These past few days we’ve had the blessing of in-house help of Satomi’s cousin, Akemi. She’s a practicing Ob-Gyn out of Chicago with three young babies. She graciously flew in on Thursday (1/20) to help us care for Satomi. I was very excited about the visit. If anyone could critique my methods, it would be a Doctor, right?
Akemi and Satomi had grown up together and were very close. When Satomi heard of the pending visit only a few days before, she was surprised and so happy.
Akemi’s bedside manner was definitely better than mine. I paid close attention but it’s hard to mimic the love that exist between close family especially when both are experienced medical professionals.
We are so thankful that Akemi could join us from so far away.
I saw something tonight that made me cry.
Satomi was trying to convince me to push her around the house in the wheelchair. I guess she was bored. I hadn’t planned for boredom so I had to think of something else.
I proposed that we put her on the wheelchair and roll her into the girls room. She could lie with them for the next 20 minutes until they fell asleep or she had any discomfort. It was a damn good idea and she agreed immediately.
We rolled her into the room and put her Jillian’s bed. The girls cuddled up and it was like old times. I left the room and watched on the baby monitor. This is a video I took of the screen using my blackberry.
It’s dark and grainy and almost unwatchable but it shows the love the girls and their mother share. It breaks my heart to know the pain that is coming to their little hearts.
Satomi enjoyed it immensely. I offered to do it everyday from now on. Satomi was so happy I started crying again.
I’ve spoken to several people recently about Satomi’s health and I thought it important to go over a few important details. Firstly Satomi’s health is very difficult to quantify in some objective manner. The best we can consistently do is call them “good days” or “bad days”.
We have tried to track headaches and seizure frequency and duration and intensity but the communication gap with Satomi makes this very difficult to track. It is not at all uncommon for Satomi to forget that she just had a headache so how can we track them?
What I do to track her condition is monitor her pain-killer type and dosage. Let’s assume that Morphine is our baseline (as I’m told that is normal practice in medicine).
I originally was told that Oxycodone was twice as potent as Morphine. With some professional guidance and some online research it seems that it is only half the potency. That makes a huge difference to the perception of her condition. In other words, two doses of oxycodone is roughly equal to one dose of morphine. Using a bit of math, each 1ml of Oxycodone is equal to 10mg of Morphine.
Fentanyl on the other hand is significantly more powerful that Morphine. According to an online Physicians resource, the 25mcg/hr patch that Satomi had used initially is equivalent to 60mg to 134mg of Morphine per day. The range seems to be a function of absorption, body composition, and time. For simplicity sake, let’s use its average equivalent or 97mg of morphine per day.
As I recall, over the course of the night of the first infamous headache back on January 8th, we gave Satomi 5ml of Morphine to finally stabilize her. Given the concentration of the liquid, that is 100mg of morphine. This does not consider all of the Tylenol #3 she also got.
After speaking with the RN, we gave her first 25mcg/hr Fentanyl patch the following evening and were to use Oxycodone if things went badly. For the week of January 10th, we supplemented the patch with Tylenol #3 as needed and tried to limit the Oxy. By the week of January 17th, we used the Oxycodone daily, as needed. The typical oxy dose for pain is 0.25ml/day which is equal to 2.5mg of Morphine per day.
For sleeplessness and agitation, she now gets an additional 1ml of Oxycodone at bedtime which is equal to 10mg of Morphine per day. As her pain and sleeplessness increased, we added a second Fentanyl patch on Tuesday.
After some work with an Excel spreadsheet, I learned a few things. Since the pain started 14-days ago back on January 8th, her pain killer dose has consistently grown to double the original dose to maintain her pain level and state of consciousness.
Given the potency of the Fentanyl, it is obvious that her total morphine dosage is mostly a function of the patches. It is also important to consider that the frequency of Satomi’s headaches have increased on Day 3 of patch usage. In recent days, the patch only seems to be effective to within 12-hours of the 72-hour (3-day) dosage window. In other words, we have to change the patch more frequently to maintain her pain levels.
