No, How are you?

As I work to chronicle my journey, it has taken quite some time to be able to craft words around the last seven weeks.  As described in my last post, October 31st was what I hoped to be, the last step to the new me.  I had moved past all of the angst and upset of a leaking expander to a place of optimism to face what I thought was the end of the journey.

October 31st came and went with relative ease; the actual exchange was complete with little complication.  Home and settled and ready to heal for the last time, it was time for the binding to be pulled away to view the final product.  Prior to the exchange I anticipated a symmetrical, reasonably normal outcome. That is, I expected to pull back the binding and see a replacement that looked like what had been removed.

But then the tears fell, hard…so hard that I can’t even recall who was with me in that moment.  Like a scene from a movie where there is a darkened shadow around a character where you only hear voices speaking to them, no source of the voices to be seen.  “They said this doesn’t have to be the final product…they said you aren’t done,” said the voice.  NOT DONE.  And I cried more.  I looked in the mirror at NOT DONE.  Extra skin and asymmetry, simply incomplete.

The next week brought the post operative visit to the surgeon.  Anger, disappointment, and fear all were unleashed, “THIS ISN’T WHAT YOU PROMISED!!” I said through another onslaught of sobbing disappointment. To this day, I am still not certain what happened during that surgery that caused me to emerge as defective.  So another, third, surgery was scheduled to again try to complete the reconstruction process.  Life went on, the tears subsided, and the image in the mirror became tolerable; it was a short-term problem.

In the interim, I returned to work, again.  The return was again filled with kindness and well wishes from those that surround me.  Days passed and it was time again for an oncology visit.  I hadn’t seen this particular doctor since we made the decision to have the mastectomy.  He greeted me with his sweet hello and we talked.  He said, “My you look well! How are you?”  I replied with my standard, “I’m doing fine, thank you for asking.”  He paused, looked at me, and said, “No, how are you?” and pointed ever so softly to my head.  And the tears fell again as we talked about the internal wounds that were still very raw and deeply hidden.  He talked that day about the healing that needed to occur inside, that the hidden wounds were the most difficult to mend.

Since that day I have worked to mentally prepare for the next step, and the outcome therein.  Recently, I shared with a friend that I was afraid, that I needed to hear that everything was going to be ok.  But that’s not what my friend said. Instead, I heard, “I don’t know that everything is going to be ok.  What I do know is that you have shown a great deal of strength and resilience through some incredible challenges and you continue to push forward.  What I do know is that you will one day feel whole again.”

It was those words that pushed me to this space that is so vital to healing my internal wounds.  A space where I sit in silence, reflect, and try to make sense of my world.  A space where words are crafted to unpack emotion, to mourn the loss of my former self, and to begin to not only tell the world, but myself, not that everything is going to be ok, but that the journey continues and I will one day feel whole again.

 

The Unexpected

I write because there is some woman, somewhere, who will, unbeknownst to her at this moment, have to navigate a journey similar to mine. That woman is likely to feel afraid, alone, and wonder “why me?”  For that woman, I want these words to be here, waiting for her to find, to comfort her soul, and to know that each step of the journey will bring challenges you think you won’t be able to withstand and celebrations because you’ve made it further than you ever thought possible. 

Having settled into a place of emotional peace, I was prepared for, what I hoped to be, the final step of this ordeal:  exchange surgery. I was well planned (selected the date that fit so very well into the schedule of life) and mentally prepared to move forward; November 16th was right around the corner. 

Saturday morning I woke with little pain, which was surprising since the afternoon before I had received my final “fill” that is usually accompanied by days of aching. Since touching my would-be breasts to ensure they are still there and nothing was wrong was now commonplace, I investigated to find the unexpected:  instead of the rock-hard texture of  freshly expanded skin, I found soft, malleable flesh. I knew immediately my expander had failed and the saline was slowly leaking into my body. 

To describe this moment as terrifying is an understatement. The panic, the worry, the breakdown that came with this moment….the mere possibility of having to start the process again brought me to my knees in tears. 

Fortunately, after a call to the doctor where her concern was minimal and best summed up with “this happens, not often, but it happens”, some of the panic subsided enough that I was able to spend the day with friends, keeping my worry contained inside, with only the occasional “volume check”. 

