The Adventures of Rick, by Mary

Rick's First Day Back at Work

2010-10-04T13:34:00.000-07:00

Photo: Working man having lunch.

Today was the day! Rick went in and did locates for the water system for four hours this morning. Then he came home to have lunch and take a nap. He's going back in on Wednesday. They are starting him easy, which is a good thing, because he sure isn't up for difficult.
God bless you, Water District 19, for standing by Rick and holding his job for him. You rock.
Tomorrow will be the one year anniversary of Rick's being diagnosed with end stage renal disease, and the beginning the great adventure of living with and learning about kidney failure and dialysis. Today is the first time he has worked since then. Now we wait and watch and see how it goes.
Meanwhile, having finished lunch he says he's off for a little lie-down.
In other news, I made oatmeal chocolate chip cookies this morning. I replaced half the sugar with Splenda. We are now sampling the cookies to see if they're any good. Cannot make a definitive statement based on one cookie. Must test more.
Splenda may make them less caramelized in taste, but they seem OK to me. While it is good in theory to have less sugar, no one has produced a fat-free Crisco so far as I know. There is no replacement for chocolate chips, either, and there had better not be. Heresy.

A Good Time Was Had by All

2010-08-04T23:40:00.000-07:00

Kanout Mfg. rides again! Photo by Ariel Howie
Now that I'm starting to catch up a little, I want to tell you all about Chris & Irene, Ariel & Glenn, coming to visit us in July.
Chris Howie is Rick's old buddy and music partner. They first met in high school days down in Marin County, and they came up here in Oatus, the 1946 Dodge flatbed truck Chris found, in 1970. They built a house on the back, and that was their lodging on that wild ride from California to Washington.
When I first came to Washington I met the two of them and played music with them and decided to move up here. It was sort of like that. We performed as Kanout Mfg. Company for a year or two.
Chris and his wife, Irene, moved over to Spangle, a town just south of Spokane, back in the mid-90s. I think the original impetus for moving over there to a farm was to raise ostriches. Once they got over there, though, they decided to get out of the ostrich business. Chris met people with whom he plays music over there.
Chris's adult daughter, Ariel, lives in Seattle, and she and her sweetie Glen came out with Chris & Irene and they made a day of it here on the rock.
We ate a lot of food that they brought, Irene & I got to visit & catch up, and then all three of us played some of the old songs - songs we sang many times years ago when we were young and took the music for granted. Now it's a blessed gift to be able to play it and sing it together again.
I'm going to try to load some more photos here - blogspot is being recalcitrant! Wish you could have been here. It was a lovely day.

Shh...Things Are Going Pretty Well. Keep It Under Your Hat.

2010-08-04T08:22:00.000-07:00

Rick getting ready to hook up to the cycler
Mary writes:
Summer finally arrived in the Northwest a few weeks ago, bringing with it a lightening of attitude with the lightening of the skies, at least around here.
Rick has made the successful change over to peritoneal dialysis, and is even using the overnight cycler machine, which for months seemed like the unattainable holy grail of dialysis. We didn't think it was ever going to happen for a while there, and now it is happening.
So far he is not experiencing the edema he had the last time he was on PD, which is good. He's still a "high transporter" - absorbing the dialysate across the peritoneal membrane into his body instead of the dialysate absorbing toxins across the membrane and then carrying them out of his body. That happens, it's working, but there is a problem with his one manual exchange a day not draining enough when he goes to bed at night.
Soooo...today he goes in to start training with a new dialysate fluid which is resistant to being absorbed by the body. This may mean he won't have to do any exchanges during the day at all.
And that may mean that he can finally, at last, TA DA, try going back to work!
But we won't know for a while. Making a success of peritoneal dialysis seems to require a process of tinkering and tweaking, to get all the procedures, supplies, and machines working as well as possible. It takes time.
Hooking up to the machine at night is a lengthy process which Rick follows step-by-step each night. I stay out of his way so as not to break his concentration. This machine is keeping him alive, and it must be difficult to plug himself in to it, do the protocol for getting started, and then lie down and go to sleep, trusting that the machine will do its job over night and he will wake up in the morning dialyzed and ready to go.
There are hiccups. A couple of nights he forgot to remove the plug from the end of the drain that empties into the bath tub, causing a blow back spray that ended up on the bathroom floor. Our grand daughter noticed one night, and our younger son noticed the next. I can see how this detail could get lost in the process, and once Rick is hooked up to the machine he ain't going nowhere for nine hours when all its cycles are completed, so if that plug isn't removed by then, someone else will have to do it.
Rick's being attached to the machine has led to a little yelling: "OH MARY! OH MARY! Would you do me a favor? Would you...?" whatever it is. Which I am happy to fetch, fix, add, take away, or whatever is required. One night he called my cell phone from his cell phone, which is one way to get a person's attention from 25 feet away without raising your voice.
Once he's on the machine, he has to stay on for nine hours. This is longer than he is accustomed to being in bed and can be tedious for him, but he's working on it.
PD seems to be working, and once he is free from the mid-day manual exchanges, he's going to try to go back to work in some capacity. We've talked about it. He feels like he has to try it. He's not ready to give up and say he can't do it without even trying. I understand this now. It has taken a while for me to "get it," how important work is to him, to most men. Part of the motivation is that we need MORE money, which is always true, no matter how much we have, so I'm not too worried about that. If it works out and he can do it, work part time for the water system, well, hotcha, that will be lovely for him, but his kidneys will come first at all times. They don't call it "end stage renal disease" for nothing.
So we have come through a rather rough patch of feeling PD wasn't going to work, being sued, and my having surgery, and things are finally starting to calm down a little. Knock wood.

A Little Good News for a Change

2010-07-13T21:48:00.000-07:00

Picture: Rick is home after the latest surgery
Today, July 13, 2010, was another surgery day for Rick. It was his ninth surgery since last October. Today's procedure was to externalize the catheter that was put into his abdomen last month (surgery number eight).
It wasn't too harsh - we didn't have to be there until 10:30, which is late by surgical standards. I dropped him off at the Swedish surgery intake lobby while I went off to another building nearby to straighten out some billing details - his insurance changed on May 1, and now two offices have billed the wrong insurance, and these things have to be straightened out.
So after that I headed back to Swedish and hung out with Rick for a while before he was taken off to the OR.
I was sitting in the Family Surgery Waiting Room talking with Cousin Nancy on the phone when Dr. Pham, Rick's surgeon, came out and told me that she'd put a liter of fluid in and got a liter of fluid out: "I think it's going to work!" she said with a smile.
This is good news. The PD catheter might work. Woo hoo.
Stay tuned for further developments.

Rick's Log: June 1 to 4, 2010

2010-07-09T14:58:00.001-07:00

Picture: Rick prepares to go to dialysis
6-1-10, Tuesday
Dad & Diane sent us birthday money (yay) and I splurged on 5 quarts of oil for the Nissan and a filter which I changed out today, at 208,117 miles on the odometer. Badly needed, too. It's been almost 5,000 miles since the last change. I believe it was the last thing I did before moving to Quartermaster Heights (in October 2007). Never once since I've owned that truck have I treated it so poorly! Shame shame on me.
I stopped off at Jon Knudson's office to give him a retainer and our debt info for bankruptcy proceedings. He wasn't so I stuffed the envelope through his mail slot. I hope we're in time.
As I was leaving I noticed with some surprise that the office right next door now belongs to Height Water! Mary Anne came floating out of the office at the same time and gave me a big hug and a tour of the new office. They've been in there for about a year and Helen has been working about 6 hours a week for WE #19 to help fill in the gaps there. Man, am I out of the loop.
Today the lawsuit was due to come to trial, but got put off until Thursday. We are eager to get this event over with. It has been such a drain on our morale.
6-2-10, Wednesday
I stopped into WD #19 to tell them the latest turn of events involving the PD catheter replacement on June 15 followed by recuperation time. If the new catheter works I can probably get back to work sometime in July. If not, the new catheter will have to come out and another recuperation period will follow. And more delay in getting back to work.
Mary spent the whole day in the courtroom listening to (the people suing us) go on about the loss of quality of life of (the sue-er). Their answers to their lawyer's questions were scripted, so their answers to all questions were identical and pat. When our insurance lawyer cross-examined them, they got a deer-in-the-headlights look, and rambled.
The judge did ask their lawyer how they came up with their figures (what they were asking in damages), a question which stumped their lawyer (Mary's note: I think the judge asked this because he wanted some comic relief, and he certainly got it).
In order to get the trial over today, Mary agreed not to testify, in part because she was so angry she thought she would make the case worse.
Boy oh boy – this is NOT the way I had hoped to face up to my elder years – being plundered while being bled white by dialysis and dying of renal disease. This is the retirement plan from Hell! My tombstone should read, “Dedicated to those who made me what I am today.”
6-4-10, Friday
The big busy day is upon me. Woke up at 0600 and caught the 8:40 boat, wading into the herd of commuters at Fauntleroy. An amazing sight and one not often seen at this hour was the line of cars waiting to catch the boat to Vashon/Southworth. They were lined up almost to the 76 station, maybe ½ a mile from the dock.
It took a half hour to get from West Seattle to the interchange of the Spokane Street Viaduct and Highway 99 (a distance of maybe two miles); then another 25 minutes to get from there to Highway 5 (another mile). Highway 99 and I-5 looked just like the West Seattle Freeway and once I got past the on-ramp to Interstate 5 it was clear sailing all the way to the VA Hospital. The parking lot had volunteer vets everywhere, helping the arriving vets to find available spaces. Wow! I felt I had come home at last! I got there at 0946, 15 minutes early. Vets everywhere! The place was packed and everyone there was guided by the spirit of helpfulness. Everyone there was moved through the lines with speed and efficiency. People helped guide me through the huge buildings the considerable paperwork to be filled out. I got my picture taken for a VA ID card and met Rita W., my case worker. Gone are the days when you had to prove by virtue of witnesses hat you had actually set foot on the soil of Vietnam to prove eligibility for Agent Orange exposure. Now, eligibility is determined by whether you carry the Vietnam service medal or not. Period.
Same thing for PTSD qualification. Turns out everybody in the Navy is presumed to have some symptoms of post-traumatic stress simply due to the fact that ships are dangerous duty stations.
I finished up for now a little before 1300 and headed for west Seattle NWKC. Earlier, while still being processed through the VA, Debbie called from Di-alysis Restaurant to find out if I could come in early today which made a formerly long day become a less long day. I was in the chair bleeding by 1330 and home by 1930.

Rick's log, May 25 to May 30

2010-07-06T22:07:00.000-07:00

5-25-10, Tuesday
A surprising front-page headline article in yesterday's paper on, of all things, the art of cursive writing! Formerly known to us geezer types as “penmanship,” it occupied a half-hour of elementary school time every day and comprised a part of the evening's homework assignments as well. Practice, practice, practice was the name of the game. Some got the skill eventually and some didn't and one of the reasons for learning it was to develop a signature as a unique and personal stamp of identity.
Many kids today (Allysan is one) can't read or write cursive and our own adult kids have signatures that imitate it. I had thought the schools had abandoned it long ago and the article says that Seattle Public Schools “encourage” the use of cursive but don't require it.

At last! Dr. Pham called. She has a surgery date set up for me to replace my PD catheter at (gasp) 0530 on Tuesday, June 15.
I have a date at Dr. Oliver's the same day.
Mary called CenturyLink to have our ground line shut off and after all this time and wrangling, the line was dead and gone within minutes. I found this out when I called Dr. Oliver's office to reset the 1100 appointment and couldn't get through. Using my cell phone, I left a message on her office's voice mail to call me back.
Kinda historical. Good-bye forever to 206-463-3327 and 463-1230.

5-26-2010, Wednesday (Art Linkletter passed today at age 97)
Next, we went through the house and boxed up all the cable TV control boxes and remote controls to return them to Comcast, instantly eliminating about $50 from our monthly house operation expenses. This is our first big step in learning to live in senior citizen poverty. Our next step seems to be learning how to wait for my meager disability check from the government which we have waited to receive since last October. It was supposed to come today. It failed to arrive. Although the benefits technically started last month, it's understandable that it would take the government a month to sign it and mail it to us. Anyway, its failure to arrive started a clock ticking for us. Back on Feb. 9 we discovered how Chase bank deals with its customers by making us track our funds down and make requests for them while they collect interest on them...while we wait in frustration for the funds to arrive.
Happy 62nd birthday to Mary. She got funny birthday greetings from Nancy who, along with Charlotte, sang her the happy birthday song while still groggy from her 2nd chemotherapy session.
Boy, did I bleed today! The techie who hooked me up (Cyrus) had trouble placing the needles and one blew out while he was trying to reset the other. Finally he had to remove both of them and start all over which left me in pain for the entire four hour run.
Meanwhile Angela called to tell me she couldn't make it to West Seattle to go over my latest care plan with me. She had several emergencies at Sea-Tac NWKC and while driving north to meet me at West Seattle NWKC had to turn around and go back to help deal with more emergencies that happened after she left.
That's okay. I was busy with an emergency of my own when she called, holding back the tide of my life's blood with a thick gauze pad while Cyrus and several other techies had to swarm a patient who passed out from low blood pressure.
We returned home late to find a worried note on the door from Gregg who had been unable to reach us because our phone had been disconnected. We gave him our cell phone numbers but were too bushed to provide dinner or conversation tonight.
So far we're not missing the phone line or the cable TV. The next thing to go will be the post office boxes. Both of 'em. Another radical move with historical overtones. I've had PO box 238 since the 70s.

5-27-10, Thursday
This is the one day of the year when Mary and I are only 2 years apart in age. She turned 62 yesterday and I'm still 64 until tomorrow.
The ticking clock that started yesterday stopped today when my first meager disability check arrived.
Mary picked up the check at the PO after we went to town to consult with our lawyer on how to declare bankruptcy.
For the moment this will help us quite a bit since the credit card companies have been in harassment mode for a while now. Everyone else in the long line of creditors we've acquired since I became a member of the Living Dead Club has been understanding and helpful but not the credit card companies, of which Discover is the most egregious.
About a month ago Jim Hutcheson (“Saint Hutch” to us) sent us a download from The Washington Post announcing “America's next Great Cartoonist” contest. The web site is about 12 pages long and when I finally got around to reading it today I found the contest closes on June 4th – right around the corner. Mary looked up their website, which contained an online registration form which required an attachment to be...um...attached containing six cartoons for their judges to consider. Unfortunately it's in Word format and Mary's computer doesn't have Word. She scanned six Offshore cartoons and sized them at 6.375” by 2.125” but when she printed them out, each strip's size was about the width of a coffee bean, i.e., nearly invisible. So, if we used their online electronic registration form, the Washington Post would not be able to open the attachment.
Mary printed up their registration form plus the six scanned cartoons so I can fill it out and snail-mail it to the Post. Only trouble is, they didn't include their mailing address but they did include a manager's name, Sarah M., and phone number.
Mary took a break to make dinner and as we sat down, Gregg walked in. Fortunately there was enough food left over for him.
I managed to get a brief bio put together for the Post while Mary experimented with various other ways to try to overcome the formatting problem but the snail mail option may be the only one available.

5-28-10, Friday
Made it to 65! Woo hoo!
First thing today I called Sarah M. at the Washington Post and left a message on her voice mail. Then I realized it's the beginning of Memorial Day Weekend.
Mary took off for the Honda dealership. Yesterday she got a call from Honda that her Civic has a problem in the driver's side airbag that may cause it to spew explosive shrapnel if it goes off. Bad feature so she's off to get it fixed.
Time to go for a birthday bleed.
(later)
I got off early enough to catch the 8:05 pm boat home and was knocked out when I walked into the house and found Allysan was there! Big birthday present! She did some special Allysan birthday cards for me. My favorite (a keeper) was a picture of me hooked up to a hemodialysis machine and her looking at me through a door and both of us thinking, “Dialysis sucks!”
I thought I hadn't gotten a call back from Sarah M. but Mary suggested I check my cell phone's voice mail because she (Mary) couldn't reach me today. Sure enough. The phone had turned itself off and there was indeed a voice mail from Sarah M. She said unfortunately all entries for the cartoonist contest had to be done electronically and wished me luck.
Mary went in, hooked up to the website and filled in all the particulars on the application form and within an hour an answer came back welcoming me to the contest.
5-29-10, Saturday
Allysan stayed the night and part of the day. Who knows how long this gets to go on? We'll just enjoy it while it lasts I guess.
The well-preserved but expensive-to-operate B-17 Flying Fortress that's been hanging out at Boeing Field for the last three weeks made two runs south and then north down Colvos Passage this afternoon. They've been selling half-hour flights to the public for $450 a pop so I grabbed the video camera and went out to see if I could expose some footage late in the afternoon. No luck but it was nice to break away from my usual dialysis patient mode for a change.
5-30-10, Sunday
Another week in the chair starting up tomorrow. Friday will be a tough day to end of the week but only because it'll be so long. I'll have my entrance interview and doctor's exam at the Veteran's Hospital at 10 am, and probably some time to kill before my 1600 to 2000 stretch in the dialysis chair that evening.
Mary notes: had a Skype call from John & Julie tonight. They sent their love and good wishes. Let's see now...if it's 10 pm this evening here, it's about 4 pm tomorrow there.

Rick's Log – the Tabletop Diary, May13-24

2010-07-05T14:16:00.000-07:00

Mary writes: it has come to our attention that we have not been keeping this blog up to date. Sorry. Today will begin a series of entries going back to mid-May, from Rick's writings in the tabletop diary, which we hope will bring you up to date. Oh, and the picture is of most of Rick and our dog, Jive, "sitting pretty."
5-13-10, Thursday
Before we went to our monthly meeting with Dr. Oliver today we put together a list of questions about what the future holds for me, treatment-wise, and it tentatively came to this:
Peritoneal dialysis (manual exchanges) with over-night cycler treatments are not possible. Dr. Oliver wants to make one last call to the PD folks to discuss a possibility for continuation but for the most part it no longer appears to be an option. As it stands, it seems like the only route left is to keep on with hemodialysis 3 days a week in West Seattle. Forever.
She wrote us a letter to give to Jeff Lakin (manager at District 19) approving a return to work on the non-dialysis days (Tuesday, Thursday, Saturday, and/or Sunday), whatever that may be. If those days changes, work days will have to change also.
I'm going to give it until next week to bring up with WD #19. By then we should have results back from PD's decision, yea or nay. Then it will be up to WD #19 to decide if they want to keep me on under those conditions.
If PD's decision is final not to continue that form of treatment, there will be one last surgery to remove the PD catheter and one last recovery period.
We thanked Dr. Oliver for all her help and for saving my life when I needed it most. It appears the PD people hold all the cards and they appear to be inflexible. Living or dying of renal failure is my problem now. Their choice and their decision is to live by their rules.
I sure don't want to play on that team any more. Meanwhile, we're going to stick with Dr. Oliver.
5-18-10, Tuesday\
So much happening. Too much in the last five days to even find the time to document it. Where to start, or re-start? It may as well be today.
Mary: on 4/27 she had a needle biopsy of her breast to check out a tumor which was not malignant (probably) but was “atypical,” requiring closer inspection as well as excision. This is “the bulge in Mt. St. Litchfield” she is having done today which, coincidentally enough is the 30th anniversary of the eruption of Mt. St. Helens.
To assist us, Sonya Norton drove up last week for a visit and to provide a friendly, stabilizing presence to help offset the mounting chaotic series of events that seems to be endlessly buffeting us hither and yon through the pinball machine of what has become our lives lately.
Today I'm recovering from yesterday's hemodialysis which began with a painful needle infiltration of my fistula, causing another hemotoma. The last time this happened was January 27th and it's no more fun this time than it was last time. Yesterday I went straight away into low blood pressure and nearly passed out; then spent the remaining four hours in a state of semi-conscious pain.
Before this happened, I got a call from long-lost Angela from Sea-Tac PD. Haven't heard from her since 4/22 when I flunked out of cycler training due to unreliable PD catheter performance. Angela was horrified that in her absence no one from the PD program had made contact with me during the whole catheter repositioning until Angie (not Angela) called me on 5/6 to have me come in on 5/11 to have the repositioned catheter flushed.
We all remember how that turned out. PD staff disappeared once again and everyone from Dr. Pham to Dr. Oliver sadly concluded that peritoneal dialysis was no longer an option for me. The next and last thing for me to do was have another goddam surgery to remove my PD catheter and I'm bumped back to hemodialysis for the rest of my life!
That was last week.
Hemo is very debilitating. Dr. Oliver said in her letter to Jeff Lakin that I could do hemodialysis on Monday, Wednesday, and Friday; then, instead of recuperating, I could work Tuesday, Thursday, Saturday, and Sunday.
To me, this sounded like a recipe to kill me off as quickly and painfully as possible but of course that wasn't true. It just wasn't what I had hoped for. Throughout this whole process of learning to live with an incurable disease, my imagination has been my own worst enemy. It's only good for rehab; not at all for planning the future.
So – yesterday morning at 0905 a nice lady at the Polyclinic calls (Dr. Pham's office) to tell me that Dr. Pham is out of the office until Wednesday but she would like me to consider an option to what appeared to be her unconditional surrender last week on 5/11. Not surprisingly, the option turned out to be more surgery! Not a mere repositioning of the PD catheter this time. She's talking about tearing the whole works out and completely replacing it. It was just the kind of bold, radical solution I was ready to consider, especially after the miserable, painful experience I had later that day at hemodialysis with the infiltrated needle.
So – on my way to the ferry, I took Dr. Oliver's now superseded letter of approval to return to work and dropped it off with WD #19 so they could have it in their records. It will change of course after my next surgical procedure which, if it succeeds, will put me back on track for continued PD treatment as well as a return to eligibility for use of the cycler.
Mary's home from her surgery, in bed stoned out on painkillers and doing well.
I spent Saturday recovering from Friday's hemodialysis and on Sunday we all went to Allysan's 8th birthday party at Dockton Park. It was fun and Nycol did a great job putting it together. It was also the only opportunity we had to see Allysan this weekend.
5-21-10, Friday
The hemotoma I got last monday is not as visually dramatic as the one I had last winter but it sure makes hemodialysis more difficult. The techs have a hard time finding the fistula beneath the swelling and so have to use a stab and hope technique which, coupled with two more hepatitis shots today, is making me feel like a voodoo doll.
Yesterday about 4 pm the dog went off and when I went to check I found none other than Rick Cote at the door. He and his wife Ellen and two boys, Aaron and Zach, lived here in the Park when the kids were growing up, during the 80s. They packed up, sold the house back when real estate was still real, and moved to Spokane. Now Aaron is about to get a post-grad degree down in LA and Zach is living up in Bellingham. Like all of us these days, Rick is just a little older and grayer, and we had a nice visit.
5-24-10, Monday
Bad dream last night. I was hired as a utility locator without notification and sent straight into the field without any training since their records showed I had received training in 1997. I had 5 locates to do and screwed up all of them because I knew nothing of the new formats, causing me to get into immediate hot water with a supervisor. He said I was the worst locator he had ever seen and was like something out of his worst nightmare. This triggered a sense of recognition in me and I realized immediately what the solution to the problem was. We were both having the same nightmare but I was the only one who could solve it. I thanked him for his managerial insight and said good-bye. As he began to erupt into a raging temper tantrum, I woke up.
(Mary's note: Rick is a lucid dreamer, which means he can be conscious of having a dream while he's having it and direct the action in the dream)
Alice Orr came over at 1000 to take Mary to Swedish for a check-up to see how her surgery site was doing.
Meanwhile, I called Dr. Pham's office to find out what's been going on since I received the call from her office on 5/17/10 asking if I would consider surgery to replace the PD catheter. Dr. Pham is considering moving the catheter from its present location on the left side of my abdomen to the right side. Radical! (note: this is left and right as Dr. Pham looks at Rick, so to him it will be a move from right to left. Don't think about it too much)
I called Angela over at Sea-Tac PD to fill her in on the latest details, just to include her in the loop.
It's been busy so far today. The VA called with a recorded message which was kind of a surprise.
5-24-10: Mary gets pathology report on removed lump. NO CANCER. Woo hoo! Big woo hoo! An early birthday present! Yaay

