Thursday, May 03, 2007

The Cancer is Spreading . . . and a Decision is Made

Finally, yesterday the radiologist report was in on Monday's CT scan, and I talked with both the surgeon, Dr. M, and the oncologist, Dr. J, about the results. While I'd been waiting for the results, I'd been moving toward some decisions about further chemotherapy. There's a lot of blunt and not-so-easy-to-take information in this posting, so sit down and catch your breath before you start to read.

So, the "okay" news is that the tumor in my abdomen is almost the same size as it was two months ago, which is to say larger than we'd like, and still impinging on my "plumbing" in a number of spots. The "bad" news is that there are signs of metastases to my lungs; they are still small, but they have grown in the last two months, while I've been on this aggressive chemotherapy treatment. That fact, along with the bilirubin and CA 19-9 numbers, suggests that the cancer is doing its thing without being slowed or impacted significantly by the chemotherapy.

The biggest short-term concerns are the areas in my abdomen where the tumor is impacting the function of vital organs. I'm scheduled to have the stent to my bladder replaced next Tuesday (apparently they are good for 3 months, and then need to be replaced). Hopefully, the urologist, Dr. D, can replace the stent with one larger in diameter, to increase the flow from the kidney. The second concern is my bilirubin, which had doubled in a few weeks over the last month. (And Patty reports that I'm glowing a little yellow these days; some days I think I can see it, others I can't.) Dr. J contacted a GI specialist yesterday, who will review my file and see what kind of stent he thinks can be inserted to relieve the back-up of bile. So, I'll have two medical procedures in the next few weeks to take care of my symptoms.

All this week, I have been thinking about my scheduled chemo appointment for Friday, and about being infused again with the two drugs, Gemzar and cisplatin. And my body was revolting. It made me feel sick to imagine putting myself in a situation where I would lose another month of my not-so-long life. Because, that's what I feel about the last month. I haven't been to work in a month, but have had others cover my classes. I have graded papers and made up the final exams, which are being proctored by others on campus. And I will calculate the final grades for students, which are due next Wednesday. But this was not how I wanted the semester to end, nor how I wanted to spend the last month, mostly horizontal and feeling awful. Thinking about all of this, I had decided before talking with the oncologist that I would not do the chemo again.

After encouraging me to try another round, Dr. J suggested that I try to biologic agent, sorafenib. I had looked up the side effects the night before and they looked a lot like the ones I'd already been through; fatigue, hand-foot syndrome, loss of appetite. Dr. J says the side effects have been less intense for patients who have tried this regimen, but I said I need a break. So, we left it there. I'll deal with the medical stuff first.

Dr. M, the surgeon, who has been so forthright and helpful all along in this process, said he understood my decision to forgo further chemotherapy, and that it makes sense to balance quality and quantity of life. He explicitly said that he does not think that receiving additional treatment will extend my life at all, and he also said that, barring some unexpected medical development, he could see me around for another 6 months, give or take 3 either way. I was actually happy to hear a number at this point, since the cancer is on the move, and I wanted an honest assessment of my medical state.

As a result of all of this, Patty has made a call to hospice, to initiate contact with them and see what services they offer and when it might make sense to use them. But don't panic! I feel good today, I'm up and about, and going to have my sparse locks trimmed this afternoon, in the hope that I won't lose much more hair since I'm off the chemo.

Know that I am feeling really good about this decision. Already today, 30 days post the last double infusion, I feel my energy and appetite to be stronger, and my spirits are good because I'm allowing for the possibility that I can have a good quality of life in the time remaining. The chemo simply wasn't allowing for that. If I sound matter of fact about all of this, it's because I'm on the other side of the decision, and not feeling conflicted. I've spent a lot of time and energy processing all of this over the last 10 days, and this feels like the most life-affirming thing I can do right now. For those of you who know me and love me, this may be hard to read, but all I can say is that it feels right. Keep those prayers and good wishes coming! And yes, do balance your knowledge of the new reality with prayers for a miracle. Miracles happen!

16 comments:

Sue Flynn said...

Lynne

Please reflect on "where there is life there is hope".

My prayers continue.

Sue
susanne.v.flynn@marsh.com

Cathy said...

Lynne -

You and Patty and the kids are in my prayers and in my heart. I hope that leaving off the treatments will make you more comfortable so you can really enjoy the birds and flowers.

Grace and peace -

Cathy

linda said...

Dearest Lynne,

You continue to be an inspiration in how you handle all of the ups and downs of this cancer. I am glad you are having a sense of relief from this latest decision, and I hope your quality of life will be much improved very quickly. You, Patty, Lucy and Nathaniel will continue to be held in our thoughts and prayers, and yes, the miracle can happen. Please let us know how we can be of any help.

Much love to you all,
Linda and Jerry

Elbow said...

Hi Lynne-
I'm thinking about you all the time. Your latest post really illustrates in a nutshell the rollercoaster nature of this cruel disease. I find solace in your positive and hopeful words. So does my mom. My offer to babysit still stands. If/When you and Patty need a night out to enjoy all that delicious food together, let me know.

