Protected: Independence Day
Protected: One in joy, one in sorrow
Protected: Scarier than Cancer
Protected: Parade Season
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.)
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.
My dear friend, Rachel, just posted a comment on Facebook, “I think I’m about to get in trouble on a friend’s page. Best shut my yap.” My response was the following comment: “Do a cost/benefit analysis and then proceed accordingly. I saw my comment in print and thought, “And to think I used to write poetry.”
But when it comes to sticking our necks out and debating, it is probably pretty good advice. As I have described elsewhere, I am naturally argumentative and love a good debate. You may recall from an earlier post that my fellow grad school mate, Penny once described me in her amazingly wonderful Appalachian drawl, “Elizabeth would argue with a post.”
Some of those arguments were transformative and some were just fun. At other times, they were draining, left me in a lingering state of emotional turmoil either because I felt hurt and/or that I felt that I had hurt someone else. I am not a mean person but I am a quick thinker and when hurt or angry, I can use my verbal ability in a very aggressive way. This was particularly true in my teens. One of my high school teachers wrote in my senior year book, “I will miss your acid tongue.” I don’t think he missed it because he ignored my Facebook friend request when I put it out there a couple of years ago. And I could see that he was active on Facebook and friends with other students.
An excellent lesson I learned during the horrible work situation that led to my first of two major depressive episodes was to trust myself and choose my battles carefully. I spent nearly three years at that workplace, surrounded by some amazingly competent and dedicated people and others, well not so much. And since the folks in the “not so much” category were in management, even us amazingly competent and dedicated underlings misbehaved. I spent a lot of time in conflict with managers and coworkers because I felt both personally and professionally attacked and unable to do my job. I was given two managers, with totally different training, and totally different goals. In other words, it was a structural set up for failure. Before I fully realized how futile my situation was I spent a lot of time questioning in my head, “Is it me or is it them?”
Sometimes arguing for me is an intellectual exercise or sport. At other times, it has been a way of seeking reassurance when I am anxious. I did a lot of that kind of arguing at that place of employment. The illogic and chaos of the place was so disorienting. If only I could explain my ideas logically or counter criticisms in a reasonable manner, the universe would become organized again.
The universe didn’t reorganize itself until after I was laid off from the job in a very nasty way. But it was freeing. I got my depression treated. I got my Washington state psychology license and planned to start a small private practice in case my research career, the one I had fought to achieve and maintain over the span of 20 years, wasn’t viable. I wrote a small grant with a software company that designs web-based training, using a rather ingenious curriculum design developed by a professor at mid-west university. The grant was from the U.S. Department of Education to develop a pilot educational program. This was truly exciting as I had been working in computer-based parent education program research and development since my doctoral dissertation. Telehealth was a new, growing, and much needed research area. I live in a metropolitan area but I spent my training years, six years in North Carolina, one year in northern Florida, and two years in southern Indiana, working with rural families with very little access to even the most basic parent education on how to help little kids learn to cope with the difficulties in life in ways other than hitting, kicking, or throwing tantrums.
For my doctoral dissertation, I had carried out an independent project (as opposed to working on a professor’s project) a clinical trial evaluating a parent education program that I developed along with my husband, who is a software engineer. The results of the trial were modest, but positive and statistically significant. Working with an established professor translating parent education to his web-based instructional design meant continuing a line of research using technology as an additional mental health service delivery method.
You know I love writing about context. This is why I am not making a long story short. If you have not yet gotten my message, I was REALLY invested in my line of research. Getting help to under served populations. Preventing the really treatment resistant mental health problems that can develop in folks who don’t get early intervention, many of whom end up being “treated” in our penal system. This may sound overly self-important or idealism bordering on delusion, but I really viewed it as a vocational calling of sorts.
Back to the grant. We spent the $50,000 the government provided very very well. The pilot project was a success and something of which I will always be extremely proud. The parents who used the program loved it and they also provided me with very positive feedback regarding the email-based discussion thread moderation and coaching I provided to them as they completed our little program.
Although I enjoyed working with my co-principal investigator, the Big Time University Professor, I was extremely unhappy with a key staff member at the company, with whom I interacted daily. I think it basically boiled down to his taking a different role on the project than the one that he had been accustomed to, which was being in charge functionally if not officially. In other words, management had been very hands off. He really did not like this and fought me over everything including the program content and learning objectives.
I also disliked managing a project being carried out in the Midwest while I lived in on the west coast. It was time to write the “big grant” the one that was the follow up for the pilot grant (the granting mechanism was defined as a two-stage grant, the little grant followed by the big grant.) If the government were to funded the second grant, it would have been a $250,000 grant, which is not enormous in the research world but it is significant and a huge amount for a researcher at my career level.
I knew people in Seattle with relevant production and project management experience. REALLY GOOD PEOPLE WITH WHOM I’D WORKED WELL IN THE PAST. I’d contacted nationally known researchers, primarily psychologist and they had agreed to serve as consultants on the grant with no financial compensation. (That is standard, by the way. Psychology professors do a lot of stuff for free.) The pool of possible Internet programmers in Seattle was huge compared to a small university town in the Midwest. The professor and I set up a meeting with the company C.E.O. I wanted to request that I hire a Seattle crew to carry out the project, should the grant be funded. Big Time University Professor thought this was a grand idea, in fact I think he was even the one who suggested it.
C.E.O.’s response was a surprisingly loud and angry, “You work with the team you’ve got or we part ways.” I REALLY wanted to write that grant. But I was clear about what I was and was not willing to put myself through in order to get that chance. He had made a bold and seemingly bullying move. I calmly replied, “If the only choices are to keep this team or to part ways, then we will part ways. But I think there are other solutions to this problem. Let’s discuss those.”
I didn’t argue but I stood my ground. The small grant was over. I was back to collecting unemployment. My family needed for me to make an income. It wasn’t just about my idealistic goals or my career. It was about putting food on the table. The meeting ended on an ambiguous note something along the lines of “Let’s keep talking about this.”
My gut told me to get out and that what looked like a wonderful possibility would not be in reality. The C.E.O. was not a bad guy but he was disrespectful and I had no confidence in his ability to treat me like someone with something of value to offer the company. They were also struggling financially, had been through a number of rounds of lay-offs, and a few years later, the company folded. So he was also trying to protect existing staff rather than to expand the company into Seattle.
My husband agreed with me and I declined to write the grant. It was disappointing but felt like the exactly right decision. I ended up getting on research staff at the University of Washington and starting my psychology practice. I ended up loving both jobs, the former as long as it lasted, which was three years.
These days, I keep my arguments with posts (figurative or literal Facebook posts) to a minimum. I try to think about the costs of acting as well as the costs of not acting. I think about what things I will not get to do if I am busy arguing. I think about the fairness and strength of my argument. I consider the other side. I consider other solutions to the problem. I think about whether I am trying to solve the right problem.
Conflict is a fact of life. Some conflict is even necessary for life, especially if one has relationships with at least one other human being. But conflict as a way of life? No, thank you. I’ve got too many other things I want to do with myself.
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 rebirth and transformation.
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.
My Eyes Are Up Here 