A Sympathetic Ear

I’ve been on four walks of 11 miles total in the last three days. The first three walks were with a camera, so I was out for a bit of time for each.

So my real goal is to keep my weight down. I’ve lost almost 20 pounds since before surgery. My primary care physician, I’ll call him Dr. “PC,” said, “you’ll gain it right back.” Then he looked at me and said, “You are really better off if you can keep the weight off. The best thing is if you can stay on the bottom side of normal for your height. Skinny is better.” The evidence is there – my blood pressure is now normal with no medication.

As for my request to see a dietician, we had an interesting exchange. When I asked about a referral, he started by telling me I should see my kidney doctor for that referral. Then he added, “The blood work will tell us how your kidney is doing.”

Then I said I was concerned about a dietician’s point of view. He agreed, and said, “You have to understand that there are dieticians and then there are renal dieticians.”

A rubber glove as found in Sunnyslope.

Maybe I’m rationalizing this, but what I heard is let’s see how your kidney is doing. If it is functioning normally, let’s do the things we must to keep it that way, which is to say don’t abuse it. But as a quality of life thing, don’t start a strict renal diet unless there seems to be a need to. And going to see a renal dietician is going to get you started with a strict diet.

All of this is to say that I went down the hall to give three vials for some blood work. One of them was specifically to test how my remaining kidney is doing. Dr. “PC” called with the results, which are wonderful. My remaining kidney has stepped up, as he said it would. Dr. “S” reported the same result around the time I got out of the hospital.

Dr. “PC” had explained to me that the remaining kidney actually enlarges and increases its functionality in people who have my surgery. I need to take care of it, by keeping my weight down, watching my potassium and salt intake, and drinking lots of water.

Great, just what I want to do, with my bladder being smaller from surgery. Just kidding! Peeing a lot is a small price to pay for staying healthy and not having to totally give up on tomatoes. The former was probably more information than anyone really wanted.

My son’s hands and a metate y mano at the Heard Museum

One friend sent a link to vegetarian recipes on the web.

And more friends came to visit last Sunday. They brought low-fat recipes and a vegetarian cookbook. Both sets of recipes are all simple things I can make in under an hour. A normal cook might do it in a half-hour, but I’m slow. In any case, there are so many new things to eat.



The Ethan Fire has been burning south and a bit west of Phoenix for three days. The late afternoon and evening skies over the city have looked a bit apocalyptic.

I believe that I must have encountered this NPR blog about cancer some time ago. It is much more poignant that whatever I’m doing here, but Leroy Sievers is facing problems way more out of control than I. There was recently a photo gallery done by his community. My heart goes out to him and to his readers.

This and That

Phoenix, Arizona; June, 2008

Well, I think I’ll hold off on the third story for a bit. Much has happened, and I’ve found it difficult to find the time to sit down and write about any of it. Dr. “O,” the oncologist called with good news. Currently, I’m off diet number one. That means I’ve steadily been increasing my fat intake, although it is nothing approaching what it was pre-surgery. A new renal patient diet looms, and I suspect that I’ve been in denial about that. I’ve been walking in a couple of more interesting places. And sadly, we had to put our dog down. We’ll see how far I get with these tales.

Piestewa Peak, June 20, 2008, fifty-five minutes after sunrise on the first summer solstice after being officially renamed.

Dr. “O” did call me back. He had finally spoken with the pathologist to clarify one loose end. It was good, if somewhat frightening news. The cyst Dr. “O” had indicated in my drawing was not one that had been there all along, as I had earlier described it.

Apparently, the cancer had grown to fill the renal pelvis. I believe that it is called the pelvis because it is the backend of the kidney where urine is collected before sending it down the ureter to the bladder. The cancer had grown to the point that the urine flow out of the kidney had essentially stopped. Pressure had built, and that formed a cyst.

The good news is that the cyst was intact. The membrane or outer boundary of the cyst had held the cancer within the cyst, and hadn’t allowed it to spread into the rest of the kidney. If that hadn’t been true, Dr. “O” and I might have been discussing chemotherapy.

So I’m hearing the phrase, “pressure had built,” and all I can think of is how much pressure can an organ really stand?

It’s weird, too. Remember the idea that my body is infrastructure? At the end of the June 15 posting, ‘The Oncologist, Part 2,” I included a photo of a sidewalk and curb. What I saw was that at the site of the cracks, the curb bulges out toward the street. Through time, something had applied such pressure to that spot that the concrete had cracked and deformed.

A United Airlines jet on final approach over a Phoenix park, June 18, 2008. Yesterday, United Airlines announced the layoff of 950 pilots.






The cracked concrete is like my willingness to stay under 10 grams of fat per day. The truth is that the surgeon, Dr. “S,” had asked me whether I could stay on my low fat diet for another two or three weeks. I said sure, thinking I’d be a great patient and make it three weeks. Well, two weeks roll around and I’m not feeling as heroic as I am hungry. My friend calls me up on Father’s Day and asks our family over for dinner. Among other things, he made a vegetarian stir-fry and steamed a couple of red snappers. Who am I to refuse the kindness of a generous host, so I ate a couple of ounces of snapper, without the skin. Delicious!

