Archives for posts with tag: Breast Cancer

I recently came across a scrapbook my husband made for me to commemorate my 40th birthday. In it friends and family, old and new shared memories of their relationship with me. I came across an entry by a friend from graduate school, Beth. She and I were both married to men named “John” who were graduate students in the Computer Science Department. It was a funny coincidence. We socialized a little as married couples and I have always thought very highly of her as a gentle, thoughtful, and intelligent person. We exchange Christmas cards each year and an email every ten years. I had forgotten what she had written in my book or even that she’d taken the time to respond to John’s request. What she said was lovely that she sees me as a kindred spirit with whom she will always have a connection. She described me as “fun, smart, and safe.”

When I was a psychology intern, I trained at a medical center in which our services were integrated with the medical services. We worked with cancer patients, burn patients, spinal cord injury patients, organ transplant patients, etc. We also had a separate outpatient psychology clinic and provided testing services to the department of psychiatry.

In my work, I don’t typically work with people who are in imminent danger. I remember the trepidation I felt prior to this internship that I would have nothing to offer individuals with serious medical illnesses, especially those with terminal disease. And I really really really didn’t want to work with children with cancer and other serious life threatening illnesses. But I did.

I discovered that I had something to offer them. Even as children, they understood the danger of talking about their illness with their parents. They understood the burden. As an outsider, I could lift it. They could talk to me without fearing that they were hurting me in some way. If I empathized with the sadness, anger, and fear, I was just a supportive adult not a parent who is supposed to be the strongest person in a child’s life. And I could listen and avoid the unintentionally non-accepting messages that adults give children when they try to talk kids out of emotions because they are unable to regulate their own. Children, even children who are dying, like to play and laugh. I could do those things. I could be fun, smart, and safe.

I keenly appreciate the fun, smart, and safe people in my life right now. And many of them come from unexpected places. I left for vacation right as Diane from dglassme posted the very excellent Deep Dark Trenches of Virtual Space. Diane writes about her own link to the Internet, especially the cancer blogging community. The post is also accompanied by a photo of sharks. I identified with the post so strongly, especially the following:

When you start to look forward to seeing your doctors more than your friends, you know something has gone dreadfully wrong considering they have some pretty ridiculous personalities, or when you care more about what a complete stranger you met on the internet has to say than a close friend or loved one. Who are these people? They are mothers, psychologist, college students, diplomats, attorneys, historians, writers, nurses, surgeons, oncologist, etc.  – people from all walks of life, from all over the world – who have cancer or are working with people who have it.

During this technicolor stage of my life, especially the part of my cancer recovery during which many people in my life consider cancer to be in my permanent past, I find myself drawn to my cyber buddies. Most of them are cancer patients but others are not. But the thread that binds them is that due to personal circumstances and/or chosen professions, they are accustomed to life changing events. They deal with challenges with intelligence, kindness, and humor.

I have developed a few unique and close friendships with individuals whom I have never met in person or even spoken to on the phone. I have no frame of reference for these particular kinds of relationships. I had never blogged prior to my cancer diagnosis. My Facebook use in the past, basically boiled down to “Look at my kid!” “Look at my kid again!” (I still do plenty of proud mama posts. And by the way, “Look at my kid!”)

Sometimes I feel ill at ease with the uniqueness of the relationships. I feel at a loss as to how to explain to others how I learn so much from “strangers”. Fortunately, my husband gets it and never seems to feel left out or disappointed that I look outside of our marriage for support. Sometimes I have trouble navigating the waters of my cyber friendships, but by and large, I still feel safe. In this community, I feel that there is always someone who can sit beside me and hold my hand during the lowest points. And there will be someone who will laugh at my jokes even if they are dark. And there will be someone who communicates an understanding of what I am going through even if his/her experience is different. And since it is a community, there is always someone who can step in for support when someone else is not available. So the network is consistent and always there.

I am thankful for the times that my technicolor emotional expressions are not only tolerated but accepted because there have been a few times that I am been taken aback by the intensity and intimacy of my outpourings. I boo-hoo-hoo’d with dysregulated empathy over one of my friend’s Facebook posts, when she was having a particularly difficult day. I was embarrassed afterwards and even thought about apologizing. But knowing that apologizing for these kind of behaviors can be a kind of unnecessary flailing dance that I do, I held back. In time, normalcy returned on its own.

