A Little Help For The Holidays

As many of my blog readers know, about this time two years ago and C-Day.  Melissa's cancer diagnosis and what followed was enough to financially ruin an independently wealthy family...which we were not.  During the "thick of things", I had serious doubts we would survive...expecting at some point to be living in some family members basement or spare room...but that never happened.  We got by.  I am still not quite sure how...but we made it through much better then I ever expected, not to discount the challenges we faced and still face today.  We live paycheck to paycheck, like most.  We have a lot of medical debt.  We barely make enough to cover our bills....but, we get by.  We received help from so many that I couldn't even begin to tell you who helped us get through precisely...God, I suppose, would get the credit.

We had to downsize, for many reasons, into an apartment and have tried to live within our means, but to this day, we still suffer from the financial woes of cancer.  Like most parents, we focus our Christmas finances towards our son, who honestly is such a modest, laid back child.  He is pretty easy to please.  Of course, something unexpected always happens when things are tight.

About 2 weeks ago I noticed this on my TV...

...a black spot on my TV...and then I am told that it will likely grow...soon, our TV would be no good.

I attempted to save enough in the budget to tap into a good Black Friday deal, but that just didn't work out, even though all we really had room for a 32" or 40" TV.  Instead of finding savings, I found bills I needed to pay and not quite enough money to even do that.

I know it seems trivial to be worried about a TV...but let's face it, the only TV in the house going bad and no replacement in site, well, that is a modern day nightmare.

About the time I noticed the spot start to grow, I saw a post on Facebook from the non-profit Brain Tumor Alliance.  (Click HERE from their Website).  They posted about a tradition of helping families with small things around the Christmas and that they were looking for people to help.  I hesitated for a moment, but then decided to contact them.  I told them our story, shared my blog, and mentioned the one thing I was really worried about this year...our TV.  Even though I all but talked my way out of needing help I really needed...they came through and decided to help me surprise my wife and family with a new TV.

In the past, other non-profits had helped us...The Matthew Renk Foundation, 3 Little Birds 4 Life, and now, the Brain Tumor Alliance.  I would love for those out there who have a loved one in need...share this post with them and get them help....those who are lucky enough to not know someone in need, donate to these great organizations...they do amazing work.

One message I want to send to cancer patients, care givers, or families touched by cancer...there is help out there.  You and your family do not have to battle this alone.  There are amazing organization who raise money every day to help you because of the cancer that is attacking you...people who want to help.  Sometimes, all you have to do is be brave enough to ask for help.

The Black Keys Inspire

Thanks to a call-in contest on 102.1 XL102 in Richmond, I won two tickets to see The Black Keys in concert, which came with a special pre-show meet-and-greet.  At first, I was going to take my best friend, but he really had some important stuff going on in his life right now that needed his full attention.  Melissa was not feeling up to it, so I decided to take my son to his first big concert.

I was worried about how he would behave at the pre-show event and was just sure he would lose his patients during the show.  In fact, little man was very excited to go.  Though his behavior wavered during the long wait for the meet-and-greet to start, he quickly realized that he was getting a nice sneak peak into a real rock concert, that he would later attend.  The Black Keys played a couple of warm up tunes for us during the sound check, during which the Lead Percussion Manager hooked him up with some Black Keys guitar picks (awesome).  When we met the band, they game Micheal signed drum sticks (super awesome) and went on to sign just about everything Michael handed them (which, rules prohibited getting more then one item signed, but must have only applied to adults - mega/ultra awesome).  Thanks to Black Keys drummer Patrick Carney, my son now wants to learn how to play drums.  The guitarist and artist in me is proud and excited with Michael's decision, and inspiration for that matter (the Black Keys rock)...my current/future neighbors and his mother, not so much.  We will just have to work that out.

The show was amazing.  Both bands we got to see are nominated for Grammys (1 nomination for St Vincent, 3 for the Black Keys).  For all those fellow parents or relatives of Michael, yes, he did wear ear plugs during the show.  I do think, after seeing him dance, that he may need some pointers or dance classes....looked a lot like me trying to dance.

Just a great time!

My kid is so much cooler then I was at his age.

