When you try your best but you don't succeed.

In my last post, I ended by saying that I would explain my treatment plan in this next post. Well, the way I originally understood things, I would be in the hospital for a total of two weeks on what's called a 7+3 treatment, which is used for AML patients. It basically means that you have one chemo drug (cytarabine) for seven days and another drug (antracycline antibiotic/idarubicin) for three days. This would be a total of ten days, and they would keep me for the remainder to make sure that the drug was effective and to monitor any side effects. I'm not sure if I was delusional at the time or if things just weren't explained clearly, but this was most certainly not the case when it came to my treatment. Or perhaps it was my complications which led to this being an inaccuracy. I had been looking forward to seeing my boyfriend, who was coming over to visit for a few weeks from England. I kept telling him and myself that I would be out in a few weeks, that this treatment plan would work and I would be in complete remission, that this had a 90%+ success rate, that I would be okay, that we would be able to snuggle up on the futon next to the Christmas tree very, very soon and everything would be fine.

But they weren't fine, and when the second bone marrow pull came back that I had APML, not AML, my treatment plan changed, and I was told that I would be in the hospital for at least a month. Still, I told myself that everything would be okay and that I should trust my doctors. As per requirements, the doctors had to tell me all of the possible side effects of this new treatment (arsenic/ATRA). The best part was that I wouldn't have to lose my beautiful purple locks of hair, and only 2% of people developed a heart murmur.

Here's a great pic of how
my hair likes to misbehave.

Everyone seemed incredibly optimistic about the plan, which brought me a lot of hope. The only problem was, I started getting weaker and weaker, and a few days later, we found out that I had developed a heart murmur (which I could feel through my PICC, as I am extremely sensitive), and I was immediately transferred to the Cardiac Intensive Care Unit and hooked up to a heart monitor for 24/7 monitoring. After that, things get incredibly foggy, and so I beg you to bear with me as I try to piece things together.

This past month has been a rollercoaster of ups and downs, emotionally, physically, mentally. Almost everything in my life has been stressful. First, we have the issue of my medical records. I have about a month and a half missing from my memory, with bits and pieces floating around, memories that I can't place or confirm without outside assistance. I've been reading through my mum's notes, but a lot of times, there are abbreviations or just blood results written down which, while helpful, don't provide me with a complete, informative picture of what happened. So, I decided to tackle the paperwork needed to retrieve my medical records from the hospital. I mailed off the paperwork, and a few weeks later, I received a letter requesting payment for my records. For my entire stay at the hospital, my records would have cost me $473.40 for a total of 6,739 pages, a testament to how extensive my stay was and how many tests and procedures had to be done. Since I don't have the money for that, I've opted not to follow through with the request, though I've asked my doctors to look into it for me.

Second, I've been feeling incredibly guilty about my work (or more like lack thereof). I have an amazing job, which I've been doing for over two years now. All of that had to go on hold when I was in the hospital. My company paid me for a few months while I was in the hospital, which was overwhelming, and that's part of the reason why I try to push myself so hard to get work done. But with my PTSD (brought on by the trauma of the hospital stay), my depression, my crises of existence, and other such strains of emotional turmoil, I often have a hard time getting focused on the tasks at hand. This drives me crazy because I always feel so guilty, despite my doctor telling me that I needed to let my body rest when it needed to do so.

Add to that my ever-growing list of things to do. I have a conference abstract that I'm trying to flesh out, an introduction to a book that I'm supposed to be collaborating on, planning for a bachelorette party the weekend before I leave for England, and then, a huge project in itself, working on everything I need to do for my departure to England. I have to apply for a visa, work out finances, and just hope that my dreams will come true. I think that's the hardest part of having cancer right now - my life got put on hold, and I'd like to get back to where I was but there are so many things that seem to be standing in my way.

And with that being said, I must sign off for the night. I've been mulling over this post for the last two hours, and I don't feel like adding anything more to it right now. And that's what I've come to expect - some days are better than others, and sometimes, I just have to remind myself to listen to my body and rest when I need to. Four months after coming home, I still have to be kind to myself and learn my new limits. I've been told that for every one day I spent in the hospital, I should expect it to take three days for me to recover. Well, when you factor in that in... I've got a long way to go.