I really tried to grow my hair out. The new ultra curly look has been fun. Sometimes. It was definitely worth a shot. The long curly hair I had imagined was the stuff of dreams. The reality was not.
This growing out period has underscored that my pre-chemo hair of 44 years was definitely ruled by my mom’s genetics: the color, the incredible thickness, the persistent wave that new hair stylists always thought they could turn into curls. (They couldn’t.) And my post-chemo hair kicked in Dad’s genes: the color, the incredible curls, the growing out and not down.
But DAMN! This curly hair takes so much effort!
Big shout out to all my curly girls out there who have been managing their curls for their whole lives. I had not quite a year of this and had to call it. I just got tired of having to think about my hair so much. It was also exhausting to constantly be on the hunt for the right product, each of which worked for a maximum of 4 weeks, leaving me with a one-half to three-quarter-full container of goo that I no longer had any use for.
So, for your viewing pleasure, here are my pre- and post-haircut pictures from today. Thanks, as always, to my pal V for the hair cut and to my many curly haired girlfriends (and strangers, for that matter, because it turns out that curly haired folks look out for one another in this way) who offered guidance on products and pillowcases and conditioners and shared their insights and gripes about humidity and know-nothing straight-haired people.
Now that I know I can rock short hair, I’m going back to the fabulous absence of hair care I first experienced last year.
I’ve been meaning to write about this for a while, but I knew it would be a hard post to write. Today is a cool, rainy day…perfect for some quiet time and reflection.
I was also inspired to write this today because I found a box with mementos from 2011, the year of my first cancer diagnosis, the year my life changed in so many unplanned and unimaginable ways. I probably received more than 100 cards from family, friends and colleagues that year as I recovered from the onslaught of treatment for uterine leiomyosarcoma. I will never forget the sense of astonishment that so many people were thinking of me and would take time out of their days to buy a card and write beautiful, heartfelt notes to me. Sometimes those notes were very short (“Thinking of you”), sometimes quite long (“I had cancer, I know what it’s like, life sucks but you’ll get through it, etc.”). Some of them were matter of fact, some of them shared the fear of uncertainty, all of them sent love, prayers, and/or hugs. I got so many cards that I made a collage of them before going in for my big surgery (hysterectomy + temporary ileostomy) in October 2011. I knew I’d be in the hospital for a while to recover, and I wanted to be able to see that collage. I looked at it every day and kept it for several years.
I’m a packrat of the sentimental sort. I tend to hold on to cards, photos, and other mementos that are especially meaningful to me, or were at the time I received them. This means I have a variety of boxes containing these capsules of love and friendship. In short, within the context of this blog, this habit means I’ve held on to some of the cards and notes I received in the course of my journey to Cancerland (btw, see this great recent commentary about one woman’s brief journey to Cancerland). I’ve done my best to whittle this collection down to the mementos that affected me most deeply. Interestingly, the cards that made the cut came from a wide range of people in my life: some very close to me, others who were really acquaintances, but wrote something powerful.
Anyway, in my typical fashion, this is all a lead up to today’s post, which is about my family history of cancer. Within the box of 2011 cancer mementos, I found a card from my Great Aunt B. Aunt B. just died last fall at the age of 95, the last of her six siblings to slip the surly bonds of earth.
Aunt B. wrote,
“It will be a rough time for you these next many weeks. Your Aunt A. in early 1964 would travel Monday morning by bus from Beaver, Utah to Salt Lake City for her daily C. treatments, staying at a motel, then returning home to Beaver by bus after Friday’s treatment. I know you will make it fine (after all you have that [family] spirit in you) and we wish you well.”
The thought of getting cancer treatment in 1964 is horrifying. Cancer treatment in those days was generally limited to surgery and radiation. According to a 2008 history of cancer chemotherapy, “surgery and radiotherapy dominated the field of cancer therapy into the 1960s until it became clear that cure rates after ever more radical local treatments had plateaued at about 33% due to the presence of heretofore-unappreciated micrometastases.” Although chemotherapy research originated in the early 1900s (!), the field was very limited until the U.S. National Cancer Institute was established in 1955, ultimately leading to (among other things) the development of the clinical trial system we know today. More on that in a minute.
There also was a distinct lack of nuance in treatment at that time. Cancer generally wasn’t caught early, but even if it was, the prevailing wisdom was to cut out a large swath of tissue to confine the cancer. So an early stage breast cancer diagnosis, like the one I had in 2015, would have led to a radical mastectomy (the “radical” part references the removal of lymph nodes as well as breast tissue), not a lumpectomy, or “breast conserving surgery,” as lumpectomies are now called. Based on the stories I’ve heard from older breast cancer survivors, the “take it all” approached persisted for breast cancer diagnoses at least through the 1980s.
Radiation, too, was still very much an evolving tool in the 1960s. Researchers were still figuring out how patients would respond to different doses of radiation, and trying to figure out how to minimize the significant side effects of their approaches.
I don’t know any details about my Aunt A’s breast cancer or her treatment. Regardless, I’m quite sure breast cancer treatment was a hard row to hoe in 1964.
But still probably not as hard as my Aunt Georgii. I mentioned her in a previous post, when I remembered one of my favorite stories about her making her first cherry pie…out of maraschino cherries! Blech.
G’s cancer story deserves its own book (and, in part, she has one). She really went to hell and back. As much as I resist the “warrior” narrative that is pushed on cancer survivors, my Aunt G. was a fighter of the highest order.
G. was diagnosed with advanced stage 4 breast cancer in the 1980s at the age of 41. I don’t know the specific type of breast cancer, but it was incredibly aggressive. She started with the (then) typical steps for treatment: mastectomy, chemotherapy, radiation. She had multiple rounds of radiation, both external beam radiation (like I had, but probably much less focused) and brachytherapy, in which small radioactive “seeds” are actually implanted in the body for a period of time.
She also did chemotherapy. Fifteen rounds of chemotherapy, each of which was several months in duration. My mom, Aunt G’s sister, told me that G. got to the point where she could plan the timing of her reactions to the chemotherapy perfectly: after leaving treatment, her vomiting would stop for just long enough for her to get to a certain Burger King. She would pull over in their parking lot and vomit for about 15 minutes, then get back on the road to get home.
But none of these treatments worked, which led her to trying experimental treatments such as hyperthermia (application of extreme heat to kill cancer cells) and cryotherapy (application of extreme cold). Finally, in a last-ditch effort, she agreed to serve in a clinical trial for a treatment called high-dose chemotherapy and bone marrow transplant (HDC/BMT). Georgii was among the early trial groups for this risky and controversial treatment.
The idea behind HDC/BMT was well described by Siddhartha Mukherjee in his book, The Emperor of All Maladies:
“…a procedure known as autologous bone marrow transplant, or ABMT,…roared into national and international prominence in the mid-1980s. ABMT was based on an audacious conjecture. Ever since high-dose, multi drug regiments had succeeded in curing acute leukemia and Hodgkin’s disease in the 1960s, chemotherapists had wondered whether solid tumors, such as breast or lung cancer, had remained recalcitrant to chemotherapeutic obliteration simply because the bludgeon of drugs used was not powerful enough. What if, some fantasized, one could tip the human body even closer to the brink of death with even higher doses of cytotoxic drugs? Might it be dragged back from that near-lethal brink, leaving cancer behind? What if one could double, or even quadruple, the dosage of drugs?
The dose limit of a drug is set by its toxicity to normal cells. For most chemotherapy drugs, that dose limit rested principally on a single organ — the bone marrow, whose whirring cellular mill…was so exquisitely sensitive to most drugs that patients administered drugs to kill cancer were left with no normal blood-forming cells. For a while, then, it was the bone marrow’s sensitivity to [chemotherapy] drugs that had defined the outer horizon of chemotherapeutic dosage. The bone marrow represented the frontier of toxicity…”
In autologous bone marrow transplants, “the patient’s own marrow was harvested, frozen, and transplanted back into…her body. The principal purpose was not to replace diseased marrow…but to maximize chemotherapy dosage. A patient’s own marrow, containing blood-forming cells, was harvested and frozen. Then blisteringly high levels of drugs were administered to kill cancer. The frozen marrow was thawed and implanted. Since the frozen marrow cells were spared the brunt of chemotherapy, transplantation allowed doctors, theoretically at least, to push doses of chemo to their ultimate end.”
As you might imagine, this process wreaked havoc on the patients. It wreaked havoc on my Aunt G. She was in strict isolation for 9 weeks then stepped down gradually. At the HDC/BMT treatment mid-point she asked to go home but she couldn’t, because she would have died quickly out of the unit. She literally had zero immune system.
Ultimately, after some ten years of trials, researchers confirmed that outcomes were no better with HDC/BMT than with conventional approaches to chemotherapy. And unlike the conventional approaches, the treatment itself was more likely to kill you. Treatment-related mortality from HDC/BMT was 3-15%.
I was in high school when Aunt G. was going through this process, and while I knew she had breast cancer and knew she was getting treatment at Duke, I had no appreciation or understanding of what was really happening. Last year, when we found out about my liver metastases, my mom told me this story in detail. Mom said that G’s suffering was indescribable during the last 8.5 months of her life. In spite of that, G. said she would have done it again because…who knows? Maybe she could have been one of the (few) people this horrific treatment helped.
We stand on the shoulders of giants in so many ways in this world. When you find yourself consumed by a life-threatening disease, or even a chronic illness, it is easy to fall into the habit of identifying the medical professionals as the giants. It’s important to remember that there are countless patients who literally gave their lives to medical science to get us to where we are today. My Aunt Georgii was one of them, and I could not be more proud or more grateful.
Because it’s been, what, a whole month since I posted about my hair?
Just thought you should know that I have some serious hair at this point. That shit has grown back with a curly vengeance.
And those curls have a name, dear reader: chemo curls.
It’s common knowledge that many people grow curly hair after chemo. A Google search of the term brings up 178,000 results. But I could never have imagined just how curly my hair would become. After all these years, I have real empathy for my curly-haired friends’ endless search for the right product.
It’s heartening, I suppose, to see that many other people struggle to figure out what to do with their chemo curls, too. There are gobs of online forums about chemo curls, and even a good number of YouTube videos offering coaching on how to manage your Shirley Temple look. Even though I’m not a big fan of her technique, this video is one of my favorites, because the woman is delightfully, straightfacedly self-deprecating throughout. Solid cancer humor. This one offers a Millennial’s perspective on the whole ordeal. Also funny, but in a different way. And holy cow, does she ever have A LOT of ideas for how to manage her chemo curls. That’s the benefit of being in your early 20s, I guess: a greater willingness to spend time making yourself look beautiful. I’d prefer to complain.
My hair has always been wavy, but not curly, in spite of the best –and repeated–attempts of every hairdresser I’ve ever had to “bring out my curls.”
Now, those of you who’ve known me most of my life might chuckle at my insistence on this point, since you may recall my spiral perms in the ’80s. Those hairs were pretty darn curly. But only by way of plenty of stinky chemicals and hours with my hair in a plastic bag.
No, I inherited my mom’s thick, wavy dark brown hair, rather than my dad’s (also thick) curly, black hair.
Chemotherapy seems to have kicked in the paternal genes. In addition to some intensely curly hair, it’s now decidedly salt and pepper, just like Dad’s was for many years. Still, in spite of any genetic predispositions, it’s safe to say that this change is driven mostly by the chemo. This time it was the bags of chemicals injected into my veins that did it, instead of the bottles of chemicals squeezed on top of my head.
The thing that amazes me about chemo curls is that scientists don’t understand the underlying physiology that makes this happen.
I can see why the biochemistry of chemo curls would be low on the totem pole of cancer research. But I’m so curious! Here’s an interesting read by another person who tried to get to the bottom of this curious pattern. Alas, even this Nancy Drew couldn’t solve The Mystery of the Curly Coiffure.
or The Clue of the Terrible Tresses.
or The Message in the Ridiculous Ringlets.
or The Quest for the Frizzy Grail.
You know I could go on for a long time with this, right?
There are some distinct advantages, of course, not least being the absence of worry about the status of your feminine hygiene stockpile in every purse, backpack, car, coat pocket and desk.
However, the decline of estrogen production plays havoc with many aspects of a woman’s body and her mind. In the case of someone who needs to eliminate every last molecule of estrogen from their system to avoid feeding cancer, there is, shall we say, a little more urgency to this transition.
So imagine my (not) delight upon reading this op-ed in The New York Times today.
The upshot: “The latest research, including [Dr. Mosconi’s] own work, indicates that estrogen serves to protect the female brain from aging. It stimulates neural activity and may help prevent the build up of plaques that are connected to the onset of Alzheimer’s disease. When estrogen levels decline, the female brain becomes much more vulnerable.”
The researchers used PET scans to “measure neural activity and the presence of Alzheimer’s plaques. The tests revealed that the women who were postmenopausal had less brain activity and more Alzheimer’s plaques than premenopausal women. More surprising, this was also the case for perimenopausal women — those who were just starting to experience symptoms of menopause. And both groups’ brains showed even more drastic differences when compared with those of healthy men of the same age.”
Ladies of a certain age, take note. At least Dr. Mosconi offers some suggestions for preventative measures.
“Many foods naturally boost estrogen production, including soy, flax seeds, chickpeas, garlic and fruit like apricots. Women in particular also need antioxidant nutrients like vitamin C and vitamin E, found in berries, citrus fruits, almonds, raw cacao, Brazil nuts and many leafy green vegetables.”
The nutritionists at DF have given me similar advice, though it’s a fine line when you have to watch your estrogen intake. Vitamins, fruits, leafy green vegetables are good, but you have to take soy in small, occasional doses.
I do appreciate the very unusual props for Brazil nuts, though. No one ever talks about Brazil nuts apart from Brazilians, in my experience. Viva Brasil! (Current political mess notwithstanding.)
Waiting for the doc to come in to see you on CT scan-result days is horrible. I feel a mix of intense boredom and an inability to do anything (read, write, listen to music, talk, etc.) because I’m too hopped up on angst about my results.
I stare ahead at the hospital accoutrements, most of which are never used in these check-ups. I feel stifled by this setting, jittery, steeling myself for the possibility of bad news. The occasional ping of messages coming through on the computer in this room annoys me. The people walking by in the hallway having normal conversations annoy me. The hum of the fluorescent lights overhead annoys me. The dirty, partly peeled-off manufacturer’s sticker on the base of the hospital bed annoys me.
All of this because I’m so nervous to get the results.
And then, finally, Dr. M walks in, quickly, with an air of expediency. Does this mean he’s anxious about my results? Or is he just running late and trying to make up time in his overloaded schedule?
“Your scan looks great,” he says, before he’s even crossed the tiny room.
I feel like a an overfilled balloon that is finally relieved of some of its gaseous burden. Pheeeeeeeewwww.
(I often feel a literal gaseous burden, to be honest, but let’s just go with this metaphor for now.)
Today was my last appointment with Dr. M.
He’s leaving DF for another practice. He told me this on our last visit, when he had only begun to share the news. But it’s real now. Friday is his last day here.
This is the second time I’ve had to say goodbye to a medical oncologist. It’s no fun, let me tell you. It’s even worse this time, since Dr. M was such an integral aspect of my care for breast cancer, and he stepped up in a huge way when I had my recurrence last year. Losing a doctor whose decisive treatment decisions made a big difference in my health outcomes is like losing a family member. It’s hard to describe these feelings. It’s not love, exactly, but there’s an intense feeling of dependence on this person.
I’ll tell you about my new cancer sister, A, soon.
I saw an interesting thread on Twitter last night.
Not only was this an interesting question, it was also a fun way to avoid the State of the Union, “The Political Thing” she was referring to, and an event I had vowed to skip this year for my own mental health (and perhaps Husband’s, too).
This response caught my eye, and prompted my reply:
And that’s totally true. It just so happens that I had been counting my scars recently. The total is an impressive (if I do say so myself) eight cancer-related scars. And that doesn’t count my insides.
In chronological order:
Exploratory laparotomy scar (surprise! You have a cancerous grapefruit hiding behind your uterus!)
Hysterectomy scar (Let’s get rid of all those problematic lady parts!)
Temporary ileostomy scar (While we’re at it, let’s get rid of a stretch of equally problematic rectum!)
Lumpectomy scar (Just a little pre-cancerous tissue, but let’s take it out to be safe!)
Sentinel node biopsy scar (To be extra safe, let’s be sure the pre-cancerous tissue didn’t spread!)
Power port insertion scar (ok, so it’s now full-on breast cancer and it spread to your liver. But let’s at least save your poor veins!)
Power port venous catheter insertion scar (Gotta get that chemo in there somehow!)
