Friday, November 18, 2011

HOUSTON, WE HAVE A PROBLEM

I'm at a follow-up with my plastic surgeon, Dr. C. Unfortunately, he's not 100 percent happy (his words) with the way my right incision is healing. He used the term "delayed healing." It's worse on the right (cancer side) than the left. My skin is red on that side and looks bruised. I have surgical tape on both incisions, but beneath the tape a dark area is visible. Dr. C. cautions me to pay close attention to this area, because if it gets any darker, that means my skin is dying.

Necrosis? Oh, joy.

I'm to use Xeroform as a wound dressing. But first I apply Bactroban (an Rx antibiotic ointment), which I then top with a strip of Xeroform, which I then top with gauze which I then tape to my skin. I’m to continue to wear my compression vest 24/7. (Confession: It’s become a rather comforting contraption.) And if my incision doesn't decide to heal, Dr. C. will decide whether to surgically reduce the pressure in the tissue expander by removing some saline. Super duper!

And as if all that weren’t enough, Dr. C. is leaving the country in four days — for three weeks. Yikes.

I get home from the doctor, pull out my digital camera and start shooting close-up images of my incisions. I do this each morning. Husband finds it odd. I tell him it’s the only way we can be objective; from day to day things look fine, but if you compare Day 1 to Day 3, well, you can see a difference. (Note to all surgery patients: Photograph your healing journey.)

A few days go by. After my shower one morning, I inspect the wound. I don’t like the look of it. More redness, more darkness at the incision line (under the surgical tape). I take more pictures.

My dear friend M. comes over for lunch. But I'm in a bad mood — definitely not like me when I am spending time with friends — and I can’t seem to shake it. M. asks why I’m feeling unsettled, then encourages me to call my doctor. It’s 1 PM on a Friday afternoon. What are the chances I’m going to reach anyone? But lo and behold, Dr. C.’s nurse answers the phone, and I lay my worry out there like a blanket on a fire. But she is not alarmed. The redness I'm experiencing sounds normal, she says. She’ll mention to Dr. C. — who happens to still be in the office. Psyche.

I hang up and feel good that I’ve taken action. Yet something is still nagging at me. Finally, a light bulb goes off: Email Dr. C. a few photos so he can see exactly what I’m talking about! (This also saves me a trip to his office, not that I could get in on a Friday. Just sayin'.) I call the nurse back and tell her to check the JPegs I just emailed. If I don’t hear back from her today, she says, that means Dr. C. thinks things look fine and I should keep up with the Xeroform program until he returns from overseas.

OK! Now I can finally relax. I enjoy the rest of my lunch with M. and she leaves in the late afternoon.  No call from Dr. C.  I take a nice, long nap, then rummage through the refrigerator for something to eat.

While I am downstairs, my cell phone rings upstairs. I don't hear it. By the time I realize I have a message, it's 7:30 PM.

Guess who. Yup.

Dr. C. apologizes for messing up my weekend, but he wants me to meet him at the hospital tomorrow morning — yes, Saturday morning — at 5 AM. He has secured a surgical room for what he is calling a “minor intervention surgery.”

I don’t have time to think, to worry, to even wrap my head around the fact that I am about to have another surgery just 16 days after my bilateral mastectomy. (Cancer: The gift that keeps on giving.)

Husband and I go to bed early, get up at 3:45 AM and drive to the hospital in the dark. I’m prepped and wheeled into surgery by 7:30 AM. Luckily my anesthesiologist hand-tailors an Rx cocktail (along with a patch behind my ear) so that when I came to, I am alert and not dizzy or nauseous, and am able to go home 90 minutes later. (So not like last time.) I am also not in any pain.

Turns out too much pressure on my tissue expander was causing my skin not to heal. I have necrosis on the top of my incision, but there is also a spot that is necrotic under the skin as well — and that is the dangerous part. If we don't fix it now, I run the risk of losing the expander and starting over again. So Dr. C. removes 50 cc's from my right expander (originally filled to 400 cc's), debrides my wound and re-sutures my skin.

