And now the rub

I live on the edge. As I have a terminal illness, it is to be expected. Had I an intact family unit into which to retreat, that edge might blur. Living alone, it remains in sharp focus. Fortunately, my disease is currently stable. However, my finances are not.

Because of the cognitive side effects I experienced initially with lorlatinib, I found it difficult to organize my life in any material sense. I couldn’t seem to think in a linear way anymore, it was hard to reason, and my loss of memory was so profound that it felt as if it had been wiped.

It was a lot to handle on my own and worse still as I was also going through an incredibly acrimonious divorce. Before I began receiving alimony, my children started a go-fund so that I could pay my bills. The attorney fees soon became outrageous, and when I received a statement for $10,000, I lay down on the couch and wept. I had no idea what to do, and wondered if killing myself might not be the best solution (another potential side effect of lorlatinib is emotional lability and reduced inhibition).

However, I have the most amazing friends and two of them stepped in and simply paid my attorney fees. And when the dust settled they refused to let me pay them back.

Once I began receiving alimony plus child support, I was able to make ends meet. Child support ended after our son graduated from boarding school, and for the last two years I have been operating at a net loss every single month.

Now that I have a much better handle on the cognitive side effects, (aside from memory loss–which remains a great challenge) I am better able to organize. And to think about the future–in itself, a luxury; the very notion of future.

In the bigger picture, my alimony will run out at the end of next year, as I was granted only five years (from my perspective, don’t ever get divorced in NH). I do not qualify for disability because of the number of years that had elapsed between my last paycheck and my terminal diagnosis. I was awarded half of our retirement fund in the proceedings and once I am able to take social security, I will receive it at 1/2 the amount my ex-husband will get.

I am not without resources but there is at least a five year gap if I don’t want to burn through a somewhat modest retirement savings (of course, all of this is presuming I am going to live, something that is now conceivable). And that is why I am hard at work on writing a book—and also envisioning it as a best-seller (not going down without a fight).

In the meantime, my health insurance through Cobra runs out next month. I have been working with the financial department at my hospital to figure out what plan from the Affordable Care Act will work for me. It’s tricky, because clinical trials are procedure rich, ie; more copays. And, because I must seek coverage with a new provider before the end of the year (I should have anticipated this) I must now meet a new deductible.

It is all very worrisome stuff. Cue the cognitive side effects. With Cobra you must pay your premium within a specific grace period or you lose your coverage; period. A year and a half ago I missed a payment and had to appeal—I was given a second chance but also told it would be the only one. Four days ago I realized that I had again, despite my careful bookkeeping, missed another premium. All I can think is that I forgot to push submit.

When I called WageWorks, the man on the other end of the line was elderly and obviously very kind. I was unable to stop myself from weeping as I told him this was my worst nightmare–that I should lose my health insurance. And that if it happened, I would be financially devastated (my scans last month would not be retroactively covered). He was so very sympathetic but unable to help so I have once again submitted an appeal that goes something like this: please please please don’t take away my coverage because I missed the grace period by three days.

I will know what they decide shortly. The stress/anxiety is just about undoing me. And I share this with you so that you understand that I am a spin artist—you ask me how I’m doing and the pat answer is great. I am great, life is good, but there is a hell of a lot more on my plate than I sometimes acknowledge and not all of it easy to swallow.

18 responses to “And now the rub

  1. I thought that stage IV lung cancer made you automatically medi-care eligible. Regardless of age. Also should make you social security eligible I may be wrong about this but surely there is someone in your large group of friends who can help figure this out. I hate that you have this terrible stress. It’s so wrong. Hurry up and write your book so at least we can all buy it and get our friends to also.

    Sent from my iPhone

    >

    • Thanks Gale. I would automatically get disability (dating back to 2008) except for the fact that the last time I pulled a paycheck was in 1995—two years before my youngest was born. However, I was part of an income producing family for all those years up until my divorce—we filed taxes together, why the hell is my contribution not taken seriously. It really peeves me. And yes, I’m on the book!

