A Video and Thanks

I have been providing updates on my website: www.sarahfenlonfalk.com and consequently have been letting this blog go.  I wanted to let those of you who still follow me here know where to find me and keep up to date on the cancer journey, book project and all in the life of the Falk family.  Here is a video that will be playing in the Chicagoland area in the month of October for breast cancer awareness month:
The Lexus and NBC 5 Salute to Cancer Survivors
I'm so thankful for all of the support, encouragement and prayers...

Hurdles and Bumps

"Just another hurdle on the road to recovery."

I ran track in high school for one year.  It took me two years to get the guts to go out for track, then after running one year I was diagnosed with bone cancer in my left femur and have been unable to run since.  I remember back in those days, during practice after a long day at school, we would run until we couldn't run any more.  Sitting there huffing and puffing, trying to catch my breath, I would look at the hurdles set up along the outside of the track for the hurdlers to practice.  The hurdles were so tall, about up to my chest, and I would think, how in the heck can anyone jump over those?  Most of the female hurdlers were no bigger than myself, so I simply could not fathom how they were able to get there legs apart wide enough and foot up high enough to get over the thing.  I loved watching them practice though, it was amazing watching legs propel faster than what seemed should be humanly possible, legs stretched almost in a straight line-one ahead, one behind-and up into the air with the hurdler.  It almost looked as though they were flying.  And they might as well have been as far as I was concerned

Here I am at the edge of my hurdle.  The next bit to get through.  The next hill to climb.  The next thing to overcome.  I'm not excited about having surgery.  I will say I am excited about the time I will have off afterward, but not thrilled about having drainage tubes on either side of my body for a couple weeks, or the pain of incisions and manipulated muscles and temporary implants.  I am looking forward to eliminating a potential threat to my health.  And while I'll miss my kids while I'm in the hospital, and then miss playing and wrestling with them for a while after I return home, it will be worth it for the many more days I am hoping I will be able to be in their lives.  That's the whole point of this hurdle.  To buy more time.  While I can't fathom what the next few days are going to bring I am planning on pushing myself, like the hurdlers in practice at Cheboygan Area High School once did, and fly!

"Just another bump in the road of life."

Yes, it is time for yet another one of these.  Technically, two bumps, as a coworker's sister so astutely pointed out.  (She just had a double mastectomy herself, she's earned the right to joke like that!)  I laughed when she said it.  If you don't get it, two bumps because both breasts will be surgically removed (mastectomy) and reconstructed.  And "two bumps" because this isn't the last of the surgeries.  In another several months (maybe about 6) I will be having another surgery to put in the permanent implants.  In the meantime, the expanders that will be placed immediately after the mastectomy on Monday will be filled little by little to stretch the chest muscle they will have been placed under.  Then once they have been stretched to an appropriate size the surgery for the permanent implants will be scheduled.  Beyond that, in another several weeks, after surgical wounds are healed, the detail work of reconstruction will take place to create nipples and areola.  

All throughout the reconstruction process I will be receiving Herceptin treatments by IV once every three weeks.  Herceptin is the targeted therapy that is used to block the Her2 protein that was feeding the tumor in the first place.  The deal with Herceptin is that it effects the heart.  And since my heart has already been effected by previous chemotherapy from 1991-92, I have to be followed closely by an Oncology Cardiologist.  As has been the case in my care, I was sent (by God and a google search) to a wonderful doctor at the University of Chicago, Dr. DeCara.  She was very kind, patient and knowledgeable and seemed interested in my case as well.  I'm very thankful to have added her to my team.  After each Herceptin treatment I will have an echocardiogram done and she will look it over to be sure the treatment does not do any further or lasting damage to my heart.  The positive thing about the effect that Herceptin has on the heart is that the heart typically bounces back after discontinuing the treatment.  So, all in all my visit with the Cardiologist was very positive.

My visit with the Cardiologist was positive as was my visit to my GP this week.  I didn't actually see the GP (general practitioner) but instead saw his Nurse Practitioner, Liz, who has been on my team for a long time.  I was being seen there to be cleared for surgery.  And while I have had a cold for about a week now, everything else checked out and I was cleared.  Liz did call yesterday to see if the cold was gone yet.  As it is not, she ordered some medication for me to start immediately.  Although I am tired I must say that the symptoms have reduced even since yesterday morning and I am feeling better.  Let's hope Monday's surgery will be a go.  I'm nervous that I'll get there and they'll send me home again.  If that's the case then surgery will most likely be rescheduled for November.  But, I'd rather wait than take any risks just because I want to be done with it.  The anticipation is no easy thing to cope with, but I can wait if I must, if that's the safer option.  

Now as the day is so close I find myself withdrawing a bit, getting frustrated very easily, and feeling as though there is not enough time in a day to get my tasks done and spend time with my children.  Even though I won't be in the hospital for very long I am feeling and acting as though I'll be away for weeks.  Perhaps this is because I know my activities will be limited after the surgery, so I've been getting in all the chores, boy-wrestling, baby-lifting, and home-rearranging that I could handle in the last few days.  And now it's time to go to sleep and wake up to "the day before".  Those days always go quickly.  Instead of dwelling on the event to come I think I'll visualize the hurdler, defying gravity, gracefully leaping over something that is almost as tall as they are and totally blowing the minds of on-lookers.  Yep.  That's what I'll do.

Firsts and Lasts

It's been a couple weeks of firsts and lasts around our household.  I've been very emotional.  The first of the firsts was our oldest boy Bobby loosing a tooth.  It wasn't as dramatic a thing as I remember tooth removal being when I was loosing them.  He was eating breakfast one day and his loose tooth just fell out.  This being a Sunday morning, Bobby requested to take the thing to church.  So, mother that I am, I found a tiny zip lock baggie type thing (the size that used to hold a spare button for a shirt), punched a hole, tied a string and he proudly wore that tooth around his neck all morning.  He was sure to put it under his pillow that night in hopes of the tooth fairy bringing him "a coin" in exchange for his tooth.  I thank Jake and the Neverland Pirates for setting the expectations low by suggesting that the tooth fairy brings "a coin" for a tooth.  Bobby did however receive a dollar bill AND a coin (quarter) from the tooth fairy for his first tooth.  That first tooth was followed by a second tooth not more than two weeks later.
Which brings us to another first, kindergarten.  I find it difficult to fathom the passing of time which has brought us from returning home from the hospital with a tiny, helpless baby to then dropping said baby off at a building miles from home for multiple hours in a day with people we have barely met.  And all of this apparently "normal".  I can't express how nervous and sad I was leading up to that day.  My son on the other hand has been looking forward to his first day of school for months, possibly longer.  We drove him to his first day of school and I was able to walk him to his classroom.  He was cool as a cucumber.  Once inside he behaved as if he knew exactly what he was doing and was eager to do it.  I shed a few tears as I left him there that day.  Those tears were for me, not for him.  He has enjoyed each day of school more than the last.  I'm so thankful he likes it.
The same week we took our oldest son to kindergarten was the week that our youngest son, William, turned two.  Just a day or two before his birthday I entered my bedroom and took inventory of a stack of baby carriers and books stacked there (waiting to go to another family by way of eBay or baby-wearer's Facebook page) and saw in that pile the baby book I had bought for William before he was born.  The wrapper removed, no entries made.  I have a million or more pictures of the boy but have yet to write in his baby book.  (All milestones are documented on the kitchen calendar from last year and this).  So we officially said good-bye to the baby stage.  This guy is a little boy, but for the diapers and bedtime miney (pronounced mine-e, what the twins called their pacifiers and the name stuck).  Our last baby, growing up so fast.  He does his darnedest to keep up with his three older brothers.  He does a pretty good job of it too.  Counting, reciting ABC's, learning bedtime prayers, singing songs, playing games and navigating tech (iPhones, iPads, etc.) like he was born with it in his hands.  It wasn't long ago I was tucking him into his little carrier at the park, feeding him from my own body, watching him learn to roll over, sit up, pull up, stand.  Again, the passage of time confuses me.  Looking back at pictures of this child as a baby leaves me in awe and wonder: was that a hundred years ago, or just yesterday?  
And as I contemplate these firsts and lasts, I consider the firsts and lasts I am experiencing with this body of mine.  Though my PET scan and breast MRI showed that I am clear of cancer at this time, my genetic risk factors are so high that a bilateral mastectomy will be done a week from Monday.  Preparing for the surgery has been an interesting process thus far.  Really I feel like I've been preparing for it since I found out I had cancer back in February.  I've been gathering my facts, talking to people, reading, etc.  But I've also been going through a phase that looks a lot like the nesting phase in pregnancy.  I'm making sure everything is just so because once the surgery is done it will be weeks, almost months, before I'll be back to full capabilities.  I'm trying to grasp what will be happening to my body in the course of this surgery next week.  It's quite an emotional thing.  At the very least because I've taken for granted the idea that when my soul leaves this body, this body will still have all it's original parts.  In 1991 when going in for surgery to remove the tumor in my left femur, not knowing whether or not I would come out of the procedure with a leg or not, I never considered actually losing the leg.  I assumed, or perhaps I was unable to think otherwise, that I would come out with my leg in tact.  And I did.  But now, with breast cancer and in this upcoming surgery, the doctors will remove, parts will not be spared.  In my mind I have made peace with the fact that this is for the best.  I sense it's the right move to make.  However, I'm also acutely aware that I am spending the last days with all my original body parts.  I am blessed beyond belief that there are surgeons (artists, really) who can remove what was diseased or holds potential threat and replace it with form and shape that once healed, will restore a sense of balance and normality to this body.  After September 14th I will never be the same again.  I'm not the same person I was yesterday for that matter.  Last days are being celebrated and mourned here,  but there is also an expectancy, a hope, of firsts yet to come.

