500 Miles 2 Nowhere

We've Moved!

noreply@blogger.com (KinnicChick) — Fri, 19 Jun 2009 16:09:00 +0000

Join us at our new Wordpress home!

Keith's Brain Trust
(click here!)

In Memory of Rob...

noreply@blogger.com (KinnicChick) — Sat, 06 Jun 2009 01:21:00 +0000

Music by Matsui Kazu "Sign of the Snow Crane"

Trying to get artistic...

noreply@blogger.com (KinnicChick) — Sun, 31 May 2009 23:42:00 +0000

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!

noreply@blogger.com (KinnicChick) — Thu, 28 May 2009 23:32:00 +0000

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

noreply@blogger.com (KinnicChick) — Mon, 02 Feb 2009 21:59:00 +0000

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?

Waiting...

noreply@blogger.com (KinnicChick) — Mon, 15 Dec 2008 17:03:00 +0000

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...

noreply@blogger.com (KinnicChick) — Tue, 09 Dec 2008 08:51:00 +0000

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

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.

Inspiration Needs Prayers...

noreply@blogger.com (KinnicChick) — Mon, 18 Aug 2008 15:50:00 +0000

Before I can write anything about our latest adventure to New Mexico over the weekend, I have a quick prayer request from a friend...

I came home to an email from a dear friend Natalie who writes:

I write this email with a heavy heart.... my best friend Melissa was diagnosed with cancer of the lymph nodes late yesterday afternoon. Many of you know her, and some on this list do not. She is a 33 year old mom of two young boys D__,age 1 and D__ almost 3. She is beautiful on the inside and out... I am asking all of you to please send this to as many people you know who will be willing to pray for her and her family. The only known fact is that she has a mass tumor in her lymph nodes in her chest and that her liver is enlarged. She underwent two surgeries today to find if the cancer has spread to her bones. My specific prayer request is that we pray that the tumor is encapsulated and has not spread, and that her liver is not affected by this cancer. Please also pray that God gives Melissa the strength and courage to fight this long battle.
Again, please forward this email.... we need MANY MANY prayer warriors.....

I'm asking that you all please include Melissa and her family in your prayers. Thank you.

sigh The Close of a Wonderful Vacation

noreply@blogger.com (KinnicChick) — Fri, 11 Jul 2008 19:42:00 +0000

HalfBrainBoy and I have returned from New Mexico rejuvenated. Don’t we look that way?

If we were any more relaxed, we'd be dead...

Yes, life was truly sweet during our time in the Land of Enchantment. We did miles of hiking, scared up a rattlesnake, several little salamander types of things (which I love and took photo after photo of), filled up both our digital cards with photos of each other standing on very tall rocks breathing in fresh air and just being generally happy to be alive.

We did what little driving we needed to do in a rented Prius and I fell in love with that vehicle, let me tell you. If a time comes when I am able to trade in one of the monster vehicles we are currently saddled with, that will be my trade of choice. But since both our vehicles are paid off and we don’t really relish the thought of a car payment any time soon, this is a tough consideration, even with the gas savings.

If interested in seeing more of the photos which I seem to have a hard time limiting myself in putting out on flickr, though I did start out well at only about 20 per day/activity… now that I’m home, the number is steadily increasing… you can head on over to my photo gallery where I have them all put together in our New Mexico 2008 set. If you aren’t a member of flickr (and it costs nothing to join), do join up so you can leave your comments on the photos. I do love me some comments about them (be nice, please - I only love the nice ones. heh) and will leave you a comment back if you leave any for me! It becomes a regular social hour out there. All sorts of fun. I spend more time there than blogging any more. Sad to say. But I have no time for blogging.

This week’s big time crunch is the truffle business. We have our local home town days. And woohoo! If our little bizniz isn’t going to be in the parade! I’m hoping Keith will be home from work tomorrow in time to be the chief photographer of our little group handing out literature and free truffle samples! In 100 degree Fahrenheit (heat index) weather! Can you say truffle soup? ;-p I’m wishing I had some rollerblades and knew how to use ‘em! AND I wish you were all here so I could meet you on the street and say hello. Now THAT would be a fun parade.

