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Today’s blog is informational. In other words, no photos of the woods! I figure that some of you out there might be interested in knowing some details about the surgeries I had yesterday in case you consider them for yourselves. If one chooses breast reconstruction, there are a surprising number of subsequent choices to make.

As you know I had a TRAM a year ago to reconstruct my right breast following a mastectomy and tissue expander placement. Often but not always, women have additional procedures done following the TRAM (or implant placement) to increase symmetry between the reconstructed and natural breast.

Yesterday, Dr. Welk made a revision to the fold underneath my reconstructed breast. That was actually the biggest surgery in my view, because it required the largest incision and it is the most painful of the incisions. He also used liposuction to get fat to inject into two places on the upper half of my natural breast. (Well actually, fat is not injected into the breast tissue, it’s injected into the subcutaneous fat to reduce the likelihood that the injection will make cancer scans harder to read.)  He also injected fat above the TRAM to fill the space left by my mastectomy as Dr. Beatty removed a lot of tissue all of the way up to my right clavicle, due to the location of the cancer. Consequently, I had a little hollow spot there, certainly something I could live with but when he offered to fill it in, I agreed.

Dr. Welk took the fat from two places on my abdomen (on the TRAM scar so no new scars there) and two places on my thighs. The incisions were symmetrical, one from each side of my abdomen and one from each thigh. I counted all of my bandages when I came home yesterday and there were 10 incisions. Woo hoo! A new record! Nine of them are tiny. The one under my right breast is not, which is why my right side was super achy yesterday and pretty achy today. I have been taking over the counter pain reliever since I got home yesterday afternoon and not very diligently. It’s not painful unless I stand up and I figure that pain is a good deterrent for me against exerting myself too hard. Hubby will tell you that I am not a good patient in this regard. I don’t ENTIRELY agree but I get his point.

Ah yes, there are also the needle sticks to my left arm, all three of them. I have what they call in the IV placing biz, “small, deep, and rolly veins”. The successful poke was to a vein on the back of my hand. I had an IV placed there when I was in labor with my daughter. It hurts more, I think. Good thing I was soon asleep. I am pretty bruised up in both the fat harvesting sites and in the injection sites. The bruises don’t hurt a lot. They are just purple, which is not my favorite skin color. Finally, I had difficulty getting up from the couch yesterday. I had my husband help me up the first time and then I was able to get myself out from then on, just not very quickly. This morning, I was able to get out of bed pretty easily, which is harder than getting up from the couch.

Even though I am pretty swollen, I can tell that I am also more symmetrical. Fat can be transferred in only small amounts at a time, so one has the option of subsequent procedures to shape an area. For those of you taking score at home, here’s a list of my surgeries:

1) Lumpectomy2) Lumpectomy (re-excision)
3) Right side nipple sparing mastectomy
4) & 5) Delay procedure (to my surprise, this hurt like Hell, by the way) and tissue expander placement.
6) Skin graft to repair necrotic tissue.
7) Pedicled TRAM reconstruction.
8) and 9) TRAM revision and a medley of fat transfers.

Yeah, that’s a lot of surgeries. One of my patient’s moms, who has a wild sense of humor said, “Dr. MacKenzie, don’t go all [Heidi] Montag on us. We don’t want you to get addicted to plastic surgery.”
I got a good laugh from that one. Not everyone would have and that’s just a reminder that there’s no one way to be a breast cancer patient. Your coping style may be different than mine and your treatment decisions may be different, too. Even with all of my bruises today, I am happy with my choices. Also, my husband is waiting on me during my convalescence, which is pretty darned sweet. Though I think if I asked him to feed me grape one by one, he might balk a little. 😉

I often read my old posts as a way to process my life experience. Today I was reflecting on the past year and I re-read my post, “No Words”. I can’t stop crying. I had a good day. But I read this post about the death my friend, Gina, and the tears just keep rolling. And I’m doing the “boo hoo hoo” loud kind of crying. John kept asking me what he could do for me and he finally just came into my office and gave me a big and welcome hug. I am not despondent. I am just sad that such a wonderful woman died suddenly and was not able to be there for  the rest of her life or for the life of her son who was still an infant when she died.

