Horse Play and July 14th

My entire life when I was younger centered around my master plot of getting a horse. It was made clear to me that it wasn’t going to come by way of a real horse, so I would always pretend that I had a horse and at times I would go as far as to pretend that I was the horse, just to keep things fresh. That doesn’t mean that I didn’t put up a good fight to get a real horse though. I can remember coming home from school one day and part of my daily routine spanning 2^nd-4^th grade (as anyone’s was) was to read the “miscellaneous” and “animals for sale” classifieds in the Elko Daily Free Press. Why would I do this you ask? Well the obvious answer is that I was looking to see what horses were on the market, duh. I would compare prices, height in hands, calculate price per hand as compared to the other horses and breeds, then I would pretend that I owned these horses and I would name them. I was a total weirdo. The sad part is, I still do this, except I research the hell out of Frye boots. Ask any of my friends. I’ve become a local boot consultant. Anyhow, one particular day after school when I was perusing through the classifieds, I found a great deal on an Appaloosa Mare. She was very old and many hands tall. In other words, she was a big ole horse. I knew that she was the horse for me, so I picked up the phone and called the number. No one answered, so I left a message saying that I was interested in buying their horse and asked that they call me back. It was the perfect plan. I would set up delivery of the horse to my front yard so when my parents came home from work they would see a horse in our yard and because we didn’t have a trailer to drive her anywhere, we’d have to not only pay for her, but keep her! She wasn’t going to live in our yard naturally, because I already had researched the cost of boarding her at the local fair grounds. Screw you Gifted and Talented test for not qualifying me! I just devised a plan on how to school my parents into getting me a horse in my early elementary years. I am either extremely gifted or a psychopath, or both. Great. Things are starting to make sense now…I can’t remember when the horse owners called back, but they did. They spoke to my parents, and as you can imagine they were pretty confused, both parties. I did not end up with a horse. So, I then proceeded to pretend that I was my own horse (Plan B). I stopped reading the newspaper and started barrel racing after school. Except I didn’t have barrels (I used cans) I didn’t have a horse (so I used myself on rollerblades) and I didn’t have a score board to use to time myself (I used a stopwatch). I would proceed to “barrel race” myself I guess, up and down the sidewalk and try to beat my best time. What a gem I am.

Point being, I went to very strange realistic and imaginary lengths to try and get any time I could with a horse. I never would’ve imagined that 20 something years down the road that I would be blessed with the best horse experience anyone could ask for.

July 14^th Aiken Equestrian Rescue

We went to a horse rescue ranch this morning. I met a horse named Fia Mia. When I first walked up to her she glanced up from her trough and swished her tail. I glanced at her and walked down to see another horse whose head was peeking out of his stall. I stood there and gave him a pat and enjoyed taking in all of his “horseness.” I heard a snort and turned around. Fia Mia had her head out of her stall, so I walked down to see her. As I approached her, she hung her nose out and was waving at me in a sense. The closer I got, the farther she hung her head over the stall until our faces were about 4 inches away from each other. Our eyes locked and immediately, I had chills. Fia Mia pressed her cheek against mine. My eyes welled up with tears. I could feel a breakdown happening, so I stroked her nose and walked through the stables and out into the open field to take a couple of deep breaths.

