Tuesday, June 29, 2010

letting go, moving on

I think (hope) I have finally reached the point of letting go of my self-pity and just getting on with things. By 'things' I mean mental things. I have been moving on with my life but still was kind of stuck in a rut of 'woe is me' even while I realized that others do have it worse than me. Not to belittle brca, but it is not the end of the world - that is, I won't let it be the end of my world. That being said, I'm kind of over talking about my life and my brca journey. I'm not really doing anything at the moment, other than surveillance (depending on my upcoming mammo and dr visit). And wt is doing well and healing and just about all filled up and waiting for her exchange. So I don't have much to share anymore, brca wise. I will probably continue to blog, but may try and change it up a bit and maybe focus on groups/people/organizations that are helping the cause.

It has been a year now since I flunked my first mammo. Almost a year since I found out I had cancer and almost a year since I first heard that four-letter word, brca. I've grown a lot in that year: learned a lot, cried a lot and changed a lot. It is time for me to shift my focus elsewhere and to shove brca to the back of my brain and only bring it out for dr appointments, breast exams, etc. Ha, ha! That won't likely happen but you get my point. I'm done moping and feeling bad. I'm ready to let go. So what if I might have to cut the bitches off eventually. I will get over it.

I just realized the other day that on my one year anniversary of my lumpectomy-reexcision surgery, I will be backpacking the zion narrows! How awesome is that! I've been wanting to do that ever since the day hike I did in the narrows several years ago. So you see, there is life after brca and it is great:)

Wednesday, June 23, 2010

blog roll

If you haven't noticed, my blog list (on the left side of my page) contains some recent additions. Please let me know if you have a blog you'd like me to add.  One blog that I added combines my new love, biking, with the whole reason my blog started, cancer. The Fat Cyclist blogs about his love of biking and also raises a ton of money for cancer through his blog. His writing is very entertaining and humorous and he is one of the top followed biking blogs in the states. I have pasted an article about him below and just want to add a disclaimer that his wife's story did not have a happy ending. Fatty continues to blog, raise money for cancer, and get out and ride his bike and enjoy life.

Susan Nelson lives strong while Fat Cyclist husband raises money for Lance Armstrong Foundation

Susan Nelson lives strong while Fat Cyclist husband raises money for Lance Armstrong Foundation

July 14, 1:18 PMMichigan Mountain Biking ExaminerDiane Ursu
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In May 2008, Elden found this photo of Lance Armstrong in his email.
It started out as a simple blog about a "fat" mountain biker and progressed to a powerhouse for raising money for the fight against cancer.  Elden Nelson is a witty mountain biker who thousands of Internet surfers consider to be a friend.  They read his blog every day to enjoy his funny stories and unique viewpoint. They also keep coming back to see how his wife, Susan, is doing.
Win Susan!
"Win Susan!" is a phrase that is found throughout pages and pages of comments on the Fat Cyclist blog. Elden's readers have joined together to offer whatever support they can, whether it be spiritually or financially. 
Susan first found a breast lump around Christmas of 2003. She underwent a mastectomy and chemotherapy. She got well and began working out to gain strength until she started experiencing hip pain. After treating it like a sports injury, she went to the doctor to find that her cancer had metastasized throughout her body. In 2008, tumors were found in Susan's brain after she had lost her ability to fall asleep.
Fat Cyclist readers have journeyed with Elden and Susan during her chemotherapy and radiation treatments. They eagerly read with hope and pray for strength for the couple. Kleenex boxes sit by computers worldwide as readers share in the joy and sadness of the Nelsons' life.  They are also awestruck by the strength and courage of Susan.
While Susan's prognosis is undesirable, she continues to live life to the fullest extent that her body will allow. When she is able, she draws with her children and writes. She enjoys making jewelry, an art she can no longer practice on a regular basis, and created some pieces for a fundraiser for the fight against cancer.