Re-Gifted

Several years ago, while reflecting on my cancer journey from 1991-92, I wrote a song. When I write, sing, play my guitar, I truly feel God's presence.  I believe His Spirit fuels the flame of inspiration.  Inspiration is a gift!  James 1:17 says, "Every good and perfect gift is from above, coming down from the Father of heavenly lights, who does not change like the shifting shadows."
The beauty and wonder of His divine presence illuminates the holy and supernatural in what may otherwise seem mundane, "normal" or ordinary.  To me, nothing is ordinary.  It's our vision that imposes limits on the extraordinary.  
That song, written in the early 2000's, was sung at cancer walks, cancer survivor events, church functions and even for personal reflection.  When I was diagnosed with my second primary cancer in February of this year I turned to that song and could not. recall. a. single. word.  I had the tune in my mind, remembered the chords for guitar but could not pull the lyrics for anything.
I frantically rifled through all handwritten songs, notebooks, and journals looking for it. Nothing.  I searched all Word documents, folders and files to no avail.  That song was gone.
Apparently, I had trusted the song to be so engrained, so much a part of me that it did not need to be written down.  It was drawn from such a deep and important time in my life, how could I forget it?  I can't explain how upsetting the loss of those words was to me.  I was soul sick, and almost physically sick over it.
"Pray about it," my mom instructed when I relayed my frustration and sadness.  This being a standard response to questions posed and problems presented, I will admit I did not immediately heed the advice.  However, a few weeks later I did pray.  I prayed just a few weeks before losing/misplacing an important ring.
I prayed, "God, that song was a gift from You the first time.  I'm asking, please, return the gift to me in the perfect time, in the perfect way."  Then, I had to let it go.  And I did.
Weeks later when I thought I had lost the afore mentioned ring that a family member had given me and again felt that wrench in my stomach.  I prayed a similar prayer then, "God, if the ring is meant to be restored to me, please bring it about."  It was nearly a week later and the ring was found in a bag that had been unpacked from a recent overnight trip!
The finding of the ring reminded me of the song and I prayed again for it to be returned to me.  Then yesterday I received a call, THE call from my surgeons office to schedule my surgery.  I'd been humming the tune of my song all day in hopes of shaking loose the memory of it's words.
My surgeons have been waiting for me to decide on a date for surgery.  They had put me on their calendar with a question mark for September 14th.  This date is not ideal as one of my cousins is getting married in northern Michigan on Saturday the 19th.  If I have surgery that Monday I will require support and assistance with all ADL's (activities of daily living) for at least the first couple of weeks.  I'll be back and forth to doctor's appointments as well during that time and will need the extra help for the fellas.
While I am most thankful to have Pete, a supportive husband with vacation days and an understanding superior and Cindy, a soul sister with a flexible schedule and the willingness to help whenever it's needed, I am sad that I will be missing the wedding and a virtual mini family reunion.  It also puts my family in a pickle-feeling torn between being present for me or being present at the wedding. Just not an ideal time.
When in the conversation with the surgeons office it became apparent that the surgery would need to be on September 14th or else the unforeseeable future, I ripped the proverbial bandaid off and confirmed for the 14th.  Emotionally I just need the deed done. The wait is excruciating.  Having an actual date is nerve racking, nonetheless:  Monday, September 14th.
My boys and I had been playing at the park with friends when the call came.  I felt physically weak after making the decision to schedule the surgery and was thankful it was time to go soon after hanging up.  I continued to hum my tune as the boys raced back to the van and all piled in, buckled in and yelled their music requests.
I continued to hum, and as if by some miracle words flooded into my mind.  I had prayed for the gift to be restored at the perfect time.  Some, not all, of the song was returned to me that afternoon.  I sung the words of the bridge and the chorus as if they were never lost, they come forward as smoothly and confidently as ever:

                        And in my darkest hour You came, bringing strength to my weakness
                        In the midst of all my pain, You held me up within your hand where I sing

                                                            Faithful, You are faithful
                                                           Loving, You are so loving
                                               Precious, You are precious, Lord, to me

