Nice-ness

So life might be bonking me on the head a tad but there’s some mighty fine shit going on as well.

Take my birthday. Child number two, my son August, took his mama to dinner. Sushi boat and Mai Tais. Yummy yummy ice cream. Paid for by my spawn (a term of endearment in our family). Really quite special and a rite of passage for us both.

Aug and Aug’s mom Linnea

And then there’s the Advair situation. My friend Lynda mailed me an inhaler pronto with the promise of another to follow and a whole bunch of other folks offered to send some as well. However, just the other day I received a package from another friend, Ginny, with six of those puppies inside so I am all set. 

She who prefers not to be named (but thank you) set me up with a massage which I’m going to be taking advantage of in the next couple of days and I am STOKED. I’m the sort of person who likes to go to the dentist because it means someone is touching me and there’s been all too little of that going on as of late. If you know what I mean 😉

Got a guardian angel out there as well—who out of discretion will remain unnamed but he’s friends with some of you as well. Several months ago he just went and made a large deposit in my paypal account. A loan to be paid back when I am able. Unbelievably kind, generous, and knowing. Asking for assistance is not easy for me and frankly the only way this could have happened is the way he chose to do it.

I’ve also got some other loose ends to tie up getting rid of my vintage clothing and replacing the floor in my little airstream. Local friends have offered to help me with both. 

A neighbor paid the fee for my key to be replaced when I lost those. Another friend (girlfriend of a friend but now my friend too 😉 ) is keeping me on track with my book. She is just what the doctor ordered—sassy, smart, incredibly organized. Exactly the sort of task master I am in desperate need of.

And of course I have received many, many messages of support and encouragement.

So, as you can see, I am RICH in friends. Almost obscenely wealthy. And there is no form of plenty I would rather have.

But I’ve got this going for me

My birthday card from my son August. (and a photo bomb from Kumo)

Scrappy as hell, y’all. And a persistent terminal optimist.

After writing my last blog, I had to drive into Boston for an ultrasound. Think johnnies, stirrups, probe. No no fun. And yet, as I lay there on the examination table, I kept saying to myself ‘I’m alive, I’m alive, I’m alive.’ And after the procedure, when it took me an hour in rush hour traffic to drive from Chelsea Mass to the Prudential center in Boston (six miles) I kept repeating it as well.

I get down, really down at times. But I don’t stay there.

Sometimes this takes a formidable amount of will. Depression has shadowed me since childhood. To that end I take an antidepressant and have had a standing appointment with the same (wonderful) social worker for a decade now. But the fact is, my life is fertile ground for sorrow and hopelessness both.

Knowing this, I fight back. In little ways, but ways that matter. When people ask me how I am doing I almost always answer ‘great’. When I fill out the patient reported outcome intakes at every oncology appointment, I give quality of life the top score.

I’m painting and writing and, with only some hesitation, planning for the future. I’m even still (and if this isn’t optimism in the face of progression, I don’t know what is) online dating.

So there you go. In two weeks I’ll have a biopsy and thereafter a better idea as to what the plan of attack is. But in the meantime, I’m not twiddling my thumbs.

Just thought you’d want to know 🙂

OTSD

Ongoing Traumatic Stress Disorder.

I have it. There is no way in hell I could not.

Fourteen years of dealing with my own impending mortality. That one, I sort of have a handle on now. Not easy, but understood.

But the others. All the other people I have become so extraordinarily close to and then lost. Dozens. A hundred. More. Goddamn it hurts. And hurts with the knowledge that it is not going to stop–this ongoing loss.

There are reasons why I insist on embracing the battle metaphor. Cancer really is a war and I have been in active duty for far too long now. On the front lines against an enemy that gives no fucks. A relentless, nihilistic, take no prisoners foe.

Alive but with the knowledge that the only option open to me is to keep fighting. Even on days like today when I want nothing more than to have someone hold me close while I simply weep.

I am bent. Bent with grief. Wracked with sobs. Tired. Oh so very tired. But always battling; for me, for them, for all of us.

Rest in peace my friends. Now rest.

Giving Tuesday

S’alright. Shameless (make that proud) pitch for two of my favorite organizations on Giving Tuesday.

