AML: The Big Elephant in the Room

Now that I'm closer to home we're looking at the next phase of my treatment.  

As it is right now I'm a week from my last round of chemo.  So my counts are still falling and I need platelets and red blood infusions from time to time.  Just like any other round of chemo I'll have another week or so at the "bottom" and then we'll see just what kind of shape things are in.  Hopefully my beat-up bone marrow is able to produce healthy platelets and red blood cells.  We'll also see if the lymphocyte infusion I had on Monday provides a boost to my immune system recovery. 

Beyond that, I have pretty much exhausted my treatment options.  Through all my chemo treatments and the stem cell transplant we've kept knocking the leukemia down but it has never been quite enough. Unfortunately the byproduct of continually killing the weaker cancer cells is that we have created a very acute and drug/treatment resistant leukemia. The drugs that used to work well, just don't any more. 

From here things get kind of heavy and depressing.  To be honest I've struggled to figure out just how much I want to keep sharing about this experience.  It's a lot more enjoyable and in my nature to share messages with a bright side or something I can poke a little fun at.  I'm just not sure there will
be much of a bright side to what is coming.  I've come to the conclusion that I just as well finish the story regardless of whether the bad days outnumber the good days. 

Since my treatment options are limited we now start making decisions about palliative care.  In other words we start talking about improving my quality of life rather then curing my leukemia.  We're having conversations about pain management, blood product replacement and so on.  The good news is that I've got a doctor who understands that for me, the most important thing is limiting the amount of time I spend in the hospital separated from my family. 

So the big question is how much time.  The problem is that no one can answer that one for me.  Optimistically we would all like to have this turn into one of those situations we all hear about where the doctors say that I had 3 months and that was two years ago.  Realistically, when you look at the nature of what I am dealing with that seems quite unlikely.  I guess with the rest of the awesomeness I have to deal with, I make some pretty wicked awesome leukemia cells. 

As long as my body is able to recover enough to produce platelets and red blood cells I have to think things will be easier to manage.  We'll be in a mode where we try to prevent or treat infections and replace blood products as needed.  At least that seems fairly familiar and certainly doable as an outpatient.  At some point however not treating the leukemia means that the cancer cells will overtake the healthy ones.  So the question remains...how much time.   

With no way to answer that we take things from here day-by-day and are making preparations accordingly.  Andy and I are happy to be home. The kids are happy to have me (almost) home. I am going to enjoy every moment I am given.  Even though I am back, I'm still recovering and it is frustrating knowing that time may be limited but I am also held back a bit because of my last chemo treatment. 

We still want visitors. Friends and family are so important to us. I guess by sharing this post we don't have to dance around the big elephant in the room. We don't want people to distance themselves because I am home and they think we want more family time.  We'll find the right balance and I guess I'd rather have people continue to rally around me now that I am home to enjoy it. 

I am so thankful for the unwavering support we've received from friends and family.  It has been a long road.  With treatment over, this particular journey is nearing an end.  I have accepted it. I'm okay with it.  Prayers are still needed.  I'd love to have my sense of taste straightened out if anyone is taking requests. (That's right, of all things, I just want food to taste like food again).  I'll continue to keep writing and sharing memories.  It's a good way to cope with things. 

The fight continues...Miracles happen...