6.21.2017

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

6.02.2017

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.




5.29.2017

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. 








4.30.2017

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.


2.24.2017

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. 

2.21.2017

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.

1.07.2017

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.

12.15.2016

Message in a Bottle

Today marks the day I got my last message from "Uncle Geoffy" two years ago. And in the spirit of our favorite rouge Brit, here's a recap of our annual trek to his beloved Cayman with my favorite fearless and future dive master.
On the water - where he belongs.
Just saw his first green morey while snorkeling.
He was born for this, and reminds me every time I drag him out in the snow that he's moving to the beach when he graduates from high school. 

Headed to snorkel over the USS Kittiwake. He will be able to get his junior open water dive certification next fall. 
Sting Ray City is still his favorite stop. The blob in the water would be one of those sting rays. The other blob would be Mick trying to force feed it squid.
Meanwhile, back in the real world, school has started. 
Heading out to Starfish Point, and like any good mother I make him do all the hard work.
Starfish Point - minus any starfish because visibility was so bad.

During his fall conference, his teacher passively (and slightly aggressively) asked if he would be missing any more school this year because of travel. I slyly asked what he meant by "this year." If he was referring to just 2016, maaaaaybe. If he was referring to the school year, I played coy. I think he was referencing a potential trip to Dubai I might have mentioned at the start of school, and the chance I might drag Mick with me.

It's not so much that I would be dragging him onto a 20-hour flight half-way around the world, but that Mick expects to go with me, as he expects to go on every trip I take. It's the price you pay when you are my adventuring companion.

And considering that I value experience and travel over anything school has to offer, the perfect attendance award will probably never be given to either of my kids.


12.11.2016

6 Weeks in Rashville

The perks of switching chemotherapy drugs after all these years include having hair again, and not feeling sick every other weekend. One doesn't appreciate feeling normal until they've spent almost every other weekend for the last 5 years playing a game of feeling-crappy-roulette.

I also don't have to drag around That Damn Pump. I'm giving the ol' oral chemo another try, despite throwing in the towel almost 2 years ago when my hands and feet just couldn't handle rotting off. It's simply the pump in pill form, and at a lower dose than my previous attempt. May my hands and feet schluff off with far more grace this time, as we gradually raise my dose to find the most tolerable point.

Relatively speaking, it's not that bad.
The one side effect that I both dreaded and anticipated with my switch to Erbitux was the infamous acne-like rash it is known for. Having battled my skin throughout adulthood, one doesn't look forward to getting out-of-control acne in the many places it might appear. It gave me another reason to love winter, as I enter my 6 weeks in Rashville during the time of beanies and scarves. The catch here, or so I hear, is that you want the rash. Apparently it's a sign that the drug is actually working - so welcome you pimply pustules.

I say 6 weeks, as I've been assured by the infusion room pharmacist that the rash should only stick around for that long before crusting over and going away. I'm 2+ weeks in, and as expected, I woke up to a cluster of teenage angst on my chin before the first week was done. By evening my nose was erupting like an overcooked creme brûlée. There are no better words to describe what was happening to every pore available on my nose. I was told not to pop them, but asking me to not pop a pimple is like expecting me to walk past a bowl of M&Ms without dumping them all in my mouth at once.

Two weeks from my first pimple sighting and I'd say the rash is most evident on my chest. My nose has calmed considerably, my scalp hurts, and my nose and face is now plagued by dry, chapped skin that I like to coat in Aquaphor multiple times a day. I also give it a dose of vitamin E oil, and a few other treats at night when I get home. My pillow cases are well moisturized and probably ruined.

But over all a little rash and some intensely dry skin is easy to live with given that I get to feel so good. I met with my oncologist on Friday, and short of him seeing the radiating glow glistening off my greased up face, he could tell I was very pleased with my new regime.

12.06.2016

I Would Walk 500 Miles

Death is inevitable, and for those of us in the metastatic cancer world, it might be a little more inevitable than for others. Not that any one of us can't walk out the front door today and get hit by a bus, but I think people with cancer take a far longer look at mortality than the average Joe.

