Taking Care of a Loved One with Cancer


A few weeks ago, I received an email from Cameron, who read my post and asked if he could send me something he had written to post on my blog.  His wife, Heather, doesn’t have metastatic breast cancer.  She has mesothelioma.  I have to admit, I didn’t know much about the disease, except that I’d seen commercials from law firms looking for families who wanted to sue because their loved ones had the disease.

As you will see, once you read Cameron’s post, he is a devoted husband and father and has a story that deserves to be shared.  Not enough credit is given to the caregivers – those who walk the walk with us and are with us on our good days, as well as our bad.

Here is Cameron and Heather’s story.  I am honored to share it with you:

November 21, 2005 is a day my wife Heather and I will never forget. On that day our lives went from spending our time doting on our three month-old daughter, Lily, to fighting my wife’s diagnosis of malignant pleural mesothelioma. My wife, Heather, was in shock and disbelief. I learned before we even left the doctor’s office that I would have to start making decisions to help her through this. When the doctor laid out our treatment options, Heather stared silently, in shock and disbelief. I quickly made the decision to visit David Sugarbaker, a doctor in Boston who specialized in mesothelioma, and away we went into our life of chaos.

Heather was no longer able to work and I was only able to work part time in order to juggle the doctor’s appointments, travel arrangements and caring for our daughter. I soon became overwhelmed financially, physically, and emotionally. Would my wife die from this disease and leave me alone broke and with a young daughter? I spent many times bawling my eyes out and wondering if it would ever end.   

Luckily we had help. If anyone offers help of any kind when you are sick or a caregiver to someone else, take it.  I learned the hard way that there is no room for pride when a loved one’s life is on the line. We received friendly ears to listen and money to help us through the tight times. Family, friends and even complete strangers reminded us that we were not alone and gave us fewer things to worry about.

It was hard. Taking care of my wife while keeping the household running was the most stressful, exhausting, and uncertain time that I have ever experienced. There are no vacation days and you must keep going because you are the one that your family is depending on. You have to give yourself permission to be angry and scared and have bad days. Don’t give up hope and use every resource to pick up again and keep going.

It has now been seven years since that diagnosis, and my wife is cancer free. Heather went through surgery, radiation, and chemotherapy but she managed to beat this awful disease. Heather’s ordeal reminded me that time is precious and inspired me to go back to school. I studied Information Technology and graduated with high honors. I was the graduation speaker of my class, and Heather and Lily were in the audience to cheer me on. During Heather’s fight with mesothelioma, I never even thought that this could be my life. Never give up hope and always believe in yourself, and you can accomplish amazing things. 

Enjoying the Gifts of Life in Spite of Metastatic Breast Cancer


It’s been a while since I’ve posted, but the reason for my silence is all good!  My 28-year old daughter (and only child) is getting married on June 2nd and life has been a lot busier lately.  She stresses out easily and my main role has been that of chief “voice of reason” as she suffers anxiety over every little wedding detail!

One of the things I do to help me in my own journey with metastatic breast cancer is to facilitate a 4-week workshop at the cancer center at which I am treated.  The program is called “Writing About Cancer” and includes 8 topics.  The group (including myself) writes about 2 topics each week.  Regardless of how many times I facilitate the workshop, I always come away from it with a cathartic realization about my own journey with breast cancer.

Following our writing about a specific topic, each person reads what they have written and the group discusses it.  Last week, I wrote about being diagnosed with stage 1 breast cancer at age 35 when my daughter was 5 years old and in kindergarten.  I never looked at my survival in terms of 5 years, 10 years, etc., etc.  My goal was to see my daughter graduate from high school.  Of course, after the first 5, then 10 years, that thought  came into my brain less and less as I was moving along with life and the fear of recurrence diminished with each passing year.  In 2002, I was asked to say a few words at our hospital’s Cancer Survivor Day (I work in the public relations department).  Of course I said yes then gave absolutely no thought to what I was going to say.  When the microphone was handed to me, I told a totally off-the-cuff story about how my daughter was 5 when I was diagnosed and all I wanted was to see her graduate from high school.  Then it hit me – she was graduating that Saturday – just 3 days after the Cancer Survivor’s event at which I was speaking.  It came out of my mouth like a revelation.  Everyone started clapping and there wasn’t a dry eye in the house.  Even my oncologist came to me for a teary-eyed hug!

