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murielm99

(31,433 posts)
Thu Dec 14, 2023, 11:18 AM Dec 2023

I am not dead yet.

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.

49 replies = new reply since forum marked as read
Highlight: NoneDon't highlight anything 5 newestHighlight 5 most recent replies
I am not dead yet. (Original Post) murielm99 Dec 2023 OP
You've got the right attitude, Murialm99! OAITW r.2.0 Dec 2023 #1
I have been wondering how you are. The lung issue is scary, but the rest of it sounds like there is Scrivener7 Dec 2023 #2
If it helps you for us to listen I am more than happy to do so. We want to help and feel helpless, so... hlthe2b Dec 2023 #3
I'm happy to read this spirited post today. 3catwoman3 Dec 2023 #4
Love your spunk! MOMFUDSKI Dec 2023 #5
I'm so happy to hear from you! Goddessartist Dec 2023 #6
That is the right attitude! I love you, muriel; you are an inspiration to us all. brer cat Dec 2023 #7
I have loved your presence here over the years William769 Dec 2023 #8
Thanks for letting us know mgardener Dec 2023 #9
This pulmonologist has very poor ratings. murielm99 Dec 2023 #10
Time to find a new pulmonologist, it seems. TwilightZone Dec 2023 #40
! Solly Mack Dec 2023 #11
Stay strong, Murielm99 momta Dec 2023 #12
So glad to hear you are still fighting the good fight, Muriel! Trueblue Texan Dec 2023 #13
Sending you good wishes for successful treatment. Lonestarblue Dec 2023 #14
Keep fighting, you're an inspiration... MiHale Dec 2023 #15
She IS! nt tazkcmo Dec 2023 #18
Sending you 💕 & hugs Chicagogrl1 Dec 2023 #16
Kick some cancer butt! tazkcmo Dec 2023 #17
! bucolic_frolic Dec 2023 #19
So encouraging to read this.. I remain mountain grammy Dec 2023 #20
I dont know you but I know you Janeyre Dec 2023 #21
Welcome officially to our DU family. niyad Dec 2023 #23
Thank you so much. Have Janeyre Dec 2023 #32
Glad you decided to come in from the cold. niyad Dec 2023 #33
Welcome to DU LetMyPeopleVote Dec 2023 #49
Huggggggggs. Holding you in light and love. I am so glad that you have such niyad Dec 2023 #22
Happy to hear you are still with us. virgdem Dec 2023 #24
I hope your locum realizes palliative care needs to be started early Warpy Dec 2023 #25
This is not medical advice. EndlessWire Dec 2023 #26
GOOD!!! calimary Dec 2023 #27
Thank you for keeping us informed LetMyPeopleVote Dec 2023 #28
That's the spirit! You are needed around here. onecaliberal Dec 2023 #29
Make your own decisions about your health! TNNurse Dec 2023 #30
💙Love you, Muriel.. you are such a Cha Dec 2023 #31
Very good news Wild blueberry Dec 2023 #34
Thank you for posting this and I will include you in my Mi Sheberach mucifer Dec 2023 #35
Thanks for the update Muriel. Sounds largely positive, but hopefully the fluid can be dealt with soon. Evolve Dammit Dec 2023 #36
... Skittles Dec 2023 #37
Still praying for you beating this! summer_in_TX Dec 2023 #38
I root for everyone here IbogaProject Dec 2023 #39
You're an inspiration! stage left Dec 2023 #41
On your side, muriel... glad you're staying strong, and wishing the best possible news at every turn JudyM Dec 2023 #42
Yes! Good to hear Muriel !! V850i Dec 2023 #43
God Bless you! emmacom Dec 2023 #44
Dear one, murielm99 Dec 2023 #45
(((Murielm))) salin Dec 2023 #46
Best of luck DownriverDem Dec 2023 #47
Absolutely the right thing to do. barbtries Dec 2023 #48

Scrivener7

(52,724 posts)
2. I have been wondering how you are. The lung issue is scary, but the rest of it sounds like there is
Thu Dec 14, 2023, 11:46 AM
Dec 2023

reason for cautious optimism.

Keep telling us how it is going.

hlthe2b

(106,328 posts)
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...
Thu Dec 14, 2023, 11:48 AM
Dec 2023

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

Goddessartist

(2,067 posts)
6. I'm so happy to hear from you!
Thu Dec 14, 2023, 12:12 PM
Dec 2023

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

Sending you lots of love.

William769

(55,815 posts)
8. I have loved your presence here over the years
Thu Dec 14, 2023, 12:30 PM
Dec 2023

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

murielm99

(31,433 posts)
10. This pulmonologist has very poor ratings.
Thu Dec 14, 2023, 12:37 PM
Dec 2023

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

(28,833 posts)
40. Time to find a new pulmonologist, it seems.
Fri Dec 15, 2023, 12:07 AM
Dec 2023

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.

Trueblue Texan

(2,922 posts)
13. So glad to hear you are still fighting the good fight, Muriel!
Thu Dec 14, 2023, 12:51 PM
Dec 2023

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

Janeyre

(8 posts)
21. I dont know you but I know you
Thu Dec 14, 2023, 01:47 PM
Dec 2023

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

niyad

(119,875 posts)
22. Huggggggggs. Holding you in light and love. I am so glad that you have such
Thu Dec 14, 2023, 01:54 PM
Dec 2023

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

(2,205 posts)
24. Happy to hear you are still with us.
Thu Dec 14, 2023, 01:59 PM
Dec 2023

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

(113,130 posts)
25. I hope your locum realizes palliative care needs to be started early
Thu Dec 14, 2023, 02:09 PM
Dec 2023

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

(7,235 posts)
26. This is not medical advice.
Thu Dec 14, 2023, 02:20 PM
Dec 2023

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

(84,306 posts)
27. GOOD!!!
Thu Dec 14, 2023, 02:39 PM
Dec 2023

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!

💐

TNNurse

(7,121 posts)
30. Make your own decisions about your health!
Thu Dec 14, 2023, 03:43 PM
Dec 2023

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

Wild blueberry

(7,185 posts)
34. Very good news
Thu Dec 14, 2023, 07:11 PM
Dec 2023

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

summer_in_TX

(3,206 posts)
38. Still praying for you beating this!
Thu Dec 14, 2023, 11:18 PM
Dec 2023

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.

JudyM

(29,517 posts)
42. On your side, muriel... glad you're staying strong, and wishing the best possible news at every turn
Fri Dec 15, 2023, 12:39 AM
Dec 2023

emmacom

(25 posts)
44. God Bless you!
Fri Dec 15, 2023, 03:05 AM
Dec 2023

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!

salin

(48,958 posts)
46. (((Murielm)))
Fri Dec 15, 2023, 09:24 AM
Dec 2023

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.

barbtries

(29,760 posts)
48. Absolutely the right thing to do.
Fri Dec 15, 2023, 11:22 AM
Dec 2023

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.

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