Here are some pictures from our day...pretty amazing.

The Dark Side of the Holidays

Somehow, as much as I have always adored the holiday season, in particular Thanksgiving, Christmas, and New Years, it has also been the time of year I seem to deal with the most sickness and loss of family and loved ones.  Most notable, my grandmother died just before Christmas when I was younger and Melissa's brain cancer diagnosis, which happened just after Thanksgiving followed by surgery and the post-op infection hospital stays (which lead me to almost naming this blog Cancer for Christmas).  

This holiday season, I have already lost three...my uncle, a close family friend and my father-in-law.  All were ill a long time before passing and are all in a better place now.  Still, more allure is added to the "dark side" of the holiday season.  Still, I love the holidays.  If anything, the many other not-so cherished moments make every other good moment that much better...at least, that's the positive note I will end this post on.

Thanksgiving!

Thankful (thank-ful)

• Pleased and relieved.
• Expressing gratitude and relief.

I like the second definition.  

Both definitions make me think...most of us are "pleased" or "gracious"...

...but are we "relieved"?  

Here is what I think on Thanksgiving...

Stop for a moment...

...stop your worrying and appreciate those things in life you work so hard for all year.

 

Is It Almost Thanksgiving Already?

Update w/Halloween Pics!

All is well in our world...still adjusting to the new place and apartment life, but all in all, we are doing better.

Here are some recent pictures!

Halloween!

...and well, I just had to share some of Romo on the ground, too (Hail to the Redskins).

Midget driving a Fire Truck.

...and at the park!

One of my favorite shows (AMC's Turn) is partially filmed in Petersburg, VA...so here are some shots from the set!

Farewell Super Josh!

Anybody you has been involved in Brain Cancer social media likely knows who Super Josh is and for good reason, as he has positively affected the lives of millions of people.  Like many, I was captivated by his story, his smile, and all the good he was doing with it.

Josh lost his battle with Brain Cancer.  Please, take some time and read about him, his foundation, and all the good they do in the UK and across the world!

http://www.joshwilson.org.uk/

Farewell Josh.  I think I can safely say, the world loves you and will miss you.

Never Fart in an MRI!

Never fart during an MRI...

http://www.huffingtonpost.com/elaine-ambrose/dont-fart-during-an-mri_b_6044578.html?ncid=fcbklnkushpmg00000063

Great read!

Making the Wrong Decision for the Right Reasons.

Is it even possible to make the wrong decision for the right reasons?  And, if you do, does the reasoning make that decision ok?

I was torn when I first heard of Brittany Maynard's brain cancer diagnosis and decision to take her own life as opposed to letting brain cancer do the work for her.  On one hand, I totally understand...brain cancer, treatments, medicines, the side effects...hell, the extreme costs alone...they all suck, for you and your loved ones.  On the other hand, even though you may be surrounded by a lot of terrible things, those special moments that happen after a bad diagnosis are priceless.

It is certainly a personal decision...one I will not criticize.

Brittany followed through with her plan.

Read more...

http://www.cnn.com/2014/11/02/health/oregon-brittany-maynard/index.html?hpt=hp_t1

Boobs vs Brains

The saying "it's a man's world" comes to mind when Breast Cancer Awareness month comes around.  Being a huge NFL fan, pink invades stadiums and uniforms for the entire month.  Breast Cancer seems to be the most popular, or should I say, the easiest to rally support and funds towards curing.  Everyone seems ready to help save boobs.  I can not blame them...boobs are great...but aren't brains more important?  Sure, more people are affected by breast cancer, but brain cancer has fewer consistent treatments and a much higher mortality rate, not to mention the countless and unique side effects to treatment or the cancer itself.  

So, call me biased, but I say...

Two Great Stories on BC

Here are two great reads.

They are two different views on the end...both of which I understand all to well...

Meet Brittany Maynard:
http://www.washingtonpost.com/news/morning-mix/wp/2014/10/08/terminally-ill-brittany-maynard-29-has-scheduled-her-death-for-nov-1/

Now...

Meet Maggie Karner:
http://thefederalist.com/2014/10/10/brain-cancer-will-likely-kill-me-but-theres-no-way-ill-kill-myself/

October Update!

