Here we go!

Well, I kept waiting to make this website public and share the page until we had a plan. I probably should have shared the website when I first typed the last post because now I’m realizing this is a lot of info between the first post which I actually wrote 3 weeks ago and today’s post. But, we have a detailed plan and schedule! (Finally…the waiting for insurance things to sort out has been frustrating and difficult; lots of phone calls to the doctors office and the insurance; daily.)

Most of you know how much I love having a plan and schedule even if it changes and has to be morphed fairly promptly. So far this one is “sticking”.

I will have my first chemotherapy/immunotherapy treatment on Thursday, 4/28. Some of you may be familiar with how this works, but this was all new to me. Everything is done via a cycle. In my case, it’s a 3 week cycle for this first bit (done 4 times). So:

• Day 1: I get chemotherapy (Carboplatin and Paclitaxel)l & immunotherapy (Keytruda)

• Days 8 & 15: I get chemotherapy only (Paclitaxel)

• Repeat the above every 3 weeks for 12 weeks for a total of 4 cycles. Then the drugs will change for the next set of cycles for another 8-12 weeks.

On Friday, 4/22, we met with the nurse who will give me the first round for a teaching appointment. She walked through all the potential side effects and all the things she wanted me to do to help prevent things and keep myself healthy and functioning in the face of these side effects. I’m going to need a spreadsheet to track it all…but it’s doable for sure. I was very impressed with the nurse and she was very knowledgeable, it made me feel good to know that she’d be caring for me.

In general, we’re very glad to be getting the treatment going. It’s a relief to finally get moving with this even if I’m a bit scared of the side effects and how I will feel. That being said, I know many amazing women who have done this and so if they can do this, I’m sure I can too!

We’ve decided to be fairly open about how things are going. We both feel very strongly that this type of illness has less strength when one is open and communicative about it. Please don’t be afraid to ask how it’s going…note, though, you might get a real answer and some days will be harder than others.

We also appreciate your patience with responses. If you comment, email, call, or text, you may not get an answer right away. And while we’ll try to answer, there may be many times when we just don’t get there. Thank you for understanding that it takes a lot of energy to communicate what’s going on and sometimes we just won’t have it in us to communicate directly with everyone personally on a 1:1 basis. We’ll try to keep this webpage up to date so that everyone can stay informed though with the latest! As always, we can’t thank you enough for your support and care – we are so grateful and please know it means so much.

Also, we did change email notification services so if you signed up before, please sign up again for notifications just in case!