Where We Are At

[chixter]

It is with a sad heart that I post the news that we are in the final stages of this struggle. After consulting with the team at MSK and our local oncologist, Katie has made the decision not to pursue further treatments. We have signed on with Home Hospice out of Meridian Health today. We looked at the Y-90 option... the radiologists won’t touch it because to be effective, they would have to irradiate 2/3rds of her liver. The Stivarga was only viable chemical option. In a collective opinion of her team, it has about a 10% chance of being effective of halting progression and that is at the maximum dose. The probable side effects of this drug would be quite harsh given her condition. Kate has had it with this. For the last 3 weeks she has been chemo free and despite disease progression, is awake more, eats more, and is quite comfortable in her hospital type bed in her den. She is connected to her friends via social media, has her music system, TV and movies. Her bathroom is just down the hall (we put a commode height increaser on the toilet). She is home in her surroundings with her boyfriend, her mom and dad, and her beloved animals a cat and 2 dogs. She wishes this now more than anything and indicated that to the Hospice people today. She is managing her pain well with her scripts, and now that Hospice is on board, the team will keep her that way. Objective = comfortable as possible for as long as possible. Home at all costs.

Kate does not want anyone to think she is just giving up. The reality is, she never had a chance to fight. At the time of Dx she had numerous liver mets further testing indicated genome variations that are extremely resistant to chemo drugs, and a very rare and aggressive type of neuroendocrine primary cancer. Remember all you new Clubbers…her condition is not typical in the least. If she had “normal” adenocarcinoma the FOLFOX, or FOLFIRI would have at least put a dent in things. 5 tx of each did nothing, not even a slowdown. It SUCKS.

Now, heres where y’all come in. I need MEGA chicken swinging for an event. One of Kates Bucket List items was to see Tom Petty in concert. We acquired 4 tickets for the Sept. 15th show at Philly Wells Fargo Center. By all the G~ds, The Blood of Oden, and all that is in me I want to get her to this concert. She will be wheelie-chair bound but Wifey talked to the peeps at the event…they have a special place for us handicappers to be, actually better than our original seats. I want this so bad for her, even if we can’t stay the entire duration. So Voodoo, Santa-Ria, Wicca, prayers, chickens, frogs…for energy that she can hold out and be strong enough to make this.

Oh, and as a follow up to a prior post…I got my colonoscopy done this morning. Yippi i-o ki yay. Clean. GI said I did an excellent prep {ya that’s what sitting on a throne all night with a gallon of Mirilax in you will do} He removed a “very small polyp”. He waved his hand and told me they send it to pathology as matter of course but in his opinion its nothing. He does about 12 of these per day for the last 20 years, so I guess he knows what he’s looking at. Follow up in 2 weeks after path report. I got to see my 3 diverticula holes…yea the guy took photos to show me.

So, that’s what’s going on here at the Jersey beach near the end of this terrible summer. I know I can count on your energies.

Peace, Greg

[Bev G]

Greg, I just wanted you to know I read this, but I've got absolutely nothing right now. I hate that I don't because I so desperately want to say something comforting to you. I.JUST.CAN'T.RIGHT.NOW. I am beyond as sorry as I could possibly be, and will write again. Praying for the concert.

Love,

Bev

Really glad you got the scope done, and it was negative.

[SugarBubbie]

My heart is so torn for you.......

In my back yard now, I just saw two of the biggest hawks I have ever seen in my life. They were absolutely beautiful and awesome as they flew away. I wondered if it meant anything and now I do as that was the first thing I thought about after reading your post. Your beautiful daughter has me swinging hawks for her. I hope it works!!

[Nixma]

I'm swinging chickens and sending lots of positive energy your way and will continue to do so.

[Easyflip]

Greg,
You are a great Dad. Being a father myself I can't imagine the heartache you must be feeling. Big energy to your whole family.
Congrats on the clean screening
Easyflip/Richard

[Marian1961]

I can't even imagine the extent of your heartache. I'm sorry, for all of you, cat and dogs included. Sending energy, peace, love for a great concert, a pain free night of joy for Kate!

[Staci's team]

What a load of sucknitude, Greg. Those who have been around for awhile will recognize the depth of emotion, prayer, and support I send when I say that I send you "my strongest thoughts."

I am glad to hear that Katie is able to spend her time free from pain. Hard as it may be for some to hear, I have appreciated your forthrightness throughout all of your posts. Thank you also for reminding the newbies that Katie's situation is atypical. Your perspective has been a wonderful addition to this board, and I look forward to being able to read of it for a long time to come.


Chris

[esk2poo]

Greg,
So sorry to hear this. I will be praying hard. For strength to make it tot the concert, for pain free time, and for peace for Katie, you, and all of your family.
God bless,
Allen

[ziggymonster]

Greg, I am sorry for all that Katie and her family have gone thru in dealing with this effing disease.....I hope Katie enjoys her concert and stays comfortable free from any pain. Positive thoughts to all.

[Rob in PA]

Praying. Swinging poultry. Hoping Katie can keep on "running down her dreams" with tom petty at the concert. One of my favorite groups.
peace.
rob

[midlifemom]

Chixter,
So sorry you've arrived here so soon. I can't imagine what you're feeling. Kate sounds like a wonderful daughter and I hope she gets to that concert. I'm glad she's deciding how she will spend her time now. Enjoy your time with her. Love to you, Kate, wifey, and all others whose life Kate has touched.

[Voxx66]

I'm so sad to hear this. I hope she has some time left and that she can be pain free. And of course I will give my best incantations for her to be able to see this concert.

[raym]

Sorry the treatment options did not work out and swinging chickens for the concert! I totally understand that she is not giving up, but wants to have good days without the chemo. I have faced and am again facing a similar decision though my cancer is not debilitating at this time.

[Georgie]

Sending all kinds of positivity and strength for the concert to be a success. I hope it is the goal that Katie can aim towards and get to and enjoy. It's not anywhere near the same but I went to an Eddie Vedder concert with a chemo bottle around my neck. I was exhausted but it was worth it.

My thoughts are with you all. It just plain sucks. But I'm glad Katie has made decisions and is coming to terms with it all. Her strength is inspiring. (As is yours as her dad and that of your family and friends.)

And, btw, great work getting the scope done amongst all this. I'm sure that will help Katie too, knowing that you are ok.

Georgie.

[coloradowalt]

I am so sorry to hear this. Swinging chickens, sending positive vibes and praying for your concert plans to work.