Yawn! It's just after 5:30 a.m. on Sunday, and my parents have just driven off in their fine American car. "No, we don't want any breakfast. Got to get on the road and get home. We'll get a bite to eat at the Roy Rogers on the turnpike." I had even gotten up early and made coffee, hoping to tempt them into letting me fix them some breakfast. But no. They were making a quick and quiet getaway.
Well, the first round of Juliet's treatment is over. She checked into the Dana Farber Cancer Institute two weeks ago to receive the experimental drug, interleuken-6. (For those of you with a science background, IL-6 is one of the gene-spliced wonders being farmed inside of the much appreciated and overworked E. coli bacterium.) As part of this clinical trial, Juliet was getting a small dose of IL-6 every morning for 10 days. The first 3 days were spent in the hospital, watching for side-effects, undocumented reactions, etc. The side-effects amounted to the equivalent of the flu: not nice, but easily remedied with a nap and some codeine. After getting discharged, Jules had to go back to DFCl every day for the rest of the 10 days to get the shot and then to be watched for 4 to 6 hours. Extremely boring.
As far as anyone can tell, the IL-6 has been doing its job, which is mostly to build up Juliet's bone marrow prior to the chemotherapy. (IL-6 also appeared to fight cancer tumors by itself when tested in mice.) Chemotherapy is a crude form of treatment. Basically, it's throwing a lot of poison up against anything that moves. In this case, "anything that moves" is any cell in the human body that is rapidly dividing. That not only includes the cancer—the actual intended target—but also the lining of the mouth and stomach, hair, and (most importantly) the bone marrow, which is normally busy churning out the platelets, red blood cells, and white blood cells your body needs. Ideally, the more poison the bone marrow can withstand before starting to fail, the more poison available to kill off the cancer cells, wherever they may be.
So, the real chemotherapy starts this Thursday night, July 9, and lasts for 3 full days. Juliet will be in the hospital through the morning of Monday, July 13. It's hard to know what we should expect. Juliet's cancer is a type of sarcoma and sarcomas are notoriously resistant to chemotherapy. That, unfortunately, means that the drugs in Juliet's "protocol" are just about the strongest chemo there is to get. Naturally, we're both nervous. The doctors and nurses say that they have wonderful new anti-nausea medicines ("What? No pot?") and that many people just "sleep through most of it." Ooo, there's something to look forward to... After that, hopefully the major thing to worry about will be the overwhelming fatigue.
My parents were up from Kentucky for the last couple of days. I love my Dad, but it was still a strained visit. My folks are dealing with all of this by not talking about it. That's fine for them, but it means I don't even really have my very small (and strange) family to lean on. They still call rarely and when they do call, they can't bring themselves to ask about what's really going on. I guess it's hard for them to know what to do. I just don't understand why they can't get past this midwestern, Depression-era awe of long-distance phone service.
Favorite story from the visit: My mother actually at one point turned to Juliet and said, "Juliet, I really like your hair. I always wished I had hair like that." While I'm picking my jaw off the porch floor, Juliet replies, "Well, I won't have it in a couple of weeks. Maybe I could send it to you."
Thank you for all of those cards and letters (and recipes and poems and trinkets) that you've sent in the last week and a half. They've really helped brighten my days and made me feel better. I think I'll have to bake something chocolate before next Thursday! Juliet appreciates all of your well wishes to her, as well as your kind support of me. We're getting by.
OK, here's a request: Do any of you either remember any elephant jokes or happen to still have a book of elephant jokes from the '60s? Juliet is a big fan of elephant jokes and I thought that finding a few that she doesn't already know might help make her days a little cheerier- especially those long days in the hospital. Let me know. I’ll pass along particularly good ones to the rest of you next time.
The sun is going down over the city. I know this, even though my view from this room is not of the sun, but of another hospital building. The light reflected from those windows into this room makes the white walls a little more blue than I expect of early sundown. Sounds are making more of an impression as it is starting to get too dark to write. The door is closed, but outside in the hall I hear the nurses loudly discussing the location of the errant narcotics key while a bored visitor is banging out a poor rendition of a Scott Joplin rag on the patients' lounge piano. The sound of the infusion machine on the other side of Juliet's bed reminds me of the creaking chains of a sat-in porch swing. The roommate is snoring. Juliet is doing some controlled breathing, trying to keep the nausea in check until her next medication, though nothing seems to really help. So she counts the hours. We count the hours. 24 hours and one liter of chemo to go until it stops. (There. Another reason to hate the metric system.) 36 hours until freedom. There's no guarantee the nausea will stop.
