9.5 miles!!!

My blog update is waaaaaaaaaaay too long in coming. This past Saturday, the group ran 9.5 miles; my longest run to date! By about mile 7, my legs felt like lead, but I knew because of what my friends have been through with different kinds of cancers, I couldn’t quit! They can’t quit, so what gives me the right to even think that way? They are going through (or have gone through) much more physically challenging times than a measly 9.5-mile run that was partially run in the rain.

Here’s an update on Lula (9 years old). These updates are from Lula’s 

The picture on the left is Lula and a therapy dog. She is having her chemo treatment as I'm typing this.

Monday, 11/26/12

“UPDATE: The scans today revealed that things have grown - but not like crazy. It's good news in a couple of ways - it didn't take over her lungs in the few weeks off of chemo & we know that we have to press on. So, the girl started chemo (again, with a different drug) today. She'll have 5 days in a row of chemo - but we get to do it in the clinic, instead of in the hospital. And again the following week. 3rd week, we head for a day trip to SLC to meet the bone marrow team. Then, scans on the 14th or 17th. If they show shrinkage from today's scans we will press into another round of chemo, followed by a trip to SLC sometime right around the beginning of the new year. Stem cell harvesting, chemo & bone marrow transplant. 2 wks in isolation in the hospital. At least 2 months in SLC (or within an hour distance to the hospital) and then, home.

That makes sense, right?”

11/28/12

“UPDATE: We're off for more chemo this morning - JoyBubble is feeling good and sassy, rocking out to Pink's new song, TRY. It's meaning a lot to us, these days:

Where there is desire, there is gonna be a flame.

Where there is a flame, someone's bound to get burned.

But just because it burns, doesn't mean you're gonna die -

You gotta get up and TRY!

Lu and I have talked about our desire to get rid of this cancer... sometimes it burns - the chemo, the surgeries, the disappointments. But just because we're hurting doesn't mean it's over - we have to keep trying!

Love you peoples. Have a really great day.”

If you have considered donating, but haven’t done it yet, please know that it’s not too late, and that I am still raising funds to find treatments and ultimately a cure for cancer.  Please go to my secure fundraising website to donate and let’s find a cure!

http://pages.teamintraining.org/vtnt/tinkerb13/jkdowner

If you don’t feel comfortable donating through my blog site, please feel free to make your checks payable to the Leukemia & Lymphoma Society and mail them to me.

Also follow our training progress on my blog: 

www.pedalchik.blogspot.com

Did you know that:

•               A gift of $150 will fund a Leukemia & Lymphoma Society researcher for one day

•               A gift of $500 will allow The Leukemia & Lymphoma Society to reimburse one patient for medical expenses for a year through our Patient Financial Assistance program

A gift of $1,000 will fund a patient education program on topics such as coping with chemotherapy and healthy cancer survivorship

Thank you for your consideration.

Julie

PS. Lula is facing a bone marrow transplant at the beginning of 2013. There is going to be a benefit concert for her on December 15^th. If you would like information about giving, please send me an email.

Thank you.

Update

Friday, October 26, 2012

Hi, Friends, and happy Friday!

This weekend, I am participating in “The Color Run”, a 5K event that promises to be fun and extremely colorful. They say that in order to keep the color from staying in your hair, you are supposed to “oil up”, using coconut or olive oil.  I’m tempted to see how long the free dye job will last.

Then, on Sunday, a couple of amazing friends are supporting me by running 6.5 miles with me, since I won’t be able to run with my normal group on Saturday.

Speaking of support, if you haven’t made a donation to the Leukemia and Lymphoma Society (LLS), I invite you to do that by going to my secure fundraising website:

My fundraising Page

Or, if you prefer, write a check to Leukemia and Lymphoma Society (or LLS) and send me an email for my mailing address.

 If you have already donated, THANK YOU! 

Did you know that LLS helped advance Velcade® for myeloma and lymphoma patients; It is being tested for patients with cancers as diverse as lung, brain, breast, colon and prostate cancers.

