Tag Archives: breast cancer survivor

Cancer is Dance. Here are the steps

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A Road Trip in Healing

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Ibrance Romance

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AS GOOD AS IT FEELS, LIFE’S ABOUT TO CHANGE AGAIN

An oversized brown box arrives on the front porch. Inside is a plastic bag. Inside that, is a small bottle, maybe three inches big. Inside that are 21 Ibrance capsules which will take me through the next month of this leg of my cancer treatment.

The bottle of pills cost $10,000 a month, so I imagine it doesn’t seem indulgent to the specialty pharmacy to send it out overnight in this oversized package. The plastic, resealable bag is thick. I can think of a million reusable ideas for it if it didn’t contain the ominous skull and cross bones and a warning that reads: Dangerous. Toxic. Chemotherapy drugs. Do not handle.

I wonder what my trash men will think of me. And I realize I now live in a toxic world, one where I can no longer recycle or repurpose. One where there’s no turning back.

According to my first pathology report five years ago, my cancer cell was an estrogen-hungry fool, making her easy to decimate. I agreed to an aggressive IV chemotherapy treatment that shrunk my tumors to mere slivers, and the surgery and radiation that followed erradicated them entirely. I endured baldness, bone pain, nausea and weakness that I thought I’d never recover from.  For my efforts, my doctors were sure I was cured, free of the pernicious cells.

AND THEN THERE WAS THE ONE THAT GOT AWAY

But it turned out, one survived. My onocologist would later explain that tumors are like jars of pebbles and the first pathology report told of a larger rock in the jar. What was left was a grain-like piece of sand. This cell didn’t eat much estrogen. She was very slow growing. I called her my Crack Whore cell, because it was amazing she existed, let alone thrived in the Country club setting that’s my body. My Muffy and Buffy cells were outraged that she’d gained admittance. They want her banished.

I agreed, of course. And so we sought to oust her with a combination of drugs. One, called Xgeva, fortified my bones, which is where she took residence, relegating her to a cardboard bed existence outside a barred –bone entrance. The other, called Faslodex, filed the edges off the estrogen the Crack Whore feeds off of so she couldn’t grasp them when they floated by her. The third, called Arimidex, leeched the estrogen out of my body, in an effort to starve the Crack Whore completely.

SO WE ROCKED HER WORLD

In the beginning, the new hostile environment worked. The Crack Whore stopped having babies and Muffy and Buffy filled in with their own children.

Then after about six months, the Crack Whore realized she didn’t need as much food, didn’t mind the cardboard bed and started pimping herself out again. Judging by the CT scans I had last month, she hasn’t given birth, but she’s likely pregnant along with her other Crack Whore offspring.

So last month, I started  a new approach. Nix the estrogen leeching drug and replace it with the Ibrance, a drug that blocks proteins the cancer cell needs to replicate. A Crack Whore cell tubal ligation of sorts.

THE MARRIAGE DILEMMA

I call it the Ibrance Romance. When I started taking the drug, it seemed so much better than anything else I’d been on. I was in love. Three weeks into it I crossed the matrimonial threshold and suddenly thought  to myself “What have I gotten myself into?”  Now I wonder if I can endure living with it the rest of my life or if I’ll scratch its eyes out.

While my doctor told me I shouldn’t experience any side effects from the Ibrance, he explained that the drug suppresses my bone marrow – that’s the place where red and white blood cells are made – so I will likely see my blood counts go down. I need to go in for tests to be sure they don’t go too low, in which case I’ll need to take a break from the drug or go off it completely. For that reason, I can only be on the drug for three weeks at a time, with a week off to give my body time to replenish the damaged bone marrow.

It’s a bit like going into Muffy and Buffy’s den and messing with their Netflix streaming. But knowing that Muffy and Buffy are the Country Club set, I kept them preoccupied with activities. I make lots of dates with friends – many who are in the same boat – to run, bike, swim, walk. Keep our endorphins up, the dopamine pumping, the serotonin flowing. For Muffy and Buffy, it’s a cocktail party and they didn’t miss NetFlix.

PARTY’S OVER

Then came the hangover. Searing pain in my bones that were rebuilding themselves, from a restless aching in my toes up through my long, leg bones to a burning in my rib cage and pounding in my head like I’d been hit with a baseball bat. I took a pain reliever, which didn’t much help.

I decided to respond to pain with pain, longer runs that inflame my hip flexors, cancelling out the bone pain, which works until I have to go to sleep.  And then, even that stops working.

