Support for LateToSchool

NYMomof2 · May 2, 2008, 11:06pm

Please post the link when you find it, ADad! Although my mental image is fairly clear…

ADad · May 3, 2008, 12:30am

–Winston Churchill

epistrophy · May 3, 2008, 6:59am

Here’s a wonderful photograph of two cancer “survivors” - one a young man of 18, the other a woman of 93 (“sporting a pink feather boa”):

[Baxter</a> Bulletin - <a href=“http://www.baxterbulletin.com”>www.baxterbulletin.com</a> -](<a href=“http://www.baxterbulletin.com/apps/pbcs.dll/article?AID=/20080503/NEWS01/805030309/1002]Baxter”>http://www.baxterbulletin.com/apps/pbcs.dll/article?AID=/20080503/NEWS01/805030309/1002)

bethievt · May 3, 2008, 7:51am

My dear friend who had chemo several years ago for ovarian cancer (don’t remember the stage, but not the earliest) has finally been told by her MD that she is cured! And I was with her for some of the treatments so I know she was given Benadryl. She took it as an opportunity to relax and take a nap. It probably affects different people differently, lts, but I wonder if you are sort of “fighting” the effects and you might want to try relaxing into them. Just a thought.

latetoschool · May 3, 2008, 8:06am

LOL I cannot imagine such a thing ending up in the public domain, it was weird enough discovering that an entire waiting room full of people saw me do that and then saw me panicking over my daughter’s prank about my pants splitting.

This is perhaps an important segue about caregivers. I am convinced that it’s easier to be the sick cancer patient than to be the caregiver, especially if end stage approaches. However, every single one of the 16 survivors of small cell I have spoken with instantly know what I mean by “parasitic” caregivers - the sort of person who doesn’t have any animosity or ill will but who also feels powerful when in the company of someone who is very sick.

I have such a person in orbit in my world and so we have severely restricted her access to me; however, my daughter is very, very different, for which I am so grateful. If I tell her I cannot walk up the hill; she challenges me to do so anyway; tell her I feel high and spacy after chemotherapy and she challenges me to hurdle over barricades. Every expression of sickness or not feeling well that I offer to her is met by a direct, firm challenge to overcome it, or at least steer around it. She won’t even offer to carry my briefcase for me, believing that I should not cave to weakness. Any negative statement I make is met by a positive statement from her. And when I thank her for her efforts (it’s very important to thank one’s caregivers, often) she tries to empower me further by telling me that the strength is coming from within me, and not from anything she has said or done. Any expression of weakness from me, she tolerates not, and constantly reminds me of my strengths, in word and deed. (My other caregivers are also like this, but none more emphatic than my daugher.)

In my opinion, this is the tonality and direction of support that a very sick person needs; and in the more singular dimension of cyberspace, the very positive examples posted by Epistrophy, balanced with the provocative and inspirational posts from ADad.

Bottom line, if caregivers are lurking, focusing on what is positive helps the patient enormously. If you’re the patient and you have negative or parasitic caregivers in your world, get rid of them - end the relationship if you have to. These people mean well and in all likelihood have no idea what they’re doing but encouraging the patient to give in to their illness and the focus on negativity will prove very harmful in the end.

latetoschool · May 3, 2008, 8:09am

Bethievt, you’re right, everyone has told me to just give in to it, some have even said to me that a lot of people will pay a lot of money for that sort of feeling!!! Sorry, I just hate it. Just cannot stand how it makes me feel. But I cannot stand how even one glass of wine makes me feel either.

But enough of complaining; if this is what I have to do to defeat this cowardly disease, it’s a small price to pay.

sueinphilly · May 3, 2008, 8:09am

LTS - I think you should go around and be the commencement speaker at medical schools. Your spirit and uplifting attitude is what the future doctors need to hear.