Oh, there you are!

Do I really look that different dressed for athletics vs dressed for every day, or with my sunglasses on vs. off?

I’ve had three people say that to me over the course of two days.  They saw me in my work clothes with my hair not in a ponytail and didn’t recognize me.  Only when I pulled my hair back into a mock ponytail did they say, “Oh, there you are!” Not sure if that is a good thing or bad thing, but I have to admit, I’ve been guilty of thinking the same thing during my cycling seasons.

I’ve heard people tell stories of training for triathlons together, specifically the swim. Then when they see each other out on the street, not recognizing each other, or saying, “I’ve never seen you with your clothes on!” (Awkward or shocking to those observers close by, but funny at the same time.)

I walked into this training with the mindset that I did NOT like running.  After reading the book “Born to Run,” By Christopher McDougall, my attitude towards running began to change.  I am not completely sure why, but it did.  Once I started running with a group of people, I really started to see a difference in my thoughts of running.  In fact, one day, several hours after my first 5 mile run in over a year, I was driving home after running some errands and thought, “I want to go for a run when I get home,” then remembered that I had already put in 5 miles that day. That was when I realized that I am no longer only a cyclist. I am also a runner.

To date, my longest run is 7 miles. This next Saturday, I’ll be running in a 10K event called Barber to Boise, partly because that is what some of the folks in my group were training for, also because I want to experience a running event before I get to my half-marathon in January.   I am looking forward to it!

As mentioned above, I am fundraising for the half marathon. It takes place on January 20^th, in Anaheim, CA and is called the Tinker Bell half marathon. Funds raised will go to the Leukemia & Lymphoma Society and will be put towards research for treatments and a cure and for financial aid for patients.

Did you know that:

•                A gift of $150 will fund a Leukemia & Lymphoma Society researcher for one day

•                A gift of $500 will allow The Leukemia & Lymphoma Society to reimburse one patient for medical expenses for a year through our Patient Financial Assistance program

•                A gift of $1,000 will fund a patient education program on topics such as coping with chemotherapy and healthy cancer survivorship

You can donate by clicking on the link above or going to my fundraising website:

http://pages.teamintraining.org/vtnt/tinkerb13/jkdowner  

This is a secure website to donate to the LLS. If you aren’t comfortable donating on this secure site on line, please write a check to LLS  (Leukemia & Lymphoma Society) and send me an email for my mailing address.

I am running in memory of:

Phyllis, Isaiah, Dale, Peter, and Nathan.

I am running in honor of:

Randall, Bill ,Byron, Lindsey, Lindsey, Lula, Kacey, Dan and Mike

Thank you so much for your consideration!

Julie

Running: September 3, 2012

Who’da thunk?  

I have been swearing up and down that I hate running, but I guess I just hated the thought.  I have been running with a group of people who are amazing! Some of them are new to the sport, like me. Some have run marathons, and some are somewhere in the middle.  Some are super duper fast, and some  are not so super duper fast. We have all been divided into pace groups, and, having mentored the June cycle team, I was asked to be a pace leader. My first thoughts were, “But I don’t even run! I don’t know what my pace even is! Do I even know how to run???”  Even with the nagging questions, I decided to say yes. I am glad I did.  I love the pace group participants that I am with.

This is Bill. He has CLL (the same disease
that Phyllis passed away from).  Thankfully,
he is in remission.

This last Saturday we ran 6.26 miles. That makes a total of 57.42 (+) recorded miles purposefully run or walked since July 7^th!

I am running in memory of:

Phyllis, Isaiah, and Dale

I am running in honor of:

Randall, Bill, Byron, Lindsay, Lula, Kacey, Dan, & Mike

I invite you to partner with me and donate to the Leukemia & Lymphoma Society, and help me towards my fundraising goal.  Please go to the following website to make your donation, or contact me if you don’t feel comfortable with making a donation on line.

http://pages.teamintraining.org/vtnt/tinkerb13/jkdowner

Thank you so much for your consideration!

