I looked at Satomi in the baby monitor screen intermittently all night. It felt like a hundred times. She didn’t move at all. I awoke with a headache.
I walked in to check on her. She was on her left-side in the middle of a half-dozen pillows and three fluffy blankets. Her face was partially embedded by a pillow so she was making a crazy huffing snoring noise. I fixed the pillow and adjusted her position a bit. I administered her morning suppository and through it all, she never stopped snoring.
Her morning oral medication didn’t go well. I rolled her over and wiped her face. It got her to open her eyes but she couldn’t speak. I repeatedly asked if she was doing OK and if she could take her meds. I eventually asked if she knew her name. There was no response for many minutes. I showed her the liquid anti-seizure meds and she nodded so we gave it a try. She drank half of the cup and dribbled the rest on her shirt. It was heartbreaking to watch. I cleaned her up and didn’t even bother even asking about her morning pills.
I rolled her back over and covered her up. She started snoring again in less than a minute.
I left the room and told her Mom to forgoe her normal breakfast. When she awoke, a clear broth with some tofu is all that she can eat.
3:00pm UPDATE: She is very groggy but is awake. She awoke only a few minutes ago so hadn’t eaten anything today. We gave her pieces of apple and pear. She visited with us for 30-minutes before returning to sleep. There are no signs of her agitation. It’s obvious that she’s near her maximum pain medication dose so her bedtime medication will be tricky. I’m going to leave her Ativan alone but cut her Oxy by half.
7:45pm UPDATE: I just spent a few minutes with Satomi and she was good. Her back was still uncomfortable but she was in no pain. She ate several apple slices and drank some juice. She was fairly alert and could communicate. I was very happy about it. Even after a day of sleeping, she’s very tired and asked to go back to bed until I give her bedtime meds.
10:15 UPDATE: She’s been sleeping for almost an hour. So far so good.
In the past almost nine years of marriage, Satomi and I have argued about a hundred thousand times. A few years ago, in the midst of one of these arguments, I paused the hostilities to make a fundamental observation about Satomi’s personality. To illustrate my point, I described a vivid dream that I had a few days before.
Satomi and I are crossing a busy street. She’s ahead of me as we reach the middle of the street. I see a car run the red light and speed toward her.
I reach for her and scream, “Satomi watch out!”
Instead of leaping out-of-the-way, she stops walking, turns around and says, “Why?”
BAM!
Satomi thinks I was full of crap back then and still thinks so now. I, on the other hand, think it’s symbolism quite accurately describes our personalities and most importantly, her deep-rooted trust issues.
The busy street represents our life together. The car running the red light is an unforseen emergency. My scream is literally my warning to her. Her question is her lack of trust.
Let me put it a different way:
Even in times of great peril, Satomi would rather take the time to understand for herself rather than trust that I have her interests at heart.
At the time, I’m sure that my dream did more to piss her off than illustrate my point. But now this abstraction is a reality.
Satomi and I argue almost daily about her using the bedside commode instead of the catheter bag. You may remember that she’s had several seizures there and she is typically too weak to get back into bed.
She keeps pushing me to explain why I’m against moving her in all but the most dire of circumstances. For some reason the obvious response of “you have a catheter” is not enough to squash the idea of using the bedside commode for pee duty.
Recently she just waits for me to leave the room and pesters whoever is sitting there to help move her.
Why does she always need to know? Can’t she just trust that I’m trying to keep her from having a seizure? That I’m trying to keep her alive?
I know that she has functional brain and memory disabilities and this argument is minor and stupid but after all this time together, it is just disappointing to see that these trust issues still apply to me.
“Satomi watch out!”
I signed the papers and just FedEx’d them back to Rose Hills.
Two adjacent glass-front niche’s for the discounted price of $10,400 plus a $280 maintenance fee. That’s damn expensive for what amounts to be about two square feet of space.
This is less than the $13,600 plus fee that I was originally quoted. The extra ~20% discount applies to all “pre-need” sales with at least a 25% down payment. To qualify as “pre-need”, a space needs to be paid for before passing of the named owner. Given the situation, the only way I could be sure to take advantage of the discount was to pay for Satomi’s outright.
