The day before
On Tuesday, before my first infusion, I wanted to get out and do things I wouldn’t be able to do for a while. So a friend and I went around and had breakfast at Good On Ya in Encinitas, where I ran into one of the girls’ beach volleyball coaches, walked over to the nearby Meditation Gardens, walked down to Swami’s beach, and stopped into Patagonia, where we saw another volleyball coach (pro tip: if you’re in the market for a volleyball coach, go to Encinitas on Tuesdays).
I just wanted to see a bunch of beautiful things that day. All is well in the world when you’re looking out and seeing this:
Neither of us (embarrassingly), has ever walked down to Swami’s Beach either, and it was so private and peaceful, it felt like a secret getaway:
It was a great last day filling my heart with wonder and beauty before filling my body with toxins. And thanks for all the flowers — I’m enjoying the heck out of them before I’m banned from them (and gardening!) for the second week of the cycle.
Infusion day 1
Did anyone else pick UVA to win it all in your March Madness bracket? Well, at least Duke still has a shot. Which would make me happier anyway. Go Blue Devils!!!
I’d heard that the first access of your chemo port was particularly painful, so super grateful when a friend gave me a tip to ask for a lidocaine prescription and apply it 30 minutes beforehand. Painless poke. I know you’re all wishing you had a resealable valve in your chests right now.
I used an old diaper bag to prepare a days’ worth of snacks, entertainment, and hydration. I was glad I did when I walked by the magazine rack and saw an assortment of publications there that were comparable to the most prominently featured Diabetes magazine.
The chemo people told me to hydrate — it makes a big difference in how you feel — so I am HYDRATING. I am the same person who in elementary school was so proactive about wiggling out my baby teeth for efficiency’s sake that I removed a permanent one (my dentist encouraged me to channel my energies in more productive ways going forward). Anyway, Plant Nanny is a great app (for anyone, not just patients) that gamifies hydration, and you get to feed a cute little plant you can name (I’ve been telling all the oncology folks I see about it):
I also downloaded ChemoWave, which is a helpful app for patients where you can track symptoms, medications (I need it to keep me on track with the crazy schedules), and how you feel on which days of the cycle so that you can better plan your life.
Sacha brought me to the Infusion Center and stayed for a bit while they took my labs…then an amazing friend who I only met because I had cancer came and stayed with me for most of the time, taking notes on my meds, asking for blankets and pillows, buying me lunch…it was nice to have a pro along for my first rodeo.
Because it was my first time, they gave me a primo spot by a window. It was so nice and private and lovely.
One of the medications isn’t one they typically administer, so we had to stop at one point to wait for someone to run around looking for it at the in-patient facility. It’s the one that goes in within 30 minutes before the the infamous Red Devil, so they wanted to be sure they had it on hand before starting. Below you can see the Red Devil in action being rapidly injected. Note the friendly warning on the red label.
At one point they stopped the infusion because my heart started racing, and I was really hoping that it wasn’t an allergy to the dacarbazine which is a key part of the regimen. Luckily, we think it was the steroid they put in, and it calmed down by the time I left. I don’t even drink much caffeine so I’m sure my body had no idea what to think of the steroid.
Here I am eating salad to help me restore my healthy cells!
Everyone said that the steroids amp you up and give you tons of energy, but I was actually pretty tired afterwards and took a nap in the early evening.
They gave me a patch with a pump which will start injecting some other meds into me starting at 5 PM tonight. Last night I kept seeing these flashing lights that seemed to change direction whenever I turned. I thought I was losing my mind. Turned out it was just the flashing light on the pump on my arm.
The first 24 hours is supposed to be the best, so we’ll see how it goes from here. I’ve spent the day getting caught up on things that require actual brain processing power, because I’m not sure what the next few days bring. I’m told that the first cycle is the nicest…but it gets progressively worse each time as the toxins accumulate. My regimen is an aggressive one, so they gave me four different nausea drugs which I am taking religiously…but apparently you can get some on this even a couple of weeks into the cycle. So far all good today.
