"Making Optimism Our Soul Endeavour"
The Pamela Caglianone Foundation
About The Pamela Caglianone Foundation
On July 29, 2005, I was diagnosed with Burkitts Lymphoma, a rare form of Non-Hodgkin’s Lymphoma (NHL). I had just turned 39. I had been suffering from dizzy spells for several months prior, but no test could determine why. I had blood tests for thyroid, hormones and blood sugar, but got no definititive answers. The tests did determine that I was slightly anemic, which would account for my dizzy spells. But I knew something was wrong and I have never had a more real life example of "know your own body".
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What Me? Cancer?
In early June, I had a "spa day" with my sister and friend. I decided to get a bikini wax and it was the worst wax I ever had. The lady was pure torture and soon after that I thought I had an ingorwn hair. After I tried to get it out, I determined that there was nothing on the surface and this "bump" was under my skin.
I had been feeling like I was getting sick, so I went to my doctor for some antibiotics. I mentioned the bump in passing and was sent to get an ultrasound. I had been planning a trip to the Bahamas with family and friends for my 39th birthday; under the assumption that "no news is good news", I went on the trip. That is the last time that I will ever assume that to be true.
A few weeks later, I went to the gynecologist and mentioned to him that my last few menstural cycles had been painful. He did an internal sonogram and determined that I had a mass near my ovary. He thought an MRI was needed and called my primary doctor to consult with him on what to do. The results of the original ultrasound must have came back by then, because I was sent immediately to get a biopsy. I went the next day and found out that the two independent lumps that I had were actually one tumor. The size was 5 cm x 7 cm or a little smaller than my fist. I had to wait three days to get the results back from the pathologist.
My husbands family was visiting from Boston and we were going to Key Largo for a benefit concert. While driving in the car, I recieved the phone call from my doctor with the results; cancer. This was not a shock, as the surgeon who had done the biopsy had already told me he suspected it was.
Because there are over 30 different kinds of Lymphomas, we needed to find out what kind I had. The results showed NHL and they thought it was Burkitt's. No one at the hospital had ever seen that type before, so they asked permission to send the slides to Boston for a second opinoin from a Lymphoma Specialist.
From Diagnosis to Treatment
During that weekend in the Keys, I met a man that was an inspiration to me. His name is Paxti and he is a singer and musician, and had been diagnosed with thyroid cancer. A few years earlier, he had surgery that could have affected his vocal cords. But there he was, up there singing. I thought, "Wow, he had cancer and throat surgery and he's singing." I realized then that I was going to beat my cancer. I was not ready to go just yet; I had alot more I had to accomplish. He was an inspiration and we are still friends. You can visit his site and find out about his music and his work with the dolphins and ocean at www.paxti.com
Everyone was supportive of me and told me their cancer stories. While this was reassuring, I later found out that no two cancers are alike. Cancer is like snowflakes, but it is alot less pretty. All the information I had received was wonderful and served to inspire me, but unfortunately it meant nothing to my specific type of cancer.
The next few days went by very quickly, I had a PET scan to determine if there were any other tumors and we gatered information. I consulted with a doctor in Puerto Rico who specializes in rare cancers and was urged to get treatment as soon as possible. He referred me to a specialist about 45 minutes away from my home. I went to see him with the results of my PET scan and he confirmed everything and discussed the treatment for this type of cancer. Standard protocol calls for 8 rounds of aggressive chemotherapy. I would have to be hospitalized for my treatments because each round was 36 - 54 hours of chemo. The drugs would be alternated and would be injected into my spine.
The doctor kept talking and I just kept getting more scared. I had never been in the hospital before and now I was looking at spending a considerable amount of time at one. I was extremely glad that my husband and father were with me because there was so much information to digest. All I could think about was my job, my dogs and my volunteering. Who would do everything I did, if I wasn't there? Everyone accepts their diagnosis differently and many things run through your head when you are newly diagnosed.
I decided that instead of going home and coming back the next day to be admitted into the hospital, I would rather go in that evening. I didn't want to go home and think about it anymore -- I just wanted to do it. I was unbelievably unprepared and really had no idea what to expect. The nurses were all very nice and helpful. They became a great support group over the next six months.
