Category Archives: Uncategorized

Shout out

A nice article in WebMD about lung cancer blogs. Mine is highlighted, along with those of my friends Janet Freeman Daly and Lisa Goldman. Also mentioned are the mutation specific groups on Facebook.

Janet relates that at one time she kept a list of all the lung cancer blogs, but now there are too many to do so and this is a good thing. I concur. Back when I started my blog (2009) there wasn’t a whole lot out there. It is wonderful to see so many people sharing their experiences.

Although the title of the article refers to the best blogs, I feel the take away is that the best blog is actually the one that clicks for you.

I started mine because the only other blogs I could find at that time were heavily faith inspired and I wanted the world to know that an irreverent atheist had a fighting chance at survival as well. It was also not lost on me that I had access to some cutting edge care, and that if I could share what I had learned, perhaps it could help others as well.

What I never counted on was how much writing a blog would do for me, the author. Or how it would assist me in building community.

Write on!

xo

Utmost vigilance

I feel as if I have taken reasonable precautions since the news of this pandemic first broke. Masked, hands sanitized, avoiding most indoor spaces. Initially, I continued to meet friends for a meal as long as we could dine outside. I would also go hiking or for a walk at the beach, or ride in the car with someone with the windows rolled down.

The riskiest outings I took were likely to thrift stores, but only those that were rigid about mask wearing and six feet of space between customers. Interestingly, those venues have been far less crowded than the grocery store, another place I continued to frequent.

However, I am hunkering down. The newest strain of the COVID-19 virus, first identified in the UK, is much more contagious. My health care providers urged caution, and one of them even gave me a gift certificate to Hello Fresh, one of the meal services that drops recipes and ingredients at your door.

Of concern to me is the fact that I have gotten sick not once but twice in the past few weeks. First the flu and now either strep throat (waiting on a culture) or a virus. Both times I was also tested for COVID and was, fortunately, negative. However, if I can be walking around with a mask and constantly sanitizing my hands and still get sick, I suddenly feel a whole lot more vulnerable.

My studio is a safe space and there is no way to avoid going to the hospital, but aside from that, until that vaccine is ready (my team said it could yet be months), then I am going to be extra, extra careful. And I think you probably should be as well.

xo

Alive and well…again

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.

Yours, in both gratitude and frustration.

Linnea

xo

The numbers are in

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.

xo

Self survival

How did I do it. Emerge intact.

2020 was a beast. 2019 the hellish hors’doeuvre.

Two awful landlords, two impossible moves. Three clinical trials. One full year of infusion and all its attendant side effects with a few unexpected ones thrown in just for fun. A global pandemic. Business partners who (ahem) took financial liberties.

Becoming increasingly breathless, dealing with alopecia as well as mucositis and skin issues, I somehow continued to online date. That was, in retrospect, insanity.

That I have emerged, not only alive, but on the road to some sort of recovery, self esteem alive and well, boy howdy. Implausible. Unlikely as fuck. But, for the record, true. This, I can vouch for.

xo

That dog, those boots, these lungs

Kumo and I just returned from our second walk today, during which I was taking my customary long strides and deep, deep breaths.

Two weeks ago this was not possible. My fitness had declined to the point that it was, frankly, becoming more difficult to move around.

My lungs have been through a hell of a lot. Not once, not twice—again and again over a period of sixteen plus years. And yet, given the opportunity, they are still capable of a good deal of bounce back. This is something I do not take for granted.

Three weeks ago I would have said that it was unlikely I’d be here for next Christmas. Now I am back to measuring time in years versus months.

Isn’t medical research a remarkable thing.

xo

Image

No longer overdrawn

Success confirmed

Although I don’t have actual RECIST measurements back from the trial radiologist, I do have the assessment of my two oncologists. A “Wow, they do look great!” and a “‘Flipping amazing’ just about sums it up.” And then there was my friend Dr. Jack West’s comments from twitter, which I don’t imagine he would object to my sharing:

Yesterday was all about personal celebration, but today I thought about the greater impact. When I entered this trial, I was advised that the best response had been stability. Although that wasn’t going to be good enough, it was what I was going for. Today I confirmed with Dr. Lin that my scans likely represent between a 50% and 70% response. Which is a heck of a departure from stability. I also confirmed that up until yesterday, stability was still the best overall response.

Today I imagined researchers, other cancer patients, and even pharma execs doing the happy dance. This is so much more than a personal victory–a response of this magnitude represents capital H Hope.

So yeah, this a BFD. And I couldn’t be more pleased.

xo

WOOHOO WOOHOO FUCKING WOOHOO

Alright. So I fantasized that my fever last week was burning out the cancer. I imagined it like toasting marshmallows, with that bad part of my lung just crisping away to ash.

WELL, ladies and gentleman, boys and girls, have I got some news for you. I had a scan this morning and it shows fucking reduction! Never, ever, did I expect to see this kind of positive response at this particular juncture. As I read it (the first time!) I even thought for a moment that perhaps it was a mistake–someone else’s radiology report. But no, that’s my cancer they are describing and it is GETTING SMALLER!

Hugs all around!

xo

Two things

One, there are so many ways to be beautiful.

Two, I love almost everyone.