The Electrician Didn’t Come

The urge to write has its own mind, body and force of will. Holding it back would be like stopping a flood with a spoon.I want to write a blog post today, but I don’t have a topic. I mean, it’s not like there aren’t plenty of topics floating around. I could just reach out my hand and grab one, but none of them are really calling my name. Yet I have the urge to write.

When I get the urge to write, it’s like needing to sneeze. No way on God’s green earth am I able to repress it. It’s got to come out. Even on those rare occasions when I’ve been without computer or paper and pen I’ve “written” essays or articles or poems or songs in my head because when that writing feeling comes upon me, I have to write. No way around it.

So I need to write, to scratch that itch, to sneeze, to breathe deeply because I suddenly realize I’ve been holding my breath. That’s what it feels like.

Let’s see. I could write about my last unpleasant encounter with my oncologist, whom I generally like, but I don’t feel like getting into all that right now.

I could write about my garden, which is looking much better since I fixed the computer-timed irrigation that had somehow gotten turned completely off. Funny how regular watering improves the look of a garden in summer. But that’s not a whole post.

I could write about my struggles with myself—my pride, my skewed self-image—in terms of accepting the limitations of my illness, using my walker, taking medicines as prescribed instead of deciding I know best. (I generally take far less pain relief than the doc wants me to, for example.) But I’ve been there and written about that so many times.

I could write about some new interesting research developments in the world of cancer treatment in general and breast cancer research in particular, but I’ve come to realize that I’m a poor science writer. (Oh! Does anyone have any ideas on how to learn to do that well?)

I could most certainly write about certain political developments in my country and around the world that make my blood boil, but I’ve pretty much decided to stay away from politics in this blog. I don’t want it to become divisive.

So then: what shall I write about?

The electrician was supposed to come to fix a couple of things this morning, but it turned out the police had my part of the city blocked off. I heard the helicopters and sirens, but I don’t know what happened. Anyway, the electrician couldn’t get through. He’ll come on Tuesday.

While I was waiting, though, I was able to go out into the sun and trim back the sage that is growing over the pathway next to it. I can’t do much gardening at all these days, so it was fun even to go out with my walker and lean over and do a little bit of trimming. I enjoyed the sun and the smell of the flowers and herbs and the sounds of the bees and the birds and the feeling of the herbs on my hands and my fingers in the dirt.

My new medicine is causing some nausea (an expected and transitory side effect), so I took a piece of chicken out of the freezer to defrost. I’ll make some chicken soup and rice or something like that later on, I guess. I’d like to have a salad or gazpacho, but I’m not sure my stomach would handle it.

Here you are: over 600 words about nothing because the urge to write came upon me. Does this happen to you, too? And as long as we’re talking, is there anything you’d like me to write about the next time I get the urge and I’m light on topics?

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Pain, physical and mental

Collage of words: pain, anxiety, stress, depressionFirst a quick update on the cancer front. There is new pain in my ribs. The diagnostic radiologist didn’t see anything on the ultrasound, so she’s recommending a PET-CT as the next step. I haven’t been able to reach my oncologist (who is the one who has to order it) through the clinics where she works, so I’m going to call her on her mobile. I don’t like to do that, but after discussing it with my GP, that’s what I decided to do. I’ll try to reach her today. I don’t like being importunate and I always avoid taking advantage of anything that might smack of privilege, so it was a difficult decision for me to make.

Then there are the mental health issues. When I saw the onco a week or two ago I discussed my anxiety with her, and we talked about the prevalence of anxiety in people with cancer. She was very emphatic about it being a quality of life issue and strongly encouraged me to talk to my GP about it.

Now, I have never explicitly stated in this blog that I used to be a mental health professional, but perhaps the time to “come out” has arrived. Like many MH providers, I apply a double standard to myself, preferring to think that I can deal with just about anything using my own resources. Like many MH providers, I’m full of bull puckey. In point of fact, I am well past the point at which I’d suggest to friends, let alone patients, that they need help.

