I would like to say hi to all my readers at the Cancer Treatment Center of India! When you blog, you never know who will follow your posts. Many have posted nice comments and I want to thank you for each one.
Heading into this weekend, I feel motivated to go out and have some fun. I have even considered taking a ride to the beach for a night or something. Melissa seems a bit more motivated, though, her sleeping medication no longer seems to be effective, so she has not rested well in days. I think a fun, exhausting day would help her. It will be another very tight budget mini-fun-trip, but when going through what we are, you just have to make time for these things to feel half-way normal for a while.
Friday, May 31, 2013
Wednesday, May 29, 2013
5/28/2013
Since mentioning the "R" word (Remission), I have noticed a very stiff decline in the number of followers of the blog, dropping off by more than 50 views a day. I just hope that is not a result of people thinking that our journey with cancer is over and that all is well now, which is not the case at all. We are happy to hear that the radiation was effective, and to hear the word "remission" did offer a glimpse into what could be a healthy future for Melissa, but she is still in treatment. I think it is a good idea, also, for people to realize that brain cancer is not something that is cured, it is something you have to try to live with. What that means is that, unlike most forms of cancer, it almost always comes back. Often, when brain cancer comes back, it returns more aggressive and faster growing as well, which leads to the grave diagnosis for most grade 3 and 4 patients. Now, I have met many people who are 10 years past where Melissa is and are still cancer free...but that is not the usual results. Even for those who have practically beat it, it maintains a presence in and over their lives, involving routine scans and related medicines indefinitely. I think for Melissa, getting past the side effects of the medicine and the lack of motivation (both due to a crazy situation and the part of the brain damaged by her tumor) will be the hardest part. Getting back to some level of activity has been challenging. We still face a very rough, hard road ahead even if the cancer never returns....a road that will require the support of our friends and family for years to come.
Please keep praying for us.
Please keep us in your thoughts.
Please keep following the blog.
Those things mean so much to us.
Please continue to support the fundraiser for her wish. This may be the last vacation our family gets for many years to come and I desperately want it to be the best vacation of our lives. Please help!
http://www.crowdrise.com/melissa-braincancer/fundraiser/charlesbarr
Please keep praying for us.
Please keep us in your thoughts.
Please keep following the blog.
Those things mean so much to us.
Please continue to support the fundraiser for her wish. This may be the last vacation our family gets for many years to come and I desperately want it to be the best vacation of our lives. Please help!
http://www.crowdrise.com/melissa-braincancer/fundraiser/charlesbarr
Tuesday, May 28, 2013
5/24/2013 - 5/27/2013 - Memorial Day Weekend
For a weekend that most spend traveling or packing up the car for a long weekend at the beach or where-ever, we managed to do much of nothing this holiday weekend. Little man went up to stay with his grandma and papa Saturday night, and though I was sure I would feel like going out, I just did not. Granted, a shoe-string budget does not leave much room for play-funds, even if I had a few extra bucks I wouldn't have used them.
What happened to us? To me? We just can not manage to have fun or really enjoy much of anything. I am so excited about our trip, but at the same time, I have reservations about if we can put the past 6 months behind us and really have a good time. I think the fact that I will not have to worry about the expenses during the trip will help. I feel bad putting gas in my car, knowing that our financial situation is on the brink of disaster, much less trying to justify "fun money". I have struggled with spending a dime on anything but a necessity...I just have to learn that holiday gifts, birthdays, really the things that help make-up a normal family life are a necessity.
Despite a couple gorgeous days, we rarely left the house this weekend. It is so hard for me to get motivated to do anything by myself. Though she needs to be up, getting out of the house, she is not remotely interested in doing anything these days. As much as I try, sleeping, eating, and smoking are all she does and all she cares to do. Nothing else seems to motivate her. She did respond slightly to my last post, getting up and milling around the house during the day time. Thing is, I just really miss my wife...they way she would smile, or burst into a mini-dance, the playfulness, the way she would get done-up to go out. I bet she has not smiled or laughed hard a handful of times since the tumor was found. Pardon my French, but the entire situation is just plain fucked up. I am pretty much at my wit's end on this...and from what I have read, I will just have to wait it out and try not to loose my mind in the process. I would attempt to get out of the house more, distract myself, or maybe get back to playing music, but finding the time will be damn near impossible.
