Tuesday, August 25, 2009

Prognosis: vague?

I have TWO (2) followers now! Hooray!!

I've been thinking about my prognosis, or lack thereof. Radiation was canceled today and yesterday because the machine broke down and they were waiting for parts. (Maybe they need a new machine??) It broke down on the patient right before me. Through my mind flashed the scene from "Logan's Run" where the plastic surgery machine went bezzurk and tried to cut up Farrah Faucet. I hope he didn't get cooked; I didn't see him afterward.

Four days without treatment. Is it my imagination that the pain seems worse? I don't know, since they are saying that the treatment can alleviate 80% of the pain. I still have a lot of questions. Or, maybe I just am beginning to formulate questions, and that may be a good thing. I'm sure my brilliant doctor is anticipating everything, being a brilliant doctor and all.

I don't want to go back to work. I feel like crap, and don't imagine the crap just going away on it's own in a couple of months; not if I have to continue taking Femara. And if my pain is thus after 7 treatments, I don't see it diving to 80% in 7 more. But maybe I'm just a big damn baby. Maybe an "8" for me on the pain scale is everyone else's "4". I doubt it. I happen to think I tolerate a lot of pain.

I was very disappointed that the nuking machine was still broken today, because the radiation doctor sees everyone on Tuesdays, and I really wanted to pick her brain about the prognosis.

I see the oncologist on Friday after my radiation treatment. I will have to see him alone this time, so I can get better answers from him, one-on-one.

Dear Doctor P,

As a preface, let me remind you that I love and respect and admire you. You are brilliant, kind and caring. This I hear from everyone I speak to who has worked with you, and from my own experience. You know how special you are to me.

I'm terribly, terribly bothered by the fact that I completely blocked out the biopsy that I apparently had. Perhaps I could see a report or something to make it more real to me. Some things are still creeping me out, random things flash me back to the scariness and freakiness of the ICU. It was not a pleasant place, and my hallucinations/dillusions made it worse. I still want to smack the nurse who kept asking me what year it was. Who the hell cares?

When we visited last Friday, I asked said that I needed to know, "if I was going to get better and go back to work, or if I was dying". I think mention of going back to work may have caused some excitement, and you assumed I needed a goal, a point B, to work for. You said it wasn't unreasonable to expect to be back to work by Halloween or Thanksgiving. We all felt good about that at the time, perhaps because it would mean that some of the other stressful things facing me would not have to be dealt with. We did, however, skip over the part about dying. While I don't need a goal, I do need a bottom line, so that I can plan what needs to happen. Bottom line, if I'm likely to die, I can dig in my heels and try not to. Bottom line, if I have to go back to work, where I worked in pain for 9 months, then I'd just as soon be preparing to die. While I like to be busy, energy permitting, and have a purpose, forcing myself back to work, where people (dare I say) persecuted me for my pain and were quite intolerant of the things that chronic pain causes, makes me want to curl up and scream. Or scream and then curl up. Not sure which natural order in which these things come. If my cancer is likely to grow and get worse over the next 6-12 months, then why, WHY do I want to force myself back to work? That will only make me more tired, have less energy, and require that I take more medication to deal with stupid / unfair people.

I worked through most of my treatment the first time around, and looking back I say, Why the HELL did I do that? It's because we fear and feel we have to. Being a single person, single parent, I have pushed myself to endure and tolerate things that others would not. Well what the hell...I'm not doing that this time. If I have life-threatening cancer, then I should take life-protecting measures. Or at least life-easing measures. I don't know. I could have 2 months, or 3, or I could have 6 months, a year, or more! I guess we really won't know until we compare scans after radiation treatment to see how far it has progressed or retracted. Oh, let's not forget I have some on my skull as well.

I have to wonder if the things you said while I was unconscious changed when I woke up, or what. I need the straight poop, the bottom line. If it's not good, then I'll deal with it, and I'll have you and a team of others to help me do so. If I'm supposed to get better, but still feel like crap all the time because of the Femara, then I'll need even MORE help. Maybe I'm a big woosie this time around, but I seriously do not feel like being anyone's martyr or hero. First time around I was younger, stronger and healthy going in. This time I'm older, more tired and already exhausted and pain-riddled. Perhaps we should also discuss the antidepressant factor. I'm not sure I'm getting enough help in that department.

Prologue to this is that I think you're awesome, that I don't want anyone in my family yelling at your for anything they imagine needs yelled about, and I know that you want what is best for me. I am exhausted and depressed and I need support for that. I need real answers, not just answers that make others feel better. I know I can trust you for this, even if it is difficult.

Shelli G.


Mary said...

My sweet Shelli -- I think you have the right approach to your visit with the doctor. Print out that letter and hand it to him! Or, better yet, read it to him. He owes you the straight scoop, no matter what the scoop contains.

Karen K said...

Remember, you are not alone. Whatever the straight scoop is we will be there for you, always, no matter what.

Ana said...

I have no words of wisdom, just that I love you very much. Do what feels right for you, even if this means going in a totally new direction with your career, your life, and how you spend your time.

Ana said...

I have no words of wisdom, just that I love you very much. Do what feels right for you, even if this means going in a totally new direction with your career and how you spend your time.