Category Archives: Uncategorized

Nancyspoint reblog: Bending into the wind

I’m pleased to share the second #MetsMonday featured post. This one is from Liz Johnson, blogger at Breast Cancer Conscript. Liz was diagnosed with metastatic breast cancer in February 2015, less than four years after her initial stage 2 diagnosis. 904 more words

via “Bending Into the Wind” by Liz Johnson – A #MetsMonday Featured Post — Nancy’s Point

Resources for keeping your credit clean while paying off medical debt

Credit Karma – This is a pretty good Web site for anything credit. This links speaks exclusively to medical debt.

Bankrate.com – Best known for its updated rates for credit cards and mortgages, this site has some cool tools. This particular link has a few good tips on tackling medical debt and working with providers.

Bill Advocates– This site recommends many of the steps I’ve outlined, but it has a few good links and also is the first to caution NOT to use credit cards to pay the debt. Great advice!

MyFICO – This is the best site I’ve come across when it comes to explaining credit scores, what goes into them, how it’s weighed and ways to improve. The chat room is definitely worth it, as you’ll be with a group of people suffering the same way, some of whom have found a way out. You’ll need to sign up, but it’s worth it!

Credit.com – A fabulous explainer on ways your credit can be affected by medical debt along with links that can help you navigate, including samples of letters to write to providers, creditors or the credit reporting agencies.

Hope, the Ship We Sail Upon

breast cancer hope Hope. That’s really what this blog is meant to be about. I think sometimes I forget that as I struggle day-to-day with the newness of recurrence and how I am trying to fit it into my life.
Hope is the raft that promises that there’s a shoreline awaiting me after cancer has torn my boat to splinters. It fuels the belief that I will live into my 90s despite the threat of this disease. And that I will be active and healthy until my last day.
Hope drives my optimism that something like a cure lies around the next bend. It may not relieve me of this condition, but it will allow me to live with it.
Hope is what allows me to smile, even when I smell like a refinery from the chemicals injected into my body to defeat those pernicious cells and everything tastes like metal.
Hope allows me to make plans – like running for town council or writing a novel or finishing renovations on our historic home.
Hope reminds me to enjoy the sunshine and focus on the things going right in my life – like making a living as a writer in a small, river town with neighbors who are supportive and friendly, the golden threads woven intricately into the fabric of my life.
Hope has drinks with me at outdoor patios with my family and friends as the sun sets on the river on a Friday night, when I speak giddily about the people I’ve talked to that week, whose story I’m grateful to have been able to tell.
Hope is that quiet voice on the bad days that says “you’ll get through this. You will prevail, no matter what.”
Hope is the belly laugh I have with good friends about days gone by, that at the time seemed dangerous and dark and now, looking back, seem hysterical.
Hope are the neighborhood children who knock on my door wanting to go for a walk with me and my dogs, to make a fire and go for ice cream, reminding me that life is too short not to stop, take time out and enjoy it.
In then end, these forces remain: faith, hope and love. The greatest may be love, but hope is the ship that we sail upon and faith is the wind that fills her sails.

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It’s an evolution not a revolution

Hello old friend. It’s been a while since I’ve written and so much has changed. At the beginning of the year, you know, the month of January when you’re fresh and bold and ready to make the changes you need to get things done and feel accomplished, I made my appointment to have my final implants put in. Long story about why I haven’t had it done sooner. A story that gets even longer. Implants are a same-day surgery which require a whole bunch of silly tests and doctor sign-offs. One of those tests was a routine blood test. Nothing to write home about. Until my oncologist called out of the blue looking to schedule an immediate appointment. That appointment led to a few more blood tests, a couple of scans and a phone call in a restaurant from the oncologist to say the cancer is back, riddled up and down my spine and rib cage.
How was it that I didn’t crumble right there and then? Some things I’ll never know the answer to. It had been only two years since I’d undergone the horrors of chemotherapy, radiation and surgery. Two years since my sister took her life, unable to live with the ravages cancer had left her with. And here I was at the precipice again.

