I received a call ( well three calls actually) from my hematologist /oncologist wanting to see me. In person. Tomorrow. This has never happened before and I have to admit that I am scared. The calls came right after my last blood work came back. And, they did a lot of different cancer seeking blood work this time. At first I thought maybe she was going to move forward with the bone morrow transplant, but then she ordered a CT scan of my lungs too...the waiting is too much. I'm sleepless and worried.
I am being switched from the evil skunky cyclosporin to Prograf for treatment of my aplastic anemia. This is a great thing for many reasons (no more throwing up every day, and so much less of the stinky drugs), however it appears that I am going to lose my damn hair AGAIN.
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.
I have been diagnosed with Aplastic Anemia. This is possibly secondary to Lupus, or unrelated, but it is real and it sucks. It seems as though I have been sick forever, but apparently it has only been 8 years, since the boys were born. I guess my immune system crapped out after making two perfect, tiny humans. Totally worth it as I watch them play basketball, dance to a song, listen to them sing with the iPod in the car. Worth it, but completely unfair.
I don't know if you have read back from 2007, but I was on a vent for a short time - insignificant compared to this, and one of my greatest fears...ever having to be on a vent again. I had even put in my living will that I wouldn't go back on a vent. Ever. But when my chances of living are 0-10% without breathing assistance, and much more promising with....you give pause. You give pause and you begin to wonder what will happen to those perfectly wonderful 8 year old boys. You worry about leaving your husband to do everything. You cannot fathom never kissing him again, holding his hand, watching a storm blow in together. You cannot begin to think about missing your daughters lives...everything so finite. And no idea if there is an afterlife.
I am not a religious person. I have struggled for years with what I believe, but I am certain enough of anything to put bets on what happens when we die. So unless I know I know that I can see my family, watch them, feel them in some way, and still bring them strength and assistance of some kind when they need it most-I am not dying if I have any choice.
This is what I thought as the critical care doctor was explaining my options of vent vs no vent. I looked at Todd and through blurry, crying eyes, I remember saying I couldn't give up...that I couldn't turn down the vent...I was too scared to die and wanted to whatever needed to stay alive. And that...was that. I spent 10 days on the vent. It was a completely different yet equally horrible experience as in 2007.
I spent over 50 days in the hospital. Which, by today's standards is a lot. When I came off of the vent and was awake, I had no strength, no muscle tone, no ability to do anything for myself. I had a few weeks where I slowly improved and was transferred out of ICU, and then I hit a wall, or relapsed, or something not so great. I lost my ability to roll over, to get out of bed, to make it to the restroom or bedside commode. I was wearing adult pull-ups and even changing out of those took more energy than I had.
I remember losing crazy amounts of calories. There were times when I would wake up for vital signs, eat something /anything as quickly as possible before falling asleep or freezing out of the covers, and then would be asleep as quickly as I had woken. Then there were other times when I wasn't allowed to sleep for days. Nurses would be in every 20-30 minutes due to transfusions or other high-touch medicine, and I simply could not get a moment to sleep. Those nights would lead into long days of crying, headaches, and generalized shitty days. Luckily there were not too many of the really bad days. There were a lot of long, boring uneventful days, and those days filled much of time in the hospital.
Apparently I am pretty confident in my memory...to the point where I don't think I need to write anything down these days.
There are birds in the courtyard, some in cages, some wondering on the grass. It is sunny and cool. There is a small Italian cafe on the corner- so out of place, and yet so memorable. This small part of town is an oasis in a dirty, filth- ridden city.
Apparently the age of 5 is one where kids love to push the sanity buttons of those in charge of them. My boys have it down to a science, which is odd considering they still cannot manage button-up jeans. And yet they are the ninjas of driving me crazy.