I am running clean out of ideas to motivate Melissa. She just has no energy or desire to do much of anything. Doctors don't even seem to suggest being more active. I hate to get into details, but I have to say that I worry more overall health than her neurological health, these days. I get so frustrated, not necessarily with her, but with the situation.
I have to say, there are several organizations that preach "Getting back to living" to cancer patients. Unless you are rich, well supported, or already live a motivated, physical lifestyle (when diagnosed), chances are just "getting back to living" is about the hardest damn thing you could do. Sure, a runner/jogger getting back to those activities seems like progress, but what about the person who just went to work, but now, can not? What about people without active lifestyles, now hindered by illness and the multiple side-effects of medications? Then the astronomical bills....how will you resume you yearly family vacation with no money? How are you to pay for a gym or someone to motivate you? My point is, "getting back to living" is just the wrong way to go about looking at life with/after cancer. You never get back to living like you were....things are never the same. "Re-inventing living"...now, there is a slogan worth spreading...because for most in our situation, you have to go back to square one and figure out how to be healthy and happy all over again.
Another work week comes to a close. They go by very fast....but not nearly as fast as the weekends. haha...wish the founding fathers would have really pushed for that 3 day weekend. We have a much needed break on the horizon. San Diego looks amazing. I just hope that it does not turn out like the many other small trips we have done recently, which involved Melissa mainly in bed the entire time.
Anyone interested in helping with our trip, please contact me at cwbarr01@gmail.com . 3 Little Birds 4 Life is working hard putting together Melissa's wish, but is still looking for air-line miles, donations, and contacts/resources that could help. They have done a great job, already securing Zoo & Safari park passes, Carousel rides in Balboa park, and who knows what else! I am impressed, really. I think, once my life settles down some, I want to work with them to help grant wishes for others. I think few, besides those involved with a loved one fighting cancer, understand how much gifts like these mean to the entire family, not just the patient. In fact, I would dare say that most patients wish for things they know will benefit the rest of the family more than themselves. For us, this trip is the only thing we have had to look forward too lately.
Monday, May 13, 2013
Thursday, May 9, 2013
5/8/2013
In the cancer world, no health news is not good news or bad news. No news is, well, no news. It is something you get dreadfully used to when dealing with cancer. So, obviously, I have little to report. The posting for the 22nd of this month should have a pretty important update.
I have been trying to push Melissa back to some level of activity. It is hard because, since this all started, I have been more of the "comforter" than the "motivator", and I fear, shifting roles could result is some hurt feelings or misunderstood intentions. I just want her back, ya know. I not sure she is convinced she can get back to where she was.
I feel like I am in a constant state of struggle...trying to balance work, our son, worry, the house, the bills....it is a lot of stress. Most times, I handle the stress pretty well; sometimes I don't; sometimes I rock back and forth from both extremes in the same day or hour. I would love to have more time to focus on family, but, like most Americans, I have to "feed the monster". What I mean by that, is I work hard to pay my bills knowing all the time that I will likely never be able to pay them all off, much less ever retire, live debt free, or save money. Even before cancer, I felt it was a near impossible up-hill battle...after a cancer diagnosis, though, I know I will likely never buy a house, get a decent rate on a car loan, or have affordable health care. Sure, I could be one of the millions milking the system and become yet another burden on society...but I choose not to. Call it pride or "having principals"...really, it is what I feel like I am supposed to do.
I had a great conversation with the president of an outstanding non-profit, The Chis Elliott Fund - http://chriselliottfund.org/. No matter if you are a new brain cancer patient, in treatment, or a survivor, you should reach out to them. For new patients and those in treatment, they offer some priceless knowledge on Brain cancer and the chance to put your medical history in front of a panel of the best doctors in the United States for a collage of second opinions....something that, frankly, could save your life. It is unfortunate that our health care system seems more geared towards making money than curing disease...after all, it is a business. Every case of brain cancer is different.... literally thousands of variations, yet there are only 3 generally accepted forms of treatment. The Chris Elliott Fund can help put in in touch with the doctor that best suites your needs...and if nothing else, reassure you that the doctors that are treating you are doing so with the best means of treatment available, saving you precious time. You should never just blindly trust a doctor. Sometimes, one form of treatment may declare you ineligible for a medical trial that could save your life. How is a normal person supposed to know these things? Most do not...and shouldn't, for that matter. We are all not neurologists. Who better to ask than people who live and breathe brain cancer every day.
