For those who were unable to register for the event, here is the video from ICRF–LIVING WITH LUNG CANCER: A LOOK AT PROMISING CANCER THERAPIES.
For those who were unable to register for the event, here is the video from ICRF–LIVING WITH LUNG CANCER: A LOOK AT PROMISING CANCER THERAPIES.
My mood is a wobble.
The good news–thanks to a miracle product suggested by a nurse who works with head and neck cancers, my mucositis is finally under control. Yet there, but a tiny little brush fire. I ordered this stuff from Amazon and it’s not cheap but it is worth every penny.
I have scans again next Tuesday—because of the time off treatment they came up fast. Infusion is scheduled again two days later but I am hoping that Jess and Alice will read my scans first and we can discuss.
My ongoing issue is depression. Given that I had an infusion reaction right out of the gate, I am wondering if this could be related to cytokine release–which my smart friend Janet suggested as a possibility. I have been dealing with GI symptoms–both diarrhea and vomiting, as well as occasional chills; all of which could be attributed to cytokines. Those are manageable side effects, but being sad is not.
I continue to prepare meals, walk my dog, go to the studio. And–with social distancing observed–I am gradually becoming more social. On Saturday my friend Jim picked me up and we drove up the coast–with masks on and windows open–stopping at a restaurant on the marsh just south of Portsmouth for fried clams and a lobster roll. It was so much fun. I’ve had three other picnics in the past two weeks now; that and hiking seem to be the best sort of outing for the moment. My friends have all been super respectful when it comes to wearing masks, for which I am most grateful.
So that’s the scoop (one daily, mixed in water, for the Healios).
Without a doubt part of what gets me through is a solid belief that nothing is wasted. Even the shittiest of circumstances can be the basis for good compost and thence a thriving garden.
After a four week break I had yet another infusion last Wednesday. Happily, it took a week for the mucositis to rear its ugly head and thus far it is manageable.
The day after infusion I felt a distinct lack of motivation. However it would take another several days for depression to kick in.
To return to the metaphor of agriculture, this is no garden variety depression. Rather, it is something I can only describe as despair.
So very unfamiliar to me, who has cycled quickly in and out of depression my entire life. This is something different–something heavy that sits upon the center of my chest and refuses to budge. Without raising red flags (I’ve got this) it is the sort of boundless sadness that includes suicidal ideation.
Yes, that bad. And yet—I understand implicitly that this is chemical. Previously I wondered how much had to do with being uncomfortable–the mouth sores–but this time it is clearly independent.
For whatever reason this drug fucks with my head–big time. It is difficult to collaborate when you are the only person reporting such a side effect and unlike lorlatinib, this is not a small molecule designed to cross the blood brain barrier.
No matter. My empirical evidence rests on my own account–the very reason humans are used in phase I trials. Although this molecule may be having some modest benefit against my cancer, the cost to my psyche is untenable.
Surviving is a tricky business. The first requirement is consent–another way of saying a strong desire to live. This drug diminishes that instinct in me–to a notable degree. Had I not so much self control and the ability to step back and be unemotional, I would say to a dangerous degree.
As someone who has (and continues to) dally with recreational drugs I understand that this is chemical and therefore not without end. When I take an edible (THC) and get too high, I know that within perhaps a five hour window, I will come back down. This is going to take longer—possibly weeks. However, I am reassured that although it is me feeling this way (despair) it is not without provocation. There is a light at the end of the tunnel–my will to survive and its attendant joie de vivre will return. I just have to hang on.
I have the ability to remove myself from certain situations–not take it so personally. This sucks but it is also the fodder for great learning. As a cup half full individual I don’t believe I have ever fully appreciated the challenges of mental illness and depression. I now understand that mental health is even more fundamental than physical health. I am currently not suffering physically but my mental state is precarious. That is instructional and humbling both.
In two weeks I will have to decide if it is worth having yet another infusion. Today I would say no. Adamantly. As important as my lungs are, it is my brain and my mental state that actually commands this ship. And these high seas are not to my liking.
