Tag Archives: advanced lung cancer

FIFTEEN

Posted on April 5, 2020 | 14 comments

Oh yeah. I might not have noticed if one of my friends had not brought it to my attention. Yup. Just kinda snuck in there—fifteen years ago I was diagnosed with lung cancer at the age of 45. Now I’m 60.

Mind blowing, all of it. Were I not social isolating and frankly so damn depressed, I’d throw a party. I guess we’re just going to have to call a raincheck.

This coming year may be the diciest yet when it comes to survival but there will be no throwing in of the towel here. Just going to have to work on some new coping mechanisms. I have gone on record saying I like a challenge…although a global pandemic was not exactly what I had in mind.

Anyway, big love to all of you. Literally could not do this without you and I am imagining one giant virtual group hug.

xoxoxo

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Weary

Posted on December 31, 2019 | 13 comments

Not in spirit, not in soul. Just body.

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.

xo

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In serious need of some mojo

Posted on November 19, 2018 | 44 comments

Plum out of that good stuff.

At the moment, my biopsy is three weeks away. Not so far really and yet also not close enough. Nebulosity. The in between. And for someone who is information driven (that would be me), not a lot of purchase.

I have the best oncologist in the world. There is no doubt she will come up with something but there is also no denying my options are limited. That pesky G1202R mutation that I acquired while on ceritinib has me backed into a corner. Fortunately lorlatinib overcame that particular resistance mechanism.

It was heady stuff; feeling good, and I had a mighty good run. But I also got a little carried away as I allowed myself to believe that maybe, just maybe, I was cured.

Yep. That was fun while it lasted. But now I’m ready to rumble, so to speak.

In the meantime, I am grateful for my formidable group of friends. After my last blog about the over the top copay for Advair, I received lots of offers for assistance. Linda S. got right on it and overnighted me an inhaler. Mucho mucho gracias darling–I am breathing easier because of it. And thank you to the rest of you as well.

But back to that missing mojo. It has been my experience that the best way to refresh that particular feeling is a giant group hug.

So lean in y’all. And squeeze extra tight.

xo

44 Comments

Posted in ALK+, progression, Uncategorized

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Deepest Indigo

Posted on August 26, 2018 | 34 comments

IMG_2826

Depression is having its way with me.

Yesterday I took myself to Five Guys for lunch. A small cheeseburger, fries and a chocolate malted. Not so bad, as I am working out again.

But then dinner rolled around and so did my gloom, just like a bank of fog. I started with a glass of white wine (that bottle was staring at me so I just decided to kill it). Some black licorice. Five olives. A beer and a banana. Cereal with goat milk kefir and frozen blueberries. My repast all over the place, just like my mood.

I feel as if my schtick is strength and positivity. For the curriculum vitae I am putting together I have Adversity Expert as one of my skills (given my lack of actual substance, I am taking some creative license with my CV). And honestly, I feel as if I am letting some of you down by so openly sharing my current depression.

However, in the name of keeping things real, this is part of it. Any one of the stressors in my life (emotional, financial, physical) is enormous and when you add them all together, it is, on a good day, extremely challenging. And on the bad days–overwhelming.

What I am describing is OTSD–ongoing traumatic stress disorder.

Yes, I am unusually resilient. However, almost thirteen and 1/2 years of dealing with this shit has taken its toll. Last night I managed to waken myself from a nightmare because (and I distinctly recall saying this to myself) ‘I don’t want to see where this is going.’

If only it were so easy to walk away while awake.

So please bear with me as I move through this tough place. As my Granny B was fond of saying, ‘this too shall pass.’ And so it shall.

34 Comments

Posted in Attitude, Coping, Living with lung cancer

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Terminal, incurable, alive.

Posted on June 25, 2017 | 39 comments

It’s a heady mix. You have advanced cancer which is, by definition, both incurable and terminal. And yet, thanks to ‘the wonders of modern medicine’, you’re alive–aka–not dead yet.

Because you prescribe to not just a glass half full but rather a ‘my cup runneth over’ mindset, you always try to stay focused on the bright spots. First, waking up in the morning. Never, ever, taken for granted. The chance to see your children even a few minutes longer–mind blowingly awesome. Meeting fellow travelers on this friggin ‘journey’–others who’ve been smacked upside the head with cancer–your life has been made oh so much richer by each and every one of them. And then there is the fact that you get to hang with your oncologist (a goddess) and a bunch of swell nurses—perk and more perks.

