The Long Week

Monday:

I was scheduled for surgery at 7:30am.  I was one of the first patients to arrive but the last to go in for my operation.  There was a miscommunication with the anesthesiologist who didn't show up so we had to wait.  It was a good thing because one of my best buddies was running late and this allowed him to see me as my "brother."

 

I had to get an IV in my left leg (the bad one) in order to administer the medicine that knocks you out because the veins in my arms were not suitable.  They are extremely messed up from the radiation and the hundreds of IV's that have already been stuck in me.

 

When I woke up, Courtney was standing over me asking me how I was doing.  I was so tired, but happy to see his face.  Then two by two my family and friends came in to see me before they had to leave.  The surgery took almost eight hours.  I kept trying to pull up my gown to show everyone my incisions but they were covered with bandages.  I could hear Kacey and my mother-in-law Denise laugh at me because they knew I was proud of my scars!

 

Eventually I was taken to my room . . . I couldn't believe it, I was back in 13 long.  This is the floor that I recovered in the last two surgeries and I was stoked to be back with the 42inch plasma televisions.  That is all I was hoping for (next to being able to pee on my own when I woke up.)  I slept for the rest of the evening.

 

Tuesday:

Early in the morning the doctors and interns made their rounds.  They came to see how I was doing and let me know the procedure was successful.  Dr. Stoller was very happy because the kidney fired up right away.  This is a good thing he said.  He then informed me that Thursday they would take out the catheter and see how it goes.  He advised me to get out of bed and start walking.  I looked at him and said "Maybe tomorrow."  He looked at me with his eyebrows scrunched together as I explained walking with my walker would require more of my abdominals and I am in too much pain.  He then said fine but you need to get up and walk tomorrow.  I promised I would and then they all left to continue their rounds.  The rest of the day was spent watching T.V. and sleeping.  I was in a lot of pain when I tried to move and my stomach was starting to swell.  That night I prayed the pain would get better and that I would get out of the hospital soon.

 

Wednesday:

I got up with Courtney's help but when I tried to walk with the walker the IV in my left wrist was sticking me.  I couldn't put pressure on that hand making it difficult to take a step.  Finally we called in the nurse and had her remove the IV.  It was so much better and I was able to walk a short lap around the hospital floor.  About four hours later I walked a full lap and that evening I walked another full lap.  It was incredibly painful and hard to walk but I knew it had to be done.

 

At some point my catheter got a kink in it and my stomach started to become distended.  It was becoming increasingly painful.  The PCA came in and started to move the bag around until it allowed my bladder to drain.  I thought my stomach was going to split open where they super glued my incisions.

 

Thursday:

The doctors removed my catheter and an hour later I began to pee on my own.  It was great . . . no more drain in my back and no more catheter.  I felt so free!  I decided I wanted to shower, so Courtney helped me clean up.  It felt good to finally have water run down my back.

 

I walked two laps in the morning and in the afternoon.  I was hunched over like an old person and I was shuffling my feet but I had to walk.  The gas pains were getting worse.  My stomach was getting bigger and bigger and I wasn't getting any relief.  I knew it was a matter of time but it was so painful.  It felt like the gas was pushing on my incisions trying to escape that way instead of the proper way!

 

Friday:

Still no passing of gas so more walking.  Two laps in the morning and two laps in the afternoon.  Why wasn't it leaving my body?  I could feel it moving all around inside me but it just wasn't escaping.  I walked two more laps in the evening and tried to sit for awhile but still nothing.  Finally I broke down and took the suppository.  It was horrible.  Things should not go in only out in that area.  It actually helped.  I was able to pass a little gas but that was it.  I couldn't leave the hospital until I could keep solid food down and have a bowl movement.  Great, when was that going to happen?

 

Saturday:

I continued to walk and explore different parts of the hospital.  As I walked with Courtney I told him I didn't think all of this was making me stronger.  I felt like I was already strong and that is how I was surviving.  Instead, all of this was making me more ornery, stubborn and feisty!  He laughed and so did I!

 

We watched all sorts of movies on cable getting up to walk during commercials.  Still no further progress but I was on solid foods!  Yeah!  Pastor Dan stopped by to say Hi and bring Courtney food from McDonalds.  He got me some fires.  How delicious when you have been living on chicken broth and cranberry juice for five days.

