Always be your own best advocate

One day I want to share publicly the story of how I was lead to a cancer diagnosis. Many of you don’t know that when the tumor was first discovered on a CT in the ER, the attending doctor thought it may just be a shadow, no need to worry.  Overnight, the next attending viewed the same scans and ordered a needle core biopsy.  Four days later I was told that the mass was benign.  Had it not been for yet another doctors opinion to send me to a surgeon at Shand’s, who knows where I would be today.  

Now, over a year later, I still insist on getting answers when I feel something is not right.  And if that means going to get a second, third, or even fourth opinion, then you do whatever it takes to get a definitive answer or plan of action.  

January 6, 2017 shook my world.  Being told that your scans had significantly gotten worse, and that it appears as if your cancer is progressing and presenting as being refractory (meaning not responding to treatment) is downright terrifying.  After being told this news, the doctor said to be certain he was going to send me over to IR to have a needle core biopsy done.  I immediately questioned this.  I had been told previously not once, but twice by two different doctors that this method of biopsy is not a reliable method of confirming lymphoma.  My doctor then agreed to send me back to the thoracic surgery department at Shands.  Why am I having to be the one calling the shots?

Three weeks later I was being admitted for a surgical procedure known as “VATS”.  Three incisions to the side of the chest, and waking up with a chest tube in the right side of my rib cage.  The surgeon removed two lymph nodes to send to pathology.  Five days later I’m blowing up the phone lines to my oncologist as well as my surgeons office to get my results. You know who calls me?  One of the nurses.  And all she says is your pathology came back as cancer free.  I burst into tears.  And then the questions start rolling through my head.  “How is his possible?”  “Are you sure you have the right chart?”  “My name is Ashly Greene, DOB…”  

“Ma’am,” she interrupts me, “this is good news.”  I told her I just had too many questions and I needed to speak to my doctor as soon as possible.  A couple hours later he calls and confirms the results and nonchalantly says, “well the only way we can be sure would be to biopsy the other areas, but I feel as if we can just wait and repeat the scans in three months.”  PERFECT.  “So, I can cancel my bone marrow transplant consult tomorrow?!!”  “No,” he says, “you need to keep that appointment just to be established with them on the chance we need them in the future.”  GREAT.  

And here’s when I post my video of absolute and sheer joy.  I don’t think I stopped crying off and on the entire day.  My husband was nearly brought to tears when I told him.  I hadn’t seen him that happy and that relieved in a long time.  That is what made this next part such a hard pill to swallow.  Hadn’t we had enough let downs and disappointments?

Fast forward to the following day and here’s where the reality begins to sink in.  Here’s where I begin to question what I heard and what I thought those results meant.  I thought it meant I was in remission.  I thought it meant I was in the clear for at least three more months.  The transplant doctor tells me he’s not convinced either way.  He’s not convinced I don’t have refractory Hodgkin’s, nor is he convinced that I do.  “Ok, but I thought the report said cancer free?”  “Yes,” he said, “but those are two very small pieces of the puzzle.  They didn’t biopsy the new growth or some of the other areas to be certain.”  I was also told that although there was no evidence of cancer in those nodes, the pathology still came back abnormal: significant granulomatous changes with focal areas of necrosis.  

And no, this is not a result of the damages from chemo because they have record of this in some of my nodes when I was first diagnosed with Hodgkin’s.  What that means?  It is either my body’s immune response to active cancer SOMEWHERE, or, a separate inflammatory disease all together.  CRAP.  This isn’t over.  Oh and to top off my wonderful day at the bone marrow transplant unit, I was also told that if my cancer does in fact prove to be the refractory type as they suspect, there’s only a 50% 8 year survival rate with salvage chemo followed by a stem cell transplant.  PERFECT.  Just what I wanted the hear.  I left there with them putting me on “deferment”.  Nothing scheduled now, but a possibility in the near future.

