So I’m angry…and is that okay?

You know fucking what? I can wax philosophical about my change, I can dream about a different era, and I can (try to be) be a different person. But I will never lose my anger.

I won’t drop it until I’ve confronted it.

And I’m angry.

Ask anyone who’s met me. Look at my entitlement, look at my self-loathing, look at my derision. I’m an angry-ass bitch.

Though, who could really fault me- after growing up in such a hate-filled household? After having to hide the food I ate? The clothes I wore? The belt marks on my back? The loss of my childhood that I felt so clearly in 1998 (for starters)? I grew up in a pretty literal hellscape- one that ultimately led me to drag a mother out of it. But it took begging and pleading. And it took life-threatening actions.

So yeah. I’m an angry person. I have a lot of resentments. I take a lot of things personally.

I try not to do this anymore, because I understand that the things I take personally are a direct result of my fear of acceptance. I didn’t get that acceptance growing up. No one told me that I was ‘good enough, smart enough, and doggone it people liked me’. That was never a thing. I was always better than someone (because I could swim or run faster), or I was a piece of shit (because I couldn’t swim/run faster). I wasn’t smart enough. I didn’t memorize this monologue quickly enough. I didn’t do what you wanted me to do well enough.

I was not enough.

And now I have to be enough for myself.

And that’s really fucking confusing.

I think most people learn this as they’re growing up. They are part of a “normal” family; one that fosters growth, independence, and acceptance. Most people turn out okay. But not my family. And I shouldn’t harp on this, but it is a part of who I am and it will never go away. I will always flinch when someone moves quickly around me. Always.

So I’m angry about that. And after doing my inventory, I’m angry about the way that the treatment has affected me as an adult. So now I’m angry at a few people. It’s fostered selfishness in me. It’s made me lie. It’s made me afraid to be myself. I’ve let that shit make me terrified of who I might actually be, and that’s the saddest thing…thinking about who I could be.

March 25th (or thereabouts)- I was diagnosed with cancer. I chose to forego reconstruction. I opted in for drugs that destroyed my body. I let people inject me with  serums that put me into early menopause…before I was 30. I cried and writhed around in pain, I hurt people, I hurt myself, I lost my relationship. I voluntarily let people shoot me with lasers…

And I’m angry about this. So angry. I am angry about the fact that this happened to me. I am angry about the fact that my partner found it after five years of false alarms. I am angry that someone said they would be jealous of me having no tits. I am angry that someone said ‘cancer is a fun adventure’. I am angry that I lost a part of my body that people equate to attractiveness. I am angry that I will never look like an “ideal woman”. I am angry that I have lost all of my hair. I am angry that I look the way that I do. I am angry that I still have to drive to Fridley for radiation every morning and that I am always 30 minutes early because I’m an insane person who has no concept of time. I’m just so angry. About everything.

But living with anger is so time-consuming and, frankly, painful. I know that I can’t make this go away over-night, and I know that it might still rear its ugly head no matter what sort of serenity I might obtain. I know that I have said ‘if not me, then who’. I agree with that. I do know that I can only affect change where I am able- and this seems to be only in myself and the air in my tires. I can’t do anything more, and trying to do so is futile and (probably) harmful. It’s my body, and I should own it and love it. I don’t know how to deal with all these feelings, but I can take comfort in the fact that I don’t have to do it alone.

 


A special thank you to those that have been there: I know I am irrational and insane, but I appreciate you for sticking with me. Who would we be if we didn’t have our friends?

Some Feels

Let’s talk briefly about this shocking phenomenon I experienced yesterday.

Not only did I feel a feeling, but I was able to identify it! Yes, I realize this probably sounds like such a small accomplishment and you’re probably rolling your eyes like holy shit it took her 30 years to get in touch with her emotions, but this is a big deal for me. The simple act of being able to put a name to what I’m feeling is a huge accomplishment for a person who has routinely stuffed their emotions so deeply down into the dank, dark recesses of their cold, dead heart.

And what I felt was pride, in myself and in what I was doing.

Let me explain. I recently moved in an apartment of my own. I haven’t lived alone since I worked in Korea (2010), so this is a relatively new experience for me. It’s been marginally terrifying in the sense that there is no warm body next to me at night , but it’s also been fairly liberating. I’ve made a lot of changes in my schedule, picked up some new hobbies, and am, in general, doing quite well.

