Suspended

small shipI feel broken. I don’t know why this latest diagnosis has given me such a hard kick in the head, but it did. I already have metastatic breast cancer and I will die from it. What does another tumor matter at this point? My GP thinks it’s a new primary, but he didn’t sound very sure of himself when he said so. He is a very good family physician, but at this point I know more about breast cancer than he does. I’m waiting to hear from him about the expedited oncology consult, where I should be able to have my questions answered.

But for now I just feel broken. Nauseated. Devoid of energy. I walked on the treadmill for a few minutes and I’ll do that again in a little while. When it cools off outside I’ll go out and sit on the swing. My feelings are not the boss of me.

I feel suspended in a viscous solution. There used to be a commercial on American television for a shampoo. It showed a pearl dropping slowly into the bottle, and not sinking quickly to the bottom. I think it was supposed to give an impression of how thick and luxuriant your hair would feel if you used their product. I feel like the pearl: not floating, not sinking.

It doesn’t feel luxurious and it doesn’t feel safe. When I was a student my group dynamics class went out on a yacht for a weekend group marathon experience that would take place entirely at sea on the other side of Catalina Island. (California, the 1970s. It wasn’t strange for that time and place.) At one point we were all sitting around and the waves were kind of strong. “Close your eyes. Feel yourself being rocked,” the professor said. But I misheard and imagined myself being dropped. It was very unpleasant imagining myself dropping, dropping and not reaching bottom. I feel like that today.

Today or tomorrow I’ll probably hear from my GP with word about the oncology appointment. It will probably mean going back to the woman I fired. I’d rather not see her, but I don’t want to wait for the time it would take to be seen as a new patient by someone else. So I’ll go back to her and follow her lead. If she wants an apology, I’ll apologize. That doesn’t cost anything. At the same time, I’ll have my talking points and questions written out and I will not allow her to deter me from them. I’ll listen to her politely and I’ll insist that she return the favor.

My operational goal for that meeting is to get all the information on this tumor and referrals for all the scans and bloodwork. Depending on how it goes, I may ask her for a referral to a colleague. If we can be polite and respectful with each other, I may not. My personal goal for the meeting is to stay on an even keel emotionally, to be pleasant and professional, to get what I need and not to allow her to belittle me. Eleanor Roosevelt will be my guide: “No one can make you feel inferior without your consent.”

I feel broken this evening, but that is just a feeling and feelings are not the boss of me. I can sit with that feeling for a time without changing who I am. In a little while I can walk on the treadmill some more and after that maybe take a glass of lemonade out in the courtyard. I can take care of myself without being “disloyal” to my feelings. I can feel my feelings without doing violence to myself. I am the captain of my ship; I am the captain of my soul.

 


Image copyright: Oleg Nesinov

15 Random Things

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I can’t stand talking about cancer at the moment. Still no report from the “alien baby” biopsy. Still no respite from the pain. So no cancer talk from me today. Instead, a day (week? fortnight?) late and a dollar (pound? euro?) short, here are 15 random things about me that some people know and others don’t.

Thing 1Here’s the loosely held secret that pretty much the whole world knows, made official. I’m a Catholic nun. I used to be in an enclosed monastery where we spent at least eight hours of the day praying and around eight hours in manual or intellectual work. It was a very good life for me, but I longed for more solitude and more time for non-liturgical prayer, which leads us to…

imagesI am what is called an “urban hermit”. These days, not all hermits live in mountain cabins or desert caves. Some are peripatetic, living on the road with no possessions and seeking to glorify their Creator with their lives and in the lives of those they meet. Others live in cities. For the Catholic scholars among us, the new Code of Canon Law in 1983 defines the hermit as someone who desires to “devote their life to the praise of God and the salvation of the world through a stricter withdrawal from the world, the silence of solitude, and assiduous prayer and penance.” (Canon 603)The mode is between the hermit and God with the help of their spiritual companions and superiors. (1)

il_570xN.320861252I am a hopeless pedant. If you didn’t know that before, you certainly do after reading Thing Two.

 

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I like babies. Human babies, furry babies, scaly babies. Pretty much any babies. Baby pandas. Baby gorillas. Baby seahorses. Baby elephants. Baby turtles. Whatever. Babies turn me into a babbling pile of goo.

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5. I get bored easily. (That’s why I’m not doing any more “thing” images.)

6. I love language and languages. I love grammar and punctuation. I once got into  a major argument with a friend who was editing an anthology of short stories that included one of mine. The argument went on for a few days and several phone calls. It left us frosty and it took time for us to get back on our old footing. The argument was about a Very Important Comma she wanted to remove from my story.

7. I was once bit by a baby donkey whose name was Salaam. He hadn’t grown into his name yet.

8. I once had a car that was such an unholy wreck that I had to make it new steering linkage out of wire coat hangers and when the gears got stuck I had to get underneath and bang on the linkage with a hammer.

9. I don’t like swimming, especially not getting my face wet.

10. And I cannot abide the taste of licorice. Blech!

11. I forgot to add in Number 6 that I have a theory that prepositions shape our worldview in very deep ways.

12. I believe that the best way to bring about peace and dialogue is by people from different groups working together for a common goal or playing together in a common joy. I don’t care for formal “dialogue” initiatives.

13. Someone needs to invent a cure for cancer that involves eating large quantities of pizza, pasta and meat and drinking good strong coffee and adding ice cream as required for desired results.

14. I used to sing and play folk music and blues and I have performed in some very strange venues, including singing for pizza and beer in a neighborhood tavern.

15. I really love people. This is my greatest joy and my biggest sorrow.

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P.S. The “15 Things” image in this post comes from a post called “15 Things Dermatologists Think Hospitalists Need to Know”. I guess that’s my bonus Thing 16: I believe in giving credit wherever I can.


(1)Can. 603 — § 1. Praeter vitae consecratae instituta, Ecclesia agnoscit vitam eremiticam seu anachoreticam, qua christifideles arctiore a mundo secessu, solitudinis silentio, assidua prece et paenitentia, suam in laudem Dei et mundi salutem vitam devovent. (Or ask Auntie Wiki.)

Using It, Still Losing It

23843263_sSo here’s the background. When home computers first became available, I was smitten. (Yes, children, there was time when personal computing was but a glint in Knot’s beady little eye.) Wow! I could do amazing things, I could write a program in BASIC to balance my checkbook!

A few years later I was in a fellow grad student’s lab in the biology department of the university in Los Angeles, and he showed me how he had this new thing on his computer where he could exchange data with a computer in Washington D.C.! And he had a stylus that he moved around on a special flat surface and he showed me how to used it. I could move the computer cursor with a magic wand!

Another few years and I was working in a high-tech company started by a couple of physicists that developed and produced collimators. They had an astonishing program on one of the engineer’s computers that could send telexes without the telex machine! I was the only non-engineer allowed to use it.

I was paddling around in a sea of tech-ish delight. I never took courses, but I learned on my own and by watching people who knew what they were doing. In the 1990s and 2000s I was very competent with both hardware and software. My hobby brought me to the little niche of providing computer advice to nuns around the country, sometimes visiting their convents to set up networks and solve their connectivity issues. I even wrote a database management app in MS Access that handled the medical, psycho-social and educational records of the children in a residential facility for severely brain-damaged children that is still in use today.

In short, I spent the first four decades or so of personal computing developing “mad skillz” in everything informatic. But, as Bobby and Shirley Womack wrote and the Rolling Stones and others sang, “It’s all over now.” (The image breaks down quickly unless you consider informatics my cheating girlfriend, but never mind.)

Yesterday I decided to start in on digitalizing my household records of the past seven years. I got one of my helpers to work with me on the project. The idea was to scan everything into searchable files and save them on my hard drive with backups everywhere on God’s green earth and above it (I’m not a fool), then shred the paper. Save space in the house, be able to produce old documents on demand, making it easier for me now and for whoever needs to sort out my affairs when I die. Not a big deal, right? Easy peasy, right?

Not exactly. I forgot how my home scanner settings work. I forgot how to scan to a pdf instead of a jpg or bmp. I forgot how to make new sub-directories. I forgot the quick way to rename a file. I got confused in the middle and forgot what we were doing. I was a touch past the brink of tears. My helper became frustrated with me and started bossily telling me how to do things her way.

I saw my not-too-distant future and I was deeply saddened alongside my intense frustration. This was undeniable evidence of my slowly increasing cognitive impairment. (Like just now, for example, when I couldn’t remember the phrase “cognitive impairment” and had to google around a bit, trying lots of different words until I found it.)

My neurologist and GP don’t believe me. (I am getting really tired of singing that song, but it’s not the subject of this post.) The MMST* administered by my neurologist didn’t really show anything, but acing the MMST doesn’t require very high functioning. The fact that I had to stop my work as a translator after having achieved a certain status in my niche field doesn’t seem to count. The frustration that brings me to tears is not significant to them.

A few people, including one of my doctors, have told me that if your pre-impairment baseline was higher than average then your impairment is an average person’s usual functioning. They intend for that to comfort me. It does not.

I am trying to reframe what is happening to me as an opportunity to cast off my intellect-dependent self-image and identity and turn to other qualities to define myself: emotions, empathy, perseverance, endurance, generosity, kindness, and so on. So far, it’s not working.



* The Mini Mental Status Test.
Image copyright:  Andrea Danti

Cancer Gratitudes

Cancer Gratitudes

A few of my thoughts

You know how we say that something resonates with us? The word literally means that it reverberates, creates an echo in us. That is how I felt when the moment I saw this absolutely spot-on cartoon by Teva Harrison. I felt that it was ping-ponging around inside me, ricocheting with support and understanding. When someone expresses my feelings so exactly, it creates a moment of intense communion. I feel as though our souls meet, touch, move on. I am honored and delighted that Teva allowed me to post it here.