I have dear friends and family who help me heal and grow stronger each day. They love me and want the very best for me just like the parents of the children with whom I worked at the hospital.

But as Diane pointed out, the people, even the dearest ones in our day to day lives, don’t constantly live with cancer or some other life changing experience. When I talk to them about my fears or my illness, I know that I may tip them off of their axes and send them spinning in other directions. I have been in their shoes before and I totally get it.

Thank you for being fun. Laughter helps me deal with the ridiculous aspects of my life, it distracts me from my worry, and it gets me breathing again.

Thank you for being smart. I feel understood and connected rather than lonely and weird.

Thank you for being safe. Thank you for sitting with me in my grief and trusting me to work through it. Thank you for forgiving the times I step on toes, don’t pay enough attention, or misplace my tact.

I hope that I provide the same things for you. Cancer is scary enough without scaring each other.

This content is password-protected. To view it, please enter the password below.

This post is from 4/11/13. It’s perhaps one of the silliest things I’ve ever written. But I like silly so that’s okay. Silly has gotten me far in life. A hidden meaning of this post is my great love for my husband. Soylent Green is a film that I would NEVER have seen if I had not married a man who adores cheesy low budget cinema and begged me to watch it with him. (He had already seen it but he wanted me to see it.) Actually, watching a movie was one of our first dates. He asked me if I wanted to join he and his roommate in watching Terror in the Aisles, a compilation of scenes from horror films. I HATE HORROR FILMS. I MEAN I REALLY HATE THEM BECAUSE THEY TERRIFY ME! But I had already fallen in love with John, which was not yet reciprocated. This was my chance to impress. I would gut my way through it. We got to the scene where Cujo’s face exploded and I started screaming, “Turn it off, turn it off, turn it off!!!!!!!!!!” Not our best date but he never tried to get me to watch horror again. But he did get me to see Soylent Green.

 

I finally got around to making the very healthy chia pudding recipe I posted from my dear friend, Mike, who practices Chinese medicine in New York City. Helen of My Lymph Node Transplant had made it a few days earlier and kindly noted that it was a bit on the bland side, so she had added extra dates to it. At that point Helen declared it, “very nice”. So I doubled the dates. I also ended up roasting my raw cashews after my husband reminded me that he is allergic to raw nuts. I also substituted olive oil for coconut oil. I couldn’t find the latter and I suspect my daughter has absconded with it to use as wax for some project she is doing in her room, perhaps making a surf board out of a tree branch or something. (I exaggerate her mad scientist shenanigans only slightly. Only this morning, I found a seafood fork in the shower.)

After I blended the pudding in the my food processor, I gave it a sniff. It had a pleasant, nutty aroma. The appearance is a nutty tan color. I did not think it looked bad. However, my husband, who will eat ANYTHING, wouldn’t even try a bite. I ate a little spoonful and it tasted good and the texture was similar to tapioca pudding, just as Mike had described in his introduction to the recipe. Wait, a minute. I just remembered something. I don’t like tapioca pudding because of the texture. Actually, I find the texture to be somewhat disgusting. Did I think the fact that this pudding has healthy ingredients was going to change this for me? Aaaah! I have become my grandmother. Unlike the stereotypical expectations of a first generation Italian immigrant, my nonna was a pretty lousy cook. I remember how incredulous she was when her soups didn’t turn out tasty. She would say, “But I put a whole stick of good butter in it and a wedge of good cheese.” She thought the quality of the ingredient trumped all. And grandma, why did you put all of that butter in the soup. Yuck! (My mother has read this post and believes I may have confused her mother with Paula Deen, the famous butter loving chef.)

So, I took all of this time and energy, not to mention the expense of the very healthy ingredients and ended up with Soylent Green! You don’t know what soylent green is? It’s the “plankton based” food that people had to eat in the dystopian future sci-fi movie of 1973 starring Charlton Heston. You see the world had ruined the environment and was running out of food. Charlton played a rugged and “sexy” cop whose wardrobe looked like a mash-up of Oliver Twist and Mork of Mork and Mindy. The masses in this society had to eat processed “plankton” crackers. But as Charlton learns by the end of the movie, there’s no plankton. “Soylent Green, it’s people, it’s people!”

