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.


Jennie said...

Hi, I just came across your blog. Since reading a few of your posts I have been googling but not finding the info I need. I was wondering if you know whether there are precautions we can take to try and avoid developing lymphedema? Or it just happens if it happens and then you deal? I knew it could affect breast cancer survivors but it never occurred to me I could be at risk as a colorectal cancer survivor...thanks for spreading awareness..

Sarah DeBord said...

I have no clue if there's a way to prevent it. My original therapist told me it could be triggered illness, or even flying (when I first noticed swelling was after flights). When the major swelling first happened, I had not only been flying that week, but battling food poisoning. I've heard it is most likely to happen within the first year, and for me it was 3 years. That same therapist said she had a women walk in 30 years after having lymph nodes removed with it. I think the most important thing is knowledge. Had I recognized the minor swelling I had in my ankle months before it overtook my whole leg, I wonder if I could have contained it with proper care then.

Unknown said...

Wrapping has made my skin unbearably itchy? Ideas?