Mastectomy and Reconstruction…The Land of the Misfit Toys…Tamoxifen Wars

I Get the News All Women Dread

 

In December of 2002, my world was ripped apart when I was told, at the age of 56, that I had breast cancer. It happened during my mammogram.  It had been two years since my last one; my primary care provider had moved out of state; and I’d been slow to identify another.

In the course of the procedure, I knew something was amiss when the radiologist was called in.  She began calling co-ordinates to the technician who jotted everything down, while I quaked.  I finally asked, “Is something wrong?  Do I have cancer?”  She replied:  “I think when the test results come back, we’ll discover that you do…But I think it’s cancer in its earliest form.”

Next, she asked me if I had a general surgeon to whom I could go, and when I said “No,” she pressed a card with a surgeon’s name into my hand, saying “That’s who I’d go to, if I needed this type of help.” She also recommended I have a stereotactic core needle biopsy, as soon as possible.

I was immensely grateful for her help.  After all, she’d given me the name of a person whose skill she admired. She took the step to make sure I had that name.  As a result, I called that doctor the next day.

My first visit to the surgeon was for consultation and discussion of the mammogram, and ultrasound results, as well as recommended course of treatment.  At this meeting, a physician’s assistant took me into a hallway between examination rooms and slapped up my film, on a device that illuminated it.  She then proceeded to point out the white dots– the signs of cancerous invasion.

Inwardly, I marveled at the insensitivity of all of this:  Here was this professional, showing me my cancer on a screen, as calmly as if we were the opening segment of the medical TV show, “Scrubs.”  The only problem?  My knees were buckling, and I wondered why she couldn’t have shown me this in a more comfortable, private setting.

When my general surgeon discussed procedure with me, she told me she recommended a tandem operation, whereby she’d amputate the breast, and then the plastic surgeon would come in to put in the expander, readying the site for future reconstruction. Her office set up my next appointment with that plastic surgeon.

At my first meeting with him, he asked me why I’d come to him, and I said “Because I have breast cancer– Ductal Carcinoma In Situ (DCIS), to be exact.” It was then he stated matter-of-factly “That’s not cancer.” He went on to argue that DCIS is a pre-cancerous situation, while I wondered why he was so intent on winning a semantics game.

As patient, I didn’t care about precise terminology and whether it fit his purist’s definition.  I simply wanted the problem ‘gone.’ I knew, too, that the hospital board would never recommend mastectomy unless they thought it were necessary.

Boards of hospitals are simply never that generous; they authorize procedures only when they believe they’re warranted.

No, the plastic surgeon was simply preening and showing off.  On a follow-up appointment with my general surgeon, I told her what he’d he said and how it had upset me. She appeared surprised and said she’d speak to him about what she characterized a ‘miscommunication.’

But I’d learn:  Communication problems with this gifted surgeon would hardly be confined to one incident.  There’d be a far more alarming one on the horizon.

On one of the earliest occasions, I came home from one hospital test when I’d had the stereotactic core needle biopsy, whereby one puts her breast into an opening in the examination table (it’s huge, as in “one size fits all”), local anesthetic is applied, and the radiologist probes the breast, from below, with a needle, harnessing ultrasound equipment, to determine exactly where to inject and take samples.

The procedure goes on for approximately one hour, during which time the patient must lock into position without moving. This procedure determines where the outer perimeter of the disease is thought to be—prior to surgery.

Finally, I was told that I could get up, with the enjoinder, “Don’t look down,” coming too late; I’d already seen the carnage below; my blood, bright red against stark white sheets lay in the hole. I went home that day, following five or six hours of testing, with a bloodied bandage on my breast suggesting a gunshot wound.

I was at war with cancer.

Following the core needle biopsy, the news came in:  There was complex activity throughout the breast, considered Ductal Carcinoma in Situ (20-25% of breast cancer detected with mammograms is DCIS, I learned.) The cancer was thought to be confined to the ducts of the breast and non-invasive, concurring with the radiologist’s preliminary assessment.  However, there could be no clearer diagnosis until surgery.

The only course of action recommended was mastectomy, with reconstruction, if I chose.  My doctor explained that my case, along with her diagnosis and prescribed treatment, would come before a review board for their consensus.  I was encouraged to go for a second opinion, if I wished. With that, I sent my records to my brother’s colleagues, oncologists and surgeons at his medical facility, in another state. They concurred with my doctor’s assessment:  The breast had to go.

The day before surgery, I arrived at the hospital for a nuclear injection whereby a dye was injected into my veins, to provide a visual roadmap of the course from breast to lymph nodes, facilitating sentinel lymph node dissection, to determine if the cancer had become invasive. Twelve hours later, I went in for surgery that would put an end to any remaining questions.

