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.