Set back or blessing in disguise?

A new development began on Friday, Nov. 11, Remembrance Day.

My hematologist called and we had a long talk about a new turn of
events. It seems that Health Canada will NOT cover the Vidaza because
I have already gone through the process of finding a donor. Usually
this is not a problem, as they have done this for loads of patients,
but somehow, she said, they “caught wind” of my case and will no
longer supply the drug. This is what patients use instead of
transplant, but for BMT patients it is used as a deliberately
temporary measure, which I guess is not acceptable by Canada Health
standards. Honestly, having such rules and restrictions is ridiculous
red tape– I mean, isn’t their objective to help patients get better?

I am feeling rather terrific other than those first few days of the
drug where I was mostly just depressed. Dr D was quite despondent
about it all and said she and the pharmacist have been trying to
make it work but HC just won’t budge. Particularly frustrating is that
Dr B in Toronto, who told us that Vidaza was covered, is mysteriously uncommunicative on the topic. What I did learn is that the cost of the first round of treatment is being absorbed by the hospital, all of $4500!

That is the bad news. The other perspective is that this buys me some
time to look into alternatives. This week I asked for copies
of my medical records to send to a clinic in the US that I have been investigating (more on that later).
In the meantime I am awaiting Ottawa’s word on what is the new course of action. The last bloodwork I had yesterday indicated that I am now very low, as is expected at this point in the treatment cycle, and we expect the numbers to start going up now. I will check again on Monday to confirm this.

I wanted to mention how awesome nurses are. They are like secretaries; they are the glue that holds everything together, they know everything and make the connections needed to help patients/clients. I love my nurse. She is the one who clarified things when I was confused and is getting together the paperwork I asked for to avoid going through the records department and paying over $35 for someone to rifle though millions of files to find the results I want.

One reason I am wanting these is because for one thing I just want them for my own files. I started collecting them last time but there were so many and I got bogged down with other stuff like, say, survival. The hospital has a huge file on me now, but I just wanted to collect and graph bloodwork (CBC) over the years. Patients actually have a right to their files and need to ask for results of any tests if they don’t get them from the hospital. Too often we remain complacent, assume that we don’t need to know, but it is part of being a proactive and conscientious patient.

The other reason I want these papers is to send them to a clinic in the US. I came across several in my research and of those, a handful look good (the Gerson Institute being one) but they are all focussed on cancer. However the Issels Clinic in San Diego intrigued me the most because it seemed the most integrative, and they weren’t averse to using chemo if it was necessary for treatment. Actually, the more I read about it, the more it seemed like exactly what I want in a healing clinic.  I was most impressed that within 24 hours of submitting a request for information, I got a call from the clinic asking for said paperwork to determine if I can even be considered a candidate for patient. (They had several illness listed in their menu but I did not see MDS, though it is not as “popular” as other diseases so it may not have been there for that reason.) There is a sister clinic in Tijuana, Mexico. Both clinics have served several Canadians and some patients with leukemia. If I choose this course, which in a lot of ways feels right to me, it will cost a lot. I mean, a lot. There are ways to cover much with special insurance options, but it also means a flight and presumably extra accommodation if any family accompanies me. It is something to consider. I wouldn’t be truly me if I didn’t.