This Week 07-17-09

If you are here for the cancer story, page all the way to the bottom and work your way up. Feel free to e-mail me! My e-mail is cheesie_67@yahoo.com. It gets boring typing all this sh*t up with no feedback.

Cancer Section

Inspiration of the Week

Nothing jumped out this week.

Research Note

Nothing jumped out this week.

American Cheese

Movie Review

Revolutionary Road (click) I downloaded this movie on the Xbox because some reviewers gave it good marks. I thought it sucked. The acting by Leonardo Dicaprio and Kate Winslett was great. But I did not buy the whole whoa-is-me-my-life-sucks-because-I-am-in-the-suburbs stick. Two burgers out of four.

Undercooked Juan Uribe (click) Giant's pitcher Jonathan Sanchez threw a no-hitter last week. But, it was almost a perfect game. Uribe blew the bid for perfection with an error in the eighth. As Butthead would say, what a Buttmunch.

Undercooked Kathleen Kennedy Townsend (click) Townsend took Obama worship to the next level by claiming that Obama represents Catholics better than the Pope. I guess in her mind, he is holier than the pope. It is one thing to disagree with the Pope. So be it. But, the whole point of the Catholic church is the Pope is in charge. It is not a democracy driven by opinion polls. I am not defending the church here. If you disagree with its stands, then leave. That is what the reformation was all about. But the claim that Obama represents Catholics better than the Pope is asinine.

Undercooked Taxes If the House health care reform plan goes through, some people in New York City will be paying 57 percent of what they make in federal state and local taxes. Obviously this does not effect me. But, when is enough enough?

Undercooked Rushed Legislation First the Democratic Leadership pushed the cap and trade bill through. Supposedly most of the congressmen did not even have a chance to read the last 300 pages of amendments. Now they are trying to completely overhaul health care system in the country by August. What is the hurry? Isn't it more important to get it right?

Well Done Apollo 11 It has now been 40 years. NASA is still struggling to live up to the legacy of one of mankind's greatest achievements.

Undercooked Baseball All-Star Game Did not watch it. Did not care.

Scans Were Fine

Title says it all. Four years now. Walk on!

Relay For Life

Relay for Life


I attended the Relay for Life last weekend in Avon Lake. It was pretty neat. It had a very fun, carnival atmosphere during the day. The luminary ceremony at night was very touching. They read off the names of loved ones to be remembered. They also had the names of people written on candles around the track and in the adjacent stands. I highly recommend that you get to a Relay for Life Ceremony next time it happens in your area. Your don't have to be on a team to contribute.

Meaning Of Life

I have done a lot of thinking about stuff since 2005. One of the main thoughts was about what my life would mean when it was over. One of the best ideas on this subject was a quote from Jackie Robinson,

"A life is not important except in the impact it has on other lives."

Kidney Function Update

Well, my scans are a year apart now. But my kidney function tests are still on six month intervals. So, my kidney got center stage for the first time. These tests are more routine than those G** D*** scans. The numbers should not change radically.

Anyway, since the surgery I have been testing at Stage III kidney disease. Low even considering the loss of one kidney. This does not mean I am in any immediate danger. And, it is having absolutely no effect on my life right now. But , it does mean I have to watch things that would damage my kidney further. The big problem for me is blood pressure. And, there is a long term threat of kidney failure.

Since my last set of tests I have made an active effort to get myself in tip top shape. I am down to 170 lbs for the first time since high school. I have also changed my weight routine to emphasize more repetitions in order to lose muscle mass. Anyway, I am happy to report that the function numbers did show some improvement. It might even be enough to move me from Stage III to Stage II disease. Note my kidney did not get better. But, there is less of me for the kidney to clean up after. So, the balance is better.

There is a funny story about this. At my last oncologist check-up my doctor did not like my blood pressure. He read me the riot act about how I was risking dialysis and was not doing myself any favors. So, I went to my primary care doctor and upped my BP meds. I then starting passing out everywhere. When I checked my BP, it was 105/55. I dropped back to my original med settings.

What happened? Well, they check my BP at the onc's office right before they give me the test results that check for the cancer's return. So, it they basically say, 'We are going to let you know if our tests indicate you are going to die. But first, let's check your blood pressure." I think the only thing that number proves is the highest possible value the BP could be. Now I am checking it everyday and will bring those number with me to my next appointment in June.

Happy New Year!

Happy New Year!!

I just wanted to wish anyone out there who stumbled onto this blog a Happy 2009. I try to not be preachy on this blog. One thing I hated back in 2005 was unsolicited advice. But, I do have one suggestion. It is one thing I have learned from 2005. If you have any negative energy in your life that you are creating drop it. Any petty rivalries, let them go. Any personal jealousies, forget about them. Any selfish things you are doing, stop them. The list goes on. These things act like weights. In good times we can carry them along. In bad times they can completely pin us down. But why carry them in either time? Try to extend positive energy to ever personal encounter you have. No matter what type of response you are getting.

So let's all make a resolution to give out nothing but positive energy in 2009!!!

Here I Go Again

Well, it is that time again. Scans for tumors. Blood work for kidney function. Results on Tuesday. Not much to say. Besides the fact I have really grown to hate that f***ing machine!

Radiology + Statistics = Trouble

New Model Predicts Whether Patients Will Be Free Of Renal Cancer 12 Years After Initial Treatment (click) This sounds like great research. NOT! This is complete bullsh*t. The type of research combines two of my least favorite scientific fields – radiology and statistics – to guide people in making life and death decisions based on only CT scans obtained BEFORE surgery.

I am sorry, this one hits way to close to home. When I was first diagnosed, bad radiology almost resulted in my death. The first problem was with my first CT scan. The doctors initially thought the tumor was had invaded my spleen and pancreas. Local invasion means stage IV kidney cancer. They then sent me for a chest CT scan. That scan revealed all sorts of crap. There were numerous lymph nodes that were questionable, a spot on my lung, and a six inch long ill-defined mass sitting next to my aorta. That scan also meant stage IV kidney cancer. The doctors were debating whether or not to even do the surgery. So, based on the CT reports, some off them wanted to leave the tumor in there. The doctors I ended up with decided just to focus on one step at time. Guess what? The tumor itself was not attached to anything besides the kidney. It popped right out. The mass next to my aorta disappeared on my next CT scan. I still don’t fully understand that one. And, the other crap in my chest is still there but has not changed in two and a half years. It is not cancer.

