Day 101 One Hundred days have come and gone. Just over three months ago I was laying in a hospital bed with chemicals running through my veins, curing, or poisoning me as well the remaining Leukemia inside. The last hundred days have definitely not been all fun and games, but they haven't been the worst either. Immediately after transplant was the hardest, I was left feeling very weak, and having a body that I did not really recognize. My ability to taste had been reduced significantly, my body was not used to food and I had a little trouble in the digestion area. Also the lack of communication, I kind of cut of ties to the outside world for a while, as I didn't feel well enough to express myself to others. It has been a long few months, and it seems like I could have accomplished more in the (to me) pathetic existence I have endured here, not doing much. More importantly though, during my "uselessness" one thing for sure has come forth, I have overcome one obstacle presented to me in November of 2004, Leukemia, even now it seems very peculiar and strange to say that I have Leukemia, or did rather. It's like an out of body experience, although you experience all the horrible effects, the vomiting, headaches, diarrhea, mouth sores, and all the rest of the torture that comes along, it still seems unreal.
Now for immune building, that is really the only thing holding me back now. Having an immune system is great but only if it works properly. In my case I am still taking drugs that inhibit the growth or maturity of my new disease fighting system. The prednisone steroid that I am taking is slowly being tapered, and I cannot just stop taking it because of some adverse effects that can become of that. For instance, I could become psychotic from the withdrawal, and start flinging chairs and be very irritable for the slightest reason (I have discussed rage issues with another transplant patient.) The main reason I am on this drug is to prevent Graft vs. Host disease, where the new immune system could start attacking my body:(Right now I think I am experiencing a little bit of this in my mouth, it is feeling a bit peely and has a different texture- I have a steroid mouth rinse for this, and no it won't give me built tongue muscles.) Another reason for the tapering is that if I were to experience harsher GVH symptoms it is likely I would have to go back to a higher dose again and begin the tapering process all over again. Right now I am at 30 mg per day, if I keep moving along eliminating 5 mg per week, with a final dose of 2.5 mg, it is likely I will be off the "roids" in about seven weeks. Maybe this will mark the increase of an fighter and better protection inside me.
The cold, or whatever this thing is, is still with me. The chest feels fine, I just have to cough every once in a while to loosen up the crap, it isn't really a colour anymore, maybe a tinge of yellow, but not as it was before. My sinuses still get a little plugged up at times, but nothing a few forceful blows can't clear up. The only other thing is that my head has been bothering me. You know the feeling when you feel like you are on the edge of a headache, but it doesn't bother you enough to pop a Tylenol. We'll see where it goes.
I went for a jog tonight, the mosquitoes were crazy. After all the rain it seems that it was enough to spark some serious hatching in the mosquito egg department...Dude. I didn't get eaten alive, I was able to outrun them for the most part. The jogging felt good, I haven't done any(as much as tonight) for a long time, and you can tell...You can feel the burn in your legs, the firming of your butt, the bouncing of the fat in your upper torso... What a rush. I have been thinking fairly serious lately about joining the Team in Training program if I am able. It is a training program that gets you trained for a marathon of your choice, mine being Honolulu in December, and you have to fundraise so much, 75% of your money raised going towards research for Leukemia and other blood disorders, the other 25% going towards your training and getting to the marathon. This would be a tremendous challenge, but also put me back inline, maybe even better shape that what I was before all this happened. I feel this would be such a good cause and a very positive thing if I am able to do it, which I really hope I am.
I am still a bit sick, it hasn't really amounted to much, some congestion in my chest, I am bringing up a little crap when I get coughing, and I am more stuffy and nasally. Other than that I am fairly fine in the cold department. I had a sins X-ray today to make sure nothing's up there.