So yeah, you’ve been fortunate. And at the moment, you are on a targeted therapy that is keeping your cancer in check. You don’t even look as if you’re sick, let alone terminal.

Which, by the way, makes it very easy for those around you to forget that you have cancer at all.

But you, you’re always aware. Friedrich Nietzsche once said “That which does not kill us, makes us stronger.” Bullshit. Sometimes it just keeps on trying.

Each day you continue surviving is an achievement. It is also a tremendous struggle–physically, mentally, emotionally, financially. An endless struggle too, as there is no top of the mountain, no victory lap, no cure in sight.

The heady mix becomes a mind fuck. If you are lucky, you have adequate support. Enough resources so that you don’t live in a constant state of anxiety; friends and family with sufficiently long attention spans who don’t drop away when terminal becomes chronic.

Because the truth is, nobody wants to think about cancer all the time. My marriage ended, in large part, because my partner found our lives too ‘cancer-centric’. I’d break up with cancer this very moment if I were able to, but it seems we are one and the same. Cancer doesn’t just inhabit my body, on a cellular level, it is me. My own selfish, nihilistic and wildly dis-obediant cells.

Sigh. Living well may be the best revenge and most of us do whatever we can with what we have to work with. I’m certainly not interested in becoming a schadenfreude. However, when living itself (liv·ing: a : having life) is a big fat uncertainty, then living well often requires more psychic energy than a person can muster.

Short of curing cancer there’s not much you can do other than to be understanding. And supportive. It’s not easy living with the knowledge that you are terminal; harder still to remain happy while doing so. Honor that.

39 Comments

Posted in Attitude, Death and dying, living with advanced cancer, stage IV lung cancer, Uncategorized

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When you can’t remember shit

Posted on September 20, 2016 | 16 comments

L1110016

Perhaps the best greeting card ever.

First, a blanket apology to anyone whose birthday I have forgotten this year. Same goes for all those unanswered emails, texts, phone calls, missed appointments and other no-shows.

Once upon a time I and my ability to recollect were reliable. As a child, I possessed an eidetic memory and when I wished to retrieve an event it was almost as if I were watching a movie of the past in my brain. According to literature the ability to remember things in an almost photographic sense disappears in adulthood, but I am a highly visual person and always utilized a sort of Hansel and Gretel bread crumb approach; when trying to remember something I would visually retrace footsteps in my mind until I came back to the thing I was searching for.

That is, until I started my current therapy, lorlatinib. A small molecule designed specifically to cross the blood brain barrier, lorlatinib is able to deliver drug to tumors within the central nervous system. This is great news for individuals with brain mets but it also means that there may be accordant cognitive side effects. I started early in the trial during dose escalation and at a previously higher dose than I am now taking, and those cognitive side effects were so pronounced that a few weeks into the trial I felt as if I could no longer process or reason. Fortunately lowering my dose improved that scenario but I still felt as if my memory had been completely wiped and that I had suffered something akin to a brain injury.

Because I was also in the midst of a nasty divorce it was hard to parse the stress from the effects of therapy, but suffice it to say that life was challenging.

Two years out I am not only still alive, I feel almost as smart as I used to be. However, my memory is still completely shot. Add advancing age into the mix, and I think it’s fair to assume that I will continue to do things like purchase airline tickets to the wrong city (last summer) or for the wrong day (upcoming trip). It’s a little unnerving and yet you know I like to look on the bright side (cue Life of Brian). Historically I was a mental ruminator, and often made myself miserable by reviewing unpleasant situations over and over. Well guess what! Not being able to remember shit sometimes comes in handy, and I no longer dwell on much of anything.

Although my memory challenges make life less predictable, I am learning a lot about flexibility, personal forgiveness, and a whole lot of scrappy. In the case of the flight to the wrong city, I rented a car (first time ever, alone) and drove the additional 400 miles to my intended destination.

So even if I miss the boat entirely (wink wink–see above), I know I’ll still get there. I just might not remember how.

16 Comments

Posted in Coping

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But I know more details would be helpful…

Posted on September 14, 2014 | 85 comments

My beautiful daughter on a particularly fateful day.

My beautiful daughter on a particularly fateful day.

Is there some fresh way of saying ‘It’s been a challenging time?”

No, probably not. And besides, challenging is a euphemism; a gentled version of what I wish to convey.

It’s been a difficult year, and the year before that as well. Adjusting to life alone, the continued progression of my lung cancer, a short stint on Xalkori, and then at long last admittance to the PF-06463922 trial. But it has not been without wonder.