Elden Nelson, aka "Fatty."
Be strong, Elden
What is particularly amazing about Susan's story is that it is told by her husband, Elden, who is affectionately known as "Fatty" by his readers. Elden's purpose has been to do everything he possibly can to make life better for Susan. This is his struggle.
When Susan was first diagnosed, Elden searched for a new job with better benefits so they could better afford treatment. After moving several times, they bought a home in a Utah neighborhood so Susan could be closer to friends and family. As Susan's cancer progressed, Elden made changes to the home so she could move around easier. It became a constant fight for Elden to accommodate his wife. He simply wanted to make things better for her.
Elden couldn't do it alone, though. He expressed his frustration on his blog, and his readers responded with prayers and advice. One of the greatest pieces of advice that was echoed throughout the comments was to keep riding. In order for Elden to take care of Susan, he had to take care of himself. He did not want to take away from his time with her, but mountain biking was therapy, and he knew he had to do it.
Fatty's fight against cancer
Fat Cyclist readers are quite acquainted with the "Win" Special Edition Fat Cyclist jersey, a jersey made by Twin Six with all proceeds going to the Lance Armstrong Foundation. Many of Fatty's lucky readers get to sport the fabulous jersey, and they wear it with pride. 
Twin Six has been quite supportive of Elden and Susan and has made a lot of Fat Cyclist gear. In the fall of 2008, Twin Six went beyond the standard jersey to provide long sleeve winter jerseys, bib shorts, and arm warmers. Twin Six's generosity went way beyond providing fundraising product for Fatty, though. In November of 2008, for one week, Twin Six donated half of the purchase price for every Twin Six jersey sold to assist with Elden and Susan's medical costs.
Livestrong Challenge
In January 2009, Elden took on a big project – one that may be much more successful than he had anticipated. He rallied the Fat Cyclist troops to form Team Fatty with members from all over the country. Team Fatty set out to win the Livestrong Challenge.
Tour of California. Fatty decided that Team Fatty just was not enough. In February, he live blogged during the Tour of California and had the fantastic idea of having Bob Roll, former pro cyclist and Versus cycling commentator, shave his head if $5,000 could be raised by the end of the Tour. Over $8,500 had been raised and Bob was clipped on television. Lance Armstrong was even present for the moment of truth. 
Team Fatty. Team Fatty continues to raise money for the Livestrong Challenge. Team Fatty raised the most money for both the Seattle and San Jose Livestrong Challenges. The Philly Livestrong Challenge will take place on August 23, 2009, and the Austin Livestrong Challenge will be held October 24-25, 2009.
As of July 14, 2009, Fatty's web site reports that $411,178 has been raised by Team Fatty. It is simply incredible how so many people came together to fight against cancer.

Elden and Susan celebrated their 20th anniversary on
August 13, 2008.  Elden posted this picture with a single
:  "With the right woman, 20 years doesn't feel like very
long at all."
A story of love and dedication
Elden and Susan celebrated their 20th anniversary on August 13, 2008. Twenty years is remarkable in and of itself, but it is even more amazing when faced with the challenges Elden and Susan have had to endure.
They are remarkable people. They have brought thousands of people together to fight a great cause. They bring joy and humor to the lives of Fat Cyclist readers. They also bring hope that love is real, and that is evidenced by Elden's devotion to Susan in her struggle with cancer.
They are like anyone else, however. They are raising four children – two sons and identical twin girls. He works to provide for his family. She is writing a novel. He rides bikes. What sets them apart is that they allowed themselves to rise above their challenge in life, and they inspire many others to do the same.
 For more info:  Fat Cyclist

Thursday, June 17, 2010

the ride of my life?!

Well, I survived the ada tour de cure last saturday but I did fall a little bit short of my goal. My distance goal, that is. I surpassed the fundraising goal I had set of $500. $550 and counting so far! I have a few more weeks to turn more money in. Thank you everyone for both your monetary support and your words of support. All were appreciated:) Oh, I did met my goal of not needing any gel (at least for myself)!