      Linnea

  2. Please come down if you need to vent, cry, or just breathe.

  3. Yes, I thought lung cancer stage 4 is a compassionate dx with quick approval for disability and early Medicare after a year. That is what I was able to do. However, supplement and part B still run me around 500 a month. So which really was about the same as my private insurance. But I chose Medicare since it covers some nursing home costs.

    I’m sorry to hear you are having this trouble. Healthcare is my issue. Why don’t we have healthcare coverage for all. So sad

    • Jayne, it would be except for a loophole–the time elapsed since I last worked. They do not take into consideration the number of years I worked—certainly more than some of the younger people who are able to get disability. And I’m sorry that you too are worried about healthcare.

      xo Linnea

  4. Just not right for patients involved in drug trials to have to pay! Along with so many other things that are so not ok about our country’s heath care system

  5. Linnea,
    Thank you for sharing this information with us. We need to know all that is going on. Each of us have struggles on this journey. Somehow, what you have shared will help someone else in some way.
    Please lets know if you start a new GoFundMe page. I would. like to give what I can.
    Hang in there, you have many of us thinking and praying for you.

    Shelly Allen

    • Shelly—you’re the best. I think I’ll get through this but man, it would be nice not to have all the anxiety.

      xo Linnea

  6. It is courageous of you to share the full picture and I’m so glad you did, Linnea. You help us all see the full reality, both good and bad. I am eager to read your book and will promote it to others. Take good care.

  7. Linnea,
    I have not experienced even a fraction of what you have, but deeply relate to your post about the inhumanity of the health care system. I, too, have wept on the phone with health insurance reps – some compassionate, others cold, none able to waver from the rules. I wonder how many levels up you have to go to find anyone able to influence change.
    I, too, blamed myself for missing the submission date by days – not because of chemo brain, but widow brain. The crazy thing is the responsibility we feel for not complying with a system that is not only inhumane, but cruel.
    At least once a week at work, I’m on the phone with someone going through a similar situation – just last week, with a man in tears because his workplace of almost 20 years wouldn’t cover time off for treatment.
    I try to hold hope that the voices of compassion will be heard and that we’ll see progress toward good healthcare for all.
    Thank you for sharing your experiences in all their pain, beauty and complexity, Linnea. You are a voice for many, and we are grateful.

    • Judy, it breaks my heart that widows/widowers must also put up with this. Where is the compassion/understanding? Care for our fellow man? Etc…etc… I am going to keep speaking up until I really feel heard. It hasn’t happened yet.

      xo Linnea

  8. L- I absolutely can’t get my head around your disability status. It is insane. Is there a pro bono law community to tap into, that could appeal this status? That is the worst kind of Kafkaesque bureaucratic bullshit. That said- I will buy ten copies of your book and tout it shamelessly. You probably won’t need the publicity. I predict good things. Hang on. And we’re all here for you, many hands making light work.

    • Joan, I am going to search out a pro bono attorney who might work with me on this. It might come down to actual policy change but that’s ok—it needs to happen. I read that it someone is receiving disability and they die, then their widow/widower can collect their disability in some cases. WTH—I am the one with terminal cancer, and I can’t get it. And I’m writing my ass off and counting on all of you to read it!

      xo Linnea

  9. It grieves me so much that you have to go through this, Linnea. I hope your book is a wild runaway bestseller! In the meantime….. yes, your friends are here for you. You’ve made it through hell and high water already, and you will keep going, I know, but how unfair that you aren’t being bundled up in a soft cocoon and cared for 100% as you should be. Love from me and heat-waved England (where the NHS is growing canyon sized cracks, too, so don’t imagine it’s all rosy over here… alas, we are all of us facing the same inhumane, late capitalist bureaucracies, and increasingly we too are abandoning people in desperate need.)

    • Thank you Liz. Fortunately I am tough but that doesn’t mean I don’t fantasize about things being a little bit easier. And yes, capitalism is at the root of much that is wrong in the world.

      xo Linnea

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