September 2018

 


 

 

Name Of Column Author Title Article Type
The Scuttlebutt Tom Whitworth Is This Normal? Commentary
Speaking Out Members Tell Us About Your Caretaker? Opinion
VoicePoints Erin Guidera, MS, CCC-SLP Preventing Radiation Fibrosis Education-Med
Dear Lary Noirin Sheahan Following Ed Roberts’s Star Commentary
Between Friends Donna McGary Two Legs & One Lung - A Story of Succes Commentary
Stand By Me Diane Davis My Understanding Caregiver Caregiver Experiences

 

 

INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp

COMMENT HERE
FEEDBACK

 

 

Is This normal?


Often, we have patients and survivors write in, describing symptoms of depression. Sometimes, caregivers do this, too. Inevitably, the question early on is “Is this normal?”. Writers seem surprised to hear from among us that depression is not at all unusual among people dealing with cancers of the head and neck and treatments for the same. It is actually quite common.

 

Depression does not always lead to suicide but one source says that in over half of cancer patients ending their own lives, depression is present. Another indicates that cancer patients are twice as likely to commit suicide as people in the general population. The types and locations of cancers present different levels of likelihood of depression and/or suicide. One study put head and neck cancer second on the list, with pancreatic cancer being connected to a higher incidence of both.

 

Many instances of cancer bring on issues beyond the obvious. Often, there are financial, relational, and marital issues, as well. Head and neck patients and survivors are susceptible to those and more. We commonly struggle with loss of our laryngeal voice and with visible anatomical changes. This is especially true among current patients and newer survivors. Caregivers are not immune; they often suffer watching their loved one travel the road we do. In many cases, they are driving and we are the passenger.

 

People suffering from depression for whatever reason need help. Sufferers feel embarrassed to talk about such things or to let others know they are struggling. That is not only okay but typical. Below are sources for help. If you even suspect that you or someone close is suffering from depression, logon or call in. Help is there. I tested it for purposes of this article. Primary sources of help in the United States are noted below. Sources of help are also available outside the USA.

 

National Suicide Prevention Hotline and website:

1-800-273-8255

https://suicidepreventionlifeline.org

 

For Military Veterans in the U.S.

1-800-273-8255, press 1

For online chat and more information:
https://www.veteranscrisisline.net/

 

September is suicide prevention month, with the 10th being Suicide Prevention Day. I can’t help but ask - shouldn’t every day be?

 

The links below provide more information on this topic, not the least of which is that compiled by our library chair, Ron Matoon.

http://www.webwhispers.org/library/Depression.asp

https://www.mdanderson.org/newsroom/2015/12/depressed-head-and-neck-cancer-patients-three-and-one-half-times.html

https://academic.oup.com/jnci/article/100/24/1750/2607270

Sharan Prakash Sharma; High Suicide Rate Among Cancer Patients Fuels Prevention Discussions, JNCI: Journal of the National Cancer Institute, Volume 100, Issue 24, 17 December 2008, Pages 1750–1752, https://doi.org/10.1093/jnci/djn457

 

 

Enjoy, laugh, and learn,Tom Whitworth
WebWhispers President

 

 

 

"Did You Have a Caregiver – How Important Was Their Support?"


 

We are from Ontario, Canada and regarding the question of having a caregiver, I guess it was me, but I must add that we had a wonderful nurse who came in every day for about a month, then 3 times a week after that. My husband had his operation January 3rd and was home on the 10th; he had a feeding tube in and to be honest he couldn't wait for it to be removed which was about a month later. He is able to eat normally but has to go and have a dilation approimately. every 2 months, which helps a lot.

For me as a caregiver, it was important to have the nurses come in and dress his arm, where the flap was taken from to put into his throat. My husband has said he could not have done it without me or the nurses with such a positive attitude, so it is important to have a caregiver as this operation is major and a patient can have serious depression. We also had a dietician come to the house and a speech therapist. My husband had a TEP inserted but it kept leaking. Where he had had previous radiation (11 years ago) the skin was sensitive and he couldn't use the baseplate as the adhesive is too strong, so he is back to using an electrolarynx and it works just fine.