So I packed up my false pride and machismo (machisma?) and asked my GP, who is a former colleague, what he thought. He kindly and matter-of-factly asked a few open questions and offered me Venlafaxine (also known as Effexor), a drug that is used for depression, anxiety and even neuropathic pain (like post-mastectomy pain syndrome). I’ve agreed to give it a try, along with my usual routine of quiet prayer and meditation, mindfulness exercises and as much exercise as my exhausted body can tolerate.

So that is what taking care of myself looks like today. Writing openly about these difficulties is also a way of taking care of myself, and maybe also of encouraging other people to take care of themselves. That is the paradox of writing a blog like this. I started it for myself, and its primary purpose is still to provide an outlet for my thoughts and feelings. Over time, more and more people have started reading it, and some people have told me that they are able to relate to it and get something positive from it. That makes me very happy. Thank you.

(When I get news about the PET-CT, I’ll post an update here or on the blog’s Facebook page Telling Knots, the 30%.)

ANNOUNCEMENT: I am not dying yet

My most recent post was a reblog of “Starting to see the light” from the blog “Living Life to the Fullest from End Stage”. There is a sentence stating that at the top, above the graphic. It was not my post.

But the WordPress reblogging layout is confusing. I apologize. The next time I reblog, I will not do it by clicking on the button.

I reblogged that post because I thought it was beautiful and I hope that when my time comes that I will have something of that approach and attitude. I am not at that point yet.

I am deeply sorry for the confusion and for any pain that may have been caused.

My oncologist and I

choosedocEarly in July I have an appointment with my oncologist. She is younger than I, but more and more people are these days. Her father is an extremely well-respected doctor in his field, a longtime member of the Israeli medical elite. I don’t think she rode on his coattails throughout her training, but there is something of the aura of the elite that hovers around her. She and I do not have a natural affinity, but we have mutual respect.

I had no idea of how to choose an oncologist. The way it worked was this: After the biopsy confirmed the diagnosis my family doctor referred me to a surgeon. I didn’t really care who the surgeon would be because I knew what procedure I would have, and it was a pretty standard one. A day after my mastectomy, the hospital’s breast cancer nurse came to talk to me about, among many other things, choosing an oncologist.

By the way, a word about breast cancer nurses. I’ve come in contact with two, at two different hospitals, and could not be more impressed. Both had advanced nursing degrees, as well as a doctorate. Both were knowledgeable, caring, funny, supportive, respectful of my level of knowledge, and empowering. They gave me all the time I wanted, provided multiple ways of getting in touch with them, and “followed” me as long as I needed. I am confident that even today, years after my last contact with either of them, I could call either one and get whatever I need. Breast cancer nurses rock, if these two are anything to go by!

So the BCA nurse came to my room on the post-operative unit. When she arrived, a couple of friends were at my bedside, both of them nurses at the same hospital. She stayed and exchanged pleasantries with them for a few minutes, and they left to go to work. Then she told me her story.

This particular BCA nurse had had breast cancer herself and at that time was NED (no evidence of disease). She told me the story of how she had felt and reacted, not too much detail, but enough to help me feel more comfortable. We had a good connection. She gave me a lot of new information that day, and she gave it to me in a way that I could take in. One of the nicest things about her, was that she did not appear to mind pausing while I made notes, considered what she had said, formulated questions.

We got to the part about choosing an oncologist. She asked me what I wanted in an oncologist and we talked about that for a bit. She told me that she could think of two oncos who would fit: one was a professor and head of department, the other a senior attending at a very young age. In terms of professional skill, she said, they were pretty much equals. I asked if either had a sense of humor. She laughed and told me to stay far, far away from the professor. So I chose the other one.

I have always had the option of switching to a different onco, and I still have that option, but so far feel no need to go shopping for another one. We are not people who would hang out together, but that’s fine; this is not the nature of our relationship. She is quite decidedly non-religious, and I am quite decidedly a religious woman. Far from being a source of conflict, this has led to some fascinating conversations during the exam. I still remember a great exchange of ideas about expressing solidarity with the poor and marginalized of society. Once I got over the idea of talking about such things while I was wearing only underpants (gowns are often not provided for exams here), it was a really good exchange.

Also, she has the courtesy to laugh at the feeblest of my jokes. What more could I ask for?

