Treatments are still going on....and she is still pretty un-phased, though her stomach has stayed a bit upset.
Getting Melissa to treatments has been an uphill battle. Just a few weeks left. Many people have helped...don't get me wrong. It is just a pretty big chore to remember every day...and when no one is around, I miss work. Not an ideal situation, but temporary....just a few weeks left. Just have to get a tab bit more organized and plan ahead....something neither of us have ever been great at.
Little man had a project for Black History Month, that I mentions a few days back. Funny, he went from spelling "is" to having to write and read a oral report to the class...given, we kept it fairly simple....but even still, there were words he just has no idea how to read yet. So, today was the day he was to present said project. We rehearsed for hours...we worked on the project for hours upon hours. Because there were words he was not going to remember (like "lawyer" and "senator")...he memorized what to say. Well...he froze when it came time to do his project and was given a 0. I am upset....not just because we worked hard and he froze...I half expected that (honestly)....but also because he was asked to go above his grade, beyond what he has been taught ALL OF A SUDDEN and was cut no break, seemingly, at all. Granted, he was not behaving today either....if the teacher would have asked him just "Who is your project on?" and "Who was he" he would have been able to tell her....at least, he should have been. I have to also go back to the fact that this is kindergarten....and not a place for written/oral reports....and I respect the hell out of Black History Month, ok, but come on? I can flipping guarantee you no Prince George, Col. Heights, Chester, or any other more ethnically balanced school system would have kindergartners being asked to accomplish such a task for Black History Month.
Thursday, February 28, 2013
Wednesday, February 27, 2013
2/26/2013
Lately, all that comes in the mail are bills. Mail time, from most, is not the most fun part of the day. Today, it was a bit better. After checking the mail, finding bills, I chocked it up to another bad mail day...then there is a knock on the door...."FedEx". I was not expecting a package. I always let Melissa open the packages. When she did, she was pleasantly surprised to find some very kind gifts and a substantial donation from the Matthew Renk Foundation (http://matthewrenkfoundation.org/). I had contacted them, among many other organizations, for help with our coming rent and power bill payments. When I initially emailed them, I gave them our story, links to the blog and fundraiser, and asked for any help we were eligible for. Mrs. Renk, Matthew's mom, replied simply "We would love to help!". I replied offering any of my info she might need...but since, I had forgotten about it. They helped us without asking probing questions, complicated applications, and or any helps....just pure help. They are the first organization, among the hundreds I have reached out to, to extend real help...no questions asked. It was nice to see Melissa cry for a good reason this time. I will wear my "Think GREY" bracelet every day....and always thing about Matthew and his fight.
Tuesday, February 26, 2013
2/25/2013
Rough Monday. None of us felt like getting out of bed to start the week...including the little man. I literally dressed him as he slept. I forgot all about a coworker being out today in the office...oops. Typical Monday stuff....haha.
I have received several touching messages from friends and family, of course, but also from several complete strangers, frankly. Here are a few worth mentioning...
First was nice fellow who commented on 2/15/2013's post. He and his wife are a little younger than us but have faced very similar health issues, if not, in an even more challenging crisis. He found my blog through Twitter. Though I tend to ramble on my blog, somehow, my blog seemed to help him some. I am so glad my blog could help. Not sure exactly what prompted me to start my blog, but since, I have found it serves SO many purposes. It is my 'confidant', Melissa News Blog, a record of our story, and a resource for fellow cancer survivors and patients. I am proud of this blog. Somehow, it really seems to help...help me, others, family, friends...it helps people. Though sometimes I may regret my inherited gift to burst into an occasional tangent, it is what led me to blogging and what gives me the power to engulf myself in writing....it makes me feel bigger than just some guy who's wife has brain cancer.
The second message was from a Twitter follower and Redskins fan. I was shocked when, in response to my post about the fundraiser, that a complete stranger would go out of his way to message me, get my address, and send me a small note of inspiration and a donation to help us. Redskins fans in general have been incredible supportive...they always RT my posts about the fundraiser and offer kind words....but this guy went above and beyond. It is not that he sent some amazing letter or some huge donation, it was that he took the time to help a stranger. I think if more people made a point to do decent things like this, the world just would be a better place.
I have received several touching messages from friends and family, of course, but also from several complete strangers, frankly. Here are a few worth mentioning...
First was nice fellow who commented on 2/15/2013's post. He and his wife are a little younger than us but have faced very similar health issues, if not, in an even more challenging crisis. He found my blog through Twitter. Though I tend to ramble on my blog, somehow, my blog seemed to help him some. I am so glad my blog could help. Not sure exactly what prompted me to start my blog, but since, I have found it serves SO many purposes. It is my 'confidant', Melissa News Blog, a record of our story, and a resource for fellow cancer survivors and patients. I am proud of this blog. Somehow, it really seems to help...help me, others, family, friends...it helps people. Though sometimes I may regret my inherited gift to burst into an occasional tangent, it is what led me to blogging and what gives me the power to engulf myself in writing....it makes me feel bigger than just some guy who's wife has brain cancer.
