At times, it’s been more than a little touch and go.
Although I couldn’t possibly relay the whole sordid tale, I shall attempt to hit some high and low spots.
TPX0131 and I had a brief and tempestuous relationship. Six days in I would have said no side effects.
And then the shit hit the fan big time. Initially I was admitted to the ER for a lingering pneumonia (fevers–serious ones–of unknown origin.) They did what they could for me (IV antibiotics) and then I was released briefly (and if any of my handlers/editors notice any errors–please let me know. I am not entirely sure this visit was post trial onset).
I also know that I was next admitted with mental confusion. And at this point it all goes dark. Later I would realize that I was often hallucinating. All in all a month + in the hospital (lots to relay regarding that) and then two weeks in rehab.
It was hell; all of it. The current conclusion is that I suffered a severe neural injury. Tripping x 1000 (my assessment). And it took more than a month to start coming down.
The entire experience was terrifying. I am back home now trying to relearn simple things, such as typing and walking. My group of friends and family have been amazingly supportive.
I have also been very appreciate of messages, flowers, and food sent my way.
Now I must rest but I shall try to check in more frequently.
Last we spoke I was post thoracentesis and home with a Z-pack. I had that thora on a Friday and by Monday I was running a fever and experiencing chills. Jess wanted me to go to the ER but I resisted. We made a deal that if my temperature rose, in I would go. When it hit 101 that evening I relented. Per Jess’s instructions, I was not to drive myself
Well, my fabulous landlords rose to the occasion and ferried me to MGH—complete with a blanket and a hot water bottle. They also offered to take care of Kumo–for what would turn out to be an extended stay.
The ER. First they took my temp with one of those little wand-y things, which said I had no fever. It would take another 36 hours for someone to stick a digital thermometer in my mouth and for all to realize that I still had a fever of 101+. If you have a wand-y thing (they screen for COVID with those), throw it out. Piece of shit.
As an oncology patient, I was paid a certain degree of deference. Which meant my own private glass cubicle. But I, like everyone else, had a gurney and no pillow.
Going to the bathroom was a trip. The further you went down the hall, the more it resembled skid row, with gurneys lining the halls (addicts, drunks, psych evals) and people sitting in chairs like hall monitors. Which they essentially were.
‘It would be my unfortune (not a word, but let’s make it one) to spend almost 24 hours in that ER. The nursing staff was exemplary. But the slice of humanity—it’s hard y’all. I saw some guy’s junk (I was on the phone with my friend Annie who said ‘don’t tell a lesbian that!). I was bombarded by bells. Some woman came in screaming ‘don’t you shoot me with that fucking epipen–you killed my kid, I’m going to sue you all’ and so on. Ten minutes later she was quiet and when my nurse came in I commented on that fact. ‘She had some help’ he said. ‘And that’s what she was screaming about’ I replied to which he responded ‘And that’s what happens when you spit on somebody.’
Another of my fellows came in with a police escort of at least seven officers. A big city emergency room is, quite simply, a portal to hell.
When I was admitted, it was to a room with a roommate. In short, a hospital is no place to heal.
However, my situation was such that I needed to be stabilized. A complex cocktail of intravenous antibiotics. A second thoracentesis. Discussion as to the fact that if my fever did not abate, we might need to attribute it to my cancer—which remained so obscured by pneumonia and the pleural effusion—it could not be assessed.
It was a scary time. A time of difficult possibilities and discussion around whether or not these were in fact probabilities.
And of course, the demands of life continued. I needed to vacate my studio. Stat. And now physically impossible. I called Annie–said I needed a project manager. She—without hesitation—agreed. I then sent out an email to some of my closest friends and my youngest son. While I was in hospital, Annie drove two hours to my house, got the key to my apartment from my landlord, and then met my friend Marc at my studio to start packing. The next day they were joined by Brian, Chi and Susan.
My son Peter had the task of bringing me home from the hospital on Saturday, but on Sunday he joined those assembled. And this marvelous crew both packed up and moved most of the contents of my studio. Unflipping believable.
Of course, there were other matters to attend to. Melinda and Diane tag teamed. Once I was released, Melinda and our friend Amy came to my house to cook but also to help me tie up some important loose ends. My will. ( a visit to the notary). Taxes paid. A spread sheet created for my bills and passwords. Power of attorney to Melinda–as well as giving her access to my bank accounts. And then Melinda went above and beyond–looping in with my financial advisor to help me manage assets.
There are still things to attend to. Copies of keys, arrangements as to how I’d prefer to die and where my body shall go (research) once I do.
