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.
Note: I wrote this in late December, but couldn’t post it because of the veeerrrrry slow internet at my folks’ house.
What a year this has been. Not just for me, or my family, but for the whole world.
I wonder if this sentiment (“last year was horrible!”) is as old as the 365-day calendar. Did Sumerians say to themselves, “2932 (BC) was a really shitty year–I hope we see a better chickpea harvest and some quality lyre music in 2931″?
I’m in no way trying to minimize the many horrors, disappointments, and pains of 2017…I just wonder.
That said, and since this blog is devoted to my own cancer journey, I’m ending the year on a high note. My treatment has been very effective this year. I’m feeling well, strong, and hungry. My hair is growing, slowly, and in the meantime it’s as soft as baby hair. I love the feel of it, and I’m freshly astonished by its texture every time I touch it…which is often.
It also helps that I’ve spent the past two weeks with family, celebrating the countless small joys of life as seen through the eyes of my 8- and 5-year-old nieces, enjoying unhurried quality time with my parents, exchanging knowing glances and inside jokes with my sister, laughing with my brother-in-law, happily watching 5-year-old Niece snuggle up with Husband, and carefully avoiding the news. Real life will hit me again hard enough in another day. No need to rush it.
This is a good time to thank you, my very dear family and friends, for your love and support. Getting through cancer truly does take a village. My village is large but not overbearing, boisterous and solemn in good measure, extraordinarily helpful yet respectful of my independence. I could not be more fortunate. I often wonder how people who lack a support network of this scale manage to get through the daily bullshit and craziness of cancer.
I’ll close this year by offering you an outcome of all that free time I had while hanging out in the North country:
Sometimes in life you get to look back on a choice and recognize that it was a good one. For example, the fact that I decided to buy an Aflac cancer policy in 2009, at the age of 35, two years before I was diagnosed with uterine leiomyosarcoma. Or that I agreed to serve as an interim executive director in 2006 when my friend S. asked me to, launching a career path that I never would have imagined for myself. These are choices that, in hindsight, were both wise and fortunate.
But when you choose to commit yourself to a partner you must make a series of choices about that person. Every year, every month, and every day, you choose to be with them. (At least, that’s how one hopes it would work.)
When I look at the choices I’ve made about Husband, I can see they were good ones, and that I’m wildly fortunate to have had this man by my side, through thick and thin.
It is decidedly difficult to carry on a healthy relationship through cancer. Your interactions change (or don’t), your priorities change (or don’t), your needs change (or don’t)…you get the picture. As much as any relationship takes work, I think the addition of a disease or illness that makes a couple face mortality adds a different layer of challenge. This might be like getting to the 20th level of a video game, only important.
The challenges involved in sustaining healthy relationships during and after cancer is another reason for the growing interest in survivorship research. Being a “survivor” (a term for which I have no affection) entails a lot more than monitoring tumor markers and getting regular scans and sorting out the new normal of your body. Partners and other close family members bear psychological scars and triggers, just as the patients do. Figuring out how to navigate these emotional minefields is a long and ongoing process.
Husband and I have been together for fifteen years, and we’ve been going through this survivorship process for 5+ years now. It’s not been easy, but we’re still doing it. Together. Every day. I don’t know the words to describe the depth of my gratitude for his continuous investment in our relationship. Thank you, R. I love you.
And you, gentle reader. I’m also grateful for you, my friends and my family. Husband posted a beautiful Facebook post today on this topic, thanking the many people who have helped us in countless ways. Like Husband, you keep coming back to provide love, care, and assistance whenever we need it, over and over again. Thank you. I love you, too.
My motto this year has been “life is strange.” (Indeed, life has been stranger this year than ever, at least in my lifetime, not least because of cancer.) When I tell people my cancer stories and they look at me with that stricken, grievous face we generally offer to people we feel sorry for, I respond by saying, “life is strange.” This is an empirically true statement, of course, but as much as I’m down with empiricism, I’ve taken to using it because it offers me some peace. It occurs to me that this might be my own, non-religious version of the serenity prayer.
