[Andrea Barnett Budin]

Terri,

I sense your frustration and your rage BIG TIME. It is great that you are on top of this and keeping yourself well-informed and proactive. But -- can you manage that without hyper-ventilating? I don't mean to be flip. Not at all! These are anxious times you're going through. We all know that too well! But your anxiety is surely felt by Ruth, which has to be alarming to her. She needs to be enveloped in a peaceful, positive atmosphere.

My spouse, Paul, was just like you. However, he asked questions couched in a calmness. Super informed and questioning left and right, and yet, with a soft, friendly, *team-like* involvement. The doc, Paul and I worked together. As a group effort. Putting our heads together. Not antagonistic, which I am picking up from you. I understand it is coming from a place of fear, which is quite natural. I am only suggesting you let up a little.

I have bee receiving Procrit, and Aranesp, over the last 9 yrs, as my HGB drops, as does my energy level (being on Herceptin, which I believe is keeping me alive and holding mets at bay). I get regular ECHOs and am holding my own. I USED to get the Procrit if I was under 12.4. Then time changed, and we switched to under 12. NOW, as insur co's won't pay the exorbitant price ($7,000 an injection today vs $800-$1200 for a long while). Medical facilities kept upping the price as many insur co's weren't covering enough. (Mine usually did.)

NEW Cancer Center rules -- you have to be under 11. At least for NON CHEMO PATIENTS, which is in actuality what I am. I was 11.3 and feeling like I was crawling. I know a few days after the injection I feel peppy again, thank God. QOL is a big factor. I was asking FOR the injection. No. You can't get it (because of above new rules). I pushed. They checked my chart. (My onc was out of town.) They found a notation that stated that IF NEEDED, I WAS TO GET 300 ARANESP. Still, they checked w/the pharmacist who recited the new rules. I asked them to call my insur co. I was calm on the outside, but outraged on the inside that I had to beg for assistance, per my personal experience. They sent someone to have someone in whatever dept (?accounting) call my insur co. They got through, discussed back and forth, as I waited, in the dark so to speak. Finally someone returned to say they apprvd a *half dosage*. I said good. They said ok. The half dosage was just as good (150) as the full dosage, in lifting my energy up to functioning, not a struggle to get dressed in the AM. I remained adamant, determined, gently aggressive and in control. I wanted to scream. I wanted to cry. I felt so frustrated. My husband was unsure if I should get the injection, fearful of the *studies*. Again, I was going on 9 yrs of *personal experience*. MY EF has been okay w/ea ECHO. *Others* this is not true. *I* felt like a wreak w/Taxotere, BUT it annihilated every one of my met liver tumors into nothingness, so I'm good with that. *Some* had not too bad a time w/Taxotere. Some can be 7 something (HGB) and walk pretty perkily. I can't. Every person, every *body*, every cancer (and all its infinitesimal fine points) is DIFFERENT. Cancer never read a book. There are no hard and fast rules. There are no simple answers. At every turn is yet another conundrum. Another exasperating issue to muddle through. Another surprise! Unforeseen matters abound. Disappointment is unavoidable. So -- Terri -- be prepared to remain on your toes, and to try as best you can to be aggressive and yet full of grace. It is possible. It will help YOU *not* make yourself sick over worrying and feeling frustrated and stressed out. And it will help Ruth HEAL and thrive in the best of atmospheres. Your love is apparent. Let that force work for you and for Ruth. I guess that's my point w/relating my experience above. Paul got everything done, with the docs, the nurses, the insur co's, without making himself crazy (and me too in the process). Occasionally, when I'd hear him on the phone in the other room (as I lay in stupor mid chemo) and I realized it was a half an hour and he kept repeating the same, SENSIBLE thing to the person with the sense of a penny on the other end of the phone, and then I heard him raise his voice -- which he doesn't do in such matters USUALLY, I would drag myself out of bed and go to his office across the hall. I'd see him turning red in the face, so enraged, uncommonly so, and *rightly* so. I'd say to him, PLEASE, PAUL, YOU'RE GOING TO MAKE YOURSELF SICK. I NEED YOU TO BE WELL. And he'd calm down. He'd see what was occurring. He *got* that he was spiraling out of control and he would excuse himself from the ongoing conversation. We learned that if he called the insur co right back, maybe waited five minutes, he'd get to speak to ANOTHER person. And, usually, THAT person immediately saw the problem he was calling about and rectified it. So if one route is blocked -- we learned to take another.

If you are forever p'd off, even if that is unspoken, it is a clear message being sent, I assure you. Wishing Ruth and YOU an easy time. Make your way through the process, the surgery, the treatments and the healing. Be a part of each step of the way, doing your best at every turn. I wish you well, as I wish all my Soul Sisters and each of their loved ones fighting for them, and going through this ordeal totally with them. I honor all!
Andi