It can be argued that this increase in dosage is necessary to compensate for the bodies increased tolerance to Morphine however, given the short time period, it seems most reasonable that it is a combination of tolerance and increased pain. All this said, there are lots of flaws in this exercise but overall, its basic message still holds true.
So back to the question on everyone’s mind: How is our Satomi?
All things considered, pretty damn good.
Over these past few days we have seen some changes to her seizure pattern.
Up until recently, her seizures have been minor, relatively short and somehow explainable: bad position, irregular movement, physical straining, whatever.
Now her seizures are fewer (i.e not everyday) and remain minor however, the duration has been getting longer. We have had a few seizures that lasted nearly 3 minutes. The most disturbing change is that they are not explainable: Sitting up on the wheelchair eating breakfast, lying on the bed in a previously “safe” position. It really doesn’t sit well with me for something to be completely random.
On Monday night before her sleepless night, she had one of those random seizures. I’m sorry I hadn’t blogged about it. At the time it didn’t seem important enough to mention. The Monday night seizure was very subtle. Satomi was in a normal sleeping position-on her right side, hugging a pillow-about an hour before bedtime. I was in my bedroom and watching her on the video baby monitor. Her Mom was in the room, helping position her and making her comfortable. Her Mom had just covered her with her big plush blanket when I noticed her hand twitching. I ran in the room and pulled back the blanket.
The toes on her right foot were curled up and her right hand was contorted and twitching. Her face was also twitching but only a little. I’ve actually seen her twitch more during normal sleep so it was still not clear if she was having a seizure or not. I tried to wake her up using the “sternal rub” technique (knuckles-in-the-chest-bone-just-below-the-collar) and she remained mostly unresponsive. I repositioned her into a “safe” position and tried to wake her. Surprisingly, it took nearly 3 minutes to revive her. I got scared. All of a sudden, she woke up. I was very surprised to see that she didn’t have a headache afterward but her speech was obviously slurred. She went back to sleep rather quickly.
On Thursday morning she had another seizure that was unusual. We had transferred her from the bed into the wheelchair so she could sit-up and eat breakfast. The transfer went well with no signs of unusual fatigue or seizure. She sat down and scooted back into the chair just fine. We covered her with a blanket and secured her catheter bag. The roll-up table was placed and her Mom started feeding her as normal. Since it was Thursday and the Street Sweeper Gestapo was about to hand out parking tickets, I had to move my car to the park across the street. On the 5-minute walk back, just as I rounded the corner, I got a phone call and I saw my garage door open. My Mom was relaying a message about something wrong upstairs. I ran down the street, up the stairs and found Satomi sitting in the same spot having a minor but obvious seizure. She was in the middle of chewing her food and she kept on chewing and chewing. I was concerned about choking and aspiration so I got her attention and had her spit out her food. It ended as all the others and there was no significant headache afterward. Meals had always been a comforting time so I was not happy that this happened. It’s just more evidence that vigilance can’t take a coffee break…or move your damn car.
It seems that she has some neurological damage and I assume it’s from these seizures. The RN said that these “seizures” may well be minor “strokes” but here is no way to know. Either could explain the limited movement she has in her right hand. She has mobility problems too but it may very well be due to the Decardon induced muscle atrophy. At this point, there’s no positive way of knowing how or why.
Do I dare say we have a routine? Well, maybe only for bedtime. The mix of Ambien, Ativan, and Oxycodone is working wonders for her sleep and ours. It’s a bit spooky though. She sleeps so soundly that she doesn’t change position at all. I try to check on her regularly just to make sure she’s still breathing like you would for a baby. Her positions are also very controrted. She doesn’t remember them so when she wakes with a stiff shoulder I have to explain it. I was concerned that I was overmedicating her (especially with the pain patches on her back) but she’s quite lucid in the morning with little after effects. I will not take it for granted under any circumstances so I really hope that this post doesn’t jinx it.
Satomi's Cancer Blog 