It's About Time...

Time is the greatest of gifts, giving us the opportunity for growth, change, healing, and possibility.

These last few days have been filled with celebration:  Saturday was my 53rd birthday, another year of being alive and loving, of being aware and awake and moving.  We often lament the passing years as we “get older” (but forget the “wiser” part) as our knees stiffen and our minds lose track of words and misplace keys.  I’ll happily take all of that (and more!!) if it means another hour, another day, another week, one more year.  Better have that fire extinguisher on standby – I plan on a birthday cake with enough candles to burn down the house one day!

And Monday – another day to celebrate as it’s been three weeks since the completion of IV antibiotics for my superbug infection.  I’ve been sitting on pins and needles for three weeks, waiting for the first signs of the infection returning, but I finally feel confident that the infection is gone, sent packing on its ass with its hat in its hand – and it isn’t coming back.

Good riddance!!

Lucy’s size has decreased significantly, too.  While she feels very similar in size to Ethel, the only Twins they resemble would be Danny DeVito and Arnold Schwarzenegger.  Lucy looks as though I have a perfectly round implant perched high on my chest; Ethel looks like she belongs on the body of a middle-aged woman who’s breast-fed and isn’t fond of wearing a bra, falling rather “naturally” a good 4 inches lower than Lucy.  Without a bra the difference in the two girls becomes visible and a bit embarrassingly obvious, yet wearing a bra for any length of time is considerably uncomfortable and even painful.  I’ve taken to wearing spandex tank tops under oversized shirts to minimize and hide the neon flashing “Look at the Bobbled Boobies” sign that hangs from my chest…

Yeah, it bothers me.  I never thought it would, I didn’t think I cared about my breasts or how I looked that much, but I do.  I do.  And that was a surprise to me.

But in time this, too, will evolve and improve.  More surgeries await in the new year, and while I’ll never be perfectly symmetrical without clothing, no one else will be the wiser (except maybe Ken….)

Time passed and I was encouraged to return to exercising to combat the overwhelming fatigue and incredibly sad weakness.  It was surprising (but not unexpected) how quickly all my hard work prior to surgery magically disappeared.  So – I begin at the beginning, pulling out the old Couch-to-5k app so I can run (60 seconds) and walk (90 seconds), and begin the hard work of getting back to the Old Me.  The first couple of runs are painful physically and emotionally; I cry because I can’t find my breath, my knees hurt, I used to be able to DO THIS and now I can barely crawl.  But I know it will get better, that I will get better, and so I take a moment during my walk to be thankful for the ability to move, regardless of how fast (or slow) I’m doing it.

Another minute, another day…I have time to get back to this.

My first yoga class is both more and less of a challenge than I anticipated.  I don’t yet have the range of motion I had before; I can’t raise my left arm fully above my head, and my Forward Fold is less Fold and more Bend.  But when I flow into my first Downward Dog I hear an audible sigh of relief…and realize it’s from my own heart and soul.  I hold this pose, walking my Dog and sending out vibes of gratitude for this class, my fellow yogis, and my ability to return to my mat.

Another moment, another opportunity…and there will be so many more to come.

Beautifully, my life goes on.

All along this journey Ken and I have been blessed with support from family, friends and colleagues  – kind words, positive thoughts and prayers, delicious meals and surprise gifts to lift our spirits and warm our bellies and souls.  The cards, flowers, phone calls, messages, all with sincere inquiries about how we’re doing.  Reaching out across the miles or around the block, the message is the same – we care, we’re worried, what do you need, what can we do?

It’s easy to feel overwhelmed by the outpouring of love and attention, when I feel as though this experience is just a bump in my road.  Everyone has their own story, is dealing with their own critical moments and life experience; we are no different, so I don’t often feel worthy of the attention.  “Thank you” doesn’t seem enough, but truly my heart is full of gratitude for the continued outpouring of encouragement, positivity, comfort, peace, inspiration and strength.

There is so much love, and we are so blessed.  Thank you, thank you, thank you!!

Technically, treatment for this round of cancer is complete.  Granted, there will be scans and appointments in the next few months, but I realized the other day that life is moving forward and it’s time for me to do the same. I need a break from this blog, from cancer, from focusing on what has been instead of looking forward to what will be.  It’s been a long four years of Cancer, but I need not to let this awful disease define Who I Am, so this is my opportunity to take back what it mine.

My life.

Tomorrow is the Autumnal Equinox.  The light of day will give way to the longer darkness of night, but Livin’ keeps the brightness of love and life in sight.  I continue to take a few moments every day to pause and purposefully internalize the gratitude I have for every sunrise, every day, every moment, every breath.

A life worth Livin’ needs to be lived; that is when the magic happens. It’s time for me to get back to that.

Thank you for walking with us these last few months (and years).  May you be blessed with health, happiness and love – and much courageous, outrageous, adventurous Livin’ to you.

Sometimes, Things Don't Go Exactly as Planned....

My apologies for the length of my last blog post.  Sometimes I feel like I have so much to say and it’s hard to edit down without losing the flavor of the story.  Thank you for sticking with me through that, and for coming back to continue with me on this journey.  Hopefully this won’t be quite as difficult to get through.

Now that surgery’s out of the way, I’m on my way to healing and putting this Stupid Cancer behind me once and for all.  The focus right now is on resting and eating well to aid healing.  For the first few days home I move through simple daily tasks aided by Ken – showering, dressing, getting up and down the stairs.  Slowly I regain some range of motion and confidence and am able to start doing things for myself, but for a time it’s agonizing to be so dependent on someone else.  I have a new perspective and appreciation for the anxiety and challenges my parents face each and every day, as their need for assistance continues to grow.  I apologize to them a thousand times a day in my head for all the times I’ve been impatient and less-than-kind with them and their aging bodies.

Three times a day, Ken and I “strip” the JP drains and record their values.  The drains are large, clear rubber bulbs about the size of your fist, attached to clear plastic tubing about two feet long.  The ends of the tubes are nestled inside my abdomen at each end of my tummy incision, with another drain sutured inside my left breast.  These bulbs help suction blood and other bodily fluids from the incisions, preventing seromas (closed pockets of body fluid) and hematomas (closed pockets of blood).  Small amounts can be absorbed by the body over time, but larger amounts not removed can lead to infection and other complications, and these drains facilitate that process.

With one hand we stabilize the plastic tube to prevent pulling it out, and with the other use an alcohol pad to clamp and “wipe” the fluid away from the body into the bulb.  We then open the valve at the top of the bulb and pour the fluid into a small container to measure the output.  We squeeze the bulb to expel extra air then close the valve at the top, and we’re done.

It can be kind of gross (and yet weirdly fascinating, I’m not gonna lie).  Having been a paramedic, Ken is incredibly helpful with this process as no amount of body fluid bothers him in the least (it’s one of the weird things I love about him).

I wear the drains in a super-sexy VS-worthy camisole, resplendent with a lace-covered velcro front closure and internal pockets to hold drains and breast forms.  When showering, I hang the drains from large safety pins on a lanyard around my neck.  I’m a jumble of bulbs and tubing, and not only do they easily get tangled, but it’s equally easy to accidentally yank on them when changing clothing or pulling down pants.  The easiest way to avoid this unfortunate (and painful) experience (at least at night, when lights are low and a bathroom run is inevitable) is to go commando and wear a gown.

Ken offers to pick up something that will button or snap or zip up the front, is big enough to cover the super-sexy cami, and is cool enough to sleep in.

Which is how I ended up modeling My Grandmother’s Mumu:

It is totally the icing on the super-sexy cake of breast reconstruction and recovery.

Damn, I’m hot.

Once a drain puts out less than 30 mL total for two days in a row it can be removed.  By Thursday all three are on track to be removed at the same time and we decide to wait until my follow-up appointment the following Tuesday instead of making an extra trip to Ann Arbor. On Friday, though, the breast drain output increases.  On Saturday it’s higher still, but by Sunday it’s decreasing once again.  On Monday it’s below 30mL for the day, but since we don’t have two days’ of consistency the PA won’t allow it to be pulled on Tuesday.

I whine.  I cajole.  I think I even beg a little.  No go.  I decide to be super-happy that I’m losing the abdominal drains, which have been more of a challenge that I could have anticipated (and I can put my panties back on).

We make the return trip to Ann Arbor on Friday afternoon, and much to my delight the final ball-and-chain is removed.  It’s hard to describe how good it feels to be completely free of the very last of these surgical tethers; it’s been a long two weeks at this point and I’m looking forward to resting and healing unconstrained by body fluids and bandages.

After our appointment Ken and I enjoy a mid-day “old people’s dinner” at Zingerman’s Roadhouse.  The benefit of having a surgically reduce tummy is I’ve lost my “overeater’s pooch” that used to allow me eat in excess and sport a food baby for several hours.  Now, as soon as I start to feel full I’m unable to eat anymore.  This means I rarely eat an entire meal – and I’ve already dropped a couple of pounds.  I nibble on my enormous patty melt and ask for a box after just a few bites.  We decide to catch a matinee of the new Bourne installment on the way home, and as Ken drives I settle back in to my seat to relax and enjoy feeling free.

