Monday, October 4, 2010

Rick's First Day Back at Work


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.

Wednesday, August 4, 2010

A Good Time Was Had by All


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.


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.

Tuesday, July 13, 2010

A Little Good News for a Change


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.

Friday, July 9, 2010

Rick's Log: June 1 to 4, 2010


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.

Tuesday, July 6, 2010

Rick's log, May 25 to May 30

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.

Monday, July 5, 2010

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


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