Grieving

I've been grieving and writing and grieving all week.  I'm not sure why this scan and bone marrow biopsy appears to be so different but it holds a lot of weight on my heart for a few reasons.

I think about my life often and reflect.  I think about how much I have accomplished in almost thirty years of living.  That my bucket list that I created when I was first diagnosed has been fully met, and even before.  I was a teacher.  I played college basketball.  I traveled to Greece, I completed my Masters Degree, I counseled children of domestic violence and sexual abuse (if only for a year, I did it), I fell in love with a great man and continue to build a life with him (not on my bucket list but what a great added bonus! I'm sure he thinks so as well ;)).  I've built some of the best relationships I've ever had in my life, my friendships and my relationships with my family are strong and unwavering and I found the strength to let those that were toxic fall by the wayside.  I went to a place I never thought I'd travel to -- Hawaii.  I snorkeled.  I hiked a mountain in a national park (the great Mt. Rainer).  I traveled to the Northwest. I've lived in Jacksonville, Fl, Boston (several times), Doylestown, PA, and Montclair, NJ.  Some of these things are not even on my bucket list but were found along the way, and I am proud of my accomplishments.  If anything, I feel that I have squeezed more into the last seven years than most could have in their life.  I feel lucky, I feel grateful.  I have a beautiful life besides these horrid diseases that have decided to live in my body and because of that, I grieve.

When faced with more treatment, or a risky treatment such as a bone marrow transplant your thought process goes in two different places, even though there is a lot of gray area.  Let me back up for a second, the allo-transplant that we've all been talking about has a very high mortality rate.  Unfortunately there is a 30% chance of cure, a 30% chance of not surviving, and a 30% chance of surviving but relapsing.  In between these factors there is grey area.  Graft verse Host Disease is a huge threat to quality of life (when donor cells attack the host body), it can be a whole other disease on top of the cancer that can destroy the host body, it can be at different levels but totally demolish a quality of life.  There's a change of not surviving.  There's a chance of coming out of transplant and relapsing.  There are just a lot of scary, scary things to think of... when being faced with all of these treatment choices.

So, I've been grieving.  The reality and the weight of my future treatment decisions makes my heart ache over my beautiful life.  The life I have attempted so hard to create for myself personally and professionally, and although I know that I've checked off a lot of boxes on this bucket list -- I want more.  I want more out of this life, I want to create another bucket list -- a longer one, a more diverse one.  I want to continue the foundations I've built on my other list.  I want more.

But the scary this is, we're not guaranteed.  In our society most of us feel entitled to live til we're 80.  We feel that we have a right to reach that age, and those that aren't touched by trauma, illness, or death in general do not have to think about this.  I know, because before I was diagnosed with my kidney disease and cancer, I didn't think of dying.  I didn't think of my own mortality.  I didn't reflect on how many more years I have or how much I should try to fit into my life because you never know.... you never know.  

But now, especially when facing such a risky procedure or the option of one, who knows what the future will hold for me.  So the weekend before scans it only make sense to grieve over my life, I'm allowing myself to do so.  I have one amazing life, with amazing people, and amazing things.  I don't want to lose it. I want to build on it. Wouldn't you?

We go into these scans having no idea what they will hold.  My last scans were in March with nodes reaching from 4 to 6 cms.  Too large for my liking. That was after we discontinued Revlimid.  After two months of SAHA at a subclinical dose, my team does not feel as though this has made a huge difference.  Therefore, when I arrived back from Seattle we upped my dose to 300mgs (a normal dose), which unfortunately this dose did not cooperate with my body and major side effects ensued.  Now we face this scan with only a very small list of options left in O's thoughts, and an even smaller list of options if the bone marrow biopsy continues to result a deterioration of my bone marrow.

As I said, I grieve.  I grieve over my current life and I grieve over possibly the lack of quality of life for my future or lack of future.  At the moment I'm feeling fine, but we really have no idea what the results will hold or even what the future holds at this point.  Personally, I've never felt this anxious or nervous about scans before and truly appreciate the love, support, and understanding of everyone just listening to my fears, thoughts, and ramblings.

As always, here's to hopefully still having a list of options.
We'll know more from Dr. O on Monday.



Bekah