The MIRACLE has begun
Hi:) wow. Talk about the longest two days ever, and i am in so much pain, I am not even sure how to process it all yet-but I guess miracles are not things easily processed. The majority of the results are outstanding – yet there’s one tumor that decided it’s doing it’s own thing and not responding, which I will explain more below.let’s start with all the miracles that I listen to as my oncologist spoke to my family and I yesterday:
All my soft tissue(except in the sacrum) and all my organs are completely clear- AND my spine tumors are all stable, one has even shrunk a little- which means we finally found a way to reach my spine and get to the heart tissue ! In addition to all of that, some of the lymph nodes have shrunk at the top of my left leg, so the fluid from the lymphedema is beginning to be able to move up and out of my leg, but there is still a lot of work to do for that issue. For the lymphedema, I am working on getting a machine called a lympha-press, which I can do up to four times a day and people I have spoken to who have use this machine, said it is A miracle in itself. I can’t wait to try it, but it will take a few weeks for us to try and get insurance to cover part of the cost and for them to make the garments from my specific needs.
……now for the one piece of bad news…the growth in my sacrum which was small a few months ago, has grown significantly. This has been what is causing me more pain, because more nerves are now involved. This mass(tumor) is why I am too weak to walk- but thank god the tumor is in my sacrum and not in my spine (which was on all of our minds, so My PT told me to stop trying to walk until the scan and we knew what was going on) because if it was in my spine, they said I would be on the fast track to paralysis. So since it’s not, I can go back to PT and work on walking and strength training again, but it will be very painful until we figure out how to get rid of this tumor in my sacrum. But- no pain, no gain, right? I have definitely taken a few courses in that these last few years!
The spine team is meeting tomorrow to see if there is anything we can do for the sacrum mass- one thought is that this tumor may have a different mutation than the rest of my cancer, because the sacrum is soft tissue as well, so it makes no sense that it isn’t responding to treatment, since all the other soft tissue has responded so incredibly well. Leave it to me to hear, “this is very rare to happen” and leave my doctors confused why it’s not responding, when my “hard tissue”(my spine tumors and pelvis) are even responding by staying stable and even some shrinkage with this new treatment.
If you are wondering what’s next:
I will continue on with my miracle treatment, which is keeping everything at bay and getting rid of most of the cancer. While I continue on this treatment, we will be looking for a way to get rid of this tumor, get the lymphedema under control, and as soon as these two things are accomplished, I will be on my feet again, dancing every chance I get, surfing as soon as I can, and swimming in the warm Caribbean Sea somewhere beautiful… So here’s to one major miracle accomplished and a few more miracles that I know will happen over the next few months.
Thank you to my incredible tribe for ALL you have done to help me get where I am today, and I can’t wait to see what miracles will happen tomorrow:)