Support for LateToSchool

epistrophy · April 17, 2008, 6:41am

and another (plus three “survivors” of other forms of cancer)

“Cancer survivors feel ‘The obligation of the cured’”

Ron Bye, who was diagnosed with testicular cancer at the age of 20 and beat a mortality rate of 90 percent.

Kathleen Smith, diagnosed with lung cancer at the age of 29, and living today with one lung and leukemia from complications of her treatment.

Scott Joy, whose testicular cancer did not stop him from riding thousands of miles in charity bicycle races to raise money for cancer treatment.

Kim Chrane, whose brain tumors have forced her to undergo seven surgeries, and left her with grand mal, focal, tonic and speech seizures.

Surviving cancer is their common bond, and their current work in cancer advocacy and prevention is what keeps them strong.

“We have what is called ‘the obligation of the cured,’” Joy said.

While cancer will always be in the back of their minds, the four made the decision that it would not prevent them from devoting their lives to raising money, promoting cancer prevention, and being actively involved in raising awareness.

Ron Bye: ‘I was not expected to live’

Bye became indoctrinated to the cause when he was first diagnosed with testicular cancer 33 years ago.

As a strong, independent person, the treatments and procedures Bye endured to treat his cancer were almost more than he could bear.

Even after he was cleared of cancer, Bye kept silent about his fight for almost 30 years, mainly because of the social and emotional impact of surviving the disease.

“It wasn’t something you talked about. I was not expected to live,” Bye said. “So I kept quiet. Then three years ago, on my 50th birthday, I started seeing that I had a story that needed to be told.”

Today, Bye is a leader in cancer advocacy for New Hampshire. The survivor has met with political leaders, organized LiveStrong summits, and maintains ongoing involvement with a wide variety of cancer advocacy groups in New Hampshire and around the country.

The leader has also been appointed to the steering committee for the 2008 LiveStrong summit in Columbus, Ohio. The event will bring together more than 1,000 delegates from the United States and Canada.

Bye also constantly pushes for funds to allocate toward cancer research.

“After my treatment, the doctor sat me down and said ‘everything is wonderful. You have the statistics today of getting cancer as anyone walking down the street.’ And I said, you know, that’s great information, but until you can tell me why I got it, your stats mean nothing.”

Bye sees public support as necessary not only for increased awareness, but also to save lives through adequate prevention.

“It is far less expensive to educate, screen, and early treat than it is to deal with advanced disease,” Bye said. “What drives (a lack of support)? A lack of support from the public. This is a beatable disease. Why aren’t we beating it? For no reason.”

Kim Chrane: Fighting for education

Of the 600,000 people who will die from cancer this year, 200,000 of that number could have changed their fate by applying preventative measures and using current knowledge.

Thirty-three-year-old Kim Chrane was already no stranger to the devastating effects of cancer when she was diagnosed with recurrent meningioma, a series of small brain tumors.

Chrane had lost her father only two years earlier to lung cancer.

A busy professional, Chrane had started to notice what she though were worsening sinus headaches, and masked the pain with over-the-counter medications.

It wasn’t until she experienced a grand mal seizure and was rushed to the hospital that doctors discovered her tumors.

While she has undergone seven intensive surgeries and today walks with a cane, Chrane feels that it is her duty to overcome her own personal hurdles and become a voice of strength and encouragement to others.

Today, Chrane is the LiveStrong Army leader in Dover, an organization that unites people to fight cancer and raise awareness.

The survivor is a strong advocate of prevention, and wants to see more cancer education in schools.

“Education in schools would help a lot,” Chrane said. “You need to lay it out there and get people more involved.”

**Kathleen Smith: ‘Not on my watch’

Even before her own diagnosis [of lung cancer], Kathleen Smith, 37, had already experienced the pain of seeing several family members succumb to the disease.

Having lived through various forms of cancer with her grandfather, sister, mother, and aunt, Smith was still unprepared when doctors diagnosed her with lung cancer at the age of 29.

Smith works as an income development executive for the American Cancer Society. She has been involved with the 2007 LiveStrong Challenge, has acted as a delegate for LiveStrong day in Washington, D.C., and has been involved in many advocacy and fund-raising events.

