The only good thing about recovering from major surgery (besides the obvious of being cancer free) was being able to stay in the warm, welcoming embrace and home of the Graham family. Ken and Anne, the in-laws of my dear friend Ann-Christel, graciously offered me their guest quarters for my recovery stay. (Their house was only minutes from the hospital and would be much more convenient for me than driving the two hours back to Sacramento the day after major surgery.) Anne's a nurse, but even more comforting to me, she's a mom and grandma. She made sure I had everything I could possibly need, including written instructions on how to operate the remote control for the television.
It was a luxury to be able to rest in a quiet and comfortable environment and not have to worry about the slightest thing. My sister, Cheryl, and Anne spent a great deal of time together, as I slept the majority of each day. They made meals, watched television, talked, and just hung out together. They bonded.
Together, they kept me in the lap of luxury. Well, as much luxury as one can expect to have when you're wearing a tube top & pajama bottoms, have drains hanging out of the sides of your chest and plastic containers (collecting the excess fluid) safety-pinned to your tube top and you spend your entire day in bed. Even so, I didn't want for a thing. They made sure I had my water bottle filled with ice water at all times (gotta wash those drugs outta your system). If I needed my pillow adjusted, they did it for me. Cheryl and Anne made sure I took my medications on schedule, several times each day. Anne watched over and helped Cheryl as she learned how to clean the drains and measure the excess fluid accumulation. They asked me repeatedly if I wanted anything to eat, but the thought of exerting any energy to even chew food sounded like too much effort for my weakened body. Ann-Christel came by to visit at one point and I think I fell asleep while she was talking to me. She graciously and kindly let me sleep. I was disappointed in myself because I desperately wanted to visit, talk, catch up on the years of our lives we had missed. Instead, I fell asleep.
Surgery had been on Monday and Tuesday afternoon I was sent home (Grahams') to recover. I wasn't feeling too terrible Tuesday evening, all that being relative of course. Anne warned me that the next day would be the worst. Not to anyone's surprise, she was right.
I had been prescribed Vicodin to help relieve my pain during recovery but was also given 800mg prescription Ibuprofen to take between the doses of Vicodin. Wednesday morning found me feeling somewhat better, though temporarily. Food sounded somewhat good. I joined the family at the dinner table and thought, hey, maybe I'm going to be okay and on the mend here. Woo hoo!
Two bites of mashed potatoes later, I gingerly yet as quickly as I could, excused myself to my guest quarters (fortunately just down the hallway). The two bites of food didn't stay with me long. Now, imagine the pain of heaving your recently-sliced-open-and-sewn-together chest as you throw up kneeling over a toilet. I would have cried, but that would have just hurt even more. Cheryl came in to check on me just as I was exiting the restroom to wash up. Anne followed moments later. Together, they helped me through the next wave of sickness - Cheryl holding my hair out of my face and Anne holding the bowl in front of me as I vomited again. Truly not one of my proudest moments. I apologized repeatedly for them having to be there through that experience and they both just comforted me with words of love and compassion. They understood there was absolutely nothing I could have done to change the course of events and that I was desperate for their help in getting through it. I begged Cheryl (as I did many, many times over the week) to make sure I was clean. She gave me sponge-baths as I sat in the chair in the bathroom. I was obsessed with being clean and did not want to smell badly. Aw, a sister's love and compassion are priceless.
Note to self: Vicodin sucks. Anne was the one who suggested that it could be the Vicodin taking its toll on my stomach. We elected to try switching just to the Ibuprofen from then on. Thankfully, that one episode of being sick was the only episode and the Ibuprofen worked well enough at keeping my pain at bay. I think I eventually managed a piece of toast and was full before finishing it.
Later that evening (perhaps the next day, I can't recall), Anne's daughter, Kate, came by to visit her parents. While Kate's nursing experience was with babies and critical heart conditions, drains were no stranger for her. She came right into the guest room and helped clean the drains hanging from my chest. It's an odd first introduction, I admit, but hell, sometimes you can't help when and where you meet wonderful people. And Kate, well, she's definitely good people!
These people didn't know me before all of this. They simply accepted me as their daughter-in-law's friend, knew I needed help and that was all they needed to know about me. They opened their home and hearts to a stranger and gave her the most incredible gift ... extended family.
