The Story

As promised, here is the story of how we were introduced to lymphoma:

Casey had been struggling with a cough for several months. He is unsure when it began exactly, but he can remember having a coughing fit in June during a practice test when he was preparing for the bar exam. He did not make a very big deal of it at the time, but he recalls bringing his papers to the lobby of the school b/c his coughing was bothering the other students. I saw Casey several times over the summer, and we spent one week together in Hilton Head in August. Then, as most of you know, he moved to Long Island, and I have seen him every weekend and several days during the week since the move, and I can attest, I only heard the cough a few times. Nevertheless, it bothered him enough, that once he got settled in his new job, he made an appointment out on Long Island to see a primary care physician (who he picked randomly out of the insurance book).

On Monday, October 15, 2007, Casey saw a physician's assistant in Deer Park, and complained of his cough. He told her he believed he might have tuberculosis, so she did a PPD. She explained that if it was positive, he would need a chest x-ray. At the last minute, she opted to send him for the chest x-ray the following day, without waiting to see the results of the PPD. At this point, I believed he might have had pneumonia, and was not at all concerned about the chest x-ray.

On Tuesday October 16, 2007, at lunch time, Casey drove himself to the radiologist. The technician asked him if his PPD had been positive, so he showed her his arm, and said "nope". Together, they laughed at the ridiculousness of why he was there for the chest x-ray in the first place. She took the x-ray, and while doing so, asked him twice if he is a smoker. This question really bothered Casey, and he led him to believe that he had lung cancer.

Later on Tuesday, the PA called Casey and asked him to come in at 5:45. During the afternoon, Casey started to panic a little, and I laughed it off. I promised him he did not have lung cancer, but something about the news bothered me, so I began turning to my own PA friend with questions. Tuesday after work, I was not concerned, so I went to the gym. I could not get a treadmill with a working television, so I hopped on an elliptical machine. I kept glancing at the clock on my phone, wondering when he was going to call.

Casey finally called around 7. I asked him to tell me what the PA had said, and he said to me, "I don't want to tell you." I got right off of that elliptical machine, and began making my way to the locker room, when he said to me, "They found a large suspicious mass in my chest. They said it looks like Hodgkins." It did not take long for this to register and for me to completely lose it in the locker room. I became one of those people who is having an internal crisis in the middle of the big city. I sobbed my way from the gym to the street, and decided that walking the 45 blocks home might be better than getting on the subway in my state. Casey told me he was ok, but that he wanted to come over. Then I started making phone calls.

I called my mother, and she answered to my sobs. I told her what Casey had said, and she immediately cracked. I admonished her, because I really thought she would tell me it would be fine, and that it was nothing, but I could tell she was alarmed and really upset. While on the phone, strangers approached me and tried to get me to calm down as I was truly sobbing my way uptown. I think during this time I also called my PA friend, to let her know the results of the chest x-ray, and to ask her opinion. At some point, the walk home was taking too long, so I hopped on my favorite bus that goes across 57th Street and up York. I stifled my tears on the bus, but I could tell people were staring. My cousin called randomly during the ride, and since he could tell something was wrong, I filled him in. I got off the bus at his apartment, and he walked me the rest of the way. By the time we got to my place, I could see Casey driving up my block, looking for a parking spot.

Casey got to my apartment, and we both lost it when he walked in the door. We held each other crying for five minutes. That was all he would allow himself- five minutes of self-pity and fear, and worry for his family. He calmed down really quickly, so I did too. We ordered some food and I convinced him to call his family. I think he was glad he did- they were wonderfully supportive.

On Wednesday, October 17, Casey insisted we both go to work. He had a CT scan of his chest schedule for lunch time, so I dragged my tired self to work. I hemmed and hawed about going to Long Island so we could get the results together, but he convinced me not to. Around 4:00, I got on a train to my parents town, and he was going to meet me because he wanted us to do our laundry. While I was on the train, he stopped in at the doctors office, without an appointment. He was seen by the doctor, who read him the results of the CT scan. He had a 7.5 cm mass in the center of his chest, and several other masses measuring 2-3 cm throughout his chest. The doctor said it looked like lymphoma, and was probably Hodgkins. He recommended that Casey see an oncologist and a surgeon for a biopsy. He met me at my parents house, and we absorbed the information together. We ordered the pizza, did our laundry, and went back to his place.