The morning started great with a fasting blood sugar of 93. Normal people run sugars between 80-120. My sugars can range from 0-infinite. Well, not really because some of those extremes could kill me but I do run from the 40s to 200s often and occasionally will get even higher. Mornings are usually the hardest time for me to control so to start with a good number is a bonus. Of course, my number jumped to 200 by race start, but I was ok with that since I prefer to exercise around 180 anyway and I can drop very quickly when biking. But the first couple hours my number kept climbing and hit about 300 before it finally started going down. I was hesitant to shoot up (take an insulin injection) because I have dropped from 300 to 63 on previous rides so I let it play out and finally it started going down. So I finally had a snack at the third rest stop and my numbers were great after that. A nice steady, slow drop until the lunch stop where I tested at 102, had a sandwich and finished the ride with a 187 at the last rest stop and a 112 at the finish line. Of course I figured my exercise would still be causing my sugars to drop so I again skipped my insulin, ate one third of a chicken burrito and a hand full of lemonheads (candy), drove an hour home and tested at 450! I guess I really do have diabetes:) That's just a little private joke. When I was diagnosed with diabetes I felt like how do they really know I have it? They just take a little bit of blood or urine and tell you within minutes you are diseased. Seems too simple especially compared with all the tests and waiting to find out you have cancer.

The day started out pouring in salt lake city, but not in brigham city where the race was so that was very fortunate! The first 25 miles or so were fun and uneventful. I started getting a little tired after that which is no surprise because I've only biked more than 25 miles once this year and maybe twice in my whole life! Why the hell did I sign up for 100 miles??? I thought it was a great idea for two reasons: what better way to celebrate 25 years of living with diabetes then going out and killing myself trying to prove that I can do anything you can do better?:)  The other reason being that I was mad at my body for what I've been going thru the last 11 months. I feel like it was trying to kill me so I thought I'd teach it a lesson and show it who was boss. I wanted to bike 100 miles and then stick up my two middle fingers and give my body the bird. But I rethunk that a couple days before the event. I think I need to give my body a big hug because after all, I CAN still do the things I enjoy and I haven't been kind to my body or given it much of a chance to recover from all my surgeries and procedures. So I'm not mad that my legs pooped out and I couldn't do the whole 100 miles. My heart was still going strong and there will always be a next time.

Above is a pic of me taken by zazoosh somewhere in the first 45 miles. I put my jacket on after that and left it on for the rest of my ride.

The middle of the course was the hardest. There was a long, gradual climb which then turned into a big hill which somehow I made it up. I was so happy because I thought the worst was over. For some reason I thought there was only one hill on the course. But it turns out I was just on a plateau and the bigger hill was still ahead. I was shocked and dismayed to see little yellow figures in the distance snaking up a mountain. I have to admit that once I reached that hill, I got off my bike and walked it to the top. I contemplated hitching a ride to the top but didn't want to cheat. The ride down this giant hill was not that much more fun for me because I really don't like going down hills very fast. Rode my brakes as much as possible and held on for dear life hoping that my front tire wouldn't pop off or get a flat. Finally made it to the bottom and then hit a nice, flat section that was my favorite part of the whole ride. Flew the next mile with a tailwind and truly enjoyed it. Wish the whole course was like that! The rest of the course was mostly flat but very windy and slow going. There was one more hill, which was really short and not much worse than an on-ramp, but I was disgusted with hills by then, and my legs were dead, so I walked up that one too! Made it to the lunch stop at mile 60 and had the best tasting sandwich of my life! Ever notice how food tastes so good when you are exhausted and hungry?

I am not one to make excuses so I'm not going to blame the weather as a reason that I did not complete the whole 100 miles. I did bike through the finish line, after taking a shortcut in the route and completed 85 miles, of which all were hard-earned and I am pleased with the effort that I made. Just 15 miles short of my goal? You may wonder why I couldn't go on for just 15 more miles, but I had to make that decision at mile 60 and I was pretty tired by then and didn't think I would even make it back under my own power. I decided to skip a 15 mile loop and head back to the finish line, 25 miles away. That last 25 miles was a bitch. Normally, I think this part of the ride would be nice because it was pretty flat but it was such a windy day and the wind was especially picking up here along with some rain and my butt was really starting to complain. I did pull over for a break on the side of the road several times and repeatedly had to tell the sag vehicles that no, I did not need a ride. At one point I stopped to wait out the wind because I feared I would be blown off the road. At that point, three young boys ran up to me from a nearby house and said they were about to hold their hands out to me as I passed by. Turns out they did that once and were handed a bunch of candy. I explained that I had no candy, just some gel which really wasn't that good. They questioned what it was and I explained that it was just sugar at which one boy smiled and said "I like sugar!" So I opened up a ginseng honey stinger for them, they tried it out and pronounced it great! Then a large group came by and the kids stuck out their hands and got high fives in return. As I trudged on they yelled out their thanks for the honey.

