April 15, 2013
My latest surgery was The Great Implant Swap.
Goodbye Snowglobe Tissue Expanders!
Hello Soft Silicone Implants!
There was absolutely nothing extraordinary about this procedure. Surgery has become a little bit old hat. I drove myself to the hospital, checked in, let the nurse put the needle in my arm, let the surgeon draw all over my chest with sharpie and drifted off to sleep knowing I would wake with my long awaited real fake boobs. Ah. No biggie.
And therein lies my mistake. Thinking this one was no big deal.
Turns out, it’s been pretty mentally disorienting and emotionally exhausting.
Taking off the bandages should have left me feeling more than pleased.
They look wonderful. Really. The placement is perfect. They’re even. They’re a great size. An amazing shape. Scarring is incredibly minimal. Soft, soft, soft. Once my nipples are built, they will truly be amazing breasts.
They just happen to not be my breasts.
I hadn’t given it a single thought. I was so focused on the relief that would come with finally having the uncomfortable tissue expanders removed and once again having the comfort of normal breasts that it never once crossed my mind that I needed to mentally prepare myself to accept breasts that didn’t look like my natural ones.
Ya know, before my mastectomy, everything was agreeably aging together. And it was fine. I was comfortable in my skin and confident in myself.
Now, when I stand naked in front of the mirror, it’s quite clear that my abs, hips and thighs have settled into their 32 year old status while my tits are completely newborn. It has left me obsessing over every flaw and dimple. I feel like I need to run 10 miles a day in order to shed the time that has spread over my human form. Chasing some sort of fountain of youth so that everything can match my boobs.
And when I shower, I feel strange even looking at these breasts. They’re so unrecognizable. Like they must certainly belong to someone else.
I guess maybe I didn’t feel this way with the tissue expanders because I knew they were temporary. I could accept them more easily as just a step in the process. But now… these are my breasts. Outside of adding nipples, there’s no more steps. This is what they will look like for the rest of my life. A much bigger deal than I was prepared for.
I keep having these horrific nightmares about being forced to live with numerous aggressive cats. Apparently (according to some dream interpretation googling) this means that I am struggling with the feminine aspects of myself. Which seems to hit the nail on the head.
I think also in the down-playing of significance in regard to this surgery, these new breasts have not seen any sort of celebration in their birth. There wasn’t a party this go round…. a ritual to prepare me for this new phase.
It’s left me feeling very alone.
And quite insecure in myself for the first time in a long time.
So maybe that’s the next step from here. Planning a celebration for the birth of my new boobies to transform this feeling of physical displacement into one of acceptance and physical rebirth.
Here’s the first step… Cheers, to my new boobies.
End cancer chapter 23.
March 19, 2013
Oof. It’s been a long time since an update from The Cancer Games Arena.
My momma is in surgery as we speak. (We left the homestead this morning at the grueling hour of 4am to get her to the hospital for her 5am check-in.) They are completing the hysterectomy today. The one that they couldn’t complete in October due to the extent her cancer had spread. I’ve got at least 2 hours in this waiting room. Perfect for catching everyone up to speed on what’s been happening.
Her last chemo treatment was in February. Then scans. Dr. K (who is different from my Dr. K) says that the scans are only 80% accurate, but from looking at them, he believes he will be able to remove any remaining cancerous tissue during the completion of the hysterectomy today!!!! And then we’ll know in another week whether or not he wants additional, preventative rounds of chemo. But she will definitely not have to undergo radiation. (Which makes me incredibly happy inside as I found radiation to be the hardest step in the treatment process. I’d been crossing my fingers, hoping she wouldn’t need it.)
I believe he will get it all. I believe Mom will be declared in remission by the end of this year.
I get my real fake boobs in just a couple weeks!!!! I cannot wait to bid farewell to the snowglobes and return to soft, sloping breasts that don’t rise out of my neck and keep me from sleeping on my tummy.
(There has been some confusion about the swapping out of the implants. Most people at work were surprised I was facing another surgery, as it currently looks like my boobs have in fact been rebuilt. (Seriously. My cleavage is ridiculous.) But what I currently have in my chest are tissue expanders that have been used to stretch out my pectoral muscles. The implants are placed under the muscles because there is no breast tissue left to hold them up, only skin. And the muscles had to be stretched, i.e. expanded, over time so my pecs didn’t tear. So I am moving from stage 1 to stage 2 of reconstruction. You can find an illustration of this process here: Two Stage Reconstruction)
I’ve decided on silicone implants as opposed to saline.
The pros and cons lists were equal for both options.