All is quiet in the battle with BC.  Melissa had a nice, clean MRI last month.

BC (Brain Cancer) has been in the news a lot, lately.  Great exposure for this forgotten, understudied, and lethal cancer.
Our recent move (into an apartment) has really helped us.  I am finding it much easier for us to manage, establish routine, and enjoy our living space.  Little man is has really liked meeting kids in the area he can play with and that he goes to school with.  It is also seeming more affordable then our last place, which is another great thing for us.

Family is important, especially during hard times and holidays...I respect that more every day....after all, without them, you might end up this guy...

Yep...

I am a passionate Redskins fan...

I am just going to leave these here...maybe I will say more one day.

http://www.washingtonpost.com/local/the-daily-show-springs-showdown-with-native-americans-on-redskins-fans/2014/09/19/c6c5f936-3f73-11e4-b03f-de718edeb92f_story.html

http://www.washingtonpost.com/local/daily-show-airs-segment-pitting-redskins-fans-against-native-americans/2014/09/25/f5d082da-44e3-11e4-b437-1a7368204804_story.html

New School Bliss

I feel it necessary to brag...Prince George, VA schools rock.  Little man has flourished under their guidance, so far.  He has a ways to go, but is definitively benefiting from the move.

Moved, Not Settled...

The majority of our things are not in another place...so technically, I would say we are moved.  We are certainly sleeping in the new place.  We are far, far from settled, though.  Every day, it gets closer...and the more I see how well it should all work out, the more I want that process to be complete.  We'll get there...I just need to find some patience...it must be in one of these boxes.

Melissa has an MRI appointment tomorrow.  Two fairly important milestones together...the move and the MRI that could lead to far less MRI's....it would mark almost 2 years of clean MRI's.  That is pretty important stuff, with the odds stacked up against you.

Still Moving!

Wow, I am sore.  Most the heavy stuff is moved...now unpacking!

Posts should return to normal next week.

Moving Day is HERE!

We are moving...and it starts today!  We got our keys to the new apartment this morning.  I am excited.  I have spent the better part of the last week getting ready.  Melissa is not much help, these days...so it has been pretty much on me to get us packed up...and today I start loading the moving truck.  I hope to have us sleeping there tonight...tomorrow at the latest.

Wish me luck.  I hope my back holds up.

 

Another "1st Day of School"

Today, midget starts the 2nd grade in a new school.  We are very excited!  A new school...a new place...getting back in to the swing of things.

It was a long Summer.

We will face some challenges with adjusting from a horrible school to one of the best schools in the country.  We are willing to put in the work, though...and even midget seems ready to learn.  I think this is the start of a great year.

Well, We're Moving On Up...

...to the East Side...in a deluxe apartment in...

Prince George, VA.

It was tough to find a place we could afford, given the past year and a half, but we did, with a little help, and will be moving midget to better schools.  The place should be nice and a little larger.  I am looking forward to it being just my family again...and the dishwasher, never had one of those.

We are moving mid-September!  I will keep ya posted!

Ch Ch Ch Changes...

No one is the same after a cancer diagnosis.  In brain cancer patients, there are limitless side effects.  Doctors have no clue how you will personally be effected by the treatment and cancer, they simply are treating you to keep you alive.  You do not have to be a "brain surgeon" to know that doing brain surgery, having tumors, having your head blasted with radiation, and exposure to the poison in chemotherapy is going to mess with your head.  The treatment for a thought-to-be-terminal brain tumor is BOUND to change you.  Brain cancer patients, often, are the least aware of those changes.  I know, that is certainly the case with my wife (and here is where I choose not to push into intimate details).  I do wish that doctors, especially psychologists, were involved with recovery.  What good is surviving cancer if you can't manage your life afterwards?  So, my suggestion, make sure long-term recovery goals and help from psychologist are a part of your brain cancer treatment plan from day one....if not, you may want to find treatment elsewhere.  Don't let doctors treat just your tumor...make them treat the entire patient.

