I started my first course of Rituxan infusion yesterday. It went alot better than anticipated. 6 hours was a bit boring though. I packed the equivalent of a road trip's worth of things to do- but I found myself so spaced out I couldnt focus on anything not even tv. Side effects that made an appearance were hives on my face and a sore throat. Both of which were quickly alleviated with some Benadryl. In fact I felt more ill and woozy from that than from the Rituxan itself! I didnt get any side effects after I was done either. So that's 1 down, 3 more to go. Wish I had something more exciting to report about the experience, but maybe time will tell in the next couple weeks if there's any side effects of note that pop up.
Thursday, August 25, 2011
Plugged into the Martix-an
I started my first course of Rituxan infusion yesterday. It went alot better than anticipated. 6 hours was a bit boring though. I packed the equivalent of a road trip's worth of things to do- but I found myself so spaced out I couldnt focus on anything not even tv. Side effects that made an appearance were hives on my face and a sore throat. Both of which were quickly alleviated with some Benadryl. In fact I felt more ill and woozy from that than from the Rituxan itself! I didnt get any side effects after I was done either. So that's 1 down, 3 more to go. Wish I had something more exciting to report about the experience, but maybe time will tell in the next couple weeks if there's any side effects of note that pop up.
Thursday, August 18, 2011
Boney M....
Months ago when the possibility of getting a bone marrow biopsy/aspiration was mentioned, I started down a google rabbit hole of scary shit. I pretty much freaked myself for months afterward and up until last Friday when I finally got it done, I was a wreck. Thinking about it would make me burst into tears (which I was probably already doing anyway on the meds). So...if you're anything like me and have come across this post while searching for any info on what it's like...welcome!
I had researched it so much I already knew what the procedure was, but prior to the biopsy I had mentioned to my hematologist if at all possible I'd like something for the anxiety. Being the saint she is wrote me up for an ativan on biopsy day. Come Friday I went in for my CBCs, popped the pill, and then stared at the procedure room door while the nurses came out calling names. Once inside the room I was surprised they had music on (oldies) and were all smiles. She went through everything she was going to do but I just kept staring at the bed/table they had ready for me. I warned her I'd probably swear alot or scream or cry...I was so sure I would. I didnt need to change into a gown surprisingly, since all she did was pull my underwear down a bit and that was all. I'm more comfortable lying on my left side so I let her "dig in" to my right hip, and the added bonus was that I got to face the wall where there were no trays or instruments present. The lidocaine was administered and I kept waiting for the burning feeling I had read oh-so much about, but it never came. As for what it felt like it was kinda just like a bee sting. After the initial shot I didnt feel the one following. All good.
I didnt care to nor was interested in looking at the needles they would be using. Whats the point? (no pun intended) It made it alot easier. Once they start with the actual aspiration, it didnt hurt so much as feel really weird and uncomfortable since having an object touch your bone is not something you're used to. For the aspiration, there was mostly alot of pressure and a bit of pain for about 5-10 seconds, and that was that part down. I was surprised I didnt cry, but I winced and grumbled like a champ throughout the whole thing. She topped me off with more lidocaine, and went in for the kill shot (pun intended)...the chunk o' bone. I was comforted to know I was more than halfway done. It felt like a mini corkscrew for a bit, then she counted to 3 as she was ready to get her sample. If you're a guy you wont get this, but it felt like the worst period cramp ever. Like a pulling sensation through my entire pelvic/hip region. This time it was a bitchy loud moan I let out, but again, it only lasted 5-10 seconds. No tears. Then she took the needle out and I was done. I cried more in the weeks before than when I was getting the damn thing done!
I was able to get up shortly after after she put a giant band-aid on the area. The area did not hurt at all, just discomfort and soreness. I went home to lay down and watch a Hoarders marathon and eat some take out.
Tips:
- Don't google things you don't want the answers or images to...especially images. There's no need.
- Honestly having music in the room helped me personally since I didnt have to focus on the clinking of medical instruments. Bring a small radio or ipod if its ok with you and your nurse/doctor.
-If you're that worried ask if they can give you anything for the anxiety beforehand.
- Stop thinking about it after you read this. It's alot quicker than you think and alot less scary. If I can do it, you can as well!
Here's some Boney M, the official disco group of biopsies, to distract you with their lip syncing (same producer as Milli Vanilli no less) and loud outfits in case you're still feeling crappy and worried.
I had researched it so much I already knew what the procedure was, but prior to the biopsy I had mentioned to my hematologist if at all possible I'd like something for the anxiety. Being the saint she is wrote me up for an ativan on biopsy day. Come Friday I went in for my CBCs, popped the pill, and then stared at the procedure room door while the nurses came out calling names. Once inside the room I was surprised they had music on (oldies) and were all smiles. She went through everything she was going to do but I just kept staring at the bed/table they had ready for me. I warned her I'd probably swear alot or scream or cry...I was so sure I would. I didnt need to change into a gown surprisingly, since all she did was pull my underwear down a bit and that was all. I'm more comfortable lying on my left side so I let her "dig in" to my right hip, and the added bonus was that I got to face the wall where there were no trays or instruments present. The lidocaine was administered and I kept waiting for the burning feeling I had read oh-so much about, but it never came. As for what it felt like it was kinda just like a bee sting. After the initial shot I didnt feel the one following. All good.
