A lot has happened since I posted Saturday morning. I was in lot's o pain on Saturday, it got progressively worse. I hovered around the boy while he got ready for the ball, to the point of him putting hand on hip and announcing to the hub and I "I can dress myself!" He looked so handsome, cowboy boots making him that much taller than I. So cute I can hardly stand it. The mom that was driving & his friend arrived - she and I proceeded to snap snap snap pictures, "Smile! Stand still! Quit goofing around, look this way!" The hub said "OMG, I'm having flashbacks of my mom doing this before prom." Some things never change. But I digress...
Right after they left, about 6:30pm I started feeling really, really bad. Dizzy, hot, sweaty. I took my temperature, it was 102. Un-oh. My brief post-op instructions said call if it's over 102. I took Advil, bundled up in the recliner - thought maybe I'd overdone with the pre-ball primping and excitement. I got one of my many reference books to read (10 Best Questions for Surviving Breast Cancer by Dede Bonner - very good book) Hub was looking like a caged beast by now, so he saw me settled in and went for a walk. I flipped to a section that said "Best Questions Before Breast Surgery" - yes, I'm reading this a bit late, but I hadn't read this book prior to surgery. It starts out with deciding which breast surgery is right for you, first options are under: Breast Conserving Surgery, of which there are 2: Lumpectomy and Partial Mastectomy. STOP RIGHT THERE! I was under the impression, from what my surgeon had told us, that these were the same thing! But oh no, they are not. When I had my one meeting with the breast surgeon we were discussing him removing the lump - obviously. Since we did not have a diagnosis due to the failed biopsy, we were only discussing taking out the lump, but he did ask me about my mastectomy vs lumpectomy feelings in the future, if it was cancer. He confirmed that lumpectomy w/treatment in most cases offeres the same survival & reoccurance rate as mastectomy w/treatment. I had said - if a mastectomy did not offer me an health advantage, I'd hang onto my breast. I remember - and the hub confirms he remembers as well, that I said "so we're doing a lumpectomy, removing the lump and trying to get clean margins around it?" He said yes - "but it's not called that until we have a cancer diagnosis". OK - whatever, lump removal by any name is a removed lump. At the surgery center on Friday they were having me sign the paperwork, and pushed a paper up saying I was consenting to "partial mastectomy, left breast". I said "WHOA! That sounds scary! Which caught hubs attention, so he leaned over and read it. I said "I guess that's what they call it, huh?" He said "I guess." Later, I was changed into the giant, awkward hospital gown, sitting in the pre-surgical area, hub's with me. Surgeon comes in and says "Any questions? I want to go over the different scenario's with you" Which he did, the #1 if it shows benign, #2 if it shows cancer (it was), he does sentinal node & it's benign, #3 if sentinal shows malignant as well (it did) and he proceeds with axillary disection (he did). He asked again, "any questions?" I said, "well, uh, it was really disconcerting when I signed off on a partial mastectomy!" He visibly puffed up at that and said "what does that mean to you?" in a really huffy tone. Oh-oh, don't want to piss off the man that's about to cut me up! So I said, in a joking fashion "It means you're going to rip a chunk out of my breast!" Oops, he looks even more huffy, and says "if that's what you think you shouldn't have signed it! I'm going to do exactly what we discussed!" Oh shit! I've waited 37 days to get here, and I've pissed off the surgeon! I made placating noises, hub made placating noises, we assured him I was ready for the surgery - duh - and off he went.
So back to Saturday night, with me miserable, fever ridden and in terrible pain from both of the incisions and the drain - and I'm reading this book. It explains that lumpectomy & partial mastectomy are two different things, totally. I was sure I'd had a lumpectomy, which is the removal of the lump, getting enough surrounding tissue to try and get "clean margins" around it. But I know I signed the paperwork for a partial mastectomy - and here's an explanation of what that is: "the cancer is removed with a segment of tissue down to and including the lining of the chest muscle below the location of the tumor". Whoa. That's a bigger deal surgery. That could be why I'm experiencing so much more "discomfort", or pain than the women I've spoken with that had lumpectomy's. I felt violated, I felt lied to. And I was sick, in pain with a high fever - bad combo. When hub came back from his walk he found me flipping out. He absolutely agrees - we were not informed at best - lied to at worst. This is not to say that I wouldn't have 100% agreed that the partial mastectomy was the way to go - I would probably have chosen it given the options, the point is I wasn't informed, I wasn't given options. At that point I'd gone over 24 hours without knowing what surgery had actually been done to me (rings bells to the night after my surgery when I didn't know what lymph node surgery I'd had, no?) And at this point, on Saturday night - I couldn't confirm what exactly had been done to me now, either. So I just miserably sat & cried my eyes out. I straightened up enough to put on a happy face when the boy returned from the ball after midnight, glowing with happiness. It was "awesome!" He had a wonderful time! How great is that? Pretty damn great. I then barely slept all night, lying in my recliner miserable with chills, hot flashes and sweats, every breath I took caused shooting pains from my wounds.
