Long days usually start with you waking up and thinking, "I am so glad this is Thursday" but then quickly realizing that it is actually Wednesday....that is how I started my day. Haha...
Melissa has taken the reigns on her meds and done a great job. One less thing on my plate. I always hated pestering her to take her meds. I think I apologized, for some reason, every single time I had to wake her or give her a shot.
Took little man to Walmart...always a fun outing (...uh, not!). We did manage to find him a coat and a new shirt for school...though I swear, there was like 6 racks of boys stuff and about 60 of girls stuff....NO FAIR! I actually plan on emailing Walmart about that. Sexist fascists! haha....
Hamburger helper ranks high on little man's list of desired diners....so we had that for diner. Not our favorite...oh the sacrifices good parents make!
Thursday, January 31, 2013
Wednesday, January 30, 2013
1/29/2013
When something like Brain Cancer invades your families life, you become addicted to learning about the subject...symptoms, treatments, anatomy, and coping....today I read this simple phrase...
"You CAN NOT live in fear." It went on to explain how part of a doctor's job is to treat you as if you will survive....I can not say 100% that we have received that. It went further to say that living in fear of losing this battle would near ruin the precious time we still have. Ok, all good and well....mind over matter, I get that...but how? Every minute of every day...with every breath, I am scared. Jeez...scared for me, for her, and for our son. "Cancer Sucks" is the understatement the century. What I hope is that treatment, scans, SOMETHING will give me the spark I need....because when I think about what really scares me, I can not breathe.
Enough morbid mess....today I was so graciously stopped at a green light by a Cowboys fan who insisted I miss the light to spend some quality time looking at his Cowboys stickers....of which he gestured at as soon as I stopped. Dude a little bitter.
Tuesday, January 29, 2013
1/28/2013
Monday, Fun-Day...right?
Back to the grind, I suppose. An icy start to the day caused a late delay for what turned out to be the best roads I have seen in days. haha....but I suppose it is hard to call when freezing rain is falling at 6am. Oh well....Mom helped delivery the child to school.
Nurse visits today....more labs. This time, no needles needed. Hurrah for the pick line. It comes out Friday, we hope....as the end of the antibiotics is expected.
Also, hospital bills started arriving today. Her surgery cost almost 300K, including the hospital stay related to it....but our part was a mere $1,700. At that point, I mean, really? You need that 1.7K when you have received payment already for over 99% of that? Haha...
Now, add that bill to the other 3 hospital stays, tests, and office visits...uh....but, we will pay what we can, when we can, most likely forever...so be it. I didn't have good credit anyway. Speaking of credit, the news was talking about a new dating site that matches you based on your credit score. Ha! What is next, a dating site of cancer survivors that share matching scares, missing limbs, missing boobs, or huge medical debt?
Back to the grind, I suppose. An icy start to the day caused a late delay for what turned out to be the best roads I have seen in days. haha....but I suppose it is hard to call when freezing rain is falling at 6am. Oh well....Mom helped delivery the child to school.
Nurse visits today....more labs. This time, no needles needed. Hurrah for the pick line. It comes out Friday, we hope....as the end of the antibiotics is expected.
Also, hospital bills started arriving today. Her surgery cost almost 300K, including the hospital stay related to it....but our part was a mere $1,700. At that point, I mean, really? You need that 1.7K when you have received payment already for over 99% of that? Haha...
Now, add that bill to the other 3 hospital stays, tests, and office visits...uh....but, we will pay what we can, when we can, most likely forever...so be it. I didn't have good credit anyway. Speaking of credit, the news was talking about a new dating site that matches you based on your credit score. Ha! What is next, a dating site of cancer survivors that share matching scares, missing limbs, missing boobs, or huge medical debt?
1/27/2013
Happy Birthday Melissa! She got a cool portable hard-drive from me. Our lap top is trash...battery and fan is bad, so it will burn out any day now, so I wanted her to be able to back up all her pictures and such...and it worked like a champ.
Had a nice quiet Birthday/Sunday - video games with the midget and caught up on some TV.
Still researching hospitals...thinking Duke may be the way to go for a serious second opinion....though, I think we plan on giving Massey at VCU and The Thomas Johns Center a try first...but I really think both me and Melissa want total care...not just a generic poison regiment. "Cookie cutter" treatment is for pimples or tooth cavities, not brain tumors. We are not going to be treated like "just another patient" in a near impossible battle with a terrible disease. Boom.
Had a nice quiet Birthday/Sunday - video games with the midget and caught up on some TV.
Still researching hospitals...thinking Duke may be the way to go for a serious second opinion....though, I think we plan on giving Massey at VCU and The Thomas Johns Center a try first...but I really think both me and Melissa want total care...not just a generic poison regiment. "Cookie cutter" treatment is for pimples or tooth cavities, not brain tumors. We are not going to be treated like "just another patient" in a near impossible battle with a terrible disease. Boom.
Monday, January 28, 2013
1/26/2013
After all the talk about snow angels, it seems PS3 was more important to little man than snow. I cooked us some breakfast and we worked on doing as little as possible. About 4pm he says, "Daddy! Why didn't you take me outside?"...as he gazed outside at the snow, that had melted back so the grass was sticking through. I told him, "You were too busy playing video games." He replies, "Oh yeah." Oh yeah....
Melissa has not kept much of a schedule at all...I am sure she gets 10 hrs of sleep, but it may be broken up into 3 or 4 different attempts to sleep....but besides that, these past couple days have been among the most consistent since this whole ordeal started. Consistent is nice.
The fundraiser on GiveForward has really been doing well! I have to thank, again, the ones who have donated and shared the link. Sharing is key! So please keep sharing the link with friends, family, your church, or anyone you think may consider helping. The we are only 5% into a pretty large goal...but the early success has me very optimistic.
Link:
http://www.giveforward.com/barrsbattlebraincancer
Melissa has not kept much of a schedule at all...I am sure she gets 10 hrs of sleep, but it may be broken up into 3 or 4 different attempts to sleep....but besides that, these past couple days have been among the most consistent since this whole ordeal started. Consistent is nice.
The fundraiser on GiveForward has really been doing well! I have to thank, again, the ones who have donated and shared the link. Sharing is key! So please keep sharing the link with friends, family, your church, or anyone you think may consider helping. The we are only 5% into a pretty large goal...but the early success has me very optimistic.
Link:
http://www.giveforward.com/barrsbattlebraincancer
Saturday, January 26, 2013
1/25/2013
Well, we are expecting snow. Little man is pretty excited. He has a craving for snow angels and he will get his shot Saturday morning.
It started snowing earlier than expected, so school closed early. I decided to pick little man up because I had more than one reason to go to the school today....I received a damn truancy letter in regards to the absences my son had during my wife's DAMN brain surgery. What a group of absolute idiots and heartless bastards. No nice way to put it. That school....I swore, though, I would be nice....and boy was I! I spoke with the Principle. She was near heartless. She looked at me in a way I recognized...but I will not pull the :"white card" just yet. I explained the absences, as my wife did, to almost everyone else in the school prior to picking him up, in person....she explained the surgery, diagnosis, and wanted to "make sure it was ok". The Principle said I should have made an appointment with her to discuss it. Well, she was not there. Can't one of the other people in the office explain? Is this a school are a small Dictatorship? Communication....these people are scared of this lady and I do NOT blame them. She is scary. Needless to say, I told her our story, as best my scrambled mind could remember....reassured her he should not miss any more time, and, well, kissed her ass. Shame on her...shame on the school system that supports a hateful woman like that....but this is where I live and what comes with it, I suppose. Gonna be much harder to change that now. What she did lack to mention, but what I made sure she was absolutely aware of, is that my son has improved in school, despite crowded classrooms and his mom being diagnosed with brain cancer....despite that heartless principle and the fear she casts over her teachers...and despite missing some school, he is working hard and is smart. Gotta give him some credit. Lord knows, I have not been 100% at anything, including my Madden, since the first day I found out. Part of the reason I write this blog is so that, years from now, regardless of where our family ends up, I can look back and figure out how the hell we got here....maybe even help a few others on similar journeys.
Meanwhile, it is snowing pretty good. Think the midget will be happy with the results.
Then the mail came. Normally, the mail just means a hand full of bills and ads for thing that want to be bills. Today was different....there was two packages. One for me and one for Melissa. She opened hers to find many hats right down her ally from her Aunt. The return address on mine....Redskins Park. A few weeks back I was nominated by a twitter follower for tickets to a game through a non-profit started by Lorenzo Alexander #97, called the Aces Foundation http://www.lorenzoalexander.org . I received an email from him stating the tickets were given to someone else, but he had read my blog, was praying, and wanted to send us something. Weeks went by and I had almost forgotten....almost. I opened it to find a note from #97 and a signed shirt, with a promise for another shirt in my size. This is priceless to me....far better than tickets (though, if you reading this Mr. Alexander, I can travel to a game any old time too, haha). So, I had a pretty strong smile on my face. Good ending to a long day.
Oh, and Melissa is fine...sleepy but better than ever. Even helping with her own meds for a change....nice.
It started snowing earlier than expected, so school closed early. I decided to pick little man up because I had more than one reason to go to the school today....I received a damn truancy letter in regards to the absences my son had during my wife's DAMN brain surgery. What a group of absolute idiots and heartless bastards. No nice way to put it. That school....I swore, though, I would be nice....and boy was I! I spoke with the Principle. She was near heartless. She looked at me in a way I recognized...but I will not pull the :"white card" just yet. I explained the absences, as my wife did, to almost everyone else in the school prior to picking him up, in person....she explained the surgery, diagnosis, and wanted to "make sure it was ok". The Principle said I should have made an appointment with her to discuss it. Well, she was not there. Can't one of the other people in the office explain? Is this a school are a small Dictatorship? Communication....these people are scared of this lady and I do NOT blame them. She is scary. Needless to say, I told her our story, as best my scrambled mind could remember....reassured her he should not miss any more time, and, well, kissed her ass. Shame on her...shame on the school system that supports a hateful woman like that....but this is where I live and what comes with it, I suppose. Gonna be much harder to change that now. What she did lack to mention, but what I made sure she was absolutely aware of, is that my son has improved in school, despite crowded classrooms and his mom being diagnosed with brain cancer....despite that heartless principle and the fear she casts over her teachers...and despite missing some school, he is working hard and is smart. Gotta give him some credit. Lord knows, I have not been 100% at anything, including my Madden, since the first day I found out. Part of the reason I write this blog is so that, years from now, regardless of where our family ends up, I can look back and figure out how the hell we got here....maybe even help a few others on similar journeys.