We rode around the ranch and Marco loved feeding the horses and riding in the golf cart. When we made our way back up to the stables I stopped back by Fia Mia’s stall. Same thing happened, she walked right up to me again and layed her head on my shoulder and pressed her weight into me. It was the strangest feeling, I could feel her weight, but could also feel mine leaving me. Not my physical weight, but emotional weight was lessening. My shoulders felt lighter, my stomach and back felt lighter, my jaw didn’t feel tense. We stood in this entwined human and horse hug for what seemed like forever. Before I knew it, a rush of emotions come over me and my neck and chest feel wet. I had so many tears running down my face that it feels like I turned on a faucet. My eyes became cloudy and I couldn’t stop crying. Fia Mia would pull her head back and stare at me every once in a while, then would wrap her neck around me and pull me into her body. It was absolutely incredible. I let her hug me and I stood there and cried my little heart out, not caring who was standing around watching or what people who be saying or questions I was going to have to answer once I was done. I let all the bullshit go and stood there in public, being hugged by a horse and cried. Fia Mia absorbed all the fear, anxiety, worry, distress and whatever other toxic feelings were overwhelming me. That horse single handedly (even though she’s a large horse, get it?) let a wall come down for me and allowed me to take a real breath, not the short thick aired breaths that I had been surviving on for the past weeks.  There truly are no words that can even describe that moment for me, even reading this back over I think the writing sucks and doesn’t paint the picture of what it was like for me in that moment, and then I realize, that is the beauty of that memory, that makes it my own and unique. I can close my eyes and remember everything vividly, yet I can’t possibly put the moment into words What I can put into words though is that I did not journal any more on my vacation. I didn’t have to run upstairs and hide to release any feelings I was having, because there was none. I played with the kids on the fairway, chased Marco around the neighborhood, swam with him in the pool, smiled, laughed and enjoyed those moments that I had missing because I was too damn paralyzed with the unknown. Fia Mia gave me the gift of “being” and that is something that I will never, ever forget and something that I appreciate every morning when I wake up and see her framed face on my gallery wall. I got my horse after all.

 

 

July 11th and Pamela's Introduction

July 11^th

My first day in South Carolina I wake up sick to my stomach. I make it down the stairs and head into the hallway where I hear my mom, sister and aunt up talking. I assume my mom has already told my aunt (she was not aware of what was happening) what was going on and it seemed way too early to tackle that subject so I hied in the hallway like a weirdo debating whether I am going to go back upstairs or head into the living room and get it all over it. I take a deep breath and decide to face the music.

Luckily no one mentions anything to me about it and I’m thankful. We eat breakfast on the porch and I tell my mom that I’ll talk to Linda (my aunt) when and if I’m ready. My mom says that was fine and she feels hesitant saying anything because she doesn’t want to ruin our vacation. I agree because I haven’t seen this side of the family in almost 9 years and I’m not sure if it would be worth it now to say anything, even though Linda is the only person in my family who has ever been diagnosed with breast cancer and it would be helpful to speak to her, but I’m not sure about the timing. I mean, when is the correct time to slip that information in? “Hi Linda, I’ve missed you, it’s been so long. Sure, I’ll take some French toast for breakfast. By the way I have Breast Cancer. Do you have any orange juice?” There is no way to approach this without it being incredibly awkward. Lord knows I would drop the bomb on her then offer to make her a sandwich since that seems to be my M.O.

The day goes on and we take the kids to the pool and it becomes a great distraction. After dinner my sister takes the kids on a walk down to the pond and my mom takes her wine (lucky bitch) out to the porch. Linda and I are alone in the kitchen and the timing just seems right. Each time I attempt to ask her to talk, my stomach fills with knots and I start sweating. Finally I suck it up and ask if I can talk to her about something. I start rushing through and fumbling on my words because I want the words out just as fast as I want this cancer out of my body. I think that I am secretly hoping that the faster I say it, the faster I will beat this thing, like it’s a magical correlation of a cure. Insurance companies would sure hate that hidden cure! As my verbal vomit continues to happen I see tears well up in her eyes and then something happens in terms of her response that has not happened to me yet. We both just start hugging, then laughing. It feels so good to laugh. I used to laugh really hard almost every day, one of those days seems forever ago now. Linda totally gets it. She starts telling me all of these funny stories that happened with her prosthetic and people’s reactions to awkward situations with it. She shares her experience with telling those around her, their responses and her treatment. It was in this interaction that I received something that no one else has been able to give to me…understanding. It was so relieving to hear someone else talk about their experience, and to sit and listen instead of having to beat a dead horse about it. Where does that saying come from by the way? “Beat a dead horse?” I would never do that, for one it’s creepy. Why are we beating something if it’s dead? Isn’t that a diagnosable mental disorder? And second, why a horse? Horses are the best, if we have to beat a dead animal, why can’t it be something like an armadillo or a snake?