Ultimately, my decision was based on sensation. Dr. T-dubs told me that saline implants would feel like water balloons when squeezed or laid upon. Whereas, silicone gel will feel more like breast tissue.
I have no desire to feel like there are water balloons in my chest for the rest of my life.
Done and done.
T-dubs is making me upgrade to a B-cup from the A-cup I was before tumors made my breast swell.
“Your hips are too wide for an A-cup,” she tells me. She assures me she is not implying that I am fat, just that I have a generous bootie and curvy hips. ”We have the chance to make you as proportionate as possible. We should take it.”
She’s so good with the brutal honesty. I love her.
She is a little concerned about placement.
My left tit currently sits about 1/2 an inch higher than my right one. So my right one looks pretty normal, whereas my left one looks like Super Boob. And not really in a good way. More in the I-have-really-big-implants way. She always said that she would even them out when she swapped the expanders for the implants, but now that the left side has been radiated, she’s worried she won’t be able to lower the left tit as much as she would like. Radiation causes all scar tissue to tighten up, so nothing on the left side will be as pliable as the right. And the right one will settle a little after surgery, whereas the left one will not move due to the tightness of the tissue.
Her current plan is to lower the left one as much as possible. Then place the right one a little higher, so that hopefully, when it settles, they will be even. She also thinks, (given the slope of the breast the regular implant will create, as opposed to the dome of the expanders) the unevenness, if any, will only be noticeable to me or someone I am intimate with.
Ugh… I really hope she’s right. I cringe at the thought of being noticeably lop-sided.
Surgery is April 10.
I had a little bit of a scare this past week. I had an extreme amount of pain in my ovaries and a lot of swelling in my abdomen. This seemed like danger-town for two reasons.
1) My new and improved super-dupe high risk for ovarian cancer.
2) The tamoxifen I am on (and will be on for 3-5 years) can cause ovarian cysts and endometrial cancer, which is much harder to battle than breast cancer.
I had a pelvic ultrasound yesterday. I did in fact have some cysts on my ovaries, but nothing to worry about. They were caused by some sort of friction during ovulation since my lady parts have started to work again. (Chemo couldn’t keep this girl’s fertility down! Hooray!) And the swelling… embarrassingly… was, as Dr. S said, “a tremendous amount of bowel gas.” A side-affect from the meds. Humiliating and comforting all at the same time. (Puts paper bag over head, a la Charlie Brown.)
Also, this happened…
My new baby niece Polly Karen. Named after my mom. (Though I’ve been calling her Polka Dot.) It was love at first sight.
My sisters have organized another awesome fundraiser for me and Mom! (Even after medical tax cuts, I’m still buried pretty deep in treatment payments. Why is anyone opposed to universal healthcare?)
If you are close to Jonesborough, TN, come on out to Contra for Cancer, part deux!!! Even if you don’t want to dance, the music and fellowship will be worth it. And the snacks. Mom’s making her world famous kool-aid. No one wants to miss that.
And if you aren’t close to Jonesborough, but would still like to contribute, you may do so here: The Cancer Games
But I hope many of you can make it to the party. We’ve got a lot of things to celebrate these days.
End cancer chapter 22.
December 23, 2012
One year ago today I was diagnosed with breast cancer.
I vividly remember all the tests leading up to this day. Strongly recall the evening before… AJ coming home to find me eating an entire cherry pie straight from the bakery box, chain smoking cigarettes, drinking whiskey and crying (I know, I know. Not my best decisions. I was under a lot of stress.)… and curling up in bed that night to sleep, all the while begging God Above to please please please let it not be cancer.
But it was.
I also remember how grateful I was to have AA in the doctor’s office with me the next morning to keep me steadily laughing… even if it was laughter of the nervous persuasion… and holding my hand while I received the hard truth.
Shortly after my mastectomy, an acquaintance who had stopped by to visit with me, in full-blown awkwardness over not knowing how to react to the situation at hand, asked me, “What have you learned?” It made me laugh at the time. It was such a bizarre thing to say in the moment.
But a year later, I seem to have learned quite a lot. About myself. About the super-humans who grace my life with their presence. About what perseverance, strength, love, friendship and beauty really mean. And looking back at all the pleading and praying, endlessly hoping until the very last possible moment that it was not cancer… I fully realize that this diagnosis has, strangely, been a blessing and not a curse.
Don’t get me wrong. If I had a choice, I obviously would have chosen ‘not cancer’. But I have no anger over the events of the past year. And I am grateful for the lessons cancer has revealed to me; for the deepening of friendships cancer has given me; for the doors to healing cancer has opened for me.