Cross your fingers that a twister doesn't come and blow us right off the parade route because that is the kind of weather that is fixin' to pull itself together this evening...
Smooches!

All Night Long!

noreply@blogger.com (KinnicChick) — Fri, 27 Jun 2008 00:21:00 +0000

I've almost reached a point of recovery from last Friday night's Relay For Life of Hudson. Almost. As you can see from my photo set out on Flickr, we had gorgeous weather with the exception of a very brief bout of high wind that threatened to blow in a severe thunderstorm just as the event was about to kick off. It blew some tents around and detached a few banners we had painstakingly hung up that morning in preparation for the event, a few spatters of rain fell, but aside from that, all was bright and sunny and gorgeous.

The Brain Trust donned our Pit Crew suits, decorated with patches which showed our sponsors from area business people and the names of loved ones who we were walking in memory and in honor of. (This is far less easy to see - the photos did not turn out great due to the very high sunshine and user error on my part - my apologies...)

It is always very difficult to try and name people in a post without the fear of forgetting someone (as I know I have in the past) and so I apologize in advance if I leave anyone's name off the following list of thanks. But for Keith's and my part, we would like to thank the following people who helped make this Relay spectacular by their participation and/or contribution in some way...

The members of Keith's Brain Trust. Every member is important, of course. Like any pit crew, one missing member and there could be a disaster. But as always we had the all important crew chief (two!) in Anonybro and Bonnie Wonka. Couldn't have done it without you!!!

Mom and Dad, thanks for making the hot dog stand happen. As you know, there was some serious fund raising that could not have occurred had it not been for that event. The raffle came together because of this, and our final hugely generous sponsor came on board that weekend after finding us there.

And all of the rest of the team are what make us a team! From workers at the stand to walkers on the track and brain power and assistants in other endeavors, you are all what make it happen. Thank you!

Inspirations and Dollar donors:

All of the above, because you know ya'll pitched in your own money (especially the crew chief and we have some money for you!)
Aunt Roz and Uncle Marty
Uncle Chuck and Aunt Helen
Uncle Howard
~d
Billy & Stace
Cheryl Ecker Moore
Jon Olson - C21 (and thanks for coming out to the track, Jon!)
Mr. Schlief (we missed seeing you this year!)
Mark
Carol M
Jenorama
KathyC
KathyK
CursingMama and her MotorcycleMan
Jeff the Barista
Natalie the Barista
Mommy Dodo
Peter S
Mystical Marge!!! (and for your photography skilz - because you have them whereas I do not!)
Lisa
Carolyn and John
Donna
Kris
Keith's mommy, Alta
Keith's grandma, Dorothy
Z
Zaney Janey M
Kimby
KatieK
Michele and Wes
Whathisface
Whatshername

There are bunches of people who have supported us for years and years in the past, as well. If I try to list them all I will definitely forget some and be terribly embarrassed. Know that we are grateful to each and every one of you. The cheers from the sidelines are so important to us, as well. I'm not going to try and link up to bloggers here. If you want me to, text or email me and I will. (I'm back in here today because I'm already trying to add people to the list. See? I knew I'd feel bad about putting a list in here because there would be people left off and I'd feel bad about people from previous years not included. I should not have tried to do this. I have lived with guilt for something my whole life and I don't do well with it.)

I'm tired. :)

There is more to tell. But not much. You can learn most of it in the captions of my photos...

Seven years...

noreply@blogger.com (KinnicChick) — Fri, 13 Jun 2008 06:07:00 +0000

Seven years ago today, we awakened from a fitful night's sleep in one of Rochester, Minnesota's small hotels, very retro in that it hadn't been updated in many years. Our alarm was set early so Keith could be at the surgical center prepped for his surgery well before the procedure was to begin.

I don't remember a lot about that day. I'm the queen at forgetting things I don't want to remember. There are many flashes of the day that I do remember, however. I remember the threatening weather. Terrible lightening as we crossed the street from the hotel to the hospital, holding hands and trying to joke about what would happen if they lost power in the middle of surgery. Trying not to think about the fact that there was a 50% chance he might not live through it.

