When you have had multiple myeloma for a few years, you basically live monthly to get your current myeloma panel results. When you get them, you look to see what is in the abnormal range. Then there is always a sigh of relief. Then we go on our merry way. At least until we don’t!
Living your life with an incurable disease or cancer is stressful. We are always waiting for the other shoe to drop. Whether it is a Louboutin, Manolo Blahnik, or Nike, this disease seems to always guarantee the shoe will drop. It is just how far down it falls, that is important.
Myeloma is such a complex and subjective disease. I’m in my third remission now. Some patients never get into remission. Others get to baseline and then have stem cell transplants, especially if they have high-risk myeloma. Currently, the gold standard for high-risk myeloma is to do a drug treatment regimen, and then do a stem cell transplant. Other patients just keep on trucking through it all, with no let-up or remission. As more and more drugs come to market, the number of transplants is declining. We are all grateful for this.
But what do we do in the meantime, each month to prepare ourselves for a possible relapse? It is not easy being patient and waiting for results every thirty days. Should we go to church and pray non-stop? Should we meditate it all away? Should we shop for more shoes since we may need them at a later point? Should we ignore our fears? Should we do as the Brits do, and put the kettle on; assuming a cuppa tea can solve everything? Run out and get a new pet so they keep you occupied? Not a great idea if everyone in your house doesn’t agree to take care of a pet. Go to bed until the following month while eating a generous supply of gummies? Order twelve pints of specialty-flavored ice cream and see how long it takes you to consume all of them? I guess that goes back to the gummies! Probably not.
In doing some research, I found the following ways to chill out and stop worrying about news that might not show up:
- In fact, tea lowers your stress hormone cortisol which can actually relax you. So maybe the folks on the other side of the pond are correct. Who knew?
- Stay off, Dr. Google. Not all the information we know is true online. Not every article has correct information about myeloma prognosis. If you want to arm yourself with accurate data, go to the following websites: https://www.myeloma.org (International Myeloma Foundation), https://www.healthtreefoundation.org (HealthTree Foundation), https://lls.org (Leukemia & Lymphoma Society), or https://themmrf.org/ (Multiple Myeloma Research Foundation). Try to develop a great relationship with your nurse practitioners or PaCs. This can be really helpful for answering questions about your results if the oncologist is not there or does not have the time.
- Don’t always assume the worst. Keeping an open mind can be extremely helpful. Trying to keep a positive attitude is the best we can all do to avoid making things worse.
- Get lost in a new book. Perhaps even a mystery that can keep you from focusing on your own life — dive into the lives of the characters in the book. Take time for yourself always. Give yourself a break.
- Phone a friend! Talking it through with a best friend, someone who is great at listening and not judging can be very helpful. Sometimes they could be going through stressful situations as well. Compare notes, and help one another.
- The night before you get your results, take a hot bath and try to just relax. This goes back to #3, you can’t control everything. Then try to either pray, meditate, or do something spiritual if that is in your wheelhouse.
- Join a support group for myeloma. The IMF has one in every city, and even outside the United States. You will meet people going through the same thing as you. You are not alone. We all go through this.
- Go to HealthTree Foundation’s website and ask for a coach to navigate you through this difficult journey. I am a coach and it is such an honor to speak with patients who are trying to understand this horrible complex disease. This can be an ongoing relationship, not just for newly diagnosed patients. You will always have someone that you can rely on when things don’t always go the way you expect.
- Plan for your own reaction. Label scenarios for each possible situation. Write down the appropriate reaction to each outcome. When you get the results, go to that rehearsed reaction and let the others go.
- When all else fails, try to understand that we cannot control everything in our lives, especially our cancer journey. It is out of our hands. Perhaps doing deep breathing exercises each day, and repeating to yourself that “we are not in control.” We do our best to understand the actuals without worrying about “what could happen”. Control the controllable, like where your thoughts go, what you say to others, etc.
Every month when I look at my test results, I pray that everything will work out. I look at trends, nothing static. I have gotten used to the idea that I will be on something until I am not. I can’t worry about everything not going my way. I trust in the fact that what happens, happens. I have always told my kids, “Life is ten percent what happens to you, and ninety percent how you react to it.” This is pretty much how I live my new normal, a life with cancer that may never go away. But I can hope!
Talk to you all next time, until then, find something funny to share with those you love.
Best,
Cathy