I asked Cheryl to recap for me what she recalls about those days at the Graham's home. This is her email reply to me:
"You slept and watched TV and Anne and I talked in the living room. I
played with the little grandson, I think his name was Parker? She told
me about her dad's military service and that the medals on the wall were
all his and that it represented a lot of sacrifice. We watched
recorded episodes of Dancing with the Stars or So You Think You Can Dance. We talked and talked. I remember you were very sick from the
meds and Craig and I went to the store to get you a lot of meds. He
seemed worried. I held your hair while Anne held the bowl for you to
throw up in. I had to wake you to take meds and kept track of them on
my hand because otherwise I would have lost my record keeping. I was
tired! Um, you ate dry toast one time. Anne told me that during
difficult situations you can never change the wind, you can only adjust
your sails. We would lay in bed together and watch TV during the
day...if you fell asleep doing so, I would leave and go be with Anne. I
washed your face and top part of your body so you'd feel clean (always a
big thing with us isn't it?!) Um, what else...their home was
beautiful and felt so homey to me. Even though we had never met them, I
felt like we had known them all our lives and I remember loving that at
such a difficult time. I loved being with them. Ken was amazing and I
loved him instantly. He has remained on my mind ever since as being
one of the classiest, kind, generous, genuine men I've EVER met. I
adore him to this day. I feel the same about Anne. I remember their family dinners each night. They all talked and seemed
like such a wonderful family. They made me feel so included and like I
was part of the family."
Like I said, we were with family. I had gained an additional set of parents ... Anne and I chose Momca (Mom+California) and Ken, well, he's Dadca. I'm forever in their debt and gratitude. I strive to pay forward their kindness, if even only in a fraction of the magnitude they showed me.
Tuesday, July 16, 2013
Saturday, June 29, 2013
We Interrupt Our Regularly Scheduled Broadcast ...
Time for a brief intermission, folks. Get up, stretch your legs, go for a walk. Come back and read this entry. I thought I'd share with you some of the other things happening in my life recently. And then, I promise to get back to recounting the adventure I like to call "beating the hell out of breast cancer".
I travel. I travel a lot. I have to. My passion in life is my family and they don't live anywhere near me. I'm on a plane maybe once a month, maybe every six weeks. Lately, however, I have been living out of my suitcase and have spent more hours in an airplane and/or airports than I have in my own bed!
For those of you new to my blog (thank you for visiting), you'll come to learn I love photographs of life's moments ... documents of memories-made and cherished experiences. Here are a few random pictures from my last couple months of travel and miscellaneous moments. Enjoy!
Late May found me in Phoenix visiting family ...
The following weekend, I flew to Santa Ana to attend my half-sister's (Cindy) wedding. Oh, and I met her that day for the first time ever. It's a long story, but one that I am honored and thrilled to say is finally finding its happy forever after ...
June 7-9, found me in Billings, Montana for my youngest niece's (Bronwyn) baptism. Despite knowing I'd see all the family three days later (Hawaii trip), it was never an option for me to miss Bronwyn's baptism. I promised each of the kids I'd be there on their special day and I'm honored to say thus far I am six-for-eight ... two more to go.
So, I returned home to Sacramento Monday and Tuesday left for Hawaii. I met my sister, Caren, and her family at LAX and we set off to Oahu for 8 days. Talk about paradise! It was an incredible vacation and I loved every moment of the time spent with my sister, brother-in-law Todd and the five kids. There are too many pictures to post here, but I'll show you a few of them. (Check my FB page for the larger collection, if you dare.)
I returned home late on a Wednesday night, went to work the following day and that evening attended Logan's preschool graduation. Friends are often the family we choose for ourselves and never has this been more true than with my Sacramento-Family, the Freeland Clan. I'm so blessed to be part of their extended family.
Saturday, June 22nd, I spent the day volunteering at the annual Albie Puttin' Pub Crawl for a local breast cancer awareness and advocacy group that is incredibly important to me. This event is always a blast and I thank my sweet friend and sister-survivor-warrior, Tammie, for helping again this year.
Before I leave you today, let me share one last photo with you. I took this back in May in Scotland and I love it for one reason ... it's a reminder to me (as the amateur photographer I am) to always find what's important and focus on that and that alone. For me, my life's focus is my family, my friends, the kids ... love never fails, folks.
We will now return to our regularly scheduled programming ... the journey of my breast cancer battle shall continue on in my next post. Stay tuned.
