Wednesday, December 21, 2011

Bruised, Battered, Thankful

This is not the year-end post I had envisioned, but as we know, life doesn't always play out the way we'd like it to.  It can change in a matter of seconds by something we never even see coming, like a cancer diagnosis or sometimes, by a force we do see, but simply can't avoid quickly enough.

Which is what happened to me and my family this past Sunday while on our way to a tree farm to cut down our own Christmas tree.  It's sort a tradition, started about four years ago, only this time we never got there.



While driving on a narrow, curvy two-lane road with a slight incline on our side and a lake on the other, from around the next bend came a car already swerving out of control.  Like something from a chase scene in a bad movie.  Very surreal, watching it speed side to side, heading toward the wire guardrail on the lake side, thinking we can get past this, only to realize that was not to be, as the 17 year-old driver spun the steering wheel and careened straight into us.  With no where to go, we took the impact.

I remember seeing the front of his car crash into ours, the unforgettable sound of crushing steel, the white of an airbag, then silence for a split second before the sound of my children's cries.

The four of us walked away.  My children, thankfully, completely fine with a new appreciation of mom and dad's fanaticism regarding seat belts.  My husband and I took more of the force, being in the front, but despite bruises and the sorest ribcage one girl could ever imagine, we're okay.  We are thankful.  It is clear how much we could have lost in those moments.



There's more I want to write, but I'm tired and my thoughts are scattered.  I just wanted to touch base with our cyber community and wish everyone a wonderful holiday season and an even better new year.

I want to thank you for sharing my stories and experiences in 2011, especially being there when I had to say goodbye to my boy, Goliath.  Ironically, the car we just lost was purchased two months after getting Goliath, with the intention of driving around with our new big dog.  Weird to think we've lost both in such a short time.  In 2012, we'll need to figure out how we are more than the sum of a car and a dog.

Perhaps there's some greater meaning to it all, but right now, I can't imagine what that is.

I don't want to be a Bloggy Downer, that's not my intention or how I feel.  I'm grateful we're all still here, getting ready to welcome a new year of wondrous possibilities.  I look forward to catching up and continuing to read all your blogs.

I'm sure I'll have an interesting thing or two to write about next year.  Upcoming visits with my oncologist and breast surgeon, not to mention, the possibility of saying goodbye to my plastic surgeon.  Assuming neither implant shifted upon impact the other day.  Things are feeling a bit off.

Stayed tuned.  I'll see you in 2012.

Be well and stay safe!!


Thursday, December 8, 2011

A Tale of Tattoos

My intention for this post was to solely be a reflection on the events of last Tuesday.  Tattoo Tuesday.  But, that was before reading Being Sarah's post, The N Word.  Sarah has inspired me to screw self imposed word limits and offer more description with regard to the actual procedure, not something I'm all that comfortable with, but here goes.

For all the ladies contemplating tattoos as part of your reconstruction...This one's for you.

I went into T-day with unanswered questions, anxiety and zero expectations about the procedure I was about to undergo.  The only thing I carried with me was the desire to do it.  I had been living "unfinished" for quite a while. The whole two & half years since mastectomy, I suppose.  I finally felt ready to move forward.  I wanted this to improve what I had, but I was unsure how tattooing nipples and areola could restore what was taken away. Wouldn't it just be more of the same?  Fake?  Reconstructed, not real.

I went alone to my 1:30 appointment, as if there's some honor in carrying the load myself or maybe, by going alone I could believe it was just a "simple procedure."  That it was nothing, not a big deal, but I was only fooling myself, because, of course, anything having to do with reconstruction, both physically and emotionally, is a huge deal.

Stepping off the elevator, down the hall from the operating room where I had my mastectomy, two reconstructive surgeries, and nipple reconstruction, I realize I have history here, in this building.  Whether I like it or not.

When I check in with the receptionist she hands me a Consent for Surgery form.  I'm surprised it's needed for tattoos. I look at her and ask, "Is that what they're calling it here?  Surgery?  That's not what they say in the back alleys."  The receptionist said I was funny.

I sat down and tweeted my solo status and almost immediately, Sherpas Nancy's Point and Jodyms virtually sat with me and I feel less alone.

A nurse I know takes me into the exam room, where the big chair looms in the middle, under the bright light.  She describes the procedure.  I sign more forms.  My surgeon walks in. He inspects his previous work since he hasn't seen his nipple creations in over six months.  He then takes a beloved Sharpie and measures for position and size and sends me to the mirror to check it out.

I've paused here in writing, because how do I describe what I saw?  Two large dotted circles surround little handmade nipples which bear little resemblance to the real thing. How is this going to possibly work?  I really don't know.

I say the position is fine, the size, too big...porn star big.  Well, that's what I think, but I say it with my opinion omitted.  We agree he'll stay well inside the circle.

He shows me the ink colors he'll use.  A trio of pale, peachy browns and it's all very surreal.  Should he numb it all before he starts?  I don't know.  I still don't have much feeling there.  He pokes around a bit and to my surprise, it hurt.  Just goes to show you how long it's been since my mastectomy.  Time enough for nerve endings to regenerate.  I think how happy my breast surgeon will be to hear that news.  He usually asks if any feeling has returned.  Now, I can tell him, a big yes to tattoo needles!  Not much else though.

I'm numbed up then, but even so, the procedure is uncomfortable. A lot of pushing, pinching.  The tool used is loud. My surgeon and his nurse stand on either side of me trying their best to be normal.  Like we're all just hanging out in the afternoon looking at artwork.  As if the act of tattooing areola is something ordinary, when it's really the opposite...extraordinary.

When it's over, I glance down to see two large, reddish circles staring back me.  I'm reminded of my youngest son's newest obsession.  Drawing funny faces filled with big circle eyes and noses, all put together in a collection he calls, The Book of Funny.

Sigh...I have become a living, breathing canvas for The Book of Funny.  Maybe in the big scheme of things, among all the steps along my breast cancer road, tattooing is kind of funny.  Maybe a book showcasing all that's funny, is exactly where I belong.



Somewhere in my brain I hear the nurse say the redness will fade in time to reveal the true pigment and now I'm finished.  I ask my surgeon if this is the end for the two of us, after more than two years.

"That's up to you."

Thanks.  It's been up to me right from the very first day, with the detection of "something" on a routine ultrasound and now I'm here to finish it, but in the end he tells me to come back early next year offering one last lingering thread to grasp before snipping.  Before pushing me out of his nest.

I head home, keenly aware of pain and bandages across my chest one more time.  The next morning, I'm sad to see red, crusty gauze in the mirror.  I've lost count the number of times I've peeled away bloody bandages before showering.  Here was yet another.

I steel myself for the picture of funny I spotted the day before, big red circles laughing back at me.  The bandages come off easily.  There's no blood.  Just pigment, now a dull red, less menacing and I see for the first time the reasoning behind the size.  My scars are hidden behind the tattooed areola...and it all makes sense.  I feel like I've been let in on a secret.  Something all the surgeons always knew.  Tattoos are called a finishing touch for good reason.  I'm surprised.  I never expected to actually like it, but I do, more than I ever thought possible.

Adding tattoos brought about a vision I hadn't seen in a very long time and I'm buying into it.  I'll take it.  I like looking at what's been created, reconstructed out of nothing.  Just some stretched muscle, skin, silicone implants and now, peachy pigment.

Not bad.

I have to say, nipple reconstruction and areola tattoos are a very personal choice.  I understand when enough is enough and why some women choose not to move forward.  It had not been an easy decision for me and it took quite a while to get there, but, I'm glad I did.

I had told my surgeon before he left the room that day, I was satisfied and as I said it, I believed that was good enough.  I had gone far enough, but now, one week later, I'm more than satisfied.  I'm pleased...and it took tattoos to do that.

Who would have thought?


Monday, December 5, 2011

Random Thoughts

I'm living on the edge here.  Posting random thoughts without the safety net of a rough draft.  I just don't feel like it today.  Forgive the upcoming ramble.

When days pass and I don't post anything new, I sometimes wonder why I bother with rough drafts at all.  Why don't I treat my blog like a diary and just write?  Why try to craft the perfect sentence?  Who cares, really?

When I was 11 years old, I started a journal after reading the book, Harriet the Spy by Louise Fitzhugh.  In that story, Harriet, carried a notebook with her where ever she went.  It was a companion, a place to share her observations.  A safe haven for all the thoughts and fears she wasn't brave enough to voice.

Something about that struck a chord and on October 16, 1975, to be exact, I started writing in a composition notebook and didn't stop until February 26, 2001. I wrote nearly everyday for 26 years.  In the time since, I would occasionally wonder why I stopped, why it no longer felt right, so today, out of curiosity, I found that last notebook and read its last entry.  It takes place three days after my wedding and 11 months after my mother died.  I didn't intend for it to be the end, it just was.  Blank pages fill the rest of the notebook.

It's my guess and I'm no psychoanalyst, but I stopped writing because life as I knew it, was drastically changed.  Glancing through that notebook, something I never, ever do, I realized most of my writing that last year talks about encountering life's dividing line.  I clearly felt the first part of my life was over.  No going back.  I no longer had a mother.  I had a husband.  I had a very different life than the one written by a young girl growing up or a single girl in college or a young woman with a big job in the big city.  With my current perspective, it's no wonder I stopped.  That girl was gone.

The interesting thing here is why I started writing again after so many years.  The catalyst pushing me to unburden myself through writing, as those when I stopped, was again, a life changer.  Hello, breast cancer.  When there was no one left to turn to who would understand, no one with an ear left to listen, instead of speaking the words aloud, I wrote them.  Not in a black & white notebook this time, but on a laptop, sharing with an invisible audience, and it felt right, but I edit.

Some of these posts are just too personal to go out without rewriting.  Tempering, in a sense, some raw emotion that might seem a bad fit for public consumption.

Along comes today and I'm uneasy.  My first instinct is to blog about it, but can't.  I'd have to write it out, revise it, make sense of it.  It could take days and in this case, I'm in need of instant gratification.  That's why I remembered the notebooks. How it used to be, when I wrote freely all the time, head to pen, without stopping until I said all I wanted to say. Can I allow myself to do that now or do I need to edit myself simply because my personal dilemma is going public?  I'd like to think I can just put it out there.

Tomorrow, I step again onto the path of breast cancer reconstruction.  My plastic surgeon has a whole hour of precious time blocked out just for me...and I'm not excited.  I'm very hesitant actually and can't figure out exactly why.

Tattoos.  The last phase of my 2.5 year ordeal, seems anything, but final. There's inner turmoil because tattoos, by nature, are permanent reminders.  A lasting souvenir, commemorating a journey's end, but how could it, when this journey is never truly over?

What happens next?  Am I supposed to walk out of his office as if things are all right in my world?  Just move on? Like the questions asked by Nancy's Point the other day.  I don't know that I can return to who I was just because my reconstruction is declared finished.  I'm changed and not only physically.

There are constant checks and recurrence fears, coupled with guilt that I should quit whining and (here it comes), be grateful it's not worse.  I am grateful, but that doesn't take away the worry.  Still there's something more here today. I don't know what it is.  Tattoos aren't that big a deal in the long run, and I should stop making it an issue...at least that's what I tell myself.  It's not really working.

I sometimes think my blog posts should contain a definitive answer to whatever I'm questioning.  That's probably why I revise so much.  I'm always trying to tie up loose ends into a neat, complete package, but on this day, writing off the cuff, I can't do it.  I don't have an answer to why tattooing yet more physical evidence of what I lost is bothering me so much.  This procedure is supposed to help it all look better, not worse.  I just hope it does.

I hope this post makes sense.

Anyone else face reconstruction procedures with trepidation?


Tuesday, November 29, 2011

When Cancer Steals


It seems, every now and then I accept that life is a force outside my control, playing out as intended, insisting I go with the flow, all of it, whether I like it or not.

Sometimes, when I find myself pushed along the fast track of husband, two growing boys, school, holidays, finances, Lego's everywhere, turkeys to cook, gifts to purchase...days pass.  There's contentment.  A feeling that perhaps life is how it should be.  All my years and decisions have led to these moments and I forget something is amiss.

Then some unexpected memory, or casual sighting of something familiar reminds me...and I'm pissed.

Often, it's the toll cancer places on all of us, that plays out in my thoughts, but this Thanksgiving, in particular, I saw what it took from my children.  

Breast cancer stole their grandmother.  

It wrenched an unconditional love right out of their lives, before it ever had a chance to grace their world and when I lose myself in ordinary days, it seems almost acceptable.  Something that sucks happened, and no one could stop it.  It just is.  Shoulders shrug.  What can we do?  Cancer came, collected its victim, and left a gigantic, jagged hole in more lives than I even knew at the time.