Sobering. This head on confrontation with mortality. But also incredibly comforting–wrapping things up. Of course, I still hope this is all a little premature. However, my eyes are wide open. Stage IV lung cancer, a massive pleural effusion and pneumonia are all indicators of a body that is struggling. Tomorrow I have another chest CT and will meet with Jess. It is likely my left lung will be drained again and possible that a PleurX catheter will have to be installed. Once it’s a tad drier in there, we can figure out what’s been going on with my cancer. And make some choices as to how to move forward.
I had a scan on Sunday and the report was just posted. From a personal perspective, I would have to say it is not good news. Rather aggressive growth over a two month period.
I am not surprised. My body and I have a rather tacit understanding. And what I have been hearing has been progression.
On Thursday I shall meet with both Jessica Lin and Alice Shaw. We shall go over the scans but also discuss the possibility of a biopsy–something I am requesting. The hackathon has been going strong and several offers have come in for further genetic testing and maybe even an attempt at creating a mouse model–if tissue is available.
As my tumor burden has increased somewhat significantly, I would say the answer is probably yes. However there is still the question of location, location–is it accessible.
Thursday can’t come fast enough as I shall feel more comfortable with some answers as to what direction we will be heading. The one thing I can say with assurance is onward. This party’s not over.
CT Chest – Details
TECHNIQUE: Diagnostic CT CHEST WITH CONTRAST
COMPARISON: Prior exams, most recently a chest CT from 3/5/2021.
Lungs and Airways: There is biapical pleural scarring with increase in the adjacent pleural fluid at the left lung apex. Again demonstrated are postoperative changes status post left lower lobectomy. Within the inferior aspect of the left upper lobe there is parenchymal consolidation which has increased from prior. Inferiorly and anteriorly, consolidation measures approximately 8.2 x 5.1 cm on image 364 series 4, increased from 4.2 x 5.1 cm as measured in the same fashion on chest CT from 3/5/2021. This consolidation extends anteriorly and inferiorly with increase in the subpleural nodularity which now measures 41 mm in length as on image 303 of series 4, previously approximately 37 mm with increase in the adjacent consolidation and groundglass opacity. There is increasing consolidation which extends inferiorly as well, now measuring approximately 5.9 x 4.9 cm in image 4 4 of series 4, increased from 2.9 x 2.0 cm as measured at the same level on prior exam. There is intralobular septal thickening as in image 360 of series 4 which lymphangitic spread of tumor cannot be excluded. There is increase in the adjacent loculated left pleural fluid. A right upper lobe pulmonary nodule measures 6 mm on image 251 of series 4, not significantly changed when compared back to at least 1/5/2021. There is adjacent reticular opacity consistent with scarring. Mild nodularity along the right minor fissure measuring up to 5 mm on image 268 of series 4 is stable when compared to 1/5/2021 and likely represents a fissural lymph node. Other small nodules along the right major fissure are stable. There is a 3 mm nodule in the right upper lobe on image 148 of series 4, stable back to 1/5/2021. No new or enlarging right-sided nodules are seen. There is reticular opacity in the right lower lobe with associated subpleural bands, stable from prior and likely due to atelectasis/scarring. The central airways remain patent.
Pleura: There is a small left pleural effusion with loculation which has increased at the left lung apex. Left basilar loculated pleural fluid has also mildly increased when compared to 3/5/2021. There is no right pleural effusion. There is no pneumothorax.
1. Status post left lower lobectomy with continued increase in consolidation within the inferior left upper lobe when compared to 3/5/2021 highly suspicious for progression of known malignancy. There is adjacent interlobular septal thickening for which lymphangitic spread of tumor cannot be excluded.
2. Mild increase in volume of loculated left pleural fluid superiorly and inferiorly when compared to 3/5/2021.
3. No significant change in scattered right pulmonary nodules measuring up to 6 mm. No new or enlarging right-sided nodules are seen.
Yesterday was Rare Disease Day. Now y’all know how I feel about days. However, this year this one caught my attention.
The definition of a rare disease in the US is one that affects 200,000 people or less. Approximately 12,000 people are diagnosed with ALK+ lung cancer annually. However, given the amount of time ALK+ has been a thing (since late 2007) as well as our still high mortality rate, we are a rare disease.
Let me tell you about when I found out I had ALK+ NSCLC. It was August of 2008. And to the best of my knowledge, only three other people had been identified as ALK mutants.