I travel. I travel a lot. I have to. My passion in life is my family and they don't live anywhere near me. I'm on a plane maybe once a month, maybe every six weeks. Lately, however, I have been living out of my suitcase and have spent more hours in an airplane and/or airports than I have in my own bed!
For those of you new to my blog (thank you for visiting), you'll come to learn I love photographs of life's moments ... documents of memories-made and cherished experiences. Here are a few random pictures from my last couple months of travel and miscellaneous moments. Enjoy!
Late May found me in Phoenix visiting family ...
 |
| Taking a break from swimming with nephew Charlie. |
 |
| Ready, set, go! Marshall, Carson & Charlie having fun! |
 | |||||
| Three of my adored nephews ... an evening at the park. |
 |
| I was honored to take photos of Elder Guy Soper, a dear family friend, just weeks before he left Phoenix for the MTC and then his mission for the LDS church. Guess where he was called to serve? Yep, Sacramento. :) |
The following weekend, I flew to Santa Ana to attend my half-sister's (Cindy) wedding. Oh, and I met her that day for the first time ever. It's a long story, but one that I am honored and thrilled to say is finally finding its happy forever after ...
 |
| I had tears in my eyes as I watched my eldest sister walk down the aisle and make a quick glance and smile in my direction. Isn't she the most beautiful bride? |
 |
| Three of the six sisters here ... Cindy, Kristie and me. Family love is unconditional. |
June 7-9, found me in Billings, Montana for my youngest niece's (Bronwyn) baptism. Despite knowing I'd see all the family three days later (Hawaii trip), it was never an option for me to miss Bronwyn's baptism. I promised each of the kids I'd be there on their special day and I'm honored to say thus far I am six-for-eight ... two more to go.
 |
| Andrew, 16, baptized his youngest sister. |
 |
| A quick hug with auntie ... love you, Sweet Pea! |
 |
| Smile! |
 |
| My "test subjects" .. aka, my secret term for convincing them to help me find just the right lighting/poses for a photo shoot when all I really wanted was just a cute picture of these two. Shhhh, don't tell them. :) |
So, I returned home to Sacramento Monday and Tuesday left for Hawaii. I met my sister, Caren, and her family at LAX and we set off to Oahu for 8 days. Talk about paradise! It was an incredible vacation and I loved every moment of the time spent with my sister, brother-in-law Todd and the five kids. There are too many pictures to post here, but I'll show you a few of them. (Check my FB page for the larger collection, if you dare.)
 |
| First time snorkeling ... yes, I accept the fact I look like a complete dork here, but it was a fabulous experience and what a joy it was to see the sea turtles with the kids. |
 |
| Hanauma Bay ... beautiful! |
 |
| Caught the sunset with my nephew, Andrew. Can't believe he is now a senior! |
 |
| With my beautiful and amazing sister, Caren. |
 |
| Shell hunting on the beach with niece Bronwyn. |
 |
| Is a caption really necessary for this?? |
 |
| What a view of BYU Hawaii! |
 |
| Proof that I did, indeed, get in the water and attempt to boogie-board. |
 |
| My sister and her family ... love you guys! (Andrew refused to let me take any good photos of him smiling until I showed him up in the water, boogie boarding. Can you tell from his expression?!) |
 |
| The kids all went into the pond under the falls at Waimea. |
 |
| Building a sand castle. |
 |
| The Montana kids get introduced to the big ocean! |
 |
| Niece Avery, always smiling, stops to say cheese for me! |
 |
| Mitchell & Callum as we toured Pearl Harbor. |
 |
| Touring Pearl Harbor was incredible. The loss, sacrifices and yet ultimate survival and resilience touched my soul deeply. |
I returned home late on a Wednesday night, went to work the following day and that evening attended Logan's preschool graduation. Friends are often the family we choose for ourselves and never has this been more true than with my Sacramento-Family, the Freeland Clan. I'm so blessed to be part of their extended family.
 |
| Julia and Logan are all smiles after graduation. |
 | |||
| That's our Logan ... his smile will melt your heart! |
Saturday, June 22nd, I spent the day volunteering at the annual Albie Puttin' Pub Crawl for a local breast cancer awareness and advocacy group that is incredibly important to me. This event is always a blast and I thank my sweet friend and sister-survivor-warrior, Tammie, for helping again this year.
 |
| Setting up before the golfers come by ... |
Before I leave you today, let me share one last photo with you. I took this back in May in Scotland and I love it for one reason ... it's a reminder to me (as the amateur photographer I am) to always find what's important and focus on that and that alone. For me, my life's focus is my family, my friends, the kids ... love never fails, folks.