Yesterday, when I returned home from work, I walked my dog, made dinner and pre-made my lunch for the next day, did my laundry, and was ready to go to a meeting by 6 pm. And I have no idea why this made me feel as accomplished as it did; perhaps it’s because I’ve been relying on other people to help me with those things, and I now physically feel like I have the capacity to do them for myself. Is that a self-care thing? I don’t really know. But I felt proud of myself, and I can’t tell you the last time that has happened. I know, it seems trivial.

2017 really was not my year – divorced, house sold, cancer, surgeries, more surgeries, job moves, break-ups, etc. Up until about a week ago, I was so focused on the resentment that I held for all of these things (oh gods woe is me why is this happening to meeee). True, that list sucks a lot of balls, but I see now that all of it is what I make of it. I can choose to dwell on how “shitty” 2017 has been, or I can focus on changing myself to better handle those situations when they arise. Instead of perseverating on the “why mes?”, I can ask “why not me?” (this shit is going to happen to someone, after all) and then figure out how best to deal with it.

ANYWAY.

This has been your gross personal revelation for the day. I guess feelings can be okay.


**Cancer Update**

I finished chemotherapy last Friday! It is such a relief to have my Fridays free of poison. I am still deciding on whether or not I should/can do radiation, as it’s a huge time commitment and is physically exhausting. Everyone and their mother has an opinion on this, and I could probably write a lengthy post about how well-received opinions about my body are, but I’m trying to remember that they’re only coming from a place of love.

I do appreciate that people love me and want me to be around for a long time. Contrary to popular belief, I want that as well.

U-P-D-A-T-E

Hi, friends.

I keep hearing that it’s been awhile since I wrote anything. Is that true? Has it been awhile? I’m sorry.

I think when we last spoke, I was deep in the throes of my final round of Adriamycin/Cytoxan, which is to say that I was being ripped end to end by some poison that I pay professionals to infuse into my bloodstream. The drug made me constantly tired and really ill, but I lost 12 pounds and reached my goal weight (thanks, chemo!), so it wasn’t all garbage! It felt a bit like a “milestone” or something to “celebrate” when I finished those four treatments, and I was almost excited to move on to Taxol- the once weekly drug that my oncologist built up as ‘not that bad‘.

I’m now six rounds of Taxol deep, with another six to complete, and I’m feeling pretty good. By pretty good, I mean I’m not vomiting, I don’t experience nausea, I don’t have to be left alone in a dark room for days on end (a piece of me enjoyed that part), and I’m no longer addicted to potatoes. Soup is not the only thing I can eat! I don’t have to endure Neulasta, which boosts your white blood cell count, but makes you feel like even a sneeze in your general direction is the most painful thing that’s ever happened to you. And I no longer rely on my 29-going-on-78 pill-box to get me through the day which is a real breath of fresh air- if that fresh air is still polluted, but only slightly less so.

The reality is that Taxol has actually not been that bad. Sure, my fingernails look like I’ve been living in a sewer and surviving off the garbage that rats don’t find fit to eat, but I’ll take it. And sure, my eyebrows finally fell out, but that just seemed to add to my sexy alien appearance. I even got cat-called as I walked into the cancer center last week! #blessed (Men are pigs.) But at its worst, Taxol has given me a wicked case of acid reflux and has run me into the ground, physically and emotionally. I didn’t know I could feel so exhausted at 6:30 AM when my alarm is going off…but again, it could be worse! I could have a shitty brain that doesn’t cooperate and intentionally mangles words and phrases, just to really goad the English major in me.

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Actual photo of my brain.

But, I suppose I should be honest and say that my writing has been slacking because I’ve been out enjoying life- something I never thought I’d take pride in typing. There’s been much less time spent dwelling on things recently, and while I think that part of that has to do with the “bitch, you got cancer live ur lyfe” attitude, I also think that I might just be happy.

SHOCK.

HORROR.

