Part II, Chapter 5: The End Is Near
Well, I have finished my radiation treatments, and I'm all aglow. I have what looks like an accident with rouge on my right cheek (I'm talking about my face. Don't go there.), and it's a little puffy. Radiation turned out to be pretty exhausting as it accumulated, so some days I sleep a lot. Unfortunately, I restart chemotherapy on the Monday after Thanksgiving, and I have 15 more weeks to go.*
Meanwhile, that nasty insurance problem is all patched up. Of course, if it knows what's good for the bottom line, the insurance company has a hit man looking for me right now. Its liability for murder has to be less than my medical bills.
So, Happy Thanksgiving to all. This Thanksgiving, I will be particularly thankful for my many friends whose generosity and encouragement have helped me deal with this adventure.
*For the non-doctor types: At this point, if there is any cancer left, it is microscopic, so there is no way to know for sure that it is gone. Therefore, according to protocol which is used for patients throughout the country with my type of tumor, I receive a set amount of chemotherapy to maximize the chances that there are no cancer cells left. After that, I will be monitored closely for a very long time to catch it early if it comes back.
Sent: December 2, 2005
Subj: Just when I thought it was safe to blow my nose. . .
Hello, friends and family.
It's never a dull moment here in Tumorland. I have just escaped the hospital. I had a new, and particularly, uh, interesting infection. As you may remember, last summer, my surgeons reamed out my right maxillary sinus (That's under my eye and next to my nose.), removed the bottom part of my right orbit and then rebuilt it using various spare parts I keep lying around in my body. Then, from September until about 2 weeks ago, the area was irradiated daily.
(The following is not for the weak of stomach.)
I had been quite tired over the last couple of weeks and had some swelling under my right eye. I attributed this to radiation aftereffects. Foolish me. When I flew to Maryland and back for Thanksgiving, I grew a fair-sized, red and tender pouch under my right eye and felt a lot worse. A CT scan showed an infection under my eye, air pockets on either side of my eye within my orbit, and a fistula (that's not a Roman emperor, it's a term for a tunnel that has developed anywhere in the body where one does not belong) running from my sinus into my orbit. In other words, I had blown my nose into my eye socket. Not good. After a brief hospital stay and heavy duty antibiotics, I came home. As I write this, I am getting IV antibiotics home-style--just like Mom used to make.
All of this leads to some scary questions. Can this happen again when my white count is low? (There's some important stuff in my orbit and easy access to my brain.) Can I now breathe through my eye? And after all that radiation to my eye, do I have X-ray vision?* Stay tuned.
*I wouldn't tell you if I did.
Sent: December 28, 2005
Subj: A Very Tumoriffic Christmas
Sent: December 31, 2005
Subj: The year of living dangerously
Happy New Year!
I am finally out of the hospital. It took all week for my immune system to bounce back from chemo, which it did this morning with a satisfying 'boing.' All of my doctors will phone conference next week to come up with a plan that does not include having me stuck in the hospital for six days with an orbital infection and no white cells or worse. Everything is on the table including stopping chemo altogether. I have cautioned them that it's all fun and games until someone loses an eye.
Was 2005 my worst year ever? Well, for most of the years of my life, there was no K or LLC, so it's complicated. It was certainly among the hardest ever. I hope 2006 is better than 2005. (I hoped 2005 would be better than 2004, year of two little tumors, and look where it got me.)
'til next year,
Sent: January 10, 2006
Subject: A learning
Sent: January 20, 2006
And more learning
Sent: February 10, 2006
Hello, friends, family, and National Security Agency.
Long time no write. My muse has been off consorting with someone else.
First of all, as said by actor John Young* in "Monty Python and the Holy Grail," "I'm not dead yet." After another full serving of chemotherapy (Yum!), I have bounced back.
I am still on the horns of the same dilemma as last time. (That is a very uncomfortable metaphor. Exactly where would those horns be?) Should I take the next and final dose of doxorubicin? It might kill off any cancer cells staying way past their welcome. On the other hand, it smacks the immune system, and causes heart failure in the unlucky. Bummer.
My oncologist seems to have solved the former problem by lowering the dose. My nadir (when your immune cells pull a Jonestown) was brief, mild, and for once, infection free.** However, in affairs of the heart this next dose is pivotal, because the grand total doxorubicin dose would reach a threshold where the chance of heart failure goes up alot. Now, even my doctors are divided on whether to skip it or take the plunge.
How to decide? Toss a coin? Roll dice? Examine sheep entrails? Or maybe I should actually read some medical journal articles, since I am a doctor, after all.
So where do I get a sheep?
* That detail is extremely geeky. I know.
** During the nadir, the neutrophils are away, so the bacteria play. Though apparently not infected, the usual playground under my right eye is red and pouchy, likely due to radiation recall, i.e when a drug causes a previously irradiated area to become inflamed. It's kind of like one of those dumb relationships you just want to forget, but you can't, because she's still got a set of keys to your apartment.
Sent: February 26, 2005
Musings from the Heart
Sent: March 6, 2006
Subj: I can't seem to spit or get off the pot.
First of all, to take it down a notch, though the chances of of getting one or the other or both (YOW!) may total in the double digits, the most likely scenario is that I will have neither congestive heart failure*(known as CHF to friends) nor metastatic cancer. Nevertheless, this is tough.