I was so upset and frustrated that I requested for my surgeon to call me.  When we connected over the phone, I asked him why he didn’t take from more areas.  His first response was, “we didn’t expect these results.”  Meaning him or my doctor.  But honestly, is that how you should approach any relapse/refractory/staging biopsy.  I only consented to this surgery being done for a second time because I believed it would be the most thorough approach at getting a clear picture of what was going on.  Yes, it was still good news.  And yes, he did what he felt was best and safest.  However, I just feel as if my oncologist and surgeon should have been working together on what areas to biopsy for conclusive results.

After processing this information for a couple days, something in my gut didn’t feel right.  I was feeling very unsettled.  That’s when I called down to my second opinion hematologist whom I saw back in November.  They agreed to see us right away.  Finally, someone was pushing for answers.  Finally, someone wasn’t going to accept just going for the “easiest” areas to biopsy.  Finally, someone was going to insist on taking sample of the biggest and most problematic areas on my PET and CT.  Finally, I wasn’t having to be on my own as a patient advocate fighting for a definitive YES or NO to the question: Do I still have cancer?

Next Wednesday I will meet with a thoracic oncology surgeon at Moffitt Cancer Center to schedule what is hopefully my last surgery, for a while at least.  


It’s not over…Yet.

So, nobody ever talks openly about life after cancer treatment.  I had envisioned it many, many times nevertheless.  Nobody tells you it’s hard. They don’t explain that you may not be the same person inside and out when it’s all over.   They also don’t explain that it may not be over when you think you’re done.  And while that may not necessarily be a bad thing, it’s a scary realization.

The last day of chemo was one of those days that evoked an array of emotions.  It didn’t matter how sick I felt, or how anxious I was pulling into the hospital parking lot, because this was it.  No more chemo regardless of what happens after today.  (So, I thought with a 90% certainty).

The first couple weeks thereafter were typical.  Still battled the flu-like symptoms and extreme fatigue, although I felt as if an elephant was lifted off of my shoulders.  No more anticipation of the next Thursday.  Thank God.  Now, nearly 5 weeks later I am riddenend with all these new emotions.  I am boggled down with fear that my PET will show trace amounts of active cancer.  (My doctor prefers to wait until chemo is complete to do a PET, so I have not had one since initial staging). 

Aside from the “scanxiety”, I feel a sense of loneliness and confusion that I wasn’t prepared for.  The PET was inconclusive and the CT showed adenopathy and “stuff” going on in my chest.  Screw you cancer and the horse you rode in on.  Today should have been the day I was given my life back, but instead I have more uncertainty and frustration than I’ve had in months. 

I will have more answers on Monday morning.  More tests and further discussion.  And then we wait.  Again.  30 days to see if the lymphadenopathy will go away.  30 days to see if the lymphoma is spreading.  Or 30 days to see if it’s just the aftermath of the chemo effects inside my chest.

When I had my mid chemo scan back in June, I was responding positively to the ABVD regimen.  I showed no sign of lymphadenopathy.  Dr. Dang told me this morning that 10% of patients with a similar case of Hodgkin’s will not respond to chemo or will have a relapse during treatment.  Unfortunately, I may be one of those 10%.  

Cancer is unpredictable, and it can be quite resilient, so I’m learning the hard way.  I was diagnosed with Stage 2 Unfavorable Classical Hodgkin’s Lymphoma Nodular Sclerosis.  The “unfavorable” meaning 3 or more cancer spots or lymph nodes involved.  I had the “good” cancer they said.  Now, I’m rather insulted that any cancer is referred to as good.

Best case scenario is that the lymphoma has not returned and I will deal with issues in my chest due to almost 6 months of chemo.  Worst case scenario is that a month from now we will be preparing for a more aggressive approach involving high dose chemotherapy and stem cell transplant.  

If you believe in positive vibes, send them this way.  If you believe in the power of prayer, please keep my family in yours.  I do not want my son to see his mom sick any longer.  It’s not over…Yet.  I will never give up, never give in. 


