It is with great sorrow that I close out the update list. Lori lost her battle with cancer at 1:35AM on 8 November 2008. She went with no suffering and very quickly, which was as she wanted it to happen. Some of you I have talked to personally and I apologize for the repeat but I wanted to make sure I got everyone. She met death the same way she tackled life, head on and on her own terms. I know she enjoyed hearing from each of you about the updates.
Sincerely
Gene Barringer
Friday, November 14, 2008
Wednesday, October 29, 2008
Update
Well, I have good news and bad news. I amnot eligible for Cyberknife because i have had a tumor shower - either 5 or so new tumors in my brain and that is. too many too target--So we go back to overall radiation which should "reset" the clock But if you have something on your mind, heart, or conscience -the next 30 to 60 days would be good.We start radiation tomorrow.
The good news from my perspective is it will be quick and painless and that answered my prayers. And although my nurse didn't find it funny - It IS all n my head-
Here is my current perspective on politics-- You cn't even be offended since I have brain tumors! How handy it that?
Lori Barringer
Friday, September 19, 2008
OK - the radiation docs decided to wait 3-4 weeks, redo the MRI, and then decide on the Cyberknife. So since Aug 15th I have been chemo free and about 2 1/2 weeks ago started feeling really great - strong and wanting to do things and having fun.
On Wednesday I had another CT scan and the tumors have mostly stayed the same size. A millimeter larger in some cases but that apparently could depend on the CRT slice.
So we met with the oncologist and she thinks the fainting was chemo induced and I haven't had to spend any days in bed since I stopped the chemo. So we decided that the systemic chemo wasn't improving things much, ruined my blood white count, and had trashed my quality of life, to put it off for another month. We will have another scan and talk it over in a month. I think the treatment is marginally worse than the disease so far.
So I am waiting on the next MRI and find out if they will cyberknife.
Enjoy today and hope for tomorrow.
My friend Trish sent me this - I wanted to pass it on.
I'm sending out a prayer request to everyone I know. Paul's sister Karen has stage 4 breast cancer. She called today with more bad news. She just finished another series of chemo and has MORE tumors in her brain and liver than before the chemo! She emailed me today and asked me to get a huge prayer chain going for her. She's been a scientologist most of her adult life but has started to realize she's never lost her belief in God and the power of prayer. So if you could all help me out by praying for her, adding her to prayer chains at your churches etc. I would greatly appreciate it! I love you all and keep all of you in my prayers everyday. Thanks for the help and God Bless You All! Love from Lori
On Wednesday I had another CT scan and the tumors have mostly stayed the same size. A millimeter larger in some cases but that apparently could depend on the CRT slice.
So we met with the oncologist and she thinks the fainting was chemo induced and I haven't had to spend any days in bed since I stopped the chemo. So we decided that the systemic chemo wasn't improving things much, ruined my blood white count, and had trashed my quality of life, to put it off for another month. We will have another scan and talk it over in a month. I think the treatment is marginally worse than the disease so far.
So I am waiting on the next MRI and find out if they will cyberknife.
Enjoy today and hope for tomorrow.
My friend Trish sent me this - I wanted to pass it on.
I'm sending out a prayer request to everyone I know. Paul's sister Karen has stage 4 breast cancer. She called today with more bad news. She just finished another series of chemo and has MORE tumors in her brain and liver than before the chemo! She emailed me today and asked me to get a huge prayer chain going for her. She's been a scientologist most of her adult life but has started to realize she's never lost her belief in God and the power of prayer. So if you could all help me out by praying for her, adding her to prayer chains at your churches etc. I would greatly appreciate it! I love you all and keep all of you in my prayers everyday. Thanks for the help and God Bless You All! Love from Lori
Tuesday, August 26, 2008
bad news then better news
I had an MRI of my head and when they called they told us that I had a new cluster of tumors in my brain. Today I met with the radiation oncologist at Menorah Hospital to discuss whether I was a candidate for a procedure called Cyber Knife.
Much to my delight the cluster was part of the hourglass tumor that I had in February. There is one tiny new one.
I am a good candidate for this radiological procedure. It involves using many tiny rays very accurately to target the tumor. Everywhere the rays overlap you get a heavy dosage of radiation and the areas with a single ray gets a minimal dose. They have a good success rate. I'll keep you posted.
The orange cat has moved on.
Much to my delight the cluster was part of the hourglass tumor that I had in February. There is one tiny new one.
I am a good candidate for this radiological procedure. It involves using many tiny rays very accurately to target the tumor. Everywhere the rays overlap you get a heavy dosage of radiation and the areas with a single ray gets a minimal dose. They have a good success rate. I'll keep you posted.
The orange cat has moved on.
Thursday, July 31, 2008
More good news
Last week I had a crt cat scan of my chest - 3 of the 5 tumors have shrunk and the other two have not grown. So we continue on with the next chemo rounds and hope this trend continues! the 4th and 5th day after chemo I am usually really tired but that is fairly easy to deal with. I am trying to keep up with my physical therapy again. all my blood tests look good, too.
Someone dropped off an orange cat - it is pretty close to feral but we are feeding it and named it Compost since that is where it sleeps ---and we had a 6 foot black snake in the back yard a few days back. His name is Murphy, gotta love the country life.
Lori Barringer
http://lorib2mostories.blogspot.com/
Someone dropped off an orange cat - it is pretty close to feral but we are feeding it and named it Compost since that is where it sleeps ---and we had a 6 foot black snake in the back yard a few days back. His name is Murphy, gotta love the country life.
Lori Barringer
http://lorib2mostories.blogspot.com/
Thursday, July 3, 2008
Good News
Hello!!
I had an MRI of the brain on Monday and the brain tumors have shrunk - One of them 2mm - which is a lot in the tumor world! Dr. Rigden said "Radiation is the gift that keeps on giving." I was so happy to hear that!
Today we went in and made all the cremation arrangements - Prepaid saves you a ton of money and your family doesn't have to make all the decisions while they are grieving. The lady said she had one Stage 4 cancer patient that prepaid 7 years ago. So you never know....But it feels good to have it dealt with for the families sake. The actual burial site will be on the Illinois side of Missouri in a veterans cemetery there.
I had chemo on Wednesday and my white count is way down so Gene is locking me in the tower so that I don't catch a cold, flu, or pneumonia - He is not into irony. So the flu is not going to get me by golly. Life is good and I have library books.
I had an MRI of the brain on Monday and the brain tumors have shrunk - One of them 2mm - which is a lot in the tumor world! Dr. Rigden said "Radiation is the gift that keeps on giving." I was so happy to hear that!
Today we went in and made all the cremation arrangements - Prepaid saves you a ton of money and your family doesn't have to make all the decisions while they are grieving. The lady said she had one Stage 4 cancer patient that prepaid 7 years ago. So you never know....But it feels good to have it dealt with for the families sake. The actual burial site will be on the Illinois side of Missouri in a veterans cemetery there.
I had chemo on Wednesday and my white count is way down so Gene is locking me in the tower so that I don't catch a cold, flu, or pneumonia - He is not into irony. So the flu is not going to get me by golly. Life is good and I have library books.
June 24th - forgot to post
I owe long overdue thanks to all the people who worked so hard at the fundraiser when my health kept me from participating. Cindy Weers-Elliot coordinated it all and Jane Snodgrass and Kathy Whitley worked on the project, too. My Mizzou crew - Ryan, Josh, and Matty were a big help. Thanks go to the church ladies for supplying all the food. Thanks to you all for a successful event.
Rita Barringer, Gene's ex-wife, died last week - She was the mother of our two oldest boys. She was only 47 and it was a terrible shock to us all. She loved her boys and knew they loved her. She will be missed.
My blood results, although I feel fine, have been way off so i have not been doing chemo. I had another series of tests today. All my results were in limits - so on Wednesday I start chemo again.
Rita Barringer, Gene's ex-wife, died last week - She was the mother of our two oldest boys. She was only 47 and it was a terrible shock to us all. She loved her boys and knew they loved her. She will be missed.
My blood results, although I feel fine, have been way off so i have not been doing chemo. I had another series of tests today. All my results were in limits - so on Wednesday I start chemo again.
Friday, May 30, 2008
Queen of Drama - officially
On Tuesday I had chest pains when I took deep breaths so we went to the ER - after hours of hoorah, I have a tiny pulmonary embolism in my lung - I was sent to ICU and given blood thinners, then the next day moved to the far quieter 3rd floor surgical and on the 29th (Gene's birthday) got sent home with blood thinners to inject and a plan to meet with Dr. Rigden next Wednesday to pick the next chemo - Xeloda does not play well with blood thinners.
So I am once again doing fine - but there must be something wrong at my hospital - at least twice an episode during Grey's Anatomy they have a code blue - I've been in the hospital at least 10 episodes worth and they haven't had even one.
Anyway I am still hanging in there and feeling pretty well.
So I am once again doing fine - but there must be something wrong at my hospital - at least twice an episode during Grey's Anatomy they have a code blue - I've been in the hospital at least 10 episodes worth and they haven't had even one.
Anyway I am still hanging in there and feeling pretty well.
Beautiful Explanation of Death for a Christian - thanks Norma!
~DEATH~ WHAT A WONDERFUL WAY TO EXPLAIN IT ..
A sick man turned to his doctor as he was preparing to
leave the examination room and said,
"Doctor, I am afraid to die.
Tell me what lies on the other side."
Very quietly, the doctor said, "I don't know."
