This Is My Story...

(Update Aug 21, 2008) Well, I may have spoke too soon!  I guess there was a reason why the treatments were 28 days apart. The first Treatment took about 2 weeks to recover.  I was dehydrated and fell behind on eating as well. I just finished the second round of my Bendamustine Clinical Trial and I will have scans in several weeks. My side effects were a lot less this second time around compared to the first round but definitely still there! I have 4 more rounds to go and should be done by December.  If anyone wants the details of my experience, please email me at information@hodgkinsfoundation.com. Stay strong and positive!

Please contact me at information@hodgkinsfoundation.com

The Beginning...

In October of 1993 I was living in Marietta, Georgia and was working as a waitress. I concluded that my sudden weight loss, low-grade fevers and night sweats had to be due to exhaustion. One morning when I was picking up breakfast, I noticed a lump on my neck. I asked all of my friends what they thought and they all assumed the same thing that I had - it must be a cyst. I was 23 years old at the time. I let it go for a few months and in February of 1993, after my weight dropped 15 lbs., I decided I should go to the doctor. I wanted to wait and go to New York, where I figured I would be able to see my mom and go to my family doctor all in the same weekend. So I flew into New York on March 3, 1994.

I went to see Dr. Horowitz that day and, after he listened to my symptoms, he scheduled a biopsy for me on Friday, March 4th. It was that quick. My flight back to Georgia was scheduled for the evening of Monday, March 7, 1994. Before getting myself ready for the airport, I went back to the office of Dr. Horowitz for the biopsy results. The first words out of his mouth were, "You are not going back to Marietta for a while". The biopsy showed that I had Nodular Sclerosis Hodgkin's Disease. I remember running to the phone in the office to call my partner in Georgia. I remember telling him I had cancer but not believing it myself.

That shock lasted for 6 months. That next week I had an MRI, CAT Scan, Gallion Scan and Chest X-rays to determine the stage of the disease and began researching oncologists. I went through about five doctor's offices before I settled with an oncologist affiliated with Mid-Island Hospital on Long Island. I moved back to New York temporarily, since this disease was 85% curable. The oncologist told me I would be treated with ABVD (most chemotherapies are acronyms) for six months, once every two weeks starting April 1994.

I lost my hair almost immediately and became violently ill for two days immediately following, then later approaching, each treatment. Ironically, I was more horrified at my hair falling out than the fact that I actually had cancer. I bought a wig, but was so emotionally and physically drained that I could do nothing but lay in bed. After four months of chemotherapy, I noticed another lump under my right arm. I went through the whole battery of tests again, only to find out that the ABVD wasn't working. I was referred to Memorial Sloan Kettering Cancer Center in New York City, where I met Dr. Andrew Zelenetz, the Chief of the Lymphoma Department. Dr. Zelenetz suggested that I have a bone marrow transplant, but after hearing so many horror stories I opted for another try at chemo. My doctor tried MOPP for two months just to pacify me, and then I finally gave in to a bone marrow transplant. 

On November 7, 1994, I went into the hospital for a bone marrow transplant. Since my own bone marrow was not diseased, they were able to remove it and then transplant it back into my own body. I was released six weeks later, ending with an additional week of TBI radiation. I will hold back from sharing the blood, bile, pain and suffering stories. You can ask me personally or go to links of my fellow transplant friends. The story is always the same and the horrific experience is all true. I swore I would rather die than ever go through another transplant again.

It was September of 1996 when the Hodgkin's came back. I was a fourth grade teacher at P.S. 34 in Manhattan (what a supportive staff...Thank You!), and I started to undergo chemotherapy that November. This time, I was given a drug called Gemcitabine. Luckily I did not lose my hair, which made it easier to go to work. By this point I had moved to New York City so that I could be closer to my friends and live a more fun and independent life. My principal at P.S. 34, Ms. Hutchinson, knew I was sick and was wonderful towards me. Fellow teachers would drive me to the hospital to get my chemo on Friday afternoons and I would recover over the weekend. My body was only able to handle the stress of teaching full-time and getting chemotherapy every two weeks until April of 1997. Dr. Zelenetz suggested I try another transplant since the first had given me almost two years of good results. Knowing that I would definitely lose my hair this time, I had a head shaving party at my apartment. (It made losing it a lot less traumatic).

The first week in June of 1997, I went back into the hospital for my second transplant. This time it was only for four weeks - I think mostly because I knew what to expect this time. After the initial puking, transfusions and sheer misery, I wanted to get the heck out of there as soon as possible. I forced myself to get out of bed in order to strengthen my legs (even if it was just from the bed to a chair). I forced my mind to heal my body as quick as it could and everyday, five times a day, I read from a poem my friend Jen gave me about strength. Recovery lasted about a year and a half, which brings me to my next battle.

It was April 8, 1999, when Dr. Zelenetz told me my cancer had returned for the third time. Here we go again. You would think this was a horrible day for me - actually, right after I left the doctor's office, I met Paul Peter Falbo,in Bryant Park where I met my friend Nicole to drown my sorrows. (Paul Falbo is now my husband!)

Having already gone through two transplants, I was in no rush to start treatment again, so I refused it until the pain of the tumor became unbearable. In September of 2000, I began a few cycles of the same drug that preceded my second transplant, Gemcitabine. No longer effective, Dr. Zelenetz explained to me the pediatric trial with thyoguinine and methotrexate. I had taken twelve weeks of it, bringing me to my results on April 12, 2001. I was told I would have six more weeks since the tumors were getting smaller.

I was able to have a 3 month break from treatment to get married, go on my honeymoon, and forget for just a little while. June 9, 2001, when I married my husband, was the best day of my life. Around October 2001, I started with Dr. Kevin Kelly and Dr. Owen O'Connor on a new trial called SAHA. I was on this trial for around 10 months and then took a bit of a rest. I returned to the trial for only a short time before I decided that the disadvantagaes of the treatment were more harmful to my body than the advantages. After going off the SAHA, I found myself back in the arms of Dr. Zelenetz once again, trying the CD-30, monoclonial antibody. This treatment was a walk in the park for me, starting from April 2003. There were no side effects that were in any way making me uncomfortable. The treatment was once a week for about six weeks with 2 months of follow-up. Technically the drug is cumulative for up to six months.

To make the next 4 years brief, I received MDX-060, TNX 650, and now I am currently on a phase 1/2a PDX and Gemcitabine clinical trial. This latest trial is the first day, 3 minute push of PDX and then the second day, 30 minute IV of Gemcitabine (24 hours apart). So far, so good. My biggest tumor that started out at 6cm x 3cm is now about 4cm by 1cm. The side effects are minimal, fatigue and low blood counts. The treatment is given 3 weeks on, one week off, for one year if all goes well. Today, October 18th, I am on my fifth month.