03-20-2011

03-20-2011

I have been avoiding writing my 'blog. I've done a cursory update on my pet scan results and also I posted a 25th wedding anniversary spot. But I have purposely avoided writing what's been going on in my (and my family's) world.

I've been avoiding it because it's just too ---damned painful. But I feel like I should document what's going on in my world, because it gets right to the core of me.

My daughter Tessa is 19 and autistic. We have decided to place her in the care of an agency. She will not live with us any more starting tomorrow. It's gotten to the point where we are really not able to do any more to help her in our home setting. We're not able to provide the structure and regimentation that she needs. This decision was, as you might imagine, one of the most difficult decisions in my and Julie's life. She will always be our sweet little "baby girl" and we love her dearly.

And, speaking for myself here, I can't help but feel guilt and failure. I can reason through the whole issue and logically come to the conclusion that there really wasn't any more I could do. But my instincts as a parent suggest otherwise.

Tessa is a sweet, lovable little girl who will remain forever young. She needs more than we are able to provide for her at this point. Our hope is that Tessa grows as a person and is able to do more things for herself and interact better with others. We have visited the house she's moving to and feel very good about the staff and the setting. The staff has told us that the other girls that Tessa will live with came to them with a lot of the same issues that Tessa has. They are confident that Tessa will find her niche and be a happy and fulfilled young lady.

Parents want their kids to be comfortable, safe and happy. They also want them live up to the best of their capabilities, whether their child is supremely gifted or profoundly challenged. I would give my own life, in an instant, for Tessa to be able to be like most other 19 year old girls. But it's just not in the cards. So the next best thing I can do is to help her live her life to the fullest. And I do want her to have her own life even though it's killing me (and us) to let her go.

Everyone that we've told has been very supportive, and we are very grateful. THANK YOU! We have had terrific support from family and friends.

It's been a gut churning experience, but we've gotten to the point where we've acknowledged the inevitable: we just need to get her moved in so we and she can move on to the next stage.

We are very lucky that her new house is just 2 miles from ours. After she gets settled in, we can visit any time.

It will be very easy to have her home for weekends and holidays. Those are all things we're looking forward to.

But the big ugly part of moving her out of this house and into her new house looms over us. Tomorrow when she returns from school we will take her there to start her new life. We are all dreading it.

Kids grow up and move away to college, or move out after finding a job or after getting married. In some ways this is similar. But in other ways it's different. Tessa can't tell us if something's wrong. We can't call and talk to her on the phone.

I was just thinking how the four of us have been a team for 19 years, since Tessa was born, and now the team is breaking up. It just feels wrong and I can't help but feel sad about it.

Hopefully in a few months we'll feel better about this.

But right now it just hurts like hell.

The Ides of March, 1986, 2011

The Ides of March, 1986, 2011

25 years ago today a crime was committed in Somonauk, Illinois.

The crime was first degree marriage. Here's a picture of the crime scene:

(You should be able to click on any picture to zoom, makes it easier to make fun of the hairdos)



For richer or poorer (she got the poorer)

In sickness and in health (she had to deal with my sickness)

Til death do us part (I've done 25 years. I could have murdered someone and probably would have been paroled 5 years ago! Does that seem fair?)

Mugshot of the Happy Lovin' Couple, 3/15/1986:


We haven't changed a bit and I can prove it. Here we are today, 3/15/2011:


We look exactly the same, huh?

So to celebrate, we re-assembled the wedding party. Well, we KIND OF re-assembled the wedding party. The only one who would be associated with us was the Junior Bridesmaid, our beloved Jori - extreme left in the group picture above.

(And for being such a good Junior Bridesmaid, we hereby promote Jori to Full Senior Bridesmaid, along with all the honors and swag associated with the title. Hear, hear! Long overdue.)

We had an anniversary breakfast (wow!) at a local greasy spoon.

And then I went to work.

Julie went shopping.

Some things never change.

Since that fateful day, we've had 2 apartments and 2 houses. Untold numbers of Fords, Chevys, Mazdas, Mitsubishis, Isuzus, Jeeps... 2 wonderful kids. 5 presidents, 8 employers. Unemployment. Cancer. Good times. Dark times. Family members have passed on. Friends have come and gone, some have come back again.

300 months of life have rained down upon us.

We're still together.

For me, it's been a great ride, with the best wife and best mother for my kids I could have asked for.

If I were doing it all over again, I would. Do it. All over. Again.

I hope she would too.

Lovya, Julie!

Petscan results; all good!;

02-24-2011 PETSCAN today

02-24-2011 PETSCAN today

Hello, friends!

I'm getting my pet scan today, so this is my last food for 7 hours or so.

Slim Jims and string cheese. With Merkts Port Wine Cheese Spread slathered on all of it, ALL OF IT, BABY! And washing it all down with cool, clear water.

Livin large, indeed.

February 19, 2011

February 19, 2011

Looks like spring might be just around the corner. It certainly has been a long, cold, snowy winter. The older I get the more I dislike winters in northern Illinois.

The view from here

I've managed to do pretty much nothing all winter. I had plans to stay in shape by stationary biking but I didn't keep up with it. Pretty disgusted with myself. Once I got done with chemo in November, I just relaxed and enjoyed life. For 3 months. No excuse.

***

Next week I'll get a blood draw Tuesday, then a PET scan on Thursday. I'll get the results the following week.

****

I called the cancer care center to schedule my draw and the nurse said they enjoyed reading my 'blog! Go figure. Anyway, I'm glad I printed it out and gave them a copy. Hopefully when I go in there I don't get taken to task for anything I put in there! :)

****

What's happened over the winter? My mom really struggled with her COPD. My sister Mary had come home from Carolina to stay with her. Mary did yeoman's duty, for sure (more about that shortly). Finally my sister Marta, who's a nurse, suggested a specialist. Pulmonologist, I think. This guy really got her straightened out. Previously she couldn't go from the house to the car without huffing and puffing and she was on oxygen pretty much 24x7. Now she can get out and to the store, walk around, the whole bit. Night and day difference, for sure. So everyone's feeling good about that. 86 and making yet ANOTHER comeback.

****

My sister Mary temporarily relocated, away from her husband and 2 beloved dogs in S-Carolina to be a caregiver for my mom. Her boss agreed to let her work from home, or at least, from her Illinois home. She was here for about 3 months, I guess. She was terrific with my mom.

