7/1/2010
Mr. Weihenmayer,
Hello there. My name is Jackie Ledbetter and I finished reading Touch the Top of the World early this afternoon. I've been thinking about your story somewhat frequently over the week I've been reading it, and it has come to mean something special to me-- it's helping me to put my own life into perspective, in a way. I wanted to write you about my thoughts so I looked your address up on the internet. Hopefully that's neither strangely stalkerish or an invasion of privacy-- I would hope you're accustomed to fan mail.
I'm 24 and fit the typical outdoor junkie profile: I live in SLC to be near the skiing, hiking, canyons, biking and caves; I have guided whitewater rafting trips in UT, ID, AK and AZ; I love to climb ice and rock but at a much more casual level of tenacity than my 5.12-hungry partners; and the past couple years I've worked as a Wilderness Therapy Instructor for teens.
I live for travel, family and friends, I love to cook, I have an avid affinity for reading, tattoos fascinate me, dancing to indie rock or bluegrass lifts my spirits, I'm relentlessly positive and easily intrigued, I'm always up for an environmental debate, I don't care for chocolate and I think astrology is total crap. quite average and content.
Last month, out of the blue, I was diagnosed with breast cancer. It doesn't run in the family, I've had no bizarre exposure, I eat organic and raw foods-- it was quite unexpected. I'm handling it very well because I'm an outstandingly lucky person. I have top-notch surgeons, a banner support system, and youth and vitality on my side, hopefully making chemo a walk in the park. I have yet to start chemo, it keeps getting postponed due to an infection I developed after surgery, which is what I've been mulling over as I read your book.
I had a left mastectomy 9 days after diagnosis. My surgeon put a tissue expander in place of the breast, a device that would help insure I have enough skin for my reconstructive surgery following chemotherapy. Unfortunately, a staph infection formed; I had another surgery to clean things out and switch out my old, gnarly expander for a new one. I just stopped antibiotics and the infection does not seem to have cleared. If it does not in the next few days, I will go in for my 4th surgery in two months, and will proceed into treatment with half a flat-chest.
The idea of that possibility had me nauseous with anxiety and fear. My boyfriend summers in Alaska and left the morning of my mastectomy, so he hasn't seen me. I was flooded with heartbreaking thoughts of his facial expression the first time he saw my new, freakish torso, trying to smile whole-heartedly but falling short. I imagined the 5 months of treatment I would undergo with my clothes not fitting unless I purchased an expensive prosthesis. I got really down thinking about reconstruction. If I lose my expander, I will have to have a gel implant rather than make a breast from my own fat, which creeps me right out. I couldn't keep out pictures of my body as decades passed, one breast staying eternally perky, one acting its age. or potentially awkward conversations with future lovers about texture, or what swimsuit shopping would be like, or any number of other festering insecurities that were cropping up out of nowhere as I stewed and stewed.
Then, I read the part in your book where you took your eye out in front of Ellie for the first time. To be honest, I was surprised that this was an insecurity for you because, to me, seeing a loved one I knew to be missing an eye, take out a false one would not be a big deal. It was at that moment that I realized the same applied to me missing a breast. I remembered my own resolve and sense of self-love that I had forgotten as I worried about surgery. I remembered that a loved one would continue to love me regardless of whether or not I'm missing a breast (or an eye), and if not, well, then that would be a welcome indicator of the quality of love we share.
I looked at all you have been able to achieve in life and began to see my situation for what it really is: an opportunity to take something that makes me different from others and use it to lead a rich and fulfilling life.
Your ability and ambition to pursue your dreams despite preconceived notions and the lack of predecessors to teach you how to achieve all of your accomplishments as a blind man,; is truly endearing and remarkable. Your book helped me to move past the immediate preoccupation of cancer by reminding me of my dreams. I have a gifted scientific mind and can't wait for the day I make a groundbreaking discovery in the field of island biogeography, or the effects of genetically modified foods on humans. I will someday smell the air of Peru, Bolivia, Cambodia and India, I will taste durian fresh off the tree in Indonesia and I will witness the gradual restoration of New Zealand's great coral reefs first hand.