Anyway, I took a look at the model. I ignored the stuff that indicated Stage IV disease to see how it would effect my pre-surgery diagnosis. My tumor was 24 cm’s. So I got the full credit of 100 pt here. I am male, so I get five bonus points here. The tumor was necrotic. Five more points. The presentation was localized. Plus fifteen. Total score 125. According to the chart, that gives me twelve year survival odds of about 25% at the time of the surgery. And that number only comes out AFTER ignoring the signs stage IV disease. This is why the doctors were saying my chances were not good even if they could get the tumor out and the CT scans had come back clean.

What does all this mean? I think it means absolutely nothing. My current doctors think I have a great chance right now. They never focused on the early odds anyway. They just plowed ahead. Combining radiology with statistical predictions is an INCREDIBLY STUPID IDEA when dealing with cancer!! It almost killed me.

KIDNEY-ONC

The son of a kidney cancer patient stumbled on my blog this week. That got me thinking. This thing is supposed to be more than just my endless ramblings. It is also meant to reach out to other kidney cancer patients. One resource I have not mentioned is the kidney cancer support list, [KIDNEY-ONC]. If you, a family member, or close friend, has been diagnosed with kidney cancer, it is an excellent place to go. No matter what the circumstances of your individual case, there is probably someone their with a similar situation. The group is also up to date on all the latest treatment options.

The information to join can be found here (click). But, two words of caution. First, there is a lot of traffic. You will need to segregate these e-mail’s from you other stuff. If you do not, your personal e-mail will get lost in the deluge. Second, keep in mind that this is list is about cancer. There is not always a happy ending.

Thin Ice

Hey Heather. Good to hear from you! Hope all is well!I don’t know about inner strength. It simply is what it is and was what it was. Heck, if you take a step back all that ever really happened to me was the initial surgery. Everything else was doctors make bad predictions about my future combined with crappy radiological reports. (I never got an explanation for the huge mass that was reported in my chest on my first cat scan.) Because of the nature of kidney cancer -- there are no effective adjuvant treatments -- I did not even have to go through chemo or radiation. The basic arch of the story so far has been they found it and took it out. It has then been up to me deal with it. It has taught me a lot. Maybe it was the perfect lesson for someone with borderline anxiety issues who is also a control freak. It was like God was saying, "You like to worry?. OK, I'll give you something real to worry about. You like to try to control things? Control this. "

It is like Conan said, "That which does not kill us makes us stronger." That statement is so true of cancer.

My wife likes to say that control is an illusion. She is right. You never realize how thin the ice we are all skating on really is until it starts to crack.
e it working. Notice the use of the work think.

Scans Were Fine

Title says it all. There are a couple of new lung UFO's. But they are very small. My onc is not worried about them at all. I found from other patients it is not unusual for small crap to appear on occasion in the lungs. Gotta love radiologists:)

Onc says we can go to yearly scans after July. Thank God. I hat this sh*t.

Ball and Chain

This week it is about me. Went in for my six month check up today. I get the results next Tuesday. Typical sh*t. CT scan to look for tumors. Blood work to check the kidney function. I doing well outside of the scan. But, no matter how long it goes on, I will NEVER get used to this period. The time between getting the scans taken and the actual result feels just like 2005. The news group I belong to refers to it as Scanxiety. I hate having this Ball and Chain that pops up every six months. But, we all to deal with some type of sh*t in our lives. Was it Proust who said we only really learn when we struggle? This experience has taught me a lot.

Big 4-0 Big Deal

I turn forty this week. My thoughts? Big f***ing deal. I have no deep thoughts or cares about this “milestone”. Besides, of course, the fact I am glad I did not die at age 37.

One thing that has always amused me is the mid-life crisis. If you have time for a mid-life crisis you need to count your blessings. It probably means you don’t have a real crisis going on in your life. Don’t get me wrong. I would love to be twenty-two again. I remember when Jackpot and I would play basketball all day, drink all night, and then repeat it all the next day. No way I could keep up that pace now if I wanted too. I simply get up everyday and try to figure out how to make it meaningful. A friend of mine was complaining about getting old. Maybe it does suck a little bit. But you know what? It beats the alternative.

Let’s Get Physical

There is one thing I do know about. And, if you do get nothing else out of this blog, please remember this: get a physical with all the appropriate screenings that are recommended for your age. The reason I am bringing this up is because of John Edwards. He is proposing that mandatory health screenings be a requirement for people to get into to his universal health plan. Why? Because having patients getting regular checkups results in lower costs. Diseases will discovered earlier when they can either be cured or managed. Note, less costly for the provider also means a better quality of life, maybe even simple survival, for the patient. Many diseases, such as cancer, only become obvious once they are in the final stages. Catching them early means lower cost to the system. It can also mean life or death to the patient.

Note, the screenings do not catch everything. I had a full physical in October of 2004. I passed with flying colors. At that time I had a huge tumor in my kidney. Am I mad that the physical missed it? No, you cannot control everything. But, I am glad I had the physical. During the worst of 2005, I was at least able to say that this did not happen because I was afraid to go to the doctor. I did all I could to protect myself and my family.

I am not in favor of Edwards health plan in general. What is the government going to do? Arrest you and send you to the doctor in handcuffs? But, you should not wait for a government mandate to get the appropriate tests. Time for a physical? Do it!! Time for a mammogram? Do it!! Time for a colonoscopy? Do it!!! (Maybe you should treat yourself after that one.) If they find something, it is more likely that it will be in the early stages and be very curable and manageable! Do it for yourself. And, if you have a family, do it for them!

Lasalle Distance Classic

This week I ran the Lasalle Distance Half Marathon in Chicago. It was a fun time. I ran it with my brother and a bunch of cousins. The race started bright and early at 6:30. The first part of the race wrapped around downtown. It was very scenic. We then turned south on the lake shore and ran by Soldier Field. Then, there was a final turn to the north and back to the finish.

I don’t know if it was the weather, but I was really fighting it in this race. I picked out my cancer Relay for Life Shirt to wear. By mile four I was having trouble with the humidity, so I took it off. I carried it for a while. But that became annoying due to its weight. I finally threw it out as we ran under the McCormick Center. I did not want to. That shirt was special to me.