Meanwhile, it is snowing pretty good. Think the midget will be happy with the results.
Then the mail came. Normally, the mail just means a hand full of bills and ads for thing that want to be bills. Today was different....there was two packages. One for me and one for Melissa. She opened hers to find many hats right down her ally from her Aunt. The return address on mine....Redskins Park. A few weeks back I was nominated by a twitter follower for tickets to a game through a non-profit started by Lorenzo Alexander #97, called the Aces Foundation http://www.lorenzoalexander.org . I received an email from him stating the tickets were given to someone else, but he had read my blog, was praying, and wanted to send us something. Weeks went by and I had almost forgotten....almost. I opened it to find a note from #97 and a signed shirt, with a promise for another shirt in my size. This is priceless to me....far better than tickets (though, if you reading this Mr. Alexander, I can travel to a game any old time too, haha). So, I had a pretty strong smile on my face. Good ending to a long day.
Oh, and Melissa is fine...sleepy but better than ever. Even helping with her own meds for a change....nice.
Thursday, January 24, 2013
1/24/2013
Snow is falling this morning! Granted, it is not expected to accumulate much, it is still pretty.
On a different note...
Every day, I sneak a special treat into my little man's lunch box....mini muffins, Reeses cup, mini-marshmallows....always something. He sneaks a peak before lunch everyday. It's just a little cute thing we do...every day he notices. The kid does not miss much. I use his fresh, accurate memory as a memo pad sometimes..."remind Daddy to find you other coat tonight"..."remind Daddy to wash some of your clothes tonight" and so forth...he always remembers.
Melissa feels good today and is almost, ALMOST, sticking to her drug regiment. Baby steps...
She has had no relapse of swelling, though the "skull flap" (great band name, BTW) was hurting some, she is doing well. About time to reschedule the oncology appointments...oh joy.
The radiation will be 5 days a week for 35 min a day for 6 weeks...not sure how I will ever pull off this logistical nightmare, beings the hospital is like 30 miles away and she can't drive, but what choice do we have? Just have to find a way.
I am a very patient person...for the most part (as long as it doesn't involve football, really-REALLY stupid people, or mimes). This gift, as most would call it, has come in quite handy lately. Yet, it is tested daily. Melissa will not answer her phone...not just today, but hardly ever. Perhaps it is because I call her during my work day, which happens to coincide with her "sleep-day"...needless to say, it urks me like crazy. Today, I happen to have important info about her doses changing, yet, she does not answer. Hahaha...I mean, we got new phones last month because hers was broken....this one might be as well. haha....
On a different note...
Every day, I sneak a special treat into my little man's lunch box....mini muffins, Reeses cup, mini-marshmallows....always something. He sneaks a peak before lunch everyday. It's just a little cute thing we do...every day he notices. The kid does not miss much. I use his fresh, accurate memory as a memo pad sometimes..."remind Daddy to find you other coat tonight"..."remind Daddy to wash some of your clothes tonight" and so forth...he always remembers.
Melissa feels good today and is almost, ALMOST, sticking to her drug regiment. Baby steps...
She has had no relapse of swelling, though the "skull flap" (great band name, BTW) was hurting some, she is doing well. About time to reschedule the oncology appointments...oh joy.
The radiation will be 5 days a week for 35 min a day for 6 weeks...not sure how I will ever pull off this logistical nightmare, beings the hospital is like 30 miles away and she can't drive, but what choice do we have? Just have to find a way.
I am a very patient person...for the most part (as long as it doesn't involve football, really-REALLY stupid people, or mimes). This gift, as most would call it, has come in quite handy lately. Yet, it is tested daily. Melissa will not answer her phone...not just today, but hardly ever. Perhaps it is because I call her during my work day, which happens to coincide with her "sleep-day"...needless to say, it urks me like crazy. Today, I happen to have important info about her doses changing, yet, she does not answer. Hahaha...I mean, we got new phones last month because hers was broken....this one might be as well. haha....
Wednesday, January 23, 2013
1/23/2013
The Birthday Party last night was quite a success. Special thanks to the staff and owners of Longstreet's. We just love all of you guys!
Please, if you are in Central VA (or driving through) you MUST stop for lunch or diner at Longstreet's!
The candle on Melissa's cake was a real sight to see....at first, it looked like an unopened flower. Lit, it shoots flames like a torch, while singing Happy Birthday (of course), then blooms into a multitude of lit candles. My aunt found them at the commissary. Very cool.
Special thanks for all the gifts and birthday cheer.
Also proud to announce Melissa is abiding by her medication schedule better now too....but there is still some room for improvement.
Please, if you are in Central VA (or driving through) you MUST stop for lunch or diner at Longstreet's!
The candle on Melissa's cake was a real sight to see....at first, it looked like an unopened flower. Lit, it shoots flames like a torch, while singing Happy Birthday (of course), then blooms into a multitude of lit candles. My aunt found them at the commissary. Very cool.
Special thanks for all the gifts and birthday cheer.
Also proud to announce Melissa is abiding by her medication schedule better now too....but there is still some room for improvement.
Tuesday, January 22, 2013
1/22/2013
Birthday Party tonight! Longstreets at 6pm! Special thanks to Longstreets for allowing us to takeover part of their restaurant for the night! It is my and Melissa's favorite place (no hard feeling to all the other great businesses in downtown). If you are reading this blog, you are welcome to come! Should be a little music...grad yourself some diner and a few adult beverages.
Please keep sharing the fundraiser. Many have helped, donated, or previously lent a hand and I will always remember that. We still have a battle ahead...no telling how long before she can work again, so the worst days lay ahead and I want to stay out in front of this thing.
Had to head home to chastise my dear wife yet again on abiding by her medications. This has been hard on her, both of us really, but when it comes down to it, she has to show me she is responsible enough and cares enough about herself to do what doctors ask and take what she is supposed to take WHEN she is supposed to take it. These antibiotics need to taken on time. I will step off the soapbox now.
I found the most inspiring blog yet.
http://thelizarmy.com/
Seems she faced a very similar crisis at a very similar age. She was focused, motivated, and determined to beat brain cancer and is doing just that. I plan on showing Melissa this blog.
Please keep sharing the fundraiser. Many have helped, donated, or previously lent a hand and I will always remember that. We still have a battle ahead...no telling how long before she can work again, so the worst days lay ahead and I want to stay out in front of this thing.
Had to head home to chastise my dear wife yet again on abiding by her medications. This has been hard on her, both of us really, but when it comes down to it, she has to show me she is responsible enough and cares enough about herself to do what doctors ask and take what she is supposed to take WHEN she is supposed to take it. These antibiotics need to taken on time. I will step off the soapbox now.
I found the most inspiring blog yet.
http://thelizarmy.com/
Seems she faced a very similar crisis at a very similar age. She was focused, motivated, and determined to beat brain cancer and is doing just that. I plan on showing Melissa this blog.
Monday, January 21, 2013
1/21/2013
Happy LJK day...and inaugural day! Something is drastically wrong when a hip-hop mogul sits two rows back from the former Presidents of the United States at the inauguration. I am just saying...Jay Z, really?
So, no blood test have been done checking her white blood cell count since we left the hospital. I found that out today from the home healthcare company....but they did draw blood today to be tested, so may have those up tomorrow. What we are watching for is a drop in her white blood cell count, as a result (hopefully) of dealing with this infection. The puffiness is still there...maybe a little better than yesterday...not sure. Doctors say as long as she does not run a fever or have any bad headaches, we are good. I plan on pressing for an after surgery MRI, but fear I may have to reach out for second opinion to have that done...either way, the more eyes the better....time to make some more appointments.
The GiveForward account has been cool, but since the first initial support and donations, has slowed down considerably. Please, help me promote the page....print the link and take it to church, forward the link to your email contacts, forward it to friends, Tweet it to celebrities....social media can really help that site reach out, but it all starts with the initial friends, shares and tweets.
http://www.giveforward.com/barrsbattlebraincancer
I have found that, when frustrated and speaking about the brain cancer thing, I tend to curse a little...caught myself today....and though, I was not cursing out the doctors, my frustration was evident. I have been impressed about some of our treatment and just the opposite about other aspects of our care. Treatments discussed have been vague...really, almost everything that has been explained to us was vague in nature. You have to pry to get the facts...trick is, know where to pry and what to ask. It has shocked me that our hospital offers no one to talk to, besides a Chaplin, and no help and guidance at all with social workers or financially surviving cancer. Pretty sad....at least I am capable and internet savvy...I just did my own research.
So, no blood test have been done checking her white blood cell count since we left the hospital. I found that out today from the home healthcare company....but they did draw blood today to be tested, so may have those up tomorrow. What we are watching for is a drop in her white blood cell count, as a result (hopefully) of dealing with this infection. The puffiness is still there...maybe a little better than yesterday...not sure. Doctors say as long as she does not run a fever or have any bad headaches, we are good. I plan on pressing for an after surgery MRI, but fear I may have to reach out for second opinion to have that done...either way, the more eyes the better....time to make some more appointments.
The GiveForward account has been cool, but since the first initial support and donations, has slowed down considerably. Please, help me promote the page....print the link and take it to church, forward the link to your email contacts, forward it to friends, Tweet it to celebrities....social media can really help that site reach out, but it all starts with the initial friends, shares and tweets.
http://www.giveforward.com/barrsbattlebraincancer
I have found that, when frustrated and speaking about the brain cancer thing, I tend to curse a little...caught myself today....and though, I was not cursing out the doctors, my frustration was evident. I have been impressed about some of our treatment and just the opposite about other aspects of our care. Treatments discussed have been vague...really, almost everything that has been explained to us was vague in nature. You have to pry to get the facts...trick is, know where to pry and what to ask. It has shocked me that our hospital offers no one to talk to, besides a Chaplin, and no help and guidance at all with social workers or financially surviving cancer. Pretty sad....at least I am capable and internet savvy...I just did my own research.
