How did you spend time between tandem stem cell transplants? I went on vacation!
BY LIZZY SMITH When we myeloma warriors are undergoing rigorous treatment for myeloma, especially when that treatment includes a stem cell transplants (or two) your whole life gets put on hold. Doctor appointments, medications, and tests take top priority and it is incredibly time consuming. When I was diagnosed and first entered treatment, I was at clinic sometimes five times per week. It was literally a fulltime job. I had got a tandem stem cell transplant and in between the two, I really needed to do something “normal.” I wasn’t even sure what normal felt like anymore. I just knew I had to do something fun, for me, and something that took me far away from myeloma. I took as long a break as we thought wise between my transplants. And when I got permission from my doctor to go on vacation, I jumped at the opportunity. I had always wanted to do Amtrak across the country but I always worked and never had the time. Here was my chance. So in late June, we purchased Amtrak passes that enabled us to get off and on the train over a period of 21 days and make as many as six stops. So that's what we did. I took my two young daughters, my mom and dad, and my brother with me. Departing from Salt Lake City at 3:00 AM wasn't easy. I was very weak, I had to pack a ton of medications and two wigs and beeny caps, I had to take syringes, in addition to all the other things one must take on a long trip. Plus I had the two girls. Since we would spend a few nights sleeping on the train, we also had to pack up some bedding and the DVD players. What is cool about Amtrak is there is plenty of legroom and most every single seat has outlets. So the girls and I all took an electric blanket and a travel pillow. Thank goodness we did. The trains were frigid. It was like 500 degrees and humid outside and maybe 52 degrees on the train. No kidding. So at 3:30 AM, we got in our seats, cranked our electric blankets on high, put on fuzzy slippers, and fell asleep as the train rocked quietly back and forth. I'm not sure I ever slept so soundly. By the time we woke up, we went down to the bathrooms and brushed our teeth and got dressed. I had to quietly inject myself in the stomach, which was fun in that tiny little bathroom. While we made our way to Chicago, we ate lunch in the dining car, read books, watched movies, and went to the observation car and played games. It was actually very peaceful and fun. When we got to Chicago, I realized that I was just worn out. I felt major fuzziness, which I knew was from the Dex I was taking. But I also quickly realized that if I was going to sit all day, the fuzziness was horrible. But if I was going to be up and walking around, the side effects declined to almost nothing. Wow-- getting up and moving around made all the difference in the world. No one told me that! So in Chicago, we checked into our hotel room and went sightseeing. It was incredibly hot outside but we got on the double decker tour busses and saw the city by foot and bus. I've been to Chicago probably 20 times but I had never seen it like that before. The girls were great troupers and we had a blast walking up and down Michigan Avenue and shopping. We even took a barge tour around the city one of the nights we were there. In the evenings when it was dark, the girls went swimming. I was not allowed to be anywhere near public swimming pools so I took a peaceful bath instead. I thought it was remarkable that, here I was just weeks past my transplant (which is really traumatic on the body) with a brand new immune system and I was doing really well! We stayed in Chicago for several days and then got back on Amtrak and went to Washington, DC. We rented a mini van and were there for five days, including 4th of July. I used to live in DC and I love the city. I loved showing my family and daughters the places I lived and my favorite museums. We went to the Smithsonian, Congress, Supreme Court, Union Station, all the monuments, Mt Vernon. We rode the metro. We went to the National Archives, where we stood outside under the hot sun for 30 minutes before we could get in. I swear, I thought we were all going to melt. But we saw the Constitution and Bill of Rights. We drove to Gettysburg, Pennsylvania, and stopped for lunch in Maryland, and took a gajillion pictures. Again, as long as I was up and walking around, I felt pretty dang good. If I was sitting for long periods of time, I just needed a nap. We got back on Amtrak and headed to New York City. We stayed at a lovely boutique hotel next to the Waldorff Astoria. We sent and saw the 911 Memorial and shopped and saw the Statue of Liberty and went to Magnolia Bakery and everything else we could fit in over the next three days. We went back to Chicago for a few more days, and then came home. I wore my wig everywhere I went. On the train, at night I would slip off my wig and wear my pink beany cap. I don't know if anyone noticed but I didn't care. I was warm and comfortable. I injected myself in my stomach every morning and evening so I wouldn't get blood clots. I took all my medications without missing a dose or day. And I didn't get sick. By the time we got home, I had lessons learned to share with my nurses. Tell the other myeloma warriors to MOVE and MOVE around as often and as much as they possibly can! That was my advice. Sitting and resting was fine, but sitting and resting too much didn't help me feel better or recover faster one tiny bit. It feels counterintuitive. When you feel crappy, it’s tempting not to go from couch to bed and back to the couch. But, at least for me, the best way to feel “better” is to get up. Yoga, walking, hiking, shopping—anything. Sometimes it’s hard to imagine the luxury of “normal” life in the midst of heavy duty treatment but it is possible.