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INTRODUCTION:  My Complete Change
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Last April, when I began writing about my personal battle with Hodgkin's Disease, I was focused on writing solely about my specific treatment and side effects. Part I and Part II were written in April 2000, when I too, like much of you are now,  was just searching for information about what to expect in the months to come.

In April, I was afraid to write about how Hodgkin's had affected my outside world and my internal emotions. In January, when I relapsed and revised this site I had an opportunity to review what I had written. As I read I realized all of the important things about Hodgkin's Disease that I had left out when writing before.

The first few months of having Cancer I never could have imagined that it would have changed my life in the way that it has. I had Cancer, and cancer has changed my life completely.

PART I:  My Diagnosis, Hodgkin's Disease IIIB
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I was diagnosed with Hodgkin's, or HD, on March 5 of 1999. Prior to any diagnosis, I was experiencing symptoms of high fever, night sweats, and loss in body weight. Before I entered the hospital, my body weight had dropped 15 pounds from the month prior. I found myself sweating around my neck area at night. In my case, I also experienced a loss in energy and an increase of heart rate due to a plural effusion of liquid surrounding my left lung.

My symptoms were more severe than most cases of HD because of my advanced stage. The tumors in my lymphatic system we re found in the mediastinum, between my heart and lungs. One of the tumors had grown so excessive that it had cut off the movement of lymphatic fluid in my chest, causing effusions to occur in my left lung and heart. My lung was completely filled with fluid when it was detected, and I had to have it drained and then hooked up to a chest tube for 12 days. The heart was drained by a needle while I was in anesthesia and was monitored by ultrasound.

Like many other Hodgkin's patients, my symptoms provided false diagosises from my doctors. One doctor believed that the heart palpatations that I was experiencing were due to a lack of something he called "Nookie." This same doctor also connected my neck rash to this similar lacking. I also saw a Phyciatrist, Ophthalmologist, Radiologist, and a cardiologist in the months leading up to my hospitalization. Amazingly, it was the cardiologist that spotted the swollen node with a simple examination. It was also the cardiologist that provided the diagnosis that would change my world. 

When I entered St. Jude's Hospital in Fullerton, I received a biopsy of a lymph node in my neck. From the biopsy, Pathologists at UCLA and the City of Hope were able to determine that I indeed had HD stage IIIB. From there I was sent from St. Jude's Hospital to UCLA Medical Center in Westwood by ambulance. At UCLA I was put into a room in the Mattel® Pediatric Oncology ward. There I spent the most precious week of my life. Hourly I was visited by doctors, interns, and nurses. I saw everything from Oncologists to Testicular specialists. By the request of my parents, my treatment plan was worked up by Dr. Nelson, a UCLA Pediatric Oncologist. My first morning I was sent to surgery to install a port-a-cath (or MedPort) into my upper chest. This nifty " nipple" is installed for the injecting of chemotherapy into the veins. Later that week, I received both of my first treatments of chemo. On Monday, March 15, I was released from UCLA Medical Center to my home in Fullerton.

PART II:  Treating, Coping, and Living with Cancer
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Treatment for IIIB Hodgkin's Disease includes six cycles of COPP and ABV chemotherapy, followed by radiation therapy. My treatments were given in six cycles which were 4 weeks respectively. Before chemo treatment, Neupogin (or GCSF) is given to increase white blood cell counts which are diminished during therapy. These blood cells help to keep your immune system strong, but they are completely attached during therapy. Neupogin is a very painless injection into the arm or thigh given for 5-14 days.

The first week of every cycle I received COPP. This is a combination of two intravenous chemotherapy's, one oral chemo, and Prednisone. Prednisone was a steroid that I took throughout the first three weeks of each cycle to increase blood cell count and to keep my body health. It is a very successful drug, but unfortunately it brings many side effects. For me, these side effects included a face rash, increased hunger & body weight, dizziness, uneasiness, and a hard time sleeping. The oral chemo associated with COPP is taken once a day for a week, and is called Procarbazine. This drug does include food precautions that may cause internal bleeding or dizziness. Please consult your doctor about the restrictions. The chemo that is taken intravenously into the port-a-cath is quick and painless, except for mild side effects of tingling and constipation.

The second week of the four week cycle I received ABV and continued Prednisone. ABV is taken by IV into the port. These medicines are more specifically Adria, Bleomycin, and Venblastine. Unfortunately, these injections cause many unpleasant side effects like nausea, cramps, and tiredness.

