What does it say about the world of lung cancer advocacy that all the people in this online magazine are my friends. Proud, proud, proud to know these folks and fingers crossed that ten years from now we’ll do a reprise. I’m talking to you Julie, Andy, Sara ❤
PS: I’m the tall girl flipping a peace sign at Machu Picchu. Pg 24. Inside joke. Whenever I’m meeting an online date somewhere for the first time, I tell them ‘I’ll be the tall girl.’ I crack myself up 🙂
Posted in Uncategorized
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.
Posted in ALK mutations, Uncategorized
Tagged Lorbrena, lorlatinib, remembering to take medication, stage IV lung cancer
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.
Posted in Attitude, Uncategorized
Tagged connection to the universe, fear of dying, stage IV lung cancer, terminal illness
Peter has been in Hawaii for the past week, studying the environment with his program at MIT. He has been sending me joyful photos of jungle, ocean, volcanic ash. Obviously he is in his element and it makes me oh so happy. I just hope he comes home to New England 😉
And August and Lily made it to Toledo, despite some momentary drama the morning of their departure. It was the day with single digit temperatures and when Aug hit the highway, his car started shaking violently. Fortunately I have THE BEST MECHANIC IN THE WORLD (J & R Auto Repair in Chelmsford MA) and Aug turned around and headed straight there. John (of J & R) took one look at the car and diagnosed ice in the rims and prescribed a good spray at the carwash as the solution. John is honest, smart, kind and a bit of a mensch–he sent that kid off without charging him a dime. ❤
Of course I’m missing August already and fortunately the feeling is mutual. He sent me this text from the road: “I miss you a ton mom. The last few months were some of the best of my life.” Swoon. And then Facebook gifted me with a reminder of the backpack I received from Aug last Christmas. There is a little clear plastic sleeve for name and address and August filled it in with this precious message:
Being a mom hasn’t always been easy but it has always been the best. My three kids have taught me more than anyone or anything else and I love them to the moon and back. I take nothing for granted and am so profoundly grateful that I have had the opportunity to see them grow into adulthood.
Thank you medical research. Keep up the good work 😉
Quick report here starting with a simple turn of phrase. In the topsy turvy world of cancer, where progression is unwelcome, the word unremarkable is a guest of honor. Dull, uninteresting, common, ordinary.
In describing my latest scan, Alice used that parlance—the tumor abutting my heart is unremarkable. More than likely it is the schmutz in the bottom of my lung that is responsible for both cough and shortness of breath. However, most reassuringly, that area of cancer has not changed in the two months since my biopsy. Hopefully this is indicative of a less aggressive spread.
Per the biopsy itself, results are pending. Thus far we have one tiny nugget of information; my cancer shows no MET amplification. By the end of the week, we should know more.
In the meantime, I think I need to stop feeling sorry for myself. Not let the bedbugs (they will be spraying a third time) get me down. Drag my ass back to the gym. Start painting again. Maybe go on some more dates.
Cut back on the gloom and start feeding my mojo instead.
Suggestions welcome 🙂
Posted in Uncategorized
Before my last scan–the one that showed progression–I was anxious. But that was because I knew something was up.
In the four plus years prior, I had let go of scanxiety. However, that was possible because of a sustained period of stability. Stability was the closest thing I’ve had to feeling truly safe in the last fourteen years and it was freaking glorious.
Now that I’m back on that active cancer rollercoaster, scans are once again something to be dreaded. However, there is a difference in how I feel this time around. It is not anxiety. Hell, I know what’s coming; it’s more like I just don’t want to know. It’s as if there’s a big fat court summons lying in a sealed envelope on my kitchen table and as long as I don’t open it I can keep pretending that it’s just not there.
Scanvoidance. That’s my new terminology. The goddamn it why-do-I-have to-live-these-month-to-month blues.
Gets old, it does. But then again, so have I. Older. And that’s something to embrace.
I’ll keep you posted.
Scans last Friday with a review tomorrow. No word on genetic testing which makes me think the final sample was also not viable. We’ll see how that CT scan looks.
In the meantime I feel a bit scooped out. Tired. Spent. Wanting so desperately to just skate along for a bit and not on this shitty thin ice.
My son August left this morning for a new life in Toledo. Proud, proud, proud of this kid who turned a hobby (cannabis) into a career. He will be the head extractor in a gleaming new lab where he will be highly compensated for the craft he’s been honing since…well, way too long.
Yep. Cannabis was a point of contention when Aug was a teen but we’ve all come a long way since then. August received a ton of assistance from his stepfather David throughout the entire application process and of course he’s been bunking with mom (me). In the end it felt rather like it did when his younger brother Peter was accepted to private school and later an elite college. That feeling of success all the way around.
