The Colon Club

Hi Friends,

I'm an old timer but haven't been actively posting for a while but I visit & read the board often. I can't believe it's almost been 6 years since Blake's stage IV diagnosis and 4-years since his recurrence. At the time of his diagnosis, the 5-year survival was 8% which he has clearly surpassed. Then, when he had his recurrence, we were told 18 -24 months and that was 4 years ago. I honestly believe that he continued to do so well because he continued to work full time. Even during active treatment, he would wear the 5FU chemo-pack to work!

Now, after 80+/- chemo treatments, Blake has decided he's done. A good friend told me that she won't die with "chemo in her veins" and that's Blake's choice as well. The tumors have now made their way to his lungs and are "too many to count" they are also in his peritoneum, 6th rib, pelvis & possibly esophagus. Although Erbitux is an option Blake isn't interested in receiving it. He was told it improved survival by 50%; ie: improving 6 months to 9 months. To Blake, 3 extra months is not worth sacrificing his quality of life. It's his choice and I completely respect it. It's important to know that Blake hasn't given up life, he's choosing to LIVE without the interruption of Dr. appts, scans & chemo. He's lost 70 lbs but if you saw him right now you would have no idea he was sick. Luckily, he had it to lose

Although nobody can predict, our (wonderful) Onc thinks he's looking at 2-4 months. I've been told his pain will increase substantially and will be our biggest battle. Although he wears 150 mcg/48 hours Fentanyl patch as well as 5mg 2x daily Methadone for pain, he's had to take Oxycodone for breakthrough pain tonight.

We'll meet with Hospice next week and also try to get in to make funeral arrangements. It will be nice to get these things taken care of with his input. I feel somewhat prepared as I have received a wealth of knowledge thanks to this board and our wonderful cancer team and I'm grateful for that. For me, knowing what's coming our way helps me cope but I don't think you're ever ready.

So, that's our update. I hope it's inspiring and not depressing. Blake has lived a very good life since diagnosis; this has not been a death sentence but a reminder to enjoy life & not sweat the small stuff.

Take care everyone!

Kathy

I'm so proud of you both for how you're handling this decision. Only someone who has gone through as much as you have can truly understand when enough is enough. I applaud you and am praying for you.

As much as I hated reading this, I know what a true inspiration you two have been. I love that Blake has messed with the stats, and it wouldn't surprise me if he does it again. We've talked, so you know how I feel about the end of the journey - and I'm so glad you guys are calling the shots. I hate that after you two found each other, that growing old together is no longer on the table. You've made some incredible memories together...and have months to make a few more. Hugs and love to both of you. -Ashlee

It is inspiring, touching and also sad post, but I admire your atitude, you will to surpase circumstances, made your choices and find a piece of mind in these months ahead. I will pray for you, pray for miracle, for more time than predicted, less pain........

Kathy,
You are such a wonderful wife and I love how you respect Blake and his decision to stop treatment. I pray Blake's journey will be filled with many good days and my hope is that his pain will be under control. I'm thinking of you Kathy as you go forward with Blake.

Aloha,
Kathleen

Your post was so inspirational. Such strength you two have. I also pray for less pain than predicted and more time than predicted. I pray for more strength for you because I can't imagine watching helplessly as the end comes and ther is nothing you can do except wait. Hugs and prayers for you both.

Although I am sad for both Blake and yourself, I am glad that he is capable and able to make decisions for himself and is choosing that it is time to stop. I am totally in favour of the 'not dying with chemo in veins' mentality. I hope you can get all the paperwork and other arrangements sorted out and can enjoy your time together. You and your family will remain in my thoughts.

Georgie

Kathy, standing with you, honoring and loving you both. Praying for peace and comfort for Blake and you.

xox

Bev

That was an inspiring post. Thank you.

Thanks so very much for this post. It helps immeasurably. I hope my wife can see the wisdom in doing this and not fighting so hard to the end that she remains frustrated and in pain. Last night she had a well deserved, long overdue meltdown fueled by a long work day, steroids and a persistent cough. In the last few weeks, I've come to understand more easily how some patients get to the "enough" point and I so respect it.

Best, Concerned Relative

Thank you for your post, Kathy. Reading of your and Blake's strength gives me some to put in the bank for when I need it.

I second what an earlier person said: I hope Blake messes with the stats one more time!

Blake's courage and spirit shine in this post, as does your own. Thank you for sharing this news with us. It's part of the process most of us will have to address at some point, and it truly helps to hear how others are handling it. Peace to you both. Ann Alexandria

Dear Kathy,
That was a sad but inspiring update, you and Blake have a very special relationship your love shines through, thank you for sharing this with us.
Sending my thoughts and love across the globe to you both.
Take care,
Barbara x

My thoughts and prayers are with you on a painless journey .

Mark

Kathy,
I so get his decision and am praying for you both - for comfort, mercy and laughter during this next stage. It's evident that y'all have LOTS of love!

God bless ~
Guinevere