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.

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Time for the Big Guns

There is still a fair amount of assimilation in progress, but I know people are waiting to hear how the Ottawa Hospital visit panned out.
The fellow we met with there is the head of the BMT team. Along with him were 2 ladies who are also part of the team, one for out patients and the other was I think the head nurse (so she had the best information). Dr Bredeson was pleasant enough, is sincere in wanting to “cure” me, and I have to face that there really is no question about how to proceed, as he stated 98% would do the transplant. I should have asked him what the other 2% would do. The bottom line is, if I don’t get this transplant now, then leukemia is more than possible. He said that they talk about my case twice a week, Mondays and Wednesdays. This was a surprise to us as things had been so quiet and I was beginning to wonder if I had been forgotten, like that first day in the chemo room at KGH.  I am not sure where the communication break down was, but we feel better knowing that I am being taken care of even if I don’t know it. I made it clear to Dr B that he is dealing with a patient who is at opposing ends of the medical spectrum. He indicated his understanding by demonstrating with his hands on an invisible scale: This is where homeopathy is…..and this (on the extreme opposite) is where we need to be. To this I feel I must resign myself, but it doesn’t mean I can’t do other things to make this transition (I like that better than transplant!) as smooth as possible.
Dr B described in detail the transplant procedure from my end as preparation takes place. The donor is the one who decides if they are available (in case one is pregnant or has developed hepatitis, for example) and which type of donation they make: bone marrow directly or peripheral stem cells from the blood. The former is the better option and which is what they request from the hospital. As I do not have a matching sibling I must get an allogenic non-related match. There are 2 confirmed donors so far, both males, and each of the matches are 10/10 (the first numbers in my favour!). The fact that the donors are male is also fortuitous because female stem cells can have added complications with hormones. I asked about the ethnicity question and he was surprised that I had learned one of the donors was in Germany. Pete and I looked at each other and said= oops! Hope someone doesn’t get in trouble about letting that out. I mean, it’s a big country, and anonymity is secure. One reason Germany had a good match is because their donor program is top notch. It makes no difference about being German or not, because it is actually the WBC that determine the match, not the blood type, though being Caucasian helps. Asians and other ethnicities have a more difficult time finding donors, for example. When the cells are “harvested” they are fresh, not frozen, so the closer the better. The way it works is, while I am getting prepped with drugs to kill off what faulty immune system I have left, the donor is contacted and he goes to the local hospital to have the cells removed. If he does donate the marrow directly, he goes under anesthesia while they remove the cells from his hip bone, gets topped up with extra RBC and maybe platelets if necessary, then goes home with maybe some pain in the hip where the marrow was taken. The cells go into a cooler and an RCMP person who is waiting on standby takes the cooler and gets on the next plane to Ottawa to deliver them.  The cells are then infused into me for about 20 minutes, so it is all very quick and time sensitive.  As the new cells go in, the blood cell counts go down as my bad cells get bumped out and then the new cells settle in, a process called engraftment, and then the numbers go up again. How this happens, that is how the cells, once in the blood stream, know where to go, is a mystery even to the medical profession. It is one of those things that demonstrates the body’s intrinsic healing mechanism.
While this happens, I am to be watched 24/7 for any signs of rejection or infection, particularly GVHD or graft vs host disease which is a whole other ball of wax wherein my new immune system may be attacked as foreign and unwanted and present me with a plethora of nasty side effects that are to be further blasted with more drugs. I assume with an already poor IS this may not be as serious an issue, but other organs can be involved so there will be masses of antibiotics flowing through me to head off any potential infection. What this also means is I will be monitored constantly and in striking distance of the BMT team for about 3 months and the team will see me daily. (This adds further complications I don’t want to get into right now.) It takes about 6-8 weeks from the moment they get things going, so I am looking at February for the transplant. It would be ironic if it was on my birthday. The sooner I give the go-ahead, the sooner they can pick the date and activate everything. I wasn’t ready to decide on the spot. I made it clear what my feelings/beliefs were so they knew what they were up against.  Overall we were impressed with the organization of the team and their genuine concern and care for me. What sucks, among other things, is that it could take as long as a full year to get back to a normal life and even after that I need regular follow ups in Ottawa, first weekly then monthly and then it should taper off.
I don’t see any other way to get through this. Where I am now is too far past the point of return for any nutritional or supplemental intervention. All I can do is eat well as much as I can, take basic supps., be positive, use energy healing and meditate. One thing I am grateful for is the timing– to be indoors in the middle of winter is not too much of a hardship for a sun worshipper like me.  It will be like hibernating. As spring comes, I think of it as a rebirth.
We are trying to get on as normally as possible but then it hits me and I want to bust a wall in. I tried looking at the marrow support forums but they are more depressing than I was expecting so I will save that for when I feel stronger. As you can see, it has taken me three days to be able to even write about this. Things have been pretty overwhelming and I find myself at turns exhausted, spaced out, blank, engaged with my family, then disengaged, trying to get in the holiday spirit, and depressed.  All of these things I know are normal. In order to be able to read about transplants and complications, I need to be a bit more removed. On the other hand, this is the kind of research that is a good distraction, and I’ve always loved learning new things.  I can think of a million other things I would have preferred to learn, however…