The Day After The Latest Surgery

2010-06-16T16:40:00.000-07:00

Greetings once more from the Northwest Kidney Center on Delridge Way in West Seattle. Dropped Rick off here around two and went off to have adventures - i.e., got a new battery for my cell phone. Got back around four and discovered him sleeping quietly in the dialysis chair. He had to have shots today, and after he has shots he has to wait for a while before getting hooked up to the machine. I imagine this gives the shots time to soak in before dialysis filters everything out of his blood.
He did have his seventh surgery yesterday - old catheter out, new catheter in. This surgery has turned out to give him more pain than most of the previous ones.
We got home from the hospital last night and both of us dropped into bed. I was fully clothed, and slept straight through until ten this morning, over 12 hours, and I don't think I moved much during that interval. I was tired. Rick was in a world of hurt. He says it's better today than it was last night, so we look for improvement in the pain area as time goes on.
You can see why I did not want to disturb his sleep in the chair just now.
Our thanks and appreciation to all who have inquired how he is doing. The hope of perhaps being able to do PD again has him doing well. We know it might not work, but at least he has a shot at trying.
The Kidney Center is set up for people having dialysis. It is not set up for spouses or other family or friends of people having dialysis. That is why I am sitting in my car, netbook propped on steering wheel, typing away. I am sorry to complain about this; it is my nature to complain I suppose. They do provide free wifi.
That's about it for today.

A Ray of Hope, a Roasting Chicken

2010-06-02T19:17:00.001-07:00

Mary here:
We live in interesting times here at Casa Tuel.
Rick is over at dialysis this afternoon. I splurged and bought a roasting chicken, which is in there making the house smell good as I type. Making the house smell good is the reason I decided to roast a chicken. It will be nice for Rick to walk in later tonight to the aroma of roasting chicken.
And it might taste good, also. We'll see.
Here is the progress on Rick's dialysis situation: His nephrologist and his vascular surgeon told him he was at the end of the road for peritoneal dialysis because of his drainage problem. What this means is that he'll be stuck on hemodialysis for the rest of his life. He was extremely bummed out. Hemodialysis keeps him alive, but it's not the kind of life he had for the first 64 years. It's a life of going to hemodialysis and then recovering from hemodialysis. Rick has never been a lie around and do nothing guy. He's been a get up and go to work guy.
We are not sure why, exactly, but the vascular surgeon has decided to try again. On the 15th of June Rick is going in for surgery (his 7th surgery since last October). The old catheter will be removed, and a new catheter will be put in on the other side of his abdomen. The new catheter might drain better than the old one. It might not. We don't know. The surgeon is going to put the new catheter in, though, and after a period of recovery, Rick will try peritoneal dialysis again, and we'll see if the new catheter drains reliably.
The present catheter drained fine, sometimes, but about half the time it didn't drain well, or at all. This one may be no better, but Rick is highly motivated to find out, and perhaps that's why his doctors are going to try again. I don't really know.
He said today as he was getting ready to leave that if this catheter doesn't work he's going to ask for a strong anti-depressant. I've been thinking about that, too. If this catheter doesn't work, if his insides simply are not built for this type of dialysis, he'll be stuck on hemodialysis forever. In which case – well, we'll cross that bridge when we come to it.
Oh – I checked our bank balance today, and some mystery person has put $50 into our account. Thank you, mystery person. Bless you. The good financial news here is that Rick's disability payments have started, so we have an income for the first time in months. The bad news is that it isn't much and we're probably going to declare bankruptcy. The other good news is that I'm retired! The bad news there is that I won't see my retirement check for another two months. Oh well. We've made it this far. We'll make it until August.
And you'll note we still have the internet. Mmmm. I like the internet.

But At Least He Has Time to Draw and Write

2010-05-12T23:09:00.000-07:00

It's Wednesday night, which means tomorrow is garbage day. Garbage pick up - there's something I could cancel, but it would cost about the same to haul the garbage to the dump ourselves, and we'd have to do the heavy lifting, so maybe I'll keep that service.
Anyway, we'll put the garbage out tomorrow. Hope we remember first thing in the morning.
Rick goes to see Dr. Oliver tomorrow. Dr. Oliver is his nephrologist. We like her - she's caring, and compassionate, and encouraging, and a good doctor as well. She knows her kidneys.
Things have not been great on the dialysis front these last few weeks. Rick continues to go to hemodialysis, and tomorrow we'll talk about whether he can go back to doing peritoneal dialysis at home.
It turns out that his compact, wiry little body works against him in peritoneal dialysis. His organs are packed so tightly that they tend to flatten the catheter inside of him and prevent him from draining dialysate as well as he is supposed to, or as is optimal for using this method. Consistent draining is a requirement of the over night cycler, which is looking less and less like an option. He tends to drain eventually - but not immediately. The worst part of that is that he develops edema.
Having to stay with hemodialysis would be a bummer, on the one hand. He has to drive into Seattle three days a week and watch his blood get sucked out, filtered through a machine, and then pumped back into him, and he's tired out by the process. On the other hand, there is the big plus: he gets to stay alive.
This is the trade-off of kidney failure in our time and place. You have to have dialysis or a kidney transplant to survive. Those are the choices.
Rick hopes to return to peritoneal dialysis, anyway. Discussing that is going to be a big part of our meeting with Dr. Oliver tomorrow. That, and his persistent cough.
Stay tuned.

The Great Vashon Earthworm 1974

2010-05-01T15:05:00.000-07:00

Illustration by Rick Tuel. He did the black and white cartoon first, and then our friend Susan Bardwell sent him some watercolor pencils, so he colored it in. Here you have both versions.
"Scientists unearth fabled Palouse worm" said the headline on the front page of Section B of the Seattle Times on April 29. Rick's interest was immediately caught, as was mine.
A few years ago Rick told me the tale of a giant earthworm he ran into back in 1974 while working for Masahiro Mukai, owner of VIPCO. Mr. Mukai and VIPCO put in many water systems and septic systems on Vashon Island, and laid a lot of pipe in the process, between the end of World War II and 1980, when Mr. Mukai retired. In recent years Rick has dug up and repaired pipes and connections he put in back in the 1970s.
In 1974 Rick was a young man who had mastered the art of using a shovel, and one day he encountered a worm. Not just any worm. A HUGE worm. He told me about it a few years ago, and I went online to look up "giant earthworms," which led me to the Palouse earthworm (Driloleirus americanus).
It is indeed fabled - said to be up to three feet long, pink or albino, and emitting a fragrance like lilies. It was common in the Palouse region of Washington state back in the 1890s, and three-foot-long specimens were reported, but not many had been seen in recent decades, and none were more than half that long.
Now we come to "Jodi Johnson-Maynard, a University of Idaho associate professor and a soil ecologist specializing in macroinvertebrates," (who) "continues her years-long pursuit for just this elusive giant white worm with a fresh project for the summer of 2009."(1) That's what it says about her in the Wikipedia article about the Palouse earthworm. There is a whole lot more information about giant worms on the web than there was the first time I looked them up.
It was Ms. Johnson Maynard's graduate student, Shan Xu, and a research support scientist named Karl Umiker who on March 27 of this year discovered a group of earthworms - an adult, a juvenile, and three egg cocoons - which they believe are Palouse earthworms.(2)
The adult has been dissected in the interests of science, first to identify its DNA and then to provide a comparison for future worm identification.
Rest in peace, adult earthworm.
Grad student Xu said she did not sniff to see if the worms smelled like lilies, and they did not spit. She described them as "very gentle."
Well, so that's the latest on the Palouse earthworm, and you can read all about it at Wikipedia.
In response to the Seattle Times story, Rick wrote this letter to the editor of the Times. Let's let him tell his worm story:
"Editor, the Times:
"I was fascinated by the report in April 29th's Northwest section by Sandi Doughton, 'Scientists unearth fabled Palouse worm.' I've lived on Vashon Island since 1971 and have wanted to know more about these giant worms since 1974.
During the summer of that year I was working for a contractor installing a 4-inch water main on the west side of Asta Lane SW close to the island's north end ferry dock.
"We had opened about 75 feet of trench from the intersection with SW 112 street to a depth of 3-1/2 feet, and I was clearing the bottom in preparation for laying in the pipe. The soil was coarse and sandy so I was watching the trench for signs of collapse when I noticed a dimple about the size of a walnut, about six to eight inches below ground level, begin to appear in the sidewall. The dimple became larger as it bulged outward and sand began to fall out of it an into the trench. Shortly, the business end of a chubby earthworm appeared and tentatively began to feel its way out of its tunnel and down the sidewall.
"It took several minutes for it to reach the bottom, a good three feet down, before releasing its anchored tail from its tunnel and dropping to the bottom of the trench in a heap. Lengthwise it looked more like a snake but in every other respect it appeared to be the most enormous earthworm I had ever seen.
"The Palouse earthworm is said to have an aroma of lilies; this worm smelled like cucumber.
"Now nearing retirement, I can say I have opened many a trench and excavation on Vashon Island since that day without ever encountering another such magnificent specimen again."

Rick did remark that he asked Mr. Mukai if he'd ever seen such a worm in his excavations on Vashon, and Mr. Mukai said, "Oh, yeah, I've seen some of those things."
So - the question is: Have YOU ever seen one of those things? We would love to hear from anyone on Vashon or Maury Island who has encountered a giant earthworm. So would Ms. Maynard-Johnson, who, when I emailed her, said she'd like to hear if anyone else has seen a giant worm here.
Contact us at shipoftuels@hotmail.com, subject line "Giant Worm" so I can find you in the spam filter, and tell us all about your close encounter with giant worms.
And then if you really want to see some big worms, check out the Australian Giant Gippsland earthworm on Wikipedia - yikes.
(1)Wikipedia article, "Giant Palouse Earthworm"
(2) Seattle Times, "Scientists unearth fabled Palouse worm," April 29., 2010

Our Interesting Week

2010-04-30T19:59:00.001-07:00

Photos: Rick & clouds from ferry dock Wednesday afternoon; Blake Island and rain squall, also Wednesday afternoon. Photos by Mary
One thing we have learned about the people at the Kidney Center – people who work with people in renal failure – is that they are ruthlessly honest, direct, and decisive about maintaining and improving the health of their patients. This is a good thing, and can be a little breathtaking.
Rick had to go back to hemodialysis a week ago, because his PD catheter was not draining right. He was scheduled for hemo again on Monday; surgery to repair his catheter on Tuesday; and hemo again on Wednesday and Friday. Next week the modified (replaced? Reset? I really am not sure what was done) catheter will be flushed, and soon (we have not been told when) he will be training again to use the overnight dialysis machine. We think that because a truck delivered enough supplies for the overnight machine to fill one-third of our living room. We consider this a sign that overnight dialysis is a-comin'.
So that was Rick's week, and those are the expectations for him. He is still recovering from the surgery – I don't care how small the incision or sharp the instruments, getting a hole cut in your abdomen is an insult the body does not take lightly.
Now, Rick has been saying since last October that he has had to get used to this medical stuff being all about him. He has said frequently, “It really is all about me,” kind of like someone in therapy repeating an affirmation they don't quite believe. What it means is that he understands that his life depends on his being taken care of, and his doing the right things, and his accepting the attentions and procedures that are all aimed at keeping him alive and as healthy as possible for, as he says, a walking dead person.
And that has been what we've worked for all these months.
I have been in charge of the paperwork, and filling out applications, and finding and copying and printing out documentation for these applications. As a result he is going on Medicare as of May 1, and will also be enrolled in a Kidney Disease Program. Also as a result I will have no medical insurance as of May 1.
Knowing that my insurance was ending, I made appointments for various exams and tests. The colonoscopy went beautifully. According to the doctor, my colon is in great shape. This was good news. Then I had a mammogram.
Not so good news. There was something that needed to have an ultrasound. OK, let's get it done before the insurance expires. So I had that done Tuesday morning, coincidentally the day Rick was scheduled to have his catheter surgery. Well, what the heck, we were going to be at Swedish all day anyway.
So I had my ultrasound in the morning, and saw this little black rock in my breast, and was told I needed to have a needle biopsy on it. OK. When? I have three more days of insurance. Well, how about this afternoon? OK.
So I dropped Rick off at surgery intake, walked over to the Breast Center, and had a biopsy, which I watched on the computer screen, and it was fascinating. At the end a little metal clip was fastened to the lump so it would be easily identified in later mammograms.
Then I walked back to the family surgery waiting area and had the usual nap I take while Rick is having surgery. When he was awake, they called me, and I went to the recovery area, which has become all too familiar to us the last six months, and after a couple of hours he was considered awake enough and full enough of painkillers to be released, and I took him home.
I've been telling people that I cannot recommend having surgery on the same day as a first date. No, this is the province of people who have been married for 30 years. Go back and read your wedding vows, and you will realize that they were written with days like this in mind.
So the two of us have been recovering from our various procedures the last couple of days – make no mistake, his was much more serious than mine, but I am still sore and feeling the effects of my little procedure.
Today I got the phone call on the results of the biopsy: not cancer. Yay!
But.
But? Whaddaya mean “but?”
But there are atypical cells, and the lump has to be excised and examined to make sure there is no cancer, or if there is, to treat it. Cancer is unlikely, but they want to make sure.
So I called the breast surgery center and made an appointment to meet with a surgeon next week. When I mentioned that I am losing my medical insurance, the nice lady who made the appointment mentioned charity, and said a Swedish social worker would call me by Monday.
To my friends and family I have not told about this situation, I apologize if you are reading it here for the first time. We've been busy here, and I've been treating the whole breast situation as background noise to doing what we have to do to maintain Rick's health.
The little black rock with the clamp in it will be removed, and we'll find out if there is cancer or not. Chances are good that it is not cancer, but if it is, then finding it and treating it is a good thing. This is one of the things I've learned from hearing “cancer” as a diagnosis twice with Rick. It's stunning, but finding it and treating it is the best thing you can do.
So in this I have to realize that “it's all about me.” Kind of like a therapy patient repeating an affirmation she doesn't quite believe.
I foresee more paperwork. Sigh.
I am grateful: to Swedish, to good doctors and nurses, to friends and family who have loved and supported us all the way, to God, and to the constant reminders of what is real, and true. I hope to have good news in a couple of weeks. Good news, and another incision to recover from. It's good to be alive.

Sometimes You Think Something Is Going to Be Bad, and It's Not. Yay.

2010-04-25T15:30:00.000-07:00

Rick writes:
4-24-10 Saturday
Yesterday's return to hemo was not so bad. I kept myself as motionless as a stone for four hours and had no serious cramping until bedtime.
The edema I've been unable to get rid of for a month on PD disappeared during the 4 hours of hemo. They pulled off 2.2 kilos of water weight during the time (one of the causes of cramping is dehydration).
I hope the coming week goes by quickly. It's going to be another hard go-go marathon for which I may need Mary's help by Wednesday, to get me to hemo after Tuesday's mid-afternoon surgery.
On Monday, Mary's going into the court house to see if we're actually having a court trial starting up with the ****** Case (name concealed to protect all involved). The lawyers were supposed to have a meeting last week to see if it was possible to settle out of court but no one contacted us to divulge the results. Likewise we've received no information on whether the trial has been put off due to a lack of available judges.

Mary writes:
You know how sometimes it seems like everything happens at once? This is one of those times for us. I'm filling out all kinds of applications for various programs for Rick and for me; tomorrow I have to go in and see if there is a trial I'm supposed to be attending, and whether I am or not, after that I have to go to various agencies and offices to turn in applications & documentation. Don't know when I'll get home. Rick has dialysis in the evening, so we'll be two ships passing in the night, so to speak.
Thanks and a tip of both our hats to friends Pen & Kathy who fronted us a ferry pass which will enable us to both go to Seattle and make it home this week without having to both spend from early in the morning to late at night in town.
This week is the last week I have medical insurance, so I'm going to have an ultrasound Tuesday morning and then stick around while Rick has his surgery Tuesday afternoon. Wednesday it appears I'll be driving him in to dialysis. Thursday we may just pass out. Unless I have to be in a courtroom.
The court trial: a person fell off one of our porches two and a half years ago and broke an arm, and has refused to settle with our homeowner's insurance company ever since, and is insisting on a court trial. The trial has been scheduled to start tomorrow, Monday the 26th, for months, but now may not go forward and may be continued until who knows when. I wish someone had given me a call on Friday to let me know for sure the trial was off for Monday. Sure would simplify my life. I wish I didn't have to be there, but Rick and I are the ones being sued, so I guess one or both of us needs to show up, and he's busy staying alive, so I'm it.
Hope your week is more tranquil & peaceful than ours will be.

Back to Hemodialysis

2010-04-22T15:03:00.000-07:00

Rick writes:

4-21-10 Wednesday
Not much time for writing this month and this week has been consumed with training to use the PD cycler. A crisis developed among the PD staff on Monday just as training commenced, which threw a glitch, which I'll describe technically as a monkey wrench, into the works. Instead of transitioning smoothly into cycler training, I've been instead cycling to different dialysis centers to keep on track.
Nurse Angela has been concentrating on the erratic track record of my PD catheter, which hasn't been performing well. It produces drains which are low and then abnormally high later on, making the daily fills hard to predict and hard to calculate. Today she sent me back to the hospital for an x-ray to see if constipation was the problem. By the time we got that done, the PD clinic was closed so I left the disc at the front desk for Angela to see tomorrow. The x-ray tech showed me the pictures before I left and everything sure looked clear to me but Angela will make the call when she sees them tomorrow morning.
I tried to leave the x-ray at the desk in the PD clinic but it was about 18:00 when I got out of the hospital and the 4th floor wasn't accessible for the elevator by that time.
4-22-10 Thursday
Angela called at 07:30 wondering where the disc with the x-rays was. Apparently I was supposed to leave it at the 4th floor desk after all and she called back a half hour later after picking it up downstairs.
She agreed the film looked clear (no constipation) and said it was pretty plain that the PD catheter was installed too high in the abdomen and had to be surgically repositioned.
Sigh. This is a big setback. I hope I don't have to wait too long for the surgical procedure to get set up.
Not Much Later:
Well, I sure didn't need to worry about waiting. Before the morning was out, virtually the entire medical support group called almost simultaneously. I'm off PD and the cycler and scheduled to go back on hemodialysis at West Seattle NWKC 16:00 to 20:00 tomorrow afternoon until further notice. No word on a surgical date but I'll bet I don't have to wait too long for that to get scheduled. Either.
I called Water District #19 and passed on the bad news. Going back to work soon is out the window. Again. Sigh.
4-23-10 Friday
Very impressive! Dr. Pham's office at the Polyclinic called this morning to arrange a surgery date and I opted for the earliest possible date which is Tuesday, April 27th, at 14:15 at the Swedish First Hill campus. The sooner the better! I also scheduled the follow-up appointment for May 11th at 11:00.
Yesterday at Dr. Oliver's suggestion I dumped the last bellyful of PD dialysate from yesterday morning's 2000 ml refill. The troublesome catheter produced only 1700 ml, even after an hour and a half of concentrated effort to get it all out.
Now I'm halfway mournful that the tunnel catheter is gone, much as I hated it. They'll now be bleeding me out through the fistula for the next two or three weeks. I'm just a mass of contradictory emotions at the moment, none of which have any basis in logic. The most illogical of them all is the feeling of abandonment I have for the PD staff for pitching me back into the cauldron of hemodialysis like a reject in a pinball machine.
Thank God for the antidepressant.