How to put this delicately...there was some family friction with regards to how to proceed with my mom and Mary navigated the whole affair, pretty much by herself. It wasn't always easy, and I know it was a thankless job. My mom at 86 can be a handful. Mary was terrific. She's 3 years older than me and we hadn't spent more than a few days together since... oh, maybe 1973 or so. Yikes!

Mary and Austin

At the beginning of January my mom's primary care suggested she get out of her house for a while to see if any of here COPD problems were environment related. So, Mary got all mom's (and her own) stuff gathered up and made the 30 mile trek (in a snow storm) to our place.

They stayed about 2 weeks and we truly enjoyed having them here. I hope the feeling was mutual. The whole experience with Mary for me was like re-discovering a dear old friend.

We grew up together and then moved out and had our own families. We grew old apart. Nice to know that when circumstances dictated that we spend some time together, we found out that who we were then is who we still are now.

I love you Mary!

***

My buddy J., our IT consultant at work, had a problem with a tooth. He didn't get it taken care of right away. When they had a look, they told him the infection had spread to his sinus cavity. Then it spread to his brain, he was told. He had some problems with his vision, and I believe he had a seizure.

The neurologist told him it was a benign mass after reading the scan. Not a huge deal and not an emergency, but it would require surgery, at a cost of about 100Large. Then he found out his insurance wouldn't cover it. He was able to change his insurance (premium went through the roof based on his pre-existing condition) but had to wait a while to have it covered. He finally went in for the surgery. When the neurologist looked at the new scan, done just before the operation, he found to his shock and horror that the tumor had doubled in size. You guessed it. Malignant.

They did the surgery, and were confident that they'd gotten most all of the tumor. He then had radiation and chemotherapy. Blood clots in his legs followed. And at some point in there, for good measure, his wife served him with divorce papers and he had to move out of his house.

I know J. only casually through work so I won't pretend to know all of what's going on there, but come on, divorce papers at that stage?... I won't print what I'm thinking about the spouse.

I talked to him a couple of weeks ago and he seemed to be doing well, all things considered. Can't drive yet, so he has people driving him to his doctors appointments and to all his client's locations so he can do his job. He said the doctor said he was within a week of having his surgery too late. He feels fortunate.

I made absolutely none of that up.

I'm wearin' the yellow bracelet for J. now also.

****

Speaking of the yellow bracelet, it's not looking good for Lance. Seems like someone has a vendetta against him and will stop at nothing to prove allegations from... how many years ago?

I'm not trying to defend him. I didn't get "into" biking until after Lance was done winning his Tours de France. I certainly admired his accomplishments and even had a livestrong bracelet BEFORE I ever knew I had cancer. As I think I 'blogged previously, I had bought his book and started reading it but then put it down. After I was diagnosed with NHL, I picked it up and read it cover to cover. I found that he had a lot of the same thoughts that I had and I thought it was a good read. I intended to do a 'blog chapter on the book but haven't got around to it.

I also know from things I've heard and read that he is a very polarizing individual. People seem to love him or hate him, not much middle ground.

Do I think he took performance enhancing drugs? Speaking generically and not specifically about him, I believe "they" are all dirty. I think there's too much to be gained and too much to lose to NOT take them. If you think about the TDF, it's considered to be the most difficult accomplishment in all of sports. It's a grueling, sadistic, endurance contest. Anyone who sets out to win on their own will fail. You must make deals, forge alliances, have "domestiques" who do the dirty work for you, pulling you along in their slipstream to conserve your energy for the finish, helping you rejoin the pack when you crash, and on and on. And then you climb the Alps and the Pyrenees (!) in the blazing hot sun all the while your oxygen levels plunge in the thin mountain air. Contestants have died.

So what I guess I'm trying to say is that I would be surprised if he DIDN'T take PEDs. The guy that won the last 2 TDFs just tested positive recently. Like I stated, I think they're all dirty.

Do you remember Kenneth Starr? The Independent Counsel who tried and tried and tried to pin something, anything on Bill Clinton when he was president? Yeah, that guy. As I recall his initial thrust was investigating Whitewater, some real estate deal from Arkansas that someone was convinced would bring down Slick Willie because of some law he might have broken. Only, he never proved anything that led to any charges against Clinton with regards to Whitewater. And he spent $40M!

What finally fell in Kenneth Starr's lap was all the Monica Lewinsky stuff. How sordid, how unfortunate, how scandalous. But at the same time, it had nothing to do with the $40M or any of Starr's efforts. It all came about because Miss L. blabbed to a friend who blabbed to Kenneth Starr.

So a guy like Starr spends $40M of our money on a witch hunt and finds nothing. But he acts like a hero when something that in the greater scheme of things would have been totally inconsequential by chance falls in his lap.

Do I think Willie was a scumbag? Yes. Do I think what he did with Miss L. made him unfit to be president? No. Do I think the real crime was when he lied about it when asked? Yes.

But above all, do I think it was worth $40M to find out he couldn't keep his equipment in his pants? Absolutely friggin' not!

My point being this: At some point, don't you question the motivation of the accuser? Why would someone spend so much time and so much money on something that at this point is so far in the past AND really, so insignificant? Maybe just because they want to make a name for themselves? Or maybe they have an intense personal dislike for the target?

Maybe the whole investigation says a lot more about the accuser than it does the accused. What do you think?

I don't wear the livestrong gear because I'm a big Lance fan. I wear it because it reminds me of the fight against cancer. And if Lance's convicted, I'll still wear it. Maybe then they'll investigate me.

I've never met Monica, I swear:).

***

After I was diagnosed, Julie and I started wearing the livestrong bling. Some of our friends started wearing it too. And they all said "we're going to wear the bracelets until you're cured". How sweet of all of them.

The other day I noticed a yellow bracelet in our bathroom. I said "Julie, whose livestrong is that?" She says, "oh, it's mine. It makes my wrist sweat"....

Wife's actual livestrong bracelet, lying
in actual wooden box on our
bathroom vanity, actually.

Not actual size.

Oh, it makes your wrist sweat, does it? It makes your wrist sweat? Well I just noticed... MY TUMOR'S BACK AND IT'S YOUR FAULT! Oh, I could have been cured of cancer if only the bracelet didn't MAKE MY WIFE'S WRIST SWEAT!

