The Anesthesiologist that did my surgery, Dr. Otsu, said surgery went well on Tuesday. He is the one who I will be working with to control the medicine in the pain pump. He took off half of my Fentanyl patches during surgery and it took about 24 hours of working with doctors, nurses and pharmacists to get the pain back to where it was manageable. That was a long 24 hours of severe pain!

I messaged my Palliative Care Dr. in the early afternoon. (Her and the ARNP she works with are amazing!) I’m so glad I did. Things moved faster once they were part of it as they are used to dealing with the large amounts of narcotics I am on for pain.

I woke up not feeling very good this morning. But that didn’t matter because I still had to get up and have a covid test and go to chemo. My heart rate was in the 120’s so they gave me a bag of fluid and that brought it down. I have never seen it stay that high before.

Yep. My hair is growing and it’s going to be time for a hair cut sometime soon. How exciting! Hair loss is possible on this chemo, but so far, it’s growing. We’ll see what the next cycle brings. 🙂

I’ve noticed this new chemo is effecting my skin. It’s very dry. I have ton’s of dandruff and every time I take off clothes, I see skin flying in the air. Yuck!!!! Yuck!!!!!!! Yuck!!!!!!! My skin is so dry. So I’m starting to put on lotion every day and I’m sure that will help. I probably should shower more often as well, it’s just a pain to put on a shower shield every time to cover up the catheter we use to drain my lung.

Yesterday, I felt great. I had quite a bit of energy and did more than I usually do. Today I slept in ’til almost 12 and even then had a hard time waking up. It’s 3pm now and I’m more awake, thank goodness. We drained my lung again this morning and I can breath better. It’s a very different day than yesterday.

I’ve now completed the first cycle with this new chemo. I’m very fatigued and have some nausea off and on, which Compazine takes care of. I also have a funny taste in my mouth most of the time. So far, those are the main side effects. I’m taking 80% of the full dose I’m allowed and after talking to the Dr. today, we are going to leave it at that. This next week I have off of chemo and then the following week I’ll start up again. We’ll scan again after 3 or 4 cycles to see how this medicine is working.

My pain is under control with the Fentanyl patches and Oxy, but since I am on the high end of what I can take with both of those drugs, it looks like I need to go ahead with the pain pump. The surgery is tentatively scheduled for Tuesday the 18th, checking in at 11 am. While I’m nervous about the size of the device itself, I can’t find much online about people complaining about it once it’s in. So I guess I’ve decided yes about it after praying and talking to the doctors and Tom.

In the infusion center there is a bell that patients get to ring when they finish chemo. The nurses come out and clap and cheer for them. It’s a nice way to celebrate being done with treatment. The bell wasn’t here when I finished 5 years ago, so I never got to ring it. It wasn’t a big deal for me then.

But what about now?

When I am done with chemo, it will be because it is either no longer working and there is nothing else we can do medically, or I chose to stop it because I am too weary to continue.

It’s not a time I would want to ring a bell, nor do I think it would be offered.

First, if you are having trouble accessing my blog, I’m sorry. I’m working on it. 🙂 Please don’t give up!

Today, Tom and I spent most of the afternoon at Valley talking with an anesthesiologist about getting a pain pump (Intracathecal pump) to handle my pain because of the large amount of pain meds I am on. It would distribute pain meds directly into my spinal fluid at a steady rate and is much more concentrated. So today we learned about the pump and they did a test injection in my lower back to see how my body would respond to the medicine (Dilaudid). I responded well and he thinks I am a good candidate for one. Tom and I will talk about it and we’ll talk with my other doctors and make a decision. It requires a 3-4 hour surgery to implant the pump, but if it controls my pain better, then it’s worth it. (The pump itself is very large….wish I didn’t see it. I’ve been through a lot and not many things freak me out, but it’s about the size of a retainer case (but round). That’s huge!!

Quick post today….please pray for my lungs. I’ve been having trouble breathing the past couple days. I’ve drained my lung a few times and it is still very uncomfortable to breathe. Tom called the oncology nurse to see what I should do. Every time I stood up, my pulse went really high and I had trouble breathing. She said, before going to the ER, take a bit more pain medicine so I could take deeper breaths. Also, to drain my lung again, even though we just did it yesterday morning. If that didn’t help, then we needed to call back and possibly head to the ER.

I am thankful that that worked and so far I am still at home.

So far no real side effects that I notice from the new chemo. I am thankful for that.