3/28/2013

Me and Melissa got to spend the majority of the day together.  Not crazy about how things went with SSD....I was told by multiple sources that there was no waiting period for her condition....yet they insist there is a 5 month waiting period, though, it goes back to December to start.  Not sure what you can do anyway....though it means loosing thousands of precious dollars, those would be turned over to a lawyer if we went that route.  Suppose we will just see if she is even approved before exploring that.  The system is quite disgusting, actually.  To think, if I could have just banked all the money we paid in SSI/SSD, we would have a small fortune.  Oh well....slaves to the man....what can you do?

After that, we traveled up for her treatment....followed by a indulgent treat....Cheeburger Cheeburger.....OMG.  So good...and affordable.

Won a pile of lottery tickets on the radio....$19 in winnings for $50 in tickets.  THAT is why I do not waste money on Lotto...not sure I trust our luck too much anyway.  At least it covered lunch.

Here it is....

Cancer Battle Hawk...ready for action!  haha....the angle is funny....makes her look conehead-ish....that thing is round....got a few more notches in it these days....custom work...but round.  Her scar is uncovered...but kind of looks cool.  I am sure some dude out there has a scar tattoo on the side of his head.  I would post more pictures, but this is the one "Melissa Approved" pic....I only post approved shots...for my own well being.

3/26/2013 & 3/27/2013

Treatment is still chugging along.  The end of treatment is closing in.  Pretty happy about that...I know Melissa is too.  After missing Christmas, she has focused on Easter....which little man will greatly benefit from.  Great thing about little kids is that you can spoil them with far less money.  Not sure what is on schedule for Easter yet, but I am sure little man will clean up.

Melissa's hair is driving both of us crazy....has to go.  Mohawk, anyone?

3/25/2013

Sunday delivered some snow, prompting schools to be closed today.  Roads were fine by this morning...but yesterday (Sunday afternoon) this is what they looked like...

Quite a sight, especially since this was expected to be a "mainly rain event".  Not complaining though, I love snow.  We never seem to get quite enough for good sledding, not that I personally want to sled, but it would be nice to show Michael the Snow-Hill in Walnut Hill.  By morning, the roads were clear, dry in some spots, and by the end of today the snow was gone.

The weather did not, however, effect Melissa's treatment schedule...thankfully.  She is well ready for this to be over....and honestly, I will be very glad when I have my perky, happy wife back.  In case you haven't heard, Cancer Sucks!

3/23/2013 & 3/24/2013

It there was ever a weekend that was referred to as a "lazy weekend", this was it.  I managed to sluggishly do some dishes and cleaning up...but the majority of the weekend was spent sitting around, watching movies and TV, napping, and little to nothing....which was all Melissa was interested in this weekend (besides food).  Tweaked out on steroids, Melissa has not been able to sleep well, despite the pain medication, sleeping aides, and any other holistic trick we could find (within legal means).  She was explaining to me how she feels....unsettled, anxious, and constantly hungry but seldom satisfied.  She is beyond wanting all this cancer crap to be over.

A little over a week from now, Melissa will be finished with radiation treatments.  I know she is eager to get back to some normalcy...right now, she has little energy to do much but can not sleep either.

It is hard to keep cancer from running your life....by that, I mean, it is hard for it not to be the focus of every action...it is hard for it not to be the thing everything else works around.  For her, I know she wants nothing more than her average health, crappy job, and mediocre way of life back...something either of us would have been happy to bitch about a year ago.  All I know is that, after all of this, she deserves a break...preferably one with sun, sand, and tropical breezes... margaritas by the sea anyone?

03/22/2013

I am not the kind of person who demands respect at every interaction with people.  We all know those kind of people.  As a matter of fact, with people I know, meet, or work for/with, I earn the respect I receive.  When disrespected randomly by people I do not know, I tend to laugh, but make sure they know I recognize disrespect and perhaps, I do give them back a touch, in return (of course).  Yesterday, I had such an exchange...though this time I was the "customer"....without going into detail, let's say I received sub-par customer service and a big F-bomb delivered to me at the end of the call.  I hung up saying, "did he just say?....no."  This morning it got worse.  I try not to talk about work on my blog, but let's just say somehow the story was reversed and my accounts, and those of other 3 witnesses, where not even listened to.  So, in light of that, I leave you with this....

