Category Archives: Coping

Riding the wave

Water is such an excellent metaphor/medium when I think about this life of mine. At times I have been out to sea. Adrift, drowning, occasionally frozen. Pummeled by one big wave only to have another come crashing down the moment I came up for air.

I love water. My childhood home abutted an irrigation pond the size of a proper lake. I spent winters skating and summers swimming. When iced over, the pond would sometimes groan just before a crack ripped across the surface. In summer I would lie with my face pressed to the boards of a wooden raft, watching as fish schooled in the green dappled water below.

In terms of metaphor, the last few months have resembled a tsunami. As indicated previously, moving was not my choice. Originally my landlord wanted me out by June 1 but we reached an ‘agreement’ allowing me to stay until August 31. That meant I had a little less than four months to pull it all together—locating housing, packing up, moving. My almost three week trip to Italy had already been planned, and I also traveled for advocacy. So four months quickly became three.

Physically, this is one of the most difficult tasks I have ever undertaken. As my loft had been a live/work space, it housed my vintage clothing business, art studio and the accoutrements of everyday life. I am also what is euphemistically referred to as a collector; inquisitive/acquisitive with books as one of my greatest sins. This was a monumental task.

However, I’ve learned a thing or two about crisis management. One foot in front of the other and don’t look down. I focused first on finding a new apartment. It had to be affordable, dog friendly, close to Boston. Ideally I would know someone in the area.

I put a lot of effort into finding just the right place but I also lucked out. Our new home is fabulous—the bottom floor of an old house in Bradford, MA. My dear friend Marc is half a mile away–I can walk there in under ten minutes and we are now in the habit of sharing a glass of wine on his front porch. With Marc’s help I located a dog sitter for Kumo three blocks away. The neighbors are wonderful and the mailman keeps dog biscuits in his pocket.

Moving proved incredibly stressful–at times both improbable and seemingly impossible. However, I am mighty proud of the fact that I got it done. Conceivably that mighty wave could have swept me under.

Instead I found a way to surf the damn thing.

Giving Tuesday

S’alright. Shameless (make that proud) pitch for two of my favorite organizations on Giving Tuesday.

First, Camp Kesem. Honestly, I don’t know how my family would cope without Kesem in our lives. This free (yes!) camp for children impacted by a parent’s cancer diagnosis has played such a positive–make that transformative–role in our son Peter’s life.

Peter at Camp as well as a quote from him (Coati is his camp name).

Only seven years old when I was diagnosed with lung cancer, Peter’s childhood had a shadow over it. The summer he turned eleven, we were told I had three to five months left to live and both Peter and I began counseling. Obviously I didn’t die then, but we were all traumatized.

I had to talk Peter into camp and could only hope it would prove to be a positive experience. He came home from his first Camp Kesem MIT (college students from around the country both staff and support chapters) with the assertion that it had been the best week of his life.

Peter continued to be a camper right up until he aged out and now that he is a student at MIT, he is a counselor. His fellow campers and counselors are part of Peter’s extended family–a family that gets what it’s like to grow up with cancer in the house.

Last fall I had my own opportunity to attend ‘camp’ in Peru, as a fellow with A Fresh Chapter. Unlike Peter, I required no urging. However, my experience was every bit as transformative for me as Camp Kesem was for him.

Like Peter, I was surrounded by others who got my experience with no prior explanation required, as each of us had been diagnosed with cancer. For two weeks we worked in the morning as volunteers in the communities surrounding Lima. After lunch we’d sit in a semi circle of comfortable chairs in a large room that overlooked the ocean. Many magical conversations happened in that space and along the way we formed an unbreakable bond. My tribe is now part of my extended family–twenty three people that I love and respect to the moon and back.

So please, on Giving Tuesday, consider supporting one (or both) of these two life changing organizations.

Camp Kesem (Peter Duff’s fundraising page 😉 or A Fresh Chapter. And help spread the gift of healing.

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 🙂