“If you want a happy ending, that depends, of course, on where you stop your story.”
Orson Welles director, actor and producer
Honestly, this blog is supposed to be funny, but sometimes it’s hard to get there.
I am a cancer survivor. You cannot imagine how good it feels to write that. This blog was established to help me document my journey, process my experiences and, ultimately, inch away from thinking of myself as a cancer patient and towards being a mindful, peaceful and accepting (that’s a tough one!) creature on this Earth. Be warned, some of my posts are self-indulgent and unnecessarily wordy; I have much respect for anyone willing to slog through them.
Right now, this blog is anonymous: I need to stumble through my feelings, complain when I feel like it and be blunt when necessary — and I need a safe space to do it without fear of judgmental glances. While my goal is to keep this light-hearted, I realize that I have the pleasure of being a survivor and chuckling about my cancer experience; there are many who are not granted that opportunity. Writing this blog is a privilege.
Cancer sucks. It’s an indiscriminate spectre that has haunted the lives of practically everyone at some point, whether relatives, friends or ourselves. For me, cancer cannot pass into faded memory quickly enough, but at the same time, I am infernally curious about the disease and how it has changed me.
So here are my facts:
In early 2017, I was diagnosed with triple-positive (estrogen+, progesterone+ and HER2+) breast cancer. The lump was 1.6cm in diameter, removed at the end of March, along with three sentinel lymph nodes that were revealed to be unaffected. Chemotherapy (Taxotere & carboplatin) started a month later and lasted the entire summer, 6 hefty courses, one every three weeks; adjuvant therapy (Herceptin, a monoclonal antibody) also started at this time, but went for 17 courses, ending in April 2018. Daily radiation treatment lasted six weeks through autumn of 2017. A 3-D mammogram in February 2018 showed nothing, in a good way. That marked my first year without the tumor.
I wish I’d been able to write in 2017, but my head wasn’t there. I was not processing, I was existing and enduring. After my final Herceptin infusion, my port was removed and I turned around to see what had happened. It took several months of writing before I tossed out my first post in September 2018, privately at first, and then, “Hello, world!”
It’s going to be a bumpy, unpolished ride. Bear with me.
A few days ago, I decided to eat a grapefruit. We had gone to a Korean market earlier that day, and the citrus fruits beckoned to me with an enticing fragrance. I couldn’t resist.
So as I was finishing up one of the most delicious grapefruits that I’d had in a long time, I started thinking. Back when I was taking tamoxifen, I’d come across an admonishment not to eat grapefruit because it could interfere with absorption of the medication. But I wasn’t taking tamoxifen anymore, I was taking letrozole. Could the same be true?
I started googling, first on my phone. And as the search results came in, I had to switch to my computer because things were looking confusing. Many sites said “NO” in no uncertain terms. Grapefruit can prevent the letrozole from breaking down in the body completely, leading to higher levels remaining than could be safe.
It wasn’t that the grapefruit was hindering the efficacy of the letrozole, it was that grapefruit could set up a dangerous situation of “overdose”.
Of course, googling often results in messages that are big on warnings and short on details. So I dug further. and I happened upon forum posts where other women were asking the same questions.
I read the following exchange: one woman said she’d spoken to two different hospital pharmacists, both of whom had given her the okay to eat grapefruit. A number of other women (like, everyone else) chimed in on how they had unequivocably been warned to stay away from grapefruit (for the above mentioned reasons). The first woman reiterated that she had been told by HOSPITAL PHARMACISTS that she could each grapefruit with impunity…and so it went.
What really bothers me about this is that so many websites suggest that, it really it best to avoid grapefruit due to possible interactions with letrozole. But I slogged through the entire bloody informational insert from the manufacturer of my drug and NOWHERE did it mention that I shouldn’t eat grapefruit. There was also nothing on the bottle itself, nor did my oncologist say anything about that.
However, WebMD’s grapefruit interactions webpage, while not mentioning letrozole by name, did suggest issues with estrogen and also Cytochrome P450 substrates (of which letrozole is one, but I just happen to know that; others wouldn’t necessarily). WebMD’s letrozole info pages made no mention an issue with grapefruit. I mention WebMD mainly because many people consider it a reputable site and may go there for information.
If it truly is that dangerous to eat grapefruit while taking letrozole, why is that not explicitly stated on the container? Why would any woman think to google a random fruit or vegetable, like, “I think I’ll eat an artichoke and shiitake mushrooms today, but first I’ll do an internet search to make sure they don’t affect my medication.” Who plans their meals like that?
