I have spent a lot of my day today on and off FB and reading posts on pages related to bone marrow/stem-cell transplants. There were a few questions posted that had me thinking about my experience with my leukemia diagnosis, remission, relapse, and transplant. It made me think of the similarities I share with some and also the differences. There were posts by some that even after two years post-transplant they still have fears. There was a posting that someone stated that they haven't been feeling well and was lacking the motivation to even want to get out of bed to go to work and they really didn't understand why because they have been doing well. Later they realized that it was the anniversary of their diagnosis and that even know they put that in the past and moved on, subconsciously their mind or body hadn't forgotten. It saddens me that many still struggle with that but it also helps me not feel so alone in the post-transplant journey. Even though I'm beginning to move on, "it's" always there no matter how much I try to go on with my life. It's not even something that I obsess over or are in constant fear about. It's just a reminder that things can be going so well that we can keep living day by day and all of a sudden something occurs that brings us back to that moment in time, for me its either the initial diagnosis, relapse, or something related to the cancer experience. It's one of those whispers to let us know that, yes, we may be doing better and appear healthy but don't get too comfortable or complacent, which leads me to my two-year post-transplant appointment.
On Wednesday last week, I had my two year post-transplant appointment which also meant receiving the results of my bone marrow biopsy. I was feeling very optimistic and untouchable. Even though I had a bit of a cold, I was feeling as good as I could be and didn't have any concerns. Of course, I was experiencing the natural anxiety that comes with waiting for the results but deep down I really felt okay. My doctor's assistant came in to speak with me prior to my doctor coming in and she began to go over my biopsy results. Now this time it was very different. Usually my doctor would come in and say everything looks great, your numbers are good, tell me I'm still 100% donor cells and would perform the usual exam. During his time telling me this, he would be flipping through sheets of print outs that he would read and never offered for us to see. I, or my family, never questioned it and never asked to look at it ourselves because as long as he said everything looked good, what was the point really. Its just a paper with a bunch of numbers and percentages and names I can't even pronounce so why bother to look. However, this time, the assistant flipped through the pages and pointed things out to us. She stated that most of the numbers were in the normal range and that even some things had improved. But she also reported that some numbers were lower than normal and others that were higher than normal. Instantly, my body became tense. I straightened up and became more alert. My mind was racing and trying to pay attention to what she was saying while simultaneously trying to remember how things were when I was initially diagnosed. Because of my racing thoughts all I heard was "these white blood cells are more elevated than normal" and that's all I heard. Those words are all that I hung onto because when I was initially diagnosed it was those numbers that were so elevated that alerted the doctors to possible leukemia. So here I am sitting in this room, hearing elevated numbers. I began thinking "are you kidding me"..."this is a joke, right"..."there has to be a hidden camera or else I'm dreaming...yes, that's it I'm dreaming, right?". I began to panic, my chest got heavy, my throat started closing up on me, my eyes began to burn and I could feel the tears. I began thinking of my children, and my husband. I began thinking, "no, this can not be happening again, it's so not fair to them and it's certainly not fair to me". The assistant was taken aback by my reaction because as she was explaining the numbers and that these lows and highs are normal, I didn't hear it in my panic mode. All I heard was "elevated numbers" and I freaked. After sometime of reassurance from her and my doctor, I was able to relax a little but not entirely. It was another reminder of not becoming to complacent with how things are. That things can change in a matter of seconds. It doesn't mean that we should obsess or live in fear all the time, it's just a reminder that nothing in life is static. So its a week later and I'm experiencing small anxiety or panic attacks. From what I've read from other's who have gone through similar circumstances, it appears quite common and helps me feel less neurotic. I hope that this will lessen as time moves on as I become stronger and regain my strength. Many people have stated, in their efforts of trying to comfort, to not worry about it, etc. and its true you can't obsess over it but you can't forget either. When you yourself have experienced a traumatic event that is life-threatening, it's impossible to forget. Even though you are moving forward, "it's" always there in the back of your mind and its a reminder to embrace life and to embrace those around you.
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