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Can you say Mummy?

My left arm and hand were swollen.  I went to see a lymphedema specialist, Dr. Riutta.  Yep, I had it.  I knew about lymphedema as my mother experienced it when she had breast cancer.  I figured I’d be given a sleeve and call it good.  I had tried to see Dr. Riutta as soon as I was done with chemo to be preventative with Lymphedema.  Unfortunately, he cancelled on me twice.  By the time, I got to see him, I had developed it.  He’s a funny guy with a great sense of humor.  I like him.  He took measurements of my arm, confirmed that I did indeed have it and ordered physical therapy.  No sleeve as yet.  They needed to get the arm back to normal.

I have to have physical therapy twice a week.  I’ve chosen Tuesday and Thursday.  I've made my appointment after my radiation.  I met my therapist Amy and find out I will be having a lymphatic massage along with wrapping of my arm and hand.

I lay on a bed with my feet propped up.  She gently massages different lymphatic points.  This is to stimulate the rest of the lymph nodes to “pick up the slack” from the left side.  It’s painless and done quickly.  Now on to the wrapping.  Let’s put it this way, by the time she’s done, my arm looks like the mummy.   I have a mummy arm, seriously!  Thank God, it's my left arm!

Bob is videoing the procedure as he will be the one wrapping me at home.  Aquaphor is slathered on my arm, followed by a mesh sleeve.  A cotton covering is wound up my arm.  Each finger is wrapped and my arm is wrapped 4 times with tight ace bandages.  My arm can't move.  I can’t bend it, my fingers are completely immobile, I feel stuffed.  I have to leave the bandages on for 48 hours.  I’m allowed to take them off, shower and then put them right back on.  It’s like we’re squishing the extra liquid out of my arm.  Whoo hoo something new to adjust to.

On Saturday, I take of my bandages.  I happy to do it, since it’s actually been a little painful.  My fingers feel like their choking.  I have four bandages to unravel, a cotton wrap, an arm cover and bandages on my fingers.  (Can’t wait to roll all this stuff back up!)  I finally get everything off and look at my hand.  It blows up before my eyes.  It looks gigantic.  I can actually push my finger into it and make a huge indentation.  It’s squishy.  I’m concerned that it’s this puffy.  I start to panic a little.  My hand looks like the Michelin man’s hands.  Yikes!  Bob begins to massage my hand and arm and it begins to go down.  I put my arm in the air thinking that that will help.  Something doesn’t seem right.  My arm is supposed to absorb the liquid not blow up.  Eventually, the swelling goes down.  I refuse to wrap my hand that night.  I give my arm a rest and wrap it on Sunday night.

Broken ankle and now lymphedema.  My entire left side is a mess.  I have a cast, crutches and now mummy arm.  Can’t wait to try to change into my gown for radiation.  I’m actually laughing when Bob takes me to radiation.  I check in and get the “are you kidding me” look from the receptionist.  Never a dull moment I tell her.

Changing is a trip.  I can’t access my fingers.  They are mummified in addition to still having neuropathy.  I grab the xxxl hospital gown.  It ties at the top and I figure it might be easier to get into.  Slightly better but I have a hell of time trying to tie it.  Finally in my gown, I go sit in the waiting room. When you receive radiation, it’s always the same time every day.  You get to know your fellow patients.  Carol saw me the first day I walked in with my cast and was amazed I was still smiling.  When I walked in on Friday with my mummy arm she was in shock.  I tell her you’ve just got to laugh at this.

When Nancy comes to get me, the look on her face was priceless.  I resisted the urge to put my arm up and make a mummy sound and instead just started laughing.  I gimp down to the radiation room and am met with the same incredulous looks from James and Melissa.  Once again resisting the urge to make a mummy sound.  I finally untie my gown but need help taking it off.  Green towel covering me, gown off, I gimp on to the table.  Whew!  Now the concern is whether “mummy” arm is going to fit into my mold.  Momentary panic, as I don’t want anything inferring with my schedule.  It fits, barely, but it fits.   I’m put into position, Gladys in place, hand on panic button and off we go.  Radiation take two is complete.

With my whole left side “mummified” I have a hard time getting off the table.  I know what a turtle feels like when it’s on its back.   I get helped by James who lends me his arm.  Nancy helps me into my gown.  Between being mummy wrapped and the neuropathy, I just can’t tie it.   Radiation angels to the rescue, they tie my gown and I’m ready to go.

When I came back from radiation my new pal, Carol is on her way to treatment, she stopped me and said “You know I was feeling a little down about myself and then I see you the last couple of days and think  - I’m fine.”  If you can be so upbeat with a broken ankle and wrapped arm, I can do this.  My mishaps made someone glad today – it is a good day!

I later find out I was wrapped incorrectly the first time and that is why my hand blew up.  I change therapists and am with Monika.  She does wonders.  At the end of six weeks of therapy, I see Dr. Riutta and my arm is completely down.  I don't need a sleeve - whoo hoo!  I do, however, need to wear a hand compression glove as my hand and fingers are not completely down.   I will wear this on the plane to Ireland and I will bring my wrapping stuff just in case it blows up, but otherwise I’m good to go.  The only real casualties from having lymphedema?  My wedding ring is too small as my fingers have gotten bigger and I can’t have my cuticles cut when I get a manicure.  No big deal.

Dealing with lymphedema will be lifelong.  A sunburn, heat from a sauna, bumping my arm, even a mosquito bite can make it flair up.  But in the grand scheme of things, it’s nothing.  Just a new normal.

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