January gave way to February and then to March, whose frigid air blew in a new drug regime that include a painful monthly shot in the ass and one in the arm and a new daily pill. Combined, they forbode of hair loss, fatigue and a continual pain in the ass.
Stage IV cancer is a different world from all the other stages. But it’s still a world and one I can live in. It brought with it a new vocabulary – incurable, inoperable, palliative care. Words I didn’t want to hear or believe. Ones I’ve since stricken from my dictionary. And so I revisit this blog with a new message, a new story that looks differently at the past as well as the future – but a future that still is bright and full of hope. And so old friend, walk with me as I tell you my tale.

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How to make your hair grow back after chemo

It’s one of those regular check-ups nearly a year out from chemo and your oncologist looks at you earnestly and asks if you have any concerns and you say “Yeah, why isn’t my hair growing back? It’s been a year since my last treatment and my hair is only 4 inches long. It should be 6 inches by now.”
He looks at you quizzically before launching into an explanation about how some people’s hair take longer to grow than others – but certainly not owning any part that he or the drugs may have played in the process – which isn’t what you want to hear, so you interrupt him and say “and my nails keep breaking and chipping. What’s that about?” which makes him look down at your chart, then up at you and admit “sometimes that happens” which isn’t the answer you were looking for either, but you realize your vanity isn’t his concern, so you decide instead to ask one of the nurses.
But none are around when you leave, so rather you bring it up at a cancer support group, where all five women in attendance chime in about how disappointed they are with their own hair growth, but none has any answers and the conversation gets derailed somehow to what’s the best way to make kale edible.
A few days later you run into a friend, a long-time cancer survivor, who comments on how long your hair is getting, until you tell her that it’s been a year since chemo ended and even she has to admit that it really isn’t that long after all.
So you go to one of those online forums and type in “It’s been a year since my last chemo treatment and my hair is only 4 inches long. How do I make it grow?” When you check back a few days later, there’s a host of responses:
Eat more protein. Take vitamins. Drink green tea. Get it cut (sounds counterintuitive to you). Find a way to make kale edible. All of which you’ve tried (even though you may not admit it) and none have worked.
You look in the mirror each morning and wonder who it is staring back at you, because it isn’t anyone you recognize and you aren’t real sure you want to know her either, because her hair is too short and curly and unkempt and her skin is crepe-like where it used to be smooth and even though she smiles at you reassuringly, you’re still skeptical.
To make yourself feel better, when you get out of the shower one day you take all those short, thin hairs and mash them back off your head into the tiniest ponytail and search the bathroom for a hairband to keep them in, only to find that it’s the hairband that’s making up the ponytail and not the hair.
Still, none of it answers the question of how to make your hair grow back after chemo, which really is representative of the larger question, how do you get your life back after cancer, that you’re still struggling with as you move into a new body with muscles and lymphatic veins painfully stretching in whole new ways to compensate for the losses you’ve sustained to win this battle or whose rhythm has slowed dramatically to quell those fast-growing, party-romping cancer cells, leaving you fatigued, lethargic, with chipped nails and too short hair.
And then it occurs to you that perhaps part of being “cured” is being OK not ever knowing the answer to certain questions, like “What now?” “How do I know it won’t come back?” “How do I make my hair grow back after chemo?” and “How do you make kale edible?”

