New Here...
Hi.
Dx'd with non small cell lung cancer 10/20. Almost to the 5 year clean mark. But had a hiccup. Found a tumor pushing on the brain and had to have it surgically removed. Came out of that okay, but still a smaller tumor close to the cerabellum they could not do surgically.
I was to do followup radiation but they found I was a good canidate for an oral medication, Entrectinib.
Drug makes me 'wobbly', tired, and has destroyed the taste of food. And yesterday I had an endoscopy because something is messed up in my throat and gives a slight challenge while trying to drink my daily dose of 64 oz of water.
I was doing quite well until this surgery. I'm normally up, but this one took my breath away.
Enough pitty party for now. Hope a better day for you all.
Hi
, It didn't sound like a pity party to me. It sounds like someone who has done everything they needed to do and had a setback that they are handling with great grace. I hope there is good news from the endoscopy.
I'm sorry the drug is making you feel unwell. Do you know how well you are responding to it yet? I'm sending you (((hugs))), love and light. Please keep in touch and let us know how you are coming along. - Warmly, Donna (Team Member)Thanks for your kind words.
Scope found no problems.
Do not know yet how I am responding to it. Might be a few weeks yet before I get a scan.
...Craig, you're most welcome and (((hugs))). I'm glad the scope found no problems. Please let us know how the scan goes when you get the results. I'm keeping you lifted and will continue sending love and light. - Warmly, Donna (Team Member) , Hi Craig, I just wanted to check back with you and see how you're doing and if you had the scan yet? - Warmly, Donna (Team Member)
Well isn't that nice of you to reach out to see how I'm doing. Appreciate it.
I'm doing okay today. It's not like that everyday.
I have a fair number of side effects from either the surgery or from the drugs.
I must admit I get discouraged by the side effects. It's enough change in lifestyle that I can see why people say that they have had enough.
When the procedures and/or the drugs change your way of life, it's quite easy to ask yourself. Why bother with all this. You don't feel good enough to do much, and you put a terrible strain on your caregiver/wife, and nothing is the same anymore. So this puts you in a rather precarious position.
I can stop my meds and see if the side effects go away. And that's not off the table yet. But if the side effects didn't go away when no longer taking the meds, it means that the brain surgery is the culprit. And that can't be fixed. And that means you're stuck with the side effects,. And if that's the answer, I'm not so sure. I want to know that.
As a team member, you probably have heard people talk about this many times. But I'm going through it for the first time. Can't say I'm happy to that I've learned something, but I am glad that I've found out something that many people are subjected to. It's a heavy conversation even if it's only with yourself.
Well, thanks again for reaching out. I do appreciate it.
Hope you're having a good day.
... Craig, I do understand. There has been a lot of that going on in our home. I became an amputee 2 years ago, and in December, my partner suffered congestive heart failure, and recently had heart surgery. Especially now, I feel pained that I have to lean on him for things that I always did on my own. But he doesn't care, because he loves me. And I don't care about the things that I have to do for him now. Love can be a beautiful dance of reciprocity, and filling in the gaps for each other. You just have to let go of the guilt (I know, it's hard, and I still fight it sometimes).
I think I would feel like you. IT doesn't matter what caused it, but how can we get around it. Are the side effects something that PT or OT might be able to help with? They may be able to help smooth some of the rough edges, and make the day-to-day a little better.
I agree, and I'm not sure going off your meds would be a good idea. If you are thinking about that strongly, I'd urge you to speak with your doctor deeply.
Yes, we've heard stories, but we've not heard your story <3 Everyone's experience is different, and everyone needs help at some point during the journey. So there is never any worry that we've "heard it before".
I hope the weekend is a good one. - Warmly, Donna (Team Member)
