Thanksgiving Eve Again

On Thanksgiving Eve 4 years ago, I woke up to a doctor telling me I had a malignant mass in my colon. I had no idea what malignant really meant, or that young people could even get colon cancer. I didn't even know if I would live long enough to see Merrick go off to kindergarten. Now here I am with a 2nd grader, defying the statistics, and living with my "good, stable disease." Happy Cancerversary to me!

I know many who will sit down today with one less person at their table this year because of this disease. I know many who are wondering if this might be their last Thanksgiving, as cancer runs rampant through their bodies. 

I don't want anyone to miss a holiday, a milestone, or a day because they didn't get screened or know the symptoms of this disease. On Giving Tuesday, help support the Colon Cancer Coalition in their efforts to raise awareness, promote screening, and educate people about a disease that is being diagnosed in young people with shocking frequency.

The Journal of the American Medical Association predicts that by 2030, the rate of colon cancer in young people ages 20 to 34 will increase by 90%, and rectal cancer will increase by 124%. Because young people do not fall within the recommended screening age, they are going undiagnosed. To be proactive, the Colon Cancer Coalition is doing what it can to educate and increase awareness of the signs and symptoms of this disease, and raise the profile of young people being diagnosed. 


The OC

I've been to a few of the Get Your Rear in Gear races this year, but (outside of the Twin Cities) none hits closer to home than the Orange County race. Granted, I'm a LA chick, but I'll take some OC if I can get it - especially when I'm just a drive away from some of my favorite people.

College roomies!
It was a nice little preview, as I return on Friday for Thanksgiving. It made saying good-bye a little easier, knowing I was going to see everyone I love by the end of the week.

I love going to races, because I love the emotional energy and connection I make with so many other people that have been impacted by colorectal cancer. From meeting other survivors, to seeing families so impassioned about what they do to honor the memory of someone they lost to this disease - it just fills me up.

And I don't go to these races as a survivor. Obviously I am, but this isn't my race and this isn't my time. I'm simply there  as an employee of the Colon Cancer Coalition doing my job. And if someone happens to figure out what I am, then my cover is blown. But rarely do I play the "survivor" card when I'm in work mode.

The man who stole my college
roommate and married her.
I did have the chance to connect with a survivor at this race, and as she told me her story and started to ask questions, I couldn't help but blow my cover. One-on-one is far different from me getting on stage and ripping open my dress shirt to reveal the big S on my t-shirt. This girl was young, a few months in, and still trying to navigate her way through her diagnosis and treatment. To be able to connect with her on that level, and provide a connection to us as an organization feels right to me. To say to her that I've been through this, that I'm still going through this, and when you think you can't do it any more, I'm here to say you can. It makes me cry just thinking about it. I love so much about what I do, but to be able to instantly connect with someone like that just makes it that much sweeter. I could not imagine what if would have meant for me to meet another young survivor just a few months into my treatment.

Without much effort, I also lured a few of my longest and closest friends to come down. Though not the best place to hang out due to my limited time and availability, it was still so great to know that they wanted to come down and do their part to support me, and to support my cause. I look forward to seeing even more of my friends and family when we have our inaugural race in Los Angeles on May 15th.

You heard it here first, folks! Get Your Rear in Gear - Los Angeles is happening, and I couldn't be more excited. I plan to form a team, should you happen to live in LA (or any of the surrounding counties) and want to join.

And representing San Bernardino County...
So glad to have these girls by my side 20 year later.
And representing the 310...


Friday with #5

I'm what I would call freelancing right now with oncologists.

I have my favorite, but she's about an hour away. I see one in the same hospital system closer to home, and he has (I think) warmed up to me. Just when we're settling in and he's realized that my cancer is indeed very stable and slow growing, he changes days at my clinic. And it's not that I can't change clinics with him, I just don't want to.

A view from the chair.
I'm currently at a new facility with private rooms and sweet nurses. If I followed him to the other clinic on my treatment day, it would mean an open infusion room, horrible decor, and bad color schemes. I've only been there on 2 occasions, and the color scheme alone makes me never want to go back. I'm sure this can be directly blamed for the general moral of the troops at that location. Or so I hear.

I can't stress enough how important and valuable your surroundings are when being infused. Remember I started this journey in a giant bullpen with at least 50 recliners and IV poles sounding alarms every other minute. Now I'm in a semi-private room, with giant windows, lights I can dim, a curtain I can pull, and nurses who work serenely at their station. There is no doubt where my infusion-induced anxiety started. So needless to say, the colors and the chaos of an infusion room matter greatly in my treatment plan.

I'm doing my best to stay at my preferred clinic, and that means seeing another oncologist on a different day. Because my case is so straight forward, I'm fine with this. I was a little more encouraged when my home care nurse came to disconnect me 2 weeks ago and told me that she had not only known this oncologist since his days as a resident, but that he was "absolutely brilliant!" She's been an oncology nurse for 30+ years, so I'm going to take that as a stellar endorsement.

So welcome oncologist #5.

#5 and I met before my infusion today to go over scan results, and I broached all the subjects.

Is it time to consider the next drug? He says no. He understands that growth is expected in my case when I'm only on 5-FU. I've got years of maintenance chemo to prove this. And despite my tumors having complete stability with my last scan (no shrinkage, no growth) while on Irinotecan, he said they will wait until there is "substantial change" before they will consider switching me to Erbitux. I tried to make the crack about my "no hair and great skin, or hair and bad skin," but I think it was lost in translation. #chemogirlproblems

So it's another 3 months of Irinotecan, which should be doable minus a few trips already on the books. Then we shall reassess after my next PET.


PETs, Rashes, and Bad Word Choices

25 minutes nap in the middle of the work day?
Don't mind if I do!
For some reason, I just signed up for that whole online medical records thing on Monday.

They have always tried to sucker me in, but I don't think I've ever cared enough to envision myself voluntarily going to that website when I could be on People.com learning about more important things. But what the hell! The login was staring me in the face, so I did.

