After the show with Ben - my hubby.

First Look - Rust Coat

This past Saturday I was able to participate as a model in the Mid-Atlantic Cancer Support Fashion Show at Lord and Taylor in the Annapolis Mall.  Along with myself, many of the other models were cancer survivors of varying types of cancer including breast cancer, male breast cancer, prostate cancer, and my own melanoma.  I was asked to be in the show and hesitated for all of two seconds before I agreed to be in it.  I hesitated because I did not want to be out of my comfort zone.

I want this dress!!

I ended up agreeing to be in the show for a few reasons.  1)  It is for a really good cause 2) They agreed to keep me in dresses or skirts so that I would feel comfortable and 3)  How many opportunities is a 5′2″ girl going to have to do runway?  I am really glad I participated in the show.

I not only got to have a lot of fun, but it helped raise money for a good cause.  www.macancersupport.org

The one thing people say the most to me when they meet me and find out that I was diagnosed with Melanoma at 25 is that they think I have such a wonderful attitude about everything.  I found when I met the rest of the survivors/models that the thing that makes us survivors is that vibrant, feisty, great attitude.  Everyone I talked to and got to know a little was so positive and encouraging of everyone else.  What an awesome group!!

So excited to see Grandma she joined her on the catwalk!

Playing around with our M.C. - Mrs. Maryland

Lord and Taylor did a wonderful job providing us with clothes, makeup, and accessories.  They thanked us with bags full of nice little goodies, and made the day exciting and fun for everyone.   Lord and Taylor provided gorgeous clothes for me to wear, but I already had the perfect shoes to go with them!

If you would like to see the rest of the pictures from the day you can view them at http://macsfashionshow.shutterfly.com

Thanks to all my family and friend who came out to the show to watch me and cheer me on as I strutted my stuff on the runway.  I am glad that you support me and encourage me to be a survivor.

My mom especially liked the goodie bags.

I knew that it took longer to administer the new drug in my chemotherapy regimen, Taxol, but I had no idea how long.

Once hooked up for pre-medications for the dreaded Adriamycin and Cytoxan, and waiting for 30 minutes, it was ten minutes to infuse Adriamycin and another half hour or so for Cytoxan to drip in. Then I’d get a couple shots to build my immune system or white cells, and the last couple times, a shot to build my red cells. I was then on my way.

When I was told it would take three hours it drip in the Taxol and that time didn’t include the pre-meds that take another thirty minutes, my impatient meter shot to the top. And the three-plus hours followed blood work, waiting for the results and then seeing the oncologist, Paula Gill.

I turned to Dick and said, “I better get rid of my impatience now.”

“You better get rid of your impatience immediately,” he responded.

We laughed.

Ah, impatience, it’s best rushed away as in “Hurry up and get over your impatience.” Or, “What’s taking you so long getting rid of your impatience?”

Patience is not my strong suit. To tell you the truth, I never knew I was impatient until a friend pointed it out some years back. I thought I was more of the laid back kind of gal. Hah!

Making jokes does not make a laid back person.

It may take a little less time next time for Taxol as the first one they give slowly to make sure I don’t have allergic reaction – I didn’t. And I’m glad. If I did they would stop it immediately, flush me and then give it even more slowly.

The premeds included a smaller dosage of Benadryl, which also went OK. I had been concerned that I might be allergic to it after getting a rash from something or other around my abdomen shortly after my surgery. Maybe it wasn’t Benadryl after all.

I was actually pretty nervous about getting Taxol as I had built it up in my mind as so much better than the first four treatments with Adriamycin and Cytoxan. I worried that it wouldn’t be better or that I would have that allergic reaction that would stop the treatment.

Anyway, day one after chemotherapy seems to be going well.  No aches, tingling or pain, although those symptoms may accumulative with each dose.

I even got a bonus shot yesterday beyond the injections to build red and white cells. They had gotten in eight doses of H1N1 and I was lucky enough to get one. The shots don’t seem to be causing me problem and each can cause aches.

I’m told that it’s not likely I will be hit by trucks with this treatment, maybe a bicyclist not sure of his or her way, or a Yugo car, voted the worst car of the decade by the CarTalk guys. It would likely stall before it hit me, anyway.

Speaking of the Yugo, my only memory of it is was when my friend Julie, who is the best damn storyteller, told me every single Mackinac Bridge story she could think of before I went over it for the first time.  The goal was to scare me to death to cross this third longest suspension bridge in the world and longest in the western Hemisphere. At its highest point it is 200 feet above water. Oh, she had a good time, telling me about accidents during construction. She also told me the wind blew a Yugo off the bridge and when it was recovered from the water it was flat as a pancake.

I didn’t sleep that night worrying. When we finally went over the bridge the next day, I was terrified but it turned out – as most things do – to be not so bad. I later drove that bridge myself a couple times and handled it beautifully.

Meanwhile, back to the Taxol. At this moment, I’m ready to take on the world.

Unfortunately, a new moment arrives every minute.

Housecleaning is right up there on the list of least favourite things to do.  But when you’re receiving cancer treatments, housecleaning can become impossible and lead to further stress when your house becomes dirty and chaotic.  Coming to the rescue:  The Cleaning for a Reason Foundation.

This organization operates in Canada and the United States, partnering with established cleaning companies to arrange free housecleaning for women going through cancer treatments.  The website newsdurhamregion.com recently featured an article about a cleaning company in Uxbridge, Ontario joining the Foundation’s program.  The Uxbridge cleaners are delighted to help local women in need.

How wonderful that the Cleaning for a Reason Foundation created a process to match people with specific needs to other people who want to help and have the required skills.

If you ever wonder about the good in people, get breast cancer. Wait, don’t do that. Please don’t do that.

Instead look around you at the absolute goodness of others. My friend, Maureen, created and organized a list of folks who bring us meals after my surgery and during chemotherapy. Other friends cleaned my house before my brother came (hint: it’s dirty again).

Now, I have a sense that I’m being walked.

After Tuesday, when I had my walking debacle, which required rescuing by high school sons of my friend, Mary Ellen, there’s been a great interest in making sure that I do not walk alone.

Hence: Walking Ms. Susie.

Walking Ms. Susie (my apologies to Driving Miss Daisy) is designed to keep me from doing something stupid again. Several people had suggested I not go by myself before this debacle and offered to accompany me. But I had this determination to fight on.

I have been amply chewed out and have learned my lesson, by the way.

Mary Ellen, herself, called to say that she was off today and could walk with me. Other friends and my husband have also walked me, turning me back to make sure I don’t go too far and fast.

The bonus, of course, is I have company and a keeper. Dick called anyone going with me my “walk monitor.”

OK, I need and appreciate my monitors. And my walk doesn’t take long, maybe half an hour if anyone is interested.

In the meantime, this Walking Ms. Susie concept reminded me of this song from the 1950s musical, Carousel. A cousin sang “You’ll never walk alone” to actress Shirley Jones (who played Julie Jones) who was going through a tough time.

It doesn’t fit completely, but here are the lyrics, which are lot more dramatic in the musical/movie than in my life. Think a soprano singing in 1950s musical style:

When you walk through a storm

Keep your chin up high

And don’t be afraid of the dark.

At he end of the storm

Is a golden sky

And the sweet silver song of a lark.

Walk on through the wind,

Walk on through the rain,

Tho’ your dreams be tossed and blown.

Walk on, walk on

With hope in your heart

And you’ll never walk alone,

You’ll never walk alone.

P.S. Can we negotiate this “never walk alone” thing to maybe not until I’m done with chemotherapy? I need to get out in the winter and that probably will require going to the mall. Only if i don’t get going really early, I’m not sure I’ll have anyone to walk with there. Is that OK? And I want to walk before there are crowds.

When President William Howard Taft came to La Crosse in 1909 to dedicate the city’s new YMCA, the rotund president had a delicate condition requiring medical attention.

