It’s been so long since I last blogged. Nearly every week at least one acquaintance asks me when I will post an update. It’s not at all that I don’t want to, it’s much more complicated.
I had an opportunity nearly two years ago to be a patient expert on a mixed panel for PatientPower. They are a national patient advocacy group that help patients communicate with big pharma, navigate the clinical trial process, figure out ways to make our ‘New Normal’ more normal, etc. On one of these panels I was asked why I stopped writing my blog. Totally caught off guard (it’s strange to be recognized for something as existential as a blog), I stumbled a bit and had to really think about my answer.
In the past, words and thoughts to write down came on their own. In my own research there was so little information available to and about the young, female, Myeloma patient that my thoughts just found the page. Easily, orderly, and painlessly. That wasn’t the case anymore. Especially the painlessly part.
About the time that I relapsed in 2017 my attitude began to change. I became much more a realist about my own disease than an informant to the newbies that desperately needed my help and the information I had to share. I was finally being swallowed into the hole of, ‘Me, Myself and I’. For the first time in my life, it became a chore to write about ANYTHING.
Over the next several months I needed to prepare myself and my family for my third transplant. I had relapsed, and as Dr. Van Rhee said, ‘Any amount of myeloma is too much Myeloma in the body of a 39 year old’. Definitely true. I’ve unfortunately lost way too many friends to the ‘lets Just wait and see what happens with these numbers’ approach to treating this monster. And by lost, I mean dead. Way too many.
In 2014, I completed tandem transplants under the Total Therapy protocol. Those both consisted of DVT-PACE with Melphalan. I swore I’d NEVER do a transplant again. Whoopsie! My medical team at UAMS Myeloma Institute in Little Rock decided that my best bet to conquer this new myeloma would be what is called a BEAM transplant. We would do it at the start of the new year, 2018.
This transplant took about 5 weeks of living in Arkansas. During two out of those five weeks in January/February, I have a little bit of memory. I wished I had stuck to my ‘No More Transplants!’ guns. Either that, or I was praying for God to take me, which he nearly did…twice. It was B.A.D. I won’t get into the details, mostly because I don’t remember, but also because it was one of those situations where everything that can go wrong went wrong. I had the Rapid Response team following me, sepsis, DIC, a body wide candida cruxi infection, flu B (with a high temp of 106!), etc. God is amazing, though. I have zero memory of the worst part. He protected not only my body, but my mind, as well.
Knowing only a handful of myeloma patients that survived a third transplant, I worried that I was making the wrong choice. Especially because it was a BEAM. That had me remembering friends from my early days at UAMS that passed during their BEAMs. I made it though, and I would still recommend it to someone in my situation.
I say that right now, Today, as I’m sitting on my hotel bed in Little Rock. I’ve had my two full days of testing for restaging. I will say that much has been difficult since the last transplant, but it’s really been tough since at least 2010. Things just change by degrees, you figure it out and move on. Like Today. In three hours I’ll be meeting with Dr. Van Rhee to determine my fate. I hate these meetings. Don’t get me wrong, I love my doctor. I’m actually in awe of him, but the build up, then crash, of determining whether or not you’ve relapsed just sucks!
So my friends, think of me over the next few hours. Pray that God gives me just a little while, before my next testing/restaging, to be cancer free. Because if I know one thing, I know this: No.More.Transplants.For.Me!
And, maybe I’ll blog a little, too.
’fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning it’s shame, and sat down at the right hand of the throne of God’ – Hebrews 12:2