All of my good thoughts and wishes for you and your family-
Liana

Anonymous said...

Lynne,
I'm so sorry to read your medical news, and fully understand your decision about the chemo. I imagine it is a great relief to have the decision behind you. I have been thinking for awhile that all of this decision-making must be exhausting.
You are an inspiration, my friend!
Love and prayers!
Mary M

Anonymous said...

ytutlveLynne,

My prayers for a miracle will continue. I fully understand your decision and support it. I hope you will feel better and be able to enjoy the beauty of this bit of Spring we are having, a great Summer, and beyond.

Whatever you or Patty and the kids need that I can supply feel free to call any time.

Your strength and wisdom are true inspiration.

Sondra

Anonymous said...

lynne- i honor your decision- i also think it makes a lot of sense, especially given what the surgeon told you point blank- it still sucks (i've been saying that a lot lately), but you sound ok to me, at least on the computer- so if you're good with this(or as good as you can be), then i will continue my miracle type prayers and send you electric energy, and hug you whenever i see you-
love, alice

Anonymous said...

beloved, i love you!!! you are joy, spirit, feisty, grace and light.
i was catching up on your posts and your decisions. and i, in every way possible, support your bird watching and being in the life of your home and garden.
i also resonate with your "fed-upness" with cancer claiming every moment of your attention -- and then some.:D

the other night, (some call it dreaming) you and i went traveling to others in the world who needed healing. when i realized it was you with me, i protested that you should be receiving healing. you reminded me that we are whole and perfect in the light of spirit and that is the bottomless reservior of perfect grace.

see you in june. you are always in my heart and i'm blowing kisses on your belly


LOVE LOVE LOVE Paula

Anonymous said...

Goodmorning, Lynne,
I waited until this morning to write....hoping that with the clarity of the sun-filled morning I might be inspired with the right words to support, comfort and lift you. I am still at the keyboard....fingers poised and ready ...mind blank....but...what's new? ha!
Reading your blog yesterday I felt both a sinking feeling and a rush of new life and renewal. I think, as you wrote previously....life..and death...are unpredictable companions to us all and by embracing one, we embrace both. Hopefully without the poisons in your body you will be free to celebrate your life and enjoy those things that make life a wonderful journey.
I am wishing you a better appetite,more energy, lots of sunshine and blue skies, hugs, kisses and laughter...and time....much more time.
Miracles do happen.
Look! You are still with us!
May God continue to hold you in the palm of her hand.
Cori

Sandy said...

Lynne,

There is such strength and conviction in your voice. The decision is clearly heartfelt. Enjoy the beauty of another day of sunshine! The water garden, the birds, the spring bulbs and flowering trees are yours – bask in the sounds, smell, and view!

in peace and love, Sandy

Carrie said...

Dear Lynne,
You and my mother.... :) So much alike in so many ways.

I hope you already know I absolutely support you and all decisions you make. I continue to pray for miracles for you and for Mom. We're seeing a GI specialist this coming monday. The stent will be coming soon I'm sure. Please know that I am sending so much love and hugs and light for healing your way everyday. Every single day.

Thank you for sharing with all of us. It can't be easy, having to write it yourself and be the person in front. That alone amazes me about you. Along with all the other things.

Much Love and Always {{Hugs}}
Carrie

laurie said...

there are tears running down my face right now. i know that you have put everything into this decision and i think i know you well enough to "feel" that you really are at peace with it.

we love you all so much.

laurie

EA Monroe said...

Good afternoon, Lynne.
Thank you for visiting my blog and offering your support to my friend Edie. I am sending the link to your blog to her. She is such an inspiration to me and so are you.

You will be in my positive thoughts and prayers along with Edie and so many others!

Bless you, Lynne!

Anonymous said...

All that I can offer you, I do. Don't forget to ring the bell that still can ring. All my love and prayers are with you. Anything you want, you got it.

Love, Mary F

Sienna said...

G'day Lynne

I just wanted to say what an amazing and inspiring person you are...I also want you to know you and your family will be in my prayers and thoughts...positive vibes from a small little farm in Australia...good karma in dusty places :)

I have made my way over from Liz's, after she wrote a post of her friend's cancer...

I'm glad your energy and appetite are stronger, and I reckon (even from thousands of miles away) your spirit is pretty damn incredible.

Power to you Lynne.

Pam

A Dived Ref said...

Lynne

Thank you for telling your story and inspiring me to continue to tell mine. Through the wonders of global communication you continue to touch people around the world with your story and your wonderful writing.

I am glad to see there are so many around you offering their support and friendship at yet another part of your journey unfolds. Even those of us far away are thinking of you and your prophetic words on your blog and I wish you well as I'm sure all those who have hesitated to comment do.

Thank you for reaching out and touching me, miles away from where you are, and sharing your experiences, it has been a comfort to me and I am certain to many others to realise that, sitting here at our PC screens, we are not alone in how we respond, act and feel about out cancers.

David