I have been providing care to others literally since I was two years old, according to my mother. From taking care of my siblings, to camp counselor, to school teacher and then working in non-profits to raise money, becoming a pet sitter, until I moved to Florida to care for my own aging parents. So, when I was diagnosed two weeks after my father’s death (October 1, 2021) with a very rare (only 2500 cases a year in US) eye cancer, I was floored. It has been hard for me to talk about. It has been a secret I have kept from all but my closest family and friends. And now I’ve decided I need to share… because what I’m going through cannot be unique. This is a difficult time for me. Plus, I want to encourage other people to get their eyes checked every year so you can find these things early and have a good outcome!
My choroidal melanoma will be treated surgically on February 1, 2022 by having a gold cup (plaque) filled with radiation seeds sewn into my eye. I will live with radiation in me (like a Marvel superhero, I see lasers flashing from my eyes!) until February 4th when the plaque will be surgically removed. No one can be near me for four days because I will be radioactive!
The side effect list is long. I am most blessed that I found this cancer early and that the location of my cancer “freckle” is in an optimal place for good outcome. There’s an 85% survival rate for this location and size of my cancer. I am very optimistic that God wants me to survive and do more work helping my fellow caregivers. I am needed as a manuscript strategist/writer to still help others share their memoirs and lessons with the world. So, I feel like all will work out well. But that doesn’t mean I’m not scared out of my mind when the lights go off at the end of the day and I lay my head on the pillow.
What scares me the most, what makes me uncomfortable, is asking for help. When I am the one who is there for others so often, how do I let go and accept help? I will be unable to see for a week or more with patches and masks over my eyes. I cannot bend over or lift anything for a month after surgery. I cannot get dust or dirt in my eye. I should avoid sneezing or coughing or even pooping too hard, which all put pressure on the eye. Thus, I can’t be near anyone with flu or covid or anything else and I have to eat a good, healthy diet.
I will need help with food prep, medication administration (including drops in my eyes), and keeping people away from me. I need a ride to the hospital and another home again. I need help getting to medical follow-up appointments. And I likely won’t be able to see the computer clearly for some time.
My sister is coming from New York to take care of me for the week after my surgery. She will be my eyes and a guard dog of sorts.
My friend Denise has said that she will come after that if I am unable to manage on my own.She just lost her mother a few months ago and I’ve been helping her through that devastating emptiness after 20 years of caregiving.
The thought of being dependent on others going forward is disconcerting but along the lines of everything happening with a bigger purpose… maybe it’s helping me to understand what aging people feel about losing their abilities to be independent? My empathy is kicking up a notch. “It’s not the person – it’s the disease” I have advised people to say/think when their loved ones become irascible and uncooperative. Can I think that way about myself? I am still all the good things I’ve always been (and yes, the bad parts too I suppose), but I will no doubt be cranky and frustrated, exhausted and anxious, while I am going through all this. My good humor and optimism will be challenged.
You’ve heard that doctors make the worst patients, right? I can see that now.What do we caregivers do when we can’t care for others and need care ourselves? I have always advised caregivers to break down everything they do into smaller tasks so they have a list to assign others to help when someone asks “What can I do to help?”
I am using all my logistics and organization skills to create a team of people that I feel comfortable can help me.
- I requested homemade chicken soup from a neighbor.
- My sister-in-law got me pajamas for the hospital because that’s what I really needed.
- Asked a friend to drive me to my pre-op meeting. And others to help me with follow-up doctor visits.
- I’ve got two friends on call to pick up groceries.
- I’ve asked a building friend to project manage the construction around the terrace of my apartment without me.
- Delivery services will help with Rx refills and pre-made food.
- And then I will stay with a friend for two months to heal.
Each time I ask for help, my eyes fill with moisture. Each time someone offers their help, tears flow. I am so grateful for the generous responses that my body cannot contain it. And somewhere in all of this, I am maybe starting to feel worthy of allowing others to help me because I am hearing that my friends and neighbors feel so good being there for me. Imagine that? It isn’t about just me, but about what gives others purpose and good karma and feeling of being valued. I caregive and feel valued so why is it hard to understand that others enjoy the same? Lightning bolts going off… and not just inside my eyes anymore!
I will write more about this journey of learning to make time for myself and allow others to care for me. I hope I can encourage you to do the same.