Worry doll

My father has been in the hospital for two weeks now. He suffered a sudden brain hemorrhage while out running errands two Sundays ago. He’s at a very good hospital and getting the best of care, but if anything the last two weeks have shown us how much better it is to not to have to be in a hospital at all. He’s suffered from a couple of hospital-acquired conditions which the doctors are still trying to resolve. His brain seems to be stabilizing, though, which provides some slight encouragement. Also, from the first day there, he has been perpetually concerned with making sure the bills are paid on time.

I feel grateful not to be the one who is sick, but that is most of what I feel grateful for at the moment. To say that my father is not fond of hospitals is a gross understatement. I hate that he is stuck in one for the time being. I am grateful my mom can be by his bedside most of the time, and my brothers can as well.

Living a couple hundred miles away is hard. I was there for a couple of days at the beginning, but ten days, and a million reversals of fortune, have now passed. I will take the bus there tomorrow, and spend the night in the reclining chair by his bedside, so my mom can have a break. I wish I could do more. It is so difficult, feeling pulled between two poles, between my daughter & mother roles.  I know I’m not the first to go through this, and I won’t be the last. I’m just the next in line.

When I was there last, I was casting about for something that my dad might like to fidget with, because his hands have been restless. I found this wooden figurine on his desk, and took it to the hospital with me. He wasn’t quite able to grasp it easily at that point, so I brought it back home with me.  It was been my worry doll, my reminder, my focal point. Sometimes the kids come and put it in a funny pose.

I’ll stay by my dad’s bedside tomorrow, and come Tuesday morning, I’ll get to be the first to greet him on his birthday. I can’t stay long, but I will be there, to give him a kiss, to show the video the kids made for him… and to wish him the healthy, long life that seems so far from his grasp right now.

Farewell, my friend

2018-01-13_11-Kent Island and Eastern Neck Island (and Chesapeake Bay Bridge), by Ken Lund on Flickr, licensed under Creative Commons
Kent Island and Eastern Neck Island (and Chesapeake Bay Bridge), by Ken Lund on Flickr, licensed under Creative Commons

Getting this message through the ether was the first moment I realized all of my typing here might do something other than help me:

Deborah, your blog is like a parallel life to mine at the moment – I feel stronger knowing that someone else is experiencing exactly the same side effects and riding the exact same emotional roller coaster as I am. Wishing you continued strength

This was my introduction to someone who would become my melanoma pen pal. We were contending with the same disease, and receiving the same treatment. But the similarities ended there. She had been diagnosed with melanoma at the age of fifteen — a mole on her temple. She had it removed surgically, and there was nothing else… for twenty years. It returned with a vengeance, and she had surgery to remove a parotid gland and lymph nodes. Tumors kept appearing. She had been treated with immunotherapy, as I had been. And, at the time she wrote to me, she had begun the same targeted therapy combination that I take — and was the very first person in her country to be taking them.

At the time she got in touch with me, I had been through a lot of medical and personal drama — being declared NED, and then, 24 hours later, finding out my brain was riddled with tumors. Getting a job for the first time in years, and having to leave it to tend to my suddenly declining health. I had found a therapist to talk to every couple of weeks, but didn’t have any support group I could participate in. This has been an issue I have contended with ever since my melanoma metastasized and I underwent treatments that, while absolutely mainstream, fell outside societally accepted norms of cancer treatment, simply because the general public hadn’t heard much about them yet. I was referred to places such as Gilda’s Club, but every time I picked up the phone to call them, I imagined myself walking into a support group meeting, looking the picture of health with all of my hair and no nausea… and I couldn’t do it. It seemed analogous to walking into a Weight Watchers meeting when you desperately need to lose twenty pounds, and having everyone else glare at you because they have further to go. I have since found a melanoma community on Facebook that provides the steady stream of support and treatment data points (and more than occasional heartbreak), but I didn’t know about it then.

I was so relieved to have a pen pal who echoed the very same things I was feeling:

I find that people say that I am very brave — it’s not being brave, it’s just that you really don’t have any other choice but to keep going … I am no different from anyone else, there are days that I just freeze with sheer panic and terror, other days I am angry at the stupid things people say to me, or if I’m honest, the fact that I just want to be like other people my age… with no worries.

We struck up a friendship, and we’d write each other every few months. I’d worry when I didn’t hear from her, and she was not on social media so I couldn’t passively check in. We shared vacation photos and news of our families. She was a doting aunt to two nieces. She sent in a donation for our bike ride when we were raising funds for cancer immunotherapy research.

My friend had a hard time with the side effects of our treatment, though, including one of the most common ones — fevers that would land her in the hospital every so often, and taking medication breaks until things stabilized. I fervently hope someday there will be a scientific reason for how and why these side effects happen (or, in my case, do not), and better ways to control them when they do happen.

Things took a turn for the worse for my friend in May 2017, and she was referred to the palliative team. After this point, there were many ups and downs for her, and a number of hospitalizations. I received an email from her last August, in which she reported good scan results, and was excited to be going home from the hospital.

I didn’t hear from her again. I felt strongly that something was very wrong, and emailed her on November 16, a brief note to send my love and tell her I wished her well. From the country stats I get through WordPress, I could tell she hadn’t been checking in on my blog. I periodically searched for notices online, and last night I found one: She died on November 17.

I have been at this cancer thing for a while now — anniversary hoarder that I am, I noticed a few weeks ago that April will mark five years since my initial diagnosis. You would think I’d be used to losing people, but it doesn’t work that way. Every loss is a knife. Every loss is a chasm opening into the center of the earth. On the Facebook group, which has over two thousand members, not a week goes by without the death of a member or a spouse or a child.

In a time of miracle treatments, and success stories (so far) like mine, in a time of falling cancer mortality, and even in a time where an article can be published that uses the “c” word in the headline, it is very tempting to focus on the positive, especially if you are the one with cancer, or your loved one is. And then yet another wrenching loss comes along to remind you that this is not a good business for anyone to be involved in.

I miss you, my friend. Our beastly disease struck you so early, let you live two decades with the illusion that you might outrun it, and then ended your life in such a merciless way. I hope where you are it is sunny and a lot like Italy… a place that you and I both love. Xoxo