We moved to our new state and present home seven years ago (wow seven years already!) and at the time had good intentions of “fixing up our fixer-upper” right away. We did tend to the outside of the house right away, the inside not so much.

We did not mainly because as they say, life got in the way.

Our new state and home did not seem to greet us very warmly.

Immediately upon arrival Brittni, our eldest and much beloved golden retriever, became seriously ill. She deteriorated in a matter of days to the point where we had no choice other than to “put her down.” The family rallied together, shed some a lot of tears and said goodbye.

Almost immediately we realized hubby’s new job wasn’t all it was cracked up to be and we started wondering why we had uprooted ourselves and taken the big leap. (Thankfully he’s moved on…)

In early fall of 2007 my mother’s breast cancer recurred. Cancer reared its ugly head again, this time with a vengeance and unstoppable fervor.

Months of too many to count back-and-forth trips between my house and my parents’ house in Minnesota began. There were countless doctor appointments, medical consultations, decisions to make, drugs to try, drugs to stop trying, a “what have we got to lose” attempt at chemotherapy, several hospital stays, a trip to Mayo Clinic, and finally the realization we were not going to be able to hold off the terminality of metastatic breast cancer, which culminated in a forced and very brief nursing home stay.

Those were fall and winter months of an almost dizzyingly (is that a word? If not, it should be) frantic and often desperate nature.

By March 2008 my mother, the centerpiece of the family, was gone. Metastatic breast cancer had stolen another life.

Almost immediately after my mother’s death (in reality it was almost two years after, but it felt like immediately) came my diagnosis.

The frenzy that cancer brings returned to my family. This time it was my cancer to own.

Remodeling was the furthest thing from our minds.

As well as dealing with cancer and cancer treatment, we grappled with “remodeling” or reconstruction of a different kind, my bilateral mastectomy and subsequent reconstruction.

I’ve always thought the term breast reconstruction sounds somewhat ridiculous. Reconstruction is something I associate with roads or buildings, not breasts.

On a side note, the term lumpectomy also seems totally inadequate and trivial, making it seem as if you’re talking about removing a little cyst or an annoying pimple…

When my cancer treatment ended and then most of my reconstruction, hubby and I started trying to figure out our “new normal” because that’s what we were told we must do.

We’re still working on that one.

One thing about our new normal is that we don’t put things off quite as much. Hence the back-to-back winter get-a-ways the past two years. Before cancer, such trips were rarely discussed and certainly never happened. There were always too many excuses. You know the ones; no time, no money, too busy, can’t get away.

This year we decided not to put off our remodeling project any longer either.

So several months ago the reconstruction/remodeling began on our kitchen, family room and two bathrooms.

(Yes, it was stressful, but we survived!)

The project started with considerable demolition, in a weird sort of way, not that much unlike my bilateral mastectomy, which might be likened to a “demolition project” of sorts as well.

The house remodeling progressed slowly and in stages, again, not unlike my breast reconstruction which also progressed slowly and in stages.

Finally, the house remodeling ended with a finished product that is rebuilt, a different version of its older former “self.”

It’s far from perfect and is in fact, still flawed, but for now it’s good enough.

We’re done.

Sometimes good enough is just that, good enough.

Now when have I said that before?

Do you put things off less often post-cancer diagnosis?

Have you ever undertaken a remodeling project of any kind?

The "before" kitchen looking even more dated (& cluttered) than I remember

The "after" shot with Ninja looking on

A different angle, Ninja seems pleased.

Generally speaking, it seems we ask this question when bad things happen to us. When good things happen, we tend not to think in quite the same way. Perhaps we think we’ve worked really hard and deserve to have good things happen for us.

This may or may not be true.

More than this though, it’s just human nature. It’s the way we are wired. We tend to whine or complain when things are not going our way.

Just ask any parent. Or teacher. Or spouse. Or frustrated sibling.

After my 2010 breast cancer diagnosis, I didn’t ask why me?

In an odd sort of way, I wasn’t completely surprised about my diagnosis.

That was because my mother had breast cancer, as did two of her sisters. Two aunts on my dad’s side did as well. Breast cancer was thriving in my family it seemed so again, I wasn’t completely surprised about my diagnosis, but what did surprise me was the timing of it.

My diagnosis came some twenty years earlier for me than my mother’s did for her.

I wrongly assumed I at least had more time.

Cancer didn’t allow me the luxury of time.

Cancer was/is more demanding than that.

Cancer forces to you to deal with the here and now whether you want to or not.

Still, as I said, my diagnosis day wasn’t when I asked why me?

I didn’t ask on the day I learned I was BRCA2 positive either. After learning my mother was BRCA2 positive, I knew my chances were 50/50. I pretty much expected to learn my genes were “tainted.” They were.

So when did I ask why me?

It was the day my oncologist said the words, “Based on the facts we now know, I must recommend chemotherapy for you. It’s your best option.”

That was a bad day. That was an ugly day.

That was the day I asked, why me?

And that was the day I demanded wanted answers.

Of course, no answers came, at least not the ones I wanted to hear.

That was the day I felt swallowed up by fear.

Since “that day” was such a pivotal and fearful one for me, I decided to write an Ebook to help other “chemo newbies” get past the fear. I’m hoping to help a few “chemo novices” navigate around that fear a bit because sometimes even a little bit helps.

Promoting and selling an Ebook here on my blog feels like a bit of an adventure for me. I’m not sure where it’s headed, if anywhere.

I’ll keep you posted.

But, back to the why me question…

Of course, no one knows why bad things happen. We don’t know why good things happen either for that matter.

It’s just the way life is, a mix of good and bad.

Sometimes the balance between the two gets way out of whack.

We enjoy the good times when they come and muddle through the bad times when they come.

When bad things happen, we stomp around for a while figuratively and maybe even literally.

We fall down.

Then we get up, dust ourselves off, devise a plan and get busy.

If we’re lucky, we make our way back to more good times.

The good times feel even better.

And once again we forget about asking, why me?

When have you asked why me?

Have you ever felt swallowed up by fear?

If you didn’t, you’re not alone. I didn’t know until my friend Marie, from Journeying Beyond Breast Cancer, pointed it out to me by asking me to join her (and the many others) in writing a blog post on this topic to share today on Mental Health Blog Party Day.

I know, I’m not crazy about that blog party title either, but bear with me…

It’s really no surprise that most people are completely unaware of this particular designation for the month of May. There seem to be a lot of awareness campaigns going on each and every month.

Who can keep track anymore?

Mental Health Month needs recogntion because mental health issues need much more discussion.

Mental health and mental illness continue to be neglected topics.

A dark cloud certainly still hovers over the topic of mental illness. People too often remain silent about it. Families continue to keep secrets.

People are still afraid.

Like so often, once again it seems to come back to fear.

But what exactly are we so afraid of?

Most of us don’t hesitate to seek help when our bodies are suffering, but it’s quite another matter when our emotional well-being is off kilter for whatever reason. People still hesitate to talk about their mental health status. People still hesitate to admit needing help when they cannot cope or don’t feel emotionally strong enough to handle things. People still hesitate to seek out that help. And sadly, people still suffer in silence, often needlessly feeling alone and ashamed.

Yes, we give lip service to the importance of the mind/body connection, but yet many of us do not whole-heartedly embrace this truth.

If we did, the stigma for seeking help regarding our mental health would not be so great.

We have come a long way, but there is a great deal more work to be done.

Some of this work needs to be done in the field of cancer care. This is what I would specifically like to address a bit further.

A cancer diagnosis has a profound impact on one’s mind as well as one’s body. I believe the mind is perhaps even more profoundly impacted than the body. The physical scars do indeed run very deep, but the “scars of the mind” are possibly etched in even deeper.

As we’ve all heard many times before, physical scars heal faster than emotional scars. And cancer can leave some pretty nasty emotional scars.

The emotional well-being of the cancer patient seems to be one facet of cancer care that has been neglected. It’s true, this is beginning to change, but it’s not changing nearly fast enough.

Statistically, a high number of cancer patients suffer from depression at some point following a diagnosis, sometimes even many years later.

And once formal treatment ends, one is expected to be finished with cancer. One is expected to tuck it away (where exactly are we supposed to tuck it anyway?) and get on with things.

This isn’t quite so simple for a whole host of reasons, too many to list here.

When formal treatment ends, very few cancer patients are given any type of “survival plan.” I sure wasn’t. Yes, there are follow-up appointments for a designated amount of time with an oncologist, but often that’s it.

Most patients are simply sent on their way. It’s implied one should just get back out there and figure out your “new normal.”

Most of us muddle through and do exactly this, or at least we try to. Most people can muddle through and get by on their own, but some cannot.

What happens to them?

I was never really asked about my mental health during cancer treatment and certainly not when it ended. Oh sure, I was often asked, how are you doing, Nancy?

But that was about it.

I never felt as if the “door had been opened up wide enough” for me to actually “walk through it” and explain how I was truly feeling and coping.

So I didn’t explain.

Not addressing the emotional well-being of the cancer patient is neglecting a crucial piece of treatment, in my opinion. I believe all cancer patients should meet at least once with a mental health professional. More times would be even better.

I also believe cancer survivorship should be an important phase of cancer treatment.

We are all fragile human beings and we know it.

Perhaps this is why we are so hesitant. Perhaps this is why we remain fearful.

We can all play a role in helping to remove the dark cloud that still hovers over mental illness and mental health issues in general. We can all become more aware, more knowledgeable, more open-minded and less judgmental.

We can all be a bit more understanding and a whole lot more compassionate.

Perhaps then the fear will begin to fade as well.

