Thank you, Dr. Ewing

Dr. James R. Ewing (1866-1943)

Dr. James R. Ewing (1866-1943)

Hi there! Remember me? I’ve been going through a very rough time, physically and emotionally, and just couldn’t bring myself to the computer to write. I didn’t want to look that closely at what was going on. But now I’ve come to what feels like a good place to stop for a minute and touch base with everyone.

Some of you know that for the last couple of months I’ve been dealing with what I call “the alien baby”: a rapidly growing mass under my right arm. I’ve been examined by different doctors (surgeon, orthopedist, family practice) and tried different treatments. I was finally sent for an ultrasound and the alert technician went a little farther than he strictly had to and insisted that a radiologist come and see me right then (see Turbulence Ahead), setting in motion a focused diagnostic effort. Two biopsies (along with a PET/CT, a bone scan and other tests) and several visits with my new oncologist later, and I have an official diagnosis: Ewing sarcoma.

Ewing sarcoma was first described in 1921 by Dr. James R. Ewing, the American pathologist who wrote the first oncology text book and whom Time called “Cancer Man”. It is primarily a pediatric cancer of the bone or soft tissue, but according to the American Cancer Society only about 1% of childhood cancers are in the Ewing family of tumors. In adults it is even more rare. It is also rare for a Ewing sarcoma to present with a primary in the breast or axilla (armpit).

(Me? Just lucky, I guess. Maybe I should buy a lottery ticket.)

Ewing sarcoma is an aggressive cancer, so the team at my cancer center has proposed aggressive treatment. I’ve agreed to the plan, and I’ll probably write another post about that, since I have refused treatment for so long.

The treatment I’m looking at is planned to last about two years. There will be 17 cycles of chemotherapy, with each cycle lasting six weeks. After a few cycles I’ll have another PET to see if there is any progress and also so the surgeon can decide if the tumor is operable after all. After surgery, if any, I will go back to complete the rest of the 17 cycles of chemo.

The cycles consist of six chemotherapies. In Week 1 of each six-week cycle, I’ll receive one day of chemo with several agents. In Week 4 I’ll have five consecutive days of one agent (maybe two). This won’t be continuous, so I’ll have to go to the center every day of that week. Three weeks after that, I go back to the beginning of the cycle.

In terms of “side effects” (I much prefer the term “collateral damage”), I can look forward to baldness, nausea, diarrhea, red urine, peripheral neuropathy… the usual. I will also be closely followed in terms of cardiac and hepatic function and, of course, those blessed neutrophils. (I’ll be getting Neulastim (pegfilgrastim) regularly.)

It’s so much easier to talk about facts and schedules than feelings. I’m crying a lot these days. I feel bewildered and overwhelmed, but writing things down, making lists and using the calendar in my phone all help. I do not feel at all like the strong woman I know I have been and will be again. I’m focusing on losing my beautiful, long hair because it is easier to think about that than all the rest. Just as I started writing this, I realized that I have to work things out with my helpers by next week, give out some more house keys, and so on. I have to write some emails to various people.

Why did this happen to me? Why did I get with a second cancer, one that is very aggressive? I have no idea. Sometimes things just happen.


Image from Wikipedia: “The National Library of Medicine believes this item to be in the public domain.”

A New Cancer – because one isn’t enough?

I published this post a couple of years ago. I’m feeling pretty beat up today and going back to Invictus has helped me find the courage to keep on keeping on. Before going on to the old post, a little new information: The alien baby is definitely a new primary. It’s a sarcoma. I don’t know yet what kind of sarcoma, but I’ll be able to read the biopsy report later today. The oncologist I fired only treats breast cancer, so that works out well: I’m going to see a new oncologist Monday morning. She’ll probably order some imaging, maybe a PET-CT, and we’ll take things from there.

And now back to Invictus. The post was originally published on 26 January, 2012.

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A smarty and funny Twitter friend and blogger recently reminded me of William Ernest Henley’s poem Invictus. Think of it as a Victorian teenage boy’s version of Gloria Gaynor’s I Will Survive. At the dawn of his adolescence, Henley was stricken by osseous tuberculosis, eventually having to endure a below-the-knee amputation at age 17. He must have suffered severe pain throughout his teen years and young adulthood. It is said that Invictus was inspired by the amputation; it was published in 1875, when Henley was 26.

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Far from expert on the Victorian era, I have the impression that it is a time of contrasts: sickly sweet sentimentality coyly nestles up to the robust “manly virtues”. It is the era of “muscular Christianity” and of strictly defined class structure and social systems. It is an era rife with sexual taboos, but its pornography is read to this day. An era of contrasts, of division, of merciless social expectations. Individuality was not encouraged.

The title Invictus (“undefeated” in Latin) was not Henley’s, but that of a later publisher. But it is perfect, isn’t it? A young boy suffering from a painful, usually fatal illness. Boys don’t cry in that time and place; they soldier through. Despite looking at first blush like a poem of extreme self-reliance, to me Invictus reads like a battle cry of strong faith in the midst of desperate circumstance.

He recognizes the reality of his illness and his grief at the loss of health and limb (the night that covers me, black as the pit) as well as the reality of his “unconquerable soul”. He graphically describes his physical and mental suffering (Under the bludgeonings of chance / My head is bloody…) and his survival (…bloody but unbowed). Looking forward, he sees nothing but more trial, more suffering, death. And then the afterlife:

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

My reading of this, which may be unorthodox, looks very much like Erich Fromm’s point in Man’s Search for Meaning. I am living in circumstances I cannot change or control, but one power will never be taken from me: the power to choose how I deal with it. And the way I deal with circumstances of necessity changes the way they affect me. It is a dynamic relationship: by changing myself I have changed reality.

