Okay, here's the scoopy-doopy on Cindi o'h Cancer related.

[cindi o'h]

Gang.

I posted regarding my move. A little about it anyway. Truth is, it was very hard on me, physically. Emotionally, I have been so ready to move on for a very long time. I have no regrets (except not being able to do it sooner).

I was wrestling with boxes and bags and just moving my body from room to room let alone from floor to floor in the house that I left. I was huffing and puffing and feeling quite terrible. I was under pressure from the new homeowners to GET OUT and I was driving myself to the brink of death just to push a flippin' broom across the floor. (I was getting quite irritated with their constant harrassment and was considering painting the built- in oak buffet a beautiful white enamel as a welcome home/move-in kind of gift just for them! )

Thursday was my 4month CT. Friday to see the doc. Hardly gave it any thought as I was overwhelmed already with all I had in-front-of me.

I showed for my app't. The doc was running behind on his schedule. He popped his head in and told me so. Then he came back after a bit.. and says "Today is a very important appointment. There is something that showed up on the CT scan... a very large peri-pleural effusion and maybe some Cancer." Then he said he was going to call the lung surgeon for a consult and no radiologist intervention thoracentesis this time either. He said you are going to have a VATS to see what is in there and get that fluid off. And that is it. He was very authoratative and demanding. Not open for discussion at all.

I know he was in a hurry. And he is from Eastern Block country so not the same Minnesota nice language. I like to have things explained so that I understand. I like to see the radiographs, read the radiologist's notes, so that it sinks in. I am a slow learner, but a good learner.

I have met with this surgeon before. I like him a whole lot. Last Fall, I had a very similar scenario...a moderate effusion that the oncologist demanded a VATS. The surgeon and I both decided not to proceed with the VATS because it is major surgery and we both agreed that there wasn't enough evidence to warrant it. Besides, I had just had a stent placed and was risky for bleeding and would have had to stop my plavix for the VATS which may have compromised my stent success. My oncologist did not seem to appreciate that the surgeon and I were thinking along different lines than him. I would definitely say I got yelled at. And I think the surgeon probably got yelled at too. However, when I had re-CT a month later, the effusion had resolved from medium size to small. The onc. was quite surprised and warned me that I just got lucky this time.

Again. In Feb., I was in the hospital with chest symptoms and a moderate effusion showed. The pulmonologist said we should get it drained. By the time we were set up for the thoracentesis, it again had resolved on its own to non-existance. So I accepted the fact that I have these strange peri-plerual effusions that come and go.

This time, however, there is an effusion (large) and an opacity of unknown origin on my CT scan. Onc. thinks it is cancer. Surgeon nicely said that it may be cancer, but, it may also be my lung folding in on itself or getting squished from all this fluid that is in there. He didn't seem to want to commit to doing the VATS or not. I had it with my onc.'s haughty attitude and lack of explanation/communication so I was like..."no way...NO VATS"

It is probably the lung getting squished since I have a history of transient effusions. And that the lung is getting squished makes good sense to me.

I think I may have suggested we re-CT in another month. I asked the surgeon if it is recurrence, what harm in waiting. None, he said.

Over the weekend, I have been sleeping and sleeping and not too shook up over all of this. But, I re-think about the appointment and wish I would have had a second set of ears this time. I do feel chest pressure. I am terribly short of breath. And now I am thinking that I should at least get that fluid drained if it is causing my lung to get "squished". I forgot to ask him if that squished lung appearance would be permanent. And I forgot to ask him if for any reason it was emergent.

My pulmonologist is not available at all this week, so her trusted voice is out. All I have is my inner voice telling me that there is not cancer returning.

Also, I called the two doctors today. Well, actually, their nurses...you know how it is. They say that they will talk to the doc. And then call me back. Haven't heard back from them, though.

The good part is that the onc. Nurse Practitioner ordered an activity O2 sat that did reveal low enough for medicare to pay for home oxygen. Also, was put on to a wheelie walker. So. I may be able to unpack all of these dang boxes now.

But, I have some decisions to make. What do you all make of this? Would you go ahead and get cut into over a little white area that may be a squished lung or may be recurrence? Remember, I have been "clean" for 30 months. Or would you wait a month and see? Help, huh?

I will gratefully take any and all ideas/ comments.

Thanks.

Cindi o'h

[Snowflake]

Cindi,

I would wrestle with myself over it and can't tell you which side would win. You have a trusted doctor on either side and the monsters in your brain have broken out of their cells... Damn that self-doubt...

Call the nurses again in the morning. If you are POSITIVE that a month will make no difference if it IS cancer, I'd probably wait it out. But then again - I ALWAYS bite the Tootsie Pop and I KNOW what's in the center.

Weigh both sides, get the expert opinions and make your choice.

Good luck!

Becky

[Kasey]

Any possibility of getting another opinion?? What a spot to be in. Sometimes the right thing is to follow your gut, but I don't know.

Praying for the right decision.