I doze on and off on the drive home – something I never do.  I hate sleeping in a car, and as we approach Jackson I realize I’m not feeling very well.  Ken and I decide to see the movie later in the weekend, and when I get home I lay down to take a nap so I get over what I assume is just a lack of sleep.

After a two-hour nap I wake long enough to grab a quick snack, chat with my dear husband, and fall back asleep for the night.  I sleep fitfully, odd dreams waking me as I alternating between hot flashes and chills.  The next morning I wake and realize something’s not quite right.  In fact, I feel “sideways”, the word Stephanie used as a child to describe how she felt when she had a bad fever.  Ken checks my forehead which seems cool enough, but I notice my left breast is a little tender which I attribute to removing the drain the day before.  Still, I take two Tylenol just in case.

At 11:00 I take my temperature – 99.8 – not unreasonable.  At 11:30 I take it again, butnow it’s 101.7.  I call the plastic surgeon on duty as directed in my discharge instructions (“any fever over 100.5”)  By the time she calls me back an hour later my breast is much more painful and swollen, but my temp has come down to 101.4.  She asks if my breast is red to which I reply that it’s not – I had checked it a few hours prior when I was cleaning the drain site and don’t remember seeing any redness.  She attributes the fever to something other than my breast, but suggests I come into the ER at UofM to be seen.

An hour later we’re in the ER chatting the Nurse Mike who doesn’t hesitate to see my port as the best access (finally – someone who agrees with me!!).  The on-call PS stops by and a quick check of my left breast reveals some redness and swelling underneath the breast.

She snaps a pic of my breast with her iPhone and sends it off to my surgeon.  Half an hour later I’m being admitted for IV antibiotics.  The PS believes I have cellulitis, and a couple of days of IV antibiotics should help clear it up.

Everyone we come into contact with has the same question:

“Weren’t you just here a couple of weeks ago?”

To which I reply every time:

“I missed the pudding.  I was looking for a reason to come back.”

But deep down, I’m a little concerned.  I understood the risk for infection with this type of surgery, but 24 hours ago I was feeling pretty good and normal.  I packed a bag on the off-chance that I’d be admitted, so I decided to use this opportunity to read a little more Harry Potter, work on my newest afghan project, and finish my last blog post (obviously fueled by hospital pudding and pain meds).

Ta-da!

I’m escorted upstairs….to the very same room from which I had been discharged two weeks prior.  I pass my former nurse and aid in the hall, and we had the pudding-and-cellulitis conversation.  We settle in to our time-share condo and chat with the nurses regarding treatment.  By now it’s evening and I send Ken home with the promise to visit me on Sunday, with the assumption I’ll be released.

Despite strong IV antibiotics, the infection continues to progress, causing serious pain in my breast, and fear in my heart that the flap will fail.  The PS tells me that having a tissue transplant is actually preferable; an infection with an implant or tissue expander requires removal of the “foreign body” until the infection is under control.  On Sunday evening I’m switched to a strong oral antibiotic and another 24-hour watch period.

On Monday morning there is, again, no improvement.  By now my breast is fiery red, rock-hard, and feels like a half-ton weight on my chest.  I’m living on pain meds and naps at this point, hoping and praying for relief soon.

The PS sends me down to ultrasound to look deeper into the breast tissue and determine the cause of the swelling and pain.  They suspect something bigger and deeper than cellulitis – potentially seromas or hematomas.  The ultrasound reveals four “pockets of fluid” – two rather large, and two much smaller.  After consultation with Dr. M, the radiologist drains three of the four pockets of fluid (the remaining pocket is in the area of vasculature for the flap, and he wants to leave that one alone for now).  The first pocket is large – 50cc’s, or about a quarter cup of fluid – and appears to be seroma fluid.  The second pocket is much smaller – 5cc’s – and is a little more red but thin and not cloudy.  The third pocket is the same size, but this fluid is brown, thick, and unpleasant – an obvious infection.  These are sent off to cytology for culturing, and I’m sent back to my room.

I’m switched to a third antibiotic, and on Tuesday morning the PS residents visit me briefly.  They feel my breast is less red than the previous evening, and they encourage me to go home to continue the antibiotics and rest in an environment with fewer infectious risks.  By 11:00 Ken and I are once again back on the way home, and I plan to rest and wait for improvement over the next few days.

When I get home I realize the front of my shirt is lightly wet, and when I check the mirror I see a pinhole-sized opening in the flap scar, and drops of fluid draining out.  My breast is so swollen and painful I’ve wondered if something like this would happen eventually.  A quick call to the surgeon’s office and I have instructions for care (“cover it gentle with a sterile 4x4, but if it starts to leak a lot of fluid you can always use a maxi pad.  And we’ll see you on Friday for a follow-up.”)

I spend Wednesday morning resting quietly, then visit with my friend K who brings me the most delicious home-baked lavender shortbread, two beautiful healing crystals, a loaf of European bakery bread to soothe my tender tummy, and a thoughtful bracelet with an Om charm.  We chat about her recent family vacation and though I’m tired, it’s nice to be up and around and feeling kinda-sorta normal.  Stephanie and Josh stop by, too, just to check in, and Michael and Tori pop in later to help with a lawn-mowing project.

I get a call from the PS office to let me know they’ve discovered the bacterial infection in my breast – a superbug called klebsiella.  In addition, they tell me mine has an enzyme that makes it resistant to but a few antibiotics.  They call in a new prescription for me to start taking that very evening, hoping that by Friday we’ll see some improvement.

Thursday I sleep most of the day; my tummy is upset and my appetite is completely gone.  I decide to take this opportunity to simply listen to my body and do what it needs me to do to aid this healing process.  In between long naps I try to nibble on something but my stomach wants to reject anything I put into it, except water.  My fever spikes to 101.7, but the pain meds have Tylenol in them, and I find that helps bring it down.

I’m not feeling confident about improvement at this point.  Lucy is angry – as in very red, hot, and ugly looking.  Her skin is so full of fluid she’s “denty” – push on her and the imprint will remain for several minutes.  The weight is almost unbearable, so when I walk I gently cradle her in my hand to lessen the stress and movement.  And I know there’s still a great deal of fluid inside the tissue somewhere, as every time I move positions I feel rumblings and tumblings.  My frustration and fear starts to boil over and I find myself in a weeping heap in the recliner.

Friday morning my breast is no better, but possibly no worse.  It’s hard to tell as it’s just overall so awful.  Ken and I make our way to the follow-up appointment with the surgeon’s PA.  I express my concern about the lack of improvement, and she agrees that more might need to be done.  The medical photographer comes in to take a highly-detailed and properly-exposed photo to accurately document the color and texture of the breast.  After sharing this information with Dr. M, the PA returns and gives me the option of returning to the hospital for further testing and observation.

As much as I don’t want to go back, I am happy to have this option, and once again we make our way back down the well-travelled path to UofM.

Late Friday I have another ultrasound; more pockets of fluid are discovered.  Today, we meet with the Infectious Disease doctors who recommend a new, broad-spectrum antibiotic to hit any other infections that might not have cultured, but may be lurking.  They also recommend replacing several drains into the pockets of fluid, but leave that decision up to Dr. M.  Later on the PS resident stops by and very quickly and painlessly makes larger the small opening in the nipple incision, drains the fluid that’s been leaking, and packs my cavity with gauze.  He doesn’t seem to think Dr. M will want to do the drains, but will discuss it with him further.

So here I am, again.  I feel as though there’s been a little positive progress.  Lucy’s not feeling quite a heavy and full today, although she’s still pretty red and angry.  My hope is that tomorrow will bring more evidence of good things happening, and I’ll be able to get out of here quickly, but only once we know we’re on the right path.

Besides – pudding.

I Loved Lucy

Surgery is behind us, and I’m well into my recovery.  I’ve been instructed to take it easy and do very little during this time off, and have multiple restrictions on lifting, moving, and physical activity.  Now, “time off” sounds wonderful, and eight weeks recovery time off sounds a little like heaven, right?  Except you can only nap, read, watch bad TV, nap, walk the block, nap, grab a snack, nap some more, then take another nap just so many times before you start to lose your mind.  Anyone who knows me even a little bit also knows that the hardest part of this recovery is “taking it easy.”

(My apologies in advance for the length of this blog post.  Brevity was never my strong suit).

The surgery itself went smoothly, and was a rousing success.  Surgery day starts early – 4:30 a.m. to be exact, so we can be at U of M by 6:30 am.  We check in with a smiling, chipper (and highly caffeinated, I suspect) admin.  She sees my doctor’s name and smiles coyly.  “He’s a great surgeon,” she says, “And, you know – a man knows what we need when it comes to this kind of surgery.  You’re in great hands.”

