Hi everyone – this is Satomi! Sean finally put the wordpress app on my blackberry so now I can post my “ramblings” to keep you all updated on how I’m doing. First, I want to just thank you for all the love and support you have given me this past year (plus some – I can’t believe this whole thing started more than a year ago!) – all the meals and words of encouragement really fueled me to get better and I am doing pretty well – still dizzy as ever and have quite a bit of back pain that limits my mobility but overall I’m functional – I’m getting back to doing dishes, laundry, making dinner, spending time with the kids, etc. – all with some limitations requiring rest but all I have is time so with some planning, I can pretty much get most things done – I still can’t drive since I’m dizzy so I rely on my mom mostly to take me to my physical and vision therapies – I still rely on my four-wheeled walker when going outdoors since the last thing I need is to fall and break a hip – I’ve been getting out more and more – spending Fourth of July weekend with my family but I’m glad it was a three day weekend – glad I had the third day to just rest! Anyway, I hope you are doing well yourselves – I would love to hear from you – going through this has really taught me how precious life is and how much my family and friends mean to me so if you have some time, e-mail or give me a ring – maybe we can even get together! I would really love that! Take care and please keep in touch!
Posted with WordPress for BlackBerry.
It is my pleasure to introduct a new contributor to our blog-our beloved Satomi! It’s been a long time coming and I’m unexpectedly excited about it. I’ve activated her account and am downloading the app into her Blackberry now. Keep an eye out!
As I’ve mentioned in recent posts, things are changing around here. Our lives are becoming as “normal” as possible. We are starting to have a daily routine. It’s far from perfect but it seems to work.
Satomi is still dizzy as hell but she’s well enough to be self-sufficient. Her day-to-day health is stable except for the intermittent ER visits and quarterly brain MRI’s. On the most part, I don’t worry about her as much as I did before.
This has allowed me the time to focus on business and there is a lot of work to do.
That said, my updating this blog will likely be a bit more infrequent-maybe once or twice a month. Of course I will update immediately if something important happens.
I would recommend you all sign up for E-mail notification or an RSS feed of updates. It’ll probably be most convenient. I use them to monitor many things on the net.
Sorry for the change everyone. I’ll keep you all updated.
After a confusing couple of weeks, Satomi’s vision was finally retested by our Neuro-Optometrist. In some cases the improvement is distinct but in others, things look a bit worse.
Firstly, that funny pear sketch.
As you can see from the date, the top scribble is from back in May. It shows a distinct divergence in her vision. The lower scribble is from today and is definitely improved. Remember that the ideal sketch will just show two pears next to each other. In my last Vision Therapy post, I mentioned that Satomi performed this test flawlessly in “practice” sessions. That may be completely true because the “practice” equipment is not the “test” equipment. A small deviation in setup could result in this variation. What is important is that there is marked improvement.
These next graphs are her peripheral vision results. Again, here are the results from May.
And here are her July results.
Her right eye has noticable improvement in all colors but her left eye is a bit worse by the same margin. We’re not sure what to make of this.
Here are some tests I hadn’t included before: Blind spot tests. The doctor pointed them out specifically because of the obvious change.
First, her May results.
I’m told that these results are very good especially by someone with Satomi’s history. Here are her July results.
These results were surprising and basically unexplanable.
Finally, here is another new test: Binocular Spacial Perception. I included it here because it is a clear example of Satomi’s left-right issues.
In this test Satomi has a pencil in each hand. She is to concurrently draw lines from each set of numbers (5 to 5, 4 to 4, etc.) to a “perceived” central point on the paper. A set of lenses distorts her vision so that the “perceived” central point is actually two points, an inch apart.
What is important is the shape of the point. As you can see on the right, Satomi ends at a sharp point, indicating that her perception of the fixed point is quite clear. On the left, the lines end in a rounded blunt point, indicating that she needs to self-correct as the pencil nears the point. Her perception of the fixed point is skewed.
As I mentioned before, the results were mixed-some improvement and some worsening. We are assured that it is not uncommon that some aspects of vision may worsen before improvement. Satomi accepts it as a normal medical occurence but it just doesn’t give me the warm-and-fuzzys.
Based on these results, the doctor will be changing Satomi’s therapy plan. These results show that her monocular eye performance is a problem. Our focus (excuse the pun) will now be on each eye individually before continuing treatment of her binocular conditions.
We’re going to continue therapy and retest again in a 2 to 3 months.
Satomi’s had a 102F fever and chills for the last couple of nights. The chills stopped this morning so we thought the fever passed. A couple of hours ago I checked and it was 103F.
We called some of our doctors for input but its basically unexplained. So here we are-sitting in the St Joseph’s ER again.
We just got through Triage and we’re describing her symptoms and history. This is always a tricky time: Do we give the super long history or the short just-what-they-ask history? And by the way…her temperature is normal now! Crazy!
They took about a gallon of blood and an Xray. There was even talk of admitting her for observation.
Her fever is still down which is good but test results won’t be back for at least an hour. I had to cancel my afternoon meeting. Hopefully I won’t need to cancel my dinner meeting too.
The test results are back and everything is negative. We won’t get the cultures back for a few days but we’re going to treat it like a viral infection. Tylenol for fever and wait and see.
We should be discharged soon.
Update: July 5th
The ER doctor called and asked about Satomi’s fever. It’s normal now so there is no concern. Apparently there was indication that Satomi had some sort of bacteria in her urine but he didn’t mention what it was. We’re going to follow up with our other doctors but we’re happy to say that for the most part, this issue is closed.
Satomi's Cancer Blog 