Time For One Of Romney's Sweet Little Lies To Get Us By

We have started the Sunitinib, my latest chemotherapy treatment.However, my doctors are concerned that it is not working because I seem to still have significant tumor growth causing a new bowel obstruction and a lot of pain.Regardless of whether or not this chemotherapy is working my doctors have decided that there are no other good chemotherapy options because of how they might affect my GI tract.Surgery is also no longer an option.Dr. Weldon feels as though the risks outweigh the benefits as surgery is dangerous with all of the scar tissue I have from previous surgeries.I am not eligible for clinical trials until I am off these pain medications and a number of weeks past this bowel obstruction.With that in mind, my doctors have switched their focuses to my comfort and pain control.

This past Saturday, I had my 14th surgey to implant a second, inintrathecal portacath. Dr. Birdie was the surgeon who performed this particular procredue because he specializes in solving pain-related issues through his knowldge of the human spine. This intrathecal access port sits on my stomach, but the medication is delivered to my spinal chord instead of my heart. It is safer than a typical port as it can be accessed for a much longer period of time -- as long as is needed to deliver pain medication into my spinal canal. This device is similar to an epidural, but even more effective

I already feel better from the pain meds, but I am stressed to be back in the hospital and dependent on other people.Even when I get home I will be dependent on other people because I won’t be able to drive while on narcotics.It’s also stressful to be out of treatment options.

Whether or not I am in the hospital or at home I need quiet days to reduce my stress.Please don’t be upset if I don’t want visitors some days.It’s more difficult to heal mentally then physically right now.Thank you for respecting that.

 

Friday Night Bites!

After a difficult 3+ week stay in the hospital, I was finally deemed well enough to go home and recover in the beautiful fall weather. My recovery in Children’s had been focused on resting my GI tract and resulted in hospital-induced anorexia, so my appetite was/is certainly not 100%. However, I am grazing on small amounts of food and definitely trying to keep up my fluid intake. The pain in my abdomen has been much better – my partial bowel obstruction appears to be resolving itself.    

It was really great to be back in my own house after such a long time, and I was so happy that I was finally able to spend time with my siblings. Rae and I made homemade apple sauce for the first time which turned out to be absolutely delicious, and was the first food my tummy kept down! I would say Alex let me help with some of his Math homework, but in reality he gave me a refresher lesson on dividing polynomials. I know most everyone is a bit sick of school by now, but I love learning and miss taking classes! Nicholas and I spent the majority of our time together catching up on Friday Night Lights episodes, which is our family’s new favorite TV series. Unfortunately, I didn’t feel well enough to go out with friends and I noticed myself to feel worse as the days continued through the week. This past Tuesday, pain in my back brought me to the ER and I was admitted to get things under control. 

My back pain is difficult because it hurts when I stand, yet when I am sitting my back never feels properly supported.  I first noticed the back pain this past summer and it had been getting progressively worse in the hospital but I figured I just needed to sleep on my own mattress. Unfortunately I suppose that wasn’t the case.  The doctors are still trying to find the source of the pain.  I’ve had X-rays, CT-scans and I am on the waiting list for an MRI.  My pain medications have been adjusted several times and I think we’re getting close to a comfortable dose that I’ll be able to head home on.

Finally, my GI obstruction has healed enough that I can start my next chemo treatment.  The chemotherapy I’ll be starting tonight is called Sunitinib – it’s an oral treatment that works to stops blood flow to the tumors so they cannot grow.   I have wanted to start a new treatment as soon as possible because my most recent scans show that a number of new tumors have shown up in the time I was healing and my last treatment stopped.  Old tumors have grown in size as well.  This will be my fourth chemotherapy treatment.

I’m currently feeling well, drowsy from the pain medication and a little sore on my back of course, but well all the same. As soon as this pain is put under control from an oral dose of medication I will be able to return home. Thank goodness, because I wouldn’t want to miss Halloween J I hope everyone is enjoying the new school year!

No Rest For The Weary

I’ve been in the hospital for 10 days now.   I’m making slow progress, but I have a lot of nausea and feel pretty miserable for the good part of each day.   The plan is to wait for my intestines to improve, on their own with rest, and the doctors are hopeful I can avoid a risky surgery.    Please understand that I am not up to having visitors and probably won’t until I am better and home.   Thank you to everyone who has sent me well wishes and your positive thoughts. 

Popular In All The Wrong Places

I’m happy to say that my latest chemotherapy of gemcitabine and taxotere worked to keep my tumors stable.   Unfortunately my body is not tolerating it very well and the side effects are becoming increasingly more severe and dangerous with each cycle.   I was hospitalized last Friday with a bowel obstruction and have not been able to eat or drink since then.   The reason I cannot eat or drink is that the doctors want the inflammation in my bowel to go down.  Earlier they were concerned I would need surgery to resolve this, and the doctors do not want to do surgery because the scar tissue from previous surgeries makes it difficult and risky.  They are hoping that things calm down on their own once I get farther from the last chemo infusion I had.   

