Turns out my premature ventricular contractions (PVCs) are a bit exacerbated by the prednisone dosage I am on. So now I need to go take a trip to the emergency room, get my heart checked out there, and see how it is. I’ll try to provide updates from there, or after I get back (Depends if I am admitted or not)
Just the prednisone today.
The prednisone makes me incredibly nauseous and increases the number of irregular heartbeats I am experiencing. Yay.
I have a call in to my oncologist, hopefully the chemo nurse calls soon.
Prednisone still tastes horrible, for what it is worth.
Today will hopefully be a short post. I took my prednisone 30 minutes after eating breakfast this morning. I took my Methotrexate just a few minutes ago and we’ll see how that goes – no side effects from the prednisone yet, but this is only day one. Let’s hope for minimal side effects, but we will see. So this is the first day towards kicking this cancer into remission. Let’s hope remission comes sooner rather than later – although yesterday, my oncologist stated that I will be on methotrexate for quite a while – as it is a good medication, but it takes a while to work, so lets hope I go into remission in… let’s say six months. Sucks that i’ll be doing chemotherapy on my birthday (July 28th), but I usually just sit at home and spend it with my immediate family. Today is May 28th, my birthday is July 28th. My birthday will be the 2 month anniversary of starting chemo. Let’s see how quick this stuff works.
So on Tuesday, I went to the California Cryobank of New York City and stored some sperm. It is a wondrous tale! I arrived there about 30 minutes early, with my dad (as I cannot drive, he had to drive). He helped me fill out the forms (due to my dysgraphia), but I filled out the more awkward stuff. They asked quite a few questions about me and my medical history — and I am in the process of applying for the Livestrong Fertility Program – which gives me a discount on this stuff because of my diagnosis. So, they had me provide a urine sample and then engage in sexual relations with a cup. So, what is a sperm donation (or preservation) room actually like? Well, it is certainly different from the movies. This place, you could tell, was under construction (which it was, they were in the process of expanding) – the walls of the donation room were scuffed up – and the… magazines looked waterlogged, with what, I do not know. I refrained from touching them. After that, they examined it check viability and then they took me in to take blood. The poor phelbotomist was incredibly scared of my tiny veins. He barely tried to draw my blood – he just stuck the needle in and pulled it out a few seconds later and said “Yeah, these are the smallest veins I have ever seen. I do not want to risk popping them, so take this form to your oncologist tomorrow and have him run these tests and fax it to us.” I was rather tired after that… awkward experience, even only having to walk 0.2 miles to where we parked the car.
So, today I saw my local oncologist. The phlebotomists there were very confused by the paperwork the bank gave us – as LabCorp does not use traditional medical codes, so they had to break out their code books and convert the LabCorp codes to the traditional codes. They still didn’t know what one of the tests was, so they sent me on my way to get weighed. I’m at 107 lbs now (I was 110.2 when I saw the NY oncologist last) – and my blood pressure is normal for me. Then I went into the exam room to await my local oncologist. When he walked in, he was accompanied by someone, and my first thought was “Well, I guess he wants to show off his fun medical enigma. :P” Turns out it was his daughter, who is studying to become a nurse, and she is spending the summer at the office, learning about oncology.
So, my WBC count is down (it’s around 14, was at 17 on April 30th – Hemoglobin is around the same. He said that my treatment regimen (Prednisone & Methotrexate) is one developed and tested by Thomas Loughran in a trial he conducted a few years back and that he thinks it should work well on what I have. He said that the methotrexate will take a bit to work and that the prednisone should start soon – the methotrexate will be what will do most of the heavy lifting and the prednisone will kill the lymphocytes. Then after that, the doctor said the phlebotomists kept sending messages to him on the office IM that they needed more tubes of blood – they figured out what the other test was. Luckily, the phlebotomists there are very good, and they did it pretty quickly. I start chemotherapy tomorrow and then on June 10th, I see my local oncologist again. I’ll be seeing him every two weeks, and my NYC oncologist once a month.
Just got off the phone with my local oncologist and he said that he talked to the NY oncologist yesterday and that due to the fact that my blood work changes so often, they want me to get bloodwork done next wednesday, then I will start chemo on Thursday. Yay.
Also, looking into sperm banking, as I managed to find a local place that freezes sperm – as most around here are exclusively for women to freeze their eggs, which is just peculiar – if you offer one service, why not the other?
So that is it for now. I’ll update you guys sometime soon on what is going on.
So, to start – welcome to all the new readers, those I have only met online and those I have met in person alike. I have shared this blog with multiple communities (including Facebook) – so hopefully people will keep reading this blog to keep up with how I am doing.
Let’s get back to the subject of this post – chemotherapy. Got the pills from the pharmacy this afternoon, then I remembered the warning “Don’t take them too late in the week, because it is a long weekend, and we want to be able to get back to you quickly if there are side effects.”
So I got in touch with the NYC oncologist’s nurse, who called me a little while ago and told me that my NYC oncologist was talking to my local oncologist, and the NYC oncologist had some outstanding questions (the nurse didn’t know what the questions were) – so I don’t have to start the chemotherapy until Tuesday at the earliest. Yay!
So, my next blog update will probably be Chemotherapy: Day 1. Unless I get a call from a doctor by them.
So I went to the doctor today and he told me the diagnosis. It is, as the title says, manageable, but not curable. He thinks the first round of chemo should knock it into remission. So, what is the diagnosis? Chronic NK Cell LGL Leukemia with T-Cell involvement. In case you can’t find anything online about it, that’s because it is *incredibly* rare. One of the pathologists my oncologist consulted, who works at MD Anderson in Texas, said that in his 30 years of being there, he has encountered maybe 5 cases of this.
