Raw

Beyonce stole my idea, except she named her experience after a sour drink. My story of relationship turmoil coming full circle was going to be called Prunes because they produce A LOT of shit.

This must be said before you read any farther. This entry is not intended to paint Darin in any sort of negative light. To know him is to love him. He is quiet yet loud, shy yet bold, inappropriate, dry, loving, neglectful, humorous, mysterious, stubborn, spiteful, intelligent, judgmental, thoughtful and innocent all wrapped up in a cute ball that keeps getting more and more handsome with age...and sort of more of a pain in the ass. Looking back, I truly believe that Darin coped with our situation the best way he knew how, to ignore it. I don't think he ever intended to add insult to injury and I understand his personality well enough to know that he means well but, man, he can do some damage when he ignores things. He has given his permission for me to write this entry because it captures what cancer has done to us and to our marriage. It is an honest and raw depiction of the consequences of shutting down, tuning out, when the trying stops, when the walls go up and when hearts get broken.


Please listen to this first because it paints a very real picture of our experience through song.
https://www.youtube.com/watch?v=tlCkafSYNJI


Relationships can hold the most rewarding experiences and pull you to the most ultimate low at certain points. It's amazing how we can love someone so much yet treat them so poorly at the same time, all because we hold ourselves back for various reasons and in turn neglect those that we love the most. That neglect can isolate, run down, hurt and sometimes cause relationships to never recover. Cancer came for me and when I kicked it's ass it came after my marriage, and nearly won.

Shortly after I was diagnosed with cancer Darin left me.  He was here in the physical sense, I could see him, but that was the only indication that he was present in my life. He shut down, we stopped speaking unless it was absolutely necessary and pretty soon we were just shadows of two people occupying a space and taking care of a child. I would sit and watch Darin's every move when he was home to get some sort of confirmation that he cared about me, and all it would do was make me angry because I was hurt beyond belief. Dark thoughts began to engulf me and fear set in that in Darin's mind I had already died and he had already moved on.  The worst of it was, I had to watch it all go down right in front of me because I was still alive in spite of being treated like I already had passed. Remember, this was during a time where we had no answers and my fate was sitting behind a door on a game show waiting to be revealed. All I wanted him to say (unprompted) was that he was scared and that he didn't want to lose me. I knew he felt it, but I shouldn't have to ask for those words and shouldn't just assume that is how my husband feels about me. Those words that I wanted never happened and I held most of my anger in, but at times it would spew out over something completely illegitimate like folded laundry not being put away. Initially, I knew Darin was scared and as things turned I gave him the benefit of the doubt but as time progressed and things got worse we fell down a rabbit hole and couldn't get out. When we got the confirmation that the cancer hadn't spread there was a quick celebration in the dr.'s office and he and I never discussed it again. My mom, my sister, my friends, every one else was so relieved, happy and excited and Darin's demeanor never changed. Simona was born and I had it built up in my mind that it would make Darin and I reconnect and when that didn't happen I felt sick. After her delivery I had thought that maybe he'd get me a little sentimental gift or something to say, "we made it" and when when all I got was Darin not wanting to take a family photo, I felt my heart break. I mentioned in the last post about the aftermath and really what I was getting at was all of "this," the overflow, the seepage...marriages are hard, marriages with Marco are really hard, marriages with two little kids contribute to one of the highest divorce rates and adding a cancer diagnosis to the mix, well you might as well pack up your shit and go your separate ways. For months we occupied space and had nothing to do with each other. I sat and waited for Darin to come back. I'd sit and listen to the clock and wait. I'd stare out the window like a dog waiting for her owner to come home. I'd think, I'd fester, I'd get pissed, I'd start to feel pathetic that I just wanted some form of attention when I've always been independent and with every passing day that he'd come home from work and nothing was discussed I'd slip deeper and deeper into the disappointment that was my relationship. We started to have fights that turned ugly in a matter of seconds, all stemming from the neglect in our relationship. Marco would be present and I'd cry when he'd hide behind one of our legs when the yelling started. I never wanted that for him and felt like a failure. We couldn't catch a break in our lives or our relationship and things were going downhill fast. I felt unloved, unsupported, unwanted and tossed aside. I know Darin never intended for me to feel that way. But those were the consequences of him burying his head in the sand. When people would ask how Darin was doing, I'd lie and say he was dealing with things fine and we were good. If I even tried to approach the truth, I'm positive someone would have needed to peel me up off the floor. There is a scene in Finding Nemo where Marlon and Dory are stuck inside the whale and Marlon escalates and begins to slam his body into the whale's teeth out of frustration and in the purest form of desperation and exhaustion lets himself drop to the bottom of the whale's mouth and lets out this noise of defeat because he just wants his son back. That part always brings tears to my eyes. I felt like I was stuck in that moment for months that seemed like years, anytime anyone asked how I was doing. First it was cancer, then it progressed to my marriage falling apart. I was left baffled on how quickly our life took a turn and in those moments I wasn't as strong as people thought, I wasn't as positive as everyone said, I cried every time I got in the shower. I wrote letters to Darin because talking in person wasn't going to happen. My eyes would cloud up so quickly with tears that my throat would burn and I'd have to wait to regain clear vision to keep typing. My letters were mean, open, honest, raw and full of passion all at the same time. He'd respond and things would get better for a day or two, then we'd slip back down again. We both decided it was time to go see a therapist, to help "me" cope with the cancer and to help pull our marriage out of the danger zone. There were tears, there was yelling (guess who did all of that?) and little by little our therapist helped us see our destructive patterns. I laid everything on the line and tried to drive the point home that there could be no lower of a point in a relationship than knowing that you could die and your spouse would move on without skipping a beat and there would be no mourning, no tears, no sadness and no remembrance. Maybe it's selfish but I needed to know that all the sacrifices, blood, sweat and tears that we as women pour into our marriages and keeping our family's happy means something huge, and in the end, the thought that with the drop of a hat we are forgotten and most likely replaced with someone else to pick up where we left off is gut wrenching. I felt foolish that my sacrifices meant nothing and that everything that I have poured myself into to create a happy life with my husband was all a big joke. Marco and Simona wouldn't remember me, they'll only have pictures so I couldn't be upset with them. Darin knows me better than anyone on this planet, I have fully given him my heart and dedicated my life to improving his and this is how I am honored? Neglected, left alone, forgotten about. That is why the song I had you listened to hit me so hard. That is why someone wrote it, they felt that pain and that experience. Our therapist was neutral and tried to help us both deal with the trauma from the cancer and tried to help us heal the pain that we had inflicted on each other. We both looked forward to our upcoming trip to Mexico to reconnect and to catch our breath.

