Fun at Corey’s Crusade and Radicava Round 1, Days 1 through 10

On October 21 we went to Clairmont Country Club in Piedmont, California for the annual Corey’s Crusade fundraiser for ALS TDI. Corey was diagnosed in college. This was his 10th annual party (He is now 31). Every year the party has had a different theme. For this party we could choose a theme for a costume from any of the previous 9 themes.

Margaritaville, Safari, the Beatles, Masquerade, Midnight in Paris, Western, Super Hero, Havana Nights, and Purple Rain.

Stan was a Parrot Head for the Margaritaville theme and Andy chose Purple Rain. I was a superhero of sorts, the Beauty who Killed the Beast.

Andy added round purple sunglasses and purple beads that they had at the party. You will have to wait for Halloween for a good photo of my costume. 
A selfie we took on the way in
With Jen from ALS TDI. We love you Jen! You can see the giant gorilla hand around me. But I promise a better photo on Halloween.

It was a great party where we saw friends and met many nice people. And I am sure they raised a lot of money. We stayed in Walnut Creek because we had to be back in Reno for the 1 pm show Beautiful – Carole King the Musical. I did my Radicava infusion and ate my feeding tube breakfast while Stan and Andy went down to the hotel breakfast. Then we packed up quick and hit the road. We made it by 12:55 pm. This was an 85th birthday present for my dad. It was nice to share such a wonderful show with my dad and Anita and Stan and Andy. Even Andy liked the show.

I have now completed over a week of Radicava. The first few nights I felt that I was sleeping better. I have been remembering dreams again. But by the 4th and 5th day I was having runny nose and lots of thin post nasal drip. There was so much I thought it must be an allergic reaction. We notified Searchlight of a possible reaction. But the next day Stan talked to two different pharmacists from Option Care. They said that it is possible to have an initial reaction to port medicine and it would go away with time. They also said see how I feel on the off weeks. So I loaded up on Benadryl and Sudafed, and I am still hoping for a freeze. I am watching those low overnight forecasts. Come on cold weather!

I can’t swim until a month after my port surgery, which will  be November 11. I can’t wait to get back in the pool. I feel better when I am doing all those range of motion exercises. I will have to start doing them at home for the next two weeks. For the next round of Radicava we have a little more flexibility. It will be ten of 14 days so we can do 5 days on then take the needle out and I can have two days to swim and shower without plastic wrap, and then do the second 5 days. We looked at the November calendar and maximized the days I could swim. I also will explore ways to cover the needle so I can do aqua fitness and stay in shallow water.

My friend Erika came up from Eldorado Hills, California for a quick visit. She learned how to do my infusion. I am able to do the infusion myself now but someday I may need help.

I am so blessed to have wonderful friends and Erika is the best of the best!

3 thoughts on “Fun at Corey’s Crusade and Radicava Round 1, Days 1 through 10

  1. Meg, I never cease to be amazed by your stamina, boundless energy and positive outlook. I’m so happy you have such good help and good times with courageous friends who have ALS. So happy to hear the fundraiser was a success, and your infusion therapy has begun. Glad to hear you shared a birthday dinner with your dad, and the family!
    Keep strong, sweet survivor. Joyce

    Liked by 1 person

  2. After 85 years there aren’t many things that impress me, however the thoughtfulness of Meg and Stan to gift tickets to “Beautiful – Carole King the Musical” and the high quality of the performance are right up there. But sharing their company at the show and after was the real highlight. They were worn out after a 4 hour, high-speed drive from California, but still managed to put smiles on their faces. And Andy’s thoughts on his trip and the ending of his year as a varsity cross-country team member were inspiring.

    Thanks, Meg, Stan and Andy,
    John Saunders

    Liked by 1 person

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