I didnt care to nor was interested in looking at the needles they would be using. Whats the point? (no pun intended) It made it alot easier. Once they start with the actual aspiration, it didnt hurt so much as feel really weird and uncomfortable since having an object touch your bone is not something you're used to. For the aspiration, there was mostly alot of pressure and a bit of pain for about 5-10 seconds, and that was that part down. I was surprised I didnt cry, but I winced and grumbled like a champ throughout the whole thing. She topped me off with more lidocaine, and went in for the kill shot (pun intended)...the chunk o' bone. I was comforted to know I was more than halfway done. It felt like a mini corkscrew for a bit, then she counted to 3 as she was ready to get her sample. If you're a guy you wont get this, but it felt like the worst period cramp ever. Like a pulling sensation through my entire pelvic/hip region. This time it was a bitchy loud moan I let out, but again, it only lasted 5-10 seconds. No tears. Then she took the needle out and I was done. I cried more in the weeks before than when I was getting the damn thing done!
I was able to get up shortly after after she put a giant band-aid on the area. The area did not hurt at all, just discomfort and soreness. I went home to lay down and watch a Hoarders marathon and eat some take out.
Tips:
- Don't google things you don't want the answers or images to...especially images. There's no need.
- Honestly having music in the room helped me personally since I didnt have to focus on the clinking of medical instruments. Bring a small radio or ipod if its ok with you and your nurse/doctor.
-If you're that worried ask if they can give you anything for the anxiety beforehand.
- Stop thinking about it after you read this. It's alot quicker than you think and alot less scary. If I can do it, you can as well!
Here's some Boney M, the official disco group of biopsies, to distract you with their lip syncing (same producer as Milli Vanilli no less) and loud outfits in case you're still feeling crappy and worried.
Wednesday, August 17, 2011
Part II - Meouch
The process of going through any disease is a slow and frustrating one. Every week I have to go to the hospital for blood tests (CBCs), and every week my platelet levels are different. Sometimes they're up, most times they are down. So how did this all happen? Long story short: I got scratched by my roommates cat when I accidentally stepped on her tail. I got a leg infection. I developed ITP as a result of the infection itself. And that was it. No I don't blame the cat...she's awesome:
Also the doctors had mentioned I could have gotten any other kind of infection and this may have happened. Anyway, so my hematologist put me on the pills and said they usually give it 6 weeks to see if a patient improves, if they don't then the next line of treatment is talked about. She gave it 3 months, and I thank her wholeheartedly for trying to buy me some time. Since the steroids didn't work I finally had my "next phase" begin last friday with a bone marrow biopsy. More on that good time later...
Also the doctors had mentioned I could have gotten any other kind of infection and this may have happened. Anyway, so my hematologist put me on the pills and said they usually give it 6 weeks to see if a patient improves, if they don't then the next line of treatment is talked about. She gave it 3 months, and I thank her wholeheartedly for trying to buy me some time. Since the steroids didn't work I finally had my "next phase" begin last friday with a bone marrow biopsy. More on that good time later...
Tuesday, August 16, 2011
Part 1 - Sick of IT(P)
The last thing I need is another blog, but this one's a little different...first an introduction.
My name is Michelle, I'm 28 and I have an auto-immune disease called ITP, or idiopathic thrombocytopenic purpura if you're feeling sexy. It's a platelet disorder in which my platelets are constantly being killed off, resulting in a really low count. So, normal individuals may have a platelet count of 150K...and at my lowest while I was in the hospital I was at 3k. So I had bruises and small clots all over my skin. At that level it can cause a stroke if I was to fall, or bleed to death if I was to cut myself badly. Awesome right! :/
Anyway, like many individuals with a chronic illness or other disease, I'm on Prednisone. This shit medication has become a daily struggle, so in future posts I'll share some things I've learned while being on it.
Oh, and why is the blog called Sandwich Tears? A couple weeks ago I was at a diner and my chicken sandwich started falling apart and I did the same. Stupid right? Thats Prednisone for you. You cry at the drop of a hat. Or in this case several pieces of falling chicken.
My name is Michelle, I'm 28 and I have an auto-immune disease called ITP, or idiopathic thrombocytopenic purpura if you're feeling sexy. It's a platelet disorder in which my platelets are constantly being killed off, resulting in a really low count. So, normal individuals may have a platelet count of 150K...and at my lowest while I was in the hospital I was at 3k. So I had bruises and small clots all over my skin. At that level it can cause a stroke if I was to fall, or bleed to death if I was to cut myself badly. Awesome right! :/
Anyway, like many individuals with a chronic illness or other disease, I'm on Prednisone. This shit medication has become a daily struggle, so in future posts I'll share some things I've learned while being on it.
Oh, and why is the blog called Sandwich Tears? A couple weeks ago I was at a diner and my chicken sandwich started falling apart and I did the same. Stupid right? Thats Prednisone for you. You cry at the drop of a hat. Or in this case several pieces of falling chicken.
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