As the story was told in my first history book, Medicine: The Gundersen Experience, Taft was referred to Dr. Adolf Gundersen as the best doctor in town.

The Norwegian immigrant surgeon conducted an exam and then tried to use professional language to explain the president’s need. But there was this communication problem. I quote from the book:

“Father used some professional language with him, talking about his bowels having moved and Taft didn’t understand what he was talking about,” Adolf’s son, Gunnar recalled. “Finally, he just thumped his head and said, ‘Well, you need to shit, that’s all. You need an enema.’”

The story went around La Crosse. Some local people were offended that “a high man in public office was being treated by a rather, crude, down-to-earth doctor.”

Talk about the intersection between person and history in personal history.

I don’t know the cause of President Taft’s problem, but I have what I shall delicately call President Taft’s Disease (PTD).

Everyone talks about the side effects of chemotherapy: hair loss and nausea (well under control with drugs). But with each cycle, I swear I get plugged from my nose to my toes.  And I’m taking fiber, eating prunes, drinking lots of water, etc., etc., etc.  Really, you don’t need more details, do you? Let’s just say I’m considering a blow torch and Roto-Rooter.

When I described my blight, friends made such comments as, “So it’s official: you’re full of crap.” Oh, yeah.

President Taft probably had yes men surrounding him through political and personal decisions that he made while in office.

Last night, I had yes friends. Mary Ellen, Dorothy, Chris and Ruth (who I don’t know very well) plus Carol on Wednesday decided what I needed most was to have a clean house for my birthday.

With my brother coming to visit from Oregon on Saturday, they decided that the timing could not be better.

I want to confess from the onset that I can’t blame the state of my house on breast cancer. My mother was a perfect housekeeper. Everything was neat and orderly. Somehow I missed that gene.

Mom used to come and visit in the early days and say, “I love you guys, but you’re slobs. Would you mind if I organize just a bit?” So she did.

Andy, my only sibling, is more like my mom. And the fact that he is wiling to come here despite the risk of board of health condemnation at any time is a tribute to his love of me or insanity. You choose.

So my friends came over and started washing and vacuuming. They stayed hours, finding places to clean that I had no idea existed. Mary Ellen, who loves gardening, has this thing for bunnies, dust or otherwise. She did not miss any.

In cancer treatment thing there are good days and bad days and Thursday was not a good day, what with my PTD and absolute exhaustion. Having my friends around was a real bonus, even if I was totally useless, lying on the couch playing Facebook Scrabble and complaining about my insides.

Do you want to know who real friends are? You might think they are folks who will come and clean your house. No, they are buddies who will cheer every time you pass gas while they clean your house.

And they even discussed willingness to know when my PTD passes. I could send a message like the “eagle has landed.”

So far, I can say only that shortly after they left, the “egret landed.” I’m still mighty plugged.

I’ll keep you informed, including whether my brother shows up after reading this blog entry.

While our house is cleaned, the real problem is that Andy is not coming until Saturday. My husband suggested we move into a hotel until then.

I cannot thank my friends enough for their support and their willingness to give the ultimate gift to me. I told them how much I appreciate their willingness to come each week to clean my house.

Chris raised her eyebrows and responded, “That’s the chemo brain talking.”

On Tuesday the Wall Street Journal (WSJ) had an article about Imerman Angels (http://www.imermanangels.org) , a Chicago based organization that pairs a mentor with a newly diagnosed person with cancer.  The organization matches the mentor and the newly diagnosed patient based on as many parameters as possible, but most importantly age and type of cancer.  The implementation of a mentor program is critical when you consider the way healthcare has changed.  Yes, technology and research have increased the treatment options and prognosis for patients so now it’s time to pay attention to the person with the diagnosis; their emotional, spiritual and even their practical questions about living with the disease.

The startling part of the article was about survival rates, “…cancer survival among patients ages 25 to 35 hasn’t improved since 1975, according to the National Cancer Institute.  Some cancers are less responsive to treatment in young adults than in other age groups.  But those patients may be less likely to seek immediate help for symptoms, resulting in a delayed diagnosis, and they often lack insurance.”  This is both sad and disturbing.  I understand it developmentally; young people don’t believe they’re going to die so a symptom is something stupid that will go away.  Unfortunately the other part of the equation, lack of health insurance is an obstacle that has to be addressed.  If survival rates haven’t improved for this age group in 34 years then we’ve got a lot to do to change how things are being done.

No matter your diagnosis, finding someone who has blazed the trail is enormously helpful.  Having a go-to person who can let you know about the bumps in the road before they happen is a gift of tremendous proportion.  Most importantly, having someone who is living proof of what life can be like after your diagnosis provides hope, reduces isolation, and gives you the strength to make the tough choices that come with any diagnosis.  Look for a mentor by contacting the nonprofit organization either on the local or national level that represents those with your diagnosis.

Today IS hump day isn’t it?? I have a tendency to lose track of the day of the week, it just doesn’t seem to be so important anymore. Isn’t it amazing how things happen that way???

I have learned, that while I am not a religious person, I am very spiritual. And, I am ok with that. I do believe that everything happens for a reason…I believe there was a reason I wound up with bacterial pnemonia and in the hospital..ya know, besides my stubborness to go see a doctor sooner! Had I not been in the hospital at that time..I do not believe that everything would have come together as it so nicely has seem to be doing.

I was released from the hospital straight into the hospice program, which has made everything run so smoothly. Do you believe my social security only took 15 – 20 days at most to get approved and a back pay check into my account?? Do you understand how much more comfortable I am having a supply of oxygen..that i needed so badly so long ago…that they refused to give me prior to hospice? The weight, or stress…has been lifted off of so many peoples shoulders.

So, now I can do what I have set out to do. Have QUALITY time doing what I love, being with those I love, and making sure that each and every waking moment, my children KNOW that they are loved unconditionally, will never be judged by me, and I will always be in their hearts.

My disease has progressed some since Oct 6th, the day I entered hospice. The cancer has gone to the bones, I no longer can be without oxygen for any given period of time, and pain meds have been increased yet again. They are keeping me very comfortable, give me anything we ask for or need. This is a wonderful program! I am sure my journey is not yet close to its end, which gives me the opportunity to feel well enough to get some things that are important to me done.

Peter Criss does makeup much better than me.

I received a Facebook message Wednesday night about Peter Criss, former drummer from the band, Kiss:

“Have something in common, eh?”

I wasn’t sure if my friend, Jen, was commenting on my musical skills or makeup skills. Neither are very good.

The answer was that Criss had breast cancer a year ago, and he has made himself an advocate for men with the disease. He told CNN that he had no idea that men could get breast cancer until he was diagnosed.

“Somebody has to step up to the plate and say something to get them aware of how dangerous this is. Lots of men die: They wait, they don’t go in, they put it off,” he was quoted as saying.

In February 2008, he had a nodule removed from his chest that was not supposed to be anything serious. It turned out to be cancer. (That happens: men and women get it checked out.)

“I flipped out. I just couldn’t believe it. It’s a nightmare,” Criss told CNN.

It’s hard to take seriously someone who once dressed and performed on stage as KISS in full makeup and other accoutrements. But it is a serious problem and he wants men to take it seriously.

Men have some breast tissue behind their nipples, a reason they can get this cancer. The National Cancer Institute said less than 1 percent of diagnoses involve men. And that less than 2,000 American guys will be diagnosed this year, with 450 deaths. Symptoms include lumps, enlarged breasts, pain in the breast or discharge from the nipples. Men tend to be diagnosed later.

“Don’t sit around playing Mr. Tough Guy. Don’t say ‘It’s going to go away.’” Criss said to men. “It’s just important, just go get checked out. It’s not like you’re going to lose your manhood.”

(http://www.cnn.com/2009/HEALTH/10/15/male.breast.cancer/index.html)

Criss had the lump removed and didn’t need chemotherapy or radiation. As CNN reported, he had no scars so his doctor joked that Criss could still take his shirt off to play the drums. Criss responded with a laugh, “I’m in my 60s. Those days are over.”