The bottom line is, it depends. It depends on when you’re eating and how much you’re eating, and how many days in a row. But all of that is so unsatisfying to me, who wants a concrete answer. Cancer is not about answers, however, it’s about getting comfortable with living with the unknown.
So, back to the grapefruit. Spooked, I skipped the medication that evening, although I’m sure I could have taken it and still lived through the night. I’ll ask my oncologist about it during my next visit, but I expect that his answer will be, “just don’t overdo it.”
And there’s another fragrant grapefruit sitting on the counter, which I will eat at sometime in the future, maybe half at a time. Here’s to living with uncertainty!
Around this time of the year, I get uneasy. It’s February, which means it’s time for my mammogram and the determination of whether I’m still in remission from breast cancer. It’s also the month when, in 2017, my life was slammed in a different direction and the best I could do was try to hang on.
February 8, 2017: Doctor’s appointment. After feeling a lump in my breast for six months (SIX MONTHS!!!), I finally met with my general practitioner to have her tell me it was nothing. Except that’s not what she said. Instead, she gave me a referral for a diagnostic mammogram and warned me not to put it off.
February 23, 2017: My mammogram and diagnostic ultrasound. I had not expected that waiting two weeks for a screening would be so horrible, but my anxiety worsened with every day. I also had not expected the radiologist to come in and tell me that I had cancer. Technically, he wasn’t supposed to do that without biopsy results, but he knew what he was looking at. One in eight women is diagnosed with breast cancer at some point in her life, so he’d seen his share. Things spiraled downhill after that.
February 28, 2017: Biopsy. This procedure was anticlimactic in the sense that I knew I had cancer (see above). What I didn’t yet know was how aggressive it was. The procedure itself wasn’t bad but the mammography technicians were unable to get a clear picture of the titanium markers that the radiologist who biopsied me had inserted as surgical guides, so they took over eleven mammogram images on that left breast. The physical squeezing was miserable, but I was being squeezed mentally too. I think they eventually got the image they wanted…or maybe they didn’t. It was all a blur. I didn’t want to remember.
But now it’s three years later and I remember everything too clearly. Every February, I lose my footing on the Earth and hover for a few weeks in limbo, starting from when I make my mammogram appointment.
I’ll have an uneasy feeling until I get the “all clear” from the radiologist, or “I’m so sorry, but…”. On one end of the continuum, there’s glorious relief, on the other, mind-numbing anxiety, and I’m standing here in the middle. Most of my life now is lived in this middle ground and it’s a struggle to release expectations and attachments to how I want things to be. I’m not great at it, but I have the rest of my life to learn to deal. I hope that’s enough time.
Given that there’s a lot of divisiveness and polarization in the United States right now, I’m looking for the humanity in my country. Most of the time I feel rather ineffectual, and I have wanted to make small difference in the life of a stranger.
My opportunity came in the form of a news story (mine, Time online, but this has been posted by a wide variety of sources): Maj. Bill White is a 104-year-old veteran of the Battle of Iwo Jima who spends much of his time scrapbooking. He mentioned to the interviewer that he’d enjoy getting Valentine’s Day cards, which he promises to keep on his bookshelves, the same ones where his Purple Heart sits.
Now, while I’m decidedly not a fan of war and wish that we lived in a world where the military was not necessary, I have respect for people who are willing to give of themselves, no matter what the venue. But what moved me the most was the spark that this elderly man had. When he sang the Marines’ Hymn (see video), his voice was clear and unwavering. He still had so much life in him at age 104.
And his secret for living so long? “Just keep breathing.”
I will be sending him a Valentine’s Day card. If you would like to do the same, here’s the address:
Operation Valentine ATTN: Hold for Maj Bill White, USMC (Ret) The Oaks at Inglewood 6725 Inglewood Ave. Stockton, CA 95207
And if not to Maj. White, perhaps there’s another deserving individual whom you could surprise this Valentine’s Day with a cheery greeting? I encourage you to do so. There’s still enough time.
I can’t write about discolored and infected fingernails as a side effect of chemotherapy without throwing in some good news too. Not only did I document the sad state of my nails in photos, I kept taking pictures even after the ER visit. I wanted to see what the healing process looked like, something that can be difficult if you don’t have photographs to compare against. So what’s the good news? That which was nasty didn’t stay nasty.
