Say Something

September 8, 2011

(by Frances Barrie) Yesterday I met my new oncologist, Wendy Chen, who replaced Dr. Anderson after she moved to Arizona.  She was nice enough– a little high-strung with a really bizarre, cartoon like laugh–but nice. I suppose you have to be a little high-strung to work in the cancer industry, it seems these doctors have to fit in more and more patients on a daily basis and to do that you have to relay a lot of information in a short period of time– Information that is changing as fast as their patient list is growing.  I especially liked Dr. Chen because she told me that she wouldn’t force me to take Femera–a drug she knew from Anderson’s notes I guess–that I am opposed to taking.  She said I could try it and then get off it if I wanted, “No harm done,” HAHAHAHA(weird laugh). Anyway, I will see her again in 6 months.

While waiting at the check out desk to schedule my follow-up, I heard  another  doctor giving a list of instructions to a woman behind me in line:

“Friday you’ll come to the 10th floor for your first infusion, here’s where you go for your MUGA heart scan, fill these prescriptions by tomorrow and take them Friday morning before you come…..’

An all-too familiar shiver went up my spine as he rambled on.

Suddenly, here was that fine  line I walk, again, the one between leaving people to their own grief or getting involved. I struggle with this. Sometimes I keep to myself, wishing I had said something. In this case, the feeling of panic and fear emanating from behind my back was  so palpable that I reacted before I had time to convince myself to mind my own business.  And this time, I was glad I did.

I turned around to see a woman, older than me by maybe seven years with her husband.  Both looked like they had just witnessed a train wreck or walked through a haunted house.

“You’ll get through this.” I said, “Honestly, you are going to be ok.”

Her gratitude almost made her knees give out and I showed her to the chair.

“I’m so overwhelmed.” she said, shuffling through a pile of papers in her hand; white, purple, yellow copies of instructions, and prescriptions, consent forms and test results. Her husband sat on the other side of her, rustling through his own papers, alternately looking over at me like I actually had the answer to the question I know he wanted to ask, “Am I going to lose her?”

I told her things I had learned:

“The chemo will be hard at first but they give you lots of drugs to counteract the side-effects.”

“Wint-O-Green mints really helped me.”

“Three days after infusion you will start to feel a little better.”

“Take the Ativan.”

She thankfully accepted my comfort as I rubbed her arm and put my hand on her shoulder–gestures that usually are reserved for only your closest friends and relatives.

“Will I  be able to walk out of here after the chemo treatment?” she asked me.

“Oh definitely,” I said, “You will be tired and your head will be fuzzy from the chemo and the drugs but you will be fine.  Really.”

I learned that she had been treated for uterine cancer through surgery and was doing well enough to not need chemo or radiation. But after 5 weeks she was in great pain– the cancer returned as a large tumor in her upper abdomen.

“Five weeks!, ” She said, “I was walking on air, had a new lease on life.  I couldn’t stop smiling, and then bang, just like that…”

She enjoyed those 5 weeks immensely, not knowing what lay around the corner or the next battle she was going to have to face.  This confirmed what I believe stronger every day–There is no sense in ruining today by worrying what might happen tomorrow. My cancer could come back at anytime–it’s why they want me to take these medications–to avoid the recurrence that could be deadly.  But it does me no good to worry about that until it happens. Deal with each hurdle as they come, don’t sit around overwhelming yourself with what might happen. I would much rather squeeze as much life out of today like my friend in the doctor’s office did.  If she’d known the cancer would return, how unhappy and anxiety-ridden those 5 weeks would have been.  Instead she has wonderful happy memories of a time when she totally enjoyed her new life–and those memories might just give her enough strength to get her through her next hurdle.

“I’m so sorry, “I said, “But it’s great that you had those weeks, right? Imagine if you didn’t ever get to be that happy?…and now you will just get through this–you just will.”

I don’t know this woman nor do I know for sure that she will get through this.  But so often all it takes is some ones’ faith in your strength and ability to muddle through–sometimes it’s enough to hold onto when you think you can’t do it any more.

“I am not giving up,” she said, looking straight into my eyes.

When I left the office she squeezed my hand and thanked me.

“I am so glad you said something, ” she kept saying, “So glad you said something…”.

