Today I had my first appointment with my oncologist since being discharged from the hospital. They took my vital signs, took some blood, and looked over test results. Basically, so far everything is going as good as could possibly be expected. The bottom line is that I have a tumor in my chest that the chemotherapy will try to reduce. They've done all sorts of other tests trying to find any sign of the cancer spreading anywhere else, and everything has come back negative.
So my schedule for the next 24 weeks is that every week I have blood work done, and every third week I have a day of chemo. 8 cycles planned. If I recall correctly (not looking at my notes right now), halfway through we take more scans to see how I'm doing. Once the chemo is done, then I move on to radiation. I don't really know much of the details of that yet -- that will involve another doctor, but for now that's in the future.
While I'm feeling far from perfect, things continue to go pretty well with my body. There are hour by hour ups and downs. I'm tired a bit, so I'm trying to take it easy and get plenty of rest. (Although I probably should start blogging earlier in the day, but Dylan has this way of not wanting to leave me alone when I'm trying to type on the laptop). I'm still coughing somewhat, and in pain somewhat, but WAY less than a few weeks ago.
I'm still trying to figure out just what's up with my diet and how I ought to be eating. As I think I mentioned before, I started out before all of this at about 149#, and bottomed out around 126#. They pumped me way full of fluids in the hospital, and in one day I shot up from 127# to 134#, and then the next day to 144#. I came in looking emaciated, and soon was looking bizarrely bloated and puffy. (I even had a little trouble getting my shoes on to leave the hospital.) Since then I've dropped to 136#, and I'm starting to look a little bit more normal. So I've got these conflicting desires going on. I want to lose all of the ridiculous water weight, but I also really need to start consuming more calories and trying to put back on some fat and muscle mass. But eating is still causing some issues (although again WAY less than a few weeks ago), so I'm trying to take it easy and not overdo it too much. But I basically have permission from the doctor to do whatever it takes to put on some weight in a way that my body agrees with, whether that's eating my fair share of sweets and fatty foods (hopefully I can feel good enough to resume my on-hiatus enfatuation with David Lebovitz), or smoking pot (although echoing jg's sentiment from his cancer recovery, I'm not really sure if I'm in the mood to be stoned all of the time).
I'm down to just a single morphine pill a day, which may be partially what's contributing to my overall good spirits, although that's also I believe likely a side effect of the Prednisone.
Only a little bit more time to go (I'll have to check the meds, but I think just one more day) before I'm off of the Prednisone, and I suppose that's when I'll be able to better evaluate how I'm really feeling. Hopefully the crash won't be too bad. What the doctor wants to do is this time just stop cold turkey and see how my body handles it. If it's not so good, then next time we'll try a more gradual weaning off.
4 comments:
Man, it's wild how bodies are different. I'm on 10mg of prednisone and I really want to get off it. I'm actually starting to get used to it, but I know it's contributing to my shorter-the-usual fuse and probably (and this sucks) lack of sex drive.
Are your taste buds suffering yet? There were sooo many things that tasted like crap to me. I hope you never get that. The thing is, as you mention, the chemo goes after quickly dividing cells. So your tumor is a target! But taste buds and other mouth cells can be affected too.
But if you do, the one thing that worked for me all the time was..... drum roll please.... POP TARTS. I lived off pop tarts and milk for a few weeks. Then again, I was neutropenic. If you can eat food from the outside, stuff like good thai or chinese fatty duck is a good choice.
We will talk soon, my friend, my friend.
My taste so far seems thankfully mostly unaffected. A few times things don't seem to taste quite right, although it's hard to pinpoint exactly what's off. Water sometimes seems to taste a bit wrong, which is kind of bizarre statement to make, since it's not exactly something you usually think of as having much flavor.
I'm gonna guess that your statement about bodies being different is pretty much on the mark here. The notion of existing on pop tarts and milk sounds pretty gross to me.
I'm trying to take it easy with the fat and gradually work things up. I do need some fat to start putting on weight, but I'm worried about going overboard with anything too rich. And as sad as it is, I should probably avoid Thai food for now. One of my worst moments a couple of months back with respect to my stomach was after a Thai meal -- the fat from the coconut milk combined with the spice was just too much for me.
I'm holding out hope that eventually I can put this behind me and celebrate with a full blown Wing Ding extravaganza, but it'll probably be a while out.
Oh, and I miss beer. When the holiday beers were coming out coincided with a brief uptick in how I was feeling, and in a burst of somewhat irrational exuberance we went out and bought a bunch of fancy beers for our planned annual Christmas beer cocktail hour. Which is also on indefinite hold, although thankfully most of those kinds of beers will either hold fine, if not get better, with age.
I know there is nothing exciting about it, but Ensure and other similar nutritional drinks were a bit help to me when my Crohn's was bad and I was on steroids. The 'vanilla' flavors are the least artificial tasting, I think. If you get the 'plus' version you can put away 350 calories in about 30 seconds, with very little effort.
I always thought it wouldn't be hard to make your own version of these with corn syrup, soy milk, protein power, and some kind of sweetener, but never got around to trying it.
-Jeff
On the weight gain endeavor, you should break out the bread maker once again!
Erin
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