So, best intentions aside, Juliet is into her second cycle of chemotherapy and I haven't told you about the first. I suspect that should give you some clue about how things went. Juliet was admitted to Dana Farber Cancer Institute on the afternoon of Thursday, July 9. The first of three 24-hour periods of chemotherapy started that night around 9 o'clock. The chemo "protocol" that Juliet is on is called MAID, which is an acronym for the four drugs being given. (Juliet could tell you what each letter stands for; I'm still not sure. I do know that the M is for mesna, which is given to protect the bladder from the horrible effects of the I drug, which I think is ifosfomide. The A drug is adriamycin.) Between the MAID drugs and the anti-nausea medications, Juliet was pretty much out of it by the next morning. She doesn't remember much of that weekend, including accidentally pulling out a line on the way to the bathroom in the middle of the night. It's just as well. To me, much of it is a blur, too.
Juliet got out of DFCI on the following Monday afternoon, still incredibly nauseous and fatigued. By this time, she had run through most of the anti-nausea drugs available. This was definitely not the time for the doctors to be saying, "Yours is an unusual case. We've never seen anyone so resistant to anti-nausea medications as you." Terrific. Monday through Thursday at home were incredibly horrible. She had a reaction to one drug that made all of her muscles tighten. By the time the nausea got better, it was Thursday and she had been an entire week without eating or drinking.
Naturally, neither of us was looking forward
to going back for the second cycle of chemo. And there isn't much opportunity
to recover from one cycle before going back in for the next. The way this
is working, Juliet is being admitted every three weeks. Supposedly this gives
the cells in the body just enough time to recover before slamming them
some more. Juliet's bone marrow took enough of a beating in the first cycle
that she had to wait three extra days for her blood cell counts to go up
high enough to be admitted. This time, between cycles, Juliet is getting
the experimental drug, IL-6, which should help her bone marrow keep up
its production of red cells, white cells, and platelets. (Unfortunately,
IL-6 also has this nasty "flu-like" side effect.) If it's not one thing...
Monday, August 10
Well, so much for Cycle 2. The doctors have now definitely run out of drugs to try for the nausea. (Picture, if you will, physicians frantically leafing through their copy of the Physicians Desk Reference.) It was a long weekend at home. I won't bother describing it.
The only potentially good thing we've heard so far is that Juliet's chest x-ray before this cycle looks better than the one she had before the last cycle. That means that the chemo is at least having some effect on the cancer. That might make it a little easier to go back for Cycle 3 on August 24.
Juliet's mother has been here almost non-stop since the first trip to the hospital in June. This has allowed me to go work almost every day. (When Juliet is in the hospital, I'm at work from 7:30 a.m. to about 3 p.m., and then at the hospital until after 9 or 10 o'clock. By the time I drive the 45 minutes home and have some dinner, it's after midnight.) So, it's been nice to have that kind of extra person around to take up the slack in keeping Juliet company both in the hospital and at home. On the other hand, imagine having a live-in parent again at this stage of your life. "Just when you think you've got them under control-you don't! They're PARENTS WHO KNOW TOO MUCH OF YOUR BUSINESS!" Juliet's lucky; she mostly doesn't have the energy to get very annoyed by it all.
Elephant joke update: Yes, we did indeed receive two books of elephant jokes! Thanks! Both were published in the 60s at the height of elephant joke popularity. I don't know about you, but I didn't remember all those Charles de Gaulle elephant jokes. Perhaps I now know why.
Life's a little busy for me, but I seem to be handling it surprisingly well. No doubt a simple headcold will send me over the edge at some point. In the meantime, your letters and positive thoughts are more helpful than you know. Hope things are going well for you and yours.
October 25, 1992
Days, weeks pass — and I'm just now getting around to catching you up on things here in our little corner of the health care crisis. Yes, it's been over two months since my last mailing. You're probably asking yourself, "Is this any way to run a newsletter?" What must you have been thinking? Those of you who called were obviously worried and thinking that things were going badly. (It was interesting that everyone called at about the same time, as if there was a certain number of weeks beyond which you couldn't stand the suspense.) In normal times, it's possible for me to get too busy to get a letter put together and out. But these aren't normal times and I'm too busy to get lots of things done that seem to get done anyway. Of course, it's also possible that I just didn't have anything definite to tell you. Sigh.
Briefly, Juliet was in the hospital for 10 days when her white cells crashed after Cycle 2. That was particularly horrible, being unexpected and twice as long as the chemo stays. (The doctors took pity on us at one point and let me take Juliet out "on loan—and with a mask—to a restaurant to celebrate her birthday.) The duration of that little stay meant that she was out of the hospital for only a few days before going in for Cycle 3. Thanks to a switch in blood growth factors, her white cell count stayed up after both Cycles 3 and 4, which went fairly well. (My birthday fell during Cycle 3. Our anniversary fell between hospital stays, but no one had the strength to notice.)
