Quick update from Tyro

[tyro]

I'm so sorry we have to meet again in such trying circumstances, and this compounds my regrets that I came so close to being able to meet you when I was in DC for the 2016 forum lunch. People come and go from here and we often don't notice until someone, be it the poster or one of our other co-conspirators in this enterprise remark on it. You are one of those whose absence I had noted and wondered about, and missed their presence. Strength to the hands of your doctors but more so to you as you fight this. I know I am not alone in looking forward to your safe and healthy return both here and to a normal daily life. My fond thoughts are with you.

Thank you, Mike.

T

[+ sync]

The grace and courage that you are displaying leave me without adequate words of admiration and inspiration. Here is hoping that you will be updating us with some more positive news very soon.

 

My best wishes.

[tyro]

The grace and courage that you are displaying leave me without adequate words of admiration and inspiration. Here is hoping that you will be updating us with some more positive news very soon.

 

My best wishes.

Oh geez. Big sniff. Thank you.

T

[+ Charlie]

Welcome back! I hope you can stick around for a long time.?

[tyro]

Welcome back! I hope you can stick around for a long time.?

Me toooooo!

T

[+ honcho]

I'm so sorry to learn of this major health challenge on top everything else that's happening ...

I will certainly keep you in my positive thoughts, and will visuallize the best and speediest possible outcome.

[tyro]

I'm so sorry to learn of this major health challenge on top everything else that's happening ...

I will certainly keep you in my positive thoughts, and will visuallize the best and speediest possible outcome.

Thank you so much! Big long-distance hug.

T

[+ FreshFluff]

@tyro You’re in the Midwest, right? How is your insurance? Could you ask your doctor refer you to someone at Mayo who is doing cutting edge work?

 

Being assertive with medical staff is difficult in the best of times and more so when you’re worried and not feeling your best. But it’s often the best way to get results.

[tyro]

@tyro You’re in the Midwest, right? How is your insurance? Could you ask your doctor refer you to someone at Mayo who is doing cutting edge work?

 

Being assertive with medical staff is difficult in the best of times and more so when you’re worried and not feeling your best. But it’s often the best way to get results.

My insurance is crap, to put it bluntly. No oncologists from University Hospitals or the Cleveland Clinic are in my HMO, let alone anyone out of state. Of course, when I had to renew/choose my insurance plan on December 15th, no one had even mentioned the word cancer. The theory back then was that maybe I had Chron's and MS (which would explain the stomachaches, small intestine irritation, ulcers, dizzy spells, and double vision.) What a difference a few months makes......

T

[orville]

I don't know you but I wish you well, and all the best.

When anxiety crawls on you, remember that life is beautiful.

 

[+ FreshFluff]

My insurance is crap, to put it bluntly. No oncologists from University Hospitals or the Cleveland Clinic are in my HMO, let alone anyone out of state. Of course, when I had to renew/choose my insurance plan on December 15th, no one had even mentioned the word cancer. The theory back then was that maybe I had Chron's and MS (which would explain the stomachaches, small intestine irritation, ulcers, dizzy spells, and double vision.) What a difference a few months makes......

T

 

I am really sorry to hear about the insurance, Tyro. This is a long shot, but do you qualify for Medicaid?

[+ keroscenefire]

Haven't had the pleasure in meeting you Tyro either virtually or IRL, but wishing you the best with all your medical appointments. Hoping it all ends up going very well for you.

[Lookin]

Had my own bout with cancer (prostate) a few years ago and learned that it's its own project and that no two are exactly alike. You sound like you're well into the early part of learning all you can about your particular situation. It can be overwhelming at first but getting the unknowns out of the way, as you're doing, is a really good start.

 

I think having an advocate could be a big help. A friend or family member may work but even a fellow worker could be perfect. The medical part alone can be a full-time job for you. Having a second pair of ears at your appointments is worthwhile. That person can ask questions that you didn't think of and, in some cases, ask the doctor to explain why (s)he's doing something or not doing something. (If you can't arrange for someone to go with you, you can record your appointments on your phone.)

 

An advocate might also take on the insurance company, while you concentrate on your health. I think even the worst insurance plan has the ability to refer you out-of-network if necessary, and your advocate can help make them understand when it's necessary. ? Your state probably also has an insurance commissioner who can help.

 

It could be that your current doctor is perfect for the job at hand but, if you want a second opinion, your doctor should encourage you and your insurance should pay for it. Worst case, I think you'll find that paying out-of-pocket for a half-hour consultation with even the Mayo Clinic will not break the bank. The advantage to connecting with one of these specialists is that, if it ever makes sense, they'll be aware of things that may still be in the research stage.

 

The day I was diagnosed, I started going to one of the best support groups in the country and heard a wide variety of experiences over several months before making my treatment decision. If you can find a support group, it can be a big help.

 

And, of course, you have us. ???

 

I know this sounds like jumping into the deep end because there's a lot to learn with any cancer. As one of the support group members told me at my first meeting, the first part is usually the most confusing.

[+ FreshFluff]

I agree 100 percent with Lookin. For Mayo, you could call financial services and see if they could reduce the cost of a consult.

 

Have you tried calling the doctor’s office and trying to get the appointment moved up. You could explain the situation and ask them to talk to the doctor directly. They should be able to squeeze you in early this week.

 

I think an advocate is a great idea. You could even conference someone in virtually.

[tyro]

Thank you to EVERYONE who has replied to this thread! FreshFluff and Lookin, thank you for the very logical suggestions. I have seen both an oncologist and a cancer surgeon out-of-network, out-of-pocket AND got a procedure done by an out-of-network provider. (Un-ironically enough, it was the EUS done on January 6th -- the only procedure that yielded something "real" rather than images described as "unremarkable.") The aforementioned procedure was supposed to be authorized beforehand and was not (that's its OWN story...) resulting in a bill totaling 65% what I grossed last year. My insurance seems to be taking care of that now, but it was a pretty major stressor for a bit.

 

As far as getting support, my dad has been driving 100+ miles to my place to take me to most of my appointments. Because of the dizzy spells, I don't want to drive more than 15 miles one way if I have to. He has been my extra set of eyes and ears, which has been great. My sister hooked me up with a health advocate organization who helped me get through to insurance about the previously unapproved PET scan. I doubt it did any good because it took a new request from a totally different doctor, but it is good to know organizations like that exist. Speaking of organizations, Imerman Angels is supposedly finding me a support mentor around my age with a similar type of cancer, but I don't know how successful they'll be; I'm a bit of a unicorn. I will ask my palliative care specialist about any/all local support groups too.

T