Pardon My Goatee

As my male oncologist and male pharmacist prepped me for the side effects during my first dose of Cetuximab, they down played things like the ultra-dry skin and the nail bed infections - something that would ultimately land me a weekend in the hospital, removal of my toenails, and some IV antibiotics. It was all about the rash, and every pill and cream handed me was about suppressing and controlling what is well known to be the most visible side effect of the EGFR-inhibitor drugs.

After a couple of months I noticed something else unexpected, and casually mentioned it to my pharmacist as he stopped to check on me during my weekly dose. "You didn't tell me I'd be growing a beard!" He seemed surprised, and before denying its possibilities quickly searched for side effects on his phone. And there on the drug manufacturer's website it said:

"Skin problems are one of the most serious side effects of ERBITUX. Skin problems include an acne-like rash, skin drying and cracking, infections, and abnormal hair growth."

Abnormal hair growth. No kidding. 

I now found myself sporting hair in places I didn't think my face I needed it, and dark hair at that. Coating my nose were tiny little black hairs only visible under my magnifying mirror and spotlight. There was the dark beard and mustache I was eager to wax if my raw skin would allow it. The first time it happened I was willing to face the repercussions it might have on the compromised skin of my upper lip. It may bleed and scab over, but at least it would be hairless. 

And there is of course the famed long, curly eyelashes everything thinks are so amazing on these drugs. What they don't tell you is those long curly eyelashes curl in any direction they want, including right into your eye. And I can assure you mascara doesn't look nearly as lovely when each eyelash is going off in its own direction. It also doesn't look lovely when its coating the crusty edges of my eyelids, which seem to perpetually be oozing something that replaces itself and hardens faster that I can scrape it off. My normally fine and dainty eyebrows were replaced with thick, course hair that had no interest in staying calm in place or hanging out in the same direction. I resorted to trimming them short, making it all the easier to pop the pimples I'm not suppose to touch and clean the crust that coats them every morning when I wake up.

Last year at my annual skin check, I asked my dermatologist if there was anything she would recommend for the rash aside from my usually scripts, and casually mentioned the obnoxious facial hair. As she scanned my body with her illuminated magnifying glass, she came to my ears and exclaimed, "Girl, you're just down right fury." I hadn't noticed, but I wasn't just the bearded lady, I was also coated in a light dusting of fine baby hair - something you might find on a newborn fresh out of its first bath. 

Having shared a motor home with hair and make-up on many a film set, I had learned of and partaken in the industry practice of face shaving. Not really a hairy girl, I knew the makeup artist used this on talent to make their face paint look more flawless, and to exfoliate. There is a rumor going around that men age so much better because they are forever exfoliating with their daily shave. I tended to opt for the exfoliating factor when I did practice the fine art of a facial shave, as I wasn't really one for wearing layers of foundation.

Faced with a mug covered in course, noticeable hair (in addition to a pimply rash), I decided to bear any pain and misery it might cause my raw, scabby face and shave. It might be one way to also rid myself of the chronic layer of crashed dry skin around my cheeks. I didn't have the patience to wait for my goatee to grow long enough to wax again, nor did I have the confidence to walk around grooming it with hipster beard paste until it was long enough to do so. 

Shaving would be it for me, and I was going to own it. Like so many dirty details of this disease, I have had no shame. And just as normal ladies would never speak of poop or facial hair, I am not a normal lady and so I will.


The Ripple of Empowerment

At some point in my youth, my dad told me that secrets can breed shame and shame has power over you. Sorry if you don't remember that dad, but you did and it stuck with me.

When my left leg unexpectedly swelled up 3 years ago, and I was told it was always going to be swollen, I was ashamed. I was ashamed that my leg was bigger than it had ever been, I was ashamed that it wasn't symmetrical to my right leg, and I was ashamed of the compression garment that I would have to wear every day for the rest of my life. 

Not only did cancer make me different, now my fatty leg did, too.

Last year I watched the documentary Embrace on Netflix, and in it Taryn Brumfitt travels the globe talking to women about their bodies, body image, and social perceptions. Toward the end she interviews Turia Pitt, an Australian athlete who was burned over 65% of her body after being caught in a wildfire during an ultra marathon.

She is someone who cannot hide her perceived imperfections. While being interviewed in the documentary, she said something which immediately resonated with me and changed the way I looked at my leg:

"If you're self conscious about something, other people will notice it. But if you just own it, people don't care." 