“The statistic that really gets to me every time is that we lose one person every 58 seconds in the United States alone,” Smith said. “This needs to become a national priority. We need people to stand up and say ‘not on my watch.’”

Even after successful treatment, Smith sees many patients and their families left behind to deal with an enormous burden that many aren’t prepared for.

“The disease is treated, but the person isn’t necessarily mentally ready to deal with the implications,” Smith said. “If the person isn’t, their family certainly isn’t either.”**

Scott Joy: Not afraid to speak up

After being diagnosed with testicular cancer in 2003, Scott Joy became involved with charity bicycle rides, including the Ride for the Roses in Austin, Texas, and several LiveStrong races.

It was at these events that Joy eventually realized the strength of the survivors, and drew inspiration from their experiences.

“It wasn’t until I became involved in advocacy myself that I realized how many people that were afraid to speak up,” Joy said. “I didn’t even know that I could speak up until I was involved with the events.”

Joy is part of the LiveStrong Army for the New Hampshire Seacoast, and works on cancer issues in his local community.

As an advocate on Capitol Hill for LiveStrong day in 2006 and 2007, Joy has found an outlet that lets him make a positive impact on behalf of those who are afraid to speak out otherwise.

Struggles for funding

One of the largest and most frustrating issues for the survivors is the lack of monetary support from state and federal government.

From the original $2 million established for cancer advocacy and research in New Hampshire’s 2008 budget, only $250,000 remains, the rest having disappeared back into the budget to cover “other shortfalls.”

The group adds that the $4 million appropriated for 2009 will likely follow the same fate.

“Where is our state government? In Texas, proposition 15 allocated three billion dollars,” Bye said. “And we’re struggling in the state of New Hampshire to get two million?”

The group believes that the more people who are involved in helping their cause, the more likely the government will see it as an issue of great importance.

“We need more people to get behind this in order to make it a national priority,” Bye said. “People can get overwhelmed too easily about trying to change the world. You don’t need to do that. You just need to do a small part.”

With current funding in such a critical state, many cancer advocates view this year’s election as especially important.

“This is the most important election year in cancer’s history,” Bye said. “The current state of funding is just not OK.”

‘Pre-existing condition’?

In addition to funding decisions, health care is an extremely important issue for everyone who is suffering from the disease.

For a time, Bye found himself on two insurance plans at once, in order to avoid having his cancer become a “pre-existing condition,” which could cause premiums to skyrocket.

Other members have found that even a day’s lapse in insurance coverage could have huge implications.

“If I hadn’t had insurance coverage when I was going for treatment, I don’t know what I would have done,” Smith said. “I wouldn’t have been able to cover the cost myself.”

All four members are in agreement that the future of cancer funding and support relies solely on the actions of everyday people.

“We want people to do something, and it doesn’t have to be huge,” Bye said. “The fact is, cancer affects everyone. Use your voice and get involved. You can make a difference.”

[Cancer</a> survivors feel ‘The obligation of the cured’](<a href=“http://www.seacoastonline.com/apps/pbcs.dll/article?AID=/20080417/LIFE/804170325]Cancer”>http://www.seacoastonline.com/apps/pbcs.dll/article?AID=/20080417/LIFE/804170325)

ADad · April 17, 2008, 2:09pm

.
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mythmom · April 17, 2008, 4:21pm

ADad: In your own quiet way you are inserting pearls of wisdom. Thanks.

LTS: Thinking of you.

epistrophy · April 17, 2008, 7:12pm

and another

“School gears up for Relay for Life”

On Friday, April 18, Lake Forest College students will be participating in Relay for Life, a fundraiser sponsored by the American Cancer Society to raise money for cancer research. Last year Lake Forest College had over 30 teams participating in the event, raising over $32,000. This year 296 participants signed up in 38 teams with over $20,000 raised.

Cancer survivor Ethan Helm '07 said that was taken aback by the number of students involved in last year’s Relay. He emphasized the great atmosphere and enormous amount of support for the cause.

Event Chair Taylor Bogdan '08 said that in addition to raising money to find a cure, the relay has “the ability to bring the campus together to serve others and really rally behind something that affects us all, no matter who we are or what circle we are in.”

