Pat Killingsworth Pat Killingsworth

Happy Birthday? Reflections two years post-transplant

Things have been hectic and I’ve been out-of-touch this week.  I’ll explain why tomorrow.  It must have been crazy for me to forget my “birthday.”  It was two years ago Monday that my stem cells were infused back into my body following high dose chemotherapy.  In other words, this is the second anniversary of my autologous stem cell transplant..

Transplant staff make a big deal out of Day Zero; another name for this fateful day.  Obviously for me it never stuck.  Maybe if I had undergone an allogeneic  (donor) transplant, it would be a bigger deal.  I have interviewed a number of allo patients that speak of feeling different or even being “violated” on their Day Zero.

I think I understand.  It must feel  strange knowing someone else’s stem cells are soon going to form a brand new immune system from a stranger.

3 weeks after my SCT summer of 2011

3 weeks after my SCT summer of 2011

But for me it all seemed to be much to-do about nothing.  Besides, I was already nauseous following my bone marrow being carpet-bombed by two rounds of melphalan.

Two years later I still feel some of the effects of the procedure.  My stamina has never fully recovered.  Although to be fair, it is hard to tell if it’s the transplant or consolidation and ongoing maintenance therapy since then that holds me back.  My immune system has recovered fairly well.  But I do get more colds and mouth sores (thrush) than I used to–and the colds are much more severe, too.

Was it all worthwhile?  Well, I never did get much benefit other than a developing a clear re-sensitivity to Revlimid and Velcade; a very good thing!

Would I do it again?  I’m not sure that’s a fair question.  Of course, knowing what I know now , maybe I would have/should have skipped it.  But considering all the writing I do about it all, the experience was invaluable.  And at this point it’s all become part of my identity and who I am today.

I’ve never experienced childbirth, of course, but I’m guessing undergoing an auto transplant is a lot like that; you’re sick and it’s painful and you swear that you’ll never do it again.  But after a few years those memories fade.  If you were to ask me today if I would go through it all again with the hope of a different, better outcome–and if more than just melphalan was used as part of the high dose chemo mix–my answer would be “YES!”  As a last resort I would consider it.  Heck, I would consider undergoing a tandem auto/allo as last ditch salvage therapy if that was my best remaining option.

Because despite losing our dear friend and hero, John Knighten ,on Sunday,  there seems to be a measurable shift back to trying allo transplants as the ultimate salvage therapy.

But that’s another, longer story that I’ll save for another day.  Today, right now, I’m thankful to be able to look back and reflect on my pre and post transplant journey.

It’s been difficult, but it sure beats the alternative!  Life is good!  Difficult or not, I’m planning to and preparing for being around a while longer.  After all, I still haven’t found enough volunteers to help keep MMB going after I’m gone.  Motivation enough for a stubborn multiple myeloma writer/survivor like me!

Feel good and keep smiling!  Pat