Sincerely,

Julie

Tinkerbell Half Marathon Adventure

How serious is blood cancer? Every four minutes, someone new is diagnosed with blood cancer. Every 10 minutes, someone dies.

 

Four and a half years ago, I went to Phoenix, AZ to cheer my friend on as she ran the Rock and Roll marathon in memory of her mom.  Rewind a few months from that marathon.

 

My friend asked me if I would go to a Team in Training (TNT) Kickoff meeting with her and sign up to run marathon with her.  I said, “Um. I’ll go to the kick off with you, but no, I won’t run.  I WILL cheer you on and support you however you need me to.”  My friend had given me a brief synopsis of what TNT is and stands for. 

 

The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health agency dedicated to blood cancer. Its mission is to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world and provides free information and support services. Team In Training (TNT) has grown to be the world’s largest and most successful endurance sports charity training program. Since its inception in 1988, TNT has prepared more than 500,000 people to complete a marathon, half marathon, triathlon, 100-mile (century) cycle ride or hike adventure. Those participants have raised a remarkable $1 billion to support blood cancer research and patient services.

 

My friend was drawn to TNT because her Mom had been fighting a form of blood cancer for 3 years.  One week after she started training for her marathon, her Mom passed away.

 

While my friend was training, I called on her long run days and cheered her on.  I went out along some of her long run routes to jump and cheer and hug her.  One day, I think it was on her 19 mile run, I found her and we talked for a few minutes.  Her coach came up to me and said, “When are you going to do a marathon?”  I said, “Um, ne-ver.” He said, “Well, TNT also does triathlons and century rides.” I said that I wasn’t so sure about my knees and back (I’ve had a few issues with them in the past).  He responded and said, “Thanks for being a cheerleader!”

 

Well, as the old saying goes, “Never say never!!!” In 2010, I signed up to do a century ride (100 mile bicycle ride) around Lake Tahoe. I fundraised and the event took place in 2011.  For the 2012 season, I was asked to be a mentor to the cycle team. I decided to be a non-fundraising mentor. This was a fabulous experience, and you bet! I’ll do it again if asked! Together the entire TNT team (throughout the US who participated in this event-I believe 3,000 people) raised $5,000,000 (yes Five Million dollars)!

 

Did you know that:

•                A gift of $150 will fund a Leukemia & Lymphoma Society researcher for one day

•                A gift of $500 will allow The Leukemia & Lymphoma Society to reimburse one patient for medical expenses for a year through our Patient Financial Assistance program

•                A gift of $1,000 will fund a patient education program on topics such as coping with chemotherapy and healthy cancer survivorship

 

Which leads me to my next adventure.  As I said, “Never say never.”  I have decided to raise funds and run a half marathon with TNT.

 

Here’s where you come in.  Would you please become part of my team by taking just a moment to write a check to LLS or make an online donation at my fundraising website?

 

·       Initial fundraising deadline of $3,550.00: October 19, 2012

·       Tinker Bell Half Marathon:  January 20th, 2013

·       My Fundraising Website:

http://pages.teamintraining.org/vtnt/tinkerb13/jkdowner

·       Make checks payable to LLS (or Leukemia and Lymphoma Society) and email me for my mailing address

·       Follow my blog: www.pedalchik.blogspot.com

 

Because of Team in Training fundraisers, one of my friends has a treatment for his form of Hodgkin’s Lymphoma. When he was diagnosed, there was no treatment.  This gives me hope for other friends that I have who are currently fighting, but their form of blood cancers do not have a treatment yet.

 

It seems there are few people whose lives have not been touched by cancer in some way. If you have a loved one who has battled leukemia or some other form of cancer, please send me that person’s name and story along with a picture. I will run in his or her honor and, with your permission, post the story on my blog. In addition, I will pin your loved one’s picture on my back while I complete my half marathon in January.

 

Thank you for partnering with me as I partner with TNT and LLS.