We will now return to our regularly scheduled programming ... the journey of my breast cancer battle shall continue on in my next post. Stay tuned.
Friday, June 7, 2013
21. Recovery
At one point during the night, I buzzed for the nurse. I felt like I needed to use the restroom but was confused because the catheter was meant to take care of that for me (thus saving me from having to get out of bed mere hours after having my chest torn open).
"Let's take a look," the nurse said. "Oh, yeah, it's just tangled." And just like that, that "need" disappeared. My relief in knowing I wouldn't have to get out of bed just yet, was short lived. The nurses told me I had to get up and try standing, maybe even walking a bit. They couldn't be serious, I thought to myself. But, oh yes, they were indeed serious.
Try this at home ... get flat on your back on your bed ... try to swing your legs over to the edge, bring your upper torso upright and try to stand up ... seems simple enough, right? Try having to do that while attempting to protect every chest muscle possible. Torture. Pain. Impossible. Where's the morphine push button?!
The nurse was ever so patient with me. She reminded me to take it slowly. I didn't listen (I have been accused of being somewhat stubborn at times) and I immediately felt very light headed. Slow down, Cherí, easy now. I eventually made it to a position resembling upright, though remained somewhat hunched over instinctively protecting my ripped apart chest. I took a few steps and was congratulated by the nurse. Job well done. Whew, back to bed I went. That was exhausting!
Cheryl and Craig visited and brought me my cherished Starbucks. I was so excited to see the familiar white cup with the green logo on it! (Admit it, you get that way, too.) Sadly, I wasn't feeling like eating or drinking much and coffee just sounded like it would rip to shreds my stomach, which was completely empty. The beautiful cup sat on the tray, untouched.
Another visitor stopped by and, despite being still somewhat drugged up, I was completely mortified. In walked the hospital CEO, Mr. Ken Graham, to say hello and check in on me. He was the picture of elegance, prestige, professionalism, dressed in a suit and wearing his best accessory - a warming, contagious smile. I knew I looked a bit like death-warmed-over, I was in a hospital gown with green socks up to my knees, those pressure boots on, not an ounce of makeup (not even lip gloss!), my hair strands were fighting with one another, and I had drains sticking out of the sides of my body! What a first impression I must have made. The moment he smiled at me and said good morning, nothing else mattered. This was the man who, along with his family, played an enormous role in helping to save my life. I would have hugged him if I could have gotten myself out of bed. He stayed but a short minute or two, wished me all the best in my recovery, said to let him know I needed anything at all, and then was off. His smile lingered with me, though.
My doctors both stopped by to check in on me. I needed their approval before I could be released from the hospital. They both seemed quite pleased with their work and my physical response to the surgery and agreed I could be on my way. Before Dr. Singhal left the room, I asked her one question.
"Did you get it all out?" I asked of my surgical-oncologist, referring to not only the remaining breast tissue but also the cancer the general surgeon had not been able to remove from my chest wall during the double lumpectomy. There was no delay, no thought, no question in her mind as to how to respond.
"Of course. That's my job," she confidently assured me. "That's what I'm trained to do." I nodded my head and smiled. I knew in that moment just why I had fought so hard to have her be allowed to treat me. That day, she saved my life.
"Let's take a look," the nurse said. "Oh, yeah, it's just tangled." And just like that, that "need" disappeared. My relief in knowing I wouldn't have to get out of bed just yet, was short lived. The nurses told me I had to get up and try standing, maybe even walking a bit. They couldn't be serious, I thought to myself. But, oh yes, they were indeed serious.
Try this at home ... get flat on your back on your bed ... try to swing your legs over to the edge, bring your upper torso upright and try to stand up ... seems simple enough, right? Try having to do that while attempting to protect every chest muscle possible. Torture. Pain. Impossible. Where's the morphine push button?!
The nurse was ever so patient with me. She reminded me to take it slowly. I didn't listen (I have been accused of being somewhat stubborn at times) and I immediately felt very light headed. Slow down, Cherí, easy now. I eventually made it to a position resembling upright, though remained somewhat hunched over instinctively protecting my ripped apart chest. I took a few steps and was congratulated by the nurse. Job well done. Whew, back to bed I went. That was exhausting!
