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Keith's Brain Trust
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In Memory of Rob...

Music by Matsui Kazu "Sign of the Snow Crane"


Trying to get artistic...

The American Cancer Society Relay For Life represents the hope that those lost to cancer will never be forgotten, that those who face cancer will be supported, and that one day cancer will be eliminated.

Currently working on a little video (this could take DAYS) capsulizing my journey as a fund raiser over the past several years. Stay tuned. In the meantime, you could make me smile by clicking the link and visiting my Relay page. While you're there you could leave a donation or just go see how my teammates are doing.

Click to donate


Around the Track to Beat Cancer Back!

The American Cancer Society Relay For Life represents the hope that those lost to cancer will never be forgotten, that those who face cancer will be supported, and that one day cancer will be eliminated.

Click to donate

It is time once again for Keith's Brain Trust to prepare for the ACS Relay For Life of Hudson. As in the past, I sent out emails to ask for donations for this cause. Of course, in years past, I was doing this task in tandem with letters for those among my family and friends who do not have email access either by choice or necessity. And I would be starting months earlier. This year, however, I was unable to get the drive to do so.

And now, the Relay is less than a month away. And activities this past week have given me the kick in the butt I needed to get on the ball. But that wasn't enough time to send out letters via the post. So that's where any blog readers come in. Now I realize that I/we do not update this blog enough to have regular readers any more. So if you've simply stumbled in here via some search, bless you. And I hope you will be moved to donate to our Relay.

If you are a regular reader and somehow miraculously noticed that I updated and came to see what I'm writing, bless you too! And if you haven't already been smacked with a long email about this subject, or dropped me from Facebook because you are tired of hearing about it there, or unfollowed me on Twitter because you were tired of me tweeting about it there, perhaps you'd like to drop a donation here now.

I could say something like they do during the Public Radio pledge drives, that the sooner I reach my (current) goal of $500, the sooner you'll be able to stop hearing about it. But unfortunately I typically raise my goal to something higher the minute I reach one because I'm all about resetting a goal once I realize I haven't aimed high enough. And considering I've raised MUCH more than $500 for the team in past years (when the economy wasn't doing so poorly, I know), I know that I'm lowballing it again, but I started so late this year!

But I know that with your help on this idea of mine, together we can do it. And I know that I have to tell a LOT of people in order to accomplish my idea. Here's the thing. I've decided that this year, I'm going to walk the whole Relay. Me. I'm going to walk the entire (in our case) 15 hours of the Relay. The rule of Relay is that they want someone from your team on the track for the whole thing. And I know that someone else from our team will most likely be out there with me. For much or most of it. But I've always wanted to do the whole thing. Like Gordy Klatt did when he came up with the idea 25 years ago and created this whole Relay For Life idea. Only his Relay was 24 hours. And he ran. So surely I can do this.

But I figure the more people I tell, the better. And even BETTER, is the more donations I have toward this, the harder it will be for me to quit. But that isn't the real reason I want you to give.

The real reason is because ACS has great programs. Like Look Good, Feel Better. And their 24-hour 800 number. And Cancer.Org where you can get all sorts of information and support. And the Patient Navigator program. There are just so many things that the Relay money does.

And it's especially important to me and my team members this year. Because we lost one of our own. And quite frankly, we're getting tired of our friends and family having to suffer through this. We want to see the end. And I know that you do, too.

And I know that thanks to generous donations from people like you, it's going to happen.

Please donate. Please.

Click to donate


Looking for Health

Am going on a little rant here. If not on my blog, where can I do it? And I have to apologize in advance because I know that there are so many in this country who don’t have medical insurance and therefore, don’t even have the luxury to go to the doctor when they are sick, let alone having the opportunity for healthy check-ups. And that healthy visit what this is about. At the same time, as someone who pays pretty steep money for our insurance, we don’t take it for granted and we want to stay healthy, so we are working hard to eat right and take our meds the way they were prescribed and take our vitamins and minerals and research the things that people our age are doing to make themselves feel the best they can.

For the most part, I’m pretty healthy. And it’s been a while since I’ve been in for a checkup. I do have an issue that I needed to have checked out and it was beyond time to have my cholesterol checked out. I have a family history of heart disease and high cholesterol and high blood pressure. I also have Raynaud’s Phenonemon or syndrome, I can’t keep track of which.

Anyway, I know that doctors are busy and on a schedule. So I went there with a list. It’s been a while since I last had a checkup. Not a long while. A few years, though. And I had my list of things I wanted to talk with her about. There were some baseline tests I wanted to have done (ala the brilliant Dr. Oz) such as the normal always completed blood pressure (106/78 today) and cholesterol (for which I was fasting). I also wanted to have her check my Vitamin D levels, which according to everything I’ve read, is an easy blood test. She was very resistant to this one.

Vitamin D deficiency is widespread and seems to be related to so many health concerns: osteoporosis, depression, heart disease and stroke, cancer, diabetes, parathyroid problems, immune function — even weight loss.
(read more here)

I wanted to have my C-Reactive Protein checked. It was a little more understandable when she resisted this because she is a newer doctor to me and had not yet received any of my medical history. And since she didn’t spend any time reading through the history we went through on my previous visit or the information I filled out on arrival, she didn’t know that I would have a reason for checking this. After explaining again my family history of high cholesterol and heart disease, and the Raynaud’s, and my own history with high blood pressure and being on and off blood pressure medication and weight loss, she did agree to check this as well.

