06-03-2011
Kind of slept in this morning, didn't get to work until almost 8 (usually I get there around 6).
I guess I'm still dragging a little bit.
Also today I'm noticing my mouth is a little tender from the chemo.
I did about 20 miles on the bike after work. More of our windy weather.
So, I did climb the hill tonight, about 16 miles into my ride. 1 time and it kicked my ass. Last year I kicked it's ass. Easily. And repeatedly.
Very depressing.
I have lots of work to do.
Friday, June 3, 2011
Thursday, June 2, 2011
06-02-2011
06-02-2011
Had my chemo today. They ramped the infusion up this time and I was out of the chair before 3:00, as opposed to last time when it was after 4:00.
My nurse was J., the lady who's a cyclist. We caught up on each other's cycling escapades. J. has over 500 miles this year, I have some catching up to do.
I slept quite a bit. Julie brought me lunch. I slept a bit more.
When it was over, I headed home. To sleep. About 6-ish I started to feel a little more energetic. I feel fine now (10:50), taste is a bit funky, as usual.
Tessa's medication was changed and she was having some difficulty so we brought her home tonight. We're working with the agency to get her squared away but until we do she won't be going back. They were trying a new medicine for OCD and either the dosage or the medicine itself did not agree with her.
The good news is that we got regular, same day feedback from people who care about Tessa and it became obvious pretty quickly that we couldn't stay that particular course. So, back to the drawing board on that. The change was done with the best of intentions but it just didn't work out. We're hoping to get it resolved quickly for everyone's sake.
Friday tomorrow already! Looking forward to the weekend.
Take care.
S.
Had my chemo today. They ramped the infusion up this time and I was out of the chair before 3:00, as opposed to last time when it was after 4:00.
My nurse was J., the lady who's a cyclist. We caught up on each other's cycling escapades. J. has over 500 miles this year, I have some catching up to do.
I slept quite a bit. Julie brought me lunch. I slept a bit more.
When it was over, I headed home. To sleep. About 6-ish I started to feel a little more energetic. I feel fine now (10:50), taste is a bit funky, as usual.
Tessa's medication was changed and she was having some difficulty so we brought her home tonight. We're working with the agency to get her squared away but until we do she won't be going back. They were trying a new medicine for OCD and either the dosage or the medicine itself did not agree with her.
The good news is that we got regular, same day feedback from people who care about Tessa and it became obvious pretty quickly that we couldn't stay that particular course. So, back to the drawing board on that. The change was done with the best of intentions but it just didn't work out. We're hoping to get it resolved quickly for everyone's sake.
Friday tomorrow already! Looking forward to the weekend.
Take care.
S.
Wednesday, June 1, 2011
06-01-2011
06-01-2011
Chemo tomorrow, I sure hope this time it goes by faster than last week.
We have so much sunlight now! I got in a nice, pretty long ride tonight, and I didn't even leave home until about 6:00. The next 6 weeks or so is primo "come home from work and hit the road on your bike" time just because it stays light so long.
I was pondering tonight on my ride the difference between this year and last year, bike wise.
I am doing OK this year, but I was doing much better last year. Don't know how to explain it, maybe it's just getting a slower start due to the weather, maybe it's being 12 months older, maybe it's chemo fallout. But whatever it is, I don't have the explosiveness (if a 50+ year old guy can still have such a thing) that I had last year. And I had it even while I was right in the middle of chemo, I felt great.
Hopefully I'll get my mojo back if I just keep riding.
One specific thing I remember is climbing one of my favorite hills last year and just tearing it up, going back over and over just for the challenge.
This year, so far, I have pretty much avoided that hill. Maybe I should just give it a go, could be it's all in my head.
***
I talked to our pool guy tonight and he's thinking our bottom drain may have bought the farm. If that's the case, it might be a quick, easy, and cheap fix. He's coming by Saturday to check it out. Light a candle for us, won't you?
***
Sorry I don't have any pictures tonight to spice up my boring 'blog.
Oh wait, Julie took a cool picture of Austin jumpin' on the trampoline today:
Trampoline jump shots are all the rage around here since they took some cool shots on Memorial Day.
And that was my cheap attempt to spice up my boring 'blog with an action shot of my son.
Thanks for stopping by. Catch you later.
Chemo tomorrow, I sure hope this time it goes by faster than last week.
We have so much sunlight now! I got in a nice, pretty long ride tonight, and I didn't even leave home until about 6:00. The next 6 weeks or so is primo "come home from work and hit the road on your bike" time just because it stays light so long.
I was pondering tonight on my ride the difference between this year and last year, bike wise.
I am doing OK this year, but I was doing much better last year. Don't know how to explain it, maybe it's just getting a slower start due to the weather, maybe it's being 12 months older, maybe it's chemo fallout. But whatever it is, I don't have the explosiveness (if a 50+ year old guy can still have such a thing) that I had last year. And I had it even while I was right in the middle of chemo, I felt great.
Hopefully I'll get my mojo back if I just keep riding.
One specific thing I remember is climbing one of my favorite hills last year and just tearing it up, going back over and over just for the challenge.
This year, so far, I have pretty much avoided that hill. Maybe I should just give it a go, could be it's all in my head.
***
I talked to our pool guy tonight and he's thinking our bottom drain may have bought the farm. If that's the case, it might be a quick, easy, and cheap fix. He's coming by Saturday to check it out. Light a candle for us, won't you?
***
Sorry I don't have any pictures tonight to spice up my boring 'blog.
Oh wait, Julie took a cool picture of Austin jumpin' on the trampoline today:
Trampoline jump shots are all the rage around here since they took some cool shots on Memorial Day.
And that was my cheap attempt to spice up my boring 'blog with an action shot of my son.
Thanks for stopping by. Catch you later.
Tuesday, May 31, 2011
05-31-2011
05-31-2011
Yesterday, Memorial Day, was super windy here in Northern Illinois. And it was 90+ degrees. I love riding when it's hot, so I wasn't gonna miss the chance.
