#voicesofMBC – Colleen Hofmeister ~ {We are scared and lonely}

#voicesofMBC is my social media campaign to bring awareness to metastatic breast cancer and to lend a platform for those afflicted with this illness to be heard. Every Monday, until the end of the year, I will share a personal testimony or story of a woman (or man) living with stage IV breast cancer.

Today, I would like to introduce you to Colleen Hofmeister.  Her story goes deeper than she shares, but her authenticity and ability to see through life is real.  She lives life knowing that her past, present, and future is not based upon a diagnosis of cancer.  Her honesty: priceless. 

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Colleen and her son, Liam

She is not afraid to tell it as it is.  Her phrase ” we are scared and lonely” is one of the most powerful statements I have felt personally since being diagnosed myself.

May her testimony be one that encourages and educates.

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Me: Can you share with our readers what your life was like before you were diagnosed with metastatic breast cancer and how you got to the stage IV diagnosis?

Colleen: Prior to the metastatic cancer diagnosis, I was one busy lady! I worked full time plus as a manager for the largest municipal parks system in the country, handling all of their legal work. Our two children (ages 11 & 15 at my diagnosis) were involved in many extra curricular activities and I never missed one. My husband and I were very active socially as well as doing some volunteer work. Boaters, we spent our summers on Fire Island–a magical place between the Great South Bay and the Atlantic Ocean.

In 2006, I began to develop some hand/back/neck pain. I did NOT have time to deal with it, but eventually dragged myself to my GP’s office. Months and months of testing led to an unexpected MRI report–it looked as though my bones were full of holes, symptomatic of metastatic disease. HUH? I had gone regularly for mammograms and sonograms and never had a blip. More tests and a biopsy proved the worst of worst news–I had breast cancer which had gone undetected until it had already infiltrated my lymph and skeletal systems. I was 44 years old.

Me: Tell us about your current treatment and its side effects.

Colleen: I am not currently in active treatment. In 2011, I landed in a Hospice facility after almost dying from the chemo combo of Taxotere and Cytoxan. Waving the white flag, I surrendered and declined any further chemo. A strange thing happened as the months went by–I got better. While the cancer wasn’t gone, it was pretty much holding its own. Since that time, I have been diagnosed with an aggressive endometrial cancer, received multiple surgeries, and gone through three different rounds of radiation therapy. I continue to politely decline chemotherapy.

I do, however, suffer from severe bone pain (kept at bay by various narcotics) and fatigue. A shattered ankle last summer is still very slow in healing–no doubt the bone metastases play a part in that. Damp days are extremely uncomfortable for me. I require more rest and can no longer work full time in a stressful, fast paced environment. Giving up my career has been an especially tough blow.
Me:  How has cancer changed your life? Did you have one pivotal moment or has the journey been one of progression and growth?

 Colleen: You will never, ever hear me utter the words, “Cancer has been a gift!” It has robbed me of optimism and hope, cost me precious relationships, placed an unbearable burden on my marriage, made me face more losses than any one human should have to tolerate, and stolen my children’s innocence at far too young of an age. It is painful, it is frightening, it is debilitating.

Shortly after diagnosis, I began reaing books written by Dr. Bernie Siegel. He describes patients he has known–.patients he refers to as exceptional cancer patients. I vowed to be one of them. I often joke that I earned my medical degree within months of my initial diagnosis. A quick study, I poured through anything and everything I could find that might lead to a cure. Seeing glaring problems in the way late stage cancer patients are treated, I have been a vocal advocate for us all. I’ve written articles, filmed a television commercial, and been interviewed numerous times. I want the world to know what I didn’t know–that you can do all of the right things and still be diagnosed with late stage cancer.

I am not the person I was eight years ago. I am a much more peaceful soul–certainly having learned not to sweat the small stuff. I am grateful for each day with which I am gifted. My main goal upon diagnosis was to see both of our children graduate High School. That feat was accomplished last year. Now the goal line has been moved to college graduations, and then first jobs, marriages, grandbabies…my work is not done yet.

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Coleen and her husband, Eric.

Me:  How do you live your best life now, thriving with a metastatic diagnosis?

Colleen: Hmmm, there are many days when I certainly do not feel as though I am “thriving” with this disease. Metastatic breast cancer has most assuredly clipped my wings. But, on the good days, I do my best to get out into this beautiful world and SEE things. My favorite spot is by the ocean, and now that I am no longer working full time, I intend to spend a great deal of time there this summer. I enjoy writing, travel, and spending time with good friends. Most of all, I enjoy seeing our children coming and going as they enter into adulthood. I continue to work on advocacy, as the onus is on us all to educate the world about our plight and the need for more funding for a cure. The world has awareness–we now need to expend funds on researching what causes metastases and how to stop them.
Me:  What makes you most happy, and where do you find the most joy?  

Colleen: I’ve always been most happy when at the ocean. Prior to the breast cancer diagnosis, my family and I were fortunate to rent a beach house each season from May until October. There were no cars, just boardwalks and wagons to pull your wares. We’d all gather on someone’s deck to toast the sunset. Cancer is expensive, and funding for the beach rental disappeared when cancer reared its ugly head. I’m blessed to have several friends with beach houses, and continue to get the most peace from a walk along the shore scouting for perfect scallop shells.
Me:  People mean well, but often they don’t know what to say, so they say the WRONG thing. What is the worst thing people have said to you in regards to having cancer?

