19. Battling On

The letter dated October 1, 2009 was quite clearly standardized with the exception of the "fill-in-the-pertinent-information-and-names-so-it-looks-like-we-are-being-attentive" blocks of type. It was a three page letter. Page one said my request was denied; pages two and three explained how one could appeal this decision. I focused on pages two and three.

I wrote an extensive and detailed letter explaining my position and lack of appropriate direction and treatment. I mentioned how ironic it was that the insurance carrier was denying my request to see a provider "out of network" while at the same time they denied the original request to see one of their "supported/partnered/in-network" doctors at UCSF. Confusion abounded, wouldn't you say? I ask to go to one of their approved plastic surgeons, and ooopps, denied. Fine, I'd like to go see this doctor now, and oopps, again, denied. And you say my "primary care physician is responsible for coordinating your healthcare by either direct treatment or referral to a participating specialist. Further, all non-urgent care should be received from you PCP..."  Non-urgent? Primary Care Physician? Through my anger, I had to laugh. In their opinion, cancer treatment wasn't urgent and/or my PCP should direct my treatment, not a surgical oncologist, medical oncologist, etc.

My appeal was, predictably, denied. Their effort to appease me was to assign a case manager to me. Shortly thereafter, after a brief meeting with said case manager and a representative from the insurance group, I yelled, cried, and stormed out of the room. These people had no idea what had transpired in my case thus far and did not have any answers as to why my initial request for a consultation with a plastic surgeon at UCSF had been denied. As I brushed past them upon exiting the room, I told them, "You had your chance to heal me, you've had months and you failed!" The meeting was pointless.

 Next step was communicating with the Department of Managed Healthcare and Cancer Legal Resources Center. I was fighting, battling and refused to give up. The clock was ticking and the time-bomb was in my breast. 

My plea for an expedited appeal was denied and I was in a holding pattern as I waited for answers from the DMH and CLRC when a sweet, warrior-sister and friend connected me via email with another survivor-sister. I emailed her a shortened version of my medical maze up to that day. This stranger-turned-sister's name was Kim and her first two statements to me in her email summed up everything I had been feeling. 

"Oh my gosh - you can't be serious! This is just simply wrong!" she wrote. "The issue you are dealing with is that you made a surgical decision without all the proper information and/or there is now new information* to change what needs to be done. I am alarmed by what has happened to you!"

(*You'll recall that a few months earlier, the wise Dr. R had suggested I get an Oncotype DX test done on my tumor. Fortunately, that was done and the results had (finally!) come back. I had to call repeatedly to ask for results from Dr. F's office and after many attempts and being told he would not give me the number over the phone, I was finally told my number. I'm nothing if not a nag.

The Oncotype DX^® test is a diagnostic test that helps identify which women with early-stage, estrogen-receptor positive and lymph-node-negative breast cancer are more likely to benefit from adding chemotherapy to their hormonal treatment. This test also helps assess the likelihood that an individual woman’s breast cancer will return. (Source: www.oncotypedx.com)

If your number is zero to 17 or 18, you are in the "low-risk" recurrence group. If you are 18-30 or so, you are in the "intermediate risk" recurrence group. Anything higher than 30 puts you in the "high risk" recurrence group. I was a 33.)

The stakes were high for me. I couldn't sit around and wait for answers that didn't seem to be coming anytime soon. I reached out to a woman I didn't know very well, but of whom I had heard wonderful things. Her name was Cindy Love. She was (and remains) the Executive Director of the local breast cancer awareness and advocacy group Albie Aware. The founder, Doug Carson, was a friend we knew through the printing/advertising specialties business. 

Cindy asked me to fax her the appeals letter immediately. She was heading to the state senate floor the next day and would be happy to bring this mismanaged case of healthcare to the attention of legislators or anyone else there who would listen. 

To this day, I do not know what transpired between the time I faxed the letter to Cindy and the time I answered my office phone a day or two later. It was the medical director of the insurance group that had continually denied my requests. My memory is a bit fuzzy on the majority of the conversation, with the exception of two sentences he spoke to me - "We've learned from your case. We will cover your treatment with the doctors you choose." I cried tears of joy. My coworkers and Craig cried in celebration with me.

I called Cindy and thanked her for whatever it was she had done or not done. It didn't matter, for this battle had been won. I called, emailed, texted everyone whom I thought would be interested to know the update. Then, I emailed Dr. Singhal and told her the good news. Plans were immediate set into place to coordinate the surgery ... October 19th would be the day ... or so we thought. Fate, disguised as severe weather both in Sacramento and across the Atlantic, had other plans.

I knew I would need someone with me for several days after surgery as I recovered and I knew my care giver had to be one of my two sisters. While I was blessed with incredible, amazing and caring friends who would gladly help me with anything I needed, I recognized the intimate nature of care I would need after surgery. I didn't feel comfortable asking friends to help me bathe, change clothes, brush my hair, or clean and measure my drains. Knowing my older sister, Caren, isn't one for attending to physical wounds and had five children at home with her husband working full-time, having her come out for a week wasn't an option. My younger sister, Cheryl, would have to be the one. She didn't hesitate one blink despite having three young boys (all under the age of five) at home, a husband building his independent contracting business, attending school several mornings and evenings a week and living in our parents home. Our mother, who was like a second mother to the boys, would be returning soon from her annual trip across the Atlantic to her hometown in Aberdeen, Scotland. With love and support from her husband, Kyle, and knowing mom would be home soon to help with the boys, Cheryl was on-board to be my caregiver. 

October 13th was a day marked forever in my mind. Sacramento was under one of the strongest, severe storms I had ever witnessed. The power went out at the office and in many parts of the city. Trees were coming down causing havoc on the roads. The city was a mess. We, at work, however, did our best to make the most of the situation. We had no electricity so we gathered the staff around a production area table and did the only work we possibly could in that sort of situation ... manual labor ... inserting envelopes for a large mailing. 

