Is this my exit?

I'd like to think that with one radiation visit behind me, the warning sign for the exit ramp off the cancer highway is within sight.  I'm still enjoying the spoils of my trifecta cancer winnings:  chemo, surgery, radiation.  I wanted to believe that there's nothing left here for me to rehab, ingest, infuse, consume, consider, you name it.  My once purposeless follicles have emerged from their toxic unemployment.  Scars have started to fade.  Flexibility has returned.  But as a cheesy and seductive marketing campaign would suggest at 3:00 am, but wait, there's more!

Pathology.  15 lymph nodes removed.  2 were malignant.  Two too many.  My oncologist seems genuinely thrilled.  I guess I can learn to be too.  This nugget gets shoved into the folder labeled "whatever".  I refuse to lose sleep over stuff like this.  Can't do anything about pathology reports.  My oncologist and I talked about drug therapies.  This for a few years, then that.  Hormone this and that.  Bloodwork here and there.  New tests in the spring.  Just one little pill for now, I ask him?  Yes.  Just one pill for now.  All that I have been through, and the next step is one measly little daily pill.  Yes, I think my exit is up ahead.  Moving forward, however, there will be a new standard of my personal normal.  Medically, diagnostically, nutritionally, psychologically.  This is about making sure the beast stays far in my past.  Yes, I'm a little motivated to stay off that road for a long time.

In other news, the plastic surgery has been a success.  My abdominals have probably not been this flat since 1993.  This new body I find myself in feels strange at times.  My new breast is an evolving work in progress.  It is me, 100% authentic and will continue to further assume the appearance of a conventional breast by the early summer when the final touches can be applied.  I have no feeling for about two inches beneath my entire front waistline from hip to hip and on the lower half of my new breast.  This is a permanent side effect of the surgery.  This is why I have to be careful with loose fitting pants, with no sensation I may not realize they are falling off me (an unanticipated consequence that especially humors Sean).  I have some touch up liposuction I can get too, post operative 'contouring', as it's known.  In the meantime, I still have curves, I still fill out a bra, and there's still cleavage.  I'm still me.  I would have been anyway.  While recovery from this surgery was rather excruciating - and I will add in some ways worse than chemo - it was well worth it.  This is the apex of the plight of dealing with any fear, related to cancer or otherwise, I could possibly imagine:

Dear Cancer, 

First of all, you totally suck.  Now that you know this, how dare you choose me to do battle.  I mean really.  Of all people!  Did you honestly think you had a chance?  Granted, for a long time you were ubiquitously lurking, hanging, seeping and soaking through every available corner and crevice of my consciousness.  For many months I slept, ate, crapped, dreamt, thought, breathed, laughed and cried cancer.  You came between me and many people, screaming your presence whenever the opportunity reared your ugliness.  You ate up a good chunk of my life, some of which at times I believe I can't get back.  The break up was at times adversarial but you and I both know this was for the best.  Should I keep you on my Christmas card list?  Maybe I do need to address your presence now and again but there will not be a reunion any time soon.  Surely you have learned your lesson by now.  I am fully aware of the tracks on my soul you have left behind.  I am a changed person in ways I'm only starting to understand.  But that's okay.  You are out of my body now but not out of my thoughts.  And probably not out of my actions.  Because of you, I am better than before.  I am better than just whole again.  The proper perspectives of everything are now in place because of you.  Oh, and the best gift of all, by the way, is that nothing scares me anymore.  Nothing.  Maybe I need to thank you for that.

Fondly Yours, (and screw you!)

Me

I walked into the hospital last week for my radiation dry run.  They pretend to give you radiation, but insist that you lay still in your exact position because the pretend radiation may miss its mark!  Head to the right, chin up, arms up.  Zap.  Silence.  Ping.  More silence.  Lights go out then come back on.  Machines move silently up and over my head.  Six little freckle tattoos later, and I'm ready for the real thing on December 19th.  Just lay on this cold narrow table in the middle of the spacious and sterile hospital room with equipment that is reminiscent of the old set from Star Trek.  Reminders of "Breathe normally"  "Don't move" and "Just a few more minutes" as I'm laying in the now familiar shapeless light blue gown that ties in the back.  All the while telling myself, remember, chemo was way worse, all I have to do is lay here.  Let's see, three lunatic children and a dog at my chaotic home, and I am forced to lay still in this quiet room.  This is not so bad.  Ten minutes, at most.  Wondering why my nose has to itch now, of all times.  The parking attendants, techs and other assistants are all starting to look familiar.  I was pleased that the preliminary pictures and dry run went well.

Marched out of Radiology and into the cancer center's main lobby - and out the EXIT - to debut the new 1/2" hair on my head.  Garnier Medium Coconut Brown to cover the persistent grey.  Very short, but very thick and shiny.  Holding my hat in my hand.  Empowered!  Yeah hospital...Here I am!  And with my own hair!  No hat, wig, or wrap!  I'm reminded of the opening scene to the Mary Tyler Moore Show.  No, I didn't toss my hat in the air, but heck, I'm gonna make it after all.    

 

 

 

        

 

The Makings of a Masterpiece

October 25
Surgery day!  Mixed feelings.  I'd put off dealing with this aspect of the process because, frankly, thinking about a surgeon removing anything of any size, and then essentially moving a piece of my body to another area of my body and everything that goes with it is, well, scary.  There I said it.  I knew I had to do this.  The nerves involved here makes chemo seem like a walk in the park.  What I do know is, I don't like to be put under anesthesia.  I don't like people telling me what to do.  I don't like dismissing any amount of pride in any aspect of the process of hospitalization...changing into the gown - open in the front or back.  And then it's the body part in question.  I rather liked both my breasts, even in their less than full, post nursing condition, thank you very much.  And up until now, I liked my lilly white scarless skin, why even the stretch marks from the twins had faded.  I was about to collect some serious merit badges in the test of life.

Still, the clinician in me has a very strong argument:  Um, so you have to do this, because right now this is the only thing you can do to prolong your life.  Right, and so the debate ends here.  It's merely an appendage.  I can do this.  I will do this.  It's just a couple of days cooped up and a few short weeks of rest.  Again, I reiterate to myself, this is really no big deal.  Right?

And so the four of us, girls in the back of the car, rolling down Route 287 shortly after 5:00 am under a cloudless crisp sky.  Strange that the road is empty of the usual traffic backups and typical north Jersey transportation chaos.  The girls enjoying a rare ride in the early morning's temporary blackness while awake.  Sean would drop me at the hospital, let me wait, register, undress, endure the litany of personal questions and needle pokes, continue to manage my jitters while he drives the girls to preschool, then return to the hospital for my very important pre-operative pep talk and good bye smooch.  The routine has become all too familiar.

Out of the blue, Ella, while sitting in the back of the car staring out the window at the sky:
"Mommy, the stars are twinkling."
"Yes, honey."
"Mommy, those are Papa John stars!"
"Ella, what did you just say?"

The girls never met my father.  They only know him by his picture on our bookshelf.  They should have.  Although, maybe there was a secret meeting in a sort of cosmic sense.  A huge cloud of peace and calm followed him.  I'm reminded of the last few words he and I shared before his passing seven years ago.  Of cancer.  And all I'll say about that is, he was right.  I looked out the window.  A warmth - and peace and calm - filled the cabin of the car that is otherwise inexplicable.  He's here.  I'm certain.  And my three year old has just blown my mind.  Again.  There is something at work here, far bigger and greater than me.  In the darkness I let the waterworks release again, the first time in several weeks.

Ella, increasingly annoyed she has to repeat herself, "I said, these are Papa John stars!"
"Mommy," said Gianna, "Ella SAID these are Papa John stars!
"You know, they are."

                                                                       ***

The registration process, in spite of the standing room only waiting area, was rather straightforward.  My data, extensive to be sure, is already in the computer, insurance information has not changed.  There is something to be said for having all your services at the same facility.  I continue to be treated with a great amount of respect and dignity.  People going out of their way to ease my fears.  Reminding me how far I've come on this journey.  I got some strange looks as I am called to the back for the pre-op process, ahead of people who'd been waiting longer than me.

The undress and preparation period moved very quickly.  IV started, Plastic Surgeon slipped himself behind my drape to draw his roadmap and take some last measurements.  Slowly the parade of characters introduce themselves to me.  Anesthesiologist.  Surgeon.  New Doctor Who Will Help.  Head Nurse.  Other Nurses.  Blood drawn.  No, I have no allergies to medicine or anesthesia.  I have one filling.  I am not wearing contacts.  Tap a blood vessel for anesthesia and other things.  Four physicians, at least four nurses and a resident.  In the confusion, my IV slipped and fluid started to fill my hand and forearm.  And I didn't notice until my paper ID bracelet started to rip from the stress of the swelling.  That and I realize I can't close my hand.  Now that after today, I will be less several lymph nodes on the left side, I am down to one arm of usable veins and arteries on the other side, this might be a problem.  Back to the port.  I'll just have to arrange for the port to come out at a later time.  For now, it became a huge time saver.  No need to find another vein through all the extra fluid now filling my one usable arm.  I am wheeled off.  Making jokes about seaweed spa treatments and martinis.  Not bad thoughts by which to fall asleep.  And more amazed that twelve hours seems to have passed effortlessly.

