My Lymphoma Journey from 2007 until July 2008

FRIDAY, JULY 25, 2008 11:33 PM, CDT
My name is John and I'm twenty-six years old. I'm married to Kate and the father of Isaiah, two years old.
I'm a pretty big guy who played football in college. I love to eat and drink, and I put on a lot of weight, about 40 pounds, between when I stopped playing football in 2003 and my heaviest in September 2006. I can blame the gain on exercising less, gaining sympathy weight during my wife's pregnancy and when Isaiah was a newborn, and a general lack of movement while commuting an average of three hours a day. At that point I knew I had to make a conscious effort to lose weight. I dropped about 15 pounds before the end of '06 and was planning on dropping more.
Two things happened during the late winter and early spring in 2007. The first was that I continued to lose weight. I wasn't working out as often, but my wife and I had bought our first home. This cut my 2-way commute from about 3 hours to 45 minutes each day. My son had also started walking and running. So I attributed my continued weight loss to a change in lifestyle that included less time sitting in the car and holding my infant son, to more time at home running after my toddler.
The other thing that happened was that I started itching my legs. I would find myself showering at night after getting home from waiting tables, and furiously itching my ankles. It got to the point where I was breaking the skin and scabs started to form on my ankles and lower legs. It wasn't normal, but as a tough guy I shook it off like it was no big deal. So during the first half of 2007 I continued to lose weight and itch my legs, all the while feeling completely fine.
It June, 2007 I began coughing. I remember hacking up green mucas which I know is a sign of bronchitis. I get this type of cough once or twice a year and knew it would go away in a week or so. It went away for a period of time, but I started coughing again towards the end of June.
This cough was different though. I wasn't coughing up mucas, but it was a violent, dry cough. I thought that whatever infection I had probably wasn't cured and just came back. I worked through the cough and didn't make an issue of it. During the summer my coworkers constantly made comments about how I was losing weight, and I had no answer when they asked how I was doing it.
My family took a vacation to Florida in August and I felt great. Still coughed a little...still itched a little. But there were no other problems. When we returned my wife and I had dinner with my parents who hadn't seen us in about a month. My dad's a doctor and was worried about the cough and how I looked. Apparently I had started getting pale. My wife had been bother me about the cough after it didn't go away for about a month, and my parents wanted me to get checked out as well. My dad the doctor was worried I might have picked up TB. So I found a local doctor and scheduled an appointment in early September. Between this point and when I saw the doctor, two new things popped up. One was a rash that itched on my sternum. The other was night sweats. I began sweating through several shirts and needing to rotate pillows throughout the night. I didn't get much sleep.
When I went to my Doctor's appointment I told him everything that was going on, and he didn't really share anything with me. He ran a TB skin test just in case, but also sent me for a chest X-ray. This was on a Saturday morning, and I was able to get in for the X-ray at another location just before they closed at noon. The X-ray tech asked if I was having a hard time breathing after he took the image. I told him "No."
On Monday I got a call from my Doctor that a mass was found next to my lung. He wanted to schedule a CT scan as soon as possible. I called up my doctor father, who is not the type of person to wait around to do things. My father contacted my local doctor, and then used his connections at the University of Maryland to have my seen on Wednesday by Dr. Meisenberg at the Greenbaum Cancer Center. Dr. Meisenberg was a great doctor, and explained that I had a mediastinal mass that was most likely lymphoma. He believed I had Hodgkins disease because of my B symptoms(itching, coughing, weight loss, and night sweats). I had an "Aha" type of moment putting together all of my symptoms with what was happening inside my body.
After this meeting on Wednesday I was scheduled for a biopsy on Friday. It was crazy to me that I had just gone in for an appointment on Saturday not knowing what was wrong but not expecting anything too serious. The biopsy was fine. I had lots of support from my family and spent the night in the hospital. I spent that weekend resting with a lot of attention from those who were around me.
