Category Archives: Coping

S.N.B.T.H.

That’s my go to complaint. It really should not be this hard. But it is.

Health insurance. Didn’t want to fess up but I’ve been without it this past month. Long story short, the assistance I was counting on per making my selection did not come through (not responding to emails is such an easy way to blow someone off) and when I showed up at the office in person instead (an hour drive, each way) I learned that A. I had missed a deadline and B. I needed to go back home and get on the phone with the folks at the Mass Health Connector anyway.

So….I cancelled my appointments for September and before I left the hospital, stopped by to see my clinical trial nurse. I should always talk to a nurse when I have an issue—no one is more empathetic, more pragmatic or less likely to take shit or no for an answer than a nurse. I then made arrangements with Alice to contact the sponsor to see if I could get drug even though I was not coming in for my labwork/echocardiogram.

Arrangements were made to have my drug mailed to me (not quite without a hitch–they forgot and it had to be overnighted) and I figured out (on my own) which policy would work best for the remaining three months of this calendar year–a higher premium, no deductible plan. As my income is 360.70% of poverty (yes) I qualified for a tax credit which brought my premium down by $127.00 a month.

I feel better when there’s something in my checking account, so I waited until last Friday, three days prior to the deadline, to choose my plan. Because the 23rd (the deadline you have to pay your premium by in order to get health insurance for the following month) was on a Sunday, I needed to get my online payment in by that afternoon. When I attempted to log onto my account, the system did not recognize me. I called back, and was offered two options—drive an hour to Boston to make a payment in person or wait another three hours at which time I was assured my account would be active. I gambled on the latter. Three hours later I still did not register and I placed another phone call to the Health Connector. This time I was again assured (and by now I was in tears) that even though it wasn’t working now, my account should be online by the next day, Saturday.

‘I don’t think you understand’ I explained to the woman on the other end of the line. ‘I am a cancer patient, I already had to cancel my appointments this month, because I had Cobra if I don’t get insurance by the end of this month I can’t get it until January, and if I don’t have insurance for next month, I will have to cancel my appointments again in October and will likely be kicked out of the clinical trial I am enrolled in. I need to know that this is going to work.’

I had a good cry after hanging up and a giant pit in my stomach. And, just as I’d feared, I was never able to access my account.

So I called first thing this morning only to learn that their entire online system was down and that I would need to call back later. I did, two more times. By this afternoon it was finally up and running and I spent an hour on the phone with a very sweet and patient representative. By the end of our phone call I was talking to someone else–an account specialist–as it had been determined that there was a technical error on their end–my billing account had never been activated.

I was given a case number, as this would now have to go into resolution. And I was now informed that I could have health insurance for October but only if I paid for November as well, even though the mistake was theirs. The reason being that the system would not recognize my retroactive payment as an active subscriber as we were past the billing period unless I paid for the next month as well.

Sigh.

The dollar amount for two months of premiums exceeds the amount I currently have in my checking account by several hundred dollars. As in, not doable. I have been told that my case will take several days to resolve. I have to hope that by then my alimony check will have arrived so that I can make the payment.

Caseworker y’all. It would be so great if I could worry about staying healthy and somebody else could help me with this other crap–all of which is a cumulative side effect of years of living with cancer as well as clinical trial participation. Cognitive, financial, emotional toll; unrelenting stress. The wear and tear of dealing with an advanced cancer for almost one quarter of my life.

It’s hard, really flipping hard. And until there are more supportive services in place, it’s not going to get any easier. As in, bucket list, my ass. I’m just trying to get by here.

Deepest Indigo

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Depression is having its way with me.

Yesterday I took myself to Five Guys for lunch. A small cheeseburger, fries and a chocolate malted. Not so bad, as I am working out again.

But then dinner rolled around and so did my gloom, just like a bank of fog. I started with a glass of white wine (that bottle was staring at me so I just decided to kill it). Some black licorice. Five olives. A beer and a banana. Cereal with goat milk kefir and frozen blueberries. My repast all over the place, just like my mood.

I feel as if my schtick is strength and positivity. For the curriculum vitae I am putting together I have Adversity Expert as one of my skills (given my lack of actual substance, I am taking some creative license with my CV). And honestly, I feel as if I am letting some of you down by so openly sharing my current depression.

However, in the name of keeping things real, this is part of it. Any one of the stressors in my life (emotional, financial, physical) is enormous and when you add them all together, it is, on a good day, extremely challenging. And on the bad days–overwhelming.

What I am describing is OTSD–ongoing traumatic stress disorder.

Yes, I am unusually resilient. However, almost thirteen and 1/2 years of dealing with this shit has taken its toll. Last night I managed to waken myself from a nightmare because (and I distinctly recall saying this to myself) ‘I don’t want to see where this is going.’

If only it were so easy to walk away while awake.

So please bear with me as I move through this tough place. As my Granny B was fond of saying, ‘this too shall pass.’ And so it shall.

Words: the worry and the wonder

Approximately eighteen months ago an old friend said the most astounding thing to me. “I believe you’re healing.”

I had no idea what to make of these words and my first impulse was that this friend had truly misunderstood the gravity of my situation. “It’s stage IV, terminal cancer” I reminded him.

