Death

I realize that’s not the most inspiring title; that’s just want I’m thinking about right now and have been for quite a while.  Last week, while I was experiencing a small version of my blog post going “viral,” I learned that a friend of mine had died.  I use that word a little tentatively since online friends are in a different category, I think.

I never met Kari Roush in person, we never even talked on the phone; yet, we “talked” electronically regularly for over a year.  We mostly communicated via Facebook messenger after having been connected as Sister Buddies through an online support group.

The sister buddy program in one of my favorite support groups is designed to connect members to ensure that no member is “lost” in the shuffle.  Since those of us with Stage IV metastatic breast cancer are often ill, often dealing with bad news, often struggling silently, often not very open about struggling …. well, you get the picture … the program is designed so that outside of the larger group, we can connect on a more personal level.

We connected.

Kari and I have the same subtype of metastatic breast cancer and our sites of mets was the same, bone only, until October when the cancer left her bones and invaded her organs, specifically her liver.  We have been on the same treatment too and experienced very similar side effects and issues.  We were only months apart in age.  We are both mothers and talked openly and frankly about our joy and fears at how cancer is and will continue to affect our children.

When Kari had progression on the same medication that I’m currently taking, we talked about death.  Breast cancer is sneaky and mutates often to get around medication.  Hormone positive breast cancer mutates often and aggressively, often years even decades after an initial diagnosis.  We talked about how she was feeling until she stopped engaging as much or as often.  She kept talking about being tired, how she was sleeping for most of each day, how she was afraid and losing hope.

Kari died on January 3, 2019.

Kari died because her cancer mutated beyond the ability of the current knowledge to stop it.  Why is that?  Because not enough funds are allocated to metastatic breast cancer research.  Because not enough progress has been made to understand how metastatic breast cancer works.  Because not enough people are motivated enough to eradicate this horrible disease.

Even though I had not met Kari, I’m so sad that she is no longer in this world.  I not sad that her discomfort and pain and sadness and struggles are at an end.  I know that she is in heaven and she has attained her perfect body, free of all the struggles of this world; at the same time, I am selfishly sad that we won’t have those late night exchanges, getting the other without the need for words.

I addition to being sad about the world’s loss of an authentic human being, I’m angry.

Not just angry, I AM FULL OF RAGE.

Kari didn’t have to die.  Her family didn’t have to deal with the loss of a special person who loved and cared for her children, her mother and those around her.

Why did she die?

Kari died because the mechanism of cancer and metastases and progression and how to address what happens to the human body when cancer invades and spreads has not been solved.

Why hasn’t this puzzle been solved?

Because insufficient funds have been allocated to solving it.  When funds are allocated, when smart researchers and statisticians and bright minds are focused on a problem, it is much more likely to be solved.

There are many arguments about percentages and specifics and the motivations behind whatever actions or inactions, etc.  It’s hard to care about all of that when my friend is dead.  It’s really hard to care about details and statistics and processes and procedures when there are way too many similarities between Kari’s experiences and my own.

The bottom line for me is that there are many many dollars (and every other kind of currency) raised every year in the name of breast cancer and finding a “cure.”  Yet, so little of those funds goes to metastatic breast cancer research.  I don’t know the exact percentage nor do I fully understand all of the politics, what I do know is that every person is unique and wonderful and worthy of a cure.

I was motivated before Kari died and now I’m even more motivated to speak up, to point out disparities of care and funding and to shine a light on what others might want to keep hidden–especially those “charities” that raise money ostensibly to find a cure and then spend the majority of that money on “awareness” and “education.”  Yes, I’m referring to the marketing machine that rakes in millions every year and yet allocates less than 25% to research.  It’s pathetic and enraging and I take it very very personally.

I HATE breast cancer; hate it with every fiber of my being.  I deserve a cure, Kari deserved a cure, and the hundreds of thousands of men and women living with metastatic breast cancer deserve a cure.

Who’s with me?

Author: Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

4 thoughts on “Death”

  1. I am with you 100%! I didn’t know Kari personally, and don’t recall having a great deal of interaction with her via FB groups, but like you…I’m sad, and I’m mad. Each time I learn of another younger person dying from this horrific disease, I want to scream at someone. I want to shout about the unfairness of this disease and the loss it causes, which most people can’t even begin to imagine. Those of us living with this disease, united by a beastly monster, seem to be the only ones listening. We’re listening to each other, but WHO is listening to US? There has to be a better way to approach this, and until I no longer have a voice, I will use mine to create awareness about MBC, the underfunding of MBC research, and the changes we NEED and deserve. I’m with you Abigail. Each loss is more difficult to bear, we simply must get the attention of the organizations with the deep pockets, and encourage them to change their focus and spending! I’m so sorry you’ve lost your friend. My heart breaks for you and those she left behind.

    Liked by 1 person

  2. So sorry for your loss. I hear you. Whoever dictates where donations are spent, needs to hear you and the many women suffering from this beast. Change needs to happen. Congress and legislators need to hear. It needs to be on every effing bus and news media so that those “sleeping on the switch” can wake the hell up.

    Much love and light. Big hug girl.

    Liked by 1 person

  3. I’m in. I am so pissed off everyday about the very atrocities of which you speak. It is literally standing in my face screaming back at me DO SOMETHING!!!! I do everything I can to advocate for myself, but that is not enough. Every drug, every scan, every visit, everyday with this disease is too much. My doctor probably rolls his eyes and stammers for words when he sees me on the days patient list. I question everything, refuse and or eventually have stop taking every drug they have ever thrown my way. I am at my wits end with the hot flushes. Thank goodness I have found some relief from some of the other side effects, but I am not settling for relief. I want to be cancer free without killing myself with the present protocols being offered. When I go to the oncologist with any complaints, they look at me like I am an alien speaking a foreign language. It is like being punched in the face.
    I am presently facing the reality that Faslodex is going to be removed from the list of things my body can tolerate. I have been doing bee venom therapy since the end of August. It has helped me immensely with the side effects, no more nausea, not as tired everyday. I just started consuming bee pollen granules to manage the hot flushes that last for sometimes up to 48 hours at a time – straight, not a hot “flash” this is a different monster. It wrecks my life; hot, cold, wet, sticky, drains me. It has progressed since adding the aromatase inhibitor (faslodex) back into my system. I gave up the Letrozole in the latter part of 2017. After five or so months the hot flushing finally went away. Now stage 4 with mets in my bones, a lot of them.
    We need to band together, I don’t have the solution, but certainly the will power to fight together.
    Kind regards,
    April

    Liked by 1 person

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