STRIDING FOR A CURE!

STRIDING FOR A CURE!

Dear Family and Friends,

I want to thank you for your love and support during my battle with Stage 3 breast cancer.

It was tough- chemo, surgery and radiation. My nine months of treatment is behind me, but the after effects of my breast cancer will be with me forever. However, because of the progress that has been made in treating this disease, my chance of survival has been greatly increased!

I am hopeful that my individual battle is over. But I want to continue the battle for others who face this disease. There isn’t much that I can do by myself, but I can raise funds for research, treatment, and, hopefully, finding a cure. You all know how active I like to be, so I have chosen to participate in the Avon Two Day Breast Cancer Walk in Charlotte, North Carolina. With my neighbor and wonderful friend, Sharon, we have formed our own small battle team, Striding For A Cure.

Together we’ll spend the next few months training, fund-raising, and preparing for the event.   For instance, just last Saturday, we walked 9 miles for training.  In October, the one year anniversary of my diagnosis, we will walk 39 miles over two days time; doing a marathon distance of 26.2 miles the first day, and 13.1 miles the second day.

I’m asking for your donation to this cause. The money raised goes to the Avon Foundation Breast Cancer Crusade, whose mission is to fund access to care and finding a cure. They provide funding to organizations all over the country in five areas: medical research, clinical care, support services, educational and advocacy seminars, and community-based, non-profit early detection breast health programs. Sharon and I are paying our own way for transportation and hotel costs- 100% of your donation will be going to the Avon Foundation.

Please help to support our efforts and the breast cancer cause by making a contribution. You can donate right online at http://tinyurl.com/2o9q9w – simply click on the link under my online photo!

Whatever you can give will help, but I hope you will give as much as you can! I truly appreciate your support and will keep you posted on my progress.

My love, and thanks,

Jan Clare

All the news…

How did little old me end up on the National news? Serendipity- pure serendipity. Apparently the Midwest correspondent, Barbara Pinto, wanted a support group to respond to the new study from Dr. David Spiegel which said that support groups did not prolong a breast cancer patient’s life. Y-me of Illinois gave her the information about my support group in Barrington, IL. Barbara then wanted to interview women who had metastatic cancer, who had recently done treatment. Well, I fit the bill. Myself and another woman from my group, Carolyn, who is stage 4. (Actually, I really think that the news people wanted just stage 4 patients- but they asked for metastatic cancer patients. I’m stage 3, but also metastatic because my cancer was in my lymph nodes. So they got me!)

Got to admit it, I enjoyed the whole process. And I have to laugh- they spent over an hour interviewing us at the hospital, ½ hour filming our group meeting, and then came out to my home to film and sound record me walking with another breast cancer survivor friend, Laura, (along with our darling dog, Zoe!). The filming went well- I felt comfortable, the film crew was friendly, and Zoe was a dream during our walk! All that time came down to about 30 seconds of talking from me. But at least I got some additional screen time – with the start of the newscast showing my walk with Laura and Zoe, plus I was front and center in some of the group meeting shots. Poor Carolyn- all that filming and the only thing they showed was her saying something about her cancer not being found on mammogram.

And I also have to admit that I kind of played it- I knew darn well that wearing a hat would make me stand out. I don’t really need it anymore, but it would make me different. Yeah, after 9 months of treatment and the awful things I’ve been through, I enjoyed my TV moment.

But you all know, I know you all must realize that I wish that I was not qualified for that TV moment! I would rather have been blissfully watching that TV newscast as an ordinary viewer, untouched by breast cancer. I take what’s been given me but I can’t help wishing things were different.

My 30 seconds on TV

Positive Outlook May Not Prolong Life in Cancer Fight

Researcher Finds Cancer Support Groups May Not Offer Anything Beyond Emotional Support

By BARBARA PINTO

July 23, 2007 —

On the third Thursday of every month, a group of women gather at Advocate Good Shepherd Hospital in Barrington, Ill. They sip tea out of china cups, nibble on cookies and share some of their worst moments.

“I’m Elaine, and I’m just starting to deal with cancer,” says a white-haired woman whose husband has come along for support at the session sponsored by the national organization Y-Me.