Breast cancer ran in his family so he made sure that his other family members, male and female, knew about his diagnosis.

“It’s just important — just go get checked out,” said Criss. “It’s not like you’re going to lose your manhood.”

And it takes a real man to reach out to other men about this disease.

I can imagine it is embarrassing particularly in the swirl of pink – or the pouring of Pepto-Bismol on the world in October.

So pull out the blue for men with breast cancer or risk of breast cancer. It’s not all pink out there in Breast Cancer World.

P.S. I just saw another interview with Criss on CNN, where he said, “it is important to open your big mouth” and talk about this. I agree.

He also as asked what he would call a song about breast cancer if he wrote it: “Hard rock knockers.”

Conehead me at The Pearl. Jen Towner photo

I don’t or expect everyone to wear an ice cream cone on his or her head, considering how much balancing it takes to be successful with that task.

The cone I had on my head at The Pearl Ice Cream Shop in La Crosse this week for one of my silly photo shoots actually stayed better on my noggin once part had broken off.

But the art or skill involved in being a Conehead is not the goal of this blog entry. Instead, I’m pondering the issue of whether it is better to be public about what ails you or to be private.

I have, clearly, taken the public approach. I can’t imagine keeping my cancer a secret.

What I would miss are the opportunities to have people I care about  – plus strangers – express their love and concern for me.  I draw on that support and it helps me get through whatever needs to be gotten through and there is much in this cancer business.

On the other end of the spectrum was my mom’s very dear lifelong friend, Hazel. She developed cancer and then announced she did not want anyone to see her “that way.” It devastated my mother who one time steeled up the courage to visit this friend in a nursing home only to be told to leave.

Hazel was ashamed and didn’t want my mom to see her without hair. My mother would only have seen her friend, not a baldhead. In a sense she lost her friend before she had to lose her friend. As I said, it was very difficult for my mother.

This happened in an era, probably in the late 1970s, when people of Mom’s generation still were not as open about cancer. It was so frightening and only whispered about. You didn’t say the word word, cancer, out loud for fear it would bring the evil down upon yourself or your loved ones.

It’s not all generational. I sometimes hear of people today who don’t want anyone to know about their cancer.

Sometimes friends and neighbors are told to stay away rather than to be given the opportunity to express their love for this person or willingness to help. I had a conversation with one of those friends today who asked what she should do. I suggested she drop off a treat or send a note, referring to the advice she had been given to stay away but indicating she just wanted to express her support.

I’ve gone to the extreme, a reflection of my personality. It’s like Popeye would sing, “I yam what I yam what I yam.”

The photos are a way to have some fun with my baldness, to wear my lack of hair with Balditude. I have firmly decided not to hide anything. And I hope others will feel comfortable doing the same. There is no shame to losing one’s hair from chemotherapy; it’s just something that happens.

By the way, in confirming the “yam” quote of Popeye’s I was reminded he and I share distaste for spinach.

Popeye with the dreaded vegetable

“Spinach? I hate spinach!” he says in the 1980 live action movie, which apparently follows the original comic strip story line.

In my all-day kindergarten, where we had to take “a kindergarten bite” of everything set before us, I threw up regularly at the table. I was a charming child.

The school called my mother and I would go home. Since I was no longer sick I’d go outside and play. Eventually, Mom figured it out and told the school not to force me to eat anything.

Popeye succumbed to spinach in a way I never did. When he met his father, Poopdeck Pappy, he was told the only way to get strong was to eat spinach. “If you’d eat your spinach, you’d not be losin’ your fight!” Poopdeck told him.

(And you have to admit, Poopdeck is quite a name for a father to have)

Wanting to be strong and to fight out off anyone – including Bluto – seeking the affections of his beloved Olive Oyl – Popeye succumbs to calls for him to eat the dreaded vegetable, singing, “I’m strong to the finish because I eats my spinach. I’m Popeye the Sailor Man.”

This vegetable gives him the strength he needs and his muscle pop or Popeye out.

For me, the spinach ship sailed long ago. And, being the public person that I am and one who still turns green at even a whiff of the cooked stuff, you definitely wouldn’t want to serve that stuff to me for fear of what I might do at the dinner table. I’m also a charming adult.

One of the pearls of wisdom that I apparently passed on to my kids was the expression; “It’s always darkest before the dawn.”

It’s clearly not original, but no copyright remains on it.

I said it to remind my kids from time to time that things always seem the worst before the get better. And they do get better. There are ups and downs in life and the scary part about being young is that you think that if you are in a funk it is permanent. Neither a down mood nor the effects of chemo are forever.

I was absolutely convinced that I was going to get through chemo simply with my good looks, charm, humor, writing, walking three miles a day, friends and family support, and great inner strength. It would not be so rough – not for me. I mean I had all that stuff going for me.

Hah!

To say that chemo is hard is to trivialize it. It reminds me of Mattel creating Teen Talk Barbie in 1992, which spoke random expressions. The most famous was, “Math Class is tough!” The legend of this doll often was shortened to have her saying, “Math is hard!”

Always a role model for girls because of her enlightened view of the world and perfect figure, Barbie has had more than her share of careers over the years. Frankly, that girl cannot keep a job.

But the idea of saying anything close to “Math is hard” was not welcomed by those wishing to encourage more girls in math and science careers or to simply seek the best in themselves.

But I digress. Chemo IS hard. It is much harder than I imagined – it’s not the getting of the cancer-fighting poisons that is so rough. It is the overwhelming feeling afterwards that felt like I was hit by a truck.

“Pickup or semi?” one friend wrote on Facebook.

“Pickup with the first one and semi with the second,” I responded.

Then I began to fear by the fourth treatment it will be a full convoy running me down.

Frankly, the last few days I’ve felt like not only did a truck run over me, it backed up over me a few times for good measure.

In the midst of all that darkness, one of my grown babes reminded me that dawn was coming and it apparently has. I do feel better.

I’ve also come to realize that my expectations have been way to high for myself. I need to cut myself some slack and realize that even with my good looks, charm, humor, writing, walking three miles a day, friends and family support, and great inner strength that I will have dark days.

As much as I’ve wanted to be the funniest breast cancer patient ever who tap-danced through chemo, there will be times when I simply cannot do it all.

But dawn will come – right after the dark.

However, I would officially like to request that there be no dawn for any lingering cancer cells in my body. For them, only darkness. And lots of it.

The book club, including baby Nora, modeling some of the hats and scarves coming my way.

One of the images permanently lodged in my brain is of leaving Maggie in Kansas City for her first job out of college. Let’s just say that she didn’t want us to go. And I didn’t want to leave her there.

We were sitting in Latteland in Kansas City, a coffee shop near where she lived. As the time for our leaving approached, Maggie and I avoided eye contact. Dick got up to go to the bathroom and when he returned, Maggie and I were both sobbing.

I didn’t cry like that when we took her to college or took her brother, Michael, to college. It didn’t seem as permanent as taking Maggie to Kansas City. Of course, going somewhere for a first job didn’t necessarily mean permanency, but it sure felt that way.

It was not easy that first year for Maggie in Kansas City, but then she began developing family. She re-met Mike, who she first knew as an eighth grader one weekend at a youth group event in Minneapolis. Even before she married Mike in 2008, she was enveloped into his wonderful family.

In the meantime, she was making friends, equally wonderful folks who became like family, as they proved Wednesday night. They went to Maggie’s house, where she was the hostess for a home jewelry party. It was one of those events where you invite your friends, provide snacks and wine and then they order stuff – but only if they want it.

Maggie was puzzled when many of the women – members of her book club – handed her pink bags as they arrived. She took the bags and put them down at first, not sure what she was supposed to do with them.

Soon she realized they were for her and discovered inside those bags were hats and scarves for me plus cards for her and some for me. I have never met most of these women, but they had reached out to me via my wonderful daughter. And they had reached out to Maggie via me.

