Road Notes: August 16-17th, 2013
Okay, so I was wrong about how much detail from the trip these contained. If these seem a little more disjointed than usual, it's because I wrote them with frequent interruption for conversation and happenstance. Normally I write in a cone of silence. By cone, I mean couch; by silence, I mean not talking to anyone.
August 16th, 2013
I'm writing this with actual pen and paper from the backseat of Mom and Dad's car as we drive along i90 from Seattle to Spokane. At least, I think we're headed for Spokane; a lot of directions and places have been mentioned, and to be honest, I've been somewhat distracted by the prospect of actually being home, and also by Mom's stream of consciousness observations regarding the countryside. In all fairness, i90 from Seattle to Spokane is, at least thus far, properly picturesque, abounding with mountains and trees and such (it turns out that, yes, we are headed to Spokane).
Since I'll be home in a few days, I thought I'd put out a small warning: I don't look like me. I have Pred Head, and Pred Torso, Pred Legs, Pred Everything.
Aside: Pulled over to the Ernie's at Moses Lake, and it had the cleanest gas station men's room that I've ever seen. So I pooped in it. You have to understand the level of opportunity a clean men's room provides. Honestly, gas station men's rooms usually look like every person that has ever walked into them has just unzipped and proceeded to relieve themselves whilst performing jumping jacks.
Now, when I say Pred, I am referring to prednisone. Prednisone is a steroid, a glucocorticoid to be specific. It acts on many body systems and is strongly T-cell suppressive. In the medical world,. it is a short-term magic bullet for almost anything related to inflammation, auto-immunity, or the immune system in general. It has been described to me as a panacea, but to stress, in the very short term. When taken over the long term, one encounters diminishing returns coupled with a host of side effects. I was prescribed it, at a dosage of 85mg/day initially, about three months ago, in order to deal with acute GVHD, which it did, rather promptly. Then, I was simply on it for a little while to make sure that the GVHD was completely taken care of, and then I began a long, slow taper, of which I have three more days. Normally, with a short prescription of prednisone, and with a patient who is neither taking immune suppressants nor at risk of GVHD, a prednisone taper does not take months; my taper has taken two. As a result, I am resplendent with side effects: buffalo hump at the neck, a big round head with chubby cheeks, bloated, carrying a heavy spare tire, and I have back pudge. I've never had back pudge in my entire life, even when I was a fatty little thirteen-year old, I didn't have back pudge. Further, when taken in the long term, prednisone causes significant muscle wasting. My legs, which had become rather toned and fit from daily minimums of six to seven kilometres of walking and the regular taking of six flights' worth of stairs, are now squishy. My shoulders are nonexistent. It is well sad.
The upshot of all of this is that this is a profoundly temporary condition. Once I stop taking the prednisone the effects will rapidly diminish, most being gone after a couple of weeks. The full recovery will take longer, probably two months, but I can help it along with diet and exercise.
There is more to discuss, but that is going to wait until tomorrow.
August 17th, 2013
Let us get into the "more".
There are two things I would like to discuss, the first being that after three separate bouts of chemotherapy, my hairline and overall follicular density have taken substantial casualties. I've always assumed that there would be an economic recession on the top of my dome, but I thought that I had perhaps ten or twenty years to get properly used to idea, as it progressed in a gradual manner. Perhaps it would have proceeded in a slow enough fashion that I could have deluded myself into thinking that any combover has ever looked good on anyone. This would be sort of like how, after spending too much time in the engineering building on campus, I might, after refraining from shaving for several days, take a look at the results in the mirror and think to myself, about a beard, "...maybe?"
Seriously, my bald and balding brethren, everyone knows when you have a combover, and we all want to say something. Well, if I'm going to have several square centimetres of extra forehead and a sparsity of keratin filaments above said forehead's expanding horizon, then I get to tell other baldies who have opted for the combover the bald truth:
It looks terrible.
Get a haircut, shave it, buzz it close, I don't care, as long as you do something, anything other than a combover (or a toupee, while we're on the topic).
Wow, that was satisfying.
Moving onto the second thing, which is a much bigger deal. My skin has resumed bugging out at the slightest provocation, and while it is not yet as serious as it used to be, it's making efforts in that direction, which I find troubling, because it's from cancer. It's my old lymphoma, still poking around. I went into the transplants expecting this afterwards, because proper graft versus lymphoma effect can take up to two years to fully resolve the preexisting condition, and the indolent form of mycosis fungoides is driven by a vanishingly small number of T-cells, which are not affected by chemotherapy. These T-cells have remained local and have had time to proliferate during the time of prednisone and tacrolimus, both of which are indeed T-cell suppressive, which, you would think, would also be suppressing the T-cells causing the skin effects. What actually happens is that because these drugs are systemic in effect, what they are mostly doing is inhibiting the T-cells my body is making from the stock of Shiny stem cells. Once off the prednisone entirely, I can expect some changes; it is more likely, however, that I will continue to live with this at least until I taper off of the tacrolimus, which, barring serious GVHD, will be finished by October fifteenth (so at least I'll be able to enjoy a tasty beverage for my birthday). I'm a little nervous, though, because winter traditionally messes with my dermis in a profound manner, and post transplant, my skin is even more sensitive to changes in temperature and humidity (because I needed that).
Ah well. It's nothing I haven't dealt with before, it's simply more poignant because I had a few months of healthy-looking skin, and you get used to feeling healthy right the hell away.