"You don't know? You, a Christian man,
do not know what is on the other side?"
The doctor was holding the handle of the door;
on the other side came a sound of scratching and whining,
and as he opened the door, a dog sprang into the room
and leaped on him with an eager show of gladness.
Turning to the patient, the doctor said,
"Did you notice my dog?
He's never been in this room before.
He didn't know what was inside.
He knew nothing except that his master was here,
and when the door opened, he sprang in without fear.
I know little of what is on the other side of death,
but I do know one thing...
I know my Master is there and that is enough."
~DEATH~ WHAT A WONDERFUL WAY TO EXPLAIN IT ..
A sick man turned to his doctor as he was preparing to
leave the examination room and said,
"Doctor, I am afraid to die.
Tell me what lies on the other side."
Very quietly, the doctor said, "I don't know."
"You don't know? You, a Christian man,
do not know what is on the other side?"
The doctor was holding the handle of the door;
on the other side came a sound of scratching and whining,
and as he opened the door, a dog sprang into the room
and leaped on him with an eager show of gladness.
Turning to the patient, the doctor said,
"Did you notice my dog?
He's never been in this room before.
He didn't know what was inside.
He knew nothing except that his master was here,
and when the door opened, he sprang in without fear.
I know little of what is on the other side of death,
but I do know one thing...
I know my Master is there and that is enough."
Monday, May 26, 2008
Review results
Well. folks - the taxol did not do the trick - the tumors have not shrunk - so we are doing an oral chemo now - I take an anti-nausea drug 1st, then 5 of the chemo - Xeloda - pills twice a day. So far no bad effects.
To prevent one of the side effects I have to put something called Bag Balm on my feet and hands to prevent sores. it is the texture of petroleum Jelly. I put on crew socks to keep from greasing the sheets and the floor. But my feet are nice and soft.
Gene's parents came to visit and it was great. We took Ryan and Leah to Ameristar Casino for all the crab legs you can eat on their buffet.
He's 19 now - how did that happen? I blinked.
To prevent one of the side effects I have to put something called Bag Balm on my feet and hands to prevent sores. it is the texture of petroleum Jelly. I put on crew socks to keep from greasing the sheets and the floor. But my feet are nice and soft.
Gene's parents came to visit and it was great. We took Ryan and Leah to Ameristar Casino for all the crab legs you can eat on their buffet.
He's 19 now - how did that happen? I blinked.
Fell
I haven't written in a while - Last week I was in the hospital again -
Gene went to the store and I got up and went to the bathroom - and woke up with my head in the shower stall - no warning, dizziness, head whirls or blurs. Just down. I knocked the glass doors off the tracks, broke the track, and was dripping blood all over when I came to. When I finally got myself upright (a story in itself) I found I had gashed my face from my nose to my lip. Didn't hurt so I had thought I had a nose bleed.
Leah showed up in about 5 minutes to visit me and since I had a bloody washcloth on my face - the first thing I said was "It's not as bad as it looks." She was so cool - got me dressed (I was still in my pj's) and then cleaned up the bathroom so Gene wouldn't have to see all the blood - Head wounds bleed a lot. She is great!
I am glad this isn't a movie because in the movies the glass doors would have shattered and cut off my head - and that would have really ruined a lot of people's day.
So Gene took me to the ER. I received 6 stitches -- the numbing agent, Lidocaine comes in square needles and burns - the only part of the procedure that hurt.
Then they surprised us by admitting me and giving me tons of tests. Result - the Taxol/steroid combo has slowed my nerve response. When you stand up, the nerves in your legs tell your muscles to contract taking blood to your brain - I guess I walked all the way to the bathroom without any blood in the brain.
First my legs give way, then quit delivering blood - both listed under the 2% possible side effects. I am definitely going to read that part of the package of information they give me more carefully!
Anyway I am back home and standing slowly - then flexing my calves. So far so good! Today I go in for my review of all the scans and we will see if I continue the chemo. I'll let you know.
Gene went to the store and I got up and went to the bathroom - and woke up with my head in the shower stall - no warning, dizziness, head whirls or blurs. Just down. I knocked the glass doors off the tracks, broke the track, and was dripping blood all over when I came to. When I finally got myself upright (a story in itself) I found I had gashed my face from my nose to my lip. Didn't hurt so I had thought I had a nose bleed.
Leah showed up in about 5 minutes to visit me and since I had a bloody washcloth on my face - the first thing I said was "It's not as bad as it looks." She was so cool - got me dressed (I was still in my pj's) and then cleaned up the bathroom so Gene wouldn't have to see all the blood - Head wounds bleed a lot. She is great!
I am glad this isn't a movie because in the movies the glass doors would have shattered and cut off my head - and that would have really ruined a lot of people's day.
So Gene took me to the ER. I received 6 stitches -- the numbing agent, Lidocaine comes in square needles and burns - the only part of the procedure that hurt.
Then they surprised us by admitting me and giving me tons of tests. Result - the Taxol/steroid combo has slowed my nerve response. When you stand up, the nerves in your legs tell your muscles to contract taking blood to your brain - I guess I walked all the way to the bathroom without any blood in the brain.
First my legs give way, then quit delivering blood - both listed under the 2% possible side effects. I am definitely going to read that part of the package of information they give me more carefully!
Anyway I am back home and standing slowly - then flexing my calves. So far so good! Today I go in for my review of all the scans and we will see if I continue the chemo. I'll let you know.
Thursday, May 1, 2008
Chemo 2
Well, the first chemo wasn't to bad - Not as bad as the first series - I had extreme fatigue (2 naps a day and 14 hours sleep at night but it got better) and then halfway through started running fevers - I had a white blood cell drop - so I got to take a general spectrum antibiotic and now my white blood count is fine - 9 something.
But the low count meant that I couldn't go to the fundraiser - had to stay out of crowds. Cindy Weers, Jane Snodgrass, Kathy Whitley, Ryan and his friends - Matty and Josh from MU all took over and ran things. It was great!
So I had my second Taxol treatment yesterday. I have Physical training today and a Radiology Oncology follow up today.
Our daffodils and tulips are glorious this year - It is a great excuse to walk outside.
Lori Barringer
But the low count meant that I couldn't go to the fundraiser - had to stay out of crowds. Cindy Weers, Jane Snodgrass, Kathy Whitley, Ryan and his friends - Matty and Josh from MU all took over and ran things. It was great!
So I had my second Taxol treatment yesterday. I have Physical training today and a Radiology Oncology follow up today.
Our daffodils and tulips are glorious this year - It is a great excuse to walk outside.
Lori Barringer
Tuesday, April 8, 2008
Chemo coming up
So I will start my first chemo session tomorrow - Taxol. I will probably be laid up for a bit.
I want to tell you about a fundraiser coming up.
A fundraiser for the American Cancer Society and Cameron Relay for Life.
On April 26th, we will be having a Knitter's Fundraiser for our neighbor, Lori Barringer, who has been diagnosed with Stage 4 breast cancer. It will be from 10 am until 3pm.
It will take place at the First Christian Church community center in Lathrop. The address is 400 Center Street in Lathrop MO 64465. Take I 35 - exit 40; go west 3 miles - Turn left at the Shell station and it is the tan brick church on the right a few blocks down.
There will be BIG yarn, knitting needles, and pattern magazines giveaways -All Free. There will silent auction of wonderful pattern books, sweater kits, and sock yarns. We will raffle off a handmade yarn swift and ball winder combination and there will be a yarn organizer bag with sock yarns and sock pattern books for the door prize. You must be present to win.
Of course there will be snacks and coffee.
There will be novelty yarns to make chemo caps for donation. A Pattern is available at http://www.lionbrand.com/patterns/kff-chemoCap.html.
Bring your projects in work, gather around a table, Knit, Chat, celebrate being a knitter, and give to a worthy cause - All funds raised will go to the ACS to advance the fight of Cancer. Donations will be gladly accepted.
I want to tell you about a fundraiser coming up.
A fundraiser for the American Cancer Society and Cameron Relay for Life.
On April 26th, we will be having a Knitter's Fundraiser for our neighbor, Lori Barringer, who has been diagnosed with Stage 4 breast cancer. It will be from 10 am until 3pm.
It will take place at the First Christian Church community center in Lathrop. The address is 400 Center Street in Lathrop MO 64465. Take I 35 - exit 40; go west 3 miles - Turn left at the Shell station and it is the tan brick church on the right a few blocks down.
There will be BIG yarn, knitting needles, and pattern magazines giveaways -All Free. There will silent auction of wonderful pattern books, sweater kits, and sock yarns. We will raffle off a handmade yarn swift and ball winder combination and there will be a yarn organizer bag with sock yarns and sock pattern books for the door prize. You must be present to win.
Of course there will be snacks and coffee.
There will be novelty yarns to make chemo caps for donation. A Pattern is available at http://www.lionbrand.com/patterns/kff-chemoCap.html.
Bring your projects in work, gather around a table, Knit, Chat, celebrate being a knitter, and give to a worthy cause - All funds raised will go to the ACS to advance the fight of Cancer. Donations will be gladly accepted.
Wednesday, April 2, 2008
Update 10
We visited the radiation Oncologist and the brain tumors have shrunk in size and volume and should continue to do so - they will check in 3 months or so again. He also said I had the most profound case of Cushing syndrome he had seen - it is called moon face syndrome - which explains why I look like a bowling ball or smiley face - while I was mulling that over, Gene asked if it would go away and the answer was yes - it is another side effect of the steroids. So I guess I will once again have cheekbones and a chin. I am glad to know that. He always asks the good questions.
