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



A Big Day…Hell, A Big Week

December 18. Real Time. So today is the day. At 4 o’clock this afternoon, I finally get my long-awaited audience with Dr. Rugo. I’m anxious. I spend my time imagining the conversations. The debates. What she thinks I should do as opposed to what I’m willing to do. I remind myself that Dr. Rugo is practicing medicine. Practicing. She will strongly recommend a course of treatment based on the success she has had practicing on other patients. But I’m not other patients. I’m me. I’ve been practiced on before. I know that 19 years ago, every decision I made about my cancer treatment was based on fear. The fear of dying sooner than later. They tell you the mortality rate of having treatment vs. not having treatment. And it scares you. So you say yes to radiation. You say yes to chemotherapy. You say yes to whatever they feed you that they say will help you live longer. But I was 47 years young then. Life was good, really good…except for one small, life-threatening thing. I wanted to live. So I did whatever they told me I should do.

I’m not 47 anymore. I’m not afraid anymore. I want to live, of course. But I’ve been told my situation is not dire. And this is what I imagine I will be reminding Dr. Rugo. After all, how dire can it be when she has waited three months to even see me? What guarantee can she give me that chemotherapy (which would take 4 months to complete) will shrink the tumor? Here is what I want. I want to get surgery scheduled as soon as possible to have the tumors removed and have the conversation about adjuvant therapy afterward. That’s it. So on this BIG day I’ve been anticipating for 3 long months, I’m going to pull on my combat boots and my flak jacket and head out the door to my future. My future. More to follow…

As for my BIG week. This is my last week as a working class stiff. I’m retiring. Officially my last day is 12/31/18. But I work for a college, and the college is closed the last week of the month for winter break. That means after Friday all I have to survive is the holidays. Well, not just the holidays, but you know what I mean. To the future. May it be brighter and happier than we could ever imagine.

The way is not in the sky. The way is in the heart. —Buddha

It’s a large lymph node

November 30. My appointment with Dr. Ewing was at 9:00 a.m. I was told to arrive 15 minutes early for the usual doctor appointment reasons…insurance cards, sign off on the privacy policy, blah, blah, blah. June went with me this time since Steve had an appointment of his own. She was in charge of audio-recording our conversations, and she had a list of questions from Steve (of course).

Dr. Ewing had an unexpected something, and was running late. So for the first 45 minutes or so we met with members of Dr. Ewing’s team — Doctor Rothman (a fellow at UCSF) and a male medical student (sorry, I don’t recall his name). They asked me a lot of questions about my previous cancer and how I found the current cancer. They took turns feeling my tumors. 

Finally, Dr. Ewing arrived and we got down to business. She examined my tumors, and said that the main one might just be a large lymph node. Really? I didn’t know there were lymph nodes in that area. She wanted to know if I’d had an MRI. No, I said. Not an MRI. She said the MRI would give her an accurate map of what is going on. June gave her the list of questions and Ewing immediately said I did not qualify for any of the studies. She said it was obvious I would need some sort of chemotherapy to shrink the tumor before any surgery. No, I told her. I’m not doing chemotherapy. I’d had it 19 years ago and it damn near killed me. The look of disbelief on her face clearly expressed her reaction to my response. She said that if it was a triple-negative tumor, as she suspected, they do not respond to anything (did she mean anything except chemo?). She went onto describe a horrific outcome without chemo and surgery. I told her I’d rather die from cancer than from chemotherapy. The MRI, she said, will tell her if surgery is possible. It was about then that we were told my MRI was scheduled for 11:30 a.m. And that I would have a fine needle aspiration (FNA) of the node under my arm later that afternoon. We all agreed that was great news. Ewing is also going to have a conversation with Dr. Rugo and will try to get her to see me today, if only briefly. That would be great, even though I’m sure she would just try to talk me into chemo, but at least I could ask her about other options to shrink the tumor if it isn’t operable.

The MRI took about 45 minutes. Before the procedure, they sent me for a blood draw. Then June and I had time for a coffee (Chai latte for her and a green tea latte for me) before heading across the street to the MRI lab on Post. 

The lab was running a little behind, but they went ahead and had me change out of my clothes into hospital gowns (one open to the front and one open to the back), hospital pants (ginormous one size fits all with a drawstring tie that still didn’t keep them up) and hospital socks. I filled out forms assuring them I had no metal in any part of my anatomy except the metal marker from my first lumpectomy. They told me the marker was titanium so no problem. They also put an IV in my arm for the contrast media they were going to use. I’d only had one MRI before and that was on my foot (no contrast media) and it wasn’t that big of a deal. I was feeling a little apprehensive about my whole body being inside that ominous machine. Surprisingly they had me lay face down, so my tiny bit of anxiety about feeling claustrophobic disappeared. The technician did let me know that the contrast media might make me feel nauseous, but usually that feeling passes without incident. Suddenly I was wishing I had not had that green tea almond milk latte. Ewww. Good news. I never did feel anything other than a cold rush moving up my arm when it was injected. Sometimes it’s the little things that make us most grateful. Once the procedure was over, June and I went back to Dr. Ewing’s office. 

The results were good. The tumor is a large lymph node that is lying under the muscle. The cancer is not in the muscle tissue. Dr. Ewing said she would do surgery with or without chemotherapy (in my mind I’m doing a happy dance). She did say that surgery would be tricky either way because that is where  major vessels and nerves come into the arm. Of course they are, I say, and we all share a nervous laugh. She leaves the room to see if Dr. Rugo might have a few minutes to see me. She is still with another patient, so Dr. Ewing sends me over to get the FNA. It was completely painless and the doctor who did it was able to let me know right then that there were cancer cells in the aspiration. As expected. Any other outcome would have been an unbelievable surprise. 

We headed back to Dr. Ewing’s office and waited to see Dr. Rugo. After about an hour, Dr. Ewing poked her head in and said Dr. Rugo was still with another patient. So we kept waiting. And waiting. And waiting. Finally Dr. Ewing let us know that she had to leave, but Dr. Rugo was still hoping to see me. So we waited. After awhile Dr. Rugo’s assistant came in to let us know that she still had 3 other patients to see before she could see me. I start doing the math and realized it could be 8 o’clock before we ever see her. It’s 4:30 p.m. and we have not eaten since 7 that morning AND we still had a 3-hour drive ahead. June was willing to do whatever I wanted. I was exhausted and hungry and I knew June was, too. I decided that we needed to go have dinner and then go home. He said Dr. Rugo was gone all next week. I told him I would see Rugo on the 18th as scheduled, unless she could see me sooner. To just let me know if anything changed. He understood and said he would let her know.

The bottom line.  It was a good day at UCSF. I finally feel a bit of forward momentum. I’m relieved the cancer is not in my muscle. That it is likely encapsulated in the lymph nodes. I like Dr. Ewing. I trust her. I feel safe with her. We got off to a little bit of a rocky start, but I expect to move forward with surgery, hopefully before the end of the month. 

We all live in suspense, from day to day, from hour to hour; in other words, we are the hero of our own story. —Mary McCarthy