Cancer Rehab Closer to Reality

I am happy to share that Cancer Rehabilitation Programs are closer to becoming a reality. Dr. Michael Stubblefield, author of: Cancer Rehabilitation: Principles and Practice and Dr. Gail Gamble author of: An Overview of Current Need, Delivery Models, and Levels of Care have organized a Cancer Rehabilitation Research Fund at the Foundation for Physical Medicine and Rehabilitation. The goal is for Rehabilitation Physicians to take the lead in restoring function and quality of life to the Cancer Survivor population, and to develop efficacy data. The first research grant hopes to be offered in 2018. If Cancer Rehabilitation is important, you can show your support with a donation to the “Cancer Rehabilitation Research Fund”. For more information contact panderson@foundationforpmr.org the Foundation Executive Director Phyllis Anderson or click on this link (http://foundationforpmr.org/new-cancer-rehabilitation-research-fund/ )

Why Rehabilitation Physicians? In the last year, all of the major rehabilitation medical societies have featured cancer rehabilitation programs at their annual educational meetings. They have a broad medical expertise that allows them to treat disabling conditions, such as neuropathy and pain, throughout a person’s life, treating the whole person, not just the problem area.  .

Why is this so important? As part of more 15.5 million Americans cancer survivors we recognize the need for physicians who understand our physical, medical, and psychological needs, which can be difficult to find at a local level. This Research Fund will help educate more doctors and develop programs that allow local access to Cancer Survivors.

Who is Dr. Stubblefield? He is one of the pioneers in Cancer Rehabilitation. He wrote a paper in the Society of Oncology in 2011 giving Cancer Rehabilitation a definition and goal.

“Cancer rehabilitation is the subspecialty of rehabilitation medicine concerned with restoring and maintaining the highest possible level of function, independence, and quality of life to patients at all stages of their cancer diagnosis, including those undergoing potentially curative therapy and those receiving palliative care, as well as cancer survivors. Cancer rehabilitation physicians specialize in the evaluation and treatment of neuromuscular, musculoskeletal, and functional complications of cancer and cancer treatments such as acute and chronic pain, weakness, muscle spasm, myelopathy, radiculopathy, plexopathy, neuropathy, myopathy, deconditioning, contracture, spasticity, lymphedema, amputation, shoulder dysfunction, and gait disorders, among others. Late effects of radiation represents a particular challenge for cancer rehabilitation physicians as radiation fibrosis may affect multiple structures, including the spinal cord, nerve roots, plexus, local nerves, and muscles, as well as their supporting structures. A comprehensive clinical evaluation involving an in-depth working knowledge of neuromuscular and musculoskeletal anatomy and incorporating specialized physical examination maneuvers allows the physiatrist to clarify the specific etiology of pain and functional disorders. A safe and effective rehabilitation program will depend heavily on an accurate diagnosis of the cause of pain or dysfunction.” http://www.seminoncol.org/article/S0093-7754(11)00078-9/fulltext .

People have travel from around the world to see Dr. Stubblefield due to his expertise. One patient, Paul says “He was critical in learning to manage my issues.” Another person Dean says “I only spoke to him by phone, but my sense was that he “got” it. He was very kind to call me back and spend a good deal of time talking to me. I will likely see him at some point myself.” I also have seen Dr. Stubblefield who recognized my pain and limited range of motion as Radiation Fibrosis. Other physicians told me it was “all in my head”. Once the diagnosis was made I was able to move forward with the help of medical intervention and physical therapy under Dr. Stubblefield’s guidance.

Here are some you tube links to view about Cancer Rehabilitation done at Memorial Sloan Kettering.

1. https://www.youtube.com/watch?v=xumJojH94Ts&feature=youtube_gdata_player
2. https://www.youtube.com/watch?v=LvZJKNtNXXc&feature=youtube_gdata_player
3. https://www.youtube.com/watch?v=cp5PGCUYRdE&feature=youtube_gdata_player
4. https://www.youtube.com/watch?v=dczzQxAaLYQ&feature=youtube_gdata_player

Dr. Stubblefield sees patients at Kessler’s West Orange and Saddle Brook, New Jersey locations. To schedule an appointment, call 973-731-3900 Ext. 2258.

The AAPM&R founded the Foundation for Physical Medicine and Rehabilitation in 2002 as a 501(c)(3) nonprofit organization dedicated to advancing physiatry and physiatric research.

 

 

 

 

 

 

An Invitation

 

Hello,

I got your elegant invitation. My schedule will not be able to accommodate a road trip at this time. I understand you will visit unannounced sometime in the near future. Please know when that day arrives, I will welcome you. You have been considerate of my inability to travel with you over our long term relationship.

You watched over me, patiently waiting for me to notice your presence. I didn’t see you sitting next to me at the bar on Friday nights after work.  I thought the pain in my lower back was from the bar stools so gentle was your approach. My fatigue was overwhelming as I pushed the grocery cart. “What working mother is not tired?”, I asked myself. My gaze averted instead of looking you in the eye with your blood stained apron as I passed the meat counter. The weight loss you provided was a welcome change. I was not often hungry. As my cough became a constant companion I could no longer ignore you.