Jesus Palomino, so much for commitment. So much for wearing a lucky charm, a talisman, a mojo inducer. It's all about her spouse's health, UNLESS IT MAKES HER WRIST SWEAT!

Thanks honey. I love you, too.

Thanks for listenin', friends, I feel better now.

***

Blizzard 2011

BLLLLLIIIIIZZZZZAAAAAARRRRRRDDDDDDD!



Driving home 2/1/2011, about 3:30 PM







Our kitchen window about 8:00 PM:





Front Porch Drift, 2/2 AM:





Pool Drift:




Me and my bud Eric went joy riding, proof I'll never grow up. On 6th St. we rolled up on a lady whose car was buried bigger than you know what. She rolled down her window and said "I am not a douc--. I was going to the veterinary clinic to tend to some doggies that had surgery yesterday".

I assured her that since she was on a mission of mercy, she was NOT a douc-- but rather a HERO. That made her feel better. Glad to be of service.

We helped push her out. And then I got us stuck in the same spot on our way home. Since we were not saving puppies but rather joy riding, I guess we ARE a douc--,huh?


Rogers Road south of Sandwich




Sandy Bluff Road south of the gas plant. It looked a little dicey, but with a running start, there was no stopping m'Jeep:




Looking back at the road just traveled:




We got stuck on an un-plowed Finnie Road, but I hadn't realized I was in 2WD. I got in 4WD and Eric gave a push and I backed out no problem. Probably a good thing, because had I not gotten stuck, seeing the bottom of the hill that I almost got to, it would have taken a helicopter to rescue us.

Me and my excellent wingman, Eric (squinting due to snow-blindness):





This poor guy drove off the road the night before and was further buried by the snow plow. We tried to help but couldn't get him out.

He's gonna need a bigger tow truck:




Chicago's 3rd worst snow storm all time. We had a blast. Work tomorrow.

And how was your day?

01-03-2011

01-03-2011

Tomorrow morning I'm planning on stopping at the Cancer Care facility and dropping off some bagels or donuts for the staff and a small gift for my doctor.

I printed my 'blog for Dr. R. and put it in a binder. I will include this note:

***

What we do for ourselves dies with us. What we do for others and the world remains and is immortal. - Albert Pine

December 2010

Dr. R.,

Thanks very much for all your help over the past 6 months. You've helped me and my family to cope with a very difficult situation. You certainly have a gift for helping people and it has been my good fortune to have you for my doctor.

I have been working on a weblog, or 'blog relating to my experience with cancer. It has been very therapeutic for me to keep a journal of my experiences. I thought you might like a hard copy of it so you might get a view of cancer care from a patient's perspective. Also, if any one in your office or any patient might like to read it, please feel free to pass it on.

I continue working on the 'blog, although now that I've completed my initial treatment the updates are less frequent. I'm sure updates will increase once I begin my maintenance in May.

The web address is

www.independence-day-2012.blogspot.com

(be sure to include the dashes if you look it up online)

Some of what is in the 'blog is directly related to my treatment, some related to interaction with my family, some reflects my personal life. I'm sure some of it is quite boring, unfortunately (one thing for certain I can tell you is that my creativity and output increased when I was taking Prednisone). Having said all that, hopefully there are some entries that you would find helpful. And please forgive me for logging the results of my bloodwork! I just love a chart, I guess.

I must say that everyone I have encountered at the Cancer Care facility has been terrific, including the receptionist, the nurses, the scheduler and everyone in between. You have a great staff there and I hope they are aware of the positive difference they make in peoples' lives.

All my best to you and your family. Here's looking forward to a great 2011.

Steve

12-23-2010

12/23/2010

Sorry I haven't updated my 'blog lately.

Went to the Dr. earlier this month, everything is going fine. My levels are all good. I promise not to post my charts any more. ;)

I'll get a PET scan in a couple months and then my maintenance treatments will start in May.

Our oldest turned 24 yesterday! Our youngest will be 19 next month! Although I'm getting old, life is good.

Thanks for supporting me in 2010, let's all have a great 2011.

Hope you all have a safe and happy holiday with your friends and family.

Steve

12-08-2010

12-08-2010

Thoughts on a winter morning

Shout out to my brother in law Bill, who's having open heart surgery tomorrow.

Shout out to my buddy, our IT guy, Joe, who had surgery yesterday.

Shout out to my mom, who's dealing with COPD issues, etc.

I was thinking about those things when I woke up this morning, and the 9 degree temperature outside. Made it kind of hard to get out of bed.

Onward and upward, and where's my coffee?

12-05-2010

12-05-2010

We got our first snow of the season beginning Friday night and ending Saturday afternoon. Like Julie said, the first snow is kind of exciting, then after that it just sucks.

Back yard shot:



Tessa and I jumped in the Cherokee and went four wheelin' yesterday. But we got out too late; most of the roads were already plowed. We still managed to enjoy ourselves.

So, we got that goin' for us.

**

Not much going on with me. I have a doctor's appt Thursday so we'll see what will happen between now and May when I start my maintenance.

**

My last posting I didn't really discuss my thoughts on Thanksgiving. That was an oversight on my part. I really DID reflect on my good fortune and thankfulness.

My buddy Chuck called me the day before and we had a nice long talk about exactly that. Chuck is coming up on 2 years as a successful organ transplant patient and so I guess we both feel like we're in the death cheater's club. It was a good feeling to share another Thanksgiving with family and friends, no doubt.

**

Lee Harvey, you are a madman. ... I want to party with you, cowboy.

Are you old enough to remember the Kennedy Assassination? I am just barely old enough myself. One of the coolest museum visits I remember was in 1999 when I visited my brothers in Dallas: The Sixth Floor Museum was absolutely fascinating to me. Link here:

http://www.jfk.org/

They practically had to drag me out of there. And then when the actual death limo drove by on the street out front... well, it was almost too much for a "Kennedy Assassination Slut" like myself to bear. My one regret is that I didn't take the death limo tour.

That's morbid, isn't it?

If you are interested in the subject, here's a DON'T MISS: The Discovery Channel's The Kennedy Detail. It's a two hour special based on the book of the same name.

This was the best documentary on the subject that I've seen. The setup is like this: A group of men is given an impossible task. After they (predictably) fail, they spend the rest of their lives (47 years and counting) agonizing over their failure.

