A Kick-Ass Fairy: A Memoir (15 page)

I went home, drafted, typed, and sent the following letter:

February 3, 1996

Dr. M.

Dr. S.

Dr. P.

Dear Doctors:

I understand that my case is being re-presented at the Hospital Tumor Board due to the conclusion and hopefully successful treatment of the latest complication, my infected left breast. I applaud this step since I think everyone needs to step back and reflect on what happened here. I am writing this so that an important opportunity is not missed at this tumor board.

While I’m sure you will earnestly debate what came first, the chicken or the egg—was it radiation recall from chemotherapy, radiation mastitis, the implant, etc.—what this patient thinks is important is that you step out of your respective specialties and focus on what is important: the patient, the whole patient, and that you need to LISTEN to the patient, treat the symptoms but find the cause!

This ordeal has been hellacious and required much effort and energy on my part. Since mid-December, I have been complaining of inflammation, redness, excessive tenderness, and at times severe pain, and have been febrile on and off for almost six weeks. I have asked for a team quarterback and asked you to do research to determine why this was happening. I presented my own research and even said that my breast felt like it was infected. Could you imagine anyone being more proactive? The symptoms were treated by two rounds of steroids and painkillers.

Perhaps this was appropriate given the original culture result. It is not my job to second-guess all of my hired professionals. Someone needed to focus and get out of the rut of “was it the implant or the radiation?” Who cares! The “bottom line” was the patient wasn’t getting better.

We have a saying in business, which I’m sure you’ve all heard: “K. I. S. S.” or “keep it simple, stupid.” I think you needed to focus here on being doctors first, specialists second, and even though my case seemed complicated, was it? In hindsight, it really wasn’t. It was a simple infection. I also think you should remember symptoms are a manifestation of a causal problem. When a problem seems too complicated, I suggest you K. I. S. S.! In my opinion, this lesson is the real opportunity of the tumor board.

At my company I require excellence in the 40 or so accounting and finance professionals that report to me. I expect no less from my health care team. In order to feel comfortable with my health care team going forward, I am requiring that you listen to me. I will also be asking for explanation and support to my satisfaction for all treatments and procedures going forward, as well as copies of everything. If any of you are not comfortable with this, you’ll need to let me know immediately so that my treatment is uninterrupted.

Let’s get this team moving forward to get me well. Happy debate!

Sincerely, the manager of this health care team,

Linda M. Zercoe

cc: Dr. Donald

I did not expect any response, but I got two. One was from Dr. Donald, whom I had copied as a courtesy. He very kindly stated that he would “be happy to be a backstop. I’m not a quarterback, but hopefully a safety.” The other letter I received was from the radiation oncologist acknowledging my request for communication and explanation for procedures, from which I concluded that he obviously missed the point of my letter or wasn’t going to refer to it in any other way.

I returned to my group at the Wellness Community. I had so much to talk about—the trauma of two emergency surgeries, the fear, the abandonment, the frustration of nobody listening to me, the multiple doctor failure, my dream and my spiritual rescue. The word lawsuit circulated the room, reminding me of the mob’s reaction when Pontius Pilate asked what to do with Jesus, proclaiming in unison, “Crucify him!”

I did give the idea of a lawsuit some time to roll around my head, but all I could think of was my therapist asking “So, tell me, how will this help in your recovery?” Besides, I thought, where would I find the time or energy to put together another medical team? Also, since the treatments were almost over, I could soon move on with my life. I knew without a doubt I would have had no hesitation in suing if my oncologist had not sincerely apologized to me once the infection was confirmed. So did I forgive them, or was I just too shell shocked, beaten up, stupid? Who knows?

I believed in my heart that these doctors were all good, honest people who really tried to do their best. In some strange way, I thought of them as victims as well. They were victims of a horrible insurance system where, at that time, they would receive maybe $45 per visit including the patient’s co-pay. I knew that the economics of managed care unfortunately forced them to see an excessive number of patients just to break even. How would they have had the time to focus on anyone, except on a crisis-management basis? I thought of my oncologist’s shoe.

My antibiotic treatment finally concluded after about a month. The pain was gone. The drains had been removed and the opening at the bottom of my breast was healing. When Doug and I went for the follow-up appointment with the new plastic surgeon, we discovered that his wife had recently died of breast cancer.

