Today I had my last radiation treatment. Which means I'm...done. Well, I mean, barring follow up appointments, which might mean another CT scan, hopefully means taking out my port sometime soon, and having to take Tamoxifen forever and ever amen...I'm done.
*is overwhelmed*
Y'all it's been...seventeen months. I first noticed a lump in March 2015. Negative mammo and ultrasound in May, another negative ultrasound in June. Going back to the doctor on... *checks* ... Wow. Wow, I went back to my doctor for the "I really think I should go see a surgeon, please" appointment on July 28, 2015. That's...tomorrow, a year ago.
You know, if an author ever wrote that shit into a book, I'd tell them to take it out, that life doesn't work like that. Life absolutely fucking works like that.
So, yeah, it's been a YEAR. Exactly a year.
Anyway, tomorrow a year ago, I went to see my doctor, who sent me to a surgeon, who sent me to get an MRI, which came back positive, which led to a biopsy, which came back positive on 11 September 2015. Then double mastectomy, port surgery, six months of chemo, plastic surgery, six weeks of radiation...and I'm done. I'm done I'm done I'm done. The day before the anniversary of my appointment asking to see a surgeon. The day we nominate a woman for president.
I've lost...a lot this past year. But I've gained the certainty of the strength and compassion of the community that's had my back for a year. I don't know what I would have done without y'all. I was at the Romance Writers of American (RWA) conference a couple of weeks ago (where one of the books I edited won a RITA Award!!!!!) and I would look out over crowds and think, "These are LITERALLY the people who've fed me for the past nine months." That's some powerful shit right there.
So thank you. Thank you to everyone who's sent me hearts or hugs over Twitter or Facebook. Thank you to everyone who's sent me a lion or some tea. Thank you to everyone who contributed to my Factor 75 food fund. Thank you to everyone who came to stay with me and helped me through my weeks of chemo, helped raise my boys. Thank you to all of you out there. I literally could not have done it without you. Thank you thank you thank you.
And now I'm going to sleep, to heal, and hopefully to live another 45 years. I love you all.
Hey there. It's been brought to my attention that's it's been a while since I updated. So here I am, updating. :)
I finished my last chemo on April 8. I...do not even need to look that up. Huh. Anyway, so, it's been six weeks. I'm still sleeping way too much (or, you know, a lot), and I still tire really easily, but I feel much better. I got this wave of energy 3.5 weeks after I finished, and it comes and goes (I got hammered with a return of the peripheral neuropathy yesterday), but I definitely feel so much better not doing chemo every week. Understandably.
A couple of weeks after I was done with chemo, I went to see my radiologist, who was telling me the process and said at the end, "And the last week of radiology, we focus specifically on the scar, because that's where the cancer likes to recur most." And I was like, "But I'm getting my scar redone. Surely it's better to get it redone first so that you're targeting what's actually going to be there?" And he couldn't give me an answer. So I went to see my surgeon...and he couldn't either.
But my surgeon DID say that he didn't know if he could do what I wanted and I should probably see a plastic surgeon. And when I asked him if he could recommend a plastic surgeon in Fayetteville, he said no. Ooookay. :)
I have a friend whose husband is a plastic surgeon in Chapel Hill. He recommended two surgeons, and I called one. Dr Richard Carlino in Raleigh saw me during his lunch hour, operated on me after his regular work hours, and managed to do all this within a week of me calling, when he's got a three month wait time for an initial appt, let alone surgery. And he did an AMAZING job. So I had surgery two weeks ago, and I'm incredibly happy with it.
I did have about 12 hours of soul searching, wondering whether I should get breasts. Because I went shopping before my first appt with Dr. Carlino. Silly me. But I realized, more than anything, that my dissatisfaction with my body was that I'd gained 15-20 lbs (depending on how heavy my breasts were!). And now that I'm actually smooth, after Dr Carlino performed his magic, I'm really happy with my chest (if not my stomach under it!).
I now have a repeat of my appt with my radiologist on the 31st of May. Apparently radiology itself only starts 7-10 days after that? So...you know, right around my birthday. So I won't be done by the RWA, but I'm goddamned going anyway.
I've also had a revelation about the tattoos I want to get after I'm done. First that I can start on my right side after I'm healed from this surgery. I don't have to wait as long as my left side, because I'm not doing radiation on that side. And second, I had an idea about where to start. And I'm wondering if I should do that...well, now. :) I will think on it...
