Breakthrough Yesterday!

Health: All my doctors agree that UC Health is the only reasonable regional choice for my surgery, but they are not in my HMO Network, so getting around that has been the focus of my attention for the past week. There was a major breakthrough yesterday! A Project Coordinator at UC Health called me, following-up on UC Health’s refusal to accept my referral (due to the insurance issue). It turns out that their Esophageal Disease Center has established a streamlined process for obtaining out-of-network referrals from all major insurers. He has taken the lead in expediting “Gap Exception” approval from Humana, working closely with my Primary Care Provider’s Practice Manager.

So, it appears that I don’t need to be on the phone 2-3 hours a day anymore! However, I’m still taking personal responsibility for keeping all the doctors and other participants updated with the latest status. I’ve decided to name them Team Doug, and have offered to name them in my blog if they wish. I’m also asking them if they are willing for me to publish photos.

Fitness: One big factor in my favor is that I’ve been working-out much more the last few months, trying to get into shape for longer backpacking trips. My insurance covers fitness memberships, so I joined Anytime Fitness in Columbia-Tusculum (very near my house) in November. The franchise owner is Charles “Mr. Clean” Sippial, who runs a tight ship, while being one of the nicest guys you’ll ever meet. Here he is in action, keeping his equipment clean and germ-free:

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Charles in action!

Friends: It’s great to have friends, and for the first time in my life, I’m blessed with multiple groups of friends! I moved around a lot in my career, never staying put long enough to put down deep roots. I’ve been in Cincinnati more than 16 years now. The earliest group we picked-up with is the “Arthur’s Group”, that used to get together at Arthur’s tavern every month on First Fridays. It’s more occasional now, and the locations vary. Jen’s sister has hung-out with this group for decades, so that was our connection to them. A few of us got together last night at the new POP (Post Office Place) bar in the East End:

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At POP: Front to back: Jen, Steve, Mike, Bill, Debra and Mark

Unfortunately, we’ve lost three from group due to illness in recent years (including two from cancer): Our beloved Allison, her husband Lee, and dear Brother Gayle. They may be gone, but they are certainly not forgotten!

 

Who Dey Day

Surgeon Update: I’ve spent 2-3 hours per day the last three days trying to piece-together varying reports on how to find a good surgeon, and how to get Humana to pay for an out-of-network surgeon, which is what all my doctors recommend.

The supposedly simple process mentioned in my last email has turned into a convoluted morass. Highlights: Humana has outsourced the process for getting approval for out-of-network coverage. They will only talk to my Primary Care Provider (PCP), who has the least technical expertise to represent my case. I can only talk to Humana. I’m trying to reconcile differences between what they are telling me vs. what my PCP hears from the outsourced folks. I had to escalate my case to PCP management because the people handling it had the attitude that it was a lost cause.

I asked for and got super-duper help from an Oncologist Social Worker. She is doing lots of legwork, including identifying two in-network surgeons that have some experience in the type of surgery I require. What’s missing, and what I’ve asked all the doctors to help with, is getting a concise but thorough explanation as to what qualifications are required or a surgeon performing a distal esophajectomy, along with associated risks.

Fortunately, Nurse Jenny (my wife) came through again this morning, finding this R-rated adults-only scary horror story!

It certainly bolsters my contention that I need a very highly skilled and experienced specialist to perform the surgery, backed by a team of experts that know how to choose the best techniques and deal with likely contingencies swiftly.

Nonetheless, it looked like I needed to see an in-network surgeon first, and obtain an opinion from him. I picked what looked like the best candidate and at 2:45 (while still getting a chemo treatment) I told the PCP rep to set up the appointment. At 3:15, I got a surprise call out of the blue from UC Health, which is out-of-network. Their surgeon had refused to meet with me because of the insurance non-coverage. My paperwork ended-up in front of an Administrative Assistance who sincerely believes he knows how to get the required approvals quickly! So, another new ballgame begins tomorrow! To paraphrase Bengals fans: Who Dey Think Gonna Beat Dem Paper-Pushers? Me! Team Doug!

Treatment Update: I got my 7th radiation treatment today, along my 2nd chemo treatment. I’ve felt good lately; had dinner with close friends two nights in a row; had a good workout yesterday for the first time since treatments began. I’m eating well and taking supplements I think will help. My older brother in Maine may visit soon for a few days. Both brothers are very supportive. Life is good for now.

Here I am pretending to be relaxing on the beach:

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Ready to catch a few rays

Here’s a photo of my “Rad Tech Team” with “Edgey”, my laser machine. Shown left-to-right are Janice, Sarah and Kat. Not shown: Susan, who was not in today:

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Edgey is great at zapping tumors, but is a little rough around the edges!

