Before I forget: I made two new info pages, Coping & Surgery Decisions. If you know anyone who could use them, feel free to send them over!
Back to the latest.
So...party's over. I've had a relaxing, calming, rejuvenating, back-to-normal 3-week break from surgery and treatment. But yesterday, my oncologist confirmed I'll be returning to the chemo chair, or bed, which I prefer. Not being picky or anything. I'd also prefer NOT TO HAVE TO DO MORE CHEMO.
I told everyone under the sun that I wasn't done enduring the disgusting drugs; that having chemo on the "backend" (as the docs call it) was all part of the original plan. There had been, from day one, only a small chance of me skipping it. Truthfully? I got my damn hopes up. I thought since they'd achieved clean margins and my node was clean as a whistle that maybe, just maybe, I could go right into radiation and I could be done with everything by Christmas. A Christmas Miracle! When my oncologist told me this was not the case, I cried a little in front of him, for the first time.
Tears don't flow too easily at Dana-Farber, because you feel so cared for and secure in their confidence and experience. My tears usually come on the ride home, when the realism hits me, when I start to worry about being too sick to go into work after already having had a break, or I think of losing the hair on my head again that had just started growing back to the point I could see color.
Thankfully, this time the tears didn't last too long because I realized, Fine. If we need this last blast of assurance that they're wiping this out of me, then I'll do it. And I won't ever have to look back and think: maybe I should have had more...just to be sure...
I am grateful it's 8 weeks instead of 12. It's four dose-dense treatments instead of 12 in a row, like last time. I'll get a week to recover in between treatments. These drugs (AC) cause more nausea, so I will need to stay on top of that, and I've been told to "get ready to sleep" while at the same time, "you won't be able to sleep from the steroids." Sweet.
Huge thank you to a couple friends who gave me gift cards to Green Light; I will be drinking ginger-infused juices and smoothies like it's going out of style.
What I'm not feeling is desolation, or hopelessness, or too much anxiety, which I've been swallowed by in the Past. Now, it's a resolve to get through the next 2 months, then a 3-week break, and then radiation through early January.
Then, then, 2017 is going to be my year. I just know it.
Working in web marketing, I should know more than anyone that what you fancy on the Internet - all the accounts you follow, all the posts you linger on but don't even click, and all those links you do end up clicking on - all that juicy information is recorded and noted and filed away so that the Internet, the MAN, comes to intimately know what you're into these days.
So it should come as so surprise to me that all the bait I've clicked ("can't help it!" my finger whines) the last few months, all the articles of horror and cancer woe, have led to certain solicitations, to certain suggested accounts. E.g. when Instagram whispers on my feed, "Hey! You like Somber Cancer Shit, how about you follow, "@CancerSUXXJourney!" and "@heyletsprofitoffyourfears!
Point is there are days like today, and the last few days, where I'm untethered from the cancermindedness workshop (party of 1). Every waking thought and worry is not dedicated to the condition, and every image and story and article sought out on the interwebs is not leading down the rabbit hole to a cancer article, or a sad tale of a mother who leaves her 18 children behind, or the Humans of New York Sloan Kettering pediatric cancer series. (It was very poignant and well done, but by God, the timing of that! Just get me a noose. (Kidding, kidding.)
And lately when I have been feeling better, truly, when I'm distracted by real life and talking about typical everyday topics, the day flies by and I think to myself, wow. I feel good. I feel sane. I feel like myself. I swipe through Instagram and one of those accounts will pop up and I look back on those horror-seeking episodes and feel very, very weird about myself.
And feeling weird about myself like that is good. So good. Because to put it another way, the last few days I've been feeling NORMAL. I've had off of work to recover from surgery, which has been going wonderfully, I've had free time to write and to sleep and to read, and to take stock of our new house, and play with my dog and go on walks with friends nearby, and have coffee and not think, for very long stretches at a time, of what I just had cut out of me (clean margins and all!) and about what I really hope isn't laying dormant in other parts of me, along with all the treatment that's still to come.
Normalcy. It's so utterly wonderful, and I don't say that with any hyperbole. It's just so breathtaking. And all you Normals, all you people don't think twice about your normal day, days when errant cells are not on the brain and instead problems like running out of gas, or a hole in your shirt, or a traffic jam flood your lucky, normal-ass mind and soul. AH! How good it is to be one of you. Even if it's for a few hours.