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How to Get to Gratitude after Cancer

When Dorothy Donoghue finished cancer treatment two years ago, a wave of relief and calmness flooded her.
“I remember, it was May 9th, and I was very happy.”
But then the uncertainty crept in, the nagging unanswerable questions and the fears that followed them.
“The fear of living with recurrence and how to get back to normal living, the hair loss, all that was an adjustment. And even though hair loss was a superficial part of the process, it was indicative of the fact that I had had cancer. Every time I looked in the mirror it was a reminder that I was a different person.”
Dorothy retired from a job she loved as a school guidance counselor in December 2009. She was still struggling with what to do with her newfound freedom when she was diagnosed with breast cancer in August 2010.
“I was trying to find meaning and purpose in my life, how to fill my time, when the cancer came and took over,” she said.
With no immediate family nearby, she relied mainly on friends to get her through treatment.
Those friendships strengthened through her battle. She said grappling with what had happened to her and getting to her “new normal” took time with a series of small steps.
“I found I really recovered very well physically from chemo and radiation. It was the psychological and emotional part that took a greater amount of time.”
She reached out to support groups, read and took advantage of classes offered at Morristown Memorial Hospital geared to cancer survivors – such as Reiki, meditation and other workshops.
“I found I had to sift through what was making me anxious and what was helping me build and move forward.”
About a year after treatment ended, Dorothy said, “I found I was thinking less about the cancer and enjoying more of my life.”
Now she finds she has rearranged the priorities in her life, and she’s more selective about how she spends her time.
“I have a greater sense of gratitude. It’s an important part of my life to be grateful for all the good things I have in my life, especially family, friends, and a growing awareness of the peacefulness that comes from nature. I love to walk outside and appreciate being surrounded by a world of beauty and quietness.”
She’s also developed a deeper empathy for people going through cancer diagnoses and treatments. Her advice to anyone facing a new cancer diagnosis is “to be patient and to deal with everything one step at a time. When you’re first diagnosed you want to speed up the clock but it moves very slowly; you have to be good to yourself in whatever ways you can.
Dealing with cancer is a traumatic experience. For me it was important to talk with people who shared that experience and who helped me through the ups and downs of a difficult time.”
But now, almost three years later, she finds that she “focuses on enjoying life each day. I try to spend time doing the things that make me happy and pursuing new goals for the future.

How to move on with your life when cancer is still in the wings

Sometimes the end of cancer treatment doesn’t mean the end of cancer.  Sometimes the treatment takes years. And sometimes, it’s the mystery of what’s yet to come that makes life magical, even when the unknown seems unwelcomed.

Carole Pepe knows this. She was diagnosed shortly before Christmas 2003 with multiple myleloma, a rare cancer that affects the plasma cells in the bone marrow and once considered terminal, now considered incurable.

Treatment took a good four years and involved two stem cell transplants, heavy duty (read: toxic) chemotherapy and steroids, each of which had its own set of side effects and complications – things like weight gain, fuzzy thinking, listlessness and a suppressed immune system that allowed illnesses such as pneumonia and bronchitis to fester.

Even now as she reclaims her good health, she’s susceptible to bone fractures, sleep apnea and respiratory infections.

“I’m not ever really done,” she said. “I have to be monitored closely and regularly. The farther away I am from (active cancer) the odds are less in my favor and the more fearful I get (about recurrence) But I’ve beat the odds so far.”

To undergo treatment, Carole had to quit her job and spends months at a time in Little Rock, Arkansas where her specialist and treatment center was located.

“I was really weak. I gained 30 to 40 pounds due to treatment. I had a lot of fuzzy chemo brain and would be very frustrated. I couldn’t be part of conversations, couldn’t retrieve words.  They don’t tell you ever little side effect. And I was angry at the loss of my whole identity.”

Getting to her “new normal” took time and change was gradual.

“I didn’t have to go back to work, but it took a while for me to have a sense of worth,” she said. “My job now was to get better and that’s still how I look at it. Not to have any stresses in my life.”

An athlete, Carole intensified her physical efforts with yoga, specifically Structural Yoga Therapy, taught by Mukunda Stiles which focuses more on energy flow, muscle and joint imbalances than physical poses.

“I became very disciplined about exercise. I incorporated it into my life in a different way. I realized how much the yoga helped me through all parts of treatment, so I started to focus on that.

Carole had always been active, running marathons, skiing, biking long distances. But treatment put an end to some of that, limiting her endurance or putting her at risk for breaking now fragile bones.