I feel like I dodged a big, necrotic bullet, and am proud of myself for staying on top of this, for diligently taking photos of myself, for coming up with the idea to email them to the nurse, and for trusting my gut throughout. This surgery wouldn’t have happened otherwise. (Listen to your instincts, my friends, even if it means calling your physician on a Friday afternoon and having surgery on a Saturday.)

The following day, just 30 hours post-surgery, I show up at a party to meet our neighbor’s first grandson. People are surprised, even shocked, to see me; they tell me how great I look, that they can't believe I just had another surgery. Me either. Even though I am light-headed and have very low energy, it still feels good to get out among the living. I even forget about my pressurized chest for a couple of hours.

The next few days are hazy. I feel woozy, but we manage to take in a matinee. (Again, a sense of normalcy I desperately need.) And yes I'm still watching these incisions like a hawk. Snapping pictures every day, oh yeah. And applying my ever-trusty Bactroban and Xeroform.

But my smile belies how I'm really feeling: blah, depressed, unfocused. What does going through all this cancer %$#@ and subsequent complications mean? What's the point? I feel like there is something I am yet to do, something bigger, but I don’t know what it is.

Three weeks post mastectomy, one week post second surgery, and I wish I could say I have some energy back, but nowhere close. I have discomfort and pressure on my chest 24/7, feel like there's fog in my head, have a headache that comes and goes. Internally, I think I'm still 30 years old, so am expecting my body to bounce right back. Then I remember I'm really 52. So I need to cut myself some slack. I need to become more patient — a virtue with which I will become very well acquainted in the coming months.

13 comments:

  1. Oh, honey -- I feel your pain. Literally. I had a very similar situation 2 wks after my bilat mastectomy, too, with a 6 am Saturday surgery. Ugh. Kudos to you for trusting your gut and being pro-active. That is huge!! The photos and the phone calls were totally the right thing to do.

    I also get the blah, depressed, unfocused, unsure feelings too. I keep thinking that once we get through the hard part, things will become easy, the rewards will manifest, and the answer to "what now?" will appear. Fingers crossed that it happens soon. Hang in there, my friend. I think you're a rock star!

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  2. Hi Renn! You don't know me, but I follow your blog. I had a bi-lateral masectomy with immediate reconstruction done the end of July. I had no problems (thankfully) and in two weeks I will get the tissue expanders removed and the implants put in. I am sorry for the problems you had and am proud of you for being pro-active about your own health. I have found that is sooooo important! Like you, I take nude pictures every step of the way. My sister laughs at me (she did this last year and never took one picture). I also wanted to compare the process. And it was brilliant that you were able to email those pictures to your doctor!

    Please be patient and your healing will come. Even with no problems, it took me a good six weeks after my masectomy/tissue expanders to begin feeling better and getting energy back. I say that these tissue expanders are not for the weak...lol...but I've heard that the exchange surgery is an instant relief! Hang in there!

    I have found a "purpose" in my cancer (I also called it the gift that keeps on giving). I knew nothing about breast cancer before my mom, my sister, and now I was diagnosed within 15 months. I have absorbed any information I can about it and feel knowledge is power. My "purpose" now is to educate other women. In talking with other women, I've learned they know very little about it either and most live with the false security of having no family history of it. I'm able to educate them to get their mammograms and that most women diagnosed do NOT have a family history! I also tell them to not count on feeling a lump! If I can help even just one woman get an early diagnosis, then my cancer has not been for nothing.
    http://cindys-cancer-journey.blogspot.com/

    I'll be praying for you....Cindy
    I have a blog, if you'd like to visit it.

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  3. Another amazing post. You would think things could just be simple once in a while wouldn't you?