My sisters came to visit this weekend and it was great. I had such a wonderful time with them.
I am getting stronger daily and am very determined to get full function back - I had a 4 inch gap in strength between sitting in an ordinary chair and standing but that is getting better daily and I still can't do more than a 2 or 3 inch step up but I am working on it. 2 weeks ago I couldn't sit up for more than 2 hours and now I can do 6 or 7 hours at a stretch so I am making great strides in strength. So the latest steroid taper is going well.
Who knew I'd be in the small percentage that reacts so weirdly to steroids- part of that over-achiever thing I guess?
Life continues to be good.
My sisters came to visit this weekend and it was great. I had such a wonderful time with them.
I am getting stronger daily and am very determined to get full function back - I had a 4 inch gap in strength between sitting in an ordinary chair and standing but that is getting better daily and I still can't do more than a 2 or 3 inch step up but I am working on it. 2 weeks ago I couldn't sit up for more than 2 hours and now I can do 6 or 7 hours at a stretch so I am making great strides in strength. So the latest steroid taper is going well.
Who knew I'd be in the small percentage that reacts so weirdly to steroids- part of that over-achiever thing I guess?
Life continues to be good.
Thursday, March 27, 2008
High Drama
Sunday morning we had one of those perfect married moments. We went to our local cafe, Shirley's, ordered breakfast - shared the Sunday paper - travel had an article on Ireland and we remembered our great trip, marveled at the stupid stuff people get up to, shared bits and pieces of news and opinions - just one of those moments when you are with your perfect person and in complete accord and enjoying each other. It was wonderful.
So we went home and I got out of the car and got to the step and my legs quit working - gone. Fortunately Gene was hovering because I had been weak all week so I landed gently on the garage step - and could not move. Well, high drama ensues - including a group hug with 4 EMT's to get me on a gurney --- and I am in the ER and the doctor picks up my leg and tells me to hold it and it drops like a rock. Well, this did not seem like a good thing. The legs started working sort of - shortly I could bend my knees but I have been admitted and tested and generally worked over.
And it wasn't nearly as bad as I feared - it is steroidal myopathy or severe muscle weakness that this particular steroid causes in the thigh muscles.
So I can once again stand and walk 50 feet and that met the requirement to come home and I am doing physical therapy to get stronger. I still tire so easily but I am very motivated and will focus on the therapy for the next week.
Please don't think I have been ignoring your emails - I appreciate them all.
So we went home and I got out of the car and got to the step and my legs quit working - gone. Fortunately Gene was hovering because I had been weak all week so I landed gently on the garage step - and could not move. Well, high drama ensues - including a group hug with 4 EMT's to get me on a gurney --- and I am in the ER and the doctor picks up my leg and tells me to hold it and it drops like a rock. Well, this did not seem like a good thing. The legs started working sort of - shortly I could bend my knees but I have been admitted and tested and generally worked over.
And it wasn't nearly as bad as I feared - it is steroidal myopathy or severe muscle weakness that this particular steroid causes in the thigh muscles.
So I can once again stand and walk 50 feet and that met the requirement to come home and I am doing physical therapy to get stronger. I still tire so easily but I am very motivated and will focus on the therapy for the next week.
Please don't think I have been ignoring your emails - I appreciate them all.
Friday, March 14, 2008
Wet Mess
This has been an extremely difficult week. On Monday I was hit with such extreme exhaustion that I could not read, if I got dressed I had to rest in bed for an hour, I could barely get to the bathroom. I could not cope with anything and just lay in bed pretty much weeping. And that horrified and terrified me - I define my self as the coper, the challenge taker, a person that can.....and the more I panicked, the more I got anxious, the more exhausted I got and it was one huge downward spiral -- I turned into Big Wet Mess Lori - and the "real" me seemed to have been erased.
Thank God for Gene - He said all the right things - this is a temporary setback, it will get better, and we need to call the doctor.
So, we did - and I am going to start taking antidepressants - and although they tell me that it will not reach therapeutic levels in my blood for a while - It is going to get better - and knowing that made the wet panic pass and stopped the spiral. PHEW! I just have to wait -- and it will get better and I won't spend my days or decades as Wet Mess Lori. Thank God we live in a time where there are chemical supports for depression and anxiety and I am so glad this is available to me.
Now, as to the cause - I told you all that we were tapering off the steroids for the tumors - Well, what is supposed to happen is you very gradually taper off (dangerous stuff, steroids) and your body is supposer to start making up the the stuff naturally -- and my body isn't or can't or what ever - so I had a huge crash. So we are back at the original dose and will do a super, duper, extremely slow motion taper so this doesn't happen again.
And today is better.
So I had the oncology meeting - I am not going to be participating in any clinical trials. Any trials out there that involve my type of cancer will not accept what we are describing as resolved brain issues. That means brain tumors - even gone - complicate the studies too much. So that is done.
We went through a huge list of chemo options. Here is my thinking on that - If it combined the phrase - No documented longevity (That means no extra time) with anything like, perforating, ulcerating, or coughing up blood - NOPE - I want to live days or decades as real Lori not Wet Mess.
So we are going with Taxol starting on April 9th and again on the 30th and evaluation.
So on the day of the brain MRI, I will also do a complete Cat Scan of the body to set a base line for the tumors in my body.
And it will be sets of 2 chemos - with a 3 week break in between and then an evaluation.
So we are off to the next adventure. Right now, in slow motion or on pause.
Thank God for Gene - He said all the right things - this is a temporary setback, it will get better, and we need to call the doctor.
So, we did - and I am going to start taking antidepressants - and although they tell me that it will not reach therapeutic levels in my blood for a while - It is going to get better - and knowing that made the wet panic pass and stopped the spiral. PHEW! I just have to wait -- and it will get better and I won't spend my days or decades as Wet Mess Lori. Thank God we live in a time where there are chemical supports for depression and anxiety and I am so glad this is available to me.
Now, as to the cause - I told you all that we were tapering off the steroids for the tumors - Well, what is supposed to happen is you very gradually taper off (dangerous stuff, steroids) and your body is supposer to start making up the the stuff naturally -- and my body isn't or can't or what ever - so I had a huge crash. So we are back at the original dose and will do a super, duper, extremely slow motion taper so this doesn't happen again.
And today is better.
So I had the oncology meeting - I am not going to be participating in any clinical trials. Any trials out there that involve my type of cancer will not accept what we are describing as resolved brain issues. That means brain tumors - even gone - complicate the studies too much. So that is done.
We went through a huge list of chemo options. Here is my thinking on that - If it combined the phrase - No documented longevity (That means no extra time) with anything like, perforating, ulcerating, or coughing up blood - NOPE - I want to live days or decades as real Lori not Wet Mess.
So we are going with Taxol starting on April 9th and again on the 30th and evaluation.
So on the day of the brain MRI, I will also do a complete Cat Scan of the body to set a base line for the tumors in my body.
And it will be sets of 2 chemos - with a 3 week break in between and then an evaluation.
So we are off to the next adventure. Right now, in slow motion or on pause.
Thursday, March 6, 2008
Monday, March 3, 2008
Update 9
Oh Boy! - I dropped the laptop - and some of the keys stick now - Notably the 'a' key, the period, a couple of others that I didn't realize - so my last update looked spastic. Mechanical difficulties and not stopping to proofread -- OOOps.
So it was the last treatment not the lst. Ok - I will remember to proof my work........I know better.
Well, I can't drive anymore - figured that out right away; it's a loss of independence that's hard to be upbeat about.
But people are good and Gene is working at home - so he can get me to all the appointments. He is "only" going to be working 60 hours a week (He loves his job and it is a big delight to him--it is cool to discuss the impact of nulls on software - we have fun).
The IV port insertion will happen on Wednesday morning early. Lab work tomorrow but that doesn't take long.
I had the best weekend. I went to my daughter's school friend's wedding and the bride and the DD were both breathtaking. I had listened to Holly's wedding plans - Her colors were silver, black, and white - and it went off perfectly - I had seen pictures of her dress beforehand but it was so much more lovely in reality....It was so great.
And Gene and I had a major date on Sunday - We went to UMKC Spenser Theatre and saw "A Marvelous Party" - a musical collection of Noel Coward songs - the 3 people that performed were immensely talented and it was so funny! The theatre was a gem and the acoustics are wonderful.
So it was the last treatment not the lst. Ok - I will remember to proof my work........I know better.
Well, I can't drive anymore - figured that out right away; it's a loss of independence that's hard to be upbeat about.
But people are good and Gene is working at home - so he can get me to all the appointments. He is "only" going to be working 60 hours a week (He loves his job and it is a big delight to him--it is cool to discuss the impact of nulls on software - we have fun).
The IV port insertion will happen on Wednesday morning early. Lab work tomorrow but that doesn't take long.
I had the best weekend. I went to my daughter's school friend's wedding and the bride and the DD were both breathtaking. I had listened to Holly's wedding plans - Her colors were silver, black, and white - and it went off perfectly - I had seen pictures of her dress beforehand but it was so much more lovely in reality....It was so great.
And Gene and I had a major date on Sunday - We went to UMKC Spenser Theatre and saw "A Marvelous Party" - a musical collection of Noel Coward songs - the 3 people that performed were immensely talented and it was so funny! The theatre was a gem and the acoustics are wonderful.
