The hopeful realist: Meet @mamajite

@mamajite: One of the most helpful aspects of Mayo Clinic Connect is learning about the diverse and frequently rare conditions from people have who share their experiences. From what I've learned about this inherited germline EGFR T790M mutationherited lung cancer is that it has shown encoraging outcomes with new treatment. I also find that music can be particularly uplifing when going through challenging times. I'll have to look into that BTS song - I see they're back performing so perhaps I'll be a fan like you!

What resilience, strength, and light! Thank you!

I’ve seen your posts and I’m a newbie to Connect. I was happy to read a little about your life, family, and location. I also live on West Coast (CA). I’ve been to Seattle once and loved it and of course had to buy an original Starbuck’s mug as a coffee lover! I’m also EGFR but L858R. Thanks for helping in Mayo Connect.

@artistrose that's so nice of you to say - thank you! I'm originally from the Bay Area and still a Cali girl at heart. The original Starbucks is a must visit stop for lots of Seattle visitors. If you visit again, I recommend Mukilteo Roasters on Whidbey Island. (They also have an online store.) One of my tumors has the L858R mutation - it has responded really well to Tagrisso. I hope yours will, too!

Thank you for the suggestion! Don’t know when I’ll travel again, but who knows? Glad the Tagrisso helped you and I pray there is more research and positive discoveries for treatment for T790M. 🙏🏻

@mamajite
Like you, I have a love of music that has helped me through some of my dark days. I had opportunity to meet Ms Ruthie Foster when she came through Saint Augustine, opening for Robert Cray. I shared my Merkel Cell Carcinoma story with her and how her music really helped me in my fear.
I am an old soldier and thought myself pretty fearless and unafraid in those days, but cancer was a completely different enemy, one that I had to rely on others (thank God for our great medical providers) to fight. I could not physically fight this enemy, only receive the treatments and wait to see if they were effective.
I am also a man of faith, and her song reminded me not to fear in this life. My father, late in his time with ALS/Lou Gehrig's, also reminded me. We have nothing to fear in this life. Our end is universal, and the hope of eternal life is what sustained him and which Ruthie reminded me of.

Oh you know that
Oh you know that
You know that death came a-knockin' on my mother's door
Singin' "Come on, mother, ain't ya ready to go?"
And my mother stooped down, buckled up her shoes
And she moved on down by the Jordan stream
And then she shout
"Hallelujah! Done, done my duty!
Got on my travelin' shoes"
......
You know when death comes a-knockin' on my front door
Singin' "Come on, sister, ain't ya ready to go?"
I'm gonna stoop right down, buckle up my shoes
And I'll move on down by the Jordan stream
And then I'll shout
"Hallelujah! Done, done my duty!
Got on my travelin' shoes"

@samueljknapp music really is a balm for the soul. I appreciate you sharing how Ruthie Foster's music has helped you. That's a great photo of you two. I'll have to give her a listen! And thank you for your service. 🙏🏻

It is inspiring to experience your positivity and joie de vivre. I'm so glad you have your wonderful husband and your two lovely children.

I remember a dear Uncle and his wife, Mum's sister, vowing in 1997 " to make every day bigger," by living each with optimum appreciation and enjoyment to make every day count.

My Uncle Hedley had been diagnosed with a different cancer(colon) at 47 yrs old. Unfortunately his GP thought his symptoms were something relatively innocuous not warranting an MRI so Hedley lost 8 months of treatment time by the date he was finally scanned. It had metastasised to his lung/s so treatment was palliative only.

Nonetheless they were true to their word. They travelled, including treating themselves to the QE2. Hedley was a travel writer. He loved it, continued to do it for a good proportion of the time he had.

New Years' Eve 1998 remains the best I've ever known ( I'm 58)because we all- family,friends,Aunty Maureen and Hedley - we flew in the face of the illness, revelled, danced, sang without inhibition and just loved every moment in a way that paradoxical though it may be, made it a much more vital, brilliant night than I know would have been the case had we all been well.

I'm so glad any initial prognosis you may have gleaned has been exceeded.
Dad was diagnosed with metastatic lung cancer at 86 in November 2023.

I'll never know if it broke his spirit or not, but within a week of diagnosis his spirit seemed to "rally." I knew from how he held his head up walking into the lounge after fish and chips from his favourite take- away, taking his cup of tea with him to watch Sheffield United play on TV just six days after diagnosis.
(He'd supported them all his life. We're from Sheffield.)
The following day we went to see a palliative consultant. She was very friendly. But she made it clear in front of Dad that she didn't even think he'd even be able to return to the hospital department in three weeks' time. Insisted on going through Respect plans etc.Hed done this at the diagnosis.
Dad had walked to the car for me to take us there. He'd walked in without help. As the consultant kindly but unsubtly kept on in the same vein I saw his shoulders bow, he was hunched over looking down by the last part. Needed help dressing after a blood test and I could hardly get him into the car to go home. He could hardly get out and walk once we got home.

If a patient does not want things to be " spelt out" then a medic shouldn't ignore their wishes.

I've since been told that the many times the "Respect"Agreement was repeated, were not necessary. That it was perhaps a back- covering exercise to protect different medics' positions and is not legally necessary.
I'd thought the hypocratic oath went something like:" First do no harm"?
He was harmed psychologically and emotionally, several times, despite clear requests to stop.
Dad was failed.

He gave up the day he met the palliative consultant.

It caused him profound emotional pain each and every time 4-5 different bodies ( the GP called him in while I was at work. Dad tried to text me as was afraid. He didn't drive again. He was alone that time. The GP did not even ask if he wanted someone there or confirm what the sudden appointment was for(just days after the palliative consultant's kind but unsubtle onslaught.)

And it happened at least thrice more. Even though I asked the palliative nurse to leave it if Dad nodded to confirm no decisions had changed. She said she would, then didn't.

Dad didn't have dementia. He was intelligent. There was no need.

That wasn't acting in his best mental and physical interests.

It seemed selfish and self- interested.

I've been advised since that estimating or predicting time- frames is not an exact science.

Wish there had been the humility and compassion to recognise this and give Dad some hope.

I hope you continue to live life to its fullest for a long time yet.

Dad lived just 35 days after the palliative consultant's appointment.

I apologise to moderators for criticism.

I hope you or your husband will be categorically firm with anyone acting as those meant to be helping Dad did.

Enjoy this and every BTS concert and everything you do.

Thank you for telling us about you and your wonderful family.

hello @safran22 - thank you for sharing you and your family's experiences. I feel how painful it must have been to not have your requests in the best interest of your father honored by his care team. I believe it is absolutely crucial to shine a light on the positives, even when being candid about the possible outcomes or difficult topics like cancer progression. my husband has been terrifically supportive and I can't tell you how much that means during a time that is otherwise quite difficult. including a photo of me and my daughter at our last concert. it was indoor arena so we are wearing our respirators for safety! thanks again for your kind wishes 💓

I love your interview. I have breast cancer and blood mutations, so like you, genetics bring truth. Amazing that another person has your mutation. Wow!! Also, that you have a supportive family and husband and live in one of my favorite places. Washington state, Seattle, Canada so close to the weather and area we have in California.
Thank you for willingness to share your story with all of us and with the lung cancer group. I have a few spots that are being watched.