Cheryl and Craig visited and brought me my cherished Starbucks. I was so excited to see the familiar white cup with the green logo on it! (Admit it, you get that way, too.) Sadly, I wasn't feeling like eating or drinking much and coffee just sounded like it would rip to shreds my stomach, which was completely empty. The beautiful cup sat on the tray, untouched.
Another visitor stopped by and, despite being still somewhat drugged up, I was completely mortified. In walked the hospital CEO, Mr. Ken Graham, to say hello and check in on me. He was the picture of elegance, prestige, professionalism, dressed in a suit and wearing his best accessory - a warming, contagious smile. I knew I looked a bit like death-warmed-over, I was in a hospital gown with green socks up to my knees, those pressure boots on, not an ounce of makeup (not even lip gloss!), my hair strands were fighting with one another, and I had drains sticking out of the sides of my body! What a first impression I must have made. The moment he smiled at me and said good morning, nothing else mattered. This was the man who, along with his family, played an enormous role in helping to save my life. I would have hugged him if I could have gotten myself out of bed. He stayed but a short minute or two, wished me all the best in my recovery, said to let him know I needed anything at all, and then was off. His smile lingered with me, though.
My doctors both stopped by to check in on me. I needed their approval before I could be released from the hospital. They both seemed quite pleased with their work and my physical response to the surgery and agreed I could be on my way. Before Dr. Singhal left the room, I asked her one question.
"Did you get it all out?" I asked of my surgical-oncologist, referring to not only the remaining breast tissue but also the cancer the general surgeon had not been able to remove from my chest wall during the double lumpectomy. There was no delay, no thought, no question in her mind as to how to respond.
"Of course. That's my job," she confidently assured me. "That's what I'm trained to do." I nodded my head and smiled. I knew in that moment just why I had fought so hard to have her be allowed to treat me. That day, she saved my life.
** Below is a photo taken the day after the double mastectomy. It shows my chest with the first stages of implants, along with the scars and drains. It's graphic, so consider yourself warned. **
Tuesday, May 21, 2013
20. Let's Do This!
We stopped by my office that Monday morning so I could introduce and proudly show-off my little sister to my office coworkers. I was happy she could finally put faces to the names of people she had heard so much about for so many years. I felt like an elementary school kid taking my parent to show-and-tell or open house night. Soon enough, though, the time came for us to start the two hour drive to Mountain View. It was surgery day...finally!
Cheryl and I headed out in my Honda Pilot, and Craig followed behind us in his Yukon. (Cheryl and I would be staying in Mountain View for the week and thus needed a car to make the return trip. Craig wouldn't be staying ... he felt he needed to be at work.) I drove all the way to West Sacramento before realizing it would be best if Cheryl drove. I was already antsy about emails and texts to which I needed to respond. We pulled over and Cheryl took over as driver so I could safely text and email. I usually quickly fall asleep while a passenger in a car but I knew I couldn't do that then; Cheryl had no clue where to go. I had to be navigator.
We pulled into the hospital parking lot, parked the car, grabbed our belongings and headed inside. My wardrobe that day consisted of black lounge pants, a tank top and a zip-up sweatshirt. (This wasn't my first rodeo ... I knew the appropriate attire.) After registration, paying my hospital co-pay and getting my admittance bracelet, I was taken to a pre-op staging room, Cheryl along with me, and instructed to change into the hospital gown. (Those things suck. I'm just sayin'. But the ugly green socks with the sticky soles, well, those were awesome ... cozy and safe.) All my personal belongings were stored in a plastic bag given to us by hospital. I kept my cell phone with me. I refused to let it go until the very last possible moment. (Addiction? Hmmm...) The nurse was very sweet and comforting as she took my vitals and got my paperwork all set for me. I signed here and there agreeing that yes, indeed, I wanted a double mastectomy with immediate reconstruction in the way of spacers, blah blah blah. They are quite thorough in confirming you do want the surgery before they begin! This was already an entirely different (aka: better) experience than the lumpectomy a few months back. I felt I was in the hands of professionals and I had no fear, anxiety or hesitation about the surgery at hand.
Eventually Craig was allowed in to visit. He and Cheryl sat with me and we talked with Dr. Singhal when she came by for her pre-op visit. I asked her, "How long is the surgery going to take?"