 

I finally drank prune juice which was horrible.  I do not know how people drink that.  I was barely able to get three quarters down. Yikes!

 

Finally that night I started passing gas and had a bowl movement. "Yes, I get to go home tomorrow!"

 

Sunday:

In the morning the doctors came in to say they were going to keep me another day.  I opened up my eyes and said, "I pooed three times last night, I want to go home."  The doctors laughed and said OK we will get your discharge papers.

 

My stomach was still bloated and it felt like someone punched me in my gut but I wanted to go home.  When we left I walked out with my cane.  They tried to offer me a wheelchair but I wanted to walk out on my own.  I held Courtney's arm and off we went.  It was a long and slow walk to the parking garage but I did it.  As we left our bill was $160.  Thank goodness for my handicap parking pass because we parked for free.  Yippee! 

 

Now I am home trying to recover quickly.  I am so thankful everything turned out well.  I've been praying that it would.  God has continued to bless me.  The hospital bills are starting to roll in again since it is a new year.  Things are becoming increasingly tight once more but I know everything will work out.  We will begin selling a bunch of bikes, I am picking up more clients and doing more guest speaking.  Now that my final surgery is over I can prepare to launch my coaching site.  God is always there watching over me!

 

Powered By God,

Jamie  

 

 

still here!

Hello,
Jamie is doing well, we are still here at UCSF and hopeing we get to go home soon. The kidney transplant went like clockwork.As soon as Jamie's bowels fire up she should be on her way home. On a side note, anyone out there in the suspension industry we need some asstance with making a bike brace for Jamie. Thanks Courtney

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THIRD TIMES A CHARM

(At least I hope so!)

Here we go again.  In just a few hours I will be going under the knife for a third time.  This surgery is bittersweet.  I am very excited to get rid of this drain but worried the new placement of my kidney will not be very comfortable for my active life!

 

I have been traveling for the past few weeks race announcing and as a guest speaker.  The first as I mentioned before was in Michigan and it was a lot of fun.  I was then able to visit my uncle in Northern Alabama before heading to Pelham for the Xterra Southest Championship.  While I was visiting I was hit with the news about Steve Larsen.  At first I thought I wasn't reading my emails correctly.  Then I thought someone was playing a really cruel joke.  When I realized it was all true I was without words.  I sat down on the couch and just looked at my uncle.  Steve's passing brought up a lot of emotions about my uncle Ricky who passed away from a massive heart attack right in front of me 10years ago this August.  He was the twin brother of the uncle I was visiting.  I was very close to him. 

I then thought about the first time I ever raced in a mountain bike race.  It was a Norba National Championship race and I was in the beginner category.  It was only the third time I ever mountain biked.  I cried the entire time we prerode the course because it was so muddy and technical.  I went on to win the race but vowed not to ride again! (So much for that) I remember watching Steve Larsen race and thinking what an amazing athlete.  I followed his career hearing about how the Olympic committee wouldn't put him on the Olympic team because of a mechanical even though he was our best mountain biker.  He finished out the season capturing the Norba National Mountain bike title but he hung up his bike not wanting to ever race that sport again.  He then picked up road triathlons as his new career.  He attacked it with the same passion as every other sport he competed in from Road cycling to cyclocross.  It is no wonder I was excited to see him racing Xterra in 2004.  It was even better when I found out he had moved back to Davis which was only 20minutes from where I was living.  It was a chance for me to get to know him more personally.  We even shared the same sponsor.

After I won the Xterra USA Championship in 2004 he walked up and complimented me on my race uniform.  I was sporting a white uniform with red and blue stars.  I was very patriotic.  He lost that race to Conrad by 30seconds but he still captured the USA title.  He was proud to be an American and proud to represent his country.  I think that is what I admired the most about him!

When I made my way down to Pelham I knew we needed to do something to recognize such a great ambassador to our sport.  Before the race start, Conrad said a few things and then we had a moment of silence.  If you get the chance please visit www.rememberSteveLarsen.com.  He leaves behind a wife and 5 kids and a big legacy!

I ended up having a really great time in Alabama despite the sad news.  It was great to still be a part of Xterra.  I had so much fun announcing with Kalei. I was even updating my facebook on how the race was unfolding.

