Jax Recap & Spring Break

I guess we just took pictures of all the fun parts of Jacksonville. It looks like all we did was eat, eat, eat. I’m not complaining, we did eat really good food. I would rather do outpatient treatments every single time. Getting to go “home” to a hotel, look at the beach before & after treatment, sleep all night, and eat real food was amazing. I guess when you compare it to staying in the hospital, it’s pretty easy to pick a winner.

The downside was that we were at MD Anderson around 0630 CST both days. On Monday it was labs, a doctor’s appointment, and IV chemo infusions for about 4 hours. Tuesday was another IV chemo infusion, then a gap for lunch, then intrathecal injections. The intrathecal injections are not a ton of fun, but aren’t terrible. If you’re familiar with a spinal lumbar puncture or an epidural, it is pretty similar. During cycle 1, they attempted to do it at the bedside, but after several failed attempts, they now do mine in interventional radiology. I’ve had it done 4 times. Occasionally it can cause excruciating pain down the leg or in the groin, while they find the correct spot in the spinal canal, but that is usually temporary. Basically the procedure involves slowly injecting chemotherapy and other medications directly into the cerebrospinal fluid (CSF) in order to coat my spinal cord and brain with the medications, and decrease the risk of the cancer spreading to my brain. After that it’s laying flat and still, usually staring at the ceiling, for 1 – 2 hours before being able to return to a vertical position. Thankfully I have not had any adverse effects, such as CSF leakage from the puncture site, severe headache, dizziness, nausea, vomiting, etc. The trip to Jacksonville was short, but the days were long. Being able to celebrate each day with a beach view and a good meal was refreshing. We were glad to leave Jacksonville on Wednesday in time to pickup the kids from school. Trying to maintain some normalcy of the kids’ schedules is not easy to do with chemo treatments happening 250 miles away, so it’s nice when we can make it happen.

Then end of last week was tough. Neither Joy nor I felt great. Joy was able to get the first Covid vaccine late Wednesday, and felt pretty uncomfortable, complaining of a sore arm, achiness, fatigue, and flu-like symptoms for a few days afterwards. I started having my usual post-chemo low feeling. I only know how to describe it as “feeling blah”. It involves constant fatigue, nausea, bloating, mild headache, everything tasting bad, and just feeling “yuck”. Just like usual, it slowly improved a few days after my Neulasta injection. I still get tired easily, and usually sit down for a few minutes during basic activities to rest, but it seems to get a little better after each treatment. Thankfully, we’re both feeling better.

Spring Break is now in full swing. Since I’m back and forth with being immunocompromised, and we’ve been traveling I-10 way too frequently, we’re just staying at home. We are trying to spend some time together as a family. This usually involves the kids complaining about having to do anything that doesn’t involve being nose-to-screen with an electronic device, and us trying to break them away from the devices with chores or the lure of a heated swimming pool.

Next week I’ll be back at Baptist Hospital in Jacksonville for the remainder of cycle 3. This time it’ll be inpatient treatment. No beach hotels. No full night sleep. No seafood. Last time, IV Methotrexate caused me a lot of painful mouth sores, ulcers, thrush, and difficulty swallowing. It was miserable for quite a few days. But again, preventing brain cancer is kind of important, and apparently methotrexate is not one that I should skip, in spite of me asking the physician repeatedly. I’m dreading doing it again. In fact, I’ve been dreading it for weeks. I’m not much of a worrier, but thinking about it makes me a little anxious. As always in these situations, they say it helps to focus on one day at a time. So, I’m going to try to enjoy this week with the kids and worry about next week as it occurs. This reminds me of a Bible verse I really like: “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34”. It’s really true, and the second part makes me smile. Why worry about tomorrow, when there’s enough to worry about today? I can’t argue with that.

Please pray next week’s IV methotrexate treatment goes smoothly, with minimal side effects, and that I get to come back home soon.