I've watched a lot of documentaries on the subject. What sets this apart is that the actual Secret Service men on duty that day are featured. I've never seen them interviewed previously. One of them, Gerald Blaine, wrote the book this is based on and it obviously got the unofficial blessing of all the guys wearing dark glasses on that cold November day so long ago.

To watch these old, old men go back in time 47 years and retell the story of their obvious adoration of Jack, Jackie, their son and daughter and the anguish over the assassination is absolutely riveting. Not to be missed.

And wow, what a different time it was, 1963. To the casual observer, JFK was a beloved president, but scratch the surface and you'll find that there were a lot of people who did NOT love him. And probably many who wanted him dead. In that respect, he was no different than any other president, past, present, or future.

But in the end, a lone, nutball gunman, a total misfit, changed the course of history. As one of the secret service men put it, paraphrasing here: 'He (Oswald) was a loser. No one could stand him for more than 5 minutes. He was such a loser that after he successfully executed his plan, he got himself shot and killed before he could bask in (his twisted perception of) the glory'.

I think that's what chaps the Secret Service's proverbial ass. Had the Russians pulled it off, or the Cubans, or the Teamsters, at least there would have been some credible (yet diabolical) organization behind it. But for this dirtball scumbag loser to have pulled it off is just more than they can stomach. And that's probably why, for the better part of the last 47 years, tons of people have tried to find a tie between Oswald and someone, just so they could feel like there was some great conspiracy behind the whole thing, and thus, give Lee Harvey some significance, some weight. But at this point, I think most people have given up and the lone gunman theory has become the lone gunman FACT.

And when I looked out the window of the 6th floor, I was convinced that with a little training, I could have pulled it off. No kidding. But Kennedy's Secret Service detail in Dallas I believe consisted of 5 guys. Today it would probably be 100. And no open top cars.

Where in the hell was the damn Popemobile when we needed it?


Over the years, there have been 4 sitting presidents assassinated and numerous other thwarted attempts. They almost killed Reagan, did succeed in wounding him. FDR was nearly killed, a Chicago mayor with him took the fatal bullet instead (insert Chicago joke HERE). Experts believe that one of the 9/11 hijackers was stalking "W" days before 9/11. There were a couple of attempts on Ford (and a couple by Ford himself, although inadvertent:)). And on and on.

Clinton... well the only gun that got Slick Willie in trouble was the one he couldn't keep in his pants (Wee Willie?), but that's a different story.

I'll be here all week, try the veal.

Point being that it is impossible to protect an individual. Best you can do is the best you can do. And it just might not be enough, as was the case in 1963.

Anyway, if you are so inclined, give this a viewing.

**

Speaking of what could have been makes me think of my beloved but broken MagicWheel. And this morning on craigslist, I stumbled across this, under heading "Unique type of bike":


I'm not bitin', just so you know. He's asking $250.... but if he gets down under two bills... nah, just kidding.

This looks like it would ride like a dream, unlike the MagicWheel, but unfortunately, would do so with none of the "Kool". Most unfortunate.

**

Gender Re-Assignment, nearly (mine)

The JFK stuff reminded me, speaking of projectiles:

My mom had to get a personal home monitoring system. It's a bracelet or a pendant with a button on it which you push if you are alone at home and in distress. At that point the people at the monitoring center can talk to you and assess your condition, sending help if need be.

Yes, it's like the "I've fallen and can't get up" thing.

One requirement was that she hide a key somewhere so that if they dispatched police or ambulance personnel they could gain access. My mom wasn't too keen on that idea, so instead she bought a keyless entry. That way she can give the code to the service up front and not have to hide a key.

I installed the keyless entry and had a little difficulty removing the old lock cylinder from the door. There was an email exchange between some of the members of my family. When I realized I hadn't 'blogged this, I felt guilty (again, what is WRONG with me?), so here it is. I did the drawing in Excel, FYI:

yeah, so what happened was that I was taking the lock cylinder out of the deadbolt. it required quite a bit of force and when it finally let go, it shot out and zipped right under my... well, my... my most private of privates. it passed so close and at such a high rate of speed that you could hear the nylon of my sweat pants whistling. it was one of those maxwell smart "missed me by that much" kind of things. luckily, all it took away was my breath. See illustration.
**

And, in conclusion...

All my best to you and yours. I hope you're enjoying the holiday season.

I know I'm not;)

11-28-2010 - the last 10 days

11-28-2010 - the last 10 days

WARNING!!! XTREMELY BORING!!!!

Thursday the 18th I went to the dermatologist. I knew he had gone on a vacation, so I asked him how it went. He said it was great, he went to Arizona and hiked. He'd meant to bike but he had so much fun hiking he didn't get around to biking. He asked if I had been to Arizona. No, I said. Well, he told me, definitely put it on your list. Then I could see him thinking... we'd discussed my cancer previously...a guy with cancer probably DOES have a list.... OOPS!

Yes, I'll put it on my list, I told him. He smiled nervously. I'll put it on my bucket list, I said, more forcefully, and with a smile. The doctor, nurse, and I had a good laugh.

That reminded me of a conversation I had with someone shortly after I got my (good) results back from my PET scan. It was a friendly disagreement as I recall and after I made my point the person said to me "I liked you better when you were...." (voice trailed off and the sentence wasn't finished). "TERMINAL!" I finished it for them. I never was diagnosed as terminal but it made the conversation more interesting. We got a good chuckle out of that one, too.

Friday the 19th Austin and I went to my mom's. My mom's still not staying alone at night. So Austin and I spent the night with her on Friday. After they had both gone to bed, I stayed up and channel surfed. Guess what was on? The Bucket List. I hadn't seen it so I gave it a viewing. Good movie. Favorite dialog was when Nicholson (playing Edward Cole, my dad's name) gives his younger assistant advice for when he's an old man (I'm paraphrasing here): 'never pass a bathroom, never waste a hard --, and never trust a fart'.

Good words for old men to live by, I guess. I'll let you know for sure when I'm an old man myself. Gettin' pretty close.

Saturday morning we headed out for the semifinal HS football game in Rock Island. Unfortunately, Sandwich lost 19-0. But they had a great year and Austin and I had a good father-son bonding / road trip / thing.