There are some things in life we can’t see coming. Some of them are good, or perhaps we make good choices to avert the things that are bad. Some of the things that come at us are bad, or perhaps we make bad choices to avert the things that are good. Sometimes we get lucky. Sometimes we don’t. Any way you cut it, life is strange.
In spite of this strangeness, I have so much to be thankful for. So today I revel in my gratitude. I hope you get a chance to do the same.
Clearly, I’m better at sharing bad news more promptly than good news. I apologize to all of you for this, because you deserve to know the good news, too.
So, here it is: It’s been 73 days since I finished chemo treatments. I’ve continued to receive the two antibody infusions every 3 weeks.
As of my last visit on October 30, my blood work was excellent. Specifically, the CA27-29 tumor marker–the one with a value of more than 4,000 on May 8–was down to a value of 1. ONE!!! This is the level of CA27-29 that a normal, non-cancerous person would have. (Not that I’m a “cancerous person,” I hope…but you know what I mean.)
In short, this is the optimal outcome from treatment. The regimen worked, allowing me to transition to recovery mode.
And recover, I have!
My appetite is back. I’m not eating as much as I was, say, a year ago, but that’s not a bad thing. 😏
My sense of taste has returned. I’m now enjoying food again, experiencing the range of flavors that drive my love of food. No more eating cardboard
My hair is growing. I was curious about what my post-chemo hair would look like. Well, it looks gray. And black, which is weird, because my hair was never black. It kind of looks like someone used a shaker of powdered sugar over my dark hair. I know this is typically referred to as “salt and pepper,” but this looks different. To me, the gray seems to be a fine covering on top of the dark hair. Someone told me I looked “distinguished.” I think I just look old. (Though I do still love the short hair.)
Of course, growing hair and my lack of natural estrogen means that my facial hair is also growing back with a vengeance. It struck me as so odd that I lost most of my facial hair in the month after finishing chemo. But it’s grown back as quickly as I lost it. Now I have to do some serious grooming to keep everything under control: eyebrows, witch hairs, mustache. Sigh. It almost makes me miss my penciled-in eyebrows. Almost.
The neuropathy has improved a lot. My hands are recovering faster than my feet, although I still lack dexterity. Anything that involves picking up something heavy from underneath (like rotating our mattress, which I tried to do with Ray the other day) is very difficult, because I can’t muster the control of my fingertips to get under a corner. I’m still taking the gabapentin before I go to bed, and it helps.
My fingernails are still wacky. They look like a layer cake, with healthy nail near the cuticle, a no-man’s land of questionable commitment to the nail bed in the middle, and a top layer that is totally unattached to the nail bed. This is part of the complication with picking things up–I’m still afraid I might rip off a nail if I’m not careful. But it’s getting better. My toenails are also wacky, but it’s November…sock season!
And, finally, there is my overall well being. The fatigue I had during treatment, and for the first month or so after, is pretty much gone. I’ve been traveling a lot for work since September, and would have every excuse to feel exhausted. But I don’t!
All in all, I’ve been fairly shocked by how quickly I’ve begun to feel better. I’ll leave you with a few pictures, including my Halloween costume from this year. Husband had the great idea for me to dress up as Imperator Furiosa from Mad Max: Fury Road. Why, you ask? Because my hair was *perfect* for the part. Plus, it felt good to be an ass-kicker.
My normal sense of taste is returning. I’m once again starting to taste the range of flavors that makes my impatient palate so happy. And this helps make me feel like me again.
And my hair is growing. It’s filled in on my head to the point where this looks like a purposeful haircut, which makes me seem very bold and edgy to people who don’t know me. Joke’s on them, but it’s fun.
My eyebrows, only so recently departed, are growing back in, though I don’t have much more than an eyebrow version of a five o’clock shadow. Still, it’s progress. My eyelashes are still AWOL, and I learned that wearing eyeliner without any eyelashes looks really weird. I won’t do that again.