Hold The Mayo*

I will NOT be getting treatment through the Mayo clinic.

I THOUGHT I’d been cleared by my health insurance for treatment down here, I thought we had done all the work involved in getting approved for the CODOX=M/IVAC chemo treatment that I need to treat my Double Hit Lymphoma, but apparently we hadn’t.

Where the mix-up occurred is still unclear, Gerry (my insurance wrangler during my illness) was certain that we had pre authorization, but apparently we didn’t.  At any rate, it’s a hell of a way to run a health care system, and it stinks.  I could go on at length about how there shouldn’t even BE insurance companies, but my feelings on this are well known, and I’ve never envied my Canadian friends more than I do right at this moment.

Cancer Growing
The Mayo doctor showed me on Tuesday that the cancer is in my bone marrow, which is a new development. I knew that it was in my nervous system (another shock from last week), which is why the CODOX=M/IVAC cocktail was supposed to be so perfect for my cancer.

Since the pre-auth didn’t come through, I’ll be getting the R-EPOCH chemo that was already started up at Health East, but which may not be as strong as required.

Stem Cell Transplant Ahead?
And that might mean a stem cell transplant down the road after the R-EPOCH chemo for the Lymphoma is finished.  According to both oncologists I’ve spoken to, a stem cell transplant is NOT uncommon for this type of lymphoma, but it doesn’t seem to be as necessary after the CODOX=M/IVAC as it usually is after the R-EPOCH.

I’m stunned. I feel like an idiot

How did I not KNOW that I wasn’t covered — I thought all of that was cleared up when the Mayo billing system listed all of the pre-testing was totally covered by our insurance on the billing page of the online Mayo patient portal.

Even more terrible, I don’t know what to do about the GoFundMe that I did to raise money to cover our hotel down here in Rochester.  If I don’t get treatment here, I will feel as though that was money that was given—and received—in error.  I will need to give it back.

I’ve contacted everyone who donated and I have offered to return their donation.  I’m happy to do so.

The truth is, we have a TON of copays due each week (some weeks the copays run upwards of $1,000, some weeks they’re as low as $150, but every week brings more and more copays…)

I could use the GoFundMe money for the copays, but that is NOT the stated reason for the fundraiser, and I want NO ONE to feel that they have given under false pretenses.  I think I can return the money via paypal, I’m not certain if I can actually refund the money via GoFundMe, but if I can that would be easier.

Moving Forward
So tomorrow it’s back to Health East for a spinal tap.  I’ll be receiving chemo directly into my spine each week to try to prevent the growth of the cancer in my nervous system.

I feel so overwhelmed, so exhausted, so disappointed.  This two weeks of leading up to a Mayo treatment, then the day of uncertainty, THEN the disappointment of this morning.  It’s really almost more than I can bear right now.  I just need a bit of time to reorganize my thoughts, to get my self calm again, and to get back into cancer recover mode.

And I will get there.


*Yes, I had to make the cheesy joke, blame the cancer.

22 thoughts on “Hold The Mayo*

  1. Dear Annie,
    I am so sorry about the insurance company. I made a modest gift to you via one of your fundraising accounts. I consider it your money to fight the devil of cancer. Use it however you need or want to. I do NOT want it back. Love, Joan

  2. That is all a bunch of crap! You need that chemo, and the insurance company needs to pay. I hate that this is all hitting like a stinking freight train. I wish we had single payer and you could get the treatment you need and not have to deal with all this.

  3. Annie – I am so, so, sorry. I am willing to bet that many, many of the wonderful people who have donated are fully in support of you and of whatever medical and related bills you use that money for. You need to give yourself – you body and your mind – a rest at this time regarding the funds contributed to assist with your healthcare.
    The more important questions at this time – what can be done to be done to get the authorization for treatment at Mayo, who needs to do it, and what can we – your supporters — do to make this happen.
    I wish I was an expert in negotiating the health care insurance business, but I am not. I’m hoping someone who reads your blog has the expertise necessary, or knows someone who has that expertise. Hoping someone will speak up.
    Annie – please give your mind, and your body, the rest it needs.
    Sending loving thoughts your way,

  4. When I first went through treatment for cancer 23 years ago, I attended support group meetings at The Wellness Center in Walnut Creek, CA. My group facilitator was one of the first in the nation to receive stem cell transplant for lymphoma. I don’t know the specifics of her case, but she was at least 10 years out at that time, so it was attached least 30 years ago. I don’t live in the SF Bay area anymore, so I have no idea what her status is now. I at least hope this story gives you hope.