In my post operative haze, I try to count the number of machines attached to me:

• Weird hose thing blowing warm air into a plastic quilt hooked to my gown
• Oxygen up my nose
• Blood pressure cuff
• Oxygen output
• Those chest and abdominal stickers
• Compression boots on both legs, that tighten every minute to prevent clots
• IV for benadryl, anti nausea, pain meds, fluids 
• 2 abdominal drains
• 2 breast drains
• Catheter

Some stuff is lost on me.  Not including the nurse who comes in on an hourly basis to check blood flow of my new breast with a tiny ultrasound device the size of a pen.  And invariably to reset a machine, empty something, or fill something.  So I find it sort of humorous, in spite of all these machines, the first words out of nearly everyone who I meet is,

"Wow!  I really love your toenail polish!"

It's important to pay attention to what really matters.

It became clear very early on that, while all this attention is great, there is no way I'm getting any kind of sleep in this place.  As early as 4:30am, begins the herd of people coming in to check on me.  The Nurse. One or Both Nursing Assistants Assigned to Me.  The Resident.  The Plastic Surgeon.  The Hot New Doctor Who Helped the Surgeon.  The Team of Six Other Medical Students Who Follow the Resident Around.  The Other Group of Medical Students Following the Hot New Doctor Around.  The Breakfast Tray Guy.  The Garbage Lady.  The Head Surgeon.  Some Random Person Who Delivers the Newspaper.  The Person Who Takes Away the Breakfast Tray.  Rieki Specialist.  The Volunteer Who Gives Communion.  The Volunteer Who Delivers Gifts.  Acu-pressure Specialist.  Ironically, one of the last visitors is the Social Worker-Type Happiness-in-the-Hospital Person (no, I really didn't catch her official title) Who Offers to Put a Do Not Disturb Sign on the Door.  (Um, where were YOU at 4:30 this morning??)  And they all ask the same questions.  I felt like making a sign to place on my door:

- Yes, whatever you are asking about, it's sore

- If it's full, it probably needs emptying

- If the machine is beeping, it's probably because I can't find or reach the call button.  Please make it stop
- Even though I've been under anesthesia for half the day, it doesn't count.  So I'm still tired
- Jello is not food, especially the sugar free kind
- No, I can't sleep here
- No, I'm not really comfortable.  You see, my hormones have been shut off, the thermostat is set to 75 degrees in this room and you are blowing hot air into a plastic quilt you insist must be over me.  And I can only have ice chips.  Yeah, I'm a little warm.
- I'm fine, considering what I've been through.  And I know you are only trying to help.  And you are all very kind, and good looking too, Dr. Hot New Doctor Who Helped.  The worst clearly is over.

The non stop attention continued through the week.  By Friday morning, Hot New Doctor Who Helped came to visit.  And out of my drug induced fatigue, I managed to have a short conversation with him.  I mentioned I was anxious to go home and sleep.

"Well, that's not my decision.  We have to leave that up to your plastic surgeon.  He is the one that did the majority of the work.  He would not be in favor of sending you home if it was risky or if it would compromise....his....(gesturing with his open hand and waving it over me) his masterpiece..."

Yes, his masterpiece.  Yes, there should be no disturbing the masterpiece.  Brilliant!  Somehow, that was refreshing to hear.  *I* am an extraordinary work of art.  In progress.  Most of which has nothing to do with surgery.  But, it may be a long time.  The progress might be slower than I'd like.  But I'm coming around.  Every day.  Every day cancer gets further and further away.  And out of the battle is emerging a different, better, stronger person.  Doesn't mean I won't love a long nap, quiet, learning to address my needs as well as I address others' needs, and maybe some more reiki and acupressure at the hospital when I go back for radiation in the middle of December.  

I came home late Friday night.  In the darkness of a crisp fall evening.  And even though a rare fall nor'easter was headed our way, I noticed those stars were still twinkling.         

       

  

Post Chemo Reflections and Updates

September 29 - Adieu to you!
Final appointment with my medical oncologist.  Well for at least a few months.  Discussed the usual, fortunately no horrid side effects from final chemo treatment #6 three weeks prior.  #6 in a way was easier than #5, less fatiguing with less intestinal upset.  My eyes felt burned out and dry from the Taxotere, a rarer but not undocumented side effect, that gradually are starting to feel more normal.  Doctor conducted a final exam, punctuated with a flu shot, I believe only the second one I've ever received.  He advised me, like I didn't know, that I am "blessed".  And that is completely true.  I'm blessed to have made it this far with very little to complain about physically.  Blessed that my upbeat attitude has, for the most part, remained intact.  Blessed that I have had a "very good" response to the chemo.  My mass is shrunken to a bit less than half its original size.  It is difficult to measure as it has retreated deep inside my chest, like it's searching for safety and hiding away from any additional chemical combat.  Blessed that it will realize a rude awakening on October 25th!

This final appointment was like an amicable breakup.  Our dates together were nice, we got to know one another well, had some laughs along the way, but it's time to move on.  And with a handshake and a genuine wish for continued health, I left.  I do need to return after radiation is complete, but in a way, strangely saddened that I was leaving his office for the last time for a long while.  Of course I am thrilled to be over this hurdle; but at the same time this facility, filled with such caring individuals represents warmth, hope and comfort, and after a while, familiarity.  Strangely, it has come to feel like a second home.  That I was leaving for a while represents an amazing achievement I am only beginning to fully comprehend, but also serves as a gentle reminder of the new set of unknowns that are lurking ever closer in my immediate future.

October 5 - A few more angels here on Earth
Anyone who knows me knows that I have a hard time asking for help.  I finally met my match when I found out about a small organization that does free housecleaning for anyone of any age and in any stage of treatment of any type of cancer.  I simply could not resist.   www.canswerlink.org.  Just the sweetest women I've been honored to meet.  Green cleaning products, they dedicate an hour of their time to clean where ever needs it most in your home, and out the door they go.  Not only is it next to impossible for me to ask for help, especially with something that I perceive to be my job, but they demand nothing in return.  I couldn't even brew them some coffee.  Message?  Asking for help has its rewards.  I should try it more often!  They're coming back again next month and every month I'm still in treatment.

October 7 - Radiation, okay so it's not Cancun, but...
Yet another step in this process, to follow surgery.  My radiation will be right downstairs in the hospital from where I had chemotherapy.  Was introduced to my physician, who had already reviewed my file and had a treatment plan all laid out for me.  28 radiation treatments, Monday through Friday, roughly 6 weeks.  Some time was already built in for holidays, in addition to six weeks' recovery from surgery.  The amount of time in the machine is measured in seconds.  I was given a tour of the facility.  Coffees and teas in the waiting area, gown up, lay in the machine a minute or two, then out.  I need to be wary of burning, not unlike a sunburn, and mild fatigue, not unlike spending the day outside.  That's it?  Cakewalk compared to chemo.  *I* can certainly handle a little burn.  I was given a 'welcome' packet (even though it seems like this hospital has become my second home, and people say hello like you'd say hello to your neighbor) and invited to take part in holistic services in addition to the radiation...reiki, reflexology, meditation, yoga, painting.  This treatment is exceptional.  Time to embrace it.  The worst is over.  I made a promise to myself I'd try some of these additional services while there, which will be daily anyway.  

And now....the waiting begins.  A watched follicular unit never grows (so it seems)....

Okay, so dramatics aside, time for a little selfish vanity.  Allow me a mini-rant.  Basically, I want my hair back.  Pure and simple.  Chemo's over, I understand that hair must be sacrificed in order for the more important work of these dreadful chemicals to be done, I get it.  They did their job!  I am still so mad that hair matters, it really does, and that I still don't have any.  I want my look to reflect how I feel.  I am so over the exterior 'cancer' persona.  I lost my hair nearly five months ago.  First of all, my head is freezing.  I have never experienced this sensation before!  And I still hate to wear a hat.  The synthetic wig is nice, most are fooled that it's not my hair, but it's not fun to wear anymore and its novelty has officially worn off.  Real hair wigs just creep me out and they must be styled just like your own hair.  I want MY hair.  I don't care if it's wiry and gray.  Or stringy.  Or patchy.  I just want hair.  I dream of hair, at least once per week.  I dream I have my own hair.  I once dreamed I had Gianna's hair.  Then I dreamed I looked like the Grumpy Old Troll (for those of you out of the preschool loop, a character on Dora the Explorer).  Then once, I dreamed I had Kobe's chocolate with salt fur on top of my head.  And the weird thing is, I remember being okay with all of these - I had grown something from the top of my head and in my dream, I am at peace.  I wake up in the morning sometimes almost surprised I still don't have hair.  I over-analyze hair on people on TV.  Like, "your hair makes you look like...

