Thankful, but heartbroken

I was very lucky again this week with my scans. Last night, I celebrated Thanksgiving with my extended family, positively basking in the love.

As Thanksgiving approached, and I had my November scans, I missed Phlebotomist B, my favorite phlebotomist of all at the cancer center. I hadn’t seen him all year, and I especially thought of him because I had remembered a chat we had about Thanksgiving the year I had colitis and then magically recovered in time for the holiday.

With some time to kill after my scan results, I decided to see whether I could find out where he had gone. I remembered his first name, and I knew where he had worked. I didn’t search very long, but I was not prepared for what I found.

A tragedy on all counts. A distinctly American tragedy. The heart breaks.

It may be hard to understand how hard this hit me. This was a person who drew my blood, after all — seemingly a bit player in my medical drama. It doesn’t feel that way to me. 

Bakary (as he introduced himself when we first met) was my first point of contact on every visit to the cancer center, in the tiny curtained cubicle where he spent his work day. He expressed concern when I was ill, and relief when he saw me get better. He worried when I cried in the chair, which was only when I let my brain get the better of me — because Bakary was so good at what he did, his sticks never, ever hurt.

And because he showed so much concern for me, I cared about him as well. I never knew about his family, the six children he left behind. But I did hear about his life here, which was testimony to the classic pattern of the life of an immigrant to the United States — the tireless striving for a better life, for better opportunities, for safety and security. 

The violent end of his life was unscripted, unfair, and unthinkable. It leaves another massive tear in the fabric of the society I want to believe I live in.

And my heart breaks anew when I think about the team in Dr. P’s office bearing this awful news silently amongst themselves, not being able to tell their patients, because their patients are dealing with cancer and could not be expected to handle this kind of news.

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High pass

A phone charging spot with a view

I’ve done it again — passed my scans with flying colors (even though a pneumonia was still visible on the CT images, alarming Dr. P, who wasn’t sure I knew about it! Oh, I knew). My next MRI is in three months, but the CT scan is not for another SIX. Wahoo!

Since these scans were a referendum on whether it is a good idea for me to drop the frequency of my medications to every other day, I was especially anxious about these results. Also, I am now two years out from my last gamma knife surgery, meaning I’m two years out from any sort of tumor activity. It feels good to have two years of life under my belt… even if that life is fraught with anxiety. It’s still better than the alternative.

I asked Nurse Practitioner Rajni today about the modified meds schedule, because it is not something that is officially sanctioned by the drug company or the FDA or any other official entity. It turns out that they do case studies in order to figure out what makes sense, and also share data at conferences, etc. They do this because the BRAF drugs are still too new for there to have been any studies done on modified dosages. She said that after a year on the meds every other day, they might change it again, to three times a week, or whatever seems prudent. I remind myself that in the past, when I’ve had side effects, I have gone off the meds completely for two weeks, with no bad result. (The half-life of these meds in the body is seven days.)

I’m grateful this treatment keeps working for me, and that the new dosage seems to be working fine. Having a vacation from the meds every other day really helps lift the siege mentality that can develop when you take a medication that requires you to fast for three hours twice a day. 

Speaking of siege mentality, because I am always looking to put things in perspective, and because I have a perverse idea of what to do with a little leisure time, I left the cancer center and headed for a screening of a documentary called “Fear Us Women.” (Looking at the website, I now see I could have watched it for free online, saving a few bucks, but I had some popcorn, and the entire theater to myself, so there you go.) 

It is about the YPJ, an all female, mostly Kurdish army that fights ISIS. The main subject is a non-Kurdish Canadian woman, who heard about ISIS and decides to leave home and join up. She’s on the older end of the scale — most of the women are much younger, many traumatized by what ISIS has done to their communities and in seek of revenge. ISIS fighters believe that if they are killed by women, they do not go to Heaven, which makes the YPJ’s activities doubly important. In one scene, they send a barrage of rocket-propelled grenades over to the enemy, and then ululate so their foe will know exactly who it is that is doing the killing — women. 

I am inspired and in awe of these women. They do incredibly dangerous and vitally important work for the entire world. There are many good reasons I can’t run off and join the YPJ… but knowing they exist makes me proud of women. For this and many other reasons, it finally feels like a good time to be a woman. I’m grateful to still be around to witness it.

