Cancer has declared a stand-off. Not moving forward, not moving backward.
In some ways, this is the worst possible news. Had my numbers gone up, I’d be making appointments for scans, plotting my next move to enter a clinical trial.
Had my numbers gone down, I’d relax and coast. Get back to writing my novel and creating a new normal, instead of haunting medical research sites and online drug dictionaries.
Instead, my numbers stayed the same, holding me hostage in uncertainty. Rubbing my nose in my vulnerability.
When you’re feeling vulnerable, there are two roads you can take: Victimized Avenue or Pioneer Boulevard. Early on, I chose the Boulevard. But I have to admit, sometimes the Avenue appears like a shortcut, and I can’t help turning down it.
Yesterday I presented my clinical trials chart to my oncologist. He seemed impressed with the work I’d put into it. His practice is in the process of aligning with MD Anderson and will soon be offering that cancer research institution’s clinical trials. Four of my top five choices are MD Anderson trials.
My chart is in an Excel spreadsheet which can be hard to read on paper. So while I handed a copy to him, I also told him I’d email him a version. It would be easier to read and more importantly, easier to locate for a phone call he said he had with MD Anderson folks the next day. I grabbed a business card from his desk while he nodded earnestly.
When I got home, I went to email him the info, but his card didn’t have his email address. So I called his office. The receptionist told me she’s not allowed to give doctors’ email addresses out. Her name is Anita. I’ve renamed her We Need A – as in we need a lot more like her. She mentioned that I could go online and find it. I thanked her for the suggestion.
His email address isn’t online, but it wouldn’t take a third grader more than a blink to decode it based on the email addresses I could find. Within a few moments, I’d emailed him the chart.
But then I started to wander down the Avenue. Why hadn’t he told me about the email Cone of Silence? Why hadn’t he just been honest and either given it to me or offered me another solution? Was he just blowing smoke about the whole thing? Did he even have a phone call about clinical trials set up?!? Or the moment I left, did he just throw my chart in the trash and move on to the next patient? Most of all, mired in my vulnerability, I began to wonder, can I trust my quarterback to have my back?
Uncertainty casts grotesque shadows and the Avenue looks like a straight, well-paved road, before it veers off into ruts and potholes. This part of the journey seems unbearable. My mind monkeys have taken the steering wheel while I dive in the back seat to subdue my nausea that’s intensified by the taste and stench of chemicals exuding from me, the result of drugs I’ve just been infused with. Drugs that may or may not be working and demand a lot from me in the meantime. Mind monkeys are poor drivers. It’s a wonder I ever give them the wheel. In my weakness, though, the offer of letting someone else drive is too tempting. I can’t resist. I hold my stomach as they careen over every bump and hole along the Avenue – and this far in, there are plenty. I pray we get back on the Boulevard soon, even though, at the moment, I’m not feeling much the pioneer.
This morning, I got an email reply from my doctor. A short thank you sent from his cell phone letting me know he’d received my info. It’s enough to make me park the car and wait until I’m feeling better to take back the steering wheel as we both head out onto the Boulevard.
This year’s goals were pretty much the same as last year’s: Finish my novel. Finish renovations on our 1860s home. Complete a few side projects like faux graining a cabinet or putting a quilt applique on some threadbare bedding. I admit, I know nothing about the last two, which means there’s a learning curve involved that’s slowing me down. Truth is, there’s a learning curve to all of this.
My inbox is filled with advice, templates to download, steps to take to move me forward. Everyday I take time to read those emails or fill out the forms, put a plan together. For a week or two I even put the time into acquiring the habits I need – whether it’s blogging or spending a half hour writing 500 words in my novel or making dinner at home every night for a week with fresh vegetables from my garden. Then I’m all high-fiving myself over finally getting through the mire and moving on with my life.
Until…I get to my monthly oncologist’s appointment. And then, my life gets derailed. January was “Let’s look under the hood.” February was scans, March results, April why don’t we try something new, May was getting health insurance approval, June dawned a day of promise as my number shot down, pain shot up with the new drug. July was managing side effects and trying a lower dosage, August was the reality that July’s strategy didn’t work so we’re back up to a higher dosage and looking for new alternatives, like clinical trials. And here I am in September wondering where the year went and why I haven’t accomplished anything.
To be fair, I have accomplished some things. I did run a half-marathon with neighbors who became better friends in April. I did a triathlon in June and several 5K runs with a new group of friends.
Another good friend reminds me that I’ve continued to work on my novel, interviewed several famous people for stories I got paid to write, kept up with friends, have launched a campaign to run for borough council, researched cancer treatments and signed up for a conference to educate myself about clinical trials. I’ve mentored kids who live on my street. Volunteered to help judge a baking contest so I could write about it in my novel. I’m taking an online college course on doping, as the issue is a prominent theme in my book.
