Tuesday, October 28, 2008

I'm Here....on the roof

Contemplating jumping but with the way things have been going I would survive but need every imaginable, non insurance covered test ever known to man. And it would hurt. We saw uber super doc last week and really came away with more questions than answers. He was a very academic type, really no personality to speak of, you could actually see his little wheels turning in his head, he never really answered a question but drifted off to other things that created more questions. When we left there for our 2 1/2 hour drive home BigD and I were so numb and confused along with disappointed that we barely spoke. It has taken me a few days of thinking to decide if I want to go back there. This physician is EXTREMELY well regarded in the medical world, it was a minor coup to be led into his kingdom after only waiting 2 weeks, (one of which he was circling the globe spreading his knowledge with lesser doctor beings). He has an air of superiority that I could have done without, he never sat for a second rather choosing to dominate his space lording over us mortals, while wearing a rather dapper $1000+ suit, probably hand made on his last trip, and gave off the definite vibe that we were lucky to be there. Maybe we were, but maybe we weren't. He spared no time in telling us that for the most part he felt that the CT, CT guided lung biopsy, and subsequent PET scan were all done in facilities that don't have the state of the art equipment that they have at his university. Ok, they probably are not the latest and greatest but they serve many many people and I would imagine meet whatever state requirement they need to meet. He went on to tell us that while the pathology report was negative for cancer, and the PET didn't light up like a Christmas tree, that it is still possible that BigD has the BigC. He wants to repeat the PET in HIS department to see if it differs from the PET done here at home. He is thinking that if this should show a change in mass size, (ie:smaller than original then it could be infection, or a couple of other things instead of a 4 cm solid mass) MY thinking is that two different machines with two different radiologists would quite possibly come up with different opinions and we still wouldn't know for sure if it was changing in size. He actually seemed upset that he was (as he put it) "perplexed that none of these indicators seemed to represent a definite cancer" as his thinking is that is still might be. He said he had no idea if the mass was related to the asbestos plaques that are scattered about BigD's lungs but that if in fact the mass didn't decrease in size, the mass needed to come out. He said NO physician would ever leave a 4 cm mass inside someones lung. As a side note this mass is also pressing on or possibly attached to BigD's diaphragm (I had one of those once, I kept it in the nightstand.) So I have no idea if we are talking about two different surgeries or one, or what the ramifications of this are since he was too distracted to answer my question. He also said this HAD to be done within 2 weeks because waiting any longer was not an option. The original PET was in the neighborhood of $6000 and insurance will not cover a second one..and only partly covered the first,,I still can't get an answer from uber super doc about why they can't just peek in there (they have scopes for this type of thing doc..)and see what they are dealing with. I understand that docs are comfortable with their own cronies interpretation of results and all of that, I really do understand as I am one of those people that would rather do something myself to be sure it is done right but at $6000 a pop is it really necessary? So, people talk me down from the roof. I really want your opinions. If any of you are doctor type people, feel free to leave a comment...no medical advice because I know that is not allowed, I know, but feel free to even leave it anonymously. As of right now, my thought is to find another uber super doc, closer to home (we are located closer to Cleveland than Pittsburgh) and start all over again. Crap. (as if this wasn't enough, S1 called this morning and told me that he has been keeping from me the fact that he has been hearing voices and becoming more depressed again and wants to restart his medications that he was weaned from a couple of mos ago. I love this kid more than life itself and it breaks my heart that he has to suffer AT ALL and then not want to burden me with it. He actually said "don't get all mom like and worry, I am fine, but it would be better if I straightened this out". Will this kid ever have any idea how much I love him?!) On second thought I might sit up on this roof for awhile....at least till the wind and DAMN cold rain/snow mix makes me crazier!


Deathstar said...

Don't you just love it when doctors can't be bothered to speak in plain English? Cause then they run the risk of actually communicating a clear thought that might come back and bite them in the ass. Anyhoo, I am so sorry you had to come home with no clear and easy answer as to what to do. It just sucks to have money be such an issue in taking care of your health. Given the seriousness of your situation, you just need a medical report, not a great bedside manner. I think you do need some medical guidance in deciding what to do next. One that you can trust and feel good about. Try Teendoc at http://lianaandmason.com/dollhouse/

You need help. Ask for it. Good luck. I wish I could do more.

Deathstar said...

Oh, and your son is doing the right thing on going back on medication. He's good to keep in touch with you.


Tina said...

Oh my friend, I feel so bad for you. I wish I had some solid advice. Well, the only advice I can give you is MOVE IN WITH ME. All these procedures are covered up here. And as for your son? Sounds like he has a great head on his shoulders. I hope my boys grow up like yours and love me as much as yours obviously do.

Aurelia said...

Ouch, that is a lot of money. Can you find another Doc who might be able to find it cheaper or get you in a study that will pay for it? Unfortunately, you might need to redo it, since different machines and different Docs really can vary in quality and clarity.

I'm so sorry about this.

beagle said...

Don't you sometimes just feel like saying "just cut to the chase already!"

I wish I were there keeping you company on the roof. N. is blowing you some cheerful rasberries.


Jerry said...

You know I am a current cancer patient; I still go to the hospital every 3 months for bloodwork. I know what you are feeling.

Here are my 2 pieces of advice:
1. Come down from the roof. Your husband and you need one another. You need each other's shoulder to cry on and to make each other laugh and to talk things through. Cry together, but do not allow yourselves to drift apart and stop communicating. It is important for your individual sanities (I don't know if "santies" is a word; it's plural of one "sanity").
2. Trust in a good doctor is VITALLY important. You are putting his life in the doctor's hands. If you don't like the guy you just dealt with, dump him. Find another high-quality, well-respected doc. Ask around, check the Internet; you'll find someone you love who is just as good and closer to home.
3. I would love to comment on the money issue, but I do not know you or your financial situation. If you want to email me, we can talk further.
Bonus advice: Have faith!


hope548 said...

I cannot imagine how wracked with worry you must be and how frustrated that you can't get a straight answer. I understand they don't want to diagnose without collecting all the facts themselves. I think you should find a doctor that you feel very comfortable with and just go with them. I hope you get some answers soon! You and BigD are heavy on my heart.

Jade said...

Wow, you and I both picked pretty loaded first posts to read eh? I wish I was a doctor so that I could lend you some solid advice, unfortunately I'm only a MSW (Masters In Social Work) So with that I say...STAY OFF THE ROOF! lol What you're dealing with with "BigD" and your son must feel like a million pounds on your shoulders, but...they need you. Both do. Both are scared, as are you, so at this time you guys need to pull together. Time will give you the answers you need to proceed properly with both of the men in your life. In the mean time I say write away, talk away do all that you can so that you don't bottle up everything you're faced with. That could lead to a whole different group of issues that you don't need right now.
Thanks for visiting my area of the bloggersphere. I will be back to visit!