Me too.


Fearless(by kickedbyanangel)

April 7, 2011

When I was growing up, my mother was ridiculously afraid of lightning . Whenever a storm threatened our family my mom would unplug all the appliances, make us wear sneakers and rubber bands around our wrists and sit in the middle of the room until it passed.  We were not allowed to take showers or, God forbid, talk on the phone because everyone knew that Mrs. so-and-so was electrocuted right there in her kitchen one day while she talked to her daughter on the telephone and Mr. so-and-so was killed while lathering up in the privacy of his own bathroom.

Whether these horrible occurances actually happened didn’t matter– we never investigated further, taking my mother’s word for it.  Unlike the kids today who question the validity of everything we say to them, we tended to take our parents’ word as gospel. Just like my lovely friend Clare who still believes that lightning can come up through the toilet because her father said so. Actually, that may be true.

So now as a mom, I have spent the last 17 years following in my mother’s footsteps and passing on my phobia’s about lightning to my kids.  Around my house, when it thunders and lightnings, everyone knows to look for me as I might be crouched under a table, or running to my basement. My kids have seen me get out of bed in the middle of the night when the lightning flickered like a strobe light around the house and sit for hours in the middle of the upstairs hallway –the only place without windows. They’ve seen me have panic attacks and stay sweating in my car with the windows rolled up tight, refusing to go across the parking lot into the store until the storm had passed. They’d witnessed my utter breakdown when I was stuck with them in a metal canoe, in the dead center of a lake when a storm rolled in faster than I could paddle to the opposite shore–my own personal idea of hell.

But yesterday, when it thundered outside my kitchen window and the dog slunk upstairs with her tail between her legs to shiver under my bed, my oldest son looked at me in mocking expectation.

“Are you freaking out?” he asked

“Nope.”

“Really?” he said with a disbelieving cocked eye-brow.

“Lightning doesn’t scare me anymore,” I said. “Neither do bees, or the dark, or anything much. Having cancer took care of that.”

“That’s cool,” he said, and went back to his texting.

Sometimes we don’t realize that things have changed within ourselves until we say them out loud. I hadn’t even realized that my fears had subsided until I voiced it.  Being told you have cancer, then being told it’s aggressive, then getting through surgeries and chemo–Well, hell, if I can do that, what exactly can lightning or a bee sting or the dark do to me?

It was well known to anyone that knows me that I was afraid of lightning, but my other fear lingered quietly in my mind–my fear of death.  That isn’t one, most people talk about. My fear of death and dying always stayed low, crouched behind my couch, waiting to jump out and say ‘boo’. And although that fear still lingers in some aspect, it seems to have shifted a bit since my diagnosis.  It seems now, that more than I fear death as it exists, I fear ‘not living’.

My fear these days is that I will not squeeze as much life out of each day as is possible. Living without purpose and gusto doesn’t make much sense to me anymore.  Lightning will strike, bees will sting, the dark exists,death will happen, there is not a lot I can do about those things. But life on the other hand–there is an awful lot I can do about that.

 


The Elephant in My Room

December 8, 2010

I didn’t know Elizabeth Edwards personally. I know that she was courageous and brave and that she wrote books just like I hope to do some day.  I didn’t pay too much attention to the drama with her political husband as it seemed like Tabloid fodder– a  steroidal version of local town gossip.  But I did pay attention to her cancer diagnosis.  Diagnosed with Breast Cancer in 2004; recurrence in 2007; death in 2010.  This one hits close to home.

Every time I hear of someone passing from cancer I hold my breath while I ask ,”what kind?”. It is difficult to explain what happens inside me when I find out the diagnosis was breast cancer. Those who have had breast cancer understand. Those who don’t, I hope you never understand.

Yesterday as my husband was standing at the sink rinsing out coffee cups, I said to him,

“Did you hear about Eizabeth Edwards?”

“Who?” he said. “Oh right.  She died didn’t she?”

That’s when the elephant came out of the back room where he has been eating peanuts and staying out of everyone’s way. His giant ears perked up when he heard the words ‘breast cancer’, slowly he pushed himself off his back legs and lumbered into the kitchen where he sat–not so gracefully–between my husband and me.

