The Little Tumor That Could, Might, But Probably Doesn't Exist

HELLO.  I hope you are all enjoying the Christmas season which I guess has already started even though it is not yet December.  I write this as I watch the SNL Christmas special on TV...I can only assume that we have moved Christmas to an earlier date.  So.  You are all invited to my Christmas Eve party on December 10th.

Anywho.  Now that I have gotten good news regarding my initial cancer, I have been busy diagnosing myself with other cancers.  It is extremely hard to go from having cancer and having doctors make a huge stink of every little ache and pain...to having a simple headache and taking some tylenol.  It's an extremely weird transition and even though I am 3 years out of chemo and 4 years a survivor, I--to this day--suffer about 2 cancers per week.

This week is brain cancer and lung cancer.  I have a cough.  So naturally there is a golf-ball-sized tumor on my lung.  Forget about the fact that just last week I had a chest xray and it was clear.  It developed over the weekend.  Cancer is sneaky like that.

And then, of course, there is the brain tumor I have as well.  Originally, I thought I had a deadly case of mastoiditis (thanks WebMD), but then I realized that it was only natural for my bone cancer to travel to my head a week after my blood tests and scans.  I will keep you updated on its progress.

In all seriousness folks, for a cancer survivor, every little ache and pain is absolutely terrifying.  Especially when we aren't surrounded by doctors and nurses on a daily basis to tell us whether or not our fears are justified.  I still haven't quite gotten it through my head that the internet is not the proper replacement for a doctor.  But then...I would be in a doctors office every day if I followed my health concerns.

It's sad.  It really is.  Last spring, after celebrating survivordom at the Young Adult Cancer Conference in Vegas, I came down with bronchitis.  I remember walking through the airport barely able to breathe...panicking, calling my dad, trying to find my car, thinking I needed to get myself to a hospital pronto.  I went to the school nurse, who sent me to the doctors that day.  The doctor was in the room for about 3 minutes.  He looked at my throat, listened to my raspy voice, and prescribed amoxicillin...AMOXICILLIN?  When he left the room...I was dumbfounded.  I had a lowgrade fever.  I NEEDED TO BE ADMITTED TO THE HOSPITAL IMMEDIATELY, RIGHT?  Shouldn't I be scanned?  Blood drawn?  Finger pricked?  SOMETHING?

And then I thought...this is a milestone.  I should be congratulating myself.  Congratulations on your first normal-person ailment post-chemo.  Normal people have aches and pains from everyday shit.  They get headaches, they get stomach aches.  They get gas (although, let it be said and understood that gas is pretty awful). To go from being admitted to the hospital with a fever of 99 to being sent home with a fever of 100.3 is a weird phenomenon.

The key is to trust your instincts.  If you have an ache and pain that is persistent...if something is seriously, seriously wrong with your body...it will tell you.  It will compel you to get help.  By the same token, you can't ignore it...that's how the trouble starts.  And, as it was with me, if you have a doctor who doesn't take your pain seriously and wants to send you to physical therapy for a bone tumor...you have to advocate for yourself.  Know that everyday aches and pains will happen, but don't ignore them when they refuse to be ignored.  YOU are the only one who truly knows and understands your own body, so just be wise and take care of it.

And, my fellow cancer survivors, bask in your achievement, in your survivorship, and enjoy the fact that you are here to experience those everyday maladies that are not brain tumors.  Or lung tumors.  Or mastoiditis.

And don't go on WebMD, or you might just diagnose yourself with prostate cancer, as I did last year.

Thank you, and goodnight!

Jesse

PS. MERRY CHRISTMAS!!!!

Cancer and Chess...a Curious Combination???

 

Hello, hello, hello, my people.  I know it's been two weeks--I am sorry.  As predicted, those last two weeks of school before break were quite hectic.  We had our auditions for second semester shows, which are always stressful.  But...it ended quite well for me!  I found out shortly before I left that I will be playing the role of Florence in Chess!  Hurray! 

I am sosososososososooooooooooooooooo excited!  However, I didn't truly allow myself to get excited until after I got even greater news:

I am CANCER FREE as of yesterday!

 

On my first day of break, I trudged over to University Hospital, got an echo cardiogram, EKG, pelvic x-ray, chest x-ray, and lots of bloodwork, and most importantly a flu shot...and everything is GREAT! I am officially allowed to switch from being monitored every three months to EVERY SIX MONTHS, and it's almost time for me to be officially switched over to the survivor center!  The doc also went over some of the stats with us, and 90 percent of Ewings Sarcomas will have already recurred by the this point.  The curve for Ewings has a sort of "tail" as the doc calls it, where the chance of relapse sort of lingers at a low percentage for a few years...but regardless...I feel physically at my best, my kidneys are behaving for the time being, and I'm so thankful this Thanksgiving (I have trouble spelling Thanksgiving for some reason, like wtf?) 

