I am enjoying being at home in Houston. I was a little tired yesterday, but I managed to do several activities throughout the day. I thought I could tackle the laundry late in the afternoon, but ran low on energy as the clothes were coming out of the dryer. Christa came to rescue me and helped to hang and fold the clothes and bring them back to the trailer. I am enjoying the “Fall” weather in Houston, but my allergies have been acting up. I came to realize that all of the allergy shots I have taken have been wiped clean from my immune system. This means that it may be rough until the transplant. After the transplant my allergies may change according to what the allergies the donor might have. This is a whole new world for me. In fact I am slowly discovering that anything that I considered normal two months ago is not normal anymore.
Leukemia and the battle to defeat it is a difficult struggle, but what many people don’t realize is that the treatment doesn’t leave you exactly the same. The most difficult issue is that I have always been a very independent person and now I am completely dependent upon Christa. I had a small wound on my lower leg this morning and I was not able to care for it. I have been so overloaded with fluids that my feet are like balloons at times and it makes it difficult to walk. After getting out of the hospital this week I took off ten pounds of fluid in two days. I still probably have three to five more to go, but it is much better. I found it interesting that my feet were not good indicators for the doctors about how much fluid I had retained during my hospital stay. Since I have lost over a 100 pounds there is a lot of room in the extra skin around my stomach that can hold extra fluid. Even with the extra fluid around my middle I am still down one pants size since this journey began. My left eye has been bothering me since my stay in the hospital and after I got out my nose began to run and my eye got worse because of allergies. Christa pointed out that I self-diagnose my problems, and I used to be able to do that because I knew my body. I don’t know my body anymore, it seems as if everything has changed.
I read a post on Facebook today that talked about how cancer affects families as well as the patient. I can see how this is true in my own family. I have a son who is spending his senior year without parents at home. My wife has been uprooted and is working full-time and trying to care for me full-time, I can see the exhaustion and frustration in her, but yet she still carries on. As the patient my body is physically changing, but also my lifestyle is completely impacted by this hideous disease. I can no longer just run to a store to get something without donning gloves and a mask and hoping I have the stamina to make it through the whole shopping experience. I have numbness in my fingertips that may never go away this impacts almost everything I do throughout the day. I am fortunate that I have very little side-effects from each round of chemo when so many do not have that experience. Most of all the glue and bond that is holding our family together through this crisis is our faith in Christ Jesus. “I can do all things through Christ Jesus who strengthens me” is something we cling to during this struggle.
Cancer has changed my life in another way. I always gave to the Cancer Society and have purchased notecards and notepads from the Children's Art Project at M.D. Anderson faithfully, but in the end I look back and I could have done so much more. I always found excuses not to give blood throughout my life, mainly because I didn’t like needles. That was a huge mistake, the most important impact I could have made to help a cancer patient would have been to give blood. The blood that is donated allows them to retain life and fight the disease. I will never be able to give blood now, but I would like to encourage others to do so. I dream of putting together a blood drive that will give back for what has been given to me. I don’t really know what God has in store for me once this journey is complete, but I do know one thing I am a changed person, both physically and spiritually.
A favorite song of mine is “God on the Mountain” following is a portion of the lyrics:
Life is easy
When your up on the mountain
And you’ve got peace of mind
Like you’ve never known
But then thing change
And your down in the valley
Don’t lose faith for your never alone
For the God on the mountain
Is still God in the valley
When things go wrong
He’ll make them right and
The God of the good times
Is still God in the bad times
The God of the day
Is still God in the night.
I love the last line so many times we forget that in darkness God still reigns.
God was truly with me when I went back for my transfusions (it was going to be 8 hours). I got the chemo that I had previously reacted with as well as platelets, blood and a lumbar puncture. The chemo was a surprise to me since I thought it was next week. The true blessing was that I slept through the entire event, because of the drugs they gave me. Even ate lunch and don’t recall anything except that I woke up with a whole glass of tea in my bed. Christa later told me that she put my tray across the room and I had eaten so much that I shouldn’t eat a cookie. She left the room for a second and caught me in the cookie jar, out of bed and acting innocent. I don’t recall this at all. She said I provided many laughs for the medical staff who were attending me.
We left the hospital close to eight at night and ran by Walgreens to pickup prescriptions and then it was back to the trailer for dinner and some rest. Although there was no spectacular miraculous event yesterday, God was still there and really in a big way. The lumbar punctures always make me so nervous since it involves the spinal cord. God made sure I didn’t have to remember the experience this time. I am not certain, but I think it may be the last one I have to endure. The transplant team may require it, but God can take care of that in the future, for the God of the night is most certainly the God in the Day!