One thing to note is that after the feeding tube was removed, my husband had dizzy spells due to dehydration Once he started drinking more, his blood pressure returned to normal and he was able to continue with his healing.

He is now back to cutting the grass etc, and everyone says how well he looks.

Just to mention WebWhispers has helped us a lot reading of other people in the same situation.

Helen Thompson - Ontario, Canada
Jan, 2018

 



I was very lucky as my caregiver was a registered nurse. I was very stubborn, as I knew I needed to be able to do all my care myself, however she was always there when I needed her. When I had my partial laryngectomy, I had a Trach in for about 5 months. I could not lay down or turn my head so my wife made me a special pillow that helped me keep my head in one place while I slept in a chair. I also had to suction the Trach every 30 minutes, day and night for those 5 months so sleep was only a little at a time. She would sleep on the couch so she would be near if I needed her. She was my angel.

When I had to have the total laryngectomy she ended up in the hospital too, about a week after my surgery. My sons came to be with me but it was good that I knew what I had to do.

Later I was very thankful that I could be there for her when she was diagnosed with lung cancer. She was on chemo for 2 years until the chemo was doing more harm than good and had to be stopped. She had a very hard time the last few months so it was my turn to help her and I would do anything I could to make it better for her. We were together for over 45 years which was a blessing.

I do not know how someone would make it without a caregiver. I know they do, but I know we were there for each other when we needed it, and could not imaging it any other way. I am a five-time cancer survivor and I am alone now for the first time in my life and it is difficult. Memories of my angel help me every day.

Ron Mattoon – Seattle, WA
2010


 


 

Yes, my caregiver was my husband. I would not have gotten through my recovery without him. I had to have thirty-five under-anesthesia surgeries. Including 2 free flap, one from my arm that didn’t work and one from my pictorial muscle that did work. My problem was a fairly large fistula that didn’t seem to want to heal. I also needed several skin grafts. My husband (caregiver) was with me through all surgeries and tests to see if the free flaps worked.

My feedings were with a stomach tube that lasted a year. I complained because I couldn’t eat anything for over a year. One month after I was allowed to eat, I found out I had gangrene of the gallbladder. I had never had gallbladder problems before and I decided I was done. No more surgery.

Again my caregiver stepped up and told me I could do this one more time, which saved my life. The doctors had told me if I didn’t have this surgery, I would have twenty-four hours to live. This all took place from August 13, 1999 to July 2001. The recovery to get to where I could have the tube feeding removed, learn to eat regularly without choking etc. took till 2002.

The sad thing about all this is in August 2003, my husband came home from work early one day (which he never did) and said he couldn’t work because of pain. I immediately took him to the ER because it was not like my husband at all. We found out that he had 5 tumors the size of lemons and although we did try one bout of chemo which made his pain worse, there wasn’t anything we could do. My husband and wonderful caregiver died December 2003.

Karol Beaufore – Alpena, MI
1999

 



I had my laryngectomy in October, 2016. After twelve days in the hospital, I went home. My husband took two weeks off from his work to help me adjust to all the changes. He helped with tube feedings, medication, and doctor and dentist appointments. Then he changed one of his days off to Wednesdays when he went back to work so I could continue to make appointments for needed care. My husband was always there to support me through the chemotherapy and radiation therapy. He is still always here to back me up and help with things that frustrate me.

I am so lucky!

 

Loraine Demars– Arlington, WA


 


 

I am Kevin Ahern and my surgery was 9/2007. My wife was my caregiver and I would have been lost without her.

Kevin Ahern – Elizabethtown, PA
9/2007

 


 

Like most married Larys my wife was my caregiver. During my surgery my daughter, who is a nurse, was my wife's caregiver until she saw me wake up.


