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.  

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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.” 

 

Chemo Isn’t for Sissies

My port has provoked many conversations with perfect strangers. One of which was with a breast cancer survivor who approached me in the water on Clearwater Beach.  She was so warm and compassionate we instantly bonded over our shared experience.  What she said to me has stayed over the last few weeks, “chemo isn’t for sissies, remember that.”  Well if that ain’t the truth, I’m not sure what is.  During my first month of treatment I had a few sick days, and neuropathy flare ups, but nothing that was unbearable.  Everything didn’t seem too terrible.  The past two Thursday’s, treatments number 3 & 4,  hit me HARD.  Probably even more emotionally than physically.

The drive home from Shand’s is when it starts.  The further we get away from the cancer center, the more depleted I feel.  It’s as if I can feel the poison slowly killing what’s left of my good parts.  Depression, anxiety, pain, sickness takes over my body and it is terrifying.  I wake up on Fridays even worse.  The room is spinning.  Did I have a little too much to drink the night before?  I wish!  The feeling is just very similar.  Lightning bolts of pain hit me through my feet, up my thighs, down in parts that shouldn’t feel pain, and stabbing sensations in my back and chest.  Can this be a good sign?  Is this working?  And what if it’s not.  Nope, not going to go there yet.

My oncology nurse shared her concerns with me in regards to my most recent blood panels.  I have been diagnosed as being “severely neutropenic” which basically means I am at a high risk of infection.  So for the remainder of my chemotherapy cycles I will be sent home with the neulesta injection pack on my stomach. The neulesta comes in the form of a small catheter that inserts in the fatty tissue of your belly and it is pre-injected and programmed to release medicine into your bloodstream 27 hours post chemo.  Once this is complete I have the ability to remove the pack myself.  Ouch.  And the side effects aren’t so pleasant.  Bone pain mainly in the hip area where your marrow is sent into overdrive producing white blood cells.

A couple weeks ago I went to sleep miserably on a Friday night and by 5 am I was sitting outside in the dark on my front lawn vomiting uncontrollably.  A truly low point on my journey.  This was the first time I truly felt discouraged and defeated.  I know I shouldn’t be hard on myself, I am only human, but that day I couldn’t shake the feeling of the “why me’s”.  I know by now to expect curveballs in life, and even hardships, but I just didn’t expect to be feeling deathly ill at 31 years old battling cancer.

Now I have good ol’ friendly depression knocking at my door.  I haven’t answered yet, but it is damn hard to ignore.  This is as hard for me to write as it may be to read, but there are times during this process where I feel as if I’m dying.  Of course I know logically I am not…I think.  I have zero energy.  Zero life behind the eyes that used to smile back at me in the mirror.  My skin is terrible and hypersensitive to touch.  When I run my hands down my body in the shower it feels scaly and old, that is when I muster up enough strength to shower and be presentable for the day.  I can’t even use the bathroom without searing pain up my rectum.  I can thank the fissure for that.  I can’t sleep without medication and once I’m asleep it takes everything I have to get out of bed.  Thank God for my precious child’s smiling face.  The chest pain and nerve pain is crushing.  I’m worrying constantly if it’s the medications weakening my heart, vessels or lungs or all of the above.  Surprisingly this may be a good sign according to the docs, if you can imagine that.  A possibility that the numerous masses in my chest are shrinking and the drugs are working.  Hallelujah!

I can’t stop eating.  And if that’s not hard enough as a woman in general.  Seriously the last thing I need right now is for all of my clothes to be screaming when I put them on.  I mean every hour, on the hour, if I don’t have food in my mouth I feel seriously sick to my stomach.  The kind of nausea that just pisses you off because IT JUST DOESN’T GO AWAY.  Maybe it’s a comfort thing, who knows.  Whatever works right?  I find myself counting down the days until my last treatment and it just feels so far away.  Here’s where I lose it.  Tears.  The kind of cry where you can’t catch your breath.  Ugly crying.  Just under 3 and a half months.  I can do this.  And then radiation?  I can’t even talk about it.

One day at a time, one treatment at a time.  My husband reminds me to get my head on right, “you have to focus on one obstacle at a time, one day at a time, or you’ll crack”.  I hate this.  I hate you cancer, and I hate you chemotherapy.  With cancer I die, and with chemo I live.  With that being said I will fight.  I will learn to love and appreciate the double edged sword of chemotherapy that will give me back my life while trying to kill me in the process.  People often make the comment, “I don’t know how you do it”.  Of course you do and I know this because you all would do it too. And if you’re going through it now, you will make it through.  It’s going to suck and you’re going to want to give up, but you won’t.  God doesn’t give us anything we can’t handle, so handle it!  It’s easy to be strong when it’s the only choice you have.  Remember that.