Good thing I have a man to tell me what I need to do with my breasts…....  Ugh.  I realize my non-caffeinated, nerve-wracked, sleepless and unhappy ass just isn’t in the mood for crap this morning, but I don’t want to go into this with negative energy so I take a deep breath, appreciate her comment in my heart, and smile.  I’m feeling sensitive and tender, and a whole range of emotions I’m not certain of, and I’m trying not to become the ticking time bomb on the verge of explosion.

Ken and I are escorted back to pre-surgery holding, and someone later sneaks Stephanie back to be with us (the rule is only one visitor pre-surgery, but she’s charming and beautiful and someone is kind this scary morning).  Eventually the nurse comes in to start my IV.  She seems gentle and patient (as every nurse who starts an IV should be) as I point out the one vein in my right arm that works best.  She taps it several times, then asks the magical question:

“Are you a hard stick?”

I let her know that yes, starting IVs can be a challenge, and we can only use my right arm.  “But hey,” I say, “I do have my power port – can we use that?”

She’s pleased with the idea of the port and doesn’t hesitate to consider that the best option, so in an instant my port is accessed with an IV line, and no hunt had to take place in my arm to find a vein.

Little did I know that this convenience for me would be the catalyst for blame and questioning.

A few minutes later the anesthesiologist stops by to introduce herself and her team, and after a few medical history questions she turns my arm over to see the IV.

Except it’s not there, and the quizzical look on her face is priceless.

I point to the port and she says, “Why did they start your IV in your port?”

The question felt a little accusatory, as though I demanded my port be used.  She didn’t seem necessarily pleased but said, “Well, we’ll get you started with this but because you’re having surgery on your chest it’ll be in the way.  We’ll have to move it to another location so don’t be surprised if you wake up with something in your foot.”

Thank goodness they can knock me out before THAT excitement begins!

Next the oncological surgeon stops by to chat briefly.  “Come on in,” I tell him, “Join the party!”
“I think we have different ideas of ‘party’,” he deadpans.

Just trying to keep it light in the face of life-changing surgery.  Much of a buzzkill, doc?

He immediately hones in on the port IV and asks the same question:  “Why is this here?  We’re going to have to move this.”  Again – accusatory.  Really?  Whatever.  He doesn’t ask if I have questions, just lets me know the pathology will take five days and they’ll call me with the results.  He’s in and out in less than 2 minutes, and I put him out of my mind.  Definitely not inviting him to any more of my pre-surgical parties.

Next comes The Team – my plastic surgeon and five of his minions.  Two are fellows, and three are residents.  One resident named John has a large green stain on his white coat…oh, wait, that’s a Spartan on his pocket.  He’s a brave man to have wandered into Wolverine territory.

Dr. M and I chat briefly about the surgery, a routine conversation we’ve already had.  The oncological surgeon will start by completing the mastectomy on my left breast, then Dr. M and his team will move in and begin the reconstruction process.  The surgery will take several hours and they don’t expect complications.

He then pulls out the medical-grade Sharpie, and has me open my gown so he can mark me for surgery.  With my family and his team watching he creates abstract art on my body, leaving purple marks from my sternal notch to my pubic bone.  I have a large open-mouth smile on my abdomen:  a long straight line from hip-to-hip above my belly button, opening to a large dip down to my pubic bone.  Like one eye winking, my left nipple is circled in purple, and a lone tooth created by drawing a purple circle around my belly button.

My torso resembles a living Picasso.

Kneeling down, eyes belly-level, he again does the squish-the-tummy, squish-the-breast dance – back and forth a couple of times, determining how much tissue in my tummy he has to work with, and how much he’ll need based on what he needs to recreate.  He, too, is obviously and vocally unhappy about the port IV, and even though I tell him it’ll be moved after surgery starts, he’s not pleased.  With that he’s done, and the herd of doctors moves along.

Within a few minutes I’m kissing Ken and Stephanie and moving down the hall to the OR.  I’ve already had a quick injection of joy juice and I remember very little of this period except that there are many people in the OR, calling out their teams and positions.  A flurry of activity is swirling around me – instruments clinking in trays, conversations about last night’s baseball game, shuffling bodies bumping into me as I lay on the narrow table.  I try to bear witness this activity as part of the surgical experience but my brain is confused and my eyes won’t focus and I feel my anxiety level rising and I think I’ve changed my mind.  I can’t do this.  I can’t.

It suddenly becomes all to real, what’s about to happen.  I thought I was prepared.  It still isn’t enough, and I’m suddenly overwhelmingly sad down to the depths of my heart and soul.  My right hand cradles my left breast and my left hand gently rubs my tummy as a tear rolls down my cheek.  Over her mask the anesthesiologist peers into my eyes and asks if I’m okay, and all I can do it nod.  I am.  But I’m not.  And I sense that she gets that as she nods slightly and her eyes close momentarily in understanding.

That’s the last thing I remember.

Bits and pieces of recovery come back to me.  I remember being warm and cozy, Ken’s face above mine, smiling.  Very nice nurses asking my pain level (zero, thank goodness), reminding me to wake up.  I close my eyes and listen to the noises around me until I’m reminded again to wake up.  It’s 5:00…5:15…what time is it exactly?  I’m hot, this blanket needs to go, I try to push it off and the nurse tells me no, you need to keep the warming blanket on, and I close my eyes again…

It takes three nurses to move me to my room – one to push the bed, the other two to lug all of the equipment I’m hooked up to.  Once we arrive and I’m settled I take an inventory of all the balls and chains lined up around my bed:  compression sleeves on each leg, electronically hugging one calf, then the other; a Foley catheter hanging off the side of my bed; and the IV pole with my new BFF, the PCA pump with a little green-light button that, when pressed by myself, delivered a gentle dose of morphine to my now-aching body.  From neck to knees I’m covered in a warming blanket called a Bair Hugger.  Attached to a noisy compressor the size of a suitcase, warm air is forced through a flexible hose reminiscent of the home hair-dryer of my childhood.  The hose plugs into the “blanket” which is more like a blow-up pool raft, the underside of which has small holes through which the warm air (approximately 116 degrees) flows out against my skin.  This is designed to improve circulation by keeping the blood vessels in my chest open and flowing.

The nurse tells me I’ll wear this “for a few hours.”  She doesn’t tell me a “few” is actually 48.  I’m pretty sure that’s more like “many”.  Not only does it keep me warm but it sets off multiple hot flashes that make me whine like a baby.

I dub thee my own “personal summer”.

There is also a wire running from my breast to a small machine called a ViOPtix, which measures the venous and arterial blood flow in the flap.  The first 48 hours are the most critical for flap failure, so every hour the nurse will come in to check the ViOPtix.  If we make it through the first 48 hours, the next 48 hours are the next critical period, but checks will be every two hours.  The nurse also uses a tiny Doppler wand to listen for blood flow in the flap.  It sounds like a baby heartbeat, and reminds me of the ultrasounds I had when pregnant.

The head and knees of my bed are raised to keep my midsection bent at an angle, while I am forced to lay on my back.  I’ll lay in this position for the first three or four weeks as it supports the integrity of the sutures across my belly as they heal.  Long-term, I’ll be sleeping in a recliner when I get home, and won’t be able to stand straight up for several weeks.

Before letting my family in to visit, the nurses pull back the warming blanket and my gown, and I get the first glimpse of the end result of the pre-surgical Picasso drawing.  My incisions are closed with internal sutures and covered with glue to help protect from infection.  There are red incision lines criss-crossing my body, and three JP drains coming out of each side of my abdominal incision and my left breast.

It’s a little more than I can bear at this moment.  I push my PCA button just to dull the emotional pain for a while

I’m allowed to suck on ice chips and Ken is kind enough to keep me supplied.  He sleeps at my side, waking up every hour when the nurse comes in to check me out.  That first night there is no real sleep; the air compressor is loud and annoying, the IV alarm keeps going off, I’m being poked and prodded every hour.  I’m not a back sleeper and this weird head/knee angle thing is making me crazy.  Eventually I’m able to nod off for a few minutes in between visits.

On Friday morning I’m told I won’t be able to eat until the next day, in case I need to be whisked back into surgery.  By now I’m having constant “personal summers” under the Bair Hugger and am getting pissed off about the heat.  I pull back the blanket momentarily, just for a bit of relief in the middle of an extraordinarily bad hot flash, when one of the surgeons comes in to check on me.  He admonishes me for removing the blanket as though I were a child.  I can do great things for short periods of time, and since I’m still under the illusion that it’ll only be a “few” hours of misery, I fold it back over my chest.

Shortly after, the IV alarm goes off.  I buzz for the nurse and she comes and fiddles with it and it stops.  Five minutes later, it goes off again and once again she fiddles with it.  The error message indicates the IV is occluded, and she moves the tubing from the top all the way to my hand (ouch!!)  The alarm stops but as she leaves the room, it goes off again.  This time, no amount of moving the tubing shuts it down.