The “unexpected” drew out emotions I believe I had been fortunate to miss following my mastectomy; the feeling of loss of femininity and panic that I’d never feel whole again. I’ve watched my volume decrease and felt my anxiety increase with each escaping milliliter; the hope that this too shall pass. 

It’s time to go to work today. The easy road would be to stay home today until I can see the doctor again. But for those who haven’t had the luxury of being reconstructed, I’m showering, dressing, (albeit in a very baggy top) and heading out to face the day. 

My journey is a constant reminder that life can change in a moment.  Love hard, feel deeply, and embrace all you can. Tomorrow may come but isn’t promised, and even if it does may hold the fight of your life. 

The Intellectually-Emotional Conundrums of Life 

As time passes we all grow and learn.  Recently, my noticing has revolved around the intersect of intellect and emotion.

I consider myself a reasonably intelligent person on any given day; one who is able to interpret data and make decisions based on conclusions gleaned from the data available; Calculated. Analytical. Measured. Planned. 

However, as focused as I aim to be on the data of life, I find myself mired in the complex web of my emotions. I am learning that others in the world do not “feel” with the same depth and passion for ordinary events as I do. Although this is a rather reflective realization that helps me to better process, understand, and appreciate many aspects of my life, I find there is an equally blind spot to others’ perception of my rationally determined decisions. 

With my recent journey I have been so humbled and honored and embarrassed as folks describe my decision as “brave” or “strong” or even “heroic”. For, in my mind, there was a data set that had accompanying outcomes and choices. It was from the data that I made my choice….not so much the emotion. I didn’t perceive my decision to be brave or strong, just the logical outcome to the algorithm of life with which I was presented. 

So, it is in this space that I continue to struggle. Martyrdom has never, ever been on my agenda. Hence, it is such a challenge to graciously accept, much less discuss my decisions as “brave”, “strong”, or “heroic”. My decision, at least in my mind, was data-based and selfish (i.e. >80% chance of cancer without surgery +losing hair was not a formula with a positive outcome in my book). But those closest to me share their awe and admiration for my ability to make such a decision. Apparently I’m blind to the fact that many would rather gamble against Mother Nature than choose a proactive response. That with which many would approach with emotion, particularly fear or indifference, I approach with analysis and calculated logic. 

I’m not sure how many  others experience intellectually emotional conundrums. But for those of us that do, I want others to please just understand that we are thankful for your kind words and caring actions; that we are, like you, trying to determine our path.  Only, our path is fraught with emotional hills and valleys within the land of data.  

Life on the Flip Side-The Next Step

Almost 8 weeks ago this journey began.  Tomorrow marks the next big step on the flip side–the return to work.  Time has passed and both my body and mind have made progress towards a healthier place.  Although the journey is not yet complete, I have several take aways from my time at home:

  • Time heals, be patient: On July 27th I left work with the anticipation that I would return in just a few weeks.  When post-op week 2 ended both drains were “supposed” to come out.  However, one drain remained for an additional 4 weeks due to an infection.  I had no choice but to sit, to rest, and to heal.  There was nothing I could do to accelerate the healing and I felt helpless and useless.  But time passed, I became more comfortable, gained strength, and learned that one of my lessons on my journey is the value of patience.
  • Family is the root of all happiness:  In the last eight weeks I have spent more time with my sister than I have since we were children.  We have talked, texted, snapchatted, or visited almost every day since our surgery, though she usually ended up angry with me because I insisted she eat or rest.  But as I think about tomorrow, I know I am going to miss her.  Since during the day I will no longer be a short 5 minutes away, we will have to figure out how to continue our lunch and fro-yo dates.  I’ve also had the best caregiver ever.  My husband has been relentless in making sure I’m rested, well-fed, and comfortable.  I am thankful for his protectiveness and unconditional love; from providing his shoulder while I cried when the pain was unbearable to insisting that I sit when I wanted to start moving about prematurely.  And, I’ll continue to look forward to a daily message from my my father…a quick “good morning and I love you” to my sister and I.  Mom has, as always, been there for  anything and everything we needed…I’m thankful she has been able to fill in the gaps, even when we didn’t know the gaps existed.
  • Daytime television holds a wealth of knowledge:  Because of my time at home and my friends Judge Judy and Judge Marilyn Milian of The People’s Court, I can now tell you that you DO NOT enter a courtroom without copies of your lease, contract, receipts, text messages or pictures that support your side of the story.  I can provide you with the name of several personal injury lawyers, advise you on the many products available to reverse your aging, or share your local options for assisted living…just give me a call.