Mary writes:
What Rick does not mention here is edema, which was the great evil produced by the non-draining catheter. Fluid has been accumulating in his body, visibly in his feet, hands, and face, not so visibly in his lungs and heart. This is Not Good.
The advantage of the dialysis center machines is that they can remove fluid from the system, eliminating the edema.
The disadvantage to that is that Rick gets severe cramps when the machine removes fluid from his system.
It's a trade-off.
We are not overjoyed, except that the medical people seem to be moving fast to fix what has gone wrong.
Rick is most disappointed in that this will put off his going back to work, as he noted above. He had his hopes up with his training on the cycler.
"Every bump is a boost, Pinky." That's what his grand dad used to tell him. The boost to this is that apparently he was never going to be able to use the cycler machine successfully with this catheter, so fixing it will get him closer to trying again.
And with the edema cleared out of his system, he won't sound like he's underwater when he coughs anymore. I hope.

Fluid Overload

2010-03-26T23:33:00.000-07:00

Rick writes:

3-20-10 Sat. 6 days to heal
Today is the vernal equinox – night and day are the same length.
Reviewing the recent past I found that I carried the tunnel catheter for five months plus a day (10-15-09 to 3-16-10). No wonder it was so hard to extract.

3-22-10 Monday 4
We had a nice weekend with Allysan but her dad had to take her home early yesterday afternoon due to his work schedule.
Today was a trip downtown to Seattle NWKC to meet w/Angela due to a change in her work schedule. Ordinarily she is at SeaTac from Monday to Thursday. Preparing for this visit involved saving up four bags of used dialysate, three yesterday and one this morning, numbering each one in order #1 through #4 and collecting a total of 1100 cc's of urine to deliver to Angela for testing in order to see how effective my home treatment is. Angela emitted a squeak of delight when I delivered this gross offering to her. She's probably the only woman in the world who would welcome such a “gift” with enthusiasm.
Afterward, Mary and I took our usual route home through Alki and picked up our usual lunch of fish and chips along the way.

3-23-10 Tuesday 3
I got a call this morning from Rochelle at the Veteran's Administration. My application for veteran's benefits was received and reviewed and I'm assigned a Group 6 veteran's rating. Official notification of acceptance will arrive in the mail soon and I'll then set up an appointment for an interview.
As a Vietnam vet I'm eligible to apply for compensation for agent orange exposure whether I spent any time ashore or not. To my recollection, the closest I personally ever came was when the ship spent part of a day in Da Nang harbor and I was the utility boat signalman sent out to tow the captain's gig back to the ship when it went dead in the water (Dec. 16, 1967)
After all these months of steady sprinting for doctor's appointments and various surgeries it has been a welcome relief, both physically and financially, to finally adapt to the more relaxed schedule that home dialysis offers. This is the right opportunity to start up with the VA now that things have slowed down a bit.

3-24-10 Wednesday 2 days to heal
Actor Robert Culp passed away today at 79, after taking a fall at his home in the Hollywood Hills.
Bernie Madoff, a financier who made off with billions of dollars from investors and was imprisoned for 150 years, reportedly was beaten up by fellow inmates today or maybe yesterday. Anyway, it's long overdue.

3-25-10 Thursday 1
Life has certainly become simpler since hemodialysis went away. PD comes equipped with its own quirky set of peculiarities though: 1. Dehydration, and 2.fluid overload. I would hope to achieve a happy balance between the two but it turns out to be quite a challenge. I would delighted to experience some dehydration right now but fluid overload (edema) appears to be in the driver's seat. Even though I avoid water as much as I do salt, it accumulates in my tissues every day doing what water does best, i.e, heading for the low spots. By the end of the day my feet and ankles are ballooned out and painful. Going to bed is a sort of relief but the water redistributes itself horizontally and I wake up with swollen hands and wrists. Life has become a repetition of this sequence for this month.

3-26-10 Friday 0 – Tunnel catheter came out 10 days ago. I am now officially healed.
Twenty years ago while I was the sole operator for Heights Water, a new Vashon resident got himself voted in as one of the four trustees of the association. It used to be a joke that the only qualification for eligibility was that they had to have once been a Boeing engineer so it was a strange departure from this unwritten policy that this volunteer had been a marine Engineer all his working life. As such he was endowed with the ME's personal attitude that he knew everything that was to be known in the physical world and was therefore never wrong about anything.
He had an answer for everything in the working world including how long it took to heal up from any given injury in the working world. This was necessary information if you were in charge of the efficient distribution of labor and his assessment of a reasonable length of time for any injury to heal was 10 days. No more; no less. And no exceptions.
He applied this rule to himself when he came down with prostate cancer and this delayed his recovery when I caught him digging up a leak in one of Height's pipes exactly 11 days after his treatment started. This led to a small heart attack which set him back another 10 days but failed to impress upon him the need to allow recuperation to take its course, however long that may be. He went to work on his house with a vengeance after putting it on the market, where it failed to sell. The effort caused a stroke and sure enough, after 10 days he was back to work on the house, which finally sold and he was able to then move off the island into an apartment. With his wife safely housed ashore he put all his affairs in order and died. What a guy! An inspiration to us all.
I am now the keeper of the “10 days to heal” rule. I stripped the pressure dressing off the site where the tunnel catheter used to be. It's not quite healed yet. I'm going to give it more time.

Mystery

2010-03-22T12:57:00.000-07:00

We have had something of a mystery here the last few days. The mystery arrived as a white envelope, addressed to me in handwriting I did not recognize. Inside was quite a lot of money in cash wrapped in a white piece of paper. No names, no return address, no nothing - just money.
The one clue: the envelope was postmarked Medford, Oregon.
Rick and I know a few people in Oregon, and a couple of people specifically in the Medford area, so we have, let me say, a strong hunch about who the mystery philanthropist might be. But we don't know.
We figure that anyone who went to that much trouble to remain anonymous should be allowed to do so in peace. So whoever you are, anonymous, we received your gift and we thank you and appreciate what you did. Bless you.
Enough said, know what I mean?

St. Patrick's Day, 2010 & Our Thanks to You Again

2010-03-18T00:08:00.000-07:00

On Monday we went to see Rick's nephrologist, Dr. Oliver. She was pleased with Rick's progress, and said it was time to remove the tunneled catheter.
Ta Da!!!
The tunneled catheter was put in last October so Rick could go on to hemodialysis. It is exactly what it sounds like – a catheter which is tunneled into the chest and in Rick's case, into his jugular vein. It had two ends that hung out of his chest, a red one and a blue one. I told him they looked quite festive. One was for blood coming out of his body and one was for blood going into his body when he had dialysis. Don't ask me which was which.
In December he was given a fistula in his left arm, and if he has hemodialysis now needles will be inserted into his fistula. Rick is not wild about the idea; the last time he had dialysis through his fistula he had severe leg cramps, and jumped up to try to ease the pain, and pulled the needle loose, and ended up with a hematoma that covered his entire left forearm. While an entirely purple forearm is a rare sight to see, it's not something you want to have. Took weeks for it to clear up. So from then on he was given dialysis through the tunneled catheter.
Now, though, he has made the transition to peritoneal dialysis, yay, and his fistula is there if he needs it, and it was time to take the tunneled catheter out before it developed an infection.
So, Tuesday morning we headed in to Swedish Hospital, our home away from home, to have the catheter removed.
The procedure was done at Radiology on Four East. I don't know why Radiology is the name of a department that does minor surgeries. I thought radiology was x-rays and sonograms and cat scans and such. Well, this part of radiology is minor surgeries. We shrug our shoulders and go where we're told.
This is the same place where the catheter was put in, and I learned then that Four East Radiology has the best couches for sleeping on in the hospital, at least that I've found so far.
The couches are located in a curving walkway between the waiting room and the surgery area. The exterior wall is windows, so you have a lovely view of the Central District and the Cascades and Mt. Rainier in the distance. But right next to those windows are these lovely couches, with nice thick cushions, and rolled bolsters on each end. I find that I sleep beautifully on these couches. When Rick walked in to have his catheter removed, I tucked myself in to a couch, covered up with my coat, and dozed off until an hour later Rick shook me awake and said it was time to go.
He said that it took two guys to pull the catheter out. One tried to pull it out and failed, so he called in a BIG guy, and the two of them tugged and pulled and wrestled the catheter out. He said it made a “POP!” as it came out. And yes, they had locally anesthetized Rick for this.
Afterward we cruised by The Spud down on Alki and picked up some fish and chips. There was a high wind blowing, causing actual little white foamed rollers on Puget Sound. This is pretty rare. Rick couldn't wait to get on the ferry and feel those swells beneath his feet, but by the time we got on the ferry the wind had died down quite a bit – there were still whitecaps, but not the wind-driven waves we'd seen earlier.
But the inside of my car smells like garlic-infused malt vinegar now, which is nice.
Today we both slept all day.
That's not entirely true, but close. I can blame the sleeping pill I took last night for part of it; but I think we were both a little tuckered out from the two days in Seattle and the catheter removal. So we slept through St. Patrick's Day this year. We've become used to being home again the last couple of weeks while Rick has been using peritoneal dialysis, and have not missed the constant traveling to Seattle at all, and it wears us out when we go. Perhaps tomorrow I will get around to calling all the people I was supposed to call today.
The next step in dialysis will be a cycler, a machine which will perform dialysis for Rick overnight while he sleeps. This is so darned exciting, I can't tell you.
Now, the Thank yous: many years ago, when I was young, I was privileged to know songwriter Malvina Reynolds. Malvina was a socialist living in America, and she once told me that in this country, money equaled respect, so she had no qualms about charging for her records or the use of her songs.
Well, a couple of weeks ago in this blog I asked you, if you could and felt you were called to do so, to send Rick some money, because we have used up our savings and have no income at present. Your response to that request tells me that you love and respect Rick quite a lot.
So we thank you, for your love and respect and generosity. We will now be able to keep Rick insured until May, when he will transfer to Medicare. Whew. We will also be able to pay a few medical bills, non-covered deductibles and such. Thank you, thank you, thank you. You are very, very good to us.

Rick Dreams

2010-03-11T23:59:00.000-08:00

Mary writes: Rick has always had the most amazing dreams. They have complex plots, and they're funny. Rick is a lucid dreamer, i.e., he is able to consciously direct what happens in his dreams. If he is not enjoying the dream and thinks, "Wait a minute, this is a dream. All I have to do is wake up," he does - wake up, that is. I've always envied him that capacity.
The last few days he has been entertaining himself by drawing an illustration from a dream he had in February. I've been telling some people about this drawing because I think it is so cool, and tonight I scanned it so I could show it to people. It's not really completely done, but close, so I may replace this drawing in a few days when he's polished it to his satisfaction. Looking at it tonight he remarked that he needed to put one more sock in, for example.
Note: The "Mom" he mentions in the dream is his mom, Dawn, not me - he calls me Mom to the boys, so I had to ask.
Rick wrote:
From February 7, 2010:
I spent the night dreaming I was visiting an apparently uninhabited town with no name although for some reason it had been preserved in its original state somewhat as a museum. I parked my truck on the untended, grassy outskirts and Mom and I got out to see the sights together. As we walked the deserted streets I met a fair number of my old friends who also happened to be there. Mom went off by herself and I found an art store to explore. There was nothing for sale there but it was set up with innumerable displays of various artworks by former residents.
My Navy buddy Warren Bek was in there, inspecting an incredible sketchbook which he was marveling over and passed to me.
“See if you can figure this out for me,” he said. “Stare carefully at the drawings for awhile and you'll get a big surprise.”
The first sketch depicted a small rocky mountain with a path spiraling around it from the base to its peak. Primitive humans were walking up the path and seemed to evolve into modern humans by the time they reached the top. Miraculously, as I stared at the scene intently, it would briefly animate itself long enough for the evolved creatures at the top to fall off the pinnacle and roll back to the bottom to become primitives once again. The scene then de-animated itself back to its former frozen image! That was the surprise and I yelped with disbelief.
“So what d'ya think?” asked Warren.
“I think the message is that those who don't learn from history are doomed to repeat it forever,” I answered.
“I got that,” said Warren. “I want to know how the hell the artist did that!”
“You figured it out yourself, Warren,” I said. “The artist just drew the picture. You stared at it long enough to bring it to life.”
“Hmm,” he said. “I guess that explains the next picture then.”
Another surprise. It was a drawing of the ship we served on, the U.S.S. King, steaming along at flank speed with black clouds of smoke pouring out of its stacks. Staring intently at the image, it came to life, steaming suddenly in reverse with the smoke pouring backwards down the stacks until it imploded and sank like a stone.
“Wow!” I said, “There's no mistaking the message there.”
“Nope,” said Warren.
And we chorused in unison: “The King sucks!”

Progress Report, and a Plea

2010-03-10T15:40:00.000-08:00

It has been a typical spring week: rain, sun, snow, sun, snow, rain, sun...and that was just the last half hour. OK, not really. That was Monday. Today has been more sun alternating with clouds.
Rick has made the transition to peritoneal dialysis at home. It was not easy, and it still isn't, but he's getting more into the routine and it seems to be going a little faster and working a little better, as if his peritoneum is saying, “OK, you're really serious about this, aren't you?” and is starting to work with him.
He puts 2000 ml (2 liters – think a large plastic bottle of soda) of dialysate inside his peritoneum, after draining off 2000 ml, every four or five hours. This is the ideal. In fact, sometimes he can only drain 1200 or 1600 ml of dialysate; but last night he got 2600 ml out on his last drain of the day, and this afternoon he got 2400 ml out, so reality definitely does not conform to the ideal.
It's pretty much a full time job at this point, but at least we're not having to go to Seattle every day, which saves energy & money, not to mention time, and he doesn't have hemodialysis hangover. When he has hemodialysis he spends the next day recovering. It's hard on your blood to get pumped out of your body, run through tubing and filters, and then pumped back into your body. PD is definitely more gentle.
However, because Rick is doing it at home, he is not being monitored constantly for every level of every component in his blood, so PD is in that sense a walk on the wild side. The plan is to go in once a week, on Mondays, to check in with the Kidney Center and make sure he's OK.
We are now close to hitting financial bottom. We will have no income until Rick's disability kicks in at the end of May/beginning of June. He was hoping to get back to work once he was on PD, but that has not happened yet. Rick still has to go into Water District 19 to talk to Jeff, the manager. Rick says that tomorrow morning he will take out the trash, and then keep going, so watch out, Jeff. Rick's a-comin'.
Rick says that he is used to being poor, but he has decided he doesn't like having no money at all.
I will not passively hint around here, I'll come out and say it: if you've been thinking you'd like to send Rick some money, now would be a good time:
Rick Tuel, P O Box 238, Vashon WA 98070. “No amount too large, no amount too small.” Any amount would make me less afraid of losing the house.
We are most thankful to those of you who have already contributed to keeping our miserable butts alive. And on that strangled plea for dough I close for today.

Success!

2010-03-02T12:42:00.001-08:00

Or something like it. Rick has graduated from PD school! He is doing dialysis at home! We are happy! Yay!

The Deja Vu Blues...Again

2010-02-28T19:07:00.000-08:00

Short version: peritoneal dialysis is not working, again, and Rick has had to go back to hemodialysis. It's enough to make a good man go bad, or at least go in the living room and watch TV.
He goes back to PD class tomorrow to see if it's working now. Twice now he has had the experience of having it work for a couple of days, and then stop draining on the third day. He sees a pattern in this and wants to know what is going on, and why. As do we all. Everyone wants the PD to be a success - the doctors, the nurses, the kidney center techs, Rick, me, the dog. We're all for it. It just hasn't happened yet and we're not sure why it's not working. So he goes back to hemodialysis.
Of course it's nice to go back and see all the techs & nurses at the NW Kidney Center - it does become a little family over the months you spend there - but with all due respect and the greatest affection in the world for the staff, he wants to come home.
So we begin another week of trying to figure it out and make it work.
And that's the news from here on Sunday night.

Maybe This Time

2010-02-25T22:25:00.001-08:00

Hello, Boys and Girls - Rick is in his second round of peritoneal dialysis classes, and we are tentatively beginning to hope that he might be able to make the transition to home dialysis this time. This would be a good thing.
Meanwhile he's commuting to Seattle for training.
Our son JD pitched in today and moved boxes and furniture around so that Rick can have a private little dialysis space. It's not that private - I'll be here a lot of the time - but at least it's not public, as we felt the living room was.
We're both kind flattened by the last few weeks of relentless trips to Seattle and back, and all the activities, procedures, surgeries, dialysis, etc., we've had to do. So even though the news is good, that he will be coming home, we may be too exhausted and overwhelmed to get too chirpy about it. I am, anyway.
Stay tuned for further news flashes.

Living with Chronic Illness

2010-02-23T13:08:00.001-08:00

One of the upsides of Rick's illness is that we are spending more time together than we have in years - driving in to town for his appointments, surgeries, procedures, dialysis, and training in peritoneal dialysis. We talk about his illness, our hopes and disappointments, and so forth.
For a long time, I was the sick one, with my angina and obesity and fatigue and my ruined back and knees and shoulder. For about a year now, Rick has been the sick one - cancer and kidney failure really do ace everything else.
He's not happy being the center of attention in this way, believe me. And I've had to change gears in my head: now I, such as I am, have to be the caregiver instead of the poor sick one.
We are gradually learning to live with chronic illness. As I've been thinking about it and trying to make sense of things in my mind I've come up with this: when you face a crisis, you rise to the occasion, assuming it doesn't kill you outright. You do whatever you can and whatever you must to meet the challenge.
Usually such a crisis passes, and you get back to "normal," whatever that is, and go on. Kidney failure doesn't pass, at least not usually. I've heard of people regaining some kidney function and going off of dialysis for a time, but that is not the case with Rick.
So this is how it is with chronic illness. You rise to the occasion, but the illness does not go away. Then you rise to the next occasion, and the next. There is never a time when you can say, "That's over." Unless of course someone dies, but so far we've avoided that.
This is tiring and can become depressing. Depressing because the impossibility of the situation, the loss of control over your life, makes you angry, and there's not a damn thing you can do about it but follow instructions and do the best you can to stay alive.
So you have to adjust, adapt, change. The life you knew before is gone. One friend (thanks, Julie) advised me to deal with my grief. I hadn't thought of it that way before, but once she named it, I thought, oh yeah - life as I knew it is over. This is loss, and loss means grief. Duh.
Oh well. You get it when you get it, not one moment before.
Rick has been talking lately about how hard it is to believe he's an invalid, after being so physically active for all his life. This is a hard adjustment for him. A couple of weeks ago both of us had high hopes that he'd make the transition to peritoneal dialysis at home, but his pd catheter got blocked, and that was that. Now it is unblocked, so he starts pd class again tomorrow, and we hope that we don't run into another crisis which lands him back in hemodialysis again. We are both sure that doing pd at home will be calmer and less traumatic for him, not to mention the money we won't be spending on ferry fare, gas, and meals.
So all you of Rick's friends and family: I ask for prayers, meditations, white light, whatever you can send to him this week to lift his sagging spirits and usher him through the transition he so wishes to make, to peritoneal dialysis at home.
We will continue adjusting and adapting as we go along. Chronic illness is not an easy path. We know that now.
We thank you for walking with us. Your generosity and kindness have kept us going.

Friday afternoon

2010-02-19T13:57:00.001-08:00

It's a beautiful day in the neighborhood here - sunny and warm. I actually went out and dug up some mega-dandelions, and a few buttercups, and some of those little plants that produce tiny white flowers that become long thin seed pods that explode and blow seed all over when you touch them. It's easy to see why this little plant is so successful.
Also looked at the dead rose I need to dig out. This one was put there by someone while we were living at the other house, and while the rose is dead as a doornail, the quack grass that came with it is flourishing, so I need to get on that.
Rick went into hemodialysis this morning. It was a rough day for him. His blood pressure plummeted (86 over 67 at one point)and he passed out, only to be awakened by leg cramps. He came home looking ragged.
So not a great hemo day, and once more we are reminded why he wants to change over to peritoneal dialysis.
I am experiencing that bone-deep tiredness that tells me to lie down before I push myself into being carried out on a stretcher, so I'm going to go lie down for a while. Rick says he may join me. A session like that is exhausting, and hemodialysis is tiring even if it goes splendidly.
And so it goes.