Thursday, February 28, 2008
Udate 8
Today, (26) Tah-dah! - was the last Radiation treatment. So far, so good. I am going to get the brain rescanned on the 26th of March and meet again with the radiation guy on the 1st of April, which seems appropriate. I will let you know right away after that how this went.
So I was looking at some options before the Oncology meeting tomorrow. There are hundreds of clinical trials out there working toward discovering cures and treatments. I was astounded to find out that less then 5% of cancer patients participate in them. If it will advance the cause one millimeter - why would you not involve yourself? So if I am eligible, I will be leaping right on that one - I mean, I have cancer....Can I move this forward in any way?
Now, I am not looking forward to chemo or tests, or procedures - I mean, it would be far cooler to be in a Reiki massage test or hot rock massage at the Elms spa - but I am willing to have or do what ever this takes to move this forward to a cure. OK - even the icky stuff. (though not as eagerly as the massage stuff)
So pray there is something I am eligible for and that is going to help. That would please me. But remember, even the failure of these trials move science forward and that is a big thing in itself.
(27) So, I did discuss clinical trials and Dr. Rigden started a search for opportunities. The brain tumors make me ineligible for some, the fact that my tumors are not at all hormone sensitive knocked out a few, some things I am not a fit for - but there seem to be 2 possible and her researcher is looking for more since I reminded her I was VA eligible for military studies.
I had my IV port removed in December over the break. More Irony - I think the Greeks said a person makes plans and the gods giggle. So I have awful veins - even when I was young I could make an IV team cry when they had to stick me over and over - On Monday I meet with a surgeon to set up getting one back. It will make the long term medical stuff much easier and I can tell you it is an fairly easy in-and-out day surgery.
I get a handicapped parking sticker. When I come back in the fall, I won't have to park in Kansas with my carpool. See - silver lining.
Note to Chief Kyle - No-one has a turn of phrase like a retired Chief! I laughed for hours! My heart sister, Kathy keeps me living vicariously through her stories of school and all the things the non-traditional students are getting done and I really enjoy that. Spring breaks are coming!
My face is swollen up like a ball - not a good look! Sort of bowling ball. It is because of the steroids they gave me to reduce the swelling around the brain tumors and that worked - no vision problems or headaches. The steroids have to be tapered off very gradually - powerful stuff but Dr. Rigden says the swelling will recede as we do.
This upcoming round of chemo will not start for a bit - It looks like it will be done in multiple series of 2 session chemo increments with an evaluation of progress in between. But first I get some healing time and a break for preparation - so life is good.
I am going to be working with a dear friend on a American Cancer Society fundraiser --- A knitting thing. It will be in Lathrop but we are just now starting to work on the details.
Lori Barringer
http://lorib2mostories.blogspot.com/
So I was looking at some options before the Oncology meeting tomorrow. There are hundreds of clinical trials out there working toward discovering cures and treatments. I was astounded to find out that less then 5% of cancer patients participate in them. If it will advance the cause one millimeter - why would you not involve yourself? So if I am eligible, I will be leaping right on that one - I mean, I have cancer....Can I move this forward in any way?
Now, I am not looking forward to chemo or tests, or procedures - I mean, it would be far cooler to be in a Reiki massage test or hot rock massage at the Elms spa - but I am willing to have or do what ever this takes to move this forward to a cure. OK - even the icky stuff. (though not as eagerly as the massage stuff)
So pray there is something I am eligible for and that is going to help. That would please me. But remember, even the failure of these trials move science forward and that is a big thing in itself.
(27) So, I did discuss clinical trials and Dr. Rigden started a search for opportunities. The brain tumors make me ineligible for some, the fact that my tumors are not at all hormone sensitive knocked out a few, some things I am not a fit for - but there seem to be 2 possible and her researcher is looking for more since I reminded her I was VA eligible for military studies.
I had my IV port removed in December over the break. More Irony - I think the Greeks said a person makes plans and the gods giggle. So I have awful veins - even when I was young I could make an IV team cry when they had to stick me over and over - On Monday I meet with a surgeon to set up getting one back. It will make the long term medical stuff much easier and I can tell you it is an fairly easy in-and-out day surgery.
I get a handicapped parking sticker. When I come back in the fall, I won't have to park in Kansas with my carpool. See - silver lining.
Note to Chief Kyle - No-one has a turn of phrase like a retired Chief! I laughed for hours! My heart sister, Kathy keeps me living vicariously through her stories of school and all the things the non-traditional students are getting done and I really enjoy that. Spring breaks are coming!
My face is swollen up like a ball - not a good look! Sort of bowling ball. It is because of the steroids they gave me to reduce the swelling around the brain tumors and that worked - no vision problems or headaches. The steroids have to be tapered off very gradually - powerful stuff but Dr. Rigden says the swelling will recede as we do.
This upcoming round of chemo will not start for a bit - It looks like it will be done in multiple series of 2 session chemo increments with an evaluation of progress in between. But first I get some healing time and a break for preparation - so life is good.
I am going to be working with a dear friend on a American Cancer Society fundraiser --- A knitting thing. It will be in Lathrop but we are just now starting to work on the details.
Lori Barringer
http://lorib2mostories.blogspot.com/
Update 8
Today, (26th) Tah-dah! - was the lst Radiation treatment. So far, so good. I am going to get the brain rescanned on the 26th of March and meet again with the radiation guy on the 1st of April, which seems appropriate. I will let you know right away after that how this went.
So I was looking at some options before the Oncology meeting tomorrow. There are hundreds of clinical trials out there working toward discovering cures and treatments. I was astounded to find out that less then 5% of cancer patients participate in them. If it will advance the cause one millimeter - why would you not involve yourself? So if I am eligible, I will be leaping right on that one - I mean, I have cancer....Can I move this forward in any way?
Now, I am not looking forward to chemo or tests, or procedures - I mean, it would be far cooler to be in a Reiki massage test or hot rock massage at the Elms spa - but I am willing to have or do what ever this takes to move this forward to a cure. OK - even the icky stuff. (though not as eagerly as the massage stuff)
So pray there is something I am eligible for and that is going to help. That would please me. But remember, even the failure of these trials move science forward and that is a big thing in itself.
(27th) So, I did discuss clinical trials and Dr. Rigden started a search for opportunities. The brain tumors make me ineligible for some, the fact that my tumors are not at all hormone sensitive knocked out a few, some things I am not a fit for - but there seem to be 2 possible and her researcher is looking for more since I reminded her I was VA eligible for military studies.
I had my IV port removed in December over the break. More Irony - I think the Greeks said a person makes plans and the gods giggle. So I have awful veins - even when I was young I could make an IV team cry when they had to stick me over and over - On Monday I meet with a surgeon to set up getting one back. It will make the long term medical stuff much easier and I can tell you it is an fairly easy in-and-out day surgery.
I get a handicapped parking sticker. When I come back in the fall, I won't have to park in Kansas with my carpool. See - silver lining.
Note to Chief Kyle - No-one has a turn of phrase like a retired Chief! I laughed for hours! My heart sister, Kathy keeps me living vicariously through her stories of school and all the things the non-traditional students are getting done and I really enjoy that. Spring breaks are coming!
My face is swollen up like a ball - not a good look! Sort of bowling ball. It is because of the steroids they gave me to reduce the swelling around the brain tumors and that worked - no vision problems or headaches. The steroids have to be tapered off very gradually - powerful stuff but Dr. Rigden says the swelling will recede as we do.
This upcoming round of chemo will not start for a bit - It looks like it will be done in multiple series of 2 session chemo increments with an evaluation of progress in between. But first I get some healing time and a break for preparation - so life is good.
I am going to be working with a dear friend on a American Cancer Society fundraiser --- A knitting thing. It will be in Lathrop but we are just now starting to work on the details.
Lori Barringer
http://lorib2mostories.blogspot.com/
So I was looking at some options before the Oncology meeting tomorrow. There are hundreds of clinical trials out there working toward discovering cures and treatments. I was astounded to find out that less then 5% of cancer patients participate in them. If it will advance the cause one millimeter - why would you not involve yourself? So if I am eligible, I will be leaping right on that one - I mean, I have cancer....Can I move this forward in any way?
Now, I am not looking forward to chemo or tests, or procedures - I mean, it would be far cooler to be in a Reiki massage test or hot rock massage at the Elms spa - but I am willing to have or do what ever this takes to move this forward to a cure. OK - even the icky stuff. (though not as eagerly as the massage stuff)
So pray there is something I am eligible for and that is going to help. That would please me. But remember, even the failure of these trials move science forward and that is a big thing in itself.
(27th) So, I did discuss clinical trials and Dr. Rigden started a search for opportunities. The brain tumors make me ineligible for some, the fact that my tumors are not at all hormone sensitive knocked out a few, some things I am not a fit for - but there seem to be 2 possible and her researcher is looking for more since I reminded her I was VA eligible for military studies.
I had my IV port removed in December over the break. More Irony - I think the Greeks said a person makes plans and the gods giggle. So I have awful veins - even when I was young I could make an IV team cry when they had to stick me over and over - On Monday I meet with a surgeon to set up getting one back. It will make the long term medical stuff much easier and I can tell you it is an fairly easy in-and-out day surgery.
I get a handicapped parking sticker. When I come back in the fall, I won't have to park in Kansas with my carpool. See - silver lining.
Note to Chief Kyle - No-one has a turn of phrase like a retired Chief! I laughed for hours! My heart sister, Kathy keeps me living vicariously through her stories of school and all the things the non-traditional students are getting done and I really enjoy that. Spring breaks are coming!