Many people may think that now that the doctor has mentioned the "R" word, that all is well....that the worst is behind us. Though many tough times are behind us, many more lay ahead. For starters, we must find a way to rebuild our lives, our relationships, our finances....not to mention her trying to survive the after-affects of radiation, chemo, steroids, high-blood sugar, and weight-gain....and the cancer is still expected (by doctors) to eventually come back.
We watched a movie that hit close to home with us over the weekend - 50/50...it is a "must watch" comedy about dealing with cancer.
Little man had a blast this weekend. Monday, the pool opened at his grandma and papa's apartments, so he got to spend about 4 hours playing in it. Needless to say, he was worn out when he got home.
What happened to us? To me? We just can not manage to have fun or really enjoy much of anything. I am so excited about our trip, but at the same time, I have reservations about if we can put the past 6 months behind us and really have a good time. I think the fact that I will not have to worry about the expenses during the trip will help. I feel bad putting gas in my car, knowing that our financial situation is on the brink of disaster, much less trying to justify "fun money". I have struggled with spending a dime on anything but a necessity...I just have to learn that holiday gifts, birthdays, really the things that help make-up a normal family life are a necessity.
Despite a couple gorgeous days, we rarely left the house this weekend. It is so hard for me to get motivated to do anything by myself. Though she needs to be up, getting out of the house, she is not remotely interested in doing anything these days. As much as I try, sleeping, eating, and smoking are all she does and all she cares to do. Nothing else seems to motivate her. She did respond slightly to my last post, getting up and milling around the house during the day time. Thing is, I just really miss my wife...they way she would smile, or burst into a mini-dance, the playfulness, the way she would get done-up to go out. I bet she has not smiled or laughed hard a handful of times since the tumor was found. Pardon my French, but the entire situation is just plain fucked up. I am pretty much at my wit's end on this...and from what I have read, I will just have to wait it out and try not to loose my mind in the process. I would attempt to get out of the house more, distract myself, or maybe get back to playing music, but finding the time will be damn near impossible.
Many people may think that now that the doctor has mentioned the "R" word, that all is well....that the worst is behind us. Though many tough times are behind us, many more lay ahead. For starters, we must find a way to rebuild our lives, our relationships, our finances....not to mention her trying to survive the after-affects of radiation, chemo, steroids, high-blood sugar, and weight-gain....and the cancer is still expected (by doctors) to eventually come back.
We watched a movie that hit close to home with us over the weekend - 50/50...it is a "must watch" comedy about dealing with cancer.
Little man had a blast this weekend. Monday, the pool opened at his grandma and papa's apartments, so he got to spend about 4 hours playing in it. Needless to say, he was worn out when he got home.
Friday, May 24, 2013
5/23/2013
I was thinking about my post yesterday...in particular, the part about me "motivating" Melissa. I thought how her or someone else might interpret that statement with a negative tone. She didn't take it that way, but still...I think everyone who loves her would like to see her 100% back to her former self. Motivation is required for almost anyone who faces something like this, but not because she is lazy or lacks interest in fighting for her life. I want everyone in the WORLD to know that Melissa Barr is a fighter! She has endured more than anyone I have ever witnessed...needles, surgeries, scans, poisons, drugs, infections, ER's, hospitals...you name it, and this woman has endured it without loosing hope or her mind...and I am the one whining to a blog. She has a long way to go. I, and hopefully many others, will help guide and motivate her back to active living. So today, the day after perhaps the greatest update to this blog yet, I want to make it clear to Melissa, her family, my family and anyone out there reading this...
There is a hero among us....my hero...
Melissa Lynn Barr
Boom! How is THAT for motivation?
There is a hero among us....my hero...
Melissa Lynn Barr
Boom! How is THAT for motivation?
Thursday, May 23, 2013
5/22/2013 - The "R" Word...
We both sat in the doctors office waiting room for what seemed like hours. Finally, they called us back. Again, we waited for a while. Nervous energy...I found myself tapping my foot or bouncing my knee. Melissa asked, "You nervous?" I said, "nah." If we were expecting bad news then I would have been very nervous. I was nervous when she showed my the first picture of the tumor. I was very nervous during and after surgery. I was nervous yesterday....now, I am just anxious. Hell, we have lived in "bad news" for the past 6 months...if more were to come, well, it would not be a surprise...just more of the same.
The doctor finally came in...
At this point, I even had my phone turned off.
"I have reviewed your scans and they look pretty good", the Dr said. He continued, "...and I think it is not to early to mention the word 'remission'." Now, as he explained before, that does not mean that we are out of the water, but it does mean we are out in front of this thing now, and that's where you have to be to beat any cancer. Brain cancer almost certainly comes back...but when and how seriously, only time will tell.