And she was right. I didn't so much decide to own it, as much as I committed to not giving a shit anymore. I've spent the last year ridding myself of the shame, and wrapping that fatty leg around my inner honey badger. I embraced my shorts, stopped shopping for maxi dresses, and gladly accepted a last minute invitation from a friend, photographer, and fellow lymphie to do a photo shoot with my shameful little secret on display.

And the response that came forth was overwhelming. I realized that 30 minutes on a rainy Saturday morning had an impact beyond me and the affirmations on social media for these photos. It made me realize there are people that need to see photos like these. They need to see people just like them living with their self-prescribed shame on display for the world to stare out. Get the rubbernecking out of your system people so we can all resume our regularly scheduled programming. By me releasing my shame, I gave others the courage to release theirs. It's the ripple effect of empowerment.

Now when I step out the door I channel what Turia Pitt said, and remind myself that I don't care so they won't care. Feel free to stare at my fatty leg all you want while I obliviously resume living my life.


Aunt Barbara

My dad texted me the other night to let me know his sister was dying. Her bout with cancer a few years back had returned, and they opted to keep the information close at hand. He had intended to make the drive down to see her this weekend, knowing it would be his time to say goodbye. But life and cancer had other plans, and she passed away this morning. 

In his text to me a few days ago, my dad relayed that my Uncle Bill said he was ready to let her go. That’s a startling and brave statement to make for a man that I know adored this woman for over 50 years.

It's the last selfless act of a relationship - to tell the one person you never want to be without that it's alright to leave. 

But I know that’s what happens for cancer caregivers and partners. It’s not that they want to say goodbye, but they know the inevitable end is coming whether they like it or not. And the idea of the end bringing long overdue relief is often so much easier than continuing to watch the person they love suffer. 

Death by cancer isn’t the peaceful, quiet, art directed end that Hollywood makes it out to be. It’s not graceful and serene, but months, weeks, and final days filled with pain so uncontrollable the only option in the end is often medicating to the point of sedation. It’s machines, oxygen, tubes, drains, and a withering away of a body that can no longer be nourished as it rots from the inside.

I think death itself isn't want cancer patients fear, but the process it's going to take them to get there. But in all of its brutality, it gives us one gift, and that's the opportunity to say the things we want to say and to say goodbye.

I didn't get to know my Aunt Barbara until I was a teenager, and I found her feisty, witty, opinionated, and never one to bite her tongue. But the humor with which she delivered every line would keep anyone from ever being offended. She loved her family and my Uncle Bill fiercely, and that alone was enough for me to admire and everyone to emulate. 


My Dumb Luck Should be Taken in Context

My friend Stacy shared an article written by a cancer survivor about the terminology used surrounding this disease on Twitter. The article really resonated with me, so I retweeted it with the following comment:

My Tweet didn’t sit well with another patient on Twitter, who called it “ugly” and asked me to take it down. I’m guessing he never read the article to understand the context my tweet was written in. Context is everything people. Especially on a platform like Twitter that moves so quickly people often forget to consider it. I kindly responded to him:

In my tweet I wasn’t blasting everyone who used the word “beat” to describe their “fight” against cancer. I just said I “secretly loathe” the use of the word. Everyone is entitled to describe their experience with cancer using any word they like. I happen to personally cringe when I hear the word used, but fully understand that we all need to find words that illustrate and often sugarcoat the process of being diagnosed with and “fighting” this relentless disease - no matter how cliché they may be. We must instill hope into cancer patients by any means possible.

I get that most laymen don’t know the inner workings of this disease, and it's easy to say someone “beat” the disease when they personally didn’t do anything but show up and let a surgeon remove it from their body. In my tweet I was just stating very basic and medically supported facts about this disease.

I have plenty of friends who surgically “beat” cancer, and are counting down the scans until their own personal game of Russian Roulette passes the 5-year mark and they are considered officially cured. It was just their luck their cancer was caught at a stage when it could be cured by surgery alone. And maybe it's just their luck that the adjuvant chemo they did happened to catch that one rouge cell that was ready to take up residence in their liver. Or maybe it was just their luck that any of those rouge floating cancer cells never found a place to bed down and grow. Or maybe it's their bad luck that they did.

Your friend didn’t “beat” cancer by going to Mexico and drinking carrot juice. He was surgically cured of cancer before he went to Mexico. Chris DIDN’T beat cancer because he changed his diet. He beat cancer because he was surgically cured of cancer and happened to be one of the lucky ones who never had a recurrence.

