Life's Journey

I'm going to start this post by telling you that I am ok - so please keep that in mind as you read on. I am back in the hospital. Apparently one of my ureters is blocked. The ureter is the tube that urine passes through to get from the kidney to the bladder. So, this is not good. But, the fix may be fairly simple. Here's what happened….

I've been having a lot of pain in my pelvis and lower back over the past few weeks. I have found myself relying on Percocet's quite often which is out of character for me - I tend to avoid pain meds as much as I can. I have also been crazy tired - more than the usual chemo tired. I figured the chemo and pain meds were giving me the fatigue. Still having bad headaches. I've totally lost my appetite. And Thursday I randomly started vomiting. I had an appointment with Michele to talk about changing up my meds. She thought maybe this would help with a lot if not all of these symptoms. Roy wanted to go with me for this appointment and talk about what we do now. When she saw me she realized that something really wasn't right. I was really pale and had tears in my eyes - this is not like me at all. She decided to do bloodwork and an exam. Nothing crazy showed up from either so she requested a CT scan stat. Luckily I hadn't eaten all day because I was vomiting so we were able to go right in for the scan.

Because the scan was ordered "stat" they asked us to stay until the images were reviewed to ensure we didn't need any additional. They came out about 30 minutes later and told us we could go and that we would be hearing from the doctor in the next hour or so. That struck both of us as a little odd. Normally they say the doctor will call once they review the results. So we kinda knew something was coming. We had just gotten on the road when Michele called and said she wanted me to go straight to the emergency room because one of my kidneys was blocked. She explained that the CT images showed the right ureter was completely blocked preventing urine from moving from the kidney to the bladder. This is a big problem. Roy went straight to Good Samaritan Hospital Emergency Room.

They checked me in right away and started running bloodwork and vitals. No one could understand how I was still peeing normally with this problem, but somehow I was. Apparently my left kidney (the one not in trouble) is a superstar and took over all the work while the right side was out of order. Because of all my medical chaos history no one really knew what to do with me. The ER docs decided they were going to check me into the hospital and have me see urology in the morning to determine next steps. But this way I was in a safe environment in case anything happened. So I settled into a bed, got some good drugs to help with the pain and nausea and called it a night.

The next morning a parade of doctors came through to see me. I truly am an anomaly so everyone wants to see what happens next. Lol They explained that the full CT report had not come in yet so we were still waiting on this very important piece of the puzzle. They talked about doing an ultrasound to get another view of the area and calling in urology. I spent most of the day waiting to see what was going to happen. Roy and my mom kept me company throughout the day. More doctors in and out, nurses giving me pain and nausea meds, and sleeping off and on throughout the day. Finally a Urologist came in… slash that… finally someone from Urology came in. She is a Physician's Assistant in Urology and she begins to tell me that they will attempt to put a stint into the ureter to open in up and allow urine to pass from kidney to bladder. They don't feel confident that this will work so they will also be placing a nephrostomy tube. This is a tube they place through my back into the kidney and connects to a bag to collect urine. Basically it's a pee bag connected to my back. Sounds fun - huh? I asked how long this would need to be in place and she explained that it would strap to my leg and be a permanent solution. I'm not going to hide the fact that this is the point where in my head I completely freaked out!!!! I kept my cool on the outside and gathered my thoughts. I asked all the right questions… what are other options? None why won't the stent work? Because of the blockage Can a laproscopic surgery potentially resolve the issue? I don't think that's an option. These responses were not making me happy and I felt like this chick just didn't care and frankly wasn't that bright. I already had been researching on my iPad potential solutions and laproscopic surgery and a stent are both viable options - not a forever pee bag strapped to my leg. I explained to this underqualified Urology PA that I have terminal cancer and under no circumstances will I spend the rest of my days with a pee bag strapped to my leg. I could tell by her reaction that she had not done her homework, this was news to her. I don't even know that she was aware that I am a cancer patient at all. I was not pleased. SO she said she would reach out to the resident urologist and get back to me. If nothing else I hope I taught this PA to always at least skim the chart before talking to a patient. We are people not objects. Ok, this next part may be my favorite part of the story. Keep in mind I've been in a significant amount of pain and was told to go straight to the hospital to get it taken care of. This lovely PA comes back maybe 15 minutes later, says she spoke to the urologist and they are not going to do anything. Long pause of silence. Wait? What? Nothing? I looked around wondering if this makes sense to anyone? I asked what she meant and she said we will send you home and if you get more symptomatic then we will intervene. I asked what "more symptomatic" meant and she explained that most likely my kidney will blow out. Yup, you read it correctly…. Blow…. Out…. Sounds fun! NOT OK. I let her leave as I was now crazy confused and super frustrated. I talked to my mom and roy about it and none of us were believing what we just heard. I hated this answer so I went straight to Michele. I told her about this shocking conversation. Her reaction was just as dazed and confused as ours.

Once the dust settled from all of this Dr. Bhoola ordered a procedure to be done. Dr. Bhoola is filling in this week for Dr. Borst because he is out of town. I like Dr. Bhoola and trust his opinion. He said we are going to put the stent into the ureter and we will put in a temporary nephrostomy tube and bag. I made it very clear that this was temporary - I am not going to live with this bag more than a few days and he understood. Last night they did the procedure. It's not a very invasive process so they use twilight sedation - this is where you are partially awake but they give you stuff so you don't remember anything. I've had this type of sedation done a few times so I feel ok with it. The process is to go in through my back, using a needle and xray vision they guide the stent into the ureter. Then they insert a tube into the kidney that feeds out my back into a bag to drain the kidneys. Sounds pretty scary but only takes about an hour. I was pretty scared of this entire process. Before I knew it I was laying on the table in wonder woman pose unaware of what was happening. 

Next thing I knew I was back in my room with mom and Roy there to help me. All I knew was that I was hurting and it felt like I really had to pee. I tried to pee but nothing happened. Then my teeth started chattering and body was shaking. I think I was in tremendous pain and shock at the same time. They gave me lots of pain meds and I eventually fell asleep.

It is the next day (Saturday) at 8:30pm. There has been a lot of poking and proding, this and that happening to me today but nothing of real significance to report. I am still in alot of pain so getting some good pain meds from the nurses. I still often feel like I have to pee really bad but nothing happens. I'm getting "used to" peeing out of my back. LOL That's basically what happens via the tube in my back to the bag I carry around. The urine is still quite red so it will be there til it begins to run clear. Sigh. I feel like that may take some time. I'm staying at the hospital again tonight and we'll see what happens tomorrow. My parade of doctors will come in to see me in the morning and determine what the day will consist of. I'm such an anomaly they are never sure what to do with me. For now I have a room with a view of Camelback mountain at sunset. Still have to take time to enjoy the little things.

Sending hugs and smiles,

Sarah