They have also organized to walk for Pinky Pie in the American Cancer Society’s 2009 Making Strides Against Breast Cancer of Kansas City event on October 24. They set up a Pinky Pie team at http://main.acsevents.org/site/TR?team_id=568792&fr_id=19873&pg=team

Maggie told me she was just overwhelmed in such a beautiful way. At that moment she was enveloped in love and support – as her group of friends and family have given her since my diagnosis and even before. I don’t know how to thank these women except to tell a story that I once heard from a friend who used to live in La Crosse.

There was an old man, who had spent his life as a migrant worker, picking whatever crop needed harvesting. He clearly had slowed down and was endanger of being thrown off a farm where he was picking peas.

Another worker came up and nudged the older man. “These are for you,” he said, handing him a hat full of peas.

“But how will I ever repay you?” the older man asked.

“You don’t. Just pick a hat of peas for someone else.”

How incredible is it that the story was about a hat of peas when I’m writing about the kindness of so many women towards me – and towards my daughter in the form of hats and scarves.

Thank you to all of you in the book group and elsewhere who have been so supportive to my family and me. Clearly, I can’t possibly pay back these women or the many others who have called, brought meals, sent pink items.

But let me assure you, I will fill many hats in my life and pass them on.

And, let me add, it really was OK leaving Maggie in Latteland back in 2003.

Did I really just type that? Me? Randall Jefferson? Running 26. 2 miles? Let’s get a little background information about this:

So I have been overweight my whole life. It got way out of control once I got to college and I couldnt turn down basically a buffet style meal every time I ate at the Caf. Most people hated it but I thought it was good. Then my brother got murdered at the end of my sophomore year. Looking back at the pictures from the funereal I wonder how I got so big. Its funny when you look at pictures and your like “I looked like that? Why didnt anyone lure me to a basement with unlimited amounts of S’mores Poptarts and milk, tie me up, cut me up and sell me to a starved nation?” Im sure I could of fed at least a 1000 people. So when he died, I was on my last leg. I knew he wouldnt want to see me like this so I began to change. Couple of my roommates were healthy guys and they got me started on eating right, I bought a bicycle and thought I was on my way. That lasted a few short months. Then I went to visit my brother’s grave summer of 2007. I had a long talk with him and figured if I am going to die, have someone else kill me. It was retarded for me to kill myself like this. When I got back home I really toughened up and stuck to it.

A year and a half later I’m down from 384-230. It was a long journey but I did it. What I hated the most though is came off fast but I hit a plateau hard. Ive been stagnate for over a year now. Seems I couldn’t get past 230. I even got up to 250 for awhile. I tried EVERYTHING in changing my diet and exercise. I tried the diet that got me to 230 to being with and nothing worked.

Around my birthday a friend of mine has just finished running a marathon. His G/F threw a surprise Congrats/BDay party for him and me. I started talking to him about the training he did and he was telling me about how he couldnt eat enough food to maintain weight while training for it. I was sold then, I will train and run a marathon. A former boss of minc then told me about Team N Training. They are a non-profit organization that supports the Leukemia and Lymphoma Society. They help you train for marathons and you raise money for them. I thought “hey, I could lose weight and help support research and support for blood cancers, sign me up”.

Team In Training (TNT) exists to find a cure for leukemia, lymphoma, Hodgkin’s disease and myeloma.  It also looks to improve the quality of life of patients and their families.  Every year blood cancers strike over 100,000 Americans, and claim more than 60,500 lives in the United States alone.  Leukemia is one of the leading causes of death in children between the ages of 1-15.  The good news is that the survival rate has risen from 4% in 1960 to 81% in the last decade.  This is in part due to the money that The Leukemia & Lymphoma Society has raised to aid researchers in their fight to find cures for this disease.

TNT is The Leukemia & Lymphoma Society’s largest fund-raising program, bringing in over $82 million dollars this past year alone. Each participant in the program pledges to raise a certain amount of money during the 4-5 months they train for their event.  I have set a personal goal to raise at least $2,500!  Of that amount, over 75% of every dollar spent will be used by the Society for research, patient services and education.

The money that I will raise for research is fulfilling, but the most important and inspirational part of my training is knowing that my hard work could make a difference in the lives of my Honored Teammates.  I am running in honor of Shannon Royce who has won the fight against lymphoma. Shannon was diagnosed with lymphoma in March of 2006. After 6 weeks of CT scans, PET scans, blood work, and chemotherapy from stage 1 lymphoma, the doctors found and removed the cancer from a tiny lump in her neck.

This precious individual is the reason I am committing myself to this goal.   With this inspiration how can I not fight my way to the finish line?  It is a chance to embody a glimmer of hope for those who are battling blood cancers and to remember those who have lost their battle.

All this training and work I’ve been doing with TNT has shed a new light for me. Its bigger then me, there is something else bigger then me. These people depend on me. Im not running for myself anymore, Im running for a cure. Im running to save and expand lives. Since training has begun I’ve only lost about 20 pounds. Im at 221 now and I was at 240 when it all started 5 months ago. I had an original goal of 215 from when I first started losing weight 2 years ago. I know I wont reach it in 18 days but it doesnt matter. Im not running for me anymore. Im running for others that cant run. This has been one the most fulfilling journey’s in my life. I have met very inspirational and influential people along the way and I couldn’t be more grateful of the experience I’ve encountered over the past months.

My donation page is up and running and the support I have got from friends and family has been truly phenomenal. Feel free to donate as no contribution is too small.

Now on PBS

I’m on the PBS Now program this weekend. As they say, check your local listings.

I was trying to decide today whether to write about the Packers football game last night, my pending hair loss or go straight for the shameless self-promotion.

Clearly, my shameless self won, which could be a song to the tune of Hank Williams’ “Your Cheating Heart.” (I’ve been quoting a lot of songs in my blog this week so I couldn’t resist.)

The promotion is for my appearance (with others) on Now, the Public Broadcasting System (PBS) program that looks at issues in depth. Depending on where you live, it will be on Friday evening, Saturday or Sunday.

In La Crosse, Wisconsin, where I live, it will be on at 9 a.m. Sunday, which happens to be my birthday. Some of you will see it before me if it comes on Friday or Saturday where you live.

The issue is the subject of Advance directives, which used to be called living wills. The idea is that if anything should happen to any of us and we cannot speak for ourselves, we have something in writing that describes the kind of medical care we would want.  Or at least we have expressed it to our family or health care agent.

Some of us may want absolutely everything done that could be done if there is even the tiniest glimmer of hope.

I personally don’t want to live on machines indefinitely in the hope that somehow, somewhere, I might be pulled back to live. My brain is very important to me.

This is how I described it in a previous blog entry, The Life Panel & Me, “Frankly, I don’t want anyone wiping my tush indefinitely if I can’t eventually return to that fun activity myself. That measure of quality of life is very important to me.”

Some have questioned how wiping my tush could be considered a fun activity, but the point is I don’t want to have people gathering around a body that does not work any longer and where there is no mind. We aren’t there yet, but I want people around me go on with their lives. Have fun (with or without toilet paper).

Without that information given to my family, my doctors might have no choice but to continue on and on and on. Please don’t do that.

The reason Now came to La Crosse of all places is that we unwittingly became the “birth place” of the “death panel” misrepresentation.

What happened is that both medical centers in La Crosse have worked very hard to encourage adults to have advance directives. We have been so successful, that local medical leaders encouraged reimbursement for these professional services to be included in the health care reform bill.

See the Washington Post article about La Crosse

http://www.washingtonpost.com/wp-dyn/content/article/2009/09/03/AR2009090303833.html

I firmly believe some folks with malice in their hearts called this important activity a death panel simply to kill the entire health care reform movement. They suggested the government wanted to kill off Grandma, etc.

An advance directive is anything but that.

