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Jul 28, 2018 04:20AM
Kate, I'm so sorry you have had the "medical mystery" saga! Hoping it resolves soon.
Erin1980, when I was first diagnosed a friend who had been through it told me that "cancer is a major inconvenience". I thought that was odd as wasn't it mainly about being a terrifying life and death disease? The answer is yes, but also yes! It is impossible to make plans, you have little control over prioritization -- when a doctor says drop everything and come in, you do. It is indeed a TOUR, haha.
My levels of "fed up" ness have been high at two points during chemotherapy. Point #1, after Cycle 2 I caught a GI bug that landed me in the hospital for two days and a night, and was just utterly miserable. Safe to say I now understand how a person could die from diarrhea. Point #2, turns out I had a salmonella infection the last time I wrote in, after cycle 6, which meant I just felt worse and worse for days on end. That was an important lesson for me in calling the oncologist's office when things don't seem right -- I never had a fever, just moderate diarrhea and the feeling like someone was ripping my guts out of my body frequently. I just felt BAD. Even though by the time I got it cultured it started to improve on its own and I didn't need further treatment, just knowing that it wasn't the chemo alone making me feel that awful made me feel psychologically much better! I wasn't sure I could face that feeling even two more times. I seriously laughed in glee and told the overnight fellow who called me with the diagnosis that I was hugely relieved to have salmonella. Add that to the list of things you never thought you'd say, thanks cancer!
When I started chemo they said to expect that fatigue will be cumulative, hitting harder cycles 6-8. This has indeed been the case for me. I can get through the days at work, get my kids to bed, barely eat dinner and shower, then I'm out of commission. It's okay, I just have to adjust my mental models a little bit as to what I can get done. On the plus side, because I'm going to bed so early when I (often) get my 4:30am insomnia I just get out of bed and start my day. Not a big deal.
Treatment #6 started to feel like I was going to make it through, that the end was on the horizon, even with the salmonella incident. I think part of what makes chemo so hard is it lasts for so darn long, and from the outside people sometimes think you "are fine!" "look great!" and all those other things that make you feel alone in your experience. People wanting you to be normal when you know your life is radically changed. We are here together though, we're not alone.
Infusion #7 was yesterday, and I'm awake most of the night so far from the steroids they give. Again, not a big deal, just hoping for some good naps and not too hard a crash over the weekend, especially as my brother's family is visiting and I'd like to enjoy at least some time with them.
On the subject of headaches and hydration, the NP yesterday suggested that I add coconut water to my beverages for electrolytes. Even though I've been drinking a ton of water, she said that alone might not be enough and the headaches I get throughout the cycle are probably dehydration. Duly added to the fridge. Another good learning from yesterday's visit to MSK was that I had very puffy eyelids and watery eyes for 4-5 days in the last cycle, my MO said it could be that I have lost eyelashes, and that my eyes are having a harder time warding off normal things like pollution, dust, etc. She said your eyebrows and eyelashes might lose hair later than you lose hair on your head (my head hair loss was greatest in cycles 1-4 or maybe 1-5, it's definitely slowed and still not terribly noticeable as long as my part is sitting okay and I don't pull my hair back too tight), so that could be why it is new. Recommended cold compresses and saline eye drops (not visine which has something in it).
As for CMF versus other regimes, I was just thankful that I was candidate for what seems to be the lowest toxicity option. I trust my doctors and the entire MSK institution quite a bit to know what is right. Also, the recurrence prediction scores and impact from chemotherapy that come with the OncotypeDX test are based on CMF. And I am so thrilled to hear from some sisters who had it so many years ago. Goodwit, very best of luck with surgery, wishing for good outcomes for you.
DX'ed at age 41 on my first mammogram
1/11/2018, IDC, Right, Stage IA, 0/4 nodes, ER+/PR+, HER2- (FISH)
2/6/2018 Mastectomy: Right; Reconstruction (right): DIEP flap
9/2018, IDC, Right, <1cm, ER+/PR+, HER2-
10/4/2018 Lumpectomy: Right
Whole-breast: Breast, Lymph nodes, Chest wall