The Not Hungry Games

I made it through my first week of this new chemo regiment.   It's nothing like the chemo I had last year.   Sometimes I even forget I'm on chemo.   I do have mouth sores and I've been getting nose bleeds and cripling migraines.  Come to think of it, I do know I'm on chemo.   Well, at least I'm not very nauseas.   Chemo changes your taste and smell.   For instance, last year I used to walk through the laundry room and small the detergent and think it smelled like strawberry pop-tarts.   I haven't had much of an appetite lately and have been forcing myself to graze during the day so I don't lose too much weight.   

I'm not neutropenic like I was on last years chemotherapy.   My blood counts are still good and my immune system is not supressed.  This is an out-patient chemotherapy so I am home and can go out with my friends.  Also, my mitotane levels have increased.   This is a chemotherapy pill I take daily.   The level is tested every few weeks and had been a little lower than we wanted to I increased the dose and am now, again, at therapeutic levels.  

I had voice lessons this Saturday and my teacher gave me a new song to work on.   It's "When She Loved Me" and challeges my range, but what I'm most worried about the song is breathing between lines.   Anyway, it's a very pretty song and should be fun to work on.

My Jimmy Fund trip to RedSox Spring Training in Florida was alot of fun.    Many of my friends from the clinic went, including one girl in particular that I saw the very first day I met my team of doctors.   She was there every day I was, in the beginning of my treatment, but that dwindled off and she is better now.   It was nice to see her again.   Meeting the players isn't what I look forward to, but I don't want to be surrounded by illness either.   And I guess that's good, because everyone else seems to feel the same way.   We all jump in the pool, shoot water guns, go down slides and eat like there's no tomorrow.     For the most part I think its nice for everyone to be out of their hospital rooms and homes and meet other teenagers who aren't asking questions. 

My favorite sister Rachel is back from Dubai and came home for a surprise visit this weekend!   We went with Nick deep into the forbidden forest where he was building a ladder to climb a tree.  I watched Rachel fish for weeds and found a snake.   Nick caught a bass and then we came home and watched Pretty Little Liars.   It was a grand old time.  

Here We Go Again

I used to laugh when my old friend from the clinic, Bob, told me that some kids come into Dana Farber already naseaus, anticipating chemo, but this morning I wasn’t laughing. It didn't exactly help that I'd only slept a few hours and been woken up promptly at 5:30 (Thank you Happy!) Of course some ativan and marinol pills did the trick. Ativan is a muscle relaxant and, in short, caused me to sleep through the majority of Session 2 Round 1 Day 1 of chemotherapy treatment.

One hour of hydration, Two hours of streptozocin, another hour of hydration and finally two more hours of Leucovorin.  A cassette pump of 5FU was around my neck when I woke up, to be given over 48 hours. That pump looks like a mix between a shoulder purse and a graphing calculator. I'm starting a new trend, this thing is super fashionable.

Mom, daddy and I left the hospy around 4:00 and arrived back at home around 5:30. By then I was pretty awake, but didn't want to bother Alex or Nicholas, so naturally I obnoxiously texted some friends telling them I wanted Java Chip ice cream STAT. I have great friends.

The chemotherapy hasn't kicked in just yet which is a good sign! I'm keeping my fingers crossed :) I was going to say I'm going to bed but I am having a huge Funyons craving right now... well there's always breakfast! Goodnight :)

T Minus 11 hours and 35 minutes

Dad and I took a quick trip to the University of Michigan to enter a tumor profiling program run by Dr. Roychowdry the Tuesday before last.    He was very nice and explained to us how the program works and that it will take four weeks before we have the results.   They now have tumor, blood and other samples ready to go.   Since we were there, we also met with Dr. Hammer to say hello (and update him on my progress too I guess.)   Peace an blessins y'all, peace an blessins.

The following weekend my family traveled to Long Island to visit my dad's family and highschool friends. It's been two years since our last family visit.  They've missed him - he's been a lone wolf out here in MA! I love going to Long Island, it's a relaxing vacation and everyone is really nice.  

I also started taking voice lessons.  My teacher's name is Lee and he's really nice.   He thinks I'm hilarious, which I am of course.   Anyway, it's lots of fun and I look forward to it every week.

I now drive a Toyota Hilander and am enjoying my new freedom.  

Tomorrow is my last day of radiation.  Yay!  I'm also going to visit Dr. Weldon so that he can switch my gtube to a button which will be a lot more comfortable for me.  Next week Dr. Place will set up scans of my chest to see what those lung nodules are doing.   If they've grown it's back to chemotherapy for me.  Otherwise I get a break.   Hoping for a break!