I finished in a time of 1:51:20. It was not near my best. But, this one was a real struggle. And, I beat my cousins and my brother. I think this race proved one thing for sure. Irish people should NOT be allowed to take their shirts off in public. Note that we started about three and a half minutes after the race gun went off. That is why my chip time does not match the race clock.

Still Clean

Scans are still good. It is kinda funny. My blood pressure was through the roof. I told them if they really want to get an accurate reading they should take it AFTER THEY GIVE ME THE TEST RESULTS!

The Darkside

The Darkside

People close to me may have noticed that I slid backwards a little heading into this one. The NBA Finals being tied to my test results. That made a lot of sense, didn’t it? I was not thinking positively. Doubt was creeping in. Right after doubt comes fear.

One thing I can compare this to, as corny as it sounds, is that evil tree in the Empire Strikes Back. Yoda tells Luke he must go in but he cannot be afraid. He tells Luke that the fear will destroy him. But, Luke cannot let go of his fear. He goes inside and confronts Darth Vader. After he defeats Vader, Darth’s mask comes off and Luke sees that it is his face.

That is how I feel. Make no mistake about it. I am not fighting cancer right now. It is looking more and more like the medical story of the crisis ended in 2005. What I am fighting is myself. When I think positively I am fine. But when I give in to the darkside of my personality I quickly end up in a bad place. I get angry, hard to deal with, and almost totally non-functional.

Note this has spilled into other aspects of my life. I had a real problem with anxiety before 2005. That is almost gone. Heck, after being told you have terminal cancer what else is there? I used to get ahead of myself and try to figure out what could possible go wrong. I would then worry like crazy. This situation has taught me to let life come to me. Don’t go to the stress. Let the stress come to you. Don’t assume the worst when confronted by unknowns. Most of the time you will be wrong. If something really is a problem, you will know soon enough. JUST THINK POSITIVELY! Cancer has taught me that lesson. And I am grateful for it.

There is also another major lesson that I learned over the past two years. But, that is more unique to my situation. I have not put it out there in this forum. Oh well, if there ever is Cheeseburgerstogo director’s cut...

Feeling Alive

I ran the Cleveland Half Marathon last weekend. It was a great race. The weather was perfect. The race snaked around most of the major sites in downtown Cleveland. (Yes, there are sites in downtown Cleveland.) I ran a good race. I finished in 1:47:43 with a 10k split of 50:50 (click). That means my pace was nearly constant at 8:12/mile. It was a good time for me. And, even better, this time my MP3 did not get stuck on 38 special.

I love to run these days. It makes me feel alive. The last time they checked my kidney function, it was in the beginning stages of chronic kidney disease. Being able to run in these races makes me feel like it is going to be OK. That I can do things now like before. Heck, I am probably in the best shape of my life right now; even with the kidney issue. One of the many contradictions of these crazy times.

My next goal will be to try to get my pace time down to 8:00/mile for the entire race.

Note to Annie. I am gunning for you.

Not One Of My Better Moments

The family and I went down to Myrtle Beach for Spring Break last week. We had a great time. It was made even better by knowing that it was snowing like crazy back in Cleveland. It was cold during the first part of the week. But there was plenty of indoor touristy stuff to do. The second part of the week we hung out at the pool and the beach. One note, the Atlantic surf is much more tame than the Pacific surf. Not as much fun to play in.

Anyway, while we were there we met up with Sandy’s family. Her sister-in-law’s family owns a vineyard and they make their own wine. Me and Sandy’s sister-in-law’s brother really got going. Before I new it, I was blitzed out of my mind. The next morning, Easter, I was sick as a dog. Everyone met up for church. My kid’s cousins asked if I had the flu. My eight year old daughter said no, that I was just drunk.

This was obviously not one of my better moments. I am not a big drinker. That was the first time I had done that in a while. But, I am through with alcohol. I NEVER want to be in that situation with my kids again.

No Whammies!

And STOP. No whammies. Congratulations, you won a clean scan and a big screen HDTV. OK, I have not convinced Sandy yet to buy the TV. But, the scans were good. My doctor is now comfortable enough to go with a six month spacing. One note. As we were talking I asked my doctor if he had ever seen a tumor my size. He said that he has seen some larger. But mine was the largest he has seen that was successfully removed.

More later.

These Dreams

Press Your Luck

It is that time again. I go in on Tuesday for the results of my last scans. I have been doing real well. Since the last set of scans I have been feeling REAL positive. As I said, the chances of trouble are small and getting smaller. But, scan week is still completely over-the-top-surreal. I know that as I write this the report has been written and it is somewhere the University Hospital computer systems. Sherman, set the Way Back machine to 2005. It is time to play Press Your Luck again. Big Money. No Whammies.

I had two dreams about this sh*t. In the first, there is a snake after me. It is always right behind me. When I get up, it strikes at the chair I was sitting in. When I go through a door, it strikes at the door as it is shutting. Eventually it gets my arm and start pumping poison into me. In the other, I am at the top of a deep river gorge. The ground gives way and I start to fall. I am sure I am going to die. But, at the last minute I somehow grab a pipe that is sticking out from the side of the gorge. I hang there for a while. I know if I slip I am dead for sure. The walls of the gorge are too steep to stand on. Then I see a woman. She is sitting on the gorge wall. I told her, I can’t do this. She smiled at me told me, yes you can. You just need to relax. I then let go of the pipe and I am able to stand without falling. I then see other people standing and smiling. I then ask the woman if there was a way to get back to the top. She told me to just go over to the right. When I looked to the right, I saw the wall was not steep at all. There was an easy path back to the top.

Little Victories

One thing that sucked about this whole cancer thing was how helpless it made me feel. The only real chance to survive kidney cancer is for it to be removed surgically before it spreads. Basically you have the surgery. If it has/does spreads you are in deep shit. The only thing I could do was wait for the next set of scans. There was nothing that would change the outcome. Chemo and radiation don’t work. So they don’t even bother. There are some new drugs. But, they are for end stage disease and just appear to slow the process down. Another fear I have is the long term effect of losing one kidney. I need to stay in good shape to reduce the load on the surviving kidney. To feel like I was doing something to help out, I decided to try to run a half marathon. I figured if I could do that, it would be a good sign for my overall health. Last Sunday was the event.