Guilty Gratitude

What a powerful experience.  An emotion that drives many of us to feel less than, ashamed, or even invalidated in our own feelings.  Whether it be true or not.  I believe guilt is the foundation by which many of us experience anxiety, depression, pain and struggle.  Especially with the exposure from social media outlets.  Another fallen officer whose family is ripped apart in the blink of an eye.  Another soldier who won’t be coming home.  Another child who will be laid to rest after a long battle with a childhood cancer.  Another mom and dad who won’t be bringing their child home from the hospital.  We are certainly no stranger to the pain and suffering that exists in the world.  It makes me physically ill to think about and yet here I am, still suffering.  Suffering with my own battle and feeling the heavy weight of guilt because others have it worse.

To each his own is an understatement.  We all feel things and experience life events differently and very personally.  I have to learn to grant myself permission to feel, to grieve, and to wallow in my own emotions.  This is after all my journey, although I must not forget I am not alone.  The ironic thing about life changing events is that each persons experience is individualistic in nature.  Maybe people think that you’re so wrapped up in what you’re dealing with that we won’t notice what’s going on around us, but you tend to pay attention more than ever.  

I don’t really appreciate the saying “it can always be worse” even though I’ve said it many times myself in the past.  Logically, yes, the words are probably true.  But it can be a hell of a lot better too.  To every person, what they are going through is very real and very raw.  It may simply be a flat tire on the way to work, that will end up costing them an hour of two of pay and a hundred and fifty dollar tire they couldn’t afford.  For that person, in that place and time, it sucks.  Does it compare to experiences of life and death, of course not, but it doesn’t take away from how that person is feeling in that moment in time.  

I feel guilt because I feel as though I may have felt more anger than gratitude over the last eight months.  The experiences I’ve endured are ugly.  They really make you question things like “is there a God?”  Or, “do things really happen for a reason?”  Also, if I had a dollar for everytime I heard how this is going to make me a better, stronger person.  But why, I want to scream.  Was I really that bad to begin with?  Did I need some serious fixing that could warrant the last several months of my life?  I know I can’t possibly be the only one who questions things when things go wrong.  When devastation sets in and you want to drop to your knees and ask why.  

Recently, friends of our best friends were hit pretty hard by devastation.  I can’t tell you how many times I read others response to their loss. “You will rebuild.  They are only things.”  Although I have never experienced the situation at hand,  my stomach cringed everytime.  Not because the people saying these things were ill intended.  As a matter of fact, I am sure it was just the opposite.  Human beings are fixers by nature.  They want to say the right thing to make everything seem just a little better at that moment.  The only problem is, when you are grieving, all you want is for those around you to allow you to grieve.  To just shout from the rooftops, “this hurts so bad!”  You obviously will get through this, but for the time being let the grief be felt and the devastation be absorbed.  

I felt immense pressure in the beginning of my diagnosis to uphold this hero front.  This mask of strength and optimism to put others at ease when deep down I was the one who needed rescuing.  The beginning was also the easiest in some strange way.  Maybe it was the adrenaline.  The feeling of going into battle.    Little did I know that my trips to the doctors wouldn’t have empowering songs playing in the background such as “Eye of the Tiger” and “Survivor”.  There wouldn’t be crowds of supporters cheering you on and there certainly wouldn’t be this overwhelming sense of pride for serving your duty.  Everyone’s lives are moving forward while yours is on hold.  The trips are quite dreadful to be quite honest.  I’ve also heard I need to change my perspective towards treatment because it will give me back my life.  Let me tell you, easier said than done.  If you had a mile of burning coals to walk across before you could enjoy your life again, would you thank your firey morsels of pain and agony for getting you where you needed to be?  Maybe.  But certainly not without cursing their name.  I promise you.

So, going back to where I began, I feel immense empathy towards those struggling with his or her own devastation.  However, I struggle with the petty complaints of everyday life.  I have to constantly remind myself that we are all humans, and at one time or another, I was that person complaining about things that didn’t deserve a second thought.  I am now that person who is learning very deeply about what I refer to as guilty gratitude.  Grateful to be surviving, but guilty for struggling so hard.

