Update on Suki and the Plan

[bunny]

Hi everyone. I hope your holiday preparations are joyful. I'm not feeling the Christmas spirit today but hope to have regained it by tomorrow.

We spent a 9 hour day at Sloan yesterday, meeting with mom's oncologist and new radiation oncologist. At the early appointment, Dr. Kris thought she might have a blood clot in her leg and sent her for a doppler (negative) which is is why the day turned into a marathon.

To recap, she has a cluster of small lesions on her cerebellum and one 'spot' on her spine. New information she recieved yesterday is that there is another area of concern on her spine and a another small lesion near her right temple.

The plan is 14 treatments of whole brain radiation over a 3 week period starting next week. They will do SRS on any remaining lesions after the WBR is complete, and will decide what, if anything, to do for the lesions on her spine as her treatment proceeds because right now they can't tell if her left-side weakness is part of her post-op deficits or related to the lesions on her thoracic spine. Some of the treatment plan regarding her spine is also contingent on what they find in a lung CT scheduled for January 12. Assuming she has no disease in other parts of her body, the doctors seem confident that the WBR will serve her well.

In order to make decisions about treatment, Suki pressed for a prognosis. I know how many of us feel about that here, but for her it was important to get an answer to the question, as she puts it, "what will this get me?" In other words, she wanted to know what they hoped to achieve with this treatment plan. I think we were all a little surprised to hear that 6 months to a year of survival is their best hope for her, based on the average response they observe. We all expected something more like 1-2 years. I'm sorry if my posting this upsets anyone here, but I have never kept anything from you guys. Anyway, we know it's just an average and we have every expectation that Suki will, as usual, surprise everyone. So she's going ahead with the WBR and will make additional decisions as they come. Still, it's not an easy thing to hear.

So today I am sad and grumpy. And tired. And weak. Tomorrow I will have a great day doing my very last minute Christmas shopping and giving Suki a beautiful Christmas. We're all bouyed by Levi -- he is joy in a little living, breathing, talking, running and Christmas-tree worshipping package and easily the best thing that ever happened to any of us. Whatever ultimately happens, I derive immeasurable gratitude from the fact that my mother has survived this disease long enough to meet her first grandson.

But today I hate everything, especially lung cancer. I do love all of you, though, and know that your prayers and thoughs have sustained us all these years and continue to do so.

Amie

[SandraL]

Hi Bunny. I am so sorry to read of the update on your dear mom, Suki. Yet you already know you will move on. I just read your signature and you guys have been through so much. So this too you will endure. And based on her past track record, I am sure the treatment will be successful and she will yet again beat those darn statistics. I wish you a xmas full of joy and peace.

Sandra

[shineladysue]

(((Amie))),

I'm so sorry Suki has a new fight ahead and I'm sorry for the heartbreak and sadness that this brings to you all, but I know that you will pull together and make the best of it , one day at a time. I'm praying for the best of results to all treatment and in the meantime my wish for you and yours is a beautiful Christmas.

Hugs,

Sue

[Wendy]

Hi Amie,

I am so sorry to hear about your moms latest fight. Dang it!!

I will keep you both in my prayers.

Wendy

[carolhg]

Praying for strength and that this treatment plan puts her back with NED.

Carol

[Treebywater]

Amie,

That's tough news to take.

I'm so sorry, my friend. I know Suki is going to blow everyone away with her spunk and blow the prognosis out of the water.

But I also know the scariness of those words.

((((Amie))))

[Patkid]

Oh, Honey..............

love

Pat

[Maryanne]

Hi Bunny,

So sorry to hear the news about your mom. Please know that she is in my prayers.

We all know pooey with stasticts.... Knowing Suki she will hang on longer than what they say.

Your son was such a blessing for her and that certainly is something to be thankful for this holiday season.

Thnking of you too... take care my friend and you know we are always here for you

Maryanne

[fillise]

I hope you and Suki had that wonderful Christmas. She is an amazing woman and you know that she is not average so that prognosis is going to be way off (in a good way) for her!

Susan

[Ellen in PA]

Hi Amie.

I am so sorry about your mother's situation. But I understand her point of view perfectly, as it is the same as mine. The 'statistics' question she might want to ask is not how long the average person in her situation can be expected to live but what is the average DIFFERENCE in survival between those who do all the treatments and those who do none. That, after all, is what the treatment can be expected to be 'buying her'. In my case, the difference was under two months. And, for me, submitting to all the misery of chemo and radiation was certainly not worth those extra few weeks. Btw, the average survival for someone in my situation at diagnosis, with treatment, was 8 months. I've had no systemic treatment and passed my one-year mark last week -- and still feel fine. So I'm very pleased with my decision!

Disclaimer: I'm not advocating any course of action, just suggesting what I believe is a very useful question for someone with priorities like mine.

Ellen