Update March 10, 2024

My treatment days are an interesting mix of doctor appointments and waiting rooms.

I met with a palliative doctor Thursday morning, which was the best doctor visit I’ve ever had! His specialty is to deal with side effects and symptoms and help me get life somewhere closer to normal. It was really helpful. For more than an hour, he listened and helped me figure out how to manage the realities of my life. It was remarkable. One of the most valuable things I got out of it is that I need to get hobbies and fun things back into my life, even if it means taking more pain medication. He reminded me that emotional health is half the battle, and I shouldn’t try to get by with “just the most important things”. I’m playing in the mud again-Happy, Happy!!

After that was labs, where they take several tubes of blood so they can keep very tight tabs on all my “levels”. Then I start treatment with a cocktail of side effect prevention pills (like Tylenol, Benadryl, Pepcid, etc) and the all-important steroids, which are vital for every part of cancer treatment.

I had an IV this time for bone strengthening medicine, and that was a complete disaster. My nurse made an error with the IV and I was bleeding quite a bit out of the tube. She then tried to slow the bleeding by pressing on the needle hole with an ungloved finger, and both hands being occupied, couldn’t get the tube cap thing on the IV so Bill had to help (no gloves, no washing). I’ll just say, it wasn’t up to today’s standards of nursing or cleanliness, and it’s a good thing I’m not squeamish or want to see heads roll.  

She finally got the IV capped and cleaned all the blood up, then hooked up the IV bone strengthening medicine and went out to compose herself. Not even five minutes later, I called her back in (she was a nurse again, thankfully) and she had to stop the IV because it was making me really nauseous. All that, and I didn’t even get the benefit of the medicine😊. You really can’t win them all.

What I’ve discovered is that the cancer center has the scheduling down to a science, and although we spend a lot of time in the waiting rooms, during the treatment wait times, they schedule all kinds of professionals on the team to go over stuff with us. This time it was my oncologist’s nurse, and she went over treatment details for 45 minutes with me. It’s amazing how much they coordinate there. I’m really grateful for such a professional environment (with rare exceptions). I do feel like I’m in great (gloved) hands.

As for the bone strengthening medicine, the nurse said it’s still the very best one for me, and They’ll try again in a few weeks, much slower, so hopefully I’ll tolerate it and get the benefit of that drug.

 As for side effects, I had a fairly mild reaction the two days after the treatment. For the most part, they (aches, nausea, all over itching) came in the middle of the night, so I missed most of it. That was a blessing. I still had a rash on my face and neck the next day, but it wasn’t bad. I’ve had off and on GI issues and increasing nausea, which is not unexpected, but no fun.

The weirdest side effect so far is that food tastes different. Anything sweet (cookies, baked goods, etc) tastes like sour milk. Milk, yogurt and cream, which I usually love, are out of the question, and the only things that taste right are really savory foods. Very sadly, chocolate is absolutely disgusting. Thankfully, fruit is still good, I can still enjoy flavorful dinners, and amazingly, vegetables that I usually only politely tolerate are fairly good. I miss baked goods. Still, I’m pretty lucky that the nutritious stuff is still palatable. Maybe I’ll finally kick the sweet habit!

Other than the boring details of ups of good days and the downs of the bad ones, that’s my week. Thank you for your love and prayers!