Tag Archives: terminal lung cancer

Where do I go from here

It’s an interesting question contingent upon several prepositions.

See, I have a problem and the fact that it is a good problem (all things considered), makes it no less daunting. It would appear that I am going to live. Appear being the supposition here, as one can never be too sure. However, if the current trend continues, well, than I have at least a rather immediate future.

This is not something I planned on.

Nope. Stability is a concept I am only beginning to embrace. However, keep in mind, it remains a contingent, suppositional stability. Which is about the same degree of stability that one would experience sleeping in a tree.

Here are the basic facts. I am fifty-eight, almost fifty-nine years old. I am currently in fabulous physical shape but remain in treatment for advanced–aka terminal–lung cancer. That treatment has proved remarkably effective and although my cancer is not gone (70% response) it is gone enough. Better yet, I’ve had a sustained response to my current therapy–four years, three months and counting. The rub? At the moment, this is the end of the road for me–treatment-wise. When (do I dare say if?) this one fails, there is no other. Been there, done that as each time I’ve started a new treatment it has been with the understanding that there were not yet any others. Medical science has thus far managed to keep apace with my cancer but I’d be lying if I said it didn’t weigh on me–life with limited options.

So, there’s that. Cancer. And then there are the side effects of treatment. In my own case, the most debilitating have been the cognitive issues. When it comes to short term memory, I’ve got shit for brains. My own children were skeptical of the severity of my issue. That is, until my son August tried to teach me something. It took his repeating directions countless times and finally writing it down as well before I caught on. This concerned him enough he shared his experience with his younger brother and now I think they both have a little better understanding of what I face.

And although I am not nearly as anxious as I once was (perhaps an inadvertent blessing that goes with loss of short term memory), I am incredibly worried about finances.

I may be one of the few people with terminal lung cancer who does not qualify for disability. This is due to the number of years that had elapsed (stay at home mom) between my last paycheck and diagnosis. Alimony is my income; in an amount insufficient to actually get by and so each month my credit card bill steadily grows. And those checks stop arriving fifteen months and three weeks from yesterday.

I have started reading the classifieds looking for gainful employment. Unfortunately, my own work history is heavy on waitressing, with some other odd jobs mixed in. And although my work in advocacy should qualify me for something better, I am terrified that my short term memory issues are going to make any job difficult to maintain.

Take a deep breath. These are good problems to have.

I

can

do

this.

The lung cancer blues

I was a miserable child. As in, I was miserable; a good deal of the time.

As a ward of my parents, I felt a good many things to be out of my control. However, with careful observation it became clear to me that I was in charge of my personal happiness. And I set about making certain that my own disposition became–through much effort–a sunny one.

This has served me well. Certainly, it has made me more likable but it has also impacted my outlook on everything.

Even cancer. Yep, when I was first diagnosed I look at my odds (not very good) and decided that it was going to be hard, but that I could do this. As in, I had the skill set (that sunny disposition being part of it) to give this a go.

And so I have. But of course, I never could have guessed that I’d be at this surviving thing for such an extended period.

It’s a blessing. And a curse.

There was a sweet little op ed in the NYT’s today about the good in taking things for granted. Sadly, that is a luxury well beyond my reach; an innocence lost long ago.

No, my life is fraught; every frigging moment. Not by choice, but rather circumstance.

Thirteen, going on fourteen years of living with a disease such as lung cancer. For the bulk of that time, well over a decade, I have also lived with the knowledge that my cancer was terminal.

My cancer has remained stable for an extended period. Somnolent, resting, biding its time. I feel good/strong. Sometimes I even pretend that I can let down my guard–just assume I’ll be sticking around. Those are the good days.

But then it hits me. All of it. Like a ton of bricks or a platinum doublet. I am alive but alone with an uncertain future on every front. Grateful and terrified all at the same time. Sad and sometimes angry too. Anxious about my friends because even if cancer’s not breathing down my neck, it’s breathing down theirs.

I was right; this is hard. Really hard.

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

Read this.

This blog by my friend Arash Golbon may be the most true and important thing you’ve read yet regarding lung cancer. Arash gets right to the heart of what losing your beloved wife and the mother of your two young daughters is really like. In a word, devastating.

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Molly died last month…… I still have a hard time saying it, but the person who I spent my last 25 years with died last month. This means no more birthdays, no more Thanksgivings, No more Christmases…..means no more anything. I watched a part of me die that night; a part I will never get back.