I needed to have surgery to put in a port. This is a device that they place under your skin in your chest, so the doctors and nurses can draw blood and administer the chemo. Because I was on multiple drugs at the same time, they gave me a double port.
Treatment Starts With a Complication
I started chemotherapy treatments on August 5, 2005. I quickly blew up like a balloon, which the doctors and nurses attributed to the steroids they were giving me. I was also complaining of chest pains and pains in my left shoulder for about three days. I thank God my husband, Derrick was there with me, because my oxygen counts began to drop. That night, I starred in my very own episode of ER. The nurse said that she was going to hit the "CODE" button on the wall and there would be doctors of each specialty there within minutes. They determined that my left lung was collapsed and immediately, in my room, put a chest tube in to inflate the lung. Unfortunately, because I was so full of fluids, my lung filled with water instead of air. I was literally drowning to death, my biggest fear, right there in front of my husband.
They brought me down to ICU and had to drain the water from my lung. I remember them cutting off my shirt, and giving me forced air to breath. They sedated me and after that I don't remember much. I learned later that Derrick was thrown out of the hospital because he was yelling at the doctors.
When they brought me back to my room, I was connected to the wall via a chest tube; this was to drain my lung. It was only supposed to be a few days, but I was connected to that wall for almost 10 days. All the while, I was receiving my chemo.
This was my first experience in the hospital. While I was not very happy, I was responding well to the chemo. I was not getting sick; those anti-nausea drugs are truly amazing.
Living Through Chemo
After chemo, my blood counts would begin to dip rather quickly. I would be quarantined in the hospital, as well as at home under the watchful eye of Derrick. He became an expert on my symptoms and how the chemo would affect me. He knew that on day 10 my blood counts would start to drop and by day 14, I was at my weakest. After the second round of chemo, I needed blood and platelet transfusions regularly. At one point, we were on our way to the doctors office and I passed out on our front porch. He called 911 and I was admitted me to the local hospital for transfusions.
In September, there was a blood drive at my family’s restaurant, Southport Raw Bar. My new motto became “BE POSITIVE” because that is my blood type. There was a good turnout, where my friends and family not only helped me, but also saved the lives of others by donating their blood.
I usually went to the hospital wearing camoflauge shorts and a camoflauge bandana. I was ready to fight. I would go to the admissions desk and say "Ok, I am ready to check in". It was like I was going to a hotel. I had my bag packed with snacks and magazines. I was always talking to people in the hospital and at the doctors office and always had a positive attitude.
The specialist in Puerto Rico and my doctors here were working in conjunction with the protocol from MD Anderson Cancer Center in Houston, Texas. In October, I went to MD Anderson and met my doctor. Through my PET and CT scans, we found out that the main tumor was gone. This is when my doctors collectively decided, that I would only receive six rounds of chemo rather than the eight that were originally planned. I cannot tell you how glad I was to hear that; many patients are so weak by the end of the treatment that they actually die from the final treatment.
Throughout my treatment I had to deal with Hurricanes Katrina, Rita and Wilma. Because of these lovely ladies, my schedule was delayed to either fly to Texas or go in for treatment. I was often going to the hospital to receive transfusions with emergency lights only. The doctors office was closed and the hospital was working on a skeleton staff. Our house had no power, and we were trying to stay in hotels or with friends that had power.
Success Over Cancer
I had my last treatment was in December 2005, and as a Christmas present, Derrick started this foundation. The intention is so that I can help other people dealing with cancer.
After 18 months of clean PET and CT scans, blood tests and being pricked and prodded in 100 different ways, I am now in remission. My chance of the disease coming back is less than 2% and on August 28, 2007, I had my port removed.
Our goal with this foundation is to help children and families struggling through cancer. Your needs when fighting the disease are so varied - physical, emotional and spiritual. I was incredibly lucky to have such a great support system, but I know that so many people living with cancer don't have that. I want to help them make it through and be successful in their fight.
If you or someone you know is in need of assistance, please download the application and fax it to 954-524-3799.