The second message was from a Twitter follower and Redskins fan. I was shocked when, in response to my post about the fundraiser, that a complete stranger would go out of his way to message me, get my address, and send me a small note of inspiration and a donation to help us. Redskins fans in general have been incredible supportive...they always RT my posts about the fundraiser and offer kind words....but this guy went above and beyond. It is not that he sent some amazing letter or some huge donation, it was that he took the time to help a stranger. I think if more people made a point to do decent things like this, the world just would be a better place.
Monday, February 25, 2013
2/22/2013 & 2/23/2013 &2/24/2013
The weekend is finally here, and so ends the the first week of treatments. Nausea is still an issue, but she has found a few coping tools...aka, Luigi's Frozen Lemon Ices. Funny thing, she really does not normally like them, but the lemon helps somehow.
Little man had a super weekend, filled with games, movies, GameStop, and even chocolate cake. Yes, I tend to spoil him some...bribe even....but we had a nice weekend, so it paid off.
Little man a written project for Black History month, that he will be required to orally present....KINDERGARTEN. Hello? Funny, but so far they are barely writing sentences...spelling words are only 4-5 letters at the most....I mean, is it just time for these kind of projects or are they reaching? I think reaching, but we will do our best to get him ready.
Worked around the house some this weekend....not quite my fancy, but somebody has to do it. Worked a few hours....looked as if someone who knows how to clean worked for 10 minutes. Uphill battle on the best of days....
Played music Sunday....finally. Got to get back to that...time is limited but just have to make time for it. "Make time"....if only I had that recipe.
Little man had a super weekend, filled with games, movies, GameStop, and even chocolate cake. Yes, I tend to spoil him some...bribe even....but we had a nice weekend, so it paid off.
Little man a written project for Black History month, that he will be required to orally present....KINDERGARTEN. Hello? Funny, but so far they are barely writing sentences...spelling words are only 4-5 letters at the most....I mean, is it just time for these kind of projects or are they reaching? I think reaching, but we will do our best to get him ready.
Worked around the house some this weekend....not quite my fancy, but somebody has to do it. Worked a few hours....looked as if someone who knows how to clean worked for 10 minutes. Uphill battle on the best of days....
Played music Sunday....finally. Got to get back to that...time is limited but just have to make time for it. "Make time"....if only I had that recipe.
Friday, February 22, 2013
2/19/2013
"Living with Cancer"....huh, maybe if you could see the future. Honestly, even for those only close to anyone with Cancer, your life changes. From my standpoint, the spouse of a cancer fighter, it is hard to "live"...have a full, productive, and enjoyable time.
First treatment....no problem! She said it was quick, though the mask hurts some...I am guessing they all do.
First treatment....no problem! She said it was quick, though the mask hurts some...I am guessing they all do.
2/21/2013
It has been a long week...again.
Melissa is still rocking out these treatments, though, the nausea is still there...it was kind of rough after pizza for dinner.
Little man rocked out his spelling words tonight. There were only 5 very easy words, with "HOW" being the one he was hung on. He can spell it in his sleep now. He struggles with sentences, but he wants to be able to read the writing on video games so bad, he is trying hard. haha...
I have to say for the record, Melissa is the least deserving person I know to have to deal with brain cancer. Cancer don't discriminate though.
Melissa is still rocking out these treatments, though, the nausea is still there...it was kind of rough after pizza for dinner.
Little man rocked out his spelling words tonight. There were only 5 very easy words, with "HOW" being the one he was hung on. He can spell it in his sleep now. He struggles with sentences, but he wants to be able to read the writing on video games so bad, he is trying hard. haha...
I have to say for the record, Melissa is the least deserving person I know to have to deal with brain cancer. Cancer don't discriminate though.
2/20/2013
Melissa has been pretty tough through her treatments so far. Little nausea but that is it.
Thanks for all that have given to the fundraiser....any money raised is a success, but we are well underway and hope to reach close to our goal thanks to so many great people. Keep sharing the link! It is working!
Thanks for all that have given to the fundraiser....any money raised is a success, but we are well underway and hope to reach close to our goal thanks to so many great people. Keep sharing the link! It is working!
Tuesday, February 19, 2013
2/18/2013
Monday, Funday? Little man has a fun day at the YMCA. School was out for President's Day playing games and watching movies at the YMCA. They run the in-school after-school program he attends. He told me today that a little girl in his class thought he smelled so good she wanted to take him home. Oh my...I always planned on passing down my obsession with smelling good, but I had no idea it would work that much better for him then it did for me. Haha....needless to say, he told her "Ewww..."