Happy 13

Today, thirteen years ago, J and I were married. To say that it has been a wild ride is an understatement. What did we know then? Not much. What do we know now? Just a little bit more. And we’ve unleashed two splendid humans on the world in that span of time. (One of them, at not yet eleven years old, is as tall as some adults.)

J, I would be nowhere without you. Our family would be nowhere without you. If it takes another thirteen years for me to figure out how to express how essential you are to me… then I hope I have every bit of those thirteen years left to do it. I’ll need them.

Pneumonia bites

Early pneumonia, by Yale Rosen on Flickr, licensed under Creative Commons

My primary doctor wasn’t going to be available from 9 p.m. last night through 9 p.m. tonight. I put two and two together and realized she would be running the New York City marathon today. Way to go, Dr. S!

Luckily, I called her earlier in the day yesterday, with enough time for her to write a prescription for a chest x-ray and send a copy over to the closest imaging place. By noon, I’d held my breath for two views and was out the door, on my (very slow) way to a bowl of chicken curry pho and then home to crawl into bed. J and the boys lived their lives without me yesterday and are doing so today. (Poor J. The school/work week can’t start soon enough.)

By 3 p.m., Dr. S had heard the news: I have pneumonia. I took a very slow walk to the pharmacy, where I picked up my antibiotic, and a Crunch bar (there was a distinct lack of those in the Halloween haul this year).

By the way, I made sure the kids understood that this is a serious but common ailment which I have survived before, and which is wholly unrelated to cancer. I figured I owed them at least that much, since I’m visibly sick.

I was really out of it all afternoon. I managed to make and drink tea, but not much else. When J and the boys finally got home, I weakly requested a bowl of soup. 

It was not until a few hours later that I remembered to check my temperature. It was pretty high. This lack of basic self-care stands in stark contrast to the type of mother and wife I am, in similar situations not involving me. I took my temperature the day before, but yesterday I was apparently too sick to remember to.

J and Young J had a bat mitzvah party to attend, which left me in charge of Young A at bedtime. Bedtime is typically when Young A goes wild, releasing his last stores of energy before sleep. Last night, he was cooperative, quiet, and subdued. I was still contagious and didn’t want to read to him, so he read to me. He’s a wonderful, expressive reader, every bit as good as his older brother. (This week, we got wonderful reports from their teachers about their writing skills. Color me not at all surprised, but very, very proud.) We wished each other a good sleep, and he drifted right off without his usual shenanigans. Something to do, perhaps, with his usual bunk bed co-conspirator being out.

I have a lot of time on my hands, all of a sudden. Little or no energy yet for all the aspirational activities like reading (books are heavy, my eyes are tired) and writing (ideas in short supply, although I did just sign up for a poem-a-day in November challenge). 

What I’m doing is trying to reconstruct a timeline of my past pneumonias. There may have been one or two when I was a child in school. (Certainly there was a lot of bronchitis.) 

I.

Late 1992 or early 1993. My senior year of college, in the middle of a particularly busy semester, it struck again, hard. Fever of 103. Delirium. Luckily I was in school close enough to be able to come back home for a week. I packed exactly one book for the week, an insanely scholarly and heavily annotated edition of Hamlet. It just so happened that in all six of the courses I was taking, across the English, French, and Italian departments, we were talking about Hamlet in every single class, for different reasons.

I sunk back into my childhood bed for a week, sweating through the fever and with coughs wracking my lungs, and read Hamlet. Every word. Every note. Every punctuation mark. I steeped myself in the book, like a teabag in a cup.

By the time I got back to class, I was the world’s foremost authority on the play. I probably knew things about it that The Bard himself did not. In my Literary Theory class, we began our discussion of Hamlet. My hand kept popping up as though it were a Jack-in-the-box. I had many, many things to interject, to add, to expand upon. Finally, the professor narrowed his eyes and said, “Excuse me, but which edition did you read?”

II.

October 2008. Young J was nearly two years old and I had been his primary caregiver for almost a year, after leaving the career track to spend more time with him. You can imagine I wasn’t taking very good care of myself, because when was there time for that?

I’d had a sore throat for a few days. I drank tea and kept wishing it away. My friend W and I embarked on a craft project, freezer paper stenciling pictures onto t-shirts. I laboriously cut out a detailed tractor trailer stencil for Young J’s shirt, and a brontosaurus (or whatever-saurus it’s known as now) for J’s t-shirt. We painted them. They had to be laundered in a certain way, so W took the shirts and washed them for us. 

