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…”
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!

In the News

A few things have prompted me to add a post here, even though there is not much new to report on what is going on with me (more on that later).

As you may have heard, Robin Roberts, news anchor from ABC’s Good Morning America, recently disclosed her diagnosis of MDS and her ultimate path to a bone marrow transplant, for which her sister is a virtual match. The Aplastic Anemia and MDS Foundation in the US  has responded promptly (as did I on Robin’s Twitter last night) to offer support and information. Robin was clearly quite emotional as she faced the camera, supported by her colleagues. She is lucky to have found a donor so quickly, since this can be a challenge for non-caucasians. As a result of her plight, many people have already responded by pledging to join One Match and Be the Match. This in itself is fabulous, and the fact that Robin is a high profile celebrity will bring more attention to this disease, something that we can, in a twisted irony, be thankful for. In my research, I discovered that other famous names that succumbed to MDS were Carl Sagan, Susan Sontag, Roald Dahl and Michael Brecker, among others.  Since then, there have been leaps and bounds in the fight against this disease, as I am fortunate enough to attest, for only a couple of decades ago I would not have been so lucky. But it is still very uncommon and takes a back seat to other diseases like cancer.

What I found interesting is the almost certainty that Robin’s disease is attributed to her chemotherapy for cancer treatment five years ago.  As far as I know, the only definitive cause of MDS is exposure to benzene. Blaming chemo is quite a leap, though I wouldn’t be surprised, as it does a number on the body and can lay latent until the right trigger comes along. What is also curious to me is that Robin actually made the average “life expectancy” of cancer treatment, only to succumb to something even worse. I hope that Robin is able to document, as much as she comfortably can, her journey to teach others as this disease gains more prominence and ultimately more funding. She has a lot of support and a great attitude, and I wish her all the best in her recovery.

Next I would like to do a “shout out” about a special event tomorrow, June 14, which is World Blood Donor Day! The WHO’s website declares “Every blood donor is a hero”. If you haven’t yet, please consider donating blood and/or  go to OneMatch to see how easy it is to join the bone marrow registry.

Now back to me. On Monday, during an unusual heatwave of up to 40 degrees with humidity, we drove to Ottawa for one of my tri-weekly visits to clinic. Last fall the car’s A/C blew out, so it was a particularly challenging ride for me, especially as I was in the sun both ways and on the last leg home had to climb into the back seat to avoid the blazing sun.  We came away from Ottawa knowing this:

* my numbers are awesome and responding well to the drop in Tacro

* after two more weeks of 0.5mg per day of Tacro, I will stop it altogether! Then we have to watch for symptoms of GVHD which most commonly manifests as skin rashes.

* since the next visit happens to fall on a holiday and it takes some time to organize any medical procedures, it has been decided that we can wait four weeks till my next visit so that I can have my Hickman removed! Apparently it requires minor surgery.

* I can slowly start driving again, short distances first, then later I can drive into town, but not long stretches. This takes enormous pressure off of Pete who has been my chauffeur for months.

* my eyesight seems to be deteriorating of late, making even this blog difficult to read as I type. It is recommended not to get eyes checked until six months, because they could change again, so I have a couple of more months to wait. Concerns are cataracts that commonly occur after treatment.

The changes I don’t notice in me are certainly noticed by others, I suppose just as a new mother notices the rapid growth of her baby after a few days’ absence and not as much on a day to day basis. The kids claim that my hair is coming back and I think they are right, though it is more fuzz than anything else. Others have noticed how I am pretty much back to normal in terms of energy and temperament and that I am looking good, so I appreciate the flattery! I have noticed my energy levels last longer, though too much walking or standing around can still cause exhaustion. I no longer see as many ribs as before yet my weight actually dropped a bit according to the scale at the clinic. I even allowed some flowers that broke off during the gardening weekend to come into the house because they were so beautiful I couldn’t resist. And today my hands made contact with some black earth as I tried to finish topping up a planter. Gasp! I think as time goes by and I am gradually feeling better, we have become a mite complacent. I am still careful to wash hands and use sanitizer when shopping or away from home. But I tend to eat what I want, even if it is not what I would normally eat (aka junk food) because I am more interested in gaining weight and feeling satisfied when I eat. This also means we are eating less organic and are being a little less green in our daily habits. I suppose I attribute it to the fact that I am dealing with more important things right now.  Later, when I can re-channel my energy, I believe I will go back to that more “virtuous” path. But for now we go on a day by day basis. No more occasional morning nausea/vomiting is a cause for celebration, a victory that I believe came from the drop in Tacrolimus. One last thing about that: it was not until a few weeks ago that someone brought up a very relevant and useful suggestion that could have dealt with the nausea and vomiting I had been experiencing earlier, and that was marijuana. It shocked me a little that at no time did anyone make this suggestion at the clinic, nor is it written in any of the official literature or handouts, yet hospitals and doctors are in agreement that this is something that can very definitely help patients. Maybe my symptoms weren’t severe enough. It reminds me of a conversation I had with a woman recently who said she had been battling low blood counts for years, but because they are marginal and not (yet) life threatening, she is not able to get a timely appointment with a hematologist. This is such backward thinking, to not put the focus on preventative medicine.

Next blog will probably be in July. Summer, yeah!