Thank you so very much for unintentionally helping me rise above my self-imposed funk and reminding me of my potential and inherent passion for life. Your book will always be close to my heart and a go-to suggestion for friends in need of distraction from personal gloom or inspiration to make the best of any given situation.
With utmost respect and sincerity,
Jackie Ledbetter
Wednesday, July 7, 2010
Sunday, July 4, 2010
Plastic does not always prevail
Guess what? I had to have another surgery. This is becoming old hat, but still holds some of the same intrigue and amusement it always has.
My "last" drain taken out on 6/29 and I was ecstatic! For the first time in six weeks I was able to toss and turn when I slept, or wear a dress, or extend my left arm to reach something without feeling the tubes that ran into my body shift under my clothing. Such a simple thing-- she cut some stitches, yanked five inches of plastic tubes out of tissue I no longer have feeling in, and covered the newly made hole in my side with a wad of gauze and tape-- but it brought me into a whole new, slightly forgotten world of comfort.
Dr. Chen cultured the fluid from my drain to see if I still had any traces of the staph infection that had warranted my third surgery. I got news of the results two days later and turns out everything had cleared up! All gone, nothing wrong with the new surgery. Things were looking great, there was no redness, pain, fever or anything unpleasant. I was finally feeling like "Yes, this is how this is supposed to feel and look!"
Then I went out to Ah Sushi/Oh Shucks the following evening to see Scott, a dear friend come visiting, and to have a few goblets of celebratory microbrew. All was laughs and good times, even ran into some beautiful folks I hadn't expected to see-- life as it used to be.
Until I noticed a stain on my shirt when I was looking in the mirror in the bathroom. It was circular and directly where my nipple would have been on my left breast. I was wearing a green and black striped dress so it wasn't the most noticeable, but it was a mildly puzzling stain. I didn't think anyone had spilled anything on me, including myself, it didn't smell like beer and even if it was, how in the hell would I get a circular spill? I was somewhat intoxicated at this point so I chose to shrug off this minor mystery, clean up my dress a tad and go back to the enticing laughter and bustle of the bar.
Upon further inspection the following morning, it was quite obvious that my skin had broken and my breast had been leaking the following evening. My first gut response was revulsion-- I had thought that was an experience I wouldn't have to endure unless I chose motherhood. I mean, yeck! My second thought was that this couldn't possibly be good. The fluid coming out was yellow and looked healthy, it just shouldn't have been coming out of my incision. My skin had broken along the incision where my expander had been rubbing most, making my skin thin and vulnerable. It had only broken a tiny, itsy bit, about the size of a pinprick, but yellow oozed out steadily if left unimpeded, so I knew I'd be seeing a doctor soon.
I went to my plastic surgeon first thing the next day. She pulled away the stacked, soiled gauze, studied the flow of fluid seeping out of my skin for a moment and said "I'm sorry Jackie, but I'm going to have to remove the expander."
I balked. That was so fast and blunt. Why is that the only way? She explained that now that the skin had broken, she guaranteed 100% that I would become infected again-- there was now an open conduit to the outside, bacteria-ridden world and they would inevitably find their way into my body. I was very disappointed. Everything seemed to have been going exactly as it should have been, it was just a minuscule break in the skin! but it was finished and now I was going to be flat-chested on one the left side.
She said she wanted to do the surgery that same day, perhaps after five when she would be done with all her patients. She mentioned the option of having another expander swap like my third surgery, but that would delay chemo an additional month and she felt I would be risking my survival if I opted to do that. I am already behind over a month from when I was originally scheduled to start treatment and she's adamantly suggested I do all I can to move on to the next step.
I sniffled into tissues and nodded in agreement. She was quite obviously right and I was eager to start chemo too, I was just momentarily stuck on petty worries. I sat in a chair staring at the floor for a couple minutes, my mind heavy with a flood of small things that don't matter but were overwhelming me as they all cropped up at once.