9 hours and 85 miles completed on a cold, windy day. I can't say that it was a fun ride. I did contemplate selling my bike a couple times during the ride. I wouldn't want to keep biking if all rides were like that one! I don't know what the official word on the weather was. It was forecast for 15mph but it seemed stronger. I do know that other towns nearby had 50+ winds that downed trees and powerlines. I don't think our wind was that bad but it wasn't good either:) I did have some good moments during the ride, seeing pretty flowers, fields of black-necked stilts, meeting other diabetic riders and people who were riding for family members. It was nice being able to pull out my testing meter and not feel like a freak at the rest stops.

The official numbers aren't in yet, but so far the utah ride has made over $406,000.00 for the american diabetes association. Last year, 17 million was made from all the tours across the states for this fight to cure diabetes.

Here are links to tour pictures.
I don't know how the bib numbers were assigned, but it is so cool that my number, 511, is a combo of my favorite number(5) and wt's(11) favorite number!

Well, I am not going to sell my bike and dw and I have signed up for another ride in september. It is a rolling 70 miler in moab to benefit livestrong and the moab cancer center. If you've ever been to moab, you know it is a beautiful place in the middle of nowhere. It is great that they have a place there for cancer patients to get treatment so that they don't have to drive hundreds of miles for radiation and chemo. We are looking forward to amazing views and riding for another great cause. Hoping for great weather and small hills!

Tuesday, June 15, 2010

vote for FORCE

Hi everyone, I have survived my wild bike ride over the weekend and will post about it soon. Just waiting a bit for the official photos to be published and hear how much we raised so I can include them in the details.  Below is a post by Teri Smieja from her blog Teri's Blip in the Universe. Please take a moment to read through it and vote for force as your favorite charity. FORCE has been an important part of my journey with brca and is an excellent resource for mutants like myself and also plays a role in awareness, legislation and the like.

By Teri:
If you had a chance to easily help Facing Our Risk of Cancer Empowered (FORCE) win $250,000, would you do it?
If like me, your answer is yes, then here is your chance. It won’t cost you a dime. All it takes is being a member of Facebook, and a vote for Facing Our Risk of Cancer Empowered as your favorite charity.
A campaign on Facebook called Chase Community Giving is going to be giving away a total of $5 million dollars to be split between 200 charities. The charity with the most votes will receive $250K, 4 runner-ups will receive $100K, and 195 charities will receive $20K.
FORCE is the only national nonprofit organization dedicated to serving the needs of and improving the lives of individuals and families affected by hereditary breast and ovarian cancer. They provide lifesaving information on the latest medical treatment and risk management, resources, and awareness.
Voting on Facebook starts on June 15, 2010 and the lucky 200 winning charities will be announced on July 13, 2010
What would FORCE do with the money if they won?
For starters:
$1,000 delivers the latest in BRCA research and information to 500 families.
$500 gives 60,000 visitors access to their website for one month.
$300 provides a scholarship to FORCE’s annual conference to one person that could not otherwise attend.
$200 provides life-saving information to 100 people through their newsletter.
$100 provides phone-based support and resources via the Helpline for one month.
$50 provides a package of informational brochures to doctor’s offices and hospitals.
Just think – if $2250 can do all of that – how much good could be done even if we only place among the bottom 195, and win the lowest amount of $20,000! That’s a whole lot of help, to a whole lot of people!
You may be asking yourself, “Why is this important?” For me, it’s obvious. As someone who has a BRCA genetic mutation, having an organization like FORCE on my side is invaluable. Without information and knowledge of what these genetic mutations mean, people can and DO die from hereditary breast and ovarian cancer.
Spreading information saves lives, and provides much needed peace of mind, education, and emotional support for those of us afflicted with this mutation.
If you are on Facebook then it’s very simple to vote. The first thing you do is go here:
The next step is to join the movement by scrolling down just a little bit on the page and clicking the ‘Like’ button.
Next step: Click the big green ‘Search’ button and copy this text: Facing Our Risk of Cancer Empowered and paste it in the box that says ‘Charity Name.’
Click the big blue ‘Search’ button to the right of that.
After you click that, you’ll see Facing Our Risk of Cancer Empowered in blue lettering. Click it.
Scroll down and check the box that says: “Please display my name and profile picture below so this charity knows it can contact me to get more involved.”
Click ‘submit’. A ‘Request for Permission’ box will pop up. Click ‘Allow’.
Vote – and share (and share and share and share again) with your friends, and ask them to share with their friends, and so on. This is the key to getting the word out there, especially as we are only allowed one vote per person per charity.
* Reminder: While voting doesn’t begin until June 15th, you can go to the Chase Community Givingpage on Facebook and ‘like’ them at any time- just to give yourself a head-start.*

