[10:30pm]
In two days I will return to Stanford for a follow-up appointment. I will arrive at 1pm, get my labs and x-rays, and wait until 3pm for my clinic appointment. It feels like a "return" of some sort... like I've been on a vacation from all this cancer stuff lately. I don't want to return...
I've been getting established in my new home... organizing my life and slowly putting the wheels back on the track. I got a new desk today and I totally love it. I've been spending my day casually setting up my computer and getting my equipment on-line. Everything is getting back in order and I don't want anything to get in the way of that. It's nice to be home... it's nice to no longer be a nomad.
I've been thinking about the purpose of future bone marrow biopsies and CT scans. I almost want to skip all that and assume the cancer is completely cured. Ignorance is bliss and all that. If you think about it, it's a win-win situation: 1> Cancer stays away and I don't have to worry about it, or 2> Cancer returns and shortens my life-span, but I had a carefree existence.
For treatment to swallow up the last time one has... is a very sad thing.
Of course, there are also plenty of people out there who have stuck with treatment despite the odds and have beaten the big C.
It's a gamble: enjoy your remaining time or fight and suffer for the chance of more time.
Now I know these thoughts should be the furthest from my mind, but to consider ignoring the advice of experienced doctors... it requires one to check the odds and evaluate the deck.
I know they want to keep giving me bone marrow biopsies to "re-stage" my lymphoma, but I feel that doesn't really make sense if I am only stage I. If it progresses to stage II, then fine... but to go from stage I to the marrow... seems unlikely.
In other words, I am fine with the doctors assuming that the cancer isn't in the marrow. They can call me Stage I?. For the pleasure of never being subjected to that amount of pain again... I am fine with that.
Also, they may me to go to Stanford for the radiation part of my treatment. I also don't see the point... why not go to the local oncologist for that? I'm not about to sacrifice my next semester of school just because a doctor is uncomfortable coordinating with an unknown radiation oncologist in Berkeley.
For that matter, I'm not about to let anything interfere in my next semester, cancer be damned!
Saturday, November 29, 2008
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4 comments:
Hey A (it rhymes, I had to do it!)
Good for you and your 'up yours to cancer' attitude! I obviously hope that transplant has done its thing and beaten away all traces of this stooopid disease - but should it be even more stoooopid and stubborn than it already has been, rest assured there are many, many people out there who are continuing treatment AND continuing a full life. You know Bekah, right - she's achieving SO much despite treatment and Adrienne? 11 years she's been battling and though it's not always easy she's still at school and continues to amaze everyone with her intellect and stoicity in the face of adversity!
All I'm saying, mister, is that if you have to ponder the worst case scenario, during your musings don't completely dismiss the idea of further treatment.......a further relapse actually seems to hold MORE choices rather than less, weirdly, and you'd be able to find something to keep the crap at bay whilst still fulfilling what you want from life........lecture over......just telling you EXACTLY what I tell Wullie when he has these thoughts (unfortunately he still has them even 18 mths post-transplant)......hope your appt goes well on Monday and you continue to enjoy rebuilding your new life..........Vx
Concern about the bone marrow biopsy pain is unnecessary, remember? We did our homework and prepared for future biopsies by getting a local oncologist on your side, complete with your medical records in portable form fit to travel if needed. If your local oncologist is not willing to do a merciful biopsy, off we go to that hospital which promises biopsy with sedation. Worst case: a long drive in the car, or a short commute hop by air.
Given that, I do not support a head-in-the-sand posture. Modern medicine is the reason you have a curable disease instead of an incurable one. To restrict your own information and options and early detection is to voluntarily give up a portion of that benefit. Remember that drugs are being developed right now which may make HSCT obsolete due to their powerful effect on even relapsed cancer. Every year a cancer patient survives greatly increases their chances of further survival due to the rapid and accelerating advances in treatment. You're the patient, though, and have the right to refuse treatment, but doing so under these circumstances just doesn't seem reasonable.
However, I think you are right about the radiation oncologist. You developed a good relationship with one already and unless Stanford is going to do something unique like hit you with heavy ion bombardment using SLAC I think we should try to talk them into letting you get more local treatment, but allowing Stanford to evaluate as usual.
Hi Austin
I am happy that you are getting on with your life and physically feeling better every day. Such good news!
It seems that the mental part of it all is what's giving you some trouble. Understandable, for sure. You've just completed a very grueling treatment and transplant. It's no wonder you have the thoughts and feelings that you have right now.
I am hoping that time and some great scan results will ease your mind about the future.
I realize you didn't ask for advice, so you may want to stop reading now.........okay, fair warning.
My advice is to concentrate on the present. You are feeling pretty good right now. Until there is a bad scan or cancer symptoms, then don't let the "what if's" creep into your life. Don't let them take over the present. If the time does come that you need further tests or treatment, then you can get right back into your fighting mode and deal with it as you see fit. But until then, live your life, go to school, and ENJOY!
"The world is your oyster". Actually I'm throwing your own quote at you. Yesterday while Brielle and I were going to our violin lesson, she told me about a time she was shopping with you and you said, "The world is our oyster." She asked me what that meant. I had to think. I really don't know where the expression came from. She wondered if it meant that it meant we might find a pearl inside. I told her it meant that life was full of opportunities and we were free to choose whatever we want. But her definition works too. So to you I say, be happy, because "The world is your oyster."
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