A week ago Tuesday I had a new infusion scheduled. I read all of the pros and cons for this new “miracle” drug. For this one there are many things to think about. On all of the other infusions that I have tried over the year(s) I have never really been worried or concerned. This one I was, no questions. In fact this one even warned that it was known to have fatal reactions from the 1st infusion. Scary. Right. I think so even if you don’t!
So this time I actually decided to have someone drive me to and from. Yes, I know, normally I drive myself and think nothing of it. I know I know… FREAK. But hey we already know that so we won’t linger on that subject!
This particular infusion takes 4 -6 hours. Nice, eh? And to think they don’t even offer entertainment at my doctor’s office!! I finally get all set up. First I have to get an IV push of Benadryl, IV push of Decadron (this stings and burns like CRAZY in case you were wondering) and some Tylenol. This has to all be given to me 30 minutes prior to my infusion. After waiting 30 minutes and taking my vitals, it seems I am still breathing and all is well. So they start the infusion. Not long into it, I start showing some signs. Signs you ask? First I start itching, show a bright rash all over my face, neck, chest and shoulders and welts all over my head. They say that is a normal reaction. Oh good… I feel so much better now. But wait…. I can’t just be like everyone else. Oh no, not me. Before you know it, I am freezing. I mean I am so cold, I have 2 blankets on me and I am still shaking. Then my head starts pounding and all of a sudden I can barely swallow. You know when you start to get a sore throat and it itches way down in your throat and you can’t itch it? That is what my throat and ears felt like. Yet at the same time, I am having seriously difficult time breathing. And my body… talk about pain… I have NEVER felt such horrible pain in my life. I hurt in places that I didn’t know could hurt that bad. So the nurse came in to check on me and asked how I was doing. So I told her and she turned on the light….and then her eyes got really BIG. So she obviously wasn’t going to hide what she saw. My face was swollen; my eyes were almost swollen shut. I thought I felt something but I didn’t realize it was THAT BAD. Guess I scared her. She ran out of the room (poor little old Korean nurse) to get the Doctor. He came in with another nurse. They started poking and prodding. I often wonder if they think they are really going to discover anything when they do that, because let’s face it they NEVER do. Anyway, he advises them to give me another dose of Decadron and slow the infusion rate down. Lovely. So this will mean it will take longer. And yet still no entertainment. Now they bring in heat packs to lay over me and try and warm me up and coffee for my throat. I don’t drink tea so I guess they felt coffee was the next best thing.
Thank goodness I didn’t have to drive myself home… let me tell you I would have been trying to figure out who I could have called to come pick me up.
Let’s just say the rest of the day and the next day I was pretty sure I was dying. I was beyond exhausted. I was so tired it was scary. I figured it was slow, horrible death. I was suffering for everything, you know all those little things we all do and say we will pay for later… well I figured now was my time to pay. Any white lies (btw I have never told one of those (oops there goes another white lie)), office supplies that were “borrowed” , or stories that might have been embellished just a tad bit, I just knew I was paying for everything and then some.
Thursday (2 days later) I woke up and was like a different person. Granted I was still exhausted but my pain was almost gone. I know. Did you hear that? Almost gone. I almost had no pain. It was so surreal. I almost didn’t believe it. I was in shock. I was so excited. I kept thinking OH MY GOD what if this is THE one. What if this is the one that helps me. All of this time and finally we have found it. OH MY GOD. I wasn’t completely pain free but the amount that I did have I was totally ok with, in my mind it wasn’t even worth complaining about. I was exhausted but almost NO PAIN. Can you tell I was THRILLED?
I will take whatever I can get… it was very short lived. It lasted a few hours. I have hope that with my next infusion (8/17) the side effects will not be as bad and I will have a longer “pain free” time. Trying to stay positive. Hopefully my “death warmed over state” won’t last too long this time.
So this time I actually decided to have someone drive me to and from. Yes, I know, normally I drive myself and think nothing of it. I know I know… FREAK. But hey we already know that so we won’t linger on that subject!
This particular infusion takes 4 -6 hours. Nice, eh? And to think they don’t even offer entertainment at my doctor’s office!! I finally get all set up. First I have to get an IV push of Benadryl, IV push of Decadron (this stings and burns like CRAZY in case you were wondering) and some Tylenol. This has to all be given to me 30 minutes prior to my infusion. After waiting 30 minutes and taking my vitals, it seems I am still breathing and all is well. So they start the infusion. Not long into it, I start showing some signs. Signs you ask? First I start itching, show a bright rash all over my face, neck, chest and shoulders and welts all over my head. They say that is a normal reaction. Oh good… I feel so much better now. But wait…. I can’t just be like everyone else. Oh no, not me. Before you know it, I am freezing. I mean I am so cold, I have 2 blankets on me and I am still shaking. Then my head starts pounding and all of a sudden I can barely swallow. You know when you start to get a sore throat and it itches way down in your throat and you can’t itch it? That is what my throat and ears felt like. Yet at the same time, I am having seriously difficult time breathing. And my body… talk about pain… I have NEVER felt such horrible pain in my life. I hurt in places that I didn’t know could hurt that bad. So the nurse came in to check on me and asked how I was doing. So I told her and she turned on the light….and then her eyes got really BIG. So she obviously wasn’t going to hide what she saw. My face was swollen; my eyes were almost swollen shut. I thought I felt something but I didn’t realize it was THAT BAD. Guess I scared her. She ran out of the room (poor little old Korean nurse) to get the Doctor. He came in with another nurse. They started poking and prodding. I often wonder if they think they are really going to discover anything when they do that, because let’s face it they NEVER do. Anyway, he advises them to give me another dose of Decadron and slow the infusion rate down. Lovely. So this will mean it will take longer. And yet still no entertainment. Now they bring in heat packs to lay over me and try and warm me up and coffee for my throat. I don’t drink tea so I guess they felt coffee was the next best thing.
Thank goodness I didn’t have to drive myself home… let me tell you I would have been trying to figure out who I could have called to come pick me up.
Let’s just say the rest of the day and the next day I was pretty sure I was dying. I was beyond exhausted. I was so tired it was scary. I figured it was slow, horrible death. I was suffering for everything, you know all those little things we all do and say we will pay for later… well I figured now was my time to pay. Any white lies (btw I have never told one of those (oops there goes another white lie)), office supplies that were “borrowed” , or stories that might have been embellished just a tad bit, I just knew I was paying for everything and then some.
Thursday (2 days later) I woke up and was like a different person. Granted I was still exhausted but my pain was almost gone. I know. Did you hear that? Almost gone. I almost had no pain. It was so surreal. I almost didn’t believe it. I was in shock. I was so excited. I kept thinking OH MY GOD what if this is THE one. What if this is the one that helps me. All of this time and finally we have found it. OH MY GOD. I wasn’t completely pain free but the amount that I did have I was totally ok with, in my mind it wasn’t even worth complaining about. I was exhausted but almost NO PAIN. Can you tell I was THRILLED?
I will take whatever I can get… it was very short lived. It lasted a few hours. I have hope that with my next infusion (8/17) the side effects will not be as bad and I will have a longer “pain free” time. Trying to stay positive. Hopefully my “death warmed over state” won’t last too long this time.
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