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."
Sunday, July 25, 2010
I'd been making phone calls all week to arrange Friday so I could have both pheresis and chemo, but come Friday I just didn't want to subject myself to al that nastiness.
I ditched the pheresis making what would have been an 8am-4pm day at the hospital an 8 am- 12pm day.
I still went home and slept through ANOTHER of x's soccer games, which I hate, but come Saturday I was able to sit up, talk, hold conversations.
I folded clothes. I talked on the phone. I typed on the computer.
I'm doing damn well.
Hmmmmm, this leads me to think that maybe all the terrible side effects had something more to do with the extreme shock to my body by having both pheresis and chemotherapy at the same time.
That is quite a shock.
I take most of my blood out to manipulate the white cells then I take the elevator right up stairs to ingest a medication used to kill off those cells among others.
My immune system doesn't know which way to go.
Without the double whammy, I'm doing better. I'm doing so damn well I wanted to cut back on my prophylactic meds.
If I can fold through a couchful of laundry the day after chemo, I think I can drop my decadron dose. I'm also barely feeling nauseas. I've been able to eat and drink well when I'm awake.
No use pouring more toxins into me, especially a very scary steroid like decadron, but who, exactly, would I call on a Saturday to okay a dosage change like that.
I ran the options through my brain. . . . . .
If I was at Dana Farber, which is very patient centered, I would possibly be able to get ahold of my very own transplant specialist. If he wasn't available, I'd talk to his associate.
If I called Dartmouth, I'd probably get a fellow who wouldn't know who the hell I was or what the hell to do with me.
They'd probably tell me they had me listed as palliative care and go die somewhere
Weekend care is a problem.
It is. It always has been where ever you are, whether you are an inpatient or outpatient.
It's just a little scarier in some places over others.
I cut the decadron dose in half based on what I felt safe doing.
It scares me, just a little bit, the liberties I take with my medications due to my inability to access qualified opinions.
You would think after paying out millions of dollars into the medical system, I would at least receive a medical opinion on a Saturday.
In any other industry, almost a four million dollar investment would make me a hot commodity.
Not in health care, no sir.
As an answer, There has been a proliferation of on-line medical services where you can seek advice for mild medical problems. Most require a monthly fee, but due to liability, will overlist all the possible diagnosis and still refer you to a real, living, breathing provider whether or not it sounds like you just have the common cold.
Symptoms of the common cold can mimic symptoms of leukemia as well so until these websites include cicscos satellite care system, they're probably a waste of time.
They're a waste of time of mine, because I don't have the time or energy to type in over four years of medical history to explain how I've ended up where I am, here, mostly bald, which takes attention off my swollen face from all the steroids on baby chemo that almost killed me playing spin the bottle with cancer therapies.
In good news, two of the Senate Bills I advocated for, SB 505 (establishes the commission on health care cost containment and establishes a one-time assessment on hospitals, ambulatory surgical facilities, and health carriers to fund the operation of the commission.) and 392, (This bill requires the insurance commissioner to hold an annual public hearing concerning health insurance costs to identify and quantify the factors contributing to cost increases in health care services in New Hampshire. The commissioner shall prepare an annual report to be submitted to the governor, the president of the senate, and the speaker of the house of representatives. The requirement for public hearings is repealed on July 1, 2014.This bill also requires hospitals, when billing self-pay patients, to accept as payment in full an amount no greater than the amount generally billed and received by the hospital for that service) has been signed into law by Gov. Lynch.
If you didn't know, now you do, previously, self pay patients (those without insurance) were often charged MORE for procedures than people with insurance because the insured were able to receive the negotiated group rate where the uninsured had no one representing them. SB 392 now makes that practice illegal.
The celebration party with the Governor was Friday, which unfortunately was a no go due to therapies.
So I have big hopes this next week will go relatively well.
I'm packing our bags and moving into mom's tomorrow while J is packing his bags and going to Cincinatti. It won't be too much of a feat since all our clothes are clean and folded just waiting to be thrown back into suitcases for another week.