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Words matter and this one’s gotta go

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Yesterday was National Cancer Survivors Day, and I just went meh. Wait–make that hell no.

I don’t ‘do’ Survivors Day. My lack of enthusiasm is manifold. First of all, cancer is not a damned day. For many of us, there is no life ‘after’ cancer. Nope. As I’ve said before; been there, doing it. This is present tense.

And then there is the word survivor. I loathe it. Survivor is too much, too little, too late. If you haven’t stopped to read the definition of survivor lately, let me refresh your memory:

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Yuck. Who wants to be the ‘person remaining alive after an event in which others have died.’ Or the ‘remainder’. I suppose someone who ‘copes well’ is a good thing but then again, a rather serious understatement when you are talking about cancer.

The word ‘survivor’ is inadequate. It is also implicitly negative/ugly. No one wants to be ‘the sole survivor of a massacre’–we want everyone to survive. Ever wonder where survivor guilt comes from? Look no further.

In the past I have referred to myself as ‘surviving cancer’. The verb vs noun thing seemed to better capture the fact that I am now and likely always will be in treatment.

However, after thirteen years of surviving, I’m sick of this shit.

From now on, I reject both verb and noun in favor of a far more positive/forward thinking term. I am living with lung cancer.

And you know what? There is no guilt associated with being alive. If you’re not already there, join me.

xo

 

O yeah

So I suppose I’d be remiss not to mention that Alice (Dr. Shaw) and Linnea (moi) are featured in an article in the March 2018 issue of O, The Oprah Magazine.

It’s a solid to have the subject of lung cancer receiving notice in a major publication such as O, so thank you Ms. Winfrey 🙂

And for those of you without access to the print magazine, O has put the article up online as well: Thanks to New Science, Lung Cancer Patients Are Living Longer Than Ever.

I’d also like to express my gratitude to the author of the article, Leslie Goldman.

Deep Gratitude

When I was first introduced to Christian Nataline, we had three notable things in common: lung cancer, an ALK mutation and the fact that Dr. Alice Shaw was our oncologist.

Chris immediately reminded me of my oldest son, August. It was also obvious that he possessed a scrappiness not unlike my own. Because of our age difference, I felt protective of Chris, but understood that we were compatriots; fellow travelers in that strange place called cancer.

In the seven years that we have been friends, Chris and I have talked about almost everything under the sun. I have learned a lot both about and from Chris, and it has been my immense pleasure to see this young man grow from someone who was angry and afraid into someone so very self aware and strong.

Chris has hit a rough patch, with improvement in his lungs but additional mets to bone and brain. And yet he’s meeting this fresh challenge with aplomb and formidable grace. This morning he sent a message out on Facebook and I was struck by his mention of both privilege as well as noting the contribution that previous cancer patients have made. It touched me immensely and I asked him if I could share.

One of my favorite photos of Christian with his daughters.

Good morning everyone.

I just wanted to thank everyone for praying, following and supporting me over the the last 7 1/2 years.

I love my life. Sure I’d love to be cured but other than the obvious my family and friends and our earth are my reason to fight. There are too many of you who I care about to lay down my sword and give in. I’m fighting this disease for myself and my family and for the ones who have or will be diagnosed with cancer in the future.

I feel obligated and privileged to be one of the lucky patients who get the opportunity to be part of clinical trials that will eventually lead to a cure for myself and to save you or your loved ones but I couldn’t do this one on my own.
My doctor Alice Shaw from MGH is the leading Lung Cancer specialist in the world and she’s been there for me since day one. She calls me on Saturdays and weeknights after 14 hour days and to have her in my life has been a godsend. She has been so supportive and hopeful even when the waters are dark and the waves roll in. She’s the buoy in the open sea that keeps me from drowning alongside Melissa Johnson in Nashville at Tennessee Oncology–which has more trials available than any other state in the country.

And I can’t forget my team in Orlando at ORMC including Jennifer Tseng and Dr. Rama Krishna–my oncologist and radiologist in Florida who keep me stable and make sure the procedures are keeping me healthy and upright while I wait for the next life-saving medicines. It takes an army. The scientists all over the world are the reason I’m doing as well as I am today with all of their extremely difficult occupations in a race against time and road blocks. I’ve been getting medicine that the majority of people in the world don’t have access to so saying I’m grateful for them is an understatement.

Angel Flight has been a pivotal tool in my survival. Without them I wouldn’t be here and the fundraisers have saved me from losing everything multiple times so I owe my life to all of you. My family hasn’t given up on me even though I’ve said and done things out of fear and anger but it’s only because the thought of leaving this world sets my insides on fire. I don’t have enough skin on my back to return the favor to the hundreds of people who have reached out to save my life BUT THANK YOU for taking interest and not turning away from my struggles. I know it’s depressing at times and scary and overwhelming but I’m an open book. It’s been empowering to be in a position to pave a path for those who need life-saving medicine.