I know, I know. I didn’t expect it, either! What sort of demonic entity could drag me away from the safe haven of the Internet that I so dearly love? Could it be that I am just now understanding the concept of immediacy and participation? Because here I am, looking forward to getting up, looking forward to doing things with people, and looking forward to living this crazy life with my chosen humans. Naturally, there are still a ton of things to bitch about, but why do that when I can wake up to Justin and Mini-J: two people as thrilled to be going to the state fair as they are about Halloween? Who would have ever thought I would look forward to something like that? But here we are.

Don’t get me wrong, the irony of a death-invested person just coming to this conclusion is not lost on me. I know I have a lot of work to do once this time in my life is past (and if it passes without my passing??!!). My goal of becoming a mortician and assisting people in their end-of-life care is still very much alive and, as a I wrestle with my own mortality, is much more meaningful. I’ll get there; just not within the timeline that I had originally anticipated. Such is life, no? In the meantime, I’m staving off that pre-30’s meltdown (what’s 30 when you look like you’re 20 but feel like you’re 60?) and growing my hair out.

 

A special thank-you to everyone who sent me kind emails and bath bombs. You’re the bomb. Literally.

What they don’t tell you about having cancer.

Regardless of what disease you’ve just been diagnosed with, you’ve probably been given a metric fuckton of information about it. You’ve probably been scheduled to see multiple providers without regard to your actual time constraints. You’ve probably been told a whole host of things about stuff n’ things (facts, statistics, data, opinions, culturally ingrained bullshit opinions), and you are likely now in information/sensory overload with the immediate threat of stroking out looming over you. The point is that people throw information at you like a wasted frat boy throws darts at a wall.

My preferred method for dealing with provider appointments is to show up, look attentive and, at the first mention of something depressing, stop listening. Thank the gods for people like Justin and my mother who have sat through those appointments with me and listened to the information when I could not. If it weren’t for them, I wouldn’t be an active participant in my own treatment. Listen, when you start talking about freezing eggs and the millions of dollars it costs, expect to get traded in for the finer parts of my brain, such as Do You Think I Made the Right Decision at Breakfast? and Imagine What Would Have Happened If I had Done XYZ Seven Years Ago.

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But between shoving pink accouterments in your face and telling you that you should probably consider letting a plastic surgeon make bank off your acute despair, people forget to tell you important things, like how your life might change, or how you might want to consider mental health support immediately. Granted, I can only speak to this from the lens of breast cancer, but I have an inkling that it’s a feeling shared by many people who find their lives upturned overnight by the phrase “I’m sorry, but it’s….”.

So here’s a very incomplete and rambling list of things I’ve learned about living with a disease (that no one else mentioned).

  1. You may think you are strong and can see things through to the end without the thin veneer of bravery shattering into a thousand different pieces, but you are probably wrong. And that is okay.
  2. Your friends are going to turn it the fuck out. Their awesomeness has always been known, but it will be amplified by the threat of non-existence, and you will want to hug them that much harder when you see them. Don’t break their neck.
  3. Not all of your friends will want to stay your friends. This isn’t exactly specific to a post-whatever diagnosis, but if it happens while you’re in treatment, it’s going to sting like nothing you could imagine. George RR Martin couldn’t craft a better betrayal.
  4. You’re going to contemplate your mortality in ways you didn’t think possible. What would life be without the tangy bite of a good Gorgonzola?
  5. Decisions you were convinced were the right ones to make will vacillate between “greatest idea ever I love it so me” to “jesus christ what have I done this is all wrong” in a matter of minutes. In my case, once I’ve seen a nice pair of breasts on a Netflix show.
  6. You’re going to spend a lot of time wondering why your partner is with you when they could be with someone else who doesn’t share a temporary zip code with the cancer center. And who has hair. And who is in control of their life. And shits on a regular schedule. And who probably knows how to do winged eyeliner or some other magical craft.
  7. Your partner is going to surprise you with their kindness and understanding, and you will chastise yourself for pondering item 6.
  8. Potatoes are Satan’s gift to the world. Potato soup, mashed potatoes, lightly fried potatoes, raw potatoes, Mr. Potato Head. All amazing.
  9. You will have dreams of a day when you could brush your teeth without your gums bleeding, take a poop without bleeding, breathe…without bleeding. But then you’ll wake up.
  10. You’ll probably feel crazy and second-guess everything you think and do. It’s a real Gollum/Smeagol situation, if I’m honest. This is where it would have been helpful to have that mental health support in place.
  11. Lush bath bombs are made by kitten angels and sent to earth for your enjoyment and relaxation.
  12. BATHS. ARE. GREAT.
  13. Trying to take care of everything like you used to is a real stupid idea. Actually, this one they kind of hint at (plus, it helps to have family members who echo this sentiment), but you don’t listen because you’re so strong and can handle it.
  14. Glitter can, in fact, make things more tolerable.
  15. You will break. You will have moments of wishing that you didn’t have to see this through. End of that thought.
  16. BUT! You will get through it because, even if you don’t believe in yourself, hundreds of other people do. And you show up for the people you love, because they’re worth it.
  17. And maybe so are you.