But then I started to turn those words around in my head. The idea of healing was so very compelling and yet seemingly beyond the realm of possibility. And to be clear, it was not a spiritual healing I was imagining, but rather corporal—that this diseased body of mine should become whole again.

Once I started thinking about it I couldn’t let it go. I was tired of being terminal. Thinking about dying all the time is a hell of a way to live, and I had already spent far too much of my life doing just that.

Finally, in an ultimate moment of WTF, I decided that I would embrace the idea of healing. That I would take that final leap of faith and simply resolve myself healthy.

I mean, what did I have to lose? Believing I was healed, even if it wasn’t quite true, could only make my life better.

And so it has. Of course, that resolve was tested with my last scan but damned if it didn’t turn out A-ok. I had a little chat with Dr. Shaw and told her that some days I felt as if I was cured. Rather than discouraging me she simply said ‘Good.’

The truth is, nobody really knows. Certainly my lungs aren’t clear, but then again, with all they’ve been through, it could be scar tissue that we are seeing on the scans. In the meantime, I feel fabulous. And, frankly, healed. A feeling I am determined to hang onto for as long as possible.

xo

 

It’s a jungle out here

Pretend for a moment that one hundred people are standing in front of you. The only thing you know about them is that they all have lung cancer. One at a time, each person approaches you and then shares some intimate detail about their lives. Sometimes you sense that you have much in common with the speaker, sometimes little. In each case you get an overwhelming sense of their humanity.

You are thinking about how you would like to get to know some of them better when I drop a bombshell: only eighteen of these people will be alive in five years.

It shocks you but I assure you I have not told you this merely for dramatic effect; statistically speaking, this is an actual scenario. The five year overall survival statistics for all stages of lung cancer cancer are only 18%. At stage IV, that number drops to 2%, or just two individuals out of one hundred.

Statistics only tell part of the story because numbers are not nearly as compelling as living, breathing human beings.

Now imagine what it’s like to be one of those hundred; that you too have been diagnosed with lung cancer; that you too will fall somewhere along this statistical curve.

It is a terrifying feeling, and isolating as well–as many of us feel that friends and family can’t really comprehend the sometimes debilitating anxiety that is part and parcel of our diagnosis.

We often combat that feeling of isolation by connecting with others people living with lung cancer–through support groups, social media, summits, or advocacy work. However, this network can become a double edged sword, as we are now invested in each other’s outcomes. When one of us passes away, a collective shiver runs through the entire community. We grieve, we rage, but we also rightly wonder if we might be next.

Over time, it becomes a trauma–this mix of fear and sadness. And for those whose cancer is considered incurable–and in the case of lung cancer, that would be most of us–there is no post to our traumatic stress. It is ongoing, or OTSD.

We focus on staying alive even as we worry–constantly–about dying. And, because we often don’t look as if we are ill, it is very, very difficult for those around us to fathom what it’s like to live on borrowed time.

Can you plan a vacation six months from now? Is it worth spending the money to get your dental work done? Will you be there when your kids graduate from high school?

As a society there is a great deal of emphasis on planning for the future. When you are living with cancer, it often feels as if the future has nothing to do with you.

I’ve now been living with the idea of dying for over twelve years–more than 20% of my time on earth. How do I do it? One day, one moment, one person at a time.

 

xo dedicated to all we’ve loved and lost–far too young, far too many

*thinking of you, Kimberly.

 

 

Losing it

Earlier this week I made my morning cup of coffee immediately upon rising, just as I always do. But then I couldn’t find it. Anywhere. And I live in a one room loft. I also left my eyeglasses at a local restaurant over the weekend and as their staff’s search turned up nothing, I’m going to have to buy a new pair. Yesterday I misplaced the bra I was planning on wearing. I later found it in a bowl of oranges. Don’t ask, as I couldn’t answer, because I simply do not know.

Sometimes it’s funny, other times it’s frustrating as hell.

All these years of clinical trials and continuous treatment are catching up to me. Add in menopause and advancing age as well as the fact that I live alone, in itself a rather extraordinary thing for a person dealing with a terminal illness.

Yet there is an upside. I am now convinced that children have incredibly short attention spans by design (so to speak). That if they were able to mull, ponder and plan the way adults do, they might well waste the precious time allotted to childhood. There is a magnificent advantage to a wandering perspective–so incredibly well suited to experiencing the world with eyes wide open and without bias.

With my limited ability to recall, I am rather like a child. Everything feels fresh and seemingly brand new. My focus is short, but also incredibly intense. At times it as if I am tripping, my senses tickled by any stimulus at all. As an artist, this is a boon. Emotionally, it can also be of enormous benefit, as I am no longer prone to extensive rumination; once upon a time, losing my (beautiful and expensive) blue eyeglasses would have undone me, at least for a time. I regret their loss, but in the same way a child mourns a broken toy–briefly.

It is only when I need to function as an adult; someone with responsibilities and hard deadlines, that this lack of linear concentration becomes a true liability. I would in fact consider it almost a disability, although one that is neither obvious nor fully understood by those around me. I believe that might be because my cognitive challenges don’t reflect diminished intellect but rather the increasing inability to retain, recollect and organize information.