"This world of ours must avoid becoming a community of dreadful fear and hate, and be, instead, a confederation of mutual trust and respect."  President Dwight D. Eisenhower

I refuse to hate...with that said, you can loose my trust and respect...and there is no guarantee that you will have a chance, or even enough time, to earn it back.

Thank the Lord the weekend is closing in.

03/21/2013

Despite a valiant effort on my part, I was unable to talk my wife and kid into watching the Hobbit with me.  After the first hour, I thought it to be worth watching.  By the end, I was left feeling like, uh, well not much at all.  It was not near as interesting or as polarizing as the first three movies...or even the animated version of this one.  The scenery, costume, and even characters were well done, but it is like the story was stretched a bit thin for the 3 hours (or maybe less) time slot it had to fill.  It was, in short "Uh...ah...whatever".  Long story short, wife and kid made a good call.....should have just watched Greys.

Melissa had her sleeping meds upped today....let us see how that does.

03/20/2013

Melissa is still having a lot of trouble sleeping.  Though I am not crazy about sleep aiding medications, I think it is obvious that the one she is taking has little to no effect helping her get to sleep.

This has been a long week for I think everyone in the house.  I would go into further detail, but it is such a hodge-podge collection of the usual woes....work, house, healthy....everyone knows the tune.  Bring on the freaking weekend, already!

3/19/2013

I have a LOT of dedicated readers.  My blog has almost 80 readers a day.  Of these "Readers" includes many friends, family, and loved ones.  It is very reassuring to get so much positive feedback on the blog.  Even my wife tells me she is impressed by it.  I have a passion for writing, but the free-time and education of a smart, but occupied working man.  Maybe one day I will find a way for my passion to also be my income, but for now, I am happy to get some experience writing and a platform to share information with the people who care about us.  I would like to say thanks to all of my readers....this blog would not be near as fun (and perhaps even a bit awkward) if I were the only one paying it any attention.

Today, we had dinner at my parents.  Melissa's special request, Chicken and Dumplings.  Fine choice, if I do say so myself.  My parents were happy to oblige. 

Little man is still learning what and what not to say.  I would explain, but let's just say he got into a little bit of trouble trying to use a popular saying but by not using it properly...no curse words or anything, just a spoof of words.  The teacher was nice, but I could tell she was far more alarmed then need be.  Needless to say, I talked to little man and ironed out some words and saying to just avoid.  The entire event, though, caused me to realize a shocking similarity between kindergarten age kids and foreigners.  Of course, they both would likely use words improperly or say something awkward, sometimes with shocking honesty.  The similarity continues when either see new things, like huge buildings or new movies.  Both would have limited knowledge of some celebrities.  Neither would likely be familiar with the daily practices of most Americans, the structure/operations of our government, or many other complicated operations.  Both would likely respond similarly to popular music.  Both may even dress similar at times.  I could keep going.  Of course, I should mention that I do not point this similarity to offend either party...I just found it funny as hell.

3/14/2013 - 3/15/2013 - 3/16/2013 - 3/17/2013

A friend finally called me Saturday and asked, "You ok?  What's up with the blog?"

Answer....Norovirus.  Not just any stomach bug...a super bug of intestinal destruction.  I will spare most of you the nasty details, but know this, you never want to catch this thing.  Never.

So, here is a recap update....

3/14/2013 - At 3 am I am forced out of bed with what turns out to be the beginnings of the Norovirus of intestinal destruction.  By 6 am, I was in no shape to do anything....no work or play...just Norovirus all day.  Melissa and midget, though, felt just fine.  Bit of a role-reversal for me and Melissa...she had to take care of me.

3/15/2013 - 24 hrs with no food...and I don't want a bite of anything....just my normal digestive operations back please.  Today midget and Melissa vacated the house....can't blame them....looks and smells like a college frat house around here.  Found out today another friend had it earlier in the week....ended up in the hospital.  Shame....sick, at home, and I can't even muster enough energy or peaceful time to play Madden.  THAT is sick, my friends.