With my husband, who is my health care “agent,” I went through the process of creating a more advanced advance directive with questions that pertained to my particularly medical conditions.

Maria Hinahosa, the show’s senior correspondent, interviewed us the next day. She wanted to know if I felt I had appeared at a death panel. I said it was anything but a death panel. It was a “life panel.”

The process allowed me to express my values, what is important to me, etc. Nobody told me what to say or feel. I am not a grandma, but I did not feel anyone was trying to kill me off.

She also asked me how I felt to be facing my death. I said I can’t think that and I don’t think that way. I have to believe I’m gong through treatment for a very positive reason – be a 20 or 30 or 40 year breast cancer survivor.

But the truth is we are all facing our death, we just don’t know when it will be.

And I’m hoping people who really think this is a death panel don’t call me up and yell at me on Sunday.

As I said, it airs in La Crosse on my birthday, and I intend to celebrate every single birthday I get. As we all should.

Move over, Godfather of Soul, today Paul Simon and I are buds, not to mention Joe Cocker, Nina Simone (and company), the Black-Eye Peas, and Morris Alberts. And then there’s Maria.

James Brown and his song, I Feel Good, helped me yesterday to decide whether I was feeling good or well, a grammatical issue of importance only in my head yesterday. I went with feeling good as the grammatical way I learned to describe my state of being versus well, meaning the way I touch things.

But clearly, I have far more choices than good or well, which dawned on me on my morning walk as I sang a line or two (or half a line from)  Paul Simon’s Feeling Groovy, actually titled the Fifty Ninth Street Bridge Song:

Hello lampost
Whatcha knowin?
I’ve come to watch your flowers growin’
Ain’tcha got no rhymes for me?
Doo Bee Doo Doo,
Feelin’ groovy____________

Got no deeds to do
No promises to keep
I’m dappled and drowsy and ready to sleep
Let the morningtime drop all its petals on me…
Life, I love you,
All is groovy____________________

And then there’s ‘60s rocker Joe Cocker singing Feel Alright:

Seems I’ve got to have a change of scene
Cause everynight I have the strangest dreams
Inprisoned by the way it could have been
Legt here on my own or so it seems
I’ve got to leave before I start to scream
Someone locked the door and turned the key
Feeling alright
Im not feeling good myself
Feeling alright
I don’t have to feel alright
I’m feeling good myself

Anthony Newley and Leslie Bricusse wrote I’m Feeling Good, for the 1965 musical The Roar of the Greasepaint—the Smell of the Crowd. It since has been covered by many, including Nina Simone, Sammy Davis Jr., Eels, Michael Bublé, The Pussycat Dolls, My Brightest Diamond, George Michael, Joe Bonamassa, John Barrowman, Adam Lambert, John Coltrane, NoureddineAzhar, Muse, Calle Stuborn, Aṣa, and David Hasselhoff:

Stars when you shine
You know how I feel
Scent of the pine
You know how I feel
Oh freedom is mine
And I know how I feel
It’s a new dawn
It’s a new day
It’s a new life
For me

And I’m feeling good
I’m feeling good
I feel so good

The Black Eyed Peas recorded, “I gotta Feeling:

I gotta feeling that tonight’s gonna be a good night
That tonight’s gonna be a good night
That tonight’s gonna be a good, good night

I’m going to pass on the Jay-Z “Feelin It’ rap. I don’t mean to be culturally insensitive, but it’s just not quite what I’m feeling.

And speaking of Feelings, here’s the Morris Alberts song, with my hope that just reading some of the words won’t be too much for you or me:

Feelings, nothing more than feelings,
trying to forget my feelings of love.
Teardrops rolling down on my face,
trying to forget my feelings of love.

Feelings, for all my life I’ll feel it.
I wish I’ve never met you, girl; you’ll never come again.

And with my hair ready to fall out this week if it is on schedule, I just want to add one more song From West Side Story

I feel pretty,
Oh, so pretty,
I feel pretty and witty and bright!
And I pity
Any girl who isn’t me tonight.

What’s your song? What should be mine?

Our buddy, Purell

I’m picturing the Chicago Board of Trade, that huge madhouse of a room, where commodities traders yell their buys and sells amid flying paper.

In this case, I imagine shouts for hog, er swine, er H1N1 “futures” with many traders competing for thousand pound hunks of hog. In my imagination, traders immediately follow those buys and sells with shouts for Purell “futures.”

In this year of swine – H1N1 – flu, the big winner is Purell (and I know it’s not really sold as a commodity in Chicago).

Purell is that hand sanitizer made by Johnson & Johnson that has become synonymous with fighting swine flu. Stores, offices, clinics, hospitals and schools have invested a fortune in Purell, putting dispensers throughout their buildings.

Never leave home without it, we are told, and use sanitizing wipes when you enter the grocery store to wipe down the grocery cart. Some people have even suggested we don’t shake hands this season. Or quickly pull out the bottle of Purell after you do. How friendly that would be.

There are generic versions of hand sanitizer, but the common jargon for the stuff is “Purell,” much like Kleenex is the common term for the tissues that we run for when our noses run.

How crazy should we be this season?  With a lowered immune system because of chemo, I can get a little paranoid, looking around to see if anyone is coughing or sneezing around me. I want to avoid sick people.

My nose was running the other night, which prompted me to wonder if during the night I should rush to the bathroom to wash my hands every time I blow my nose. Or should I keep Purell by my bedside? What a restful night.

Friday was my nadir blood test – the idea is to learn how low my white cells, red cells and platelets dropped after chemo.

So while I was talking to the nurse drawing my blood, I asked how paranoid I should be about germs, including whether I needed good hand washing in the middle of the night. Mitch kindly responded that they were my own germs and I can’t re-infect myself.

Duh.

I’ve discovered common sense is a commodity that is greatly needed while being treated for cancer. Unfortunately, I don’t always have a ton of common sense so I will continue to ask many “duh” questions, not that the person answering would have say that.

Years ago when my youngest was going into kindergarten and I was going on the PTA board, we heard a speaker from the state Parent Teacher Association. She talked about the benefits of the organization, including the PTA’s Common Sense Program, an educational curricula for elementary school kids.

I actually turned to my friend Dorothy in the midst of the presentation and asked in all sincerity, “Did I miss common sense?”

Dorothy paused, trying to decide how to put it.

“Yes, Sue,” she said. “You missed common sense.”

I could not stop laughing for the rest of the meeting.

My missing common sense was very, very true. To ask that question only confirmed it.

Perhaps, it’s a commodity I could buy on  the Chicago Board of Trade.

I am the least competitive person you know. If I were in a room with 100 people, 98 of them would be more competitive than me. The other would be my friend, Julie, who is even more uncompetitive than me in everything, especially Scrabble.

Dr. Lowenstein's little device

Not.

It’s not polite to say so, but I am really competitive. I can give two examples, both of which are pretty funny stories.

Last night I attended the Mind/Body Skills Group at the Franciscan Skemp Cancer Center. We learn meditation, breathing and biofeedback techniques to calm our raging minds and body as we battle cancer.

Now many of you are already laughing at the idea of me doing meditation or biofeedback. You have every right to do so. If you are not laughing, you don’t know me.

But, hey, I’m giving it a try and everyone involved – eight women with breast cancer and two women leading the group – are wonderful people. They are kind and caring and  folks going through difficult times with humor. Still, I’m trying to be on my best behavior.

They gave us this hand device called Dr. Lowenstein’s Stress Thermometer, also called the Thermister, to monitor our progress. We are supposed to learn to relax in minutes and this device also can double as a stress test and a lie detector.

We attached the sensor to a finger and then repeated messages to ourselves to calm our inner souls:

• My arms are heavy. I am at peace.
• My hands are warm. I am at peace.
• My breathing is calm and relaxed. I am at peace.
• My abdomen radiates warmth. I am at peace.
• My forehead is pleasantly cool. I am at peace.