Do you remember the exact date we met?  Saturday morning, February 25, 1995, I was 40 years old. It a brisk cold day. The cloudless sky mirrored down to the snow producing a glare that required sunglasses when driving. My husband wasn’t home. I don’t remember where. My daughters were getting ready for me to drive them to their play dates. You called first. I answered the phone on the wall with the long curling cord. They didn’t even have cell phones then. You insisted on meeting in person. The magnitude of the encounter began to weigh upon me, still naive of your true nature.

You didn’t introduce yourself, but hid behind the young handsome doctor, letting him agonize with each word that needed to be exchanged. Sitting across from you in the padded metal chair, I recognized your serious, hushed low tone. You exposed our encounters when you strove to make me notice you, my symptoms. Your words fell like the large blocks of granite chunks crashing in the quarry, leaving my thoughts in the dust cloud to settle down in some sense of logic. A terror rose to devour me. I began to grasp how powerful you are.

I had so much to teach my fledgling daughters, Alison and Lisa, still young and just two years apart in age. There were the mundane things like sorting laundry, cooking their great grandmother’s pasta recipe, and how to braid their hair. They would be motherless children with hearts that would always weep should I go with you. They would need me to help them understand their world. I could only allow a distraction, I insisted. In your kindness, you let me believe I was in control. I agreed to your concession that you a become part of our daily life, a member of the family.

You spent many hours with Phil. He still won’t tell me about your conversations. The girls bewildered why you had become such a large presence in our lives. Did you feel unwelcomed?  I reflect on our weekly drives to New York City from March to September. Silently sitting by my side, as they found the vein, we exchanged glances. During the daily appointments until January did you began to understand how it felt to be part of a loving family? Was it our kindness that convinced you to leave me behind while taking others with you or just the luck of the draw? In all fairness though, I did demonstrate my commitment to you with my nausea and baldness. My veins will never be the same!

I still take your calls late at night to discuss how no one dies from just pain. We meet for coffee. I pay the check with secondary cancer and my heart function. You allow me to walk away. I thank you for that kindness.  I no longer avoid your gaze as you loiter with an iPad in your hand, taking notes in the Emergency Room from behind the curtain. I can tell by Phil’s demeanor you and he had a chat.

Alison and Lisa, no longer need me. The life lessons passed from mother to daughter have been incorporated. I have a grandson who I delight with silly songs and belly kisses. I have learned the Four Noble Truths of my Buddhist faith. My husband continues to be my best friend. You can see why I would like just a bit more time before we hit the road? I know I am being selfish.  Can you wait just a little longer if I agree to always meet you on your terms? I promise to pick up the tab.

Sincerely,

Teresa

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A Review of a New Type of Garment

Originally posted on The Lymphie Life: Disclosure: I received one free Jobst Relax to review on The Lymphie Life. Although this post is sponsored, all opinions expressed here are my own honest impressions of the product! When I first saw the Relax last autumn before it’s official launch, I thought it was totally different than anything I had seen…

via Product Review: Getting Relaxed with the Jobst Relax — My Lymph Node Transplant

Going Home

It was still dark when my alarm went off. I have the ringer set to the most gentle of sounds. They say how you wake sets the mood for the day. I laid there in my old bedroom gathering my thoughts. My room hadn’t changed much since I left for college. All my posters were still on the wall. The piggy bank, signed by all my friends in 9^th grade, at my 16^th birthday party still empty stood next to the lamp on the bedside table. Even the curtains were the same, just more faded and worn looking. There was additional clutter of my mothers beading hobby, but she promised she would move them out. That was weeks ago. As my thoughts moved from the present to past, I felt the resentment build from having to be here. College was done. All of my friends scattered back to where they came from or moved on to new places. Facebook keep us in touch. It just wasn’t the same as sitting around after smoking a joint, solving all the worlds problems. My parents thought they had all the answers, therefore, it was useless to engage them in those types of discussion. Not to mention they would never smoke a joint.

I convinced myself that  coming home didn’t make me have take the child’s role, although that seemed the most natural. I promised myself I wouldn’t do it. I was about to begin my life. My own life, I would not be home for long. The Bank of BMK had hired me, just a few months of saving my money and I would be out on my own. I threw the flowered coverlet to the side.

“Time to get up” my mother shouted from the bottom of the stairs, like always.

“I’m up ma”

“I don’t hear you”

“Okay ma, don’t worry”

Not falling into that child role is going to be harder than I thought! Moving home and find a job are two of the top stressor in life I have been told. It was not that I didn’t love my parents, they are wonderful, caring, but like most parents of my generation they Hovered.

I put my feet on the floor, wrapped my fuzzy blue robe close, pulling it tight around my waist. Making as much noise as possible to alarm my mother. She always relied on sounds to be aware of my location.  Craving that first cup of coffee I went downstairs. 