And what do you know, all my tests and reports were right in front of me - including my PET scans for the last year. Ironic considering I had a PET scan on Monday.

Low and behold I got an email yesterday saying that my medical records had been updated. For once, I won't have to wait until I see my doctor to get the results. Amazing how that works.

As usual, I pretended to be complacent about the scan, and expected minimal growth (the usual 2mm considering I've taken a break from Irinotecan for the last few months) and clean reports for every other part of my body. And as usual, that's what's going on. Under normal circumstances, this wouldn't have phased me. My disease remains small, does not impact my breathing, cannot be felt, and is controlled when I'm on the nasty drugs.

But what did catch me off guard was the note from the radiologist: "Overall the pulmonary metastatic disease appears to be worsening." Worsening. Hum.

I took offense. Sure, my tumors grew, but worsening was probably not the best word to describe my condition. It connotates such doom and gloom.

I go back in for round 67 on Friday, where I'll assumably be back on Irinotecan. Then traveling will keep me from getting treatment for the rest of the month. I'm sure my oncologist is getting annoyed by my exotic travel schedule, but he's going to have to work around it for one more month. Then I'm all his until further notice.

I'll be having some come-to-Jesus conversations with him about the results of the last few scans, and see if he thinks I may have run my 3 year course with Irinotecan. If he agrees, this would mean on to the next drug. I'll get to finally grow some hair, but the main side effect of this drug would be an acne-like rash.

So no hair and great skin, or hair and bad skin. Considering the latter pretty much sums up my 20s, I think my vanity knows how to handle it.


And Now I Can Let My Hair Down and Relax

I have been on the same chemo combination for the last 3 years (FOLFIRI) because it has worked. Why fix it if it ain't broke, and the general idea behind treatment is that you stick with whatever you're doing until it stops working. The main drug, Irinotecan, as continually shrunk my tumors enough to keep them in check.

The 4th version of the 5-FU pump I've had in as many years.
At my last scan, the tumors hadn't grown, but they hadn't exactly shrunk either. This leads me to believe I might have run my course, and it's time to consider something new. My doctor isn't quite as quick to jump on that train, and wants to wait to see what my next scan (November 2nd) shows. I've taken a little Irinotecan break over the last 2 months, primarily because life has been a little hectic with the Get Your Rear in Gear - Twin Cities event (it was last Sunday), so it was all hands on deck - not all hands laying around in bed too sick to work. I've still been getting my 5-FU pump, as I can get hooked up to that and still go about my day (and make my 10,000 Fit Bit steps because I feel normal). I currently have round #66 hooked up to me now.

Back in August, my doctor found a drug trial he thought sounded promising for me. It involved testing my original tumor for a BRAF mutation (only 10-20% of colon cancer tumors have this mutation). The BRAF mutation is associated with melanoma, and from what I gathered from the papers I was given, they are finding some genetic links between colon cancer and melanoma that may make the melanoma drug work with certain colon cancer tumors. As exciting as a drug trial sounds, I wasn't exactly thrilled at the prospect, but a girl's gotta do what a girl's gotta do. The trial drug would make me lose my hair (which is falling out right now for the 4th anyway), and the trial included a colon cancer drug (Eribtux) which has the wonderful and vanity-pleasing side effect of a rash on parts of your body that are highly visible. What vain girl like myself wouldn't want to be bald and adult acne all over her face, head, chest, and back?

I found out yesterday that I do not have this BRAF mutation, and therefore do not qualify for the trial. A slight sigh of relief on the part of my vanity. May I enjoy my unblemished skin for now.

So for now it's the same ol' same ol', and I will admit that I'm not all that disappointed in my hair falling out again. I was frankly shocked that it grew back in while actively on Irinotecan. But as with the first 2 times it fell out, it's a gradual shedding - none of this falling out in chucks in the shower like it did the 3rd time. So I'll let it take its time, and help it along the way with some daily combing. I'm glad to see the curly coarse hair fall into the sink, and I find them somewhat fascinating to look at - in all their curly coarseness (#straighthairproblems). May my hair follicles resume their straight hair growing ways for this straight-haired girl who has no clue how to handle the hot mess of hair that I've had all summer. 


I Will Not Walk Away

I went to the golf tournament fundraiser a few weeks ago. You know the one I wrote about a few post back? I was disconnected from my pump that morning, and expected to feel myself by that evening, but it wasn't happening. My blessed little nausea pills got me through.

It was easy to be touched by this room full of people. Some sharing stories about Todd, most probably having known him, and all walking away with the tremendous sense of loss that everyone feels with his death. I'm sure it was an extremely hard evening for many that were there, masked by the celebration of his amazing life.

For me, the nature of my job and the circles I move in put me in the path of countless stories of young lives snuffed out too soon from this disease. The stories never end, and sadly I know they won't for a very long time. Todd is just one more person on that list, but his friends and family are doing what they can to keep his legacy alive while helping someone in his very shoes. And obviously that someone was me this year.

The proceeds from the event far exceeded my wildest expectations, and I can easily admit that it brought me to tears on a few occasions. The idea that these complete strangers did what they did for me because they want to honor and remember their friend leaves me beyond humbled. I don't think I've ever looked forward to a medical bill in the mailbox, knowing now that I will be able to pay it off this time. I will finally stop getting the monthly reminder of treatments I received almost 2 years ago.

The thing that stuck with me most from this opportunity was this idea behind The Elephant Movement - that elephants will not walk away if one of their herd is down. They will literally hold vigil until that elephant gets back up.

In all honesty, I can say this isn't true of humans. And I say this not just out of my own personal experience, but the experiences of the people that surround me in this exclusive little cancer community I'm in. I am not alone when I tell you that people you wouldn't expect disappear when tragedy strikes, and people you hardly know continue to stay on your doorstep. It is never as you would expect it to be. We are definitely not elephants.

