I’ve been sugar coating again.
I wanted to give everybody the opportunity to be in denial for a while.
I needed time to organize a contingency plan. I’ve finally got one. It’s not completely organized, bu I’m calling it plan Y.
I’ve been sugar coating the results of my PET scan.
I now many of you have recognized the change in my tone.
I don’t feel I am in any way, shape, or form in remission.
Here is the whole truth. I have a Gastro-hepatic node (a node on my liver and intestinal tract) that is hypermetabolic (bright) that does not show on CT.
I also have a Para-aortic node with increased uptake (near the aorta, or where the soloplex is tha glows on the scan).
DF says it’s impossible to say either way weather these tumors will remain active.
My transplant is still relatively new, and I need to give immune system time to see how it may respond. Any graft vs. host will have an impact on how my immune system responds.
This is why I’m in a gray area.
However, the implications of having a disease reoccurrence during the transplantation process are serious.
I can see my odds plummeting.
My odds were 30% prior to the transplant, now I’m guessing my prognosis is in the toilet, headed for the drain.
I haven’t been able to write properly with this on my mind, but I did need time to confirm what I suspected was a scientific truth.
I have a bad, bad prognosis.
My sleeping has been disturbed. I’m tearful, but I’m not in denial. I was given the option of hiding the truth from myself, but that’s just not how I operate. I’m a stare problems in the face kind of girl, and if all else fails, fight like hell.
As far as coping mechanisms go, I like to intellectualize situations. I gain control be learning everything about my disease and every possible treatment out there. I have a whole lot of options stored in my brain. I’ve been communicating with my providers to form a plan.
I do have a plan. I’m calling it “Plan Y.”
As of last Friday, I started to reinstitute a German homeopathic regimen that shrunk a tumor previously, but it also made me feel well and energetic.
I’m consulting a German Lymphatic specialist to possibly receive treatment through her. Several of the trial drugs in the US are all ready being used there.
I’m refining my diet. Next week I will go to Boston for a couple days to see a Dermatologist, a nutritionist, and Alyea.
In 2003, I had a couple moles biopsied that showed atypical cells. We are rechecking suspicious moles that still remain since they could possibly be the source of undifferentiated cells that keep taking over my system.
There is a no sugar/ low carbohydrate diet that has become known as the “anticancer diet.” I mostly eat like this all ready, but I’ll refine it with the help of a professional.
For now, I’m trying not to mope around. I don’t like being alone. I went on a rampage on a very close, well loved friend when I was concerned she was mistreating my son. I was really angry because she was supposed to be a temporary surrogate mom while I got better. I’m worried she is going to be a long term surrogate in my absence.
If anybody has any ideas comment or email email@example.com
Heather reminded me of her “Tahition noni juice” idea and told me she knew I didn’t think this was such a bad idea anymore. She also talked about a mycologist (Mushroom Man) she knew in NC. He said he had “special shrooms” that may help me. But what I remember of mushroom man is that he’s a hippie that suggested I eat peyote and “throw up” my cancer.
I’m not placing all my eggs in this basketcase. Those shrooms will probably just give me a fungal infection.
If you want to know, below is my original reaction, how I really felt, about my test results.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."