I got in bed about 5am Sunday morning. Woke up around 9:00am even more miserable than before. I cannot find my thermometer anywhere. No memory of where I'd had it last, hub had gone off to his office. I called 2 of my friends that live nearby - no answer, probably at church. Called the next door neighbor I know pretty well - no answer. Tried and tried to remember the name of my other next door neighbor......remember I'm not thinking all that clearly. Finally looked him up on dallascad.org by address - then found thier phone number on google - called him up "hey, I had surgery on Friday and I really need a thermometer....." He says sure, come on over! Ah, well - it's really kind of serious and I don't think I can make it down my front steps and across the yard.........That scared him, he dashes right over with it. 103.2 - bingo! - I get to call the doc. He actually calls me right back. He says "have you been stripping the drain?" what-ing the drain? I assure him, those words have never been spoken to us. To that he says - how quick can you meet me at my office? I confirmed with the hub, and my sister in law that was with us in the post-surgical area the entire time getting the after care instructions - NOTHING was said about "stripping" the drain.
At the doc's office he injects the surgical sights with lidocaine, then drain's about a pint and 1/2 of blood and fluid out of me. He then "strips" the drain - basically cleaning the tube that runs from me, to the collection container at the end - about 2 1/2 feet of tubing. It is indeed clogged with tissue along the entire length of it. I'm writhing on the table seeing nothing but the red mist of pain -luckily the hub pays close attention so he now knows what to do. A few hours after the mondo antiobiotics and fluid removal, I finally sleep for a few hours. Fever starts inching down, pain is receding - by midnight it was down to 100.4 - hub stripped the drain again successfully, I had another dose of antibiotics- I slept the entire night in my bed. This morning temp is down to 99.4. The pressure & swelling is down considerably, which means the pain is down as well.
While at the doc's I said "did you do a lumpectomy or a partial mastectomy?" He said "they're the same thing, the terms are interchangable". I said "I've been reading, and two of my books explain them as totally different things. So the books are wrong?" There were a few beats where there was silence, he was filling his syringes....then he said "well, yeah, pretty much." "Did you remove the lining of my chest muscles?" He said "of course!" I have to add, he was very, very conciliatory and nice on Sunday - not ever the authoritarian, huffy testy guy he was previously. He did not in any way take a "tone", he could see how grim and sick I was - he did not push his luck. I did not take this time to fully get into my grievances with him, once again I was in quite a compromising position, with him about to stick a humongous needle in me. Afterwards, when we left there I was practically incoherant. I have the whole thing recorded this time tho! There will be no more conversations with doctors that are not recorded in their entirety.
To recap: I did not have a lumpectomy, I had a partial mastectomy. I was not given a very key piece of my aftercare instructions, so I developed a raging infection that caused massive fluid retention, high fever and extraordinary pain. I got drained, am on strong antibiotics and am on the mend.
I've signed up to have a full 2nd opinion at UT Southwestern, and my internist gave me the name of her favorite oncologist at Baylor. My pathology should be in tomorrow. After Mr. current surgeon gives me his news on the report and whatever recommendations he has, I will have him send all my info to the Baylor oncologist, and tell him that I've also set up my second opinion at UT - I will be picking up my slides so that the UT pathologists can re-read them, I will meet with the UT breast surgeon to get his take on things, then I will meet with the oncologists at both Baylor & UT or their recommendations. Believe it or not - I feel better with all these appointments ahead of me. I feel much wiser, despite being much worse for wear. I've learned - I will keep plugging along until I am dealing with physicians that I believe in, I will listen to my gut, to my intuition and follow it. Period - no exception! I was talking to my sister in law today, she's been having some tests and will need some surgery. I asked her if she was happy with her doctors. She was like - well, yeah, pretty much.....I said "do you feel like they are brilliant?" That just popped in my head - but it's true, I want my doctors to reek brilliance. Just like I want the President to be the smartest man in the room - I want my doctor to be the smartest man in the hospital. That is my mission, and I have no choice but to accept it!