Laugh, and the world laughs with you. Laugh hysterically, for no reason, and they'll leave you alone.
August 16th, 2013
I'm writing this with actual pen and paper from the backseat of Mom and Dad's car as we drive along i90 from Seattle to Spokane. At least, I think we're headed for Spokane; a lot of directions and places have been mentioned, and to be honest, I've been somewhat distracted by the prospect of actually being home, and also by Mom's stream of consciousness observations regarding the countryside. In all fairness, i90 from Seattle to Spokane is, at least thus far, properly picturesque, abounding with mountains and trees and such (it turns out that, yes, we are headed to Spokane).
Since I'll be home in a few days, I thought I'd put out a small warning: I don't look like me. I have Pred Head, and Pred Torso, Pred Legs, Pred Everything.
Aside: Pulled over to the Ernie's at Moses Lake, and it had the cleanest gas station men's room that I've ever seen. So I pooped in it. You have to understand the level of opportunity a clean men's room provides. Honestly, gas station men's rooms usually look like every person that has ever walked into them has just unzipped and proceeded to relieve themselves whilst performing jumping jacks.
Now, when I say Pred, I am referring to prednisone. Prednisone is a steroid, a glucocorticoid to be specific. It acts on many body systems and is strongly T-cell suppressive. In the medical world,. it is a short-term magic bullet for almost anything related to inflammation, auto-immunity, or the immune system in general. It has been described to me as a panacea, but to stress, in the very short term. When taken over the long term, one encounters diminishing returns coupled with a host of side effects. I was prescribed it, at a dosage of 85mg/day initially, about three months ago, in order to deal with acute GVHD, which it did, rather promptly. Then, I was simply on it for a little while to make sure that the GVHD was completely taken care of, and then I began a long, slow taper, of which I have three more days. Normally, with a short prescription of prednisone, and with a patient who is neither taking immune suppressants nor at risk of GVHD, a prednisone taper does not take months; my taper has taken two. As a result, I am resplendent with side effects: buffalo hump at the neck, a big round head with chubby cheeks, bloated, carrying a heavy spare tire, and I have back pudge. I've never had back pudge in my entire life, even when I was a fatty little thirteen-year old, I didn't have back pudge. Further, when taken in the long term, prednisone causes significant muscle wasting. My legs, which had become rather toned and fit from daily minimums of six to seven kilometres of walking and the regular taking of six flights' worth of stairs, are now squishy. My shoulders are nonexistent. It is well sad.
The upshot of all of this is that this is a profoundly temporary condition. Once I stop taking the prednisone the effects will rapidly diminish, most being gone after a couple of weeks. The full recovery will take longer, probably two months, but I can help it along with diet and exercise.
There is more to discuss, but that is going to wait until tomorrow.
August 17th, 2013
Let us get into the "more".
There are two things I would like to discuss, the first being that after three separate bouts of chemotherapy, my hairline and overall follicular density have taken substantial casualties. I've always assumed that there would be an economic recession on the top of my dome, but I thought that I had perhaps ten or twenty years to get properly used to idea, as it progressed in a gradual manner. Perhaps it would have proceeded in a slow enough fashion that I could have deluded myself into thinking that any combover has ever looked good on anyone. This would be sort of like how, after spending too much time in the engineering building on campus, I might, after refraining from shaving for several days, take a look at the results in the mirror and think to myself, about a beard, "...maybe?"
Seriously, my bald and balding brethren, everyone knows when you have a combover, and we all want to say something. Well, if I'm going to have several square centimetres of extra forehead and a sparsity of keratin filaments above said forehead's expanding horizon, then I get to tell other baldies who have opted for the combover the bald truth:
It looks terrible.
Get a haircut, shave it, buzz it close, I don't care, as long as you do something, anything other than a combover (or a toupee, while we're on the topic).
Wow, that was satisfying.
Moving onto the second thing, which is a much bigger deal. My skin has resumed bugging out at the slightest provocation, and while it is not yet as serious as it used to be, it's making efforts in that direction, which I find troubling, because it's from cancer. It's my old lymphoma, still poking around. I went into the transplants expecting this afterwards, because proper graft versus lymphoma effect can take up to two years to fully resolve the preexisting condition, and the indolent form of mycosis fungoides is driven by a vanishingly small number of T-cells, which are not affected by chemotherapy. These T-cells have remained local and have had time to proliferate during the time of prednisone and tacrolimus, both of which are indeed T-cell suppressive, which, you would think, would also be suppressing the T-cells causing the skin effects. What actually happens is that because these drugs are systemic in effect, what they are mostly doing is inhibiting the T-cells my body is making from the stock of Shiny stem cells. Once off the prednisone entirely, I can expect some changes; it is more likely, however, that I will continue to live with this at least until I taper off of the tacrolimus, which, barring serious GVHD, will be finished by October fifteenth (so at least I'll be able to enjoy a tasty beverage for my birthday). I'm a little nervous, though, because winter traditionally messes with my dermis in a profound manner, and post transplant, my skin is even more sensitive to changes in temperature and humidity (because I needed that).
Ah well. It's nothing I haven't dealt with before, it's simply more poignant because I had a few months of healthy-looking skin, and you get used to feeling healthy right the hell away.
Laugh, and the world laughs with you. Laugh hysterically, for no reason, and they'll leave you alone.
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