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/
Thursday, February 28, 2008
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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