Cancer Brain Drain: My Life Is Still A Mess

Seven Years Later…

It’s nearly seven years to the day that I was diagnosed with breast cancer. I’m still here, still NED, as far as I know, so in that regard, seven is a lucky number. However, I’d rather hoped that by now, I would feel a lot more like my old self again. I think I’ve accepted the fact that I will never feel exactly like my old self again. I just thought I’d feel better than this.

I do feel better. I think. That’s the problem, though. I’m not sure I can tell anymore. My ability to think has changed so much, I’m not sure I can trust my self-analysis. I’ve gotten so used to adjusting (lowering) my expectations for my mental and physical stamina, pretty much on an hourly basis, that I can’t tell for sure if my stamina is really any better than it was, say, two years ago, or if my expectations have declined so much that I don’t remember what normal stamina feels like anymore.

In some ways, I wonder if I’ve gotten worse. I decided to write this post because it bothers me that I haven’t been able to write as many posts as I’d like. It’s not for lack of subject matter. I have about a dozen topics on my prospective-post list, many of them partially researched. But getting myself geared up to sit down and write them? That seems to be harder than it used to be.

The big question is why. I think I know the answer. In an article by Dr. Frances Goodhart, clinical psychologist and author of The Cancer Survivor’s Companion, she suggests that the way to deal with decreased mental and physical stamina is to employ “the “3 Ps” – prioritise, plan and pace yourself.” Believe me, I could write my own book on this subject, if I weren’t still such a train wreck. I’ve been prioritising, planning and pacing myself on an almost constant basis for the past seven years. But my priorities have had to change in the last few years. A lot.

There are four factors that have made my life with cancer’s aftermath more challenging all along, but much moreso recently. In the first place, I’m single. Therefore, I have only one income on which to live — mine. Which leads to the second factor, my demanding, draining, satisfying yet often frustrating job as a homecare physical therapist. I do not have a partner, spouse, butler, personal assistant, trust fund, living parents or anyone else who is contributing to paying the bills or maintaining my existence on a regular basis. And but for a brief, insane few months right after I returned to work when acute treatment was done, I haven’t been able to work full time for over six years now. So, that’s factor number three — living on one fifth less income than I used to. The last factor is that I own a house. It’s a small house, with a small yard, but it still requires upkeep. We won’t even mention the car.

For a long time, I didn’t really have the wherewithal to deal with factor number four in any consistent way. Just crawling to work each day, helping solve other people’s health problems, and then crawling home was about all I could manage. For most of the past six years, I had to take neurostimulants to get through each work day, otherwise I was exhausted by mid-morning. When I got home, I could just about feed the pets and myself, make sure I had something clean to wear to work the next day, and crawl into bed. I’d sleep for ten to twelve hours, then do it all over again the next day. If I hadn’t set up automatic bill payment online, most of my bills would probably not have gotten paid on time. If I weren’t a physical therapist, and therefore spent my work days exercising and walking with my patients, and schlepping through parking lots with my heavy work bag, and climbing stairs in apartment buildings, I probably wouldn’t have gotten much exercise either. On my days off, sometimes I was able to channel my frustration, my need for answers, my outrage at pinksploitation, and my sense of the absurd viscissitudes of breast cancer into blog posts. I felt a lot of frustration and outrage. I wrote a lot of snarky blog posts. Meanwhile, my sweet, innocent, neglected little house looked more and more like a trash pit.

And then I got frustrated with the mess. And my job got harder, because working in healthcare has gotten harder. Ergo, I had to shift my priorities. Ergo, more of my limited energy got spent on shoveling out the trash pit, and on trying to sharpen my ailing mental abilities for my job and my patients. And consequently, I had a lot less energy left over to channel my ongoing outrage about breast cancer and turn it into blog posts. Snark needs pep, and my pep was pooped.

