Quick Update: 5/9, updated 5/14

Two weeks ago, my Blue Cross Medicare provider, assigned me a home nurse.  She visited me a week ago, and spent 2 hours with me, mostly amassing my huge medical history, so she could figure out the best way to help me.  I didn't even know they provided such a thing.  No, I don't need a nurse at home, I can still take 100% care of myself.

She is acting like a liaison between all my doctors, including the VA.  For the record, she finds overall, the VA to provide horrendous services.  But that is her opinion.

In just a week's time, she got the ok from my oncologist, for me to see an independent pain clinic in Spartanburg, just for an accessment and second opinion.  She strongly feels that my pain is not being properly controlled.  I told her to tread carefully, as I do not want to mess up my long time relationship with my oncologist.  Based on her follow up with my phone, she has done well without stirring up any feathers.

She believes (I do not) that I have some kind of hidden PTSD issue going on.  She is basing that on the 2 hours she met with me.  She thinks at some point, it needs to be dealt with.

She is also suggesting that I be put on Marinol.  Said it would help with the neurological pain and also force me to have an appetite.

She doesn't understand why my rapid and unplanned weight loss is not a concern to any of my doctors.  I am nearing the 50 lb. mark just since January 1.  In the past 5 days, I have lost 6 more pounds, and is with me eating at least 2 meals per day, and even over eating some sweets.  It doesn't even seem possible.

I now weigh less then when my oldest was born in 1977, and I am within 1 pants size of wearing what I wore when I was 21 years old.

Next Tuesday, I meet with the VA dental team again, to hopefully have a full game plan, and surgery schedule in place for all my crumbling teeth.

Haven't been feeling or doing well lately.  Did take a RV trip to a local lake last weekend, it was fun on one hand, but still so physically taxing on me.

That's about it.

D.

 

Post Edited (Purgatory) : 5/14/2014 8:54:28 PM (GMT-6)

The troubles don´t stop, it seems, but some more help coming your way. Hope the end-balance is always in your favor. Good luck with the VA dental team plans..you know that doctors recommend all tooth work be properly taken care of before starting Zometa (not that you need it, but you may in the future). Very important. Take care David.

David, I hope the nurse's involvement can lead to some positive results. You sure can use a break.

Dave/Purg,
I'm sorry that I lost tract of where you were at in your complicated journey. It was my understanding that you were to travel to see experts (VA or not?). Has the VA determined what is the prognosis and what to do? I can't believe that they just dropped you!! Hope that the RN helps instead of just confusing the issue.
All the best.
Bill

I think it's great they provide that service. Hopefully your RN will be able to help you out. Sometimes a fresh set of eyes can see things we haven't.

I know what you mean on the Marinol but if everything else is failing it might be worth at least a conversation with your doctors.

Hang in there and you're always in my prayers,
Andrew

Not sure I would agree to try it, even if my doctor went along with it, I have strong mixed opinions on its use.


if I were in your condition I would be willing to try anything. I find it strange that a person would take opiates and be against taking synthetic THC.

ed

I think having the RN to coordinate is great. I imagine that she is there to assess and advocate and provide what your medical team will see as a level headed holistic view on what is happening with you.

I know you have a good relationship with your oncologist. However he has not focused enough on your pain control and weight loss and I am glad this RN is seeing it.

Wish you the best David.

An

Hi David

It really scares me that you've lost so much weight. Wow. I hope the RN will get you help with that. I hope that she will be a good asset for you. Will you let me know what happens as the weeks go by? You have my E-mail, if you need to talk or anything. Take care my friend.

love and hugs
Loretta

David- I had been thinking about you a lot this week. Maybe the stories about the VA problems on the news triggered it. Or maybe hubby's increase in foot and leg pain. I am glad that you are getting a fresh look at things- however it came about. She is also focused on the issues that seem to need addressing right now. Stay open to her input. Still sending positive thoughts your way, and prayers, of course.

David -- you say the nurse is thinking outside the box. marinol is an appetite stimulant and for a guy who has lost 50 pounds since January whose case defies diagnosis I'd say her thinking is very much "inside the box".

at some point you just have to treat the symptoms because the whys may never be known.

tell me again why you have mixed feelings about marinol or medical marijuana for that matter especially when you are literally falling apart and wasting away?

ed

David,
Sorry to read this again. I agree with the above poster, what you're describing seems like some sort of wasting syndrome which should be addressed asap (wasting syndrome doesn't spare the heart either).

Take care and thanks for posting and update.

David -

As always, best hopes for improvement, and that any new approach, such as the RN, will bear fruit.

The RN sounds like a positive development, as nurses sometimes have insights into things that for some reasons doctors seem to lack. Also, the availability of a 24/7 number to call when needed certainly sounds good. Her thoughts about PTSD sound a little surprising, but let's see how that plays out. But she does sound like a good person to have in your corner.

The "wasting syndrome" (Cachexia) does sound like a possible diagnosis, at least it seems to match a number of your symptoms. Not a diagnosis one would want to hear, but as you have said, better to get a firm, reliable diagnosis (it that's what it's going to be), because then at least you know what you're up against.

Your situation reminds me of a post I made once some time ago, and an image I described in it, but I believe it's worth mentioning again because of the hopeful image that I think it presents.

I heard it described years ago during one of the MDA telethons. A researcher came on and talked about the discovery that had just been made of a certain gene that controlled one of the muscular dystrophy variants, a discovery of considerable importance, he said.

He likened it to a person in a pitch-black room, trying to box with an enemy in the room that could somehow see him in the dark, but he himself couldn't see this enemy. So every blow that the enemy was throwing was landing right on the person, but the person could only swing blindly in the dark, hoping to hit the enemy once in a while.

The researcher then said that this gene discovery was like someone suddenly turning on the lights in the room. Now the person could see his enemy just as well as the enemy had been able to see him, and now every blow that the person threw would be landing right on target, on his enemy.

That would be the great thing about a final, accurate diagnosis. At that point every blow the doctors, and you, would be throwing would be right on target.

Keep us up to date, David, and you know that we're all pulling for you.

Glad you have someone really taking an interest in you David. Thinking of you as always.

Jane x