Then we went back to Mendota to my mom's and Julie picked Austin up and took him home. I spent Saturday night with my mom. It was nice to spend some time with her. I really appreciated the 6 AM koffee klatches. Not many chances for those recently.

Monday the 22nd it was back to work and after work, my blood counts. My wbcs were like 19.1, totally off the charts due to the neulasta. The nurse said it was OK that they were that high. I told her I was going out to shake sick people's hands because I was invincible! Charts soon.

Then the short work week. Thanksgiving we had Julie's family over and had a really good time. Sis-in-law Sherri cooked the bird and I was giving her grief all week about not drying it out. Let me tell you, she DID NOT dry it out. It was one of the juiciest turkeys I remember. She batted that bird right outta the park. We had a lot of great food.

As usual, we set up tables and chairs in our garage and had two TVs going with their volumes muted and the stereo on. That's my usual M.O., I like to make it feel like a party, or like you're having a few drinks with your pals at a bar. What's wrong with me, exactly?

A few of us tried the MagicWheel. My nephew Mack had a crack at it, he probably could do it given more time. I demonstrated my (total lack of) prowess. Bro-in-law Larry opined that I was on the right path, all it would take was practice... more on that later. Nephew Tyler tried it, as did his girlfriend Steph.

Julie's mom Jean always likes to play cards (In Between) for quarters. They got started on that but daughter Tessa wanted their cards so she could play with them. She already had a deck, but her autism told her she had to have both decks, and she kept coming back and making it VERY CLEAR that she needed them. She stalked and stalked them and finally got her way but not before a lot of quarters changed hands and they were ready to quit.


Then Austin made everyone go in the basement so he could give a little concert. With a CD blaring, he sang along, cowboy hat and all. No one in attendance will soon forget. He loves to feel like a superstar and god bless all in attendance for indulging him. Even though bleeding from their ears was no doubt very painful.

After Austin and Tessa put on their little shows, no one asked us to host XMAS. Should I have been surprised?

Friday and Saturday Julie did a little XMAS shopping (I'd rather be beaten to death with a hockey stick than face those crowds). I surfed the internet, watched TV, and pursued various other worthwhile endeavors.

And then a book arrived: Brother Dave sent me a terrific book on the Tour De France (thanks, 'bro!). A lot of vintage pictures and great stories. Definitely a good read.

Today, Sunday the 28th Julie talked me into putting XMAS lites on the house. We had a nice day in the 40s so it was a now or never deal.



Julie mentioned to me what a rag I am about XMAS (true). I do truly hate XMAS. It's not the idea of the holiday, or the actual day itself, what I hate about it is that it starts right about Halloween. And there's just no escape. The vendors just beat you and beat you and beat you with it.

The other day when I was going into the clinic, I overheard two ladies talking : '93.9 has all Christmas music on now... ALL THE TIME!' They both squealed with delight. Just thinking about it, I threw up in my mouth a little bit.

I would like for XMAS to start December 1st, be reasonable in scope, and be more about spending time with your family than about breaking the bank buying gifts.

I'm an old curmudgeon, a scrooge, or whatever. I want XMAS on my terms. And I refuse to give in. Because I'm right.

And that's all that I have to say about that.

Julie does a very nice job decorating our house. She could probably use a few more XMAS trees as she only puts up the 5. But God bless her, she has the enthusiasm plus the energy and the stamina to do all the XMAS-y things around the house. Because I sure the eff don't.

While I was outside today I decided to take a few flights on the MagicWheel. I took a couple nice runs (maybe Larry was right, all I need is to practice). Then I took a VERY nice run, all the way down the driveway, soft bounce off the curb, and then... I guess the cumulative effect of all the spills caught up with the rear wheel, 'cuz the emm effer broke!



Yeah, and just when I was mastering it, too.

After the lights, I watched the Bears and decided I should 'blog, so here I am.

Have you noticed what's missing? Yeah, no biking. Too dark after work and so that leads to me abandoning it altogether, unfortunately.

I've been feeling OK, but for sure I've been eating too much and sitting around.

I know I've been gaining weight and am not happy about that. So I have to get back in the saddle again, exercise wise, no matter what saddle it turns out to be.

People have told me my face looks better (less drawn, I guess) now that I'm carrying more weight. What to do? I feel better at 190 but evidently I look better at 200/205/210.

Ain't life a kick in the head?

Well, at least I got my lights up.



Have a great week!

11-18-2010 Cankle Cam

11-18-2010 Cankle Cam

I took this pic w/my cell phone at work this afternoon.

Prednisone at work.

How disgusting is that?

11-18-2010 update, 3rd day after 6th chemo

11-18-2010 update, 3rd day after 6th chemo

WARNING: this is a boring post!

Monday I got a neulasta shot. Nurse said it's the same meds as the neupogen except... somehow it's a controlled release, so if your wbcs are ok, nothing happens. But if your wbcs drop, the neulasta kicks in and stimulates your bone marrow to produce wbcs. One shot is effective for 14 days.

Wonder drug, indeed.

With the neupogen, the bone pain was predictable. Although it didn't start until after the second shot (I got a total of 3 shots), it would begin about 3 or 4 hours or so after the injection and peak in 7-10 hrs or so. Tylenol controlled it, no problem.

With neulasta you don't know when it will kick in, or how much will be released, so you can't predict the bone pain.

Anyway, last night I thought it was starting in my lower back (seemed like it was right where they did my bone marrow biopsy, coincidence?) but it never really hung around even long enough for me to take any tylenol. Nurse said I could take a vicodin if need be. And that there would be no problem mixing vicodin with the lorazepam to help me sleep.

Cankles and moon face are in full force from the prednisone (ain't I pretty?). Just a little bit of hiccups the last three days, that indigestion feeling has been more the issue.

And my regularity feels very regular, thankfully.

And usually I would get the bad taste in my mouth when I ate or drank stuff, now I seem to have it all the time, so I've been eating stuff to mute that, and chewing gum. That's the biggest annoyance for me right now.

Boring, boring, boring, run of the mill post chemo stuff.

Tomorrow morning I'll take my last prednisone dose (hoo-effing-ray!). It's all downhill from there.

Another dermatology wart blasting fiesta is on tap for this afternoon.