In the end cancer patients, caregivers, their friends, and family need to find words that are going to lift up and inspire them. Use any word you like. Please. Create any metaphor that illustrates the process of managing cancer care that will empower your experience. And if you can do it using Star Wars even better! But read the article and consider the implications your words have for someone who is giving everything they have to knock back this disease in their body with little to no success

If I ever “beat” cancer, I will know it’s not because of anything I personally did. It’s not because of my strength of character. It’s not because I put up more of a “fight” than the next guy. It won’t be because I’m tough or strong. It will be the pure dumb luck of my tumor genetics and their response to chemo and targeted therapies far longer than ever expected or anticipated by any research study.

I have watched too many friends go through the most horrid experiences and pain to stay alive, yet succumb in the end. I think of them when I hear someone use the word “beat” in association with cancer and that's why it bothers me. I feel like it devalues all the crap they went through, and I wonder what antonym we could collectively use to describe all the shit they put up with only to die in the end.


Chapter 2: A Plethora of Pustules and Pimples

As I sat in the exam room at the University of Wisconsin, elated at Dr. Deming's confirmation and recommendation I go back on Erbitux (Cetuximab), my mind immediately when back to that miserable place. In the 5 previous years of treatment before starting Erbitux in November of 2016, side effects had never brought me to tears like this drug.

With all the weekends spent in bed feeling eternally hung over, the throwing up, the hair falling out, the endless trips to the toilet - I just did it. I rolled with it. I took it like a champ. But it never made me emotional. Perhaps because I knew it was all temporary and there was a light at the end of the tunnel. With each round I could resume pretending to be normal within days.

But with Erbitux I never got to the end of the tunnel. Though I woke up every day feeling amazing, the pain and misery of my skin was unending. The cracks in my feet and fingers were not going to heal. No amount of exfoliation was going to make my skin smooth. And my face was never going to be clear, fair, or not hurt. Getting out of bed to walk to the bathroom became a painful chore. Trying not to bump my infected toes into anything became a chore. Putting my compression garment on without my fingers bleeding all over it became a chore. 

Despite feeling great, my quality of life sucked.

On the 4 hour drive back to the Twin Cities from Madison, I prepared myself with one of those "It’s Not That Bad" pep talks, when it really was that bad. It was the only time in 6+ years I’d cried in an oncology office, in front of an oncologist (and nurse, and pharmacist, and volunteer) because I just couldn’t deal with it anymore. And now I was eager to do it again? Eagerness comes easy when you don't have a choice.

As I drove, I tried to rebuild the timeline of my treatment, and associate the severity of the side effects in monthly increments. It wasn't until I'd been on it past 6 months that my skin deteriorated to the point of no return, so I knew I had some manageable time. I would also not be adding in the oral chemo Xeloda (Capecitabine) - which most likely exasperated the horrible condition of my hands and feet given it causes hand and foot syndrome

When an oncologist at Mayo Clinic describes you this way, you own it.
The next day I spoke with my oncologist at the University of Minnesota, who readily agreed to this plan. I think he knows I'm "well read and sophisticated" (according to the oncologist I met with at Mayo) enough to direct what's best for my own care and treatment. He made arrangements for me to start back up on Erbitux. Today I'm taking a few more long looks in the mirror, and admiring the one toe nail that has almost fully grown back in before heading into treatment number 145.

Meanwhile, I looked at Merrick the other day and said, "butt flakes." His eyes grew big, he through his hands in the air, and ran from the scene! Butt flakes is a term he coined for the dry skin that would fall to the toilet set every time I pulled down my pants to sit. No matter how much exfoliating and moisturizing I did, my skin was cracked and dry. Every night when I'd undress, I could see the dry skin fall as my clothes were peeled off. My lack of fingerprints make me an ideal partner in crime, but the amount of DNA I'm about to start shedding will land us both in the slammer.

I remind myself that side effects are a battle we cannot win. All we can do is tend to them.

For more information about managing the side effects of EGFR-inhibitors, download a copy of Fight Colorectal Cancer's newest guide to skin toxicity. There's even a little blurb in there from myself, and the infamous photo I took of my rash-covered face on National Selfie Day in 2016.


Just Call Me a Badger for Now

After the door shut at Mayo, and with no immunotherapy combination trials at the University of Minnesota, it occurred to me that I could also look at the University of Wisconsin. It's a 4 hour drive from the Twin Cities, and one I'll be making soon enough to visit my boyfriend on a very regular basis when he returns from his sabbatical hiking the Pacific Crest Trail.