Working in the cancer world has brought some of the most amazing people across my path. I've gotten to know, and if fortunate, meet people that knock my skinny jeans right off of me. These are people that don't have the years or rounds of treatment under their belt that I have, but wake up every day with greater challenges than I have ever known on this path.

My dear friend Marvin once casually asked me what type of pain meds I took. Mildly confused, I told him I didn't own any, but I guess I would buy Advil if I needed it. What he quickly made me understand was that he wasn't asking what I took to get rid of the occasional caffeine headache, but to deal with the pain caused by my cancer.

Huh?

I felt guilty having to tell him that I'd never had any pain.

It never occurred to me that some of these people that surround me weren't totally like me. They didn't get up everyday and have to remind themselves that they happen to have cancer while running around like the Energizer Bunny. They get up every day and are reminded by their own bodies that they have cancer. I don't have to put on a brave face, as I don't feel like I'm doing anything that requires bravery. But to get up everyday and constantly be reminded by your own body that there is something evil inside making everyday moments miserable - that takes guts.

As enriched and blessed as I have been to have met my people, there is that horrible downside. Many are on a path far steeper than my own, and I often times don't even realize it.

I've had to grieve the news of yet another friend whose death came as a complete shock. We met through Facebook, and it didn't take long for us both to realize that we were avid lovers of fresh air, mind-clearing walks, the power of the great outdoors, and our FitBits. Weekly I'd expect a FitBit challenge from him, usually to see who could get the most steps in each week. Given that we were both on active treatment, it was nice to find someone like myself who possessed the willpower to push the fatigue aside to hit the open road.

We'd often swap photos from our walks and hikes - him comparing the rural Pacific Northwest to my urban trails of Minneapolis. Though half a country apart, I always felt like I had a hiking companion right beside me as I ventured out solo on the trails.

When I left the metastatic colorectal cancer conference in Arizona last month, I hugged people knowing I may not see them ever again. That's just the reality of this world, and the price you have to pay to be in it. But when I hugged him, I never imagined it would be both our first and last time meeting. We immediately started discussing plans to see each other again in the spring at another conference - a conversation that continued into the next week.

As I type this, it's been a week since he passed. I've been monitoring my list of friends on my FitBit app, and watched as his step count has slowly declined. I know I will look soon enough and he won't be there. This is his end of watch.

I had the privilege of attending his funeral over the weekend, and though I was only there for an hour, I know it did wonders for my soul to attend and to hug his wife. During the service someone mentioned him walking despite the pain, and it further impressed me to know one more person who silently suffered for the sake of inspiring others. He never complained or mentioned pain to me, but he was always right there to walk with me and push others forward.







11.30.2016

Surfer Hair

This kid, the one I thought I wouldn't see go off to kindergarten, is in the 3rd grade.

And he did so with that long, luxurious, thick hair he inherited from me. I lived vicariously through it all the time, and I would like to thank him for all the French braids he sat still for and man buns I tried to get him to wear out in public.

He's always preferred a shaggy surfer boy look, but in this last year he took it to the extreme, and for one very good reason.

His inspiration to grow it out started last fall, when he met a woman who made wigs for cancer patients with their own hair. It occurred to him that he could grow his hair out to make me a wig. The only catch is that it doesn't look like I'm going to be needing a new wig any time soon. The cause remained, and the hair was grown.

He put up with TSA agents referring to him as my daughter on multiple occasions, and I put up with him wearing a constant beanie or ball cap.

But all good things must come to an end, and with the end of summer and my patience for deep conditioner and combing out rat's nests growing thin, the hair was cut.

I've yet to donate it yet (purely out of laziness), but with the first snip of the scissors, I can assure you the process has begun again.

Letting it blow free on the Cayman sea.
The last blow dry.
No backing out now!
Proud owner of a bag of hair.

11.23.2016

The Big FIVE

So many blogs ago, I think I mentioned that the 5-year stats for stage IV colorectal cancer survivorship aren't good: 10-12%. That means that 5 years from diagnosis, only 10-12% of those diagnosed stage IV will be alive. I know there are some other factors such as age, general health, and dying of other things that are considered. But after a few years in this business, it sure seems like that stat is pretty accurate.

