Caring Bridge - January 2020
Caring Bridge Journal Entry by Darby— January 31, 2020
Hard Week. It was a long week.
As we have said good days and bad days. Last weekend was amazing, good energy, good appetite, good appointment with Dr. G that showed health improvements. This week though hasn’t been as good. It was a busy week too many appointments, too many issues with getting medications, too many phone calls, too much that drained Michael’s energy and appetite. Just too much for both of us.
Our world revolves around cancer. I know the world has had to some major things going on, but those can’t be a priority for us. I haven’t read or watched anything on the impeachment trials. If you know Michael and I even a little bit, you know how we are passionate about the world around us so we usually pay attention to political issues. But that isn’t the case right now.
A typical day is exhausting in all ways. I knew conceptually from watching friends and family go through cancer. Now actually going through it, it is harder than I ever realized.
Monday - We were at the oncology center to talk to the therapist about advanced directives, living wills, medical power of attorney, grants to help with bills as Michael can’t be working much, and all that “fun” stuff. It was necessary, but exhausting.
Tuesday - I had a little me time in the morning as I had coffee with a friend. On the way there I was on the phone trying to find out if a prescription I dropped off on Friday was in yet. It had already been delayed once. They put me on hold and then accidentally hung up on me so I texted Michael asking him to call. He texted to call him after my coffee. Of course it was a huge mess. I talked to one of the nurses on Michael’s team so many times on Tuesday just for one medication. It felt like I was on the phone all day.
The staff at the oncology center was amazing in helping me deal with the medication issues though. They are a blessing to me. They know all this “cancer stuff” is stressful enough to deal with, without adding in these kind of complications, so they always go above and beyond.
All the while doing this I had an appointment, grocery shopping, just every day chores, meals, helping Michael stay up on meds his daily care.
Wednesday - When my feet touched the floor from bed, I immediately start planning for the day. Michael’s energy and pain levels vary everyday so those are the first questions, how is your pain, your energy, general feelings/issues. This is our normal for everyday. Wednesday the labs were at 9:15 so it was an early morning because we have to buffer in time for Michael to regain energy after using it. So for instant some days a shower isn’t possible as he doesn’t have the energy or time to regain energy from it. Getting ready to go anywhere is a process that takes planning and time. I know this is what Mom’s go through with little ones. Not that Michael is a little one, but just needs extra time and help.
The labs took a little more time as it hadn’t made it to his chart yet that he has the port so the lab tech had to change her setup when we got there. I had 2 of the nurses from the team come to talk to me about the medication issues while Michael had blood taken. Which was so much easier with the port. We had to wait for a little bit for Dr. G to sign off on the work around that the nurses came up with for the prescription issue. By the time we got home it was lunchtime. After lunch, I had to go to 2 different pharmacies for 3 different prescriptions. Hopefully next time we need to fill the one we now know what the issue is and can plan in advance for the extra time it takes for them to get it. After all that running around, as the pharmacies aren’t close to each other, I stopped to pick up meals. A friend offered to make freezer meals so I picked them up from her. A big sack full of meals in disposable freezer pans with directions on them. So awesome!
I brought those home and Michael wasn’t feeling well so we tried to assess what was going on and how to help the upset stomach. Wednesday evenings I have a women’s group I am a part of so after getting Michael as comfortable as we could, I went to that. When I came home though, we had a scare as his temp spiked up to 102.6. So we were taking temp every 15 minutes to make sure it went down instead holding or spiking up. If it stays that way longer than 20 mins, we are suppose to go to the er. It hasn’t spiked like that in a while which worries me and caused me to stay awake most of the night. It went down and eventually was 99.2 the last time I took it so Michael could get some sleep.
Thursday - Infusion day. The day started hard due to the fever and stomach issues the night before. Which makes getting ready to go out a little harder. They were running behind at the oncology center so we had to wait a bit before Michael got a chair. We were there for 2 1/2 hours. We had lunch there that they provided for us. They really do go out of their way to make sure we have some help and convinces during this time that has so many issues. Again port made the infusion go so much easier. After we both came home and crashed. Exhausted. Naps for both of us. Wendy brought us dinner and I didn’t do anything, but read and rest.
Next week won’t be as busy, but I do already have a list of things I need to do. I see lots of paper work for next week so hopefully not as much running around.
This post is mostly me just laying it out so that it doesn’t exhaust my brain anymore. I know everyone wants to help. I am extremely grateful for all the help. I don’t always know the ways friends and family can help in busy times like this past week, but if I do have something, I will ask.