Sharing Without Embarrising

Blogging about something as personal as Cancer is, and not being the one who has cancer, while not exposing thing too embarrassing or personal has been difficult.  My wife is pretty good about letting me know if I cross the line, by her standards, but others (like family members, friends, or even other cancer readers) might thing I cross the line sometimes.  I am sure that is normal.  Sometimes, I find it necessary to get very "close to home" with stories and posts because that is the only way to really translate or express the feeling I am looking to get across.  This process is good for me...and hopefully, good for my readers.  Honestly, if my blog helps me, it is worth doing, but if it helps just one other person, well, then it becomes something even greater.

There have been a host of topics I have avoided.  At times, I wish I had made the blog anonymous just so I could share those intimate details without embarrassing anyone.  I have intentionally avoided digging deeply into topics like how cancer has effected my marriage, sex life, future, and my relationships with friends and family.  Trust me, cancer effects everything....down to the shirt you might put on, the soap you use, or even what you have for dinner.  It invades your wallet, your home, your family, and your relationships.

#Winning

Though I would not consider myself lucky all of the time, but sometimes I really strike gold.

Won this belt on Friday...

They are HOME!

Melissa and Michael are home from visiting family in Alabama!  I missed them both a ton!

Took midget to Training Camp Monday!

Where's OUR Jet Pack?

I read Liz's blog all the time.  She is so focused and self-aware....it is rare for a cancer survivor to be so driven.  She was diagnosed 6 years ago and is still brain cancer free, so, she provides some rare insight into what we may face in the future.

Here is her latest story:
http://thelizarmy.com/2014/07/seizure-drugs-where-is-our-jetpack/

Her blog is worth exploring...she covers so much and lays out the facts clean and simple...pulling no punches and with no candy-coating.

Angels

When I first saw this picture, I could feel a tremble inside.  Cancer is scary...a child with Cancer is the worst living nightmare a parent could face.

Angels...

Well...these Angels have some good news to report!

http://www.today.com/health/little-girls-battling-cancer-viral-photo-are-remission-1D79959176?cid=social_20140722_28266166

Eye/Brain Twister

I almost hate this things....

Idle Hands...

This weekend, Melissa and little man get back from a two-week trip to see family in Alabama.  I have made sure my "idle hands" were put to good use, cleaning, organizing and (probably, most importantly) relaxing.  It has been a nice break, but I have missed them more and more each day...so I am ready for them to be home.  I found myself quite lost in their absence.  Even the blog was quiet for a week or so...how rare, right?

What To Do?

Melissa and midget are visiting family abroad...so I have some free time and no idea where to start to apply it.  I came home sick from taking them, so these first couple days I have rested...but maybe tonight I start finding tasks to tackle.  Figures work is an absolute nightmare.

What If It Had Been Me?

Last night, I had a thought and the entire concept was fairly grim.  For someone married to a strong cancer survivor, I am sure this is a common thought, "What if it had been me?"  "What if I had cancer?"  First off, my wife has been a battle-ax against cancer.  Sure, there are people who have had cancer and somehow move on like nothing happened and I am sure there are many, many more who just shut down, give up on some level, or just "ride it out".  My wife has been a had her good days and bad days, but is a soldier through most of it.  Honestly, she made a lot of this as easy on me and her family as she could.  She took all that cancer could dish out and can still smile and laugh and I am not sure I could have done the same.  I would have been (and still am) a complete wimp when it comes to needles.  Just the thought of a sliver of metal being jabbed into me seems so archaic that it gives me shivers to even think about.  The idea of surgery is even more off-putting.  I would have been a scared baby going into the office to even talk about treatment...she just followed the doctors lead.  Going into surgery, she was calm and laughing...if not for that, I would have surely died of a heart attack that day...and if it were me heading into surgery, SHE surely would have been driven to cardiac arrest by my fear and cowardice.  After surgery, she didn't really complain and continued to make thing pretty easy on me.  I am sure she could tell I was rattled.  If it had been me in that bed after a brain surgery, I am not sure what she would have found...but it would not have put her at ease, for sure.  Even through radiation, chemo, and all the wonderful side effects that come with those treatments, she handled it pretty damn well.  Don't get me wrong, cancer, especially brain cancer, has not been easy on her or our family...the good days could be better, the bad days are pretty bad...but, we get by.  Sure, it would probably be cool to be married to one of those cancer survivors that moves on like nothing happened or uses it as some kind of super-motivator...I much prefer still being married to the woman I love.

