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Tuesday, March 25, 2014
My notebook
This is kind of a how-to post, for people who know people who may be in this awkward situation. Just wanted to note what I've been doing to alleviate my anxiety and prepare for my appointment this morning with my surgeon.
I bought a breast cancer notebook, on the advice of my doctor.
I got a 100-page college ruled spiral bound green notebook (not pink because, really, enough), with a two sided folder page in the front so I can tuck in CDs and other bits of paper I might need to keep track of. I wanted to go light enough that I wouldn't curse my life carrying it around. I wanted a folder for the stray bits. I wanted college ruled because I love college ruled. I did not go crazy with three rings and dividers and decals and collage visualizations and stuff like that. I could have but I'm just too busy on other fronts.
On the first page, I have all the contact info for every doctor (surgeon, OB/GYN, general practitioner, and eventually oncologist) (and by the way have I mentioned that I'm getting tired of this story, and these words and this whole new project that's been dumped into my lap?). Also on that first page are the pharmacy, the breast center, the imaging center, and mine, Roger's, and a few other friends' numbers, just in case someone has to call someone and I'm, you know, unavailable.
On the second page I've started my list of questions to ask the surgeon today. I headed the page with the name/time/date of the appointment so I can refer back to it, and then, over the next few pages, I just wrote a bunch of questions, spaced out so I have room to answer them inline:
- Are the lymph nodes involved?
- If so, how many?
- How much involvement?
- Either way, what does this mean?
- Can we tell what type of tumors we are looking at?
- How many are there?
- Are the lobular or ductal?
- Are the in situ or invasive?
- How long have they been there?
- Are they fast moving?
- Do we know what caused this?
- What is the recommended treatment plan?
- (Lots of space open for the answer for this, plus the back of the page)
- (Because I don't want to go down a bunch of scenario rabbit holds, I've left this one open ended. The superstitious part of me feels that even dwelling on all the worst case scenarios will some how make them happen.)
- If reconstruction is going to happen:
- Will it happen at the time of the first surgery?
- How many surgeries am I looking at?
- If we can conserve the breast tissue:
- Does she recommend taking tissue from somewhere else?
- If so, from where?
- Implants?
- Will radiation be needed?
- What to expect?
- Duration of suggested treatment
- Type
- Pros
- Cons
- Will chemo be needed?
- Type
- Pros
- Cons
- (You will also note that, even though I didn't want to go down a rabbit hole on page three, by pages four and five, I was down there with the mad hatter and the red queen.)
- How best can I take care of myself pre-op?
- What will surgery be like?
- How much discomfort will there be afterwards?
- For how long?
- What happens after surgery?
- What should my diet be like?
- Currently it is going like this:
- No sugar
- No dairy, except a little butter for cooking
- As much dietary fiber as possible (30 g/day is goal)
- No caffeine
- No alcohol
- How does she weigh in on the soy controversy?
- What weight should I be aiming for?
- How much exercise should I shoot for?
- Currently shooting for 30 minutes/day, 5 days/week.
- How soon will life be normal again?
- Should I get an oncologist in place pre op?
- I am planning on getting a second opinion. How does that work?
- What are the risks of recurrence?
# posted by Katherine Doughtie Nolan @ 7:55 AM  
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