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Edit: I forgot one! No one mentioned that the chemically-induced menopause was going to make me cry all the time. It’s onions. ONIONS.

In which we discuss feelings, doormats, and ways to be kind.

I’m going to state, note: not apologize, that this post is fueled by a lot of emotions and anxiety. If you have a problem with something, you know where the red x is.

These last few months have been pretty stressful. And when I say ‘stressful’, I mean fucking insane, ridiculous, demanding, brutal, unkind, etc. It’s been a real sidewinder of shit, but in a way, I’m grateful for it. Cancer has forced me to slow down and examine my life in a way I probably wouldn’t have been capable of otherwise. It has shown me incredible kindnesses through my community of friends and family, and given me a chance to connect with people I might not have before. It has forced me to work on my relationship with my partner, as well as my friends, and really value them for what they bring to my life. So for that, I am grateful. And because of that, I’m doing some self-work, y’all!

Please allow me to be the first person to acknowledge that I have a tendency to be a doormat. I am the type of person who goes out of my way to accommodate people who I consider worth it and, often, people who continually prove they don’t deserve it. I do it because I was raised to treat most humans with respect and kindness, and I stick to that as a general rule. Sure, I set some boundaries, but it takes a lot of abuse and pushing to get me there.

Even my work knows my questionable personality traits!

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Sometimes, I think being a caregiver and being a doormat coincide. My ultimate desire is that everyone be happy and cared for and this often comes at price- to myself and my needs, to my partner and his needs, to my family and their needs. Again, I know that this has played a part in the end of some of my relationships, but it’s hard to break the cycle when it’s something you’ve been doing for so long. It’s hard to say ‘no’ to people when you only want to say yes, because helping people out is a fulfilling feeling. But it’s difficult to set appropriate boundaries with people when you’re used to bending over backwards to please them. And it’s quite difficult to understand why people would not afford you the same kindness.

The clear unwillingness to not be kind to someone, even if you don’t “understand them”, is baffling to me. And no, I don’t mean #peaceloveandhappiness #truth #powerofpositivity Instagram bullshit kindness that isn’t followed up with an action. I mean put your biases aside, slide into your human suit, and offer people the same treatment that they have extended to you. It’s not hard! I do it all the time, and I do it because I believe that people deserve respect, until they demonstrate to you that they don’t. And, as I stated before, I have previously CONTINUED to show them kindness, well after they’ve shown me their true colors.

I guess I believe that, even if we don’t necessarily see eye to eye on something, or we don’t get along for whatever reason, that you are still deserving of respect as a person and I am willing to help you. I believe that people can coexist in this world peacefully even if they don’t like each other. For example, you might have voted for someone whose policies I don’t agree with, but I’m not going to treat you poorly because of that choice. Someone might engage in activities that I would not choose to partake in, but that doesn’t mean I’m going to think less of them for it. The world isn’t black and white like that, at least for me.

Recently, I started going to therapy. I think the cancer has pushed me to the point of serious self-evaluation; a place where I need to decide what/who is important to me and put in serious work to realize my life goals and dreams. So, through all this work, I have come to conclusion that it is time to start enforcing boundaries. Saying ‘no’ is going to be big area of growth, as well as learning how to divide my time appropriately. I want to  learn how to accurately express my feelings, even if it feels uncomfortable and weird, and then learn how to stand firm in them when they are inevitably challenged.

