Anonymous

September 2022

We’ll jump right in — I found my cancer (thereafter called “the beast”) when my belly grew hugely distended and bloated last summer. I knew something was wrong (too late for kids!); so, I went to Urgent Care the next day, and that started this crazy journey. Thank you, hubby, for pushing to go right away and not procrastinate! Some beasts grow at a rate of 0.86cm a year. Don’t wait for anything to be the right time.

We all know the relevant words and treatment names — who knew omentum and gynecologic oncologist? — so it’s a strange club. But organizations like OCAOSW (Ovarian Cancer Alliance of Oregon and Southwest Washington https://www.ovariancancerosw.org/) are one of those somewhat ephemeral things that are critically important on the ride. Even if you are one of the “I don’t do groups” people (I definitely was), trust me, and do it! You will need all the support and first-person discussion you can get. I met my “Ovarian Support Twin” (OT) virtually at an OCAOSW meeting, and we have helped each other immeasurably. You’ll see.

The results of my biopsy were available for 5 stressful days before my doctor finally called to tell me, “Oh, yeah, you have cancer. It’s as bad as it gets.” And then, literally, started giving me smoothie recipes. I had a million questions, and I wanted to act immediately. She did not communicate for days and weeks, and the clincher: she declined to do surgery because “There is nothing else I can do.” Of course, here is a critical juncture where I changed doctors and, among other things, had a successful surgery. (This is not to malign the doctor. I may have been miscommunicating, confused, etc. but her slow and downbeat manner did not fit with my style.)

IMHO (in my humble opinion): The key is to put together a team that you relate to — there is no “one size fits all”. My OT had the same experience with her doctor, and that helped me to fire mine and get her off my team (the doctor, not the OT :-). I should add I was encouraged to seek out another physician by this (OCAOSW) group (Thank you forever! You know who you are.) I firmly believe if the beast flies out for a while or forever, it will be due to finding this match. Moral: make the team your team. There is science, and there is psychology, communication, stress, and all those other things that affect your health. This situation put a knot in my stomach every day for weeks; I was more stressed by the situation than being ill at that point! I am so happy now with a true team working together to tame the beast or show it the door.

One comment about day-to-day. We all have day-to-day ups and downs even without the beast. I find that fatigue is a biggie for lots of us. I also can’t stop sleeping, and I am normally a super active person. Here’s the trick that works for me. Sign up for activities and events. Just one at first. Choose a time when you wished you would get up. Just like dieting, don’t go crazy, just a small step forward. Mine is noon. You will have to get up! This is especially true if you also don’t have kids or work. I picked Parks and Recreation classes (https://www.portland.gov/parks/register). Almost free, they have a plethora of classes in subjects ranging from art to Zumba, with lots of classes specifically for over 60s. Once I get out, I totally transition to normal! All the cues are there to be normal. At least you are not calling for appointments, getting tests, or filling out forms. By the way, going to the pharmacy does not count 🙂 Try it! It works!

And, if you can push yourself a little, take a trip. Start small. Bed to bathroom is too small 🙂 I didn’t understand at first how someone could travel anywhere. Nausea, fatigue, how could you carry luggage? But you know, a little later I did go on a trip, by myself, to Hawaii (where I used to live so it also had the “home” feeling). Being in the water in a small lagoon where you could look down and see bright fish flitting about was intoxicating and wonderful. I am a sun person, and it helped immensely. In fact, my (non-beast) friend told me *she* enjoyed just hearing about it and seeing pictures — that it picked up her day! So, you have to go to Hawaii to help your friend 🙂

Every day stop for a moment and look around and think of the good things. It’s not a novel idea, but smell those roses! Look for the tiny bluebells hidden behind the big rose bushes as well. Yesterday, I was blissfully happy to be in a bed with an electric blanket watching my rabbit hop around 🙂 That made me smile. For today. There will be a new one tomorrow — can’t wait!