 

I have WHAT? Coda: Mastectomy

Breast cancer cellThis week I posted the last of three posts about my diagnosis with breast cancer at the end of 2003. Now it seems appropriate to post about my mastectomy. This post, originally called “Valentine’s Day 2004 or… I left my breast on the Mount of Olives” first ran on February 14, 2012. To recap: Part 1 (discovery), Part 2 (biopsy), Part 3 (diagnosis).

Fourteenth of February, 2004. There was a heavy snowfall. In Jerusalem that is almost as rare as it is in Los Angeles. Many streets were closed, and many people were afraid to drive on the streets that were open because, after all, Who knows how to drive in the snow in Jerusalem?

I was in my bed in the hospital and prepped for surgery. The orderly came to take me up to the operating room and I freaked out. No, don’t want! Stop – there must be a mistake – no, no, no! But all that was mostly on the inside. On the outside I appeared anxious (who wouldn’t be?) but rational.

In pre-surgery a male nurse came over to take report on me and check me over. He introduced himself and asked all the questions. He took a marking pen and made a huge mark on my left breast. Goodbye left breast. I made some feeble joke about not getting the wrong one, and he kindly and seriously told me that he would make sure of that. He stayed with me until I went under the anesthesia.

They wheeled me into operating room. People were bustling around doing their jobs. The nurse stayed with me. I heard two other nurses talking about the snow and wondering aloud if the surgeon would make it in. What? He’s not here yet? Please don’t tell me I’ll have to go through this again.

A surgery tech brought out the instrument tray. I looked at it with what I hoped was an interested expression on my face. It was probably more like sheer terror, because my nurse asked another one to set up the screen in front of my chin. “But isn’t she having a general?” “Please, I’m asking you. She’s looking at the tray.” So they set the screen up. But now I can’t see! How can I be sure you’ll do everything right? I can’t see! 

All of a sudden I felt a bustling, a purposefulness in the room. “Is the surgeon here?” “Yes.” Terror. Oh dear Lord! God, my God, bless his hands. Bless the work of this team. Bless me and give me strength to get through whatever comes next. Dear God, I am so afraid! Be with me now.

The anesthesiologist came up next to me and uttered the canonical phrase, “You’re going to feel a little prick now.” Excellent! The pleasantly heavy calmness settled over me, and…

* * * * *

Pain! I started panting like a woman in labor. Hoo hoo hoo hoo. My friend Jeannie, also a nurse, was standing next to me. She signaled the Recovery nurse who came over with an injection. I slept again.

The next time I awoke, still in Recovery, I was in pain again but aware of my surroundings, aware of Jeannie. Aware of the bulky dressing and the surgical drains where my breast used to be. Aware of the drain under my left arm. Aware that the surgery was over. Aware that pain could be controlled.

Aware that my life had forever changed.

My friend Aliza wrote about this day from her point of view. Please read her guest post here

I have WHAT? Part 3 – You have cancer.

Breast cancer cellI wrote Part One (Discovery) of this series last December, followed quickly by Part Two (Biopsy). It’s taken me over half a year to write the third part of the series. The biopsy was a traumatic experience for me and the way I write is to bring myself back to the experience itself. Writing about it left me more upset now, years later, than I was then. At the time I was shell-shocked and didn’t have the internal resources to really feel everything. Now I do have those resources. Something of a mixed blessing, to tell the truth.

All that is to say that you may want to read those first two posts before this one.

Almost a month after the biopsy, I received a phone call, telling me I had an appointment with the same professor who had done the biopsy. I wanted to ask if there was anyone else who could see me, but I was still too much in shock to speak up for myself. Oddly, I chose to go alone.

The appointment was in the same place as the initial mammography and ultrasound and the biopsy–the general x-ray department of the clinic. I arrived about fifteen minutes early and checked in with the very busy receptionist. I took a seat as she instructed.

I waited and waited, growing increasingly nervous and agitated. I could hardly speak when after about an hour I went up to the receptionist and asked what was happening. She curtly told me that “they” knew I was here and to take a seat and wait patiently. (Why do some medical and ancillary personnel feel that they have the right to speak to patients as if we were small children?)