I logged back into the Late Stage MSS-CRC Clinical Trial Finder and searched in Wisconsin. Much to my surprise an immunotherapy combination trial popped up at the UW Carbone Cancer Center, and I was pleased to see it was being running by Dr. Dustin Deming. I knew of Dr. Deming from his work with Fight Colorectal Cancer and as a member of their medical advisory board. I had watched a webinar he hosted, and seen him speak in Washington, D.C.

I emailed him right away, told him a concise version of what had happened in the preceding months, and told him I was interested. He responded right away, told me to hold off on starting Lonsurf, and to come see him on Monday. So I did!

Of course I was full steam ahead on this one, but decided to take the detour on Thursday to hear about the mad cow rabies disease virus trial at UMN. Knowing doors can close just as quickly as they open, I need to keep all options on the table here.

I appreciated his honest feedback, and advice and insight on my options and next steps. He gave me a peak into the clinical trial world, and explained to me how my treatment choices past and present could and would impact my eligibility for a trial - most specifically the trial he had open.

For reasons I won't get into, I technically wouldn't qualify for his trial. But he said he could probably write my application in such a way to squeeze me in if it was necessary. At this time he didn't feel it was necessary for three reasons:

#1: The trial will most like alter its criteria soon enough so there's no need to manipulate me in.

#2: The response he's seeing from his current patients enrolled in the trial isn't so amazing that I need to get in right now. The trial needs more time to show us its goods.

 #3: I need to exhaust all standard therapy options before going on a trial.

I thought I had exhausted them (FOLFOX, FOLFIRI, and Erbitux, the EGFR-inhibitor). And then he brought up some data that I was all too familiar with, having just heard about it in a Fight Colorectal Cancer Webinar. It was data so compelling to me that I brought it up to the oncologist at Mayo - and he gave me a universal "meh" about it. And when an oncologist at one of the most respected medical institutions in the world says "meh," you sort of go with it, right?
Actually slide illustrating this from Dr. Richard Goldberg's ASCO Recap Webinar from Fight CRC.

Here's what was presented in the webinar. Tumors that mutate and become resistant to EGFR-inhibtors (in my case when the Erbitux stopped working) can mutate back and become receptive to EGFR-inhibitors again. Mind. Blown. So what they were suggesting is that horrid rash-inducing, toe nail-removing, cracked finger-causing drug that brought about "significant shrinkage" in my lungs might magically work again? Sign. Me. Up.

The oncologist at the Mayo blew me off when I asked about it, but the oncologist at the University of Wisconsin not only suggested it, but recommended it.

To be continued...


Mad Cow Rabies and Udder Ulcers

My initial pursuit of a clinical trial came to an abrupt end at Mayo Clinic last week. After wasting a few months thinking my oncologist was taking the next steps for me by communicating with an oncologist at Mayo, it was made clear (much to my frustration and disappointment) that nothing was happening beyond some friendly professional exchanges and the talk of enrolling me in a "quickly filling trial."

It wasn't until my infusion room pharmacist got involved, made a call, and put me on the right path that the ball actually got rolling. I learned my first lesson in clinical trial advocacy - pursue it yourself.

Initially I was only mildly annoyed at the wasted time, and that annoyance was magnified ten fold last week when I finally made it to Mayo, only to be told that the trial they had been discussing filled its last slot only days before. The door at Mayo closed as soon as I had opened it.

Had my oncologist instructed to me to call on my own behalf back in February, and register as a patient at Mayo to initiate the clinical trial process, I would have been in that trial now.

I walked out of Mayo with a total buzz kill, and the next standard therapies being my only option. Those being Lonsurf and Strivarga, and they are not cancer killers. They are simply meant to enforce stability - meaning prevent the tumors from growing and prolong life. I liken this to treading water as long as you can before you tire out and drown.

That was Friday.

On Thursday morning I woke up to an email from a clinical trials nurse at Masonic Cancer Center at the University of Minnesota. This is where I'm treated, and my oncologist had referred me to her for a phase 1 trial involving a virus. In this case, a virus I'm now referring to as cow rabies because that's essentially what it is.

The concept is simple. They inject a genetically modified virus into your tumor, your immune system sees the virus (though it still can't see the cancer), enters the tumor to attack the virus, realizes it's in the midst of cancer, and attacks the cancer as well. This trial had phenomenal results in the fancy little (genetically modified to mimic the human immune system) mice, but so far has fallen a little short in humans.

And since everything at my house can be illustrated with Star Wars, it's like Luke chasing a Tie Fighter onto an unknown planet. In this hypothetical scene, Luke is so focused on pursuing the Tie Fighter, that he doesn't realize he actually stumbled upon an Imperial base. Once he realizes it, he calls for backup and starts to attack.