Melissa did not have radiation today...they just did some imaging. She did complain that the mask they use was very, very uncomfortable...they best fix that. Radiation will start tomorrow (Tuesday), so we hear. Then she will start her chemo pill, Temodar, at bedtime, for the next 6 weeks (as radiation continues).
I researched another therapy using specifically designed and tailored amino-acids and immune cells to attack brain cancer, which have no adverse affects on healthy cells....this is offered in Molecular Oncology (or, at least that is the type of health science researching this). There have been many successful trials involving inoperable brain tumors. Unfortunately, each trial is tailored to a specific mutation type....none of which are the type Melissa is dealing with. I did talk to the UVA doctor who was involved with these trials, who said he really felt radiation and this chemo pill would be our best shot....even the other therapies are not cures. That is part of what is wrong with medicine. Besides astronomical charges, research money is unevenly divided and used to search for cures, but when treatments (or care that only prolongs life or improves low odds) are found, the hunt for the cure becomes a business for selling treatments. In an honest world, that profit should filter straight back into finding the cure. I am sure some of it does, but lets face it, if a business can sell you millions in care versus thousands in cures, what do you think they will do? I do not want to come off "angry with the system"...we have good insurance and great doctors doing all they can do...but beyond them lies problems.
Melissa did not have radiation today...they just did some imaging. She did complain that the mask they use was very, very uncomfortable...they best fix that. Radiation will start tomorrow (Tuesday), so we hear. Then she will start her chemo pill, Temodar, at bedtime, for the next 6 weeks (as radiation continues).
I researched another therapy using specifically designed and tailored amino-acids and immune cells to attack brain cancer, which have no adverse affects on healthy cells....this is offered in Molecular Oncology (or, at least that is the type of health science researching this). There have been many successful trials involving inoperable brain tumors. Unfortunately, each trial is tailored to a specific mutation type....none of which are the type Melissa is dealing with. I did talk to the UVA doctor who was involved with these trials, who said he really felt radiation and this chemo pill would be our best shot....even the other therapies are not cures. That is part of what is wrong with medicine. Besides astronomical charges, research money is unevenly divided and used to search for cures, but when treatments (or care that only prolongs life or improves low odds) are found, the hunt for the cure becomes a business for selling treatments. In an honest world, that profit should filter straight back into finding the cure. I am sure some of it does, but lets face it, if a business can sell you millions in care versus thousands in cures, what do you think they will do? I do not want to come off "angry with the system"...we have good insurance and great doctors doing all they can do...but beyond them lies problems.
Monday, February 18, 2013
2/16/2013 & 2/17/2013
Special thanks to the gentleman (and lady) at Parham's Service Center for the kind card and donation! Those guys (and gal) are just great people and I am proud to tell people I used to work there.
Explored with little man a little Saturday morning. We went to Stoney Point Fashion Mall....probably about the worst day for it too, as it is an outdoor mall and it was cold and a little snowy. This trip was spawned through a conversation between me and midget...he asked me "What are those steps called that move?" I answered, "An escalator." He replied, "Yes...an escalator. Daddy, I want to go to an escalator." So, we took an adventure drive to see a few escalators. We did manage to find a sweet deal on a Spiderman shirt as well...so it was not the most unproductive day.
Sunday, my goal was to lay around the house, but midget was cantankerous so we took a country drive. Besides a little house cleaning, I got little done...on purpose. haha....
A good friend and ex-coworker of Melissa dropped off some goodies to help with dinner this week. Less I have to worry about....and yummy stuff to.
Tomorrow....treatment begins!
Explored with little man a little Saturday morning. We went to Stoney Point Fashion Mall....probably about the worst day for it too, as it is an outdoor mall and it was cold and a little snowy. This trip was spawned through a conversation between me and midget...he asked me "What are those steps called that move?" I answered, "An escalator." He replied, "Yes...an escalator. Daddy, I want to go to an escalator." So, we took an adventure drive to see a few escalators. We did manage to find a sweet deal on a Spiderman shirt as well...so it was not the most unproductive day.
Sunday, my goal was to lay around the house, but midget was cantankerous so we took a country drive. Besides a little house cleaning, I got little done...on purpose. haha....
A good friend and ex-coworker of Melissa dropped off some goodies to help with dinner this week. Less I have to worry about....and yummy stuff to.
Tomorrow....treatment begins!
Friday, February 15, 2013
2/15/2013
(Soapbox WARNING)
Optimism....something that I hope is as strong as so many have suggested. Hard, though, at times, to focus directly on it without feeling like you are deceiving yourself. When so many things have bombarded your life, you began to question things....perhaps not religiously, but more cosmically. Like luck or karma...ask, why? You want to be prepared...realistic...which is what doctors feed you. No real optimism from doctors..."just the facts m-am"....if you plan on being optimistic, best to not ponder much of what the doctors say....again, another very hard thing to avoid. They are the experts, right? Jeez...Word to the wise, "stay strong" or "live strong" feels better to hear than "stay optimistic"....me and Melissa are beyond optimistic....in a way, we neglect to even fathom the pessimistic versions of the outcome of all this brain cancer crap. With treatment looming...yet another phase in the many horrible phases of cancer...it is on my mind. If you could hear an audio clip of my mind at work, it would sound like "get out of bed...brain cancer....stretch...brain cancer....shower...brain cancer....get dressed...brain cancer....make coffee...brain cancer...." and on and on...you get my point. I have to turn the radio up when I drive alone to try to not think about things....I tell ya....not fun.