I managed to squeeze out about 31 miles on my road bike. It was a real struggle because when the wind wasn't directly in my face, there was such a strong crosswind that it really slowed me down.
I am soooo lucky to have wide open country roads to ride. This picture probably makes it look boring, but it is NOT.
I really noticed a lot of tingling in both feet while I was riding, which I guess is more neuropathy from the chemo. It hasn't bothered me much otherwise. The doctor said he could give me something if that gets to be a problem, but if riding is the only issue, I'll just let it go.
My yearly odometer is at about 320 miles and climbing. Hopefully we'll get some good weather and I can start racking up the rides.
We got lots of rain Saturday, and when I rode by the local golf course I saw that it was closed due to flooding.
Got home and Julie had lined up a party. Had some family and friends over, and we had a cook out and sat around our pool. Some played bags, some swam, some logged a little trampoline time, all seemed to enjoy themselves.
This morning I think everyone was a little sunburnt and tired from a nice long Memorial Day weekend.
And then tonight I uncorked the pool filter to help Julie with cleaning the pool and... we have a leak! There is sand in our water and I am 99.9 % sure there's a tear in the liner. Another word for pool is "money pit". ARRRGGGGGGGGGGGGGGGH!
So, to sum up, I've been feeling fine (other than the whole pool issue). Next chemo is Thursday.
Hope you had a nice holiday weekend.
Yesterday, Memorial Day, was super windy here in Northern Illinois. And it was 90+ degrees. I love riding when it's hot, so I wasn't gonna miss the chance.
I managed to squeeze out about 31 miles on my road bike. It was a real struggle because when the wind wasn't directly in my face, there was such a strong crosswind that it really slowed me down.
I am soooo lucky to have wide open country roads to ride. This picture probably makes it look boring, but it is NOT.
I really noticed a lot of tingling in both feet while I was riding, which I guess is more neuropathy from the chemo. It hasn't bothered me much otherwise. The doctor said he could give me something if that gets to be a problem, but if riding is the only issue, I'll just let it go.My yearly odometer is at about 320 miles and climbing. Hopefully we'll get some good weather and I can start racking up the rides.
We got lots of rain Saturday, and when I rode by the local golf course I saw that it was closed due to flooding.
Got home and Julie had lined up a party. Had some family and friends over, and we had a cook out and sat around our pool. Some played bags, some swam, some logged a little trampoline time, all seemed to enjoy themselves.
This morning I think everyone was a little sunburnt and tired from a nice long Memorial Day weekend.
And then tonight I uncorked the pool filter to help Julie with cleaning the pool and... we have a leak! There is sand in our water and I am 99.9 % sure there's a tear in the liner. Another word for pool is "money pit". ARRRGGGGGGGGGGGGGGGH!
So, to sum up, I've been feeling fine (other than the whole pool issue). Next chemo is Thursday.
Hope you had a nice holiday weekend.
Saturday, May 28, 2011
05-28-2011
05-28-2011
Two days since chemo and I've been feeling pretty good. Got a quick 19 miles in on the bike after work last night. I actually felt great and would have gone farther but was afraid of getting caught in the rain on my beloved Cannondale (The Princess).
Just to break up the monotony of text, text, text, here's a boring, repetitive, already been done, predictable, you name it, kind of picture from my ride, from the bridge across the Fox at Millington:
Then I came home and mowed the front yard before dark. When I got off the tractor, I was really aware of my fingers humming, like MAD. Wonder if that's a little fallout from the chemo mixed with the vibration from the tractor?
This morning about 5:30 Tessa climbed into bed with Julie and I so I went out and racked on the couch and slept til about 9:30 which is unheard of for me. It was awesome to sleep in but Julie warned me that there will NOT be a repeat performance tomorrow. Tomorrow it's HER turn. Which is fine.
After I got up, I mowed the back yard and worked on a few things. I spent hours running some wires for outdoor speakers on our patio, partly in the rain.
We took Austin and Tessa to get something to eat and I brought a bowl of Wendy's chili back to feast on. For $1.29 you can't beat it. And it tasted good on a rainy and chilly May evening.
I think it's supposed to be rainy again tomorrow, but Memorial Day is supposed to be dry and hot and I am DEFINITELY planning a bike excursion.
***
*Perspective for Memorial Day, #I
A few weeks ago, one of the drivers at the company where I work got the flu. He went to the doctor and they treated him and sent him home. He didn't get better so he went to the doctor and they treated him again and sent him home, AGAIN. He still didn't get better so he went back to the doctor for the third time and this time he was admitted to the hospital.
Eighteen days later he died. Tommy was 31 and left behind 4 children.
The old cliche about "you just never know" is not a cliche, it's a fact.
Tommy's story is HERE
*Perspective for Memorial Day, #II
I have an acquaintance through work that I have to call about once a month. Even though we've never met in person, I feel like I know Alex. He works for one of our customers in far Northern Illinois and lives in Wisconsin. He and his wife enjoy bicycling so we are always swapping stories about that. We also talk about politics, family, the direction of our country and the world. His mother died recently and we had a talk about the meaning of life, etc.
Yesterday I called to check on a business matter. Then, as always, the call turned to "what have you got planned for this weekend?" kind of stuff. When I talk to Alex, the business stuff, although important, is just background, the real meat of the matter is when we discuss what's going on in our lives.
Alex told me that on Memorial Day, he and his wife are going to Wood National Cemetery in Milwaukee to visit the grave of a fallen hero. He and his wife knew this soldier and have known her family for some time. Michelle Witmer was the first woman in the history of the Wisconsin National Guard to die in combat.
Spc. Michelle Witmer's story is HERE
***
When I think about Tommy dying at 31, my battle with cancer beginning at age 52 pales by comparison.
And when I think of the Whitmers losing their 20 year old daughter and sister, our anguish over our daughter moving 2 miles away really seems insignificant.
Really, in view of Tommy's story and Spc. Michelle Witmer's story, how trivial are my problems?
My mom used to say "if you feel sorry for yourself because you don't have any shoes, wait til you meet someone who doesn't have any feet".