  5. Please keep the funds that I sent – and, as Myrna stated above, if you have a name/ph.no. we can contact at your insurance company – or at Minnesota’s regulating body – let us know & they will hear from many of us in your behalf to get this approval done!! This is beyond ridiculous……………. Please feel our love and great regard for you. This fight should not be yours at this time.

  6. Annie,
    If you don’t have the GoFundMe you do have another site right? I intend to donate with my next payday and I don’t care care WHERE the money goes. It’s all helping and that’s the point.
    I haven’t commented yet during this because I truly haven’t known what to say. (Today, reading this, it’s mostly expletives coming out of my mouth. Insurance sh*t sucks.) But know that there are plenty of us silent folks out here holding hope for you in your battle.

  7. Oh Poop! I am so sorry this is happening to you. I’m not much help with Health Care situations, I just know it sucks.! Praying for the best outcome.

  8. Annie, this no time for moral conundrums. I don’t think you need to return the money you honestly thought you needed. I know how copays an mount up. They are the additional pain through a serious illness. I see them every time I go to the lab and then more when the tests aren’t covered. I live on 20 minutes away, well, 25 with road construction, if I can help you in any way, send me a private email. We have to support one another through all of the shit. It’s the only. Holding good intentions for a good recovery.

  9. If I get an email, I will reply as I do here. Please keep my small donation for whatever you and your family need. I hate our health care system. It is so unfair and so wrong for people to not be able to get the treatment that is best for them. As a cancer survivor who had excellent coverage at the time of diagnosis, I live in fear of recurrence because what I have now is terrible, as well as barely affordable. I hope you will find out that your insurance will relent and cover you for the treatment you need, going forward, Please let this be a small bump, and not an insurmountable mountain!

  10. Hello Annie. The setback sucks! But I really appreciate you letting us know how fracking unreasonable the insurance companies can be, and now I know to bring up the question of “pre-approval” if we need any type of treatment, to get the pre-approval in writing. Agreed, now it is time to re-focus all attention to Goal #1. Please keep my GoFundMe contribution and use it as you see fit. Blessings.

  11. I’m horrified at this. I will not accept a refund on my donation, and I will go find a universal health care candidate to donate some other dollars to.
    Much love to you all.

  12. Annie, I am sorry about the insurance mess, BUT since you said the treatment recommended by the Mayo could only be gotten at the Mayo is it a trial? If it is, you might be able to get it because it’s a trial. Also, they changed your diagnosis to say your bone marrow is involved. Will the insurance company let you get it at the Mayo because of your diagnosis change. (Can you tell I’ve been through this stuff?). Best of luck either way.

  13. APPEAL the insurance company (first) decision. They do these denials then wait for the appeal. If you/we know a MN attorney whom ins co may fear, get her/him to write the appeal letter. It is the despicable underside of CancerLand.

    Any local reporters you/we know? See if they can help get your story out there, e.g., family with second blood cancer, the power of Knitters, etc. Etc.

    And, please keep my donation—it was given to help you financially (and emotionally) in these trying times. You still need it! I gave it in honor of my husband who did not survive Multiple Myeloma——i want to kick every #&@$% case of cancer remission!

    • I understand that folks want me to appeal, and if I wasn’t so overwhelmed with the speed with which this cancer is moving, I probably would. But right now my MAIN focus has GOT to be on the cancer, not on an appeal. To be honest, the GoFundMe took SO much energy, I just do not have any more non-cancer-fighting energy at my disposal.

      And, because I know this is the next step, I don’t really have the energy to work with anyone on this, either. Just let me get through this next phase where I can get on a strong Chemo and start fighting the nervous system/bone marrow Metastasis.

  14. This sux mightily! I’m beginning to think most folks involved in managing access to healthcare (NOT actual practitioners) are worthy of a special place in hell.

    I’m locked out of email at the moment, being on leave, so sorry to respond the your message that I can’t receive here, rather than privately.

    Since I can’t access your message or respond to it privately I’ll let you know here that I don’t want that money back. Use it as you see fit. Keep fighting!

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