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.