Our conversation was like a surge of energy for me, I was laughing, listening and actually enjoying talking to someone rather than trying to pretend to enjoy myself. Linda gave me a gift that no one else has been able to give me…I now feel 100% ready to move forward and get this shit cut off of my body.

Let’s go back when I mentioned my aunt telling me funny stories about her prosthetic. She assured me that they, too, would happen to me and boy they happen on a daily basis. Rewinding to her though, she tells a funny story of being a teacher and pulling up to school in her car. She was wearing a turtleneck that day. She gets out of her car and goes around to the other side to get her books out and as she leans back up after bending over she notices that her prosthetic has crept up into her turtleneck and left a huge lump in her neck. She frantically was trying to push it back down into its rightful location as school was ready to begin. She also dove into a pool in Mexico and her prosthetic ejected out of her suit across the water. Sure enough, when she guaranteed that the same would happen to me, she was right…and now I would like to introduce the comedy portion of this entry called “Darn you Pamela!”

First off let me introduce you to Pamela, my prosthetic. I have two sizes:  C cup and a D cup. Darin has named my C cup Pamela and my D cup Dolly. Pamela was worn while I was still pregnant and after delivery I had to put her up on the shelf and pull out the heavy artillery, Dolly. Let me tell you that these things look like giant cotton balls and in no way resemble the shape of a breast. When I don’t wear it, it’s obvious (one side C/D cup one side 4^th grade girl), but when I do wear it, I have a very strange sized boob competing with the natural one. Either way, it’s a circus. Pamela is a trouble maker. She doesn’t like to stay in one spot and is constantly getting in trouble for roaming about the cabin. She is a gypsy prosthetic. For six weeks after my surgery I couldn’t wear anything on my phantom boob side, well I wasn’t supposed to wear anything. But I found ways around it (more to come in another blog). I would pick Marco up from preschool, run my daily errands and just hang around with one boob and a big pregnant belly. I was very attractive. On the day I got Pamela, I popped her in and went to pick Marco up from preschool. When he saw me he comes flying up to me and in front of his teachers and classmates be shouts, “MOM! You got a new boob! Hey guys, my mom got a BOOB!” Was I embarrassed? No. Was I mad that my 3 year old just called me out? No. Did I find it hilarious? YES! Plus, what an observant little guy. His teachers started laughing and his friends peeked up from playing and looked at me unimpressed. On another day, I went outside to Marco’s playground to get him. He comes flying off the slide clearly with an ulterior motive. I squat down to hug him and he reaches down my tank top and pulls out Pamela quicker than I can grab her and holds her up above his head and takes off running. Pamela has just been mugged at a preschool. Marco shoves Pamela up his shirt and starts running around yelling that he just got a new boob. This time, his friends are impressed and they all start chasing him. How in the hell is a piece of gross lopsided cotton more fun to play with than playground equipment? I am helpless against this gang of thugs and watch poor Pamela get smaller and smaller in the distance.  

In my first post I talked about letting things go. These experiences have helped me let go of any sense of normalcy that I wanted. Besides, being normal is boring. Plus, if I am in the .01% of people that will be diagnosed with Paget’s while pregnant, my life is going to be anything but normal. I should’ve starred in Pure Luck. More to come on “Darn you Pamela!” but coming up next is the most incredible experience with a therapy horse that you can imagine…