Writing about and relating this story all these years later in the writing workshop left me with an incredible sense of thankfulness and joy.  Here I am, now dealing with stage 4 breast cancer, but  in a few weeks, I will be dancing at my daughter’s wedding!  How lucky am I?  Yes I have metastatic breast cancer, but so many of my metsisters will not live to see their children graduate from high school, let alone see them get married.  Just a few weeks ago, we lost Alicia from CT.  I met her only once, but she had 3 young daughters who she cherished.  Alicia will not see them graduate from high school.  She won’t be dancing at their weddings.

The on-line support group to which I belong (BCMETS.ORG) has post after post about women just like Alicia.  Some have young children and aggressive disease.  Some are single moms.  Some wonder how they will pay the bills until their disability payments start.  Some wonder if they will see their children even begin high school, let alone graduate.  The stories are heartbreaking and only the hardest hearted would not be moved.  The stories bring out feelings of anger, sadness and helplessness that I struggle with for many reasons, not the least of which is that I know how blessed I am that regardless of where my breast cancer journey takes me going forward, I have been able to be a part of my child’s life – something many women are robbed of by this insidious disease.

I can be sad over many things metastatic breast cancer may rob from me in the future, but for me, for now, I have been given an amazing and wonderful gift.  In spite of what may lie ahead for me.  I will dance at my daughter’s wedding!

Don’t Stop Believing!

Deb

Seize life today, for that may be all there is …


Wanted to share this interesting article posted on today’s KevenMD.com.  It sure gave me something to think about!

http://tinyurl.com/89lvdrl

Don’t Stop Believing!

Deb

Finally – A Journalist Who Gets It!


This article was on the opinion page of many newspapers on Sunday, Febryary 12, 2011.  The author obviously “gets it” and her opinion deserves to be shared.

http://www.dailyrepublic.com/opinion/statenationalcolumnists/komen-race-for-the-cure-a-misnomer/

Thank you, Bonnie Erbe!

Don’t Stop Believing!

Deb

Dear Nancy,


I see that your organization, “Komen for the Cure” is getting a little bad press today.  In fact, I just heard the news on CNN that you’ve pulled funding to Planned Parenthood – funding that was used to pay for mammograms for women who are underinsured, uninsured or otherwise cannot afford to pay for them.  It’s all over Facebook as well, and I understand your Facebook page is being bombarded by comments coming in from all over the country.  As we all know, you started the organization in 1982 to honor your late sister, Susan Komen, who passed away as a result of metastatic breast cancer.  Cheers to you and your rich pals for being so pro-active in trying to find that cure.  After all, that’s why millions are donated each year – so you can do just that.

It seems as though you take quite a large salary (and you are already very wealthy) and have even held positions in George W. Bush’s administration.  Why should it surprise anyone that you have caved to pressure from your wealthy right-wing pals to pull funding for free mammograms performed at Planned Parenthood  facilities.  As I see it, the problem is that Planned Parenthood also performs abortions, and that is the basis of the pressure to which you succumbed.  Abortion is and probably always will be a political hot button, but it has nothing to do with breast cancer and pulling funding for mammograms that just happen to be offered by the same organization that provides abortions makes no sense, even to those who have bought into your “savior of the masses from the horrors of breast cancer” image that you certainly do nothing to deny.

As for me, as a woman with metastatic breast cancer, I, along with many of my metsisters and brothers, stopped listening to your message a long time ago.  You claim to be “for the cure” yet you give less than 5% of the millions raised each year to research for metastatic breast cancer.  Now, you are pulling funding for mammograms because you don’t agree with the politics of the organization providing the mammograms.  Thanks to you, breast cancer awareness has come a long way since 1982, but now it’s time for you to stop talking the talk and start putting the money raised by your organization towards really making a difference (and I certainly don’t mean that we need a cancer-friendly perfume or to see your logo on 1 million more retail items.)