Sunday, January 20, 2013
1/20/2013
Our roommate cooked a nice breakfast today. That was nice...allowed me and midget to beat Uncharted 2 this morning.
Melissa did not want to get up...when she did, we noticed some swelling came back, right between her eyes. Jeez....we just can not buy a break. We are now hawking her temperature, fearing yet ANOTHER hospital stay. I like our neurosurgeon and this neuro nurses, but the the infectious disease doctors are really, really letting me down. I think I may seek a second opinion on treating that if we indeed end up in the hospital again. Also, for those attending, or planning on attending Melissa's "used-to-be a surprise" birthday party Tuesday may want to check out Facebook and blog posts before heading down....she may end up back in the hospital....I hope not, but if so, I will post it so people know. One thing is for sure, I called and left some messages in an attempt to light some fires under these doctors.
Melissa did not want to get up...when she did, we noticed some swelling came back, right between her eyes. Jeez....we just can not buy a break. We are now hawking her temperature, fearing yet ANOTHER hospital stay. I like our neurosurgeon and this neuro nurses, but the the infectious disease doctors are really, really letting me down. I think I may seek a second opinion on treating that if we indeed end up in the hospital again. Also, for those attending, or planning on attending Melissa's "used-to-be a surprise" birthday party Tuesday may want to check out Facebook and blog posts before heading down....she may end up back in the hospital....I hope not, but if so, I will post it so people know. One thing is for sure, I called and left some messages in an attempt to light some fires under these doctors.
1/19/2013
Nice, quiet Saturday morning. Tried to take the midget out to breakfast but he is video-game bound to stay home...so hit the Hardees drive through instead.
Dad cooked a crazy delicious piece of pork we obliterated. Haha....
No change in her condition, which has been really nice. She is feeling much better, though, her sleep schedule, or should I say "lack there off" is driving me and her medicine schedule absolutely crazy, that was kind of normal. haha....
Dad cooked a crazy delicious piece of pork we obliterated. Haha....
No change in her condition, which has been really nice. She is feeling much better, though, her sleep schedule, or should I say "lack there off" is driving me and her medicine schedule absolutely crazy, that was kind of normal. haha....
Friday, January 18, 2013
1/18/2013
It snowed last night! This storm was more pretty than anything...the roads were good and the yard will melt by this afternoon. Little man really, really want to stay home today and play in the snow, but I was able to convince him to go to daycare for the day with the promise of GameStop, if he is good today. I sure hope we get more snow this winter. I would love for him to get his chance to play in the snow this winter.
Thursday, January 17, 2013
1/17/2013
Melissa really likes her Neurosurgeon...well, we both do. You never want to have to use those words, but he is a really good guy....smart, anal, and experienced. We kind of lucked into that, really....I mean, who knows anything about Neurosurgeons until you need one...and even then, you probably will have no idea if they are good or not until after surgery. We lucked out.
Though we like him, and all, we hope to not need his surgical skill-set again.
Here is a candid shot of our Neurosurgeon...doing whatever it takes to make a patient feel better.
After a successful surgery, it is nice to kick back and relax with a short, pink wig.
No, he does not do parties....
Melissa brought her fun wig selection to the hospital...he grabbed the wig, she grabbed the camera. I have to say, the wig and the goatee, not a great look for him, but fun never-the-less.
In the doc's defense, this is an awfully well dressed and stylish guy, normally.
While I am mentioning hospital staff...I have to say, we have grown fond of several of the nurses as well (you know who you are)...the Neuroscience floor really has it's stuff together.
Though we like him, and all, we hope to not need his surgical skill-set again.
Here is a candid shot of our Neurosurgeon...doing whatever it takes to make a patient feel better.
After a successful surgery, it is nice to kick back and relax with a short, pink wig.
No, he does not do parties....
Melissa brought her fun wig selection to the hospital...he grabbed the wig, she grabbed the camera. I have to say, the wig and the goatee, not a great look for him, but fun never-the-less.
In the doc's defense, this is an awfully well dressed and stylish guy, normally.
While I am mentioning hospital staff...I have to say, we have grown fond of several of the nurses as well (you know who you are)...the Neuroscience floor really has it's stuff together.
Wednesday, January 16, 2013
1/16/2013
Yesterday, the Fundraising Page went live.
http://www.giveforward.com/barrsbattlebraincancer
By no means do I expect every person I know to contribute...especially those who have kicked in already. I even received apology messages from Twitter friends of my Redskins page. Guys, never apologize for not having money to give away. Gosh, it is awkward for me to even ask. Donate if you can, if not, just share the link....help rally other support to the site. Do what you can and want to do. Do NOT feel obligated. GiveForward is a great tool to use to reach out across the world for help. It was the first suggestion of many of the Cancer related non-profits I have contacted.
Today we trained on our new "diffusing" method, of sorts, for antibiotics. The home healthcare nurse came. No pump...kind of cool really....her meds come in charged rubber-esk balls, pressurized to administer meds without a pump. Takes a bit longer per change, but no pump noises all day. Yeah!
Working on getting a home routine established yet again...the minute you get some rhythm and order to your day, something changes and stirs it all up again.
The goal, for the next couple weeks at least, is a return to normalcy! The meds are lighter...she is feeling much better...the bump is gone...the crazy steroid side effects are gone...we just want normal for a while. haha...we will all see how that works out.
Mom brought meatloaf and fixing for dinner...man, hit the spot. She normally is a tomato-topped meatloaf gal...went brown gravy for us last night instead...well, for little man...good call midget.
http://www.giveforward.com/barrsbattlebraincancer
By no means do I expect every person I know to contribute...especially those who have kicked in already. I even received apology messages from Twitter friends of my Redskins page. Guys, never apologize for not having money to give away. Gosh, it is awkward for me to even ask. Donate if you can, if not, just share the link....help rally other support to the site. Do what you can and want to do. Do NOT feel obligated. GiveForward is a great tool to use to reach out across the world for help. It was the first suggestion of many of the Cancer related non-profits I have contacted.
Today we trained on our new "diffusing" method, of sorts, for antibiotics. The home healthcare nurse came. No pump...kind of cool really....her meds come in charged rubber-esk balls, pressurized to administer meds without a pump. Takes a bit longer per change, but no pump noises all day. Yeah!
Working on getting a home routine established yet again...the minute you get some rhythm and order to your day, something changes and stirs it all up again.
The goal, for the next couple weeks at least, is a return to normalcy! The meds are lighter...she is feeling much better...the bump is gone...the crazy steroid side effects are gone...we just want normal for a while. haha...we will all see how that works out.
Mom brought meatloaf and fixing for dinner...man, hit the spot. She normally is a tomato-topped meatloaf gal...went brown gravy for us last night instead...well, for little man...good call midget.
Tuesday, January 15, 2013
1/15/2013
Found a great little website, I am sure spawned from a very similar brain cancer experience...
http://www.braintumorhumor.com/home.htm
I tell ya, you have to be able to find a way to keep laughing through janked-up mess like cancer.
Turns out, our hospital trip last time was a bit more serious than either me or Melissa realized. She did, in fact, come in with moderate to severe bacterial meningitis two days before Christmas. Google it...we have already dodged a bullet and didn't even know it. Doctor mentioned it a couple days ago and we both looked at each other like, "what the huh?"...yep. Guess I reacted fairly well in the face of almost certain doom...bouyakashon!
Yeah...released from the hospital...I'll be it, another late night release, who cares....she is home. Boom.
http://www.braintumorhumor.com/home.htm
I tell ya, you have to be able to find a way to keep laughing through janked-up mess like cancer.
Turns out, our hospital trip last time was a bit more serious than either me or Melissa realized. She did, in fact, come in with moderate to severe bacterial meningitis two days before Christmas. Google it...we have already dodged a bullet and didn't even know it. Doctor mentioned it a couple days ago and we both looked at each other like, "what the huh?"...yep. Guess I reacted fairly well in the face of almost certain doom...bouyakashon!
Yeah...released from the hospital...I'll be it, another late night release, who cares....she is home. Boom.
1/14/2013
I am working on a dedicated, chronological blog to transfer these posts into...make it more user-friendly for phone readers.
Also, I started a fundraising page...please share it...every day...every hour of every day...share it....oh, and donate, if you have it in your budget.
http://www.giveforward.com/barrsbattlebraincancer
More positive results today....the fluid mysteriously dripping from her nose was, in fact, NOT brain fluid....a plus. Still good blood tests and no more massive bump on the head! Damn....two good days in a row. Holla!
1/13/2013
I slept good....she did as well, although she is disturbed about every 2 hours or so by nurses.
Blood tests so far have shown some real improvement, infection wise. Her noise also stopped dripping....which is really good also. The lump on her head, which she has worn for the past few weeks, is almost gone! That will really help her feel better about herself.
They are running more tests just to be sure....and we are still awaiting more results on exactly what the fluid from her nose was. Maybe tomorrow.
I left her at the hospital this afternoon to get little man home.....do some laundry and pack another round of hospital needs to go up tomorrow after work.
It has been suggested that I need to find a way for my blog to be more user friendly....so I will work to find a solution....perhaps a dedicated blog....although, I love the hits to me Redskins blog. haha....
1/12/2013
Oh, the fun of hospitals. Melissa spent the day being poked and prodded, for good reason I suppose. So far, so good....the antibiotics she is on is doing wonders with the lump she has been wearing since this infection started.
Tonight we watched a movie on a friends lap top. That was pretty cool. Hospital sleepover party...treating the nurses to Starbucks (well, got some coffee and took over the coffee pot for the night). That Verona Blonde is special stuff.
1/11/2013
As much as we want people to understand what we are going through, most don't...and I am not even sure we do sometimes. This entire ordeal is so unfair...unlikely....uncommon...and Melissa is so not deserving of any of this. This is so hard to deal with...every flipping aspect of it. I hate to leave her side, but because SOME people do not understand the magnitude of things, I can't be there as much as I wish I was....there is nothing easy at all about any of this....especially the days were I am forced to miss work or miss time with my son...trust me, when I at that hospital and dealing with this crisis, the only joy to be found is doing what I can to make my wife's day better.