“It became clear that yoga would be something I would take with me for years and years,” she said.

Now Carole teaches yoga, focusing on a practice for those in cancer treatment or survivorship.

There have been other changes too. “I wasn’t going to waste time with things that aren’t healthy in terms of people or activities. It’s made it easier for me to say ‘no’ when before I would be hesitant.”

She said she’s also learned to be more relaxed and have more fun doing the things she enjoys, such as skiing.

“I really just think we need to look to each day with gratitude and awareness at the specialness of it and make choices that are conscious and mindful

We need to be aware of our place in the universe, which isn’t always something that we can control. When all that stuff happened to me, I was angry and couldn’t find any answers. But now I realize we’re only a small speck. I can’t expect to know all the answers and have everything turn out the way I want it to be. There are mysteries that are unsolved, and the mystery of every day is fun.”

 

3 Steps to take

  • Make a gratitude list, writing down all the things you’re grateful for in this day. Try making the list a daily habit.
  • Try a yoga class. Many hospitals and cancer centers offer free classes to patients, caregivers and survivors. Carole teaches such a class at Yoga Loka, 34 Bridge Street, Frenchtown, NJ every second and fourth Tuesday from 9 a.m. to 10 a.m.
  • Just say No! Don’t waste time on people or activities that don’t bring you joy or that aren’t healthy. Instead, take in the grandness of nature with a walk or hike outdoors.

Recommended books

Comfortable with Uncertainty: 108 Teachings on Cultivating Fearlessness and Compassionby Pema Chodron

Fear: Essential Wisdom for Getting Through the Storm by Thich Nhat Hanh

Or any other books by these two authors

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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A Letter to My Post Cancer Self

Hello There Beautiful!
Yes, that’s you. I know you don’t like your short, curly hair; that you think this illness has aged you 10 years and that you worry about what damage its done to you. I’m here to say – Stop! Stop right now. Stop with the blame, with the complaints, with the criticism and judgement. It’s time to leave that Liz behind with the gorged cancer cells.She’s gone – I’ve asked her to leave, move out, move on to another soul’s being. Not yours. She’s not welcome.
Instead, I’m inviting your creativity and brilliance and compassion to take up her old space, to expand their offices and initiate whatever new campaigns they’d like to or feel they need to in order to flex their muscles and make a difference in this world. Because it matters that you’re in this world. It would be a different place without you.
I want to acknowledge the hardship this journey has been for you. It may have been a year since you were diagnosed, yet it could have been yesterday. I know you’re happy to have the chemo behind you, the smell of those chemicals leaching from your skin gone, even though you swear there are moments when you can still smell them.
I want you to know how amazed I am by your ability to be weak and still make it through. I know there were dark moments – bitterly, scary, horribly dark – and you made it through!
I’m sorry you’ve had to experience this. I’m sorry for the forces that called this into your life. I am not here to tell you that it had meaning or import, but I will tell you that I am proud of the way you responded to it. I know it wasn’t easy and that no matter what you did it wasn’t going to be easy.
But you taught me that I can count on you to hunt down your sense of humor when it’s been robbed from you. You taught me that you’ll continue to put one foot in front of the other, even when it doesn’t feel like you’re moving forward. You’ve taught me that you have a resilience that is like forged steel, which I find admirable.
I am not going to tell you this illness has been a gift . It hasn’t. It’s taken a year from your life and has left you with a body that is weaker. But you’ve risen to the occasion in a way that is truly remarkable and miraculous. And I’d say that’s one of the things I’ve learned about you this year: You are truly remarkable.
Life has handed you challenge after challenge, challenger after challenger and you have used it to deepen your humanity, your kindness, your equanimity and your integrity. And you’re not looking back and gloating, nor are you looking back in anger. You are truly amazing. A gift and I love you, I thank you, I’m sorry and I forgive you.

Liz