Long Roads are Paved with Potholes, but it just gives you more time to enjoy the scenery. I’ve just finished a long day. I broke out in tears more times than I can count, I filled over 10 vials of blood, and I sweat through my shirt waiting for results. I can honestly say I got through this day with blood, sweat, and tears.
My PET scan results came in and I can say I am very pleased by them. My doctors do not share the same view. The cancer in my lungs has shrunk, and the cancer in my abdomen has slightly shrunk. Dr. Avani wanted to see the cancer near gone. The problem I see in this is the fact that I received NO treatment for 6 weeks. My last PET scan was at the beginning of January. My original treatment ended in December. I didn’t begin this new treatment until the middle of February. Therefore, during the time that I was not getting treatment my cancer could have grown. I have no way of knowing as I didn’t have a PET scan in the interim. Another reason I tend to disagree is the fact that technically this latest PET scan should have been done next week. I just finished chemo on Monday. There is no way that the chemo’s effect could have taken place. I am happy and positive it will continue to work.
What does this really all mean? It means that the doctors have decided that an autologous stem-cell transplant (stem cells provided by me) is not something that will work. They feel with how hardy my cancer is it will only come back with a vengeance. It will mutate into a super cancer that they feel they will not be able to handle. They now feel an allogeneic stem-cell transplant will be best. This means I receive stem-cells from a donor.
Don’t let my above disagreement with the doctors make you think that this would be a mistake. Clearly there is something wrong with my body. 12 years ago it decided to overproduce B-cells, and now it is overproducing T-cells. I fully agree that an allogeneic stem-cell transplant would benefit me most. I believe that had we used my own stem-cells, it would only be a matter of time before my T-Cell lymphoma came back.
The long term plan… the road paved with potholes… will go something like this. For the next 2 months I will continue with a slightly different chemo regiment. This has nothing to do with stem-cell, it’s because the Cisplatin has caused Tinnitus (could cause long term hearing loss). They will now use a sister drug with its own varying side effects, along with the same Gemzar. During these next 2 months blood from my amazing sisters will be submitted. Both have been more than willing to be donors. Together there is a slightly less than a 50% chance that one of them will match. If they fail as a match then we go to the registry. This is a long process. Odds of finding a match from the national/international registries is between 60-70%.
After my match is found the potholes become closer together. I will have to be hospitalized for 30+ days. I will be given what was referred to me as Super Chemo. It will kill everything and leave me needing 24 hour hospital care for about a month following. I will then have to live in Stanford. This means I move. Not only do I have to move, I have to have a caregiver. The time I have to live here is all dependent on how well I do. The estimation is 60-90 days after the 30 day stay. My caregiver will have to cook my meals, dress my bandages, flush ports, along with driving and other everyday activities. I thought I was asking a lot with having people provide meals for my kids… now I’m asking for others to put their life on hold for mine. What’s amazing is I already have 4 people willing to help and be a caregiver. I feel very loved.
My biggest heartache is being away from my kids for so long, but this time will be but a blink in my life and theirs. I would much rather lose a summer from this disease than a graduation, a wedding, or a grandchild. I want to be around for everything! If that means I lose out on 3 months then so be it.
Sunshine: I’m alive and I’m grateful.
Rain: I’m still fighting to be alive.
Puddle: I’m enjoying the rain because it fills my potholes… I refuse to do anything without enjoying it!