Highs, Lows, and In-Betweens
It’s been a buckle-up wild ride the last two weeks. In the essence of being authentic and open to this journey, I skipped a blog post last week until I felt clear-headed enough to write again.
To begin, we enjoyed a weekend getaway to Disneyland on the first weekend of June. It had been planned prior to my diagnosis, and I felt fine. So why not? Get away while we can…
Turns out, our little retreat was, like everything these days, the perfect timing. Something that felt “normal” for Henry. And in doing so, it helped relax him a bit about all that was going on.
As we drove down to Anaheim, I slipped my beanie off, wondering how long it would take him to notice.
3…2…1….
“Mama, why’dya take your hat off?” I heard him say from his booster seat behind me. I couldn’t help but smile. He never misses a flipping thing.
“Because my head’s hot and needs some air,” I said, nonchalantly and cheerfully. I waited. He paused, processing the options, and ultimately didn’t press it.
Hmm. A small baby step, I thought. This, in and of itself, was a bigger win than I’m letting on. He has politely asked that I keep my hat on pretty much at all times since the shaving party occurred.
Later that evening, we were celebrating our little getaway with some music and mocktails and chocolate milk. As I unpacked, he walked up to me.
“Mama,” he said softly, but confidently, “I think I’m getting used to your baldness now.” I looked down at him. In his face, I saw a subtle mixture of pride and relief. I also noticed he was looking at me, not my head.
He was finally seeing his mom again.
I tried to be breezy, but inside I was doing a crazy victory dance.
“Yay, Henry, that’s great!” I said, hugging him tightly. Worth the whole trip, right there.
We made sure we wore masks everywhere. Double bonus: I qualified for Disability Access Service (no lines for us!) and we also rented one of those hilarious electric scooters to cut down on walking (Bob and I fought over – I mean– took turns). Plus, Gabby came with us, so it made it all super easy. I even rode the Incredicoaster… felt fine! Gave the 🖕 to cancer in my photo! (p.s. For reference, I’ve never flipped anyone or anything off before. But, considering the recipient, it felt uniquely appropriate.) We made sure we took it super easy, sticking to Star Wars Land most of the trip and only a couple of hours at a time. Lots of laughing, snuggling, Star Wars character photos, and Dad/Henry lightsaber battles. Disney is always great for a good distraction, that’s for sure.
We drove home Monday night, only to turn around the next morning for chemo in Santa Barbara followed by a drive back down to LA to meet with a possible surgeon for my future hysterectomy. On top of that, it was my big treatment (two different chemos plus immunotherapy) that happens every 21 days. I was beat by Tuesday night.
The Beginning of the First Bad Week
Wednesday, I felt fine. Thursday, I began to feel crappy but had to rally because it was Henry’s last day of school.
Friday, I was downright flatlined. Nauseous. Couldn’t eat or drink anything. Splitting headache. My blood pressure tanked to 80/50. I was starting to feel dizzy and could even, at times, feel my speech start to slur. Not good. I texted a friend who’s been through this a time or two.
To summarize her text: “Get fluids NOW. If you can’t get into UCLA, go to emergency. If you get any more dehydrated, it is not a good thing.”
I shouldn’t have let it go so long. Lesson learned. But then again, I wasn’t thinking clearly either. I called Bob with an update.
Bob immediately texted Dr. Kass. True to form, Dr. Kass replied in less than 2 minutes: “Come in now. We will give her fluids.” (Have I mentioned recently he’s the best?)
Off we went. Two hours and one liter of fluids later, I felt a welcomed hunger pang while my headache subsequently subsided. We were the last ones in the infusion center on Friday night. Thank goodness we got in when we did.
My M.O. is that I tend to just muscle through things, but I can’t take this approach with chemo. Seal Team Six is doing warfare inside my body, and I must maintain an amplified sense of humility because of it.
Additionally, my nutritionist (Dr. Heidi Lucas) prescribed some new supplements and gave me some tips to help support my body.
Use Days 1 & 2 [after treatment] to prepare for Days 3, 4, & 5 [when symptoms usually occur].
Put a pinch of salt in your water to help increase magnesium (Taxol depletes magnesium) and support your blood pressure. Also, take Epsom salt baths for increased magnesium and relief of bone aches.
Keep your lymphatic system flowing to eradicate all the dead cells (cancerous and otherwise from the chemo) through gentle exercise, yoga, and even ten minutes of gentle bouncing on a fitness rebounder.
I had my fifth round of chemo yesterday and remain vigilant to stay ahead of the curve going into the rest of this week. I’m doubly motivated because I’m hoping to go see friends show at the Region 2 Arabian Championship Horse Show in Santa Barbara this week, head scarf and all!
A Good Note to End On
We continue to receive so many thoughtful, inspiring, and precious notes, care packages, veggie juices, cards, etc. and they truly mean so much!
I wanted to highlight one this week that was especially meaningful. Henry received a package and a note from Bob’s niece, Erin, & her husband and two boys, in Michigan. With Erin’s permission, I’d like to share their note with you today:
Included were T-shirts for each of us. As a mom, it means so much to witness the different, unique ways people find to encourage not just me, but also – and in some ways more importantly – both my boys. If you know someone going through a difficult chapter, upholding his/her spouse and kids is a wonderful and meaningful way to show your love and support!
A few concluding thoughts for the week:
It was heartwarming to see how much the head-shaving party video resonated with so many people.
We enjoyed having my sister, Marcie, and her husband and kids in town this past week for great cousin time, despite all my ups and downs.
I continue to receive White Blood Cell booster injections three days a week, directly following infusion day. We are hoping insurance will allow us to do these injections at home, as driving to Santa Barbara four days a week is exhausting. Please pray insurance will approve this request.
My energy levels seem to be steadily declining, but I continue to hope that, with proper support, my body can at least ward off major symptoms like last week for a while longer.
If you have any questions or suggestions on blog topics, let me know!
Thank you, as always, for your ongoing love, prayers, thoughts, & support near and wide.
Still choosing joy.
With love,
Evie