It's weeks like this where I know it's got to be pretty damn close, as I've sat in front of my computer and watched 4 more young people die of this f*cking disease. Some I knew, and some I knew of through one simple degree of separation. But all were young and all were parents to little kids. All had to say goodbye to the babies they wanted so badly to live for. I can't even wrap my head around the thought or I'll start hyperventilating.

Some of these babies are just babies - the very space I was in 5 years ago tonight - curled up on the couch, nursing my baby to sleep as uncontrollable tears poured out of me. All I could think about was dying, and this little baby never knowing how much I obsessively loved him. I know these parents faced that very fear and disappointment to the bitter end.

I will think of them, and those that have gone before as I officially step in that 10-12% today.

And as much as I should be celebrating what 5 years of survivorship means for me, I can't help but have my head in the clouds thinking about the families that are having to plan funerals during a week that should be about thankfulness. I'm sure they just want to punch anyone who utters the word "thankful" in the face right about now.

I was volunteering at the boy's school yesterday when the kindergartners came marching down the hall in pilgrim hats on their way to a feast. Lachlan looked up and saw me with surprise. A huge grin came over his face, and I realized how important it was to him that I was there. My heart breaks thinking about those little faces that will be looking up in the coming weeks and months only to find that mom or dad isn't there - and what a immeasurable loss that is to their little lives. All because of a cancer that young people have no clue they can get.

A few weekends ago I was at a symposium for metastatic colorectal cancer patients put on by the Colon Cancer Alliance. It was a chance for me to professionally connect with other stage IV survivors, caregivers, and advocates, but also a chance for me to be around my people. And I couldn't help but walk away in awe of the many I met who have long passed the 5-year mark, and are living well past our statistically expected expiration date.

I have no doubt I will continue breaking those statistical expectations, too, and I will do it loudly and in the name and memory of those who never made it to this point. Here's to the next 5-years.

This girl right here was the first young CRC survivor I ever met, and gave me complete hope that I could surpass expectations when it came to LIVING with stage IV disease. She just passed the 8-year mark and currently has no evidence of disease (NED).
Long-term stage IV SURVIVORS! They got YEARS on me.
A whole lot to look up to in this photo. I plan to walk the same long road of survivorship and advocacy that these ladies have.
THRIVING as stage IV survivors.


11.19.2016

80 (+10) = 90

I'm about 10 rounds late in posting this, but over the summer I passed the 80 round milestone with chemo. And as you may know, that's not 80 rounds of some light and fluffy oral chemo that makes me want to go to bed at 8:30 instead of 9 every night.

That's 80 (technically 90 at the writing of the post) rounds of the nasty, toxic, vomit-inducing, anxiety-triggering, nausea-producing, hangover-making, fatigue-bringing, hair-losing, crap that makes a girl feel like shit and lay in bed with hot flashes for 3 days.

And as kindness and community sometimes go, the wagons got circled to celebrate. People came in to town, BBQs were had, gluten-free cake was bought, and I was alive to see it all!

And now I'm sitting in front of the fire enjoying the morning after my 90th round. And I'm only able to sit here and type because number 90 mark a change in directions - a change I've been wanting for the last 3 months, as some mild growth in one of my tumors had me mildly uncomfortable.

No one knows my many, many tumors as intimately as me. After all, I've been watching them grow up for the least (almost) 5 years! And despite the oncology world considering me stable, the very minimal growth (2mm every 3 months) was an indicator to me that the chemo I had been on for the last 3.5 years was no longer working on at least one of those suckers.

I went in yesterday prepared to put up a greater fight over switching up chemo than I did at my last appointment. I was prepared to go home and create graphs of tumor growth to prove to my oncologist that FOLFIRI had really run it's course and it was time to move on.

But all that pumping myself up wasn't necessary. As expected, one pesky little tumor added on another 2-3mm of weight, and he sat back and easily agreed that it was time to move on.