And that's the state of the Sarah at the moment. Thank you for reading along at home!
After 4 A/C treatments, each two weeks apart (Nov 6 & 20, Dec 4 & 18), then three weeks off, then 12 weekly treatments of Taxol (postponing third treatment for low bloodwork and eighth treatment because I was just too sick, so ending two weeks later than originally thought), I'm done done done done DONE with chemo!
I mean, you know, I have to get through the aftereffects of today's round. But I don't have to sit in that chair anymore, hooked up to an IV that runs poison through my veins.
YAY!!!!!
Next stop: radiation. I have an appointment about that in two weeks. Probably starting a week or two after that. Then clean up surgery probably six months after radiation. Then 4-6 months after surgery, I can start my ink. I'd prefer to switch the surgery and the radiation, honestly, but I don't know if that's an option, and I've got to consider scheduling everything around RWA (middle of July).
But! DONE WITH CHEMO! WOOT!
I'm so so SO looking forward to...having energy, getting my taste buds back, being able to have caffeine and (mildly) spicy foods, but most caffeine, growing eyebrows and eyelashes. Being...normal again. Being me. And I know all that stuff is going to take time and I shouldn't push myself or be impatient. But...well, I'm looking forward to it. :)
Droewors: A weird South African dried sausage type thing that really no American version comes even close to and it's THIS THIS THIS that I literally wake up in the middle of the night absolutely CRAVING. Orange truffles: Um, pretty self-explanatory? They're so good. And dairy free! Mint truffles: Equally good. And also dairy free!
These three things hit my "umami" buttons. Which is the only thing that really still tastes good to me right now. That and peppermint and ginger. But Umami is the...richness of savory taste? Like, umami is more a depth of taste and flavor, rather than purely sweet, salty, sour, bitter. It's...layered. And the droewors, with its cloves and meat and dried and rich taste, hits that. And dark chocolate hits umami too, somehow. IDEK.
So, while I love the lions I'm still receiving that make me smile anytime I see one which means I smile a lot, which is really great, my poor abused tastebuds, that can't figure anything out, still love expensive dark chocolate (dairy free) and ... droewors. Go figure.
Anyway, all this is to, you know, rather backhandedly say, IF you're moved to buy me something to cheer me up, which is by NO MEANS expected in the slightest (especially after how y'all broke Factor75 and I'll be doing a review post of the [mostly] amazing food I've eaten from them so far), those are three things that would incredibly appreciated. As would Amazon GCs, more lions, or just, you know, pictures of something silly or reading a book you love and telling me about it. :)
And (after a nice reminder from someone on Twitter) my email address for Amazon: sarahsglyons at gmail [And my snailmail address]6317 Lakehaven Dr, Fayetteville, NC 28304
My chemo regimen is 4 doses of A/C each two weeks apart, then 8 doses of Taxol each a week apart. I'm (obviously) done with the A/C (Nov 6, Nov 20, Dec 4, Dec 18). I've done four doses of Taxol (Jan 8, 15, skip a week, Jan 29, Feb 5). I skipped a week because my blood work was too low. It gets tacked onto the end, so instead of ending March 25, I'm now ending April 1, assuming I don't have to skip another week. The week prior to skipping, I had a low-grade stomach bug I caught from Isaac. I'm pretty sure this week I've had a low-grade cold. And right now I feel utterly exhausted. Totally just wiped. I've slept 10 hours every night for the last week (thank you, Carey, the person who came to take care of us this week!), and I'm still exhausted. Thursdays are supposed to be my day with All The Energy, and I've mostly lain around on the couch doing nothing, because basically unable to move. So...I'm not actually particularly hopeful about my bloodwork tomorrow. Which will mean, yay, a week off to recover. But will mean that my last day will be April 8 instead...
Um. So. This was supposed to be a "Yay, I'm halfway done" post. But...you can see what's more on my mind instead. But...yay, I'm halfway done?