3/16/2013 - Going into day three with one expectation, beating and getting over this stomach disaster.  One good sign, I could drink my morning coffee.  Still some "issues" there with frequency, if you know what I mean, but hey, getting there.  Melissa went shopping today with friends....not for anything really, just to get out of the house....she was a bit overwhelmed by the amount of people out.

3/18/2013

Did I mention how much I love Mondays....um, not.  Unlike others, though, I face this one with a new found appreciation for life after my bout with the wretched Norovirus.

Melissa had a nasty head ache today, leading to an increase in the dreaded steroids.  This will likely be followed by a return to insulin and needles too, but, we can handle that as long as it is not for ever.  She only has a few weeks of treatment left (at least, the radiation aspect of it).  The chemo pill will continue for at least another 10 months or so.  After the radiation stops, she should be able to get off the steroids and several other medications.

The fundraiser is still going on (look in the top right corner on this page)....we need people to share this link, donate, email it around....help spread the word.  I am leaning on this fundraiser to go towards a good chunk of the medical bills, which are going to be larger then even previously expected.  You can give as little or as much as you want....you can declare your donation was from you or send it anonymously.  Every penny helps!  It is a real shame that Cancer can take the life of a love one, it should never be allowed to take your credit rating, money, car, and financial health as well....and trust me, great health coverage and saving combined will not prepare you for Cancer.

3/13/2013

Nice, quiet day.  I should have know something was up...haha....you will understand by the next post for sure.

Melissa is loosing some hair on her right side...pretty noticeable...but it does motivate for a hair-cut change and return of the battle hawk....battle hawk 2.0!  I would rock one too if I was not physically challenged with male pattern baldness.  Not so bad, though, no pesky bangs!  It is like having an inverted mohawk.

Met a nice guy on a Facebook cancer support group...very similar story to Melissa's...healthy and living 3 years after treatment.  Good story, nice guy.  Go Mike!

3/12/2013

Melissa is now battling a stomach bug that actually put midget down for the count this past weekend.  She is still pretty miserable, but kind of coming out of it now.  Lets hope we can make it through the bulk of the remaining treatments without more issues.

So, someone asked me today what the worst part of all this brain cancer crap?  Wow....tough question.  No way I could 100% say what the worse part of it is....frankly, I hope it is just the cost of the cure.  Of course, I never every expected to risk loosing the woman I love before growing very old and grumpy together, first.  I never expected the drama that comes with any kind of Cancer diagnosis.  Though our doctors are ok, I do not like spending this much time with them.  Waiting rooms and treatments centers...ER's and such....no thank you.  The bills are crazy too....I mean, even with good insurance, expect 3-5K a year in costs, on top of premiums...add in her not being able to work, and you have a financial nightmare.  I suppose, though, the worst part for me is something I hope I never have to do...tell my son that his mommy is gone.  He came to live with us after his biological mother died...he was 1 year old.  Though I did give a lot of though into whether to be his dad (which, now I have no idea why I hesitated), since the first day he came to live with us I never looked back and neither has Melissa....he is our son 100%.  He is a child with a heart cast of 100% pure gold, for him to loose two moms in one lifetime, well, it just can't happen, right?  No way the big man upstairs would let that go down.  THAT would be the worst part....the rest of this shit is no problem compared to that.

3/11/2013

Little man has seemingly made a full recovery.  He was happy to return to school too.  Melissa, on the other hand, has now caught little man's stomach bug.  Just more for her plate, like she needed more to deal with.  Jeez....I just hope it clears up soon.

Little man insisted on Subway for diner.  On the way, out of the blue, he says "I wish momma wasn't sick anymore"....like to have lost it, but calmly said, "Yeah, me too buddy."  What else do you say?  I refuse to lie to him and tell him that things will be ok....who knows how things will turn out.  Wow, cancer sucks.