No one mentions it because it’s silly really. I have beat the cancer, right?  No sense even comparing. But Elizabeth beat it too–so she thought, and 3 years later it returned. The elephant looked right at me when he heard that one.  My 3 year diagnosis anniversary is this Friday, we both know that. Then he takes out his tiny calculator, if I go the same way then I am looking at 3 more years from this point to live.  I will be 50.

While the elephant and I stared wide eyed at each other in silent panic, my husband continued to wash out cups. I am not sure he even noticed him sitting there as he turned and walked away.

This part of having cancer is not getting easier. This feeling of my mortality so close to the touch.  Last month I threw my hip out and was in some intense pain.  I was afraid that I had a stress fracture which would impede my running for a long time but I was more afraid that the cancer had returned and was settled in my hip bone.  When I mentioned that possibility to a friend, they looked at me like I was crazy.”Why would you think that?” they said.

“Why wouldn’t I?”

That’s what happened to Elizabeth and that’s one of the prime sites that breast cancer will metastasize to. They found a spot on her rib, her lung and her hip.  And once the cancer travels, well the outlook is grim.

I went in for an x-ray and discovered my hip problem was a tendon/muscle pull and although it’s still killing me, I am thanking God that it wasn’t what I suspected.

In a couple of days the elephant will return to the back room where he lives a quiet existence. I would like to release him and let him find somewhere else to live but he seems comfortable here for now.  Most of my friends and family don’t notice him at all when they visit.  I am the only one who knows he’s there–especially when it’s quiet in the house and there is no one around and I am left alone with my thoughts and fears.


I Want So Much to Live

September 21, 2010

I was lucky enough to see this new documentary at The Boston Film Festival this week called “I Want So Much to LIve”.  It is a beautifully done film about the invention of Herceptin.  This short film  highlighted the young scientists of Genentech who made it their mission and passion to get this drug perfected and approved.  It was these young kids in California who figured out that something was odd in the breast cancer world; they wanted to know why after treatment some survived and some didn’t.  They figured out that 20% of all breast cancers were fed by the her2 protein and then went about finding an antibody for it.

As I was diagnosed to be her2/neu positive in 2007– 4 years after Herceptin was approved– I was lucky enough to receive this drug.  The story touches on the women who were not so lucky, who wrote letters pleading with the drug companies to let them have this new drug that was available. The film explained the clinical trial process and how a drug gets pushed through the FDA–giving us both sides to the story and showing how there was no real ‘bad guy’ because everyone was working toward the same goal–finding a safe and effective drug against breast cancer.

What struck me most about this documentary was the unbelievable commitment of these scientists to prove that Herceptin was worth the companies time, money and effort.  They knew in their hearts that this was an important step in helping to cure cancer, and they would not take ‘no’ for an answer.  It also amazed me that it was only in 2003 that this drug finally became approved, and that had it not, I would be in a very different situation right now.

You should definitely see this film if it comes to any of your cities. It made me feel like all the walks, runs,and bike rides we do to raise money for research against all cancers is actually doing something.

Here is the link to the film’s website index.html


Another Year, Another Mammogram

July 16, 2010

By Frances Barrie

I know that the yearly mammogram  you get after you are finished with all treatments for breast cancer are supposed to cause anxiety and stress but  that wasn’t the case for me yesterday.   I admit I was quite stressed getting to my appointment, because we are now dealing with 2 broken vehicles and I had to ask a friend for a ride into Boston, but once I was in the building I was calm, cool, and collected.  So calm in fact, I fell asleep in the chair waiting for my results.  Head back, mouth open, deep snooze until I heard my name from far, far, away, “Frances Kolenik”.  My head snapped forward as I wiped drool off my chin and looked around at the other woman in their starched blue and white gowns, busy reading or worrying.  I wondered if they overtly stared at me while I slept or stole fleeting glimpses of my slumbering while thumbing through their magazines.  I’m sure they thought it was wildly inappropriate.

My mammogram was over quite quickly. Done in half the time it used to take. Since I have only one real breast, they only squash and flattten one side into their heineous machine of torture.  The nurse I had was exceptionally rough yesterday, handling me like a slab of meat. “Just slap that baby up on this counter…ya come on, up here, stand on your toes. That’s it, now stand like that while I screw this vice down on top of it..one…more…turn…there now don’t move, and hold your breath.”

