Hurry Up and Wait…and Wait…And Wait

Image result for bladder cancer cartoonA couple of weeks ago, we met with the oncologist. The good news was that the cancer had not spread from its happy home in the bladder to the prostate after all. So it was stage 1-2 rather than stage 4. It was aggressive but there was only one type of cell. The bad news was that the bladder and prostate had to come out. The only other option was to let it kill you. The doctor did not recommend that option.

Obviously if you don’t have a bladder, the urine has to go somewhere else. There are two options. (Actually there is a third, but it seems to encompass the worst aspects of the other two so the doctor doesn’t perform that one.) One is they leave a hole and attach a bag which the person empties regularly. The other is to create a pouch out of the intestine which functions like a bladder.

Image result for plastic bag clipartIt would seem like a no-brainer. Who would want a bag when you can have a new bladder? Actually a lot of people. The intestine is full of bacteria which is good for it, but not good for a bladder. So infections may be a problem. Also, since things are getting reattached and Frank’s cancer is at the neck of the bladder, they might miss some of the cancer cells. By the time the cancer was found, it most likely would have metastasized, particularly since it is aggressive. Once again, there is the nasty issue of the cancer killing the patient. A significant downside.

The doctor said that Frank would need to decide within a week. Frank was going fishing the week after. When he returned it would be too late. We didn’t want to miss the window of opportunity.

Image result for lurkingSo Frank thought. And thought. Talked to people about it. Decided that he didn’t want the possibility of some of the cells lurking in him. He called the doctor’s office and told them he would go with the ostomy. They said they’d call back with a date for the surgery.

We waited. And waited. Finally they called, a week and a half later. Apparently the window of opportunity only operated on our side. The date of the surgery is August 15. Yes. He had to wait seven weeks for the surgery.

Image result for fishing clipartFrank is currently on his fishing trip. The doctor’s secretary left a message today that she needed to talk to him. I decided that I should call her back rather than have him call on Monday (and me worry about it the entire time.)

She seemed rather concerned that Frank was on the trip. I told her the doctor knew. “Oh well. He must have forgotten about it.” Was it something urgent? Did they need him right away?

No; they needed a CT scan before the surgery. The August 15 surgery. Frank has a bunch of pre-op appointments on August 4. They had an opening the same day at CT. Would that work? That would be wonderful. She asked me a bunch of general questions about Frank’s health, and we were done. Crisis averted.

Image result for cat scan funnyI shouldn’t complain. Frank has a wonderful doctor. Some extremely well-regarded oncology surgeon with a fantastic bedside manner. A professor at the University of Michigan Medical School. Someone who actually looked at the file well before the surgery and noticed that the CT scan had not been scheduled.

So I will wait.

(pictures courtesy of Google Images)

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Would You Like Rubber or Plastic With That Sir?

Image result for ugly clipart imagesWe got to visit the Cancer Center for the first time on Tuesday so they could remove Frank’s catheter. Before we ever got to see anyone, I was confused. They told use to park in P1. So far, so good. Except it’s hidden around the corner from the building. There is a big sign: Parking for Cancer Patients Only, Please Stop at Attendant. So we stopped at the attendant. Very nice lady. She asked if we had an appointment at the Cancer Center. I said Frank did, so she waved us in. Impressive security.

The structure had lots of open spots. Unfortunately, there were no signs on the first level telling us where the building was. So we parked, and turned the wrong way. We ended up walking up the ramp to the next level. If we had turned the other direction, we were across from the unmarked entrance. Good thing Frank’s sick, not decrepit. I never would have found the Emergency Room. And my phone doesn’t work in parking structures.

Image result for medical center interiorWe found the correct level in the Center.It looked like the concourse at an airport: Reception A, Reception B, etc., as you moved down the hall. Of course we needed Reception E at the far end. Frank went up to register, and I waited. Finally he came back. There was some sort of emergency at E, so he would get in quicker at B. Of course.

He did get in quickly. A very cheerful medical assistant came in to set up everything. She was quickly followed by a nurse. Who is even more cheerful. Maybe it’s a requirement when you apply to work there.

She said that she would remove the catheter. When Frank stood up afterwards, the downward pressure of his organs would cause him to urinate because of all the water they told him to drink before the appointment. Then he would need to drink more water there and urinate a second time before we could go. Sounded easy enough.

Image result for bladder cartoon imagesAs they say, the devil is in the details. When he stood up, Frank didn’t have an urge to urinate. At all. It turns out that because the tumor is at the bottom of the bladder (where the urine leaves), his bladder has compensated by being over-extended on a regular basis. So this might take a while.