Included in a care package from my co-workers: gift cards, chocolate, and this bad Larry right here. Ha! Love them ❤️
After a very long day of waiting yesterday, due to the miscommunication of surgery times. I had my lumpectomy at around 3PM when I thought the whole process started at 7:45AM. I was mentally prepared for 7:45AM. Cue me having a (quiet) hangry hissy fit after having no liquid or food from 10PM the night before until I woke up, around 6PM.
For some reason, as I'm going in for MRI's, or speaking with nurses or techs, their number one question is, "How did you find it"? and I feel maybe I should get that out of the way? Mike found it! I know it was blasted out on the Jimmy Fund telethon and everyone has a mental image of me being fondled by my husband, but I thought it was worth repeating since almost everyone asks me. [Here's another page about another question I get a lot: why change your mind about which surgery?]
Anyhooters, I'm left with two scars and some soreness, mostly under my arm pit where they took my sentinel node. The definition of "sentinel" is this: a soldier or guard whose job is to stand and keep watch. And when it comes to your lymphatic system - which is part of your immune system - the sentinel nodes are the first road out to the rest of your body. They removed three of them to see if there was any cancer, and I'm so very happy to report: they were clear! If any cancer was found there, it would indicate it had spread outside my sweater puppy.
Now we wait on pathology for 7-10 days to see if what they scooped out has clear margins (no sign of cancer on the edges of what they removed). I'm praying those are clear as well.
Due to the grade of my tumor, which is the highest possible (3), and my status (HER2 positive, an aggressive form), I'm pretty sure they will put me on 3 more months of chemo before 6 weeks of radiation. Which blows, because some of my hair is growing back, and I'll just lose it again. But if it's a blast of assurance that they get all of this out of me, I'm more than willing to do it.
Fun things about yesterday: Right before going under, the anesthetist quickly told me that she went through what I did two years ago, and she is doing great, and that she was going to make sure I woke up without pain. Literally, I had a minute before the drugs kicked in but I looked up at her beautiful face, her full head of hair tucked back into her cap, and her bright smile, and I was given a huge surge of hope. It's a great way to go down. Especially when you wake up telling your nurse all about the cranberry bog you were just walking on, convinced you'd just left a little stroll, just minutes ago! Then I asked for cranberry juice, not remembering what I'd just said. The nurse just laughed at me.
I’m back. Mostly. Like Billy Crystal's, “He's only MOSTLY dead!” but in the reverse. Day by day, I’ve been feeling brighter. More energetic. Less doomed.
I’ve got my goddamn ducks in a row and I’m ready to go. I have some strange antibacterial soap to use the next two days, I’ve got packets and pamphlets of lumpectomy pre-op and post-op instructions, and I’ve got a folder to put it all in.
I learned today that they basically stick a clothes hanger into my boob (a wire), which will guide the surgeon to the tumor that has shrunk so much we can’t feel it anymore. I’ll be gonzo during this - likely drooling large amounts of saliva, as I’m wont to do when I pass out - for about 1.5 hours, during all the cutting and gore.
Then, I go home and wait. It’ll take 1-2 weeks to find out if they got all the nefarious shit in there. Or as my nurse put it today, “to tell us if we can close this book on your surgery.” Please close that freaking book. Please. If not, they either go back in and try to scrape more, or it’s back to the mastectomy route.
Then there’s still a ways to go. More chemo, for 3 whole months, and 6 weeks of radiation after that, to be exact. Fortunately, my head’s on straighter than it was when I took a dip into the dark abyss the last few weeks, and I’m ready now.
I think Labor Day weekend, and the supposed “vacation” we had, really fucked me up. It wasn’t just all the background trauma going on, it was realizing my eyebrows are flying off my face, it was realizing that this may have been one of the last summers a majority of my friends won’t have spawns cooking in their stomachs since we are “at that age.” It may have been one of the last summers I wouldn’t have felt left behind.
If I had to see one more picture of Ember and the live music and the fun everyone was having, any more “this was the most EPIC summer ever!” proclamations, I thought I’d off myself right then and there. It wasn’t FOMO, it was just MO. I was MO’ing a whole lot of stuff and it SUCKED. I knew it would suck but it SUCKS.
But for the most part, I’m over it. Because feeling pressure to still try to want to do these things? Also sucks. Just accepting that I’m not going, that I’m staying right here, thank you very much, dealing with my own disasters, seeing people on my own terms - that’s more like it. Not checking Instagram or Facebook. Instant relief. It’s simple really, but don’t we just torture ourselves?