Except, honestly, 4 weeks of A/C and 4 weeks of Taxol means my brain thinks, somehow, yay, another 4 weeks of Taxol. Except...no, EIGHT more weeks of Taxol. And then I just want to die. And I KNOW it's 8 weeks. I KNOW. Except...I still think 4 weeks and then want to die when I have to correct myself to 8 weeks. Eight more weeks. EIGHT. EEEEEIIIIIIGHT. Eight eight eight. Eight more weeks. *cries and cries and cries*
Because yeah, the Taxol is less taxing (ha) than the A/C. But it's every week and it's cumulative. And I know I've only had four, but this last week was fucking grueling, and if the next eight are gonna be like that I might as well just...I don't know. I don't know. :(
People, you BROKE Factor75. I had the founder and owner CALL me today to make sure I was really a person, and to see what else he could do for me. He wanted to make sure I had his personal number and he'll be tracking things to make sure the food gets to me okay, and he's put me on a list for...I don't know, test food, or something? Just...just...
I'm so overwhelmed, so grateful, so blessed to have you all. And I can't begin to thank you all for EVERYTHING you've done for me. I mean, the food is...huge and unbelievable and overwhelming and thank you -- I will now have worry-free food for quite some time. And worry-free in so many ways: it'll be there, it'll be cooked, I'll be able to eat it, there'll be enough for my kids, it's good for us. No worries anywhere.
But that doesn't even begin to cover everything everyone's done for me, even if it's sending me a cute lion picture in an email saying you're thinking of me, or little gifts (my house is filled with lions!), and And thank you thank you thank you, everyone.
And...I think I've got enough food for now. :) So thank you so very VERY much.
On Friday, I got my second Taxol treatment. I've got 10 more to go, one a week for the next 10 weeks. As promised, this IS less arduous than the A/C treatment, but it's EVERY week and it supposedly builds, so it's all a bit...ahhhhh for me right now.
I've got people coming to stay with me 6 out of 10 weeks left. And I can't thank those people enough for volunteering to come stay with me and help me out, some of them for the second time. But here's the thing: I've got no one staying with me for the other 4 weeks, and, honestly, I'm kind of scared about how I'm going to be able to handle it?
The biggest thing, I find, is food. And everything to do with it: PLANNING it, and grocery shopping, and cooking it, and washing up, and just...everything. Add food and kids and chemo exhaustion together and I'm close to tears most nights.
So, I've found a thing. It's called Factor75, and it's a food delivery service. Completely prepared and cooked dishes, delivered every week. And I've consulted with people about asking for help, because it feels kind of...weird? But, like...if my community were geographically-based, like a church community or something, this is precisely what would get handled, right? So...asking people who might be so inclined to contribute a few dollars to helping me buy some food is kind of like asking them to make me a casserole dish I can put in the freezer? No one's obligated, no one is required, and, bonus, I don't have to worry about my allergies?
ETA: I can't begin to express how much the outpouring of support and love and, well, gift certificates means to me. I've got enough now for food for myself and my kids for all of my treatment, and I can't even begin to thank everyone enough. Thank you thank you thank you.
And the folks at Factor75 are taking amazing good care of me. I can't recommend them highly enough if you ever need them, too.
Came on here to write a long-overdue update and found this as a draft: "If I'm my best self -- or trying to be -- and that best self is never enough...or sometimes it's too much...what's the fucking point of anything?" I have no idea when I first wrote that, but yeah, that about sums it up. :(
So, it's been a while. How long has it been, anyway? *checks* Wow, two months. I last wrote the day after my first chemo treatment, apparently. And the fact that I haven't written since then...Yeah, that's how it's been.
Treatment #1 was bad, #2 was worse. #3 was exponentially worse than #1 and #2 together. And I expected #4 to be exponentially worse again...and it totally wasn't and yet completely was. Gee, Sarah, what does that MEAN? Well, #1, #2, and #3 felt like the flu (minus actual fever or upper respiratory involvement), worse and worse each time. My lymph nodes were up everywhere -- and I mean EVERYWHERE, ALL of them -- I was touch sensitive, had photophobia, and just felt like a truck had run me over. I lost days. Had zero energy for anything. Slept a lot. And by Tuesday or Wednesday post-treatment, I came out of this...haze and just felt like a human again. #4 wasn't like that at all -- I just slept. Forever and ever. Two weeks later and I'm still just utterly EXHAUSTED. I keep thinking I'm out of it, and then I'm not and it just keeps going. Except, no, I really am getting better.
