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 ...
Thursday, April 25, 2013
Tuesday, April 23, 2013
18. I'll Fight It!
My type A personality kicked into high gear. I copied two sets every piece of medical record information I had accumulated since June 1st. I kept a neatly organized copy for myself and the other set was placed into a labeled, two-prong manilla folder. My business card was attached to the front of the folder. This would be Dr. Singhal's copy. (And yes, I am using this doctor's actual name, not some random initial to represent her last name. She saved my life and I'm proud to call her my doctor. You will see I also use my plastic surgeon's last name. He is a professional, talented and exceptionally kind man.)
Her office was in Mountain View, which is about 2 hours south & west of Sacramento. I didn't mind the drive that Friday afternoon. It was the day before my 35th birthday and I couldn't have asked for a better present than to have been given a consultation appointment with this highly esteemed surgical oncologist. As had been requested of me, I brought along the pathology slides from my previous surgeon. Dr. Singhal wanted to have her pathologist personally review the slides and results.
Driver Craig parked the car, we each popped a mint and I applied fresh lipstick. I approached the receptionist's desk and the kind lady asked if she could be of any help.
"I'm here to see Doctor Singhal," I said. Actually, I told her I was there to see Doctor sing gall. She politely informed me it was pronounced like single. Dr. Singhal would be with me shortly. I paid via personal check the $300 consultation fee. My insurance carrier would not cover this consultation, seeing as Dr. Singhal was "out of network".
Meanwhile, a confident and smiling woman of Indian descent walked past me into the office area. Five minutes later, as I sat in the exam room, I realized this woman was the amazing Dr. Singhal.
After introductions and polite, casual small talk, we got down to business. Our discussion covered the entire spectrum of treatment options, concerns, possibilities, etc. She asked me questions and listened to my answers. I asked her questions and she thoroughly, kindly, professionally and warmly offered me answers. She was impressed, I admit, by the manilla folder full of details. She knew I was a type A personality right off the bat. Well, I like to think she was impressed; she just laughed, really.
She did a physical exam and was not impressed by what she found. She shook her head and pulled up the straps of my tank top.
"So, what do you think I should do now?" I asked Dr. Singhal.
"Well, honestly, it's entirely your decision, as it's your body, your life. But, my opinion would be definite mastectomy followed by chemotherapy possibly and hormone therapy," she told me. "My job is to make sure you are alive as long as possible. I'm of the opinion that aggressive treatment is the best way to ensure you are here 40, maybe 50 years from now," she continued.
I agreed. I reiterated to her that my main concern in all this was to be alive to see the kids grow up. I didn't need breasts to do that. I didn't need hair, if it came to that, either. I loved that she was honest, direct and yet, all the while, kind, professional, and quite humorous. She laughed a lot. I felt at ease with her. She agreed that I had been lost in the medical system in my area and it was unfortunate that my unique case hadn't been attended to by more highly trained and specialized doctors.
"Dr. Fazilat, the plastic surgeon, will have his office call you to talk about reconstruction options," she added. (Side note: Dr. Fazilat himself called me that evening. He was incredibly kind, understanding and sympathetic to my situation. I instantly felt as sure of him as I was of Dr. Singhal. I knew I would be in good hands. I mean, really, how many plastic surgeons would call a potential new patient personally, having just finished surgery?)
"Oh, and you should have someone up there take a look at your thyroid," Dr. Singhal mentioned to me. What? My thyroid? Why?
"Didn't anyone tell you? The chest scan you had done showed a few small nodules on your thyroid that should be checked out," she said. Nope, nobody had bothered to mention that to me until now. Thank goodness Dr. Singhal had requested copies of all my test results as well as the pathology slides. Damn, she was thorough!
I knew she was the doctor I wanted and needed to help save my life. She gave me a feeling of peace and comfort. She was going to lead me out of the maze. She would be the captain of my ship. She would be the one who saved my life.
On September 24th, I had a follow-up appointment scheduled with Dr. F. He had no additional information for me, but I had some for him. I handed him the sheet of paper I had printed out that listed the names, contact information and my official request to be treated by Doctors Singhal and Fazilat. He simply shrugged his shoulders and tossed the paper into my medical record file.
"Okay, I'll submit the request, but you should know they are going to deny it," he stated very dismissively. Honestly, I don't think he could have cared one iota less about me, my cancer, my treatment than he did at that moment.
"Why would they deny it?" I naively asked of him.
"They just will. Those doctors are out of network and you could have Dr. L do the mastectomy here," he continued. "So, what are you going to do when they deny it?"
I firmly and repeatedly responded by telling him, "I'm going to fight it until they approve it!"
"That's fine, but they will deny it again," he somewhat proudly told me.
"I'll fight it," I told him. "I will fight it and fight it more until they realize they need to approve this and let me be treated by the doctors I choose and whom I know will give me the best chances of survival! I will fight!"
I was a warrior prepared for battle ... against breast cancer and now against this doctor and insurance company who were standing in my way of being treated. The way I saw it, these doctors had their chance to rid my body of breast cancer and they failed. They failed and left me to wander the medical maze on my own. They had no plan for me, no sense of concern or compassion for this 34-year old, no, wait, now 35-year old, young woman with bilateral breast cancer. Instead, they butchered me in an unnecessary surgery and left cancer in my chest muscle.
