Archives for posts with tag: coping with breast cancer

Best of Blog: Tissue Expander Trifecta

August 20, 2013 //

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.

Tags Breast Cancer, coping with breast cancer, Humor

Categories Best of Blog, Facts, Silly

Encounters

August 14, 2013 //

As you know, I walk between 3-4 miles every day. This week, I’ve had a couple of interesting encounters. The first was an encounter with a black hen that had gotten out of her yard. There are actually a number of chickens and a few roosters that live in the neighborhood. Actually, there are fowl living all over my city thanks to the Seattle City Chickens program. I enjoy the chickens, though not as much so as my husband who will change our walking route so that he can encounter the most chickens. He likes animals, in general, but also used to raise chickens when he lived in Oakland, CA. And yes, I mean Oakland, CA. He and his brother were riding the BART train into Berkeley and they saw a pet store. They loved pet stores so they eagerly walked into the doors of a REPTILE PET STORE. They immediately saw a group of baby chicks. “Why are you selling chicks in a reptile store?” The reply? “Those are boa food!”

So they emptied out all of the money from their pockets (allowance ear marked to buy comic books) and bought as many chicks as they could. Then they brought them home. “You can’t have chickens in Oakland” their mom reasonably said. Then they started crying, “But they’re going to feed them to snakes!!!!!!”

So the boys got themselves some chickens. The population quickly dwindled to one rooster, Cruiser. (There were a number of coyotes in the area.) Cruiser was quite territorial and used to sit on the roof behind the chimney, waiting for the postal carrier. When the postal carrier arrived, Cruiser would swoop down for an attack. The postal carrier promptly started delivering their mail to the neighbor’s house.

Okay, now for the second encounter. Perhaps I should give it a title.

Encounter #2: Elizabeth is not the only spy in the neighborhood!

I was out on my walk today and an older man driving a truck, stopped and rolled his window down. I thought he was going to ask me for directions. Instead he said, “You must walk about 3 miles a day.” (“Hmm,” I thought, “how does he know that.”) I replied, “Yes, how do you know that?” He said, “I live at the intersection of x and y streets. I see you by my house.” (“Hmm,” I thought, “we are not three miles from the intersection of x and y streets. You look harmless older man but I will be on the look out for black trucks in the future.”)

At this point, probably harmless but possibly creepy stalker-y man says, “Are you walking for exercise?” I reply, “Yes, I am.” He says, “That’ll make you live longer.”

I said, “Yep, hope so.”

So thank you, probably harmless older gentleman for reminding me of the reason I have walked 735 miles in the last eight months.

Tags Breast Cancer, chickens, coping with breast cancer, exercise, neighborhoods, Seattle, Seattle City Chickens

Categories Feelings

Protected: Mothers and Daughters

August 11, 2013 //

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Tags coping with breast cancer, grief, Mothers and Daughters, Parenting

Categories Feelings

Protected: Mess

August 9, 2013 //

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Tags Breast Cancer, coping with breast cancer, Family, Friends, grief, social support

Categories Feelings, Parenting

Living life without letting your ass hang out while wearing a hospital gown every 3 seconds

August 7, 2013 //

Being a breast cancer patient has tested both my physical and emotional privacy. Although I have no alternative frame of reference, being a psychologist with breast cancer has added another precarious layer of tricky boundary issues.

The physical exposure is obvious but I don’t think most people, unless they have been pregnant or have had a serious medical issue, can fully appreciate it. You’re asked to be naked all of the time or in the case of a breast cancer patient, half-naked all of the time. You get handled, prodded, squished, injected with radiation, pierced with needles and wires, sliced open, and flooded with chemical warfare. I’ve met so many O.R. nurses while climbing onto an operating table in a flimsy gown, only seeing the hazy outline of their faces because I am so near sighted without my glasses. During four surgeries, while unconscious, adhesive electrodes were placed on the front and back of my torso. A part of every first shower following surgery was finding one or two that were left behind. In addition to the bandages, drains, and incisions, this was another reminder of the way my body was cut, pasted, and manipulated while I was unconscious.