“I hate to be the bearer of bad news,” she says, “but I think we’re going to have to pull this IV.  And start another one.”

We both laugh in that weird, uncomfortable way of knowing that this is not a good idea.  When I first arrived in my room we discovered I had been repeatedly poked for IVs during surgery, apparently with little success.  I have bandages on the crook of my inner right arm, an obvious stick mark in the vein next to the one where my current IV is located, another bandaid on the top of my left foot, and also on the outside of my left knee.  Success was finally found in the top of my right foot, which was quickly removed after surgery, leaving behind yet another bandaid.

I mention my power port and ask if we can use that instead (I’m feeling more confident about this suggestion now, than after the pre-surgical fiasco of the day before).  The nurse agrees this is a good idea and calls Vascular to access the port.  In the meantime, she says, we’ll just remove the IV and check your ViOPtix.

In one swift movement the IV is out and covered with a wad of gauze and tape.  She moves to my left side and we listen for the little whooshing sound of the heartbeat coming from my breast.  I’m commenting about how beautiful and remarkable that sound is, when I feel something wet on my leg and look…

…to see my IV spot is bleeding profusely.  The wad of gauze is completely soaked through, the blanket is blooming with a red moonflower, and my gown is drenched.  She changes the dressing and I apply pressure to hold in whatever blood is left in my body.  Seems like a good time to get a sponge bath and change the linens. 

A few minutes later Vascular arrives and in moments, my port has been accessed yet again.  Shortly thereafter my IV and PCA are reconnected, I’ve had a lovely sponge bath and am feeling clean and happy (albeit still hot).

During the day my blood pressure falls precariously, eventually bottoming out in the low 80s/ low 40s, and my fever spikes to 101.  Luckily the port allows them to very quickly push IV fluids which, after a couple of bags, brings my BP back into a more normal range, and my temperature eventually comes back down as well.

Too much excitement for one day.  *pushes my green button*  Time for a nap.

I sleep fitfully that night, as my back is starting to hurt intensely from laying in one position for so long.  On Saturday morning at 6:00 the nurse and assistant come in to check my vitals. I am completely and utterly over this whole experience.  I’m frickin’ burning up under this stupid hot blanket, my back is screaming at me to MOVE TO A NEW POSITION, and if my legs get hugged one more time I’m going to throw a fit.  

“I need out of this bed,” I say in a fairly-snotty voice.  This makes them very happy as I should have been up and walking yesterday, but my lowered BP wasn’t supportive to walking the halls.

I’m advised to “push the green button” because this move is likely to be painful.  Within a few minutes I’m slowly, careful, and fearfully rolling over to one side and with a great deal of support, I’m sitting on the edge of the bed.  I’m tangled in a jumble of wires and tubing so all the machines are moved to the other side of the bed.  I stand and take a few slow step towards the recliner, and gently sit down.

Ta-da!!  *pushes the green button again*

Getting out of bed is a pivotal moment, and almost everything changes.  The Foley is removed, and my BFF takes a hike.  My saline drip is disconnected, but the port access remains.  The leg huggers come off in anticipation of my first walk down the hall.  In the end, the only things I remain tied to are the Bair Hugger and the ViOPtix.

This is my chance to break free of that stupid warming blanket, so I ask Ken to help me take a quick sponge bath, after which I take my first walk down the hall.  It’s surprisingly hard and exhausting, and after 100 feet or so I have to turn around and come back to the room.  I climb into bed to rest for a few minutes, and am informed I can eat again.  FOOD, GLORIOUS FOOD!!!  I’m presented with the menu and see it’s a liquid-only diet.  

“You can have anything on that menu.  Except no coffee.  Or chocolate.  No caffeine, sorry.”

What fresh hell is this?  Excuse me?  I must have misheard you.  No caffeine?  Um, yeah, I need some answers here.

Caffeine is a vasoconstrictor, which would be counter-productive to all the work we’re doing to keep the blood flowing while I’m burning up under the Warm-Air Blanket from Hell.  Unfortunately, this restriction will continue for 6 weeks as we continue to work to preserve circulation to the flap.  

I haven’t eaten in two days, and I’m on enough paid meds that the caffeine headaches are controlled.  I just don’t frickin’ care at this point.  

I order chicken consumme, which tastes like diamonds dipped in gold and rolled in glitter.  I think I might have cried just a little as the clear liquid passes over my dry throat and warms my insides all the way down to my belly.  Heaven!!

The next couple of days move quickly and I continue my journey towards normalcy.  Saturday evening I'm finally freed from the hellish warming blanket.  On Sunday I’m allowed to eat REAL FOOD, and I get up and walk three times, each a little farther than before.  Always at my side, Ken walks with me, encouraging me to be gentle and patient with myself.  My mind is ready to run a marathon, although my body is screaming to sit down.  On Monday I’m released, and we’re on the way home!!  The fresh air feels like love and I turn my face towards the sun like a sunflower seeking out the warming rays.

The next day I take a quick shower, which is far from quick but rather a lesson in patience and restraint.  I can’t twist or bend so as I sit on the shower stool Ken helps wash my back, my feet – pretty much most areas because I just can’t reach anything.  

He stands me up and helps me out of the shower, and I face the mirror for the first time, completely naked.

My body is a battle zone of cuts, scars, bruises, tubes, redness, surgical markers, tape marks.  There is a red line across my lower stomach – the smile has closed – as well as a bloody scab where my belly button has been recreated.  At the end of the abdominal incision are more JP drains.  My tummy is incredibly, shockingly flat, and I run my hand gently over my midsection.  I feel nothing.  All the nerves have been cut so I’m numb from the bottom of my ribs to just below the incision.  Over time, some of the nerve may regenerate and sensation may return, but there is no guarantee.

Lucy bears the worst of this war, two lumpectomy scars still present, other small scars from needle placements.  My nipple is gone.  It’s just – not there, even though the rest of my breast looks exactly the same.  In its place, a thin red line circles a very white piece of flesh from my lower belly.  This breast is incredibly swollen, having endured an unprecedented assault, and I’ve been assured the swelling will decrease in the next few weeks.  Comparatively, Ethel looks small and sad, as though she wasn’t invited to the party.  The long, flexible tubing of the JP drain emerges from Lucy, just under my arm, and is sutured to the tender skin.

My breast doesn’t feel any different than before surgery.  I don’t feel as though there’s something on my chest or in the breast tissue.  I reach up to cup the underside of my breast and it’s warm and firm.  It’s so surprising to me that it feels normal.

Lucy is gone, yet she’s still here.  She’s not quite the same, but that’s the nature of cancer – nothing’s ever really “the same”.   The external scars are a visual reminder of the internal battle that I’ve waged for almost five years, and I’m both horrified and pleased with what I see in the mirror.  I know that this is the beginning of the healing process, but seeing so much damage spread across my body makes me sad.

It’ll just take some getting used to.

I lay my right hand gently across Lucy, and my left hand delicately across my belly, and send them both positive energy and healing light.  They've been through hell and back to help make me feel whole again, and I am ever gratful for their sacrifices.  

No matter how you look, girl, you'll always be Lucy to me.

Guest Blog: A few of the things learned thus far

Many weeks back (okay, 2 months ago) Nancy gave me guest author status for this blog.  Off and on since then I’ve jotted notes, talked out loud to myself (more than usual) while driving alone in the car wondering what I could offer.  You all know I have a pair of very tall stiletto heels to fill.  What do I say?  How do I say it?  When I stopped over-thinking things, it came to me.  Write what you know.  So I share with you some of the things I’ve learned walking alongside Nancy’s left breast on her cancer journey.

I first met cancer a long time ago.  Cleaning up the kitchen after dinner last Thursday evening the faces of three people I knew years back tumbled before my eyes.  The middle-aged man on the oncology unit at Hartford Hospital where I was assigned in the summer of 1980; who told me some of the best clean jokes (“stories” he called them) I’ve ever heard.  Chemo was inpatient then.  I saw him every day he was there.  “Hey, I got a zinger of a story for you,” he’d say and I knew that he needed an audience to help him laugh and he needed to laugh to get through the mine field in front of him, even as his hospital stays became longer and longer and…..  The friend, mid-treatment for breast cancer, who took in a soon-to-be homeless 15 year-old with a 6 month-old daughter at my request; the two became part of this family because no disease can get in the way of real caring.  The woman in my church, statuesque, who seemed to see every moment with the wide eyes of a young child and shared her excitement with everyone she knew because dammit she wasn’t yielding the wonder in even a second of her life to this disease.  Who each one of you is for me today is so much more than I could have imagined you’d be when we parted 30-plus years ago.    