I'd say I had a remarkably long run on one drug that at one point shrunk my "innumberable" tumors, then just kept them from growing, and has slowly shown that it's no longer in the mood to keep one of those bastards contained. I'm still stable, and the "progression" I have is still debatable. But it was debatable enough to finally break-up with FOLFIRI.

My new drug of choice is a typical third line of defense in colon cancer, and it's called Erbitux. Having a wide network of colorectal cancer survivors in my community, I was able to get the inside scoop on what to expect with my new friend. Across the board I couldn't believe what I was hearing. There would be no nausea, no fatigue, no staying in bed all weekend, no thinning hair, no feeling like crap. I would feel totally normal. And I could have HAIR again! Not that the thinning hair and short hair was getting to me. Having lost it at least 6 times over the last 3 years, I was getting rather use to the cycle. But the idea of being able to dust off hair dryer, buy some deep conditioner, and shop for ponytail holders again is rather exciting for this long-blond-hair-kinda-girl.

The one side-effect, and it can be a big one for a vain person such as myself, is an acne-like rash. As much as one can cross their fingers and hope they're one of the lucky ones that doesn't get it, you actually want it. They say the worse the race, the better the drug is working. So cheers to me looking like a teenager who never washes their face!

I was set up with a sampling of lotions, washes, topical creams, and what I think is an acne antibiotic called Minocycline. The good news is the rash is only temporary, and so predicable that I was given a timeline of what to expect: rash, rash drying up, rash getting crusty, rash itching, skin getting crazy dry, etc. As miserable as it's all going to be, I think it's a fair trade for the chance to feel normal all the time, and stop to chronic cycle of feeling sick and tired every other weekend.

To wrap this up, I'm going to leave you with photos of my latest CT scan from Wednesday. When I say I have so many tumors in my lungs it's like looking at sprinkles on a cupcake, I wasn't lying. But short of seeing images like these, I'd have no clue. I don't feel them, they don't bother me, and my breathing isn't remotely effected. It always amazes me that this is what's going on inside of my body.

All the fluffy white stuff is cancer. The lines are veins.

They remind me of spring blossoms on a tree. Only they aren't. They are crappy little cancer that will kill you!




5.31.2016

Getting My Rear in Gear: East Coast Style

While trying to delete everything humanly possible from my iPhone so it could back up for the first time since October, I came across photos from our March adventure to Get Your Rear in Gear - Hampton Roads. And an adventure it was, complete with delayed flights, missed connections, and sleeping on the floor of the Newark airport.

I always take traveling in stride, and still stand back in awe that a flying aluminum can can get tossed through the sky and land you safely on the other side of the world. So when things don't go as planned, I just roll with it - much to the appreciation of every gate agent that's been screamed at by angry travelers for things not in their control.

I thought an airport slumber party would be excellent training for my world-traveling Merrick, and his future full of international adventures. Like his mama, he takes flight glitches in stride.

The race itself exceeded expectations in both participation, and funds raised. Hampton Roads is one of 3 colorectal cancer "hot spots" in the United States, and being able to put money back into that community to help get people screened is vital. I'm so proud to work for an organization that is helping to fight this disease on a local level.
My adventurous world traveling companion, always by my side.
First lesson in traveling with me - plans change and you just roll with it. Making the most of a night on the floor in Newark while we await the first flight out in the morning.
My (taller than me) little sisters Esther and Hannah - fresh from university life.
3 sisters.
Probably one of my oldest and dearest friends.

5.25.2016

Preschool Graduate

I once rolled my eyes at the parents who went over the top to celebrate insignificant milestones. But then that fateful day came when I wondered if I would be around to see any of them. Today marked what I still consider to be an insignificant milestone, but one that I celebrated like it was the sweetest of moments. Lachlan graduated from preschool.

Considering the kid can barely write his name, hold a pencil, draw something recognizable, or cut with scissors, I'm surprised they let him graduate. I also think they can't exactly fail you in preschool, so they have no choice but to send him on to kindergarten. He may lack the basics when it comes to fine motor skills, but he'll happily sit there and tell you all about the irukandji jellyfish, Goliath bird-eating tarantulas, or the 72 most dangerous animals of Australia in perfect, murderous order.