Like I could breath if I wanted to.

But I was spared the agony of having to do this  on the other side because they don’t check the implanted side. So within minutes I was sent off to the waiting room with the other women to await my results, and in my case catch a few winks.   My results were normal.  This was good news but nothing I didn’t already know. See, it is not the other breast that concerns me.  I don’t expect to get breast cancer in my other side.  That would be a new cancer.  What actually causes me anxiety is that a cell from the cancer I already had somehow escaped the onslaught of  chemo and has attached itself elsewhere in my body.  The area surrounding my implant particularly worries me-but they don’t check that.  Nor have they done any other scans on me like they do for others that have had the same treatment.  I am still not quite sure why.

I did see Dr. Christian who ‘manually’ checked my chest and said it seemed fine.  I told him about a pain near the sight of the original cancer and he said he had no answer and that maybe it was a “ghost” pain–pain some people get in an area of the body that has been removed or amputated. I am not quite convinced that is true,  but  for now this answer will have to do.  I will bring it up again with my oncologist in August.

So as far as the year mammogram check, which some think is a big deal, I am not feeling that great sigh of relief.  I am happy to have a clean scan in my right breast but what would make me really happy is a PET scan that would show no evidence of cancer anywhere else.  This, again is something to take up with my oncologist.

The good news is this…a full year has passed since the end of my chemo and I am here, and feeling stronger than ever.  I certainly  don’t need a test to tell me that.

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The Fear of What Might Be

April 26, 2010

(By :Kicked by an Angel)

Last week, during our first day of  lounging on the warm sands of Myrtle Beach, my oldest son asked me why I hadn’t been in the ocean yet, knowing that usually I am the first one in. Even the coldest North Shore waters of Gloucester in June are not enough to stop me. I generally feel that if you are going to take the trouble to travel to the beach you HAVE to go in the water.  Otherwise you might as well stay in your backyard on a lounge chair.

“I’m not hot enough yet,” I said.

On the second day, he asked me again.

“What’s wrong with you?  Why aren’t you going into the water?” he said, shaking his wet head at me like a dog.

“Knock it off,” I said fending off his watery attack with my raised hand, “I just don’t feel like it.”

“Why?”

“Jelly Fish.” I said,thinking about how every other year when I took my morning run along the beach I would see their gelatinous bodies washed up on the shore every few feet knowing how much pain these beautiful creatures could inflict, their long sinewy tentacles poised for attack.

“Mom, I haven’t seen any Jelly Fish on the beach this year.”

“I know, neither have I,” I said, “But that doesn’t mean they aren’t IN the water.”

“So you mean to tell me,” he said, with all his 16-year-old wisdom, “That you are going to base your decision on  fear of what may be in the water?  Of what might be?”

“I guess so,” I said, and went back to reading my book.

I did eventually go in the water a few times over the week, but I didn’t linger–in and out– but I went in.  But Calvin’s words stuck with me, because isn’t  that what I have been doing over the past few years? Living my life in fear of what might happen?  My cancer is like those jelly fish.  A few years ago we saw it all with our eyes, the tumors ,the tests the results, as clear as those masses washed up on the sand. But now those masses are gone, there is no physical evidence anymore.  The cancer is gone.  But is it really?  It could easily be swimming in the currents of my blood stream, waiting to sting me again, translucent and beautiful, its tentacles trying desperately to spread out. Because of this possibility, of what might be,  I take a drug everyday, Tamoxifen, that I hate, that makes me fat and puts me into menopause and causes joint pain and can lead to uterine cancer– but I take it, just in case.

But these decisions on what medicine to take and how long to take them are also based on scientific tests, so they must be right. Right?  The decision to take medicine is not only based on what might be it is backed up by numbers and percentages and facts.  So I know that if I don’t take the Tamoxifen then there is a 40% increase in the likelihood of my cancer returning, and  I base my decision on that.  It’s  also the reason I agreed to taking Herceptin, the drug that messed up my heart, since my Her2/neu positive cancer needed that drug to remain at bay.  Unfortunately though, the doctors and the scientists just can’t seem to get this stuff right.