CHEMO NO. 6: 11-15-2010, it's up, and it's good

CHEMO NO. 6: 11-15-2010, it's up, and it's good


>>PROFUSELY ILLUSTRATED!<<

Magic Wheel, Chapter 1

I always look on craigslist for bikes.... I only have 3, a mountain bike, a road bike, and a tandem. So I need some more bikes, right? And my nephew Bob would like me to find a nice bike for him, so I always look. Isn't there some saying like 'when you stop looking, you might as well be dead'? Maybe that's for something else...

Anyway, last week on craigslist I ran across an ad for a "Magic Wheel". As you know, there is a sucker born every minute, and I certainly qualify. I googled Magic Wheel and found some very cool videos which proved the MagicWheel is very easy to ride. So I talked the seller down to $35 from $40 and bought it. A real wheeler dealer, I am. Pun totally intended.



What was I thinking? Well, last year when my road biking season was over, I was rollerblading. Excellent exercise and a lot of fun. Problem is finding somewhere with smooth enough pavement / sidewalks. So the genius of the magic wheel is that it EATS THE BUMPS UP, don't you see? Why didn't anybody think of this before? It's a 26" bike wheel that you ride like a scooter. It's a revelation! Watch the videos on youtube, man, this is child's play!

So I met the lady in the Starbucks parking lot in Wheaton. On further review, said Magic Wheel was in excellent condition, hardly even any scratches (there was a clue there, but I missed it). Said her 15 year old son had a riot on it (another clue, he's 15, I'm 15 x 3 and then some, Earth to Steve, Come In, Steve!). I handed over the money and burned rubber before she could change her mind.

Oh yeah, I'm so freakin' smart! All that's left is riding it all over town, impressing everyone with my uncanny balance and suave manner... 'Look at the old man, riding it like he's 15. And that sorry sonofabitch has cancer! If that moron can ride it, I can fly it, to Pittsburgh! I gotta get me some MagicWheel!'

Magic Wheel, Chapter 2 (wherein the author is revealed to be an Idiot and gets His ComeUppance)

There's only one problem with the Magic Wheel: It's UnRideAble! I can't ride it. Julie can't ride it (but, I didn't marry her for her physical prowess. I married her because she looks good in ... Oh, did I start to say that out loud?). Eric (young, hipster, BMXer, Fireman, Man About Town) can't ride it. Noah (13 years old, Fearless MadManOnBike) can't ride it.

We're all in love with it. But none of us can ride it. So I guess the truth is that we're not so much in love with it as we are in love with the -idea of it-. If that makes any sense.

I keep telling myself it will come to me. So far It hasn't. I watch the videos, IT'S SO FREAKIN' EASY. A FREAKIN' GUY RIDES IT ON THE FREAKIN' SIDEWALK, weaving through FREAKIN' people, one hand holding a FREAKIN' ICE CREAM CONE, talkin' on his FREAKIN' CELL PHONE! So, wtf is FREAKIN' wrong with me?

And, all due respect to the seller, I believe she lied about her son riding it. Why? Because it had a grand total of about 2 scratches on the whole thing. In 10 minutes I dumped it about 30 times and put scratches on it every time. It's a mess with scratches. Its scratches have scratches, I tell you.

I can ride a little ways and then lose it and crash. It's not like rollerblades where you fear pinwheeling and falling backwards (with potentially fatal results if you don't wear a helmet). You just jump off when you lose it and grab the handle and pick it up or you just let it go crash.

It's a total bee-otch. I haven't given up but it's a head scratcher. I'm hoping Eric or Noah figure it out and then we'll do the VucanMindMeld.

Maybe it should be called MagicallyMakeYour35DollarsDisappear or MagicRipOff, or something.

Because "Oh-So-Smart-Steve" is being proven to be "Oh-So-Freakin'-Stupid-Man-Child-Who-Will-Never-Grow-Up-Steve". I admit it. I'm a Moron, with a capital M.

**

Saturday past the local HS (Sandwich) had a quarterfinal playoff football game against Mendota. I grew up in Mendota (Trojan Man! Yes, they are the Trojans) but have lived in Sandwich for the last mumble-mumble-and-such years. My kids went through Sandwich schools. We know some people / have some relatives whose kids play for Sandwich. Austin and I had gone to the last playoff game, a last second stunner that Sandwich won with a field goal as time ran out.

So Julie's cousin Jan offered to watch Tessa, and Julie and I went to the game. Austin went too, but his parents weren't Kool enough Kompany so he rode in Bob and Jori's Kar.

And, like many men, I didn't speak of my Trojan past. Unless someone asked.

The game was in Mendota. I hadn't been at a game there in roughly mumble-mumble-and-such years, so it was weird to sit there in that joint again. Weird not to be cheering for the purple and gold but rather the orange and black.

Sandwich dismantled Mendota 42-13, game story HERE. If they can win one more game they'll play for the State Crown the Saturday after Thanksgiving. Knowing some of the people involved and their stories and struggles, I really hope they make it. It's a feel good story on a lot of levels.

Another story HERE.

Go Indians!

**
I'm a mucker, I'm a grinder, I'm a loose puck finder:

I helped my great niece Hallie with her science project and she drew me a cute picture and wrote me a nice note (pret' near made me cry) to thank me and got me a coffee grinder, which I have really been jonesin' for. She brought it over tonight and we brewed a fresh batch of french vanilla (she supplied the beans also).

The fresh ground is every bit as good as I thought it would be. That's livin', baby!

Halz and I enjoyed it very much (she is allowed to drink a little bit and only occasionally as she's just 9.).



**

My father's brother's wife, my Aunt Charlotte, was 92. I got a call from my sister while I was in chemo this afternoon telling me that she died. She had been in an assisted living facility. Her daughter told my sister that after my uncle died, and then when she couldn't golf anymore, her passion for life kind of slipped away.

A couple of years ago we had a family reunion for our immediate family and my mom brought my Aunt Charlotte. We asked if she wanted to play Hillbilly Golf and she jumped right up, even though she had never played before. At 89 years old, in the summer heat and sun, and with a cane to steady her, she played her first game. She even made the winning throw! A gamer right to the end, she was. And 92 is a pretty good run, God bless her.


We'll miss her. All the best to her family.

Her obit is HERE

**

My mom as I've 'blogged, has been having quite a tough time herself. At 86, she's struggling with COPD, post concussion issues and a broken arm, among other things. She just got out of the nursing home on a rehab assignment.