Yeah, you'd better believe I was prepared to fight for the best medical treatment I could get. I would fight and fight for my team of Dr. Singhal and Dr. Fazilat. I was a warrior prepared for battle. And battle I did ...
Her office was in Mountain View, which is about 2 hours south & west of Sacramento. I didn't mind the drive that Friday afternoon. It was the day before my 35th birthday and I couldn't have asked for a better present than to have been given a consultation appointment with this highly esteemed surgical oncologist. As had been requested of me, I brought along the pathology slides from my previous surgeon. Dr. Singhal wanted to have her pathologist personally review the slides and results.
Driver Craig parked the car, we each popped a mint and I applied fresh lipstick. I approached the receptionist's desk and the kind lady asked if she could be of any help.
"I'm here to see Doctor Singhal," I said. Actually, I told her I was there to see Doctor sing gall. She politely informed me it was pronounced like single. Dr. Singhal would be with me shortly. I paid via personal check the $300 consultation fee. My insurance carrier would not cover this consultation, seeing as Dr. Singhal was "out of network".
Meanwhile, a confident and smiling woman of Indian descent walked past me into the office area. Five minutes later, as I sat in the exam room, I realized this woman was the amazing Dr. Singhal.
After introductions and polite, casual small talk, we got down to business. Our discussion covered the entire spectrum of treatment options, concerns, possibilities, etc. She asked me questions and listened to my answers. I asked her questions and she thoroughly, kindly, professionally and warmly offered me answers. She was impressed, I admit, by the manilla folder full of details. She knew I was a type A personality right off the bat. Well, I like to think she was impressed; she just laughed, really.
She did a physical exam and was not impressed by what she found. She shook her head and pulled up the straps of my tank top.
"So, what do you think I should do now?" I asked Dr. Singhal.
"Well, honestly, it's entirely your decision, as it's your body, your life. But, my opinion would be definite mastectomy followed by chemotherapy possibly and hormone therapy," she told me. "My job is to make sure you are alive as long as possible. I'm of the opinion that aggressive treatment is the best way to ensure you are here 40, maybe 50 years from now," she continued.
I agreed. I reiterated to her that my main concern in all this was to be alive to see the kids grow up. I didn't need breasts to do that. I didn't need hair, if it came to that, either. I loved that she was honest, direct and yet, all the while, kind, professional, and quite humorous. She laughed a lot. I felt at ease with her. She agreed that I had been lost in the medical system in my area and it was unfortunate that my unique case hadn't been attended to by more highly trained and specialized doctors.
"Dr. Fazilat, the plastic surgeon, will have his office call you to talk about reconstruction options," she added. (Side note: Dr. Fazilat himself called me that evening. He was incredibly kind, understanding and sympathetic to my situation. I instantly felt as sure of him as I was of Dr. Singhal. I knew I would be in good hands. I mean, really, how many plastic surgeons would call a potential new patient personally, having just finished surgery?)
"Oh, and you should have someone up there take a look at your thyroid," Dr. Singhal mentioned to me. What? My thyroid? Why?
"Didn't anyone tell you? The chest scan you had done showed a few small nodules on your thyroid that should be checked out," she said. Nope, nobody had bothered to mention that to me until now. Thank goodness Dr. Singhal had requested copies of all my test results as well as the pathology slides. Damn, she was thorough!
I knew she was the doctor I wanted and needed to help save my life. She gave me a feeling of peace and comfort. She was going to lead me out of the maze. She would be the captain of my ship. She would be the one who saved my life.
On September 24th, I had a follow-up appointment scheduled with Dr. F. He had no additional information for me, but I had some for him. I handed him the sheet of paper I had printed out that listed the names, contact information and my official request to be treated by Doctors Singhal and Fazilat. He simply shrugged his shoulders and tossed the paper into my medical record file.
"Okay, I'll submit the request, but you should know they are going to deny it," he stated very dismissively. Honestly, I don't think he could have cared one iota less about me, my cancer, my treatment than he did at that moment.
"Why would they deny it?" I naively asked of him.
"They just will. Those doctors are out of network and you could have Dr. L do the mastectomy here," he continued. "So, what are you going to do when they deny it?"
I firmly and repeatedly responded by telling him, "I'm going to fight it until they approve it!"
"That's fine, but they will deny it again," he somewhat proudly told me.
"I'll fight it," I told him. "I will fight it and fight it more until they realize they need to approve this and let me be treated by the doctors I choose and whom I know will give me the best chances of survival! I will fight!"
I was a warrior prepared for battle ... against breast cancer and now against this doctor and insurance company who were standing in my way of being treated. The way I saw it, these doctors had their chance to rid my body of breast cancer and they failed. They failed and left me to wander the medical maze on my own. They had no plan for me, no sense of concern or compassion for this 34-year old, no, wait, now 35-year old, young woman with bilateral breast cancer. Instead, they butchered me in an unnecessary surgery and left cancer in my chest muscle.
Yeah, you'd better believe I was prepared to fight for the best medical treatment I could get. I would fight and fight for my team of Dr. Singhal and Dr. Fazilat. I was a warrior prepared for battle. And battle I did ...
Wednesday, April 17, 2013
17. Adrift
Dr. F said he would send the referral request to UCSF for me to see see Dr. E (the breast surgeon Dr. R had recommended) and a plastic surgeon. They would call me to set up an appointment but he also suggested I call them to help expedite the process. I was happy to do whatever I could to help move things along.
