Lacrosse, sushi and that's a lot of prescriptions in the Walgreen app
(Inspired by my Caring Bridge post from the week between diagnosis and treatment start)
January 16, 2023
All I wanted was to feel normal. I wanted a break from the thoughts spiraling in my mind about what the treatment would feel like, what side effects I might have, or, G-D forbid, what if it doesn't work? There is a limit to how much TV I can watch without feeling like a mound of mush…so I am eager to seek out other forms of distraction.
My kids are all athletes with varying levels of commitment and competitiveness. Our youngest loves lacrosse and is a (somewhat) rare left-handed attacker. Watching her being aggressive and also supporting her teammates makes me happy. Long before my cancer diagnosis, she joined a travel lacrosse team, and they scheduled to play at Sandstorm in Palm Springs. My niece, a collegiate lacrosse goalie (NESCAC Goalie of the Year 2023 - we're not a little proud), said Sandstorm was her favorite. We planned for Ariel and Neal to go while I recovered from surgery, as I would have other family caring for me (I think it was supposed to be my mom). As my surgery was indefinitely postponed pending the response to chemo, my choices were to stay home, alone in the house, with my spiraling thoughts OR get myself to Palm Springs and be distracted by the chaos, magnitude, and display of health through athleticism on the 70+ across fields. Luckily, I could do it with some work on Google Flights and help from my husband's mileage account. I met them in Palm Springs - they had driven there the night prior.
Before I continue, I'm fortunate and privileged that I could distract myself with a trip. I would hope anyone suspended in the "waiting" would be able to find some way to be distracted - religious observance, family togetherness, enjoying something in nature - mine happened to be a lacrosse tournament, and I was lucky that I could afford to travel to it instead of being alone for the entire weekend. My older children are away at college. I'm sure if I had stayed home, my friends would have rallied to keep me distracted there, too - but my nights would still have been alone, and for me, nights are when my mind races. It helps to have my husband nearby and to be physically exhausted.
Since Neal and Ariel were already at the fields with our car, I took a Lyft from the airport to the polo fields and was dropped off at the main entrance. Unfortunately - they were about a mile away and moving, according to Life360. Before arriving at the fields, I got an automated Walgreens update and checked the app to see what was ready.
Like an idiot, I looked at the notifications.
Damn...there are a lot of things in my Rx that I do not recognize.
Am I going to need all of these medications?
How will I keep track of all of these medications?
Do these medications interact with each other?
How do I “test” to find out which medications work for me?
My mind was off the races. And standing in the parking lot of a massive polo complex, I started to cry. I hate feeling out of control. I was well prepared and informed about what was to come. These medications were unfamiliar - I didn't recognize any of the names. That made me feel vulnerable and weak. I felt incompetent, which then made me feel bad about myself. And I go from 0-60 mph on those feelings instantly when I feel out of control.
This entire journey is an exercise at tolerating the feeling of being out of control and learning how to reset those feelings into something, anything, more productive than self-critique. But standing in the parking lot with more than 10 alerts on my phone from Walgreens and having no idea how I would find my family (while dragging my roll aboard), I felt overwhelme’t know how to reset and find my equilibrium again.
I felt stupid for crying. And I felt stupid for feeling overwhelmed. The self-criticism wasn't helping me solve any problems. I'm arguing about pulling myself together and dealing with the issue versus allowing myself to feel bad that this was happening. My emotions were basically beating up my mind. I'm a world-class problem solver, and I was paralyzed because of Walgreens alerts and what they unleashed from my pent-up emotions.
I didn't have illusions about what was happening, but those alerts made it real.
An idea popped into my head - call Heather. She’s a doctor. She’s a survivor. She’s offered to help anytime. And she probably won’t be rattled by me being irrational and emotional.
Joelle (text):
Lots of weird prescriptions getting filled. I know that starting off the only way to finish, but makes it more real
Heather:
It is a lot to take in…. Do you want to talk?
I called her. It's one of the benefits of having people in the dugout, and especially lucky for me is that Heather is an excellent doctor whose work is oncology drug safety. I had a hotline to someone knowledgeable who could explain the generic names of medications to me on a Saturday. I could have called the Nurse Advice Line, Googled all of them, or researched links on MyChart or a cancer site like the American Cancer Society, Breastcancer.org, or Sharsheret, except that I was walking around the Polo Grounds crying to myself and trying to find my husband and daughter.
I started reading the names to her and she told me the brand names that my Chemo Teach had used - mapping the two together. And she told me I wouldn’t likely need them all but it was good to have them. She explained which ones were escalation pathways if an initial medication didn’’t make me feel better.
With exasperation, I finally found the proper welcome tent (there were three!) to join up with Neal and Ariel.
Joelle:
Found everyone and got food. Feeling better, thanks for listening
Heather:
Great! I am here for you anytime. Also, do you want me to call your Walgreens to see if they can turn off the notifications about your medication pick-up? Then you don't need to be reminded about it this weekend. If so, send me the pharmacy info.
I did send her my list of drugs.
From Heather:
Those are the exact drugs I used for my nausea. I asked my nurse when I could start the Zoftan (ondansetron) after the Emend wore off and took it no matter how I was feeling, and then took it religiously every 8 hours after that for 4 days. I would add in the Compazine (prochlorperazine) for breakthrough nausea.
I needed to stay ahead of the nausea. I will also send you some information from my dietitian about things to do food-wise to help with nausea.
I wanted to stay ahead of the nausea, too. My memory of the first chemo treatment for my sister frightened me for myself, my husband, and my daughter. There was no escaping how sick my sister's first treatment made her - and her reaction lasted for 2-3 days. I felt really dumb for not having done the surgery a year earlier and avoiding all of that mess.
Heather was really a lifesaver or at least a mind-save at that moment.
Joelle:
Thanks. Did you start the compazine?
Heather:
I did use the compazine quite a bit. I didn't use the meds from the start for the first cycle and learned my lesson from that! I was better with them going forward. I think my 3rd, 4th, and 5th cycles were the worst symptom-wise, maybe because the side effects were somewhat cumulative, although I am not sure that was a thing, and my cycles 6-8 weren't as bad as those (although I still had side effects). For some cycles, I did start the Compazine proactively, like the Zofran.
You will probably meet with nurses, nurse practitioners, or physician assistants before you start the chemo and along the way with Dr. Chien. They will be excellent partners for you through this process! They are very knowledgeable about the side effects, will take excellent care of you along with Dr. Chien, and will have great tips and tricks for you about how to get through it.
It was over in about 10 minutes, and I felt a bit moody and perhaps silly - but there was no harm or nothing foul. And I probably get a few passes for being unexpectedly unmoored. Ultimately, I used some of the meds and not others…and disposed of them at the end.
The lacrosse was fun - something different and she played great and had the “lax tats” to show for it.
”Lax Tats” are bruises where the opposing player’s lacrosse stick struck the upper arm. Players wear them with pride.
My husband felt terrible that I was so upset about the medications and that I couldn't find him. I'm the one of us with a strong sense of direction - so this was unfamiliar ground for us both. As the games ended for the day, he wanted to know if there was anything I wanted to do to enjoy my last few days before chemo started. There was - sashimi. One of the things I must avoid once I start chemo is raw food - raw veggies and raw fish. I really like sashimi. So we found the "best sushi in Palm Springs," and I enjoyed a sashimi platter that was gorgeous and delicious. It was a small reward for getting through the day and finding opportunities to be happy while allowing myself to feel sad, out of control, and overwhelmed.
Continue the story…
