Life's Journey

It's Tuesday and I'm still in the hospital… It's been a long six days here. I've been on quite the pain med cocktail since arriving. Having a tube through your kidney and out your back is quite painful so the doctors have been pretty generous with the pain meds. It's tough to determine if the pain is from the kidney issue or just from cancer in general. But, either way the meds are working.

In the last post I mentioned that we were waiting for the urine color to clear up before we could remove the tube and bag. Last night the urologists said it was "clear enough" to go ahead and take next steps. So, this morning they clamped off the tube - this means the urine has to go down to the bladder, there's no other way out. The goal is the make sure that I can 'pee like a person' I drank a ton of water and sure enough I was a person again! I've never been so excited to pee! I did a little happy dance, gave nurses high fives, and celebrated. But, it really hurt. I talked to the docs and they confirmed that this is my "new normal" and I will get used to it. It was also very red which apparently is ok for a while. I'll be honest, it doesn't seem or feel ok, but I'll go with it for now. Next step was to go to the IR Team - this is the group that put the tube and stent in using radiology procedure. It took a few hours before they had an opening but I was then wheeled onto their floor. First they pushed contrast through the tube into my kidney and forced contrast down the stent into my bladder while taking xray images. This would confirm that the stent was working properly. Ok, this did not feel awesome. The kidney is not meant to have fluids forced through it. But, the good news is - IT WORKED! YAY! This meant we could remove the tube - woot woot! I was all prepared to go into twilight sedation again but to my surprise the process is hang on tight while we rip the tube out. Yup, that happened. This was not something I enjoyed at all, but I've been through worse so "git er done". While it hurt coming out, it feels so good to have it out. No more pee bag!

There's no real limitations with having the stent in place, I can eat and drink normally and activity is fine. But, I will need to have it replaced every 3 months. We also discussed that this is not a permanent solution - we still need to figure out what is pushing on the ureter that caused the blockage that started this week's chain of events. Dr. Borst wants to perform a PET Scan next week which will help us better understand what's happening. If it is inconclusive we will talk about a possible biopsy of some tissues to check for disease. Right now it's one day at a time. First goal is healing from everything that happened this week. We are putting chemo on hold for the time being and will determine treatment protocol after the PET Scan. This week has been rough, painful, scary… but I've been strong, fought hard, and worked hard to keep my head on straight and get through it. The hard part is only just beginning. This is where I have to wait for the PET Scan. Now I have to wonder what's really going on in my abdomen and pelvis that's causing these issues. Has the disease spread yet again? Will stronger chemo help again? Is this just the beginning of a long line of issues that are going to happen? I'm scared. I'm sad. I'm angry. And I hate waiting…. So I turn to my bucket list for distractions.

A few months ago I received a call from a friend in DC telling me that Dave Matthews was going to be playing in concert in Virginia not far from her. She knows this is on my bucket list. She bought tickets and I booked my flights. The concert is this weekend. When all this started with my kidney I got the pang of disappointment at the thought that I probably wasn't going to be able to go. When I met with my docs on Monday I told them the story, explained that it's on my bucket list, that it's been booked for months, and that I've been looking forward to it. I also made it clear that I didn't want to risk my health or rush any treatments but I had to ask if it was possible if I could go. Dr. Borst has been my oncologist since the beginning, he has helped me through the past 5 years, he knows me well and understands my situation better than anyone. He said that he will do everything he can to get me to that concert. He said it would be good for me to do something fun like this and he wanted me to go. Today he gave me a write up summary of my medical history and told me to keep it on me just in case something should happen although he does not foresee any issues. He told me to have a good time and he would see me next week. I shortened my trip a little and made it a long weekend. I leave this Friday. I know it's super close after all of this and maybe a little crazy. But, here's the thing… I'm doing all this treatment and medical interventions because I want to live. So I am not going to waste any time. I am going to live! I will rest at home until it's time to go… I will take it easy on the trip… but I am so excited to see my friends and go to this concert… to just have fun for a few days…. To live!

Hugs and Smiles!