During the third week, blood cell counts are monitored, and when they drop too low, Neupogin is begun. On top of all of the chemo medications, I also received precautionary antibiotics on weekends. Blood was taken from me weekly, as is probably the case in all cancer patients to check blood cell counts. This is a somewhat painless operation, but it can be very unpleasant for some people.

In August I completed chemotherapy. That month I had my only complication, having a blood clot called a Deep Venus Thrombosis (DVT) in my left leg. This complication is very uncommon, and most Hodgkin's patients are at little to no risk of a clot.

Once my final cycle of chemotherapy was received I was sent back to UCLA to meet with the Radiation Oncologist to set up a radiation plan that would be most beneficial for me. At that point I was in clinical remission, but that made no difference in the amount of radiation I was going to receive because I was on a protocol. In mid-September I started mantle field radiation, lasting 13 days. The radiation totaled 2,400 centiGY, a relatively small dose. Side effects included mild nausea, pain and swelling, and heavy fatigue.

The whole radiation experience was pretty mild compared to that of chemotherapy. The heavy fatigue caused me to miss some school, but in general the treatment did not make me as sick as the doctors had expected. 

PART III:  Remission and Readjustment
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Throughout my COPP and ABV treatments of chemotherapy and radiation I was able to stay in school, keep up my grades, and I even finished the semester in the top %1 of my high school class! After the summer of 1999, I returned to school right on schedule in the eleventh grade. The fatigue from treatment wasn't so tough, and I was able to handle a full load of classes including leadership and journalism. 

That first few months back full time were rough because I was beginning to feel a little different than everyone else. I had never had those feelings before when I was going through treatment, but now they seemed to sink in after I had a summer to reflect on all that I had experienced. Cancer shook me from life to death, and in past six months I had been exposed to both the deepest meanings of life, and to the darkest flashes of solitude. My friends at school did try very hard to make me feel as comfortable as possible. They elected me Homecoming Prince, and supported my ventures to start a carnival/relay to raise money for Hodgkin's Disease research. These things helped me to build stronger bonds with my friends, and feel more accepted by my peers.

These months after remission were the greatest of my life. I had a newly discovered maturity and my social and religious problems didn't seem to depress me as I had remembered that they once did. It didn't even bother me that I was bald, and I felt confident and clearheaded in front of my peers. I wanted so badly to be normal. In my free time, all I would think about would be the future, and everything that I wanted to get out of life. It seemed like my life now had a path.

I made such big plans when I was in remission. In October I wrote a long proposal for my relay/carnival. I called it "Making Strides: Cancer Relay for the Kids 2000." My goal was to create an event that would bring the community together and show them that there is life after cancer for pediatric cancer patients, to educate them about childhood malignancies, to have fun, and to raise money for a great cause. In December of 1999 the Pediatric Cancer Research Foundation (PCRF) took support of "Making Strides," and agreed that with a vote of their executive board they would become the main supporter of the event. 

January 5 the board of PCRF met to approve my race and to set it on the schedule for June of 2000. Unfortunately they were unable to do so because I was absent to that meeting. Trust me, the only other place that you could have found me other than at that meeting would have been dead. Well, so how it felt as I lay asleep in the pediatric cancer ward of Mattel® Children's Hospital.  

PART IV:  Stabilization Chemotherapy
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It is a funny thing to think about: these past six months. Not a funny thing in the traditional sense, but in the sense that so much has changed and so much has become better as a result of the miserable hell of the last nine months of my life. I will try to express to you as best I can the mercy that comes in this disease, but most of what comes through in my writing is the horror of lymphoma. 

On January 3, 2000, I checked in to Mattel® Children's Hospital at UCLA. On the same floor, in a room very close to where I was first diagnosed...dejavu. Gallium scans showed a large mediastinal mass, and positive haze in the upper left lobe. I was set on a regimen of DECAL chemotherapy, followed by autologous stem cell transplant.

The DECAL chemotherapy was nothing short of brutal. For three months I was scheduled to receive treatments every three weeks. The treatments made me very sick, and were administered over three days in the hospital. For the first time, I was receiving blood transfusions of platelets and packed cells to keep my counts stable. The side effects of DECAL were heavy nausea and vomiting, fatigue, and overall sickness.

In the months following my relapse, another cycle of chemotherapy was added because of the discovery of malignant cells in the upper left lobe of my lung. I guess that haze turned out to be cancer. When I only knew I had disease in my lymph nodes, I felt confident of a cure, but these new finding caused me heavy pain and re-evaluation. For the first time in my life, I began considering the idea that cancer may kill me. 

