Facing loss – published to select friends on Facebook September 26, 2020

My dear son,

I wrote about you so often on Facebook, but since you didn’t indulge in social media, you never knew – unless I told you. Two years ago today I posted this for just friends and family, and it came up in my FB Memories today.

I can’t believe it was only two years ago. It seems like a lifetime. It seems like you’ve been gone for years and years. Sometimes you seem like a dream. But I know the pain I feel in my heart and the hole in my world is no dream. I know that I carried you and birthed you and raised you and love you. I  miss you so much. I miss you so damned much.

mom
xoxo

Facing loss
In July, 2001, I sat in the ER at Oregon Health & Science University here in Portland, with my oldest child. We’d just been told that Martin had cirrhosis, and he slept peacefully under sedation while I waited to find out just how bad it was. He’d been experiencing some abdominal pain and some gastric upset; but it was the pain that had brought us here this night.

Martin had never been a heavy drinker, and his medical and social history gave no indication of what had caused his liver to become cirrhotic, so it was termed “cryptogenic” – which meant there was no way to know. A medical shrug of the shoulders. As it turned out, it wasn’t bad; he was told to stay away from alcoholic drinks, given a couple of prescriptions, and sent home with instructions to have it monitored.

In the intervening years, I didn’t give it a lot of thought, and I really don’t think he did, either. He was young – in his 30s – single, handsome, and living life to the fullest. He lived here for a while, moved back to Miami for a while, lived in NYC for a while – my peripatetic child, grabbing life with both hands, wringing as many adventures and having as much fun as he possibly could. In 2010, he, along with is brothers, walked with me to “give me away” as I joined my life in marriage to Jim. In 2013, when Jim died, Martin and his then-partner were here in my home when I got the call that Jim had died. They drove me to the nursing home where he was, and they, along with my sister, stayed with me through the night till the funeral home came. He was staunchly by my side during those dark days following, a strong arm to lean on, a comfort to me in my grief.

Over the years, we’ve had our differences and our arguments. We love each other deeply, but we don’t do well living together, and when he moved permanently back to Oregon, he lived with me more than either of us was comfortable with. He kept my garage – and my life – in constant disarray with minor and major car repairs until I wanted to scream in frustration. He worked only sporadically, and last year he became unable to hold down a job because he was chronically exhausted and couldn’t seem to stay awake. He went back to the doctor, where a CT scan revealed that the cirrhosis had permeated his liver. Worse, he had developed a small cancer of the liver. In October, he underwent a targeted treatment called TACE, where the cells were surrounded by a “bubble” of chemo. The doctor felt certain that it would get the cancer, and a subsequent CT scan revealed that it had. We were cautioned, however, that cancer would recur, and that he’d need to have twice yearly scans. He applied for, and was granted, SSDI.

Then, this July, a routine scan, followed by an MRI, revealed that the cancer had returned – and that it was no longer small. Initially there was a plan to treat it with two recently approved therapies, both of which would have serious side effects, but it was his best – perhaps his only – chance to beat it. We then got the news that the cancer had spread outside his liver, so these therapies were no longer an option. We made an appointment with a radiology oncologist in the hope that radiation would shrink the cancer enough to allow for other therapies. After much poking and prodding, answering the same questions over and over again, we were told that radiation would only further damage his already fragile liver, and could only be offered to control pain. And that it had grown to a size that was outside the scope of national guidelines for a transplant. His prognosis was six months to two years.

Our one ray of hope was the cancer clinic at University of California-San Francisco’s cancer center, where they apparently take transplant patients on a case-by-case basis, notwithstanding the national guidelines. So we began to investigate that option, and were in the process of finding out how much of the cost of a second opinion, diagnostic tests, and potential transplantation his insurance would cover.

Then, last Friday evening, September 18, he called me from where he was staying, suffering intractable pain in his abdomen and right shoulder, and complaining of shortness of breath. The oxycodone that had been prescribed for him just ten days earlier wasn’t even touching it. I took him to the ER, he was admitted to the hospital, and for the first time we learned just how large the cancer is (about 2” x 3”), and that it had increased in size since the scan just two months earlier. The doctor said the shortness of breath was likely due to the cancer pressing on his diaphragm, creating pressure against his lungs.

He was discharged on Sunday, and I began five days of frantic calls to doctors and social workers, trying to expedite the second opinion and possible treatment at UCSF. Today we learned that there is no chemical treatment that can help, and that the cancer not only is growing rapidly, but appears to have invaded his portal vein, which is the most feared complication. It also effectively ends any hope of transplantation. All the finest, most renowned hospital and medical professionals in Oregon can offer at this point is radiation. It’s not offered as a curative treatment, but only an attempt to shrink the cancer enough to take the pressure off of his diaphragm and off of the many nerves, relieving, they hope, the shortness of breath and some of the pain.

And so, here we are. My oldest child, the child I wanted from the time I understood that girls could have babies, is dying, and the prognosis has shrunk. To what, we don’t know. We’re taking each day as it comes. He sees the radiologist next week to begin palliative radiation therapy. We’re closer than we’ve ever been, except, perhaps, when he was a newborn and completely dependent on me. I find that all of the arguments, all of the frustrations over the years, don’t matter. I’m thankful that he has lived a life filled with adventure and excitement, that he has memories that most of us only dream of.

He is angry and sad, he sleeps most of the time, he has his cat for comfort. His family surrounds him with love. My church family and many of my friends surround all of us with prayer. All I can be is that which I always wanted to be: his mom and his advocate.

He just turned 50 in May.

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