Frustration, Anxiety and Adventure

Frustration, anxiety and adventure pretty much sums up the past three and a half weeks for Lee and I. You may recall that on my last visit with Dr. P, he decided to refer me to an interventional radiologist to “intervene” with that nasty tumor in my liver that is consistently giving chemo the middle finger. The doctor Dr. P referred to me to is the ONLY radiologist in southern Arizona that performs the latest and state of the art procedure to deal with inoperable colon cancer tumors in the liver.

After six days passed without any contact from the radiologist I contacted the person at my oncologist’s office who processes referrals. She had not done it, apologized and did it that afternoon. The next day I heard from the radiologist office and an appointment was set within two days. Unfortunately the radiologist’s office called the next day telling me that they were not approved by my insurance company since the were out of my HMO network. Medicare routinely approves this procedure and the radiologist accepts Medicare patients, so the kink was just the out of network issue. Lee, my trusted advisor, informed me that the insurance company legally must approve the procedure if it was prescribed by my oncologist. I would have to request an Out of Network Exception. I contacted the insurance/referral person at my oncologist office. Her advice was to refer me to an in-network interventional radiologist (who did not do this procedure) who would refer me to the out of network radiologist who does this procedure. Another week passed and I did not hear a peep from anyone. I called my oncolgist’s office, she said she would follow up. I called the in-network radiologist’s office and was told the radiologist wanted to talk to my oncologist before she could make an appointment for me. In the meantime I had been talking to my oncology specialist case manager at my insurance company. Her job is to help cancer customers by providing resources and hand holding. I asked for her help with the out of network exception, I was thinking certainly she knew the procedure. She told me to have the radiologist that Dr. P referred me to apply for an out of network exception. I called the radiologist’s office and they indicated they seldom make such a request, but she would in my case.  After another  several days passed, I called my insurance case manager to see if she could provide me an update. She indicated that she couldn’t help me as she didn’t have any access out of network exception status and referred me to the insurance’s normal customer service number. At that point I had a VERY intense conversation with my case manager. It was so intense that I didn’t even swear. I know that is out of character for me, but that was how intense it was. I reminded her that my clock was ticking, that my tumor was growing and as it grew there were fewer options available to me until there were no options. We both know the procedure legally must be approved and the fact that my “case manager” can’t or won’t help me with this needless delay in a life or death situation is obscene. I called the insurance customer service and was told that my oncologist needed to make the request, not the radiologist. ARRGH!!!  Our only respite during this time was a visit by Mark and Ellen,  dear friends from Oregon.  It was a much needed distraction, and we had a grand time with lots of laughter. Mark and Ellen joined us for one of my book presentations and worked the crowd for massive book sales. Mark and I talked late into the night, it was very therapeutic. Evidently my “come to Jesus” talk with my insurance case manager made a difference.  She relayed my “thoughts” to her management about their process and she was allowed to get involved. She called me and told me my request was being expedited and helped the radiologist navigate their process. I wonder what happens to patients who are not sophisticated and strong enough or who do not have such a person to advocate for them? Of course that is a rhetorical question, they get screwed.  I am very fortunate to have little Lee. I have no doubt that she will be a fierce advocate for me if ever needed.

Armed with my CAPE and Duck shirt, I do a presentation of my book. Lots of laughter and a few tears.

As Lee and I embarked on a planned road trip to southern Utah and northern Arizona, we agreed end to put all this crap out of our mind and have a good time.  The afternoon of the first day of our trip the insurance company called letting me know the consultation had been approved withe the desired radiologist. I immediately called the radiologist and made an appointment for September 22.  Time to enjoy the vacation!

After an overnight stop in Kingman, AZ we headed to Tuacahn.  Tuacahn is an intimate amphitheater nestled in a red rock canyon in southern Utah just outside St. George. Their season is comprised of three Broadway musicals interspread big name concerts. The cast of the of the musicals are world class singers and stage actors. We saw Tarzan with music by Phil Collins.  It was outstanding and the special effects were fantastic, I highly recommend this venue. 

As they prepare the stage, this was taken moments before security spotted me. I was to fast for them and escaped!

On to Page, AZ to explore the amazing topography.  Our first adventure was aerial overview in a little Cessna 207 including Lake Powell, Glen Canyon Dam, the Rainbow Bridge , the Horseshoe Bend

The next day we hopped in a Hummer for a nine mile off road trip through soft fine sand and over rocks to the Secret Canyon, a slot canyon in the Navajo nation. I don’t have a bucket list, but if I did, this would be on it!

