Tuesday, January 16, 2018

Bladder Cancer Facts and Realities

Just because I was interested in this type of thing, I found the American Cancer Society has some facts and figures regarding these types of cancer.

About 62,000 men are affected each year, 18,000 women.
About 12,520 deaths in men. Three times that of women, 4720.
More likely a white man's aliment, over 55 average diagnosis is 73.
Men have a 1 in 27 chance of developing this type of cancer.  Women have a 1 in 89 chance.
50% are confined to the bladder, inner layer. 1 in 3 will have invaded further but still in the bladder, most of the remaining cases have spread outside the bladder and 4% of the cases are spread to distant sites in the body.

General survival rates run about 77% at 5 years for all stages. 70% at 10 years and 65% at 15 years.

Stage 0 is 98% survival
Stage 1 is 88%
Stage 2 is 63%
Stage 3 is 46%
Stage 5 which has spread throughout the body is only 15%.

I am currently diagnosed at T1 without looking at my lymph nodes which will be taken during the surgery, biopsied after the surgery.

So according to Tim McGraw, what happens when you get that kind of news? Well, I really have no interest in going sky diving or riding a bull named Fu Manchu. I think we tend to think romantically about what we could do or spend to see specialists. In reality, I appreciate everyone's concern but I have no interest in going to Mayo (nor could I afford it) or Rochester, NY.  I am going to trust what God has in store for me here in Omaha.

I am not about to take about to take a trip around the world but am interested in having the most minimal impact of my life and my family's. I don't like a lot of fuss or bother and chose my diversion accordingly. I tend to look for low maintenance, easy care solutions with lower overall risks.

I do intend however, to take the time off allotted to me and not rush back to work or even think about work. We have had plenty of time over the years to investigate the "What if Tom gets hit by a bus" scenario and nothing came of it so people will have to learn to survive without me for a bit. It will be a little rough because folks have no idea how far my reach goes in getting the daily machine to operate.

Thursday, January 11, 2018

Consults and Doctor Visits.....

Finally, the day arrived for me to speak to the surgeon and oncologist in detail. Mackenzie and Brenda came with me today after Mackenzie had stopped by my office and brought me some décor.

There was a discussion early this morning with the Tumor board where my case was discussed and decisions were made on my behalf.  The team consists of surgeons, radiologists,  oncologists and pathologists. All my case information was reviewed in detail and the final word was that the bladder has to go.

There was no doubt in our minds that this path was clearly going to be taken but I think a glimmer somewhere inside me hoped for a simple resection. The surgeon visited us at length regarding diversion options (where I am going to pee and how) and left me with a few decisions to make. The surgery is scheduled now for early February and I will need a good 8 weeks off to recuperate and learn my new normal. After the surgeon was done with us, we met a very nice oncologist who discussed possibilities most of which don't apply to me, thank God.

There will be no chemo or radiation unless a lymph node comes back positive which they believe is unlikely. So far so good. Things, believe it or not,  are looking better considering I still have a major surgery to get through and I will have a grand life style change. On the bright side, I can take long road trips and never stop to pee. Right?

Monday, January 8, 2018

On A Cold Winter's Night...

It’s really not even that cold out tonight. Around 40 which is a heatwave compared to recent weeks but I had picked up a few items that needed to be used. Really, there were quite a few things that had to be cooked in the fridge and I am tired and bored with food right now but...this was delicious and easy.  

On hand was a nice leftover 4 ounce block of white cheddar, a smoked beef sausage from Hillshire and a pound of baby fingerling potatoes that were starting to sprout so time was of the essence!

First I roasted the little spuds with salt, pepper and a glug of olive oil. I did this in our our new little Breville toaster oven. After about 25 minutes they were soft and ready to be smashed then added to a greased casserole. Just a little guy big enough for the two of us plus a bit for lunch tomorrow. 

Next I sliced the sausage and gave it a quick sauté in the skillet to add a bit of color. No oil necessary for this, I place these slices on top of the spuds. Grated white sharp Cheddar topped the dish with about a half cup of cream then back into the little toaster oven for 20 minutes again. The top bubbly and  browned, just what we needed for a quick bite on a winter night. The cream had thickened and mingled with the cheese. The tender potatoes against the smoky sausage...yum. 

Sunday, January 7, 2018

Eating Omaha..Over Easy Redux

We are unforgiving patrons and when things go wrong we just don't go back. Such is the case here, we had a bad experience 5 years ago and never returned. I mean really bad. Would not seat us, no coffee refills etc.