Bob Bauer - Hayward, CA
Class '08

 


 

My total laryngectomy was August 2015. I'm a widowed man, aged 75 at the time of my surgery. I still live alone and have managed all of my care from the beginning and continue to do so.


Dick Spiers – Mashpee, MA
Class of 2015



 

I could not (and still could not) go through this without my caregiver, whom is my beloved wife. I would have checked out years ago without her. I am so lucky and blessed to have her love and support during this last part of my life. I have been sick since 2014 and a lary since 2015.

Mark Bunny – Indianapolis, IN
2015



 

My wife was instrumental in getting me through the first few weeks after surgery. I had to return to the hospital with a fistula and stayed for a week on a floor that was not familiar with laryngectomees; my wife saved the day on several occasions. She was also instrumental in managing all the new supplies associated with tube feeding for a few weeks. Don't know what I would have done without her help.

Doing fine now 18 yrs post op/radiation.

Richard Sipp – Midland, MI

 


 

My daughter Angela Wolf and her daughter Katherine moved in with me after her husband passed away from cancer of the esophagus. She had been taking school in Anacortes, WA, and was studying for her master’s degree in clinical psychology. She’s a licensed psychologist with an office in Edmonds, WA.

I had lost my eyesight, and my late wife was in the middle stages of Alzheimer’s. I needed help to take care of her as well as myself. My wife passed away March 29, 2008.

 

In late 2013 I stared losing weight, and was eating a lot, so it was a mystery. After I developed a sore throat, my doctor sent me to the x-ray lab where they had missed the cancer. By early 2014 I had gone from 165
Pounds to about 130. My doctor sent me to Dr. Chu at the Polly Clinic in Seattle. It didn’t take him more than five minutes to tell me that I had a huge mass. I was immediately scheduled for the normal six weeks of Chemotherapy and the 35 days of radiation.

On January 27, 2015 I was told that I was cancer Free, and the staff at the Swedish Radiation building rang the bell, and along with other patients congratulated me. However, my oncologist wasn’t so sure, and he was right. The cancer was still there. I then had a tracheotomy. When I came home from the hospital Angela had contacted various medical supply companies, and my bedroom was full of so much stuff. A feeding tube machine several cases of canned food, a nebulizer, suction pump with a sack full of tubes. bandages, about 25 feet of hose for the nebulizer, and a sack of stainless steel cannulas. Keeping those clean was difficult for me, but Angela kept them sterilized for me. I had a feeding tube in my stomach, I was down to 99 pounds, and was so weak I couldn’t even open the cans to pour in to the machine. Angela kept feeding me with that machine with six cans a day.

In November of 2015 the cancer had returned, and on November 30/2015 I became a Larry, and the feeding tube was placed in my throat. At this point Angela showed me how to use a syringe to put the canned food and Boost in the feeding tube.

For reasons that I still don't know my doctor had placed me in Hospice, and one day a lady showed up at my hone with a truckload of of stuff including morphine, packages of things for men that have trouble with body fluid, etc. I woman introduced herself, and after a brief discussion told me that I should quit drinking Boost because if I gained weight it would make it difficult for me to breathe. Of course this made absolutely no sense to me. When Angela came home a social worker called, and Angela was completely shocked at what little the woman knew what she was talking about. Angela immediately canceled Hospice. I still have a bunch of morphine and men's supplies, and someday I might need then.

As I became a little stronger and gaining a little weight, Angela started pushing me to start helping myself. Although I can’t seem to get over 120 pounds I can do almost everything for myself now except drive. Even that’s not a problem now as I have several friends that are more than willing to take me places I want or need to go. My primary physician’s facility sends an Uber car to pick me up and bring me back home

I only live about 8 minutes away from the Swedish Hospital, so Angela drove me there every day. She took me to some medical facility 172 times in a little over a year.

Johnnie Dontos - Woodway, WA
11/30/2015

 


 

My wife was my caregiver, and I doubt I would have made it without her. She took charge from day one, by being with me for every doctor and lab appointment. She kept meticulous notes and remembered to ask the questions we all have. She questioned the doctors when things didn’t sound right.

