Partial Pathology report

Kris, you can schedule a consult with your radiologist well before your radiation treatment begins - in fact, I think it's an excellent idea to do so. I learned a LOT from meeting with my RO and she answered many questions that helped me move forward in decision making. In fact, she was more helpful than my MO and the first surgeons I saw.

Good luck getting all of this organized and underway. It's a long haul but we'll support you every step of the way.

Kris,

Within 3 days of being accepted by Emory, besides the endless tests, my MO set up appointments with my SO and RO even though I would have 7 months of chemo before I had surgery and 9 months before I saw my RO. In my case, because of the nature of my IBC, my RO didn't want to work around skin expanders but my SO evidently created all sorts of innovative surgerical stuff and really wanted (and wrongly assumed I wanted) to do a reconstruction using some of her new techniques. And, I admit, my SO is smart as can be. Unfortunately, when she's not in the OR -- as in seeing patients, she's a tightly wound, big time Alpha dog. I didn't want a reconstruction: actually, at that point, I was lobbying for her take every thing she could out of my body because suddenly I had this thing called IBC and I really, really just wanted it to just go away. I was pretty freaked out after my SO. Two hours later, I saw my RO, who is the most complete doctor I've ever met. She handles things that my MO would have gladly done, but my RO wants things done immediately and will keep fighting until she gets things done. Yupe, another Alpha dog, but one who gets it that we are not yet up to speed, are scared witless, and are having to move at warp speed while we're still learning how to say the words "I have cancer." Yes, my MO is another Alpha dog but she's young and Emory is fast tracking her so she's pretty stressed. For some reason, there is a wee bit of unease between us. My caregiver thinks the tension is there because my MO isn't used to patients like me. I've spent over 30 years doing and reading other's research so, with the help of a medical dictionary, I can read "scholarly articles." Plus I'm lucky enough to have a secret weapon: one of my dearest friends is a hotshot infectious disease doc (5 years ago, she delivered the keynote address at the yearly international AIDS conference) who has watched my progression like a hawk while also sending me those evil scholarly articles. On the other had, my stone-faced SO becomes a different person in the OR: she does little happy dances and makes an endless number of jokes, some which were actually funny. The point I'm wandering to is this: you're the only one who will have the full knowledge of your cancer. And each of your oncs will have a different knowledge base -- different yet, in many ways, overlapping. Thus, my MO could tell me right away that I would have radiation therapy, but she didn't know that my SO was pleading to me to let her recreate my breast while I was whinging about wanting both my breasts to be gone and my RO didn't want this did want this but did want that. I made sure I had damn good docs. But even though Emory has its stuff more together than any medical group I've ever encountered, I knew (unless someone had the lifetime it would take to get a real knowledge of my disease) that it was my job to get and keep sight of the overall situation. It was also my job learn from each of my docs and to make sure we were all on the same page. Each of my oncs gave me information that shaped my treatment plan -- information which sometimes originated from me. The only battle I lost was that I didn't have BM but a UM. The powers that be have decided that doing a BM when only one breast is involved entails more risk than benefit (yeah, like they'd know) and I couldn't convince them nor would my insurance cover it. Kris, this rambling post really has an important message: you are surrounded by hotshot docs. They will hopefully tend you well. But you are the pivot point. You know what you're feeling and you may receive conflicting advice that, if you don't mention it, won't be addressed. That's why I urge you to meet with as of your docs as soon as you can. Beyond learning about your cancer, it is ultimately empowering for you to be very proactive.

Now comes the reality check. Although I've use the words I, me, and mine with regard to this early onslaught of tests and docs, more often than not, especially in the beginning, the person keeping everyone on the same page was my caregiver. She'd talk and I'd sit there quietly honing my ability to disassociate. Over time, I did become the one with the bookmark, but I wouldn't have made through my DX process and first weeks of treatment without her. And that is my second (repeated, I know) bit of advice: take someone with you who is capable of dealing with the morass of medical and emotional fallout that cancer causes. If that idea makes you feel as though you should tough it out on your own, think of your caregiver as your administrative aid. For some unknown reason, my caregiver loathed that word so she declared that she was my keeper, not my caregiver. Yes, even during miserable times, my keeper made me laugh. Kris, try to remember to laugh. It helps.

I daresay you know all this but it nevers hurts to be told (at an untenable length) that you're what all of this is about. Let yourself be taken care of and, as much as you can, be proactive. Wow, that sounds sort of like real life. Because it is real life. In between tests, infusions, and doc appointments you still have the ability to feel Joy, Delight, and even Reckless Abandon, if she decides to visit. I embraced good old Reckless and went out and bought myself a brand new bicycle. I hope this trio comes to be with you often.

Take care,

bride

Kris,

I drive down from Rome, GA to go to Emory. During my 6 weeks of rads, I (and my caregiver) stayed at the Hope Lodge -- it's free if you live over 50 miles from Emory. While my MO and SO were excellent, my RO, Dr. Mylin Torres, is the best doc I've ever met: she knows and cares more about her patients, how to cope with their SEs (even if a SE is not rad-related), and how to keep everything in line. If you're headed to Winship/Emory, I'd urge you to use Dr. Torres as your RO.

Best,

bride