Hello all! Today I have decided to no longer contribute my thoughts/feelings to this blog since I am going in/out of reality and don’t want to confuse u all on what is the truth – I have been corresponding with some of u via e-mail and I think for the most part have been honest (unless Sean says otherwise) and hope Sean keeps u updated on my condition the next weeks/months but I feel like my reality is not so clear so if I say anything contradictory, Sean can negate it! I feel like I’m in a fog and like to continue my e-mails/texts but not sure if I’m telling the truth! A part of me just wants to go away so I don’t suffer and my family suffer but then I also want to fight! But I have no energy! My reality is not tangible and I just feel helpless! I don’t want to just not wake up one morning! I can’t hear, can’t see, am always dizzy with a headache, overwhelmed with fatigue! I move my head and the room spins! Hopefully, these symptoms go away! Please have a great New Year’s Eve!
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After a bit of digging and improvisation, I put Satomi in my old rock-wall safety harness. It was a bit big but is wrapped around her pelvis well and gave use some very good hand holds for supporting Satomi while she moved around. I also use the gait belt but only for stability.
Satomi hates the harness and keeps talking about some floor-mounted mechanized crane or whatever. I really don’t think she understands that this harness is only to allow us somewhere to grab when she falls. She forgets that she’s fallen or had a seizure EVERYDAY since it all went wrong back on Christmas day.
I’m sure it’s the Physical Therapist in her. She keeps correcting my grip on the gait belt.
Satomi had trouble from the very beginning. She didn’t remember if she needed to take her morning medication. It was very upsetting because she’s taken morning medication everyday of her life for the last several years. How could someone forget something as consistent as that? I’m a dope, someone with an irradiated brain can forget their own name under the right circumstances.
Her walk downstairs to the kitchen table was slow but thankfully uneventful. We discussed her condition and her wishes for her care. Surprisingly, she contradicted many things we had discussed only a couple of days before. It was a very convoluted conversation since I was writing on a dry-erase board and she was talking. Half the time, we were not talking about the same thing so I won’t even try to repeat it all.
The important thing was that she said she wanted to go to the hospital instead of being treated at home. She didn’t want our girls to see her degenerate. Earlier in the week we agreed to home care to allow the girls to spend time with her. I advised our palliative care RN to set up everything accordingly. I told Satomi that we weren’t changing anything. If the worse was to happen, I had a plan for the girls care so she shouldn’t worry about them. She asked about the plan. Instead of changing the subject, I stupidly answered her and she got upset. What was I thinking? Luckily her sister Kiyomi arrived and the subject quickly changed.
We arrived at Orange County Radiation Oncology a few minutes early. It was raining lightly and we didn’t want to rush. We took everything slowly. Satomi was bundled up and comfortable in her wheelchair. I had already given Satomi her first 5 mg dose of Decadron for the day so the effects of brain swelling should be minimized. Kiyomi joined us so we had an extra set of hands.
We took Satomi down to the lower level to the treatment room and rolled her through the hall, past the lead-lined door and up to the table. We moved very slowly. Satomi grabbed the edge of the table and stood up slowly. After a second of stability, her knees started to buckle and her core started to shake. I bear hugged her and lifted her up on the table.
We removed her gait belt, rain coat, zip-up sweatshirt, and head rag. We slowly lowered her from a sitting position onto the cold hard table and lifted her knees with a pillow. As soon as her head touched the positioning device, she had another seizure. This time her Mom and sister were in the room and saw it first hand. Her Mom had to leave. Like last time, I held her hand and head while her body contorted. Her pupils were huge black pools. This seizure seemed longer than on Monday.
The Radiation Oncologist joined us and I explained the circumstances and how Satomi was already on the previously prescribed anti-seizure medication and elevated Decadron dose. This should not have happened and was a bad sign. The doctor added a second anti-seizure medication. We discussed the complicated dosage plan. The doctor gave me specific instructions: If Satomi had another serious seizure while on both oral medications, the only other option was to take her to the hospital for an IV anti-seizure medication.
We took her positional mask with us to signify the end of her whole brain radiation treatment.
We immediately went to our Walgreens to fill the new prescription. In the waiting area I spoke to the palliative care RN and discussed the situation. I proposed delaying the Portocath procedure and she agreed wholeheartedly. There are many dangers for Satomi in her present condition. Satomi needs rest and recuperation. Everything else is a secondary consideration.
Sean just came in to try this strap for me to try so he can “handle” me to the bathroom/around the room so I don’t fall – the problem is I have so much weakness all over that no matter what “strap” use -mishandling it will be painful especially in my groin area! A typical gait belt will help with “walking” types of activities but will be hard for more “harness when getting on/off the toilet! SEan opted for his mounting climbing gear for the toilet but the straps could potentially get in the way -I know he has good intentions the engineer in him is thinking constantly about how to keep me safe but as long as I can help a little, I really don’t want to be confined to the strap! I think the next step will be mechanical lift with bedside commode, then bed pan – rather be safe than sorry! I just want to break another bone! Thanks for those who gave him ur input – he could really use the guidance! I still want some quality in my life!
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Satomi's Cancer Blog 