My message to you is simple:  Restore funding for mammograms (even if it means writing a check to Planned Parenthood) AND substantially increase funding for metastatic breast cancer research.  The rest is, quite frankly, nothing more than a feel-good marketing ploy that is sending the wrong message.  Komen can only be “for the cure” when the funds raised from children selling lemonade, people walking, swimming and buying everything from yogurt to cars really does go to finding the cure.  Nancy, you can make a real difference and the last thing you need is the ugly publicity being generated by pulling funds for free mammograms.

Sincerely,

Deb Ragosta

PS:  Don’t Stop Believing!

Another New Year


For many, the last few weeks have probably been filled with shopping, wrapping, planning menus and running what seems like an endless list of errands.  Regardless of your beliefs, or how you celebrate, there’s always the “day after” when life snaps back into place and all the busyness seems to come to a screeching halt as we crawl toward the new year.

Each year, as we count down the days and minutes to midnight of the start of another year, thoughts of resolutions, new beginnings, and even happy endings bounce around in our heads to replace shopping lists and last-minute errands that clogged our brains just a few days ago.  Just as the holidays come and go each year, the start of a new year comes with things we can be absolutely certain about (the sun will rise and set each day), things we can be relatively certain about (more than 40,000 women and men will die from breast cancer) and things we are less certain about (a cure will be found to finally end the scourge of breast cancer.)  Like any other year, 2012 will bring us the mundane and the profound – the joy and the sadness and, of course – the hope and despair that comes with the reality of metastatic breast cancer.

I’ve never been much of a New Year’s Eve reveller and certainly never one to make resolutions I knew I couldn’t keep.  That’s ok though, because I really don’t have any bad habits I have to get rid of.  I’ve never smoked, I try to exercise (when my back allows) and after being overweight for most of my adult life, a stint at Weight Watcher’s about 10 years ago helped me take the extra pounds off that I’ve managed to keep off (and, no, I didn’t start WW in January – I started the week of July 4th.)  Why is it, then, that these days before we begin a new year tend to bring a cloak of sadness that hovers over me, ready to cover me in tears.  Long ago (pre-mets) I came to the conclusion that I am sad for the lost opportunities – things I let get by me, never realizing that those opportunities may never come my way again.

Having metastatic breast cancer has taught me a lot about myself, my life and my ability to look to the future and to the promise of a new year filled with the hope that maybe 2012 will bring researchers the answers, once and for all time, to finally find a cure for breast cancer.  As long as I have that hope, I can face the new year, for I have to believe that one of these years, we will be rejoicing a new year without the reality of metastatic breast cancer hanging over us.

May 2012 bring us closer to the cure.  May you all find joy in even the everyday, seemingly meaningless moments of your lives, may you find peace within yourselves and may each day bring a reason to smile!

Happy 2012!

Don’t Stop Believing

Deb

The 2011 San Antonio Breast Cancer Symposium


Instead of writing my thoughts this week, I thought I would share two interesting articles about announcements made at this week’s Breast Cancer Symposium.  After reading the articles, I thought, once again – small steps.  I don’t want another 6 months.  I want a long life!  After re-thinking my initial reaction, however, I’ve changed my opinion.  I now look at what seems like small steps to be part of the walkway that will eventually find a cure for breast cancer.  Of course, I would like that cure to come in time to benefit me and my metsisters and brothers, but if it takes another generation, it will benefit our children and our children’s children and I want my daughter to be able to live without the fear of  breast cancer hanging over her head,

The first article is from the Wall Street Journal.  The second is an Associate Press article posted on Yahoo and sent to me by a friend.

http://tinyurl.com/79pl2oo

http://tinyurl.com/cmb2p8w

Don’t Stop Believing

Deb

Giving Thanks


As I thought about what I wanted to write this week, my mind kept going back to the fact that in a few days, another Thanksgiving will be upon us.  The holiday means different things to different people, especially as we grow up and become adults.  For some, Thanksgiving means planning a day to spend with family or friends and either travelling to them or entertaining them in our homes.  For some, Thanksgiving means scouring the ads and planning one’s Black Friday strategy.  For some, however, it means facing the first major holiday without a loved one.  Most of us have been there and many probably agree that the thought of having that empty seat at the Thanksgiving table casts a sad pall over the thought of not only the Thanksgiving celebration, but of the coming weeks as we head towards other holidays.

