Deb's Journey

I am excited to share the news that I was the first patient at SW Oncology in Durango to receive Evusheld injections!

Evusheld is a combination of two monoclonal antibodies made by Astra Zeneca.  “It has been given Emergency Use Authorization by the FDA as a pre-exposure prophylactic for prevention of COVID-19 for immunocompromised persons who may not have built an immune response to the vaccines.” (FDA) 

That means ME!!

“Monoclonal antibodies are laboratory-produced molecules that act as substitute antibodies that can restore, enhance or mimic the immune system’s attack on cells.” (FDA) There are several that are being given to people after COVID exposure to try to help lessen the severity.  I have been eligible for those if I was exposed.  Evusheld is different because it is targeted for PRE-EXPOSURE for specific populations.

The drug is still in investigational stage and very few people have taken it, so there isn’t much information about possible side effects—short term or long term.  I had to have a negative COVID test—the first one I have needed to take in these two years. Following the injections, I had to be observed for an hour for possible reactions.

This drug is so new that there is not a recommended process for determining if there is an antibody response, including an estimate of how long it may take for protection.  My Oncology team is scrambling to figure out where to go from here to see if this helped.

So I am a guinea pig and a pioneer.

And for the first time in a long while, I feel hopeful. 

To all the folks who have refused to even get the vaccine because it is “too new and unknown”, I must seem like the crazy one.   But I never hesitated for a minute to try to do SOMETHING to protect myself. 

Like everyone else, I am so weary of Covid—and it seems like it will never end.

Unlike many people, I have felt like a doomed sitting duck.

As I have written previously, it is unbearable to have so many people unwilling to step up to try to stop a global public health crisis.  Since so many people won’t protect themselves, and others, and me, I have chosen to step into a new unknown to try to protect myself from dying from the virus.

I have had a couple days of aches, headache, mild nausea, low-grade fever, just blah.

Thankfully, no major issues. I don’t plan to change my isolation/family bubble quarantine any time soon—especially since the case numbers are so high right now, but I am hopeful this will help in the long-run.

Thanks to all who have been supporting us with prayers and well wishes.

I continue to hope for hugs, gatherings, and safe travel in times to come.

Wishing you well!!

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…..

So, in the “Before”—way back in September, I started what I thought would be regular writing about my recent Non-Hodgkin’s Lymphoma diagnosis and pending treatment.  I thought it would be a good way to process. 

Then the consulting blood-cancer-specialist recommended that we wait on treatment (partly to try to diagnose which “sub-category” of the Lymphoma I have, which would better target my treatment protocol.)

So everything was on hold.  And I pretty much quit writing and posting my blog.

But the cancer is still there.  I still have not started treatment. I do have blood work at least every three months.  The counts they are watching are getting”worse”. I have been really tired.  But we are still waiting to determine exactly what treatment protocol is best.  My White Blood Count—those cells that fight infection—is still very low.  I also have other underlying health conditions.

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And now we have the NOW.

People have asked how we are doing in this time of coronavirus.

The short answer is “hanging in there.” 

And the other short answer is that I have been absolutely TERRIFIED.

So maybe I will write to process.

We (my husband and I) don’t watch television news. We listen only to public radio stations. We do use email and social media to stay in touch with friends and family scattered far and wide. We aren’t bombarded with COVID19 news, on one hand. And on the other hand, we can’t escape it.  My husband says I should just stay off the Internet because I get so worked up.  I am working on ways to limit myself. And on other ways to cope with what I read/hear.  In some ways, I just want to know more, more. Everything. And then I can’t bear what I am reading. It’s like when I was binge-watching The Handmaid’s Tale.  It is disturbing and frightening; yet I can’t stop watching. (And that was a made-up story, but for me, totally plausible. Even more so now.)

Like everyone, I have been kind of following along as the virus was in the news. Have never been to China, but I do remember being thankful that my nephew made it home to the States from his study abroad in China before it all hit. We have been to Italy.  I love Italy. So I started paying a bit more attention, as the news of the virus there grew more alarming.  And that is when I started feeling the need to really seek information on what was happening there. 

As the stories began to come out about the overwhelmed medical system in Italy, I was shocked. Reading the chilling accounts of medical personnel having to triage patients needing the ventilators. To make actual decisions about who to try to save and who to let die because they didn’t have what they needed to save everyone.

It hit me like a ton of bricks.  I realized that if the same scenario happens here in the US, I would almost certainly be the one to let die, because of my underlying conditions.  And I also realized that it’s highly likely that my body won’t be able to fight off the virus even if I am able to get the needed care.

As things continued to get worse in Italy, and as the virus began to show up in the US, our household became very unsettled. (My husband is over 65 and also has underlying health conditions.)  Like everyone else, we have been going through a range of emotions.  Fear, grief, sense of loss, disbelief, and ANGER.

We self-quarantined before things shut down.  I chose to stop going to my physical therapy sessions when I really looked at all the possibilities of germs in the facility. We have followed all the guidance on hand washing and cleaning high-use surfaces.  We have added many people to our prayer list—other medically high-risk friends, medical personnel on the front lines. We have done everything we know to do.  And I feel so helpless.

I keep looking for the guidance and information that I believe should be coming from our leaders at this time.  I am so ANGRY that we don’t have it. (Ok, not surprised though.) Instead of being reassured, I am repulsed at the actions of this administration.

I am so fearful of the times ahead. 

At a time when so many people still don’t believe that there is a real problem.

And I am angry about that.  I am angry that we still have such a difference in beliefs and the news that we are being given, by virtue of which news outlets we use.

I am angry that this health issue has become politicized, in spite of it all.

I am trying to make peace with the possibility of not making it through this pandemic.  My husband is worried that I am just giving up.  I don’t feel that at all. Yet, I feel like I have to let go in order to get some sense of peace instead of the constant fear and panic. 

This isn’t my first rodeo.  I am a two-time breast cancer survivor.  My first bout of breast cancer occurred when our only daughter was four years old.  You better bet I was fighting hard that time!  I had such tremendous support for both of those battles.  Prayer warriors, a mail-in hat “party”, loads of help with meals, and on and on.  But here is the difference.  The oncologists had some idea of what to expect.  They had data and studies to base their decisions on.  I could have a test to see if one of the chemo drugs was doing damage to my heart, then the treatment protocol could be adjusted. There were treatment protocols to follow. There were proven drugs that statistically helped many people. There were specific tests to determine the diagnosis in the first place.  The medical personnel followed specific safety protocols in the chemotherapy infusion room.  My husband came with me for all appointments.  A dear friend often took me to the chemo-days so my husband could keep working.

If I (or you) get severe coronavirus, it is a fight for life. It is not the same at all.

First of all we would need to be able to get tested to determine if we do have it.

Then, if we are positive and we become ill enough to be hospitalized, the medical team may not even have the masks and other equipment they need to keep themselves safe.  From everything I have read, once a person gets put on the ventilator (if there is one for them) and put in isolation, the medical team is providing the best treatment they know, of based on what has been learned so far, and based on what they have available.  And hoping. While the patient’s family is in isolation somewhere else.

When I think of dying, I remember being in the hospital rooms as we said goodbye to my Father-in-Law, my Mother-in-Law, and my Dad.  Other family members were with my Mom and my Grandmother when they died at home in hospice care.  “Died peacefully surrounded by family.”  We were able to gather to mourn those deaths and honor their lives.

We have all read the stories out of Italy, and now the US, of people dying in the isolation rooms alone. And today, of the army trucks taking the coffins of hundreds of Italians to cities further away to be cremated because the local facilities were overwhelmed.  And no funerals—no gatherings–for fear of more viral spread.

It is overwhelmingly sad and frightening.

And really happening.

And I am not sure if writing this is helpful.  Or if it is helpful for anyone to read it.

But it is my human response at this moment.

I have lots more swirling around in my head. There are a lot of wonderful things happening as well. People are jumping in and helping each other.  It is amazing to see some of the kindness and gestures. We are all in uncharted territory.

It feels like one of those events like The Great Depression, WWI, WWII, 9/11.

Where things will never be the same again.  

I will keep processing.

Peace.