The pain is so great, I call my doctor for an answer, something stronger to relieve the pain. And while I wait for him to return my call, I begin to cry. I cry because it hurts. I cry because I know I now live in a toxic world where I can’t recycle or repurpose and there’s no going back. I cry because my body has to work so hard to heal itself and there’s nothing I can do to change that. I cry because I know this is the tip of the iceberg, that I’m in the rabbit hole and down is the only way I can go.

I cry until I hear a knock at the door. I wipe my eyes, as I hear giggling and clinking glasses on the other side. It’s Muffy and Buffy.

“Cocktails anyone?” I hear them yell on the other side.

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Resiliency Training- What It’s Really Going to Take to Bounce back

A friend handed me a newspaper article offering eight tips on ways to develop resiliency. When I read them it hit a nerve. The tips were a bit trivial and didn’t go far enough, as far as I am concerned. After mulling it over for a few days, I went back and revised the list (which I’ve left in italics). Here (in boldface) is my take on what it takes to be resilient:
1. Build and maintain strong relationships….The truth is, your relationships are about to go through a hurricane. Those who have stood by you to this point may fall away. It may be because they haven’t addressed their own issues. It may be because they just haven’t experienced what you’re going through. Some you’ll need to detour from. Some you’ll need to drop entirely. To deal, you’re going to want to pull away and “tough it out.” But the lesson is, people are not always loving or loyal. Forgive them, which doesn’t mean they’re not assholes, just that you’re not going to dwell on it. Instead, put your time and energy into relationships that are working.
2. Do something every day that is meaningful….Sometimes life doesn’t give you the option to do this. Sometimes it requires long stays in hotel rooms or hospital rooms or inside court rooms. An easier task is if you need joy, do something for someone else. Make a child smile, hold the door for someone, pay for the person behind you in line in the coffee shop or at the toll booth. It will bring you out of whatever funk you’re in and make you realize the world is a bigger place with bigger problems than what you’re going through.
3. Learn from experience that feelings are fleeting and you’re not always going to feel this way. At times it was hard for me to look past the anger, sadness, betrayal, grief even depression I was experiencing. But somewhere deep inside was a voice that said “This too shall pass and the only way out is through.”
4. See change as an adventure….This can be really hard when change is pummeling you day in and day out and hope seems to have abandoned you. As difficult as it seems, make friends with your fear, regret, anger, grief. As Buddhist Thich Nhat Hanh says, invite it into your living room. Ask it to put up its feet, offer it a cup of tea. These difficult emotions are going to be with you for a while, so you might as well befriend them. As Pema Chodron says” How do you get comfortable with uncertainty? Get comfortable being uncomfortable.”
5. Take care of yourself with a healthy diet and exercise….Better advice: Be gentle with yourself and trust the bounce. A year after my sister’s death we experienced a brutal winter, encased in ice that made it impossible to get out and exercise. So instead I stayed home and made lots of chocolate chip cookies. Many of them I gave away to the police and public works guys who were putting in long hours removing the snow; to neighbors who had shown me kindnesses; to an attorney who represented me pro bono while my father’s angry ex-wife chased me through the legal system, filing frivolous motion after frivolous motion just to antagonize me. But I also ate a lot of them and in the process gained 10 pounds. Until that point, every year I had made a New Year’s resolution to lose 5 or 10 pounds. But it wasn’t until I was 20 pounds overweight that I was actually motivated to lose the weight. I joined Weight Watchers in March with the goal of not only losing, but keeping it off. A year later, not only have I kept it off, but I continue to lose – albeit slowly. My point is, I ate those cookies with wild abandoned, which is what I needed to get me through that desperate winter. And when I was ready – when I hit my bottom – I bounced back. I’d learned that I could trust that.
6. Be proactive. Decide what you want and formulate a plan to get it….Truth is, life doesn’t go as you plan and often it has its own agenda. I have reams and reams of goal lists, action steps, crossed-off to do lists and I am no closer to my goals than I was five years ago, not because I’m not taking steps, but life has had other plans for me. This step is great for those still living under the illusion that they’re in control of their lives, masters of their destiny. Resilience is accepting that life is 10% of what happens to you and 90% how you react to it. The rest, you just gotta let go of.
7. Keep a gratitude log and when you’re stuck go back and look through it…I am a huge proponent of gratitude lists. I have several gratitude notebooks, a journal I write in daily that I always end with five or six things I’m grateful for. I also have a “mindfulness” eating habit where just before a meal I thank all of the people who have brought it to me (farmers, truckers, the grocery store clerks, etc.) wishing them happiness and health. When I look back on these journals though, I find that most of the things I’ve been grateful for are gone. My father, my sister, my good health, a sunny day has given way to rain, etc. Therefore, I’d say gratitude will help get you through moments of intense pain or difficulty so it’s a good habit to cultivate. But it will also show you how fleeting life is, and therefore how important it is to recognize, in this moment, what’s going well because there’s a good chance it won’t be there in the next. The rest, though, you just have to let go.
8. If you don’t feel these tips are working see a mental health professional….My advice: No matter how bad things are, don’t lose your sense of humor. Even in tragedy there is absurdity. If you find you can’t laugh, definitely go see a mental health expert. Also, don’t be afraid to go on medication if you need it. You’d take cough medicine for bronchitis, antibiotics for an infection, the same for anti-depressants. There are some mild ones out there that help put a brick under your foundation when you can’t feel the ground under your feet. You don’t have to stay on them forever, but healing can only take place when you’re grounded.