Indeed.
Two days since chemo and I've been feeling pretty good. Got a quick 19 miles in on the bike after work last night. I actually felt great and would have gone farther but was afraid of getting caught in the rain on my beloved Cannondale (The Princess).
Just to break up the monotony of text, text, text, here's a boring, repetitive, already been done, predictable, you name it, kind of picture from my ride, from the bridge across the Fox at Millington:
Then I came home and mowed the front yard before dark. When I got off the tractor, I was really aware of my fingers humming, like MAD. Wonder if that's a little fallout from the chemo mixed with the vibration from the tractor?
This morning about 5:30 Tessa climbed into bed with Julie and I so I went out and racked on the couch and slept til about 9:30 which is unheard of for me. It was awesome to sleep in but Julie warned me that there will NOT be a repeat performance tomorrow. Tomorrow it's HER turn. Which is fine.
After I got up, I mowed the back yard and worked on a few things. I spent hours running some wires for outdoor speakers on our patio, partly in the rain.
We took Austin and Tessa to get something to eat and I brought a bowl of Wendy's chili back to feast on. For $1.29 you can't beat it. And it tasted good on a rainy and chilly May evening.
I think it's supposed to be rainy again tomorrow, but Memorial Day is supposed to be dry and hot and I am DEFINITELY planning a bike excursion.
***
*Perspective for Memorial Day, #I
A few weeks ago, one of the drivers at the company where I work got the flu. He went to the doctor and they treated him and sent him home. He didn't get better so he went to the doctor and they treated him again and sent him home, AGAIN. He still didn't get better so he went back to the doctor for the third time and this time he was admitted to the hospital.
Eighteen days later he died. Tommy was 31 and left behind 4 children.
The old cliche about "you just never know" is not a cliche, it's a fact.
Tommy's story is HERE
*Perspective for Memorial Day, #II
I have an acquaintance through work that I have to call about once a month. Even though we've never met in person, I feel like I know Alex. He works for one of our customers in far Northern Illinois and lives in Wisconsin. He and his wife enjoy bicycling so we are always swapping stories about that. We also talk about politics, family, the direction of our country and the world. His mother died recently and we had a talk about the meaning of life, etc.
Yesterday I called to check on a business matter. Then, as always, the call turned to "what have you got planned for this weekend?" kind of stuff. When I talk to Alex, the business stuff, although important, is just background, the real meat of the matter is when we discuss what's going on in our lives.
Alex told me that on Memorial Day, he and his wife are going to Wood National Cemetery in Milwaukee to visit the grave of a fallen hero. He and his wife knew this soldier and have known her family for some time. Michelle Witmer was the first woman in the history of the Wisconsin National Guard to die in combat.
Spc. Michelle Witmer's story is HERE
***
When I think about Tommy dying at 31, my battle with cancer beginning at age 52 pales by comparison.
And when I think of the Whitmers losing their 20 year old daughter and sister, our anguish over our daughter moving 2 miles away really seems insignificant.
Really, in view of Tommy's story and Spc. Michelle Witmer's story, how trivial are my problems?
My mom used to say "if you feel sorry for yourself because you don't have any shoes, wait til you meet someone who doesn't have any feet".
Indeed.
Friday, May 27, 2011
05-27-2011 Notes from Maintenance Chemo yesterday
05-27-2011 Notes from Maintenance Chemo yesterday
It was good to see the nice folks at the Cancer Care Facility again after 6 months.
All my levels were good, BP was like 120/80, I think (she said it was OK) weight was 201(!), temp 97.8.
Dr. R. was his usual friendly self. He asked how I was: neuropathy?, any tumors returning?, how did I feel?, etc.
I told him I felt like I had gained weight and was surprised that my weight wasn't 210, because that's what I feel like. I hadn't kept up any kind of exercise regimen over the winter and that at this point I've started riding but not like last year what with the weather sucking and all.
He asked me about biking, how far did I go and what kind of bike, etc? We talked about that for a little bit. His bike is presently in the garage with a flat tire. Mine might as well be for all I've ridden it this spring (~270 miles, but I have BIG plans, all I need is good weather).
I asked him about "chemo fog". I told him that I definitely am absent minded and can tell that my short term memory is not what it was. He acknowledged that that could be a problem with chemotherapy. He encouraged me to keep my mind busy, do puzzles or read. I told him I could definitely do the reading, I have a few books that I have been ignoring. And a 'blog, for that matter.
He did a quick exam, then shook my hand and sent me off to chemotherapy.
This session seemed like it lasted forever. I think I got back in the chair at about 11:30 and didn't get out til 4:20. I couldn't stay awake, but I couldn't sleep either. Could not get comfortable and had the chills. Watched TV and logged into work to see what was going on.
All I got was Tylenol, Benadryl and Rituxan. They started the Rituxan out slow so I wouldn't be likely to get a reaction since it had been 6 months since the last time.
Afterwards, I had mild nausea and a little bit of a headache, nothing major. After I got home, I did NOTHING but watch my White Sox and the Bulls and I fell asleep on the couch sometime in the 4th quarter of the Bulls game. I woke up at 2:12 on the couch. Julie told me this morning that she tried to wake me up with no success, which is unusual for me. Wonder if she put a mirror under my nose....
I noticed things seemed to taste a little different last night but this morning I think I'm nearly back to normal (hold the jokes, I know I was NEVER normal).
I'll repeat the process for the next 3 Thursdays, then consult with the doctor after that. Next Pet Scan in about 3 months, more maintenance 3 months after that.
Nice thing about the maintenance is NO PREDNISONE! No puffy face or ankles, no wired feeling, none of that.
So... this DOES sound like a cakewalk.
Memorial Day Weekend is here. Tessa's coming home and we're really looking forward to having her around for a couple days.
I have two biking excursions on the docket, 1 this afternoon and one Sunday, so we'll see how that works out.
I really DO have an outline for some 'blog subjects, so hopefully I'll get to that soon.
HAVE A GREAT WEEKEND! Thanks for checking in.
