Tag: chemo

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Waiting, worry and Lost!

“Your scan looks beautiful,” said Dr. Tsung, my youngish, kind, tall surgeon.

It’s like letting the air out of a balloon – the pressure relieved by good news.  No new tumors.  Thank you, God.  Thank you.

I’ve been in this position so many times.  The one where you wait for a doctor to give you news that will drastically alter the trajectory of your life.  Those moments are so full and frightening and taxing and stressful.  I’ve had to wait hours, days, and even over a week for results.  By no means do I have this down, because this sort of thing is always going to be hard.  But here are some things I have learned along the way.  Perhaps it will help you the next time you face the uphill battle of waiting for important news.

First of all, you really do have to begin with what you believe.  If you believe in nothing, that’s entirely up to you, and you can move forward doing basically whatever makes you feel better.  Some things to consider: some people like being alone, and others prefer to be surrounded by a support network.  Wherever you fall on the introvert/extrovert spectrum, pay attention to your wants and needs and try to adjust your social schedule accordingly.  An introvert does not benefit from constant companionship and an extrovert will quickly become depressed if left alone for too long.  When we’re out of our element for any length of time, it stresses us and more stress is not what is needed in times of worry.  I would also recommend engaging in activities you find to be energizing or calming such as exercise or an activity you enjoy.  It’s also good to keep a normal routine – you can’t and probably shouldn’t take a few days off work and sit home and worry.  Some of my best work has been done when I’ve pushed my upcoming doc appointment out of my mind and focused on something totally unrelated.  Keep your mind occupied by work or mindless tv.  Not a bad time to binge on Lost episodes if you were living under a rock circa 2006. I’m not even joking.  Good, well written tv shows have basically gotten me through cancer.  Ok, more so God, my friends and family have gotten me through cancer, but Scandal and Revenge have helped me forget about cancer for a while.  Just turning your mind off can be helpful.  This strategy immediately gets derailed when there is a cancer story line added (assuming a cancer diagnosis is what you’re waiting to hear about.)  In which case, you can skip that episode or…just watch Lost, ok?  No cancer scares on the island from what I recall.

If you’re not sure what you believe, it’s not a bad time to think about it.  Have you wondered about heaven and hell and God and what happens when you die?  Of course you have.  But, like many people, you’re jaded by organized religion (Understandably!  Some real idiots out there in the name of various religions, eh?)  and/or you haven’t landed on anything that fully makes sense to you.  I encourage you to pick something and learn about it.  Just start seeking for spiritual meaning and ruling things out.  I can pretty much guarantee you will find yourself down a rabbit hole of interesting ideas and philosophies.  My own journey led me from kind of half heartedly hoping that reincarnation is real and that I could come back as something that flies if I behaved myself, to believing that Jesus is the real deal.  It just made sense to me, eventually, that God is perfect, we sin against Him (we do…all of us) and there needs to be a sacrifice to pay for those sins, and Jesus is that sacrifice – God’s son.  He sacrificed the most valuable thing ever, to demonstrate His love for us.  Now, because I believe that is true for all of us, not just “my truth” or “true for me”, I hope you will discover that, too.  But I sincerely think that simply taking the step of exploring whatever intrigues you will lead you closer to the truth – whatever the truth of this astonishing miracle of a universe we live in is.  Taking an honest step toward discovering what all of this is and how we got here and what we’re meant to do – it’s always a step in the right direction.  Seek and you shall find.

Now, for those who consider themselves to be Christians.  Coming from the perspective of a Christian worldview, there are certain Biblical ideas and instructions that are very helpful to one experiencing great worry.  The first is that God commands us not to worry.  Isn’t that interesting?!  I have thought about this a lot, because I find it to be such a loving instruction to us as His children.  If you are a parent and you think about your child, and you imagine your child worrying, it’s heartbreaking, right?  I remember my mom asking me what I worried about once when I was about 9 or 10 years old.  I told her, and I recall this very clearly, that I worry that the United States will go to war and my dad would have to go to fight.  I regularly worried about this.  Having been born in 1978 and having several family members who fought in wars, I heard enough references to war to know that it was very, very bad.  I often worried when I saw the news and heard about various tensions throughout the world, it being the cold war and all,  When I expressed this worry, my mom laughed and told me that my dad was too old to be sent to war.  I was immediately relieved.  I am sure if my mom could have read my mind and saw that I was harboring that worry for years, that she would have alleviated it immediately, as she did that day.

I imagine God is troubled when we worry, partly because we spend time worrying that we could be spending doing about 10,000 more productive things, but also because He loves us and doesn’t want us to live in those confusing emotions.  He also wants us to trust Him.  We might talk about God and go to church and express a belief in Him of some sort.  But do we really trust Him?  The rubber definitely meets the road with faith when you’re sitting in a doctor’s office, waiting for the doctor to come in and point you down one of two roads – one, that you really don’t want to go down.

Being through what I’ve been through – Two cancer diagnoses, multiple surgeries, two chemo protocols, dozens of side effects – I have a lot of experience in that waiting room.  And my time with God, in those moments has changed.  I used to think just “no please, no, let it not be cancer, no, please, no, let it be ok.”  While a part of me still thinks that way, there is another, emerging part of me, that is calm, willing to hear whatever the news is, willing to go down whatever path is the one God leads me down.  I am increasingly challenged to believe in God’s goodness.  I am still tempted to believe that bad news means that God is not real, or if He is real, He’s not good and He does not love me.  The deeply flawed, human side of my heart and brain turn so quickly from God when He does not act as I would have Him act.  That hurts to write that sentence because it reflects such arrogance and short sightedness.  We can believe that this being created this entire earth – He invented water, and fire and jellyfish and geysers and the Northern Lights and our incredibly intricate nervous systems.  We can believe that, but not that He’s in control, that He will facilitate our lives in a way that is ultimately for our good?  Sometimes, believing in God seems a little crazy.  And I get why people think it is.  But from a logical perspective, it’s actually crazier to kind of vaguely believe in Him but not trust Him with these difficult things.

We do this, because we’ve probably felt betrayed by God at some point.  We lost someone that we loved, usually.  That is usually the thing that pushes people to the point of refusal to believe that God could possibly be good, when such a wretched loss has occurred.  Our hearts are so beautifully designed to love and engage with others, that a loss of love – by death or abandonment – changes us, searches in a rage for someone to blame, shuts off our willingness to trust this being in the sky we call God.  But I know people who have experienced unspeakable loss – second trimester pregnancies ending suddenly, car accidents taking away fathers, cancer stealing yet another young life, blindsided by an affair and demand for divorce – and some of these people have the toughest, most serious faith I’ve ever seen.  Because they’ve been through the wringer, and they didn’t let go of God’s strong hand.