                                                                                                                                                                                                                                              

 

                                        

Motivation

It is 5:00 on Saturday morning, and the last thing I want to do is get up. I hit the snooze on my alarm and roll over.  The blissful 9 minutes are much too short, so I hit the snooze one more time. While I’m waiting for the 9 minutes to tick by, I’m hearing ducks in the canal, quacking, ducklings peeping, birds are chirping, cars are whirring-already starting to make their way down the street about a block away from my house, crickets are cricketing, oh, and there’s the mourning dove-one of my favorites. The alarm goes off again and I roll over to look at my phone. Still dreaming about the place between sleep and awake, an email catches my eye. 

The email is from a lady who rode in America’s Most Beautiful Bike Ride with Team in Training the year before my first experience.  She rode again this year, not with TNT, but with her sister who was riding with TNT.  Here’s what the email said:

Your Goldilocks ticket is going out in the mail tomorrow.  I also enclosed a check from a friend who wanted to help LLS when she found I was doing Tahoe again. I asked if I could give her donation to you for your marathon, and she was happy to help out.  Please accept this donation on behalf of her father who passed away from cancer.  Thanks!

Blessings,

M

Thanks, M and friend. Just the motivation I needed to get out of bed and go for a run this morning.  See ya on the road. 

Infusion 4 – Reactions Galore, but Back for More. - The Mike Sessions by Chad Estes

Here is the latest on the The Mike Sessions by Chad Estes.  To read more by Chad, please Click Here.

Infusion 4 – Reactions Galore, but Back for More. - The Mike Sessions Posted: 05 Jun 2012 10:12 AM PDT When I got to the emergency room on Friday I already knew that Mike’s face was swollen up like Will Smith’s in the movie Hitch. Unlike the movie there was nothing funny about the allergic reaction that he had been suffering from for the past 24 hours and that he would suffer from for the next 48. It was hard to tell exactly what he was reacting too. The chemo from the previous session should have been out of his system for almost a week at that point. He hadn’t eaten anything different from his dietary regimen of the past six weeks of treatment. There were no indications that he had been bit or stung by anything, but boy was his body reacting to some toxin in his system. He was irritable with the irritation. I could hear it in his voice on the phone over the weekend. It was very unlike Mike, who was struggling to get any rest or relief. I was pretty convinced that Monday’s scheduled chemo treatment would be set aside. But when I showed up at the hospital on Monday Mike was back to his old, congenial, un-swollen self. Whether the steroids and antihistamines finally kicked in or whether it was his antioxidant vitamins that rallied his body nobody was sure (but everybody had an opinion). “No, this isn’t normal,” the doctor told him. “Yes, it is within the realm of possibilities,” he continued. “We just don’t have any data for that,” he excused. “Let’s just hope it doesn’t happen again, he finished, giving Mike a couple of prescriptions in case it actually did. It can be frustrating when you meet with the medical experts and they don’t have any more answers for you then when you arrived in their office. At least he was honest. And then Mike moved from the consultation room to infusion room 11. If there was a time to quit, it could have been now. No one, especially those who saw him over the weekend would have blamed him. Instead Mike did another course and instead of being 1/4 finished is now 1/3 of the way complete. He and the other patients I saw in the dozen treatment bays are fighters. They are fighting for their lives, for their health, and for their families. This is a scheduled 12 round bout. Mike may have lost on the score cards in round 3, but he is already way ahead in round 4. P.S. I will be out of town in a couple of weeks for Round 5. If you show up to cheer on Mike from his corner, please take his picture for me and make him laugh. P.P.S. Dress as a Ring Girl.

Sunday's Adventure

As one of my teammates kids puts it, "1 more sleep" until we start the end of this adventure called America's Most Beautiful Bike Ride. If you are curious about what this ride looks like, Click here to see the Map.  Click here to see the Elevation Map. If you print out the elevation map, you can put that beside the Map and see what mile marker goes with which climb or downhill. FUN STUFF!

