Winding down and Moving On

A real winter has happened this year in Madison.

I haven't been keeping up with this blog because I haven't been able to ride bike due to the snow and ice that have just kept coming all winter. Most years we get snow and then it gets warm and the snow melts and the bike paths and sidewalks open up again. This year they didn't.

It was a great year for ice skating, however, so I did that. The route from my house to campus (and this coffee shop) crosses a big lake and I don't go there.  So I ended up skating in much smaller circles on the ice at a local lagoon.

No news is good news...

The other reason I haven't written is that there really isn't much to tell. And, unlike cable news channels, I don't feel the need to 'report' if there's nothing going on.

I have gotten quite comfortable with my 'new' body and it's demands are becoming automatic (mundane?) and fading from my consciousness. Not to say that I'm ignoring them. I have kept the new habits that are designed to mitigate any chance of a relapse and to strengthen my remaining body and it's organs. And I continue to strive to minimize stress upon these systems by drinking lots of water, a nutritious diet, regular exercise, and a healthy environment.

... for now??

I will keep writing but since it is off topic for this blog I will probably concentrate on other blogs and my own web site. Thank you for reading. I will pick this up again if and when there is something to write. Let me know if you have any questions, suggestions, or new information relating to bladder cancer or cancer in general. Or if you'd like to share your own experiences. I would love to hear from you.

Old dogs...

This old dog has learned a new trick - from a cat.

Yeah, this is about neo-bladders and peeing - but it's short. 

Our cat, Ellie, has a habit of coming into the bathroom whenever she hears me sitting down to pee. She meows and rubs up against my leg but whenever I reach out to try to pet her she starts walking away.  A couple months ago I grabbed her back and she lay down and let me rub her stomach. In order to do this I had to bend over completely and - low and behold - this forced a lot more out of what I'd thought was an empty bladder (I'd already gotten all I could get using 'traditional' methods).

This makes sense, now that I think of it. When I'm folded over like that, it compresses that whole area.

We learn a lot from our cats but it's usually only about how to keep THEM happy. Thanks for this one Ellie.

Thyroid results

Just a brief note about Thyroid levels.

As I said in my last post, I have bad been feeling weak, sensitive to hot and cold, and I had been loosing weight (about 10 pounds) without changing my diet.  My doctor checked my thyroid levels and found them to be out of kilter so he sent me in for further tests. Among these were an iodine uptake scan where I drank some radioactive iodine and they watched where it went in my thyroid.

He also sent me to an Endocronoligist, in March, who told me the following:

Better news: 

I did have Hyperthyroidism where the hormones that the petutitary gland uses to control the thyroid are the following:

• TSH low
• T4 high.

But my Iodine uptake was also low which was a normal response for the thyroid under these conditions.

This indicates that things are working but for some reason thyroid is producing too much - pituitary is reacting normally ( it lowers TSH to tell the Thyroid to stop producing so much) For some reason the Thyroid wasn't listening. This may be due to a virus-like thing in the thyroid that will likely pass on it's own.

So we'll watch this by checking levels in a few weeks intervals. Things should level off normally with time. Not quickly.

If not this can be treated with supplemental hormone therapy. This is a very easy thing with no side effects.

Better feeling:

As of April 15th, I have not had another test but I am feeling completely back to normal. My strength and endurance are back; I have normal response to temperature (no night sweats); and I'm gaining my weight back nicely. I'm not all that thrilled about the last one but I'll take it along with the others.

Happy New Year.

Hello 2013! What's up?

As I pass into the new year I look back BRIEFLY, if only to count the years since my surgery and thank God for the 3 years I have been given. Okay, that's it - onward....

Status:

My Creatinin levels have stabilized (again) at 2.1 so the doctors are happy. Before last fall they had stabilized at 1.9 and they were happy with that, as well. I have to wonder if this is going to continue and these levels are going to continue to slowly creep up. Does it mean that my kidneys (or one remaining good one) are deteriorating and will continue to do so until... ?

I feel good. No kidding and I'm not just 'dancing' around this [see 14Aug12 blog 'May I have this dance']. I don't feel the same as I felt before this all happened but who feels the same as they did 3 years ago, anyway.

