Think Again

(This post will appear on both my blogs…so if you follow both you only need to read this one today :)

The bad days after chemo continued with all the aches and pains and constant diarrhea, bleeding, and fistula problems. On Sunday my temperature was back up to 101.5 and my heart rate was high. My hubby called the oncologist on call and he of course wanted me to go to the emergency room. So off I went thinking they would draw some blood, check me out, and send me home…Think again!!! Not only was my temp. and heart rate elevated, my blood pressure was high also. Their major concerns were of course infection. They put me on a heart monitor, drew lots of blood, started me on fluids, and did a chest x-ray. The next concern was “did the chemo flare the crohns?” If you haven’t guessed already they admitted me. They said they wanted to keep an eye on me for the next 24 hours. They gave me an IV antibiotic and settled me into a room and hung an isolation sign on the door…no germs in…no germs out! They increased the dose of Flagel. Clear liquids only and a pelvic CT Scan in the morning. They also hung another sigh behind me to alert other nurses



A precaution due to the lack of lymph nodes in both upper arms

I got absolutely no sleep that night. My IV pump (aka Fabio)





KAS don't look at the next picture :)




was SO LOUD. If I had something nearby resembling a baseball bat I would have beat the crap out of it. Around 4:00am I finally just turned the TV on. Early Monday I had my CT Scan and was expecting to get some real food but they still had me on clear liquids. When the GI from my group who was doing rounds and who I didn’t like at all came in (not my GI by the way) she was #1 rude to my husband and #2 gave me a hard time about letting me have a general or even a soft diet. Lets see…you want the diarrhea to go away but if all that goes in is liquid then ummmm what do you think is going to come out??? Besides that I know my body better than anyone esp. someone who has only looked at me for 5 minutes. I could see if I were in pain or had no appetite. She finally agreed to let me try a general diet and if things got worse I would have to go back to liquids. So she leaves and guess what??? She doesn’t write the order for a general diet. The nurse was wonderful. She kept trying to call and get an order. Of course the beotch would not call back. Four calls and hours later another doctor from the group called back and gave her the order. He said start with a general and if I have a problem tweak it. THANK YOU. In the mean time many other doctors came in, my PCP, the infectious disease doctor, and oncologist who all agreed I needed to stay another day. My white count was high but that was most likely due to the chemo. My potassium was low so they gave me some to drink :( Now if you’ve never had liquid potassium you’re lucky because it tastes like crap. After gagging my way through I got about ¾’s of it down.

Fluids, fluids, and more fluids = lots of peeing. Hubby brought me my iPod so that I could plug my ears with Christmas music during the night (to drown out Fabio). It worked…I slept very well. Tuesday was another full day of IV fluids. Fabio and I are becoming very close…he follows me around everywhere. They are still waiting on blood work results to rule out certain infections. The GI beotch doctor hasn’t been back, just her PA who is very nice. They are leaning towards this not being a crohns flare but just a bad time with the chemo. But just to be sure they want me to have a pelvic ultrasound tomorrow…yes another night with Fabio. The fluids have been very helpful. I haven’t had any muscle or bone pain since they started them. I definitely was severely dehydrated. I slept well again with my Christmas music. Wednesday morning I went down for the ultrasound. It turns out the CT Scan showed a little something something near the uterus and they wanted a closer look. Well if they would have said something I could have told them it was probably the same little something they saw on my CT Scan in the spring which turned out to be fluid in my fallopian tube…that’s exactly what it was. The infectious disease doctor came in and said I was negative for all the infections they were testing for but thought they might keep me for a few more days. NOOOOOOOO. My oncologist came in and decided that she did not want me to have the port put in. She is going to reduce the dose of chemo and have me come in early that day and if I appear to be dehydrated again they will give me fluids and if need be more fluids between then and the next chemo. If however I have another bad time with the chemo they will probably not do anymore. Then my PCP came in and said I could go home YAY. I got myself dressed and waited for my discharge instructions and the nurse says your potassium is still low so after I get that for you you can go. NOOOOOOO…she comes back with a pill…are you kidding me…this comes in a pill??? Where was your stupid pill a few days ago when I was gagging??? I took it and then on my way to Home Sweet Home!!!

Xoxoxo
Love, Laugh, and Always know where the nearest bathroom is

Good Days and Bad Ones

I had a very busy couple days this week…since we last talked I’ve had my second jiffy boob appointment. The second fill went well. He didn’t pour the saline all over me this time :) I can definitely see some puffy little boobs forming. However one is filling up higher than the other :/ I know this is normal and they will eventually match. I still can’t really feel anything but some tightness while he is filling. Fortunately my right side is numb where the port is so the needle doesn’t hurt going in. Unfortunately the left side isn’t numb and does hurt blah. After this fill there seems to be a little less skin under the arms so that is more comfortable. I still have a hard time sleeping and found that sleeping on the living room couch is the most comfortable for now.

Last week I called to make my next appointment with the oncologist (she wanted to see me a week after my PET CT) but her office said she wasn’t available till the 12th of December. She (the doctor) called me back that afternoon and said to come to her office right after my PET CT and she would squeeze me in even if they had to page her during her rounds. She said she wanted to keep a close watch over me and boy is she. I haven’t even started my chemo yet! I had my PET CT on Wed. (the 24th) which took about an hour and a half then I went to see the oncologist. I was surprised to get in quickly but I had to wait a long time because she wanted to get the results of the PET CT before I left. They didn’t have a preliminary report ready so she called and told them she wanted it read NOW. We waited for them to call back and Praise the Lord it was clear. I am so relieved.

My blood work showed that my iron is low so I have to go on Monday and Thursday for an iron infusion. I also have to have the picc-line put in ASAP. I tried to schedule that when I got home from my appointment but they were gone and closed till after the holiday. They won’t be back in the office till Monday. I called the oncologists office and they are going to call on Monday to get it set up. The plan is to get all that done next week and start the chemo on December 6th. She wrote out all my scripts which included the Flagel for the fistula, a drug for nausea, the steroid to take the day before the day of and the day after the chemo, some Ativan to help me relax, and a cranial prosthesis aka wig :/ So that was a very very long day and by the time I got home I was so exhausted and in a good bit of pain. This upset me a lot because it was my babies 18th birthday and I was not able to celebrate it at all. I was curled up in a ball on my couch and the more I thought about it the more upset I got. If all that wasn’t bad enough I started to cry and hoped that B didn’t hear me but he did. He sat and hugged me for a while and that helped a lot but I still felt so bad that I couldn’t celebrate and on top of that I was sitting there crying. Hubby did go get him a cake and we sort of sang (he didn’t really want us to) and then we had cake. That horrible day was followed by Thanksgiving. J was home from school and I felt better but not great. Wonderful hubsie cooked the entire dinner (thankfully he is a good cook ;) and it was wonderful. Then the four of us watched some movies including Elf (one of my favorite Christmas movies). It was a wonderful day! I know I will continue to have good days and bad days but no matter what type of day I am also counting my blessings!!!

And now I’ve started my Christmas shopping….on-line of course! Oh and the Pre-lit Christmas tree is up…now I just need to get it decorated…any volunteers :)