Lymphedema Therapy in D.C.

May 11, 2010

Looking for a lymphedema therapist or physical therapist in Washington, D.C. or the surrounding area?  I’ve seen a BUNCH of them, and these are my absolute favorite physical therapists who I would recommend to any breast cancer survivor (or new mom, cough cough) in Maryland, Northern Virginia, or Washington, D.C.

Bretta FabianBretta Fabian. Bretta is my all-time favorite physical therapist.  Her years of training and experience have helped her get directly to the root of the problem and know exactly what to do to help get the body back working the way it should be.  Over the years, Bretta has eased the swelling in my arms, taught me manual lymph drainage techniques, stretched the cords of scar tissue running up and down my arms until they gently release (important both for lymph drainage and mobility), manipulated scar tissue on my chest (to relieve pain and unbind the muscles), put my back back in joint, and realigned my pelvis after childbirth (ooh, that was embarrasing to type. But if you’ve ever had that pain, you need to know there’s help out there, and it may only take one visit).  Bretta is affiliated with the George Washington University Medical Center and works closely with their surgeons.  The only drawback is that her practice does not take insurance or medicare, so you’re on your own.  Bretta is at the Center for Wellness Solutions, 202-862-0770.

Vicki and Janice at The Adventist Rehabilitation Hospital of Maryland.  Adventist Rehab has five lymphedema specialists.  I have been very happy with and can highly recommend Vicki, who trained under the founder of the Norton School of Lymphatic Therapy.  Vicki helped me understand how the lymph system works, both verbally and by referencing the instructive posters that surround the treatment area.  Vicki is a master at lymphedema wrapping, has instructed both my husband and me in manual lymph drainage techniques, and has a cheerful, supportive demeanor in all that she does.  Vicki is creative and helped me find lymphedema wrapping materials when I was allergic to everything she’d worked with before.  She also returns phone calls from current patients and aids in ordering lymphedema sleeves, gloves, and nightwear garments.  Adventist Rehab also has a half-dozen or more physical therapists at each site who are highly skilled in a number of different hands-on and rehabilitative therapy techniques.  Janice in particular is a real treasure for hands-on work including scar tissue manipulation, muscle-energy techniques, and rehab to restore everyday function.  (Both Vicki and Janice are referred to here by first name only, as they don’t have a web presence of their own.)  Adventist accepts many forms of insurance with a physician’s referral.  240-864-6200.

Katina Marinos, MPT, is the chief physical therapist at a small practice in Rockville called Manual and Sports Therapy.  Her specialties, as you may be able to tell from the name, are manual work and sports medicine, although she worked for years with an orthopedic medicine group and has an exhaustive knowledge of the interplay between the bones and muscles, making treatment comprehensive and effective.  Katina is a physical therapist who can take you from couch to marathon, as both she and her almost 70-year old father have run marathons in the past few years; she trains people of all ages and abilities to run well and without injury.  This family-run, woman-owned business is a comforting, encouraging place to heal, and Katina has been able to work wonders realigning my bones, neck to legs in the past few years.  If your bones or muscles hurt, she’s absolutely wonderful.  Katina accepts some insurance with a referral.  301-770-1613.

I’ve seen at least five other physical therapists around the area in the past three years, in a quest to find one to relieve the pain AND take my insurance, but these are my absolute favorites and it’s not fair to keep them to myself any longer.  If you live outside the D.C. area, to find a lymphedema therapist, check out the National Lymphedema Network.  If you need help affording lymphedema sleeves, gloves, and/or gauntlets, try the Marilyn Westbrook Garment Fund.  If you think that insurance should cover these garments that cost $100-$1000 each that are necessary for breast cancer survivors and other edema suffers, please let your Congresspersons know that you support H.R. 4662, the Lymphedema Diagnosis and Treatment Cost Saving Act of 2010, introduced February 23 by Congressman Larry Kissell (NC-8) and now cosponsored by Congressman Ron Paul (TX-14).

The National Cancer Institute

February 24, 2010

quotes me today in support of a proposed protocol, where patients report their own symptoms and side effects such as chemotherapy induced peripheral neuropathy (CIPN).  Called patient reported outcomes (PROs), the professional thinking is that patients will be more able to accurately and completely describe what is happening to them.  I’d say that this entire blog is a testimony to that — I pledged to write every day of my treatment about my symptoms, my feelings, and what I was going through, and, years later, I still get emails nearly every week from patients and the newly diagnosed looking for information — honest information — about what to expect, what other people feel during this time, and how to cope.

It surprises me, but it’s true.

So today I have just one message for the professionals dedicating their time on the Symptom Management and Health-related Quality of Life Steering Committee, which meets just down the street from me in Rockville, MD:

THANK YOU for your work.  Thank you for your time.  Please consider engaging PROs and continuing to advance the science and practice of symptom management.  Please keep working not only toward a cure, but also for medicines and physical therapy and techniques that mitigate the side effects of the cure.

Nearly three years after my diagnosis, I’m still in physical therapy four days a week for pain management, scar tissue reduction, and lymphedema (side effects of my double mastectomy) and struggling with sleeplessness and other side effects of required medications tamoxifen and aromasin.

I’m incredibly grateful for this opportunity to live, an opportunity that women diagnosed with inflammatory breast cancer twenty years ago did not have. But treatment now must come with an opportunity to live beyond the walls of the rehab center, to travel, to explore, to hug my children without pain.  It must.  And one day, thanks to your efforts and the efforts of thousands of oncologists and tens of thousands of patients, it will.

I know it will.  I’m asking you to feel the urgency that I feel, though, and make advances NOW.

Because when the snow melts and the skies clear over Rockville, I want more than anything to be able to take my children to the park, to coach their soccer teams, and to hug them unreservedly, without worry that their gentle hugs will crush the nerve bundles tied up with scar tissue across my chest and shoulder, causing me to fall to the ground or push them back as I gasp in pain.

I want to hold them close.

(picture deleted)

Please, keep working so that I can hold my children close.

In memory

September 30, 2009
Dear friends, I received the following letter today from a blogfriend, C.E., who walked with me in the Komen Race for the Cure two years ago, during my chemotherapy treatment.  It meant so much to me that day, and the memory still makes me smile.  But her letter didn’t.  Please read it, and leave your comments for C.E. for the loss of her friend.
Dear Susan,
My friend Simcha Esther (Shari) Gershan just lost her battle with cancer last night at the end of Yom Kippur, the holiest day of our year.  She made a documentary about her life, and was planning on attending the film’s premiere on October 22. Unfortunately she will not be there (but of course, will in spirit).
Perhaps your readers who live in the NY area would be interested in attending this event and learning from this inspiring woman.
Your loyal reader

Farewell, Senator Kennedy.

August 26, 2009

Cancer sucks.