After another forty-five minutes or so, I saw a nurse coming out of the hallway where I knew the professor’s office was. I went up to her. “Excuse me.” Her eyes widened. Clearly she was not used to being accosted by patients. “Do you work with Professor Tact?” “I do.” “Could you please tell him that Knot Telling is here and I’ve been waiting for a couple of hours now to hear the results of my biopsy?” Her expression changed to one of pity and she said, “Wait here,” and stepped into the professor’s office.

Now, it must be said that by this time I knew it was a malignancy. You don’t get called to an appointment with the professor to be told nothing is wrong. I sort of knew it was a malignancy from the moment the mammography technician told me to sit in the hallway and wait for an ultrasound. But still…

I am sitting at my computer in my home. This is just a memory. So why do I feel the icy fist clenching my heart and why are my breaths  quick and shallow and why are there tears backed up behind my eyes? Hey, here’s a good thing about having metastatic disease: you never again have to be afraid of hearing the words “you have cancer”. But back then I was still irrationally hoping for it to something else, anything else.

The nurse opened the door to the office and waved me in. She left and shut the door. The professor was yelling into the telephone, demanding to know who was at fault for something. The young doctor who had done part of my biopsy was standing behind his chair. I stood just inside the door, not sure if I should wait outside until he was done with his call or what. He looked up and waved me to a chair in front of the desk. I sat down.

“Tell her to come in here,” the professor shouted as he banged down the telephone and picked up my file. He turned a few pages back and forth and then looked up at me as there was a brief knock at the door and a secretary came in. “I’m busy,” he yelled at her. “You just stand there until I finish with this.”

I was beside myself. I didn’t want an audience while I got this news and I didn’t want to be an audience to whatever scolding that lady was going to receive. I was still too cowed to say anything. Professor Tact glanced at me and then back down at the file. “Okay, it’s malignant, but we knew that.”

I felt as though the top of my head was floating away. I couldn’t feel my hands or feet. I heard him yell at the poor secretary to leave and come back when he called there. I saw the top of the desk, I saw the young doctor’s pitying face, I saw the professor’s hands turning pages in my file.

I don’t remember leaving the office or the building. I remember calling my GP and telling him I needed to see him, and he said he had the results on his computer, too. I don’t remember where I went when I left the clinic, if I went home or to my GP or my priest or what.

I do remember knowing that things would never again be the same.

One Advantage of Dying?

Have you noticed how many television shows and movies have a cancer theme these days? And how many of them deal with breast cancer? And how uplifting and inspirational they are, as a rule?

In order to keep the shows so relentlessly positive, of course, they don’t show much metastatic cancer. I did see a British TV show (a comedy-drama series) the other day that had a lady with metastatic cancer in one episode. This lady, thinking she had a year left to live, offered the visiting nurse coffee. The nurse took a sip and, “This has whiskey in it!”

“Brandy, actually,” the lady replied. “One advantage of dying is that you get to do all the things that are supposed to kill you.” Her goal was to cram a lifetime’s worth of experience into that last year.

I admit that I play that card sometimes. I am not above enjoying slightly discomfiting nurses and doctors and casual friends. If someone comments about my eating too many artificially flavored foods or something like that, I say, “What? It could give me cancer?”

I do have a sense of humor that has been one of primary defense mechanisms as well as one of my greatest coping techniques. (Two sides of one coin.) I like to joke and kid around. I love absurdity and anachronism. I am fundamentally happy. (Remember that the fundament is what is at the bottom, the foundation. It is not always visible, but it’s always there, holding everything up.)

(I also really, really love parentheses as a written form.)

I’m doing pretty well, all things considered. I have a couple of new pains that I’m going to discuss with my oncologist at our appointment next month. No point in making a special appointment—I know what is most probably causing the pain, I have pain meds at home. I don’t see any practical benefit to knowing that yes, it’s more mets, and if it’s something else, it’s not urgent and the onc will let me know in due course.

Don’t get me wrong. I am afraid of progression. I know that the cancer will inevitably progress and then progress some more until it kills me. I am not complacent in the face of that. But I can’t do anything about it that I’m not already doing, so when I feel afraid, I look at it, recognize it, let it go.

