my mind feels heavy

I have another terrible headache. I think I mentioned that previously. I feel awful. I’d like to just stay in bed all day, but we are supposed to be meeting N&N at four to celebrate Nancy’s birthday. I feel bad, because I am not at all enthused, and would love to bail. Can’t do it tho – because it’s just the four of us, and I can’t ruin her birthday celebration. Suck it the fuck up, buttercup.

I’m in a weird place with my relationships right now. I love my friends, and am so grateful for them, but interactions feel draining. There are only a few with whom I feel totally comfortable anymore, and like I don’t have to put on a happy face. It’s just a phase, I know hope.

Do we even have kids anymore? There is very little difference anymore as to when they are here and when they aren’t. They are growing up, and don’t need us much anymore. They do like to come down and hang with us while we make dinner, especially Freya. They love to listen to D and I talk/our banter & gossip. They think we’re fun – this is their word, not mine, and they tell us often that they enjoy their time at our house the most, which I’m slightly ashamed to say gives me a small thrill each time I hear it. It’s not a competition, of course, but divorced parenting can be difficult, especially since we can never truly know what’s going on in that part of their lives when they aren’t here, and it’s good to know they do love being here with us.

I really think it boils down to something quite basic: we have a more traditional family dynamic here, which their other homes lack, and given their ages now, I don’t think it will be the same if/when that changes. We’ve all been together since Frey was 6 and Jack was 2. That makes a huge difference. They don’t remember their lives before this.

I went down a rabbit hole over the past few days, reading the Breast Cancer Foundation forums. I’ve been reading up on my particular type of cancer, which is a rarer type, and more difficult to hunt down and treat: invasive lobular carcinoma (ILC). ILC likes to move to weird places, like the stomach, and the linings of various organs. It’s difficult to see on scans, including PET, and now I’m convinced my condition is worse than the docs believe, because they can’t see it. I’m considering a consult with the nation’s leading ILC expert, who is at U-PENN. I’d like a second opinion.

It’s time to take charge of my health, like for real this time. I’m not just talking about exercise and nutrition. I mean researching and getting second (and third) opinions and just really digging into my care. Metastatic breast cancer is like a full time job. It’s tough managing this and my law practice. I feel overwhelmed. Sometimes I just want to hide under the covers. I find myself craving silence and solitude.

My to-do list grows ever longer.

I suppose I should go shower and start the long process of making myself presentable for our friends.

I’m not unhappy. I’m really not. Just extremely fucking exhausted – in all senses.

It’s hard to read tone. I’m grateful for each day. Never forget.

Marked

I like that you can see the marks left on my body from cancer. My port scar from chemo. The cancer boob with the slight dent. The mandala tattoos where nipples should be. The tiny black radiation tattoos on my chest and stomach. The tiny scars on my stomach from my hysterectomy/oophorectomy. I hate on my body a lot, I know, but this bitch has fought hard and is not only surviving, but thriving. I’m now, at 41, finally learning to be comfortable in my own skin. The scars, the wrinkles, the extra fat around my midsection – I’m thankful for all of it, because it means I’m still here.

other news

I am working today (boo), but I am off tomorrow. I look forward to a long weekend.

Tonight, D & I are having a night in the city. We have reservations at one of our favorite patio places, and staying overnight at the Chase. Birthday 2.0.

I have a feeling we won’t be able to go out much longer. Shit is getting real here in MO. In fact, the county we live in has the highest increase in cases, which is not surprising to me at all.

Back to my birthday: Birthday 3.0 will happen on Saturday night, when C&J come over. I’m excited about that, too.

I am spoiled.

At my oncology appointment on Tuesday, my doc told me that he is moving from my preferred hospital, and will be retiring next year. He’s going to introduce me to a new oncologist at my next appointment. D looked her up, and she is relatively new, which I’m actually kind of pumped about. I think I will have an easier time communicating with her. I would sum up my current doctor by saying he needs to talk less and say more. He always buries the lead with a bunch of blah, blah, blah, and completely confuses everything. It doesn’t inspire confidence.

