Hooter Hotline #4 The Tenth Cirle of Hell
December 15, 2009
Dear Hooter Hotline friends,
If Dante was correct about his Inferno, I would have reason to be very afraid. According to his order of the circles of hell, I would still have eight circles left as I prepare to leave "surgical decision-making-Limbo." Reviewing his list below, it occurs to me that in my 49 years of life, I have already slogged through, in no specific order, at least six levels. With the exception of Treason and Fraud, I freely admit to dabbling in circles 2-8, with an emphasis on wrath, sloth and gluttony. I seem to be working through the list from the bottom up with "Limbo" being my most recent stop.
First Circle (Limbo)
Second Circle (Lust)
Third Circle (Gluttony)
Fourth Circle (Avarice or Greed)
Fifth Circle (Wrath and Sloth)
Sixth Circle (Heresy)
Seventh Circle (Violence)
Eighth Circle (Fraud)
Ninth Circle (Treason)
Don't rat me out to Dante, but the last ten days of "surgical decision-making-Limbo" actually haven't been that bad. I credit your kindness and prayers for helping me pass the days with uncharacteristic patience and calm. Make no mistake though; ten days on the 50/50 fence (Lumpectomy/Bilateral Mastectomy) have not been fun. In fact, it's left deep chain-link impressions all over my ass. "It's a personal choice. It is an emotional choice. It's a lifestyle choice. You need to consider what baggage you bring with you. If you are a worrier, you might be happier with mastectomies. I would recommend bilateral mastectomies. I think you will be just fine with a revised lumpectomy. Whatever you choose, life expectancy is the same, but recurrence is higher with lumpectomy and we should be able to detect it on yearly mammograms. Radiation after lumpectomy mops up stray cells that may be left and taking Tamoxifen for five years will decrease recurrence by 50%. It's rare for a cancer to develop to a point of metastasis within the year between mammograms. It's really your choice. It's what you think you can live with. You have to think about whether you would have regrets down the road. You should listen to that little voice inside you." After listening to the doctors, that little voice inside me was screaming and I couldn't make out what it was saying except for a very shrill, “You guys are no help!” Between surgeon and oncologist, the message was clear...my choice was UNCLEAR! I felt like my head might explode. When they talked to me about my options, they seemed to speak as if they are comparing apples to apples. News flash: This choice goes beyond comparing even red apples to green apples. We're really talking about comparing a grape to a pineapple. It surprised me that my doctors seemed surprised that I was waffling about what to do. “When I first met you, you talked about just taking them off,” my surgeon reminded me as I leaned towards a revised lumpectomy for surgery #2 during a phone conversation. Stanford and Harvard teach Breast Surgeons excellent techniques, but may be a little deficient in teaching about the rapid evolution of a newly diagnosed cancer patient's reasoning process. It's true, I had the standard knee-jerk reaction when I first heard the news, "Take 'em off! Take 'em all off! Give me a Leatherman tool (or give me death) and I'll hack 'em off right now!" Initially I thought that, said that and believed that. If I had gone to surgery within 72 hours of getting the first pathology report, I'd be flat as a pancake now, wearing button-down shirts that have been languishing in the back of my closet ever since my bra size cruised by the first three letters of the alphabet. But my pseudo-decisive bliss would not last for long. A steady stream of doctor appointments, statistics, information, educated opinions of respected physicians, nurse navigators, scary stories from friends, friends of friends, coworkers, family, neighbors, and acquaintances followed, flooding most of my waking moments. Now the crystal clear reactionary picture became shrouded in the dense fog of my new reality. It is one thing to talk about having a mastectomy, but it is an entirely different thing to write one’s name on the surgery schedule for bilateral mastectomies.
“Gayle, I need to see you. I need to talk to you,” I said in a quaking voice on the phone. “Sure Jenny,” my little sister said, “I'll be home in a minute. We'll go some where and we can talk.” When we arrived at the Chinese Restaurant, I vomited the previous paragraph on her in a way that made my dilemma surpass the need for peace in the Middle East. “Have you made a pro and con list for each option?” she asked sensibly. “No,” I said sheepishly, silently chastising myself for being emotional and not having used the most basic tool from Decision-Making 101. Just as the crab puffs were brought to the table, she made me start writing the pros and cons. For a moment, my only dilemma was whether to eat a crab puff or start working on my assignment. I made the right choice of course. As I was chewing that savory bundle of cream cheese and crab with a “K” in its crunchy little pouch, I scratched out this table:
Dear Hooter Hotline friends,
If Dante was correct about his Inferno, I would have reason to be very afraid. According to his order of the circles of hell, I would still have eight circles left as I prepare to leave "surgical decision-making-Limbo." Reviewing his list below, it occurs to me that in my 49 years of life, I have already slogged through, in no specific order, at least six levels. With the exception of Treason and Fraud, I freely admit to dabbling in circles 2-8, with an emphasis on wrath, sloth and gluttony. I seem to be working through the list from the bottom up with "Limbo" being my most recent stop.
