A Kick-Ass Fairy: A Memoir (14 page)

Tuesday I went for my antibiotic infusion at the hospital. In the hall I ran into my just-fired oncologist, who told me that the culture report had just come back. I thought he must be still following my case.

“The culture was negative except for a single colony of staph aureus, a bacteria, which I think is just a fluke,” he said with a sense of satisfaction.

I was upset that it was negative for infection, which meant that it was not treatable with antibiotics. Even though he was no longer my doctor, I asked him, “What do you think could be causing this?”

He stated, “It is probably a mild case of radiation mastitis, and eventually it will go away.”

I thought, Why don’t you walk around with an ice pick in your testicle until it eventually goes away, asshole!

That night we went to see Kim in a Christmas concert at her school. I left early. I couldn’t stand the pain anymore. It hurt to breathe.

The next morning, after forcing myself to go to Brad’s kindergarten Christmas party, I went to my follow-up appointment with the radiation oncologist. With the new information from the culture, he started me on a twelve-day course of prednisone to reduce the inflammation. On my insistence, he ordered an MRI of the breast that day as well. The MRI showed no masses but did show fluid around the implant and swelling in all the tissue. The implant showed multiple folds, probably caused by the fluid collecting around it.

My sister Alane and my nephew Cameron were soon to arrive for Christmas. I don’t know how I shopped, wrapped presents, or did anything else for Christmas. I just kept going so I would not think about the pain. Surprisingly, by Christmas day, the pain, swelling, and fever were subsiding a bit. I was a hairless animal in moderate pain on a steroid high for the holiday. This was now our second hellacious Christmas in California, since we had been in North Carolina the year before.

My sister’s presence helped me to endure. She and Cameron brought some fresh air into our home. We played piano music for four hands every day, just like when we were children. Kim sang. Doug, Cameron, and Brad played with the trains under the tree. Except for the chemo cap on my head and my wincing pickle puss, the Ghost of Christmas Present would have thought it was a regular Norman Rockwell family holiday.

The year 1996 began with the end of the prednisone and the return with a vengeance of the pain and swelling in my breast, accompanied by the fever. I returned to work, sick, on January 8. That same day I was started on a tapering dose of Decadron, another corticosteroid, for the next fifteen days. Radiation mastitis, I was told, takes time to heal. All I knew was that I’d had six radiation treatments for a total of about five minutes, and one month after discontinuing the treatments, there had been no healing. This time the relief of the symptoms was not as miraculous as with the prednisone (I deemed even slight improvement miraculous). I gradually was tapered off the Decadron and while watching episodes of Seinfeld, would sometimes erupt into tears and sobs. The steroid high was obviously followed by a crash—like falling off a cliff.

By the Martin Luther King weekend I didn’t know what to do anymore. I was getting weaker by the day. I asked Doug if he could take me to Stanford University’s Medical Library, where I thought perhaps if we did some research, we could come up with some answers about what was going on. At this point, I was beginning to lose hope.

We found an article entitled “Breast Cellulitis after Conservative Surgery and Radiotherapy” in the International Journal of Radiation Oncology. The article discussed cellulitis (my symptoms) as a previously unreported complication of lumpectomy and radiation. The treatment was antibiotics. We thought we had discovered gold.

On the way home, I told Doug that I couldn’t take this stress and suffering anymore and I needed to be by myself to sort some things out in my head. I wanted to get away from the kids, the house, and the doctors for a day or two to get some perspective. He thought I should go ahead and do what I needed to do. So, I arranged to spend two nights at the Claremont Hotel in Berkeley, beginning the next day after my appointment with my oncologist.

In the morning, while driving to the appointment, luggage and my research in tow, the oil light came on in my car. It was the last straw. Already hanging on by a thread, I experienced my first-ever anxiety attack. I felt hollowed out and had heart palpitations. Eventually, I pulled in to the closest gas station, had the attendant add oil to the car, and proceeded to the doctor’s office, deep breathing, praying for strength, and trying to calm myself down.

I was at the point of not being able to bear even one more thing. “God, are you listening?” I repeated over and over. “No more.”