So, at some point along the way here, I decided, years ago, that I was all in, as far as God goes.  So, when I sit there, waiting, I remind myself of all the good in my life, the history of God’s faithfulness, the truth that He has brought me safe thus far, as that old hymn reminds us, and He will lead me home, as He sees fit.  This is the only way I know.  It’s not an easy way, but I believe it is the best, truest, most sensible way.  I was willing to hear bad news on Friday, when I went to see Dr. Tsung.  I was willing to hear that things were not going well.  I had high hopes, of course.  But I was willing to hear what I didn’t want to hear.  I was willing to let go of my timeline of chemo and my deep desire to “get back to my life.”  I was willing to accept that I might not be able to go ahead with plans I have for once all of this chemo is over.  I plan to run in a relay in the Pittsburgh Marathon, I am toying with the idea of doing another triathlon.  I want to go on a short missions trip.  I am planning my 10th anniversary trip.  I want to visit friends I haven’t seen in a while.  I plan to orchestrate a huge capital campaign to build new and better facilities for the organization I serve.  I want to redo the retaining wall and landscape that part of my front yard.  I wrote a book and now need to get it published.  I have plans, yo!!

But I sat in the doctor’s office and offered up my plans and hopes, while I waited.  Not my will, but yours, be done.

The nurse took my blood pressure while we waited.  I typically run at a 120/80 and in times of anxiety, more like 140/90.   My blood pressure was 100/62.  I actually laughed out loud.  I silently gave God a high five, thinking “Wow, I’ve come a long way!”  I was in awe that I was actually that calm – that it wasn’t just an act, that I honestly wasn’t being ruled by my anxiety.  It was physiological evidence to me that I was really doing it – really trusting God.

The clear scan, to me, was just the icing on the cake.  The cake (I don’t like this whole metaphor because clearly the icing is the best part of cake) was that I could actually trust that, no matter what the doctor said, God’s got me, and He’s in complete control.  Had the news been different, yes, I would have been deeply disappointed and probably a little scared.  But I know that I am able to recover from those difficult emotions, release my plans and lean into trusting God.  I pray with everything in me that I never have to fight cancer again, once we are done with these chemo treatments – they are pretty terrible.  The idea of going through all of this again just sends a chill through me.

But, whatever God sees fit for me…I’m in.

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The best Weekend EVER.

What a weekend!

I had chemo yesterday and I am not feeling great.  But I have this past weekend to look back on to warm my heart.

Seven years ago, I was pregnant with Cassidy and stumbled across a web site called Babycenter.com  It is basically a site where you can go to get information about being pregnant and being a new mom.  You can create a profile and put a photo and some information about yourself like if it’s your first pregnancy, etc.  Then you can go into the “Community” part of the web site to interact with others who are pregnant.  You can join a “birth board” which is a group of women who are all pregnant and due the same month as you.  There are thousands of women on each birth board, and you can get kind of addicted, interacting, talking, arguing about breast feeding in public and elective c-sections.  Things can get dramatic and heated and it is in these threads that you find “your people.”  The women you connect with.  In my case, I seemed to gravitate toward funny, outspoken but sensible people.  Both the kind who were in the midst of the drama at times, and the ones who broke into those conversations with well timed senses of humor.

From those connecting moments, you got to know “your people” and would have private conversations through chat functions, and if you were lucky, like me, you got invited to private groups.  This is where the magic really happens.  I was on several private groups.  And people joined and would get into an argument and leave.  Groups would break up and regroup into smaller groups.  About the time the babies were born and crawling, things general got moved over to Facebook.  Once you’d been friends online with someone for a year, it seemed safe to let the non crazy ones into a more real part of your life.  So we moved our groups to Facebook.  Again, there have been changes, people leaving groups – I even got kind of kicked out of one once.  But what has lasted has been some of the friendships. I have met several of these girls individually, in “real life” as I’ve traveled or they have.  And it’s always been great.  No horrible “catfishing” stories of people actually being a 50 year, creepy man (this has happened, though not to us!) or someone scamming for money.  Well, I have witnessed that one but I, fortunately, didn’t get involved.

This weekend, 6 women came to visit me.  They could have gone anywhere, as the people I am friends with typically meet up once a year.  I haven’t been able to join them for various reasons including timing and the expense of travel.  But even though I haven’t been able to join them in other cities for these meet ups, this year, they came to me.  The weekend was truly epic.  We had an enormous amount of fun.  I got to show off our beautiful city.  We sang karaoke, toured the homeless shelter at Light of Life where I work.  We ate our way through the city at such places as Steel Cactus, The Yard, Enrico’s Biscotti, Hofbrauhouse, and visited other establishments such as Over the Bar and Lava Lounge.  We gave a homeless man a cannoli, We rode the incline.  We Uber’d all over the city.  We even ran into the mayor and he was nice enough to greet my friends and say nice things about me.  It was a really fun moment.

They loved our bridges and rivers, were perplexed by why we put french fries on our salads and sandwiches, were moved by the homeless shelter and were puzzled by why people wear black and gold even when it’s not game day.  They made me laugh a thousand times.  We had heartfelt conversations, took naps and walked many miles.  I felt so energized and refreshed by this visit.  These women are so funny, generous, adventurous and have bigger hearts than the Duquesne incline car.

Kristy, Jess, Barb, Nichole, Annette, Mandy – you ladies gave me the weekend of the year.  I’m so incredibly blessed by your friendships.  My life would be less full if I had never landed on the July 2009 birth board.

Here are some photos of a weekend to remember.

 

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Check it: part 3

I met Tammy through one of my prayer warriors, Leigh.  And I met Leigh through my amazing friend, Laura, who passed away in 2013 from this dreaded disease.  Sometimes it’s hard to believe that Laura is gone.  I still see her signature symbol (rainbows!) all over the place and I notice her love of people, her legacy, really, lives on as great people continue to connect because of her.

Tammy’s story is much like the rest of ours – an unexpected cancer diagnosis for a young woman.  But I especially relate to her as a mother.  The news of a cancer diagnosis rips right through you, no matter what, but for a mother, there is this additional second terror that hits you What is going to happen?  What if I’m not ok?  Who will cut the itchy tags from their little shirt collars if I die???
I’m pleased to share Tammy’s story with you.  I wish she never had to go through any of this stuff, but because she did and shared her story, it strengthens and galvanizes me in my own fight.  (5 chemo rounds down.  7 to go!)
What I want you to know is that Tammy’s is a story of hope and current good health.  She is here today, in part, because she FOUND SOMETHING and she CHECKED IT!  Please let this be your weekly reminder that getting anything that concerns you checked out is your first punch in fighting cancer.  Earlier is always better and easier!  
 