Damn I am glad it is Friday.
2/14/2013
We had a nice Valentines. I had to work, but after we did diner at Longstreet's and got Melissa a Kindle. My Aunt had sent a Melissa a gift with specific instructions to spend it on herself...hair, nails, etc...but since the surgery, her nails are sensitive and her hair, well, may fall out, so she went techie instead. So, those wanting to just send her a little something, Amazon gift cards are sweet.
TV was chock full of low-intelligence TV to DVR....then Greys....one kinda of girly show I dig...though, hospital dramas are just not the same anymore after you live a few.
Please keep sharing the fundraiser on GiveForward...tell friends "just Google 'Barr's Battle Brain Cancer'".
I have found many, many organization across the country that lend help to cancer patients...problem is, there are so many to contact...so, one way you could help is look up some resources...if they have contact emails, contact them...tell them our story...share this blog...have them email you or me with any help we are eligible for. The fact of the matter is, our medical bills and her not working really will do some damage to us financially....and there is no way I can expect my close family and friends to bare the burden with me....so let's all see what and who is out there to help. Good hunting!
TV was chock full of low-intelligence TV to DVR....then Greys....one kinda of girly show I dig...though, hospital dramas are just not the same anymore after you live a few.
Please keep sharing the fundraiser on GiveForward...tell friends "just Google 'Barr's Battle Brain Cancer'".
I have found many, many organization across the country that lend help to cancer patients...problem is, there are so many to contact...so, one way you could help is look up some resources...if they have contact emails, contact them...tell them our story...share this blog...have them email you or me with any help we are eligible for. The fact of the matter is, our medical bills and her not working really will do some damage to us financially....and there is no way I can expect my close family and friends to bare the burden with me....so let's all see what and who is out there to help. Good hunting!
Thursday, February 14, 2013
2/13/2013
Little man has not been the best at school lately. When I picked him up from school today, I could just tell he had a rough day. He was getting his coat and backpack, I saw a "Communication Sheet" laying where he was doing his homework. As I approached it, I saw writing all over it, red marker, and not-so-smiley faces everywhere....good thing for little man, as I got closer, his after-school teacher snatched it up and said "Oh, that is not his!" Thank God....he did not have the best marks, but obviously, not the worst either. haha....
Midget is feeling better now....and so far, so good with both of us.
Melissa has not slept well. Even with new stronger medication, she can not sleep at night. She can nap like crazy, it is that sleep thing that eludes her. I think she will call the doctor tomorrow to see what else she can do or take to help. Besides sleep, she is having the best health lately she has had in 2 months. Hurrah!
Midget is feeling better now....and so far, so good with both of us.
Melissa has not slept well. Even with new stronger medication, she can not sleep at night. She can nap like crazy, it is that sleep thing that eludes her. I think she will call the doctor tomorrow to see what else she can do or take to help. Besides sleep, she is having the best health lately she has had in 2 months. Hurrah!
Wednesday, February 13, 2013
2/12/2013
Well, today we had our first radiation appointment. We talked to the radiation oncologist about side effects, the treatment experience, and all the need-to-know info. She got to see the table she will take her treatments on and had the mesh mask made for positioning. I was shocked that doctors really do not rely on current imaging for targeting...well, they have images from a month ago, most before surgery. I was glad we went to UVA and got our own MRI for them to use...made me feel WAY better about the random ass radiation blasting into my love's brain! Jeez. Looks like treatments all kick off Monday! YEAH! Now we just have to figure out how to driver her to and from Midlothian (25m away) Monday-Friday for the next 6 weeks...but we have no choice.
After our radiation appointment, we went over to finish up the post-op appointments with Dr. Geckle, Melissa's fancy brain surgeon. Today, Melissa noticed the alligator shoes. She also noticed how the Dr talked about her treatment, current condition, and seriousness of things. He eluded to how we have "great neurological health" right now and that the goal was to preserve that for as long as possible. "...as long as possible"...man, the times after these "great neurological health" days scare the living shit out of me.
Melissa and I rarely talk about what could come. I mean, I know and she has mentioned she it not interested in parting this world anytime soon and that she will fight with all she has....I knew that. I thing deep down, I knew that when I fell in love and married her. She is a fighter.
