Happy Wednesday everyone! Yesterday was my birthday. I decided to be a bit adventurous with my birthday dinner and it went well. I ate a hot dog on a homemade pretzel bun with homemade garlic cheese sauce, with a side of homemade french fries drizzled with the cheese sauce. For dessert, my mom made a homemade chocolate cake with homemade frosting. It was rather good. Stomach is a tiny bit unsettled today, though. It was worth it! Today was my last day of prednisone. Woohoo! Now I just take the methotrexate every Thursday. However, my fatigue has returned and I have been tired pretty much every day this week. Guess getting off the prednisone can’t be all good! So, tomorrow I see my neurologist, who I am going to ask about medical marijuana for my weight loss (Which is somewhere around 8-9% of total body weight) and then I see my local oncologist, for blood work. A week from today, I go into NYC to see the NYC oncologist. That should be fun. Maybe the visit to NYC will be as short as last time! So, i’ll update you on all of this on Monday!
So, it’s Monday. Friday, I took a 4 hour nap – that was pleasant. My stomach was temperamental like every Friday, so I ate a bit of white rice for dinner and some popcorn for a snack. Did not do much on Saturday, just watched TV and laid on the couch. Sunday, went out for a bit to see dogs up for adoption – first place we went was rather crowded, so we left after a few minutes because there were too many people. Second place pretty much had pit bull mixes (We do not want a pit bull), tiny dogs, and a dog that just kept barking and growling. So we’ll continue to look and go to these events as they are run by rescues, so different animals will be there most weeks. Sunday, I took a two hour nap. It seems my fatigue has returned now that I am almost tapered off the prednisone. Yay, fatigue!
Tomorrow is two things: My 25th birthday and it marks two months of chemo. I’ll try to have some fun on my birthday, but I am always home on my birthday, anyway. On Thursday, I see my local oncologist and my neurologist. I am considering talking to the neurologist about prescribing medical marijuana to help with my weight loss. Of course, I will consult both oncologists about it before taking any, but it will take a little while for the application to be processed by the state if my neurologist will prescribe it for my weight loss.
So, see your guys on Wednesday. Won’t be that much to talk about, but next Monday’s blog post should filled with stuff from the neurologist and oncologist appointments.
Me, on the couch, at 3:26 PM on Wednesday, July 22nd, 2015
Happy Wednesday, everyone!
So, the past few days haven’t been that eventful. Took a laxative on Tuesday. That was as pleasant as it sounds. Tomorrow, my dose of the prednisone lowers down to 10 mg a day, yay! I also take the methotrexate, so I should sleep a lot this weekend. Today I had an egg & cheese sandwich for breakfast, it was quite delicious. I was still full from breakfast, so I had a poppy seed roll for lunch. Tuesday, the 28th is my birthday. Yay. It also marks two months of chemo. Still not eating the normal food I ate before chemo, so booooooo. Maybe i’ll be in the mood to eat some more normal things the saturday after my birthday? That would be nice. So, this weekend I will probably go out and look at adoptable dogs, perhaps we’ll see one we like and try to get it. We are planning on going to two events held by rescue groups at local pet stores.
Me, at 2:09 PM, on Monday, July 20th 2015 eating my lunch of Rye Bread. Yum.
Happy Monday everyone! Hope all of you had a good weekend. Friday, I had a nice nap and was not very hungry, so I ate just a little bit, including some popcorn around 8 PM when I watched some stuff on the DVR with my parents at my brother – because popcorn is not very filling until after it is in your stomach, so you don’t really go “Ugh. This is too much!” Saturday, I was still a bit tired, so I did my usual and sat around watching TV most of the day. On Sunday, I didn’t go out to see any adoptable animals, but I did get to go out to the movies and see Ant-Man, which was a very enjoyable movie – I recommend that if you have enjoyed marvel’s previous offerings, give it a watch. I also had a coupon for “Buy any size drink, get a small popcorn free,” which is a better deal than it sounds – as you can just pay the price difference between a small popcorn and the other sizes of popcorn to get a decent sized thing of popcorn – so $1 on top of the price of the drink for medium, and $2 for large, which is nice. After the movie, the short drive home was rather unpleasant, as it was incredibly hot in this area this weekend – I believe it was around 92-95 degrees (F), felt like 100-102. So, just a bit toasty. I am a bit tired today, so I might take a nap soon, or I might not. For breakfast, ate two frozen waffles (size equivalent: like half a Belgian waffle), which is rather filling for me. The prednisone taper seems to be going well, in that I haven’t experienced any adverse effects, which is nice. Hopefully it continues like this. Next Tuesday (The 28th) is my birthday. Still going to be on prednisone then, so not going to be in the mood for any really adventurous food. At least it’ll be a Tuesday, so the methotrexate shouldn’t make me tired all day, at least. That’ll be a welcome reprieve. So, I didn’t take a nap today, just pushed through the fatigue, which subsided around 4 PM. Ate a cheesesteak for dinner. It was quite delicious. So, I think that is it for today. See all of you on Wednesday, and let’s hope the heat doesn’t melt all of you – as it is pretty hot out.
