Tag Archives: stage IV lung cancer

A fresh concern and it’s a whopper

Sent by a straight female friend ūüôā

A lot of you are friends with me on Facebook so you’ve already seen the splendid offer I received. However, too good not to share with a broader audience.

And….so very many of you have leapt into action and sent letters/faxes/emails to WageWorks on my behalf. Thank you thank you thank you.

All of your comments and suggestions have been welcome/helpful as well. One recent comment made me realize I might be in a bigger pickle than I thought if my coverage is not reinstated. Open enrollment for Affordable Care Act policies is in December. However, the end of Cobra is a qualifying event, meaning I could enroll at any time. Termination from Cobra for nonpayment is a non qualifying event, which might preclude me from getting any sort of coverage (I do not qualify for medicaid or medicare) until the end of the year. If I am misunderstanding this, please apprise me.

My rapidly developing ulcer just increased in size. As well as my determination that there is only one way this can end—so very much is at stake. So please, keep those appeals coming. I shall be sending a fresh one off later today (thanks for the tutorial in how to send a fax for free from home, Miss Kimberly).

Terminal & Terminated

Terminal and Terminated.

I realized yesterday that I have had continuous health coverage from the moment I was born until just now–fifty eight years of buying into the American Dream of health and happiness. And it’s hard to believe that one missed payment was the undoing of this longterm relationship–me and my coverage. And given the fact that they cashed the check,¬†I think we can call this a late payment instead. *However, it is important to note (for the sake of accuracy) that I missed the grace period by a few days, not the due date. The due date was May 31st for June coverage. The grace period ended on June 30.

Yesterday I was most concerned about the bills I am now going to face for care, procedures and prescriptions that were procured under the assumption that I had coverage.

Today I am more worried about what lies ahead. If I am not able to reinstate coverage and/or scramble to be picked up by a new insurer by August 1st, I will have to cancel my CT scan on the 2nd. Ditto for the appointment with Dr. Shaw on the 7th, when I would have labs and also pick up my three month supply of trial drug.

This can’t happen.

I am going to get to work on figuring out where I will get future coverage from but in the meantime, I believe it is essential to have my Cobra coverage, in which I have already met my deductible, reinstated. And I am going to ask your help in doing so.

If each of you could send a letter to WageWorks in which you ask them to reinstate my coverage, I would be much obliged.

Say what you like in your letter but here are the facts. Although the termination notice is somewhat confusing, I missed my June payment. The way Cobra works is you have the month of coverage as your grace period but if you do not make that payment by the end of the month, your coverage is automatically terminated.

In my case, I thought I had paid. Because of my short term memory challenges, I keep a ledger of my bills as I pay them and I had checked off my Cobra payment for June. I pay my bills electronically and there are lots of steps to go through for WageWorks and I must have failed to push submit at the very end.

I got home from Montreal late on the 3rd of July and on the morning of the 4th, went online to pay my July premium, only to discover that I had missed June and was now locked out. I immediately called WageWorks and overnighted my appeal the next morning. On the following Monday I called to make sure they had received it and even though the P.O. showed my letter had been delivered, WageWorks could not locate it. I then faxed my appeal and called yesterday to ask about the status which is when I was told my appeal had been denied and that I had been terminated.

If you have access to a fax they can be reached at:

8335146416  ATTN COBRA APPEALS DEPT

If not, please mail to:

ATTN COBRA APPEALS DEPT, WageWorks INC PO BOX 2998 Alpharetta GA 30023-2998

Reference me as Evalynn Linnea Olson, ACCT #22234499. Let them know that this is a matter of life and death. That if I am forced to stop therapy my lung cancer will jump on this opportunity. And so should they—an opportunity to do the right thing.

xo

Filthy lucre

Screen Shot 2018-07-10 at 11.28.22 AMOk, let’s get real. I don’t expect to get paid $5000 a month to participate in a clinical trial and I deleted that rash comment from my last post. Fantasy, folks, that’s all. However, any sort of financial assistance in the form of compensation would be welcomed. When I met with the head of the cancer center, I also suggested that greater supportive services would go a long way. Free parking and a comped lunch, but also someone to help me navigate the financial morass while I’m on a drug with known cognitive side effects. Visits to a nutritionist, as just like everyone else on my therapy, my cholesterol is through the roof. How about some free massages—to make my life better/more relaxed? And I mean gratis—not billable to insurance.

In other words, there are ways to make the whole clinical trial experience more welcoming and sustainable. These are relatively new concepts as not so very long ago, most clinical trial participants were a one and done—in the most literal sense.

That was the expectation when I enrolled in my first trial ten years ago. That, best case scenario, my life would be extended for a few months. I am incredibly blessed that I have had the opportunity to go on to subsequent treatments and trials, extending my life far beyond what I ever thought possible. I am sensitive to the fact that my grousing about money is potentially ¬†unseemly for those who would give anything to be in my position–alive.

