Small Cell Lung Cancer

I have so many feelings today. My life is equal parts peace and chaos right now.

I am currently one of five caretakers to a dying elder. She’s my friend, adopted mom in Ohio, since my own is in Texas. Technically, she’s my daughter in laws grandmother but my heart doesn’t care or know the difference. She’s family, and I love her.

She was diagnosed with cancer in August of last year. She started hospice last week. Small cell lung cancer which has metastasized to her brain, bones, etc. We thought we were going to lose her last week after she contracted a stomach bug, but she made her way back.

I don’t know if this is her “rally” or if she’s just bouncing back for a rally later down the line. All I know is we don’t have much more time. I just want her to make it to her birthday weekend in ten days, so she can see her sister who’s flying in and be with all her family in the nice weather. That’s my final wish for her.

I’ve never actively been involved in a human’s dying process, but as a widow, I am a close personal friend of death and grief. I’ve had so much practice it’s almost funny. Almost.

I’ve been reading a book by Suzanne O’Brien (former oncology, hospice nurse turned author and creator of Doulagivers Institute) called The Good Death. Hoping it will help support me and help me navigate uncharted territory while offering support to both her and her family. It’s been helpful and eye opening. Practical and comforting.

In the meantime, a friend of mine posted about watching a show (based on a true story) called “Dying for Sex” on Hulu. I actually had it on my playlist to watch. When she posed the questions about sharing what we thought after watching it, that prompted me to bump it up on my watch list.

Last night after a twelve-hour sitting, (while working my regular day job, remotely) I was struggling with winding down. I decided it was a good time to watch the show. Of course I binged it until the wee hours, because it’s that good. Seriously.

This is what I wrote her as my “feedback” about the show.

“I don't know if I even have proper adjectives available to explain the profoundness of this show. The million taboo and raging topics it slashed through or the generations of emotions I am still going through but, Wow! As I am in the middle of taking care of my “Ohio” momma & friend who is currently in hospice with bone cancer, just Wow! I'm healing and being broken and angry and sad and joyful and contracted and expanded all at once. It wasn't a show. It was my life....so many of our lives... crashing together against the stars.” - I will never be the same.

Watch it., so you'll never be the same either. #Cancer #Caregiver #Death #Therapy #Grief

From family planning and relationships, to employment and retirement, living with late-onset rare disease can affect every single touchpoint in a person’s life (much more than others even realize).

But there’s strength in community, so we'd love for you to pay it forward. What’s a piece of advice you can share about your day-to-day experiences with navigating rare disease? What’s helped? What hasn’t?

✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. Your answer may be used in an upcoming editorial story on The Mighty.

#RareDisease #LambertEatonMyasthenicSyndrome #MyastheniaGravis #CheckInWithMe #Spoonie #MentalHealth #LungCancer #SmallCellLungCancer #MuscularDystrophy #IntravenousImmunoglobulin #NeuromuscularDisease

Hi Y’all-
I’m Sara. I’m new here but also not.
I know I haven’t had much opportunity to open up on The Mighty. That said: Simply being able to read and press the ♥️ button has been an INCREDIBLE HELP. THANK YOU FELLOW MIGHTY WARRIORS!

With that in mind- let me jump on into the deep end (I’m talking diving via springboard-nose plugs and all) of the pool.

I absolutely dig the “Favorite Quotes”
Post (?) Pardon-as I learn more Mighty jargon 😉☺️...

Today- I put a quote up in that thread. Total ‘No Holds Barred’ I could think of many a quote- and will probably add more.
But I digress-

The quote that popped into my head is from a band named ‘NoMeansNo’
The quote:
“Nonsense is better than no sense at all.“
From their ‘0+2=1’ Album.

The thing is - the quote has always stuck with me for various reasons-
Recently, however, it’s become emblazoned in my heart 💜 and MIND.

It has become even more special to me b/c My Best friend
(aka- the FAMILY I Choose) of over 25 years passed away not even 1 year ago (2019)
His birthday was March 11. He would’ve been 46 this year.
Now, Myself and Family/ FRamily alike, must get through April.
April will be 1 year of his passing.
I’m a bit all over the place.
Pinging from thought to thought- just as I did as the dancer that I once was...literally Spinning and jumping-
Only now, the landing is tougher.
The spinning doesn’t stop- even if I look at one fixed point in the distance
(as dancers are trained to do so that we don’t fall over).

Lately I’ve been more like a ‘Weeble - Wobble’. Remember those?
That succinct tag line:
“Weebles Wobble BUT they don’t fall down!”

Ok, Now I’m ‘dating myself in time’ and I can hear the echo of his (my friend’s) laughter just from me writing about Weeble Wobbles... 🤷🏻‍♀️ Oy.

With all the Chronic illnesses that have been w/me since birth + The Cancer I got through + the Cancer’s Aftermath and NOW new Neurology issues -(That list is long enough for this moment) -

Putting all that aside
I can only say: In MY personal experience- My 42 years of this crap-

I am used to being the one who survives in this Intoxicatingly Beautiful Tragic yet Wondrous Life.

I’m not complaining -ok maybe a lil bit- but it does beg the question: “Why me?”

Not exactly “Why is this happening to me?!” Although those days do happen. Y’all know! We all get them 🙃

Rather: “Why Me?”
As in “Why am I still here?”
Watching people who have had the same or similar experiences, illness or issues fade away. . . 🧚‍♂️
“Why am I still here?”
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#introduction
#CheckInWithMe #MightyTogether #CPTSD #SurvivorsGuilt #SexualViolenceSurvivors #IllnessAnxietyDisorder
#non-SmallCellLungCancer #MixedConnectiveTissueDiseaseMCTD #Migraines #Goodgrief #weebleswobble #Neuropathy #ImmuneDeficiency