The first half of our trip was an absolute fucking nightmare.  Marco was so excited and had exceeded lab puppy on steroids status, the house was not child friendly with an exposed balcony and my anxiety went through the roof as I envision Marco flying off onto the concrete below. It made me edgy and when Darin dismissed my feelings, it put me back into that nasty place. We saw great friends and that relieved the tension between Darin and me temporarily. We were sleep deprived from going all day with Marco, our parenting styles clashed even more, I was worried our good friends staying with us were regretting their vacation, Darin and I would start bickering over the dumbest of things, I was in chronic pain with my knee (more to come on that gem of an experience later), I got the flu the third day we were there and with each hour, the tension seemed to get worse, then lighten, then become more intense. And it was in that sweet, quaint, romantic lazy beach town on a cobblestone hill in a hot driveway on our fourth day that the floodgates opened and the dam finally broke. Months of strain wore us down and after a verbal explosion that could compete with the best of them, we stood there staring at each other almost as if we had guns drawn and I said the words that I have never wanted to say to anyone again, "I can't keep doing this, I think we should get a divorce." Marco stood there looking at me with his big eyes and kept asking, "Why is Dad in trouble?" I wanted to vomit. I wanted to run away. I wanted to go jump in the ocean and let the consequences be. I remembering thinking me dying would've been easier. Darin said to Marco, "Because Dad is making bad choices." In that moment was the first time Darin had said to me without prompting or pushing that he held a part in our relationship crumbling.