I want to end with a story for how powerful the mind is.  Every other Thursday is treatment day.  For those of you close to me or those around me, you are well aware I struggle with severe flu-like symptoms for days following my chemo, and then it subsides to nearly fatigue before I have to return and start all over again.  It is a routine I have come to accept and anticipate.  Now the interesting fact is that the vomiting control center of the body is located in the brain, although you absolutely can have triggers sent from the GI tract.  Thursday mornings are now violently ill for me for no other reason other than past experience.  It literally takes everything in me to get out of the vehicle and walk through those doors.  The smell alone sends me into an intense case of the dry heaves before I no longer can control the urge.  I have to be honest in saying I can’t write these words without gagging nearly to the point of getting sick.  

The point of this story is that the mind translates experiences to emotional and often physical responses.  It is so incredibly powerful.  Don’t let your experiences hinder your emotional growth.  There is plenty of people who have it worse, and at the same token, plenty who have it easier.  We must not feel guilty for how we experience life’s triumphs and let downs, and also not judge others for how they experience theirs.  It’s what makes us who we are and we shouldn’t ever feel guilty for that.  Someday I will get there.  Tomorrow is just a bridge.  For now I will practice this affirmation: “From guilt, to grace, to gratitude.” 


F*** Cancer

Sadly enough, you or someone you care about has been or will be affected by a cancer diagnosis.  The statistics are astronomical.  So what exactly does this mean?  I want to share from my perspective in hopes that it will help make things easier to understand for someone else.  I literally stalked threads and blogs similar to these early in my diagnosis because I was lost and confused.  Just downright scared.  Am I scared now?  Absolutely!  Only today, as I’m approaching the end of my chemo cycles (September 8th) I am no longer solely focused on surviving the treatments as I am looking forward to life after cancer.

Sitting down with an Oncologist for the first time is a surreal experience.  You may not even feel sick and you are hearing cliche phrases such as “life or death.”  Say what?!  Regardless of the type of cancer, the stage, or even the severity of the prognosis, Cancer is going to hit you hard.  As a woman, you’re going to be faced with an even bigger challenge: HAIR LOSS.  For me personally, I was scared of having long strands fall out in chunks so I quickly made the decision to buzz it.  It was liberating!  The best part was I still felt like me.  A little eyebrow pencil, a couple coats of mascara, and the few other makeup products I use quickly gave me back the feminity I needed to feel.  And wigs!  Thank you God for the creation of wigs.  However, baldness of the face is a whole different ballgame.  It will be another emotional, low point on this journey.  A bald head often signifies cancer.  A bald face just plain says “I’m sick.  Really sick.”

Have you ever tried to draw eyebrows on bare skin?  It’s not pretty.  Or try to put eyeliner on bare eyelids.  Ouch.  It sucks, and it doesn’t look pretty either.  You feel vulnerable, ugly, and exposed.  I posted this photo of myself to show you that it’s ok to bare your baldness.  If you don’t want to, that’s ok too!  It is your journey. If you’re married or with a partner in life, he or she will see you at your worst and have to choose to love you through it.  I’m left with four significant scars: one on my chest where my port cath has been implanted, one in my armpit where the 5 cm mass was sugically removed, one on the side of my ribs where my chest tube kept my left lung from filling with fluid for three days post op, and one below my left breast where the surgeon used the Da Vinci Robot Surgical System to avoid a sternotomy.  Your worst won’t only be seen physically, you will ride an emotional roller coaster.  

I have had weeks where I haven’t left the house, or days where I couldn’t bring myself to change out of my pajamas.  I’ve had days where I’ve laughed, hung out with friends and family, even gone scalloping or rode on the back of the motorcycle, where I’ve felt completely normal again.  And then there have been days where I’ve cried and had the poor me’s.  All of it is part of the process and is nothing to be ashamed of.  Also, the very best part is all of this will pass.  What I’m learning to accept and understand is how I will live with life after remission.

This may sounds crazy to some of you, especially if you haven’t lived through it, but the fear is very real.  Do not take this the wrong way.  I am and will be forever grateful that I was one of the lucky ones.  By that I mean I was given a treatable cancer and a positive prognosis.  I am not dead.  I am alive and men, women and children all over the world sadly can’t say the same.  The last thing I want to do is minimize the grief a family must endure when their loved ones are gone as a result of this deadly disease.  So, I will live on hopefully learning the coping skills to deal with everything that comes along with it. Someone told me months ago, who had gone through cancer treatment and beat it, that life will never be the same.  For the good and the bad.  