My friend Diane, a firecracker of a fundraiser for lung cancer, is having to make some adjustments this year due to the pandemic. She sent out this letter to her friends and supporters and I asked her permission to reprint it. Please consider helping her in this quest! xo
Dear Friends & Family, I hope this email finds you well and safe! What a crazy time we are currently living. I don’t think any of us expected to experience a pandemic like this in our lifetimes. As I write, I am “sequestered” at our home in Maine. I’ve been in Maine for over 12 weeks. The first eight weeks I was by myself (well I did have Ziggy, our dog with me). Dean came up for weeks 8 & 9 but he had to go back to Boston on Memorial Day, as his work from home was winding down. Cole and Will joined me week 10 and are with me for the remainder of the summer. Dave continues to go to work every day as Charm Sciences is an essential business. We’re trying to figure out how best to keep me “safe” but still allow he and Dean to visit us in Maine periodically.
Like so many things in our lives right now, things are uncertain. Many activities and events that we participate in are on hold, postponed, or canceled for the time being. Our annual Pan Mass Challenge (PMC), an annual bike-a-thon across Massachusetts, benefiting lung cancer research at Dana Farber Cancer Institute (DFCI), is no different. Usually the first week of August, Dave & I join more than 6700 cyclists and 4000 volunteers to raise money for life-saving cancer research and treatment at Dana Farber. This was to be Dave’s 12th PMC and my 9th. This year the PMC is being “re-imagined”, and both Dave and I are trying to figure how that is going to look for us.
Riding in large groups is not going to be an option for us this year. Dave is planning a Pan-Mass ride with some fellow teammates but is looking at perhaps a northern route rather than the typical southern one…they are still figuring out the logistics. The good news is, if the weather doesn’t look good the first weekend of August, they can choose a different weekend. I may join them for a leg or two of their ride but again will depend on what’s happening in our world at that time – for me riding in any group may not be an option.
So what will I do? I have been inspired by a story about another Stage IV lung cancer fighter, Isabella de la Houssaye, who just completed a cross country cycling trip from San Diego, CA to St Augustine, FL … that wasn’t quite enough so she added an additional leg from FL to Washington DC….all to raise awareness about lung cancer. You can read her story here: https://ridewithgps.com/journal/4698-user-spotlight-isabella-de-la-houssaye?otu= and on her website http://www.bikebreathebelieve.org. I’ve decided since there will be no actual PMC this year, I am going to do my own “virtual” cross country ride using my Peloton and road bike…3,000 miles by year end…hopefully much sooner than that!! I will keep you abreast of my progress via social media!
Our mission at LUNGSTRONG is to raise funds for innovative research so that lung cancer is a treatable disease and no longer fatal. 100% of the money that Team LUNGSTRONG raises goes towards much needed Lung Cancer Research under the direction of Dr. Pasi Janne, Director of the Lowe Center of Thoracic Research at DFCI. Dana Farber has been leading the way in lung cancer research and we know that the money that Team LUNGSTRONG raises is helping them find a cure. In the last 10 years, Team LUNGSTRONG has raised close to $3.5 Million!! Dr. Janne has used the money we raised to support a number of his junior investigators to fund development projects and “out of the box” research. To date, we’ve helped fund Dr. Oxnard’s work in circulating cancer cells, Dr. Ozers work in small cell lung cancer, and this year Dr. Cheng’s work on genetic changes in blood from immunotherapy. In addition, the money we raise is funding some of the research data specialists at DFCI that are working on the correlative science – looking at markers in tissue and blood samples. I’ve attached a letter from Dr. Janne that outlines the specific work that LUNGSTRONG has funded so you if you are interested in it, you can read the details. The bottom line is, the work that we are funding is truly making a difference in the fight against lung cancer. Our goal this year for our team of close to 90 riders, is to raise $500,000, Dave and I hope to raise $20,000 together.