She asks about the side effects of the chemotherapy her doctor has prescribed. Nearly everyone at this table can offer an answer.

To her left, Carol, a perky woman with a broad smile, talks about her diagnosis of breast cancer — a relatively rare form that did not show up on her mammogram.

“I’m stage four,” she says.” I’m living with breast cancer and don’t think I’ll ever be out of treatment.”

Support groups like this one are at the core of modern breast cancer care, helping women cope with a life-changing diagnosis. But beyond offering information and psychological support, new research questions how much talking about the disease and focusing on a positive outlook help someone beat the disease.

Landmark Study Reversed

Eighteen years ago, Dr. David Spiegel of Stanford University Medical Center conducted a groundbreaking study that found that women with metastatic breast cancer who shared their problems and listened to those of others thought more positively about their own chances of survival and lived an average of 18 months longer than those who didn’t get group support.

That study virtually jump-started the support-group movement and helped generate talk of a mind-body connection for cancer treatment.

“I think there has evolved over this past decade the sense that you’ve got to think positive to beat cancer,” said Jimmie Holland, a psychiatrist at Memorial Sloan Kettering Cancer Center.

Others had been unable to duplicate Spiegel’s findings. But recently Spiegel repeated his original study — this time with surprising results. He found group therapy and positive thinking appeared not to be significant factors in a patient’s life span.

“The take-home message from this study is that certainly group therapy helps people live better,” Spiegel said. “It does not provide significant evidence that it helps them live longer.”

Reaction from those in the cancer care community include some who say these latest findings raise doubts about the mind-body connection — the idea that a good result is only possible with a positive attitude.

And Holland said that attitude can be hard to come by for a patient dealing with cancer treatments.

“I’ve had one patient who tells me that if one more person tells me to be positive I’m going to punch them in the nose. ‘I’ve had enough of this positive business. I don’t feel good today. Enough already,'” Holland explained.

For Jan Kuba, who underwent chemotherapy, radiation and radical surgery, the idea that her attitude would affect the outcome presented unwelcome pressure.

“I think, “Oh, those few times that I felt a little bit down, they’re the ones that are going to kill me,” Kuba said.

“They really make it seem like if you’re not positive, then you’re failing. And that’s just not true,” she said. “You’re going to go through the down times and there’s no way you’re not going to feel depressed. You’ve just got to struggle to get back up.”

Fellow group member Carol Parmer, who, for the past two years has lived with breast cancer that has spread to her bones, said fellow members of the Y-Me support group have been her lifeline.

“It can be very isolating, very lonely in a way, ’cause there are people who tend to want to pull away. With the support group, there’s a sisterhood that exists, ” she said.

The new study did show that while women in support groups may not live longer, they do suffer less pain and are better able to cope with their illness. Jan Kuba found another important benefit.

“I’m not in the support group to increase my life. I have no way of knowing how long my life will be,” Kuba said. “The only think I know is it gave me hope.”

Copyright © 2007 ABC News Internet Ventures

Radiating future health

Radiation certainly put a road block up for my blogging. Don’t ask me why. Being truthful, it was not as hard on my body as chemo. It didn’t hurt like the surgery. So why did I just stop writing about the experience?

Maybe because it was an every day reminder of the disease? It drags on a person- going every single day. Perhaps it was just that it was another lingering layer of chemo brain- too much to think about, it was so tough to gather my thoughts. I didn’t completely understood but it just felt like something was wrong.

I just know that I hated radiation. A big cold impersonal room with a whirring robot machine.

 

A “road map” for the radiation planes drawn on your skin. Little blue dots tattooed on your skin to facilitate getting into position.

 

 

The techs were nice enough, but from necessity they had to be mostly business. You are laid on a slab (no other word for it)- fitting your head and arms into a specially shaped “pillow” that was as hard as rock. Then just lay there, don’t move, as you are shifted, prodded, and pulled to the coordinates needed. They’re talking numbers that I will never understand. Gaze at the hole in the ceiling from which a red laser beams down across your face. There were more laser beams coming from each side wall, their tracks seemed to follow along my scars.