So the next night, I grilled chicken breasts for my wife and I. Remembering that I am not supposed to slam my kidney with a large protein meal, like a pound of steak, I had a small half of one chicken breast, without skin, and I’ve basically decided that I’d been good long enough.

So then I look at this paper avalanche I brought home from the hospital, called the renal patient diet. I discover, to my horror, that I’m not supposed to be eating oatmeal, tomatoes, broccoli, asparagus, zucchini, pickled vegetables (i.e., kim-chee, and tsukemono!), carrots, brown rice, edamame and black beans, among other things. Forgetting about the salt, apparently there is a problem with the potassium content in many of the veggies I had been eating as I was being a good low-fat eater.

Well, at least I figured this out before I killed my other kidney. So now, I’m waiting to see my physician to get a referral to a dietician. I believe what the dietician will tell me is that I am someone who has fifty percent kidney function, and I do not have the safety net of a second kidney, so I am going to have to toe the line.


Switch points lever and indicator with a passing train

In the meantime, I’ll just try to lower my intake of those foods. Tomatoes and broccoli are going to be tough, though. I have a hard time imagining life without marinara sauce, beef and broccoli stir fry, kim-chee and carrots.

After the six days on a liquid diet, when I first started with solid food, Dr. “S” asked me what I’d had to eat the day before. Among the foods I listed were oatmeal, asparagus, brown rice, and tomatoes. He didn’t flinch. Maybe it was a matter of priorities – obviously repairing the lymphatic channels Dr. “S” had cut out was a priority. But since those four foods were on the “foods to be avoided,” I believe that eating some of these foods must be on a relative scale – a scale I haven’t seen yet.

The hardest part will be the portions. Anyone who knows me knows that I have a good appetite. It is fairly common for me to prepare a four-portion meal for my wife and I and have just a little left over. She eats way less than I. But if some food has a 15% daily value of salt or potassium, and I eat 2 portions, I now have eaten 30% of the daily value.

So for now, I’ll do the best I can to reduce the high potassium foods, be better than I have been about salt and hope that I can get some sympathetic answers from a dietician who isn’t a fascist.


Yerberia, Phoenix, June 2008






For my students’ sake, I hope I don’t have to go around hungry all the time. Some of my advanced students, who have studied with me for several semesters, bring food on critique days out of self-defense.





Martine’s Snack, May, 2004

The Oncologist, Part 2

It’s Sunday, June 15, 2008 – Father’s Day.

Last Monday morning, before my appointment with the oncologist, I made this image of what I believe to be a smokers’ break area behind a local “customer care center.”

So there was this thing that occurred as my wife and I spoke about taking care of myself with the oncologist, Dr. “O.” I want to get it right as a story, so bear with me.

At the outset, I must say my wife is being very kind about my being on a very low fat diet. We are meat-eaters, me more than she, but because I do much of the cooking, meat is on the table a lot. I am a bit surprised how easily I have taken to eating my new, nearly meatless diet. My wife dog-ears recipes that she has found. We’ve been together long enough to know flavors that we both like. I’ve been cutting lots of veggies. My back has been getting sore from standing over the kitchen sink.

We have had this question about what my new diet should be, as it has been made very clear that a large steak dinner is a very bad idea if I only have one kidney. So my wife asks Dr. “O” about what our new diet should be, “Are there things that Dean should be eating to be healthier?”

He says, I believe knowing that I do not smoke, “The damage done by smoking one cigarette is way more than the amount ‘good’ you can get out of some magic juice or herbal cancer preventive.”

And, I remembered this picture I had made earlier, on the morning of the appointment.

That’s the story. Dr. “O” went on with a tale of a patient that pulled out a bottle of juice that was going to keep him (her) healthy. His idea is that my diet should be sensible. Keeping in mind that this was from an oncologist’s point of view, what Dr. “O” said is that months of good antioxidants are not going to offset the damage done by one trip off the map.

So I need to be good, always – not great most of the time and rotten once in a while.

Yesterday, when I was supposed to post this tale, I slept late. For the first time, I went to the mall to walk – 5 laps at Paradise Valley Mall are 3 miles, I think. Afterwards, I ran an errand and did the grocery shopping, and then my daughter’s dance recital was in the evening. She danced beautifully.

I walked 3 1/4 miles this morning in the heat. While walking, I had this idea that my body is infrastructure. This is probably so obvious as to not warrant words, but this is the picture I made.

The Oncologist

Well the short version of the story is that it appears that I will not need chemotherapy.

Let’s review. The pelvis of the kidney and the inside of both the ureter and the bladder are the same tissue. The diseased kidney, the ureter and a small part of the bladder have been removed. The bladder is downstream from the kidney. For that reason, any chemo treatment would essentially be for bladder cancer.