Hello Again

2010-02-18T11:36:00.000-08:00

Well, dear hearts, I've been slacking on the blogs. Rick and I have spent the last ten days driving to Seattle and back every day. Well, I was driving the first nine days; Rick drove himself in to dialysis yesterday.
Things have not gone as planned. The peritoneal dialysis did not work out because Rick's abdomen stopped draining. It is draining again now, or at least it was on Tuesday, but he has to go to PD school all over again, next week, and is back on hemodialysis for the time being.
We have hopes that it will work this time, and he will be able to start doing pd at home. The area under our stairs is packed right to the top with boxes of pd supplies, so he's ready whenever he gets the go-ahead.
We are both exhausted at this point, but carrying on. The other day we both yawned at the same time and made noises. We sounded like a couple of wookies: "Aaaaaaahhhhhhrrr..."
You got to take your laughs where you can get them.
Having said that, I'm going to go carry on.

Mary Checks In

2010-02-10T14:27:00.000-08:00

Photo: Rick takes a picture (on his phone) of Mary taking a picture (on the netbook) of Rick taking a picture...and so on.

Greetings from the Northwest Kidney Center, where we are spending this week so Rick can learn to do peritoneal dialysis (hereinafter referred to as “pd”) by himself, at home. We are about half way through the program, which ends on Friday.
He'll do his first exchange at home tonight.
Here is how it works:
Rick now has a catheter in his abdomen. The dialysate (dialysis liquid) is instilled into his peritoneum through the catheter, where it remains for four hours. Then he does an exchange, emptying the liquid out of his abdomen, and putting in new dialysate for another four hours. Sounds simple. It requires 33 separate and absolutely necessary steps, each of which must be performed as if his life depends on it, which it does. He is supposed to do the exchange four times a day.
The beauty of this type of dialysis is that he will be able to do it at home, which means no more three-days-a-week commuting to the city for hemodialysis (blood cleansing). Rick is happy to be leaving hemodialysis behind. The tunneled catheter they've been using since last October hurts, and the fistula he was given to replace the tunneled catheter worked okay the few times it was used, except the last time when Rick experienced leg cramps and when he stood up to work them out, the needles in his arm came loose and he had an infiltration, meaning his blood leaked into his arm instead of staying in his artery, vein, and tubing. His entire left forearm swelled up and turned purple, and was one big hematoma for the last couple of weeks. And it hurts. So not pleasant on any level.
I wonder how many of these terms and how much of this process I should be explaining more fully to you civilians. Our life, as I recently moaned to a friend, has become so renal. Kidney failure and its treatments have become our language, our night and day, our rhythm, words, and melody.
Perhaps once we are home our family life will be a little less frantic, and there will be more writing. Hard to say at this point.
We wish to express our gratitude once again for the generosity and grace you have all shown to us. We literally could not have made it without your help. Thank you. I have been meaning to write thank you letters to everyone – unfortunately I have been bowled over by the demands of the moment, and a large dose of depression. It is no mystery why I've been depressed, and why I'm still fighting it. These are hard times, ladies and gents, no kidding.
Having some kind of income again will make a huge difference. I have found money to be a very effective anti-depressant, and much faster acting than the popular SSRIs. But not as long-lasting.
OK, that's about all I have to say today – wishing you all the best.

Kidney Failure Humor

2010-01-18T13:19:00.001-08:00

In Seattle with my friend Becky last week, we hit the Barnes and Noble in West Seattle, where I found the complete New Yorker cartoons book on the sale table: $9.99 for the book and accompanying DVD with ALL 73,000 plus cartoons that ever ran in the New Yorker. Of course I snatched it up.
Rick was reading it this morning and came across this George Booth cartoon, which, Rick said, he could really relate to.
He then made a copy of the cartoon and added himself to the picture – and you see the result here.

The Next Steps

2010-01-11T23:53:00.001-08:00

Rick writes:
1/11/20, Monday
The long-awaited meeting with Dr. Oliver and Dr. Pham went well, with Doc Oliver in her usual cheerleader style. “You look fine! You're doing just great, you guys!” Then she upped my heart meds to two in the morning and one at night because my B.P. Was 170/90. Since she took us in early we had an hour & 45 minutes before our/my appointment w/Dr. Pham so we grabbed an early lunch at IHOP.
I've been having some annoying discomfort from the Hickman catheter – sharp stinging pains punctuated by dull oppressive aches – for about a week and a half now. Dr. Oliver removed two sutures around the exit point. They weren't necessary any more so maybe that will help. She had to dig kind of deep to get one of them loose. She also built a small fire under the Polyclinic folks to get cracking on externalizing the peritoneal catheter and starting up the classes for using it. We made a tentative date for our next visit to her office on Feb. 10th.
Once we got to Dr. Pham's, the ultrasound technician took me in and got some pretty good readings on the progress of the maturation process currently taking place upon the vein they connected to the artery on my fistula. At its widest point (which is at the arterial connection itself) the blood flow is moving at the astounding rate of 4 meters per second! By the time it reaches the narrowest point, up by the biceps, it's down to .53 meters meters per second (blood pressure at Dr. Pham's was 150/83).
Dr. Pham set the date for externalizing the peritoneal cath on Feb. 8th or thereabouts and turned me over to Trish, her surgery scheduler. Trish was apparently the recipient of Dr. Oliver's small fire earlier today and wanted me to appear for surgery at 05:30 a.m. On the 8th, same being scheduled for 07:30 since I am to start P.D. School on the 9th and will need 24 hours to purge myself of the effects of the anesthetic before starting class!
One thing I'm not clear on is whether they'll remove the Hickman catheter at the same time; also looks like we get to re-schedule the 2/10 appointment w/Dr. Oliver.
Today's most delightful coincidence: as we passed the Bethlehem Steel foundry on the West Seattle freeway, one of the “cloud factory” smokestacks blew a perfect smoke ring into the sky, a good eight feet in diameter and at great velocity!

Favorite anonymous quote of the week:
“He has the strength of character to refuse to learn from past mistakes.”

What Would You Name This Decade?

2009-12-31T11:02:00.000-08:00

Rick writes:
12-31-09, Thursday
The last day of the aughts and the last day of the year nine which as far back as February began to hint that it was going to be a real gall stone of a year for us.
And so it has been, but in an odd turn it paradoxically redeemed itself in many ways as well.
Newspaper pundits, casting about for a pigeonhole name for the first decade of the 21st century, have so far come up with the Big Zero but only out of a sense of frustrated disappointment.
Well, they've got a whole year to come up with something really appropriate and I submit they should not go it alone. This is a democracy after all. They should put it to the populace: initiate a contest and pick the best entry at the end of the year.
How to name a decade that began with a horrific terrorist attack and ended with a series of bailouts? Any combat pilot can testify that's a poorly planned sequence of events, like closing the barn door after the horses have escaped.
The Barn Door Decade. That's my entry.

Niki Calls; Rick Dreams

2009-12-22T16:54:00.000-08:00

Photo by Niki McBride, taken on her cell phone "looking north" from Highway 97, some where near Weed, California, perhaps
Rick writes:
12-21-09, Monday
Niki McBride woke me up with a phone call from Tule Lake on Hwy 97 through California. She and Dan are headed for L.A. to see Heather and Tule Lake reminded her to give me a call. Ha! Cool!
Mary's note: and a bit later when I checked email, I found this photo from Niki
Back to Rick:
12-22-09, Tuesday
Got up late - fooled by a dream which kept insisting that I had a day off today from dialysis. The voice of reason kept trying to penetrate my mistaken dream state, without success until finally something yelled, "Get yer ass out of bed and go bleed!

Rick is Thinking Deep Thoughts

2009-12-17T18:59:00.000-08:00

Photo: Rick is in stitches
12-16-09, Thursday
Today Jean brought in a Power Point program on her laptop, getting down to the nitty-gritty on the subject of getting on a kidney transplant waiting list. Since it appears that, due to the issue of bladder cancer, I will have to wait a minimum of two years to become eligible, there's no time like the present to begin working my way through the details. Apparently the details will probably easily take that long to deal with.
So here I've been thinking about getting back to work once I get rolling on the peritoneal dialysis program, to what degree I don't know. I need to get together with my colleagues at D#19! Peritoneal dialysis I can do at home will make returning to work possible but somehow I don't believe I can ever reliably go on call again, at least without help from Armin and Keith. They've been on call every other week since Oct. 5th when I lost my kidney functions.
Without going back to the on-call list, I won't be of much use to WD #19. The kidney center pointed out that my miserable condition assures me of medical coverage forever but an income will be necessary too and social security will only be about $1,000 per month.
It's true I've been looking forward to some kind of retirement for almost 10 years now, but I'm no different than any other working stiff at this point – at least throughout the economic train wreck that the bankers and politicians have gifted us with I've been one of the lucky ones to keep my job. Trouble is, now I need to choose between that and my life which doesn't look very promising to me or my loved ones on a pauper's income.
Well, the Kidney Center certainly understood my concerns and bless their blood-cleansing souls, they're behind me all the way. It's just that I have to be the one to make the decision.
The sensible decision is to spend the rest of my life in the hands of the medical industry and the insurance that makes all that possible – to become dependent on retirement, disability, and welfare.
It's just hard for me to toss out 40 years of working for a living. The folksinger in me says, “It makes a long time man feel bad.”

Rick's Version of the Last Two Weeks, Part 2

2009-12-17T00:22:00.000-08:00

Dec. 5, '09 sat.
04:30 My guts feel like they're going to fall out. Everything hurts like hell. I can hardly move. This could be the day that dialysis kills me off while trying to save my life.
10 days to heal! 8 more to go!
Drew went down sick with a cold yesterday. What wrecks we all are!
Oh yeah – almost forgot. Temperatures have dropped into the low 20s and the roads are iced up.
By golly, I'm glad this week is over! I've been not looking forward to it for quite some time now.

Dec. 6, '09 Sunday
7 days to go. The dressing over my peritoneal catheter is only about 2” x3” and like the one over the fistula, is a piece of absorbent adhesive that's stuck to the area over the incision like an abalone to a rock! I can't imagine how it can be removed except by amputation.
At any rate it feels like both dressings actually have nerves which tingle and tickle maddeningly when even a breath of wind blows over it. Maybe I'm naive to think the PD cath will ever quit hurting (like when I cough or sneeze).
Sigh. Let go. I must continue the practice of learning to let go.
Still, as I examine the fistula on my left forearm, I notice they didn't bother to shave off any arm hair before placing the death grip adhesive dressing. That'll be fun to rip off when the time comes.
Somewhere in my worst nightmare I hear them saying, “Don't worry. You'll be under general anesthesia when we do that.”

12/7/09
Mary writes: 25º at 8 a.m. Dog has been FED. There are two open cans of dog food in the refrigerator.

Allysan writes on sticky note: “Deer LOLO I HOOP YOU GET BEDr: From Allysan”

Rick writes:
12-7-09 Monday (cont.)
6 days to go and I'm counting every minute. Morning is the time I dread the most since that's when it's time to purge the lungs. It's already becoming less painful for the belly muscles to cough or sneeze or even laugh.
Having yesterday and today off is a wonderful reprieve. We were even able to put up the plastic Christmas tree yesterday while Allysan was here so everything worked out just great! Today Mary had to go to Tacoma for a root canal job so I'm just hanging out around the house. Cindy came over to volunteer a house cleaning and wouldn't take no for an answer.
Rick:
12-8-09 Tuesday
Hi, Love – I'm off to West Seattle. Pup Pup went outside and I fed him breakfast.
5 days left in the marine engineer-approved healing schedule and it actually is feeling pretty good at this point. I still have to hold my belly to support it when I cough or sneeze but the general overall effects become less drastic every day.
I went up to get the paper and noticed the dome light was on in my truck – the door wouldn't shut for some reason – so my battery was dead! Fortunately noticed it while there was still time to deal w/it.
Seize you later,
Love, Yr. R
Mary: What kind of God allows these things to happen? I'm off to sing at the nursing home – wearing a low cut blouse and freezing. Hope all is going well on your Big Adventure.
Love, M. also too yesh

12-9-09 Wednesday – Today's paper predicts that there will be only a 4º difference between the high and low temp for that day (41-37º; Low – 33º
We're off to see Dr. Oliver and Dr. Pham to see how my latest body piercings are doing.
If they don't decide to tear them out and start over again, I'm 4 days away from the 10-day marine engineer approved healing time. Doing pretty well, too, except for an opiate-induced case of constipation. Snarl!
(Here there is affixed to the notebook page the large pink “WED” sticker, next to which Rick has written “30 years and counting...”)
These are “screening tags.” In the parking garage at each one of the clinics we go to, there is a screener standing in front of the elevators who asks everyone entering the building if they have “a cough, a fever, or sneezes.” If the answer is no, you get a screening tag that means you're not contagious. If the answer is yes, you get a screening tag and a paper mask to wear while you're inside.
Dr. Pham removed the bandage on the fistula and PD catheter so I can see what they did now. It turns out she did shave my forearm before putting on the bandage and they actually both came off pretty easily.
Dr. Pham grabbed me right away as soon as I got there and breathed a sigh of relief when she saw the fistula incisions.
“I worried about it all weekend,” she said. “I had such a hard time getting the connection to feed right. The artery was so deep...” She breathed another sigh of relief. “...but it's good. A strong, vigorous pulse.”
She patted my cheek. “You're my hero!” she said.
Prior to seeing Dr. Pham, we paid a visit to Dr. Oliver who also said everything looked great and we discussed training for me to use the PD catheter, if I was comfortable with taking that step (which I am).
So, we made appointments @ Dr. Oliver's for Jan. 11, '10 @ 11:20 a.m. And Dr. Pham for Jan. 11 @ 13:00 for an ultrasound scan and 13:45 for Dr. Pham herself.
I don't know what the 13:45 appointment will be for but today I discovered my PD catheter is completely buried underneath my belly epidermis and will need to be surgically extracted before I can put it to use.
Another owie for me.
Also mentioned that I've been encouraged to get on the kidney list but I understand the requirements are pretty demanding & I may not qualify. Dr. Oliver said, “Oh no, you'd be a great candidate except for the bladder cancer issue!”
Well, I'm sorta in remission at the moment, I think. She said I may have to be in remission for at least two years but she would double-check on that.
12-10-09 Friday
I'm off to Water District # 19 (for the first time this Volume*) to talk to a lawyer regarding a long standing leak we fixed on Dockton Road last August.
Mary took the Honda to Burton Shell to have the front brake pads replaced today.
*This Volume of the table top diary. We just started Volume 6.
12-11-09 Sat. Morning temp. 28º w/clouds
Last day of dialysis for this week. Two whole days off. I might need them, too. The weather forecast is dithering between rain and snow. The warm-up period is supposed to start rolling in tonight when the warm jet stream arrives from California and starts mixing it up with the cold arctic air that's leaked into the state through the Fraser River Valley for the last 10 days or so.
For now, all is quiet and shrouded in clouds. Not a breath of wind.
On Wednesday the 9th, high and low temps for today were predicted to be 37º-33º; actual high & low today 37º-30º.
From an article in today's Seattle Times: SUB UMBRA SEDE = “sit in the shade.” The motto of the principality of Seborga, courtesy of Prince Giorgio Carbone I, R.I.P, Nov. 25, 2009, aged 73 years.
12-15-09 Tuesday
Oh, this is sad. Drew's Ibanez guitar, his favorite, the one he's had since high school, was stolen at one of his gigs last weekend.
I drove myself in to Di-Alice's Restaurant today since I'm feeling so perky and all these days. For the last several days the weather reports have been hedging their bets, saying snow is on the way or maybe snow with rain or maybe just rain but when I headed out this morning it was 48º and definitely raining and looking altogether northwestish. The great Northwet has returned.
My left hand and forearm has slowly been transforming itself into someone else's appendage, growing larger and larger. Actually, it would be more accurate to describe it as swollen. Although my fingers have stayed the same size, the knuckles on my hand have all but disappeared, the wrist and forearm have thickened and hidden all the formerly visible veins except the one which is now being fed by the artery which is now connected to it via the fistula. That vein is now about the size of a soda straw and pulsing like it has a life of its own. It pulses and vibrates like an electric wire with every heartbeat. The base of my thumb has increased in size and is sore to the touch.
Once the fistula has “matured,” i.e., inflated to accommodate the increase of blood flow supplied by its new arterial connection, it will be ready to use as a hemodialysis connection to replace the Quinton catheter to the jugular vein in my chest. I'm still fairly clueless as to how this is supposed to work except that it looks painful. Some of the other patients have theirs used every time they come in and it seems to take about half an hour to 45 minutes to access it and get it working. I don't like the looks of it. When I arrived this morning there was a blood trail from the front door, through the waiting room and into the dialysis room (about 25 feet) where a patient's fistula had popped as he was exiting the facility. BRRR!
When I got home, there was good news. Drew's Ibanez was not stolen. He sent a flood of emails to all the groups that played at the gig last weekend and got a flood of returns, including one from the stage manager of the event who said he had Drew's lost guitar locked up in the office. Drew drove over this evening and brought his baby back home. YAY!

Rick's Version of the Last Two Weeks, Part One

2009-12-16T00:09:00.000-08:00

Rick's Writings from the TT Diary, 11/28 to 12/15

Mary's prologue: the last two weeks have been busy in the extreme, so I'm 'way behind on my typing duties. So hunker in for a good long read, and here's the words from Mr. Tuel, Himself, with the occasional odd note from other family members:

11-18-09, Saturday
The week coming up will end off with me sporting no less than three alien devices warming their way through my arterial/venous/peritoneal systems and spaces. I guess I've been looking forward to peritoneal dialysis because it would get us off the hypodialysis machine ($974 a pop Editor's note: yes, but it is covered by insurance) and away from having to rely on the ferry boats and their continued depleting expense.
Jean has been pushing me toward getting on the kidney transplant list instead, something I hadn't been thinking about much.
12/2/09 Wednesday
JD writes: “JD FED JIVE :-) NOW JD IS GOING TO WANDER AROUND :-p”
Rick picks up:
Dialysis today & yesterday. Murderous leg cramps yesterday. I'm still limping today.
Tomorrow is fistula and peritoneal dialysis catheter installation. Not looking forward to this but some good news came today. Pathology report on bladder biopsy came in today. It is NEGATIVE (which is good)!
Dec. 3, Thursday – Slice & Dice Day
I spent Tuesday & Wednesday at the N.W. Kidney center piling up hours in the chair in preparation for today. For the fistula & peritoneal dialysis catheter surgical procedures. Doctor Pham wants potassium blood levels to be neither too high nor too low – or else they've been known to scrub the job on the spot & re-schedule until all is put right.
Woke up @ 04:00 with a beautiful pre-dawn full moon shining gloriously through the bedroom windows. This lovely display had to stand in for my usual coffee & breakfast which I couldn't have prior to surgery. Sighh...they want you on the table hungry and dehydrated for their procedures.
Since I'd been up at 04:00, they also got me fairly sleepy and, after lab work & I.V. Insertion, they wheeled me into the O.R. @ 12:45 and before I knew it, I regained consciousness in post-op almost instantly. Miraculously, in that brief period of time, the fistula & P.D. Catheter were in place. Even more miraculously, after that brief instant, the nearest clock said it was now 14:20. They wheeled me into my very own room on the 11th floor with a lovely view of the Cascades and foothills. Room 1162, phone number 215-XXXX. I highly recommend it!
Mary and I had a late lunch together and I decided to stay the night, just to be on the safe side. I fell asleep at last, much the same as I woke up this morning, a beautiful full moon rising in the east and and shining in all its glory through my 11th floor window. It ascended into the darkening eastern sky from behind the shelter of the Cascades while I absorbed a Philly sandwich and a quart of ice water.
04:00 once again, Friday, Dec. 4th: I didn't stay asleep for long and, hours later, here I sit wondering where the quart of ice water went. Why don't I have to pee?
There's a new innovation for preventing blood clots from forming in the legs of bedridden surgical patients – inflatable cuffs are strapped to the ankles that fill with air and empty out about three times a minute. The problem is that one can't get any sleep with them on.
So – I'm not sleeping and I'm not peeing.
Meanwhile, as time goes by I get these pain spasms from the P.D. Catheter site as well as throat pain from the breathing tube that was in my throat during the surgery. Sips of ice water are soothing but I'm still wondering where that water is going.
06:30: My RN (Barb) had her assistant Weyni walk me around the the floor to try and get my cancer-free bladder to give up its secrets. Weyni also did a bladder scan and it revealed there was about 350 Ccs in there, although I have absolutely no urge to purge. Neither do I have the ability.
Barb and Weyni had to go deal with the rest of the floor but they called Dr. Pham's office before they left. Dr. Pham sent one of her staff, Minday, over to pay me a visit. Mindy said the bladder issue was likely due to the anesthesia. Should clear up in about 24 hours. Then she checked my fistula and gently placed two fingers over the arterial connection. “Ooh,” she said, “it's beautiful. You can feel it vibrate.”
She showed me where to touch it and although I couldn't feel a vibration, I did feel a strong steady pulse rate right where they connected the artery to a vein.
She put her stethoscope over the artery and let me listen. The pulse was loud, deep, resonant and rhythmic. Coolest of all, I can put my wrist up to my ear and hear it pulsing steadily away, like a propeller on a ship, echoing through the water.
07:00: Surprise! Doctor Oliver dropped by and checked out the fistula and the P.D. Catheter. Her face broke into a broad grin.
“They're beautiful,” she said, beaming.
I sort of shared the moment and did not say: “They hurt like hell and I can't pee.”
After Dr. Oliver left I tracked down the floor nurses and suggested a Foley catheter by they felt it would all resolve itself on its own.
08:00: The new RN on duty is Helen. She lives on Vashon, somewhere in Burton. She told me to order some breakfast and drink more water so that's what I did.
Mary called around 10:00 to say she was on her way in to pick me up. I went out to the nurse's station and told Helen at which point she relented and agreed to empty me out with a Foley catheter before discharging me.
Phew. What a day. Or rather, what a couple of days.
(Here he affixed the label he was given when he entered the hospital on Thursday, which said: “I was screened on Thursday,” and below that he wrote, “...and I've been screaming ever since.”)
(This is only about half of what he's written. TO BE CONTINUED.