    You were so smart to take photos. I wish I had started taking photos before my bilateral even. Then I would have had something to go by even recently when I went in for tattooing. It's really hard to pick out colors, size and stuff. Lord, can't believe I just typed that. I'll probably post about tattooing too eventually, so what the heck.

    Hope you are doing well by now. My best.

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  4. Pink: I didn't know you had a similar situation. (Double sistahs!) I think part of the answer to "what now" is already happening... right here, right now, with our blogs. ;-)

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  5. Cindy: Thanks for stopping by. So sorry to hear BC has hit so many in your immediate family. Sounds like you have a lot of great info to impart. Wishing you a smooth segue to "squishies" and I will def. check out your blog!

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  6. Nancy, I hear you on the pics. I did manage to remember to take pics before my BMX. Did your PS take any? Mine did the day I decided to go forward with him as my PS.

    The tattooing... now that's the fun part. (Fun is definitely re-defined after BC!)

    ;-)

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  7. Renn ~ I am applauding your loudly! You MUST be your own advocate, and if necessary contractor, when it comes to every aspect of your medical care. Most docs will not admit that they are human, nor that so much is still such a mystery. I will share that 2 years done with reconstruction and I still have too many recurring moments wondering WHY I opted for reconstruction. I am in constant pain; the nerves in what was left of the breast tissue scream in protest with every movement of the implants; and the incision sites and scar tissue have lodged a burning rebellion even to this day. Keep trusting your instincts. Never be put off by the responses of the medical doctors or their minions. Each and every step of this journey is about you, and don't let the docs every forget that. BTW - zombies are very vogue right now. Use it!

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  8. TC: So true, so true. (About being my own ever-vigilant advocate.) I'm sorry to hear you are still in pain 2 years later though. ERGH. Wish this ride were a little easier. But it's like we're stuffed into rockets and shot off into space and weeeeeeeeeeeeeeeee/crash landing/now what? I like the Zombie idea!!

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  9. Thank goodness you took & emailed those photos!! And kudos to your surgeon for acting on them.

    The whole thing is huge, though, and you should count on cutting yourself some slack for a loooooonnng time. Although I hate saying that. This whole thing does such a number on us, on our immune system, our bodies, our psyche, our energies. Really takes a toll we can't begin to anticipate, no matter how 'smoothly' everything goes. But you are being a smart patient and that is probably the most important thing. We really have to listen to ourselves & get the right people to pay attention when we thing something is just not right.

    I was totally gobsmacked by how long it's taken me to recover from the whole sleigh ride. And I still don't feel 'normal' over 3 years later!! GRRRR! But I've gotten a whole lot better at self-advocacy!!

    Lots of love & good healing, Renn.

    xx

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  10. Thank you, AA! Godsmacked is a good word for all these medical shenanigans we have to endure. Self-advocacy is tiring but essential. Chins up, chests out, carry on! Thanks for stopping by.

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  11. Hi Renn,

    You are one smart lady. I would have never thought to take photos! You totally advocated for yourself. Good for you!

    Give yourself time to recover and be patient with yourself. I know it's easier said than done, but as someone who had a double mastectomy, I know that recovery can be slow.

    Hang in there.

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  12. Beth, you're so right! Thanks, my friend.

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  13. Renn....

    Good LUCK tomorrow!!!

    A fresh new TE.... I missed so much of everyone's stuff but let me tell you sista, GREAT job on the photo shoot!! I am big on self advocating but sometimes the obvious escapes me...... Being told to meet at the hospital in under 12 hours.... ummm, ominous, dire, scare the daylights out of me... but all's well that winds up with a new TE.

    Going over to cindy's blog.... seems she and I have lots in common..... 15 months, mom, sister and cindy, too. She's singing my song....

    Renn.... you are a good friend... I am so glad we "met"... 52..... when you catch me at 55, you too will be slapping on the silly and fist pumping in some crazy place with those Jersey Shore kids.... Aging backwards my friend.... care to join me????

    love to you..
    xoxoxox

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