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.