It was good to see the nice folks at the Cancer Care Facility again after 6 months.
All my levels were good, BP was like 120/80, I think (she said it was OK) weight was 201(!), temp 97.8.
Dr. R. was his usual friendly self. He asked how I was: neuropathy?, any tumors returning?, how did I feel?, etc.
I told him I felt like I had gained weight and was surprised that my weight wasn't 210, because that's what I feel like. I hadn't kept up any kind of exercise regimen over the winter and that at this point I've started riding but not like last year what with the weather sucking and all.
He asked me about biking, how far did I go and what kind of bike, etc? We talked about that for a little bit. His bike is presently in the garage with a flat tire. Mine might as well be for all I've ridden it this spring (~270 miles, but I have BIG plans, all I need is good weather).
I asked him about "chemo fog". I told him that I definitely am absent minded and can tell that my short term memory is not what it was. He acknowledged that that could be a problem with chemotherapy. He encouraged me to keep my mind busy, do puzzles or read. I told him I could definitely do the reading, I have a few books that I have been ignoring. And a 'blog, for that matter.
He did a quick exam, then shook my hand and sent me off to chemotherapy.
This session seemed like it lasted forever. I think I got back in the chair at about 11:30 and didn't get out til 4:20. I couldn't stay awake, but I couldn't sleep either. Could not get comfortable and had the chills. Watched TV and logged into work to see what was going on.
All I got was Tylenol, Benadryl and Rituxan. They started the Rituxan out slow so I wouldn't be likely to get a reaction since it had been 6 months since the last time.
Afterwards, I had mild nausea and a little bit of a headache, nothing major. After I got home, I did NOTHING but watch my White Sox and the Bulls and I fell asleep on the couch sometime in the 4th quarter of the Bulls game. I woke up at 2:12 on the couch. Julie told me this morning that she tried to wake me up with no success, which is unusual for me. Wonder if she put a mirror under my nose....
I noticed things seemed to taste a little different last night but this morning I think I'm nearly back to normal (hold the jokes, I know I was NEVER normal).
I'll repeat the process for the next 3 Thursdays, then consult with the doctor after that. Next Pet Scan in about 3 months, more maintenance 3 months after that.
Nice thing about the maintenance is NO PREDNISONE! No puffy face or ankles, no wired feeling, none of that.
So... this DOES sound like a cakewalk.
Memorial Day Weekend is here. Tessa's coming home and we're really looking forward to having her around for a couple days.
I have two biking excursions on the docket, 1 this afternoon and one Sunday, so we'll see how that works out.
I really DO have an outline for some 'blog subjects, so hopefully I'll get to that soon.
HAVE A GREAT WEEKEND! Thanks for checking in.
Thursday, May 26, 2011
05-26-2011 back in the (chemo) saddle again
05-26-2011 back in the (chemo) saddle again
It's that "maintenance chemo" time of year again. OK, first time for maintenance, there will be 3 more, spaced 6 months apart.
I'm leaving work about 10:30, bloodwork at 11:00, if all goes as planned chemo should start about 11:45 or so and take about 5 hours. I don't know if I get the prednisone this time or not, hoping not.
I really have dropped the ball on m'blog, sorry about that. I will get some updates in here now that I'm back in (chemo)therapy.
Rainy day in No. IL, so I won't miss any good weather or anything.
Hope all is good with you.
More later.
Steve
Sunday, April 17, 2011
4-17-2011
4-17-2011
We went to Tessa's house Saturday morning. Austin and her cousin C-Dubs were happy to see her. And she was happy to see them.
Then we loaded her up for the ride home. It was nice to have her in the house again. Her spirit is really missed when she's gone.
She really took a long look at her room. We changed it around, adding a computer hutch and replacing her bed with a futon.
She loved the idea of having a PC in her room. Here she's on the computer (surfing You Tube for Disney videos) with her happy momma alongside:
And when she got tired, Julie and Austin opened the futon and she was REALLY excited about that.
All in all, everything went well. She seemed happy to be home. She played on her computer and watched her videos. She ate pretty well.
When we took her back to her house, she hesitated to get out of the truck only briefly. It really wasn't too bad at all. We'll have her home again next weekend for Easter. I believe that after a few cycles of this, she'll understand that she'll come home to visit every few weeks. Then the whole thing should be easier on all concerned.
Hope you had a great weekend. Thanks for stoppin' by.
We went to Tessa's house Saturday morning. Austin and her cousin C-Dubs were happy to see her. And she was happy to see them.
Then we loaded her up for the ride home. It was nice to have her in the house again. Her spirit is really missed when she's gone.
She really took a long look at her room. We changed it around, adding a computer hutch and replacing her bed with a futon.
She loved the idea of having a PC in her room. Here she's on the computer (surfing You Tube for Disney videos) with her happy momma alongside:
And when she got tired, Julie and Austin opened the futon and she was REALLY excited about that.
All in all, everything went well. She seemed happy to be home. She played on her computer and watched her videos. She ate pretty well.
When we took her back to her house, she hesitated to get out of the truck only briefly. It really wasn't too bad at all. We'll have her home again next weekend for Easter. I believe that after a few cycles of this, she'll understand that she'll come home to visit every few weeks. Then the whole thing should be easier on all concerned.
Hope you had a great weekend. Thanks for stoppin' by.
Friday, April 15, 2011
04-15-2011
04-15-2011
Tessa Jean
Since my last entry, Tessa is doing fine. She has gotten good reviews from the staff at the house. We call almost every night to check on her. And we have visited her twice each week.
Yesterday the house mother told us she took Tessa to the Dollar store and Tessa was fine. Until it was time to leave. She refused to go out the door. Eventually (after about 20 minutes) the house mother picked up a pack of gum. Bingo, that was what Tessa was holding out for. They paid for the gum and Tessa ~ voluntarily ~ left the store.
Tomorrow morning we'll bring her home for the first time since she moved. She will sleep over Saturday night and we'll take her back Sunday evening. We're hoping that she does OK. One fear we have is that she won't want to get out of our vehicle when we take her back to her new "home". We will have to see how that goes. The house mother thinks she'll be fine.
