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 the kids. This is how I explain most things to my kids.

As Merrick (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. They're out there, just not at one of the two National Cancer Institute cancer centers in my backyard (University of Minnesota or Mayo Clinic). While I wait, I shall sit on an oral chemotherapy called Lonsurf. It's not meant to shrink my sexy lung mets, only keep them stable while I bide my time.


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.


    Taking the Boy to Huntsville

    I had an amazing opportunity to take Merrick to Huntsville, Alabama and the U.S. Space and Rocket Center. For my bonafide space nerd, this is what dreams are made of. And this dream was made possible with a grant just for kids with a parent or caregiver in treatment for colorectal cancer, or who has passed from the disease.

    Our trip got the attention of a news editor with AL.com, and this article is the result:

    I also wrote a guest blog for The Colon Club - the organization that makes The Kimberly Fund possible. We were grateful they gave us the chance to head off for some mother/son bonding over Saturn V and missions to Mars.

    Creating Experiences to Last a Lifetime
    Guest Blog for The Colon Club

    On the night I was diagnosed, I came home and nursed my baby boy to sleep through uncontrollable tears. As is the case with most babies, he was obsessively in love with me and I with him. My only thought as I stared down at him was if I would live long enough for him to know how much I loved him. I couldn’t help but wonder if I would die before he and his older brother would be old enough to remember me, and I wondered how could I love them enough then to last a lifetime if was not there.

    As I tackled my diagnosis, surgery, and the lifetime of treatment ahead of me, I knew I needed to shift my parenting priorities around and work hard on not only loving them enough to last that lifetime, but creating the life moments that would lead to lasting memories. I needed to focus less on things and more on experiences, and I needed to pour into them the moments that could ultimately shape the men they might have to become without me.

    One day my oldest came home from preschool passionately clutching a NASA bag in his hand, and quickly spread its contents on the floor. An engineer from a nearby NASA facility had visited his class, and my little boy who loved LEGOs, puzzles, how things worked, and anything that flew realized his future. He wanted to build things that went to space.

    With my new found focus on parenting, I set out to encourage and build in him this interest in space and evident talent for engineering. He spent a week at Johnson Space Center in Houston doing a robotics camp, and I took him to the California Science Center to see the Space Shuttle Endeavour – where we made a pact to see the other three shuttles on display around the country. There were books, movies, documentaries, planetariums, and engineering classes to add fuel to his fire. We followed the path of the International Space Station, kept up with the astronauts living on it at any given time, and even had the chance to meet former ISS Commander – Col. Chris Hadfield from Canada.

    In a chance meeting on Instagram, I became friends with Chip Moore, a fellow stage IV colon cancer patient who happened to work for NASA at Marshall Space Center in Huntsville, AL. He would post the occasional cool photo from work, and I’d always make sure my future aerospace engineer saw it. It was a causal invite from him to visit Marshall Space Center that got my wheels turning toward my son and my quest to parent by way of experience.

    What would I give to get my boy in front of real rocket engineers! Men and women that crunched numbers, determined trajectories, and contributed on a daily basis to the U.S. space program and our future mission to Mars. I knew it would be the very experience I wanted to give him as part of my “pour into them now” parenting plan. But in the midst of medical bills and other exotic memory-making vacations, setting aside the time and money to take Chip up on his offer wasn’t a priority. As much as I wanted my son to see a place full of so much space history and innovation, I also wanted to take him on our annual family trip to Cayman, and pay for those dive lessons he was finally old enough to take.

    While talking with Colondar featured survivor Doug Dallmann about this standing invitation to NASA, he told me about The Kimberly Fund and encouraged me to apply. He knew the sacrifices my boys have to make growing up with a mom that has cancer. My oldest alone has been to more chemotherapy sessions with me than most cancer patients themselves will ever go to. The Kimberly Fund was the opportunity to not only expose him to what his future could be, it would provide us the chance to spend time together outside of the infusion room. Hanging out with mom doesn’t always have to be cancer related. The grant was exactly what I needed to get my boy to Huntsville, AL, and this invitation to visit NASA and the U.S. Space and Rocket Center was just the experience The Kimberly Fund was set up to provide.