I remember how very dark it was that morning. It was early. And it was storming. And we had a lot of apprehension. All of those things were contributing factors. I know that Keith remembers a lot of different details than I do. But I sure remember that darkness. And the chill I felt in the air. My fear. My teeth chattering.

I remember the frustration of the waiting. I knew that it would be hours and yet, it was still very difficult waiting those hours. And yet, the hours flew by very quickly. There was all of the frustration of sitting in the surgical waiting area trying to get my laptop to connect to the internet so that I could send out little email dispatch updates to friends and family. Finally giving up on that and making treks to the Mayo library any time I knew any piece of information. Using their computers to send out mini-missives.

I remember that Keith's mom was there, and my most long-time friend. My support system. And yet I needed that time to cocoon. And they were okay with that and kept each other company for the most part. I had to spend much of the day processing what was happening because it was all happening so quickly (his diagnosis had come April 13th and here it was, surgical day two months later after a couple of years of strange symptoms that had gone misdiagnosed and now brain cancer?).

I remember the surgeon's update. Telling me that he had removed the tumor from the hippocampus and amygdala calling it an amygdalahippocampectomy. He used his hand to demonstrate the size of the tumor being about the size of his thumb and that they'd taken a little margin around it. (That means brain matter folks...) He said they had also tested for seizure activity during the surgery.

I remember afterwards when HBB was in ICU for the post-surgery recovery and in the throes of some serious pain (I gotta admit, they were not great at pain management down there in his case - that was a big disappointment...) and I began my sympathy migraine. No surprise there, eh?

I remember when they pulled the drains from his head. Dear g*d I hope I never have to witness any of my loved ones going through anything like that again. I weep when I remember that.

I remember the kindness of some of those night nurses.

I remember his hiccups. And how they would NOT go away. And how nobody seemed to care. And how I ran all over trying to find some yogurt for him to eat while he had them because that had helped him get rid of them once. Imagine how hiccups must feel to someone who has had their skull cut open for deep brain surgery and then stapled back together.

I remember wondering if Rochester ever has decent weather or if all of the bad storms pass through that city (and I have to admit that HBB and I still wonder that whenever we watch the weather patterns coming into the cities).

I could go on for some time. There are many of these tiny details that come to me. But all I really want to say is, Happy 7th Half Brain Birthday, Keith! I'm so glad to be able to share in this and many other special days with you. This year I am extra grateful to spend with you. You will always be my Half Brain Boy. :D

There is only a week left until our local Relay For Life! Help us celebrate Keith's Brain Trust family team with a donation. Or just wish Keith a Happy 7th Half Brain Birthday with a donation to him!

Our thanks to bloggers Jen, Bill and Stace, ~d, Mark, Lisa, and Sharon for all you have done to help make this Relay successful! You rock!

RRRRRRRRRacing Against Time!

noreply@blogger.com (KinnicChick) — Wed, 11 Jun 2008 20:31:00 +0000

We're only 9 days away from the Race Against Time... A Walk to Find A Cure. It's our local American Cancer Society Relay For Life and our team is going all out to raise as much money as we can for this event.

If you are interested in getting on board, here is one more way you can help... it's too late now to add your patch to our pit crew suits, but we're raffling off this amazing mini Nascar hood (approx 28" x 30"). I can't sell them online, but if you are interested in this raffle, let me know! The beautifully painted hood is valued at $85-100 and our tickets are selling for only $2! (or 3 for $5).

If you'd prefer, you can donate to our team online to help us reach our fund raising goal by clicking on this link. Thank you so much!

Help us beat this cancer beast!

RRRRacing Against Time with Keith's Brain Trust!

What? You've never heard of Relay For Life? Never done it yourself? Don't know anyone else who has? Go check out our team's flickr photos from past years and see how much fun we have and then look for a Relay in your area. Then? Get involved! You'll be glad you did.