We will be very careful not to let her "backslide" with food or drink. No diet cokes at our house over the weekend (imagine me doing my Scarlett O'Hara imitation, all dramatic and stuff, back of my hand on my forehead, gasping, voice drenched with despair: "No diet coke! Oh, where will I go, what will I do?"). Like a closet alcoholic, maybe I'll hide some DCokes in the bushes.
Hey, a man's gotta do what a man's gotta do.
Julie and I are very excited to get our darling daughter home for a visit. Austin can't wait. And we're very proud of how well she's done.
***
My buddy Joe
Our IT consultant at work, Joe, has brain cancer. I had 'blogged about him previously. He visited us the other day. It was good to see him. We compared notes on cancer. He and his son had brought me a new PC and Joe was sharp as a tack, as usual. Yesterday I called his office and his Girl Friday said Joe's last scan showed the tumor was not growing and may in fact be shrinking. He's still getting chemo. This after brain surgery, radiation mixed with chemo... followed by blood clots and seizures. He's had a hell of a time, he's fought like hell, and he's got a lot of people rooting for him. All my best to Joe.
***
Century 'blog!
According to the right hand side of the page, this is my 100th 'blog entry! Who woulda thunk? I started this to chronicle my journey through cancer and the scope has gotten wider as time has gone on. I guess I've come to see this as kind of my open diary. I've been all over the map, subject wise, haven't I? I hope it's been at least somewhat interesting at times, but I'm sure some of it has been just one colossal bore, because that's what I think when I read back over it.
And I guess I was prolific: Last July I posted 37 entries! Sheesh, I do go on, don't I?
But I will tell you one thing: It's been therapeutic, cathartic, whatever you want to call it. For some reason it just helps to be able to express myself sometimes, I guess whether I think anyone reads it or not. And, I'm not sure how many people read it, but I do get some feedback from time to time, which is great and I appreciate it.
Originally I started this for a couple reasons. One was in case anyone else found themselves in a similar situation (cancer), I thought this may help them understand what to expect. The other was that I thought it would be easier to 'blog ONE time than call 30 people and tell them all the same story. The part about it being therapeutic was somewhat of an unexpected bonus.
I've always admired well written stories, books, screenplays, etc. and thought it might be fun to see what I could come up with myself. I think that the main thing for me to write something that's readable is that I have to be motivated. If I am motivated, I have a chance. With no motivation, it's very difficult for me to crank something out.
And, here's a crazy thing that motivated me: Julie and I will never have grandchildren. It is a goofy thing, but it occurs to me that when I'm gone, NO ONE will trace their ancestry back to me. No one will look at an old picture of me and say "I descended from HIM". Or, "that was my grandpa" or great grandfather, etc. (oh look, a biological clock kicking in a little late, at 53). I guess there's a part of me that would like to leave SOME record that I was around and document my life and my immediate family's life. But I'm not sure why.
***
Do you believe in God? Do you think there's an afterlife? If there's no afterlife, for people like Julie and I, our DNA has hit a dead end. In many ways, this is it. Strange to contemplate. And if your mind winds up there, next is what's it all about, this "life"? Just what was the point? That question was probably asked by cavemen and it's still being asked now.
I guess that could be another entire 'blog entry by itself. And that can bounce around in your head for a long time, especially when your daughter moves out and you start to see time passing at a blistering pace.
Or maybe I'm just crazy.
***
Thanks for riding with me, take care of yourselves, hope to see you soon.
Tessa Jean
Since my last entry, Tessa is doing fine. She has gotten good reviews from the staff at the house. We call almost every night to check on her. And we have visited her twice each week.
Yesterday the house mother told us she took Tessa to the Dollar store and Tessa was fine. Until it was time to leave. She refused to go out the door. Eventually (after about 20 minutes) the house mother picked up a pack of gum. Bingo, that was what Tessa was holding out for. They paid for the gum and Tessa ~ voluntarily ~ left the store.
Tomorrow morning we'll bring her home for the first time since she moved. She will sleep over Saturday night and we'll take her back Sunday evening. We're hoping that she does OK. One fear we have is that she won't want to get out of our vehicle when we take her back to her new "home". We will have to see how that goes. The house mother thinks she'll be fine.
We will be very careful not to let her "backslide" with food or drink. No diet cokes at our house over the weekend (imagine me doing my Scarlett O'Hara imitation, all dramatic and stuff, back of my hand on my forehead, gasping, voice drenched with despair: "No diet coke! Oh, where will I go, what will I do?"). Like a closet alcoholic, maybe I'll hide some DCokes in the bushes.
Hey, a man's gotta do what a man's gotta do.
Julie and I are very excited to get our darling daughter home for a visit. Austin can't wait. And we're very proud of how well she's done.
***
My buddy Joe
Our IT consultant at work, Joe, has brain cancer. I had 'blogged about him previously. He visited us the other day. It was good to see him. We compared notes on cancer. He and his son had brought me a new PC and Joe was sharp as a tack, as usual. Yesterday I called his office and his Girl Friday said Joe's last scan showed the tumor was not growing and may in fact be shrinking. He's still getting chemo. This after brain surgery, radiation mixed with chemo... followed by blood clots and seizures. He's had a hell of a time, he's fought like hell, and he's got a lot of people rooting for him. All my best to Joe.
***
Century 'blog!
According to the right hand side of the page, this is my 100th 'blog entry! Who woulda thunk? I started this to chronicle my journey through cancer and the scope has gotten wider as time has gone on. I guess I've come to see this as kind of my open diary. I've been all over the map, subject wise, haven't I? I hope it's been at least somewhat interesting at times, but I'm sure some of it has been just one colossal bore, because that's what I think when I read back over it.
And I guess I was prolific: Last July I posted 37 entries! Sheesh, I do go on, don't I?
