Melissa's Obituary

As most of you who follow this blog already know, my wife Melissa Lynn Barr passed away from her struggle with Brain Cancer this past Sunday.

HER OBITUARY

I will find the words for a proper closing post when I can.

 

Update - November 6th

 It has been a few weeks since my last post.  There was a gradual decline over the past couple weeks, with more sleeping, less eating, and some continued loss in cognitive ability.  There has been a considerable decline in the past 24 hrs, though.  She can't really stand or walk safely anymore.  I am not sure what this means, as far as time line or anything.  They did warn me that when she starts to decline, it will likely be pretty rapid.  All prayers and positive vibes are dearly needed and welcomed.  

Update

I want to thank everyone who donated to the GoFundMe my friend started or who sent direct donations.  I can't even explain to you how much it means.  I hate that we are even in this position and anyone who knows me knows I am usually the "helper" and am not good as asking for help.  It came in at just the nick of time.  I also want to thank our volunteer helper, April.  She has been amazing and I appreciate her more then I can express in words.   

Things are progressing, I suppose.  She is sleeping more and when she is up, her care is a lot and she is stubborn as a mule.  They brought in her hospital bed this week.

Anyone who cares to visit, should make plans to do so soon.  If not, no worries.  She tells lavish tall-tales and stories including most of you guys all the time.  Most of you guys have visited her in her mind just about every day.

Update - 2 Weeks Down

 I am sorry that I have not kept folks more up-to-date on the past couple weeks, but health wise, no news is good news.  Her condition has degraded some mentally, but she is still smiling, eating, and enjoying all the spoiling going on.

We recently received some great vibes, answered prayers, and an awesome gift!  

Great Vibes...too many to mention.  Thank you for everyone reaching out, the cards, the calls, the boxes...you have no idea how much they mean to Melissa, me and Michael.

Answered Prayers...our gofundme started it's first pay-out.  Cancer and just trying to spoil her has me just spending money I normally would not spend..so the timing of the first payout of this fundraiser could not have come at a better time.  The you to everyone who has donated.  Special thanks to Tammy Trivett for starting that fundraiser and sharing it on Facebook.  It is still open to donations - just click HERE if you want to donate.

We received an awesome gift from Noelle C. Loving "But Tomorrow" Foundation,  They provide assistance, education and support services to organizations, individuals and families, whether medical-related or otherwise, to improve the quality of life throughout the community.  Because of their gift, I can take better care of my wife and even created some memories this past weekend, with a day trip to Virginia Beach (to get takeout from her favorite place, Chix).

Stepping Up, Thank You!

 I just wanted to post a huge thank you for all the folks that have reached out either to help, give best wished/prayers, and just share their love.  The volunteers, donations, prayers, well wishes...they are all just awesome and heartwarming.

I would thank every one of you individually on this post but I would be afraid I would leave someone out.

Crater Community Hospice has been amazing, too.

As much support and help as come in already, unfortunately it never seems like enough with brain cancer (or any cancer, I would imagine).  

Click HERE to reach a GoFundMe started to help us with expenses and such.  Give only if you can afford to.  Many have mentioned wanting to avoid the percentage GoFundMe charges for their services, so I also have a PayPal Account under cwbarr01@gmail.com.  

I can't even begin to tell you what unknown expense is hiding just around the corner...so every penny helps!  I also hope to spoil her with every food she loves while she can still enjoy them.

Help Wanted!

 Medicare denied the appeal for a 24hr care facility and even for home healthcare nursing...leaving her care pretty much entirely up to me.  We can not afford to pay for a sitter, a nursing home facility, or in-home healthcare.  Hospice care is engaged but they really don't do nears as much as I expected.

I sent in an application for Medicaid weeks ago, but they have weeks still before it will even be processed...and based on the luck I have had recently, I doubt that gets approved either.

So I need help!

Help with someone to sit with her while I work.

Help finding resources to help pay for her care.

Help financially.   (UPDATE - GoFundMe started - Just Click HERE)

If you can help, just message me, text me, or send an email to cwbarr01@gmail.com.

