One year post transplant

Hello all,

My one year tests results we not awesome but not terrifying either. A combination of my PET scan, CT scan, and bone marrow byopsy suggest that I may not be out of the woods just yet. I had some mild activity show up on my PET scan and my bone marrow dropped 1% from my sister's cells. So, apparently I'm still battling this very unwanted pest they call cancer. We will begin by undergoing a DLI - Donor Lymphocyte Infusion which will hopefully put me back in remission. This procedure includes getting three doses of my sisiters lymphocytes intervenously over a three to four month period.

Thanks for all the thoughts and prayers.

Back to a life...

I've finally got back to a life that is seemingly normal, as if my life was ever really normal. Anyway, I have been working for Clay County, Missouri as a GIS technician for a approximately two and a half months. It's a desk job so is very different from what I'm used to. Everything health related has been going very smoothly, a few minor set backs but overall I'm very grateful. I was deemed "in remission" about two months ago and have been loving every minute of it. My one year post transplant will be coming up in August 2009. Although I'm very excited about it I'm also very nervous. Published information reports that the first two years contain the highest rate of relapse for lymphomas. So, the one year mark will be highly anticipated. Not to mention I had relapsed slightly under one year after my first transplant.

Also, I'm currently slowly working on my thesis and plan on returning to school to finish my masters soon. I hope all is well with everyone and thank you for all your prayers and support. They have been much needed and greatly recognized.

One day at a time...

Everything has been going pretty well lately only I've been really bored. It's been hard to get motivation to get any work done on my thesis. I guess you can say I'm in a sort of idle mode which isn't good for the ol' morale but I'm making it. Also the last few days I've been sick. I got some antibiotics and some OTC stuff so hopefully it will subside quickly. Overall, things are still on track and I'm chug'n along. Thanks for all the thoughts and prayers. Merry Christmas and Happy Holidays, God Bless.

Welcome Home...

I completed my 100 day tests a few days before thanksgiving and the results were good overall. The 100 day tests consist of a PET can, CT scan, bone biopsy and a bone marrow biopsy. The biopsies are done with local anesthetic on the lower back just above your butt. Don't let the mention of local anesthetic trick you, this is a very painful process. Most of the pain and discomfort comes from the penetration of the bone. There is a sensitive layer inside the bone that cannot be numbed so you just have to tough it out for a few seconds while this area is penetrated and the marrow is sucked out with a large syringe. Furthermore, the bone biopsy is a larger needle use to extract a cylindrical piece of bone about 1/2 inch long and about 3mm wide. The bone extraction causes more discomfort than pain. There's a lot of pressure and abrupt sharp pinches.

The CT scan is just your normal everyday CT. It includes drinking some disgusting fruit flavored barium mixture for about an hour then go lay in a tube for 30 mins. Also while laying in the tube they inject you with contrast. Pretty easy if you ask me. These things are meant to help identify your digestive system and your circulatory system. Next is the PET scan, this is where they inject you with a radioactive glucose that will concentrate in highly active areas. The basis of this is that cancer cells are respiring much faster than normal cells hence tumors form. So the cancerous cells will consume more glucose and show up on a PET scan as a very bright yellow-greenish color. This is also done within a CT tube. An important note following a PET scan; you're consider radioactive for approximately four hours after the scan so you must remain at least ten feet from small children and pregnant woman. This is to protect young developing minds from developing abnormally. Scary stuff. PET scans are a very useful tool in staging, identifying, and detecting cancer and are a necessary part in the future of early identification of cancer but we need to be responsible and protect each other from these harsh side effects.

So, now I've been out of the Hope Lodge for a few weeks now and I'm enjoying life, as much as I can. I'm unable to do a lot still due to my suppressed immune system but I'm much happier to have somewhat of a control of my day to day schedule. The reports from my tests were good -as they should be- and I'm looking forward to my next scan in just a few months to see if the transplant is progressing. As of now my bone marrow consists of 99.6% my sisters blood and my blood counts are remaining stable. The docs say in 180 days post transplant I will be able to do much more as long as things go well. Thanks for your prayers and support.

Update...

Sorry for the lack of posts I didn't realize how many people actually relied on this for updated information.