Gratitude is far more palatable and it makes my disease/continuing survival easier for all to digest. However, the problems I face are faced by others as well and as an advocate/activist, I feel it is vitally important to discuss them—in a public forum.

Being alive is a good problem to have. But having to worry all the time about the expense associated with your medical care is not. I now have way more anxiety about my money than my cancer. How crazy is that?

And the thing is, I am not poor. However, with health costs exceeding a third of my income, it’s not doable.

What if (and I don’t feel this is unreasonable) trial sponsors covered all medical costs for participants, just as so many people already assume is true? If that was taken off my plate than I could pay my other bills. My financial situation would still be tight but it would be tenable. And that is all I’m asking for; (I’m talking to the medical establishment now) don’t make this already tough situation–living with a terminal illness–more difficult than it needs to be. Show some appreciation for the very real contribution I and other clinical trial participants make. Without us and our mutations (that’s right, we actually represent a rare commodity, not just an opportunity) these drugs would never make it to market. That would be a real loss, both in terms of lives and dollars.

So let’s keep this conversation going. My experience might be fairly unusual in terms of years spent in trial, personal finances and marital status, but it’s not unique. Clinical trials are the lynch pin when it comes to cancer therapeutics. Things have been done a certain way in large part because few have questioned the status quo. We, as consumers, have greater value than we sometimes realize and it is time we demand a better experience. As a society, let’s stop asking clinical trial participants for more blood, more sweat, more tears and instead find a way to support them as they lead the way. It’s the right thing to do from both a humanitarian and a business perspective—in a word, profitable.

The financial toxicity that is part of staying alive

Cancer is big business. Yep, I said it. What is a devastation for us, as individuals, is an opportunity for others. I have sat in on meetings where that word opportunity was bandied about as if I, an opportunity myself, was not in the same room. Thirteen years in, I am a cancer cash cow. Milked and milked some more. Of course I am grateful to be alive. But I am also exhausted and increasingly depleted.

And I’m angry. Angry that I have now fronted (been in the first few cohorts) of three phase I clinical trials. That because of my (and other’s) contributions, many lives have been extended. And money has been made, lots and lots of money.

Several weeks ago I posted this on Facebook:

A rant and then a rave. I just received a notice from Partners health care threatening to send my account to a collection agency. If they do, this will be the third time. Included in this bill are my copays for the brain MRI’s that I don’t effing need but which are required for the clinical trial. The same brain MRI’s that are responsible for the fact that I now have Gadolinium deposits from the injectable contrast in my brain, a rare phenomena referred to as a brain stain. And if this wasn’t frustrating enough, I also received a notice from Cigna that my echocardiogram will not be covered at all, because it is not medically necessary. Again, mandated by the trial. But, in this case, clinically required as there is the potential for cardiology complications from the experimental therapy.¬†

And while sitting in a restaurant at the airport on the way home from the HOPE summit I watched numerous people come up to the soldiers at the table next to me to thank them for their service to our country.

I too am a soldier in an entirely different sort of war. I don’t get to board the airplane first—I can’t even get my parking paid for at the hospital. Instead I am a cog in the wheel–a cog that pays for the very service it provides. In more ways than one (brain stain). Wrap your head around that one.

#MoreRights&SupportiveServicesForClincialTrialParticipants

The exceedingly large number of comments on this post told me it had touched a nerve. The next day I forwarded it to the head of the Yawkey Cancer Center, requesting a meeting to discuss the financial toxicity associated with clinical trial participation. The director responded immediately, and invited representatives from the financial and clinical research departments to join us.

I brought along a sheet with my out of pocket expenses for the previous year, as well as my monthly budget. I addressed the misperception that clinical trial participants get all costs covered. Drug is free, some procedures and labs, everything else is billed to insurance. And clinical trials require more frequent visits and scanning, adding to overhead. Premiums and coverage are variable, but one can safely assume that a clinical trial participant will max out their deductible quickly. And that other out of pocket costs (parking, travel, meals, hotel) will almost assuredly not be covered at all.

I also shared my frustration at seeing notices seeking healthy volunteers for clinical trials at MGH. These volunteers are invariably offered compensation, whereas people with cancer are not compensated for their participation in trials. The long standing rationale is that to do so would be inducement. Which, of course, is total bullshit. The only thing inducing those of us with terminal cancer is our imminent demise. And any suggestion that the FDA mandates that cancer patients not be compensated for clinical trial participation is false.

The real truth is this. Healthy volunteers are offered compensation because no one would volunteer otherwise. And ‘volunteers’ in clinical trials for cancer are not offered compensation because (you choose) A. we are desperate and will do anything, B. it’s always been done this way C.¬†why pay for what you can get for free.

However, it doesn’t have to be this way. Nope. At the tail end of the second decade in the 21st century, it’s high time we adopt a new paradigm. One in which clinical trial participants are paid for their important contribution to medical research. Not only is it the right thing to do from a compassionate and ethical perspective, if the financial barriers to clinical trial participation are mitigated/removed, ‘volunteers’ (fucking hate that word) would no longer represent such an elite portion of the patient population, resulting in both greater equity and better science. And greater accrual, a continual challenge when enrolling patients into trials.

