After my mastectomy, I decided to get a “bean bag boob”, as I lovingly call it. It was a bean bag shaped like a boob, it could go in any water, it did not set off the airport alarms and it was cheap. Since I wanted a permanant fix I decided this would be ok until I had reconstruction surgery. The first day back to work I wore a normal bra, and while talking to a group of people I noticed a universal puzzled look on their faces and silence. Finally someone said, “Um, Lori, I think something is peeking out of your shirt.” I looked down and there was the top of my bean bag. I quickly decided I had 2 options: cry and leave, or have a little fun with it. I have a decided flare for the crazy and quirky, so I decided on number 2, grabbed the bean bag and tossed it to a friend. After a moment of awkward silence, the room exploded in laughter and we threw it around for a bit before I rescued it and plopped it back into its’ hidy hole. But I learned my lesson: the mastectomy bras are a much safer option. But I hate them, they are ugly and I have to shove my bean bag into it every time I change bras. As I am right-left dyslexic, I have to twist myself into many pretzel shapes before I figure out which side of the bra and which side of the bean bag should go together. You would think that after 2 years I would have it figured out by rote. Nope. My neck has hyperextension injury from the constant upside down configurations I have forced it to do in the name of “getting it right”. While my bean bag boob has been my close companion for 2 years, there are definite disadvantages. Over the course of the day, the bean bag and my other breast become decidedly unbalanced, and I am always adjusting. And bending over definitely shows that I have a one sided cleavage. And when I forget the bean bag I am a bit mortified, even with my quirky threats to remove it when someone ticks me off. While I can handle a load of embarrassment I have my limits. So, deciding that I needed to retire the bean bag, I searched for 6 months after chemotherapy ended for the right procedure, and decided that implants were not for me (partly based on the results of the 8 year study that showed women who had reconstruction were much happier 8 years later over the women who had implants). And it makes sense, implants dont sag with the other breast, so imbalance occurs over time. And they dont shrink or expand naturally with any weight gain or loss. And they require maintenance. Of course, if I get brutally murdered, they can identify me with the breast implant number, but I decided not to put this into my equation for implant pros. But I didn’t like the transflap procedure due to its post surgery problems. I finally found the surgery I wanted (a new procedure called the DIEP–deep inferior epigastric perforator), but I couldn’t find a surgeon in the Kansas City area who performs it. I did not want to go to Texas or California for this, as my oncologist at KU said I would have to go to another state for it. But for some reason I decided to look at KU plastic surgery division and found the only surgeon in a 300 mile radius who specializes in the DIEP reconstruction procedure. Of course I was furious with my oncologist, but he said this was not advertized even to his section and he just found out about it himself. It took 4 months for an appointment and 4 months for the surgery due to the number of women wanting this procedure (hence the reason why it isnt advertized). Dr Buescher is amazing, knowledgeable, kind and patient, and probably one of the best surgeons I have ever met (both as an RN and patient). But it doesn’t matter what kind of education you receive, the shock of this huge surgery is overwhelming. It was G-A-A-A-S-T-L-Y!!! You really need to mentally prepare yourself as it is a HUGE surgery. Its like getting hit with a bomb and sewn together. I was literally cut in half and all the tissue in my lower pelvis removed and reconstructed in a breast form and attached to my chest with 8-12 hour microsurgery. I had a very difficult post op course that included acute kidney faiure, fluid overload, hypoxia (low oxygen levels), delusions and double vision. I should write a poem about it, but I think the experience is so bizarre that readers would accuse me of making it up. Of course, now my brain is revolving around this and I may have to suck it up and write about it. If nothing else, in retrospect the hallucinations were fascinating. But my graft and incisions (all 52 inches of them and yes FIFTY-TWO) had no complications. Going home with 3 drains and a pain pump was extremely difficult. I could only stand crunched over holding my abdomen. I could barely walk. I couldnt laugh, and I laugh loud and hard. So anything funny was painful as I would start to laugh and end up sucking air and squeeking like a baby pig. It took an hour to shower and change all my dressings. And I looked like Frankenstein’s monster as the incision glue is black, and I am milky white. Now 2 months later I am better, but I have constant muscle and incisional pain from the 24 inch abdominal incision. The nerves are so “mad” that I can hardly touch my skin. And I have large numb areas all over my body. I hate the scars, they are shocking, but I love that I no longer have to wear my bean bag! In fact, one of my first memories (and I have only bizarre 15 second memory snatches of my horrible post op course) was realizing that it felt like the new flap has always been there. I wish I could photo my new breast, but I think I would be flagged for porn……Although I was stripped naked by 2 groups of friends as soon as I got back to work! One of my frustrations are that there are very few real (as in accurate) pictures of the DIEP procedure on the internet, and in the interest of education (since I am a nursing educator), I may ask my surgeon to put me on her site…..maybe…..
So I hope you enjoy my last (hopefully) poem on breast cancer. No, I have to do one on the post op drama, it is very interesting and I need some cathathism (if that is really a word). While I have another surgery planned, I hope it is not “poem worthy” as I am ready to move on to more interesting topics!
“A New Hope”
A few months after chemo ended
I looked for the right procedure,
choosing to have my body mended.
I was tired of my breast “bean bag”.
Imprisoned, dependent, bereft, unfree,
my “boobs” were uneven, the real one sagged;
a yawning blankness where my breast should be.
I was quite frustrated when I discovered
the reconstruction “fix it” was hard to choose.
Breast procedures, while insurance covered
left me lost, undecided and utterly confused.
This choice I was making was permanent!
Would it fit my body firmament?
I asked, researched and was left aching.
I could not find a right fit for me.
These half choices were heart breaking;
the desired procedure across the country.
Patiently, I waited, wanting it to be right.
My final choice, the DIEP, I now knew.
One day I searched KU’s web site
and found the perfect plastic surgery crew.
To my impatience, shock and dismay
I was told there was a four month wait!
I never thought the visit so far away;
talk about an impotent, impatient state!
The length of time was worth the wait
Dr Buescher the perfect suggestion.
She calmed my undecided excited state
and answered all my anxious questions.
A four month wait–the first available date!
This procedure eight to 12 hours long;
For she only did two of these a week
to be ready if something goes wrong.
Surgery day FINALLY here!
I was in a bit of a fright.
For I had some real fears
that surgery wouldn’t “go right”.
The surgery was a great success;
my flap with perfect blood flow.
But I turned into a medical mess!
I was delirious and did not know
fluid over load, anuria, anoxic stress
was causing medical team duress.
After two days I started to pee
and moved from ICU on day four
as my status quickly improved.
But pain started to outpour
and rapidly soured my mood.
Pain consumed me like a wind blown fire;
unrelenting, searing hour after hour.
Tolerable only due to a pain wire;
I was to confined and enslaved to its power.
The mirror showed a sight profound:
Was fifty two inches of incisions
worth a new scarred breast mound?
But there was no “restart” to this decision.
Yes, I had spun the rulette wheel around
but I wouldnt loose my final body vision.
I know my body and breast flap will heal
but these scars will always tell my tale.
For while I will never be perfect in scale
I have won the hand I was dealed;
Cancer a dimly remembered, temporary fail
and my ache for a breast, forever repealed.