Team Bear riders after finishing 65 miles… some would say, the cutest couple on the course!Lucifer and some pals…
The bike was sometimes the rock star in the crowded field… with almost 4,000 bikes, it certainly was the most unique. Team Bear, 6 riders strong, had a great time in the hill country outside of Austin. The Austin LiveStrong Challenge and the Ride for the Roses brought in a little over $4million dollars with a total of $10.1 million raised in all four cities total. Team Bear in Seattle was the number 4 team with $25,689 raised. Kevin brought in $17,649 to the Lance Armstrong Foundation and was honored by being invited to ride in the front group of the Austin LiveStrong Challenge and Ride for the Roses. While I didn’t get a chance to actually meet Lance, I was privileged to attend several events where many, many special guests were honored for their efforts to help the Livestrong movement.
We met lots of great people throughout the weekend and look forward to continuing some of those friendships. There were people from around the world there.
We also learned that Seattle will again host a LiveStrong Challenge in 2010! June 18-20 Seattle will play host to a great event and Team Bear will ride, run and walk again! Stay in touch if you might be interested in joining us, and get out there and ride your bike!
Just back from a 24 mile ride, trying to shake out some of the cobwebs in my head. Last couple of days have been miserable sometimes as memories and emotion flood my mind. I had to get out and focus on the road ahead of me, literally. Not that riding keeps me out of my head, it just slows the rest down as I have to concentrate on what the next 10ft, 100 yards, and 2-3 miles bring me. Map and stats of the ride here.
Speaking of goals ahead:
October 23-25 Team Bear will be traveling to Austin, TX for the Ride for the Roses and the Austin LiveSTRONG Challenge.
At this point I have received my invitation to ride with Lance in the Ride for the Roses that weekend, once I reach the $15,000 mark I am provided a friend invitation and Michael will be joining me. Marc has purchased tickets and has committed to extending his fundraising efforts to qualify him for the Austin Challenge event that same weekend. Marc has also taken on the task of recruiting the other Team Bear members in joining us! So here we go again!
I am really looking forward to heading down there, and having as many Team Bear members join us in Austin is going to make it that much better! The Ride for the Roses is going to rock, as we will be peddling along with 7 time Tour de France winner and as of today 3rd place winner of the 2009 Tour de France, Lance Armstrong! Go Lance! With less than a year of racing, Lance’s comeback is something else!
Kevin and I went on a mini but sweaty and tough uphill ride this evening. Ugh. Warmer air, car exhaust and traffic made me feel pretty vulnerable to the upcoming 70 miles. I keep chanting, it’s a ride-not a race, it’s a ride-not a race. It’s a sort-of Little Engine that Could chant. I have to think too that, I am healthy and capable. No matter how slow or hard riding the bike is, it’s a lot easier than what my brother and Beth are doing.
Beth returned from her trip to Geneva and dramatically lost some physical capabilities. Because the chemo therapies are not working, her tumor is growing and therefore putting pressure on areas of her brain. This has caused her to loose the ability to move her right arm and leg. She is now unable to walk or move from place to place without assistance from Kevin, me or someone else. So, I have to think 70miles-no big deal. I’m healthy and capable to do almost anything all by myself, and I’m thankful and humbled by that.
I’m leaving Sitka tomorrow to be with Beth and Kevin. I finished my last ride (39 miles) here before packing up the bike for Seattle. The ride was free of my ipod and cell phone, leaving me only with the thoughts of landing at their doorstep. Beth returned from her trip and I think they have had some difficult days. I’m looking forward to being with them.
Here are some pictures of Beth. I just wanted to post them. This ride and trip is about her, so here she is.
So I have been battling a cold and allergies for the past week plus and haven’t been out on my bike. Its killing me! I plan to get on the saddle tomorrow morning when I head in for an appointment down near Pike Market. Looking very much forward to spinning my wheels a little.
Things around here have been good, although challenging. We had a great weekend with a Saturday picnic (read more on Beth’s new blog http://www.offthetopofmyhead.org ), and a productive day around the house today and some fun running around with Beth this afternoon. Things have recently gotten a little harder for Beth as she has more right side weakness in her arm, hand and leg. She also has had more difficulty with her speech, particularly when she is tired. My heart aches a lot more these days and I find that I am a bit more tired too…
You may notice that we have gone far past our fundraising goal as a team. Thank you to everyone who has put a little something forward in our salute to our incredible Beth. I am only a few steps away from making my goal. I just so wish that somehow we find what is necessary to reach a goal for Beth in halting the tumor growth. We will continue to fight and will never give up hope for Beth!
thanks again for everyone’s support! We love you all!