Bonus! strange bump on back of knee resection scar (Probably nothing, but we need to check out all your weird bumps “because of your history”)
BTW, that last one was nothing, thankfully, but I’m counting it, anyway. For someone who never had any serious scars to speak of before 2011, I think it’s a pretty neat list. And they sure tell one hell of a story.
The other tweeter’s final response was my favorite, and the real inspiration for today’s post.
She nailed it. Our bodies are a physical mash-up of Turner Classic Movies meets the zombie apocalypse.
I had a chest/abdomen/pelvis CT-scan today as part of my regular check-up schedule. Good news! The liver tumors that are still visible have become even smaller. I’ve decided to call them “tumorlettes” to highlight their tiny, insignificant nature.
That’s (feminist) cancer humor, people. Tumors are not insignificant, no matter how small they get. But cancer humor is the theme of today’s post, so hang on for some more jokes in questionable taste.
First things, first: check out those CT scan images above. The one on the left was taken today, January 3, 2018. The large, vaguely-yam-looking thing on the left and top of the image is my liver. The middle white thing is my spine and the inflated comma on the right side is my spleen. Compare this to the image of roughly the same view on the right, from September 29, 2017. You (may) notice the two dark blobs on the lower left of the September image. Those are liver tumors. In today’s image on the left you can just barely see those tumors. Still there, but much smaller. As of today, we could only see 3 liver tumors of any size on the scan. Voilà: science works!
My blood tests also look great. All signs are pointing in the right direction, which is a wonderful way to start the year.
Now, on to the fun.
I saw a man at Dana Farber today wearing a sweatshirt that said “I’m one in a million” on the front. On the back, it continued, “My doctor says so.” Hahahahaha! Haha! Ha…shit.
And now for the pièce de résistance, what I really wanted to tell you about, which happened today as Husband and I were leaving the second floor where they collect blood samples, waiting for an elevator up to the breast cancer floor. If I haven’t mentioned this before, DF has about 12 floors (not counting the five underground levels for parking). Floors 4-12 are each devoted to a different cancer or suite of cancer types. I’ve made a habit of hanging out on Floor 9.
I couldn’t help but notice a very large man nearby, also waiting for an up elevator. He was probably 60ish, maybe 6’5″, with a barrel chest and an overall imposing (not mean, just big) demeanor. He was dressed entirely in black: black boots, tight black pants, a black leather jacket opened to expose a low-cut black tank top that showed off his graying chest hair, black fingerless gloves. And black sunglasses. His (black) hair was a sort-of mullet that was slick and elevated on top. This was a hairstyle that required some effort. A black bandana held it in place.
To cut to the chase, the man looked like an old WWF wrestler.
This was a man very much in control of himself…except that the poor guy quickly revealed a fear of riding in an elevator with too many people. Please note: I am not making fun of anyone’s phobias here…just their style and word choices.
By way of background, the elevators in this place often get filled up to the point where you may have to subtly wave a stranger’s hair out of your face as they stand in front of you. There is a lot of polite shuffling that happens in these elevators to accommodate as many people as possible. After all, time is of the essence here. There’s an unspoken rule around DF that no one is more important than anyone else, though some may require more urgent care on any given day.
So Mr. Black, who is standing in the rear of the elevator, like us, but a few people over, says to his elevator compadres, half-jokingly, half-seriously, and at full volume, “we’re all gonna die!”
Just let that sink in for a minute. In an elevator full of cancer patients and their supporters, in a cancer hospital, he proclaimed our impending demise. He was clearly making a joke, but seemed to have no idea how poorly timed and placed that joke was.
After maybe ten seconds of total silence, another elevator rider spoke up. “You don’t say things like that around here, ” said the slight man wearing a yellow patient locator tag and a mask over his face. Mr. Mask happened to be positioned in the packed elevator such that he was directly facing Mr. Black. Mr. Mask said this matter of factly, without malice. This exchange was an orientation to the unspoken rules of Cancerlandia for the (apparently) uninitiated.
At this point, many of us laughed, relieved to break the very awkward silence. “Thank you for saying what we were all thinking,” I said to Mr. Mask.
Mr. Black got off the elevator at the next stop. I wonder if that was his destination or just a reprieve from his elevator anxiety. Regardless, I hope he found his way to wherever he was headed, perhaps via the stairs. I couldn’t help but wonder if there was another extremely large man wearing spandex pants somewhere in the building, waiting to see his friend.