There’s more to it than that. But the idea is that our temperature would rise on the Thermister – indicating we are more relaxed and in control of our bodies.

Afterward, we went around the room and everyone told how they felt and how their temperature had gone up by three to ten degrees. Marti, one of the leaders, said, “Great. Everyone’s temperature has gone up.”

Wait, they hadn’t gotten to me. I was the last one around the circle. I announced that I am a remedial student, that my temperature had gone down not up. I then explained my competitive nature and  that I was thinking during the exercise how I wanted to be the best at raising my temperature and everyone laughed.

The other story made me think of Roger Bannister, the first man to break the four-minute mile in 1954.  I have this wonderful device called the Nike Plus iPod, which records my distance walking, pace, time and calories burned. When I connect my iPod to my Mac, it sends the information to the Nike Plus website, which automatically creates charts about my progress, etc.

On Tuesday, I had been explaining to a friend how inspirational it was to keep me moving.

Sir Roger Bannister - the less than 4-minute mile versus my 74-minute mile

The Nike Plus is very cool because you can have competitions between friends for all kinds of things and write little “trash talk” notes to each other. There are also challenges between runners in different states and organizations, even Mac users versus PC users. The goal is to get people up and moving.

A teacher at a middle school in La Crosse got me going on this and I’m sure it is because of the competitive nature of the thing. She has created fun challenges and tried to encourage her students to participate, not to mention various adults. And let me assure you, I don’t take walks without my iPod because I want full credit.

I’m certainly not as fast as I was before chemo, but the point is to just do it.

Tuesday, I went for a walk at the mall with my friend, Sue. We had a great time talking and walking. Walking is a big part of my coping and I want to appear strong all the time.

What makes this story is I forgot to turn my iPod off. So when I logged into the site later I realized I had just posted a 2.65-mile walk that took me three hours, 16 minutes and 37 seconds. Instead of a 16 or 17-minute mile, I had a 74-minute mile.

Naturally, with my Dr. Lowenstein’s lie detector, I can’t lie about my great walk. And as usual, my 74-minute mile is a story.

I think that mark is an accomplishment that even the great Sir Roger Bannister could not duplicate at age 80 today.

So I am officially challenging everyone I know to try and beat my 74-minute mile. Go for 75 or 76-minute mile. It won’t wear you out one bit.

Pink Solidarity

In the midst of teaching my life writing class Tuesday night, I checked my Blackberry, as I do way too often.  On it was this email message from my friend, Jill, from Kansas:

Hey Sue-

I just wanted to tell you that I’ve taken the concept of embracing pink to a whole new level. I am actually sporting one pink eye today. Some may say that getting pink eye is taking it a little too far, but I will do everything I can to show my support!

How cool is that. Of course, I had a smart aleck response, which I’ll include at the end of this post. I truly believe in a solid, funny ending, although I suppose not everyone finds me amusing. (There’s no accounting for taste.)

I was thinking about writing about the pink solidarity that I have been receiving when I was scooping cat litter Tuesday (wearing gloves; and I’ll check with my doctor if I should be doing this at all).

No, the cats have not begun issuing pink poop; something I don’t want anyone to do, human nor beast.

But my daughter Maggie and I had been to T.J. Maxx on Saturday on our latest pink hunt. Pink clothing and other items jump out at us, especially Maggie who feels she can support me via her wardrobe when she is not in town.

This hunt reminds me of when I would buy my son, Matt, a Star Wars guy for every IV and bone marrow biopsy. I was driven in the early 1980s to find every single Star Wars action figure, and then meant going from store to store. But that was my therapy. Did I mention driven?

Had all those Star Wars figures still been in their packages, I’d have all the money I needed to pay for cancer treatment. But they were for Matt to play with.

Ever since I was diagnosed with breast cancer, I’ve been telling the story of my mom calling me her Little Pinky Pie – hence the name of the blog is Pinky Pie. I never liked pink as a kid after I was over pinked, but I’ve been embracing my pink side with a whole lot of help from friends and family.

I am Big Pinky Pie, as a result of the diagnosis. Today I remembered that we had referred to Maggie at one point as Pinky Pie Junior (no relation to breast cancer). I also remembered that I had said when she was born that no daughter of mine would be dressed in pink. I was against such stereotypes until I started dressing her in a lot of pink. She looked really cute.

Anyway, I have received in the mail and in person so many pink things that have truly made me laugh. I gathered them together today for a photo and while they are all photogenic, I know I left some out. But I’m grateful for all the pink support in it’s many forms, including the pink fluoride rinse bottle for kids.

Back to the cat litter: one item that Maggie and I didn’t buy on Saturday was a small pink broom for each of us. While not expensive, we just decided that was a tad over the top. However, as I was scooping cat litter I thought just handy that broom might have been…

Now back to Jill and her pink eye. It was a nice effort to show support, but really, Jill, only one pink eye?

And you call that Pink Pride?

Recently I wrote about how being married improves outcomes for those with cancer. Spouses make a difference! (See the post)

What I also knew was that the improvement for people with cancer comes at a cost to the spouse. The additional stress, extra workload and role of caring all have the potential to adversely affect the health of those around the person with cancer. It would seem likely that the greatest effect would be on those closest – the spouses – though this depends on many factors.

Research has recently been carried out in this area, and it shows that there is an increase in healthcare needs and psychiatric diagnoses (mental health issues) amongst those who have a spouse with cancer. According to the researchers, this effect is greatest in male spouses. Perhaps this would indicate that the support structure of friends and family, which is more common amongst women, can alleviate the issues to some extent.

The study was limited in scope to those issues for which medical help was sought, and I would suspect that there would be a larger underlying issue of health issues experienced by spouses for which medical help has not been accessed. The researchers also recognise that there is a need for further study to ascertain ‘how to support the partner in the most effective way’. Families Facing Cancer will welcome such research, and the implementation of its findings.

Ref: ‘Influence on the Health of the Partner Affected by Tumor Disease in the Wife or Husband Based on a Population-Based Register Study of Cancer in Sweden’ – Katarina Sjövall, Bo Attner, Thor Lithman, Dennis Noreen, Barbro Gunnars, Bibbi Thorné and Håkan Olsson.

Can you see my blog on the WordPress home page?

Lying in the same day surgery area waiting to be taken to surgery to get my port implanted for administering chemotherapy, drawing blood, etc., I was fiddling with my Blackberry. Yes, I’m that addicted to the idea of getting email at my fingertips no matter where I was. Besides, the surgery was running a bit late.

I had already written for the day – pre-scheduled a piece that I called, the Cowardly Lion & Me. It was all about my fear of chemotherapy – mainly nausea and related body function. You may fill in the blank for whatever term you use for that body function.

Anyway, I received an email from the editor of WordPress, by blog site, that said, “Congrats! Your post ( http://shessel.wordpress.com/2009/09/23/the-cowardly-lion-me/ ) has just been promoted to the homepage of WordPress.com. Keep up the good work! Thanks a million,

The WordPress.com Team”

Wow! To say the least. I’ve had about 500 more visits yesterday than usual.

Well, all went well with getting the port and my first dose of chemotherapy. My nurse was thrilled to get one of my little pink noses and to wear it out to show off to the other team members. I think they will be fighting over who gets me next time.

What I really liked is they told me that “getting sick one time is one time too many.” I was to call the oncologist on call if that happens and my medications would be changed.

I did. I threw up last night and the oncologist changed my anti-nausea drug to the generic version of Zofram, or what I call zofriend.

Now all this might have been triggered by my taking a pain pill without food in my stomach. But it was quite a day yesterday so I might have gotten sick any way.

My good friend and nurse midwife happened to call last night when I started sweating and felt nauseated. She came over and helped me with breathing and put cold wash clothes on my head and neck. Those Lamaze breathing exercises did not result in a baby – other than the one had 29 years ago that day.

Yes, that helped but still what went down earlier came back up and I called the oncologist, who called in the new prescription.