The additional round of DECAL did nothing to decrease the cancer in my lung, so my medical team began questioning what was showing up in my lung. To clear up the problem, the docs scheduled a thoracotomy. Basically, I was cut open like a fish, only to find that what the doctors had first believed was true: there was extensive Hodgkin's in my lung. But there was still hope, and the medical team decided to stay on course and start the autologous stem cell transplant. A transplant that would be the final step in securing my remission.
 

PART V:  BMT, Radiation, and then the new me...
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PART VI:  On With Life.
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I can feel my self vacillating between lymphoma and life. In these past few months I have found my self right there at the port, right on the brink of watching my life set sail. My college application process took full precedence over the past months, focusing on college boards and letters of recommendation. I made an attempt to rejoin the varsity basketball squad at my high school after a 2 year hiatus, only to find myself with a broken foot three weeks into training. My doctors attributed the fracture the weakness of my bones, I attributed it to a weakness of my mind, making it so much easier to rejoin the team once it had healed. After a summer of working over time to finish my Junior year, I went back to school a senior only 5 steps away from Valedictorian. 

With the strongest side effect I was facing being  mild fatigue, I was able to return to my studies with very little struggle. Only several weeks into school, I received the Andre Sobel Award for Courage in the Face of Adversity for an essay I had written on tolerance. I was awarded with a trip to the United Nations in New York, where I was awarded at International Tolerance Awards in November. 

I felt the strongest I had in years when the news came that would send my life in a new direction, just as the same news had done two times before. In November, only three weeks before what could have been a celebration of Thanksgiving, I had a mediastinal biopsy and received my first treatments of Gemzar chemotherapy.

PART VII:  Unexpected Pathways
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Gemzar, known also as Gemcytabine, is a breakthrough cancer drug used initially to treat other forms of cancer that has shown hopeful results recently for Hodgkin's patients in Europe. The treatments are given once a week, and side effects are mild. I received several rounds of treatment in November and December of 2000, but my white cells dropped so low that I was unable to fight off infections or receive further treatment. In this time, the disease continued to grow into my left lung and Gemzar's efficacy proved to be low and almost non-existent.

These turn of events called for re examination of treatment protocols. My doctors, family, and I decided to go to a well known drug regiment called ICE, including three highly potent chemotherapy drugs. My doctor expressed strong fears about potential high risk side effects, but as a group we decided that these were the risks that we would have to take to get me back on my feet again.

I received two rounds of ICE before we got the news that I had a clean PET scan. Unfortunately, the scans also exposed a lump in my lower left lung presumed to be unrelated to the cancer. Urgently, I had my lung biopsied in the beginning of April with a thoracotomy performed by a cardio thorasic surgeon. The lump was a totally benign contusion, blamed to be related to radiation scarring. 

Through the months of intensive treatment I took a leave from school and began work with a home tutor. The big payoff came early this month when I received acceptance letters from Stanford, UC Berkeley, UC San Diego, Northwestern, and USC. I have made the decision to attend Stanford, although my arrival in Palo Alto will be dependent on my future therapies.

The teeter-totter turns again. After several months of intensive treatment, I find my self at crossroads over treatment. The general urgency to put the disease under control has subsided, but the fear of the lymphoma coming back with a vengeance constantly roams through my mind.

PART VIII:  Discovering "Hope"
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My cancer free honeymoon only lasted one week. As I came in to the hospital for a modified dose of ICE chemotherapy, it wasn't chemo that I received. What I received was the news that the cancer had quickly returned, and the aggressive response must be stopped. We discussed possible future treatments, and I expressed my concerns about the major possible complications of further treatment. That week I received high doses of Etopiside and my doctors made plans to have me seen at the City of Hope, a major cancer center in Duarte, California. It took me 4 weeks to recover from the Etopiside, including a scary case of Clubciella pneumonia. 

In May I received the greatest birthday gift that I could have asked for. But like providence, this gift came to me. Expressing concerns about the aggressiveness of my disease, several major medical centers had turned me down for a possible Mini (non-myloablative) transplant. But in that fateful day in May, Dr. Nademanee (Nade) of the City of Hope, gave me the confidence that there was still hope. Most kids my age go on tours of college campuses across America, looking for a place to fit in the next four years. The City of Hope was that place for me. I told myself in a stream of tears that I had finally arrived. I was home.

A mini transplant uses less toxic doses of chemotherapy or radiation to suppress the patient’s immune system and allow donor cell engraftment, relying on the new immune system, provided by a donor, to help fight the disease.

For the next several months, Dr. Nade put me back on a modified Stanford V protocol to try to preserve my body for transplant, while slowing down the progress of my disease. This more mild treatment allowed me to be able to attend my Sr. Prom and eventually graduate with my class. 

