As I came into the hospital for this 3rd round of consolidation chemo, I had prepared myself for a 3 week stay. Well, 3 weeks came yesterday….so that means we are headed into week 4. I do have to say that because I prepped myself, I have been okay with being in the hospital so far. Many times as I get closer to the end of my stay, I get filled with lots of anxiety of just wanting to get out. It can start to feel like a prison and once they give me the okay to be discharged I can’t get out of here fast enough. I don’t want them to change their minds! There are obvious reasons why its a good idea to stay in here – case in point, the last bleed in my brain. Thankfully I was here so they were able to catch it right away. I have also been transfused with platelets almost every day I’ve been here.
I am at an interesting point. I MAY be done with chemo treatment. My treatment plan (and we know that always changes…) was to have 3 to 4 rounds of consolidation chemo. There is research that shows that 3 rounds is more effective than 2, but 4 rounds is not necessarily better than 3. But, their feeling is that if a patient can handle 4 rounds, then they might as well do it to make sure the leukemia doesn’t come back. However, in my case, I have gotten brain bleeds with every round of chemo but one. So, the question becomes, do I put my body through a 4th round of chemo, when it might not be necessary, and it might cause me to have another bleed. I also will have another bone marrow biopsy in about a week (they schedule it 30 days after the start of chemo). The results of that will also play into our decision of whether to have a 4th round.
So, if I am done with treatment after this round and decide to not have a 4th round of chemo, the question becomes, “What now?” I have read many other cancer patient blogs and talked with cancer survivors and this is a big transition that is somewhat overlooked. For the past 6 months, my life has been CANCER. It has been my treatment, doctors, nurses, the hospital, bone marrow biopsies, getting platelets, what are my numbers today….nothing that reflects a normal life in the real world. Now, I will be going back to normal life and to be honest, it feels really weird. I kind of don’t know what to do with myself!
I also want to be able to view myself as a cancer survivor, but I don’t get that clearance for a long time. Even after finishing up treatment, I will continue to see my oncologist for follow up visits every 3 months, then 6 months for up to 2 years. I believe that if you stay blast-free for 2 years, then they consider you in remission and that you’ve beaten leukemia! That is a long time to sit and wait. Looking over my shoulder to see if the leukemia will reappear. Or wondering if that bruise on my leg is just a bruise or if it means my platelets are low? Or if that headache is just because the kids have been crazy all day or if it means I’ve had another bleed? I anticipate that it will take a big adjustment for me during this time.
The great part about being done with treatment? I get to be home!!! I get to live normal life again, even though it may not have been the normal that it was before, it will become the new normal. Like today, Ava (my 1st grader) gave a kick-butt speech to her class today about why she should be their class president. My husband recorded it for me (thank you technology!) but I SO wish I could’ve been there in person to see it. She was so proud of herself and she should be! I look at all that she has had to deal with in the past 6 months and she is so resiliant. She is doing great in school, thriving beyond imagination and soon to be Room 44 Class President. (Who else has that to put on their resume?)
On a side note, one of my partners in crime, Ilene (walking buddy) is headed back here to Camp Summerlin tonight. Not that its great that we get put back in the hospital but I’m really excited to see her. It will help to pass these remaining days I am here a bit faster. The best part is that she likes to play rummy. That has been my new favorite passtime. Our nanny, Hailey, comes to the hospital during the week and we play. Let me tell you, the games get pretty heated! I think we are tied right now in the games we have won.
Well, that was a mish-mosh of a post. Just an update on what’s going on.