Saturday, July 31, 2010
Contrary to popular belief I am not dead...
There are a few things you must know when you start a blog that has something to do with a life threatening illness....if you go more than a week, possibly two without posting you will get emails from people asking if you are still amongst the living! I am happy to report that while I have been tired and weak as hell, I am still very much alive.
It seems though that I underestimated just exactly how taxing this cancer thing was going to be. I was doing so well following my first round of consolidation therapy in early June that when I started to go downhill in terms of needed repeated blood and platelet transfusions and having extreme bouts of fatigue I realized I may have to readjust my thinking on the matter. I sleep....A LOT! I've always been a fan of sleeping, napping, lounging...being lazied in the bed for hours at a time. When it's a choice your making like a recreational sleeper it seems great...well at least it did to me. But when the circumstances change and it becomes something your are doing constantly, because...well, because you can't muster the energy to do anything else...it becomes more than a bit irritating and nerve wracking. At times I think I'm going to go stark raving mad if I spend another minute in this bed. But then I become exhausted and fall into almost a coma like sleep and I'm relieved from having to worry about it until the next time.
So what have I been up to since my last post? I'm sure that is at least someone out there that cares. Just kidding. I know there are two of your. Anyways, I went for my second round of consolidation therapy (fancy terms for chemo treatment) on July 9th and ended up being in the hospital for 9 days as opposed to scheduled 6. I developed a bacterial infection and was having side effects from the chemotherapy.
After the first bag of chemo was hung and running I began to have severe headaches. The pain was excruciating. It wasn't like a migraine but it hurt something awful. I hadn't had that in the past with my chemo and they were extremely concerned because they worry about the chemo drugs going to your brain and causing neurological damage. I'm pretty sure I came into this cancer diagnosis short a few screws up in my brain so adding to that would be pretty shitty. They ran multiple test to check and see how my brain responded to different stimuli and concluded for now at least that it was most likely just headaches and not the chemo.
I swear my body doesn't want to do anything the easy way and just to prove this I ended up having an adverse reaction to not one but two separate platelet transfusions. Ummmm.....yeah, for those of you that don't know a leukemia patient that cannot stand to get blood, platelet or other blood related products transfused without adverse reactions is called one thing....dead! The whole basis of this disease is eliminating the leukemia cells in your blood stream and replacing them with healthy cells. If you can't get blood, platelets or blood products...you will die!
So after the first adverse reaction I was a little shaken. After the second one I was mentally making out a will and thinking who would get what. I don't have a lot to dole out mind you so those thoughts only occupied about 3 minutes of 30 minute ordeal to get me feeling and breathing back to normal.
Once it was determined by my team of doctors that I could be released and sent home I had somehow managed to hit an even lower point of fatigue and exhaustion. My mom had left with Hannah in tow and so I had no one at home to care for me. I honestly didn't think I would get to the point that I couldn't care for myself on a day to day basis but there I was faced with it when a few days after being out of the hospital I had made my way to the bathroom to pee and found myself about to black out on my bathroom floor. I managed to lower myself to the tiled floor and lay my head down on the balled up bathroom rug and Penny curled up next to me. I must have laid there for a good 20 minutes before feeling well enough to crawl, on my hands and knees, back to my bed. By the time I got back up in my bed and lifted Penny up, I plunked my head down on a pillow and slept as if I had just hiked trails on a mountain all day.
I didn't say anything to Jon when he got home about my near fainting spell. I didn't want him weighed down with anything else stressful. However, a few days after that incident I actually passed out in the bathroom and hit my side and was down for a good 10 minutes at least. I had to tell him and then began planning on how fast we could get my mother back out here to stay.
Jon's mom was handling all my clinic appointments and Olivia was home during the day in between things that she was participating in so we were able to stretch it out until this very weekend. I had my weekly appointment at the hospital yesterday to have my blood counts checked and ended up getting 2 units of red blood cells and 1 unit of platelets and NO adverse reactions to either. I was lucky enough to be able to do the transfusions out patient and after an entire day (from 8a to 6p) spent in a chair hooked to an IV I was pronounced good to go home.
So this morning Jon left with Olivia to make the 8 1/2 hour drive to my parents home in Georgia to retrieve our other daughter Hannah and my mother. Since I go from feeling semi lucid and have a tiny bit of energy to being full out ready to faint at a moments notice Jon's mom was given the task of being my sitter.
Before getting cancer my opinion of my mother-in-law was that she was nice enough, loved her son, was good to our girls and I appreciated that she didn't meddle in our lives like I've heard some mother-in-laws can and have done to couples I know. However, from the day that I was handed this diagnosis she was the first person that I saw after being transferred from SMH to Tulane without seeing Jon because I made him promise he would stay with our kids and go to work like nothing was changing in our life. He reluctantly followed my orders but sent his mom to be with me. From that moment on she has been a constant in my treatment and we've formed this relationship that I should have formed with her years ago. We talk and laugh and I see so much of Jon in her that it makes me wonder why I never put forth the effort in the past.
Tonight as I lay in my bed writing she is asleep on the sofa just in case I will need anything or if something should go wrong and I need to be taken to the hospital. Before being diagnosed with cancer I would have the worst time sleeping if Jon wasn't in the bed or if he wasn't in the house. There will be no problem with that this evening. I don't know the reason I was struck with cancer, nor do I care too much as long as I come out the other side with my life. Sometimes I think that this diagnosis was a way of forcing me to stop and realize the importance of the little things in your life and the people around you that will truly go to the ends of the earth to provide for and care for you.
I've spent many years in a dark hole of depression wishing for some sign of what this life of mine is all about. In the last 3 months now since my diagnosis its as if everything has snapped into focus. I pray every day that I can hold on and fight so that I can fully enjoy the people and things around me unlike how I had pushed them aside for the past few years due to depression.
Exhaustion is taking hold again, so I'm stopping for now......but I'll be back again soon.