Me, at 2:55 PM, on Wednesday July 15th, 2015. It is a bit dark in the room.
Hello everyone! So today is Amazon’s Prime Day, or their version of Black Friday in July. It is to celebrate their 20th anniversary as a company, and they have a variety of sales for it. Some are good, some are bad, and all of the good ones are selling out within seconds. So, yesterday, I was a bit adventurous with eating and I had some Chicken Fries from Burger King for dinner, along with some McDonalds fries. Surprisingly, the fries went better than the Chicken Fries. The chicken was a bit too… flavorful for me – the typically mild, yet tasty, spices on the chicken fries made it rather unpleasant to eat, as my mouth is not used to having that much flavor, as I haven’t really had anything flavorful since May 27th, aka the day before chemo started. So, I got my last blood results from the NYC oncologist today so I can bring them to the local oncologist today. They decided to fax a bit more than that, though, so I have some records to look through, yay! More things that will get lodged in my memory.
So, back from the local oncologist and I read the records from my NYC oncologist – in his report from the first visit, he thought it was NK Cell Leukemia, and he even had ruled out a NK-T Cell Leukemia, and was thinking of other possibilities – but as we now know, it is Chronic NK Cell LGL Lymphoma with T-Cell involvement (aka )Chronic NK Cell LGL T-Cell Non-Hodgkin Lymphoma). So, the local oncologist liked my numbers – my weight is the same as it was last time I was at his office, so that is good. I asked him about my spleen, and he said he could lie to me and say it has shrunk, but truthfully, it will not shrink much in the course of two weeks – so it’ll take a little while longer for the spleen to shrink. Boo. So, I see him again on Thursday, July 30th – as I have another doctor’s appointment that day, so combining the two into one day will be efficient.
Me, at 1:34 PM on July 13th, 2015. I am a bit tired.
Happy Monday everyone!
I am on a lower dose of prednisone now, yay! Didn’t do much of anything this weekend. Sat around the house, napped on Friday, took a laxative on Saturday – the usual. A bit tired today, but that’s to be expected. Not a very long update today – I see my local oncologist on Wednesday to get an update on how my blood looks, that should be fun. I enjoyed last week – it was a week without a blood draw! Had some ravioli and sausage for dinner yesterday, it was rather tasty. Haven’t eaten lunch as of the time of typing this (1:36 PM), but I am still full from breakfast, which is in line with my normal appetite, to be completely honest. Still haven’t taken the Megace, I am going to ask the local oncologist about it on Wednesday, because honestly, I don’t need it every day, and my appetite seems to be getting back to normal, for the most part. We’ll see how my weight is on Wednesday – I think one of the functions of the Megace is to make my body retain water, which isn’t really weight gain, which seems sort of silly. So, now it is Monday evening (6:45 PM, to be specific) and my day went as they have gone lately – sat around on the couch, watched TV, the usual. Ate a slice of white pizza for dinner. It was good. So, see you guys again on Wednesday.
Happy Wednesday everyone! So, the last few days have been uneventful. Although I DID start to get my appetite back in the last few days – yay for a lower dose of prednisone! Speaking of prednisone, tomorrow I continue the taper and will be at 30 mg once a day for one week. Only a few more weeks and I am done (I actually finish the day after my birthday. Boo.) with the prednisone (Forever, I hope. Although sometimes I get it when I am sick).