Here is Tammy’s story in her own words:
 
“I‘m sorry. You have cancer.”
 
You are never prepared to hear those words. My cancer story began in the summer of 2010.  We planned a quick getaway with friends to Deep Creek for a weekend of boating, bonfires and board games.  It led me to discover a small lump on my chest wall. After taking a nasty spill off the tube, my life jacket pulled and I felt a pop.  I made my way back to the boat and could feel a small lump or something. It never changed in size like it would if it was swollen from the fall and no bruising, so my friend insisted that I call my doctor just to be safe. 
 
Normally I avoid the doctor at all cost but something just stayed with me to get checked; after all it couldn’t be cancer because I was only 38.  
 
I did what we all do and I googled the symptoms of breast cancer other than this small bump which was obviously totally related to the life jacket.  I didn’t  have any symptoms. 
 
I met with my doctor after the initial exam things moved at a quick pace. Initially they led me to believe it might be a cyst so that day we did an ultrasound but the location was tricky.  They felt it best we should do a mammogram and a stereotactic biopsy just to cover all the bases. Great! My lump was not in my breast – it was about 1/2 inch below my collar bone (the life jacket pulled so part of the tumor could be felt beneath the muscle.)  About a week later I had the testing and a week after that which was July 19, 2010.  I received that call and no matter how sympathetically it is delivered, the words “you have cancer,”STOPS YOUR WORLD. 
 
The future is never given but now it is dark, scary and fast.  As hard as it is to hear it is even harder to say. In the moments after the call I had to call my husband and I just cried on the phone.  The words just stuck in my throat. Finally, I said it and it was even worse saying it than hearing it. 
 
I had to leave work. Fortunately I work with amazing people and they were quickly learning of my meltdown and as I exited my office I saw the fear on their faces as i shared my news.  As the hours of that day past and my house filled with family and friends I needed a few minutes to myself.  
 
I was out of tears – you can only cry so much – so I prayed for God to take my worry.  I prayed that I would do whatever the doctors wanted, see, do, take whatever, just carry my worry, God. In that instance I was at peace and was overwhelmed with love and strength which slowly built to hope. It’s with that hope I carried to my many doctor appointments and it’s that hope I kept in my heart. 
 
It made hearing Stage 3, multiple types of cancer discovered, 8 rounds dense dose chemo, port,  hospital stays, radiation, BRCA 2 gene, mastectomy, prophylactic oophorectory (sounds like a Dr. Seuss word but it’s  removal of ovaries and the Fallopian  tubes), bone treatments not just manageable to survivable. Hope and holding hope high in your heart allows you to not only survive but thrive.
When I began treatment my daughters were 6 and 3 my hair was falling out so I armed them with safety scissors and they gave me the most beautiful haircut ever.  The fear disappeared from their faces and I gave them the power of hope.  And hope is like magic – it changes your attitude when the power of God intersects with your soul. The power of prayer and hope were my “secret” weapons in my cancer fight. And if it wasn’t for that life jacket pulling the muscle I may have never detected the tumor which secretly was growing under the my chest muscle.  Miracles happen every day. I am forever grateful for my prayer warriors, family, friends, Dr. Keenan, Dr. Rubino and Dr. Analo of West Penn great cancer care.
 

 

 

Remember…if it concerns you, CHECK IT.  And if your friend tells you about some bump or lump or weird thing, tell them to CHECK IT.
 
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Some days are tough. We have to be tougher.

Some days, you just have a “day.” I got chemo on Monday. Had to wear home the wonder woman fanny pack, got through Tuesday and Wednesday. Got unhooked on Wednesday. Went to work on Thursday. Friday, I had some appointments and some conference calls. I was doing ok, but took a downturn.  Nauseous, wobbly, shaky. I hate when my hands don’t work right.

Today is a rough day.  Cassidy’s last soccer game was this morning. There was no way I was missing it.  I thought it would be ok but I just felt so tired and cold and out of it.  My attitude was tanking and I could feel the negative affect I was having on my family.  I felt guilty and frustrated.  But I prayed.  I asked God to help me be thankful.
I came home and was treated to a lunch feast of Pho.  If you have had it, you know how awesome it is. If you have not had it, it is basically the world’s greatest chicken noodle soup. It’s a Vietnamese, and the kind I like to get is broth with shredded chicken.  It comes with rice noodles, fresh bean sprouts, basil, lime, and hot sauce. It is the most satisfying meal in the world, and my lovely friend, Kait, brought us some.
Then, she took my daughter outside and played with her for a solid hour so I could get some rest and Kevin could get some yardwork done.  Do you know how great that is?
So much to be thankful for.  I struggle with these side effects.  I hate them.  But I’m always much more overwhelmed by the kindness people show us. Nausea is overcome by a healing meal.  The shakes subside with a long hug.  The body relaxes when a stressful problem is solved by a helping hand.
I’m so grateful to be the recipient of such care.  I’m full of thanksgiving, now.  Eucharisteo.  The miracle is always preceded by thanksgiving.  Gratitude changes everything.  It melts a hard heart.  It makes “I was wrong” possible.  It shines warm and bright through cold and dark.  Thanksgiving compels us to consider our circumstances in their proper context.  And even when those circumstances are admittedly bad, like mine – against the odds – that willingness toward gratitude…it makes a way.  A way for hope.  And it becomes a useful weapon against fear.  
 
Sometimes, you just have to put on that red lipstick, say a prayer of deep thanksgiving, and wait for the miracle to propel you forward.  In my experience, it always does.  God is close.  He’s always waiting for us to grab his big, strong hand.  
 

 

 

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Check it. Part 2.

When I was growing up, my parents had this huge group of friends.  We would all go to the beach together.  The children would play in the ocean and the adults would do adult things that involved drinking beer, dancing and a theme that included costumes and songs and choreographed routines.  It was a lot of fun, and I miss those days.  One of the wonderful people who was a part of my life back then is Mary.  Through the glories of social media, we’ve reconnected, and I was dismayed to hear about her battle with cancer.  Until I, myself, was diagnosed at 35.  While I was still troubled by her illness, I found an encourager, a friend and fellow warrior in Mary.

I am profiling people in my life who have been diagnosed with cancer in an effort to remind all of my friends and family and anyone else reading this that cancer can hit anyone at anytime.  You don’t have to be afraid of that – because so many cancers are so treatable if you would just check out anything unusual and advocate for yourself so these cases can be caught early.