I was sure we would both be more excited...and we were, kind of, but not like I expected. We have so much more to face, regardless of whether the tumor grows back or not. The medicines she is on are wreaking havoc on her body...all the down time has not helped either...the mountains of bills. In a way, we face an even tougher challenge just trying to get back to living again. You just put one foot in front of the other and take it "one day at a time"....it's all you can do.
I want desperately to be that "motivator" for her...her best friend usually served in that role...which helped keep me out of the dog house...but that friend now lives 2 hours away...so I will be forced into that role. I am less pushy and less effective, mainly because of my extreme sweetness and constant outpouring of affection, but I will do my best to motivate her. This has to be look treated like a second chance at life. Treating it any other way would be like giving that chance up and conceding victory to cancer.
The doctor finally came in...
At this point, I even had my phone turned off.
"I have reviewed your scans and they look pretty good", the Dr said. He continued, "...and I think it is not to early to mention the word 'remission'." Now, as he explained before, that does not mean that we are out of the water, but it does mean we are out in front of this thing now, and that's where you have to be to beat any cancer. Brain cancer almost certainly comes back...but when and how seriously, only time will tell.
I was sure we would both be more excited...and we were, kind of, but not like I expected. We have so much more to face, regardless of whether the tumor grows back or not. The medicines she is on are wreaking havoc on her body...all the down time has not helped either...the mountains of bills. In a way, we face an even tougher challenge just trying to get back to living again. You just put one foot in front of the other and take it "one day at a time"....it's all you can do.
I want desperately to be that "motivator" for her...her best friend usually served in that role...which helped keep me out of the dog house...but that friend now lives 2 hours away...so I will be forced into that role. I am less pushy and less effective, mainly because of my extreme sweetness and constant outpouring of affection, but I will do my best to motivate her. This has to be look treated like a second chance at life. Treating it any other way would be like giving that chance up and conceding victory to cancer.
Tuesday, May 21, 2013
5/20/2013 - 5/21/2013
Melissa is starting to feel much better today. She is still battling a persistent cough, but her appetite has begin to return. I found out that Livestrong has a free program at the YMCA for cancer patients and survivors. I offered to be her "workout partner", so I plan on looking into that program this week.
So far, our Fundraiser for granting Melissa's wish has fared very well. Kristi with 3 Little Birds 4 Life has worked very hard to make sure we are a success.
Check out the great story that ran in a Kentucky Newspaper!
http://www.kystandard.com/content/organization-looks-leave-cancer-birds
We are almost half way to the goal, but still need your support and help to achieve it.
Here is the link where you can help!
http://www.crowdrise.com/3littlebirds4life
So far, our Fundraiser for granting Melissa's wish has fared very well. Kristi with 3 Little Birds 4 Life has worked very hard to make sure we are a success.
Check out the great story that ran in a Kentucky Newspaper!
http://www.kystandard.com/content/organization-looks-leave-cancer-birds
We are almost half way to the goal, but still need your support and help to achieve it.
Here is the link where you can help!
http://www.crowdrise.com/3littlebirds4life
Monday, May 20, 2013
5/18/2013 & 5/19/2013
This weekend was a complete wash. The weather was rainy and Melissa did not feel well. Saturday night, we ended up going out on the town, Cancer style, with a late night run to the ER. She was running a fever and had a bad cough. She also had not eaten in 24 hours and was sick to her stomach. We headed out at 1am Sunday morning for the ER. She got spend most of Sunday at the hospital, running blood tests, lung scans, and many other tests. Long story short, she left the hospital Sunday afternoon with a few new medications.
It had been some time since our last hospital trip. Hopefully, it will be the last for a long time. I can say, though, she seemed quite content this hospital trip...insistent, even, that we go to the ER. That is when you KNOW she is not feeling good.
We have a pretty important doctors appointment Wednesday afternoon. Hopefully, it will provide Melissa with some much needed motivation to get back on her feet again. No one knows how they will handle cancer until they have it, so it is impossible for me to say that "if that was me, I would..."...but I think despite what I or anyone has or will do, it is well past time for her to get back to some level activity, no matter how tired she might feel. You just can't wait to live...you just have to get out there and do it.
It had been some time since our last hospital trip. Hopefully, it will be the last for a long time. I can say, though, she seemed quite content this hospital trip...insistent, even, that we go to the ER. That is when you KNOW she is not feeling good.
