No one knows how long it has been there. It is possible that it was there even last summer when they treated me for my AML (Acute myeloid leukemia) which the doctors had considered to be cured after two rounds of heavy chemo and a stem cell transplant. I knew the odds of getting it back was about 30-40% and even though all my blood and bone marrow tests have been looking great ever since I got back home at the end of September of 2017, it is now definitely back and the question is whether it was ever really gone in the first place.
My doctors said that two persons per one million gets a tumor in their heart. Not quite sure if that only applies to AML induced heart tumors, but it is extremely rare nonetheless. The chief medical officer of stem cell transplants at the major hospital here at Karolinska, Huddinge in Sweden has during his 35 years NEVER seen AML growing tumors in the heart. I guess this makes me quite unique in a not so positive way. When I google it, it says that (according autopsy studies) 0.02% get heart tumors, however 75% of them are benign. So I am unique in that sense too that I qualify in the 25% slot for malign tumors.
They cannot give me a prognosis, only hope that it is plausible to get rid of it. The tumor cannot be surgically removed as it has grown into the muscle tissue of the heart. The only way is to try and shrink it with chemo and then use radiation (if my heart is strong enough to endure radiation after the chemo). They are currently giving me chemo in tablet form two times per day, in combination with intravenous chemo one hour per day. My heart was affected by the chemo already last year and thus, they do not want to give me any stronger doses than what I am getting at the moment. However, the doctors have let me know that it is a very potent combination of chemo, even though it is a lot milder. At least I get to keep my hair this time. Although I would happily loose it again as long as I survive this.
I know people around the world experience horrible things every day, way worse than getting a bad cancer diagnose, and even though I at times feel that is “unfair”, I can for the most part, accept what has happened. But I do understand people who go through similar things who don’t want to try to be positive or who cannot accept it. Everyone deals with hardships in different ways and it must be ok. This is not to say that I don’t get mad, ask myself why this has happened or that I don’t cry for hours scared of what will happen to me and especially what will happen to the people I might leave behind. These are important thoughts though and I need to cope with my death anxiety, otherwise there is no way I’ll be able to get up in the morning. In a way, it “helps” that this is the second time around and I have been through this already, however the odds are less positive this time and death feels closer than ever before. It doesn’t mean that I have given up hope or that I do not wish that all will be well. But let’s be honest. We are all going to die. Some day or another, there is no escape. Some die young, some die old. There is no rhyme or reason to it and in that sense, I am not unique. I am just as everyone else.