He was unhappy that my removed implant had not been placed beneath the pectoral muscle. “Breast cancer is too risky,” he said, “and implants obscure the detection of a tumor, through both radiological means and by palpation.”

That was not the case with me, since fortunately I’d found the lump anyway—although now I knew exactly where he was coming from. He recommended that I have another mastectomy; he considered breasts just troublesome “sweat glands.” He also said that any reconstruction would be difficult since my skin had been so damaged from the infection and the short-lived radiation. Doug and I thanked him for his help and walked out of his office looking at each other with All righty, then! written on our faces. Did we just hear I now needed another mastectomy?

Well, I’m sure I couldn’t even fathom the thought. Doug, tearful, turned to me, looked me in the eyes and said, “Poor honey.” He took my hand and told me confidently, “Don’t worry. We’ll get through this as well.”

Chapter 13

February–May 1996

N
ear the end of February, after spending more than two months in the underworld, I returned to work. My chemotherapy continued, and my hair started growing back in patches—though not enough to stop wearing a wig.

Things at work were really changing fast. I found myself completely out of the loop. My department, as well as the entire accounting/finance function of the company, was embarking on a “reengineering” project, complete with outside, objective, and very enthusiastic consultants who would be sure to come up with dramatic recommendations and changes that were guaranteed to be commensurate with their desired fees. Seeing the writing on the wall, my boss decided that she was going to fulfill a lifelong wish to live and work in France and would be leaving within the next few months. Ever faithful to me, she was recommending me for her job. I felt honored, but many mountains needed to be scaled before we would even know if that job still existed.

At the end of the month, Doug and I went to a cocktail reception hosted by his company. This was the first time any of his associates had seen me since my second cancer diagnosis. We made our way around the hotel ballroom—me, complete with wig and a smiling mask. Not one person mentioned our ordeal or my illness, or asked how I was doing. I felt like the proverbial elephant in the room.

“You look great,” many of Doug’s colleagues insisted. Get real, I thought.

What did I expect? Maybe no one cared, but more likely either seeing me just made them feel too uncomfortable or they thought if they mentioned anything I would get upset. Once again, I felt like a leper—but then I immediately told myself, Stop feeling sorry for yourself and Get over it. By now, I was used to having complete conversations with myself. I, at least, listened to me.

At the end of the month, the tumor board met to discuss my case. Interestingly, only one member of my “team” attended—the radiation oncologist. The board’s recommendations were that there should be no further radiation and I should either have another mastectomy or do nothing but maintain close surveillance. The latter course was considered difficult since the breast tissue had become firm from all the damage. This was yet another blow, but I tried to bring it into perspective—at least I was alive. I was absolutely not looking forward to another surgery. This would make the eighth trip under the knife in less than three years. However, I couldn’t have the surgery until after the chemo was over and my immune system had a chance to recover. Figuring that would be sometime during the summer, I decided I would worry about it then.

In early March I discovered yet another—enormous—lump, in my left armpit. This area had been swollen after the axillary node dissection and hurt, along with everything else, when I had the breast infection. But now that the swelling had subsided, there it was. I met with my breast surgeon pronto. She was very concerned, so much so that she personally escorted me to radiology, where I had an emergency ultrasound.

The ultrasound found a solid, probably malignant tumor roughly one inch in diameter by a half inch thick that had not shown up in previous mammograms and ultrasounds. Surgical evaluation was recommended, and of course my surgeon would be happy to do it. Around this same time, I was told that I had a nodule in my right lung. I was also feeling pain in my left lower rib cage. This was all getting to be too much. It was crisis all the time. I thought, When does it end? Then as if someone was whispering in my ear, I heard, Shhh, it ends when you are dead. How’s that for perspective!

I refused to respond reactively to these latest developments. Of course the surgeon wanted to do surgery—that’s what surgeons do. I took a few steps back and tried to look at the big picture. OK, I thought, what do we know?

1. I’d just had a huge breast infection and a bout of bronchitis/pneumonia.

2. I was distrusting of my doctors after the recent debacle.

3. I was facing another mastectomy. How many more surgeries can you have before your brain turns to a puddle of mush?

By now, my medical history was anything but normal.

I concluded that I should seek another opinion, outside of this medical group, about how to proceed.

