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Myeloma, Party Of Two: The Cave View

By: Tabitha Tow Burns; Published: June 5, 2020 @ 6:34 pm | Comments Disabled

Like a cabinet door left open, the outside world is calling me. To be honest, I’m surprised that I haven’t felt it before now. Towards the end of Feb­ru­ary, con­cerns about COVID-19 were being discussed in the media. Shortly there­after, the first case of the dis­ease was found in the U.S. By the first week of March, my hus­band Daniel and I entered a self-imposed quar­an­tine, which was welcome news to Daniel’s myeloma spe­cialist, who was advising her patients to isolate them­selves as much as possible.

Our county issued stay-at-home restrictions on March 24th, but by then we had already been locked down for three weeks. For most Texans, the lockdown lasted less than a month. By April 17th, our state began reopening spe­cif­ic businesses on a staggered, bi-weekly plan. By May 1st, all COVID-19-related restrictions were lifted altogether.

It’s been a month since Texas reopened its doors, but we are still closeted behind ours. For more than 90 days, Daniel and I have only visited with one another, with my mother (who is staying with us), and with Daniel’s parents (who are also self-isolating for health reasons). I enjoy being at home, so the “cabin-fever” didn’t get to me as it has to some of my friends. The slower pace of life was refreshing, and I’ve treasured our morn­ing coffee talks in the garden or binge-watching whole seasons of our favorite shows.

But that was spring. Now we’re heading into the dog days of summer, and the novelty of our “stay­cation” is beginning to wear off. Like the rising tem­per­a­ture outside, rest­less­ness in­creases from within our walls.

The only time we leave the house is to pick up gro­ceries that I have ordered online, which are loaded to the back of my vehicle, and wiped down as soon as they are unbagged. We do not go inside gro­cery stores, retail estab­lish­ments, or res­tau­rants. We do not go out in pub­lic spaces. We cook all our meals at home. We socialize with friends by video call and we attend church online. With very few exceptions, our world consists of our front yard, back yard, what the Internet offers, and the walls of our home.

One of these exceptions is Daniel’s visits to the cancer center for his on­go­ing myeloma treat­ment. The cancer center does not cur­rently allow care­givers to accompany their loved ones, so Daniel goes alone. As you might imagine, this is not easy for me, but I pack him a bag with all the things I would nor­mally carry for him. He has his gloves, facial mask, hand sanitizer, wipes for the tables and chairs, snacks and drinks so that he doesn’t have to touch vending machines, a charger for his phone, and his laptop and power chord so that he can work during the in­fusion. We text during his pro­ce­dure, so that I know he is okay.

He goes to the treat­ment center every two weeks for his in­fusions and labs, and he sees his myeloma spe­cialist once a month. While getting treat­ment is not what I would con­sider a fun outing, it is nice that he gets to be outside amongst the hustle and bustle of our city, which is the fourth largest in the country.

On those rarified occasions when we do leave the house, I am reminded of Plato’s allegory of the cave. The story describes prisoners who were born inside a cave, bound, and turned away from the cave entrance, where they live their lives facing a wall. They interpret the world outside from the shadows dancing on the walls and sounds they hear, made by a fire lit from within the cave and the passersby outside. There they sit discussing what the world is like from their vantage point. One day, one of the prisoners escapes the cave and is astonished to see how dif­fer­en­t the world outside the cave is from what he imagined.

Similarly, for me it feels surreal to go outside and see that life has returned to nor­mal for everyone else. It would seem that we are the only people still in lockdown. Some people wear masks, others do not. Stores, banks, and res­tau­rants have cars in front, and nor­mal traffic has resumed on our streets and highways. The commotion out in the world has returned, and people have returned to their lives and responsibilities. It is such a change from the quietude in our home, that of the blue jays squawk­ing in crepe myrtles, or my mother watching her game shows outside my office.

This self-quarantine has been an exercise in self-discipline. It would be easy enough to rejoin the masses, except for the undeniable fact that Daniel is the healthiest he’s been since his treat­ment began in 2018.

Any fre­quent reader of this column knows that Daniel has had a very dif­fi­cult time with illness since his stem cell trans­plant. He’s had countless hospi­tal­iza­tions, viruses, pneu­monias, pul­mo­nary prob­lems, and temporary halts to his myeloma treat­ments over the last two years. It was rare that Daniel would go an entire month without fighting some in­fec­tion. But, suddenly, as if a wand of wellness has been magically waved over him, Daniel has been in­fec­tion-free for more than 90 days! He hasn’t had a single sinus in­fec­tion, flu, or any other malady since we entered our confinement. Even Daniel’s spe­cialist remarked that it’s amazing how healthy someone can be when you don’t leave the house!

It just goes to show you how many germs we come into contact with on a daily basis. Even the most vigilant practitioners of “post-stem-cell-transplant-hygiene” can’t avoid every pub­lic door handle, dirty lunch menu, sneeze in a closed elevator, or cough from behind. All these things are a part of the life outside our home.

It’s true, I have this vexing itch to rejoin the world outside, but I can’t make myself leave the safety and solitude of our “cave.” I have no idea how long we will be locked down like this, but I imagine that Daniel’s spe­cialist might say, “For as long as you can!”

I tell myself, all things in moderation, you’ll know when it’s time to rejoin the world, but honestly, I’m not so sure. If any­thing is obvious to us, it’s that COVID-19 is just one of the risks that we have to avoid if we want Daniel to be healthy. What I was infinitely more surprised by was that choosing to live life outside these walls came at such a high cost over the last two years. The ben­e­fit? We par­tic­i­pated in the beautiful world outside the cave.

Now we’re left with another cost-benefit analysis to per­form and, in light of Dan’s good health, this one may keep us isolated for a much longer time.

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].

If you are interested in writing a reg­u­lar column for The Myeloma Beacon, please contact the Beacon team at .


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