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Part II, Chapter 3: The First Cut is the Deepest

 

 

Sent: July 7, 2005

Subj: Tumoriffic Update From K

 

Hi,

 

After 14+ hours, surgery is complete, and all went well.   The surgical team got all of the visible tumor, were able to spare Tom's right eye and palate, and the facial reconstruction went well, too.  All three surgeons expressed their pleasure with the results. 

 

Tom's parents and I finally got to see him in post-anesthesia recovery a little while ago.  He was still heavily sedated, so not yet awake, but looked much better than I imagined he would.  I am in awe of his surgeons.

 

Thanks for all your good wishes.  I'll be checking email regularly, and will give Tom your messages once he's awake and feeling well enough to hear them.

 

Best,

K

 

 

 

Sent: 7/11/05

Subj: Bumps in the Road for Tom

 

Tom's had a rough weekend, but things are now looking up.

 

Tom has been uncomfortable for past couple of days, not surprisingly, I guess.  He's also been a bit disoriented at times, and just generally feeling pretty miserable. 

 

Then yesterday evening, Tom started leaking cerebral spinal fluid from his nose, indicating some kind of leak in the dura (tissue covering the brain).*  For the nonmedical people, the problem with that is that if fluid can get out, germs can get in.

 

His neurosurgeon decided that the leak had to be plugged.  [Itís really hard to get a good custom-made cork. ĖT]  The neurosurgeon and the plastic surgeon operated this evening to repaired the defect, which was very small.  The surgery went well, and his docs are not expecting that this will slow down Tom's recovery much. 

 

We're all hoping and expecting that Tom will start to feel better over the next few days.  He'll be back in F'in' Famous Cancer Hospital's neurological ICU for at least a couple of days more, so the address I gave out the other day for cards and letters is still good.

 

I read a lot of your messages to Tom today.  He was very touched by all of your warm wishes.

 

K

 

* I was in and out of consciousness for most of my time in the neuro ICU, but I remember vividly the sinking feeling I had when I realized that the salt water that was flowing down the back of my throat was my own cerebro-spinal fluid.  The condition is much less dire than it sounds--most people with CSF leaks live to tell the tale, but it sure feels ominous when it happens.

 

 

Sent: 7/14/05

Subj: Last Update on Tom for a While

 

Hi,

Tom moved out of the neurological observation unit and into a regular bed on Wednesday.  For anyone planning to send mail, be advised that he probably won't be there long enough for anyone to send him anything there via US postal service.  Because the surgeons are saying that Tom can probably go home on Monday.  A better bet would be to send those cards and letters straight to Belmont.

Tom continues to improve daily.  Today he walked for the first time since his surgery.  The surgeons removed his right fibula (the smaller of the 2 main bones in the calf) along with some calf tissue to reconstruct his face, so the right leg is a little sore.  But aside from some tenderness, and stiffness from being in bed for a week, walking wasn't a problem.  We're told that being short a fibula won't limit Tom's range of activities at all.  Apparently the fibula is one of nature's backups systems, like having 2 kidneys when we only need one.  Go figure.

This will be my last update on Tom, I think. I'll let him take over whatever updating needs doing from now on, since he should be home from the hospital soon.  

Best,

K

 

 

Sent: July 18, 2005

Subj: Home; elated

 

I came home today to LLC and K.

I look kind of like a human baseball--lots of stitches and staples.  Maybe I could start a new career as a team mascot.  By the way, if you're ever in a neurological intensive care unit, under no circumstances should you watch the bug guy on Animal Planet.  Things are surreal enough without watching some freak peal giant bugs off his own face.  (No, this was NOT a hallucination.)

As tough as that ordeal was, so far, I could not be happier.  The Coach (ENT) and Mr. Rogers (Neurosurgery) ended up needing to do far less than they had led me to anticipate.  As a result, The Fixer (Plastics) was able get a graft from a far less painful spot than otherwise.  I have my own face, practically unchanged.  The tumor, perhaps shrunken by chemo, was stuck out on a stalk invading nothing, coming out as one piece.

Of course, the proof is in the pathology, and it will take a few more days of soaking in  special blend of herbs and spices before they can analyze it.  Even if they got it all, I will need chemo probably into November to be safe.  But it feels like the wind is finally blowing in the right direction.

For now, rest.  Heal.

Peace until pathology,
-Tom

 

 

Sent: July 29, 2005

Subj: Pathological anxiety

 

On Monday, my family and I returned to the big city to follow up with the surgeons.  They were generally quite pleased with my progress, although they still won't let me play rugby or take up kick-boxing.  Mr. Rogers, the neurosurgeon, told me never to bungie-jump again (True!).  They were a little disappointed that my right eye has still not lined up properly.  As a result, I see double.  On the other hand, it kind of reminds me of one of my film idols, Marty Feldman, just not so buggy.  It should correct itself soon or, if not, it can be fixed.

 

The pathology news was mixed.  On the one hand, the surgeons got all of the gross tumor.  (Arenít all tumors gross?)  On the other, there were some tumor cells left at one edge of the specimen, which sounds bad and gives me the creeps, but with radiation therapy the results are indistinguishable from perfect margins.

 

The bad news is that the tumor was only 20-30% necrotic--the chemo I have gotten has not been very effective.  This probably means more nasty drugs added to the regimen, and perhaps a longer course.  I am going to be so ready for the oncology section of the boards!

 

Meanwhile, the surgeons want me to heal for another week before chemo, so I get an unexpected vacation.  It's off to Cape Cod.

 

--T


 

Next, Chapter 4: Burn, Baby, Burn!

 

 

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