A Quick Update and Issues About Going Public

Greetings friends! This is just a “filler” post because I just noticed a deadline is coming up and maybe it will help someone. This Saturday, September 29, there will be an AA/MDS Patient Education Day at  the  Novotel in North York.  If you are in the Toronto area and are interested in learning more about bone marrow disorders, this is the event for you. It is free and well attended, with speakers ranging from patients to doctors. I highly recommend it.

In other news, I discovered a few things about WordPress (that I now cannot find anymore, but I’ll keep trying) and that is Worpress Stats.  These tell me  that there have been thousands of hits on my little ol’ blog, from just about all over the world! Everywhere from Norway to South Africa, Singapore to Mexico… it is exciting and gratifying that so many people have access to this information! Ain’t the internet awesome?!

This month I have begun my vaccination regimen. Those who know me well know that I have issues with vaccines, but like everything else I’ve had to reconsider in this process, I’ve had to relent because of my situation, which is that I DO NOT have a MATURE immune system! When I was a baby, breastfed, playing in the dirt, catching things from nature, from school, travel, I acquired a natural immunity. With a new bone marrow, I have to re-grow this immunity, and short of the methods I had access to as a child, I need to do this artificially. So far I’ve had two kids’ shots, Prevnar and Pediacel, which cover things like pneumococcal (for meningitis and other nasties) and DPT, respectively. I am also getting Hep B and later will get Menactra for meningococcal meningitis, and soon, a flu shot. Instead of some poor people in the US who are going through the same situation and suffering from terrible side effects because they seem to be getting several shots simultaneously, my protocol has them spread out (sorry, I ran into these sorrowful stories when I was researching several months ago and cannot find any to share, thanks to losing all my bookmarks, but they are out there if you want to look!).  Thanks to a vigilant nurse at my doctor’s clinic who has taken me under her wing, I never wait more than five minutes to see her, there is no rushed service, she informs me of everything, records lot numbers diligently and succeeds in finding ways to reduce cost of these otherwise rather expensive vaccines. How I love nurses! So far, the only after effects I’ve had are soreness in the arms because they go straight into the muscle tissue. Brings back childhood memories– no wonder babies scream!

By now most of you have heard about AMC anchor Robin Roberts’ transplant.  This ABC newsvid includes good animation to show how the procedure works.  This has been great exposure for Be the Match and bone marrow disorders, but lately some have criticized the situation as “over the top” coverage and exploitation. I personally do not see how this is exploitive– if it had been anyone else, fewer people would have ever heard of MDS, a disease which takes a back seat to other high profile ones when it comes to support. It is Robin’s choice to publicize her situation, just as it is anyone’s who has a condition they would like to educate others about. True, here is a definite wariness if things don’t work out, but in the meantime, thousands of people have made a difference because of this exposure. To say ABC is exploiting Robin’s illness for ratings is unfair. I wish her well and support her decision whether or not to share what she is going through.
Another woman who is recording her experience with a bone marrow transplant is posting on a blog through the New York Times.  Amit Gupta, who I’ve been following,  continues to post online his progress and life experiences after transplant. He is doing well and living large!  These are all places of encouragement that are helpful to patients and their supporters and I encourage their dissemination. As another example, I just came across this interesting site that has a community seeking “bone marrow warriors” and effective ways to increase awareness about bone marrow transplants, definitely something worth passing on. If I may quote from Michael Guglielmo‘s blog posted here, “…the only strategy that is left to build a sustainable bone marrow movement is one that is built upon an inspirational story that is marketed around the country cultivating a platform that encourages others to join the registry to save a life and exposes this life saving movement to other organizations who then partner with the campaign to encourage its following to join the registry…”
Indeed.
More awareness is achieved through various organizations like AAMAC. The annual event for blood and bone marrow diseases is coming up on the third week of October– you can find info on their site. Support groups are growing across Canada. And if you like Mounties, and who doesn’t?, you can support their foundation for bone marrow awareness at the Bruce Dennison Bone Marrow Society. You remember Bruce, he’s the RCMP officer who died of complications from an unrelated bone marrow match just 25 years ago, and who inspired a partnership between the RCMP and the Canadian bone marrow registry, now One Match.
Next time I will post some picture of the progress of my hair, which is long (short?) enough for me to feel more comfortable going without. Friends have suggested I go for the total look with a safety pin in my ear and dark goth eye makeup. It could happen!
Until then, stay healthy!