I really wanted to handle chemo as well as I recovered from the surgery. Within a week I was walking three miles a day and decided that I wanted to walk more than three miles each day so I could “beat 3,” my cancer stage.

This morning when my husband came down stairs and found me on the couch, he asked me how I was. I said, “Well, I didn’t finish my three mile walk. Do you want to know how short I was?”

“Three miles?” he asked.

“That would be it.”

It is my hope to get out and walk tree times around the block later today or tomorrow.

I must say chemotherapy is not all it’s cracked up to me. And, its not cracked up to be much. As my buddy, Kermit the Frog, would sing, “It’s not easy being green.”

Oh, he has other wisdom as well that I’ve stolen from sites listening Kermit quotes:

• “Time’s fun when you’re having flies.”
• “Well, you know, it’s interesting being 50, … You start to reflect on your life. And you look back over the years at everything you’ve ever done. And, with age, middle age, comes wisdom. But I have to say that I’m not sure that 50 for me is the same as 50 in people years.
• “Here’s some simple advice: Always be yourself. Never take yourself too seriously. And beware of advice from experts, pigs, and members of Parliament.”

The Parliament reference is appropriate as I have been watching “Upstairs Downstairs” DVDs, the old BBC program on public television in the 1970s. The “master of the house” was a member of Parliament. I always thought the downstairs folks were a lot more interesting anyway.

The Cowardly Lion statuette and the medal from my costume

Years ago when I was writing my first history book I interviewed a man who as a boy had been operated on by the original Dr. Gundersen, founder of Gundersen Clinic in La Crosse.

Charles was a scared 6-year-old boy, but the venerable Dr. Adolf Gundersen was a man who took charge of his operating room.

“Courage boy,” he said as he slapped the ether mask on the boy.

And that was that. You could say the boy had courage – administered by the surgeon who had built his reputation in the early 20th century on successful appendectomies at a time when they were very dangerous.

I write this because many cancer patients, including myself, are accused of being “courageous.” I beg to differ.

With apologies to Janis Joplin who made famous the song, Me and Bobby McGee, it’s NOT “Freedom’s just another word for nothin’ left to lose.” Instead, it should be “Courage’s just another word for everything left to lose.”

We do what we do because we have no choice. Or, we have choices but none are very good.

Of course, it’s the unknown that is most scary. Franklin Roosevelt may have said, we have “nothing to fear but fear itself.” But for me, I have nothing to fear but chemotherapy itself.

For me, the scariest part of treatment is not losing my breasts but chemo, which I begin today. It’s not the hair loss, although I suspect it is going to be more traumatic that I’m letting myself admit.

What I worry about is nausea and throwing up and just feeling downright crummy.  I can joke through many things, but not nausea.

But they tell me they give good drugs; really good drugs (prescription). Still, there must be a reason for the bad rap that chemotherapy gets.

And, I will have eight intensive chemo sessions, two weeks apart. I need and want to keep working and walking, not to mention continuing this blog and maintaining my sense of humor. Am I expecting too much of myself? Maybe. Probably.  Hopefully, not.

Thinking about this whole courage thing I remembered that a couple years ago a bunch of us dressed up as the characters from the Wizard of Oz at the La Crosse Symphony. And of all things, I was the Cowardly Lion.

After the Wizard was debunked and admitted he is not a “very bad man,” but a “very bad wizard,” Dorothy and her friends still want what they came for, including courage for the Cowardly Lion, a heart for the Tin Man, a brain for the Scarecrow, and a return to home for Dorothy.

The wizard tells the lion that, “You are under the unfortunate delusion that simply because you run away from danger, you have no courage.  You’re confusing courage with wisdom.  Back where I come from, we have men who are called heroes.  Once a year, they take their fortitude out of mothballs and parade it down the main street of the city.  And they have no more courage than you have.  But! They have one thing that you haven’t got! A medal!”

I think I paid a few bucks extra to get a medal with my costume, something I remembered whe I was talking about courage with my friend, Jill. I realized courage would be a good topic for the blog, especially on the day that I begin chemo.

Then over the weekend, another friend, Colleen, brought me this statuette of the Cowardly Lion, on which she added this message: “Read what my medal says: Courage. Ain’t it the truth? Ain’t it the truth?”

Colleen thought it could be something to take with me to chemo. It is and the coincidence was amazing.

So what I’m trying to say is that it’s not that folks like me with cancer are any more courageous than anyone else.  We’re just doing what we have to do to survive.

Please.

(P.S.: and this is a terrible segue, but happy birthday, Maggie. She noted my starting chemo on her birthday is the first step to ensure I’ll be around for many more birthdays of hers. Beautiful thought. Love … )

Wait, Wait Don't Tell Me Panel

On my morning walk, I often listen on my iPod to a podcast of Wait, Wait Don’t Tell me, a hilarious public radio program out of Chicago.

It is so funny that I walk around smiling and laughing out loud. That is a very good thing. I’ve even written to Wait, Wait telling them they are curing my cancer, but I haven’t heard back from the show. Clearly, they figured they shouldn’t encourage this an odd woman who walks around her community laughing and smiling. Maybe, all they would have said to me was,  “Wait, wait, don’t tell me.”

Anyway, I was listening to a compilation program that really perked my ears this morning. During the program, the host talked about a study that said one day women will be able to power iPods and other small electronics by jiggling their breasts. Actually, there would be a bra that harnesses that movement into energy.

A stunned comedian and panelist Paula Poundstone responded, “Some day high school boys will leer at a girl and say, ‘She can power Inagodavida. See that girl over there? She can’t even get through Twinkle, Twinkle.’”

Of course, my response was, now, you tell me. That would have been a reason for the lumpectomy, or what is also known as “breast conservation surgery.”  Knowing that I could have preserved my breasts and saved the planet at the same time might have led to a different surgery decision.

Nah.

By the way, today is my son’s 22nd birthday and what young man wouldn’t want his mother to link her breasts (or lack of) with his birthday celebration? (I am a wicked woman.) But Happy Birthday, Michael. (I told him this and he laughed.)

But back to Wait, Wait, they also have a game each week they call “Bluff the Listener.” This person must identify the real story from three equally improbable. If the listener picks the real one, he or she gets announcer Carl Kassel to record his or her answering machine message.

One of those games asked a listener to choose between three new “adorable holiday characters” designed to “spread a particular brand of holiday cheer.”  I’ll save my favorite for last:

1. The American Coalition for Clean Coal Electricity unveiled a new holiday icon, Frosty the Coal Man. This national effort was designed to roll out a campaign for “clean coal,” which many say is an oxymoron. In this spot, the animated chunks of coal sing:

Frosty the Coal Man, is a jolly happy soul.
He’s abundant here in America and he helps our economy roll.
Frosty the Coal Man, is getting cleaner every day.
He’s affordable and adorable and helps workers keep their pay.

There must have been some magic in clean coal technology,
For when they looked for pollutants there was nearly none to see.

2. General Motors supposedly introduced a character called Sparky the Car Maker, who was a big CEO explaining the peril of the automobile industry to “little ears.” Sparky the Car Maker’s Christmas flew to the North Pole to ask the Christmas elves for a $25 billion loan. But the Elves, “who had no Christmas spirit, sent Sparky away.” Sparky was so sad because he knew the economy of the whole world depended on his company. So he drove back in his “big, big car” and agreed to settle for $15 billion for the company and “only a dollar for me.”

3. This one and my favorite had an augmented Vixen the Reindeer serving as the spokes-reindeer for a new holiday campaign to prevent bad boob jobs.” Supposedly an animated Vixen in a red bikini is represents a California association of certified plastic surgeons to promote positive plastic surgery. “Every December husbands and boy friends buy bargain basement breast augmentation procedures for the women in their lives,” the association president supposedly said. “…We wanted to educate them in a festive way.”