The good is that it has brought me closer to those that matter.  Those friends and family who have been there in some way, shape, or form throughout my battle.  Cancer also has a funny way of showing you who you can count on and whose intentions are genuine.  You will always remember who was there and who wasn’t.  Plain and simple.  I understand it’s hard to know what to do when a loved one is facing a battle, whether it’s death, disease, or some other form of tradegy, but I’m telling you.  Just reach out and be there.  However awkward it may feel or however much you don’t know what to say, just reach out and periodically tell them you’re there and you’re thinking of them.  It truly means the world.

This person that told me life will never be the same is referring to what I call the “black cloud.”  He told me after beating his cancer, he never woke up NOT thinking about it.  There was never a symtom that arises where he didn’t fear that his disease has returned.  For me I haven’t quite lived this yet, but I will be as open and honest about how I’m feeling present time.  I’m 31 years old and have had cancer.  Is it likely I’ll go my whole life without it again?  It’s POSSIBLE, but not PROBABLE.  I obviously have this “cancer gene” so does that mean my life is tainted?  That thought terrifies me.  One single diagnosis, one single experience can have that kind of power over your thought process.  Even thinking one step at a time.  I’m fearful of not having a clear scan in September.  It will be my first PET scan since my diagnosis in March.  Will I be declared officially in remission?  And what about the 6 month scans that I will have to do for the rest of my life?  Will I live in constant scanxiety?  Just know if you are going through this, or have lived this, you are not alone.

All of this is new to me and I unfortunately do not have all the answers, and never will.  Ultimately, how my perspective and feelings have changed is that I no longer have the worries about not meeting expectations.  Take that as you will.  Interpret it in your own way and implement it in your own life. Cancer or no cancer.  You have all felt that pressure at one point in time and it’s just not worth it.  You are good enough.  Treat others with dignity and respect, love and be loved, and simplify your life.  My own health and well being, and that of my loved ones are all that matters because without it, we have nothing.  I’m not there yet, but my biggest piece of advice is to live for today, because tomorrow is never promised. And F*** Cancer!

Cancer Changes You

A year ago I was beyond stressed out. I was ridiculous.  Unhappy with myself in every aspect of my life for some ungodly reason.  I felt inferior.  In comparison to what or whom I couldn’t tell you.  There I was 30 years old carrying an associate’s degree, to which I felt was an incomplete education, lacking a career, and falling far from par at the job I did hold as a stay at home wife and mom.  How pathetic I was.   Sad, really.  I focused on wanting what I didn’t have, or what I couldn’t have at the moment rather than all the blessings I did have.

Women are so hard on themselves. The wheels are constantly turning inside our brains.  We all do it.  Am I thin enough.  Pretty enough.  Likeable enough.  Do I measure up as a mom, a girlfriend, or a wife.  Do I make decisions with my child’s best interest at heart.  Am I present, truly present. Will I be pursuing my dreams or just working for a paycheck.  Is my house clean enough or is my vehicle nice enough.  It just never ends.  It’s sickening to think that we may never be “enough” and we let ourselves believe it to the core.  

Anxiety will destroy a person.  It will control every aspect of their life, slowly sucking the life out of you.  Trust me, I was there.  Cancer has changed my life, for the better, if you can understand that.  Anxiety no longer controls my everyday life because I have let go of having too many expectations. We all want to be the best version of ourselves.  Live in the nicest home, drive a badass vehicle, and have the perfect family.  I still strive to have all of these things and more but more so I just want to have control of my health again.  I want to wake up and not see the pain in my husband’s eyes wondering if today will be one of the “bad” days.  I want to play outside with my toddler and not have him question why mommy is walking funny because of the chronic pain I live with now.  I want it to not hurt when I go to the bathroom.  I want my friends to call me and not have to ask how I’m feeling.  I want to feel normal again.  I am so longing for the day when empathy outweighs sympathy, caring overshadows fear and worry, and I am surrounded by much more laughter than tears.  For me it starts now.

