Anyone who knows me has probably heard me talk about my views on having an AML recurrence. Generally speaking, I’ve felt that it wasn’t a question of if it was going to happen, but when. Like most people, I seek information on my disease and unfortunately never got the ‘good’ news I was looking for. The survival rates just plain suck. It’s because of those rates that I had a ‘when I relapse’ attitude. I didn’t, nor do I dwell on it, I just take it for what it is, a damaged vehicle. I know my body isn’t going to make it for the LONG haul. It’s this mindset that keeps me active, it keeps me ‘young’ if you will. I plan on beating the crap out of this body and getting ALL that I possibly can out of it. I want to do all that I possibly can; I want to experience and feel everything. I choose not to crawl up into my fear bubble.. of course, that’s easier to say now that I’m 4 years out…

I attend my local leukemia and lymphoma society support group and have for a few years. Support groups are interesting. It is indeed valuable to be able to regularly talk to people about cancer and not only have them not be sick of hearing it, but can relate to it. I treasure the ‘support’ I get but it’s bittersweet. The price I pay is watching some people very close to me and my situation pass away. There are some in active treatment, some who’ve been in remission for a long time (such as myself), some who get sick again, newly diagnosed and sadly, some who are very close to the end. Through the years that I’ve attended, I’ve always been the youngest and aside from one other (who has since passed) the only AML (or leukemia for that matter) survivor. Many times I have commented on wishing to meet an AML survivor who is 10 or more years out. One who was not diagnosed as a child nor one who is geriatric as both these scenarios are different than my own. We had a nurse this week and I posed the question to her “Do you know of many (or any) leukemia survivors who are 10+ years out?” (I get mixed reactions when I mention this) Her thought is that there are long term survivors out there but they have made it past the trauma of their treatment and don’t wish to look back. . She wracked her brain but could only think of one or two that fit the bill. She also works more in treatment than after care so she wouldn’t have exposure.. ok, excuse granted..

I took all this with me this morning to my 6 month check up. Yesterday I had my blood drawn and while I feel good and was sure all was fine, I still couldn’t help be a little worried. I still was anxious to see my numbers when the Dr came in the room. I’m fine. In fact I was going to ask to move to 1yr visits but we agreed to meet again in 6 months and then move to the yearly schedule. I also took advantage of my time with the Dr and asked some pressing questions that have been on my mind. I asked him if he had many leukemia survivors who are 10 or more years out and he, without hesitation, said oh yes. This excited me and I dared press on.. I asked, “a lot?”, He hesitated and said well, there aren’t many cases such as yours to begin with but yes, and he paused to think, there about 10 in his mind that he cares for over the years. He then said that typically he only gets 1-3 cases like mine a year and while there are a bunch that don’t make it, there are also some who do. He stressed again that if I’ve made it this far, it’s likely that nothing is going to happen. He even dared to say the word “cure” but he looked uncomfortable doing so. He’s said this last part to me before and I still don’t hold much stock in it as he also admitted in the same conversation that we still have no idea what actually causes leukemia but, I still took comfort from today’s visit.

I’m fine

Some First Descents news: I’m signed up this year to kayak in Idaho in August. A couple of my FD friends also said they were doing the Idaho camp so I’m excited for that. I’m also very excited to meet some new FD friends. This is such a worthwhile cause; it makes so much difference in a life, in many lives. It’s amazing. Nuff said for now.. more to come..