Dear friends,
I’ve been meaning to sit down and write you an update for, well, nearly a month now. Every time I try to make the time, I find a deep weariness settled into my muscles that has made it hard to open the laptop. I often curl up on the couch instead.
This isn’t just the fatigue of a cancer patient, the chemo slowly toxifying my body to kill the bad stuff but also killing some of the good stuff while it’s at it. I mean, it is also definitely that. Last night, after a couple days of minimal side effects, I was hit with a wave of nausea that had me reaching for the Zofran and bubbly water while curled up on that couch. The days are unpredictable and that is hard.
But even beyond the physical fatigue, there’s just a deep weariness in me these last couple of weeks. I think it is because I feel like I am working many full time jobs. There’s my, well, actual full time job, the one that provides a paycheck and the health insurance I so desperately need these days. There’s being a mom to dear Rosemary, my favorite full time job, and wife, and all of the tasks of running a household (shared fairly equally in our house, but still they add up!). And then there’s the cancer patient job - chemo schedule and do my prescriptions need refilling and should I take this moment between things to rest? Or do one of the other myriad tasks filling my to do lists? There’s juggling a child care schedule to cover working hours and fitting in both chores and fun and relaxation (ha!) on the weekends. Water the plants, feed the dog, does the car need gas, and wait are we out of milk?
I know many of us are juggling many things. I think I’m sharing this not to complain or even set myself apart. I just need to acknowledge it out loud. I keep thinking the weariness will pass when I can take “cancer” off the list of things filling my calendar and thoughts. It will certainly help, but I wonder if it will be the cure. I’m not so sure.
Cancer Updates
I shared my news about my remission status about a month ago. I’m still soaking that in! Feeling oh so grateful that the treatments have worked as hoped.
After my PET scan, I entered the clinical trial portion of my treatment plan. I was randomized between two arms and two treatment options. Both include drugs that are fully FDA approved, they just haven’t been used in my setting - initial diagnosis - yet, but are typically used for patients who relapse. The goal of this study is to see if they can increase or maintain the cure rate (which, remember, is quite high! About 85% or even a little better depending on your factors) while improving quality of life.
One of the arms would have included 2 more cycles of the same exact chemo treatment I had been on - ABVD - followed by 3 cycles of an immunotherapy drug that helps my own body’s immune system do the cancer fighting. This arm would have been a bit longer but was a sort of “devil that I know” option, since I had already received 2 cycles of ABVD.
The other arm of the trial is the one I was randomized two. This arm only includes two drugs. One is a targeted chemotherapy that uses monoclonal antibodies to deliver a chemo drug directly to cancer cells, in my case those marked by CD30. My doctor keeps saying this is “not really a chemo” treatment, but what I think he means by that is they are not just dumping toxic stuff right into my veins. The toxic stuff gets delivered on a silver platter directly to the bad cancer cells. At the same time, I also get the immunotherapy drug that puts my immune system on overdrive to attack cancer cells.
Also, remember, since I’m in remission, this treatment is designed to keep the cancer from growing back. We want this bugger good and dead!
Overall, I would say my quality of life is improved from my ABVD chemo days! With my first cycle of this treatment, I felt a little tired, but not nearly the same level of fatigue as before. I spiked a bit of a fever two days after the infusion which caused some worry initially, but then my doctor realized it was just my immune system revving up as directed. The fever was more akin to what you might get after a vaccine (proving your body’s immune response) and not from an infectious cause. We watched it closely, but I didn’t develop any other symptoms and within 12 hours it was much lower and 24 hours and it was gone.
That was cycle one.
This past week I had cycle two.
The cycles on this protocol are three weeks apart, and I’m receiving three cycles. I arrived at that appointment not quite excited, but with the quiet thrill that comes with starting to see the light at the end of the tunnel. I just had to get through that day, and then I only had one treatment still looming!
About 20 minutes into receiving the targeted chemo, I started to feel very strange. I was very warm and starting to get very nauseous. Wesley had stepped out for a moment, and when he came back in he said “Wow, you are really flushed!” That’s when I knew something wasn’t quite right. I had him get a nurse.
Turns out I was having an infusion reaction. Ugh. The first nurse who came in turned off the IV pump and said, “OK, I’m going to go get a doctor. Don’t get scared, a lot of people are going to start coming into your room.” She was not wrong! In moments I had I think 6 nurses, a doctor (a second poked her head in but left when she saw my doctor was there), and the pharmacist. I started vomiting while they tried to quickly decide which rescue medicines to give me. The pushed some Zofran, started some fluids, and gave me a steroid. Nurses kept asking if I was breathing OK, or felt itchy at all. Praise the Lord, neither of those things occurred. Within a relatively short period of time, I was feeling much better.
Once I stabilized, they decided to give me my immunotherapy drug. That one takes about an hour to infuse, but I didn’t have any further problems. By the time I was finished with that, I was feeling fine, and had even eaten some lunch. They sent me home.
Overall the experience was unpleasant and mildly frightening, but I got through it OK. The question that remains, however, is what will we do for my last treatment. My hopefully last treatment.
Since I’m part of a clinical trial, my doctor has to talk to the people overseeing the trial to determine what happens next. He’s going to call me with an update when he knows more. He really didn’t give me many clues as to what the options could be before I left the hospital, but in my head I’m imagining three:
They give me the same two drugs from this trial protocol, but with more pre-medication to avoid a reaction. This feels very scary.
They don’t give me the targeted chemo drug but they do give me one more round of the immunotherapy. This feels safer, except then I worry is it enough to make sure my cancer stays in remission?
They go back to the ABVD protocol for a cycle or two with the immunotherapy drug (the other arm of the trial I didn’t get assigned to). This also feels safer, but then I worry I have more than one treatment left to go. I was so close!
Some other combo or option that I am not thinking of because CLEARLY I’m not the doctors, ha!
Again, he didn’t list these out to me, this is just the ideas I’ve come up with on the nights I can’t sleep (like last night, despite the weariness).
So now we wait! I hope I’ll learn a bit more about the plan this coming week so it’s not nagging at my anxiety. But we’ll see what happens.
Thank you all for all of your prayers and support. The meals and the cards and the emails and texts just keep coming, and I cannot tell you how incredibly much they mean to me and my family. From the bottom of our hearts, thank you.
And hey. If you’re juggling ALL OF THE THINGS and feel like you’re doing it pretty well, I would love your tips and tricks! :)
As always, a well-written story. You have a talent for this!! I am always juggling a lot - but most grateful for my health - so I cannot fathom my plate being this full PLUS what you’re going through. What I do know is that you are receiving excellent medical care and that God is watching over you. Have faith. This too shall pass. 💗💪