Yesterday, a Twitter page started demanding cures for cancer as me, "Why do I demand a cure?" Well, with brain cancer, you can see the wall...I mean, you can see where doctors legitimate training stops and the guessing starts. You can see that doctors just do not have the studies, research, or funding to do these in regards to Brain Cancer. Brain Cancer is, perhaps, one of the most scientifically neglected cancers, research wise. It is easy to raise funds for any illness that attacks kids or breast cancer, but brain cancer is just not as catchy. I think once we get through this, I may work on raising awareness and funding for brain cancer research.
Tuesday, February 12, 2013
2/11/2013
Valentines is quickly approaching and I have no plan, besides a bottle of sweet pink bubbly....probably not the best thing to admit to the blog, but I am sure I will scramble and come up with a great plan. Budget is tight...but I have always had that problem going into this holiday. I was lucky to have a great friend of the family (who runs a nice florist shop in Hopewell) offer to donate some roses....but, she knows about them already.
Tomorrow is Melissa's first radiation appointment (dry run, though). Tomorrows post should have more details on her schedule and all. The logistics of getting to treatment pose a real problem, but I will just have to do what I have to do to help my lady get better.
Looks like little man will be headed back to class tomorrow. I made sure to send his doctors note and keep a copy this time. Petersburg Schools....jeez.
Tomorrow is Melissa's first radiation appointment (dry run, though). Tomorrows post should have more details on her schedule and all. The logistics of getting to treatment pose a real problem, but I will just have to do what I have to do to help my lady get better.
Looks like little man will be headed back to class tomorrow. I made sure to send his doctors note and keep a copy this time. Petersburg Schools....jeez.
2/10/2013
Little man was still very sick today....though me and Melissa are still in the clear.
I decided make a Sams Club trip to spot shop for good deals. Finished groceries at Foodlion. Shame how expensive groceries are these days.
Rented midget some movies to keep him relaxing and away from my TV time.
The Walking Dead came on tonight....not a favorite of Melissa's, but I am addicted. I have to say, though, tonight's episode was not quite all I imagined.
I decided make a Sams Club trip to spot shop for good deals. Finished groceries at Foodlion. Shame how expensive groceries are these days.
Rented midget some movies to keep him relaxing and away from my TV time.
The Walking Dead came on tonight....not a favorite of Melissa's, but I am addicted. I have to say, though, tonight's episode was not quite all I imagined.
Saturday, February 9, 2013
2/9/2013
Little man seems to be feeling a little better. He is still not eating much, but drinking down the fluids. Me and Melissa are still clear so far, but I am sure one of us, if not both, are just on borrowed time.
I have a whole lot of nothing planned for today. Heal, recovery, containing contamination....all the plan I have for today.
Pretty out, though....may need to go get me some fresh air (and beer) tonight. Haha....it has been too long. Don't want to make is sound like I drink a lot....I had my fun over the years....may drink 2 or 3 beers every 2 or 3 months now....but I could desperately use a change of scenery tonight...so I may slip out with a friend for a bit tonight....recharge the battery, so to speak. I have been thinking about playing music again. The logistics of trying to practice will be difficult to manage, but I feel like, besides this blog, I need something more to occupy my mind and give me some sense of accomplishment....music can do these and make me look cool while it does it. haha....I have found that having a gig (of sorts) forcibly will motivate me....so maybe I start planning a physical fundraiser today. Hmmm....
As the day went on, little man burned out quickly. He pretty much never made it off the sofa...all day. Poor thing. He has been so careful to cover his face, hand sanitize and use his own trash can and such....so cute really...but I feel for him. So far, as of Saturday night, the adults in the house are symptom free.
I have a whole lot of nothing planned for today. Heal, recovery, containing contamination....all the plan I have for today.
Pretty out, though....may need to go get me some fresh air (and beer) tonight. Haha....it has been too long. Don't want to make is sound like I drink a lot....I had my fun over the years....may drink 2 or 3 beers every 2 or 3 months now....but I could desperately use a change of scenery tonight...so I may slip out with a friend for a bit tonight....recharge the battery, so to speak. I have been thinking about playing music again. The logistics of trying to practice will be difficult to manage, but I feel like, besides this blog, I need something more to occupy my mind and give me some sense of accomplishment....music can do these and make me look cool while it does it. haha....I have found that having a gig (of sorts) forcibly will motivate me....so maybe I start planning a physical fundraiser today. Hmmm....
As the day went on, little man burned out quickly. He pretty much never made it off the sofa...all day. Poor thing. He has been so careful to cover his face, hand sanitize and use his own trash can and such....so cute really...but I feel for him. So far, as of Saturday night, the adults in the house are symptom free.
Friday, February 8, 2013
2/8/2013
Forgot to mention that little man came home sick from school yesterday. He was running a fever, had a soar throat, and was very sensitive to bright light. Of course, I am paranoid about any illness these days. He has a doctors appointment this afternoon. I better get on the phone and call every person in his school's office to be sure they do not send the truancy officer. Jeez....feel like a criminal for letting my kid stay home sick and miss time when his mommy was having brain surgery.