It's coming down to the line, and I still haven't settled on whether or not to take the last dose of chemo. There seem to be journal articles on both sides. Most maddeningly, none of them apply precisely to me, making it a game of educated guessing at best. (I was quite disappointed to find no studies of doxorubicin side effects and efficacy involving Tom. I suppose it would be tough to find controls, much less statistical significance. Limited applicability, too.) CHF would be disastrous. Osteosarcoma treatment failure would be a nightmare too.
The vote among my readers overwhelmingly favors calling it off right now to minimize risk to my heart. The vote for chemo is zilch, and the third party (doing much better than Ralph Nader) is to go with my gut.
My gut says, "Don' you mess wid my friend, the heart, or I'll mess wid you. You know what I can do to you." That's no idle threat. On the other hand, the gut is often full of hot air.
Here's what the lungs say: "What are you thinking?!! If the cancer comes back, we'll be the first to go!" (Head and neck osteosarcoma metastases are more likely to appear in the lungs than anywhere else.)
Heart responds: "But if I go into failure, you'd also be the first to suffer."
Lungs: "Oh. Yeah. Forgot. That's a tough one," taking a deep breath, "Whatever, man. Whatever."
This afternoon, the decision may be made for me. I am having an echo stress test to find out if there has already been subtle damage to my heart. If there has, no one will even consider giving me more doxo. Not something to be wished for, though.
Sent: March 7, 2006
Subj: done. Done. Done! DONE!
Today, I saw Xena, my oncologist, and told her I didn't want my final dose of doxorubicin. Although she would feel safe giving me another dose, she said that the science is so unclear that the best decision is the one which will cause me the fewest sleepless nights second-guessing myself. I can change my mind any time, but if I waffle any more, the Democrats might nominate me for president.
It will take me a few weeks to recover from last week's chemo, but I have had my last dose.* Of course, never say 'never.' I have clearly annoyed some truly vindictive deity, and sometimes burnt offerings and ululating just aren't enough. My doctors will watch me very closely for years to come.
Also in the news, my stress echocardiogram was thoroughly normal. However, the experience itself was a humbling demonstration of how out-of-shape I am, and I was dizzy for a good half-hour afterwards whenever I stood.** I am still happy with my decision. Doxorubicin can cause heart failure, sudden cardiac death, and poor taste in shoes months, years, or decades later without warning. I have enough to worry about.
If my decision eventually appears to be wrong, it will still have been MY decision. Let no one who has advised me ever feel bad about it.
Peace, love, and please, please, please no more *#$+!!! tumors,
P.S. If you haven't had enough, look for the upcoming Tumoriffic cartoon series, action figures, and mime!
* I may send the occasional update at key points, and if the worst should happen, there will be a whole new series.
** --a failure of my body's blood vessels to tighten when I stood, allowing blood to run out of my brain, making me dizzy. This is a temporary effect of the chemo. (For the insiders: dampening of suppression of the vagus (baby!).)
*To clarify for nonmedical types: Congestive Heart Failure is the inability of the heart of to pump enough blood to meet the body's demands. It often manifests as shortness of breath as the lungs are flooded by a backup from the heart. It is often fatal or debilitating, can be treated but not cured. May worsen or even occasionally self-resolve when caused by doxorubicin. Makes me short of breath to think about it.
Sent: July 10, 2006
Subject: Tumoriffic Epilogue(?)- If you love your hair, let it go. . .
I have had writers' block for the past few months. It's easier to write when life stinks (just look at most of Russian literature).
I finished my last chemo in March, and I have been recovering well. The weight loss from the chemo left me at my ideal body weight, and so I have been exercising like a demon to maintain it. People always say the hardest part is keeping it off. Not so much for me. LLC is my fitness coach and accompanies me on my workouts.
My hair has returned, and it's wavy. I like it, but what a way to get a permanent! Sadly, I expect it will straighten. That's how it worked 23 years ago at the end of my first go-round.
K, LLC, and I are going to move in September to a beautiful house in a great neighborhood. We look forward to having many of you as guests.
I finished my internal medicine residency a week-and-a-half ago. I could grow up and stop now, but instead, I've chosen perpetual training. I am in the Tufts-New England Medical Center infectious diseases fellowship program. Under supervision, I give advice to internal medicine teams that are dealing with patients who have complicated infections. It's hard work, but not as hard as being a resident, and it beats having a tumor hands down.
There are some minor annoyances leftover from my adventures in tumorland. My right eye still doesn't quite align with the left, and there is a lump of swollen tissue underneath it. It looks like I was in a barfight. That may be permanent. But you should see what I did to the other guy.
The faint of stomach may want to stop here.
I am also unable to properly clear my nose. So, several times a day, I have to fill an enema bag (never used for the original purpose) with water and bicarbonate, hang it up, and spray the mixture up my nose. At first, I referred to this as a 'nenema.' But I thought that was tasteless. It also had enormous potential for confusion and embarrassment when I would say "I'm going to go do a nenema now." Say that outloud, and you'll know what I mean. So now I call it a 'nouche.' Think about it.
Thank you all for your support during this awful year. Let's hope there is no Tumoriffic Part III.
Unfortunately, there is a Part III.
All comments, suggestions, compliments, insults, and hate-mail should be directed to Tom@tumoriffic.org.