Woke up at 7:30 to eat breakfast an hour later, so I could take the prednisone around 9:30 before heading into the city to see the NYC oncologist.
We got there on time for the appointment. Then I had the usual fun of a blood draw, but this time, I encountered the world’s *worst* phlebotomist. She started off by mumbling at me, then she put on the tourniquet, if you can describe it just barely tied around the arm as being “put on.” To nobody’s surprise (other than the phlebotomist), she had trouble finding a vein! Then, due to the pain of a needle being jiggled around my arm, I screamed at her, “Hey! Maybe try tying the tourniquet, then you will find the vein!” Her response? “Oh. It isn’t tight?” My response was “You barely tied it.” Then she tied it, and she was actually able to find the vein! I must be magic.
After the horrible blood draw, got back to the waiting room, where we waited for only 1.5 hours! Guess the trick to get in quick is to bring lunch with you? Then we sat in a new area – saw the doctor and he liked all my numbers. Going to start to taper off the prednisone starting tomorrow and it should take something like five weeks. Boo! But, he likes how my numbers are looking – he wants to see me again in August, then he might want to see me every two months, as methotrexate is a very slow working drug, it isn’t the kind of chemo that you take 6-12 doses of and the cancer goes into remission.
So i’ll be on methotrexate a while. Then he left the room, said to wait for the chemo nurse to come by so she could discuss the prednisone tapering with us, then we could leave after that. The nurse never came by. Over an hour later, the doctor walked past where we were sitting, said “Hey, you guys are still here? Do you need something?” So we told him the nurse hadn’t been by yet – turns out he forgot to tell the nurse she needed to talk to us. Oops. Then she came in, discussed the taper schedule with me (10 mg lower dosage a week, then on the 10 mg dose for 7-14 days). They forgot to call it into the pharmacy, they are going to try to get it in tonight according to the on-call physician.
Good news everyone! My Absolute Neutrophil Count (ANC) is up! It was at 200 on May 18th and today it is at 500. Now I can go outside again because my body can sort of fight an infection. Yay! The oncologist also said something that was rather irksome – he didn’t seem to understand my underdeveloped muscles and hypotonia. He commented on how skinny my arms are (due to the lack of muscle mass, which is pretty much impossible for me to get – I have had years of occupational therapy, none in recent years, but I have never been able to lift more than 5 pounds on a good day, and never for more than maybe 10 seconds before my arms give out) and said I should start weightlifiting at home… by starting with 5 or 10 pound weights, “because those are easy.” I said, “Maybe i’ll start with 1-2 pound weights. That’s about what I can lift.” He looked at me slightly confused, then I explained my underdeveloepd muscles and hypotonia to him, and he was like, “Okay, but this is a chronic condition and you need to be strong when fighting it 10, 20, or 30 years from now.” That irritated me a bit. He was also perplexed by the prednisone not causing me to gain any weight – but he was like, “Yeah, you’re a rare case, so I can’t expect typical results.” He was also a bit surprised at the methotrexate making me sleepy, but he was just like “Huh. That low a dose is making you tired? Hmmmm.” I think that interested him. Guess he is taking mental notes for something :P.
Sorry for the random segue/out of sequence bit there, but it just popped into my mind while typing this out. So, my weekend? Uneventful. Had some bowel movements (Yay!), wasn’t hungry (but was able to make myself eat as much as I wanted), and was sleepy (Took a three hour nap on Friday. Yay mehotrexate!).
Then we headed home from NYC after the shortest visit with this guy ever (11:30 appointment, arrived around 11:20 after my dad parked the car, go in to see him around 12:30, sat around for a bit, got out around 3 PM). While stuck in traffic in NYC, I saw a sign that I found humorous (Mostly because I didn’t read it as intended, just read it purely top-to-bottom). Here it is, enjoy: