Déjà Vu
So a couple of weeks has turned into a couple of months since our last update. I think that's a testament to the feeling of constant exhaustion and burnout we're feeling - and that I know lots of you probably are too, as the COVID roller coaster continues.
Ryan started Delayed Intensification on Friday, July 2. This phase has been pretty similar to the one he went through back in the winter, so not fun. In mid-July I was traveling to Savannah and Hilton Head for a family wedding and vacation, so Ryan's mom came down to be with him for a week. Unfortunately, the night after she got here, Ryan had to be taken to the ER at Riley because he spiked a fever. After some chest X-rays they determined that he had the beginning signs of pneumonia. Luckily they were able to put him on some antibiotics and send him home late that night, and the antibiotics ultimately helped clear things up. It's pretty anxiety-inducing to leave him when things can go south so quickly, so I'm grateful that his mom was here to take care of him while I spent time with family.
This phase brought back the dreaded steroids, which came with quite a bit of bone pain for Ryan, so the heating pad was his friend. In the middle of the phase he got delayed for a couple weeks due to low counts, but he started the second half of the phase on August 16. The past couple of weeks he's had a lot of nausea (thanks to the at-home chemo shots I have to give him) and has been getting more fatigued again, but to his credit he has kept up an impressive level of activity, even going through about 5 hours of job interviews in the last week and driving himself to physical therapy. He has needed a few blood and platelet transfusions, which brings me to my first request of you all: please donate blood if you are able. There has been a national blood shortage this summer, which has very real affects for people like Ryan (e.g. when he goes into the clinic they're more picky about who they give it to), so every donation truly counts.
My second request is that you get the COVID-19 vaccination if you haven't already. The FDA recently approved a third COVID vaccine dose for certain groups of immunocompromised people, so thankfully Ryan will be able to get that in a few weeks once he finishes this phase and his counts go up a little bit. That gives us a little reassurance, but it's still not guaranteed to give him the same protection that it gives the rest of us. So, if you're not vaccinated already, I am actually begging you to please do so as soon as possible. I can't begin to describe how terrifying and infuriating it is to see that hospitals are having to turn away cancer patients because their beds are full of people who have CHOSEN to remain unvaccinated against the advice of healthcare professionals and are now taking up medical resources once they get extremely sick. Even people who are vaccinated aren't guaranteed not to get it, but your chances of getting it, spreading it, and taking up valuable hospital space are WAY lower if you have the shot. It's the only way we're going to get this virus under control, and immunocompromised people like Ryan are counting on other people to be responsible. Here are a few resources if you want to know more:
In all honesty, sometimes I feel like I'm living a double life these days, or just floating in a weird state of limbo. My company has gone back to the office a couple of days a week, and although I've enjoyed seeing my team in person and getting out of the house a little bit, it has made it more difficult for me to get Ryan to his appointments and to be around if he needs anything. (Luckily, my office is only 5 minutes from both the hospital and our apartment, for which I am very grateful.) As an event manager, I was very excited about the return of in-person events, but it seems like we only had about a month or two of feeling safe before everything started going downhill again due to the Delta variant. Ryan told me the other day that he is exhausted by all of the mental calculations we have to do on a daily basis to determine if any given activity is safe for him. Will people be vaccinated? Is it outside? If it's inside, will people be masked? Will they be taking masks off to eat and drink? How effective was his vaccine? Are his counts high enough that if he did get sick he would have a chance at fighting it? How far can we travel without it being an issue if we had to rush back? Are there open beds at the hospital if it came to that? These are just a few of the questions we ask ourselves on a daily basis. Not to mention that every time I get a slight sniffle, I have to resist falling into a total anxiety spiral that I'm going to get him sick (and for someone with seasonal allergies, this is a daily thing).
A few weeks ago, my family came to visit us, and we both agreed it was one of the best weekends we've had all year. We spent lots of time outside in the sunshine, we attended an outdoor concert, we ate good food, and all around it felt ~normal~. But right after they left, Ryan shaved his head because his hair was falling out again after finally growing back. Between that and everything else it all feels a little like deja vu. It's safe to say we're both ready for this all to be over with and move the heck on with our lives.
Looking ahead, there are two more weeks of chemo in this phase, and then after a week-long break in between he'll enter Interim Maintenance II (check out one of our previous blog posts for a refresher on what the different phases entail). That will last about 6 weeks (maybe a little more), and then if all goes as planned, he will FINALLY enter Maintenance almost exactly at his one year anniversary of being diagnosed. We can see the light at the end of the tunnel but we're not quite there yet, so please send us all the positive energy that you can for the next couple of months. As always, if you want to know other ways to help, check out our FAQ page. Thanks for reading and keeping us in your thoughts - sending love to you all!
