“Your test results were negative.”
This call was welcome news from my doctor, but also surprising. I had seen Dr. Jones (not his real name) for countless years, and he had never telephoned to announce a negative result. I did not yet realize these words would be the only good part of the call.
“I talked with the radiologist about your implants.” (Sorry about the T.M.I. but yes, I have implants. As a childhood burn survivor, implants were necessary.) “The radiologist says you have an intracapsular leak. That means they could leak inside your body, which isn’t good. They should be removed.”
Dr. Jones hesitated. “We will need a special surgeon, because of your torso.”
Yeah, no kidding.
My torso remains the same size as it was when I was four and burned in a horrific fire on two-thirds of my body. I am burned almost everywhere, but my torso is the worst. I am deeply scarred around my waist, my middle, and my chest. The underlying fat and musculature were also partly eviscerated. The skin there is as tight as a drum. My skin has not expanded for the past five decades. If you pushed your finger against my chest, the tight skin would not budge an inch in any direction.
I suddenly envisioned being cut open during surgery to remove the implants. I saw my innards springing out from my body, like confetti, joyful to be released from 54 years of bondage inside the tight torso.
“I do have a burn surgeon. She can do the procedure.”
“Oh great.” I could hear the relief in Dr. Jones’s voice. “I will talk to her, and we will get this going.”
“Thank you. Thank you for taking good care of me, even though I’m so complicated.”
“Of course, Lise. Of course.”
Lucky for me, I guess, I was already scheduled to see my burn plastic surgeon for a laser procedure in a few days. Lucky in that I have an extraordinary plastic surgeon who provides me with world class burn care.
Unlucky, in that I have to do any burn care at all.
This tight torso is not a new problem. In fact, the constriction has plagued me for over 30 years. Two surgeons have explained that I could feel more comfortable. Possibly my skin could feel less banded, clutching me like a permanent girdle. Possibly my four-year-old torso could be brought into better balance with my middle-aged hips. What I need is massive skin grafting. (For a longer explanation on skin grafting, burn care and my story, I cheerfully refer you to my book, Flashback Girl).
A surgeon once told me that he could use the extra stomach skin that arrived unordered when I birthed two perfect babies and flap up that unwanted skin where I need it most. Now doesn’t that sound perfect? What woman would put that surgery off for 30 years?
A traumatized woman.
Also, a self-employed psychologist with a full private practice and no paid sick time.
A week later, I sat in the burn center, Michelle, the whole-hearted burn nurse nearby. Arms outstretched, I held my blue hospital gown wide open, feeling like a flasher. My esteemed surgeon, Dr. Eberwein, assessed me keenly, eying my waist and middle. I watched her and waited while she looked at my scars. Dr. Eberwein explained that there were three possible options.
1) Option 1: remove and replace the implants. This would solve the leakage issue, but not the tight torso issue. One surgery.
2) Option 2: Remove and replace the implants and do the dreaded skin grafting. This would bring me the relief for my tight skin. Two or three operations, each requiring a 3–5 day hospitalization.
3) Option 3: Option 2, plus have a number of other surgeries to reconstruct more normal skin over the whole area (“the DIEP”). Dr. E seemed most intrigued with this option.
“You would have to have it with another surgeon; I don’t do the DIEP procedure. But then I would do the grafting afterwards. The results could be very good.”
“I would have to be in another hospital?”
“Yes, and there would be multiple major surgeries, plus what we would do here afterwards.”
“I don’t think I want that.”
“Yes, but look it up before you decide. It is cutting edge and they are getting great results.”
“I will. But if I just do the grafting, I will be here with you. On the burn unit. Right? I will be with the burn team here?” My vocal tone rose, and I sounded increasingly like the child I felt inside, the four-year-old inner me that perfectly matched my four-year-old torso.
“Yes.” Dr Eberwein and Nurse Michelle looked at me kindly. Their eyes shone with care. They knew why I asked.
No one understands being burned unless you have been burned or lived in the hospital trenches with someone who has. The pain, the vulnerability. Being skinless. Depending on strangers to help you. The fear. The sadness. All of this reverberates inside me still. Medical procedures are triggering so I have no interest in being at a hospital with a surgical team who doesn’t understand. But at Lehigh Valley Burn Center, I don’t have to explain a thing. They know. I can relax there, safe with a staff that truly cares about trauma.
After my consultation with Dr. Eberwein, I had my 16th (??) laser. Those aren’t a walk in the park either, let me tell you. They did give me a little down time though. So, during my days of recovery, I had time to contemplate my decision.
I talked to my husband. I talked to my daughters. I talked to friends. There was no one, I repeat no one, who thought it was a good idea for me to do Option 3. I am a married woman in my late 50s. If I were 18, I would have made a different choice. If I were 18, I would be desperate for The DIEP. But I am not 18, and every surgery rocks me to my core.
Plus, I have clients and a practice, and people who depend on me. It is one thing to have 2-3 surgeries and quite another to have 5-6.
Option 2 it is. I realize too that there is no time like the present. Here is a grateful list of what I have going for me, right now, which may not always be the case.
1) Dr. Eberwein, whom I trust 100%.
2) The burn team at Lehigh Valley, whom I also trust 100%.
3) Good health insurance.
4) Good health.
5) I’m not getting any younger.
6) The ability to see my clients via teletherapy. I always thought I couldn’t take off much time from work for surgery, because of my caseload. People depend on me and I am devoted to them. Now, even if I am stuck at home and unable to do much, I can still see my clients, just like I did all through the pandemic. Teletherapy will make these surgeries possible.
So, Option 2 will happen in September, continuing for 8 weeks. I will be in and out of the hospital or recovering at home. I have been in the hospital countless times. That part won’t be new. This time, however, I will go to surgery as a writer, and report back to you from the hidden world of burn care. I hope that my journey can help inform other burned folks and the people who love them. I hope that my writing will capture this strange world of scars and skin, grafting and donor sites, pain and recovery.
I also hope to have softer, plentiful skin around my middle. At long last, I hope to be comfortable.
Lise Deguire's gold award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader.