Rick's 20th update

Hello everyone,
I know it’s been a while since I have been in touch with all of you. I apologize for that. There have been a lot of adjustments that I have been going through regarding my recovery from the stem cell transplant. The recovery from the chemo left my brain scrambled for a while which made it hard to concentrate. I couldn’t read more than a paragraph of anything without being distracted. Needless to say it was hard to focus on writing much. When the chemo effects finally wore off, the meds that they have me on keep me shaky and sometimes loopy so this made it difficult as well. But you have all been in my thoughts and I hope all is well with everyone.
We have now been out of the hospital and living in the apartment next to the hospital for the last 5 or 6 weeks. Obviously I love the apartment much better. It is such a great healing environment. The doctors have been slowly lowering my medication and keeping close tabs on my progression. All of the doctors are very pleased with my results so far. I am now at 100% graph meaning the new immune system has taken over and there is little to no trace of my old immune system. I have very little graph vs. host disease, only a slight rash on my arms and back which has lightened up significantly over the past few weeks. This means that the new immune system is beginning to accept my body as its own. There is absolutely no blast cell or traceable cancer cells in my body because the new immune system has killed them all off. I found out all of these results after a 30 day out bone marrow biopsy that I had a couple weeks ago. This was excellent news.
When we first moved into the apartment it was a strange comfortable sensation. I was still going through a lot of the symptoms from the chemo therapy yet I was no longer in a controlled environment. Everything was up to us to handle. The only food that I could taste and stomach was oatmeal and raisins. The first night that we arrived at the apartment Tracy and Melisa were helping me get organized and comfortable in my new surroundings. I was sitting on the couch while Tracy was feeding me my evening regiment of 10 or so pills along with my nightly diner of oatmeal and raisins. Melisa was in the kitchen making herself something to drink when all of the sudden I had the uncontrollable urge to vomit. It was so violent and surprising that there was no time for warning so all I could do was try my best to keep it in one area near where I was sitting on the couch. I remember looking up at one point and seeing Melisa literally running back and forth in the kitchen almost as if she were doing wind sprints for a basket ball team and she was yelling “what can I do? What can I do?” This image actually made me smile through the pain and nastiness. Then I looked down to see Tracy cupping her hands together as vomit was filling her hands and spilling over on to the carpet. This vision in turn forced my stomach into another set of convulsions and more vomit. She meant well and I love her with all of my heart but cupping my vomit as it came out might have been a little overkill on her part. But after it was all over I couldn’t help but laugh hysterically about the whole incident. We all got a good laugh after the fact.
As the days and weeks progressed eventually the daily vomit routine subsided and went away along with many of the other symptoms of the chemo therapy and we settled into a daily life of taking many medications and going to many doctors appointments. Each doctor’s appointment seemed to yield more and more good news. I have a port line in my chest that runs directly to my heart to pump medicine, chemo and blood as needed. The hospital sent out a nurse to teach Tracy how to keep the lines clean on my port. This is not as easy as it sounds because she has to be very careful to keep the area clean and inject the correct amount of “flush” and Heparin, a medicine that keeps the lines open, into the lines each night. I am very proud of how well she has done with all of this. She now does this as well if not better than some of the nurses that have preformed this procedure on me in the hospital. She has become my regular and favorite nurse! She is on time with everything and encourages me to stay active and rest when I need it. I truly don’t know what I would do without her. We get calls on a daily basis from the hospital telling Tracy to up this medication or lower that medication and she stays on top of all of it keeping my blood counts right where they need to be at all times. The nurses are always complementing us on how clean and well kept we keep my port. Words cannot describe how proud I am of her.
We have been getting a lot of visitors which helps the time go by and is a very warm surprise given the distance we are from everyone. My daughter Lily has come out a few times and on one energetic day that I was feeling great we actually videotaped my daughter and I doing silly dances to the song “You’re the One for Me Fatty” we laughed until we were crying in the living room.
Melisa has been such a blessing. She comes up on her days off, every Wednesday and Thursday and brings relaxation and fun to our little home here in Tampa. She is truly a good person and a great friend and caregiver. Tracy taught her how to clean my port lines the other night. She said it was intense, but she did a great job. She always encourages me to go out walking around this little pond located at the back of our apartment and sometimes we feed the ducks. It’s really quite pleasant.
Most of the down time out here is spent watching absolutely horrible T.V. I have never been a big T.V. watcher until I came out here and I am constantly reminded why I don’t watch T.V. Part of the reason it is so bad is because we only get basic cable in the apartment. However now that my concentration and memory are starting to come back I have started reading books more so this helps pass the time as well.
We have a busy weekend coming up with family and friends scheduled so that should be fun. I hope this letter finds each and every one of you in good health and good spirits. I think about all of you all the time and I enjoy hearing from all of you. Thank you for your continued love and support through all of this!


Sincerely,
Rick

Well, I thought since I have a few minutes in this early hour of restless sleep that I would give a quick update. It seems that a lot of this is wait and see. So far since I have been out of the hospital, I have have not had as much trouble with this as I thought I would. I don't delusion myself into thinking that there is not more to come as I'm sure there is more to come. This, like I've said before is a long process of the unknown. The doctors and nurses don't even fully know what to expect.

I know that I have and 8 out of 10 match, one of the matches is such a low miss match that they don't even look at it as important. Most of my side effects so far have been from the side effects from the drugs. But it is nothing that I can't handle for now. I know better than anyone though how quickly this could turn ugly so I bide my time and do everything they tell me to the best of my ability.

I still maintain that finding the lighter side of things and laughing about something every day helps the over all process. I hope this letter finds you and your families well and I just want you to know that I promise more to come with more interesting subjects regarding the process as time develops and I get to the point of feeling well enough to write more.

Thank you all for your continued support. This has been a hard process but one battle at a time one day at a time and one day I will be able to start my new life all over again with great new possibilities and a very strong happy future with my family friends and loved ones.

Thanks,

Rick