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!
Just a quick post to say that HBB had his annual ride in the tube this morning.
Posted by KinnicChick at 11:03:00 AM
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.
Posted by KinnicChick at 2:51:00 AM
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.
HalfBrainBoy and I have returned from New Mexico rejuvenated. Don’t we look that way?
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...
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
- 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!)
- Carol M
- 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!)
- Carolyn and John
- Keith's mommy, Alta
- Keith's grandma, Dorothy
- Zaney Janey M
- Michele and Wes
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 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!
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.
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)
Posted by KinnicChick at 1:32:00 AM
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.
Posted by KinnicChick at 2:43:00 PM
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.
Posted by KinnicChick at 9:45:00 PM
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.
Posted by KinnicChick at 1:47:00 PM
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.
Posted by HalfBrainBoy at 2:56:00 PM
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.
Posted by HalfBrainBoy at 11:46:00 PM
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...
Posted by HalfBrainBoy at 12:52:00 AM
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.”
Posted by HalfBrainBoy at 12:16:00 AM