Yesterday turned into a restful day instead of the busy day I had expected. Not one of the people who had said they would be coming by on Friday or otherwise Monday (pharmacist, chaplain, dermatologist, physiotherapist, and psychotherapist) showed up so lots of time to relax and rest, which is a good thing.
I did eventually get a spinal chemo infusion (spinal tap, lumbar puncture, etc. - they use all these terms interchangeably). Again it all became very complicated. Dr A (not his initial to protect his identity), who performed the procedure on me the first time, had expected someone would do it on Saturday. The weekend staff said there were not enough qualified people on duty so it wasn't done. When Dr A came in on Monday and found it hadn't been done yet he became very aggitated and said, "They're all passing the buck." I think Dr A himself didn't want to do it because I scared him so much by becoming frozen from the neck down last time. I insisted on talking about the dosage of freezing that would be used before anyone did anything. He started asking me what to do, and showing his agitation about doing it at all, so I got nervous and cried a few tears as I was sitting there while he was preparing the freezing. At this point I was not feeling very confident in Dr A.
Just to make a long complicated story shorter, he ended up cutting the amount of freezing way back from the last time, just scratched my skin, rubbed the freezing on the scratch and, against his own better judgment, inserted the needle into my spine to withdraw spinal fluid for testing and to insert the chemo medication.
He figured I would be in agony, but my whole lower back, bum, and upper legs were frozen just from the little scratch and the reduced freezing meds he rubbed onto it. I felt no pain at all. Just a little bit of pressure wherever he was working.
So now poor Dr A is totally spooked and told me he will no longer perform this procedure on me. He believes my mind has so much power over my body that I can make it feel like it is frozen when it really isn't. I told him that if I had that power I would wish for some amazing things if I knew I could make them happen that way. He felt I was emotional before the procedure so he wants the psych department to get involved to help figure out what's going on with these strange after effects of the spinal treatments and with my panic attacks.
I've been ready to go home all day. The only condition on my going home is that I have a consultation with someone from the psych department. All day I've been trying to find out when or whether anyone is actually scheduled to come. Both of my roommates had a random consultation from the psych department, but I didn't. Three people have advocated for me and insist that they have contacted the psych department and that someone is coming. The psych department says they have staff around the hospital doing consultations and someone will be around to see me sometime today. I've been keeping a paper trail on everything I've done and everyone I've talked to in my effort to find out when and whether someone is coming to see me so I can go home.
So now it's 4:05 pm and I'm still waiting... Sorry for sharing all of these boring details with you today, but I wanted to describe just one event, to give you a little feel of what I am dealing with here without sharing the intimate details of everything that's been going on.
Every little procedure and everything else seems to turn into a huge complicated event. I get so frustrated sometimes! A lot of times, actually. I don't understand it! What is going on? Sometimes their talk about the psych consultation makes me feel like the "crazy woman" on the floor and that they are not wanting to deal with my panic attacks and now these unusual responses to the freezing.
On the other hand I'm thankful that I got the second spinal injection already, for visits and phone calls from just the right people at just the right moments (God sent!), the good reminder to remember and claim God's promises at times like this, and the continuing prayers, love, and support with which we are supported and surrounded.
P.S. Just as I was about to save and publish this post the director of the psychiatric department showed up. We had a very pleasant meeting in the lounge, which resulted in the required report that would allow me to go home. I'm home now and off to bed. Goodnight!
3 comments:
Hey Ellie
You are home!
Just to let you know that you are not crazy - if you are then I am mad. I found the psyche people quite good I still see mine every month. I think that when you are a busy person like yourself have always been you get frustrated when things do not get done - being ready and prepared for something that you have built yourself up for, then does not happen,is just soooo disappointing.
I often thought to myself what is god trying to teach me all this - I could only come up with teaching me patience and perseverance. Just to let you know he is still working on that with me!
Enjoy home, the blue skies and being at peace with yourself.
Blessings
Lorraine S&D
Hi Ellie,
As I was reading your blog for today I thought Dr. A could probably use a psych consult more than you!
Wonderful to hear you are at home.
Peace & joy in the midst of chaos,
Carol
Actually, please pray for Dr. A.
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