Ican'twearsundressesthisyearIdon'tcarewhatIlooklikeinaswimsuitbutitmightmakeothers
uncomfortableohmanthehotspringsaregoingtobeawkwardforonlookersiwonderifthatcorsetwillever
fitthesameagainwonderifiwillfeeljustasfeminineatleastiwillbeabletorunnowhopeseandoesn'tthink
it'stoofreakylookingmaybeiwillloseapoundortwobecauseofthis
And so on. Not thoughts that I would give the time of day usually, but when I'm surprised with big news out of the blue, it takes a second for me to sort out the big picture.
I called my family to inform them of the impromptu procedure as I was driving back to my grandparents' house. As soon as I got home, Intermountain Medical Center called to inform me that I needed to be at the hospital at 3:30, which meant that even though I hadn't eaten or drank anything yet today, too bad, can't til after surgery.
I spent my early afternoon taking pictures of my drippy breast, poking, prodding and sighi
ng. I was feeling better and better as time went on and I steadily reminded myself that I didn't care if I lost a breast completely or not. I truly don't. I would care a whole lot more if it was going to be a permanent condition, but it's not-- it's 4-8 months and then I get a new one. All of my usual self-talk came back strong as ever and I was comforted by my soothing inner dialogue kicking back in to its regular gear; my rational self telling the strung out bit to calm the hell down because who I am is entirely separate fr
om what I look like.
When it came time to go to the hospital, I was back to peaceful, albeit resigned, optimism. So I wasn't going to have a breast. Ah well.
My grandparents sat with me for an hour and a half while we waited for an anesthesiologist to free up. Since it was after hours, they only have two available and both were already in other surgeries. I remembered after a while that I had a friend, Sarah Child, who was staying in the same hospital I was sitting in, so I texted her to see if she was up and about. Turns out she wanted to come down to say hello before I went under.
My grands waited for her to show before leaving for dinner (they don't like to leave me alone before surgeries, understandably) and then went off to Mimi's since the nurse said I had an additional hour to wait. I caught up with Sarah for 15 minutes or so and enjoyed it so, so much.
Sarah is right around my age and even more active than myself, making a point to rock climb, hike, paraglide, sky dive, base jump, speed fly-- what have you-- as often as she can because it's what she loves. She got in a rather nasty speed flying accident a month ago and crushed her L3 (I think). She said her legs instantly went numb when she hit and she remembers the "oh shit" moment clearly. I was dumbfounded trying to imagine what that must have been like; pretty sure I would have lost all composure when presented with the possibility of being paralyzed below the waist.
Luckily, the spinal cord is all said and done above her injury, so that was relatively unaffected. They told her she wouldn't walk for several months, and despite that prognosis, already a month into recovery/rehab and she can stand on her own and walk several steps as long as she has something to lean on or someone helping her. She wears a sleek, white back-brace named Xena Trooper everyday and gets around in a wheelchair. She is scheduled for release on July 8th and doesn't yet know how living at home is going to work, there's still a lot she's limited to.
I suppose you could look at her situation as a tragedy, but being around her was remarkably inspirational, interesting and happy, not tragic in the least. She exuded so much positive energy and hope-- it was astonishingly beautiful to be around. She believes her attitude has greatly contributed to her hasty recovery and I couldn't agree more. I strongly believe that your situation is what you make of it. True, focusing all her mental energy on standing and walking around as per usual by tomorrow probably won't yield immediate results, but continually working hard toward strengthening her body, surrounding herself with loving friends, making jokes and laughing hard, and recognizing the ways in which she is still so lucky, is keeping her strong and motivated.
Sarah, if you read this, you helped me gain a lot of perspective. So I can't sit out in the sunshine for more than 10 minutes, I'm going to be poisoned repeatedly, all my hair will fall out and I've had a boob cut off: you're relearning how to walk. A year from now we'll both be back to what we love and be better off for all of this. Just you wait and see. ;)
I went into surgery much happier than last. Turns out that since this surgery would only be an hour or so, I wouldn't have to have a tracheal tube, otherwise known as the bane of my existence. After I found that out, I knew this would be a cake walk.
I woke up hazy as usual, stayed in recovery for a little over an hour, then was released home. It was already 10:30, so I ate a salad and went to bed, pain and worry free.
