The Worst Thing You Can Say to Someone With Cancer

I receive so many positive comments and messages that provide me with the strength to endure some of the darkest moments of having cancer.  For these messages - I am eternally grateful. But sometimes, despite the best intentions, people say the wrong thing.  No one wants to be THAT person so what is the worst thing you can say to someone with cancer?

What strikes a nerve with me (and I'm sure this differs among people with cancer) is being told "miracles happen."  Ummmm what?!  Why do I need a miracle?  I need science.  I need medicine.  I need a great health care team.  But I do not need a miracle. 

Perhaps it's because we think of cancer as a disease that takes lives and therefore you need a miracle to survive.  There are SO many different types of cancer - some with awful endings but others with cures.  So before we pray for a miracle - lets see if modern medicine has the answer.  

 

The Signs and Symptoms

So many of my girlfriends ask me about how I knew there was something wrong?  What was the sign? or symptom?  In hind sight, could I have caught it earlier?

Such great questions!  As women we need to discuss this more.  We need to be open and honest so we can start saving our mothers, sisters, wives, nieces, aunties, friends, etc...

This is also so frustrating!  My symptoms were so unremarkable.  The most troubling symptoms was heartburn - really terrible acid reflux.  I took tums and zantac but maybe I had an ulcer?  I had just gotten married and wedding planning was likely one of the most stressful events in my life (more than my doctorate or my cancer diagnosis).  Don't get me wrong - I love being married and love my husband but planning a big wedding is SO not my thing!

My ONLY other sign was some mild bloating.  It didn't really come or go and wasn't affected by food.  It was just mild distension - like I had gained weight.  Which was highly probable as we JUST spent 2 weeks in Italy and Greece eating pasta and pizza and drinking wine more than once per day.  It was highly probable I gained weight.

I get asked about periods a lot.  Didn't they change?  More frequent?  Painful?  Sporadic?  I have had an IUD for several years so I haven't had a period in years.  It's wonderful but wasn't a clue for this diagnosis.  I have regular PAP smears which are all normal, because a PAP will only help diagnosis cervical cancer, not ovarian or uterine. 

There was something that did tip me off!  The mild bloating wasn't really alarming but when I touched my stomach and applied a bit of pressure, it was tender.  Such a subtle symptom but something that set me off to think - this isn't right.

As women, I think we need to listen closer for that gut voice, your soul voice.  That something that says "something isn't right here."  I've been an athlete my entire life so I've always been in touch with my body.  I'm also very self-aware so when something is off, I know.  Even for me - from when I started having mild symptoms to when I first saw a doctor, it was about 2 weeks.  I consider that about as fast as you can see a doctor for such non-specific, mild symptoms. 

I wish I could share a more obvious sign or symptom with you.  But that's just the nature of the ovarian cancer beast.  The signs and symptoms aren't obvious.  Their sneaky and subtle and this is why we loose so many brave and strong women.  The answer?  More research + more funding = better detection methods = better survival.

amydee [pharmd]

Just Hair

Loosing my hair is traumatic.

It started yesterday.  Not in clumps really (or at least not yet) just every time I touch my hair or run my fingers through it, 5 strands fall out.  My scalps hurts too, like the feeling you get when you've used too much hair gel then you try to move your hair around hours later.  It feel likes that every time I touch my hair.

People's reaction to hair loss is so interesting.  Many will say, "It's just hair, it will grow back."  Yes - it will grow back but come on...it's not "just hair."  We connect so much of beauty and identity to hair that it's SO beyond "just hair."  If you are really going to say that to someone then you better be willing to shave your own hair off.  I bet most people aren't willing...

Can I even pull off being bald?  I feel like for some women, this could be an incredible opportunity for a fashion statement.  Or is the shave head so 1990 grundge?  I suppose it doesn't really matter because I am about to find out. 

Unexpected bumps

You know cancer is going to be shit and cancer treatment is going to be even more shit.  But it's the unexpected barriers that really throw you. 

A port put under the skin in my bicep last week for future chemo administration, is surrounded by an enormous clot.  The good news - the port likely still works so it won't have to be removed.  The bad news - its swollen and hurts, feels a bit like dead weight, and I now take blood thinner injections daily for the next 3 months.

I have this little medical voice inside my head which tells me when things are going south but I don't always fully listen to it.  This was one of those times.  The signs just weren't that obvious and clear.  I was worried about my clot risk and considered doing something preventative (low dose aspirin - despite lack of evidence) but never did. 

Lessons learned.

I get it now

Before this, before all of this...when I was caring for people with cancer (as a healthy person) sometimes I did not actually get it.  By that I mean, I would empathetically listen to patients and understand their concerns and trials but then, full on, not get it. 

I struggled with appetite.  For me, this is disturbing.  To understand me is to understand my love for food.  Since birth - love to eat.  Now with zero drive to consume anything, parts of me are disappearing.  So when I had an urge to eat, Kraft Dinner of all things, I went for it.  Well, I married a PhD Nutrition guru - we don't eat KD. period.  Sooo 3 hours later I suffered some of the worse gut wrenching, intestine twisting, cramping I have ever experienced. 

Before, I would roll my eyes and say, don't eat KD when you go through chemo. Duh.  It's going to make you feel sick!!  I get it now.  You eat KD because you are happy you want to eat and you can eat.  Holding on to your disappearing self. 

amydee[pharmd]

Welcome!

Hey All - Welcome!

The plan is to write the good, the bad, and the ugly of being a cancer survivor.  This includes: surgery, chemo, mental health, family/community healthy....everything.

In times like this, we need to be real about the lives we are living so lets do it.

Thanks for reading along!

amydee[pharmd]