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.