Life and Death, Daily

I've been kicking around thoughts about life and death these days.  I say this knowing I run the risk of sounding irreverent or even flippant when the idea of death is introduced.  That's how it is in our society.  Death is a taboo topic.  I will admit I've been afraid to say the word a time or two or to allow myself to think too deeply on the matter because I didn't want to "jinx" myself.  After all, our thoughts effect our lives in very real and lasting ways.  But recently Pete brought a book home to me from the library, Being Mortal by Atul Gawande.  This book, as you might expect given the title, takes a look at how different cultures approach mortality and what impact our views about death have on our lives.  I made it about 3 chapters in before it was due back.  (I was chewing on it, not just breezing through AND I have 4 children and 2 jobs!) What I read floored me.  I had even read the introduction, something I will admit I usually skip.  Atul Gawande is a doctor.  As someone who has both worked in the medical field and been a patient of it, I have seen and experienced it's shortcomings.  Dr. Gawande has too and focuses on some of the dehumanizing practices in the industry.  He also shares his thoughts and experiences regarding the beauty that can be found in caring and being cared for, living and dying.  I think I need to own this book.
Dr. Gawande's words triggered more thoughts about dying for me.  Not the fear that I am going to die, or the idea that I need to prepare myself for a near and untimely death.  But, to try to acknowledge death more openly.  To approach aging, living, dying with a confidence, a strength and dignity.  Death is a very natural part of life.  Perhaps it's easy for me to say that as, after completing chemotherapy treatment, I have received an "all clear" from a PET scan and breast MRI exam.  Yes, good news!  And I thank God!  Yet, even now as I am planning surgery as part of my treatment and prevention, I'm reminded there are no guarantees in this life.  I am given the moment and hope to cherish it, not let it pass me by.
So I allowed myself to contemplate the reality of death being a natural part of life.  One of the interesting things to consider about living and dying is that we carry around death and life in our physical bodies every day.  Our bodies experience different types of cellular death moment by moment.  In the event of an injury the cellular death is of a traumatic nature called necrosis, a result of acute cellular injury.  Apoptosis is a highly regulated form of cellular death, a controlled process that is for the benefit of our life cycle.  Our bodies experience the birth of new cells as well, the rates vary.  (If our cells fail to die regularly as in apoptosis, but instead continue to produce, a tumor is formed.)  Life and death on a cellular level.
I also considered this daily experience of life and death on a spiritual level.  I recalled a verse I had been given by way of encouragement while I was going through my chemotherapy treatments and one I've used during past difficult times: 
2 Corinthians 4:8-9 "We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed."  
But it was the next verse that really caught my attention this time.  Verse 10:
"We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body."
I am no theologian.  (That's my disclaimer).  But it stands to reason that even as Christ died, so also must we all die.  If God's own Son was not exempt from this experience on earth, how then would I imagine to ever be?  Any followed prophet or holy person in our history on this earth has been made subject to it.  For the Apostle Paul writing this passage, it was because of the death and resurrection of Christ that he was intent on dying to himself, putting aside his personal desires and expectations so that the life and message of Christ was what was seen in him.  Dying to self and surrendering whatever would be to the strength and will of the God he served.  
I believe this is the message for me in the midst of all these thoughts of living and dying: choose to live life well, to the fullest, while dying to my own expectations of how long life should be and everything I would want life to be.  This allows me to move graciously forward into an uncharted future; holding all that I have and am with open hands; making precious each and every moment.
Of course I have wishes and a will of my own.  I have expectations and desires for this life. But as I integrate those times and places of frustration and pain, I will grow.  I will find beauty in the pain and pleasure, the living and dying.

The Number of My Days

I've been feeling so exhausted lately.  I'm almost certain it is from sheer mental and emotional overload.  The recent days have been filled with doctors appointments, trying to arrange and rearrange schedules for more appointments and an upcoming surgery all the while planning to send my oldest baby off to kindergarten.  The last two events are ones I am not in the least prepared for.  How could I be?

I read something about how surprised by time we (and "we" being everyone) tend to be.  We remark about how fast summer has gone, how quickly babies and children grow and how holidays seem to run together anymore. But what is more natural than the passing of time?  Yet I am one of the first to make any one of the mentioned remarks and to truly be amazed by it.  When I consider these things I become almost frantic and sad.  I can never have tomorrow back.  Bobby will never be a "preschooler" again.  The phases my children have passed through are gone forever now.  That makes me sad.  Forgive me for being graphic, but when I consider the permanence of cutting off a body part or two as part of cancer treatment/prevention, it makes me sad.  I have actually envisioned waking up from surgery crying, realizing that what was done can never be undone.

So perhaps part of this exhaustion I'm feeling is a byproduct of the grieving process. Grief is a natural and arduous journey through various emotions all in relation to the loss of something or someone.  (My definition).  Our society tends to take what is known as ambiguous loss, for granted; those losses that are not directly apparent.  For instance, it's obvious one would grieve the death of a loved one or pet, but not always "obvious" to grieve an unfulfilled dream or the sale of a childhood home.  In my case, I'm grieving a number of things: the loss of health for starters, but also the disruption of my family life, and what will be lost after a bilateral mastectomy, to name a few. 

To balance out the sadness (not dismiss it or minimize it), I have made it a point to look at the flip side of the coin.  This deep sadness has led me to deeper relationships, grief has taught me greater empathy, frustration has led me to seek peace in solitude, and disruption has stirred up creativity.  I bless God for the fact that my family is healthy.  I am so thankful for an abounding support system. There is beauty in the midst of pain and emotional exhaustion.

When I become anxious about the fleeting passage of time I have realized that it is wise for me to learn to be more mindful and present of and in each moment.  As I have been reflecting on these lessons I find these words coming to mind "teach me to number my days".  To me this is a measured approach to mortality, a reminder that every moment is rich.  Instead of whipping myself into a frenzy so as not to "waste a day", I am savoring each moment.  I am not rushing in to tomorrow.  I am not bemoaning the passage of another day.  I simply am.  I know that I will not be forever.  But right now, I am.   

Psalm 39:4-7 (New Living Translation)

4 “Lord, remind me how brief my time on earth will be.
      Remind me that my days are numbered—
      how fleeting my life is.
5 You have made my life no longer than the width of my hand.
     My entire lifetime is just a moment to you;
     at best, each of us is but a breath.”
6 We are merely moving shadows,
     and all our busy rushing ends in nothing.
     We heap up wealth,
     not knowing who will spend it.
7 And so, Lord, where do I put my hope?
     My only hope is in You.

So, after another day of mental and emotional exhaustion I've decided to rest here.  Understanding and being content with the fact that my life is but a breath.  I don't need to rush around, gaining nothing.  I put my hope in God and find peace in the moment. 

Bridle This Blessing

I'm preparing for a colonoscopy tomorrow.  There are worse things.  But I cannot say how many times I have had to remind myself that I cannot eat today.  (Liquid diet until midnight then NPO).  It's amazing how often throughout the day I have gone to put something in my mouth reflexively.  As I was making breakfast and lunch for my boys, while I was cleaning the kitchen, and now as I sit at the kitchen table to write and there is a bowl of fresh-out-of-the-garden peas nearby the urge to eat has been a tough one to overcome.

The good news is that after 4 months of struggling to get food into my mouth past chemo-riddled taste buds, I am now able to eat.  Slowly over the past few weeks my taste buds have been healing.  Food went from being abhorrent, to just not-awful, to most things are alright, and now everything tastes good and I am out. of. control.  
The last few days I have found myself eating anything and everything that crosses my path. It's a luxury and a pleasure that I have been missing and I am not holding back now.  This is not a good for a number of reasons.  First, sugar feeds cancer.  Since I am in the business currently of working to rid my body of cancer this sugar consumption is counterproductive to my health and wellbeing.  Second, I am diabetic and know well enough to limit my sugar and simple carbohydrate intake.  Finally, I am rapidly gaining back some of the inches I had lost during chemotherapy.  While I could afford to gain back some, it is the bloat from eating foods that are toxic that is the issue.  I cannot afford to neglect the health of my body in such a way.
As I contemplate the blessing of being able to taste food for real and to eat without choking, I realize I must work to bridle this blessing.  Bridle: to control or hold back; restrain; curb.  If I do not exercise self-control, discipline and restraint here it will be detrimental.  In order to do so I must plan.  Before my diagnosis I had worked very hard to become structured in my eating and meal planning.  I didn't hit the mark 100% of the time but I did a very decent job of it.  Now it feels like a free-for-all and I want to allow it.  It's time for a visit to my nutritionist.
I am thankful for taste buds that have been restored.  I am blessed with returning strength. I am also very grateful for the lessons I have learned this go-around with a cancer diagnosis. I have learned so much about nutrition, my body and how to care for it, healing and wellness.  Because of this knowledge I will make wise and healthy choices.  I will bridle this blessing.  