• ...George Clinton!"
• ...like you're trying to be 25...and you still look at least 60!"
• ...that's not hair!  It's a rug...a smelly stained rug that needs to be put out of its misery!"
• ...a turnip!"

And in reality, I've grown insanely jealous of anyone - ANYONE - with any semblance of hair.  I listen as my husband waxes poetic - jokingly of course - about the wiry grays intertwined with his strawberry goatee hairs and that I am personally responsible for their rapid multiplication.  Oh really.  I am impatient.

October 12.  The countdown is on!
So in spite of my hair obsession, I went to the local American Cancer Society chapter office and took advantage of a head cover giveaway.  And what do I get?  A really short wig.  I figure, I need to prepare for short hair, so I grab a short pixie cut wig, inexplicably named the "Annie".  Between the long one, Annie and the hair halo, I will not need Halloween costumes for many years to come.

After deciding that Annie should be employed as my new temporary lid, we walked down the hall of the ACS and perused the donated assortment of various headwraps and hats.  A woman then came in with her husband.  She had just started chemo and her hair had just started falling out.  She had to stop treatment because she could not handle the side effects.  It was her first visit to the ACS and was clearly still trying to come to grips with her diagnosis.  With assistance from an ACS volunteer, she selected a sleep cap and said to her husband, "so I can wear this in bed so you don't have to wake up and be freaked out by my white shiny head."  He replied to her, "I really don't care what's on your head.  Just be there...next to me."

And with that, I'm reminded how far I've come.  I can wait a bit longer.  I might act like a Grumpy Old Troll from time to time.  It's just hair.  I'll be thrilled by what I see in the mirror...in a very short time.

Next was a follow up with my plastic surgeon, who has the task of putting my body back together following the surgical tumor ambush on October 25th.  He advised me that he will be able to retain far more skin than I thought.  CT scan results show good blood supply.  Hoping that the high anticipation of the event itself will render it anti-climatic.  Let's get this done already.  I really am quite impatient at times.

October 15
That day at the shore finally happened.  So I wasn't in the swimsuit like I envisioned.  And no, it wasn't for a week in that shore house I imagined, just a half day.  Bundled in a few layers of fleece for protection from the brisk wind.  I sat with Sean on the empty shore and watched the waves and stared back at the seagulls, who to Gianna's delight approached very closely, wrongly assuming we had food.  I sat with Sean and watched the girls draw shapes in the sand with sticks they found, build a 'castle' with piles of damp sand, and decorate their creations with shells.  They were so happy chasing each other around in a game of relay-style Tag they'd invented.  I thought about that vision of myself I'd had of walking on the beach with all my hair back in the swimsuit with the goods on top looking as they should.  No, not quite, but everything that mattered to me was right here at the beach.  My husband.  My girls, euphorically and blissfully happy by simply being able to run about safely in their bare feet and enjoying their surroundings.  The peace of the scene's honesty and the emptiness of the shore.  It felt like one of those capstone moments that will stick with me.  Frozen in time.  I need to make some more of these little moments happen.  A delicious short escape from the everyday.

October 18 - ACS Walk
Just another reminder that I have been indoctrinated into a cult of strength, support and hope.  Like a forced pledging into a huge sorority.  A least a few thousand survivors. supporters, aunts, uncles, dads, children, friends, pets.  I, with my friend Rebecca who survived leukemia as a teenager, marched up to the Survivor's table to collect our gear to proudly wear.  Bright pink tee shirt and baseball brimmed cap that covered my head but still made my baldness underneath appear obvious and that's okay.  Random, unsolicited sentiments of "god bless", "best of luck", and "congratulations".  A team of junior-high cheerleaders chanted my name at the midway point to the delight of my girls who shouted along with them.  The celebration atmosphere was uplifting.  A perfect way to end the weekend.  Just nine days away until I can consider myself closer to being cancer free.

             

The Outer and Inner Blingification of Me

August 31
First time meeting with the plastic surgeon who will do my reconstruction.  The appointment almost didn't happen thanks to the local flooding from Hurricane Irene and all the power outages in Morristown.  The office manager called in the morning to say there was no power in the office building, but we could still be seen.  As we approached the office building the power went back on after a three hour outage.  A sign from above?

This highly respected surgeon is the second coming of Doogie Houser.  I secretly pictured him fitting nicely in one of the girls' car seats.  He probably gets carded at the liquor store and at the movies.  Would he need a step ladder to reach me on the operating table?  But Ivy League educated and highly regarded.  With a bright white smile and calm demeanor, he took nearly two hours with us to explain the various reconstructive options.  Explained how surgical breast reconstruction came to be.  How mastectomies were performed 25 years ago compared to today.  And why one option would not be optimal because of my post-op plans for radiation, and why yet another option is not suitable because I do not have sufficient tissue to transfer (and yeah, that is the first time a doctor ever told me I do NOT have "sufficient tissue in this area" or any area, for that matter, to make any sort of transfer - ha ha).

Then for my first nudie photos while standing in front of a strange blue screen.  No, these will not be posted anywhere so relax people!  And even if they were, none of them show my head to maintain my privacy.  No coaching from the side, drunken poses, blowing fans or stilettos needed for my first shoot.  And you also won't get to see my rolled eyeballs, stuck-out tongue or money shots with my come-hither pout.  Confident that the after shots will be as good - maybe better with some scarring - as the before shots.

A few pre-op tests will be needed before the surgery, to be scheduled after my last chemo hump subsides.  Major surgery - two separate surgeries on the same day really - to last about 7-8 hours.  About 5 days' hospitalization.  Nursing care after I'm home.  I know it will be a tough haul.  But strangely, I'm looking forward to this new challenge that has already rendered a new and better me.  And in a bit more than a month, a cancer-free me too.

September 8
Last chemo day.  Amazing.  I've been thinking about this day for months!  I would have thought I'd be I-Just-Won-the-Megaball-Lottery happy.  I am, but it's more complicated than that.  I am realizing this experience is not really ending today.  There is peace in this truth and it's a little scary too.  The gravity of my experience thus far is starting to weigh heavily.  I am such a different person after this chapter.  I don't recognize the old me or the new one.  That is not necessarily bad.  Forever I will now note times in my life by "before cancer" and "after cancer".  What I have put my body and my mind through!  Staggeringly frightening and miraculous all at once.

Still, not including a little extra napping the last two weeks, the level of my real physical discomfort each round can be measured in minutes for the first four rounds, and up to a few hours after round 5 and really nothing else.  For this I am truly blessed and fortunate.  Doctor tells me my treatment protocol is "probably top 5 toughest" cancer treatments anyone can get.  I am inspired and exhausted all at once.  Strength is tiring!  However I have spent far more energy perhaps tuning out my physical symptoms and dismissing them completely in order to more existentially consider this experience and how it has left me.  I guess I have officially entered a phase of self re-discovery.  What will I find?  What do I want to find?  What have I lost?  I simply don't have the words to explain this.  Maybe someday.  Back to the day-to-day, for now.

The nurses and all the staff at the Simon Center are special people who made my last day of chemo a wonderful experience.  We got a couple of fun ideas to celebrate this milestone.  (Best one:  Amex Gold...the possibilities are literally limitless!)  Sean and I played cards, again, and after four rough hands the husband pulled out the victory.  But he was heavily handicapped!  Come on, after five hours, two failed port flushes and six drugs through a shoddy port that still wouldn't give a proper blood sample?  And why do I always beat him at home when I can have a few fun cocktails I can actually sip?

I've been so good these last few months, I can think of nothing but really bad food.  Especially in light of my embarrassing public loss at canasta.  Deep dish Sicilian style pizza.  Dinosaur BBQ.  Milk chocolate.  Really heavy saucy spicy Indian food with lots of naan.  Taylor ham, egg and cheese on an sesame bagel.  Macaroni and cheese.  Almond pastry.  Sense a trend?  Carbs and sugar.

When the needle came out for the last time, I was ambushed by the Operation Bling Foundation (www.operationblingfoundation.org) and asked to choose a piece of jewelry to celebrate the completion of my chemo.  A pair of delicate sterling silver amethyst gemstone antique-inspired earrings became mine to wear home.  After a few hugs and waves out the door, I managed to hold it together until I got on the elevator, and read the message included with my earrings:

What Cancer Cannot Do...
It cannot invade the soul
It cannot suppress memories
It cannot kill true friendships
It cannot destroy peace
It cannot conquer the spirit
It cannot shatter hope
It cannot silence courage
It cannot cripple love
It cannot corrode faith
-author unknown

One rather impressive pair of earrings.  Couldn't agree more.  Now onto the next chapter!  Or at least, a bowl or two of really amazing paneer saagwala.






          

This just in: I'm gonna be cool again!

