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 ūüôā

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.

Little love

I suddenly find myself in a committed relationship, and nobody could be more surprised than me.

Although there are certain things I’ve missed about having a partner, I have relished living alone. Going to bed at all hours of the night and sleeping in as well, with nobody in that bloody bed but me. Playing loud music, keeping my own schedule, eating what, when and if I feel like it. Staying inside all day long, wearing anything I want or nothing at all–a beautiful way to become more comfortable in one’s own skin. It’s been a long, blessed vacation of sorts.

But then I met somebody. Or rather, my friend Brian did, wandering around out by the train tracks.

This somebody was a wee white dog and he seemed to be lost–a bit disoriented and clearly frantic. It was cold and dark outside–no place for a lost pup–and Brian asked me if I would help corral the little fellow.

That turned out to be easier said than done as our new friend was not about to let us get close to him. So Brian and I spent thirty minutes running around and chasing this wild little dog back and forth, doing our best to corner him so that one of us could grab his collar.

The situation looked hopeless until our neighbor Howie came outside with his great Pyrenees, Appa, whom the little stranger took a great interest in. Then Marianna joined us with her two pups and between the four humans and three dogs we were able to lure the stray close enough that Howie was able to grab his (tagless) collar.

Marianna provided a crate and Brian said our guest could spend the night in his loft. The next morning Brian texted me that he had some previous commitments and so I agreed to walk our little friend. When I let him out of the crate the first thing he did was grab a cat toy and start tossing it in the air. I was charmed and ended up hanging out for two hours until he trusted me enough to approach. And then I took him back to my loft along with the crate.

Several days passed with no word from Animal Control. We decided to take the dog to a local vet to see if he might be microchipped but he was not. By this point I’d given my guest a flea bath and he was sleeping in my bed rather than the crate. And, of course, I was growing fond of him.

But then, on day five, his family called. We learned that our visitor’s name was Kumo (Japanese for white cloud–I’d been calling him ghost). And I said I’d be happy to bring him to them the next day.

That last night together was bittersweet but then again I imagined how happy both Kumo and his family would be at his return.

The reality was slightly different–although they had a teenage son, there were also lots of people in and out of what appeared to be a very chaotic household. Most troubling, Kumo had run away on a Friday evening but they hadn’t even noticed he was gone until the next day. The woman asked me if I loved Kumo (yes, I did). She told me that her husband was ill and that she wasn’t really sure if she could handle the care of a dog–and that she was considering tying him up inside the house to make sure he didn’t escape.

I left her with my name and number but my heart was heavy as I closed the door. However, the reality was that Kumo belonged to this family, not to me.

One week passed and the woman called. She told me that Kumo had run away several more times and Animal Control had warned the family that they would begin incurring fines. She asked if I wanted Kumo. I told her I would call right back–I needed a moment to think.

But of course the answer was obvious.

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Kumo

My free dog has turned out to be quite expensive between some gastric upset, all his shots and neutering (something you get a certificate of bravery for–who knew). He has severe separation anxiety and clearly has had some mistreatment in the past–he ducks when petted, gets frightened easily, and absolutely will not come when called. In other words, in need of some tender loving care.

And I have realized just how much I missed the act of nurturing as well as having a companion.

In gratitude

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So I’m about to tell you something that is either going to make you laugh or cry. Or not. Maybe you’ll just want to punch me in the face.

Sometimes I get really, really tired of being grateful.

Awful, isn’t it. I know how flipping lucky I am to be alive and most days, my gratitude is boundless. However, twelve years of being grateful for something most people take for granted (waking up in the morning) actually can get old.

As a cancer patient it is expected and accepted that you will feel all sorts of less than pretty emotions. Anger, sorrow, frustration, fear. Confusion. Depression. Bone deep weariness. All taken in stride.

But ingratitude?

The minute I start feeling anything resembling self pity I quickly self admonish. Because I am only too aware what the alternative is.

Those of us with terminal illnesses set the bar both impossibly high but also brutally low.

There is a self conciousness to life when every moment is fraught and at times I dearly miss the insouciance of before. As in, before cancer. The self awareness I have gained has been prompted by significant and persistent provocation. I am both wiser and sadder. And some mornings I’d just like to skip that part about being grateful.

Not because I’m not, but rather because there was something glorious about being so certain that something was due you that giving thanks never even crossed your mind.

I am beyond either innocence or assumption. And that’s ok. I have scans tomorrow, and an appointment with Dr. Shaw next Tuesday. The scans I could do without but the appointment with Dr. Shaw? There is no place I’d rather be. And yes, I will be feeling enormous gratitude.

