Satomi's Cancer Blog

So it’s my birthday today but I don’t feel like celebrating.  I checked on Satomi about ten-thousand times throughout the night so I slept terribly.

Satomi, on the other hand, seems to be doing fine.  No sign of seizure or headache.  I let her sleep an extra hour this morning before waking her just after 9:00am.  She was going to have visitors at 10am and I wanted to get her all cleaned up beforehand.

Morning meds, new patches, new diaper, new sleep shirt, some lotion on her dry skin, a warm facecloth, a few sips of water and some apple sauce.  It was a busy morning but everything fell into place.  The activity also woke her up.  She was relatively alert for the visit.

Her friend stayed a couple of hours and Satomi was obviously happy to see her.  She mumbled as she spoke but the tone was happy and she smiled a few times.  It was good to see.

Near the end of the visit, Satomi had difficulty staying awake.  She quickly slept upon her friends departure.

It was a nice morning.

Things went from decent to bad in the matter of a few hours.

She had three seizures tonight in as many hours.  They were long-6 minutes, 9 minutes, and 5 minutes-and serious as ever.

I was alone with her in the room for the first one.  I barely even noticed it.  If I hadn’t heard her panting, I would’ve missed it.  I saw no obvious reason for it but seizures aren”t unusual so I wasn’t worried.  She was having some neck pain all day and it seemed to worsen after the seizure.  It was muscular so I put it on ice.

The second seizure happened with her visitors here.  It started off serious.  It dragged on for the entire time because there were signs that she was improving and then no change for a couple of minutes.  I considered giving her an emergency dose of Valium but her improving condition made me wait.  I straightened her head position and replaced the ice pack.  Again, there was no obvious reason for the seizure so I was a bit rattled.

The third seizure occurred just after her visitor left us.  I had just given her the bedtime medication and just tucked her in for the night.  I was tidying the room before closing the light.  She was lying in an ideal sleeping position.  I left the room to take a handful of laundry to the washing machine.  When I returned 30 seconds later, she was contorting and had a frightening wide-eyed look.  At that point, I was definitely upset.  There was still no obvious reason for it.  It started strong and tapered off slowly just like the second seizure.  It was obviously smaller so I didn’t consider the Valium.

What the hell is going on?  The most obvious thing is that her tumor is growing and putting more pressure on the brain stem.  I was warned that seizures may become more commonplace.  During her seizure her face twitched uncontrollably so it could be a sign that the tumor is now interferring with the 7th cranial nerve.  I cannot ignore this distinct possibility. 

It could also be aggravated by secondary factors.  All day her temperature fluctuated between 98.4F to a high of 99.9F.  When it was obviously high I removed her blankets, put a wet towel on her head, turned on the room fan, and opened the window.  It definitely helped reduce her temperature but I don’t know if this small swing could have aggravated her seizures.  I’ll talk to the RN about it tomorrow. 

In all these months I’ve been dealing with her seizures, I’ve never known of an attack during sleep so I got her comfortable and she slept quite quickly.  Afterward I sat on the chair next to her and did a bit of digging.  From what information I could find, seizures during sleep only occur in epilepsy patients.  I took some comfort in that and now I’m calming down.

I remain worried about the near future.

She’s groggy this morning.  Her mouth is very dry so I start with some water first thing.  I look at her catheter bag and decide to do some math-200ml of brown pee in 24 hours is 6.7 ounces of water.  That’s only a bit more than half the liquid contained in a Tall Starbucks coffee (12 ounces).  It closely matches the amount she drinks so I believe it.

Another two ounces of juice, a few spoonfuls of yogurt and apple sauce and that’s it for breakfast.  Her morning meds go well and I include a suppository laxative.  It been a few days and I need to manage the monster.  Let’s see how it goes.

The bandage on her bedsore has come unstuck and is missing.  I’m not sure how it can be missing completely but I’m sure I’ll find it later.  I put a piece of Duoderm over the sore and it seems to stick like mad.  Duoderm looks like the thick skin you have on your feet but is sterile and works as a bandage.  I love this stuff.

I also saw a red spot on her right elbow.  Remember that she had a blister on her left elbow from leaning on the bed rail.  I don’t know why there is one on her right side since there is a big pillow to isolate her.  In any case, more Duoderm!

An hour passes and I give her a few more sips of water; there’s no gagging or barfing.  She starts up with the waving to herself thing again.  She also starts to mumble about random things.  I can’t understand most of it but there was some mention of helping her up to change her clothes.  I think.

All these are signs of agitation so I administer 0.25ml of Ativan.  I wait 20-minutes and no change.  I give her a second 0.25ml and she’s sleeping a few minutes later.

It’s now 1:00pm and I’m sitting here next to her.  I hear her stomach bubbling.  I think the monster is gathering its strength for later.

In August of 2010 I formed a new company-Airis Envirosystems LLC-and I’ve jumped in with both feet.  Let me explain.