I came across this music video on a friend's FaceBook page and just had to include it in this post for remembering the reason that I have trained and will ride with a fabulous team.  

What doesn't kill you makes you stronger.

I am riding in honor of:

Audrey

Byron

Lula

Lyndsay

"M"

"D"
Mike

Randal

Peter

I am riding in memory of:

Phyllis

Isaiah

Dale

Infusion 3: Cactus Butt: The Mike Sessions by Chad Estes

As I'm thinking about this upcoming weekend, I'm remembering that I have it so easy.  I only have to ride my bike 100 miles.  At the end of it, I will be tired, sore, and hungry, but I won't have "Cactus Butt".  Here's what Chad Estes says regarding Mike's 3rd infusion.  To read more by Chad Estes, Please click here.:

Three chemo sessions out of twelve are finished. One quarter of the chemical concoctions have been drunk drip by drip into Mike’s blood stream. Listening to his doctor things are right on target with blood counts, organ functions, and overall expectations. With Mike the side effects seem pretty manageable and he has a great team of professionals, including his family, making sure he is getting the proper rest and diet that he needs.

I’m not sure why I’m at Mike’s side for these sessions, other than I want to be. I can pretend to be important as a caregiver but it would be stretching the truth to make myself seem more important than I am. I am there because it is good, and that is enough.

Cancer wards are worth hanging out in if you want to see the best part of people. I’m consistently amazed that I’ve found no pity in the eyes that greet me in the waiting room and in the elevator. These people are fighting for their lives and fighting hard.

I watched one man gingerly make his way to the nurses’ station where he was greeted by his first name and with a big smile. As he walked over near me he took the doughnut shaped pillow he was holding and positioned it carefully in the chair. He lowered himself ever so lightly onto the cushion with a few grimaces from his backside pain. As soon as he was comfortable his smile returned as did his conversation with those around him. It’s kind of hard to hide what kind of cancer you are fighting when you walk around with your doughnut pillow.

Another man walked into the room from having just completed his blood work and recognized a friend in the room. He communicated his greeting with his facial expressions and lots of hand gestures before he opened his mouth. When he did so his voice was extremely deep and raspy. “Esophageal cancer,” he explained in a voice so low that James Earl Jones would be considered a tenor in comparison. The men’s two wives picked up the conversation at that point, which was probably a pretty normal occurrence anyways.

I watched Mike go through his own discomfort yesterday. As he was getting one of the anti-nausea medications injected into his port his face started twitching and he raised himself up out of the chair, obviously feeling something very uncomfortable. The nurse responded immediately and slowed down the injection which helped the reaction subside. She told us later that the nurses call that reaction to the drug “cactus butt.” She also added that most people only feel it in their derriere and that it was strange that Mike felt it in his cranium.

“It isn’t strange at all”, I announced. “Mike, pull your head out! Quit being such a butthead!”

We all laughed, which I think is what I’m good for. Laughter is supposed to be the best medicine and maybe it cushions the chemicals being injected into his port.

One quarter of the chemo game is in the books.

Julie here.  After Infusion 3 happened, Mike posted this on his FB page:  "
*ow* prickly chemo fingers *ow* hurts *ow* to type *ow* but I just *ow* can't seem to *ow* stop"

Infusion 2: The Mike Sessions, by Chad Estes

I am about 2 weeks behind in sharing Chad's post about Mike.  Here is Infusion 2.  To read more by Chad, please Click here.

Cancers are not ever good, but I guess some can be better to have than others. Where Mike’s chemo treatment is more like an insurance policy to make sure all the margins around his removed tumor are healthy other people are taking chemo to shrink tumors that are still in their body. I looked around the waiting room of people wondering why everyone was there. Each of them has a unique story and is pursuing a journey of recovery as best as they and their doctors can figure out.

Mike looks really good. His color is better; his blood count is better; his wavy hair will probably stay attached to his thick skull. Others in the room don’t look so good and their stories read like Stephen King novels where you pray for your favorite characters to survive.