I arranged to consult with the comprehensive breast clinics of two extremely reputable university medical centers, Stanford and University of California at San Francisco. Preparing for these visits was no easy feat. Each facility required multiple copies of films, reports, pathology slides, lab reports, and medical records. Thank God, I was trained in crisis management in my nursing career and organizational skills from business school. I kept in touch with the office and tried to stay in the loop at work via cell and pay phones at the hospitals while collecting all of this data.

Doug and I arranged to go away for the weekend to Mendocino right after my first clinic visit. The second visit would be the day after we returned. Just the fact that I was able to get these appointments so fast—both within a week of the ultrasound—spoke to the potential seriousness of the situation. Or, who knows, maybe God just made the road clear to facilitate finding out, whatever the outcome would be.

We arrived at the first visit, at Stanford Hospital, with my neat shopping bag containing the Cliff Notes of my nightmare of a life over the past two and a half years. This was a teaching hospital. In addition to the seven doctors who were professors and associate professors of medicine, several students would be reviewing my case. They all came into the examination room en masse. I felt like I had been kidnapped for a freak show at Coney Island. Topless before all, one breast reconstructed and the other shriveled and damaged, visually examined, poked, and prodded, I was a humble broken specimen. This was what my life had come to be.

Then they left, saying they would be back shortly with their recommendations. Doug and I tried to keep things light while we were waiting.

After the complete panel had reviewed my case a few of them returned to present their conclusions. First, they recommended a CT scan of my lungs to determine if I had metastatic disease (horror). However, their radiologist thought that the questionable nodule on the lung X-ray was possibly an “artifact,” like a blood vessel (relief). If the lung scan was benign, then they recommended a mastectomy and lymph node biopsy immediately (horror). The enlarged lymph node in my armpit could be a reaction from the infection, but they did not recommend a sampling biopsy of the lump in the armpit, since it still wouldn’t rule out malignancy (horror). They also recommended that the lump be surgically removed (horror). They definitely would not recommend further radiation treatment (relief). I was also informed that, after their review of the pathology of the breast tumor, they felt there were not clear margins, further indicating the need for a mastectomy (horror). And finally, if the lymph node proved to be malignant, my prognosis would not be good, since it would mean that the cancer had continued to grow despite the Adriamycin. Therefore, I would not even be a candidate for high-dose chemo and a bone marrow transplant (horror on the magnitude of receiving a death sentence).

In stunned silence, off we went to Mendocino. For the entire weekend, I had to look death in the face once again. Although at that point in my life contemplating my own death was not a new experience, this time it was fraught with thoughts of horrific physical pain, and then of the me of me disappearing and leaving my children without a mother. I grieved the most for the last.

I talked, prayed, and cried to Doug for the entire drive and most of the weekend, until I had nothing left to say. He didn’t say much the whole time. He didn’t dismiss my fears or offer false hope, and for once he didn’t make things worse by starting a fight. He just listened intently, touched and held me. He gave me just the type of support I had always needed, and I loved him for it. This horrible time was worth it—just for that moment.

Once again, while looking out at the western horizon with the waves crashing against the rocky Mendocino coast, I said, “I give it to you, God. Thy will be done.”

On Monday we met with the other breast oncology clinic at the University of California, San Francisco. This visit required contact with just one professor. Their breast tumor board also concluded that radiation was not a good option. This was coupled with another confirmation of positive margins on the tumor pathology (meaning the surgeon didn’t get it all). The board recommended a mastectomy after the chemotherapy treatments were over. They also thought that the lesion on the lung was probably an artifact, and that a follow-up X-ray and subsequent CT scan, if necessary, would be helpful to rule out a tumor once and for all. They recommended that, since they thought the lymph node enlargement was probably a reaction to the infection, a core biopsy of the lump in my armpit would be a reasonable course of action.

Wow, what a difference in approaches, I thought. This recommendation was much more optimistic and less invasive. I liked this plan. Therefore, we had a plan.

March 12, 1996

Well, this morning was fun, having the core biopsy done. It felt like you have a broken bone and someone was hitting it. I couldn’t stop shaking and crying. I pray the results are good. I’ll know tomorrow. Nothing else is scheduled yet.

I slept today. My friends at work sent me flowers again. I’m getting embarrassed now. It never seems to end. It helps to see that people care. Tomorrow is Kim’s birthday. She’s pretty excited. I can’t believe she is 15 already.