The race was along the old tow path of the Erie Canal through the Cuyahoga Valley National park. Let me start of by saying this was Northeast Ohio at its finest. The course was stunning. It was along the Cuyahoga river. The leaves were in full color. And, the weather was great for October. A BEAUTIFUL DAY.

I got out to start the race at 8:00 am. Right before the race someone told me that they timed it with some new fangled chip you put on your shoe. I did not have it. I went back to the car to try to find it. I could not and started the race a couple of minutes late. I caught up with the rest of the race and settled into a comfortable pace. I got to the half way mark and checked my watch. It was a little after 9. The race had started a little late. So, I was half way at about an hour. I wanted to doe the race in under two hours. I told myself to put it all on the course and have nothing left when I was done. I thought to myself, try to pass as many people as I could.

I kept up that pace until the ten mile marker. Then I realized how stupid I was. Instead of focusing on my own pace, I was trying to catch other people. As a result, I was running out of gas. Another problem was with my MP3 player. Because of the Gatorade and water, I could not get the buttons to work anymore. The thing was stuck on my last choice, .38 Special. I like .38 Special. But, if I heard Hold On Loosely one more time I was going to throw the damn thing in the Cuyahoga River. The last three miles were pure hell. Everyone was passing me. My body was screaming to stop. After the 13 mile marker there was a quick loop and then the finish. I looked at the time. The clock said 1:59:37. I’ll be damned, I barely made my goal. I will have to do that again. Except next time I will also pace myself better.

There were people who ran farther and faster than me. But, that felt DAMN good. Here’s to life’s little victories. And, oh yeah, F**k You Kidney Cancer.

Still Clean!

Just got back. Scans look good. It is funny how short those appointments are. Once he says your scans are good we can't get out of there quick enough. The only downer is the last thing you do before you leave is set up you next appointment. But, this one feels different than the last two. Things have looked good since January. I have thought that I am going to survive for a little a while. But now I am starting to feel like I am going to survive. Feeling is better than thinking.

The only minor downer is that my blood pressure is up a little. My doctor wants me to go on some meds to get it down. It could be a long term problem with one kidney. It is GREAT having a long term problem. Anything thing long term is good right now.

Time to Play Wheel of Fortune Again

Wheel of Fortune



Just got finished with my buddy over there. I see my onc on Tuesday. The scans should be fine. I am getting much better and dealing with this sh*t. It is not as terrifying as it was last year. (It is still just as surreal.) The risks are also a lot lower then they were then. This time, when I get the good news on Tuesday, I am going to stay away from the internet and any new statistical prognostic bullsh*t the doctors may have come up with. Got a new study that indicates poor prognosis for renal tumors in people of Celtic decent born in September who have blue eyes? Wow. That looks like good work. Now, go shove it up your ass.

Losing My Fastball

Went to the Joint Propulsion Conference in Sacramento. It was pretty cool. I got to meet with a lot of colleagues I had not seen since before. I love reconnecting with people from all different parts of my past. Looking back and talking, I could tell that I have not been getting as much done as I used too. I am still somewhat effective. But I feel like a pitcher in the seventh inning who is losing his fastball. I am still able to get outs. But, they are not coming as easy as they used too.

It is time to get it back. It is OK to get by with junk ball pitches. But, sometimes you need to power something through. And, there are sometimes when you just need to knock someone down.

Closing the Book on the Scan

I was feeling real good about my last CT scan. Then, I got an e-mail from the Kidney Cancer support group I am on. This person had exactly the same type of cancer as me. Same type, same stage, same grade and just about the same size. After three and a half years of clean scans, he has it back. It is in his liver and spine.

When I read this I thought, how long will it be before I can truly put this behind me? I felt the old mix of depression and anger coming back. Then, the next time I checked my e-mail, I opened a note from someone about the good news about my scans. The second line simply said, Keep keeping POSITIVE!!!!

Good timing. I realized I was not following my own advice. I was drifting back to my old self. The reason they keep scanning me is because there is a chance this might come back. I can’t focus on that negative possibility. I need to focus on all the good news I have gotten. There is a clear path to survival now. In fact, it is the most probable outcome.

Anyway, enough cancer talk. Time for another edition of scattered thoughts and bad gramar.
turn around.

Scans Looked Good

Title says it all. Next sceduled panic attack is August 29th. Hopefully I will get better at this. I need a f***ing drink.

Here I Go Again

Here I Go Again

Well, it is time once again to turn away from me blogging about news items I have no business talking about and time to move back to my health. It is time for my next set of Cat Scans. I go in tomorrow and will have the results on Tuesday the 18th. God, where did three months go?

As it gets closer I am getting nervous. It is kinda like a small slice of 2005 being ordered up. Is there any reason for me to be nervous? I don’t think so. The six month scans were good. My health has been fine. I am just having one of my weaker moments. Not very courageous of me. There are people who have been and are in much worse situations than me. But I am trying to keep everything honest and open in this blog. There is only one major subject in my life that I have not hit upon in this blog thing.

I need to Stay Positive! Remember XXXXX.

Will Daddy's Cancer Come Back?

Will Daddy’s Cancer Come Back?

While I was away on a trip for work this week, my daughter asked my wife if my cancer would come back. She must have heard my wife and I talking about my next set of scans. They are coming up on April 18th. I fully expect these scans to be clean. This date does not stand out in my mind like January 10th did. While I was waiting for that date, I could not see beyond it. I see April 14th as a routine check-up (if there is such a thing given what they are looking for).

Anyway, unlike Middle East politics and whatever else I may ramble about in this space, helping kids deal with their parent’s cancer is something I do know about. One thing I found early on was this great book written by Kathleen McCue, How to Help Children Through a Parent’s Serious Illness (click). The book deals with kids of all different ages and parents at different stages of disease. This book was a life savior during the worst of this crisis.

There are several points that came out from this book. The first is that you need to be honest. Do not try to hide what is going on. Your kids are part of your family and are part of what is going on. They are going to pick up that something big is happening. If you do not talk to them, they are going to assume that they are at fault. The second is to give them accurate information at a level they can understand. Do not tell them everything will be OK when you don’t know that it will. But also, don’t extrapolate the worst either. If things are unknown, tell them that you don’t know what will happen. Also, do not give them more information than they can handle. Let them know that you will answer any questions that they have. The final point is that they need to know that their needs are going to be met no matter what. They still need to play with their friends, go to soccer, etc. They need to know that their lives will continue no matter what happens. Both my kids handled the situation differently. But, for both of them, we made sure that they maintained a normal schedule.