As I shared during the dinner that night, I liken the tragedy of illness to a fire. When the fire breaks out, everyone is standing around watching and helping as the professionals do what they can to tame the flames engulfing the structure. As the flames die down, the crowd starts to thin. The phones stop recording video, and people return to their routine. Just because the flames die down or go out, does not mean the devastation of the fire is over.

I'm no sicker than I was 2 or 3 years ago. The status of my cancer hasn't changed. I still go to the doctor just as often, and get treatment just as much. And up until recently (thank you preschool!), still juggled childcare while I went off to weekly appointments.  Perhaps my appearance as an active, busy, working mother lessens the tragedy, but this elephant is still down.

And now this parade of elephants that aren't even in my herd have surrounded me. And while I know it's impossible to hang around until I get back up, they've provided me with something so great that will help take care of me while I'm down. And they've done so at the inspiration of their friend, whose battle was not won.

I want to pay this forward now, and I look forward to next year when I can be part of this movement to find another elephant in need. Maybe someone who's been down a while and whose humans have walked away. We need to stay for the long term, and see each other through. And we need to commit to not walk away.


Pioneer Press

In the event you don't follow me on Instagram or Twitter, you might have missed this over the weekend.

In conjunction with Get Your Rear in Gear - Twin Cities on October 11th, I was featured in a little article in the St. Paul Pioneer Press.

It's just little ol' bald me talking about my experience with colon cancer. Click here to read the full article.


Team Colon Cancer Chick - Twin Cities

I can't really start this off by saying "It's that time of year again!"

"This time" last year happened to be in May, and because of a major(ly exciting) change in venue to the Mall of America, Get Your Rear in Gear - Twin Cities is going to be in October. And Team Colon Cancer Chick is going to be there.

I'm only slightly more impassioned for the cause, as I now work for the Colon Cancer Coalition. If you aren't following us on Facebook, Twitter, or Instagram, you're clearly missing out on all the hidden gems that I don't share on my personal social media empire.

I've started my team for the Twin Cities race, but feel free to join, donate, volunteer, virtual run, or participate in any of the nearly 50 other Get Your Rear in Gear events across the country. I see first hand how the money raised at each event gets used to raise colon cancer awareness and promote screenings in each individual city.

This is the largest colon cancer awareness event in the country, and I'm thrilled to be right in the middle of it this year.
Sign up here!


The Elephant Movement

I have the honor, or privilege, or complete blessing to benefit from a local group that wanted to reach out and support a local colon cancer survivor in memory of a friend. I won't go into details on how we got connected, but it was just what the doctor ordered for someone who's been whittling down thousands of dollars in medical bills each year - $100 at a time.

On September 11th, The Elephant Movement is holding a golf tournament in memory of a guy named Todd Eccles. Like myself, Todd was young, healthy, and in the prime of life when a diagnosis of colon cancer was handed to him.

Here's Todd's story, as told by his friend Jodi

"Todd was blindsided by stage IV colon cancer at age 43. He had symptoms, but brushed them off. I recall him calling me and telling me he couldn't ski like he use to, and was always tired. He didn't have insurance at the time, so didn't go to the doctor, which was obviously a big mistake.

Todd was a great skier, athlete, tri-athlete, and was always at the gym. He was in great physical shape. He was a fun loving, free spirit who tackled life on his own terms. He loved the water, and spent many summers on Lake Minnetonka. He wasn't married, but had many, many friends. He was the life of the party and always made people laugh. He had an infectious laugh and never took anything life had to offer too seriously.

Todd and I were friends for many years. He introduced me to a lot of his friends, who are now my friends. He was the common thread between many friendships. He went to St. Cloud State, and worked in the IT field for several years before moving to Denver and becoming a business owner with his sister. I had the idea for The Elephant Movement months before his illness, but it took shape when we had to get organized to plan his benefit. Todd helped shape the direction by telling me about his experience and what he needed. We talked daily when he was able. 

When he called me to ask me to come to Denver for the end, I told him I was going to keep his name alive by having an annual golf tournament in his honor - one that would help another person who shared his journey with cancer. He was flattered and honored. He touched many lives, and was a very kind man. I hope he is always remembered."

Here is what The Elephant Movement is all about:
What is The Elephant Movement? When an elephant is down, sick, or hurt, the other elephants won't walk away until the hurt elephant gets back up. The Elephant Movement was created to encourage people to do the same. When someone you know is sick or hurt, we encourage you to become a champion of them. Most people who are sick need help, but don't know how to ask for it, or they don't want to impose on others. Our goal is to find people who will volunteer to take the lead and gather the names of the sick person's friends and give them assignments. We all have unique gifts and it is important to assign things that match those gifts. It may be giving the person a ride to the doctor, preparing a meal, house cleaning, laundry, child care, or simply visiting them. No one wants to ask for these things, but when someone is sick or down, these things are needed. Be a champion for them. Be an elephant. And whatever you do, don't walk away.
I never talk about medical bills here. And I would never solicit money on my own behalf. I find it awkward, and liken it to throwing my own baby shower and telling people to bring me gifts. But the truth is, it's a reality for me and most people dealing with a chronic medical condition. Maxing out your deductible in a single medical visit is the norm.

From the beginning of my diagnosis, I've never been able to dig myself out. I've gone from holding a private policy with a high premium and high deductible, to a group policy with a high deductible, to another group policy with a high deductible. And medical establishments are kind enough to offer payment plans and never charge interest, but having a high deductible that gets maxed out within the first 2 weeks of every new year is about as thrilling as staying up to watch the ball drop.

I liken it to trying to dig a hole in the sand while the sides continually trickle back in. It's a never ending cycle that I have yet to get a break from. For me this is a chance to pay down medical bills, and an unsolicited opportunity to finally feel a little relief from the constant flow of dreaded envelopes in the mail. A portion of my many loads will be lifted, and for that I'm beyond grateful to The Elephant Movement for the opportunity they have offered to me.

