Tag Archives: stage IV lung cancer

All in a day’s work

Today is World Lung Cancer Day.

I don’t do days. Weeks, yes. Better yet, fifteen fucking fabulous years and counting.

Life wants to live, and I’ve had a good long time to get in touch with my survival instinct.

The last six months have tried me. A global pandemic and some gnarly side effects. Too much time alone with not a hell of a lot going on in the excitement department.

That’s alright. It’s been a fresh challenge. I’ve whipped those side effects into almost total submission. And, more importantly, I am learning once again to take joy in the sublime.

Unfortunately, it doesn’t actually get easier—surviving. Which means we have to get stronger.

My goal is to continually lead a more purposeful life. I can be a bit of a wastrel and frankly, this brave new world came with no guidebook. I have maxed out on diversions. The good thing about a short attention span is that even the bad habits get old fast and I’m ready to get serious again.

But not too serious. I’ve got a blonde buzz cut, a space between my front teeth, a hell of an attitude and lung cancer. My disease is not, and never will be, me.

Live, Love, Learn, Linnea

xo

Managing

Manageable. Another word j’adore because it doesn’t over promise.

To say that something is manageable doesn’t presume that there is no challenge, but clearly states that something can be accomplished without great difficulty.

My side effects of treatment are currently highly manageable. Flipping unbelievable given the fact that not so long ago I was ready to call it quits.

Instructional, this. One of the inherent difficulties of cancer is that the cure (aspirational) is often worse than the disease. And to think that I might have stopped a treatment that is essentially keeping me stable due to mucositis and over the top depression–both of which are currently manageable.

Damn. It’s spooky, particularly given the fact that I am now two years into progression, and that two years was the ball park survival stat we initially arrived at.

Too much of successfully addressing cancer is right place, right time. Had I not gone in for a COVID-19 test and encountered a nurse who had worked with head and neck cancers, I likely would not have discovered the product that is keeping my mucous membranes almost sore free (2-amino-4-carbamoylbutanoic acid disaccharide complex). And had I not been so emphatic per my degree of depression, an additional (and highly effective) anti-depressant would not have been added to my regimen.

So yes, chance. But also–and this is the part we do have control over–relentless self advocacy.

It still sucks to be going through a pandemic while also battling a terminal illness. But it sucks way less than it did a couple of months ago, when I was ready to throw in the towel.

I am back to that magical place where I say to myself “I can do this”. And that, my friends, is the essence of hope.

Simply doable.

xo

How we spend

Time is both my most precious commodity and a limited resource.

I value every moment, and whenever possible, I tend to spend it wisely.

Except yesterday. The best thing I did yesterday was to make my evening meal the day before.

Yup. I wasted the whole bloody day. Front to end, top to bottom. Watched some Netflix, napped, had an edible for lunch and then another nap followed by more Netflix.

I also walked the dog three times, took out the trash, showered, and did one load of laundry. But that was the sum total of my accomplishments.

Dinner was washed down with a beer followed by two cold drinks (watermelon, ice cubes and vodka in the blender–heavy on the melon, light on the alcohol). In bed by 8 pm.

When I got up this morning I saw the text message my son August had sent at 9 pm. ‘How’s the writing going?’. Well, not. I was busy sleeping off my own little version of a stay-cay.

There is something perversely satisfying about spending what you do not actually have. Just ask my credit card 😉 Seriously though—the idea that I had as much time to waste as the next person and therefore could be totally unproductive for an entire day even without the excuse of feeling poorly. I kinda loved it.

But that was yesterday. Today I am determined to make up for at least some of the slack I created yesterday.

Starting with this blog.

xo

Coping mechanisms

Somehow, someway. Kind of my go to motto these days. Slowly but surely I am figuring this shit out.

With the mouth sores under control (hallelujah), depression remained my biggest problem. I had a virtual meeting with a psychiatrist and we discussed the possibility of trauma therapy. I have yet to receive a referral (it was a year wait for the trauma therapists at MGH), but in the meantime she added an antidepressant to the prozac I take daily. It’s called mirtazapine and I am on 15 mg in addition to 40 mg of the fluoxetine. It seems to be working, as my mood and energy level are both elevated.

Stable cancer, manageable mucositis and mood. A week from tomorrow I am scheduled for yet another infusion of DS-1062a.

Yesterday morning I began my book FOR REAL. I am nudging myself into a schedule—art studio in the a.m. (while it’s still cool) and writing the rest of the day, with some walking, exercise, and meal preparation in the mix.

There is a freight elevator in the old mill where my studio is located, but I choose instead to walk up the four flights of stairs daily. I am working on becoming stronger, and those steps are an opportunity.

I am also starting to be out and about more–even going to some thrift stores. Of course I wear my mask and am careful about hand cleaning, but I refuse to remain a hermit for the next year or two. I need to be social, if only in a limited fashion. In fact, this weekend I shall be meeting two of my kids in the Boston Common for dinner—the first time we’ve been together in months. It took some convincing on my part (that it was ok) but again, one has to weigh the benefits against the risk.

Two months ago I didn’t think I’d be feeling as hopeful as I am right now–I came awfully close to saying uncle. The trick was finding the correct antidote to the side effects of treatment. A workable balance between the quality and the quantity.