I am not totally unselfish. I want to be there for my daughter. When I wrote this post, I was afraid that I would not be able to be there for her. This will always be a worry. At most times it will be so much more manageable. It will not elicit “boo hoo hoo” crying. But it will always be a worry. I am a strong woman with lots of support. How do people who are less strong and who have less support deal with this? How? Cancer sucks! People out there who have not dealt with this, you can tell me that I am a drama queen all you want. But I can tell you, as a strong and healthy person, having had a life threatening illness, one that can come back, and thinking about taking care of your child, WOW, CANCER SUCKS!.

You’d think that Gina had died of cancer. She didn’t. She had a brain aneurism and died in her 30s. I could go on about how unfair this was. But we are part of the natural world. It is not governed by justice or fairness. It is nature and some chaos is to be expected. But it still hurts and it hurts A LOT.

Every August, for the past several years, I get an unexpected wave of sadness. Then I remember that my friend, Gina died in the month of August. I can’t even remember how long ago; it must have been at least 15 years. Gina was just a beautiful person and friend. I met her in graduate school. I was in the clinical psychology program and she was in the counseling psychology program, which was housed in Education rather than in Arts & Sciences. We met through our mutual friends, Annette and Ellen, who are also now counseling psychologists. Gina had just returned from her clinical internship to finish her dissertation, her remaining Ph.D. requirement. She was also recently divorced.

Gina was so fun and such a kind-hearted person. After she graduated, she ended up taking a job at Duke University in onco-psychology. Yes, she worked with cancer patients. Gina used to talk about how happy John and I were together. “Elizabeth laughs when John tells stories you know that she’s heard a hundred times.” She and Annette were quite taken with John and referred to him as being the “most marriageable man” that they knew. Not that they thought he was available; they just thought he was well suited to marriage and were looking for someone like him. (And believe me, this is not the first time my girlfriends have talked about my husband this way to the point when my friend, Cheryl would even say, “I’ve got to get myself a computer nerd.” It was just fine.)

I suspect even more than being re-married, Gina wanted to be a mother. She eventually did marry her husband, Bob. We flew back to North Carolina for the wedding reception and John was the official photographer at the small family-only service at Coker Arboretum on the UNC campus. He took some really beautiful shots.

Gina did have a baby, a beautiful boy. We were so happy for her. A few months later, Annette called and I answered. “Gina died.” She’d had an brain aneurism and died while her husband was driving her to the hospital. There’s a boy in North Carolina who only knows the mother who waited for and wanted him so much through a video that Annette made. When she found out that Bob and Gina didn’t have a camcorder, she borrowed one and took footage.

I was wondering today why I was feeling her death again like the day Annette called. I looked down at my calendar. In fact I feel sadder than I have felt in many years. Today is August 8th. Today is the anniversary of my mastectomy. Today is a reminder of what I have lost and the greatest losses were not of my breast or my femininity, or my sense of self.

The loss I feel today is the loss of the ability to take for granted that I will be able to be alive for as long as my daughter needs me.

I have learned to be happy, to be appreciative, to have abundant and overwhelming joy in my life. But some days are just sad and that’s as it should be. In our sympathy card, I wrote to Bob, “So many words describe what Gina meant to us. No words describe our grief in losing her.”

Tomorrow is a new day. But today is the one I have right now.

There are no words.

As you know, I have been working to break the brain draining choke hold that nearly a year and a half of bad sleep has wrought upon me. There have been peaks and valleys but mostly, I am sleep deprived. And now in the northern latitudes, it has gotten very cloudy and very dark. Without the long summer days to give light to my mind, I find myself being incredibly and totally fatigued during the day.

And it hasn’t been like I haven’t been doing anything to help myself sleep well. I exercise every day, I meditate, and I try to keep my stress level to a dull roar. I also started taking Chinese herbs for sleep prescribed by Dr. Wang, who does my acupuncture. They taste like a combination of dirt and mushrooms. Surprisingly, they aren’t that bad. At least they don’t taste like feet. I also take magnesium citrate and melatonin, as recommended by my naturopathic oncologist. The magnesium also helps with the leg cramps I get from tamoxifen. I have many patients as well as my daughter who take melatonin with very good impact on improving sleep onset (falling asleep). However, I’m not sure it’s doing anything for me.