Two Illustrations by Rick, One Rude

2009-12-09T17:19:00.000-08:00

First the status report: after about six weeks of dialysis, Rick is looking and feeling better. He has his fistula and his peritoneal dialysis catheter installed, so we have hopes of switching to dialysis at home soon, and that is exciting. But that's not what this posting is about. This posting is about two of Rick's drawings.
Mind you, Rick has always told me that he figured he couldn't ever become a popular cartoonist because so much of what he was attracted to drawing was obscene. Well, maybe.
From the top down, I hope (I always forget that when I attach photos they stack up at the top of the column in reverse order, so I'm starting with the one I attached last):
The Meaty Urologist - Rick did this drawing twelve years ago, during his bout of prostate cancer. That was his first encounter with a urologist, and while listening to the weather report one night after he heard the meterologist introduced, well, as night follows the day this drawing came out. He found the drawing today while looking through old notebooks, and through the wonder of computers, scanners, and Photoshop Elements, here it is.
Second, an up to date drawing he did of his fistula stitches. We went to the doctors for his post-surgery check-up last Wednesday. If you have gone to any hospitals or clinics lately perhaps you, as we, were greeted by screeners who wanted to know if you had any flu symptoms. When we said no, we were each given "WED" stickers to put on our clothes to show we'd been screened. We both looked at them and said, yep, wed, for over 30 years now, and Rick put his sticker into the tabletop diary, then did this drawing of the diary, sticker, and his left wrist and hand, with annotated incisions.
If you touch his wrist between the two incisions (one over the artery, one over the vein), you will feel the blood pulsing through the connection between them, with a thrilling vibration. Rick understands this as the Bernouli effect (I think), the passing of flow from a larger diameter pipe (the artery) to a smaller diameter pipe (the vein).
He has written quite a bit in the tabletop diary lately, and I need to catch up. I also need to catch up on the Oatus Log, which I've moved to its own site:
http://oatuslog.blogspot.com/
It has been a goofily busy couple of weeks. Dialysis, of course, plus surgery, follow up appointments, and, not having enough to do, I had a root canal. I'm hoping to get back to more regular posts.

Waitingish; and GOOD NEWS

2009-12-03T14:03:00.000-08:00

The picture is of the Lobby Cafe and the gentleman at the next table who was asking about my netbook, and his son (I think)
Greetings -
I'm in the Lobby Cafe, a place I frequented quite a lot when Rick was here the first week in October. They have a shrimp salad that is not great cuisine, but gets the job done.
Rick got taken in for surgery around 1. Hospitals have become compulsive and zealous about making sure they're doing the right procedure for the right patient. He was asked at least four times for his name, birth date, and why he was here. They had the answers on a chart right in front of them. They just were makin' sure he was the right guy in the right place.
This is the fourth time he's had a surgical procedure this year.
Medical technology is always on the move, and today they tucked him in with a "Bair Hugger." This is an air blanket that is filled with warm air from a shop vac looking thing, which ten seeps out of tiny little holes in the paper blanket bottom, keeping the patient roasty toasty warm. This is wonderful for Rick, but the hospital's concern is that his core temperature shouldn't drop.
So now I'm waiting. They said it would be "twoish hours, maybe threeish," so I am waiting-ish. From the cafe I'll shlep over to the surgery family waiting area, a large area just off the main lobby with couches and chairs. It has become familiar territory for me this year. I'm hoping to nab a couch where I can stretch out and nap while waiting to be paged by Rick's surgeon, Dr. Pham.
The surgery he's having today: he's having a PD catheter put in to his abdomen. This is a port for peritoneal dialysis (hence the PD), which he will be able to do at home. Yay. He's also having a fistula installed in his arm. That will be his backup if and when he needs to do hemodialysis.
Both of these ports will need to "mature" for a while before they can be used, so we'll be going to the Kidney Center three days a week for a while yet.
Now, for the GOOD NEWS: Rick received a call from Johnny at the urologist's office yesterday. All the bladder biopsies taken the day before Thanksgiving were NEGATIVE. So Rick's bladder is clean of cancer at this point, as near as we can tell. He goes back for a check up in February.
So that's the news from here as of this afternoon. If you don't hear anything more soon, assume everything's OK.
Blessings!

The Holiday, the Clammy Damps, and Japlish

2009-11-27T13:18:00.000-08:00

From the tabletop diary:
11-26-09 Thurs. (Thanksgiving day for the normal folks)
Oh boy ~ our tails are draggin', as expected. I was looking forward to having tomorrow off but Mary noticed a black spot on the top of my left ear last Sunday while giving me a haircut. The soonest appointment I could get at Doc Weispfenning's was tomorrow @ 13:00.
Dialysis today; ear surgery tomorrow and dialysis all day Saturday.
Next week, surgery on Thurs., Dec. 3rd to install fistula & peritoneal catheter except this week, NW Kidney Center changed my dialysis days to Tues., Thurs., and Saturday – Thursday being the same day I'll be in surgery.
All these appointment are just turning into a train wreck worthy of a Charlie Chaplin movie.
LATER: We went in at 10:30 this morning which would make me think we would get off earlier but some how we still got home around dark. Actually the days are continuing to get shorter and the kidney center had a small army of patients to treat today so disconnecting took a while.
About 12:55 my nurse, Yeong (pronounced “young,” a nice Korean girl), was cleaning the tunnel catheter and changed the dressing when I suddenly went into a low blood pressure incident that turned me cold, sweaty and in danger of passing out. Don't know what happened but it was real unpleasant and took about 15 minutes to recover from after they turned the blood pump down from its usual speed of 300 to about 150. After I came around, I slept the rest of the day, went home and felt wasted until I finally gave up and hit the sack around 9:00 p.m.
11-27-09, Friday
The head floor nurse is Jean, a third-generation Japanese-American woman who is working to re-learn her ancestral language so we have fun practicing what little Japanese we both know on each other. I warned her that my memory of the language goes back to the time we lived on Kyushu as part of the post-war occupation forces. As such, the language I learned was a mixture of pidgin Japanese-English which evolved at that time and in that place. Since it was a tentative combination of two languages developed in a first-contact situation, I speculated that it was probably dead and gone by now but Jean's eyes brightened up and she said, “Oh no – it's still in use! It's called 'Japlish!'”
In some cases words had to be blended to describe things the Japanese had never seen before and therefore had no words for them. Since they used chopsticks there was no word for “knife” or “fork” and the words “ni-fu” and “forku” evolved. Likewise the word for milk became “miruku” in Japlish because the Japanese had no letter “L” in their language and couldn't pronounce it except as an “R” sound.
One phrase Jean had never heard a Japanese use was, “Ah, so,” which has become a rather contemptible American stereotypical phrase and Jean was equally contemptuous and offended by its use, as it tended to be racially demeaning.
I had heard the phrase all my life. It was indeed brought back to the U.S. By the troops in the Pacific theater – but only as a corruption of a phrase I heard as a child as a form of Japlish, perhaps. It was: “Hai, so desuka. Wakarimas.” I took it to mean, “Yes, I see. I understand.” It was an American imitation of a phrase they couldn't fully pronounce and so it became an abbreviation.`

A Little Good News for a Change

2009-11-25T23:58:00.000-08:00

It's Thanksgiving Eve, and we have a lot to be thankful for. Rick is thankful to still be alive this year, as are we all thankful that he is alive. Here's the good news: Today he went to see the urologist and the urologist did not see any cancer in Rick's bladder.
Let me say that again: he did not see any cancer in Rick's bladder.
He took a biopsy, and we'll hear about that in a week or so, but right now the word is good.
We'll spend Thanksgiving at the NW Kidney Center, with Rick having dialysis.
Wishing you all a wonderful and happy Thanksgiving, and a blessed Advent.
And that's all I have to say for tonight.

Important Correction!

2009-11-22T12:13:00.000-08:00

A while back I told people that you could donate to Rick through the Church of the Holy Spirit in order to get a tax deduction. I have been informed in no uncertain terms that NO, the Church of the Holy Spirit will not accept donations or pass them on.
So - I'm sorry. I was misinformed.
If you wish to send a donation towards defraying Rick's considerable medical bills, please send it to:

Chase Bank
P O Box 510
Vashon WA 98070
Attn: Rick (Mark E.)Tuel fund

or directly to us:
Rick Tuel
P O Box 238
Vashon WA 98070

Now I'm going to go edit the post with the wrong information.

Our deepest thanks to all who have contributed. Thank you.

Rick Writes Again

2009-11-20T14:34:00.000-08:00

11-19-09 Thursday
This is the last week for awhile that will be simply three days of dialysis. Next week begins dialysis plus one day devoted to a bladder cancer cystoscopy with no time off for Thanksgiving.
The NW Kidney Center has a policy of “no eating” during dialysis but so far as I can see, I am the only one who complies w/this rule. Since dialysis strips everything out of the blood, people get hungry during their four hours in the chair.
Nonetheless, one thing I've noticed since beginning treatment is that everyone is chomping and chewing when I arrive and it goes on all day. For this reason I've dubbed the place, “Di-alice's Restaurant,” where you can't have anything you want.
I admit that I sneak jellybeans in and try to be discreet.
Another problem is that after about 2-1/2 hours of dialysis I start to become cold and by the end, I am shivering like a leaf in a windstorm. My shaking and shivering sets off the dialysis machine to alarm which has to be cleared by an attendant and adds time to the treatment. So – I try to cover myself early on with a blanket and hold onto the blood lines to keep warm and covered up for as long as I can. The coldest spot is the Hickman catheter in my chest so I keep that well covered and insulated.
Yesterday I was informed that I have to keep the Hickman and its blood lines exposed and visible at all times so I'm just god damned bound to freeze and starve and go overtime on treatment.
Tomorrow I'm bringing in hand and body warmers to stuff in my pockets.
Staff tells me I'm still anemic after a month of treatment which may be the reason I can't get warm as I'm minded to eat more protein (just not here at the dialysis center).
My creatinine level is down to 7.5 though so that's good. It's down from 13.5 so practically speaking I'm still functionally a dead person, just less so than before.
* * *
Mary adds: This is Rick's table top diary entry from yesterday. Today he's in the chair being dialyzed, with his hand and body warmers and a heat panel (overhead infrared) turned on. He also put a fleece blanket under himself, as well as over. We'll see how that does for him.
We had a lesson in phosphorous and calcium today. When you're in renal failure, you have to consciously synthesize, control and adjust things in your body to make up for all the many tasks that kidneys perform, like governing the Pth output of the parathyroid gland. Too much Pth starts sucking calcium out of your bones, and at our age that's no joke.
Interesting – I added a dingbat, and now the program inserts a line between every paragraph. Don't know if that will carry over to the blog, which tends to remove all formatting from your text.
We are living with lots of rain and wind this week, blowing in off the Pacific to drench us. We haven't had one of those full-blown cyclones that usually blow in about this time of year. Not yet. So far we have not lost electricity at our house.
Next week, as Rick said, will be a full week – dialysis on Monday, cystoscopy on Wednesday, dialysis on Thursday and Saturday. The cystoscopy will give us an idea of what's going on with the bladder cancer, which has been on the back burner since we started dealing with Rick's renal failure. As Rick says, we cannot see beyond the horizon of next Wednesday. We don't know what that exam will lead to. I of course want to hear the “r” word: remission. But that's just my hope and prayer. We'll see.

Log of the Oatus: Ft. Bragg

2009-11-18T10:36:00.001-08:00

Nov. 5, Fri.
After breakfast, two fellows by the name of Allen and John came by from the Albion Ridge Ranch, which I guess must be down around where we thought Felix jumped ship. They too spoke of engines and left saying they would return with more information.
When we left to find Brian and his truck, we discovered roads (or perhaps ruts is more accurate) far too impassible for Oatus's bulk. When we finally located his truck, there was no one home so we followed a path down to the bottom of a ravine and up the other side where we found an abandoned chicken ranch to explore.
Later in the afternoon another of Granny's many friends dropped by to use Everett's truck to haul a load of trash to the dump. Butch was his name and at the moment he is a candle maker by trade.
By way of another trade, we learned of another engine that was being housed at present in an old 1952 Plymouth that was quietly returning to the soil on his property. If we worked fast we might be able to rescue it before it disappeared altogether. We made a date for tomorrow.

Nov. 6, Sat.
Man, the weather has been low and wet lately! For some reason, my own system has been closely approximating the conditions of my sign, which is Air (I'm a Gemini); for some reason all the air in the area is heavily congested. Wheeze~!
Late in the morning Butch came by; we loaded tools, batteries, and Nigel the dog, and sputtered off to visit the old Plymouth.
The land is truly good here; Autumn has nipped into these hills quite nicely. Butch's property is blessed with an old Gravenstein apple orchard and I happily munched on a few while wandering about in the rain.
We were too late to help the old engine (which offered no response at all) so Butch built a fire out back and began melting candle wax in a big cauldron. We drank tea, ate fruit, helped put wicks in 140 quarter-sized candles, and departed with a glow.
Chris and I got back to the Red Shanty just in time to go take a sauna with Everett, Berta, and Unkie, a great relief for us Trucknics! We've been growing progressively smellier for a week now. This is the only way to get clean in Fort Bragg at the moment since the whole town is on water hours. I thought I left this sort of thing behind when I got out of the Navy!
Perhaps the people who operate the sauna also run the local water system. Theirs is the only place in town that has water and the whole town is lined up to bathe on a weekly schedule, at $1.50 a pop! What a sweet deal! Everett, Berta and Unkie's time slot is on Saturday, from 7:30 to 8:00 p.m.; not only did they get us admitted as their guests, they also paid our way!
I think they wanted to be sure that we wouldn't miss out on an opportunity to clean up and in their kind, tactful way, decided to go ahead and foot the bill in case we didn't happen to have the gate fee. Since we have no way of knowing how long we will be their guests, this probably amounted to an investment in their peace of mind and was therefore well worth the money! As I noted earlier, we've been growing progressively smellier for a week now.

Nov. 7 Sun.
Today we thought to recuperate some. My raging head cold has opened a branch office in Chris's head and he awoke this morning snuffling, spewing and snorting. We got a fire going and kept to our bunks, attending to our individual afflictions.
Not for long though! Granny came out and enlisted our aid in picking up an old freezer over at somebody's house. We ended up doing it mostly by ourselves and with effort and resolve managed to drag the damned things back to the Shanty in one piece; then it was back to the truck to chase continuing drips in the roof; also the nose.
Because it's Sunday and telephone rates are low, I called my folks to let them know we are in port for repairs. That's the news for today.

An Update, and a Commercial

2009-11-13T15:00:00.000-08:00

(There is a diagram of a fistula under the 3 Damp Duck picture which comes forward when I click on it - I don't know why it is layered instead of in the text)
Dear Hearts and Gentle People -
There is a little news, and information for those of you who have asked, “Can I do anything?” Yes, yes you can. Here's how:
Julia Lakey has opened a benevolent fund for Rick at Chase Bank, P O Box 510, Vashon WA 98070. You can donate funds to help Rick deal with his mounting medical expenses. Just note on your check that it's for the Mark E.(Rick) Tuel fund.
OK, at this point I originally said you could send donations via Church of the Holy Spirit and get a tax deduction. The Church has informed me that I am wrong about that, and donations need to go to the bank fund, not to the church. I apologize for getting it wrong. I did not know that this policy had changed.
You can send Rick a card at PO Box 238, Vashon WA 98070. Big thanks to those of you who have already done so. The cards cheer him up.
Also, if you want to get something cool for your money (and who doesn't?) you can purchase a CD of Three Damp Duck, a trio consisting of JW McClure, Rick, and Mary, at the website www.threedampduck.com. JW has set this up, bless his heart, with the intention that all proceeds go to Rick's medical expenses. I will try to attach a photo here so you can see how young and cute we were 30 years ago.
Huge thanks to Water District #19, Rick's employers and colleagues, who have so come through for him, and the Church of the Holy Spirit, which has given prayer, friendship, encouragement, and food. I can't say thanks enough, not without starting to leak, anyway. Thank you. We are being sustained by grace right now, and these people and our other friends and family are conduits of that grace.
Which reminds me: thank you for the medicinal chocolate, Diane. It is sustaining me as I type.
Rick is in class today. He drove all the way to Auburn by himself, and will drive all the way home, God willing, although I did set up a back up plan for him to call if he feels too tired or stressed out, in which case our friend Roy Bumgarner will drive me over there so we can bring Rick home.
The class is on “cement asbestos pipes.” You know that line in Randy Newman's theme song for the Monk television show: “Do you know what's in the water that you drink? Well, I do. It's a-mazing!”
That line could be written by a water guy.
The class is for CEUs (Continuing Education Units) which Rick has to get every three years in order to keep his water district operator certification. Rick has to have that certification in order to work for Water District 19. And here's the good news: he might be able to work for them again, at least on a part-time basis. This thought has given him hope for the first time since the world came crashing down on October 5.
So...would anyone out there like to train Rick on CAD software? Seriously. Contact us.
He continues to have dialysis three days a week, Monday, Wednesday, and Friday at present; because of his class today he'll go in for dialysis tomorrow.
On December 3 he'll have surgery to have a fistula formed in his arm. A what? You say. That doesn't sound so good – no, it doesn't. Here is a description from the website of the National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC):
What is an arteriovenous fistula?
An AV fistula requires advance planning because a fistula takes a while after surgery to develop—in rare cases, as long as 24 months. But a properly formed fistula is less likely than other kinds of vascular access to form clots or become infected. Also, properly formed fistulas tend to last many years—longer than any other kind of vascular access.
A surgeon creates an AV fistula by connecting an artery directly to a vein, frequently in the forearm. Connecting the artery to the vein causes more blood to flow into the vein. As a result, the vein grows larger and stronger, making repeated needle insertions for hemodialysis treatments easier. For the surgery, you’ll be given a local anesthetic. In most cases, the procedure can be performed on an outpatient basis.

There, now, you are educated, and so am I. We were told that it takes about four months for a fistula to mature, and we have also been told that (a) sometimes the surgery does not succeed and has to be done over, and (b) that Rick has a blood clot in his left arm, formed during his October hospital stay, and no one should come near that arm with a needle.
Even though the illustration on this website shows the fistula near the wrist, the people I've seen at the dialysis center have theirs in their upper arms. Because Rick's kidney failure was sudden and severe, he is now equipped with a tunneled catheter for dialysis, but the medicos are putting on a lot of pressure to get rid of that.
At the same time the fistula surgery is done, he will have a PD catheter inserted into his abdomen. This would enable him to have peritoneal dialysis, which I am not going to try to explain here. I will say that Rick has been making jokes about “having a second dick installed,” and the importance of not mixing up one with the other.
The advantage of peritoneal dialysis would be that he could do it at home, which would be a mercy for us living on the island, financially and physically. We don't know yet if he'll be able to do peritoneal dialysis – he had a hernia operation a few years ago which may affect the possibility of doing it.
OK, this is my first day home in days and I am going to take advantage of it to make a recycling run. Woo hoo.
Thank you all for all your prayers, good wishes, and support both tangible and intangible. I must say that the novelty of the situation has worn off and it is sinking in, I can only speak for myself here, that this is the way it is from now on. Right now we're in a falling-through-the-cracks situation financially, so see those first paragraphs to see how you might help stop up a crack (thank you). Our hope is that once he is on disability and can work part time we'll have something to budget and will be able to carry on more independently than we can now.
And that's about it from here for now.
More of the Oatus Log will be coming in the near future. Hope you are enjoying it.
Blessings, love, hugs.