"My part, well, maybe 45 minutes," she said quite casually. Surgery was slated for about five hours so her part of taking off my breasts and making me cancer-free only taking 45 minutes made me wonder a bit. But then, I realized that the super hard part of this whole procedure was Dr. Fazilat's job of reconstructing my breasts. I wanted the girls to look as good as possible, so I said to him (in my mind), take all the time you want, Doc. Heck, I'd be asleep and wouldn't even know how long it took him.
Dr. Singhal had to sign-off on my chest - literally. With the purple Sharpie, she initialed each breast ... the in-surgery check list item indicating that yes, this is me, these are my breasts and she is to cut them off.
After her visit, Dr. Fazilat came by and had his turn with the purple Sharpie. I remember standing there, facing him, gown wide open exposing the girls and him sitting on the stool, drawing all over my chest. Cut here, lift here, make this even here, center this, etc. - I looked like a piece of construction paper a toddler had scribbled all over.
He leaned back a bit, studying a mole I had under my breasts. "You ever have this looked at?" he asked. Nope. Should I have?
He circled it and said he'd take it off while were in surgery. Better safe than sorry. The artist, satisfied that his masterpiece had been drawn and sketched perfectly, signed my chest and declared we were ready for surgery.
I was wheeled down to the main pre-op room, Cheryl and Craig walking along beside me. I was only allowed one person in the anesthesia room and I elected to have Craig come in with me. He knew the pain I suffered from the lumpectomy and he was there to help me convey my concerns to the anesthesiologist of this happening again. The anesthesiologist could see my fear (remember the 10 on the pain scale I encountered when in recovery from the lumpectomy?!) and he was, quite honestly, totally surprised and shocked to hear that I had experienced such pain before. He assured me that would not happen that day and he said the other hospital probably just failed to add pain killers to the IV. (Yep, think they did.) This doctor was kind and professional and put my mind at ease.
And just like that, it was time. The nurses covered me with blankets and I was wheeled into surgery by Dr. Singhal (and accompanying nurses). It was a humbling experience to have my doctor personally escort me into surgery. I felt safe, secure and I knew I had the best of the best on my team.
The operating room was very cold. It was so strange to be awake inside an operating room. (Pretty darn similar to the Grey's Anatomy set...) I was shifted from the wheeled cart onto the incredibly thin operating table. It couldn't have been more than 18" wide. I thought I was going to fall off the table! Talk about an experience that makes you feel fat! But soon enough, Dr. Singhal and the anesthesiologist told me to start counting back from 10. Last I recall, I said nine and was out.
I remember waking up in the recovery room. I was groggy, definitely, but I didn't care. I was essentially pain-free and relatively comfortable. The experience was a complete 180 from my previous surgery and I couldn't have been more grateful! I hadn't even known they inserted a catheter (which, as bad as they can be, especially when the remove them, shiver, shiver, is an incredible device ... what a relief to not have to get up to go to the bathroom)! I had the devices again on my legs to help the circulation and I could hear the hum of the machine. I had my El Camino water bottle (incredible water bottle by the way) next to me, filled with ice and water. Cheryl and Craig came by to visit. They didn't stay long; I was tired. I'd talk with them in the morning when they'd be back to visit (and with my Starbucks grande, sugar-free vanilla, soy, skinny mocha in hand).
I fell asleep ... cancer free at last.
Cheryl and I headed out in my Honda Pilot, and Craig followed behind us in his Yukon. (Cheryl and I would be staying in Mountain View for the week and thus needed a car to make the return trip. Craig wouldn't be staying ... he felt he needed to be at work.) I drove all the way to West Sacramento before realizing it would be best if Cheryl drove. I was already antsy about emails and texts to which I needed to respond. We pulled over and Cheryl took over as driver so I could safely text and email. I usually quickly fall asleep while a passenger in a car but I knew I couldn't do that then; Cheryl had no clue where to go. I had to be navigator.
