Looky what I got today..... - Page 7

Flamethrower · 09-26-2006, 07:00 AM

Ok guys I am still here. I just wanted to say thanks again for all of the cool well wishes and everything you guys have posted. It has helped a lot.

Well, today is day 63 post transplant. I have been actually home at my own house for a couple of weeks. I will tell you what. It feels great to be in my own home. Of course I am home on the condition that if something takes a turn for the worse I will have to move back to my sisters house to be closer to the hospital. So far I am not to concerned about that. My sister and brother in law were great. Almost to great. They almost seemed to want to wait on me hand and foot, that kind of drove me nuts. I like doing things for myself when I am able.

Well I am going to clinic still 3 times a week to get checked on. They do blood work each time and make sure all of my blood counts are good. Which at this point they are all normal except for my white count which is elevated due to the steroids I am on. It turns out that I have a graft VS host disease that has affected my skin, which made it rashy on my upper torso. They put me on high dose steroids and steroid cream about 18 days ago to try and combat the problem. The GVHD did not react as fast as they wantedt it to so last week they started me on a new process called photopheresis. What they do is remove about a pint of my blood sepearate the red cells, the white cells, and the plasma. The red cells are given right back to me, while the white/T-cells are mixed with a light activated chemical. A high intensity light activates the drug allowing it to bond to the T-cells. It is them mixed with the plasma as a carrier and then given back to me. The theroy is that the drug marks the T-cells for termination. My body then gently destroys those cells which are the ones that are causing the GVHD. These are cells that being overly agressive and attacking to much, because they are not trained for my body. They feel the photo process will work well with me. If it does not, then off to plan c.

They have finally started to taper my steroids this week. Unfortunately it will take about 6-8 weeks just to get me off of them. Let me tell you guys, steroids suck. The roids have terrible side effects. Roid rage is not just a myth, but now I am on something to control that which is working great. Also I am now diabetic because of the roids. It will go away after I am off the roids which is good. I am checking my blood sugar 4 times a day, and so far I have not had to take any insulin. I watch my diet and execise every day which is working. Not to mention the the roids make me hot all the time. I can just be reading a book and I will start sweating on my book. Always being hungy, insomnia, muscle and bone deterioration, water retention, all go hand in hand with roids. I will be happy to get off of them.

My days are pretty full with just taking care of me. I still have to give myself IV magnesium and potassium for 2-1/2 hours twice a day. Plus a handful of pills 4 times a day. I'm also have to make sure I eat enough and keep up my energy. I heve been drinking water like a fish. About 5 liters a day. Need to stay hydrated and keep the kidneys flushed. Working on trying to get my dressing to stay on my hickman catheter is always a treat. Applying creams and powders twice a day. I stink most of the time because my doc won't let me wear deoderant because it was reacting with my skin. I now have this natural deoderant stone that I got from GNC. I tried it on one pit last night. I worked out this morning and it does not smell as bad as the other. I guess it is working and it does not seem to irritate my skin. I still sweat it just doesn't smell as bad.

Meanwhile through all of this I have been trying to keep myself busy at home. I've been organizing my house and doing all of those things I have been meaning to do for the last 2 years. I've got lots of time on my hands right now, so I might as well do it. It's coming along, slowly but thats ok. Once it's all done then what will I do?

Well that's it for now. Back to my chores. Have fun guys.

Never give up! Never surrender!
Flame

honda1 · 09-26-2006, 07:33 AM

Good luck man, just keep high spirits.

Ebonclaw · 09-26-2006, 01:16 PM

Your spirits are about to get a lot higher real soon Flame. Promise.

No_DAMN_NAMES · 09-26-2006, 02:47 PM

RAWWWRR STEROIDS.

Oh, the other kind.

And as far as smelling goes, shave the pits dude. Sure it isn't manly, but it also limits the area the smell making bacteria has to smell up. It works, and if it makes you feel like a girly man for doing it, I do too so you can rag on me for it.

Minkus962 · 09-26-2006, 03:58 PM

Quote:

Originally Posted by No_DAMN_NAMES

RAWWWRR STEROIDS.

Oh, the other kind.

And as far as smelling goes, shave the pits dude. Sure it isn't manly, but it also limits the area the smell making bacteria has to smell up. It works, and if it makes you feel like a girly man for doing it, I do too so you can rag on me for it.

Canadians are weird... (But right)

for you flame.

middie002 · 09-26-2006, 04:59 PM

It's honestly really great to hear the good progress. Keep it up.

CollegeBoy · 10-01-2006, 11:01 PM

Quote:

Originally Posted by Flamethrower

Which at this point they are all normal except for my white count which is elevated due to the steroids I am on.

Never give up! Never surrender!
Flame

Just remember, if you present career falls through, you can always play baseball.

Serious man, it is good to hear you are doing well.

kwcbomb · 10-03-2006, 10:24 AM

good luck from all of us at lucas vally we are all praying for u. and thx for your advice on what to putt on my new ion. hope u do grait.

Goldeneye7 · 10-17-2006, 09:54 AM

Praying for you man!!!!!!!