Saturday was a bit of a drag, it rained most of the day, so I stayed inside and didn't really do much. Sunday was an improvement, it was a lot nicer. We went for a bike ride around the very muddy reservoir. We actually went through a few blockades, the paths were supposed to be blocked off, in some places the water was flowing over the them, nothing raging, but enough to be a public hazard I guess. I got my feet wet on the bike crossing through one overpassing stream. The rest of the weekend was fairly relaxing. The city was put on water restrictions because of the muddying of the reservoir, so this week we have been trying to do our best with conserving water, short showers and such.
Todays doctor appointment was rather long, we were there until 4:00. Waiting for my blood results was one of the delays, as well as waiting for the sinus X-ray. So I read my book in the waiting room until things happened. My blood results were good. I think my platelets are on the rebound now, they climbed six points to 66. I was able to get my Central Catheter taken out, a process I was worried about, but it turned out to be not so bad. The pokes of the needle hurt the most, and it only tok a few tugs to get the line out from my chest. I laid there on the bed for fifteen minutes while the doctor preformed the "surgery", and another fifteen with a weight on my chest to help prevent bleeding. The side of my chest feels a little weird right now, but it should be fine, as long as I am not bleeding internally... Don't worry, arteries have muscular walls, so it should have closed right up after the line was yanked.
LeukemiaBeGone...Positive Negative Results of a Bone Marrow Biopsy
Disease free. To have no sign of Leukemia left within my bone, a very good sign of a nightmare slowly fading away into the past. Those were the results of my Bone Marrow Biopsy from last Wednesday. To tell the truth I wasn't really worried, it was looking fairly positive, but no doubt to have confirmation is really reassuring. Really I have probably been Leukemia free since I was zapped with radiation and the half a dozen chemical that were pumped through me before transplant, but now that my marrow cells have had a chance to grow again the test was conducted to tell for sure. So a weight has been lifted off my weaklink shoulders and those of everyone who has been thinking about me.
However, the effects of transplant have really been more of the issue, of course Leukemia is the reason I am in this mess. Because I have a new immune system growing inside me the caution I have to exercise will still keep me under strict conformity. Public outing bans, no swimming pools, crowd avoidance, construction zone clearance, staying away from most animals, out of the dirt, ect... So limits to what I can do will still be in effect for a while, without an immune system of total functioning capabilities I am still at high risk for infections that to a normal person could easily shake. Unfortunately, leukemia gone or not, I am not there yet. It may be six months, it could be a few years before my immunity is substantiated enough to sustain my body and health against all the bugs out there, I'll get there eventually, sooner rather than later.
My blood results for Wednesday proved to be a little concerning. My liver function was a little high and I was told to return to do a follow up blood test today to see what was up. Wednesday my platelets had surprisingly stopped at 57, the same level as last week(maybe the end of a slow dip.) It was proved so as the level was at 60 today, so maybe things are looking up in that regard. I need all the platelets I can get if I continue to get nose bleeds like that of the one on Wednesday morning. It bled for a half an hour and led me to become a little light headed, fairly certain to happen with a nose bleed that long. My hemoglobin slipped a little too, but was up a point today. Luckily my liver function was down to a more suitable level, if it were to be up it may have caused my medications to be changed or something, so we remain the same.
Unfortunately this week I think I have managed to get sick. A cold of some sort. I have developed a cough over the past few days, with a little congestion in my chest, and a bit of a snotty nose. Hopefully nothing more serious erupts from it, but without strong immune fighters in me, it may take a while to get over. Lets hope for the best. I'll shake this in no time. Really, I think I have been very lucky to last this long without catching something, living with six other people, two of which are my cousins going to school, exposed to hundreds of other germ infested snotty nosed kids playing in dirt. I have been careful and washed my hands millions of times, but I guess some thing are just unavoidable. Lets just say it's the first test for my new blood, and not to say I am equipped with a few antibiotics to help me along.
It's raining, and supposed to for the whole weekend which sucks cause I'll be cramped up inside and won't be able to get out for my physical activity, maybe yoga inside... Maybe I'll try writing a song on my guitar as I watch Calgary float away.
The stab in the hip went well. Although while performing the operation, in my anxiousness, tight grip on the bed frame and heavy sweating, I swear the doctor gave out some evil laughs. Not so much as evil, but 'you're not going anywhere' laughs. It was painful, but nothing a few slow, deep breaths couldn't solve, if I wasn't to pass out. The worst part is right when he sticks the fairly large biopsy needle and has to put lots of pressure on it to get through the bone. Because of the pain I couldn't really tell if it made noise, or just the quivering inside my bones that made the sound that vibrates through your body. Anyway, hopefully that will be my last bone marrow biopsy, and all that I am left with is a small scab where the needle went in, oh and of course the centimeter of hip that is now in a test tube somewhere, but that hole will fill in in a little over a month.
I should have my results by Wednesday when I head back to the Bone Marrow Clinic. Apparently we could be looking at line removal. My central catheter has been attached to me since January. It has been a long time. I was told that the procedure is something to the effect of a lawn mower being started without the recoil, I guess that would be the burning sensation afterward. First I am given local anesthetic where the anchor is located, just below the collar bone. They need to make an incision here because essentially my skin will have grown around this anchor. Once they have the anchor detached the tube will be in two pieces. The one inside me (leading to a main artery) will be pulled, fast to minimize bleeding, the other should just slip out. All I should be left with are a couple of stitches, and maybe a little tenderness, but I am planning on it not being quite as bad as when it was put in.
So the weather in Calgary has been a little depressing, not that it is depressing me, but rain... It has been raining a lot here and it has prevented me from getting outside and doing my physical activities as much as I would like and should. So I am getting fat. I swear my breasts have enlarged a bit, and since I have been able to job slightly, they are more sensitive to the bouncing movement. To much information I know, but that's a warning to stay active and not have extra baggage, or to wear a sports bra.Since my hair is growing everywhere again I am also experiencing itchiness, and is that annoying as well, but soon I'll just be hairy again and itchiness will stop?
From my last doctor visit the stats hadn't changed much, but my hemoglobin was down still at 122 (137 normal) and platelets had dropped slightly to 57. I guess white blood cells went down too, but they remain in normal range: 6.2. With these results, it should tell if anything is happening that shouldn't, but these dips seem to be normal while engraftment takes place. So we will see Wednesday.
Ok, so I have new information. I was thinking that after the 100 day mark, which is June 26 I would get my bone marrow biopsy, which will show the status of the new marrow in my bones. Guess what... It will be next Wednesday; the twelfth week post transplant. I was a little surprised. Realistically though, being sooner, it shows I am in pretty good shape I guess, and I will know something more concrete a little sooner. The good news I hope! They asked if I wanted sedation...Nah, I am tough. I have done this what... Four times already without it, so why wimp out now. They still use the localization freezing (I'm not that tough!)
I think going to the hospital wears me out more than going for an hour long walk or bike ride. Sitting there must be the brain drain because I feel really tired after sitting there waiting for the doctor check-up, and he is always late, or my blood results don't get there for a while. But it's not like I have a lot of other thing to do, and it's only once a week. So it's bearable. My stats are doing ok. My platelets are still lower than they should be at 59, and my hemoglobin went below "normal level" this we too 125 (it should be above 136) but these are just numbers. White blood cells were at 5.6. I was put on a daily folic acid pill, it is too help with blood formation, so maybe that will increase my blood making.
I took a nap at 6 yesterday, odd time for a nap, and slept 'til 7:30, I guess I needed it. But I haven't been staying asleep at night the best so I use what I can get. Right now I feel like passing out(falling asleep...So don't worry) I haven't done much today except for bake a cake and cookies... I drove to the store to get my prescription(shhh.... I am not supposed to drive with the prednisone, but I don't really find I have have the side effects that ward off driving...Just don't tell the doctor!) Then I came back, had some lunch... Iced the cake....Been on the comp ever since. I really need to practice guitar today still too. After my nap!