Looked at some more dogs to adopt – we’re looking for something that is house-trained, 6 months to 18 months old (though I would prefer something closer to the younger end), and from a rescue or shelter (Puppy mills are just disgusting – also, sounds too much like pepper mill). Tomorrow, I get to see my therapist for the first time since April or May – i’ve been doing phone sessions every week since then. Yay! Some semblance of routine. I’m going to cash in all of the scratch-offs I won and never redeemed – before the diagnosis, but after the abnormal blood work, I kept winning scratch off tickets that I was buying – that’s how I knew something was up. I never win scratch-offs – I always win in the casino. So, that is how the past two days have gone for me, hope it has gone well for all of you out there, and tomorrow I take the methotrexate, so I should be tired Friday through Sunday. Hopefully I keep my appetite, and it turns out the prednisone was causing the appetite issues!
Me on Monday, July 6th, while watching Let’s Make a Deal
So, the past few days have been okay. The new dosage of prednisone isn’t that bad – just makes me a bit nervous before I have to take it, because, well, 50 mg tasted horrible. 4×10 mg is much easier than 1×50 mg. So, on Friday, I was very tired from the Methotrexate. On Saturday, I was pretty tired, but my stomach was not very unsettled, so I had a cheeseburger for dinner, it was very good. Yesterday, my family (My parents and my brother) and I went out to look for a pet to adopt. We are most likely going to adopt a dog, but we are in the beginning stages of looking at animals to adopt. We’re going to adopt either from a rescue, or the Humane Society or ASPCA, because adopting from breeders and puppy mills are just ugh – and anyway, mixed breeds are just healthier.
So, yesterday was my town’s fireworks (They don’t do it on the 4th because it’s cheaper not to) and it was enjoyable – I might’ve stood for too long talking to my cousin (and updating her about how I am doing with treatment), so my spleen & legs were a bit uncomfortable after standing around for a while – but nothing that lying around after getting home doesn’t fix. Also, I ate a bit of funnel cake. Unsure as to how wise that was, given my recent eating habits, but ohmygod it was so indulgent and crunchy. I think the prednisone at a lower dosage is trying to make me gain weight – I keep having the urge to eat salty things, which I know is bad, because it will make me swell up like a balloon. Evil prednisone. I don’t want to swell up. Last time I did, my feet turned purple. Let’s avoid that.
My Monday is going well so far. I am watching The Price is Right (it’s 11:10 AM) and I am about to take my prednisone soon. Ate some frozen organic Maple Waffles from Whole Food this morning. They were pretty good. They had little chunks of like crystallized maple scattered throughout the waffle. Yum. For lunch, I had egg and cheese on a hard roll and for dinner I had a hot dog with a pretzel bun. It was pretty good. So my Monday has gone well. It’s now 6:53 PM on Monday.
So, last night I was talking to some people and they said that I should start posting random medical facts about myself, because apparently they are interesting. So here’s some fun facts:
1. I do not remember any dreams that occur. I just fall asleep, then I wake up when my alarm goes off. No dreams are remembered. The best theory by neurologists? Well, they’ve seen a small spike in electrical activity during EEGs – it is a generalized (aka all across the brain) spike that lasts about 3 seconds, and usually occurs once a night during REM sleep. It was rather odd.
2. A frequent phrase I hear from doctors? “This is very interesting. I have only heard about this in medical journals/textbooks/medical school!” It can be entertaining. At least the doctors don’t call me a miracle like all of the nurses do – that gets a bit boring after a while.
3. My first neurologist was a very good, but very eccentric man. He loved my case because it was so odd. The guy is very eccentric – he is licensed in pediatric neurologist, adolescent psychiatry, and clinical genetics. So, his interests were varied, to say the least. Every time I would see him, he would have me do the standard neurological tests, along with some other stuff. Then he’d turn to whatever parent drove me there and say “Okay, now you do it!” He really liked to see my parents do the activities, I assume that ties into his genetics background. He was a *great* neurologist. He still practices here in NJ, but he doesn’t see patients with epilepsy, as far as I know – too much risk, and he has a kid who is like 10 years old now.
So, that’s it for now. I’ll post again on Wednesday. Not much is going to happen, so the next blog post might be a bit shorter than this one :P.
Me, at 10 AM, just got in the car to go to my NYC oncologist.
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: Here is a fun sign I saw in NYC traffic. Read it top to bottom. Also, LHBT sandwich.