After my neck dissection, she dressed the wounds and made sure I was up and walking to stay strong. She took care of me when I needed the care, and left me alone when I needed to be left alone. Three years later, when the cancer came back and I became a Lary, she did the same things as the first go round and let my frustration roll off her back. She once made an intern cry. (Long and almost funny story) I know I could go on for hours and pages of all of the things she did for me, but I think you get the gist. This was a rough time is both of our lives, but she sure made it (almost) easy.

Michael Cohn – Wheeling, Il
2007/2010

 





 

Next Month's Question:
How helpful and knowledgeable was your speech therapist?

 


 


 

Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month. 

Staff of Speaking Out

 

 

 

 


Preventing Radiation Fibrosis


Patients who have undergone radiation to the head/neck are very familiar with the early effect of radiation, which develop during the treatment process. A few of those side effects include xerostomia (chronic dry mouth), dysgeusia (changes in taste), and mucositis (painful sores in the mouth/throat) among other side effects. Unfortunately, many patients are not adequately educated on long-term, or late effects, of radiation. Radiation has cynically been referred to as “the gift that keeps on giving” because side effects can develop years after the treatment has ended. In fact, research supports that late effects of radiation can develop 10-15 years after treatment. Radiation can cause tissues to become fibrotic, or stiff. Radiation can also affect bone (e.g., jaw bone, hyoid bone) in a condition called osteoradionecrosis, which results in bone death from poor blood supply to the bone. Similarly, dental issues are common after radiation. Additionally, radiation can affect nerves, resulting in poor sensation (e.g., silent aspiration in the non-laryngectomized patient).

 

Effect on Neck ROM

Radiation to the neck can cause significant tightness to muscles of the neck and shoulders including the scalenes, trapezius, and sternocleidomastoid muscles. This can limit range of motion of the neck and shoulders. To minimize the risk of neck tightness, patients undergoing radiation should maintain flexibility of the neck muscles by simple stretching exercises including chin curls, head rotations, shoulder shrugs, and shoulder circles. After radiation fibrosis has developed. individuals may benefits from myofascial release (MFR) if medically appropriate. MFR is a hands-on method of massaging and stretching the connective tissue of the head/neck to increase range of motion, increase flexibility, decrease pain, and improve posture. MFR is typically performed by a trained speech pathologist or physical therapist.

 

Neck Exercises


Shoulder Exercises

 

 

Effect on Jaw Opening
Trismus (limited opening of the jaw) is also common following radiation, particularly radiation targeting the base of tongue, tonsil, retromolar trigone, soft palate, masseter muscles, pterygoid muscles, and the temporomandibular joint. Trismus can adversely affect chewing, nutrition, oral care, speech production, and intubation for future surgery. If a patient is considered high risk for developing trismus, they may be prophylactically initiated on trismus prevention exercises to be performed during radiation. Gentle jaw stretches, such as opening the mouth wide like a big yawn and holding 10-15 seconds, is often the first exercise. If a more aggressive intervention is needed, a speech pathologist may recommend tongue blade therapy or a device (e.g., TheraBite, OraStretch, Dynasplint).

 

Effect on Swallowing
Radiation can affect connective tissues, which can cause muscles to become fibrotic, lose elasticity, or narrow. As a result, dysphagia (difficulty swallowing) is common after radiation. The contractibility of muscles is often compromised, which limits how well the food/liquids can be propelled through the pharynx (throat). Strictures (areas of narrowing) are also common in the esophagus. Because of the stiffening affect that radiation can have on muscles, it is very important to continue to use the swallowing system during radiation. If it is safe to swallow, patients are recommended to continue to eat/drink throughout treatment to limit the stiffening effect. A speech pathologist often also recommends swallowing exercises to targeting muscles prone to scar tissue. Common exercises recommended during and after radiation include the effortful swallow, Mendelsohn Maneuver, and the Shaker exercise.

