I am not dead yet.

[murielm99]

Things were going great. The radiation oncologist who was in charge of the stereotactic radiation was pleased. The tumor was small and almost gone. It was probably dead tissue. He had moved my appointments to every six months.

I asked him about the small amount of blood in my sputum. He told me to speak to my pulmonologist, who would probably tell me there was nothing to worry about. Instead, she got all up in arms and scheduled a THIRD bronchoscopy for me. For the first time, I was frightened before the procedure. I woke up sick, running a temp, a mess. She offered to keep me overnight. I declined. I wanted go home.I had bounced back from the first two with none of this.

She said there was blood behind and under the disappearing tumor that everyone was pleased to see leaving my life.

I went home. The next thing I knew, the hospital was calling me because my left lung was filling with fluid. They tried to get it out, but most of it was too thick. A nice older woman doc explained to me that the body would probably wall that off. In the meantime, the lower part of my left lung does not work.

I had an appointment with my primary, who is great. I told her that I had an appointment with the pulmonologist on the 20th. I would probably ask for a referral from my wonderful cancer center doctors to another pulmonologist. I like and trust the team there. If I have to go outside the practice for this, they will help and support me.

The chemotherapy doctor at the cancer center will be gone for a month. The cancer center has given me an appointment with a locum, who will be there for the regular doc for a month. The two work well together and trust each other. I can't tell you how glad I am that I found this cancer center.

I am not going to sit here and die. If this cancer center that I like and trust does not help me someone else will. I am not going to die without further treatment and without a fight. Heck, I have an acquaintance in my community who is fighting his fourth form of cancer. If he does not give up, neither will I.

I love you guys for all your support and help.

I don't know if any of you have experience with this kind of song and dance, but that is not why I come here. I have plenty of medical advice, I think. Thanks for listening.

[OAITW r.2.0]

1. You've got the right attitude, Murialm99!

We are all rooting for you.

[Scrivener7]

2. I have been wondering how you are. The lung issue is scary, but the rest of it sounds like there is

reason for cautious optimism.

Keep telling us how it is going.

[hlthe2b]

3. If it helps you for us to listen I am more than happy to do so. We want to help and feel helpless, so...

Whatever you need-- there are plenty of us here who want to "circle" around you to provide it. Know that we care.

[3catwoman3]

4. I'm happy to read this spirited post today.

[MOMFUDSKI]

5. Love your spunk!

One foot in front of the other. ONWARD. Have a great day. You are loved here at DU.

[Goddessartist]

6. I'm so happy to hear from you!

And am happy that you are feeling better! Always be hopeful!

Sending you lots of love.

[brer cat]

7. That is the right attitude! I love you, muriel; you are an inspiration to us all.

[William769]

8. I have loved your presence here over the years

And I will continue to see your posts for years to come.

[mgardener]

9. Thanks for letting us know

[murielm99]

10. This pulmonologist has very poor ratings.

83% of the reviews give her a one out of five. Those who comment verbally say very negative things. I thought it was just me.

[TwilightZone]

40. Time to find a new pulmonologist, it seems.

Speaking as someone who fought and beat cancer a couple of years ago, having members of your medical team that you are comfortable with and trust is a big part of the battle, particularly on the psychological side.

I hope that your are able to find one who is a much better fit.

[Solly Mack]

11. !

Glad to hear it.

[momta]

12. Stay strong, Murielm99

We're all here for you.

[Trueblue Texan]

13. So glad to hear you are still fighting the good fight, Muriel!

May your days all be joyful and full of healing and light.

[Lonestarblue]

14. Sending you good wishes for successful treatment.

[MiHale]

15. Keep fighting, you're an inspiration...

[tazkcmo]

18. She IS! nt

[Chicagogrl1]

16. Sending you 💕 & hugs

[tazkcmo]

17. Kick some cancer butt!

And forget about taking names!

Good luck and great vibes to you!

[bucolic_frolic]

19. !

[mountain grammy]

20. So encouraging to read this.. I remain

hoping for the best!

[Janeyre]

21. I dont know you but I know you

I've been thinking about you since your last update. I am so happy that you have reached a better fighting spirit.

[niyad]

23. Welcome officially to our DU family.

[Janeyre]

32. Thank you so much. Have

Lurked for many, many years.

[niyad]

33. Glad you decided to come in from the cold.

[LetMyPeopleVote]

49. Welcome to DU

[niyad]

22. Huggggggggs. Holding you in light and love. I am so glad that you have such

a great team working with you to fight this insidious monster. And your team here continues to be here for you as well. Lean as hard as you need.

[virgdem]

24. Happy to hear you are still with us.

Hang in there and keep fighting like hell. You are your own best advocate for the highest level of care you can access. Please continue to keep us posted.