First Circle (Limbo)
Second Circle (Lust)
Third Circle (Gluttony)
Fourth Circle (Avarice or Greed)
Fifth Circle (Wrath and Sloth)
Sixth Circle (Heresy)
Seventh Circle (Violence)
Eighth Circle (Fraud)
Ninth Circle (Treason)
Don't rat me out to Dante, but the last ten days of "surgical decision-making-Limbo" actually haven't been that bad. I credit your kindness and prayers for helping me pass the days with uncharacteristic patience and calm. Make no mistake though; ten days on the 50/50 fence (Lumpectomy/Bilateral Mastectomy) have not been fun. In fact, it's left deep chain-link impressions all over my ass. "It's a personal choice. It is an emotional choice. It's a lifestyle choice. You need to consider what baggage you bring with you. If you are a worrier, you might be happier with mastectomies. I would recommend bilateral mastectomies. I think you will be just fine with a revised lumpectomy. Whatever you choose, life expectancy is the same, but recurrence is higher with lumpectomy and we should be able to detect it on yearly mammograms. Radiation after lumpectomy mops up stray cells that may be left and taking Tamoxifen for five years will decrease recurrence by 50%. It's rare for a cancer to develop to a point of metastasis within the year between mammograms. It's really your choice. It's what you think you can live with. You have to think about whether you would have regrets down the road. You should listen to that little voice inside you." After listening to the doctors, that little voice inside me was screaming and I couldn't make out what it was saying except for a very shrill, “You guys are no help!” Between surgeon and oncologist, the message was clear...my choice was UNCLEAR! I felt like my head might explode. When they talked to me about my options, they seemed to speak as if they are comparing apples to apples. News flash: This choice goes beyond comparing even red apples to green apples. We're really talking about comparing a grape to a pineapple. It surprised me that my doctors seemed surprised that I was waffling about what to do. “When I first met you, you talked about just taking them off,” my surgeon reminded me as I leaned towards a revised lumpectomy for surgery #2 during a phone conversation. Stanford and Harvard teach Breast Surgeons excellent techniques, but may be a little deficient in teaching about the rapid evolution of a newly diagnosed cancer patient's reasoning process. It's true, I had the standard knee-jerk reaction when I first heard the news, "Take 'em off! Take 'em all off! Give me a Leatherman tool (or give me death) and I'll hack 'em off right now!" Initially I thought that, said that and believed that. If I had gone to surgery within 72 hours of getting the first pathology report, I'd be flat as a pancake now, wearing button-down shirts that have been languishing in the back of my closet ever since my bra size cruised by the first three letters of the alphabet. But my pseudo-decisive bliss would not last for long. A steady stream of doctor appointments, statistics, information, educated opinions of respected physicians, nurse navigators, scary stories from friends, friends of friends, coworkers, family, neighbors, and acquaintances followed, flooding most of my waking moments. Now the crystal clear reactionary picture became shrouded in the dense fog of my new reality. It is one thing to talk about having a mastectomy, but it is an entirely different thing to write one’s name on the surgery schedule for bilateral mastectomies.
“Gayle, I need to see you. I need to talk to you,” I said in a quaking voice on the phone. “Sure Jenny,” my little sister said, “I'll be home in a minute. We'll go some where and we can talk.” When we arrived at the Chinese Restaurant, I vomited the previous paragraph on her in a way that made my dilemma surpass the need for peace in the Middle East. “Have you made a pro and con list for each option?” she asked sensibly. “No,” I said sheepishly, silently chastising myself for being emotional and not having used the most basic tool from Decision-Making 101. Just as the crab puffs were brought to the table, she made me start writing the pros and cons. For a moment, my only dilemma was whether to eat a crab puff or start working on my assignment. I made the right choice of course. As I was chewing that savory bundle of cream cheese and crab with a “K” in its crunchy little pouch, I scratched out this table:
I have to admit that as I put pen to paper, the reality of each option was freshly impressed upon my mind and I found myself welling up with tears. My sister rightly had no mercy and just sat there until I had finished. “Oh, Jenny,” she said, “I’m so proud of you! Look at how you were able to pour that out so quickly.” Yes, it did feel good to get all that mental debris organized. It had been dominating the landscape like a Kansas tornado, but now it had quelled to 40 mile per hour winds. Phew! We began to talk about the pro and con list. For me, the cons of having mastectomies without a definitive reason were too expensive. It seemed a high price to pay for something I couldn’t justify statistically. To be honest, there is a portion of me that would be happy to remove all potential breast cancer tissue, but my decision also effects my husband and how I experience the remainder of my life. I really don’t want to miss my breasts, have a numb chest or go through reconstruction.