Once I was in position, I was left alone. That drove it home. There you are in a room too dangerous for “ordinary” folk- those who are not diseased. The machine clicked and whirred, moving from one plane to another as the radiation beam is carefully aimed to follow the doctor’s prescribed angles. I could see my breast-less chest reflected in the cover lens of the machine. And now I wonder if that was a large part of why I hated radiation so much? Seeing that distorted reflection every day? It was hard to avoid- unless you closed your eyes for the whole time.

Six and a half weeks, and I was done. Done in more ways then one- my skin was crispy, swollen and red .

But it was all over. And now, a month later, my skin is recovering. That outward sign of healing, it makes me feel that inner healing is also progressing. I’m a changed woman. A breast cancer sister, a survivor, but I’m also going to be well. I strive for a healthy future.

End coming up

Why haven’t I been able to discuss my radiation treatment?  I don’t know.  Haven’t a clue about why I’m basically blocked about this.  I’m down to my last 6 treatments.  Two this week and four more next week and that’s it.  I’ll be all done.  Done, hopefully forever, with breast cancer treatments. 

I’ve hated this process.   I’ve done my research, faced each decision, gone through every moment required for the best possible outcome without a whole lot of angst.   But that doesn’t mean I haven’t hated this.   And maybe I’ve been hating so long, focusing so much on my battle, that I’m having a hard time looking beyond this “war”.

I’ve blitzkrieged this disease.  Chemo, which made me ill.  Surgery, which has (no way to get around it) disfigured me.  Radiation, which has burned me from the inside out.   It’s almost done now.  According to the medical community, I’m going to move from being a patient to being a survivor.  Yet I don’t really think that way.  I’m not yet a survivor.  More like a “waiter”.  Waiting for each month, each year that gets me farther and farther from my diagnosis.   Waiting to be sure it’s over. 

And waiting, still, to write about radiation. 

Pause Game

My sons call it addiction- I call it an escape.   Or maybe a distraction?  Well, why not- I would think that people dealing with serious illness need distractions.   Either way, too many hours have been spent lately playing on-line Sudoku.  ‘Numbers  1-9,  up, down, across, what fits in that box?, waste gigantic amounts of time’ Sudoku.  That’s right- I’ve been escaping with a numbers game.  Seems fitting in a way.  What have I been doing for the last 7 months except playing the numbers?  Everything, from the dose dense chemo to surgery to radiation to my current low fat eating plan to exercise with dead numb feet, everything is designed to better my numbers.  To increase my odds of long term survival.   And I was tired of playing that game.  Tired of the constant appointments, information, procedures, treatments, travel, and just plain thinking that has to go into this breast cancer numbers game.

So I was playing a different game instead.  All numbers, with a clear solution if you work hard enough at it.  And, the most wonderful part of all, it has a Pause Game!   A click of one little tab and the board is covered up, the timer is stopped and you can walk away.  Isn’t that wonderful, the ability to just walk away?    Things too tough on the Sudoko board?  Click, PAUSE and walk away.  Come back later, try again and, if you really want to, even dump the board to start again.

I’d love to dump the breast cancer board, I don’t like the numbers, but I’m a realist at heart.  This is one game that I’m stuck with to the end.  The treatment squares on this board are almost full, and, even if there is no clear solution, the timer that is life will continue to count out the seconds and hours.   I’ve been attempting to escape that real life, hard to solve, situation with just some old fashion time wasting.  I think it’s what I needed for the last few weeks.  I don’t feel guilty- even if I wasted some precious life, we all do that every day, don’t we?   It was one way of dealing with what was painful to me at the time.  I feel mentally stronger now.

Resume Game 

Mother’s Day, after cancer

Okay, so I played the cancer card for Mother’s Day. “Guys, I’m going to be walking in the Y-Me Race to Empower. Want to join me?” Poor sons and hubby. As my youngest said, “It’s Mother’s Day and its cancer. You stacked the deck, Mom!”