Special Note to Bloggers:
Would you dedicate one of your blog entries between the time-frame of June 15 through July 10 to this cause? As a blogger, you already have a voice, this is a great time for you to use it. It would mean so much, to thousands of people who are at high risk of hereditary breast and ovarian cancer. And hey, if you also ask your readers to dedicate just one blog entry to this cause, then that’s even more people we could reach.
Special Note to Facebook Users:
Would you be kind and dedicate a few of your status updates between the time frame of June 15 through July 12 to this cause? It doesn’t take much, just a few minutes of time, to help a very worthwhile cause. If you could ask your friends to vote for us too, then that would be awesome, and a great way of helping to spread the word about a very easy way to help a terrific charity win a whole lot of money.
Special Note to those who use Twitter:
Would you be a doll and tweet about this between the dates of June 15 through July 12, to help spread the word? I know you are limited to a certain number of characters in Twitter, so the shortlink to get to FORCE on the Chase Community Giving page on Facebook is: http://bit.ly/b2vDpb. Asking others to retweet it would be wonderful too. To make it really easy for you, all you have to do is copy and paste this in your Twitter What’s Happening update box: I just supported Force Facing Our Risk Of Cancer Empowered (FORCE) on Chase Community Giving! #chasegiving http://bit.ly/b2vDpb.
The more people that help pitch in to vote and spread the word, the better the chance that we have making it in the top 200 – and that is our goal!
Thank you so much for your time and your assistance!
If you have any questions about this, or have an idea of how to help me spread the word, please contact me either via this blog, or email. Thank you!

To this end, FORCE has eight mission objectives:
• To provide women with resources to determine whether they are at high risk for breast and ovarian cancer due to genetic predisposition, family history, or other factors.
• To provide information about options for managing and living with these risk factors.
• To provide support for women as they pursue these options.
• To provide support for families facing these risks.
• To raise awareness of hereditary breast and ovarian cancer.
• To represent the concerns and interests of our high-risk constituency to the cancer advocacy community, the scientific and medical community, the legislative community, and the general public.
• To promote research specific to hereditary cancer.
• To reduce disparities among under-served populations by promoting access to information, resources and clinical trials specific to hereditary breast and ovarian cancer.

Thursday, June 10, 2010

gu, my best and worst friend

You have to love modern technology. GU wasn't around when wt and I were kids. Wondertwin used to carry around a baggie full of sugarcubes to counteract any emergency blood sugar lows. I carried little tubes of cake frosting. These days, things are much simpler with things like gu, honey stingers, clif shots and other energy gels. They are small and light and easy to slip into any bag or the pocket of your gym shorts or even tucked into your crew sock if necessary. They don't need refrigeration, don't get stale and are pretty durable. Yes, you can puncture them if poked with something sharp, like my dog's teeth, but usually they hold up to abuse pretty well.

