Every Thanksgiving I am reminded of my Thanksgiving five years ago. And ironically, this morning while watching the TODAY Show, I was reminded again. A segment was being aired about two young children who are siblings who was diagnosed with Acute Myeloid Leukemia (AML), the same leukemia I had. Throughout the segment it was stated that this type of leukemia is especially deadly and one that is a death sentence unless you are lucky enough to have a bone marrow transplant.
Hearing those words about AML basically being a death sentence caused another emotional storm. It brought me back to my consult with my doctor after I was told of my relapse. He had stated that because of my relapse, the next option will need to be a stem-cell transplant. I had asked him if I decided against the stem-cell transplant, what would happen? He stated that my remissions would be tougher and if I was lucky to become in remission, those remissions, would become shorter and shorter, until my death. I remember sitting there thinking, oh my god my remission didn't even last a year. And if the remissions become shorter and shorter, I may not even be alive in a year. I have no choice. I don't have time to sit on it because of my type of cancer. It rapidly grows and multiplies within the blood that this decision has to be immediate and it needs to be now. That's when I decided to do it. I need to have the stem-cell transplant. Regardless of the side effects, this is the only choice I have or else, imminent death.
This leads me to where I am now today on Thanksgiving. I had to prepare my body for the transplant. I needed to receive 5 doses of highly toxic, lethal chemo to assure my body is wiped clean of the leukemia cells. It was a scary time because some people refer to this chemo regimen as 'lethal' chemo. Some people don't make it through. So as I'm receiving these highly lethal doses of chemo over a 5 day period of time, Thanksgiving fell on one of those days. I remember my husband and the kids being at the hospital, along with my mom and dad. It was around lunch time and the kids were getting hungry and one of the nurses had just walked in my room with a tray - my Thanksgiving meal or how I felt inside as what could be my 'last supper'. I told my family go ahead to the cafeteria and have their Thanksgiving meal together. I will be okay and could use the time to myself. It was one of the most loneliest times ever in my life. But it was also time I needed. I remember looking around the room and thinking this is not the place I'm going to die. This will not be the place where my family sees me last. And here I am today, blogging about my journey.
My blogging has become so therapeutic for me. More therapeutic than any counseling or therapy. I can just let it all pour out about how I'm thinking or feeling on a particular day. If you've read my past blog posts, its very apparent the emotional ups and downs I have gone through and continue to go through. I am moving on with my life but my experience and my emotions about that experience have affected me so greatly this is the only way I can cope.
So in closing, I am so tremendously grateful for every Thanksgiving. I am not in a hospital bed, alone, eating my Thanksgiving meal. I am here spending it with my family. In fact, before cancer Christmas was always my favorite holiday, but since Thanksgiving has become mine. It's very personal to me and was an enlightening experience that day 5 years ago.
I'm so thankful for today and for my donor, Andrea W. Without you I wouldn't be here. God Bless and I wish everyone a most happy, grateful and thankful day!!!
Tonight I learned another thing about myself. I thought I was comfortable in my own skin. I thought I was accepting who I am now. But what I've learned is that it's all been an illusion, more so to myself than anyone else. A few weeks ago someone had said to me that they didn't recognize me because of all the weight I gained and how big I was. It cut deep, in fact I'm still cut and bleeding from those words. I just want to stay at home behind closed doors. I feel ugly. I feel that my weight is out of my control. It's hard to get a handle on it because of my meds and side-effects from stem-cell transplant. Because of the gvhd in my lungs my lung capacity is only at 48% which limits my activity level. Sometimes a flight of stairs winds me.
I need and want to lose the weight but I feel lost. I feel stuck. Everytime I try to make an effort, I fail because of some damn limitation. Add on to that that I'm partially bald. When my hair grows in its only partially. You can see more of my scalp than hair so I just keep it shaved. Even though the cancer is gone, the rest of me still feels stuck. Still in limbo. Some may think why can't she just be happy to be alive and that those are only small issues but they really are not. They are big. Being in remission doesn't mean that everything is all better and you can go back to living life normally. I will never have the life I once had. I can strive to get as close to it as possible. But Everytime I try there is yet another roadblock.
Tonight I attended an event for a couple.of friends speaking of a product that I could benefit from. And while everyone was speaking of their personal experiences I was putting all my energy into not crying. Everything they were speaking of is what I want so badly. It seems so good to be true but what if it doesn't work for me? Is this how I will be for the rest of my life?
Maybe my emotions are just out of whack because 5 years ago this would be the week I was being prepped for my stem-cell transplant. November 30th will be my 5 year anniversary or as they say in the transplant world, re-birthday.
I just thought I would be more ahead than I am now. Lung and Thyroid issues. Possible cataracts in both eyes. Fatigue and Memory issues. I just want a break. I miss feeling normal. This new normal is difficult to accept. But I don't have a choice. If I don't accept it than it could be worse with me no longer being here. I thouhht it would be easier by now. I just need to learn that just because I accept what it is doesn't mean I have to like it.