I then flew home for a couple days, went to a doctor's appointment then flew to Indiana.  I was asked to be a guest speaker for a race in Terre Haute and at a church.  I had the pleasure of a wonderful homestay at the race director's in-laws.  Paul and Judy were so much fun.  Courtney kept saying that Judy and I were two peas in a pod.  He couldn't believe how much we resembled each other.  We both ended up announcing the race and having a blast.  There was only one mic so Courtney did most of the announcing.  He kept running around so I couldn't catch him!  In the end we were asked to come back next year and I truly hope I get too!

During all of that I was fighting off a cold.  I needed to get well so they wouldn't cancel my surgery.  I have waited too long for this.  Thankfully due to lots of praying I am well enough!

I don't know what life is going to be like after this surgery.  I can only hope it is better than right now.  Every day that I go to the gym the handicapped parking is right in front of the pool.  I've had to watch people swimming every time I park for the last 6 months and I keep telling myself, "One day soon!"  It is enough to drive one crazy.  But ultimately I know my day will come soon and it will be work the wait.  Heck right now I just can't wait until I can stand underneath a shower nozzle and let the water pour all the way down my back.  No more standing with my head under as I shampoo and condition it.  Then I have to put one arm then the other and then wash my legs all the while trying to avoid getting the whole where my drain comes out wet.  It takes forever!

 

As I go into this next surgery I pray that all goes well.  I pray that I can still go to the bathroom on my own and that there is no further damage.  I also pray that the doctors can tuck my kidney in far enough that it doesn't really bother me.  I will be out for at least 8 hours so most of all I hope I wake up because you never know when it is going to be your time!

Powered By God,

Jamie

THE GOOD, THE BAD and THE SMALL THINGS

It has been awhile since I last updated my website.  I pretty much left everyone hanging for four weeks.  I apologize for that but things have just been weird.  Every time I sat down to type what is going on I just couldn't.  I have been through so much and things just seem to be . . . well what they are!

 

The Good:

 

After all the drama about moving my bladder it ended up not even being an option because there is just too much scar tissue in the area.  My oncologist told the urologists to stay away from that area.  Yes God does answer prayers!  So what are they going to do now?  They are going to auto transplant my kidney.  The doctors are going to remove my left kidney and pull it through an incision in my belly then the transplant team will put it back in my right pelvic area.  They estimate the surgery to be about 8hrs . . . but I know it may be longer then that.  This is a pretty good thing because I will finally get this stupid drain out of my kidney and I will be able to swim and attempt getting back on the bike.

 

The Bad:

 

When my kidney is placed back into my pelvic area it will bulge out.  I will have discomfort in a crouching position.  That means riding a road bike may no longer be an option.  My 30min core training may not be possible and flip turns in the pool may not be doable.  I know I have to give this a try because losing my kidney at my age could be a problem in the future but will this hinder the quality of life I want to continue to live?  The doctors tell me because I am so thin it will be more uncomfortable then the average person.  And to top things off I will have to wear a special kidney plate to protect it when I ride off road (and I will mountain bike again!)  I guess that means no contact sports ever again!

 

The Small Things:

 

With so many challenges that keep coming my way I have to remind myself about the small things.  Just 5 months ago my leg couldn't last more then 2 minutes in the elliptical trainer and now I can go for 1hr 30min or more.  I could barely walk a 100ft without pain and just the other day I walked one lap of the Xterra Midwest Cup which was 5k.  For a year I have only worn a pair of running shoes (the last pair I ever ran in) and thanks to Fleet Feet Sacramento I found a pair of Keens that fit over my AFO and I can actually wear them with nice pants or skirts!  And I thought I would wear running shoes for the rest of my life.

 

As much as we sometimes dwell on the negative or worry about how everything is wrong in this world we forget about the small things.  It is so important to look around and realize all that is good and right.  Most importantly we have to remember that our time here is temporary.  We aren't living to die we are dieing to live! 

 

I celebrated my 33^rd birthday two weeks ago and then my 9 year anniversary with Court.  What a joy it was to be able to celebrate after all that I have been through.  Then thanks to Ryan DeCook (and his parents) and Craig Evans I have been able to travel to Michigan and Alabama to continue to be a part of Xterra.  I was able to announce the Xterra Midwest Cup and I will help out in Alabama.  These guys just can't get rid of me!!  I continue to cherish the small things in life.  What else can I do?