I have been trying to push Melissa back to some level of activity. It is hard because, since this all started, I have been more of the "comforter" than the "motivator", and I fear, shifting roles could result is some hurt feelings or misunderstood intentions. I just want her back, ya know. I not sure she is convinced she can get back to where she was.
I feel like I am in a constant state of struggle...trying to balance work, our son, worry, the house, the bills....it is a lot of stress. Most times, I handle the stress pretty well; sometimes I don't; sometimes I rock back and forth from both extremes in the same day or hour. I would love to have more time to focus on family, but, like most Americans, I have to "feed the monster". What I mean by that, is I work hard to pay my bills knowing all the time that I will likely never be able to pay them all off, much less ever retire, live debt free, or save money. Even before cancer, I felt it was a near impossible up-hill battle...after a cancer diagnosis, though, I know I will likely never buy a house, get a decent rate on a car loan, or have affordable health care. Sure, I could be one of the millions milking the system and become yet another burden on society...but I choose not to. Call it pride or "having principals"...really, it is what I feel like I am supposed to do.
I had a great conversation with the president of an outstanding non-profit, The Chis Elliott Fund - http://chriselliottfund.org/. No matter if you are a new brain cancer patient, in treatment, or a survivor, you should reach out to them. For new patients and those in treatment, they offer some priceless knowledge on Brain cancer and the chance to put your medical history in front of a panel of the best doctors in the United States for a collage of second opinions....something that, frankly, could save your life. It is unfortunate that our health care system seems more geared towards making money than curing disease...after all, it is a business. Every case of brain cancer is different.... literally thousands of variations, yet there are only 3 generally accepted forms of treatment. The Chris Elliott Fund can help put in in touch with the doctor that best suites your needs...and if nothing else, reassure you that the doctors that are treating you are doing so with the best means of treatment available, saving you precious time. You should never just blindly trust a doctor. Sometimes, one form of treatment may declare you ineligible for a medical trial that could save your life. How is a normal person supposed to know these things? Most do not...and shouldn't, for that matter. We are all not neurologists. Who better to ask than people who live and breathe brain cancer every day.
5/6/2013 - 5/7/2013
I love blogging, though I would much rather it not be under these circumstances. It is a lot easier than most think. For me, laying my thoughts out in writing has always come a touch easier than trying to present them verbally, but I do love a good conversation. The best general part of blogging, for me, is being able to go back and read what I wrote months back. The blog serves several other functions and is quite handy for people dealing with Cancer in their lives. The blog has helped limited phone calls and having to answer the same questions over and over. The blog is also a great place to send someone who wants to know your story...one that happens so fast, in such a blur, that the only way to get the entire story is by documented record.
You never know who might read your blog. I joke all the time that "You never know, maybe Opera will read the blog." Not sure what would happen if she did...haha. My blog has touched many people, besides my family and friends. From fellow brain tumor warriors to a nice kid doing a high-school project on how hope effects recovery, I have been able to tell me story to many many people.
Blogging is far easier than most think. There are many websites to choose from to host your blog, but I do like Blogger. The mobile app needs some work, but the rest of the site is easy to use and navigate. Blogger also has an extensive help section, to tackle even the wildest of questions.
When in doubt, blog it out!
You never know who might read your blog. I joke all the time that "You never know, maybe Opera will read the blog." Not sure what would happen if she did...haha. My blog has touched many people, besides my family and friends. From fellow brain tumor warriors to a nice kid doing a high-school project on how hope effects recovery, I have been able to tell me story to many many people.
Blogging is far easier than most think. There are many websites to choose from to host your blog, but I do like Blogger. The mobile app needs some work, but the rest of the site is easy to use and navigate. Blogger also has an extensive help section, to tackle even the wildest of questions.
When in doubt, blog it out!
Tuesday, May 7, 2013
5/3/2013 - 5/5/2013
I emailed the video we were asked to create for Melissa's Wish with 3 Little Birds 4 Life , though, I can not seem to get Blogger to post it. You can also find it on Facebook, shared on my page! Please like the Louisville branch of 3 Little Birds 4 Life on Facebook!
There are many, many ways anyone reading this blog can help grant Melissa's wish (for a vacation to see family in San Diego, CA). Air line points, donations, donor contacts...simply contact me or 3 Little Birds 4 Life and we will be glad to see how you can help!