In other areas of the ‘checkup’ and when I look at the appointment in retrospect, I use the term loosely. Areas in which I score her low:

  • She asked about my migraines and the meds I’m on for them. Again, she didn’t go over my history prior to our discussion so she’s starting from zero. The sum total of our discussion was, “What do you do about them when you get them?” I basically told her that any attempt at medicating them after they start does nothing for me because meds have always stopped working eventually, so I’ve stopped trying. Therefore, I have stopped doing much of anything. She did not ask me how long I’ve been having them. (25 years this summer.) Because she rushed on to the next topic which was totally off topic from migraines and my attention was needed in this other area so I could focus on what I needed to tell her there, I did not get the opportunity to tell her that over the past two of those 25 years, my migraines have changed in their severity and symptoms.
  • She didn’t look in my nose during the ear/nose/throat section (and the ear/throat glance were SO passing that I don’t know how she could have diagnosed anything) and this made me completely forget to talk about what I consider to be a nagging but light sinus infection that has been affecting me off and on for the past couple of months. Because we happened to be talking about other aspects of the ‘checkup’ at the time. This was truly a multi-tasking event.
  • I mentioned some degree of tiredness and she didn’t ask if I was exercising or about my eating. I just thought these were no-brainers from a doctor at a checkup.
  • The one medical thing I went in for I mentioned up front. It was also the number one concern I put on my paperwork. When she filled out the labwork, she didn’t put down anything about a test for this. So she mentioned what she was sending me to the lab for and I asked about it. And she said, “Oh, did you want to be tested for that? Are you having symptoms of that today?” GAH!!! While waiting for the results for that test, she came into my exam room looking for a different patient. Added to all other problems of the day, it was just a little much. But I was grateful that she did, because…
  • In the course of everything that was happening, the discussions that were happening and the ones that were not, there is no place on the form filled out at the beginning of the appointment to tell them that while there, a prescription rewrite is needed as refills were finished the last time I tried to get one at the pharmacy and a visit would be required. So I nabbed her when she mistakenly popped into my room.
  • She did come in herself to give me the results to that test and said they were inconclusive (which tells me something else is causing my problem but she wasn’t going to take the time to discuss this or even think about that possibility with me) and said she would be sending out the sample for culturing. So at least there is that.

As a result, I’m giving strong consideration to doctor shopping again. I don’t think we should settle, do you? I think everyone should insist on medical care that includes a doctor who will take the time to listen to all of their concerns without interruption. I have a list for crying out loud. I’m not here to take up your whole day. I have this very concise list so that I can go very quickly through my concerns and tell you exactly what it is I want to cover and exactly what tests I’d like to see for my baseline numbers. I want to be healthy and I have a pretty good idea of what that constitutes.

Opinions? Am I expecting too much?



Just a quick post to say that HBB had his annual ride in the tube this morning.

Now we wait. We’ll see the Neuro-Oncologist this afternoon for the MRI results. We have a great room in a nice (warm!) hotel nearby to do the waiting and a Starbucks very close besides. Can’t much beat that with the wicked icy blast of winter that moved into the area yesterday afternoon.

Update - Better late than never???

Keith received a 'no change' result in his scan so we get another 12-18 months before our next trip to the U, unless something comes up that concerns him. Hurray! Thanks for thoughts and prayers!


Wow... It's December already...

And things are hopping around here. We’re making all of the usual preparations for the holidays and a couple of extra even.

Candle in every window

But even more important, There are the OTHER preparations that begin at this time of year. Captain HBB has finally made a decision and announced to me just the other night that the team should remain here in the old home town. And so I will register the Brain Trust Relay team with our local Relay For Life for 2009 which takes place in June. That means fund raising kick off is just around the corner, people!

And this is important to us for many reasons. The first of these, of course, is our deep gratitude that HBB will celebrate 8 years of life since his diagnosis in 2009. That’s big. But there are other things… Like the diagnoses that happened in the past months that I’ve already written about. And the battles that are being waged by bloggers and the friends and family of bloggers throughout teh internetz.

Only a couple of weeks ago one of our very first brain tumor warriors sent a message via email, newsletter and his facebook page that he was headed in to the hospital for surgery for a recurrence. This was a seriously huge shock to all who have followed his path these many years. As always, he has continued to be an inspiration to all with wit and words of hope, courage and grace.

A local teacher, Kim, a beautiful person inside and out, who has also had a recurrence of her cancer. Last month she received a Courage Award from ACS. I was so happy to read about this. I met Kim a couple of years ago at an ACS event. What a bright light. It was heartbreaking to hear that her cancer had returned. There have been stories in the newspapers and online news sites here about her and about how there is currently a campaign for people who know her to write an email to Ellen DeGeneres to tell her why she should contact Kim. You see, Kim’s current battle is a big one. When her breast cancer came back, it recurred in her liver and bones. And the chemo and radiation she is going through now is causing her much pain. But the one thing she can do daily is watch Ellen and get a laugh. So her teaching partner at school had this idea. I hope Ellen does contact her.

So we’re off again. Well, we’re nearly off. It’s that time again. It’s time to pull together a team. And take a deep breath. And see if we can’t pull together some donations once again.