I still have GI issues but a lot of it is finding the right balance of all of my medications. I started having the skin manifestations. It looks like white heads all around my nose and chin and is painful. My younger sisters sent me skin care products that are helping. I saw my dermatologist that started an antibiotic ointment too.
The last symptom I'm dealing with is the dry skin. Wearing gloves at work and sanitizing and washing my hands frequently make it worse. I am getting cracks which are painful and burn.
I kept telling Wil that I've had worse and that is true. Traditional chemo was SO MUCH worse. The nausea was a lot worse, there was fatigue, and it affected my immune system. This oral chemo doesn't affect my white blood cell count which is very important during a pandemic!
Wil and I took our trip up to Baltimore to be seen at Johns Hopkins. We can look back and laugh at it now but it felt like almost everything went wrong with the logistics.
To start, we got a rental car and had to drive to the airport (40 mins away) to pick it up. When we were almost there, I realized I didn't pack my chemo. Well, that can't happen so we were going to have to backtrack and waste over an hour to get it.
Then the airport was having construction which was difficult to figure out how to get to the rental car place and parking deck. The first car we got in reeked of cigarettes, so had to walk all the way back into the airport to get another car. We did get a BMW which was a sweet ride.
We had a hotel at the inner harbor. I was able to go out to dinner with my work friend, Lindsay, who I hadn't seen since Parker was born. It was great to catch up with her!
The next morning, Wil and I walked around the inner harbor before our appointment at Johns Hopkins. We made our way to the hospital, which was HUGE. Overall, it was a good visit. The resident told us that I had the most records sent over that she had ever seen. I told her I accumulated at lot over the last 8 years.
The news we received was that they agreed with the current oral chemo treatment and had other patients have great quality of life on it. The doctor recommended only doing one chemo at a time. Her recommendation was to give this oral chemo 9-12 weeks and rescan. If the tumor is stable or shrinks, then it is a good treatment and to continue. If the spots grow, then time to consider other options of therapy. We are also now an established patient, so in the future we can send a MyChart message to get a second opinion or see if I qualify for a trial drug.
We celebrated with a seafood lunch . I wanted crab too but the taste made my nausea act up. Wil had no problem finishing off the crab soup and crab cake by himself. He made it disappear so quickly!
We took a slight detour and walked around DC before we went to my Uncle Mike's and Jean's for the night . We both had a lot of fun and need to come back soon. We only got one picture with Uncle Mike and Jean, and it was of their sweet dog Nugget!
We might've felt like logistics were going wrong, but it was totally God's timing at work that we couldn't see in the moment - the last stop before turning in the rental car was at a rest area where I ended up doing CPR on a heroin overdose. It had been almost a decade since the last time I had done CPR but my training kicked right in and all we know is God used us to help that man out and we pray he is doing much better now.
Our prayer requests:
1. Prayers for this chemo to be effective and show no signs of disease on the follow up scan.
2. Praise the nausea is under better control as well as the skin issues.
3. Prayers for me to be protected from the rare but severe side effects to the current chemo.
Thank you again for all my prayer warriors! We serve a big God who can do big things.