Believe me, one of the greatest lessons in resiliency is knowing that you’re completely vulnerable and you’ll still find a way to make it through.

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The New Normal

This piece was written by Michelle Kaplan who went on to become a mom after her breast cancer treatment (Dear Cancer: You Can’t Have it All). I think it sums up beautifully what life is like in the “new normal.”

By Michelle J. Kaplan
July 5, 2006

Two years out from my breast cancer diagnosis and I have a different perspective on my life than I did being one year out. Last year I was filled with euphoria (BIG understatement) at being done with surgery, chemo, and radiation. I naively thought that I’m done and I am going to go back to the way things were minus one or two things that I resolved to do differently.

Yet, once that euphoria wore off, I realized that my heart, mind, and body would never be the same. That once you are diagnosed with a life-threatening illness it really is never over. Even after the treatments are done and people resume their old lives and want you to get back to your life, you know you can’t and you feel stuck. Stuck in a place where you yearn for some of the things and the innocence of the way they were before your diagnosis and other things totally different. Other survivors told me that feeling this way is normal. It’s called the “new” normal.

The new normal is knowing that you will never be cured.  That you are in remission and that you are still deciding on courses of treatment to prevent recurrence.  Deciding on medicine that your oncologist wants you to take that may or may not help you prevent getting cancer again, but while taking it makes you feel fuzzy, achy and sluggish.  Making big decisions on which treatment to do and constantly battling in your mind the quantity versus quality of life factor.

The new normal is being tired of going to the hospital you did your treatment in. It’s being resigned to the fact that you will continue to be poked and prodded during numerous checkups.  It’s being stuck with a needle for blood or to receive medicine that, as a needle-phobic, I will never get used to. It knows everyone who works at the hospital, from doctors, nurses, technicians and even the parking attendants. Each time you go back it makes you realize you are still a patient when all you want to do is store away the memories of the past few years and move on.

The new normal is when your body is still tired and weak and bloated from medication. It’s when you realize that you still don’t feel like your old self and are unsure as to when you will.  The body that wants to fit into my old jeans and gets upset and frustrated when you can’t.

The new normal is living with the fact that I will never be a biological mom since the chemo, the medicine to ensure I get all the cancer out of my body, ended that for me.  It’s realizing that life isn’t fair, that you aren’t going to get everything you want and feeling the pain of a dream dying.  You learn that there is a “cost” for everything and for me the trade-off for living is to do so without experiencing childbirth.

The new normal is seeing too much pain and suffering as you watch a good friend pass away from the same disease you had, but never got under control, and wondering why a beautiful, 40-year old woman died and you did not. It’s asking about friends you met in the chemo room that you haven’t seen for awhile and finding out that they didn’t make it.  It’s hearing about another person who got diagnosed and having your heart sink into your stomach as you think about the journey they are about to embark on and wishing that they didn’t have to go through it all.  It’s also talking to many, too many, women who are about to undergo treatment and helping them through their experience as best as you can without feeling helpless.

The new normal is being selfish with the one thing no one has enough of-time.  It’s being impatient with people who just “don’t get it” as they argue and are negative about things that really won’t matter 100 years from now.  It’s truly understanding the gift of goodbye to people who don’t support you and treat you with respect.  Instead you fill your life with people whom you love and care for.

The new normal has helped me rediscover who I am and what I am passionate about.  It has given me a better appreciation for the simple things in life like the hugs and kisses from my niece and nephews, completing a good run on the treadmill, playing tennis, cooking for family and friends, a thank you for a job well done from one of your colleagues, and just hanging out around the house.  You realize the blessing of a boring day and that quiet time helps restore your mind and body.