Some of my blog pals have been writing posts this past week describing ’15 Random Things About Myself.’ I’ve enjoyed reading them. Trouble is, it takes most of my effort these days to remember fifteen non-random things about myself. I remember my name and address. I still have to think about my phone number sometimes, because it’s not one of those nifty numeric patterns that makes it easy to recall. I remember how to drive, and with a little planning, how to get to my patients’ homes. Mostly, I remember how to do my job. I’m still learning how to deal with being a homeowner. Last winter’s ungodly record-breaking snowfall here taught me things I never knew about homeownership, the consequences of which I am still tackling. I am constantly worried about money and the personal inadequacy thereof. I also make a concerted effort to remember my friends and all the bat excrement they are dealing with. That’s about all I can handle.

Since the beginning of this year, pursuant to shoveling out the trash pit that is my house, I estimated that I must have shredded or otherwise disposed of about 400 or so cubic feet of old paper records and junk mail. A lot of this was shoved into bags or boxes that occupied every room in my house except the bathroom. It was thus arranged because I haven’t been able to cope with it until this year. Most of it was in the room I use as my art studio. However, I had to get it out of the way because I have to have my home insulation upgraded. And in order for the crew to do this, they have to be able to walk from room to room. With ladders and tools and rolls of insulation. And they have to be able to get into the attic. And I have two attics, one over the main house, and one over the converted garage that is my art studio. Oh, and they also have to get at the foundation sills in the basement. So, this entire project was no mean feat. And that was only one part of it, because it also meant that I had to clean out my drawers and closets to get rid of the clothes that I don’t wear anymore, that were hanging on door hooks or folded up or bagged in various parts of the house, because they didn’t fit into my limited closet space. I’ve made a lot of progress. I’m also not done, but I’m about done enough to arrange for the crew to start. I cannot even begin to describe how much mental and physical exertion this has entailed. I find I can last for about 45 minutes before I have to stop and lie down again. Sometimes, I can manage about three or four of these sessions in a day. Sometimes, I can’t manage any at all.

My hope is that, by the beginning of this winter, I will have a much tidier and better-insulated house, with a lot less stuff in it. Then, maybe I can spend less time dealing with it and more time writing and drawing and channelling snark into this blog. I’ll let you know how it goes. Life is complicated. I need a nap.

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Nurse Navigators for Cancer Patients: Do They Help?

When I was diagnosed with breast cancer in 2008, I felt like I was stepping down an indifferently-lit staircase into the Vast Unknown. At the time, the notion of nurse navigators was relatively new in my locale, and there were as yet none available. I could have used one. There was a dedicated breast health center, where clinicians from all the area hospitals who treated breast cancer could see their patients, along with a multi-hospital weekly tumor board where they could discuss treatment plans. Thus, my breast cancer surgeon, my radiation oncologist and my medical oncologist each worked for different hospitals, but I could see them in the same area and coordinate communication with them through the breast health center. Theoretically, that is. In practice, things didn’t work out that way. Instead, as I struggled to make treatment decisions, I also struggled with poor access, poor communication, poor coordination, and incomplete information. If I’d had a nurse navigator, she might have smoothed some of the bumps.

Now, as a homecare physical therapist with a specialty in oncology rehab, I deal with oncology nurses and nurse navigators regularly, from various cancer treatment centers. And they do help, especially when I or my patient just doesn’t know who the heck to call about a particular issue. But the road to coordinated cancer care is still bumpy for many patients.

When I began doing some research for this post, I was surprised to learn that the concept of cancer patient navigators was first conceived in 1990 by Dr. Harold Freeman and his colleagues at New York’s Harlem Hospital [Efficacy of Oncology Nurse Navigators]. And in practice, oncology nurse navigators have been around since the late 1990’s [Report on a Study on the Role of the Oncology Nurse Navigator]. Since then, defining their role has been a complex, ongoing issue, as well as defining the knowledge they need to perform their jobs. To add to the challenge, not all cancer patient navigators are specially-trained nurses, and some are not nurses or even clinicians. Some navigators are social workers, and some are lay people. As such, they may fulfill somewhat different roles in cancer care. In a study published in February, 2012 in the Journal of Health Care for the Poor and Underserved [Cancer Patient Navigators & Their Role in Cancer Care], the role of a navigator is defined as “an individual trained to help identify and resolve real and perceived barriers to care, enabling patients to adhere to care recommendations and thus improve their cancer outcomes.” These barriers may be economic, as well as lack of access to basic information about symptoms and preventative care. Thus, navigators may play a role across the spectrum, from screening to acute cancer treatment, to palliative care and survivorship care.