I am indebted to each of you that has shown support, emotional and financial. I cannot thank you enough for your investment in me. My life. I promise to do good things with it and hope that will repay you all for your kindness and care. You have honored Christmas in your hearts and have proven to keep it all the year. I will try to do the same.
End cancer chapter 21.
December 21, 2012
“Here we are… at the room… ” This is a line from Ash Tree, written by the incredibly magical GHE. I said it every day as I walked into the room with the laser, preparing for radiation and willing the room to be my portal; leading to life for me and death for all the things holding me back. And I said it for the last time 1 week ago today.
Radiation seems to have been the hardest part of treatment to get through. Maybe because I was in an unfamiliar place without my army beside me. Maybe because treatment was every single day and not just once a month. Maybe because it is the end of the year and I have been living through this for a full twelve months. But something about it certainly wore me down.
I punched the gantry as I walked out of the laser room for the last time. (Something I’d had the strongest urge to do for weeks. But usually the urge hit while the gantry was passing over me with the beam on. It took every ounce of my willpower to keep from doing it. The fear of moving while the beam was on and accidentally getting radiation in my eyeball was the only thing that held me back.)
I am extremely happy to be home.
I have to give a tremendous thank you to the fine folks at Circle of Peace Church of the Brethren in Peoria, AZ. They are true to their word when they speak about the radical hospitality and extravagant generosity they aspire to create in their community. These wonderful people took me into their homes, fed me, cared for me, watched over me and treated me like family. I would not have made it through my extended radiation vacation without their love and kindness.
My skin is trying to heal. I won’t post pictures because it is in the grossest stage ever right now. (Seriously, this description is going to be gnarly.) The skin is peeling off, just like it would if I had been sunburnt. Except when it comes off, it’s thick and black. Like super-dupe burnt for realsies. It even smells like burnt flesh. I’ve got 4 quarter sized blisters… these formed in the spots where the radiation therapists would draw X’s on my chest and then put a sticker over the mark so they could use it for days in a row without re-measuring. Something about the tacky part of the stickers irritated the burnt skin to the point that it blistered. The worst part is that the blisters keep splitting open. I have to keep bandaids over them so I don’t bleed or leak blister-goo through my clothes. (I told you… gross.) Dr. K told me I’d be all healed up by Christmas, but I am starting to doubt him.
It’s okay, though. I’m so happy to be done with treatment that it just doesn’t matter much.
I won’t know for sure until they do scans in 6 months, but it is possible that they’ve gotten it all.
Keeping my hopes up.
End cancer chapter 20.
December 3, 2012
Ok… lasers are cool and all… but I don’t wanna do it anymore.
This is what my chest looks like closing out week 5:
The redness continues about halfway down my tummy and across my left side. It has become difficult to do any sort of physical activity as my skin is so dry… despite moisturizing 5 times a day with all my different prescribed lotions/creams…. it cracks and pulls with any movement. I have never been so burnt in my life. And there’s still two weeks to go.
The blues have set in pretty hard core. I just can’t do anything. No yoga. No running. And the fatigue is so overwhelming at this point, I can barely make it through a chapter of a book without falling asleep. So, I’m kinda feeling like a waste of space.
I did get to travel home to TN for Thanksgiving last week. Which was immensely good for me. And for my momma. I only wish I’d had more time there to see everyone I needed to hug.
I also was taken on a surprise trip to the Grand Canyon this past week which lifted my spirits. Next time I go, I trust I will be able to do more hiking.
This is only temporary. I’ll be feeling just fine by Christmastime, I’m sure. Killing cancer is simply hard work.
End cancer chapter 19.
November 10, 2012
Another week down.
Daily zap time is certainly starting to wear on me.
My left tit is slowly but surely turning pink. As if the skin is burning. My chest has started to break out from being moisturized so frequently. My neck is extremely stiff from keeping it turned to the right while I lie on the LINAC couch for 30 minutes everyday. And I can feel tightness in the scar tissue (from the mastectomy) underneath my skin. (I mostly feel this tightness in the mornings when I do yoga. I can feel the scar tissue up under my left arm being stretched out again like it was being stretched during physical therapy in the weeks right after the mastectomy. It’s just slightly painful.)
And I had such high hopes of getting so much writing done during these ‘vacation’ weeks. But writing keeps taking a back burner to… sleep.
I sleep 12-16 hours a day.
And I could prolly sleep more.
This is not the same kind of zombie tired I experienced during chemo. I’m not groggy. I’m not fighting to stay awake or struggling to catch my breath. I don’t feel like my brain is sitting in a cloud of chemicals.
I’m just drained. Physically and emotionally. I don’t feel like myself.
I actually started crying on the LINAC couch during zap time yesterday. It’s like I could feel the laser draining more of me out of my own body.