My space, however, could be financed. There were many “low-interest” options available but I opted for a “no-interest” two-year deal. It felt like I was buying a new refrigerator or big screen television.
While I’m glad I’ve set up much of her arrangements, I’m still bothered by the whole experience. I may have handled it like a business tranaction but I have real issues with my mortality and the concept of “eternity”. Being somewhere “forever” sounds like a huge commitment and I am nowhere near being able to know what I want. To be honest, I don’t even know if I like Rose Hills.
For now though, at least I know Satomi will be well taken care of and I have an option.
I was just so reluctant. Call it weakness or blindness or delusion but I just didn’t want to believe that her pain was worsening.
This morning she was being watched by two of her friends. This is usually a recipe for a happy visit. But on the contrary, Satomi was very agitated-tossing, turning, barking-and in obvious discomfort. Instead of visiting, Satomi’s friends had to comfort her and administer doses of Oxy and Ativan.
In retrospect there have been signs of more pain for the last few days-Increased back and neck pain, worsening mood and frustration. Last night I noticed that our normal bedtime dose of medication took much longer to have an effect.
As of lunchtime today, Satomi is now on 100mcg/hr of Fentanyl or the equivalent of almost 400mg of morphine per day. I am hopeful that this will be enough to comfort her but I was warned that a 25mcg/hr increase may not be adequate to subside her primary pain. Apparently at this dose level, larger increases are necessary for a similar effect.
We’ll see how it goes tonight.
6:00pm UPDATE: Satomi is still combative and has some back pain. She is a bit confused and slow but seems calmer overall. It’ll be another ten to twelve hours until the patch reaches full potency. The morning will be very telling. I really hope she’s not over-medicated.
10:15pm UPDATE: Satomi was restless but is sleeping now. Hopefully she’s down for the night.
I’ve been trying to have a “happier face” when I deal with Satomi. It seems to reduce her anxiety if she thinks I am not frustrated or angry. So I either have a blank look or act my ass off and fake “happy”. She commented to me tonight that she hadn’t gotten mad at me for the last few days. My “happy face” plan seems to be working. So now I have one less means of stress relief. No more lunatic mime rants. This sucks.
Tonight was a typical weekend evening. I am caring for Satomi alone and we get into a discussion about dosing and schedules and laxatives and her poo and dinner time and whatever else popped into her head. I gave her a laxative and timed her other meds to maximize absorption. She questioned my methods.
After a short period, the laxative worked and I quickly moved her to the potty as not to release the Poo Monster. As she sat on her throne, she continued the questions. I was getting frustrated as logic and rational thought were not a big player in tonight’s discussion. I reminded her to hurry as extended periods on the toilet could result in a seizure.
Ten minutes later, my warning came true. A major seizure on the potty. I had already cleaned her up so I quickly and carefully picked her up by putting one arm around her torso and the other under her bent knees. She’s much lighter than I remember. I carry her from the potty and put her down on the bed. I straighten her up and calm her down. The seizure passes after a couple of minutes. The tremors were more severe but I’m sure it was because she was already in an uncomfortable position sitting up on the potty. The headache following seizure was enough to trigger a minor bought of vomiting. I had to race over and give her the bucket before things started spewing.
The potty was only two-feet from her bed position so the move required some twisting. It feels like I wrenched my back during the move. The pain is familiar as I’ve done it dozens of times before but not recently. Damn!
I cleaned up the smelly poo and smelly barf and I sat to rest at the foot of her bed. She started the discussion again and reminded me that I forgot to get her drink from downstairs. Satomi attributed my poor memory to my fatigue and graciously offered me her forgiveness. Forgiveness? I smiled wide and wrote a pleasant note politely disagreeing with her every statement. I was just fuming inside. The idea that she would forgive me for my poor memory was just too much.
Combine that with obvious back pain, the lingering smell of barf and poo, my dumb ass smile, and the recollection of all the other things that are screwed up in our lives and I just wanted to freak out. It came close tonight.
Now that she’s sleeping, I need to focus on getting my head straight and getting the pain out of my back.
Satomi's Cancer Blog 