I'd rather be hiking...

noreply@blogger.com (KinnicChick) — Wed, 21 May 2008 06:32:00 +0000

You know, I've never been a huge fan of going out and asking for money, but it all depends upon the reason/cause. I hate asking for my own needs, but I'm a little less reticent to ask for a good cause. I've been a fund raiser for the American Cancer Society since HBB (HalfBrainBoy) was diagnosed with a Brain Tumor back in 2001 and as a result we joined our local Relay For Life in 2002. I didn't get a lot of money from it, but the most fun I had raising money for the Relay was the time I turned a hike into a fund raiser. I only wish I'd thought of it sooner. And I hope to try this again sometime (frequently)! This is a video I made from that experience. I had put one together a while back, but I remade it last night to show that gathering money for a good cause doesn't always have to be just asking. Although, that is a really important way to do it - the most important actually.

So here it is, our Hike for the Cure from 2006.

I'd rather be hiking, but this year, I'm asking. Teams are down. Funds are down. I know that finances are tight for a lot of people. I know that there are a lot of deserving places to give charitable donations these days. It's a very hard time to ask for money. But that's what I'm doing this year. If you have five dollars, ten dollars, twenty to spare, any amount will help provide a wig for someone going through chemo, a ride for someone who needs one to a doctor appointment, a piece of medical equipment for a person who doesn't have insurance... the list goes on and on and you can help.

Here's a link to our team donation page. From there, click on the STAR that says donate. If you don't have a credit card, you can click on any of the team member names and find a link to print an offline donation form to mail your donation in to the ACS.

Thank you so much for your time! (please pass the word on! :D)

Open Hearts

noreply@blogger.com (KinnicChick) — Tue, 29 Apr 2008 19:43:00 +0000

The blogging community is huge and very diverse. I have been fortunate to be a part of a very loving and giving part of that community. When I started this blog, it began as a fund raiser for the American Cancer Society's Relay For Life a couple of years after HalfBrainBoy's surgery to remove his brain tumor. And the blogging community that surrounded us came through and very generously gave to our team by opening your wallets and pitching in with donations or else by telling us stories of hope and love and loss which kept me going as I ran those long miles inspiring me in my journey.

This week, I would like to ask you to open your hearts for Jeni. If you do not know her, by all means, go meet her. She is a beautifully courageous cancer warrior and some of her Blogger Friends are running a Bloggers for Jeni Auction this week on eBay. The proceeds will help pay for medical expenses that insurance won't cover and provide a trust for her little boy (he's 6), Jack. There are beautiful things for sale at the auction.

Beautiful things for beautiful bloggy hearts.

A new BT Warrior

noreply@blogger.com (KinnicChick) — Tue, 22 Apr 2008 02:45:00 +0000

Our blog friend Michael Manning let us know this week about a new BT Warrior and pointed us to his Caring Bridge website. Please send your best prayers and wishes to young Gunnar.

Michael has posted a wonderful intro to Gunnar over on his blog.

You can keep updated on Gunnar's condition and learn about his treatment via his Caring Bridge site. Make sure and set up a bookmark! As you know, donations are always welcome.

Cancer Patients & Caregivers

noreply@blogger.com (KinnicChick) — Fri, 04 Apr 2008 18:47:00 +0000

Living Well with Cancer – April 19, 2008 Seminar

Washington Cancer Institute at Washington Hospital Center invites you to its second FREE Living Well with Cancer seminar of the year featuring Alice Matthews Beers, BSN, an oncology nurse and expert on cancer patient recovery. Beers will provide information and guidance on how to communicate effectively with your doctors and other health care providers about post-treatment issues. She will also address the importance of a healthy emotional recovery by discussing how to recognize and manage anxiety, depression and fatigue. The event will be held on Saturday, April 19, from 9 a.m. to Noon at the National Rehabilitation Hospital Auditorium located on the Washington Hospital Center campus, 102 Irving St., NW, Washington, DC 20010. To register, please call 202-877-DOCS (3627) or register online here.

HBB: Insurance and doctors

noreply@blogger.com (HalfBrainBoy) — Mon, 28 Jan 2008 20:56:00 +0000

There are times when I’m reminded that the medical world is a business. As all businesses, making money is important. There is nothing necessarily wrong with this. If practicing medicine didn’t provide money for doctors, hospitals, labs and research facilities, then who would get into the business? I know there is the argument of state-run medical care, I won’t touch that debate. And, I also don’t want to discredit that EXTREMELY caring nurses, technicians and doctors I have met in the medical community. But, if the facility these caring people worked for didn’t make money, these people wouldn’t have a place to provide their care.