Over the years, I've considered how nice it would be if my boys had their grandmother, but it's really just an idea, a sweet dream based on distant recollections of my mother with my nieces and nephews.  There's the game I play of "if only she were here, she would be... and she would do..."

But, I can't really know for sure.  I imagine how my mom, now in her 70's, would act.  I catch glimpses of her in some stylish, older lady I may spot when out and about.  Something about her clothes, her haircut, or attitude ignites a sense of deja vu and inexplicably, I'm drawn to her, wanting in that instant to become her friend.  Maybe, if I look at her long enough, she'll instinctively know I'm in need and step up, but no doubt she has her own family, so I turn away.  Or maybe, I look away to squelch my rising emotion, escaping sadness just in the nick of time, avoiding it before it catches me.

I couldn't turn away on Thanksgiving day when I found myself surrounded by a slightly different holiday crowd than past years.  My cousin's in-laws were in attendance, her septuagenarian mother-in-law drew us all in.  She took to my sons as if they were her own grandchildren.  Playing games, giving gifts, handing out hugs and compliments to one and all, even to my husband and me.  Like my mother would, I think.  As if my boys were the most special boys on the planet, because I know to my mom, they would be.  

And on that day, I not only felt my sons' loss, I saw it, because here, in the form of someone else's grandma, it was personified and at the end of the day, we had to leave.  We had to go back home without this presence, without this wondrous addition to our lives.

It was clear to me then, how much cancer stole from us when it took my mother, beyond my loss, or my father's, but the loss of something immeasurable and yet to come.

How do I put a price on the void in my children's lives?  On something as intangible as the influence of one who loves you?  My boys don't even know they're missing out.  They can't want for something they've never known, but I can want it for them and be angry they don't have it.

I know people die.  People lose family members everyday.  It's life, I get it, but in my small circle of friends, the only grandmas missing, are the ones taken prematurely by breast cancer...and that, is downright infuriating.

How are we supposed to live with that?  The world needs grandmothers.

The answer, I suppose, is what it always is in our breast cancer community.

Research, research and more research until a cure or prevention stops cancer from stealing grandmothers...and everybody else.  




Monday, November 14, 2011

Disclosure

I want to start by saying I'm thankful I'm not spending countless hours receiving chemotherapy in an infusion room or suffering its ill effects.  Believe me, I know how lucky I am to have walked away with "only" a bilateral mastectomy with Tamoxifen everyday.  I know it easily could have been worse and I wouldn't be surprised if that's exactly where I find myself one day after all... You know, because of the whole No Cure thing.

Anyway, I'm not complaining.  Not by a long shot, but this post is about a new dilemma I'm faced with simply because, like it or not, breast cancer is a big part of my day.  Not in the same way those enduring treatment see it, or when I was freshly diagnosed, but it's there all the same.

I blog about it.

I still see my oncologist and breast surgeon every four months and I kind of like it.

I still attend a support group.

I check in daily with our online breast cancer community and care about the people I've virtually met there.

And just a few minutes ago, I found myself on the phone scheduling nipple tattoos, (Who says that?) looking forward to yet another fun time with my plastic surgeon.  And by the way, don't you think calling on a plastic surgeon to tattoo anything is a little beneath them?  It seems like something an assistant should do, maybe an intern, leaving the surgeon free to focus on more interesting and challenging work...face lifts, nose jobs, reconstruction.  But...I digress.

Saying I'm finished with breast cancer because my expanders are out and my implants in, is quite the understatement.  It never ends.  I used to think there was a finish line, but I'm no longer sure.

So, with all this cancer stuff in my everyday life, I'm treading carefully on a new friendship with someone who has no idea what happened.  How do I tell?  Or do I?  It almost feels deceitful not to, in a way.  As if I'm leaving out a large piece of who I am these days.  But, how do you approach the subject with someone who doesn't have a clue?

And maybe the bigger question is, why is it such a secret?

My story is by no means secret.  I'll discuss it with anyone who'll listen.  I'll write about it. I've even spoken to the occasional reporter and let them write about it, with my last name and town included.  So, why is it so hard to own up with someone who's new to the party?

Perhaps it has to do with protecting my young children from words they may not understand, such as cancer.  Not knowing who might say what and having it get to my boys before I'm ready or believe they're ready to truly understand what it meant for me to have breast cancer.  It's a conversation I'll have with them one day, but on my terms, when I believe it's time.


I've got no problem volunteering the words, "Me too!" in a breast cancer conversation someone else started, allowing me to connect with other knowing, breast cancer women, but when standing alone with nothing but my diagnosis to offer someone who hasn't lived it, I stumble.


Maybe, it's fear of the person's reaction.  Having already been spurned by one so-called friend, why risk it again? Although, I know if they can't deal, the problem is theirs, not mine.  I still have to admit there's a lingering stigma associated with the disease and I'm suffering from it.  Otherwise, why would I care what people think?  But, if they suddenly see me as a sick person, I have to care.  How someone views my health is very personal.

How can something I deal with so publicly, still feel so private?



I keep going over this in my head.  I'm not looking to gain support or understanding or anything by telling.  I'm not asking for anything.  I just want to share something that matters a whole lot to me, an experience I had that changed what I deem valuable in my life.

How do I not share that with a friend, but still...I hesitate.  


There's a great discussion on my Facebook page about this topic.  It seems many of us find ourselves in this or similar situations with no clear answer.  I guess telling someone new is like a leap of faith.  We just let go, jump in and hope for the best.


If the topic doesn't come up, how do you tell a new friend you have breast cancer or do you?



Tuesday, November 8, 2011

For My Friend

What's in the small tin box with flowers on it, a small boy might ask.  

It can't possibly be all that remains of my gorgeous dog, would be my answer.

Such a small box can't contain the life force I still feel with every glimpse of his face in some innocent photograph. His spirit, too large to be harnessed in a confined space, too anxious to be free.

I see him eager, excited to play, content to lay in the sun or romp in deep snow.  I feel his big snout pushing its way under my hand, searching for pets.  And then I'm sad again, but it goes beyond missing my friend.  There's a sense of guilt that somehow I let him down.  Did we let him go too soon?  We had promised to take care of him.

