There is a little secret they don’t tell you about Acute Leukemia, it is unlike all other forms of Cancer. I would never downplay or wish to have any other form of Cancer, but Acute Leukemia can be one nasty partner. This post is not intended to be a rant so hopefully it doesn’t sound like that ;). It is just my attempt to shed some light into life living with Acute Leukemia.
One of the most difficult things about Acute Leukemia is it is not a very common form of Cancer. Because of this, it is very hard to find stories of others going through it. To give you an idea of how hard it is, I have yet to find one story from someone in the same age group that has the same form of Leukemia as me. That’s right, not one. Why is this important you may ask? It is really helpful when you are beginning different parts of your treatment to get a little light shed onto what to expect. Since it is so hard to find leukemia stories that are close to your own, when you are trying to learn about what the different stages of your Cancer journey will be like it is from other forms of Cancer. Although these are still extremely helpful (Lance’s book was instrumental in my recovery), they are also misleading for an Acute Leukemia patient.
Acute Leukemia is a very aggressive form of Cancer, which takes extremely intensive treatments to achieve remission. Unfortunately, once you achieve remission it is not over there. In most other forms of Cancer, remission is the end of the journey and your life as a survivor begins. Acute Leukemia is different though, achieving remission isn’t enough. If you were to just stop at achieving remission, the disease would relapse within a few years. To truly begin living as a survivor an acute leukemia patient needs to undergo the extremely intense bone marrow transplant.
After you complete the transplant and are released from the hospital you would expect that your journey in survivorship would begin. This was one of the biggest surprises for me. When you get out of the transplant and your treatment is done, there isn’t the feeling of survivorship that you would expect to have. Sure you are thankful for having survived up until this point but I don’t think you have the full feeling of survivorship because you aren’t done your battle yet.
After you defeat your leukemia with the intensive chemotherapy cycles and the bone marrow transplant, you have to start fighting another battle. Your new immune system begins attacking your body. The routine required to fight this battle is much more structured and than anything during leukemia treatments. I take way more pills now than ever during my treatments and the timing is very strict. The schedule is so structured your life is literally run by your pills post transplant.
When your immune system is attacking you it can actually be fatal if not defended against. Your only defense is to suppress the immune cells that are attacking you. The downside to this is that it also makes you very susceptible to illnesses, so you almost have to continue to live in isolation even though you are out of the hospital.
For me I don’t think I will totally feel like I am entering the survivorship part of my journey until I am off the immune suppressants and can start living life a little more. As for right now I will continue to fight the fight. There isn’t too much you can do to fight this fight except try to stay positive and take your pills. It can be a tough life living in “isolation” that can wear you down mentally. But it is extremely important because others illnesses can be very dangerous to me. So I will continue to take my pills, keep away from “sickos”, and wait for the immune system to accept its new home so I can start having some more fun.
I hope this shed some light into life with Acute Leukemia. I would love to hear your thoughts.
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