    As I continue on with endless treatments to keep my cancer stable, I will continue to look for those invaluable experiences that shape the way I parent now. But this trip to Huntsville was an experience that would not have been possible without The Kimberly Fund and The Colon Club, and for that I’m grateful. It provided me with an amazing opportunity to see my son light up with inspiration, and forget for a few days that cancer ruled our world.

    If you are a parent or caregiver currently in treatment for colorectal cancer, or know a child that has lost a parent to this disease, I encourage you to look into the The Kimberly Fund. For more information, visit: www.colonclub.com

    Admiring Saturn I.
    Apollo 16 Command Module "Casper."


    Unsympathetic Sighs

    I’ve always said having to deal with cancer while raising young children trumps all in the world of adult cancer. A friend of mine passed away this morning from this disease, and the little miracle girl she and her husband spent 19 years hoping for will now grow up without her mommy because of colon cancer. Everyone within spitting distance suffers from the loss, but it is utterly unfair that these children have to suffer or have their innocent childhoods altered.

    View from my chemo chair.
    You’d think after 6 years and having (now) school-aged kids that I would have worked most of the kinks in this “parenting with cancer” business out, but I haven’t. Friday was another example of why there will always be bumps in the road reminding me that managing this disease often requires additional hoops to jump through - and heartache to battle.

    I still flash back to my first year of chemo, when I shared an alcove in the infusion room with a group of middle aged men fighting prostate cancer. Every time I walked into the room, I wanted to yell at them as they sat in casual conversation with their companions. There I was trying my best not the throw up due to chemo-induced anxiety, as they sat there waiting for someone to bring them a fast food lunch that would surely send my teetering stomach over the edge.

    I wanted to point at them in accusation, knowing they were sitting at home in their recliners the night before watching Wheel of Fortune while I was at Target buying enough diapers, wipes, and baby food to last me the next week while I recovered. They looked like they hadn't a care in the world, while my heart and mind were always burdened with the care and concern I would not be able to give my boys in that coming week.

    This week the scheduler(s) in my infusion room scheduled me for an early infusion, despite my continued reminders that I can't come in until I've dropped the boys off at school. When I called to reschedule, they didn't have any later appointments available, and the scheduler I spoke with made no effort to accommodate my "special situation." All I got out of her was an unsympathetic sigh and zero empathy.

    And by special situation, I mean that unlike 95% of the people in the infusion room, I'm trying to juggle this all while parenting young children. Parenting when you're just a normal person is stressful, parenting in the midst of cancer and chemo is like the icing on the cake of cancer stress.

    I hung up and lost it. I’m rarely emotional in general. And rarely emotional about all this cancer business. But when someone doesn’t have just a little bit more understanding for me because I’m managing my care around raising these boys, it flips the emotional switch that reminds me how much harder it is for me and anyone other parent in my shoes.

    Despite being a frequent flyer, I’m not asking for first class treatment in the infusion room (or from the boy's teachers as they waltzed in to class late because they had to go to chemo at 8 a.m. instead of school). Just a little more grace and a few less unsympathetic sighs. My juggling act has a few more balls thrown in the mix, so please be helpful as I try to manage my disease. I don't need to be reminded that this sucks.
    He got to eat infusion room cookies at 8 a.m. and be late for school. Sounds like a pretty good morning for him.


    Here When I Know I Shouldn't Be

    It's that time of year where I tell you I'm still alive.

    It's my cancerversary, and I have defied the odds for another full calendar year.

    I have now lived for 6 glorious years with cancer in my body, and the most exciting news to report is that I'm a tiny bit less cancerishy than I was last year.