For those of you who have not seen me since I left work, I’m going answer the questions I know you have but don’t want to ask as well as provide you a few tidbits for you to avoid an awkward surprise:

  • Question:  I thought you had a mastectomy? (as you are glancing awkwardly at my chest clearly not understanding why it appears I have breasts)
  • Answer:  I did. I appear to still have breasts because there are expanders in my chest preparing my body for implants.
  • To those friends close enough to offer a welcome back hug:  Don’t squeeze.  The expanders are like two bricks beneath your skin and have the same feel and flexibility.  I’m used to it but it will catch you by surprise.
  • To anyone:  Ask away…I’d much rather you ask me questions about my journey than to wonder.  My sister has said more than once that given the choice of chemo or this surgery again, she would choose chemo without hesitation.
  • To all:  Know that the journey continues.  I return tomorrow with the hope that I will be able to give to you all with the same passion as before I left.  But, in the back of my mind there is still the uncertainty and fear about the next step that will sometimes occupy my thoughts.

Until the coin flips again…

 

 

Life on the Flip Side-forever and a day later

Today is the last day of summer vacation for my kiddos. In years past this day has been spent poolside with friends, savoring the last few moments of “freedom”. 

Obviously this summer has been a little different. My little situation  has kept me from venturing poolside; each week hoping the last drain would be removed and I could at least “try”. Unfortunately God must be insisting that I have a very large lesson in patience, vanity, and grace because 4 weeks later I’m still “with drain”. 

My family has cared for me so well, giving me anything I want or need and making sure I am comfortable at all times. Today had to be for them…

So today’s musing are being crafted poolside. The worry and embarrassment that my drain and corset are visible had to be put to the side: my vanity out the window for today.  As I write, we are going on hour four…my patience not at all stretched because I see my kiddos absorbing those moments of their childhood that we all remember with such fondness; my husband hopefully resting in our quiet home since he sleeps anywhere other than beside me so I can rest as well as possible. 

Today I’m  not up and socializing or lying in the sun chatting about what  tomorrow will bring. I’m at a table, moving with the shade to stay cool.  But, without them having any idea how vulnerable I feel today, my friends approach and we chat. And it’s with grace that I thank them for coming over and even more for their compliments on my healthful appearance.  

Today will end and tomorrow will start a new adventure for us all. But I feel certain when I look back on this chapter of my life, this day will be one of the bright spots that made the journey bearable. 

Life on the Flip Side: Week 2

Time heals all wounds….patience is a virtue…..yeah, yeah, yeah. I know in time I’ll recover and be able to look back on this journey with grace and thankfulness that the courage to act was there….but not today.  Week 2 on the Flip Side has been  a challenge.  The inability to move with ease and the loss of stamina that came with burning the candle at both ends has been tough.  I still move much more slowly than I’d like and have to rest a lot. This week’s journey allowed time to reflect:

On friends:  This week I saw many friends.  I felt incredibly cared for and loved.  Folks visited, called, or texted…all with well wishes for a quick recovery.  I think my favorite message of the week was one from someone who said “there is obviously a less in all of this….patience and slowing down might be one of them!” This is a tough lesson for me to learn, unfortunately this journey is offering no other alternative.

On the physical aspect of this trip:  There is no simplistic way to characterize the emotions associated with the first time the bandages are pulled back.  There is a sense of loss and grieving for the parts of you that are no longer there; pieces that distinctly characterized you as a woman.  There is a sense of horror and disgust at the incisions and holes that is paired with fear that you’ll never heal.  There is pain in movements that days before were routine and were taken for granted. Being able to once again put my hair into a ponytail without assistance was a moment that brought tears to my eyes…one small step in my return to independence.

On the pink corset:  With this surgery comes an horrific pink corset.  Not only do you have to keep your breast area bound tightly, but the discomfort of having your entire abdomen sucked into this ridiculous contraption day in and day out is noteworthy.  The temporary relief that comes with the few minutes when the Velcro disconnected can be best described as the pressure that is released when opening a package of canned biscuits.  You can therefore imagine the sensations that then come with having to shove those biscuits back into their tube….  Needless to say, the few minutes of changing bandages or bathing are my favorites of the day.