August 3 - Chemogirl walks out on 'God'

I've been able to determine one thing about myself.  I hate to wait.  Actually, under most circumstances, I will not wait.  For anything or anyone I feel I shouldn't have to wait for.  Expected or necessary waiting is fine.  I had a post-op appointment with the surgeon who put in my first - and second - port.  This doctor came highly regarded for what he does in the community and presumably in surgery.  He is, as I learned after the fact, equally notorious for ignoring the clock and thereby disregarding anyone with any kind of additional obligations outside his realm.  He is never, ever on time.  Had me and the nurses and the anesthesiologist waiting a full hour at the OR for my first surgery, the second surgery, gee only 45 minutes late.  Very unapologetically.  Sean calls it a 'God' Complex.  I can only tell myself this so many times before I realize that I have been sitting in 'God''s waiting room for 3 - YES THREE - hours.  Gee, I thought, I only waited two plus hours for the last two appointments with this doctor.  My last appointment with him lasted long enough for 'God' to say, "hello - I like your wig.  Your scar looks fine.  Make sure to apply Neosporin three times a day.  Good bye."  It was now 5:15 pm and my appointment was at 2:15 pm.  After taking a bathroom break, I return to realize the nurse took a woman whose appointment was 3:00 pm before taking me.  Being that smoke spewing from my ears does not accessorize well with my lavender embroidered headwrap, I did something I have never done before.  An angry, young bald woman - who spoke openly with the others in the waiting area about her Stage 3 cancer and openly about the three young children waiting on her - is not a sight too many wish to behold.  I approached the sliding glass door where this unlucky nurse waited on the other side.

"My appointment was at 2:15, you took that other woman whose appointment was at 3.  And how do I know this?  Because she and I became the best of friends in the 2 1/2 hours we've been waiting around and she told me her appointment was at 3 - and you took her first."  The nurse looked as though she was fighting back tears.  "Now I have an hour's commute in rush hour to pick up my three year-old twins.  I don't have this kind of time."  And I walked out.  "We'll reschedule you..." she calls out to me as I turn to leave.  "Please, don't bother waiting around too long for me to call you back," stirring up some muffled chuckles from the other four fools who opted to wait.  One of them followed me out the door.  Well, I thought...I just walked out on 'God'.  I can't go back now.  I am fortunate to live in a relatively affluent area with a plethora of highly skilled doctors of many specialties within a short drive's distance who respect the time and obligations of their patients.  I deserve better.  At least I can't complain I went gray waiting.  Time for a new doctor who can help me.  There are simply some matters that are not worth my anger.  Anger is energy that could be put to better use.  Anger is probably also veiled and misdirected sadness.  I am also gently reminded from above that it's time to reconnect with the Real One sometime very very soon...

August 18 - Tummy Tucks and Tattoos?

First consult with a new surgeon.  Again, highly regarded as the first, but verified as such by three independent people, one of whom was a former patient in his large group.  Walked into an empty waiting room.  I am already in a splendid mood.  I am strangely disappointed that I was not even given the opportunity to peruse the stack of magazines to busy myself with when I am called.  They were good magazines too!  OK!, Life and Style and People.

In less than 20 minutes since my arrival to the office, the new doctor confirmed what I suspected all along.  Yes, I must have a mastectomy.  Yes, the entire left breast.  No, there are no options.  No, nothing can be spared aside for a skin-pocket where reconstruction can fill the inside space.  This is aggressive and necessary treatment.  This is the only treatment.  This, along with vigilant future diagnostics, will save your life.

I am finally forced, for the first time in several weeks, to remove myself from my practical reality day-to-day living philosophy and take a step back to review the larger picture.  I am reminded, albeit graciously and quite respectfully by this thoughtful and stoic physician, how serious my health became and still is.  I have made terrific progress during chemotherapy; with two remaining treatments my mass is probably down to half its original size.  We must remove some lymph nodes.  There are really no questions to be asked here.  This is a relief in a way because there are no decisions here for me to make.

In the stillness of this small examination room, Sean and I stuck in pensive silence staring at one another, I still struggle to manage the crashing noise inside my head of a dashed hope.  For a long moment, it is deafening.  I can think of nothing to say.  I am amazed I can hold together my emotions on the outside.  I dreamed over and over that I could quickly and efficiently evict the squatter inside me but keep the residence intact.  I saw myself walking along a stretch of Jersey shoreline in a swimsuit, confidently, and I have my long, curly, strawberry blonde locks back dancing in the ocean breeze, and then realizing this walk probably will not happen until next summer.  Wishing for something that should not - and cannot - happen is no longer a practical option.  It probably never was.  I will be forever altered.  But as I'm sitting here, I already am altered.  I sense my outlook evolving as the physician goes over the many reconstruction options available to me.  I struggle to think up some intelligent sounding questions.  Or to at least give him the impression that I'm really listening objectively.  I'm scribbling nonsensical words and phrases in a notebook because that looks like the right thing to do.  But I'm thinking:  I can be rebuilt.  I have already been rebuilt in a way.  This is one more step on the road to a new me.  I have already taken so many.  I have seemingly lived so many lives and experiences in just a few short months that for better or worse have felt like years.  Just a few more steps.  Perhaps a lot more steps.  I had myself convinced that my hair loss would be most devastating aspect of this experience.  Perhaps once again I was wrong.  No, I was absolutely wrong.  I know this now.  This is a thick heap of sick tissue - most of it healthy too -  that must go away forever and never return.  It is as simple as that, right?  Is this still really no big deal?  My very own hair's going to come back.  My body WILL be reclaimed as my own.  The day until this happens grows ever closer.  I will be better than I was before.  On the inside, and perhaps, the outside too.  Wait, I already am.

I leave this office less than one hour after my arrival with a tentative surgery date - sometime during the week of October 9.  I have the name of a respected plastic surgeon who will work with him to reconstruct the new me.  I go home and make the call to the plastic surgeon who will see me at the end of the month.  I am promised an e-mail booklet outlining all my reconstructive options and urged to read it and write down questions prior to my appointment.  As expected, an informative patient consultative booklet was delivered to me a handful of hours later.

So this new body of mine might be even better than the original.  The plastic surgeon will first remove my port and clean up what is now a 2 1/2" scar near my collarbone.  Reconstruction can include tissue transfer from behind the shoulder, the other breast, tissue from one's rear end, a combination of places including an implant, or in many cases, from excess lower abdominal tissue.  Yes, read it folks - I can get a tummy tuck in addition to my reconstruction.  Ok, let's remember friends:  Three. Year. Old. Twins....Carried them to nearly 37 weeks.   I was so large Jefferson Township nearly issued me my own zip code.  Think I have enough extra down there to fashion a fabulous new sexy orb?  You betcha!  And I thought the answer was in pilates and yoga!

I read on with increased interest.  Mastectomy and reconstruction can happen in one very long surgical procedure.  Recovery is usually 4-6 weeks.  A few months following, one can also return on an out- patient basis for a reconstruction and/or tattoo of a nipple.  Again using a small piece of tissue from somewhere else.  Now I ask you - who would have ever thought one could get not only a tummy tuck AND a tattoo picked up by insurance under the diagnosis of treatment for breast cancer?


August 19th - Chemo Number 5

I am filled with more hope for the future.  It's time to start making plans!  I can - and want to - see the light at the end of this long winding and sometimes frightening tunnel.  In the morning I'm back in the groove on the elliptical.  That zone.  Everything's working.  After some eggs, back to the hospital for more chemo.

As luck would have it, stupid port #2 still refuses to give up a blood sample.  But after a one-hour flush, at least the chemo goes in.  I let Sean beat me in two hands of canasta.  I texted a friend to tell her I want to join her for the United Way Bridge Walk in Brooklyn in early October.  The Diet Coke I sip still tastes like it should.  Rather than fight my port, Rachel my nurse just grabs a blood sample from my arm and we call it a long day.  Talked with the doctor about radiation, which would begin after surgery.  I ask about the side effects.  "I don't expect it to be a big deal for you," he says to me.  "You barely complained about your chemo, and it would only be about four to five weeks.  After that, just pills."

The end of the darkness might be here!  I can smell my success.  I still visualize myself on the beach with an enviable rack and all my kinky hair back.  But now I can also see myself cancer free.

        

                  

Tiny Victories

August 10

The girls - Team Frickinfrack - are officially 50% potty trained.  Relief for the mama, and relief, well partial, to the wallet.  Ella is now talking about getting earrings.  We went from Dora pull-ups to earrings in the span of three days......<sigh>.  Gianna will come around.  Eventually.  Very headstrong, stubborn little girl.  Who I think may be choosing to stay in pull ups simply to assert her own choice.  Hm.  I don't know anyone like that!