    This news comes after my oncologist did a side-by-side comparison of my lungs from a year ago, when I jumped off the slowly sinking U.S.S. Irinotecan and onto H.M.S. Erbitux.

    Despite my current "stable" scan, he was impressed to see Erbitux really has done some damage to more than just my face (skin, toes, feet, and finger nails). After we both stared at two noticeably different scans, I turned to him and yelled, "See, I've bought myself some more time!" to which he was not amused. I can't help but have a morbid (but realistic) sense of humor when living with metastatic cancer, and I don't think he shares my sarcasm for this disease.

    I'm sure I've written about the lack of irony that this day falls within the Thanksgiving season. This year it falls on Thanksgiving. I live in complete humility because I am here when I know I statistically shouldn't be. Though I am technically fighting for my life, I don't live every day fighting like so many of my compatriots do.

    As I do everything Thanksgiving, I will think of my friends who will not pull up a chair at the table this year, and their families that will struggle to give thanks amidst that void.


    Toenails are Overrated Anyway

    Over the years I'd heard all the rumors about Erbitux. It's one of the tried and true chemotherapies for colorectal cancer, and in a family of other chemo drugs called EGFR-inhibitors. Though I'm sure I've explained already, let me refresh your memory. Epidermal Growth Factor Receptor-inhibitor drugs destroy anything epidermal (skin, nails, skin, skin, nails), and the one side effect I had heard stories about was the "acne-like rash" that I happened to be blessed with (and am still being blessed with to the extreme at this moment).

    Though the initial pain and rawness has subsided since I started last year, the cracked, ashy dry skin has not. The rash ebbs and flows with a rhythm I have yet to decipher, and the demise of my hands and feet has me wishing for days when a little pedicure was all I needed to feel like a girl again.

    I knew going in that my hands and feet might suffer, and my nails could get infected. I diligently cared for them every night, and worked foot creams, fuzzy socks, and ointments into my nightly routine with my damn lymphedema. As with most attempts to counter chemo, my efforts were useless to combat side effects.

    As my toenails started to ooze, I continued to think that my own self-care would be enough. And like most problems in my life, I'd just fix it myself. Damn ornery women! Only my fixing wasn't working, and the condition in my toenails got dire. So dire that I landed myself a stay at the Casa de Hospital over Mother's Day weekend for some IV antibiotic and a horrific procedure on my toenails that could only be soothed with some OxyContin. Nurses at the other end of the building later stopped by to say the could hear me screaming (foul words) throughout the halls.

    This is about to get mildly graphic, but only so I can make a point that chemo isn't just baldness and puking. I feel like a million bucks with a head full of hair, but what you are about to see has been my plight in life since I started on Erbitux last winter.

    Apparently EGFR-inhibitor chemo can also cause your nails to split, come off, and become ingrown. And this leads to infections that little Miss Fix-It-Herself can't make better. Since that fateful Mother's Day, I have had to have my toenails tended to on two more occasions, and I know my podiatrist hasn't seen the last of these beauties. We're on a first name basis, and she always gives me permission to cuss like a sailor as she injects abnormally large needles into my toes.

    So here's proof that chemo isn't just about losing your hair, being sick, or throwing up. I have a head full of oddly curly hair, and feel amazing. After 5 years of feeling like crap, I remind myself that toenails are indeed overrated, and I just need to put on my big girl panties and deal with it.
    It was the summer of bandaids, blood, and dry, cracked feet.
    Round 1: Having already had needles injected between my toes early in the year, and can only tell you that the words that came out of my mouth this time would make a sailor blush.

    Round 1: Only mildly noticable in this photo, the main indicator that this infection was out of my control was the uncontrollable swelling in my left leg. As the lymphatic system helps us deal with infection, Fat Lefty was no match for the war that was raging in my left toe and got pissed. It took me all summer (wrapping 24/7) to get him back down to his "normal" lymphie size.
    Round 2: Having experienced the worst pain in my life when she injected my toes in this hospital, my caregiver pinned me down and said I could squeeze him until he bruised to get through it again.