Doesn't it Sound Great? and July 10th

July 10^th

There is something to be said about lessons learned when we push ourselves out of our comfort zone. I can’t blame myself for not wanting to go to South Carolina and feeling uncomfortable about the trip. Here’s how I hear it in my head when the Gods were planning my trip: let’s take a healthy young lady, give her breast cancer, oh yeah, let’s make sure she’s 6 months pregnant too. Then, let’s send her on a trip. But make her go with a 2 year boy who is half cheetah, half lunatic. Let’s make her trip long, like a few 4 hour flights, then a really long layover in between the flights. I think we’re taking it too easy on her…what could we do that would really bring her to her knees? Got it! Let’s make sure she can’t drink any alcohol or sit near her sister on the plane. I’m not dramatic. I’m not dramatic. I’m not dramatic. The lesson learned, as you will read over the next few blogs is that something absolutely incredible happens to me on this trip. Yes, this trip that I so eloquently described as a ball full of fun earlier. Going out of my comfort zone provided me with a pivotal moment that I will never, ever forget and that I will forever be grateful for. I can’t wait to write about it. But, it’s not in today’s blog. SORRY!

I flew to South Carolina today. Marco was unbelievably good on the plane. It’s been a very long day and I am drained. We left at 6:00AM and arrived in Aiken, after driving for an hour after we landed around 9:00pm. Marco has been a serious trooper, entertaining everyone with songs about “Papa’s beer” and other interesting creations. I’m tired, edgy and just want to sleep. There were numerous times where I started panicking on the plane and I felt like I was going to explode. I know at some point a public meltdown is going to happen and I am trying my best to avoid it. I don’t know what exactly won’t let me put my guard down around people, but once I get around people I refuse to let on what’s truly going on. The panic attacks still happen, the constant outbreaks of sweat- especially in my left armpit (WHY?) and all these jumbled up emotions, but I repress all of it once I leave my house and am in public. As I was sitting on the plane, Marco was asleep and I started to write in my journal. Just starting to write,  I could feel the vomit creep up my throat, I start sweating and shaking. A fucking full blown panic attack starts. I look back and my sister and mom are sleeping. I look next to me and Marco is asleep. I look across from me and Maddie and Jack (my niece and nephew) are watching a movie. I NEED SOMEONE TO HELP ME! I am just getting ready to lose it, tears fill my eyes and some person in front of me turns around and glances at me. That one glance, thank god, snaps me out of it and I smile at them. They smile back and I am saved by the bell. Now, if only a less bloated younger Mark Paul Gosselar was sitting near me…It’s hard to explain, but I have no idea what is going to happen if I melt down in public, which is why I’m scared. I think it’s because I won’t be able to control it and I don’t want to answer a bunch of questions or to have people feel sorry for me.

When we arrive in Aiken all the kids plug in and recharge their batteries I’m not talking technology here. Marco goes into full blown crazy mode and when this happens there is no off switch. Everyone is drinking, hugging and laughing. I am watching everyone else’s vacation start and I just want to sleep. I am the luckiest one on this trip because I get the pleasure of staying sober and sharing a room with a 2 year old, 9 year old and 12 year old. It’s almost midnight. I am in a really pleasant mood with each second that ticks by with no sign of nighty nighty time yet. These kids are prime college student party candidates and I am the old cranky lady that calls the police on their house party because it’s interrupting my Murder She Wrote. By this point I almost use every offensive word I can think of to make these kids go to bed, because everyone knows that cussing and yelling makes kids sleep. Before “cuss fest 2015” erupts, Marco comes and lays with me. He curls up and tells me I am his best buddy. My first reaction is to start crying out of guilt because of all the bad words I was associating with him in my head, then I just start laughing because this is what makes a 2 year old awesome. I close my eyes and wake up in the morning to Marco wrapped around my neck like a cat. I don’t recall having any nightmares but my sheets are soaked in sweat and my whole body is tense and sore. All I want to do is go home.

To Go or Not to Go and July 9th

July 9^th

I have kept two running journals. One on my computer because I can type a lot faster than writing by hand and then another journal in a spiral bound notebook. Sometimes the dates backtrack because I would alternate back and forth depending on what I felt like doing at the time.  