Recognizing this need to improve cancer care and to reduce cancer incidence and treatment disparities in the U.S. healthcare system, in 2007, the National Cancer Institute launched a pilot program [NCI Community Cancer Centers Program] in community hospital-based cancer centers to “support cancer research and enhance the quality of cancer care at the nation’s community hospitals.” Part of this program was to require cancer patient navigators. The hospitals that have taken part in this program have been studying ways to:

•Reduce cancer healthcare disparities
•Increase patient participation in clinical trials
•Improve quality of cancer care
•Enhance cancer survivorship and palliative care services
•Expand use of electronic health records and connect to cancer research data networks
•Promote collection of high-quality biospecimens to support genomically-informed research (also known as personalized medicine) [quoted from the previous link]

In 2014, this program was replaced with the NCI Community Oncology Research Program in order to “conduct multi-site cancer clinical trials and studies in diverse populations in community-based healthcare systems across the United States and Puerto Rico” in order to allow “access to a larger and more diverse patient population in a variety of ‘real world’ healthcare locations.” Meanwhile, cancer patient navigation continues, as well as efforts to refine the definition of the navigator’s role and the knowledge base needed by oncology nurse navigators in order to perform their jobs.

So, what do they do? Here’s a summary from Cancer Patient Navigators & Their Role in Cancer Care:

In my clinical experience with navigators, particularly nurse navigators, what they generally do when one of my patients has been diagnosed with cancer is to accompany them to each doctor visit, to help fill in the blanks about their treatment options and the potential risk vs. benefit of each option, to provide emotional support and facilitate practical support, to help coordinate care, and to serve as a go-to person when problems arise. In particular, I think one of most meaningful roles they can play is to help ensure that patients understand their treatment options and understands their efficacy and potential harms. I say this because I find that it is still too often the case that cancer physicians themselves either do not have the time to explain everything and answer all questions, or that they present only one treatment recommendation and do not inform the patient that there may be others. Patients are usually and understandably so overwhelmed and shocked by the reality of their diagnosis, they don’t even realize sometimes that they have a right to ask questions. Many patients are intimidated by questioning their doctors at all and may not feel brave enough to disagree with them or insist that their doctors address quality of life issues. A nurse navigator can really make a difference in such situations, so that the patient can arrive at treatment decisions that are truly informed.

Not all oncologists are alike, nor are navigators. Recently, I came across an article [You Have Nothing to Lose] by Lee Newcomer, who runs a cancer care center, about how an oncologist recommended treatment to a friend’s wife that did not reflect complete and current evidence-based information about this woman’s particular breast cancer. It underscored how important it is to have a thorough and honest discussion about risks versus benefits of treatment, and of the need to get a second opinion. We all want to be able to trust our doctors, but we also want the best treatment for us as individuals, with a full consideration of the impact of treatment on our lives. I could write another post entirely about recommended best practices for oncologists.

Also recently, I discovered that two of the navigators I deal with, who work in the same cancer center, see their roles differently. One of them tends to stick to the party line, as it were, explaining the side effects and efficacy of the particular treatment an oncologist recommends, but not offering information about other options that the oncologist may not have mentioned. The other is much more likely to encourage a patient to get a second opinion, to outline other options, and to emphasize that the patient has the right to disagree, question and be fully informed before making any decisions. It can be uncomfortable for nurse navigators to know that a certain oncologist, with whom they must regularly interact, may not be disclosing all the information a given patient needs for informed consent. It’s important for all navigators to have a consistent understanding of their role, as well as the support and education they themselves need to fulfill that role.

