Tag Archives: stage IV lung cancer

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

On Privilege

My morning ritual now is to roll out of bed, release Kumo from his crate for a brief hug and scuffle, pull on yesterday’s clothes, grab leash, keys and sunglasses before heading out the door for an hour-long walk with a little white dog at my side.

We have become a bit of a fixture in this neighborhood and it is no longer unusual to have people wave or offer a greeting. On this particular morning we saw a young woman jogging and I thought to myself that the U Mass students must be returning. Later, as we crossed a bridge, we moved over to let a young man on a bicycle pass. He too appeared to be a student–nice bike, preppy clothes, trim hair and eyeglasses, smelling freshly scrubbed as he rode by.

As pedestrians, we had the actual right of way on the sidewalk and yet it is my practice to move over for cyclists, a gesture which is almost always acknowledged with a smile or a thank you.

However, this young man, who looked the very epitome of privilege, did not appear to notice the woman and her dog (us), scrunched against a traffic barrier so that he could pass without dismounting. This irritated me–in a way that it would not have had he not possessed the air of privilege. I berated myself for feeling judgmental–perhaps the young man was simply shy and lacking in social graces.

However, it got me thinking.

One of the privileges of privilege is a special set of blinders; if you are privileged, you are also unaware of your privilege because it is something you take for granted.

Privilege is autonomic–like breathing, or the beating of your heart. If you are privileged, you don’t give it much thought–again, the privilege of privilege.

Of course, there are so many layers to privilege, something I was reminded of when we walked by a group of construction workers and one of them laughed in a lascivious way. It is a laugh I am all too familiar with–one that connotes a very different sort of privilege.

I gave this more thought. What a privilege it once was to lie on the beach rather than in a CT scanner. And what a privilege it is to lie in a CT scanner rather than on a table in a morgue.

It’s all relative, privilege.

 

Terminal, incurable, alive.

It’s a heady mix. You have advanced cancer which is, by definition, both incurable and terminal. And yet, thanks to ‘the wonders of modern medicine’, you’re alive–aka–not dead yet.

Because you prescribe to not just a glass half full but rather a ‘my cup runneth over’ mindset, you always try to stay focused on the bright spots. First, waking up in the morning. Never, ever, taken for granted. The chance to see your children even a few minutes longer–mind blowingly awesome. Meeting fellow travelers on this friggin ‘journey’–others who’ve been smacked upside the head with cancer–your life has been made oh so much richer by each and every one of them. And then there is the fact that you get to hang with your oncologist (a goddess) and a bunch of swell nurses—perk and more perks.

So yeah, you’ve been fortunate. And at the moment, you are on a targeted therapy that is keeping your cancer in check. You don’t even look as if you’re sick, let alone terminal.

Which, by the way, makes it very easy for those around you to forget that you have cancer at all.

But you, you’re always aware. Friedrich Nietzsche once said “That which does not kill us, makes us stronger.” Bullshit. Sometimes it just keeps on trying.

Each day you continue surviving is an achievement. It is also a tremendous struggle–physically, mentally, emotionally, financially. An endless struggle too, as there is no top of the mountain, no victory lap, no cure in sight.

The heady mix becomes a mind fuck. If you are lucky, you have adequate support. Enough resources so that you don’t live in a constant state of anxiety; friends and family with sufficiently long attention spans who don’t drop away when terminal becomes chronic.

Because the truth is, nobody wants to think about cancer all the time. My marriage ended, in large part, because my partner found our lives too ‘cancer-centric’. I’d break up with cancer this very moment if I were able to, but it seems we are one and the same. Cancer doesn’t just inhabit my body, on a cellular level, it is me. My own selfish, nihilistic and wildly dis-obediant cells.

Sigh. Living well may be the best revenge and most of us do whatever we can with what we have to work with. I’m certainly not interested in becoming a schadenfreude. However, when living itself (liv·ing: a : having life) is a big fat uncertainty, then living well often requires more psychic energy than a person can muster.

Short of curing cancer there’s not much you can do other than to be understanding. And supportive. It’s not easy living with the knowledge that you are terminal; harder still to remain happy while doing so. Honor that.

The pass it on power of media

Those of us who are ALK+ (alkies) have a Facebook group (ALK-I.E.S. Worldwide–it is a closed group–limited to those who are ALK+, message the moderator for permission to join) started by Tom Carroll and his wife Merita (Merita is the patient/mutant). This group operates as both a forum and a source of support, and has a growing membership of ALK+ patients and their caregivers which is worldwide.

Earlier today one of the members asked for the link to a story I appeared in some eight years ago, on June 2, 2009. They were inquiring as they’d been introduced to Bill Schuette, another ALK+ patient, and he had referenced this particular news story while talking about his own cancer journey.

I found the link, which was kind of fun as I had not watched it in years. More fun still, in the ensuing online conversation we learned that Bill provided essential information to another alkie, Catherine, who in turn helped Jeff, also ALK+. Bill himself joined our conversation and provided a link to a video he made at MGH. Watched in conjunction, our two videos are such a splendid example of how media has the (exponential) potential to help someone else. And social media serves the same purpose–as we make connections and share information and resources.

Linnea and Bill. Connected 🙂

 

Not the usual suspect

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The view out my window

Since moving to Lowell I have been taken for an undercover cop (two occasions), a prostitute and now, perhaps, a suspect. Maybe I missed my calling and should have been an actor.