But, I have found that I can get lured into a kind of comfort that the medical community is out for my wellbeing. They are. Just so long as they make money at it.

Of course, the same goes for health insurance. Only double.

As much as we might complain, what’s the choice? I don’t see another immediately available choice but to work with these two groups – the medical providers and the insurance companies.

Today, I was reminded of the money aspect of healthcare. I have the fantastic fortune of going to a good, very respected medical clinic near my home. Because this clinic is so well respected it even draws people from around the country. Unfortunately, this makes this clinic expensive. To be exact, most procedures at this place are around three times what the insurance company is willing to pay. NO, this isn’t some wildly exaggerated amount. Really, 3 times the “usual and customary” that my insurance will cover 80% of. So, doing my math, that means insurance covers about 27%. I talked to this clinic about their high cost. And, I kid you not, the business office person replied “well, we are three times BETTER than everyone else”. That could well be. I’ve checked that out and it likely is true.

I withheld some payments to this clinic to get their attention so they would help me work with the insurance. The woman in the business office agreed that I had not withheld these payments, I probably wouldn’t have gotten their immediate help to work with insurance. It was to no avail. The insurance company did not back down. The only change was that I had to go into a little room before every appointment and pay for the procedures before they were done. It was humiliating.

Finally, I tired of the expense and abuse and I contacted the insurance company. I asked who they would have me see in place of this renowned place. I went to the doctor they suggested. I have to breathe deeply before I start a spew of strong words against this medical experience. This doctor’s arrogance and incompetence wrecked a price on me that was phenomenal. My brother, a surgeon, heard my experience with this doctor. He suggested “quack” was too kind.

So, I decided to do whatever necessary to return to the good, expensive, effective place. I did. With a little work I have it up to insurance covering half the expense. On some seemingly random occasions, insurance has covered all the billing from this place.
So, this is the background to today’s story. Today, I got a call from the business office from this cutting-edge clinic. They told me that they had just gotten off the phone with my insurance company and my insurance company told them that I was losing my health insurance in two days.

Maybe your healthcare costs aren’t similar to mine. So, maybe this wouldn’t stop your heart quite the same as it stopped mine. I was shaking. I could hardly dial the phone to call the insurance company. I got a very nice, very helpful woman. She told me that sure enough the screen showed my insurance expired in two days. She asked if I had paid last month’s bill. I was already on the computer finding my cleared check online. Yep. Paid. Nothing else had changed.

Did I have a heartbeat? I don’t think so. She said she would go check something and she put me on hold.

She came back on and explained that the expiration date didn’t mean the same thing in my type of insurance and all was well and I would continue to be covered.

My heart started. I had no idea if I should be angry or grateful or relieved or annoyed or…. Had I not been at work, I likely would have let out some kind of yell – joyous or angry or otherwise.

I must say, both the person at the clinic and the person at the insurance company were very professional and helpful and kind.

Somewhere along the line, someone made a mistake. Mistakes happen. I’ve probably made a dozen in the last half hour.

I know I am amazingly lucky. I have absolutely nothing to complain about. I DO have insurance. I DO go to very good clinics. I AM doing better than anticipated. I do understand how many there are who are not so lucky.

But, it was still a scary view into how much I rely on this whole infrastructure of insurance and medical community, and these two getting along, and that all will work reasonably well where these are intertwined.

As of today, it appears there isn’t any unraveling going on for us. I think I’ll go eat some carrot sticks to celebrate. I guess the best way to avoid these hassles is to avoid the need for doctors. That's what I'm told, anyway.

HBB: A new toy leads to old pictures

noreply@blogger.com (HalfBrainBoy) — Tue, 08 Jan 2008 05:46:00 +0000

I'm having one of those nights.
It doesn't help that I didn't leave work until 9 tonight.
But, now I'm caught up in fun that could keep me up really late.
I've got a new toy. I bought a device to create jpegs from our old negatives (I'm afraid to say HOW OLD some of these are).
Many of these negatives have been stored in unheated/non-cooled storage for years in a severe climate. I have some negatives that have travelled several states and maybe countries. So, the quality of the negatives aren't great.
But, still, it's fun to turn these old pictures into jpegs.