3/9/2013 & 3/10/2013

I am pretty sure when the 5-day work week was thought through, it was the intention the architects for the weekend days to be a time of catching up with the house & yard, relaxing some, and spending some quality family time.  What I had this weekend was almost the exact opposite.  I did manage to wash every dish in my house yet again, for the second weekend in a row, but besides that, little more than frustration and agitation occurred for me.  I did get another nice gift from the Parham's Shell guys...but besides that my weekend involved a very sick little guy along side a very grumpy and sick wife.  No rest for the weary...I was up at 5am something Saturday and 6am something Sunday.  Saturday I had to take Melissa to Patient First....what we thought was strep-throat turned out to be Thrush, caused by her depleted immune system (which has been ravaged by radiation, chemotherapy, and the huge amounts of antibiotics which saved her life after surgery).  It is basically a sore throat from hell.  Melissa does not feel good.  I know she is frustrated about not working, feeling sick, the constant doctors BS, being broke, and only desires a few things....a vacation and a enough "feel-good" days to enjoy it....neither of which seem to be "in the cards" for us.  I neither have the time off or the money to do much of anything.  It is so hard for her to stay positive and upbeat when things just keep knocking you down.  See, Cancer does not just destroy your body or health, it seeks to destroys your finances, marriage/love life, family dynamic, your will to survive and your every desire, leaving you sick, penniless, and broken in almost every way possible, that is, if cancer has it's way.  For us, we have found some solace in some of the help we have received...and perhaps one of the many non-profits I have reached out to will help with a vacation or something...but these days, I have learned just to not get my hopes up but so high.

Thank You!

I have to say we have neglected in sending "Thank You" cards out.  I would cast a long list of excuses...but they would still just be excuses.  haha....so I am glad to announce that the first batch when out yesterday...and more to come.  I am having to hunt down some address...but please, if you know you should be getting one, or just want a pleasant note from us, please email me your address...at cwbarr01@gmail.com

3/8/2013

I am posting a tad early today.  Tried to send little man to school today.  He was up a few times with a tummy issue last night.  It was still bothering him this morning, but with the evil principle and truancy rules (pushed to the limit by him missing a few days during the surgery), I felt like I had to send him.  If I did not take him, only a doctors note would excuse him.  I am sure he will be fine after some sofa time.  Poor thing barf'ed in the lunch room this morning.  I felt so bad for sending him.  Wish that principle had to clean it up herself.

So, looks like I will be caring for a couple sick jokers this weekend.  I know what I can do to fix midget...new video game.  He has earned it too....been good all week!   Melissa...well, she is a more complicated "sick"....she just needs some sleep.  I will do my best to be jolly and fun this weekend, damn it to hell.

I always giggled when my great aunt Nanny would say that..."Damn it to hell"....she wouldn't say it all the time...she would say it real quick...you could almost not catch it all....she was so sweet and kind, to hear her say something like that was just kind of funny.  It has always stuck.  I am sure my cousin Mike remembers that too.  I have thought about her a little lately....lost her in 1996 (I think) to cancer.  It was tragic and quick....happened while I was away at college, though I was lucky enough to get to come home and see her. Threw me off for a while...that and the stress of college...before I knew it, I was out of school, on probation from school (though, I never failed a class)...nor was I even interested in going back.  I did take some classes at Bland, but after some adult bills and crazy work schedules, I never finished a degree.

I will leave you with a quest....go out and seek the sacred Krispy Kreme Banana Cream Pie....they are usually sold on the same kiosk the donuts are....with the cherry pies and such.  OMG....they are special. 

3/7/2013

"It is almost Friday"....that is the thought I have every Thursday when I wake up.  haha....almost there.

Melissa had another poor night of rest...suppose that will just be the norm for the next couple weeks.

Trying to shake this "funk" I have been in the past week.  It is just, the bills are here....treatment is here....and life has to still go one around all of that.  One day at a time...

Lance Armstrong may have been a doping cheater in cycling, but there are no rules when fighting cancer...

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell." - Lance Armstrong

3/6/2013

Melissa is doing pretty well so far, besides not sleeping well.  Regardless of what the prescribe her, she does not seem to be able to sleep through the night.  We even did the bed up with some new sheets...no dice.

Please keep sharing the fundraiser.  It is almost half way through and only about 10% of the goal has been raised.  Turns out, medical bills will exceed the goal on our fundraiser, so ever cent will go to medical bills.  Any size donation is welcome.

http://www.giveforward.com/barrsbattlebraincancer

3/5/2013

I have not been in the best of moods the last couple days.  I am weighed down with things and problems no one can help me with....so, in an effort to not post something that later I would later regret, I plan on keeping things simple until I can figure out how to straighten out my bad mood.