I don't remember what happened after that, truly I don't. Darin got the flu the next day so I would take the kids by myself or with our friends and I just vacationed...I drank beer at lunch, I played with Marco on the beach, I layed with Simona in the sand.  When Darin and I did speak again, I don't remember the conversations we had because they were all surface level. What do you want for lunch? Where should be take the kids? Do you have a bottle for Simona? It was too much to go back and revisit those words of divorce, so we didn't.  I had nothing left to say, so maybe that's why things had gotten better, because I had hit the absolute rock bottom. I can't speak for Darin, so I have no clue how he felt or what he thought, and truly it doesn't matter because he'd never open up and tell me anyway. He is the ultimate poker player and being married to him is like playing in an endless poker tournament. But as hard as it gets I love him. As much as I want to back over him with my car, I just can't. There are days that I want to run so far away from him in the opposite direction that it's stunning. As time has passed I have started to heal, I'm getting over certain hurdles I didn't think I could before. My kids' pediatrician has said, "There is beauty in struggle" and I do agree, but that doesn't mean that it doesn't suck.

Oprah, if you're out there beach house hunting for me, can I please have one with a little casita in the back? We'll put Darin out there...

First wave

This is the farmacia where I broke down and bought Xanax. 

Follow the cobblestone road...

Drinking was mandatory for survival. 

Our buffers. Thankful for them!

Baseball in the beach.

Hit the bottle too hard.

Beach girl

Rhonda and me. Wedding festivities!

Rhonda and Darin. More wedding! 

The Aftermath

This is the blog that for many reasons cannot be written. Every time I have sat down to think about starting it, something happens. I go to turn my laptop on and it's dead. No writing. I finally plug my laptop in and Marco starts screaming that he has to poop. I come back to write and Simona starts to cry because she's hungry. I come back to write again and it's dinner time. I try again at bed time but instead plan an evil plot against Darin, as he falls asleep so easily every night and always ends it with saying how tired he is. I go to hand write thoughts in a journal, I can't find a working pen. Don't you hate that? It's such a tease. Why the hell do I have so many pens and none of them work? It's pure laziness because I scribble lightly on paper trying to get it to work, then as no ink comes out, I scribble harder and harder until it almost flings out of my hand, then to make it worse, I put the god damn pen back into the pen jar instead of walking seven steps to the garbage can, pick out another pen and repeat the process. Pretty soon I have a jar with no working pens and pencils who's lead are actually below the wooden encasing making it look like an uncircumcised penis. What I am trying to say, is, that for some reason this blog entry does not want to be created. This has made me wonder if I there is something to be said for that? Maybe I'm done? Maybe there is no more story to tell?  I mean, I'm alive, on the path to becoming healthy. Then it hits me. THE AFTERMATH. I met a wonderful person at the Race for the Cure, who had also been diagnosed young and she shared with me that she kicked ass through diagnosis and treatment, then after her supports started to fade was when she crashed. The aftermath, the timeline being different for each person, of this whole situation has been seeping through the cracks of my every day life and I didn't really notice it until it right after Simona was born and it was time to breastfeed.

