Monthly Archives: June 2021


My niece Brandi kindly brought this to my attention: two different instagram accounts are pretending to have a relationship with me in order to shill t-shirts. Like I have time for a stolen identity right now.

Brandi reported both accounts to Instagram but they were not removed. I have reported them to Instagram as well. In the meantime, these are the fraudulent accounts which are pretending to have some connection to me. I have no association whatsoever with this scam and am appalled that someone would traffic on a cancer diagnosis. And, for all I know, there are more out there. Not me’s.

Johnny up and biopsy is a go



INDICATION: Metastatic lung cancer

Consent: The nature of the procedure, including its risks, benefits and alternatives was explained to the patient who understood and gave consent.


The patient was placed prone on the CT table. Targeted preprocedure CT images demonstrated a dominant left lower lung mass, not significantly changed compared to chest CT from 5/23/2021. This was identified as the biopsy target.

After identifying a direct path to the target, the overlying skin was prepped and draped in the usual sterile fashion. A “time-out” was performed prior to initiation of the procedure to reconfirm the patient’s name, date of birth, and site of procedure. 15 cc of 1% lidocaine were administered for local anesthesia.

Using CT guidance, a 19-gauge introducer needle was percutaneously placed in the target using posterior approach. The stylet was exchanged for a 22-gauge Chiba needle and aspirates were obtained for slides. Additional fine needle aspirates were collected in a vial filled with normal saline. Subsequently, multiple tissue cores were obtained using a 20-gauge spring-loaded device. Tissue samples were handed to the cytopathology technologist and research assistant.

Post procedure images demonstrated no significant hemorrhage or pneumothorax.

ANESTHESIA: Intravenous conscious sedation was administered by radiology nursing. Continuous hemodynamic and respiratory monitoring was performed, including the use of pulse oximetry.



Medications: As per medication administration record

CONDITION/COMPLICATIONS: The patient was brought to the radiology recovery room. Post procedure chest radiographs were obtained one hour and three hours after the procedure.

DISPOSITION: Oral and written post-procedure instructions were given.


Needle aspiration and core biopsy of left lung mass without immediate complications.

TNO155 and lorlatinib

I posted this on Facebook yesterday: How to explain that you feel extraordinarily fortunate (6th phase I clinical trial) while also feeling incredibly fucked (6th phase I clinical trial). There are no words.

But I shall make an attempt. First, a description of NCT04292119 from My Cancer Genome.

Secondly, the transcript of an interview (conducted by ALK Positive, who also provided funding for this research study) with my oncologist Dr. Jessica Lin as well as Dr. Ibiayi Dagogo-Jack–the Principal Investigator for this trial.

Not gonna lie, my chill facade crumbled yesterday as my anxiety went through the roof. I had labs–‘skidding into scar tissue’ was the explanation the phlebotomist gave as she poked me for the second time, and a brain MRI, and as I lay in the scanner I had to laugh (so as not to cry). There is little less soothing to frazzled nerves than the percussive cacophony of a brain MRI.

I’m feeling a little calmer again today. And super hopeful that the fact I responded to MEK inhibition combined with lorlatinib may make me more likely to also respond to SHP2 inhibition.

What I’m not looking forward to are the side effects.

C’est la vie.

I am absolutely clear as to what my goals are. As evidenced by a text discussion with Alice per the possibility of removal of what’s left of my left lung (an avenue I am also exploring). Neither of my oncologists are fans, and as Alice explained, she was concerned both about my ability to tolerate a pneumonectomy as well as the negative impact on both short and long term quality of life. My response? ‘Yes–understood. But I am also facing death–impossible to recover from. No reported QOL.’

La vie. Mine. Which I am enormously attached to. And therefore will do almost anything to hang onto.


That’s my optic nerve—left and right eye.

So, I’ve been busy jumping through hoops. Consent form signed. Labs taken. EKG and ECHOcardiogram performed. Eyes examined–that was a big if–but my retinas look good. All that is left is a brain MRI–which should not pose any issues.

A week from today I shall have my biopsy. The following day, I am to start the trial for Lorlatinib in combination with TNO155–a SHP2 inhibitor.

Had I not been to this particular rodeo so many times before I might be anxious. Or maybe a little bit excited. I am neither. What I am is tired. But also hopeful.

Always hopeful.