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!
Sunday, November 28, 2010
Thursday, November 18, 2010
11-18-2010 Cankle Cam
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.
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.
Monday, November 15, 2010
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!
>>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!
Monday, November 8, 2010
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
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
Friday, November 5, 2010
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.
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.
Wednesday, November 3, 2010
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.
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.
Monday, November 1, 2010
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
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
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