At this point, someone is with her pretty much 24x7. From my mom and dad's families, my mother is the last of the generation, and although she hasn't verbalized that particular thought, I'm sure she's thinking it.

She took the news of her sister in law passing very hard. There's just no way to soften the blow.


My Aunt Charlotte on the left, my mom on the right.

**

Since my diagnosis:

Today I was thinking about how much has transpired since I was diagnosed in June. I had the whole "black period" between discovery, not knowing, diagnosis and prognosis. Then everything changed when we got a very good prognosis.

Then I worried about getting sick. But then I was sooo fortunate not to get very sick. And (so far, knock wood) we've gotten very, very good results with the chemotherapy.

Quite a whirlwind in a very short period of time.

Now I feel like, barring a comeback by the Non Hodgkins Lymphoma, the worst of -this- is over. The nurse was telling me today that I should have minimal side effects because the ritauxin is the least offensive of the chemo drugs and ritauxin is all I'll get in maintenance.

So, that's all good, obviously. But from a personal perspective, the seal has been broken. I'm officially mortal. Even though I've known that I'm mortal since I was old enough to contemplate and understand the concept, staring down the barrel, so to speak, has changed me, I'm sure. Imagining what it will feel like (staring down that barrel) is only theory. Experiencing it is another (very different) thing.

I don't believe that I will ever be "shocked" to hear that I have a medical condition that will end me. I don't believe that contracting another cancer (or having the same cancer come back again), or a heart condition, or having a "grabber" that ends it all while riding my bike would come as any great surprise to me. It will be more of a grudging acceptance, or maybe the thought will occur to me "oh, so -this- is how it ends".

That's not to imply that fear won't be present, I'm sure it will, if I'm conscious. But no shock, no "why me, why now?". That's for young people unfortunate enough to be "called home" early.

I'm not young and it's not early.

I think and hope that I have a new appreciation for life and am able to enjoy every minute of every day in a way I couldn't before.

My good fortune is not lost on me.

But Steve the person is still a work in progress. And I will be until the day I die.

**

There was a guy in a wheelchair today at the cancer center, with oxygen and his faithful wife by his side. He was 71, I think he said. He didn't want to be late for his visiting nurse at home, and so he had to get out of the clinic. "Don't you like it here?" I kidded him. He said he liked it fine, but they were "taking" him, "inch by inch" with so many appointments.

He said the doctors had told him he had 6 months to live, but he had proven them wrong. He said he had outlived the doctors' projections just so he could make his wife miserable. He said she wouldn't know what to do without him, and they both laughed.

SOME PERSPECTIVE, subtitled: THERE BUT FOR THE GRACE OF GOD GO I:

In the waiting area, sometimes you can't help but overhear some of the conversations. Today a lady I would guess was about my age walked up to the desk to talk to the receptionist. The conversation went like this:

"I need the Doctor to write a letter stating that I have terminal cancer. If I don't get the letter my daughter in law will get a reprimand. If the doctor can't or won't write it I will go to my Primary Care Physician and see if he will write it."

This lady was very calm and matter of fact. Her voice didn't reveal any emotion. No anger and no fear. Just very business like. Evidently she's had some time to get her mind around her situation.

What I asked myself at that moment was: What in the hell would I have to complain about?

She got the letter.

**

MY IMMEDIATE FAMILY

Julie, I think, has her mind in a pretty good spot regarding my condition. We both feel good about what modern medicine has done for me and are cautiously optimistic going forward.

Austin always asks me how my port "feels". He calls it my "medicine". He was getting ready for bed tonight and I heard him asking Julie "How's Dad feel?". Sometimes it is easier for him to approach a thorny problem indirectly. I think he was on to the fact that my final regular chemo was in the works. What I think would make him feel good would be for me to get the port removed because it's the only really visible evidence for him that I have a medical issue.

I know I haven't 'blogged hardly at all about my daughter, Tessa. Tessa is 18 and is autistic. Tessa is pretty much oblivious to my condition. Autism is a curse in most ways but maybe in situations like this it's a blessing since she is barely if at all impacted by it. Since my 'blog is about my illness and how it affects me and others, I guess she's been pretty much left out. But it's not because I don't love her dearly, because I do. It's because my illness has not had any visible impact on her.



She is and always will be my baby girl. She can be a handful (autism can be like that) but we love her very much and we get all that and more back from her. She's very affectionate and getting a hug and a kiss from her means the world to me. And believe me, I thought very much about how painful it would be to leave her (and everyone else) behind before I got my (favorable) prognosis. So while I can't say what she thinks, hopefully she's been spared all the drama.

She's got her own little world and she's happy in it. I would like for that to continue regardless of my situation.

**

Oh yeah, my chemo...

The chemo today started late but went well. Everyone there congratulated me and made me feel special because I got through it. Nice bunch of people, very professional and friendly. Can't say enough about them.

Strangely enough I did not see the doctor today.

I'll chart my counts soon.

**


It's 12:28 as I write this and the absinthe is really working... I mean the Prednisone is really working. Not floating but wired. I need to take a sleeping pill and hit the hay.

**

I plan to keep 'blogging on some kind of regular basis. Obviously if "it" is shown to be "back" I will post that here. And PET scan results will show up here, too.

If you have a gmail login you can subscribe to the 'blog and you'll get an email when it gets updated. If you'd prefer for me to send you an email when I update the 'blog I can do that (let me know via email: ninthcole@hotmail.com).

I mention these things because the nature of this thing is that I will probably 'blog at least a little less frequently. But I really do plan on still 'blogging as I often as I feel the need.

THANKS FOR YOUR SUPPORT. I really appreciate it and it has done my spirits good to know I have so many people supporting me.

&

If anyone knows someone that they think might benefit from talking to me, please let me know. I would be glad to share my experiences if it might help: ninthcole@hotmail.com

My email address is also in my profile.


**

DON'T FORGET TO SCHEDULE YOUR CHECKUP!

11-08-2010 the ki-boshed kemo

11-08-2010 the ki-boshed kemo

So, I was all ready this morning for my 6th chemo, which would be my last until May when I would start maintenance.

I got my port tapped, blood drawn, vitals taken, talked to the doctor, and was sent back to the treatment area where I proceeded to get my laptop set up and started surfing directv.

And then the nurse came and gave me the bad news: My levels were too low to allow chemo.

!

