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. 


The Trickle Down of the New York Times

To read Kirsten's story click here.
At the end of February, the American Cancer Society released a study confirming what those of us "in the know" already know - colon and rectal cancer are on the rise in young people.

This led to a story in the New York Times featuring a local friend of mine, Kirsten, who was diagnosed while still in college. It also featured two other young people diagnosed under 50.

This article was so popular (with over a million hits) that the New York Times followed it up with a second article featuring yours truly and her Erbitux rash.

I'll dispel any myths now by saying the beagle is Ruby, and she is not mine. At the time the article was being written and they wanted photos, I was visiting my fairy godmother in Charlottesville, Virginia, where she lives with her merry band of hounds.

As much as the colorectal cancer community in general was thrilled to see the national awareness these articles brought, I also got see the personal impact my story had, and the knowledge that once again putting it out there (and screaming "blood in your stool is not normal") may keep someone from going through everything I've gone through.

In the weeks following, I spoke on the phone with a mother in Florida who had tracked me down. Her 20-year-old daughter sent her the article and said; "Mom, this is my exact story. This is exactly what they are telling me." The daughter was going back to her doctor, article in hand, and demanding a colonoscopy.

A few weeks later I got an email from another young man with the same story; "This is exactly what has happened to me. I'm now going to go back to the doctor with your article and telling him I want a colonoscopy."

The comments on the article and social media were endless, often from parents whose young adult children didn't fair as well, or other young people who had the same story to tell. When I read these stories, or hear these comments, it's like there has been a silent predator lurking in the night. Like Peter and the Wolf, where we've been screaming wolf for so long, and now that the wolf is here - no one wants to listen. This study and national articles like this trickled down to local media, and the stories that were told by my peers in their cities and towns are countless.

This disease is showing up like a thief in the night, and the upcoming generation of Millennials and Gen Xers are going to to feel its wrath. Start the conversation about this disease with your kids now.
To read the article click here.


Not Worth Measuring

I'd had a cough since last summer. It was easy to write off as allergies and move on. I'd hear one of the kids cough and tell myself, "See! Something in the air is bugging them, too!" But it never fully went away. At one point I had to get a refill on my jug of cough syrup with codeine - one of the perks of having an oncologist on speed dial.

It was an all day, every day cough. As someone living with lung mets, it's easy to see why my mind would quickly and easily go from blaming allergies to wondering if this had something to do with the party in my lungs.

I knew some of those at the party might be getting a little too drunk, and of course I had to wonder if this cough was the first manifestation of my cancer. I casually mentioned it to my oncologist when I saw him, but he never seemed concerned. He's always far more interested in talking about where I'm going and where I've been than actual cancer. What could he do about it anyway if my lung mets were really to blame?

The cough went on, and included coughing fits that raged enough to get the attention of anyone around me. About a week after I started Erbitux, I noticed the cough was gone. For more than 6 months straight I had coughed every day, all day, and POOF I stopped.

I tried not to let myself think that my new chemo could be working, or at least working that fast. But could it? Could I be just so damn lucky to have the two first-line treatments for metastatic colon cancer actually work for me? I'm immersed in a world where chemo fails far too many, and here I am winning the lottery over and over again.

Then a little bit more pixie dust got sprinkled.

A CEA blood test measures the amount of protein in the blood of people that have certain types of cancer - colorectal cancer specifically. For me this number has always been in the normal range (0-3.5), and never something on my radar. It's probably why I never mention it. Over the last 6 months, it actually started creeping up. Nothing to remotely lose sleep over, but my oncologist noted that it had gone above the magical dotted line and made it to 4.7. Not enough to raise an eyebrow, but considering my pattern, enough to make my oncologist mention it in passing. We both agreed it wasn't concerning, and I knew it was still exceptionally low considering I was surrounded by peers whose CEA markers were in the hundreds and thousands.