Lonely does not begin to describe how it felt. However, I also experienced hopefulness–I was, after all, a dying woman who had suddenly been thrown a crumb (a mutation–targetable–with a phase I clinical trial at my very hospital). Gratitude, as well, that a big ass pharmaceutical company like Pfizer would have taken on such a rare disease.
By the time I was diagnosed with ALK+ lung cancer, the first of my kind would have passed away. I never even knew his name. However, numbers two and three would become fast friends of mine. Unfortunately, number three, Kevin Brumett, passed away in the spring of 2009. However, number four, Sarah Broom, and I had the time to develop a very close friendship. Sadly, Sarah passed in 2013.
By now, thousands of people have been diagnosed with ALK+ lung cancer. We have become a large, extended family.
I am, I must suppose, the longest surviving ALK mutant. However, so very much has changed since 2008.
There continue to be new treatments, attested to by the fact that I am currently enrolled in my fifth clinical trial (Alice corrected me last week–lorlatinib plus chemo was not a trial. I apologize for exaggerating my credentials 😉 ) And my ALK family is one to be flipping proud of. The energy they have for support, raising awareness, and generating funds for research is incredibly humbling.
In the lingo of cancer, unexceptional is a good thing. However, in another sense, everyone I have met on this path is truly exceptional. In the best of all possible ways.
That ugly image of the open wound is my thumb. It is but one of the nine cuts that currently reside on my fingers. No amount of topical steroids, bag balm or liquid skin will make them go away.
I am also dealing with pustular acne. At the moment, maybe nine little spots. I am given to understand that it can get a lot worse.
One is supposed to leave this sort of thing alone. However, I dare you to simply walk around with a pus-filled little (thank god for little) lesion on your face. No, my ego is sound but not that sound. Anything with the word pus in it must go.
Fortunately the topical antibiotic seems to help. Help is nice but I’m shooting for eradication.
I share this with you (TMI, I know) because, once again, I feel it is important to stress, illustrate, underscore the hoops that those of us with cancer will jump through just to stay alive.
Yeah, I am thrilled about that 57% response. Beats no response or progression all to hell. However, side effects that include spontaneously splitting finger tips and acne of the pustular variety are their own special form of devil’s stew.
So ye who are naturally resplendent in health, rejoice. And regard, with both compassion and respect, your fellows who endeavor to become healthy through unnatural means.
What you are looking at are my before and after scans. Evidently I was mistaken about any previous scans after starting the trial–this is my first one. Out the door goes the fever theory (maybe–I kinda like the image of the cancer being incinerated). At any rate, as I am on my back while in the scanner, that is my left upper lobe on the right side of each individual image, and my right on the left. And the scan on the left is the most recent one.
This represents, according to RECIST, a 57% response. If you look closely, there was a whole wad of schmutz on the bottom of my left lobe which has just about disappeared. And the greatest area of consolidation, on the upper right of that lobe, is much less diffuse; some adjacent tumor smaller. There was also some activity beginning on the bottom of my right lobe which is no longer discernible. Without question there’s more unimpeded volume/room for air to circulate–ie: breathe.
Just call me a happy camper. Next on the agenda? I want to boost that response to 70%. And then I plan on sustaining it.
My new therapy, or rather combination of therapies, has afforded me more energy. I suspect it is the lorlatinib.
This has felt wonderful. I’ve taken advantage of the amped up feeling to get some major projects done. Long (and rather sad) story short, the vintage clothing business in its current incarnation is kaput. The combination of a pandemic and some major miscommunication between partners and we are no more. Circumstances willing, it shall rise again as a small, manageable, online version. But first things first.
I had to relocate the stock and furnishings, first to one storage unit and then a major downsize to a smaller one. I figure it’s as if I’ve stacked several cords of wood at this point.
There was also an old wooden shelf–heavy as hell–that I wanted to take to my studio. My friend Brian helped me load it into the back of my 4-runner. However, I got that puppy out and up to my studio by myself. My deceased mother (the queen of do it yourself) would have been proud. It was a classic combination of brain and brawn, as I employed physics (tipping and spinning across the parking lot) as well as brute strength (shoving it down the long hall).
My back is pissed as hell right now but there is something oh so satisfying about hard, physical labor.
Of course I wish I could tell you that this surfeit of energy was a positive indicator per the effectiveness of my current therapy.
Not. It is, I am afraid, merely a smoke screen. My shoulder feels better (go figure, after all the lifting) but my lungs sound like shit. When I lie down at night the audible wheeze is often enough to waken me from a deep sleep. A strange sort of bubbling going on as well.
