October 24, 2009

Not so clear

We got what the oncologist called "relatively good news" yesterday. It is not a synovial sarcoma, which was what was expressly feared. The tumor board at Memorial Sloan Kettering absolutely ruled that out. The tumor board came up with three possible things: the first two are benign and the last is a non-aggressive low growth malignancy. They just cannot be sure. Yeah, that's right, I stumped the tumor board consisting of specially trained radiologists and pathologists and oncologists.

So, here's what they recommend (and what I will be doing): surgery on Nov. 4 to remove the entire mass by way of a semi-wide excision. The surgeon will not go as wide as if it were a synovial sarcoma but not as narrowly as if they knew it to be benign. This means that I will have a 3 hour or so surgery and they will take a good chunk (but not 70% as I had once feared) of my triceps leaving me with months of physical therapy and a permanent impairment. There will be no chemo and probably no radiation at all. That's good news.

The impairment bit is bad news. I take tremendous pleasure out of my daily game of squash on the weekdays and my tennis on the weekends. That will stop for months and may not come back. If I suffer nerve damage during the surgery that he, a micro surgeon, cannot successfully repair, then I can really kiss full use of my arm goodbye. The possibility of nerve damage is quite real, we were told yesterday.

But this is still, mostly, good news. It is better news than we feared, if not as good as we were hoping for. I am not looking forward to the 4th.

Yesterday, emotionally, was a horrible day. I won't delve into the details here (or anywhere) as I am still numb from it all. Suffice it to say that I was a total basket case. Probably still am. Can't really just flip a switch and turn it off. The mental connective tissues are still stressed, I think, and just because most of the pressure was removed does not mean they snap back into place. No, I understand that there is no such thing as mental connective tissue (at least in the way I am using this) but that's just how I visualize and hence describe it here.

Thank you all for your notes and letters. I am sorry that I have not answered them; I will. They have meant a great deal, more than I can really say.

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October 22, 2009

Taking my temperature

The results of the biopsy, while unknown to me (and maybe to the lab and the tumor board at this point), are fixed and not susceptible to change. I don't know, at this point, what they are, but that lack of knowledge does not change the outcome. The outcome will be communicated to me on Friday (tomorrow afternoon) at my follow up appointment with the oncologist at Memorial Sloan Kettering. I grow increasingly anxious, nervous, fretful, scared.

For most of the week, I have managed to keep a fairly even keel. I have not had great emotional swings. I have chosen to believe that the diagnosis will be benign. I have seized on several facts and chosen to believe that these facts auger an outcome for the ultimate result. I have done so knowing that I am not a doctor, knowing that these facts may not really be that important in the great scheme of decision making, choosing to ascribe great significance to these facts anyway, fearing -- just the same -- that I have deliberately fooled myself into giving these facts great weight and allowing them to comfort me, to calm me. So, I guess that means I have still a nagging concern that my comfort is premised on a faulty foundation. But it is all that I have right now and so I seize upon it, I hold it close, I don't hold it up to the light, I hope that the holes which may exist are holes I have worn in it from touching it over and over in the same place, and I choose to take comfort.

Its just a coping mechanism, really. But it has helped.

I have been tired as hell all week. Partly, maybe, that's a lingering effect from the surgery. Partly, I have been sleeping poorly -- not enough and not terribly well when I do sleep. But yesterday I made it through an almost full day at work for the first time all week. And that was good.

I have been taking comfort from food, sort of. That's not really too helpful since I cannot exercise right now. But every night on the way home from the city, I buy a chocolate chip cookie to eat on the train. I have no explanation for this, or, at least, none which I care to explore and find.

As I said, I have been coping ok this week. Until last night. Last night, I began to imagine what my wife and I might do to celebrate a benign diagnosis. I thought, maybe I should wear a tie after all on Friday and we could go somewhere nice and get gloriously, gleefully, gratefully drunk. But then, then I had the thought, but what if the news on Friday is not good? And that's when I began to experience feelings of panic again.

That feeling of panic lingers even now. I don't know what else to say, really. Friday will come as it comes. I cannot hurry it and wanting it (and also not wanting it) to come will change nothing -- it will take the same amount of time either way. But we are not made to be rational at all times, are we? We are creatures of emotion.