On June 14th I gave the commencement address at my high school graduation, urging my classmates to never take for granted the life that they have been given, and make the most of every day. That was exactly what I was doing those several months before my transplant, loving life and making the most of the new opportunity that Dr. Nade was providing.

In early July, while Dr. Nade was on vacation, Dr. Molina at the City of Hope took charge of my treatment. Fearing the progression of my disease, Molina placed me on an oral chemotherapy, hoping that new drugs would be more successful. Unfortunately, these new drugs led to the near downfall of my respiratory system, and the possible calling off of my Transplant. That month my Hodgkin's progressed significantly, and with a donor in place, the decision was all Dr. Nade's to call off my transplant or take a risk with my only opportunity for life without cancer.

PART IX:  Providence
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My life was at quite a cliffhanger. Nothing is more dramatic than real life, especially with what you see around the cancer ward. On July 27, 2001 I checked into City of Hope (COH). Before I could even be settled into my room, I was sent to hempoherisis center for a unique procedure called a red blood cell exchange. COH is one of the only medical centers in the country that does this simple procedure. For four hours I was hooked up to the hemopherisis machine, while my blood circulated out of my right arm, and returning to my left arm was new O type red cells along with the rest of my blood. This procedure was done in hopes of making me (B+ type) more compatible with my (A+ type) donor. 

For the following week I received Flodarabine chemotherapy, a standard transplant therapy, topped off by two days of Melphalan, a very potent transplant Lymphoma killing chemo. On August 3rd the treatment concluded and I received the donor cells. That night I was so in a trance that all I can remember was a long painless infusion of cells in two bags that appeared almost magical with many sorted bright colors sparkling in the moonlight. Call  me crazy, call me drugged, but it was then that I knew that I had reached my cure.

For the weeks following I became weak and experienced pain and sores in my mouth. By day 15 my soars were so bad that I wasn't able to swallow my own saliva, making it hard for me to breathe. Luckily, within a few days my counts started to show signs of recovery and, without an infection, I was transferred to oral medications and left the hospital two weeks later.

PART VI:  On With Life, Time Number 3
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Uneventful days highlighted the following two and a half months. Pushed by adrenaline of the promise for new hope I was able to stay quite happy going about my day to day tasks, occasional visits from friends, and the work on my general enterprises like the Violet Ribbon Campaign. Very encouragingly, I received a good two and a half months of positive progress. Because of the nature of my tumor, we still believed that once the cancer returned the new bone marrow would have the graft-versus-tumor effect needed to finish the job of placing me into stable remission. 

Several weeks past in November and the tumor increased in size and I began to feel the symptoms. Concerned with the progression of my disease, my doctor made the option of a small dose of more chemo followed by further infusions of the donor lymphocytes, better known as a DLI infusion. Other options included stopping all anti-rejection medication in hopes of speeding up the new immune system's fight against my body. Unwilling to change my resolve, and of course once again faced with the proposition of death, I made the decision to not receive the chemotherapy but just continue on course and wait for signs of graft-versus-tumor. I felt strongly at the time that the chemo would only make me sicker and might tamper with the potential of my new immune system. In the days that followed, my family and I made plans to, in a sense, readjust hope... accepting that we may be facing a diminishing quantity of my remaining days.

Well, I cant say it took more than 3 days before the GVHD hit. An irritating full body rash, dry eyes and mouth and, as we later discovered, sick liver, all hit me like a tornado the following week. I was hospitalized for the following two weeks as the medical team worked to put the GVHD under control with prednisone and the anti-rejection meds. 

The immune response was tuned on! Obvious signs of graft-versus-tumor came as the cancer symptoms diminished and the x-rays were showing an amazing 50% decrease in the tumor volume. We have awakened my bodies new ability to recognize the cancer as the invader. I remain confident that my medical team with be able to keep the anti-tumor response going, while as the same time controlling the body-debilitating effects of graft versus host disease.

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Today it was confirmed in the words of Dr. Nade as she compared my X-Ray film from Dec. 5 and Dec. 31, "This is better than ANY chemotherapy."

My miracle has come! If in only to prove to the world the power that can be unlocked in the human immune system. Humbly, I feel my life has great purpose.

So what's to be said about the torture of the past or the uncertainty that lies ahead? I lay in bed too ecstatic to sleep. I envision the unknown with fear of fungal infection and Graft-Versus-Host disease. Will there come a time when the killer immune system is no longer my ally?

Four weeks ago the world was preparing to say goodbye to Matt Terry. Little could they have imagined that in this new year of 2002 they would only be welcoming me home.