If you are in town and love golf, I invite you to sign up. Kyle and his crew of merry men will be playing, and as the beneficiary, I'll be in attendance. 


From London to the ER Part II

This part of the story includes me utilizing those glorious diapers one too many times, and everyone in the room being none the wiser.

I walked into the ER less than 30 minutes after deplaning, and the place was empty. Not that I didn't think my cancer card would trump most people waiting, but I didn't have to play it, so it didn't matter. Unless I'm feeling like total crap, I keep that baby in my back pocket.

They sat me down and took my vitals. They only thing I heard was that my heart rate was 150, and they were going to put me in room 32. The one place I had been dreaming about over for almost 36 hours was finally surrounding me, and a bed and some fluids were minutes away. After 12 hours of very ill traveling, it sounded like heaven to me. Especially if I was directly across the hall from the bathroom.

After explaining to everyone that I had literally gotten back from London in the last hour, my situation seemed under control. It's not like I was returning from a third world country, but perhaps they were just amazed I made it back in one piece. I was hooked up to fluids, provided one of those special bloody samples for the nurse, and eventually had enough fluids in me to reinflate my veins for blood cultures. Oh, and I let an extremely attractive ER doctor check out my backside.

That very attractive doctor took a look at my ass to make sure the bleeding wasn't coming from hemorrhoids. Apparently me saying, "Yeah, it's not. I can assure you!" didn't work and over to the left I rolled. I missed this part, but according to Kyle he said my back end apparently looked perfectly normal. Only I would take that as a compliment given everything the poor thing has been through.

Parenting with Cancer 101.
I eventually settled off into sleep, and was taken to my room around midnight. Because of my accelerated heart rate, they put me on the cardiac floor so I could be monitored around the clock. I was still violently shivering from the fever as I sat on the edge of the bed and the nurse stuck heart rate monitors all over my naked self. She dressed me, covered me with a warm blanket and told me that was all my little malnourished shivery self was going to get. Apparently anything more than a warm blanket is bad for a fever, but laying in bed shivering violently for hours is fine.

All those heart rate monitors would prove useful a couple of hours later when my heart rate took off and the nurses started pouring in. It was over 150 again, my blood pressure was dropping rabidly, and my fever was rising despite the Tylenol I was given when I got to my room. I vaguely remember looking over at the gaggle of nurses, hearing the word sepsis and starting to really get concerned for the first time all day. I knew sepsis was serious, and finally admitted to myself that I might actually be very sick. The concern turned to fear when a nurse came over to my shivering self and told me I wasn't going to like it, but they needed surround me in ice packs to get my temperature down.

Because my vitals had been so erratic, I was put on the "fall risk" list because of my potential to pass out and hit my head in the bathroom. This included an alarm on my bed, which I didn't take too kindly to. For a girl going to the bathroom every 10 minutes, having to call a nurse was a drag. I got to the point of asking for either a bed pan or a diaper, which I was denied. And what happens when you tell an ornery girl with the runs no? She gives the nurse a reason to change her sheets. A few minutes later, my bathroom door cracked open and my first glorious diaper was handed to me. My first of many, many glorious diapers.

Gloriously sexy diapers. 
The diapers were a lifesaver, as after they released me from solitary confinement in my bed. Making it to the bathroom would still be a challenge for the next two days. Kyle would like me to tell everyone about the time the hospital doctor came in to check on me during his rounds. As he stood there talking, the urge hit. And short of being rude and interrupting him, I utilized the diaper with a smile on my face. He had no clue, but Kyle sure enjoyed the idea that I (who won't event fart in front of him) was sitting there crapping my diaper 2 feet from a total stranger.

The bathroom and those diapers continued to be my friend for the next day, until they ruled out C. diff and I was finally able to take some Lomotil. One dose and things went silent in my gut.

The final verdict was "neutropenic fever and colitis." All samples and cultures ruled out any other type of infection. My body simply freaked out on itself, and my chronic lack of white blood cells. I knew London was not to blame. This was confirmed when the infectious disease doctor finally came in to sign off on my discharge. He seemed far more interested in my trip to London (and seeing Benedict Cumberbatch in Hamlet), than the fact that I walked into that hospital a very sick mess.

This could have happened to me anywhere, in any country. I'm just grateful to have made it almost 4 years without ever being sick while my counts are extremely low. I went home, resumed drinking my daily dose of kefir, and within 48 hours things were back on their very predicable schedule and I was full steam ahead.

Mommy can go to London and the hospital any time she wants if it means
this kid ends up with a giant bar of Cadbury.
At least it's on the rocks, and not room temperature toilet water.
CT time. 4 days without a shower, and a body that's been to the bottom
and back. Oh, and nothing to control that curly mess that's growing in
on top. Results: inflamed intestines (no surprise) and a preview of my
latest PET - a perfectly cancer-free abdomen.


From London to the ER Part I

I went to London.

Two international trips in one summer, I know. That's how I roll apparently.

"Life's short. Live simple. Travel big." - Sarah

Only 24 hours before my departure home, the one thing I've been warned about by every single oncologist happened - I got a fever.

The fever is like this dark boogie man story they tell around the oncology camp fire. You never want to see the fever! Beware the fever! Call us any time of day of you get a fever! My first oncologist even gave me a script for antibiotics and told me to fill it immediately if I got a fever.

The fever start after a night in the bathroom. Nothing shocking there, considering the chemo, so I took the assortment of pills I brought to calm all that down, and off to the Tower of London we went to see the royal jewels before the mad rush. It was there that I just couldn't get warm, and I kept wondering if the back of my neck was just a tad too toasty. It had been years since I had a fever, so I think I was in denial.

By mid-afternoon we were back at the flat and I crashed. I assumed a few hours of sleep would have me back in full form and ready to make the most of my last night in town, but it found me still in bed and starting the adventure that would encompass the next 5 days.

