Melissa Update!

So, still no resolution to the stomach bug.  Working on getting her to produce a "sample" for testing.  Not an easy subject with the ladies.  Until more testing is done, nothing else can be done to get her feeling better.  There has been no change or improvements to report.  I would say I am frustrated, but that would be a gross understatement...it is more like uber-quasi-frustrated, with maybe a few curse words sprinkled in and around that.

I did have a fun dinner with just me and midget at Golden Corral last night...not my favorite place, but for him, heaven.  I am not much on the food, or gorging beyond belief at a buffet (for that matter), but he claims the spaghetti is the best in the world.  The same spaghetti he barely eats any of before moving swiftly to what he really came here for...the chocolate fountain, ice-cream bar, and cotton candy.  I did manage to get a few pieces of steak in him before the sugar.

For your viewing pleasure...here is midget devouring his treats...

I Love Comments!

Though I can not reply to them like I used to, I love comments on the blog.  They help remind me that besides the good the blog does for me or it's value in keeping family/friends in touch with our situation, it also helps people relate.  The saying, "Misery loves company" is not just about the miserable wanting the share their misery...for some reason, just knowing that people "been there and done that" or experienced the same issues somehow, morbidly even, seems to help.  I would wish the past 14 months of my life on my worst enemy...but, somehow, hearing that other can relate helps.

So please, comment when I "hit close to home" or "strike a nerve"...I love to hear from my readers!

Snow Day!

I am not fond of cold, arctic air but I do love a decent snow storm.  Tuesday night, we got about 4 inches of fine snow...perfect for sledding!  I took little man to my neighbor sledding spot...the Water Tower.  We bundled up thoroughly and headed out early before the hill was tore up.  Little man was a soldier.  We had a blast sledding for almost two hours in sub-freezing temperatures.

Prior to our first slide down hill, I was wondering if I was maybe too old to be sledding down a snow hill...well, I have you know, I am not "too old" but my bumps and bruises say I am pretty dang close to "too old".  Sadly, no pictures were taken.

Just Not Beating This Belly Bug!

Melissa is still miserable...nausea etc.  Hell of a way for her to have to celebrate her Birthday.  Like almost everything else in modern medicine, why treat an issue with one appointment when you can get 3 appointments and batteries of tests to rack up profits on?

Being her Birthday, I did drag her out for dinner at my parents.  She got a new pillow and bed stuff...put promptly to use.

Summer Plans

After our glorious trip to sunny San Diego last summer (compliments of the most awesome non-profit 3 Little Birds 4 Life and many contributions from friends and family), I find myself craving another family adventure.  So, I am planing a trip...one that will likely take some masterful Google'ing, an amazing tight budget, and help from friends and family...

We are going to Disney World.  Well, I am sure midget will like Universal Studios more...but Orlando is on my radar.  Any advice, connections, hook-ups are welcome!

Daddy Is Home!

I know everyone at my house is excited when I get home from work for the day, but no one celebrates me getting home from work quite like my dog April.  Sure, the kid runs around the house sometimes too, but my dog is literally beside herself in shear joy at my arrival.  Honestly, it is one of the best parts of my day.

When I do manage to get in and sit down, this happens...

This means it is time for me to do "stupid human tricks"...aka, water, food or a trip outside.  I am the only one she does this to.  I am usually more than happy to help....after all, she just about had a heart attack when I got home because she was so happy to see me...how could I say "no"?

Rare Central Virginia Snow Storm.

Yesterday Central Virginia had a rare snowfall.  Little man had every curtain in the house open, as to not miss the very first flake as it fell.  We ended up with about 3 inches of snow, or so...plenty to mess up the roads, close schools, and maybe even have some fun in.  I, on the other hand, headed off to work, despite desperately wanting to play with my son in the snow.

Oh, the sacrifice to be a slave to the system.

Thus...here is my picture of the snow....of my car....from the window at work.

 

Another Clean MRI!

Felt good to hear that Melissa's latest illness is not related to brain cancer.  Got good MRI results yesterday.  The nausea and stuff is still an issue.  They tried some IV fluids and anti-nausea meds yesterday, to no avail.  They still have some testing and diagnosing to do to get to the bottom of the nausea and stuff.

I just want my darlin' feeling better.

At 6yo, How Would You Behave If Mommy Was Sick?

Ask yourself, if you were 6 years old, how would you behave if your Mommy was sick?  I do...all the time.  Our son has really been acting out at school and I have to think, again, Cancer is going to catch some of the blame.  Granted, he is 6 and, well...enough said (especially for those who have raised a child, you know what I mean)...but, still, it has gotten a bit beyond the normal misbehaving.  The school he attends seems more worried about tests then anything...I am sure that does not help, either.  After all, I am not at the school to guide his decisions...though, I am not far from just that.