In the hospital you are kept on a strict two hour feeding schedule. It's all colostrum at first before breast milk comes in, but still babies are put on the breast every two hours to feed unless the situation calls for formula. And I can tell you, I wanted that formula bad. At first, getting Simona to latch on was no problem for her, but painful as hell for me, as it was for Marco. The first couple of times we did great and I felt like I could overcome it and work through the pain and pretty soon, after about ten hours or so I was dreading feeding time. When my alarm would go off on my phone, I would catch myself using the bathroom, pacing around the room, straightening things up, changing her, rocking her, doing basically everything but feeding her. The more "other activities" I was doing the more the anxiety about feeding her, or lack thereof, would build up until the point I would just say, "screw it" and bite the bullet. I'd latch her on, tears would stream down my face but I'd make myself do it because it was what was best for her. My whole body would tense up and for twenty minutes I'd basically be holding my breath, smiling through clenched teeth, trying to pretend that everything was great and natural. This went on for a while until I finally came to terms with the fact that I just couldn't do it. So, here's another lesson in "letting it go." I don't like to admit when I can't do something. Because we never will have confirmation on how my breast cancer came to be, I keep thinking back to how completely deteriorated my nipple was after I breast fed Marco and even though there was no evidence to support breast feeding having anything to do with the Paget's  I couldn't help but have those thoughts at the forefront of my mind each time I fed Simona. The aftermath. All those "what if's" starting racing through my mind.  What if there is undetected cancer on my left side and it becomes triggered from breast feeding? What if I get cancer again and I refuse to back down from breast feeding and too much time passes and it spreads all over and kills me? What if...Comparing all those thoughts then get counteracted by the clear teams divided on breast feeding vs. formula. If I can't get past my fears and use formula is that really going to hurt Simona's development? If I use formula do I really want to put up with the grocery clerk's judging eyes when she scans the can across the belt? Have we as a society really gotten ourselves this worked up over how we are feeding our babies?  WHAT ARE WE DOING? I read Facebook people, I see the posts and rants on breastfeeding in public (which, I could care less about, take your boob out and wave it around for all I care), how one study on one baby shows that "children" who are breastfed are able to  become bilingual at age three and that formula fed babies only know ten words. or how bottle fed babies are more likely to have a detachment disorder because apparently their mothers only touch them when they feed them with a bottle then put them back down until the next feeding time. All of these thoughts are zooming through my brain in a matter of minutes and I finally snap out of it. At what point am I going to say, "Look, our family has been through a lot and if breastfeeding is giving me anxiety and I can't work through it, then bottle feeding the baby is fine and I'll love her just the same." The more I thought about it, the sooner I started to convince myself that there was another solution. I started to sit up a little taller putting my plan together and pretty soon the Rocky theme song started to play and I became lost in my fantasy of how I was going to expose my plan to the world.  I was ready to write my mission statement on a post-it to give to the lactation specialist because I was too scared to tell her in person, but I was making progress! I was ready to storm down, well hobble down ( I just delivered a baby) to the main areas of the hospital picking people out who seemed to already not like that I was thinking about bottle feeding and telling them my plan on how I was going to feed my baby and to go to hell! I'm starting a revolution people!!! I'd show them. I'd also show everyone how quickly I would be getting my ass in a psychiatric hold. At least I was going down as a liberated, strong, one breasted bottle feeding woman (to everyone but the lactation specialist)!

What's funny is I decided to do something unconventional. Because everything leading up to the decision was totally normal. It hurt to pump, but not as bad as breastfeeding, so I opted to pump a very large number of times per day and I would bottle feed Simona. That way when my next breast was to be removed in April, there wouldn't be a problem transitioning to a bottle. Genius. So, that's what I did and the nurses thought I was crazy and lactation specialist thought I was crazy and I was happy, because apparently I am crazy. I would pump for 8 weeks until my next mammogram then supplement with formula. BAM. Now when I write this, I laugh because it's like, "Thumbs up Allison, for making a decision." But, man, in that moment I felt like I cracked some ancient code.

Things started great, but it was a little awkward having one hugely engorged breast and completely nothing on the other side. The skin would stretch and pull in the middle where my cleavage once was, which would get uncomfortable. Wearing a bra looked ridiculous but Pamela and Dolly did their best to even out the other side.  I was pumping eight times at the least per day and tried to get Simona to latch every now and again and it was the same story every time. The sweats would come on, I'd start pacing, then finally I would sit down with tears streaming down my face once she'd latch. It just wasn't going to work out. But it didn't mean that she and I didn't get a lot of time to bond. I'd hold her, cuddle her, rock her, stare at her while she slept and I loved to watch her take a bottle. I was on a strict pumping schedule, it started to suck and I realized that it was crazy to think I could keep up with this process with only one boob. Eight weeks wasn't long so I knew I could hang in there.