My face is swollen up like a ball - not a good look! Sort of bowling ball. It is because of the steroids they gave me to reduce the swelling around the brain tumors and that worked - no vision problems or headaches. The steroids have to be tapered off very gradually - powerful stuff but Dr. Rigden says the swelling will recede as we do.
This upcoming round of chemo will not start for a bit - It looks like it will be done in multiple series of 2 session chemo increments with an evaluation of progress in between. But first I get some healing time and a break for preparation - so life is good.
I am going to be working with a dear friend on a American Cancer Society fundraiser --- A knitting thing. It will be in Lathrop but we are just now starting to work on the details.
Lori Barringer
http://lorib2mostories.blogspot.com/
Saturday, February 23, 2008
Update 7
The package from Sharpsinc arrived and it looks so easy to use.
Well, the hair is going now - it has been increasingly brittle and breakable. Now it is departing at a rapid rate. It won't be back.
When I finished the chemo last time, the hair grew back thick and much to my shock it came back curly. Now, I always had thick stick-straight hair - even perms didn't take, so I spent the 15 months always being a bit surprised when I saw my reflection.
I'll miss that.
So I took the shower I had put off for a couple of days (poor Gene didn't even comment about the funk) and It is gone - except for a few random patches. Radiation hair loss doesn't hurt at all - the chemo loss was a bit achy but this was nothing. Just poof!
But a girl that was part of my car pool to the University, has told me that we should punk it out - paint the scalp and I laughed out loud - I love that she saw that in me. She is a great kid, attending college against big odds - her family wants her to get a job instead. She is brave, smart, and a wonderful young woman. And I can always put the salt and pepper wig on when I want to pretend to be a nice old lady.
Wigs are hot in the summer here though - So I guess I had better find some non-toxic color - sun blocks? for designs.....I have on the red fuzzy chemo cap and Gene told me he really loves me as a redhead.
Gotta love that man.
Lori Barringer
Well, the hair is going now - it has been increasingly brittle and breakable. Now it is departing at a rapid rate. It won't be back.
When I finished the chemo last time, the hair grew back thick and much to my shock it came back curly. Now, I always had thick stick-straight hair - even perms didn't take, so I spent the 15 months always being a bit surprised when I saw my reflection.
I'll miss that.
So I took the shower I had put off for a couple of days (poor Gene didn't even comment about the funk) and It is gone - except for a few random patches. Radiation hair loss doesn't hurt at all - the chemo loss was a bit achy but this was nothing. Just poof!
But a girl that was part of my car pool to the University, has told me that we should punk it out - paint the scalp and I laughed out loud - I love that she saw that in me. She is a great kid, attending college against big odds - her family wants her to get a job instead. She is brave, smart, and a wonderful young woman. And I can always put the salt and pepper wig on when I want to pretend to be a nice old lady.
Wigs are hot in the summer here though - So I guess I had better find some non-toxic color - sun blocks? for designs.....I have on the red fuzzy chemo cap and Gene told me he really loves me as a redhead.
Gotta love that man.
Lori Barringer
Wednesday, February 20, 2008
Sharps
Well - when I write these bits, I picture your familiar faces and sort of write to you - And I learned in Writing for the Internet last semester that you will have a wider audience than that out there -- but it really didn't seem likely.
But it was so - and I am blessed by a man that I never heard of, don't really know and never expected.
Romans 8:28 is a verse about evil being turned to a good purpose and I think this is an example of this.
It was the sharps disposal issue that I was so concerned about. I was contacted by the local Clinton county health department through a follow-up and I was impressed by that. But the answer was that the state currently does not mandate home sharps disposal - In Missouri, you use a approved sharps disposal unit or a heavy liquid laundry detergent bottle - put in the needles and lancets and put home sharps in the trash.
Now this concerns me. I have grandchildren, children, people I love - and I do not like the idea of this stuff in our landfills or randomly floating around. I was not satisfied by this answer. We really need to take better care of what we have been blessed with.
So here is a story and a solution:
Lori: I am the Chief Financial Officer of a Houston, Texas based company that manufactures products designed to disposal of small quantities of medical sharps. The company’s website is http://www.sharpsinc.com/. I saw your story on your blog about problems with sharps disposal. Our products facilitate the disposal of sharps using the US mail, thereby eliminating the need to find a place that will accept sharps for disposal. I also notice that you were retired military and a cancer survivor.
I would like to provide you with a few of our sharps disposal products free of charge. If you like the products, you may feel inclined to post the use of our products on your blog.
(Lori - The Cost for this is $29 and I think it is a better gift for our grandchildren than a savings bond - which would cost about the same - I will try to let you know how the process works for me but I won't build up a lot at one a day. So it may be a while to try it)
Please provide me with the number and size of syringes you currently have plus the number of syringes that you use a week. Also, the address where to send the product.
My son is in the US Army (stationed at Fort Drum, NY) and recently returned from a 15 month deployment in Iraq. So, needless to say, I have a very high regard for military personnel and do everything I can to support them.
(Lori )-- Here are some of the facts that he shared and a wonderful picture of his son - I prayed for that young man and his fellow soldiers that give us so much. Bless them both:
First of all, the EPA changed its guidance in December of 2004 to advise against throwing home generated sharps waste in the trash (even in an approved container). See link below:
http://www.epa.gov/epaoswer/other/medical/disposal.htm
Additionally, many states are now imposing stricter mandates related to sharps disposal. See link below: http://www.epa.gov/epaoswer/other/medical/programs.htm
California has actually enacted legislation that makes it illegal to throw a used syringe in the household trash. Many other states are considering similar legislation. As you can see the legislative landscape is changing greatly.
So, if you want to dispose of the syringes the proper way, please provide your address and I will send you some of our products (at no charge). It’s very easy to use and disposal is facilitated through the US mail. Our mailback product is one of the EPA listed solutions. Again, you can view our website to see all of our products.
With over 2 billion syringes disposed of outside the hospital and large healthcare setting, accidental needle sticks are a huge problem in the country.
I found you through the use of Google Alerts which push website, articles, blogs, etc….. to me that refer to sharps disposal.
Finally, feel free to post this information on your blog. Regards and thank you for your service to our country,
Dtusa
P.S. I have attached a picture of my soldier.
Sincerely,
David P. TusaExecutive Vice President, Chief Financial Officer and Business Development
Sharps Compliance, Inc.9220 Kirby Drive Suite 500Houston, Texas 77054Direct: 713-660-3514 Office: 713-432-0300Fax: 713-660-3574eMail: dtusa@sharpsinc.com
Lori Barringer
http://lorib2mostories.blogspot.com/
But it was so - and I am blessed by a man that I never heard of, don't really know and never expected.
Romans 8:28 is a verse about evil being turned to a good purpose and I think this is an example of this.
It was the sharps disposal issue that I was so concerned about. I was contacted by the local Clinton county health department through a follow-up and I was impressed by that. But the answer was that the state currently does not mandate home sharps disposal - In Missouri, you use a approved sharps disposal unit or a heavy liquid laundry detergent bottle - put in the needles and lancets and put home sharps in the trash.
Now this concerns me. I have grandchildren, children, people I love - and I do not like the idea of this stuff in our landfills or randomly floating around. I was not satisfied by this answer. We really need to take better care of what we have been blessed with.
So here is a story and a solution:
Lori: I am the Chief Financial Officer of a Houston, Texas based company that manufactures products designed to disposal of small quantities of medical sharps. The company’s website is http://www.sharpsinc.com/. I saw your story on your blog about problems with sharps disposal. Our products facilitate the disposal of sharps using the US mail, thereby eliminating the need to find a place that will accept sharps for disposal. I also notice that you were retired military and a cancer survivor.
I would like to provide you with a few of our sharps disposal products free of charge. If you like the products, you may feel inclined to post the use of our products on your blog.
(Lori - The Cost for this is $29 and I think it is a better gift for our grandchildren than a savings bond - which would cost about the same - I will try to let you know how the process works for me but I won't build up a lot at one a day. So it may be a while to try it)
Please provide me with the number and size of syringes you currently have plus the number of syringes that you use a week. Also, the address where to send the product.
My son is in the US Army (stationed at Fort Drum, NY) and recently returned from a 15 month deployment in Iraq. So, needless to say, I have a very high regard for military personnel and do everything I can to support them.
(Lori )-- Here are some of the facts that he shared and a wonderful picture of his son - I prayed for that young man and his fellow soldiers that give us so much. Bless them both:
First of all, the EPA changed its guidance in December of 2004 to advise against throwing home generated sharps waste in the trash (even in an approved container). See link below:
http://www.epa.gov/epaoswer/other/medical/disposal.htm
Additionally, many states are now imposing stricter mandates related to sharps disposal. See link below: http://www.epa.gov/epaoswer/other/medical/programs.htm
California has actually enacted legislation that makes it illegal to throw a used syringe in the household trash. Many other states are considering similar legislation. As you can see the legislative landscape is changing greatly.
So, if you want to dispose of the syringes the proper way, please provide your address and I will send you some of our products (at no charge). It’s very easy to use and disposal is facilitated through the US mail. Our mailback product is one of the EPA listed solutions. Again, you can view our website to see all of our products.
With over 2 billion syringes disposed of outside the hospital and large healthcare setting, accidental needle sticks are a huge problem in the country.
I found you through the use of Google Alerts which push website, articles, blogs, etc….. to me that refer to sharps disposal.