So a shout out to all those people who have abused my kindness. The deliberate avoidance of eye contact when I’ve gone out of my way to do something for you or your family member? Bye. The honest well-wishes to you and your family members in their times of need, when you’ve referred to my illness as a “FUN ADVENTURE” (yes, this really happened). Bye. Tolerating snide remarks because I’m too nice (doormat)to call you out in public? Bye. Expressing my feelings in what I assume is a safe space, only to have them used against me in the workplace? Bye. Holding all of this in and letting it fester is just hurting my chances of healing. So blessed be the fruit, fuckers. It’s a new Elspeth.

BUT!

I would also like to sincerely thank everyone who has stuck with me through this last year and a half. The people who have turned out to show their support and love have floored me. The people who continue to read this word salad and send me thoughtful messages- it means more to me than you know. I know I’ve said it before, but I never thought that I would, or could, make a difference to someone just by writing. Thank you for being there for me, for being part of my community, and for being the amazing people you are. My sock drawer thanks you, as well. I value you, I appreciate you, and I love you! I have no idea how to ever repay the kindness, but I will do my best.


PS: If this seems disjointed, or not like my regular writing, I apologize. I am apparently suffering from “chemo brain”, which is a real thing verified by my oncologist (!!!), and it has really been taking a toll on the way I express myself, as well as my memory. Bear with me, as all I can do is continue to push through it. October can’t come soon enough. 

Cheese, BRCA 1 & 2, and #healthiswealth.

If I had a dollar for every time someone said to me “oh, so you’re doing the Angelina Jolie thing?”, I would have ten dollars. Maybe. And sure, in the sense that we both had bilateral mastectomies, they would be right. But there is quite a difference between Tomb Raider and I- she carries a BRCA 1 mutation and I don’t. Because she has a gene mutation, she was told that she had about an 87% chance of developing breast cancer. Mrs. Smith opted to pursue something call a prophylactic mastectomy (sometimes referred to as a preventative mastectomy), which seems to have been a wonderful option. She also opted for reconstruction, but I don’t have time to blather about that.

When I was diagnosed, a myriad of appointments were scheduled for me, and speaking to a genetic counselor was one of the first things I did. After watching my mom survive breast cancer, and then watching my grandmother do it eleven years later, I figured I should probably get some testing done. When I brought it up to my GP, she stated that I could do it but that I “was young and it was expensive”. Both are true, of course. My mother had just done her own testing, only for BRCA 1 & 2, which both came back clean (sans mutation), and my grandmother was old enough that testing wasn’t really seen as a helpful option.

So my genetic counselor and I mapped out my family (to the best of our ability because I don’t know shit about my bio-dad’s family) and opted to test the eight major genes that are considered high risk for cancer development. I figured that shit would come back with mutations across the board because…duh…it’s me. The test results took forever to be analyzed and it took me even longer to get in for the results, so in that time I had already had my surgery, had my drains removed (for the first time), etc. Justin and I both went into the appointment with trepidation, both of us assuming that things were going to be terrible- we wouldn’t be able to have children because I would just pass on a bunch of shitty shit to them…

Lo, and behold!

Not a single mutation. Nothing that explained why my body wanted to murder me slowly. The mix of disbelief and surprise was fleeting when reminded of the actual statistics of breast cancer. So I am not genetically mutated, but I still have cancer. And my mom isn’t genetically mutated, but she still had cancer. Granted, these tests aren’t 100% guaranteed, but come on, science and shit- they’re right. We must just be those fluke humans that develop cancer due to stress. I think that’s why it’s important to tell my story. So many people (read: women) have said to me “but you’re so young and healthy!”. First off- thank you. I am young and I am healthy. And then they follow that up with “I should get checked out”, to which I reply emphatically “YES, YOU SHOULD!”.

Here’s the thing: I AM young and I AM healthy. Sure, I smoked for five years. Yes, I ate meat. Yes, I did drugs. Yes, I engaged in risky behaviors because that’s just the natural course of life for a lot of young women in America. But I am a vegetarian, I engage in regular physical activity, and I live my life as exuberantly and as safely as I can. That “but you’re so healthy” is a real double-edged sword for me. I often feel like women are subconsciously judged for their life choices when they’re diagnosed. I certainly have felt that. But I also get the sense of disbelief that this could happen to a young woman. So really, dial it back, world. For those of us who don’t have a gene mutation, there is no cause and there is no cure.