runnersmom · May 3, 2008, 9:02am

Boy do I agree with that last suggestion. As I helped care for a very dear friend diagnosed with pancreatic cancer it would have been so helpful to have even one medical person say, “we know the odds are against us, but you know what, someone has to be the outlier and it might as well be you.” We were all bright, thoughtful, realistic people, but just one positive comment would have been worth its weight in gold. My friend, much like you LTS and Randy Pausch, had a wonderful attitude and support system and fought that thing valiantly. He, unfortunately, did not benefit from the miracle, but I will always believe that his fighting spirit and that of those around him made his time much more meaningful. I have followed your journey since the beginning and you (and your daughter) inspire me and countless others each and every day. My S recently moved to Washington and when we visited and were circling the Tidal Basin enjoying the cherry blossoms I looked around furtively saying to myself, “maybe that’s LTS!” Be well…

epistrophy · May 3, 2008, 9:12am

Although the season has now passed, this gives me an excuse to post one more “cherry blossoms” haiku by Issa (1763-1868):

[Kobayashi</a> Issa: In the cherry blossom’s shade](<a href=“http://www.poetry-chaikhana.com/I/IssaKobayash/Incherryblos.htm]Kobayashi”>http://www.poetry-chaikhana.com/I/IssaKobayash/Incherryblos.htm)

mootmom · May 3, 2008, 11:01am

And the cherry blossoms bloom year-round in Second Life. The LTS garden will always be in flower.

epistrophy · May 3, 2008, 2:13pm

and another

As some of you know, I had Askins tumor (cancer) of the spine-three times over the past 9 years. Prayer has had a monumental part. More importantly, Blessed Chaminade has been an integral part of my healing. Blessed Chaminades life and mission have been inspiring to my family and me. The church as a whole and specifically our parish have been amazing in my journey.

The year was 1998 and I was a 15-year-old sophomore in high school. One morning my legs felt numb and my chest was losing feeling too. The doctors found an egg-sized tumor around the upper section of my spinal cord. After emergency surgery, feeling was regained and I suffered no paralysis. I was diagnosed with Askins Tumor-a very aggressive, rare and relatively unknown type of sarcoma cancer, found in only 3 to 30 people each year. My oncologist, Dr. Bergamini, became the first miracle in my whole experience. Then came the fact that I did not die that weekend, which was a real possibility. A year of chemotherapy began and 6 weeks of radiation. During this, this parish was the backbone of my family and helped with countless things-meals, visits, prayers, gifts, you name it.

The year of 2000 I was chosen by our church to go to Rome, Italy for the beatification ceremony of Blessed Chaminade, founder of the Marianist community of priests and brothers. He was beatified after a South American woman prayed to him and was miraculously cured of her lung cancer. I prayed to God and Blessed Chaminade for a healthy life. This began my deep connection with Blessed Chaminade. I still remember praying while standing and looking up at the beautifully lit Trevi Fountain.

In December of 2000, cancer cells were discovered again in my bone marrow. For the next 5 months, I was more in than out of the hospital but somehow graduated on time. Healthy cells were taken in May of 2001 to prepare for my stem cell transplant. A stem cell transplant works by successfully killing a persons entire immune system and bringing the person as close to death as possible. A few days later a syringe puts the previously frozen stem cells into an IV in order to hopefully grow a new healthy immune system. I had some very severe reactions but surpassed all odds and pulled through. Later on, doctors have told me I am one of the sickest kids they have ever seen that did not die! So many prayers were monumental in this miracle.

The following fall came and I started college. The day after Thanksgiving, we learned a new Askins Tumor was growing between my heart, lung, pulmonary artery and spine. Medically, there was not much else to do. This was when I asked Dr. Bergamini, How long do you think I have? He explained that he did not know, but maybe a week to a few months, at the most, depending on what organ was invaded first. With his strong Catholic faith, he believed in miracles and had even seen some.

I dove into art, traveling, writing and speaking. The following fall, a whole year having passed, I was still alive as can be but was experiencing more pain. To help, I received 3 very low doses of chemotherapy. In December and January, a scan showed little to no activity in the tumor region.

During the entire time, my doctors scoured the globe for options from clinical trials to radical surgeries and new radiations. It seemed the expert doctors and researchers were not willing to help or did not feel they could do anything. In any case, I definitely would not be cured in their eyes. No one else had ever survived my cancer after it reoccurred after transplant. Out of everyone, my family and Dr. Bergamini never gave up hope and I pleaded with God and Blessed Chaminade.