If I were to be compensated or heck, even paid a salary for my participation, than I might just be able to make ends meet. Imagine if I’d received a stipend for each of the 100 months I have now spent in clinical trials for drugs that command well upwards of $10,000 a month once they’ve gotten FDA approval. I might be able to pay my bills and also to live more comfortably. As it is (and yes, I will keep bringing this up until the day it actually happens), not even my parking is comped.

Taken from a current listing for clinical trials at MGH using healthy volunteers. Note the parking compensation.

Words matter and this one’s gotta go

Screen Shot 2018-06-04 at 5.38.14 PM

Yesterday was National Cancer Survivors Day, and I just went meh. Wait–make that hell no.

I don’t ‘do’ Survivors Day. My lack of enthusiasm is manifold. First of all, cancer is not a damned day. For many of us, there is no life ‘after’ cancer. Nope. As I’ve said before; been there, doing it. This is present tense.

And then there is the word survivor. I¬†loathe¬†it. Survivor is too much, too little, too late. If you haven’t stopped to read the definition of survivor lately, let me refresh your memory:

Screen Shot 2018-06-04 at 5.58.20 PM

Yuck. Who wants to be the ‘person remaining alive after an event in which others have died.’ Or the ‘remainder’. I suppose someone who ‘copes well’ is a good thing but then again, a rather serious understatement when you are talking about cancer.

The word ‘survivor’ is inadequate. It is also implicitly negative/ugly. No one wants to be ‘the sole survivor of a massacre’–we want everyone to survive. Ever wonder where survivor guilt comes from? Look no further.

In the past I have referred to myself as ‘surviving cancer’. The verb vs noun thing seemed to better capture the fact that I am now and likely always will be in treatment.

However, after thirteen years of surviving, I’m sick of this shit.

From now on, I reject both verb and noun in favor of a far more positive/forward thinking term. I am living with lung cancer.

And you know what? There is no guilt associated with being alive. If you’re not already there, join me.

xo

 

For all you tough mothers out there

Check out that slogan ūüôā

Happy Day; this one’s ours.

Like all holidays, it feels a bit bittersweet. A reminder of good times but also bad.

Four years ago I took my first dose of lorlatinib (image from that momentous occasion shown above). Several days later I started coughing up specks of blood. By the morning of day six, my hemoptysis was significant enough that Dr. Shaw asked me to come to MGH for an emergency CT scan just to rule out a pulmonary embolism.

As I was getting ready to go to the hospital, a call came in from Utah, where my mother and stepfather lived. It wasn’t yet daybreak there so I knew something must be wrong. My stepfather was on the other end of the line and he began to cry as he told me that my mother, Evalynn, had passed away in the night.

Mom, gone.

I fought back tears and panic both as I drove the hour into Boston. My daughter met me at the hospital and when the tech emerged post scan I jokingly asked ‘so is my cancer all gone?’ No, but almost. And the blood? Likely a result of rapid tumor necrosis.

And then my heart broke because the person I wanted to call first was no longer here.

However, grief was side by side with joy: I was going to have more time to spend with my three children; Jemesii, August and Peter. Being a mom is the one thing that keeps me going no matter what—my raison d’√™tre.

In three weeks one of my (now adult) children will be moving back in with me. The reality is, he still needs his mother. And I am absolutely thrilled that I have the privilege of being here. For him. For me. For life.

THIRTEEN BOFFO YEARS AND COUNTING

Damn. I’ve been so busy living (!) that the thirteenth anniversary since my diagnosis with lung cancer–on 4/5/05–just whizzed right on by.

Totally unnoticed.

Screen Shot 2018-04-13 at 9.36.16 AM

Lucky Thirteen

And really, that’s how it should be. It’s the journey that counts, right? And I am enjoying one hell of a scenic ride. Art, advocacy, a little bit of loving (more on that later–wink, wink). Up to my neck in the wonderful details of this one and only life that I call mine.

Which is not to say I’m taking anything for granted. No, far from it. I still begin my days with ‘I’m alive, I’m alive, I’m alive.’ And now I am apt to add in “I’m in love, I’m in love, I’m in love.’

I think it is no coincidence that live and love are separated by only one letter. In fact, i directly precedes o both in the list of vowels and on my key board. I am wont to sign my personal missives ‘love, Linnea’ but quite often I hit the wrong key and instead type ‘live, Linnea’.

I am also delighted by the fact that my personal goddess/oncologist Dr. Shaw is named Alice. C directly precedes v on the keyboard and once again, It is not uncommon for me to type Alive rather than Alice.

It’s all so nice. As is being both alive and in love (with life) thirteen years post diagnosis–at least a decade longer than I or my oncologist once thought possible.

Thank you innovative medical research. And keep up the good work. I’ve got plans; big plans.

live, love, Linnea