January 2013 Update

Mark is still in the hospital at Baycrest, still in Complex Continuing Care, 17 months after suffering and surviving the massive strokes. The only tube in him now is a trach which takes a long time to be weaned off of. He had the feeding tube removed a few months ago which is a huge improvement. It doesn’t happen very often on his ward. He’s still eating a pureed diet, sometimes on his own, and we continue to bring him 2 delicious and highly nutritious green smoothies daily. His short term memory is very much impaired unfortunately but the odd time he does surprise us by remembering what happened earlier in the same day. He is still progressing at physio. The therapists had him up on his feet a few months ago, which was great! (see photo below) No steps yet but his affected leg is strong and working. Because his good shoulder is slightly out of joint again, he is not standing now as he needs the strength of his arms to support himself. We’re working on getting that shoulder muscle strong and hope that he’ll be up on his feet again in the new year.

His doctor is giving us little hope that he’ll ever come home again, unfortunately. He may have to live in long term care, but we’ll cross that bridge when we get to it. We believe in living in the moment. I’m still with him every day, with one or both of our daughters, sometimes alone. I am completely exhausted physically and mentally, but manage to laugh and smile every day, and get Mark to do the same! He’s in much better spirits these days, which is probably due to a new anti-depressant. It’s just such a relief to be able to say goodbye to him at night without him crying.

These past few months we’ve been dealing with another health matter. Mark has a very rare blood disease, a myeloproliferative disease. This is a disease of the bone marrow in which excess cells are produced. His condition is hard to define as he does not have one of the typical genetic mutations associated with CML (chronic myelogenous leukemia) or HES (Hyper Eosinophilic Syndrome) but a rare genetic mutation. This apparently was the cause for the blood clots and the strokes. There aren’t any warning signs for this condition. He’s had it for quite some time. His white blood cell count, specifically the eosinophils, has been consistently high this whole time, and unless you are getting your blood tested on a regular basis, you won’t know you have this. On top of this it was discovered that his spleen is slightly enlarged. Those two factors alone were enough to send him to see a hematologist at Sunnybrook Hospital. We’ve had a few trips there already since the end of August. In fact we waited the entire summer for the first appointment. He’s had several blood tests and the first of many bone marrow biopsies. The biopsy is the only way to see what’s going on inside the bone marrow. He is taking a cancer drug, not chemo but a targeted drug therapy called Gleevec. He had to go on Prednisone for the first two weeks to ward off any bad side effects, and he handled it well. He also had to have an echocardiogram before starting the treatment to make sure his heart is strong and healthy, which it is.  He’s been on the drug for about two months now and so far he’s having a positive response. He is now taking the full dose, after starting off slowly with it. He’ll have to have more blood tests and another bone marrow biopsy in the months ahead to determine if this drug is right for him. If it is he’ll most likely stay on it forever as the disease is chronic and can be progressive. There is no cure. It’s a huge concern, not just because of the history of cancer in his family, but simply because this is another thing for Mark to deal with.

He seems to tire easily, and he sweats easily too. He is maintaining his weight. The side effects of this drug are not nice, but fortunately they’re not as bad as chemo. You can read about it here if you wish: http://en.wikipedia.org/wiki/Imatinib   (Mark does not have the Philadelphia Chromosome, and he is negative PDGFRa (platelet derived growth factor receptor gene rearrangements). His mutation is on chromosomes 9 and 12.) He also had to endure getting his blood sugar tested 4 times a day while he was on the prednisone. He did NOT like that, but it was always within the normal range.

We’ve had a LOT to deal with as you can see, hence my long absence here in keeping you all up to date. I hope you all understand that I am up to my eyeballs in responsibilities and writing this blog is just one more thing to do. Nobody, except maybe other caregivers,  can truly understand exactly how exhausted I am. My peers at Baycrest are pushing their parents around, not their spouses. It’s been a long and difficult road this past year. I feel much older than I am, most of the time. But like I’ve said before, the only way to get through this is to just deal with the day at hand, not worry about tomorrow, and don’t ever think about the “what if’s” of yesterday. That’ll get me nowhere but stressed out and I can’t afford to do that. I’ve got Mark, our girls, our dog and most of all ME to look after. So far, we’re all doing a pretty good job if I do say so myself. Our family may be fractured at the moment, but we try our best to be a family and have fun and be silly, at the old folks hospital.


2 comments on “January 2013 Update

  1. Sarah Kast says:

    Hang in there kitty! I know someone who was in a wheelchair for 10 years with MS and told she would never walk again, she is walking and sharing her story all over the country. Anything is possible, it just takes hard work and dedication. Don’t let them tell you otherwise! Keep positive thoughts close, and positive people closer!

    The Kastoryano’s are only a phone call away!

  2. igneousidol says:

    I think he is doing great recovering from the stroke. It takes a long time and hard work. He looks happy in his pictures. I am so sorry about the blood disease. I hope it goes into remission. You should really take a few planned ME days to rest and relax. If his short term memory is bad, he won’t realize you missed one day here and there, especially if your daughters go and keep him busy. Kudos for taking him green smoothies, I am sure that is helping tremendously.

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