For a few months prior to my diagnosis my family had a trip planned to South Carolina to visit my aunt, uncle and see my grandma for her birthday. She’s turning 90 something. The reason why I don’t know her exact age is because I don’t ever see my extended family. Plus, once you hit 90 I feel like anything after that could be called at any point so why keep track? I just say that because I feel bad that I don’t know how old my grandma is. But, I do know that her name is Ellen and that she used to be good at baking pies, so take that you judgers!

Anyhow, this trip was planned and just happened to land on the week before my surgery. My surgeon said that she wanted me to go on my trip and enjoy myself. One last boobie hoorah before I was getting rid of that piece of junk. That is not a direct quote from my surgeon. Pretty soon, my entries will be much more light hearted and not so dark and intense because an unbelievable turning point happened in South Carolina, but for the time leading up to my surgery things were crummy. Without further ado…

I was up until 3:00AM this morning worrying. I can’t sleep. I’m afraid of the nightmares I keep having so I am going on strike against rest. I’ll show you, stupid sleep! I haven’t had any in 2 years anyway, so just watch me go another few weeks! Plus, I am feeling overwhelmed with my own worries and taking care of everyone else and worrying about how my friends and family are handling everything, especially Darin. Marco wakes up at 4 AM so I stay awake the rest of the day.

Today was really hard. I’m not sure if being exhausted sparked everything but I’ve cried most of the day. I think things are settling in and the enormity of the situation is becoming clear. I have fucking cancer and I can’t believe it. I am pregnant with cancer and that to me just seems so unfair. I am young and healthy. I don’t have any family history of breast cancer except for one aunt. I am a hardworking, honest, kind person. Why the hell is this happening? I feel like I can barely function. I try to hold it together in front of Darin and Marco. I go the laundry room to “steam clothes” and I just close the door and cry. I start steaming clothes that don’t need it, just so I can hide in the laundry room and cry. The upside is, our clothes look brand new. Tears keep coming and I feel exhausted. When I try to talk I start crying, so I just say that I have more clothes to steam.

I’m supposed to leave for South Carolina tomorrow (with newly steamed nice looking clothes mind you) and the thought of entertaining Marco for hours on end on the plane and in the airport, getting up at 4 AM, trying to be patient and nice to everyone and being in a very loud and busy environment for the next 4 days sounds miserable to me.

My parents come over and they can tell something is wrong. We are sitting outside and I just sit and stare off into the yard like a zombie. My dad asks if I still want to go and I can’t lie. I say, “no”, but I feel obligated because he’s already bought me a ticket and there isn’t a way Marco would understand why we aren’t going. My parents sit quietly and tell me that I don’t have to go. I tell them that I’ll think about it and decide later, even though I know that I’m going to have to suck it up and go…

 

Nightmare on Allen St and July 11th

Saturday July 11

I have experienced nightmares my whole life. I get some pretty intense ones that leave me to wake up in my closet or screaming and crying. Usually after a nightmare like that I am a wreck the rest of the day because I am plagued by exhaustion and my mind keeps running back certain parts of my dream and I can’t focus. These nightmares are usually brought on by stress, so as you can imagine I’ve had many of them recently. My dad also has nightmares and I can't tell you the number of times that I've heard him yell, scream, flip out of bed or have an argument with himself. To an outsider, it may seem humorous to watch but when you're stuck in a nightmare, there are few things that are worse.  

