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.