Kasey

[ginnyde]

Cindi, could an interim solution be to wait for your 'trusted' pulmonologist to return. Isn't that 1 week instead of 1 month?

Don't overdo on the boxes, they will wait for you. I truly hope that this resolves itselt as before.

[tnmynatt]

Cindi,

I like Ginny's idea, if it is possible. Praying for you. Take it easy and take care.

[J.C.]

Cindi,

Ginny is right, next week your trusted

pulmonologist is back, so you could go

see her and get her opinion.

Sorry. don't know a thing about effusion

so can't help with your question.

JUST SENDING YOU THE STRONGEST VIBES I CAN.

Love

J.C.

[Maryanne]

Cind,

Maybe with your history of having a stent, moderate asthama, hypothyroidism and everything else, with this move and all you have done, I would think you would be more SOB than usual.

I mean you were up and down stairs, lifting G-d knows what... I am sure that you completely overdid it. That may be the heaviness you feel in your chest, is just pure exhaustion.

I had my daugthers 30th birthday yesterday (my baby turned 30) I made a barbacue for 35 people. Joel did what he could but he was too weak to do anything really physical, so I did almost everything, while he enterained by talking to our guests. I was the one, who did all the preparations, ran around to get the balloons and party stuff, food, made the pasta salad, potato salad etc. regular salad, decorated, set everything up, barbacued and cleaned up. I had some help, but really I did most.

I woke up today and felt so exhausted that I did not go to work. And I am very healthy, so I could imagine how you would feel. You are okay as you are doing things, but it catches up to you later on. I could just imagine how you would feel. Up the stairs, down the stairs, packing boxes etc. I know you overdid it.

As far as the VATS, I would take Ginnys advice and wait till your pulmonary doctor returns and she what she thinks. She will not be gone too much longer, I do not feel that will make a difference.

But again, this is your decision.

Also, young lady, please take it easy and just do a couple of boxes a day, when you feel up to it. Some days if you are just to tired, just leave it, it is not going anywhere and either are you. Unless to the ER for doing too much!! We don't want that at all, period. Eventually, you will get it all done.

Of course, I know you will keep us posted as far as your decision along with updates on how you are feeling.

Take care my friend, glad you are back, miss ya much.

Miss the bar too, but mostly you

Maryanne

[Patkid]

Dear friend,

We are praying for a guiding light for you........All we can offer is moral support and loving concern.

We have entrusted you to the care of Our Lord.

Love

Brat

[rogfam]

Thank you for the update!

I'm praying for you. I always feel we come away from the doc more questions than answers, in general. It's like while you're in there, you're trying so hard to absorb what they're saying, then you get out the door and have so many questions about it all! They don't give enought time sometimes, ya know?

you take it easy and take care of yourself!

((hugs)) and prayers!

Christy

[Wendy]

Welcome Back! Geez, talk about the roller coaster ride. Boy this is a hard decision to make. I know that you have been struggling and feeling crappy for the last few months. I agree with the others, if you are comfortable, wait to talk to the pulmo doc for her opinion.

BUT.............if you start feeling worse go back to the onc. NOW. Sometimes reexamining what is going on sooner rather than later will put your mind at ease. Even if you just need to go back in to talk may help you understand the situation that was delivered so poorly by the rushed doc. They sometimes forget they deliver info to us and it gets communicated the wrong way. Lil' buggers just don't get it sometimes On the plus side, you have one of the best doc's in the area on your team.

In any case, I hope you get some resolution soon. Its time to get you back on your feet!

Wendy

[Fay A.]

Cindi,

My "gut" is telling me that if your SOB increases the tiniest little bit you should head to the ER for draining. I know what those things feel like, and I also know that the fluid levels can increase with very little warning. Will be keeping my fingers crossed that you are okay no matter what you decide.

PS I'm glad you're back, and mostly concerned with keeping you here.

[Remembering Dave]

I have to agree with Fay. If you start feeling worse and the SOB increases, any, then get yo' butt to the draining table. I sat on my tusch today and did absolutely nothing while everybody was packing up the Suburban for trips to storage. You hang in there and I hope and pray that you will be able to get some rest and get some strength back.

David C

[Nushka]

Cin,

I have no experience with effusions but from what you have said you may have to leave off your plavix for a day or two before they can drain? Is that right? If it is, I would make that appointment with the Pul asap and call your internist or cardiologist about the drug. Be ready in case you must have it done. If you get any more SOB, go to the ER.

I also think that you are doing way too much by yourself. If you can eat, sleep and get on the computer without opening any more boxes, then leave them til you feel like unpacking them. You are way too important to push yourself.

You are always in my prayers but I will make sure I mention your decision making conflict and hope that you "know" what to do soon.

Nina

[karenl]

Hi Cindi

Sorry to hear things aren't too rosey for you right now. Hard to know what is the best thing to do....I like the idea of getting your pulmonologist's take on things before committing one way or the other.

I'm with you though, I don't think its cancer either .

All the best with whatever you decide.