The weekend is upon us and I plan on spending the entire weekend with my honey, at her beside. Got all her stuff packed up to drag back to the hospital. Probably stay over Saturday night, if a recliner can be found...if not, I will stay late and return early.
Cancer, the gift that just keeps giving.
1/10/2013
We had the first Oncology appointment today...did not go well. Melissa registered a fever, for the first time since our Christmas hospital stay, of 101.6...and the nasal drip, NOT NORMAL drainage. Our next stop was the ER. After more poking, IV's, blood tests she is re-admitted. Yeah...hospital stay 4 in a months time! After a lengthy stay in the ER, she was sent to the 4th floor (usually, we are on the 2nd floor, but it was full). It was horrid. The Neuro 2nd floor is nice and remodeled....nice chairs, flat screen TV's, and super nurses. The 4th floor has not been updated in 30 years or longer. The desk and chair in the room looked like it was 50 years old. Melissa was not at all impressed with the nurses there...I mean, they seemed nice but not the sharpest tools in the shed, so to speak.
1/9/2013
Nurse thought little of the nasal drip....but I know there is more to this thing.
For those who have not seen Ted yet, loose the kids for a while and watch this movie....too funny and wrong in all the right ways.
Found an organization called "Cancer Sucks"...it is so true. SO true.
1/8/2013
Watched Lincoln tonight....and I have to say, my hometown of Petersburg is one of the biggest stars in the movie. Pretty cool thing.
Melissa's nose is dripping...odd, thin stuff....warrants watching and mentioning to the nurse.
1/7/2013
Another Monday....uh...I tell ya, it never lets up.
Some light-hearted tumor humor...
Brain cancer patients know, a bad wig looks worse than a massive head wound scar.
Is it too early for jokes?
Talking About Death Three buddies were talking about death and dying.One asked, "When you're in your casket and friends and family are mourning you, what would you like to hear them say about you?"The first guy says, "I would like to hear them say that I was a great doctor of my time and a great family man."The second man says, "I would like to hear that I was a wonderful husband and school teacher who made a huge difference in our children of tomorrow."The last guy says, "I would like to hear them say LOOK, HE'S MOVING!!!"
No health updates, as of yet...doctors this week and next week.
1/6/2013
Yet another lazy day...this weekend has been our real, first family down-time...and we are enjoying it. Dad cooked a large chunk of pork, on the grill, that got munched on all day.
The Redskins lost tonight. All good things must come to an end, I guess....but seems to me that pushing that rookie to play hurt cost us the win....plain and simple.
1/5/2013
Melissa expressed an interest in seeing New York City....so, some how, some way, we will be seeing NY City soon. haha....I researched some treatment options and hospitals there...some of the best in the world, as you would expect.
Swelling from the infection is still bad...and seemingly not wanting to get better...I am loosing my patience with this...but, am reassured by doctors it is normal and will go away.
Today was filled with lounging and movies...with only one major item of the agenda....(drum roll, please)...put up Christmas! Got that and some bill-paying knocked out and enjoyed the rest of a quiet day.
1/4/2013
For the first time in quite a while, probably since this entire tumor thing started, me and Melissa got a decent nights sleep... adjuring to bed around 8:30pm. It was nice...though, whether she knows or not, I get cold and wake every time she gets up to pee (thanks to Mr. IV pump, it is like she is up drinking water all night long, thus lots of pee-ing)...but even with the disruption, we both managed a good nights sleep for a change. Much needed....hell, we are almost on the same schedule again.
Our first Christmas Break from little man's school did not go very well, as we seem to have lost both lunch boxes, his homework, and a bunch of pencils...so his first day back, he was pretty bare, as he went in with nearly empty back pack. I knew about the lunchboxes yesterday, but was not aware of the empty back pack until he came home talking about how he had no crayons or pencils....since we stock up on those, I got him straight. The lunch boxes, though, look to present more of a challenge and will most likely lead to me cleaning to find them....something I probably need to catch up on anyway. Oh happy day....between that and the Christmas tree still standing, fully decorated, I have my work cut out for me.
I picked up lunch at my favorite spot, Longstreet's, today. I have to say, I love that place. Not just the food or all the wonderful beers on tap...but the people. It is owned and run by just good people...and good people, when running businesses, seem to surround themselves with good people, and Longstreet's is just that case. When you spend money there, you are proud to have done so...and you tell friends and visitors just that...."You have to check out Longstreet's." Old Town is full of those kinds of businesses.....those kind of business owners. When you spend money at Walmart or Subway, you may have gotten the best bargain for your money, but were you proud? Did you tell your friends, "You gotta try that Subway....you should take your wife to eat there." When people talk "Shop Small Business" they mean "Shop Proud"...and that money stays right here in our community....helping good people right near your community, or in your community, or you.
1/3/2013
Working in an office, after the new year is always fun....I think I have written 2012 before correcting it at least 30 times this morning. I suppose I am just a wee bit distracted.
Today we work on finishing the disability application, medicaid, and then focus on finding some resources to help with utilities, when things get to that point. The paperwork alone is a full time job. A friend suggest I get assemble a team of paperwork helpers....I understand that suggestion perfectly now. I can tell you, just keeping your house and bills straight under immense stress is hard enough....tack on a dozen new jobs and a healthy dose of legal paperwork and consider yourself burnt. I am just going to keep chipping away at it. Melissa is actually doing some calling and stuff today too...I hate to even ask her to, as telling the story over and over will eat away at you. The blog has been a great resource to send people to that want to hear the entire story....so please, share it with friends or anyone who can benefit from it.
I may be on the Channel 6 news tonight...interviewed about the new Superintendent.
I read a great blog today from a long-term terminal cancer patient.
http://www.terminaltimes.net/2012/01/what-not-to-say-to-cancer-patient.html
It really hit close to home and put a smile on my face. Great info...priceless...the cost of such info includes dealing with these kinds of dastardly illnesses directly. It made me think, I have blogged about my feelings, Melissa's feelings, our drama, how OUR life is affected, without mentioning how hard this must be on friends and family, both close and distant. Fact of the matter is, until something like this happens to a friend or loved one, it is hard to know what to say or do to help. I have to say, I am proud of my close friends and family....many have reached out and it means a lot....some have not messaged, called, "liked" a post or anything. For those who have no idea what to say or do, I understand. The blog link above can really shed some light on what to say, how to help, and where a cancer patient is during the entire ordeal.
I keep finding myself wanting to put an end-date on the whirlwind brain-cancer crap we are dealing with, when the fact is, this will always be a part of our life now, regardless of outcome. Under the best of circumstances, we will always have this and other related health issues to deal with. It is hard to believe that life, as it was prior to this, will never be again...and, if anything, it does put a polish and special shine on what was thought, back then, to not be that great of times...haha...and it is impossible, as well, to look forward to what could come....thus, I now understand the multiple meanings of "One Day at a Time".
1/2/2013
Back to work...back to school...oh joy.
The nurse came today. Yeah! I did not have to change the IV bag today. I swear, I have a anxiety attack every time I have to change those things.
We called the doctor today about the swelling from this infection....we were given yet another open-ended explanation....basically "it will go down eventually". Doctors should not be allowed to guess like weatherman.
Little man is so cute...when he got home, he, of course, wanted to play video games. When he removed the disk I had in the game, he noticed it was the new Madden. He asked, "Where did you get that?" When I told him GameStop he broke down...seems I promised him a trip when his great aunt sent him some Christmas money...so, today, I took him to GameStop with his money (and some choice coupons) so he could get some new games. He was very happy to play them all night long...with my help, of course.
1/1/2013
Happy New Year! We spend out new years relaxing. I have so much I could have done...so much...but, honestly, since Thanksgiving I had not had a day or so to relax....so I did just that for New Years....I sat. I played video games...watched Sportscenter, Redskins Nation, and some movies. No work of any kind, besides the medicine regiment and dreaded IV flush and bag change.
After my two-day brake, I face a ton of "to-do's", including attempting to get her short-term disability to pay out, getting the SSD application finished, getting Medicaid application completed, and the host of other non-profit resources that can lend a helping hand.
Next week begins a host of doctors appointments....Radiologist, Oncologist, Neurologist, Primary Care Doctor....oh joy.
Melissa's swelling has still not subsided any. It has me worried...I read some horror stories of folks with similar post-op infections while trending down on the steroids (which is what we are doing also). Going to call the doctors today when the nurse is there.
I have had a few contact me about sending some help, in the form of money. I hate taking hand-outs. During Holiday Season, it helped make things a bit less awkward. Now that the Holiday Season is passed, though, it is hard for me to accept help...and even harder to ask for help. At the same time, I would be doing my family an injustice to refuse help when we do need it. I really need to get a handle on where we are at, financially. So much has happened in the past month that my head is spinning...I know some bills are paid, others I know are due. I have yet to see any of the medical bills, besides the co-pays we have paid. Just know, any money given will go directly to bills, unless instructed otherwise.
12/31/2012
Happy New Years Eve to all! No crazy plans for this young couple...just a nice quiet night...video games, food, movies, and my baby.
I swear, my back still hurts from the daily dreaded "changing of the IV back and IV flushing"...I am so tense when I do it....like to have had a panic attack the first couple times.
Her swelling is still there, as it was over a week ago...not sure how much longer she will have to deal with it.
12/28/2012 - 12/29/2012 - 12/30/2012
Our visitors have left...our little man is at his grand parents....and we are relaxing. Got new phones because Melissa's broke Saturday. Good deal, too...beings I had not changed plans to the new ones, we ended up saving on the monthly bill for more service. Turns out I AM a smart phone guy. Besides the phone outing, we pretty much lounged and hung out....it is nice to just spend a little down time after this whole brain cancer thing and the holidays.
Melissa's care and condition have not changed much that past couple days. Blood sugar is easier to manage....the IV bag is still a scary ass thing to deal with, but getting that down. Worried, though...this infection has not gotten worse, nor better. These things take time, though...all we do is wait.
Melissa loves Radio Lab...in a story they did, they talked about having that moment when you scream because you are so happy...everyone needs a cheese-doodle moment...you have to listen...feel-good stuff...
http://www.radiolab.org/2012/dec/17/
My Redskins won, Sunday night....felt like it was just for me. I needed more Redskins football. I bet that stadium will be electric for that home playoff game.
