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Part II, Chapter 5: The End Is Near

 

 

Sent: 11/23/05

Subj:

 

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.

 

--T

 

*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

 

Season's greetings, everyone.

Interesting trivia point: Since my July surgery, I have had several titanium screws beneath my scalp holding my skull together.  I can check to see if one is loose!

I have had a truly tumoriffic Christmas.  As you may remember, last month I had an infection of my surgically reconstructured and therefore very vulnerable right orbit.  On antibiotics ever since, I had been doing pretty well.  I had a full round of chemotherapy (two-and-a-half weeks) that ended last Tuesday.  Shortly afterwards, I started to drag.  I slept through much of the week including Christmas Eve and Christmas Day.  The area around my right eye got puffy again, and on Christmas Night, I started having chills and checked into Brigham with a fever and a particularly bad nadir*.  Like last month, I have an infection in my right orbit.  (How unoriginal.)  I am recovering on heavy duty antibiotics.  However, after two episodes of this nasty, dangerous complication, is it worth continuing chemo?  Here are the risks and benefits:

Risks of continuing chemo:
1. Up to 11 more weeks of very unpleasant treatments for a cancer that may no longer exist.
2. An infection during a nadir which might, for instance, destroy my right eye.  (As everyone knows, it's all fun and games until someone loses an eye.)
3. Heart failure. (a rare, but scary side effect of one of the drugs)
4. Drain bamage.
5. Death from any of the above.

Benefits of continuing chemo:
1. Possibility that it will prevent a recurrence.
2. If the cancer reappears, the consolation that there was nothing more I could have done to prevent it.
3. It's so macho!
4. Continued physician-endorsed, unrestrained gluttony.
5. More fodder for the Tumoriffic Tales. (And let's hope that there isn't a sequel.  Sequels are almost never as good as the original except in old Trek movies.)
6. More mortified looks on the faces of people who ask, "What are you up to these days?"  (Priceless!)

The specifics of my tumor are extremely rare.  There are only educated guesses as to whether more chemo would improve my chances for long-term, disease-free survival.  My physician parents and their colleagues in D.C. (aka the Medical Mafia) emphatically say "stop! The risks far outweigh the benefits!"  My oncologist and surgeons haven't made a final recommendation, but lean towards completing a full or modified regimen.  And me?  Err, can I check what's behind door #3?

Stay tuned, and happy holidays.

--Tom

* A nadir is a temporary loss of immune function that occurs 7-10 days after some chemotherapeutic drugs.  During a nadir, infections are extremely dangerous and usually unfun.

 

 

 

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,

 

--T

 

 

Sent: January 10, 2006

Subject: A learning experience

Hello, all.

More fun in Tumorland.  Last update, on New Year's Eve, I had just returned from the hospital, and the infection under my right eye appeared much better.  The very next day, it looked much worse.  Was my recovering immune system causing transient inflammation as it eliminated the infection?  Could the infection be resistant to the home oral antibiotic that replaced one of the hospital IV antibiotics?  Could part or all of my graft be dying?  (How suspenseful.)

On New Year's Day, after a brief visit to the ER, I restarted that IV antibiotic.  Over the week, the inflammation was stably bad.  I arranged to go to New York this Monday to see my the Coach expecting to be in the operating room today to remove diseased or necrotic tissue.  But suddenly, on Saturday, it looked much better.  I went to NYC anyway.  I gave myself IV antibiotics on the train.  (That's pretty special.  Am I a member of something like the 'Mile-High Club' for that?)

The Coach took one look at me and said, "You're healing.  I don't know much, but I know not to mess with a winning hand.  Go home."  So I did.  Now, I am on IV antibiotics at home indefinitely (not so bad, really).  One or all of my chemotherapy agents will be eliminated for good given my tendency to get this nasty infection.

I guess I'll just count this as preparation for my future as an infectious disease specialist.

Ciao for now.

--T

 

Sent: January 20, 2006

Subj: And more learning

Hello all,

Bard answered the question from last time--what is equivalent of the Mile High Club for those of us who have self-administered IV antibiotics on a train?  The Needle Tracks Club.  Thanks, Bard.

I'm writing this from my room at Ben and Jerry's Hospital where I have received more chemotherapy.  The experts at F'in' Famous and Wicked Famous worry that this tumor could return in my lungs or elsewhere, and a second round would be less of a joy-ride than this one.  I will continue to get methotrexate on schedule and decide on the doxorubicin (the one that slams my immune system for days at a time) when the time comes to get it.  The dose will be lower to try and prevent another week in the hospital with an infection.  Actually, it's not so bad here.  As the 'Cheers' theme says, "Sometimes you want to go where everybody knows your name," and by now, everybody here does.

Meanwhile the area under my right eye is still slightly inflamed despite more than a month of heavy duty IV antibiotics.  It looks like the right side of my face hasn't had a good night's sleep in weeks.  No one has figured out why.  Perhaps it's time to resort to old practices--bloodletting, purging.  Oo.  No thanks.  How about even older--anybody have a spare goat I can sacrifice?  This might not be all bad.  The bag under my eye combined with a little weight loss and complete baldness (My hair deserted me again.) make me look a lot older.  A guy in a store thought I was LLC's grandfather.  How can I exploit this look before I return to normal?  Cheap movie tickets!  AARP membership!  The possibilities are endless, but time is limited.  Suggestions welcome.

Five more weeks of chemo plus 2 weeks of recuperation not counting delays.  Seventh inning stretch time.

Cheers,
--T

 

 

Sent: February 10, 2006

Subj:
 

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.
 
Nah.
 
So where do I get a sheep?
 
--T
 
* 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

Subject: Musings from the Heart

Hello, all.


Ten days until the (possibly) last chemo!  I return to
Ben and Jerry's on Tuesday for the last methotrexate, and, just between you, me, and the IV pole, it's grown tedious.  I have been forced to find new ways to amuse myself beyond the occasional episode of wretching. 

For instance, every time I'm admitted (as in every time I blow my nose), I get the same form to fill out.  I wonder whether anyone reads it.  So I've started playing.  It began with "Is there violence in your home?"  Reply: "Well, my toddler hits sometimes."  But now, my inhibitions are completely gone.

"What would you like to be called while you are in the hospital?"

Reply: "Phil.  No, Sam.  No.  Tom will do.'

"Why are you in the hospital?"

Reply: "I don't know.  Is it chemo?  Oh, yeah!  That's it!"

"What do you need to heal?"

Reply: "Stop chemo."

As for the big question---will you marry me?  No, the other big question--doxorubicin or not?  I could listen to my heart, but my heart says, "what the +
#$%* are you letting them do to me?  Why don't you have them beat up on the gonads for a change?"

Honestly, the more I learn, the less I want to know.  Stay tuned.  I have to figure it out by eight days from now.

--Tom

 

 

Sent: March 6, 2006

Subj: I can't seem to spit or get off the pot.

Hello, everyone.

 
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.
 
Deep breath.
 
--Tom

 

Sent: March 7, 2006

Subj: done.  Done.  Done!  DONE!

Yippee!

 
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,
 
--Tom
 
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. . .
 
Hello, all.
 
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.
 
Signing off,
 
--Tom

 


 

Unfortunately, there is a Part III.

 

 

All comments, suggestions, compliments, insults, and hate-mail should be directed to Tom@tumoriffic.org.