Myeloma, Party Of Two: The Cave View
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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thanks for your column. I’ve had the same experience: no colds or lung infections for three months.
Good luck to you both,
David
David, Thanks so much for your comment. I'm glad that you are doing well. Hopefully we can all keep that way during these odd times!
Tabitha I’m so happy that something is finally going ‘right.’ After following your journey over these many months, and your move to Houston, I’ve been waiting for your news, hoping something would proceed in the right direction for you two. May it continue in the best way possible. Who would have thought that this pandemic would be a catalyst to help along the way?
Dear Tabitha, thanks for such a thoughtful column. The allegory of the cave described by Plato is one I have not heard for a while! It's true that just isolating can protect one from contacting infections. I am finding that to be true also, since I do steer clear of people (social distancing) and I wear a mask at medical-type appointments. We may feel a little left behind from the main population, but hopefully there will be treatments and even a vaccine to protect us in the future. In the meanwhile, I hope you can enjoy your time together.
My husband is three-and-a-half years post stem cell transplant and is experiencing the same thing; unusually good health! He is very immunocompromised, but neither one of us wanted to give up traveling. He’s had multiple infections over the last year, including a one-week hospital stay with influenza in January after attending an international film festival in Palm Springs.
Sigh.
Things have changed, and we’ve decided maybe I should travel without him in the future. What a hard decision. We will keep reevaluating and hopefully some joint trips will be in our future.
Thank you for such wonderful articles from the perspective of a caregiver.
Great article! Yes, isn't it amazing that we can be infection free when we don't come in contact with so many people and contaminated surfaces on a daily basis?! I've been working from home since the middle of March, and my boss may make it permanent. I haven't had anything either since being home! Our state just started opening up last month and we shall see how many more COVID-19 cases appear after all these people start relaxing their sanitation methods. Stay safe, everyone! And praying for continued health for you, Tabitha, Daniel, and all your family!
Janice, Nancy, Judy and Susan – Thanks so much for your comments! I have a number of friends with medically fragile or high-risk family members, and it's interesting to me how many people have shared similar things that you have said. All of them are doing well physically from being at home. This just surprises me, because when we went out before COVID-19 I was always really vigilant. I always had the hand sanitizer and wipes at the ready! I guess that it just underscores the difficulty one has in controlling exposure in a public environment.
Janice – I'm with you. Wwho would've ever guessed that this horrible pandemic would've provided the catalyst to Daniel's current good health?
Susan – I agree with your point as well. I worry about what will happen once people start relaxing their standards. I see people without masks on in public, and it makes me very reluctant to ever leave the house! Knock on wood our collective good luck continues in the weeks and months ahead.
Wishing good health for all of us!
Dear Tabitha, many thanks for your column. Firstly I am really pleased that Daniel is keeping well and away from infection. I am sitting with you in the cave! Our lives have been very similar to yours during the lockdown. We’re currently still in our cave and have very mixed feelings about venturing out again. I am desperate to have a more varied life again but frightened of what might happen when I do. It’s safer in the cave, but it’s not a lot of fun!
Even though I was isolated for three months in an apartment in a locked-down community, I got pneumonia and went through the "hospital hell" and thoracentesis. Recently, out for my usual lone walk where I see no one but a few dog walkers, I stepped on a stick, which punctured my leg badly, and had to seek "urgent care." So bad things happen even in the "cave." However, the good side is that I recovered from the pneumonia and my leg will heal – alone!
Great column, Tabitha. I am so happy to see that Daniel has been well during the stay-at-home orders. What a relief that must be for you.
We too have been hunkered down since February 25 here in New Mexico. Some businesses started to reopen June 1, and our favorite restaurant opened today. Unlike you, I had to go to the grocery store every week during the shutdown since our community is too small for home delivery and even curbside pickup. I did not let my husband go anywhere except the trash dump (no person contact) just so he could get out of the house. We both have been well during this time period and plan to continue the precautions we have become accustomed to. Like you and Daniel, we went through a period of time right after diagnosis where my husband was frequently sick, including pneumonia. We learned quickly that we had to protect ourselves, because most people who have not experienced cancer are clueless when it comes to germs. I am glad that we developed a new normal well in advance of COVID-19 so that the staying at home was no big deal for us. And like you, I really liked it.
I hope that Daniel’s health continues to improve and that everyone in your family remains healthy.
Get new Myeloma Beacon articles by email.