I tell myself he had a good life.  When others would have given up on a strong-willed, nervous, fiercely protective German Shepherd, we dug in, found the right trainer and taught him who was boss.  He had to know we were in charge.  The responsibility was ours, to look after him, not the other way around.  He learned to trust in us, to follow our commands.  He learned to let his guard down and just be.  It took quite a while, but we got there.

After experiencing the hills and valleys of his lifetime together it makes sense to be heartbroken at its end.  To feel his presence when getting the mail or turning out the lights at night.  I still look for him, and try to stop myself from wallowing, because after all, I think, it's not cancer.  He was an old dog who lived a good life.

Like that matters.

Like that doesn't make him worthy of the emotion, but of course, it does.  Cancer intrudes on everything.  Even my right to mourn my pet.

He was still my friend.  Ready with an open ear and a giving paw, never judging, never asking for anything more than a walk or a crunchy biscuit in return.  He was happy just sharing my space and all was right in my world when I came home to a wagging tail.

As thoughts of chasing tennis balls faded into long ago memory, and walking to the kitchen too much effort, when he no longer raised his head for ear scratches or treats or at the sound of his leash, when he was sick more than he wasn't and when he looked at us with questioning eyes, we knew, as promised.  We would take care of him.

Ours would be the last faces he'd see as he slowly, peacefully drifted off to sleep and hopefully felt some comfort. As ours were the faces he spied through a cage in a shelter more than eleven years ago.  Nose to nose, looking at each other, wondering would we be the ones to give him a home?

Maybe, as my husband stood away from the cage that day and said, "I like this one," the biggest dog in the shelter, thought the same about us.  Maybe, he thought it was his lucky day and I hope, as he closed his eyes that last time, he knew how much he was loved, how much joy and inspiration he brought to our lives and how very much he'll be missed.

As I look at my blog everyday, its photos and title and remember the reason for its name, I hope Goliath, somehow knows how very far his furry paw did reach.  Further than any of us could ever guess.




Wednesday, November 2, 2011

Grumbling

Thank you, Nancy Brinker.  For more than you know.
For providing the inspiration I needed to get blogging again when all I wanted to do was sit on the couch and mourn the loss of my beautiful dog.  When the thought of writing about breast cancer was beyond me.
For igniting a spark among my tired, depleted emotions.
For reminding me why my blog exists.  Why quiet bloggers everywhere with something to say -- matter.  We are not simply typing away in lonely, empty rooms for the sake of something to do.  Many of us were pushed into blogging by the sheer, ugly fact of having cancer or by the sad, frustration endured with the growing number of people we’ve lost to it.
In my case -- both.
So, Nancy Brinker, when people who are "scared to death" as your sister was, or like you, have lost someone or are dealing with their own breast cancer, women and men whose dream it is to realize the eradication of breast cancer, have their questions equated to words of “grumblers” and their concerns tossed aside as some lint plucked from a fancy pink jacket, you inspire us to write.  For that is all we can do.  We, the Grumblers.  We can ban together as one and as my friend, Jody, says, “Roar.”


Because, here’s the thing.  No one is denying the good work Komen has done over the years.  Especially me.  I’ve personally seen the benefits of breast cancer awareness after my mother fought her disease in quiet secret and when I was diagnosed years later.  I could choose to keep my mouth closed and solider on, as she had or use my words to describe the reality of the disease; it’s various forms, it’s ability to return no matter one’s prognosis or treatment.  I was able to find empathetic support, because the disease was no longer in the shadows.
And that is a direct result of the pink movement bringing breast cancer education to the masses, making it acceptable to say it’s name, Breast Cancer, in most homes around the world, but not all, not yet.  
So, I actually agree with you when you say “There won't be enough pink until the fight against this disease is won."  People are still dying.  Everyday.  Nearly 40,000 people in the United States alone will die this year, and it’s not because someone didn’t wear a pink tee shirt.  It’s not because someone didn’t purchase enough pink Tic Tacs or donate to yet another fundraiser.  It may not be because someone didn’t get a mammogram early enough.
Forty thousand people will die because we don’t know how to prevent metastatic breast cancer.
Because, in simple terms, we don’t know how to prevent normal cells from becoming malignant.
Maybe, if the bulk of donated dollars were given to research, we'd be more hopeful, but that is not the case.  Not when Komen for the Cure appropriates approximately 19% to research, along with a myriad of other organizations raising money "for the cure," but actually only raising enough to sell additional cute shirts and pink rubber bracelets adorned with catchy phrases.
What an opportunity you have, Nancy Brinker.  To stand up in front of the millions working so hard for the cause and announce Komen has fulfilled their goal of raising awareness, and while it won't be forgotten, fewer dollars will be allocated.  Stand up and declare it’s time for Komen to refocus their efforts where it's needed most -- research, because without that, breast cancer will never be cured.
Komen has the power to fund the most promising work, the opportunity to further incredible advancements.  Komen can be on the cutting edge of the breast cancer cure.
And isn’t that really what you promised your sister so long ago?  Back, when you yourself were grumbling about the way the disease was handled.  How can you fulfill your promise to end breast cancer without prioritizing research?
Please don’t disrespect us for questioning the status quo.  In the end, we all want the same thing.  A clear path to a future without breast cancer.  One where awareness campaigns are gone for good.  


We heard you.  Do you hear us?





Monday, October 24, 2011

Me and My Blog

I wrote the following post yesterday morning, in the last blissful, ignorant moments before my husband and I had to rush our beautiful dog, Goliath, to the vet for the last time.  I am too sad, too swallowed up by the emptiness of the house around me to write about Goliath now and all he meant to my husband, my boys and me.  


His rough start in life and his fierce determination to overcome adversity was the inspiration for my blog's name. I'm publishing yesterday's post exactly as I wrote it and dedicating it to Goliath, for if it weren't for him, the blog wouldn't be what it is and I wouldn't be better for having both.


   ----------------------------------------------------------------------

I don't commemorate cancerversaries.  Suspicious Ultrasound Day, Biopsy Day, Diagnosis Day, Mastectomy Day and all other days are uncomfortable to remember and may possibly always be.  It's certainly easier to look back with some perspective, more than two years later, but I'm not sure anything is gained by marking those days as an anniversary.  To me, it's more the whole journey that matters and how far I've come overall.

However, there is one milestone I'd like to mention.  Bringing Up Goliath turned one last week.  As my five year old likes to say, "That's cool, right?"