During my 4th round of Erbitux, everyone's favorite infusion room pharmacist came around and poked his head in to check on me and admire my Aquaphor-covered rashy face. While discussing my normal lab work, he casually mentioned that my CEA had come back at 2.0 - so that was good. I suspected that he got that number wrong, and went looking for my lab work. He wasn't making things up, and I added this drop to the little folder of hope where I had placed my disappearing cough. I then went on with my day, and slathered more Aquaphor on my miserable face.

In the coming weeks, my CEA would continued to drop to the point they no longer assigned it a number. It fell lazily below .5, and not worth really measuring by lab standards.

Between this <.5 and the cough that had long disappeared, I will admit that I once again walked into my latest scan cocky and confident. Coupled with my oncologist telling me weeks before that he was pretty sure the chemo was working, I knew it would be good, it was just a matter of how good.

And I needed good, as living with remarkably dry skin and a sexy chemo rash that rivals a mange-covered dog at the pound, I needed to be inspired to continue coating myself in heavy creams and lotions at least twice a day, and walking out the door with a neck that look like I'd contracted some weird disease in a third world country.

Well feel free to gift me with bottles of Eucerin, because the news was as expected.
As exciting as it is to know that I continue to defy the odds and have now responded to two different chemos, it's not exactly something I'm shouting from the rooftops. I know too many people who have never responded, stopped responding, and the idea of sharing this news with them seems almost boastful. As encouraging and hopeful it can be to show someone that chemo can really work, the mood in my world is too somber right now with news that another young life has been snuffed out by this disease. Survivor's guilt is real, and that rash you see on my neck isn't contagious. 


Right Between the Toes

Thanks to the power of social media, I've met another "lymphie" (as we call ourselves) who lives in the Twin Cities. It's one thing to connect with so many other young women dealing with lower limb lymphedema all over the world, but it goes to the next level when one of them is sitting across from you having coffee.

This person happened to be far more proactive than I've been about my leg, and instantly set me on the path to doing what needed to be done to not only get the best care around, but start the ball rolling on the surgery to potentially get it fixed. She has not only had the surgery, but has fought the insurance battle I have ahead of me to get it paid for. This was just the friendship I needed on so many levels.

Today was one of the first steps in Fat Lefty's mission to return to normal, or as close to normal as he may ever be.

Per the doctor's orders (because there happens to be an MD in town who specializes in lymphedema), I had a lymphoscintigraphy and standing Doppler.

Dr. McHottie didn't stick around for a photo,
nor comment of the mud under my toe nails from
3 straight days of muddy trails this weekend.
In my best non-technical description, the lymphoscintigraphy involved me laying on a table, having extremely painful injections between my toes, and a series of x-rays to see how these radioactive tracers moved up both legs. When Dr. McHottie said the injections would hurt, he wasn't kidding. Rarely am I vocal during a shot, but I think I channeled Ricky Bobby and called out to the Lord Baby Jesus for each round. Let's just say that if I ever become an IV drug user, shooting up between my toes will not be an option. And should I ever decide that tattoos are for me, getting one anywhere near my toes ain't gonna happen either.

After the first series of x-rays on my legs, I walked around for 45 minutes and then had the same process repeated from head to toe.

The afternoon was far less painful, but far more entertaining. I walked over to the heart hospital for a "standing Doppler" of my legs to check on my veins. My medical tech for the procedure was Russian, so I will expect you to read her part with your best Russian accent.

Tech: "You are to remove everything from the waist down but your undergarments."
Sarah: "Um, undergarments?"
Tech: "Um, you're not wearing undergarments?"
Sarah: "Ummmmm, nope!"
Tech: "Uhhhh, no?"
Sarah: "You know, going commando."

I should have known that would have been lost in translation by the lack of amusement on her face.

Tech: "I will be moving your legs all around, up, back, to the side."
Sarah: "So like a Brazilian bikini wax?"

I should have known she would not get that joke either.