I have been afraid of going to sleep lately and even though I am exhausted I would rather stay up because everything that I am internalizing during the day is being played out in some freaky and disturbing interpretation when I fall asleep and I wake up with my heart pounding and drenched in sweat. But, there are times where I am so tired during the day that I just have to succumb to it and hope for the best. Marco and I took a nap this afternoon. I had a horrible nightmare involving a snake again.  The dream was intense where I kept getting water in my eyes and ears, so I couldn’t see or hear clearly but we were all running from this snake. There was a group of us but the only people I could recognize were Darin and Marco. At one point our only hope to escape this snake was to hike down this really steep cliff and Marco was way ahead of Darin and I. I was having a panic attack that he was going to fall and I kept trying to quicken myself up to reach him and couldn’t. This voice was narrating my dream  and says, “Sometimes these things need to happen.” Hearing this sent me into a total panic because I knew something bad was going to happen but I couldn’t move fast enough.  I was screaming out of fear and sure enough, Marco slips and rolls off the cliff. I stand there paralyzed as I watch my baby boy fall off a cliff and into a pile on the dirt below. I am screaming and thrashing. Sick to my stomach, screaming, crying and ready to jump, I wake up to Darin sitting next to me. I can feel the tears streaming down my face and my throat feels sore from screaming. For the rest of the day I am dazed and feel beat up. In fact I don’t recall doing much after that besides sitting around with an ice pack on my neck because I can’t stop sweating or crying.

There are certain things that happen to us in our life that are too painful to remember or even think about. This nightmare was one of them. I am just plain sick to my stomach when I read over my journal and copy this into my post. Typing is hard because my hands are shaking and my eyes are tearing up. There is too much emotion packed into my situation to explain, but to have a dream like this is almost incomprehensible and I really don’t want to revisit it anymore, so this is where I am going to leave off for today.  

We all need more fruit snacks and July 8th

Wednesday July 8

Marco never sleeps all night, nor does he sleep in. In fact one of the first times he slept through the night was after we had him almost hike 5 miles by himself through Zion. He crashed when we got back to our tent and Darin and I sat in awe at what it was going to take to get that kid to sleep. As long as we kept feeding him fruit snacks he kept hiking. So in my mind, fruit snacks leads to eventual sleep, which is why I always have bits and pieces of fruit snacks in my pockets, purse, car and pantry. It’s the most important food group in our life right now.

Marco sleeps in and me, my mom and Darin need to go to my Dr.’s appt. We haul him over to Mariluz’s house while her and Mike are still in bed. I know he’s feeling the aftershock of everything and that’s why he crashed hard last night and slept. As much as I’ve been trying to protect him from the mess, I can’t. It looks like the aftershock has been the equivalent to fruit snacks. For what it’s worth, I prefer fruit snacks.

I asked Darin to take a different route to the Dr.’s office. He laughs and says, yes. Everyone who works at the Dr.’s office seems to look at me sympathetically when we walk in. I try not to look at people for too long because I am afraid of breaking down. I am afraid of a lot of things and am trying to not let my mind get out of control. The Dr. discusses with us her concern with my ultrasound, even though it seemed clear, this cancer is still almost always associated with underlying tumors. In twelve years she has only seen 5 patients with this cancer. She has never seen it in a young pregnant woman so our conversations are full of ethical dilemmas and grey areas because of the lack of additional tests we can conduct and only being able to go off of “what ifs” and the little information that has been gathered on Paget’s Disease. My Dr. is very intense, but comforting at the same time. I am grateful for her and have a strong feeling that I can trust what she says and that she’s going to kick ass and take names...my type of lady. After hearing her explanation of my situation and options of treatment plans, I decide (I had actually decided on Monday of this week, but had not really expressed it) to move forward with a mastectomy first, a possible removal of my lymph nodes second and a breast reconstruction third. Every step is carefully calculated because I can only undergo anestesthia for so long until there poses risk to the baby. Two procedures (mastectomy and lymph node removal) were too risky, however so was one surgery, because if the cancer has already spread to my lymph nodes then I may be screwed if I wait for too long. But, we won’t know anything until I can send my removed tissue off to pathology.

