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."
Saturday, May 30, 2009
First things first, good news, Danielle has gotten a pancreas!
Yes, after years on the transplant list she was called and told she had on organ on Wedsnesday and called to surgery yesterday!
Having her get “the page” was one of the most exciting moments of MY life, I can’t imagine what it was like for her.
She was given the evening and called to surgery for transplant early Thursday morning. She was advised there was a 24-hour window for placement, which luckily, gave her and her family a couple hours to adjust, making some arrangements like daycare, etc.
I was able to run in and visit her in same day surgery after my appointments at Norris Cotton yesterday.
She was lying around in her johny, filling out paperwork, looking cool as ever.
Her husband, however, was sweating a little, leaning forward, eyes darting, and not quite his funny self.
Maybe he was nervous about something crazy, like, I don’t know, his wife going in for major surgery to put in a foreign organ?
Not only has she received her new pancreas (the surgery was on Thursday), it has started working all ready!
I didn’t realize this happened so fast.
The reason for her transplant was for control of her diabetes. She was selected as a candidate for this relatively new procedure at Dartmouth Medical due to her high patient compliance.
She tried everything to control this nasty chronic disease: exercise, diet, the gamet. She had been using an insulin pump but was still experience severe fluctuations in her sugars at times.
Yesterday, her sugars were normal! Normal all ready. YAY!
She’ll remain in the hospital about a week. She will probably be transferred out of the high acuity care unit tomorrow or the next day.
Everybody, be happy and think of Danielle today.
In fish fiasco news, the original Smokey has been replaced with a new version, also “Smokey.” This one is a deep blue/purple. It is feistier and livelier, and it survived its first night.
However, I have caught Josie, the offending cat, aka “Miss Priss,” peering over the bowl and licking her lips.
Xander didn’t take the news that Josie had snacked on his pet very well yesterday. He hollered and sobbed. Then he went straight to Nika, our dog, and advised her that Josie needed to be eaten.
X didn’t tell me how Nika responded to this request, but Josie is still prowling around the house.
Nike is just not that type of girl.
X wants to get rid of Josie now, but I have explained to him that Josie is part of the family, and we do not just kick our family out of the house when they misbehave, like “Ohana” in Lilo& Stitch (the Hawaiian word for family that means “no one ever gets left behind.”).
Moving on to me and my disease, It’s time to be very clear about my disease process.
I have been being asked a lot of very complicated questions recently regarding my health, and I want to make sure everybody has the basic facts before I talk about my possible treatment options in the future.
I have cancer.
I have had cancer.
My allo-transplant did not send me into a significant remission.
It is debatable whether or not it sent me into a remission it all.
It was best for my psyche and my healing that I thought I did.
This is a gray area in cancer care post transplant when all the potential beneficial effects of transplantation have not been seen.
Graft vs. Host disease is actually a benefit during transplantation due to it’s anti-cancer qualities.
It shows the donor’s immune system is working and working hard, recognizing yourself as a foreign body and hopefully killing the cancer in the process.
Dr Alyea is always saying, “If we could order a little side effect from the pharmacy, it would be some graft vs. host disease. . . . . . . “This statement was cute and true the first time.
After the fifth or sixth time of saying this, I told him no more writing orders for GVHD, it was making me miserable, and if he did, maybe he should be a little more specific about the ramifications and areas to hit in the order.
Just a suggestion.
That was about the time I was put on steroids.
Truthfully, it looks like my cancer never went away and that it actually returned in the context of my transplant.
This is very bad news if I can’t even achieve a remission during the process of significant treatment. That is one nasty, feisty, tough, resistant cancer I have in my body.
I don’t think it is as nasty, feisty, tough, and resistant as I can be when fighting tooth and nails for my life.
The fur will fly, hair pulling and scrapping is not out of the picture.
With this being the reality, I have been researching my treatment options.
I’ve written about Plan Y and going to the Klinik Im Alpenpark.
The actual schedule is this: On June 18 I will get my next diagnostic PET scan. Depending on the results of the PET scan, I will determine my next action.
If I am in remission, hooray! I’m going to hang around and keep doing what I am doing, living a nice simple country life.
If it is positive, I will start scheduling my treatment in Germany for the end of August.
I do feel a significant need to prepare for this possibility.
My husband is remaining “positive,” and wonders why I am so obsessed with planning this trip and making sure we have the means to attain this treatment.
I say I am being “realistic,” and that “God helps those that prepare themselves.”
It’s made communicating a little difficult.
There has been a little mismatch of expectations in my care between the two of us for years.
He is expecting, hoping, full heartedly, with no preparation for other possibilities for a full-on healing.
I think this is a set-up for devastation, and I don’t feel I have the time to wallow in depression for a week that my cancer is present if it still is.
Time is of the essence. I need to keep things moving, with every test, with every postive PET, I feel like I am taking one step closer to the end of my options.
I have been prepared with contingency plan after contingency plan after contingency plan for years. I’m worried about what may happen when I run out of these.
I have never really considered just hopping from American cancer trial to American cancer trial.
The first trial I participated in went so badly. I was so miserable. I certainly don’t want to feel like a lab rat.
There are always other countries, like India. I hear they have their own version of the American “miracle” Gleevac.
I could turn my disease into a whole globetrotting cancer adventure for a cure.
Some people back pack around Europe and Asia to find themselves in their twenties, I’m going to travel from clinic to clinic seeking the best care for the cancer patients of the world.
I certainly never thought I would do this as a patient, but I hope to use my experiences for everything they are worth. I am enjoying writing about my experiences and hopefully educating all of you about the process and feelings associated with our “situation.”
Transparency and the ability to be candid about any disease process is important to me. I think communication removes existing barriers to accessing the very best care.
Thanks for being my cheap therapy.