No Simple Decisions

I saw my second surgeon on Friday.  Second surgeon because someone as special as I must have not one, but two surgeons.
I'm kidding.
Two surgeons because one is the oncology surgeon who performs the mastectomy and the other is the plastic surgeon who begins the reconstruction.  My visit with my oncology surgeon last week had rekindled a lot of confidence in me as chronicled in my post "Picture Everyone Bald".  I was hoping to keep that momentum going but it didn't happen that way at this visit.  While I was at the office for almost an hour a good portion of that was pre-operative necessities such as filling out paperwork, photos and q&a time with the office nurse.  I spent about a quarter of that time with the doctor to discuss what conclusions I'd come to and any concerns that still lingered.
I've come to learn that a mastectomy isn't simply "a mastectomy", there are many different ways to approach the procedure.  I've also learned that reconstruction isn't simply "reconstruction" but there are many decisions to be made regarding the type of reconstruction with a number of possible outcomes.  If a patient chooses reconstruction that process is usually (not always) begun at the time of the mastectomy.  That is why I have met with two surgeons in the span of one week and two days.
For a woman faced with need for a mastectomy there are a number of decisions to be made:
First, will it be a single mastectomy or bilateral?  The answer to this will typically depend upon the risk involved in keeping the other breast in tact.  If there are genetic factors that heighten the risks, as is my case, then a bilateral mastectomy is typically recommended or chosen.
Secondly, will it be a nipple sparing or skin sparing (just what they sound like) mastectomy? This typically depends upon the patient's pre-operative size and shape.  Sometimes the type of cancer/tumor is a factor in this decision for doctor and patient. 
Third, with or without reconstruction?  This, as I've already explained, is a complex question.  It's been a very difficult decision for me to make, and even though I've made a decision, I feel like I haven't really made a decision.  For me, at my age and activity level, reconstruction is a given.  There are many women who have chosen the mastectomy without reconstruction who utilize prosthetic bras and are content with their decision.  That was something I could not fathom for myself.
So, reconstruction it is.
At my last visit with my plastic surgeon I was dealt a devastating blow.  I touched on this in my "I Have to Tell it Like a Story" post.  When I was told, way back in March, that a mastectomy was my best option to deal with my cancer and given the risk factors involved, I spent much time talking myself into the idea.  I read and re-read about the different types of surgeries, including reconstruction.  I asked questions, and read some more.  I looked at pictures and read and prayed for peace.  I finally settled on bilateral mastectomy with DIEP flap reconstruction.  To put it very plainly, the reconstruction would be to take excess fat tissue from my abdomen and relocate it to build the breast mound on my chest.  This was a comfortable decision for me because I liked the idea of the reconstructed breast being from another part of my own body (no implant, prosthetics, etc).  It seemed the more natural choice.  The surgery, as it was explained to me, was not an easy one as not only fat tissue but also veins would need to be transplanted.  All in all the surgery would take about 10 hours.  I spent much time preparing myself for this and mentally/emotionally reached a place where I was peaceful with the choice.  At the end of June at my last appointment with the plastic surgeon, all of that changed.  Due to being unable to eat during chemotherapy I had lost all of that fat that was going to be transplanted and was no longer an eligible candidate for the DIEP flap reconstruction.  I couldn't discuss any other options at that time.  I was in tears and could not make myself stop crying.
It's been a month now.  It really only took about a weeks time for me to collect myself once again and consider my options, now limited, for reconstruction.  It came down to implants.  There are two types of implants, silicone or saline.  Not only that but the size, timing and placement of the implants are other factors to consider.  Some women are candidates for direct implant, meaning, at the time of the mastectomy implants are placed and there are no further surgeries required.  Other women have to take into consideration the effects of future radiation treatments on their skin, such as a tightening or toughening of the skin which can impact the size or type of implant they would receive.  In such cases reconstruction is often postponed but tissue expanders may be placed to stretch the skin as far as it can be stretched at time of surgery with the plan to expand more once radiation treatment has been completed.
Since I will not be having radiation I was hoping for a direct implant at time of mastectomy.  I am not a fan of surgery and have had many in my day.  If I could avoid one more, that's what I would do.  However, at my appointment friday when I brought up my wish for a direct implant I was told that would not be the best option for me.  Expanders that would be placed at the time of mastectomy then filled slowly over the course of the next few weeks after surgery, were the recommended course of action.  After the expanders are filled another surgery to place the implants would be performed.  The second surgery in the reconstruction process is just another step, two or more out-patient surgeries are required for detail work.  All in all this process spans over the course of about one year.  My thought/feeling of "I just want to have the surgery and be done with it" does not work in this scenario.
I've heard other women talk about their surgical decisions and they seem so confident in their decisions.  I don't feel confident at all as I've tried different decisions on for size.  I haven't found a decision that feels right just yet.  I know what I should do, or even must do, but something is nagging.  
Despite the nagging I am so thankful for kind and patient surgeons who take the time to answer my questions, allow me to get to know them a bit so that I feel more comfortable, and who are skilled at what they do.  I know I'm in good hands and in a good place in this process but I've come to realize a difficult truth: there are just no simple decisions here.  
So I will do what I've done all along and continue to seek the peace.  I'm near it, I know, but complicated decisions just take time. 

The "Power" in Empowerment

As I look ahead to surgery in the coming month or two there are two surgeons on my team.  Dr. Knaus, the Oncology surgeon who would perform the lumpectomy/mastectomy; and Dr. Pavone, the plastic surgeon who would perform reconstructive surgery.  Both men were referrals from The Block Center and both have proven to be wonderful.

Let me just say that when you're sitting in the exam room with a pink paper shirt on (a mini gown that opens in front and doesn't even cover your belly button) the last thing you want is for your doctor to come into the room and make you feel even more awkward.  And that is why I am so thankful for Dr. John Knaus.  The first time Pete and I met him, about 4 months ago, he was so very kind and thoughtful.  Pete and I sat and talked with him about my situation, of course, but then talked about our joys, families, activities and so on.  He shared about himself as well, his family and personal love of fishing.  At the end of our visit (it didn't feel like a "doctor appointment") he sent me off with his personal cell phone number and a kiss on the cheek.  Wednesday was no different.  Greeted with a firm handshake and a kiss on the cheek my heart swelled from the moment we said hello.  I had been nervous about this appointment but with that greeting all anxiety melted away.  

We caught up on life over the last 4 months, including the course of my chemotherapy treatments, his weight loss that I had remarked on, how my children were doing as well as to discuss specifics for my upcoming surgery.

As per my recollection, I had been directed by every oncology surgeon I'd spoken with, toward a bilateral mastectomy.  The reconstruction part was always up to me, however the mastectomy part seemed like a given as far as any health care practitioner I'd talked to was concerned.  Believing that I had no options in this matter left me feeling depressed and forced into something with which I wasn't completely comfortable.  

"What have you decided?" he asked me.

I confess I couldn't speak for a moment, I was so taken aback by the question.

As he waited for me to reply, I explained to him that I had been under the impression that I didn't have a choice or decision to make.  That I HAD to have a mastectomy.  He kindly and calmly explained that I do have options and he laid them out for me: 

1. Lumpectomy with close monitoring due to the risk of recurrence.

2. Unilateral mastectomy with or without reconstruction with close monitoring.

or 3. Bilateral mastectomy with or without reconstruction and moderate monitoring as this procedure would provide a 98% chance of "cure".  (Cure is in quotations because there is no defined cure for cancer.  A person who has survived a cancer diagnosis by 5 years is considered "cured", however, all treatment for cancer is experimental.  I feel it's very important to clarify this.)