He also told me that my case is going in front of the tumor board next week, which will review my current treatment plan. Neither of us anticipate them making any changes, given my current NED status. He also had blood drawn to send off for genetic testing to determine whether I have any mutations which would result in certain treatments being more or less effective. I’m happy about both of these things, as I’ve been wanting them from the beginning.

Bizzy went to doggie daycare for the first time since quarantine started. He was sooooo happy. He actually screamed. I don’t know how else to describe it. He gets to play all day, and he is staying over tonight, so that D and I can do our city date.

The plan for my day off tomorrow? Lounge about and watch scary movies – unless my husband has other plans for us. Maybe do some reading. I’m still reading A People’s History and recently started Mexican Gothic. I’m thinking about purchasing the entire Babysitter’s Club series as well, but it is pricey.

I’ve actually felt better since I’ve been off Keto. This happened last time, too. I don’t think my digestive system can handle it. It sucks, because it is such an effective method of weight loss. I don’t know what to do. Maybe I’ll try to eat lower carb, but not so low carb that I actually go into ketosis? Idk – I want to be fitter, but I don’t want to obsess over my weight. I look good, right? Right.

I’m not going to spend whatever time I have left hating myself, and I don’t want to waste time feeling bad for reasons I can control. I feel plenty bad enough without creating more problems for myself.

Also – that ass… I’m not getting any complaints. lol.

I really do need to get that treadmill moved to my house though. I should work on that tomorrow.

Okay – I am being boring now, and I need to pay attention to this hearing, so bye. Happy Friday eve!

do not recommend

The ENT put a camera up my nose/down my throat this afternoon, but only after he sprayed this nasty Affrin/lidocaine solution into each nostril as I inhaled. The entire experience was very unpleasant. He didn’t see anything concerning, but given everything going on with me, I now have to get yet another CT scan. He did also say that this wasn’t related to me not taking my nose stud out – that something is going on, he just doesn’t know what, but that I shouldn’t be alarmed. (lol ok)

My throat didn’t hurt before, but it def does now. lol. Also – sigh.

Tomorrow afternoon, I meet with my oncologist to go over the results from the PET. Send me good vibes, please.

we remain in limbo

I don’t have all the results from the PET yet. It’s a long story, but I have to wait until Tuesday afternoon.

BUT – my doctor called this afternoon to tell me that the preliminary report shows no evidence of metastatic disease in the bones. He didn’t mention the lymph nodes – not sure that part of the report was ready?

No evidence of disease. NED. The words every cancer patient wants to hear.

I’m trying to not get too excited. After all, hope is a bitch. Plus, we have a couple of other things to look at in more detail next week. Some weirdness with my throat imaging, though I think that’s from me forgetting to take out my nose stud, and nobody noticed because of my mask. Metal can fuck with the scan. Ooops. But now I’m seeing an ENT on Monday afternoon just to be sure.

I can’t explain how I feel.

For the record, while this is definitely good news, if accurate, I am not cured, and will never be cured. I will never stop treatment until the day I die. I still have cancer. This just means that the treatment is (hopefully) working. If it’s gone, it will be back. That’s just the way it goes at this stage in the game.

But maybe I have more time than I thought.

I almost didn’t even mention it, because I feel like the rug will be pulled out from under me on Tuesday.

But like D said: let’s at least enjoy this good news while we can.

My nurse actually said the words “this is very exciting.”

Surreal.

Also – I think I have a migraine. Everything is too much.

low

I woke up around 4:30 am this morning, and read that Kelly Preston died yesterday after a two year battle with breast cancer. It fucked me up. I started crying; had to take a Xanax to calm down. I keep tearing up. The last few days have been difficult, and this is just really messing with my mind right now. It doesn’t matter who you are or how much money you have – this shit always gets you in the end.

I’m trying to stay strong and positive, but it is becoming more difficult.

I have a PET scan scheduled for Friday morning, and then will meet with the oncologist on Friday afternoon where we will discuss the results, tweaking the treatment plan if necessary.