Professor of Psychology Sergio Guglielmi, who spoke at last year’s event about his experience with lung cancer, believes fundraising is a great way to promote awareness and future research. He also saw speaking at the event as an opportunity to reach out to other people about cancer, specifically lung cancer. “Since lung cancer is usually behavior-related, it can be prevented,” says Guglielmi. “If I can get one student to stop smoking, it is worth it.”

This year’s Relay for Life will start Friday, April 18 at 6 p.m. and last until Saturday, April 19 at 6 a.m. at the Lake Forest College Ice Rink. Teams can set up their campsites around 4 p.m. Entertainers Andrew Fraker, Victor Fox and Fast and Cheap will play at the event. There will be a Rock Band video game tournament, along with a yoga session and talent show.

The Opening Ceremony starts at 6 p.m., the Luminaria Ceremony at 10 p.m. and the Fight Back Ceremony at 4 a.m. The Closing Ceremony will be at 5:30 a.m., with the event ending at 6 a.m. There will be a special Survivor and Caregiver reception to honor the survivors of cancer along with those who have cared for someone suffering from the disease.

[School</a> gears up for Relay for Life - News](<a href=“http://media.www.thestentor.com/media/storage/paper850/news/2008/04/17/News/School.Gears.Up.For.Relay.For.Life-3333424.shtml]School”>http://media.www.thestentor.com/media/storage/paper850/news/2008/04/17/News/School.Gears.Up.For.Relay.For.Life-3333424.shtml)

epistrophy · April 17, 2008, 8:18pm

and another (haiku by Issa [1763-1828])

[Haiku</a> of Kobayashi Issa](<a href=“http://haikuguy.com/issa/]Haiku”>Haiku of Kobayashi Issa)

ADad · April 18, 2008, 9:55am

.

epistrophy · April 18, 2008, 9:59am

and another

“The power of touch”

Physical therapist Leslie M. Lacy, 40, performs massage on cancer patient Kristi V. Newsted, 55, of Bridgeport Township to help with swelling. The massage is soothing to Kristi V. Newsted, a Bridgeport Township cancer survivor, but the main purpose of the treatment is to reduce swelling in her leg.

Leslie M. Lacy, a physical therapist with St. Mary’s of Michigan hospital in Saginaw, moves her hands lightly along Newsted’s leg to stretch her skin and open lymph vessels to move the fluid back toward the body so healthy nodes can drain it.

“It feels very nice and it has helped my leg a lot,” said Newsted, 55, who had several lymph nodes in her groin removed as part of surgery in September to treat cancer of the vulva, or external genitals.

Mary’s Cancer Rehabilitation Program, which offers physical and occupational therapy to cancer patients to help them through the side effects of treatment and regain strength, Lacy, 40, said.

"We also work on reducing scar tissue adhesions, building endurance with exercise and just get them back on their feet.

“Not everyone knows about this,” Lacy said. “We’d like to see people earlier in their treatment so they don’t lose as much ground.”

Doctors diagnosed Newsted’s disease in August and she’s had radiation therapy and chemotherapy in the months since surgery. She had to stop working as a medical assistant at Synergy Medical Education Alliance in Saginaw, she said. But since she began rehabilitation three weeks ago, she’s been able to get back to walking for exercise.

Cancer patient Kristi V. Newsted, 55, of Bridgeport Township exercises at a St. Mary’s physical therapy office at Medical Arts III in Saginaw Township. “I’m out walking for 45 minutes a day,” said Newsted, who also is a lung cancer survivor.

Lacy first wrapped Newsted’s leg in tight bandages for 24 hours to encourage drainage of fluid from the leg. Now she wears a stretchy stocking most of the time, and will continue to use it for the rest of her life.

“You can’t cure lymphedema (swelling), but you can manage it,” Lacy said. “She does stretching exercises and walking after the massage and will continue that at home.”

The lymphatic system circulates protein-rich lymph fluid through the body, collecting bacteria, viruses and waste products, and moving through lymph vessels that lead to lymph nodes, where cells filter the wastes and eventually flush them from the body in urine.