When I started this blog, I never considered how long I'd keep it up.  I went in thinking "one day at a time," because honestly, sharing intimate details with the cyber world seemed a bit crazy, not to mention a dangerous misuse of privacy, but looking back now, it was never the world I was reaching for, but one person that might relate to my experiences.  Maybe I'd find someone else going through the same crap and we could support each other.

At the time, about 16 months after diagnosis, my brain was still so cluttered with all things cancer, I'd lost the ability to go about my days.  How to be truly present in my life, my children's lives or my relationship with my husband.

It was one thing to have a calendar full of appointments, a million never-ending questions, pain from expanders, then implants, but it was quite another to talk about it all the time.

Who wants to listen to it?

Even those closest to me needed a respite once in a while.  Which, I totally understood, but that didn't change the fact I was on overload, my emotions consistently raw.

I realized I needed an outlet.  A way out of my own head, some breathing room from those oppressive walls of cancer.

I remember feeling totally alone, envisioning the void beyond my laptop, the first time my blog went live.  I was writing extremely personal stuff, things I might never mention to friends face to face, yet there it was, heading out to...where?

Somewhere.

I was hoping someone might find it, but knowing no one was reading, made it easier to keep going.  Writing about the day cancer changed my life or how exposed I felt at the hands (literally) of my surgeons or the difficulties keeping my children a priority, was very liberating.

As I started discovering and commenting on other blogs, readers started to comment on mine and each comment that said I was understood, justified and among friends, lifted my load bit by bit until some where along the way, I got my brain back.  It was no longer jam-packed with thoughts of cancer, but slowly, the real things that make up my life filtered back in.

Would that have happened simply with the passage of time?  I don't think so.  Sharing freed me from cancer's hold.  Discovering and connecting with an amazingly supportive and caring online community did that and more in ways I never thought possible.

I learned so much about breast cancer.  How very different we all are, despite sharing similar experiences.

I had my eyes opened to the shameful inequity in fundraising.

I've come to know very little progress has been made in finding a cure for Metastatic Breast Cancer and early detection is by no means, a cure.

I learned I'm far from alone.  I learned I could care about people I've never met and with that, I gained something I never imagined -- the return of a childlike wonder for the world around me, so foreign to my own New York City suburbs.  Beyond my house are places I now want to explore because someone in our cyber community has brought it to life.

I want to watch a marching band walk the football field at a Midwestern college.

I want to share the excitement at a Cornhuskers game in Nebraska.

I want to look for antiques in the Ozarks.

I want to ride a bike in the hot Texas sun.

I want to walk a couple of dogs along the Jersey shore.

I want to visit a town in Ireland, or England or take in the steamy sights of far off Myanmar.

I'm grateful for the blogging friends that have stopped along the way, read my words, shared their own and broadened my small world.  Who would have thought writing about cancer could do that?

Happy Blogaversary to me!  Sharing personal crap on the Internet turned out better than I ever hoped.

But, that doesn't mean I think cancer is a gift!   I don't!



Wednesday, October 19, 2011

Not Leaving Yet

My dog, Goliath, my buddy, my first boy, nearly died last night.  He is a German Shepherd and he experienced Bloat.

Bloat is a serious condition that affects large breeds when too much air is taken into their bellies, usually by eating too fast or exercising before or after a meal.  The stomach expands and after a while, twists around, like a wet rag. There is a small window of time to relieve the pressure, otherwise, it is quickly fatal.

As I've written here before, I'm very aware of the passage of time with every glance at my old dog.  He's 13 now. As recently as March, he weighed his usual 100lbs, but on Monday, he was down to 76lbs.

He's shrinking right before my eyes.  My once, strong, handsome boy is old.  He struggles to stand.  He can barely walk up the driveway.  The dog who used to pull me down the road as if he were walking me, now lags behind, gingerly trying to keep up.

We question the dramatic weight loss.  Is pain from arthritis hampering his appetite or is there a bigger issue we're not seeing simply because we don't want to know.  Are we refusing to face the inevitable?  Afraid to prepare ourselves for the awfulness of saying goodbye.

I'm convinced whether or not we want answers, we need them, to do right by Goliath.  He deserves that.  I think of his quality of life and believe it's there.

He loves being outside, laying in the grass snapping at flies or bees or whatever comes his way.  He still races by with a biscuit in his mouth, eager to devour his prize, for fear someone might get a piece of this deliciousness.  He inhales the affection shown through belly rubs and ear scratches and shows his appreciation by dropping his heavy paw in the lap of the lucky giver.

And if that's all he gets these days, then I need to believe it's enough. Quiet times leading to a peaceful, unavoidable end.

But not last night.  An hour after his dinner he started to writhe in agony, gasping for air and foaming at the mouth.  It was after hours and the nearest emergency animal hospital was 25 minutes away.  Leaving our boys with my mother-in-law, who was thankfully here, my husband and I took him.  Driving faster than speed limits allow.

I sat in the back with him, holding his head, listening for each raspy breath, while his skinny body trembled.  All I could think was, "Don't die, Goliath.  Not in the back of a car, in this horrible, torturous way."  After all our years together, this can't be how it ends, but any other conclusion seemed impossible.

My husband spoke of doing things differently when Goliath gets past this.  I don't know where he gets his faith or maybe it was denial.  A deep refusal to believe his beloved best friend was leaving us.  Maybe he was being naive. I was glad he wouldn't face the worst case scenario alone.  I was the one used to the sad ending, not him.  I would be there to hold his hand as he so often held mine.

The minutes and highway exits slowly passed and by some miracle, Goliath was still alive when we arrived.  The vet managed to relieve the air pressure before the stomach twisted completely.

I was in awe of my husband's composure.  He never believed life with our dog was over.  To him, it just wasn't an option.

I was proud of Goliath.  He summoned his strength when he needed it most.  Maybe he knew he was loved. Maybe, it just wasn't his time.  Maybe, things don't always need to be so tragic.

Amazingly, my dog is home now.  Laying calmly at my feet, as he should, with only a paw print bandage to show for the night's excitement.




Thursday, October 13, 2011

Surrounded

It amazes me there are people on this planet who don't think about breast cancer every waking moment, or at the very least, once a day.  It's inconceivable to me that such a life exists.  I seem to be surrounded by it constantly. Even if I wanted to, there's no getting away from it.

So, it came as no surprise to see The Huffington Post piece by Fran Visco, President of the National Breast Cancer Coalition, state breast cancer kills someone in this country every 14 minutes.  I personally know each and every one of them.

