Omaha, NE
Hi,
I wanted to share how my past year has gone. A few years back I started suffering mild symptoms of an illness and for two years doctors would dismiss it. Last year I was sent to specialists and during a visit to my Immunologist/allergist she asked about chest tightness, I had a very mild almost not noticible tightness once in a while and she suggested a chest x-ray. Well they found two large masses in my chest, sitting above my heart and next to my lung. They were worried it was cancer. I then started to visit an oncologist. I had a needle biopsy scheduled and the results were inconclusive. Time for a direct biopsy, we’ll the surgeon decided it might be best just to remove it. In late August I had a full sternectimy and surgery, a 4 hr surgery turned into 11.5 hours because the mass was attached to my lung and tied up in a bunch of nerves. When I woke up I had some numbness, but also had. A chyle leak so I had to have another surgery. I had a nice room in Omaha’s new Buffet Cancer Center so recovery was as peaceful as it could be, at the peak of my visit I had 3 chest tubes, an IV, an epidural, and wires for monitoring, it took a long time to walk and when I did I had to have at least one person helping. I only just turned 35 so I’m fairly young still so it was kind of a shock to have to use so much help. I was diagnosed with a super rare condition called Castleman’s Disease most likely the unicentric version... the better of the two. Typically cured with resection. I found out later part of my and several lympnodes were removed. This disease causes rapid growth of lympnodes, my mass was in fact larger then my heart weighing 1.1 lbs and looks like a turkey leg. Just terrifying to look at. Sadly my voice was mostly lost due to either damage from the lung tube or nerves damaged by mass. I talked with a Batman/Darth Vader type voice, not all that bad if you ask me, but it made it hard for
People to hear me and for me to talk, it also made it hard to keep oxygen in as my left vocal cord is totally paralyzed. I eventually got out of the hospital and was off work for a while, recovering. I had several more doctor visits and got a new oncologist who has experience with Castleman’s who referred me to a dermatologist to check for other issues. One of my symptoms was these painful sores in my mouth and she concluded I had Paraneoplastic Pemphigus (PNP)... another super rare autoimmune disease that accompanies cancer and castleman’s. Sadly the outlook for PNP is usually bad less so in Unicentric castlemans patients, lucky for me. So after being pumped full of prednisone they decided to start me on Rituximab and IVIG. Rituximab is a cancer/autoimmune medicine that targets B cells and kills all of them, this is the cell that is attacking my self
I’m the PNP, so my immune system will go down, one other issue they can’t figure out is my low T cell count. But they also can’t explain why I have not really had that many colds or flu in years maybe one or two occurrences that were not bad at all. The other treatment they started me on is called IVIG it’s a pool of usually thousands of people’s immunoglobins, this seems really creepy to me though it’s extremely safe and have many safeguards to prevent diseases and stuff from transferring. I also had a third surgery where they injected my vocal cord and I, for now, have a somewhat normal voice again!
I just finished the Rituximab and have 11 more IVIG treatments. They are both administered at the infusion clinic.
My pinball hobby has saved me many times though this, I recently bought a building and will be opening an arcade in Omaha this year, and working toward that dream has really kept me going! I will likely do a post in announcements about this soon when I am a little closer to opening, just want to thank everyone on here for sharing information and stories, such a wonderful community! And of course my wonderful girlfriend Nicole who has been supportive thought my recovery and of my pinball hobby.
Grimsby, ON