Sure, sure. I could go vegan. I could go sugar-free. I could do a lot of things that I’m not doing to help/prevent/kill my joy. The beloved and I have talked about going sugar-free, but it sounds like a lot of work and we’re already incredibly stressed and anxious as it is. My mother reminds me about giving up dairy products because of my diagnosis. There is estrogen in cheese, she says. I will lower my risk of recurrence, she says. But you will pry this Brie from my cold, dead hands!

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This brings me to the #healthiswealth portion of my rant. Guess what? No, it fucking isn’t. It doesn’t matter how many kale and avocado shakes you make, your chances of getting cancer are still the same. You can buy one of those horrid Juicero things and squeeze your sustenance out of a plastic garbage bag for $400 a day and still get cancer. Bad things happen to good people, good things happen to bad people, diseases happen to young people, and evil people live forever. My point is enjoy life responsibly, be aware of your body, and do your research.

Women don’t do anything to deserve breast cancer, but it happens.

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Update time!

My drains were removed on Monday due to them trying to physically escape from my chest cavity. Who knew that my body wouldn’t love foreign objects sewn into it?! This means that I am now cleared for all of the prerequisites for chemotherapy, and my port placement surgery is scheduled for this coming week. Chemo commences on June 1st and I will have more updates on that treatment soon. It’s a bit to digest at the moment, but isn’t all of life?

No longer floating in the stratosphere of stupid (and other updates).

Remember all that chest bleeding that was going on last time we spoke?

Well.

It didn’t go away. In fact, it got worse. I had to see my surgeon again to have him drain it, which meant being juiced while having my left drain removed simultaneously. Neither one felt particularly pleasant, in case you were wondering. We all hoped that, with the compression of an ace bandage and pressure to the area, the bleeding would stop and the chest flap would adhere to my muscle. In typical Elspeth fashion, this did not happen, and my surgeon scheduled a “right mastectomy exploration” surgery. Exploring, what fun!

On Tuesday morning, I went in for surgery and came out with no explanation for the bleeding, plus two new drains. As disheartening as it is, I am hopeful that the extra drain time will help me heal enough so that I may get on with treatment. In the meantime, I’m collecting photos of the nasty (beautiful) things my body produces so that, at some point in the future, I can create a photo collage and make my big break as a modern artist. El oh el.

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Why, yes, those are Larry David leggings! I wore them to the hospital for good luck. All of my nurses loved them, even though most of them thought they were Bernie Sanders. Speaking of nurses- it is Nurse Appreciation Week! Have you profusely thanked all of the nurses in your life? If not, please take the time to do so. I have been incredibly blessed by the excellent care that the nurses of Methodist Hospital have provided for me in the last two months. Without them, I would still be peeing purple and trying to use WebMD to cure my blood balloon boob.

All of this does put off starting the chemotherapy process, though. I need to heal and have these two saddlebags removed before I can have my port placed. It also means that I am doing well enough to start back at work, which I was less than thrilled about. I’ve really enjoyed having time to write, spend time with Justin and my mom, and focus on getting better, as opposed to stressing the fuck out over whether or not we should be purchasing cups for the med office. If I had it my way, truly my way, we would pack up and move out to LA where we could play in the sun all day and I could make my break into the green burial scene. Home viewings! Natural burial! New age death positivity! Woo! I’d even settle to stay in MN and work from home as a tortured writer figure… But since that isn’t happening, I’m back to an 8-4 routine. At least I have good health insurance and some wonderful coworkers!

The last update I have for now is a very exciting one (at least to me)! If you’ve known me at any point during the last year and a half, you know that I’ve been desperately trying to get divorced from an anthropomorphic chicken nugget, and that it hasn’t been going well. But no longer! The final nail has been hammered into the coffin and I’ll be free sometime in June or early July. Hallelujah, hallelujah, thank the dark lords! For months, my attorney had been proposing fair and equitable settlements to him and his counsel, and they kept refusing them, all the while making terrible comments about me and throwing around unfounded accusations. It all came to a head when we had to sit down for a third party-mediated FENE, which is basically financial uncoupling. I won’t go into details, but I will say that I held my ground and walked away satisfied with the outcome. Sometimes things do go my way.

#blessed