Part 2: Epoxy, Our Friend

2009-11-08T16:26:00.000-08:00

Nov. 3, Wed.
I got up at 09:00, fired up Charlie Corona (our ever-faithful wood stove) and carried a cup of coffee of into the woods to help me explore.
The clouds are not so low this morning and the heavy winds have tapered off somewhat but still it spits rain frequently. At 11:00 we set a Northern course and got underway.
Outside of Manchester, Oatus suffered an Engineering casualty. A quick check-over revealed a few possible culprits but correcting them didn't correct the problem. The gas gauge being non-operational, we sounded the tank with a piece of doweling and got nothing but dry rust on the end of the stick. That amounts to one tankful since Point Reyes Station, or about 70 miles!
After a trip into Manchester with the emergency gas can, we were off again but not for long. Oatus blew its head gasket and we found ourselves with no choice but to tie up at the side of the road about 7 miles south of Elk.
Oatus is missing two head bolts up by the radiator and we are now experiencing the results of such a situation. Chris liberally coated the area with epoxy and we sat back to wait it out.
Another storm blew in after dark and our firewood began running low so I drove off into the storm towards Elk to see what I could find. Upon returning, the winds got the upper hand and began tearing the tar paper off our unfinished roof. Christ went topside with a hammer and a mouthful of nails while I fought with the leaks below decks while trying to create something for dinner.
What a battle! I can't wait to see what tomorrow brings!

Nov. 4, Thurs.
A fair morning – full of sun! Across the road is fenced pasture with a proper enough allotment of sheep to render the scene idyllic. The pasture slopes downward and away to the West for a thousand yards towards the cliffs that fall to the beach. Out to sea, angry black thunderheads are kept at bay by a strong offshore breeze. Aboard Oatus at 07:30, it's a wonderful vision to wake up to, framed by my bunk porthole.
Well, we spent an exceedingly wild and rainy night in a good deal of comfort. Even in Oatus's primitive stage of construction, things seemed reasonably dry and secured (after a few details were attended to).
Chris gave the blown head gasket another coat of epoxy and drove epoxied wooden plugs into the vacant bolt holes; then we changed the starboard front tire that mysteriously developed emphysema during the night.
Then we sat around biting our mental fingernails while waiting for the epoxy to set up.
At 14:00 Oatus sputtered successfully back to life and were were dubiously underway once again.
Oatus is a good old craft but his engineering is definitely secondhand so we decided to head for Fort Bragg for a few days while we hunt engines.
~ But ~ oh boy ~ Felix the black cat put some changes on us when we stopped at Albion to refuel! Prior to pulling out, he disappeared and no amount of calling or whistling could produce him. Finally, the manager of the little store (whose tiny parking lot was filled to capacity by the combined bulk of Oatus and Family Dog) became urgently insistent that we leave.
A last circling of the area yielded no response and, as we moved out, our moods were perfectly matched with the cold, dark weather that seemed to appear rather suddenly.
Towards dusk we rolled wetly into the outskirts of Fort Bragg and pulled over to allow accumulated tailgaters to pass. Such a crowd had gathered that it was apparent we would have quite a wait. Finally, as we prepared to pull out, an elderly woman said from the side of the road, “Aww, I wanted to look at it.”
Unmistakably friendly vibes! A precious asset! We turned the truck around and pulled into the parking lot. Minutes later we were the guests of Everett and Berta Salmi, alias “Paw” and “Granny Hip.”
Berta runs an antique and bottle shop here and Everett and his long-time partner Unkie operate Ft. Bragg's A-1 Septic Tank Service. In the spring, everyone operates the Red Shanty chicken dinner restaurant; in the summer things must really be far out with all three gigs going at once and Granny Hip reading palms and horoscopes at the same time.
After coffee and apple cake and a tour of the truck Granny and Paw determined that we should park Oatus out back and get a good night's sleep and meanwhile try to run down a working engine. Nothing was located today but a fellow named Brian called and told us of a possibility he would be willing to check up on and invited us to park the truck at a place off in the forests, inland a bit. He gave us directions to find the place and we made plans to drop by tomorrow morning.
The day was perfectly complete when I went out to the truck and found Felix comfortably crashed out on Chris's bunk!

The Log of the Oatus:

2009-11-07T11:54:00.001-08:00

Prologue and Part 1

Our life has become rather dull and repetitive lately; consequently, I'm having a hard time coming up with a column that's about anything but our rather dull and repetitive life. Rick and I thought it might be time to run the log of the H.M.V. Oatus.
Long ago, when we were young and immortal, Rick and his friend Chris Howie were living in Marin County, California. This was about, no, it was exactly, 1970. Chris had grown up in Mill Valley, so he'd been there all his life, and Rick's folks had settled in Larkspur after Rick's dad retired from the Army in the early 60s. Rick and Chris got to know each other through music.
Both Rick and Chris had served in the military – Rick in the Navy, Chris in the Army – and both had been to Vietnam. Rick says now that they got out of the military, and “grubbed out,” growing their hair and trying to erase all traces of the military, and after about a year and a half, decided to leave Marin and head for Canada.
Chris bought a 1946 Dodge flatbed truck for $225. He and Rick then built a camper on the flatbed, out of plywood and salvaged materials, a classic hippie construction of the time.
They built in bunks, and a fold-down table, and a door between the truck cab and the camper that slid open and closed by operating a ship's wheel. Salvaged windows and odd pieces of glass let in the light.
The galley was a tiled shelf at the rear of the camper. A tiny wood stove sat on the shelf to provide heat and a cooking surface. Adjacent to the shelf was a set of stairs that lowered down to the ground by ropes and pulleys. When they had the house on the truck outfitted to their satisfaction, they packed up their gear, Rick's collie, Nigel, and his cat, Felix, and they headed north, intending to emigrate to Canada. Their friends and family saw them off with good wishes and, we realize now, many doubts.
Rick kept journals in his youth, and he kept one on their trip north. Over the years he has done some illustrations that go with the story. That log, and some of those illustrations, are what we wish to share with you here. Part one:
The War of Transition
(I asked Rick why he called it this, and he told me it is the story of their transition from childhood to adulthood and from California to the Northwest, and “there was a war on”)
~ An account of the last voyage of the H.M.V. (Hippie Motor Vehicle) OATUS, from Marin County, California, to King County, Washington, November ~ December, 1970.
Nov. 2, Tues.
Voting day, but Oatus and crew are underway for Seattle, steaming in company with my vintage 1960 Volkswagen, christened “The Family Dog.”*
We got off late but managed to reach Point Reyes Station by 14:00 hours where we refueled and learned of impending tire disaster! We altered our course towards Petaluma for repairs.
We lost one hour and $27.00 before getting underway again. The clouds are low and thick and very wet. Thus we crawled along soaking until we joined up with Highway 1. The Coast Range mountains above Fort Ross gave us a berth for the night, although it was a wet and windy one.
*The Family Dog was a VW Beetle that Rick's parents bought from the factory in Germany. It was called the Family Dog because when they brought it back to California it was issued the California license plate DOG 168.
Next time: Oatus blows a head gasket

What's Happening with Us

2009-10-22T16:15:00.001-07:00

I'm sitting here typing in my netbook while Rick has his first dialysis.
First I must thank everyone for all the love, support, prayers, and good wishes sent our way the last few weeks. We have felt upheld and loved, and we appreciate all of that.
Thank you.
It would be difficult to write about anything other than what we're going through now. It's as if someone has slammed us both between the eyes with a two by four. Wham! Life as you knew it is over, and renal failure is what is important to you now. You cannot argue with this.
You may wonder why Rick's kidneys have failed. If you think you know, tell his doctors, because so far they haven't been able to pin down a cause.
We think it's life. Life can cause of kidney failure.
It's a shock to have everything stop suddenly and realize that your life is in danger, or your spouse's life. Really gets your attention. At the same time, you start hanging around people and places that make you realize that you are not special – there are a lot of people fighting for their lives at any given time, which is a humbling realization. It's a part of life that is usually out of the public eye.
Watching medical shows on TV is not going to tell you anything about what it's like to have a medical crisis. Those people are actors, those situations are scripted, and as Rick's nephrologist says, those shows are phony.
A nephrologist, by the way, is a kidney doctor, and nephrology has nothing to do either with Egypt or having sex with dead people. I know how you people think.
I observed the difference between reality and TV the first night Rick went in to the ER. He was given a blood pressure medicine which may have worked a little too well, and every time he made a rash move like, say, raising his head slightly, his blood pressure would plummet down to, oh, 49 over 29.
If you watch “House” you know that at least once in every show, someone cries out, “He's crashing!” and then three or four doctors are running around the bed like a Chinese fire drill, yelling at each other to do this, do that, and then someone delivers a shot of epinephrine, or shocks the person back to life with paddles, and then the show goes on with the temporarily dead person revived to suffer more camera-friendly, viewer-manipulating drama.
That is not how it happens. The spouse (me in this case) notes the patient is looking punky, goes out in the hall and grabs Jeff, the nurse, and says, “He's not looking good,” and then Jeff calls for help and a contingent of nurses, aides, and one (count him, one) doctor come in and they do move swiftly, quietly, intensely, professionally, and efficiently, to take care of the problem, because, guess what, this has happened before and they have a protocol.
So they pulled Rick's blood pressure out of the basement a couple of times, and by the next morning the drug he'd been given had cleared his system, and they went to a less drastic blood pressure medication.
That was the first and only time I'd ever seen a nurse wrap a blood pressure cuff around an IV bag and pump up the cuff so the fluid would flow faster. I wish I'd taken a picture to send to the “There, I fixed it” website, but I didn't. Still, if you want that IV to drip faster, there's your methodology.
Rick made it through a week in the hospital with the doctors and nurses keeping him alive and watching him for signs that his kidneys would kick back in, but alas, his kidneys are done. The renal function has left the building.
So here we are at the Northwest Kidney Center, with Rick starting dialysis. This is what we'll be doing for three days a week for the foreseeable future.
We are walking a well-worn path. Many before us, many with us, and many after us will be dealing with this particular medical crisis. We are hanging in there together, with the support of friends and family, taking one step at a time, one day and sometimes one minute at a time. One of the paradoxes is that there is nothing like having mortality stare you right in the eye and breathe on you with breath more fetid than that of a 12-year-old black Lab to let you know you are fully, completely alive.
Funny, that.
We're still here, still fully, completely alive, still cracking wise and thanking God. Stay tuned for further developments.
Photo: Rick in the dialysis chair, with his nurse Jean nearby. Rick is tired of pictures that show him in hospital or treatment, but that's his life these days. You can send him a get well card at: Rick Tuel, P O Box 238, Vashon WA 98070.
This is the first time I've published the same post to both blogs. This is an indication of how completely this situation rules our lives right now. I'll try to talk about different things as time, energy, and reality allow.

Waiting for Dialysis

2009-10-18T00:23:00.000-07:00

It's a sodden autumn afternoon in the Northwest, with the sun peeking through after hours of rain squalls. I read some years ago that North westerners have this regional psychology going on – we all feel that we don't deserve to have too much good weather, so when it rains we feel relieved and happy. Hmm. Maybe. For me it goes back to childhood. It isn't rain that makes me happy – it's being inside a nice warm house with the rain outside that makes me happy.
Still, autumn is a glorious season, wet and dark though it sometimes be. The foliage has been lovely this week. This rain storm is making everything less lovely, but that's going to happen sooner or later. It is the second half of October.
We are having a quiet weekend here, hanging around the house and watching Rick. Well, I'm watching Rick. He's watching “20 Million Miles from Earth” on TCM.
On Wednesday we went to the nephrologist (kidney doctor, not to be confused with necrophiliac, although one of my friends mentioned the similarity), and she very sincerely, earnestly, sadly but firmly, informed Rick that it is time to start dialysis. His blood work is coming back with Bad Numbers. This doctor, a nice young woman named Cara Oliver, kept saying how “remarkable” it was that Rick was walking around, looking and feeling pretty OK, considering how bad his numbers are, or as he has said previously, considering that he is “functionally dead.”
Well, so, you can't just run down to the dialysis place and get plugged in. You have to have some sort of catheter in your body for the blood to pass in and out while it's being cleansed of toxins. So bright and early Thursday morning – we caught a 5:20 a.m. ferry – we headed over to Swedish so Rick could have a tunneled catheter implanted. The procedure itself was quick, and the Swedish Radiology Department on Four East has a hallway with really nice couches in it that totally exhausted wives can sleep on while their husbands are getting worked over. I'm not sure if that's what the decorators had in mind, but who ever put those couches there: thank you.
We were on the road home by ten. The incision site became painful for Rick, and still is. He moves carefully, trying not to bump, stretch, or otherwise stress it in any way. He got some hydrocodone (pain killer), but says it does not kill the pain. After two days he's doing a little better. Still complaining, which is a sign of life, but looking less squinched up with pain, and enjoying watching cheesy movies on TV.
We still haven't heard when his first dialysis appointment is. This coming week sometime, we're hoping Monday. I am watching him for signs that I need to haul him back to the emergency room. His numbers really are terrible.
I have a call in to his urologist, who is his primary doctor for the bladder cancer, informing him that Rick is starting dialysis and that perhaps the appointment Rick has for a BCG treatment next Friday should be postponed. When you're in renal failure, cancer has to get in line and wait its turn. I hope to hear back on that on Monday.
I cannot tell you what Rick's spirits are like this afternoon, but here's something he wrote for the blog a couple of days ago:

10-15-09 Thursday
13:00 Returned home with the dialysis catheter in place but it's installed on the right side of my chest in the jugular vein instead of the superior vena cava on the left side as it was in 1997.
And it hurts which is something I don't remember from last time although I was hospitalized then and pretty drugged up.
Although today's procedure didn't include provision for pain medication I called Dr. Oliver's office and left a message inquiring into the possibility. Tori Stevens, one of the medical staff, called back and fixed me up about an hour later and Mary took off for the pharmacy to pick up the goods. I'll probably only need enough for today until the incision site “heals and seals.”
The procedure only took about ½ hour and was done by Dr. Robert Feldman.
Now with time on my hands I'm reading the paper and noting articles with sentence structures that can be interpreted in bizarre ways. Here's one on page A-7 titled, “Record 1 Billion Go Hungry As Aid Dips.” It says that unless the trend is reversed, the international goal of “slashing the number of hungry people in half” by 2015 will not be met.

Mary's back:
So make sure you don't go hungry between now and 2015. It could be dangerous.
One of the really cool things that has happened that we have not talked about as much as we would if we didn't have so much on our collective mind is that Jim Hutcheson got in touch. Hutch, as I've always heard Rick call him, was a member of a trio called The Balladeers back in Germany in 1960-61. They played at USO clubs around Germany. The trio consisted of Rick, Hutch, and Terry McNeil, who later became a follower (practitioner? Convert?) of Hinduism and changed his name to Nandi Devam. We heard from Nandi just before Rick's 60th birthday and he actually showed up at the birthday party down in Sonoma. Nandi and I both looked for Jim Hutcheson on the web back then, with no success, but he signed up for Classmates.com in August and we heard from him there the day Rick went into the hospital, October 5. Rick is so happy to be back in touch with Hutch.
“He was always the coolest thing about our group,” Rick says. “I always thought it must have pained him to hang around with these two lame white guys.”
After their families returned to the States, the boys all went their separate ways. Rick played folk music in Marin County and San Francisco. Hutch put himself through college with his music. Nandi got into rock music and was one of the founders of a San Francisco band called Sopwith Camel in the 60s.
I used to dance to that band at the Fillmore back in 1966.
We are very happy to be in touch with Nandi and Hutch – it's a full circle. I've told them they need to do a reunion concert.

So that's about it for now. Rick has lived through another day. That's good. He is up against some very tough health issues, but I am trying to keep confident that dialysis will make a real difference and get him back on his feet and enable him to finish the cancer treatment. It's hard for him. I try to imagine how he feels, but I can't.
I'm trying to learn to cook a renal diet for him, but I have so much to learn and am lost in a sea of ignorance at present. But I'll hit up my friend the internet for recipes and clues.
Thank you again for all prayers and good thoughts and wishes and expressions of caring. You make all the difference. Blessings to all.

Rick writes about his experience

2009-10-12T13:17:00.001-07:00

More from the Tabletop Diary
Monday, October 12, '09
Hard to imagine that it's only a week ago today that I went off to Bremerton for a C.E.U. Class and ended the day at Swedish Hospital in the E.R., riding the renal roller coaster. Seems like a long time ago now but one doesn't get much rest in the I.C.U., especially at night, so time seems to drag on and on.
They turned me loose Sat. the 10th with reservations since I haven't really shown much improvement by medical standards, the worst of which is my creatinine levels (high range by their gauge is a benchmark of 2.11; after a week of intervention, I'm down from a high read of 13.5 (functionally dead) at admission to a low of 11.0 (still functionally dead) at discharge.
It's to the doctors' credit that they did not follow their natural inclinations to severely intervene due to my lack of response but rather took a step back and noticed that I seemed to be improving even as my stats continued to indicate that I was still functionally dead.
This provides me with some degree of cautious optimism as I return home and continue (so far) to rest comfortably and, more importantly, awaken in the morning not dead.

Rick Is Home Again

2009-10-10T20:54:00.000-07:00

The medical team turned Rick loose from the hospital today, on the condition that he gets blood tests every other day, starting Monday, so that his blood electrolyte levels can be monitored.
His going home instructions say: “You have been diagnosed with acute or chronic renal failure. This means that you had some baseline kidney disease which recently became severely exacerbated. The reason for this recent exacerbation is still unclear. There are some labs pending which will...hopefully shed some light on the diagnosis.”

So he's home, and we're both tired. More later, as we know more.

Friday Morning Report

2009-10-09T12:24:00.000-07:00

Rick is getting better. They don't know why. They don't know why he went into renal failure in the first place – still trying to figure that out. He said one of the docs, Dr. Dave (no last name noted), told him this morning, “Your kidneys have suffered a grave insult. You seem to be pulling yourself around, which is not what we expected.”
For the first time, they did not mention dialysis.
Dr. Oliver (that's her last name), the nephrologist, wants to have a committed relationship with Rick for the near future. She wants to run tests, many many tests, on Rick, to try to get to the bottom of this. The lab results are not back on the tests that were done on Wednesday, and when those are in we might know more, but please forgive us for not getting our hopes up that we'll have a definitive answer.
Dr. Dave says he is “hesitantly optimistic.” Rick's creatinine is down to 11 (normal is 0.5 to 1.7), down from 13.5. Creatinine levels are a measure of kidney function, and 11 is not something to be happy about, unless you are coming down to it from a higher number. Rick's levels have been coming down “reluctantly.” But coming down.
Rick got a shower and a shave this morning, and was feeling great when I spoke to him on the phone, but we were both sleepy.
Rick really appreciates visitors and phone calls – thanks to John, Tom, Susi, Pop-san, Gregg, and anyone I'm forgetting. I do not wish to publish Rick's room and phone numbers here, but if you want to contact me for that information, please do. I'm at home today.
After four days of commuting to the hospital, I am taking the day off to rest. Having difficulty staying awake as I type, so I think the rest is a good idea.
So as of today we are all “hesitantly optimistic,” and tired, and continuing to wait for we are not sure what – answers? A healing? Godot?
Hope you are all well out there.
Blessings.

So, What Did You Used to Do? (edited)

2009-10-07T10:46:00.000-07:00

OK, it's later in the day and I'm adding this picture. You can see Rick is feeling better, as usual not taking the life-threatening illness that seriously. I think just being admitted into the hospital was admitting enough.
Rick says that the docs took a battery of tests and it'll be 72 hours before those results come back. Which puts him here for the rest of the week, at least. The bed rest will do him good -- he has come down with a cold, also. There is some talk of sending him home for a couple of days, if he's well enough, while waiting for test results.
I'm kinda hoping they keep him here and keep an eye on him. I suspect he'll go to work if he is turned loose and feels better.
So that's the news from here. Stay tuned.
***

I wish the news was better. Rick is in Swedish hospital in Seattle, because he went into renal failure. This happened to him in 1997, also, so his kidneys are a weak point. The docs have not figured out what caused it this time. They were looking for a blockage, but have not found one. They are treating him for high potassium levels, which is good, because high potassium levels cause heart attacks, but so far no course of treatment for the kidney problem.
Just spoke with him on the phone; he says, “The gloves are off,” and they're going to start treatment today, probably dialysis. They haven't found a specific cause but are not going to wait any longer to treat the kidney failure. This is good news.
They may do a kidney biopsy today, as well. We don't know what that will involve, but sharp instruments come to mind.
Rick got some sleep last night and is feeling better. Said he had breakfast this morning and kept it down. They have put him on the renal diet, so he got to have french toast and apple juice. He is sounding downright perky compared to the last few days.
When we brought him in to the ER the other night, he had high blood pressure and was given a drug to bring that down. Unfortunately, Rick's blood pressure then did some nosedives, and the room filled with medical people trying to get his blood pressure and heart rate back up to normal. I report that it isn't like the medical shows on TV. Nobody got emotional. They just got very intense and serious and moved quickly to do what was needed to stabilize him. Personally, I liked that much better than TV emotionalism.
At one point, an EMT was babysitting Rick, watching the monitors to see how Rick's blood pressure was stabilizing, and I guess the guy decided to make small talk, so he asked Rick, “So, what did you used to do?”
We both laughed, at the assumption that Rick was retired, and the hard truth of how un-retired he is.
We told the nice well-intentioned young man that Rick was a water worker, and not retired.
“Although this might do it,” I said.
I know that many of you are praying, meditating, and otherwise holding Rick & the family up. Thank you, and bless you. It does make a difference. We feel your support, and we do feel confident that Rick will recover from this. Then he can get back to getting over bladder cancer. One life-threatening illness at a time, right?

