It’s hard to believe Christmas has come and gone and we’re now in 2016. Despite having chemo on December 23rd, I managed to power through, get all the gifts wrapped and enjoy a great dinner with family. I had a goal in mind and was not going to let something silly like chemo side effects stop me–mind over matter! My mother-in-law was also staying with us so it was nice to have someone around to help with the household stuff. OK…I did pay for it afterwards and came down with a cold that got better and then came back about a week ago, but I’ll take a cold if it means enjoying my favorite holidays and spending quality time with family and friends.
I sort of equate my energy level to having a smaller “gas tank” than everyone else–i.e. if everyone else has 12-hours of “gas”, I may only have 6-8 and need to keep that in mind when making plans. I don’t feel tired or uncomfortable in the moment and am able to keep up with everyone else, but there always comes a moment when I just know my tank is empty and it’s time to take a break. It’s almost like this big wave of fatigue hits me and doing anything other than lying in bed seems impossible. Case in point: our good friends Adam and Jori came to visit us last weekend. We had an awesome day that started with brunch at Black Pig, moved on to us exploring the West Side Market and walking around Ohio City (that’s the 4 of us in the photo on the upper left), and wrapped up with a delicious dinner at Edwin’s in Shaker Square. It was probably one of the most fun days I’ve had since my diagnosis in October but by dinner’s end, I just knew that my tank was spent. That said, I’m grateful to have whatever energy I do have and I don’t think twice about going full speed. Not being active, not doing things with the people I love and staying in bed for the fear of wearing myself out is just not an acceptable option. I would much rather rest for longer than usual the following day because I had so much fun than lie around as a precautionary measure.
In other cancer news…
My last CT scans showed stable disease, meaning my tumors were no worse and no better. Stable is OK in my world because it means a) I don’t have any new tumors; and b) existing tumors are not aggressively growing. Stable is definitely preferable to progression (i.e. more tumors in existing location or new location(s), larger existing tumors, etc.) but not as great as regression (i.e the opposite of progression). I’ll take stable any day and given that these last scans came after only 2 treatments, I have my fingers (and toes) crossed for regression on the next round. I do get a bit stressed out around scans with everyone asking for the results so will not be sharing exact scan dates going forward. I hope everyone can understand and I will share updates here as often as I can.
I blogged before about my painful experience with Hand-Foot Syndrome following my 2nd chemo treatment. To try and get ahead of this particularly nasty side effect, we upped my dosage of Decadron (a steroid) on the days before and after chemo. So far, it seems to be working out. My feet are still peeling from the first Hand-Foot episode but they’re no longer painful. I did get some burn-looking marks on my hands after the 3rd chemo but they were fairly pain-free and did not affect my every day tasks. The unfortunate – or fortunate? – side effect of Decadron is that I have insane bouts of energy that leave me waking up super early and obsessively cleaning the house, or organizing, or blogging, or maybe doing a bit of all three.
With the 4th chemo, I decided to up my Hand-Foot prevention methods with the addition of hypothermia slippers and mitts (those are my freezing cold mitts on the left). I’ve also heard that cooling your hands and feet during chemo can help prevent peripheral neuropathy (a possible side effect of chemo that is usually permanent) so I figured I’d give it a try. The use of hypothermia to prevent either side effect is not FDA approved but the idea is that cold can constrict blood vessels and reduce the flow of chemo to the cooled areas, thus also reducing or eliminating side effects. My rule of thumb with these word-of-mouth type methods is that I’ll consider them as long as my doctor agrees they would not be harmful, plus there are currently trials underway looking at using cold to prevent another chemo side effect–hair loss. The negative aspect of something not being FDA approved is that none of the materials I need to cool my hands and feet can be provided by my cancer center. I actually inherited a lot of the materials I needed from a previous patient but everything has to be schlepped home and then back to the center for every treatment. Thus, this past Friday, Hooman and I could be seen transporting a large cooler with 30 lbs of dry ice, 2 pairs of mitts and 2 pairs of slippers (weighing about 4 lbs each), cryogenic gloves for handling the dry ice, an infrared thermometer, and a variety of other accessories. But hey, if it keeps the various hand and foot issues at bay, we’ll drag around blocks of dry ice with us any day!
And on to some fun stuff…
I’ve now been on my new and much healthier diet for about 4 months and am still going strong. I don’t drive myself crazy (I do realize that almost everything cooked in a restaurant likely has butter) and I do cheat once in a while, but for the most part I stick to no animal protein, no dairy, no alcohol, no added sugar (I do eat fruit) and limited white stuff (bread, pasta, etc.).
In the process, Hooman and I have been exploring some new restaurants in Cleveland as well as finding healthy options at our usual spots. Here are a few of our favorite places and dishes:
- EDWINS Leadership & Restaurant Institute (Shaker Square) – try Truffled Cauliflower Gratin and Portobello Napoleon
- TownHall (Ohio City) – try Vegan Chili (my absolute favorite) and Basil Fried Rice with Vegan Chicken
- Pura Vida (Downtown) – try Crispy Mushrooms and Veggie Big Mac (skip the sauce and swap for vegan cheese for a vegan-friendly option)
- Tommy’s Restaurant (Coventry) – with dozens of falafel and veggie burger options, you can’t go wrong
- Anatolia Cafe (Lee Road) – there are a variety of great options under cold appetizers; for an entree, I love the Shepherd Salad with a few falafels
Till next time…