Category Archives: Relationships

The weather in here

Posted on November 10, 2018 | 2 comments

Dark out here but there’s a light on somewhere

Sometimes when it rains it doesn’t just pour, it tsunamis.

Hell of a couple two weeks. Fortunately, weathering/withstanding is something I am very practiced at. The fact that I can do a three and one half minute plank is less about muscles and more about the ability to push past pain.

Life has been having its way with me again. Loss, progression and what feels like betrayal.

There is someone I love dearly. Have, from the moment I first set eyes on them. Longer, really.

Someone I would walk through fire for. Someone I would eat shit and die for. Someone who chose this week of all weeks to hurt me in a way that is beyond comprehension. Someone I must finally walk away from.

I had an abusive childhood. Certain aspects of my marriage as well. One might assume this has made me more sensitive to emotional pain. In reality, it has set my threshold higher. A useful trait, as it turns out. But it also means that I have to self monitor. Just like my neuropathic feet, it is necessary to keep a close eye on my heart.

At the moment, that organ’s a bit bruised, as is my liver. Too much of one thing has led to too much of another. Time to back off on that as well.

Last night I had an edible. My sons were both here and we were watching a horror movie when the power went out. Oddly, the little closet gallery across the hall from my loft was yet lit and we gathered there with our neighbors. It was a bit of a party atmosphere and I was having fun taking photos when I noticed that the wall was the only thing holding me up so I crept off to bed.

I love the way cannabis lets my mind simply unspool. It feels like a big brain massage as my thoughts do the leading and I simply follow. Once I was asleep my dreams were extraordinarily vivd and at one point I thought there was a man kneeling at the foot of my bed. He was in distress, arms flailing, and I realized he was struggling to breathe. I wasn’t sure if he was choking or if, like me, he had something deep in his lung that could not be dislodged. Nonetheless I leapt into action, (literally) as I began to pound the air/his back in my sleep. It was frightening but also a reminder that bystander is never my natural mode; I will always act. And if I’m drowning and you are too, I shall do my damnedest to save us both. However, if in doing so, you attempt to pull us both under, I will eventually make for shore alone.

Such is my will to survive.

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Posted in Relationships

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By its cover

Posted on January 8, 2016 | 9 comments

2016 began rather inauspiciously at a Great Gatsby themed New Year’s Ball. Held in a gorgeous old church, the night looked very promising. However the venue was poorly heat, the drinks insipid and the music far too loud. My grumpiness just made me feel old–not how I wanted to ring in a new year. We left a few minutes prior to midnight and when home I collapsed on the couch with my laptop. I intended to check a few emails before heading to bed but somehow got sucked into a site with before and after plastic surgery photos. Before too long I was looking at photos of Courtney Love. From bad to worse!

Fortunately I had some solid plans for the following day as I was preparing a meal for seven close friends. I’m still a little rusty when it comes to cooking and entertaining–my time management skills are way off–but I dove right in. When it comes to socializing, dinner parties are my absolute favorite. There is something about a table that is a great equalizer as conversation seems to both flow and include all.

I received a number of wonderful gifts that evening in addition to the company of dear friends. A beautiful centerpiece, a patron saint (never can get enough of those), the promise of some art (again, never enough). And a special gift from my friends Machiko and Koichiro; wrapped in indigo cloth. Tucked inside were two little wooden boxes filled with chocolate candy made by Machiko. Underneath that was another package which when opened revealed an onionskin envelope containing some mat board that had a little window cut in the center with a red tongue of paper attached–it reminded me of the advent calendars of my youth. Koichiro instructed me to open the little window and inside was a perfect, tiny platinum print of one his extraordinary photographs. I was so touched and shared with him that just the day before I had thought to myself that one day I would own a Koichiro Kurita (he is an amazing artist collected worldwide, with a photo in the Tate Museum in London). Now my year was looking up.

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This past week I made a point of engaging in all of the activities I wish to focus on in 2016. I roasted a chicken and later made soup; today I will bake some homemade granola. I walked, read, took and edited photos. I opened an instagram account–you can find me under linnoline. I ordered some canvas as I am all set to start painting again (yes!). I wrote (Click here for my latest post for CURE), made plans to get together with some of my lung cancer peeps, and began preparation for my next advocacy venture (DC in March with the American Lung Association). I participated in open studios with my vintage clothing shop–soon I will have an instagram account for that as well. On my to do list–yoga and maybe a gym membership–I’m not going to take this cancer thing lying down.

But back to covers–a highly anticipated book is about to be released–When Breath Becomes Air by Paul Kalanithi. Dr. Kalanithi was a young neurosurgeon with a gift for words who sadly contracted lung cancer. In the months after his diagnosis he devoted a great deal of time to working on his autobiography. After Paul passed away his wife Lucy, a physician as well, helped bring his book to completion. She also penned a poignant essay about love and grief for the New York Times that brought me to my knees. It is uncommon to have the perspective of patient and physician in one telling, and although I am certain it is going to be a really difficult book to read, I plan to do so.

