[10:37pm]
Today was my appointment... it was exhausting. I left my house at 10:30am and returned at 7:30pm for a 20 minute appointment with my doctor. Transit time was 2.5 hours (one way), labwork had an hour wait, and the clinic appointment had an 80 minute wait. A whole day wasted; I'm so tired of this stuff. It will be much better once I have my own transportation, of course.
Then I have two more appointments scheduled two weeks from now. So I have freedom for 12 of the next 14 days... the price paid for two 20 minute appointments. Bah. But enough complaining...
I did get to learn a few things. Top on my list was the bone marrow biopsy. Apparently, the biopsy is to determine whether I had any chromosome damage/toxicity due to the high dose chemo. This sort of damage could be classified as pre-cancerous. So, unfortunately, it looks like it is justified. My doctor plans for two more biopsies (coupled with pet-CT scans): one about a month from now, and another in 4 months. Fortunately, it doesn't look like the bone marrow biopsies will be a part of the routine in the years to come.
I then asked about transferring my care to my local oncologist. I explained how routine transportation to and from Stanford would make school in Berkeley quite difficult. My doctor ignored the initial question and instead explained how she felt that it was too early (by about 3 months) to return to school. I then firmly explained that "for the sake of my happiness, I need to return to school... soon." Surprisingly, she just nodded and then made sure I was taking a reduced courseload. As for transferring my care locally, she said that should begin at our next appointment, two weeks from now.
She also scheduled another CT scan before my next appointment. It has nothing to do with cancer -- there was a subtle "Nodular Grand-Glass Opacity" seen on my last CT scan taken while I was hospitalized. It usually indicates a fungal lung infection of some kind, that I obtained due to my severely impaired immune system. From what I gather, it is typically of little concern at this stage, and it usually fixes itself when confronted with a stronger immune system... it is only a problem when it gets out of hand. But, as my scans indicate, it is very subtle.
I then asked: "In your opinion, is the cancer gone?" Her response was something like, "Right now, yes, I believe it is." I didn't like that response... something in the way she said "right now" seemed to stress the possibility of a relapse. Or perhaps she was just trying indicate that further intervention, such as radiation, would be necessary. Or maybe, by "right now", she meant "with the information I currently possess, I believe..." She could be trying to indicate that the results from the bone marrow biopsy or pet-CT scan would change her opinion. Regardless... that is what I am left with.
We also talked briefly about the mask: I am now officially allowed to take it off in most situations. I only have to wear it around sick people, dusty outside areas, or in hospitals.
Also, radiation was briefly mentioned. It does look like that it will be able to be handled by my local radiation oncologist. Woo-hoo! She said we will talk about it further at my next appointment.
Lastly, I asked about plane travel to Michigan. I had an invitation to visit Liz's family and wanted to see what my doctor thought. When I told her the date, she adamantly opposed the idea. "Maybe if it were two months later than it is," she said. Oh well. Heh... the thought of wearing that huge scary mask on the plane... they'd probably think I was a terrorist with a gas bomb or something.
That's it for the appointment!
On my way home, I was actually feeling quite down. I'm not exactly sure why... maybe it was from something my doctor said, or from exhaustion from the day of traveling, or perhaps from cancer stealing yet another day of my life. Accordingly, I stopped by 7-11 to buy my ultimate comfort food: nachos.
I've bought these particular nachos countless times in the past, and today... they didn't taste very good. Just another brick in the wall.
I'm just so tired of all this stuff. At first it seemed like I had a limitless capacity to battle cancer -- an infinite endurance. I think perhaps I have less than I thought. Those cancer warriors out there... the people that fight this stuff for years and years... how do they do it?
Maybe it's just post BMT stress/anxiety/depression/trauma whatever. It's probably temporary. But it feels like something has taken it's toll.
Barbara mentioned that she didn't agree with my "head in the sand" strategy. Of course! It's a totally stupid proposition! It's not a strategy at all! But, you know, those few moments in the sand are quite peaceful...
