Belated #metsmonday – Losing friends, losing decades

I just got back from a great advocacy event in D.C. and I thought at first I’d post about that. But that will have to wait till next week. Right now I’m sad. I’m sad and I need to write about it.

I have mentioned Beth Caldwell before, who has been the heart and soul of the metastatic breast cancer advocacy and a person I am proud to call a friend. She has had a lot of ups and downs the past few months, which finally culminated in this announcement.

I remember living in Swaziland, and while I really loved living there in many ways, disease and death everywhere I looked wore on me over the two years. I wasn’t the only one. Our medical officer actually gave all departing volunteers a prescription for grief counseling when they returned to the US to deal with the effects of living in a high-death environment. Well, the life I’m living now has many similarities to what I experienced in Swaziland, except the stakes are much higher because I’m one of the ones in line to someday die. And I can’t escape the disease, the losses, after two years of service.

I “met” Beth online three and a half years ago on a message board for young breast cancer patients. I had just been diagnosed with high-risk Stage IIIc and she had been diagnosed with Stage IV denovo (meaning Stage IV from the beginning, there was no recurrence after treatment for an earlier stage). By the way, being diagnosed Stage III or IV from the start is not a failing of the patient not “finding it early” enough. Both Beth and I were too young for mammograms and had extremely aggressive cancers that popped up out of nowhere, despite self and doctor exams. Also “finding it early” is no guarantee of a cure – lots of Stage IV patients recur after an initial Stage 0, I or II diagnosis.

I followed Beth’s blog from her initial diagnosis of only a few bone mets (incurable but potentially survivable for many years) to progression throughout her organs to the relentless march of cancer through her body that has been resistant to every treatment regime, prescribed by talented doctors, thrown at it. And along the way, I learned so much from her.

I was reading her old posts last night, trying to make sense of why one person’s cancer can be so well-behaved yet another person’s can go completely off the rails despite the same treatment. Of course there is no real explanation. But I came across this post, which hit me in the gut. Beth is right, old IS fucking beautiful.

I had never thought much about being old-old, but I have in the past looked very forward to grown-up, domesticated life with a wonderful husband and children. It was something I got really excited about when I was younger. My parents have a great marriage and I had a wonderful childhood, so it was something I thought would be a great time in my life. Get married, enjoy a year or two of newlywed bliss, have three kids, and spend our days enjoying family life. At 28, when I was diagnosed, I wasn’t quite there, but I felt like I was finally getting closer.

My boyfriend at the time did become my husband and we enjoyed our first year of married life as much as we could in between chemo infusions and radiation appointments and my regularly scheduled meltdowns about progression/recurrence, but we had lost the innocence most newlyweds have. Kids? Having three is out the window. We still hope to have one via surrogacy, but if we succeed, that experience will be marred by constant wondering how much of his/her life I’ll be around for.

Of course I wish for a cure, but I also would be happy to see this disease become a chronic one, where, even if I had to take pills and have infusions and injections, I’d still have a good chance at a normal lifespan. Where this disease would no longer steal decades from people. But there needs to be a shift in our priorities regarding breast cancer for that to happen. There needs to be less pink and more research. Beth worked so hard for that. I will honor her and keep moving forward with what she started.

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Belated #metsmonday – Losing friends, losing decades

One thought on “Belated #metsmonday – Losing friends, losing decades

  1. Well done, Amanda. The “pink stuff” creates awareness (wish there was more of it for prostate cancer), but it doesn’t create solutions. Only disciplined research does that. Hopefully we will see more aggressive oversight and peer review of current research to make sure money generated by the “pink stuff” is finding it’s way into tangible results instead of administrative pockets.

    Liked by 1 person

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