I waited a couple days before I called Dr. E's office. I naively assumed that would have given them time to have received the paperwork from my doctor's office. When I got through to someone in Dr. E's office, they had no idea who I was or why I was calling to schedule an appointment. I gave them the background and was told simply that an appointment couldn't be set until they had received and processed all the necessary paperwork. I spent the next two weeks battling continually with the Medical Assistant in Dr. E's office. Each day I called only to be told "we don't have the paperwork yet" or "the referral didn't get faxed to the right office and needs to be sent again" or "your insurance hasn't authorized the visit yet" ... these were the responses I received each time I called them. They didn't call me. It took two weeks for all the pieces to come together before I was able to finally set an appointment to see the esteemed Dr. E.
"The first available appointment we have is for September 30," I was told. That would be six weeks out - for the consultation visit!
"I'm sorry, that's six weeks away. I'm not trying to schedule surgery, just the consultation with her," I pleaded. I was told to, essentially, take it or leave it. Fine, September 30 was put on my calendar. At least I had an appointment. But six weeks away? What about the cancer still in my chest wall? Will it grow and/or spread before then? Is that too long to wait? How long will it take after that to actually get into surgery? The questions were mounting.
I opened the letter addressed to me from my insurance carrier expecting to see the standardized form saying your referral to see Dr. Whomever for Plastic Surgery Consult is approved. Nope. The request had been denied. I was confused. They approved my consultation with the breast surgeon and denied the plastic surgeon consult. Damn maze again.
The next section here is pulled directly from a letter I wrote not too long afterwards ...
"On September 10, 2009, Dr. F called me directly to say, "if I was his wife, he'd have me in surgery the next week and I could have Dr. L perform the mastectomy right away and we would worry about the reconstruction later". I called his MA to ask what this means and what I should be doing. She informed me that he was supposed to have called me to tell me the insurance company denied the plastic surgeon consult. He told me nothing of that. Meanwhile, I kept inquiring with his MA as to what our next steps were and if there was a plan. She said she thought that Dr. L might be talking to Dr. F about getting a plastic surgeon from another hospital to get special privileges to work with him at the county hospital to perform the immediate reconstruction. However, neither Dr. L nor Dr. F ever discussed this with me and I have yet to receive any additional information on the subject. Additionally, the insurance "case manager" said she wasn't sure why the plastic surgeon consult request had been denied. It shouldn't have been ... perhaps, she said, they mistook the request to be a second opinion consult. She wasn't sure."
Recap - It was the middle of September, three months after the original bilateral lumpectomy surgery. I still had cancer in my chest wall and I was no closer to getting it out than I had been three months earlier. I was lost, adrift, in the middle of the medical maze. There was no captain of my ship, no master directing me to my next port. Nobody in the medical field seemed to care what happened to me ... I was passed from doctor to doctor to doctor, like they were playing hot-potato with my life! The insurance company didn't talk with the oncologist, the oncologist didn't talk to the referral doctor, the general surgeon didn't talk to the oncologist, and nobody talked to the patient - ME!
Somewhere in this time frame of history, I added a category to the short list of reasons why Cherí would cry - utter frustration and anger with the medical and insurance companies!
I had no choice but to take the wheel and steer the ship through the maze myself. I turned to social media, namely Facebook. Fortunately, I was blessed to have an incredibly amazing circle of family and friends. A dear friend of mine, Ann-Christel, reached out to me to offer assistance. (Ann-Christel and I met back in junior high, twenty-some years earlier. We had lost touch over the years, but I had always hoped to regain communication with her someday. She was one of those people you admired as a teenager and whom you knew would be successful, kind and always a faithful friend. Thanks to FB, we had reconnected just a short while before my medical nightmare had begun.)
Her emailed message to me was short, sweet, and simple. She had married into a family that had good medical-field connections in the Bay Area and she would be more than happy to help me in any way possible. My stubborn independence had to be set aside as I knew I needed help in this battle. And, there in her short message, was my glimmer of light and hope.
The day after I accepted her offer of help, I received a phone call from her mother-in-law, Anne. Her voice was kind, that of a loving and devoted mother and grandmother; yet, she spoke confidently and with purpose. She asked if I could be available to meet with a doctor they knew (and highly recommended) on Friday - less than 48 hours later. I didn't consult my calendar - I just said yes!
I waited a couple days before I called Dr. E's office. I naively assumed that would have given them time to have received the paperwork from my doctor's office. When I got through to someone in Dr. E's office, they had no idea who I was or why I was calling to schedule an appointment. I gave them the background and was told simply that an appointment couldn't be set until they had received and processed all the necessary paperwork. I spent the next two weeks battling continually with the Medical Assistant in Dr. E's office. Each day I called only to be told "we don't have the paperwork yet" or "the referral didn't get faxed to the right office and needs to be sent again" or "your insurance hasn't authorized the visit yet" ... these were the responses I received each time I called them. They didn't call me. It took two weeks for all the pieces to come together before I was able to finally set an appointment to see the esteemed Dr. E.
"The first available appointment we have is for September 30," I was told. That would be six weeks out - for the consultation visit!
"I'm sorry, that's six weeks away. I'm not trying to schedule surgery, just the consultation with her," I pleaded. I was told to, essentially, take it or leave it. Fine, September 30 was put on my calendar. At least I had an appointment. But six weeks away? What about the cancer still in my chest wall? Will it grow and/or spread before then? Is that too long to wait? How long will it take after that to actually get into surgery? The questions were mounting.
