Wednesday, July 21, 2010

Heading into the next stage

The beginning of this week has been crowded with doctors' appointments. First, on Monday we met with the oncologist and all agreed that the FOLFOX hasn't helped, and has, in fact, left me worse off. To my immense relief I'm no longer on the FOLFOX or any chemo. We discussed Clinical Trials (as far as I can find out, I'm not eligible for any) and further types of chemo. Dr. Nickerson is against them, partly because they're a third line of defense and likely to be more debilitating and less helpful than what we've done, and partly because much of what's dragging me down now is the blockage between upper and lower GI tract, which wouldn't be helped by a new chemo.

Because of this, we decided it was time for us to call in Hospice. It's a funny feeling. It means that you can no longer hang onto the tiny bit of denial that says, "It's been great so far. Why can't it continue indefinitely?" Indefinitely becomes bounded, though of course it always was.

The Hospice nurse came in yesterday and turned out to be both warm and efficient. We don't need and may never need the full range of services they offer, everything from getting me a hospital bed if and when I need one to Reiki. I'm going for the massages, I think.
It actually feels good to have this in place, like having a guide and well-set-up catering service when you're going on a tour to an unknown place.

The other problem we talked about with Dr. Nickerson was the intestinal blockage and its effects, which are fairly constant nausea, daily vomiting, and regular constipation (if constipation can ever be regular). He recommended a tube into my stomach to drain off what doesn't get through to the intestines, and set us up to see the surgeon, who agreed.

But yesterday we saw the GI doctor who said that he didn't recommend this, that various mechanical problems would make it risky for infection. What he thought should be done is a two-tube solution, with one going into the stomach to drain it, and another going into the intestine below the blockage as a feeding tube. The three doctors (oncologist, surgeon, gastroenterologist) will get together some time in the next few days to decide what's best.

What they won't give me is any kind of formula that balances quality and quantity of time. I find myself looking at their body language and where their eyes go for some kind of hint. Meanwhile we wait.

I wish I weren't writing this. I've read several blogs where people with cancer get to this point and decide to stop blogging. I want to continue as long as I can, though I certainly wouldn't blame anyone who stopped reading because it's not likely to be as upbeat as it's been. But I'm curious. I want to record what this last stage is like and share it with anyone who has ever wondered....

12 comments:

Katie :o) said...

Oh, Lucie! I am glad that you are posting your whole journey. I have loved your fun and upbeat posts. But I also love that you are so honest and REAL. And I sure want to be there with you as much as possible as long as possible. By the way, I miss you very much at band. There is a very big hole in the trombone section. Coffee/not coffee soon! Or just sit and chat and picture Carlson in front of us with his hands down for a while :o) Love ya!

Anonymous said...

Hi Lucie,

I'm in the PC group on Ravelry and just found your blog. I've been reading through it when I have time over the past couple of days, and if you keep blogging, I'm looking forward to reading what you have to say.

Hospice really helped my mother when she died, and then helped my family deal with the aftermath. I'm so glad that it seems like a good fit for you.

- Rachel

Unknown said...

Dear Lucie--I hope you can continue your blog, even though the upbeat part may be done. I do want to be with you as long as possible.
Hospice was very helpful for my brother (esophageal cancer in 2002--he died only 4 months after diagnosis). They sent a social worker to the school to talk with Sarah who was only 17 and couldn't bring herself to meet with them at home. They came to the funeral, and called my other brother and me and our mother regularly while John was sick, and for some months after he died.
I do hope the docs are making you as comfortable as possible. Multiple tubes here and there don't sound very comfortable, but if it's better than the current situation, that's great.

jenny said...

im so sorry that things have gotten so much harder. i continue to think and pray for you daily. i think it takes great courage to document this journey. you have been so honest i'm sure it has and will help others who are dealing with cancer in their lives. we love you!

just Mindy said...

First, I want to thank you for sharing your journey with the world. I don't know you personally but your honesty (in all things) has made your blog and you very dear to me. I hope you will continue to share with all of us. You don't have to try and cheer everyone up all of the time. Just being privileged to follow your life, thoughts and feelings has been enough. Peace be with you and your family and I will pray that you will not be in pain. God bless you and your courage! Mindy

Blue Spruce said...

You definitely want to get rid of that blockage. Having the three doctors come in for a huddle to get rid of blockage reminds me of a football game. Keep trying new things. Our good wishes are all with you and you have many people who are always pulling for you.

Wessenden Woollies said...

Lucie - I have been following you on the PC group on Ravelry and have just started reading your blog. It really is inspirational and I will continue to read it as long as you feel you are able to write.
I hope the surgery goes well and leaves you feeling better than you do now.

Sarah (Womblingstar on Ravelry)

Wessenden Woollies said...
This comment has been removed by the author.
Holly Germer said...

We are thinking of you. Love you.

Margaret said...

I'm with the other commentators...and I would like to add that some time ago I read a study about how important blogging is for cancer patients...

So please keep blogging...whenever you feel like writing, of course...

Anonymous said...

I think I can safely say I'm not the sharpest knife in the drawer after my stem cell transplant but just excelled myself. I wanted to put a comment and whilst thinking was reading through the comments above and had to pop over to Ravelry to see what the PC group was - der! And then I couldn't find it but fortunately found you there and your groups and on discovering what the PC group is confirmed I am still currently as sharp as a sausage.

Wishing you a good quality of life and I'll certainly carry on reading what you blog!

Mean Mama said...

Oh, Lucie--I have been dreading such a post, but want you to know how much I still want to hear what is happening! You are a gifted writer, and have shared with us beyond measure.
Do whatever works for you! love, MM