Forgive Me, I've Experienced Lots of Hits Today
I'm so glad today is Friday. Last proton treatment until Monday. Last yoga session until a week from Monday. No gym today or for the next few days until Tuesday. All I have to do is relax, engage in some at home yoga, meal planning, and help Jason get ready to go to Lubbock for the week. I love my family but I think it will do them (and me) some good to get home for a few days. There's lots that needs to be done there. Jason will get back into the office and Aidan will be able to go back to school for a week to see all of his friends. Jason has been working from here as much as possible and taking sick/vacation on days he's helping me. Aidan has been doing as much work as possible for the last several weeks. Although there has been a lot of joking about this being the "brain tumor vacation," that's just been us trying to make the very best out of a terrible situation. If we lose our senses of humor we lose this battle for ourselves, but also for our children who are depending on us to set the emotional stage. It may not be how others would handle it, but it's how we are handling it. There will be no laying on the floor crying in this family-- we just don't do things that way! We stand up, we pull ourselves together, and we laugh about anything we find to laugh about-- especially inappropriate things. And quite frankly, I really don't care who criticizes us for it.
We got word this morning that United Healthcare has denied our appeal for the proton therapy, stating that it is a "medically unnecessary procedure." Again, if I was on faculty at U. Texas or Texas A & M I would have Blue Cross/ Blues Shield (the insurance I chose when I came to TTU and it was taken from me as an option a couple of years ago). BC/BS covers proton for cancers in or near crucial organs. Their policy explicitly states that the brain is a crucial organ that should be protected from traditional radiation. We have one more appeal and then we have little choice but to sue both the insurance company and the state of Texas for the denial of coverage and for not offering all state of Texas employees the coverage they deserve. Our attorney says that in court, fairness almost always wins out and this is just a question of equality. What is it about me that makes my right to proton therapy different from someone at UT, Texas A&M, or other universities in Texas? In the meantime, we have spent Aidan's entire college fund. On the bright side, we have the best healthcare available and bright kids who might be able to get scholarships (in addition to offering sub par health insurance and taking other money making opportunities away from us when we are down, Texas Tech also offers $600 per year in scholarships for faculty kids-- wow!). We also have good salaries and can live paycheck to paycheck for now without having to sell the house. Jason says we are currently at net zero, a place we haven't been since graduate school. Yes, folks, it's not just the working poor who are one major medical crisis away from bankruptcy! You too could be in our shoes!
OK, so I realize I'm not quite as chipper as usual today. I'm just really ready to be done with treatment so that I can focus on a few other things that need my attention. I just don't have any time for insurance lawsuits and worries about work related issues that may or may not be happening. I also just do not understand how two people who have worked hard to earn Ph.D.s, have worked hard for the state of Texas to always do what's right, and who have never lived above our means could end up in this situation. I think I'll see if Jason will take me to see a comedian tonight so I can get some laughs...
Comments (20)
Love you guys.
Damn Shannon, I hate the entire situation, but if anyone can handle it (with grace and humor to boot), y'all can! I trust that it will work itself out in the end -- it HAS to. In the meantime, you do WHATEVER you need to do to get well and stay sane!! Much love and prayers your way everyday!!
Shannon this is just so wrong on many levels. My prayers are with you stay focused on getting strong and healthy. The rest of this will eventually be behind you. You being healed and being around for your family for years to come is the real blessing from this horrible position that you find yourselves in. Praying for you super woman!
We love you and know you will persevere. You will win the battle with the insurance in time as well as the battle with "this monster". We hope you have a restful weekend.
You know what, Shannon? You don't always have to be chipper. Sometimes you get to scream, "THIS SUCKS." We're here for you and your family no matter how you feel and what you want to say. You've earn it, my friend! Now, go find a comedian. You deserve a laugh. xoxo
Hugs to you all!!! We're always in your corner and I hope the rest/break will do some good. Love ya!
Shannon, if anyone has a chance at winning this case, it is you! You keep fighting the good fight, and don't give up! Remember His eye is on the sparrow, and also on you. : ) Praying for you and yours daily. We miss you.
I am with Ali- you have every right to not be chipper! I can't image anyone would criticize the way you guys are handling this situation! I think it is absolutely AMAZING! I find you guys truly inspirational and words cannot even begin to express how much so! I would send out a strong word or caution to the insurance company and state of Texas.... They don't know who they are messing with! They better fasten their seat belts- it is going to be a rough ride for them!!! Hope you find a great comedian and have lots of great laughs tonight. Laughter is great medicine:) Looking forward to seeing Aidan back, even if it's just for a week.
