LONGLEAF STORIES

full circle in the hundred acre wood

I’ve got good news and bad news. How about I give you the bad news first? Yesterday. Now, that was a doozie of a bad news day. Feel free to skip to the bottom of the page for today. Today was a good news day. Big time.

I spent two hours on the phone with a very nice person, Cindy, with the American Cancer Society. She told me that Florida is one of the worst states in the union to live in if you are uninsured. She reminded me, not that I needed reminding, how hard Florida has been hit by the deep recession, and how many new applicants there are for health care and other services. She told me about Cover Florida, an initiative passed by the Florida legislature last year to attempt to provide health insurance coverage for uninsured folks between the ages of 19 and 64. She advised me to read the small print carefully. Steve has been uninsured for more than ten years, so his recent cancer diagnosis is not covered by any sort of prior condition forgiveness, which makes the Cover Florida program “remarkably unhelpful,” to use a favorite press conference phrase of former Secretary of Defense Donald Rumsfeld.

Cindy could not know that with each sentence, her gentle voice was pounding, pounding, pounding me, until I was no longer at my desk, but under it. She advised that even if Steve is approved for Social Security Disability, the Medicare component of it will not begin for an additional two years. Meanwhile, if he is approved for Medicaid health care coverage, that will stop if he begins to draw Social Security Disability because he will be receiving too much money and no longer be eligible.

This conversation came at the tail end of a difficult day, which had started with a woman advising me that the appointment Steve thought he had next week with one of the best urological oncologists in the country was only penciled-in, and tentative, and had, in fact, been canceled. Steve was fully aware that this was only a discounted-fee, cash upfront second opinion and review of his records only, with no “procedures,” designed to give him some clue about what sort of treatment he should seek. I won’t go into the whole sorry mess here, except to say having to call Steve and tell him there was no longer an appointment was the toughest call I’ve ever made.
 

 Childhood0002
The distance between five and fifty-five is not so far as we might think. I am sure our mother thought this out-take of little Steve’s official kinder garden photo was cute. It is. But it is also the one that got pasted into the old green photo album with the black pages. It made Steve look hapless, and helpless somehow there with his shoes sticking out and a dungarees cuff showing. He’s growing everyday now, in that lovely way of blooming adults; a beautiful picture, a disease defying picture.

_______________________________

Steve learned that his “perfect” big sister is capable of swearing a blue streak. We cursed together, and then went back to work. Mary Lou called. She is a terrific woman in New York with the Bladder Cancer Advocacy Network clinical trials matching program. We had talked mid-December, shortly after Steve had gotten the pathology results. She was just making a follow-up call to see how he is getting along and if we had any more information for her to feed into her computer to see if the specs of his cancer matched up with any studies looking for subjects.

I shared my tale of woe about the canceled appointment with Mary Lou. She suggested I call the organization’s patient advocate. “They all have one,” she said. “And here’s a number for the Patient Advocate Foundation. Call them, too.” 

I called the patient advocate for the organization that had canceled Steve’s appointment.  She is a soft-spoken good listener, well-suited to her job.  She said she would speak to the new patient folks and also to the doctor, that she couldn’t make any promises that they would reinstate and honor the appointment, but she would pursue it and get back to me.

The afternoon was wearing on by then, but I made one more call to a different hospital’s oncology line. I left a detailed message, made a cup of tea, and sat back down for the call to the American Cancer Society (an impressive group, by the way). “We’re here 24/7, and if there is any sentence that has the word ‘cancer’ in it, then we might be able to help.” They might be able to help, for example, with a little gas money to get a person to their treatments,  or help with a repair to a patient’s home, or with transportation to chemo. All sorts of things. I liked these people. No BS. Straightforward and forthcoming.

I stood at the fireplace last night and talked to Buck. My misery quotient was high. I went to bed last night deeply worried that no one would treat Steve’s cancer; that he would fall through the cracks right before my eyes.

This morning, I resolved to attack the problem from a different angle: to pursue teaching hospitals, even Hill-Burton Act facilities around the country if that didn’t work.

The phone rang mid-morning. It was the patient advocate. Steve’s appointment was reinstated. I whooped, hollered and did a dance of joy as though his cancer had been cured.

A little later, I was astonished when a woman whose delightful title is RN-Patient Navigator (Beam Me Up) called me from the fine regional hospital whose oncology line I had called and left a recorded message on yesterday.  They will take Steve’s case and provide treatment. They have no problem following treatment guidelines from the eminent oncologist Steve will see next week for the second opinion/review of records. 

They will take Steve’s case.

 

 

 

0 thoughts on “Good News and Bad News

  1. You and Steve are navigating every patient’s nightmare. Congratulations on finding help. Steve is fortunate to have you.
    Before we left Florida, I was on the board of the county American Cancer Society for 7 years. Great organization with information and help for patients and families, and a strong funding program for research into cancer. Glad you found them and are getting help.

    Like

  2. Elizabeth A says:

    O.K. I admit to NOT scrolling down first but reading the entire thing, my heart beating faster and faster and the curse words whispered at the screen. I was fully prepared to write all manner of curses and imprecations — partly in solidarity and partly because what else can one do?
    Evidently, wait!
    I am so happy for you and for your brother. You’re terrific. I hope you had a big drink tonight. Seriously.

    Like

  3. Gullible says:

    Dances of joy are oh-so-much-finer than cussing up a blue streak. My thoughts are with you and Steve and his road ahead.

    Like

  4. Gullible says:

    By the way, you realize you’re blazing a wide path and drawing a map that others could follow, don’t you?

    Like

  5. Paula says:

    Very good news! You’re a good sister. By the way, I have a very dear friend with bladder cancer. I say has instead of had, because she goes to Memorial Sloan-Kettering in NYC every three months, where they treat her cancer as a chronic condition. She’s had it about five years, I believe. Just want you to know there are a lot of possibilities out there, some quite positive. I’ll be thinking of you both.

    Like

  6. Sid says:

    Angels come in all shapes and sizes. I think I’ve seen a few in this posting! Thank-you!

    Like

  7. deanna says:

    What a roller coaster. I know Steve’s glad he has you. That’s special stuff in a tough process. Take care on the rest of the ride.

    Like

  8. Okay, I’m relieved that there was good news.
    Your brother is incredibly blessed to have you.
    And I agree, by detailing the process a bit , you can help empower others.
    I’m giving you a big cyber hug.
    And keeping Steve in my prayers.

    Like

  9. May you be having a gentle weekend where you take moments to just breath deeply cuddle up to Buck and Maggie and take care ofyou too:0)
    So glad to read of the good news. May you both find the next steps on this path to be less rocky and undulating let there be a few miles of smooth paving eh.
    I love the idea of a swearing Angel would be welcome in my world anytime especially if theywere to broaden my own lexicon:0)

    Like

  10. Guen says:

    We all know Steve is blessed to have such an amazing sister! I will keep him in my prayers.

    Like

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