One morning I was actually able to take a shower because the stars must have aligned the night before. I was standing in the warm water getting cleaned up really well because showers are few and far between with two little kids. I was standing soaking up the warm water and that's when I felt it. I stood there frozen in the shower and just stared with my hand tucked in my armpit cupping the large lump I had just found. My throat began to burn, I got the chills and my eyes welled up with tears and I stood and cried. I kept thinking, "I can't go through this again, I can't go through this again, PLEASE, enough is enough, I can't do this again." I was shaking and not wanting to get out of the shower because that meant, I had to talk about the lump, I had to call someone about the lump, I had to find out what the lump was and go through the whole fucking process again. The lump was real and I needed to face it, even though it was the last thing I wanted to do. I do these task avoidance behaviors when I want to avoid something. When my portfolio was due for graduate school, out of the blue, I developed an obsession with fainting goats. I couldn't believe that I had made it 29 years and never heard of a fainting goat. I would watch hours of videos on Youtube in our makeshift office. Darin thought I was writing my paper but really I was watching goats tipping over. I mentally escape when something is looming over me, which is exactly what I did when I found that lump. I started to wonder how long a person could stay in the shower for? The water would get cold, but I could put a towel on, right? Or I could turn the water off and reorganize the shampoo bottles and start cleaning the tile while I waited for the water to get warm again? If I needed to use the bathroom, that wouldn't be a problem because there's a drain, let's just hope I only have to pee. The kids could still come in and see me like a zoo animal behind the glass. If I get hungry someone could bring me a sandwich or some cheese. That's stupid. I'd get my food wet, then I'd get cranky. Have you ever gotten a sandwich wet? It's gross and ruins the whole experience. Eventually common sense starts to sink in and I realize that it's time to get out and call the Dr.

I am scheduled to get an ultrasound a few days later. I screw the appointment time up somehow and show up an hour late. I was madder than hell at myself because I know the office squeezed me in and I know I will have to wait a few more days until I can get back in. Just as I was walking out the door, my friend Erin walks in and says, "Hi friend, are you ready?" I stood there looking at her thinking,      "Oh no, what I am supposed to be ready for? Shit! I forgot something else, Oh! Maybe we're going to lunch or something!" Then I see her scrubs and I, like the genius I am, put the pieces together that she works at the Breast Center, which I am standing in, which I after a few seconds I remember that she fills in there. As we're walking back I find out that she was at work waiting for me then her shift ended. She had already started to head home when the center called to tell her I had shown up, and like the angel she is, she turned around ( she does not live close to the center) and came all the way back to give me my ultrasound. I wanted to cry when she told me that because I hate screwing up someone's schedule, I hate to inconvenience others, I hate special treatment, yet I would've done the same thing for her. It's complicated, I guess, what we're able to do for others but for some reason don't feel like we deserve the same treatment. The ultrasound goes well, no tumor detected. I had an enlarged lymph node from after delivery. The Dr. came in to tell me to expect it to go down over the next few weeks, which was exactly what happened. I met with my surgeon the following week, everything checked out clear and we scheduled my mammogram for right before Christmas, which meant I would be need to stop breast feeding. In a way I was relieved because feeding was painful and Simona is a badass so I knew formula was going to be fine, plus I didn't feel the need anymore to start a revolution. You're welcome people in the waiting room of the medical center.

After that experience I became more cognizant of my reactions to certain situations. I have developed a heightened sense of fear. When I was standing in the shower feeling that lump and I was downright frightened. I was tense, couldn't focus and carried that edgy feeling with me until I could see a specialist. Rightfully so, it was perfectly acceptable for me to be scared to find a lump, but I have started to notice that this whole process has left me with a very strange reactionary tool box when faced with certain problems. I have always been sensitive and I have always been emotional to a degree, but I am either more comfortable showing those emotions now, or this experience has left me with a more cautious way to look at the world and I haven't figured out how I feel about that quite yet. As each day passed I began to develop this really lonely feeling. It wasn't postpartum, because I went through that with Marco, it was a different type of loneliness. I also started to get angry about things, and it wasn't just feeling mad, it was the "fly off the handle" angry. When I felt scared for one of the kids, I would explode. For example, if Simona's car seat didn't seem installed correctly, I would blow up. If I felt Darin was letting Marco get too reckless, I would completely lose it. When I felt I wasn't being heard or my concerns were being tossed to the side, I would explode. Having a background in mental health, I knew that something wasn't right with me, it wasn't so much my feeling, because being mad is fine, it was the way I was getting mad and the intensity that accompanied it. I kept thinking the strength of these emotions had to be the aftermath of our trek through Cancerland and thus we then had to make a pit stop on our journey at the therapist's office...



* A special thanks to Erin Melarkey for graciously going out of her way to help me during a very scary time. Erin, many, many thanks to you.