I still cannot believe this insurance fiasco! Once upon a time when I was a budget examiner with the LBB in the 19%@XXXs, all the state universities were under the University of Texas system, therefore everyone was treated the same. I do not know when this changed, (probably A&M got their panties in a wad for having to be "under" Texas) but anyone can see the need for a change. Not to have an option for health coverage is against all the rational behind the "Obamacare" and I for one will love to see you collect treble damages when you win the lawsuit. I am so sorry you are having to go through this, but I know it won't be long before you all are right back where you were a few years ago regarding your savings. I know from experience how hard it is to "just keep going", but what else can you do? And sometimes you have to lay the sense of humor down and cry. Not for days, but a good cry is good for the soul, and you can call me (540-578-6860) and cry all you want. I am so mad that I don't have the means to hop on a plane and come see you, but I will be in OKC visiting my daughter and her "whatever she is calling him today" and my grand babies before the fall semester starts, and will come up there and hope I can time it for when you are there. I am confident your lawyer is a good one. We were fortunate to meet a lawyer who is famous for collecting for wrongly convicted individuals and he was right there from Lubbock. Lubbock has great minds, but maybe all the people in TTU HR or whoever makes the decisions regarding people's livelihood and that the brain is not a "crucial organ" SHOULD BE FIRED!! Puhleeeez! I am right there with you in being hot about this and will do whatever you want me to by ways of calling or writing anybody with any kind of influence. I love you and want you to know its ok to let your guard down, especially around those who love,love,love you!!!
You have every right to feel the way you do and more. (And a good scream should do you good.....). You are courageous and an inspiration to so many people. I know how hard you and Jason have worked to care for your family and yes, it is not fair. Neither is your cancer. I will constantly send positive thoughts that soon the tide will turn.
I think you deserve some chocolate and a long nap. (With a pre-warmed blanket- make Jason stick it in the dryer 1st). It may not solve anything, but it'll pass some time 😕
Wow! I had NO idea that the brain was not a "crucial organ" - what?! Ridic. You have probably seen this one, but if not: http://provisionproton.com/blog/tag/does-insurance-cover-proton-therapy/ A battle is going on in Tennessee over this very issue. I also saw this, again you probably hit on it, but it details appealing proton therapy specifically - sounds like you are not alone: http://protonpals.net/wp-content/uploads/2011/05/APPEALS-STRATEGY-DOCUMENT-02-11.pdf I love your reading your posts, and check in daily - thank you for posting. I am pretty sure there is not like a life script we were all handed telling us how we might best deal with brain cancer should it affect us...right?! You are making it work day by day in a way that is best for you and your family. Enough said! I will say there is clear research that humor helps boost the immune system as well! Win-win, it is right for your family and it boosts your immune system.
May I suggest a theme song for the day: https://www.youtube.com/watch?v=h3ycreJq5Uo Much love, Eva A. I am Invincible by Cassadee Pope [Intro] For my girls The fighters, the warriors [Verse 1] Broken glass inside won't cut through me Pain behind my eyes; I turn into strength [Pre-Chorus] Oh, I will fight, I will survive [Chorus] I'm invincible I'm unbreakable I'm a diamond cut to last I'm unstoppable I'm a hero Like a phoenix from the ash Whoa, whoa, whoa (Invincible) [Verse 2] Cracks run through these walls, but they still stand strong, oh Heart covered in scars, but my fear is gone [Pre-Chorus] Oh, I will fight, I will survive [Chorus] I'm invincible I'm unbreakable I'm a diamond cut to last I'm unstoppable I'm a hero Like a phoenix from the ash Whoa, whoa, whoa [Bridge] Nothing's gonna make me break or shatter No one's gonna tell me I won't matter, no I won't let you Time is running out, keeps getting faster Gotta find a way, rewrite the answers Til I can say... [Chorus] I'm invincible I'm unbreakable I'm a diamond cut to last I'm unstoppable I'm a hero Like a phoenix from the ash I'm invincible I'm unbreakable I'm a diamond that will last Whoa, whoa, whoa Whoa, whoa, whoa Invincible
The problem is that the brain is not a crucial organ for politicians or insurance executives.
Shannon--I'm praying for you and your full recovery. I applaud your ability to keep fighting and you are doing a great job handling all of this. Hang in there. Love, Debbie
You are coping so amazingly, incredibly, fabulously well with everything! Remember that! I loved the mantra that you posted the other day, and other mantras (grant me the courage ...) no doubt are getting plenty of use every day. I'm so sorry to hear that the appeal was denied. It is neither right nor fair but I'm confident that justice will prevail even if on a longer time course. I LOVE the sense of humor you and family have maintained. I would not be so resourceful! Remember always self-compassion as well!
Then there is the obscene amount of money the CEO of United Health makes every year. People need to be aware that top management at these insurance companies make obscene amounts of money and then deny care for their customers. Disgusting. But, beside that, you did some great venting in this update. You absolutely earned every word and then some. Going out to see a comedian before Jason heads back to Lubbock is a great idea. We have at least one, maybe two Eddy Izzard DVDs that we can send back with Jason--and Blazing Saddles and some other funny stuff plus about all of the Calvin and Hobbs books. More than willing to send it all back with Jason. That sense of humor is a large part of what will guide you through all of this to victory! Lewis Carroll was right to coin the work chortle!
hugs and prayers to you all...love u
It's ok to be mad, disappointed & scared. And this is a good place to voice those feelings because we all love you guys & surely would not judge. I can't even imagine what you guys are going through. Sending love & prayers.