Hanging in There

2009-09-28T10:39:00.000-07:00

Rick had another BCG instillation last Friday, and this one hit him hardest of all of them. He slept most of Friday and Saturday, and felt unwell all weekend long. Today (Monday, 9/28) he's at a continuing education class in Bremerton. I am glad he is in a classroom instead of trying to work in the field. He was concerned about staying awake in class. He feels a little better every day after a treatment, so I hope he's feeling much better by now.
He did come to see most of our grand daughter's first soccer game yesterday, but had to leave early.
It is another beautiful sunny day here, although rain was predicted for today and tomorrow. I see clouds blowing by from the southwest,and it's windy in general, which means the rain is probably on the way.

The Latest

2009-09-05T15:48:00.000-07:00

Dear Hearts and Gentle People,
At last, a little good news. Rick went to the urologist last Wednesday, Sept. 2, and was told that things are as good as they could be. The urologist was positive - the original site was clean, and the new tumor which was forming in another part of Rick's bladder was removed and immediately treated with a chemo drug called mytomicin-C (sounds like a super hero to me: "Here I come to save the day!") which is known to prevent recurrences of bladder cancer. So the doc thinks things are going well.
Rick will have three more BCG treatments, starting next Friday, and then in November he'll have another cystoscopy to see how the inside of his bladder looks, and if it looks clean at that time, he won't have to go back to the doc until after the first of the year. He will continue to be monitored, which is good.
What we, and many others, have learned about cancer is that you're never done. You don't get told you are "cured." Sometimes you get to say you're "in remission," but we have not been told that about Rick, just that things are looking okay right now, and this will be an ongoing process.
And that's about as good as it gets.
We are back home in our house in Beulah Park; we're slowly unpacking and putting things away; Rick is working full time, mostly; I played at Cafe Luna here on the island last Saturday and made a whopping $27. As JW McClure says, it's just like the good old days. As I told him, $27 went a lot farther in 1973.
Hope you are all well.

What Rick Did on His Summer Vacation (from the tabletop diary)

2009-07-10T22:02:00.000-07:00

In answer to questions from many of you, Rick is between courses of treatment right now. He starts up again after his next doctor's appointment on the 22nd of July.
He has been feeling pretty good since he hasn't been getting the treatments, and if all looks good on the 22nd, he'll have three more treatments. I don't know what comes after that.
You will learn that Rick's dad, Mark, has a medical situation shaping up. Read on for details. Rick does not mention, but I think it's interesting, that Mark now has a tattoo in his abdomen.
Rick mentions moving, and we will be moving, back to our house, which has not sold in almost two years.
Now, here's Ricky:

July 9, 2009 – Thursday
July 4th kicked off an explosive period, predictably enough. Loop editor Ed Swan is going on vacation and needed two submissions in a row for the paper, so Mary and I were kept busy writing and drawing through the middle of the week to have our contributions for both deadlines ready by the 7th, which we did, miraculously enough.
This was also our first week of having Allysan stay with us for the week while school was out – a nice switch for all but it added to the busy-ness of the period. The whole reason for my taking this week off was to be totally free of work responsibility so we could spend time with John and Julie Blakemore, and daughter Sarah, arriving from Australia and Ireland, respectively, also on the 7th. Or maybe it was Monday, the 6th.
At any rate, John & Julie came over for the day Tuesday morning and Sarah arrived later in the afternoon. A joyous reunion after too long of an absence!
Wednesday, J. & J. were occupied most of the day at the Social Security office over town at 9th and Lenora, working out the details of John's social security allotment from Uncle Sam – a complexity since he's an American citizen as well as an official Aussie. While they were occupied with that, Sarah came over and spent part of the day with us, catching up on everything that's occupied her life as an adult. The last time I saw her she was about 3 feet tall so there was a lot of ground to cover.
Likewise, in the midst of all this, the Quartermaster Heights “water system” blew a leak in its sub-standard piping. With no water meters on the system and the pipes consisting of untraceable sub-standard styrene, we had no clue as to where to start looking. Some of the older residents recalled that the last time this happened it was due to the sub-standard piping in our (i.e., Reva's) house.
A quick check revealed that the repairs made under the house then were (guess what) sub-standard, and dripping but plainly not the leak we were looking for this time.
Harley and I spent two days walking around the neighborhood consulting the sub-standard pipe map until Harley found it in a ditch, coming out from under a large tree. Apparently it had been leaking minimally since the day the pipes had been put in and the leak had fed the tree which wrapped its roots around the abundant water source until the combined weight of the tree and the roots' stranglehold crushed the pipe. Before the leak could be repaired the tree had to be cut down and the massive root ball cut away.
This has been quite a vacation.
We got to spend a nice day with John and Julie over here. We packed up this afternoon (Thursday) with Allysan in attendance and hiked the beach at Lisabeula, which I forgot how to spell. We got home shortly before Gregg Rechtin arrived and we polished off no less than three complete pizzas with grapes and strawberries on the side.
That almost completes the major events of the week to date, except for:
Dad Tuel called this evening with the results of his latest colonoscopy. He has a miniscule tumor, almost microscopic but nonetheless malignant, in his transverse colon. So far, his doctor believes it can be removed by laparoscopic surgery, and he's going back in tomorrow to set a date for its exorcism. He'll try to call back tomorrow night with further information.
Geez! What a year this has been so far, at least medically. Very challenging.

July 10th, 2009, Friday
Dad's surgery is set for July 31st, the earliest date they could arrange. His doctor said if he'd come in for the colonoscopy a few days earlier, they probably could have removed it (the tumor) this week.
Hmm. July 31st is looking like an impacted period of time. I'm going on call the day after I return to work next Monday. We start the move back to Beulah Park on Saturday, August 1.
My next date with Swedish is the 22nd, the day after I come off call and my next day starting on call will be August 4th, shortly after the move starts and Dad goes in for surgery.
While Mary took JD to work (4 p.m. to midnight) Allysan wanted to go take a dunk in the pool and while she was splashing around, John, Julie, and Sarah dropped by for a last visit before continuing their journey on to see Bruce and Hugh – their last stop on their world wide excursion. Oh, it's hard to say good-bye. We wanted to go with them!

The Day After the Last Treatment

2009-06-13T12:45:00.001-07:00

The last treatment of the first series of treatments, that is. Rick is lying down right now, because yesterday's instillation hit him hard and he's recovering from the effects. He looks tired and a little gray still this morning. So he went and got back into our nice warm bed, with a good book (Patrick McManus' novel, Avalanche, the second of his Sheriff Bo Tully mystery novels. This and the first novel, The Blight Way, are available at your local library. For Vashon Islanders: this is Patrick McManus the writer who lives in Spokane, not Patrick McManus the guy who lives on Vashon and has a little career as an Albert Einstein impersonator). The book is entertaining, but I think Rick will be asleep soon, if not already.
(pause)
Yup, he's out like a light.
He is glad that this first series of six treatments is over. Now he is free of the medical community until July 22, we hope, when he will return for a biopsy to see how things are going, and then another three weeks of treatments, if everything looks OK at that time.
We were told that each treatment would make more of an impact on him, and while that has not been entirely the case, I can sure see it this time. Rick has really been knocked flat. Of course, he was on call last week, so worked half days last weekend. On call weeks took it out of him before he started the cancer treatments, so I can see why he's in complete collapse today.
My part of this is trying to figure out how to pay the regular bills as well as the medical bills. What savings we had were pretty well tapped out over the last year – sound familiar, anyone? - so it's a challenge. But, hey, I really enjoy a challenge. Although I've decided I need to keep the nitro pills at hand when I'm paying bills. Stress causes chest pains, and I'm not good at dealing with challenges when I'm having angina.
All I'm looking for here is a little sympathy. I figure plenty of people have it harder than we do, but the crap we're dealing with is sufficient that I wish to acknowledge it. So don't feel bad if I don't answer an email or otherwise respond immediately to whatever. Life is a little overwhelming right now, and sometimes I need to step away from reality and watch the waves at the beach for a few hours.
I'm hoping to attach a photo or two to this blog – a picture of Rick in the waiting room, and a head shot of Theresa, the nurse who does Rick's instillations, among other things. Even though she hates Vashon Islanders, she and Rick have formed a cordial working relationship, and she seems like a nice kid.
Also, a shot of the orange fish in the aquarium at the clinic office. This fish spends most of its time trying to find a way out. We admire its spunk, and pity its frustration.
Thank you for continued prayers and good wishes – we feel blessed in friends and family, and so grateful.

More from the Tabletop Diary

2009-06-07T13:17:00.001-07:00

This morning's tabletop diary entry:
June 7th, 2009 Sun
Yesterday I received a manila envelope-sized notification from the Washington State Department of Certification Services, serving me with a notice of polite businesslike intent to revoke my water worker's certificate if I do not complete my obligation to them to acquire 3.0 continuing education units (CTUs) by December of this year. My certificate #4199 will be invalidated and cast into the outer darkness by February of next year and my position as an unpaid government minion will be terminated and purged from the holy memory banks of the Washington State Department of Health data base. Amen. Forever and ever.
This governmental entity/appendage, an artifact from the draconian Nixon administration, was Federally Mandated in the early 70s as a reaction to the irritating re-occurrence of the Ohio River's tendency to catch fire and burn for days at a time. More importantly, Mr. Nixon was being caught up in an increasingly irritating incident known as Watergate and needed a diversion for the public more effective than simply announcing that he was not a crook. He therefore created the Safe Drinking Water Act and dumped the responsibility for its implementation into the lap of one John Ehrlichman, a son of the Northwest whom he did not trust, to keep him (Ehrlichman) out of his (Nixon's) hair.
Ehrlichmann took these federal riches back to his home state of Washington as a potentially huge feather in his political cap. He ended up going down as a Watergate conspirator anyway, a victim of political necessity, and 37 years later I'm soon to be out of compliance with the Feds if I don't get on the stick. Politics eventually victimizes everyone. A recent cartoon of mine bemoans this sad fact of life.
(P.S. I fed the dog.)

More from the Tabletop Diary

2009-06-07T13:17:00.000-07:00

Offshore and Today's Entry in the Tabletop Diary

2009-06-06T12:46:00.000-07:00

Rick wrote this morning:
June 6, 2009 Sat.
D-Day Europe, 1944. The beginning of the end for Fortress Europe.
After three weeks of heat, culminating in this week's temps into the low 90s, a transitional period blew into town on Thursday evening with hot high velocity wind events, "micro bursts."
This morning it's all collapsed like a soap bubble and clouds and rain have arrived with temps in the mid-fifties.
Yesterday, Friday, June 5, was the fifth and next to last BCG "instillation" and I'm also on call for the poor beleaguered Water District #19.
The heat has driven the treatment plant mercilessly, running both filters nearly 24 hours a day to keep up. Additionally, we shut the wells off for a month on May 10th as we do every year in order to monitor the aquifer levels. Usually this is okay because usually we don't have any serious dry weather until maybe a week or so in July and/or August, but this year we got ambushed.
This year is not a La Nina or an El Nino year it appears. I've heard it referred to as a once-in-a-blue-moon occasion which has to be called an "El Nada" year; that is to be presumed as a whole year when nothing is predictable, weather-wise.

Week Five

2009-06-05T12:12:00.001-07:00

Second to last treatment of this series this morning. We have it down now: leave the house by 6:30 to catch the 7 a.m. ferry, because if we catch the 7:15 a.m. ferry every car in Seattle is on the road. My theory is that most people in Seattle leave for work at 7:30. That's the way I explain the guaranteed gridlock at 7:45.
We drive in on Spokane Street, get on I-5, stay to the right, take the Madison exit, and head up the hill to the parking garage for the Arnold Pavilion and the Nordstrom Tower, then head up to the urologist's office. I think I've given the details for what happens there in previous postings.
Up until now we have taken the 10:20 ferry home. Couldn't make that 9:25, so we'd stop and get coffee and breakfast (MacDonald's – we're not talking fine dining), or just coffee to drink in the ferry line on the dock. Today, though, we got in and out, and except for a delay on Fauntleroy where they are digging deep rectangular holes in the pavement and then filling them back in with concrete, had a pretty straight shot to the 9:25.
So now we're home, and I'm writing and Rick's cartooning. We're doing this as fast as we can before we both topple over from lack of sleep.
One more treatment, next Friday, and then 6 weeks off.
You know, when you hear the word “cancer” it throws you right off your feed and off your game. I've been pondering the power of that word ever since Rick went through this the first time, in 1998. What we've learned is that many cancers are very treatable these days, but you don't think of that until you've been through that initial feeling that the world has fallen away beneath your feet.
It's such a nasty shock – I mean, it's easy to say, “We're all mortal,” in an intellectual detached way, but when it hits you that you, personally, are mortal, RIGHT NOW – that's a whole 'nuther thang, and there isn't much detachment at hand.
But then you are in the toils of the medical system, and your life depends on and revolves around appointments and treatments and ferry schedules, all the rather mundane details of doing what you have to do to get well again. You do it all, you miss work and go places you never wanted to go and do things you never wanted to do, so you can go back to being detached about mortality.
I don't think the detachment is ever quite the same as it was before cancer, though.

O BCG

2009-05-30T12:46:00.001-07:00

It has been a big week. Rick and I celebrated birthdays, our friend Sonya came to visit, and Rick had his fourth BCG treatment.
What he is told about the BCG treatments seems to change from week to week. At first he was told, “It's like a vaccination.” It is immunotherapy, meaning that the BCG revs up his immune system, as a vaccine would. His immune system then attacks the BCG, as well as any cancer cells that are hanging around. This idea pleased Rick: “They're making my body into a cancer killing machine!”
Yesterday someone explained to him that yeah, the BCG does activate his immune system, but unlike a vaccination, the treatments do not produce a permanent effect. When the treatments stop, the effect stops.
So gradually we learn what's going on.
He has two more treatments, two more Fridays, to go in this course of treatments. Then he'll have six weeks off, at which time he'll have a biopsy to see how the inside of his bladder is doing. After that he'll have three more treatments, and then, perhaps(?) six weeks after that he'll have another biopsy. If everything looks peachy then, he'll go six months before coming back in, and if he's looking OK then he'll go to annual check ups to monitor his condition.
At least that is the myth I'm telling myself today. I think this is what we can expect, but things change and we learn something different.
Today he said he felt lousy when he got up, and he went back to sleep for an hour or two. As he was frying an egg for Allysan, he told me, “I think I'm having a BCG day.” So he's not feeling so great today. Knowing that he's not supposed to be feeling great might be some small consolation, but doesn't make him feel any better. Only “tincture of time” and the prayers and good wishes of those who care for him will do that. Thank you for those prayers and good wishes.
The birthday celebrations were lovely.
Sonya came up on Monday, and on Tuesday we observed my birthday. On Wednesday, the eve of Rick's birthday, friend Gregg came over for dinner and we put some little candles that Sonya got on the pizza. They were letters on toothpicks that said “Happy Birthday,” and we put them around the rim of the pizza, lit 'em up, and sang the birthday song to Rick, then ate the pizza. I got out my guitar and sang “When I'm 64” and “In My Life,” among other songs. Then I brought on the birthday brownies. A good time was had by all!
Thanks for all the birthday calls and emails – these things mean a lot to Rick. He has really been enjoying hearing from you.
So that's week 4 here in bladder cancer treatment land.

Bacteria and Birthday

2009-05-24T14:05:00.000-07:00

It's Sunday and Rick has made it through three treatments. As he says, there is not much to tell now. We have fallen into the routine of going in on Friday mornings, him getting the treatment, and then heading for home so he can recover for the rest of the day. Saturday is better than Friday. Sunday is better than Saturday.
The treatment team told him that he had a bacterial infection, but that was expected and normal. I'm not sure what the plan is for that – if they treat him with an antibiotic, it would attack the bacteria they're putting into him to fight the cancer. So, it's not chemo, it's not radiation, but it's not a walk in the park, either.
Rick's birthday is this week. He'll be turning 64, so I've printed up the lyric to that fine Beatles' song, “When I'm 64,” so I can sing it to him for his birthday. If you're old enough to remember when the Sgt. Pepper album came out in 1967, perhaps you remember how old and far away 64 seemed then. Now it's the other way around: 1967is long ago and far away, even if it sometimes feels like yesterday in my memory.
It's nice to know that we are still around to “need and feed” each other, all these years later.

The Second Treatment, in Pictures

2009-05-15T12:44:00.000-07:00

Today was Rick's second BCG (Bacillum Calmette-Guerin) treatment, which is called an "instillation," at Dr. Lilly's office in Seattle.
For those of you who tuned in late, this is an immunotherapy treatment for bladder cancer. It was originally used as a vaccination to prevent tuberculosis, but was found to be useful in treating and preventing certain bladder cancers, or so the informational site I looked up says. No one really knows how or why it works.
He has four more treatments to go after this, every Friday until June 12, after which he'll have a break for a few weeks, then be checked again for signs of cancer in his bladder, and then there will be another go-round.
Today I took some pictures of the trip over, and here are my notes, and Rick's:
We leave the house early and catch the 7:15 a.m. Ferry, head into Seattle, go up Madison to the parking garage for Swedish-the Arnold Pavilion-Nordstrom Tower. Right after Rick gets out of the car in the parking garage, you can see he's feeling pretty upbeat, in a tense, dreading the treatment way.
Because we park on the third floor of the garage we can walk through the double doors, up three stairs, and from there to the sky bridge which extends from the garage to the Nordstrom Tower, with another sky bridge branching off in the middle that goes to Swedish Hospital. The sky bridge looks like it goes on forever, and it does. If you look at the ceiling you will note a certain unevenness. It dips down as you head west. I found myself thinking that I hope not to be there in an earthquake.
We turn right at the offramp – excuse me, hallway – that leads to the third floor elevators of the Arnold Pavilion Building, and then we go up, up, and away to Doc Lilly's office. Not that we'll see Doc Lilly today.
The reading material on the table in the waiting room is grim. I don't know if you can read the titles, but they are, left to right: Caring; Coping with Cancer; another copy of Caring; and Towing, all stacked on top of many copies of Highlights, the saccharin magazine for kids that I thought was drippy back in the 50s when I read it at Harry Ashcraft's dental office in Watsonville. It persists.
I'm not sure how the Towing magazine got in there. I mean, I'm not sure how cancer and towing are related, but I'll give it some thought now.
Because we came on the latest ferry that would get us there on time, we arrive 20 minutes early. The staff is talking and laughing, that early morning greeting and checking in that employees do in most workplaces first thing in the morning. Rick makes his usual contribution in the restroom – make no mistake, the urologist always wants your pee – and then joins me in the waiting room. We watch the fish tank, noting a little orange guy who seems to be looking for a way out.
After a while, Rick is called in for the treatment and I am left to wait. I decide to fill my idle moments by fluffing up his vest and my coat, placing them on the arm of the love seat I'm sitting on, and lying down.
Here's Rick's story of what happened while I was napping:
"Mary and I caught th 0715 boat to town for "instillation" #2 and were back on the island by 11. No need to see Doc Lilly for these procedures. The nurse who does the job is a young lady named Therese who lives in Southworth so she is a ferry rider, too. She has plenty of opinions about Vashon residents and none of them are good. they get in her way when she's trying to catch a boat, they cut her off in the ferry line, make her miss boats, and are rude and opinionated. I could only sympathize since I have the same feelings for the newbies who have moved out here and cause the same trouble when we're just trying to get around. They have a distinct sense of entitlement which we old-timers are particularly critical of because we, of course, have never behaved in such offensive ways ourselves. (--and if you believe that, I have a couple of bridges in New York I'd like to sell you)
"Now I'm sitting around and waiting to start feeling like crap, which shouldn't take long. Therese assured me, with no small sense of satisfaction, that the treatments become more uncomfortable each time. Maybe if we ever catch the same boat home with her we'll try to cut in front of her accidentally."
(back to Mary)
If it was me, I've have some doubts about a person with this attitude sticking a plastic hose up my wee-wee to fill my bladder with a caustic bacterial liquid, but as you see, Rick rose to the occasion with his usual grace and flair, and he also said that the instillation itself was not painful today.
After that we went back to the car and made the reverse trip from Seattle to the Fauntleroy ferry, making a short stop at the California Avenue McDonald's for coffee when we realized we were going to miss the 9:25 a.m. ferry. We sat on the dock and drank our coffee, caught the 10:20, and headed for home.
I took a picture of the ferry docking at Vashon, then turned and took a picture of Rick sitting next to me in the car. You can tell he doesn't feel as good after the treatment as he did before, which is exactly what he was told to expect. He has also been told to hold the bacteria in for two hours, no more, and when he lets it out, he is supposed to put two cups of bleach into the toilet and let it sit for 20 minutes to kill off the bacteria before flushing it, so it won't have an opportunity to enter any public septic tanks or sewer systems.
It takes us about two hours to get home from the appointment, so that works out well. He'll take the rest of today to recover from the effects of the bacterial stew, and probably tomorrow and Sunday as well. As I type he is feeling feverish, a burning in the bladder, and, as predicted, crappy.
Four more instillations to go, but it's all part of the process, which will go on for quite a while. This is what we're learning about this cancer: it can be treated, but the treatment process will get tedious and go on for a long time. Talking to other people with cancer, and spouses of people with cancer, I'm learning that this is the norm. You're psychologically done before you're physically done. Someone remind me of this in a few months. Thanks.