Finally, feel free to post this information on your blog. Regards and thank you for your service to our country,
Dtusa
P.S. I have attached a picture of my soldier.
Sincerely,
David P. TusaExecutive Vice President, Chief Financial Officer and Business Development
Sharps Compliance, Inc.9220 Kirby Drive Suite 500Houston, Texas 77054Direct: 713-660-3514 Office: 713-432-0300Fax: 713-660-3574eMail: dtusa@sharpsinc.com
Lori Barringer
http://lorib2mostories.blogspot.com/
Tuesday, February 19, 2008
More good times
So we went to the Japanese Steak house on Barry Woods road and the talented young man who cooked for us gave us a Stellar Show - Fast, Flashy, witty. Flying utensils - all the cool stuff. Food was great and we had so much fun. It made me happy. Thanks to the chef! Bless him.
Saturday, February 16, 2008
update 6
OK - these updates aren't going to be coming so fast or furious since there won't be many changes happening.
So Here's what I want you to do - Take the time to savor your life a little. In the rush of raising the kids, laundry, work, fixing the car, paying the taxes, doing the homework, all the survival stuff that rushes down on you like a neverending freight train - Notice the good stuff - take a moment - listen to the giggles, enjoy the company, notice a cardinal, saver the most tiny success - say - "this is good" Enjoy! Say "homework is a pain but I am doing it "- Decide what will make you happy - and point your life in the direction of that. Find your path and strive to be happy.
Did today's web crossword in 11:21 minutes - a personal best. So no worries yet.
We went to Hunan Gardens with Leah who ordered the Hunan Shrimp 4**** star hot - She didn't melt but she did sweat! My fortune cookie said "Nothing can keep you from your goals" - but Gene's said "A blonde from afar has something interesting for you." We had a good laugh over those possibilities and teased him unmercifully!
I am having a hell of a time finding legal sharps disposal - I asked the Drs (GP and RO), Pharmacy, hospital - they don't take them - even though I have a legal sharps disposal container. Lathrop City Hall had no input. Clinton County health department has no program (they did follow-up with the answer below) and my trash company has unlisted their phone # - It is sort of 2 guys in a truck operation but still......So my ancestors may be gathered around a sharps container in the attic saying "What did she keep that for?" I thought you couldn't just put it in the trash for the landfill - that would be stupid. Well, it is stupid and exactly what they say to do - in an approved sharps container or a liquid laundry detergent container, home sharps go in the trash.
Allison sent me this - I roared. Humor is great.
Last night my sister and I were sitting in the den and I said to her, 'I never want to live in a vegetative state, dependent on some machine,wires, and fluids from a bottle to keep me alive. That would be no quality of life at all, If that ever happens, just pull the plug.'
So she got up, unplugged the computer, and threw out my wine. She's such a bitch.
Went up to disenroll at MWSU - That took some effort. It was good to see everyone. The Non-traditional Lounge is a blessing and people there are so great. I am so proud of them.
Ryan and I are boiling up some lobster today. We are going to a japanese steak house with Leah on Monday.
Lori Barringer
http://lorib2mostories.blogspot.com/
Everyone who lives, diesBut not everyone who dies has lived.
No rest is as good as the one that comes after an endeavor.No accomplishment is as satisfying as one that contained doubt.And no courage is as great as one that included fear.
The same thing that makes you live can kill you in the end.
Everything is funny if you wait long enough.
So Here's what I want you to do - Take the time to savor your life a little. In the rush of raising the kids, laundry, work, fixing the car, paying the taxes, doing the homework, all the survival stuff that rushes down on you like a neverending freight train - Notice the good stuff - take a moment - listen to the giggles, enjoy the company, notice a cardinal, saver the most tiny success - say - "this is good" Enjoy! Say "homework is a pain but I am doing it "- Decide what will make you happy - and point your life in the direction of that. Find your path and strive to be happy.
Did today's web crossword in 11:21 minutes - a personal best. So no worries yet.
We went to Hunan Gardens with Leah who ordered the Hunan Shrimp 4**** star hot - She didn't melt but she did sweat! My fortune cookie said "Nothing can keep you from your goals" - but Gene's said "A blonde from afar has something interesting for you." We had a good laugh over those possibilities and teased him unmercifully!
I am having a hell of a time finding legal sharps disposal - I asked the Drs (GP and RO), Pharmacy, hospital - they don't take them - even though I have a legal sharps disposal container. Lathrop City Hall had no input. Clinton County health department has no program (they did follow-up with the answer below) and my trash company has unlisted their phone # - It is sort of 2 guys in a truck operation but still......So my ancestors may be gathered around a sharps container in the attic saying "What did she keep that for?" I thought you couldn't just put it in the trash for the landfill - that would be stupid. Well, it is stupid and exactly what they say to do - in an approved sharps container or a liquid laundry detergent container, home sharps go in the trash.
Allison sent me this - I roared. Humor is great.
Last night my sister and I were sitting in the den and I said to her, 'I never want to live in a vegetative state, dependent on some machine,wires, and fluids from a bottle to keep me alive. That would be no quality of life at all, If that ever happens, just pull the plug.'
So she got up, unplugged the computer, and threw out my wine. She's such a bitch.
Went up to disenroll at MWSU - That took some effort. It was good to see everyone. The Non-traditional Lounge is a blessing and people there are so great. I am so proud of them.
Ryan and I are boiling up some lobster today. We are going to a japanese steak house with Leah on Monday.
Lori Barringer
http://lorib2mostories.blogspot.com/
Everyone who lives, diesBut not everyone who dies has lived.
No rest is as good as the one that comes after an endeavor.No accomplishment is as satisfying as one that contained doubt.And no courage is as great as one that included fear.
The same thing that makes you live can kill you in the end.
Everything is funny if you wait long enough.
Monday, February 11, 2008
Update 5
Well, I got a great story from a friend who served up some ice cream to her family and found out the next day that she had put it away in the microwave. Well, that made my day.
Had a good day Friday - the treatment goes so fast - just a blip in the day. Spent the morning with Leah, sorting out some car repairs, then shopping - Ate at her work at Bob Evans for lunch with her and Gene. Ah, life is filled with such simple pleasures - spending time with loved ones. Fun. We had a fire in the fireplace Sunday and spent the day computing together. We take the simplest and sweetest things for granted. This makes you pay attention.
We put in a new garage door opener on Saturday - Feels very uptown to park in the actual garage! Of course, in keeping with American values, the other half is filled with junk.
2/27/08 is my first Chemo meeting at 2pm and until then I wouldn't really know what we have planned - That is also my last day at radiation. I think it is going to be an oral regime but I may have to have a port shunt inserted. Hard to say at this juncture.
My sisters, Andrea, Barb, and BIL, Albert are going to visit around March 28 to 30. That is the end of the spring break for Ryan, so there will be some overlap which is cool.
So, Mondays are review days with the doctor - starting to reduce, gradually, the steroids. The insulin shots seem to have gotten the blood sugar under control. I feel good. Here are some pictures of the mask and machines.
Had a good day Friday - the treatment goes so fast - just a blip in the day. Spent the morning with Leah, sorting out some car repairs, then shopping - Ate at her work at Bob Evans for lunch with her and Gene. Ah, life is filled with such simple pleasures - spending time with loved ones. Fun. We had a fire in the fireplace Sunday and spent the day computing together. We take the simplest and sweetest things for granted. This makes you pay attention.
We put in a new garage door opener on Saturday - Feels very uptown to park in the actual garage! Of course, in keeping with American values, the other half is filled with junk.
2/27/08 is my first Chemo meeting at 2pm and until then I wouldn't really know what we have planned - That is also my last day at radiation. I think it is going to be an oral regime but I may have to have a port shunt inserted. Hard to say at this juncture.
My sisters, Andrea, Barb, and BIL, Albert are going to visit around March 28 to 30. That is the end of the spring break for Ryan, so there will be some overlap which is cool.
So, Mondays are review days with the doctor - starting to reduce, gradually, the steroids. The insulin shots seem to have gotten the blood sugar under control. I feel good. Here are some pictures of the mask and machines.
Lori Barringer
http://lorib2mostories.blogspot.com/
"There are worse crimes than burning books. One of them is not reading them. "-- Joseph Alexandrovitch Brodsky, 1991, Russian-American poet, b. St. Petersburg and exiled 1972 (1940-1996)
"They that can give up essential liberty to obtain a little temporary safety deserve neither liberty nor safety."-- Benjamin Franklin, Historical Review of Pennsylvania, 1759
http://lorib2mostories.blogspot.com/
"There are worse crimes than burning books. One of them is not reading them. "-- Joseph Alexandrovitch Brodsky, 1991, Russian-American poet, b. St. Petersburg and exiled 1972 (1940-1996)
"They that can give up essential liberty to obtain a little temporary safety deserve neither liberty nor safety."-- Benjamin Franklin, Historical Review of Pennsylvania, 1759
Thursday, February 7, 2008
Update 4
Well, we have been having an interesting winter - got a good load of snow dumped on us tonight on top of slush and freezing rain.
One of the classes I was taking was English 220 - 'Approaches to Literature,' I think. We were studying terms - So, Irony - Getting killed in a car wreck on the way to radiation therapy - Man, I would have aced that class.....
We are going to skip today (Wednesday) - We have 4 inches of snow and it is still coming down - Being on an unpaved road with few neighbors - well, we get plows after everyone else. The doctor says we could wait up to a week with no harm.
