Where am I and how did I get here? It’s been almost a year since my life changed. Actually, it was a little over a year ago that I found out something was wrong. I just didn’t know how wrong…until D-Day. Diagnosis Day…July 16, 2013.
I’ve always been pretty healthy. By that I mean that I could do things like running 50 miles on my 50th birthday. I wasn’t always doing crazy things like that, but I’ve always had it in me. Nothing had really changed in 2013. I just had persistently swollen ankles.
I’m a runner and we can explore that whole thing later, but my first doctor visits in 2013 were to deal with my case of plantar fasciitis that was ruining my running life. Finally after realizing that both legs should not be swollen, I sought medical advice for that. I was in denial though, so it wasn’t until after being urged by family and friends.
Some lab work that indicated low protein in my blood led to my urine being tested. It was found to be full of protein. The nephrologist was the next step. I’ll spare you the frustration of trying to find a doctor with new health insurance.We had just switched from Kaiser when this all started, and had we not been pushy, I might still be waiting to be seen! I had a kidney biopsy in early July (exactly a year ago today as I write this!) and the results took an extra long time. Instead of getting them on the 11th, I waited an extra 5 days. I was frustrated. Which little kidney disorder did I have? What meds would I be on? Would it interfere with running? That’s all I wanted to know.
Finally they called and asked that I come in the next day. I ignored the sense of urgency in the nurse’s voice, because I just wanted to get in there and get this done. The appointment was brief. I had something called “Amyloidosis” and it was “hard to treat”. Later in the day I realized that’s a code word for “you’re going to die from this.” She had told me not to google it because it would scare me. I did, and it did. It turns out that she said that because most of the info on the internet is out of date. Treatments have come a long way. People live with this for a lot longer than they did a decade ago. Mine was found early while I’m still relatively healthy. So, that’s bonus points for me. But there is still no cure. It’s still probably going to kill me, eventually. Wow. That was not exactly what I was expecting to hear that day!
A bone marrow biopsy was done and I found out I have lots of bad plasma cells in my marrow. That means I have asymptomatic (or “smoldering”) Multiple Myeloma too. That’s a cousin of “Amy.” It’s cancer, and it isn’t curable either. Since the treatment is the same, no one made a big deal of it. They sort of forgot to tell me that the prognosis is way worse to have both. I learned that not too long ago from a published study.
So, I started chemo on August 12th. After 8 months, I got to have another bone marrow biopsy.. (They are super fun…not!) Although the “light chains” in my blood are in normal range now, indicating success on the war against “Amy”, I still have a bunch of plasma cells. We discussed continuing chemo, but my husband, Howard, who is my biggest advocate and cheer leader and saver of all things Kimmie, wanted more. And I was ready to go along.
That more is my next adventure. It’s a stem cell transplant. I’m getting ready for that now. It will happen next month.
Strangely enough, I have felt fine throughout this whole thing. I run, I workout in the pool. I go to spin class. Had I not been continually injured, I would have run a marathon or 3 in the last year. Again, more on that later.
I don’t get it. I’ll never get it. I’ve always been a “Why not?” kind of person, instead of “Why me?” So, I don’t walk around thinking this is unfair. ^&*## happens, and this is my %%&*#. It’s just weird because I feel really normal. Having said that, I do feel I was supposed to learn something from all of this. I think I have. And I’ll be sharing that with you in the posts to come.
Life is uncertain! Eat Dessert first!