Boy do people ever say the wrong things! We’ve all been hit with the “But you look good!”, “My aunt’s plumber’s next door neighbor died a horrific death from cancer.” and “You’ll beat this, you’re strong. I could never be as strong as you are.” comments. I think perhaps the most insensitive comment was when someone I knew fairly well asked me how things were going. I was honest, I had just been diagnosed with an all-new, aggressive cancer and things were not going well. In response, she plastered on a fake smile and said, “Oh that’s good.” WTF????
Me: What do you find is helpful for those wanting to encourage and help us but yet not knowing how?

“We are scared and lonely.”  Each and every day we are fighting for our lives, fighting to put up a brave front. I’m fortunate to have many beautiful people in my life who continue to do countless thoughtful things for me. The best? Organizing a meal train, sending a funny card on a regular basis, dropping off a gift card for take out food, inviting me out for lunch and offering to pick me up for a specific day and time (the vague “we should get together sometime” is not helpful), telling me they are praying for me or saying a rosary for me each day. What do I wish people did more? Inviting my husband out for a beer to check in on him. Recognize I am not a phone person and agreeing to communicate with me via e-mail or text. Offer to help me clean out a closet or countless other things that need to be done around my house that simply are not getting done. Tell me you know I must be scared and ask me if I’d like to talk about it. I honestly have no one in my life who will “go there” and talk about the “what ifs”.
Me: Do you feel that those of us living with metastatic disease are overlooked by the pink tide of awareness for early stage cancer in October? How would you change that?
Colleen: Oh my gosh YES are we ever overlooked by the pink fluffy wave of breast cancer awareness! I want to hide away during the whole month of October. Early detection is great and if it saves lives I’m all for it–but the reality is it is not a fool proof method. The public has NO idea that 30% of all folks who get breast cancer will one day be diagnosed with metastatic breast cancer–that’s far too many people. And where is the funding???? Stop selling pink toilet brushes which only put profits in the manufacturer’s hands and let’s start getting some funding for research into metastatic disease! It is only by learning as much as we can as to what causes the cancer to spread that we will be able to stop it. I want people to know that what happened to me could happen to any one of them. While I don’t ever wish it, that is the simple reality.

ME: What do you want people to know about YOU and your life living with this disease?

Colleen: I want people to know that I am not a super hero; I’m more–I’m a mother. When that doctor placed my babies on my chest upon their birth, there was never a doubt in my mind that I would be HERE for them for the rest of their lives. My children are my life, my breath, my hope. I will fight day and night to continue to LIVE with this horrific disease. I think cancer hates happiness and humor so I fill my days with both.

Me:  Do you think our cure is near?

We are making great headway with all of the genetic research that is being done. I was recently found to have a PALB2 genetic mutation. While we don’t yet know how to treat someone with this mutation, it is a clue. The problem is, there are so many different kinds of breast cancer–the cure will not be a “one size fits all” kind of thing. Still, knowledge is power, and the more we know about each of our particular cancers, the closer we come to a cure. Is a cure near? Good Lord, I certainly hope so. Over the past few weeks I have heard of far too many beautiful, young mothers passing away from breast cancer. Each and every one of those precious children left behind deserve to know their mother’s love well into adulthood!

Me: What is one “action” point everyone could do TODAY to promote awareness of MBC.

Some how we need to get the word out about metastatic breast cancer; that it is the breast cancer that kills 40,000 folks in the U.S. each year. Folks who are lucky enough to live outside the world of breast cancer have NO idea that early detection is not the end all, be all. Our society has become so pink and fluffy I’d hazard to bet that many people are not even aware that thousands of women–many of them young–are dying from breast cancer each day. Once the world becomes more aware, funding needs to be directed towards researching a cure. Metastatic breast cancer receives a woefully small amount of funding for research from the whole cancer fundraising machine, that has got to change.

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Coleen and her daughter, Devon.

Me: Do you have a favorite poem, song, quote, or work of art that you would like to share with us.

One of my favorite quotes is by Eleanor Roosevelt,

“Women are like tea bags; you never know how strong they are until they are in hot water.”

 

A song that resonates with me on a regular basis is Carly Simon’s “Life is Eternal”.

And the best work of art in the universe, in my opinion, is the ocean. The sound of ocean waves lulling you to sleep is miraculous.

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This is Coleen’s story.  Honest and vulnerable.  I would love to hear yours.  If you are a metastatic breast cancer patient, a caregiver or loved one of a MBC patient- please contact me.  I want to tell you your story.  Email me at Lkailani@gmail.com.   or use the contact form below.

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5 thoughts on “#voicesofMBC – Colleen Hofmeister ~ {We are scared and lonely}

  1. Lesley, thanks for interviewing Colleen! She is a gem and a daily source of inspiration. I have always admired her can do and F cancer attitude…. I’m liviving my life despite cancer bitch mindset. You should bundle this up with your other interviews and route it to those who make the decisions relating to how cancer is funded. Instances of breast cancer are high in our region so sadly Colleen’s reality is shared by two many others. Loved the quote – absolutely a ringer match for Colleen’s sensibility

    1. Thank you Ted for stopping by. Colleen’s story; authentic and inspiring. I am honored to have been able to tell her story and many others who like me, who share this diagnosis. My hopes for the #voicesofMBC is to continue to get heard….to flood social media with our stories and get funding pointed to where it needs to go. I’d love your help to get that done. Share Colleen’s story, our blog and our Facebook page, as much as you can. We are all in this together. ~Lesley

  2. Got it, thanks. Will look it over and let you know if I have any questions. Omada

    Sent from Samsung tablet.

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