This is where you will want to stop of you can't handle the truth. The dirty, bloody truth. And I'm using bloody in the British sense AND in the literal sense. This is not going to be pretty.

Remember that diarrhea from earlier? Well it never went away, and combined with the fever, my intestines got angry. When the intestines get inflamed, it's something called colitis. And with collitis, comes bloody diarrhea. Only I had nothing left in me, so it was just blood. I wasn't remotely alarmed by this, as I knew my colon was in tip top shape otherwise and I was very well read up on this very subject. The average person would have and should have freaked out, but not a girl who is well read on the subject and is confident in her otherwise healthy colon.

With less than 12 hours before take off, I needed to start formulating my plan to get home. There was no way I was going to give myself over to the NHS, so I needed to suck it up and get thee across the pond. It started with my seat. At this point I was willing to pay those premiums for choice seats if it meant I could be close to the bathroom. Not only had they released all the seats for your choosing, there she was in the last row, on the aisle, directly across from the bathroom waiting for me.

One less thing that required effort.

I spent the flight home trying to look well. I slept off and on, made unnoticable trips to the loo, covered myself in my blanket to hide the shivering from the fever, and dutifully took my Advil before we landed in the event they were scanning people for body heat a la the Ebola days. Why a thought like this even occurred to me I don't know. I just wanted to get back without being quarinteened, and I didn't want to cause some in-flight panic with a fever.

I'm not going to lie, I felt extremely sick. I was very dehydrated, extremely weak, and feverish. My plan was to head straight to the ER once I got home. If I was a normal person with a fever, I would have gone home and gone to bed, but given my compromised immune system and the colitis, I knew the ER was the only option for me.

As we were getting off the plane, I was trying to plan ahead and consider how I was going to conserve the most energy possible. I was going to be in the back of the customs line, and my plan was to just sit and scoot on my suitcase through the long line. As long as I could sit, I would be OK.

Once off the plane, I kept noticing signs for all passengers without checked baggage. Apparently they (me) were to stay to the right, and everyone else was to stay to the left. At this point I was asking myself why I did TSA Pre-Check over Global Entry. The signs kept coming until I came upon 2 customs agents and a sign that indicated they sitting there exclusively for passengers traveling without checked bags. It wasn't too good to be true. There would be no long customs line. Just one man in front of me, and 2 customs agents to handle us both. Wtihin 3 minutes I was through customs.

One less thing that required effort.

Having run this international terminal drill at ORD on my way out of town, I knew there would be a tram and I would have to go back through TSA to get to my domestic gate. A quick check of my UK-printed boarding pass showed that it did not bear my beloved TSA Pre-Check mark, and as I came down the escalator from the tram, I could see the long TSA line. My exhausted body wanted to collapse at the though of waiting in it. I considered pleading my case to a ticketing agent, and then decided to take my chances at a domestically-printed boarding pass at the kiosk at the foot of the escalator. Surely they would let me print a new one, right?

"Hi, Sarah. Would you like to reprint your boarding pass?" Why yes, yes I would. And through to a completely empty TSA Pre-Check line I went with my newly printed Pre-Check bearing boarding pass.

One less thing that required effort.

My next obstacle was finding my gate and its relation to a bathroom. Worst case I thought I could position myself between the bathroom and my gate, and just hover until it was time to board. The women's restroom ended up sharing a common wall with my gate.

One less thing that required effort.

Then I crossed my fingers and hoped this would be one of those full flights where they were begging people to check their carry-ons to their final destination. I didn't have the energy to lift that baby one more time and try and cram it into an overhead bin that was packed with improperly stowed carry-ons. Suitcases go straight in with wheels out people. And if it fits under your seat, put it under your seat and save the overheads for those of us with suitcases.

"Ladies and gentlemen, this is a completely full flight, and we are looking for volunteers to check their carry-ons through to their final destination." Ding, ding, ding! Let me be the first to hand it over.

One less thing that required effort.

I curled up in a cold metal cafe chair by the bathrooms, rested my head on the wall, and waited to board. On the jet way, I could feel myself weakening, and leaned up against the wall to support myself. I just kept begging myself not to pass out, and knew I was bad enough off that I was going to need a wheelchair to meet me at the gate. Unable to find the option to request one on the Delta app since I had already checked in, I texted Kyle and told him to try get me one. It was the last text I sent before we took off, and the reply upon landing let me know I was going to make it.

There on the jetway, holding an iPad with my name on it, was the man who would push me down the home stretch.

One less thing that required effort.

The wheelchair took me to baggage, and Kyle took me straight to the ER, where I walked in and told them I was neutropenic, running a fever, and shitting blood. That right there is how you get admitted immediately folks.

And thus ends Part I of this story.


Chemo Phone Dump: Summertime Edition

It's time for my annual summer o' chemo phone dump. Also known as my life with cancer, as seen through my phone.
My caregiver.
Doors off and all my hair blowing in the wind.
Compression on and elevated during treatment. You can see
how my left ankle is slighter bigger than my right.

My sweetest boy doing the parade thing.

Dutifully taking care of me, and eating all the cookies and snacks they have
in the infusion room.
Multi-layer wrapped and elevated. Also known as the Mummy Leg.
Chemo buddy.
The engineer must understand how this machine works.
Won't do a scan without it.
Compression tight on. Leg elevated. Netflix on.
Giving my left leg a little more help with some pre-bed elevation.
Clearly the compression tight is helping to keep it nice and pasty during the summer.


Cuddling on the Couch

I have been cyber stalking my future boyfriend for weeks, and anticipating his inclusion in my other evening romance - Netflix. And last week, he finally knocked on my door.

As much as I'm trying to put on a happy face about this whole lymphedema thing, I'm still wallowing in my own Spanx-covered poopy pants. I've spent the past few months altering my wardrobe, and dreaming of winter, where I can completely hide all signs of a compression garment under big coats and knee high boots. I'm also looking forward to the colder weather, as nothing makes the uncompressed portions of my left foot swell like a nice, hot day.