Okay, so my initial batch of chia pudding reminded me of a film about cannibal crackers. That is not a good start. But I had put this much time into it and put lots of good ingredients in. So, like Katie Torlai before me, I started combining it with stuff. I added a couple of tablespoons of pudding to 2 tablespoons plain Greek yogurt, 2 tablespoons flax seed meal, and 3/4 of a peeled apple, sliced into small chunks. This concoction was to be my breakfast, which I have adopted as my “medicinal meal”, that is the way I get 2 tablespoons of flax seed meal into my diet each day. Consequently, my expectations for breakfast are low.

As I mixed up my small vat of chunky, seedy, goo, the appearance points for the dish dropped from 1/4 of a star to zero stars. It looked really unappealing. I took a taste, fully expecting to exclaim, “Soylent Green, it’s chia, it’s chunky, yogurty, seedy chia!”

To my surprise, the added ingredients actually improved the dish’s texture score from 0 stars to 1 star. It no longer reminded me of the goo from badly cooked okra. The flavor rating was bumped up to 1 1/2 stars.

Ding, ding, ding! Marginally palatable breakfast is served!

Photo from Wikipedia

I just offered Charlton a spoonful of pudding. Coward!!!!
Photo from Wikipedia

P.S. I almost forgot that it is Health Activist Writers’ Challenge month. Today, my health activist sign reads as follows:

You are what you eat, especially if you live in a dystopian future complete with Soylent Green as the only food option.

This post is from 4/6/13. I had been home for nearly a month following my TRAM surgery. I was bored.  I was trying to do a daily post following the Health Activist Writers’ Month Challenge. I decided to do it before I read the writing prompts. I didn’t like them. But I appreciated the purpose of the challenge and tried to give include some kind of health related message in each post.

 

For today’s Health Activist Writers’ challenge post, I have a challenge for YOU.

I challenge you to join the WRF, the World Resting Federation. Yes, you read right, the World Resting Federation. Yeah, we get confused with another world federation. We have a similar name plus we also wear really cool costumes and have cool names. My resting name is Googly Eyes. We also engage in bouts to see who is the hardest rester. I am able to use the mesmerizing power of my cattywampus bosoms to render my opponents wide-eyed while I catch some major zz’s.

Are you ready to rest with the best?

Come see my next match.

It’s on Sunday, Sunday, Sunday!

Limited edition commemorative pj’s will be on sale.

smiley t shirt small

This post is from 1/31/13. Now that I’ve complained about my kin’s untidy habits, I’m putting up a repeat of post in which I complain about Hubby’s subclinical hypochrondria. Girly has it, too. Interestingly, it has improved for both of them over the last six months. Hmm…

Yesterday, my hubby complained of being hot and not feeling well. I thought that perhaps he had caught menopause from me and was having hot flashes. Given that I contracted menopause from a hypodermic needle (full of Lupron), it makes sense if you think about it. Today, he feels much better.

As a former university researcher, I conclude that menopause in males is a 24 hour condition. I think I will write a paper on this and submit it to the Journal of Polymorphous Perversity. (See an example of one of their premier articles, Oral Sadism and the Vegetarian Personality.)

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.

This content is password-protected. To view it, please enter the password below.

This post is from January 2013.

I’ve been struggling with water, the gift of life, aqua, good ol’ H2O.

There was leaky pipe in my office last Saturday, which would have created a deluge had my office mate not been there to see it so a plumber could be called to fix it.

Yesterday, as usual, I went for my three mile long walk. It was rainy, which is not unusual for this time of year. I donned my Gore-Tex armor, which has served me so well-Gore-Tex hat, Gore-Tex hiking boots, Gore-Tex parka, Gore-Tex boots, Gore-Tex pants.

If I lived a considerable distance south of these parts, I might even call myself a Gore-Texan. (Cue music.) The rain at night, lasts a fortnight (clap, clap, clap, clap). Deep in the heart of Gore-Tex!

I came home from my walk, my boots squeaky, my socks soggy, and soaked through my coat, insulated long-underwear shirt, t-shirt, and bra! Only my Gore-Tex pants managed to maintain my faith in the magical rain shedding powers of Gore-Tex.

I took my smartphone out of my ZIPPPED Gore-Tex parka pocket. Uh-oh. It was covered in water. The screen was flickering! I quickly turned it off and opened it up. It was wet on the inside! I dried it off but being fool hardy, I tried to turn it back on even though my brain was telling me, “Leave it off and call AT&T.” It turned on but was frozen on the “Samsung” boot up screen. So I turned it off and broke it down again.