Due to the current economic situation, the PMC has waived all fundraising minimums but this does not mean that the need for cancer research is less important. In fact funding cancer research is even more critical and funding lung cancer remains crucial to changing the face of this disease. We recognize that these are hard and uncertain times, if you are interested and able to support our ride you can do so by sending us a check, payable to PMC, or to donate on-line go to: http://www2.pmc.org/profile/DL0173 or http://www2.pmc.org/profile/DL0113. No donation is too small and if you are unable to donate – no worries, we appreciate all of the thoughts and prayers you send our way! Also, it doesn’t matter whose link you donate to…we share between us!!
Every day I feel incredibly blessed that I am still here and that I’m living well with Stage IV lung cancer, but this is not the norm. It’s been 2 1/2 years that I have been on this clinical trial. Currently, the standard of care, for my type of lung cancer, works on average for 19 months before becoming resistant. The clinical trial that I am on is specifically to see if this combination of drugs will give patients a longer time period before becoming resistant. This week my scans showed that my cancer continues to be stable, so this clinical trial is doing what we hoped it would. I want others to have this same opportunity.
Today only 18% of the people diagnosed with lung cancer live more than 5 years. It’s our dream that one day lung cancer will be treated as a chronic disease not a terminal one! We want to be a part of changing the stigma and to reverse the statistics!
Dana Farber is a leader in innovative lung cancer research and is working diligently to find a cure. There has been more progress in lung cancer research in the past 5 years than there has been in the last 30 years! We are blessed to live so close to Boston and to have this kind of care accessible to us. We are very excited to be part of a team that will continue to support this critical work, giving us the hope that we need.
I know that many people have been adversely affected by covid-19 and the pandemic. Know we are thinking of you and hope that you and your family are well and safe. We both feel extremely blessed for the support that our families and friends give us year after year, both emotionally and monetarily.
Many thanks for your continued love and support of our family,
Diane & David Legg
2 Main Street #735, Harrison, ME 04040
PS – Donations are tax deductible and 100% will go to the Dana Farber Cancer Institute. If your employer has a matching gift program, ask your Human Resource department for a form and follow the process for matches. To learn more about the PMC, visit http://www.pmc.org.
PSS – Please feel free to forward this email to you friends and family!!
So I had to skip my dinner with friends Sunday night (shrimp! lobster! pear frangipane pie!) and my date on Monday as my GI tract had other ideas. Given that diarrhea (yes, that kind of trouble) is now an established symptom of COVID19, my oncologist asked that I get a third test.
This one was a trip—drive to an urgent care clinic in Lawrence on Monday (last time I went to New Hampshire), park in a special spot and call to say I was there. Within minutes a nurse in a hazmat suit came out and the swab was inserted in my nasal passages through the window of my car. A few hours later, I had results (negative).
Yesterday I drove an hour to Waltham for my lab work. I got there early as I had a half an hour meeting first. I also had a zoom conference at noon with some other advocates but I was spent—so apologies were made and a nap ensued instead. Goddess Susan fetched Kumo at 5 pm.
I was up at 4 am today (I like an alarm clock as much as I like a leaf blower) to make sure I was at least somewhat organized. I will need to leave for Boston around 6:30 am for my next infusion. I am hoping that having my blood work yesterday will speed up this process as I serve on a panel for precision medicine at 2 pm (zoom) and another meeting (zoom) at 3:45. With any luck I’ll make it home first but it is highly likely that I shall be convening from the hospital and maybe even my infusion chair. It shall add a touch of authenticity 🙂 .
Kumo has his teeth cleaned (under anesthesia) tomorrow and Susan will drop him off but I will pick him up later in the day. There will be some convalescing chez Linnea on Thursday and Friday.
I am prepared for the onset of mucositis again—but hoping that depression stays away. However, from the empiric standpoint, if my mood suddenly goes south I think it’s safe to say it is a side effect of DS-1062a.
I have always been a person who cares. Inequality, environmental issues, criminal justice reform.
If you were my roommate in college, you would have had to put up with the kitchen cupboard I turned into a bulletin board covered in newspaper articles. Now facebook is my podium.
One cause that was never on my radar was lung cancer. That is, until I was diagnosed back in 2005. Even then, it would take another three years and being restaged to IV, before I became involved in advocacy.