My physical therapist mentioned the Flexitouch at my first appointment, but at that time I was still trying to absorb the fact that I was now the proud owner of another chronic condition that would include further damage to my vanity. I went to see her last month, because my returned-to-previous-size-as-long-as-compressed leg was not cooperating. It was "flaring," and no amount of self-giving manual lymphatic drainage, doing up the Mummy Leg, or wearing a daily compression garment was getting it back down to a size worthy of my vast collection of skinny jeans. She mentioned this magical machine that simulated the manual lymphatic drainage she was doing in office, and told me it could be mine in the comfort of my own home.

The orders were signed, my insurance would pay for it, and I got a little taste when a Product Specialist came by the house to give me a demo. Poor thing arrived about 30 minutes after my home care nurse came to disconnect my pump, so she didn't realize she was dealing with Chemo Drunk me who hadn't bathed or brushed my teeth in 3 days.

My boyfriend is now here, so enjoy this photo montage of our new relationship, and bask in the chronic glory they call lymphedema.

Sorry kids, you're going to have to meet your own needs for the next 60 minutes.
A Kenny Powers-endorsed evening of fun.
Post-Flexitouch lumpiness. Push on it and it feels like a Tempurpedic leg


Read Me: The New Cancer Survivors

A fellow young-cancer-fighting-mommy friend sent me this article on my last treatment day. I was home from my infusion, and deliriously tucked into bed like a drunken sailor. But even my foggy brain perked up and soaked in every word.

I loved it, because it said exactly what I want to scream at so many people (including doctors who don't read my file before seeing me) who give me that ahhhh-you-have-stage-4-cancer-and-are-terminal look.

I am not terminal. I'm chronic.

Read this, and know it feels like my personal anthem.


Spanx to the Left

Nothing says let's go outside and enjoy the warmth of
summer like these multi-layer accessories!
I finally got over my laziness and went out and bought my first pair of Spanx.

I just couldn't deal with my left butt sag anymore. This compression tight I wear on my left leg is designed to go all the way up to that fine dividing line between butt and thigh, which is awesome for someone who carries 95% of her body fat right there. You know when you squeeze a balloon animal and one end gets big from all air? Use that as a visual for what was happening here. The garment was creating a butt lump, or what I've taken to calling The Blump. There will be no illustrative ass photos here, so use your imagination or go buy some balloons and start squeezing.
Good times.

I know far too many women who don't leave the house without their Spanx on, so I hoped they could do the mighty job of smoothing things over back there. Within 30 minutes of putting them on, I think I dislocated my downstairs lady bits. Within an hour my intestines started to cramp. And by the end of the evening I couldn't pull them off fast enough.

But like any good soul, I asked them out on a second date. We are going to have to make this relationship work for the sake of 80% of my wardrobe and the even appearance of my backside while fully dressed. At least I don't have that extra 10 inches of colon taking up space, so make room intestines! My internal organs are just going to have to take one for Team Vanity here. I've adjusted my wardrobe accordingly, and added a few maxi dresses to the closet, making my compression garment much less noticeable to anyone not paying attention, which is probably most people.

Cheers to the rest of summer, and my unevenly tanned legs.


Public Baldness

I have never been the type that enjoyed having my photo taken. I think it's for the same reason that I'm not one that really likes to go all out in celebration of my birthday. And why my few existing selfies have been used to illustrate a point, and not show off my ability to spend 40 minutes taking pictures of myself until I looked like I wasn't trying, by actually trying too hard.

I just don't like the attention.

Odd for a girl who writes a blog and spills all her dirty bathroom secrets, yes, but there's something to be said for hiding behind my words on what started as an anonymous format.

This same desire to avoid attention is probably why I have never walked around with my bald head in public. It's not that I was uncomfortable with my temporary look. At this point, I think I've lost my hair enough that I know how to roll with it in any situation. I just don't want to draw attention to myself, and I certainly don't want people to notice me. To each his own, should you be someone who is bald and proud.

So with great hesitation, I took myself far outside of my comfort zone and not only let myself be photographed for the purposes of public display, but let it be done with only a few weeks of that baby soft regrowth we all love to rub like a Chia Pet.

My face and head will appear on marketing material for a few Get Your Rear in Gear races this year. I'm sucking it up and taking one for the team here. Or rather sucking it up and doing whatever it takes to get people's attention about colon cancer. Or maybe just sucking it up because I do work for the very people putting on the race, so it's almost like I'm being paid to do it.

Regardless, it saved me from having to find some book on "self-growth" that's on the shelf by the bathroom at Barnes and Noble. Standing in front of a professional photographer's camera was growth enough.

I'm penciled in to be at the Boston race, should you happen to live there and want to come!

As you can see, I've somehow managed to grow hair while on Irinotecan, which is clearly a drug that has made me lose hair and keep it lost until I stopped taking it. This time around, it all fell out right away, and then I slowly started to get the fuzz. It's a mystery, and perhaps I'm the only one to manage such a feat while on the Destroy of Bowels (and hair follicles), but I'll take it. I'm already to the point to self-trimming my mullet, and applying hair gel borrowed from a 4-year-old that smells like a drunken coconut.

Photo by Laura Rae Photography - Minneapolis.


The Past Two Months

The last few months haven't been uneventful, but life in Chronic Cancerland is never uneventful. What they have been is one giant vacation from chemo, thanks to travel plans, social conflicts, a lingering cough, and my own willingness to eagerly skip a treatment with the slightest excuse.

As expected, I have enjoyed feeling great week after week, and pretending that I'm totally normal. Man do the normal people take for granted feeling great all the time. Somebody needs to slap them every once in a while and remind them to appreciate it!