Dr. Knaus assured me whatever I decide to do he will work with me.  If I choose to act conservatively  with #s 1 or 2, he explained I would be watched carefully.  He further explained that if I wish to distance myself from the medical community and to carry on with life, then the most aggressive approach, a bilateral mastectomy, would be best.

For the remainder of the appointment he took time to answer my questions as I sought more specific details regarding incisions and scarring, length of surgery and recovery and anything else I could think to ask him about.  He provided the facts and was honest in giving his opinion when it was solicited.  It was an open and honest conversation.  He made eye contact with me, called me by name and waited patiently for me to answer his questions.

Leaving the exam room I noticed how light I felt.  I definitely felt better leaving his office than I had coming in.  I made it a point to tell the office staff how much I appreciated their kindness, as well as that of their boss.  It makes all the difference in the world to have kind people to work with when in the midst of a health crisis.

I went into my doctor's appointment on Wednesday railing against the idea of having to have at least a unilateral mastectomy and knowing most would advise bilateral given my genetic risk factors.  I left the doctor's office almost certain that I will be choosing a bilateral mastectomy given my genetic risk factors and feeling confident and good about the decision.  Dr. Knaus had given me my power back.  He handed me the reigns and told me to decide.  He gave me clear options and answered all my questions so that I would have all of the information I would need in order to make a decision.  In doing so, I was led right back to the recommended course of action.

Given all that I have learned about cancer, wellness and my body over the last several months I remain torn with this decision on some level.  Torn because I know there are no guarantees that I won't get cancer again whether I act aggressively or not.  Torn because I know that genetics are not a road map to the future and there is so much happening in the medical world toward treatment and prevention that it is incredible.  

At the end of the day, however, I will make a decision based on the treatment of the day and the information provided me; I will make a decision for my husband and my children, the choice that is likely to afford me the most time possible with them.

As I look ahead toward surgery in the next couple of months I'm so thankful for my team.  I am thankful for the doctors, nurse,  therapists, family and friends.  I am so very grateful to God for the way I have been led and cared for on this healing journey.  

Picture Everyone Bald

My hair is growing back.  It's salt and pepper in color and growing just around the rim of my head.  The top is still bald.  Perhaps the hair there is blond because it's very soft to the touch.  I'm believing for a full head of hair one day soon!

I'm feeling stronger the more I am able to eat.  Each day I have more energy to be active. Sometimes I overdo it and push myself beyond the limit, something I used to do before I was diagnosed (again) with cancer.  I wonder if pushing myself "beyond" and experiencing that stress and overwhelm is part of what provided an environment for cancer to return to my body in the first place.  

In my private practice I preach to my clients about setting boundaries, maintaining appropriate limits within relationships and with themselves.  These boundaries can mean learning to say no, or taking time for oneself, setting limits and putting a cap on time or emotion spent on someone else.  Life without limits can lead to overwhelm, exhaustion and bitterness. 

As my hair grows back and I have more energy I feel like I'm rediscovering myself.  While I feel renewed in some sense, I see much of the old ways coming back into play.  Pete is having to remind me once again to "stop doing things and just rest."  I've never been good at setting boundaries with myself in that way.  So now that I am returning to strength I am nervous; nervous that I won't remember the lessons learned and will just charge ahead with life at full speed.

I'm also unsettled about the way others will treat me.  It is simply amazing the amount of compassion and empathy that is poured out on a person who is ill.  As for me, the amount of support, love and prayers that have been lavished upon me is so meaningful and healing.  I appreciate it, I receive it with gratitude. 

Even people I don't know are so very kind to me when they see my bald head.  Because 9 times out of 10 we all know a person with a bald head is probably undergoing chemotherapy and/or radiation treatment for cancer.  Seeing a bald head is typically as signal that someone is sick and really going through a difficult time.  When I am a recipient of such directed kindness it causes me to wonder what will happen when my hair grows back.  What will happen when strangers can't see the difficult healing journey I am on because my head doesn't provide evidence of it?  Will I be an annoyance or simply just another stranger?

Because that's what strangers are to me sometimes.  I hate to admit it, but it's true.  I fail to remember that everyone has a story.  We are all on a journey of healing, healing from one thing or another.  The least we can do is remember that and to have patience with one another.

I was discussing these things and confessing my shortcoming to my mom the other day.  She suggested, somewhat jokingly, "Maybe we should picture everyone bald."

While we chuckled about it we also realized there was something to that.  The empathy that I tend to receive because of the obvious illustration of my journey should be the same empathy extended to all regardless of their appearance.  I would love to be that person full of grace and compassion.  I can be that person at times, but when I am in a hurry and the line is long, I lose all sense of empathy.

This is abundantly clear to me: I do not want to return to the harried, hurried and harsh person that I can become when I am lacking boundaries; failing to protect myself from overworking and overachieving.  Learning to set clear boundaries with myself may be one of the major lessons I will learn during this time.  To preserve the level of self-care that I have implemented since my most recent cancer diagnosis is paramount.  That will involve reserving time for myself and my family; to limit the expectations I put upon myself to "do".  I can see clearly that when I am moving at a measured pace, fully present in the moment, I am a better wife, mother, friend and a more empathic stranger.  

So as I continue the process of learning to set healthy boundaries for my own wellbeing, I will also picture everyone bald.  Because we all have a story and I truly desire to treat others the way I have been treated throughout this cancer story.  

Me, Being Real (take 2)

I'm so upset right now I can't stand it.  I'm so angry I could punch a wall and so disappointed that I'm crying my eyes out.  I just spent a couple hours on a post that spoke my heart, was encouraging for me to process through and I was excited about sharing and I. LOST. IT.
These are the bits and pieces I can remember at 1 o'clock in the morning, mad as hell...or just sad.  I share them with you now just feeling at a loss:



Full disclosure: I'm jealous of healthy people.  And even more than that, I find myself imagining what it might be like to BE them.  If I see a beautiful, strong woman I think about what it must be like to be her: to have legs that can run, hair down my back and whole, healthy breasts.  I daydream about feeling confident, secure and sexy.
But I know that woman I am looking at doesn't have it "all" the way it appears.  In any given moment I too can be all of those things I wish to be and others may look at me with envy.  

My children laugh or call my name.  This is my beautiful reality.  I want to be here with them each moment.  When I look at them, touch them, speak to them I think about their father.  Our union brought them into being.  Our life together created these 4 beautiful creatures and I can't imagine anything else.  

Nine years of marriage to Pete has seemed longer and shorter.  These years have been filled with joy and laughter.  We are really going through it here and even in the times we are both difficult to be around I wouldn't want anything or anyone else.  At the end of the day there are kisses, hugs and prayers.  We hold each other tight and trust God for sleep and another sunrise.

But life is inconstant, isn't it?  That's what makes each moment so precious.

On my Facebook page I often share quotes from Henri Nouwen.  I often find his words to be wise, inspiring and even life changing.  I like this one because it highlights the importance of our vulnerabilities:  "If I am able to remember loneliness during joy, I might be able in the future to remember joy during loneliness and so be stronger to face it and help others face it." -Henri Nouwen
That is why I write.  To bring encouragement to myself through full exploration of the pleasure and the pain of life.  And to help others face their vulnerabilities and to celebrate with them in their victories.

In our vulnerability we become open to receive the gifts that others have to give that we may otherwise have denied because we believed we didn't "need" them.  As my mother used to tell me, you're robbing them of a blessing when you refuse the gifts they have to give.

I'd rather be out on a limb with Pete, Bobby, Teddy, Sam and Will than to be firmly planted on the ground without them.

