April 20, 2009, Beginning the End

Monday.I walk back into the oncology waiting room beaming at my husband. "I'm done!" After 10 months, it seems somehow strange to have reached the end of treatment. This long hard journey has come to an end. How different the world looks on this side of the mountain. No doubt I will spend the next 10 months recalling the ups and downs of this path, what I have learned about life, what I have learned about God.

The skin across my chest is bright red and feels sore and tight like the Jamaican sunburn I was promised. We had a lovely week-end, staying once again at a friend's home where our daughter and son-in-law joined us. It was a great time to begin to put this year behind us and look to the future and the myriad of wonderful possibilities of life.

Last Thursday.
I see Dr. Kato for blood work and find out the next step - which little daily pill I will spend the next five years on. He prescribes Femara, an 'aromatase inhibitor' used to prevent the absorption of estrogen by cancer cells. He gives me a one month supply, $300 worth. He has seemed overworked and distracted the last few visits. He says my blood work is perfect and dismissively tells me to come back in a month. I don't leave so easily. I have a question. I ask if he recommends anything to deal with the bone loss caused by Femara such as an infusion like Boniva(the one Sally Fields advertises). He nods his head and says "Yes, that's a good idea." When I see him next month he'll give me Zometa by IV.

"Sure glad I came up with that idea," I say to Shoyei as we drive away. I've heard I have to be my "own advocate" but my own doctor too? It depresses me to lose confidence in Dr. Kato. On the way home I wonder aloud why he hasn't recommended a bone density test before I get started. I determine to find out tomorrow.

Friday

I call Dr. Kato's office. "I was just wondering if Dr. Kato thinks I should have a bone density test before I start on the Femara?" I ask his receptionist. She checks and calls me back, he said: Yes, I should have a bone density test, he'll have someone call me to schedule it. Wow! I'm full of good ideas and I barely got Cs in science! I am feeling very unprotected by my doctor.

Later that day I see Dr. Kuske for my last weekly check-up to see how I am faring with the burn and fatigue and all. My husband joins us. Dr. Kuske spends our entire visit on his Blackberry. He says he's waiting for a call from a doctor but then gets a text from a different doctor. Dr. Kato is "asking whether I can see a patient at 6:15! On Friday night! We have theater tickets!" he states in mock outrage. We nod our heads in sympathy at this unrealistic request. I glance at my husband's bemused expression watching the doctor as his thumbs fly over the keyboard in response. He absently asks how my skin is doing and as I answer he is staring at his vibrating PDA and reading another message. "Oh good. It can wait til Monday." He holds up the screen waiving it for my husband and me to read like show and tell in front of a class of grade school children. He then returns to his texting and, with eyes on his thumb work, tells me what I can expect as far as my skin healing. We leave feeling udderly neglected, pun intended. Totally let down by the experts.

We take the week-end to get over it and don't even speak of it until the next night when our collective shock is wearing off and the retelling of it solidifies our right to be outraged. Our mission is clear. We will become expert advocates. I wonder sadly about those who are too ill or too frail to be advocates for themselves.

So it is over. The biopsy- the port implant- the chemo - the burned hands - the mastectomy - more chemo - Neulasta - bone pain -expander rejection - port removal and radiation. It is all over. The calls of concern, the prayers for healing, the doting care of my husband, the meals, the cards, the flowers and gifts, the host of new friends - these are over too but they are the vestiges of cancer I will cherish. That is why, when asked about my journey, I get a wistful smile and think on how loved and cared for I have felt by my wealth of friends and family. I am glad I walked this path. Even when I was alone, I was never "alone". Even when it was hard, it was never more than I could bear for others bore it with me.

Now I face the trial of not fixating on every ache and pain and wondering if it's back. Yet I know that even if it comes back, it will be less frightening. So many women have touched my life over these many weeks. It's amazing what two women can share in ten minutes. We exchange emails, each of us a bit desperate for more time to share, making ten-minute friends as we sit knee to knee, braless and gowned. The last new friend I make is Gerri, a beautiful woman with clear blue eyes and thick white hair which she wears in a graceful pageboy. She is on her second bout of breast cancer. Her sweetness and peace inspire me. We speak fast and excitedly sharing our lives, knowing the time is brief between patients. We share our love for Jesus and rejoice for each other. We squeeze hands and hug as if we've known each other all our lives. It's a fitting end to my experience and I leave the same way I entered, smiling, with joy in my heart, with peace in my soul. A new beginning.