Tuesday, November 13, 2007

Experience with doctors while recovering from surgery

Hi everyone,

Well, I thought I would write. I'm crazily trying to clean up my office these days -- wonder what that says psychologically! Nonetheless, that is my current focus. Though right now I should go to bed, I'm focused on my oncologist appointments tomorrow, so I need to do something. And here I am.

This has been the weirdest journey so far, to say the least. And I feel like it is just beginning. I got this sobering news, but at the same time, life continues as normal. It's both grounding and surreal.

Being diagnosed with cancer a second time is quite sobering. Last time, I didn't hesitate to ask for emotional support or help, I had a fantastic support system, a wonderful surgeon, and I feel like I sailed through everything, floating on all that.

This time, I feel like I am on my own in so many ways. I am really hesitant to ask for help, though I think I need to get over that. At the same time, I'm physically doing relatively okay. It makes me crazy to lay in bed and hear my mother-in-law come through the door, and in a stage whisper ask someone, "How is the pain?" I feel like screaming, "I'm not on a morphine drip!!!!" But then, I don't have the energy to do that, so maybe she has a point???? ha ha

I have to remind myself that she means well, though I do get a bit passive agressive. I now have some form of childcare almost 24 hours a day, and it feels like all my jobs and responsibilities are being covered, as though it really wouldn't matter whether I was here. Sometimes I just slip out of the room and no one seems to notice. I hate hearing other people play with my kids when that is what I want to do, but I just don't have the energy right now.

I also feel like I am on my own medically, though I'll admit that I am lucky to have my husband's help, as well as my friend, M, who is coming to appointments with me to help me sort through things. She's been through this, unfortunately, with her mother and numerous friends, so she is very familiar with this landscape.

Nonetheless, this can all feel very isolating!

BUT, I really went into this differently than last time. This time, I didn't educate myself and just trusted the system, like I was floating randomly in a river. One would think I would know better. Okay, yet another opportunity for growth! So, I had a colonoscopy, was referred to a surgeon with a great reputation. He met me in the hallway between operations. I assumed that he was kindly squeezing me in when he had no office appointments for a month. But what that also meant was that there were no office notes, which turns out to be important as I shop around for oncologists who want to know my history. Whoops.

Also, I learned that I really need docs with positive energy. The surgeon is a "typical surgeon": Go in, do the job, hand you off. My breast surgeon was wonderful, reciting whatever positive affirmations I wanted during the surgery, letting me wear headsets with music, describing everything she would do, checking in afterwards. This guy -- he would only talk about how my scar would look so good when I was more concerned about the process. And who knows what he was talking about during the surgery. I think that is why my healing is so weird, but, at this point, I have to find a way to let that go and just help myself to heal.

The surgeon doesn't really want to be involved, and handed me off to an oncologist. Long story short, there was kind of a debate as to who at the BI should get me, and I wasn't so comfortable with that, because in the process, they were making alot of assumptions about where the cancer came from. There are more details -- I'll spare you!

Then I booked appointments at Dana Farber and MGH for second opinions. The staff there seem to be really knowledgable, though I have yet to meet the oncologists. (I'll meet the DFCI onc tomorrow.) But, at both, they were surprised that someone did a cancer surgery without first doing a CAT scan, and are flummoxed that there are no office notes prior to the surgery (or after). Not giving me the warm fuzzies about my experience at the BI, though I will meet with their oncologist tomorrow as well.

I'm interested in seeing how I'll do both these appointments in one day, as I nap in the afternoon (what a luxury!), but we'll figure it out. Maybe it is time for caffeine! I really have no energy.

So, I do feel like I'm on my own in selecting the next step. The good news is that I have a choice. I have to say that it really blows my mind to walk into Dana Farber, seeing patients at all stages of cancer and wondering if that is my future. Though, my current feeling is that that is the best place to be.

Next, I fall back on nutrition. Maybe I can do something there? Guess what -- the diet they recommend is the diet I basically have followed all my life (okay, minus the lovely creamy chocolate brownies! :-) ). Not much there, but I'll keep looking. Kerry, you'll love this: My first meal after surgery was broth, Jell-O and ice cream! I read that Wolfgang Puck is now crafting hospital menus, but I guess not at the BI.

I started talking with survivors, but I don't think I'm in the right frame of mind yet. I need to find something to relate to in a survivor. Since I don't really know alot about my case, it doesn't help me to hear someone else's, because I can't relate, so that is on hold, though I am still collecting names.

The other thing I started to do was work on what psychological message was I supposed to get last time that I missed??? That is probably the most interesting pastime for me!

I'll leave you with this chuckle: As a result of this surgery, it is really painful to hold in gas. So, I have to let it out. And it stinks to high heaven! Almost immediately, someone looks into my one-year-old son's diaper while he has a puzzled look on his face (because he usually walks over to be changed when he poops -- you don't really need to check him). It cracks me up but then I have to own up and say it was me. AND, this now gives my four-year-old license to fart anytime, anywhere. For a four-year-old boy, this is joyful.

Well, thanks for reading this far, or at least, skimming this far. I got alot out of writing this, so don't feel like you really need to
read the whole thing unless you want to! But I do really appreciate all your support, in so many ways.

Love, Marie

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