Fighting Breast Cancer

My parents flew home to Michigan.  My dad had to return to work and my mom had a few doctor’s appointments of her own.  Mom is going to fly out to Arizona again in a few days to be with me for my next chemo.  She will be staying with us indefinitely; until I’m better.

If I haven’t explained it before, I come from a very WASP-y family.  This means that we hide our emotions at all costs and pretend that everything is fine.  We avoid confrontation like the plague and never ask probing personal questions that are none of our business.  Understanding this, I’d like to talk about a very uncomfortable conversation that I just had with my father.  It went something like this:

Me:  “Hello?”

Dad: “Well, hi honey!  How are you feeling?”

Me: “Great Dad!  What are you doing?”

Dad: “I’m just sitting here in my chair watching Fox News.  They’re covering the war in Iraq.  I guess there was another suicide bombing over there.  The asshole took down about 15 people with him.  You should turn it on and watch this.  The restaurant that he walked into is completely destroyed.  Now they’re showing the family of a soldier that just got killed.  You know, that’s too bad.  The kid was young.  Now they’re cutting to Tony Blair and some speech he made about the war earlier today.  By the way, what kind of birth control do you use?”

Me: (not sure I heard right)”…..huh?”

Dad:  “The reason I ask is because there are some birth control pills that can cause breast cancer.”

Me:  “Dad, I know.  I appreciate your concern, but I’m not having this conversation with you.”

The funny thing about this is that I know it took all the courage he could muster to ask me this question, and the only way he could do it was to sneak it in while talking about the most manly thing he could think of:  The War. 

The tragic thing is that I never took birth control pills.  Dad thought he might have the answer to why I have breast cancer, but this is not the case.  I never used a contraceptive that might cause cancer.  Neither I, nor my doctors, know why I have cancer.

When I was younger, I saw an episode of “Leave It To Beaver” where The Beave cut his own hair.  As you can imagine, he did a terrible job of it.  When he asked for Wally’s opinion of his new haircut, Wally responded by saying, “Gee Beave; you look like you have the mange.” 

I look like I have the mange.  I have been rapidly losing more and more hair from my already military-like haircut.  So much so, my scalp is visable in certain areas.  Plus the hair that’s left is uneven and choppy looking.  Michael keeps telling me to go to the barber and have it evened out, but I can’t see spending money on a haircut, when I’m going to completely lose everything in about a week or two. 

I don’t want to embarrass him, though.  If it makes him feel better to have me looking more human than mangey-dog-like, I’ll get a damn haircut.

I’ve been making a diligent effort to go to the gym.  So far, I haven’t noticed that I’m slowing down that much.  When I go, I usually get on the elliptical runner for an hour.  While I exercise, I chant to myself and tell my body to make more red blood cells.  Over and over: “Make more red blood cells, make more red blood cells…” 

The times that I am most aware of the effects of my chemotherapy treatments is after the workout.  I’m so exhausted that I need to take a nap.  Exercising used to make me feel more energized.  Now it’s making me feel more tired.  Still, I’ve read so much literature about how exercising eases the effects of chemo, I’m determined to continue working out for as long as I can.

I thought for sure that my new hairdo would ellicit a few stares.  But, mostly people avoid looking at me.  It’s like I became invisible over night.  I look so different from my former self, that people I know don’t even recognize me.  I don’t know how I feel about this.  On the one hand, it’s nice not having to care about my appearance.  On the other hand, I don’t necessarily want to be invisible.  I’m not really sure why people avert their eyes when I walk by.  Is it because they know that I’m sick and they don’t want to stare?  Oh God.  Am I that hideous that people don’t want to look at me?  I must look like some kind of freak.

I can’t stop touching my head.  My hair is gone, for the time being anyway.  It’s so strange.  This morning when I took a shower, I reached for the shampoo first thing as I always do.  Old habits will die hard.  I scrubbed my head and noticed that millions of tiny hairs chased each other down the drain.  My hair is really starting to come out now.

Afterward when I was toweling off, I was pleasantly surprised at how quickly I can get ready now.  With just a quick towel dry, my hair is “done”.  Low maintanence.  I like it.  And, I’m nice and cool in the summer heat.