There is no cure.  Isn’t one round of cancer too much for any lifetime?  When we got the diagnosis this time I was a jumble of emotions.  I thought this stuff was bombarded and it’s only been four years and she’s training for a half-marathon we’re both going to run in Wisconsin in May and we have a new grandchild coming in June and now you’re saying that the Emperor of All Maladies is roosting again inside the woman who completes me and she’s going to have poisons injected into her body again and surgery after that?  Dammit!  When I’d finished a few long and loud therapeutic screams in the basement at a time no one was home, I realized I really wasn’t surprised.  Nor was I really surprised when we found out the Emperor had a much nastier demeanor this time than last.  Early in the first go-round I came to terms with the fact that cancer’s a sneaky lurking disease.  Surgically remove it.  Flood it with targeted pharmaceutical potions.  Fry it with photon radiation.  But no oncologist ever hands out “cured” cards once treatment ends.  They know the truth.  No cure exists.        

Some of what worked before will work again.  One of my roles was, and is again this time, “designated scribe”.  Four years ago we bought a red notebook and I took down all the information we received at every appointment and treatment.  Although I never wanted to look at it again, the same notebook goes with us again now.  Sometimes important information can be forgotten.  Being the scribe also keeps me from fidgeting, spinning around in chairs, or getting my hand slapped by my wife for playing with the medical equipment.  Comedy aside, it helps me stay grounded.  One’s feet need to be firmly planted when facing a foe with someone you love, even if a brief cold sweat comes on every so often.

I have a peeve.  Being called a “caregiver” rattles me a little.  I’m a husband and my wife’s being treated for cancer, and I do what I do for her because of who she is to me and who I am because of her, which goes worlds beyond anything I can understand or even a label.  Maybe that’s why I feel uncomfortable when others – with true well-meaning kindness – tell me how wonderful I am for doing what I do for her during treatment.  I’m not the one going through this first-hand, though I wish it was me and not her.  I do nothing more than any husband with an ounce of integrity and love would do.  I do far less than many others are doing or have done.  I deserve no accolade.  Instead, give it to those who have truly earned it: The little ones I see at Relay for Life who are wearing the t-shirt that says “Survivor”; their Moms and Dads who hold their hands or push them in their strollers during the survivors’ lap.  (Ken tips his hat in gratitude for allowing him to “peeve” all over the page.)

They share something together that we can’t possibly share with them, no matter how close we are to them.  We’re at Lowe's on a summer Saturday, in the outdoor gardening section, debating how many bags of something or other to buy.  “You don’t mind if I ask”, the silver-haired gentlemen says to Nancy, “but are you in treatment?”  (The hairless head gave her away again.)  “Yes, I am” she replies.  He had chemo many years ago, he tells her.  They chat.  His wife and I look on as if we’re watching two veterans of different yet equally vicious military campaigns reminisce about something we’ve only known second-hand.  And it’s obvious that when she talks with her “cancer lady friends” or with someone she meets for the first time in the oncology waiting room for their second treatment, that there’s a connection that only they have.  Of course not everyone’s cancer is the exact same, even if it’s called by a similar name (breast, lung, colon, etc.).  And even if they might be exactly the same and treated in the very same way, not all of them will respond alike.  Still, there’s a knowing and understanding those with the disease (in treatment now or with no evidence of disease for years) seem to share.  And sometimes it’s there without a spoken word between them.

Never yield…Ever.  Emperors are vengeful.  Cross them, send them retreating, and you could be in for another fight, maybe bigger than the last one.  Meanwhile, they try to control you with fear.  “I’m coming back, and I’m taking everything you have; and when I say everything, I mean it!”  Cancer, this Emperor of All Maladies, is the master of fear.  We crossed him once, he’s back again, and there’s no predicting where things go from here.  But living in fear and trying to control what we ultimately can’t control is surrendering to the emperor way too soon.  Fear robs us of our joy.  Fear blinds us to everything that’s wonderful in this present moment, and the next.  Things like dinner outdoors with friends on a summer night while listening to a band play 80s music, spending time with grandchildren and planning a trip to see a newborn grandchild, having Sunday lunch on the porch of a winery, a weekend in Traverse City with no particular place to go, following Le Toure de France each day (and wanting to go watch it live), basement demolition, gazebo construction, margaritas in said constructed gazebo, one playing “straight-man” to the other’s comedian for countless cashiers and wait-staff, “cancer humor” that would shock others so we keep it to ourselves, Sunday kayaking and racing each other up the river, that first kiss in the morning and the last before sleep covers us in dreams.  Surrender any of those to the emperor?  Hell no!  Never!  Ever!  
  
Special thanks to Siddhartha Muherjee, MD, (author of “The Emperor of All Maladies: A Biography of Cancer”, Scribner Publishing, August 2011) for inspiration; Haylee Westenra, ABBA, Crosby, Stills, and Nash, Linda Ronstadt, and many others for their music while blogging; and my Nancy who probably never thought I’d finally get this done.)

The Price of Free

My last chemo was four weeks ago – four weeks!!  Most days it felt like it would never end, and yet now that it’s over I can look back and say, “It wasn’t that bad.”  In hindsight, it really wasn’t that awful.  Rough days?  Yes.  Painful and unpleasant?  You betcha.  But you do what you have to do – everything you can – to keep this beast from coming back, so in that sense it was wonderful.

We celebrated my final chemo with nothing special in particular – no Boob Fairy, no crazy wigs - none of that.  In the last four years my path has crossed with too many people living with end-stage cancer; they will spend the rest of their lives getting chemo, hoping and praying that this treatment will be the one that gives them respite, perhaps remission for a few weeks or months or maybe even years…  And I’ve come to know too many women for whom chemo failed them, and they are no longer with us.  So while I was glad to be done with this phase of treatment, I didn’t feel a reason to celebrate this time.  When the nurses blew bubbles in my direction as Ken and I left the infusion center for the last time, the moment was anticlimactic and a little scary.  I’d been down this hall before (last time in a glitter-and-pink tutu) and yet here I was again.

In Breastlandia, there are no guarantees.

My hair started growing back a couple of weeks before that final chemo.  Like an angelic halo resting upon my head, the white hair is short and sparse and wispy, yet it catches the breeze and I feel it move softly with the wind.  The next day I got up and ready for work, rushed out the door on the last morning of steroid high, eager to get as much accomplished as possible, knowing that Frickin’ Friday was just around the corner.  About half way to work I reached up to scratch my head, itchy with new-growth hair…

…and realized I’d forgotten to grab a hat.  Or scarf.  Or an ugly wig.

This happy accident is how I decided to stop color-coordinating my wardrobe and head coverings, and simply go topless at work.

It was surprisingly uncomfortable that first day – for me, and I suspect even for a couple of others (though I could simply be projecting my own insecurities on to them).  I mean, it’s been pretty obvious for the last few months that I’ve been having a Bad Hair Day – or rather a No Hair Day – as pretty head coverings became my fashion statement.  I only wore head coverings at the office, nowhere else; the moment I made it to the car my hat or scarf came off and my scalp welcomed the sunshine and cool breeze.  But that lack of head covering, the naked baldness, left me feeling incredibly vulnerable and aware those first few days.  My first meeting was agonizing; the first encounter at the elevator with a group of coworkers was intimidating; the moment I came around the corner to chat with a friend was a little scary.  But I continued onward, and now, four weeks later, I’ve worn a scarf only twice (and that was because it looked freakin’ awesome with my outfit!!)  No one seems to bat an eye anymore, and while I can reaction-watch from behind my giant sunglasses, I don’t bother to know or care what others think.

Except when they feel the need to tell me what they think.  For some reason, my baldness gives some people a boldness to say things they might not otherwise say in polite conversation.  Or, at least, that ain’t how my mama raised me.

You may have noticed I tend to use humor to deflect those hard and painful emotions.  All the feels, and all that stupid stuff.  There are so many simultaneous and conflicting emotions that sometimes I simply don’t know what I’m feeling.  Or I don’t want to admit it, show it, or deal with it.  As time goes on, I find myself more closed off and less inclined to want to talk about (much less think about) what it is I’m feeling.  It’s part of why writing these blog posts has been such a challenge – I’m kinda-sorta over the whole, “Oh, I have cancer…again…” crap.

Because sometimes, the conversations go something like this:

Friendly-but-not-friendy coworker:  “Hey, how are you feeling?” <insert sympathetic sad-faced look here>  “You look…great, really.  Are you still doing chemo…?  No, you’re done?  That’s great!”

Me, trying to be friendly:  “Thanks, yeah, I’m glad to have that behind me.  Onward and forward!”

Her:  “Did you have surgery yet?  My friend had surgery when she had breast cancer – cut off her boobs, both of them!  Are you cutting yours off?”

Me:  *blink-blink*     *crickets*    “Um…well, no not really…  I’m having surgery in a few weeks…” (Wait, why do I feel the need to answer these questions??)

Her:  “You should just cut them off, you know...”