Here, Mary, who discovered her cancer through PAYING ATTENTION TO HER BODY and CHECKING IT shares her story in her own words:

My cancer was found by accident. In August of 2011, I went to MedExpress for some discomfort in my upper rib cage that I assumed was my gallbladder. I was 48 at the time and I just assumed body parts would start to give me trouble.  They sent me for some blood work and a scan of my gallbladder, liver and pancreas. That, my friends, is how it began. My liver enzymes were high and the scan of my liver showed something very bad.  After seeing a liver specialist, a battery of tests ensued in the next few weeks including a liver biopsy where it was determined I had breast cancer that spread to my liver. Now to find it in my breast, I kept feeling for lumps, pressing, pushing, nothing. I went for yearly mammograms and was about 3 months late in getting my annual exam. How could this be?  Soon thereafter, I met with my Oncologist, Dr. Lembersky at UPMC. he wasn’t convinced it was breast cancer since we couldn’t feel the lump so he sent me for a mammogram. Upon having my mammogram, they scanned and saw nothing, I showed the technician what I thought may be something – it was a thickening on my breast, sort of like having a hive. It wasn’t very hard, it wasn’t a lump, but a thickening.  Sure enough, a biopsy determined that was it. He confirmed that I had Stage IV metastatic  breast cancer that spread to my liver.  I was Her2 positive which is an aggressive type of breast cancer that tends to grow faster and is more likely to spread and come back. It’s also fueled by hormones so they threw me into Menopause to shut it down.  Dr. Lembersky was stern, said there’d be no surgery, just chemo and that they’d hit me hard. I said “listen, I have a 16 year old who needs me and a 401K that I want to spend. You do whatever you need to to make sure I stay here.” He said he’d do his best, but I could tell, he was very concerned as we were too. 


So the chemo began every 3 weeks for 6 months. My body was in shock, I never get sick, not a cold, the flu anything and my body was feeling the ill effects of chemo pretty quickly.  After my 2nd treatment, I ended up in Shadyside Hospital as my white blood cells were dangerously low. I became Neutropenic and they thought I had an infection. No infection, but the chemo was wracking my body. They brought me back after 3 days in the hospital. Along the way, I lost my hair, and had terrible side effects from the chemo that got worse with each treatment. By the time I was done, I was cooked and I’m not sure I could have gone on any longer. But with the presence of family and friends, I was able to push through.


Luckily for me, the chemo worked beautifully. It was squashing the cancer and my Oncologist was thrilled. I continue my cancer fight with an IV infused drug of Herceptin every 3 weeks and a pill called Tamoxifin daily.  This will continue for the rest of my life or until we need to do something differently. I began post-chemo scans every 3 months and now I’m out to every 6 months. It’s been 4 years since my diagnosis, I’m in remission and to this day, Dr. Lembersky calls me his “miracle patient.” I don’t consider myself a miracle, just lucky this time around.


In the beginning, I felt that cancer was controlling my life and would do so forever.  And in a sense it is a bit controlling, which I absolutely hate. As I continue treatments, there’s a constant reminder when I visit the Hillman Cancer Center and see so many people young and old suffering at different stages of this awful disease. There’s times I “room” with another patient and try to be their cheerleader, giving them my bleak story and telling them there’s a chance, to fight hard, to stay strong and that makes me happy.  Then there’s times that I break down because it’s so scary that I’m not in control and I hate to see people suffering. I’m truly traumatized by the whole event and when I talk about my chemo days, often times I break down because it brings back so many memories of pain and suffering.  But the one thing I can say is a cancer diagnosis to me meant that I needed to make some lifestyle changes. This was where I was going to be a little more in control.  After reading some books and educating myself on the disease, I truly believe cancer can be fueled by what we eat. I am trying to do everything I can so that my cancer does not return. I work with a nutritionist, try to eat clean, have an Integrative Medicine doctor that I see for the lasting side affects of chemo and continue follow-ups with my Oncologist. I had genetic testing done for my family (yes, even though I have a son, it matters) and I don’t carry the gene, nor can they find a genetic reason for the history of cancer in my family. My mom has ovarian cancer for the 2nd time (does not carry the gene) and her sister passed from the same disease. There’s something there, they just haven’t discovered it yet.  


I do look at life differently since my diagnosis in both good ways and bad. Unfortunately, I don’t have much sympathy when someone is sick with a cold or something minor and whines about it – now that’s bad. But then there’s the good – this has opened my eyes to how strong I actually am, to all the blessings in my life – my husband and son, my family and friends and the simple things in life. I pay it forward however and whenever I can. I don’t sweat the small stuff and try to put things into perspective.  I think Jim Valvano captured it when he said “”Cancer can take away all of my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul.”  I think that sums it up.  


Mary’s story has encouraged me greatly.  She fought hard and continues to fight to keep that pesky cancer at bay.  And she’s making it.  She looks great, travels for fun, and recently married her sweetheart, Harry.  Mary has been an example to me of a fighter and a person who has figured out how to enjoy life even when it’s really hard.

In addition to encouraging me, she introduced me to Chef Colombe.  Chef is part nutritionist, part life coach.  She had cancer, herself, 20 years ago, and though she went through treatment, she also believes in our ability to help heal ourselves through healthy foods, clean eating and other lifestyle changes.  Mary has been working with her for a while, and I started as well.  Though I have studied and researched a lot that is out there, regarding different opinions on what foods contribute to cancer and what foods fight cancer, Chef Colombe has significantly deeper knowledge.  And my favorite part of her approach is that she knows there are no one-size-fits-all answers.  Every body is different.  Every cancer is different.  Every chemo protocol hits each person differently.  She asks a lot of very good questions and takes your entire health situation into consideration.  She works with people facing all kinds of issues from cancer to celiac’s disease to general low energy.  She can be found at www.lifemadeedible.com

