This is day two of a week long visit from our twenty six year old son August. We hit the ground running yesterday, with a trip to Massachusetts General Hospital. David and Peter came along as well, and August got his first peek into this particular window of my life.
It turned out to be a bit much for him. A lack of geographical proximity has provided August with an emotional distance from my cancer; accompanying us on a visit to the hospital brought it all home, and shortly after we were shown to our private room, he broke down.
When Dr. Shaw came in, it was just David and myself. She asked some careful questions as to how I was feeling. Great, I said; heaps of energy and rock solid resolve. But when I lay down at night, the crackling/wheezing in my lungs was a potent reminder of where I was heading.
I had in fact just arrived: in clinical trial parlance, progression. Defined as (not 30%, as I stated in an earlier blog–now corrected) 20% progression from the nadir–or the least amount of measurable cancer in my lungs since starting trial. To break it down another way: A positive response in a clinical trial is defined as a 30% or greater reduction in tumor burden. Ultimately, my cancer decreased in measurable area by 63% ; that was my personal nadir. My latest CT scan shows a 21.8% increase from that lowest point. However, I still have approximately 40% less cancer than when I started this trial.
My cancer is returning or progressing relatively slowly and I continue to maintain an exceptionally high performance status, (ability to complete daily tasks). If this were a standardized rather than experimental treatment, I would undoubtedly eke several more serviceable months from it.
As a participant in a clinical trial, I am bound by protocol (literally). Happily, Dr. Shaw pulled a rabbit out of the hat; Novartis has agreed to let me to stay on LDK378 for one more cycle. We now have six weeks to figure out where to turn next, and that softens the blow considerably. Soon, I will embark on a new adventure. In the meantime, life will be lived to the fullest.
After saying goodbye to Dr. Shaw, we collected the boys and grabbed a late lunch. Not deterred by the fact that it was already half past three, we continued on to Ipswich and Crane Beach. Arriving just as the crowd for the day was thinning, we were met by clear skies and balmy weather. August and Peter took a quick dip in the chilly Atlantic and soaked up the late afternoon sun while David and I walked the length of the beach as the tide came in.
But we weren’t finished yet; August had requested dinner at the Clam Box, where the four of us worked our way through two enormous plates of fried clams.
Stuffed, but with much food for thought still on our plates, we headed home.
Great to see pictures of Crane Beach — and the fabled Clam Box, site of happy if sort of unsettling consumption. What good memories. Shining, like the light in the pictures. Keep the rock-solid resolve, dear Linnea. Love to Aug and your other boys.xoCristina
Thanks miss cris. Rock solid and hugs all around.
Being still 40% less than at the start of this trial sure seems a good thing, and I assume that “before” picture was much better than before you had tried Xalkori. That sure seems like a blessing worth counting despite the stress of needing a new tack in a couple of months.
Craig, you are correct, I am yet better off than I was before; no small thing moving forward.
“Stuffed, but with much food for thought still on our plates” … you capture soooo much with that phrase, you share soooo much with this entry – thank you.
Patrick, thank you.
love you momma. your granddogs are looking forward to giving you lots of kisses
Got those kisses and loved em!
Oh dearest Linnea- here is to millions of rabbits. I am happy that you are having a good visit with your collection of handsome guys. Thinking of you always!
You know, rabbit rabbit on the first of the month is a good thing so millions of rabbits may be better yet…may they multiply!
Dear Linnea – That’s the sad part of being in a clinical trial. You are still 40% better than how you were when you started the trial, yet they are threatening to cut you off… But I’m confident that you and Dr. Shaw will soon come up with the next good treatment plan. So, keep the worries to a minimum (I know it’s hard but please try), and enjoy the summer to the max with your lovely family! With much love, Yuki
Yuki, as a rule breaker at heart (ask my brother John; he deplored playing board games with me) it is hard to toe the line. But I did sign the protocol and so by the rules I must play. Glad I’ve got Dr. Shaw as referee.
love to you and yours,
Yuki said it so well! Ditto her post. Thinking and praying for you lots lately! We are actually in S. Dakota now vacationing with the family. In a day or so we will travel on to Montana and camp some in the mountains before heading home. Somehow being over 1500 miles from home really brings into perspective more of life and those you know in other parts of the country! Thinking of you! love, carol ann
Carol Ann, I hope your vacation was a wonderful one; it is always good to freshen our perspectives.
The pictures look fantastic – how wonderful that your family could get together and dig into some clams.
These photos make me miss you guys. Hi, Aug! Gorgeous light emanating (and not just from the sky). Ah, Clam Box memories… heart attack to the left of me, heart attack to the right of me. Love, love, love, Wendy
Wendy, we recounted our Clam Box experience with you and Miss Cris to August. And I must say, not much has changed (it remains an excessive experience all the way around, but oh so yummy once in a great while).
I still look froward to visiting your blog site and monitoring your journey. Sara and I loved both the Clam Box and Crane’s Beach! Nothing quite like summer.
I am sure Alice is hard at work thinking about what’s next-
Hey Pam, it is good to hear from you. Crane Beach and The Clam Box do epitomize summer in New England. Had we the stomach for it, we would have gone to White Farms for key lime pie ice cream cones as well.
It feels like so much time has past since you posted this but it has only been 2.5 weeks. Not much time left in your 6 week cycle. Wishing you the best decision making skills on the planet times 10!
Kimmy, thanks for keeping me in mind. I see Alice Tuesday and I would imagine we will begin our presumptive chat. Also, you’re up next (I plan to post the blog tomorrow–will let you know!)