Turned out to be the Flu. Though the timing is not the worst for the Flu to be in my house, it is still not good. Radiation and Chemo should be starting in less than two weeks, so we better be past all this before that starts. Needless to say, hand sanitizer, Lysol, Clorox wipes, and masks are being used obsessively.
Please keep sharing the link to the fundraiser, which you can keep close tabs on right here on the blog sight as well (top right side for the screen). I can not thank everyone enough. Long road ahead, though...jeez.
Speaking of thanks....I received a kind and short letter from a cousin I barely know in NC, that included a kind donation. Makes me wish I visited those family in NC more....it is never too late.
One thing I can tell you, you have no idea how great your family and friends are until you really need them. So next time your bitching about going to that Family Reunion in BFE somewhere or supporting your buddy's band...go, because one day you may need them, they may need you...family and good friends are wonderful in good times and absolutely invaluable if you ever find yourself staring into your worst fears.
Turned out to be the Flu. Though the timing is not the worst for the Flu to be in my house, it is still not good. Radiation and Chemo should be starting in less than two weeks, so we better be past all this before that starts. Needless to say, hand sanitizer, Lysol, Clorox wipes, and masks are being used obsessively.
Please keep sharing the link to the fundraiser, which you can keep close tabs on right here on the blog sight as well (top right side for the screen). I can not thank everyone enough. Long road ahead, though...jeez.
Speaking of thanks....I received a kind and short letter from a cousin I barely know in NC, that included a kind donation. Makes me wish I visited those family in NC more....it is never too late.
One thing I can tell you, you have no idea how great your family and friends are until you really need them. So next time your bitching about going to that Family Reunion in BFE somewhere or supporting your buddy's band...go, because one day you may need them, they may need you...family and good friends are wonderful in good times and absolutely invaluable if you ever find yourself staring into your worst fears.
Thursday, February 7, 2013
2/7/2013
The fundraiser crested $1,000 today....with a goal of $15,000, it leaves a ways to go, but a great start. Have to thank all who have given, both to the fundraiser or in the form of checks. I doubt anyone realized those gifts helped us keep our car this month...keep our house....keep our cable...lights....pay copays. I make sure every dollar is appropriated right. So far, so good...we have wonderful friends and family...shame it takes Cancer to figure just how great they are....but if anything good has come from all this, it is the fact that we now know how important and kindhearted each friend and family member can be when duty calls.
As I was writing above I realized that we never have sent Thank You Notes out....I made this comment to one friend last week who said "Thank You!?? People know your thak
Our first oncologist appointment was today. Things went well. Our doctor's suggested treatment mirrored that of UVA. It is as about as aggressive as we can get. We will find out when it all starts this Tuesday. Melissa is a soldier and is coming at this thing full speed....pretty inspiring, if you ask me.
So, for those who want details....here ya go. Radiation will be done Monday through Friday for 30 minutes a day for 6 weeks. The Chemo will be in the form of a pill (Temodar, to be specific) which will be taken daily for 42 days (during radiation) and then 5 days a month (following a short break post-radiation) for the next year. Not sure what will follow...but they talk like we have one shot at the radiation. That may not be the case, but we will see. Everything depends on how it responds.
After 2+ months of dealing with this tumor, I can tell you, you see "the wall", so to speak, in the terms of what doctors know about how to treat these things. Even the chemo pill we are going to try has little finished studies to go on....after our luck so far, I am not crazy about guessing or "rolling the dice"...don't play lotto anymore....haha....but it is the best possible solution out there, so what can you do but try and hope.
As I was writing above I realized that we never have sent Thank You Notes out....I made this comment to one friend last week who said "Thank You!?? People know your thak
Our first oncologist appointment was today. Things went well. Our doctor's suggested treatment mirrored that of UVA. It is as about as aggressive as we can get. We will find out when it all starts this Tuesday. Melissa is a soldier and is coming at this thing full speed....pretty inspiring, if you ask me.
So, for those who want details....here ya go. Radiation will be done Monday through Friday for 30 minutes a day for 6 weeks. The Chemo will be in the form of a pill (Temodar, to be specific) which will be taken daily for 42 days (during radiation) and then 5 days a month (following a short break post-radiation) for the next year. Not sure what will follow...but they talk like we have one shot at the radiation. That may not be the case, but we will see. Everything depends on how it responds.
After 2+ months of dealing with this tumor, I can tell you, you see "the wall", so to speak, in the terms of what doctors know about how to treat these things. Even the chemo pill we are going to try has little finished studies to go on....after our luck so far, I am not crazy about guessing or "rolling the dice"...don't play lotto anymore....haha....but it is the best possible solution out there, so what can you do but try and hope.
