Exquisitely sensitive

December 18…the rest of the story. When I was first diagnosed in September, my dear friend Katie gave me a necklace. It is a thin silver chain with a small silver disk hanging from it stamped with a single word, COURAGE. I immediately put it on, and I wear it every day. It serves as an affirmation that every waking hour of my life now requires courage. Courage to stay strong. Courage to not eat unhealthy food…99% of the time. Courage to be poked, prodded and tested. Courage to speak my truth. Courage to listen to someone else’s truth and consider their point of view. Courage to reconsider my stance, my core beliefs about what I will and will not do and open myself up to the big picture.

The meeting with Dr. Rugo was irritating, sobering, and, in the end, just plain upsetting. First off, my appointment was at 4p and Rugo finally came into the examining room at around 620p. She apologized for our long wait…sort of. I wasn’t feeling the love.

We then went through my entire life’s medical history which she keyed into my record herself (control freak?). When we finally got to present day and all my test results, she immediately began talking about the type of chemo she was recommending (12 weekly infusions of Taxol {covered by insurance} or Abraxane {if Taxol is not well tolerated, not immediately covered by insurance} with low dose Carboplatin) and that she would want to start next week. It was then that we began an exchange about why she wanted me to do chemo, and why I was determined not to. She said, as they all do, that chemo has changed in the 19 years since my last infusion. It is more customized and is developed from natural products that are now made synthetically. She referred to it as metronomic chemotherapy. I said poison is poison. I told her I did not want chemotherapy, that Dr. Ewing had said she would do surgery with or without it. That surprised her. She was under the impression Ewing would not do the surgery without it. I reassured her that Ewing had told me she would. I reminded her that 4 months had passed since my diagnosis and I just want it out as soon as possible. I need to make some forward progress.

This is when she took out a little piece of notepaper and started writing things down to give me:

• 2 cm chest wall mass
  axillary node
• “Triple negative” – High grade triple negative invasive ductal cancer
• ER – negative (estrogen receptor)
  PR – negative (progesterone receptor)
  HER2 – negative (hormone receptor)
• Stage II

She tells me this type of cancer is often more rapidly growing. That only 15% of all breast cancers are triple negative, so development of additional therapies is unmet. That all the new therapies…immunotherapy, etc….are for the other 85% of cancers. My only choices are chemo and/or surgery. That untreated, the metastatic survival rate is 2 years. It is likely that since it is in two lymph nodes the cancer has sent out scouts, and it will likely reoccur. It is a nasty cancer.

She gently urges me to consider trying the chemo, that we will know after three treatments if it is working for me or not because this type of cancer is “exquisitely chemotherapy sensitive.” That the treatment can melt away and often completely dissolve the tumors. That the success rate and the chance of it not returning is in the high 90 percentile for those who have the chemo. That with metronomic chemotherapy we will see results in three weeks, and if there is no change the treatment would stop. She tells me she will test the block of needle biopsy tissue that remains to confirm that it is triple negative. I say, “Measure twice, cut once?” We laugh a little.

I don’t say yes, but I don’t say no. I tell her I need time to think about it. To do research. To consider what she has said. I tell her it is counter to everything I know to be true about myself and what I believe about this type of treatment. I tell her I will give her a decision by Thursday.

It is a very quiet, somber 3-hour drive home.

Normal day, let me be aware of the treasure you are. —Mary Jean Irion

December 19. I wake up at 3:00 a.m. and all I can do is cry. I send a message to Dr. Ewing letting her know I’ve seen Dr. Rugo and would she please tell me the risks of having the surgery with or without chemo. I’ve agreed to consider it and have until Thursday to make a decision.

Now I am sobbing. I just can’t help it, and I’m not sure why I’m so distraught. Is it because I feel backed into a corner and chemo might be the best way out? Is it out of frustration that there aren’t more options? Or am I simply crying because I don’t know what else to do? I decide to look up the common side effects of Taxol and Carboplatin, and they suck. Low blood counts, hair loss, numbing and tingling in hands and feet, nausea, diarrhea, mouth sores, weakness, and blood abnormalities. It’s hard for me to see the progress in chemo they say has taken place in the last 19 years, certainly side effects haven’t improved. The tears continue to flow. I’m a mess. I send a text to Katie to let her know I’ll be late for work. She tells me to stay home. Good idea.

I email June and ask her to do a little research on Taxol and Carboplatin. I tell her the gist of my situation, and wait to hear back. I ask Steve what he thinks I should do? He says it’s my decision. I prod him to tell me his truth. He confesses that if it were his decision he would have me at least try it. After all, it could melt the tumors and they could disappear.   Later, when I hear back from June she lets me know she has talked with her daughter (a surgical nurse) and the recommendation is that, in spite of the horrible side effects, I should at least try it knowing I can quit at any time. I’m sobbing again. That’s how the rest of my day goes. I’m sad and I’m struggling.

The best way out is always through. —Robert Frost

December 20. I go to work. And on the drive there, it finally dawns on me why I am so grief-stricken. When I had chemo 19 years ago the poisons in that cocktail changed me forever. Not all my hair fell out (none of it was supposed to) and the hair that came back in its place was not the hair I had known for 47 years. My hair had always been super straight, now it was wavy and flippy and a bit wiry. The first treatment had put me in chemically induced menopause which affected my libido and other things uniquely female, and not in a good way. My skin changed…some premature aging that shocked me to be honest. I still miss the person I was before chemo. I grieve for the loss of her. Now I realize I am grieving for the me I will lose if I do chemo again. Because that’s what chemo does. It changes you forever. You sacrifice bits and pieces of the physical you that you are now. I am in mourning, and it hurts me in a deeply primal way.

By mid-morning I still haven’t heard from Ewing, so I send another message to make sure she got my first one. Later in the day her nurse sends me a message letting me know Dr. Ewing will call me later that evening. Good.

When Ewing calls I ask her what the risks are of not having chemo before surgery. She says that the surgery is delicate because the node under the muscle is relatively big and is located near the brachial plexus  and blood vessels and the chest wall itself. She says this chemo would likely make the tumors disappear, and that I would be surprised how well it works. I ask if I would still need surgery if they did disappear, and she said yes. She would need to go in to get any remnants that might be left, but it would be a much easier surgery for her and me. She was reassuring. Comforting. I like Dr. Ewing.

I hung up the phone, looked at Steve and said, “This is the hardest decision I’ve ever had to make. I’ve weighed the pros and cons. I’ve done my research. I’ve listened to the counsel of doctors, friends and family. It is counter to every stance I have taken. But, I’m going to message Dr. Rugo that I will try the chemo.”

All you have to do is look straight and see the road. And when you see it, don’t sit looking at it—walk. —Ayn Rand, We The Living