Other things I will post about on this blog.

Obviously, I have other interests than my current medical issues. For example, I hold a Bachelors of Arts in Special Education – I am a certified teacher in the state of New Jersey in Elementary Education (K-6) and Special Education. I’ve been looking for a job since I finished student teaching December 2013 – but I was unable to start looking until March 2014 (Yay for wisdom tooth extraction & the state taking a while to send out my license?), so I was looking for almost a year until we found out about my cancer – so the job search as been temporarily suspended. It’s a shame, too, since this is when every school starts to post jobs, as it is nearing summer (even though schools in NJ don’t let out until the middle or end of June, depending on how many snow days were scheduled).

So, I went on a bit of a tangent there, but a necessary one to provide some more background info on myself. Some interests I hold are genealogy (aka family history), which I have been interested in for around 5 years – my family tree is a bit… hard to research, so not much progress was made until recently, when I got an ancestry.com subscription for a nice discount ($99 for their world membership for 6 months of access). The farthest I have traced back is to a couple on my mom’s side, who came from Baden-Wurtemburg and were born in the 1820s-1830s.

Another interest of mine is special education & advocacy. I have a lot of personal experience with special education, given my multiple disabilities, I have been through almost the entire continuum of special education services* – self contained, partially mainstreamed, resource room, general education, inclusion, and adaptive PE (A special form of gym class for those who cannot perform well in a regular gym class). I am very interested in advocacy for those with special needs due to the fact that I was not treated very well K-12, as after I was taken out of the self-contained classroom, the district failed to comply with the law (A fact my parents never knew, until we got my special education records after my HS graduation), which resulted in me being unable to even write my name legibly.

I am also interested in advocacy for people with disabilities in general – I know a great deal about SSI (Supplementary Security Income, a service the United States Social Security Administration offers for people with severe disabilities to have a small stream of income) – as it took me 30 months to qualify for it, to the point where I had to convince an Administrative Law Judge that I was disabled enough to qualify for SSI (Sort of a catch-22, when one of the reasons you are applying is because of anxiety). So if any readers of this blog have a question about genealogy/family history, special education, special needs advocacy, or just anything regarding education in general, feel free to post a comment and I should reply within a few hours, unless I am sleeping, or at the doctors.

*The continuum of special education services consists of the folllowing placements, from least restrictive to most restrictive (However, the most restrictive might be the least restrictive for a student with a disability, based on their needs. This is different from the term Least Restrictive Enviroment, which all students with disabilities are guaranteed to per IDEA, the Individuals with Disabilities Education Act)
Placement with nondisabled peers (general education)
Inclusion (A special education teacher comes into the classroom, teaches either a few classes or the whole day with the general education teacher)
Resource room (A placement where the student is split between gen ed/inclusion and a room with other disabled peers where they learn under the instruction of a general education teacher)
Self-Contained (The student spends 60% of more of their day in a classroom taught by a special education teacher – they might leave, or be mainstreamed, for one subject, such as language arts. They typically share subjects such as computers, art, etc. with nondisabled peers, along with lunch)
Homebound Instruction (Typically given when a student is too ill to attend school OR a doctor determines the student is unable to attend school and would function better if instructed in their home. Some states allow cyber schools to be their method of instruction, others require a teacher to come for 1-2 hours a day after school and instruct the student)
Out of District Placement (District pays for a student to attend a private school for students with disabilities, which tend to have excellent care, but are targeted for specific types of disabilities, so you might have a school just for students with autism, one for students just with learning disabilities, etc.)
Residential Placement (Think boarding school, but just for students with disabilities)

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.