February 15, 2011

Nearing the 18-Month Mark

Next month will be a year and a half since my graft surgery. It's beginning to feel like "history" now which is refreshing. Looking in the mirror is always a reminder but the healing continues. I've been touched by the comments from people who have shared similar experiences. I'm grateful to those who have shared their stories with me, along with their photos.

When I meet new people, I sense how they are looking at me; just trying to figure out what that might be on my cheek. But the stares aren't glares like they used to be--simply natural human curiosity. Most people have no idea what skin grafts look like, or why a person would have a circular scar like this. So I understand them wanting to look just a little bit longer than a person normally focuses on your face when you meet or shake hands etc. Nobody has ever actually asked me what the scar is from, but I can feel that I'm being looked at in a particular way. I have finally developed an ability to let them look...without wanting to turn away.

8 comments:

  1. I am so grateful that you continue to blog and to post pictures. I have posted before. The mapping biopsies, four of them, have finally defined the perimeter of the lesion, although I will need a biopsy of the conjunctive tissue under general anesthesia. The lesion is very large--about four or five times the size of yours--so the surgery will be more complicated. Right now it looks like I have a sort of interesting Maori tattoo about two inches square from the upper eyelid to the cheekbone. We will see what the skin grafts look like. And the conjunctive biopsy may change the picture. But to anyone reading this, and tormented about the right course to take, lentiga is an existentially mysterious cancer. You could have it for years or even decades and be fine, and die of something else--or not. My own feeling, having made the difficult decision to go ahead with the surgery (radiation and treatment with Alvara/Imiquimod were ruled out) is that intervention, however frightening and even disfiguring, is the sane recourse. And Quiet One, your enduring beauty is an inspiration.

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  2. Thank you for your kind words. You've eloquently stated the hellish reality of having to reluctantly move forward with the next step. Having your lesion's perimeter defined sounds like quite a process. Your comments here will be very helpful to others who are going through this. Please continue to keep us updated.

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  3. My surgery is March 8. I will keep the site posted. It has been such an important part of my education. The other part--and I urge readers to do the same--has been to seek multiple "second" opinions from experts. I am a journalist by profession, and I treated my cancer as I would a story: I consulted at least five oncologists/researchers/dermatologists, and when their advice conflicted, I kept going. (There were a bewildering variety of opinions, based on the dearth of statistics.) Yet only one august dermatologist suggested that I could "watch and wait," though not on the eye, and only if, as he put it, I had an unusual appetite for risk and acceptance of its consequences. "If you were a skydiver," he said, "I might tell you you could live with the cutaneous lentiga and see what happens. There are many people walking around with it undiagnosed, and some of them will be fine. And if you were in your eighties, I would say, leave it. But if you are the kind of person who would not forgive herself for betting the odds and losing, you have to have the surgery now." His authority, in other words, deferred to my free will, and philosophiocally, that was interesting. I am not, it turns out, someone who could forgive herself...
    DO NOT BE SHY, readers, especially, perhaps, female readers, about seeming "pushy" or "ungrateful" in going beyond the doctor or facility that first diagnosed you. You should feel complete trust in your team. It is your life. And the best doctors understand that. They will not object to forwarding your files (with written permission) to whomever you choose to consult. Good luck to everyone dealing with this disease--and stay tuned.

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  4. Very interesting how numerous medical opinions varied in your case. Good advice to "not be shy." Wishing you well March 8.

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  5. I had the resection of the cancer site and skin grafts last Tuesday, a three hour procedure under general anesthetic. Having done my homework, and feeling I was in the best hands, I surrendered my anxiety. The donor site was under my right upper arm. (I am left-handed.) The surgery went beautifully, and the doctor said that the donor site skin was as good a match as possible in color (I did not have enough loose skin behind the ears.) He also joked that I would have the underarm of a 16 year old!

    Anesthesia always makes me nauseous, and I did throw up in the recovery room, but without, luckily, hurting the wounds. They sent me home that night, where I threw up again. I really feel they should have kept me overnight, but insurance wouldn't pay for it! Welcome to American medicine in 2011.

    BUT: there was remarkably little pain afterwards--Tylenol with codeine, sparingly taken, did the trick. I religiously iced the wound for 48 hours as instructed, and my nurse had a brilliant system for icing facial wounds which I would like to share:
    Fill some surgical gloves with small or crushed pieces of ice, and store them in the freezer. Buy a supply of disposable shower caps--cloth if possible. Tuck an ice-pack (glove) into the hem of the cap and put it on, adjusting the ice over the eye/cheek/wound area. It makes icing much easier!
    Yesterday, the hideous pressure bandage/balloon, which was about the size of two golf balls, came off, and my eye, which had been sutured closed to help support the graft, and also so that it wouldn't droop, was partially re-opened. The bright light, even with my lid closed, was excruciating, but apparently because I had not done enough to moisturize the eye. I had used the drops/salve as directed for five days, but not for the full seven! (Be religious about moisturizing/cleaning if you are having this surgery.) It is still a little blurry, but I can see!

    On Thursday, more sutures will be removed.
    The graft is not as horrible-looking as I expected. At the moment, it is a dark, liverish-colored purple, about two inches wide and two deep, with a curlicue on the upper lid, but fairly flat. There is a darker line of tiny couture stitching that outlines it. It sort of looks like a really bad birthmark. I am told that it will fade to almost normal in time. (A lot of time.) A really big pair of dark glasses hides most of it.

    I am in relatively chipper spirits, all considered, partly because of wonderful support from friends and family, and knowing that there are readers like you out there going through similar experiences. The prognosis for survival is excellent.

    I am, however, waiting for the pathology on three biopsies that were made of the conjunctive tissue. I may or may not need cryosurgery, or further resection of the lower lid, in which case, the picture may change.

    But I do feel that I have been through, and emerged from, an ordeal INTACT. I may not look the same for now, or perhaps even forever, but I am MYSELF. I front-loaded most of the anxiety, it would seem. And I have renewed relish for living.

    Courage and thanks to all!

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  6. PS.
    Does anyone have a good diet that helps healing of skin grafts to recommend? The doctor said I could drink wine in moderation, but I wonder. Elsewhere I have read that a high-protein diet helps healing, or that arnica taken orally is good, etc. etc. Suggestions most welcome.

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  7. PPS. Something else I learned this week:
    Sneezing with a fresh skin graft on your face/eye area can be very painful and potentially problematic. If you feel a sneeze coming on, look up (tilt your head back) at a light. It makes the sneeze less forceful and deflects the percussive effect on the graft. (My wise nurse told me this trick.)

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  8. Thanks for all your info, and thank goodness for big dark glasses! I too "front-loaded" the anxiety; that's a perfect way to describe it.

    Anesthesia doesn't agree with my system either. I passed out for the first time in my life several hours after my surgery (at home during the night when I got up to use the bathroom)and felt nauseated the following morning.

    I heard that eating eggs is good for healing skin. And would agree with the high protein suggestion (especially fish). Yams too, and multi-vitamins. I'm not familiar with arnica. I would agree about the sneezing although I don't remember sneezing. But I did lean down to pick up some things from the ground and it felt terrible, with a throbbing sensation. I later learned that it's not good to lean down like that when you have just received a skin graft. Similarly, I was laughing robustly at something a few days after my surgery and I think it caused something to pull apart slightly which made the healing take longer. That exact spot is now the most stubborn raised portion of my scar.

    Funny, now you have the underarm of a 16 year old!

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