O BCG

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

Bacteria and Birthday

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

The Second Treatment, in Pictures

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

Sweet Georgia Brown: guitar trio & tractor

Our friend Elizabeth Tullis sent us this link:

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

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

Rick on BCG

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

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

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

Cartoonist at Work

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

A Few Words from the Man Himself

Here are more entries from the table top diary:

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

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

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

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

Back Home Again

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

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

Hooray! Hooray! The First of May!

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

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