According to a study out last week in the New York Times, scientists are now discovering what all along I feared; the tests they do on tumors to see what their markers are (mine was Her2/neu positive and ER/positive) are now being considered untrustworthy.  This means that the drugs used to treat these particular types of cancers, which have many side effects, may be unnecessary.

HER2 tests, for instance, can give false-positives up to 20 percent of the time, wrongly telling women they need the drug when they do not. Five percent to 10 percent of the time the tests can falsely tell a woman that she should not take the drug, when she should.

“The science is still evolving,” Dr. Bloss said. “What was true last year may not be true this year.”

My original tests were done at a local hospital in Winchester.  When I decided to continue my treatment at Dana -Farber Cancer Institute in Boston, I asked on numerous occasions if they had re-tested my tumors to make sure they were Her2/Neu positive.  My oncologist and my breast surgeon said they had but I never felt like they actually did a re-test.  Answers were quick and vague and from their answers it seemed to me that they just looked over the results from Winchester Hospital.  This study shows that different hospitals test differently.  There is no standardized tests available.

The two large national studies of Herceptin for women with HER2 positive early-stage breast cancer were just starting in 2001 when Dr. Perez, of the Mayo Clinic, a principal investigator, had a moment of truth. Women were having HER2 tests at a variety of places — community hospitals, major medical centers, national labs. Dr. Perez decided to retest tumors in a central lab to confirm the results.

The outcome stunned her and her colleagues. Twenty percent of the first 119 women whose initial tests indicated their tumors had excess HER2 turned out not to have it on retesting.

“We all felt, ‘Oh boy, we have a problem,’ ” said Dr. Wolff, a study investigator. “This was huge.”

So the studies were modified to require central labs to retest all the tumors.

Yet the discordance remained — one-sixth of women told by local labs that they were HER2 positive were not on retesting.

I was also found to be ER positive. Which means my tumor was fed by estrogen.  For this reason, I take Tamoxifen for 5 years.  Again, this is based on what I assume is the initial testing done at Winchester Hospital.  The article states that there are discrepancies with those tests as well.

Like the HER2 tests, other molecular tests for breast cancer also have problems. Those tests, for estrogenreceptors on breast cancer cells, determine whether cancer will be thwarted by drugs that deprive tumorsof estrogen. They can be wrong at least 10 percent of the time. Some estrogen-depleting drugs, while generally safe, increase the risk ofosteoporosis and, depending on the drug, can also cause joint pain and increase risks of stroke and cancer of the uterine lining.

Estrogen receptor tests are a muddle, noted Dr. Edith Perez, a breast cancer specialist at the Mayo Clinic in Jacksonville, Fla. Quite a few tests are being used, but Dr. Perez could not ascertain exactly how many or how good they were in predicting whether a tumor would respond to estrogen-depleting drugs.

So guidelines were set up, but still they found discrepancies.

There are all sorts of reasons why different labs can get different results, said Dr. Mitch Dowsett of the Royal Marsden Hospital in London and a member of the United States committee that formulated HER2 testing guidelines.

In borderline cases, pathologists can disagree. Or stain can pool in areas where a tumor was crushed or damaged, making it look, to inexperienced eyes, like a positive stain.

Twelve years after Herceptin was approved for women with advanced breast cancer, “we’re still trying to refine the testing,” said Ms. Pellegrino of Genentech.

It is too late for me to do anything about the Herceptin.  If my testing was wrong and I took the Herceptin unnecessarily that I can not change that now.  I will caution any one reading this who is in the beginning stages of their cancer, though, to make sure you demand to be tested 3 or 4 times until they get it right.

As far as the Tamoxifen goes, I haven’t decided yet.  I could stop taking it now, I could dive into that water of faith and hope to swim for years without the recurring sting of cancer.  I will probably ask to be re-tested at some point but then it is up to me.  Do I base my decisions on fear of what might happen or do I trust in science and doctors who are now seeming to me to be quite baffled about how to handle cancer in all it’s forms? Or do I say the “hell with it”, throw off my towel and run head long into the waves, taking my fate into my own hands?  I would  very much like to stop living in fear of what might be, I believe there is a true freedom in that way of living and the only real way to find peace.

