Monthly Archives: December 2018

Sleeping around

I spent the bulk of the past two days prepping my loft for the exterminator that is due on Monday. And I should add that when first alerted to the bedbug issue next door some weeks ago, I both explained that I was physically unable to move all that was required and also quite concerned about exposure to pesticide (I mean, I do have lung cancer).

Well, my protests went unheeded. Today I asked for a little insight as to what to expect after Monday and was told that this would be the first of three treatments occurring every 10-14 days.

Not what I signed on for. I then sent this message to my landlord:

 I have now spent two full days shifting my loft (alone). Two brutal days even though I am also struggling with my lung cancer now. In its current state my living space is not habitable. From everything I have learned if you’d gone with the high heat method I wouldn’t have had to have moved anything, it would have been more likely to be effective, and I would not have been exposed to pesticides. 
In my five years here I have dealt with black mold, a nonfunctioning air conditioner during a heat wave, leaks (yet unresolved) and now this. I listen to a dehumidifier all day long and now a bed bug trap all night long. 
I have never asked for nor been offered a break on rent. I must now put my foot down as there is no way to justify $1850 a month to live in these conditions. 

No response, which has been the status quo.

So. I won’t be paying rent until this is resolved. Wish me luck. And, as my loft is in total disarray and will also be sprayed with pesticides not once but three times, I am simply going to find someplace else to stay.

Local? Looking for a house guest for a day or too? I am going to try to farm Kumo out to someone here in the lofts so I will be traveling lite. Hit me up if you’d like a sleepover 😉

xo

Oh shit.

Really.

Believe it or not I harbored this little teeny tiny hope that my biopsy results would come back negative for cancer. That they would be positive for infection or some sort of mold or tuberculosis or aspirated noodle.

Hope is a glorious untamed thing that lives outside the boundaries of reason.

Reality is a bossy bitch that likes to play by the rules and this morning she told it to me straight.

INTERPRETATION:
POSITIVE FOR MALIGNANT CELLS.

Alright. Fair enough. I could dream but hey, this was the not-just-likely but assured outcome. However, the next part caught me up short as my histology has progressed as well: adenocarcinoma with acinar and micropapillary patterns and mucin.

That’s all I know thus far and it is information gleaned from Patient Gateway without the benefit of my dear oncologist’s insight. Therefore, I shall refrain from interpretation until we have had the chance to discuss.

Well, I had just finished reading the path report (followed, of course, by a little bit of panic inducing googling) when I opened an email from my landlord. There has been a bedbug situation in our building and the current ground zero is right next door. When first apprised of this state of affairs I was assured that exterminating my loft was an option but only if I was able to prep it first. Prepping included moving all furniture two feet from walls, washing all clothing/fabric items, removing all hanging pictures. Etc…etc…

This news put me into a bit of a tizzy. I have way too many books, lots of art, heavy antique furniture (I now feel anything bigger than a breadbox should be on wheels) and…my vintage clothing stock. In other words, NFW. So, instead, we installed a bedbug monitor/trap at the head of my bed. Once it gets dark, this little carbon dioxide operated monstrosity makes a loud clunk and flashes a red light every couple seconds. All night long.

Now I honestly believe I have PTSD associated with the 42 brain MRI’s that I’ve undergone. Any sort of loud, repetitive percussive noise sets me HIGHLY on edge. And when it’s right next to my head while I’m supposed to be sleeping? It’s been a rough couple of weeks.

However. The good news is no bed bugs have been caught and I have not lost my mind. The bad news is that the unit next to me is being exterminated again and my landlord feels it would be prudent to also treat my abutting wall. A wall that runs the length of my loft. A wall that has all my bookcases on it as well as a massive antique hutch chock full of stuff.

I don’t even know what to say. But I better get busy.

Solstice

today
I will count the spiders in the window
take a walk in the morning
and a nap right after
little white dog beside me
the sun in my lap
yellow blanket wrapped tight

around

today I will listen
to the sound in my chest and
think it
far off thunder;
but also understand
that a storm is coming

today

I will get out
the good
china

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.