Cancer changes you.  Cancer changes your family and your friends, anyone who’s close to you for that matter. Cancer changes your everyday life. And it changes your will to live.  I appreciate what I have more than ever and who I have walking beside me on this journey.  Cancer doesn’t discriminate.  It doesn’t care what job you have or what kind of degree you have.  Cancer only cares about the fight you have inside.  The burning desire to live and not fall prey to its deadly hold over you.  We all face adversity in our lives, some are just more serious than others.  It’s not necessarily what you may be facing, but more about how you handle whatever is in front of you.  So I’m going to take this bull by the horns and laugh when I feel like crying.  Fight when I feel like waving the white flag and I’ll be damned if I give this thing more power than it already has.

Be happy with who you are, what God has given you, and where you are at this point in your life.  You’ll never get these days back and yes, the clock will continue to tick whether your happy or miserable.  Who gives a shit if things jiggle that aren’t supposed to.  Wear that bikini and hold your head high.  If someone doesn’t like you for the person you are or the neighborhood you live in, screw them.  You didn’t need them anyways.  If you continue to walk around plagued by unfinished goals,  the things you wished you did but didn’t, then make it happen.  And LOVE.  I mean love the hell out of those who mean the most and be loved.  RECEIVE love.  This is by far the most treasured gift you will have in your lifetime.  Focus on that.  Because if or when you ever find yourself faced with a life changing event, you’ll be quickly reminded that it’s really all that ever mattered.

Wiggin It

cropped-img_6095.jpgI’ve never defined my beauty by my hair.  Let’s face it.  My hair has never been anything more than just “nice”.  Funny how quickly thoughts change when you’re staring back at the balder, paler version of the feminine reflection you used to see.  I turned 31 on a Tuesday, and by Wednesday evening I was a product of my diagnosis: Lymphoma.  Hodgkin’s Lymphoma.  You bastard.

I cried.  And when I say I cried, I waled like a hysterical fool.  You may as well have told me I had 6 months to live because in those minutes of Doctor to patient counseling, I felt deathly defeated.  I will probably hang on to those words for the rest of my life.  YOU HAVE CANCER.

“What the f***”, I screamed as I held my husband.  I’m not sure who was shaking more at that moment although it really didn’t matter.  I knew we were in this together and in that earth shattering moment, I strangely felt happy at the same time.  Happy to know that I had a partner in this.  How could I stay sad.  I was lucky enough to have a spouse, a best friend there to ensure I never felt alone.  The strongest person I know who wouldn’t let me fail, or let me be weak, for he’s been through hell and back to rebuild this family from the ground up to not let a little B named Cancer get in the way.

So that brings me back to the hair.  Me, wanting to actually feel in control of my body [who seemed to be doing her own thing the last 3 and a half months] shaved my head.  Screw you hair, and screw you Cancer.  I fell mesmerized by the sound of the clippers as I flipped the switch.  They seemed to purr at me creating this overwhelming calm.  As I put the blades to my scalp, I pushed through and watched the strands fall to the bathroom floor.  And again.  And again.  Until I was full on GI Jane style.  It was exhilarating.  I couldn’t help but smile and giggle, but this high wouldn’t last long.  Soon the tears would return when the realization occurred that this in fact was my reality.  My hair wasn’t growing back in and I would be forced to live bald for a good year.  Ouch.  It hurts again.  BAD.

That feeling sucks.  Being happy is so much more fun and anyone who knows me knows I love to smile and laugh.  So, this is when I introduced myself to Wylene the Wig.  I named her this evening since she’s going to be such a huge part of our lives for the next year or so.  Wearing her makes me feel alive again.  She singlehandedly gives me back my dignity, my desire to feel girly, and my confidence to walk through a grocery store incognito to protect against the looks, glances and stares that say “oh, she has Cancer”. 

Cancer has so many faces.  My wig is only one of these faces.  Meaning, just because I love how I feel when I’m wearing Wylene, doesn’t mean I hide from being bald.  Bald IS beautiful, but it is so much more than beauty.  Bald signifies strength and resilience and bald is the hand I was dealt.