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