It’s not only alcoholics who can benefit from the beginning of Serenity Prayer. Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

This isn’t a one-time thing, this letting go. I do it over and over again, every time I get scared. Sometimes I cry and talk to a friend about it, sometimes I write about it. Sometimes I just keep it to myself… to myself and God. But I do let it go each time.

I liked the TV show I saw the other day. Toward the end, the visiting nurse had to give that lady the news that her last MRI showed progression in several organs. “How long do I have,” the lady whispered. “Two months,” said the nurse.

The lady’s face crumpled, her body seemed to collapse inward, and she cried. Then she straightened up, took a deep breath and said, “Well. I think we can skip the coffee today and go straight to the brandy!”

That was real.  Thank you, writers of Frankie.

Taxol Dosing – new study

Wikimedia Commons image

Paclitaxel was originally isolated from the bark of the Pacific yew tree, where it is synthesized by endophytic fungi.

“The addition of new chemotherapy drugs has not improved outcomes. Thus, we need to give the active drugs in the best way,” says G. Thomas Budd MD of the Cleveland Clinic. Dr. Budd reported a very interesting study comparing two dosing regimens of Taxol (paclitaxel) at ASCO 2013, this year’s annual meeting of the American Society of Clinical Oncology, which took place from May 31st to June 4th.

I was particularly drawn to this abstract because Taxol caused what was probably the most unpleasant experience I have had to date on chemotherapy. Oh, I lost four kilos a treatment on the AC schedule, but vomiting could be controlled. But Taxol… Taxol quite literally took my breath away. My chest hurt and I was coughing and gasping for air. The friend who had accompanied me to that first dose, a nurse herself, started me on oxygen and went for the chemo nurse. They put me on steroids and something else that made me sleep. From then and for the rest of the series of Taxol treatments, I received a bag of IV steroids before the treatment, then something that made me sleep, then finally the Taxol. It was not fun.

So it was interesting to read this abstract. I won’t go into the details of the protocol, but you can read about it at the links I’ve provided below. The part that concerns us was the comparison of two dosing regimens for Taxol: the traditional “dose-dense approach” given every two weeks that was developed at Sloan-Kettering, and a lower dose given weekly.

Discussing the conclusions of the survey, Dr. Budd said: “Either regimen can be selected on the basis of efficacy. So in practice, treatment can be selected based on other considerations, such as toxicity.”

Toxicity of cancer drugs is graded on a scale called the Common Terminology Criteria for Adverse Events (see National Cancer Institute Wiki FAQ on the CTCAE) that ranges from  0 (no adverse effect to 4 (life-threatening adverse effect). (Grade 5, death, does exist on the scale, but was not a factor in this study). The study found that both regimens had grade 3/4 toxicity, but that the “toxicity profile” differed between the two. The dose-dense protocol led to more allergic-type reactions, whereas the lower weekly dose showed more hematological toxicity.

The study concluded that 12 weeks of low-dose Taxol produces less overall toxicity than  six cycles of dose-dense treatment (one cycle every two weeks).

What are the implications for me? If my oncologist should suggest putting me back on Taxol (it has been shown to have some efficacy in stage IV breast cancer), I would definitely ask about the weekly schedule. (It may not be possible in my case due to chronic neutropenia, but it’s worth investigating.)

Notes:

It should be remembered that these findings were presented orally at ASCO and have not yet been published in a peer-reviewed journal.

The study was funded by the (American) National Institute of Health and Amgen.

The abstract, which was presented orally, can be read online here and there is a discussion of it by Medpage Today staff writer Charles Bankhead here.

Pain is in the brain

This image shows regions of the "neurologic pain signature," a standard map that can be applied to individuals who may be feeling pain. The map was developed based on heat pain applied to participants' forearms. Activity in yellow areas is predictive of higher levels of pain, and activity in blue areas is predictive of lower levels. (Photo: Tor Wager, University of Colorado, Boulder, via AP)

Pain is much on my mind lately. As recently as last November I wrote a post (Pain) in which I talked about my reluctance to use narcotic pain relief. Recent readers of Telling Knots will know that I have since agreed to take the stuff in spite of my objections. I still hate it and I still take as little as possible as infrequently as possible.