Still, I have a pile of magazines beside my bed that I can’t seem to get to read. And while I’ve had a lot of great lunches with friends who have helped me craft a plan or make a connection to move me closer to my goals, I still don’t feel like I’m making any progress.
So as I sit down to figure out how I’m going to accomplish in the remaining three months of the year what I couldn’t seem to do in the past nine months, I also ask myself how do I live alongside this disease and stop it from running my life as I’ve let it? How do I send it to the corner for a timeout so peace can reign in my classroom for the remainder of this period? And when will I be done with this lesson so I can move on?
Hope. That’s really what this blog is meant to be about. I think sometimes I forget that as I struggle day-to-day with the newness of recurrence and how I am trying to fit it into my life.
Hope is the raft that promises that there’s a shoreline awaiting me after cancer has torn my boat to splinters. It fuels the belief that I will live into my 90s despite the threat of this disease. And that I will be active and healthy until my last day.
Hope drives my optimism that something like a cure lies around the next bend. It may not relieve me of this condition, but it will allow me to live with it.
Hope is what allows me to smile, even when I smell like a refinery from the chemicals injected into my body to defeat those pernicious cells and everything tastes like metal.
Hope allows me to make plans – like running for town council or writing a novel or finishing renovations on our historic home.
Hope reminds me to enjoy the sunshine and focus on the things going right in my life – like making a living as a writer in a small, river town with neighbors who are supportive and friendly, the golden threads woven intricately into the fabric of my life.
Hope has drinks with me at outdoor patios with my family and friends as the sun sets on the river on a Friday night, when I speak giddily about the people I’ve talked to that week, whose story I’m grateful to have been able to tell.
Hope is that quiet voice on the bad days that says “you’ll get through this. You will prevail, no matter what.”
Hope is the belly laugh I have with good friends about days gone by, that at the time seemed dangerous and dark and now, looking back, seem hysterical.
Hope are the neighborhood children who knock on my door wanting to go for a walk with me and my dogs, to make a fire and go for ice cream, reminding me that life is too short not to stop, take time out and enjoy it.
In then end, these forces remain: faith, hope and love. The greatest may be love, but hope is the ship that we sail upon and faith is the wind that fills her sails.
I’ve spent the day writing apology emails to the people I blew off this week after being called up for active duty as a Breast Cancer Conscript. While I expect to battle this disease for a very long time, learning to manage it is another matter entirely.
The battle requires aggressive medicine that’s guarranteed to stop working at some point, which means moving to another aggressive medicine with its numerous side effects that seem to play out differently in my body than those who have gone before me.
As a Breast Cancer Conscript, I patrol cancer’s parameter under mostly peaceful circumstances until I come under fire. The higher ups (that would be my doctors) move in new artillery (that would be the new drugs), allowing better targeting of the enemy. But getting used to using it is a bit like a sniper who ends up battered and bruised from the recoil of the high-powered rifles he’s using until he gets used to the way it fires.
That’s been me this week, as I juggle my non-cancer life (and believe me, I do have one) with my cancer tour of duty.
In my non-cancer life, I am a freelance writer, which suits me well, both because I enjoy the vocation and because I can adjust my schedule when I need the downtime to acclimate to new meds and their side effects or for a day’s worth of scan’s or tests to see if they’re working. My current goal is to shift from selling the stories I write to becoming a published author, so that instead of getting paid one time for my work, I can generate residual income. That’s not a lesson of cancer, but of the financially successful. It’s just that cancer makes it all that much more necessary.
I’m no longer a new recruit to this war, but I am new to the warfare tactics. So when I started having side effects from the Ibrance – namely bone pain – I shrugged it off and decided to just grin and bare it. When it got intense, I went out and exercised, which kicked up enough endorphins to make the pain unbearable.
With normal pain from aging or overuse, your mind wraps around it and can tune it out, so the intensity fades and you can get on with your day. Or you know or have learned how to manage it with an ice pack, laying off of it for a while or downing a pain reliever like an aspirin or Ibuprofen.
With cancer medication side effects, it’s a whole new world. Sometimes the pain will disappear after a few minutes. Then, it will crop up in another body part, from say the leg to the arm or shoulder, a sort of Whack-A-Mole of pain surges. Sometimes it will be a dull ache, other times an intense burning. Sometimes something as simple as an allergy relief tablet such as Claritin will take it away. Other times, even doses of a high-strength painkiller like Oxycodone don’t work.
And there’s no rhyme or reason to it. I can go a day or two with no pain, then suddenly a flare up, which can bring on nausea and irritability. I’m amazed at how pain affects my moods.
