Monday, April 27, 2015

The Circle of Life

April brings spring and new beginnings. The daffodils and snowdrops are flowering. It is the time of the year when I was born. It also now signals to me that I may have had my last good year. My oncologist has started to talk about months rather than years left. My circle of life is closing too quickly.

Those of you who follow me on Twitter will know that I washed out of the Vaccine trial. My scan at 12 weeks showed a small amount of progression in my liver. My bones were quite stable and have been for the last two scans but it’s my liver that has my oncologist jumping up and down. It was not as though the immunization did not work, it just did not work well enough. So now I am on chemo. I have started taking 1000mg of Xeloda twice a day for two weeks and then one week off. I tried to get on a clinical trial with it, but I did not qualify. My C-Reactive Protein was not high enough.

I was diagnosed with infiltrating ductal breast cancer, Stage III, 10 years ago. Almost exactly eight years later, I was diagnosed with Stage IV, terminal cancer. The median survival with Stage IV is three years. I have had two.

After my first diagnosis, I kept asking why. I was not feeling sorry for myself but looking for reasons. I opened up cupboards and emptied them into garbage cans. Everything had to go. I replaced everything from pots to hand lotions. I was on a mad mission to eradicate every imaginable carcinogen and I did not stop until my imagination was exhausted.

After my purge, I bargained and begged. My daughter was only 13. I needed another five years. I needed to live until she was 18. The oncologist made no promises but I did. I promised to do everything I could to say alive.

I had chemo and vomited for six straight hours. Night after night, I lay huddled on the bathroom floor, too sick and exhausted to go back to bed. In the mornings, I dragged myself up to see to my family and exercise when I thought I could not move. But without fail, I presented myself at the infusion center two weeks later to be pounded into the submission of the bathroom floor. I lost my hair and my dignity. I developed allergies to dairy and anti-cholinergics so Benadryl sent me to the emergency room. I went from surgery to chemo to radiation to drugs that control estrogen. Whatever was thrown at me, I had to suck it up. The cost was the cost.

My daughter turned 18, then 19, 20, and 21. I dared to wish for more. I was there when my children graduated from college. Could I make it to their weddings? I was hopeful. But it was not to be. Finally my Faustian bargain expired. It was time to pay the piper. 

Unless there is something that works for me soon, I will never be the mother-of-the-bride (or groom) and I will never hold a grandchild.

What do you do when you have been told the chips are down and this is your last hand? How do you play it? Do you try to live as you always have or cram the end with a dizzying pile of activities and memories for those you love? Each day we have to balance our energy and health with things to be done. Each day is a set of priorities that can change in a moment. Some days I get most things done but other times I fall dismally short.

I can’t take things for granted any more. Opening the freezer and pulling out the frozen corn causes me to unleash a string of expletives that gets my husband running and waving his arms shouting, “I’ll get it! I’ll get it” as frozen vegetables hit the floor and I hop around holding my burning hands. Damn chemo.

When I die, I will be missed by some but my death will largely be unreported. I did not do anything great and my name will not be in any history books. I’m an ordinary person. I am dying because of the lack of research to find a cure.

I leave three requests:

1) Take care of my family
2) Don’t ever donate to Susan G Komen or buy anything pink in my name and
3) Just say I died or became late. I did not lose a battle.


  1. Your voice is kind, loving, thoughtful and intelligent. I respect you fully, and love you from afar. In 2013 it was thought I may only have months... I hope, with you, that your current chemo treatments will give you a lot more time with your family. Should you die before I do, this small voice will respect your third request, and I will miss you very much. xoxo

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  3. Your family is very important to you as mine is to me
    Do whatever gives you joy, everything else is just stuff. I saw a photo on FB of a dog running with ears flying and all paws off the ground. The caption read "live life like someone left the gate open.". I wish this for you. I haven't been following you long but I feel a kinship to you and others on this fight.
    When you decide this part of your fight is over I wish you peace. As for me I hate pink. You are not losing the fight, you're just passing the baton on to the next one in line. This is not a " race for a cure." It's a relay. XOXO

  4. This brings tears to my eyes. I hope beyond hope that Xeloda works for a very long time and that you can find a better trial. We need more than three years. We need a cure. *hugs*

  5. No. I'm sorry but I refuse to accept this. I know you trust your Dr but you should get a second and third opinion. There has to be something out there. I've already emailed some Dr.s at Stanford for someone else and if and when I hear back I will put you in touch with them as well. No, not accepting months rather than years.

  6. Did Google eat my first comment?

    Your post has affected me deeply as I have a twelve year old daughter and have already been at stage IV for four and a half years. May your doctor be wrong. May you be well. May you live all the days of your life.

    ~ Kate, of Kate Has Cancer

  7. Such a powerful voice you have. I have no adequate words. Sending love and hoping you get more time. xx