Tuesday, December 30, 2008

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.

Friday, December 5, 2008

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.

Tuesday, October 28, 2008


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.

Wednesday, September 3, 2008

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.

Tuesday, August 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.

Friday, August 22, 2008


Well, I was set free from the hospital yesterday around 2:30pm... Yeah!! Too much time in the hospital will drive you NUTS! But before I could even celebrate my release I was back in :(

I checked back in the hospital today around 10:00 am (not even 24 hours outside the hospital walls) The reason: I have been doing very well, better than expected :) and the current attending physcian is new to this type of regime so his best judgement was to release me. There are many benefits to staying outside the hospital. But my normal physcian (who was out of town the last few days) found out about my release and had a cow... He's very worried about me not being well protected from infection and also if I do contract an infection it is treated quicker and more easily when I'm in the hospital. Therefore I'm back in the hospital and the same room.

Wednesday, August 20, 2008


The last few days have gone very well. I have been very forunate experiencing only minimal nausea and the ocasional headache. The days have been going by very slowly and I've been pretty bored which is a good thing. Boring days in the hospital are good, for sure. I have been doing so good that I may be able to leave the hospital early. The doctor has made the decision to switch all I.V. medicine to pill form and see how I feel the next day or so. If these next few days go well I'll be able to go to the Hope Lodge.

The Hope Lodge is a facility downtown (K.C.) that is owned by the American Cancer Society. This facility is used by cancer patients in order to stay close to the hospital. I must be within 30-45 minutes of the hospital at all times for approximately 100 days after transplant. Since we live slightly outside of that then I must stay at the Hope Lodge. This would not be the first time I stayed at the lodge, I stayed there during my last transplant. The facility is very nice and clean but you must have a 24 hour caregiver which in my case will be a combination of my mom, dad and Korey.

Wednesday, August 13, 2008


Although the transplant went as planned it was not as I imagined. It was very intense from the beginning of the day. I was very nervous all day in anticipation of the transplant. All I could think about was the last tranplant and how I felt before, during and after. Needless to say, this was not a pleasant feeling. Once the time came to start the infusion I was a nervous wreck but I had a good group of support there for help. At the start of the infusion I felt ok but soon after my body began to chill beyond control and I was trembling even after four to five blankets were added to my body. After the infusion I had a severe headache which felt like my eyes were going to pop out at anytime and my body ached like I had been running for days.

I feel better today but I am very tired and have little energy. I feel optimistic for the next ten days. It takes approximately seven to ten days to ingraft.

Monday, August 11, 2008


Things went well today... I got my last dose of ATG and I am getting all prepped up for receiving my sister's cells tomorrow. The doctors and nurses are anticipating that it will go well.

My sister will come in early and have a "pick" line put in place in order to harvest her stem cells. The line will be placed in her neck (jugular vein) to insure that there is adequate amount of fluid flowing through the line to run the machine. This prevents collapsing the vessels as well. The pick line should be a triple lumen; one for removing blood, one for returning blood after the removal of the stem cells and lastly one for fluids or any type of IV assistants. Her stem cells will be counted and then given directly to me through an IV bag. They will estimate the number cells to be injected and several infusions may be needed to reach a safe level.

Thanks for all the prayers and support.

Sunday, August 10, 2008


Today and yesterday evening was pretty rough. I'll begin with last light.

Last night no matter what I ate it didn't settle well on my stomach which started the afternoon badly. I received another dose of the ATG and that just sent my system off. I woke up on and off feeling very sick and running back and forth to the bathroom mostly due to the increased fluids. But eventually I let my food lose, then again, and again. But I felt much better afterwords, as you could imagine. This to say the least, led to the morning. The next day I was very tired and drowsy for the most of the morning. As the day progressed I began to feel much better. I changed my eating a little (more liquids less solids) and I believe that this resulted in my deceased nausea. Needless to say I've had a rough couple of days and look forward to having a few days of ease (if possible). I still plan on receiving my sister's stem cells on Tuesday.