Karen

[Haylee_38]

Cindi, Have no answers but know you are in my daily thoughts and prayers. Haylee

[richinsdakota]

Yea, drop the boxes, live out of em till you get thru this. Concentrate of you, finding out what is going on...getting in touch with your pul. doc, etc. if u can wait. But Id be ready to hit the ER fast, if things get worse. Like do you have a ride lined up for that?..etc.

Meantime, take it easy, girl...spend time where u are more comfy, less SOB, like the couch, with phone...? Take care and good luck...Rich B.

[dadstimeon]

Sorry to hear that Cindi. Prayers things will work out for the best as always. Rich

[shineladysue]

Cindi,

I wish I had answers, I wish I could help you and I hate to think of you being there all alone in this situation. I'm so sorry about all the latest scary information the docs have given you and I'd call early today and insist they get back to you (if they didn't yesterday) and at least give you an answer to your questions. You know yourself best. If you feel that the pressure in your chest and your breathing is an emergency then follow your instincts and have your doctors take care of it or head to the Er . If you feel it's not an emergency, I agree with waiting for your pulmonologist to help you decide where to go from here. It sounds like you are really in need of her opinion . In the meantime, only take out of the boxes what you have to have for now. Better yet, get someone to help you. Maybe you could hire a kid to help.

In the meantime, you have my prayers. Let us know how you are. Keep in touch.

Love,

Sue

[lindseysmom]

Hi Cindi,

Sorry to read you are having trouble. I think I would at least have it drained. But you need to do what is best for you.

Best Wishes,

Dee

[Addie]

Aw, Cin....I wish you had better news...but then again, much seems up in the air yet. I'm with Ginny....call your pulmonary doc and make an appointment for sooner, rather than later. Go from there.

But Fay's advice is good too...that if symptoms increase, don't wait for anything....get yourself seen.

As for finishing the move or unpacking....that's low on the list. Take it slow. Unpack what you need first...and let the rest wait.

I have no experience either with effusions...so cannot help you there...but you know you always have my best wishes and thoughts...and I'm hoping you'll get in to see your pul. doc as soon as she is back...as that might tip things in one direction or the other, to have her trusted opinion!

Keep us posted hon...and siddown and put those feet up for a bit will ya? Ya need a rest, already!

[Justakid]

I ditto Fay and Dave.

I worry about you! Hang in there!

[TAnn]

Cindi,

I haven't been online as much lately and I am so sorry I missed your post. As someone who has suffered from pleural effusions since diagnosis, I think I might be of some help, or at least a source of information.

First of all, why are they not willing to do a thoracentesis? Seems like the logical first step, given your background of effusions resolving themselves.

2nd - If you "let it go", you may have more trouble than you bargained for. I did this, "let it go" and the fluid totally encased my lung. They couldn't get a good view of my lung because it was "squished" like yours, so it was very hard to diagnose progression or shrinkage. If the fluid stays too long, there is a condition called "trapped lung" where they can no longer remove the fluid and your lung basically collapses from the pressure of the fluid. I have this condition on the lower portion of my right lung. (This is also where most of my pain is coming from)

Now remember when I had that Denver Catheter??? Well it did a good job of removing the fluid, for a year now, but it is NO FUN. Ask your doc, or pulmonologist about a thorancentesis, ask how much fluid there is, ie: 1/2 way up your lung, to the top of your lung, just the lower part of your lung?????, you see the picture. (Or maybe you should see the picture - x-ray or ct scan)

I hope this gives you some valueable information and doesn't scare you. Please let me know if I can be of any help. Don't wait too long to deal with this. VATS may be too invasive to go through if they can get the fluid with just draining. I guess your doc just wants to resolve the effusion issue all together.

Put that box down! Get yourself in order before you worry about the house!

Let me hear from you,

Teri

[cindi o'h]

Thanks, All.

I got a message from the surgeon's nurse that the thoracentesis is scheduled for next Tuesday. I have resolved to have at least the thoracentesis, but I continue to be plagued with lots of questions for him. I like his new nurse. I left a message with some of my questions. She said that she will email him and have him call me with anything that he can help with.

I saw the effusion on the CT. It is huge.. in the lying down position (of course) it takes of half the former lung space at the largest point. I have seen all the other effusions on the CT scans as well and this one far outweighs any others.

I have a peak flow meter at home that I will remember to check sometimes. I cannot get it to go past 200 liters/min. My usual range is 350-450. I am kind of nervous about this and would love to talk with the pulm if she were around.

And, yes, T, I will rely on your experiences and understanding for help with this one. Thanks a bunch. And thanks to all of you for your responses, care, concern, wisdom, and prayers. You are the best friends ever.

Cindi o'h

[TAnn]

Cindi,

Ok, good. I'm glad to hear they are doing the draining first. Hopefully you will have no problems with the procedure, most people don't. Take it easy until you get it done, you will feel so much better and have more energy when it's done.

TAnn

[David P]

Hey Cindi.

Hope everything turns out OK. Take care.

David P.