Up and up

Big day yesterday with labs, eye exam and scans. And the good news is, stability abounds.

However, my mouth sores are back albeit in a milder version of themselves. However, the fact that they are there at all means that we will be pushing back infusion by two weeks again.

Woohoo! I feel like I just won a trip to Tahiti! Well, almost. How to celebrate? Go back to bed? Stay up and get shit done? Have an early morning cocktail?

All equally appealing but I’m gonna go with door number two. The day is long and there is always time yet for one and three. In fact, almost guaranteed that I shall pay them a visit.

Living large in the time of pandemic.

xoxoxo

Upright citizen

I was interviewed for a story about COVID-19 and cancer some weeks ago and it has been picked up by PEOPLE.com. Give it a quick read.

Better yet, one of my life long dreams came true in November—I was made the member of a board and not just any board, but rather the Israel Cancer Research Fund. It has been both an honor and a pleasure, as I get to work closely with a fabulous team as well as one of my favorite people on earth, Rob Densen.

Last week I had an opportunity to be interviewed by Rob for the ICRF ongoing webinar series, Brilliant Minds. It’s not too late should you like to register to hear this presentation which will be aired tomorrow, 6/24:

https://www.icrf.ca/icrf-presents-brilliant-minds-a-monthly-webinar-series/

It’s going to be a busy day, as I am presenting as part of Thermo Fisher’s Innovation Day in the morning, and then will be part of a forum for clinical trial advocates with Pfizer later in the day. And in between the two activities I shall squeeze in a zoom appointment with a psychiatrist. Just keeping it real, y’all.

Hopefully I’ll have time in the evening to get to the studio, as I purchased two hollow core doors to make tables with. When I work I like to work large (lots of projects at once) and I’m itching to get to it.

So, cancer, depression and pandemic be damned, I am finding a way to keep moving—forward.

I believe I shared that when I was first diagnosed I decided that no one had died from lung cancer while upright (technically not true, but it’s an aspirational image). And I intend to be an upright citizen for as long as possible.

xo

Down and up date

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).

xo

This crazy life of mine

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.

So–onward.

The anxiety

It’s Tuesday. Although my mucositis is much improved I still have sores in my mouth and esophagus–almost five weeks after my last infusion.

I am scheduled for my fifth infusion on Thursday. However Dr. Lin called me this morning and it pushing it back another week–fortunately the trial allows for up to a four week delay.

Do I go for one more? Maybe even two? Wait until my next scan to decide?

Damn this is difficult.

My mood is so very improved and I suspect there is a direct relationship between positivity/motivation and feeling better. I am decidedly anxious that if I get another infusion, it will not only be my mouth that starts hurting again.

So I don’t know. My higher morale has also been correlative with a greater desire to survive. And the difficulty with clinical trials as they currently exist is that as a participant I am given very little latitude. Should I drop out there is no returning.

Chances are I’m going with infusion, simply because it places me in a position of greater options. But psychologically, this is a tough one.

I’m so very relieved that I have another week to think and hopefully heal.

OUT

I have been an out atheist since my late teens. Not a casual decision; hell, my first crush was on Jesus—that handsome man with long brown hair and a beard as depicted on the little print I received as a prize in Sunday School after memorizing the Lord’s Prayer.

No. I gave religion a lot of thought and ultimately simply could not suspend my disbelief.

Back then I was in the minority, or at least seemingly so. If others questioned their belief in God they kept it to themselves, something I never felt obligated to do.

Through the years there have been both multiple and in at least one case, ongoing campaigns to convert me. And….not gonna happen.

My atheism is not nothing–it is my own well thought out belief system. Although some would argue to the contrary, atheism is not synonymous with amorality. I have a strong moral compass, one that is dictated not by rules but rather by what is right. And being atheist certainly doesn’t mean I ‘hate’ God, something I was recently accused of. I also don’t believe in unicorns, but that doesn’t mean I hate unicorns.

Many if not most of my friends subscribe to one organized religion or another and I have always been respectful of their belief system. Unfortunately, the respect has not always gone both ways.

For the most part I have been extremely tolerant. I understand that when someone is trying to convert me they feel they are doing me a favor. But, you are not. I’m good here; happy atheist if you will.

A week ago a family member sent me a card. They acknowledged how hard I have fought to stay alive: ‘most people would have given up years ago.’ But that was followed with this piece of advice; ‘Perhaps God is waiting for you to choose eternal life with Him.’

I cried. And then I drank too much.

The next morning I made some decisions. No more Ms Nice Guy when I am being blatantly disrespected.

Fortunately, reverse psychology often works for me. Case in point, in junior high my band teacher told me I would never master my instrument (a flute) because I had a cupid’s bow on my upper lip. Well damned if this girl didn’t go on to sit in first chair in both band and orchestra. If you tell me I can’t, I likely will.

But if you try to get me to do something that is in conflict with my personal beliefs, well, don’t even. I am open minded but I am not malleable.

And if there is a God, well they (I simply can’t gender something like God) are going to have to wait. I am in no hurry to find out if I am right or wrong.

None whatsoever.

xo