Musings on Having Blood Cancer During the Covid Pandemic

Musings on Having Blood Cancer During the Covid Pandemic

“It occurs to me that perhaps I don’t have to push at life quite so hard after all, that sometimes the best thing we can do is allow our lives simply to take us where we need to go. The truth is, I don’t have any idea what goals I should be focusing on or how I ought to compose my life at this juncture…All I can really do is give in to the moment at hand – then pause, consider, and take one more step forward into the unknown.”

       – Katrina Kenison, The Gift of an Ordinary Day

I have been wanting to update my experiences for a bit, but just have not had it in me.  To be honest, I have been fighting anxiety and depression and ANGER. I share positive quotes and gratitude on social media– many days it is to remind myself to try to be hopeful.  It has been rough.

Really rough.

But the above quote struck a chord. Sometimes just one seemingly small thing gets me back on some kind of track, even if it is with shaky footing.

It was much easier for us when everyone else was in the same situation—before vaccines were available, when masks were mandated and businesses shut down, when no one could go out to eat.

We regularly phoned our family members to check in. We had speaker phone sessions with the local friends we usually would meet for dinner. We attempted Zoom gatherings—which didn’t work because of our pitifully slow internet. We sadly accepted that we must spend Thanksgiving and Christmas of 2020 alone. And we did it.

Then came the mad scramble for vaccine availability. That seems forever ago—when those of us who desperately wanted the protection were clawing our way through the red tape to get an appointment. And then that hopeful spring time when the number of cases was going down and things looked so hopeful in the summer—before the Delta variant hit.

To be honest, because of our medical conditions, my husband and I never stopped masking and being cautious.  We have continued to get groceries online/curbside for the whole 18 months. (We did keep wiping them down before bringing them in for way too long—but felt like we had to try to do everything we had control over.) Sigh.

We got caught up in that spring/early summer optimism. While we VERY sadly declined an invitation to my niece’s wedding (which was attended by all of my other siblings and their whole families—it killed me to not go), we did start inviting other vaccinated friends to join us for outside gatherings—as long as they were willing to mask up.  We had my sister-in-law visit. She stayed in our camper.  We ate all of our meals outside and stayed masked when not eating.   Our daughter was able to drive 2,729 total miles to visit for the first time since Christmas of 2019. She also stayed in our camper, until the very last night of her visit, when she happily slept in her old room. We ate outside then also. She did visit several friends while she was home, but she asked them to meet her outside and masked.  We all drove to the mountains together in the same vehicle—with windows down and all three of us wearing KN95 masks. It was surreal—and lovely!  I was going weekly to a specialized occupational therapist for treatment of my left arm lymphedema (a result of my 2007 bout of breast cancer.). The OT and I both wore KN95 masks as she did massage on my arm and lymph pathways, but we visited the entire time (my only social outing)—and that started to feel risky.

And then the Delta variant spread further.  Friends and family members, in all parts of the US, knew fully vaccinated people who were testing positive for Covid—some hospitalized and seriously ill.  We started feeling really vulnerable again. And we have gone back to essentially full self-quarantine.

On August 27, I was able to get a third dose of the Moderna vaccine.

I have been participating in research studies with the Leukemia & Lymphoma Society (LLS) to look at vaccine response in Blood Cancer patients.  After the first two vaccines, I still had no antibody protection for Covid.  What the research is showing is that up to 2/3 of the patients receiving the kind of treatment I get (Rituxan), show no response to the vaccines.  So basically, I am more likely to have severe illness or death from Covid because of my blood cancer, AND, the gold standard treatment I get for the lymphoma essentially cancels out the vaccine because of the way it is meant to work.   I had another antibody test before receiving the third vaccine (still no antibodies.)  And I will get a follow-up test 5 weeks post vaccine.  I had my last maintenance infusion of the Rituxan on July 17.  My Oncology team has recommended that I put my cancer treatment on hold for now, in favor of trying to build protection from Covid. I am being monitored with monthly bloodwork to make sure my cancer is staying stable.  Research is suggesting that it takes 6 months after the Rituxan treatments for patients to have the ability to produce antibodies for Covid.  That puts us to mid February 2022.  And even then, I might need another vaccine or another treatment. Hopefully the research will continue to provide better treatment protocols for folks in my position. So here we are.  Still.

I remain hopeful (on most days) that I will eventually have some kind of protection from Covid.  Yet right now, we are still TERRIFIED to be around other folks.  I honestly do not understand how it all became so political and ugly.  The local Covid cases are relatively high again and there is a mask mandate.  Yet, there are many mask-less folks going in to the grocery store when I sit in the parking lot waiting for our curbside order.  The last time my husband was in our local pharmacy, most of the employees were not properly wearing masks (you know that around the chin/throat thing), or not wearing them at all.  It is MADDENING!

There are some days when I have to just not look at social media posts. I have almost deleted my accounts several times. I can barely look at photos of other people now traveling and basically living a slightly modified version of “normal”—for me that is like another long-ago life.  I am happy for others that they feel safe enough to go back to “living” life. 

In my heart, I know that I can’t “blow it” now—after all of this. BUT REALLY? 

I miss going to the library.  I miss going to movies on the big screen.  I miss spending hours in a fabric store—feeling the fabrics and matching my colors. I miss wandering the aisles in Target, and hunting for cool bargains at thrift stores. I miss eating out with friends. I miss being in someone else’s home.  I miss having visitors inside our home. I miss traveling. I would love to go to the local winery on a Sunday afternoon and hear the live music.  I miss art galleries, and openings, and museums. I miss concerts and plays. I want to meet my newest great niece and nephew and have in-person time with my siblings. I miss going for a massage.  I miss being able to relax.

What we have been doing for the past 18 months may seem crazy.  We are fortunate to be retired during all of this (I would have had to quit working under these circumstances.) We have been able to switch to online  curbside shopping for almost everything. We simply choose to stay home, and now have backed off again on spending time with anyone else. It may seem like over-kill, but then we are still alive in an area of our county with 38% vaccination rate. For me, PEOPLE=DANGER

So here we are, still…..