12/27/2012
Long, but good today. Got the meds and the new schedule kind of down. I stayed up late the night before to memorize everything....study for the pump training we received today. I got off early to meet the nurse for our training, to find my wife gone and her pump at home....kinda flipped out a little...but we got everything back on track when the nurse arrived. Training went well...I know can change an IV bag...holla!
Today several friends reached out a helping hand...it is hard to react to, ya know...I mean, no doubt, with the bill we know about the the hoards we have yet to receive, the help is needed and welcome, but I am working hard to stabilize things...we started her disability paperwork...and of course, I have an error to correct on the cryptic short-term disability application....but all in the works to get us in a more manageable situation. While you guys are praying she will get better, throw a shout-out up there for help on this paper work...it is a nightmare, in of itself.
Nice to have a couple extra sets of hands around the house today...as Melissa's mother and niece (who is also little man's sister) were up to visit, from the great state of Alabama. They were a ton of help get picking up and helping straighten up...on of the last things on my priority list these days.
Diner today was thanks to Melissa's mom, who made the the best corned beef I have ever had, and I am not a corned beef kinda person, most times.
Set up my Christmas present....a Mr Coffee K-cup brewer....tight! Seems a little fru-fru, but "I does like my coffee fancy like". Due to volume restrictions with the new coffee machine, though, and a recent spike in my coffee ingestion, I will not retire my 12 cup pot.
12/26/2012
So, Melissa had a good day...she got to go home last night. Crazy, though, I can not believe a hospital would discharge a patient at 9pm at night...seemed quite disorganized, but maybe that is what it took to get her out of there yesterday as opposed to today. Looks like she will be on an antibiotic IV pump until early February, among countless other meds...got our first round of training on that yesterday. It is a bit overwhelming. Another round of training today! Yeah! I will be an experience RN by the time she is better. You couldn't pay me to do that kind of work....I respect the crap out of the people who can and do that for a living, but I would not like being a nurse...maybe a doctor, but not the cutting kind. So, the pump thing...though it allowed her to get home a month quicker, much like weekend jail, it comes with a cost....a stiff one at that! The copay alone for the pump and service is $72...A DAY! Ha! Never spent that much on any one thing my entire life. I bet there are serious drug addictions cheaper than that thing! haha...well, that is one way to push me to file her SS application and Medicare. Shame, because you would think that you may want to retire at some point in life when you beat this thing...hate to use your benefits before the age of 40. Thing is, I have great insurance...and still treatment and care is not affordable for a major illness, realistically. Unless this has happened to you, you are likely oblivious of the financial woes when facing a serious medical illness....copays for medicine, office visits, ER visits, hospital stays, home healthcare nurses, and all the other supplies for surviving a medical catastrophe Our healthcare system is broken....not to say that our coming changes are the answer, but I am glad they are trying something now, because getting sick and almost dying shouldn't cost you every penny you have and destroy your credit...I mean hell, at that point, you are not going to be living comfortably ever again...bares the question, why fight it? Obviously, you have to, but I tell you, I have known people way more worried about money and finances then I....and I would bet a few of them would think twice before signing away their financial future for a chance at survival. Lucky for Melissa, my family and friends are worth more than a good interest rate, any day of the week...twice as much on Sunday.
12/25/2012
Merry Christmas! Little man had a great day! I, on the other hand, truly struggled to enjoy my day. Just not the same with out her healthy and home. I did visit her twice today, both times delivering food and a large dose of love. Not sure it was enough to perk her up any today....the swelling seemed worse and she seemed more tired that previously. Hard to rest in any hospital...even harder on steroids.
I ran down to check her old room for her phone charger. A nice guy coming out of the elevator asked, "Having a nice Christmas?" Not sure what possesses a person in a hospital, for what can almost certainly be bad reasons, to ask a seeming stupid question. I answered him, "I would be lying if I told you it was anywhere near good", as I walked on by.
Tomorrow, I go back to work. I know it is what I need to do...get back to normal...but I am no where near normal right now. I can not explain all I feel, nor does any aspect of my day seem as routine as it was just a few weeks ago. Part of you just wants to be there for your wife, in every way....and sure, that includes financially...but it tears at me to spend time doing anything but spending it with her...I mean, the whole "what if" ya know. This entire event is like the my worst nightmare come to life and I can never wake up....life will never be what it was. It is a hard pill to swallow. I can handle having bad credit....making some bad decisions in life...but to have your life under attack by something completely random and out of your control....really, it's totally fucked up....just no nice way to put it. Like all things, we have to keep doing...roll with the punches and live best you can.
Thanks to any and all that helped with Christmas. We utilized gift cards to buy little mans Christmas...and he had a good one. I think I will know better this week where we stand financially...and plan on forecasting just how long we can stay afloat...not fun...not going to be very pretty. This recent set back from surgery aims to cost us over $1,000.00 and her suggested treatment involves using one of the most expensive chemo medicines available...but I would trade any penny I have and will ever make for her back healthy and home. So many people have helped....and really, have made a great difference....allowed us to have Christmas, some what, and make it through a crazy few weeks. So thankful, and trust, I will get some thank you notes out as soon as I can find the time.
12/24/2012
Melissa got out of ICU today. I spoiled her with more healthy treats and a visit from me and the little man...he really wanted to see his momma.
Melissa got a pick line today, so that will save her many many needle pricks...and allow her to come home a bit earlier on IV antibiotics....maybe Wednesday or Thursday.
I hated to leave her today. I had so much to do and so many more stops, I just could not stay very long today. I plan to visit her on Christmas, of course, delivering a nice chunk of Christmas cheer and some holiday food. I miss her....things just do not seem right without her.
12/23/2012
I watched the Redskins game at my wife's bedside today...silent screams and cheers....a set closer to destiny for them....good stuff....big win.
Melissa was tired....swelling looked worse, but she seemed all there. She is having trouble with her IV lines...so many...so many needles for drawing blood, old IV's from surgery and the hospital stay before that. Plan on talking to the doctors, but imagine there is not much they can do....maybe a main line or something would make her more comfortable.
There is no resting in the ICU...nurses every hour on the hour...various blood tests and medicines throughout the day.
Had our super nurse today....I think having the same nurses is nice....they know what to expect...makes it easier on everyone. Plus, with most neuro patients, personality changes and such need to be noticed...hard to do if you are just meeting the patient for the first time.
I can say, honestly, I am very surprised that a councilor or someone has not been advised to what we are going through....but, all in all, I think we are both fairing well. I worry about her because I know that she wants to be strong around me...we know each other well, I am sure she knows that is what I need. Tough stuff...
She is still not near out of the water on this infection....and will most likely see these antibiotics for some time in hopes they do the job....nobody has warned us of anything, but from what I have read...well, a lot more "wait and see"....hope....hell, it is all you can have, ya know.
I really wanted her home for Christmas....little man is being so good and really, he has proven to me just how tough kids are....envious really. After missing this opportunity at a quality family time, we could really all use something like that after we get her stable and home. Just never enough time....even if you are healthy...never really understood how important every moment is until now.
12/22/2012
Sorry for the delay in updates....just crazy right now. So, her infection is responding to the antibiotics....that means that it is most likely not MRSA....thank goodness. It may still be pretty serious...only time will tell, but at least we got some good news. She is in great spirits....hungry as hell, but seems fine otherwise.
I got our Christmas finished last night....had to wrap it all myself this year....even had to assemble one present for Melissa....and I am no mechanic, but it seems safely constructed anyway. haha....
I would not expect her to get released before Christmas...really upset about that. I just wanted a good family Christmas this year...just have to have that next year I guess....hopefully.
12/21/2012
Today started early...for Melissa, she started having the mother of all headaches about 1am...by 4am we are on our way to the hospital. The hospital was not busy...I was sure the deluxe parking spot I found was illegal somehow....but no, just that damn early.
Turns out she has an infection...not sure exactly what, but this means a stay in the hospital and seems pretty serious....and being they rescheduled her other appointments the day after Christmas, it looks like we may not have Mommy for Christmas day....I know she is upset...I am upset...it just keeps coming and coming. Heads, up, though...the hospital means she will have no choice but to eat better, heal faster, hopefully, and move on to treatment. I have managed to not wig out too much, but we had 4 doctors and 4 nurses in the room at times today....lot's of the word "try" when talking of antibiotics...these guys are aces at these things, I have no doubt, just...wow.
We did get to meet several new doctors today, including her oncologists...both seem sharp and ready to attack this thing. I hope she is as ready as they are.....wow.....talking radiation and chemo. Who expects these things at 31? Wow....just, wow.
I am pretty beat....more updates afternoon tomorrow. Keep praying and sending that positive energy.
12/20/2012
Nice quiet day...meds and daily activities...somewhat normal.
Hard to get her to eat right....but she is making an effort. When all that feels good is to eat, hard to tell her no, but I do it anyway, when I need to.
12/19/2012
Melissa got the staples removed yesterday....was brave about it to...more proud every day. Her reward, besides having the shards of metal removed, was a Firehouse meatball sub (on wheat bread...ya know, so it was healthy and all).
No other news to report...we have two different oncology doctors appointments the day after Christmas, but I expect that will be more an introduction than anything. They will most likely adjust her medications some and schedule a post-op MRI...looking forward to those results...because then we start talking treatment.
I am afraid I spoiled her with a nice bath today.
I am so looking forward to this weekend...for me, the magic of Christmas is starting to take over...do a little conservative shopping this weekend (with the masses, last minute, of course), get the stuff to make Santa his cookies, wrap presents late night, drive to see some Christmas lights, and watching holiday movies with the family.
12/17/2012 - 12/18/2012
Got an email back from the ABTA (American Brain Tumor Association). They are SUCH a great resource...got confirmation of some of the assistance that was mentioned to me over the course of the last week or so. Get to fill out my wife's Social Security Benefits Application....didn't expect that one until a little later in life, but so is life...quick and unpredictable.
Yeah! (drum roll please.....) Melissa administered her own insulin shot today!!! (insert crowd cheers here). Big step! So proud...every day I am more and more proud of her.
