Saturday, March 21, 2009

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,



guruburu said...

jamie how did you know i love jamba juice so much? :)

Anonymous said...

Dear Lord,
You are an awesome God! We thank you for all that we have, all the blessings that you give us. Lord, Jamie needs your guideance in this difficult time. Lord, let her feel your presence in this difficult time. Through you all things are possible. We thank you that you have made Jamie a vessle to bring glory to you. She has been so inspirational to so many, Your will is being done. Lord, I pray that you would bring Jamie comfort and peace during this incredibly difficlut time in her life. Thank you that she has so many wonderful friends that love her and care for her. Lord bless her with your love.

In you name we pray these things.



Jason Taylor said...

WOW, you show a great level of emotion and restraint and I can't imagine what it must have felt like to want to probably punch the doctor. We will continue to pray.

See you this coming weekend. Can't wait to meet you and Courtney.

Linda said...

There is a Uro-Gynocologist at the University of Utah. She is supposed to be a female urological guru. I wanted to go to her with my problems but she doesn't take United Health Care, so we're looking for some one really good somewhere who does. If nothing else you can call her and talk to her. Her name is Peggy Norton. Best of "luck" to you and I'll think of you in my prayers. My 24 year old very athletic daughter was diagnosed with a benign tumor in her brain and needed it removed as it was causing grand mal seizures. she is fighting her way back as well.

Chad in the AZ Desert said...

I think you received the best advice you could receive. Get as many medical opinions from as many experts as you can before doing anything. And find out who is the best there is and go to them. You know from your racing what a difference having the best bike mechanic or swim coach could do for you. Same thing goes with doctors - some are better than others.

Anonymous said...

Hi Jamie,

My husband and I went to High School with Courtney (Kris & Laurel Sorensen)We have been keeping up-to-date on your progress through your blog and through Courtney. I have never met you but I feel like I know you from all that you share through your blog! : ) I work at UC Davis School of Medicine in Sacramento and I will contact the Urology Department and see what I can find out for you. I will tell them your history and hope to find someone who has performed this procedure. I will have Kris call Courtney as I don't know how else to get in contact with you.
Keep up your strong drive! you are an awesome inspiration!
~Laurel (

Marcela said...

Keep up the good work girl!!
Good vibes from brazil. We hope to see you in maui again.
Rodrigo and Marcela