How many ways can cancer break your heart

Seemingly the possibilities are endless.

Upon first hearing ‘you have cancer’ we were forced to face the specter of mortality; in our face and way too close for comfort.

Next up was the impact our diagnosis had on friends and family and if we were parents, our children–now suddenly faced with challenges that had no rightful place in the happy childhood we’d imagined for them.

Loss was a word that soon figured largely in our everyday existence, with bodies that suddenly looked and felt very different as cancer became part of our identity on both the meta and purely physical level.

Stress and anxiety—our finances, interpersonal relationships, jobs. Everything was suddenly at risk.

However, that didn’t stop each of us from trying to put a brave face on. We sucked it up and made an honest effort to find the silver lining in cancer. Certainly there was opportunity for personal growth, but at a cost oh so dear.

And then we discovered that the one really good thing to come from our disease was each other.

Since my diagnosis, I have had the privilege of knowing, interacting with and often growing quite close to an incredible assortment of extraordinary individuals. Brave, gracious, generous, kind, caring, fun. Lovely, lovely people who have made my life so much richer.

However, there is an obvious downside to falling in love with others who are battling cancer and that is the potential for heartbreak.

Last week the lung cancer community lost someone who had touched the hearts of many. Maybe it was her youth, the fact that she was a young wife and mother, or perhaps it was Elizabeth Dessureault’s¬†radiant smile and outgoing personality that made her so appealing and accessible.

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Her passing took us each by surprise and the ripple of grief soon became a big wave. Shock and sadness turned to anger and for some, fear.

The truth is, you can have the best oncologist in the world (Elizabeth, like me, saw Dr. Shaw) and although your odds may be improved, the course of this disease remains ridiculously unpredictable.

It is all so very disheartening.

And yet. There is only one way to go and that is forward. You and me. Live and love some more. Because every moment is precious and no one is assured a tomorrow.

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

Whoa

Has it really been more than a month since I’ve posted? It has indeed and what a month plus–lots of water roiling under that bridge.

So where to jump back in…perhaps with my last scan result, which I think I just sort of skipped over. Things look really, really good with the worrisome area in my right lung settling down; maybe¬†even receding a little. I have scans again in five weeks and in the meantime I’m just going to keep busy with lots of positivity. To that end a friend of mine shared that he felt certain I was ‘healing’. It took me aback at first. I’m a truly optimistic person but the notion of healing just seemed over the top–that is, until I looked at that word in a holistic sense and then I realized he was absolutely right. Between mind, body and soul I am feeling extraordinarily healthy–maybe even the best ever (and I’m sure tomorrow will top today).

I’ve had a couple of truly meaningful adventures (all three thanks to LUNGevity) since I last posted. On October 21st I had the privilege of attending LUNGevity’s 2016 Science Meeting; an annual event where grantees (a big part of LUNGevity’s mission is funding medical research in lung cancer) in the areas of Career Development, Early Detection and Targeted Therapeutics gave five minute presentations in addition to a poster session about the progress they are making. It was sort of like a mini ASCO up close and personal but focusing exclusively on lung cancer.

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And then on November 9th I traveled to NYC for LUNGevity’s Celebration of Hope, their annual gala held at the beautiful Mandarin Oriental. It was an incredibly special night all the way around. Andrea Ferris, Linda Pressman Wegner, Dr. Upal Basu Roy and the rest of the LUNGevity staff feel like part of my extended family now and it is always fun and inspiring to spend time with them. My dear friend Melinda Lee was my date for the night and Rob Densen and his daughter Arielle, fabulous friends of mine that I see too seldom, joined us. And of course, some of my fellow survivor/advocates/friends were also in attendance–Alisa, Dolio, Amanda. Always good to hang with them.

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I suppose I would be remiss if I failed to mentioned that I was honored that evening with the Survivor Face of Hope Award. I should also add that this meant the world to me, coming from an organization that I have so much respect for. And although some in attendance hoped I’d give a speech without notes (think HOPE Summit 2016) I stuck to the script–I absolutely cannot be trusted to be spontaneous, for a whole variety of reasons.

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Photo by Alisa Kaye Brenes

Well, I’d barely gotten my bags unpacked when it was time to leave for Indianapolis and a tour of the Lilly Labs. My inner geek was thrilled–interacting with members of the Lilly team and a few cancer cells as well–viewed at a safe distance through the microscope. And of course, I also got to spend some quality time with my fellow advocates. Never a dull moment!

Matt, Katie, Linne, Melissa and Kelly.

Matt, Katie, Linnea, Melissa and Kelly.