As I suspected the last handful of days have been crazy.
The birthday. That was great considering I had a dentist appointment that day. I really dislike the dentist. Somehow, I managed to be showered with birthday gifts from my friends and family. At 36 this seems worthy of a giggle, but, I’m not turning them down!
Wednesday, scan day, was so-so. Things moved ahead of schedule which made my five stops at OHSU seem tolerable. I decided I don’t like brain MRIs. Clocking in at about 45 minutes and full of bangs and knocks. I would not be sad if they never happened again.
Dr S appointment yesterday was the pits. I learned that my cancer is growing; changing treatment is imperative. I showed several small spots in my brain. (Poo!) The reason I have not been symptomatic is because I have no brain swelling around the tumor locations. I suppose that is a good thing, the no swelling bit. Although, it is scary to think that other people out there have spots and are unaware of it too. I’ll begin whole brain radiation (WBR) next week – Tuesday. (I’d add a link to explain WBR but I’m not really ready to inform myself of what it will do to me.) I’m signed up for 14 treatments. Looks like I’m not getting out of future brain MRIs after all. Oh joy.
I stopped crizotinib yesterday. I will go back on chemo once my noggin is done getting hit with radiation. The type of chemo is to be determined. I showed some “thickened left lung wall lining” in the spot where I had cancer before. Could be growth; could be nothing. My rock star doc is going to be analyzing the images and comparing future approaches for attacking the cancer while I’m in radiation. I could keep on crizotinib, I could not. Looking 5 weeks out is not on my to-do list!
So, pretty much yesterday afternoon sucked. My 20-minute follow-up appointment with Dr S evolved into a 10-2:00 day at OHSU. I got to hand it to Dr S though. Once he shared the news with SW and I, he told us that the recommended radiation oncologist was already on his way down to meet me. He, Dr Holland, and his staff showed up rather quickly and gave us the WBR spiel. An hour later, we were headed to radiation oncology to cross T’s and dot I’s for me to begin treatment next week. Made for a long productive day.
The evening could not have been better. Eight of my dearest girlfriends came by to give me hugs, ice cream, chocolate, cheese, flowers, and GRAPEFRUIT! (The one fruit I was not allowed to eat while on crizotinib.) The only thing it took from me was a 2:30 shout out via email to the eight of them saying, “I need some love!” and they were there in an instant. (I love you all!) Thankfully, one skill I’ve fine tuned is asking for support when I need it.
Now, it’s Friday am. The sun is shining. My coffee tastes great. The cat did not poop at the front door. Besides my eye lids being the size of grapes life is pretty normal. I am nervous about what unfolds in the next few weeks. I am not ready to stop treatment (yet). All I can say is, bring it on!
Happy “Late” Birthday greetings. I don’t like Dentist, either. 36 you are just a babe. Hey i will be the oppoiste in June, 63 (but keep it a secret). I’m only as old as I feel, gee somedays its 83, ha.
So, it is time for the ‘ole radiation and chemo thing, we at PEC will certainly be thinking of you & SW, always in our prayers. Your Doc does sound amazing, what good action, getting team together so quick. I am glad your “Dearest Girlfriends” gave you the “LOVE”! You ask for the support any time. Glad to hear you are thankful that it’s Friday, sun shing (it is here too) good coffee and a very very good cat. I would like to be a cheerleader and shout “Go Kim, You are Great, bring it on and Keep your chin up kiddo………
Thanks Diane. I’ll take cheers any time of day any day of week. 🙂
Sending you lots of love and energy today. What a tough week. Lots of your work friends are here with me sending you all our support as well.
I’m needing all the support I can get. Send it my way!
you have a really strong support system (doctors, friends and yourself). praying hard that all turns out well.
oh Kimmy, like Gwendolyn, I will continue to “pray hard”.
Thank you both!
The things we do just to eek out a few more months or, hell, days. Are we nuts? Possibly.
PS- I gladly accept prayers of all sorts.
not nuts – every nanosecond counts, love, g
Email me if you wish – I have just been through WBR – finished 2 months ago.
Would love to connect. Email sent!
My heart sinks for you re. the brain mets. The way you nearly breeze over it, like announcing you spilled some wine on your sweater, amazes me. I’d be scared shitless – and I don’t even know what’s involved.
Does progression of the lung cancer indicate that you have become accustomed to crizotinib? Or is your stopping in order to begin radiation? As you know, there are effective treatments in your future. I personally know that the LDK378 trial has been effective for many patients who saw shrinkage while on crizotinib.
I agree that the Internet may not be your friend right now. Please stay strong, and thumb your nose at cancer! Every birthday is a milestone to be celebrated. xo
Oddly, this does not feel as bad as the hit I took when I learned my cancer spread after front line treatment. I knew with adenocarcinoma it was a very good possibility of happening. Still crappy tho!
My onc is going to measure the exact amount of progression (in the lung, brain does not count so much) to see if I can eek out some additional time on the crizotinib. Hopefully, I can, but right now it is up in the air. I’ll find out more in a week. We lightly talked about 4 options: 1. stay on crizotinib; 2. alimta; 3. LDK trial in Seattle, WA; & 4. a trial that OHSU might participate in that is also a second line ALK inhibitor.
Priority one is crushing the brain tumors. Priority two is not over analyzing forthcoming chemo. 🙂
I’ll do my best to stay strong. Thanks for caring!
I’m eager to hear if you get the dose reduction – feeling good time is the goal.
Holy le sigh, Kim. You’d think that meteorite should have had the two of us targeted. I told Mom I was keeping my eye on the sky all day yesterday after the week(s) I’ve had. I’m so sorry to hear we are partners in crime even moreso right now. I’m slated to start WBRT on the 25th. I haven’t wrapped my head around it, so to speak. If you want to talk or commiserate or yell together, do you have a way to get my email address from the comments? Oh, I hope you have a great weekend. I’m thinking of you.
What a pair, huh? You’ll be getting an email from me before the weekend is over. Crazy world we’re in!
I was wondering if they mentioned using Gamma Knife to you instead of WBR. If not, it might be worth some investigation. I underwent Gamma Knife procedure for three brain mets (the dude in front of me in line had 12!). There are few side effects (facial swelling for a few days afterward) but that’s it. The idea of WBR scares the living crap out of me. Wishing you strength and fortitude. From a fellow-stage IV-er.
I have quite a collection of spots; WBR is the best tool for the job in my case. Thankfully, we have the option to turn down the treatments that scare us.
Oh, what the what? I have very few websites bookmarked in an effort not to make myself completely crazy browsing the web, and brain mets seem to be everywhere lately. I’ve been on Crizotnib almost seven months and just finagled my way into getting a new MRI this week (this surely will be a long weekend leading up to my oncologist appointment on Monday!). My heart so goes out to you. Best wishes for you next week, and try to enjoy your grapefruit!
I wish you extremely boring images!
The grapefruit has been amazing. My mouth is a little tender from all of them though. 🙂
The week will be a good one. I’m growing quite fond of the idea that it is now my turn to pick on brain mets. Die cancer, die!
Damn Kim! You have guts and more!
As you know very well… there is no time like the present! (Kind of ironic since I’m listening to the song “living on borrowed time” by John Lennon right now.)
Sending lots of thoughts and prayers your way as you begin WBR this week!
Thanks Kelly. It’s an odd good feeling knowing that I’m going to start attacking the brain tumors on Tuesday. Scary. Yet good. I’m confident. Fight or flight has certainly kicked in… xoxo