    Round 3: At this point my podiatrist knows me by name, and said I was free to scream any foul words I liked as she injected my toe AGAIN. If my nail could give me the middle finger, this is what it would look like. I'm painting the rest of my nails black to match.
    Most of my nails have peeled back and broken off leaving me with useless nubs.
    Useless nubs that like to bleed when I try to make them remotely useful. In this case, I reached into my bag to get my keys.
    And despite the cracks in my feet improving now that I'm not wearing flip flops all the time, any attempts at exercise (and in this case a short hike) result in blood blisters. Good times.


    Live Moore

    A young couple came up to me at the park while I was wrapping up Get Your Rear in Gear - Portland back in August. They had been out for a hike, and asked someone what our event was about. It turned out they had just lost a friend to colon cancer, and wanted to donate to our cause in his name. 

    They proceeded to tell me about Live Moore Co., something their friend Matt had started after he was diagnosed with colon cancer at 32 - even pointing out a hat one of them was wearing with the logo. I came home and immediately went out in search of this Live Moore Co. they spoke of, and reached out. Within a day I'd heard back from Matt's widow Nikki, and knew that meeting in the park was kismet.

    I'll let you read Matt's story as part of the Colon Cancer Coalition's Faces of Blue, encourage you to check out www.livemooreco.com, and of course want you to embrace Matt's message to #livemoore.

    There continue to be far too many young people dying of this disease, and all because they are below the current recommended screening age, don't know the signs or symptoms, are written off when they do go to their doctor with concerns, and are clueless that they can even get colon and rectal cancer while young and healthy.

    Matt's son Cullen is yet another child that will grow up only knowing their dad through photos and videos because of this damn disease, and that is a tragedy we must work to stop.

    Read Matt's story here: http://coloncancercoalition.org/2017/10/11/faces-blue-matt-moore/


    The Colon Cancer Podcast

    A few weeks back I was interviewed by fellow stage IV colorectal cancer survivor Lee Silverstein for The Colon Cancer Podcast. As much talking as I do about living with metastatic disease and sharing of my story, I have to say it never gets old.

    And not just because I like talking.

    It never gets old because there are so many aspects over the 5+ years that individually breech someone else's own experience. Be it my postpartum diagnosis, my living long-term with active disease, my development of lymphedema, or my managing to (sort of) parent (mostly) well-behaved and well-balanced boys through it all.

    But the one subject Lee wanted to talk about was one that isn't often talked about in the midst of crisis of any kind, and one I finally talked about a few blogs back - the impact cancer (or chronic illness or crisis) can have on a marriage. Be it the stress cancer can bring to an already stained relationship, or the realization that life is too short to be unhappy - the topic of marriage and relationships is one often swept under the rug when people are merely trying to stay alive.

    I was grateful to have a chance to talk to Lee, and continue airing more of my dirty laundry in hopes that my story and my experience would let others know they are not alone in their thoughts, feelings, and struggles.

    Have a listen.


    National Selfie Day

    It’s National Selfie Day, and as someone who does social media for a living (but isn’t exactly the queen of selfies), I had a good long think on the number of reasons I would not be posting a selfie today - and the winner, winner chicken dinner was clearly the current state of my unedited face. 

    Put away your Kim Kardashian beauty editing app, because it ain’t gonna help this hot mess.

    I am now 3 weeks into the throws of a chemo-rash that far surpasses anything I dared complain about at the start of this regime 6 months ago. There is no logical medical explanation for why it has returned, and returned with such a vengeance. It currently looks like chicken pox mated with a swarm of Amazon-bred mosquitos and gave birth on my face.

    I just want to hide.