And so, my stomach churns as the clock ticks relentlessly forward and I await my diagnosis, sometimes calm, sometimes terribly anxious. But always feeling blessed by my children.

Thanks for reading.

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October 16, 2009

At night

It is hardest at night, not to take counsel of your fears. At night, when you are the least capable of rationally examining a possibility for its realistic effects, that's when you are most vulnerable. You are not able to distinguish, to right your listing little boat of a mind, to make yourself say, "oh, stop it". That's where I was, again, last night. I woke at around 2:30. I was physically uncomfortable, sure. I cannot turn on to my right side to sleep and have to sleep either on my back or my left side. And I kind of have been keeping a pillow between my right arm and my rib cage. If the dressing over the wound presses against the mattress, it causes discomfort, sometimes sharply, but always at least dull discomfort. Anyway, I allowed, somewhere in the night, my fears to overwhelm me and I woke somewhat overwrought. Ok, that's not quite right. I was awakened by a combination of physical discomfort and being scared. Waking up mostly took care of the overwrought, actually. Getting out of bed, closing the door to the bedroom so that the light from downstairs would not wake my sleeping wife, that took away some of my fear.

And I freely admit to being scared. I don't want this thing to be cancer. You would not know this, but if it is cancer, this is relatively rare. Only, perhaps, about a thousand people a year in the country get this one. That's why I was seen so quickly at Memorial Sloan Kettering Hospital. That plus the fact that the tumor is actually pretty large.

Anyway, I learned last night that the doctor was unable to tell from looking under the microscope whether it was malignant or benign and that the final verdict must await the tests that will conclude some 9 days from Wednesday. I will learn what it is on the 23rd. In the meantime, I will try to control my anxiety, which is actually sometimes palpable. I mean, I can actually feel my heart race. It was worse, mind you, before I got the results of the CT scan when I was terrified that (1) it was cancer and (2) that perhaps it had spread to my pulmonary system -- the one fatal consequence for me that the doctor had identified. That was when I was terrified. As I asked, brokenly (and I mean brokenly -- I could barely get the question out, it took at least three tries), would I live to dance at my daughter's wedding? That is what I was focused on -- my children.

It is difficult not to let them know how I am feeling. But that is not a fear that I will visit upon them. I mean, if I can barely deal with it, and I actually have some fucking perspective on this, how could they? Right. They cannot. So, one attempts to cope. And so far, it seems to be working out ok. They seem unaware, unchanged. That's good.

In the meantime, I wait. I don't wait very well. But for right now, I wait and the thing that bothers me is that this waiting period, which is terribly unpleasant, might turn out to be, in retrospect, the best part of the whole experience. That is the thing that I really hate. I feel almost as if I have to enjoy this waiting period because, God forbid, this might be the last time when I can believe that I am cancer free, when I don't have to think about radiation/chemo/more surgery. This waiting time might be thought of as the time of innocence. The time after might be the time of experience. I dimly think that William Blake wrote poems about that, several hundred years ago. Anyway, that is ultimately what freaks me out right now, that my time of innocence might come crashing down around me with one simple sentence on the 23rd -- your tumor is malignant.

I'm not sure if it helps to write this out. This, after all, might just be an extension of my night fears.

But it sure feels real.

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October 15, 2009

so, so much to say

I am typing left handed only for the moment as my right arm is in a sling, per the instructions of the oncologist-orthopaedic surgeon who performed an incision biopsy on a large mass on my right triceps yesterday morning. I am coping, sort of.

I don't know if this is cancer. It may be, but I am strongly hopeful that it is benign. Benign is an awfully bland, beige sort of a word for a concept of such stunning personal significance. I believe that this mass, this tumor, is not cancer, but I have been seriously freaked. Still, even if it is cancer, the ct scan shows it has NOT spread to chest/lungs/heart, so that's very good news. It also has not gone into the bone or nerves. That's also good.

I expect I will write more later but am tired and need a nap now.

Thanks for reading.

Posted by Random Penseur at 08:07 AM | Comments (5) | TrackBack

October 10, 2009

This still works, I gather

I am curious to see if, after so many months have elapsed, my blog still works. So, let's give it a shot.

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