...and Friday, 8 January, I start the Taxol treatments -- every Friday for 12 weeks. They're supposed to be much lighter than the A/C treatments, but...I guess we'll see. I've sent out an all-call for people to help, because the one thing I figured out was that people here to help me really makes ALL the difference in the world for me. I had hardly anyone after treatment #2 and I think that made treatment #3 terrible. I had ALL the help ever after #3 and #4 and I think it helped make #4 not too awful.
I have a feeling this isn't too coherent. Oh well.
I lost my hair the day before my second treatment. Well, one thing they don't tell you is that it doesn't ALL go. Just...some of it. So I buzzed it, then shaved it. And I shave my head about once a week because the stubble is annoying, even if it's not much of it.
Food's been fine. In fact, because of the steroids I get during treatment, I pretty much eat anything not nailed down for a week after treatment, as long as I have the energy to make it (hence having someone to help me make it is really kind of crucial).
My bloodwork is fine so far, meaning I'm not having white blood cell crashes or anything weird like that. So, internally, on the micro-biological level, I'm dealing with treatment FINE. So that's good.
And that's me. Staring down another three months of this (and then radiation) and just wanting to...well, not die, obviously. Kind of defeats the purpose. But god, I'm so so tired already. I don't feel brave or fierce. Everyone wishing everyone "Happy New Year" just made me want to cry. 2015 sucked. It was full of so much loss -- and yes, happy things like cats and my lovely house, but generally just loss loss loss and then some more loss. And 2016 just looks like more of the same. And when people say, "But you're through the first two stages of treatment (surgery and A/C), and you'll be through the rest soon enough," I just want to yell at them, "OKAY, YOU DO IT THEN!" Because, yeah, you know, five months in the grand scheme of my life is...not much, but Jesus, five more months to get through. Plus another surgery to clean up my scars, make things even, take out my port. *hides and cries* So please just...don't say anything like that? Thanks.
So...lots of people say "fuck cancer." It even has its own hashtag. #fuckcancer after all. And "I hate cancer." I hear that a lot. With varying degrees of intensity.
And I feel like such a freak -- and maybe this would be different if I were, you know, closer to death -- but...cancer's just, like, your own body kind of going a bit crazy? It's not this separate thing? Like, there's not #fuckheartdisease hashtag. No one goes around saying "I hate ..." I don't know what to fill that blank with.
It's like cancer has become this sentient other, this invasive alien. And I mean, maybe it helps other people to think like that. But I don't? Cancer is this thing that my body grew. A BAD thing, don't get me wrong. But just...this thing that needs treatment. The same as the flu...or the endometritis (child bed fever) I got after Thing#1 was born that required 36 hours of IV drugs. Diagnosis then treatment.
You know, I did everything I was supposed to do to avoid breast cancer. Not on purpose, but I had a child at 25. I breastfed for 2 years combined. I was on birth control from 16-23, but not after that ever. No synthetic hormones since then. I don't smoke or drink or do drugs. As I keep telling everyone, I'm DISGUSTINGLY healthy...except for the cancer. And it happened anyway. And it's horrible and treatment is going to fucking SUCK. And I'm angry that this thing happened to me, and I'm allowed to feel that anger. But I'm not angry...at cancer, this disembodied thing. I'm not angry at myself either -- I don't think I caused this like if I'd smoked for 50 years and had lung cancer. If anything, I'm angry at the world we live in, filled with plastics and chemicals and insecticides and toxins. THAT'S what's doing this. And so we can pour money into research for "cures." But really, we HAVE a cure: mastectomy, 4 rounds of A/C, 12 rounds of Taxol, and then 33 sessions of radiation. There's no vaccine for this. There might be prevention -- if you want to go live a life off the grid, only using completely natural ingredients for everything. But...you know, I like my modern life. I like plastics and computers and microwave ovens and food I don't grow myself and chlorine-filled pools and vaccines and the thousands of little things that probably contributed to me growing my own personal cancer by age 41. So...really, is this just the price we pay for the life we live? I don't know. I don't know.
But I'm not angry at Supervillain Cancer. And I'm not angry at myself. I'm scared and tired and don't want to go pump myself full of poison on Friday. But I will. I will. And I'll take my computer and my phone with me and stay connected with my community *literally* all over the world. And maybe that'll all balance out.