I did get the wig on order - I gave the old ones to the high school drama department for the school plays. I'll pick up my free one when weather permits at the American Cancer Society. Tlcdirect.org has really good, reasonably priced wigs.
My cousin, Lucy reminded me about the family trait of making lists and then forgetting it at home. Oh yeah! That cracked me up! I have so been there! I also write things on the list after I do them - just so I can cross them off at the end of the day.
My AF friend, Nancy, is my 6 degrees of separation person from all the rest of the world! I have heard from so many old Air Force friends that I have lost touch with - What great memories and how cool to hear from them!
The toughest thing of all, after my experience with going through my mother's cancer, is feeling helpless. You are all wanting to do something and there isn't much to actually do - I used to wish someone would try to mug me in the hospital parking lot after a visit with Mom - I mean, on tv, you see them lurking everywhere, right? It would have been a real relief to whale on someone.....Never a bad guy when you need one. I know it is hard to be out there and not able to do anything about this.
So, I believe in the power of prayer and I truly believe it helps. I will try to keep on doing the next thing and trudging through this. I appreciate the research and information and the caring.
The updates will slow down as we settle into a routine.
The steroids to shrink the tumors work well, but plays havoc with the blood sugar - I had to learn to inject insulin. It isn't to0 hard, surprisingly. Hopefully this will be a temporary thing until the radiation takes care of the brains.
Man, it is quick - I think Gene can sit in the car with the engine running. Today it took a little longer because they had to do an x-ray for position, but then your head slides in under the mask and a quick blue light shines on you. No smoke or glowing hair..... Now if I can convince Gene that 30 minutes early is not the same as right on time it will be quite quick.
Weirdly, I keep getting requests for being added to the list - So I am going to post this on a blog too so people can get caught up in case they missed out on the earlier posts. It was getting time consuming to get them caught up. http://lorib2mostories.blogspot.com/
Love,
Lori
One of the classes I was taking was English 220 - 'Approaches to Literature,' I think. We were studying terms - So, Irony - Getting killed in a car wreck on the way to radiation therapy - Man, I would have aced that class.....
We are going to skip today (Wednesday) - We have 4 inches of snow and it is still coming down - Being on an unpaved road with few neighbors - well, we get plows after everyone else. The doctor says we could wait up to a week with no harm.
I did get the wig on order - I gave the old ones to the high school drama department for the school plays. I'll pick up my free one when weather permits at the American Cancer Society. Tlcdirect.org has really good, reasonably priced wigs.
My cousin, Lucy reminded me about the family trait of making lists and then forgetting it at home. Oh yeah! That cracked me up! I have so been there! I also write things on the list after I do them - just so I can cross them off at the end of the day.
My AF friend, Nancy, is my 6 degrees of separation person from all the rest of the world! I have heard from so many old Air Force friends that I have lost touch with - What great memories and how cool to hear from them!
The toughest thing of all, after my experience with going through my mother's cancer, is feeling helpless. You are all wanting to do something and there isn't much to actually do - I used to wish someone would try to mug me in the hospital parking lot after a visit with Mom - I mean, on tv, you see them lurking everywhere, right? It would have been a real relief to whale on someone.....Never a bad guy when you need one. I know it is hard to be out there and not able to do anything about this.
So, I believe in the power of prayer and I truly believe it helps. I will try to keep on doing the next thing and trudging through this. I appreciate the research and information and the caring.
The updates will slow down as we settle into a routine.
The steroids to shrink the tumors work well, but plays havoc with the blood sugar - I had to learn to inject insulin. It isn't to0 hard, surprisingly. Hopefully this will be a temporary thing until the radiation takes care of the brains.
Man, it is quick - I think Gene can sit in the car with the engine running. Today it took a little longer because they had to do an x-ray for position, but then your head slides in under the mask and a quick blue light shines on you. No smoke or glowing hair..... Now if I can convince Gene that 30 minutes early is not the same as right on time it will be quite quick.
Weirdly, I keep getting requests for being added to the list - So I am going to post this on a blog too so people can get caught up in case they missed out on the earlier posts. It was getting time consuming to get them caught up. http://lorib2mostories.blogspot.com/
Love,
Lori
Update 3
Today I had the fitting(?) for the radiation. They have to fit you with a coarse face mesh and fasten it to a table around your head, and let it meld to your head. My claustrophobic friends would have dropped dead right there. (right, Kathy?) Then they measure your head and figure the angles. The funny thing is that after they did the cat can (5 quick minutes) they took the mask off - and I always thought my nose was on the big side but it looked small. Funny how you perceive yourself. I had a head scan once, for headaches and they said I had a thick skull - Is anyone surprised?
Any way this part doesn't seem so bad - But anything that doesn't involve stomach upset is cool with me. The hair will be gone, fatigue is a probable, and then he said there may be some short term memory loss. He looked very confused when both Gene and Ryan cracked up....When they could speak, they said "How will we tell?"
I don't remember names, I always had to write in my calendar why the kids were grounded and for how long, and if I didn't have a dayrunner.....But now, my friend, I am going to say: Well, I had radiation, you know - and look
'Piiieeetyful" and if you let me get away with that....I'll sell you Arizona beach front (at an obscene profit).
So, weather permitting, I go in for the first treatment tomorrow at 8 am. The Dexamethasone, a steroid, has fixed the vision issues and is supposed to stop any swelling around the tumor. I feel like a slacker right now. Strong and healthy. And what passes for normal for me...
So here is my visualization for my friends that like alternative healing: Picture the old Wizard of Oz wicked witch of the West - Green and icky - That is the brain tumors and "I'm melting, melting" - That's my vision and you are welcome to share it!
Gene and I went out to a fine Kansas City restaurant - Lidia's and they gave us a very romantic corner table - It was so fun.
Today I voted, ate at the local cafe - rumor mill already let everyone know so that was easy, ate lunch at Panera Bread, and then got to have coffee with Leah at work - weather had us the only customers - So I am feeling very spoiled and self- satisfied.
So here is the plan - I want to see Leah, Daiquiri, Josh, Kathy, and Ryan graduate. I plan on going back to school in the fall - I only have 3 semesters to graduate myself. I am going to be very unsatisfied with 3 Associates and no bachelor's and may have to haunt Missouri Western.
Then I am planning an Irish Wake at a pub in Weston - so start saving up stories to tell over a jar of whiskey. With this five year plan, you should have plenty of time. I may ask my friend, Sarah, to videotape it for future generations. That should be a hoot. I have a colorful past.
Life is good - Love to all.
Lori
Any way this part doesn't seem so bad - But anything that doesn't involve stomach upset is cool with me. The hair will be gone, fatigue is a probable, and then he said there may be some short term memory loss. He looked very confused when both Gene and Ryan cracked up....When they could speak, they said "How will we tell?"
I don't remember names, I always had to write in my calendar why the kids were grounded and for how long, and if I didn't have a dayrunner.....But now, my friend, I am going to say: Well, I had radiation, you know - and look
'Piiieeetyful" and if you let me get away with that....I'll sell you Arizona beach front (at an obscene profit).
So, weather permitting, I go in for the first treatment tomorrow at 8 am. The Dexamethasone, a steroid, has fixed the vision issues and is supposed to stop any swelling around the tumor. I feel like a slacker right now. Strong and healthy. And what passes for normal for me...
So here is my visualization for my friends that like alternative healing: Picture the old Wizard of Oz wicked witch of the West - Green and icky - That is the brain tumors and "I'm melting, melting" - That's my vision and you are welcome to share it!
Gene and I went out to a fine Kansas City restaurant - Lidia's and they gave us a very romantic corner table - It was so fun.
Today I voted, ate at the local cafe - rumor mill already let everyone know so that was easy, ate lunch at Panera Bread, and then got to have coffee with Leah at work - weather had us the only customers - So I am feeling very spoiled and self- satisfied.
So here is the plan - I want to see Leah, Daiquiri, Josh, Kathy, and Ryan graduate. I plan on going back to school in the fall - I only have 3 semesters to graduate myself. I am going to be very unsatisfied with 3 Associates and no bachelor's and may have to haunt Missouri Western.
Then I am planning an Irish Wake at a pub in Weston - so start saving up stories to tell over a jar of whiskey. With this five year plan, you should have plenty of time. I may ask my friend, Sarah, to videotape it for future generations. That should be a hoot. I have a colorful past.
Life is good - Love to all.
Lori
Update 2
I'm getting out of the hospital today.
Ok. We met a radiation oncologist last night I will be starting 3 weeks of radiation - 5 days of 15 minutes each week and then in 4-6 weeks - to allow the tumor to shrink or vanish - another scan, and if they are still there, targeted radiation (maybe Gamma Knife). This is just for the brain stuff. My hair will be gone. The initial evaluation for the radiation will be tomorrow afternoon and I'll start the treatment on Wednesday.
Then I will start the intensive systematic chemo in 3 weeks for the heart, lungs, wherever else.
Unfortunately, fight or not, the prognosis is not great - I have an estimated 2 years or so. Remember, now, that they told my Mom 6 months and she had 3 good years - and I am so above average! But I am sorry. Sometimes you can fight and still lose. I'll do my best to make the record books. My oncologist, Jamie Rigden, has become a friend. She cried with me - We were so happy when we thought we beat it. She'll be a good partner for the battle.
I have plans to have a celebration for Leah's graduation on May 23 - (Ryan's Birthday, too) We will do a picnic on Saturday and a brunch on Sunday. The oncologist says we can work around this. My local friends will help me get it done so you don't have to pack a covered dish! We will have a get-together at a local casino Friday for all-you-can-eat crab legs and their super Buffet but that will have to be Dutch treat. I'll be glad to see you, if you can make it. I will still be up and around, although bald. I am kind of cute bald but I have some good wigs.