 I do feel a sense of relief when I actually say out loud that I want to get a mastectomy and when it comes down to it, it’s just a boob right? I mean they’re already in bad shape and if I now have the opportunity to get a newer model I should jump on it, because after all, it is an opportunity. Darin asks a lot of questions. He is so smart, but things that are not black and white he struggles with. I can see him trying to make this situation less difficult by calculating risks and balancing statistics, but it all boils down to the fact that I need to make the decision that is going to bring me peace now and for the rest of my life. When I speak to the Dr., my mom and Darin just stare at me. I can’t tell if they think that I am not making any sense at all because everything seems to be moving in slow motion. When we begin to discuss my mastectomy the Dr. says that if she was in my position, she’d make the same decision, which makes me feel relieved with moving forward.

The medical assistant sends me to scheduling and Darin keeps asking me if I am SURE I want to do this. When I say he keeps asking me, I am not over exaggerating. He literary keeps asking me over and over. I am not answering his question in hopes that ignoring him will make him stop, which is such a stupid intervention to use with him because it NEVER works. It works well with children, but not 33 year old husbands. He just assumes that I can’t hear him, even though he’s practically sitting on my lap. With each time he asks me THAT question, I begin to feel hot and sweaty and irritated because I feel he is questioning me and down playing this whole situation. I was almost as if he was making me feel dramatic and crazy for opting to remove something that potentially was going to kill me, if I didn’t kill it first. This decision has given me the first sense of calm and relief in three days, actually seven days of terror (I had a feeling it was cancer since my biopsy). I snap at him in the waiting room and make everyone uncomfortable, then immediately feel bad. My mom puts her head down and does what I do when I feel uncomfortable…pretend like what I am seeing is not happening. I used to get in trouble a lot in school for screwing around and whenever I got called out by my teacher I would put my head down and start working furiously and pretend that she was yelling at the “other” Allison in class that was clearly the problem student. I feel like I want to scream because it’s my body, my breast, my piece of mind, my psychological wellbeing, my life at risk…then I stop and am reminded that this cancer actually belongs to all of us, not just me.

 

 

 

 

Sorry, Not Sorry and July 7th

       This is where a turning point for me happened and I started my journey of “letting it go”. I started worrying over sharing this information with people who needed to know, like my bosses. I then started to worry about hurting feelings of those who weren’t going to hear the news from me directly like family, co-workers, friends, yet I was starting to have anxiety over having to share what was happening repeatedly. It was getting to the point, where I wanted to just deal with it and move forward. It seemed like the reaction I was getting from everyone was so bad that in order for me to move forward and kick this cancer in the ass I needed to limit my interactions with as many people as possible.  This whole "who should I tell personally?" was like trying to figure out who to invite to a wedding or birthday party…”If I invite Barbara, then we’ll have to invite her sister and cousin.” For those of you who know me well, you know how much I hate birthday parties...After much criticism from a certain neighbor, let’s just call her Mariluz for now, she helped me realize that I have got to stop worrying about inconveniencing people. I was in the early stages of coping with this stupid cancer for crying out loud and I was worried about hurting someone else’s feelings who would get the news second hand. Plus, I had zero answers on anything except for the fact that I had breast cancer. What type of conversation could I possibly have with somebody? "Hi, I have breast cancer, but that's all the information I have. What did you have for lunch today?"

       It took a few days, but once I was able to unhook that cart o' guilt it was pretty liberating. I was able to move forward and be empowered with the thought that if someone was upset that they didn’t hear the news, that it was their problem, not ours. Sorry, not sorry.

 