Add in Frank’s natural shyness, and it was not a recipe for speed. I had to keep leaving for water and coming back in, which was bad enough. But the nurses kept checking in for progress. Women (especially after childbirth) are used to having people look at their private parts. Men are not.

He finally got enough urine for both containers, so we thought that we were good to go. Then the nurse decided that even together, it really wasn’t enough for the amount Frank had been drinking. So they did an ultrasound. Way too much urine was still in the bladder. Back to the catheter.

Image result for catheter clipartDid he want the bag back or self-catheterize? Anything to get rid of the bag. So they had to teach him how to use the catheter. No worries. He had been trained at the beginning of this process when they thought he had a bad infection. The Center gave him two nice rubber catheters that could be washed and reused.  The ones at home were disposable plastic. So we could finally be on our way.

Not so fast. Since Frank had to go back to being catheterized, our nurse had to speak with the doctor’s nurse. That nurse couldn’t speak with the doctor until Thursday. Someone would call Frank Thursday or Friday to let him know what would happen next. The only thing that was certain was that his return-to-work date of Monday was now tentative rather than definite.

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At least we found the car with no trouble.

 

Coming Soon: What’s Next

 

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So it Starts

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Cancer is such an ugly word. My mother survived three bouts of “female” cancer. My dad survived colon cancer. And here we are again. Let’s begin with a brief timeline.

My husband Frank had been having dark urine for several days when he saw blood one day.

May 3 – He went to the clinic and gave a urine specimen. It showed blood, bacteria, and protein. They gave him and antibiotic and made an appointment with a urologist for the following Friday. He took the antibiotic, but the blood increased.

(The clinic is affiliated with University Hospital at the University of Michigan)

May 9 – Frank called the clinic and went back in. The bacteria was gone. (The plot thickens.) The Physician’s Assistant made an appointment for a CT scan before Frank saw the urologist.

May 11 – We went to Ann Arbor to get the CT scan. We had been there previously for a CT scan on his heart and thought it would be the same in-and-out process. You would think that having endometriosis and two children it would have dawned on me that you can’t do an abdominal CT scan without filling the bladder. You would be wrong.

May 12 – Frank saw the urologist at the clinic. The news wasn’t great. He had kidney stones, an enlarged prostate, and bladder cancer. That was the bad news. The good news was that it looked like it was only in the surface cells at the top of the bladder. Strangely, surgery the bladder appeared to not have been fully drained. (Dramatic foreshadowing.) 

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The doctor told Frank that he would have to have surgery to remove the cells. Frank told the doctor that the surgery couldn’t interfere with the fishing trip he takes with our son every year. The doctor wasn’t impressed.

May 15 – The hospital called Frank. The surgery was scheduled for June 2. Well before the fishing trip. So far, so good.

June 1 – The hospital called with the information about the surgery. We were hoping for an early start. We had to be at the hospital at 11a for a 1p surgery. Rats.

June 2 – They started the surgery early. I waited. At approximately the time they said the surgery would end, they called me into the conference room. I waited. And waited. (Not a good sign.) Finally the surgeon came in. The first words out of his mouth after the introduction were “Well, it’s over.” (Bad sign).

It turned out that the tumor was much larger than the urologist had thought. What he thought was urine was actually the tumor. And the surgeon couldn’t get all of it. And it looked like it was invading the prostate. And he might have to remove the bladder and the prostate. (Much worse than expected news.) 

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He was a very good communicator. He even drew me a picture of the male plumbing and showed me what he was talking about. Too bad what he was talking about was so awful. He said we would see him in two weeks to go over the pathology. (I like him, but I really don’t want a long-term relationship with him.)

I went back to the waiting room and texted the appropriate people. Those keys are hard to use when your brain is numb. I called our 20-year-old son and left a message. He called back but couldn’t get through. So I texted. I would have called our 21-year-old daughter but she isn’t speaking to us.

Finally I got to see Frank. He was alert and pretty much ready to go. Turns out that the surgeon had not spoken with him, so I had to tell him what was going on. (Unpleasant surprise.) He has to keep the Foley catheter in until Tuesday. (Blech!)

Frank ended up sleeping downstairs on the sofa. The height is much better than the bed while he has the catheter. He slept with one cat. I slept with the other. I finally cried towards morning. The cat was good about getting wet fur.

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Coming soon: removing the catheter.

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