I don't want to be anyone or anywhere else.  Truly.  Even in the midst of mental, emotional, physical and financial depletion I want to experience my whole life with all of my senses, with all of my being. 



As I finish patching together what I can remember of what I wrote the last couple of hours all I can do is shake my head.  It makes me so sad.  I don't know why I can't let it go.  I just want to convey my thoughts, feelings and experience in an eloquent and encouraging manner (and I DID before I LOST IT!)  You guys, I'm a mess inside. 

I know I'll be alright.  I know that God is my refuge and my strength so I won't be defeated.  I know I have love, support and prayers of family and friends all over this world...but I. am. a. mess.  That's just how it is.  No way around it, only through.

I feel like I'm an icicle on black top, high noon in mid July=cannot keep it together.  And that's me, being real.

I Have to Tell it Like a Story

I have to tell this like a story, it's easier for me to relate the details without getting overly emotional...

July 10, 2015
"It's getting tougher," I told Pete through my tears and from the crook of his neck where I had hidden my face.
We stood in the middle of the exam room where the surgeon had just left us.  Today was the day I had hoped to be scheduling my surgery and to have a clear plan to end this cancer treatment.  But that was not to be.  These two days in Skokie, which I had anticipated would be light and easy were by no means either.
Thursday was IV Vitamin C at The Block Center.  I was supposed to be receiving Herceptin (a Her2 blocker) by IV and was to receive it once every three weeks for the next year.  However because of a lowered ejection fraction and some symptoms involving my heart (as explained in my post "The Other Side of Struggle") it is being withheld.  The doctors want to see if my heart recovers after taking a break from the drug.  I had a repeat echocardiogram on Monday and we will wait for the results of that test before resuming the treatment.
In the meantime I received a vitamin cocktail by IV.  While at The Center I also met with Dr. Block and Dr. Kahn, my oncologist.  Before my last chemo treatment Dr. Kahn had reduced the dose of my chemo by 50% and said that if this reduction did not reduce or resolve my side effects that this could be my last/final treatment.  After experiencing all of the same side effects along with the recurrence of another issue I had thought had resolved.  I assumed I was done with chemo in this case.  Yesterday when I met with Dr. Block and Dr. Kahn they both implored me to have the 6th treatment as prescribed.  They asked me to at least consider it.  I agreed that I would.  Through tears and with a cracking voice I expressed my concerns about all the side effects as well as my uneasiness regarding the toxicity of adding yet another chemo treatment to an already weakened heart and body.
Dr. Block laid out fair and substantiated arguments for the 6th treatment based on the information he has available to him.  He addressed my concerns and stated that ultimately the decision was mine and he would continue to help me either way.  He is intelligent and kind, and I am thankful to have him on my team.
I struggled to relax as we left The Center that night.  Pete reminded that a decision does not need to be made immediately.  I should take the time to relax, pray and seek peace, he encouraged.  Every day this man reminds me of his unconditional love and support.  Pete is amazing and so patient with me.  I'm so blessed by this man.
I woke up this morning after a typically restless night.  I successfully slept four hours at the outset of the night, woke up and had trouble getting back to sleep, finally to enjoy two full hours of sleep just before having to get up.  I awoke with a smile, climbed out of bed and thought out loud, "This is going to be a great day!"  The weather matched my mood: sunny, bright, warm and pleasantly breezy.
We made it to the doctor's office early and were seen on time.  It was perfect.
Once the doctor examined me the visit went down hill.  Here's the long and short of it: the type of reconstruction surgery I had wanted to have is no longer a viable option for me because of my weight loss due to chemo.  This news was devastating.  Since my first appointment with the surgeon three months ago I had been talking myself into a surgery that I felt was the lesser of the evils.  At this moment I was being forced to rethink everything I had been considering and planning for.

At this point I haven't come to any conclusions.  These decisions are weighing heavily on me.  I feel very responsible.  Responsible to do what is best not only for myself but for my husband and children.   I'm trying to rest and not rush, to seek peace in my decision-making.  While I feel overwhelmed and wish I had a lighted path before me, I am clear on two things.  One, there are no guarantees whatever I choose.  And two, regardless of any decision I might make I am not the one ultimately in control here.  We might like to think that we have control but truly the only thing we have control over is our response to whatever and whomever comes to us in life.  
As we drove home from Skokie a song came into my head and I began to sing words that brought comfort in the midst of the emotional storm.  "I lift my eyes up unto the mountains-where does my help come from?  My help comes from You, Maker of heaven, Creator of the earth." (Psalm 121:1-2)
I accept this comfort and I continue to seek peace.

I Wish it Was Always Summer in Northern Michigan

July 4, 2015
We are wrapping up our family vacation here in beautiful Cheboygan, Michigan.  This is where I grew up and where my parents still reside.  Northern Michigan is paradise in summertime!
Five years ago all three of my siblings and I, along with our families, were together at my parent's home for the summer holiday.  We determined then that we would do our very best to make the 4th of July an annual event.  Having all four Fenlon kids together in the same place at the same time was such a significant event (it had been YEARS) that we all expressed the desire to make this a tradition.
Unfortunately, time, money, work schedules and distance make this difficult.  While my family and I have been able to manage to make it up 4 years out of the last 5 my other siblings have had a more difficult time making the trip back.
We truly enjoy spending time with my parents, Aunt Betty, Emillie and the Kwiatkowski gang, and any other family or friends we are able to connect with while we are there.  There's nothing like quality time with family and there's nothing like summer in Northern Michigan.
The weather here is warm but mild.  In Illinois where we live it seems it is either hot or cold, summer or winter.  We are either running the air conditioning or the heater.  Somehow the milder, transitional seasons of spring and fall have been cut out altogether.  Not in Northern Michigan.
The colors still show themselves, bold and rich, on the leaves of the trees for weeks at a time beginning late September and lasting sometimes into November.  The air turns crisp and cool, football weather, we call it.  An in my hometown of Cheboygan, Michigan, there's nothing bigger than football.
The winters are long, cold and precipitous.  There is always lot of white, lovely snow.  It doesn't turn brown or dingy the way snow in the city does.  It remains clear and pristine.  This could be due to the consistently fresh layer that falls almost daily.  The lakes freeze over fairly early providing even more space for winter sports and adventure.  Snowmobiling, ice fishing and cross country skiing are big in these parts.
After many months of this wonderland of ice and snow, the season gives way to spring.  Ah, Spring, wet and wonderful!  The snow slowly melts leaving puddles in driveways and yards.  Winter coats are exchanged for spring jackets.  Umbrellas are pulled out of the closet and put to good use.  The sun shows itself more and more throughout Springtime.  The ground begins to warm and brilliant green buds surface as a result.  It is a lovely time of year.
But my favorite time of year in Northern Michigan is Summertime.  The plentiful waterways come alive with boats, jet skis, rafts and swimmers.  People you haven't seen all winter either return to the area or are now venturing out of doors.  The mornings and evenings are cool inviting activity and exercise.  The days are warm, thanks to an amazing sun who shows itself more frequently and whose rays and warmth are actually felt.  There is usually a sweet lake effect breeze that sweeps through town.  Where my parents live 5 miles out the air is often still which makes the warmth of the sun even more substantial and effective.  I love it.
The green grass of the yard; the tall grass, wildflowers and weeds of the meadow behind the house, the trees of the forest that surrounding there home; the isolation I despised as a teenager now comforts me in adulthood.  I love it.
This July 4 was one such idyllic summer day.  As we sat in front of the church my parents pastor on Main Street I thought about how much I truly love this town and those who live here.  The 4th of July parade participants marched along in front of me.  My youngest child, William, sat on my lap.  And as the bagpipes from Sault Ste. Marie, Ontario, Canada came along, tears were streaming down my cheeks.
I visited my mom's naturopath last week.  She did some talking with me and testing and found that my hormones are out of wack.  "You get upset over the littlest things, don't you?" she asked.  I confirmed this.
She also found that only about 2% of my sleep is deep, reparative REM sleep.  "You must be exhausted!" she empathized.  Again, I was able to confirm this and told her of my irregular sleep patterns.  All in all the visit served to confirm some things I already knew, prove to me I'm not just overly emotional or crazy, to highlight some issues I wasn't aware of and ways to address all of the above.  
So as I sat at the 4th of July parade with tears in my eyes I opened my heart to the bittersweet moment.  "If only I could save time, make a moment last longer than just 'a moment'," I thought.  And with that, the bagpipers had moved on and the race car displayed on the tow truck came along with radio blaring.  My idyllic moment had passed.
As the truck and race car with loud music approached William began to bounce on my lap in rhythm to the music.  I wiped away my tears as I began to laugh with joys the child in my lap showed his enjoyment and contentment in THIS moment.
I realize each moment holds something special for us; gifts wrapped in varied packages.  I don't want to throw away a gift before unwrapping it just because I don't care for the packaging!
Summer in Northern Michigan is fantastic and in some ways I truly wish it could always be summertime there.  But I wouldn't want to forfeit the beauty that comes with the fall, winter and spring in order to maintain summer.  I want all creation has to give and to experience each moment of life open to what it holds.

