Month: May 2015

So, I finally figured out a way to make the prednisone not taste horrible. Guess what it is? Eat half a scoop of ice cream (Make sure to have some just rest on your tongue until it melts), drink some soda (I like Diet Canada Dry Ginger Ale) and hold it in your mouth, pop the pill in (after rubbing all of that darn powder off! It’s a very important step.), and swallow. Then just start shoveling ice cream in your mouth, making sure it coats the back of the mouth. My flavor is chocolate ice cream – nice and flavorful, and not likely to take on the taste of the nasty pill.

So, hopefully this works tomorrow, too. If so, I have found a way to take a horrible pill. Yay!

Got to the ER at about 5:30 PM yesterday. Apparently saying you have PVCs is a really quick way to get into the ER. Got in a bed almost immediately. They had to stick an IV in – rule of being in the ER with a heart complaint 🙁

The nurse who first tried to IV me may have popped the only good vein left in the crook of my arm. So another nurse was brought in, one with experience with micro-premie veins. She was very good – had to put an IV in the top of my wrist, which hurt quite a lot, but she also drew blood from it before converting it for IV, which was nice. Sadly, that blood came out too slow and hemolyzed, which made them back to come back to the bed and have two nurses come in to take more blood. Want to know what hurts more than having an IV in the top of your wrist? Having a nurse press down on the IV needle, twisting your arm, then resting the hand with the IV in the wrist on the railing of the bed, and leaning on it, making it shake for 5 minutes straight while the horrible, horrible nurse moves the needle in your arm trying to catch a vein. I’m pretty sure the guy popped the vein – the arm hurts like hell today.

So today was day three of Chemo.

Prednisone still sucks. Anyone have tips for getting that horrible taste out of my mouth ASAP? My usual trick, peanut butter, takes too long to chew and swallow. I took Zofran about an hour after the prednisone, and the nausea is gone. Yay!

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.