2/6/2013
Melissa is getting back so some normalcy...which is nice. I mean, with radiation and chemo around the corner, it will be nice to have her back and strong for a week or so.
One thing I forgot to mention is that we did find out more details about her pathology results at UVA. It seems she does have a mixed glioma formed of a majority of astrocytic cells....I know, latin....so we will put that in the context our doctor used....some tumors are vanilla, some are chocolate...hers is a swirl.
Tomorrow we go to meet our oncologist at CJW. Hope all goes well with what he wants and what UVA suggested....but my guess is he will be willing to do whatever we want...within reason, of course.
One thing I forgot to mention is that we did find out more details about her pathology results at UVA. It seems she does have a mixed glioma formed of a majority of astrocytic cells....I know, latin....so we will put that in the context our doctor used....some tumors are vanilla, some are chocolate...hers is a swirl.
Tomorrow we go to meet our oncologist at CJW. Hope all goes well with what he wants and what UVA suggested....but my guess is he will be willing to do whatever we want...within reason, of course.
Wednesday, February 6, 2013
$1 DRIVE!!! Donate!!!
To help our fundraiser efforts, for the next three months we will have a $1 DRIVE!
In the next three months...
1. Donates at least $1 to our fundraiser.
AND
2. Shares the link to our fundraiser on Facebook or Twitter.
One person will be randomly selected for a gift from our family.
Please help if you can! Brain Cancer Sucks!
2/5/2013
We had a nice trip to UVA. The Emily Couric Clinical Cancer Center was state-of-the-art and very, very nice. Everyone there was incredible and the doctors were more thorough than I have witnessed. Our wait was minimal. With all that said, I am still a little let down....I suppose somewhere in the back of my mind I had convinced myself they would have something newer...better....a cure, of sorts. There is no cure, ever, for brain cancer. Yes, if it responds well to treatments, you can live a long while with brain cancer, but it seldom ever goes away or is cured, and often, comes back faster growing and more invasive each time. This is something you just have to live with. I suppose I let my hopes get ahead of reality....brain cancer is now part of my family...something we will deal with as long as we can. They did shed some light on a few new things...for one, the phantom smells she has had a few times were most likely seizures. The one short dizzy spell she had was also a seizure...so they upped her anti-seizure medications to prevent any larger seizures. They also informed us of the Virginia law that requires a person be 6 months seizure-free to legally drive...so it will be at least 6 months before she can drive again (Booo!). They also said that our neurosurgeon did an excellent job removing what he could without doing any damage. The treatment they suggested seemed a touch more aggressive too...though, we do not get the full story from our local oncologist until tomorrow...so it could turn out to be the same treatment plan. Long story short, we did not leave our trip empty handed. I hope to have UVA oversee her neurological care and treatments, but keep our local doctors to administer treatment...I know this is a lot to ask, but I hope they will be cordial and cooperative. We will find out tomorrow.
After our appointment, I took her for a special meal at the Thai 99 in Charlottesville. This is normally a meal that she enjoys and I, well, pick through and eat what I can stand to eat....today, though, I chose very wisely. So, if you are a meat & tators guy or gal that finds yourself in a Thai restaurant, here is what you need to order....Pad See Ew - wide noodle, soy sauce, broccoli, and whichever meat/tofu you choose. It was a HOME RUN! It was so good...comfort food from the far east.
One friend was concerned that this UVA trip delayed treatment...so I wanted everyone to know that we were able to get into UVA before our local appointments, so no delay occurred....just exploring every option to be sure we are getting the best care possible for my baby.
On a different note, Melissa loves her knitted hats. I think I may have (inadvertently) joked about them when I posted about the shirt I received from Lorenzo Alexander of the Redskins. She loves those hats and uses them daily. They were sent to brighten her day and they do just that. I did not mean to poke fun at them. I couldn't knit a stitch if my life depended upon it.
After our appointment, I took her for a special meal at the Thai 99 in Charlottesville. This is normally a meal that she enjoys and I, well, pick through and eat what I can stand to eat....today, though, I chose very wisely. So, if you are a meat & tators guy or gal that finds yourself in a Thai restaurant, here is what you need to order....Pad See Ew - wide noodle, soy sauce, broccoli, and whichever meat/tofu you choose. It was a HOME RUN! It was so good...comfort food from the far east.
One friend was concerned that this UVA trip delayed treatment...so I wanted everyone to know that we were able to get into UVA before our local appointments, so no delay occurred....just exploring every option to be sure we are getting the best care possible for my baby.
On a different note, Melissa loves her knitted hats. I think I may have (inadvertently) joked about them when I posted about the shirt I received from Lorenzo Alexander of the Redskins. She loves those hats and uses them daily. They were sent to brighten her day and they do just that. I did not mean to poke fun at them. I couldn't knit a stitch if my life depended upon it.
