Quantcast
Channel: » family
Viewing all articles
Browse latest Browse all 6

Day 72: The Comeback Kid

0
0

Greetings earthlings! Tremendous news afoot. Life decided to throw me a frickin bone for once because it decided I was getting close to playing in traffic or something. I hesitate to say it, especially because in my last post I was all angry and depressed and “rahhh I’m never getting better” but …. I might be getting better? (Sheepish face.) I don’t want to jinx anything but there is reason to believe that the Rituxan is finally working! Reason meaning a platelet increase of 26k since last week (from 34k to 60k) without any extra pulse of steroids or anything. I’d been in the 20’s and 30’s for a few weeks prior, so this was unexpected!

Because prednisone, duh.

Because prednisone, duh.

Not to get into a tremendous amount of detail but I got a new doctor and a new practice which is called The Something (not really) Cancer Center- and it’s basically like a Cancer Factory. No, I don’t have cancer, but that’s where you send people with hematological problems. It is enormous and there are a million rooms. My mom actually came with me this time, and while we were waiting they called my name over the loudspeaker (that’s how big it is) for me to come to the lab for my blood draw. I just looked up at the ceiling and yelled back “But I don’t know where the lab even is!” Beautiful space, needs more signage. I felt like I was on the Trueman Show, my mom was laughing. But everyone was SUPER nice there and it is a great place. Much different from the other practice I was going to where my hematologist/oncologist came in sick and didn’t wear a mask and every time I go up to the front desk I feel like the secretary is going to fire a round of bullets into me because she is so incredibly unhappy with her job and/or just NOT a people person.

On the way into the appointment I was NOT in a good mood. I have a perpetual headache which makes me snappy and I have giant blood blisters in my mouth so I thought that the Rituxan still wasn’t working. I snapped at my mom and then said, “I have a headache, can you tell?” And she was like, “Oh, is that what it is? I thought Jill just took over your body” (Jill is my sister and she can be a huge bitch- love you jill!). Very funny.

These are purpura (the little ones are pettechiae). These are the blood blisters (they're spontaneous) I get in my mouth at way higher platelet counts than other people with ITP. Super tricky and annoying.

These are purpura (the little ones are pettechiae). These are the blood blisters (they’re spontaneous) I get in my mouth at way higher platelet counts than other people with ITP. Super tricky and annoying.

After we spent a super long time talking to this new doctor about my extensive medical history,  and how a splenectomy is probably my best option because I’m so young and I don’t want to be on Nplate (weekly injections) for the next twenty years because that is pretty inconvenient, we get onto the physical assessment portion and he’s like, “Ok, let me see these spots in your mouth.” I show him, because yes, there are purpura in my mouth- and he does a “hm” and asks me to guess what my platelets are. I hate this game. Because they only tell you to guess when they know you’ll be wrong- like the first time I ever had to guess what my platelets were in the ER. I said, “oh I don’t know 40k” because I sensed that they were higher from the fact that he was trying to trick me but I still had all this mouth bleeding, and most people don’t have mouth bleeding until 20k but I have ehlers danlos so I’m super defective in all areas of life. That’s when he told me 60k! Which is just crazy! All of my bodily cells did a happy dance (except for my B-cells because they’re dying- RIP b-cells). I have not had such a joyous life-changing moment in a while. The last time was probably when I passed my NCLEX. Moments like that I can honestly count on my fingers. That’s how special it was. Because it means

EVERYTHING HAS JUST CHANGED FOR THE BETTER. ABOUT. FREAKIN. TIME.

I RESPOND TO RITUXAN (which means that in the future, when it wears off, I can just do it again and I should respond then as well!)

I (may be- trying not to jinx myself here) AM HEADING TOWARD REMISSION

and finally- I DONT HAVE TO GO TO THE DOCTOR NEXT WEEK AT ALL! Which is just mind-blowing in itself since I have been to the doctor once or twice a week for the last three months. No blood draw next week! No waiting room! No co-pay! No anxiety about bleeding to death! None of that!

I might be able to have a drink! I might be able to go to Six Flags! (except it probably closes soon, right?)

And best of all, I can start to taper off prednisone for good (well, for now), but I’m actually choosing to wait another two weeks so I can get my IUD next week, because when you taper your platelets drop and I don’t want them to get too low again that I can’t get the damn thing. TMI! Don’t care! Don’t care one bit. Super happy.