In the past few months, we have lost several women who were regular posters on bcmets.org.  We miss them, not only because they are no longer a part of our group, but because they represent what lies ahead for us.  One day, the “sad news” will be about our own passing, posted by a grieving loved one or another poster who knew us or came across our obituary.  Although it is morbidity that might be unimaginable to some – for women and men with metastatic breast cancer, it is reality.

This will be my third Thanksgiving and holiday season since my own mets diagnosis (20 years following my stage 1 diagnosis).  I’ve now had more than 2 years to think about what I could possibly give thanks for.  To be honest, my first Thanksgiving following my diagnosis in 2009 was filled with sadness and uncertainty.  I looked around the room at the big family gathering and pictured future gatherings without me.  The fact that my ex mother-in-law, who I adored, had died from lung cancer earlier in the year didn’t help.  In 2010, I was invited to my daughter’s boyfriend’s parents’ home.  Since I hardly knew them, most of the day was filled with small talk and honestly, with the exception of my daughter, not having to be surrounded by family actually helped me because I didn’t have to spend the day trying to show how good I was doing to relatives who saw me once or twice a year and expected me to be sick because I have advanced cancer.  I still wasn’t ready to “give thanks,” though.  As we headed to this year’s holidays, I decided that I was ready to give thanks, because, in reality, I do have many things to be thankful for.

Of course, I am thankful that my cancer hasn’t spread.  It’s still in my back and has made no move.  (Passing the 2-year mark in October was huge for me!)  Once again, I will be spending Thanksgiving with the family who are now my daughter’s future in-laws, as she and her wonderful fiancé will be marrying in June, 2012 – yet another thing to be thankful for.  I am thankful for those who have passed, as they left me a very powerful message about facing metastatic breast cancer with dignity and grace – never giving in to the part of cancer that can so easily strip our soul and spirit.  Most of all, however, I am thankful for my family, friends, co-workers and medical team.  Without their continued support, I could not walk my walk.  They lift me in the moments I need them and are always willing to laugh with me on the good days and cry with me on the bad.  I am incredibly lucky to have them in my life and although it’s taken me more than two years, I can finally say I give thanks for my wonderful life and can once again wish others a “Happy Thanksgiving.”

May God Bless you on this Thanksgiving, and always – on the good days and the bad!

Don’t Stop Believing!

Deb

The Care We Get


During these days leading up to Thanksgiving, I have decided that each day I would post on my Facebook page something for which I am thankful.  In one post, I wrote that I am thankful for my amazing medical team. Led by my oncologist, they are not only the people who take care of me from the minute I walk through the door, they are also my friends and guardian angels.  The post generated many “likes” and comments.  The comments (some from women with metastatic breast cancer) made me realize that the care I take for granted in actuality is not the norm for many women.  I’m not talking about health insurance (that’s another blog for another time) but about the actual care we get from our oncology team – from the person who books our appointments and tests to the nurse who administers our treatments to the physician who guides our care. 

 Hillary Clinton wrote that “it takes a village” to raise a child.  I believe we can use the same analogy when referring to caring for each cancer patient.  Traveling through the maze of tests, treatments, appointments and opinions can be daunting, to say the least.  To be told things like “call us in a week to get your test results” or “you need a CT scan, so here’s the number to call” is very frustrating for any patient, but to those who have disease that will be with us forever, and will most likely be the cause of our deaths, it can be the cause of unnerving stress and unnecessary anxiety piled on top of trying to lead somewhat normal lives of working, raising families or just getting through each day with as much sanity as possible, regardless of what that means.   From the day we are diagnosed, these are the people who have the power to make our journey with metastatic breast cancer bearable.  They may not be able to change our fate, but they can cerainly make the day-to-day medical stuff a whole lot easier to deal with!