 

I go into surgery on June 8^th so please pray that it is successful and that I wake up without discomfort.

 

Powered By God,

Jamie

 

Almost There

I often think about that last day I ran and the day I rode my bike. I ran for only for 10minutes in Tucson, Arizona. Courtney and a couple friends from the camp were with me. The upper part of my left calf hurt like crazy but I was determined to keep going. By the time we finished I could barely walk without limping let alone stretch. It was at that point I knew something was seriously wrong.

A week later was my last ride on the road bike. For a week my leg was becoming more and more uncomfortable but on this particular day it was too much to handle. I was supposed to go for an easy 1hr spin but 5minutes into the ride I was in agony. I kept thinking it would go away but it only got worse. I started crying and by 15minutes I knew I had to turn around. The entire ride back to my car I could barely turn the pedals. The pain was indescribable.

With the amount of pain I was in for both of those days I couldn't truly enjoy either one. Instead the memory of agony is embedded in my brain. If only my last run could have been on my favorite trail in Sly Park, with rolling single track around a lake. I spent most of my winters on that nine mile loop smelling the fresh cedar and damp air. If only my last ride could have been battling it out in Salmon Falls with Courtney and Cliff in 90degree weather trying to avoid the poison oak. The first time I ever rode that trail I crashed over and over. I walked almost all of the technical, steep descents. Months later I was able to ride everything on that trail. It became my favorite place to ride and drop the hammer on all the guys. It has just the right amount of hill climbs and technical difficulty. There are tight single track sections with rocks all over the trail and a cliff to one side. Every once in a while you run into cows or skunks and a handful of other riders but most of the time I felt like it was my own personal trail and I had it all to myself.

The desire to get back to riding my bike and running is highly driven by these memories. I want to feel the wind blowing in my face and my heart rate sky rocket when I am attempting a difficult section. I want to feel the endorphins from running 10 miles at a steady pace. It is hard to get on an elliptical trainer inside 4-5days a week and not miss what I used to do. I am thankful I can at least workout but the longing to do something more doesn't go away. There is no "fix" from an hour of elliptical or 30minutes on a stationary bike. There is no sun that beats down on my neck as I lift weights. There is nothing that smells like the outdoors. There are only TV monitors and florescent lights while the top 40 plays over the speakers.

Two weeks ago I had a mold of my bad leg made. One week later Kenneth made a prototype brace for me to try out on the bike. Yes, one week. It is in San Francisco waiting for me to pick it up and try it out. I have been waiting for my kidney drain to be removed before I get back on a bike but I don't think I can wait that long. I need to get out on the open road. The sun is shining and the outdoors is calling my name. We have a borrowed tandem, we have the brace . . . Courtney just needs to make some modifications to my pedal and shoe along with some special custom bike shorts and I will be able to attempt a ride on the road.

I have a hard time sleeping these days because of the excitement. I didn't expect all of this to come so soon. I didn't expect so many people to jump at helping me get back on the bike. The possibility is right at the tip of my fingers. If only we could solve this kidney problem right now I would be riding tomorrow.

Two weeks ago Total Body Fitness and Bobby McMullen held a fund raiser for me. It was the premier of Bobby's movie "The Way Bobby Sees It!" The film is about how he rides blind . . . On his own bike off-road with a guide. He is a good friend and inspiration. I look at all that he has accomplished and I know I will be able to overcome similar obstacles. It's the kind of movie that motivates you to get off the couch. This movie has inspired one of my best friends, Kacey to do a triathlon in honor of me. I told her I would get her through this and have started training her. Even though she is incredibly sore and her lungs burn every time she jogs she has that desire and determination. I find it inspiring.

As the racing season approaches I encourage you to enjoy the ride. Take in everything life has to offer. And if you are sitting on a couch doing nothing get out and walk. Smell the fresh air!

Powered By God,

Jamie

Taking Charge

Have you ever imagined what you would do if you were told you had cancer? What would you do if your entire life flipped upside down. Would you grab life by the throat and fight or crawl in a hole and let life pass you by?