So, where do we go from here? I start oral chemo when my local pharmacy gets the medications in. I will be taking prednisone 50 mg, once a day, along with 10-20 mg of methotrexate once a week. They said that since it is a less aggressive chemo, I shouldn’t lose my hair, and the most likely side effects are personality changes (from the prednisone, a steroid) and increased appetite/weight gain (again, from the prednisone). They drew 5 tubes of blood today, but they didn’t need to draw any after seeing the doctor, thankfully.
My dad decided to drive us into NYC today, because he decided to come home from work feeling “sick” (aka he felt guilty). My next appointment with this oncologist is in July, and I am going to meet my local oncologist two weeks after I start chemo.
The doctor gave us a little book (about 100 pages) on Non-Hodgkin Lymphoma (which is close enough), but most of it doesn’t even cover anything related to what I have, due to the rarity of it. It’s more of a generic informational book for people with more common diseases. It was a fun read on the car ride home.
The doctor’s assistant told me that I cannot wear a shoulder seatbelt any longer, only a lap belt – apparently, if the car were to suddenly stop or get in an accident (which would cause the seat belt to lock), it has the potential to pop my spleen. How enjoyable. Let’s try to avoid that, shall we? She also told me that I should consider sperm banking before I start chemotherapy (sort of awkward to think about, but it seems sort of necessary, I suppose).
So, this is a bit shorter than my usual blog post because honestly, i’m a bit tired from being out all day and waiting around the doctors office all day (Got there at 12:10, waited for my dad to park the car and he got back around 12:30, so we went to the office around 12:20, then they sent me for blood tests right after checking in, then we got back up to the office around 1 PM and we sat there until around 3:45, when we got called into the exam rooms to see the doctor. We spent around 1 hour, 15 minutes with the oncologist and his assistants, where he explained it to us (along with informative drawings! He had special markers that he had his assistant fetch for him!). After we left the office, we ate at the Tri Tip Grill at 30 Rock, it was pretty decent, had a bacon cheeseburger & fries. Then we were stuck in the lovely NY traffic – took about 1 hour to 1 hour 15 minutes to get out of NYC & the Lincoln Tunnel.
Damn. Went on a tangent. I was planning on ending this blog post with my start of the prior paragraph, but I guess I had a bit more to talk about. Well, that’s the way writing goes. So for now, goodbye.
So, yesterday, in case I start chemo tomorrow, my family (My mom, my dad, and my brother) and I went out to my favorite restaurant to have a good meal (Spoilers: It was amazing, just as expected). Pictures of the food will come later, when I can get on my desktop to resize them so I can upload them here, to the blog.
Today, I was doing something that my doctor told me I shouldn’t do – look up information about NK Cell LGL Leukemia or Lymphoma online. Oops. But I found some useful information, especially from an article from the journal Blood (Seems more a journal for vampires, rather than hematologists, but whatever) from 2011 – I forget the name of the doctor who authored the article, but it was titled “How I Treat LGL Leukemia” I believe. From that, I gained some useful information, such as: If an oral chemotherapy drug does not work within four months of starting it, it is considered a failed treatment. If it works within four months, chemo will last for 6-12 months (Whether it is 6-12 months more or 6-12 months on top of the 4 months already conducted is a mystery to me) – so I now know a little bit more about what I have (I keep wanting to call it cancer, but I think the doctor is right with his mindset that it should be referred to by its name – I just need to think of a good shorthand for it. Any ideas?).
Tomorrow, my aunt should arrive at my house at around 11 AM and then will drive my mom, my brother, and I into New York City, then my dad will meet us at the office (as he works in NYC) for the long period of waiting that we will have to endure (He is double and triple booked the morning of my appointment, yay).
So tomorrow, expect an update about me, most likely detailing what I have – either NK Cell LGL Leukemia or NK Cell LGL Lymphoma, and maybe when I will start chemo, and what is going on with that.
Now, osme of you may wonder, “How do you feel?”
If you were to ask me in person, I would most likely say “Well, do you mean physically or psychologically?”
To the former, I would say “Well, currently I feel a bit of pain in my back (It is difficult to get comfortable when you have been lying on a couch for almost 30 days – only getting up to go to the bathroom or go to bed), my hip is a bit stiff, and I feel a bit tired (Yay, fatigue!).” I’d take a nap, but I have to be asleep early enough to wake up at 9 AM (as I like to wait an hour after waking to eat, otherwise my stomach gets unsettled).
To the latter, I might say “Honestly, I feel nothing. I am sort of ambivalent, really. I’ve had so much medical stuff hapen to me in my life that this is just another medical rarity/mystery/enigma to occur. Of course I get the super rare cancer, I never get anything simple.” Honestly, I find it sort of humorous, in a dark comedy kind of way. But to tell the truth, if you are someone reading this blog facing a big medical issue, like cancer, or disability, for the first time in your life, here’s my trick to staying so upbeat: No matter what has happened, there are still good things out there, so don’t lose hope. Think about all the things you might miss out on if you just up and gave up – some things I like to think about are my favorite TV shows (Two of my favorites? Game of Thrones and Person of Interest), video games that I enjoy or am looking forward to, movie franchises that I enjoy or am looking forward too, or all the friends I have made online who would be, or other things important to me. So if you are feeling down, just think of things that you like.
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)
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.