But it was amazing, and I loved my sons and husband for being there. For being willing to get up at 6 am and drive downtown to Chicago’s Lakefront, for mingling in a sea of mostly pink wearing women.

 

 

It was a beautiful day with perfect weather and there were over 30,000 people participating!

 

 There was a choice of 3 things to do- 1 or 3 mile walk or 5K run. My husband chose to run with a friend, but my two boys walked the 3 mile with me. Well, what they said was a 3 miler, but it was actually more like 4.5 miles. We walked up Columbus Drive to Lower Wacker, then down to the Lakefront path.

 

 

 

 Apparently they decided to have the walkers go down the lakefront all the way to the museum campus and then come back to Grant Park- that was much longer then 3 miles!As a marathoner who has done many hours of training, I know my mileage. As a chemo survivor who still suffers from burning dead feet, I hated every step of that additional 1.5 miles.

 

 

 

Down another tired path

I’m sorry. It’s not that I’m so busy. I’m not. It’s not that I don’t have things to say. I do. Actually, I have too much to say. I’ve been writing stuff down about all kinds of things, from trying to move past illness to exercising with dead feet. From living with the triple negative to my hair growing back. But I’m just not able to finish anything.

 

I’m tired of all this. This breast cancer juggernaut that has dominated my life for over 6 months now. I know I have to live with it, but I just want a break. Go away for a little while “BC”, will ya? Let me wake up just for one day without my arm and chest hurting. Give me one day where my feet don’t burn, where I don’t feel like I’m walking around on Legos with sandpaper between my toes.

 

I’m not depressed. I’m not down. I’m just tired. I wake up, I move and there it is, the reminder. Ugh. Let me get that out of my system again. Ugh.

 

I’ve now met my fourth doctor in my breast cancer fight. My new radiation oncologist, Dr. Ruffer. He’s managed with one very heartfelt action to really impress me. He walked into our appointment, sat down and said, “Let me see if I have your story straight,” then proceeded to outline the entire journey I’ve been on since I found my lump. Every treatment, every symptom, every procedure, everything, he got right! Do you know how rare that is? Most doctors come in and say, “Now tell me what’s been happening” forcing you, the patient, to once again perform, to disgorge the awful story again while hoping you remember everything, that you don’t forget something important.

 

I was knocked out! Dr Ruffer told me that he used to go with his ill father to doctor’s appointments and he hated when doctors did that to them. He said he wanted to tell the doctors, “Read the damn charts, will you!” So he makes sure that he always does his homework, that he knows as much as he can. Thank you, thank you, Dr Ruffer!

 

I’m set up for 28-30 radiation treatments. Every week day for 6 weeks. Every frigging day at 3:45 pm, starting next Monday. My right chest/breast area and my right armpit area will all be radiated. This is a one shot deal. It will decrease my changes for a recurrence but the areas can only be done this one time. After this, if the cancer comes back, there is no way to radiate again. Small sections of the total area will be done each day until finished.

 

I had to go in for what is called at radiation simulation. One of the things that must be done is make sure that the patient is always in the same position. I was arranged on what looked like a thin blue pillow with my arms above my head. The pillow was filled with a strange foam. Once I was “comfortable” (that does not really happen with me due to my shoulder surgery), then air was removed, pumped out, which hardens the foam, giving the techs a support cradle that I will lay on for each treatment. Dr. Ruffer came in and marked my chest and under arm to map out the areas that need radiation. The radiation technician then attached “wires” to the marked areas which created a grid. They then used a special X-ray machine called a simulator to check everything out. The process is called simulation because the treatment is being “simulated,” not really given. The x-rays taken will allow the doctor’s team to figure out how deep to radiate, the dose of radiation that is needed, how to avoid or minimize the dose to the normal surrounding tissues.etc. I really don’t want to know all this, but part of being a good patient means being an involved patient. So I do my research on radiation and I learn.

 

This Friday I’ll be tattooed. Three, maybe four small blue dots will take the place of the black pen markings from the doctor. Meanwhile, I have small adhesive dots covering the marks to protect them. “Don’t, whatever you do, scrub them off!”

 

No, I won’t. But what I really long to do is scrub everything away, rinse ever bit of breast cancer out of my system.

