A Window Has Opened

Hope is believing that even when the path changes, the story isn’t necessarily over.

 Almost 10 years ago, I was diagnosed with my first type of leukemia- myelofibrosis. There is no cure for myelofibrosis. No treatment either. They are working hard, but all they have found so far are a few drugs to help treat symptoms. I am currently on one such drug, which is trying to keep my spleen at a manageable size and costs over $5000/month!

Myelofibrosis is also progressive, which means it is slowly and steadily increasing the fibrotic material in my bone marrow. There is no way to know for sure how fast it will progress, but 10 years ago I was given about 5 years before intervention would be needed. Thankfully, I’ve doubled that time!

So, in the early stages of myelofibrosis, you are in a “watch and wait” situation. Blood work regularly. Constant supervision by a hematologist to keep a watchful eye on ALL things. I have been blessed to have a spectacular hematologist at Oakville Hospital named Dr. Andrea Lee. She has held my hand through the past 9+ years. She has consistently given me comfort and information and has been a wonderful sounding board for all my (not-always- so-intelligent) questions. I look forward to my appointments with her more than you can imagine.

At some point in the “watch and wait” phase of the disease, things start to head in the wrong direction, and a window opens up. This window is the time in which a stem cell transplant can be performed. A stem cell transplant is a potential “cure” for myelofibrosis. But it, in itself, is a very difficult, life-altering treatment to endure… more on that later.

I know, I know I previously said that there is no cure for myelofibrosis, and now I’ve said a stem cell transplant may indeed be that… by replacing my stem cells with a donor’s cells, I could end up with little to no fibrosis in my marrow. BUT … some cells with the mutated gene may stick around and cause myelofibrosis to recur.

I’ll describe the stem cell transplant later … suffice it to say …  it is NOT fun.

Back to the window … it opens when things start to go bad in the patient but closes when things get so bad the patient will not survive the transplant itself.

Things that are happening to me that opened my window:

1. My hemoglobin dropped below 90,
2. My spleen grew larger despite being on a medication that is supposed to shrink it.
3. My bone marrow biopsy showed 3/3 fibrosis (not good)
4. A lot of other things are showing up in my blood work/bone marrow. I have never even heard of most of this stuff before (can you say proliferative megakaryocytes with atypia??).  Hematology is a tricky business!

My case has been presented to all the smart minds at Princess Margaret Hospital. Unfortunately/fortunately, they could not reach a consensus on whether to move forward immediately.

They have decided that yes, my window is open. They will start the search for a stem cell donor. They will keep a closer eye on certain blood test results. They have plans to boost my hemoglobin with an injection I could give myself if this becomes necessary.

I have an appointment at Princess Margaret Hospital in November. We will have a very large conversation then about our plans. I believe I will very much have a say in when the trigger is pulled.

The good news – I feel good. By looking at me, no one would ever know what is going on inside my body (unless they are following me up a hill or up a set of stairs … I am very slow!) How I feel is a major consideration going forward because I may not feel this good again after the transplant. This can really mess with your mind!!! We have this treatment for you but …. ????

I have been very fortunate to have had 2 wonderful European vacations during this time. I was and always will be so thankful to have had those trips to take my mind off what’s coming. It’s hard to worry about yourself when you are figuring out what beautiful thing you are going to see or do the next day!

I raise a glass to my travel companions – Angela, Sarah, Steve, Lorraine, John and Kevin (we raised MANY glasses together).I am also thankful to my mother, who is visiting us now. It is she who said, “You better get writing – a lot of people want to know about you”!  She’s a gem.

I know I sound very positive and in control, but please know this has been a rocky few months for me. And I am terrified to undergo a stem cell transplant. But, as I saw written on a note in the last fancy-smancy hotel we stayed at in Portugal, ‘THIS IS THE BEGINNING OF A NEW CHAPTER IN YOUR LIFE STORY’.