We met Mackenzie and my sister and brother-in-law today for another shot. Smart move as things have changed. Prompt seating, great service (but my water was not refilled) and delicious food. A new menu and we did not try the homemade pop tart that was a big disappointment last time.

This time,  chicken and waffles were amazing. Crispy chicken and a delicious puff waffle with a smattering of fresh fruit. The eggs benidect that Mackenzie ordered looked great with real hollandaise and Brenda and Ellen ordered an Egg Boat that looked tasty. Mark had a breakfast burrito that looked yummy and disappeared quickly so it must have been good.

All in all, highly recommended but it’s a tiny place so be prepared to wait a few minutes as folks linger over that last cup of Joe.

Tuesday, January 2, 2018

alla Vodka

Our meatless night tonight called for pasta. I stopped briefly at the store on my way home to pick up some key ingredients then proceeded with an easy and very tasty sauce.

So simple and the addition of the vodka adds an extra pull on that tomato flavor. I used the Barilla thick spaghetti although the dish is traditionally made with penne. It is sublime and oh so easy.

Vodka Sauce

Medium onion, chopped
2 Tbls butter
1 clove of garlic, minced
1 28 ounce can tomatoes. I love Glen Muir brand and used crushed, fire roasted.
A few ounces of plain vodka, Sobieski is the house brand here.
1/3 to 1/2 cup cream

Sauté the onion in butter till lightly brown then add the garlic. A pinch of salt helps breakdown the onions. Add the tomatoes and vodka and simmer for 15 minutes. Taste and adjust the seasoning. A bit of pepper and more salt, no doubt then add the cream. Serve over the cooked pasta with a good grating of Parmesan. Simple and delightful.

Monday, January 1, 2018

Celebrating New Year's

Fried olives anyone? We had quite the eating adventure this year and if you were invited ad didn't show, you missed out. I had a nice half a roast NY strip sliced thin for sliders with horseradish cream. Stone Crab claws that were phenominal. Assorted charcuterie. Bacon candy and old fashioned Rotel and velveeta dip.  Plenty of good food, good drink as there is always a well stocked liquor in our house, especially if you're a fan of gin and scotch. Champagne was flowing and babies were fussing. Happy New Year's everyone! 

Fried olives
Beaten egg
Panko set up in 3 stations
1 jar of stuffed olives  we used blue cheese

Roll the wet olive in flour, then egg and finally panko
Fry in shalow hit oil till golden and enjoy hot and melty. 


Sunday, December 31, 2017

Clarification about my posting in the coming weeks....

My blog is a lot about what I feel personally that I generally can’t express in person. A lot of random thoughts that I can organize and display in proper format. A lot of revisions and 2nd  thoughts so what you may have read originally, I may have edited again for a better clarity.  My blog and writing, as terrible as it is, is my meditation. My chance to set my thoughts straight and calm my mind in a very public setting.

Why am I writing about such personal things?

Not to garner sympathy or a Go Fund Me page. While I appreciate the thoughts and prayers and even the unsolicited advice, this is about educating myself about making things better for healthcare and patients as an active participant in the system. An insiders point of view. An active observer. My perceptions are my own colored with my idealism regarding medical care. What I hope to see, how I am disappointed or elated at what I end up with.

Here is what I know for sure...don’t get sick at the end of the year. It’s like a fire sale with folks meeting their deductible and cashing in on all the elective tests and procedures they can. I also am guilty of this putting off tests and exams until after our deductible was met and sadly I met that rather early this year and will again this upcoming year. Like you have any control at all over this.

The reality is that things don’t hurt as bad as I thought they might. I always look to the hours post procedure to get through the present situation that I dread. Once the IV is in, the part I hate the worst, I know that some nice CRNA is going to give me a little happy medicine and I will wake on the other side and deal with the aftermath at that time. I rarely take pain meds for more than the first day post op. I just don’t need it but I am unique in that manner. I am a light weight regarding meds and very little puts me way out. I am fortunate in that regard.

The guilt. How do you interpret what medicine asks or says to you without taking it as an accusation of blame? I struggle with this. Yes, I have smoked in the past and enjoy and occasional cigar. Am I paying for my transgressions? It’s an easy jump, easier than you can imagine. I am not going there, I can’t. It’s not fair but what is fair these days?