I opened the letter addressed to me from my insurance carrier expecting to see the standardized form saying your referral to see Dr. Whomever for Plastic Surgery Consult is approved. Nope. The request had been denied. I was confused. They approved my consultation with the breast surgeon and denied the plastic surgeon consult. Damn maze again.
The next section here is pulled directly from a letter I wrote not too long afterwards ...
"On September 10, 2009, Dr. F called me directly to say, "if I was his wife, he'd have me in surgery the next week and I could have Dr. L perform the mastectomy right away and we would worry about the reconstruction later". I called his MA to ask what this means and what I should be doing. She informed me that he was supposed to have called me to tell me the insurance company denied the plastic surgeon consult. He told me nothing of that. Meanwhile, I kept inquiring with his MA as to what our next steps were and if there was a plan. She said she thought that Dr. L might be talking to Dr. F about getting a plastic surgeon from another hospital to get special privileges to work with him at the county hospital to perform the immediate reconstruction. However, neither Dr. L nor Dr. F ever discussed this with me and I have yet to receive any additional information on the subject. Additionally, the insurance "case manager" said she wasn't sure why the plastic surgeon consult request had been denied. It shouldn't have been ... perhaps, she said, they mistook the request to be a second opinion consult. She wasn't sure."
Recap - It was the middle of September, three months after the original bilateral lumpectomy surgery. I still had cancer in my chest wall and I was no closer to getting it out than I had been three months earlier. I was lost, adrift, in the middle of the medical maze. There was no captain of my ship, no master directing me to my next port. Nobody in the medical field seemed to care what happened to me ... I was passed from doctor to doctor to doctor, like they were playing hot-potato with my life! The insurance company didn't talk with the oncologist, the oncologist didn't talk to the referral doctor, the general surgeon didn't talk to the oncologist, and nobody talked to the patient - ME!
Somewhere in this time frame of history, I added a category to the short list of reasons why Cherí would cry - utter frustration and anger with the medical and insurance companies!
I had no choice but to take the wheel and steer the ship through the maze myself. I turned to social media, namely Facebook. Fortunately, I was blessed to have an incredibly amazing circle of family and friends. A dear friend of mine, Ann-Christel, reached out to me to offer assistance. (Ann-Christel and I met back in junior high, twenty-some years earlier. We had lost touch over the years, but I had always hoped to regain communication with her someday. She was one of those people you admired as a teenager and whom you knew would be successful, kind and always a faithful friend. Thanks to FB, we had reconnected just a short while before my medical nightmare had begun.)
Her emailed message to me was short, sweet, and simple. She had married into a family that had good medical-field connections in the Bay Area and she would be more than happy to help me in any way possible. My stubborn independence had to be set aside as I knew I needed help in this battle. And, there in her short message, was my glimmer of light and hope.
The day after I accepted her offer of help, I received a phone call from her mother-in-law, Anne. Her voice was kind, that of a loving and devoted mother and grandmother; yet, she spoke confidently and with purpose. She asked if I could be available to meet with a doctor they knew (and highly recommended) on Friday - less than 48 hours later. I didn't consult my calendar - I just said yes!
Tuesday, April 16, 2013
16. I Choose ...
Do you know how you'd respond if you were told you had breast cancer? Over the past four years, I've heard answers that cover the spectrum:
• No question, cut 'em off! And no reconstruction! I don't need boobs to be a woman!
• No question, cut 'em off but I must have immediate reconstruction!
• I'd like to save as much of my breast(s) as possible, so maybe just lumpectomy?
• Lumpectomy and radiation
• I have no idea ... what do you think I should do?
• Am I going to die? Will I lose my hair?
Regrettably, the notion that I would ever be confronted with such a question never entered my mind. Hell, I was 34 years old and was just getting used to gray hair and bones that cracked in the morning. Breast cancer - any cancer - was something that just wasn't on my personal radar. That was for older folks to worry about. I wasn't even due for a mammogram (according to national healthcare professionals' recommendations) for another sixteen years or so. So, when the reality of breast cancer came about, I did what the doctors "recommended" ... we've covered that already, though. Now, I'll tell you what I should have done and what the doctors should have counseled me to have done. Emphasis on the words should have ...
My support team that day was comprised of friends Craig and Tammie. Together we waited in Dr. F's small office for a few minutes prior to his grand entrance. He barely looked up over the manilla folder containing my medical records and whatever notes he had in there. He started talking quickly and with a matter-of-fact tone.
"There are several doctors from the tumor board who were adamant that you need a double mastectomy. They think that is the best course of treatment for you," he said. "But, there are also some who think radiation and hormone therapy is best choice."
My decision had already been made in my heart and mind. The choice was clear, correct, and comforting. I knew that by "cutting 'em off" I would be on the path that gave me the greatest odds of long-term survival. That was all that mattered. My goal was (and remains, of course), to be on this Earth as long as necessary for me to accomplish whatever it is that the kids need to learn from me and until the time I'm truly needed elsewhere. Grandma, I'm sure, has a plate of my special oranges waiting for me, someday. (As much as I miss her and many wonderful other family members and dear friends who have passed, I'm content here on Earth for a while longer ... the Good Lord willing.)
