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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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