 In a perfect world, our medical teams would anticipate our every need and address those needs before they became issues.  Of course, that is unrealistic, but I believe it is our own voices that can be powerful tools and equal partners in the care we receive.  Gone are the days when we looked to our physicians as gods of healing, but in reality, our physicians can only help us if we take down the traditional wall of knowledge that existed between physician and patient and become true partners in our care with them and their staffs.  If a physician is not open to this kind of doctor-patient-staff relationship, it may be time to find another medical team.  If you have to wait an unacceptable amount of time to get test results, it may be time to find another team.  If your calls aren’t returned and you find yourself checking your cell phone constantly for days to make sure you didn’t miss a call, it may be time to move on.    

I could go on and on, but I think you get the point.  The care we get is our responsibility to advocate for, regardless of the level of our expectations.  Although we are all different with different expectations, our medical team should be willing to provide for us what we expect – because that is what we deserve.

Don’t Stop Believing!

Deb

Back to Reality


It’s November 1st and we can finally turn the page on the “month-that-never-seems-to-end.”  Many cities and towns in the northeast ended the month with a snow storm and lots of power outages and damage from downed trees.  (I was fortunate – my power went out for only 4 hours.  There are some homes still waiting for power that went out 72 hours ago!)  They are minor annoyances in the big scheme of life, but difficult, nonetheless.

Now, however, with another “Pinktober” behind us, it’s time to return to focusing on the reality of metastatic breast cancer.  Approximately 3,500 women and men died from breast cancer in this country during Breast Cancer Awareness Month, 2011.  For their families and friends, Octobers to come will be filled with bittersweet memories, not feel-good walks and ribbons and yogurt tops, but thoughts of their loved ones who passed from this life before the “cure” we hear so much about became a reality for them.  Unfortunately for women and men with metastatic breast cancer, “awareness” does not equal “cure” and there will be stinging reminders of that fact, especially in October, until there is a cure for breast cancer.

Last evening, as I do most evenings, I checked bcmets.org to read the day’s posts.  (If you haven’t been to the site, it is a great place to get to know others dealing with metastatic breast cancer.  The women [and a few men] who post on the site come from all parts of the world and are an amazing source of information, advice and support.)   The subject of one of yesterday’s posts was “Good-Bye.”  Sadly, the post was from one of our frequent posters, “Angela from CT.”  She was telling us that her physicians have stopped her treatments.  She was at home with hospice care and has only a few weeks to live.  She thanked us for our support, friendship and love.  Of course, there were many replies from others, but what can you really say when you are saying good-bye for the last time.

Every once in a while, the women who post on bcmets.org will suggest a get-together for others on the “list” who live in the same geographic location.  Last summer, Angela was the driving force behind a New England gathering.  She offered to host the luncheon at her home.  We all brought something, but she and her wonderful husband did most of the cooking.  It was a cool and sunny August day – perfect for loving life and enjoying one’s blessings.  Eight women came together – all with our war stories, all at different points in our lives and disease, but all grateful for the gift of the friendships we had formed that day.  Angela had been through the most treatment, yet she had a smile that wiped away the pain of what she had faced or would face in the future.

Angela and I really connected that day and we stayed in touch by email, separately from bcmets.org.  Of course, after reading her farewell post, I was devastated by her news. I met her only once at our lovely summer luncheon at her home, but I will remember her for the rest of my life. Her strength, courage and grace will be in my heart forever.

I remember someone once giving me a framed sentiment that some people are in our lives for a long time, but some pass through our lives for a very short time, yet have the biggest impact.  For me, Angela is that person. I met her when I was less than a year into my mets journey, but her example showed me that it is, indeed, possible to walk our walk with grace and dignity.  I will never forget Angela’s hospitality, warmth and welcoming smile. I am honored to have known her.

Yes, October is over and reality has returned.

Don’t Stop Believing!

Deb

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