Welcome to me and my life

Picture of me on Wednesday, May 14th, in the kitchen
Picture of me on Wednesday, May 14th, in the kitchen

So, people might know me by a few names, but let’s just make it simple and call me bros. For those who don’t know, i’m a 24 year old guy from New Jersey and I have been told that my circumstances in life are a bit on the odd side – many would say I have been dealt a bad hand in life, but I prefer to think of it as a nice challenge – a hurdle for me to overcome.

So, I was born at 25 1/2 weeks, multiple disabilities as a result of my early birth, but we can go into that later, in another blog post. So why the domain name ‘IGotCancer.net’? Well, that’s simple – I was recently diagnosed with cancer. I had some regular blood tests ordered by my neurologist, which I had done on March 7th, which turned out abnormal (High Lymphocytes, High WBC, Low RBC, along with about 17 other things). Both my GP and my Neurologist were incredibly confused about the results, and requested that I repeat the blood tests, which I did at a local hospital that I have been to many times in my life.

The blood tests were performed on March 28th, and they were similarly abnormal, so I started on my current journey – I was referred to a hematologist/oncologist, he did a bunch of tests (including a bone marrow biopsy, which turned out to be a completely dry tap*). We also discovered that I have splenomegaly (Also known as an enlarged spleen, mine is destroying red blood cells and causing anemia – but not iron deficient anemia). After about 3-4 visits, he told my parents and I that whatever I have, it was beyond his expertise, and that he was in contact with multiple experts in the field of oncology via email (Including Dr. Thomas Loughran at UVA, A T-Cell disorder expert at Memorial Sloan Kettering in NYC, and an expert oncologist at Columbia University Medical Center’s Center for Lymphoid Malignancies).

So last week I saw the one at Columbia and he did yet another bone marrow biopsy**. Currently waiting on the results of that, along with the results of the blood tests they performed (They took out 7 tubes of blood. Quite uncomfortable.) – should have those results by my next appointment, on the 18th of this month. However, at the appointment last week, he told my parents, my brother, and I that I have one of two things: NK Cell LGL Leukemia or NK Cell LGL Lymphoma. He stated that even there, where they encounter rare cancers so often that they are common at that office, what I have is going to be remarkably rare. From my limited research on the two (Which O’Connor does not want to refer to as cancers, as that makes them seem more common) there are around 10 diagnoses a year for each. Luckily, my cancer is very indolent, or slow to progress, which means it is very treatable – oral chemotherapy will be the first thing tried, and hopefully, it will kick this cancer’s ass.

So, that’s where i’m at right now. My hip hurts from the biopsy last week, i’m a bit fatigued from the large spleen (Yay, afternoon naps!), and I am pretty much couchbound from a hospitalization last month, where my feet turned purple, swelled up, and my legs swelled up to the bottom of my knees. It was quite unpleasant, but it is believed to have been caused by my spleen temporarily compressing a vein. So, i’m doing well right now. See you next blog post, I suppose.

 

* A dry tap is when they are unable to extract semi-liquid marrow from your bone – it hurts a lot, just so you know.

** For my first bone marrow biopsy, I got to take 2 percocet beforehand, as I am a rather nervous individual. When I went to Dr. O’Connor, the biopsy was a total surprise, so I had to have the biopsy with just a whole bunch of lidocaine injected into my skin – about 1.5 vials worth, by my parents estimations.

One thought on “Welcome to me and my life

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