"What's happening now?" Well, my friends, that's exactly what's been keeping me from writing. I don't know exactly what is happening and when. (Mostly, when.) Juliet and I are at the mercy of the hospital's schedule. However, while I don't know the exact timing of events, I do finally have a general idea of what's going to happen.
The big picture is that Juliet will be having high-dose chemotherapy with an autologous bone marrow transplant. Whew! If you recall, when last I was here lecturing about bone marrow, chemotherapy, and blood cells, chemotherapy kills rapidly dividing cells, which means cancer cells, hair, and bone marrow cells among others. Now, it's not as if Jules was getting low-dose chemotherapy. Actually, she was getting the strongest chemo a person can get short of destroying the bone marrow (and thereby killing the patient). The doctors try to push the doses of chemo as high as they can, figuring that the more chemo the body can be made to withstand, the more poison available to kill the cancer. How do you give stronger chemo when the bone marrow can't take it? Either you need to protect the bone marrow (not possible) or you do a bone marrow transplant to replace the marrow the chemo destroys.
Autologous bone marrow transplant isn't quite as bad as it sounds. Autologous means that Juliet will be both donor and recipient of the bone marrow. They harvest her bone marrow, freeze it, and then give it back to her after the extra-high dose chemo has destroyed all of her remaining bone marrow (and hopefully whatever cancer cells are still at large in her body). Since the bone marrow they'll give her is actually her own bone marrow, there isn't the risk of rejection normally involved in the transplants you read about in the news (where they've had to find a donor).
Naturally, there's much more involved. There'll be a small operation performed the same day that they do the bone marrow harvest. (The harvest is done under general anesthesia. Juliet has had her marrow tested, which involves coring into the hip bone with a 2-mm diameter needle. Incredibly painful. To get enough marrow for a transplant, they have to go in something like 50 times.) There's an experimental growth factor program where they will be siphoning off "baby blood cells" (stem cells) before the chemo to give her back later. And then there's some talk about abdominal surgery to go in and remove the other ovary. None of this has been scheduled. It's coming, but I'm not sure when. I'm guessing things start this week.
The bottom line is that Juliet will be in the hospital for 4 to 6 weeks. During that time, she will be in semi-isolation due to her not having any white cells left to fight off infections. Visitors will have to wear masks, gloves, gowns, etc. Given her troubles with the other chemo, there's no reason to think those are going to be pleasant weeks.
The good news is that this isn't being viewed as a shot in the dark. The chemo Juliet has had so far has actually worked; the cancer is no longer visible in CT scans or x-rays. The doctors are thrilled and incredulous. The x-rays got applause from a group of doctors who gathered around the viewer, Doctors Juliet doesn't know come up to her and say, "Great x-ray! Wonderful news!" None of them ever expected the chemo to make much of a dent in this sarcoma. Luckily, it did. Now the idea is to chase down any cancer that is left- to either wipe it out entirely or at least beat it back so that it doesn't come back for years. Yes, it sounds like a good idea. However, there is a scary drawback...
There is a 5% mortality rate for this procedure. Granted, chances are much higher than 5% that the cancer will quickly return if she doesn't do this, so it's not as if we have much of a choice. There's a lot of frustration in not having choices. The first operation was a year ago last week. I'm not sure we've had a lot of choices in all the time since then.
On the up side, Juliet has been out of chemo long enough this time that she has actually been feeling not bad for the last couple of weeks. She's eating everything in sight. She's doing her best to annoy the hell out of me (in her own unique way), presumably to make up for lost time. We even hosted a small party last weekend to mark our being in the house for one year (but mainly just for kicks). Until the tests started up again last Monday, it was almost like having a normal life.
As for me, work is absorbing — in a psychotic, project-from-hell sort of way. Management is still in a mental meltdown. All the money in this year's budget was spent by May, leaving us stuck with way too much work to do and no money to hire freelance help. All manuscript for this book has to be released by December 15, which puts me in the biggest crunch in the month of November. Notice any similarities between crises in one life arena and another? As I've told Juliet, as soon as she looks even remotely healthy, I'm having a nice, two-week real or imagined flu break. Leave liquids at the door.