In the mid 90’s I got a random entry-level job at a small engineering firm.  The firm design and built equipment for power generation and petrochemical industries.  We had a shop in the back and I got lots of hand-on experience to augment my own personal interests.  The equipment was a small part of a larger air pollution control system which utilized a catalyst to reduce NOx (causes smog and other bad stuff).  In the late 90’s, I moved up the chain of suppliers and got a job at Mitsubishi which designed the catalyst component and was a system integrator (i.e. put all the individual pieces of equipment together).  My equipment experience was very useful and I also learned how to work with the catalyst and all the other equipment.  I worked there for over a decade.

In 2006, I figured out that the corporate world wasn’t for me and I ventured out on my own.  I provided technical services that ranged the gamut of my experiences-managing projects, designing systems, troubleshooting-all of the stuff I had done before.  But I did not build anything and that was my strongest attribute.  As you can imagine, building equipment is a huge step compared to “consulting” and I just couldn’t justify doing it.  A large part of it was that I was just chicken-Cluck, cluck.

Dealing with Satomi’s cancer has had a profound effect on my attitude.  First and foremost, I’m not chicken anymore.  I don’t have anything to lose and I have everything to gain.

I finally got off my butt and begun all the steps necessary to become a full-fledged equipment supplier, including getting a partner.  All our insurance and licensing is in place and we sub-leased an office in Irvine.

Troubleshooting is an ideal way to compose new solutions.  Last year I filed a Provisional Patent application for one of my ideas.  We’ve spent the past eight months nurturing the idea and speaking with potential Clients.  I am happy to say that there is interest, market demand is growing, and we are designing a prototype.

With Satomi’s condition worsening, I cannot devote the time necessary and development has slowed but my partner has been very supportive and is continuing the effort. 

Although we have no revenue generating work in-house yet, our progress is still forward.  We are optimisitic that the next few months will be pivotal to our future success.

The tunnel has been long but I think I can see a glimmer off in the distance.

So sorry everyone.  I was distracted all day with work things.  Yes, I used the “W” word.  Don’t get excited though, it’s not like I get a paycheck or anything.  Just some forward movement.  I’ll post about it separately.

Satomi had a decent day although I had some real reminders about how things are. 

The hospice RN visited like normal.  The RN was happy that Satomi was semi-lucid and smiling but cautioned me.  Key neurological indicators still show progression (slurred and muffled speech, difficulty reading and understanding short messages, arm tremors, etc.) so we need to enjoy this time with her.

The aid came a bit later in the day.  We worked together and Satomi got through it but there were a couple of issues.  Satomi has her first bedsore on her right shoulder-blade.  Its dime-sized and looks like an open blister or skinned-knee without the scab.  The bed liner had a little ripple in it from Satomi moving around; We could see the impression in her skin.  The high point created more pressure on that spot.  I didn’t realize how sensitive a body could be to these things.  Now we have to take extra caution with her clothes and linens.  It looks painful but luckily we got no indication that she even felt it.

Treating the bedsore was typical first aid and was not difficult however, the extra time on her side triggered a small seizure.  We rolled her back immediately and she regained consciousness in a few seconds.  Unfortunately, we didn’t finish bandaging the bedsore.  We cleaned and prepped it but there was no bandage.  It would have to wait until later.  Her shirt was clean so we weren’t overly concerned.

Her breakfast went smoothly but lunch triggered a barf-fest.  I don’t usually give her a real lunch.  History has shown that we have to be careful not to overload her fragile body.  The multiple small meals is the only way she can eat now.  Maybe just a few bites here and there and a bit of water.  I try to increase it at dinner time but it’s a function of stomach noises.

I am usually prepared for barf .  I have two hospital trays strategically placed next to Satomi’s bed.  If there are barf noises, I grab one and jam it under her chin.  There is no doubt that it is as lightning fast as I can muster but I take extra care no to make it “violent”; I don’t want to upset Satomi.  There is usually a towel still there from the meal to catch the drips.  With the tray, I can eyeball the volume and know if she kept anything down.

This time I wasn’t in the room so there was no bucket.  When I got there I just saw spewed purple juice stains everywhere.  I considered calling this post “barf monster” but it still smelled like juice so it was far more pleasant than my other conflicts with bodily fluids.  And I didn’t want to diminish the nastiness of the Poo Monster.

The cleanup and linen changes went smoothly but it was still painful for her.  I had to roll her back and forth several times.  In between, I put a bandage over her bedsore.  Her linens were changed only a few hours before so this was the second time today that she suffered this pain.

As the evening progressed, she sat in bed mostly awake; It surprised me.  Instead of sleeping, she stared at her twitching left hand.  It looked like she was waving at herself.  She wasn’t in pain so I didn’t do much to stop it.  It was just a bit freaky to see.

Her bedtime meds went fine.  She was quite alert so I did still include a half-tablet of Ambien.  I gave her more juice, a few bites of apple sauce, and more water.  It seemed to give her time to calm down and let the Ambien work.  I could see her getting tired so I stopped feed her and she went off to beddy-by land.