Dr. “O” (for oncologist) explained that it is very difficult to effectively get the drugs into a patient’s urine. That fact, if my weak understanding is correct, is the source of the Catch-22, which I mentioned at the end of the last post. The chemo drugs have to get past the kidney to be effective. The kidney basically wants to filter everything out. In order to get the drugs past the kidney, if the dosages are strong, the kidney takes a beating. That is a problem if you only have one kidney left.

Or if they protect the kidney with a lower dosage, the chemo isn’t very effective, and it doesn’t really make sense to take the chance of damaging the kidney.

The end of the short story is that for the last nine mornings, I’ve been walking again. I believe this morning’s average speed, over my two-mile route, was above 3 miles per hour. I think I was just at 2 miles per hour when I started my one-mile walks last week.

This was my saline and pain killer IV rack when I was in the hospital. I was actually disconnected from both at this point.

I’ve been thinking about the long story since Monday’s appointment. It is not really well formed in my mind, so I guess I’d better just try to write it down. It’s actually three stories. The first was Dr. “O’s” attention to making sure I understood his perspective on the issue. The second is a curious tale that occurred when he answered my wife’s question about diet. Finally after meeting Dr. “O,” I was really taken by the different personalities of my doctors through this process. So I’ll write for a while and see if this begins to make sense.

Dr. “O’s” native language was not English. That said, of all the doctors I have encountered in this process, I believe that he offered the clearest explanation of his medical point of view. Maybe his clarity was due to his language challenges.

My wife teaches primary art and music to many students for whom English is a second language. Driving home from the appointment, she pointed out that Dr. “O” was very careful to explain things in multiple ways. He started with an explanation of what his concerns about the pathology report was; he drew a picture of my kidney, with detail of its renal pelvis, a cyst that had been there all along, the carcinoma, and the ureter; he pointed to the picture as he described the pathology concerns in at least two different ways; and then he summarized clearly before he asked gently, “This is not the information that you were expecting. Do you have any questions?”

In some ways it was exactly the explanation I had hoped for. The probabilities were made clear – chemotherapy only improves the survival rate marginally. Damage to the kidney is a real risk. He even explained that what we would be treating is actually bladder cancer, because my bladder is the only thing downstream from where my kidney used to be. And one of the problems with chemotherapy treatment of bladder cancer is the fact that bladders fill, empty and refill with urine.

I guess what I didn’t expect was the sudden clarity about the uncertainty of not knowing what lay ahead. If the cancer does come back, will I be facing chemotherapy’s ineffectiveness with the bladder or the loss of my bladder or some other unknown treatment (which is to say, a frightening one).

That clarity is frightening.

I’m walking, however. And I am doing the things I’m supposed to do to take care of myself. I believe I’m going to be in the lucky 80% to 90% who have no recurrence of this cancer.

And this leads us to part two of my long-story – the curiosity that occurred when Dr. “O” answered my wife’s question about diet. But that shall have to wait until tomorrow. It’s been written, so I promise it will be there.

Catch-22

Transitional cell carcinoma of the renal pelvis

I'm doing as well as can be expected. The pathology report indicated that the cancer was just in the kidney. It was a "high grade" cancer, meaning that it was aggressive, and it had grown throughout the kidney, but there was no evidence that it had grown beyond the kidney.

I got the drainage tube and catheter out Monday, June 2. I'm very happy about that. My stomach muscles are getting better, but getting up from bed is still no fun.

At this point the most uncomfortable parts are the incision sites themselves. A couple of them are situated right where the band of my pants falls. I've been wearing a pair of giant underwear and a pair of large, drawstring pajama bottoms that I can pull up above my stomach. I look very handsome - NOT!

Given that I wear my weird pants or shorts above my tummy, it has been getting a little easier to walk around. I took four evening walks right after coming home from the hospital, before I got completely discouraged with the catheter. Each of the last three mornings, now that I have the tubes out, I've walked more than a mile around the neighborhood, so I must be doing pretty well.

The surgeon wants me on a very low fat diet. During surgery, he decided to cut some of the fat tissue next to the aorta rather than cut closer to the kidney. That apparently included some of the system for distributing lipids. Starting the morning after surgery, for six meals, I was on a normal diet in the hospital - if you can call hospital food "normal."



Then a bunch of lipids came out of my drainage tube, so it was good-bye regular food. I was back on a liquid diet for the next six days. (Regarding my liquid diet, Steve left this link in a comment to my last post; check it out.)

Now I'm eating brown rice, leafy vegetables, and fat-free cooked veggies and staying well below 10 grams of fat a day. That will have be it for the next 2 weeks or so, but it's a pleasure compared to a liquid diet.

My wife probably has a different opinion as to how pleased I am, however.

If I understood the surgeon correctly, the lipid distribution system he cut was part of the lymphatic system. The portion he cut out seems to have rebuilt itself. That was the purpose of the liquid diet and now, keeping my fat intake low. The pathology report didn't mention any abnormalities with the fat cells he cut, so I have to believe that the lymph nodes were fine

I see an oncologist this coming Monday to discuss chemotherapy. The "catch-22" is that the drugs used in chemo are very tough on a kidney, which is a real problem with just one left - so we'll see.