Another incident occurred recently when a patient attended her first chemo infusion. Her chemo nurse found that this patient had only a rudimentary understanding of the potential side effects of each of the drugs in her chemo cocktail, and immediately called a pharmacist to the scene to help her explain them to this patient and to the family member who accompanied her. This patient had a navigator, but somehow did not understand what she needed to deal with the treatment she was about to undergo. There can be a lot of reasons for this. As many of you know, it’s extraordinarily difficult to obtain and understand all the information you might need to make treatment decisions, and to understand all the ramifications of those decisions. It often feels like we are required to take, in effect, a crash course in clinical oncology in order to understand what is going on. Not every patient is equal to such a task, nor are her family members. Many patients still prefer to just leave all the decisions up to their doctors and endure the consequences.

In the meantime, researchers continue to study the efficacy of oncology nurse navigators, sometimes struggling to come up with parameters that truly reflect the value of the role they may play in cancer care. One such study reviewed the current research on this subject [Efficacy of Oncology Nurse Navigators]. Looking at 18 studies, it organized data by “rationale for implementation of nurse as navigator, study patient populations, navigator educational preparation, and measurable patient outcomes such as the time to diagnosis and treatment, effect on mood states, satisfaction, support, continuity of care, and cost.” Among other things, it outlined the difficulty of measuring navigator effectiveness in terms of cost of care, but also found that “nurse interaction with patients and families to mutually identify unmet needs; inform, teach, and support; and coordinate and promote the continuity of care” represent a valuable service that can improve patients’ experience of treatment and its outcomes.

I hope those of you who have had a patient navigator will comment and share your experience, and that those of you who did not have one will share how a navigator might have improved your experience. Personally, I think we need all the help we can get.

All the links mentioned in this article, plus some resources, are listed below.

Academy of Oncology Nurse & Patient Navigators

Cancer Patient Navigators & Their Role in Cancer Care

Delineating the role of the Oncology Nurse Navigator

Efficacy of Oncology Nurse Navigators

NCI Community Cancer Centers Program

NCI Community Oncology Research Program

National Comprehensive Cancer Network Patient Guidelines by Cancer Type

Report on a Study on the Role of the Oncology Nurse Navigator

You Have Nothing to Lose

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Nineteen Seventy-Three: A Memory

It’s Memorial Day weekend, and I was thinking about all the veterans I’ve known over the years, starting with my dad, who was probably the first veteran I knew personally. Eventually, I came to remember one named Kevin. And started writing this. Wherever you are now, Kev, all these decades later, I hope you’re okay.


Make love, not war
was what everyone said
back then, becoming, when we met,
our private joke, our secret portent,
you, in fact, a big man on campus,
six foot five in sneakers,
me, six foot two in platform shoes,
Was it only that
it was easy for us
to see each other
above the crowd?
I used to joke
that I was drawn to you
because you were ‘an older man,’
not by much, but still,
twenty-four was ‘old’
for a sophomore.
Hah, you’d say,
only decent thing they did
since they signed you up
for the Marines,
sent you to ‘Nam,
scrambled your brains,
and discharged you, honorably,
least they could do
was pay for college
so you could try
to fill your head
with something else.

And so we made
love not war,
time and again,
you like a blanket
over me, muscle, sinew, skin,
to Pink Floyd’s latest album,
over and over,
those apt lyrics,
those soaring vocals
matching our urgent
heartbeats, our quickened breath
wave for wave, until we crashed
into climax, your body melting
onto mine, when suddenly,
your psyche —
triggered perhaps by heat,
our tropical explosion —
would steal away,
your head,
filled again
with dark forebodings,
and I would be alone
with your body, now empty
as a spent mortar shell,
while the music played
‘I’ll see you on the dark side
of the moon.’

