Fluids, Fluids, Fluids, or Not???

I really should not wait so long between posts because I can’t remember everything that happened??? Well I’ll give it my best shot. I had my second chemo on the 28th (the lower dose). While it did go better then the first one (I at least didn’t end up in the hospital) I basically had the same symptoms within the same time frame. First the increase in diarrhea, the awful aches and pains, elevated temp., blood pressure, and heart rate. This time I took pain pills to ease the pain. The one improvement was that my fistula didn’t flare and I didn’t have nearly as much bleeding with the diarrhea. The day of chemo they gave me extra fluids and had me come in the next two days for more fluids. It was a holiday weekend so I went 3 days without fluids. Unfortunately I was not able to enjoy New Years Eve. That was one of my worst days and I was in bed by 10:30. We are going to have a redo sometime soon :) Because I continued to have severe diarrhea I did what they told me to do. I called and came in for more fluids that Monday after the New Year. The nurse told me if I continued to have severe diarrhea to call in the morning and come in again. I did so I called and came in. The one male nurse (I’ll call him nurse jackwagon), who doesn’t usually have me as a patient, came over and said “We all talked this morning and are wondering what to do with you?” (Really!) He told me that I can’t just call and come in for fluids when I’m not on the schedule. (You mean what they told me to do. Meanwhile the room is practically empty so I’m pretty sure I wasn’t jamming up their schedule.) Then he proceeds to tell me that I don’t look dehydrated and if we want the diarrhea to stop we shouldn’t be pumping in more fluids. I said that I thought the purpose was to prevent dehydration so that I don’t end up back in the hospital and that when I was in the hospital the diarrhea improved while I was on fluids. He then tells me (and this is very funny because a nurse should have some idea of what crohns disease is and the symptoms) that I need to do things at home to stay hydrated, that I need to eat foods that bind! I almost laughed right in his face. I said that I have crohns disease and there are no foods that bind me. He said I need to drink lots of fluids. I told him that I do. I drink lots and lots of water in addition to juice and milk. He asked if I drank coffee and I said no I might have 1 cup of tea a day. He said well you shouldn’t drink tea because it is a diuretic, or anything with caffeine. I told him I never drink anything with caffeine. He asked me how many times I went the day before I said 16 (you jackwagon). He was determined to convince me that my diarrhea was my fault. He said well if you are going to come in for fluids we need to put you on a schedule, how about Mon. Wed. Fri. I said fine. This lovely conversation was on a Tuesday so he said not to come in tomorrow just wait till Friday and then next week they will put me on for Mon. Wed. Fri. I told nurse jackwagon that since I have an appointment with Dr. A (the oncologist) on Tuesday I won’t come on Monday. I’ll just ask her on Tuesday what exactly I should do. Before I left the other nurse told me if I still had severe diarrhea to call and come in…Really??? So like a good little patient I went back on Friday and yes my diarrhea was still severe. Nurse Jackwagon didn’t come anywhere near me. When I was done the nurse said if you continue to have severe diarrhea to call, they have a doctor on call all weekend. Nurse Jackwagon really made me feel like I was being ridiculous and that I was a nuisance. At this point I am determined to never call again no matter what is happening.

I went on Tuesday to see the oncologist and she said my blood work has been good. She asked about the diarrhea and I told her exactly how many times a day I was going, when it starts, and how long it lasts (I’ve been keeping track). I told her I was confused about what to do as far as the fluids go, that I was doing what I was told and calling to go in when the diarrhea was severe, but the nurse said I shouldn’t be doing that and needed to be on a schedule. She looked everything over and she said based on when the diarrhea starts she would have the nurses put me on the schedule for the Mon. Wed. Fri. Mon. the week after my chemo. She also said I’m going to write in here that you can call if the diarrhea is severe and you need to come in for more. (Yeah right I’ll call and then be treated like I’m overreacting, no thank you) She said she wanted to push forward and do two more treatments like planned. She also wants to see me again in two weeks to make sure I’m doing ok. I can’t wait till this is over.

Oh the other funny thing is that in the middle of all this I called my GI doctor to see if I could take anything to help with the diarrhea. He prescribed Lomotil and told me if it didn’t help to call and they would arrange for me to come in and get fluids!!!

The good news is that just like the last time I am at the point where my poo is back to normal and I am feeling better (except for being completely exhausted). My next chemo is on the 18th and then only one more after that. I CAN DO THIS!!!
Later that same day that I saw the oncologist I went to Jiffy Boob for a fill up. He is very happy with my progress. I’m amazed at how big my new boobs are getting (I think I’m still less than half the size I use to be but I was quite big before :). I actually have some nice cleavage going on!!!

I registered for a class through the American Cancer Society. It’s called Look Good Feel Better. It’s a class to teach you how to care for your skin and apply makeup while you are going through chemo. I’m looking forward to that. Just about all the hair on my head is gone but I still have my eyebrows. The area where I always plucked is not growing anymore hair. I have lost some eyelashes but I still have enough that most people wouldn’t notice. I have no hair under my arms Yeah and the hair on my legs has stopped growing so I don’t have to shave them either Yeah!!! I’ll let you know how the class goes.

xoxo