These treatment techniques aren’t new, but St. Mary’s has dedicated a team of three therapists to cancer rehabilitation. Lacy, along with a therapy assistant and an occupational therapist, received special training and have taught the specialized massage to other therapists, so services are available at several St. Mary’s outpatient facilities.

Covenant HealthCare of Saginaw also has therapists who work on reducing lymphedema and other side effects for cancer patients.

Ashley Valliere, an occupational therapist who works at the Breast Health Center at Covenant Medical Center Mackinaw in Saginaw Township and other locations, said she helps women get their shoulders moving after surgery and uses massage to keep breast implants from adhering to muscle tissue.

“With breast cancer surgery, the muscles are cut, there is scar tissue and we give them exercises to build strength in their arm,” Valliere said. "We can break up scar tissue and keep the skin from thickening. They can do massage themselves.

“People still aren’t aware of this. We need to get family doctors to make referrals. I see some people 14 years post-surgery who can’t move their shoulders and they just need simple exercises.”

It took David A. McCollum, 49, of Saginaw more than a year after surgery to get help for the swelling in his legs caused by surgery for prostate cancer.

“It started out with subtle swelling, but then my shoes were tight and I couldn’t wear them at all. It was hard to sit down. I did not have good flexibility.”

McCollum started rehabilitation in February at St. Mary’s Riverfront facility on South Washington in Saginaw and after a few weeks saw great improvement.

“They had my legs in wraps for three days, with massage on and off, and by the third day I had lost seven pounds and could wear my shoes.”

He also wears stretch tights, but now is hitting his normal average score in four bowling leagues, he said. He took a year off from the sport during chemotherapy and radiation, which “strip you of all strength,” he said. He shows no signs of cancer cells today.

“Awareness is the best defense,” McCollum said. “I ran 5 miles a day, but I was sick enough to die any day. You have to have the tests to find the cancer. You have to know where to get help.”

[The</a> power of touch - Saginaw, Michigan Living News - The Saginaw News MLive.com](<a href=“http://www.mlive.com/saginawnews/living/index.ssf/2008/04/the_power_of_touch.html]The”>http://www.mlive.com/saginawnews/living/index.ssf/2008/04/the_power_of_touch.html)

latetoschool · April 18, 2008, 3:08pm

ADad, I very much appreciate those posts; they sustained me substantially during all of my travel this week! Thank you so much and I hope there are more of them…

My trip was fantastic; 16 hour days, and, imagine my happiness when I was one of three poeple out of 70 from private industry invited to speak, and I did a fantastic job of it judging from the bounce. For three glorious days I was emersed in Viktor Bout and Charles Taylor and all the other ilk that runs around in my head and that for some reason has me so obsessed (maybe this is why I have cancer lol); best of all, on the plane ride home, I found myself sitting next to one of my favorite authors for this genre. How in the world did I get so lucky, this never happens to me. He was so kind and gracious with his time; it was truly an honor to hear him talk about his work, and some of his experiences. But even without him I was able to interact on a very substantive level with some of the most experienced and credentialed leaders of my profession, and I am so, so happy that I went.

Once home, I was asked back to New York, so, I asked two of my doctors; one said go; one said stay, based on being immuno-compromised; so, I went with the answer I liked and went to New York. Just got back last night; had my last wbr this morning.

I feel horrible. Just simply horrible. It’s hard to describe, since there isn’t a commonly experienced physical symptom associated with it - but - the effort to make notes to speak, walk to a podium, speak, follow the notes, -etc. - simply requires a herculean physical and mental effort. Similarly, the action of getting out of bed, into the shower, then working on the makeup to hide radiation burns, drawing in eyebrows, getting the wig positioned, getting into a suit and heels, and getting out the door to a meeting just absolutely requires every ounce of strength I have.

The good news is that once one begins moving, it gets better. And my doctors assure me that this is very normal considering all that I have been through in terms of treatment, and that I will begin to feel better soon. Oh- plus I finally now have clearance to taper off these horrible steroids, which will help as well.