My cell phone rang. It was Cheryl. We spoke daily, so I assumed she was calling to give me the daily update on my beloved nephews.

"Hey, I just got a call from Julie (our cousin in Aberdeen). Mom and Jann (mom's neighbor and friend who accompanied her on this vacation to Scotland) were in a fender-bender. It's nothing major. I'll let you know if I hear anything else," she told me quite calmly. Fender-benders happen every day and we were just glad to hear it wasn't more serious. 

It wasn't long before my phone rang again. Cheryl was calling, again. This couldn't be good I thought to myself. It wasn't. 

"Okay, so I guess they were in a car that got hit by another car and I think she said they were being taken to the hospital to be checked out," she updated me. 

What happened to a fender-bender? Why would they be going to the hospital if it wasn't anything major? I told Cheryl to keep me posted if she heard anything else. Meanwhile, I was determined to get more detailed and accurate information any way possible. With the power still down, I could only resort to what I could find online using my cell-phone. I knew the area where mom was staying in Aberdeen and decided to call the hospital closest to that location. I dialed the internal number on my phone. Wouldn't connect. I tried again. Wouldn't connect. I had to enter a credit card number on the keypad in order to connect the call. Fine, whatever it cost, I was going to find out what was happening with my mother. 

" 'Ello? Aberdeen Royal Infirmary, Accidents & Emergency Department," the heavily accented woman said. 

"I'm calling from America. I think my mom has been taken to your hospital and I just want to see if she is there and if she is okay," I explained. The nurse asked for mom's name and said to hold the line while she checked.

"Oh, aye, yur mum's here, aye. She's in Emergency, but she's alive," she informed me. 

Alive? What? Was there a possibility she wouldn't be alive? Fender-bender, no big deal. Alive? I was confused. 

"Hold the line, miss, and I'll round up the doctor," she continued. She, not the doctor, returned to the phone and gave me the information. 

"Your mum's got a broken sternum, a possible liver tear, severe bruising, bleeding, a leg puncture..." she spoke but her words were lost on me. I was speechless and unable to fully comprehend what was happening.

"Is she okay? Can I talk to her? What happened?" I questioned of the nurse. Coincidentally, mom was being wheeled past the nurses station just then and they let me talk to her ever so briefly. 

"Mom? Mom?? Are you okay? What happened? What do we do?" I asked.

"Cherí? Yes dear, I'm okay, I just hurt and..." she whispered into the phone. That was all we got to say to one another before she was wheeled away. 

My uncle Rod, aunt Linda, family friend Jann, and mom had all been in the car. They were broadsided by a BMW that had slid out of control on the wet, windy countryside road in Aberdeenshire. The woman driver was injured and her passenger, her nine-year old son, was taken via helicopter to the hospital. Rod, Linda, Jann and mom each had broken sternums and many, many other severe injuries. Mom and Jann had been set to return home to the States the next day; but now, they were in the hospital, bruised and broken. With possible internal injuries, including blood clots, they remained in the hospital for five days. They were not released for travel back to the States for three weeks.

(This is a link to the article in the local Aberdeen paper that day. The details in the article were not entirely accurate, as we would learn more each day about the true severity of the accident. http://www.eveningexpress.co.uk/Article.aspx/1438867)

After being released from the hospital, mom spent the next two weeks at the home of her dear friends, Jim and Dorothy. They took incredible care of her and pampered her with hot water bottles, tea, her favorite foods, etc. We spoke almost daily with mom and learned a few more details of the accident. We learned that mom had been pinned in the car, unable to get out. The other passengers all were able to exit the car, but mom's leg had been punctured by the seat in front of her and she was unable to move. She couldn't yell, breathe or move. She had been in and out of consciousness and had thought she was going to die. 

With time and the compassionate care of Jim and Dorothy, mom recovered. However, there was serious question as to whether or not she would be able to make the journey home by herself. Caren, Cheryl and I talked about which one of us could travel overseas and accompany her home (as sending our father was not an option). Caren had no desire to go but would, of course, if we couldn't. I wanted to go, but realized I was scheduled for my surgery soon and, well, I didn't have a passport. Cheryl, the only one of the three of us with a current passport, did not want to fly across the ocean at all! We were stuck ... what to do, what to do?

I talked with Dr. Singhal and informed her of what was transpiring. She was very sympathetic and wished a speedy recovery for my mother. I asked if considering the circumstances of possibly needing to travel abroad to get my mother, could surgery be moved back a week. It was moved to November 2nd. 

Fortunately, Mom recovered well enough to make the journey home by herself, with only the assistance of wheelchairs at the airports and folks to carry her bags. I booked Cheryl's round-trip ticket for her trip to Sacramento. Cheryl arrived around noon on Sunday, November 1st in Sacramento. Mom arrived back home, in Utah, about two hours later. They had missed one another by only a few hours. Kyle, Cheryl's husband, is a hero to me for many reasons, one of which is the way he so lovingly and without question supported his wife's undertaking in caring for me. In doing so, he was solely responsible for the home, three young boys, his job, and in-laws (one of whom was unable to do much because of her injuries). He didn't complain. He knew the love we sisters have for one another and knew this was something that just had to be done. 

I brought my four-legged companion, Sutter (my black lab), with me to the airport to meet Cheryl. We went to Target, then back to the airport a while later to pick up Craig. The three of us enjoyed dinner at a local favorite restaurant and headed to Julia's home for dessert. I wanted Julia and Cheryl to meet, for they are two of my most favorite and adored people. I enjoyed dessert immensely, knowing I was forbidden to eat or drink anything after midnight. The next day, remember, was double-mastectomy day ...