Through everything that has happened I know two things are certain, God is in control and I am a fighter. My last cancer scan came back clean. What a huge deal that is. God is listening and he answered the countless prayers. This good news means I get to move forward on fixing the drain coming out of my kidney. I am so close to getting back in the pool I can feel it!

After the good news I scheduled an appointment with the Urologist yesterday (Friday.) Since I was already going to be in San Francisco I went ahead and made an appointment with my Orthotist Ken. He is the guy that made my walking AFO and is going to make my bike and running brace! He is the man that is going to make things possible!

My meeting with Ken was great. He is already working on a brace and has a good idea of what I need. I gave him an old pair of my Mountain biking shoes to work with. He made another cast of my leg for the running brace and brought in a piece of paper with pattern on it. Some had butterflies, one looked like a pair of jeans but the one that popped out was the blue snakeskin. He said he could make my brace with this patter. I was grinning from ear to ear. If you have to wear a brace you might as well make it look dope!!

Afterwards we headed across the street to see Dr. Deng, the Urologist. Walking into the building brings back so many bad memories. Every doctor I have met in this building has given me nothing but bad news. Was today going to be different? I sat down in the waiting room looking out at the view. You could see Kezar stadium. It has a beautiful track and is the finish line for the Jamba Juice fun run. Every year I have entered the race I have walked away with a year supply of free Jamba Juice (one a week.) It is well worth the trip. I ran my fastest 5k in that race finishing third overall (women of course.) Looking out that window reminded me of what it felt like to run. It has been over a year since I have been able to go through that motion. The feeling of freeness. I started thinking about all the trail running I used to do. The smells of the fresh, damp air. I almost started tearing up as I recalled all these memories. Then my Dad walked over an sat down next to me. We were an hour early and hoping we might get in quickly to avoid the Friday traffic leaving San Francisco.

We weren't as lucky as I hoped but we finally got to see the doc. We discussed a few options but without knowing the size of the blockage we couldn't move forward. Dr. Deng was able to fit me in on the X-ray table to get a good look at the problem. They had to stick a catheter in me and fill up my bladder to see how much it could hold. Then they filled my kidney with contrast to see how far it was able to drain. On the X-Ray machine you could see all of my insides. Near my bladder it looked like there were a bunch of little worms or maggots. It turned out to be staples. I didn't realize there were so many staples left inside me. I am surprised I haven't set off any metal detectors!

When they were finished we discussed the next step. I was not prepared to hear what the doctor had to say. She wants to detach my bladder and move it up stretching it towards the ureter. Then they will attach the ureter to the top of the bladder. If this is successful everything will work and life will be great. A small amount of urine may flow back and forth into the kidney but it wouldn't affect me.

Downside is that with only one sacral nerve working and so much scare tissue they could permanently damage my bladder and I will never be able to pee on my own again. There is no reversing any damage. I asked how often she performs this surgery and the percentage of people that aren't able to go to the bathroom afterwards. She said she perform it 5 times a year and about 10% end up catheterizing themselves. That was enough for me to freak out! I do not want to jeopardize my ability to use the bathroom on my own. I am already so lucky I can go and I had a really bad feeling about this. I told her I didn't want this procedure if there was even the slightest possibility that I won't be able to urinate. The doctor jumped on me and said it wasn't the worst thing that could happen to me. She went on to say "if this was the worst thing you think could happen to you then you haven't had anything bad happen to you."

Then I really flipped out. Has this past year not been bad? I was a pro triathlete in the middle of my career forced into retirement, I am paralyzed in my left leg and I have no left glute muscle. I have only one sacral nerve controlling the bladder and I have to have cancer check-ups regularly. I think I have had some pretty bad stuff happen so excuse me if I want to hold onto the ability to urinate on my own!!!

I tried to tell Dr. Deng I didn't want to do this. I told her I would rather try and drop the kidney down and if that doesn't work then just take it out. But the concern of all doctors is not wanting to get rid of the kidney that functions properly. They are worried that if I only have one good kidney and something happens to it then I can only survive on dialysis for 5 years if another kidney doesn't turn up. I tried to tell her that plenty of people would offer up a kidney if I absolutely needed it but if my bladder is damaged they can't do a transplant of that.

I left the building absolutely distraught. What am I going to do. Ultimately for the first time the decision is mine. But I am a little scared of making the wrong choice.

