Oy vey. Yesterday I cleaned out the back of my car and found an unopened Christmas gift. To me. Signed with ❤ Me. And I have no idea who Me is.
My memory has suffered some very big hits in the past few years. What heavy drugs (platinum chemotherapy) didn’t take, my current therapy—designed to cross the blood brain barrier—has.
At first it was beyond distressing, this wiping of my memory. I am someone who always tries to look at the bright side and if there is a bright side to cognitive challenges it might be that you view the world in a more child like way again. Everything is fresh, if you will. For an artist that can be a good thing, and I think it was maybe useful to leave some baggage behind at a time in my life when I was starting over.
Gradually many of my memories are returning, but as they went missing for so long my relationship to them is not as solid as I would like it to be. When I try to recall something often parts are missing and I’m just not certain about the details. It’s really frustrating and sometimes very sad. But It is what it is. I am alive and well and making new memories.
Back to my gift. Inside was a funny little Doll with this written on it’s chest: WHENEVER THINGS DON’T GO SO WELL, AND YOU WANT TO HIT THE WALL AND YELL, HERE’S A LITTLE DAMMIT DOLL, THAT YOU CAN’T DO WITHOUT. JUST GRASP IT FIRMLY BY THE LEGS AND FIND A PLACE TO SLAM IT. AND AS YOU WHACK THE STUFFING OUT YELL “DAMMIT! DAMMIT! DAMMIT!”
And as if that weren’t enough to make it all better, there were also two boxes of bandaids. One with big girl pants on them and the other with smiley faces and positive affirmations. Someone is looking out for me—now just help me remember how/who/where my lovely gift came from!
As a lung cancer patient, I really enjoy reading your blog. Thank you so much for your inspiration. I would never have known about treatments other than chemo had I not read this blog, thus I was able to have the courage to question my old school oncologists and seek out better treatment options at a research clinic.
Yea for better treatment options and good for you becoming your own best advocate! And thanks for the kind words.
Love this. Relate so well. My positive thoughts go out to you. Enjoy your blogs brave and honest woman!
Sent from my iPad
Thank you—I eat those positive thoughts right up.
Dearest Linnea — Guess Who???
Me, I figured it was you.
What a wonderful gift idea!
What a great gift!! We have to have a sense of humor with our memory aka “Chemo brain”! I kissed my husband goodnight last week as he was sitting in his chair & headed to the bathroom to brush my teeth. After I was done I walked back to his chair & kissed him goodnight again. He smiled & said “you just kissed me goodnight a few minutes ago”. “Really?”.. I said. He nodded yes. I told him it was double the love. Thank you for writing Linnea. Your post are always an inspiration.
What a great story Katie and your double the love response was perfect. And thanks for the kind words.
LUV IT. PLUS FRANK LOYD WRIGHT TO BOOT.
Thanks friend—and yes, my Dammit Doll is artfully dressed.
High Linnea, very happy to have you back. I did not see any activity on your blog for some time. I almost gave up on you. I thought you Pharma letter was spot on.
I have been in 3 clinical trials and lots of CT scans (well over 50) and at least 15 MRI’s, 3 lung biopsy’s and 2 liver biopsy’s. I live in PA and had to travel to Manhatten every 3 weeks. Just to get there and back home, I would spend $120 each time. We asked about compensation but to no avail.
My last trial was an immunotherapy trial. DIdn’t work and my cancer advanced. It was decided that I go back to Carboplatin and Taxal. I did 6 cycles and then needed a break. I am presently taking Alectinib which I was in the clinical trial. I had some issues with my insurance regarding coverage because the drug was just approved by the FDA.
When I spoke with the folks at Genentech about getting the drug for free, since I was one of the reasons the drug got approved, I think I heard a chuckle on the other end of the phone line.
Good to know you are doing well. Wow 10 years. I am at 6.5 years.
I look forward to readimg more from you.
Larry, I am glad you asked but not necessarily surprised per the chuckle. Of course, you already know how I feel about that 😉 Thanks for not giving up on me—-I had an extended breather. Here’s hoping the second go around with Alectinib is successful.