Here you will find any journal entries I have written since all of this has begun. They are displayed with the most recent at the top. At the end of each journal entry, you can either view comments from others who have read that entry or you can post your own comment.
Instructions to post a comment:
1) Click on "Post Your Comment" (in the lower right corner of each message)
2) Enter your name
3) Enter your email address
4) Enter your comments
5) Enter the text in the small black box (example: rwgg)
6) Click “Submit Comments”.
It is Wednesday evening and now I am home, it has been long day, so either this will be a short note, or it will make no sense and have lots of typos in it.
I did chemo today, I had a reaction to the Carbo, I have known that the more doses you have of Carbo, the more likely you are to have a reaction, so especially over the 12th dose, well this was dose 14 for me—I think, extra Decadron is also on board now, so I almost can say I do not take responsibility for anything I say for a couple days, I am glad my bills are pretty much paid, I hate it when I have to think due to a crunch of some sort. But I have not gotten the disability check yet for last week, so that is weird. It will make it crunch time after a while. (Jumping subjects is all part of numb brain syndrome you know) Anyways back to the Carbo, about 12 minutes into the infusion, I walked back from the bathroom, my back started hurting, it was like my sacral area was getting crushed together from the top & bottom, and my hip bones were getting crushed together from the sides, it was really weird, and I had a major hot hot hot hot flash, got all flushed and was coughing almost uncontrollably, the nurse (it was one who generally works in the clinic, she is sharp as a tack, and I enjoy talking with her, was on the other side of the room doing something for someone else, she looked up and asked if I was ok, it told her I was trying to figure out if I was or not, she said that was such a different answer for me, she came and shut off the Carbo. With in a few minutes I was feeling better, my blood pressure was 150/90----way high for me, I am the 90/60 gal here lately, and I had a bright red clumpy rash all over my arms, none on my chest, and my face was really flushed. I felt crummy. So shortly as we waited I began to feel better, the oncologist came in to look at me, he agreed it was a reaction to the Carbo, so to not give the Carbo, to give me another 25mg of Benadryl, so that means I had 75mg of Benadryl, I slept from 2-4 this afternoon, and can barely keep my eyes open now, so I am heading up in a minute or so. Sure am glad I took a bath this am, I don’t think I have the energy now. And I am also going to take Decadron (wonder drug, and I asked for it, I must be nuts) for a couple days. It should help with the reaction, and make me look like I was just in FL—it is almost Spring Training time, and I want to go, but not this year, to much going on.
I spoke with him about the response I had to the last treatment, I told him how I felt inside, that it was different than the battlefield I had felt in the past, and kind of like a major attack on the new wounds/incisions. He just smiled and said something about how everyone feels differently. I spoke with the nurse about it later, she said it is amazing what they hear from different people. He did not have an answer for me, other than he believed me and he does think this last response was a fluke, or I had something else going on, he did not feel a lot of the symptoms were related to chemo. So I will just have to see how I feel and let him know. I sure hope it was a fluke and I feel better over this next week.
Emily’s appointment went pretty well on Tuesday. She is to be in the brace for another 5-6 weeks, so she is madder than a wet bee about that, but will do as she has too. I was mistaken, and I talked with my primary dr. about this one, I was not sure. The x-rays will not show healing like I thought, the broken vertebrae will always show as compressed. They are looking to see if any of the bone fragments have moved and are heading towards the spinal column and could do some damage that way. So I was thinking, if it is not showing healing, why are we doing an x-ray, and not doing an MRI or something that will show something meaningful. My dr is the one that explained the bone fragments to me. I did request a copy of the x-rays, I want my PCP to have them and be able to show me piece by piece what is broken. Sure takes a toll on the attitude when you get kicked when you are already down. It breaks my heart for her, but we got to do what we got to do. Now the clinker is that they can not get her in until the end of March, that is like 8-9 weeks away, I need to call and talk to someone else to see what I can do, or get to the patient advocate person at the hospital, that goes under the asinine list. The gal told me they don’t have any neuro drs most of the month of February, that has to be a crock—or as my dad would say “that’s no way to run a railroad” That is one of those sayings I think you had to grow up with to get the true meaning of.
Ok enough, time to close these eyes for a bit. Take care. Sorry I got on a roll, I hope it makes sense.