There is a Jewish saying common among the Orthodox and the Hassidim: הכל בידי שמים חוץ מיראת שמים. Loosely translated, it means “Everything is in God’s hands except fear of God.” That is where free will comes in.

I can choose how I live. As a person who believes in the Christian afterlife, I believe that how I live today will affect how I spend eternity.

I am the master of my fate:
I am the captain of my soul.


Image credit: William Ernest Henley Vanity Fair 1892-11-26 (from Wikipedia)

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.

whats_yours_logo

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.)

Pain

Pain ThermometerA white hot knife sawing back and forth in my breast, my armpit, along the underside of my arm to my elbow, then a dull ache down to my wrist. Even my skin feels raw, as though the top layer has been abraded away; the lightest touch of a fingertip feels like an open flame being held to it. In vain, I seek a neutral position for my arm, trying to find some way to hold it that doesn’t exacerbate the pain. Nothing helps. I can’t extend it, can’t bend it, raise it, straighten it – nothing. Stirring a cup of coffee is excruciating. The pain drills straight through to my back.

I pace around the room because I can’t sit or lie still with this pain. I’m crying, moaning, yelling. ”Why is this happening to me? Dear Lord, what did I do to deserve this? Make it stop. God, make it stop!” It’s the middle of the night and I know that I’m yelling loud enough for the neighbors to hear. I can’t help it. I hear the sound of my moaning and wonder if the neighbors will think I’m having insanely wild sex in here. The idea makes me laugh, but the laugh redoubles the pain and turns into a scream.

I finally get up the courage to go up the stairs (each step twists the white hot knife in my armpit) and open the cupboard and get out the lock box with the narcotics. So many arm movements in all of that, each one a new summit of torture. Fitting the key into the lockbox, turning it. “Dear Lord, make it stop. Make it stop!” Fumbling with my left hand, I manage to take out the antihistamine that I have to take with the narcotic, take out the narcotic itself. I swallow the antihistamine tablet dry and thank God that the narcotic will dissolve in my mouth.

Slowly, torturously, I make my way back down the stairs. I wait until the drugs start working before I attempt to lie back on the bed. More time passes. I finally lie down and try to find a less painful position. Suddenly… the pain is gone. I am still marveling at what absence of pain feels like, and I sleep.

That was last night. I ended up sleeping until 5:30 this morning. I started to make a mug of coffee so I could sit outside and enjoy it in the morning breeze, but that knife started stabbing my breast again. I lay back down in bed and was delighted to find that there was still enough drug left in my system that I could relax. I slept for another five hours.

As I’m sitting and typing this, I can feel it starting up again. I don’t know what this pain is, just that it’s related to the “thingy” under my arm that I had biopsied a week and a half ago, the thingy that could be a new primary or new progression of the existing mets or maybe an alien baby. Hey! If it’s an alien baby, maybe these are alien baby Braxton-Hicks contractions!

I’m crying real tears now. Tears of pain, frustration, grief. I didn’t do anything to deserve this disease. It is not my fault. I know that it is “just something that happened”, a random bad thing. It’s hard not to take it personally, though.


Image copyright: iqoncept

Turbulence Ahead

TurbulenceI am so ashamed.

All these years I’ve been living in a snug little, smug little complacency bubble. At some point in the past decade and more I lost track of the fact that bone mets doesn’t stay put. I managed to turn my back on the fact that at some point my cancer would metastasize further. My head knew that my lungs or brain or liver or some other part would one day be colonized by the cancer, but my gut kept that knowledge buried deep.

Oh, I said the right things all along. No, that’s not it exactly; it wasn’t mere lip service. I always knew that I would die of breast cancer. I wasn’t just mouthing words. It’s more that there was a huge disconnect between my head and my gut.

Well, that’s all over now. As I wrote about three weeks ago, a large, painful swelling had developed under my arm. I saw several doctors and ultimately was referred for a biopsy, which was performed yesterday. The interventional radiologist who did the procedure found a 5 cm solid mass. She wouldn’t let me see the screen and she wouldn’t answer my questions so I don’t know exactly where it was, in the tail of Spence* or the breast proper or an axillary lymph node. She also wouldn’t tell me if the edges were defined or not. I was told that the mass is hypoechoic, which would be more common in malignancies than in benign masses.

So, given all that and even though it will be about a week and a half before the path results are in I don’t think I’m making too much of a leap to start thinking in terms of progression. Of course, it might be a new primary. That happens, too. And there is still a chance that it’s not cancer. Not much of a chance, but even still.

But that’s all the factual up-in-my-head side of things. The other side of things is in my gut. I can’t seem to stop crying. A friend of mine, someone I’ve known for years, is in hospice now with liver mets from breast cancer. She badly wants to be able to go home, to die in her own bed in her own room. That’s what I want for myself. To die at home, not in an institution.

If I have a new primary, I’m not sure what I’ll do. If they offer surgery I may accept it for aesthetic reasons. Being a uni-boober who hates wearing a prosthesis makes fitting clothes hard. I’d rather go flat, I think.

Will I go back on chemo? I don’t think so, but I’m not sure. I’ll probably agree to a round of scans if the doctors want that, since I haven’t had any for a very long time. I’ve always said I’d revisit my “no more treatment” decision if there is progression to soft organs, and that time may have come. Information will be needed to make a good decision.

All that is in the future. Right now I’m in pain from the lesion itself and from the biopsy. I have the anxiety of waiting for the biopsy results, which won’t come before the 8th of July, if then. The next couple of weeks will be a time of living in the present, day by day. Not a bad thing in itself.


* axillary tailThe tail of Spence or axillary tail is the breast tissue that goes up into the axilla (armpit).

Turbulence image copyright: shottythefirst/123RF Stock Photo