More Than Sufficient

Let nothing disturb thee

Let nothing dismay thee

All things pass

God never changes

Patience attains 

All it strives for

(S)he who has God

Lacks nothing

God alone suffices.

-St. Teresa of Avila

I love this prayer. I think it's beautiful. That last word, however, leaves me feeling unsatisfied every time. Because this God, my God, MORE than suffices. "Suffice" by definition means to meet or satisfy a need; to be competent or capable. This is a good thing, great even. I find the word "lavish", meaning to give in great amounts without limit. I find this word to be more fitting because in my life, no matter what, God has proven to be faithful, His provision and grace more than sufficient. He lavishes His love on me and has throughout my life (I John 3:1). All that has been required of me is to be open to growth and patient within the process of change. (NOT easy!)  While I work toward a positive attitude in this, it doesn't always come easy. There are plenty of times where I'm disappointed at my lack of patience. The process can be so challenging and those nearest and dearest to me are the ones who suffer. If I don't feel well or am discouraged, they know it. Despite my behavior they have been supportive and patient with me. This most recent cancer diagnosis and treatment has been a growing experience to be sure. But growing always comes with some amount of pain, doesn't it?

2 Corinthians 9:8 "And God is able to provide you with every blessing in abundance, so that by always having enough of everything, you may share abundantly in every good work."

This passage is particularly beautiful to me. It reminds me that in the midst of the most trying times, of brokenness or pain, when I feel as if I have nothing to give, God's blessings to me are abundant and I will always have more than I need so I can share the goodness. I choose not to live my life with the mindset of poverty or as a victim but rather with a mindset of abundance and blessing. While I know my body's tendency toward anxiety and sensitivity toward stress, my spirit and my mind are set on the goodness of God. Not just today when I am starting to feel strong again, but every day. There is more to life than the moment, but I want to live each moment purposefully. I remain open to the lessons of growth and pain. I receive the blessings from a good God. I share goodness with those around me. After all: "She who has God lacks nothing. God alone [lavishes]".

The Other Side of Struggle (Not Beyond it)

I'm done with chemo.  The oncologist and I spoke before my last treatment and due to my somewhat extreme and adverse side effects he reduced my dose by 50% total last week.  He said if the side effects were the same, though he was convinced I wouldn't feel them at all this time, then I would just be done.  The side effects were the same and I even had a side effect that had disappeared return.  I am done with chemo.
It has been a bit anti-climatic I must admit.  There is a sense that something is still hanging over my head.  The plan at this point is to continue with Herceptin (a Her2 blocker drug) once every three weeks for the next year.  This will be done through IV at The Block Center.  I want to go there so I can also receive my IV Vitamin C.  The problem with this plan, however, is the condition of my heart.  I had an echo done before my last treatment and found that my ejection fraction was diminished by 20%.  Ejection fraction is the measurement of how much blood the left ventricle of  the heart is pumping with each contraction.  A normal ejection fraction is somewhere between 55 and 70.  Mine is 40.  I looked that up on the American Heart Association website: http://www.heart.org
It says, and I quote, "An ejection fraction between 40 and 55 indicates damage, perhaps from a previous heart attack, but it may not indicate heart failure."  May not indicate heart failure.  Oh good.
The decrease in my heart function is attributed to the Herceptin.  I was not given Herceptin at my last treatment due to the results of this echo.  The doctors I spoke with seemed confident that withholding this dose will allow my heart to bounce back and they expect to see an improvement in my ejection fraction next week when I have the echo repeated.
Of course I am concerned for my heart, which has already taken on a lot of hard-hitting drugs in it's day.  I had a lifetime dose of a chemotherapy drug called Adriamyacin in 1991-92 which is also known to damage heart function and was found to indeed have damaged mine.
Going forward I still have some very weighty decisions to make.  I am concerned about the health and function of my heart.  I also want to be sure I am doing what is necessary to deal with the cancer that is Her2 positive and the only reason I would be taking Herceptin in the first place.

I went to a gentle yoga class on Wednesday morning.  I've been wanting to go and since the boys are with their Mimi and Papa I took advantage of the opportunity.  It was a quiet, soft, slow-paced class.  Perfect for my needs.  Throughout our time together we practiced ujayi (a form of deep breathing, in and out of the nose).  I teach deep breathing to my clients and use a different style, breathing in through the nose and exhaling through the mouth.  I found ujayi to be very challenging.  I kept wanting to open my mouth, especially since with the exhale we were instructed to make a soft noise that only we could hear.  With each exhale I was working to keep my mouth shut and also to coordinate making a noise at the same time.  Well, the noise in my ears sounded like panting or choking or at the very least something very uncomfortable.  I was struggling.  Then the instructor said, "The only rule is not to struggle.  No struggling here.  Just do what you are able."
I felt freed, released to not breath right, if that's what I was doing.  With the next exhale the sound in my head was no longer a choke but instead like a gentle whisper or soft breeze.  My pauses in between each breath were not forced or held tightly, they were simple and gentle pauses.  This deep breathing practice that I've taught for years took on new life and meaning for me in that moment.

Since then I have reflected on the transition and recognized that once I let go of struggling, once I set myself free from the expectations of doing it "right" I easily entered into a relaxed state where that style of breathing seemed natural to me.  This led me to wonder more about the concept of struggle and to consider what else I might keep myself from.
I listened to an interview with Mary O'Malley, author of the book "What's in the Way IS the Way".  I haven't read the book yet but I enjoyed the interview and her gentle perspective on life.  She talked about the fact that there will always be struggle.  Life is like the yin/yang, a dance of light and dark.  But if we incorporate and include all of our experiences in life and stop trying to "rid" ourselves of what is uncomfortable or undesirable then we move toward healing.
Graham Cooke, a Vineyard pastor from the UK, has a two-part YouTube series called "The Art of Thinking Brilliantly" https://youtu.be/sYlpHy3Pvl0 in which he also addresses adversity, trial and struggle in life.  He poses these questions: What if every trial we face is meant to advance us, to grow us?  What if struggle is meant to bring us closer to and make us more aware of the goodness of God?
As I considered all that I had been experiencing and posed these questions to myself I came to this conclusion.  To me there is another side to struggle that has nothing to do with discomfort or pain.  To me the other side of struggle IS the goodness of God, the light in the dark, wisdom gained in the midst of chaos or adversity.  So while I face more difficult decisions I rest in the fact that I am not confronting a foe but instead I am approaching the Throne of Grace and ultimate Goodness.  I am not entering a battle but am dancing in the light.  I can rest in the fact that no matter the circumstance I will grow here. 