I will express my frustrations, pray for patience and carry on no matter what is coming knowing I have seen patients endure much worse but, always will wonder why?  I think maybe it’s more important to pray for acceptance for what comes. I know a few folks that have lived with my condition for years, quietly, unnoticed, doing well. It does not define them nor will it me. But I will talk about it if asked because it’s the way to help others.

Yes I am still cooking.

Saturday, December 30, 2017

This Year’s Birthday Gift....

...was a CT scan. Sadly I have been passing blood in my urine sporadically for a few weeks and had to have it checked out. The CT showed areas of concern and was followed by a cystoscope in a urology office. That also showed a need for further investigation.

I work in medicine and have my whole career. Navigating the system is a nightmare despite claims of  “Extraordinary Care”, no one really gives a crap about you personally unless it’s about payment. Your urgency is not their urgency and you are liable to be speaking to people who have little medical knowledge and are clueless about your plight. I have met some really nice, but aloof, co-workers as well as some folks that probably should not have a job greeting people. I understand now that the public applies these ideas about’Extraordinary Care’ to the whole process from the cleaning team to the physician. In reality, the person that answers the phone at your physician’s office is unfairly lumped into this so any break in the link of this chain affects the system as a whole and shades your perceptions.

I have discovered that it all moves at a glacier pace taking weeks to get things done where it could be days. Labs that don’t post to EPIC, reports that never reach the primary physician. I have gone and retrieved labs after signing releases then faxed my own results to those who need to see them. There are parts of the system that are really nonsensical. Despite this, I have had some fantastic preop  and post op nurses and great CRNAs that were reassuring and lovely. People actually involved in your care are great not unlike the nurses And tech professionals I work or am acquainted with everyday. Despite their schedule or late hour, they are always pleasant and seem to go out of their way to accommodate.

The process of diagnosis is painstakingly slow. You would think scans and testing would be done before consults so a discussion could be had but in reality everything seems to happen in reverse order. It takes weeks to get a visit and then another week to have the exam and then another to get a follow up for discussion. It’s really frustrating and I know how to press things a bit. What about a regular old civilian? My Lord, what do they go through? I am not sure why the progression is so linear seeming unable to veer from some disposed path.

After the CT, I had an ultrasound to clarify the results. A $4000 scan whose results need clarifying? Makes no sense at all. So the ultrasound ruled out kidney cancer which turned out to be a cyst but shed no real light on my congenital ureter defect and where, what is now considered cancer, in my mind, is located. Ureteral cancer is bad. Very bad. Losing a kidney and bladder bad.

Now onto the biopsy. Another week goes by after the consult visit to the biopsy. While I am under, the urologist slips a stent in my right ureter that curls up in my kidney and ends in a pigtail in my bladder. Probably the most irritating implant known to man. I feel a constant vague fullness and “sticking” sensation 24 hours a day and the urgency to void makes me dash to the toilet no matter what. The very act of voiding now sets off peristaltic waves that make need to hold on the walls for support, the pain is so intense. Then it passes till the next urge. The good news is, the ureter is clean, no cancer there.

I am diagnosed with a congenital condition, Hutch diverticula, which is close to my right ureter (the tube that delivers urine from the kidney to the bladder). The stent prevents the ureter from shutting down since he removed a tumor close to its location in the diverticula.  I will now pass a lot of bright red blood for the following weeks until the next phase of treatment. That depends on the pathology results.

The pathology news is devastating. While the cancer did not invade the muscular wall of the bladder, it happens to be a sarcoma type cancer known to be aggressive and resistant to chemo. My urologist calls to deliver news neither of us expected. I will likely lose my bladder so as not to ‘seed’ cancer cells into my belly if he were to open the bladder in situ. My surgeon heads out of town. A follow up in a few weeks. What?  So now it’s waiting, thinking, crying and praying. Life without my bladder will be like...what? Part of my next visit is to meet with the oncologist also. Is this the primary site? Has it spread? My chest X-ray was clear, what does that even mean? The ultrasound showed normal abdominal organs. Ok, but am I clear?

More to follow....

