Changing it up a little
This post is a bit overdue, as I had an incredibly rough end of the week last week. My mental clarity and honest ability to do pretty much anything aside from lying on the couch was in jeopardy, and while I wanted to write an update I just couldn’t get it done.
Here we are, nearing the end of my off week, and I am feeling pretty good again. Backing up, I will fill you in on the course of events from last week. I write this in an effort to give you a laugh and give you hope that no matter how bad things seem, you are not alone. :)
On Monday, May 23rd, I had my second round of infusions, and if you recall I had the unique privilege of spending 8 hours in the clinic for this one. Everything went well, and thankfully I did not experience the reactions I had the first time, however, I ended up having a slew of side effects throughout the course of the week following. On that day Makaiya had a movie with her teacher after school that we purchased during a silent auction earlier in the year. Well, I thought that was the case… UNTIL, I received a phone call that Makaiya was waiting in the office at 3:30 for someone to pick her up because the movie night was actually the next day!!! AGH! Darek had just gotten home with Toby and Carina, and had to turn around and go back to school to pick her up. Then, she had her first softball game that same night to get ready for between my coming home and everyone eating dinner. I felt bad that Darek couldn’t get all of his work finished as he usually tries to do after school pickup.
Tuesday was the (the real event) movie night for Makaiya after school, which she stayed for but had to opt to miss her final dance rehearsal in order to make it happen. Of course, I thought this was all going to work out when the movie was on Monday. Ugh! Oh, and I don’t want to fail to mention the biggest hiccup in the week - Carina called me at 11:30 AM from school because she was in the nurses office with a fever. She was alerting me that I would soon receive a call to pick her up, which I did a few minutes later. In the meantime I texted Darek, who was working from home (downstairs in his “bunker”) to let him know that Carina was going to need to be picked up. What I failed to mention was that she was ready to go. SO… 45 minutes later I made my way downstairs to see if he had gone to get her yet. Nope. He was just working away, waiting for me to let him know she was ready. UGH! FAIL! Let’s remember, my brain was not fully functioning… Darek left immediately and brought Carina home - with COVID. Then, he had the unique privilege of returning to school to pick up Toby after school.
I had to laugh, because if I didn’t I would cry!
Oh, and did I mention that I was having severe muscle cramping, so crying was extremely painful for my eyes. In addition to this, eating was also painful as my jaw would cramp with every new food I ate. It was so strange, and really frustrating, but thankfully that has subsided.
Toby had a baseball game that night, so I took it upon myself to pick up Makaiya. I was not feeling great, but figured I could handle this small task, only to arrive and have two teachers sitting outside the school with Makaiya because I was late to pick her up. Sheesh - I was really winning!!
Wednesday started out okay, but I was really not feeling great and couldn’t bring myself to eat very much. I was tired, but couldn’t sleep because of the steroids I was taking. I was a hot mess!! We did have an incredibly generous blessing that day. We were gifted a clean house, and that was fantastic! Carina was quarantined to her bedroom and I was wearing a mask around the house, which I’m sure contributed to my general discomfort. Oh, and the rest of us tested negative, so nothing to worry about there. Now, this was the day that Toby had his movie event after school. Darek picked Makaiya up from school, came back home to work for a while, and I (once again) drove to pick Toby up from his movie night. I called Toby to let him know I was there and he informed me that I was 30 minutes early. OOPS! I did it again! :-) On the bright side, I now had 30 minutes to rest in the car, as I probably should not have been driving in the first place. My reaction times were slow and I was struggling to drive the speed limit. Thank God that He has placed a hedge of protection around us!
By Thursday I was done trying to keep track of our schedule. I made so many mistakes throughout the week! I must say I am thankful for grace. Darek, and my entire family has given me such grace through my many blunders. This was my absolute worst day of the week, and I was feeling bummed on top of it all because I missed so many of the kids’ sporting events, including the game Toby played that night. Thankfully Emily and Mike (Darek’s sister and brother-in-law) and their boys were able to watch the game and cheer Toby on. I watched the video stream (thank you to our team moms for this) from home!
Friday was an okay day, as I was able to drive to our final Bible Study / Book Club for the school year, in Chaska. I am grateful beyond words for those ladies! We have seen each other at our best and at our worst, and learned how to embrace challenges and love one another through it all. If you don’t have people like this in your life, I pray you find them. Life is too difficult to go it alone. That was the only thing I did on Friday, and it was plenty.
We had some wonderful meals delivered this week and once again are grateful for each generous family who cares for our family. Thank you!!
Saturday was a beautiful day! I was finally able to get out of the house and watch Toby and a group of other 10 year old Chanhassen Storm baseball boys scrimmage. It seemed like they all enjoyed working on their skills and having fun. We had a low key day, which was very healing both physically and emotionally. I was still dealing with some unpleasant side effects.
On Sunday I had the humbling honor of sharing a message at our church. This was a first for me, and I believe it went well. Clearly, I am not short on words, so instead of not having enough content to fill the space, I had a little too much. It was okay, though. (I think). I omitted a couple of stories, and stayed close to the time limit. :) If you would like to watch, here is a link to that service. —> Living Life on Purpose
On to this week… I’ll keep the rest of this brief. We had a lovely day on Memorial Day, attending the Chanhassen Memorial Day Ceremony at City Center Park. It was a great event, honoring the lives that were given for our freedom. The kids listened intently, and hopefully we each learned valuable lessons. We sang patriotic songs and honored the men and women who have served or are currently serving in our armed forces. Here is my special shout out to my nephew, Collin, serving as a United States Marine!! I am proud of you, buddy!
I met with Dr. L. on Monday afternoon and we discussed the many side effects I had been experiencing. She was absolutely fabulous, and once again I was reassured that God has placed me in her care because she is the very best fit for me. We came up with an adjusted plan, decreasing the Oxaliplatin dose, and adding a few new foods and supplements to my regimen. She is fully confident that I will feel much better after this next round (round 3) on June 6th. I am trusting her, and ultimately trusting God that this is still the best course for my cure.
Toby graduated from Elementary School (School of Grammar) and is now entering 6th grade (School of Logic). Carina completed 2nd grade and Makaiya finished 1st grade. Their final day of school was on Wednesday, June 1st, and we are thrilled that it is summer!
Let the Summer of Healing continue!