During the next week we got word that the biopsy was inconclusive. Another biopsy was scheduled for that week, and I went under the knife again at University of Maryland. During this biopsy they got a better tissue sample, but the pathologists at Maryland were unsure about how the label the disease. My father and Dr. Meisenberg each independently reached out to colleagues at NIH. Slides were sent to NIH and it was determined that I had a rare lymphoma which has just recently started to be studied called Grey Zone Lymphoma.
When a diagnosis of Hodgkins disease is made, the pathologist will look for Reed Sternberg cells. These cells are a marker for that disease. For Non-Hodgkins Lymphoma CD20 cells are the primary marker. My tumor sample was interesting in that it contained both of these markers. Apparently my tumor has signs of both Hodgkins Disease and NHL. This is what they refer to as the grey zone. Its not a black and white diagnosis, but my tumor is somewhere in between. My father's connection at NIH suggessted meeting with the same doctor who Dr. Meisenberg has been consulting with. After the results of this second biopsy were fully understood, we were referred to Dr. Wyndham Wilson at NIH.
NIH is a unique place. It contains a fully functioning hospital, but it exists solely for research. It is funded by the federal government and payment is not required by patients. American taxpayers(THANKS EVERYBODY) foot the bill for significant medical research. Luckily for me I was able to fit into a current research study that was going on. The research study planned to administer EPOCH-R as a treatment regimen. EPOCH-R is an aggressive form of chemo-therapy, and the doctors' study strives to cure NHL and some with Grey Zone lymphoma with this therapy without the use of radiation. Skipping radiation sounded like a good plan to me. I agreed to the EPOCH-R treatment regimen and got started quickly.
EPOCH-R is unique because the patient receives a continuous injection of medicine for over 96 hours. I would start getting my chemotherapy on a Friday and wouldn't be done until Tuesday. The cool part is that most patients don't have to stay at the hospital. I was given a portable pump that was hooked up to an IV bag full of drugs. I carried the drugs around in a fanny pack while a tube led to a PICC(Peripherally Inserted Central Catheter) line in my arm. The PICC line essentially took the drugs through my vein and right into my heart. From there the drugs would be pumped throughout my body...slowly killing cells in my body.
The first round of chemo wasn't so bad. The biggest problem was going to the bathroom the week after chemo ended. I won't go into details but believe me it wasn't pleasant. Before I started treatment I had gone down to about 200 pounds. I hadn't been that small since my sophomore year in high school when I was still growing. I lost over 50 pounds in less than 6 months. One of the drugs I was on was Prednisone...a steroid. That drug made me eat like crazy. Unfortunately my taste buds were damaged by the chemo, so most things I ate required a lot of hot sauce for me to taste things. I started gaining weight again immediately. Its a great thing to gain weight and have people feel ecstatic for you!
My night sweats, itching, and coughing also stopped almost instantaneously. That EPOCH-R didn't mess around. However, I did begin to lose some sensitivity in my fingertips and my hair started falling off around day 15. I cut it short, but didn't go quite bald. It was kind of cool...I didn't lose all of my hair until after chemo was over. The nurses were shocked along the way that I wasn't losing it all through treatment.
Most rounds of chemo were tolerable. I had 6 of them scheduled and they lasted 21 days. I worked at school through this, and some of my coworkers were amazed and inspired. The students had a limited understanding of things, but loved to see the tubes coming out of my arm. I wasn't myself but I was getting by. After work though I would often come home and nap immediately. There were nights where I went to bed before 7 and didn't wake up until 7 the next morning.
I missed very few days early on, but my treatment was dose adjusted. That meant that each round I would be getting a stronger dose until I became neutropenic. Neutropenia is a condition where there is a lack of white blood cells. I didn't get sick through the first 4 cycles and had been doing fairly well. Unfortunately the 5th cycle fell over the Christmas holiday. The 25th was a Tuesday, which meant I had to spend a couple of hours in the hospital on Christmas. It wasn't all bad though. My family was at home and we had a great time. However, I finally became neutropenic the next week. My wife and I were planning a quiet New Year's Eve celebration together when I started getting a fever. It didn't come down after about 2 hours, and I was told to come in to the hospital. I spent the next 4 nights there and had an awful time. Sleep did not come easily if it came at all. I felt like an insomniac, and it was crappy having to eat only when the meal service was available. Luckily I did not get sick on the 6th cycle.