The bright side
Ok first of all, in response to all the demands to see the stripper wig — I hyperlinked to the actual wig’s online listing in the previous post. The only other pic I have before I cut it is one with one of my kids wearing it, and I asked if I could post it and she was like no, it’s a violation of my privacy, and I said I HAVE CANCER LET ME POST IT and she said I could only do it if I blurred out her face AND her body which destroys the whole effect of the picture, so I said face only and she said I WILL REPORT YOU. Those of you who know my girls will know exactly which kid that is.
I really don’t need any more problems right now, so just go to the hyperlink.
I smell like Whole Foods
Second, one of the things I have heard so much which makes me so happy lately is that many of you have made lifestyle changes because of my cancer. I really hope this means you will never have to have cancer. But if it’s helpful, here’s a list of practices I’ve implemented. Keep in mind I’m not likely to have done all of these when I thought I was just a normal, healthy person, but I’m kind of putting myself into a zero risk zone at the moment. Again, everything I’ve ever mocked I’ve now become:
- I stopped using the microwave altogether. Sacha measured the radiation emitted from our microwave and it was alarming, even several feet away. And, it changes the chemical structure of foods, so who knows what that does. Now I warm things up in the oven or on the stovetop. It’s less work than it sounds.
- I try only to buy organic produce, and even then I wash the pesticides off using the water and baking soda method. I admit to you, Chinese mothers everywhere, I was wrong and the Chinese newspaper was right.
- The only non-stick pans I use are those from Scanpan, which are ceramic and titanium (inert) and the only ceramics I’ve found that perform as well as if not better than the traditional Teflon non-stick pans. Teflon, you don’t want that in your body. Apparently it’s so prevalent that traces can be found in most Americans’ bodies.
- I don’t drink water from plastic bottles, or store foods in them unless I need to because I’m on the go. There’s an environmental component to this as well. And, this one I’m not very good at sticking to because it requires energy — I try not to put plastic containers in the dishwasher.
- I read up a lot on diets: vegan, ketogenic, whole foods. All have interesting and compelling arguments and reasonably defensible studies behind them (I am a tough critic on studies as you know by now).
- Before chemo, I focused on having a plant based diet, making sure I got plenty of protein and fats, and having just occasional organic animal-based proteins since those tend to be more inflammatory — and with cancer, you want to limit inflammation as much as possible. Any of those diets probably work relatively well for a healthy person.
- Now that chemo’s started, all cells, cancerous and healthy, are being killed off, and most of all my body needs nourishment — so I think I’m moving more toward the whole foods diet, because there’s a greater variety of nutrients to replenish. The Godfather says during chemo he is a fan of the “See-Food” diet — when you see food that you like to eat, eat it. The most important thing is getting food into your body, especially when it can be hard. So I’m relying on my body to let me know what I should be eating. I’m learning to listen to it more.
- I’ve always talked to my cells, especially when I’m sick, just asking them to do specific things for me. Now that I know a bit more about this cancer, I give them really specific instructions for my T-cells not to be fooled by the sneaky sarcoma cells. But I learned that I’m not the only loon who talks to my cells, and there are great meditations on YouTube that I use a lot. I’m not necessarily recommending my cell-talking ways to everyone, but I do think meditation is a great thing to do. One app I use frequently is Simple Habit, which just happens to be founded by a Duke grad, and which can be used really effectively during your workday or going about your business whenever you need some focus or relief.
- I’ve started incorporating qi gong, which has roots in Chinese medicine, into my exercise regimen — mostly started when I had the chemo port surgery and my range of motion was limited. I figured, why not move my qi around a bit and see what happens. This is my favorite video, because all these random people walk past this girl who’s filming and stare at her, and she can’t help but crack up.
- I limit what I put on my skin: the only moisturizer I use now is olive oil. For years now the only deodorant I’ll use is Native, which is the best performing aluminum free one I’ve found. They were recently acquired but maintain good quality.
- I carry a triclosan-free hand sanitizer and wipes wherever I go. This one is my favorite.
- I don’t use soap or shower gel that has any hormone disruptors. I like the Dr Bonners Castille soaps, which have 18 uses listed on the bottle (detergent, shampoo, etc) and a little goes a long way.