Breaking Point
The other day I reached a breaking point. For the last week I’d been dealing with open sores in my elbow creases and the backs of my knees. My oncologist prescribed me one thing, then I saw a dermatologist who prescribed me something totally different. I’d been adhering strictly to the regimen laid out for me, but things hadn’t gotten better only worse. It was to the point that I couldn’t bend my knees without significant pain and discomfort. It hurt to walk or bend my knee at all. Because of this, I was pretty much couch- or bed-bound except for getting up to use the bathroom. I couldn’t go for walks, I couldn’t exercise. I was just a useless lump.
Besides that, the rest of my skin was so dry and itchy that I couldn’t focus on anything else. It started in my scalp, then all of a sudden it was my left thigh, then my right arm. Itching is one of the worst symptoms for me because it’s more than a physical symptom, it’s also a mind game. The more you scratch the more you itch and it turns into this horrible feedback loop that is all-consuming. I couldn’t use lotions or creams because they made my skin burn. Instead I slathered myself in Aquaphor and prescription ointments that left me so greasy and sticky that I was staining all my clothes, blankets, bedding, everything.
Just as I was feeling like things couldn’t get any worse, I spiked a fever. The chills and muscle aches along with an ickiness that not even Tylenol could take down left me so rundown, exhausted and frustrated. On top of that I was scared to death that I had contracted COVID. Intense fear, exhaustion, and malaise swirled around me and came together like a pot boiling over.
It was all too much. I sent frantic emails to every single person on my care team. I left panicked voicemails at basically any cancer-related number I could find. It felt like this symptom trifecta and the subsequent feeling of panic and doom was going to take me down.
I remember standing at the bathroom vanity trying to sort through a mountain of tubes and tubs of ointments and creams, as well as a full-on pharmacy’s worth of prescription drugs botttles. I looked at myself in the mirror and the next thing I knew I was a sobbing mess on the floor. It wasn’t just cries catching in my throat or a stream of tears, but wails that reverberated through my whole body. When David found me I was a crumpled mess. I was allowing myself to feel all of the emotions I bottled up from the past year and especially the past few months. I felt like a lump of wasted medical resources and futile treatment efforts. I didn’t contribute a single thing to society and instead I was sucking the life out of people who cared about me.
That was the lowest I have ever felt in my life. Crawling out of that black hole seemed impossible and I cried myself to sleep that night while David held me and rubbed my back. I am not here to say that everything is amazing now because I focused on joy and repeated some mantra about the power of positive thinking. A lot of things are still extremely shitty, and I know I’m not the only person that feels this way.
Over the next few days I was able to come up with a plan with my doctors that has helped my symptoms improve. I tested negative for COVID which was a huge relief. I was able to make it to my next clinical trial treatment. I’ve been reminding myself that the treatment is working and the cancer is shrinking. I also am genuinely hopeful for this year. I received the first dose of the vaccine and I can truly see some light at the end of the tunnel. I know this has been one of the worst years for a lot of people, not just me, and I’m taking comfort in being able to share in the shitty parts but also appreciate some of the little things.
We are so fortunate to be enrolled in this study even though it sucks that it requires traveling every three weeks. David and Kodi are always there for me and are both great snugglers. I may have reached a low point but I’ll still be here fighting.
