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

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

Complacency Interrupted


AdaptabilityI’m not even sure where to begin this post, so I’ll just jump in right about here and continue outward, possibly in several directions at once. I’ll be sure to sprinkle breadcrumbs along the way to help you follow.

I was lying on my back on an examination table in a small room. A very nice man, about my age had spread glop (technical term) under my arm and was moving the transducer around my right armpit. “I can’t find it,” he said. “I don’t even see it.” I pointed to the lump in my armpit with my other hand, and then raised my left arm so he could see that my left armpit had no lumps. He found the lump in question and then started moving the transducer around a bit more.

At one point he seemed to become more engaged in what he was doing. I couldn’t see the monitor, but I did hear clicks. I know those clicks, and they are not my friends. Those are the clicks the ultrasound machine makes when the tech is taking measurements of something. Those are not clicks we like to hear.

This is the part in the narrative where my writing self separates from my written-about self. Writing self is fighting tears. Written-about self gives a friendly smile to the tech and asks in a casual voice, “Oh, did you find it?”

“No, no, it’s nothing,” the tech smiles back. Liar. He grabs his phone off the desk and makes a call. “Can you come? No, now. I need you to come now. Yes. Okay.” The smiling, lying tech smiles at me some more and asks me to get dressed and wait in the corridor outside the door for a few minutes. He takes a printout from the machine and fan-folds it small enough to fit in the palm of his hand. Concealing it? Then, flashing me a final smile, he strides off.

I sit in the corridor next to a lady a few years older than I and we chat. She’s a retired hairdresser who still works a couple of days a week because who can live on social security and she discusses my split ends. (Thank you, dear.) I ask if her hair color is natural. (You’re welcome, dear.) We talk about surgeons we both know, and compare the amenities at various hospitals. (Yikes! When did I become this old person who’s been in almost every hospital in the city?) I was actually glad to see Smiling Tech come back, with a tall, bulky man in his forties following him. The younger man had “I’m the doctor” radiating from every pore. I got up to follow them back into the exam room, but the doctor gave a smile and a little bow and waved me in before him.

The whole story started almost a month ago now. I began to experience increasingly severe pain in my armpit that radiated along the inside of my arm. It was painful enough to wake me at night (even though I take strong narcotic pain relievers for the pain caused by the bone mets). It was so painful that I couldn’t use my treadmill because raising my forearm to 90 degrees to hold on was very painful. In short, it really, really hurt.

I’ve been avoiding doctors for a while now, so it took that kind of pain for me to go to my GP and ask for help. “It’s an infected lipoma,” he decided, so he prescribed antibiotics and gave me a referral for an ultrasound. The antibiotics didn’t help and the ultrasound appointment was still a way’s off. He sent me to a surgeon for a consult. “Not a lipoma,” the surgeon snorted. “It’s frozen shoulder. Go downstairs to the orthopedist. Here’s a referral.” Now, that didn’t even make sense, but whatever. I went downstairs to the orthopedist.

As it happened, I had met this orthopod before, when I fractured my ankle. He was a resident at the time, and he was so inept and caused me so much pain that I requested that he not treat me. And here he was; let joy reign unconfined. I walked in with a big smile, “Hello, Dr. S! I knew you when you were a resident.” “Long time ago,” he muttered. He read the growing pile of consult referrals, stood and walked over to me. He jabbed a finger into my shoulder. I jumped. “That hurt? It’s tendonitis. Bicep tendonitis. Take these anti-inflammatories and if it’s not better in a week go to physiotherapy. Here’s a script and a referral.”

Okey dokey. The drug Dr. S. gave me did help some, but I was still having considerable pain. The ultrasound appointment came around and I went. That brings us up to where we started. Are we all on the same page? Good.

Dr. L, whom the ultrasound tech had run off to bring, was very kind. He did a very thorough ultrasound exam, front, back and side. I heard the machine clicking away, recording more measurements. “Just one more moment and I’ll finish, then I’ll explain everything to you.”

The explanation was simple. I have a finding that appears to be an infiltrated lymph node in the axillary tail1, and another finding in the breast itself, which is oval and looks like a cyst. “We have to do a biopsy. I’ll write up my report and then you can make an appointment.” He smiled kindly at me and I tried to smile back, but I was crying.

My first breast biopsy was physically and psychologically very painful. It was at a different clinic . This one will be at the breast center instead of the general diagnostic radiology clinic. I hope that means that the clinicians will be more sensitive. I’ll let you know after the 28th of June.

1. The axillary tail (also called Spence’s tail, tail of Spence, or axillary process) is theaxillary tail part of the breast tissue that extends into the axilla (armpit). This drawing of a left breast illustrates the approximate shape and location.

Additional Note: I created the top image with the meme generator and the quotation is from Open Sesame by Tom Holt, which I’ve never read.

Cancer isn’t cute! (repost)

What with one thing and another it seems like a good time to bring back this post from two years ago. 

Cute Kitten

This kitten is cute. Cancer is not.

Cancer isn’t cute. It isn’t big smiles and noses crinkled in mirth. It is a mortal illness. It disfigures. It kills. The treatment involves cutting off pieces of your body, killing living tissue with radiation, poisoning your system with chemotherapy. The treatment can have life-long effects on your health and well-being   And that is still no guarantee. Thirty percent (almost one third!) of women diagnosed with breast cancer AT ANY STAGE will end up with distal metastasis.

To be clear, distal metastasis means Stage IV breast cancer. Stage IV cancer is terminal breast cancer.

Cancer isn’t cute, and breast cancer isn’t “the good cancer”. How can anyone possibly call a disease that kills almost one-third of the people who become ill with it “good”? This isn’t about boobies or tatas—it’s about a killer disease. When I was first diagnosed I didn’t give two toots about saving my “girls”; I wanted the cancer out of me.

When I was first diagnosed, I experienced and conceptualized the cancer as a rapist inside me. GET THIS THING OUT OF ME! There was nothing cute about it.

When I had my breast and lymph nodes removed and sat with surgical drains coming out of the incisions and I couldn’t lift my arm high enough to hang up the laundry, there was nothing cute about it. When I was having my first round of chemotherapy and all I could vomit was bile and I could barely hold down water – there was nothing cute about it. When I had radiation burns over two-thirds of my chest from the daily radiation treatments – not cute.

The rapist is still inside me. I have not learned to like him, but I am learning to live with him because I want whatever time is left to me to be as pleasant and productive as I can make it. I do not want to waste precious time and energy on howling at the moon. That doesn’t mean I’m not angry; it means I can accept my emotions and move on.

Well-meaning as they may be, pink ribbons and cutesy “awareness” campaigns make me angry. To me, they feel belittling. They make me feel ignored. They make me feel cast aside because I have a a disease that is killing me. Go ahead and have a great fund-raising campaign and use the best PR tricks you can, but please don’t ignore the reality.

Cancer isn’t cute, not even tiny little Stage I tumors. It bears repeating: thirty percent (almost one third!) of women diagnosed with breast cancer AT ANY STAGE will end up with distal metastasis.

I am one of the 30%. Awareness is nice; research is better. If you donate to a breast cancer cause, know where your money is going. Give to organizations that are actively funding research. You can always buy a pink ribbon at the notions counter.