(About the photos…I never intended to post these so they aren’t the greatest images, and I’m still a dork when it comes to working with WordPress, so I apologize for the weird sizing. Eventually I’ll figure it out.)
A week had passed since my infection had been treated (see previous post), I was still alive (a good thing!) and my nails hadn’t fallen off. My right hand, ignoring the battles of the left, was marching onward and away from chemo memories.
As I mentioned in my last post, I was wondering how much influence the vinegar and water solution that I soaked all my raw veggies in to clean them (per doctor’s orders!) had on the state of my right hand. It had spent much more time in that solution, at least several times a day, and didn’t show nearly the same amount of damage that the left hand had.
A week later, instead of nails dropping off one by one, the healing continued.
While nails do take a while to get rid of the damage they sustained, almost two months after the infection and about two and a half months following my last chemo infusion, they no longer screamed, “chemo patient!”
My nails served an important function, because I could use them as a visible indicator that things were, in fact, changing and recovery was truly taking place. That meant a lot to me as I awaited the return of my hair, a process that did not come as quickly as I’d been led to believe from the stories of others. But my nail journey was also something else: a reminder that everything awful, even the fear and pain and bruises from cancer, would eventually fade.
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.
On this Martin Luther King, Jr. Day in the United States, I thought it would be appropriate to highlight the idea of service to others. The possibilities are endless, as are the rewards.
The need is great all over the world so it’s not difficult to find a place to begin. Having said that, I’d like to bring “Random Acts” to your attention.
Random Acts is a non-profit started by actor Misha Collins (of “Supernatural” fame) and it operates as a clearing house of goodness. The organization raises funds and then distributes money to a broad range of causes. What sets this organization apart from others is that it enables individuals to apply for small (>US$500) grants that can be used to support a kind act, perhaps too small to attract the interest of major charities. (Larger Random Acts are also a possibility.)
I really like this idea, because kindness doesn’t have to be large-scale to make a meaningful difference in someone else’s life. We often overlook the “little things” that we can do in favor of making a huge impact. And that usually means that many of us will do nothing because, we tell ourselves, one person will not make a significant change.
Kindness doesn’t have to attract news cameras or go viral on the Internet in order to be a beautiful act of charity.
My kids and I got hit with the flu right New Year’s Day, which meant mandatory rest and time to browse the Internet. After randomly clicking through websites, I landed on a story about the stray dogs of Chernobyl.
This touched me deeply because I hadn’t realized that animals were abandoned during the nuclear disaster in Chernobyl, Ukraine in 1986. When people evacuated the area, they were told to leave their pets, that they’d be able to soon return. Obviously, that didn’t happen, so animals that had been used to being fed, watered and otherwise cared for were suddenly left alone. To make matters worse, the Soviet government sent soldiers into the disaster area to kill the homeless animals in an effort to contain the radioactive contamination.
Amazingly, some dogs and other pets survived in the exclusion area, even through harsh winters, lack of food, threat of predation and possibility of rabies. Given that it’s been over 30 years since the accident, the current “dogs of Chernobyl” are several generations away from the original dogs, but their circumstances are still dire.
As I’ve gotten older, gone through cancer treatment and now menopause, I find that stories like cause me to disintegrate into a mushy mess. It breaks my heart that these animals were serving as companions to humans, and then were left to suffer from a human-made disaster when it was deemed too dangerous for the humans to stay there. These cruel twists of fate seem too much.
However, this post is not about agony or anger against humans, it’s about hope and compassion. A charitable group called Clean Futures Fund was established, as their mission statements reads, “to raise awareness and provide international support for communities affected by industrial accidents and long-term remedial activities”. Among other projects, they sponsor the ogs of Chernobyl effort: veterinarians and other experienced personnel who care for the descendants of abandoned pets by spaying, neutering, vaccinating, providing first aid and whatever else needs to be done to keep the animals as healthy as possible.
And the best news is, after years of people being told that all the animals were radioactive and therefore unadoptable, that presumption has been shown to be a myth. How? Because the radiation found on the animals can be washed off – it comes from the environment, not from the animals themselves. Finally, puppies are being removed from the exclusion area and sent to loving homes.
There are many more animals still left, but there are also many dedicated and courageous volunteers who are determined to make sure that these furries are not forgotten. While this story isn’t over yet, it promises a happy ending.