Molly’s health declined rapidly four months before she passed. I left work and devoted my life to taking care of her. I was fortunate enough to have a very close friend name Elle who works for Mission Hospice. Elle arranged the best palliative care group possible for Molly. She arranged for doctors, nurses, caregivers, physical therapist, etc. My parents even moved in with us to help. Molly had the best care anybody can ask for.

But ultimately I took care of Molly. She was my responsibilty. Hollywood has made a terrible job portraying what a good marriage is. Marriage is not about romance and candlelight dinners, it’s about two people committing to take care of each other. That’s true love. I had a great marriage.

I loved taking care of Molly. It was very hard work as she was weak and could not walk far. The cancer in her lungs was so advanced that she would have painful shortness of breath throughout the night. It would sometimes take me half an hour to get her breathing comfortably just to have the entire process start again an hour later. Toward the end when Molly was so weak that she couldn’t talk, I knew what she needed just by looking in her eyes. Molly’s blue eyes had become even more radiant due to her sudden weight loss. Her eyes told so much.

During those last months, Molly and I talked about of a lot of things. Twenty five years is a long time to be with the same person. We had definitely made our share of mistakes, but those seem so unimportant compared to how much we had done right.  We talked about the love we had for each other, and all the adventures we had had.  Elle said I was the only person who could console Molly.  I loved when she smiled, I loved the sound of her breathing when she slept, her comfort brought me so much pleasure and peace. There are nights now when I look over to the empty side of the bed and imagine her still lying there sleeping and breathing. I miss her smile, I miss the sound of her breathing.

When Molly died on those early hours of morning, I sat with her alone despite repeated pleas from my aunt. I was her husband and I was going to be there until the end. I kissed her head and lips, and said good bye. I promised her that I would take care of her daughters and raise them to be kind, compassionate humans. I sat there and looked at her until they took her away. Then I felt the pain.  It was the sharpest pain I have ever experienced in my life. Part of me died there with her. A major chapter of my life was over.

The days immediately before and after Molly’s death brought an unprecedented showing of human kindness. Our story had touched so many people. Support in every form poured from friends, from family,  from complete strangers on the street who had heard about us. Some of the kindest notes we received were from children. For most of these children, this was the first time dealing with death. I applaud the parents who not only did not keep their children away, but actually invited mine into their homes. I wish CNN would have this as part of their news flash.

It’s just the three of us now. We miss her a lot, but we are trying to go on. We are lucky to have so many people who care about us. We are lucky to be living where we live. We are lucky to have loving family. Every day has it’s joys and tears. We know many more sad days are ahead of us, but we also know Molly would want us to be happy eventually.

 

You can read more of Arash’s posts at livingwiththreegirls.com

Frosted

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Yesterday I had two slices of chocolate cake for lunch. And yet another for dinner. This is so not my usual behavior, but then again, desperate times call for desperate measures.

Sigh. Desperate is surely an exaggeration but then again, this is undoubtedly an interesting moment in history.

2017 started off with a bang when I tried to pay my health insurance premium for January. To great consternation, I found myself locked out of my own online account. Never, ever, a good sign.

It was a holiday weekend so I had to wait until January 3rd to speak with a representative at BeneDirect, the company that manages my health insurance through COBRA. The pleasant young woman on the other end of the line confirmed that due to non payment in December my policy had been terminated.

Isn’t that an awful word–terminated? Right up there with terminal. No good has ever come of either one of them. Were I Queen they’d both have their heads lopped off.

Speaking of heads, what’s inside mine is nowhere near as sharp as it once was. I’d never knowingly miss a COBRA payment, understanding only too well how much is at stake. I am undoubtedly any health insurance company’s worst nightmare–having been in treatment for lung cancer for almost twelve years now. And being denied health insurance is my worst nightmare.

Fuck, fuck and more fuck. My only option was to file an appeal. Well of course I got right on that and faxed if off that very afternoon. And just to make sure nothing fell through the cracks, I call BeneDirect when I returned home to see if they’d received the fax. Confusingly, this representative told me that no, I had not in fact been terminated. That due to the holiday weekend lots of people had been late with their payments. And if I overnighted payment for December and January, my policy would remain intact. One more trip to FedEx and a big sigh of relief.