Today, while in my constant daze of worry, I did seem to connect a few dots.  Though he has not been great all year, the last month has been rough and that seems to directly line up with when my wife began not being able to eat or get out of bed much....so I went to "Google'ing".

This one really seem to help me understand a few things...

Shadow Children
http://cms.carepages.com/CarePages/en/ArticlesTips/FeatureArticles/MargaretJaworski/shadow_children.html

A kid his age worries about things like, "What's for dinner?"  "Who will tuck me in?"  "Who will take me to school"  "Who will make me breakfast?"  but also, "Will Mommy die?"  "Could I die, too?"

As I read about this, it all seemed to make sense.

• Acting out in school.
• Being disruptive and/or disrespectful. 
• Changes in eating and sleeping habits.

What we seemed to have done wrong:

• Keeping a regular schedule.  Who can do this with Cancer "wrecking shop" in your life?  We certainly have room to improve this.
• Staying honest about the situation.  Relate to them on their level, but do not hide or "candy court" the illness you are dealing with.  Well...we have been open and honest the whole time...but never really explained things and God knows what he could have overheard....surely room for us to improve here too.
• Play with your child and give them more attention.  I have to admit, we do not do this enough.  I try to...but his mom does not, really.  We both need to improve here.
• Keep your child socially active.  I need to make some contacts to set up some "play dates" for him.

Then, of course, are the ways to potentially deal with the situation:

• Do NOT punish them.  Ok...ok...really?  I use positive reinforcement for the most part, but have to admit, not lately...so I can try this...somehow.  Need creativity to pull this off without looking like a full on retreat, though.
• Explain "you will ALWAYS be taken care of".  This is something most parents would never need to say out loud, but a kid with Cancer attacking his mom and life, he needs to here it.  I can do this.
• Discuss the situation with the school.  Though communicating and explaining any unique situation to this school is hard, I am making this call today (and emails).  They are some-what aware of our ordeal, but not the recent events that seem to be part of this.

For any child, there are many other factors.  For our son, the pressure to learn to read has been really thick the past month too...and I have to say, that is part of the cause too.  I expect to mention this when I call his school, as well.

One thing is for certain...I am so tired of feeling like I am responsible for everything.  The house, our son, the dog, our laundry, my job, our bills...oh, the woes of a Cancer spouse.  I am a man, I will just suck it up and do what I need to.  I just need to do better.  One day, I hope to share this blog with my adult son so he know just how hard it is to be a parent and husband.

I heard someone, somewhere, say, "When you stop having things to worry about, you die.  Stay worried."  

I Won $250 Towards New Tires!

You know how you enter those contests, forget about it, and then win them?  Well, it seems I do about once a year, or so.

Thanks to the Titan Auto and the Progress Index "Outdoor Traditions" insert/webpage, I won $250 towards a set of new tires!

Here's the picture!

Here is a link to Titan Auto, in Colonial Heights, VA!
http://www.titanautotire.com/

Laying Down The Law.

My son has been struggling with his behavior at school.  Some of that is understandable, with everything that is going on in our lives...those emotions are bound come out somewhere.  You would think the school counselor might talk to him or at least be involved...nope.  Seem in glorious Petersburg, the guidance counselor is only there because schools are required to keep one on staff, but not required to actually utilize them.  I think his behavior is coming around, but it got to the point that they talked suspension...not for any one act beyond reason, but just for general talking, getting out of his seat and other kids stuff.  They offer NO OTHER forms of punishment or reprimanding at our Elementary schools.  When I asked why I was told there was no budget for that.  I am SO glad we are moving after this school year.  No budget for the ONE of the most important things a young school age child needs, training on behavior and discipline.  I suppose SOL's are taking priority again.

No doubt, though, he has been misbehaving.  Yesterday, he got to meet "mad Daddy" for the first time over his school behavior.  Sure, he is used to discipline from me but I have been taking it easy on him, working with more positive reinforcement techniques...but yesterday I had to make a point...hopefully, he got the message...if not, that new TV Santa brought him will look really nice in my bedroom.  

While you are praying for Melissa, send a note upstairs for midget too...he could use some divine inspiration.

On a brighter note, here's what happens when you put a Five Guys burger in front of midget.

MRI Done...Now, The Waiting...

So Melissa had another MRI last night in response to some symptoms.  Today, she is still feeling rough and has a head ache.  Normally, we try to get her Dr. appointment just after, but because of the "urgency" move up of the scan, we will not get the results until Monday.

