A new hairstyle indeed!

I don’t remember exactly when this was but probably about a week after my first chemo infusion, I decided to cut my hair to help ease myself into the eventual balding that was to come!  My sister was armed with a comb, a pair of sharp scissors, and my permission to do practically whatever she wanted to my hair.  Being the nice and loving sister that she is, she exercised great mercy on my vanity by giving me a lovely shoulder length style. Thanks, J! <3

I had done some research on the internet, to try and find out just how long the chemo takes to mess with one’s hair.  Most of the info I found confirmed that it takes just about 2-4 weeks for the shedding to begin.  Just about 2.5 weeks into my (chemo) cycle I started noticing some hair loss.  I have (had) very thick hair, so shedding is nothing new to me.  Just ask “S”.  (SORRY!!)  A few hairs on the bathroom sink, a few on my pillow in the morning… no big deal.  A few days later, though, it started to get more stressful as it became more noticeable.  A bunch of loose hairs on my T-shirt, a receding part in my hair, dry, brittle hair that lost its shine…  This was not my hair.  I decided to take matters into my own hands, well, into the trusty hands of S and my sister.

On the night of Monday, 6/20/11, they took me through decades’ of hairstyles.  The 1920’s ‘flapper’ look, the 1950’s, German school boy look (that’s the proper historical term, of course)… all the way up to the 1980’s Mohawk!  Unfortunately, that didn’t turn out too well (stay tuned for photos…? Can you guys handle it?)  And then, I was bald.

6/11/11- The American Cancer Society's Relay for Life- at Ikea in Brooklyn

On Saturday 6/11/11, Ikea sponsored the American Cancer Society's Relay for Life.  I had been thinking about doing a breast cancer walk for a while, now, but somehow never got around to it.  This is the year, I decided.  I mostly wanted to do it to celebrate the fact that my grandmother and her sister were both survivors.  I found out that my sister’s place of employment had put together a team, so that made it all that much easier to participate.  My sister and I registered for the relay the day before I got my diagnosis, so while my initial intentions were to walk for my grandmother, it did feel rather empowering to be able to support the cause just one week into my own chemotherapy!

I just wanted to take a moment to thank all of the people who donated and/or came out to support me/the cause on that day.  It was a bit rainy and chilly but we still had a good time.  Thank you all, it really meant a lot to me! (Specifically, I want to thank my parents, sister, S.D., S, R.F and her little dudes: ETT and BLT, and…. who can forget M.F.P!)

6/3/11- This IS my hair. I bought it.

The next day, I had an appointment at the American Cancer Society’s office at Grand Army Plaza to try on wigs.

What a weird thing to have to do.

I woke up that morning feeling a little weak, but mostly fine.  I couldn’t really eat much but I carried around a huge bottle of water.  I should mention that was the day I awoke to my first side effect: A bunch of spots on my neck (acne).  Emotionally, I felt ok, until I took a seat in the office and noticed all the boxes of wigs around the room.  It really hit home, then, that I will actually be needed to use one sometime very soon.  Not all chemo medications cause hair loss, but my doctors assured me that the ones I am on do! (Sorry for the spoiler, but I’m bald as I sit here typing this entry.) The lady who worked there excused herself for a few moments.  My sister offered me a granola bar to which I responded by bawling and starting to hyperventilate. Hey, I have my moments!

The woman, C, came back into the room carrying so very many boxes…. of wigs… for me to try on.  At the time, my hair went down to about the middle of my back, so we had to figure out how to tie my hair back so that we could see what the wigs would look like on me.  She put a stocking cap on my head and we tried on a bunch of different styles of wigs.  Short ones, long ones, even a Tina Turner one (no joke.  She said she makes everyone try that one on for fun).  She handed me a longish, curly, black wig, so I put it on.  “Aw!” Said, C, “You look just like... Snow White!”  That was not what I was expecting her to say and it was definitely not the look I was going for.

To make a long story short, the windowless room was getting too stuffy, I was anxious, I hated nearly all the wigs, so I just settled for a shoulder length one that was very close to my own hair color.  Hey, it’s free.  I’ll worry about this stuff later on.

My dad and I dropped my sister off at work and on the way home I had my 2^nd side effect.  (WARNING- MINOR TMI APPROACHING) In a moving vehicle, I had to throw up. It’s funny how the medication works, because it somehow keeps me from feeling nauseous, but I still felt an odd sensation where I knew that I’d have to vomit.