 

A Bump in the Road

Yesterday morning I realized I had a bad constipation problem. It felt like I had a lacrosse ball stuck in my butt! Fortunately, I look Nurse Jenny’s advice, and got things moving again around noon today. I was also very tired yesterday. It seems I’m starting to lose my appetite as well.

This afternoon, Jen and I spent several hours trying to figure out how to get Humana to pay for an out-of-network surgeon, since there doesn’t seem to be anyone in-network qualified to do the special surgery I require. In the end, someone at Humana assured us that there is a simple process for getting that approved, so we’ve heaved a big sigh of relief (but will believe it when we see it).

My petition to Ivanka has creeped-up to 258 signatures. I sent out a tweet late last week, but it hasn’t had much effect. I’ll try one more, but I’m nearly out of ideas on how to move it along more.

Tomorrow will be radiation treatment #5, followed by a consultation with my radiation oncologist.

Ruminating

My son Brian is a massage therapist in Seattle. For about 10 years now, he’s rented a fairly-affordable room in Ballard from a woman my age. She was diagnosed with wide-spread Stage IV cancer less than a year ago. Brian called yesterday to say that Cheryl passed-away on Friday among family and friends. For her, it was a blessing, since there was no quality left in her life. For Brian and his girlfriend, the long ordeal of living with a terminally-ill housemate is over. However, they face new uncertainty in their lives, since they likely will have a hard time finding acceptable housing they can afford. Live is hard for Millennials.

My daughter Natalie is in St. Thomas in the Virgin Islands on a four-month sabbatical. She’s working three jobs and writing like crazy. Last night, she sang “Angie” as a tribute to Cheryl. You can view an excerpt here: https://www.instagram.com/p/BQ7Dij-AmQG/.

Natalie has lived in Chicago for more than 10 years. She quit her day job three years ago to devote herself to stand-up comedy. She performs almost every night. She formed a well-regarded Patsy Cline cover band about eight years ago. There’s not much money in either of those vocations, but she patches together a meager living with odd jobs. Here’s another video from last weekend; she’s apparently moving beyond Patsy: https://instagram.com/p/BQwozrCA2Sv/.

I had my third radiation treatment on Friday. So far, the worst symptom I’m having is recurring bouts of hiccups. The area where they installed the port is also tender and sore, but getting better. I should start feeling effects of the radiation by next week. I’m told the symptoms will worsen until week four, and then gradually subside.

It appears that there is no surgeon in my HMO Network that is qualified to perform my surgery. I have strong guidance from Dr. Safdi on how to file an “expedited external appeal” to get Humana to agree to pay for an out-of-network surgeon. That process should start next week.

My petition to Ivanka appears to have stalled at close to 250 signatures. I need to figure out how to use Twitter to kick-up more action.

11 Hours at the Hospital Today!

Treatments are beginning in earnest.It took four hours to surgically implant a “port”, an hour for my radiation treatment, and six hours for my first chemo treatment! There were three bags of pre-treatment drugs to make me drowsy, prevent convulsions, and help fight possible infections. Then two bags of chemo: Taxol and Carboplatin. Door-to-door it was 12 hours!

My Petition to Ivanka now has 218 signatures. Please help kick it into high gear!

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Treatment Begins…after Hassles

Yesterday I spent more than two hours on the phone trying to expedite approval of my treatment plan. Most of it was spent on hold with my insurance company, without getting much info other than a case number and word that my case had been sent to Clinical Review after failing to “meet clinical criteria.”

I eventually found out that meant that they preferred the less-expensive type of radiation, instead of the newer type that would protect my heart and liver from permanent damage. That might have taken several days (or longer) to resolve. Acting as my own “patient advocate”, I was able to get approval within 24 hours, thanks to some responsive people at Christ Hospital.

So, I was able to receive my first radiation treatment today at 3:15. Tomorrow I get a chemo “port” installed 5:30-8:30 a.m., a 2nd radiation treatment at 9:30, and my first chemo treatment at 10:30.

Meanwhile, my Petition to Ivanka is up to 196 signatures! Please consider supporting my effort to Save the Planet by spreading the word and/or spending $10 to “promote” the petition to 1,000 more like-minded people (I did again today). Note that so far, half the signatures are from people in Europe! Are Americans afraid to perturb Donald Trump? 

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Waiting…and trying to Save the Planet!

11:45 a.m.: Last night I found out my radiation plan was ready for QA (Quality Assurance), and they were still working on getting pre-certification from my insurance company. So, it looks like it’ll be tomorrow at the earliest before things get moving.

Meantime, I’ve spent most of the morning promoting my petition to Ivanka Trump. I’ve hit-up a bunch of Facebook friends, and pushed the signature total to 100! With a little help from you all, we can make this go VIRAL!

If you’re wondering how you could help me through this difficult time, please consider investing some time spreading the word about my petition. Your children, grandchildren, and great-grandchildren will thank you!

I just changed the petition cover photo from a picture of Ivanka to this:

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Is that better?