(at this point I’m trying to figure out how to end this conversation in a friendly-but-not-friendy way…and once you’re at the bottom of the well like Desmond on Lost, you’re only going to be rescued by a smoke monster or a golden retriever…)

Instead, I take a deep breath and decide this is an Opportunity for Growth and Learning, so I hear myself gently explaining that a double mastectomy is huge surgery, isn’t always necessary, sometimes it’s a choice…

“But you get a free boob job out of the deal, right?”

And there’s this moment of conflict – my heart is breaking because I’ve paid a pretty frickin’ high and hefty price for this “free boob job”, and my head is screaming to MAKE A JOKE, SAY SOMETHING STUPID AND FUNNY or the tears are going to roll down my face and I’m going to be standing here in the sixth floor kitchenette, bald and vulnerable and exposed and topless on a thousand different levels, and the only thing I can think of to say at that exact, painful moment is,

“Yeah.”

And I walk away.

I can’t be mad at her – I’ve used those exact same words, that same emotion, when describing the need for my mastectomy.  Then, when I finally chose the DIEP procedure, I’d throw in the fact that I’d also be getting a “free tummy tuck” out of the deal, too.

Sounds funny in my head.  Not so funny when I hear it coming from others.  (And yes, those are the words people use in conversations - “cut ‘em off” and “get rid of them” and “they’re trying to kill you!” and “if it were me I’d do it in a heartbeat” and “why would you even think twice about it?” and a multitude of other comments that are both incredibly insensitive and brutally honest).

But I set the tone for these conversations.  I’m responsible for how they go, and for how I respond.  It just surprises me how I can feel so many different things all at once, and I recognize it’s my own personal grief process getting in the way of the words coming out of my mouth.  Much easier to respond, to joke, to set a tone I dislike, than face the very real and very painful emotions that come with this necessary but difficult decision to remove an important and vital part of my body.

Even now, with all I’ve been through over the last four years, I find myself shaking my head in wonder and confusion, still shocked it’s come to this.

On Frickin’ Friday we get the call that surgery is scheduled for July 21st - unilateral mastectomy with immediate DIEP reconstruction.  The DIEP flap procedure – or Deep Inferior Epigastric Perforators surgery – is an autologous tissue transfer.  It uses a flap of abdominal tissue – skin and underlying fat, as well as blood vessels – to fill the empty pocket of skin that will remain after the breast tissue is removed from Lucy.  The oncological surgeon performs the mastectomy, removing the breast tissue through an incision that also removes the left nipple (“the”?  “My”.  For now it’s still “my left nipple,” dammit).

Once the mastectomy is complete, the plastic surgeon moves in and makes an eye-shaped incision across my lower stomach to harvest the necessary tissue.  After removing a small portion of rib, the blood vessels from my abdomen are micro surgically attached to vessels in my chest; this keeps the tissue alive and healthy.
The entire surgical procedure itself is long and complicated – typically 8 hours.  The first couple of days post-surgery will be in the ICU, with a total of five days in hospital.  This allows the surgeon to monitor the breast tissue for signs of rejection, necrosis (tissue death), or infection, and perform immediate surgery if there are any complications.  Additionally, the abdominal scar is large and poses its own challenges.  It is, in essence, an abdominoplasty (or, in layman’s terms, a tummy tuck).

I’m a very visual person and couldn’t really comprehend the size of the abdominal incision until a fellow DIEPer suggested I take the tips of my thumbs and place them on the top of my hip bones – that pointy area that’s pretty much on your sides.  That is the width of the incision.

Kinda feeling like Humpty Dumpty falling off the wall…..

Unlike a “boob job,” breast reconstruction after mastectomy is very rarely a “one and done” procedure.  For me, this is the first of potentially four procedures (possibly more, possibly fewer, depending on complications and choices I make along the way) to complete the reconstruction process.  There will be scar revisions of my breast and stomach; fat grafting and maybe a lift of Ethel for symmetry; a surgically created nipple and areola tattoos.

Here's to hoping my plastic surgeon can put this cracked egg back together again.

Also unlike a “boob job,” recovery from this surgery is a long and complicated process.  After five days in hospital I’ll be released home with drains, a body wrapped in compression garments, a recliner to sleep in for a few weeks, instructions not to stand up straight for at least two weeks, no lifting, heavy moving, twisting, stretching, or reaching, and NO driving.  If all goes well I’ve been told I could be at “75% at 6 weeks,” and my plan is to return to work at eight weeks.  Fingers crossed for no complications like tissue death, incision opening, infection, or whatever else could potentially go wrong.

So yeah, it’s a free, insurance-paid-for boob job, with a tummy tuck and a little lift for Ethel.

I’d give anything to have two natural, saggy boobs and a tummy pooch from childbirth and dating Ben and Jerry, instead of “cutting them off.”

I’d do anything to not have to make this choice, even when the choice was pretty much made for me.

I’d pay anything not to have to pay this price – with my body, my time and energy, my spirit, my future.

Nothing’s ever truly “free.”

Be Present

The alarm goes off at 5:00 am this morning, and I roll over to see the sun preparing to rise outside, listening to the birds already singing out their morning wake-up calls.  I close my eyes again and sigh, inhaling deeply – spring is finally in the air.  I take a moment to appreciate the moment and a new morning, before my eyes fly open and I remember the day.

Another Manic Monday.

I got a call last Wednesday afternoon from UofM to discuss scheduling an appointment with the surgeon who would be performing my mastectomy.  After a brief conversation with Betty regarding my current treatment status and recent scans, she informed me they wanted to see me next Monday for – again – the All Day Clinic.  But before they could do that, they needed my two most recent CT scans – on disk.  And while UofM can get electronic reports from my hospital and oncology center, they cannot get images and scans.  No – I would need to pick them up from my hospital and bring them to Ann Arbor, preferably NOW, so they could be loaded into the system and the radiologist could read them prior to tumor board and clinic the following Monday.

What I don’t tell Betty is that when she called (at 1:30 in the afternoon) I had just stepped into an important meeting with my director, only to politely step out to take her call.  I am all kinds of annoyed.  Seriously – you need them today?  I ask if I can bring them tomorrow and Betty says they need to have them today to have them uploaded tomorrow, so no – they need them tonight.  Or, more precisely, before the office closes at 5:00 pm.  I mention where I’m sitting at the present moment (looking out my sixth-floor window and wondering if I could magically grow wings or learn to teleport in the next few minutes) and I hear the crickets chirping at the other end of the phone.  I sigh, and promise to have the disk to her by 5:00.  In turn, she promises to call me later in the afternoon with the time of the appointment on Monday.

I call my hospital and ask for copies of the disks; they can’t guarantee they’ll be ready by 3:00 but they’ll do their best.  I return to my meeting, beyond frustrated.  I can’t concentrate on the task at hand because my life is once again disrupted by cancer and inconsideration and rudeness and poor planning not on MY part…  *sigh*

I reach for the chain around my neck and stroke the pendants that hang there every day, and protect me every night.  I breathe deeply, I let it go, I get back to this moment.

Leaving work at 3:00, I fly (alas, not literally) to Jackson to pick up the disk, and arrive at the Cancer Center at 4:45 pm.  Surprise – everyone except the intake receptionist has left for the day, including Betty.  So – I probably could have gotten the disk to her at 8:00 am the next morning, but okay, I’m already here and the task is done.

Success.

Whatever.

Late the next afternoon I receive another call from a friendly voice at UofM, reminding me of my appointment at 9:45 on Monday morning, and another appointment at 2:30 on Monday afternoon.

“I don’t have an appointment yet,” I say to the caller.  She informs me the appointment was made late yesterday afternoon and I was informed of this via phone call.  I really, REALLY want to argue with her – nay, I want to bitch-slap UofM for that poor planning and inconsideration thing, but instead I just let it go…

Two appointments on Monday, five hours apart?  I ask the caller if there’s any way the appointments can be closer together so I don’t have to take an entire day off work.  “No, sorry,” she says.  “It’s Clinic Day, that’s how the appointments are scheduled.”

Clinic Day?  No, no, no…no.  I did Clinic Day three months ago, for the second opinion.  I don’t need to do another Clinic Day – do I?  But after talking with yet another scheduler, I am informed that yes, I do need to do another Clinic Day, which will start with a mammogram at 9:45 am, and a meeting with my surgeon Dr. S at 2:30.

I laugh out loud.  A mammogram to see the cancer that has never, ever, EVER showed up on a mammogram – not the first time, not the second time, not after a wire was placed directly into it.  I tell the scheduler this, she doesn’t seem to care.

So basically this will be a waste of everyone’s time.  And a half day off work I just can’t afford to take.

Can’t wait to say, “I told you so.”

I spin around in frustration, fire off a nasty text to Ken to let him know he needs to up-end his whole world, too, and after a minor temper tantrum I set myself straight and get back to work.

