It's Been Monday All Day!
It makes me feel good knowing that we have such a vast network of people who love us. I again want to say how much we appreciate the donations on this site. I woke up very early this morning thinking about insurance so I got out my laptop and began typing out my arguments about how the insurance company is violating their own policies and how the state of Texas is wasting money in the long run and being lied to by United Healthcare. I got so angry that I just sent my first draft to Jason and said to hell with it for now. While I was in proton therapy Jason was on the phone with various attorneys and used my draft to send details of the case to said attorneys. We are now waiting to see if any of them are definitely going to take the case. This could obviously take years but this is not just about me, this is about everyone covered by United Healthcare. Apparently there have been class action law suits in many states and the insurance companies have lost this battle repeatedly. This is not an experimental treatment nor is it "off label" as United Healthcare has apparently told ERS. So infuriating!
My proton treatment went well and then we met some Kentucky friends for lunch. We will see them more tomorrow, they will be here all week! Tonight Claudia, Bill, Jason and I are going to the championship game between Villanova and UNC. I'll give you one guess who I'm NOT rooting for! No self respecting Kentucky fan would root for the Tarheels unless they were playing Duke.
In the afternoon we were supposed to have an appointment with my oncologist, however, we were stuck seeing his nurse. This woman has screwed up various things for us, many of which have been very simple issues like paperwork and at least one that would have delayed my treatment had I not been pushy. I tried to be open minded when she first came in the room today but after spending close to an hour with her I am going to insist that I be able to see my actual doctor from now on. I was so frustrated with her inability to answer basic questions, her tendency to change the subject, and her insistence that I do all treatment in Lubbock once this round of treatment is over. I've been told repeatedly by my surgeon that all treatment should be done here and that I will be scanned every 4 weeks for the first year. I have a freaking team of doctors at the top of their field and she's giving me contradictory information that I should move all treatment to Lubbock and that I will get scanned every 8 weeks. I'm still angry.
Tomorrow I see my radiologist so I will ask his advice on what to do about the situation in oncology. He is an important member of the team so I'm sure he can tell us how to proceed and get reliable information. Now if I can just stop the steam that's coming out of my ears for tonight and focus on tomorrow's appointments. I guess some days are more eventful than others...
Comments (7)
Time for meditation. Stay calm, my friend, stay calm.
Boy, Shannon, Bob nailed it for you...meditation, calm, breathe!!!!!! I'm off to Lubbock for Mon. night...........we'll all practice some deep breathing for you! ;-) Of course, you're going to the ball game tonight, ENJOY...your comment about Duke, cracked me up! Love, Love, Love
Heck, I would root for Kentucky or Tennessee over Duke.
Yikes, this nurse sounds dreadful. Jot down her misinformation so you have it handy when request to see the Dr and not her. Very disappointing she is in that position. Hope the oncologist can give you a treatment plan in writing so you can show it to anyone who questions you -- like her!!! She just give us a bad rep. Have fun at the game. Sounds fun ! Love ya, N
So jason, Claudia, Bill, & I got to see the game which made me feel a lot better. Jason and I jotted down all the things the nurse said that we're dreadful so that we can report it if needed. For example, she stated that I can look forward to 9 additional months of life with radiation. Given that I've been told of drastically different prognosis, this was very upsetting.
Sounds like she has just enough knowledge to be dangerous. She ignored the fact that you are not 64 years old, that you are not a man, that your lesion was in the right, temporal lobe, that the surgeon removed nearly 100% of the tumor, that you are being treated at MD Freakin' Anderson, that you are Shannon "Badass" Rinaldo, etc., etc., etc.
I am so sorry about the nurse. Todd's main treatment was radiation. When we started with chemo, his MDA oncologist gave Lubbock the recipe to use which was fine, but when it came to radiation, his radiation doctor said there was no way to do treatment in Lubbock because of the level of technology MDA had for head and neck cancer radiation. So we stayed in Houston for radiation and did all the requisite scans in Houston with his radiation oncologist. On occasion we would meet with the oncologist, surgeon, and dental oncologist. Sounds like this lady is either new or clueless about the number of doctors and services you have relationships with at MDA!