Day 50 – Chemo Round 2 & Everything Else
As I sit here waiting for the washer to finish washing our clothes for chemo round three, I am thinking about the past two weeks. Thinking about chemo round two. Thinking about all the side effects Sean has experienced. Thinking about our heightened state of awareness from COVID-19. Thinking about the precious moments Sean and I have shared the last fourteen days. And thinking ahead to what is in store tomorrow. It’s interesting how I measure our life in two week chunks now.
Chemo Round 2:
Two weeks ago Sean began his second round of treatment. To say we were nervous about this round would be an understatement. I was just praying that Sean could make it through the last drug without any reactions. I was hoping that his reaction from round one was a chemo beginner thing and this round he would be better. Everything was going great but unfortunately, that last set of chemo drugs do not sit well with Sean’s system. His body gets saturated with chemo and it says enough is enough.
Sean’s reaction was stronger this time. He was sweating more, threw up more, and generally was not having a good time. But his chemo ninjas quickly took over. They flushed out his system and gave him some strong meds to help him relax.
I have had a lot of proud moments during this process but I was the most proud of Sean today. When all the symptoms were under control, Sean, through very drowsy eyes, asked the nurse to start the chemo drip again (I think his exact words were “hook me up nurse. Let’s finish this thing.”) I could not believe he wanted to finish the treatment. My eyes immediately started leaking and the nurse teared up a bit as well. Here was this man who just spent the last 25 minutes heaving and sweating saying he wanted to finish the drugs that caused him to have all those negative reactions. He was so weak when he said those words but in my eyes, I have never seen him stronger.
The rest of the three days in Jacksonville were okay. Sean had some bad side effects in the hotel that he didn’t have on round one (he had them at home after but not in Jacksonville). Nausea. Vomiting. Exhaustion. All the things you would expect from chemo. We did have some great news from Sean’s blood work. We found out that Sean’s cancer markers dropped almost 50%. That was a great mood enhancer and a much needed boost to our pysche.
Side Effects: (I know most of these are common side effects. Not trying to say Sean is unique. Just pointing out what happens during chemo so that you have an idea of what life is like so far. I’m sure more side effects will be added in the future too.)
Since I have been talking about some of the side effects, I wanted to talk about those and a few others that Sean has been experiencing these past weeks.
Pain Management – We have managed to get Sean’s pain management a bit more under control. There are days where the pain meds do not help much at all but there are days when the meds are wonderful. We like to think of the pain as the cancer cells dying so the pain is worth it in our eyes. Our friend Emma said it the best way I could ever put it. She said when you workout, you have pain so it makes sense that you would have pain during this. That is exactly how we feel.
Smell Sensitivity – Another side effect Sean has been experiencing is sensitivity to smells. One of the biggest smells that will send Sean running for the bathroom is garlic (We found this out the hard way in the hotel when someone next door ordered a large Italian meal). This has been the hardest for me because I was eating Freshly meals. Almost all freshly meals have a ton of garlic in them. Makes them taste wonderful but unfortunately, those had to go with Sean’s aversion. This also may be TMI but another smell that gets Sean vomiting are bowel movements. Not trying to be gross. Everyone poops. It’s a thing we all do but I can’t imagine needing to do my business and then have to stand up, turn around and throw up as well. Ugh.
Our Smell Solution – we received a bunch of cloth masks which are so wonderful and the PERFECT smell aversion solution for us. I place a drop of botanical oil on it and Sean wears that whenever he is feeling nauseous. We have a mask on the door handle of each bathroom too. The smell is calming and the mask actually helps Sean control his breathing. At the hotel in Jacksonville, I have an oil diffuser going the entire time with botanical smells just in case someone wants to bring back the entire restaurant of Olive Garden.
Cold Sensitivity – just call Sean Mr. Freeze because every cold thing he touches, his skin basically gets like a freezer burn feeling. He can’t get anything out of the fridge without gloves. He can’t drink anything cold because that hurts. He can’t sit on the toilet seat (Sean hasn’t been having the best luck in the bathroom). And the weirdest cold issue has been with burps. Sean is not a burper but the treatments have made that more common. He says it feels like he is burping ice cubes.
Our Cold Solution – we have gloves by the fridge for anything he may need in there. We have been limiting sodas and “burpy” foods. And for the toilet, we bought the softest, fuzziest toilet covers. These are washable cloth seat covers. I bring one to Jacksonville with us as well (and let me tell you, these fuzzy seats are not just nice for Sean 😉)
So these are the things we have been dealing with so far. I wanted to document what was happening so we can look back and go, oh yeah, remember that time.
Sitting here in day blah blah of isolation due to COVID (I really have no idea how long this has been going on now) I realized that this virus has been tough for us. Tough on many levels. There is the constant state of fear when we leave the house. It is scary for everyone but add on the scariness of Sean’s compromised immune system and my spidey senses are on top alert. This terrifies me but getting sick is not the scariest part of COVID. Nope, the scariest thing for me is Sean needing to stop treatments if he gets sick. We have been doing our best with ordering from Amazon as much as we can but Amazon has run out of a lot of food that we need so I don’t have a choice but to go into Publix. Sean doesn’t go with me but it doesn’t matter, because I could bring something home as well. Sometimes I wish we had one of those clean things that you see in movies set up in our garage. Just step in there, get blasted by some cleaner and then I am good to enter the house. For now, I basically strip in the garage and beeline it for the shower and wash every part of my body. It’s probably overkill but I would walk through the neighborhood naked if it meant I could guarantee Sean would never get sick.
Besides going out in public, the other thing that has just sucked about COVID is not having human interaction. I didn’t know how important it was until we weren’t allowed to have it. We had friends coming over almost daily to the house and it was absolutely the most wonderful thing ever. Playing games. Chatting. Laughing. Having friends over at the house made things less terrible. It was a moment in the day when everything felt normal. Now our visits have turned into phone calls. We LOVE the calls and we love chatting but it’s just not the same. I know most people are feeling the same thing we are. This isolation stuff is not fun for any of us. Sending big hugs from us to you during this terrible time. I can’t wait until the day we are free to hug and hug and hug. That’s the one thing I can’t wait to do again.
Despite all of the stuff I just wrote about, our life isn’t all terrible. There are moments where things are just perfect. That may sound weird to say but I feel like Sean and I feel like life is more precious than ever before and because of that, we find these little moments that are…well…perfect.
Sean laying on my side, with cats filling in all the empty spaces. A late night hot tub soak watching for shooting stars. Working on our YouTube channel and hysterically laughing about something that we said while we were traveling. Sneezing at the back of the house and hearing a “Bless You” from across the house. A midnight shoulder massage because I have a terrible migraine. No matter what is going on inside Sean’s body or outside our front door, we will always have these precious moments that make life worth living.
So here it is, time to head back to Jacksonville for round three of chemotherapy. I still can’t believe Sean is already on his third round of treatment. It’s only day 50. That may sound like a lot in days but that’s only 7 weeks. So many stars had to align for us to be in this position on day 50. Sean having heart attack feelings to get him to go to a hospital. Our friend Lori making an angelic phone call to her husband’s cancer team to get us an appointment sooner than we were scheduled. GoFundMe donations allowing us to put the massive down payment needed to start treatment at Mayo. The amazing team at Mayo coming together to give Sean the best treatment possible. And of course topping it all off, our friends, far and wide, that continue to support us as we fight this battle. Things really can change so quickly.