Click to read Full Article


Barbie Has Officially Left the Building

March 14, 2010

The second time I met Dr. Plastic, before my mastectomy, he  had a long red gash on his forehead. He laughed saying that he had forgotten to remove his glasses from the front of his shirt when he pulled it over his head and the glasses cut into his forehead.   This made Dr. Plastic a little more human to me.  Over the past two years under his care I have come to understand just how eccentric he is. My oncologist described him as a little crazy but a genius.  I am not sure I would go as far as to call him genius since he did pop my expander and also put in an implant one size too big–but one thing is certain, the man can sew human skin so as a scar is barely visible.

Yesterday, I lay in pre-op waiting for my final re-construction surgery, my husband, Mark, and best friend, Gina, were at my side. My IV was in place, I had met with 2 anesthesiologists –one great, the other looked like she’d been sampling a little too much of her own anesthesia, 3 nurses and an orderly. According to hospital protocol, every person that enters the patients curtained area must ask three questions 1) What is your name 2) What is your date of birth, and 3) What are you having done today.  I had no problem answering the first two, but as you all may now know about my aversion to certain words, I stumbled on number 3 every time.  “Frances Kolenik, 2.13.63, ummm….nipple reconstruction.” Nobody but me flinched at the word–I really need to grow up.

The last person I met with was Dr. Plastic himself. He stumbled into my area, his head covered in white spiky hair still moist from his recent shower.  I noted how much his hair had thinned in the two years I have been under his care. He had definitely aged through my cancer journey…I hoped that I hadn’t aged quite as rapidly as he.  The second thing I noticed was a red gash that ran down the length of his forehead.

“Are you kidding me?” I said.  Gina laughed out loud at this noticing it at the same time.

“Tell me you didn’t do it again.”

Dr. Plastic looked puzzled.

“Your forehead, the glasses? Again?”

“Oh now I am embarrased,” he said, touching the red line, “You remembered from last time? Well, what can I say, I was rushing?”

“This doesn’t bode too well, for me,” I said, thinking that stumbling and bumbling and rushing might cause my nipple to be placed somewhere around my bellybutton.

Dr. Plastic was insulted, “That’s ok, I am not doing the surgery, she is,” he pointed somewhere across the room to someone that was out of my sightline.

“NO!  Just kidding.  I want you to do it.”

“Ha, see?”  he said. “Don’t worry.”

I actually have no way of knowing if he actually did the surgery or handed it off like they do on Grey’s Anatomy to an intern in the OR.   Either way it’s fine.  Somehow I totally trust this bumbling, eccentric genius.  I trust him enough to sit there while he writes all over me in sharpie and draws the exact spot he will operate so I will be even with the other side.  When he steps back to look at me and measure the distance with his artists eye and then calls Gina over to get her opinion I realize that I have lost every semblance of modesty that might have been left over after childbirth.  My nipple has become public domain…as has my whole chest actually.

Gina noticed something else about Dr. Plastic. I don’t remember this because maybe they had already started the drugs, but according to Gina, Dr. Plastic tucked me back into bed and fixed my hair under the shower curtain they make you wear.  It must be this gentle, caring side of Dr. Plastic that makes him so good at what he does. I believe he really cares about his patients and wants them to be happy.  As a plastic surgeon, he is not dealing with life and death but instead deals with egos and peoples feelings of self-esteem which is so important after someone has lost a body part to cancer.  He understands the awkwardness and pain that accompanies plastic surgery, and that is why he is a genius — oh, and man can he sew up skin!

Compared to my other surgeries, this was a piece of cake. No drains or heavy pain medications, just a few stitches and feeling tired from the anesthesia. Dr. Plastic gave me the go-ahead to run by next Tuesday (which means I will run Monday). Thankfully I am coming to the end of this whole fiasco. My Barbie Boob is now history, leaving me only to meet with the tattoo lady, and  in then in  two weeks I will have my port removed.

Then, and only then, I will finally begin to put this all behind me. To those of you out there just beginning or in the middle of treatment and reconstruction please know that there will be a day that you can finally say –, “Ok–I am done!”.