He has never been a motivated child, and has never in his life been in a hurry to do anything. Hopefully kindergarten will put a burner under his little butt.

I celebrated today because the attention and reverie made him so happy, but also because it is a day that I am here to see. Not that I doubt I'll be around for many more future graduations, but days like this always remind me that I am so grateful to be here for this.

I also celebrated today with too many moms not far from thought because they aren't here to celebrate graduations. The first part of this year has left me on the sidelines, watching moms that I may have only connected with through email or social media get the news that no one in our shoes ever wants to hear. As the end of the school year nears, I can't help but think of the moms that have had to say goodbye to their babies in recent months because of this (f*cking) cancer, and what any of them would have given to be here for even the silliest celebration. As I type this, I know that there is one family coming together today to say their final good-bye, and two kids who won't have their mom there to celebrate as they finish out the 3rd and 5th grade in a few weeks.

To me these little milestones are forever going to be worth celebrating, because I'm here to celebrate them.

5.21.2016

Mummy Leg Boot Camp: Week 1

This blog will probably only be interesting if you have lymphedema. Because your doctor will not tell you about this condition, let me warn you that if you have had lymph nodes removed because of cancer (like most of us in the colorectal cancer world), you can develop lymphedema at any time. Do not rely on your oncologist to warn you about it, talk to you about it, or even recognize it.  Most doctors get 2-3 hours of instruction on lymphedema during all of medical school, and therefore don't have it on their radar. 

The rest of you can read on at your own risk of boredom.

I learned a new word this week, and that's fibrosis. I can't exactly explain what it is, but it has to do with protein not being moved out of our system because of the damaged lymphatic system, and depositing itself in our lymphie limbs.

I don't have any major issues with it yet, but my PT could feel some it in the outside of my ankle and on the outside of my calf. I can always notice a slight bulge on the outside of that calf most nights, so it can be considered one of my "problem areas."

Solution #1: Swell Spot

He gave me this padded thing that I can wrap into my bandages to help break up the fibrosis. They come in all difference shapes and sizes, and this was what worked for my calf. The objective is to move this swell spot around each time I wrap, so it never hits the same spot on the outside of my calf all the time. It can either be wrapped under the foam or over the form for variation. Regardless, it makes the Mummy Leg look even larger, so that's awesome.

The swell spot will go under or over the foam wrap, and move around each time I wrap as to not hit the same area every time.
The swell spot was inserted under the foam layer, and in a slightly different spot than it was over the last 12 hours. Notice my lovely bulge.
 Solution #2: The Quick Wrap

I have never managed to make it through the night with the Mummy Leg. And ideally, I would wear my left leg wrapped every night, and just wear my sexy compression garment during the day. Obviously for Mummy Leg Boot Camp, it's all Mummy Leg, all the time. After a failed first night with the new wrapping style, my PT introduced me to the "quick wrap."  Less criss-crossing over my foot and ankle with the hopes of less irritation to the top of my ankle, and less waking up at midnight to rip the whole damn thing off like a maniac. I've slept through 2 successful nights with this style of wrapping, so we're making progress.

Solution #3: Mummy Leg Wrapping

No one in the world of lymphedema will argue that the best thing we can do to shrink our legs down is multi-layer wrapping. Compression garments are merely meant to contain/minimize the swelling, but that sexy Mummy Leg is the only thing that will actually bring it down. But frankly, ain't nobody got the time or the wardrobe for that. But three days into Mummy Leg Boot Camp, and Fat Lefty was measuring symmetrical. I know this is a feat not achievable by so many other lymphies, but I stress that my swelling is so mild that it's not even noticeable if I strut my stuff through Target in skinny jeans.

Thursday measurements to compare against Tuesday measurements.
Symmetrical ankles are what some girls dream about, and I got 'em! At least for this moment.

Symmetrical Fat Lefty earned a few hours outside for some fresh air, before coming home to get wrapped - again.
Solution #4: Learning the Art of Manual Lymphatic Drainage Massage.