The perk of the trial is it's only 43 days, and there's always a chance I could be one of the few that actually does see results from it. Should it not work, I could move on to the next option, and in 43 days the next option may open up. They are specifically interested in filling slots with colorectal cancer patients, so there's a bed with my name.

My decision to proceed with this trial comes down to one more meeting and one more potential trial four hours away at the University of Wisconsin. I'm hopeful decisions will be made in the coming days, as there's a dose of some mad cow rabies disease (that will cause a rash on my udders) waiting for me at the University of Minnesota.


Immunotherapy as a Star Wars Movie

Before I start going off the deep end with my pursuit of a magical clinical trial, let me break down immunotherapy and immunotherapy combination trials to a 4th grade level. Or better yet, in terms of Star Wars, since this is how I explained it to my young Padawans.

As Mick (my almost 5th grader) will gladly tell you, cancer is just a bunch of normal cells gone bad. Sounds like the Republic, huh? Cells have an off switch and know when to stop growing, unless the pull of the Dark Side is too great. This is the case for cancer cells. A switch has been flipped and they continue to grow until they have taken over the galaxy.

Normally your immune system (the Rebellion) would see these cells growing when they shouldn't be, and rush in to destroy them. But like the Republic, cancer is a stealthy bastard and uses a force field to make it invisible to your immune system (the Rebellion). Immunotherapy works by sneaking on board a Star Destroyer and deactivating the force field, enabling the Rebellion to see it, and sending in X-Wing Fighters to destroy it.

Immunotherapy breaks down cancer's ability to hide from the immune system, the immune system sees it, recognizes it as a foreign invader, and attacks and kills it like it's perfectly capable of doing.

In my world of colorectal cancer there are two types of tumors: MSI and MSS. In keeping with the 4th grade level here, I'm not going to explain the two, other than to say that roughly 10-15% of colorectal cancer patients have MSI tumors - which have responded well to immunotherapy trials. The rest of us schmucks have MSS tumors, and we don't respond to immunotherapy alone.

Enter a combination therapy. The general idea behind combination therapy is the immunotherapy gets the Republic to drop its force field, and allows the Rebellion/chemo/cancer drugs to do their job far more effectively with far less work.

At this point I'm awaiting a combination clinical therapy trial to open up and biding my time by revisiting current standards of care I've already been on. The trials I seek are our there, just not at one of the three National Cancer Institute comprehensive cancer centers in my backyard (University of Minnesota, Mayo Clinic, or University of Wisconsin). And as I continue live with my "good stable disease," there's no panic to start the first trial that comes alone. Given the exclusion criteria that can potentially exclude me from future trials, I feel I must be very careful before venturing out on the barren planet of clinical trial Hoth with my Tauntaun.


A Cancer as Taboo as Poo

In March I wrote a guest blog for the very people that make pooping in public possible - Poo-pourri. If you follow me on Twitter, you'll know all about my undying love for a product that changed my life and the way I poop. I've introduced so many to its magic, and to this day most will freely talk about that first life-changing poo with Poo-pourri in their loo!

March was Colorectal Cancer Awareness Month, and as passionate as I am about raising awareness for this largely preventable cancer, I'm even more passionate about raising awareness about the drastic rise in young onset colorectal cancer.

Poo-pourri gave me a chance to write about poop for an audience that was already clearly comfortable with the topic, but perhaps not as comfortable as I was about to make them.

CLICK HERE to go to the guest blog on Poo-pourri's website, or just read below.