[Warpy]

25. I hope your locum realizes palliative care needs to be started early

You're not dead today. You probably won't be dead next week or next month. Maybe not next year. Palliative care means you won't want to be dead when/if it starts to get really hard. It doesn't mean anyone's writing you off, it means they'll keep you comfortable and with people to talk to about things friends and family can't bear to hear.

We're here and willing to listen and you get to be angry and complain. We get it.

But it aint over until it's over.

[EndlessWire]

26. This is not medical advice.

Have you tried bispecific antibody therapy? You have to account for cytokine release syndrome (CRS). Everything I have read shows promise for this therapy. It is a longer treatment, and you should take all of it.

I support you and pray for the best. You know, if I were a pulmonologist and found out my patient was spitting up blood, I'd do a bronch, too. But, faith in your team is paramount for winning, and I think you are doing the right thing in changing up. It becomes a second opinion, which is always good investigatory technique. The doc should not be offended.

Best of luck to you. You're in it to win it!

[calimary]

27. GOOD!!!

Thanks for keeping us updated on this part of the path you’re on. I’m just one of many folks here who are pulling for you and sending you healing vibes. Please don’t ever forget that. And keep on keeping us posted!

💐

[LetMyPeopleVote]

28. Thank you for keeping us informed

You will remain in my prayers

[onecaliberal]

29. That's the spirit! You are needed around here.

[TNNurse]

30. Make your own decisions about your health!

Some are not able to do that. Hoping for the best possible outcome.

[Cha]

31. 💙Love you, Muriel.. you are such a

beautiful Fighter! 💙

[Wild blueberry]

34. Very good news

You've got spirit! Thank you for letting us know how you are.
May the Force be with you (including us).

[mucifer]

35. Thank you for posting this and I will include you in my Mi Sheberach

[Evolve Dammit]

36. Thanks for the update Muriel. Sounds largely positive, but hopefully the fluid can be dealt with soon.

[Skittles]

37. ...

[summer_in_TX]

38. Still praying for you beating this!

I'm so glad to hear your spirited attitude. FWIW, I get calendar reminders to "pray for Muriel" so I don't get distracted and forgetful.

[IbogaProject]

39. I root for everyone here

But you share a first name with my Mom, so I e been extra concerned for you.

[stage left]

41. You're an inspiration!

Love, light, and lots of hugs,

[JudyM]

42. On your side, muriel... glad you're staying strong, and wishing the best possible news at every turn

[V850i]

43. Yes! Good to hear Muriel !!

Always and forever

[emmacom]

44. God Bless you!

Dear One, May God continue to bless you I Celebrate your fight; I celebrate your Life!
Sadly, I am not so lucky. My 80th birthday present was a diagnosis of adenocarcinoma. That was 14 months ago. My 81st birthday present is the refusal, so far, of the medical profession to try to find a way to treat me before it is too late, which may already be the case.
I have a severe allergy to iodine, which limits the information that present-day scans can provide. Okay. Now add a severe back and neck work injury years ago, including an upper back fracture and curvature and nerve damage to my neck (as well as several herniated disks with progressive nerve damage lower down.) I do have a DNR, but evidently that is not honored when one undergoes surgery. (No, I do not understand that either.) Then add the refusal of the anesthetists to use any means of resuscitation other than chest compression should I stop breathing (which may happen as I must take opioids for pain). The compressions would, however, break ribs and very possibly do further damage my neck and upper spine, leaving me in worse pain, should I live, and in a present-day legal situation in the United States, in which physicians are afraid to provide adequate pain medication to those who are in legitimate need. I would be better off dead. So, I am as yet untreated at all.
I have not stopped pursuing help and there is one surgeon, in a large city over an hour from me, who will at least talk to me--if I can find a way to get there. I no longer drive and have lost my assistant due to severe illness of her own and I have, as yet, been unable to replace her.
I am neither crying nor giving up, If nothing more, perhaps I can move compassion and care for disabled persons ahead one notch. (there is more regarding the lack of care available to me as a disabled person, but I will spare you that here.) So. Please know how very blessed you are! Do not ever give up! Being older is not a reason to be left to die. Neither is a disability. Life is precious for however long it lasts and you are able to do more than just exist.
If you wake in the morning, the rest of the day is a present! I send you love and joy. YOU GO GIRL!

[murielm99]

45. Dear one,

I wish your news was better. Thank you for sharing your situation.

[salin]

46. (((Murielm)))

I am part of this DU chorus singing as loud as we can to let you know how much we care, and with hopes that the vortual energy sent may help catch the attention of the medical team there.

[DownriverDem]

47. Best of luck

Cancer sucks. You seem to have a great team.

[barbtries]

48. Absolutely the right thing to do.

you might just beat this! I so hope you do.



Do not go gentle into that good night.
Rage, rage against the dying of the light.