Here is the link to 3 Little Birds 4 Life 's Website:
http://3littlebirds4life.org/
Here is the link to 3 Little Birds 4 Life 's Facebook page:
https://www.facebook.com/pages/3-Little-Birds-4-Life/165418566886226
Here is the link to 3 Little Birds 4 Life 's - Louisville Facebook page:
https://www.facebook.com/pages/3-Little-Birds-4-Life-Louisville/513022332087365
For those with a special desire to really work to help Melissa's wish come true, please email me or message me on Facebook so I can get your contact information so that the non-profit helping grant Melissa's wish can send you a letter with details.
As you can tell, the launch of this fundraiser for her wish is the highlight of our lives right now. We get so little encouragement from doctors. Encouragement takes some kind of updates or information about whether you are beating this thing. Really, you get no information for months. Basically, we know little more than when this all started. You are prescribed poisons and countless medications and treatments for months on end, and unlike building a house, where your progress can be witnessed, you have no idea if the treatments or medications are doing any good at all. It is very gradually agonizing. It is nice to have something you know will be great to look forward to. I think it is an even more special wish because it is allowing us to do something that, frankly, we would never be able to afford to do on our own. Under the best of circumstances, despite whatever outcome, we are financially destroyed....it is something that comes with just about any serious cancer diagnosis.
There are many, many ways anyone reading this blog can help grant Melissa's wish (for a vacation to see family in San Diego, CA). Air line points, donations, donor contacts...simply contact me or 3 Little Birds 4 Life and we will be glad to see how you can help!
Here is the link to 3 Little Birds 4 Life 's Website:
http://3littlebirds4life.org/
Here is the link to 3 Little Birds 4 Life 's Facebook page:
https://www.facebook.com/pages/3-Little-Birds-4-Life/165418566886226
Here is the link to 3 Little Birds 4 Life 's - Louisville Facebook page:
https://www.facebook.com/pages/3-Little-Birds-4-Life-Louisville/513022332087365
For those with a special desire to really work to help Melissa's wish come true, please email me or message me on Facebook so I can get your contact information so that the non-profit helping grant Melissa's wish can send you a letter with details.
As you can tell, the launch of this fundraiser for her wish is the highlight of our lives right now. We get so little encouragement from doctors. Encouragement takes some kind of updates or information about whether you are beating this thing. Really, you get no information for months. Basically, we know little more than when this all started. You are prescribed poisons and countless medications and treatments for months on end, and unlike building a house, where your progress can be witnessed, you have no idea if the treatments or medications are doing any good at all. It is very gradually agonizing. It is nice to have something you know will be great to look forward to. I think it is an even more special wish because it is allowing us to do something that, frankly, we would never be able to afford to do on our own. Under the best of circumstances, despite whatever outcome, we are financially destroyed....it is something that comes with just about any serious cancer diagnosis.
Friday, May 3, 2013
5/2/2013
I am proud to announce that a wonderful wish organization, who serves only young adults with grave illnesses, has decided to grant a wish for Melissa!
Here is a link to there page:
http://3littlebirds4life.org/
Please visit their website...they are based out of St Louis but do amazing work throughout the country. Real difference-makers in the lives of those less-fortunate. Found Ashley Swip is incredible. Our wish coordinator Kristi is pretty fantastic too!
In the coming days, they will start a fundraiser page on their website that will contain a video that me and a friend created. If I can get Blogger to work right, I will post it on the blog too.
Melissa's wish....a week-long all-expense-paid family vacation to sunny San Diego at the end of June! We are both very excited. She gets to see some family (that we had no means of visiting on our own) and we get a much needed break from everything (something else we can not afford).
For now, those that want to help, donate money, lend resources or contacts need to contact me, via email - cwbarr01@gmail.com - and I will put you in contact with our wish designer/fundraiser. I will post when the fundraiser page is ready, then you can go there.
If you want to help, we will need assistance spreading the word, both verbally and on the internet/Facebook/Twitter/ETC and finding potential sponsors.
Medical Update: Melissa had an complete MRI with contrasts today. We will not get the results for a couple weeks...so pray, cross fingers...whatever you do, do it. Also attempted to order her Chemo pill today...one pharmacy wanted $18,000, but I am pretty sure that the pharmacy through our insurance will cover most of that if I order through them. Like 60 pills for $18K....oh, that is part of the problem with American medicine and politics...but no soap boxes for me today.
Here is a link to there page:
http://3littlebirds4life.org/
Please visit their website...they are based out of St Louis but do amazing work throughout the country. Real difference-makers in the lives of those less-fortunate. Found Ashley Swip is incredible. Our wish coordinator Kristi is pretty fantastic too!