The new normal is full of hope and purpose as you struggle to understand what is truly important to you.  It’s filled with action, not answers, as you decide not to waste any time on unimportant things, people, and events.  It’s about redefining what success means to you as you pursue the things that matter the most. It’s the understanding that time, energy, and money are limited and not to waste any of it. It’s the reason why I pursued a new position at my company doing what I love, on buying a new home, and starting the process of adopting a baby girl from Guatemala.  You learn that life goes on and it can be great.  Different than what you thought, but still great.

The new normal teaches you that life is full of choices and that you decide each day how you are going to live it. It’s realizing that we possess unlimited potential and that WE stop ourselves from our dreams with negative self-talk and a lack of confidence. We choose our moods, feelings, and actions each moment and I have decided to live each day with optimism and purpose. It means that I am hopeful for the present and the future and that I choose to see only the good in other people and situations. The “realistic” people tell you that you are being naive or a pushover and that your choices aren’t practical. They try to talk you out of your decisions on how to live your life. They ask “Why”?  My reply back is “Why not?”

The new normal is truly feeling the unconditional love from your parents, siblings, family, and friends and knowing that you are never alone.  That people who you barely knew before your diagnosis stepped up to the plate and helped in any way possible.  It restores your faith in people.  It makes you appreciate all the unique qualities of each person and to be sure to tell them how special they are.

The new normal knows that once you’ve been through this experience you know you can handle anything.  As a result you are less fearful and are more open to taking calculated risks.  What’s the worst that can happen, right?  You worry less about what people think about you and that it’s okay to sing Broadway show tunes at work or to bluntly tell people what you think of them.  And even if things do go wrong or go not as you planned, you learn that this too shall pass and that you only take the time to fix the things you have control over and not worry about the things out of your control.  It just wasn’t meant to be.

The new normal has taught me that if all my experiences throughout the past two years has gotten me to the place that I am now; filled with love, purpose, support and in the constant pursuit of my dreams mixed in with some sadness, frustration, and anger then…………

So Be It.

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Dear Cancer: You can’t have it all

There are some dreams in life even cancer can’t dash. For Michelle Kaplan, that was becoming a mom.
It didn’t matter that she was recently divorce when she was diagnosed with breast cancer in 2004 at the age of 37.
“I had eight chemo treatments. I just had my fourth round and I remember I was in that part where you start shutting down around 1 in the afternoon and on this day I just kind of lost it. I just laid down and thought ‘if I get through this, I’m going to be a mom.”
Easier said then done, especially for a single woman now considered a cancer survivor.
“I found out the summer of 2005 – May or June – that the chemo had put me in permanent menopause and that I couldn’t have children of my own,” she said.
Breast cancer treatment had left her mentally, spiritually and physically tired. And then there was the anger of what cancer had robbed from her contained in those nagging, unanswered questions: Why can’t I become a mom? Why is this so difficult for me?
“I got married and always wanted to have kids,” she said. “So after chemo and my diagnosis, I was just pissed.” There were other losses to mourn too – one of three women on the same breast cancer journey died from the disease. “So there was that question of why did I survive and she did not?”
Michelle worked through her breast cancer treatments, something she says she’d do differently if she were to do it again.
Shortly after she finished, “I got a performance review that wasn’t horrible, but it was the worst performance review I’d had. I met 8 out of 10 objectives. But to me, I was busting my ass. I was exhausted and they were totally clueless.
I thought ‘what the hell am I doing? I got angry and decided ‘Enough! I don’t want to be a part of this any more. It’s not acceptable. It was a big wake up call.’”
It was on a business trip around that time that she came across the book The Success Principles by Jack Canfield which gave her the practical steps she needed to take to reach her dream.
“My steps were very specific,” said Michelle. “I decided that to be a mom, I had to get a new job. I had to be financially stable but couldn’t travel as much. I was able to switch jobs in the company. Then I had to get a house.”
On an index card she kept her goals written, along with completion dates. New job by November 1st (she started October 1st); become a mom by May 31, 2007. That one turned out to be a stretch. She adopted her daughter Mia from Guatemala- after being turned away by many other countries because of her breast cancer history – and brought her home July 7, 2007, exactly three years after her breast cancer diagnosis a little more than a month shy of her goal.
“Cancer is my benchmark for everything,” she said, explaining how it’s changed her views in life. “It did give me the strength to say ‘I now know what I want to do.’”
“Before cancer, I always knew what my path was in my heart, .but in my head I would talk myself out of it After cancer, do it.”
Michelle is a life coach and now gives back by teaching classes for cancer survivors who are trying to adjust to their “new normal.”
“Your life is never going to be the same again, even if you’re in the same place so as soon as you realize that the sooner you’ll be able to move on a little quicker.”
Her advice: take some time alone somewhere quiet – the mountains, the beach.
“Ask yourself what you really want in your life and .resolve to pick one thing you absolutely have to have and figure out how to get it in your life And if you don’t know how, well just ask, ask, ask.
Authors note: Michelle wrote an incredible piece describing the “new normal” life after cancer which I have shared in a separate post.