    The general idea behind EGFR-inhibitor chemo is that you get a rash (and cracked bloody feet, nail infections, nails that have to be removed because of those infections, infected eyelids, cracked skin that has to be slathered in heavy cream twice a day, facial hair, and scabs on the inside of your nose that bleed if you even remotely try to pick them) and getting a rash is apparently a good thing. The worse the rash, the better the chemo is working. This theory proved correct with my first 2 scans.

    First 3 months = bad rash = significant shrinkage
    Second 3 months = hardly any rash = no shrinkage

    Pending insurance approval for an earlier-than-needed scan, I will have to wait another 7 weeks to find out if this magical plethora of welts upon my face (and infected eyelids) is indeed the neon sign that the rash-inducing chemo has decided to get back to "significantly shrinking" after the half time show break.

    Third 3 months = gawdawful rash = yet to be determined

    So to force myself out of hiding on a day when everyone is putting their prettiest face forward, I'm closing the beauty editing app and putting this out there for all to see. Sometimes airing our dirty little secrets releases the hold they have over us. So for me, I'm going to air out my nasty little face and release the hold it has over me. 

    Happy National Selfie Day. Here's mine.
    Full sunlight with nothing but Aquaphor (and a nice coating of steroid cream to take the redness down) to hide behind. Too bad this isn't 3-D so you could really see the dimension and texture of the my welts. #nofilter


    Mid-Thigh High

    Remember when I had needles jammed between my toes back in February? The results have long been in, I met with my doctor, things are better than most, probably what I expected, and overall I'm content.

    1. I do have lymphedema. 
    Shocking to no one.

    2. It looks like a bulk of the stagnant lymphatic fluid is in my lower leg.
    I knew this just based on appearance and my ability to get away with wearing only a compression sock to the gym. Sure, all day and it starts to really back up around my knee, but I can see the line of my quad muscle in that leg if I stand up, which is not something I can say about my calf. The good thing about this is my doctor gave her blessing to have a custom garment made that stops just above my knee. I think it was a first for her, and a first for the lady who measured me for said garment.

    Said garment arrived, much to everyone's surprise it stays up, and I now feel slightly freer in my workouts without having silicone grips stuck right up under my ass. It's a little tighter than I would like, but with a little extreme stretching, I can hopefully stop walking around with a muffin top above my garment.

    3. I have amazing lymphatic flow in my right leg. 
    She said this wasn't always the norm for someone with lymphedema in one leg. It means nothing to me, but I'll take it.

    4. I am a candidate for surgery. 
    Am I? Technically. Does she advise it? No.

    And it's not that she said I can't, she just said given how "not bad" my leg is, she doesn't think it would be worth the stress, money, time, and pain for results that may not be guaranteed. Most people looking into the surgery hope to end up with a leg that looks like mine. I'm looking into the surgery because I want a leg that returns to normal. Possible? Yes. But worth the gamble? Who knows.

    Because the surgery is not covered by insurance, I would have to put down a little deposit for the surgeon to fight and appeal my insurance company. From others who have gone before me, I know this could be anywhere from $10,000 to $35,000. And guess what happens if all those appeals get rejected? There are no refunds.

    Throw in the $800+ I'd have to pay just for a consultation, plus the travel, aaaaaaand I can see my doctor's point. That's a lot of risk with the potential for no reward.

    So for now I'll be content on not pursuing the surgery, but knowing full well that in a couple of years it may be covered by insurance without the fight, and it may be perfected to the point that I will get perfection. In the mean time, I'll continue obsessively caring for it so that it stays as normal as possible, and appreciating my skinny jeans that fit.

    All the darkness is the painfully injected contrast working its way through my lymphatic system at 1 hour intervals. One calf is clearly not like the other.


    Cancer Either Makes or Breaks a Marriage

    I think one of the first things my oncologist said to us at my very first appointment was, “Cancer either makes or breaks a marriage.”

    In my head I think I sat straight up and felt like a deer in headlights. I don't even think I really heard anything else he said because my mind was still wrapped around the idea that someone in that room may have just told my fortune. Or seen my secret.

