The Myeloma Roller Coaster: Treatment, Recovery, Live. Repeat.
BY LIZZY SMITH Today I feel compelled to write about the Myeloma Roller Coaster, one all of us in the myeloma world know too well. It is filled with highs (treatment is working, remission!) and lows (relapse, bad numbers, compressed spine). Each visit with the oncologist can mean great news, or not so great news. How do we cope? For me, it is one day at a time. I try to celebrate great news for what it is-- great news! And I try not to sit waiting for the other shoe to drop. When I'm not in the midst of heavy duty treatment, I try to distract myself a lot-- I go on trips, I go skydiving, I work on this web site... anything to keep occupied. I've experienced every emotion since I was diagnosed in January 2o12, from stunned, incredulous, terror, confidence, reveling in my warrior status, and horrified at relapse and feeling horrible. And this is a journey we all must take in our own way, armed with great doctors, medicines, and our support community. It's not easy. I call it a road, or a journey. There are bumps and curves, and sometimes unexpected beauty. There is ugliness, too. Which brings me to my latest section of traveling down my own Myeloma Road. I had a rather tough auto stem cell transplant (SCT) this past December 2015. It was my third since diagnosis (the first two were tandem SCTs in 2012). You can read about my third SCT journey in these articles: Myeloma Survivor Lizzy Smith Enters Stem Cell Transplant #3 With A Skydive SCT Postcard From the Edge: Surviving My 5-Day Hospital Stay For Myeloma Hospital Food, Cancer & Healing. Attempting the Impossible A Personal Story of Surviving My Third Stem Cell Transplant It was a really hard November and December. I got married and literally, the very next day, found myself in the ER. The "sickness" journey began. I was not happy. Fast forward to yesterday. It was my post SCT follow-up appointment with Dr. A (day +60). I was dreading it. I did not want to go to the doctor and hear how the transplant and my re-staging tests went. I wanted to continue my life of near-normalcy, to forget I had cancer. But there I was, feeling all kinds of sick and nervous. Dr. A and my PA, Mary, walked in. Just by the looks on their faces, I wanted to throw up. They looked sad. But... the news was.... Fantastic! Stringent Complete Remission. A better-than-expected response. We learned that I am still very receptive to existing treatments. Time to celebrate! My mom was crying, my dad had tears in his eyes. And then I felt... fear. I remembered feeling this way after my first tandems were over. What do you mean I wasn't going to be in clinic nearly every day being monitored? There was something empowering about being in treatment. And now... just maintenance? Getting markers done every three months? That wasn't enough! It took months to settle into "life" without all those appointments and meds but when I did, I started really LIVING. I did not know what "life" without daily cancer treatments would look like for me but discovering it was awesome. I finished up my divorce, started dating again, began writing my story on my blog (www.lizzysmilez.blogspot.com), met Jenny and helped her launch this web site, and started traveling like Crazy Woman. I hiked, went skiing, visited museums-- and dragged my daughters along with me. We started having a lot of fun! I got remarried... And then I relapsed. When I had to start treatment again, I was angry. I resented my doctor (surely this was his fault!). I hated the fact that I was bald again and without eyelashes. I skipped my birthday, Thanksgiving and Christmas because I was in the hospital throwing up almost every single day for two months. I was cranky. One day I called up Dr. A's office and said that I was "this close" for not showing up for Melphalan and transplant. I did d-Pace and that was enough. I was over it. Dr. A talked me off that cliff and I ended up completing the very awful regiment. And then Jen, my nurse, offered up a really important pep talk: "We take control of your life when you're doing a stem cell transplant. But remember that it does end, you get better, and then you get to start living again. It will happen, it's just a few months." She was right. It did end. I did start feeling better. And now I'm in remission! Fear? Yes. But the world is, once again, my oyster. Now what? (Besides weekly Velcade injections and dex as part of a maintenance routine.) This morning I was in the shower and broke out into a huge smile. I got butterflies. Life was MINE! Traveling Lizzy was back. In a few hours, Hubby and I are flying to Florida for a much-needed vacay. Last night, my best friend, Julie, talked me into buying plane tickets and meeting up with her in Las Vegas in a few weeks. Why not? We are both taking our oldest daughters and while they're at a Justin Bieber concert, we're hitting up a spa, then finding a great bar and knocking back a few drinks. In early April, I will gather up William and the girls and we are going to Costa Rica for a week. Zika virus? Small risk but, I suppose, I'd rather get sick from Zika while on a great vacation instead of sitting at home waiting for cancer to hit again. I'm planning summer trips to Mt. Rushmore and New Orleans. While in Louisiana, we'll check out some great voodoo shops and cemeteries and gorge on Cajun food. Yes, life is looking normal. Make that better than normal. I'm eating again, refound my "taste" for coffee (during chemo, I couldn't fathom drinking it-- the smell alone made me gag), and I've gained some of my weight back. I am cooking and baking and cleaning. I am finally exercising again. For the first time in four months, I went to the Rec Center and went for a walk/run and did some major stretching afterwards. I am really sore! But, truly, it felt fantastic. When we get back from Florida, as part of Muscles for Myeloma (join us!), I am working out every day (except weekends). I think I will also start back up with Bikram yoga. It is time. After all, myeloma is a journey, not (yet) a destination. Right now, it's time to start living again--living Big and Grand. I intend to enjoy every minute of it. It sure beats the alternative.