The next few days, I mostly just rested at home.  On Saturday night, the day after the wig fitting, I started getting really sharp pains on my back and sides of my ribs.  These were very sharp, stabbing, pains.  Quite scary at the time.  I figured out a way where if I laid down on the floor and stretched my body, the pains decreased a bit.  This lasted for about 2 or so hours.   I later found out those pains were caused by the Neulasta injection as I mentioned before.

My next appointment was the following Tuesday.  I came armed with a handwritten sheet full of side effects.  I found out I had lost 8 pounds since the previous Wednesday.  Any other time, I would have been excited, but seeing as how this was only my first cycle of chemo, I was really worried.  On that day, I received my shorter, half hour long, infusion of Herceptin, which is just the brand name of “Trastuzumab” which “is in a class of medications called monoclonal antibodies. It works by stopping the growth of cancer cells.”

So, I get my chemo infusions once every 3 weeks… and during the filler weeks, I get a dose of the antibodies medication.

Finally… Round one, done.

6-2-11 An injection and not such a fun surprise

Less than 24 hours after the chemo, I’m back at the office.  Luckily, it’s just for a few minutes so that I can get my injection of Neulasta which boosts up my platelet levels that the chemo has just decreased.  It does so by making my bones release platelets through the marrow, or something like that.  I’m not really allowed to google these things, (I’m sheltering myself) so my knowledge is rather limited. On that note, I did, however, find out that the Neulasta is apparently made with E. Coli. Fun stuff!)

Since I was feeling pretty well these past couple of days, I figured I must be one of the lucky ones, so rather than go home, I went to the mechanic with my dad.  The nurses did mention that I should eat and drink before and after each of my infusions and injections, but I figured that since I don’t really have much of an appetite so early in the day, it would be fine to just pick up a bagel near the office.  I ate said bagel on the way to the mechanic, sat there for about 40 min.  As I mentioned before, I was very tense and anxious during that first week.  My throat hurt when I swallowed and it felt slightly difficult to breathe.  My mother suggested that I stop in at her office and have a check up with the physician assistant.  I was hoping that if she could tell me that my lungs sounded clear, my brain would follow suit and then I could finally relax.  That was the plan.

My dad drove me to my mom’s workplace and waited in the car out front.  I stopped in to say hello to some of the staff and to ensure them that I was doing fine.  Then, I made my way upstairs to see my mother who offered me some lunch, which I declined.  We were just about to head downstairs to see the physician assistant when suddenly I felt “weird”.  I remember telling my mom that I needed to just lie down on the floor.  She put me in her desk chair and leaned my head onto herself.  I felt dizzy and the day light shining through the windows seemed too bright.  My mother offered me a chocolate covered pomegranate which I didn’t take because it seemed too difficult to chew.  “You turned down chocolate?!” said my mom, “Now I know something’s not right!” 

The quiet room I had just stood in suddenly held so many people. Two physician assistants, one doctor, and several other staff members all stood around me as I sat in one chair and had my feet up on another.  My mother held a cold compress on my forehead and gave me some cold water; someone else handed over some mint candies.  I started feeling much better but felt so embarrassed that all these people were called on the overhead speaker to come tend to me.  This whole episode lasted less than 5 minutes, but I was pretty scary.  Let’s just say I learned my lesson and I always eat and drink before any of my appointments.

Chemo: Cycle 1 (Of an approximate total of 6).

Before this, all I knew about Chemotherapy came from watching movies and TV shows.  I distinctly remember the oldest brother on “Party of Five,” had to go through it because he had Leukemia.  On “Sex and the City,” Samantha dealt with breast cancer, as well.  They showed her having hot flashes and shaving her head.

I had no idea what chemo really was or how they administer it.  My biggest fear was that I’d be “that sick girl.”  You know, the one who is bald and has dark circles under her eyes and just looks skeletally skinny… My chemo is for preventative reasons, so I felt like all this was just so unfair!  Why do I have to go through all this if they were able to remove the entire lump?

Well, let me put you guys at ease.  Real life is nothing (ok, it’s just barely similar enough) to what they show on TV.  TV shows and movies play on our emotions to get their ratings.  The truth isn’t as exciting.