“Good morning, you have a big day.” “Excited?” Mom cheerful inquired.

“Yes”  I muttered with a mumble.Until my first cup of coffee I was not a big conversationalist. My mind had too many thoughts’ about the coulda and shoulda that lay ahead for the day. Minor ones like how I should wear my hair or could I possibly miss my train on the first day? To major ones, what will I do when my health insurance runs out?

My father came in from having his smoke and gave me a sympathetic wink. 

“Your mother give you any advice yet?”

“No” she replied. ” I just made sure she got up on time”

“She has been setting an alarm and getting up all by herself since 9th grade” he chuckled. 

My mother just smiled and gave him a kiss on the cheek. ” some habits are hard to break” 

I was grateful that mother didn’t make breakfast. That would made it hard not to feel like a child. The smell of her French toast was enough to bring me back to the years of braids and playgrounds. I wanted to start my first day on the job as an adult, forgetting I lived home with my parents.

I took my coffee upstairs to get dressed. My wardrobe was consisted of, old sweats, night out low cut dresses, and my two new suits. They were mix and match suits from the local department store at the mall. They gave me two jackets, one pair of pants, and one skirt. Depending on the blouse I wore I could get 5 days of wear. 

I stood in front of the closet holding up each item to my body while it was still on the hanger. First impressions were so important the outfit had to be perfect. A glance at my watch and the realization I had no time to waste. I could not miss the train. I decided the blue jacket and pants with a white blouse would have to do. 

I needed some pump me up music, so I grabbed my iPod picked my workout playlist and started to get ready. 

“Turn that down” again from the bottom of the stairs. Even though I could not really understand what she said above the sound of Mick Jagger’s voice. There was no doubt in my mind. I didn’t need to hear the words, they had been shouted for so many years from the bottom of the stairs that I could hear it in my sleep. My mother didn’t like loud music. My father was losing his hearing and never thought my loud volume setting was a bad thing. 

I was almost ready so it was easier just to turn it off. I reminded myself that now given my new living situation I needed headphones. Put that on the list of things to do when I get my first paycheck!

When I come down stairs all pristine and looking like a commercial for some corporate entity, I feel very grown up.

I held the ticket in my hand, dressed in my new blue suit. On my feet were comfortable sneakers. The pinching heels were in the large leather bag stuffed on the bottom. I didn’t stand out in any way from the other commuters waiting for the morning train. All standing on the wide concrete platform, moving from one foot to the other. No one caring to make conversation or even eye contact. I could not stop staring at a middle age woman standing next to me, her hair still wet from her morning shower. The dampness rising from the heat of her head turning to white fog dissipating to nothingness. Occasionally someone would walk to the warning yellow line bend to the right looking down the tracks as if that would make the train arrive sooner. Others checked their phones while they waited. 

This was my first commute to my new job. The days of getting up, going to class, after a few hours of sleep were behind me. College parties replaced with college loans. I had joined the grown-up world. Well, not quite, I still lived with my parents, hoping this job would pay enough for me to get an apartment in NYC. 

Everyone took a step forward as the ground began to shake, announcing the arrival of the 6:54. It slid past with the sound of metal against metal, a gust of air bring with it the smell of diesel fuel. The train stopped, the doors opened. I stepped inside. 

Quality of Life and Other Concerns in Long-Term Survivorship

Quality of life may be considerably difficult during active cancer treatment. Side effects can be acute and short-lived, and the majority of disease-free cancer survivors report good quality of life 1 year post treatment in this study by Cancer Journal for Clinicians: Issue online: 8 July 2016.  Long-term or late side effects vary, depending on many factors such as cancer type, treatment, age, and comorbidity

The emotional well being for survivors more than 5 years is usually comparable to that of someone with no history of cancer. However a significant number report lower overall physical well-being than their peers. Fear of recurrence and subsequent primary cancers is common and affects the Quality-of-life issues. It is also difficult for the cancer caregivers. Who provide emotional and physical support to survivors. They frequently report having unmet psychosocial and medical needs.

Here are some resources that can assist the various phases of cancer survivorship.

•  American College of Surgeons’ CoC has issued standards for quality, patient-centered cancer care that include recommendations for patient navigation, palliative care, distress management, and survivorship care planning.
• The Alliance for Quality Psychosocial Cancer Care, a coalition of professional and advocacy organizations, including the American Cancer Society, formed to advance these recommendations and issued a comprehensive resource guide, which is available to assist CoC-accredited facilities in meeting the new standards.
• American Cancer Society has begun to produce guidelines to assist primary care and other survivorship physicians in the provision of care for people with a history of cancer. The ACS guidelines focus on comprehensive survivorship care, including ongoing surveillance and cancer screening, support for health behavior changes, and the assessment and management of the long-term and late effects of cancer and its treatment.

This article can be read in full: Care of the Whole Patient—During and After Treatment | Cancer Support Community