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Jun 18, 2018 11:56AM
SB thanks for asking about me. <3
Had a breast MRI two weeks ago, even though my MO doesn't think it will tell us anything because of the extensive scarring. I got angry when he said it doesn't "look" like cancer and I had to remind him that it didn't "look" like cancer the first time either, but the skin on my breast over the primary tumor is red, irritated, flaky/peeling, hurts like h*ll and has been getting worse for two months now until I finally mentioned it to him at my last consult. After having my tumor ulcerate once already, of course I'm worried about what's going on. He reminded me 3x that more chemo won't extend my life, it will only make me sick and miserable. The thing about palliative care is that you don't do any treatment that is worse than the current symptoms. I'm currently doing okay, the pain level is bearable and I'm even off all of my prescription pain meds for now (morphine, fentanyl, gabapentin), it stings like a b*tch but I can deal with it. I'm able to be active, I have full mobility, you wouldn't even know that I have terminal cancer if you saw me on the street (except for my funky hair & chronic fatigue) and I'm in much better shape than many other Stage IV patients I meet in my support group, so I just need to take full advantage of that while I still can. I'm just disappointed that it seems like I only got two months progression-free after chemo, and that I may be one of the rare ones who don't respond to H&P (which was hoped to actually extend my life). I'm really grateful that I've had a few months of feeling okay because it was a long hard fight to get here, I'm just really bummed after having such a good response to Taxol, I had hoped for an equally good response to H&P. I guess part of me is also afraid that it's going to be as fast as the last time - one minute I'm perfectly fine and the next minute I'm in the hospital fighting for my life. But I guess that's better than a long slow decline anyway.
Truthfully I haven't had a decent night's sleep in two months and it's making me cranky - partly due to anxiety I'm sure, and partly due to brutal pain in my hips, knees and feet at night, I've tried everything OTC I can think of - melatonin, MMJ, lavender EO - nothing seems to help. I don't want to start a prescription sleep aid because I'm finally rid of the chemo brain and opioid fog and I'm enjoying having a completely clear head for a change. Hoping that after my consult this week, maybe things will settle down in my head. I just don't know if it makes sense to stay on H&P if it's not working. The SEs aren't fun, but I'm willing to deal with them as long as I know that there's a point to it.
Didn't even bother scheduling a follow-up to the MRI, will discuss results at my regular consult this week. Just focusing on planning a long-overdue and much-needed vacation for both of us now that I'm up to it, enjoying the first fruits of my tiny garden, enjoyed a beautiful walk on the beach with my honey yesterday followed with some amazing fish tacos for dinner. Nature has always been very healing for me and I used to spend much of my time out in the wild, so I'm really looking forward to our upcoming vacation. A bit more tame than my usual style but had to make some adjustments to account for my health.
Hope you are all doing well!
IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down.
9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC)
9/25/2017 Taxol (paclitaxel)
2/5/2018 Perjeta (pertuzumab)
2/5/2018 Herceptin (trastuzumab)
11/25/2018 Taxol (paclitaxel)
1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall