There are few things more terrifying than the unknown.
I experienced this with my cancer diagnosis, although it would be the same with any catastrophe that significantly alters your life, such as losing a job when you’re already financially strapped. You’re hit with the news and then…everything stops. It doesn’t matter who else is talking or what other information is relayed, because the gravity of the situation stops up your ears and you hear nothing else.
A powerfully negative event throws up a wall that you cannot see around. When the future is undefined, it can take any form. This is a positive and liberating concept when you’re embarking on a new venture — “the sky’s the limit!” But in the case of something that’s painfully life-changing, our minds race to frightening prospects, often culminating in a terrifying extreme that we can’t see our way out of.
This is where you pause and breathe. Get your facts together and see what your options are. Things get easier when the darkness in front of you parts and you see a path to follow. After my cancer diagnosis, it was when I met with the oncologist who explained the possible variations of my condition, what the treatments would be for each, and yes, even what the potential outcomes were.
Sitting there, digesting the information, I finally felt like I had something to hold on to. If the diagnosis was a hulking monolith, smooth and slippery, blocking my way, my doctor’s words gave me handholds with which to climb.
Right then, the future looked more manageable. I still desperately wished that it had been different, but I saw the path through the ordeal and it gave me something to follow as I strode forward.
April 27, 2017 was a Thursday. It was also the day of my first chemo infusion. If you’ve ever gone through chemotherapy, you’ve sat through the full disclosure of all potential side effects. There’s so much that it can be disorienting.
But on that Thursday when my husband and I went to the infusion room, I learned that there was a process. Everything doesn’t hit you at once, you take it in steps as you make your way down the path.
I’m still walking. But at least I’m still walking.
If there’s one thing that the COVID-19 pandemic has illustrated, it’s that all of us on this planet are inextricably interconnected.
In times of disease spread, this may seem like a bad thing, but it’s also an opportunity to pause and reflect that no matter where we live, we all belong to the same species. We are all vulnerable to the coronavirus, no matter whether someone is a high-profile lawmaker, a movie star, a famous athlete or the custodian at an elementary school.
So this is similarly a good time to think about the importance of sharing resources and considering the common good. I’m looking at you, Ms. “I’m-cramming-three-packs-of-toilet-paper-into-my-cart-even-though-the-limit-is-one.” C’mon, don’t be like that. Leave the stampeding to cattle herds. And the rebellious college students who feel the right to crowd beaches for Spring Break celebrations? Time to grow up.
We should be above that. And I believe we are.
As many hiccups as there have been, communities are adjusting to the changing situations at a breakneck pace. My university has ordered all “non-essential” personnel to work from home, within a week, we scrambled to move meetings online and eke out a research plan. Likewise, university courses are transitioning to an online platform, as is my kids’ high school. Restaurants have switched to take-out wherever possible. And my daughter joined her fellow fencers for a ZOOM training session with their coach last night.
This is not to say that this has been effortless. My daughter will probably lose her restaurant job, which means that she won’t have the income to continue fencing, as the classes are a financial burden on our family. But she has a place to live, food to eat and incoming college acceptance letters. Others are losing their livelihood and looking at a far bleaker future. Many of our favorite small businesses are suffering. Therefore, as much gratitude as I have for the ability to work from home and not face immediate financial consequences, I have great compassion for those who are struggling through what could be a long and difficult situation.
And this isn’t even counting the number of infected individuals, some with severe complications. These days, “hot spots” are less about internet connections and more about loss of life. Few saw this coming and we won’t see the end of it for some time to come. My heart goes out to COVID-19 patients, their loved ones and the uncertainties they all face.
At the same time, I’m concerned about a group with which I’m more familiar: newly-diagnosed cancer patients. Getting a cancer diagnosis is frightening enough; getting that diagnosis when the treatment for the disease puts you at significantly higher risk for succumbing to a global pandemic is unimaginably unfair.
This is painful, so I look for the bright spots in the world: the clothing designers distributing patterns for people to make their own masks so they don’t compete with hospitals for supplies, and the designers making gowns, scrubs and face mask covers for doctors; the local seamstresses who are firing up their sewing machines and using their skills in the same way; the alcohol distilleries and perfume producers who are switching to making hand sanitizer; the millions of dollars raised to support intensive care units. All this gives me hope that we are bigger than the virus and we’ll pull ourselves out of this.
We have spent the last couple of weeks in various hunting-gathering trips in preparation for a possible coronavirus lockdown. Yes, we got enough toilet paper, but not multiple mega packs, as there is no place to store them. We bought a little extra frozen food, but space is limited in the freezer, just as it is in the fridge.
Being a mainly vegetarian family, we consume a lot of fresh fruits and vegetables, and those have to be procured on a frequent basis. Hoarding is not a real possibility at our place: we have no garage, basement or pantry. And I don’t consider a 30-roll pack of TP to be proper living room furniture.
Luckily, we have ample soap and I have the large bottle of hand sanitizer that I kept at work when I was going through chemo (think: it’s been a few years). Also thanks to cancer: a generously-sized box of surgical face masks that we will be dipping into, should one of us start feeling ill.
Finally, in a “clouds parted and a ray of light shone down”-type of serendipitous luck, we found a bag of N95 respirators in the back of our coat closet. Usually one finds old tennis rackets or worn shoes. We find items that someone might strangle us for.
One of my brothers had stocked up on the respirators during the devastating fires in Northern California, only to unload them on us during a visit here. I always complain when he leaves stuff at our place, but I’m feeling much more accepting of it now. My kids are planning to sell them to finance their college educations. (kidding!)
So we’ve prepped as much as we can, for the amount of space that we have. And while it’s not a lot, I believe it’s enough for several weeks.
But where I’m engaging in some serious “hoarding” is greedily protecting my daily meditation time. If there were ever a time to practice mindfulness, it’s now.
Consider this: during a trip to Costco a week ago, people were going nuts with toilet paper, as if it were a finite commodity and if we didn’t get it now, we’d be wiping our butts with tree leaves and old homework assignments for the rest of our lives.
It’s easy to laugh, but I myself felt a sudden bolt of urgency watching people squeeze nine months’ worth of toilet paper into their cars. It was difficult to resist.
Many people were operating as if with blinders on. At that same Costco, the check-out line for one cashier stretched all the way back to the bakery section. If you’re familiar with these enormous warehouse stores, you know that baked goods are way in the back. That is a crazy-long line!
What those shoppers didn’t realize was that the lines for the other cashiers were only one or two people long. But few people looked through the aisles enough to realize that. They simply saw a line and got in it, assuming that everyone else knew what they were doing.
Clearly, they didn’t
This is a perfect example of the need to slow down, take a deep breath and spend the time to understand what’s going on. In the face of unprecedented events, panic seems like a decent option. But just doing something–ANYTHING–isn’t the same as doing something useful.
Look, I get it. This is scary. As a cancer survivor, my white blood cell count remains depressed, and although my oncologist doesn’t think I’m in danger of dying from COVID-19, that doesn’t mean I can’t contract it. If I did, maybe it would tax my system more and send me to the hospital. There are so many uncertainties that I have to live with. The best thing I can do is to be mindful of what’s going on, accepting of what I can’t change, and rational about the rest.
So my wish for all of us going through surreal times for which we have no operating instructions is to listen to reputable sources, drop the conspiracy theories, pause and think. Don’t rush simply because everyone else is. Breathe. When this pandemic has subsided, there will be more toilet paper. I promise.
I’ll be honest, I’ve been putting off writing about what chemotherapy did to my fingernails. While I’ve wanted to provide frank accounts of my cancer treatment experience, this particular side effect was nasty, miserable and completely unexpected.
Given that I ultimately decided to post this, there are three points I need to make: (1) be forewarned, there are a number of ugly images on this page; (2) just because it happened to me doesn’t mean that it’s going to happen to you; and (3) I suspect that I could have avoided ending up in the ER, and I’ll explain how at the end.
So here it is: the most painful experience associated with my chemotherapy actually came after I was done with chemo, and it deserves a bit of an introduction. You may be aware that how chemo works is by killing off rapidly dividing cells, which is why people lose their hair and the lining of their GI tract. Fingernails are also affected, often turning black, and for some patients, falling off altogether.
My nails didn’t fall off but they really took a beating and ached a lot, almost as if they’d been slammed in a door (not the actual “slam” experience, but the aftermath). Many of them, particularly on the left hand looked like they were starting to detach, retreating into the nail bed.
Several weeks after my last infusion I noticed a little something under the nail of my left ring finger, like a bit of swelling. It didn’t look like much of anything to me, nor to my oncologist during a Friday, September 25 appointment, although he lamented that I might lose that nail.
Saturday, September 26, the increased swelling looked like a good-sized bubble under that nail. Sunday was worse, with far more pain. By that night I was in serious agony and even though I had already dubbed one of the nights after my first chemo infusion as the worst of my life, Sunday night definitively stole that title.
By early Monday morning I was in excruciating pain and paging my oncologist who exclaimed, “Hie thee to the ER!” I had a full-blown infected finger and there was a red line traveling down my hand and into my arm, meaning it was on its way to becoming systemic. I have no idea what I was thinking, not contacting my oncologist over the weekend, but the infection evolved very quickly. Had I known…
At the ER, healthcare workers winced when they saw my finger. I was miserable by the time they took me in, gave me IV antibiotics and (against my better judgment) morphine, the latter of which did nothing other than make me nauseated by the end of the day. I don’t understand how people get addicted to that stuff.
True relief arrived in the form of three lidocaine shots to the affected area. With the pain gone and the antibiotics at work, the ER doc lanced my poor finger and drained all the pus (no, I did not watch).
Once that was done, I was bandaged up, got a couple of prescriptions for 7 days of heavy duty antibiotics and sent on my way.
So here are two interesting points: (1) even after all this, I did not lose that nail; (2) of my ten fingers, only one nail became infected. For this second point, I have a theory: since I’m mainly vegetarian and was eating copious amounts of veggies during chemo, I had been instructed to clean all the raw stuff with a vinegar and water solution. I did that mainly with my right hand.
Interestingly, the fingernails on my right hand hurt less and had fewer issues than the ones on my left.
I wouldn’t be surprised if the acidity of the vinegar and its antimicrobial properties were the reasons for this. Obviously, I can’t guarantee that this made a difference, but were I to go through chemo again, I’d be spending more time dipping both hands into vinegar and water.
While being diagnosed with cancer was terrifying and going through chemo was miserable, the strange reality is that this fingernail episode probably posed the most immediate risk to my life. My husband recently admitted to me that he was afraid that after enduring six rounds of chemo, I’d fall victim to sepsis. So ironic that a cancer patient would almost be done in by an infected nail!
Most amazing is how my body healed all those insults to my hands, and within a number of weeks, the signs of that infection had faded. See photos of the healing process here.
More than two years after finishing chemo, after being afraid my hair would not grow back, and after being delighted with the way it did…I’m experiencing follicular drama, once again.
Once chemo was over, my sleepy follicles took their time getting roused into action. To say that I worried would be an understatement. I was still caught up in the unfairness of being smacked down by breast cancer. Confronting the possibility that after enduring the nastiness of cancer treatment, I might not get my hair back? That was too much.
Well, if you’ve read my posts on hair, you’ll know that my hair finally did come back. And there was much rejoicing.
And that’s where my hair posts stopped. But as happens with these kinds of things, that wasn’t the end of the story.
While still bald, I had been fed reassuring anecdotes by well-meaning supporters about hair coming back even better than before, lush locks that served as well-deserved rewards for undergoing the anxiety and strain of cancer diagnosis and treatment.
But as much as cancer patients feel like they don’t know what’s going on, those around them have even less of an idea. They want you to “stay positive” at all costs, so they overload you with lots of good news.
By now you can probably guess where I’m going with this. Because in Spring 2019, things started changing. Within a few months, my uber-cool spikey rockstar hair lost fullness as my strands thinned. Then, I saw “bald spots”.
So, let me explain how I define “bald spots”: these areas have hair, but due to the color (um, WHITE) and thinness, the hair seems translucent, even transparent. And along the part? You can’t see the roots well at all.
My reward for enduring cancer is invisible hair.
My hairstylist confirmed that the hair that comes back in after chemo is different from the hair that eventually settles in. And mine had settled.
Tamoxifen also played a role, since choking off estradiol and moving into menopause will age both you and your hair, particularly if you are premenopausal going into treatment, as I was. So this should have been expected, but in the hustle and bustle of all the other little things, like, oh, wondering if you’re going to survive the ordeal, no one really talks about the fact that there will be other changes that take place.
And now, I’ve been off tamoxifen for almost six weeks, but can’t tell whether there’s been any regrowth, not that I expect any. I meet with my oncologist this Tuesday and you can bet your panties he’s going to prescribe an aromatase inhibitor for me, so the pharmaceutical depression of estrogen will continue.
I am dealing. Mostly. Am I happy about this? Of course not. The last few years have felt like running a gauntlet of misery, but one where I’m only hobbled and not completely taken out. Given that, I’m ashamed of complaining, as there are many others doing so much worse. But not ashamed enough to stop writing about it, as this is my reality and it affects me. If I’m going through this, there’s a good chance that many others are too.
I’m supposed to be moving on and leaving cancer behind me, right? But like an annoyingly nosy neighbor, it keeps waving at me through my kitchen window, reminding me that it’s living next door.
After some intense research on the risk of developing breast cancer, I’ve come to the conclusion that the factor with the greatest causal relationship to the disease is, quite frankly, life. In fact, I sometimes wonder how people manage to NOT get cancer.