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Young Women Get Cancer

I mentioned casually to a friend recently that I have several
friends who are either currently fighting cancer, in remission or have passed
away from cancer.  She looked at me,
shocked.  She wanted to know how many
people we were talking about.  2?  4?  I
thought about it and realized that I have way more than that.  She acted as though this was quite surprising.  I don’t think it is anymore.  Young women get cancer. 
My cancer was discovered much later than it should have
been.  My presenting symptom (TMI ahead!)
was blood in my stool.  But I had seen three
doctors about it over ten years (TEN YEARS!!) and until I was diagnosed, was
basically told to eat more fiber.  I knew
something was wronger than that, and I honestly put off pushing for diagnosis out
of fear and embarassment.  (You haven’t
lived until a doctor is closely inspecting that area of your anatomy – bucket list
alert!)  I don’t live in the space of
blame, but I deeply regret not advocating more for myself, and wish I hadn’t
been so embarrassed to discuss a little blood in my poop. 
That regret and deep desire to help others avoid my mistakes,
I believe, is part of the significance of my adventure with cancer.  Those feelings are difficult to live with,
but I feel propelled by them in a positive way. I think I can make a difference
by broadening the scope of topics that are ok to discuss.  Think of it this way.  20 years ago the term “breast cancer” was
whispered shamefully.  We didn’t talk
about diseases that kill us and we didn’t talk about our boobs!  Now, you have NFL players sporting pink shoes
and there is a line of products with the phrase FEEL YOUR BOOBIES splashed
across them.  It’s ok to talk about
breast cancer.  Say what you want about
Susan G. Komen (many survivors do not love this organization) but they nailed
it in terms of social marketing.  They changed
the game. 
I want to change the game, too.  I want to help people do three things:
1.      Be more aware of your body – are you having
symptoms?  What are they?  Where are they?  How long do they last?  I want to end this mentality of “If I ignore
it, it will go away.”  That’s how people
die.  Early detection is KEY.  Cancer treatment is changing.  Sooner is better.  Waiting gets you a big fat NOTHING. So…CHECK IT.  
2.      Get over the fear of bad news.  Look.  “Bad
news” is a DIAGNOSIS.  A diagnosis is
GOOD.  Does anyone want to hear they have
cancer?  Nope!  But right now, if I could go backwards in
time to 2005 and get a Stage 1 cancer diagnosis instead of what has become a
Stage 4 diagnosis, I would be thrilled to be told I have early stage
cancer.  Overjoyed.  You can’t fight what you don’t know.  So…CHECK IT.  

3.   Get thee to thy doctor!  Scared of your doctor?  Find a new one.  I went through many crappy doctors before I found
my guy.  Dr. Martin Seltman at Metro
Family Health Center in Edgewood/Regeant Sq. 
He treats me with respect and dignity and as a partner in my care.  If it wasn’t for him, my PCP, I would never
have gotten to a specialist who diagnosed me. 
He’s my hero because he was a safe enough person during routine sinus
infection visits for me to finally whisper my terrible secret.  I recently wrote him a note because I thought
I should tell him how much his kindness and professionalism have impacted my
life. So…get a good doc NOW and CHECK IT.  

Check your boobs.  Check your butt.  That weird bump?  Check it.  Checkity check check check.

I’m featuring some friends in coming blog entries who are
fellow cancer fighters.  Warriors.  Bad Asses.  Diligent checkers.  First up is Katy Ursta.  
Katy is a
mom of two, wife of a great guy (who I happened to babysit many moons ago!) and
a top notch Beach Body coach.  She has
created a business that allows her to share her passion for fitness, transformation
and helping others, and allows her to work from home.  Katy was in great shape, active, happy and
enjoying a busy, productive life when she noticed a couple of odd
symptoms.  Her lymph nodes were enlarged
and her legs were dry and itchy.  She was also weaning her son and had some issues that presented as mastitis in her breast.  Smart
lady that she is, she went to her doctor and it was quickly discovered that she
had Stage 4 Hodgkin’s Lymphoma, a blood cancer that causes tumors throughout
the body.

Katy wasn’t about to take this lying down.  She went straight into chemo and continued
working out daily, dedicating her workouts to fellow fighters.  Example: 
“Today, we’re sweating for Jessi.” 
What an inspiration!  I know that
while we were in the chemo trenches together, she would spur me on to get
active even when I felt my worst.  Katy
has used her unique position and experience to develop a platform for speaking
and helping others get in shape.  She is
partnering with me in raising awareness among young people to not ignore those
symptoms, not fear diagnosis and get to the doctor.  Katy is a beautiful spirit who I am proud to
know.  She is generous, fun, friendly and
full of energy.  If she doesn’t inspire
you, no one will.  I encourage you to
check out her blog.  If you are looking
for a compassionate, supportive person to guide you in an effort toward better
health, she’s your girl.  Check it:    www.onefitfighter.com

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Next up: round 4

Let’s talk about chemo. 

I get a lot of questions about how my chemo works, and since I just completed my 3rd cycle, and tomorrow begin my 4th, I thought I would explain how my customized protocol happens.  I say this out loud as an answer to a question about 5 times a day.  So, if you ask me, I’ll know you don’t read my blog, or that you stink at reading comprehension.  Just kidding.  I know, I can barely keep track of it all myself and I’m the one doing it, so if you forget, it’s ok.  I don’t mind. 

The cycle starts on Monday.  Kevin and I go to the UPMC Cancer Center in Monroeville.  We meet with my oncologist, Dr. Mehta.  He is on the young side, and the right mix of serious, funny and hopeful.  I trust him and look forward to seeing him.  He asks how I’m doing, we go over any new side effects.  This time, at tomorrow’s visit we will be having a major discussion about my nausea from last time.  I have a folder’s worth of research in my head and my expectation is that he will be very responsive and helpful.  We need to get this nausea under control. 

After we meet with him, they draw blood to make sure my levels are high enough to withstand chemo.  This is my 12th round of chemo in my life (8 last time plus the three I’ve had) and I have always been ok.  However, I closely review my own blood work and I notice a few levels that are concerningly low. We have discussed this and Dr. Mehta has a close eye on them.  After they take my blood, I go back to the room and pick a chair.  The room is open, with waist high walls and partitions.  I try to get a chair in a sectioned off area – depending on who my companion is, we can be a bit rowdy, and many chemo patients nod off to sleep during treatment.  Kevin stays with me until I get hooked up to my pre-meds and then he goes off to work.  Usually my mom comes, but if she is otherwise engaged, like watching Cass if she has the day off school, different friends fill in as chemo companion and chauffeur. 

The pre meds are dispensed via IV.  They include fluids for hydration, (basically everyone in chemo is dehydrated.  Want to be a pal?  Offer me hydrating beverages whenever you see me) steroids, (they help your body deal with the side effects) and anti-nausea medication.  This takes about an hour. 

Then, they change the bags and bring out the chemo drugs.  Oxaliplatin is the main drug for my type of cancer.  It’s side effects are primarily nausea, fatigue, hair loss and cold sensitivity and neuropathy.  This means that for a few days I can’t touch or drink cold things – it causes a seriously unpleasant sensation.  To the point that even when that effect has worn off, I get anxious, worrying that touching or drinking something cool/cold will hurt me.  I seem to be experiencing some hair loss this time.  I am losing quite a bit in the shower when I wash my hair.  I am thankful that I have a lot of hair, because it will hopefully be a while before it’s showing and I feel like I have to do something about it.  (Head shaving party?!)  It’s possible it will just thin some, so I’m not jumping the gun on this one.  But I’m watching vigilantly, lest I be that in denial cancer patient, walking around with patchy mange.  Also?  Why my head hair??  I notice my leg hair hasn’t exactly taken a vacation.  Whatever, body. 