We have a pretty important doctors appointment Wednesday afternoon. Hopefully, it will provide Melissa with some much needed motivation to get back on her feet again. No one knows how they will handle cancer until they have it, so it is impossible for me to say that "if that was me, I would..."...but I think despite what I or anyone has or will do, it is well past time for her to get back to some level activity, no matter how tired she might feel. You just can't wait to live...you just have to get out there and do it.
Friday, May 17, 2013
5/17/2013
It seems my blog has some followers from afar. It is one of the amazing things about blogging...you never know who you will reach. You also do not know how you will be interpreted...but, I am careful most of the time. This started as a journal for just me. Days into it, I realized it would be a great resource for family and friends for information, and the rest is history.
Little man has been impressively good since his run in with the principle. I will have to be creative to find some affordable fun for us to get into this weekend. We are still about a month away from Melissa getting any income from disability and almost everything is due from the 15th to the 30th, so this coming stretch will be tough but something I have just grown accustomed to.
Little man has been impressively good since his run in with the principle. I will have to be creative to find some affordable fun for us to get into this weekend. We are still about a month away from Melissa getting any income from disability and almost everything is due from the 15th to the 30th, so this coming stretch will be tough but something I have just grown accustomed to.
Thursday, May 16, 2013
5/13/2013 - 5/16/2013 - Update and Steroids
So, the past couple days has been filled with much excitement, regarding the fundraiser for Melissa's wish and my little guy at school.
First, the trip! We have been very lucky so far, getting some amazing donations for Melissa's wish. So, Linda (if you are reading this)....a storm is coming lady! haha....the last week of June will be exciting!
My little guy got in trouble again, not nearly as serious, but did dawn a letter home. The Parent-Principle conference went well, though, and he rebounded with his best day yet! See, I knew he had it in him! Now I can get back to that positive reinforcement he loves so much!
Today, I wanted to share an excerpt from some reading I have been doing. This is a general run down of the steroids you hear me complaining about routinely. It explains a TON and is the root of most of the things that are dragging Melissa down right now. I have to constantly remind myself, "It's the medications". She exhibits every symptom and side effect...every one pretty severe too.
"As any primary caregiver knows by this point, Decadron (or its generic, dexamethasone) is a steroid that works well to prevent or control brain edema (swelling). When the dosage is sufficiently high, Decadron has the ability to mask symptoms, "sharpen the edges" of a patient, alleviate headaches, and possibly raise quality of life or function. Through their experience along the disease course, caregivers may have seen Decadron "rescue" a loved one from severe headaches or a new onslaught of tumor symptoms. But they have also learned that Decadron's benefits sometimes carry a price, including, among other things:
Insomnia
Increased appetite and the potential for weight gain
Personality changes (ranging from moodiness to psychosis)
Muscle loss (particularly in the thighs, which bear the patient's
weight when rising, sitting, and walking)
Bloated appearance (distended abdomen, cushingoid swelling of
the face, and sometimes a hump in the neck)
Pooling of fluid in the extremities
Potential for steroid-induced diabetes
The steroid motto all the way along, then, has tended to be "The least we can get by with, the better." This is because higher doses and long-term use multiply the effects the patient and caregiver must address. There has always been a tradeoff, or a delicate balancing act. By the time the patient enters hospice care, he or she has typically been on a number of steroid doses...up...down...all over the map, as needed. The medicine cabinet of a brain tumor patient is likely to contain vials of unused Decadron tablets of several different strengths, thanks to increases, weans, and adjustments that may have occurred over time. Up until this point, the fear of long-term effects has probably driven the goal of taking as little steroid as possible while still maintaining the status quo."
First, the trip! We have been very lucky so far, getting some amazing donations for Melissa's wish. So, Linda (if you are reading this)....a storm is coming lady! haha....the last week of June will be exciting!
My little guy got in trouble again, not nearly as serious, but did dawn a letter home. The Parent-Principle conference went well, though, and he rebounded with his best day yet! See, I knew he had it in him! Now I can get back to that positive reinforcement he loves so much!
Today, I wanted to share an excerpt from some reading I have been doing. This is a general run down of the steroids you hear me complaining about routinely. It explains a TON and is the root of most of the things that are dragging Melissa down right now. I have to constantly remind myself, "It's the medications". She exhibits every symptom and side effect...every one pretty severe too.