Paul and my daughters spent the entire day in the hospital waiting room, awaiting the outcome of the surgery.

When I awoke in the recovery room, my chest felt as if an anvil were on it, and I had trouble breathing.  I barely mumbled what I felt when I began wretching a green, viscous fluid.  With each convulsion, I endured blinding pain, as new stitches strained.

Cardiac specialists were summoned when staff in the recovery room feared I might be in the throes of cardiac arrest.  All awaited tests on my blood enzyme levels.

They determined, in due course, that my vomiting was a reaction to anesthesia. After a prolonged period, I ended up in a crowded Intensive Care unit with high towers of machinery blinking about. I was heavily medicated and recall little of that period.

At the end of two days, I was moved to another room whose only other occupant was a man, a diabetic who’d lost both legs, beneath the knees.  At one point, in his movements, he shifted the sheets, exposing his private region, and I was shocked, indeed. I had always thought hospitals operated with the rule:  Male and female patients are assigned different rooms.

When I told my older daughter of his physical condition (when she visited me later,) she offered: “Hmmm…He has no legs, while you have no breast.” “Mom, it’s like you’re in the Land of the Misfit Toys.”

Following my brief room assignment with him, I was discharged.  An orderly brought me down to the sidewalk, in a wheelchair, where the family car awaited.

My mastectomy and attending crises had resulted in two nights in ICU and a few brief hours in the step-down room.  Then I was apparently deemed fit for dismissal.

The irony was:  Had I voiced an inability in taking care of myself (as in “I can’t do these drains,”) I would have gotten more in-hospital time.  Instead, I was discharged, with the plan that a visiting nurse would come to my home, once a day, over the next week, to change the drains and check my vital signs.

I’d learn from this, too:  There’s such a thing as being ‘too able.’

Now, I am 16 years out from a diagnosis I thought would bury me. I was made as whole again as is humanly possible and I must say, I looked better after than before (chuckle…chuckle.) I share that news with audiences.

And, too, I met many women at Dana Farber (I ended up there for a a tie-breaking opinion when my doctors were dueling regarding drug therapy)—women who were successfully beating stage 4 cancer.

I know I missed posting this for October Breast Month (blame my book, Boomerrrang’s final edits), but Hell, as far as I’m concerned ALL months are critical. My yearly mammogram is coming up, one always fraught with concern, but I’ve already had extension of my life as a result of that procedure.

I encourage all women (because my doctor says younger women are presenting with breast cancer,) to make your appointment today, and if you have any questions, feel free to PM me. I’ve already accompanied some of you on this journey.

P.S. I learned to ask for anti-nausea medication during surgery (my surgery last 6 hours) in all future operations, since hospitals don’t give you that automatically and you don’t want to be coughing up in recovery, as I did. In next 18 months, I underwent 3 more procedures and all went well.

I also learned what worked and didn’t work with reconstruction.

If you’re on this journey, I feel for you but take heart: There are many of us out here who have already made this journey.

***Please feel free to share this post with other women (men are diagnosed, too) to give them hope. I apologize if the Share box doesn’t work…I’m getting website updated soon. In meantime, copy and paste the link.

 

 

Why You Need a Realtor

I spent 8 years as a professional realtor. It was heady, indeed, since I’d left the profession of teaching, after 30 years, at a top salary of $43,000. In my 5th year, as realtor, I made six figures and continued that trend, only leaving when I determined to realize my life goal of becoming a writer. Why was I so successful? I gave excellent service to clients and protected them from situations that could’ve impacted them terribly–if they followed my advice.

In that role, I helped folks buy and/or sell homes, and I have to say: Almost no one in the public understands how realtors work; how they’re paid; or even more important, to whom they owe their loyalties.

Why do I say this? Buyers going around to Open Houses meet a realtor or they call one whose name is on a sign and then they meet for the showing and think “Yeah, she’s nice…I’m sure I can trust her.” They never understand that realtor is exclusively working FOR the seller…representing the seller’s interests (unless in a state like Florida, where almost all realtors are Transactional Brokers–I’ll explain those later.)

Here’s your first lesson: It’s got nothing to do with how nice or friendly that realtor appears to you.

That realtor’s sole fiduciary (remember that crazy term) responsibility is to the seller 

That means they’re never gonna suggest ways that will improve your position; they won’t negotiate in your favor; they won’t offer professional tips to help protect you (i.e. “Well, this home is on well water, so I suggest a water quality test to rule out problems there.”)

Nope, you’re on your own. Their only professional responsibility to the public is to be honest and forthright, but even that means, as buyer, you’ve got to know the questions to ask.

So, do yourself a favor and get yourself a good Buyer Broker

In another post I’ll tell you my recommendation for choosing one.