Until two days later when I received an email from the human resources representative at my ex-husband’s place of employment (they administer my cobra) informing me that in fact, my policy was kaput.

Many phone calls, emails, a few tears and several days of additional anxiety later, I logged on to see that my policy had been reinstated.

Man oh man oh man. I only have one more year of COBRA before being thrown to the free market (or the wolves, depending on how this administration sorts things out) but I’d rather not have to deal with that shit yet. Of course that doesn’t mean I can relax either. Like everyone else dealing with a chronic condition, I am nervous as hell that preexisting conditions and lifetime caps will in fact be reinstated.

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And if that happens, we can always just eat cake.

xo

It ain’t over ’til it’s over

Several weeks ago I got a call from a friend who is also battling stage IV lung cancer. He’d gotten bad news; very bad news. His cancer had spread in such a way that his oncologist felt he had only three months to live with treatment but half that long without.

My friend was devastated, as was I. We talking openly about dying—something he couldn’t do easily with his family. I told him that our connection would remain no matter what happened next. He said he loved me. I had the feeling that this might be the last time we spoke.

But I also reminded him that there was really no way to know if this was it—that I too had once been told I had come to the end of options and yet here I was. That he should hold onto hope, because his situation could still change.

Yesterday I got a text message from him. His latest MRI and CT scan had showed reduction of tumor throughout his body.

We spoke again last night–this time the mood far less somber. He was still in a tough spot, but could once more see the horizon. A return to chemotherapy had reduced his tumor burden but he was already looking for the next potential therapy. He sounded like a man with a future.

And this is on a good day

I’ve been out of control the past few months—driving, flying and riding trains. Taking care of shit and visiting folks. Having adventures. Tying up loose ends. And damned if it isn’t fabulous that I have the energy to do all this.

PF-06463922 has been my drug of choice (makes it sound a little bit sexier, no?) for more than seventeen months now and my cancer remains stable. That’s the longest I’ve ever gone on a therapy without progression and continued stability is my new mantra. The troubling side effects that I experienced initially have mostly disappeared although time management and memory remain a challenge and the neuropathy in my hands and feet is not going away. Some days I feel like I’m living with a very young child and someone who is elderly—they’re both me.

I am sharing my latest radiology report to lend some perspective. As I look so very healthy, (healthier than most healthy folks) it’s easy to forget that since the beginning of this journey (April of 2005), I have never been cancer free. That’s right—removal of my lower left lobe and four rounds of cisplatin and taxotere was not enough to push this crud out of my lungs. Since then I have always had a varying degree of cancer hanging around. At the moment, the situation is pretty good but this is what a good day looks like:

Lungs and Airways: Central airways are patent. A 1.9 x 2.8 cmlingular subpleural opacity and 5 mm subpleural right upper lobenodule (image 40) are unchanged from 10/7/2014. Several 3-4 mmpulmonary nodules are unchanged from 10/7/2014 and are found in theright upper lobe (image 29, 37, 46, 52) and left upper lobe (image45, 54). A 5 mm subpleural anterior right upper lobe ground glass nodule (image 48) is unchanged from 11/19/2014. Subpleural ground
glass nodule in the anterior right upper lobe measuring 6 mm (image
45) is unchanged from 10/7/2014. A 4 mm superior segment right lower
lobe groundglass nodule is unchanged from 1/19/2014 (image 43).
Additional left upper lobe groundglass nodules measuring up to 6 mm
(image 50) are unchanged from 10/7/2014.

If I was just being diagnosed we’d all freak out. As it stands, this is a great report.

My cancer and I have been sharing the same body for almost eleven (known) years now—that’s 1/5 of my lifetime. Wrap your head around that. During that time I have been to the edge of possibility and back again, a looping cycle of dying, hope, disappointment, loss, more hope and a whole lot of living mixed in.

It can be a real mind fuck.

The Boston Globe has a new online medical magazine called STAT. I was interviewed (print and video) for an article about the emotional roller coaster faced by terminal patients who are given the opportunity to try high risk experimental therapies. Clinical trials offer hope (our favorite word) but responses are not guaranteed and when they do occur, are of unknown duration. All that uncertainty can really mess with your head.

http://www.statnews.com/2015/11/04/for-cancer-patients-breakthrough-drugs-are-saving-lives-but-wrenching-souls/