I apologize for the long break in writing, and the brevity in this post. Next to chemo, radiation truly is a cakewalk. They're very differfent treatments - radiation is so invisible. My hair is growing, I'm going to the gym, I can drive, and I'm back in my room upstairs. I'm still pretty worn out both physically and emotionally. I've resolved to sleeping it off in the hope that it will just go away as the effects of radiation wear off!

Pictures at an Exhibition

We met with my oncology  team for the first time since radiation started.   They were pretty happy with how radiation is going so far.    A week after radiation ends they will scan my lungs to see if my cancer is growing.   If not, I will get a break from treatments and be scanned again in 8 weeks.  However, if the cancer has grown or spread then I will start chemo treatment once again.    We're mainly looking at two regiments.   No one knows which one will work better for me and one has harsher side effects than the other.  I was originally leaning towards the chemo plan with less side-effects, but that one uses a medicne that is "black-boxed."   That means the medicine has caused serious side-effects in some patients and is no longer available as a medicine for some types of cancers.   Anyway, we still have some treatment decisions to make once my scan results are in.

Four to six weeks after radiation I will have a scan of my abdomen to make sure I have no new growth in that area.  They can't scan any sooner because the surgery and radiation have caused inflammation that would make the scan impossible to read.   I'm hoping that the radiation has killed any tumor cells that remained after my last surgery. 

Dr. Janeway said that a Dana Farber tumor profiling program for pediatric patients should open up in a few weeks.   This program will be running more tests on the tumors then the adult program so I am going to participate as a pediatric patient.   The Dana Farber program will analyze my tumor differently than the University of Michigan program so I want to participate in both and gather as much information as possible.   Hopefully, the information from these programs will help me choose the chemo treatment that will work the best.

Speaking of the University of Michy, we have a trip scheduled for February 13 and 14 to meet with Dr. Hammer and to sign paperwork necessary to join their tumor profiling program.    This will be a quick trip because I don't want to miss too many days of radiation.  

The night before the super bowl, I was praticing my tackling technique in case I got a call from the Pats when I felt a tug on my tummy.   Now this happens a lot, especially when I am sitting or laying down because I'm not paying much attention to the fact that I have a tube coming out of my stomach. It's just not something I tend to think about! So as per usual I ignored it until I felt my shirt get a little wet... then I realized my tummy tube was on the floor a few feet away. Might I add in that this is not the first time I've tugged it out? Whoops! My parents were thrilled that we got to drive into Boston six days that week instead of the normal five. The Emergency Room doctors couldn't fit the same size tube back in so we downgraded, but personally I wish we could have just left it out. (Of course I would immediately regret that decision the next time I feel a migraine coming on! And it's really just so attractive...but seriously take it out.)

The weekend of November 6th I attended "girls weekend" with other cancer patients from the Jimm Fund clinic and we had professional pictures taken.  Tonight was an unveiling of the portraits, and everyone looked absolutely gorgeous.    There were men in fancy shmancy black suits that walked around offering hors d'ourvres and drinks.  I got to see my Jimmy Fund friends who I don't see very often because we all live in different parts of the state (or in Lauren's case, Maine!)   It was a lot of fun and I can't wait to see everyone again at Spring Training in March! :)

As Dustin would say, "Get ready for the laser show."

I started radiation treatment on January 11th.   Every Monday through Friday, one of my parental units drives with me into Brigham and Womans Hospital in Boston.   My appointments are always around 11AM.  When I get there I scan my medical card at the front desk to let the doctors know I have arrived.   The therapists, unlike the nurses I've met in Children's Hospital, were initially aloof and didn't engage in much conversation.  However, it's pretty hard to keep me quiet and they were eventually forced to talk to me.   There are five therapists: Barry, Kevin, Tania, Rachel, and Christine.  They are all pretty nice.  Barry appears emotionless, but his playlists say otherwise. I like to listen to his iPod while I'm getting treated.

My parents and I sit in a waiting room complete with chairs, couches, a TV, snacks and beverages.   Eventually, a therapist comes to get me and takes me to the room where I get treatment.   I lay on a metal table.   First they take two xrays to make sure they are radiating the right parts of my abdomen.   The radiation machine rotates around my body and radiates from top and bottom.  The room is dimmed and it's fun to watch the laser on my tummy.   The whole treatment takes about 15 minutes.  It takes much longer to drive in and out of Boston.   In fact, driving out of the parking garage probably takes longer than my treatment.