About that trial…

I went in with low expectations, as my second secondary acquired mutation (G1202R) is highly resistant to all ALK inhibitors, although results in the lab indicated that my cancer could still respond at higher doses. I entered in the third cohort, at a dose of 75 mg. I was delighted when my cough began to abate almost immediately. But then four days after regular dosing started, I began to experience marked shortness of breath and the sensation that something was caught in my windpipe. I was coughing a lot and some of it was streaked with blood. The following morning there was a small clot of blood in my sputum, but my shortness of breath had abated. However, upon awakening the next day I coughed up yet another small clot. Hemoptysis is one of those things you just can’t ignore, so I sent a text message to Dr. Shaw, who was away at ASCO.

While waiting for a response, I received the phone call from my stepfather Jim telling me that my mother had passed away.

And that phone call was followed by one from a member of the clinical trial team, telling me that I’d been scheduled for an urgent CT scan, in order to rule out a blood clot or pulmonary embolism.

Fortunately my daughter Jemesii had the day off and pretty much insisted on meeting me at the hospital. I was going on adrenalin at this point and don’t know what I would have done without her. In prep I blew two IV’s for contrast (these veins are getting tired) and ended up having a vasovagal response (never happens to me) so I earned some time out in the recliner with some intravenous saline. And then after the scan wrapped up Jemesii and I headed over to the Termeer Center for the results.

And this is when things got really weird. The attending physician said I had neither an embolism or a clot. “How about cancer?” I asked. “Is that all gone?”

“Well, no…but…” she said, and then read from the report:

Lungs and Airways: Status post left lower lobectomy. A mixed
attenuation lesion in the lower portion of the remaining left upper
lung is significantly smaller than on the prior exam now measuring 2
cm x 1 cm x 3.2 cm significantly smaller than on the prior exam where
it measured approximately 8 x 7 cm in diameter. A small right upper
lobe mixed attenuation lesion (series 4, image 330) measures 6 x 7 mm
minimally decreased from prior measurement of 7 x 9 mm. 4 mm region
in the left upper lobe seen on series 4, image 339 is not
significantly changed. A nodule in the right upper lobe seen on
current examination (series 4, image 314) and on prior examination
on 66, image 155 now measures 4 mm in diameter down from 6 mm. And
unchanged region of atelectasis is present in the left upper lung
near the left hemidiaphragm. Additional nodules. Similar in size to
prior exam. No new nodules are seen. There is no evidence of new
pneumonia or pulmonary edema.

I had begun regular dosing six days prior and an 8 x 7 cm chunk of tumor had melted away to a mere shadow of itself. It was just unbelievable.

Stunned, Jemesii and I decided that a good meal and an even better glass of wine was in order. We raised a toast in honor of my mom. And then we raised another to the future.

85 Comments

Posted in ALK mutations, Treatment

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Future tense

Posted on April 3, 2013 | 15 comments

Peter Duff tries to thwart a candid shot (fail)

Peter Duff tries to thwart a candid shot (fail)

On the second of April, Peter, David and I attended Experience Exeter, a daylong introduction to Phillips Exeter Academy for admitted students as well as their parents. To say we came away dazzled is an understatement.

Of course, there is something very bittersweet about the fact that Peter shall be going off to boarding school. Yes, it is the realization of both a dream and some very focused and labor intensive campaigning on the part of yours truly. I couldn’t be happier about the end result:  a new world is going to open up for Pete; one glittering with opportunity. In addition, he will become a member of a community that shall provide him with academic, social and emotional support.

However, from a purely selfish standpoint, this is going to require some adjustment. You see, Peter Duff is really great company. I adore this kid and love spending time with him. A couple of days ago, the two of us were out running errands. At one point I began to feel a little emotional and turned to Pete to say, “I’m really going to miss you.” He responded with, “I’m glad you’re going to miss me.” (versus the alternative!) However, what I heard was “I’m glad you’re coming with me.”  That is what you call wishful hearing.

For a peek into what the future holds for young Master Duff, check out the lovely video PEA sent along with the email announcing his acceptance:

(if you don’t see a video, you may have to download vimeo—my apologies!)