 

Anywhoooo, after getting my clean bill of health, I just feel so wonderful!  It's Christmastime, I'm seeing my family, I'm cuddling with my puppy, and next semester I'll be performing in Chess with Point Park's Conservatory Theater Company!  When I saw my name on the list...I was overwhelmed.  I called my mom...and I could tell how excited she was, and then told me I didn't sound excited.  Which, of course, I was thrilled...I was just so afraid of repeating what happened senior year of high school...where I was cast as Charity in Sweet Charity, only to be diagnosed with cancer three weeks later.  I knew I had tests coming up, and while I wanted to let loose and celebrate, I felt like I still needed to keep my gameface on until this week when my tests were over.

 

When I began the drive home from Pittsburgh, I put on the Chess recording...and ten seconds into the prologue, I thought I was going to have to pull over.  I started crying right at the wheel, thinking about the girl sitting at home while everyone performed the musical, celebrated senior year, went to college without her...and then thinking about how far I've come...how wonderful it's going to feel to take the stage and sing...how I'm back doing what I love to do, and I'm healthy...

 

It truly goes to show you that no matter how low you feel...when you feel like you've hit rock bottom (and trust me, I have)...close your eyes, and remind yourself that eventually you will be in a better place, regardless of what that place is, or how you get there.  And that is a promise from me to you.

 

Happy Thanksgiving (sp?) Everyone!

Jesse

 





When It Rains, It Pours...and You're Like WTF?

So heyyooo.  I know everybody is aware of Hurricane Sandy, and the devastating effects it had on parts of NY and NJ.  It's a fairly simple procedure, rain and wind.  I don't need to go in depth--you've all seen the news.
 
Last night, as I often do (and by often, I mean---I NEVER EVER EVER TURN IT OFF), I was watching HLN.  I watch HLN in my sleep.  Literally.  It's on while I'm sleeping just in case I wake up in the middle of the night and need to pee and perhaps would like to hear some news.  It's an odd habit of mine.  On weekends they do HLN weekend mysteries where somebody gets killed and it's usually the ex-boyfriend or the husband who didn't get a prenup.  I find falling asleep to stories about serial killers soothing for some reason.  It gives me a sense of "thank god I'm safe in my bed and not getting killed by that serial killer."  I know it's strange but I don't consider myself typical.  I'm radioactive.  Ask my radiologist, he'll tell you.

But anyhoooooooo I got off on a tangent.  I was watching/listening to HLN last night as I counted out my six thousand pills, and Dr. Drew was talking to a woman who's life was turned completely upside down by the hurricane.  She was talking about how she just wanted everything back.  Everything she had before the hurricane, she wanted back--even the mundane, or the troublesome things like her bills, and the less devastating issues that plagued her life before.  And she said that everyone needs to be prepared.  Which really rang true for me in a lot of ways.

I know I've talked in this blog before about invincibility.  How we all, especially the younger generations, at certain times in our life feel like we're going to live forever.  Like we're untouchable.  And this woman on TV made a lot of sense. 

Now, I know that she was probably talking more along the lines of being prepared for national disasters and the like.  But I guess I took it in a more general way.  We all need to be prepared--even when it feels like everything is going perfectly--for hard times.  Because we will all come across hard times, some more difficult than others.

I remember distinctly, when I first came home from the hospital after my emergency admittance which lead to my first chemotherapy.  I had been in the hospital for a little over a week.  One day of which had been Christmas.  And when I pulled into the driveway...the first thing I thought was, "a week ago I pulled in to this driveway, and was crying because I'd failed my road test.  Now look at me."  I entered my house, and everything was completely different, and yet nothing had changed.  I went up the stairs, and was shocked when I reached the top, because I was wheezing, out of breath, lightheaded--and a week ago I had just bounded up the stairs as a regular annoying teenager.  It was that moment that I realized I didn't have the strength to face my bedroom.  I wouldn't go in there. 

I stayed in my mother's room, or on the couch.  I would send other family members in my room to get things for me.  I mentally could not face the evidence that I had once been a snobby little teenager who brushed her hair, slept in that bed, opened those drawers, watched that television--who cared only about getting clearer skin and the lead in the musical at school.  It was probably about two and a half weeks before I would really set foot in that room.

I wish I could tell you how I felt when I finally did.  I don't remember a lot of it.  But I do remember picking up the little oboe figurine and card on my nightstand that my mom and dad had given me two weeks before my diagnosis, after the All-State Band concert.  The card said they were proud of me.

But I wasn't proud of me.  Because the girl I was before that diagnosis was ungrateful and took everything for granted.  She never once stopped to think about how lucky she was, or that she needed to cherish everything now.

After the hurricane, I'm sure there a thousands of people feeling that same way.  With that in mind, and the upcoming Thanksgiving Holiday, remind yourselves of how absolutely lucky and fortunate you are.  What you're forunate for.  Who you're fortunate to have.  And tell those people.

That, my good peeps, is how you prepare for harder times.  It's not about sitting around wondering when you're gonna get yours, or when everything is going to fall apart.  It's about knowing what you truly have in life, so that you can hold onto those things even more when times get tough.

Today is the three year anniversary of the day I finished chemo.  You can bet I know exaclty who and what I'm thankful for.  How about you?

<3
Jesse

PS. No post next week, all.  It's gonna be a longgggg few days!