The counsel of Dr. R combined with the opinions of many others "in the know" and, of course, my personal gut feeling, had started me down this path. It had become quite evident that with my specific case factors (we've covered them, but in case you've forgotten - young age, family history, bilateral diagnosis, invasive and still in my chest tumor), that the botched lumpectomy with radiation wasn't going to be my best course of treatment.
"What do you think, Dr. F?" I asked. The next words out of his mouth are soundly and permanently ingrained in my memory.
"I don't like to cut into people if I don't have to," he said.
At that moment, I knew my response would be critical to everything that would happen on my journey of fighting breast cancer. The oncologist's opinion that it wasn't necessary could have led me to doubt, question or back away from the decision I had made. I could wander back into the land of wondering what I should do and maybe this doctor does know best. Therein such thinking, however, I would not find the peace I had felt when I walked into his office.
"Well, I want a double mastectomy with immediate reconstruction," I replied. I was strong, confident and purposeful.
He answered back, "Well, it may not necessarily be" ... I cut him off.
"I've made the decision. This is what is best for me and my odds of beating this." I refused to back down. He had letters after his name that proved his intelligence and education, sure. However, I had my gut feeling, my Grandma's voice of reason, and a tumor in my chest fighting to get out all on my side. I didn't need doctorate letters after my name. This was my chest, my life and, therefore, my decision.
• No question, cut 'em off! And no reconstruction! I don't need boobs to be a woman!
• No question, cut 'em off but I must have immediate reconstruction!
• I'd like to save as much of my breast(s) as possible, so maybe just lumpectomy?
• Lumpectomy and radiation
• I have no idea ... what do you think I should do?
• Am I going to die? Will I lose my hair?
Regrettably, the notion that I would ever be confronted with such a question never entered my mind. Hell, I was 34 years old and was just getting used to gray hair and bones that cracked in the morning. Breast cancer - any cancer - was something that just wasn't on my personal radar. That was for older folks to worry about. I wasn't even due for a mammogram (according to national healthcare professionals' recommendations) for another sixteen years or so. So, when the reality of breast cancer came about, I did what the doctors "recommended" ... we've covered that already, though. Now, I'll tell you what I should have done and what the doctors should have counseled me to have done. Emphasis on the words should have ...
My support team that day was comprised of friends Craig and Tammie. Together we waited in Dr. F's small office for a few minutes prior to his grand entrance. He barely looked up over the manilla folder containing my medical records and whatever notes he had in there. He started talking quickly and with a matter-of-fact tone.
"There are several doctors from the tumor board who were adamant that you need a double mastectomy. They think that is the best course of treatment for you," he said. "But, there are also some who think radiation and hormone therapy is best choice."
My decision had already been made in my heart and mind. The choice was clear, correct, and comforting. I knew that by "cutting 'em off" I would be on the path that gave me the greatest odds of long-term survival. That was all that mattered. My goal was (and remains, of course), to be on this Earth as long as necessary for me to accomplish whatever it is that the kids need to learn from me and until the time I'm truly needed elsewhere. Grandma, I'm sure, has a plate of my special oranges waiting for me, someday. (As much as I miss her and many wonderful other family members and dear friends who have passed, I'm content here on Earth for a while longer ... the Good Lord willing.)
The counsel of Dr. R combined with the opinions of many others "in the know" and, of course, my personal gut feeling, had started me down this path. It had become quite evident that with my specific case factors (we've covered them, but in case you've forgotten - young age, family history, bilateral diagnosis, invasive and still in my chest tumor), that the botched lumpectomy with radiation wasn't going to be my best course of treatment.
"What do you think, Dr. F?" I asked. The next words out of his mouth are soundly and permanently ingrained in my memory.
"I don't like to cut into people if I don't have to," he said.
At that moment, I knew my response would be critical to everything that would happen on my journey of fighting breast cancer. The oncologist's opinion that it wasn't necessary could have led me to doubt, question or back away from the decision I had made. I could wander back into the land of wondering what I should do and maybe this doctor does know best. Therein such thinking, however, I would not find the peace I had felt when I walked into his office.
"Well, I want a double mastectomy with immediate reconstruction," I replied. I was strong, confident and purposeful.
He answered back, "Well, it may not necessarily be" ... I cut him off.
"I've made the decision. This is what is best for me and my odds of beating this." I refused to back down. He had letters after his name that proved his intelligence and education, sure. However, I had my gut feeling, my Grandma's voice of reason, and a tumor in my chest fighting to get out all on my side. I didn't need doctorate letters after my name. This was my chest, my life and, therefore, my decision.
Monday, April 1, 2013
15. Warrior in The General's Army
As a kid, my sisters and I were blessed to have extended family members close by and involved in our daily and weekly activities. (Most of the nearby family was on my father's side, as mother's side of the family primarily still lived in Scotland.) Aunt Marion (my father's eldest sister) and Uncle Jim (her husband) lived a couple miles away and were always just a phone call away. (Jim was our dentist, so we were guaranteed to see him at least twice a year, anyhow.) There were countless Sunday family dinners, birthday celebrations and every major holiday was spent together. Marion gave us our first jobs - housecleaning for her. At the time, I never realized that she really didn't need her house clean, for it was always immaculate. Likewise, Jim's dental office never really needed the cleaning he hired us to do each week. We did it, though, and were happy to have jobs outside the fast food industry. It wasn't until I became an aunt myself that I realized their reasons for hiring us were more about them wanting to help us learn the responsibilities of having a job and finding a way to help us financially as teenagers. I will always be grateful for these lessons, for they helped shape my character. (And, it was an added bonus to leave their home those workdays with one of Marion's freshly baked home-made chocolate cakes. Slice of heaven on Earth!)