Also- in the realm of all things that are right with the world- my face is definitely coming back. I now have slight cheek definition on both sides and my second chin is probably about half the size it used to be. I’ve also been going to the gym, which is sort of comical in my new size…. and I’ve been wearing my dads clothes. Laugh it up, clown.

I am still basically narcoleptic, I honestly sleep about 18 hours a day, but I KNOW the prednisone taper will help a lot so I just started looking for jobs tonight. There are no NICU positions to be had, so I think I will settle for Labor and Delivery for now because MOMMA’S GOT BILLS TO PAY. Lots of them.

I just hope that I get at least a year of remission out of this dose of Rituxan. Complete remission (if your platelets get back up to 150k or higher) usually lasts a year, in 25% of patients it can last 5 years. Partial remission (platelets of 50k or higher, but lower than 150k) doesn’t last as long. So if I even stayed at 60k on no steroids I’d be happy, but god damn, if you want to shoot back up to normal range by all means GO FOR IT!!!

I am scared of relapsing but I will care less after I’ve established myself with a job and some benefits so then at least I can get like short term disability or something. This time I got completely screwed out of any kind of assistance because I just moved back from VA and haven’t worked in NY in over two years, and just when I’m eligible for SSI… it starts working! But I’d rather have it work than not work so that’s ok.

I can’t tell you how amazing it is to be on the other side of this hump, even though I still feel like crap. Because at least now I KNOW I’m almost back to somewhat normal. I’m almost a fully functional person. I’m almost off prednisone.

And while this has been the most boringly torturous and at times really depressing period of my life (all 71 days), I’m grateful for the people that have piped up to contact me and be supportive. It’s people like you who make me remember why I wanted to be a nurse… because I love people and I know how much it can mean to someone when you just take the extra step to be nice. The waiting game was so psychologically hard, so hard that I was ready to rip my spleen right out with my bare hands. I have never been a patient person and I have always been a control freak (don’t put me in a group project because I will just do the whole damn thing) so this was definitely a rude awakening.

This was also a lesson in how I’m never going to bitch about my normal body again because in comparison to what I’m working with now- IT WAS AMAZING. Never, EVER take your health for granted. I may be tired and intensely sore when I wake up every morning but as long as my body isn’t trying to kill me I’ll be happy from now on. Give me the arthritis, give me the allergies, give me the sciatica, I don’t care! As long as my blood is clotting, I’m good.

IMG_2138

This whole thing has given me an entirely new perspective on a lot of things and a lot of people, primarily my family. When I was living alone and would come back to visit, I could stay like two days because my family annoyed the hell out of me and I was jonesing for my tiny little apartment of solitude 200 miles away. But now that I’m here every day, all day, with my family, and I see how patient they’re being with me and how hard they all work while I just sleep all day, I couldn’t have asked for a better family. Also, for their completely sick sense of humor. This weekend we were honestly doubled over in pain during dinner making fun of each other (namely me). But also it’s so great to live in a house of people with such big hearts that the animals outnumber the two-legged animals and we treat them like family members. They’re honestly hysterical. Last night I was watching TV in the wee hours of the morning on the couch and was laughing hysterically to myself because my cat is so spastic. It’s just little things like that that make me so happy to be alive, especially now that alive means getting on with my life!

Also, I am thankful for ice cream and funfetti cake. What wonderful inventions.

And because I’m in a good mood- check out my new pot belly and the fact that I STILL have marks from these enormous side hemorrhages from 11 weeks ago. ELEVEN WEEKS. I’m hoping they’ll go away when I get off the prednisone.

Day 72.

WAY WAY After. Day 72 (post diagnosis)

Day -2 (before diagnosis) and Day 7 (after diagnosis).

Day -2 (before diagnosis) and Day 7 (after diagnosis).


Tagged: autoimmune disease, being happy, cake, cancer, chronic illness, comeback, family, friends, funfetti, hard times, health, humor, itp, life, musings, nursing, platelets, prednisone, prednisone problems, remission, rituxan, sense of humor, spoonie

Viewing all articles
Browse latest Browse all 6

Latest Images

Trending Articles





Latest Images