The NOW

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.