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.

I started a new chemo plan today – Gemzar and Carboplatin. My oncologist said it will be a little bit harder on my body but it will attack the cancer a different way.

I feel fine so far, but what he said makes me nervous. He said it’s nothing like my body was hit with originally 5 years ago. But 5 years ago I was in fabulous shape. Today, I needed a wheelchair to get into the infusion center. My body is not quite the same now as it was then.

I am so very thankful for the 10 day trip we were able to take to Walt Disney World. It was always a dream of ours to take our girls there. The girls are the perfect age right now as they will all remember it. I just wish we could have gone on the trip for a different reason. I am, however, thankful that we did it now as it’s getting more difficult and painful to move around.

Lots of people have been asking how the trip was, so let me start off telling you the people behind the scenes that helped make it extra magical. I’ll do at least one more post about the trip telling about other things.

Sorry for the lack of posts when we were on our trip. We were either busy doing something, or resting!

We flew in late Monday night and were driven home in a limo (the same one that took us there). Tom was exhausted, so I am very thankful he did not have to drive us home.

Overall, the trip was amazing. It took us about 4 days to settle in. It had been a long time since some of us had done much because of COVID. But once we settled in, we had some great times together as a family. Sometimes it was all of us, and sometimes, just a few of us.

Day 3….what is it about day 3 that makes it harder? Day 3 of the school week, day 3 of the work week, day 3 after chemo, day 3 of VBS, day 3 of Camp……the list could go on and on.. Vacation must be part of the hard day 3 thing as well, and no one ever told me. Day 3 in a Disney Park….not the best day we’ve ever had.

Today ended well. Valley Girls and Guys hired a photographer for us. So we took some Disney family photos around 6. (More on that later.)

Then we entered Epcot for a late dinner from The Boardwalk side, which is such an amazing resort! We had time to look around a few countries and then had dinner at The Coral Reef restaurant. Everything we ordered was wonderful.