October 19th – November 4th
Before I was diagnosed I had 3 fun trips planned for the end of the year. I love to travel, but it is not typical to have this many trips planned in just 3 months. When I was diagnosed I thought I would need to put these plans to the side, but Dr. Stokoe told me to keep my plans and we would play it by ear. He said this is the time you need to enjoy and live life. This gave me so much hope from the first meeting.
I tell you all of this at the risk of sounding braggy, but I decided I needed to tell you because I want you to know life can be almost NORMAL and even AMAZING. Yes, you have some bad days, but you can also have a lot of really great days. That hope is worth celebrating all the time but especially when you are going through this.
Right before my 2nd round, I had a trip planned to my FAVORITE place in the USA – Napa Valley. Chris and I, and our great friends, Todd and Krystal had a 3 day weekend planned and when I felt great and had AWESOME white blood cell counts after we were on our way. I was worried the metallic taste would put a damper on the wine tasting, but God helped me out and it went away for the most part right as we took off. We had the best weather and it was the best weekend for friendship, connection, and love. Chris and I laughed and cried, talked about the future and the kids and retirement. I felt like I would have before any of this had started and that normalcy felt amazing!
As soon as we returned, I worked a couple of days and then had my 2nd round which was 3 weeks after round 1. My first round they only gave me 3 drugs, since Prejeta was not approved by insurance yet. This round it was approved so I had the full gamut – TCHP. I had experienced the first round and described those side effects and Prejeta is supposed to add bad diarrhea. My nurse told me it is not if you get it, it is when. This made me a little nervous because I had another trip planned. I was also nervous about going because I was supposed leave Sunday after round 2 which in round 1 was one of my worst days.
The drugs they give me for nausea knock me out and I asked my nurse if I had to take them. She has me take them at night instead which was a DIFFERNCE MAKER. I took Zantac during the day and the Olanzapine at night. I read more about this drug which is why I asked the nurse if I had to take it – many use it for schizophrenia and bipolar disorder. No wonder it was knocking me out.
My trip was a girls trip. It was with my mom, my best friend and her mom. Julie and I have been best friends since college and had a girls trip each year we were in college with our mom’s who also worked together. It had been 20 years since the 4 of us took a trip together so this was one I really did not want to miss. Everyone was concerned about the timing, but I thought, I could be tired and weak on the beach or in my bed at home – I choose the BEACH. Off we went to Turks and all my worry was for not. Round 2 was BETTER than round 1. The airport transfers worried me because I knew I might be low energy, but I was actually better than the first round.
When we were in paradise, we would go on walks and I didn’t have the stamina I would normally, but I made it happen and enjoyed it. We took it it easy and had the most amazing momma-daughter and friend time. We hung out at the hotel in the morning and worked and I blogged some, in the afternoon went to the beach or pool and I made it out to dinner every night. You are supposed to relax on vacation so it was absolutely PERFECT!
What did go wrong?
I had an ABSOLUTE freak out moment because the day I washed my hair on the trip, I had a TON fall out. I filled a small trash can with hair. Chris had worked SO hard on these cold caps and I felt like we had failed. I didn’t think about taking a picture of the trash can and probably glad I didn’t because it was depressing. You do not lose hair right after CHEMO – it takes 14-21 days. I think mine took a little longer at about 25 days and that right hair loss was MASSIVE. I called my friend that had done cold caps during her fight and she told me to not lose hope, that the first round was her worse hair loss and it wouldn’t be as bad each time after. I won’t lie, I got on the floor and cried. I wanted my hair for me, for the kids, to maintain that seemed normal and this was a blow. I am trying to look on the bright side as I still have a lot of hair, I am just worried about losing this much each time and if I do not having enough to make it worth saving.
I do get diarrhea but not at the horrible inopportune time of traveling. How horrible would that have been? I only tell you this because my oncology nurse made such a big deal about this. Mine wasn’t horrible. They gave me 3 different drugs to take in case I couldn’t stop it. I took Imodium once and it put a stop to it. Not a big deal.
What no one told me: THE RASH!
We are flying home on Friday and my face is starting to break out a little. I don’t really have breakouts anymore, but didn’t think too much of it. By Saturday I knew something was wrong. I have what I think are whiteheads all over my face and over much of my body as well. If anyone told me about this, they mentioned it in passing and it didn’t register. I had whiteheads on my EYELIDS Y’ALL! To make matters worse our travel on Friday was horrible, lots of delays, had to re-route us and my bag with makeup was still in Miami. What does that mean? No makeup to cover this horribleness.
This picture does not even show how awful my face was. On Monday morning at 8am it was still horrible and I called the nurse, I wanted help! As if my face wasn’t bad enough – this was all over my body. I didn’t get a call back until 2:30pm which is SOOOO frustrating. They immediately called me in steroids and told me this was not uncommon. I was able to pick up the steroids by 4pm and by 6pm my face was so much better. That is how I knew it wasn’t just a breakout. The next morning I didn’t have a red spot on my face and barely on my body! SUCCESS!