I remember the evening she came by to drop them off. It was right around this time of year. Not sure if Halloween was coming or had gone. But I happened to be making chicken soup for my sore throat and started feeling faint. When W rang the bell, it was all I could do to get down the stairs to answer the door. In retrospect, it’s a wonder I didn’t collapse.

J got home from work, and I got in bed. When I eventually checked my temperature it was exceedingly high, like 103. Young J had to be put to bed, and then we had a friend or neighbor come while we went to the ER. I remember very little except lying there and learning my fate. And learning that I’d need to follow up with a doctor. And realizing that I didn’t actually have one.

That is when Dr. S came into my life. I was lucky — unlike today, when she cannot see new patients for months, she was able to see me right away. Although I had already started antibiotics, I had a nagging problem — the strength of the coughing I was doing caused me to vomit every time. 

In the gentlest, lowest pressure way imaginable, she scribbled down something on her prescription pad. A homeopathic remedy, ipecacuanha. I should get it, she said, and dissolve five pellets under my tongue a few times a day. She wasn’t promising it would definitely work. It was on the order of a very informed suggestion.

Being a lifelong fan of Alice’s Adventures in Wonderland, I went ahead and bought some, marveling that this item could be bought at my corner drugstore. 

And it worked.

(Dr. S also told me to get plenty of rest and sleep. But that doesn’t come in pellet form.)

III.

May(ish) 2010. I don’t know much about this one. Except by this time I had a three year old and a three month old. So naturally I was excelling at self-care and getting plenty of rest!

IV.

January 2012. This one really hurt, because we’d finally gotten out of the weeds of the newborn stage, and made plans to take a trip away from the kids. A real trip, on an airplane, to Puerto Rico, to mark my having hit 40. A few weeks before the trip, the sentence was handed down to me yet again. I was okay to travel, but our planned hikes and adventures were downgraded to mostly just driving around.

V.

November 2017. I have gone nearly six years now without pneumonia. Why did it have to come back now?! Perhaps my body sensed the lack of grave health concerns currently, and wanted to take advantage. 

On the other hand, this time off from pneumonia has given my children time to grow, time to become more self-sufficient and they can even contribute to the general good of the household. (J is out grocery shopping with them. May God help him.) So my recovery has already been given a huge boost in terms of all the things I do not have to do/be/worry about. Self-employment is also a plus at a time like this.

One of the past pneumonias came on after I’d given up sugar for a month. I had mentioned this to Dr. S at the time, and her reply caught me off guard: “Maybe you need sugar,” she said.

Well, I’ve been avoiding most sugar now since mid-September. I think I’m done with that now. Just in case.

——————————–

There you have it: my history of pneumonia in five uneasy pieces. 

I have never once stopped to consider how dealing with this recurrent health condition might have contributed to my mental attitude in dealing with a much graver one. In terms of similarities, it too seems to pop up at any old time — just like the melanoma I’ve been (so far) beating back with a stick. In terms of differences, it has taught me to appreciate conventional illness, which is symptomatic and viewable with an x-ray and does not require the involvement of specialists.

It’s an ominous-sounding word, pneumonia, and indeed when I told the porter of the building next door yesterday that I had it, color seemed to drain from his face, as though I’d just told him I had, I dunno, cancer. (In his experience, I’m guessing, people can die from pneumonia. I hope he’ll be happy to see me out and about again soon.)

(Dr. S at the moment is over 23 miles in to her marathon, with my friend T, a first-time marathoner, not far behind her. Tracking their progress from bed today has been a transcendent activity.)

Mercury

TTT #5, by Palo on Flickr, licensed under Creative Commons

This whole week, it has been a struggle to get up in the morning. Even for our normally early-rising kids. J and I blearily open our eyes at 7, but don’t seem to be able to get out of bed for another half-hour after that. Today, though, I woke up and started coughing. A tubercular, junky cough, not unlike truck exhaust. J was alarmed. I tried to play it off. (A poppy seed bagel at breakfast, by the way, is not the best choice when you already have junk in your throat. Also, I should have skipped the cappuccino.)