I have noticed a real decline in strength and endurance over the past few months. I also have had problems with being too cold in the day and too hot at night (no matter how many covers). I have been loosing weight at a time of the year when I usually gain (how can I complain about that?). I have only just talked to my doctor about this (I put it off for fear that he would say I was just getting older) and he checked my Thyroid levels. These are, in fact a bit out of whack so I am scheduled for some followup tests:  and have an appointment with an endocrinologist. Stay tuned.

Thanks.

Repeat of test showed improvement.

The repeat of the blood test for creatinin showed a drop from 2.3 to 2.1 so we're good for now. But I'm scheduled for another test in only 3 months.

Relieved? Yes we are. Thank you.

Surviving a Neo-Bladder

I just got the results from my blood tests (we had hoped that this was all that was needed for my latest post-surgical checkup).  But the tests show that my creatinine level has risen from where it had been since the surgery to something a little higher. I will re-test in a week to verify and then my surgeon/urologist may want to meet and talk things over.

My friend called again to tell me he is still contending with tubes, nephrostomy bags, stents, fevers, antibiotics, office procedures, and hospital stays while the doctors scramble to solve his declining kidney function.  You will recall that we met when he was in the hospital recovering from this same surgery while I was recovering from mine. A few weeks ago he went in for follow up tests and his creatinine levels had spiked (much more than mine). [See 'Are You Kidney-ing Me?' blog entry]

Now that I have learned that my levels have started to go up - after being steady for 2 years - I am a little scared. I've looked around the Internet for information on kidney problems following Neo-Bladder and found a study which concluded that a rise in creatinine levels is normal after this surgery. [click here to view article] It also found an increase in occurrence of hydronephrosis (ie. problems with the kidneys).

"A relatively large number of patients developed hydronephrosis. Five [out of 31 patients studied ] were related to stricture of the distal ureter and another with suspected upper tract recurrence. Our stricture rate was 17.9%; most authors report a lower stricture rate between 1% to 8.5%..."

This study only followed 31 patients over one year period after surgery. It sites a lack of long-term data. I'll keep looking ...

I've already been treated for this in my left kidney and now I'm afraid I will need the same for my right. Well, we'll just have to wait and see.

Meanwhile, we're getting a great, soaking, two-day rain here in Madison, Wis. We'd have given a lot for one of these this past summer. This will help recover our reserves for next year's growing season.

Are You Kidney-ing Me?

I don't remember if the subject of kidneys came up in our discussions with the urologist before this surgery. If it had, I didn't think much about it other than the possibility that the cancer may have spread to them. And I was so relieved, when I heard the news that there was no evidence of cancer beyond the tumor that was my bladder, that I put kidneys out of my mind.

So when my urologist later concluded that my left kidney was no longer functioning due to a callous formation in the ureter following the surgery, I was shocked - to say the least. But both he and my regular doctor seemed to be pretty much unconcerned by this loss saying that I still had one good kidney and that was plenty for a body to live with; "You'll be just fine."

The other day I got a call from my friend; who I met in the hospital recovery ward after our neo-bladder surgeries (he had the same history and procedures as me.) He called to tell me that he had just gotten out of the hospital. It seems that during his regular post-surgery checkup with the urologist, his creatinine counts were way too high (an indicator of poor kidney function). They did tests and determined that his right kidney was swollen and that flow was severely restricted down that ureter. (He has had the same problems with his left kidney as I had and he is depending on his right kidney for nearly all his kidney function - same as me.) They immediately installed a nephrostomy tube and bag in order to drain the kidney.  While he was in recovery his temperature spiked to 102 so they admitted him to the hospital and put him on I-V antibiotics. After a couple days they sent him back home and have scheduled him for a stent from his right kidney to his neo-bladder.

I have talked about my fears in loosing my kidney function in previous blogs. My older sister died of complications from kidney failure so perhaps I am a little more sensitive to this possibility. She had fought rheumatic arthritis for many years and in the end it came down to a choice between pain and kidneys. She never let the pain slow her down and had many joint replacements so she could function as a teacher and a parent. She wasn't a good candidate for transplant because she still needed mega-doses of pain relief and a new kidney wouldn't last very long. (She wouldn't even discuss donation.) And when the kidneys go...

I am told that I would not be a candidate for transplant until I am some number of years cancer-free. This applies to my friend as well. So I pray for my friend's success with the stent.

I am about due for my next check-up and look forward to better news from my tests.