I've been spending virtually all my time at the hope lodge in kansas city. It's been fun for the most part but the down time wears on you. I've been doing pretty good, there's been a few minor complications but overall I can't complain. I'm currently at day 77, I believe, and have less than a month left to stay at the hope lodge if everything goes well (fingers crossed). I've been spending most of my time resting and working on various activities around the lodge but nothing really "fun". I look forward to getting out and slowly getting back to my "real" life. The docs say I will be unable to go back to school for 180 days so I'm not sure what I'm going to do in the mean time. I have some things to work on but nothing that's too exciting.

More technical information...
My blood counts have almost reached normal levels although my true infection fighting cells are lacking and my ability to fight viruses and "bad" infections are low. I do have a defense against some bacterial and other infections. I still have to be extremely careful what I do and who I'm around. Also, at day 60 the doctors ran a test known as the chimerase (spelling?) to see if my transplant was successful. A chimera is a mythical two headed beast so this term is used to identify biological specimens that have genes from two or more zygotes (i think). Anyways, my transplant cells were from my sister so they tested for the X and Y chromosomes. It turns out that 98% of my blood was my sister's (cool). So the transplant has been extremely sucessful to this point. Another cool fact is the my blood type has actually changed to my sisters. I went from A+ to A-. Although it was just the rH factor, it's still amazing.

Lastly, thanks for all the prayers and support I'm extremely grateful for all my friends and family.

Lots of news...

Well, the hair is gone. It was falling out in sort of a reverse bozo the clown look so it had to go. My night nurse came in at like 11:00pm and suggested shaving my hair and before I new it I was in a chair covered in towels and half of my hair was gone. So that was quickly settled. There are still a few random hairs left and some areas are cut but still look similar to crop circles. I can't really blame the nurses, they went to nursing school not beautician school.

Also some good news, I was released from the hospital on 9-1-2008 (opening day of dove season). Although it will be a long time before I get to do any hunting, it is nice just being away from the hospital. I'm back at the Hope Lodge and yesterday I spent most of the day doing "rehab". Nick and I played rockband for about 5 hours!! Of course I played the drums and I have never been so tired in all my life but don't tell my mom because I'm not supposed to get worn out. Shhhh, she'll never know. I think it'll be a while before I do 5 hours of rockband again, at least 5 hours of drums.

I wanted to add an FYI... Everyone knows a cancer patient goes through a lot. Physical and mental stresses related to trying to get better and worrying about getting proper, safe care. This by itself is very stressful and can consume your mind but there are many other things that add to your mental stress. I in no way feel sorry for myself or pity myself but I want to let people know what is possible in their life. During a very involved and demanding procedure like a bone marrow transplant your life is temporally postponed. You can't work but you have overwhelming bills to pay, you can't go to school, you fight to keep relationships intact, you worry about adverse side effects of chemotherapy, you think about getting your old life back and many other things are running through your mind. As if the physical strain is not enough there are lots of mental stresses that can be overwhelming. There are many support groups and organizations that help with these types of things but nothing is better than a good support group of family and friends. I try to stay positive all the time and keep telling jokes but sometimes you just can't and I need to just feel bad for a little while.

8-26-2008

It's official, I'm losing my hair...

Three or so days ago my hair began to trickle out, a hair here and a hair there. But the last two days it has begun to pour out with a vengeance. I estimate that I have lost approximately 80% of my hair in the last two days. I was not too excited about this to say the least. Among the list of chemotherapy side effects which hair loss was not one of them was excessive facial hair growth. Ha, in other words for the ladies out there, you may lose your hair but you might in turn have excessive facial hair growth (with this same type of treatment). Weird.

This is not the first time my hair has fallen out due to chemotherapy so I'm not worried about it but people tend to look at you differently. When your hair falls out people give you a sympathy look and feel sorry for you becuase you look very sick. You get the ocassional comment about it and that's the last thing you want to think of at the time. Last time I expected my hair to fall out but not this time and it is a pretty big shocker.

I don't mean to scare anybody (esspecially the woman) out there about losing your hair. It does not always happen, it depends on the precribed chemotherapy regime.