Some time ago in this thread, a CC member or perhaps several posted that the challenges I have had throughout life prepared me for this. I am finding that this is true; this very, very difficult battle feels like a familiar place to me. I have been here before. I know what this feels like. And I won before, and, it is therefore possible I can win again.

latetoschool · April 18, 2008, 3:10pm

Epistrophy, many, many thanks.

latetoschool · April 18, 2008, 3:19pm

Mootmom, the Iranian Embassy/Second Life issue came up again, it won’t go away, there’s substantive discussion on this matter. I’m not quite understanding why it’s not cut and dried - it’s a virtual world…are the lines truly getting that blurry???

mominva · April 18, 2008, 3:21pm

I am so glad to learn you went back to NY! I kept looking for you here and hoped, correctly, that you were too occupied to post rather than too ill.
Bon voyage to that wbr!

Alumother · April 18, 2008, 3:28pm

Goosebumps.

sax · April 18, 2008, 3:31pm

Wow, LTS. Just ,wow. What a week!

Hope you feel better soon.

BATTLE ON!

ADad · April 18, 2008, 3:31pm

(You’ll recall that

[War</a> elephant - Wikipedia, the free encyclopedia](<a href=“http://en.wikipedia.org/wiki/War_elephant]War”>War elephant - Wikipedia) )

mythmom · April 18, 2008, 3:50pm

Latetoschool: I think you’d be my hero without your illness. That you can do all this after such invasive treatment makes you a SUPERHERO.

I want a latetoschool doll!

I’m so glad you went. And so glad you have such wonderful experiences. Actually people live lifetimes without so much fulfillment. Keep it coming. You’ve got lots more in your future. I’m sure of it.

Someday when you have time, I would love to hear the route that got you where you are. I am sure your story is more riveting than a novel.

Many prayers on this thread are being answered, not just yours.

NYMomof2 · April 18, 2008, 3:50pm

Wow, LTS, what a week! I am so happy you went on the trip(s). And, physically, it should all be uphill from here. Do you think that a specialized rehabilitation program such as the one described on page 162 (St. Mary’s in Saginaw) might be good for you at this point?

NYMomof2 · April 18, 2008, 3:52pm

I meant epistrophy’s post 2429 (are we really closing in on 2500 posts?)

A LTS doll! What a great idea! Long, flowing blonde hair, heels, briefcase in one hand, laptop case in the other, power suit, midstride - that’s my mental image.

I would also be interested in hearing your life story.

mominva · April 18, 2008, 3:56pm

Don’t forget the red heels ;)

latetoschool · April 18, 2008, 4:07pm

LOL I wore black patent leather this time. I had to go out last weekend and buy new suits, on account of some swelling from the steroids or the treatment or who knows why, anyway, no way in the world was I going to events like this in suit jackets that are tight, so, I bought some awesome new suits. Plus I needed some help; my face is weird; it’s slightly swollen, and, I no longer have any eyebrows, so, I have to very carefully draw them in. Plus I now have radiation marks on my forehead. Bottom line, I needed the new suits for several reasons, and so no red heels this time.

I did try to do the treadmill at my club last night, got all the way there, imagine my annoyance - I’d packed my Nikes but accidently grabbed two left shoes. I have several pair that are more or less the same so I just grabbed two and they ended up being the same shoe. For half a sec I debated walking the treadmill anyway - if I can disguise radiation burns, swelling, no hair, cancer, perhaps I can pull this off too? Then, I thought, nah, enough already…

NYMom I am looking at E’s #2429. I am concerned about the swelling. Yesterday morning was just simply horrible, but, it seems to get better as the day goes on. Gravity perhaps? My doctors do say this will improve. They said some people swell up so terribly during wbr that they actually have to get a new mask made mid-treatment. I cannot imagine that; it was a nightmare the first time. Anyway, I will take this day by day, and see how it goes. Walking, drinking certainly helps. But then you get up in the morning same place…anyway, we will see. I am lucky though - at least it’s confined to upper body.

binx · April 18, 2008, 4:11pm

Yeah, after all I have learned about you, there is absolutely no way I would believe you had two left feet.

Welcome home, glad you had a successful, envigorating trip, and I hope you saw the photo of mominva and me that I sent you!

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