Vectibix is another chemo drug administered via IV.  This drug causes a terrible rash.  I seem to be getting it mildly on my face and chest, but it’s primarily on my scalp.  It itches and is a bit painful.  So far, not anything I can’t ignore, but I wonder how much worse it will get.  It will be really awesome when I have to shave my head and we can then see it’s covered in a horrible rash.   Someone, please start scoping out wigs.  Something with bangs, perhaps?

Finally, we have good old 5-FU.  I hate this drug.  FU indeed.  They give me a bolus which is a syringe of it, so it comes on hard and fast, and then they hook me up to the Wonder Woman fanny pack.  I cart this large and in charge pack around everywhere I go for 46 hours following hook-up.  It’s cumbersome and makes a clicking noise about every 30 seconds.  It is always a welcome relief to get it disconnected.  But on Wednesday, when I’m disconnected, that is when the side effects really start getting bad.  Nausea, fatigue, digestive issues, heartburn.  It’s not usually all of those, but those are the ones that have given me the most trouble.  They last well into the weekend.  Sunday is usually the day that things start looking up. 

This past time was pretty rough.  The nausea really gave me a hard time.  I have a game plan for dealing with it this time, so hopefully we can get in front of it and head it off for at least a while.  If I could get one or two more days of feeling ok before the really difficult days set in, I would be very grateful. 

Generally, with chemo, the drugs have a compound effect, meaning the side effects they cause get worse each time.  But sometimes, certain effects, your body has a way of adjusting to them and they get better.  I’m hoping and praying that we don’t have all of these side effects in increasing levels each time.  But I also know that whatever comes, I am capable of dealing with it.  Prayer, thankfulness, attentive medical staff, and unflagging support, assistance and encouragement from #teamjessi is all critical and effective.  These are the tools by which cancer and chemo are overcome.   

My attitude is currently ok.  I’m having a little anxiety and discouragement facing tomorrow.  I have some prayer and some other attitude adjustment activities on the schedule for today.  Each time, so far, I have been able to rally, able to see the hope, see the need to hold my head up high, and face it square on, get down to business and get it done.  Sometimes, it takes more effort.  Or more God. 

Knowing how much people care has this magical effect on me, too.  When it is clear that someone has thought about my current situation and reaches out and does something in an effort to help, it’s truly incredible and I have moments where I think that maybe one of the reasons I am going through this really difficult time is that I never would have understood the depths of care some of the people in my life have for me.  My mom, cooking up a storm two weeks ago so that I would have organic, healthy, but comforting meals all ready to go when I didn’t feel like cooking.  A friend continually asking me what I need and figuring out that a massage gift card was the sweetest gift I could have received.  Another friend who fights hellish traffic every Tuesday to bring my family a gourmet meal from another friend who has agreed to provide it each week as long as we need it.  A friend so kind, she supplied me with many needed facial products to combat the acne/rash.  A group of friends, most of whom I have never met in real life, chose Pittsburgh for their annual gathering – I assume partly because they are dying to see America’s Most Livable City!  But also partly because I’m here.  I can’t wait to see these ladies!  Friends checking in, praying daily, offering help with Cass – heartwarming, life giving.  

It doesn’t change anything about how tough it is to get through this.  But it makes all the difference.  It balances out the pain and the fear and the anxiety with love.  LOVE is bigger.       

 

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Eucharisteo

So I’m reading this book on being thankful.  I was led down this path two ways.  One is that the magnificent Tim Keller mentions being thankful as part of the way you respond to adversity in an effective, Christ-like way. Ever since I read that in his book Walking with God through Pain and Suffering, it has stuck with me. Thanking God even when things are not going well. Being thankful in the midst of scary and painful circumstances. How can this be what He expects of us?

Then, Lisa Slayton, my trusty mentor, gave me a very interesting book – it is called One Thousand Gifts.
The author is an interesting person. She writes with peculiar cadence and word choices. She is a farmer, or maybe more accurately a farmer’s wife and mother of six kiddos, and writes like she has at least a PhD. Maybe she does. But her simple life and complex thoughts are unexpectedly divine.  I’ve seen a clip of her speaking, and she dresses and talks like an NYC poet. Such an interesting woman!  Ann Voskamp.
Early in life, she and her family experience the most horrific of tragedies. Her young sister was very accidentally killed by an oncoming delivery truck driver. They all saw it happen. Devastating. Tragic. Gruesome.
When you go through something like that, you pretty much either shut down, cross your arms and turn away from God. Or you run toward him desperately, knowing that He is the only possible thing that could ever make you in anyway OK again.
She initially chose the former, quietly, humbly.  Confused, desperately disappointed.  She continued church going but closed off part of herself.  She settled into a longtime depression of sorts.  She didn’t become an atheist or anything – she just stopped trusting God and stopped being engaged with Him.
The book talks about how she came across this idea of Eucharisteo, the table of Thanksgiving.  As long as there is grace, thanks is possible, and so joy is possible.  She met someone who was thankful IN ALL CIRCUMSTANCES (and he’d been through some doozies.)
She knows how Jesus thanks God before he asks him to do stuff. She notes that thanksgiving always precedes the miracle.
She thinks hard on this Eucharisteo.    She considers how even our saving by Christ must include gratitude.  How else could we accept the gift of salvation but with gratitude? Gratitude is the evidence and manifestation of our acceptance of his extended grace.
So she begins the list. A list of things she is thankful for. Little things, big things. God’s grace and the beauty of morning sunlight.  Her husband’s embrace.  Her children’s bare feet.  Apparently there is a workbook that goes along with this book. I don’t have it. But I got the idea that I should probably start making a list, too. The title of the book is One Thousand Gifts. So I guess that is what we’re shooting for, here. So far, I’m up to about 200. I forget things that should be obvious. I think I’ve written down some already, and realize I haven’t. I’ve written some things twice, I think. But here is the list I have so far. Many of you reading this will find your names on it. And if you don’t, it’s probably because my brain is addled from chemo and pain medication.  it’s far from complete, so your name may well be popping up soon.
I’m only about a third of the way through the book. And I have not magically transformed into a naturally thankful person. But I do find myself taking note of blessings that I took for granted before. Little things that people do or that spring up before me, source unknown.  I’m more aware, and more willing to give thanks even if I am not feeling especially thankful. Sometimes, the very act of thanking prompts those feelings of gratitude. There is some special magic in that. I don’t have it all figured it out. But I think I’m on the right track.
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Here We Go! Surgery Monday.