I met with the oncologist, who appeared to be in a hurry, as usual. I told him that I needed a “quarterback” to get to the bottom of my deteriorating situation. I shared my findings from the Stanford library and gave him a copy of the article. He glanced at it, crossed his legs, and told me that the topic of the article wasn’t the cause of my problem. He reiterated that the culture was negative. He told me to continue taking my pain pills and wrote a script to refill the prescription.

“See you Friday for chemo, I have to go. Bye-bye.” I remember thinking, I must be going insane, as I noticed a hole in the sole of his shoe.

I left his office feverish and beaten. I cried during the entire drive to the hotel. When I arrived at my room, I cheered up a little when I saw that Doug had sent a beautiful arrangement of flowers. He knew that I was at the end of my rope. I went for a massage at the hotel’s spa, forgetting that I would have to lie on my abdomen, which I couldn’t do because of the hard football previously known as a breast. They massaged my feet for part of the hour.

That evening I went to the hotel restaurant by myself and was seated at a window that overlooked the San Francisco Bay. It was a beautiful evening. The jeweled lights of the commuter traffic were streaming over the Bay Bridge, red and white, looking like the flow of blood in the body—life was moving, white cells before oxygen, red after. The rest of the world was moving on. I, on the other hand, was stuck. As a seasoned warrior, I knew at that moment that I had done everything I could possibly do, repeatedly seen every doctor I could possibly see, had done my own research, and was now at the wall, out of ammunition, my resources exhausted. Again I was living the real-life nightmare of screaming for help when no one hears you. This wasn’t even like my previous experience of waking up on the operating table during surgery. I was awake, walking, talking, seeing and touching people, but getting no response, no effect, no help. I thought of the homeless, the insane.

I knew at that moment that there was no way out and that I was going to die soon. It was strange, but I felt a sense of peace. At least dying would be an end to the suffering and the horrific pain. I was beyond simple exhaustion—I was very sick. I knew that my spirit, let alone my body, could not go on much longer.

That night I said to God, “OK, I give up. Thy will be done.” After that, I slept and went home the next day, a day early, to be with my family.

Not knowing what else to do, and since I couldn’t sit still, I went back to work. Everyone told me that I looked grayish green. Every day I continued to spike a temperature and wake up with night sweats, and everything hurt. I went for my chemo at the end of the week. When they flushed the IV line with saline, I felt it gurgle in my neck. I told the nurse about the gurgling.

“Everything is just fine. We have a great blood return.”

She didn’t listen, didn’t care. I didn’t care anymore either.

I spent the weekend in bed. I felt physically toxic. Sunday night I had an amazing dream. An angel came to me and told me to remember to see my primary care doctor, Dr. Donald. I immediately woke up. I know I hadn’t previously thought of calling him. I hadn’t seen him since the diagnosis. Why would I, since I was seeing all these experts?

The next morning, a little uplifted, I called and went to see Dr. Donald. He examined me and said that my breast looked bad. It was hot, swollen to the point that the skin looked like it would crack open, and it hurt even to breathe on it. The scar from the lumpectomy six months before was now so thin that it looked like a water blister. He told me that he thought I should have the implant removed immediately. He ordered blood work “stat.”

My white blood cell count was over 17 on chemo! Normally, my count would be 5 or less, depending on where I was in the chemo cycle. He said this situation was unacceptable and that he would call my oncologist and find a plastic surgeon in my health care plan to remove the implant as quickly as humanly possible. He would make all the arrangements. After that, all I could do was cry with relief for the rest of the day. Finally, someone was going to do something! Thank you, God.

Later that same day Dr. Donald called and gave me the name of the surgeon who was going to contact me and arrange to see me as soon as possible—that day or the next. He never got a chance to call. The next morning I could barely walk. My legs were so sore and stiff I couldn’t walk. Doug was already at work. The nanny was out dropping off the kids at school. I rolled off the bed onto the floor and lying on one side crawled like a caterpillar to the bathroom where I pulled myself up the wall to reach the telephone hanging there. I called Doug and asked him to come home right away. By noon, that same day, January 24, six weeks after I stopped the radiation treatments, I was admitted to the hospital with Doug at my side.