I’ve already told my doctors I don’t want to do a third cycle of this chemotherapy.   That means I will have to try something new or perhaps a clinical trial.  I know it’s risky to come off of a chemotherapy that is working at this point, but I refuse to believe that there is no other chemotherapy that will give me the same results without causing a life or death situation every three weeks.

On a more cheery note, I participated in the Jimmy Fund Telethon last week and it was both fun and a privilege to be a part of such a great cause.    I was interviewed a few times to tell my story and was also invited to meet with Redsox players and watch the games.   Everyone was very nice and the Telethon was a success, raising over three million dollars.   Thank you to everyone who listened and contributed.

The Summer of the Traveling Tumor

This summer my family and I took a vacation in Grand Cayman for my “Make A Wish.”    It was the first time my tumors and I had ever parasailed, jet skied or snorkeled with sharks.    We also swam with sting rays, did some shopping and fishing.   It was an action packed week.   Did you know that the legal drinking age in Cayman is 18?  Neither did daddy. :)
Unfortunately, the reason I had so much energy was that my cancer had reoccurred and these new tumors were over-producing adrenaline.  Fiddlesticks!   When we returned home I had routine scans that showed three new tumors, including one in my original tumor bed (OF WHICH WE JUST RADIATED!) 
These tumors grew really quickly considering hey they weren’t on my scans just ten weeks ago when I last had surgery!  I started a new chemo regimen last week. It’s a 21 day cycle. At the end of July I will have new scans to see if this chemotherapy is working. Whether or not it is probably won’t be clear because three weeks is a short period of time, but we need to see some stability or shrinkage ASAP at the rate these suckers are growing.
I also have a meeting set up with a new group at Dana Farber to discuss tumor profiling and clinical trials. Although I already tried tumor profiling at the University of Michigan and it was unsuccessful, the tumor profiling at Dana Farber takes a different approach and anything is worth trying. In short, tumor profiling consists of doctors analyzing the DNA of my tumors and looking for known gene mutations that have been seen in other cancers. This leads, hopefully, to treatments associated with those mutations. This would point me towards a treatment that should work instead of trying more random chemotherapies. Clinical trials are new drugs that are being tested before they are FDA approved. There is some promising research being done and it may make sense for me to look at these as well. In the case of joining a clinical trial, I would become a human guinea pig and I mean maybe some magic will happen, who knows!
I know this is a bunch of information that sounds mainly negative but I feel exactly the same as I did ten weeks ago, which was and is perfectly normal. I hope everyone is having a great summer!

Team Tepper Tie-Dyes the Track

We would like to thank everyone who made donations in support of our Relay For Life efforts.  The members of Team Tepper were able to raise over $6,500 and we were even recognized in a color photo on the front page of the Bolton Common!  Cancer research has resulted in many new drugs, treatments and clinical trials. Your donations help to make sure that we continue to progress towards a cure.  We appreciate all of your generosity and cannot thank you enough!

Love,
Team Tepper

My Birthday Wish

I am participating in the American Cancer Society’s Relay For Life because I want to make a meaningful difference in the fight against cancer.

One in every three people will have to fight cancer during their lifetime. What kind of odds are those? Before I was diagnosed I thought that only the older generations got cancer. The older you were, the higher your risk would be.  It was the luck of the draw, and if you got it you fought it. If not you recognized that being able to watch your grandchildren play out in the grass was truly by the grace of God himself.

Today when I think about cancer I recognize the young lives that are compromised with such a difficult disease. My generation. My friends. Erin, Lauren, Cassandra. It's unreal; their strength, their determination, their perseverance.   They fight every day both physically and mentally, hoping that one day there will be a cure and they can resume a normal life. Until then these grandparents, mothers, fathers, aunts, uncles, sisters, brothers, babies… are working far more than a 9-5PM.

It’s invisible, this cancer stuff. There’s visible evidence - hair loss, gray skin, sickness – but no visible cancer. That’s true. But there’s something more obvious we should be all looking at: Cancer. CAN-cer. The very root of the word that gives us so much despair is filled with hope. It’s filled with strength, determination and perseverance.

We can conquer this illness together, simply by donating a few dollars to the American Cancer Society. This money not only goes towards treatment for current patients but also further research. I would love for everyone to be around and walk the track, but in donating, you’ve become part of the team – a team with goals, killing cancerous cells with every step. We walk to remember, to fight, and to celebrate. We walk to make a difference.

Please join my team or make a donation to help the American Cancer Society create a world with less cancer and more birthdays. Together, we can change the odds.

Every penny counts! Bless you all.

https://secure3.convio.net/tacs/site/Donation2?idb=301255250&df_id=1009602&FR_ID=39779&PROXY_ID=26176810&PROXY_TYPE=20&1009602.donation=form1


Leah Tepper


Here is a link to my team page to see how we are progressing and also to join.
http://main.acsevents.org/site/TR?pg=team&fr_id=39779&team_id=1178770

ACHOO "God, Bless that man!"