Yes, I’m okay!

I have no idea how it happened, but I lost a blog post! I swear, I wrote a post last Friday and I thought it posted, but apparently it’s gone now! Sorry to everyone who has been worried.

Yes, I’m fine- the scan was clear. Or as the doctor said, “There was nothing in the brain, it was clear.” Along with my relief, I just had to giggle- it made me sound so empty-headed. Okay, now NO comments please! I’m well aware that that may just be the truth. Especially since I’m still pondering what I did with that missing blog post!

Maybe it’s better that it’s gone. I got rather maudlin- all about how I was grateful that the scan was clear, but also had to face the fact that this was my life now. That every cough, ache and headache has to be at least slightly considered from the viewpoint that it could be a recurrence, how hard it was to think that way. Blah, blah, blah, blah, blah. Really, it wasn’t worth the typing time.

Life is always a battle- it always has been, it always will be. It’s just a matter of living, loving and laughing, along with the battle. I just have to work more on the laughing.

That’s it for today. There is more going on with having to start radiation soon, going back to work, working with my PCP to handle the high blood pressure and headaches. But, that’s just another series of battles for which I am fully armed.

Meanwhile it’s currently all clear in my brain- and that ‘s what matters today.

I’ve been to the promised land!

Well, kind of anyway. 2 weeks ago Scott and I took advantage of an offer from his cousin of a free house to use in Fort Meyers, Fla. We had been waiting to see how my recovery went before committing to going. It wasn’t the best, but I figured I could be healing in Florida just as easily as Illinois, so after getting some doctor’s appointments out of the way or switched around, I told Scott, “let’s do it” and off we went. It was rather sudden once we decided. I meant to post something before we left, but, of course, I forgot.

I had not been cleared to fly, so poor Scott had to drive there and back. It was not the most comfortable journey for me as anything the least bit bumpy or twisty caused the seatbelt to press against tender areas. I padded myself with pillows and gritted my teeth. I don’t like long distance driving even at the best of times, and this certainly did not qualify for that label. Still we were able to stop and see his parents on the way down and my aunt on the way back, plus spent a lot of nice time with Scott’s brother and sister in law, who have a lot at a an RV park in the same area.

It was nice to relax in the warmth, even if I did hate the actual travel. We walked the beach and collected shells, went to a wild life refuge, the Edison & Ford summer mansions, had Easter Dinner with the RV park residents, shopped and ate as much seafood as we could.

Ironically, just as I would have been grateful for having hairless legs and underarms for Florida appropriate clothing, the hair started growing back with a vengeance. Everywhere- including my chinney-chin-chin. Acutally, more then normal. I even seemed to be getting a fine but thick covering of light hair all over my lower face. This is apparently not unusual after chemo- I’ve been assured that it is like the fine hair that some babies are born with that they later lose. I hope so, I’m not used to being so hirsute. I lost the last of my eyebrows on the day I had my surgery, but now they were growing back so dark and bushy that I could have modeled for the Geico cavemen.

The hair on my head is growing back in as a sort of combo dark and gray. Still very short, but it is also very, very soft at this point- another surprise as I would have expected it to be bristly like a beard. The color freaks me out- I’m used to seeing myself as a dyed redhead. So I find myself wearing my wig more and more.

It’s been 6 months since my diagnosis. I find myself very weary of being ill- and not as close to being done as I would like. I start physical therapy this week for the swelling under my arm that just won’t go away. I meet with my radiation oncologist (oh joy, another doctor) at the end of the week to set up a radiation schedule- that’s at least another month and a half of daily appointments.

But the worst is that I’ve been having daily headaches. The kind that get more painful if you sneeze or cough- but in the back of my head, not towards the front like you would get with with sinuses. One of the long term side effects of my chemo is raised blood pressure and I think that’s what’s happening here. My medical oncologist thinks so as well, but says he always has to be concerned when he hears a patient is having headaches- and apparently those symptoms can also mean mets to the brain. So I’m also scheduled for a brain MRI this Thursday. So I’d appreciate more prayers and positive thoughts.