Survivor’s Guilt

“If they say
Who cares if one more light goes out?
In a sky of a million stars
It flickers, flickers
Who cares when someone’s time runs out?
If a moment is all we are
We’re quicker, quicker
Who cares if one more light goes out?
Well I do”

– Linkin Park, “One More Light”

I’ve loved Linkin Park since I was an angsty freshman in high school, because you know, I was so emo being a privileged white girl going to Catholic school – LOL. But I loved Linkin Park’s music, and I was thrilled when I got to see Chester Bennington perform on Fremont Street a few years ago when he briefly fronted for Stone Temple Pilots. Chester’s suicide definitely hit me, so when this hauntingly prophetic song came out, I was taken aback for many reasons.

The song was obviously written about suicide, and I have lost a few people tragically over the years to suicide. But, it also in my mind applies a lot to survivor’s guilt, which I’ve been feeling heaps of lately.

There is no rhyme or reason why a certain cancer treatment will work for one person and fail for another. There’s genetic explanations for this, so I’m oversimplifying things, but really, as I’ve said to many people, cancer is a crapshoot. I’ve seen people stay stable on the same drug for 10 years, and I’ve seen others with the same type of cancer cycle through 6 different treatments and die. It doesn’t make sense most of the time. It’s why good oncologists won’t give you a “deadline,” because while they can tell you what their educated guess is, they’ve seen crazy things happen.

I have been part of an online support group for childless stepmoms (stepmothers with no biological children) for several years, so it’s not likely to surprise anyone who knows this about me that I joined an online support group for kidney cancer patients. I didn’t at first, as I needed time to absorb things and then to recover from my nephrectomy, but once I realized that I needed further treatment and that this was going to be a marathon, not a sprint, I signed up.

Being a control freak, I needed to understand the ins and outs of my disease, my treatment options, and the other important things you need to figure out when you have cancer. Knowledge gave me if nothing else a false sense of control and power over this. It helped pull back the curtain. I may not like what I learned, but it took the mystery out of it, and by taking away the mystery, it took away some of the fear. The nurses who are responsible for my clinical trial have often remarked I’m one of the most knowledgeable patients they have. I don’t say that to brag, but because I think it’s important. I don’t need them to dumb down things for me too often anymore. It also helps me make informed decisions about my care.

But the price to pay for this knowledge can be high at times. The cancer forum, as I call it, stays pretty clinical most of the time. We focus on treatments, side effects, which doctors are the best to go to, etc. Occasionally though, we talk about ourselves. I know about most of the active members’ spouses, children, and grandchildren. We celebrated a few days ago one of the members’ children passing the bar. Our personal lives can’t help but seep in sometimes, just how I got to know the women in my stepmom group. For several years, I have stayed in the group even though I don’t need stepmom advice for the most part anymore. They’ve just become friends.

With my cancer forum, I’ve gotten to know some of the members the same way. Which is why deaths are so hard. If I had to guess, we lose about 2-3 members per month. It’s hard. It’s depressing. When I first joined, it was scary because I was just joining the clinical trial and didn’t know if it was going to be my own obituary being posted soon. Now, it’s upsetting because I usually know the patient, either because he or she posted or his or her caregiver did.

The worst for me has been a member who was only a few years older than me. That would have been hard enough, but he had actually reached out to me a few months ago because he was starting Cabo. He was diagnosed about 6 months after me and we had a similar but not identical “met path” (path of our metastasis). He asked me about side effects, previous treatments if any, if I had tried anything like supplements or diets that maybe boosted my complete response to Cabo. We exchanged a few messages back and forth, I gave him advice and wished him well. Told him if he needed anything to not hesitate to reach out again. He shared how desperate he was for something to work because he had a wife and very young daughter he wanted to be there for. We talked some about parenting with cancer, and I told him I’d be praying for his recovery and for his family, that I knew he had one of the best RCC oncologists there is and I hoped Cabo worked well for him.

I didn’t hear anything more, and I had just thought that I needed to reach out and see if he was still on Cabo when I logged into the forum to find a notice about his passing.

We have come so far with treatments for metastatic kidney cancer, and yet we still have so far to go and so much to learn. We’re lightyears ahead of where we were just 2-3 years ago, and that’s amazing. But there are still people dying every day.

I am so very grateful for my complete response. Oh, how grateful!

There but for the grace of God go I…..

 

 

*photo from Linkin Park’s music video*