I saw my psychologist last Friday and she gently suggested that I might ask my physician for Ambien to help me sleep though the night again as lately, I have been waking up 6-8 times a night, often with night sweats, which are side effects from Lupron. I have been trying to solve this problem on my own. I also started using blue light therapy since my energy level usually gets lower with our short, low on sunlight days. The blue light has helped in the past and it seems to be helping now by increasing my day time alertness. It also seemed to be knitting the fragments of my night time sleep together a bit so that I was getting longer amounts of sleep. I noticed that I remembered more dreams and felt slightly more rested when I awoke each morning.

I had an appointment with my medical oncologist last Friday. I have not previously complained about sleep. But I did this time. She was empathetic, as usual, and suggested that I start taking gabapentin to reduce the night sweats and help me sleep at night. Preliminary data would suggest that my sleep has improved significantly since starting the medication.

Stay tuned. So far so good. Sweet dreams.

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I got a call a few minutes ago from the diagnostic imaging lab where I am scheduled to have an MRI on Thursday. Actually, where I WAS scheduled to have an MRI on Thursday. My insurance has denied the scan. My medical oncologist is appealing the denial, which will likely take some weeks to resolve. (Paying out of pocket would be $2000. Yuck.) I guess my Facebook tirade about insurance was prescient.

I am also not supposed to have an MRI within six months of having a surgery. So this means that I need to cancel my follow up appointment with my plastic surgeon to discuss next steps, if any, in my reconstruction. He told me that there’s no hurry and so it’s not a big deal except that I would have liked to put the Big Book of Surgeries away for awhile.

“Hurry up and wait” has been a large part of my breast cancer and treatment experience. And I’ve been spared this for awhile. The timing, given my overwhelming swirl of emotions is not good. I did not worry like this about my follow up mammogram last February. Then again, MRI’s in and of themselves are nerve-wracking. I’d much opt to get my breasts panini’d even in a PEM scan where each photo takes 7 minutes. (Yes, the squishy plates are in place for that long each time but gratefully not as tightly as we would all pass out. The whole thing takes about three hours. And you can’t eat any kind of sugar for 24 hours, which eliminates most foods. Okay, I change my mind. I would rather have an MRI.)

Thank you all for your kind support and encouragement. I am saving them for later.

In the meantime, I’m breathing and setting out for another walk.

Tissue expanders are very strange. They look weird and feel weird. Mine was also placed right under my skin instead of beneath my pectoralis as is usually done. That made the strangeness even more obvious. And for extra credit, my tissue expander freaked out my cat!

10/27/12: Undercover Piroshky

Or “undercover empanada.” Or “under cover calzone.” For a sweet option, “under cover apple turnover.” I opted for piroshky in the title because “under cover piroshky” reminded me of Boris and Natasha from the Bullwinkle and Friends cartoons. And Boris and Natasha were cool.

I speak of the shape of my newly expanded breast. The primary purpose of the tissue expander is to expand tissue and to encourage new skin growth. Looking like an actual breast is secondary to this goal and now that the expander is almost totally filled with saline, I realize that it looks like an upside down filled bread product. And all but the apple turnover are made with yeast so I am getting closer to a leavened breast after all. The fold part of the empanada corresponds to the top of my breast. It curves on the ends so it is not totally horizontal. The middle of the fold, however, makes a handy shelf. I could probably balance three shot glasses there. Party! If you are in more of an afternoon partying mood, I could balance a tea cup (without saucer) or for you coffee drinkers, a couple of demitasse cups.

Just thought you’d want to know about this development. You’re welcome!

11/1/12: Ravenous

My cat has hyperthyroidism and we are still trying to get it treated successfully. This gives him a large appetite and also makes him run around the house at times, in a seemingly manic state. This morning, he climbed into bed with me. He was sweet and snuggly. I gave him a lot of attention. Then he put his paw on my breast and put out his claws slightly, like he does when he wants to play. I thought, “I wonder if he could get through my nightgown, my skin, and the plastic tissue expander? I thought that he probably couldn’t but was not entirely thrilled with the idea of springing a leak in the expander. So I shifted my weight a little and remonstrated, “Kitty!”