Several down, thousands more to go. I just thought I would share a few.

First, Keri and I at an awards banquet. Back then, work was still a "formal" event. My small rebellion against the formal was long hair and the occassional pony tail.

Next, this is the three of us at our first Easter. Again, things were way more formal then. I think Keri and I had only been going out for two months here.

Then, the amusing thing is, this is our wedding photo. Really. It is. Casual. As in, wedding was held in 4-wheel-only-and-hike location above a glacier lake. July, but we got to have a snowball fight during the wedding.

This last is a really great memory. I'm happy to say this is my daughter. It's been a bunch of fun years being dad to her. I'm really, really happy I got that chance. I'd do it again in a second.

So, the negatives might be a little scratched and bent and faded. They've been through a lot. We have, too. But, they're clear enough to bring up memories.

With that, I am headed towards bed while I can still stop.

HBB: Happy New Year 2 - The List

noreply@blogger.com (HalfBrainBoy) — Tue, 01 Jan 2008 06:52:00 +0000

Okay, so I just said that my list of gratitudes for 2007 was too long to be started.

I lied. I am sure I will miss some major things that I am grateful for as I enter 2008, but here is a partial list.

1) I am overwhelmingly happy that Keri and I are back together and so close. This still feels a bit like a dream. It's wonderful.
2) I am extremely grateful that Keli and I are seeing each other so much and that I am able to spend some good dad and daughter time with her.
3) I am grateful for my good friends and family. So many have been there and haven't given up.
4) I am grateful for the work I have. I'm glad the work hiccups from last year seem behind us.
5) I am grateful for the good health. I am so glad that the concerns the neurologists had turned out to be nothing. I am so grateful for improvement of neurological functions.
6) Along those lines, I'm thankful for the determination by a certain doc to help get my seizure meds corrected. I can't tell you how much better life is with that improvement.

The list could go on and on...

--HalfBrainBoy

HBB: Happy New Year

noreply@blogger.com (HalfBrainBoy) — Tue, 01 Jan 2008 06:16:00 +0000

Happy new year!!!
I wish well to all in 2008.
I feel good about 2008. I start New Years 2008 in a much happier, healthier place than I've been the past couple of January firsts.

In past years, our family spent some time on New Years writing down gratitudes from the year past. This past year, I've had too many to even begin.

But, as I've thought about gratitude, I think about how things can work out. I've been lucky. Experiences I've had that seemed bad at the time sometimes ended up setting me up for something good. Lately, looking back and seeing how the good and bad experiences have been related has really helped through any new challenges.

There is this fable that has helped me keep this in mind.

So, as the start to 2008, as I sit here feeling grateful for how things have all worked out, here's my version of this story.

-----
There was a poor rancher who owned a horse. One day, the horse ran away into the hills. The rancher’s neighbors came to console him. “You must feel terrible”, they said, “What bad luck for you that your horse ran away.”

The rancher answered, “We shall see.”

The rancher had treated the horse well, so the horse soon returned home. When the horse returned, it was followed by several wild horses from the hills.

The neighbors returned. This time they said to the rancher, “You must be so happy. What good luck you have to have these new horses.”

The rancher answered, “We shall see.”

A few days later, while working with the new horses, the rancher’s son was thrown and broke his leg. He could no longer help on the ranch.

Again, the neighbors came to the rancher. They said, “You must feel so sad that your son broke his leg. This is such bad luck for you.”

From the rancher, “We shall see.”

Several weeks later, war broke out. The military passed through the rancher’s town. They took all the young men of fighting age to join in the battle. Because of the son’s bad leg, he was skipped. He stayed on the ranch.

The neighbors returned. This time they said, “You must feel so good that your son was skipped. This is such good luck for you.”

The rancher answered, “We shall see.”

Many years later, after the rancher had seen many things in his life, as he had experienced many fortunes and misfortunes, he had become quite old and frail. One day he sat outside his home.

A new neighbor dropped by. This neighbor saw the aged, ailing, nearly blind rancher. The neighbor said, “Old man, you are so old and so ill. You must feel sad that you are no longer young, that most of life is behind you. This is such bad luck for you.”