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Posted in Living with lung cancer, Relationships

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The yellow brick road starts here…

Posted on November 15, 2013 | 12 comments
ups and downs

ups and downs

I don’t know what’s up with me and WordPress but I can’t seem to set up a gallery of photos and I’m too tired to fight about it. So, I’ll just figure out another way around this problem. Multiple posts! With, of course, the added benefit of making me look really productive in a publishing sense.

Truth is, there is much I’d like to share but little time in which to do it. My father Ollie used to say ‘three moves equals one fire’. There are all sorts of ways to interpret that apt observation (not originally his own). I think he may have been referring simply to the damage moving inflicts upon one’s belongings—that which is lost, broken, nicked and dinged.

I prefer to think of it in a more spiritual sense, and this time I’m definitely burning  down the house.

Of course, once the smoke has cleared and the ashes cooled, I’ll be sifting through the wreckage for what is salvageable. And then I will begin to build anew.

I’ve signed a one year lease on a work/live loft in an artist’s community in Lowell, Massachusetts. I will move in on December 1 and having a known destination has provided me with a solid sense of direction. I can now see a light at the end of the tunnel and (thanks Melinda) I’m fairly certain it isn’t a train.

The photo at the top is of some very colorful stairs leading to an amazing warren of artist’s studios located in the old mill adjacent to my future residence. Studios such as this one:

creativity abounds

creativity abounds

“Dorothy, I don’t think we’re in Kansas anymore’.

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Posted in Coping, Milestones, Relationships, Uncategorized

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As it turns out, not quite enough (of me)

Posted on October 14, 2013 | 40 comments

The word from the lab looking for the PD-1 protein in my biopsy is that there weren’t enough cells (cancerous or otherwise) for a thorough analysis. If it is determined that enough tissue was ‘banked’ after the biopsy, a sample will be resubmitted. Dr. Shaw is not particularly optimistic.

So, the plan for the moment is to watch and wait. We will rescan in November and as long as I don’t become significantly more symptomatic, my situation will be reassessed at that time. In lieu of a PD-1 antibody, I could potentially return to one of the ALK inhibitors which I previously benefitted from:  LDK378 or Crizotinib—although as the LDK is still in trial, I’m not sure how that would work. Chemo remains an option but given the slew of side effects, I would say it is the least attractive choice. What I’m really hoping is that I can hold out until the next ALK inhibitor comes to trial (rumored to be end of this year or beginning of next)—the timing could be just right for me.

In the meantime, my plate is plenty full. I’m looking for a place to live as well as a means of support. I realize that statement implies much and answers little; I’ve got a lot to process and when the time seems right, I will discuss this new chapter in my life.

40 Comments

Posted in ALK mutations, Biopsy, Clinical Trials, Relationships

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Liz and Berry

Posted on November 24, 2012 | 6 comments

Next up from my friends on INSPIRE are some observations about the impact lung cancer has had on their lives by Liz, wife to Berry. Liz notes that post diagnosis, she and Berry, who was diagnosed with non small cell lung cancer in July 0f 2012, have only grown closer as has their faith in God.

Our faith and relationship is stronger than ever. We have begun to realize that we each are ‘only’ human and accept each other for the person we are.

Some friends and family have fallen away; having to hear about cancer is unpleasant and a reminder that no one is invincible. Every couple will be separated by death at some point and we remind people of that fact.

For the 20 months that Berry was ‘stable’ people assumed he was ‘cured’ but WE have lived in 3 month increments from scan to scan waiting for the ‘other shoe to drop’ and praying it would not. It did. In August 2012 his scan showed progression of the main tumor and a very small ‘suspicious’ area in the other lung.

Now that he is back in treatment, we are once again the unpleasant reminder to some. But thankfully we have a few friends and family who have and will always be with us in this battle. We are more than blessed. We hope and pray our faith has inspired some to seek Him.

We have been blessed with many ‘good’ days and several trips to the ER. I am still on ‘high alert’ for any symptoms of the beast gaining ground.

We have lost friends to cancer. Friends we met during treatments, friends made online while sharing our struggles. Each and every one breaks your heart a little more.

We have grown older than our years and sometimes wiser!

The grandson we are raising is in 1st grade. The tooth fairy has come back to our house after a long retirement…our other grandchildren are blooming where they are planted. A constant source of pride and joy.

We have taken a few vacations, driven many miles, seen wonderful sights, caught a lot of fish, laughed a lot and cried many tears. Prayed hard and often.

We have learned that life can be bad but living is good.

Life should be lived one day at a time.

Appreciate what you have, it might not be there in the next breath.

Trust God.

Just breathe.

God bless us all,
liz

6 Comments

Posted in Advocacy, Death and dying, Relationships

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