August 11

Back to working out.  I felt in a bit of a rut the last three weeks.  Too hot.  Too this and too that.  Too easy to feel sorry for myself.  Stupid!  Back to 45 minute power walks.  With the amazing company of me, myself and I.  Walking allows me to get away from all that's negative and embrace everything that is simple and too easily forgotten or overlooked.  The shape of the clouds.  The sunrise.  The gorgeous breeze coming off the lake.  People and animal watching....most entertaining.  Saying "good morning" to the host of regulars on the path.  I can almost smell fall.  What a great week of weather it has been!  Actually, it has been an all-around great week.

August 12

Doctor's office called following bloodwork I had on Wednesday.  I can dump one of my prescriptions as I no longer need it.  See, when you have cancer and you have to remind yourself of this because physically you feel perfectly normal, and you HATE having to be dependent on medications, this is not a tiny victory but a huge one!

Then, the genetic counselor called....my genetic mutation testing came back negative.  I am on a streak!!!  Keep it coming.....    

Midpoint Musings

July 12 - The great reveal

I have had it with this heat wave.  I suppose you can take the girl out of 200-inches-of-snow-a-year-Oswego-New-York but apparently Oswego New York doesn't leave the girl.  I love hospital ORs that keep their thermostats the temperature of meat lockers.  I love going to the freezer section in Shop Rite and opening the door with no intention of buying anything and just standing there to cool off, or course looking like I'm seriously pondering buying the organic frozen berries versus the cheaper alternative.  This is due to the chemo continuing to hammer away at what few hormones are left.  I guess this is what hotflashes are all about.  I am a little sorry I know this too well, although I am mindful that both the hotflashes and the weather are all temporary.  The lesson?  Synthetic hair, while it will never curl in humidity, is the hottest stupid thing to wear on your head in the middle of oppressive heat while undergoing chemo that brings on hotflashes.  The scary thing, the wig is about 1/8 the amount of hair I used to have on my head.  Sure, my wig doesn't frizz in the high humidity, and it really does look great with minimal effort but is it really sexier to have perfectly straight shiny hair and the head sweat with no where else to go than right down my face and neck taking every hint of makeup with it?.....lovely.

So in the middle of the early evening on this oppressively hot July afternoon, heat index in the triple digits, I had enough.  I decided to extinguish a double three year-old massive fatigued-induced meltdown that had worn away my last few nerves in the middle of my kitchen by simply and calmly looking at both my girls quite sternly and removing my scarf revealing nothing but milky white scalp underneath.  With no warning.  Just like that.  A great way to silence nonsensical whining very quickly.  Understanding this tactic will only work once.  I had gone over a month concealing my baldness in front of them, but enough was enough.  I removed my scarf and waited for what seemed an eternity for a reaction from them.  It was so deafeningly silent in the house I could almost hear the drips of sweat falling from the tip of my nose and hitting the floor.  They both stopped, stunned, and just stared at me.  A luxurious ten seconds of silence....what the heck did these girls think happened to my hair all this time?

The quiet was snapped by Ella's trademark hearty goofball cackle.  Just like her father's.  Directed right at me.  Gianna started to giggle too.  What a relief.  I can hold off a bit longer from starting that savings account for their future therapy sessions that someday I will probably try to blame myself for them needing.  I bent down, lifted up their shirts and proceeded to tickle their bare bellies with my perfectly proportioned blonde peach fuzz sphere.  "Hey! I'm still Mommy!  My peachy head was so hot it had to come out and say hi!"

"Mommy, your head is naked!!" Ella screeched with glee.
"Well Ella, aren't we all naked under our clothes and hair?"  Immediately receiving back that wheels-are-turning, deer-in-headlights glare back from my daughter.  Oops, I forgot.  Barely three years old.
"Mommy, your hair broke."  Gianna stated a bit more flatly, a bit more pensive.
"Well, yes it did honey.  But it's coming back soon."
"Yeah, it's going to be GREEN!" Ella screamed with delight.
"Well that would be fun!" - thinking for a minute that I may not mind hair of any color, provided the weather would cool down first.
"Mommy, where is your hair?"  Ella asked.
"Ella, it's in the other room!"  Gianna, remembering the conversation we had a few weeks back.

And with that, the two of them dashed down the hall to my bedroom to make sure my hair was on its stand on my dresser.  Putting it all together, 3 year-old style.  We got out some fun clips and some combs and sat on the bed and they brushed and styled my hair from its stand.  Dressed it up with some of their bows and hats.  Way more fun - and much more hair to have fun with - than any Barbie.  Happy that my girls are far more resilient than I imagined.  Perhaps a real source of my strength.

July 18 - Halfway ALREADY?  ONLY halfway?

Here we are at the midpoint of my chemo.  I continue to physically feel rather close to normal.  Everything I was warned of really didn't happen.  Well not yet.  No nausea, no real fatigue, yes my hair is gone of course, but my nails don't show the telltale signs of chemotherapy treatment as I was warned...well not yet.  No weight gain.  Actually a bit of loss.  No mouth sores.  The famous metallic taste lasts only 2 days or so and it's tolerable.  My eyes are in a constant state of dryness and redness and swelling and burning that no cover up could fully correct.  This is by far the worst side effect so far.  But then again my allergies aren't helping either.  They are sticky and red.  Chunks of my eyelashes are missing.  I never had terrific eyelashes in the first place.  Short, stubby and sparse.  The best correction?  Chilled cucumber slices on my eyes and a few extra in an iced glass of Hendricks and tonic.  I used to think that was such an old man's drink.  On the other hand, I kind of look like one on my bad days.  And my nose runs, indiscriminately and without warning.  I never thought I'd miss the hair in my nose that's no longer there.  The lesson?  Don't dismiss nose hair until after you lose it.  It really is quite functional.  Stay armed with tissues at all times!  I would make a great spokesmodel for Kleenex.

My shoulder and neck and upper back continue to give me discomfort.  Please please please, let this surgery on Wednesday to replace my clotted port correct this stiffness and pain that likes to travel up my neck and make already broken sleep even more challenging.  I have never looked forward to - as well as dreaded - surgery.  I hate relying on pills for pain relief or to sleep.  "Don't be a martyr," my husband says to me.  He can't tell me to not be stubborn, however...

Less than four years ago, I would clutch my abdomen filled with two active healthy babies - as my middle grew larger and larger and I happily became more and more physically immobile and I reveled in the miracle that was happening inside me.  Quite similarly, I regularly run my fingertips with great anticipation across my breast with some amazement that what is underneath is getting smaller and softer, and again, rather intrigued by the changes of the size and shape inside of me.  Still miraculous.  But conflicted.  What was a bit of an embarrassment in my pre-teen years became something to be rather proud of - both round and fabulous C/D cups in college and long after.  It was once an object of sexual desire.  It fed three newborns.  Now it's just a puckered and scarred science experiment.  That I will only have for a few more short months.  I never considered that I would - and must, to be frank - outlive one of my body parts.  I look in the mirror and wonder who that person is sometimes.  No hair, red swollen sticky crusty eyes.  a formidable and protruding don't-mess-with-me scar on my opposite side of my chest that remains visible with many tops I wear.  I look like I belong in a Metallica video.  Should I look away or look a bit closer?  Pain I am unaccustomed to feeling and worse yet, sometimes difficult to locate.  Wait, it's not really in the mirror.  How is it that I can be healthy and thriving and feel so lost at some times?  I'm learning now, this is a journey of existential proportions.  There was no pamphlet in my hospital folder about that.

And now for something completely different...

Next week I may also find out the results of genetic testing I had done about three weeks ago.  This link proved to be quite informative for me:

http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

And now for your bonus public service announcement, folks.  For instance, ladies (and guys), please know that family history of breast cancer matters on BOTH your father's and mother's side.  I have no known history of breast cancer on my mother's side but there is breast cancer on my father's side.  And, women AS WELL AS MEN can carry the BRCA 1 or 2 gene mutation and may never be diagnosed with breast cancer.  Men, however, have a greater risk for early onset and/or aggressive types of prostate cancers, which my father had.  While the odds of me being a carrier are still quite low, a positive test result means my likelihood of cancer recurrence of either breast or ovarian cancer skyrockets.  And it will matter regarding long term treatment planning.  I'm working hard to remind myself that, the nervous breakdown is over (isn't it?), and either result at this point is nothing but beneficial for me and to many in my family.  So:  It's vitally important to know your family's health history.  Who had what and at what age.  Start asking.  Know that men will find some value in understanding their family's breast cancer history for of course your female relatives but also for YOURSELF.  Just don't forget yourself.  The other lesson?  I don't have excess energy to worry about things over which I have no control.  I didn't before and I certainly don't now.  So whatever my personal test results are, it will be OKAY.  It will be BETTER than not knowing.