First, Camp Kesem. Honestly, I don’t know how my family would cope without Kesem in our lives. This free (yes!) camp for children impacted by a parent’s cancer diagnosis has played such a positive–make that transformative–role in our son Peter’s life.

Peter at Camp as well as a quote from him (Coati is his camp name).

Only seven years old when I was diagnosed with lung cancer, Peter’s childhood had a shadow over it. The summer he turned eleven, we were told I had three to five months left to live and both Peter and I began counseling. Obviously I didn’t die then, but we were all traumatized.

I had to talk Peter into camp and could only hope it would prove to be a positive experience. He came home from his first Camp Kesem MIT (college students from around the country both staff and support chapters) with the assertion that it had been the best week of his life.

Peter continued to be a camper right up until he aged out and now that he is a student at MIT, he is a counselor. His fellow campers and counselors are part of Peter’s extended family–a family that gets what it’s like to grow up with cancer in the house.

Last fall I had my own opportunity to attend ‘camp’ in Peru, as a fellow with A Fresh Chapter. Unlike Peter, I required no urging. However, my experience was every bit as transformative for me as Camp Kesem was for him.

Like Peter, I was surrounded by others who got my experience with no prior explanation required, as each of us had been diagnosed with cancer. For two weeks we worked in the morning as volunteers in the communities surrounding Lima. After lunch we’d sit in a semi circle of comfortable chairs in a large room that overlooked the ocean. Many magical conversations happened in that space and along the way we formed an unbreakable bond. My tribe is now part of my extended family–twenty three people that I love and respect to the moon and back.

So please, on Giving Tuesday, consider supporting one (or both) of these two life changing organizations.

Camp Kesem (Peter Duff’s fundraising page 😉 or A Fresh Chapter. And help spread the gift of healing.

❤

I did it again

Got older, I did. Woke up this morning to the ripe old age of 59. Yup. A feat that not so long ago I thought impossible.

Now I’d be lying if I said it was getting easier, this having of the birthday. Like that throw away phrase ‘just breathe’, what may be easy for some is a hell of a lot harder for others. But I’m determined to keep doing it, for as long as I am able. Possibly longer.

fullsizeoutput_d4d

Yesterday my friends in the lofts threw me a surprise party. Both my sons were in attendance as well and it was a really special treat.

This morning I left my house at 6 am for my annual mammogram. Later today I see the vaginal/vulva specialist to address some uncomfortable side effects potentially related to treatment with perhaps a bit of aging thrown in. Pressed, poked and prodded. The indignities of keeping it all in working condition. But, viewed in another light, a privilege.

I love this body of mine. We’ve been through a lot together with more to come. And the least I can do is to try to take care of it.

To that end, August and I will head to the gym later today. And then this evening we are going out for sushi and perhaps a show. In most respects, just another day. Which is exactly what I wished for/wanted 🙂 .

fullsizeoutput_d49

Holding it together; each other

*A hug is a form of endearment, universal in human communities, in which two or more people put their arms around the neck, back, or waist of one another and hold each other closely. If more than two persons are involved, it is referred to as a group hug.

The origins of the word are unknown but two theories exist. The first is that the verb “hug” (first used in the 1560s) could be related to the Old Norse word hugga, which meant to comfort. The second theory is that the word is related to the German word hegen which means to foster or cherish, and originally meant to enclose with a hedge.[1]

*Thank you Wikipedia 🙂

And I hope all of you felt the power of that group hug just as clearly as I did.

Because really, there is nothing quite like a hug. Akin to the word ok—it doesn’t overpromise. Unlike a kiss, which suggests greater intimacy, a hug can happen anywhere, anytime, and between total strangers. And like ok–it can soothe, calm, provide momentary comfort.

Most importantly, it reaffirms our connection to others, reminding us that we are in fact not alone.

And that’s why it had to be a group hug. I got squeezed but I was squeezing back hard. I know I’m not the only one going through a tough time right now. Lung Cancer is a ruthless disease–those sucky survival stats are not just for show. And even though those of us with a targetable mutation have seen a dramatic increase in five year survival rates, it’s like playing poker. There are a limited number of cards in this deck and once they’ve all been dealt it’s a whole different game.

So, my tribe, my fellow travelers. Let’s hold each other tight.

In serious need of some mojo

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