My father's parents lived fifteen minutes away. Not a day went by when we didn't see or talk with them. Sometimes, we'd talk to them three, four times a day. The times Grandpa answered the phone were few and far between, but all he had to do was hit the buzzer under the kitchen counter by the phone and Grandma would pick up the other phone in the bedroom. (We counted often ... last count totaled twenty-two phones in their residence, including the garage and basement.) If we were sick, mom loaded us into the blue Caprice Classic station wagon and drove to her job as a bank loan officer in Point Loma. Grandpa would have parked their car in the same spot as always, and Grandma would greet us with open arms as we jumped from the Chevy wagon into their white, Crown Victoria (think police car). We would spend the day cuddled on the couch, watching game shows, soap operas and terrible daytime television. Grandma would make us whatever we wanted to eat and she always had a plate of my oranges prepared for me - sliced rounds with ample powdered sugar on top. Mostly, we snacked on stale ginger snaps, popcorn, miscellaneous treats of candy stashed throughout the house, and soda. They kept a separate refrigerator in the laundry room stocked with every brand of soda you could imagine, and Grandpa's stash of beer (non-alcoholic, of course). If we spent the night, we were awakened the next morning by the three beeps on the microwave indicating Grandpa's coffee was ready. Bacon soon followed.
Many summer days were spent the same way with our Grandparents. Sometimes Grandma would take us shopping. We'd go to Fashion Valley and have lunch at Broadway (old department store). We would order a hamburger and fries and sit in the green, plastic booths. Grandma only ever had a salad or soup. She would take us to Penny's (aka JC Penny's) for she thought it was the bees knees. She worked there many, many years ago. She'd buy us an outfit or new shoes or underwear, whatever we needed. We'd wash their cars and Grandpa would hand us a twenty. He wasn't much for hugs, but we knew the twenty was his own special kind of hug for us. They attended our school events, supported our interests, advised us on important matters. Grandpa recorded television shows for us back in the days of VCRs and VHS tapes. Grandpa also bought us our first typewriter and we thought we were so rad because it had correction ribbon. He encouraged us to read the newspaper daily and it's a habit I still have today. Grandma was always telling us to stand up straight and get the hair out of eyes. She liked our hair pulled back so she could see our faces. She had a witty, smart-ass sense of humor, but more so was recognized for her dictator type charm. She was known to many as simply The General. If she had an opinion on a matter, she had no reservation about telling us, or anyone, what was the proper position on said matter. Be it politics, the best game show, how to wear our hair, when and where we should vacation, etc., Grandma had the answers. She made the answers. She was the matriarch of the family, immediate and extended. She ran the show. If she said jump, you'd had better already been jumping by the time she finished her instruction.
She was tough as nails, yet sweet as sugar; strong as an ox while as gentle as a light spring breeze. Demanding, stubborn and direct, all while she loved unconditionally and shared her loaf of bread with every brother that she met. She was thunder and lightning, yet the harbor of love and shelter in the storm.
Random thoughts there, but my point is simply that our grandparents were an incredibly important part of our lives from day one. They helped mold us into the women we are today. We often wonder what Grandpa would think of today's society of high technology, politics, the internet and computers. He was the smartest, classiest man we ever knew. (Nephew Mitchell Cyrus is named after him and I tell you, Mitchell is his intellectual twin.) And he would be the first to tell you that he married the best woman on Earth.
I'm sure all grandparents tell each grandchild at some point or another that they are the favorite grandchild. It's their duty to not have favorites but to let each of us believe we are that favorite. And, I believe with all my heart that I was my Grandma's favorite. (Siblings & cousins - we can ask her when we see her next and confirm, k? Until then, this is my blog and, well, for the sake of the story, let me have this one for now.)
Grandma Greaves started to prepare for her death a good twenty-plus years before she would actually pass away. She would ask us to put our name on a post-it note or label and place it behind any materialistic item found in her home. She asked me once what I wanted when she was about to die. I wrote my post-it note and gave it to her. That note hung in her cupboard closet 'til the day she died. Today, it's in my possession. It reads: "When the time comes for my grandma and grandpa to die, I want them not to." She made the rules, I was certain she could make that happen.
I was very close to my Grandma. I loved her more than anything in the world, save for my mother and sports. We had a special bond that as I think about even today, nearly fifteen years after her death, was unique and special. Her death in July 1998 was the beginning of the worst summer of my life (Cruel Summer of 2009 gets its own category). However, on the ten year anniversary of her death, instead of focusing back on how tragic that summer had been, I decided to honor my Grandma in a way that meant something to me on a personal level. I got a tattoo. It's two sevens formed together (she died 7-7) to form a box with the words in the middle reading Love Never Fails.
Breast cancer wasn't something Dora's generation spoke of often or openly. Instead, it was rather taboo. I knew Grandma had survived breast cancer for she only had one breast. She wasn't embarrassed by it and quite honestly, I think her battle against breast cancer was remarkable. She was blessed with a loving, supportive family and had the love of her life holding her hand each and every step. Cy didn't care one ounce about the physical scars the cancer left. All that mattered was his wife was left here to live on.