But I will tell you one thing: It's been therapeutic, cathartic, whatever you want to call it. For some reason it just helps to be able to express myself sometimes, I guess whether I think anyone reads it or not. And, I'm not sure how many people read it, but I do get some feedback from time to time, which is great and I appreciate it.
Originally I started this for a couple reasons. One was in case anyone else found themselves in a similar situation (cancer), I thought this may help them understand what to expect. The other was that I thought it would be easier to 'blog ONE time than call 30 people and tell them all the same story. The part about it being therapeutic was somewhat of an unexpected bonus.
I've always admired well written stories, books, screenplays, etc. and thought it might be fun to see what I could come up with myself. I think that the main thing for me to write something that's readable is that I have to be motivated. If I am motivated, I have a chance. With no motivation, it's very difficult for me to crank something out.
And, here's a crazy thing that motivated me: Julie and I will never have grandchildren. It is a goofy thing, but it occurs to me that when I'm gone, NO ONE will trace their ancestry back to me. No one will look at an old picture of me and say "I descended from HIM". Or, "that was my grandpa" or great grandfather, etc. (oh look, a biological clock kicking in a little late, at 53). I guess there's a part of me that would like to leave SOME record that I was around and document my life and my immediate family's life. But I'm not sure why.
***
Do you believe in God? Do you think there's an afterlife? If there's no afterlife, for people like Julie and I, our DNA has hit a dead end. In many ways, this is it. Strange to contemplate. And if your mind winds up there, next is what's it all about, this "life"? Just what was the point? That question was probably asked by cavemen and it's still being asked now.
I guess that could be another entire 'blog entry by itself. And that can bounce around in your head for a long time, especially when your daughter moves out and you start to see time passing at a blistering pace.
Or maybe I'm just crazy.
***
Thanks for riding with me, take care of yourselves, hope to see you soon.
Wednesday, March 30, 2011
03-30-2011 Update
03-30-2011 Update
We went to see Tessa last night. It went very well.
Tessa was very calm and went about her business mostly oblivious to us, which was in its own way both reassuring and sad at the same time.
Julie had brought her some markers and notebooks. We took Tessa up to her room and she immediately started her routine, tearing the front and back covers off and then coloring methodically on each page. Sometimes when she does this she seems obsessed with it and will continue for literally hours but last night she seemed very content to do it for a while and then move on to watching videos on her PC. She just had a calm and unhurried attitude that is pretty rare for her.
We took her downstairs so she could take her evening medications. Tessa held and drank from a glass (!) with watered-down Diet Coke and took her medicine without fuss.
Then Julie took her to the bathroom and she went upstairs and crawled into bed. We kissed her goodnight and after talking to the house mother for a while, we went home.
Rewind: The 'moment' for me was after she took her medicine and walked back into the dining room. Julie was in the bathroom telling Tessa to "come in and go potty".
Tessa paused next to the door leading out to where she knew our truck was parked. She made a tiny little sound. My interpretation of her actions at that moment was 'Come on, can I go now? Can we be done with this? Let's get my stuff and end THIS, whatever it is. I want to go HOME to MY room and MY bed and MY life. THIS experiment, whatever it is, is NOT MY LIFE. I WANT MY LIFE BACK! WHY CAN'T I HAVE MY LIFE BACK? I'm tired of the watered down drinks and no YouTube and this strange house. You remember, Dad, how it was? My LIFE? Just a few days ago? What we all had together as a family, OUR THING? I want THE OLD WAY, I WANT MY LIFE BACK!'
Thank God she only paused for a second and then moved on to the bathroom where Julie was waiting.
When Austin was born I remember there was a process I went through that really hardened my heart. Initially when we learned that Austin had Down Syndrome there was a grieving process that we experienced. It's painful emotionally to consider that your child wouldn't grow up to drive a car, have children, be able to live independently, etc., like other kids.
The first realization of these facts is excruciatingly, even physically, painful. But the second time you contemplate the challenges your child faces, it becomes a tiny bit less painful, even if you don't realize it at the time. Each successive time you consider your child's future two things happen: it hurts a little less AND you steel yourself to the prospect.
Eventually you evolve to a point where you mostly just don't let your mind go there AT ALL. It's just too painful plus there's no upside to it, for you or your child. And that change hardens you. And while you can empathize with other peoples' similar experiences down the road, they don't affect you as profoundly, because you have already been THERE and it's changed you, forever.
Other people probably think you are cold or unfeeling but the fact is that you can't do anyone any good if you let yourself go THERE. Not that you don't sometimes let yourself slip into that mindset but you know that there's nothing to be accomplished by allowing yourself to wallow in the sense of loss, the anger, resentment, and bitterness.
So with Austin I trained myself not to go THERE and when Tessa fell victim to autism the lesson was reinforced.
The hardened heart is pure survival instinct. You cannot move forward without it.
I can sit around and wring my hands about Tessa's plight but what good does that do Tessa? And what good does it do me? Julie? Austin? None, none, none and none.
When Tessa paused last night, I really NEEDED that hardened heart because I must tell you, I really, really, really wanted to GET ALL HER SHIT and GET HER THE HELL OUT OF THERE. I wanted so badly to end the 'experiment' and take my little girl HOME, to her REAL HOME, where Julie, Austin, Tessa and I have OUR THING, our lives. That's all I could think of. But Thank God the moment passed. Because while my heart broke, my mind made my body do the right thing. Which was absolutely nothing.
Anyway, not to be Stevie Downer or anything, but those are the real, raw facts. I guess I could lie and say it wasn't like that for me, or just not mention that moment, but I feel there is some real value to me in acknowledging the emotions and moving on from there. And hopefully there's something to be gained by my sharing this with you.
The upside of the callous approach is that it (hopefully) lets you do the RIGHT THING instead of the thing that you WANT to do, which may be the WRONG THING. The callous approach potentially brings reason and sanity to your decisions as opposed to following your heart, which would often ultimately bring disaster. And the callous approach allows you to be POSITIVE about what POTENTIAL there is for your child, instead of the defeatist, fatalistic view that your heart projects on the situation, all the while it's breaking in half.