Sweet Georgia Brown: guitar trio & tractor

2009-05-14T12:08:00.000-07:00

Our friend Elizabeth Tullis sent us this link:

http://fschnell.net/WordPress/?p=1094

I had seen it before, but Rick hadn't, and he is delighted by it, so we wanted to share it with the world. Enjoy!

Rick on BCG

2009-05-07T18:09:00.000-07:00

So we went in to see the urologist, Dr. Lilly, for Rick's surgery follow up and to hear about the pathology report. Here's Rick:
From the Tabletop Diary:
“May 7, '09, Thursday
Doc Lilly confirmed that it is/was definitely bladder cancer. Good news is it's treatable without chemotherapy or radiation. The treatment is intravesical by immunotherapy which means a live bacillus (bacteria) called Calmette-Guerin (BCG) is placed inside the bladder with a catheter and left there for two hours. The bacteria seek out and destroy the cancer cells while the body seeks out and destroys the bacteria triggering the immune system to attack cancer cells. Pretty slick, however, like any immunization, it causes a low-grade infection in the body and you feel like crap for a day or so.
A nurse loaded me up and within 2 hours I started feeling like crap. After I peed it into the toilet, I was instructed to add 2 cups of household bleach to the water and flush after letting it cook for 20 minutes. I get to do this for the next six hours and drink lots of water in between.
I'll go in every week for the next five weeks for a repeat of the treatment; then I get 6 weeks off followed by a biopsy to look for cancer cells. If they find some, they repeat the treatments; if not, I get some time off before the next checkup.
Yes, this is long term treatment – from two to five years or, at my age, perhaps for the remainder of my life.
Also, treatment with BCG is not without risk. There have been instances of bleeding, clotting, high fevers and even hospitalization. In rare cases, death.”

And here's Mary:
Whew. Have you noticed how many medical treatments end their descriptions end with, "Oh yeah, and you might die?" But if you don't get the treatment, the disease will have its way with you, so you go ahead and have the treatment.
Rick will be going back in to be filled up with BCG every Friday morning for the next five weeks. "So," he said to me as we walked out of the elevator at the Arnold Pavilion,* "no vacation this year." He'll be using his vacation days for BCG treatment and recovery. Hey, we never go on vacation anyway.
The good news in all this is that the cancer had not invaded too deeply into the bladder wall. Doc Lilly said the stage was T1. Those of you conversant with cancer stages know that cancer is rated in stages 0 through 4, 0 being the least advanced and 4 being the most advanced. Afer Stage 4 you have "recurrent."
The not so good news is that it is a "high grade," or aggressive, type of cancer, but it is treatable, and Rick has started treatment.
*The Arnold Pavilion is one of the many large buildings that are part of the main campus of Swedish Hospital up on First Hill, above downtown Seattle, also known as "Pill Hill" because of its high population of hospitals and medical offices and facilities. Swedish is a sprawling collection of buildings, and if you get sick in Seattle you're likely to spend time there, unless you belong to Group Health, Seattle's legendary HMO.
The other nearby hospitals on First Hill are Harborview, the county hospital; and Virginia Mason Hospital, which is now affiliated with Group Health. All of these hospitals take up a few blocks of space. Going a little farther east from Swedish you come to what is now called the Swedish Cherry Hill Campus, formerly Providence, a Catholic hospital. Cardiac care is done at Cherry Hill, and that's where I had my angiograms.
Another Catholic hospital, founded by Mother Cabrini, was absorbed into the main campus on First Hill some years ago. Hospitals are like oil companies and newspapers: they consolidate into larger, and fewer, entities.
The main Group Health campus is north and east on Capitol Hill.
I arrived here in 1972, so these are the hospitals I know about. I know there were more, but they were before my time. There are other hospitals in Seattle: Highline, down in Burien; the Ballard campus of Swedish Hospital in, naturally, Ballard, and formerly the Ballard Hospital; and Valley Medical down in Kent. Those are the big ones I know about in or near the Seattle city limits. I'm sure that is an incomplete list.
They are all rabbit warrens, mazes of halls and floors and elevators and sky bridges.
Much of the Arnold Pavilion is devoted to cancer treatment, starting with the Swedish Cancer Institute on the ground floor. The Arnold Pavilion is also where you go for mammograms, ultrasounds, and other tests and treatments, not necessarily having to do with cancer. It is connected by skybridges with the main Swedish hospital building to the south, where Rick had his TUR last week, and to the Nordstrom Tower to the west, another complex of medical offices.
So that's it for today.
Tomorrow I go in to the Sleep Medicine Associates and talk about how great my CPAP machine is and how nice it is not to be dying in my sleep anymore.
Every day in every way I understand more deeply that joke that "old age ain't for sissies."

Today's photos are of the purple rhododendron blooming in front of the house, and Rick back at work on his cartoon strip, while recovering from BCG treatment.

Cartoonist at Work

2009-05-06T17:54:00.000-07:00

It's Wednesday, and tomorrow morning we go back in to see Dr. Lilly, the urologist who did Rick's surgery last week. At that time we hope to have revealed what the pathologist found, and what is next.
Rick is worried, and I can't blame him. It's his body that's being processed here, and he doesn't know what's happening. It wears on him.
I am trying to maintain a calm, feet-on-the-ground attitude, but am aware that my true nature is to be going off like one of those fireworks pinwheels, screeching and blowing sparks and not getting anywhere. Still, I try to maintain that calm attitude, at least externally.
Rick went to work for a few hours yesterday and today. Work can be a little bit of normal at a time when a lot seems out of whack. His employers and colleagues are being supportive to him, which is great.
He really appreciates hearing from those of you who get in touch.If I've said that already, I'm saying it again. It means the world to him to know people are thinking of him.
To me, too.
He says that when he speaks on the phone to people he knew in high school, "Their voices sound just the same, and suddenly it's like I'm 17 again." He feels like the friendships are there same as ever, and that feels great.
And now when he can't sleep at night, he can use the time to think up insults to toss at Phil de Fremery. These two have been calling each other "Hose Nose" and "Hedge Face" and other pleasantries for decades now, and there's something life-affirming in those insults, to them, anyway. I just shake my head. Is this any way to talk to a friend? Apparently it is.
Right now Rick is working on this week's Offshore cartoon for next week's issue of The Loop. I include a picture of the strip-in-progress, so you can see how it goes. He draws the whole thing in "photo blue," a pencil which is not supposed to show when copied for publication, although I note that it shows in this picture. He inks the dialogue first, and then later he'll ink in the drawings. He does it slowly and carefully. That's just the way Rick works.
More tomorrow, after the doctor's appointment.

A Few Words from the Man Himself

2009-05-04T09:36:00.000-07:00

Here are more entries from the table top diary:

April 30, '09 Thursday (0)
05:30 Fed the dog and let him out.
Today's headline: “Swine flu found here!” (in King & Kitsap counties; also one case in Spokane). Geez! It only took four days to get here from Mexico. I fail to see the significance of a virus, which has been with us for so long a time, suddenly advanced to front page, world-wide epidemic status. Must be a slow news day or another media attempt to sow panic and thereby reap newspaper sales. The only thing about it that's out of the ordinary is timing. Flu season is “supposed” to occur in the fall and winter; presumably then, it has merely failed to stick to its approved schedule. Hmm. Not a very dramatic headline.
In reality I'm only griping about it because Mary and I are off to spend the next 24 hours at Swedish Hospital to get my bladder reamed out. Today is the end of the countdown and therefore a great relief to me as I was wondering if I would make it without incurring a premature medical emergency.
JD and Drew are in charge of the house and the Pup pup in our absence which hopefully will get us home by tomorrow afternoon.

May 1st, '09 Friday
Yesterday was a long day. Mary and I made our 1:00 p.m. deadline at Swedish for pre-operative prepping, making sure the paperwork was in order, meeting with the anesthesiologist and Dr. Lilly plus the various nurses for I.V. insertion, etc.
They wheeled me into the O.R. and the next thing I remember was waking up 2-1/2 hours later in a post-op recovery room with no more bladder monster!
I was treated to a delightful, light-headed gurney ride to room 218 where I met up with Mary and got to have some cranberry juice and the first food of the day – fish and chips!
Mary and I had a restless night, her with an uncomfortable cot to sleep on and me with a crampy bladder that wouldn't let me sleep.
At 07:30 Doc Lilly came in, fairly pleased with how the surgery had gone, and loaded my bladder with as much saline as it could hold and then watched the Foley bag fill to the volume he had deposited before pulling the catheter and de-Foley-ating me. I was now in the hands of Leah Cheung, the floor nurse who began a merciless program of administering fluids and measuring the amount I peed out. Finally, Leah pronounced me functional, even though it took me most of the morning and enough water to float a boat.
By the time we got home, I was peeing almost non-stop. That's how the rest of the day was spent. By then, the phone calls from well-wishers were coming in non-stop as well so I began taking the phone with me into the bathroom.

May 2, '09, Sat.
This morning the newspaper asks itself: Is this really a world-wide killer swine flu pandemic or just a lot of premature paranoid raving?
Well, since they asked, I vote for a third choice: unnecessary, irresponsible fear-mongering with a big dose of profit motive.

May 3rd, '09, Sunday
Story in the paper today. The U.W.'s Dept of Communications gave up its telephone land lines. Apparently hardly anyone uses them anymore so they're being eliminated as an unnecessary expense.
With everyone using email, gmail, texting and twittering, the use of vocal communication may become obsolete someday. I'm all for it. For years I've wished that people would just shut up. The thought that vocal cords may someday shrivel up and disappear is a little disturbing, though.

Back Home Again

2009-05-02T12:49:00.001-07:00

We are back home at Casa Tuel, and Rick is recovering well from his surgery. I asked him if he had anything to say this morning, but he disappeared into thin air, as he so often does.
Actually I find myself talking to no one a lot. I think it's my hearing. I don't hear people walking away, so I say something, and getting no answer look around and realize I'm alone. Happens all the time.
Rick says he's feeling good, though moving a little slow, and he does not hesitate to lie down and nap as the need arises.
Of course, being Rick, he was planning to go back to work on Monday. I'm hoping he will reconsider that and take a few more days off. Rick's first concern, even when he is literally dying, is “when can I get back to work?”
Ah, here's Rick. He says he is awfully grateful for everyone's good wishes. He has really enjoyed the phone calls and emails. I think he tends to forget how many people care about him – well, I guess most of us tend to do that, not realize how connected we are to other people and how important that is. At times like this, we remember.
I am grateful, also. You all have really come through for Rick and it has been pretty wonderful. Thank you.

Today Rick will rest, I hope, and my friend Becky and I will go see the quilt show. The Island Quilters have a show every two years. This year it is being held at Camp Burton. I love to see the intricate and beautiful patterns they make. I'll take pictures, and maybe write about it and post pics on the smart aleck blog.

Hooray! Hooray! The First of May!

2009-05-01T08:31:00.000-07:00

Hooray! Hooray! The First of May! Outdoor intercourse starts today!
Okay, now that I've got that off my chest -
It is indeed the first of May. Rick and I were awake at four-something, when Leilani the nurse brought him two more Vicodin, and now he is off to dreamland. He is experiencing pain, but the Vicodin lets him sleep.
Pain is relative. The pain after a trans urethral resection is genuine, and he did say he didn't sleep much during the night, but we are comparing this to the pain he felt after his last two surgeries, the prostatectomy in 1998, and the hernia repair in 2005. Both of those were incision surgeries, or, as the anesthetist said, the sort of surgery where “you feel like you've lost a knife fight.” The trans urethral resection (hereinafter referred to as “TUR”) is a whole 'nother kind of surgery.
I have thought several times through this process that there are similarities to when I was having babies. It is backwards: I am the one standing here in relatively good pain-free condition while my spouse goes through the pain and the doctors and nurses are snooping around his normally private parts. Also, while both of us had something that had to come out of our abdomens, at the end of the process I had a baby, whereas Rick now does not have a tumor.
What is pretty much the same is that those normally private parts become public property. Forget modesty. Forget discretion. Ain't no such a thing at times like this.
Having said that, I hope you are ready to read what a TUR is, at least as I imagine it. Guys, you might want to cross your legs.
A tube is inserted up the penis, all the way up the urethra to the bladder. This tube has an exterior diameter of 1/4” to 3/8” tops, which makes the rest of what goes on more amazing to me. Up the tube goes a camera, and a wire loop that is electrified – that is the carving tool.
How do they get these things in there, and up there? Beats me, but it is clear that they do.
Once all this equipment has gone up the tube into the bladder, the camera can look around, the carving device can slice up the tumor and also take biopsies of other areas of the bladder, and then the detritus is flushed out.
Rick was saying this morning that he wondered what the tumor looked like. “Probably looked like dandruff by the time Doc Lilly had it carved up and got it out of there,” he said.
After the work has been done inside the bladder, the equipment is removed and the catheter in the urethra becomes a channel for flushing out the bladder, removing blood from the incisions, and urine as it is produced.
OK, Rick is awake and has ordered breakfast, and I am crashing now. Mo' later.

Later: Doc Lilly, the urologist, came by and checked Rick out. He was very pleased with how the surgery went and how Rick is coming along. He said the tumor was “very broad based,” meaning, I think, that it took up a lot of space on the bladder wall, so it was difficult to get the tumor out without going through the bladder wall. He is still feeling good that he managed to do that successfully. I told Rick that when Doc Lilly spoke to me on the phone right after the surgery, he sounded like he felt he'd really nailed it. Kind of like how we used to feel when we came offstage after a really good set.
He took the catheter out, and told Rick to eat breakfast and go home! Yay! He wants Rick back next Thursday for a follow up appointment.
Of course this going home is all dependent on Rick's ability to pee independently.
The doctor said that all the tumor that was flushed out was sent to the pathologist, and we will discuss the results of pathology testing and make our plans accordingly next Thursday. The question is, how pathological was it? Doc Lilly said he was pretty sure it was cancer, based on how the tumor looked and cells found in Rick's urine, but this will be the first time the actual tumor cells are examined.
It is important at these times to have a sense of tumor.
(pause)
Rick is having breakfast now. He was up and walking around for a while, and then had a faint/nausea spell, but I guess that's normal considering that he's been through general anesthesia, surgery, and a few narcotic pills. No fast moves would be advisable.
OK, that's the early morning report. More later, I'm sure.
***
Swine flu
Being in the hospital when everyone is completely freaked out about swine flu is an interesting experience. Rick had a faint spell – he didn't pass out, but he did become clammy and nauseated and felt faint for a few minutes. Leah, the nurse, quizzed him: do you feel like you're coming down with a cold? Any flu-like symptoms?
No, just the fallout from surgery.
Yesterday the intake nurse told us that they had seen one case of swine flu at this hospital, and there were three cases known in Seattle. “Tomorrow there'll be a hundred,” she said.
Schools are closing all over; the World Health Organization has declared a level 5 alert and told countries to put their pandemic prevention and control protocols to work.
This hospital has antibacterial gel dispensers posted everywhere: by elevators, at the door to every room. There are also face masks available. I've been washing and gelling my hands so frequently that the skin feels almost crispy, or at least uncomfortably dried out.
It is interesting to me to see people so diverted by this combination of hysteria and practical considerations. Of course Rick and I have other things diverting us, other claims on our attention, so the swine flu seems not too important to us. Kind of like my computer dying and my credit cards being stolen. Normally these things would have me upset. At this time these things are annoying, but not central. Rick and his health are central. Perhaps swine flu will seem more important as time goes by.
Or perhaps, as a joke that came in the email the other day said, I'm not more patient and calm, I just don't give a shit.

A Hell of an Imposition.

2009-04-30T13:58:00.000-07:00

"This is a hell of an imposition," Rick said as he got out of bed this morning. "Cancer is a hell of an imposition."
I could not agree more.
We are in the pre-op area of Swedish, waiting, waiting, waiting. Rick's blood has been taken, and his EKG has been faxed over from our clinic on the Island. Now we wait.
When I took my netbook out, the nurse who was doing the intake on Rick asked, "Is that a computer?" Well, yeah, it is, sorta. A teeny, tiny limited use computer. The only computer I have at the moment.
It keeps flicking from this blog page to the desktop for some reason. "Dammit," I say.
"That's the kind of computer talk I'm familiar with," Rick says.
He is all decked out in hospital garb - jammy bottoms, open back gown, and then a robe to to it off. All in all quite decent, the height of hospital haute couture.
Nearby a small child is crying and screaming. Children have not learned how to "be brave" and be quiet and stoic while their bodies are being intruded upon.
It reminds Rick of getting shots before going overseas when his dad was in the military. Children were running down the hall screaming; the medical techs would slap you and tell you to shut up.
Gosh, sometimes I don't get nostalgic at all for the 1950s. He says it was much nicer when they went off base to a family doctor. Not the hysterical mob scene.
Ten after two. Surgery is scheduled for three. we wait. I'll add more later.

Later that same evening: The Dead Tumor Sketch
Greetings from room 218 SW, at Swedish Hospital in Seattle. I'll spare you the drama: the surgery went very well. Dr. Lilly, the urologist, said he got all of the tumor, and managed to do it without perforating the wall of the bladder, which would have been bad. He also took some biopsies of other parts of the bladder to see if anything else is hiding out there. He's coming by in the morning to see Rick, and if all is well Rick may go home tomorrow. No word at this time on malignancy or not. Stay tuned.
All we know is that the tumor is gone, dead, perished, gone to join the heavenly choir eternal. It is an un-tumor. It is no more. It is bleeding deceased
Rick is joyfully eating fish and chips, a salad, a Pepsi, and coffee. Joyfully because it's the first food he's had for 24 hours. I am having trail mix I purchased on the way in to the hospital.
It has been a long day. We're going to kick back and watch "Bones" on the hospital TV now. All is as well with Rick as it could be, he's having dinner and he's on pain meds. Life is good.

The Tabletop Diary

2009-04-29T09:19:00.000-07:00

The tabletop diary's last two entries are terse:
“April 28, '09, Tuesday (2)
Fed the dog.”
“April 29, '09, Wednesday (1)
Fed the dog.”

These are Rick's notations of what is absolutely necessary: the date, the information that I don't need to feed the dog because he already did, and the number of days until he goes to the hospital.
The diary is an artist's sketchbook that we keep on the kitchen table in order to communicate with one another and note items of interest, such as whether the dog has been fed or how many days until surgery. We've filled up several sketchbooks over the years, and I put them away in a filing cabinet. There they sit, records of our everyday ephemera, and sometimes the not so ephemeral, like surgery.
When I am out of town, Rick writes much longer entries, detailing the weather, his work, and his thoughts.
I was going to quote something he wrote, but then I thought I should ask him how he feels about something he wrote going onto a blog. As I may have said already, I'm hoping to get him to contribute to this blog, because my writing about him only tells my version of his story, and you and I would prefer to hear from him.
Last night we had a call from Michael Shapiro, who had bladder cancer in 2001. His call gave Rick some information and the benefit of Mike's experience, and was encouraging to both of us. Thanks, Mike. He is a talented photographer, by the way. You can view his work at: http://www.michaelashapiro.com/
He is Michael A. Shapiro, by the way.
So, today Rick's at work, natch. It's a bright overcast spring day. I'm thinking of taking some things to the dump and to Granny's. Visiting my cousin Nancy's house, which is staged to sell, was inspiring. Everywhere you look, clean, clear surfaces. Of course if you're living in a house, not selling it, you don't have to go to those extremes, but I'm on a downsizing-decluttering toot, not that you could notice if you walked in here for the first time.
So that's today's report. So far.
PS: several of you have responded and I've been reading your emails to Rick. Thank you! He is so happy to hear from you.
We're enjoying other theories of what the bladder tumor is. My favorite so far is John McClure's suggestion that maybe it's part of Jimmy Hoffa.
Rick is off work for the day and is eating as much as possible because he won't be able to eat anything before the surgery tomorrow.
Thanks for everything!

The First Entry

2009-04-28T18:16:00.000-07:00

It's Tuesday, the 28th of April, 2009.
On Thursday my husband Rick will go in to Swedish Hospital - well, I'll drive him in - and there Dr. Lilly the urologist will perform a trans urethral resection to remove a tumor in Rick's bladder.
We're all pretty sure it's cancer; perhaps it is not. No one has actually seen it yet in person. We've only seen a thumb-sized lump attached to the interior of his bladder on an ultrasound. Perhaps it is a thumb, the single vestige of Rick's undeveloped twin.
Sorry. I've been watching too many episodes of "House."
Whatever it is, its days are numbered. On Thursday it will be removed and inspected, and after that perhaps we'll learn where we stand. There may be, the doc says, "a bigger problem." There may be chemo and radiation.
If Rick loses his hair it will be the first time I've ever seen him without a mustache, of which he says: "I always wanted to grow one, so I did. And then I didn't want to shave it off, so I didn't."
We are hoping that it doesn't come to chemo - we're hoping that surgery does the trick.
Anyway, I thought I'd start this small blog and only tell a few people who might be interested in Rick's progress.
His spirits are as good as they might be under the circumstances, and mostly he feels ok physically. Mostly.
It's pretty presumptuous for me to write about Rick's experience; I sure won't be experiencing it the way he does, and I hope to get his input for this blog.
Stay tuned.