WBCs were 2.2 I think, and the gran abs were like 0.6. The doctor pulled the chemo order after seeing that. They are going to have me come back next week. The nurse said my levels should slowly climb back up, and that my situation was not unusual. She said to take the regular precautions with low WBCs and that I wouldn't get another neupogen shot.

I was surprised because the nurse had told me last week that my levels may keep climbing and be out of range too high, but the opposite turned out to be true.

BUMMER! I was sooooooooooooooooooo looking forward to getting number 6 done and taking a 6 month "vacay" from chemo. Instead, I'll just cool my heels and wait.

Thanks for checking in.

Steve

11-05-2010 NEUPOGEN, it does a body good.

11-05-2010 NEUPOGEN, it does a body good!

Per my cell phone update yesterday (I'm taking that down, they are rather cryptic) my wbcs are back up and chemo is on for Monday. Looking forward to finishing up and taking 6 months off!

Neupogen worked for me, dramatically. I am no longer petering.

Charts below, notice the huge jump in wbc but huge-er jump in gran abs, 450% increase in 3 days!

Neupogen, it really does do a body good. I guess it was that or a plastic bubble.

Had a little bit of bone ache after the last injection, but it wasn't very bad at all.

Got my flu shot yesterday, too.

Have a great weekend.

11-03-2010 PETERING, ILLUSTRATED

11-03-2010 PETERING, ILLUSTRATED

Here are my charts, click on to view larger, use browser's back button to return.


My petering is unmistakable.

**
My temp has been good, always BELOW 98.6, so far so good. Last night about 8 I started feeling the pain in my bones. I went to bed and woke up about midnight and flopped around uncomfortably. Finally about 2 AM I got up, really feeling it. It was an overall ache, painful to walk, and REALLY painful to sit. Seemed when I sat that the pain was concentrated in my lower back. I took a couple tylenols and watched some election returns. After a while I was able to go to sleep. The tylenol dosing was for 8 hours so I made sure to get another dose later when the first one ran out.

No problems today other than being a little fatigued late in the afternoon. After work, I stopped by the clinic for my 3rd neupogen injection. The nurse said my levels should come back up so I can get my chemo Monday. Also, after they check levels tomorrow, if they're high enough they'll give me my flu shot. I don't know if they'll continue with the neupogen or not.

Tonight I'll take tylenol before I go to bed and hope for the best.

That's about it.

**
I DID wind up voting yesterday. Hopeless feeling, really. People say you can't complain if you don't vote. I'd buy into that if I didn't pay taxes, but I do.

Plus if you DO vote and your candidate disappoints (most all do), does that mean you can't complain? I think not.

I say complain all you want, regardless. It's the American Way.

**

Thanks for stoppin' by.

11-01-2010 Bad Blood

11-01-2010 Bad Blood

Weekend was mostly uneventful.

Saturday I had a couple projects around the house I worked on.

Then Eric (my nephew Bob's nephew) got an Antoine Dodson Halloween costume (search for A.D. on youtube in case you care) and asked for help tying his do-rag.

Since the costume consisted of a black tank, a black wig, and a do-rag, I decided to suit up. It was good for a laugh, anyway.


**

Sunday, Halloween, we visited my mom. It was my sister Mary's birthday (Witch!) and she and her daughter Kate had driven home from S-Carolina to hang with my mom. So we had a nice visit with them and my bro' Ed. Had some birthday cake, too. My mom's doing very well since getting back home on Thursday.

**

Today, back to work and then after work... my levels. It was all going so good, too.

Evidently the chemo drugs have engaged in a successful get whitey campaign, because my white blood cells are 2.3 and my grans abs (best white cells) are 0.4. Those numbers would be, yeah, not s'good.

I got a neupogen injection this aftn, and that will be repeated Tue/Wed, followed by another blood draw on Thursday to see how I'm doing. The neupogen is supposed to stimulate the bone marrow to make white blood cells, as I understand it.

Nurse said I'm to take my temp regularly and if it gets above 100.4 I must call them immediately as waiting could earn me a hospital visit(!). Plus the usual: avoid crowds, wash, wash, wash my hands , stay away from germy people (daughter Tessa's got a horrible cold right now, so good luck w/that). She asked if I was feeling OK, and truthfully I have been.

She also said the neupogen could make me achy.

So I got that goin' for me.

Which is nice.

My luck's run out. Hopefully we'll get the counts back up and I won't have any complications and won't have to miss a chemo session.

And, there go my biking sessions for the week as clinic visits will mean I won't get home till too late to bother. Oh well, it's getting cold and we might get snow later in the week anyway.

Woe is me. Maybe I'll just start drinking. Heavily.

But seriously, it's a minor setback. A flesh wound. A fly hitting a Mack truck.

**

Here's the whole lowdown on the counts (this is where I always promise to update my chart) wbc2.3, rbc 4.34, hemo 13.0, platelets 143, gran abs 0.4.

**

The nurse that does my blood draws is a cyclist also and we always compare rides. She was out in the gale force winds last week, too. So there's plenty of crazy to go around, evidently.

**

Elections tomorrow and I honestly don't even know if I can bring myself to vote. I'm really sick of the process and sick of the politicians, dems and repubs, and really think that the only thing I'm really SURE of is that our system doesn't work any longer.

The repubs get in power and stick it up the dems giggys and then the dems get in power and proceed to return the favor. No real sense of compromise for the greater good, just partisan, partisan, partisan politics. I hear their campaign lies and they make me sick, and I hear their patriotic music playing in the background and it makes me sick and the whole thing is disgusting.

And the repub guy who said the biggest goal they'll have now is to make sure Obama doesn't get re-elected. Wait, that's two years from now... so what you're saying is that you won't do anything for two years? Actually I don't think anyone is surprised. And the sleazebag proved my point: moving the country forward in a positive direction is not nearly as important as getting in power and staying in power.

And the dems said plenty of stupid things, too.

But while it's easy to blame individuals and/or parties, I should more likely blame the system. All the pols have figured how to use the system to their personal advantage. THE SYSTEM DOESN'T WORK for the electorate, it works for THE ELECTED.

Anyway, that's how I feel. Maybe now I'm off the hook for voting because I shouldn't expose myself to all those germs at the polls. Lucky me! I can't tell one crook from another anyway, so what's the point?

**

Have a great week anyway.

The Count