Teva Harrison describes herself as “an ad hoc arts operative… an equal-opportunity maker living in Toronto. She’s in love with the natural world & fascinated by the spaces between (people, places, & ideas), & the way technology is changing our relationships. Her drawings are freeform explorations of evolving ideas. Teva’s ongoing graphic memoir explores everything from her magic-filled hippie childhood to what it means to live with metastatic breast cancer.”

What particularly struck me was Teva’s articulation of “cancer gratitudes” as a list of “at least” statements.

“At least…”

I think it must be human nature to look for something, anything, to break up the unrelieved burden of certain dire situations.

* Our house was destroyed, but at least we all got out alive.
* They took all my money, but at least they didn’t hurt me.
* I am hungry, but at least I have a roof over my head.
* I have no home, but at least I have a friend.
* …at least the children are safe.
* …at least the gas lines didn’t explode.
* …at least I have my health.

That seems to be the bottom line in dire situations: at least I have my health. But it’s not, really. Because when we no longer have our health what happens? We find new bottom lines. Mine is I have advanced, metastatic cancer but at least it’s still only in my bones, and also, …but at least I live in a country with excellent, accessible, almost free health care. For someone else it might be …at least I have a supportive family or …at least I can get a disability pension.

Once, during an online conversation with several other people with metastatic breast cancer, several of us were saying things like, “I only have bone mets. I can’t imagine what it’s like for you, with liver mets.” Others were saying, “I have brain mets, but it doesn’t hurt. I don’t know how you guys with bone mets live with the pain,” and “I live alone and have to take care of myself, but at least don’t have to take care of small children. How do you manage?”

Everyone seems to have an “at least”. Teva calls it the silver lining. Some people call it making a gratitude list or counting your blessings or shifting your focus. Whatever you call it, it seems to be a natural reaction for many people and a helpful one even for people (like me!) for whom it doesn’t come easily.

Do you have an “at least”? What is it?


Image copyright: Teva Harrison Be sure to check out her graphic memoir and blog at tevaharrison.com.

What Was Taken, What Remains

Rosebud dyingCancer is a thief, a cowardly thief. A mugger. A highway robber. Cancer waits at the side of the road until you walk by, just going about the business of living, and swoops down to denude you of almost everything. It’s an ambush.

What did cancer steal from me?

* my physical integrity
* my independence
* my good health
* my work
* some of my friends
* my freedom of movement
* the joy of making lace with beautiful fine threads
* my immune system
* life without constant pain
* my trust in my mental abilities
* my self-confidence
* my body image
* my physical stamina
* my ability to concentrate

Cancer stripped me and left me wounded at the side of the road.

Sometimes I feel angry about that. I’m not angry today. Today I feel a kind of sad nostalgia for my old life, my old self. I was confident, responsible, a take-charge woman. Today I am hesitant, fearful, dependent. Today I need drugs to function. The California university campus in the 1970s didn’t turn me into a druggie; cancer did. I take drugs to manage the pain every day. I take anti-depressant drugs. Sometimes I take anti-anxiety drugs and sometimes I take drugs to help me sleep. Who is this woman I’ve become?

When I stopped treatment I expected to die very soon after. Several years have passed and I am still alive. Alive, but diminished and slowly losing ground. I’m glad I’m alive. I love life. I am learning to appreciate life and living. Don’t you dare say that cancer was a gift or a blessing. It was not. It is not. I am learning to appreciate life and living not because of cancer, but in spite of it. I have known adversity in my life, and cancer is an ongoing adverse event. I am learning to live according to my beliefs in spite of everything cancer throws at me.

What beliefs? Which ones in particular?

* that my life on earth is temporary and eternal life awaits
* that my feelings are not the boss of me
* that love is something you do, not something you feel
* that I am responsible for my actions
* that God created me with all my emotions – and saw that it was good
* that all human beings are equal and equally loved by their Creator
* that I can choose my attitude
* that I am not helpless, not a hostage to circumstance
* that money and status are nice, but are not the most important things
* that I am not in control of most things, but I do have control of myself
* that forgiving others helps me more than them
* that I am very imperfect but I still have the capacity to change

It’s all a process. Sometimes I feel like Xena: Warrior Princess and at other times I feel like Anne of Green Gables – sometimes both in the course of an afternoon. That’s okay. One of the freedoms that comes with knowing that life will be much shorter than I would have preferred is the freedom to accept and love myself in all my different states. To love myself even when—especially when—I don’t fit into a neatly circumscribed box.

Yes, I do feel kind of nostalgic for the woman I used to be and the life I used to live, but it’s not a bad feeling. It is a bit like the last verse of the song that Ervin Drake wrote and Frank Sinatra sang:

But now the days are short, I’m in the autumn of my years
And I think of my life as vintage wine
From fine old kegs
From the brim to the dregs
It poured sweet and clear
It was a very good year.


Image copyright: Nicholas Piccillo