It’s been almost a year since I’ve written a blog. And it isn’t because I have not wanted to. I could tell you that it is because I’ve been so busy loving my children and husband. Or that I haven’t had time because I’ve been focused on taking care of my home, my family and myself, or any number of reasons that are absolutely true. But, those reasons have not kept me from writing a blog. Just like the apartment bed I’m sleeping in right now, my blog is a placeholder for the scariest, most painful part of my life, and I had no desire to go back there.
But here I am. Both in this godawful bed with 7 air conditioners buzzing right outside my window and writing a blog at four in the morning because I can’t sleep. In Little Rock, Arkansas. Land of wonderful restaurants, beautiful river trails, quirky little galleries and the University of Arkansas Medical Sciences/Myeloma Institute for Research and Therapy. My home away from home. The birthplace of my darkest moments. But also the birthplace of my only hope for survival.
Most everyone knows that I was diagnosed two days after Christmas, 2012, with a cancer called Multiple Myeloma. I had never heard of it, and why would I? Statistically, I wasn’t supposed to get it. But I did, and I went to Little Rock to find my hero, Dr. Bart Barlogie. He had me in remission before my first stem cell transplant, and after my second transplant I was considered MRD Negative. That stands for Minimal Residual Disesase. So, in the most detailed machine, one that looks at over 4-5 million events (cells) they could see no myeloma. And still, today, I am MRD Negative in complete remission. *Sigh of Relief* Or so you would think. Afterall, I’m writing a blog. So it can’t be all good news, right?
Every four months or so I come back to Little Rock for testing. It’s no big thing, just here a few days, lots of scans, blood tests, see the doctor and go home. This week was my first week to meet my new doctor, Dr. Van Rhee. He does all the trials on the Immunotherapy treatments. Very cool stuff. So I was happy and excited to meet him. Plus, mom and I had some burning questions about my genetic profile, kareotype, etc. These were questions we couldn’t get to Barlogie before he moved out to New York.
So, we were sitting in the little exam room and in walks the cutest, sweetest personality, maybe Sweedish, man and introduces himself as Dr. Fritz Van Rhee. He had the SOFTEST hands. Ank kind eyes. I liked him immidiately. He sits at his computer and pulls up what I recognize as my PET scan. Then flips through my chart and starts quickly going front to back to middle, then looking at the screeen, then flipping some more. Then he lands on one of the pages that mom and I wanted to tald to him about. It’s called a Foundatiuon One Report. It looks for mutations in my disease. He starts reading, looking at my PET, then stops and looks at me. Oh Crap. I realize right then that I’ve gotten much too used to good news. It’s time to tighten those facial muscles and engage my core or I might crumble right then.
“Have you seen your PET?” he says. I say no, that it has not shown up on my MyChart (our online system to review records). I glance over to mom and say, “This is why it wasn’t on there.” Dr. VanRhee is looking at his compurter and rotating my 3D body around and around. “You have a mass here.” he says. “No, that’s a lymphnode that I’ve always had, you can check my reports.” I reply. I can feel a nervous giggle working it’s way up my esophogus. “No, your node is here (he points), this mass here (he points…to a mass I’ve never seen before). And there it is. I can see my 17 months of remission explode into a million beautiful lights and fizzle out on the cold linolium floor.
So now comes the serious talk. I will be taken off protocol immidiately. For those of you that didn’t know, I do maintenance chemotherpay daily. I would have continued to do that for 3 years. That has been stopped and I have been given a regimine of Kyprolis, Monday and Tuesday. Dexamethasome, Monday and Tuesday. Revlamid for 3 weeks on, one week off. A double dose of Kyprolis. I don’t have any friends on that regimine. But I don’t say that. Remember, I’m working really hard to crumble because I know what’s going to be said next.
“We are going to biopsy this mass, Stephanie” Dr. Van Rhee says. “We need to know immidiately if there is myeloma there.” But, I’m confused at this point. “Wait a minute, I don’t have any myeloma cells in my marrow and I’m MRD negative. How can there be myeloma cells in the mass?” I say as I think I know the answer, but am probably in a bit of stupor and denial.
“This happens many times in relapse (not that word not that word not that word). You may have become Nonsecretory. You have no M Spike, no diseased marrow, no protein in your urine. You can grow lesions on their own. That is why we image you so much even though you are in remission. Had you not had the PET, we might not have found this until it was too late.”
I go inside my head at this point, and the rest of the visit is just prescriptions, describing my new chemo side effects, questions about home life and working, to which I replied that my homelife was my work. His response to that was “Good”. I can’t help but think of my nonsecretory friends. Many of them are already gone. Enter the stone face panic. I’ve become really good at keeping that in check until I’m someplace private.
The next dreaded thing to do is call Lee. Everyone who knows me knows how much I absolutely adore my husband. He is my best friend, one of only 4 people on this planet whom I am comfortable enough with to walk around without a hat or scarf when I had no hair, and we took our vows seriously. Every last one of them. Which makes this very difficult to tell him.
It was by far the hardest part of my day.
So here I am, now 5 in the morning, waiting for UAMS to call and tell me they were able to find a spot where they could sqeeze me in. If they cannot do it today, mom and I have to drive home and come back in a few days. Ugh.
After I’ve been biopsied, started my new chemo rutine at home and finished my first cycle of Kyprolis I have to go back to UAMS. I was so hoping they would tell me this time that they are confident in my health, that I’ve done great, and that I don’t havve to come back for 6 months! That is what should have happened. Instead I have to come back in 5 weeks.
So, Friends, I’m sorry I haven’t kept up via my blog. I promise to do better. I’ve met several people that have found the doctors at UAMS through this blog, so I believe there is a purpose other than my own. But please pray for me. Please pray that the core biopsy comes back clean for no myeloma. That I am not a nonsecretor, that I’m still in complete remission and am MRD Negative. Please pray for the strength of my family, too. It shreds my heart to know that we may be getting ready for round two.
“29 He gives strength to the weary and increases the power of the weak. 30 Even youths grow tired and weary, and young men stumble and fall; 31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:29-31