The majority of the other advocates/activists I know also have stage IV lung cancer. But there are a remarkable subset who were diagnosed (and remain) at an early stage. Ostensibly they could have walked away from this world. And how about the spouses, partners, parents, children, caregivers, friends, family, widows and widowers who don’t have lung cancer at all.
We–those of us with advanced disease–couldn’t do it without them.
To choose to advocate for lung cancer patients–even with all of the bias, stigma and an incredibly high mortality rate–that takes a lot of commitment, courage, and compassion.
So I just want to say thank you for this extraordinary expression of love.
Not only does it make us feel cared for, it underscores the fact that we are like one big family. And that is a formidable feeling.
My endoscopy on Monday indicated a normal esophagus. My first thought was that maybe I was just a big flipping baby but my oncologist assured me it simply meant that the discomfort was indeed induced by drug. We decided to hold off one more week—bless this trial for having a four week window. I will return for my next infusion on Wednesday–almost seven weeks after the previous one.
Traveling to the endoscopy was not something I could do alone, as I was sedated. My friend Marc picked me up in the morning, wearing a mask (as did I). He has a small sports car so I rode in the back seat. Brian, also wearing a mask, drove me home. He had totally wiped down the passenger side. Bless my friends for being both so thoughtful and protective.
On Tuesday I went on another date–hiking at an Audubon center in Concord NH. Wednesday a curbside vet appointment for Kumo (little boy has periodontal disease)–he will require a cleaning and some extractions this coming Thursday.
I also managed a couple of zoom meetings, five visits to the studio, another walk with a friend and a picnic in NH. In all cases masks were worn and social distancing observed. Texts and phone calls with my kids, my friends, and a handful of my exes (who are now friends 😉 ). Zooming with Chris Draft (we have a project underway). A trip to the liquor and grocery store.
Dinner on a deck tonight with another friend and her fiancee. Another hiking/dinner al fresco date tomorrow.
Damned if I am not getting the hang of this. It is different but life as we currently know it.
Next week I will take part in a zoom meeting, appear on a virtual panel on precision medicine, and continue conversations with pharma.
There is a chance that my next infusion is going to hit me hard. I am glad I have had a break in which to build stamina–both emotionally and physically. At the moment, I feel GREAT. I think all the interactions with others have played a big role as well–this girl needs people. Big time.
Life is not fair. Despite hearing from childhood that ‘you can be whatever you want to be’ it’s not that simple. If you are born poor, you’re likely to stay poor. And if your parents were wealthy, chances are you were afforded opportunities and privileges denied to most. A solid head start.
But boy do we love overcomers. First, it feeds into this mythology. Which alleviates guilt (I have, and you do not, but you could if you only tried hard enough).
The loose use of the word hero during the pandemic has been part of this particular story line. Frontline workers. Rather than supplying them the actual support they need (PPE, higher wages, true recognition of the essential services they provide) they have been labeled heroes. Try to cash that one at the bank.
I can say this with confidence. From personal experience. Even though I was born white and into a middle class family, I already had several marks against me. First, I was a girl. Second, my family was deeply dysfunctional.
At the age of twenty four I got pregnant. I didn’t really know the father–we had been dating for six weeks. My family had long ago split into two equally unhealthy arms (what’s worse than two dysfunctional parents? Four). My mother and stepfather urged an abortion and then demanded marriage. I refused the first but tearfully caved on the latter.
Within a year my stepfather would fly his small aircraft into the face of a cliff on his 65th birthday. Suicide. Two weeks later I discovered I was pregnant for the second time and that my short marriage was over. My mother was now bankrupt so I asked my father and stepmother if I could move in with them for a short time. The answer was no.
By the time my daughter was two, it was obvious she was being sexually abused by her biological father. I was only twenty six, an unmarried mother of two, but I did my best to deal with the system and to protect my children. Ultimately I would fail, as the abuse continued.
First we were on food stamps, but then welfare. And you know what my gold star was? Everyone told me what a good mother I was. Truth is, I was in way over my head, totally overwhelmed, and could have used some fucking help.