I just packed up six gels to bring with me on my century bike ride this weekend. And as I packed them, my stomach turned a bit. Problem with the gels is that they are kind of disgusting. The taste is ok but I find the consistency rather gross. But they do work so well! I'd have to drink a whole bottle of most energy drinks to get the same amount of carbs into my body as one little gel, plus the gel raises my blood sugar quicker and doesn't leave me feeling bloated. I do really like the honey stinger fruit chews but they are too bulky to carry on such a long ride especially since I need to bring extra tubes, my raincoat and all my blood testing supplies. My goal on saturday is to make it to each rest stop with a decent enough blood sugar to not need a gel and be able to rely on normal food like bananas and bread and peanut butter instead. That is the tricky part. I am not too worried about my legs. I think they will fare the best. My concerns are my blood sugars, my butt (oh, it will be sore even with padded shorts) and my hands. My hands tend to fall asleep, especially the right one when I'm biking. I've been doing so much riding that now it falls asleep even when I'm not on the bike. I can just see myself driving home from the event bonking from low blood sugar, with a bleeding hemorrhoid (got my first a couple of weeks ago) and losing control of the wheel because my hands are asleep. Just kidding, I will sleep in the parking lot if I have to! But seriously folks, it is a fun sport and once I get over my nerves, I will have the ride of my life:)

Tuesday, June 8, 2010

recharging the batteries

Ups and downs, good days and bad days, tears and laughter...that is the game of life. The last 11 months have indeed been quite the game to try and play. Probably the worst period in my life since my mom succumbed to the big C. Last Fall, I spent most of my time researching brca and breast cancer for hours on end. The rest of my time was spent crying and walking around in a fog. I was pretty depressed. I remember meeting my gi doc to discuss getting a colonoscopy. She picked up on my gloom and thought it was because I didn't want to get one but when I said I had already scheduled it she said oh, it must be the whole brca thing I was upset about. I have been lucky in that aspect: not only do all my doctors know what brca is, they also understand it is an emotional, difficult journey. So here I sit, almost a year after it all started. Just saw my bc social worker last week for a chat and we both agree that I am in a much better place now. I still have some fears and moments of sadness, but I have rejoined society and am being productive and making plans for the future. Like I said in my last post, life goes on.

How did I make it through this year? My wife was a big part of that, always there for me even if I tried to push her away, giving me hugs when I needed them and an occasional kick in the butt when I needed that as well! My family and my friends were there with their love and support and willingness to distract me with fun things to do. Music and the gym. I was unemployed the majority of the year and with dw off at work I had to find things to distract myself. I often went to the gym twice a day and had music on most waking moments. That was key for me. Exercise and sports have always been a part of my life. Not only do I love the physical aspect but it seems to do wonders for my mental state. And then winter came. Anyone reading this blog on a regular basis knows I love snow! I also love nature and getting out there and snowboarding really helped heal me. I think it even held off depression after my hyst/ooph as I was able to go three more times after surgery and one was a powder day-the best one I've had in years. I vow to take advantage of more powder days next year!

Winter is over but the fun doesn't stop. I've taken up a new sport, road biking. It started with the simple act of signing up for the tour de cure. Then I joined a team to ride with in the event and I started riding with them on sundays. I dragged dw with me on our mountain bikes and within a week or two we went out and purchased road bikes. It is a different world than mountain biking. Tight clothes, light bikes and fast rides. And it is a huge fundraising sport. Every weekend in the spring/summer offers up at least one opportunity to ride for a cause. My team has already participated in a ride for bikes for underprivileged kids and one for cancer research and has two big rides coming up for diabetes and ms. I'm not going to give up the mt bike because that is a rush in a different way. I love biking partly because you can cover so much more ground than hiking which gives you the opportunity to see more. But as a woman in menopause, it does not help out my bones because it is a non-weight bearing exercise. I will have to get off the saddle once in awhile and keep lifting weights and do a little running. I'd love to get back into the swing of tennis as well. That is such a fun sport that does wonders for your body without you even realizing that you are "exercising" for those of you that don't really like that word!

I was feeling a little funky and down what with wondertwin's pbm. It is hard to go through all this crap, but even harder to watch someone you love go through it. I'm snapping out of it though. Hard not to after seeing my sisters, then a camping trip with my sis-in-law and her hubby and a visit from some friends. And lots of biking of course, with my big ride coming up this weekend. And wondertwin went back to work yesterday. The game of life...bring it on!