Tomorrow night or Monday morning, however you think of 3am, I will get up, shower with this weird stinky pink antibacterial soap, leave the house around 4am and arrive at the hospital to have one and a half significant organs removed. 

My life is so weird. 

I remember, recently upon getting this diagnosis, saying to Kevin “Well, it’s never going to be normal again.”  These are true words.  But they are not bad words. 

When I said “normal” what I meant was the idea of waking up in the morning and going through my day without worrying about something major and specific.  Sure, we all worry our child will run into traffic or that argument with a friend won’t get resolved.  But there is this “normal” kind of living that you do when you feel you have control.  You have a general idea of how the day, the week, the month will go.  You confidently plan activities for next summer without wondering if you will be healthy, functional, alive?  You have a sense that all is well, nothing terrible is about to happen.  Life feels pretty predictable. 

When you have cancer, or had cancer that might come back, you live with this sense of dread.  Is it coming back?  Will it be worse?  Can I beat it again?  Cancer is so disruptive and unpredictable.  Do you know how many tests they do?  SO many!  And one wrong number – one field in a huge spreadsheet, can throw everything off.  And every single thing you do (port placement, chemo, surgery, doc appointments) requires so many things to go just so.  And organizing your schedule around it while trying to minimize the impact on everyone around you is just so incredibly difficult and stressful.  Cancer makes life so darned unpredictable. 

But the truth is that none of our lives are predictable and the control we think we have, well, a lot of it is an illusion.  Cancer (and other hardships) just pull back the curtain a little bit. 

I just heard from a friend that her good friend’s husband passed away very suddenly from a heart attack.  No warning.  He leaves behind a stricken wife and a handful of stunned children.  It sounds like no one saw this coming.  Getting the rug pulled out from under you.  It feels so unfair and so wrong.  We turn away from God entirely, or, toward God in rage, in total despair.  

How. Could. You?  
Why us?  Why this?  Why now?  We rattle off our good deeds and offer them up feebly.  Wasn’t this enough?  What did we do to deserve this?  Is it because of that terrible thought I had?  That argument I didn’t resolve?  Was I not grateful enough?  Selfless enough?  I didn’t pray enough, did I?

But God is not much of a transactional God.  There was one significant transaction to wipe out the rest.  We sin.  Jesus went to the cross to wipe out all of those sins for those who believe.  They are gone.  Erased.  You don’t have to pay for them again.  Scripture makes this clear.  God does not punish us for a debt that has already been paid in full.  He is not up there in the clouds doling out punishments to smugly teach us lessons.  God is not mean. 

So, what is He up to?  Well, I wish I could explain it in a way that made everyone feel better but I can’t. I have a few things to share that might help a few people a little bit. 

Grief is real and big and purposeful.  One must walk through grief.  There is something about grief that changes us, makes us deeper and realer and more whole, eventually.  Even though it feels as though your very heart and humanity have been forcibly taken from you.  But grief is functional, and it must be experienced.  No shortcuts.  I believe this may be part of why there are not easy answers.  We simply must  move forward through the very human experience of grief.  It equips us.  Strengthens us.  Makes us softer, wholer and better somehow. 

No way over, under or around.  Just…through.  However, there are some things to consider as one walks through grief, that I believe are useful.

We don’t know what God is up to in the short term.  We just don’t.  Romans says “Do not conform any longer to the patterns of this world but be transformed by the renewing of your mind.  THEN (emphasis mine) you will be able to test and approve God’s will.  His good, pleasing and perfect will.”  Ok, so what this means, I think, is that once we ditch our worldly ways of thinking and doing, we are much better at seeing what God is up to.  But most of us are a long way off – still early on that journey of getting our minds renewed.  But.  If you really want to understand what God is up to, focus on Him and His ways.  Seek to understand His character and how He moves.  If you’re watching trashy reality shows and reading crappy romance novels and you’ve let yourself get brainwashed into expecting certain kinds of neatly wrapped up happy endings, you’re on the wrong track.  I love movies and books and all kinds of entertainment – I just have to make sure I don’t let those fairy tales strongly guide my expectations and how I think life works.  In the Hallmark movie, they always get together in the end, the kid gets rescued and they find a cure before it’s too late.  Not so, at least not always, with life.  In the meantime, while still fledglings at the whole figuring out God’s will thing, we simply have to trust Him.  I pray each night that I could somehow “Trust Him more each day.”

One path to trusting God more is thankfulness.  Grief and gratitude (for the grieving) or fear and gratitude (for the worried) seem like unlikely neighbors.  But they can be.  I can tell you with deep confidence that finding something to be grateful for, even the smallest thing to start with, changes your mindset.  Gratitude begets more gratitude.  It is easier to trust God when we intentionally reflect on all of the blessings we have received.  It seems weird, but I have worked myself into a near gleeful frenzy when I’ve started thanking God for everything I could think of.  Sometimes it happens differently.  For example, I love receiving thoughtful gifts, especially unexpected ones.  When I come home to a box or two on my doorstep addressed to me, and I tear through them to find fun Wonder Woman accessories or soothing spa products or a gift card somewhere fancy I’d never buy for myself, even if I’m worried about test results or feeling discouraged, those gifts can just lift me out of my funk and remind me of how much I’m loved and how God cares for me through other people and how thoughtful and generous people can be, how fun can burst out of nowhere, and how incredible and wonderful my life is, and all of a sudden this Stage 4 cancer patient feels on top of the world.  Because I feel thankful.  Gratitude lifts us up, toward God.   

God is in it for the long game.  What happens short term is PART of the bigger picture, but you may not see or understand how it all fits in.  Scripture clearly tells us that He works ALL THINGS for OUR GOOD if we love Him.  I’ve seen some of that.  There are incredible examples of God using evil for good.  Tim Keller says that God gives Satan (and us, our bad choices, etc) just enough rope to hang himself with.  I love that.  Think of Job.  All was taken from him.  He wrestled with it, debated with his friends, argued, even with God Himself.  God never gives Job the WHY but he does restore him and bless him.  This story has impacted millions of people for thousands of years.  Many a sufferer has gone to that Old Testament book in a desperate state of grief, anger or despair and said “OK, help me.” 