By May of 2004, an amazing surgeon, Dr. Blucher, came from the East coast. He wanted to take the tumor out. The surgery removed the entire tumor, which by this time was the size of a small Nerf football. It had grown to capacity and sat snugly against my fragile organs but miraculously had not invaded any of them though! The tumors biopsy results showed the tumor had completely died inside me. In medical terms, it is a complete miracle and very unexplainable. I am the only known case to survive a relapse of Askins Tumor following a stem cell transplant. It is so remarkable that the Catholic Church and the Vatican are doing a formal investigation into my miracle. Church officials are strongly considering using my case to make Blessed Chaminade become Saint Chaminade because of my prayers and of my family and friends and our church! (He would be the first Marianist to become a saint.) I find great joy in seeing the positive sides of everything I have been through.

I continue to do a lot of art, writing, traveling and national inspirational speaking. I try to balance the cancer-related things (like lots of doctors appointments and side effects) with all the non-cancer things like school. I have accepted that cancer will never leave me. It is embedded in me with what it has left behind - physically, mentally, emotionally and spiritually- for good and for not so good.

Cancer is the absolute best and worst thing that has ever happened to me. Because of it, I am driven to eventually become an art therapist and continue helping others through speaking, writing, art and volunteering. As Albert Einstein once said, There are 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle. I choose the latter and I thank God and Blessed Chaminade for the miracles along the way!

[OBSESSED</a> WITH LIFE: Parish Newsletter Piece](<a href=“http://iamobsessedwithlife.blogspot.com/2008/05/parish-newsletter-piece.html]OBSESSED”>Obsessed with Life: Parish Newsletter Piece)

mimk6 · May 3, 2008, 6:42pm

“Every expression of sickness or not feeling well that I offer to her is met by a direct, firm challenge to overcome it, or at least steer around it.”

It sounds to me like the apple doesn’t fall far from the tree:)

epistrophy · May 3, 2008, 7:14pm

and another (this one in Canada)

“The Power of Good Intentions”

Battling a lifethreatening disease isnt just about the latest medical care and treatment. Its as much about the will to survive and the positive intentions of those around you.

Just ask Department of Justice Canada lung cancer survivor Constance OLaughlin.

Ive experienced a side of humanity that most people will never experience, says OLaughlin, a lawyer in Aboriginal Law Services in the Prairie Regions Calgary Office. People have been just amazingso supportive. I cant even describe… Her voice cracks with emotion and trails off.

It was in August 2005 that OLaughlin, a competitive marathon runner and, by all accounts, a model of fitness, was diagnosed with lung cancer.

I knew something was wrong. I had a weird chest cough for a month that just seemed to accelerate that summer. But I thought that it was maybe asthma from the mould, from all the rain we had.
The support from those around her complemented the lawyers own will to survive and her belief in the power of positive intentions.

Only it wasnt asthma. It was a seven-centimetre tumour on her left lung. Im pretty sure its lung cancer, her physician had said over the phone.

I was absolutely numbcompletely paralyzed, she recalls on receiving the news while still at the office.

After absorbing the initial shock of the diagnosis with the help and instant support of three of her colleagues, Judy Bares, Shane Martin and Bruce Piller, she immediately began researching the statistics.

They were grim.

According to the Canadian Lung Association, only 17 percent of women (and 14 percent of men) survive longer than five years after being diagnosed.

In three days Id gone from worrying about my running times to this.

What happened next set the tone for how OLaughlin would approach her treatment.

Mike Marshall, a former Canadian National Team speed skating coach and her running coach, happened to be in town that day and paid her a visit.

Theres only this one little part of you thats affected, he told her. Youre healthy, youre fit. Somebody has to be in that (survival) percentage and its going to be you. Youre going to treat this like any other race. Every program I give you, you do. Theyre going to give you a different program. Youre going to start and finish. Thatll be that.

Recalls the lawyer: That night, I thought to myself, You know, hes right.

And with that, OLaughlin turned her attention to treatment and the healing process.

She learned she had non-small cell lung cancer, the most common type of lung cancer. In her case, it was inoperable because of its proximity to her heart. Due in large part to her high level of fitness, her lung specialist was able to refer her to a U.S. government-funded clinical trial at the Tom Baker Cancer Centre in Calgary. As part of her treatment, she received chemotherapy once a week along with daily, concurrent doses of radiation that, by her description, were beyond levels deemed to be extremely radical.