3 Steps to take
1. Take some time alone, preferable in nature, such as the mountains or the beach. Check out Mary’s Place By the Sea, a free retreat house for women cancer patients and survivors in Ocean Grove, NJ.
2. Pick one goal that you absolutely have to accomplish in your life and put together a plan to see it through.
3. When you get stuck or don’t know how to move forward, ask, ask, ask!
Recommended books
 The Success Principles by Jack Canfield
After Breast Cancer: A Common Sense Guide to Life After Treatment by Hester Hill Schnipper

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Piecing back a life

As I face life after breast cancer treatment, I find I have more questions than answers about how to move forward. So I’ve decided to refocus my blog to examine the lives of the brilliant, successful, fun and happy women who have gone before me as breast cancer survivors. I have separated out the concrete steps they took to get them to where they are today.  I hope to find answers in their experience, strength and hope.

When Sally Creswell was diagnosed with breast cancer in August 1991, she was unemployed, separated and living in an apartment with no furniture.

“In treatment I was just going to get through it. I told myself ‘I can do this.’ But when I was done, no one was watching me. It’s like suddenly you are totally on your own and I was afraid of how my life was changing.”

She was 35 and still wanted children, even though doctors told her not to try, as the high estrogen levels could trigger a recurrence.

“I was feeling a lot of uncertainty for the future, helplessness because I was no longer doing anything,” she said. “There was also some anger about the anxiety I was going through every time I went back for a check up or scan.”

And then there were the unanswered questions: Why me? Will it come back? Will I know if it comes back?

“I had grown up with the message cancer always kills and I was questioning how long I would live, because the statistics were horrible and no one in my immediate family had had it.”  Family members added to the anxiety by expressing their fears that this could be her last birthday or last Christmas.

Not only had breast cancer robbed her of a chance to have her own children, but it detoured her career. The company she worked for had gone bankrupt. While she had plenty of lucrative job offers, she had to refuse them in order to undergo breast cancer treatment.

“I felt out of control and that my life would not be the same,” she said.

Still, she started her own business just as she was starting treatment for breast cancer.  And that gave her something to focus on as she tried to piece back together her life.

“The first thing I did after treatment was get a higher neck bathing suit. I exercised more and went to the beach a lot,” she said.  She found the sound of the waves and the salt air calming.

She also started reassessing her life, her relationships and what she wanted in life.

“I wallowed for a while,” she admitted. “I did not like the person I was after treatment because in my head was the thought that my life was over.”

To pull out of it, she read a lot of self-help books, joined Alanon, journaled, saw a therapist, went on antidepressants for a time and put together a plan.

“I think I journaled some and figured out all the obstacles that were holding me back, where I was unhappiest and decided I had to change those things,” she said. “One thing I decided was that I needed to get out and meet people

“I also think cancer made me realize who my friends were and who they weren’t and that I needed to make better friends and get out of the life I was living.”

Within a year, she had built the business enough to get a mortgage and buy a house in Frenchtown, a small community along the Delaware River. There she got involved in the business association, Alanon and other community groups, where she formed deep, lasting friendships.

Still, there were times fear crept in at night as she tried to sleep. “When I was really anxious, I had a mantra ‘In with the good, out with the bad.’

“What Alanon taught me is that worrying about something you have no control over is just stupid.  Exercise, eating well, you can control that. But otherwise, you just have to remember time counts now, so make the best of it. Be good to yourself and every now and then pamper yourself.

3 Steps to Take

These are the steps breast cancer survivor Sally Creswell took to get her life back on track:

1. Make a list of all the obstacles in your life and what you need to do to change them.

2. Get out and make some new friends. Look in the newspaper or go to meetup.com and see if there’s a group you want to get involved in.

3. Find a mantra that works for you in the anxious moments – such as “In with the good (inhaling) and Out with the bad (exhaling).”

Recommended books:

These are the books breast cancer survivor Sally Creswell recommends:

Codependent No More, by Melody Beattie

Love, Medicine and Miracles, by Bernie S. Siegel.

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