Wow, have I been doing this all wrong. You-Tube, you suck!  I'm learning some crazy techniques and touching my body in ways that are magical. I'm going to start actually learning to do it myself next week. My PT says he can actually feel my fluid moving as he does it, so this is a good thing. He's moving the fluid up toward my pelvis, where it will ultimately get picked up and move through lymph nodes in my neck and flushed out. With one of my main goals being to keep my skin as normal and healthy as possible (should I ever have the opportunity for surgery), I want my skin to retain as much of its youthful glow now so it can look supa-fly if Fat Lefty can ever return to normal.

Boot Camp next week consist of me learning to massage myself, and he even offered to teach Merrick to do it if I bring him in. Then I thought about it and considered it might be a little awkward to have an 8-year-old rubbing his mom's legs and pelvis.

5.15.2016

Fat Lefty goes to Boot Camp

It's been over a year since my lymphedema diagnosis, and I am no closer to accepting the condition than I was when I got the news. My vanity takes a hit every morning when I get dressed, and every night when I stare at what a day full of gravity has done. The information contained in this blog is really only interesting if you have lymphedema, but feel free to read on till the end and see a photo of my legs.

I feel bad even remotely complaining about Fat Lefty, given that the only person who really notices how fat he is is ME. Short of really staring at my ankle while I stand in line in my skinny jeans at Target, the average American wouldn't notice my condition unless I pointed it out. I'm sure if I walked around with a pair of shorts on, most people would assume I had suffered some type of injury, and was wearing a sexy medical apparatus until it healed. I know my hardly-noticeable-fatty-leg does not compare to what many in the lymphedema community have to battle with, and try to accept every single day. If they can do it, who am I to complain an ounce.

This leads me to what I'm calling Mummy Leg Boot Camp, which starts on Tuesday.

Upon diagnosis, I was suppose to see my Physical Therapist every day for 2 weeks straight. It was during this time I would get daily MLD (manual lymphatic drainage) massages, learn to massage my own leg, and master the art of multi-layer wrapping, or what I refer to around here as the Mummy Leg. Due to reasons I won't go in to, I only saw my PT (also known as a Certified Lymphedema Therapist) twice, and was left on my own to learn MLD and multi-layer wrapping with the help of everyone's friend - YouTube. Because Fat Lefty quickly responded, fell into line, and fit back into my skinny jeans, I thought I was doing alright for myself.

Two months ago, I noticed that my ankle was far more swollen at the end of the day than normal. I did the math, and realized I was right at the 6-month lifespan of my compression garments, and ordered new ones - thinking that would resolve my issues. But the new garments didn't help, and my ankle continued to be just as fat at the end of each day. Thinking it was time to change up my game place, I made an appointment to see a PT, and our first meeting last week was overwhelmingly productive.

Apparently I was short-changed from the start, and it's about time I finally came in and learned how to properly take care of my left side companion.

I not only learned more about lymphedema in one session with him than I had learned through everything I'd read and watched, I learned I was doing it ALL WRONG. From the method I'd been taught for MLD, to the way I was multi-layer wrapping my leg. How dare you fail me people of YouTube! I also mentioned my observation that "gluten makes my leg flare," and he wholly agreed that gluten was an inflammatory agent, and applauded by intimate observation of what it does to my leg.

For all you gluten-free haters out there who want to throw me into a Portlandia skit right now, I have time and time again learned by trial and regret that within 48 hours of eating gluten, my leg with swell more than normal (or flare as we like to call it). And it takes a solid week of doing everything I normally do times two to get it back down to "normal."

How Fat Lefty survived his first year on this earth I will never know.