15 Comments

Posted in Cancer and our children, Coping

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Some close shaves

Posted on February 2, 2013 | 23 comments

Some incredibly high winds blew through the area on Thursday. Upon awakening Friday morning, we discovered that two big pines had fallen and brought a large branch from a maple tree down with them. The whole mess grazed the edge of the house and somehow landed in between the propane tank and the air conditioning unit. A section of the chain link fence was destroyed and one errant branch took out some screens on the porch, but all in all we got lucky. However, David has decided it is time to bite the bullet and pay to have a few more trees removed, as a direct hit would have been devastating.

Friday brought a bit more anxiety, as I got a call back in reference to the mammogram I had on Thursday. I refuse to believe that there is actually an issue, but I will have to go back in on Tuesday for another read.

And then, just before noon I was rushing around to get out the door and rolled my left ankle (the same one which sustained a spiral fracture in 2009) and took a nasty little spill. I limped back inside, iced and elevated, and then decided it was going to be just fine, and I could go run my errand.

It turned out to be a poor decision and by the time I got home I was really hurting. More ice and elevation, but as my discomfort grew, I felt a trip to urgent care might not be a bad idea. However, first I had to help Peter with the last of his application essays. Once the submit button was pushed, David fetched my crutches from the garage and we were off. Three x-rays later it was determined that I’d sprained my ankle and I left with a splint and instructions to check in with my orthopedic surgeon next week—just to make certain that the hardware inside my ankle hasn’t shifted.

And then there’s my head. The chemo cocktail that I am receiving lists hair loss as a potential side effect. At first it seemed as if my follicles might just hang on, but by week two they began to lose their grip. A couple of days ago I came to the conclusion the comb over look had to go. First I snipped off as much as I could with the shears, and then David clean it up with electric clippers. Always a bit of a shock initially, sans hair, but I am actually much more comfortable.

Two bald Linnea's

Two bald Linnea’s

23 Comments

Posted in Chemotherapy, Treatment

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Damage control

Posted on January 5, 2013 | 22 comments

I am still experiencing significant peripheral neuropathy. Specifically, decreased sensation in my fingers (such that buttoning my coat is difficult) and my toes as well. Thankfully, my face–nose, tongue, throat, lips, are just about back to normal. However, there is one uncomfortable detail that I have not yet shared:   the muscles of my pelvic floor have gone bonkers:  uncontrolled muscle contractions every few seconds accompanied by burning pain. The level of discomfort verges on extreme and is the sort of thing that, should it continue unabated, could just drive me crazy.

This unpleasant scenario seemed to begin with a urinary tract infection on Christmas eve. I had a previously scheduled appointment with a urologist two days later, and I described the sensation to him. At that time we both felt it was related to the UTI. However, even after the infection cleared, the urethral spasms continued. Before long, the neighboring muscles got on board (yeah, those muscles). I contacted Dr. Shaw and allowed that this might in fact sound crazy, but that it was very, very real. She prescribed neurontin, which has helped dull the burning pain but had no impact on the contractions.

I have looked online but found very little to corroborate my experience. Certainly the fact that I had four rounds of cisplatin and taxotere (both highly neuropathic) in 2005 made me more susceptible to subsequent peripheral neuropathy. And it is not without personal precedence. Platinum has the potential to be the gift that keeps on giving, with progressive symptoms of neuropathy weeks to months after the final infusion. In November of 2005, a little over two months after my final dose of cisplatin, I experienced the very same situation; burning sensations and extreme spasticity–also referred to as hypertonic muscle spasm–in the perineal region. I was so miserable (and freaked out) that I ended up in the emergency room at MGH. There were no findings, other than the fact that I had recently had a urinary tract infection. The discomfort continued for several more weeks and then finally disappeared. At that time, it never occurred to me that my symptoms could represent peripheral neuropathy.

As to why it has affected my pelvic region, I can only suppose that there had been previous injury to the nerves serving that area. I joked with Dr. Shaw that the 10 pound 4 ounce baby might have been a contributing factor. Further research revealed that there are certain risk factors for pelvic floor neuropathy that are associated with childbirth. High birth weight (that big baby was not delivered by cesarean section), forceps delivery (first birth), extended and active second stage (first and third labors).

On Wednesday I have an appointment with Dr. Shaw followed by my second round of chemotherapy. The data  suggesting that progression free survival is longer when Alimta is combined with carboplatin is persuasive. If the neuropathy has cleared up by then, I will consider going with a reduced dose of carboplatin. However, if the pelvic neuropathy continues, I will choose to go with just the Alimta.

Ultimately, I value quality over quantity.

22 Comments

Posted in Chemotherapy, Coping, Treatment

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