Some people have asked how we met each other. I met Melissa like 14+ years ago at a guitar jam/party at a friends house...it was the last place on earth I expected to meet a pretty lady, much less fall in love with one. The person throwing the party, and a few that attended, just don't have the best of luck with women....besides, they were older friends of my parents...it was a long shot, but I woo'd her with just a few tunes. A couple days later, we met up for our first date. I had bummed $20 from my dad to cover taking her out...a tight budget even then. We had a fun night, including me getting ketchup on my shirt (which I do when I am nervous). Long story short, we spent nearly every day together since.
12/16/2012
Sunday was a good day...Redskins win, Melissa had a friend take her for a pedicure, and little man mooched a new Spiderman game from the Grandparents...haha. We also had loads of food, as a friends mom delivered a yummy veggie lasagna, another friend brought meat-balls and veggies, had some pork off my pop's grill....needless to say, we ate real well.
Did some grocery shopping, and for the first time, read every label and bought almost all blood-sugar friendly foods...except for the Pepperridge Farm chocolate cake.
After a thorough cleaning by me and friends, the house is again in destroyed, well, kinda. It does not take long.
Had a friend look at the washing machine...bad motor...not worth fixing, so I am in the market for a washing machine also...on top of all the other things. haha...
As promised, here are a couple pictures...
First...the first MRI:
This is the MRI image I first saw. So scary.
How about the incision and staples:
Did not take the time to count them, but there us a lot. Healing well (this shot was from hospital 3 days after surgery).
I had another with her laying in bed after the surgery, but that did not seem fair to her to post. haha....she actually seems to have a small bit of vanity left...I dare not be the one who takes it away.
What most people lack to realize is that both the medications she is taking, the trauma to her brain, and just the entire messed-up situation has really kept her down some....I mean, they all lead to lack of energy, depression, and lack of motivation...not to mention the trauma from surgery as well...but I just worry about her. Also, this steroid she is getting really old...going to talk to the doctor about that Wednesday. That stuff has many side effects that I fear is giving her grief.
12/15/2012
We all had a better day today. Administered more than my fair share of meds....gonna take a while to get used to that. Having to keep a journal.
Sorry if I worried anyone yesterday....I speak very honestly and straight from the heart....this is a good way for me to vent sometimes...and in doing so, I hope people see how we cope.
Saw some friends today...it was nice. It is great to see some of the faces we have missed....live is so crazy and busy....you blink and you have not seen a friend in years.
Redskins Football tomorrow....can not wait. In all the chaos that comes with this kind of family event, it is the one thing I have held on to....not to mention them playing well....for me, of course....I can claim that, right?
12/14/2012
The morning was again hectic and rough, but little man got to school on time...I got to work late, but I got there.
I am not OK today...nothing anyone or anything to can do about it...I am just not having a good day with things. There are so many things I need to do...then the things I want to do....oh, and then the things I have to do...not to mention the things I SHOULD be able to make time for....and it is all just too much today. I am glad tomorrow is Saturday, though it is destine to be full of brain cancer talk, pills, meds, and more worry. Things were tense this morning, as I hurried to get ready for work, get little man ready, and get my wife her meds....I had to keep telling little man to get ready, getting louder each time....after he got ready, he stood by the back door as I finished stirring my coffee, and just started crying...I asked him "What's wrong buddy?" but knew, that my stress level and actions triggered it...he knew what I was feeling...he answered "I don't know!" in the most pitiful of all voices...I just held him and said "It's ok buddy, I love you." This is going to be so hard on him, regardless of what I can do to shelter him.
My wife actually apologized last night to me...like she has any fault in this. She has nothing, NOTHING, to apologize for....if anything, I should apologize for not being stronger sometimes....for not taking better advantage of each day we have spent together....for not taking her on the vacations she deserved....for not making enough money to stop worrying for just one day....I am the one who is sorry.
Staying positive, but ya know...gosh, it is all so much. You want to think things will be just fine....hell, you NEED to think things will be fine, but how do you do that and plan for what could happen at the same time. Plan for the worst, hope for the best...seems like cheating...bad Ju Ju if you are expecting a miracle.
When I started this blog, it was to have a place for friends and family to keep in touch with things...along with help me with my feelings. What I have found is that some of what I feel is just not right to share with everyone...I do not want to offend anyone. At first, friends "prayers and thoughts" seemed to help, somehow...now I just think of the hoards of prayers that go unanswered and it scares me to death.
With all the mounting bills...the the fact that so many plan on trying to help, it seems selfish for us to Christmas shop for each other....but I so badly want to get her a great present this year. I mean, damn...look at all we are facing...she deserves something magical...not that I have tons of money...haha, just the opposite, but if I did, I should be able to do something special for her, right? See, I am an honest person...I do not expect handouts, nor am I good at asking for help. For me to ask for help, I feel that I should have exhausted all my resources before taking others resources...and that conflicts with what I should be able to do, which is make sure this is the best damn Christmas she has ever had, regardless of this tumor BS. Hell, besides that, I am still scared to spend money, knowing at some point we will be way over our heads. I suppose I will try to get a better grasp on those things this weekend...as I try to pay some things off with what money we have left.
I miss what we had, though....before all this, we did not have much....we did not go out a lot, party, socialize, or have a lot of money....even still, I miss that already. Things seem so different now...so much more thinking, stress, and fear...it is hard to focus or enjoy anything. I think a nice movie night tonight may be just the ticket, though...cuddled up with the family. So much about this is unfair...and frankly, I can not believe any God in any heaven would do this to any loving family, much less us.
12/13/2012
Today was a good day. Met the home healthcare nurse. No problems administering insulin and meds....keeping a journal of everything she takes and blood sugar.
Plan on doing some research on support organizations for these things tomorrow....breaking research and stuff.
I think she is still kind of numb...not upset, but just still in shock. She was in good spirits...and ate responsibly today....I was proud again. Her blood sugar was probably better than mine.
Many friends are worried about me...I can tell you, I am better today. I realized that there is no reason to get crazy upset right now...I mean, of course I am damn near heartbroken and right confused about what we can do, but there will be much harder days ahead, under the best of circumstances....this will probably be our best days...our best Christmas, and I plan on enjoying it with my family, regardless of any random ass bull shit that is tossed at me. No nice way to put it, is suppose.
My employer and coworkers have been so understanding...our entire life has been put in a blender, and they have understood...priceless...that is why it is worth working for people who care. Don't plan on pushing my luck, though....haha....just have to work out the kinks in our new lifestyle and schedules.
For those interested in the technical stuff, her tumor is a Grade 3 Astrocytoma....now, a lot depends on what is left of the tumor, what it is close too, and how that can be treated....we could still be surprised with the surgery....as he could have gotten more than he realized. We will just have to wait, again, for an MRI....a week or so. So, effectively it seems all aspects of treatment work in weeks...so I will take that a week a time. haha....take the rest a day at a time....ok, that is more confusing...who knows?
Having her home has made a real difference in her attentiveness, though she has some disturbing swelling over center area, surrounded by the incision...the nurse thought it was normal...but if it gets worse, I will have to call the doctors.
12/12/2012
Happy 12 12 12! We are awaiting insulin and diabetes training...doubt anyone could keep Melissa from leaving this afternoon. We are all ready to be home.
Little man has been so good through all of this...even got good marks at his first day back...my man! Came home yesterday sporting a vintage Doug Williams sweat shirt....something my mom saved from my childhood...too cool.
Suppose we will go out and do some special grocery shopping tonight...gotta eat right! Good eating leads to less insulin shots.
I expect I will be forced to watch Magic Mike tonight....oh well, anything for my sweetie...as long as we are home, whatever.
Surprise early return, or late if you counted the first two times it should have came back....grade three tumor of astrocytes....there is no cure or treatment that will ever heal her of fix her completely....the big question, how long does she have.....well, lots of variables, but three to five years.....I am beyond fucking upset with things, though, Melissa seems to not even want to listen or understand things....didn't even listen to the doctor, was more worried about the tiny insulin needle. Never enough time, ya know....we have a son who will have lost two mothers before he even grows up. Now the real fun begins in a rally to save her life....travels, trials, costs that we can not afford nor can afford not to try.
She was passed out when I retuned from going to the car to brake down. I plan on being the best damn healthcare assistant/husband I can be for as long as I have a chance to be....we have to beat this. My only worry is that she does not currently seem to be up to the fight ahead. I think tIme, oh and the plethora of doctors we will face, that may cause this to sink in. Maybe seeing our beautiful son will be all the motivation she needs. I know I am beside myself....surreal this is even continuing to happen to us....knowing is not always better if it is too late. Now, more than ever, I need that miracle....that divine intervention, to come and wipe away these horrors we face. Only thing I can say is this is not the result of something, but a completely random occurrence....not because of lifestyle or weight....not due to drinking or smoking....just a messed up random thing that is now ours.
You would think I had the tumor....I wish I could though. If allowed to trade my life for hers, I would do it in a second. I can't fight this for her, I can only help.....but if I could I would, without hesitation. No one deserves this....it is worse than a car accident or a heart attack. I feel so bad for the friends, family, and loved ones who have and will share in this.
By no means am I giving up...I went back and read my writing, and I did not want anyone to think that....though, I will need everyone's help to make sure Melissa never gives up.
So before we could leave the hospital, Melissa needed to give herself an insulin shot...and well, that was awful...though she handles needles well, she does not handle administering them. This will be a journey....5 shots a days worth.
The cost of her medicines was a shock to the wallet. No choice though, can't skimp on the meds.
12/11/2012
Turns out going home was more work than relaxation. Found our heat pump making a noise and the washing machine broke. I needed more to worry about, ya know. Haha, what can ya do?
I showed up to the hospital to find a less than responsive Melissa....probably did not get much rest last night. She is getting her fair share on insulin shots too, which I am going to guess is contributing to her lack of energy, as her blood sugar surges up and down. I think they could choose better times to check her blood sugar, but I am no doctor.
Speaking of doctors, we are awaiting word from our neurosurgeon in regard to pathology and if other forms of treatment are necessary....I sure hope this is almost over.....Melissa really deserves some positive news.
Nutritionist came by to discuss diet...heart healthy low carb....oh boy. I knew that was coming....but, probably well past due at our house anyway. I have to do some grocery shopping.
I did not have time to post the pictures or check Facebook yesterday, but I will soon. Had some pre-hospital-release cleaning to do...luckily, a friend is sitting at the laundry mat for me now....another is working on the house.