"As any primary caregiver knows by this point, Decadron (or its generic, dexamethasone) is a steroid that works well to prevent or control brain edema (swelling). When the dosage is sufficiently high, Decadron has the ability to mask symptoms, "sharpen the edges" of a patient, alleviate headaches, and possibly raise quality of life or function. Through their experience along the disease course, caregivers may have seen Decadron "rescue" a loved one from severe headaches or a new onslaught of tumor symptoms. But they have also learned that Decadron's benefits sometimes carry a price, including, among other things:
Insomnia
Increased appetite and the potential for weight gain
Personality changes (ranging from moodiness to psychosis)
Muscle loss (particularly in the thighs, which bear the patient's
weight when rising, sitting, and walking)
Bloated appearance (distended abdomen, cushingoid swelling of
the face, and sometimes a hump in the neck)
Pooling of fluid in the extremities
Potential for steroid-induced diabetes
The steroid motto all the way along, then, has tended to be "The least we can get by with, the better." This is because higher doses and long-term use multiply the effects the patient and caregiver must address. There has always been a tradeoff, or a delicate balancing act. By the time the patient enters hospice care, he or she has typically been on a number of steroid doses...up...down...all over the map, as needed. The medicine cabinet of a brain tumor patient is likely to contain vials of unused Decadron tablets of several different strengths, thanks to increases, weans, and adjustments that may have occurred over time. Up until this point, the fear of long-term effects has probably driven the goal of taking as little steroid as possible while still maintaining the status quo."
Monday, May 13, 2013
Wish Fundraiser Update!!!
The fundraiser for Melissa's wish is underway!
Here is the link where you can help!
http://www.crowdrise.com/3littlebirds4life
Also, feel free to contact me also! We are very excited! Her wish is something that we have never been able to afford to do and may never be able to afford to do again. Please help!
Update from Cameron and Heather Von St. James
I had an update from a fellow spouse of a surviving cancer patient. You may remember me posting an article by Cameron Von St James on the blog a few months back. (if not, no worries, here it is http://barrsbattlebraincancer.blogspot.com/2013/03/my-journey-as-cancer-caregiver-by.html).
His wife, Heather, is a very determined and driven person, who, despite being told the worst news, persevered to beat plural mesothelioma. Pretty incredible story!
Here is a video recently made with their story! Hope is a powerful weapon!
http://www.mesothelioma.com/heather/#.UZE8YqK-qzk
His wife, Heather, is a very determined and driven person, who, despite being told the worst news, persevered to beat plural mesothelioma. Pretty incredible story!
Here is a video recently made with their story! Hope is a powerful weapon!
http://www.mesothelioma.com/heather/#.UZE8YqK-qzk
5/11/2013 - 5/12/2013
My goal this weekend was to get out of the house. Midget was in need of exerting some energy. So Saturday, we got up early and grabbed breakfast at the Yankee Coffee Shop (a must-visit family-owned business that has not changed much in 30 years). After some relaxing at home, I took midget out to the park. Melissa was not feeling up for that much activity and just did sleep well.
We went to Temple Park in Prince George, VA.
This playground was just installed and was impressive. He played hard for at least 2 hours while I tried not to burn in the sun. After he was played out, we went home, cleaned up, and went out to see Iron Man 3. He really had not earned it with his recent behavior at school, but like me, Michael just needed to have some fun. It was a pretty good movie. When we left the theater, Michael said, "Oh man, it's getting dark already!?" Yep...it was almost 8pm...and a busy but fun day comes to a close.
Sunday was Mother's Day. Michael helped me pick out a nice set of ear rings for his mom. She mentioned, some months back, wanting a nice pair of simple, small hoops....yep, I remembered. She was very surprised.
In an effort to keep the fun coming, I took midget bowling. It was a better deal for 2 hours of bowling. I had no idea how physically challenging 2 hours of bowling with a 5 year old could be. Let's just say, daddy is sore. Michael was far to proud for the bumpers, refusing them every time I suggested them. He is one determined child. He did ok, even scoring a 67 one game....not far behind me.
Later, Melissa mentioned that she would love to share a picture of her new ear rings on Facebook but did not want people to think we were out spending money we did not have, especially since so many have helped us over the last couple months...and will probably help us in the coming months...it just didn't seem right. It was a good point, even though I did not spend a lot of money. On the other hand, am I really supposed to not purchase a nice gift for my sick wife on Mother's Day? I feel like we have done a great job of not spending frivolously and it is something I am proud of and fight hard to maintain. It's hard, because "retail therapy" is some effective stuff. At Christmas time, it really helped to shop for little man. Just ask Melissa about how many "comfy pants" I got her while she was in the hospital. Our lack of income, of course, makes it a little easier to not fray from our restricted spending.
