Sunday, July 1, 2012

All on the same page

I had an appointment with Dr.Koeneke (my oncologist) this last Thursday to just go over our plan of action. When he came in with the pathology results from this last surgery, he was a little concerned. The tumor was now being classified as neuroendocrine, which is a type of cancer found in the lungs. I knew the adenocarcinoma cancer was very rare, but this one was even rarer (less than 1% of neuroendocine are found in the bladder). With this new twist in things, we would have to change my chemo plan. He was thinking I would now just get two types of chemo instead of the original four and I would go 3 days on instead of 5. This regimen would be harder on my body but since this cancer is considered a small cell cancer and is very aggressive we want to be just as aggressive back at it.

After hearing this news I was ready to get up to KU Cancer Center in Kansas City to hear what the specialist had to say there. I didn't know what to think, I didn't know if I needed to get a hold of cancer centers to see if I could get in there with this being so rare. It was sad sitting in the waiting room of the caner center because you knew what each and every person was in there for.

We met with Dr. Van who was this quite older man. I was nervous to hear what he had to say, I didn't know if he would agree with Dr. Koeneke's plan or not. We talked with him for a while and I left there feeling confident we would beat this. He felt Dr. Koeneke was right on track with the treatment plan. and he didn't feel we had to rush to start anything because getting the right regimen set up is more important than rushing into things and having to change it down the road. He wanted the slides of my tumor to be sent up the KU pathologist for a second look and for me to get a PET scan before we started chemo. The PET scan is to make sure there aren't any other lymph node involvements since we found one in the last surgery. He felt we could wait 2-3 weeks to start chemo, which was a relieve to me but I was just want to start it so I can get over this. I will get a PET scan on Tuesday and I will also get my stitches out that day and we are planning on starting chemo next Monday. I have an appointment set up with a fertility doctor in KC to discuss my options. They didn't feel chemo would effect my ability to have babies but since there is a slight chance we are going to meet with this specialist. Since everything is moving so fast I am not sure what can be done, I will have already started chemo by the time I can get into the doctor, so we aren't sure what they will tell us. Right now I am more worried about getting myself healthy, there are other options out there if we are not able to conceive.

We got back to Manhattan and went straight to Dr. Laki's office to get my catheter out!!! I was now a free woman, I didn't have to carry my pee around with me every where I went. They warned me that I may have to use the restroom more because my bladder was smaller, but it hasn't been real bad yet. I am not sure how Kyle felt about me not being tied to the side of the bed any more! I like to roll and take up as much space as I can when I am sleeping and this last week has been rough on me. I was now free to roll all over the place and that's exactly what I did.

Dr. Koeneke has been in touch with MD Anderson throughout this whole thing and when he talked to the doctor down there she had agreed with the treatment plan as well and told him she had just ran into another case that involved a neuroendocrine carcinoma of the bladder. Which was weird since this is a very rare type of cancer in the first place and now the MD Anderson doctor has seen two within the last month!

Now that everyone is on the same page, I am ready to start and kick this cancer in the butt so I can get back to racing and working. 

This weekend I felt pretty productive, we got to work on the backyard a little on Saturday to get ready to have people over on the 4th and I also got to get into the pool for a little bit!! Sunday I cleaned the house and we took the puppies to Petco. I still have to take breaks every 20 minutes or so when I am up doing things, just because I start hurting.  We watched the Olympic Trials, which was hard to do because I was suppose to be there but Dr. Laki told me I should stay close to home. I also got to listen to my brother win the Jegs All Star race in Chicago on Saturday. That made me want to be at the track more than anything so I could celebrate with everyone. 

I want to thank each and everyone of you for reading and for all the encouraging words, they really mean a lot during this rough patch.



  1. J, you are going to kick this cancers ass! I have no doubt. Keep your head up and stay positive. Always thinking of you and sending good thoughts roomie!

    Love you,


  2. I am so glad to hear you are ready to start and kick this cancer in the butt stay strong and livestrong.
    Love Yea RD

  3. I am glad to hear you are using KU Medical Center. They gave me such good care 28 yrs. ago. I have all the confidence in the world of them. You also will be close to the ones that love you and can be with you through the whole process. Thinking of you.

    The Ekarts!