Wednesday, December 6, 2017

A Tuesday Nosh as a Meal

Another Tuesday night and we have had our share of salmon lately. I still have a few bags of shrimp in the freezer as well as bread dough rising in the fridge that has to be baked tonight. Not wanting a lot of pasta or rice carbs I opted for a snack approach to dinner. Light yet satisfying. A French loaf, spicy Bloody Mary shrimps and a cheese assortment. A nice dipping oil for the warm, fresh bread and we are in business. Brenda worked late Tuesday and the bread was just crusting up when she walked in the door. The recipe for the shrimp  here:

Monday, November 27, 2017

Irish Stew at the Rainbow House

We have cooked for this charity before but this is our first time flying as a solo family. Mackenzie signed us up for the Sunday after Thanksgiving and it came upon us in a flash. The last thing on my mind was cooking again after all that fuss a few days ago. I had started buying groceries a few weeks ago as the chuck was on sale and I had to save some money. Cooking for 45 can be pricey.
I started thinking about my Instant Pot and how this could help shave some kitchen time off the day and if I borrowed Mackenzie's, all the better.  I had 12 pounds of chuck roast that has to be fork tender.  Potatoes and carrots in mass that needs to be dealt with and a very large 10 gallon pot to cook in ( that won't fit in the fridge). Brenda was helping me contain the considerable mess I was making. Browning that much beef is a greasy mess but worth the tasty results.
I decided to stage the cooking, deconstructing the recipe and then assembling the finished parts. I can control all the variables this way and make sure each part adds up to a delicious whole. Seasoning along the way.

Job one...prepping everything. I started with onions on the stove top. Cooking them along with garlic and celery, adding flour and broth to make the base of the stew. Seasonings and umami flair to deepen the flavors and concentrate the base for later diluting. Then on to the meat prep. Cubing the 12 pounds of chuck then browning in a cast iron skillet and setting 6 pounds into each Instant Pot on a bed of mushrooms and 2 cups of water. 45 minutes with Natural Pressure Release.  Lastly was peeling 3 pounds of carrots and 7 pounds of russets. Brenda made a great Sous chef for me as my hands got weary of all the peeling. I used the Instant pot to cook those also but 4 minutes was too long and 3 minutes was too long. Not sure where to go with those in the future but they were softer than I cared for. They still were great in the final product though.

Guinness Irish Stew for 45

12 pounds of chuck roast, cubed into 2 inch pieces, trimmed of excess fat and gristle
3 tbl oil
1 cup red wine for deglazing pan
1 pound mushrooms, sliced, divided
4 cups of water, divided
5 large onions, chopped
1 garlic bulb minced
1 pound celery, chopped with leaves
1/2 cup oil
3/4 cup flour
2 - 32 oz cartons of Chicken broth (I used low sodium)  I used 4 total
2 tbls dried thyme
1 tbls dried Rosemary
3 bay leaves
2 tbls salt
1 tbls pepper
1/4 cup fish sauce
1/4 cup Soy Sauce
2 tbls Better Than Bullion, Roast Beef flavor.
1 small can tomato paste
Kitchen Bouquet
3 cans of Guinness beer
3 pounds of carrots, peeled and 1 inch chunks.
7 pounds russet potatoes, peeled and uniformly cut.

I browned the beef in batches and added them to a 8 ounce bed of mushrooms in each pot.
I added about 2 cups of water to each pot and processed them for 45 minutes with a natural pressure release.
I used an 8 quart stock pot to sauté the onions in oil, adding the garlic and celery as they cooked. The dried herbs went in then the flour. After cooking for a few minutes, I added 2 cartons of the broth and a bit of Kitchen Bouquet to color the sauce a bit. I added the Soy sauce and fish sauce.
After setting aside the beef, I skimmed the broth, reserved the fat, and added the broth and cooked mushrooms to the stock pot. Add the beer, tomato paste and stir, allowing it to cook a bit. Taste and adjust the seasoning. The pot should be full now.
I checked the overall texture for a nice body but I can adjust the thickness of the gravy latter in the second part assembly.  Everything in the fridge until the main event.

The day of the event, I broke out the 10 gallon pot. I had the reserve fat I skimmed the beef broth from the IP and added the fat from the cooled base stock. I had about 1 cup of fat that went into the large pot. After heating up the fat,  I added an additional cup of flour, cooked for several minutes then added 2 more cartons of chicken stock. This thickened up after coming to a boil then I added the contents of the stock pot and adjusted the seasoning. The texture was perfect, like a thin gravy.  To this I added the picked over beef, removing any excess fat and objectionable content. Then the cooked carrots and potatoes. A good stir and we packed up for the Rainbow House.

We served the fine folks at the Rainbow House from crock pots, to keep everything warm with a nice side salad and French baguettes. It was warm and inviting and the staff remembered the stew fondly  from March when we had made it for St. Patrick's day. Mackenzie made some great brownies (especially the salted caramel ones).


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