My daughter is a lot like me. There is a line from Top Gun about Maverick that applies to her, ‘She is just like her father, only better. And worse.' She occasionally worries about the situation and always has a lot of questions. We do our best to answer her questions. The current answer is we think daddy will be OK, because that is indeed what we think. I am very happy that she when has concerns she feels comfortable enough to talk to us about them.

My son is different. He has not really asked about the situation. So, we don’t talk to him about it that much. His response when we told him about the surgery was to ask for more ice cream. I did not think he knew what was going on at all. Then, a couple of months ago, he and my daughter were playing house. My daughter said he should be the daddy. He told here there was no daddy. The daddy was dead. I then knew he was aware of a lot more than we thought. But, he has not said anything since.

I don’t know if this makes sense or not. But, God forbid, if anybody reading this ends up in a similar situation I have two recommendations First, get that book. Second, realize that your kids are stronger than you think. I have never been prouder of my two kids.

On similar note, here are some comments if you know someone who is dealing with a major health crisis. Do let them know that your are thinking about them. Ask them if there is anything you can do. Do not tell them what to do and not to do. And, my all time favorite, do not tell them that you could die tomorrow too because you might be hit by a truck. I heard that one a lot. I always thought the same thing. You can look before you cross the street, jackass. Sorry, but I did not want advice from healthy people. The only people I would take advice and criticism from were other people who had cancer. It was my issue and my fault. Everyone had my interests at heart. But my issues are my reality.

Information I Did Not Need to Know

This information came from the American Urological Association meeting in January:

* Histologic and pathologic features can be used to predict outcome and advise patients. Lesions less than 4 cm have a decreased rate of malignancy, and progression to metastasis is rare. Increasing preoperative tumor size is associated with increases in biological aggressiveness, as well as decreased survival rates.

* The presence of tumor necrosis is a strong and independent predictor of poor survival in patients with localized clear cell and chromophobe tumors.

The cancer they took out of me was made of two extremely large chromophobe tumors (24cm total as compared to the 4cm mentioned above) with large areas of necrosis. According to this, that means poor survival on two counts. I guess this helps explain why some of the doctors were so negative (the necrosis was evident on the first CT scan). Oh well, my last scans were six months out and looked good. Here’s to continuing to prove those doctors and these studies wrong.

I would definitely file this under information I did not need to know.

Die Another Day

Just got back from the oncologist. I won’t screw around. The news was great. The stuff they are seeing in my chest has not changed in size and is probably not tied to the cancer. There have been no new growths either.

This is not the end for me, I will need scans every three months for a while. But, it is the end of the beginning. Step one in this process was to get the tumor out (they were not even sure they were going to be able to do that). Step two was to get resolution on the stuff that was showing on my CT scans. That has now probably happened (nothing is ever for sure with this stuff). Some day I would like someone to explain the ill defined mass sitting between my aorta and esophagus that magically disappeared in September, but I am not complaining now. Friging radiologists. I’ll bet the first one just screwed up. Step three is to check for recurrence. That will still be nerve racking. My doctor says we need to be vigilant for another year and half. And, since there is no effective adjuvant therapy, all we can do is watch. But, this is a whole different risk profile than actual metastasis.

I have gone from take advantage of this time to get your affairs in order, to we can’t tell you what is going on, to there is no evidence of it in your body. I feel numb. What a ride.

Private Cheeseburger and the Doughnut of Doom

Just got out of the Cat Scan (machine looks like a doughnut). Test was simple. One time through. This time no contrast. My doctor agrees we should try to protect the remaining kidney. The results will be simple. If the things we are seeing in my chest are stable after six months it is a good sign. Then there may be a way out of this nightmare. If they have grown, or if there are any new growths, it would go into the very not good category. I will get the results when I see my onc on the 10th. I will post them out when I have them. (That was the purpose of this page.)

This time is probably a good time to look back on all those who have helped me. To my wife, I know this has not been easy on you either, but thanks for your unwavering support through this nightmare. To my brothers and sisters and their spouses, thanks for the emotional support. Picking up the cleaning bill was also a very nice show of support to my wife and was greatly appreciated. To my brothers and sisters in law and their spouses, thanks for the support and also for taking time to be with my kids. They need their aunts and uncles now more than ever. To my good friend “Jackpot”, thanks for your help putting the weekly college picks out to help keep my mind off of this stuff. To the doctors at University Hospitals, thank you for giving me hope while leveling with me about the gravity of my situation. Also, I know that the lead surgeon did not have the Friday after a two week vacation free. You guys obviously jumped through some major hoops to schedule me quickly. To my coworkers, thank you all for the support you provided both on and off the job. To my cousins, both in Cleveland and elsewhere, thank you for your prayers. To my old high school classmates, thank you for the kind words at the reunion. That may have been a trip down memory lane for you guys, but it was as meaningful a weekend as I have ever had with you all given the timing. This is especially true for two classmates. One who taught me the importance of staying positive in a very uncertain situation. Another who helped teach me the difference between being smart and being wise. Being smart is being able to answer the question. Being wise is knowing which questions to ask. And to all of you who have prayed for me that I may have missed in this list, thank you.

Remember, life is a mixed bag. There is good and bad for everyone in their daily lives. They key is to STAY POSITIVE and focus on the good. Also, life is about possibilities. Every new day is a gift that brings a fresh set of possibilities. If not to make your life better then maybe to help someone else out.

Stay tuned for Jackpot’s NFL Playoff Picks on Friday. Thank God there are less playoff games than bowl games. Jackpot's father-in-law is a former coach with the Broncos (two SuperBowl Rings). Hopefully that inside knowledge will result in better picks:) Page down for his Orange and Rose Bowl picks.

Faith and Fear

It's funny. One thing I find myself doing is e-mailing all sorts of different people. I probably bug the crap out of them. If you gave me your e-mail, you probably found out that I will use it:) But it is nice to see something in my inbox that does not have [KIDNEY-ONC] as a return address. I also am spending a lot of time building this blog. The one thing I cannot find the focus to do anymore is create thermodynamic computer simulations, the one thing I do as well as anyone, anywhere. Life was much easier when I thought I had all the answers. Hell, I was not even asking the right questions.