 

Gentle Jaw Stretch

Stomal stenosis
If you have undergone a total laryngectomy, it is paramount to keep the stoma patent and protected. Radiation to the stoma or surrounding neck can cause stomal stenosis (narrowing of the stoma). If a patient is considered to be at high risk of stomal stenosis, is may be recommended that they use a stoma stent (e.g., LaryTube/LaryButton, Fahl Tube, Singer Tube) during radiation to maintain patency of the stoma. Some individuals must continue to wear a stoma stent long after radiation to prevent late onset of stomal stenosis.

Shaker Exercise

 

Lary Tube

 

If you have any questions on the treatment, exercises, or devices mentioned in this article, please contact your speech pathologist for further information or the author at erin.guidera@moffitt.org.

 

Erin Guidera, MS, CCC-SLP is the lead head/neck speech-language pathologist at Moffitt Cancer Center in Tampa, Florida specializing in the evaluation and treatment of patients with head and neck cancer including alaryngeal voice restoration following total laryngectomy and dysphagia management following head/neck cancer.

H. Lee Moffitt Cancer Center & Research Institute
12902 Magnolia Drive
Tampa, Florida 33612
Office: (813)745-3609

 

References

 

Dynasplint: http://www.dynasplint.com/divisions/jaw/

OraStretch: http://www.craniorehab.com/orastretch-press-jaw-motion-rehab.html

TheraBite: https://www.atosmedical.com/product/therabite-jaw-motion-rehabilitation-system/

American Cancer Society: https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/radiation/coping.html

Oral Cancer Foundation: https://oralcancerfoundation.org/complications/trismus/


Articles
Christianen, M. et al. (2015). Patterns of long-term swallowing dysfunction after definitive radiotherapy or chemoradiation. Radiotherapy and Oncology, Volume 17, Issue 1, 139-144.


Hutchesen, K. et al. (2012). Late dysphagia after radiotherapy-based treatment of head and neck cancer. Cancer, 118(23), 5793-5799.


Kamstra, J. et al. (2013). TheraBite exercises to treat trismus secondary to head and neck cancer. Supportive Care in Cancer, 21(4), 951-957. 31(3), 339-351.


King, S. et al. (2016). Pathophysiology of radiation induced dysphagia in head and neck cancer. Dysphagia, 31(3).


Servagi-Vernat, S. et al. (2015). Dysphagia after radiotherapy: State of the art and prevention. European Annals of Otorhinolaryngology, Head and Neck Diseases, Volume 132, Issue 1, 25-29.


Tolentino, S. et al. (2011). Oral adverse effects of head and neck radiotherapy: literature review and suggestion of a clinical oral care guideline for irradiated patient. Journal of Applied Oral Science, 19(5), 448-454.

 

Images

http://bit.ly/2CbG2yS

http://bit.ly/2op4W43

 

Original content written by the Rehabilitation Services, Physical and Occupational Therapy Department. Graphic images created by Susan Gilbert, CMI and Angela Forero. Produced by the Patient Education Department. Reviewed by Patient & Family Advisors.


H. Lee Moffitt Cancer Center & Research Institute, an NCI Comprehensive Cancer Center – Tampa, FL.
1-888 MOFFITT. H. Lee Moffitt Cancer Center & Research Institute, Inc. All rights reserved © 2003. Revised 2008, 2010, 2014, 2016.

 


 
 

 

 

 

 

 

 

Following Ed Roberts’s Star

 

Not everyone will have heard of Ed Roberts but we larys and all who experience physical limitations owe him a debt of gratitude. Born in California in 1939, Ed contracted polio as a teenager. The disease left him paralysed from the neck down except for two fingers on his left hand and some of his toes. In those days the disabled were shunned and marginalised. We can probably all remember our teenage self-consciousness and imagine how he must have felt when his mother insisted that he return to school despite his disability.

 

Ed later thanked his mother for pushing him forward socially. Attending school forced him to face his fears. He realised what courage it needed for him to believe that he was someone to be valued when society told him that he could only be pitied. Luckily for us, Ed had the insight to see that his courage, rather than his disability, was what society really needed to recognise and value. Instead of living out the role of ‘helpless cripple’ that everyone (except his mother) expected of him, he decided he would live the role of a star.

Although Ed has done the really hard work for us by publically challenging the social stigma around disability, I think we all have to continue his work within ourselves and within our own social microcosm. Social attitudes are never fixed, they chop and change depending on the political climate or which stories are impacting on the news, or whether people have faced their own fears of physical illness and disability.

And so all of us, from time to time, experience something of what Ed Roberts had to face when he went back to school with his wheelchair and his iron lung. Children will stare at us, some grown-ups too. Or we might see them flinch or avert their eyes. As an EL user, I’ve often heard a room go suddenly silent when my strange, robotic voice is heard.

What to do? Basically we have to plough onwards with our own agenda. Ask for what we need, not worry too much about others’ reactions.

As Ed discovered though, this takes courage. When we see children stare, when someone flinches or averts their eyes, when a room goes suddenly silent, it’s tempting to retreat into our shell. To keep our heads down, avoid the curious eyes, minimize our social activities, become isolated.

Our level of courage varies too. On a good day we might be able to breeze through any amount of social interaction, smile at a hundred staring children. On a bad day we want to curl up in bed and forget the world.

We’ve probably all found ways to help us through the bad days. My own tonic is mindfulness meditation. If I can give myself some quiet time, let my attention sink inwards to acknowledge the rotten way I feel, things start brightening up. Sooner or later I find that the brightness is already there. It’s me who’s rejecting it, holding onto my bad humour for dear life, telling myself that things shouldn’t be like this, life should be easier, people should be more sensitive, more appreciative, less demanding, less impatient…

All these demands I make on life! Meanwhile, my body breathes. The traitor! How can it be so accepting? It should refuse this miserable, unworthy, horrible life! My mind rants and raves but the body’s relentless thirst for air always gets the last word. Indignation capitulates. Exasperated shoulders are persuaded to relax. Defeated, I am forced to forgive life for its imperfections, forgive myself my foolish demands that things be anything other than exactly as they are.

Sadness might follow, as I acknowledge my own limitations, and those of the people around me. In time though, chinks of light break through. The world, I have to admit, isn’t all bad. It gives me air to breathe, food to eat, a body to live in. Sooner or later I find myself ready and even eager to meet the world again, to make the best of things, to let Ed Roberts star shine through me.

And so I find the courage to engage, to live as happily as I can, to let my strange speech bring forth stares or silences or straightforward kindness – whatever is evoked as I and others learn that our human limitations do not have to define us. When my courage fails I know I just need to let my internal tyrant rant and rave in the light of mindfulness. When the storm passes, my inner star shines brightly once again.

 

 

 

 

 

 

WebWhispers received this from caregiver Diane Davis back in April 2008 which was published under our mailbox header WotW Editor. It seemed a perfect time to re-print it given all the great responses to our Speaking out question this month. ~ Donna~

 

My Understanding Caregiver

Diane Davis


In our last two local club meetings, it was suggested that each caregiver write an article for the newsletter that would give us laryngectomees the caregiver point of view. Of course my husband volunteered happily ... until it came time to actually WRITE the darn thing. So I decided I would give one laryngectomee’s perspective on HER caregiver instead.

 

I have the best caregiver anyone could ever pray for. He tries and succeeds most of the time. Okay, so he’s not perfect, but he understands how to deal with me. Is he sensitive? Are you kidding? Like what sensitive person continuously waits until both my hands are full and then asks a question ... oh, heck, several questions in succession to a TEP speaker ???? And then there’s the “Let’s discuss this over dinner.” When he knows a lary can’t eat and speak clearly at the same time. And what about asking a question from another room or making a statement for my response as he’s walking OUT of the room! I’ve come to believe that, translated, those things simply mean he wants me to shut up and listen and/or he just does not want the answer!