But then, when I look in the mirror, there I am.  Ugh.  I know that I can always get a wig, but the thought of having that on my head during the hot summer makes my head itch.  No, I’ll just ‘let it all hang out’ and let the world know that I’m sick.  And, if anyone looks at me funny, I’ll just give them the finger.

Tonight’s the night.  I’m shaving my head.

This morning started off ok.  I took my second dose of Emend and went to Mayo for my Neulasta shot.  I still felt really good. 

Later in the early evening, my family and I went out to dinner.  I was starting to get that achey feeling I got the last time I had Neulasta.  A side effect of the drug is that it causes slight bone pain.  For me, it causes a back ache and I can’t sit for very long.  Still, I was hungry (thank you Emend!) and as I bent over my plate of salmon, a big chunk of my hair fell into my food.  How appetizing.

I looked up and announced that I was going to shave my head as soon as we got home.  Michael was a little drunk and he was looking a little upset.  My mom looked like she was about to cry.  Dad kept eating and said, “All Right!”, very enthusiastically. 

As soon as we returned home, I went into the master bathroom and found Michael’s clippers.  Then I plugged them in an outlet in the kitchen and started hacking away at my head.  It’s not that easy to shave your own head without a mirror.  I ended up having to have my mom finish the job.

Soon, all my hair was piled on the floor.  (Are my roots really that dark?)  Michael was weeping openly and began stuffing my hair into a zip-lock baggie to keep.  This made me angry.  I didn’t want this hair.  This was cancer hair and I wanted to throw it out.  I knew what he was doing.  He wanted to keep something of me in case I didn’t make it.  He still doesn’t understand that there is no way that I’m going to die from this.  There’s part of him that doesn’t get it.  That’s okay.  I’ll show him.

I went into the bathroom to look at myself.  I look like my brother.  My mom shaved my head so that I have a military looking brush cut.  I basically have half of an inch of hair all the way around.  It looks so foreign; I look androgynous.  I’m surprised to see that I’m tearing up.  Why am I getting emotional over this?  I knew it was going to happen, but I’m just sort of suspended in awe of what I look like.  My head looks so small without all my hair and I can’t stop touching it.  It doesn’t look like me; it doesn’t feel like me.  But it is me.  This is what a person with cancer looks like.  There is no denying it now.

I go to the living room to introduce my dad to his new son.

Being self-employed, my husband and I have to pay for our own health insurance.  For many years, we didn’t have any insurance at all!  We figured that since we were so young and healthy, we would be able to pay cash for any health issue that came up so long as we had yearly check-ups and kept up with preventative measures. 

Then one day, an insurance agent cold-called us.  He spoke with Michael and tried to sell us a policy “for the self employed”.  Michael will listen to any salesperson; but he argued that it would make more sense to put the money that we would spend on premiums into to an investment account and pay cash for doctor’s visits. 

The agent came back by telling him that that was a fine arguement for a young man–young men have less health issues.  We needed to consider a policy because of me, he explained.  Women tend to have more unexpected illnesses than men.  So, Michael agreed and we signed a basic policy.

That was about 4 months before my cancer diagnosis.  We had never had health insurance and now here we were, after making 4 payments (about $1100), we were at the Mayo Clinic and about to pile up a $500,000 bill.  At least I can laugh about getting one over on the insurance company.  Thank you God, for that insurance sales call.

Michael asked for a “Tragedy Policy” and now I wish we’d splurged and gotten the “Deluxe Policy”.  My medical bills are already beginning to pile up.  And my prescription coverage is pretty sad on name brand prescriptions.  The Emend that I spoke about in my last post?  Three pills cost $350.  My cut of that $350 is $280 (still worth every penny).  Every time I get chemo, it costs about $17K.  One shot of Neulasta costs about $5K.  All worth it, but my co-pay is 20%.

I’ve heard from other cancer patients and spouses, the stories about how the cost of treatment annihilated their savings and put them on the verge of bankruptcy.  I’ve looked into getting financial aid, but I don’t qualify.  I’m determined to get through this, not just with my health intact, but my finances as well.  I don’t know how I’m going to do it, but I will.