Faith

Another thing I have found myself guilty of is ignoring my faith. I treated it as a T-shirt. I took it out when it suited me; when it was time to get married, get the kids baptized, find a school for the kids, etc. I would go to church on Sunday and then put it out of my mind until next week. I know now that I need to work God's will into every aspect of my life. That is another lesson I learned. I need to treat everyone with respect, not just my circle of friends.

There was a full moon last night. It was beautiful. It is one thing that every human who has ever lived anywhere has been able to enjoy. It is a real work of art, not a destination.

Fear

My anxiety level is slowly creeping up. Maybe it is because I am getting close to the day that they originally wanted to do the next round of tests. I put them off until after the holidays. Was that a mistake? What are the masses that are showing up in my chest? They were stable between the last two scans. Was ten weeks enough time between the two scans to make sense of anything? They tell me that there is no effective adjunct treatment for kidney cancer, no chemo no radiation. So we watch and wait. In a weird way it was less stressful (but more depressing) when the prognosis was so poor. Nothing to do but meet the lawyer to get the will in order. Now my emotions are all over the map. Maybe this is what it is like to be female.

I can't give into the fear, I have to stay positive. What would xxxxx do?

Eye of the Storm

It is the funniest damn thing. Despite all the shit going on in my life right now, I have never felt this comfortable with myself. Don’t get me wrong. I am obviously scared to death with my health situation. And, I am mad as hell at work for what they are putting my family and me through after I have given them 15 good years. But, I also am feeling this strange inner calm that I never felt before.

All my life I was driven to excel. A lot of that drive was based on fear. If I did not excel, then something bad would happen. As long as I worked hard, I thought I could control the situation. If I stopped working hard, I would lose control and bad stuff would start because of me. Also, I always prided myself on being the answer man. If I could not make sense of some aspect of my life then I would either fake it or find a way to distance myself from it. But, I would never admit I was wrong, or out of control. That is why I became an engineer. There is false sense of control that comes from solving math problems. They are rigged so that you can always solve for X. There is only one right answer. And, if you work hard enough, you can find it. There is always a happy ending (in a weird way).

I guess all the stuff going on in my life is forcing me to deal with things in a whole different way. Things are completely out of control. There is nothing I can do to stop it. Will I lose my job? Will I die of this cancer? Only time will tell. There is no way to determine these things no matter how hard I try. I cannot turn these questions into neat math problems. I also can’t ignore them. No amount of surfing on the internet will determine the outcome of my kidney cancer. (That is another lesson that I learned from a classmate at my reunion.)

The result is that the prison I had built for myself is disappearing. The paranoia that drove me is gone. It is OK to be wrong. I have never felt so comfortable in my own skin. It is like I am in the eye of the storm. I just hope the cancer will let me live to enjoy my new outlook on life.

STAY POSITIVE

When I woke up the other morning, my wife was very upset. She had a bad dream about my future. She asked me what we should do. I told her what my classmate had told me (see 20 year bender below). We have to stay positive. With cancer, especially early on, there are so many unknowns. It is easy to get wrapped up in the negative possibilities. Some things just have to play themselves out of over time. I told her over and over like my classmate told me, we have to Stay Positive.

Stay Positive. Those two words were the best damn advice anyone ever gave me.

Sept 30th - Oct 2nd 20 Year Bender

Flew back to San Jose for the Willow Glen High School class of 1985 20 year reunion. I decided not to hide my condition. I did not want to make it a major theme. Most people are their to check in with other people besides me. But if people asked what was up, I would tell them.

The weekend started on Thursday. I went to pick my brother up at the airport (I had arrived in the morning). We were going to stop to see one of our old friends for "one" beer. This guys is a Navy Seal. I should have known this would not be one beer. The next morning I walked to my parent's house from his house. It was the first time I had ever walked all the way across Willow Glen. I needed the walk to stop things from spinning.

On Friday night there was a get together at a bar. Most of these people were I knew fairly well. When they asked, I told them about my cancer.

Saturday night was the reunion. I maintained a lower profile. I did not want to dump my shit all over the place. That is not what these people where here for. Again, if people asked I would tell them. There was one exception. One classmate had been through cancer 20 years ago and lost a leg. We were not the best of friends. But I knew I wanted to talk to him.

I met up with him later in the night. He said one simple thing over and over. Stay positive. You have to stay positive. Stay positive. He was right. Others had told me the same thing. But this guy had the street cred to back it up. He had been through this before. There are so many unknowns with cancer. This is especially true in my case, being it is so rare. I have the tendency to assume the worst. My prognosis is unknown. It is not good. But it is not terminal yet (it had initially seemed that way). He message was simple. He did not tell me not to worry. He did not tell me what not to do. Stay positive is all he said. He also informed me of another class member who had cancer when we were standing together. I pratically ambushed her later to get her story . I did not know her all that well. But she was a nice person and a former classmate. I also ran into another classmate who had also had cancer. This meeting was a little more forced and I could tell she was uncomfortable talking about it. One of my louder classmates was trying to help me out by introducing us. But she told that it would be OK and gave me a hug. All of the other cancer people I had met had been through different groups relating to cancer. Finding some classmates had to deal with this made me feel less isolated.

At an after hours party I told the person that had planned the party what was up. Hell, I was a little loaded at the point and probably a little too loud. She gave me hug and let me dump my shit on her. I did not know her all that well. But, she spent time listening to me. And, I could tell she cared what happened to me, and she let me know it. Other people also wished me well. Some of them were people I did not know that well. This did a lot for my spirits and I am taking this back to Cleveland with me.

The night ended with me, the planner and another classmate on sidewalk sitting and talking about life. This was another classmate I did not know all that well. And, he had taken a very different path. But, I was interested in hearing his take on things. God knows I am out of answers.

The weekend ended, as all weekends back home should, with a stop at Taco Bravo. I had the usual taco delite delight and bean burrito. God help the rest of the red eye passengers with that volatile mix in my system.

All in all, I was glad I went. Many of my old friends wished me well. In addition, some people that I did not know all that well also wished me well. Besides that, it was a good way to let off some steam. Though I probably should not have to many weekends like that on one kidney.

September 20th 2005 RIF

Well went through our Reduction in Force Training. My employer has not hired much since I was brought on board in 1990. In addtion, seperations are heavily weighted to seniority. As such, I am not in the best of stadings, despite my work record. This is an OUTSTANDING time to lose my health and life insurance. Oh well, they are targeting next summer. Hopefully things will change by then.