Do you feel there is still a dark cloud or stigma attached to mental illness?

Were your emotional needs addressed during cancer treatment?

Have you every suffered from depression or any other mental illness?

Mother’s Day 2012 also marked another very different kind of milestone.

In my neck of the woods, Mother’s Day marks the annual Susan G. Komen Race for the Cure at Mall of America® event in Bloomington, Minnesota.

This year the event was even more celebrated and even more publicized because it was the twentieth anniversary of this particular race from this particular “starting line.”

So it’s no surprise there was an extra dose of “party atmosphere” mixed in with the event this year. More racers were expected, more potential dollars were waiting to be raked in, more ads were televised and, of course, more pink was on display or worn everywhere one looked.

It was also the perfect day and event for Komen to do more much badly needed damage control.

After following the recent well-publicized mishandling of the funding for Planned Parenthood and the fall-out that is still continuing, I’ve been wondering if this particular Mother’s Day race would be impacted. I‘ve been wondering if the numbers would be down. The numbers have been down a bit elsewhere. Historically, this particular race at the Mall of America is one of Komen’s biggest money-producing races in the nation.

After all, doesn’t everyone love to run or watch a race and then go shopping?

So after all this wondering, I was eager to tune into the local late Sunday evening news because I knew the story would be covered extensively just like last year. I mean Mother’s Day and the Susan G. Komen Race for the Cure®, what could be better for generating some feel-good positive vibes for your Sunday evening local news television viewers, right?

Feeling anything other than all warm and fuzzy, would almost be like being anti-motherhood, right?

As it turned out, I was not disappointed. There was plenty of coverage.

Unfortunately, from my vantage point, the biased coverage was another perfect example of the media’s continuing reluctance to tell the whole Komen story.

There was no mention of Komen’s recent public relations problems. There was no mention of the fact the number of race participants was down this year as recently reported by the Minneapolis Star Tribune. There was no mention of any discontent whatsoever.

Wasn’t this a blatant omission of an important piece of this particular news story?

I think it was.

Even after all the recent fall-out, Komen’s high placement on the pink pedestal seemed to be pretty secure around here.

Once again, there sat the smiling anchors oozing admiration and praise for the Susan G. Komen Foundation and for this wonderful annual feel-good event. It felt as if Mother’s Day and breast cancer were both being used for shameless self-promotion by Komen and the news station.

There was a lot of “back patting” going on along with all that smiling.

However, I wasn’t smiling. I wasn’t feeling all warm and fuzzy; no, I was feeling quite the opposite. Once again I felt fidgety, irritated, even angry, but mostly I felt sad.

Why?

Because although this event was once again pretty successful for the Komen Foundation, for women like my mother, not so much.

Metastatic breast cancer does not seem to garner much attention from Komen. Those living with metastatic breast cancer do not receive much of the support or many of the dollars raised from all this racing.

My mother, all the other women (and men) lost to this disease and those presently living with metastatic breast cancer don’t seem to be helped much, if at all by all the dollars raised.

This is terribly ironic, but mostly terribly sad. It’s also unacceptable.

These words were taken directly from the official visitor’s site for the Bloomington Convention and Visitor’s Bureau:

“This May, the Susan G. Komen Race for the Cure at Mall of America® will bring together competitive runners, wheelchair athletes, walkers and breast cancer survivors. By running, walking or rolling in the Race for the Cure Minneapolis, thousands will help raise funds for breast cancer research.”

Did you notice those last three words, breast cancer research?

Hmm…

Kind of makes me wonder if even the Bloomington Visitor’s Bureau has been duped along with so many others.

There is nothing wrong with wearing pink. There is nothing wrong with walking or running in races. There is nothing wrong with seeking out camaraderie with other survivors. There is nothing wrong with wanting to do something.

No, these are all admirable things and I admire all the participants in this and other events like it.

However, I do believe the Susan G. Komen Foundation is in the wrong here.

Why?

It is wrong when you define your mission to be ending breast cancer and yet for the last two years you cut the proportion of fund-raising dollars spent on grants to scientists working on this very thing.

In 2011, Komen allocated 15% of its donations to research awards. This is a drop from 17% allocated in 2009 and 2010.

Komen slashes dollars spent on research (already a minuscule amount to begin with) despite the fact that dollar amounts being donated have been rising (until the Planned Parenthood fiasco).

Something is seriously wrong with this picture.

A cure without research will never happen.

Prevention without research will never happen.

Better and less harsh treatments without research will never happen.

In addition to the small amounts being allocated to research, Komen has also come under criticism for what research projects it does fund.

Two wrongs definitely do not make a right.

It’s not only important to do research, it’s important to research the right things.

Komen’s main focus continues to be on education/awareness, but even here they seem to be out of touch with present day recommendations regarding mammograms and breast self exams. Komen seems to be suffering from “science denial-ism.”