Like I wrote in my last post, this week has been a metaphorical hill workout. Beth started a new treatment yesterday called BCNU or Carmustine. BCNU is in the same group of alkylating agents that some of the other therapies that she has done already. This one however has a slightly different mechanism of disrupting cell division. It’s goal being one of putting mutated cells into a “programed death” faster than other cells, as well as disrupting their ability to replicate.
A little cancerous cell 101…
Cancerous cells are different than normal cells due to several factors including unchecked or controled cell division. Cancerous cells lose the ability known as inhibition (“Normal” cells stop dividing when in contact with like cells), a normal process in the cell lifecycle. The cell cycle goes from the resting phase, through active growing phases, and then to mitosis (division).
The ability of chemotherapy to kill cancer cells depends on its ability to halt cell division. BCNU works by damaging the DNA that tells the cell how to copy itself in division. By disrupting this process the cells are unable to divide, and they die. The faster the cells are dividing, and often times cancer cells divide at higher rates than normal tissue, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink. They also induce cell suicide (or apoptosis).
Chemotherapy is most effective at killing cells that are rapidly dividing. Unfortunately, chemotherapy does not know the difference between the cancerous cells and the normal cells. With BCNU some of the side effects are from this lack of targeting, so keeping an eye on Beth’s blood counts (white cells and platelet counts) is important.
Each month we expect to see a “dip” in her blood counts, but as long as we see a recovery, and the counts don’t go so low that she would risk a serious infection things should be fine. After 6 weeks Beth will go back in for an MRI scan to see how the therapy is working and we will re-evaluate the next round of treatment.
While what any of us would go through for recovery from a big ride, or a short “hilly” training ride is no where near what Beth’s body has to go through after her treatments. I am reminded by both that taking a little time is important to our recovery. One step in front of the other, or one peddle stroke at a time…
Finally headed out for a ride today. Wasn’t really feeling it but new that I needed to get out on the bike. Without realizing it I was doing a lap around West Seattle, tackling some big hills. Metaphors are becoming more common in my life, or I am just aware of them more often.
As some know, we have been tackling a couple of hills in Beth’s treatment regimen as of late. It was determined that her previous treatment wasn’t working as required to continue using that protocol (Avastin and Carboplatin- see post on Feb 14). After a lot of research and a false start on a possible clinical trial, we have decided on a chemotherapy called BCNU or Carmustine. We will be in at the hospital once every 6 weeks to the infusion clinic for a couple of hours for the administration. That part of it doesn’t seem so bad, specially as our two choices were. The part that we don’t know much about yet are the fatigue and blood count side effects. So for that we will just have to wait and see.
So for the ride I found myself climbing Highland Park Dr down near the Duwamish, going almost 3/4 of the way up and being overwhelmed by the climb and the cars powering up past me. I turned around, coasted down hill and once at the bottom decided to try again. If you take a look at the map and view the elevation you will notice that the last 1/4 looks to be around an 8% grade. I pushed myself over that piece, looking down at one point to see that my speed was right around 4.5 mph! My legs screaming, but my mind looking ahead.
Arriving home. 12.7 miles, 56 minutes, 13.6mph average
In the 110th Congress concurrent bills were introduced to eliminate the waiting period for those with life threatening conditions and need access to health care coverage. Ending the Medicare Disability Waiting Period Act (H.R. 154/S. 2102). This important legislation would improve access to health care for many Americans, including individuals with brain tumors. For those with life-threatening conditions, the 24-month waiting period to receive Medicare would be eliminated. Neither bill was given time in Committee and have expired with the adjournment of the 110th Congress. The 111th Congress has yet to introduce similar legislation and we need to urge our elected officials to act now!
Please consider contacting your legislators and ask them to sponsor similar legislation. You can find a sample letter HERE
If you need contact information for your legislators the Brain Tumor Action Network has a great interface.
12,000,000 new cases of cancer will be diagnosed this year throughout the world!
Sixty percent of all cancer is preventable. One-third can be cured if detected early and treated adequately.