I really believe that part of my whole healing process is because of the people surrounding mefriends, colleagueseveryone. I think people really underestimate that.

During these two months of intensive treatment, OLaughlin continued to work on large files, preparing the written and oral arguments for a constitutional challenge by the Stoney Band of Section 50.1 of the Federal Courts Act. She also appeared on behalf of Canada and was successful at the trial division. (The issue is currently under appeal.)

The Department was amazing. They set me up at home with a laptop so that if I was a bit tired, instead of working at the office, I could work from home. That way, I could save and use the commuting time to take a nap if I needed, because the drugs were quite powerful. And my colleagues were second to none. They have been so supportive.

OLaughlins colleagues at Justice are also a part of her 175-member Healing Team to whom she sends regular email updates about her treatment and progress.

People wanted to do so much for memake me something, cook me something. I told them, I dont need that. I just need you to believe in me. Believe that Ill get through this. Thats all.

And they believed.

Some prayed. Some sent positive energy. Some, including colleagues in the Edmonton Office, sent healing bracelets and homemade gift baskets. Many sent cards.

Ive put them on the mantle of my fireplace, with the words facing out, so you dont see the front of the card. The wordspositive, healing wordsface me. To me, thats whats working.

The support from those around her complemented the lawyers own will to survive and her belief in the power of positive intentions.

I think you have to embrace drugs if you go into therapy. If you believe youre going to get sick, you probably will, she says, noting she went so far as to name her radiation machine Raymond and tape yellow Lance Armstrong bracelets to it and other treatment equipment.

They were part of her Healing Team, after all.

Having decided that she was not going to suffer from the more severe side-effects from the drugs during treatment (and she didnt), OLaughlin continued to train, albeit at a slightly reduced intensity, and even managed to run Melissas Road Race (a half marathon) in Banff.

I dont care how many Bostons (marathons) Ive run, that was my biggest accomplishmentto be able to run that through treatment.

Since her diagnosis, OLaughlins approach to her work has changed. Before, I strived to achieve a work-life balance. Now, I make certain that that happens.

Today, she is slowly stepping up her training routine. She has started to skip and has resumed speed work. She continues to have a CT scan every three months, with the results of her last scan showing that the tumour had shrunk from seven centimetres to two-and-a-quarter centimetres.

She has been involved with the Terry Fox Foundation and Ironcops for Cancer, and also appears on promotional* materials for the joint Calgary Health Region-University of Calgary Reach! fundraising program.

She has also spoken to the media about her experience, most recently appearing on Canada AM with her oncologist.

Its just part of my contribution back, she says humbly.

OLaughlin is also laying the groundwork for a lung cancer resource website themed on survivorship. Through the website, she hopes to raise awareness about lung cancer and to provide hope to both doctors and patients alike.

I really believe that part of my whole healing process is because of the people surrounding mefriends, colleagues, everyone. I think people really underestimate that. They underestimate them, and they underestimate themselves.

[justice</a> canada Vol 6 No 1](<a href=“We couldn't find that Web page (Error 404) - Department of Justice / Nous ne pouvons trouver cette page Web (Erreur 404) - Ministère de la Justice”>We couldn't find that Web page (Error 404) - Department of Justice / Nous ne pouvons trouver cette page Web (Erreur 404) - Ministère de la Justice)

astrophysicsmom · May 4, 2008, 12:31am

mimk6—I wholeheartedly agree about the apple not falling far from the tree. LTS–you done good with your daughter. With you as her mom, how could she be any other way!!! (btw, the mental picture of the hospital hurdles kept me smiling all day!). You continue to inspire.

ADad · May 4, 2008, 12:59am

–Ronald Reagan

epistrophy · May 4, 2008, 1:49pm

living with lung cancer

“Stricken sisters’ cancer humor book finds laughs amid pain”

Admit it, cancer patients, you have at least toyed with the idea of playing the cancer card. You know, the one that gets you special treatment because you have a deadly disease?

Well, make room in your wallet, because three members of a cancer-stricken family have printed up Cancer Cards to promote their self-published humor book about the painful absurdities of dealing with the disease.