Clue:  It won’t be how others tell you to choose and it certainly won’t be how the current ads on TV tell you to choose a realtor. Nope–Most of those agents have paid for this form of advertising.

Stay tuned to my blog posts and my soon-to-come podcasts….This is important.

***Collleen Kelly Mellor’s book Boomerrrang will soon be ready for purchase. In this, she recounts her husband’s and her actual experience buying a home in North Carolina (while keeping their Rhode Island home); living there, in that trendy retirement town for almost ten years; and why they left. But throughout, she weaves her realtor knowledge, enabling them to successfully self-sell that home, saving thousands. Such shared knowledge will be a prescriptive for others.

Why You Should Want Boomerrrang…..

Going to find your dream home? In another state? Think you’re done with Rhode Island–the winter weather..the high taxes…the poor roads. This is the plan of so many Rhode Islanders bent on finding their own perfect place…their dream home. But often, those plans change as they realize there are no perfect places…that perhaps they just thought the grass was greener elsewhere.

That’s what happened to us.

Some folks choose other countries. I know of friends who moved to Costa Rica, one of the retiree-friendly countries where American ex-patriots (no–not the football fans) live. The problem they encountered? They went back to their home state when the wait list for medical needs made life in CR impossible.

In my book Boomerrrang, I focus on our many year search for our ideal retirement state and what happened when we found it. And I talk about our almost ten-years we lived in Asheville, North Carolina– consistently named “one of the best retirement towns in America” (the undulating mountain shot is typical of the beautiful terrain.)

The good news for you, if you’re not near retirement age? I give great realtor advice if you’re buying or selling a home anywhere.

If you’re not in the housing market, give it to someone who you know is (or will be) in that market, for in this book, I explain what I haven’t seen a lot of yet–the role of realtors…how they get paid….how you can use their expertise (free, in most cases.)

I also tell how you can make your home more market-ready and even how to self-sell, and I alert you to pitfalls that can sabotage.Throughout the book, I weave manageable bite-sized anecdotes of our experiences (many are humorous).

As broker/owner, David Iannuccilli, of ReMax Professionals, East Greenwich said to me, recently: “I think you’re really on to something here” (by my writing this book). He appears on the cover, giving me a positive blurb for the value of my book.

He joins two others on the cover., praising my book–author and Providence Journal columnist, Ed Iannucilli (“Whatever Happened to Sunday Dinners?” and Gary Gallucci, technical writer for Schneider Electric, a man who (with his wife) will soon begin his own search for that perfect retirement home.

Stay tuned–You’ll want Boomerrrang, for I predict:  It’ll save you a bundle. And it’ll arm you, too, in protecting what usually is everyone’s biggest investment–his or her home.

 

What You’ll Get in Boomerrrang!

Boomerrrang begins with a crash.

And then there’s an explosion.

After Paul’s horrific accident, his broken neck, his “death” due to choking, post-surgery, his ending up in ICU, and his frightening cognitive changes, I had simply endured all I was going to take from his very arrogant neurosurgeon. My women friends (some with Southern accents) cautioned me:  “Shhhhh…. Be nice, Colleen. You’ll get far more with honey than with vinegar.”

Well, people had been telling me that my whole life, and frankly, I never found that to be the case. No, my experience has been that women get pushed around if they don’t stand tall and insist on certain things. And so I took my almost 5’9” frame and did just that, and I’m sure that hospital neurosurgeon will never forget my heated delivery that day in that hospital room. Nor will the nurse witness. But I did get the results I hoped for.

That accidental lesson (to speak up against authority) might be one of Boomerrrang’s best, hidden values.

You see, most of Boomerrrang, is an invaluable guide for those buying and selling real estate. Especially those going out of state…and most especially, those going South. But its many tips can be applied to property purchase/sale anywhere.

In this book, I share my knowledge as highly successful realtor and warn of the pitfalls for the uninformed. But I share that knowledge in a fun and humorous manner, by painting vignettes of our search for the perfect retirement home and our 9+ years, living in one of America’s top retirement towns—Asheville, North Carolina.

A famous advertising phrase in the 70’s: “American Express (credit card): Don’t leave home without it” applies to this book.  If you’re gonna buy property (anywhere), strap Boomerrrang to your hip (hence the comical pic of the gunslinger) and use it as a reference.

Or give it to a friend who will benefit from its tips.

Boomerrrang will discuss our many year search, the value of using a realtor’s professional help, how we chose the state…the town…the model we ultimately selected (ours was a studied approach), the pro’s and con’s of townhome/condo ownership, over single standing homes.

I tell how we ultimately sold our retirement home, ourselves, saving thousands, a prescriptive any seller might follow– no matter where he or she lives (even in Rhode Island.)

