I'm a Barbie Girl, In A Barbie World

I spend a lot time at the doctors office /clinic now. I have blood drawn once to twice a week to see if I need more blood (perhaps if they would QUIT taking it out of my body, I wouldn't need so many transfusions!). This makes me wish for futuristic times where they could perhaps scan a vein and pick up properties of my blood without having to remove it from my body. But, since that is not yet a reality, I continue to get drained weekly.

This week I am going back into the hospital to have a port put in. This will give doctors direct access to blood without having to find a good vein in one of my arms or feet. They simply aim for a half-dollar sized area on my right upper chest and can get blood there. They can also give blood or IVs the same way. This will be so much less painfull and take a lot less time, not to mention the lowered risk of infection.  I had a port a few months ago, but they were concerned it had been compromised and was itself infected, so they removed it. This was well before my final diagnosis of Aplastic Anemia (which always makes me think of a Barbie doll when I hear it....don't know why-maybe because of that stupid Barbie girl song by aqua.  Imagine the re-write:  "She 's Aplastic, not fantastic")

Today marks a special day on my calendar-I went to the gym for the first time since getting diagnosed and out of the hospital. So....since April. I tried to jog the 4 blocks there and made it one. Then I rode the bike for 20 minutes and tried jogging home - made it 1/2 block. But I did go and I did work out...sorta. When I got home, I had to nap. Too tired for much else. I am guessing my hemoglobin is low, so perhaps I will go get my blood tested tomorrow. Just thinking about all that is involved in that makes me tired!

So I have received an interim solution...or stop-gap that should at the least get me to bone marrow transplantation.  They gave me a series of drugs the refer to as ATGAM which is derived from horses and in some cases even puts the recipient into remission. I am guessing I am not so lucky based on how I feel today, but we will know more after my next blood count. That is one of the worst parts of this disease... Having to wait for weekly numbers to tell you if you are doing ok or if you are headed for transplant very soon. It doesn't sound bad, but the internal turmoil is sickening all by itself!

I am now the mom who doesn't go to other kids games or practices.  I am too tired to go to the pool with them. I cannot cook dinner or even manage to go out to eat. I am constantly battling severe nausea, exhaustion, and chronic pain in my back, legs, all bones really. I am pretty good at laying around and watching movies or watching the boys plays video games, but my current state of existing is not anything to be proud of or to wish for. I would much prefer the bone arrow transplant so that I can be part of my life instead of just an observer.