Things got busy very fast. I met the new plastic surgeon, who was scheduled to operate and remove the implant in just a few hours. There were many blood draws for lab tests and an IV was to be started using the Port-A-Cath, since my veins were shot. While they were trying to flush the catheter, my breast surgeon, having heard I was in the hospital, came into my room. Again I felt gurgling in my neck, and I told her this. She felt my neck while flushing the catheter with saline. Before you could blink, I was sent to X-ray, where it was confirmed that the catheter had flipped out of the superior vena cava and was now in my jugular vein. Proof again that I was not crazy.

So before the breast surgery I had to be detoured to the cardiac catheterization department and sedated with Versed, a wonderful drug. Then the radiologist threaded a catheter through my veins from my groin up to my neck and brought the Port-A-Cath tube back to its proper place. The Versed sent me to a tropical island full of incredible colors, the scent of coconuts, and the musical sounds of steel drums. I didn’t care about anything.

Shortly after the catheterization was done and too soon after the drug wore off, I was back in my room briefly waiting with Doug until the breast surgery. While we waited for the surgery, the plastic surgeon that performed my reconstruction stopped by, as well as an infectious disease doctor and yet another partner of my oncologist. I thought, Boy, news travels fast around here. And as usual, my boss called the room.

In the operating room, the female anesthesiologist was very kind and caring. I wondered whether she was always this way or if my condition was that bad. The implant was removed. When I awoke, I noticed an immediate relief of the pain. The fact that the underside of my breast was left open with two huge drains hanging out of it was irrelevant on the pain meter. We soon found out that indeed the breast was infected. The plastic surgeon removed the implant, along with over 150 cc (5 ounces) of pus and necrotic breast tissue. The culprit was the staph aureus they had found a colony of earlier. I wasn’t out of the woods yet. I was started on Vancomycin again, twice a day for twelve days, and would have to be monitored closely.

On the first day post-op, my new regular oncologist, Dr. S., came to see me. He sat on the foot of my bed, took both of my hands, and looked me in the eye in an emotional state.

“I’m so sorry.”

I can’t even say what that meant to me. I felt like a human again—not a case, not a thing. Over the next day, all of my doctors (except for the radiation oncologist) came by to check in on me. I felt like Dorothy in The Wizard of Oz waking up in her room after the horrible tornado with the farmhands all stopping by.

A couple of days later, I was discharged with an IV, drains, and a visiting nurse, still extremely weak, but alive. I arrived home to scores of cards, flowers, and plants. Lyn had asked me if she could let people know what was going on before I was admitted. I’d been reluctant—I didn’t want to be pitied. Then she said something I will never forget. “Linda, you are not allowing people to receive the blessings they would receive if you allowed them to show they care. And besides, you could use the prayers, don’t you think!”

Well, I admitted, I had never thought of it that way before. And not surprisingly, it did make a difference in every way. Soon, everyone in my life who knew what was going on was praying for me and asking everyone they knew to pray for me as well. Prayer chains were started by my sister Diane’s and Lyn’s Bible study groups.

After the glow of salvation wore off (about one week post-op), I sat and thought about what had just happened. I was angry with all of these doctors except Dr. Donald and the new plastic surgeon. I now knew that the symptoms I’d had were not from breast cellulitis, the subject of my research, nor was it radiation mastitis, the reductive diagnosis of my medical team. It was an infection, probably contracted in the hospital during the original lumpectomy surgery. I thought it was likely that the chemotherapy and then the radiation treatments—the final blow—had knocked out my breast’s local immune system, allowing the staph infection to thrive. But what did I know? I was forced to be my own doctor without any of the tools of the trade or hospital and prescription privileges.

Later that week, I had an appointment with the radiation oncologist. He told me that my most recent ordeal was going to be presented at the weekly hospital tumor board for the physicians in attendance to review what had just happened, to evaluate what they could have done differently and, most important to me, how to locally treat the remaining left breast. He told me that, unfortunately, I was the statistical one or two complications his department had encountered in the current year. That characterization rang of thing to me.