An Anniversary

 

This winter has been a time of housekeeping. My first follow up of 2013 was very successful– an A+ in wellness! Everyone is pleased with my progress and vaccination records made in Kingston (thanks to awesome nurse Rhonda!) and my general compliance with protocol. I was reluctant to follow through with dental and eye exams, but took care of that eventually. My teeth were remarkably good, said the hygienist, considering I hadn’t been to the dentist in five years… how did that happen? I assume I hadn’t gone because I was worried about infection and low platelets.  Now I have plenty and it was just fine. I suppose it is an automatic reflex for the hygienist to say: So we’ll just take a couple of X rays…. to which I said no immediately. I feel I have had more than my lifetime’s share of radiation, than you. My bone marrow density test was completed and I will meet with my family doctor about how to proceed with bone maintenance, since I am at higher risk for bone issues due to steroids and other chemical onslaughts. I’ve been reading up on this and am not keen on the standard treatment, Fosamax, for a few reasons, so I will discuss alternatives with my MD. At the 6 month post transplant mark, July, I will have a follow up lung test, and a few more booster shots for general upkeep.  I was told at some point that I must now have flu shots for the rest of my life, but I need to investigate this. At what point can I say that my immune system is up to par?  I am now able to reduce meds and am down to half the Acyclovir and one last round of Septra. I have not had anything remotely like a cold; must I have to continue to baby my immune system?  How can I find out if it is working properly if it is continually being supported? My supplements at this time are vitamin C, digestive enzymes, a multi, a calcium/magnesium blend with trace minerals and as I wean off the antibiotics, some probiotics to get the intestinal bacterial balance back. Should I welcome a cold to see how things go? I do still need to check in if I ever get a fever, so I guess that independence is still some time away. Considering all this, however, I am free to travel, so next month we are all going to San Francisco where Pete will be conducting a workshop and the family will spend a week exploring the bay area. My only caution is to be sensible during travel, especially on the airplane which we all know is a cauldron of germs. I have missed traveling, so this is a very special opportunity for me.

One odd thing I thought I’d mention was a sensation I had last week writing on my iPad, something I rarely do because I get frustrated with the keyboard. As I was typing, I had a familiar and very unwelcome sensation come over me, a slight nausea that was a throwback to how I felt a year ago when I was starting my blog. It passed when I put the iPad away and turned to the laptop. But that muscle memory response was curious. I have a similar reaction to eggs, and have only just recently been able to stomach the scrambled version.

Physically, my weight has fluctuated a few pounds up and down from what I was before transplant, but has positioned itself in different places, meaning the jeans I had to buy before are already way too small! Meanwhile, my hair is coming in nicely, I suppose, really dark with lots of gray, that I had trimmed last week so that it looked the way a pixie cut should look, instead of an unruly combination of stiff and downy strands. Still not comfortable with the color, but others compliment me on it, so I can live with that until I can do something about it. Maybe eventually I will try an Ellen hairdo!

My other BMT colleagues carry on with much success: Robin Roberts will be re-joining GMA next week and she looks fabulous. I am so pleased she has done so well. Reading her account in People Magazine brought back some unpleasant memories, but there’s nothing like making that instant connection with someone who has been through the same as you. Amit Gupta continues to be an advocate for bone marrow registration.  He spent some quality time driving across American by motorbike (which totally rocks!), traveled to Japan and is back in San Francisco working again at his ever-ingenious business, Photojojo.

In other transplant news, it was interesting to read that there was a record number of transplants in Ontario last year. This included all organs other than bone marrow (yes, it is an organ)– mostly liver, kidney, lung. There are two ways to look at this story– it is good that such transplants are possible and accessible, and successful, though changes in reports from medical centers can influence such numbers. It was reported that there had been a 15% increase in organ donation, but there are still hundreds of patients who do not get the transplant they so desperately need, and many people are still unaware of how to proceed with organ donation wishes.  The other side of this story tells me that more and more people are requiring transplants, which I believe says plenty about issues that affect our health as a culture, something I will not get into now. The simple fact that organ transplants reaches into our radar that is otherwise occupied with a combination of inanities and things of importance is key in recognizing that this is a serious issue that we can actually do something about, even something as simple as completing the organ donation card that comes with your driver’s license or going to the Trillium website in Canada or, if you are in the US, to look up your state and organ donor information. I do not have actual statistics on Canadian bone marrow transplants (I am working on that and will report back) but in the US there is a very comprehensive, state by state list of transplants by disease that is quite fascinating.

Last night (the 16th) Wolfe Island rocked! To celebrate my first anniversary post transplant, only two days ahead of my other birthday, I chose to have a dance party at our home. My thinking was, next year is a “zero” birthday, and not one I am particularly looking forward to, and since the transplant anniversary was to me more more important, I decided to combine the two and have a full on blast. People came from near and far to dance, drink and be merry. I had spent a few weeks creating a party set list– fortunately, it was a hit, and everyone had a fabulous time! I just wanted an excuse to dance , which I did for four or five hours, I am not sure because I wasn’t paying attention to the time. All I know is I was active most of the night and when I went to bed my feet and knee were aching and my body was buzzing. I have to say, my new marrow got quite a workout!  I tried to stay hydrated with water and drank only a little at the beginning, because I wanted to not get sleepy. Once I caught my second wind it was hard to stop! The kids put up streamers and later created an impromptu and quite lovely birthday sign that they had hanging from the staircase all night and towards the end of the night the music stopped and everyone sang Happy Birthday to me with a single candle on a piece of left over cake!  By 1:30am everyone was gone and we were in bed and I could not sleep for at least another hour because now my mind was busy and full of thoughts.  To be able to have the opportunity to be this active, to have all my friends in one place to celebrate with was a treat.  Everyone there had in some way contributed to my wellbeing, and for this I will always be grateful– this party was not just a chance for release and celebration, it was also an opportunity to show my gratitude to my community.

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As the last few weeks led to this special day, I found myself typically reflective. Moments where I would catch myself remembering where I was a year ago, how unsure everything seemed. I couldn’t picture what it would be like, I just focused on getting by one day at a time, sometimes one hour or even minutes at a time. Each of those accomplishments like taking a bite to eat, getting dressed, taking a bath, walking, pale compared to where I am and have been for some time. Now I have moments where I recognise the ease with which I do something– here I am cross country skiing, here I am taking a shower and not worrying about holes or tubes in my chest, here I am enjoying a little Canadian whiskey, my latest occasional indulgence I am just appreciating for I am not a liquor person, here I am enjoying a real hamburger or Thai curry chicken, here I am dancing my face off. I consider myself incredibly lucky to have recovered as well as I have. I see myself in the middle of the BMT triad, with Amit Gupta a month ahead of me and Robin Roberts a few months behind. All of us are success stories that more people need to hear about.