    “How can he tell? Is it obvious? Why would he say something like that?"

    That was over 5 years ago. And when I think back, I believe he did know because he could see. I’m sure he’d sat in that room and given the Intro to Chemo and Cancer talk to countless couples. He was surely a good study in human behavior - at least good enough to see the 2 feet of space that sat between Kyle and myself. I’m sure that void spoke volumes to him about the state of our relationship in this time of crisis.

    My guess is couples are physically close in times like that. When you are told you may be dying, you naturally draw close. The emotional, mental, and physical intimacy required of a partnership during the worst possible moment is probably a clear indication of the "for better or worse part" of that vow.

    And yet there I sat in this sterile little room with 2 feet of emptiness between me and the one person to whom I should be clinging.

    As we left that first meeting, I retreated into my many thoughts and the hopeful idea that this, this fucking cancer, could finally be the catalyst that brings my marriage the connection, the chemistry, and the intimacy that I knew a relationship should have. I looked at Kyle and knew he was the right man for this situation and all the nasty, horrible things that would follow. I knew he would take care of me till the end, and I resigned to the the fate of my marriage - that death would probably do us part a lot soon than one anticipates.

    Only death never came, and I kept living. And I lived very much as an outsider to my own marriage. Cancer hadn't brought the "ah-ha" Oprah moment I thought it might. It hadn't been the catalyst to finally "falling in love" I had hoped for, but turned out to be the one I needed to realize life is far too short to be so unhappy.

    I had a great man who deserved the world, and yet I had no desire to give it to him. I knew it would be a disservice to keep him in a relationship that wasn’t working. He deserved to be truly happy with someone, and not spend the rest of our lives going through the motions because it was expected of us.

    It has been well over 3 years, and outside of close friends and family we’ve never been very public about the end of our marriage. As much as I share about the embarrassing details of my life, I’m equally guarded about the personal ones. For a long time that was to protect those who didn’t know and we still needed to tell. In part it was to respect anyone who may be hurt by this entire situation. The idea of disappointing so many people kept me stagnant for too long, and I've long since let that go enough to write about it.

    It was Kyle who finally told me to stop worrying about the disappointment and what other people thought. Despite the end of our marriage, our relationship as friends never ended. I’d like to believe that we find great support and encouragement in each other, and can both readily admit that we are two people who didn’t really belong together. And despite that, we still have these two amazing kids we work to raise together in the most peaceful and accepting environment we can create. I'd like to think that we are far better off as friends than we ever were as spouses.

    I've been wanting and needing to write about this, but every time I'd try and tackle it, it would all come out wrong. I've let a draft of this blog sit for well over a year as I've edited and rewritten it - thinking it would be too harsh or too truthful. But Kyle would always tell me to not fear the truth, for it is my raw honesty that people do appreciate. And at this point, nothing I could say would hurt his feelings.

    The longer and farther I travel into the cancer world, the more people I talk to in the midst of their own marital crisis. These are people putting everything they have into fighting for their life, with nothing left over at the end of the day for anyone else. These are caregivers who go from being a partner and lover, to a nurse and parent. These are marriages hanging by a string, and people so exhausted by cancer that they don't even care to maintain what's left of a strained relationship. These are cracks and fractures magnified by the pressure of disease and the exhaustion it brings to every corner of life.

    Cancer has left me with little tolerance for misery, and choosing to end my own marriage is probably the greatest illustration of this. It's not just cancer, but crisis that makes or breaks any type of relationship. And in my case, it was hard to break something that wasn't even whole in my mind and heart from the start.

    I think a lot of people in and out of a crisis like cancer are struggling, be it a relationship, a job, or just life. And I can't stress enough how short life is. I want to get to the end of it with as little regret as possible, and walking away from my marriage was the first step in that direction. I'm still a moderately hopeless romantic who holds on to her ideals, albeit with the proper pair of spectacles on this time.