On Thursday, October 18, 2007, I immediately began making calls to recommended lymphoma doctors at Memorial Sloan Kettering. My mother and my aunt did the same, and we eventually got Casey an appointment for a consult with a thoracic surgeon at Sloan for the following morning. That afternoon, after introducing Casey to Nathan's hotdogs, we went to see a pulmonologist who was willing to squeeze him in as a favor. Dr. Janus read the scans and examined him, and confirmed what we already knew, that it looked like lymphoma, and that it was presenting like Hodgkins. She was pleased we had an appointment at Sloan, and said we did not need to see her again.

Thursday night, although we did not feel like it, we went back into the city to see an off-broadway show, Three Mo' Tenors. The play was really entertaining; these three guys sang ten different types of music, and I think we were really able to escape our problems for a little while.

On Friday, October 19, we headed to the satellite office at Sloan on 53rd Street. We registered him, and got the best news we could get- Casey has the only medical insurance that Sloan has a contract with. With that good news, we headed to meet with Dr. Rizk, our thoracic surgeon. Dr. Rizk saw us quickly, and explained how the biopsy would be done, and agreed to squeeze us in the following Wednesday. Dr. Rizk would try to get the sample from Casey's neck, but if he could not get enough, he would have to go after the mass under his ribcage, so Casey would need general anesthesia just in case. Casey went and had some pre-admission testing, and then there was nothing left for us to do but wait for Wednesday.

Over the weekend, we spent a lot of time together, cuddling, napping, and seeing movies. I got out and saw some friends to celebrate my birthday, and during that time Casey got to finally have some time alone to think. He's really been coping well- he does not allow himself much time to feel sorry for himself. He mostly worries about me and his family having to deal with this too.

On Wednesday, October 24, we headed to Sloan for the biopsy. Check in was easy, and Casey was gowned and robed and IVed within an hour. His surgery, however, was delayed, so we sat with him for a few hours while we waited. Finally, he went in. Ninety minutes later, I was notified that he was out of surgery. Dr. Rizk met with me and my mother in the "consultation room", and explained that he took some tissue from a node in Casey's neck. He did not need to go through his rib cage, which was a relief. Dr. Rizk confirmed that Casey does in fact have lymphoma, and that was really all he had to say. Hours later, Casey woke up and we were allowed to see him. The comedian pretended not to know me, which gave me quite a scare. Fortunately, he felt alright after his surgery. His biggest complaint was a sore throat due to the breathing tube he had during surgery. We finally went home, ordered some dinner, and went to bed early.

Thursday, October 25, was my birthday. I woke up feeling terribly sorry for myself and for Casey. The tears started as soon as I woke up and despite the beautiful cards and gift from Casey, I could not get out of my funk. Casey, however, had a productive day. He spent hours cleaning my apartment, which looked amazing when I got home. We went to a fantastic dinner at Bouley- the restaurant is very quaint, quiet, and romantic, definitely a special place.

Friday, October 26, was a horribly frustrating day. We learned early that the head of the lymphoma group, Dr. Zelenetz, had gotten Casey's biopsy results. Immediately, we began to get nervous over the big question: Hodgkins vs. non-Hodgkins. Casey called his surgeon, and was told a nurse would call him with the results. Hours later, the nurse called, and advised that Casey's results were not in yet. This was infuriating, as Dr. Zelenetz was able to see them. We then learned that while Dr. Zelenetz had scheduled an appointment with Casey for 11/15, he would not share the results with Casey as Casey is not his patient yet. This news was very tough to handle, as somewhere out there was a piece a paper that indicated which cancer Casey has, and we could not get access to it. The frustration made us angry, and we even snapped at each other. We both felt incredibly guilty for getting snippy at one another, and quickly apologized and move on. We then went to Jersey Boys, and put the whole thing behind us for the night.