Day +999: Well, we all have a face that we hide away forever…

“And we take them out and show ourselves
When everyone has gone.
Some are satin, some are steel,
Some are silk and some are leather.
They’re the faces of a stranger,
But we love to try them on.”

8/25/2013: I’ve meant to write an update for quite a while but, as usual, “procrastinate now” has been in effect. It’s hard to believe that summer is nearly over and in a couple of hours I’ll be 1000 days post bone marrow transplant! Wow.


I saw a lymphedema therapist at Johns Hopkins (Greenspring Station) on July 24th. My intention was a single consultation to verify the extent and treatability of my neck and head lymphedema and to ask them to recommend a therapist closer to home. However, I was so impressed with the therapists and other staff that I opted to continue my treatments there. The drive is 45 minutes each way but there’s a great creamery halfway where I treat myself to freshly churned ice cream with hot fudge after every PT session.

You may recall my local physiotherapist, Suze, had no experience with lymphedema but read about it and massaged my neck each session last winter to move the fluids. I learned from my Hopkins therapist that general lymphedema therapy certification requires 140 hours intensive training (30 hours online plus ten 11-hour days classroom and hands on). Another 50 hours training is required for head and neck specialization.

On my first visit, the general lymphedema specialist, Heather, examined me thoroughly, checked range of motion, and took many measurements. The goal is to teach the body new pathways to drain the lymph into arm pit and abdominal nodes through massage, sleeping on a wedge pillow, and wearing a custom-made compression mask at night. She taught me the first couple of techniques to use at home:

  • Breathe in, expanding stomach while pressing with one hand on left side, and breath out pressing the right side with the other.
  • Cross arms over chest and locate “wells” on both sides at base of neck/top of collar-bone. Use flattened fingers to pull skin down without sliding fingers across skin.
  • Repeat each 5 times daily.

    I was then scheduled for six visits with a head and neck lymphedema specialist, Kathy: July 30th and August 1st, 6th, 8th, 13th, and 22nd. On my first visit with Kathy, she gave me a temporary mask she’d made from ace bandage material and velcro to use until I get something more permanent. Each visit, Kathy reviewed earlier techniques, observed and corrected as she watched me do them, added a new technique, and massaged my head, face, and neck with her hands and with a Lympha Touch suction machine. She said the body would never be fully retrained and that I’d need to use the tools and methods she taught for the rest of my life. A brief summary of what to do daily:

  • First do the exercises Heather taught me, then massage the area around my arm pits to open pathways, working upwards and inwards to the base of my neck below my scars and then back down to my arm pits.
  • Use a single finger to gently massage the inside of each cheek, a path from back to front. Repeat 5 times.
  • From the top down and ears toward chin, use four flattened fingers to pull the skin, without sliding, in semicircles along pathways to the opening between scars at the base of my neck. Repeat each pathway 5 times. Pay extra attention to working the scars along the paths.
  • Using the same motions, follow pathways from the base of neck to arm pit on each side, repeating each full path 5 times.
  • Sleep on a wedge-shaped pillow to help drain fluid at night.
  • Wear a facial compression mask at night. These are custom-made from quilted, padded material measured to fit each person according to need.
  • In the morning, do a series of facial exercises while still wearing the mask – lifting eyebrows, making a “worry” face, “fish” face, jutting jaw, “surprise” oh! face, etc.
  • Fortunately, I received written instructions with diagrams. I’m easily confused with these types of tasks.

    I’ll buy the wedge pillow myself but the custom masks are ridiculously expensive, thousands of dollars, and insurance covers only a small part. However, my therapist and the mask distributor are working on alternatives to greatly reduce the cost for me. When I look at the masks, I can’t help but think how overpriced they are, another example of the insanely inflated prices of medical equipment and procedures. The excuse is “But they’re custom-made!” My reply is that I could get a custom-made Italian suit for that price, sewn from more expensive material and more complex pattern. Someone is making an enormous profit! My friend, Toby, sews quilted household and personal items and does custom orders. I think of the mask being rather like one of her custom appliance covers that sells for well under $100. Toby, you’re in the wrong business! With your skills, you could make a fortune.

    I’m waiting for Kathy to contact me with an appointment to be measured for my mask. Then it will take about two weeks for it to be constructed, after which I’ll return a couple of times to make sure it fits correctly.

    The midnight hour is fast approaching, and I have contractors coming early tomorrow to start work on a retaining wall in our front yard. I’ll write more tomorrow. Lots of catching up to do.

    Goodnight all!


    1. Sounds to me like a lot of dedication to keep doing all those exercises! I know you; it will be done. See you soon. Love you.

    2. Mike Kienenberger

      So now you just need to make all your regular morning faces with a mask on? 🙂

      I remember that song. Billy Joel, the stranger. I think that was on the first cassette tape I bought.

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