Emotionally, I have been vulnerable and scared in front of so many strangers, wonderful strangers, the healthcare providers from whom I have received my assessment and treatment. Many of them are strangers no more but there are a number of folks whom I’ve met only once. Walking in with my husband to the Swedish Cancer Institute for the first time, just my being there broadcasted the very private information that I had cancer. Before I even handed over my insurance card or gave the patient coordinator my name, she knew that I have cancer because I was at the Women’s Cancer Clinic. Everyone in the waiting room knew, too, if they happen to notice me. The second scariest thing about my life (told you, parenting is scarier), a very private matter was revealed to so many whether I wanted it to be or not.

As you know, I am child/adolescent psychologist with a private practice. At the time of my diagnosis I was booked out for three months. I didn’t know my treatment plan except that I would have at least one surgery and probably take tamoxifen. I didn’t know whether I would have radiation treatment or chemotherapy. I knew very little about the logistics of my life and how they would impact my practice.

I don’t know about you, but if I wait three months for a doctor’s appointment, I don’t really like it to be cancelled at the last minute. And I particularly wouldn’t want to reschedule for another couple of months only for it to be cancelled again. I figured that the families of my patients would feel the same and if I appeared to flake out on them, not only would the needed services be delayed, but my reputation could be harmed. I am a small business owner. A bad reputation threatens my livelihood.

After talking with my colleagues in my psychologist consulting group, I decided that I needed to tell the parents of my patients something. (As an aside, this group, along with my own psychologist, helped me continually assess whether my illness or the stress surrounding it were significantly impacting my competence, in which case I would have to transfer all or a portion of my caseload, as is required by law.) I initially decided to tell the parents that I had “a serious but treatable medical issue.” I tried this a couple of times and the acute anxiety in the faces of the parents was rather distressing to me. So I ended up telling parents that I had breast cancer, a very good prognosis, and as much detail about how it would impact my schedule as I knew. That actually worked a lot better. Fearing that some parents would under-report issues to avoid burdening me, I also told them that they had to tell me if they were not able to get from me what they needed so that I could refer them elsewhere. Since I do a lot of assessment, it meant telling people I’d not even met about my health. I wanted to them a chance to schedule with someone else if they didn’t want to take the chance that I would be unavailable. Fortunately, out of about 18 assessments, I only needed to refer one family. I was able to carry off all of the others, many of them during the month between my diagnosis and my first surgery. As a frame of reference, for the type of assessments I do, completing two per week is considered a lot and I was writing about three reports per week during that month. (I’m getting a little off topic but I am kind of amazed that I was able to pull that off.)

And sometimes the physical lack of privacy crossed into my experience with parents of patients. Guess what? Some of the parents of my patients work in hospitals, my hospital. And one of them works in one of the pre-op areas where I hung out in a flimsy hospital gown, sometimes with my ass hanging out and other times mercifully clothed in a pair of hospital pj bottoms. And that person was really nice about it, allowed me as much dignity as possible, gave me a hug before each surgery, and gave me extra pillows.

So how did I deal with having my ass hanging out, literally and figuratively? As for the physical privacy, although I am somewhat modest, I knew I had no choice and got over it. When nurses, physicians, or technicians apologized to me about the discomfort of procedures, I just said, “I know you are trying to help me. Just do what you need to do.”

In my practice, I learned to deal with inquiries about my health with appreciation and a short and positively worded reply. The only time I initiated the subject was when I had an upcoming surgery that would impact scheduling or require a long absence. When parents emailed me during my medical leaves inquiring about my health, I gave them a short and positively worded reply sometimes followed by the statement, “Now I am going to take a nap” just in case there was any question that I was not available for clinical consultation.

