Thursday, December 31, 2009

What Would You Name This Decade?

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.

Tuesday, December 22, 2009

Niki Calls; Rick Dreams

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!

Thursday, December 17, 2009

Rick is Thinking Deep Thoughts

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

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.”

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.
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!

Wednesday, December 16, 2009

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

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
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.

Wednesday, December 9, 2009

Two Illustrations by Rick, One Rude

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:
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.

Thursday, December 3, 2009

Waitingish; and GOOD NEWS

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.

Friday, November 27, 2009

The Holiday, the Clammy Damps, and Japlish

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.`

Wednesday, November 25, 2009

A Little Good News for a Change

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.

Sunday, November 22, 2009

Important Correction!

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.

Friday, November 20, 2009

Rick Writes Again

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.

Wednesday, November 18, 2009

Log of the Oatus: Ft. Bragg

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.

Friday, November 13, 2009

An Update, and a Commercial

(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 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.

Sunday, November 8, 2009

Part 2: Epoxy, Our Friend

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!

Saturday, November 7, 2009

The Log of the Oatus:

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

Thursday, October 22, 2009

What's Happening with Us

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.

Sunday, October 18, 2009

Waiting for Dialysis

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 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.

Monday, October 12, 2009

Rick writes about his experience

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.

Saturday, October 10, 2009

Rick Is Home Again

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, October 9, 2009

Friday Morning Report

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.

Wednesday, October 7, 2009

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

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?

Monday, September 28, 2009

Hanging in There

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.

Saturday, September 5, 2009

The Latest

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.

Friday, July 10, 2009

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

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!

Saturday, June 13, 2009

The Day After the Last Treatment

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.
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.

Sunday, June 7, 2009

More from the Tabletop Diary

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

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.)

Saturday, June 6, 2009

Offshore and Today's Entry in the Tabletop Diary

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.

Friday, June 5, 2009

Week Five

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.

Saturday, May 30, 2009


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.

Sunday, May 24, 2009

Bacteria and Birthday

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.