Steroid Addiction

Unfortunately my wean off steroids failed. Sunday, July 16 was my first steroid-free day and I was so excited. I did well for a few days, but the following weekend we were away for a baseball tournament and I was struggling with walking to the field on flat ground. Hmmm, seems odd. Then I developed a low-grade fever which I attributed to pain I was having in my jaw which can be a side effect of the chemo I’m on. When I got home, I struggled even more as I needed to climbed stairs to go to bed so I called my doctor. They didn’t seem too concerned and had me come in for my regular pre-chemo appointment the next day where I was put back on steroids :( Unfortunately chemo was also delayed as they didn’t want to tank me any further than I already was, but I didn’t end up in the hospital.

On Thursday I went to the pulmonologist who scolded me for stopping steroids early. I didn’t realize I had. He had given me a step down schedule, which I followed. But, I guess he expected me to stay on the lowest dose until I saw him again. Oops. But, I’m glad I didn’t because this episode was resolved before my trip to Bethany Beach. If I stopped my steroids after seeing him, I could have had a problem at the beach.

Now my doctors are talking to see if there is a non-immunotherapy line of treatment they can try. The pulmonologist is convinced the inflammation in my lungs is still treatment related. If they can’t identify another treatment, I’ll stay on a low dose of steroids long-term. 

The good news is that there is an antibiotic you take with steroids and that has resolved my fever and ear pain. And I’m feeling better on the steroids so I’m in Bethany Beach enjoying myself while crashing Sara’s vacation. Toes in the sand along with a little boardwalk shopping is just what I need.

Moon Face

I took the last of this round of steroids yesterday so I’m hoping my cheeks start to shrink soon as well as my appetite!! Dr. Google says is can take weeks or months for moon face to go away. I sure hope not. Maybe I can help it along by increasing my fruit and veggies while reducing bagels and dessert! Does strawberry shortcake count as healthy?

Dan and I took a ride in the Chevelle this morning and I grabbed this pic. I don’t think my checks can be any bigger. I feel like me and would really like to see me when I look in the mirror. I still shock myself.

I’m wearing my Memphis shirt today because it is hot and we enjoyed bbq for Dan’s Father’s Day lunch. At least the shirt still fits! I’m afraid to try my swim suits. Hopefully I’m moving in the right direction starting today.

Unremarkable

While I’ve never aspired to be unremarkable, I was pleased to see that word along with ‘stable’ all over my CT scan results. I’ll take unremarkable all day long!!

I met with the doctor this morning and confirmed that the results of my scan showed that treatment is doing the job of maintaining disease. I pushed back as I really want to see less disease and it seems that some of the tumors in my lungs are slightly smaller. Overall, what is in my lungs is tiny in terms of disease. There is still fuzziness from pneumonitis which I guess is good as it explains why I still need supplemental oxygen and gives me hope that my reliance will get better as the lungs continue to clear. I hope.

So, I’ll stay on this line of treatment. Sassy and I are getting along. I hope it stays that way as the average time on this medication is 9 months. I’m at 7.

Clumsy

Can I blame being a complete klutz on a disease? This last week has been a doozy. 

Last Saturday I was cleaning out the vanity in my bathroom and managed to spill an entire bottle of skin so soft on the floor. And it was one of those big refill bottles so a significant spill. The house still smells. Luckily Sara was here to help me clean it up. The floor was really shiny!! Oh, and I decided to wash the towel we used to clean it up with a regular load of laundry. Not a good idea. The shirt I’m wearing now was in that load.

On Thursday I managed to trip UP a stair and landed on my knee. I’m fine and the knee is fine, but who falls up stairs?? 

On Friday, I spilled sweet & sour sauce on my keyboard while trying to eat dinner and work at the same time. Things seemed ok on Friday, the keys started to get a little stiff yesterday and the A totally doesn’t work this morning. Ha ha!! You just have to laugh. Luckily my parents taught me not to waste things so I never used the last new keyboard I received when my laptop was replaced… I had another one ready to go. I think the old keyboard was at least 10 years old and the letters were actually worn off the keys so it didn’t owe me anything, but what a way to go…drowning in red sauce…

In better news, I thoroughly enjoyed the day trip to Niagara on the Lake with Sara last Sunday. I found a couple of scarves that I love and we enjoyed a nice lunch. I’m ready for her to come back for afternoon tea.

Hopefully we’ll be on the boat and in the pool soon. And attending lots of baseball games! Come join us :)

My new scarves. I think I have a different scarf for every day of the year. But I still love picking out new ones.  The first one is reversible so it’s like I got 2!!