As Boomers enter their retirement years and become the largest mobile population the United States has ever experienced, tens of thousands will head off into new territories they consider for their later years.

Some will buy; others will rent. Many will be oblivious as to how much risk they take on, by buying real estate unaware.

And some unfortunates may lose lifetime earnings, as with those who buy near Superfund sites, a topic little recognized by buyers for its potential impact.

Boomerrrang will help people avoid that.

Our chosen town, Asheville, will remain a welcoming beacon for many who don’t wish the homogeneity and frenetic pace of Florida or other deep southern enclaves.

It will remain a quirky town that keeps its rustic edge due its proximity to the glorious Blue Ridge/Smoky Mountains.

In other words, Asheville will ever fly under the banner of individualism.

Most of our years there were filled with enrichment and wonder. As such, we recommend Asheville for its diverse character, its artistic community; its commitment to preserving the earth (it’s a green region); its wondrous food; its skilled and handsome medical personnel (even if they’re too few); its gorgeous natural beauty that finally allowed me to know the meaning of ‘purple mountains majesty’ from “America the Beautiful.”

Some say: “You don’t choose the mountains; the mountains choose you.”

If that is true, Paul and I are eternally grateful for being two of the chosen ones.

In conclusion, we loved Asheville for our time there, but in the end, stronger forces (we couldn’t have foreseen) called us back to our home state.

The reasons may surprise you…..

 

 

A Lesson My Aging Mother Taught Me

 

It had been brutally hot that summer. And throughout the state, towns and cities baked in the sun’s punishing rays. My mother’s half acre, bordering the West Warwick/Coventry line, was parched and arid but that didn’t stop her from hiring two sketchy-looking individuals to prune the forsythia bushes on her property. Why? She intended to keep the property meticulously, just as Dad and she always did… even in a summer of no growth.

When I pulled into the driveway, the two men stopped drinking water from the hose and looked at each other as if to say: “The gig’s up,” while I went into the house, asking “Mom, what are those men doing in the yard?” She answered: “I hired them to prune,” whereby I went out, gave them both $20.00 for their trouble and explained my husband and I were moving in that day to help Mom (we weren’t); I just wanted them to think that.

I had great cause for alarm. It had been the summer when an older woman in Little Compton had been murdered, following her hiring of a stranger to paint her home. She worked in a nursery, was loved by many, but that didn’t stop the cruelty that befell her when the man she trusted savaged her. She was easy prey because she was older and lived alone.

I’d already encountered signs of Mom’s diminished capacity.

She’d open her purse, directing clerks to “take out what I owe you, dear“ from a billfold stuffed with money.

I found an envelope holding two twenty-dollar bills she intended to send to the electric company.

My brother hired one of those “I’ve fallen and I can’t get up” companies. A representative came to her home, explained how it worked (she was to wear a device around her neck to press if she needed help, a device that would send a signal to the phone and if no answer, the company would send in the life-saving team.) What happened in real time? She doubtless forgot the reason for the pendant (might have thought it a Catholic scapula), pressed it inadvertently, and left to come to my home.

Back at her residence, all Hell broke loose, with fire trucks, ambulance, and police cars converging.

When police called to ask if I knew where my mother was, I said “Sure…she’s coming into my driveway,” they sheepishly told me they’d barreled through her locked door, thinking to save a senior who was down. It took me two weeks to repair the wreckage.

I took her car away, after she uprooted a fire hydrant, when she swung too wide, collided with it, and dragged it in watery trail.

She’d been lost on occasion, ending up in neighborhoods far afield from hers.

So, with great anguish, two siblings and I removed Mom from her home of fifty years and moved her into a retirement home. Mom was furious…wouldn’t speak to me (the only one of her four children still living in Rhode Island) for two whole weeks.

I stayed away through the hoped-for adjustment period.

When I finally ventured to visit her, I found her socializing with others. More importantly, she’d put a wreath on her door—a sure sign she was acclimating. She enjoyed the varied hot meals the facility provided. She had friends—folks raised in the same era who all shared a similar frame of reference.

It was then I realized: Mom had been lonely in the ten years since Dad died. Oh, she tried mightily to continue on in their tradition.  She had the house painted every few years; she continued cultivating her peonies and rosebushes; she filled the bird feeders.

The neighborhood (much younger now) knew her as “that lovely Mrs. Kelly, wife of the former principal of West Warwick High School.”

But she was merely holding her place in life. ..going through the motions.

Now among her own, she flourished and her community appreciated her, so much so that in the following spring, they voted her “Sweetheart of Greenwich Bay Manor.”

We’d given Mom permission to enter another stage in life.

Colleen Kelly Mellor (colleenkellymellor@yahoo.com), a monthly contributor, taught all levels, from kindergarten through grade 12, for 30 years.