My sad little ankles
New Years Eve 2013. This is the year I got new blood cells. I could do a year in review summary but it would read like a horror movie. There are good things too but good things always seemed to be overshadowed by the horrifying. I know all about positive thinking and trust me that I do it every day. This isn’t going to be a feel good year end review. Because, well, I’m not feeling it. I try to be honest in my blog because I have readers far outside just my friends and family and people need to know what happens. It doesn’t help other people struggling to gloss over things just so I can save face. And recently I haven’t been able to blog because I fear being thought incompetent. If I share too much some wonder how I’m even able to function let alone work and take care of my children. How can a person go through what I’ve been through and then be able to go on and be normal? The answer to that is just that I am here. My mind is fresh. My body will take longer.
At almost a year after transplant I am seemingly better in a lot of ways but the coming tests and appointments over the next few weeks will tell for sure. I will have a bone marrow biopsy to check for leukemia. Blood tests of all kinds to check levels of white blood cells, red blood cells, platelets, electrolytes, minerals, neutrophils, hemocrits, hemoglobin, lymphocytes and so on. This information will guide my medication and continued treatment. They search the bone marrow superficially and then use computerized scanning machines that can find the tiniest little mutated cell in a sea of a thousand. Initially I had almost all mutated cells in my blood. After two weeks of chemotherapy not a single one was found. They have not seen a cancer cell in my bone marrow since. I don’t expect that to change.
I was told before transplant that a person usually trades one disease for another. Going in they can’t predict what will occur but patients usually end up with other life long afflictions even if the cancer is cured. It will be a long time until I am considered cured but it turns out that so far I’ve traded leukemia for bone disease. It won’t kill me but its a disease to be treated carefully. It’s dehumanizing and crippling. From my perspective I never thought that I was dying. My head just never went there. I know that I could die from this and that there is a very real possibility that I will die from cancer at some point. And yes, I will say it because no one else will. I know that most people had doubts that I would make it this far. People didn’t expect that I would get to come home or return to work or do any of the things I’ve been able to do.
But what I’m dealing with today is not something I expected. The thing with cancer is its not all or nothing. Its not as simple as dying or not dying. In spite of all the amazing success stories you’ve seen on TV or read about in human interest stories in the paper, cancer isn’t something that either kills you or you then go on and do great and fabulous things like running a marathon. Sometimes you stay alive but at a cost. The price and the worth is subjective. And the pressure to go on to do great things and live life to the fullest is too much. I just want normal.
I have osteoporosis and Avascular necrosis in both hips and ankles. I suspect that I have it other places as well but they only scan one place at a time and its guided by my pain. The pain that I had in my hips is AVN and my current pain in my ankles and the cause for the right fracture is AVN. Yesterday I had a X-ray that showed my fracture healing but AVN still apparent in both ankles. He said that the location of the death of tissue is “challenging”. He kept using that word until I asked him to stop using subjective modifiers and just tell me what it means. He said that maybe 20% of the time my condition will heal. That means that 80% of the time it won’t. When I was diagnosed with AVN in my hips I was told that the treatment is a hip replacement. There is such a thing as an ankle replacement but they suck. Doctors won’t replace ankles in a person younger than 60 because the synthetic replacements won’t last very long. Depending on what the MRI says my options will be to
1. Live with the pain and hope maybe it will get better.
2. Core decompression surgery. The doctor drills holes in the bone to stimulate vascularization.
3. Ankle fusion surgery. The doctor screws my ankle to the foot. This permanently locks the foot at a 90 degree angle. There is no up and down movement possible but some side to side range of motion preserved.
4. Cadaver bone graft to replace my ankles with one from a “dead guy”. Quote is from my doc.
These options aren’t great and I don’t know what the best option is yet but I have to start to recognize my limitations and do what I can do instead of focusing on what I can’t. I will probably never run again. But I never really liked running anyway. That crossfit stuff that hot people do at the gym? Not possible. I can swim. I’ll probably be able to do yoga. I was whining to my dad on the phone because I wasn’t seeing the positives and how to remain functionally independent with my physical condition. He had some very decent ideas on remaining active and utilizing what I have left. Sometimes just a change in perspective is all you need. Sometimes even though you can’t do everything you have wanted its okay because the alternative really isn’t that bad. It hurts my pride in a lot of ways because I want to be super woman and do it all on my own but I can’t. I think this year will be about accepting these things and finding contentment in what I have. And I think it’s this way for everyone. Not just cancer people. It’s not settling to adjust your goals. This time last year my goals were to shower, brush my teeth and walk around the transplant floor everyday. Today, those goals are easily met. I know I push too hard and too fast and it does more harm than good. I am here and that’s enough. It’s not a wasted life.