Monday, February 4, 2013
2/4/2013
Today we travel to UVA for the imaging...tomorrow our consult. I hope our records arrive in time....had to sweet talk a nice lady at our office for any chance of that happening on such short notice.
Here is where we are going...
The Emily Couric Clinical Cancer Center
http://uvahealth.com/directions-locations/clinics/emily-couric-clinical-cancer-center
This is who are going to see...
http://uvahealth.com/doctors/physicians/273
I think you guys know I love my wife....but there is another....Beyonce. haha...pretty impressive halftime show, though, it did seem to go on and on....I really was not listening or watching that clock though. haha....
Congrats to the Ravens and Ravens Nation! Well deserved victory.
I may not update again until Wednesday. Wish us luck!!! Thanks!
Here is where we are going...
The Emily Couric Clinical Cancer Center
http://uvahealth.com/directions-locations/clinics/emily-couric-clinical-cancer-center
This is who are going to see...
http://uvahealth.com/doctors/physicians/273
I think you guys know I love my wife....but there is another....Beyonce. haha...pretty impressive halftime show, though, it did seem to go on and on....I really was not listening or watching that clock though. haha....
Congrats to the Ravens and Ravens Nation! Well deserved victory.
I may not update again until Wednesday. Wish us luck!!! Thanks!
2/3/2013
Superbowl Sunday. Next year this is liable to be a Redskins game...but this year, Ravens and 49ers. I have a few relatives who are Ravens fans, so I guess I will root for the Ravens. Kind of the last year I would expect them to be this good, with some many changes coming to that defense.
Melissa had the pick line removed. It was less than a desirable thing to watch, so I hid my eyes, but it was quick and not as painful as either of us expected. Now, no medical leash! Yeah! No more $71 a day co-pays! Yeah! On to the treatment phase. Made our reservations for the Red Roof Inn in Charlottesville for Monday night. I doubt we will find out much, besides finally getting some post-op images, but perhaps we come out of it with a better feeling. Cross your toes!
Lasagna tonight, compliments of mom...it was yummy!
Melissa had the pick line removed. It was less than a desirable thing to watch, so I hid my eyes, but it was quick and not as painful as either of us expected. Now, no medical leash! Yeah! No more $71 a day co-pays! Yeah! On to the treatment phase. Made our reservations for the Red Roof Inn in Charlottesville for Monday night. I doubt we will find out much, besides finally getting some post-op images, but perhaps we come out of it with a better feeling. Cross your toes!
Lasagna tonight, compliments of mom...it was yummy!
2/2/2013
My cousin and his wife had their baby shower today at Hiram Haines in Old Towne today. Great place for a small event...run by nice people. Best coffee in Old Towne (get the French press, then use that energy to walk around Old Towne). We had a good time...but after that and a little shopping, Melissa was pretty worn out.
Tomorrow the pick-line comes out. Oh yeah....
Tomorrow the pick-line comes out. Oh yeah....
Friday, February 1, 2013
2/1/2013
So, I made appointments for UVA for Monday night and Tuesday! They are the brain tumor treatment center in VA. the Emily Couric Clinical Cancer Center. Had work some magic to make it happen, but ya know, I am just good like that.
Had to convince Melissa we had to talk to them...I think she is still leery of doing treatment so far away. I promised her I would do anything we needed to do to make the best course of treatment happen...I mean, no inconvenience will matter if a year from now we have regrets...so we will see how she takes to them.
Had to convince Melissa we had to talk to them...I think she is still leery of doing treatment so far away. I promised her I would do anything we needed to do to make the best course of treatment happen...I mean, no inconvenience will matter if a year from now we have regrets...so we will see how she takes to them.
1/31/2013
Like most anyone who has fallen prey to a horrible disease or medical condition, you research the living shemcka out it...yesterday, I focused on finding a facility with the best imaging equipment and a neuro-oncologist....with top 5 survival rate. UVA had it all....brand new facility, specialized in brain tumors, best imaging, and treat the complete patient. They do extensive imaging during treatment to assure it is working....no blind poison treatments. I have noticed you can almost follow the money to find the best treatment for grave illnesses....the newest place, best equipment, best doctors, best nurses...etc. Today, I make our appointment. Regardless of where we choose to do treatment, we will have a fair amount of driving ahead of us. Melissa was very concerned about the logistics...and how that would effect little man. If we plan right....I think we could drive up early, come home in time to get him from school every day, if need be. The alternative, if we were to choose the wrong place, could be well more catastrophic than a whacked out schedule for a couple months.
Please continue to share the fundraiser page, as an easy way to contribute. There is also a widget for it in the top right corner of this blog. I plan on creating a few flyers and cards today to help reach out for support too. Thanks to the many, many people who have helped already.
Please continue to share the fundraiser page, as an easy way to contribute. There is also a widget for it in the top right corner of this blog. I plan on creating a few flyers and cards today to help reach out for support too. Thanks to the many, many people who have helped already.
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