In the spirit of contuing to avoid, I wrote this last Wednesday. It all still pertains to the truth.
I keep putting off posting an update because I want to post that now that chemo is over all is well. While I am thrilled to be no evidence of disease, I’m struggling with what this immediate post-chemo phase is.
When I think back to infusion and pump days, my stomach and body go into knots. I didn’t fully realize how bad I felt on those days. That grin and bear it attitude didn’t allow for much dwelling on that part.
The main complaints that I had during treatment continue to be struggles. My taste is still not back enough to enjoy food. It’s back enough to eat food and to not immediately feel disgusted by the taste. My tongue still looks weird. A smooth tongue it is not. My neuropathy is frustratingly disabling. I can’t open packages or containers bc my fingers are always buzzing and numb. I can’t put on jewelry bc you need to be able to have the dexterity and feeling to open and close clasps or to put earrings in. I slept in a necklace the other night, but woke up feeling like I was being strangled. I wasn’t. My necklace was far from doing so. A simple fix would have been to just take the necklace off, but I couldn’t. So I did a lot of deep breathing, held onto the necklace and eventually fell back asleep. But there is something scary about feeling anxious, knowing what would fix it, but not being able to do that thing without help. Also, I can’t walk very far because ny legs give out from trying to navigate walking when you can barely feel your feet and legs. I haven’t driven yet because I don’t fully trust my post-chemo body yet. The idea of driving when I can barely feel my hands and feet seems like a bad idea. It’s definitely going to take baby steps. Finally the fatigue. I don’t have full on crash days, unless I expend a lot of energy in a highly stimulating environment: see Hamilton and Disneyland. However, I haven’t made it through a day without a nap. I get to the point where I can’t keep my eyes open. On the flip side, I have trouble falling asleep at night because that seems to be the time when my neuropathy likes to tingle and burn the most.
So while I’m not getting biweekly infusions of chemotherapy anymore, post-chemo recovery is a thing. Those drugs zapped the cancers, and they did a number on my body. My recent blood test still have me severely immunocompromised and my platelets are quite low. I have bruises all over my legs, some in the shape of paw prints. A pug using your legs as a springboard from which to jump does not go well with low platelets and blood thinners. In addition to paw prints, I just get seemingly random bruises from a slight bump into a chair, bed, wall, or other fixed features. Why am I bumping into these things? See neuropathy. But also just general clumsiness. Speaking of clumsiness…for you moms out there who were pregnant, remember the dropsies? When things seemed to just randomly fall out of your hands? Yeah, that’s definitely happening. It’s a good thing I have a good case on my phone!
As hard as this phase is physically and mentally, don’t get me wrong. I have ventured out into the world a few times, and I have had the energy to interact more with the kids. Our family trip to the Pantages to see Hamilton and afterwards to stage door to get signatures was amazing. I had my moments of losing balance and not enjoying dinner, but putting those aside it was a special time for us.
We had also planned a Disneyland visit on 9/12 when my chemotherapy was supposed to end in July, I decided to keep the reservation, and we went. However I had learned from our Hamilton excursion that I needed to put some things in place to enjoy our time. I got a hotel room so I could go and take a nap while the rest of our crew stayed in the park, and I also rented a mobility scooter. That was definitely a hard step psychologically to accept that I needed that aid, but I also knew that it wasn’t an option if I wanted to be able to enjoy any of my time there with the family. We had a great time. We all “Disney bounded” upon Colette’s usual request. We did the original Disney crew: Mickey, Minnie, Donald, Daisy, Goofy, Clarabell, and Pete. I picked Pete bc what beats overalls for comfort? One of the highlights of the day for me was getting to meet Pete. He was flabbergasted to see how similar we looked together :)
it hasn’t been all bad, but I have struggled a lot with posting this update. I think there might be a hesitation to share this part of the journey bc once chemo is over, you want to put it all behind you. A part of your life nicely compartmentalized that began with diagnosis and ended with last treatment. I knew it wouldn’t be exactly that because of the thorough monitoring for the next 5 years, but this phase is a bit more than that. My hope is that I don’t have to deal with the after effects of chemo for very long, but I do know the memories and trauma of going through cancer treatment will always be a memory my body keeps. I’m just not at the point of celebrating that I got through it yet, because I don’t feel like I’m through it.
Thus I will continue to press onward.
P.S. Check my instagram or FB for photos of Disneyland and a video of my awesome encounter with Pete there.