Rest in peace to the people who we have lost over the last century from cancer. They have opened many doors for myself and everyone who is fighting today. They haven’t passed away in vain. They’ve led the charge just like those who were drafted in wars over the years. We can’t run away from cancer. We have no choice but to fight with every breath for the sake of our lives and for everyone on this planet so we can return to our families and grow old with them. There is no retirement in this field until the cure is found but it’s coming. I promise you that.

#steadasshegoes #neversaydie #love

Oh yes you can

When it comes to life, I am not adverse to dreaming on a large scale (go big or go home). And yet I remain ineffably grounded in reality. Words such as scaleable and practical come to mind. And, my all time favorite, doable.

I like doable because it is a word that neither dashes hope nor over-promises. Doable simply says, this thing could be done. Put another way, it is possible. And that leaves a lot of latitude.

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And the phonetic rendering is absolutely charming…

When I first learned I had cancer and specifically, lung cancer–I knew I was heading into some stiff winds. However the little voice in my head said, ‘This is going to be hard but I can do this.’

That can-do attitude has served me extraordinarily well, and the word can’t has been pretty much excised from my vocabulary.

The truth is, some words just aren’t particularly useful. Take cure; that word is absolute bullshit. First of all, the meaning is nebulous: ‘relieve (a person or animal) of the symptoms of a disease or condition’. Secondly, the impact of a word like cure is potentially nefarious.

Everyone with cancer wants to be cured. Far too many of us have been told we never will be, that our cancer is ‘incurable’. The distinction/distance between these two supposed states–cured and incurable–is one of immense emotional devastation.

It you are incurable, than what can you possibly hope for?

Well, how about being healed. Whereas cure may be a technical impossibility, (and do remember, these are words, all words, not necessarily realities), healing is actually incredibly doable. The definition of healing is ‘to become sound or healthy again’.

So do it. Reframe the way you regard yourself. Discard that which is unhelpful and even hurtful. Embrace where you are at at right now. Heal yourself.

xo

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It’s me, Linnea :)

Last night I drank half a bottle of wine and ate half a pint of ice cream for dinner. Had you been here, I would have offered you the other half(s). My sugar and grapes meal was a celebration, as yesterday I learned that my scans are still stable.

This felt like a big deal because the previous scan of my lungs had been flagged for possible progression. That was three months ago and I didn’t get anxious until the day before yesterday, when that old familiar feeling of dread hit me like a ton of bricks.

Back in the day I might have bounced this anxiety off of my spouse, but I am now more than four years into traveling solo. Although I am one tough mother, (and have a t-shirt that says as much) some days just being strong doesn’t quite cut it. Fortunately I have learned how to ask for help when needed and I put a plaintive plea for a group hug out on Facebook. And the love just started pouring in.

My friends–I’m not sure I could do this without you. The community that we have built online keeps me tethered and buoyed both. So say what you will about the evils of social media–it is a source of enormous support for this single lady.

As is my amazing oncologist, Dr. Shaw. Per that radiology report–she never trusts the read, but rather studies the scans herself with a magnifying glass. I simply could not be in better hands.

And for those keeping track, I’m coming up fast on a couple of important milestones. In April I mark thirteen (!) years since diagnosis. My youngest, who was only seven when I learned I had lung cancer, is going to be twenty-one on April 20. That I should live thirteen years post diagnosis–long enough to see all three of my children into adulthood is, well, mind blowing.

As is the fact that I’ve had the opportunity to build a new life for myself. This extended period of stability has allowed me to focus on something aside from cancer, and I have thrown myself into travel, art, my vintage clothing business and online dating. I also took a rather extended break from blogging, but am gearing up to start sharing all (well, not all 😉 ) the juicy details. Stay tuned.

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

Couldn’t

I just missed World Lung Cancer Day. Well, not quite. I did spit out this tweet:

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For those who were able to post something inspirational, I have nothing but respect. But I just found myself unable to embrace the concept of a day devoted to lung cancer.

That’s because for those of us living with this disease, every single day is lung cancer day. And every single one of those days, we wish it wasn’t.

If we’re not dying, our friends are. This disease is a holocaust, a catastrophe, a fucking disaster. And although there is nothing wrong with ‘raising awareness’, we absolutely cannot stop there.

As important as it is to inspire, it is also necessary to incite. Complacency equals complicity, folks. And if we are going to inspire anything, it should be a sense of urgency. And raising awareness? Let’s put the money where our mouths are and raise funds; moneys for lung cancer research. How about devoting November to one giant bake sale? Or a virtual bake sale, with a go-fund campaign devoted to lung cancer. Let’s make our goal a million dollars. I mean, why not?

A cookie for a cure. Let’s do it.