I have no doubt that there is a parallel thought process for parents of 'un-challenged' children, albeit on a different level.
I have to admit that at the time Tessa was hesitating, I heard a little voice in my head that said "WTF are we doing here?".
One day at a time, one foot in front of the other...
All in all, last night was positive, even if that one moment does still nag at me, and will forever.
More visits coming up and the target for her Bauer Court visit is 4/16.
We went to see Tessa last night. It went very well.
Tessa was very calm and went about her business mostly oblivious to us, which was in its own way both reassuring and sad at the same time.
Julie had brought her some markers and notebooks. We took Tessa up to her room and she immediately started her routine, tearing the front and back covers off and then coloring methodically on each page. Sometimes when she does this she seems obsessed with it and will continue for literally hours but last night she seemed very content to do it for a while and then move on to watching videos on her PC. She just had a calm and unhurried attitude that is pretty rare for her.
We took her downstairs so she could take her evening medications. Tessa held and drank from a glass (!) with watered-down Diet Coke and took her medicine without fuss.
Then Julie took her to the bathroom and she went upstairs and crawled into bed. We kissed her goodnight and after talking to the house mother for a while, we went home.
Rewind: The 'moment' for me was after she took her medicine and walked back into the dining room. Julie was in the bathroom telling Tessa to "come in and go potty".
Tessa paused next to the door leading out to where she knew our truck was parked. She made a tiny little sound. My interpretation of her actions at that moment was 'Come on, can I go now? Can we be done with this? Let's get my stuff and end THIS, whatever it is. I want to go HOME to MY room and MY bed and MY life. THIS experiment, whatever it is, is NOT MY LIFE. I WANT MY LIFE BACK! WHY CAN'T I HAVE MY LIFE BACK? I'm tired of the watered down drinks and no YouTube and this strange house. You remember, Dad, how it was? My LIFE? Just a few days ago? What we all had together as a family, OUR THING? I want THE OLD WAY, I WANT MY LIFE BACK!'
Thank God she only paused for a second and then moved on to the bathroom where Julie was waiting.
When Austin was born I remember there was a process I went through that really hardened my heart. Initially when we learned that Austin had Down Syndrome there was a grieving process that we experienced. It's painful emotionally to consider that your child wouldn't grow up to drive a car, have children, be able to live independently, etc., like other kids.
The first realization of these facts is excruciatingly, even physically, painful. But the second time you contemplate the challenges your child faces, it becomes a tiny bit less painful, even if you don't realize it at the time. Each successive time you consider your child's future two things happen: it hurts a little less AND you steel yourself to the prospect.
Eventually you evolve to a point where you mostly just don't let your mind go there AT ALL. It's just too painful plus there's no upside to it, for you or your child. And that change hardens you. And while you can empathize with other peoples' similar experiences down the road, they don't affect you as profoundly, because you have already been THERE and it's changed you, forever.
Other people probably think you are cold or unfeeling but the fact is that you can't do anyone any good if you let yourself go THERE. Not that you don't sometimes let yourself slip into that mindset but you know that there's nothing to be accomplished by allowing yourself to wallow in the sense of loss, the anger, resentment, and bitterness.
So with Austin I trained myself not to go THERE and when Tessa fell victim to autism the lesson was reinforced.
The hardened heart is pure survival instinct. You cannot move forward without it.
I can sit around and wring my hands about Tessa's plight but what good does that do Tessa? And what good does it do me? Julie? Austin? None, none, none and none.
When Tessa paused last night, I really NEEDED that hardened heart because I must tell you, I really, really, really wanted to GET ALL HER SHIT and GET HER THE HELL OUT OF THERE. I wanted so badly to end the 'experiment' and take my little girl HOME, to her REAL HOME, where Julie, Austin, Tessa and I have OUR THING, our lives. That's all I could think of. But Thank God the moment passed. Because while my heart broke, my mind made my body do the right thing. Which was absolutely nothing.
Anyway, not to be Stevie Downer or anything, but those are the real, raw facts. I guess I could lie and say it wasn't like that for me, or just not mention that moment, but I feel there is some real value to me in acknowledging the emotions and moving on from there. And hopefully there's something to be gained by my sharing this with you.
The upside of the callous approach is that it (hopefully) lets you do the RIGHT THING instead of the thing that you WANT to do, which may be the WRONG THING. The callous approach potentially brings reason and sanity to your decisions as opposed to following your heart, which would often ultimately bring disaster. And the callous approach allows you to be POSITIVE about what POTENTIAL there is for your child, instead of the defeatist, fatalistic view that your heart projects on the situation, all the while it's breaking in half.
I have no doubt that there is a parallel thought process for parents of 'un-challenged' children, albeit on a different level.
I have to admit that at the time Tessa was hesitating, I heard a little voice in my head that said "WTF are we doing here?".
One day at a time, one foot in front of the other...
All in all, last night was positive, even if that one moment does still nag at me, and will forever.
More visits coming up and the target for her Bauer Court visit is 4/16.
Tuesday, March 29, 2011
03-29-2011 update
03-29-2011 update
We visited Tessa Saturday night.
In what may be the understatement of the year, I'll say that it was great to see her again.
We hung out in her room with her. She had managed to "hide" all her videos on her computer, so I got those restored. Compulsive clicker she is, and she keeps clicking until she messes something up. Anyway, she popped right up when I got the videos playing, like she had been without them for a while. I left a note for the staff on how to restore the vids next time she wreaks her havoc, because God knows she will, the little shyster!
We all had a great time bonding with her. She was hugging and kissing us like crazy, not in a desperate way, in more of a playful way. The good part was that she did NOT bolt for the door when we arrived, like she wanted us to take her home.
By the time we got there it was close to bed time, so we stayed a while and Julie gave her her medicine. We stayed while she fell asleep, then we left.
We all are still struggling with it. Austin lost it a couple times after we left. We had caught him a couple times just standing in Tessa's room at home, evidently contemplating his loss. It has hit him really hard.
