I was diagnosed in August of 2007. I was 37 years old, employed as a business analyst by an investment bank in New York City while living and working from home in Pittsburgh. I made trips to NYC every month for some face time. I had been having headaches of increasing severity with increasing frequency for several months. But I put them down to any number of normal causes until one day when I was in NYC I came down with one so severe, that I found myself curled up under a colleague’s desk in the dark moaning in pain. I flew home, and the next day went to the ER where they found a golf-ball sized tumor in my frontal lobe and “countless” smaller tumors spread throughout my brainstem. I was terrified. Initially, they thought it was stage 4 GMB. When the diagnosis came back as PCNSL, the surgeon said I was lucky; it was the “best of the bad options.” Lucky? I guess it is all relative.
After wrestling with insurance who wouldn’t cover Hillman, the top local Cancer Center as in-network, and consulting with many physicians, I started High Dose Methotrexate at 8g/m2 (5 cycles) at Allegheny Memorial Hospital. A complication after my first round — where they prescribed me Dilantin when they shouldn’t have — resulted in drug-induced hepatitis in my liver which prevented my continuing treatment for almost a month, and may have contributed to a disease I developed in the spring. But the delay in treatment changed my schedule such that I was able to go on a golfing trip between my 3rd and 4th cycles. (Always look for the silver lining!). After the 3rd cycle, my tumor showed significant reduction, and the tiny tumors throughout my brainstem were nearly gone. The golf outing became a celebration.
But after the 5th cycle in late November, my tumor had started growing again and the tiny tumors appeared to be returning.
I had a consult with MSKCC, and it was suggested that I try Temodar/Rituxan as a salvage treatment. It was in clinical trial at MSK, but I didn’t want to relocate. However, after I collapsed at a bowling alley where celebrating my 38th birthday on December 15th (I lost the ball on my approach and fell and hit my head on the ball return), an MRI showed a massive resurgence–more cancer than the initial scan. I had to start immediately. I would stay in Pittsburgh under the care of my current doctors, supervised by Dr. Lauren Abrey, then at MSK. I took my first round of Temodar leading up to Christmas and had my first Rituxan on Christmas Eve.
After one month (2 cycles of Temodar and the Rituxan), my tumor had shrunk by 80% and there was no evidence any longer of the smaller tumors. So we were going to go a second month and try for remission after which I would have stem cell replacement as consolidation treatment. But I began developing fevers for which they could never find a cause. In one case my fever reached 107. But because of the hepatitis — and the fact that my liver had never fully recovered — I was unable to take medication to manage them. So I was placed on an ice bed and wrapped in an ice blanket for that one. Perhaps the most painful experience of them all. Others reached 105 — which were managed with ice packs (fortunately, not the bed/blanket wrap). During these fevers, my cell counts would plummet. I began requiring frequent transfusions, and platelet infusions. At one point in mid- march, they could not restore my blood counts, and wouldn’t let me go home. I had a pic line inserted due to all the transfusions, but my blood wouldn’t clot. So my arm just oozed blood constantly. I developed C-DIFF (turns out this was the most painful thing of all — and it recurred several times during my various stays). I was moved to the cardiac unit so they could monitor me more intensely.
Finally, my doctor in Pittsburgh admitted that they had absolutely no idea what was going on and urged me to go to MSK. At MSK it was several weeks before they diagnosed me as having HLH, an extremely rare, mostly genetic blood disorder that very rarely can be acquired in which your immune system just eats itself. It was written up in the NY Times.
In those 2 weeks, my weight dropped to 127 lbs. (I am 6′ tall and normally weight 170). My low platelet count resulted in some retinal hemorrhaging, which blinded me for almost 6 weeks (I still have flecks of the scarring in my vision today). But I also reached remission with the PCNSL. When they diagnosed me, I began an Etoposide chemo regimen which got me back on track. Once I was back on track, I had 13 cycles of low dose WBRT to consolidate before I had a bone marrow transplant in the fall. It is the only known cure for the HLH. But we thought it would serve as a good consolidation (in place of stem cell replacement) for the PCNSL, also.
The BMT was an ordeal in itself. For the first time, I had significant reaction to the chemo (can’t recall the cocktail) used to wipe out my immune system. My mouth sores were so bad I was on intravenous feeding for 2 weeks. I couldn’t eat or swallow. But on 9/26/28, it grafted. After that it was 3 months of follow up while I stayed at Hope Lodge in NYC with my father who took a leave of absence from work to be with me, and they let me go home to my wife and daughter (who had been in Pittsburgh the whole time with occasional visits to NYC).
Finally, though, I developed Epstein-Barr-Virus Lymphoma while on a victory vacation with my family to Florida and had to fly back to NYC after only a couple of days for a booster shot of bone marrow from my donor, two more weeks in the hospital and 30 more days at Hope Lodge. At last, in April of 2008, I was given a status of “disease free”! And returned home for good, and began the 18 month process of being re-vaccinated with all of my childhood vaccines which were wiped out by the BMT.
I returned to work part time that November and full time in January of 2009. I now have my same job, have even been promoted to vice president. My daughter who was 2 when this started is thriving at 7. I took up guitar and now regularly play open-mics in NYC when I’m there for work. Unfortunately, my wife and I are getting a divorce (one of the big changes that has come out of this–don’t fret, it is the right decision and we’re doing this amicably). Still it is hard. I learned a lot about myself during and after this experience. But I am a changed man because of it. I am a better person because of this. And while it is still a struggle sometimes, I am eagerly moving forward and getting on with my life!
Nate