Although I believe that I have navigated all of this quite well, the lack of privacy has gotten me too used to not having it. I also share much of my inner life on this blog and for the most part, I navigate the privacy boundary in a way that may not be comfortable for everyone but that is comfortable for me as well as for my husband. And I have reaped so many benefits from my blog. I have met incredible people and become part of a powerfully supportive community. And I wouldn’t have them if I hadn’t written about my experience, sometimes in intimate detail. But sometimes I wonder if I disclose too much on my blog. Other times I know I disclose too much about my thoughts and feelings to friends and acquaintances. For example, I believe I have told a substantial portion of my life story to the new psychologist that joined our office a few weeks ago. She still likes me and is pretty chatty herself. But still, this is not the way I want to conduct my life, spilling my guts, every 10 minutes.

In another one of my “duh moments” I realize that I can’t keep acting as if everyone is entitled to and interested in hearing my life story, just because an incredibly scary part of my life, my breast cancer, is out in the open. The parents of my patients needed information and reassurance. I’ve told my healthcare providers, “Do what you need to do.” And that course of action worked for the most part. But I am at a different stage in this process, one that allows for more privacy than I am currently allowing myself to have.

How do I keep my boundaries in check? What is my touchstone? Although my life is more settled it is still very intense. The positives and the negatives stand out in sharp relief. What keeps me grounded while I experience a technicolor world with the bluest sky, the strongest joy, the most heartfelt gratitude, love that is surrounded by birds and flowers, and the scary cliffs of opportunity or ruin?

Your own touchstone may be different. I think mine is a question, which must first be answered before any additional questions are posed or actions are taken.

“Elizabeth, what do YOU need?”

Tags boundaries with patients, Breast Cancer, coping with breast cancer, privacy

Categories Feelings, Mindfulness

Protected: Parade Season

July 27, 2013 //

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Tags coping with breast cancer, Family, Marriage, Parenting

Categories Feelings, Parenting

How Can I Keep from Singing?

July 26, 2013 //

I’ve been thinking about a mother and her teen daughter with whom I’ve worked in my psychology practice. They had lost their husband and father ten years previously to cancer. What I remember most was the mother’s comments about their grief as a mother and daughter, that they loved their new family (she had remarried and had another child) and that they were capable of happiness. But each day they grieve for the loss of a father and husband and the grief co-exists alongside the happiness.

I feel in my own grief process regarding my breast cancer that my efforts to integrate it into the rest of my life experience is resulting in this kind of accepting co-existence. I am still working on it, but I feel close to the next place I need to be in this. And I know that I will additional opportunities to grieve my experience. (Our brain is kind and often gives us breaks in between periods of grief.) And I know that I will have other losses and challenges in my life that will test my fortitude and serenity.

But today, I am reminded of my favorite hymn. I don’t really write about my religious beliefs. And part of that is because people fight about it. I don’t need to have people fighting on my blog. Another part of it is that I really haven’t managed to hammer out all of the details of my beliefs. And suspect that I never will. That God is love and that we are here to care for one another, are my central beliefs, which I suspect will never change. And I will always love this hymn. I hope that whatever you believe that you will appreciate the message of hope, love, and resilience.

My life flows on in endless song;
Above earth’s lamentation,
I hear the sweet, tho’ far-off hymn
That hails a new creation;
Thro’ all the tumult and the strife
I hear the music ringing;
It finds an echo in my soul—
How can I keep from singing?

What tho’ my joys and comforts die?
The Lord my Saviour liveth;
What tho’ the darkness gather round?
Songs in the night he giveth.
No storm can shake my inmost calm
While to that refuge clinging;
Since Christ is Lord of Heaven and Earth,
How can I keep from singing?

I lift my eyes; the cloud grows thin;
I see the blue above it;
And day by day this pathway smooths,
Since first I learned to love it;
The peace of Christ makes fresh my heart,
A fountain ever springing;
All things are mine since I am his—
How can I keep from singing?

(The history and text for this hymn can be found here.)

(Enya recorded a lovely version of this hymn in the 90’s though I prefer to hear my mother’s and perhaps I will be able to twist her arm into singing it for my blog.)