My life is rapidly becoming either a bad Lifetime movie or a good country song. All I need is for someone to steal my truck. Well I guess I would have to buy a truck first.

August 31st - Sept 13th 2005 - CTScan Again

Went for my next appointment with the spinning dragron (ct scan). I have been poked and pricked so many times that they had a lot of trouble getting the IV in. At least this experience had gotten me over my fear of needles. They did check my kidney function before hand and said that it looked OK.

They told me the results would be ready in a couple of days but I would have to get them from my oncologist when I saw him in two weeks. I could not wait. I called his office and asked for the report. I must have caught someone new in the office, because they were willing to send it out, no questions asked, to a fax number I gave them.

I was praying the report would show stable masses. It did not. The first page said that the mass in my lung and noticeable lymph nodes were stable. I turned the page to see what was going on with the large mass next to my esophagus and aorta. The report said that it could not be imaged this time. Could not be imaged? I was praying it would be stable. I didn't think gone would be an option.

I knew this changed everything. There were definitely things to worry about, the lymph nodes and spot in my lung. However, what I thought was the loaded gun aimed at my aorta could not be seen this time.

I ran home to tell my wife. She was upset. She didn't want me interpreted medical stuff on my own. I then said something I should have not, "I guess your upset that I am not going to die soon". And, I said it in front of the children. Of course she was not upset that I was not going to die soon. She was worried that when we did meet the doctor, he would pull the hope away from us.

All of all the stupid things I have done in our marriage, and there have been many, this was the dumbest. Cancer is extremely tough on caregivers. Everyone worries about the patient. People think about those providing care less often. There lives are turned upside down too. Everyone was looking out for me. Noone was looking out for my wife. Not even me. She has to deal with my sickness, my emotions, and the fear that she is going to be left alone to deal with everything if I do pass on. The resulting fight was big. But I had it coming.

We met with my onconologist on the 13th. He confirmed my interpretation. He said that large tumors metastasize more often than small ones. And, I had a LARGE tumor. But things looked OK now. He said I needed more scans in three months. I asked him if we could wait until after the holidays:) He understood and agreed. He did not give me a prognosis and I did not ask for one. After the initial you could be dead in two months, I could handle future unknown.

Hell I am even considering going to my 20 year high school reunion. This was out of the question when my prognosis was poor. However, with my prognosis unknown, it may be doable.

August 10th - Back at Work

I have been back to work for a while now. I am nowhere near as effective as I was before. I don't know if I ever will be. The old shit does not seem to matter as much.

We have my daughter meeting with an art therapist who specializes in dealing with children whose parents are facing major health issues. She has been wonderful. My daughter has always loved arts and craft. The therapist has her make artwork to represent her feelings and then she talks to her about them. This has been a godsend for my daughter. Of all the women in my life, she is handling this the best.

July 28th 2005 - Congragulations, Its Twins

Finally got the results of the biopsy. There was not one tumor but two. The first one was 13cm. The second was 11cm. That is 24cm of tumor. 9 inches. How the hell was that in my body without me noticing!?

Besides that, there was some suprising good news in the results. Despite the size, the tumor had not broken outside of the kidney. This means it was stage II, not stage IV as originally thought. Stage IV is almost always fatal. Additionally, the tumor turned out to be a chromophobe type tumor. From the little reading I had done on the internet I knew that this was the least aggressive form of kidney cancer. For the first time I feel that survival is a possibility. It will all depend on what is going on in my chest. The one disadvantage to the chromophobe sub-type was that it is so rare they have no idea how to treat it if it has spread.

My mood has improved a little.

July 15th Family and Friends

My kids are doing OK. My son is too young to understand. My daughter is nervous, but is doing better than all of us.

As far as my own personal mood. It sucks. Every day I cannot wait to get to bed so I can sleep again. During the night I get the sweats so bad that my clothes are soaked when I wake up. I feel everyone around me is critical of me. The comments always start the same way. I can't imagine what you are going through but... They are right, they cannot imagine what I am going through, so I wish they would keep their critical comments to themselves.

Also, it is taking forever to get the results of the stupid biopsy. They told me it would take a while due to the large size of the tumor.

One thing that did help is that my best friend's wife knew someone who had kidney cancer. I would listen to her because she did know what I was going through. She told me I had to fight. She gave me a great quote. Something like this, "Dying is easy. All you have to do is let go. It is living that is hard. You have to fight."

July 1st - July 8th Get it Out Already

Finally, the day has come to remove the tumor. Got to hospital and six in the morning on July 1st. The checked me and got me ready. After the put the IV in, they gave me something to make me relax. Whatever it was, it was good stuff. Much better than that stupid morphine I got later. That did not do a thing.

I woke up several hours later in my room. There were tubes sticking out of me from every direction. At University Hospitals you get your own room, which was nice. The surgery went much better than expected. My family was told it would take anywhere from two to seven hours. It took two.

I had finally gotten a break. There was some question whether the tumor would be removable and if it was what would have to come with it. The thing popped right out with the kidney. The pancreas was left alone. They were even able to leave the adrenal gland.

Everyone around me told me how happy I should be. Sorry, I did not agree with them. I just had my kidney taken out with a massive tumor attached to it. There were tubes sticking out of me from every direction. And, there are still unresolved issues in my chest. I was not happy. And, I did not appreciate people telling me how I should feel.

I was discharged on July 8th. I asked the doc about my long term prognosis. He said that it would really depend on what was going on inside my chest.

June 29th 2005 - Meet the Onc

Meet with my new oncologist. He told me that he did not know what was going on inside my chest. He set me up for more scans on August 31st. These would be compared to the scans from June 24th.

He told me that conventional chemo and radiation do not work for kidney cancer. There were some new drugs that becoming available. We would use those if there was trouble after the surgery.

He should me the MRI report. No more suprises, thank God. The only thing is that the tumor measures 18cm (as if it was not big enough at 15 cm).

June 28 2005 - MRI Take I

Had the MRI done of my abdomen. They used the dye again. At least I am getting over my fear of needles:) The test took forever. CAT scans are quick. One time through. This took almost 40 minutes.

June 27 2005 - Fix This

Called the insurance company. I had to explain to them that my Doctor was on their plan. After about five minutes, I was able to convince them. Why this was my job, I will never know. Aren't they the ones who are supposed to which doctors are on their plan?

