Been a While

[rdflynnjr]

Hi All,

Since jumping to stage 3B status with recurrent NSCLC last November, I have:

- had seven weeks of chemotherapy and radiation.

- spent one night in the hospital with pneumonia and pulmonary embolisms.

- had four infusions of durvalumab as immunotherapy.

- had a PET scan that showed that the original hyper-metabolic nodules and lymph nodes have responded well to the therapy, BUT new nodules have shown up along with a new adenopathy and large areas of ground glass opacities. ALSO two new hyper-metabolic areas involving bones. One area on the L1 vertebrae and one on the right sacral ala abutting the ileum.

- had an MRI confirming dimensions of the bone lesions, but showing no brain lesions.

- had a biopsy performed on my L1 yesterday. No report from the pathology folks yet.

Most likely, the bone lesions are mets from the NSCLC. If that proves to be true, I am now staring at some dire statistics. If this latest biopsy is inconclusive, we will have to try to get a biopsy of the sacral ala lesion.

So, "here I stand, head in hand", but I won't turn my face to the wall. I will be making those end-of-life decisions. I will also involve my family and friends in living out the rest of my life with vigor. We will cry and we will laugh........cry AND laugh, damn it!

This is my sharing. All of you please share back.

I miss you, SuzieJo.

Rick

[Denzie Moderator Volunteer]

Wow! That’s quite an update. Such mixed results. I’m so sorry it wasn’t better. Put those end of life decisions down on paper. Make those Durable Medical and Financial Powers of Attorney and get them notarized.

Live with vigor. Love unabashedly. Make memories to last a lifetime. Yours and theirs. Write if you find time but family and you first.

[rdflynnjr in reply to Denzie]

Thank you. Hoping you remain NED.

[JanetteR57]

can see why you've not posted in a while - what a roller coaster of treatment, tests and outcomes.... yet your fortitude and spirit shine through your update.... keep living to the best you can despite your own person and the world's strange situation at this time.... take care....

[rdflynnjr in reply to JanetteR57]

You take care too. Thanks.

[Beepers7]

Hi Rick,

You’re a fighter and I know you will continue this battle. Thanks for sharing as it helps all of us. You have SuzieJo with you.

May you find new strength and enjoy some good days going forward. I will keep you in my prayers friend. SteveO

[rdflynnjr in reply to Beepers7]

Prayers are good. Thanks.

[Seaspray298]

I have not met too many people that have had a bone biopsy....OUCH!!! I had my T5 vertebra biopsied back in 2014 which proved my nsclc. At that time I also had spots on 2 ribs and later on the sacrum to the iliac which I had radiated. I had 3 spots on the liver which biopsy proved to be nothing. This is still not a death sentence. I went through chemo and then almost 5 years of immunotherapy which I am still doing. Have had brain radiation twice and a subcarinal lymph node radiated as well. I call it "whacking the mole". I am as active as I can be (have a bad foot) and stay proactive on this journey. Hang in there....you probably have many years left to enjoy! Feel free to PM me anytime.

[rdflynnjr in reply to Seaspray298]

You have been through so much. Your longevity gives us all hope.

Thanks

[Ncpoet]

Rick, I like your spirit! Yes, laugh as much as you can and if you need to cry, that’s OK, too. You have been through a lot, but you sound like you keep on keeping on. Get the “necessary” stuff out of the way and get back to living and loving your family and friends.

Keep us posted on how you are doing. We all miss Susie Jo.

All the best!

Judy

[rdflynnjr in reply to Ncpoet]

I think it is safe to say that all of us here have been through a lot. Let's all keep each other posted on our individual journeys.

Thanks

[Travelhappy]

Thank you for sharing. Keep that fabulous attitude. Sending good vibes your way!!!

[rdflynnjr in reply to Travelhappy]

I'l takes those vibes.

Thanks

[Jenniferroseolson]

Rick, you have been busy! Wow, what an update and so very much to process from one week/day to the next for you. I applaud your comments about not turning your face to the wall. Sadly, one of my close friends died last week (cancer). She received chemotherapy 6 days before she died; it re-energized me to have those conversations again with my loved ones that I do not want to compromise the quality of my life by a definition of “fighting” that I do not believe. Yes, yes, yes, Rick...cry AND laugh. I’ll add you to my prayers for your upcoming results, treatments, and continued beautiful attitude.

PS We late-stage cancer patients already got the memo, but many people are learning through the pandemic that TODAY is the only day we can plan for, and we must put our focus on making today the best one we can. And yes, don’t we all miss SuzieJo reminding us all to do that!

Jennifer

[rdflynnjr in reply to Jenniferroseolson]

I have been questioning what it means to fight the cancer right up to the end. My understanding is that today is all we have for sure. We have to make the best of it.

If I get to the point where I can either choose a treatment that has little chance of success and could very well kill me, or choose to live out what life I have left with friends and family, I know I should choose the latter. That is not giving up, it is a celebration and sharing of what is left of what we've been given.

But we always wonder if we will know when we have hit that decision time.

Prayers right back to you.

Thanks,

Rick

[Ncpoet]

Rick,

You said we should keep each other updated. You may not know this if you have never read any of my previous posts, but here goes:

My husband: He made his decision last October. His lung cancer, stage 4 (considered Agent Orange related) came upon him quickly at the end of August. He had fought a soft tissue sarcoma attached to his kidney in 1993, (also from Agent Orange). Toss in heart disease and diabetes, he wanted to keep fighting like he did before, but unfortunately, his body was tired, and his heart overwhelmed from his first treatment. He felt his decision was made for him, not possible to continue treatment, so we did what we could that last month together. Over 50 years, but we had wanted more! His favorite song, “I Had the Time of My Life,” summed up our time together beautifully.

My turn: I was diagnosed with stage 4 lung cancer in 2013 (non-smoker) and was in treatment for three years. Been cancer-free since 2016. Lungs have stayed clear. Go back in June (?) for my four month’s scan and an MRI of my brain since I had lesions show up on parietal bones of skull less than two years ago. They didn’t see it as cancer then. Just checking to make sure no changes.

So, you have two stories here, same disease, different outcomes. We each have to decide how we handle our journey. I stay positive and upbeat like you.

We both did our end of life planning as a gift to our son.

I would like to see your name remain on the survivor list.

Romans 12:12

Judy

[rdflynnjr in reply to Ncpoet]

Judy,

I like your attitude and your strength. I suspect I would have liked your husband.

Let’s all try to stay on that survivor list.

BTW the pathology report on my biopsy is inconclusive. Will be discussing my next steps with the oncologist tomorrow. I will be compiling my list of questions and comments this evening.

Best wishes,

Rick

[Ncpoet]

Hope all goes well with answers to your questions.

Keep on keeping on!

Judy