Monday, December 1, 2008
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6 comments:
Hey Austin, just wanted to send you some mojo to help get you going (sorry to hear the nachos didn't work ;). Don't sweat not being able to go to Michigan (I'm originally from there) as it's probably snowy and below zero right now! Also, don't worry about your doc's response, they always seem to answer questions like that as to cover their ass. With all you've been through, you have earned the right to be in remission! Hang in there, Chris
What doctors hear is not always what you meant to say. In this case, saying "In your opinion, is the cancer gone?" caused her to anticipate that your next question would be, "If it is gone, can I skip the radiation treatment?" So of course she is going to qualify her response with "Right now...". Studies show that radiation reduces the rate of relapse, and the radiation is especially effective in the case of bulky tumors. Remember what Checci said after your 2nd ICE PET scan in which your tumor activity went from 5.5 (active cancer) to 2.0 (normal range). He said, "It's greatly to your advantage anyway to complete the BMT..." He was doing the same thing, trying to guide you away from cutting your treatment short. He was saying, "You have a remission now, but it can come back still." The problem is that once cancer is fairly suppressed, no doctor can be sure whether treatment can be stopped early. It would be guesswork. They don't know, but they do know there is a mathematical possibility you will relapse, and they know that probability goes down to a minimum once the complete treatment is done. They want to be SURE.
Pardon the advice which follows. Ignore it if you like. It's a bit preachy.
I can hear the post-traumatic weariness in your words. You need some mental and emotional rest. One good way to do that is to open the cage door. Get yourself into an environment totally different from what you have had recently. You've been trapped indoors, so get outside with a big sky overhead. You've had nonstop activity around you, so get some power-sleep, deep sleep disturbed by no one for long stretches. Sometimes exercise brings on that kind of sleep. You've been concentrating on yourself, now find something outside yourself to concentrate on, like a person, project, skill, diversion, hobby, or altruistic purpose. If possible, combine all these into one. I don't know how you would do that. Maybe camp out somewhere and fly fish all day, sleep peacefully all night. Whatever. 2 out of 3 isn't bad either. Anyway, I've felt some of what you seem to be feeling. It was a kind of post-fighting-for-my-life emotional meltdown. It only starts once the emergency is over. In my case, I defused it by telling myself, "I've been gifted with continued life. It's the best gift in the world. I don't know how long it will last, but it would be a shame to waste part of it absorbed in meaningless emotional reactions to past experiences." With that self-admonition, I was able to push through it, after a while.
Good Morning Austin,
Bummer on the nachos dude. An old favorite letting you down after a long day. Bad.
That's a long car ride for a 20 minute appointment and lots of waiting around. No wonder you are exhausted. I hope you are able to get plenty of rest today.
You had so much good news to report on your blog. I'm happy that you have your doctor's blessing about returning to class this semester. Can I be nosy for a bit? What is your major? Are you in grad school? What career do your ultimately hope for?
As for the heavy. "I"m just tired of all this stuff." I think you summed it up perfectly with that statement. In the end, you may find that you are "changed" by what you have endured. I suspect that any change, however, will be tempered with time.
Take care.
Dearest Austin,
I couldn't help but comment today; as I have SO felt, and 'been' there. And all I can say, is, it does get better. The transplant process is a very difficult one, and I think sometimes, we don't give ourselves enough latitude to recover, or breath, or just... be sad?
You have been through, so much. You are allowed to feel the way you do. Some bounce back faster than others, but you have your goals, you have your wants, and needs... and you're seeking them from your doctor.
To say, dealing with cancer is exhausting is an understatement in itself. No one, except us, will ever really get that. But, for now, I think you give yourself time. Allow yourself to grieve. And fear, if you need to.
But, just don't let it consume you. Like Chris said, you have earned remission.
You are stronger than you think sir, we all are. But do not beat yourself up for feeling 'down.' Or anxious. or tired.
You just endured, a huge, huge event. And believe it or not - you're human.
Hang in there dear, for now, I'll leave you with one of my favorite quotes...
"The world breaks every one
and afterward,
many are strong at the broken places."
One day at a time Austin. One day at a time.
Sending tons and tons of Love,
Bekah
Ah - you're in good hands :0)
Everything I was going to say has been covered by the wonderful Skymist (you ARE awesome!) and the beautiful Bekah - listen to their words, they know what they're talking about!!
Having 2 young'uns we didn't get the chance to do the whole recovery period and Wullie's work wanted him back asap so he just jumped straight back on the treadmill.......believe me when I say we're STILL recovering emotionally and physically - so take that time, recover and LIVE, it'll be worth it!.........Vx
I don't know, man. If anyone I know could "handle" the cancer, it's you. Mostly because of all our friends, you've already wrangled more than all of us put together. Except maybe Sago.
Speaking of him, the news about his discharge combined with your "not right now" cancer is making this a pretty good Holiday even if I am destitute and haven't seen you guys in a long time.
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