It’s been a struggle in one way or another ever since. I am an overcomer. The way I handle adversity makes others feel better.
But just because I keep showing up for practice, it doesn’t mean I’m not aware that I got a pretty shitty role in this play.
So back to the present. The anger, the outrage, the demonstrations and the looting. There is a fixation on the latter. And yet no one should be surprised.
Sure, these may be ‘lawless’ individuals who are taking advantage of the chaos. But you know what? That term looter, like hero, is often applied loosely. Someone who breaks into a store and steals some shoes is, to my mind, no more of a looter than someone who is obscenely wealthy. The difference is one is protected by our laws whereas the other, if caught, will be prosecuted. The rich will stay rich and the poor will get poorer.
Although I would not go so far as to say I am an anarchist (I like some order), my ideology is radical. I hate racism, deplore our criminal justice system, and feel that capitalism is at the root of so much that is evil.
Life is not fair. Anger is justified. Nobody should be poor, but more importantly, absolutely no one deserves to be filthy rich. Having a billion dollars should be a crime.
And until we all acknowledge and own this inequity, the world is going to continue to explode. As human beings, we can do better. We can heal the hurts, stop trying to justify injustice, quit trashing our home–I’m not talking about looting, but rather the destruction of nature and the environment.
When someone tells me they are sorry that I have cancer, I invariably respond with ‘it’s ok.’ Which of course makes them feel better. Perhaps I should just thank them for acknowledging my bad luck.
My own response to inequity is to use what I have to address it. Would I love to be a philanthropist? Sure. But I have no talent for acquiring money. And if I did, I would be ashamed to live in luxury while others struggle in poverty.
That is what drives my activism. I have been given more time. And although I can’t share it, I can do what I can to make sure others are given a similar opportunity.
The world is hurting. Big time and in so many different ways. We can respond by hiding in our bunker and dimming the lights. Or we can acknowledge that we are all in this together—one big, giant, screwed up family. And if we want to end this cycle of abuse, well, it’s time we owned our problems. Stop turning a blind eye. Work together. Pass the plate. Do our best to make certain everyone is given an equal portion.
Grace versus gluttony.
Not long after my diagnosis fifteen years ago, I watched a documentary called The Boys of Baraka. At the time I was feeling sorry myself–a forty five year old never smoker with lung cancer.
That documentary humbled me. As bad as cancer was, I was all too aware of my extraordinary privilege. I had a whole medical team trying to save me and frankly, my chances of survival were likely greater than a young black boy from Baltimore.
Life is not fair. I have had cancer for one quarter of my life—a long, long time. However, if you have dark skin, you will face a special set of circumstances from the moment you are born until you die.
Whatever you want to call it—racism, inequality, injustice—this shit is real.
Sadly, when it comes to caring, humans practice a psychological nimbyism. If it’s not in their backyard, well, not their problem.
As someone with lung cancer, I am only too aware of this sort of bias. Because my cancer has historically been associated with smoking, there is a misguided perception that A. we brought this upon ourselves and B. that if you don’t smoke, lung cancer is preventable.
Well we all know that’s not true. If you have lungs, you can get lung cancer. Logically speaking, everyone should be concerned.
So back to racism. Again, it impacts everyone. And if you are not anti-racist, well, then you are pro. There is no gray area here.
People are people. It is absolutely unacceptable that some have to live in fear because they have more melanin in their skin. Black Lives Matter is such an unassuming statement (of course they matter!). And that is the point. No one should have to justify their existence.
I hate filling out the race section on forms. In part, because I believe race itself is a human construct but also because I feel categorizing people promulgates so much of what is problematic. However, even my viewpoint is borne of privilege–my race has defined my experience in a very different way than it has for my sister who is black.
The reason I dislike categories? They are divisive. What we need now is unity. All of us, as human beings, need to stand together. We need to care about each other and to truly believe that what is bad for one, is bad for all.
There will be no onlookers. We are all participants, either actively or through our complacency.
Care. Vote. Protest. Love.