The next day, I was standing in my bathroom, looking at my reflection quizzically. I was about to take a shower and hadn't yet seen what my chest looked like. I kinda didn't want to yet but figured I might as well get it over with. I removed my compression vest and the big ball of gauze over my incision and gaped at what I had going on. It looked nothing like the pictures she had shown me to prepare me for what it would look like-- it wasn't flat like a boy as she had suggested, but concave, indented like a mini crater. I called my grandma into the bathroom to look at it and her adorable, proper British self said "Ah well...yes that is strange...it looks a little mutilated now, doesn't it?" We both had a good laugh over how ridiculous and unexpected it was for a bit, then I jumped in the shower and moved on with my day.
I went to a barbecue at Brian Bernard's parents house on the 3rd, which was oh so lovely. I get a lot of amusement out of people's expressions when I say casually "yeah, that's a drain, I just had surgery yesterday." I think most people think of surgery and imagine someone laid up in a bed in pain, having their meals brought to them and such. That's still true for a lot of surgeries, but apparently getting boobs removed has come a long way, hurts less than getting a cavity filled.
I'm happy with how I look and becoming more comfortable with each passing day. I feel more comical than sexy, which is quite a change, but not necessarily a bad one. I've been having fun playing around with clothing. I don't care about what people would think if I walked around with one side obviously flat and different, but I think I'll try to make it look relatively symmetrical just to avoid being stared at. My grandma and I had some good laughs trying to see what we could do with gauze and old shoulder pads underneath a tank top. It's strange stuffing my bra, I haven't done that since I was 12. I still might purchase a prosthesis, but they're kinda pricey so I might just make due with gauze or nothing at all. It's all the same to me.
This is a picture of the lovel
y freckles I have continually pushed to preserve. It's strange to me that most people hear I'm going to lose stretch marks, get a tummy tuck and new boobs, then assume that I must be so happy, like I'm receiving some sort of gift or something. My imperfections are a point of pride-- I love my freckles and stretch marks, I think they're sexy. Why would I want to lose something like that?
This is also how I look without trying to hide anything. Dr. Chen did something to my muscle to make my left ribs protrude more than the right, but it's hopefully just swelling and will go away eventually. Or I'll just have extra padding on my lower left ribs for no real reason. *shrug*
Ta-da!
My grandma says it looks like an old lady without her teeth in. I agree.
Hopefully my next update will be about starting chemo, which will start in a week and a half if I have no further complications. Keep your fingers crossed...
Loves!
My "last" drain taken out on 6/29 and I was ecstatic! For the first time in six weeks I was able to toss and turn when I slept, or wear a dress, or extend my left arm to reach something without feeling the tubes that ran into my body shift under my clothing. Such a simple thing-- she cut some stitches, yanked five inches of plastic tubes out of tissue I no longer have feeling in, and covered the newly made hole in my side with a wad of gauze and tape-- but it brought me into a whole new, slightly forgotten world of comfort.
Dr. Chen cultured the fluid from my drain to see if I still had any traces of the staph infection that had warranted my third surgery. I got news of the results two days later and turns out everything had cleared up! All gone, nothing wrong with the new surgery. Things were looking great, there was no redness, pain, fever or anything unpleasant. I was finally feeling like "Yes, this is how this is supposed to feel and look!"
Then I went out to Ah Sushi/Oh Shucks the following evening to see Scott, a dear friend come visiting, and to have a few goblets of celebratory microbrew. All was laughs and good times, even ran into some beautiful folks I hadn't expected to see-- life as it used to be.
Until I noticed a stain on my shirt when I was looking in the mirror in the bathroom. It was circular and directly where my nipple would have been on my left breast. I was wearing a green and black striped dress so it wasn't the most noticeable, but it was a mildly puzzling stain. I didn't think anyone had spilled anything on me, including myself, it didn't smell like beer and even if it was, how in the hell would I get a circular spill? I was somewhat intoxicated at this point so I chose to shrug off this minor mystery, clean up my dress a tad and go back to the enticing laughter and bustle of the bar.