By 2030, there COULD be 27 million incident cases of cancer, 17 million cancer deaths annually and 75 million persons alive with cancer within five years of diagnosis.
The National Cancer Insitute’s total budget for Fiscal Year 2005 was $4.83 billion. The NCI invested an estimated $4.79 billion during Fiscal Year 2006. The budget was decreased to $4.75 billion in Fiscal Year 2007. 2008 and 2009 fiscal packages for the NCI were decreased as well.
After years of hampered efforts in US Government spending and research, 2010 will be a different story, with an additional $1 Billion set aside for research, prevention and screening in the 2009 stimulus package. The proposed increase in funding for medical research at the National Institutes of Health and the National Cancer Institute will make a big difference in the effort to fight cancer after years of flat or cut federal funding for medical research. Stem cell research will also be reopened to a broader range of options, finally being monitored and controlled through scientific standards rather than one groups moral values. The war on cancer steps up, and those 2030 numbers could look much different.
Aside from national funding, groups around the world have step up their fights. Tobacco control and prevention has made great gains around the world and we expect a very different priority from the Obama administration. Research, prevention, screening and survivorship are top priorities in the funding goals of the Lance Armstrong Foundation. LAF last year awarded over $3 million in grants to research, patient care, centers of excellence. It also provided support to over 6,500 newly diagnosed patients and their supporters, providing a new look at surviorship and life to hundreds of thousands of people. I for one am one of them…
According to the American Cancer Society, about 21,000 malignant tumors of the brain or spinal cord will be diagnosed during 2008 in the United States. With about 50% of them being Glioma type tumors and less than 50% of those being anaplastic astrocytomas (the kind that Beth has been diagnosed with. About 13,000 people will die from these tumors. This would account for about 1.5% of all cancers and 2.3% of all expected cancer-related deaths in 2008. Malignant tumors are most common in adults ages 45-55, and affect more men than women. Anaplastic astrocytomas occur more often in younger adults.
Last month I wrote about the fact that the first round of chemo treatment that Beth started last year was determined to be ineffective. She has been through a couple of rounds now of her new treatment. The new protocol is somewhat new in the worlds of brain tumor treatment and there have been some great anecdotal stories about its success. Hard data though isn’t yet available from most sources.
Twice a month we will be making a trip to the hospital for infusions of her new chemotherapy drugs. Once a month it will be a combination of two different drugs, Avastin and Carboplatin. Then two weeks later we will be back for a single infusion of the Avastin. Both of these drugs have been around, used with other forms of cancer as treatments and have been recently been approved by insurance companies and Medicare for use with some types of brain cancer. The FDA hasn’t officially approved the combination, however reviews are in progress to have Avastin approved.
Avastin is a drug from the cytostatic group, and works to interfere with a tumors ability to develop blood vessels to it, effectively starving the tumor. It also makes the tumor more receptable to any cytotoxic agents, like Carboplatin, helping to kill tumor cells.
Our days at the hospital can be long when we go for the combination of infusions. The first time we went in we were there for 6 ½ hours. We hope that those times shorten as the process becomes easier for Beth to tolerate the drugs. The days where only the Avastin is administered we expect to keep under 4 hours, providing all is going well in the various departments that have to interact during the treatment (lab, pharmacy and the infusion unit). One nice thing about the location of where we spend those hours is that they have a great view of Montlake and Mt Rainier!
One other fact about Beth’s current treatment… Avastin is possibly one of the most expensive drugs out on the market right now. We just got the first notice of billing from the UW; almost $9,000 each treatment! So that would total almost $18,000 each month! Remains to be seen of course how much the insurance will reimburse. Good thing Beth’s treatment team worked on getting the pre-authorization before hand! I feel sick thinking about those who don’t have insurance, or can’t get it covered….
some would say, the cutest couple on the course!
Lucifer and some pals…
Team Bear, 6 riders strong, had a great time in the hill country outside of Austin. The Austin LiveStrong Challenge and the Ride for the Roses brought in a little over $4million dollars with a total of $10.1 million raised in all four cities total. Team Bear in Seattle was the number 4 team with $25,689 raised. Kevin brought in $17,649 to the Lance Armstrong Foundation and was honored by being invited to ride in the front group of the Austin LiveStrong Challenge and Ride for the Roses. While I didn’t get a chance to actually meet Lance, I was privileged to attend several events where many, many special guests were honored for their efforts to help the Livestrong movement.