"This card is good for getting you out of anything you really don’t feel like doing,‘’ reads the bright blue card. The legend is surrounded by a colorful assortment of half-grinning, half-frowning smiley faces - the logo of the sisters’ graphic novel, "Smilies are Naturally Bald.‘’

Irena Monticelli, diagnosed with lymphoma in 2006, created the book with sisters Rachel and Felicia, who has lung cancer, to offer some comic relief from the frustrating and sometimes embarrassing realities of cancer treatment.

Cancer isn’t fun but "you can’t live in that dark place,‘’ Irena told The Frederick News-Post. "You have to have a little fun with it; otherwise you’ll be living in darkest despair.‘’

The book follows Joe, a cancer-striken laboratory rat, through chemotherapy and radiation. In Joe’s world, a CAT scan involves a cat; Joe’s hair falls out so fast he wakes up with hairballs in his mouth; and disorientation from "chemo brain’’ causes him to put hemorrhoid cream on his toothbrush, something one of the Monticelli sisters did, although she stopped before brushing.

"You have to laugh once in a while because it’s so crazy,‘’ said Irena, 28, of Green Valley, Ariz. "There are things they don’t tell you that happen,‘’ like red urine caused by a cancer drug, and "chemo B.O.,‘’ from the chemicals leaching out of your pores.

Every page of the book features a different smiley face. There’s Chemoed Smiley, green and zonked out in an easy chair; Nasal Drip Smiley, because once your nasal hair falls out "your nose will run at the most inconvenient times;‘’ and Good-Bye Life Savings Smiley, plastered with overdue bills.

"I just kind of drew a smiley one day and noticed it didn’t have any hair. I was bald and it just connected,‘’ Irena said.

She said she chose the lab rat character because her treatment made her feel like one.

Irena wrote the book. Felicia, 38, of Frederick, edited it, and Rachel, 36, of Oak Park, Ill., did the final layout and graphics.

After treatment, Irena no longer shows any evidence of lymphoma. She was diagnosed one year after Felicia learned she had Stage IV lung cancer, meaning the disease had spread to another organ, in her case, her bones.

Felicia said that after hearing her younger sister’s diagnosis, "I told her if we survive this, we need to do the things we want to do.‘’

A sculptor, collage maker and former manager of Frederick Community College’s writing center, Felicia brought marketing experience to the project. Beside placing copies of the $23 paperback in the college bookstore and local hospital gift shop, she got a blurb onto the American Cancer Society’s Cancer Survivor Network Web site.

The book, related T-shirts, greeting cards and refrigerator magnets can be purchased at [CafePress.com:</a> Shop, create or sell what’s on your mind with custom T-Shirts, unique gifts and more.](<a href=“http://www.cafepress.com%5DCafePress.com:”>http://www.cafepress.com)

What you won’t find in the book are somber words of advice on living with cancer, although Irena said she has read plenty of those.

"That’s great, but you can only read so much of that,‘’ she said. Humor "makes it more human.‘’

[Stricken</a> sisters’ cancer humor book finds laughs amid pain](<a href=“KTAR.com”>KTAR.com)

[Amazon.com:</a> Smilies are Naturally Bald: Irena Monticelli,Felicia Monticelli,Rachel Monticelli: Books](<a href=“http://www.amazon.com/Smilies-Naturally-Bald-Irena-Monticelli/dp/0980164206/ref=sr_1_1?ie=UTF8&s=books&qid=1209922862&sr=1-1]Amazon.com:”>http://www.amazon.com/Smilies-Naturally-Bald-Irena-Monticelli/dp/0980164206/ref=sr_1_1?ie=UTF8&s=books&qid=1209922862&sr=1-1)

marite · May 4, 2008, 2:55pm

epistrophy:

You continue to amaze with your internet resources!

LTS: You are always in my thoughts. Best wishes to you and your D. I still remember your story of being lost in a different city and calling her to find out which hotel you were staying at and what car you had rented. My Ss would not know such details to come to my rescue!

mootmom · May 4, 2008, 6:49pm

This just in: John Atkinson has been announced as the winner of this year’s Golf Digest U.S. Open Challenge!

[Golf</a> Digest Announces The Winner Of The U.S. Open Challenge Contest: Magazine: golfdigest.com](<a href=“http://www.golfdigest.com/magazine/2008/06/usopencontest_winner]Golf”>http://www.golfdigest.com/magazine/2008/06/usopencontest_winner)

We have a winner, and it wasn’t even close.