S. told me that he would take a couple of days off from work to come with me to my first chemo appointment.  My father (Super-dad who has driven me to EVERY single one of my appointments, thus far!!) picked us up and drove us to the chemo center.  S. is really good with the pep-talks.  He’s been keeping me grounded in reality.  Whenever my imagination or fears threaten to pull me away, he reminds me of how things really are.

So, that day (June 1^st, 2011), I was doing ok during that 15 minute car ride.  I watched the people who were walking on the sidewalk, going about their day as usual, while I was being taken to a place I’d never even imagined I’d have to go.  I took a deep breath to calm myself down.  I was ok.  My dad stopped the car in front of the center and told me to call him when I found out how long this session was going to take.  I’d heard that it could take hours for the chemo infusion.  Suddenly, it really hit me that I was in a car parked outside of a medical office where they’d do god knows what and fill my body with strange chemicals that have potentially nasty side effects! I felt like a prisoner who is forced to walk himself towards his own guillotine. (Ok, yes, I was being melodramatic… but that shouldn’t come as a surprise to anyone.)  I noticed tears forming in my father’s eyes when he realized that I was about to hyperventilate.  That scared me more than the chemo.  I didn’t want him to worry about me.  I was worrying enough for all of us put together.  I picked myself up, told him I was ok, gave him a hug and walked towards the center.

Once inside, my puffy, red, eyes told the receptionist that today was my first day of chemo.  She told me to take a seat in chair # 8.  This visit gets a little fuzzy because my heart was beating out of my chest and so many different people came to talk to me…   

Basically, the way it works is that when I walk in, they weigh me, take blood from the tip of my finger, take my temperature, and measure my pulse and blood pressure.  Once the blood test results come in (about 5 or 10 min later), they start the IV.  They won’t start anything until my heart rate is at or near normal resting levels. 

They give me some sort of saline solution (Sodium bicarbonate, I think)…and various other drugs to prevent nausea and some other things.  Then, they finally start with the first (of 3) drugs.  Each baggie is labeled with my name/date of birth/etc, and the nurse who is taking care of me that day asks me to confirm this information and tells me the name of the particular drug before she will hook the bag up to my IV.  I’ve been going there for 1-2 days a week for over a month now, and they still do this.  Can’t be too careful! In total, the infusion part takes about 4 hours.  They let the medicines drip at a slow rate so as not to overwhelm my body.

Once the first drug begins, about 5-10 minutes into it, I start to feel like there’s something heavy on my chest.  I get a little light-headed and anxious. (This explains why they have recliners for the patients to sit/lay down in.)  For the first 2 of my chemo sessions, at least, this part only lasts for a few minutes and then my breathing gets easier again.  Actually, that’s not true of the first session. I was very anxious, so it was hard to tell if the difficulty breathing was coming from that or being caused by the medication…  that lasted for about 2-3 days until I was finally able to relax.

I usually spend the time watching TV, reading a book or magazine, or talking to my dad... or the volunteer woman who always has a lot to say! When all the meds are done, the nurse usually asks if I’d like to finish the bag of liquids, which I usually accept, because it’s always good to be super hydrated.  I can never seem to drink as much as I’m apparently supposed to. Then, I get to leave!

A warning of sorts...

I guess this is the part where the story gets a little more graphic/detailed, so I need to warn you all that there may be some “TMI” (Too much information) enclosed.

 I haven’t fully decided just yet where I want to go with this blog.  In a way, I am writing this to keep my friends updated about my ‘adventure’.  I know that some people may feel uncomfortable asking questions or asking how I am doing.  I mean, you never know what kind of answer you’ll get when you ask someone about how they’re feeling. I figured if I write it here, those of you who are curious but uncomfortable asking can just read about it here anonymously.  That’s fine with me! 

I’ve also been thinking about people I don’t know…. If they manage to find their way to this blog, and they’re about to go through chemo themselves or have a family member or friend who is, it might be nice to read about someone else’s experience, so they’ll know what to expect.  In the latter case, these extra details would be very beneficial. Not all my side effects, thus far, have been terribly unpleasant… but some are just not fun to hear about (or experience them, but, yeah.). 

So, this is my ‘disclaimer’….  If you think you’d rather not deal with the personal details of my experience because that would be too awkward, I’d understand if you stop reading here.  But for the rest of you… here we go!