I’m slightly encouraged because people are beginning to wake up to the reality of Komen’s numbers.

People are beginning to be dissatisfied with the shockingly dismal amount of dollars allocated for research. People are beginning to demand better accountability. People are beginning to not settle.

However, beginnings are merely that, beginnings.

Now we need to move on to meaningful action and meaningful change.

Now that would be something worth celebrating.

Do you choose (or have you ever chosen) to participate in Komen events? Why or why not?

Are you satisfied with the dollar amounts Komen allocates for research?

Do you feel Komen offers too little support for those living with mets?

Do you believe an important part of the news story was  omitted here?

This is not to say you shouldn’t have trust and faith in your team of medical care providers, but you do need to feel free to speak your mind, have your opinions heard, ask questions, stand up for yourself and ultimately make the final decisions.

Perhaps most importantly, when something is being discussed and you don’t understand it, ask and then keep asking for clarification until you do understand.

Actually doing these things is much easier said than done, especially when faced with a serious diagnosis like cancer.

When you receive a cancer diagnosis, you are initially in a state of disbelief. You feel as if the words “you have cancer” must be describing someone else. I remember quite vividly the afternoon I received the phone call confirming my diagnosis and the disconnection I felt to those words.

I couldn’t believe they were describing me. It seemed impossible.

After receiving a cancer diagnosis, a person is in a very vulnerable state of mind, to say the least. Yet during this period, you are suddenly faced with the harsh reality of seemingly countless appointments and procedures.

In addition, you are trying to absorb volumes of new information while also attempting to make life-altering decisions. At times it all seems just too overwhelming because it is. 

Yet this is the time when you must advocate for yourself most diligently.

In order to do this effectively I believe one must take the time to step back, breathe, slow things down a bit and think things through.

Too often decisions are rushed.

While this need to hurry up, get the cancer “out” and just get on with it is understandable, it might not be the best strategy. Of course, taking too long isn’t good either, but generally it’s ok to take some time.

Usually a cancer diagnosis is not an immediate medical emergency, even though it certainly feels like the emergency of a life time. My doctors kept reassuring me most cancers have a “window” of six weeks or so. During this time frame, tumors don’t generally change enough to impact decision making.

Therefore after a diagnosis, there is usually time available to absorb, process and adjust to your new reality. During this period of days or even weeks one can mentally prepare, gather information, compile lists of questions and hopefully put together a plan.

By taking this extra time, you will undoubtedly become better informed, feel mentally more prepared and ultimately feel more empowered to make better decisions.

You will begin to feel more in control of your medical care and your life.

It won’t be easy. In fact, at times it will seem undoable.

Ultimately, it is your life. It is your cancer. It is your body. The final choices are yours to make.

Isn’t this really what being your own best advocate is all about?

Did you feel rushed to make decisions after your diagnosis?

Do you find medical self-advocacy to be difficult? If so, why do you think this is?

When did/do you feel most over-whelmed?

More thanks to those who left comments. Your feedback is always very important to me  and, of course, motivates me to keep plugging away at my writing… If you shared about your “diagnosis day,” again, thank you. Sharing helps everyone. 

Now here’s part two. 

April 29, 2010

Finally, the voice deep within me which decides enough tears have flowed for now, summons me to stop and I pull myself together. I collapse on the sofa, worn out and ashamed of myself for crying more today than on the day Mother died. On top of everything else, I must be shallow and self-centered. I must be a bad daughter.

About half an hour passes and I hear the back door open. Hubby enters the house, reluctantly I’m sure; unaware yet of what he must deal with tonight. Elsie and Sophie immediately run to greet him and he knows his answer because I do not follow. I wonder if he wishes he could turn around and leave. I would like to.

He wisely takes his time changing clothes, allowing me a few more minutes to be alone. I mindlessly turn on the ABC Evening News with Diane Sawyer and I am envious of her cancer-free life. I am envious of all who are leading cancer-free lives. Ironically, one of the news stories is about some sort of possible cancer vaccine, one for prostate cancer, not breast cancer. It’s a potentially major breakthrough, perhaps to be available in five years.

“Wouldn’t you know it, naturally the breakthrough will come for a man’s cancer first,” I say out loud to no one.

Hubby comes into the family room, slowly sits down beside me and gently puts his arms around me. He says nothing, there is no need. He is now a man with a wife who has “a” cancer. His old life is over too.

We don’t get to sit around for very long. Cancer doesn’t allow for that. In the morning we have our first appointment with Dr. Namboodri, my oncologist. It seems impossible I need such a thing.

April 30, 2010

After a night of little sleep, I’m not sure I will be able to keep myself together, but miraculously somehow I do. I must. I have to pay attention.

The nurse who checks us in is named Jo. She is almost annoyingly nice to me and then I realize she is an oncology nurse. She deals with cancer patients, even dying patients. She has to be nice; it’s part of her job description. She realizes I’m a “fresh one,” newly diagnosed. “Cancer” might as well be stamped across my forehead.