Friday through Sunday Ken and I spend in Traverse City with Stephanie and Josh.  We relax, we splash in the lake, we explore restaurants and vineyards and distilleries and downtown shops.  We drink, we laugh, we get sunburned.  But most of all, we Live.  In the quiet moments in between, in the joy of simply being together, we live beautifully and fully, grateful for and present in each and every moment.  Sunday afternoon comes much too soon and our mini-vaca ends – but I take the happiness home in my heart.

Today was Clinic Day.  The first mammogram ended with – surprise – nothing showing up.  An hour later the second mammogram – different machine, different angles, more pain and frustration – and hopefully something showed up.  I was never told.  Three hours later we’re released for lunch and a quick visit with my parents, and then we’re back at 2:30 to meet the surgeon.

It’s a quick meeting, meant to discuss the mammogram and schedule the upcoming surgery.  Instead, we’re told the surgery can’t be scheduled until their radiologist has a chance to compare and contrast the two most recent CT scans.

Disks of which I dropped off five days ago.  Because it was urgent they be loaded into the system on Thursday in preparation for this very moment.

Uh-huh.  Well.  Okay.

The problem lies in two areas on the new CT scan that are confusing and require further evaluation.  Long story short – Ken and I met with our oncologist a week ago ostensibly to discuss a transfusion.  Bloodwork showed my hemoglobin was really low, but not quite at the point where he wanted to do a transfusion (so no goblins for me!)  He did, however, bring up the CT and pulled out the results.  He let us know he contacted the radiologist directly to discuss the report and asked for an addendum.  Good news – everything that was there before, is now gone.  The radiologist attributes previous lung lesions to inflammation/infection and radiation fibrosis.  His report noted no hilar or mediastinal lymph nodes present.  On the other hand – there’s a new lesion in the lung.  And an area in the anterior mediastinum that was previously 1.3 cm (which, in the previous report, was noted as being a mediastinal lymph node) that is now 1.6 cm.  The radiologist gives lots of radiology-speak and ultimately determines this could be a goiter (holy cow!!)…..or a mediastinal lymph node.  But……you just said there were no enlarged lymph nodes……to which my oncologist replied, “I’m not a radiologist, I’m not sure what this means, but if another radiologist were to give you an opinion on this, I’d be happy to hear it. For now, I’m not concerned.”

Well okie-dokie then – we won’t be concerned, either.  But thanks for the suggestion – we’ll be bringing this up with the radiologist at UofM…

…which brings us right back to where we are right now.  Besides the goiter/lymph node thingy in the middle of my chest, UofM is also concerned with an area in my left axilla – under my arm where lymph nodes were previously removed to check for spreading cancer.  The radiologist notes a 1.5 cm area that “could be a seroma, or a hematoma, but a lymph node cannot be ruled out.”

Erg.  We got answers…but also maybe a couple more questions.  Or, at least, more stuff to explore.

We’re not concerned, or worried, or afraid, or even Going There.  Because it’s too important to focus on and be present in this moment, right now.  We smile and say, “Okay, sounds good,” when the surgeon promises to call in a couple of days with a surgery date, after the radiologist has reviewed and consulted on the films.  We’ll hear from him when it’s time.

We drive home and talk about tomorrow – the sixth (and final!!) chemo.  My mother asked me earlier if I was excited, and without thinking I say, “No.”  Ken and my father laugh in understanding; my lovely mother was confused.  I smile and tell her gently that yes, I’m excited for it to all be over with, but no, I’m not looking forward to going into those days of feeling really crappy – even if it’s the last time (I swear it’s the last time).

I notice myself stroking my pendants again.  I breathe deeply and consciously let go of the dread and fear about tomorrow, and instead focus on the beautiful day that is unfolding as Ken and I drive home.  Blue skies punctuated by fluffy white clouds to our left, dark clouds swooping in to our right.  Raindrops fall from time to time as Ken and I alternate between chatting, and silent thought.

Stephanie made this pendant for me last weekend; her friend K mentioned that during yoga class I talk about being “present in the moment”, and that it’s a challenge we struggle with every day. The past is already gone; we cannot change it but we can learn from it.  We can plan for but cannot control the future, and even the best laid plans can go awry.  All we have is this moment, right now, in which to live fully and freely.

So when I feel the frustration setting in about having cancer yet again…or the need to influence the appointments and surgery and every moment of every day, I am reminded to Be Present.  In those moments I am able to breathe deeply and freely, and can let it all go, finding much joy in the moment. There is a sense of freedom and peace in accepting that I have little to no impact over those things that are not in my control.

This is the gift of the present.

Tomorrow is another day.

Time to Play Catch-Up

*spoiler alert*  I'm having a particular challenge with chemo brain of late; I can't promise that anything I write below will make any sense.  My apologies in advance.

Squirrel.

I've started a few blog posts but quickly abandon them as they became...well, not what I wanted to say, rather what I felt compelled to say.  Sometimes, I feel like I've already "said everything" the first time around and I wonder why I continue to write.  I post complicated and confusing treatise about the technicalities of how cancer changes - even with jelly bean visuals, it's less about my experience and more about how I got here...which is guess is how the journey began, so maybe it's relevant...

Well shit.  Maybe I'm just lazy.  Or overwhelmed by all that seems to be happening at this point in the game, so much so fast, and yet everything moves at a snail's pace.

Begin at the beginning, I suppose.

Three weeks ago was chemo round #4 of 6 - well over the hump and on my way down the other side.  Two more to go, finish line in sight.  It was a low-key, run-of-the-mill chemo day with a twist - post-appointment brunch at Bob Evans instead of Bennies at Chilango's.

We met with our oncologist before chemo and discussed the Past, Present and Future.  I'm tolerating chemo fairly well so far; no serious infections or other problems since that first awful round.  While the third round of chemo brought another (slightly milder) case of folliculitis, nothing else exciting.  I did learn, however, that I have a significant case of anemia, which helps explain why I've been so tired lately, and why running and even yoga has become more difficult to endure (and remove some of the guilt I've had about decreased energy).

My MO recommends red meat (which I don't particularly care for) and spinach, nuts, eggs, cheese to increase my iron intake.

Swell.  This doesn't necessarily jibe well with my current low-fat, high veggie and fruit diet so necessary in battling TN breast cancer.  But I relent and promise to increase my iron intake - anything to help me feel less exhausted.

I ask about the CT rescan.  If you remember, I had a CT just after diagnosis but prior to excisional biopsy, ordered as a "staging" scan, ostensibly to see the size of tumor in my breast as there was confusion between what we could feel, what the ultrasound showed, and what the core biopsy samples revealed.  The CT also revealed two mildly enlarged lymph nodes - one hilar, one mediastinal, which sit in the middle of my chest behind my brestbone - as well as a lesion on my left lower lung lobe.  There is a nodule in my right lung that's just hanging out and no one is concerned at all about - it's small, doesn't appear to be interesting, and apparently nodules in lungs are not uncommon.  Confession time:  for those who don't know me well, I am a former smoker (we all do dumb things in our youth...and maybe again when we get older...but then we wise up and stop being dumb, at least about smoking) so it's possible this is related to that...or to breathing the air...or being alive...lung nodules are not uncommon and are not a concern until and unless they become larger than 1 centimeter, or begin to change over time.

Oh, look a shiny squirrel.

We decide to do the CT scan after chemo #5, so that we can discuss the findings at our last appointment three weeks later.

No professional I've encountered has seemed the least bit concerned about what these things - called "incidentialomas" because they were found incidentally on a scan meant for something else - are, or what they represent.  Not my surgeon, not my MO, not even my second opionion docs at UM.  My radiologist, however, keeps sending me nastygrams in the mail insisting I follow up on these "concerns" with my doctor, which I do - except (as already stated) he doesn't seem concerned.  But he also really does want a rescan - I don't have to twist his arm about this.  Hmmm, Sherlock (*slowly stroking chin with one eye squinty*) - What does this mean?  He tends to keep things close to the vest, so I'll have to wait this one out.  In the meantime, until it's something, it's nothing, and that means I leave it at the clinic door and move out into the sunshine and warm air (which, as we all know, turns to snow a few days later....and the squirrel thinks it's time to hibernate except I keep petting it and calling it Sally, and now it can't escape...)

A day after chemo #4, I catch a new-to-me curveball:  unrelenting nausea (even warm Vernor's wasn't touching this).  The presecription meds can (and for me, DO) cause wooziness; taking it makes daily functioning a bit of a challenge, and that includes the commute to work, enduring countless meetings, staring at spreadsheets for hours on end, and driving my happy ass back home.  It's at moments like this that vomiting and diarrhea actually sound preferable in some perverse way.  Alas, those never materialize, but by Friday the nausea is gone.  Just in time for the highly anticipated Day In Bed, which bone and joint pain and an excruciating headache, thanks in large part to the Neulasta.  The next couple of days are rough, as excepected, but by Monday I start to feel more normal (as normal as a girl who keeps a glittered squirrel by her side).

