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Myeloma, Party Of Two: Risky Business
By: Tabitha Tow Burns; Published: July 30, 2020 @ 6:16 pm | Comments Disabled
The current coronavirus pandemic has made something apparent to me: assessing my personal risk level for Covid-19 is complicated, and assessing our “collective risk” may be impossible.
It’s been four months since Covid-19 became a household word and we entered a state of temporary lockdown. As we gathered supplies and made arrangements to work from home, I thought, this isn’t so bad! When else have we had the opportunity to stay at home and relax together?
I had my mother come down to stay with us so that she wouldn’t be lonely and I could ensure that she had plenty of groceries, supplies, and her medications taken care of without having to get out of the house. It’s been great having her here. We slipped into a groove, and the transition has been manageable and pleasant.
That was four months ago. Now, understandably, people within my household and those living outside of it are beginning to reassess whether it’s reasonable to remain at home much longer. Talking with friends and family, I’ve repeatedly heard them wonder how sustainable it is to be isolated from the outside world.
Covid-19 has significantly changed our lives. Six months ago, we went out to eat inside restaurants. We attended concerts, baseball games, and parties. We visited friends and family whenever we could. We accompanied our loved ones to the hospital. Paper goods and cleaning supplies were in abundance on every store shelf, and it never occurred to most of us to wipe down our groceries with cleaning wipes or spray our mail with disinfectant.
Now, my husband Daniel and I live like monks in seclusion, hiding from the germs outside our door. With very few exceptions, we do not see friends or family. We rarely leave home, unless it is to go to the cancer treatment center or to pick up the groceries I order online, which are placed in our trunk “curbside” by grocery workers using contactless delivery.
I have masks, disinfectant wipes, hand sanitizer, and gloves in the car with me at all times, even though I may not be leaving the confines of my vehicle. When I bring groceries into the house, I wipe them down with disinfectant wipes, a most annoying chore.
Last month, we had an unlucky string of appliance and plumbing emergencies, and it was a serious topic of concern. Although having a working refrigerator and toilet were not “optional,” ensuring our safety with someone who worked out in the public everyday was not “optional” either.
Appropriately assessing and managing risk has been the source of a lot of discussions in our household, and at times we haven’t agreed.
People bring their own unique experiences, personality traits, and concerns to the table when it’s time to assess risk. Just as risk tolerance may be different between husbands and wives, it’s different between family members, friends, and neighbors as well.
The biggest difficulty for most people in maintaining an isolated way of life is that there is a psychological price you pay for hitting the pause button on your life for months on end. Even if you are fortunate enough to be able to work from home – and many people do not have that luxury – does this mean that we are to avoid family, friends, and the normal things of life until a vaccine for Covid-19 is found?
What about Thanksgiving? What about Christmas? I miss my loved ones. I can’t imagine spending the holidays apart. Are we going to eat turkey legs together virtually and share presents by videoconference? The thought of it just makes me so sad, but given how different our risk levels are for contracting Covid-19, I don’t know if it is responsible for us to be physically together.
Even within our family, we are assessing individual risk and reacting to this pandemic differently. My sister and her family are staying at home as we are. With Covid-19 numbers rising in her community, she is committed to educating her kids at home, if necessary, because she doesn’t feel it is safe for them to return to school in-person.
By contrast, my husband’s brother and his family have just taken a vacation where they travelled out of state, stayed in a hotel, toured public sites, and ate out in restaurants. They were given the option, and decided that their kids will be attending school in person next year, mostly because the kids feel that they learn better in the classroom, not online.
Given our situation, we aren’t taking any risks. My husband Daniel is still on his Empliciti (elotuzumab), Revlimid (lenalidomide), and dexamethasone treatment regimen, and he also continues to receive Xgeva (denosumab) and other supplemental medications. In addition to having multiple myeloma, Daniel has additional high-risk factors including a “new immune system” (about 20 months post stem cell transplant), scarring on his lungs from bouts with pneumonia last year, and high blood pressure. I have no idea how he would respond to Covid-19, but I don’t want to find out, either.
Even my mom is beginning to feel the pressure. She has been staying with us for four months, but she is ready to return to her life. She lost her job due to Covid-19 cutbacks in March, and she knows how difficult it can be for people her age to find work. She wants to go home so that she can visit her grandchildren and manage her affairs.
I know that she needs to find work, but how will she protect herself from the dangers of Covid-19? How reasonable is it for seniors to be living alone during a pandemic? How will this impact her emotionally and psychologically? Plus, she has several high-risk factors as well. I am very concerned about her exposure to the virus.
Assessing Covid-19 risk is made more difficult by how much we still do not know about this virus and how it affects people. There appear to be different strains of the virus, and how you respond to treatment is partly dependent on which of the strains you have as well as your personal health risks.
Recently, a friend of ours was rushed to the emergency room, after being diagnosed with Covid-19 less than 24 hours before. Within a short span of time, he went from feeling a little flu-ish to not being able to breathe. He is a healthy, fit young man in his early forties without any risk factors for this disease. Thankfully, the hospital gave him antibiotics to reduce the inflammation in his lungs, he recovered, and he was sent home to recuperate.
Just as with multiple myeloma, you can’t know how you will react if you are infected with coronavirus. Some people get very sick. Others do not. Knowing that makes it infinitely more difficult to assess your risk.
As for Daniel and myself, when we think about everything we have come through so far, these choices aren’t so tough. We don’t have the luxury of exposure. This will guide our decisions, and it may make for a difficult year ahead.
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 [1].
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