After 2+ years on Avastin, by kidneys finally decided to tank. Avastin is a cancer drug I've been getting along side my chemo. It doesn't make me feel bad, so aside from the blood clots I blow from my nose every morning, I don't know I'm on it. But mighty drugs are never that simple, as it can do things like raise your blood pressure and destroy your kidneys. I got off easy until recently, when I started "spilling protein" in my monthly urine sample. After voiding a few gallons of golden goodness for the lab, it was determined that my kidneys weren't clearing up on their own, and Avastin had to go. This happened around the same time that my left leg started swelling, and the lymphedema label was slapped across my rather smooshy thigh. There is a correlation, so just hold tight for a second.

Compression, Caribbean-style.
While sitting on the exam table before my last treatment, I held out my newly diagnosed and heavily wrapped Mummy Leg, and said something to my doctor about lymphedema. Of course I had it! I was certain! It made total sense! He looked at my leg, and with the wave of his hand, blew off my declaration and mumbled something about it just being my kidneys. Deep down my little tiny ego got excited, and I thought that maybe I could scoop my vanity up off the floor and hope that this would go away once my kidneys were back to normal. Maybe this wasn't full blown, fashion-altering lymphedema after all?

It's been over 2 months, and I have to say my oncologist might have been on to something. My kidneys kicked it back up a notch, and my lymphedema took it down a notch. My swelling is contained to just my ankle, and I'm finding if I balance it just right, I can go a day or 2 without having a compression garment on my leg during the day, and just wrap it up at night. Or wear my fancy tight during the day, and go bare-legged at night. Or wear all those compression socks I bought back when I was running, and walk around like I just finished my long run and am recovering.

Is it still considered lymphedema? Totally. The swelling is a direct result of my missing lymph nodes in my left pelvis. The "flair" that caused my entire leg to swell was probably due to my kidneys not flushing out waste at full capacity. Does my lymphatic system still need a little help and support on the left side? Absolutely. Can I go back to my normal life of enclosed shoes and skinny jeans? Totally. Am I thrilled? You betcha!

Post-script: My most recent PET scan once again revealed that my cancer continues to be in (and only in) my lungs. I am still responding to Irinotecan (this is my 3rd summer cycling through the Destroyer of Bowels), which is amazing to say the least. Here I am, 3+ years later and my tumors are still being measured in millimeters. Irinotecan is controlling the growth of the cancer. As much as I hate being sick, it's nice to know I'm not being sick in vain. 

As a miraculous bonus, I've managed to start growing hair again while on Irinotecan. This is the very drug that has caused me to lose hair 3 years running, so the fact that it's growing back is an unexplainable perk. I can assure you all bottles of Rogaine are on full alert and maximum use.


The Mysterious Case of the Swollen Leg

I'll solve this one faster than Sherlock Holmes for you.

It's lymphodema.

It's just one of those things that can happen when they remove lymph nodes from your body, which they did 3 1/2 years ago. It makes sense, given that the tumor and those fateful lymph nodes were in my lower left pelvis, and now my left leg is swollen past the point of fitting into every pair of jeans I own.

My lymphatic system has done a great job of keeping up, but for whatever reason, it's time has come and it's not able to drain my left leg. 2 weeks of daily PT to massage and wrap this sexy beast will hopefully get the fluid moving, but I'm looking at a potential lifetime of wearing a compression tight on that leg. How often and how long I'll have to wear it is yet to be determined. That's up to my leg. But it could be a 24/7 addition to my wardrobe, or something that I can wear purely based on swelling. In the mean time, those maxi skirt wearing Duggar girls might on to something when it comes to keeping your legs covered. I might have to join them.

I officially have my first surgical complication.

Toe to thigh layers. Padding. Layers.


My Left Tree Trunk

The mystery of the swollen leg started in January, when I returned from a trip to LA with a plumpy left ankle. This also happened to be during my first round on the chemo pills - Xeloda. I blamed flying, and vowed to wear compression socks on all future flights.

The ankle never really returned to normal, and I just admired it every night when I went to bed. The swelling was usually so mild, that only a vain person like myself would even notice. I casually mentioned it to my doctor, he casually mentioned an ultrasound, and we both casually never brought it up again.

But the swelling never went away.

At the beginning of this week, I was sitting at work and could feel the swelling work its way up my leg. The pressure and the feeling of the skin pulling could only be likened to a balloon being squeezed all the way up to my groin. On went the compression socks, there went the thigh gap, and on went the swelling. For once I was able to walk into the doctor's office with a complaint that you could actually see.

The ultrasound showed nice, clear veins and arteries, so a blood clot was ruled out. And much to my disappointment, so were diuretics to help me flush this fluid away. The theory at this point was that all those bags of fluid I had gotten the week before were taking their time getting out of my body, and had taken up residence in my left leg - which felt like a tree trunk about to burst.

There were no skinny jeans or knee high boots on tap this week. It was all about stretchy and slip on for this girl and her cankle.

I was told that diuretic (or water pills) would not be a good idea since my potassium was still running a little low. One suggestion was that I eat more protein, and considering I have issues with meat, this could only mean an extra spoonful of peanut butter every night and more ice cream. Otherwise, it just was what it was.

Only I can't just accept this as a side effect of treatment or just the way it's going to be. Over 3 years of this and I haven't really had any major issues to complain about outside of the usual temporary side effects.

I had to do some real soul searching here, pop a few anxiety pills, and start pep talking myself back onto that Damn Pump. It didn't take a calculator for me to add up all the weird things that have happened over the last few months and align them with my switch over to the Xeloda pills. As much as I loved the pumpless freedom, I was starting to wonder if Xeloda and Irinotecan weren't a good combination for me. Perhaps I should go back to old trusty? Especially if I know a home care nurse can come unhook me and I don't have to drag myself out of bed and back into an infusion room. Maybe I'll go back on that Damn Pump just so I can at least look like I have a normal life every other week.

Things to ponder, while I use a vibrating frog from Merrick's collection of unusual gifts to massage my leg 5 sizes smaller. Vanity may win this battle.