But I think it's getting better. We got a good report yesterday. Evidently she's expanding her horizons, liquid-wise. She drank iced tea yesterday (!?). The agency is recommending that we don't bring her home until the weekend of April 16th, and we intend to comply with that request as they should know best. This week she's on spring break so she's going to the agency's workshop instead of going to school, and that seems to be going fine. Next week she'll be back in school.
The agency also thinks that we should leave her in school NEXT school year.
We're going to visit her again tonight. Julie thinks if we go just before bedtime it won't really occur to her that we're leaving.
One day at a time, one foot in front of the other, and hopefully it gets easier as time goes on.
Thanks for checking. Have a great day!
We visited Tessa Saturday night.
In what may be the understatement of the year, I'll say that it was great to see her again.
We hung out in her room with her. She had managed to "hide" all her videos on her computer, so I got those restored. Compulsive clicker she is, and she keeps clicking until she messes something up. Anyway, she popped right up when I got the videos playing, like she had been without them for a while. I left a note for the staff on how to restore the vids next time she wreaks her havoc, because God knows she will, the little shyster!
We all had a great time bonding with her. She was hugging and kissing us like crazy, not in a desperate way, in more of a playful way. The good part was that she did NOT bolt for the door when we arrived, like she wanted us to take her home.
By the time we got there it was close to bed time, so we stayed a while and Julie gave her her medicine. We stayed while she fell asleep, then we left.
We all are still struggling with it. Austin lost it a couple times after we left. We had caught him a couple times just standing in Tessa's room at home, evidently contemplating his loss. It has hit him really hard.
But I think it's getting better. We got a good report yesterday. Evidently she's expanding her horizons, liquid-wise. She drank iced tea yesterday (!?). The agency is recommending that we don't bring her home until the weekend of April 16th, and we intend to comply with that request as they should know best. This week she's on spring break so she's going to the agency's workshop instead of going to school, and that seems to be going fine. Next week she'll be back in school.
The agency also thinks that we should leave her in school NEXT school year.
We're going to visit her again tonight. Julie thinks if we go just before bedtime it won't really occur to her that we're leaving.
One day at a time, one foot in front of the other, and hopefully it gets easier as time goes on.
Thanks for checking. Have a great day!
Saturday, March 26, 2011
03-26-2011
03-26-2011
Tessa has been at her new home since Monday evening. It seems to be going pretty well.
On Wednesday our niece Jori drove her kids past Tessa's new house as the kids hadn't seen it. On their way back they saw Tessa's bus coming back from school so they turned around to watch her. Tessa got off the bus and bounced into the house, seemingly happy to be "home".
Jori and her daughter Hallie burst into tears at the sight of Tessa 'all grown up'.
Thursday we had her annual review at her school. We did not see her, by design. It's not clear at this point if Tessa will be there after this school year. Tessa's teacher got teary eyed after her report and said that Tessa will be missed. Tessa's art teacher was emotional when presenting some of Tessa's paintings to us. She gave Julie some old pictures of Tessa from years past. That made Julie cry.
Everyone had nice things to say about our daughter. The school district special aide coordinator, who has a special needs child, got emotional discussing our decision to place Tessa and talked about her dilemma in considering placing her own daughter.
Everyone was supportive and gave very good reviews about Tessa. It has been extremely gratifying to know that people genuinely care about her and have prepared her well for her adult life.
Reports from the house have been very good. Tessa seems to be adjusting very well. It has occurred to me that maybe we needed her more than she needed us. The only real issue that there seems to be at this point is that Tessa's fluid intake is down due to her refusal to drink anything other than Diet Coke. I have no doubt that they will figure that out.
While it's been a heart breaking experience in many ways, I am encouraged to think that Tessa will do fine without us. She's got a lot of life left and her parents won't live forever. I am happy that Tessa can adjust to a new environment and carve out her own niche. That is what this whole exercise was about, after all.
Julie has been riding an emotional roller coaster. She's working on leveling out.
Today we plan to finally visit Tessa for a little while.
I ache to hug her.
Tessa has been at her new home since Monday evening. It seems to be going pretty well.
On Wednesday our niece Jori drove her kids past Tessa's new house as the kids hadn't seen it. On their way back they saw Tessa's bus coming back from school so they turned around to watch her. Tessa got off the bus and bounced into the house, seemingly happy to be "home".
Jori and her daughter Hallie burst into tears at the sight of Tessa 'all grown up'.
Thursday we had her annual review at her school. We did not see her, by design. It's not clear at this point if Tessa will be there after this school year. Tessa's teacher got teary eyed after her report and said that Tessa will be missed. Tessa's art teacher was emotional when presenting some of Tessa's paintings to us. She gave Julie some old pictures of Tessa from years past. That made Julie cry.
Everyone had nice things to say about our daughter. The school district special aide coordinator, who has a special needs child, got emotional discussing our decision to place Tessa and talked about her dilemma in considering placing her own daughter.
Everyone was supportive and gave very good reviews about Tessa. It has been extremely gratifying to know that people genuinely care about her and have prepared her well for her adult life.
Reports from the house have been very good. Tessa seems to be adjusting very well. It has occurred to me that maybe we needed her more than she needed us. The only real issue that there seems to be at this point is that Tessa's fluid intake is down due to her refusal to drink anything other than Diet Coke. I have no doubt that they will figure that out.
While it's been a heart breaking experience in many ways, I am encouraged to think that Tessa will do fine without us. She's got a lot of life left and her parents won't live forever. I am happy that Tessa can adjust to a new environment and carve out her own niche. That is what this whole exercise was about, after all.
Julie has been riding an emotional roller coaster. She's working on leveling out.
Today we plan to finally visit Tessa for a little while.
I ache to hug her.
Monday, March 21, 2011
03-21-2011
Sunday, March 20, 2011
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.
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.
Tuesday, March 15, 2011
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!
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!
Thursday, March 3, 2011
Thursday, February 24, 2011
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.
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.
Saturday, February 19, 2011
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!
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.
***
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 hereI'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.
***
Wednesday, February 2, 2011
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?
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?
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