You will not believe what he did next. He took a playful bite at my breast, not just once but twice! He’s never done that before in the 11 years he’s lived with us. I wondered why this was the first time. Maybe this is crazy, but I think when he reached out his paw, he was confused by how hard my temporary breast is. It’s a bag full of saltwater, under my skin, after all. Maybe he thought it was my elbow or something.

Now Ollie’s eating greenery from a vase of flowers on the table. Now that’s something he’s done many times before. But a fake breast? Maybe he has another illness. With humans, habitually eating items that are not food is called, “pica.” Maybe he has pica. I’d leave you on this note, but I have a funny pica story.

When I was on internship (a one year clinical position that was required to finish my Ph.D. in clinical psychology), we had a morning meeting one day to assign cases to the interns. This was a normal thing that we did every time we had clinic duty. The referral questions were written down on a phone message by the clinic secretary, along with the patient’s name and age. There was a 4 year-old coming in for an evaluation. The supervising psychologist read the secretary’s notes aloud, “Eats couch.”  I said, “I’ll take the couch eater!” No one else in the group liked preschool aged children like I do, so my preference was uncontested. Yes, it was my first and only pica case.

Chew on that.

12/1/12: I wonder if Napolean had a unilateral mastectomy?

I notice that I often unconsciously place my hand on the spot where my breast used to be. It’s sort of like a breast, at least more so than right after my mastectomy. As I’ve previously mentioned, there’s a calzone-shaped tissue expander in there right under my skin. I do it so often that I’ve begun to worry that I’ll be talking to one of my patients and suddenly find that I have put my hand under my bra without even realizing it.

I have to admit, it’s a pretty good hand warmer. Since I don’t go around topless, it’s well insulated by clothing. Plus, it’s located near the nuclear reactor part of my body, where the hot flashes seem to originate. And since the skin over the expander has no sensation, it is not unpleasant to touch it with an ice cube cold hand.

But mostly, I think my hand is just doing it’s version of, “What the Hell are you? Why are you shaped like a savory turnover? Why do you feel like a Tupperware lid?” Followed repeatedly by, “Oh my goodness, are you still there? What are doing here. Are you still shaped like a turnover? Yes, you are. Do you still feel like a Tupperware lid? Why yes, you do.”

It’s kind of like the relationship between my tongue and a crown that was put on one of my teeth about five years ago. When it was first placed, my tongue was on it constantly, like it was a foreign object that didn’t belong in my mouth. I still find that without realizing, that my tongue has a little habit of checking it out, probably at least once per day. And I think my friend, Lisa was right about my cat doing the same thing when he took a nip at my right breast some weeks back. It was his way of saying, “What the Hell is that?” My cat is about as smart as my tongue so I think this is a good hypothesis.

So now I think I’m going to do an Internet search for portraits of Napolean and see if he’s wearing a little pink ribbon in any of them.

No pink ribbon but based on the hand position, I surmise that Napolean battled sagginess in addition to Waterloo.
No pink ribbon but based on the hand position, I surmise that Napolean battled sagginess in addition to Waterloo.

Two of my surgeries, my mastectomy and TRAM, required Jackson Pratt drains. I had one for the first surgery and two for the second. As many breast cancer bloggers attest, they are an annoying inconvenience. And some people get totally grossed out by them. I am not terribly squeamish about that kind of stuff so I was okay with the idea of and care of the drain. But I was so happy to get rid of them and each time, I wrote a break up letter.

 

August 2012

Dear Surgical Drain,

By now, having sit for a few hours in the exam room waste receptacle at the True Family Women’s Cancer Center, you have realized that I’ve left you and moved on with my life. I imagine this was a shock to you as it was rather sudden on my part. To be honest, I just wasn’t that into you. I mean, I needed you for awhile for your draining function but once you’d finished the job, I was dried out and done with you. I want to wear semi-normal clothes again without having to disguise your lumpy presence with blousy tops in wild prints. Yes, you embarrassed me. Frankly, your contents were kind of gross. Don’t despair, I will need you again in a few months when I have my TRAM surgery. We can catch up on old stories. Just remember this time, that this a TEMPORARY relationship of limited scope. I am a married woman, after all. But I do thank you for coming to my aid when I needed you most.