Waiting in the exam room feels like deja vu. Just like Mother. It’s happening again, just like Mother. Only this time it’s me. Like usual, the room is tiny and poorly ventilated. Unfriendly fluorescent lighting glares and buzzes. Sitting on my chair, I fidget nervously because it seems if I sit too still I will more easily crumble.

When Dr. Namboodri finally appears we are openly relieved. He has dark hair and wears dark clothes and dark glasses. After studying him briefly, as well as his certificates hanging on the wall, it is obvious he is from a different corner of the world and I wonder how he ended up in Wisconsin. All I want is for him to be competent and knowledgeable. Compassionate would be a nice bonus.

Almost immediately we realize he is all of these things and more. He is calm and serious as he listens to my now familiar story about how I ended up here today. He listens attentively, asks questions about family history and carefully writes down my answers as if I am giving him important pieces to a puzzle, which I guess I am. I am the puzzle. Next he listens to me breathe and examines my lymph glands.

“I don’t feel anything evident in your lymph glands so your cancer probably hasn’t spread,” he says.

Hearing him call it “your cancer” sounds out of place. It forces me to realize this cancer indeed “belongs” to me. Such ownership feels unimaginable.

I don’t want to own my cancer.

“I don’t think your chest pain is related. I think you did injure yourself raking and it’s unrelated to your cancer,” he adds sounding like he knows what he’s talking about, so we believe him.

“Don’t I need a chest x-ray or scan of some kind,” I ask him. (How much proof do I need anyway?)

“You had the CT in the ER, a mammogram, an ultra-sound and your biopsy,” he reassures me. “Nothing else was picked up.”

These are the best words I hear today.

At the conclusion of our appointment, we all concur it is essential for me to have the blood test to determine if I carry the BRCA2 gene mutation like Mother. If I have the mutated gene, a bilateral mastectomy will most certainly be recommended. If I do not have the gene, there may be other options.

I don’t like any of the options. It’s a joke to call them such. These are not options. They feel more like traps and no matter which one I choose, I will be unable to “escape” from it.

Surprisingly, I’m still calm. I guess I’m in “cancer shock” or something. I no longer fear the words bilateral mastectomy so much. What I fear are words like stage IV, untreatable, unclear lymph nodes, and chemotherapy.

And oh yes, dying.

How did you feel when you met your oncologist for the first time?

Were you offered many options at the time of diagnosis?

Has your cancer diagnosis ever made you feel trapped?

I decided this might be a good time to share a chapter of  the book I’m working on. I feel hesitant to share something so personal, but it also feels right. 

So, here’s part one of  ”You Have ‘A’ Cancer.”

Today is April 29, 2010. It is the day I wait for the biopsy result which will determine my future. So much is riding on one little phone call. I keep busy all morning long, confident no news will be delivered early in the day. Doctors make such phone calls at the end of their work day I tell myself. Bad news will be delivered late in the day. It will be put off because who wants to deliver bad news?

I busy myself with more cleaning, more laundry and more journaling, but mostly more waiting. As the day goes by, I start feeling more and more on edge. It must be bad news.

For much of the afternoon, I lie on the sofa and attempt to settle in with my latest Grisham novel, but I only pretend to concentrate. The only storyline I can concentrate on is my own. My dogs, Elsie and Sophie, wait with me.

I decide to give the clinic until 4 o’clock to call me and then I will call them. Minutes tick away on the large round clock behind the TV, but no call comes. Four o’clock passes. I wait another ten minutes. Those minutes pass as well and I determine I’ll wait just five more.

Finally, I realize I cannot wait any longer or everyone at the clinic will be leaving for the day and I will be forgotten. I muster up enough courage, make the call and leave a message with the receptionist who promises to deliver it to my doctor right away. Minutes later, my doctor’s nurse calls and announces, “Nancy, your doctor isn’t in this afternoon. I don’t have your results. I’m really so sorry.”

“What? Well, I’m sorry, too, but this is totally unacceptable. You told me I’d be called today,” I tell her as my heart starts pounding far faster than it is supposed to and anger starts to rise up from somewhere inside, but I know I cannot let it burst out of me. You cannot allow yourself to become too angry with people who are supposed to be on your side. Plus, it’s not the nurse’s fault.

So, I take a deep breath and calmly say, “I have an oncology appointment already scheduled for tomorrow morning at 9:10. You cannot expect me to walk into that appointment without first knowing my results.”

“Oh, I know. You’re absolutely right,” the nurse responds kindly. “I’ll see what I can do.”

Immediately I feel calmer and confident she will come through with some information. Nurses like her exude confidence. Nurses like her understand. I return to the sofa, but am unable to sit. I begin to pace around the room.