I had a couple of things to do this morning. Move the car for street cleaning (the price of having a car in NYC) and then head to the kids’ school to give a talk on how to do research for the fourth grade class. It is a wonderful school, but they lack a librarian, so I am occasionally called in to pinch hit. Today I got to use my favorite topic as an example, explorers, because the students are starting a research project on the topic, and because there is a fantastic spoof website expressly designed to trip people up and teach them to question where the information is coming from. After a brief presentation in the classroom, we moved to the computer lab. I noticed I was sweating a lot, and chalked it up to a rambunctious group of kids. The computer lab felt like a sauna, as I wandered between the computers and explained the finer points of getting good information from Wikipedia, and what the Library of Congress and the Brooklyn Public Library websites might add to their research.

By the time I walked out an hour later, I felt as though I’d been at the gym. I lurched home and noticed I had the limp-limbed feeling of impending illness. I changed clothes and crawled into bed, hoping to sleep, but sure I wouldn’t be able to, because of the small matter of a scaffold that had been lowered from the roof of the building next door, which happened to be at the exact height of our bedroom window. I think the workers are repointing the brick. This involves a lot of drilling. 

I’m not sure how, but I think I slept anyway. It was cozy, if not quiet. I lay in bed thinking of the many infirm hours I spent lying there. It felt like a distinct luxury to be getting sick in this way — I mean, conventionally. Having symptoms treatable with tea, with rest.

Magic soup.

After yearning for chicken soup, I suddenly realized that the leftover chicken from taco night plus the broth it made while cooking would have me eating soup in no time at all.

Eventually, I took my temperature, and wasn’t a bit surprised to find it a shade above 100. I tend to run pretty cold, my normal body temperature closer to 97, so breaking 100 is something of an accomplishment.

Why is any of this remarkable? I suppose this entry is what prompts me to write. An entry from more than two years ago, written when I was a couple of weeks away from my next scan, and was assuming I was in good health and just home taking a sick day. A precious sick day.

I of course have no reason to believe I’m not okay now. But, as always, I have every reason to fear everything falling apart again. Cancer has gifted me a powerful sense of faith in science, but also superstition, in equal measure.

(My next scans are on the 13th.)

A ledger

Teach us to number our days, by Harley Pebley on Flickr, licensed under Creative Commons

I have the world’s most ridiculous part-time job. It’s four hours a week, I do it from home on my laptop, and the perks associated with the job are as considerable as they are random: I receive a discount on my monthly wireless phone bill. A free flu shot annually. 

This semester, I have hit the jackpot: three counseling sessions with a graduate student in nutrition. I tried signing up for this last year, and the response was overwhelming and they ran out of spaces. This time around, I made sure to respond as quickly as I do when I get the email saying it is time to sign up for parent teacher conference time slots (that is, I drop everything else I’m doing and call J and we sign up for them on the spot, as though lives hung in the balance). And I got through!

I will meet my nutrition counselor, X, three times over the semester. I met her yesterday and filled her in on my recent life. Luckily I have plenty of experience encapsulating what has happened to me, so I can do this in about fifteen minutes, if I leave out granular details and just focus on the major events and the timeline. (I feel like the ultimate luxury, for me, would be to live long enough that I eventually get to the point where I no longer remember what month and year specific key events of my cancer occurred, without a little notecard tucked in my wallet.)

I happen to know a lot about eating. I know this from my upbringing, and from observing those around me, and from having dieted both successfully and less successfully. Plus, anyone with half an eye open is aware of the myriad diets and “cleanses” and “reboots” on today’s horizon.

I also know a lot about my body, and the various changes it has undergone and is undergoing since turning forty, and since becoming dependent on certain medications in order to live — medications which are very well understood when it comes to how they stop tumor growth, but far less well understood in terms of their effects on other systems of the body. My recurrent medication-induced iritis is just one example. Amenorrhea may be another. And this weight gain I’ve experienced, since recovering from the blow of immunotherapy-induced colitis? Do we pin that on the steroids, the cancer meds, my typical stress response, pre-menopause… or a combo platter of all of these? There are other issues, too, which even I, oversharer that I am, don’t want to go into.

In order to figure out what I might be doing right or wrong, X asked me whether I’d be able to keep a food journal. The main reason I have not gone back to Weight Watchers, which I’ve found success with in the past, is because I can’t stand the thought of logging my meals. I tried the free My Fitness Pal app for a bit, but I still couldn’t bring myself to write everything down. When you’re setting up a system like this, it can take some time to input all the amounts and the foods you usually eat. Time I apparently don’t have to spare. 