Upon further inspection the following morning, it was quite obvious that my skin had broken and my breast had been leaking the following evening. My first gut response was revulsion-- I had thought that was an experience I wouldn't have to endure unless I chose motherhood. I mean, yeck! My second thought was that this couldn't possibly be good. The fluid coming out was yellow and looked healthy, it just shouldn't have been coming out of my incision. My skin had broken along the incision where my expander had been rubbing most, making my skin thin and vulnerable. It had only broken a tiny, itsy bit, about the size of a pinprick, but yellow oozed out steadily if left unimpeded, so I knew I'd be seeing a doctor soon.
I went to my plastic surgeon first thing the next day. She pulled away the stacked, soiled gauze, studied the flow of fluid seeping out of my skin for a moment and said "I'm sorry Jackie, but I'm going to have to remove the expander."
I balked. That was so fast and blunt. Why is that the only way? She explained that now that the skin had broken, she guaranteed 100% that I would become infected again-- there was now an open conduit to the outside, bacteria-ridden world and they would inevitably find their way into my body. I was very disappointed. Everything seemed to have been going exactly as it should have been, it was just a minuscule break in the skin! but it was finished and now I was going to be flat-chested on one the left side.
She said she wanted to do the surgery that same day, perhaps after five when she would be done with all her patients. She mentioned the option of having another expander swap like my third surgery, but that would delay chemo an additional month and she felt I would be risking my survival if I opted to do that. I am already behind over a month from when I was originally scheduled to start treatment and she's adamantly suggested I do all I can to move on to the next step.
I sniffled into tissues and nodded in agreement. She was quite obviously right and I was eager to start chemo too, I was just momentarily stuck on petty worries. I sat in a chair staring at the floor for a couple minutes, my mind heavy with a flood of small things that don't matter but were overwhelming me as they all cropped up at once.
Ican'twearsundressesthisyearIdon'tcarewhatIlooklikeinaswimsuitbutitmightmakeothers
uncomfortableohmanthehotspringsaregoingtobeawkwardforonlookersiwonderifthatcorsetwillever
fitthesameagainwonderifiwillfeeljustasfeminineatleastiwillbeabletorunnowhopeseandoesn'tthink
it'stoofreakylookingmaybeiwillloseapoundortwobecauseofthis
And so on. Not thoughts that I would give the time of day usually, but when I'm surprised with big news out of the blue, it takes a second for me to sort out the big picture.
I called my family to inform them of the impromptu procedure as I was driving back to my grandparents' house. As soon as I got home, Intermountain Medical Center called to inform me that I needed to be at the hospital at 3:30, which meant that even though I hadn't eaten or drank anything yet today, too bad, can't til after surgery.
I spent my early afternoon taking pictures of my drippy breast, poking, prodding and sighi
ng. I was feeling better and better as time went on and I steadily reminded myself that I didn't care if I lost a breast completely or not. I truly don't. I would care a whole lot more if it was going to be a permanent condition, but it's not-- it's 4-8 months and then I get a new one. All of my usual self-talk came back strong as ever and I was comforted by my soothing inner dialogue kicking back in to its regular gear; my rational self telling the strung out bit to calm the hell down because who I am is entirely separate fr
om what I look like.When it came time to go to the hospital, I was back to peaceful, albeit resigned, optimism. So I wasn't going to have a breast. Ah well.
My grandparents sat with me for an hour and a half while we waited for an anesthesiologist to free up. Since it was after hours, they only have two available and both were already in other surgeries. I remembered after a while that I had a friend, Sarah Child, who was staying in the same hospital I was sitting in, so I texted her to see if she was up and about. Turns out she wanted to come down to say hello before I went under.
My grands waited for her to show before leaving for dinner (they don't like to leave me alone before surgeries, understandably) and then went off to Mimi's since the nurse said I had an additional hour to wait. I caught up with Sarah for 15 minutes or so and enjoyed it so, so much.
Sarah is right around my age and even more active than myself, making a point to rock climb, hike, paraglide, sky dive, base jump, speed fly-- what have you-- as often as she can because it's what she loves. She got in a rather nasty speed flying accident a month ago and crushed her L3 (I think). She said her legs instantly went numb when she hit and she remembers the "oh shit" moment clearly. I was dumbfounded trying to imagine what that must have been like; pretty sure I would have lost all composure when presented with the possibility of being paralyzed below the waist.