My doctor has been sympathetic and liberal when it comes to offering drugs to counter the pain. The problem is, those drugs are addicting. In my age group the leading cause of death isn’t cancer, but overdose from opiods or suicide because of dependency. A few in my circle have suggested medical marijuana, which can alleviate pain, nausea, act as a mood booster – and most promising – is a possible cancer killer. Of course, our puritanical medical and political establishments frown on this. I have yet to have the conversation with my doctor. For now, he’s agreed to lower the dosage of the Ibrance. We both agree it’s too effective – bringing down my tumor marker numbers quickly, but obviously doing damage to the healthier parts of my body.
Yes, there are many promising drugs out there that give me hope for a long, healthy life. But I’m learning they all come with a price tag, each one heftier than the last. And while I win the battles, it’s still a long, draining war.
As hard as I try, I can’t go back to who I was. There’s nothing like a bad haircut to remind me of that.
I’ve had short hair since chemo ended, now four years ago. My body rebelled after being doused for months in that chemical wash. My nails and hair particularly made their dissatisfaction known, splitting and breaking and refusing to grow. I tried nail hardener and special shampoos, but the only thing that helped was time. My nails at least have started to grow again and have stopped splitting. My hair, though, remains fine and limp and every so often I panic, sure I have a bald spot. It’s no longer the lush locks I had.
I gave up bangs I’d worn since kindergarten for a side-swept pixie cut when my hair finally started to grow back after chemo. It looked cute and was a departure from the curly, salt and pepper mane that replaced the long, golden hair I’d lost.
Over time, I let it grow in a bit thicker, going for the Robin Wright look in House of Cards. It suited me, even though I never quite felt I recognized the woman looking back from the mirror.
For the first half of this year, I let my hair grow. I found a haircut that looked something like my old look, albeit a shorter version. And it had the bangs I’d forsaken. I was sure it would be the perfect cut for growing it long again.
So today, I went to my hair stylist – who rescued my wigs from over-washing-frizz-out as I cried and talked me in off the ledge of vulnerability during my baldness – and showed her the picture of the new look I wanted. She sized it up, told me I’d need to go a bit shorter in the back, but agreed it could be done.
Except it couldn’t. My bangs no longer sit right on my forehead and the shag layers are flat, making my hair look more like a helmet than tresses. I came home, threw water on it and parted it back on the side, giving it the pixie look I started with four years ago.
Back then, it made me happy. Today, it makes me feel stuck, like the movie Groundhog Day. Every time I think I’m ready to move forward, life takes me back to where I was to start all over again. Whether it’s a cancer recurrence or a starting a new drug treatment or a bad haircut. It’s like a merry-go-round I can’t get off of and there’s no brass ring to grab.
So here I am, back to being a woman I don’t recognize, but no longer having a meltdown over it. Sometimes you walk through a time warp and there’s just no going back. I’m living in such a time.
My body is cheating on me again, or so my doctor suspects.
Harmless flirtation, she says. Just being friendly, she tells me. And I sooooo want to believe her.
My doctor, though, is like a girlfriend who shoves a cheating husband’s phone in my face with an unknown number and says “Call it. What can it hurt? At least you’ll know.”
So he orders tests and scans in hopes of explaining why my numbers aren’t doing what they’re suppose to do. Calling my body on her stuff.
Can she really be this duplicitous this soon? I’ve only been on these meds a year and they were working so well. And I’ve lavished so much attention on her – running, swimming, biking, eating well. Basking in the sunlight outdoors. Avoiding stress. Certainly she must be enamored with me. Certainly she can refrain from the addiction, the habit of consorting with cancer cells that spell both of our doom.
I know she can’t help herself, that even if this time I find my faith in her is warranted, there will be another time, another place where she’ll cheat. Those wanton cancer cells are too tempting.
My doctor gives me the same advice my friend would – a change of scenery will do you both good, whether she’s cheating or not. Time to chart a new course, no matter whose number it is, no matter what these numbers mean.
We talk about switching out one pill for another. Maybe this new one will neuter my body’s desirous, philandering ways. Maybe this one will keep her faithful, at least for a while longer.
And so I endure the humiliation of the accusation, the suspicion and what it takes to uncover the truth, whatever it is, dangerous or not. The poking, the prodding, the fasting, the gagging on chalky substances so I can be scanned by coffin-like machines that can see into my inner-most spaces, beyond even my nakedness and scars. So that my body’s true intention is revealed and then everyone will know.
Maybe it’s like a misdialed call, the numbers a fluke, I tell myself. Maybe she even intends to surprise me, prove to me her love and the tests will show that my body’s banished those troublesome cells forever. My doctor, like my girlfriend, smiles smuggly over a raised eyebrow that says I’m being delusional when I suggest this.
The truth is, we are bound forever by unfaithfulness. Me and a body who can’t refrain from cheating on me with cancer cells that may one day be our demise. And my delusion that it could be otherwise….if only. If only what?