I was tired of talking to the surgeon and the oncologist. I was getting no where. It was time to call my PCP, Dr. P. Pena. He was supposed to be in charge of me, right? He will consider all of my health concerns and not just my boobs. I went to my appointment and he listened well. He never spewed statistics. He told me that whatever decision I made would be "the right" decision. Taken aback, I remarked, “Well, that's a new one! No one has ever said that yet.” “Whatever you decide, it will be the best decision you can make at the time with the information you have,” he said. He finished with a big hug. It was refreshing to talk to him. I felt lighter than when I had come in, but did not volunteer to get on the scale as I was leaving to verify it.
So, what do I do? Well, it might be the nurse in me who loves science, but I rebel against the concept of making such a Double-D size decision based on emotions or on a projection of “what I can live with in the future.” Geeze, I pretend to be more evolved than that on a daily basis despite ample evidence demonstrating that I have made MANY emotional decisions in my life (Thank God for selective memory). I wanted to make my decision based on data. I plan to consider the psychological and social stuff too, but not exclusive of science. I figure I can train my heart and head to live any way I need too. I've done it before out of necessity and this is just a new necessity.
Breast MRI had been explained to me as an option regarding mastectomy decisions before my first surgery. It had not encouraged because of the many false positives it can register due to its sensitivity and furthermore, the MRI biopsy process may take several uncomfortable hours on the table and is difficult for the radiologist to accomplish. I didn't see any of those issues as true obstacles and I called the surgeon to ask for a MRI order. Again, I was cautioned about receiving false positives. I was also told that many women who had MRI's with suspicious findings, made decisions to have mastectomies which they later regretted when post-op pathology showed no cancer. “But I don't plan to make any decisions unless I have biopsies if something suspicious is found,” I reassured the surgeon. I had to go through another cautionary round of conversation before I was able to convince the doctor that I would go into the MRI EXPECTING positive results and COMMITTING to biopsy if needed. I had the MRI on Friday. Monday morning Dr. Wheeler called and said it was clean. Nothing suspicious was found, not even a spot that could be a false positive. I was very neutral about the results. I think she might have been disappointed that I didn't squeal for joy or sound relieved. "So, what are you thinking about doing?” she asked. I guess other patients are capable of entering a new piece of data into the blank, pressing some kind of “enter button” and computing a decision instantly, but I have old fashioned cogs and I need to get the WD 40, squirt a little here, a little there, let them grind for a while and in a bit, I'll have an answer. “I haven't decided yet. I was waiting for these results. I will take them into consideration and let you know in a couple days what I decide,” I said. “Oh, that's fine. You can take your time. We got the cancer out. We just need to go back in and get clean margins around the new area,” she replied.
Now this is where you come in. That's right; you Hooter Hotline friends have a hand in this. Don't worry; you get all the glory and none of the responsibility! I really did not know what surgical option to choose. For an extremely decisive person, wallowing around in indecision is as stressful as having to take showers after gym in Junior High School. If only I had the body now that I had in Junior High, I'd be taking showers in public and not even charging! But alas, here I am, fat, nearly fifty and about to make a decision that will impact:
• how long I live
• my chance of breast cancer recurrence
• the amount of surgical disfigurement
• degree of remaining chest sensation, mastectomy creates a wide band of permanent numbness across the chest
• potential impairment of sensuality/sexuality/body image: “The girls” have been my heavy hitters in the seduction department...Come on, you and I both know that even if we have a little wine-belly, a couple saddlebags, a few chin hairs, smile lines and stray grays, we relish the fact that “the girls" still work for our men and have a supporting role in making sure “it was good for me too!”
• whether I need radiation treatment
• whether or not to have reconstruction if mastectomy is chosen
With just a few things on my plate to think about, I’ve found it strangely difficult to pray. And when I do close my eyes at night and earnestly give it a try, it is like I have ADD/HD of my thoughts. I can’t seem to pray one complete sentence. The thoughts bounce in and out like a box of Ping-Pong balls dropped on a hardwood floor. This makes me extra grateful that others are praying for me. I literally feel “carried” by your prayers. Never underestimate what your prayers are accomplishing. You have gifted me God’s peace and I am sleeping well at night and being productive at work. I threw a big birthday party for John, decorated for Christmas, mailed the Christmas cards and had a wonderful, non-breast cancer discussion get-a-way weekend with Rog, all with your help. Your prayers have sustained me in this muddled, fuddled, noodle eating poodle beetle battle in a bottle fox in sox Sir. Thank you and let me know if I can return the favor.
I am absolutely certain that if Dante had been a breast cancer patient with all the options medical technology offers, he would have written about a tenth circle in hell…indecision.
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