Tag Archives: stage IV lung cancer

While sleeping

I just got back from a week in California, compliments of my friends Wendy and Cristina. More details and photos to follow. But first this.

On the fifth night I dreamt of a black and white woodpecker with wingtips burned to ash. The next morning I was having coffee with Wendy at the table when I looked out the window to where a bird was pulling suet from a feeder. It was a Hairy Woodpecker, just like the one in my dream.

On night six I had a dream that I was dancing. I felt like Shirley Temple in my full skirted dress; jumping and leaping and twirling about. Again and again people would stop to tell me what an amazing dancer I was.

In my waking state I am far from confident per my ability to dance; lack of coordination coupled with an inability to follow direction and a sense of rhythm that is best described as uniquely mine. I dance alone or in the company of alcohol or some other source of disinhibition.

To be able to dance like that in my dreams is almost as good as flying. Perhaps my wings have been singed (after all, I have been flying rather close to the sun) but who’s to say they are not yet airworthy.

Dream on.

xo

Oh Lorbrena

Like some fancy fantasy girlfriend, the drug formerly known as lorlatinib has been rebranded Lorbrena. And not a cheap date, Lorbrena. Check out these over the counter prices for a months supply:

However, even given her top shelf status, my Lorbrena is handed over in a brown paper bag to be carted home wino style. A brown paper bag that evidently blends into the surroundings so very well, I simply forgot it was there.

Yep. One whole week without taking my cancer meds. Blame it on stress; they sprayed my loft for bedbugs for the third time this week, on the same day I was getting surgery on four ingrown toenails that are an apparent side effect of hanging out with Lobrena all these years. And change; August and Lily moving out did a number on me. Then there’s memory; I just can’t. Remember. And it’s getting worse with time.

So there you have it. Gotta say, I enjoyed my little respite but starting up again resulted in a full on case of the runs and the shakes; just like our first date so very many years ago. And now, in order to keep this relationship on track, I need to begin (duh) setting an alarm to remind me to take my meds. That is, if I can remember to. Maybe I’ll even start filling out the daily diary (I usually do it in the office and when my nurse comes in, I sing a little song ‘making shit up, making shit up.’ Honestly. I am not non compliant for the sake of non compliance but those diaries are busy work. And, this being 2019, you might think we’d have a more sophisticated mechanism for capturing supposed data than a worksheet. I’m over it.

But the taking of the meds? I need to be on it.

Where your thoughts hang out

My daughter Jemesii was an amazingly precocious child. Highly verbal and given to preternatural wisdom. One day, at the ripe old age of maybe two, she said something that I shall never forget: ‘Dreams are where your thoughts go at night.’

Well yes, of course. Seemingly a simple observation but oh so much more.

Dreams are one of the reasons I love to sleep. When I am dreaming it is as if I have opened the door from one place to another. A magical place, strange and yet so familiar. From one self (waking) to another (sleeping).

Over the past two nights I’ve had a pair of dreams that seemed particularly powerful. In the first I am watching four elk graze when they turn and start moving toward me. Then I see the tiger. And then the tiger sees me. I begin to run and the only shelter is a screened in porch. I get there just before the tiger and quickly latch the door. To my surprise and great relief, the tiger simply regards me through the flimsy wood frame and wire mesh and then turns to go. I think to myself that sometimes a simple barrier is enough to protect oneself from danger. But there is more. Because this barrier is transparent, I can still see the tiger. Now he is far below and menacing a group of people gathered on the beach. They do the oddest thing (or perhaps it is the only thing to do, although I think I would have jumped into the water). They simply turn their backs to the tiger and of course this does nothing to stop him from attacking.

In the second dream I am standing in a series of lines, waiting to get into a cafeteria. At one point a number of us sit together on a wall and I share the fact that the previous night I had been very stoned while looking at the night sky. And that I had been able to hear the throb and hum of the universe. This is met with silence but an Indian man, who is also some sort of teacher, approaches me later and says ‘Absolutely. It is all moving, all the time, and that is what you heard. I too have felt it.’ The subtle (or not so subtle) wind of existence. Life. Energy. It. Us. Connected.

Where my thoughts go during the day: a captured moment.

Perfect alignment

The first thing I saw upon opening my eyes today was the planet Mars. Cold little fire in the early morning sky.

‘Hey Mars’, I said. ‘Save me.’ To which Mars calmly replied: ‘I got nothing.’

Honestly, I was somewhat taken aback. But as I stared across the millions of miles of space, I saw not Mars but the light of the Sun, reflected. And I thought about the other side of this star-like planet, now sheathed in darkness. A jet passed high above. I pictured the passengers inside, people on their way somewhere. So far and yet so close as well.