I could use some help–some sort of cheery task master. Someone who would commit to a couple of hours each week to assist me with those chores I now find so daunting (paying bills, taxes, getting my vintage clothing business up and running, managing my finances).

I already devote well over a third of my income to health care and I think a personal assistant is likely a luxury above my means. However, I would like to propose that there should be some sort of federal agency (yes, I’m dreaming) akin to the U.S. Department of Veterans Affairs for clinical trial participants. That there be recognition (on the federal level) that in the war on cancer, clinical trial participants are serving on the front line. And that we, like veterans of other wars, deserve some sort of special consideration of both what has been given but also taken. Financially, emotionally, physically.

I’m committed to continuing to fight the good fight–and I do so gladly. With or without assistance. However, if anybody out there with mad organizational skills and a little spare time wants to come hang out, coffee’s included.

*if I can find it 🙂

Tested

Kumo can run like the wind. Before I knew his given name I was calling him Ghost but felt that Arrow might be a better choice.

I learned from the get go that giving chase is of no use–Kumo can run circles around me and does. He is also smart and wily and careful not to get close enough that his collar can be grabbed.

This dog absolutely will not come when called and is not tempted by a proffered treat. In other words, approach is totally on his own terms.

With Kumo’s history of roaming, I took no chances and had him microchipped during his recent surgery. But even with that precaution, there is no question that being off leash is something that can occur only in contained areas.

Kumo arises early, and our first walk is taken while I am yet a bit groggy.

This morning my thoughts were elsewhere when I had the unsettling realization that the leash in my hands was suddenly connected to nothing–evidently I had not attached it firmly to Kumo’s collar and it had come loose. Kumo was just ahead of me but at the same moment I realized he was free, so did he. And he was off like a shot, an arrow.

I didn’t know what to do and nor did he. The call of the wild and all those mourning doves were pulling him off and away. And yet, he did stop when he was a good distance away to look back. Suddenly he was running toward me again and for one brief second I thought he would return. Rather, he ran wildly to and fro, close to me, away again, exhilarated by his sudden freedom of choice. Because it really was up to him at this point.

As I sat on the pavement in the middle of the parking lot, my heart pounding, tears quietly rolled down my cheek. ‘This is it’ I thought, my dream of a little white dog over. And so I stood back up and walked slowly to the building. Maybe, just maybe he would follow. And if not, I would go get Appa, the great white Pyrenees who is Kumo’s first and best friend at Western Avenue, and try to lure my little wild thing back inside that way.

I shut the glass door behind me and Kumo came closer. The minute I opened it he bolted. When I closed the door a second time he cautiously approached. I opened it just a tiny way this time and to my great surprise and overwhelming relief, he came inside.

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At the moment he is laying beside me on the couch, pressed up against my arm as I type. We’ve had our breakfast now and he’s licked my bowl clean for me.

I think we’re good.

When you can’t remember shit

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Perhaps the best greeting card ever.

First, a blanket apology to anyone whose birthday I have forgotten this year. Same goes for all those unanswered emails, texts, phone calls, missed appointments and other no-shows.

Once upon a time I and my ability to recollect were reliable. As a child, I possessed an eidetic memory and when I wished to retrieve an event it was almost as if I were watching a movie of the past in my brain. According to literature the ability to remember things in an almost photographic sense disappears in adulthood, but I am a highly visual person and always utilized a sort of Hansel and Gretel bread crumb approach; when trying to remember something I would visually retrace footsteps in my mind until I came back to the thing I was searching for.

That is, until I started my current therapy, lorlatinib. A small molecule designed specifically to cross the blood brain barrier, lorlatinib is able to deliver drug to tumors within the central nervous system. This is great news for individuals with brain mets but it also means that there may be accordant cognitive side effects. I started early in the trial during dose escalation and at a previously higher dose than I am now taking, and those cognitive side effects were so pronounced that a few weeks into the trial I felt as if I could no longer process or reason. Fortunately lowering my dose improved that scenario but I still felt as if my memory had been completely wiped and that I had suffered something akin to a brain injury.

Because I was also in the midst of a nasty divorce it was hard to parse the stress from the effects of therapy, but suffice it to say that life was challenging.

Two years out I am not only still alive, I feel almost as smart as I used to be. However, my memory is still completely shot. Add advancing age into the mix, and I think it’s fair to assume that I will continue to do things like purchase airline tickets to the wrong city (last summer) or for the wrong day (upcoming trip). It’s a little unnerving and yet you know I like to look on the bright side (cue Life of Brian). Historically I was a mental ruminator, and often made myself miserable by reviewing unpleasant situations over and over. Well guess what! Not being able to remember shit sometimes comes in handy, and I no longer dwell on much of anything.

Although my memory challenges make life less predictable, I am learning a lot about flexibility, personal forgiveness, and a whole lot of scrappy. In the case of the flight to the wrong city, I rented a car (first time ever, alone) and drove the additional 400 miles to my intended destination.

So even if I miss the boat entirely (wink wink–see above), I know I’ll still get there. I just might not remember how.