Just taking things a day at a time, for now.

What Really Matters

 Like anyone dealing with Cancer, I have done all kinds of research.  Recently I read up on a topic I had hoped to avoid for a long time...end of life care.  The very first thing I read was: "Be brave enough to have the conversation on what really matters."  Wow...that's some deep shit.  

I have spoken with her doctors about her current condition.  They said though treatments might make her MRI's look better she will never regain the cognitive functions she has already lost.  The treatment side effects, how they are administered, and the amount of effort they would take would certainly put a major strain on her...or as she put it, more torture.  All those pokes, needles, IV's, doctors offices...all for maybe a few weeks or a month more...all with the same end result.  All that suffering for little-to-no results doesn't make any sense.  I have talked with her, her mom, her closest friend and we have all decided it is time to enter palliative care.  Her doctors and all of us feel that what really matters here is her quality of life.  Palliative or hospice care will provide her with the best overall quality of life for the little time she has left. 

This is by no means giving up or in to cancer.  Cancer is not a battle, despite the name of this blog.  No one wins or loses.  You can't fight something that is out of your control...all you can do is deal with whatever it throws at you.  That is what this decision is about...dealing with the situation, focusing on what really matters...quality of life and the quality of the time left to live.

 Now is the time to send your prayers, positive vibes, good energy...whatever it is you subscribe too, it is all welcomed and so needed.  If you are taking the time to read this, we love you!

Inconvenient Cancer and Medicare Loopholes

 If you ever want to know just how bad our medical insurance system in this country is, just get cancer as a young adult.  Get sick in a unconventional way with inconvenient timing and need any sort of specialized care...you will quickly discover is Medicare and just about any health insurance policy is laden with loopholes and sneaky ways to deny coverage for anything that doesn't fit their narrow minded criteria.  Meanwhile, a young adult and her family are fighting for their damn life over here.  Doesn't matter how hard you work or how successful you are when cancer comes knocking.

Medicare has denied coverage for a 24hr care facility for Melissa.  We are appealing that decision.  Without that coverage, there is no safe place for her to be discharged and access to her treatment and care is compromised, no to mention just her general safety would be compromised.  It is bad enough that we have to fight cancer and for our lives...but to fight corrupt health insurance policies at the same time too?  

Dear Medicare,

Is using any form of common sense and/or common decency too much to ask?

Sincerely, 

ANY Disabled Young Adult Fighting Cancer  

Non-Update Update

 I wanted to have an good update posted days ago, but poor communications from her doctors at VCU Medical Center has delayed having any new information to share, health wise.  I get calls from the discharge nurse all the time, discussing our discharge plan, but until we have a care plan in place or they give me any of the information that is needed to make these decisions, we are at an impasse.

When I know more, you will know more...just know, I am full on giving those doctors hell today.

Biopsy Results Are In.

 We got the results of Melissa's recent biopsy and they are not good.  She now has a grade 4 glioblastoma mutliforme...a terminal diagnosis.  😢

Still awaiting the specifics for a treatment plan or if treatment will even be an option.  

Cancer is a ruthless bitch.  It just takes and takes.  I wouldn't wish it on my worst enemy.  Tell the ones you love that you love them all the time.  Make those moments, because in a blink of an eye, it could be gone.

Update...It's back.

 It has been a few years since my last blog post.  This blog was a vital form of communication during our last battle with Melissa's brain cancer.  It also served as a place to me to dump feelings, thoughts, and information...my therapy, if you will.

The BRAIN CANCER is back.   😢

We found out in early March that there was some regrowth that prompted her doctors to move up her MRI schedule.  Before the next MRI got here, there were issues.  Last Tuesday, I noticed she was confused and not acting normal and promptly contacted her doctors.  A recent MRI showed that the cancer was back and it was aggressive.  It has crossed the mid-line in her brain into her left side and is causing behavioral and memory issues.  She also is exhibiting weakness on her left side.  They have done a biopsy and we are awaiting the results.  They are talking 24 hour care is needed, due to her condition.  How does anyone afford that?  I will keep you posted and will let folks know how they can help.