July 27 - Port Number Two

Let's just say, glad it's done.  Um, for anyone who has ever woke up in the middle of surgery - and realized they are out of anesthesia - and they could have used more - yeah...not cool.  Surgery went twice as long as it was supposed to.  Rerouted port twice.  But it's in, I still have some minor pain but it's constant, dull, predictable, and medicate-able.  Tylenol happiness.  Hopefully the adhesions that had formed around the first port was the source of the stingy pinchy pain that was driving me crazy.  Three more treatments.  Please, let me use this port without incident or excess pain for just three more times.  Is that so much to ask?  Like the warrior that I am, I did not want the girls to miss their dance class later this evening, so still in a morphine-percocet haze, Sean drove us over directly from the hospital and I watched for an hour of tap, ballet, creative movement, and gymnastics.  And giggles and fun in their cute blue dance dresses.  The Assistant Director Jennifer was there and I must have looked like, well I just came out of surgery with all my fresh bandages, tape, and no hair but just my hat.  Immediately concerned.  Just a mess.  I probably should have just gone home.  Those girls keep me going and keep me strong.  She came right out and asked me if everything was okay.  I explained my situation.  I still don't like to say it!  She offered the girls a chance for a bonus class if I need a break.  I broke into tears of happiness and exhaustion from withstanding a little too much pain for one day.  It's actually been several weeks since I've done that.  People out there really really care.  But extra bonus, at least my tear ducts are not blocked!  How refreshed my eyes felt after this good cry with real tears.  Lesson?  Systane is great, but real tears are way better.  Thanks Jennifer!

July 28 - WE ARE OFFICIALLY MORE THAN HALF DONE WITH CHEMO!  That would be 66% complete!

You know you must have been feeling slightly down and out when you return home from chemo feeling better than before you went.  Okay, for one thing, again, this *Chemogirl* is the star here.  We are ALL the most important people in the room.  And there are many of us.  Notwithstanding, *I* can do no wrong.  *I* can't be late, it's never *my* fault, everyone works furiously to ensure *my* comfort.  What can possibly be wrong with that?  Everyone else casts their petty worries aside and saves it for private conversation behind the nurses' station or for after their shift ends.  And for a minimal copayment, insurance picks up the rest.  Best deal in town.  I am still waiting for my hospital provided complementary mani-pedi.  Or how about a frozen margarita instead of the required ice pop to prevent the mouth sores during administration of one of the chemo drugs?  They must be saving that for my graduation present!

Doctor continues to be impressed with my progress and my lack of serious side effects.  Yes, my squatter-friend is still there but it's shriveling up and it's softer and mushier.  Understanding its eviction is fully underway, it tries to escape the grasp of my and my doctor's fingertips, moves around, what was at one time the size and texture of a hard boiled egg is now maybe more like a loose mound of the egg that now has been over-scrambled.  I visualize tiny chemo-pellets jabbing away at it.  It is still there, but different.  Not the soft suppleness of my pre-cancerous breast, but closer.  What was once easily handled and measurable is not so easy anymore.  Remember, these observations were made before today's fourth infusion.  Just halfway and the changes are staggering.  It almost makes me look forward to receiving subsequent infusions.  So between the good news, the forced relaxation complete with iPod, today featuring Adele, The National, Band of Horses, trashy gossip magazines, a cute guy nurse, and getting cleaned up and my saturated bandages from yesterday changed, left a more refreshed relaxed and most importantly, grateful person.

July 29 - A first!  But hopefully not an only...

Port feels better.  It is starting to feel like it is a part of me...again.  I feel better.  I don't feel like that Metallica video walk-on today.  Dragged myself and Ed out for a power walk with me around my favorite lake.  First time ever he wanted to come with me.  Great conversations that I'm hoping will become more frequent.  I am again reminded of the brilliant, thoughtful, sensitive, funny and insightful child I have raised into a man-in-training.  Many years on my own as his only active caring parent.  Sometimes I forget about this feat!  I am so proud of him.  I love him.  Sometimes I am scared.  But I don't show it.  And I don't tell him enough.  I learned this with the help of a social worker from the hospital.  I'm going to change this.  One final note for now:  Don't let precious moments like these slip away.  Say what you know you need to say.  They'll thank you for it.  The carb laden bagel and cream cheese break afterward didn't hurt either...I earned it, right?

Many steps forward, one big step back...

Felt so good these last few weeks.  Many days I have not thought about my cancer.  Maybe that's part of it.  Doing everything I've always done, just throwing a few extra doctors appointments into the mix.  Being aware of my body and its changes, not ignoring signs but not focusing too much on them either.  Am I not thinking enough about this?  Even getting used to wearing the wig.....why, I wonder, I have had hair on my head - thick, curly, long hair for most of my life - it falls out and I must try to get used to wearing new hair?  It is seemingly more and more like my own and not fake.  I'm starting to like it.  But strangely, I enjoy being able to remove it and go bald (mostly for just Sean and the Kobe Dog, who seems to have taken a liking to sniffing the top of my bare head) or top it with one of my soft pima cotton caps not unlike you'd put on a newborn.

The other day Gianna saw a picture of me and said,
"This is you with hair, Mommy."
"Yes, Gianna, " I said.
"You are wearing glasses in the picture too Mommy.  Hair and Glasses."
"Yes, Gianna."
"It's two Mommies"
"No, Gianna.  I'm still your ONE Mommy"
"Where is your hair, Mommy?"
"In the other room, Gianna, and my glasses are in my purse," I replied.
"Your hair is not on your head."
"That's right."
She looked twice back at the picture, back at me, and proceeded to finish her peanut butter sandwich.
And that's apparently about as far as I can go with a three year old.

Meanwhile, Ella told me she likes to "be like Mommy" .. the best thing I've heard in a while...

It's a look.  She likes to parade around the house in any of my shoes and giggle and mock me out.  "Simmer down!  I can only do one thing at a time!"

After I took Ella's picture, Gianna eventually came around and added an accessory to my tresses for a more regal look....watch out Kate Middleton!

I guess the lesson here is to keep it fun and light.  I still really don't know whether they understand that I don't have MY hair.  Perhaps they do.  My goal is to affirm to them that, it really doesn't matter.  I'm still me, I'm still their fun mom.  I just get to take off my hair whenever I want.  The bald will remain covered around them I think, for now.  I still try to grab the ponytail in the back of my head that's no longer there.  I still inadvertently grab clips and hairbands forgetting there's nothing to tie back.  But it's better.  Really better.  And a tiny bit of peachy baby-blonde regrowth, that promptly falls out every few days.  A visual reminder that my rebirth is fully underway.

July 3 - Don't ignore too much!
What I believe to be my first trip ever to a hospital ER.  I've spent far too long ignoring suspicious symptoms and trying to self diagnose.  Achy traveling pain running all around the site of my port, traveling up my neck, shoulder, around my shoulder, upper back, unable to lift my arm.  Excruciating! Called the on-call oncologist who reminded me that blood clots are always a possibility.  Am I swollen?  Am I short of breath?  Do I have a fever or other signs of infection?  Gianna had strep two weeks prior.  These are not the type of fireworks I had in mind for this weekend.

True to form, a cancer patient registering at an ER for possible complications from treatment are handled like celebrity VIPs at a club.  Open up the velvet ropes just for me, bypass all the other guests in line who are left outside for their turn in.  People thinking, "why does she get to go back there when I've been here longer?"  It's a strange situation for someone who until now has never been considered medically "vulnerable".  The energy I have used throughout this process to prove to myself and others that MOST days I am or will be at 100%.. to be treated in this way at the hospital is sort of a reality check.  No, you're only fooling yourself if you believe to be 100%.  Serious things can and do happen.  Even to unflappable me.

Full hair perfectly coiffed, I sat for about 5 minutes until they call my name.  I skip past the woman who thinks she broke her arm falling, the woman who complains she can't get warm, a few others, past triage staff right into what is deemed the "Red Zone".  People staring, probably thinking, 'What's wrong with her?  She's walking!'  Past all the other Red Zoners, white and cold, in beds and connected to tubes, most of them older and on oxygen.  I get assigned to a tricked-out semi private room with plenty of cold metal serious machinery.  No flowered sheets.  No TV.  Immediate attention.  The ER doc running through the litany of questions.  He's already been on the phone with the oncologist.  And the on-call surgeon.  Running tests.  Blood..ultrasound, X-ray, right away.  No, he says, I won't release you until I talk to your on-call one more time.  The hospital equivalent of the penthouse guest at the Plaza Hotel.

It still took upwards of 3+ hours to get out, but in the end seemed like a bad case of tendonitis.  No signs of infection, no visible blood clots.  Fire alarm?  Maybe so, maybe not.  A reminder that I am in charge but fully accountable for my care.  Yes, I guess I am medically vulnerable.  Yes, I have to rely on the people around me to guide and help me through this.  Yes, I guess I have to take a step back and understand that cancer treatment is serious business, and not a part time hobby, but from up until now has been an easy process.  It still could be so much worse.