A Cancer as Taboo as Poo

Cancer: that dirty little word that’s almost as taboo to say as poo. But what happens when cancer has everything to do with poo? 
Each year, over 10,000 young adults are diagnosed with colon cancera number that is on the rise and expected to double in the next 15 years. For these unsuspecting under 50s, poop isn’t just a part of lifeit becomes a way of life.
Most people associate colon (or colorectal) cancer with the over 50 crowd given the current recommended screening guidelines. And that’s the catch, colon cancer can be largely prevented through screening. With the sharp rise in people under 50 having a cancer associated with their grandparents, there are clearly going to be those impacted by colon cancer that don’t fit the current screening recommendations.
As much as we are preoccupied with the smell of our poop, we should also be engrossed in the appearance of it. That’s right, turn around and take a good long look at what’s in that bowl; it may be trying to tell you something.
The size, shape, color, consistency, and even ease (or lack of ease) with which it departs your other end says a lot about your health. Its delivery from your backside can speak in more ways than just noise. Every person has their own “normal.” But when is it not normal? And when does it mean it’s time to call up the good ol’ doctor?
The most commonly reported symptom of colon cancer is blood in the stool. (This is that part where we remind you to take a good long look at the deposit you’ve just made in the Porcelain Bank)
Blood in your stool (or on the toilet paper) is not normal. Regardless of its source, it shouldn’t be there. If you see it talk to a doctor about finding the cause. Now before you pull your pants up a little higher and buckle your belt a little tighter, remember that it’s all in a day’s work for these tried and true physicians of poo (aka: gastroenterologists).
Another warning sign? Any time there is change in your “normal” bowel habits take note. When the change doesn’t change back, it’s an indicator that something isn’t right. Is it thinner? A different color? A different consistency?
“Because we’re young, our symptoms are often ignored when we do go into the doctor,” says Vanessa Ghigliotty. Diagnosed over 15-years-ago at age 28, Vanessa has been working tirelessly since to advocate for colon cancer in young people. “Even when we want further tests, we’re told no because we’re too young to need it. Being proactive about our health often isn’t enough to get the diagnosis we need. Even when we know something is wrong, we are still having to fight to do what’s right for our bodies.”
It’s also important to ask your family about their health history. Maybe not during a Thanksgiving feast, but take the time to learn any history of colon cancer or polyps in your family.
“Believe it or not, your family’s history with colon polyps and colon cancer can put you at risk, and may even mean you need to be screened below the recommended age of 50,” says Stacy Hurt, who was diagnosed with stage IV rectal cancer when she was 44. “Knowing your family’s history is so important. My dad had polyps removed but he didn’t think it was ‘a big deal,’ or that it would affect me. Have those discussions with your family members so you can be proactive.”
So what’s a concerned college coed to do? How can a tired thirty-something take action if they’re concerned about their poop?
Don’t be embarrassed. And don’t ignore the symptoms. If you aren’t satisfied with the response you get from one doctor, get a second opinion. If symptoms don’t improve, continue advocating for your own health.
Look at your poop, know your poop, and listen to you poop. It may be trying to tell you something important to your health.
      • Studies have reported increasing colon cancer incidence in adults under 50, for whom screening is not recommended for those at average risk.
      • Colon cancer has been increasing in the United States among adults younger than 55 years since at least the mid-1990s.
      • Those born in 1990 have double the risk of colon cancer and quadruple the risk of rectal cancer. 
    For more information about signs and symptoms, and young onset colon cancer, visit www.coloncancercoalition.org.

    Poo-pourri: Never leave home without it.


    Let's Get Clinical, Baby

    There’s always an ongoing conversation in the cancer world amongst researchers, physicians, and medical professionals about clinical trials and how to engage more patients and get them to sign on the dotted line.

    As it stands, less than 5% of cancer patients are currently enrolled in a clinical trail.

    And the big mystery is why more patients don’t sign up for them. There are some very distinct reasons I won't get into here, but I'll at least give you a few from my own observations.

    I think part of it has to do with patient self-education. I’ve sat in enough infusion rooms to know that most cancer patients are older, and probably completely reliant on information and recommendations from their oncologist. I'm going to assume this is a product of their generation, and not growing up with the innerwebs at their fingertips. Granted, I technically fit into that category having somehow graduated from college by using books in a library and the card catalog to complete papers. And being (mostly) reliant on your doctor's advise is fine considering that they can spell all those big, scary technical names for cancer drugs and I can't even spell at a 5th grade level.

    I am of the computer generation that doesn’t have to rely on Encyclopedia Britannica anymore for the latest and greatest information. I’m also connected to the latest and greatest discussions about clinical trials for my tumor type in a clinical trials group on COLONTOWN.org. I’m the girl that walks into my oncologist’s office with a spreadsheet of trials I found on trialfinder.fightcrc.org enrolling in Minnesota that are for my tumor type, and he’s the kind of oncologist that lights up with excitement that I’m finally ready to consider a trial. 

    For the last 2 years, he’s been eager for me to try an immunotherapy combination trial, and has always told me I’m just biding my time until the trials come around. And they have indeed come around. I appreciate having a young, progressive, and brilliant oncologist in times like this.

    I think part of it has to do with clinical trials getting a bad wrap. I’ll admit, prior to entering the cancer patient world, I assumed that all clinical trials involved an actual drug vs. a placebo. And when you’re already playing Russian roulette with your life, why risk the placebo. That’s just not the case - at least for cancer. All the patients in a trial get some good ol’ drugs, and the trials can vary from amount of drug, and often drug combinations. But nobody goes without. 