So here's how Mummy Leg Boot Camp is going to go down.
  • I'll see my PT 3 times a week for the next 3 weeks. This is the attention and education I should have had in those initial 2 weeks after diagnosis.
  • I'll learn how to properly give myself the most thorough MLD (that even involves massaging lymph nodes near my collar bone that I didn't even know mattered). This should hopefully make my bedtime MLD ritual far more productive at getting my ankle back down to normal. And when I say normal, what I really mean is having it not look and feel like a memory foam mattress, and maybe even seeing my ankle bone again!
  • He will help me refine my Mummy Leg wrapping skills. You know the ones I self-taught after a single lesson and a take home pamphlet with a few visual keys? He also noted (while measuring my legs for comparison) that my left foot itself is not affected by swelling at all, so adjusting the way I wrap, with less emphasis on my foot, may help the next item on this list.
  • He will hopefully help me wrap in such a way that I don't wake up in the middle of the night and rip my bandages off because they are causing me the most annoying pain on the top of my ankle. Ideally, I should multi-layer wrap every night and sleep in it, but because of this unexplained and annoying top-of-my-ankle pain, I don't bother. Instead, I do it inconsistently on days when I know I'm going to be lounging around the house - like chemo weekends.
  • I will be wearing the Mummy Leg as much as humanly possible for the next 3 weeks, and I've already negotiated with Merrick his fee for rolling the bandages for me every day. Rolling bandages is a chore. I liken it to jamming up your mix tape and having to bust out a pencil to get it rolled back up inside. This is wear the vast collection of maxi dresses I bought last summer come into play, as I can hide it all from inquiring minds as I venture out in public.
I'm calling this a boot camp, because it will ramp up the already obsessive attention I pay to Fat Lefty. He currently gets about 2 hours of undivided attention a day, which is far more than I give either of my poor kids:
  • I get up at 5:30 every morning, make my coffee, turn on the news, and pump my left with my Flexitouch for 60 minutes. Feel free to start texting me at that time, as I'm just sitting on the couch with nothing to do but attempt to catch up with the vast world of Facebook.
  • I wear my compression garment every single day. As I've explained in a past blog, this gives my left thigh and butt cheek an amazing profile.
  • I use a combination of MLD, dry-brushing, and elevation before bed.
I do obsessively take care of my leg, and I do it for the following reasons:
  • I want it to be and look as normal as possible.
  • I want it to fit into my vast collection of skinny jeans.
  • Vanity.
  • I want my skin to stay as healthy and normal as possible. Given that there are experimental surgeries out there to fix the damaged lymphatic system (in my case the missing 21 lymph nodes that were removed from my left pelvis when I had my colon resection), I want my skin to look good (and normal) for the day it might see sunshine again.
  • For reasons I don't quite know, lymphedema limbs are far more prone to infection. Given my already compromised immune system, a little infection of the skin could lead to me taking one of those glorious hospital vacations where I get room service, free cable, and all the heated blankets a girl could want. As delightful as that sounds, I'd like to avoid it.
I will easily admit that I take my bi-annual hair thinning and bi-monthly treatments in stride, but this whole lymphedema business is the BANE OF MY EXISTENCE. I personally know so many in the colorectal cancer world that have their own life-altering repercussions from this glamorous cancer, so I try and keep the complaining to a minimum about something that really only takes time and vanity away from me. I'm alive, so who am I to complain about anything really.

As promised, legs.

 



3.03.2016

Get Your Rear in Gear - Hampton Roads

Get Your Rear in Gear is coming to Hampton Roads for its inaugural race. For anyone that knows me or my story, I was living in the Tidewater (Virginia) area when I was diagnosed over 4 years ago. I spent my first 2 years of treatment there, so the area has an extra special place in my cancer journey.

Having a race there has nothing to do with my own personal efforts, as the events put on by the Colon Cancer Coalition are all led by local volunteers. But you bet I'm going to be there!

I'm bringing my little toe-headed pint-sized posse with me, too. Merrick will happily tell you all about your colon, the digestive process, and the purpose of a colonoscopy. Lachlan will just tell you poop jokes, make fart noises, and laugh.

If you live in the Hampton Roads area, know me, brought meals, watched my kids, sent cards, or supported me in any way during those first 2 miserable years,  I'd love to see you and have you join us at the race. I even have a team!

Sign up for Team Colon Cancer Chick and help me raise colon cancer awareness in Hampton Roads on Saturday, March 25th at Matterson Trail in Hampton.