 

But, truthfully, old habits die hard and he really does not do those things on purpose...right, dear? My favorite is his excuse for not WANTING to hear. He says, “Sorry, I didn’t understand a word you said." as he turns his back...or “I can’t hear you!” as he walks away.

 

This is the reverse psychology of the lary who admitted that when he heard those awful words “We’ve got to talk” , simply said, “Sorry, dear, I lost my EL somewhere.” I wonder what he says now that he is a TEP speaker. " Sorry, dear, my prosthesis is plugged up!"

 

In any case, my husband, Joel, has been fighting with me, side by side, with my multiple cancer demons for 10 years. What I need most, and this includes things I didn’t know I needed, he gives me...

 

— A shoulder to cry on and a friend with whom to vent
— A voice when I have none but helps me keep trying
— A creative mind which keeps inventing goals to keep us both motivated to move forward
— A wonderful support person but not a crutch
— A strong business partner who takes on more when I cannot
— A loving partner who never stops showing me how much he loves me
— An honest answer to my “do I at least look passable?” questions
— A believer in me and what I can still accomplish
— A non-complainer when I spend too much time supporting other people instead of him or myself
— An invaluable supporter of my medical needs
— A fabulous best friend
— An entertaining humorist
— A great travel companion who shares the good things of life
— A good masseur and a somewhat effective sleeping pill
— A great chauffeur

Now if I could only get him to listen...oops...looks to me I have actually accomplished much of that after all these years.

Diane


 

 

 

For the last 5 years I have participated in an extraordinary event here in Maine called the Eastern Maine Medical Center Champion the Cure Challenge. It is always held the 3rd Saturday in August and has become a family tradition. This event attracts thousands of participants, hundreds of teams, both large and small, all to raise money for cancer support and research. My nephew, who was treated for lymphoma at EMMC back in 2012 has spearheaded our participation with Team ROC - Run Over Cancer and we are always one of the top ten fundraisers. Folks participate in many ways: Run, Walk, Ride, Bike, now even Kayak. I do a steady 5K plod while other family members do everything from a 100 mile bike ride to my 2 grand-daughters running the 5K. The camaraderie you feel with thousands of strangers, who come in all sizes, shapes, ages and conditions, can not be understated as you are all there in common cause to help fight cancer and support cancer warriors.

 

I hesitated to write again about why it continues to be such a powerful experience for me, my family and the many new folks we meet because of cancer's tentacles when I came across the following article in our archives. It first appeared here under an old column called "Tidbits of Interest" back in June 2008. It is a perfect description of the sense of accomplishment and support we all get by participating. I keep hoping to speed up my plod and we were virtually rained out this year - it rained so hard I could have used a shower guard...I kid you not and we were all joking about the sloshing noises our sneakers made, but we powered/slogged/sloshed on!! Regardless of weather or fitness level, I encourage you all to give it a try. I am so impressed by Dave Greiwe....you go!!

 

 

Two Legs and One Lung - A Story of Success

 

To all Webwhispers: On May 15, I will be celebrating 10 years of life since my total laryngectomy in 1998. Just last week, on May 6, I celebrated an even more remarkable milestone .. 9 years since my right lung was removed, in a desperate effort to stop the 'terminal' spread of cancer. There has been much to be thankful for since then, but for now, I would like to share one story in particular.

 

Immediately following my pneumonectomy, I underwent 12 weeks of doctor-ordered pulmonary rehab at the local hospital. These sessions helped me so much that I took advantage of a voluntary, continuing program that meets 2 times per week. I've found this program (mostly aerobic exercise with weight training) to be an absolute godsend and, over time, have managed to increase my treadmill exercise to one full hour at 3.5 mph, at maximum (15%) incline.