We're thinking about another trip to Michigan.   They have an opening for me in a "tumor profiling" study that I would like to participate in.   What they would do is study the make-up of my tumor and identify any gene mutations.   They would then try to match those mutations to known medicines and chemotherapies.  This is a "personal medicine" approach where they try to determine the best treatment to attack my tumor with the least side effects.   Tumors constantly change and mutate so everyones tumors are different.  Even though two people may have the same cancer, one treatment may work for one and not the other.   Tumor profiling is very new and still being perfected, but it would provide me with information that could help with my next treatment.   They would need a sample of my tumor, blood and saliva.  Luckily, I've been handing out free samples from my last surgery so they are in luck!   Unfortunately, they need to see me in person to get started.  Skype won't cut it.  Thus trip 2 is being launched.

Loonybin Lovegood

Dr. Marcus (Luna Lovegood) said that I will now be starting radiation on January 11th.   After discussions with doctors at the University of Michigan, she has decided I will need a special machine that needs to be callibrated and tested over a weekend before I can start.    This machine will be able to distribute different levels of radiation to different parts of my abdomen at the same time.   That way I will get the maximum dose where needed and lower doses on important organs. 

On Wednesday I went in to Brigham and Womens Hospital in Boston for "planning."   During planning they scanned the area of my body that will get radiation.   They also gave me 4 small tattoos that will enable them to line up the machine in the same place every time I am treated (every M-F for 5-6 weeks.)   I got me some fine-lookin' tats. But no, they're not tigers or cupcakes. They are more like freckles.  

I'm told that each radiation session will just take 15-20 minutes.   I will lie down on an uncomfortable table, they will line up the machine with my tats, and then radiate.  

The results of my scans from Tuesday (MRI and CATscans) showed that I have no new growth in my abdomen, but I do have some new tumor growth in both of my lungs.    I now have 2 tumors in my right lung and 4 in my left.   They are all still relatively small.   The radiation will only help my abdomen, so after 5-6 weeks of that treatment I will need to go on chemotherapy stat to slow down growth in my lungs.  

Leaving on a positive note, I had some time to clean my room and it looks beautiful! 

Everyone be safe tonight.   Happy New Year!   

Instructions: Microwave Until Properly Radiated

Wednesday we met with Dr. Edgar Ben-Josef, an oncology radiologist that works with ACC patients. I got this question the other day so I'm just going to clarify the difference between radiation and chemotherapy. Radiation is killing cells in a particular spot of your body (there is machinery that can target a section of your body to kill those cells, both good and bad.) Whichever cells are radiated are killed. Chemotherapy, on the other hand, is poison that kills fast growing cells, not only tumor cells but also cells such as hair, nails, and white blood cells (suppressing one's immune system.)

Anyhow! Dr. Ben-Josef has had success radiating tumor beds of those with ACC to kill any microscopic tumor cells that may be left behind after surgery. A tumor bed is the area where one's tumor was before surgery. He also reccommended radiation on the three nodules, small tumors, in my lungs. He said that radiation could kill those tumors without having to go through another surgery, although anyone who knows me knows I love surgery because anesthesia is the best thing everrrrr.

The doctors don't want me to have many more surgeries because they suspect I have a lot of scar tissue as it is, which is a problem. They described the scar tissue as bubblegum that my surgeon (of whom I believe to be God himself) would be cutting through and not know where the gum ended. In conclusion they don't want God, aka Dr. Weldon, to pop my lung. That would be a bummer.

PLANS FOR NEXT WEEK:

Tuesday - Meeting with Dr. Weldon to see how well I'm healing since the last surgery. I'm also having an MRI and a CT scan to have a baseline before radiation begins on the 29th. They use these baseline scans to compare them to scans they will do later on during my treatment to see if the tumors have decreased in size or stayed the same size. That would mean radiation is working.

Wednesday - Planning session with radiology (It'll be a blast. My radiologist is like a grown-up version of Luna Lovegood.) I'll be getting three tattoos to line up the radiation machines so the radiologists can make sure they're radiating the same spot every time. My very first, and last, tats, WOO!

Thursday - Radiation begins! This radiation will be Monday thru Friday every week for five weeks straight. The side effects of radiation aren't quite as bad as chemo, but I'll progressively become sleepier with every treatment so I am apologizing in advance for not talking or texting or typing as much as I usually do.

We flew home from Michy today and it's so nice to not be in a hotel room, even though I think it was nice to get a break from my boring daily routine. I'm looking forward to the holidays because I got everyone really funny gifts. :o)

Happy 4th night of Hannukah, & Merry Christmas Eve's Eve!