We pulled into the hospital parking lot, parked the car, grabbed our belongings and headed inside. My wardrobe that day consisted of black lounge pants, a tank top and a zip-up sweatshirt. (This wasn't my first rodeo ... I knew the appropriate attire.) After registration, paying my hospital co-pay and getting my admittance bracelet, I was taken to a pre-op staging room, Cheryl along with me, and instructed to change into the hospital gown. (Those things suck. I'm just sayin'. But the ugly green socks with the sticky soles, well, those were awesome ... cozy and safe.) All my personal belongings were stored in a plastic bag given to us by hospital. I kept my cell phone with me. I refused to let it go until the very last possible moment. (Addiction? Hmmm...) The nurse was very sweet and comforting as she took my vitals and got my paperwork all set for me. I signed here and there agreeing that yes, indeed, I wanted a double mastectomy with immediate reconstruction in the way of spacers, blah blah blah. They are quite thorough in confirming you do want the surgery before they begin! This was already an entirely different (aka: better) experience than the lumpectomy a few months back. I felt I was in the hands of professionals and I had no fear, anxiety or hesitation about the surgery at hand.
Eventually Craig was allowed in to visit. He and Cheryl sat with me and we talked with Dr. Singhal when she came by for her pre-op visit. I asked her, "How long is the surgery going to take?"
"My part, well, maybe 45 minutes," she said quite casually. Surgery was slated for about five hours so her part of taking off my breasts and making me cancer-free only taking 45 minutes made me wonder a bit. But then, I realized that the super hard part of this whole procedure was Dr. Fazilat's job of reconstructing my breasts. I wanted the girls to look as good as possible, so I said to him (in my mind), take all the time you want, Doc. Heck, I'd be asleep and wouldn't even know how long it took him.
Dr. Singhal had to sign-off on my chest - literally. With the purple Sharpie, she initialed each breast ... the in-surgery check list item indicating that yes, this is me, these are my breasts and she is to cut them off.
After her visit, Dr. Fazilat came by and had his turn with the purple Sharpie. I remember standing there, facing him, gown wide open exposing the girls and him sitting on the stool, drawing all over my chest. Cut here, lift here, make this even here, center this, etc. - I looked like a piece of construction paper a toddler had scribbled all over.
He leaned back a bit, studying a mole I had under my breasts. "You ever have this looked at?" he asked. Nope. Should I have?
He circled it and said he'd take it off while were in surgery. Better safe than sorry. The artist, satisfied that his masterpiece had been drawn and sketched perfectly, signed my chest and declared we were ready for surgery.
I was wheeled down to the main pre-op room, Cheryl and Craig walking along beside me. I was only allowed one person in the anesthesia room and I elected to have Craig come in with me. He knew the pain I suffered from the lumpectomy and he was there to help me convey my concerns to the anesthesiologist of this happening again. The anesthesiologist could see my fear (remember the 10 on the pain scale I encountered when in recovery from the lumpectomy?!) and he was, quite honestly, totally surprised and shocked to hear that I had experienced such pain before. He assured me that would not happen that day and he said the other hospital probably just failed to add pain killers to the IV. (Yep, think they did.) This doctor was kind and professional and put my mind at ease.
And just like that, it was time. The nurses covered me with blankets and I was wheeled into surgery by Dr. Singhal (and accompanying nurses). It was a humbling experience to have my doctor personally escort me into surgery. I felt safe, secure and I knew I had the best of the best on my team.
The operating room was very cold. It was so strange to be awake inside an operating room. (Pretty darn similar to the Grey's Anatomy set...) I was shifted from the wheeled cart onto the incredibly thin operating table. It couldn't have been more than 18" wide. I thought I was going to fall off the table! Talk about an experience that makes you feel fat! But soon enough, Dr. Singhal and the anesthesiologist told me to start counting back from 10. Last I recall, I said nine and was out.
I remember waking up in the recovery room. I was groggy, definitely, but I didn't care. I was essentially pain-free and relatively comfortable. The experience was a complete 180 from my previous surgery and I couldn't have been more grateful! I hadn't even known they inserted a catheter (which, as bad as they can be, especially when the remove them, shiver, shiver, is an incredible device ... what a relief to not have to get up to go to the bathroom)! I had the devices again on my legs to help the circulation and I could hear the hum of the machine. I had my El Camino water bottle (incredible water bottle by the way) next to me, filled with ice and water. Cheryl and Craig came by to visit. They didn't stay long; I was tired. I'd talk with them in the morning when they'd be back to visit (and with my Starbucks grande, sugar-free vanilla, soy, skinny mocha in hand).
I fell asleep ... cancer free at last.
 |
| Peaceful, pain-free recovery from double mastectomy ... |
Thursday, April 25, 2013
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 ...
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 ...
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!
Subscribe to:
Posts (Atom)