"Cy and I have been very fortunate and greatly blessed in almost every way during our married life. I suppose our first frightening experience was Marion's birth. I suffered a severe hemorrhage and almost died. This was especially difficult for Cy, but he exercised his faith and we along with our families were very prayerful. The Lord blessed us and in a few months I was doing fine. At age 34 years, I had a mastectomy (cancer of the breast). This was a horrible, frightening experience. The operation was performed in Boise, Idaho, March 18th, 1942 (Gary's birthday) by Doctor Harold Nakes. It caused us much concern and worry. Marion was only eight years old, Doreen was five years old, and Gary was three years old. I didn't want to die and leave them for Cy or anyone else to raise. Again, we called upon the Lord to help us. It required a lot of faith, prayers, and understanding to make it through the next five years, as that was considered the most dangerous period. Again we were greatly blessed and I was permitted to live and raise our family. There is no way I can express my gratefulness to my Father in Heaven for this blessing." (Excerpt from Dora Greaves' journal)
So there I was, 34 years old, just like my Grandmother had been when she was diagnosed with breast cancer. I was feeling lost in the maze of doctors and uncertainty. The tornado of medical chaos and confusion was picking up steam and I was in its midst.
"Grandma? Can you hear me? I know you're there. You promised you'd always be here for me, even after you were gone," I muttered to the wind. "I don't know what I'm supposed to do. I'm confused. I don't want to die. I promised the kids I'd be around for a long, long time. Why aren't you here?"
I would have given anything to have her soft, delicate hands place themselves on my cheek or tuck my hair behind my ear. I craved her unique presence of simultaneous peace, love and feisty determination. I needed her strength, direction, advice. My childhood had taught me that when you are sick, you need Grandma.
She heard me. She spoke to me in the way she knew best - through her foundation of faith. The words of a hymn I had sang many times as child came to my mind:
I sang the song in my heart, for my voice frightens even me. But the tornado around me stopped. I felt an instant and distinct peace. Confusion, anger and fear were overcome by comfort, strength and a warrior's spirit. I knew what I had to do. It was as clear to me as the sky is blue after a storm. I had been sick ... and my Grandma's love for her grandchild comforted me. Love truly never fails.
"I hear you, Grandma. I hear you, " I whispered to the wind. I offered even a slight smirk.
August 19, 2009, I entered the office of Dr. F once again. I was no longer lost and weak. I was in control, (The General would be so proud) and I knew what needed to be done.
Peace, peace, be still.
My father's parents lived fifteen minutes away. Not a day went by when we didn't see or talk with them. Sometimes, we'd talk to them three, four times a day. The times Grandpa answered the phone were few and far between, but all he had to do was hit the buzzer under the kitchen counter by the phone and Grandma would pick up the other phone in the bedroom. (We counted often ... last count totaled twenty-two phones in their residence, including the garage and basement.) If we were sick, mom loaded us into the blue Caprice Classic station wagon and drove to her job as a bank loan officer in Point Loma. Grandpa would have parked their car in the same spot as always, and Grandma would greet us with open arms as we jumped from the Chevy wagon into their white, Crown Victoria (think police car). We would spend the day cuddled on the couch, watching game shows, soap operas and terrible daytime television. Grandma would make us whatever we wanted to eat and she always had a plate of my oranges prepared for me - sliced rounds with ample powdered sugar on top. Mostly, we snacked on stale ginger snaps, popcorn, miscellaneous treats of candy stashed throughout the house, and soda. They kept a separate refrigerator in the laundry room stocked with every brand of soda you could imagine, and Grandpa's stash of beer (non-alcoholic, of course). If we spent the night, we were awakened the next morning by the three beeps on the microwave indicating Grandpa's coffee was ready. Bacon soon followed.
Many summer days were spent the same way with our Grandparents. Sometimes Grandma would take us shopping. We'd go to Fashion Valley and have lunch at Broadway (old department store). We would order a hamburger and fries and sit in the green, plastic booths. Grandma only ever had a salad or soup. She would take us to Penny's (aka JC Penny's) for she thought it was the bees knees. She worked there many, many years ago. She'd buy us an outfit or new shoes or underwear, whatever we needed. We'd wash their cars and Grandpa would hand us a twenty. He wasn't much for hugs, but we knew the twenty was his own special kind of hug for us. They attended our school events, supported our interests, advised us on important matters. Grandpa recorded television shows for us back in the days of VCRs and VHS tapes. Grandpa also bought us our first typewriter and we thought we were so rad because it had correction ribbon. He encouraged us to read the newspaper daily and it's a habit I still have today. Grandma was always telling us to stand up straight and get the hair out of eyes. She liked our hair pulled back so she could see our faces. She had a witty, smart-ass sense of humor, but more so was recognized for her dictator type charm. She was known to many as simply The General. If she had an opinion on a matter, she had no reservation about telling us, or anyone, what was the proper position on said matter. Be it politics, the best game show, how to wear our hair, when and where we should vacation, etc., Grandma had the answers. She made the answers. She was the matriarch of the family, immediate and extended. She ran the show. If she said jump, you'd had better already been jumping by the time she finished her instruction.
She was tough as nails, yet sweet as sugar; strong as an ox while as gentle as a light spring breeze. Demanding, stubborn and direct, all while she loved unconditionally and shared her loaf of bread with every brother that she met. She was thunder and lightning, yet the harbor of love and shelter in the storm.