I decided to try to keep a journal for X, just for a week. And I’m doing it in an old composition notebook, with a pen. I’m on Day Two, and I find that the implied scrutiny is both good and bad for me. Having to count the number of cashews I eat seems punitive. But limiting the number of them that I eat makes each one taste better. That I am keeping the journal freehand — that is, independent of a system which tells me whether I’ve made a “good” or “bad” choice — is also interesting, because it forces me to make my best guess as to what is a sensible meal. 

Because I have had friends with eating disorders, sadly, I am all too aware of how powerful a simple notebook can get. It’s a mute participant in this exercise of trying to exert control over my impulses, but it is hard not to think of the page as silently judging.

Today I suspect I have undereaten, underhydrated, and overexercised. I’m going to take a nap and see if that helps reset me. When I wake up, herbal tea. 

What am I waiting for, a freaking halo to show up above my head?! Maybe it will show up. But if it does, it will have to share space with the sword that is permanently there.

Days pass, years pass

Do the seasons have to be so obvious in their passing? At this point, at my age, it almost feels like a cliché. Except, of course, that this year the season seems to change and also not change. We switched the furnace on a couple of weeks ago. This did not bring an end to our need for the air conditioner. We are forced to inhabit this duality now.

Last weekend, I was exhausted from more than my usual share of childcare — the kids had a three-day school week because of Jewish holidays, and the same is happening this week. J took them out for most of the day, and I took myself to the botanic garden. I was on the lookout for migrating monarch butterflies, because a friend told me her backyard milkweed plant had hosted hundreds of them during the week. Not in those numbers, but I did find them.

 

I also saw these autumn crocuses, which seemed like such a good metaphor for my mental state.

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“It is exhausting to be beautiful.”

And I spent a long time reading a book recommended by a friend. It is a memoir written by a woman who decides to undertake the daily study of a page of Talmud known as daf yomi. It surprised me that I would even think of reading such a book, and I will admit that spending my time reading about someone reading seemed a strange use of my limited attention span. I have been enjoying it, though, because it juxtaposes her daily study with the events of her life. It has made me curious about the Talmud, which I never considered something that a person as un-learned as myself might ever get around to.

Also, reading about her daily practice dovetails with a need for daily rigor I’ve been trying to impose on myself. I’ve been mostly off sugar for about a month now, not eating sweets and not adding sugar to coffee and also (although not obsessively) avoiding foods with added sugar. Fruit tastes almost unbearably sweet, sometimes. One thing I have yet to kick, however, is this:

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Fingernails ARE NOT FOOD.

Nail biting was lifelong habit until I was 25 years old, when I suddenly stopped between one day and the next with no rhyme or reason to it. I probably took it up again recreationally when I got cancer. Now it seems to be back as a daily affliction, especially with all the suspenseful episodes of the original Twin Peaks series that J and I have been watching (so that we can watch the new ones).

I’ve also been concerned for a while about my use of social media and my phone. And it appears that I’m not the only one who is concerned about the pervasiveness and the addictive nature of social media and smartphones. This article sheds light on the very people who created this state of affairs now avoiding their own creations. Food for thought.

I’ve been putting this post off for a while, but I finally had to post today. Because it is the third wedding anniversary of our dear friends, Jeff and Holly. And their wedding, three years ago, was beautiful and fun and stylish and in every way a singular night. This would have been the case even had I not just started immunotherapy treatment for my lung metastases. But I had. I was euphoric about it, because I wasn’t feeling sick to my stomach, and every indication was I would be fine. And as it turns out, I am, in a manner of speaking, fine. Recalling this day three years ago means returning in my mind to a different state of being — when I didn’t know that treatment would make me ill, and that it would be suspended… but then would turn out to have worked, anyway, leaving my lungs NED since April 2015. I didn’t know that melanoma would be coming after my brain next. I could fill a ballroom with the things I didn’t know. Instead, I’ll raise a glass to Jeff and Holly and spend a little while looking at this photo of J and I from the photo booth at their wedding. A goofy one, to be sure, but I love its [mock] ferocity.

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Don’t blink.

Finally: My dear friend Tehilah is running the New York City Marathon in a few weeks, and is doing a little fundraising, because she has a loved one dealing with cancer. I’d love it if you could add a contribution to her campaign.