Through a Straw

I've been a lazy blogger lately, and it's not for a lack of things to blog about. My world has been spinning with things like treatment, head shavings, work, colon cancer awareness month, and what any nice Southern belle might call "pooping through a straw." There is no more lady-like way to put it, and no more descriptive word than water. And it has consumed me, and any toilet within sprinting distance.

It started a few days after I enjoyed an unexciting salad while out to dinner. At first I blamed that little bit of gluten I had. Or maybe it was the dirty lettuce. All I know is I finally busted out the Imodium, which is something I never take - even when Irinotecan is destroying my gut. One dose and I'm good for days. And I don't like to be good for days.

Only 1 dose did nothing. Neither did the next 5 doses I took. I made it 6 days until my next oncology appointment, where I specifically told my doctor that I thought it was something I ate. I had yet to start the famous Destroyer of Bowels - Irinotecan, and he didn't seem concerned.

He prescribed Lomotil, and told me to take it every 6 hours. A week later, it was doing nothing to help the problem and I was bumped up to every 4 hours, alternating with Imodium. It had zero impact.

Hello, Xombie Hands!

He then prescribed Opium. Yes, THE Opium. Before you get excited and want to come over and try and get high with me, let me tell you that the stuff smells like jet fuel and tastes like rotten petrol. I managed to get it down mixed in a glass of OJ. 2 days later, it was also doing nothing to help the problem.

This is where the story gets exciting and perhaps a little graphic for those of you too embarrassed to talk about what goes on behind the bathroom door. I went into oncology, where I provided 10+ tubes of blood, and pooped in a bowl. Trust me, this wasn't the first time. Or the second. Or the third.

I wasn't given a bowl and a test kit hidden in a opaque bag and sent home. The bowl was placed right there on the toilet in the infusion room. I tell you, there is no other place where bathroom activities are talked about more than in an infusion room. Everyone is in the same boat, so you will get nothing but empathy, a listening ear, and some nurses who have seen it all.

I had the joy of opening the door of the bathroom and inviting my nurse in to collect what she needed. At this point in my life, I can have no shame in this department. The things that have been done to my body on the operating table are far more traumatic than having a nurse scoop your poop. It's reasons like this that I was not cut out to be a nurse. For as much as my own diagnosis revolved around poop, I can't handle it myself. Or at least handle yours.

At this point, I was sure my samples would come back to say I had c-diff - a lovely little superbug that has found its way out into the general population, and is referred to as the "deadly diarrhea" for the numbers of people it kills each year. I was also swearing that I had cholera, or some other 3rd world disease that would have killed me had I not had access to all the Gatorade I had been drinking.

The test for c-diff, listeria, salmonella, and e. coli all came back negative, and my life continued to revolve around when I ate, how much I ate, and where I was 6 prompt hours later.

In the mean time, I moved on to a shot - something called Octreotide Acetate. I started with 7.5ml 2 times day. Within a week I was up to 1.0ml 3 times a day. After another week I finally threw in the towel on the shots as they were clearly not helping at all. 

After my last round of chemo, I headed straight to DC for an colorectal cancer advocacy event, where I dragged my dehydrated self around the Capital and all the way back home with that happy face I'm accustom to wearing despite the misery. By the time I got off the plane, I could barely stand up, and weighed 18 pounds less that I did 4 weeks before when this started. This is not an exaggeration. I knew I was going to oncology the next morning, and also had a gastroenterology appointment I had been looking forward to for over a week. There was no one more excited about going to see a gastroenterologist at this point. Given that I still have 99% of my colon, the services of a gastro aren't something I need.

3 bags of fluid, electrolytes, potassium, and one dryly humorous gastro later, I saw what I hoped was the light at the end of this 4 week tunnel of horrendous fluid export. I was off all chemo until further notice, was scheduled for a flex sigmoidoscopy (to take tissue samples), and was bringing in my own samples to be tested for a few more parasites that can be found on dirty lettuce: giardia, cryptosporidium, and cyclospora. Try scooping up water with a tongue depressor if you want to know how much I suck at that whole "samples" bit.

After a fun afternoon laying on my left side and admiring the inside of my very healthy colon, I left with the hope that I could be well on my way to normal again soon. Little did I know normal would finally come on its own less than 24 hours later. Before a diagnosis could even be delivered, everything slowed down and returned to normal.

A week later and I'm still waiting for the lab results from my samples. In the mean time, I don't have Celiac disease, tissue samples confirmed I still have a very healthy colon, and I'm pretty certain I won the dirty lettuce lottery. As I work to put a few pounds back on before resuming treatment tomorrow, I can safely say it will be a while before I order a salad at a restaurant again.


The Dead Cat Named Clarice

The day I got bangs cut on my wig was the best. For once, I felt like that faux-hair looked a little less like a wig, and more like a banging' hair style I could never pull off thanks to those 2 God-given cowlicks I have right in front.

I came home from the salon, whipped up some homemade nuggets for the kids, opened the oven and put them in. Little did I know that whole warning about heat and my fake hair extended beyond hair dryers and flat irons!

I singed my bangs, and subsequently spent hours with a tiny pair of beard trimmers trying to salvage what left of my own, personal Zoey Deschanel moment.

That was 18 months ago, and I've just never loved the wig the same since.

It's a good thing we had such a detached relationship. It lessened the disappointment when I opened the washing machine and realized I had carelessly chucked my wig in while unpacking my suitcase from my recent trip to DC. Apparently carefully wrapping it in a t-shirt for the trip home in my suitcase wasn't the best idea after all.

Out of the washing machine came what can only be likened to road kill that had been shoveled off the asphalt. As I walked down the stairs with my dead pet, I noticed Merrick sitting so quietly at the bar, and couldn't pass up the opportunity. I squatted low, screamed "DEAD CAT!" and chucked the matted mess at him.

I'm sure he was traumatized enough that he'll have to add this to the list of all the other issues he's going to be working through with his future therapist.

Clarice the Wig will be buried next to that dead bunny the kids found when the snow melted. May they keep each other company on the other side.