The entire drive home I cried and prayed. I prayed God would guide me to make the right decision and I prayed for the patience to not rush it. This is going to be my choice because I don't want to be mad or blame anyone if things go wrong. What a week this is going to be.

When I informed Courtney he called a friend and asked for some advice. He said to get a bunch of other opinions and make sure I find a doctor who instead of 5 times a year does this procedure 5 times a week. So that is what we are going to do. If you know of any Urologists that are the best in their field please get me the info!!

Please pray that everything works out and that God leads me to the right decision for me. And most of all, whatever happens, please pray that I continue to go to the bathroom on my own.

Powered By God,

Jamie

HOW’S IT GONNA BE?

It was pointed out that this year might be an emotional one. As my body begins to heal there is still a lot of emotional healing. Sometimes I feel like I am on a rollercoaster, I am up then down then up again!

Last weekend we went to see the start of the Tour of California. I was able to see a bunch of sponsors, old friends and meet new people. Every time I turned around I was talking to someone new. It was just like old times. I had a great time seeing so many people for something other then football or basketball. Cannondale surprised me with a ride in the LiquiGas team car. I sat up front while we hopped on course behind one of the team riders. It was so cool! We were going about 30miles an hour even in the turns. I swore someone was going to step out onto the road and get run over by us. The entire time the Team driver was yelling something in Italian at the rider. I assumed it was "Go fast you are too slow . . . Pick it up!" Something like that. I only know Gratzi, Prego and Chow!

After that we hung out with some of the Cannondale folks and I got a chance to meet Ivan Basso. He signed a poster for me but some how in the translation my name was misunderstood as Chrissie. It would be a big deal except I wanted to hang it up near Ned and all the other posters I have. Courtney made a call to see if another poster could be signed with the correct name but I doubt that will happen. In the meantime I just look at it and laugh. That was one of my fears whenever I would sign autographs for people. I didn't want to mess up a name or misspell anything! So much pressure!!

Tuesday a photographer from the Sac Bee (my local newspaper) shot some photos of me working out at the gym and with my PT. I had to laugh because people were already trying to figure out my deal and then I had someone taking pictures. One lady jumped on a trainer next to me so she could be in a picture not even knowing what it was for. Afterwards she asked and I explained but I am not sure if she understood she wasn't in the photo! I ended up on the elliptical for over an hour. My longest cardio workout so far. I was pretty excited. Thursday I had to match that so I added on the stationary bike. I spent about an hour and 10min combined then hit the weights for an hour or so! I feel so much better when I get to workout I just wish I could do more. I remember when 5 minutes fatigued my leg and now I am going strong for an hour plus in only a month. I guess you never really get rid of the drive to excel.

This weekend was great. I was able to catch up with friends. Saturday morning I was out at a local off-road duathlon. Then it was off to see very dear friends of mine since I was a kid. We swapped cancer stories and reminisced over old times. It was so great to see them. I realized how much I have missed out on with all the traveling but was glad I got a chance to catch up. I am hoping I get to visit more and do whatever I can to help out.

Sunday it was off to the gym, church and then my best buddy Kacey's house. I haven't seen her for awhile either. We had a great time getting on line and looking up old friends on face book. I just found out there is going to be a 15year high school reunion for us this September. I think I should have a shirt made before I go explaining what is going on so everyone doesn't ask what happened to me!! Not that I mind sharing, I just don't want to tell the same story over and over in one night!

I have started getting into Face book a little more. Everyone says I need to update it more often and write on their wall or whatever you do on it. So all morning I have been sifting through friend requests and chatting online with people. It was actually pretty cool and highly addicting. I better be careful with that. Everyone I talked to was shocked I was online. They know me so well!

This Wednesday I head back to UCSF for a CT and MRI scan. I will know that day if there is any sign of cancer. If I am clean we move forward with surgery on my blockage and if I have cancer we move forward with chemo. I feel like I have been in a holding patter for so long wondering "How's it gonna be?" I trust that God will continue to give me the strength to get through whatever lies ahead in the upcoming days. I am confident everything will be ok!

Please pray there are no signs of cancer and that the doctors will be able to fix my ureter!

Continuing to be . . .

Powered By God,

Jamie