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.


2.22.2016

The Case of the Awkward Girl Who Looked Forward to Chemo

I've hunkered down since Thanksgiving. With no travel and no conflicts, I had no excuses to play around with my chemo schedule and throw in that extra week or two in between treatments. I'm so grateful that my little tumors give me the option of the shorts jaunts off the recommend schedule, but it was time to get this train back on the treatment tracks, and remind those babies that they should be getting their bi-monthly

Thanks to my (technically) official oncologist changing up his clinic schedule, and my unwavering desire to only get infused at my current (and beloved) infusion room, I see my (unofficial) oncologist on Fridays now. This is only possible because my insurance covers home care. I highly recommend this to everyone on That Damn Pump. I'm sure I had this option for those first 2 years that I dragged my sick, braless self out of bed and back into the bloody oncology building for my disconnect, but no one bothered telling me. You can thank me for this life changing advice after you sit on your own couch, in the pajamas you've been wearing for the last 48 hours, and casually let a nurse have their way with you.

I've been tolerating FOLFIRI amazingly well. If you were to see me, you'd never know that this very treatment sent my weight plummeting into the double digits twice over the last 3 years, or left me deliriously high on nausea pills in a dark room for days. For the last year, I've come home from treatment, plopped down in bed with That Damn Pump, and spent the weekend wide awake, craving comfort food and Netflix.

Medical experts are at a loss to explain my miraculous tolerance on something that has otherwise incapacitated me. I just shrug it off and give all the glory to my favorite antiemetic drug Emend, while shoving an entire gluten-free pizza into my mouth. Somewhere in the background, The Real Housewives of Somewhereinamerica screaming at each other provides the ideal ambient noise for a nap.

My most recent scan confirmed that FOLFIRI continues to work. Nothing has grown, nothing new has (ever) grown, and it's business as usual for the next 3 months. My oncologist showed me the pictures from my scan, and I must apologize to every radiologist I secretly called lazy for never actually counting all my little tumors. Simply calling them "innumerable" in every report just seemed half-assed for something getting paid a lot of money to count them.  They may be tiny, but by golly there really are too many to count - like sprinkles on a cupcake. But there they all sit, most never really ever having grown, yet still making things appear more complicated than they really need to be.

Despite my private weekend parties with Netflix and 500 calorie containers of the most amazing gluten-free macaroni and cheese ever, I don't bounce back like I once did. I find myself living off my nausea pills after those antiemetic drugs wear off, and coming home from work to take a nap before picking up the kids. What was once an intense few days of feeling craptastic and moving on, has turned into an elongated stretch of couch time that surpasses a week post-treatment.

But I don't mind the grind, as I know it keeps me alive. It helps that I have amazing mental resilience, and rarely let my future of infinite treatments get to me. Daily I hear the stories, and connect with the people in my little community that aren't responding to the toxic crap, continue to have new spots show up on each scan, live with chronic pain from tumors growing in all the wrong places, and hope the newest drug gets approved before time runs out. I freely admit to complacency, when I really should know better.