Thoughts on Being

Before being diagnosed with cancer (the second time) I found that my life was very overwhelming.   Being the wife/mom in a family of 6 holds a lot of demands on time and energy.  Beyond that I also realized that I was putting a lot of demands on myself.  I had very high, often unrealistic expectations of myself to "do it all" and to always be "better".  One can only keep a perfectionistic pace for so long before the mind, body, spirit or all of the above begin to whisper messages to "slow it down" or "take care of me".  If you don't listen to the whispers then there will be consequences.
Somewhere along the way I did hear the whispers but wasn't sure about how to heed them. In June of last year I started working with an amazing nutritionist in my area, Kelli Bonomo.  I knew that for the sake of my blood sugar levels (I was diagnosed with diabetes in 2001 and had never worked with a nutritionist) and my body's wellbeing that this was a very important step.  Working with Kelli for over 6 months really helped me to learn to balance what was on my plate, to learn to fuel my body effectively and to care for it with food.
Through conversations with Kelli and in personal quiet time that I was learning to carve out for myself, I began to realize and contemplate other areas of my life that required attention such as the pressure I was putting on myself and what that was doing to my emotional and spiritual self.  During this time of reflection I realized how caught up I was with "doing" and rarely let myself simply "be".  It was at that point I began to allow myself to be, letting go of the expectations for doing.
The following is the result of this personal discovery:

BE

Grateful

What am I thankful for?

Active

What is my favorite form of movement?

Creative

How do I express myself most positively?

Well-Fed

What are my favorite healthy foods?

Positive

What are my strengths?

Spiritual

How do I pray, meditate, relax?

Restful

How is my quiet time and sleep?

Supportive

Gifts are for giving.

I asked myself these questions over the course of time to consider where I was at with each area of my life.  In acknowledging my state of being I was able to allow what was true of me and my person to come forward.  I didn't have to strive or struggle to change, be better or do more, I simply had to BE; to be genuine and true to who I already was.  I also realized that while there are external demands that others would put upon me coupled with those I put upon myself, but the truth of that matter was giving is an organic part of being as well.  We are each gifted in unique ways.  So I realized if I allowed myself to be who I was designed to be then giving of myself (in the ways that only I can) is simply a natural expression of my being.

This paradigm shift was an amazing part of my growth in the last year.  I revisit it now in the midst of  a situation that could be a war/struggle/fight if I chose to approach it that way.  But as I've said before, I choose to float not fight with this cancer.  I choose to BE.

Something as Simple as Food

I have been struggling lately.  It's not a new issue but it has gotten worse as treatments have worn on. I can't eat.  Or, I can eat but I have to force myself for the most part.  Food tastes horrible.  The chemotherapy has messed up my taste buds and taints the flavor of almost any food I try to eat and I try many different things in hope of finding something that will agree with me.  
Those closest to me know what a mental challenge this is.  It actually causes mental anguish, I would say, at times.  Most everything sounds good, looks good and smells good.  The other day I was craving pizza so much.  I had thought about it all day.  My husband suggested that we order a pizza so I could just give it a try.  When the pizza arrived I smelled it, looked at it then just put my hands on the box and sobbed.  
"I just want it to taste right," I cried, "I just want it to be good."
It wasn't good.  But I was able to eat about 5 bites before my gag reflex kicked in to remind me that I wasn't in total control.
I really think that was a turning point for me.  A point when I realized or decided that this just wasn't right.  How can it be a good thing for a person to be unable to help themselves in the most basic way, by eating.  It has been some time since I've had a fully nourishing meal.  Drinking protein shakes which include my supplements only takes me so far.  My stomach feels hungry most of the time and I am unable to feed it.  
Yesterday showed some improvement.  Today was even better.  I know each day will be better than the last.  In the meantime I've been losing weight.  With so little fat and so little nourishment I wonder how much of my supplements are even being absorbed in my system.

I just finished listening to the book Radical Remission on audiobook and loved it.  I would recommend it to anyone and everyone for the sake of their health, wellbeing, and balance.  It was such an encouraging piece of work for me to read/hear during such a difficult time.  The book provides testimonies of many different cancer survivors and their healing journeys.  Some went through traditional cancer treatment, others found healing by other means.  The author, Dr. Kelly Turner, outlines the 9 things each cancer survivor that she interviewed or who shared their story on her website www.radicalremission.com, had in common.  They include: Radically Changing Your Diet, Taking Control of Your Health, Following Your Intuition, Using Herbs and Supplements, Releasing Suppressed Emotions, Increasing Positive Emotions, Embracing Social Supports, Deepening Spiritual Connection, Having Strong Reasons for Living.  

Before chemo started in March I had already radically changed my diet.  I was eating a mostly vegan diet with the occasional exception.  I had seen the benefits of this in my energy level and moderate weight loss.  It felt good to know I was doing something healthy for my body.  Since being on chemo I have been unable to follow that diet due to the taste buds and gag reflex.  What little I can eat has been off plan.  At this point, however, the goal is simply to eat.

Another step I had already taken toward health and balance was the use of supplements.  The Block Center increased the number of supplements I take when I began treatment.  That has been a difficult thing for me to maintain as well due to the gag reflex.  As many of my supplements as possible were changed to capsules so I could pour the powder out of the capsule into my protein shake as it has been very difficult for me to take pills lately.
I believe we all have to continue work for emotionally wellness.  The decision to release suppressed emotions and increase the positive is a daily one.  

My social support network has been AMAZING from the first day.  I'm often overwhelmed by the love and kindness of the people at my church, those I work with, friends, family and even strangers.  I am not adverse to speaking up when I need something.  I know there is a blessing in giving as well as receiving and I feel truly blessed.  I tell people I feel carried by the prayers of those who are faithfully praying for me.  It's tangible and I'm amazed by it.  I know my social support system is an important part of my healing.

I have always had a deep faith.  I can see how each step of this life leads me to learn more and more.  Every situation builds on my faith and my relationship with God.  It's this connection that fuels me. 

Having Strong Reasons for Living...their names are Bobby, Teddy, Sam, William and Pete.  My loves and my life. 

Taking Control of Your Health and Following Your Intuition were very important chapters for me.  I said earlier that crying over that box of pizza was a turning point for me.  In that moment I realized how desperate I had become and how out of control I truly feel.  Those two important chapters provided such a level of encouragement for me in the midst of deep frustration and sadness.  They empowered me by reminding me that I have a voice and the inner sense (intuition) as to how best to care for myself.

Starting with lack of food and ending with page 290 of Radical Remission, I have been on quite a journey of desperation and self-discovery that I will be sharing more about in future posts.  For now I will say that I feel I am healing from the inside out.  I was reminded tonight in 2 Corinthians 5:17 "Therefore if anyone is in Christ the new creation has come, the old has gone..."  Every issue in my life is in Christ because I am.  This is good news, as I certainly cannot handle this latest challenge on my own!  So I will continue to seek Him in the midst of this situation.  I will ask for His wisdom and guidance in this healing process and choose to believe that very soon I will be able to enjoy even something as simple as food.