I felt the need to address this because it brings up an additional struggle that cancer patients face, though I am not sure exactly what to call it. You need peoples help, both financially and emotionally, but at the same time, you have to continue to live your life; you have birthdays to celebrate, Christmas presents to buy, and affection to spread. Are you just supposed to stop doing the things you love, the things that make you YOU, because some hospital wants everything you make? Is that living? In a way, it is a matter of image...but not in the normal context. I often wonder, who did we forget to send a thank you card to? I mean, we are not preoccupied or anything, right? There have been so many who have helped us. Most I have talked to about this say that family and friends give because of love, not because of thank you cards. Gratitude, for ill people, should be understood. We are grateful for every gift...thought....prayer. I try to make sure that everyone knows, but frankly, our life is a tornado, and has been since November 27th 2012....it will remain that way for a while....we may not always choose the best or preferred way to thank those who have helped, but that does not mean we are not thankful or deserving of help. When donations came rolling in around Christmas, I did not go shopping for a new flat screen or buy new clothes, I kept my power bill paid...I paid my car payment...I purchased medications. For a while, I could not bring myself to even buy the better K-cups at the store. We are humble and becoming more humble every day...and we are certainly thankful.
We went to Temple Park in Prince George, VA.
This playground was just installed and was impressive. He played hard for at least 2 hours while I tried not to burn in the sun. After he was played out, we went home, cleaned up, and went out to see Iron Man 3. He really had not earned it with his recent behavior at school, but like me, Michael just needed to have some fun. It was a pretty good movie. When we left the theater, Michael said, "Oh man, it's getting dark already!?" Yep...it was almost 8pm...and a busy but fun day comes to a close.
Sunday was Mother's Day. Michael helped me pick out a nice set of ear rings for his mom. She mentioned, some months back, wanting a nice pair of simple, small hoops....yep, I remembered. She was very surprised.
In an effort to keep the fun coming, I took midget bowling. It was a better deal for 2 hours of bowling. I had no idea how physically challenging 2 hours of bowling with a 5 year old could be. Let's just say, daddy is sore. Michael was far to proud for the bumpers, refusing them every time I suggested them. He is one determined child. He did ok, even scoring a 67 one game....not far behind me.
Later, Melissa mentioned that she would love to share a picture of her new ear rings on Facebook but did not want people to think we were out spending money we did not have, especially since so many have helped us over the last couple months...and will probably help us in the coming months...it just didn't seem right. It was a good point, even though I did not spend a lot of money. On the other hand, am I really supposed to not purchase a nice gift for my sick wife on Mother's Day? I feel like we have done a great job of not spending frivolously and it is something I am proud of and fight hard to maintain. It's hard, because "retail therapy" is some effective stuff. At Christmas time, it really helped to shop for little man. Just ask Melissa about how many "comfy pants" I got her while she was in the hospital. Our lack of income, of course, makes it a little easier to not fray from our restricted spending.
I felt the need to address this because it brings up an additional struggle that cancer patients face, though I am not sure exactly what to call it. You need peoples help, both financially and emotionally, but at the same time, you have to continue to live your life; you have birthdays to celebrate, Christmas presents to buy, and affection to spread. Are you just supposed to stop doing the things you love, the things that make you YOU, because some hospital wants everything you make? Is that living? In a way, it is a matter of image...but not in the normal context. I often wonder, who did we forget to send a thank you card to? I mean, we are not preoccupied or anything, right? There have been so many who have helped us. Most I have talked to about this say that family and friends give because of love, not because of thank you cards. Gratitude, for ill people, should be understood. We are grateful for every gift...thought....prayer. I try to make sure that everyone knows, but frankly, our life is a tornado, and has been since November 27th 2012....it will remain that way for a while....we may not always choose the best or preferred way to thank those who have helped, but that does not mean we are not thankful or deserving of help. When donations came rolling in around Christmas, I did not go shopping for a new flat screen or buy new clothes, I kept my power bill paid...I paid my car payment...I purchased medications. For a while, I could not bring myself to even buy the better K-cups at the store. We are humble and becoming more humble every day...and we are certainly thankful.
5/9/2013 - 5/10/2013
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.
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.
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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