Well, it feels like that sometimes.

I often like to think I've had my share; mother, aunt, sister-in-law's mom, the young wife of a good friend -- all gone. All died after their cancer metastasized.  How many people do I need to know before it leaves my life for good? No answer as it reaches out to bloggers and just the other day, an old high school friend of the same sister-in-law, succumbs at the ripe old age of 46.

I'm 47.  My mother was 49 when first diagnosed.  I feel like I'm walking among land mines and it's harder and harder to step safely, because in spite of my early detection, I don't believe I'm cured.  I fear I'll be walking around one day, only to have my whole life blow up in my face.  Where's the good in early detection when nearly 25% of early stage breast cancer metastasize and can't be cured?  Does awareness matter if the outcome is the same?




See the girl in the puffy blue jacket, 4th from the right?  That's me.  See the red haired girl next to me?  That's Dina. We're about sixteen.  When Dina was 34 years old her physician was sure the lump in her breast was a cyst.  It couldn't possibly be breast cancer.  She was too young and Dina believed that.  Why wouldn't she?  In 1998, breast cancer awareness wasn't the groundswell it is today and every product on the market had yet to turn pink.

When her lump was still there 10 months later, the same physician told Dina to alert her gynecologist during her annual exam.  Which she did...two months later.

One year after initially telling her physician about a lump in her breast, Dina was diagnosed with Stage IV breast cancer. The cancer had metastasized to her lungs, liver and bones.  She didn't stand a chance.

The girl next to me in that photo, holding my hand, died of Metastatic breast cancer.  We had no way of knowing our fate on that day.  I'd learn all about breast cancer, up close and personal, three years later when my mother found her lump, but Dina wouldn't learn for nearly twenty years when her own lump was finally biopsied.

Too late.

Ironic, really.  Two lives, starting on the same path, only to split off in very different directions.  At 19 years old, breast cancer became a huge part of my life and I've lived my years thinking about it, watching it's effect on loved ones, almost waiting for it to touch me.  I knew its power because I had witnessed it first hand, several times over, but Dina didn't.

Would the outcome differ if Dina had known more?  Who can say?  Sometimes knowing...isn't enough.  Many times, in fact, as Stage I inexplicably morphs into Stage IV.  Awareness may have helped Dina for a short time, but it wouldn't save her from Metastatic breast cancer and MBC isn't curable.

It is my hope Metastatic Breast Cancer becomes a household term the way "Awareness" has.  Maybe if MBC can find a foothold in the minds of those that can do something.  Anything...talk about it, blog about it, raise funds for research on par with education and awareness campaigns...

Then maybe we won't need a Stage IV, or any Stages.  Maybe people will stop dying every 14 minutes and maybe future generations can grow up wondering what all the fuss was about.


Wednesday, October 5, 2011

Let There Be Cheerleaders

For the past few days, I've been trying to write a post about Sunday, but it's October and I'm distracted.  Everywhere I turn I'm overwhelmed with pinkertising while not even looking for it.  But, there it is.  In my mailbox, in my supermarket (chicken sausage, anyone?), at my gym and even in the dentist's chair adorning the paper bib used to soak up spit.  I was informed by the hygienist, these bibs were specially purchased to help raise awareness.

Oh, it's working.  I'm totally aware.

My brother asked if I'm anti-pink.  Not exactly.  Like so many these days, I'm against what "pink" has come to represent. The happy-go-lucky, early stage, still having fun, never sick, all is right in the world, let's get coffee with perfect hair and makeup, cancer survivor.  My skin prickles at this unrealistic vision created by major marketing machines.

All is not well in the land of breast cancer.  For if it were, there would be no need for last Sunday.

It's been nearly thirty years since Nancy Brinker founded the Susan G. Komen organization and began work to end breast cancer.  In those years, Komen and other cancer organizations succeeded in shining a light on what was once a shameful, embarrassing, deadly disease.  A disease, no one dared speak of louder than a whisper.

How far they've come.  I can't step outside my door, or power up my computer without being assaulted by a litany of companies all promising to aid in the fight.  All promising their donated dollars will put a stop to it.

The thing is, it hasn't worked.  Thirty years, no cure and more questions than answers.  The promise most of us grew up with, has yet to come true.  We're still being told we have breast cancer.  It's that failure in finding a cure which inspired thousands of people on Sunday to turn out for a small organization, named Support Connection.

The crowd didn't show to raise money for research.

They weren't walking for education and awareness.

It wasn't about the cure.

Their purpose was to acknowledge the remnants of unfulfilled promises -- The people left in cancer's wake. Those of us actually living with breast or ovarian cancer.  The day was simply a way of ensuring this organization would continue to provide its free support, information, counseling and hope through stories and experiences of women who had lived it.

That kind of help is sadly, still desperately in need.

All these years without answers created the urgency for such a place.  As the reign of breast cancer lingers, Support Connection exists for the approximate 200,000 women who annually find themselves newly diagnosed.  It exists for those with advanced stages of breast cancer, which continues to occur since no one has discovered how to stop Stage I from becoming Stage IV.

Without a cure, we are left to fend for ourselves, but if we're lucky, we'll find the support needed to heal...needed to just face our day.

It was a beautiful Sunday.  Many participants walked together as teams.  Many brought dogs. Cheerleading squads and local high school bands performed along the path and at first, I couldn't understand why they were cheering.

This wasn't a race.  No one was awarded a prize for finishing first.  We were here for each other.  That's why they were cheering.  For the thousands of us, everywhere, directly affected by society's failure to eradicate this disease.  We're still dealing with cancer, everyday.  We live with it, die with it and carry each other along the way.

Many walkers wore signs claiming "In honor of" or "In memory of" some loved one.  Many were walking to commemorate their own triumphs.  I didn't pin on any signs in the name of those I've lost.  I also didn't walk for myself.  I walked for all the ladies and men I've never met who will one day hear the words, "You have cancer" and need a  place to turn. Support Connection provides that and with the generosity of donors, will continue to freely give services until they are no longer needed.  When the promises of all the pink finally, hopefully, one day come to fruition and breast cancer becomes a thing of the past.

Sorry, Support Connection, your doors will have to close.  Fundraising walks will go by the wayside and your toll-free hotline will quietly shut down, but those cheerleaders... They'll really have something to yell about.  What a welcome sight that will be.




