Monday, June 1, 2009

the rock and the hard place

Last week was almost a normal week for me. Well, still only half days at work, and then there was that HUGE party/benefit that my friends hosted for me. I knew, before the event, how fabulous my community is, how many friends I have here, how much I am loved and how much I love. But this was a physical manifestation of all this that I have known, in one place, at one time, and it was humbling, and inspiring, and empowering. I can't thank you all enough. I simply cannot find the words.

The timing of the event ended up being perfect, because I was feeling healed enough to be there for hours and to get plenty of hugs and do plenty of talking. And because the sun came out for the first time in a week to shine on us. And because I am faced with another difficult decision, and seeing so many of my friends and family in one place, gathered for me, has given me a little more courage and has made me feel a little more rooted. 

I saw an oncologist at Dana Farber to discuss the next step in treatment. I like to believe that the cancer is gone, never to return, but the reality is that it made its way to one lymph node, and that is enough to set us to wondering if it made it farther. There may be some microscopic cells still lurking, waiting for their chance to grow and make my life hell by damaging something more important than my breast. There is no way for us to know if there are stray cells or not, so more treatment is essential. It is the kind of treatment that is still a bit of a question, at least in my mind.

This doctor is recommending 4 courses of Adriamycin/cytoxan (AC) chemotherapy followed by 5 years of an estrogen blocking drug called Tamoxifen. I have known since I was diagnosed that I would probably be taking the Tamoxifen. The side effects are relatively minor and the gains are likely to be high. As my oncologist put it for me, if no more treatment is given, 20-25 women will have a recurrence out of 100 women like me. With Tamoxifen, 10-12 women would have a recurrence. With chemo and Tamoxifen, 8-10 women would see it return. It has been very important for me to think of it this way, rather than that these percentages apply directly to me. It's a somewhat difficult distinction for me to make, to be honest. But it is an important one. 

She is recommending the chemo because I am young and she believes that the possible side effects of the chemo are worth the potential gain. For some women the Tamoxifen will work, for some the chemo will work, for some it takes both. And we don't know which woman I am. But I am having a really hard time deciding if the possibility that I am one of those 2 to 4 women is big enough to make it worth it for me. While I don't relish the thought of losing my hair or being nauseous for a couple of days every three weeks all summer, it is not the short term side effects that make me hesitate. I can't help but wonder what I will be doing to my body over time by allowing these toxic substances in. Of course, the cancer is potentially far more toxic than the chemo drugs. But will it be for me? Can I get the same benefit by changing my diet or lifestyle?

I will go to Sloan-Kettering in New York this week for a second opinion, and also see a Chinese healer in Portland to hear her recommendation. And luckily I seem to be past the reluctance I was feeling to read any more about cancer. I have multiple books and am studying them all. 

I feel like this is all so dull and boring, and I hope you'll forgive me if you have found that to be so. As with the rest of this cancer experience, I'm pretty sick of thinking about it myself. Unfortunately, I have no choice. But you do, so I am grateful for your attention. And any thoughts that you might have. It is still my intention to move this blog beyond All Cancer All the Time, but it's slower going that I thought it would be. I'll be working on appreciating it as another lesson in patience. 


  1. I wish I could guide you and give you the definitive plan that will give you the best result...unfortunately I can't...the crystal ball dims when confronted with such life altering decisions. My advise is trust yourself, your instincts, your "Patti voice"...that voice that speaks, perhaps not in words, but from that quiet place in your being...all my love...forever...Mom

  2. The comments from your mom really get me, my mom isnt with me anymore but I know with all my heart moms would rather have it be them going thru this than you or I. My mom was still with me when I went thru the diagnosis ect. It was hard to see her hurt for me.. I remember she said not my baby I was 31 but her baby!

    Dont forget I am here.. Dont forget I send my love and good thoughts xoxo

  3. Wanted to let you know your posts are NOT boring - the fact that you are willing to share this experience is so amazing and I'm really thankful Barbara suggested I read your blog. So glad you are able to put these complex feelings and difficult decisions into eloquent prose . I'm out here in cyberland sending healing, loving energy your way. and like your mom, I'm sure your wise "Patti voice" will guide you.

    Louise Tremblay

  4. Patti, I couldn't stop reading your blog. There was nothing boring about it and actually brought me closer to knowing you for all who you are with what I already know of you. It also brought me VERY close to feeling what it is like.I want you to know that if ever you feel alone, that I hope you find comfort in knowing that you are not. I have never felt so close to cancer as I have in reading your words. I had my recent scares but am safe for now. I only hope for healthy healing in you, for you, and wish you as comfortable a process through this as possible. Scary? Yes! Unbeatable? NO! Have that "Patti" strength I know you have and draw strength from all who love you and care for you--especially when you are tired...and heal.

    Take good care
    Love, Heather Nelson-Krausse

  5. i do not find your blog posts to be dull and boring at all! quite the opposite, in fact. i find your writing to be real and your manner to be brave, and i'm glad you're sharing your journey here.