July 6
Chemo number 3.  I believe every chemotherapy treatment should be a celebration.  One giant step closer.  More of the medications that will save and prolong my life and push along this rebirth.  Around people who care about me.  Because they want to.  These days are truly gifts.  Sean runs out to test drive a couple cars we may like to buy and to bring me lunch...turkey, Swiss on a spinach wrap and a celebratory coconut fudge brownie we share.  I catch up with the woman from three weeks ago who comes in for regular iron infusions.  Her driver even remembers me and asks about the twins.  It feels like home in a way.  My oncologist seems genuinely thrilled with my progress and the continued shrinkage of my mass, this time by roughly another 1 to 1 1/2 cm.  I look forward to the day he needs something more precise than a tape measure to mark progress.  I marvel to him at my complete lack of nausea and healthier appetite after treatment 2.

He says, cupping the back of his head, "well people who drink and some alcoholics have actually numbed their nerve sensors to the point that they are unable to feel nausea..."
"Okay then.  So what you're saying is that all that partying in college paid off then, in a way.."
"Um, well perhaps.." he added with a chuckle.

Today's celebration came with an added bonus I didn't expect - yet another reminder that just when you get comfortable, there's always a curve ball lingering around the corner waiting to hit the medically vulnerable you.  The port, which I have actually stopped thinking about, is clogged and has failed.  Crimped beyond adjustment between my rib and clavicle.  Must be removed and a new one implanted.  This lifeline that took me too long to get used to now has to be removed and a new one put in.  There is nothing to decide, I must have a new one.  Maybe this caused me pain over weekend, maybe not.  A reminder that yes, this process should be treated like a celebration of the spirit and soul but treated seriously in the physical sense.  More surgery.  Probably in the next three weeks.  More lessons.

July 7
I read - and wept all over again - for myself and over a friend's blog that she published today chronicling the start of her own breast cancer journey.  She is younger than me with three small children, including a set of three year old twins, just like me.  When I published mine, she read it, and told me that in reading my blog was reminded that she too needed to have a follow up mammogram.  Remarkably, she received her life altering diagnosis - over the phone - on the very same day as my first chemotherapy treatment.  I wept for her and her emotional pain of a roller coaster she is undoubtedly on right now but also in hopes that she too can find comfort in the release of online journaling, as I have.  And to remind others of the importance of check ups.  I have found my very own co-cheerleader and I hope she knows she has one in me.  We are fighting for ourselves and each other.
  
Finally picked up our new wheels.  We involved the girls and let them climb around in the back while the sales manager walked us around our new vehicle.  They were so happy sitting in the back and pretending to drive and practicing strapping in the seatbelts.  A new adventure for them.  They have only been in the van and our old truck twice.  The sales manager stopped and said, "both your girls look like you....especially your hair."
"Yes", I said, smiling. "they're a lot like me..."
And that's a good thing.

Chemo Round 2 - June 15

The Cancer Country Club?

Chemo Round #2 - Went ghetto - bypassed the valet parking service and walked the short distance from the parking garage into the warm sunshine.  Passed by a couple of shiny limos lined up at the entrance and walked into the bright atrium to live piano music and a brunch spread with pastry, sandwiches, bagels, fruit, juice, delicious enough to serve in a top day spa.  People gathered around the bistro tables singing along, smiling, toe-tapping.  Volunteers announcing everyone is welcome to partake.  Happy conversations between well-heeled personal assistants, patients, and family.  Perhaps Julie the Cruise Director was on the Lido Deck?  Where is the pool bar?  While I stood in the atrium and soaked up the positivity, I forgot for several moments the real reason I was there.  Even my appointment slip refers to me not as a patient but a 'guest'.  Refreshing...in a strange sort of way.  Completely blows my perception of what a hospital setting should be.

  
Has my Squatter figured out it picked the wrong chick?

Made it up to the second floor, quietly announced my 30 minute lateness (to which the reply was, "you showed up on the right day, so you're not late") and was escorted into the back for bloodwork and vitals.  After another short wait, where another volunteer offered me candies while pushing a cart displayed with handmade hats, scarves and wraps, sat down with my oncologist to discuss side effects, essentially, bone pain pretty well controlled with Tylenol, very mild manageable nausea, only needed 2 Zofran, and discomfort from the surgery, but generally, not bad.  By Day 4 of the first cycle, my energy had completely returned as did my appetite and even did a few light workouts on the elliptical trainer.  Confided in the oncologist that honestly, the worst thing about the experience was the hair loss, but it's gone now, and in a way, nearly everything is better because I have regained some control.  I appreciated his concern for my head as much as the rest of me.  He took a rough measurement of the squatter and determined that it in fact had SHRUNK by slightly more than 1 cm.  THE POISON IS WORKING.  He reminded me that he first measured me about 2 weeks prior to my first chemo so the actual shrinkage may have been more.  IT IS SMALLER NOW.  I nearly ran out of the examination room only wearing the flimsy paper vest....elation!  A tiny, huge, perhaps statistically insignificant but incredible piece of good news for me.  Bring on the toxins!  I am raring to go!  The best news I could have enjoyed with my husband on our ninth wedding anniversary.  A day we will remember.  Sean and I spent the afternoon together waiting for the end of my infusion discussing our plans for our tenth, and as nice as the Cancer Country Club has been for us, Tuscany seems a little nicer.  A plate of little necks and crab cocktail for dinner and a walk through Denville for gelato.  The nicest day ever with my best friend!

This chemo stuff is a bunch of hype - June 18

What side effects?  Day 3 I crashed for about 2 hours, true to form as last time, today is Day 4, no more bone pain, no nausea, just sort of tired.  Actually, really hungry but going light and just grazing all day...although I'm dreaming of bad foods and Dinosaur BBQ.  Dozed for about 30 minutes.  Not really wanting to do much, but not debilitatingly exhausted either.  At peace.  Amazing little people around me.  My amazing large son packing up for Rider University for a week tomorrow.  He has been an amazing help lately.  Counting my blessings;)            

no more head games

June 10:  I knew this was going to happen.  Everybody said so.  Despite my oncologist's promises, I dreamed I could defy the odds.  No, I'm not trying one of those dry ice Penguin cap treatments.  I have all I can do to remember to take my meds.  What happened to sleeping a straight 8 hours?  I keep waking up in the middle of night to see if there's any left on my head.  I was prepared for this.  Tingly prickly sensations running through my scalp.  What's left has the texture of peat moss.  Why must this be so hard...please let this be the worst it gets...I will be so incredibly grateful if this is all there is.  I promise!  It's just stupid hair.  I'll feel much better once it's all gone.  The worst of it will be over.  My secret won't be one much longer.  Is it twisted to wish that I could sacrifice my sick breast right away in order to save my hair?  After all, you can stick a sock in your bra - like all 4th grade girls do - and your secret is still safe.  I saw a bald woman in the store yesterday.  I immediately thought, "poor thing, she's sick and fragile with cancer"... How dare I think about her in this way!  I am not cancer, hair or no hair.  I would not want or need anyone's pity.  She is not me, but sometimes maybe she is.  She is probably not cancer and probably not interested in pity either.  What's the big problem, right?

It will be cooler in the summer
Always got so many compliments on my hair
All the bathroom cabinet space once filled with overpriced promises of shine and bounce I will have for other things now
Just starting to love the short cut
All the time I will save not having to deep condition, comb, curl or flatten
Wore it in a messy ponytail half the time anyway
Always loved to color it - everything from platinum blonde to deep chestnut
Can blow my salon budget on jewelry and hats
No more obsessing
Can't wear too much makeup now
A rebirth of sorts
Can't hate my hair anymore
Hair loss is temporary
Fingernails, toenails, eyebrows and eyelashes too?
Have never seen or felt my own bald scalp before
Was born with more hair than I'll soon have
Going to look like the guy from the movie Powder
A badge of honor
My son looked away when I pulled a handful out and hasn't looked back since
Getting a tattoo on my head would probably really hurt
There is a lot of hair I am not missing (yeah, you DO know what hair I'm talking about)
What am I sweeping up - mine or the dog's?
Sent a frantic text to Sean to find me the biggest, stickiest extra-hold can of Aqua Net he can find in a futile attempt to prolong the inevitable.  He came home without checking his messages.  Then offered to drive back out in the rain for some.  I wouldn't let him.  Probably better that way.
Time to stop figuratively pulling my hair out about literally pulling my hair out

June 11:  After my husband gently informs me that there is now a bald spot in the back of my head, threw on my new batik inspired do-rag and checked out an Ethiopian restaurant in Montclair.  Pulled out some sterling dangle hoop earrings that I haven't worn in 10 years.  Gianna announces, "You have a pirate hat!  Arrrrgh!"  Somehow my neo-hippie-Bohemian look works in the cool calm setting.  In between deciding whether I like the injera and exchanging online posts tinged with potty humor a 12 year old would appreciate, another seemingly cancer free, full-haired evening.

Got a beautiful facebook note from my hairdresser Denise.  And was reminded again that this situation impacts not just me, but everyone around me:

                                                                    ...