Melissa is fairing fine.  Having sleeping issues yet again...motivation and organization problems I suppose will always be part of her life now....but for the most part, she is doing great.

Expecting some "Central Virginia Snow" tomorrow (aka, a touch of snow and a ton of cold rain).

My Journey as a Cancer Caregiver - by Cameron Von St. James

Introduction - by Charles Barr

Being a Cancer Caregiver for a loved one or a spouse, for most, will be the hardest thing you will ever face in life.  Drastic swings in emotional and financial stability tear at every inch of your soul.  You tether yourself to loved ones and friends to keep from falling.  You desperately fight for the time to just accomplish what you absolutely have to accomplish....and your wants and desires are pushed to the side.  Whether you sport a healthy poker face or not, you are always scared that the worst could happen.  You have no choice but to hold on to any bit of hope you can find.  Among the hoards of horror stories about Cancer also comes stories of true inspiration that reinforce hope and help cast out the fear that can eat you alive.  

This is one of those stories.  

My Journey as a Caregiver

by Cameron Von St. James

Words can’t describe the feelings that came over both my wife, and me when we got the news. November 21, 2005 was the date when Heather’s doctor diagnosed her with cancer. Malignant pleural mesothelioma was the phrase he used, and our lives were changed forever. The diagnosis thrust me into the role of caregiver, a place I never thought I would be—certainly not at my age, with a 3-month old daughter at home. It was just a month before Christmas and we had been excitedly looking forward to spending it with Lily for the first time. However, this news threatened everything we had been looking forward to, and sent us down a long and difficult path to beating cancer.

Upon diagnosis, Heather’s doctor gave us three options for treatment: the university hospital, a regional hospital with all the credentials but no specific mesothelioma program, or a mesothelioma specialist in Boston. I looked over at my wife and realized I would be taking the role of caregiver even sooner than I has expected. She was shocked from her diagnosis, scared of what was to come, and in no condition to make a decision about her care.  She looked to me and her eyes pleaded for help. I fell into a role I was in no way prepared to take. “Get us to Boston,” I said immediately.

If you have ever been close to someone diagnosed with cancer, you know that there is a stark line dividing your pre-diagnosis period and everything that comes after. A period of chaos descended on our lives, destroying our daily routines. Heather left her job and I reduced my own workload to part-time, in order to be there to care for her and Lily. My life became a wheel with three spokes: working, traveling to doctor’s appointments in Boston, and caring for Lily and Heather. Friends and family supported us in every way they could, both financially and emotionally. My gratitude is a debt I can never repay.

Even with help, however, taking the role of caregiver is far from easy. There were days when I felt I could not go on. I pushed through, but sometimes I wonder how. I tried to keep the worst emotions—anger and fear—from overwhelming me. I hid my weakness from Heather and our daughter, knowing my role was to stay strong. Most of all, I never gave up hope. In the end, it was this fervent, determined hope that kept us afloat during the dark times.

At long last, it paid off. Successfully completing mesothelioma surgery, radiation, and chemotherapy, Heather conquered the disease. Today, seven years after her diagnosis, she is completely cancer free.

It’s hard to look at an ordeal like that and find any silver linings, but I can’t deny that it changed my life. Your time here can be finished in the blink of an eye. If there are any unforgivable sins, surely wasting that precious time is among the worst. I went back to school for Information Technology, using my newfound stress and time management abilities to succeed. I graduated with honors and was chosen to be the speaker for my graduating class. I told them the truth — that I never would have expected to be standing on that stage after my wife’s cancer diagnosis just a few years before. I told them that they must never lose hope and I tried to make them realize that our only limits are the ones we place on ourselves. Inside of each one of us is the strength to accomplish incredible things, if we only just believe in ourselves and never stop fighting for what, or who we love. 

Brain Cancer Facts!

3/4/2013

Melissa is doing good...focusing on getting some chores done today around her treatment.

I have a guest author I will post today...great story worth sharing.

For now...

Let's have some fun today!







You know what, Brain Cancer....

                            Aint nobody got time for dat!

3/3/2013

Another solid day for Melissa....soldiering through.  No news is good news.

Finished dishes today.  It may not sound like a great accomplishment, but I washed every dish, plate, spoon, fork....every thing we own, practically.  We have been doing a lot of cooking to save money...and I seem to be the only one who washes dishes...haha....