Despite my amusement at Vixen, the correct story was Frosty the Coal Man. And you can actually see this on YouTube at: http://www.youtube.com/watch?v=n5DR1oyr4g8

You probably didn't know coal can sing ...

Both of these stories made me laugh about my breasts or lack of. But hey, cancer is too funny not to laugh.

And did I mention happy birthday to Michael?

I ran into a woman at a retirement tea Thursday, who said when she saw me, ”No babies in the nursery.”

A bit later, she added, “I’m sorry you’ve joined the club. Now you’re president.”

Both of those statements require a bit of explanation.  First, she used to be head of nursing at a hospital about 45 miles from La Crosse and I was interviewing her for a La Crosse Tribune story about small community hospitals. My mind is clearly more vacant than hers but as I remember it, she was showing me around the hospital, telling me how vital it was especially for women in labor. They might not make it to La Crosse on a winter day. That especially was true before the curving highway was straightened.

I listened intently to her that day and either said or wrote in the story, “No babies in the nursery.” This woman of great humor never forgot it. If it ended up in the newspaper, it might have been a tad uncomfortable for her in that previous role. Sorry, Karen.

But we also talked about breast cancer and she is something like a 15-year survivor. Once again, and it was only Thursday, but I can’t remember the number of years she told me it has been since she was diagnosed. I should have remembered, but you know I’ll soon have what is called “chemo brain,” which means things may be foggy for a long time. I think I was just practicing my fogginess. You can’t start too soon.

It was when she learned I had breast cancer and was about to start chemotherapy that she said, “I’m sorry you’ve joined the club. Now you’re president.”

It’s true no one wants to join this club – but to be president? Wow! I’ve never been president of anything, and my role as vice president of my fourth grade class did not turn out so well. I’m hoping my presidency of this club turns out much, much better.

The truth is women with breast cancer come out of the woodwork when you are diagnosed. To hear 10 year, 15th year, 17 year, 22 year and even 30 plus year survivors is really inspiring and comforting. Donna, who might be described as a cousin once removed if I can figure out that cousin thing, wrote me to tell me she is 26 years since diagnosis. ” I was diagnosed stage 3 at diagnosis and was found quite by accident during a check-up.  It was Inflamatory Breast Cancer and my prognosis was apparently 8 months (although no one told me at the time).  I had 6 months of chemo, 6 weeks of radiation, mastectomy and 6 more months of chemo  ( a year to remember).

Yesterday when I had my follow up appointment with the surgeon, I was given a “lifetime” prescription for – how else could I put it –  a bra with fake boobs. So I said to the nurse, “That’ll be good for 30 or 40 years?” She looked at me and said, “fifty.”  I’m not sure I want to be 106 years old, but that would be something to have survived 50 years.

Another friend told me about a t-shirt she saw. It said, “Of course they’re not real. My real ones tried to kill me.”

And a third friend said, I need to have my chemo outfit, or what she called my battle armor. Where can I get a suit of armor? And wouldn’t that be a tad awkward in the OR when the surgeon tries to implant my port for delivery of said chemotherapy?

I’ve been exploring t-shirts on line in the hopes I can get one here before chemo on Wednesday – it’s iffy. But I’ve found sites with funny shirts – I’m afraid I just can’t get to rough and nasty. I have settled on one that I’ll order today. Stay tuned to see what I pink, er pick.

Picture me in this outfit dancing.

Doing the Scan-Scan

Today I begin a two-day tour of heart imaging – what I’m calling the scan-scan dance, but without the frilly short skirts and legs kicking of those world famous scan-scan dancers.

It’s not that my heart is not healthy, but an ultrasound view of the heart is part of the protocol before chemotherapy. I’m not that worried about my heart considering I am walking three-plus miles just about every day with great enthusiasm.

When my breast cancer was diagnosed, I asked if there were any clinical research trials available. As a medical writer I’ve written about research studies that improve care for future patients. I like that.

The arms of most studies are “double blind” (meaning neither you nor the health care providers) know which group of patients you are in. In a cancer treatment study they are not testing which cures breast cancer: chemotherapy or chicken noodle soup. No, they compare the best practice in treatment to the best practice in treatment with a modification.

For the record, I think I’d prefer the chicken soup cure for cancer, but that doesn’t appear to be an option.

In my case, the research study is not double blind and everyone who participates is in the same group. We all get the standard practice of an echocardiogram (ultrasound of the heart) before chemotherapy plus an MRI of the  heart. They want to know which provides the best information. The scans will be repeated after I finish chemotherapy, balder but wiser and healthier, I hope.

The study’s goal is to identify which is better in predicting heart changes  related to Adriamycin. That is one tough drug whose official role is to slow or stop the growth of cancer cells (an excellent idea in my mind.) Adriamycin can also damage the heart but you have to weigh the risks and benefits.

I want to say right now: go cancer drugs. I’m cheering for you. I’ll have four sessions of Adriamycin plus cytoxan, starting September 23, and then another four sessions of other chemotherapy drugs. I say go chemotherapy drugs – and go drugs to keep me from feeling nauseated. I wish these drugs well in kicking the cancer’s microscopic tush.

Wait: what’s this? The dancers are can-can instead of scan-scan? No wonder they gave me a patient gown to wear instead of those red frilly skirts when I had my echo today.

Emily Litella, AKA Gilda Radner, knew how to tell it like it wasn't.

But Gilda Radner, who portrayed Emily Litella on Saturday Night Live, would be proud. As a guest commentator on Weekend Update, Emily expressed outrage about such issues as “endangered feces” only to be told the issues was endangered species. She also was concerned that anyone would oppose “violins in America” only to be interrupted and told the issue was violence in America.

Her response when corrected? “Never mind.”

So this blog post is part tribute to the inspiring Gilda, who was said to keep her sense of humor through her ovarian cancer. That very funny lady died in 1989. You gotta love her spirit.

Dancer and actor Patrick Swayze died yesterday after a 20-month battle with pancreatic cancer. The Texas native was 57.

In the last series “Beast”, he portrayed an undercover FBI agent.  During the filming of this series, he was undergoing intensive treatment but he missed work only one day.  When interviewed by Barbara Walters, he said, “One thing I’m not going to do is chase staying alive. You spend so much time chasing staying alive, you won’t live.”

As a cancer survivor, I also recall the time when I underwent treatment. I kept up with my daily exercise routines. This not only created for me a semblance of normalcy and sanity, it also helped me distinguish “trying to stay alive” and “living in the present”.

This is not to say that I was in denial of the reality of cancer. Indeed the “C” word strikes fear in our hearts and minds. It causes us to shift focus, to lose our vision for life, and to reduce our purpose to mere survival.

During treatment and in the years afterward, I refused to see myself as a victim of an illness. In fact, I rarely identify myself as a cancer survivor. I continue to see myself as a human being, created by God for a purpose. My daily goal was not to “chase staying alive”, as Patrick Swayze called it. My daily goal was to live out the purpose and the destiny I was created for.

Living under the shadow of the menacing illness, I had to daily practice emotional coaching on myself so fear did not become my boss. Every year when I return for my annual mammogram, fear invariably comes to the forefront. This is the time when I practice, once again, emotional coaching on myself in order to stay focused on my purpose, my destiny, and my mission in life.

When I practice emotional coaching on myself, I take these steps:

• I listen to my emotions and I name them. This could be fear, anxiety, anger, or depression. Naming the emotions I feel allows me to deal with them specifically.
• Recall the purpose I am created for. Mentally I bring my calling to the forefront of my thought processes.
• I imagine a glass jar filled with a large rock that takes up almost all of the space. Then I imagine little pebbles around the large rock. Then I imagine myself filling the jar with sand in the spaces left.
• During the day, I repeatedly recall the image of the glass jar with the large rock. Every time I bring up this image, I write my purpose on that large rock.
• I audibly proclaim to myself my purpose in life: “To empower women and men to grow personally, intellectually, and spiritually.”
• I pray: “So help me, God.”