In the coming days, they will start a fundraiser page on their website that will contain a video that me and a friend created. If I can get Blogger to work right, I will post it on the blog too.
Melissa's wish....a week-long all-expense-paid family vacation to sunny San Diego at the end of June! We are both very excited. She gets to see some family (that we had no means of visiting on our own) and we get a much needed break from everything (something else we can not afford).
For now, those that want to help, donate money, lend resources or contacts need to contact me, via email - cwbarr01@gmail.com - and I will put you in contact with our wish designer/fundraiser. I will post when the fundraiser page is ready, then you can go there.
If you want to help, we will need assistance spreading the word, both verbally and on the internet/Facebook/Twitter/ETC and finding potential sponsors.
Medical Update: Melissa had an complete MRI with contrasts today. We will not get the results for a couple weeks...so pray, cross fingers...whatever you do, do it. Also attempted to order her Chemo pill today...one pharmacy wanted $18,000, but I am pretty sure that the pharmacy through our insurance will cover most of that if I order through them. Like 60 pills for $18K....oh, that is part of the problem with American medicine and politics...but no soap boxes for me today.
Wednesday, May 1, 2013
5/1/2013
Melissa has battled head-aches a lot lately...has me concerned, but not much anyone can do.
I had a great run in with my dad yesterday. For those who do not know my dad, he has a gift of being able to converse with anyone...engaging in a good laugh and story...it is one of the traits I am most proud of inheriting from him. We talked about how you just can not force special moments. I have experienced this first hand many times since finding out Melissa's diagnosis. No matter how big the surprise or how special the treat, I was always left disappointed with the outcome. Many of you that know may father may not know that he lost his mom at a very early age to cancer. It is something that he very rarely talks about. He shared a story about her that really hit close to home for me. He mentioned how, before she passed away, she would organize these family events in an effort to create these special moments that just never quite lived up to expectations. As vague as he told the story, I still knew exactly what he meant and how she must have felt...and somehow, I felt a little better. I have been frustrated so many times about the same kind of thing. Christmas....I just wanted a special few moments with us, as a family, decorating the Christmas tree...and no matter how hard I tried, it was not destine to be a special moment. Same issue occurred when we recently went to Virginia Beach and even the Jefferson in Richmond. Fact is, you just can not force special moments...they just happen, and when they do, you better embrace them.
I had a great run in with my dad yesterday. For those who do not know my dad, he has a gift of being able to converse with anyone...engaging in a good laugh and story...it is one of the traits I am most proud of inheriting from him. We talked about how you just can not force special moments. I have experienced this first hand many times since finding out Melissa's diagnosis. No matter how big the surprise or how special the treat, I was always left disappointed with the outcome. Many of you that know may father may not know that he lost his mom at a very early age to cancer. It is something that he very rarely talks about. He shared a story about her that really hit close to home for me. He mentioned how, before she passed away, she would organize these family events in an effort to create these special moments that just never quite lived up to expectations. As vague as he told the story, I still knew exactly what he meant and how she must have felt...and somehow, I felt a little better. I have been frustrated so many times about the same kind of thing. Christmas....I just wanted a special few moments with us, as a family, decorating the Christmas tree...and no matter how hard I tried, it was not destine to be a special moment. Same issue occurred when we recently went to Virginia Beach and even the Jefferson in Richmond. Fact is, you just can not force special moments...they just happen, and when they do, you better embrace them.
4/30/2013
Has it really been only 5 months since this brain cancer thing started?
Flashback...here is a link to the very first post on this blog...went back and read it today.
http://barrsbattlebraincancer.blogspot.com/2013/01/11262012.html
It seems like a decade ago. Funny how not much has changed, as far as not knowing how this will all work out....and I am still not sure if it ever really sinks in. One thing is for sure, at that time, I had no idea what we were getting into...but looking back, we did the best would could to handle things...far better than most, though, only because of the help and support of others.
Flashback...here is a link to the very first post on this blog...went back and read it today.
http://barrsbattlebraincancer.blogspot.com/2013/01/11262012.html
It seems like a decade ago. Funny how not much has changed, as far as not knowing how this will all work out....and I am still not sure if it ever really sinks in. One thing is for sure, at that time, I had no idea what we were getting into...but looking back, we did the best would could to handle things...far better than most, though, only because of the help and support of others.
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