Wednesday, December 19, 2018

California Dreamin’

Jason and I got married in a perfect, tiny ceremony on the beach in San Clemente, California, then honeymooned in nearby San Diego. On each anniversary, we show our kids the wedding video, and every year they ask if they could see where we got married.

Our little crew has never been on a family vacation. Yes, we road trip to Minnesota every summer to see my parents, and while I find that wonderfully relaxing, it’s not really a family vacation.

There is an improv festival coming up in San Diego, and the League of Pointless Improvisers (the Pointless cast) got accepted to perform in it.

...do you see where I am going with this?

These past few months have been rough. Frankly, these past 5.5 years have been hard, but the last few months have been particularly challenging. And the road forward remains unclear.

So we decided, come hell or high water, we are going to California!

Jason pointed out to me that Disneyland and LEGOLAND are in California, too. I’m well aware what a challenging time this has been for Jason and I, but I’d be a fool if I didn’t recognize how hard this has been on the kiddos, too. They deserve some fun.



I spent today anxiously waiting for my MRI results, the first MRI after 6 weeks on my fancy new TKI drug, Lorlatinib. It is my third TKI, and I’d be lying if I said I wasn’t getting nervous that I’m on #3 of the 4 that have been developed for ROS1 (and #4 is only up to phase 1 in clinical trials). I called the cancer center and left a message, saying I was waiting for results. They said they would call me back when my doctor was available.

So 2 hours later I called again (I am bad at waiting), and they said they know I called, and they will call me back.

An hour later I just about jumped out of my skin when my phone rang. It was a nurse saying that my doctor would call me tonight, after he finished in clinic. That sounded terribly ominous, and I was shaking so much I felt like I could barely stand.

Finally, tonight, my doctor called.

Frustratingly, we are back in the vague land of “slight enhancements”. My doctor feels (and I agree) that it is too soon to make a call whether or not this drug is working for me, especially with such vague results, so I am staying on the drug and we are rescanning in 4 weeks. Back on the emotional rollercoaster. This is exhausting.

But we are going to California, dammit! A week to forget about all of this and just be together! Fun, family memories, and adventures await!

7 comments:

www.outlivinglungcancer.com said...

Hey---this has been a rough few years but you are one tough cookie. I am so happy you are going to California. Go, have fun, soak it all in. And here's hoping the next scans show improvement.

xoxo Linnea

Unknown said...

Sounds like SoCal will be a huge recharge for your family!! Studies show that kids who grow up with tough challenges are more successful in life. So there you go...the silver lining. Hugs.

Anonymous said...

Combined effect of cabozantinib and gefitinib in crizotinib-resistant lung tumors harboring ROS1 fusions. - PubMed - NCBI
Combined effect of cabozantinib and gefitinib in crizotinib-resistant lung tumors harboring ROS1 fusions. - PubMed - NCBI
Have you tried cabozantinib?
Enjoy your vacation. I also suggest Balboa park and the sea lions on La Jolla shores and the Birch Aquarium.

Anonymous said...

I love your blog! You're such a great writer!! I'm so happy that you and your family are going to California to enjoy some much needed vacations - no one deserves it more! Happy Holidays!!

Anonymous said...

Sorry that there might be another hurdle coming up, but you always pull through!!
I am confident that it is just a small bump.
Have fun in SoCal! Your family will enjoy Legoland and Disneyland a lot!
Our family LOVE to eat dinner at Storyteller's cafe (in the hotel area) because it is quieter and yummy. There're secret "resting spots" all around the park to take breaks. Also, if you don't mind cooler weather, bring swimsuit/trunks! :)
Your family deserve a break from all the frantic, uncertainty that comes with what we have.

Health, happiness, and hope!!
Alice

DONALD BOYKINS said...
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candrol said...

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