The rancher nodded and answered, “We shall see.”

--HalfBrainBoy

HBB: A dark room on a gray day

noreply@blogger.com (HalfBrainBoy) — Sun, 30 Dec 2007 22:01:00 +0000

It's 4pm on a gray day. I'm still in my sleepwear sitting in bed. The shades are open just a few inches to let just a little light in.

Nope, this isn't a bad mood.

Next to me Keri is hurtin big time from a migraine. I've spent the day bringing up various ice packs and keeping her company. That's about all I can do. The dark room, ice packs and rest are about all she can do for these. Lately, they've lasted days and made her feel really crappy.

I'm glad I have this day off. I may not be able to help out, but it's nice I can be here to try. Keeping quiet is a challenge for me. In case you hadn't heard, I do have moments of lack of coordination. This can lead to thumps and crashes. :)
We're thinking about trying a audio book now to see if this will provide a good distraction from the pain. It can't hurt. But, I guess that's easy for ME to say.

HBB: Results Good!!

noreply@blogger.com (HalfBrainBoy) — Sat, 22 Dec 2007 22:40:00 +0000

Okay, so after we got the good results on Monday, things zoomed right back into the hectic swing of things. All of a sudden, it's Saturday, and I haven't posted!

Here's how it went. KinnicChick and I stayed in a Hotel near the hospital the night before the MRI. I had the MRI very early in the morning. Then, we waited for the eternal hours between the MRI and the meeting with the neuro-oncologist. We got coffee and wrote and wandered around.

Then, we went for the appointment to get the initial results.

First, we had a bit of a shock. The doc pulled the wrong MRI results on to the computer screen. These MRI results showed a pronounced tumor in a brain. The results made no sense since this showed a head with much more brain than I have. But, it was still an initial shock. The error was corrected and the doctor displayed MY results.

All looked good. I've formed an almond-size cyst that is new since the last time I was in. But, this is no problem.

All in all, very exciting news. Much relief.

Then the doctor looked back at the recent tests on my brain function. He looked at the results, then the MRI, then the results. He told me that he would not have expected the good level of memory I have based on the MRI. He told me that I must be exercising my brain in the right ways. That was nice to hear.

Afterwards, KinnicChick and I talked about how much it surprises us each time we see the MRI results. Let's just say that we were reminded that "HalfBrainBoy" is quite the appropriate name. And, I appreciate the doc's nice words about how I've been able to use what I've got. I've been lucky. And, I've had wonderful people around to help me.

Now, it's time to head into the holidays. Especially this Christmas, I think I'll have one of the nicest Christmases ever. I think this Christmas I'll likely feel the most gratitude ever.

There are my most favorite christmas cookies! KinnicChick's secret recipe. Time to start the holiday feasting.

I wish the best to you and yours.

HBB prompted to remember "then" and "now"

noreply@blogger.com (HalfBrainBoy) — Fri, 14 Dec 2007 03:26:00 +0000

The post yesterday about the MRI had caused me to reflect a bit. It's been a wild ride.

Things are so good now.

I was looking for pictures to give an idea of how good things are now, compared to a things didn't looks quite so good.

What better than a picture as I left the hospital after surgery side-by-side with one that shows this summer's fun?

Your brain in pain:

Your brain having fun:

Any questions???

Just so there isn't any doubt, I opt for the "brain having fun".

Oh, and one last thing. Keri, when you try to make rabbit ears above somebody's head, make sure they aren't wearing a hat. :P

HBB: Thoughts on brain tumor follow-ups

noreply@blogger.com (HalfBrainBoy) — Thu, 13 Dec 2007 03:20:00 +0000

Monday will be an interesting day.

I approach Monday with very mixed feelings.

Monday is my regular follow-up brain MRI to see if everything is stable. After the MRI , there is the wait for some of the most intense hours experienced. Then, there is the meeting with the neuro-oncologist to get the results.

I would be lying if I said I didn't have any worry. Maybe just a tiny bit. But, the day I have these MRI’s are also like my own personal Thanksgiving Day.