About half an hour later, my cell phone rings. I am afraid to answer it and for an instant I think about pretending I am not available. If I don’t answer it, I cannot receive bad news today. I take a deep breath, grab my pen and paper and decide to push the accept call button. I might as well get it over with. After identifying himself and making sure he is speaking with the right person, this unknown to me doctor delivers the words I somehow knew were coming, but am still unprepared to hear.

“Well, there is a cancer there, your biopsy tested positive,” he tells me in a voice I find to be too calm, too detached and too familiar with giving such news. I wonder why he calls it “a” cancer, not just cancer, like it really matters.

“What else can you tell me?” I calmly ask him while thinking my question sounds completely ludicrous. At this moment in time, what else matters?

“Well, that’s all this report tells us really.”

“I don’t believe that,” I snap back at him. “There has to be more.”

He annoys me. I know he is doing me a favor, delivering this news to a patient who isn’t even his.

“There must be something more you can tell me,” I plead. For some reason I don’t trust him and feel as if he’s not telling me everything. I have no idea what these things might be.

“The only other thing,” he finally concedes, “is that it says here you are grade one.”

“Well, that’s at least a bit of good news,” I respond probably sounding more than a bit desperate.

Almost unbelievably he announces, “No not really, it’s the least important piece of information when we stage cancer. Tumor size and number of lymph nodes involved are far more important pieces to the puzzle than grade.”

My displeasure with this guy grows, even though I know he’s probably right. Perhaps I am being unfair and judgmental, but I want to scream at him, what is your problem? Instead I keep pressing him for something further, I’m not sure what.

After I have squeezed all the information I will get out of him, I apologize for putting him on the spot and being so short. However, I don’t really believe he deserves an apology and I wonder if he knows I am insincere. I begin to tremble slightly. Our conversation is concluding and my voice which thus far I have been able to keep steady, begins to waver.

“Are you OK?” he asks me, hearing me start to cry.

 No you asshole; you just told me I have cancer!

These are the words with which I want to lash out, but of course this is impossible. Even he seems to suddenly realize his last remark sounded insensitive because his voice immediately softens.

“I know you’ve just been told you have cancer and it’s understandable for you be upset,” he says suddenly filled with concern. His compassion comes too late. I’m done with him.

We say our goodbyes and hang up. He probably goes home to have a nice quiet dinner with his wife and kids thinking no more about cancer today. I, on the other hand, start sobbing as I absorb the reality of my new life, for it feels my old life is over. Now I have cancer and am forever changed. I feel alone, angry, terrified, cheated, guilty, jinxed, unfairly treated and just plain miserable. I hear myself weeping and feel my body rocking back and forth, but it seems as if I am observing someone else’s life, a person I do not recognize.

I am alone, but not totally. Elsie and Sophie sit next to me and wonder what is wrong with me. Sophie puts her front paws up on the sofa and tries to lick my face. Elsie sits as close to me as she can get, wiggling her body as she tries to nudge Sophie out of the way. They both somehow sense the seriousness of the situation. My dogs are the only ones with me to witness first hand my ugliest moments.

They are familiar with this role, seasoned veterans of sorts, consoling me only months earlier when I grieved for my mother who passed away from, of all things, breast cancer.

Perhaps being alone with my dogs is for the best, they will never reveal the secrets they witness on a late afternoon in spring.

How did you get news of your diagnosis?

Have you ever wanted to lash out at a doctor for any reason?

Who helps you when you receive bad news?

This was my planner entry "that day."

This time it was a mostly pleasant one.

A couple of weeks ago hubby looked at me and said, “When was the last time you had a haircut anyway?”

And this question was coming from the man who would probably prefer I still wear it long, straight and flowing …

“I don’t remember,” I answered. “I guess it must be over two years ago, you know, before cancer.”

Upon examining my hair more closely in the mirror over the next few days after that question, I decided it might indeed be time for that next big step. In fact, it was past time!

I needed a haircut!

The day had finally arrived when I had re-grown enough hair to warrant a trip to the salon, but now the only question was which one to go to? I found myself asking…

Do I go to an actual beauty salon?

Do I go to the local Great Clips or Cost Cutters?

How about the mall?

Or do I drive a greater distance to go somewhere more “reputable” because clearly I needed help?

Do I return to the tiny salon I visited when wig shopping that hot July day where they treated me so kindly even though I couldn’t decide on a wig, left empty handed and cried all the way home?

So many choices…

I ended up picking the same old chain salon I used to go to.

Once I arrived in the parking lot the next question popped into my head.

You know the one, right?

Do I tell?

Do I mention this is my first haircut in over two years? Do I ask for my old stylist? Do I tell the stylist I had chemo recently or do I keep quiet?

As it turned out, my old stylist wasn’t there anymore.

I decided to keep quiet.

Well, that didn’t last long; no surprise there!

The stylist made some remarks about my fragile locks (yes they’re more fragile now) and suddenly I found myself blurting out, “I had chemo recently and this is my first haircut in over two years.”