Imagine if my story, of struggling with cancer, made it into the volumes of history because I had a willingness to trust God and not a need to know why.  What if people, years from now, after the zombie apocalypse, went to this blog to read about how Jessi Marsh of ye old Monroeville, handled her suffering?  They probably won’t, and that’s ok – I don’t aspire to be Job.  I’d rather be known for doing something cool like inventing a teacup pig that would actually stay tiny so you could carry a wee little pig around with you wherever you go and let him out to run around the coffee table and teach him little tricks!  Heeeheeeee!  Or, you know, like, ending homelessness, than being known for suffering well (wouldn’t we all??)  But our stories, how we suffer, are important.  I hope to be authentic, to share my moments of doubt and fear (had a BIG one last week when an EKG came back abnormal.)  And share my sincere, honest hope in Christ.  My belief that God is WAY bigger than all of this but personal enough to look at me with love and care when I hurt and when I’m scared.  He reminds me that there are major challenges ahead, scary moments, physical pain, uncertainty, sadness, loss and strife.  But it’s my path, for my adventure.  And he is the activities director, the captain of the boat, the pilot of the plane, my doctor, my lawyer, my Sherpa, my advisor, my battle strategist and my friend. 

I love in The Lion, The Witch and the Wardrobe, which Cass and I are currently reading, when the children ask the beaver if Aslan, the lion is safe.  The beaver says,  “‘Course he’s not safe.  But he is good.”

That’s God.  Not necessarily safe.  But definitely good. 

So, that’s how I’m approaching this surgery.  It’s an adventure.  I hope it all goes very smoothly but it might not – but I will make every effort to approach any bumps in the road with the mindset that God is always good.  He loves me more than I could dream, and He’s got an incredible story in mind for me that is slowly being revealed.              

 

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The case for over-sharing

Last week, Mark “Facebook” Zuckerberg announced the happy news that his wife is pregnant, along with the normally private information that the couple had endured multiple miscarriages.  With that announcement came a flood of empathy and support and appreciation.

Sharing certain things is difficult.  Especially when the news is so closely related to your body.  Some things are so personal that many people receive difficult health news and immediately make the decision to keep it private. I completely understand this.  In early 2009, during my pregnancy with Cassidy, I was diagnosed with gestational diabetes.  At the time, my response to this news, in terms of emotion, was SHAME.  I felt I had failed my little fetus.  I completely took responsibility – one of the many downsides to being natured and nurtured into leadership tendencies is that you tend to take responsibility for just about everything.  I was certain I had eaten too much Goodfella’s Pizza in college (holla, Bobcats!) and I was paying for it dearly.  Whenever I thought of it – pretty much constantly because I had to test my blood sugar 4 times a day – I would shut my eyes and bow my head in shame and think “it’s my fault.”  So, my shame led me to what we have constructed as an acceptable euphemism: privacy.  Hey, there is nothing innately wrong with being private – but we would do well to examine our reasons for desiring privacy.  In my case, it was because I was totally embarrassed and ashamed.  I assumed that anyone I told would nod knowingly and judgingly and condemn me for every carb they had ever witnessed me enjoy.  I shielded myself from that by telling very few people about my diagnosis.  As time went on and keeping it secret became cumbersome, I found a level of comfort and reduction of shame through the sisterhood I found in online communities of ladies with the same issue.  That, along with my natural extroversion, allowed the news to creep out timidly.  Typically I would follow the bomb drop with statistics about how common it is and how even skinny people get it and how well I was managing it through a heroically strict diet.  I steered people toward admiring me for eschewing sugar during pregnancy, desperately managing their ideas about me to protect myself from the judgment I anticipated. 

Years later, with that far in the rear view mirror, I talk easily about gestational diabetes.  I have grown in a number of ways that allow me to feel less concerned about that judgment, less bothered by those kinds of worries.  I am a bit gentler with myself and others – by the way, I have found that the gentler we are we ourselves, the gentler we can be with others – and I have seen plenty of bad things happen to good people, both as a result of their own choices and a result of the strange non-formulaic, apparently senseless ways of this world.  Grace is in order in both cases.  And if you don’t want to give me grace and prefer to judge me, I can see now that is way more about you than it is about me.  You and God will have to work that out, and it will probably be quite beautiful when you get around to it. 

I share about cancer freely.  I am sure some people have thought what I might have done to give myself cancer.  We think that way if we are afraid and want to feel sure it won’t happen to us.  The person with lung cancer smoked – whew, that won’t happen to non-smokers, so it’s ok.  The child drowned because the mom let the 10 year old babysit -whew, I would NEVER do that, so it’s ok.  Apparently senseless, non “obvious fault” tragedy is so much scarier.  The bowling ball rolled out the window and hit him on the head and killed him??  He was just WALKING ALONG?  Wait, I do that every day!  That might happen to me!!!!  Arghghghgh!  I also know some people don’t think like that at all.  Naturally empathetic people just care.  They just want to care for and comfort you.  They don’t care if you have HIV because you had unprotected sex or Hep C because you used drugs.  They just feel for you. 

That fear of judgment isn’t the only thing that prevents us from sharing.  Some worry that others will see them as weak.  Many people confide in me these days and a friend recently shared a cancer diagnosis.  This person didn’t want to be seen as incapable of doing their job.  Another person in a similar situation didn’t want the fuss and attention.  Yet another person didn’t want his family to worry.  I do understand these issues.  But I’m here to tell you there is something else to consider. 

My cousin recently called to tell me about how much he enjoyed a recent event where military and other people shared stories of overcoming insurmountable odds and thriving after experiencing trauma.  They did so with grace and humor.  It clearly inspired the audience deeply.  Those people chose to overcome their fear and value of privacy for the purpose of encouraging others.  Everyone is going through something.  And most of our world’s big problems (divorce, death of a loved one, a scary diagnosis, severe injury, intense failure) feel huge and solitary.  We feel alone in our situation.  Until someone else bravely shares.  Our tight, closed, scared selves relax a tiny bit and we hopefully whisper “You, too?” 

Lost babies is one of the most taboo subjects around.  I hear there is an underground network of people who privately rush to the sides of the recently bereaved.  I am thankful to not need admission to that club of support, but I guarantee you, there is love to be found there that exists no place else.  I know Mark Zuckerberg isn’t everyone’s favorite visionary.  But his vision is clear – that social networks operate to bring people together and inspire openness and collaboration and progress.  He took it straight to the heart with this one and I’m joyful on behalf of those who have felt they were required to grieve privately.  Many will choose the same quiet grief, even now that the door has been blown open.  But those who have longed for a bigger space to walk through their sorrows – Mr. Zuckerberg has knocked down some walls, put in a coffee shop and installed Wi-Fi.  He has invited you to join him in that space. 

My hope is that my decision to share openly about cancer has made it a little easier for someone else.  I share to create a bigger space, to make more room.  You can totally hide by yourself in the dark and deal with it on your own.  I judge ye not.  But if you want to come on out, there is plenty of room.  And pizza.  Even though I only eat that very occasionally now because it causes cancer.  Just kidding.  Like 97% kidding.  It’s actually aspartame.  Or Kenny G.