This next couple of weeks I have off work to recover. I am going to open up that novel I wrote (which sucked, and sucked less after a couple people gave me feedback) - and I’m going to continue to improve it. Mike thinks I should submit “Mouse” somewhere. Before I was very trepidatious and meek and down on myself about these things, but seriously? Fuck it. If I publish it on Amazon and 3 people read it, I’m happy. Because three people read it!
If anyone wants to read a rough draft (it’s a thriller!) please let me know. I’m not embarrassed of it anymore! PEACE.
Over the last week, the prospect of sitting down and writing a blog update exhausted me. I know I threw out a grenade last week - announcing my mom's surgery - and I left that there to sizzle and stir up concern. Sorry.
So, a quick update on that: she is home recovering. She came out of it, and two hours post-op she was playing (and winning) Words with Friends on her Kindle.
A huge reason I couldn't come back to this blog and simply say that, is that I was ashamed. I should have been elated about my mother coming through, I should have giggled about her scar and appeared upbeat, but I was too far gone, too low, too consumed with fear and hopelessness about her and more selfishly, about myself.
When someone as close to me has what I have, in the advanced form, how do I separate myself from that? How do I tell myself I exist in a different sphere while at the same time everyone is asking me to be there, live it, watch it happen? How do I tell myself I am different? Why do I even deserve to be different?
How low I fell into a hopeless funk. I even went back to my first few posts, from April/May, and my own words seemed foreign to me, written by someone else. I turned them over in my mind, and with a lot of ugliness I thought, "How naive. Who is that person?"
I didn't foresee that too many people would be expecting too many things of me, and that in the face of these people asking me for support, I could not deliver. I'm ashamed to say that I shut down. And because I could not give anything to those who have given so much to me, this failure plummeted me further and further down into a hole.
And I started wondering - and this was not some hypothetical or rhetorical or whimsical or comical wondering - I seriously wondered if life would ever be okay again. If I would ever be free of worry, free of sorrow, free of pain.
God, how depressing, I know. This is not how I wanted to come off on this blog - I wanted to be strong and inspiring and positive.
But it's not all depressing, I swear.
This is because the other night, there was just the faintest crack, the faintest opening.
I met a woman who went through treatment two years ago. My best friend, in her wedding dress, pushed the two of us together and said, "Nikki, this is who I told you about."
This woman, after a small exchange of logistics and diagnoses, said, very plainly: "No one tells you how long this road is. No one tells you. But you'll come out the other side. Someone told me that, and now I'm telling you that."
Then this woman, this stranger, gripped my shoulders, looked me in the eyes, and repeated, "You will come out the other side."
And I just stared at her, still a bit numbed from whatever scrim of sorrow still lay over me.
But slowly, I nodded. She was so sure of herself without being preachy, and I couldn't help but believe her.
Her taking me by the shoulders like that caused me to have a flashback. I remembered someone doing something similar to me.
After my first mammogram, which came after finding the stupid fucking lump on my boob, I had my first biopsy. It was my 31st birthday, and I was crying. I cried as he plunged the long needle into the side of me, and I cried as they bandaged me up.
The nurses and doctors had stopped assuring me, at this point, that it was "probably nothing," and "You're so young, it's likely just a cyst." I spent a lot of time in a heated pink robe waiting and filling out the same information. Please enter any family history of cancer. One sheet had only three lines. I wrote in tiny lettering, and then down the side of the paper.
At that point, I was still not used to doors softly being opened and shut, nurse practitioners and ultra sound techs and radiologists smiling meekly at me. I smiled back as I thought of dying; I thought of how cruel this world is sometimes. I thought of days on the beach when I had not a care in the world.
Afterwards, the radiologist, an older man who'd been docile and emotionless throughout the biopsy procedure, came in to give me his card and send me on my way, adding that the results wouldn't be in for another 3-5 days. I was silent and still crying, I could only nod.
Then, suddently, he took me by the shoulders, just like that woman took me by the shoulders, and looked me in my eyes. He said, with ridiculous conviction, unequivocal conviction: "Whatever happens here, whatever the results - you'll be okay. You are going to be okay."
I don't know how he knows, I don't know how that woman knows, and ultimately, I don't know how I know, but for fuck's sake, they're right and I have to believe that. It'll be okay.