Tag Archives: stage IV lung cancer

For all you tough mothers out there

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Happy Day; this one’s ours.

Like all holidays, it feels a bit bittersweet. A reminder of good times but also bad.

Four years ago I took my first dose of lorlatinib (image from that momentous occasion shown above). Several days later I started coughing up specks of blood. By the morning of day six, my hemoptysis was significant enough that Dr. Shaw asked me to come to MGH for an emergency CT scan just to rule out a pulmonary embolism.

As I was getting ready to go to the hospital, a call came in from Utah, where my mother and stepfather lived. It wasn’t yet daybreak there so I knew something must be wrong. My stepfather was on the other end of the line and he began to cry as he told me that my mother, Evalynn, had passed away in the night.

Mom, gone.

I fought back tears and panic both as I drove the hour into Boston. My daughter met me at the hospital and when the tech emerged post scan I jokingly asked ‘so is my cancer all gone?’ No, but almost. And the blood? Likely a result of rapid tumor necrosis.

And then my heart broke because the person I wanted to call first was no longer here.

However, grief was side by side with joy: I was going to have more time to spend with my three children; Jemesii, August and Peter. Being a mom is the one thing that keeps me going no matter what—my raison d’ĂŞtre.

In three weeks one of my (now adult) children will be moving back in with me. The reality is, he still needs his mother. And I am absolutely thrilled that I have the privilege of being here. For him. For me. For life.

THIRTEEN BOFFO YEARS AND COUNTING

Damn. I’ve been so busy living (!) that the thirteenth anniversary since my diagnosis with lung cancer–on 4/5/05–just whizzed right on by.

Totally unnoticed.

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Lucky Thirteen

And really, that’s how it should be. It’s the journey that counts, right? And I am enjoying one hell of a scenic ride. Art, advocacy, a little bit of loving (more on that later–wink, wink). Up to my neck in the wonderful details of this one and only life that I call mine.

Which is not to say I’m taking anything for granted. No, far from it. I still begin my days with ‘I’m alive, I’m alive, I’m alive.’ And now I am apt to add in “I’m in love, I’m in love, I’m in love.’

I think it is no coincidence that live and love are separated by only one letter. In fact, i directly precedes o both in the list of vowels and on my key board. I am wont to sign my personal missives ‘love, Linnea’ but quite often I hit the wrong key and instead type ‘live, Linnea’.

I am also delighted by the fact that my personal goddess/oncologist Dr. Shaw is named Alice. C directly precedes v on the keyboard and once again, It is not uncommon for me to type Alive rather than Alice.

It’s all so nice. As is being both alive and in love (with life) thirteen years post diagnosis–at least a decade longer than I or my oncologist once thought possible.

Thank you innovative medical research. And keep up the good work. I’ve got plans; big plans.

live, love, Linnea

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

 

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 🙂