Why did I tell?

I have no idea.

Maybe it was because the place wasn’t busy and no one was sitting next to me. Maybe it was because the stylist seemed kind. Maybe it was because she mentioned she, too, had trouble styling her thin hair. Maybe I needed an excuse to help explain my shaggy locks and nervous demeanor about a haircut.

Maybe I just can’t keep quiet!

Most likely it was because I told her I was struggling to figure out what to do with my new head of hair that’s lacking more than a bit of its old luster.

I wasn’t one of the “lucky ones” whose hair returned better than ever when it regrew following chemo.

I wonder if anyone actually regrows hair that is better, or if this is another one of those myths out there…

It sure didn’t happen for me.

Anyway, the very kind and soft-spoken stylist and I proceeded to have a lovely conversation. We discussed cancer, spring, hair, dogs, and other stuff.

The cancer part didn’t take over the entire conversation and that felt nice.

She offered me a few hair styling tips that I probably won’t ever try, but … you never know.

The main thing is –

I had my first post-chemo haircut!

I reached another milestone!

Still, I won’t be giving up my caps any time soon.

Did you experience chemo-induced hair loss?

If you did, do you have your hair back yet and if so, is it different now?

If you had chemo and did not lose your hair, how did people react?

If you did not have chemo, was your hair still affected by your treatment?

If only there was an on and off switch one could flip at night guaranteeing uninterrupted slumber…

Whenever I awaken during the night with troubling thoughts, I do what I always do; I determine I will write about what’s on my mind.

Hence, I decided to write this follow-up post. As for the various cancerversary dates, I’ll share about those later.

I was a bit astounded by the response to that particular post which addressed the sense of loneliness and isolation so often felt by those living with metastatic disease. That post generated more traffic than any other previous blog post.

I was very moved by the response, as well as by the heart-felt comments. I felt compelled to share some of them here.

The comments left offer more proof that it is indeed true the mets community far too often feels invisible. They offer more proof of the pink ribbon culture failure to serve the needs of those living with metastatic disease. They offer more proof this segment of the breast cancer community longs to be better heard and better understood.

How can I not share?

How can we not listen?

Please read a few of the incredibly candid comments and see if you, too, are not moved.

 I have MBC with mets to my spine and live in constant fear of the unknown.

When a disease is celebrated, something has gone terribly awry. How exactly do we celebrate metastatic disease? It’s the mirror no one wants to look at for fear their reflection is there. Even the data collectors count only the diagnosed and the dead, never those living with it. Exactly how more invisible can it get?

Within our sisterhood, we are ostracized. We cannot go to support groups because we scare the early stage women – we are their worst nightmare; forever in treatment until we die.

We are subjected to comments and questions, sometimes ones that imply we have done something wrong to be Stage IV.

It hasn’t even been a year yet since I felt that lump and thought “no problem, breast cancer isn’t fatal anymore”.

Personally I’ve come to hate October and the constant bombardment of media ads which only portray…early stage disease success stories.

I was diagnosed with metastatic breast cancer at the age of 29. I am grateful for the amazing support network of family and friends that I have. However, this disease – particularly for those of us that are very young – can be extremely isolating. It has been very difficult for me to relate to early stage survivors – as they cannot possibly understand what living with mets is like. It’s also sometimes hard to relate to women with mets that are twice my age – they were able to have children and raise them – they were able to have a career – move into their dream house – have many years with their spouse, etc.

Your words really bring home the ironic aspects of pink ribbon culture: it fosters this sense of ‘you’ll be fine’ if you’re diagnosed, but turns its back on you when you’re not.

Thank you, Nancy, just thank you for a… post that illustrates so well the divide between the rah-rah survival sisterhood that the public persona of breast cancer has become and the reality for those of us living with metastatic disease.

I’m living with metastatic BC and I grieve daily for my kids and for my lost future. Having MBC is like being in a tunnel that keeps getting smaller as your options narrow. I despise the perky positive messages put out by fundraisers about how we are going to cure cancer, not likely since only 2% of research funds go to metastatic disease. How can you cure something when you don’t know what causes metastatic disease and how to stop it? Since 30% of women with primary BC go on to metastatic disease it is in everyone’s best interest to talk about it more and push for better research.

After reading the above comments, as well as all the others, it’s more obvious to me than ever this feeling of isolation is very real to many living with metastatic disease. It pains me to think this is true, but until we listen to the voices of those living with metastatic disease and acknowledge this reality, we cannot change things.

And things must change.

If you are living with metastatic disease, do you attend (or have you ever attended) support group meetings? If so, have you ever felt ostracized in any way?

Do you have suggestions on how to decrease the sense of isolation many feel?

Do you feel breast cancer is almost “celebrated” in pink ribbon culture?

If you’ve had a breast cancer diagnosis, you have certainly thought about metastatic breast cancer, probably way more than anyone in your circle of family and friends realizes.