    I think part of it is the association of clinical trails being a last ditch effort or a clinical Hail Mary. I’ve watched as many of my peers have indeed waited until they had failed all FDA-approved cancer drugs before moving on the clinical trials. I truly believe that every patient's treatment path is their own choice, and can completely understand this one. Why risk something that hasn’t been clinically proven to the point of getting the FDA stamp of approval, when you can try all the drugs that are currently on the market.

    I think part of it is also the fear of the unknown. Why try a drug that may or may not work, when I can try a drug that has at least worked enough for the FDA to let it merge onto High Street. But the truth is, an FDA approval doesn’t mean it’s going to work for any given patient. After all, I've been living on chemo with my "good stable disease" for the last 6+ years, while I've watched my comrades continually fall to the side of the road on the very same drugs. I tend to think that rolling the dice on a clinical trial may be just as risky as starting a new, already approved drug.

    Last Friday, I sat down with my oncologist and we began the search for a clinical trial for me. And before you think there’s a panic at the disco or things have gotten dire, rest assured they haven’t. I’m in a better place with my tumors than I was a year ago, and feel like there’s no better time than the present to go on a clinical trial. Here's why:

    • Because of the great results I got from my 13 months on Erbitux, I’ve “bought myself some time” with my now smaller tumors. That was the remark I made to my oncologist when we were doing a side-by-side comparison of my lungs from over a year ago, but he didn’t find it as humorous as I did (and he actually has a good sense of humor).
    • I’m health has a horse. Or a least a horse that happens to have cancer. To qualify for most trials, you need to be relatively healthy from top to bottom. I’ve watched many a friend not qualify because various numbers and organs were not up to par for the trial criteria.
    • I still have 2 FDA approved drugs for colorectal cancer to fall back on.
    • I have faith in the excitement my oncologist has had over the last 2 years over me and an immunotherapy trial. This man knows me, knows how my tumors respond, and believes this is where my HOPE should be.
    Currently he’s looking into one trial at the University of Minnesota, and several down the road at Mayo. Meanwhile I’ll miserably bide my time on my old friend Oxaliplatin, and get back to you later to explain what I mean by “tumor type” and “immunotherapy combination trial” in my simple layman’s terms with my 5th grade spelling abilities.


    The Ox is Back, Baby

    Two things I love right now, room temperature
    water in a Dodgers cup and Lorazepam.
    What a difference 6 years can make. I'm not sure why I was never given the amazing anti-nausea drug Emend my first year of chemo, but based on my love affair with a yellow bucket my mother left next to my bed after every treatment, it was clear I wasn't.

    I spent my first reunited romantic weekend with my old lover Oxaliplatin pretending we did nothing more than drink too many margaritas the night before and were meant to lay around the house all weekend working off a mild hangover. This is the way chemo should be. It was very much the way I managed those 3+ years on FOLFIRI - functional and alert, but not eager to wear normal clothes or leave the house.

    With nausea kept at a minimum, and just slight bouts of klutziness that left me falling down the stairs just once, I deemed my return to the criminally hard chemo doable for as long as it does what it needs to do.

    I know the drill with room temperature drinks and bizarre sensations (or lack their of) in my hands and toes. But considering my skin is well on its way to flawless and smooth, I'll take it. All in all I'd say each of my side effects makes me appreciate the other, and right now I am so happy to see a (sparkling) completion, (almost) healed fingers and feet, nails that have stopped oozing and falling off, and skin that doesn't resemble a dry lake bed.

    The plan calls for chemo every 3 weeks. As I'm remaining on the oral chemo, its cycle dictates this one. My official chemo combination is called XELOX (Xeloda + Oxaliplatin), and for now we shall pretend to like each other.


    Lorazzies Make Everything Better

    By my third round of chemo, I found myself wanting to dry heave in the parking lot. I would panic as I walked toward the infusion room, playing connect-the-dots between every trash can, sink, and bathroom - should the heaving suddenly get real.

    I'd lunge for the overpriced recliner nearest a trash can, put in my ear phones, turn Mumford and Sons up as loud as I could, and close my eyes so I could mentally remove myself from that room. I had to go far away from that place in an attempt to suppress the overwhelming urge to throw up.

    The caregivers bringing in fast food to their patients sitting next to me didn't help.

    I confided my odd reaction to my oncologist, and he quickly diagnosed my ailment as "anticipatory nausea." My mind was anticipating the nausea that was coming, and freaking the f*ck out on me. My nurse dumbed it down, and simply label it as anxiety.