Wednesday, September 28, 2011

An Ordinary Day

It's closing in on October, or I should say, Pinktober, and I have the makings of a blog post sitting next to me, but it's not ready.  I'm still wading through the conflicting emotions I have toward the whole pink thing, so instead of pushing through, I'm pushing it aside for the moment and focusing on a question asked by the lovely Marie at Journeying Beyond Breast Cancer.

It's an intriguing question.  One, I haven't been able to let go since reading it several weeks ago.

If I could relive any day in my life, which would I choose?

Thinking about this brought on it's own questions.

Could I choose to relive it using the knowledge and perspective gained with time?  Is that cheating or simply the answer to a very different question?

Assuming I couldn't change anything, which day would I choose?  Would it be about cancer? Some sort of milestone day?  My wedding?  My children's adoption days?  Maybe a day with my mom, when we were both young and breast cancer had yet to invade our lives?

Nothing I reminisced about seemed right -- special enough.  Or even ordinary enough...For this gift.  Because that's what it is.  The gift of reliving one day.  A precious gift given once, to be used once and then gone.

As I pondered, the weather changed.  Fall moved in and brought to mind one very ordinary day, during one ordinary September.

I was married, living nicely with my husband and big dog in a small house.  I had given up my job in the city about four years prior, right after my mother died, and was going to graduate school to study education.  For a job with more sunlight and laughter as opposed to dark edit rooms and stressed out clients.

On this particular day, I was working in a private school, heading their after-school program and subbing in the Kindergarten.  I had just been asked to teach the Kindergarten for the entire year since the teacher was taking an unexpected, extended maternity leave.

It was an amazing opportunity.  One, that validated my decision to leave video post-production after so many years.  It would all work out...except I knew I wouldn't be able to accept it.  There was something I had to do.  I just didn't know when.

The weather that evening was beautiful.  Perfect autumn in New York.  The leaves were changing color.  Jackets weren't yet required.

After dinner my husband took our dog outside to keep him company while he mowed the lawn in the late day sunlight.

I was sitting in our living room when the phone rang and in that instant, I wondered if it might be the call we were waiting months to receive.  It was something about the time.  It was still dinner time and unusual for most people to call.

When I said hello and heard the start of an unfamiliar voice -- I held my breath and hoped.

"There's a baby," the man from our adoption agency said.  Born, only four months ago.

"Yes, yes, yes."  Was my answer to all his questions.  An email with a photo and some sparse information was on its way.  I could hear my husband still mowing outside.  I was about to make his day.

I remember it like it was yesterday.  In a way, I am reliving it.  The sun was getting low, as I went out to the yard.

"The agency called.  There's a boy."

Our boy
Waiting for our old computer to boot up was excruciating, but the email was already there.  Before we could read a word, we were drawn in by a little face.  Our son.

The idea of our baby had become reality. Now, right in front of us.  A face to match our visions.

This day, this moment was the start of our new adventure.  The beginning of our family.

I wouldn't be able to keep the teaching job much longer.  I had to go to Russia.  Our baby was waiting.

Two and a half years later, we'd get another call, about another baby and it was equally special. Beyond exciting, but nothing compares to those first moments, when our dream of growing our family was finally so real.

It was a happy day.  The promise of a future had never seemed so clear.  In the years since, cancer would cloud our future, but on that day it was brightly laid out for us to see.  It was that day, when all was right in our world and our world was on the verge of great change, that I would relive in a heartbeat.

Seven years later



If given the gift of reliving one day, which would you choose?


Monday, September 19, 2011

Guilty on my Mind

I'm guilty of a lot of things lately.  I suppose I often am, but ever since last week's #BCSM (Breast Cancer Social Media) tweet chat, I'm really aware of it.

It was wonderful having nearly everyone I follow online together that night discussing all the reasons for a cancer patient's guilt, whether derserved or most likely, not.  I understood every single one and all the questions associated with guilt, have been following me ever since.

Why do I let it get to me?

How is this my fault?

I'm sorry for causing my husband such worry.

I resent the time needed for doctor appointments.  

How dare I feel sorry myself when others have it so much worse...and not just in our cancer world, but life in general.  

Then the other day, I flipped through a women's magazine, the October issue, to ponder an article.  "The Breast Q & A"  Questions you still need answered about breast cancer.

Turns out I had all the answers, so maybe I wasn't exactly the target audience for this article, but I continued on to the end to read their "risk-slashing checklist."

And there it was, in print, no less.  Proof, it's my fault.

Breast feed, in one study, women at high genetic risk, (such as myself) were 45 percent less likely to develop breast cancer if they breast fed for more than a year.

My children are adopted, so not only did I not give birth at a fairly young age, or ever.  I screwed up even more by never breast feeding.

I knew it.  I started to count the ways my cancer was my fault.

I started menstruating in 6th grade.  My smarter friends waited until 8th.

I was raised on sugary treats.  Ice cream and brownies are my poison of choice to this day, though I usually make my own baked goods to avoid all the artificial ingredients and preservatives found in supermarket brands, but the joke is on me.  Sugar has been the culprit all along.  It's my understanding, sugar is cancer's food of choice...and I've yet to give it up or dairy, for that matter.

So, there it is.  More guilt.  More ways I've screwed up.

I haven't worked out all summer.  I've gained five pounds, maybe more.

I don't want to blame myself for these things, but clearly I'm increasing my risk for recurrence.  I know how badly I feel now.  I can't begin to accept the guilt I'll feel if or when it comes back.  Like many cancer survivors, I imagine it's still there somewhere, waiting for someday.

I remember in the weeks after diagnosis, while waiting for surgery, I'd visualize the cancer being sucked out, taken away for good.  I really believed in the power of that image.

I don't know why I can't do that now.  Why can't I believe in the power of healing?  Have faith in good news?  Maybe it's because I know it's not enough. Perhaps if I tried harder, worked at it more --

Ate better  

Ran my ass off

Said goodbye to sugar, alcohol and my beloved ice cream

Would it be reminiscent of my decision to have a bilateral mastectomy instead of lumpectomy?  I slept better then believing I'd done all I could.  I fought with all I had...Then.

Now, more than two years later I've gotten sloppy, complacent.  I'm falling back into old, unhealthy habits and no one would be to blame for a recurrence but myself.  Regardless of statistics.

So, that's where guilt comes in and stays in.

Is ice cream really worth it?  I don't know the answer, but for my own peace of mind, I need to find some middle ground.  I can't change the age I first got my period, or the fact that I never gave birth or breast fed, but I've got to change what I can.  This burden of guilt is getting very heavy.