Thinking of Starting a New Blog!

So, I have been considering starting a blog for me and my son and our adventures.

"Me & Michael" was what I was thinking of calling it...a place we can post crazy pictures and stories together...featuring points of view from the little man, himself.

Rough Night

Melissa has a rough night last night.  It has been a while since she had run out of the nausea medications that works, and honestly, I had no idea she was still needing them.  A few days ago, she ran out of a certain medication that comes in a tablet that dissolves, rather then a pill you have to swallow and digest.  When she called her doctor, the nurse said, "If you want a refill, you need an appointment."  She continued to belittle the patient but eventually offered to call the prescription in "this time."  Then, she calls in the wrong damn prescription...which my insurance fills only part of, and now, my insurance will likely not cover the correct medication and, of course, there is no returning medication.  After all, the doctor said "I will not need to see you for 6 months" just over 4 months ago.  Shouldn't her medications have enough refills to cover that time?  Frankly, because of some doctor's inability to properly keep up with medications he has prescribed and the obvious money-grubbing practices they depend on to get rich as quickly as possible, my wife, and many other patients, suffer.  You can tell, I am a little worked up...I do not like my woman felling any sicker then necessary.

Hopefully, we can get this straight today before her 2 week trip to see family.  If not, it could be a rough trip for her.

The Storm Before The Storm

When dealing with any major illness, the fear of the worst never dulls in the minds of your closest loved ones.  I know with dealing with my wife's battle with Brain Cancer, I can not help but to worry.  Every ache, pain or bad day keeps me on the edge of my seat.  Frankly, what we have survived already is unbelievable.  If you knew all of the details, though, you would honestly have no idea how we managed, though...and neither do I.  As the "storm clouds" begin to clear from this ordeal, believe me the aftermath is one that we will deal with for as long as we both live.  Life after cancer is never, ever the same.  It is the only thing certain most find in fighting the illness.  Expectations and goals all must be redefined.  Hopes you had also must be redefined.  All of this takes time.  For me, every second of this needed time has been difficult.

My wife would tell you, I can be a bit of a "worry wort".  It was something playful and easy to pick at before cancer, after the diagnosis, though, it is something that tends to drive my wife bonkers.  No matter how softly I deliver my concerns, it rubs her the wrong way.  It has made trying to get our life back in order a nightmare.  I think for me, it was easier when things were moving so fast that I couldn't keep up.  At that time, people around me gave me break and I felt support from all around...but now, it is just us again and things are not what they should be.  I get little-to-no brakes anymore and since I am the only one who seems to worry in my house, I have to do so quietly while trying to also keep up with everything it takes for a household to survive.  It never stops.  It has not gotten any easier.  It has been the biggest challenge of my life.

I mention this on the blog for a few reasons.  For one, when I look back at all these posts, years from now, I want to remember and understand how we got where-ever it is we end up.  Another reason is because, when friends do not see me going out, playing music, or even returning a phone call, hopefully they will know that it is only because I am distracted by all my "must do's" and neglecting all of my "want-to-do's"...I am still quite overwhelmed, at times.  Last, but probably most important, when someone out there hits the internet to Google "Brain Cancer" for the first time, I want them to find my blog and know what we have gone through and that they are not alone.  Trust me, the blogs I found early on helped me more than any doctor ever did.

Update 6/18/2014

Sorry that it has been a while since my last update.  Work has been crazy.

Melissa has been about the same....still struggling with some issues, but cancer free and hanging in there.  Lots of headaches lately.

School is finally out for the Summer.  Most parents cringe at the thought of the kids home for 3 months...I'm just glad my son does not have to be exposed to Petersburg City Public Schools anymore.  The conditions at the school have prompted us to start planning to move...something we can not afford, but must do anyway.

I can not believe my father turns 60 tomorrow.  (Happy Birthday, pops)  60...60...
He is in good shape for his age, but just hearing the age 60 is scary.