Dr. Weldon removed my NG tube today.  I have an NG tube after every surgery to drain out the contents of my tummy until it can wake up and do its job! I prepared myself; focused on my breathing while he removed the tape that held the end of tube to my cheek. Once he removes the tape I had to guesstimate of how much time I would have to inhale my last crucial breath. As he pulled out the tube I was not able to breathe in so I like to have a deep exhale prepared. He then slowly pulls the NG out of my stomach through my throat and nose. Of course I then have to blow some schnaz out of my schnoz, thinking “God bless that man.”  I am so much more comfortable now. (And I REALLY want a raspberry Popsicle or two!) I cannot wait until I can eat again!

The swelling I had in my hand is also just about gone and I now have not complete, but more normal function.  It was hard having a claw for a hand. I’ll admit I knocked over my fair share of water glasses trying to use it. Cats really seem to have the non-opposable thumb thing figured out - I’m a bit jealous. Good thing Happy and Polly aren’t here to watch me embarrass myself! Dr. Weldon confirmed that the numbness and swelling was caused by the positioning of my arms during surgery. I kept the left elevated which seemed to do the trick.

Yesterday I moved from my hospital bed to a chair for the first time since that oh so pleasant, planned surgery Friday morning. It’s really more of an “I just did that whole three feet move from bed to chair with my over-protective nurse and five more hovering around and holding me up thing today.”  It really makes a lot of sense to have 5 nurses practically carry you from the bed to a chair so you can get exercise.   Ha, ha, but I really do appreciate how protective they are with that initial change of position because it can really strike a nerve, whether it means passing out or getting sick. The nurses up here are great.

My whole family and Rachel’s boyfriend, Matt, visited yesterday afternoon on Easter. It was so exciting to see everyone and I wanted to talk about so many things, but it’s hard to keep the attention span of six people while a) nurses are walking in and out and b) you are horrible at telling stories. I let them go about their conversations (that I doubt were any more interesting than my fantastic stories!) while Rachel gave me a pedicure. We conversed, watched TV and hung out. I was struggling to keep my eyes open at the end of the day, but I didn’t want them to leave! I wish I had been a more awake hostess. Mmm Hostess Cupcakes…

I took my first walk today.  I needed two nurses and my dad to help with my pole and lines while I walked.  My balance wasn’t great.  I felt like I was walking with those silly drunk goggles on that they give you in the 5^th grade D.A.R.E. program.  I was going too fast and my entourage was struggling to keep up with my pole and IV lines.  On my trip I ran into a nurse/friend Jamie.  She had seen me when I first came into the ER on Thursday and I was in pretty poor shape.   When she asked what was going on I filled her in.  One lap turned into two because I’m really bad at telling stories.  .

I’ve been flaunting the gifts that Nicole gave me to everyone who comes in my room and I know 3 or 4 of the nurses will be buying the ‘Baby Lips” chap stick.   I think I should be an official spokesperson.    My lips are now 77% more supple and 94% better moistened.    Jealous?!

No Sleep for the Wicked

On Thursday at 1:00 PM I was driving myself to a weekly appointment when I began to feel severe abdominal pains.   They were so bad that I considered calling mom and dad to pick me up, but I finished my appointment and drove myself home.   By the time I got in the basement I was convulsing with pain and dragged myself up to my bedroom.   We thought it might be gas pains, but they didn't let up over the afternoon and by 4:00 PM I was throwing up more than I had in my entire chemo cycle this year.   By 7:30 PM I asked my dad to drive me into the ER at Childrens Hospital and we stayed there all night.   

They did blood work and took X-Rays, but didn't see the cause of my pain.  Luckily, my surgeon was on call that night and came to see me and requested a CTScan which showed a bowel obstruction as well as a cyst or mass near my ovaries the size of a softball.   Dr. Weldon told us that there were no other options, but to do surgery to resolve the obstruction and that they wanted to start right away.   By 5:00 AM they were putting me under with a raspberry-lemonade scented mask.  

The surgery took about 4 hours.   Dr. Weldon removed the obstruction, which was scar tissue from previous surgeries, and was also able to remove the cyst which he later told us was more cancer.    I woke up in the ICU to Alex, Nick and Rachel all trying to talk over each other in my tiny room.   Excited to see them I sat up and didn't realize I had a breathing tube that I was ripping out.  

I was in the ICU for one day and then they moved me to a recovery room for surgical patients on 10 South.   I have an epidoral for pain, a ng tube to drain my stomach and several iv lines.   Nothing new here.  Same as my other surgeries.  However, my left arm and hand are numb and not functioning 100% yet.   This happens sometimes because of how my arms were positioned during surgery.   I expect to be recovering for a week before I can go home.   

My anesthesiologist, Nicole, came in to visit me today and brought me a gift.  She's so nice!   She got me pink, purple and mint green nail polishes, nail polish remover and lip gloss.  We were talking about these things yesterday and she brought them today.  I'm really excited to use these with Rachel when she visits tomorrow. 

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.