Patience, Patients.

Looking back, especially that past 4 months or so, I seem to have lost some of my "patience" with doctors and life, in general.  Sometimes, if is hard for me (the caregiver) to remember that most doctors have hundreds of "patients", all of which have different levels of "patience" and desire to get/feel better again.  A correct diagnosis takes often far more than one test result or doctor's appointment, granted, I have shown more patience then that.

One fellow blogger and brain cancer ultra-mega-warrior helped remind me that everyone has issues reaching doctors and getting calls back.  That trend is probably even more prevalent in great doctors.

I can tell you, though, I am such a different person now then before cancer invaded my family.  I definitely don't have anywhere near the level of patience I used to masterfully yield.  I think Melissa would agree.  I have been a little hard on her, of course, without actually saying much.  As a spouse and caregiver, I get the a double whammy...I have to keep my relationship healthy/happy and the patient healthy/happy.  Almost anyone who has been through this would understand how difficult that can be.

There is WAY more to cancer than the tumor...

Results Are In!

We received the results on some testing related to Melissa's nausea...and they were negative for the MS related/immune issue.  This is both good and bad news...because, of course, something neurological is causing the nausea...could be a re-occurrence of brain cancer, could be debris in the spinal fluid...so, still no real answers, but certainly, less possibilities.

An MRI is schedule in the next couple weeks...as usual, I will keep you posted (here on the blog!).

I Swear, I Am Not Ignoring You...

Nope...not ignoring the blog...just, we still have not heard back for Massey at VCU.  Shame...they really had us feeling great about our doctors, for a change, to then never call us back or return our phone calls.  I am beginning to think that all healthcare this bad.  In the mean time, Melissa is back to eating...a lot.  Granted, I can not blame her.  I am sure it feel amazing to hold down your every craving again.

The New Ride

It had been 8 years since we bought our last car...and the poor vehicle was beginning to fall apart, so, I went out vehicle shopping.

Here what I ended up buying...

...and, I LOVE it.  Way more affordable then it looks.  Pretty sure this means my "Mid-Life Crisis" is fully underway.  Holla!

Head to the Hill - Register Now!

National Brain Tumor Society invites you to join us on May 5 - 6 for Head to the Hill 2014, our annual Washington, DC based advocacy event.

Monday, May 5
Advocacy Training
The Embassy Row Hotel
1 - 5 PM
Lunch begins at 12 PM
Washington, DC

Tuesday, May 6
Legislative Visits
Capitol Hill
9 AM - 6 PM
Breakfast begins at 7:30 AM
Washington, DC

During this two-day event, you will:

• Learn about key public policy issues
• Speak with Congressional leaders to raise awareness for the needs of the brain tumor community
• Meet other brain tumor advocates from across the United States
• Interact with National Brain Tumor Society staff
• Make a difference in the lives of the 688,000 Americans living with a brain tumor

Your participation in these meetings will help policymakers better understand the critical needs of this community, and the policies required to ensure access to essential health care, availability of treatments, and the discovery of a cure.

Additional questions?
Visit our Frequently Asked Questions page or
Contact Lainey Titus Samant, Associate Director of Public Policy, at
advocacy@braintumor.org
617-231-6310

Feeling Better?

Melissa has had some great days...going from nothing to eat for months to very, very hungry.  She has had up and down days, but he steroids seem to have helped.

Still awaiting a firm diagnosis....should be any day now.



And here is a random funny...googled "Llama dance"...

Answers Coming!!!

So, Wednesday Melissa had her first appointment at Massey, after her doctors at CJW pretty much gave up on trying to diagnose her nausea issue.  We were both apprehensive of traveling to busy downtown Richmond for appointments.  We feared parking and very long waits.  We found much the opposite.  Traffic was not an issue and the hospital was literally yards from the exit for the interstate.  Parking was free, valet parking.  We walked right in, signed in, registered, and were back to see the doctor in minutes.  After the nurse ran through the usuals, we met Dr. Malkin and his nurse practitioner Dana.  They were on their game...so to speak.  Dr. Malkin and his nurse asked great, broad, probing questions.  You could literally see the gears turning in the Dr.'s head.  First impressions....this dude was the "House" of Neuro-Oncology.  After a thorough examination, he basically gave us three different possibilities and the means by which he would determine which it was.  One, of course, was some kind of re-occurrence of the brain cancer...not likely, just because that is what her previous doctors seemed to be looking for and could not find.  Another is related to a kind of re-occurrence of the cancer cells that is causing some irritation in the part of the brain that handles digestion. The last suggestion was something that I had "Google diagnosed" over a week ago.  Here is the link:  http://agajournals.wordpress.com/2013/03/04/a-rare-autoimmune-cause-of-intractable-nausea-and-vomiting/.  We are waiting on blood tests (to take about a week to get back) before we will be close to any direct diagnosis.  None of the causes were great news...but, they are treatable.  Funny, one twenty minute session and some blood work...can't wait to share this with her "former" doctors.  Melissa really, really liked her first appointment at Massey.  Who is the best care-giver/husband/Redskins-fan/Google-master?  This guy...that's who.

Boom.

Melissa Ate!

Melissa came out of yesterdays Dr. appointment ready to eat!  She ate, held it down, and feels better today....first time in months.  Still no diagnosis, but maybe we can relieve a few symptoms and resume some form of life.

Accused Of Lying

Maybe I am over-reacting just a tad...my right as a cancer spouse...but, yesterday I spoke with my wife's doctors, well, his's nurse.  Upon explaining that Melissa has continued to throw up, from 2 times a day (on a good day) to upwards of 20 times (on a bad day), she basically called us liars...saying, that "It is hard to believe, when her blood results come back not showing her THAT dehydrated."  I wanted to get crazy...say something like, "YOU THANK we are LYING about this sh..!"...or "Yeah, lady, we are pro-active about hydration...that doesn't make us liars!"...but, I was cool.  Just said, "Well, she is definitely throwing up and miserable...you can either find a way of treating her or I will find someone who can."  Boomzilla...

So, today I am likely going to schedule an appointment with the Massey Center at VCU in Richmond.

In the mean time...Melissa is still miserable and I feel helpless.

The Final Straw

Melissa had a terrible day yesterday.  She was miserable all day.  Enough is enough...today, I make some calls.  Either her doctor will refer us to someone or we will seek the help of our primary care here in town to find someone who can get to the bottom of this.  Her current doctors seem content with letting her suffer.  Of course, she is not crazy about more doctors, but after yesterday, she seems to just want this mess over with.