I am preparing for what's hopefully my last hospital meal. Wish me luck.
Ok, I think I have been pretty easy to get along with, but now I am pissed...still no pathology results....nor hope of seeing our doctor until next week....I mean really, I am watching my wife so depressed and tired she refuses to do little more than sleep and eat, and we have to wait even longer....I was sure the first class treatment would wear out eventually. Jeez....going home with scars and absolutely no flipping answers.
House is ready and waiting....and we are still waiting for diabetes training....this condition is a side effect of the medication she is on, not a permanent thing, or at least that is what I was told. They are arranging a home healthcare nurse to check on her also....which puts me slightly more at ease....slightly.
It is officially two weeks to Christmas....I wish the onslaught of BS lightens up some so when can feel some Christmas magic....need it more than ever this year.
To add to matters, because one diabetes person did not make time for us today, I get to figure out how to work out her leaving mid day tomorrow....which results in more time off work....more strain on family member....more expenses....I am very upset. I feel like someone here dropped the ball and of course, the patient and family pay. My son will be very upset.
She should be released tomorrow around lunch time. Our next appointment will be next Wednesday....pathology results and staples out.
12/10/2012
Nice, quiet morning. Melissa is more stable on her feet today...took a decent walk.
OT lady describe many of the things they do not want her to do, including lifting heavy weight, bending over, or driving. Not sure when those restrictions lighten up. She also said she needed some supervision...that being alone was not a great idea....gonna have to trap into some friends to assist when we get home...I am beyond both wanting and needing to return to work. My work, and hers for that matter, have been pretty awesome through this. The boss that always seemed to railroad Melissa, who I hindsight was experience tumor symptoms, turned out to have a heart of gold after all, having experienced more than her fair share of hospitals with loved ones. My work has not asked questions and has given me the space I need to take care of my wife....I can not thank them enough, but know they do need me working. My boss might be kind of a difficult guy at times, he understands the need to take care of family, as time like this hopefully do not last forever.
I worry about some of the symptoms I can still see in her....lack of motivation, lack of desire to do things, besides go home....slight confusion and memory issues at times....problems focusing to read and watch tv....still strong as a svelt ox, she is, though....
Yes, Mr. Tom Petty, the waiting is the hardest part....this afternoon we should see our surgeon, hopefully with some great news. Anything short of that would be a hard blow to an already messed up situation.
No pathology results today...maybe tomorrow. Looks like they are aiming to release her tomorrow....no idea of time, but at least we can plan some. I have so much to do to get the house ready....laundry, cleaning, staging furniture, washing the dog, and more....so looks like I may be headed home tonight to get started....probably means I can not work again tomorrow, but does mean I can get back to a somewhat normal routine Wednesday....looking forward to that. I know my son is ready to get home as well.
12/9/2012
A nice quiet morning. The swelling on Melissa's eye went down. She still has a irritating IV and is ow getting several insulin shots a day...couple at a time. This is only temporary, but does worry me and make me hope the steroids causing the issue will soon be reduced or removed from battery of meds.
She is still kind of unsteady on her feet....so no walking around or getting out of bed without help. She still needs me for a while...but is getting stronger every day. Can't say this hospital stay has been easy on me...but she has no one else and I know she would prefer me over anyone else anyway.
Little man is scheduled to visit this afternoon sometime....he will be happy to see his mommy...though she still has a massive bandage and black eye from hell, doubt he even pays it much mind, besides wanting to kiss her boo boos.
Redskins football via hospital room today! Hope no one is sleeping on this wing....cuz I like to participate while I watch the game.
Well, I was not allowed to get be so loud, though I was certainly screaming at times....But my Redskins did manage to win today.
Melissa got her first warm shower spray today....she had sponge baths before, but it just does not compare to a good hot water shower.
Got our super sweet nurse back tonight. We have had many great nurses....but something is special about her.
Both the anticipation and fear about the pathology results is mounting....another round of prayers and thoughts are in order....yet another D Day for us.
I will be so glad to agent back home...back to routine....he'll, even my little man begged to go home today...and he never wants to leave his grandma and papa's.
They have a nice coffee pot on this wing...wonder if someone is stashing a coffee grinder around here? Got some nice Starbucks coffee in the car. Ya know, I an sure some medical device could grind coffee...though it might kinda be weird.
I will update tomorrow and thought this ordeal until given a completely clear bill of health. I also have pictures that will be posted as soon as I get home.
12/8/2012
So, I was evicted from my precious recliner so Melissa could get out of the bed for a while....thus the 6:35am update.
It also seems that the night nurses all seem to be aware of my gas last nigh, as I slept....I suppose Melissa shouldn't be the only one to lose a little vanity.
We had a sweet nurse overnight....shared a k-cup coffee with me this morning....after the embarrassing waking, as Melissa yelled at me for my gas, I suppose I needed a treat. Haha....dang Quiznos.
Played Pandora, set to Counting Crows, but had to wait through a short tour of crappy 90's tunes...Oasis, Wallflowers, Cranberries....and then what I asked for.
When something like this happens to most people it is catastrophic....for us it is about that bad. Friends, family, heck, even people we don't even know have reached out to help. It will be a long time before this is over for us, but it makes any road we face brighter and easier knowing so many people are there to help us. I will never be able to pay people back....I can't possibly thank anyone who has helped enough. With so much to worry about, it is nice to know we are not alone in this battle.
We are out of ICU....feels like a big step....shower....nice room....private bathroom....very cool. Hope her eye swelling goes down by tomorrow....that would motivate her to walk more. This new room is welcome to visitors, as well....has like 5 chairs...flat screen LCD had tv....iPod doc and stereo junk...that's enough for a party!
12/7/2012
This morning she gets to eat real food again...and that will make her really happy. Nurses noticed her left eye, the one under the most pressure, still is effected by some swelling.
I can not tell you how nice it is to have a conversation with her...share a laugh...no matter who in surrounded myself with, I was still missing her....and I know for me and my dad, just hearing her talk and seeing that the Melissa when know and love is still right there....just with a nice head wound and nasty disposition to pesky nurses.
The brain drain, which would also b a great band name, may come out today, which has to happen before we get out of icu.
The recliner they found me yesterday may have just extended my life expectancy....as sleeping in two chairs pushed together was surely shortening it.
I can tell you for sure, this entire surgery and post op was well more serious than we expected. Just did not think about the drains, hoses, IVs, immobility, helplessness, limited diet, ETC.
For me, sometimes I wish I was at work...haha....it is so much easier then what I am currently dealing with....though getting to eat out, thanks to my pops and a good friend, has been nice. Johnny Rockets is pretty yummy....the hooter up her was pretty crummy, but food was ok. Jimmie Johns today for lunch as long as Melissa does good with breakfast.
I need to find time to do my redskins posts....they have really helped brighten my mood....almost feels like they are winning because they just know I need it.
The brain drain was removed....one step closer to getting out of bed. Pain in the jaw is giving her grief...along with the right eye but still progressing well.
I found a Quiznos, Starbucks, and Sweet Frog side by side by side....this was a sign from above...one I certainly noticed and responded to. Sub and coffee for me...frozen yogurt for my lady.
Her eye is swollen today like she talked shit to Mike Tyson....I took a picture but I am not about to lose all these brownie points posting it.
The catheter and brain drain are out...she is having to get out of the bed to potty....though not easy for her, it is so gratifying to her. Oh, the little things.
12/6/2012
She seems to be doing pretty well. Not used to my baby having tubes and hoses hooked to her but she has been awake a few times and everything motor skills wise is working so far....still a ways from walking around though, which could extend her stay some. We will see how thing go today. Nurses are nice, even though she is kinda grumpy from getting checked every hour on the hour.
Ok...it is official....I love the ipad.
Gonna play Melissa some music...try to stir her up some.
The music was the the ticket! She has been lucid and awake a good part of today...talked on the phone...even got up and sat in chair for a minute or so. I am so proud of her. Diner time! She is on a light fluid diet....she is not happy but dealing....Jimmy Johns is her reward....maybe by diner tomorrow.
12/5/2012
Winning...free hospital WiFi!
Melissa is having it rough....no one tells her not to eat and gets away with it. She just went back to meet the first on many doctors today.
We are Traveling like gypsies....toting bags of stuff everywhere...more in the car.
She is back for the stealth MRI.
Surgery is on schedule...she is off to see the wizard. Game time...now the waiting really begins. I will post updates when I get them from the nurses.
Got my first update...procedure underway...stable. Be about an hour before the next update.
It is now almost 6 and there has not been a second update...so I should have some news soon.
6:20. I just got an update....stable...did good....closing. 45 min or so left then the doctor comes out.
7:30. She is out and stable...working on waking her now....but surgery is done. They got most of it....looked like brain cells which is good. Now we wait for pathology....probably monday. They seemed concerned they did not get all of it....but if pathology comes back benign and lower grade, the worst could be over. If it grades higher or malignant, she may need radiation or chemo.....so please keep the thoughts and prayers coming. She may still need therapy or have side effects of the major brain surgery she just survived....only the next day and on will tell.
12/4/2012
So, the Redskins pulled it off last night. Sorry if I got people worried with my frustrated posts yesterday...when it rains, it pours...and brother, it was pouring.
Melissa got her hair cut yesterday....good friend came by and Mohawk'ed my woman...and I have to say, it is cute. How often does a woman get a chance to do something crazy like that with their hair? She plans on spiking it up before errands today.
My brother and his wife brought some turkey noodle soup by...special stuff.
Later today I will take her to get some crafty items to help pass the time at the hospital. Borrowing a lap-top and I-pad as well...should also help pass the time. Wonder if they have WiFi?
Can not help but be scared...but the confidence of the doctors is comforting.
I will be updating randomly tomorrow...forgive typos and such...going to be a wild one.
12/3/2012
Tonight is the BIG FOOTBALL game, Redskins vs Giants, but besides that, it is a typical Monday. Call me a sap, but I like Christmas music. A local station had a local artist on, singing a song she wrote, Melancholy Christmas. Words hit close to home. Singing Here Comes Santa Claus with my little man was the highlight of the drive to daycare this morning. Today is "hair cut day" for Melissa...she decided to have a friend cut her hair prior to going in Wednesday. I am kinda excited about it, though, I do love her long hair. Maybe there will be a miracle and it will grow back the rich red she has always wanted.