I’m going to miss him mightily. His being here healed some old wounds and also returned me to a place where I felt part of a family. Cooking, watching TV, going to the gym together. Simple activities that are just not the same when done alone.
August and Peter have been my rocks during the past few months. I got really, really depressed and overwhelmed during the bedbug debacle and they were concerned as Aug was flying to Colorado over New Years and I would be alone. My sons had my friend Brian check in on me (dear, sweet Brian) and Aug sent me this text from the airport:
I love you mom. You’re tough as nails. It’s ok to have bad day but I know you’ll get through this.
I will. I always have. Sometimes in style, other times in tatters. A rip here, a tear there but holding it together.
C’est moi.
Posted in Uncategorized
I like cold weather. 17 °F on a sunny, windless day is my sweet spot. However, this morning it was 14 °F and breezy. Sun shining but after the bone chilling cold of last night (very windy and four degrees colder–no sun) I was not eager to get back out there again this morning.
Unfortunately, Lily and Kumo have not been trained to walk themselves. Didn’t stop me from asking 🙂
Posted in Uncategorized
I had a date with my youngest son, Peter, and his girlfriend Olivia last night. Dinner out and then the William Forsyth exhibition at the ICA. I hadn’t realized it, but admission is free from 5-9 on Thursday evenings so that was a pleasant surprise.
The exhibit itself was mind blowing and delightful—see above. The kids had taken an uber over and as I’d heard parking was a bear, I’d left my car at Alewife and taken the T. As I was looking for my Charlie Card, a young man was heading through the turnstile and he motioned silently for me to follow.
Now, a free admission on public transportation was not necessarily his to give or mine to accept, but I did. As we waited for the bus he was speaking in Spanish to some women I presumed to be co-workers; I am all too familiar with that end of the shift camaraderie. It was also not lost on me that this young man was likely a fairly recent immigrant.
I thought about this country, America, which was not ours to take. I thought about that wall, which is not ours to build. And I thought about this young man, who decided that he would share what was not his to give, but that which he had paid for. Why? Because I was fumbling for my ticket? Because it was late? Because we are both human beings and there was a turnstile between us and our ride home?
Yes, yes and yes.
Posted in Uncategorized
I got a call from Alice (Dr. Shaw) last week with some news per my molecular testing. As luck would have it, I was trying out a new edible (delicious, weed flavored lollie) and was starting to feel the effects. I probably should have left my phone untouched but when Alice calls, you pick up.
So I did. And…I was pretty flipping stoned so trying to make sense of what she was telling me (while also doing my darnedest to maintain decorum) took a lot of effort. Going over the conversation in my mind the next day, I wasn’t quite sure I’d understood correctly and so I emailed her, fessing up as to my state of mind at that time and asking for clarification.
I didn’t hear back from her until Monday. In the meantime I had requested that she prescribe an antibiotic as my left lung has been really boggy and my energy level exceptionally low. Obviously it could be my cancer but I was hoping that my symptoms might represent a concurrent infection. So Alice called to discuss and this also provided that opportunity for clarification.
I heard what I thought I heard, which is basically this. Evidently my biopsy was contracted and paid for by the sponsor of my trial, which meant that they also ‘owned’ one of the core samples. Another went to MGH, another to research, another was used to attempt a mouse model of my cancer.
As my tumor is highly lepidic (lace like in its spread) it is difficult to biopsy. And, as it turned out, the samples that Alice had access to actually had no viable cancer cells for molecular testing. So she asked the sponsor if she could have some of me back and they–graciously–said yes.
The hope is that this last sample will hold the holy grail and will provide some information useful to guiding my next treatment option.
If it doesn’t, we might have to consider another biopsy. That is, unless my friend the mouse (sorry little guy, I had no idea) grows my tumor, in which case the mouse will be biopsied.
In the meantime we must rely on how I am feeling in combination with a scan two weeks hence in order to assess the speed at which my cancer seems to be progressing. Given the change in histology, there is the distinct possibility that it will now be more aggressive. I hoped there might be a silver lining here, as more aggressive cancers are typically more responsive to chemotherapy, but Alice did not feel that would be true in my case 😦 Always trying to look on the bright side, I am.
Oh–and at the end of our conversation on Monday Alice asked, on behalf of one of her other patients, about the steps required to apply for a medical marijuana card. Discussing this all later with my nurse practitioner (who found the entire episode highly amusing) I told her that given the fact I was able to help Alice, we could consider my personal research as community service. 😉
And, on another bright note, I am feeling significantly better–I believe the antibiotic was exactly what I needed.
xo
ps: check out this great Health Stories Project article about my friend and fierce fellow advocate Andrea Borondy Kitts. I get to play a small cameo 🙂
Posted in ALK+, progression, Biopsy
Tagged ALK+ lung cancer, Andrea Borondy Kitts, biopsy of the lung, molecular profiling
life and breath: outliving lung cancer 