It’s hard to carry on normally in light of all this, but I just remind myself that this journey is going to be a roller-coaster. I just have to hang on and make the most of it.

People ask me how I am, but how can I answer that question honestly?

It’s such a complicated question.

A few words come to mind:

Contemplative, quiet, melancholy, weary.

But those are just imperfect words that fail to adequately describe an impossible situation.

I feel like I have to be guarded with how I spend my time. I only want to give it to certain people, and it’s not a long list.

I’m having a hard time responding to people – even my best friends. I don’t want to talk about this shit, but what else is there even to talk about? Pandemic life is boring af. I feel like I’m sitting here watching my life go down the drain. All our plans on hold, and maybe we won’t ever get to realize them now thanks to the pandemic.

Oh and let’s not forget the anger. So much anger. Always there, ready to boil over. I was diagnosed with terminal cancer, which was a huge blow. Only to then have even more dreams and plans dashed by a fucking pandemic. For fuck’s sake. I can either sit around and cry or I can use my anger to fuel me. I choose the latter.

Here’s why it’s impossible to adequately convey how I feel, because despite everything I’ve shared previously, I’m not unhappy. I laugh every day. I have fun with my husband. I enjoy being alive and spending time doing the stuff I love. Mostly I’m just quietly sad, resigned, physically and emotionally exhausted, but still seeing the beauty in everyday. I feel joy every day; maybe more than ever. I now take more time to appreciate a purring cat, how it feels when my dog kisses my hand, a long hug from my son, or the slow breathing of my sleeping husband and the way his skin smells. These things feel more important than ever, and I’m lucky to fully appreciate their wonder.

I’m still working on improving myself and on various mini goals. But I’m also giving myself space to be my imperfect self with less judgment. I’m trying to allow myself to really feel my feelings – whatever they happen to be at the moment – and wow do they change constantly. It’s mood swing central over here.

Does that make sense? Probably not.

I don’t really think you can understand unless you are dying too. That’s the brutal truth.

But thank you for asking. Even when I’m quiet, your support is seen, felt, and appreciated. ❤️

I’m ready to talk about it

I have a lump in my cancer boob.

My doc was like: well it could be a cyst or a tumor. We’ve gotta cut it out regardless.

So that’s happening at some point soon. I have to talk to my plastic surgeon next week.

We discussed my exchange surgery that is scheduled for September. He said we have to wait and see where we are at that point. I think I’ve decided to just cancel it. I am pretty sure I only have two to three years left, and I don’t want to waste any of my time recovering from unnecessary surgery. D and I are happy with the current tits. I won’t be alive long enough for these recalled ones to kill me – so why bother?

My tumor markers are way up. He told me today that this result would be the determining factor in whether I continue this treatment. Those results come in last, so I didn’t get them until several hours after the appointment. I emailed him and just said, “Where do we go from here?” I imagine I’ll be getting a phone call on Monday.

It’s weird – I’m not that upset. I’ve accepted it. My fate is to die from breast cancer. I’m mostly worried about my husband. He’s a heartbroken mess.

I’m not completely satisfied with the care I’m receiving. I’m going to make some calls on Monday. I want a second opinion. I know this will kill me, but I want as much time as I can get. My oncologist is a nice guy, but today was kind of a hot mess. I worry he has too many patients to really treat me properly.

I’m a bougie bitch – I can afford better care than this. I’m thankful for that; believe me.

I’m going to cash out my 401k. We’ve (D and I) debated this a lot, and he’s been telling me to wait, but tonight, in tears, he said: I think you should go ahead and cash it out.

I want to finish the basement. And take the kids to Hawaii. And buy whatever random shit that makes me happy.

I’m starting to think about what to do with the firm. I’m not ready to throw in the towel yet, but if I can’t find a treatment that keeps me stable by the end of the year, I’m going to give up my practice.

And that’s where we are.

It’s…hard. Really, really hard.

Thank you for reading.

Even if I don’t know you, I love you for caring.

xoxo