PROGRESS: Day 6.7

Well it’s been a crazy last couple of days, which has made it hard to post. From a physical perspective, I’ve still been doing fine since my last treatment. My skin on my whole body is getting dryer and I’m getting more exhausted from a combination of getting less restful sleep and not being able to sleep as well. The hot flashes suck – a lot. I remember at the beginning my Aunt said that she wished she could wear all of my cold stuff for hot flashes, and, to be honest, I think the cold stuff might actually feel really good during the hot flashes!

So what craziness have I been experiencing? Well, on Friday we were down at our River House and I wake up in what feels like the middle of the night to Sean turning lights on and doing something. I’m so tired, I just don’t care, but I am annoyed. At some point after he’s done rooting around, I open my eyes to see him standing with a mask on. He proceeds to tell me that he has a low-grade fever, he’s taken two COVID tests (which were both negative) and that he’s going to sleep away from me with a mask on over by the sliding glass door!

The next morning we decide that we are going to leave Sean at the River House and the rest of us are going to go back to Baltimore. Sean got to keep Ginny for company. Sean was still feeling crappy and his fever kept coming back. My in-laws left on Saturday night, so it was just me and Maddie. She kept telling me “It’s just you and me!” We ate her favorite, pasta, for dinner on Saturday and then on Sunday morning we made pancakes and eggs for breakfast. We FaceTimed Sean and he showed me something on the table at the River House asking me if it was roach, rat or mouse poop.

“No, that’s too big to be any of those. It looks like bird poop. But I feel like you’d notice a bird flying around the house…” was my response.

Maddie and I went to the playground twice on Sunday. We first went to see if the neighborhood playground was finally done, which it was not, so we went to the “Choo Choo” playground. At that playground there were two little girls who were sisters playing. The youngest came over and stood way too close to me and asked Maddie’s name. Maddie introduced herself and then the girls played together for awhile. Maddie kept running around the playground yelling “I’m Moana!” She has probably watched Moana or some portion of the movie at least once a day for the last week. We even found a rock that we painted green to be like the “Heart of Te Fiti.”

In the afternoon, we went on a walk to check on the neighborhood playground, but this time, there were a ton of people there. Someone had broken one of the gates, so people were just wondering onto the playground. Of course, we did as well. This playground has been closed since early spring 2021 and it was supposed to open Spring of 2022. It is still not open! They are putting the finishing touches, but all of the playground equipment is set up at this point. We can only be so patient!

Sean also took another test on Sunday, but like the rest, these weren’t obviously positive. He used those tests where you let the strip sit in the fluid and it just climbs up the strip. Those seemed to be harder to read. He said it he put it in the bright sun and tilted it a certain way, it might look faintly positive. Then I was afraid that maybe Maddie and I would end up getting sick, which I really don’t want to happen because it will delay my treatment at least one week.

On Monday morning, Sean was worried after another negative test that he doesn’t have COVID, but has something else. He had really horrible muscle pain and his fingers even hurt. He hadn’t had a fever again, even without Tylenol. I told him to try and get a PCR test at the grocery store in walking distance from the house. If the PCR was negative, then it seems hard to believe that he has COVID. But then he also told me that he woke up in the middle of the night to scratching. He thought a critter was in the attic space, but it turns out there was a bat flying around the house!

In the middle of the night, he goes to sleep in Maddie’s room because he can close the door tightly and there are no access points for the bat to get in. Ginny was probably wondering what he was doing and why he was disturbing her sleep. But now the poop made sense! So now while Sean is experiencing all of this soreness and might-or-might-not have COVID he has to call a “Bat Man” to come and try to find this bat! The “Bat Man” came, couldn’t find the bat, but did tell us all of the places that a bat could get in and how he could fix it for us. All of this is happening while I’m taking care of Maddie alone, worried about Sean, trying to get the house cleaned up for the cleaning ladies and really exhausted generally from chemo. Fortunately, since Maddie and I were both symptom-free and testing negative, she could at least go to school to give me a bit of a rest during the day.

Tuesday rolls around and Sean still tests negative on the antigen test and goes to get a PCR test at the grocery store. That, too, is negative. Now we are thinking he maybe didn’t have COVID at all. Obviously, there are other things (a lot of other things) other than COVID that are going around out there. My mom made a good point that COVID has somewhat pulled back on the curtain how many other things out there that we might all just generally attribute to the “flu.” Many of those things probably are not the flu and some other virus, but it wasn’t until COVID that it makes you start to wonder about all that stuff going around. Now he’s feeling 100% better, but we will probably just leave him down at the other house this week to be sure. It’s not like COVID is special, I need to try getting sick with anything that makes me too sick. I don’t want to get whatever he had.

But it’s the night before my seventh treatment and I’m really ready for all of this to be done. It was great to get to the halfway point, but the halfway point almost feels as far away as the beginning did. This week was particularly stressful, because it demonstrated how critical the support is we get from our families. With Sean potentially taken out of a care-giving capacity, it left me as the sole caregiver of Maddie. I’m fortunate that the physical toll of my treatment hasn’t been too bad, because I couldn’t imagine if I was really out of sorts. It would be untenable. I’m so grateful for our family and everything they’ve done to help us. My mom arrived today, which is a big relief to have someone else here. Hopefully Sean will be able to rejoin us this weekend as long as he keeps testing negative. And hopefully my treatment tomorrow will go smoothly. Fingers crossed for good blood tests!