Most of you don’t know that Satomi has a bicuspid heart valve; a “tricuspid” valve is much more common. Here is an article that describes it in some detail: http://en.wikipedia.org/wiki/Bicuspid_aortic_valve
It’s a somewhat minor heart defect that became apparent during her pregnancy with Kandice. As she got bigger, her heart had to work harder to move the extra blood and Satomi had some heart palpatations. It was a bit concerning so we went to see a Cardiologist.
That’s when we found out she had the bicuspid valve. Practically speaking, not to big a deal. But then again, a bicuspid valve is typically replaced in the patients 50’s or 60’s. What?! Open heart surgery? Great…something to look forward to.
That said, as part of all these treatments, she gets periodic Echo’s. Nothing unusual-the valve was working fine.
[Author’s Note 6/10/09]: This post used to be called “Call for Help”. I re-titled it because I got several supportive but a bit misguided text and E-mail messages. Although I’m paraphrasing here, it seems that everyone is deathly worried that our lives are fallng apart. Of course that is the ultimate concern but things aren’t that bad. It seems that these messages were based almost entirely on the title of this post. Things are tough and will get tougher but our lives are still moving in a positive direction. Like I said below, it’s all about attitude.
After speaking with Satomi (see “A Worrisome Sunday (Part 1)” below for context), her best friend decided to take action. She sent out an E-mail to organize their friends to cook and deliver meals to us and perform household chores such as the kids laundry. Many of you may have received an E-mail about it.
My first response was anger.
Nobody talked with me before sending out this “call for help”. Since it is my family and my household, I would think that it would warrant a quick chat beforehand. Is that too much to ask? Last I looked, I’m still primary caregiver.
The “call for help” questioned my abilities even before I had the chance to show my abilities. I feel helpless much of the time-Not being an Oncologist and all. But, I’ll be damned if I feel helpless in my own house with my own family.
My second response was gratitude.
The truth of the matter is that her best friend wants to make Satomi’s life less stressful-How can I argue with that? My damaged ego aside for a moment. Even if I satisfy all the needs of my family, Satomi will still see my stress and her worry will continue.
I told her friend that after my Parent’s leave, meals would be welcomed. Any other help would have to wait until I had a chance to identify problems and potential solutions. Trying to fix them without some careful thought is premature and just a waste of time.
While it is true that Satomi and I haven’t had to raise our own family for quite some time, it is my opinion that the upcoming departure of my Parent’s does not spell the end of all things. It will be very difficult but I’m sure we can get through it.
It’s all about attitude.
This past Sunday was a difficult one for Satomi. She was very fatigued from a long Saturday and her lack of recovery wore heavy on her psyche. It was very frustrating-She was sad and a bit depressed. I was quite happy when Satomi’s best friend called to check up on her. As I later found out, Satomi took the call as opportunity to vent her frustrations. Her friend remained positive and upbeat but Satomi had a lot to say.
Satomi is frustrated with her slow recovery-Dizziness, fatigue, and double-vision. It’s been months since the initial operation and just wants it to be over and done with.
Satomi is also very worried about the details of our everyday life. The kids are especially concerning.
As most of you know, my Parent’s have been living with us for the last few years. They came a few months after Jillian was born. It allowed Satomi to return to work quickly and time to care for her seriously ill Father. Their help gave us a fairly normal life through all the treatments and operations in 2008. With this most recent brain tumor, we didn’t have to worry about the welfare of Jillian and Kandice. They provided stability when (at least in my mind) there was none.
Now they need to leave. My younger sister is very pregnant with her first “children”-She is having twin girls and needs my Parent’s help. Her due date is (I think) sometime in July however, we all know that multiples have a tendency to come a bit early so plans are being made now. My Parents are delaying their departure as long as possible. It looks like the weekend of June 27th will be it.
Satomi is worried about this transition because she knows how much my Parent’s contribute-the girls laundry, breakfast, and lunch; taking them to school and sometimes picking them up too; cooking everyone’s dinner; doing the household grocery shopping; taking out the garbage; and cleaning the bathrooms. I’m sure there’s more but that’s all that come to mind at the moment.
My present plan is to do everything myself-I mean, nearly every other family in the world has to manage this stuff, right? Call me naive but I think I can hold things together-at least for a while. Satomi is worried about my delusion. I don’t think she doubts my abilities-At least I hope not.
[Authors Note: 6/9/09] This event was important to all of us and so I guess you can see why Satomi stood in line for an hour in the sun. This was the beginning of a long day and was the basis of her fatigue and emtional instability on the following Sunday. So was it worth it?
Our eldest daughter Kandice had her first dance recital this past Saturday. She had been taking an informal dance class at her pre-school every Wednesday afternoon-She loved it.
Call me dense but I didn’t realize that it would lead to a recital. With everything going on with Satomi, I didn’t pay much attention to it.
I’m so happy that we followed through with it.
And a photo of all the women in my life.
Pre-Recital
Here is a short sampling of a video I took of the dressed rehersal. Kandi’s second from the left.
If you look closely on the far right of the stage about 30 seconds into it, you can see the little girl’s shoe fly off-Frickin’ Hilarious!
I’m a lucky man and we’re so proud.
Satomi went to work today-Admirable-thinking yesterday was a battle-stations kind of day. She was very productive but pushed the Physical Therapy a bit too hard.
Apparently her PT team listens to their beloved Supervisor quite well. Satomi asked her PT to push endurance exercises today. It knocked her on her butt (Physical Rating 3). Ha-She asked for it! She’s in good spirits (Emotional Rating 4).
I, on the other hand, am not so happy (Emotional rating of 2). I didn’t sleep well at all and my performance at work was unfocused. The ER episode yesterday really bothered me. I thought about it and after a few hours of reflection think I know why. I am worried about the future.
When my Parent’s leave, emergency episodes like yesterday would be significantly more difficult-We would have had the kids to deal with. It is entirely possible that in a similar situation in the near future that Jillian and Kandice would have been in the ER with us. That would have been unbearable.
If it does occur again, our basic plan is to call Satomi’s Mom to come and get the kids at our house before going to the ER. The problem is that it takes a minimum of 25 minutes from her house to ours and in cases like we just had, every minute counts. Out of necessity, I would have had to take the girls to the ER with us and the nightmare scenario becomes reality.
I’m working on an alternative plan.
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