Rumination 8: Whodathunkit!

Rumination 8: Whodathunkit!

August 4, 2007

by Tom Vogl

Written July 27, 2007:

I start with the good news: Much to everyone surprise I am still asymptomatic, feeling fine, and operating at 100%.

Before answering the question, how come? I need to write a coda to Rumination 7 in which I reported my final conversation with the medical oncologist in which I requested and received his summary of the radiology report. What I discovered several days later when I obtained the hard copy of that radiology report was the statement:

ABDOMEN/PELVIS: There has been interval decrease in FDG-avidity of

the right hepatic lesion without a clear CT correlate with an

uptake ratio of about 1/2 that of the brain (6.5 SUV vs. 13 SUV)

previously with an uptake ratio near 1.0 (7.2 SUV vs. 7.8 SUV).

No other abnormal FDG activity is noted in the liver.

Simply put, this means that the hot spot in my liver, which is quite reasonably presumed to be a metastasis, has in just seven weeks halved its metabolic activity, a measure of its rate of growth.

Since every other physician who has seen this data has expressed their surprise and even opined that the spot might not be a metastasis, I find it both remarkable and extremely distressing that my then medical oncologist failed to mention this to me. In fact, I am still angry about it.  So angry, in fact, that in thinking back over my life to see whether I had ever been so angry before, the only occasion which I found comparable, (not even during the at times unpleasantness surrounding my divorce in 1970), was back in 1957 when a coworker at Westinghouse Research Labs, Dr. Ernie Sternglass, out of curiosity opened the door to a furnace and, I thought at the time, ruined an experiment that had taken two weeks to set up. I have no idea what my former medical oncologist was thinking when he withheld that information from me. To me, as a patient, it certainly suggests the possibility of the appearance of a conflict of interest between his role of a personal physician and the director of an investigational drug study. What should be done by society at large to avoid such a perception in the future is a difficult question with scientific, psychological, and political components.  I have my own opinions, but they would take us far a-field from the intent of these ruminations.

I am delighted to report that Dr. Norris, for whom I have the highest professional and personal regard, is back in the loop, as is Dr. McAnaw from Hyannis, whom Katherine and I both admire. Dr. Norris has ordered PET and MRI scans to be done on July 31st.

Written August 4, 2007

I received the radiology reports yesterday. Aside from a hysterically (word deliberately chosen for its derivation) funny computer generated typo, the results of the scans are unchanged in the ten weeks since the scans in late May.

{Here is the humor: The radiology report on the PET/CT scan, states in part "ABDOMEN/PELVIS: <clip> There has been a hysterectomy and a bilateral salpingo-oophorectomy. There has been a prostatectomy. <clip>" I conclude that I am a much operated upon true hermaphrodite.}

Unintentional humor aside (but it did cause much giggling and they do say laughter is the best medicine), this news is, literally, astounding. I have a very rare version of a relatively common cancer that, when metastasized as mine is, has no known treatment and is almost inevitably promptly fatal. Yet here I am, when I should be symptomatic and going down hill rapidly, feeling fine without any radiological evidence of disease progression. Let me hasten to say that this is not unheard of, just extremely rare. I am told of a surgeon at Mass General who had metastatic melanoma that went into remission for a decade. None the less, such stasis is as rare as my disease, and the driving force behind the stasis unknown.  To say that the proximal cause of the stasis is that my immune system kicked in is undoubtedly true, but contains no more information than saying 'he went into remission'. To be a useful statement, an explanation of what caused the immune system to kick in is needed, but lacking; "not a clue" is the operative phrase.

Friends and relatives have stepped into the breach and offered a variety of causative explanations. In no particular order, they are:

A Jesus freak in Kansas City prayed for you

Katherine's support

Someone turned the right prayer wheel in Tibet

Ingesting large quantities of flax and fish oil

Miracles happen

The relaxed Vineyard lifestyle

Tom's positive outlook and attitude

The good karma that chickens create

Taking COX-2 inhibitors (Celebrex)

Proximity to Chilmark (see X-Files)

You are invited to add your own favorite explanation.

In fact, nobody known what caused the remission and nobody knows how long it will last. However, both Katherine and I are inordinately pleased that it is happening and we will happily take whatever additional time this unexpected victory of immune system over cancer will give us. In this case I will even forgo my usual expectation that I will not disrupt other people plans by not doing what I say I will do, when I say I will do it, including dieing on schedule.

I certainly appreciate and enjoy the reprieve. None the less, it is most definitely disconcerting and unsettling (albeit in a far better way than the alternative) after six months on death row to be suddenly given, not a pardon, but a stay of execution of indeterminate length. While it is certainly true that all living things live with this uncertainty, I can assure you from personal experience that it feels very different after six months under a death sentence.

What happens next? The first step will be conversations with Drs. Norris and McAnaw, and it is far from clear to me what they will advise. A number of possible diagnostic tests suggests themselves ranging from the essentially non-invasive (chest and/or liver CT or MRI with contrast, an ultrasound of the liver with a new liver-specific technology), to the mildly invasive (a needle biopsy of some lymph nodes in the neck), to the more invasive needle biopsy of the lesion in my liver. Further down the line might be removal of some lymph nodes and radiation therapy. All this is very much up in the air at the moment. Lurking in the back of my mind is the realization that what turned my immune system back on is unknown, as is any knowledge of what might turn it back off.  Consequently, it seems reasonable and prudent to consider any intervention in terms of what it might do to my immune system. I learned long ago that if one has an old piece of equipment or machinery that is running smoothly, one does not tinker with it.

Life is interesting – stay tuned.