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28 thoughts on “Frustration, Anxiety and Adventure

  1. everyone definitely needs an advocate to navigate red tape and it is ridiculous the hoops insurance companies make us jump thru! Glad it worked out and your vacation looks amazing!

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  2. it is just obscene the way they have you jumping through hoops and throwing up road blocks instead of facilitating the process. makes me mad! so good you could have such a wonderful trip to enjoy while dealing with all this. i love the photos.

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    1. I had thought they only approved the consultation, but when I got home and looked at the letter they FedX’d to me, they approved the procedure. So if the doctor thinks it best, no further approvals are necessary.

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      1. that is good news. pays to be a tenacious (sp?) bull dog. but there’s something so wrong about having to be assertive and super well informed to get things rolling when you are also the patient. I guess we have to have a single payer system so one isn’t tossed around like a ping pong ball.

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  3. Glad that the cluster mess is cleared up for the desired IR. Loved the pictures but my favorite was the duck and cape photo. So impressive and so you.☺️

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    1. Thanks. I’ve made some changes to my presentation and the cape and a duck shirt are part of the new schtick. I get “boos” for the shirt πŸ˜„ until I explain the wisdom of the duck. I love when the audience reacts

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  4. I am so sorry to hear about your maddening bureaucratic boondoggles. Makes me want to scream, too–but I’d be including the expletives. People burdened with your challenge need support–a lot of it. I have a terrific interventional radiologist up here who has worked on me twice.

    Glad your response was to go to the desert. Southern Utah is close to paradise. Keep after it, my friend.

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  5. Wow, God Bless you both!

    My daughter has been courageously battling that c….. Caca all year also… Bilateral mastectomies scheduled for this week. …

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  6. Jim, you are so right Lee would be my choice for an advocate. She is your rock. Hugs and hats off to Lee. Of course, having the duck behind you helps a lot. What an awesome vacation. Dean and I go to Zion alot so he can hike. So I think we need to check out that canyon. Wow it was breathtaking. So glad you escaped the Security at the concert. Thanks for all the updates. Big hug for you and your wonderful Lee. Earline

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  7. I want to act on that stage! I want to see those canyons! Amazing, gorgeous. I have never even been to the Grand Canyon. SO MUCH TO SEE. And your description of your weeks-long delay of treatment simply due to intransigent administrative incompetence was painful. We will toast you on the 22nd with a nice Tempranillo.

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  8. I surely empathize with your having to bulldoze your way through red tape, which can be incredibly frustrating even if you’re not sick. I am advocate for my mom for healthcare and other personal business and sometimes I wish I could climb through the phone and strangle someone! Love your vacation pictures (especially the slot canyon…kinda scary), and your eternal optimism!

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  9. So GLAD to hear that the procedure has been approved along with the consultation. Persistence Pays!! But all that crappy ted tape…yes, it has to be included in your next offering.

    I love the beautiful red heart enveloping you and Lee at Secret Canyon…it’s no secret though that you both are among the “Young at Heart”!

    Some years back, John and I visited Moab Utah for Opera on the Rocks?? So amazing to see a piano out there in the wilderness and then to hear the sound of music in that sacred space…In our little boat on the way back..the soprano serenaded John. He was in 7th heaven!

    We’re inspired to to check out your venue in St. George….and that awesome Cessna ride too!

    I hope that you found a good places to dine in Pine Top.

    Cheers!

    Liked by 1 person

  10. Good for you for NOT giving up on your Ins. Co. about your referral. Think of the poor elderly who DON’T fight for WHAT they should GET. Vacation pics are fabulous. Thanks for sharing. Sandi

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  11. Jim, I am currently living in Denver now and am spending 18 hrs a day getting settled. I am in good health and it is practically killing me. I am feeling like I never should have attempted this move. I just had a chance to read your Email and I can only say it made my blood Boil!!! How broken can the medical system in this country get? I think you should publish this where ever you can and include it in your book presentations so people can see first hand how our lives are treated so cavalierly by the medical professionals and the insurance companies. This is outrageous and no one should have to be faced with this. I think of you every day and admire the strength and perseverance of you and Lee. Please keep up the fight Jim. You are a real winner and your life is making a difference which will lead to a better world for all . Enjoy hearing from you and say hi to Lee. >

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