We didn’t have
a name for it then.
Shell shock
was the old name from
the war to end all wars.
You never told me
where you went
but I guessed
the general locale if not
the wretched details. I didn’t want
to think too much
about why
it was our coupling
that sent you off,
too frightened
to wonder why
making love
reminded you
of making war. I just
hung onto you
as if your life depended on it,
waiting for the moment
you’d return, relieved
that you did
return, wordlessly,
your mouth against my neck,
refusing to whisper,
silent as the smoke
rising from a field of ashes.

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Missing At Birth

When I was seven years old, my mother decided to impart some previously undisclosed details about my birth. I’d already heard, many times, along with several relatives, how much I’d weighed, that I was a happy baby, that I’d slept well, that I was the first grandchild on my father’s side of the family. Birth itself was still something of a mystery to me. I knew that babies grew in their mothers’ bellies, but I wasn’t sure how they emerged from them. My friend Suzie’s big sister had recently informed us that giving birth was sort of like peeing, except it hurt more and took a lot longer. I didn’t think any further information was necessary.

I also already knew that my parents had been married for three years when I arrived. By the time I was seven, they’d been married for ten years. My mother once told me that she’d had a number of miscarriages before I was born. She didn’t say if she’d had any after. She never told me what a miscarriage was, but I figured out it was some kind of unexpected, physical cancellation of pregnancy. She’d also told me several times that she’d always wanted to have more children after me. “It’s your father’s fault I haven’t had them,” she’d said. “He hasn’t been — romantic enough.” Once, when she was in one of her states, she told me it was my fault she hadn’t had them. But that happened later, when I was a little older.

Whatever the cause, the consequence of all this was that my parents had no other children. This did not seem advantageous to me. Being an ‘only’ put me under too much pressure. It was, however, nice to have a spring birthday. Easter was always near my birthday. For my seventh birthday, I’d gotten a very large Easter basket and an orange kitten. I’d named him Sweetpea. He liked sleeping on the paper grass in my Easter basket. He was also not averse to letting me wheel him around in my doll carriage.

Since my birthday, my mother had been fond of pointing out that, at seven years old, I had attained the Age of Reason. Whatever that meant. Just an excuse, I thought, for telling me more things I really didn’t want to know. I believed that there were just some things that mothers should not tell their children, whatever their age. It was okay for Suzie’s big sister to tell us a few home truths. She was one of us, after all. But mothers, I thought, should just keep some things to themselves. Normal mothers did, I was certain. But my mother was not a normal mother.

Sweetpea was asleep in my doll carriage when my mother announced, in mythic tones, that she had A Few Things to tell me. Sometime in the hours after I was born, she said, her doctor had told her that he believed I’d had a twin who didn’t make it. Something about the afterbirth, he said. It had not been, he thought, an identical twin.

I was stunned. I wondered how the doctor might have figured that out. In those days, they didn’t have ultrasound machines to determine prenatal womb occupancy. What was the something about the afterbirth, I wondered. Was there a tiny dead body in it? My mother didn’t say, and I didn’t ask. She also didn’t say what an afterbirth was exactly. She did tell me now that, missing twin aside, after all those previous miscarriages, she was just relieved I’d made it with all my working parts intact. I wondered if all those miscarriages had involved tiny dead bodies. Still, I felt somewhat reassured. I was afraid she might have been disappointed that she’d only ended up with me, and not with both of us. It seemed a little cruel to me to end up, say, with chocolate ice cream, only to find out you were meant to have both chocolate and strawberry, but that the strawberry had been cancelled at the last minute.

She admitted that she was unconscious during the crucial part of the proceedings. “Knocked out,” was how she put it. Once again, she mentioned that I’d weighed nine pounds, seven ounces. Before, I’d thought my higher-than-average birth weight was a point of pride, like an athletic achievement. Now, I wondered if I should feel guilty about it. Then she said that, despite my birth weight, she hadn’t had to have a C-section, which, I gathered, was some kind of surgical procedure conducted to remove extra-large babies. The reason she hadn’t needed one was amusing, she explained. When the nurse first placed me in her arms, she thought perhaps they’d made a mistake and given her someone else’s baby — not her newborn girl, but some one or two-month-old who was visiting the maternity ward. I weighed a lot, she said, but I was also twenty-three-and-a-half inches long. She sat back, grinned at me, and folded her hands. I stared at her, not grinning, and hoped there was a punchline.”Don’t you see?” she said. “You were so long and skinny, you just slid right out!” Sometime after I was considerate enough to just slide right out, that ominously suggestive afterbirth followed me.