#Truth About Brain Cancer

Fun With Family!

This past weekend, we were invited by my aunt to the beach.  It was really nice to see family.  My uncle has been battling cancer for a while...pick-lines and drain tubes and all, he soldiered his way to the beach to be with us.  He alerted me of all the anniversaries this year for our family...my dad's 60th birthday, my parents 40th wedding anniversary, 50 year anniversary of the passing of my father's mother, just to name a few...there was plenty of reasons to celebrate, including my uncle still being with us...and Melissa, too, for that matter.

...and everyone loves the beach.

The accommodation were fantastic!
 (https://www.facebook.com/notes/navy-ffr/discover-dam-necks-cottages-on-the-coast/162869289301)

We visited two of the best restaurants I have been to...

Blue Pete's (https://www.facebook.com/BluePetes)
In the heart of Pungo, VA...off the beaten path but not far from the waterfront, Blue Pete's has the look and feel of a "locals" spot with the food and service of a first class restaurant.  Whether you want a fine, quiet meal or a dozen beers with the boys, they have you covered.  The outdoor area has horseshoes, cornhole, tables, and lots of room to party.

Chick's (http://www.chicksoysterbar.com/)
If you have never been to the Chick's Beach area near Virginia Beach, you should be planning a drive right now.  It is so pretty...boating paradise.  Nestled in a marina, just off the main road, on the back-bay, is Chick's Oyster Bar!  You know a place is good when the parking lot is over-run with cars.  The views from the outdoor dining deck are fantabulous.  Lobster Mac...wicked good.

I was too busy to take many pictures...but to make up for it, here is a picture of what I look like driving the slowest go-cart of all time.

Story Of Depressed Goat, His Donkey Friend Goes Viral « CBS San Francisco

Story Of Depressed Goat, His Donkey Friend Goes Viral « CBS San Francisco



I love good news.

"The Never Normal"

I have not had a personal break since my wife was diagnosed.  When you are the one in the house responsible for everything (laundry, food, cleaning, child, etc) and you have little back-up, it is impossible to find a window to just get away...though, I have to admit, I am well passed in need of such a break.  Life is still surreal for me, even over a year after the surgeries and treatments...and I was not even the one who had the brain tumor.  You hear the term "the new normal" in reference to life after cancer...it should be more like "the never normal"...because a day can not go by without something reminding you of the damage done to your life by cancer.

Mini-Beach Trip!

Tomorrow, we leave for a two-day trip to Dam Neck with my aunt, uncle, cousins, parents and all.  I am really looking forward to some R&R, though, as most anyone knows, a beach trip with even just one child is seldom R&R really...I love and miss the beach...so even if it means staying up later then the kid, I will get some time to just sit and take in the breeze.

Expect some pictures from the beach trip!

Another Clean MRI!

Melissa's appointment went well yesterday...of course there was another bit of drama, but we will get back to that.  Melissa had another clean MRI.  There has been no re-occurrence since treatment ended.  A few more clean MRI's and who knows, might be less doctors for a while.  Looks like most the medicine is permanent.  I am sure she will battle head aches and the toll the treatments took on her body the rest of her life, but not worrying about cancer in the future would be pretty nice.

About that other drama...so on her way to Richmond, Melissa hit something in the road...with my new car.  When the valet returned with our car, after her appointment, the "Low Tire Pressure" light was on.  Long story short, though, I ended up getting a tire patched.  I have to admit, I was furious at the time...as I am really trying to keep this car in great shape.  All in all, though, very little damage was done and I am totally over it today.  Tensions were high for a few moments there...

Dr. Appointment Today!

Melissa had her MRI and gets the results today.  She is still battling nausea but seem to at least found a combination of medicines that can keep it somewhat under control.  It really makes life difficult for her...but what can you do?

MRI Today!

Today is yet another MRI for Melissa.  I will keep you all posted!

Holiday Lake State Park Excursion

I decided that this summer, me and the boy are not staying indoors on pretty days...so this past weekend, we explored Holiday Lake State Park, camping overnight Saturday.  We had a blast, mainly sight-seeing.  We stayed busy...Melissa sat this one out.