On Jake:  I think perhaps the one being that has been affected more than I ever anticipated is my pup, Jake.  Prior to surgery Jake and I would hang out in the mornings while I read, I was the one who fed him each day, and it was me that he snuggled with each evening.  Now, I am most comfortable in a large chair in our living room that doesn’t allow my Jake to sit with me.  Therefore, he sits beside my chair day in and day out.  He serves as a guard, barking at anyone who comes near.  I think Jake is the one looking most forward to my full recovery.   It truly demonstrates the unconditional love one receives with a pet.

Week 3 of my journey is here; more adventures and more lessons on the horizon.

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Life on the Flip Side: Week 1

One week later I’m on the flip side of the hardest surgery of my life.  I move slowly, I sleep often, and the biggest challenge is staying in front of the pain by taking medications on time.  Having approached this journey trying to gather all the information possible; asking all the “right” questions of all the “right” people, I felt mentally prepared for the “flip side”.  But I wasn’t.  At all.  Knowing that there is some woman out there, today, tomorrow, a week from now, next month, next year that will walk this journey, I want her WELL prepared for what is to come.  Here’s my version of Life on the Flip Side, Week 1, things someone preparing for a bilateral mastectomy and its subsequent recovery needs to know:  (Warning: I’m going to talk about vomit–read with caution)

  • Vomit: It IS possible to projectile vomit immediately after surgery.  I’m living proof.  Even after asking that additional medications be added to my sedation because I know I don’t tolerate anesthia well, that was my welcome back to the world of the living…oh, and I also learned that a side effect to intense pain is vomiting.  Moving to and from bed caused this response for the first 24 hours.  Good times.
  • Expanders: If you are preparing to undergo this surgery, you’ve been to the plastic surgeon and held the expanders.  Remember how rigid they are?  Yeah, that’s what goes into your body (along with 250 cc of saline) and consequently feels like you’ve been hit by a truck and the headlights are still deeply embedded into your body…
  • Moving: Before surgery getting in and out of a chair or bed is a task I took for granted.  It is a week later and I still have tinges of pain with just simple movements.  Getting out of bed alone, at least for the first several days, is impossible.  Be ready.
  • Drains: You will enter surgery with 4 appendages, you will exit with at least 6.  Welcome to the world of drains.  If your surgeon is giving you all the clinical information, you will know you’ll have drains.  Let me more aptly describe them:  GROSS.  Two tubes that pull the fluids (a.k.a. blood and other unidentifiable liquids (and solids)) into an egg-shaped bulb that hangs from your side.  Again, simply GROSS.  What’s even worse is I can tell you my average drainage in ml for the past week because you have to empty, measure, and dispose of that nastiness each day.  One more for effect:  GROSS.
  • Muscle Spasms: Before surgery you are warned of muscle spasms.  In hind-sight, if I could roll on the floor and laugh, I would.  “Muscle spasm” to me equated to a Charlie Horse in my leg or that unexpected jump of your arm when its been overused.  NOT SO.  Muscle spasms are NOT THAT.  I’d more accurately describe them as the pain one would associate with the “meat” of your muscle being torn in two.  Think of a piece of beef jerky; that sound, the effort to tear it…yeah, imagine that happening in your body…at any given moment.  Thankfully those have subsided for now but I dread the first time my expanders will be filled because I know they will return.
  • Accept help:  Before surgery we had folks to offer to assist in any way possible; from running errands to cooking meals.  Before surgery we felt like we’d be fine; I wasn’t the cook of the family and my kids are old enough to fend for themselves if Dad had to leave the house.  My first day home my daughter kept saying, “Mom, you have lots of people who want to help, what do I tell them?”  She had set up a few meals with friends via text already but I told her to just handle it.  One of our friends helped her set up a meal train and I can honestly say it was one of the best decisions we made…accepting help.

With each day there is something small that happens that demonstrates progress.  I still can’t imagine functioning normally again.  But I do know time heals all wounds and perhaps Week 2 on the Flip Side will bring more independence, more smiles, and maybe even a dose of the sun.