Saturday, August 9, 2008


The day started off good and ended less graciously. I received chemotherapy and also an agent named ATG. ATG (Anti-Thymocyte Globulin) is a serum derived from genetically modified rabbits as an immunosuppressive drug. I believe it's designed to eliminate my T cells so when my sister's stem cells are injected in my body my T cells will not attack the injected T cells. This may help reduce the high chances of a condition known as Graft vs. Host disease. Graft vs. Host disease is where the graft (my sister) has a healthy immune system and it's injected in the Host (me) with a weakened immune system due to chemotherapy. In some cases the graft will identify the host as a foreign object and attack organ tissues. Tissues like liver, kidneys, and skin are more commonly effected. Graft vs. Host can be chronic or acute. Chronic meaning effects over 100 days from transplant date and acute meaning from transplant until 100 days from transplant. Anyways, I received some of this unusual stuff yesterday and it was not pretty.

The dosage was to be administer over 6 hours to minimize the number of effects at a time. But I slowly began to heat up and i got the chills. Very similar to a bad flu. Then even hotter and a excruciating headache and full body aches and my lower to mid back felt like a truck was parked on it. I had a significant amount of nausea and actually threw up a few times. Parts of my body had small uncontrollable twitching that went away later. Also later on I felt like really sore like I have run for miles. I receive ATG for four consecutive day and each day is supposed to have less effects.

Thursday, August 7, 2008

Here we go...

The first day at the hospital went well. Korey stayed with me my first night and it was very nice seeing her face in the morning. I had a trifusion line placed which will be used to administer chemotherapy and to receive the donated stem cells. The end of the line lies exterior of the skin with three tips (lumens) which could be used simultaneously. This line up and over my ribs then connects to a major artery in my chest. I also received the first of six rounds of chemotherapy which I had little effects other than a little chest pain and nausea.

I will receive chemotherapy everyday for six days then they'll give me a day off. Next, I will receive my sister's generously donated stem cells. Unlike the stem cells in the media all the time, these cells are not embryonic stem cells. These are what doctor's call peripheral stem cells which can be found in the blood stream of everyone. These cells are capable of turning into red blood cells, white blood cells or platelets. Their purpose will be to migrate to my bones and recreate bone marrow after the chemo has wiped out the pre-existing bone marrow. An alleogenic transplant does not rely on the chemotherapy to fight the cancer. This type of transplant relies on the T cells (cancer fighting cells) of the donor to fight the cancer. Very interesting stuff. It's amazing what the human body can tolerate and what the field of medicine has been able to accomplish.

On another note, I get to stay in one of the nicest hospital rooms I've ever been in. There's a very nice view of tree tops and a few buildings for as far as you can see. It's very clean and quiet. You can't ask for much more. So far so good. Thanks for the prayers and support.

Saturday, August 2, 2008

BMT number Dos

Well it's official I start my second bone marrow transplant on Wednesday (August 6, 2008). It's what physicians call an Alleogeneic Stem Cell Transplant... a fancy name for receiving stem cells from a donor which will be my wonderfully short sister... I mean my wonderful but short sister :) I've had great help and support through everything and at this point I'm no longer fighting for myself, I'm now fighting for you. I realize now the overwhelming power of positive attitudes and prayer. There's more people who want me to get through this then I would've ever imagined. So I've created this blog as a means of keeping you informed. This is my attempt to bring awareness about how important prayers and support are as well as how this can happen to anyone. Feel free to make comments and subscribe to this feed.

FYI: Please disregard spelling and grammatical errors, sorry :)

Wednesday, July 2, 2008

A little background... Yeah

If you haven't already heard my life has been rather interesting in the last few years. It all started with itchy feet and it was all down hill from there. It continued with a seemingly endless number of doctor's appointments that proved unsuccessful. Many doctor's miss diagnosed my symptoms as anxiety, depression, stress and many other things. I was eventually diagnosed with Hodgkin's Lymphoma approximately 1 year and 3 months after my first doctor's appointment showing symptoms. I have undergone six months of chemotherapy, an additional two months of high dose chemotherapy and an Autologous Stem Cell transplant (September 2007). Blah, blah, blah, can I get "my life is rough" for a thousand Alex. JK. It's been a little crazy with a lot of ups and downs but overall I can't complain. In other words, it hasn't been an easy last few years but I've been content but stressed. I have gone through what some people would say is a lot but I've had great support from family and friends. I couldn't have done any of this without my mom, dad or friends.