If you have observed a loved one suffer and ultimately pass away from metastatic breast cancer, you understand a whole lot, but still you don’t really know.

Until it happens to you and your body, you can’t really know.

This is true of many things in life.

Still, we don’t have to experience something first hand to be empathetic, speak out, become enraged or feel compelled to do something about it.

And I’m feeling more than a little compelled today.

Why?

Well, there is always the experience of my mother in the back of my mind. The memories are always there. Time fades their harshness a little, but only a little. There is much to remember…

On top of my own memories, it’s something else. I’ve been greatly moved by words some “sisters” living (or who lived) with metastatic breast cancer have written.

I’m reflecting on a compelling post I read written by Ann, author of the blog, Breast cancer?… But Doctor I Hate Pink! The post was powerful to say the least. I hope you’ll take a few minutes and read it.

Ann describes how her life feels surreal, almost as if she is living two lives. She concludes her post with these thoughts about living with mets:

“It used to be that cancer took over and we died quickly. Now, we are able to beat it back for a year, for two, or five if we are lucky. But, there is no cure, and everybody eventually does die. This means this new generation of cancer patients must live in a strange kind of purgatory, our brains split between life and death. 

It’s an odd feeling to mourn your life while you are still living it.” 

My friend Rachel, author of  The Cancer Culture Chronicles, wrote an equally compelling post about a year before she passed away called The Well Trodden Path in which she described the incredible sense of isolation that seems to accompany a metastatic diagnosis:

“Living with metastatic breast cancer is a strange  and lonely place to be. Because now there are no real milestones, except the one that no one wants to talk about. There is no definite end to treatment, unless it simply stops working, in which case you move onto the next option. If you still have options.”  

Shelli, who blogs at The Dirty Pink Underbelly, writes about her intense sense of isolation and struggles with depression:

“It hit me this week how awful it is to be in the same rooms all the time and never go anywhere. It’s taken nearly three years, but I’m finally stir crazy. These past few weeks of being sick, the past month or so of not being able to drive myself anywhere have finally made me feel trapped.” 

The fact that these women, as well as so many others, feel/felt alone and isolated is heart-breaking and to me, unacceptable.

This needs to change.

No one living with metastatic breast cancer should feel isolated or abandoned, especially by those who proclaim to be their supporters.

Before this can change, we must ask why do so many feel this way?

Why does it so often seem this segment of the breast cancer community is forgotten?

Why do so many living with metastatic breast cancer feel invisible?

Of course, the diagnosis of a disease that may well be terminal is isolating enough, but I don’t think this is the whole story. I don’t think this is the only reason for the loneliness.

In my opinion, pink ribbon culture is in large part responsible for this feeling of isolation so many of those living with mets feel.

Undoubtedly, the pink ribbon culture has been a vehicle for a lot of good. It has helped to bring breast cancer out of the closet.

However, as almost everyone knows, there is also a lot of discontent today about how the pink ribbon culture has failed women.

Perhaps this lack of attention to those living with metastatic breast cancer is the greatest failure of all.

Pink ribbon culture seems to prefer to primarily portray the feel-good stories. The media has certainly perpetuated this fairy-tale-ending type portrayal. It seems every time you turn around another celebrity is putting a “happy face on breast cancer.” In and of itself, there’s nothing wrong with this.

Who doesn’t love a feel good story?

I like them too. I prefer happy endings.

But the feel good stories must also be balanced with a dose of reality; the reality that those living with metastatic breast cancer are probably not living the “hooray pink” life-style. The reality that those living with mets will be in treatment for the long haul and the harshest reality of all; that 40,000 women and men still die from metastatic breast cancer every year.

Why does pink ribbon culture not more fully embrace those who are in greatest need of their support?

It seems we have all failed here. It seems we have all been too quiet.

It also seems to me, until we all more fully acknowledge, embrace and include those living with metastatic breast cancer, we have failed and failed miserably.

As Gayle Sulik, author of Pink Ribbon Blues, surmises:

 “Cancer is not a ribbon, a screening test, or a leisure activity. It is not a sassy t-shirt, a proclamation of survivorship, or a gift worth giving. It is…a disease process that ignites what is all too often a cycle of medical surveillance and interventions…For too many, it will be the eventual cause of death…They deserve better than this, and so do we.”

I say it’s time to bring metastatic breast cancer “out of the shadows.”

Only then will those living with it begin to feel more visible, more heard and ultimately, a little less alone.

Finally, if we are not aware of metastatic breast cancer and the needs of all those living with it, we are not aware of breast cancer at all.

Do you think “pink ribbon culture” intentionally or inadvertently excludes those living with mets?

If you are living with mets (or know someone who is), do you (or do they) feel isolated or forgotten at times? If so, how can others help to change this?

 Photo use with permission via Ronnie Hughes & Being Sarah