Catching Up: Nov 2024

 

The cool fish tank at Jim's doctors office

Today, November 14, marks 2 months since Jim’s craniotomy. He has also completed his first round of chemotherapy. He did a five day course of Temador (Temozolomide) Nov 8-12 and he has yet to have any bad side effects. He took an anti-nausea medicine about 30 minutes before the chemo each time just in case. The pharmacist at the cancer center recommended taking the pills in the morning. We had originally read that lots of people do it at night, but also that the stomach should be empty. I read a research paper about a retrospective study on patients that took this same chemo for glioblastoma (a different but similar brain tumor) and compared those that took their medication in the morning vs at night. The morning chemotherapy takers lived longer. So that was enough to convince me. His appetite has remained good throughout the week and he just feels a little more fatigued.

He has continued to work with the speech therapist that did his swallow test. Jim meets with her twice a week and also does physical therapy at the same facility. Kelly has worked with him on swallowing and the last time we were there she did an in depth cognitive assessment (SCATBI). We got the results of the test today and he scored in the normal range. I also ran into Kelly at church, which was pretty neat. She has attended our church with her family for the past few years and I had just never met her.

On Tuesday Jim met with a nurse practitioner at a neurology practice. She had really done her research on Jim and seemed quite knowledgeable about his history and the medication he is taking to prevent seizures. She ordered some bloodwork to check the level of that medication in him, liver enzymes since it is metabolized through the liver, and blood sugar since sometimes the pituitary gland is affected by tumors like Jim’s. She also said he should wait at least 3 months from the date of his last seizure to drive, and probably more like 6 months.

We have faced challenges like getting an extension on Jim’s disability leave and getting bills that our insurance says were submitted incorrectly. Jim has felt well enough to be making phone calls regarding these and has made good progress on resolving the billing issues and his leave is approved through December 7th and will be extended on a month by month basis depending on the notes that are received from his doctors.

Jim got to go out to dinner with his work group to celebrate finishing a large project that he has been involved in. It was good for him to see them all and be included. Two of his co-workers came over and got our winter tires on 2 cars. Jim and I also attended Emmett’s soccer banquet. Emmett got the “Game Changer” award. It was a fun evening and I’m so glad that Jim could go.

Emmett got asked to the Sadie Hawkins dance and it will be his first official high school dance. His date knocked on our door and ran, leaving a sign behind. So Emmett answered with a sign left at her door in the same way.

Today (Friday, Nov 15) Jim had his radiation planning CT. This involved learning a little more about radiation, starting an IV for administering contrast, making the mask that is used for doing radiation, and doing the CT. The mask making is really interesting. It starts out as a solid piece of perforated plastic. It goes in a hot water bath to make it super pliable. Jim was all lined up on a CT table with laser guidance. The mask was stretched over his face and attached to the table. He said he had a moment of claustrophobia. Cool wash cloths were used to help cool the mask and then it was removed. Then they did the CT scan. Jim looked at it with the radiation oncologist. He has a little fluid in his sinuses which could be a sign of upper respiratory infection. He was a little congested with a runny nose a few weeks ago, so it could be lingering from that or it could be something new developing. We will get some antibiotics to have just in case.

Jim also called an optometry office that specializes in vision therapy. We are considering trying something like that to help him with his current vision and see if any improvements can be made. They thought that waiting until radiation treatments are done might be best since radiation sometimes affects vision. It may be something that is not covered by insurance also.