We had to go to Richmond to pick up little man.  Me and Melissa came to the same decision....we were going to each at Cheeburger Cheeburger again.  I know.... gluttony, right?  It was that good.  I could eat a good burger every day.  I almost ordered one to go....haha.

Melissa has a mask (or so it is called) she wears during radiation treatments, that is molded to fit her face very tightly....so tight, in fact, that she looks like this for the next 20 minutes or so after treatments.

3/2/2013

Melissa is still soldiering through....nothing new to report there.  I did see signs of the "hunger" that comes with her return to steroids...but not near as bad as before....kind of balances out the queezie.

I managed to get the living room cleaned...and I mean, organized (kinda), cleaned, vacuumed...the works, before 10am.  Few loads of dishes too.  It feels good to catch up a little on things.

Took little man to stay with other, other grandma and papa, in Richmond.  Afterwards, me and Melissa made quite a discover....Cheeburger Cheeburger...
http://cheeburger.com/home2/index.asp
Incredible burger...sometimes, simplicity is bliss...and with burgers, it is all about quality beef, toasted bun and whatever ya desire on fixings.  With a name like that, of course you have a good burger....but the onion rings...omg.

Played Madden until the wee hours.  Success.

3/1/2013

A new month...let's hope it's a good one.

Melissa now has her new battery of drugs, including the once hated steroid but also a strong sleep aide that should hopefully allow her to rest and keep some kind of normal schedule.

I have to say, my post yesterday showed quite some frustration....comes with the territory, I suppose, but today I feel a little better.  Same problems, different attitude slightly...though I have to say, I have had many strange, yet, spiritual thoughts....moments of crazy-man clarity...hard to explain without an example...

So, example...I used to think that dying suddenly, without warning, was as tragic as it gets...now, I think much the contrary...dying abruptly even has a air of morbid celestial mercy...trust me, from what I have witnessed, there are far, far worse ways to part this earth.  From the first moment your loved one gets sick or that "diagnosis" comes in, things are different.  Granted, having time with that loved one and a fighting chance to cheat death is better, getting through all of that is hell.

2/28/2013

Melissa is still struggling with an upset belly...but so far so good.  They put her back on steroids today...along with another sleeping aid and belly meds.  She has had some pressure behind her right eye the past couple days....headaches a bit too, though they may be from her hell-ish/torture sleep schedule.

I am a bit livid about Social Security.  We filed online months back.  Now, of course, they have no application on file.  Oh joy.  Of course, I should have been there myself today because they treated Melissa like no one special even when her condition is CLEARLY a "FastTrack" condition, and by FEDERAL LAW should be expedited along with additional compensation called a "compassion allowance", and retro-back to her diagnosis date....none of which they bothered to mention to Melissa...they just set her a date 3 weeks from now.  Delay, delay delay....that is what keeps America's Social Security from going belly up.  Every day people are rejected and put off for benefits they have earned, paid into, and have a legal right too...which, of course, leads to hoards of attorneys who specialize in getting those benefits you are owed....for a nice cut, of course.  If we have to go that route, so be it.  My flipping Congressman will know my name, if so.

As you can tell, what used to be, what I thought, was an "endless well of patience" is now running quite dry.  My daily schedule is over-run with tasks (both at work and home), worry, bills, house-cleaning, and responsibilities, that frankly, I get little or no help with...I never have enough time....I can never work hard enough....I can never accomplish it all...and despite how hard I try, I find myself constantly upset with Melissa, Co-Workers, and life.  Melissa can not help that the tumor effects the part of her brain that controls motivation, organization, and task-tackling...but I still need her help sometimes.  Sometimes, I feel like I can count on no one, including myself.  I understand...everyone else works...everyone else has their own family and responsibilities.  Many have said, "all you have to do is ask." but, that takes some level of organization...some level of planning for people to be able to adjust their schedules...and things are just too damn mixed up and disorganized for much of that.  This weekend, I need to find some flipping way to recharge the batteries.  Little man goes to his grandparents....I plan on cranking up the tunes and cleaning house...but at some point, I need a break from all this bullshit (sorry for the language, but it is what it is).