I wish there was a non-narcotic medicine for moderate to severe pain, and every now and then I spend some time on PubMed looking for answers. I stumbled across some fascinating findings today.

The image above and its caption are from USA Today online article from April 10, 2013. (Please hover over the image with your mouse to read the explanation and photo credit.) This very exciting research used functional Magnetic  Resonance Imaging (fMRI) to develop a “neurological signature” of physical pain.

A free preview of the original article in the New England Journal of Medicine can be see online here.

It is very, very early days and this research consists of four studies with a total of only 114 healthy subjects in the laboratory. Even so, the possibilities are tantalizing. The USA Today article quotes lead author Tor Wager: “”Many people suffer from chronic pain, and they’re not always believed. We see this as a way to confirm or corroborate pain if there is a doubt.”

The novelty of this study is not simply producing an image of what happens in the brain when pain is perceived, but in producing a combined signature that can actually measure pain. Furthermore, the researchers were able to distinguish physical pain from social or emotional pain.

As I said at the beginning of this post,I wish there was a non-narcotic medicine for moderate to severe pain, and obviously, I am not the only person interested in this: the study was partially funded by the (United States) National Institute on Drug Abuse, for example.

Aside from this being very cool research that may have many fascinating applications in the not-too-distant future, there is one aspect of it that I immediately hooked into. As Dr. Allan Ropper told USA Today, “This is beginning to open a new wedge into brain science,” Ropper said. “There may be completely novel ways of treating pain by focusing on these areas of the brain rather than on conventional medications which block pain impulses from getting into the spinal cord and brain.”

And that made me do a happy dance. Can you imagine how wonderful it would be to be able to treat pain (the whole pain, and nothing but the pain) without the side effects of narcotics? I know this is far in the future and I may not live to see it, but just the fact neuroscientists are working on it makes me very, very happy.

Chronically terminal rumination

 Last week I published a post about ways of referring to people with cancer at different phases of the disease (Cancer Words), mostly based on an article and a letter in the Journal of Clinical Oncology. (The link will take you to a Medscape Nurses review of the discussion.)

You know how a cow chews her cud? (Bear with me here.) She ingests her food and it goes into the first part of her alimentary canal, the rumen. Then she regurgitates the partially digested food and chews it up some more. This is called chewing her cud, and it is the characteristic of animals we class as ruminants.

Now then. This should make it clear that ruminating is not unlike throwing up a little in your mouth, an unpleasantness I try to avoid. On the other hand, some concepts do bear more than just passing consideration, and how to refer to my disease is one such. (Okay, at this point I should probably let you all know that I’m writing this post while under the influence of oxycodone. Keep up with the drivel, and we’ll ultimately get somewhere together.)

My problem with the terminology can be summed up like this:

  • I am not a survivor. I haven’t died of cancer, but there are secondary tumors at various places in my body. Active cancer.
  • I am not terminally ill. That is, I am terminally ill, but not in the sense of qualifying for hospice at this point.
  • I am chronically ill, but not in the sense of someone who has schizophrenia or diabetes or hypertension, in that I will eventually die of this chronic illness, God willing.

(“God willing” meaning that I’ll die of cancer unless  a war or terrorist attack or something, which is not all that unlikely around here, kills me first. Or the end of the world. Whatever. The point is, I’d rather live out the span allowed me, even with chronically terminal or terminally chronic cancer.)

In a very real sense, I am Living in an Undefined Space. I often say I am living with cancer, but cancer does not play well with others and is not a good roommate. I wrote about this in one of my very first posts, Have I survived yet? At that time, I wrote:

Living with doesn’t always mean “liking” or even “getting along”. Successfully living with a spouse or a roommate or in a family means respecting each other’s personal space, not impinging on their rights, not imposing our own will on the other one without their consent. Sometimes it means speaking up, protecting our space and our rights because the other one doesn’t respect them. I didn’t invite cancer into my life, but in it came. Cancer is not good at sharing space, does not play well with others. Okay, then. That’s a reality I have to deal with. Cancer and I are living in the same body now, so how can we do that successfully?

Over a year and a half later, I can say two things with certainty:

I am still alive. (Yay!)

I still don’t have the answer.