To My Friend
by Denise Caruth on Saturday, June 11, 2011 at 10:45pm
My wonderful friend Teresa is going through Chemotherapy and is losing her hair. Tomorrow I will be doing something I have never done before in my entire career as a hairdresser, I will be shaving her head.
Over the years I have helped many people go through the process of growing their hair back in from loss. I have shaped styles to work with the new and unfamiliar locks, and created a multitude of colors, but never the sacred erasure of them.
Tomorrow I will cry with my friend, I will be bold and courageous with her, I will be there in any way. I am truly inspired by her strength and her spirit.
She is a woman who deserves applause for her valor; she has and will do any and all things for her family to make sure she wins this battle. She is blessed to have an amazing husband Sean and 3 wonderful children Ed; her incredibly smart and talented 16 year old son; and her beautiful twin girls Gianna & Ella which she so greatly refers to as her “Assistant Warriors.” They are quickly becoming our Twinkies best friends.
So tonight I write this for my friend and for myself because I have so much emotion inside. I leave it on the floor with the hair and raise a glass to honor my friend Teresa and pledge to her my friendship and support in her fight for all days.

                                                                       ...

June 12:   An 11:00am screwdriver, okay two of them, and within a couple of minutes, with the help of vintage Soundgarden, Chris Cornell supplying the labor-like impassioned background vocals, I became reborn.  Three children but my first homebirth, Denise as my caring doula.

  

After vodka induced tears of joy and hope, and thanks for the happiness my friend and I allowed one another to experience, I wrapped my stubbly round pink bundle of joy back into my blue brimmed cap, enjoyed the four rambunctious children under three playing outside in the hazy sunshine, and concluded that there is still so much to understand about myself.  But most importantly, what will my new hair color be?  The canvas of my life just got more interesting and colorful and thought provoking.  Still can't take it all in, with no hope of a full interpretation before the museum closes.  And that's really okay.  

Drove out to Hot Dog Johnny's in Buttzville for our once per year excursion.  The Harleys impressively lined up and shined.  The buttermilk is still gross, but the dogs and fries great as I always remembered.

Ed started talking (and looking) at me again, became starstruck to have met Governor Chris Christie, got a picture, handshake and an autograph from him.  The three of us sitting down at the dining room table for a happy conversation for the first time in several weeks.

No doubt in my mind, an over emotional weekend, but thankful, absolutely believe the worst is behind me.  What a relief!

  

Dirty little chemo secrets no one told me

No where in all the books I've read, people I've talked or anything I've heard ever prepared me for any of this:

Vivid dreams.  Like the one where I'm at Festival in Rio running through the streets with no pants.  And my legs look great so I don't want pants.  It was probably really hot there anyway.  So is this my subconscious warning me of my impending quasi menopause from the chemo?

Or the one where I'm taking an old-fashioned steam engine train trying to get home, only to be dropped off somewhere on Route 287 northbound near the Parsippany exit in the middle of evening rush hour.  Are my kids watching too much Thomas and Friends?

Or dreaming that it was 1992 again and being at the Lollapalloza concert in Saratoga Springs, only I had nothing to smoke or drink this time and I actually remembered being there.  Do I secretly hope that I could undo the excesses of my youth?

Insomnia.  Maybe laying awake trying to self analyze isn't helping.  Most of my nighttime wakefulness is spent thinking about why I should have to medicate to sleep.  So there's all these chemo drugs.  Three of them.  One may cause an allergic reaction, so there is a fourth drug given to prevent that.  Two of the other drugs cause fatigue and nausea.  So add two anti-nausea meds and a steroid on top of that to counteract those side effects.  But remember, anti nausea meds cause other things.  So there's more meds to counteract the side effects of the drug that causes side effects from the chemo.  Oh, and chemo kills good cells too so here's another injection to boost white cell counts, but that causes flu like symptoms so take an antihistamine and anti inflammatory.....blah blah blah.  To say nothing of the recommended vitamin supplements.  So while all the side effects of the drugs to help the side effects of the chemo seem to be in good balance, the side effect to all of it is that I can't sleep, of course, without a sleep aid presumably.  A daunting task for someone who before this episode hadn't been given a prescription for anything in about 15 years.  And there's still 5 more treatments and so much more to go.

I guess the other dirty little secret is, treating cancer sometimes feels like you must surrender control of essentially everything.  It is not easy for me to become necessarily dependent on medications, other people and services to get through the day, and ultimately save and prolong my life.  Sometimes it is a relief to not have any decisions to make.  Sometimes it hurts.  I was back on the elliptical this weekend, not too many interval sprints but feeling more like my pre-cancer self for the first time in several weeks.  Perhaps there really is something to the dizzying laundry list of pills and potions?

Tomorrow my assistant warrior-girls turn three.  They tooled around in their new tricycles and played their little electric guitars wearing sequined princess tiaras and chocolate mousse cake on their chins.  It was one of those moments you realize is sweet and fleeting.  I will seek out more and more of these little moments that make time slow.  I will find more reasons to make all of this worth my efforts, good, bad indifferent and ugly.

Oh, the last dirty little chemo secret no one told me - Diet Coke now tastes like Diet Pepsi.  Horribly tragic on so many levels!          

I'm not alone

The chemo haze has lifted, hopefully. Gentle waves of nausea, fatigue, restlessness and weird phantom pain in hindsight were quite manageable. Not unlike a bad Sunday morning hangover combined with the flu combined with a good dose of humid Jersey summer weather. I'll pass on the sandy shore and the sausage and pepper sandwiches for now. I laid down for a short nap and when I woke, summer arrived. 

I knew that I wasn't alone when it came to the diagnosis of cancer. What I really discovered is that I am also not alone in terms of the people who have dropped everything to come to my and my family's aid. With kind words and thoughts. With supportive offers to help. For just being there. With genuine understanding and compassion that I guarantee will not be dismissed or trivialized. I am blown away with the graces of others we have received over the last few weeks. A remarkable gesture from an old dear friend follows. While we lost touch for a number of years, Kim sat behind me in calculus in high school...I am overwhelmed and simply beyond words. And, I know that I am incredibly fortunate to have this love and caring all around me. The one redeeming element in my fight is that everything will be worth it if even one less person will never have to withstand this journey. Thank you so much Kim for your wonderful gesture. Many others thank you as well!  

I didn't need another reason

by Kimberly Shenefiel Kuhne on Tuesday, May 31, 2011 at 10:34am

Hello Friends!

I am participating in my 4th Susan G Komen 3-Day

for the Cure event this September. I first did the event in 2001 to honor my

grandmother and aunt and other family members that have beat this disease. In

2008, I started doing this for my kids. They lost their great-grandfather to

cancer and I don’t want them to lose another family member to this disease.  In 2010 I started doing this event for the

sake of future treatment options for other types of cancer our family is likely

to face. By the end of  2010, I knew so

many people that have beaten cancer or are still fighting, that I committed to participating

in the 3-Day until a cure is found for breast cancer.

So you can see, I really didn’t need another reason to take

part in the Susan G Komen 3-Day for the Cure. Unfortunately, the powers that be

thought otherwise. In May, a friend from high school wrote to tell me that

doctors found cancer in her routine mammogram. Teresa is one of the 1.4 million

people that will be diagnosed with breast cancer in 2011. The difference this

time is that Teresa is a friend. Before this diagnosis, she was healthy and

feeling great. Teresa is my age, from my hometown, and has small children, just

like me. Teresa’s diagnosis could just have easily been my own. THAT is why I’m

taking part in the Susan G Komen 3-Day for the Cure!

Teresa’s diagnosis has prompted me to focus my fundraising

efforts this year in her honor. She lives on the other side of the country from

me. I cannot offer to drive her to the chemo treatments. I cannot offer to

babysit her kids or prepare her some meals. Really, all I can do is to raise

money to fund research and support services for people fighting breast cancer. When

September 16th rolls around, I’ll be wearing a T-shirt with Teresa’s

picture. I hope to have the picture surrounded by ribbons representing the

donations received in her honor. Teresa will still be undergoing chemotherapy

treatments while I spend 3.5 long days working toward a cure. Today, Teresa is

a breast cancer survivor. I am working hard so that she carries that label for

another 50+ years.

I know that money is tight for everyone right now. I also

know that if given the choice between a dinner out with the family or possibly

curing breast cancer, you would all choose to cure cancer! Please take a moment

to think about how much a world without breast cancer is worth to you. No

donation is too small, but the larger the donation, the more of an impact it

will have.

To make a donation, simply go to www.the3day.org/goto/kimkuhne  and click on the button “click to donate to

Kim in 2011”. There is a place in the donation process for you to leave me a

message. If you would like your donation to be in honor of Teresa’s fight with

cancer, let me know here.  There are ways

that I can honor other survivors as well, just let me know.

Thank you for taking the time to read this. Please feel free

to pass this on to others that know Teresa or others simply supporting the

fight against cancer. By working together, we can achieve a World Without

Breast Cancer!

-Kim

(Shenefiel) Kuhne

2x Walker, 3x Training walk leader, 2x Crew Captain for the Seattle

Susan G Komen 3-Day for the Cure