Tags Christian Hymns, coping with breast cancer, grief, Resilience

Categories Feelings, Mindfulness

Spare Part

July 25, 2013 //

When I picked up my purse today, I discovered that I’d left a zipper open and a number of cards fell out onto the floor. One of them was my medical device identification card.

Going to the airport with a tissue expander? Don’t leave this at home.

I received this card on 9/26/12. That was the day of my tissue expander placement surgery, nearly two months after my mastectomy. Tissue expanders are usually used to stretch the pectoral muscles and skin prior to implant surgery. In my case, it was basically used as a place holder and a skin stretcher during the six months prior to my TRAM reconstruction.

I remember thinking that this card was kind of funny. The tissue expander looks like a poached egg. The “yolk” is a magnet. Tissue expanders are gradually filled with saline over a several month period. (This is one of the reasons that breast reconstruction can take such a long time, by the way.) There is a port in the expander, which it can be filled using a syringe. A “stud finder” type device is used to locate the magnet, which marks the way to the port, and tells the surgeon where to place the syringe full of saline. It’s really kind of an elegant design. A couple of magnets, a plastic bag, and syringes of saline. The magnet is metal, which poses some problems at the airport. Hence, the card. On the back, it is signed and dated by my surgeon.

The expander served it’s purpose but it was weird. A friend of a friend called it a “breast like object.” I called it an, “undercover piroshky”. It was an odd shape and since mine was right under my skin, I could feel the outline of the metal and the firmness of the plastic. When I pressed on the skin over it, it was like pressing on the seal of a Tupperware lid. It set two inches higher than my left breast, and was flat on top, creating a shelf. I often joked that if I were a party girl, I could have balanced three shot glasses on that savory pastry shaped implant.

My expander was removed on March 11th, over four months ago. There’s transplanted abdominal tissue where that plastic expander used to be. So why is this card still in my purse? You might observe that you yourself, have all kinds of cards in your purse or wallet that are no longer of use. And if you don’t clean out your wallet or purse, cards accrue because everything has a card these days. However, my obsolete medical device card fell out of my purse today AND I PLACED IT BACK IN MY PURSE KNOWING FULL WELL THAT I NO LONGER NEED IT.

I’m not sure why I still have it except that the expander was part of my experience with breast cancer. The experience is still very much a part of me. For the past several weeks, I have been working on my grief and loss regarding breast cancer. And when one grieves one loss, other losses often bubble to the forefront. It is unpleasant work I am doing. There’s a reason there are no books out there like, Ten Awesome and Fun Ways to Grieve. But it is really important to do this work in order to heal.

I think I will always have souvenirs of cancer, the scars, the permanent lack of sensation in my right breast, and the memories. I have this blog.

I don’t need a breast cancer membership card.

I know who I am, where I have been, and where I belong.

Tags breast cancer and identity, breast reconstruction, coping with breast cancer, tissue expander

Categories Feelings

Orange and I are reconciling

July 19, 2013 //

In my last post, Orange Alert, I wrote about another chapter in my complicated relationship with orange. Chapter one involved my unsuccessful attempt color my own gray roots before my mastectomy, since I had to cancel my salon appointment due to my surgery. Some how I thought that having cute hair would buffer the negative impact of losing a breast. Perhaps I was right but since my hair turned out a decidedly not cute Oompa Loompa orange, I will never know.

The second chapter involved two surgeries, the first last September (Wonky Wonka Boob) and the second (Orange River Grafting) in October. As I wrote a couple of days ago, As the orange in question was betadine, which was used as an antiseptic to prepare my skin for surgery.

I was mostly jesting about my fear of orange prior to last weekend when my husband swabbed out ground floor deck with a very orange stain. It was a trauma cue for me and hit me out of the blue.

As a psychologist I know that one of the best ways to keep a trauma cue powerful is to avoid it. (Now, sometimes there are little baby steps and skill building that need to be accomplished before facing a trauma cue head on, but this was not the case for this particular situation.) The deck continues to be orange and I look at it every day. This has helped quite a bit.