Keep up the good work.

And don't stop paintballing, lol.

NO, have a nice rest.

Praying for ya dude.

crimson thunder · 10-18-2006, 11:57 AM

good luck mate

sonix shooter · 10-19-2006, 05:56 AM

i only wish my dad was a stongh as you. he dosent even whant the treatments for his colin cancer.

you ar a inspiration for all of us.
keep fighting and never give up

fake ninja · 10-24-2006, 09:37 PM

so flame, how are you holding up, its been a month since the last update, we hope your doing good.

Flamethrower · 10-25-2006, 08:20 AM

I will have an update tomorrow. Stay tuned.....

Flamethrower · 10-27-2006, 05:18 AM

Day 94

Today I figured I would get on and give you all an update from the clinic. Right now I have a machine hooked up to me and it is drawing my blood out. This is the photopheresis part of my treatment. Some high tech stuff here. I thank God that there are very smart people in this world that can do the research and think this stuff up and make it a reality.

Well things are going pretty good. I was getting a bit nervous last week with my blood counts. My plateletts took a significant drop. From about 175,000 to a low of 77,000 in about 4 days. Certainly not the lowest they have ever been, but when counts start going down it puts doubts in your mind about how well the transplant is holding up. All of my other counts were doing fine. As of right now my plateletts seem to be on thier way back up, and the others are up and holding. I get another bone marrow biopsy done next week, so that should be good at confirming that things are going the way they should be. Along with that I have another pulminary function test, to check my lungs and stuff.

My doc has been reducing my steroid level pretty much weekly at this point. I started at 75mg twice a day and now I am at 40mg in the morn and 10mg at night. Some of the common side effects are going away, but I am still diabetic and checking my blood sugar 3 times a day. the diabetes is getting better as the roids get lower. Now however the roids are causing muscle deterioration in my legs. Even being on the treadmill for an hour a day isn't helping much. I have started leg press on the bowflex, which seems to be helping. The trouble I have is with stairs walking up hills. My legs get fatigued quickly, then I have a hard time standing up.

Two weeks ago I got and immun system booster, and a bone enhancing agent. The roids can give you weak bones and they can break easier. I just do what they tell me to do. They are the experts, and I have to trust what they tell me.

well anyway, things seem to be more on an even keel at this point. The GVHD is somewhat stable with the roid reduction and the photo, so that is good. I have been eating well and been getting a little more active. Now I am Suzy home maker and I keep the house clean, do laundry and make dinner for my wife most of the time. I have been able to do a little shooting which has helped make things feel a little more normal. I am suppose to be going to a machinegun shoot this weekend, but it's 2 hours away and I don't know if I feel up to it right now.

Oh, yeah I got hair back. Woot! Seems kind of strange. I have not had hair in months. Now the hair on my head is growing in half light brown and half gray. It is very fine and straight and an arrow. Normally my hair is dark brown and a little wavy when it gets longer.

Well when I am not going to clinic 2-3 times a week still I stay at home and organize my house and play on the old computer, when it's not driving me crazy with the NV4_disp.dll BSOD. That is another story.

Things are going and pretty well I am alive I feel good, the road is just a long one.

That's about it for now. I am sitting here still connected just waiting for the hot PA to come down and put another stitch in my central line to keep it in place better. Her name is Jamie, she is a bit sedistic, but wow if she isn't good looking.

Flame

Never give up! Never surrender!

trophyman582 · 10-27-2006, 01:10 PM

Good to hear you're doing better.

Flamethrower · 11-09-2006, 12:12 PM

Day 107

Another update. A short one for now.

I had my 100 day bone marrow biopsy last Thursday. I got the results today.

The sample looked healty and there were no cancer cells. I am still in remission, and now my marrow is 100% donor cells. Or as they lovingly put it. "I am all girl" So woot woot! (for the 100% donor cells)

Yup I have male an female chromosomes now and I have 2 DNA's. Kind of weird when you think about it. The wonders of medicine.

With that a big........

Never give up! Never surrender!

Flame

DagNasty · 11-09-2006, 12:20 PM

Quote:

Originally Posted by Flamethrower

With that a big........

Never give up! Never surrender!

Flame

you are an inspiration to us all.

lotus_esprit5 · 11-09-2006, 12:26 PM

hell yeah flame! great to hear. maybe you and ebon can go shopping sometime and get your nails done so you can get in touch with your new feminine side

keep it up man, it sounds like things are improving.

cancer treatment is hell regardless of the type, whenever I hear about all the stuff ppl go through (and in the cases that I have seen personally) it is amazing that ppl stay strong through the whole ordeal.

Rugrat · 11-09-2006, 02:23 PM

Right on Brother!!

Jckdarippr · 11-10-2006, 02:47 PM

Glad to hear you're getting better, but being a computer nerd myself, the NV4_disp.dll means that somethings off with your graphics driver...specifically a NVidia Geforce video card, so if you download the latest drivers that might help, if it still persists, check to see if your card's fan is malfunctioned or overheating. Hope your recovery continues.