To you, dear cancer

*thank you http://www.bigwheelpress.com

In which I express my sentiments in the clearest language possible.

Yep. Had I my druthers, this relationship would be over. You, evicted; kicked to the curb. And then kicked yet again, hard. One big take that, you creep. 

Tenant from hell, you are. Sneaky, freeloading, destructive little shit. Totally without consideration for your host. Seemingly intent upon destroying the only home you’ve ever had.

Thing is, you underestimated me. 

Once upon a time I was both hesitant and more accommodating. No longer. Our incessant discord has remade me. In order to survive I have become fearless, fierce, ferocious. In this perverse game of chicken, I shall not swerve. And if I cannot shake you, I’ll take you with me.

That’s not a threat, it’s a promise. 

love, Linnea

Going in

So tomorrow is the big day; my fifth needle core biopsy.

Rather like a space probe, the purpose of this procedure is to look closer; to learn more about the nature of my cancer so that we may make informed treatment decisions. 

My very first biopsy was the most memorable. Four days earlier I had heard the word neoplasm for the first time. In the days hence, I had read up on lung cancer. The statistics were dismal but my differential diagnosis had left room for other conclusions–a recalcitrant pneumonia or a fungal infection.

When they wheeled me to the biopsy room, the patient before me was a prisoner; cuffed and accompanied by two officers. The physician who performed the procedure first marked the point of entry with a black dot–a dark star of a tattoo. As he guided the needle between my ribs he studied the image on the CT scanner and remarked ‘I am almost certain this is a fungal infection. There is no way a young non smoking woman such as yourself could have lung cancer.’

Post biopsy I was to lie still without speaking for several hours. This was made more difficult by the fact that one of the attendants recognized me–she had been a clerk in a store I patronized–and she, apparently unaware of my restriction, kept trying to engage me in conversation.

The next morning my world turned upside down, when I learned that the radiologist was so very mistaken. Young, non smoking women such as myself could get lung cancer.

My next biopsy was almost three years later. It confirmed metastatic spread and I, a IB at diagnosis, was restaged to IV. However, we would also learn that I was positive for an EMLK 4-ALK fusion gene; ALK+. Four months later I went from having no options to enrollment in my first phase I clinical trial, for crizotinib.

Three years later, prior to enrolling in a phase I trial for ceritinib, I was biopsied yet again, in order to better understand my mechanisms of resistance to crizotinib. An acquired secondary mutation, S1206Y, was identified.

After progressing on ceritinib, I had yet another biopsy. The hope was that I would be positive for PD-L1, making me eligible as an early participant in a clinical trial for immune checkpoint inhibitors. Disappointingly, I was not, however it was revealed that I had now acquired yet another secondary mutation, G1202R. This particular mutation was more problematic than S1206Y, as it conferred resistance to all available ALK inhibitors and it was at this point that I returned to chemotherapy, carboplatin and pemetrexed, until lorlatinib (which shows efficacy against G1202R) became available in trial. Some of the tissue from my biopsy was used to attempt to start a cell line as well as build a mouse model of my cancer, but neither proved successful.

So, here I am, once again at a crossroads and seeking direction. Tonight I will sleep at my friend Diane’s house and in the morning she will drive me to MGH. I look forward to the anesthesia (yeah, I’m kind of a sensory freak and I’m not gonna lie, I like going under 😉 ) but I dread the part where you wake up with a dry mouth and then have to lie there unmoving/not speaking. If the biopsy is uneventful, I will go back home with Diane. However, every other time I have suffered a partial pneumothorax (collapsed lung)–a ticket to one night’s stay in the big house.

It is what it is. I am a traveller who’s had a long run on a clear stretch of road; for that, I am exceptionally grateful. Now it’s time to get my bearings and to figure out the best path forward.

xo