My plan is to skip dessert and go to the gym tomorrow.  I wish I had a buddy to go along.  Someone else running on a treadmill, not to lose weight, but to lose the cancer cells that may be closing in on us.  Believing we left them in the dust would go a long way in unloading this guilt.



Monday, September 12, 2011

Playing the Cancer Card

     In the past, I've been fortunate to have guest bloggers remind us our diagnosis extends past our reach to those who care about us, and though, they're not directly in the line of cancer's fire, standing on the sidelines is enough to feel the heat.
    Today, my guest blogger, Debbie, graciously provides a glimpse inside her corner of Long Island and the unwelcome player at her poker table.  She writes from a perspective I've never known and hope to never know, that of the friend to someone with breast cancer.  
    Debbie is a childrens book author by day, a darn good guest blogger and from the sound of it, a great friend.  Deb, I can't thank you enough for sharing.  

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So, it's Poker Night.

I'm sitting around a large dining room table with my Poker Pals: a half-dozen or so couples Adam (husband) and I have been playing Texas Hold 'Em with for years. Sometimes as often as twice a month.

The youngest Poker Pal is 42. The oldest, 51. Some of us have known one another since childhood when our own moms were friends, but mostly we've become close through a Jewish organization we've been part of for sixteen years. Our kids are close, too (well, they had no choice, really). 

Adam (always a teaser) playfully starts in on my friend Shari. “You can't be in the hand if you can't make the ante,” he tells her after she antes up only half of what's supposed to be the bet.

“Wait! Why not? We've always played this way!” Shari insists. “You can play one last hand if you have chips left.”   

This immediately gets an argument from Mark (friend), who is sitting next to Shari. “But you have to be at least close to the ante,” he argues.

“I am!” Shari exclaims. “I'm just a couple of chips down!”

“Are you crazy? You're more than a couple of chips down!” insists Lisa (friend) from across the table. “You don't even have close to enough!”

Shari folds her arms across her chest and sits back abruptly in her chair. “Oh, come on!” she pleads with us all. “Let me play the hand! I have cancer!”

Armand (friend) stops dealing.

Now, I'm pretty sure had this exchange taken place in, oh, say Target (“But I'm only short a dollar – come on...I have cancer!”) ...it would have no doubt made the cashier and any nearby shoppers uncomfortable.

But not this crowd.

I clear my throat. “Seriously?” I call loudly to Shari from the opposite end of the table. “You're playing the Cancer Card?”

“No good?” Shari asks, still hopeful she'll get away with bullshit.

“Not even close,” I tell her as the hand goes on without her.

Yes, Shari had breast cancer up until two years ago. She was diagnosed the exact same time as Stacey and pretty much followed the same route as Stacey, too, with surgery, a double mastectomy, and reconstructive surgery. And, also like Stacey, she lost both her mother and her aunt to the disease.

It's almost incomprehensible that out of my seven dear female “Poker Pals,” two have had breast cancer and mastectomies. Three others lost their mothers and aunts to breast cancer. Four Poker Pals' husbands have mothers who have breast cancer right now. And Shari's younger sister (yes, younger) is fighting breast cancer at this very moment...for the second time.

How crazy is that?

I mean, how is it possible that out of such a small group, so many of us have been hit by breast cancer? Why? What's the common thread here – that we're all Jewish? That we all live on Long Island?

That we all have breasts?

Sadly, I think (but I don't know because I'm not a scientist or researcher) all three of those reasons are probably true.

I live on Long Island. I'm Jewish. And I have breasts. Thank God I don't have breast cancer (kenahora – in Yiddish: “without jinxing myself”), but it hardly matters. With so many dear friends living under the black cloud of cancer, I feel their pain. And while I know I don't feel the same pain of actually having cancer, the pain I feel going through this nightmare with close friends can, most times, be as debilitating, agonizing, and just plain sucky.

Which (finally) brings me to the point of this blog: What, exactly, can the non-cancer friend possibly do to help a friend with cancer? Seriously, there's nothing worse than feeling totally helpless when all you want to do is help.

When Shari got breast cancer – and years before, when Poker Pal Lisa got it – there was a rush by the rest of us Poker Pals to help out in any way possible.  Can we watch your kids while you're at the doctor? Can we drive you to chemo? Can we bring you food? (Remember – we're Jewish.)

What can we DO? we begged  them. Anything! Tell us anything! Anything that would make us feel less helpless.

But between husbands and in-laws, relatives and even closer friends, we were (I was) never really given a task that I felt was helpful enough.

Pick up detergent at Costco? Big deal, I thought. Call to cancel a manicure appointment? Ugh. Come on – give me something important to do! Order dinner from La Scalla? Whatever. Fill the car up with gas? Small potatoes. Drive the kids home from Hebrew School? Okay...then what? If you're someone who has a close friend with breast cancer, then you know how useless I felt running such mundane, ordinary errands.

It took me a long time to learn that the Costco runs for Kirkland stuff and the phone calls to Blossom Nails were truly a huge help to my friends.  And honestly, what was I thinking I could do to help anyway? Find a cure? Perform surgery? Administer chemo?

One afternoon, I discovered one way I, in the role of friend, could be most helpful. It was the day I went with one of my friends wig shopping. (I'm gonna respect her privacy here.) I was so glad to finally have something monumental I could help with: Picking out the hair she would have for the next 10 months or so? Yes! This was serious business! This would be a HUGE help! Count me in!

What happened was that as soon as we stepped into the wig store and began modeling wigs for each other,  all seriousness and decorum went out the door. I had been so focused on the fact that I was “stepping up” and “helping with the serious stuff,” I was totally unprepared for how much we laughed that day while trying on the most insanely UGLY and OUTRAGEOUS wigs! But I know for a fact we had never – in the two decades of our friendship - laughed harder together.  “Do you need eyebrows?” the saleswoman asked us. “Because I get you best eyebrows!”

(I had to sit at that point because, I swear, I nearly peed myself right there.)

Anyway, once I stopped laughing, that's when it hit me: just hanging out and having fun with my friend was monumental. Forget that we were shopping for wigs (and eyebrows!) because she would soon lose all her hair to chemo, being responsible for making us laugh 'till we peed in our pants was helping! Acting like two silly teenagers was just such a “normal” thing to do.

And “normal” can sometimes be just what the oncologist ordered.