John Atkinson, an 8-handicapper from Omaha, was the clear choice in an online vote, and he’ll join Matt Lauer, Tony Romo and Justin Timberlake in Golf Digest’s U.S. Open Challenge at Torrey Pines South Course in June.

Atkinson received 48,756 of the 117,331 votes cast for the five finalists in the first U.S. Open Contest, conducted by Golf Digest, the USGA and NBC Sports. Erik Norton, from Boston, was the runner-up, with 25,948 votes. . . .

“This whole thing has been exciting and overwhelming,” said Atkinson, who is battling lung cancer. “The support has been amazing. I think people understood my story and have related to it. I wish I could say I was cancer-free and 100 percent, but I’m not. But that’s not going to be the reason I break 100 at Torrey Pines or the reason I don’t.”

There will be a one-hour NBC Sports broadcast about the event from 2-3pm EDT on Sun. June 15.

epistrophy · May 4, 2008, 8:56pm

and another

“After Lobectomy Removes Lung Cancer, Another Marathon In Sight”

Rod Simonds, 64, ran his first marathon in 1999. He ran his fourth in December 2005 a week before discovering he had a small tumor growing in his left lung. Now, with the upper lobe of the lung removed in a minimally invasive procedure performed a year ago at Cedars-Sinai Medical Center, he is training for his fifth 26 mile run, which he hopes will be the ING New York City Marathon scheduled for Nov. 4.

Simonds runs with the encouragement of Robert McKenna Jr., M.D., the thoracic surgery specialist who performed his lobectomy. Surgical director of the Center for Chest Diseases and chief of Thoracic Surgery and Trauma at Cedars-Sinai, McKenna is a pioneer in video-assisted thoracoscopic surgery (VATS) and has researched and written extensively about the procedures and technologies that make it possible to perform major chest operations through small incisions, reducing hospital stays, pain, recovery times and complication rates.

“He told me I could still run marathons, just don’t do them as fast,” says Simonds, of Westlake Village, who has lived in California for about 28 years after spending his first 36 years in New York City.

The lung cancer diagnosis came as a complete surprise. As part of a routine physical exam, Simonds underwent a chest X-ray in November 2005. He ran the Las Vegas Marathon a couple of weeks later, completing the course without even having to walk part of the way. Although he felt fine, he received a call from the doctor’s office about a week later saying he needed to have more diagnostic tests performed because something suspicious had appeared on the X-ray.

A CT scan and PET scan confirmed the existence of a very small tumor less than 2 centimeters and Simonds was referred to McKenna, who scheduled the operation to remove the lobe as well as lymph node samples for biopsy. Lab tests later showed that the cancer an adenocarcinoma (non-small cell carcinoma) had not spread beyond the lobe. McKenna says Simonds’ prognosis is excellent and no further treatment is needed, although he does return about every six months for follow-up X-rays and CT scans.

Thanks to the minimally invasive procedure, Simonds’ down time was very short.

“I woke up in the recovery room right after noon on the 23rd of January (2006) after the hour-and-a-half procedure. I was home by noon the following day and went for a two-mile walk with my wife,” says Simonds. Within two weeks of the operation, he participated in the Redondo Beach Super Bowl 10K (6.2 miles), walking about two thirds and running the balance.

“I think my quick recovery is indicative of my health or condition going into this and Dr. McKenna’s skill. If you looked at me today you would not be able to tell I had surgery one year ago,” says the self-employed certified public accountant, adding that his scars are barely visible. “It doesn’t even look like a cat scratch.”

[After</a> Lobectomy Removes Lung Cancer, Another Marathon In Sight](<a href=“http://www.medicalnewstoday.com/articles/66059.php]After”>http://www.medicalnewstoday.com/articles/66059.php)

(P.S. re golfer John Atkinson: how cool for him - not only to be able to play in this, but to have received such widespread support.)

ADad · May 4, 2008, 11:54pm

–Kieren Perkins [AUS], twice Olympic gold medalist and twice silver medalist; world record holder in the 400 meter freestyle (five years) and 1500 meter freestyle (seven years).

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