“My precious! My precious phone! My extremely complicated work, medical, family, personal life calendar is on there! The names of all of the new patients I will see between now and March 5th are on there!”

“Golem, I feel your pain,” I thought to myself. “I am a psychologist. I am not addicted to technology. I am an excellent problem-solver. Get a hold of yourself, woman!” I took a deep breath and called AT&T.

A very sweet technical support rep named Shannon answered. “Oh, I just did that. I was so worried. I keep EVERYTHING on my phone. Surround your phone with rice to get it to dry out. Leave it for at least a day. I’ll call you tomorrow and see how you are.”

Shannon has felt Golem’s pain as well. I confirmed with her that if the phone didn’t dry out, it was curtains for the information on my phone. (And yes, Google is supposed to automatically back up my calendar but that stopped working and I’ve been procrastinating about figuring out a fix for that problem.)

“My precious! My precious! God, you can take my breast but not my SMARTPHONE!” I was again, I’m afraid, losing some perspective. So I then imagined the Albert Ellis section of classic 1960’s psychologist training film, “Three Approaches to Psychotherapy“, also known as “The Gloria Films”. Gloria, a real person with real life problems, agrees to be taped seeing three super famous clinical psychologists (Fritz Perls, Carl Rogers, and Albert Ellis), one at a time. Pioneers in fields can be kind of extreme. The Gloria films illustrate this quite nicely. By the time I saw the film in the 90’s, it was for historical purposes. The film served up unintentional hilarity with a side of guilt since Gloria was a real person with real problems. They were not getting addressed.

So what does this have to do with my meltdown about “My precious”, you may ask? Albert Ellis was a brilliant psychologist who developed Rational Emotive Therapy (RET), which is the foundation of modern cognitive therapy. The goal of RET is to use reason to reduce psychopathology. However, Ellis did this in the absence of stuff like, you know, demonstrating empathy and establishing rapport. He also had a rather distinctive nasal northeast accent. Combined with his lawyerly therapy style, it was pretty funny. “I can see that your situation in inconvenient, but it is not terrible and awful.” Or my favorite when Gloria puts her self down and he responds by telling her that if she makes a mistake it does not make her a “no good-nik”. The sight and sound of Dr. Ellis trying to use 60’s-era hip slang was double hilarious. Check it out for yourself here.

“Elizabeth, your anecdotes require too much exposition! What does this have to do with your phone?”

Thank you, patient readers. Basically, I tried to reason with myself as I often do, but this time I remembered Albert Ellis, and it made me laugh.

That pulled me out of my tizzy and I went about recreating my schedule, piecing it together from memory, emails, and other non smartphone dependent methods.

Today, I took my phone out of it’s rice bed and it awoke!

Thank you, Albert Ellis. Yesterday was inconvenient and more than a little stressful but it wasn’t “terrible and awful.” I hope you forgive me for laughing at you and for being able to do a dead-on impersonation of you. You were definitely not a “no good-nik.”

This content is password-protected. To view it, please enter the password below.

Lindbergh High School Reunion '82, '83, '84, '85

Join us this summer for our reunion in Renton, WA!

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. His newest book "The Neural Mind" is now available.

KomenWatch

Keeping our eyes and ears open.....

4 Times and Counting

Confessions Of A 4 Time Breast Cancer Survivor

Nancy's Point

A blog about breast cancer, loss, and survivorship

After 20 Years

Exploring progress in cancer research from the patient perspective

My Eyes Are Up Here

My life is not just about my chest, despite rumblings to the contrary.

Dglassme's Blog

Wouldn't Wish This On My Worst Enemy

SeasonedSistah

Today is Better Than Yesterday

The Pink Underbelly

A day in the life of a sassy Texas girl dealing with breast cancer and its messy aftermath

The Asymmetry of Matter

Qui vivra verra.

Fab 4th and 5th Grade

Teaching readers, writers, and thinkers

Journeying Beyond Breast Cancer

making sense of the breast cancer experience together

Entering a World of Pink

a male breast cancer blog

Luminous Blue

a mother's and daughter's journey with transformation, cancer, death and love

Fierce is the New Pink

Run to the Bear!

The Sarcastic Boob

Determined to Manage Breast Cancer with the Same Level of Sarcasm with which I Manage Everything Else

FEC-THis

Life after a tango with death & its best friend cancer