Sunday, January 5, 2014

Traveling between tandem stem cell transplants - Yes, it's possible! Best way to heal? MOVE

In 2012 when I was diagnosed with Multiple Myeloma, I immediately began treatment. When  discovered, I had 90-95 percent myeloma cells in my bone marrow and the T13 deletion. Though I was stage III at diagnosis, I was "lucky" in that none of the cancer cells had left my bone marrow and I had no signs of tumors or lesions on my body.

Nonetheless, I had to be treated immediately and aggressively. Initially, it was a massive cocktail of Revlimid, Dex, Velcade, and a million other pills. I then had my first of two stem cell transplants. To get a tandem transplant, the transplants must be done within six months of each other. Some chose to have the first transplant and then just a month or so later, do the next one. I just couldn't do it. Instead, I wanted a nice long break so I could feel normal, let my body recover, and just take back my own life for a bit. So I had my first stem cell transplant in May 2012 and my second four months later in September 2012. In between, my doctor told me to do something fun, but to be careful, and to avoid airplanes.

I had always wanted to do Amtrak across the country but I always worked and never had the time. This was the perfect opportunity. 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.

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. My parents and brother also went on the trip, which was good. I knew that I did not have the physical or mental capacity to do a trip like that on my own.

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.

I felt so good after that trip. I felt mentally and emotionally stronger. I felt the beginnings of recovery-- mentally, emotionally and physically. I then decided to get a third opinion at LDS Hospital and then a fourth opinion at Mayo Clinic in Scottsdale, Arizona. Did I want to get another transplant? my labs and biopsies were great. I felt great. My hair was growing back. The thought of starting from ground zero all over again was gut wrenching. LDS Hospital and Mayo both advised that they would not do another transplant on me. I decided that when I met with my oncologist, Dr Boyer, at HCI in late August, I would decline my second transplant.

And then I met with Dr Boyer and he reminded me of my high risk, aggressive myeloma and why they felt it was the right course of action. And I trusted his opinion and I did that second transplant in September.

The second transplant was easier than the first. I lost all my hair again. In fact, one night I got out of bed in the middle of the night and simply shaved it all off. I developed no mouth sores when I did the worse of the chemo. I stayed in the clean apartment in Salt Lake City for a week. I engrafted two days earlier than expected. I never felt horrible on the expected worse days. I was so mentally bored that I had my dad drive me through the canyons where we watched the leaves changing colors. I watched TV and stared at the walls. I felt pretty good. I ate well. Instead of eating lots of canned foods and frozen pizzas like I did the first time around, thanks to the severe food restrictions those of us with no immunity have, this time I grilled up lots of fresh fruits and veggies and ate really well.

When I engrafted two days early and was able to go home, I almost cried I was so happy. I came home and didn't tell the girls prior. When they came home from school and there I was, they both screamed. Siena had made me a huge heart get well card and decorated my room. It was so sweet.

The recovery from the second transplant was tougher, though. After the first transplant, I felt pretty good after a few weeks. This one left me feeling extremely fatigued for a very long time. Nonetheless, I pushed myself. I started doing Bikram Yoga within a few weeks of transplant. I started doing power walks with William. One day, we walked almost seven miles and I didn't even realize it. When we finished and he told me how far we had walked, I teared up and he just hugged me. I was so happy and amazed at my body. And so very grateful. God had come through--  he had done what he had promised. He allowed me to get sick, which enabled me to finally leave an abusive marriage, but he had taken care of me on the other side of sickness. It was this incredibly huge and powerful understanding.

Transplants are so hard but, for the most part, we survive and thrive through them. There is a light at the end of the tunnel. Our bodies heal. They may never be the same again, but we learn to live with our new "normal". Because I'm still in maintenance therapy and it has a cumulative effect, some days I'm still really super fatigued. Like today. As soon as I post this, I'm going to watch football with William while lying on the couch. I'll probably sleep most of the day. And that's ok. Listen to your body.

I remember when I first entered treatment and I was talking to a fellow Myeloma warrior named Steve. He was on his way back from skiing. I couldn't even fathom skiing. I felt so horrible and awful.
"Don't worry, Liz," he said. "You'll be skiing again next year. I promise."

And I did! Less than a year later, I was skiing with Morgan, Siena and William.

As my first treating oncologist, Dr Raja, said, "Myeloma is highly treatable. You'll be around for a long time. But the treatments aren't fun."

She was so right on that one! But I'm getting better and this disease will not claim my life.

Just keep moving!