June 24th 2005 - Are You Kidding Me?

Got a letter from my insurance saying they would not cover the procedure because the doctor was out of network. I looked in the book and he is definitely there. There is some weird problem here. God love the insurance company for sending this letter on Friday to completely screw up the weekend.

June 23th - What to Tell the Kids

One thing that is becoming a growing problem between me and wife is what to tell the kids and when. My kids are six and four. This is the hardest part of all this for me. I call deal with my own death. I cannot deal with the idea of leaving them fatherless at such a young age. Anyway, we found some books and talked to some people. The consesus we reached was to be honest with them. Kids are going to pick up that something major is going on. The books say if you do not tell them they will assume that they are at fault. We found a very good book from the Cleveland Clinic that deals with all aspects of cancer and families.

We decided to tell the kids after dinner. We sat them down. My daughter was worried about the upcoming sugery. My son wanted more ice cream. God Bless him. I was glad we told them.

The only problem was that my wife was not happy with my approach with my daughter. I have a great wife and a good marriage. But this health crisis is tearing at my marriage as much as it is everything else in my life

June 22 2005 - Oh S**t

Got my hands on the CAT scan report. The reports says there is an ill-defined tubular mass behind my esophagus that runs from my aortic arch down to my esophageal hiatus. The maximum dimensions are 24mmx18mm. There are also several lymph nodes that are noticeable. And, there is a small spot on my lung.

From looking at some anatomy pictures on the internet, the length from arotic arch to the esophageal hiatus is about six inches. This is not good. I have a large tumor on my kidney and several unexplained masses in my chest. Dr. xxxx wants me to see the onc before the surgery.

June 20th 2005 Cat Scan Take II

Went for the CAT scan of my chest. From reading on the internet, I could tell that if they found disease in my chest I would be considered stage IV, terminal. These results would be critical.

The scan itself was uneventful. This time they used IV dye. God, I hate needles. This time the techs did not give any indications, not that I was looking.

June 15th 2005 - Maybe as Soon as Two Months

Got up and went to the Cleveland Clinic. It seemed like we were waiting forever in the examination room for the doctor to come in. He confirmed our worst fears. Sandy asked him if it could be benign. He said that was highly unlikely. He looked her in the eye and told here "don't think this is not cancer". He would not look me in the eye during the entire consult.

He told me that the only way to treat Kidney Cancer is to get it out before it spreads. He said that I needed surgery and they could get me in about two weeks, after some tests. He said that from the CAT scan it looked like the spleen was involved and would have to come out. In addition, the pancreas would have to be shaved. There was also a chance of bowel involvement. He also told me that there a good chance my tumor would not be removable and they would have to simply close me up.

One thing the working in the work bureaucracy for 15 years taught me was how to read people's body language. I could tell that this guy would treat me and do so to the best of his ability. But, in his mind I was already dead. It was just a matter of time. I asked him about time frame for planning purposes. He said maybe as soon as two months.

We thanked him and immediately called University Hospitals. They said they could see me if I could come over right away. Obviously we did. My wife and I were crying on the way over. All I could think of was my kids. I could handle the issue of my own mortality. However, I could not deal with the idea of leaving them fatherless.

Met with Dr. xxxx from University Hospitals. He agreed that it was cancer. He scheduled an MRI and a CAT scan for me. The MRI was to examining the local area of the kidney. The CAT scan was to look for spread into the rest of my body. He told me that the primary surgeon who did these things, Dr. xxxxx,was on vacation. But, given my condition, they would fit me in as soon as they could.

I asked him for a prognosis. He refused to give one. He said he was not willing too until they got the tumor out and staged and graded it. He simply said I don't know. I would learn that those three words "I don't know" would be smartest thing a doctor could say.

I went on the internet at night to get educated. I learned that if the cancer had spread to organs such as my spleen it would be considered Stage IV, terminal.

June 14 2005 Your Test Results are Very Abnormal

I was working on some Nuclear Power System balance models when my cell phone rang. It was my doctor. He said my results were very abnormal and he needed to see me right away. I was not surprised.

I called Sandy and told here what was going on. She met me at home and we went to the office. When we got there he showed me the results. I looked at the conclusions. Massive Renal Cell Carcinoma until proven otherwise. The thing measured 15 cm. Kidney Cancer, and a big one at that.

The doctor told me that he made an appointment for me first thing tomorrow morning at the Cleveland Clinic. He thought the Clinic was on my insurance. It was not. But I knew the gravity of the situation. I would pay for the appointment out of pocket and use it as a consult. The doctor said that this was the source of the bleeding and we did not have to look any further. Great, as if what you found was not bad enough. I asked him about my prognosis. He said you need to catch Kidney Cancer early. The prognosis for a tumor of my size was poor. He also said not to confuse a prognosis with an outcome.

I went home and went online. Sandy said that her former boyfriend's mother had a large tumor that turned out to be benign. Maybe this will be too.

June 13th - Nothing to Worry About

Went for the ultrasound. I am know getting very worried. They did my right kidney and everything looked fine. However, when they went to do my left they were having trouble imaging it. The tech left the room to talk to my doctor. When she came back she told me it would be a good idea to do a CAT scan right now. I asked her if I should be concerned. She said "nothing to worry about, this sometimes happens". During the CAT scan the tech felt compelled to tell me that the results should be ready tomorrow and I should phone in if I don't hear anything. This is not good. Those guys are seeing SOMETHING. I know the techs are not supposed to say anything until the doctors see the reports. But obviously something is up.

June 8th 2005 - Worrisome

Attended my daughter's kindergarten graduation. Ceremony was very nice. However, my urine is still dark red. It has been that way for several days. It is pretty obvious that is blood and it is not stopping. Been on the internet. There are a lot of things this could be. Most are benign, such as a urinary tract infection or a kidney stone. However their is usually pain with these. My combination of blood and no pain is "worrisome" according to what I am reading. Sandy told me to remember that I have a habit of blowing things out of proportion. She is right.

Glitter are Back

Well, my daughter's soccer team is back in action after the winter break. Coaching those six year olds is the greatest thing in the world. They are so happy and easy going. It does not take much in terms of material things to make them happy. Just some of our attention and caring. Why can't we keep that innocence as we grow up? By the way, the won 7-0, so they are back to their old form. Even though as coach, I do not keep score:).