Random thoughts there, but my point is simply that our grandparents were an incredibly important part of our lives from day one. They helped mold us into the women we are today. We often wonder what Grandpa would think of today's society of high technology, politics, the internet and computers. He was the smartest, classiest man we ever knew. (Nephew Mitchell Cyrus is named after him and I tell you, Mitchell is his intellectual twin.) And he would be the first to tell you that he married the best woman on Earth.
I'm sure all grandparents tell each grandchild at some point or another that they are the favorite grandchild. It's their duty to not have favorites but to let each of us believe we are that favorite. And, I believe with all my heart that I was my Grandma's favorite. (Siblings & cousins - we can ask her when we see her next and confirm, k? Until then, this is my blog and, well, for the sake of the story, let me have this one for now.)
Grandma Greaves started to prepare for her death a good twenty-plus years before she would actually pass away. She would ask us to put our name on a post-it note or label and place it behind any materialistic item found in her home. She asked me once what I wanted when she was about to die. I wrote my post-it note and gave it to her. That note hung in her cupboard closet 'til the day she died. Today, it's in my possession. It reads: "When the time comes for my grandma and grandpa to die, I want them not to." She made the rules, I was certain she could make that happen.
I was very close to my Grandma. I loved her more than anything in the world, save for my mother and sports. We had a special bond that as I think about even today, nearly fifteen years after her death, was unique and special. Her death in July 1998 was the beginning of the worst summer of my life (Cruel Summer of 2009 gets its own category). However, on the ten year anniversary of her death, instead of focusing back on how tragic that summer had been, I decided to honor my Grandma in a way that meant something to me on a personal level. I got a tattoo. It's two sevens formed together (she died 7-7) to form a box with the words in the middle reading Love Never Fails.
Breast cancer wasn't something Dora's generation spoke of often or openly. Instead, it was rather taboo. I knew Grandma had survived breast cancer for she only had one breast. She wasn't embarrassed by it and quite honestly, I think her battle against breast cancer was remarkable. She was blessed with a loving, supportive family and had the love of her life holding her hand each and every step. Cy didn't care one ounce about the physical scars the cancer left. All that mattered was his wife was left here to live on.
"Cy and I have been very fortunate and greatly blessed in almost every way during our married life. I suppose our first frightening experience was Marion's birth. I suffered a severe hemorrhage and almost died. This was especially difficult for Cy, but he exercised his faith and we along with our families were very prayerful. The Lord blessed us and in a few months I was doing fine. At age 34 years, I had a mastectomy (cancer of the breast). This was a horrible, frightening experience. The operation was performed in Boise, Idaho, March 18th, 1942 (Gary's birthday) by Doctor Harold Nakes. It caused us much concern and worry. Marion was only eight years old, Doreen was five years old, and Gary was three years old. I didn't want to die and leave them for Cy or anyone else to raise. Again, we called upon the Lord to help us. It required a lot of faith, prayers, and understanding to make it through the next five years, as that was considered the most dangerous period. Again we were greatly blessed and I was permitted to live and raise our family. There is no way I can express my gratefulness to my Father in Heaven for this blessing." (Excerpt from Dora Greaves' journal)
So there I was, 34 years old, just like my Grandmother had been when she was diagnosed with breast cancer. I was feeling lost in the maze of doctors and uncertainty. The tornado of medical chaos and confusion was picking up steam and I was in its midst.
"Grandma? Can you hear me? I know you're there. You promised you'd always be here for me, even after you were gone," I muttered to the wind. "I don't know what I'm supposed to do. I'm confused. I don't want to die. I promised the kids I'd be around for a long, long time. Why aren't you here?"
I would have given anything to have her soft, delicate hands place themselves on my cheek or tuck my hair behind my ear. I craved her unique presence of simultaneous peace, love and feisty determination. I needed her strength, direction, advice. My childhood had taught me that when you are sick, you need Grandma.
She heard me. She spoke to me in the way she knew best - through her foundation of faith. The words of a hymn I had sang many times as child came to my mind:
The winds and the waves shall obey thy will:
Peace, be still.
Whether the wrath of the storm-tossed sea
Or demons or men or whatever it be,
No waters can swallow the ship where lies
The Master of ocean and earth and skies.
They all shall sweetly obey thy will:
Peace, be still; peace, be still.
They all shall sweetly obey thy will:
Peace, peace, be still
(Master, the Tempest is Raging - LDS Hymns)
I sang the song in my heart, for my voice frightens even me. But the tornado around me stopped. I felt an instant and distinct peace. Confusion, anger and fear were overcome by comfort, strength and a warrior's spirit. I knew what I had to do. It was as clear to me as the sky is blue after a storm. I had been sick ... and my Grandma's love for her grandchild comforted me. Love truly never fails.
"I hear you, Grandma. I hear you, " I whispered to the wind. I offered even a slight smirk.
August 19, 2009, I entered the office of Dr. F once again. I was no longer lost and weak. I was in control, (The General would be so proud) and I knew what needed to be done.
Peace, peace, be still.
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| Safe in Grandma's arms |
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| Mom, Caren, me and Grandma |
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| Oh how I adored my Grandma! |
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| The world's best Grandparents - Dora & Cy |
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| My beloved Grandma and me (Don't laugh or comment on my hair, it was the early 90s!) |
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