    I had never experienced anything like it in my life, and was shocked at how physically overwhelming it could be. I became mentally and physically paralyzed in my ability to move past my pending infusion.

    From the start of my treatment, I was prescribed a drug called Lorazepam to manage my nausea: Take 1-2 pills every 4 hours for nausea.

    Three rounds in and my nurse was telling me this same drug was used to manage anxiety outside of the cancer world, and simply popping them before I left for chemo would most likely put a halt to my parking lot heaving. It would probably make me want to curl up in that same parking lot and take a nap - a power that would prove useful at 3 a.m when the steroid infusion left me wide awake.

    She was right. I waltzed into my next round chiller than a wine cooler in an ice chest, and I became not just a believer in anxiety, but a believer in the drugs available to treat it. I also walked in with a newfound empathy for every person that had anxiety, and knew there was no shame in admitting its overwhelming control over me.

    Though I've not had to face anxiety in the last 13 months on a treatment that did not make me sick, I found my familiar friend knocking on my door the moment it was decided to resume the treatment that taught me how sick chemo can truly make you. The nausea wasted now time, and started to overtake me right there in my little infusion room. Anxiety was back, and I found myself digging up leftover (and probably expired) pills to help me calm down and get through the remainder of the day.

    I do not hesitate to take one when the thought of being sick again triggers that "anticipatory nausea." I know I will need those tiny white wonders to knock it off of my back, and continue on.

    Facing cancer is daunting, and needing the help of drugs that can help keep the ship steady and moving forward is not shameful. Down the hatch one of these will as I walk out the door next Friday, and down the hatch another will go once I arrive at my infusion. Cheers to these little white pills, and the peace and calm they will bring to my mind, my body, and most likely my already low blood pressure.


    Crappy Relationships are Better than Abusive Ones

    Have you ever dated someone that made you feel like crap, and when the relationship ended it was such a relief?

    Why would you ever consider dating that jerk again?

    Especially when you swore them off for good.

    Next week, I’m starting up a relationship I ended 6 years ago. One I swore I NEVER wanted to get into again. But given that my hands and feet are so cracked and painful from my current EGFR-inhibitor treatment, and my quality of life has been suffering for months, I’ve decided being in a really crappy relationship is better than being in an abusive one. 

    Especially when the really crappy one is really only crappy about 6 days out of the month, and the abusive one is bad every day, all day.

    I’m going back on Oxaliplatin, the nasty part of the very drug combination (FOLFOX) I was on my first 12 rounds of chemo that made me spoon a bucket in a dark room and numbed my fingers/feet.

    After 13 months on Erbitux, I’m thrilled to report it’s still working. I am still more than responsive and more than stable. The problem with my prolonged use is its toxicity to my skin has long reached a breaking point. My hands and feet have become so cracked and painful I find myself avoiding and dreading things like laundry, dishes, and taking out the trash. Not that we all love these daily activities, but for me they resulted in bleeding figures and a hobbled walk on the 20-some bandaids it took to even make walking possible.

    I went into chemo last Friday armed with an handicapped parking pass application, and completely lost it when my beloved nurse asked me how things were going. I know I was worn down and emotionally volatile just trying to get painfully dressed every morning. I didn’t realize I was on the cusp of falling apart completely.

    And fall apart I did. In front of her, in front of my pharmacist, in front of my oncologist who came into my room, in front of the volunteer who unknowingly walked into my room, and in front of the scheduler as I reworked myself into a bi-monthly schedule.

    The last few months have been a daily struggle, and I found it easier to stay home in my pajamas when I could, rather than face the (literal) bloody battle it would take to get my compression garment on Fat Lefty, clothes, and shoes. I dreaded my nightly showers due to the extreme scrubbing of cracked, dry, peeling skin, and the gobs of cream I’d have to coat myself in just to try and fight the painfully dry skin that resulted from my treatments. Skin that would inevitably be cracked and flaky again within 24 hours.

    I found it surprising that my skin issues, not nausea and sickness, are what ultimately impacted my quality of life. I know that feeling like I have a bad hangover every other weekend is temporary. Within days I'll be back to normal, and doing life's most basic chores will no longer be a dreaded chore.

    My initial plan will be to do this until my skin can recover and enjoy a nice break. It may mean needing to reassess at my next scan, but for now I'll enjoy a smooth, clear, non-furry face, and being able to paint my nails again. I'll also appreciate not spending an extra $50 a month on cream and bandaids.