Gross, I know. Even more so if it’s your body. And, fucking A, it means the cancer is just perking along. My big plans and hopes and dreams be damned.
So there you have it. In as plain a language as possible. I am alive but, well, not well. Still strong enough to fight but I’m going to need some more effective tools if I hope to gain some ground here.
I had my scan a week ago and Dr. Lin called me the following day with her impression–Alice followed up on Saturday.
One of the most difficult aspects of being an oncologist is trying to keep both body and hope alive for patients. Jess (Dr. Lin) and Alice both felt the the subpleural opacity in my left upper lobe was possibly less dense than previous scans–‘more aerosolized’ is the way Alice put it. Maybe whatever the heck that is (never definitely labeled cancer) is partially resolving, and therefore accounting for the improvement in my breathing. It would be nice to think so.
I did not receive the official read of the scan until today and I must say, it is lackluster; said with all due euphemism.
Keeping body and soul together is getting to be more difficult for me as well. Neither of the last two treatments would appear to be a panacea. And social isolation is sapping me of my usual reserve of joy. These times were not made for extroverts.
Now my job is to just hold it all together in what sometimes feels like impossible circumstances—if I can avoid getting COVID-19 and keep this cancer from moving from a brush fire to burn the whole goddamn house down, well then I might be around when another treatment becomes available.
My general MO is to overcome and forge ahead—if you told me I had to walk 100 miles today I would be game to try. Laying low is an entirely different animal and I’m not gonna lie, one heck of a reach for me. But I am going to do my darnedest to hang in.
TECHNIQUE: Diagnostic CT CHEST WITH CONTRAST COMPARISON: Chest CT dating back to 1/18/2019 FINDINGS:Lines/tubes: None. Lungs and Airways: Status post left lower lobectomy. The central airways are patent. There are new groundglass and tree-in-bud nodules in the anterior right upper lobe for example on images 49-51. There are also multiple enlarging subsolid nodules in the right upper lobe for example image 49 nodule measures up to 8 mm compared to 5 mm prior. Multiple nodules in the left upper lobe has also increased in size and attenuation compared to recent prior, for example spiculated nodule in the right upper lobe on image 53, measuring up to 10 mm compared to 9 mm prior, image 44 nodule now measuring 4 mm compared to 2 mm prior, and subpleural nodule on image 43 measuring up to 8 mm compared to 7 mm prior. The dominant subpleural consolidative opacity along the lateral left upper lobe is essentially unchanged compared to recent prior now measuring 17 x 29 mm (image 64). The confluent consolidative opacity at the left lung base is without significant change in size compared to recent prior, measuring 77 x 20 mm (image 80). Pleura: Stable small loculated left pleural effusion with associated pleural and interlobular septal thickening. There is unchanged biapical pleural-parenchymal thickening/scarring, left greater than right. Heart and mediastinum: The thyroid gland is normal. Stable mediastinal and hilar lymph nodes measuring up to 6 mm in short axis, for example low pretracheal node on series 302 image 42 and AP node on image 46. The cardiac chambers are normal in size. There is no pericardial effusion. Soft tissues: There is no significant subpectoral or axillary lymphadenopathy. Abdomen: Please see separate CT abdomen and pelvis report of same day. Bones: There is moderate spinal degenerative changes. No suspicious lytic or blastic lesions. IMPRESSION: Lung cancer surveillance status post left lower lobectomy: Subpleural consolidative masslike opacity along the lateral left upper lobe is unchanged compared to most recent prior but remains suspicious for primary lung malignancy. Stable small loculated pleural effusion with interlobular septal thickening consistent with lymphangitic carcinomatosis. Enlarging pulmonary nodules bilaterally since at least 7/5/2019 suspicious for progression of metastatic disease. New groundglass and tree-in-bud nodules in the anterior right upper lobe may represent inflammatory or infectious process. Attention on follow up is advised.
This part of chemo I had forgotten. A bone numbing fatigue that even a consummate overcomer such as myself cannot override.
It is difficult to be patient. My mental energy remains exultingly high. I have plans, big plans. And much to accomplish.
In three weeks I shall have my first scan and will know better whether this hit on my physical self has been for naught. Of course I remain exceedingly hopeful that my cancer is also struggling. And if that is the case, well, then I can continue to justify this reduction in stamina.
I have an agenda. A clear agenda that keeps me incredibly focused. Tolerant of discomfort. Stubborn and steadfast. Eyes on the prize. Eyes on tomorrow.