Writing in a journal helped before. I hope I can keep it up.

March 13

Great news, the lymph biopsy was negative for cancer. The tide has turned, my luck has changed. We’ve turned the corner. I’m so excited. I have a couple of hurdles more, but this was the biggie. I’m looking forward to getting the report—just to see NEGATIVE finally in writing!

Alane and I scheduled La Costa spa treatments for during our stay on “sister” vacation in a few weeks. So many people called. They had their family and friends praying too! It works! I’m so awed and thankful!

Kim’s birthday went well. She seemed to like her cake, gifts, etc.

I spoke with my boss tonight. She told my potential new boss that I’ll be back full time in a few weeks and wants us to meet next week. We’ll see. I’m afraid that it is pushing things a bit. One day at a time.

March 15

Well, we dodged all the bullets. Yesterday’s CT scan showed atelectasis (collapse) of my lung, no tumor. It showed a spot on my liver. So then they did an emergency ultrasound, which showed cysts—nothing to worry about. I had the bone scan today, which on the computer showed “hot spots” (increased blood flow) on my rib where it hurts. The radiologist said everything looks fine. This radiologist was the doctor who read my ultrasound and MRI and noted nothing special when I had that bad breast infection. I don’t trust him, so I’m having my oncologist or my surgeon request that someone else look at it.

I’m going to stop all these tests when I’m through here. The more they look, the more they find, so they do more tests, only to find out it’s nothing. What a roller coaster.

I took Brad and Kim out for dinner. Kim is so smart and has a lot of common sense. We had a nice chat. Brad was very good.

March 17

Well, things with Doug were going fairly well. He seemed to be there during the crisis. Now he’s started his shit again. Previously, he had mentioned he was going to get counseling to help him be more in tune with me. Now he’s not going to do anything. This environment is so bad for my health and the well-being of the children. I want peace, quiet, kindness, certainty. I’m tired of trauma and turmoil.

I’m sitting in the backyard now. It is a beautiful spring day. There is a gentle breeze, not a cloud is in the sky. I’m sure I can get the events of the past week behind me, although I need to have a chat with my oncologist tomorrow.

March 19

Today I was at work from 10 until 4:15. I didn’t get that blown-out feeling, but my time there was very busy. The commute home was horrid, 1 hour, 20 minutes. I’m getting worried about all that I’ll need to know and all I don’t know now in my future/current job. I haven’t been focused there, and I’m not sure that I want to be. I know I’m too into the detail and I need to learn how to manage my time better.

I had a fun time with Brad tonight. He is so attention starved. Kim is having problems in Science. We are going to need to see her teacher.

March 20

The oncologist called tonight. The bone scan was fine. Still, I am so irritable. Doug is being antagonistic. Kim is in a bad mood. The nanny’s car is broken down and she’s doing “poor me.” I can’t wait to get out of here next week. I feel too put upon and I’m tired. Kim got another tardy slip today, which means detention on Saturday. She doesn’t think it is a big deal.

March 23

I had chemo yesterday—10 down, 2 to go. They are getting harder. I feel sick for longer. It helps to stay busy, not to think about it. My stomach feels like I’m going to be sick from both ends. I feel green.

I went to a mindfulness meditation class today. I think I can do that. I took Kim and her male friend to the mall. He asked her out. They were heavy-duty sucking face in the backseat of the car on our way home.

It is such a struggle to get her to focus on her studies. She’s grounded and getting an F in Science. She tries to use the easy way out but doesn’t realize that she’s not learning anything and will lose in the long run.

Whining and still depressed!

March 30

Well, today is day five at La Costa. I arrived here an uptight, knotted, stressed-out mess and am now starting to feel myself unwind. Spending time with Alane has been very enjoyable. We get along fabulously. We’ve always been so close, and now, even though she has plenty of stresses of her own, she is still so supportive of me. I have been chilling out, reading an entire Terry McMillan book, appropriately entitled Waiting to Exhale.

I can’t say I’ve relaxed this much on any vacation in the past couple of years. This is just what I’ve needed for a long time. I’ve had two full body massages, a neck and shoulder massage, a facial, a back facial, thermal mineral body scrub, and a pedicure. What pampering! Alane and I even took a class on mindfulness where we spent 20 minutes experiencing a raisin in our mouths as an exercise in living in the present moment. We laughed over dinner every night.