A bird flew past the window; fast. And then some more, buffeted by the breeze. Mars was growing dimmer, and I had to concentrate to keep it in focus. Two more jets, their contrails now lit by the rising Sun. Seagulls, playfully riding the thermals.

All this I could see. Yet the air was also filled with microorganisms, invisible to the eye but very much part of this marvelous froth of life. I felt this overwhelming connection to everything and nothing, as nothing was actually something. And I understood with a clarity that felt like pure joy that even when I was no longer me, life would go on.

At last glance, the bright planet was obscured by daylight. Far, far away. There, but not there.

Thanks for nothing Mars 😉

Threading the needle

So. For me, this, right now, is the most difficult part of dealing with my own cancer. The mind fuckery of waiting. 

My friend Tom Monks replied to a previous blog with a comment that could be a little Haiku poem:

Waiting for results
Waiting anxiously
Waiting patiently
Waiting ……..

Yes. As I remarked to Tom, waiting is such a part of this journey they even have designated spaces for it: waiting rooms.

Unfortunately there is no such space in your head. Bills come due, plans are made, the Holidays happen with or without you. 

It is such an exquisite balancing act. Talking down the fear, the angst, the worry. Staying positive in the face of a level of uncertainty that is, at times, almost incomprehensible. Making myself walk and go to the gym regardless of the fact that I already feel a physical diminishment. Rather, going explicitly because I do. 

Getting my warrior on even as I look around me with ever greater tenderness; I love this freaking world. Readying myself to battle an enemy who I am familiar with in a way that borders on contempt, and yet still at a loss as to how to go about it.

Trying to be at peace while simultaneously preparing to wage war. 

Threading the needle.

xo

Where do we go from here

inked

Prior to my biopsy, this mystery mark was made on my left shoulder. Not certain as to the significance, but hopefully it aided them in getting the right (make that left) side of me.

Aside from that, I am left with two tiny entry points high on my left breast as well as parallel tracks on my left cheek—a red mark from lying face down on top of the oxygen tubes for more than four hours.

Unlike my previous biopsies (there is a benefit to scar tissue), my lung did not partially collapse this time. Diane was able to take me back home with her with the caution that I was to have no alcohol. Therefore, I only had a small glass of wine that evening 😉

What I know thus far is that they were able to get adequate tissue, including a sample for the sponsor of my trial (a token of appreciation). Over the next four weeks, results of genetic testing should start trickling in. This is the watch and wait part of cancer.

Alice called me yesterday (as well as once the night of the biopsy and she also came to see me twice on the day of—goddess that she is). This was a CT assisted biopsy and the surgeon/radiologist who performed the procedure is  also the radiologist who reads my scans, so he is extraordinarily familiar with my body/cancer. He told Alice that the tumor around my heart (which they did not biopsy–too proximal) has grown very little and that the tissue that they did sample–along the chest wall–is growing rather slowly. She feels radiation may be an option there but not for the cancer hugging my heart. 

Aside from that, there is nothing concrete to discuss yet. I am optimistic, she is cautiously so. 

It really is pull the rabbit out of the hat time. And as important as the magician (Alice) is, I am focused on that rabbit.

Nice-ness

So life might be bonking me on the head a tad but there’s some mighty fine shit going on as well.

Take my birthday. Child number two, my son August, took his mama to dinner. Sushi boat and Mai Tais. Yummy yummy ice cream. Paid for by my spawn (a term of endearment in our family). Really quite special and a rite of passage for us both.

Aug and Aug’s mom Linnea

And then there’s the Advair situation. My friend Lynda mailed me an inhaler pronto with the promise of another to follow and a whole bunch of other folks offered to send some as well. However, just the other day I received a package from another friend, Ginny, with six of those puppies inside so I am all set. 

She who prefers not to be named (but thank you) set me up with a massage which I’m going to be taking advantage of in the next couple of days and I am STOKED. I’m the sort of person who likes to go to the dentist because it means someone is touching me and there’s been all too little of that going on as of late. If you know what I mean 😉

Got a guardian angel out there as well—who out of discretion will remain unnamed but he’s friends with some of you as well. Several months ago he just went and made a large deposit in my paypal account. A loan to be paid back when I am able. Unbelievably kind, generous, and knowing. Asking for assistance is not easy for me and frankly the only way this could have happened is the way he chose to do it.

I’ve also got some other loose ends to tie up getting rid of my vintage clothing and replacing the floor in my little airstream. Local friends have offered to help me with both. 

A neighbor paid the fee for my key to be replaced when I lost those. Another friend (girlfriend of a friend but now my friend too 😉 ) is keeping me on track with my book. She is just what the doctor ordered—sassy, smart, incredibly organized. Exactly the sort of task master I am in desperate need of.

And of course I have received many, many messages of support and encouragement.

So, as you can see, I am RICH in friends. Almost obscenely wealthy. And there is no form of plenty I would rather have.