I have had a great life so far. I am so proud of my family - They are good people and all four kids have grownup to be fine adults (with 2 of them acquiring fine women as spouses). Plus I have the four cutest, smartest, sneakiest and most amusingly mischievous (the parents define it differently) grandchildren (Grand children are the best revenge!) I have been blessed by your love and friendship. So it goes...
How many people have lived in a tipi, flown in a fighter jet, lived in and visited Europe, raised hell, been an evil scheduler for a consulting firm of geniuses, and made some small differences in the world. I have some regrets, but no-one gets to be a grownup without those, alas. I wish I had been less selfish at times and kinder at others. I married Gene and have been blessed by that.
I have faith, so I am not afraid of being dead - the process of getting there, well not looking forward to that so much. In the meantime, I will keep living as much as I can and enjoying what time I am given. Keep in touch.
Lori Barringer
Ok. We met a radiation oncologist last night I will be starting 3 weeks of radiation - 5 days of 15 minutes each week and then in 4-6 weeks - to allow the tumor to shrink or vanish - another scan, and if they are still there, targeted radiation (maybe Gamma Knife). This is just for the brain stuff. My hair will be gone. The initial evaluation for the radiation will be tomorrow afternoon and I'll start the treatment on Wednesday.
Then I will start the intensive systematic chemo in 3 weeks for the heart, lungs, wherever else.
Unfortunately, fight or not, the prognosis is not great - I have an estimated 2 years or so. Remember, now, that they told my Mom 6 months and she had 3 good years - and I am so above average! But I am sorry. Sometimes you can fight and still lose. I'll do my best to make the record books. My oncologist, Jamie Rigden, has become a friend. She cried with me - We were so happy when we thought we beat it. She'll be a good partner for the battle.
I have plans to have a celebration for Leah's graduation on May 23 - (Ryan's Birthday, too) We will do a picnic on Saturday and a brunch on Sunday. The oncologist says we can work around this. My local friends will help me get it done so you don't have to pack a covered dish! We will have a get-together at a local casino Friday for all-you-can-eat crab legs and their super Buffet but that will have to be Dutch treat. I'll be glad to see you, if you can make it. I will still be up and around, although bald. I am kind of cute bald but I have some good wigs.
I have had a great life so far. I am so proud of my family - They are good people and all four kids have grownup to be fine adults (with 2 of them acquiring fine women as spouses). Plus I have the four cutest, smartest, sneakiest and most amusingly mischievous (the parents define it differently) grandchildren (Grand children are the best revenge!) I have been blessed by your love and friendship. So it goes...
How many people have lived in a tipi, flown in a fighter jet, lived in and visited Europe, raised hell, been an evil scheduler for a consulting firm of geniuses, and made some small differences in the world. I have some regrets, but no-one gets to be a grownup without those, alas. I wish I had been less selfish at times and kinder at others. I married Gene and have been blessed by that.
I have faith, so I am not afraid of being dead - the process of getting there, well not looking forward to that so much. In the meantime, I will keep living as much as I can and enjoying what time I am given. Keep in touch.
Lori Barringer
Update 1
I'll be meeting with a team of specialists on Monday and spending the weekend in test mode. They did some aeration saline thing and I do not have holes in my heart. My carotid (SP?) sonogram came out well - minor plaque, good flow, and she said she could tell I don't smoke. I have a bone scan due today and last night a contrast body ct Scan.
A bone scan is a test that detects areas of increased or decreased bone metabolism (turnover). The test is meant to identify abnormal processes involving the bone.(like tumors) They use a small amount of bone-seeking radioactive trace and they track how much collects in the bones. It is painless but boring as you lay around in the scanner. And the radioactivity is low so I will still need a night light. It wasn't bad to get through. I don't have bone involvement.
The meds (a steroid, Decadron) they gave me to shrink the swelling around the tumor have done the trick and the mild headache and vision weirdness have stopped. Under the list of side effects they have "Psychic disturbances" - Boy, wouldn't becoming a psychic be an cool side effect to get? So when Gene came in today I said, "Wait, Wait, I'm getting something -- You had to drive through slush and snow and saw a bunch of accidents. And Later I see you bringing Doritos - Cool Ranch..." I had watched the weather and traffic report. The jury is still out on the Doritos.
Well, I got the news - it's bad. I have growths in my lung, bronchial tube, heart and lymph nodes --- little growths but sigh..... the liver, pancreus isn't involved but I will have to do chemo and radiation - And yes, I am going to do the chemo - although I expect lots of praise - since I really, really don't want to.
The neuron surgeon said he doesn't think he should remove the tumor in my brain that is accessible because it would delay the start of the chemo, be like shipping a chip out of an iceberg (just call me The Titanic) and delay radiation while I had to heal. Since the original tumor grew so fast, we agree that the delay would not be a good thing.
Love,
Lori Barringer
A bone scan is a test that detects areas of increased or decreased bone metabolism (turnover). The test is meant to identify abnormal processes involving the bone.(like tumors) They use a small amount of bone-seeking radioactive trace and they track how much collects in the bones. It is painless but boring as you lay around in the scanner. And the radioactivity is low so I will still need a night light. It wasn't bad to get through. I don't have bone involvement.
The meds (a steroid, Decadron) they gave me to shrink the swelling around the tumor have done the trick and the mild headache and vision weirdness have stopped. Under the list of side effects they have "Psychic disturbances" - Boy, wouldn't becoming a psychic be an cool side effect to get? So when Gene came in today I said, "Wait, Wait, I'm getting something -- You had to drive through slush and snow and saw a bunch of accidents. And Later I see you bringing Doritos - Cool Ranch..." I had watched the weather and traffic report. The jury is still out on the Doritos.
Well, I got the news - it's bad. I have growths in my lung, bronchial tube, heart and lymph nodes --- little growths but sigh..... the liver, pancreus isn't involved but I will have to do chemo and radiation - And yes, I am going to do the chemo - although I expect lots of praise - since I really, really don't want to.
The neuron surgeon said he doesn't think he should remove the tumor in my brain that is accessible because it would delay the start of the chemo, be like shipping a chip out of an iceberg (just call me The Titanic) and delay radiation while I had to heal. Since the original tumor grew so fast, we agree that the delay would not be a good thing.
Love,
Lori Barringer
Here we go again
I lost vision temporarily on Friday and went to the ER - They thought it was a stroke. The good news, it wasn't. The bad news, I have two growths in my brain. So it looks like the cancer took up travel and tourism, after all. They haven't finished testing yet, I have a contrast Cat scan and a bone scan to get through and then a meeting with all kinds of specialists on Monday.
The neurosurgeon or one of the experts said chemo doesn't work in the brain so I "only" have to do radiation.
I'll know more on Monday - Let me know if you want to stay on the list. I won't blame you if you don't.
I am still a tough old broad and I'll fight this as much as I can. Keep in touch - Gene figured out how to hook me into the hospital wireless.
Larry and Mark, you can use this brain thing as an excuse to forgive me for voting against Bush last time - although I was right. But you can tell yourselves I was not in my right mind. ;}
Lori Barringer
The Best Living Will I've Seen
I, Lori , being of sound mind and body, do not wish to be kept alive indefinitely by artificial means. Under no circumstances should my fate be put in the hands of pinhead politicians who couldn't pass ninth-grade biology if their lives depended on it, or lawyers / doctors interested in simply running up the bills or avoiding lawsuits. If a reasonable amount of time passes and I fail to ask for at least one of the following:
Glass of wine
chocolate
Books
chocolate
mashed potatoes
chocolate
Baileys
chocolate
steak and baked potatoes
cream gravy
chocolate
Mexican food
chocolate
French fries
chocolate
Pizza
chocolate
ice cream
cup of tea
Chocolate
Sex
Chocolate
Combination fried rice
It should be presumed that I won't ever get better. When such a determination is reached, I hereby instruct my appointed person and attending physicians to pull the plug, reel in the tubes and call it a day.
The neurosurgeon or one of the experts said chemo doesn't work in the brain so I "only" have to do radiation.
I'll know more on Monday - Let me know if you want to stay on the list. I won't blame you if you don't.
I am still a tough old broad and I'll fight this as much as I can. Keep in touch - Gene figured out how to hook me into the hospital wireless.
Larry and Mark, you can use this brain thing as an excuse to forgive me for voting against Bush last time - although I was right. But you can tell yourselves I was not in my right mind. ;}
Lori Barringer
The Best Living Will I've Seen
I, Lori , being of sound mind and body, do not wish to be kept alive indefinitely by artificial means. Under no circumstances should my fate be put in the hands of pinhead politicians who couldn't pass ninth-grade biology if their lives depended on it, or lawyers / doctors interested in simply running up the bills or avoiding lawsuits. If a reasonable amount of time passes and I fail to ask for at least one of the following:
Glass of wine
chocolate
Books
chocolate
mashed potatoes
chocolate
Baileys
chocolate
steak and baked potatoes
cream gravy
chocolate
Mexican food
chocolate
French fries
chocolate
Pizza
chocolate
ice cream
cup of tea
Chocolate
Sex
Chocolate
Combination fried rice
It should be presumed that I won't ever get better. When such a determination is reached, I hereby instruct my appointed person and attending physicians to pull the plug, reel in the tubes and call it a day.
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