Went to Rad this morn – saw Dr Ngo – trying to stretch out decadron since I think I get overwhelmed sooner before my second dose! Will have to change my pill organizer! My friend Charro got off work early today and came by – we went to lunch just around the corner – had Chinese food! Was a great visit even if it was short, quiet and sweet! Missed the good old times but -l guess we must all move on! She came over after and pumped since she’s still nursing and I just relaxed in bed! I’m so glad to have spent some time with her! I wish I could do it more but I can see getting overwhelmed if I do it too much! Planning for the next few days! Hopefully will go smooth! Sean’s mom coming home – go to Rad then to Tustin for holiday potluck lunch with my mom -Rae them driving down! Girls will be in daycare tomorrow so should be nice and quiet until everyone is home! Will be busy tomorrow but good busy hopefully!
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Sorry I have to keep updating this blog – I think it keeps me somewhat sane and keeps me proactive with the day to day stuff even though it’s not different day to day but I feel like I have to cherish each day forth and keep my brain functioning since one day it may not anymore -let’s hope not! Getting ready for another radiation -3 more to go! My friend Charro is coming by for a lunch visit today -looking forward to it! Still a little overwhelmed right now but just took my meds so hopefully will calm down soon!
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With all of Satomi’s hearing, sight, and mobility problems, the majority of her daily mental stimulation comes in the form of a pink blackberry. She’s on that sucker at all hours.
For all of you that have already been in contact with her-Thank you. It is keeping her grounded and positive and sane. Please keep it up. If anybody else wants to send her a message or have a chat, send her a note to satomi.okamoto@yahoo.com.
Please keep it positive and feel free to talk about normal day-to-day-life things. For anything more serious, send me a note at sean.okamoto@yahoo.com.
If you are like me, reading Satomi’s “Home and ready for bed!” post is going to scare the crap out of you.
“I’m depressed but not suicidal!”
Honest albeit a bit blunt. The way things have been going, it doesn’t surprise me one bit.
Our Oncologist visit today went a bit different than usual. I dressed Satomi in her gown and she lied on the table with a sweat shirt over her head. The lighting was bright so the idea was that the darkness would reduce her dizziness. Not sure if it worked but she was pretty well isolated.
The doctor entered and we talked about Satomi’s condition. I usually would have had Satomi join us (i.e. take the sweat shirt off her head) but she wouldn’t have heard me anyway so I let her be.
All the typical questions were asked, “How is she eating?” “Sleeping?” “Nausea?” There were a few questions that were a bit more difficult so I refered to a pad of paper that Satomi had been taking notes on during the drive over. It took a minute to read the scratchy ink blot.
The last line of Satomi’s note asked about hospice care.
What? Where the hell did that come from? Isn’t that where people go to die? It’s very upsetting to use the “D” word in any context.
It was so honest and plainly spoken I almost lost my composure. The idea that Satomi knows what’s coming and still has the strength to speak of it so casually is just beyond me.
Discussing the hospice option does make practical sense but we had not talked of it before. I guess I shouldn’t be bothered about it. I mean, can you imagine discussing something as serious and upsetting as hospice care over a text message? Inconceivable…but that is our life now.
Our Oncologist ordered “Palliative” care in lieu of hospice care. Satomi’s cancer had not spread so the doctor felt that there was no pressing need for hospice care.
OK but what the hell is “Palliative” care? Honestly my cynical brain thought it was a chicken shit way of saying “hospice” care without saying “hospice” care. I ended up looking it up on Wikipedia.
Here’s a link: http://en.wikipedia.org/wiki/Palliative_care#Comparison_to_hospice_in_the_United_States
In a nutshell, “palliative” care is similar to hospice care in that it is focused on improving quality of life, pain management, and symptom relief. It is used for chronic illnesses. Hospice care, on the other hand, is intended to provide similar care in an end-of-life situation. A key distinction I think.
Ultimately, it is all about quality of life and I think everyone can agree that’s what Satomi needs right now.
Went to see Dr. Tetef – seemed smooth – I had all my comments, questions written out for her -still same plan – finish whole brain radiation, get port-a-cath placed get IV Herceptin – same plan as before – won’t see any results from radiation for at least a month or two – asked about hospice care – she will order some palliative care for me for comfort – no need for anti-depressants yet – you all are my anti-depressants! I don’t want to take any more pills than I have to – of course I’m depressed but not suicidal! Have to enjoy my family/kids!! I will hopefully try to do some home health PT so I can stay strong – anybody know a good oncology home health PT? I would think with St. Joseph’s Cancer Center just a few miles away, there must be a great oncology PT!! I have to use some of my contacts! Thanks for any recommendations! So, for the time being, we r status quo – just need to rest and hope this tumor shrinks and my symptoms get better! I just want to feel normal again!
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Satomi's Cancer Blog 