And I know it’s just killing the bad parts of me… the parts that are holding me back… but it’s exhausting the good parts of me.
End cancer chapter zzzzzzzzzzzzzz…
November 6, 2012
First full week of radiation down.
Here’s how it works:
Every day I go here:
Staff is great. I walk in. Everyone says, “Hey, Gwen.” Just like an episode of Cheers. The receptionist buzzes me back right away. I go to the changing room, get into my wonderfully fashionable open-to-the-front gown and then head back to the radiation room where The Machine lives. I verify my name and birthdate and my favorite tech, J, tells me to head on in.
Once in the radiation room, I slip off my gown and lie on my back on the LINAC couch.
(The radiation room where I receive treatment looks almost exactly like the picture above.)
Once situated, J and another tech (sometimes E, sometimes T) come into the room to position me. They batter a lot of medical jargon back and forth across my naked chest (really the most awkward situation I’ve ever been in) while they draw arrows and lines all over me with red and black sharpies. They push and pull my body certain ways on the table (“Don’t help,” they always say as they tug me in varying degrees of up, down or sideways.) making sure that I’m lined up just right. They move the table up and down to get the right height. Put my arms in slings above my head. And turn my head to the right to keep my esophagus protected from the radiation beams.
A green light-beam shoots at me from either side of the room. They have to make sure the one from the left side of the room lines up with the little purple tattoo on the left side of my body and the one from the right side of the room lines up with the little purple tattoo on the right side of my body. They also have to make sure that the red beam coming from the gantry (the big arm on the LINAC) is hitting the little purple tattoo in the center of my chest.
Once I’m lined up just right, they cover my chest with this metallic blanket. (I don’t know what it’s called, but it looks exactly like Harry Potter’s invisibility cloak.) This is to trick the machine into thinking I have more body mass than I actually do so that the radiation spreads as evenly as possible. They also have to get this thing placed exactly right. So they match it up to some of the lines they’ve drawn on my chest and once it is on all the correct spots, they wrap me and it in masking tape to keep it from sliding.
“Okay. Here we go,” J says.
And then the techs run out of the room. (Cause radiation is bad for you, ya know.)
And once the music has established, the machine begins to move.
The gantry rotates around my body. Shooting radiation at me.
I have to lay completely still.
There are these little metal bars (kind of like what you would see in the mechanism of a music box… what the thingy strikes against to play the tune, only much larger) inside the head of the gantry that move back and forth, opening and closing, so that the radiation only hits the right parts of my body as the gantry circles me.
It doesn’t feel like anything. Occasionally I will feel a flush of heat in one very concentrated spot. It feels similar to the sensation of the very beginning of a sunburn. The moment you know you should get out of the sun for the rest of the day.
The gantry circles me a total of 3 times. Then J appears and says, “All done.”
I get dressed. I go home.
So far, I haven’t noticed any change in my skin. I use aquaphor right after each treatment and Burt’s Bees After Sun Soother every night before I go to bed. I use my amazingly gentle, skin calming Squid Balm soap in the shower every day. Dr. K says this is an excellent regimen to keep the skin as healthy as possible throughout treatment. But he suspects to notice a burned look on the left side of my chest (the side that is receiving the radiation) within the next couple of weeks.
Really, the worst part right now is the forbidden use of deodorant.
No deodorant while living in Phoenix for 6 weeks is a harsh fate.
Oh… except now it is 7 and 1/2 weeks. They wanna get some extra strong blasts in at the end of regular treatment. (“You have a very aggressive cancer, so we have to treat it aggressively,” I was told for maybe the hundredth time.) So I am now slated to be here until December 14th. I’m not gonna lie. Being away from work for this long is a pretty substantial financial burden. (Now is the part of the program where I shamefully and embarrassingly remind readers about this: The Cancer Games)
The days are lonely. Treatment takes up about an hour and a half of each afternoon. And that’s it. I have found it surprisingly difficult to be in Phoenix without my fleet of friends. It’s hard to get through the days without hugs. I am incredibly grateful to be staying in a place where Omie is able to be with me. (The house where we are living was a last minute find by an unexpected ally.) I would be Patsy Cline Blue without my Omie Lou.
Here are some pictures from our first week here:
And last but not least…
The physicist who blueprinted my body and charted my radiation treatment plan (yes, I have my own physicist – Dr. S to the Y) walked me through everything this week to show me how they place the beams to ensure that nothing hits my heart or my lungs. He let me take video of all the modeling and mapping.
It’s all incredibly complex and undeniably cool.
Here’s the video of the mapping of me:
End cancer chapter 18