Only a few minutes after rushing home so Satomi could take more Decadron, we got a visit from a very pleasant lady with a very unpleasant job-Our Palliative Care Registered Nurse.
She was here to evaluate Satomi’s living conditions and her needs. We discussed the highlights of her medical history and her symptoms. She looked at our home and witnessed how we handle Satomi-getting her up the stairs, how she walks to the bathroom, etc. Satomi was doing pretty well so it went pretty smoothly.
I reminded her of Satomi’s recent problems and spoke in-depth of my concerns. Using this information and her observations, we made some plans for our near future: Grab bars, shower seats, portable potty units, bi-weekly nurse and physical therapy visits, house call lab draws and medication deliveries, and 24/7/365 Call-In Nurse support. All this help is to simplify Satomi’s life, make it less strenuous while maintaining her safety.
We also talked at length about Advanced Directives. These are better known as DNR or “Do Not Resuscitate” orders. We spoke about my own life philosophy but Satomi’s deafness made it impossible to discuss with her. I promised the nurse that I would speak with Satomi about it. The nurse made it clear that ultimately any continued resuscitation would be my decision. I have some serious thinking to do.
I spoke to Satomi about it briefly and as you can imagine, things got a bit emotional. My philosophy is based purely on her quality of life and minimizing her pain and suffering. Her position is more of an unorganized thought. We’re going to discuss it again later.
Found out that after I got on radiation table – I had a grandmal seizure so that’s probably why I’m super tired now! And probably not going to have another Rad till swelling in my brain subsides a little more but may just take meds and hopefully that will help healing! Suzanne, a palliative nurse came by to discuss my needs! She’s super nice! Discussed my goals! Sean’s worried about me – doesn’t think my Mom is able to help me, physically! She is 73 yearsold! She’s here mainly for moral support! May need more physical support but hopefully I can get help here and there! This week should be interesting – really holiday for most still! Hopefully will start HH PT to get stronger – know my core strength weaker!
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Satomi doesn’t remember any of this.
She had a seizure on the Radiation treatment table today. I had just helped her up onto the table and she had lied back onto the hard surface. A few seconds later, she went stiff and all her limbs contorted. Her face and eyes twitched uncontrollably.
I held her hand and head. I looked deep into her eyes and kept talking to her. Her gaze was blank so it was obvious that she was unconscious. She was completely unresponsive for nearly a minute.
The doctor arrived and told us it was typical for brain swelling. We were to increase her Decadron dose immediately and start an anti-seizure medication. We had to skip our last Radiation session until she stabilized.
Satomi started talking and her body loosened up. I rolled her out and returned home for extra medication. She seems OK now.
The doctor explained to me that instances of high and low blood pressure (as would occur after climbing up on a treatment table) with a swollen brain could trigger seizures. That could explain her blackout on Xmas day.
I’m very upset about this.
After I took my non-food meds, stayed in bed then changed to go down for take meds with food around 9:30 – ate shake and breakfast and took meds! Got into to car to drive to Rad – had to leave a little earlier – Sean wanted to stop by Childtime b4 rad to talk with them – went to rad and not sure if I actually had rad or not! Had to take more decadron when I got home for some reason! Still confused! Not sure if I just skipped today or gonna have another one later? After I got home, palliative RN Suzanne here to check me out! Had lunch too! Thought I was also going to see home health PT but not sure today – still dizzy, confused! Now resting – mom brought some satsuma tangerine to munch on! Sean out should be back soon!
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Good morning! Can’t believe it’s the last week of 2010! Just got up to go to the bathroom! Slept really good after taking melatonin! Still can’t hear and dizzy as ever but had strength to walk to bathroom without a lot of physical help! Still had to lean on walls and the bed but at least I was able to pick my feet up this morning! Took my no-food meds and gonna rest another hour b4 getting up for the day to take my w/ food meds -make my shake and hopefully have some breakfast B4 going to Rad! Hopefully today will be a good day! Have a great day yourself!
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Satomi's Cancer Blog 