Being born female (well that covers about 50% of us)
Getting older (um, inevitable…)
Drinking alcohol (even moderate drinking has been shown to be harmful – find a different hobby)
BRCA1 and BRCA2 gene mutations, which everyone talks about, but certain mutations in the following may also increase cancer risk, although to a lesser extent: ATM, TP53, CHEK2, PTEN, CDH1, STK11, PALB2
Personal history of breast cancer (get it once and you’re a moving target)
Family history of breast cancer (including both close and distant relatives)
Personal history of breast lesions (even stuff that seemed benign-ish)
Radiation exposure, specifically to the face and chest, before the age of 30
Obesity (but mainly for postmenopausal women, see here; it’s complicated)
Having dense breasts (sometimes this is considered a top risk factor)
Beginning your period before age 12
Going through menopause after age 55
Having your first child after age 30
Never having kids (remember that when you’re paying for their college)
Taking hormone replacement therapy (HRT)
Certain hormonal birth control methods
Family history of ovarian cancer, especially before age 50.
Being white (at least in the U.S., although the rates of African-American women are catching up, often with a worse prognosis)
Having received diethylstilbestrol (DES) to prevent miscarriage, given either to you or your mother
Being inactive (honestly, exercise is critical – don’t overthink it – MOVE!)
Not breastfeeding (not only does nursing lower your risk, if you do get breast cancer, you’re less likely to get the aggressive triple-negative type)
Being taller (this may have to do with faster growth at an early age)
Doing night shift work (this may affect your hormone patterns, not to mention make you cranky during the day)
Smoking (the evidence for this has been deemed “suggestive, but not sufficient”, but inhaling smoke sounds like a bad idea regardless)
Exposure to cancer-causing chemicals (that’s, like, just about everything out there, and the connection remains unclear)
Diet choices (this is unclear, although there have been some links drawn to both macronutrient proportions and some vitamins, but more research must be done)
In a word, we really don’t know, but living a healthy lifestyle gives you the best chance for survival.
Finally, the things that seem to have no reasonable link (per WebMD and echoed on other sites):
Antiperspirant (no need to stink)
Bras, underwire and regular (feel free to support yourself)
Abortion or miscarriage
Fibrocystic breast changes
Coffee/caffeine (raise your mug in celebration!)
Hair dye (unless it’s really radioactive, but come on, that would be silly)
Judging from the above info, it can feel like cancer is waiting around the corner to pounce on the next unsuspecting victim that wanders by. I thought I had ZERO risk factors, but I can easily pick out several there. At the same time, I know people who seem like they’d have a gazillion risk factors and they never get zapped. So.not.fair. But that’s cancer for you.
And the more we find out about the disease, the more we see how complex it is. We are all different, reflected by our DNA, so it’s not out of the question that we might be affected in unique ways by these risk factors. Research is uncovering new connections all the time, and it may be that in order to find a cure for cancer, we’re going to have to look at the disease in ways that we never have.
I AM STRONG that means Sometimes I get frightened and that’s okay Sometimes I feel vulnerable and that’s okay Sometimes I cry and that’s okay Because although the past feels heavy and the future is unsure I am here NOW And today feels like a DEEP BREATH
Some of the recurring themes in my conversations with my oncologist have been that there’s so much we still don’t know about cancer and that the truth will likely be much more complex than we realize.
The recommendations offered as ways to reduce the risk of cancer should not be misconstrued as sure ways of preventing the disease. Thinking we can prevent something gives us a sense of security, which is what we crave. With cancer, we don’t yet have a clear view of how the processes that initiate a DNA mutation translate into our everyday world behaviors or environmental influences, if they even do. What we know is mostly correlational, which means that there seems to be a connection between two things, that they occur together. But that does not mean that one causes the other.
Consider this example: the growth of grass that comes in spring is correlated with the appearance of robins searching for worms. But it would be incorrect to say that the appearance of robins causes the grass to grow. That’s confusing correlation with causation.
In the case of cancer, we don’t have significant causal information when it comes to providing guidelines to humans about what to do and what not to do to prevent the disease. We can offer suggestions, although as in the case of the robins, we can be way off in terms of the way that one thing might affect the other.
Perhaps most unsettling is that as humans, we’re used to being the top predator. What we don’t have as protection inherently (claws, fur, huge teeth), we can use our big brains to manufacture. Cancer, however, still exerts its dominance over us.
We are trying, of course, and learning more all the time. Witness how far we’ve come with treatments, and how we’ve affected the survival rates. That’s a significant and positive step – as a breast cancer survivor, I can attest to that.