Sincerely,

Elizabeth

(Note: I meant this post to be funny but now I am feeling ridiculously and irrationally sorry for the surgical drain. After being off work for two weeks, I have this back log of empathy and I’m applying it to plastic! No wonder my high school creative writing teacher taught us not to anthropomorphize objects. It’s not only bad writing, but it is dangerous! Don’t try this at home!)

 

March 2013

Dear Surgical Drain,

I know I broke up with you last summer after our little fling. Against my better judgment, I took you back last week when I got the TRAM surgery. Maybe I was thinking that things would be different this time. After all, there was you AND another drain. What could be spicier than co-mingling with bulbous plastic twins? However, this threesome, instead of being exciting, was just awkward and messy. Although I can’t speak from personal experience, I suspect this is oft true of other ménage à trois type situations.

But again, I do thank you for serving your purpose and keeping me from swelling up like Violet Beauregarde. (My breast cancer experience has contained far too many references to Charlie and the Chocolate Factory and Roald Dahl.)

Keep on keeping it real,

Elizabeth

You should be so glad that I screened out the grosser images of Jackson-Pratt drains, which came up in my Google images search. This one is unused and straight out of the package. You’re welcome.

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This post is from 8/7/12, the day before my right-side mastectomy. I have re-posted it previously. I include it here because it is a quite bittersweet reminder of the fears I had at the time about my physical health as well as about my view of my own physical attractiveness. My breast surgeon briefly appears in this post to show what a reassuring rock star that he is. And yes, I think I used my humor well to cope with this. This was my third surgery in six weeks. I had undergone two lumpectomies with a lack of clear (cancer free) margins. The extent of the cancer in my right breast had not yet been discovered. My treatment plan was still up in the air. (And yeah, I know I repeat that a great deal but was so incredibly stressful.)

The dress in the post? I gave it away after it became too big for me. I loved it. I felt pretty, mod, and feminine when I wore it, even during the three months after the surgery, when I wore a foam prosthetic. Plus, it was comfortable, a requirement of a middle-aged fashionista.

 

Tomorrow is the day that I say goodbye to rightie, the ta to my other ta, the oonga to my baz, and the crenshaw to my honeydew. And you don’t have to tell me that it’s sad because I already know. I do need to move forward and the sooner I have this surgery, the sooner I can get over the next round of painful and yucky stuff. My outward appearance with go from Elizabeth 1.0 to Elizabeth 2.0 to Elizabeth 3.0 by the time the holiday season comes upon us. (Just pretend that I was never a baby and I started out life as a 46 year old woman. Be creative.)

Elizabeth 1.0 did have a proper send off today. As I walked into Trader Joe’s, I received not one, but two compliments from the Trader Joe’s employee who was working out front. First he said, “Have a good time shopping” followed by, “I like your dress.” He may have even been younger than me. As an extra bonus, he was not one of the drunk guys at the bus shelter in the Junction, ergo the flirting was not the least bit creepy or boundary violating. The bus guys seem to be my main fan club. (And drunk guys, I haven’t heard a lot from you lately. Middle aged ladies need a little encouragement.) So hey, Elizabeth 1.0, you still got it and with a sober guy, too!

I am not going to be bringing my computer to the hospital tomorrow so I may not post anything until I get home on Thursday. John may have his computer and if I am mentally with-it enough I may be able to get him to post on my behalf. Otherwise, please be patient. I’m not sure what I am going to be up for communication-wise for a couple of days. I am confident that surgery will go well and even though it is likely to hurt for awhile and to be very upsetting, I will be okay. During my meeting with Dr. Beatty last Thursday I said, “I’m going to thank you now because next time I see you I may have lost perspective.” His quick and calm reply was, “No, you won’t.” He’s probably right.

Goodbye, Girl; hello, long and healthy life.

The Trader Joe’s guy has an affinity for prints, apparently. I do think I looked better in this dress for the obvious reason. My whole head showed rather than being semi-headless like this model. To have an entire head is more aesthetically pleasing. I learned that in my art history classes. I do like her earrings, though. Buy your own dress at http://www.sierratradingpost.com/chetta-b-jersey-print-dress-v-neck-short-sleeve-for-women~p~4059u/?filterString=womens-dresses~d~257%2F&colorFamily=02

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. He is now Director of the Center for the Neural Mind & Society (cnms.berkeley.edu).

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