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Apr 22, 2017 11:59AM
Wren, I am the same way. Having been a graphic artist, having spent 30 years hanging around print shops, inhaling the fumes of printers' ink, I find the printed word on paper irreplaceable. I think I am just grieving that loss, much as I grieved the loss of my breasts, and the component of my decision to not have reconstruction which was, the real thing or none at all.
Finished off the week with still no word from the oral surgeon with a date for my teeth extraction. My fear is that if it can't happen before May 2, when I have my MO appointment, I may miss my window entirely. With scans showing 20% progression, he might say we can't wait to start another treatment plan, and put the dental work on hold. I would have to veto that. The spots where the teeth are broken are actually cutting the inside of my mouth. I took my cuticle nipper and broke off the worst two spots, but I have another coming up. If my mouth is dry at all and I try to move it - talk, or eat, or even smile! - it catches and tears. I've started wearing a mouth guard at night because of the sharp edges.
I think I've ranted on this thread about the surgeon who did my mx and left plenty of skin so I could reconstruct, in spite of my telling her clearly, and with witnesses, that I would never reconstruct. I had given it a lot of thought, talked it over with DH, and was adamant about my decision. As a result of her decision, a have huge saggy bags on both sides. I've developed fat necrosis, had to have additional biopsies (since the right side was prophylactic, there could have still been breast tissue). I never had a surgical follow up; 3 weeks after the mx, she did my port placement surgery, guess she felt that was sufficient follow up, except that I never actually got a chance to talk to her. Then I went right into treatment and have been on the hamster wheel ever since.
DH and I have discussed it, we're not the litigious type, but it has bugged me that I never made my displeasure known. The other day I called her office. I asked if I could leave a voice mail, and the receptionist pressed me for details, so I told her the whole story. She sounded very sympathetic, told me she took notes of it all and promised to convey it to the doc herself and be my "advocate". She asked how it could be made right, since I didn't want to go through any additional surgeries. I said I just wanted the doc to tell me why she went against my clearly stated wishes. Really, I want her to admit she was wrong. I'm not going to sue her, but she needs to LISTEN TO HER PATIENTS!!!!! What is so hard about that?
Ok I had no intention of writing a meganovel, but I have one more thing. So happy I have a PCP who does listen! I saw her this week, and we discussed my ongoing battle with chronic fatigue, which I had before cancer treatment. I said I have so much I want to get done and don't know how much time I have (not that anyone ever does, but sometimes it's more clear than others, if you know what I mean). So I asked her if she would prescribe something that might help. I suggested Adderall, since I was a little familiar with it - both of my sister's kids had been on it for ADD-ADHD years ago but I'd never tried it before. So she wrote me a script for it, told me to start out with 1/2 tab to see how I did. Tried that the first day, but didn't feel any different. Next day took a whole one. This is my third day on a whole one and it's a new world. No more napping! I haven't tried to do a lot, I think I will still need to build up my endurance, but I'm very pleased. I'm even going to try to make it to church tomorrow! (Maybe I'll even try to read again!) I still have to be careful about not overdoing, I know. But it's definitely better.
4/16/2014, IDC, Left, 5cm, Stage IIIC, Grade 2, 4/8 nodes, ER+/PR+, HER2-
4/16/2014, IDC, 5cm, Stage IIIA, Grade 2, 4/8 nodes, ER+/PR+, HER2-
5/21/2014 Mastectomy: Left; Prophylactic mastectomy: Right
7/1/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
1/15/2015 Whole-breast: Breast, Lymph nodes, Chest wall
3/31/2015 Arimidex (anastrozole)
4/11/2016 Xeloda (capecitabine)
7/14/2016, IDC, Left, 5cm, Stage IV, metastasized to lungs, Grade 2, 4/8 nodes, ER+/PR+, HER2-
7/25/2016 Faslodex (fulvestrant)
11/14/2016, IDC, Both breasts, 5cm, Stage IV, metastasized to bone/lungs, Grade 2, 4/8 nodes, ER+/PR+, HER2-
11/16/2016 Halaven (eribulin)
3/13/2018 Gemzar (gemcitabine)
4/19/2018 Abraxane (albumin-bound or nab-paclitaxel)