I have a new set of feelings about these brain MRIs each time I have them. But, there is no way I can approach these days as “just another day”. I knew a brain tumor survivor, a guy who had a similar type of tumor. He said that, after years, he approached these follow-ups as nothing more noteworthy than a dentist appointment. Years down the road, one of these “dentist appointments” changed his life.

I think I’d lose out on something if I felt that these MRI where nothing more than dentist appointments. I think I’d miss out on an opportunity to feel such intense feeling of gratitude and relief.

I was recently listening to someone who was waiting on biopsy results. She described the feeling so well. She said, “I KNOW this is NOTHING…but there is just this part of me which realizes this COULD be something.”

Exactly. There is always the "what if".

Monday, I will get good results. I know I will.

I hope. Life is too good right now.

So, I know they won't be finding any enhancement or growth. All will continue to be stable. But, there is a small voice tapping me on the shoulder, “…but, it COULD be something”.

And, I probably pay a bit more attention to that small voice because I’ve experienced receiving the unexpected call, “we’re sorry to tell you, you have a brain tumor….” After experiencing the unimaginable, you realize the unimaginable can happen.

I don’t really think this is a sign of excessive worry. This MRI really IS nothing. But, it gives me a chance, if I will pay attention, to realize how lucky I’ve been that it always been nothing. And, once again, I have a vivid reminder of how far I’ve come.

These days are strange. I’m working. I’m playing. I’m doing housework. Keri and I are reading or watching movies. Then, suddenly, in the middle of it all, there is a date on the calendar that could throw everything into a single-minded fight for survival. Again.

It won't throw us into a fight, because the results will be nothing. But, still...

I’ve been reminded that EVERYONE, each day, has the potential of running into some unexpected life-changing crisis. I realize this. But, I have this on my calendar. It’s different when it’s a single point in time. Monday: Celebration or Crisis? I guarantee that by the end of the day, I will be feeling something fairly intense.

And, I’m told I’ll likely have these follow-up appointments for life. Part of me groans at the hassle. Part of me wants to forget about it. But, fortunately, there is now still a part of me that appreciates this as a reminder to be thankful. There is nothing like the big relief from good news about a brain tumor.

Now to make the big decision, which kind of music should I request on the headset in the MRI? And, where to go out to celebrate after the good news?

Let the Records Show, You Have Been Warned

noreply@blogger.com (KinnicChick) — Tue, 04 Dec 2007 15:05:00 +0000

I head to the local Relay For Life 2008 Kick off meeting tonight to pick up the packet for the team.

Yes, it's that time of the year again for all things Relay to enter my head and begin to swim around and take root. I may not be on the committee this year (thank goodness for a break for my wee brain from that) but that just means I'll have more time for our team and to have more time getting creative with ideas for fund raising and having fun!

Expect to hear more about the power of purple from me around here. Maybe you'll consider a quick donation for the holidays? I mean, what's better than tossing your money to a great cause like cancer research than tossing it away on more unnecessary disposables?

And? If you live in the area and happen to read this site, I may be hitting you up to be on the team. I love a full team of 15 people. The more the merrier. If you haven't been on it before but have considered it, consider it hard. If you have been a member of the Merry Brain Trust (no, I'm not changing the name, but it is the Holiday season), be prepared for recruitment season to begin. My new Team Captain and I are looking for YOU.

Give that some thought and bookmark my site. We'll talk.

500 Miles 2 Nowhere

We've Moved!

In Memory of Rob...

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.

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.

Looking for Health

Waiting...

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

Inspiration Needs Prayers...

*sigh* The Close of a Wonderful Vacation

All Night Long!

Seven years...

RRRRRRRRRacing Against Time!

I'd rather be hiking...

Open Hearts

A new BT Warrior

Cancer Patients & Caregivers

HBB: Insurance and doctors

HBB: A new toy leads to old pictures

HBB: Happy New Year 2 - The List

HBB: Happy New Year

HBB: A dark room on a gray day

HBB: Results Good!!

HBB prompted to remember "then" and "now"

HBB: Thoughts on brain tumor follow-ups

Let the Records Show, You Have Been Warned

sigh The Close of a Wonderful Vacation