I was also thinking about betadine and yes, those orange stains on my skin happened in the course of breast cancer. And breast cancer is bad and scary. And yes, they happened during a period of time during which I was feeling particularly low.

Then I realized that one of the advantages of using an antiseptic that stained my skin is that the OR nurse knew that she had swabbed all of the areas she needed because she could see exactly what she had done.

So the orange in the betadine helped protect me from infection. My orange roots gave me a huge laugh and buffered me from some of the fear of having a breast removed. I loved writing that Willy Wonka post.

So orange, you can stay.

This is the phoenix in my garden. The artist made it out of an old pink flamingo. This is a good kind of orange, the orange of transformation.

This is the phoenix in my garden. The artist made it out of an old pink flamingo. This is a good kind of orange, the orange of rebirth and transformation.

Tags betadine, cognitive behavior therapy, coping with breast cancer, irrational fears, trauma, trauma cues

Categories Facts, Feelings

Orange Alert

July 17, 2013 //

My husband built a deck off of the second story of our house. To say that it is beautiful is an understatement.

July is the driest month of the year so he waited to stain it until now. We also have a large wooden patio off of the ground floor, which is in need of refinishing. John got some stain samples, which he carefully applied to samples of all three types of lumber he used to construct the upper deck. We chose the stain color together.

He started staining last weekend. He ran out of stain on Sunday. The kind he purchased was not available at any of the stores that are open on Sunday. Additionally, this stain is quite expensive. He decided, after consulting with me, that he would buy a similar color, more economical stain for the lower deck. However, this time, he did not test the stain on wood samples. John just started staining away.

By the time I looked at it, here’s what I saw.

When John asked for my input on the deck color I said, “No orange.” There it was, a sea of orange. And I felt irrationally anxious and angry, not so much with my husband but with the color.

I may have asked John to sand off the finish.

I may have even characterized it as “looking like ass.”

I may have said, “Maybe I can learn to live with it but it looks like BREAST CANCER!”

I have had a couple of run ins with Oompa Loompa orange during my time as a breast cancer patient. I tried to make light of it and I actually enjoyed writing posts like Wonky Wonka Boob. During the initial placement of the tissue expander, betadine was used to prep my skin for surgery. I also had trouble with some tissue necrosis after that surgery. Since the betadine was not removed during surgery, I was left with a Oompa Loompa orange “breast”, complete with tissue necrosis. When I had a skin graft the following month to correct the necrosis, I was awake. I saw the nurse put betadine on my skin as she was prepping me for the surgery.

And guess what? Betadine is a liquid, just like deck stain. And it stains the skin just like deck stain puts color on wood.

What’s the big deal about having orange skin, Elizabeth? You’ve had a wire in your nipple, been injected with radiation multiple times, had each boob squished for 7 minutes at a time for a PEM, and had a mastectomy that made your chest wall look like Craters of the Moon.

The difference is that my first two plastic surgeries took place at a time when I was mentally and physically exhausted. I was working too many hours upon my return to work following my mastectomy. It was hard to know how much work I would be able to handle and I guessed too high. And even trickier is predicting the times when the strong emotional consequences of dealing with breast cancer will come crashing down. And in the fall of 2012, there was about six weeks when theo accumulated stress and grief that came crashing down over me.

So orange has become associated with a really low scary time of cancer. Some might even say that it is a trauma cue for me. Stress can cause trauma but not all stress is traumatic. And not all people who’ve been traumatized developed Post Traumatic Stress Disorder (PTSD; I mention this just for clarification because I don’t think I have PTSD).

I knew I was stressed. I knew that I was experiencing grief. But trauma, that was news to me, until I went off on that orange deck.

I’ve got a lot more emotional work left to do on breast cancer. I’m going to keep digging. Fortunately, I have a big and strong shovel.

Tags breast cancer and stress, breast cancer and trauma, coping with breast cancer, trauma cues

Categories Feelings, Mindfulness