On January 31, 2008 I went in for my appointment after my 6th cycle. I had gotten back to a weight I felt comfortable at and was feeling good. I had a Pet Scan that showed no signs of disease, and I was declared to be in remission. The doctors seemed excited by my results, and my family and I celebrated my successful treatment. I lost my hair at that point, but my energy came back. At school I had more energy to deal with the kids. I started working my 2nd job waiting tables again, and had fun doing that. I no longer had to worry about picking up my son and being cautious with my health. I bought a new bike for the first time since I was a teenager and had fun times with that. In April I went in for my 3 month checkup and the doctors said the scar tissue where my tumor had been appeared to be shrinking even more. Things were great.
During the second week of June, 2008 I began itching my legs. I became angry but did not share it with anybody. I knew this wasn't a typical kind of itch. It was the same itch I had felt the previous year before my diagnosis. I remember telling myself, "It's Back." I knew it. However, I wasn't ready to share it. My family was going to Oregon for my cousin's wedding the next week, and I knew if I mentioned it or did anything about it, my family would have a terrible time on that trip. I forget how it came up, but my wife said something that made me mention it to her. She was obviously upset.
We went to Oregon and had a great time. During that trip we made plans to visit my sister for her 30th birthday around the 4th of July. I was itching more, but was in denial. Initially I started denying it so that I wouldn't cause my famil anxiety. I still felt great and there were no other pressing symptoms. I was aware of my denial at first. After returning from Florida I had started to believe that this wasn't a relapse. By staying silent I had put it in the back of my mind. My father had noticed my legs and had asked, and I told him what was going on. I know he wanted me to call the doctors immediately. My wife wanted me to call them as well. I supported my denial by reading about other survivors who continue to feel itching and get clean bills of health. It was about two weeks until my appointment, so I didn't make the call.
My six month checkup was July 24th. I had been nervous two nights before and slept little. The day of the appointment though I had no worries. My wife was with me and my father was flying back from overseas at the time. The nurse practicioner who sees me tried to find reasons, like travel, being outdoors, and staying in a hotel for my itching. I tried to let him know that I knew these weren't the reasons. He appeared nervous. While it is usually just a few minutes while the doctors consult and we are alone in the office, this time it took about 20 to 30 minutes. My wife knew at this time that it was bad news.
The research team came in and gave us the bad news. I didn't feel like it was bad news at this point. I was accepting what was going on. I asked a lot of questions...something I was accused of doing too little of the first time around. The situation and course of treatment were explained. My tumor had regrown to about 7 cms across. It was initially 10 by 10 when I was diagnosed a year ago. The plan right now is for two treatments of EPOCH-CR. This will be similar to my last treatment, except for the addition of Campath, a drug used to treat Leukemia patients. The team explained that they have only treated 6 people with this regimen before, so I will be one of the first guinea pigs to get this treatment. The Campath will knock out my CD4 cells, which will make me prone to infection. My father the AIDS researcher described that I'll pretty much be like an AIDS patient on this medicine.
After the tumor is decreased in size, I will have 5 to 6 weeks of radiation. That sucks! Avoiding radiation was the whole point of this trial to begin with. The research team explained that less than 10% of people with DLBC lymphoma have relapsed on this study. However, about half of Grey Zone patients, who are a small sample size, have had relapses. So far everybody who has relapsed on this regimen has gone into remission again with radiation. So it looks like my experience is helping to create a standard protocol for treating Grey Zone lymphoma. I'll be the first one in this study to get EPOCH-CR. I know I can't explain why I have this disease, but I feel like I have it because I'm strong enough to get through it. If my experience can help researchers help others down the line, then I am extremely happy.
This took a while to write down my experience so far. I have appointments scheduled next week, and if the results of the needle biopsy I had today are good, then I will start chemo within the week. Hopefully I will have the energy and desire to keep this blog up during my treatment.