So now, we wait.

It is one of those situations, though...

Sure, we all hope and pray the cancer doesn't come back.

Even if the scan is clean, what IS causing her symptoms?


Our son kind of knows something is up.  Yesterday, in an attempt to rush us out of the house likely to obtain access to the living room TV, he said (most sincerely), "Daddy, I want you to go ahead and take Mama to the doctors.  I just want her to feel better."  That kid, I tell you...he may not be the best behaved out there, keep a clean room, or even listen to 10% of what his parents say, but he has a heart of pure gold.

"This is NOT a death sentence!" - The Liz Army Blog

Love this blog.  Liz is perhaps one of the most motivated brain tumor survivors I have seen.

This blog post is spot on...

http://thelizarmy.com/2014/01/brain-cancer-is-not-a-death-sentence/

Moving Up The MRI

After calling about symptoms she has been complaining about for weeks (nausea and lack of energy), Melissa's oncologist has moved up her February MRI to tomorrow.  Seems like she just had one.  Need some positive energy flowing our way...every one of these things are scary.

Then again...maybe it is more like...

"I just don't feel right."

Have I mentioned that Cancer is a SOB?  Well, it is...and then some.

One thing that you will often find survivors saying, especially brain tumor survivors, is "I just don't feel right"...even on a good day.  Of course, that feeds the feelings and thoughts about it coming back.   I mention this only because I know how much a reading survivor can relate.

Romanticizing Cancer

I saw this today...had to post.  I can slightly relate to this.

This is more about GBM (or Glioblastom Multiforme) which is the grade just beyond what Melissa has dealt with.  Moral is, sometimes the little positive phrases are like a slap in the face.  Reality is, brain cancer flipping sucks on so many levels and there is rarely any "bright side".  Most people would never understand (if they are lucky).

Palliative Care is New?

Palliative care, by definition, is health care for seriously ill patients that treats the entire patient, both the major illness troubling them, but also side effects, other ailments, overall health, lifestyle, diet...in short, it is FULL healthcare instead of partial.  I was shocked that this was not the approach of every doctor in every facet of healthcare.  Complete care should be part of dealing with ANY major illness, and surely Cancer.  Cancer treatments are mixtures of radiation, chemotherapy and other medications that doctors really know less about then they will ever admit.  Some treatments they will actually tell you, "We are not sure, but it works".  Well, that certainly explains all of the unique personal side effects...most of which, are the cause to discomfort with Cancer...shockingly, most of these go untreated.  Further more, doctors seem almost resistant to asking about those kind of things...like a person who doesn't look at the scary parts of a movie.

Recently, I contacted some organizations about Palliative Care and how different it was to the care my wife did and still receives.  I hope they reply.  It is interesting that I find her hospital and doctors on the list of "Palliative Care" facilities in Virginia...it would be nice to hear someone explain.

Working on Reading

Working with little man has been quite challenging.  I suppose, in an effort to push little kids (and caring parents) to the breaking point, Petersburg City Public Schools expect 1st graders to be able to read on their own after Christmas break, despite most of them not being able to read well going into the break.  For me, this meant a challenge to prepare my son...to, basically, teach him to read on our own.  I have to admit, his teacher this year has done ok with him, but he still has a long way to go.  This weekend will be a reading extravaganza.  This is something else I do pretty much on my own.  I wish Melissa would help more, but she has no patience for him...and vice versa, for that matter.  Perhaps a tutor is in order.  Hmm....one that washes dishes as well would certainly seal that deal.

Trying To Remember How To Have Fun (Cont...)

So, our attempt of New Years fun ended at 9pm.  Melissa's stomach has been a very long, on-going issue that the doctors seem fine with just allowing to continue.  It only takes a short time dealing with doctors to realize how corrupt and inept our medical system is in America, not to say that it is still not one of the best in the world.  Where most doctors fail is not treating the entire patient or not giving "palliative care".

What is Palliative Care?

Here you go:   http://www.getpalliativecare.org/whatis/

Then, on the list of centers offering "Palliative Care" I find Melissa's hospital.  What?  Yep...they claim to offer "Palliative Care" when, in fact, they only treat cancer and nothing else.  They could care less of your quality of life...they just treat cancer and leave the rest for you to deal with.  Maybe toss a couple pills at your issues, maybe give you a pat on the back or tell you, "This is normal for her condition"...well I no longer care what is "normal for her condition"...most doctors try to find solutions...and hers could care less, it seems.  Sure, they make suggestions, but it is their job to provide this care.  When you go to a restaurant and order a meal, they don't just bring you the recipe, they serve you the meal.