Luckily, the spinal cord is all said and done above her injury, so that was relatively unaffected. They told her she wouldn't walk for several months, and despite that prognosis, already a month into recovery/rehab and she can stand on her own and walk several steps as long as she has something to lean on or someone helping her. She wears a sleek, white back-brace named Xena Trooper everyday and gets around in a wheelchair. She is scheduled for release on July 8th and doesn't yet know how living at home is going to work, there's still a lot she's limited to.
I suppose you could look at her situation as a tragedy, but being around her was remarkably inspirational, interesting and happy, not tragic in the least. She exuded so much positive energy and hope-- it was astonishingly beautiful to be around. She believes her attitude has greatly contributed to her hasty recovery and I couldn't agree more. I strongly believe that your situation is what you make of it. True, focusing all her mental energy on standing and walking around as per usual by tomorrow probably won't yield immediate results, but continually working hard toward strengthening her body, surrounding herself with loving friends, making jokes and laughing hard, and recognizing the ways in which she is still so lucky, is keeping her strong and motivated.
Sarah, if you read this, you helped me gain a lot of perspective. So I can't sit out in the sunshine for more than 10 minutes, I'm going to be poisoned repeatedly, all my hair will fall out and I've had a boob cut off: you're relearning how to walk. A year from now we'll both be back to what we love and be better off for all of this. Just you wait and see. ;)
I went into surgery much happier than last. Turns out that since this surgery would only be an hour or so, I wouldn't have to have a tracheal tube, otherwise known as the bane of my existence. After I found that out, I knew this would be a cake walk.
I woke up hazy as usual, stayed in recovery for a little over an hour, then was released home. It was already 10:30, so I ate a salad and went to bed, pain and worry free.
The next day, I was standing in my bathroom, looking at my reflection quizzically. I was about to take a shower and hadn't yet seen what my chest looked like. I kinda didn't want to yet but figured I might as well get it over with. I removed my compression vest and the big ball of gauze over my incision and gaped at what I had going on. It looked nothing like the pictures she had shown me to prepare me for what it would look like-- it wasn't flat like a boy as she had suggested, but concave, indented like a mini crater. I called my grandma into the bathroom to look at it and her adorable, proper British self said "Ah well...yes that is strange...it looks a little mutilated now, doesn't it?" We both had a good laugh over how ridiculous and unexpected it was for a bit, then I jumped in the shower and moved on with my day.
I went to a barbecue at Brian Bernard's parents house on the 3rd, which was oh so lovely. I get a lot of amusement out of people's expressions when I say casually "yeah, that's a drain, I just had surgery yesterday." I think most people think of surgery and imagine someone laid up in a bed in pain, having their meals brought to them and such. That's still true for a lot of surgeries, but apparently getting boobs removed has come a long way, hurts less than getting a cavity filled.
I'm happy with how I look and becoming more comfortable with each passing day. I feel more comical than sexy, which is quite a change, but not necessarily a bad one. I've been having fun playing around with clothing. I don't care about what people would think if I walked around with one side obviously flat and different, but I think I'll try to make it look relatively symmetrical just to avoid being stared at. My grandma and I had some good laughs trying to see what we could do with gauze and old shoulder pads underneath a tank top. It's strange stuffing my bra, I haven't done that since I was 12. I still might purchase a prosthesis, but they're kinda pricey so I might just make due with gauze or nothing at all. It's all the same to me.
This is a picture of the lovel
y freckles I have continually pushed to preserve. It's strange to me that most people hear I'm going to lose stretch marks, get a tummy tuck and new boobs, then assume that I must be so happy, like I'm receiving some sort of gift or something. My imperfections are a point of pride-- I love my freckles and stretch marks, I think they're sexy. Why would I want to lose something like that?
This is also how I look without trying to hide anything. Dr. Chen did something to my muscle to make my left ribs protrude more than the right, but it's hopefully just swelling and will go away eventually. Or I'll just have extra padding on my lower left ribs for no real reason. *shrug*
Ta-da!
My grandma says it looks like an old lady without her teeth in. I agree.Hopefully my next update will be about starting chemo, which will start in a week and a half if I have no further complications. Keep your fingers crossed...
Loves!
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