Certainly, I was relieved that I hadn’t forced my mother to have a C-section. But why she was telling me all this? What was the point? How was I supposed to react to such information? I couldn’t tell. I also knew that my reaction was not uppermost in her mind. It never was. She just had to get this off her chest. Again, I wondered why she chose to unburden herself to me, and not to some grownup. Was there a subtext? Perhaps it was because I had evidently continued to be a rather considerate child. I was a good listener. I didn’t ask a lot of difficult questions. Perhaps it was because I was just there. Whatever her reasons, for now, her story was done, and, as usual, I was left to ponder it unaided.

I wheeled Sweetpea into my room and shut the door. I began to wonder about my missing twin. I imagined it was a brother. It could have been a girl, a non-identical sister. But I was sure it was a brother. I wanted it to be a brother. How was I supposed to feel about the fact that he hadn’t survived? Did that make me a murderer? Had I committed infanticide in my mother’s womb? Had I somehow robbed him of nutrition, elbowed him out of the way, and gobbled it all up for myself? Is that why I weighed so much at birth? Why didn’t he defend himself? Was it just the size difference? Was my zygotic self always bigger than his? Did I accidentally or deliberately kick him to death with my long, skinny legs? Did we get tangled in a sibling embrace that choked the breath out of him? Or, due to my overwhelming volume, did I just smother him to death?

Or was it even my fault at all? Was it possible for a woman like my mother to have a sort of partial miscarriage? Did my mother’s body decide, by some mysterious process, that it could only handle bringing one baby at a time into the world? Was I the product of some Darwinian, survival-of-the-fittest contest over which I had no control? Wow.

My options appeared to be that (a) I was a murderer, (b) I was a clumsy, unwittingly dangerous oaf, (c) I was too competitive, and (d) I won some contest I didn’t know I was participating in. Ultimately, I couldn’t decide which one applied. And it almost didn’t matter. Whatever happened to him, I felt bereft.

I wondered what life would have been like with a twin brother. Would my mother have divulged so much unsavory information to both of us, or to just one of us? Or to each of us one at a time? We could have at least compared notes afterward. It would have been helpful to have someone with whom to discuss the states my mother sometimes got herself into. Like the times she was convinced that the neighbors, or my father’s fellow ushers at church, or the women of the neighborhood coffee klatch, were all conspiring against her.

I wondered what my brother would have looked like. Would he have dark blond hair and blue eyes like me? Or brown hair like my mother? Or hazel eyes like my dad? Would our parents have liked one of us more than the other? Would my dad have recruited my brother, and not me, to help him develop photos in his darkroom? Or would he have put us both to work, hanging negatives and uncurling prints off the photo dryer? Would I have been spared the boredom of having to hand my father various tools while he tinkered with the car? Would I have gotten a kitten for my birthday? Would we both have gotten kittens?

Would we have the same friends? Would the boy next door, who’d kissed me on the cheek one day in his back yard and then run away, have been my brother’s friend instead of my first romantic interest? Would my brother have slugged him for kissing his sister? Would my brother and I be on the same side in our epic neighborhood snowball fights? Would we even like each other?

Of course we would, I decided. We were twins, after all. Maybe he would play with trucks while I played with dolls, but we could still play games and build forts and do puzzles together. We could push each other on the swings. We could still be allies when our parents had one of their screaming matches over dinner, ducking our heads together when they threw dishes at each other. I wouldn’t have to run, alone, to my room to cry afterward. I wouldn’t be an ‘only.’ All the pressure wouldn’t be on me.

It was really too bad that he didn’t make it. I missed him. A lot.

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