On Monday I meet with the genetics counselor at UM.  Her role is to record my family history of birth, death, illness and disease, and complete a complicated genogram.  From there we determine whether there is reason to continue forward with blood work to test for breast cancer-related genetic testing, including BRCA1 and 2 tests.

Except, as I point out to her and her lovely student assitant - I've already had the bloodwork completed, and the report returned a few weeks ago.

She is genuinely surprised by this turn of events.  A quick scan of my file reveals no report.  I explain it was completed at UM by their path department; she goes to look for the report, leaving me with the student who is uncomfortable and wants to ask questions but instead we spend a few moments in silence.  The counselor returns and says she cannot locate the report.  Instead we spend a few moments discussing other genetic variations I had not already been tested for, and after reviewing my familial history she mentions something that stands out to her:  my grandparents are of Russian, Polish, and English decent, having emigrated to the U.S. in the early 20th century.  She explains that the CHEK2 mutation is often found in those of Russian/Polish/Northern European descent.  We discuss, I ask questions, and in the end I decide to send another blood sample off to Ambry to determine if there are other variations we need to be concerned about.  It doesn't make a difference to me, but I'd like to know for my childrens - and for their children's sake.

On Friday we meet with our intended plastic surgeon, Dr. M with UM.  He is gentle and kind and incredibly both personable and professional.  He knows I am interested in doing a unilateral mastectomy (Lucy, you got to GO girl!), and that I don't want implants.  His specialty is DIEP flap, which harvests tissue and fat from the belly and places it in the empty breast cavity.  There are pros and cons with this - as with any  surgery.  The pros are a natural-feeling breast that will have warmth, be soft, and look very similar to my other breast (eventually).  It will gain and lose weight as I do.  It won't look round or unnatural, as many implants often do.  The risk of infection and rejection is far less than for implants as there is no foregin body involved.  And, yes, the bonus of this surgery is a tummy tuck of sorts (although having cancer isn't nearly a good enough reason to get a flat stomach, so I'm on the fence about whether this is a pro or a con).

Then again, on the con side is the length of surgery - 8-10 hours and two surgeons.  A 5-day hospitalization, with a two-week at-home recovery during which I can do very little. I'll have three drains to wear for those couple of weeks, too - two in my belly area, another in my breast.  No showering while the drains are in (*insert sad, icky face here*)  Because of the extensive abdominal surgery and arm limitations, getting in and out of bed is a challenge so it's been recommended we get a recliner for me to sleep in.  Dr. M. shares that it will be very important that I don't stand up straight for at least a couple of weeks post-surgery, as the hip-to-hip abdominal incision needs time to heal.  He also explains I could be back to 80% by 6 weeks and return to work at that time, or I could wait a couple more weeks "just to be sure".

So - eight weeks recovery.

But wait - there's more.  As in, this is not a "one and done" surgery.  Three months after the first, I return to Dr. M (who, besides being incredibly kind and personable, also looks incredibly like Taye Diggs, which makes listening intently to all he has to say both easier and a bit of a distracting challenge at times...Sally, get out of here!!)  The second surgery is an outpatient revision surgery to clean up any scars that need work.  In my case that second surgery would also likely include a breast lift on Ethel, for symmetry's sake.

As I stand there with my top open for Dr. M to review the girls, he looks from left, to right, to left, and back to right again.  He gently grabs my belly flab (thank you Ben and Jerry!!) and says, "which one are we trying to match?"  I already know what he means.  My left breast - with all the tissue removed from biopsies and lumpectomies, enduring 6 weeks of radiation - is actually larger and more firm than the right, which has developed a sad little sag and a slight downward tilt to her nipple (I'm 52 and have nursed children - it was bound to happen).  Dr. M has enough tissue to create one breast, but not two.  He offers there are other options to create a second breast, should I desire that - using tissue from my inner thighs or my upper buttocks.

What - no more chubb rub?  No more Kardashian-like butt shelf from which I can easily serve drinks?

Sounds like an awesome idea - except I've seen the surgical photos and the thought of more extensive surgery just to have Ethel as perky and popular as Lucy seems like a lot of work.  Instead, Dr. M suggest we could do a lift and fat grafting (aka liposuction) from those areas, into Ethel, to achieve more symmetry.  I'm comfortable with these ideas, and know that we'll know more once we get through the first surgery.  This only requires a two-week recovery period, and hopefully no drains.

The third surgery, six months later, is to create nipples using the CV flap.  And the last surgical procedue would be to have the nipple tattoed back on - Dr. M. PA apparently is an incredible artist.

It's a lot to process; petting Sally seems to help calm my nerves and keeps me surprisingly focused (even if I end up covered in glitter).  In discussing all of this with Ken, I realized the root of my anxiety comes not just from the fear of all of this surgery (it's a lot - like a LOT of time and energy and attention, and time off work, and recovery, and who knows what the ultimate outcome will be?  And am I worth all this trouble and time and $$ and energy - why can't this just be over?!)  but the reality that this dance with cancer will end far differently than my first - more complication with fewer choices.

And that's when I sort of shut down and just ignore the fact there's a big, fat, glittered squirrel in my living room that's rather needy and eating all the damned chocolate.

In the meantime, life goes on.  We have a Thank You BBQ for those who helped with basement and shed demolition, that ends up as a snow-covered dumpster toss.  Sally subtly suggests that if we're going to drywall the basement, we might as well tear out the ugly drop ceiling in the kitchen...and maybe add that over-oven vent we've been looking at...how about new countertops?  I continue to run but am finding it becoming more difficult with passing days - breathing heavier, legs like lead, shin splints and exhaustion.  Work continues to change and challenge (and with Sally at my side and chemo on my brain, I'm not certain I'm as effective as I could be, but I can usually remember my login password so I figure I'm ahead of the game).

Chemo #5 of 6 was this last Tuesday.  The pentultimate treatment - I can see the finish line!!  My son Michael joins me at this appointment, and blesses me with ice runs and conversation to keep me occupied during the Ice Mitts of Death portion of the show.   He gets to meet my team and be a part of the planning process for the upcoming CT scan (this Friday at 6:20 am - wha?!?!?)  I meet with the PA this treatment as my MO otherwise occupied.  She's a kind and gentle soul and always curious to know how I'm feeling.

I mention that I'm keeping busy but tired, and having a hard time running.  Can't seem to go farther than a block without simply being spent.  I try to get in 2-3 miles on weekends or a nice evening, and have been walking a mile at lunch every day, plus climbing 6-8 flights of stairs twice a day at work - but it's getting harder, not easier.  (*disclaimer here:  It's hard not to go to Dark Places when shit like this happens in Cancerland).

"Well," she says, "your hemoglobin is dropping.  Do you want to see?"

What fresh hell is this?

Those little finger pokes prior to treatment tell me that I started out with a hemoglobin count of 13.5, which is good and normal and happy.  As Ken explains, hemoglobin is like the 18-wheeler of the blood highway, carrying oxygen around the body to keep you going.  Lower hemoglobin means less oxygen delivery, which explains fatigue, muscle tiredness, and my challenges in running, walking, climbing stairs, etc. (I'm counting on it causing my lack of desire to clean, cook, and forgetting to put gas in the car the other day, too...)

On this day, my hemoglobin count is 9, about 75% of what it would normally be.

Apparently Taxotere likes to gobble up hemoglobin, and this is a relatively common SE.  My NP explains that a transfusion would resolve this continued decrease and I would feel better almost instantly, and although they don't usually transfuse until levels drop below 9 I would be a good candidate if I should choose.  She also pointed out that my level will only continue to drop after this treatment, sooooo.......  As I contemplate this for a moment I look over to Mike to see him smiling, remembering when his hemoglobin dropped into the 5's ("how are you still standing up?" his doctor asked), a SE of his kidney disease.  Even he mentioned how much better he felt after a transfusion.  My NP tells me to let them know how I'm feeling next week, and if I'm continuing to struggle they can fit me in.

Off we go to the infusion room, setting ourselves up for the four-hour visit.  My cheeks pink up from the steroids, I settle in to my barca-lounger, and we debate post-chemo brunch options.  It's a typical treatment day; the nauseau starts halfway through this time, but it's manageable.  Otherwise nothing exciting, really, which is always a good thing.

Later that evening, Ken and I decide to hit the Chinese restaurant where Mike works (warm soup sounds delish on the tummy, and Sally likes the little crunchy wontons on the side).  Nibbling my fortune cookie, I read:

"The current year will bring you much happiness."

Seriously, dude, WTF?  But instead I pause, smile at my husband (who always brings me happiness...and Ben and Jerry's...) and realize that yes, even in the middle of a second dance, and nausea and pain and "what-ifs" and anxiety and exhaustion and frustration and inconvenience and huge surgeries and big decisions that I don't want to make - I am truly finding much happiness.