Myeloma, Party Of Two: Tough Choices

Unexpected things can present tough choices that change the way you live. I suspect that most myeloma patients would agree. All myeloma patients have entered a doctor’s office as an “uninitiated” (regular person) and left as a cancer patient. That diagnosis changes a person’s life forever, and in its wake there are many choices to be made: initial treatment regimen, radiation, stem cell transplant, clinical trial participation, and more.
Over the past six weeks, the pandemic known as coronavirus disease 2019, or COVID-19, has entered the world’s vocabulary. The number of reported cases is growing exponentially even as we try to “flatten the curve” to keep from overwhelming hospitals in the face of this virus, for which there is no current cure. As anyone living today can attest, COVID-19 has left us with some tough choices.
In the city of Houston, as in cities all across America, we are living under a modified shelter-in-place order. This had had serious consequences for our local economy. Non-essential companies, restaurants, gyms, stores, churches, and schools are all closed or offering modified services only. Many employers have laid off their employees because they could not afford them on the payroll any longer. This was certainly a tough choice for the city leaders to make. No mayor wants to be forced to choose between a free economy and rampant disease that could decimate the population.
This shelter-in-place order has dramatically changed life in Houston. Citizens are allowed out to grocery stores, medical appointments, and to walk in parks for exercise as long as they keep a six-foot distance between themselves and other people. So much has been made of how to avoid interacting with people in public that we now have a new buzzword to describe it: “social distancing.” The highways are traffic-free, and the roads are sparsely driven. For an area boasting five million people, that is no small feat. Non-essential businesses have been closed, and the public is urged to stay at home and avoid contact with anyone outside one’s household. This has been difficult for many people, unused to being stuck at home, unable to go to work, send children to school, or socialize with others.
Despite these tough changes, I think myeloma patients, especially those ones who gone through stem cell transplant procedures, are better prepared to adapt to the challenges that this pandemic has brought to our lives.
Many of us know what it is like to practice social distancing due to weakened immune systems. My husband Daniel and I didn’t see friends or family for nearly three months after his stem cell transplant. We didn’t travel or go to church services, movies, or restaurants. We worked from home so as to not expose him to viruses. The only time we left the house was to take him to the cancer center for his medical appointments. I occasionally left the house to pick up supplies, but I utilized online grocery pick up or delivery as much as possible so that I wouldn’t be mixing with the public.
Even now, after years of myeloma treatment and countless diagnoses of bronchitis, pneumonia, and viruses, we are hypervigilant about things that most people take for granted: sitting down at a table, traveling in an airplane, touching a door. Long before COVID-19, I carried hand sanitizer with us everywhere and wiped down public surfaces with cleaning wipes!
Hospitals have made tough changes as well. Except for extreme cases, hospitals are no longer allowing visitors and caregivers. This means there are mothers giving birth alone without their labor partners. Spouses cannot be there to care for another through treatment, and patients must rely exclusively on hospital staff for all their needs. I cannot even go with my husband to see his specialist, given the new restrictions. I don’t mind telling you that it’s brought some anxiety to our house.
I understand why this difficult decision was made. The number of COVID-19 cases is growing exponentially in our area, and there aren’t enough tests to test everyone. As a result, only those with symptoms are getting tested, even though we know from those exposed to COVID-19 on cruise ships that some people tested positive for the virus who didn’t have any symptoms at all. Therefore, there may be many people carrying the virus who don’t know it. Hospitals therefore have had no choice but to lock down their facilities, but it was a tough choice, and it has impacted a lot of people, patients and caregivers alike.
A difficult choice I’ve personally made was how to care for my mother during this pandemic. Daniel and I chose to self-quarantine after the first case of COVID-19 was announced in the United States, so we’ve been in a sterile bubble this past month. Unfortunately, my mother has mobility issues due to a recent injury, and she lives alone in another city nearly five hours away. She has been mixing with the public because she needed to go to work every day. Now, with both of our respective cities in lock-down and given her health issues, Daniel and I needed to decide whether we could risk the exposure to bring her here with us. In the end, the choice seemed obvious. Like Houston leaders making choices between two tough options, my mom will stay with us until the virus passes and it is safe for her to return home.
This is an unprecedented time for our world, our country, and our communities. COVID-19 certainly has brought us all tough choices. We know that there will be things that we cannot control. But if dealing with the ever-changing complexities of myeloma treatment has taught us anything, it is that we know we need to follow medical advice, be strong, and persevere, for “this, too, shall pass.”
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 and active (symptomatic) multiple myeloma in 2018. You can view a list of Tabitha's previously published columns here.
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Thanks, Tabitha, for this very relevant column. I am hoping that you, Daniel and your mother come through this in good health and spirits. We have a similar situation here with the hospitals and care facilities, and having limitations on visitors to those places must be difficult for the patients there too. Let us hope that this virus passes over and also becomes less virulent. It seems to me that just as in other viral diseases, such as measles and chickenpox, a vaccine is really needed. In the meanwhile, we have to try to avoid catching this dread disease.
Thanks for your column, Tabitha. We are enduring the same situation here in Minnesota. I agree that after having my stem cell transplant, I’m not finding the isolation as horrible as my friends are. This isn’t my first rodeo!
The difference is that after my transplant, I really didn’t want to be around people in my weakened state. Now, I miss my “tribe!” We have been using videoconferencing to have gatherings, which has helped all of us. Being social is who we are. My husband and I were reading about this same type of pandemic scare occurring in the 1950’s when people were just as isolated for about a year due to the polio epidemic. It wasn’t long before a vaccine was developed, and things were back to normal. I think that is what’s going to happen to us now. We need to be patient and hypervigilant, like you said. This, too, shall pass. We will be stronger for having lived through this pandemic. Stay healthy everyone and stay home!
Thank you for your comments, Nancy and Patty! Like you both, I hope that a vaccine is developed soon. In the meantime, hypervigilance is key! Together we can flatten the curve! Thanks again, and be well!
Praying for you and Daniel and your mom that you all stay well. Hard choices to be made these days. I was at my oncologist's office a few weeks ago and saw a patient collapse at the front desk. I'm sure if her husband had been allowed in, he would have been able to hold her up, but I do understand why the medical center is making these rules. We have been so spoiled, especially in the USA, for so many years, so this is new and difficult for us.
Like you, much of the social distancing and sanitizing is nothing new to us who live with cancer or have a loved one with it. It's a welcome change, frankly, to see that so many others are now being mindful of their germs! Sadly, I know too many who think this whole thing is a joke. I wouldn't wish this nasty virus on anyone, but I wonder what it would take for the light bulb to go on in their heads.
Stay safe, Tabitha, and I pray Daniel does well.
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