Little man did not make it through the school day. He is running a decent fever with little other symptoms, but either way, we can NOT afford for Melissa to get sick because it could delay her surgery. If I get sick, I may not be allowed into ICU...and may also have to stay away from my wife. Just my luck...which, in case you have not figured it out yet, is absolutely non-existent. I really can't take more of this.
So little man got even more time out of school...headed to to stay with his other Other Grandparents...where he will be during the surgery ordeal....which happens to be close to the hospital.
The Redskins better win tonight.
12/2/2012
Today we woke to a sick little one....got me worried Melissa will get ill before surgery. Also, my Walmart live tree is shedding....a lot. haha....but still looks great, if I do say so myself. I took Melissa to the store to shop for the hospital....compliments of my aunt. I can't thank everyone enough for the support and thoughts. An former coworker and friend of the family brought dinner...THE comfort food, meatloaf, tators, carrots and gravy....and it really hit the spot. The visitors around the house have been nice....though, I wish I kept a cleaner place now. haha...with a 5 yo and a dog, it could definitely be worse. Talked to our son about the surgery....well, "the boo boo" and let him know that mama was going to cut her hair...he didn't miss a beat....seemed more worried about when Santa was coming than anything...and that is all I want him to be worried about right now.
I have had many compliments on my writing. I am afraid this blog post tends to be more of a scattered assembly of thoughts, while my Redskins talk is more focused....it is still hard to wrap my mind around things. It is easy to focus on my Redskins.
12/1/2012
Little man had a good day....got to meet a new puppy of his Sissy's....Grandma took him to the Christmas Parade. We got our Christmas Tree today, thanks to friends of the family....got it all decked out....even spread some holiday cheer to the crummy wooden rail on the front porch. First time I have ever had to decorate without Melissa. Had to relocated and reassemble my Redskins shrine of good Ju Ju memorabilia. Symptoms were present today, more than ever. Mood swings, loss of balance, lack of energy....scary. Not sure if it is meds, tumor, the entire situation, or a combination of all of the above....but I am just trying to remember the situation and work through it. I wore thin a few times, but the enchaladas from my brother and his wife were pretty incredible....and mix that with a little late night boxing and poof, out in my chair by 10....just like any other night.
11/30/2012
We are not the kind of people who take handouts...we are not the kind of people who expect people to do for us...we do for ourselves...with that said, I have to say thank you to the outpouring of love and support I have witnessed so far. It is hard for me, and especially my wife, to face and thank the ones who have offered financial and emotional support....but know, we thank you ALL. I really can't put a price on how great it is to tell my wife that she does not have to worry about us losing our house or car over this....and for her to know that things will be ok is priceless to her and our family in general. Frankly, things would not have been ok without help, or else I would have refused it.
I also want everyone to know she has the best team of doctors I have ever met. I am not sure if you can call it luck or fate, but we have a great team of surgeons, nurses, and hospital staff that will be making this as comfortable and as "painless" as possible. First and foremost, I have to think our PCP Dr. Steele...if not for him, well, this could have been well worse. Dr. Sahni and Dr. Geckle seem to be incredibly well trained and experienced...just nice guys...and have an incredible staff of smart and capable people. They all work long, hard hours with complicated patients and disorders/problems to treat...and for them to find room for us, now, not later, is incredible. I think I am, for the first time, truly realizing things will be fine...she will be fine....our family will be fine....and everyone, doctors, family, friends, the Redskins, Redskins Nation of fans...they all have been so great. I just can't thank people enough. Still many hard, long days ahead, but with this much support, love, and help there is no question, we will be ok. Got a few bills paid today too...the other bills were very jealous. haha. I played my guitar some tonight....seemed like it had been a while. Surprised how quick I remembered songs....then saw so many parallels between them and what is going on....I know way to many blues songs.
I also want everyone to know she has the best team of doctors I have ever met. I am not sure if you can call it luck or fate, but we have a great team of surgeons, nurses, and hospital staff that will be making this as comfortable and as "painless" as possible. First and foremost, I have to think our PCP Dr. Steele...if not for him, well, this could have been well worse. Dr. Sahni and Dr. Geckle seem to be incredibly well trained and experienced...just nice guys...and have an incredible staff of smart and capable people. They all work long, hard hours with complicated patients and disorders/problems to treat...and for them to find room for us, now, not later, is incredible. I think I am, for the first time, truly realizing things will be fine...she will be fine....our family will be fine....and everyone, doctors, family, friends, the Redskins, Redskins Nation of fans...they all have been so great. I just can't thank people enough. Still many hard, long days ahead, but with this much support, love, and help there is no question, we will be ok. Got a few bills paid today too...the other bills were very jealous. haha. I played my guitar some tonight....seemed like it had been a while. Surprised how quick I remembered songs....then saw so many parallels between them and what is going on....I know way to many blues songs.
11/29/2012
So things are kinda going back to normal...until next week. The "calm before the storm" if you will. My wife has noticed decreased energy today...stiff legs and a bit of slurred speech...but other than that, today is pretty close to normal. Some people might bitch and complain about monotony...and I think I did myself before all this...now, it is like a comfortable pair of slippers. Just gonna be nice to pick up our son and dinner and head home, like any other day. I would have preferred to spend my time with my wife, as opposed to going back to work, but I suppose bills will not slow down....as a matter of fact, it has become another worry....co-pays and expenses are mounting. God knows what the surgery will bring us in bills. I have good insurance, but often, for us real, week-to-week Americans, it does not take much to "sink our ship" financially. I would do anything for my baby, though...and she is all that matters right now.
I am looking forward to our weekend together, as a family. Probably get the house in order...get a Christmas tree and decorate. Little man will love that. Might be a few weeks, or months, before my wife will be able to do these things again. I think we both worry about how our son handles this thing, more than how we will handle this thing. He has experienced so much at such an early age. Good thing here is that his mommy is a fighter...and really, as bad as it sounds, I just know she is going to be fine. You can tell doctors feel that same way.
We got the call today...surgery next Wednesday, December 5th. 4-6hr brain surgery...yowzwah! Things will be fine...but YOWZWAH! Every step, things become more and more real.
11/28/2012
Got our son to school and ran back up to the hospital, after a series of errands. Today we get some answers. By the time I arrived it was time for yet another MRI before finding out what course of treatment will be suggested. I brought a arsenal of coloring books, puzzle books, electronics, and clothes...anything I thought would keep her occupied and comfortable. What the tumor wants, the tumor gets! It was a long day...due to her risk high of seizure, they would not let my wife off the floor...and she was going stir crazy...not to mention, just wanted a cigarette. Besides being a long day...this entire thing, from Monday morning on, is fuzzy...this is happening so fast. So many more questions than answers. Since she can't smoke, or leave (for that matter), I was sent on a mission for playing cards and an electronic cigarette. When I came back, I had just missed the doctor again. This time, he was sure she needed surgery...not a root-canal, but open friggen brain surgery. The tumor's the size of a tennis ball, taking up most of the right-front lobe of her brain. Jeez...really, brain surgery? So, no real choices...and besides that, time seems to be of the essence. She can no longer drive or work....which we kind of expected, due to seizure risk. Later we met the surgeon, asked for all the gory details, and was discharged to go home. She now has more pills than an elderly person to take. Not sure what we will do financially, as rent, car and other bills are coming due, not to mention Christmas...though, my 1st and greatest concern is about my wife. As long is she is ok, I could care less about my car, or home....her alive and well is worth the world to me...it is ALL I WANT for Christmas.
11/27/2012
So today we travel to Johnston Willis to meet with a neurosurgeon. Still surreal...this can not be happening, right? Our directions were crummy...I knew where the hospital was, but there were multiple buildings...multiple entrances...but eventually, after much tromping about the campus, we found where we needed to be. Things began to take shape...to feel real, as we waited for the unknown. Others in the waiting room sported massive head scars, limps, inability to walk/talk/see...I knew we were looking a room full of people lucky to be alive, I guess. Question in my mind was, ARE we going to be one of these people?
After some waiting, we got in to the neuroscience department for our first meeting with the doctor. His nurse ran some basic tests, she said "Seeing how your brain works"...she tested fine, much to the surprise of the nurse. She even spun around, wobbled a bit and the nurse all but dived to catch her. Her doctors were amazed she had not had any seizures, no other symptoms than the head-aches and dizziness that led her to the doctor in the first place. The doctor needed more tests and to administer IV medicine, so she was admitted. Our first hospital stay with the "alien" (which my wife has began to call her tumor). You have to be able to have a sense of humor when you or a loved ones life hangs in the balance with any and all resolution unknown. We still have no real answers....but I am beginning to feel she has been lucky...well, kinda...lucky to have not had more problems...tumor, eh, not so lucky. I went downstairs for something, and when I returned I found I had missed her doctor visiting the room. He mentioned that he did not think it was cancer and that he was unsure if surgery would be needed. Good news? I got her settled, as much as possible...it was late...time to head home and get my boy ready for bed. Not looking forward to explaining this situation to a 5yo, but if all goes as well as we expect, it will just be a scary thing he will not remember.
11/26/2012
So today, what started as a routine procedure and a MRI to "Rule Out" the bad stuff ended in doctors finding a massive tumor in the right frontal lobe of my wife's brain.
I am still in shock....images of the worst of what could happen are in a constant rotation with the memories of the best moments, flashing through my mind. I can not concentrate. I have to be strong for her. I love her so much. True love, ya know...the real deal. What really gets me shaking and choking-up is thinking of how our son would handle the worst....but not going there....nope, stay positive, right?
These things are not suppose to happen to us....these things happen other people...in movies and TV shows...but to us, at Christmas....Why?
Doctors today are referring us to a great neurosurgeon for 1st thing in the morning.
If one more person tells me "God has a plan" or "God would never give you more than you can handle"...I swear, not sure what I will do. This is part of no plan....and sometimes, the world is more than one can handle...I don't want pity....I want my healthy family back.
Anyway, I had to put some feelings somewhere...so, what else to do but to talk to my blog? So, I will update this blog with info...as it becomes available. Not sure when I will post this to the public.
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