As I've said before, thanks for all the letters, cards, phone calls, videos, charms, books, jokes, chocolate, quotes, poems, recipes, well-wishes, clippings, prayers, etc. Juliet talks to her mother and her sister long-distance every day. It's taken me months to get my parents to check in with me once a week, and they still don't have a clue what's going on here. You are my support network. And I thank you for being there. You can't know how wonderful what you've been doing truly is to me, to us. I hope I've learned how to be more supportive. It's been interesting to see who has been there. I've dropped people from the mailing list this time, people who never even acknowledged what Juliet is going through with so much as a postcard. Some of my oldest friends have barely done more than that, or have written that they're speechless and then proven it by not trying to say more. Interesting how things (and people) turn out.
With that, I think I'll get to bed. My watch says it's 5 o'clock in the morning EST — and I got up on EDT. I hope this finds you happy and well, drinking hot cider, enjoying autumn, and thinking of spring. Take care.
Finally. Another year. I can't even begin to tell you how much I've been looking forward to the end of 1992. Good riddance! Aside from Clinton winning the presidency, I can't think of one decent thing that happened last year. (And for some of you on this mailing list — Linda, you in particular — even that wasn't a highlight. Hey, I personally had to bail out of three different careers under Reagan/Bush! And higher taxes to feed the hungry versus higher taxes to pay for the S&L debacle? I'll take my chances... But then I digress and wax political. Unfortunately, company is coming next weekend and I'll have to wax the floor, too.) Anyway, so long, 1992. And here's to a better year for us all, each and every one.
Yes, the final assault on the cancer is over. The bone marrow was harvested. The stem cells were gathered. The wisdom teeth were extracted in a horrible and difficult operation. And finally, Juliet went into the hospital on November 20. She was released on December 16. Based on what the doctors said would be a stay of between 4 and 6 weeks, she got out two days ahead of the best schedule. So, yes, she was in the hospital for Thanksgiving, but made it home for the rest of the holidays. (Actually, that's why there's company next weekend: now that Juliet can eat again, we're doing a belated Thanksgiving!)
Four weeks locked away in a tiny room was ugly enough, but add onto that not eating anything more than Italian ices in all that time, being hooked up to as many as 10 bags of chemicals and fluids, having lines coming out of her chest and another bunch of lines implanted in her neck, the nausea, and so on and so on... (I'll spare you the gruesome details.) It wasn't a picnic for Juliet.
On the other hand, as you can tell by her getting released so soon, everything that was supposed to happen did happen like clockwork, Juliet got her bone marrow back seven days after going in and only a couple of days after finishing the chemo. Slowly, the marrow cells found their way back to the bones and started churning out blood cells. In fact, Juliet's counts were so good this past week that they took the lines out of her chest. They figured she had so many platelets that it wouldn't be a problem.
Hopefully, many of you got to see Juliet on CBS This Morning on November 16. We didn't find out when the story was going to be on until late on November 15, so I wasn't able to call everyone. (And some of you found out that the morning news shows apparently juggle their two hour segments, showing different hours to different time zones at different times. Sorry.) They shot at least an hour of tape when they interviewed Juliet at the hospital about this autologous bone marrow transplant therapy. Unfortunately, they didn't use much of the interview. They did, however, choose to show more than enough of us in our kitchen and in our dining room. The doctors at the hospital said they were getting lots of calls for information after the story ran. Luckily, we did not receive many calls about all those pill bottles on our kitchen counter.
What happens next? Well, Juliet is still pretty much confined to quarters. Luckily, this house is much bigger than that hospital room. Since she still has very little immune system, she isn't supposed to go out where there will be large crowds. We went out to hunch today in the middle of the afternoon, so she can get out if we plan ahead. In February, she should be able to get out on her own again. And, with luck, we hope she can get back to work in March. It is, however, going to be a long recovery. Between the higher-than-high chemo and bone marrow transplant, she isn't bouncing back as quickly from this as she did from all the chemo cycles last summer. It'll be a while before she has enough energy to do much of anything. For now, she's simply housebound and bored.
The cancer. No one has said much of anything about that. The assumption is that Juliet will start going back for CT scans every three months, watching to see if it comes back. In short, we go back to the "watch and wait" mode we were in last winter and spring. There are no statistics; only a handful of people with this form of cancer have done this treatment. I guess we'll try to catch our breath and then go back to planning for some sort of long-term future. How are we going to get a baby, and so on?
In the midst of the many hours at the hospital, the many hours commuting, and the many nights spent listening to the "Visiting Relative of the Week" rummaging through the refrigerator at all hours of the night, I was able to make my deadlines on my project at work. One more deadline January 14 and that should be the worst of it. I could stand to slow down. And to have a real vacation.
This, my friends, is the final newsletter. Yay! Once again, thank you for being there and for being supportive. It meant a lot to both of us. It certainly meant a lot to me, having not established those "We're in touch every day" sorts of relationships some people seem to have. Let's never do one of these again, Normal correspondence will start again as soon as I can.