The story Mike was most interested in yesterday wasn’t his own. While he sat at one end of Boise getting chemicals pumped into him, a sweet child that was named after him was in the hospital across town having an operation on her liver. Her cancer and her treatments make everyone that have heard the details feel heavy. It makes Mike call his own infusions “chemo lite.”

We always laugh when we are together, but there was tension yesterday too. Mike held up the tube running into his body and said that he felt like he was tethered to the chair when all he really wanted to do was get up and go to the other hospital and sit at that family’s side. His ever present smile faded and his bright eyes brimmed with tears feeling not his own suffering but that of Michaella’s. He didn’t have his head bowed or his eyes closed, but I recognized his posture as one of prayer. I didn’t raise my camera to catch the emotion because it felt holy; so we just waited there.

When the drops stopped falling the tether was removed and Mike quickly got himself across town. He was running down the hallway as they were pushing Michaella into her room. She was free of the ventilator and already asking if she could eat. Better yet the surgeons were giddy. They only had to remove 10% of her liver when they had planned on up to 50%. And if the lab results are favorable the two lung surgeries she had scheduled for this week won’t need to happen either.

By the end of the night Mike was spent. He sat in my living room surrounded by his friends drinking up other stories of God’s beauty, and occasionally feeding us a morsel of truth to chew on.

It was a good day of communion, infused with grace.

Yesterday (May 7) was round two of chemo for Mike.

Infusion 1, The Mike Sessions by Chad Estes

My friend, Chad Estes, has a wonderful way with words.  He writes about a mutual friend who is going through Chemotherapy. This is only one reason why I ride my bike:

My friend, whom I’ll call “Mike,” started chemotherapy today.

It is a bit intimidating walking into a building where you know that all the patients are there to get a course of toxic medicine. This stuff is pretty ugly – harsh, killer chemicals that hunt down and destroy even uglier and deadly cancer cells. It is like unleashing a team of mercenaries that care more about destruction that justice. Sometimes they inadvertently, yet without remorse, take out the good guys like hair follicles, appetite and stomach serenity.

You truly don’t want to call in the chemo team to do their business unless the therapy they mean to deploy is absolutely necessary. In Mike’s case he and his wife have decided it is and so today they started out on a new path of their journey.

My job, whatever that seems to be today, is easily put on hold so that I can go to the hospital and sit by Mike’s side as the mercenaries are inserted a drip at a time. It will take five full hours in the hospital, every other week. I plan to be beside him as much as is possible.

I’m not a saint.

This isn’t a sacrifice.

There are people, much nobler than I, who have the patience to sit with patients. I had to admit to Mike today that as much as I’d like him to think that I was there for him I knew he didn’t really need me to be there. The hospital put a rolling shelf of movies within arms’ reach of him, possibly being tipped off how much he likes the cinema. I know he has a Kindle, and with his love of books five uninterrupted hours of reading could feel like heaven to him.

But five uninterrupted hours with Mike sounds like heaven to me. So I got the hospital to print me off a schedule of his treatments and I sat beside him like I was HIPA endorsed family. I asked questions of his doctor, interacted with his nurses and pharmacists, and made myself at home. I had decided that if questioned I would tell them I was his brother. “You’re a Freeman?” they would ask to which I could honestly with my hand on the Bible answer, “Yes, I too am a free man!”

Here is the payoff – normally I get an hour or two with Mike each month; now I’ll get at least 10 for the next half year. And you need to pray for Mike because I’m not always the most sensitive guy in the hospital. Last time I spent the night with him in this place he told me his incision only hurt when he laughed. Of course I kept him stitches half the night.

Yes, there are evil things that are dying a slow death inside of Mike right now, but there are also new infusions of life and love that I see in him each day, and so as long as I know he is tethered to a chair I am selfishly going to strap myself down right next to him.

For more from Chad, please visit his site at:  http://www.chadestes.com/