But not being able to effectively address the cause means that the treatments, as effective as they may be, take a huge toll on the patient both physically and psychologically. Many of us struggle in recovering from treatments that are considered highly effective, while others succumb to either the disease or the treatment itself.
So as the Breast Cancer Awareness Month of October comes to a close, it’s a good time to celebrate all the positives associated with our medical advances, but also keep an open heart for those who continue to suffer from any type of cancer.
And many of those do not have the benefit of being highlighted in pink.
I try to avoid “stream-of-consciousness”posts, but occasionally I’ll let one through.This one stings a bit…
I am tired. Physical fatigue is easy for me; getting emotionally wrung out is exhausting.
Events that have taken place over the past several years have demanded a release of expectations, a relinquishing of normality, how I think life “should” be.
Cancer was the big one. I used to wake in the morning, hoping that my diagnosis had been a bad dream. That I could laugh and shake my head, thinking, “Phew! Glad THAT wasn’t real!” And then go about my day, forgetting the fear and immersing myself in blissfully boring everyday life.
But that’s not what happened. I would wake in the pre-dawn hours after sleep had left me to the darkness, coldness spreading through my belly as I remembered that I had cancer. And in the midst of the fear of dying was that wrenching feeling of having to let go of wanting things to be different. Still desperately holding on when it was too late to do so.
Attachment leads to suffering. I know this, but I cling nonetheless, stubbornly refusing to accept change.
I was given a bit of news several days ago, too disorienting for me to even define in this post. Like cancer, it caught me off guard, and I cling to wanting things to be different. To be “normal” and uninteresting. I’m compelled by my need to fix it, make it comfortable and easy to accept.
Yet another thing I wish I could control. But I can only paw at it from the outside.
Now I’m engaging in emotional calisthenics, to try to find a notch on this slick surface that I can stick my finger into and get some sort of grip.
I wish this wasn’t the case. I’m disappointed that I feel the way I do. I tell myself, I should be more tolerant of what happens. But it’s the hope that things will stay the same that makes change so difficult.
I twist my thoughts into origami, trying to find a comfortable shape. It takes a lot of massaging to smooth out the edges and make this morsel easier to swallow. Every time I mull it over, it cuts me again.
At some point it is no longer the matter itself that causes pain. It’s all the emotion layered on top of it.
So I’m tired. Letting go, yes, but so slowly. You’d think that it would get easier with practice but even the process hurts.
Cancer can turn you into a stress-ball on its own, thankyouverymuch, but there are things that healthcare workers do that may worsen matters.
While there is always room for improvement in the many subtleties of physician-patient interactions (with subtleties being the operative term here, as anxious patients may be zeroing in on the “feel” of interactions and not just the spoken words), there are two big assumptions that I wish doctors would realize that they’re making:
The first assumption I’ve experienced has been made by non-oncologist physicians. They seem to be just as likely as the rest of the population to confuse correlations with causations. One doctor had been surprised that I had gotten cancer (hey, join the club) because my lifestyle “should” have been protective.
This physician, you could argue, was justified in saying what he did, as the messages we are bombarded with suggest that we have some control over our risk for cancer. However, read the fine print and you’ll see that in a great number of cases the risk factors that a cancer patient has don’t differ from those of someone who doesn’t develop cancer. But even doctors miss the fine print…
I brought this up to my oncology team which was quick to point out that as long as we don’t definitively know what causes cancer, we can’t make assumptions about whether or not someone will get the disease. So, yeah.
The other major assumption is one that I’ve gotten from the oncological community, and that is that on some level, most patients with a given cancer have the same health profile. Ironically, this concept is often mixed in with the conflicting assertion that everyone’s cancer experience is different. Granted, when you’ve seen a gazillion cancer patients, similarities emerge, and consciously or not there’s probably a tendency to pigeonhole people. Still it’s frustrating to be treated like I fit into a slot when I really don’t.
My own oncologist has realized that, thankfully, but he has done a good job of listening and I do a (*cough cough*) good job of talking. Perhaps a bit too good, since he’s mentioned that it would be best if I scheduled my appointment to be his last of the day, so that we don’t face as many time restrictions. But therein lies my point: oncologists need to ask and patients need to share, otherwise, the patient remains a two-dimensional entity and it’s more likely that assumptions will be made about them.
So if there’s a take-home message from any of this, it’s that good communication is an essential part of effective treatment. This is not an easy feat, as physicians have a limited amount of time with each patient, and patients might not think that a given aspect of their experience is relevant. Believe me, it is, and the more that we talk about this and get into the nitty gritty of it, the easier it will be for everyone involved.