Friday, August 8, 2014

From www.myelomacrowd.org: Careful what you wish for!

I used to want to rest. Now I have to.

I used to want to rest. Now I have to.

The old adage is true: Careful what you ask for!

Back in my prior life, pre multiple myeloma, I had a very stressful career, was in a failing marriage, had a home and vacation home, two young children, two dogs, and more responsibility than I care to think about. Each day was a struggle and I was exhausted and overwhelmed pretty much every single day. I used to daydream about just being able to rest and sleep. My idea of heaven was a hotel room, no children, no responsibilities, a TV, a bathtub, a book and room service. If only!

…And then I was diagnosed with multiple myeloma. I went on medical leave with my employer, left my husband and filed for divorce, packed up my two daughters and as many belonging as I could fit in our Jeep Commander, put the cat in a carrier, and drove from San Diego to Salt Lake City, Utah. We moved into my parents’ basement and I entered treatment at the University of Utah’s Huntsman Cancer Institute. I immediately began being prepped for a tandem stem cell transplant.

A few months later, I got my “wish.” Here I was, in a “clean apartment” just a few blocks from the hospital. Actually, it wasn’t an apartment, it was a Marriott hotel with a small kitchen. I had no immune system and had just received my stem cells back into my body. I was awaiting my body to recover so I could go home and let the healing process begin. I was in that hotel, my children were at home some 35 minutes away, I had no responsibilities at all. I had a TV, a bathtub, a book, a stack of magazines, a flat screen TV and DVD player, and a bathtub. Room service (which I couldn’t eat, thanks to my not having an immune system that was functioning) was just a call away. Instead, I had a refrigerator loaded up with all the processed, pre-packaged foods that one could ever want. Frozen burritos, pizzas, canned soups, pickles (which for whatever reason, I craved like a drug addict needing a fix). I did buy lots of fresh fruits and veggies that I cooked up beyond recognition, but at least they weren’t canned and loaded up with extra salt and chemicals.

The problem was that I was so bored that a near panic began to set in. I felt closed in and isolated. I could sleep, read and watch as much TV as I wanted. I could Facebook and surf the Internet and call all my friends. But, really, the only thing I wanted to do was take baths, watch TV, munch on snack foods (yes, I got the munchies during my transplant and gained weight, go figure), and channel surf. I desperately wanted to leave but my body had no energy. Getting out of bed took serious concentration. My mind and body were not synching up and I hated it. One morning, I woke up nearly crazed. I had to get out of that hotel room. But I didn’t know how I would find the energy to get up and get dressed.

I concentrated on one thing at a time. Get up, brush teeth. Check. Wash face. Check. Put on clothes. Check. Put on wig. Wake Dad up (my caregiver). Find shoes and put them on. Check. Take loads of pills. Check. (Getting those pills down my throat was not easy. Though I had no sores on my mouth, my esophagus was clearly inflamed because eating was easy, swallowing liquids and pills was harder.) Put on mask that I could hardly breathe in. Check. Walk to car. Check.

My dad and I drove through the beautiful Utah canyons around Bountiful, Utah. We found a beautiful neighborhood and admired the homes. I craved a soda but I stopped myself from indulging. Instead, I had my dad go into a convenience store and buy me a bottle of Smart Water. We talked. And getting out of that hotel room for a few hours and sitting in the car (with the windows rolled up) was a welcomed respite. I had to get out of that hotel room and see people and be reminded that life outside of myeloma existed. It helped.

We went back to our hotel room and I took a long nap, watched some Dr Phil, ate a bunch of pickles, and later, we drove to my daughter’s soccer game. I couldn’t get out of the car but it meant everything to my daughter to know that mom was in the vicinity.

Not everyone can do what I did during transplant. Everyone’s body and stamina level is different. I had extreme fatigue– mentally and physically. But I also needed to get out and do things. All that rest I once dreamed of in my prior life? I suppose that, in reality, it just isn’t me. Even today, some two years post transplants, I still hate to rest a lot. I get my extreme fatigue days, usually two to three days post dex, and I need to sleep. I allow my body that rest. But usually, I push myself through that fatigue. I have found that if I sit too much, I don’t feel better, I actually feel a lot worse. I discovered this on a trip to Washington, DC between my two stem cell transplants. If I sat and did nothing, my fatigue and “strange” feelings of “fuzziness” never went away. But if I got up and walked and did site seeing, those side effects almost disappeared. Which is not to say that I recommend doing anything crazy. Rest is good. So are naps. But so is moving around as much as you can. I push myself. Do I push too hard? Perhaps. Perhaps not.

But during transplant, the mental and physical fatigue were intense. Sleep and room service and a TV were not all that I had once dreamed of.  Go figure. How did I get through it? My favorite TV shows, Vanity Fair magazine (cover-to-cover, though my dad bought me the issue in Spanish and had to go back to the store and get me the English version), catching up on Mad Men via DVD, and taking naps. Day after day. I actually began to look forward to my clinic visits and lab work. On my second transplant, I actually engrafted a day early and I knew it. I knew my body had started to recover. When the nurses said I could go home, I wasn’t surprised at all. In fact, I believe that I engrafted the day prior, I just didn’t have my blood work drawn that day. When I got home, the first thing I did was go to the spa and get a 90-minute facial. My skin felt like a withered prune. I was home before my children got back from school. When they did, I could hear their “Mommy’s home!” shout. They saw my car in the driveway. Since they weren’t expecting me home a day early, it was a welcomed surprise. They were ecstatic. Hearing their voices made me ecstatic.

The path to feeling “better” wasn’t that easy. My heart often pounded by simply walking up the stairs. Short walks around the block left me exhausted. My brain just didn’t function that great. Concentrating on sentences and verbalizing thoughts that were in my head was a struggle. I became cranky easily. But each day got just a bit better. Two months later, I went skiing. I couldn’t believe it– the year prior I had just been diagnosed and I felt so horrible. While the day of skiing left me exhausted beyond belief, the fact that I did it was amazing! One day, I hiked a big trail. Another day, I took an eight mile walk. Progress!

I still haven’t gone back to work yet. I am on maintenance therapy that includes weekly Velcade and Dex, and a daily capsule of Thalidomide. I have major chemo brain. Some days, I need to sleep or simply be horizontal for a few hours. I get a cold every four weeks. If someone is sick, me too! I need to have flexibility and time to concentrate on my health. I try to eat really healthy, though I over indulge too often on cookies and fries (though not together!). I do Bikram yoga from Fall through Spring. I do power walks. I try to sleep eight hours a day or more. I try to stay positive. I use lots of alternative therapies to combat side effects that include some neuropathy in my feet, insomnia, and stress. I write, journal and blog because I love it and I do it to help others. I travel, because life is about creating memories and learning new things.

This myeloma journey has been quite the surprise. I have learned a lot about myself. I have learned I’m stronger than I ever thought. I am resilient. And I am an optimist. Those traits have served me well thus far in my fight to get and stay well. A mind-body connection? I strive for that every day. I often talk to my body. I remind it that we have to fight cancer cells together. And my sleeper myeloma cells? I talk to those, too. I tell them that if they proliferate, we’ll all go down together. Survival is a group project. I pray, meditate, and laugh. On my dex days, I swear a lot and lose my composure with my children too often. But I’m getting through it. One day at a time.