About those cases of mistaken identity. I spend a lot of time traipsing around, my chief form of local transportation and exercise as well. I walk alone–well, I did, prior to Kumo coming into my life. And I am a woman–a woman walking alone in my neighborhood is less common.

The first time I was mistaken for an undercover cop, I was moving fast but also stopping occasionally to take pictures with my cell phone–all for art. However, that’s likely not how it appeared to the group assembled on a front porch nearby. As I passed, one young man stood up and aggressively greeted me; ‘Hello Officer.’ I kept walking but was so caught off guard that I turned to him and said ‘Who do you think I am?’ At which point one of his companions, a woman, yelled back ‘You know you are!’

I was both confused and somewhat shaken–obviously being mistaken for a cop was not something that commanded either affection or respect. When I got home I googled ‘what does an undercover cop look like’ and was surprised to see that I fit the description perfectly. Tall, fit, hair cut short. Wearing jeans, t-shirt, athletic shoes. Yep, that was me.

The second time it was just a bunch of kids smoking weed and I think I simply glanced a little too long in their general direction.

And as for the prostitute–I was coming home from Boston one night on the train and got in well after dark. I wore a summer dress as I walked home from the station–alone. I was waiting for the light to change on Lord Overpass and an older guy in a car slowed way down, leaned out his window and said something that made it clear he thought I was soliciting. Well now.

But yesterday took the cake. Two days ago a woman was murdered several blocks from where I live and her suspected killer, who had previously served time for slitting another woman’s throat, has not been apprehended. A couple of helicopters had been hovering overhead for thirty-six hours, presumably part of the search. I took Kumo out for his afternoon walk and as we headed downtown, almost two dozen squad cars, marked and unmarked, went whizzing by–sirens wailing. I thought perhaps the manhunt was coming to a conclusion.

As we circled back to our neighborhood, I saw that there were now five helicopters. A block from home I took out my phone to video this crazy scene and had the distinct feeling that I was being watched. I looked up and one of the helicopters was hovering directly above me, where it stayed for some time. What the hell, I thought.

Finally it moved on and when I got home I opened an email from one of my neighbors with a description of the suspect. Male, with my coloring, neck tattoos, 5’10” tall and wearing jeans, a blue zippered hoody, and black and white tennis shoes. Wrong sex, same height, but damned if I wasn’t wearing exactly the same clothing.

I have to imagine that up there in those police helicopters, they have some sort of way of estimating height but probably also a facial recognition system, which would have quickly let me off the hook. However, sometimes it’s all just a little too close for comfort.

Each of these instances is also an interesting commentary on the assumptions we make about each other based strictly on appearances–how extraordinarily off base those assumptions can be. In my case, I am who I am. Someone who is both less healthy than she looks and more healthy than her diagnosis would suggest. Strong enough to be out and about and even mistaken for those in wildly different walks of life. So much more than just a lung cancer patient 🙂

Twelve. And counting.

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Twelve years ago today I was forty five years old, my youngest child was seven and I was sitting in a hospital bed. I’d been admitted four days earlier after several weeks of antibiotics for a walking pneumonia that just wouldn’t clear up. A CT scan the previous Monday had revealed a large mass in the lower lobe of my left lung and the differential diagnosis was recalcitrant pneumonia, fungal infection or a neoplasm.

I didn’t know what a neoplasm was but my husband’s face had fallen when my general practitioner spoke that word. After she left the room he explained that it was another word for cancer. We’d then driven directly to the local hospital where I was placed on IV antibiotics.

Those first days were awful. I was in a room with three other woman, one of whom was dying and another who’d had a severe asthma attack. As I lay in bed I worked incessantly on my laptop researching everything I could about lung cancer. One thing stood out–the dismal five year survival statistics–15%.

The day of my biopsy the patient before me was a prisoner, handcuffed to his wheelchair and accompanied by two officers. When my turn came the surgeon performing the procedure told me that it was highly unlikely that I, a young never smoker, would have lung cancer and that what he was seeing on the CT scanner looked like a fungal infection.

After the biopsy I had to lay very still for several hours without speaking so as to minimize the chances of a pneumothorax. This was difficult as one of the attendants was someone I casually knew, and she kept asking me questions. My lung did partially collapse, as it now has every single time I’ve had a biopsy.

On Thursday morning my doctor came to my room first thing. My husband hadn’t arrived yet and she stalled, telling me a protracted story about her daughter and some dramatic production that featured a field of sunflowers. She said “You know, a sunflower represents hope.”

When my husband entered the room my doctor got right to the point. “I’m sorry but you have lung cancer.”

I really don’t remember anything she said after that as both my vision and my hearing seemed to have suddenly constricted. I had this sensation that I was in an airplane and it was going down. My husband would end up having to call my family members–I was simply too devastated to speak to anyone.

However something incredibly fortunate happened later that day, something that changed everything.

I was assigned an oncologist, who spoke to me only briefly. That evening my husband called him with a question and this oncologist was incredibly rude. We decided that he was not someone to whom I would like to trust my care. And so my husband immediately called one of my dearest friends, whose husband was a surgeon, asking for their opinion as to a good doctor.

Her husband had done his residency at Massachusetts General Hospital, and he gave us the name of the thoracic surgeon he had worked under. And that is how I ended up at a major research center rather than a local hospital. Because of one rude oncologist. To whom I actually now owe a thank you.

#twelve&counting

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.