Our daughter Susan (who was just graduating high school ten years ago) is an RN living in Indianapolis, and for my 58th birthday last August, she signed both of us up for the Indy 500 Mini-Marathon, scheduled for May 3, 2008. As I soon learned, the 'Mini' is the largest half-marathon in the United States and is, overall, the eighth largest running event in America. I was comfortable walking 3.5 miles, but 13.1 miles? And, could I function in the sold-out, full capacity, field of 35,000 runners and walkers? This was to be Sue's third year in a row of walking in the event, but the previous two years had been with friends her own age, all of whom had two lungs and strong voices that could be heard in a crowd of 35,000 other voices. I warned Sue that I might not be able to do this, but she seemed to have more confidence in me than I did, and assured me that there were lots of emergency vehicles on stand-by, just in case.

It was not without apprehension (and moments of stark fear) that Sue and I lined up near the rear of the pack, in the chilly, pre-dawn gloom of 'race day'. Participants were staged into 26 different 'corrals', A through Z, and aligned across all 4 lanes of blocked-off Washington street, in the heart of downtown. Luckily for me, we were in corral Z, so I could see only the backs of a few hundred people in front of us, and another few hundred smiling (and noisy) faces behind us. It was not until later, when the local TV station posted photos, that I could see the starting line, and the sea of humanity that was 35,000 strong. As one who avoids crowds, I was happy that I didn't see this photo before the race!

From the starting gun at 7:30 AM, it took us just over a half hour to inch our way to the starting line, which meant that the top runners were already half finished before we even started! An electronic chip on our shoe lace triggered our starting time, and incredibly, the crowd spread out quickly, and we were able to walk at a fast (but comfortable) pace, as we bobbed and weaved past slower walkers (yes, there were slower walkers, lots of them!). We hadn't traveled a quarter mile when an unexpected cough caught me off-guard, and made a mess of the new filter in my hands free valve. Ordinarily, I am a very discreet 'cougher' and always use the privacy of a restroom or my own office at work, so this early set-back had me especially worried. Armed with two pocketfuls of Kleenex, it didn't take me long to realize that even in this crowd, people had better things to do than stare at me, and besides, I'll never see these people again! Our pace slowed only slightly as Sue noticed my difficulty, and allowed me to nonchalantly make the needed repair without breaking stride. It took a couple attempts, but I finally had the filter clean enough to resume normal breathing, and away we went, careful not to make that same mistake again.

The gloom of the early morning gave way to a beautiful blue sky, white billowy clouds, and the most pleasant breeze anyone could have hoped for. The route included a lap around the 2 1/2 mile oval that is the Speedway, residential areas and, eventually, returning in the direction of the impressive skyline of Indianapolis. High school bands, rock bands, country-western bands, and even square dancers and cloggers lined the route, such that we were not out of earshot of one before approaching another. Even in the neighborhoods, folks were sitting on their front porches, cheering and waving, and wishing us all well. It was an atmosphere that was so unexpected, that it is almost indescribable. To be among that many people of all shapes and sizes, and from all walks of life, and each one smiling, laughing, and offering encouragement, was an experience I'll never forget.

Three hours, 14 minutes, and 14 seconds after crossing the starting line, Sue and I finished, hand-in-hand, tired but not exhausted, and with a feeling of accomplishment I had not felt in a long, long, time.

Officially, 30,082 people actually finished the 13.1 miles. Sue and I finished 25,032 and 25,034, respectively, and averaged just over 4 mph. The stats were further broken down by gender and age, and I finished 779 out of 932 males in the 55-59 age group. Those statistics probably aren't too impressive to most people, but for a guy who wasn't expected to walk out of the hospital 9 years ago, I am totally elated.

The 'Mini' has had a surprising and almost profound effect on me, due in large part to my initial worry and apprehension, but then followed so closely by a sense of accomplishment and exhilaration. It has also demonstrated to me, in a very real way, the value of regular exercise, and of trying something that you have been afraid to try. Add to all of this the beautiful weather, the friendly crowd, and the company of one of the people I love most in this world, and it could not have been a more perfect day.

Thanks for reading to the end, and may God bless all of you, as He has blessed me!

Dave Greiwe

 


 

 

 

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