Tech: "Um."
Sarah: "I'm cool. I'll just wrap the blanket around me and go with it."
Tech: "Um."
Sarah: "Or I'll wear a diaper, or those gauze panties they give you up on the maternity floor."
Tech: "Just use the blanket."

I don't think she was very pleased with me by the time we started.

She then proceed to wedge her ultrasonic tool so far up my groin, undergarments would have clearly been in the way anyway.
Glow little lymphatic system, glow!
The white dots are the radioactive tracer  remaining in Fat Lefty, clearly not
present in my boring right leg because that fluid is long gone.


Despite Cancer

I retreated up to central Virginia during the Christmas holiday to be with my fairy godmother. Considering that I was visiting just a few hours away, how could I not. Aside from the intimate connection I have with her,  January 2nd would mark two years since my fairy godfather died of cancer. Being with her during this time seemed obvious.

The night before was a sappy mess of wine tastings, wine, and more whine as we sat and reminisced.

As anyone who has experienced close loss, I still expected him to come bounding into the kitchen and announcing loudly that he, in true British-fashion, was going to have a cup of tea - as if anyone cared. If you knew him, you can probably still hear his booming and self-centric voice now. Most of us learned to tune it out.

He was diagnosed with cancer almost a year to the day that I was. Mesothelioma - not what you expect to die from in your prime. I remember him sitting across from me over that Thanksgiving weekend, him talking about the chest x-rays, the concern over a dark mass, and the fatigue he was experiencing. I knew then what he was going to find out when he returned to LA, but I didn't have the heart to tell him. Part of me believes he knew it to, but no one wanted to admit it at my dining room table that night.

In August of 2014, he called me while I was at the gym. I remember because I stopped my workout to answer, not knowing what news I was going to be getting on the other end of the line. It had been almost 2 years, well past the 6 months he was given to live after his terminal diagnosis. He was planning a last minute trip to Cayman, and begging me to come. He casually mentioned that the cancer had spread to his hip bone, and I knew then what this trip was really about. Despite the offer of a month in Cayman, he couldn't have picked a worse time for me, and my going would not be possible. It was his farewell tour, and I could not make the ride.

With masses of cancer in his chest, he would no longer be allowed to dive. But with determination only he could have, he had found a way around it. I remember his fascination with free diving starting long before his diagnosis, almost like he had a back-up plan before he knew he would even need one. We shared a common interest in people who push their bodies to extremes, not knowing we would one day be sitting simultaneously in infusion chairs 2000 miles apart pushing our own bodies to extremes.

I think running gave me a glimpse into physical and mental endurance, and I liked it. I'm one of those people that not only loves to rise to the challenge, I know I have the mental-tenacity to welcome it. I think it has always been the root behind my reading preference for stories that involve extreme survival. During those first 2 years of chemo, when I could do nothing more than lay in a dark room, I remember telling myself that anything would be easier than this. I longed to return to the days when the pain and misery of physical endurance would pale in comparison to the sickness and misery of chemo. I told myself that I would be strong again, and I would channel all the sickness into an even greater desire for extreme accomplishment.

When people come to me facing no choice but a lifetime of chemo, I spin it into analogies that involve endurance sports. It's how I think, and how I relate to most challenges in life I guess. When you set out to do a long run, you can't think about mile 5 or mile 10 or mile 26, you have to consider the mile you are on and finishing it. If you focus too much on the many miles ahead, you will wear yourself out and the run will become mentally impossible. If you're training on hills, you can't look out at the rolling path ahead of you, but should focus on just the hill in front of you, the downside, and the recovering on the flats. One mile, one hill at a time. One round of chemo at a time.

I tell people it takes great mental tenacity and emotional stability to endure any challenge - cancer included.

I look at this photo every day on my phone, my desktop, in my office, and in my house. Here is a man with cancer overtaking his lungs, in his bones, and soon to be in his brain. Yet he took his pain and physical limitations and put it to an extreme test. It is my daily reminder that I can do anything despite cancer - I am doing everything despite cancer.

Ascending over the USS Kittiwake - Grand Cayman.