July 7th Tuesday

I was up all night. Not really thinking about anything in particular, but just up tossing and turning. I can tell I have a lot on my mind but my brain has put up a mental block and I cannot access any type of processing of the situation. I feel like I am just stuck in mud. I get out of bed at 5:00 AM and watch the sunrise in the playroom. I research breast cancer support groups and research Paget’s Disease. Darin stays home with me in the morning and we decide to go to breakfast together. Everything seemed fine and I was glad to be getting out of the house and going to do one of my favorite things (EAT!). We laughed, ate breakfast and had a normal time that a normal couple would have. I drove us home and a song came on the radio that I hadn’t heard in years. It had no significance to me, except for one portion of lyrics that talked about a little boy sitting at home all alone while his mom was out looking for money to feed him ( I will give/send $5.00 to anyone who can guess the name of the song. Added bonus, you can make money while reading this blog!).  There was no particular significance to the meaning of this particular lyric either except for the words “your son”. It kept playing over and over again. I could feel a response happening in my body that was unstoppable. I could feel the food traveling up out of my stomach and into my throat. I could feel the sweat pouring out of me. Tears started filling up my eyes, but I had sunglasses on and it wasn’t noticeable yet. Darin was rambling on about something and I could make out the tone of his voice but I couldn’t make out a single word he was saying. All I could hear was the repetition of that lyric. I pulled the car over suddenly and broke down. When I say “broke down” I don’t mean I cried and then felt better. I sobbed. I shook. I hyperventilated. I cried really hard. Like snot running out of my nose, soaking my shirt. I was drenched in sweat and ready to vomit. Darin pulled me out of the car and was trying to hug me but I could barely stand. I looked up and noticed I was in the CVS parking lot, cars were driving by and people were staring at me. I wondered what that looked like to someone, this, what appeared to be “unstable person” having this huge meltdown in a parking lot?

We get home and Darin has me lay on the couch with a blanket. I’ve stopped crying by this point and zone out on the couch. I started to feel somewhat better and told him he was fine to go to work and that I would call him if I needed to. I told him how worried I was to tell my boss and that I didn’t think that I could go up to school to do it because I didn’t want to see anyone else. Darin said to ask him to come to the house. I still have no answers on if the cancer has spread anywhere and I don’t know how to explain my situation to anyone, but school is starting soon and I need to get a plan in place. I told Darin that I’d be fine, so he left for work. 2 minutes later he marches Mariluz over to the house and apologizes for ratting me out about my meltdown but that he knows that I need help with telling my boss. She yells at me in a jokingly way that I need to let people help me and that she’ll be back in 30 minutes. Darin smiles at me and waves goodbye, because he knows if he sticks around any longer that I’ll yell at him for going to get me help.

I call my mom after she leaves and we cry together on the phone and she says she’s coming in. I told her I woke up and things were sinking in a little bit at a time and that I was scared. My phone rings while I am on the phone with my mom and it’s Freddie from the Dr.’s office. They moved schedules around and got me an appointment at 1:00 to have an ultrasound. I feel relieved and thankful that people have been working so fast on my case.

Mariluz comes over to clean my house and her eyes are full of tears. I can’t cry, I just feel bad for her because I don’t want her to be sad for me.  I am still numb . My mom shows up and her and Mariluz cry together. I just stand in the kitchen and give them Kleenex like they are watching some tear jerker movie. I am still numb. Darin comes home for my appointment. I am grateful but feel bad that everyone is giving up all this time to be with me. I can’t cry or have a reaction. I keep looking at the clock because the time is coming for us to leave for my appointment, but my bosses haven’t showed up yet. Finally with about 10 minutes to spare Bruce and Scozz show up. I instantly begin sweating, shaking and pacing. My eyes fill up with tears. I act happy when they show up, but they are both looking at me concerned when they see everyone who is in the house. We sit down at the table and I start to fumble over my words. They are both staring at me and I can tell that they know something major is happening. Darin is standing behind me rubbing my shoulders. I blurt out that I have breast cancer and they seem calm. I start to feel embarrassed, like I am overreacting to my situation so I start talking really fast and stutter over my diagnosis.  Luckily I look at the clock and see that I need to leave for my appointment and Mariluz agrees to stay and discuss the details with them. The whole way to my appointment I get hung up on whether I am over reacting to this whole ordeal and begin to feel guilty for people feeling concerned for me.

I am the youngest person in the Women’s Breast Clinic by many years. By MANY years. I walk by to use the bathroom and I see women peek up above their Good Housekeeping magazines to look at me and my pregnant belly which makes me wonder what people are thinking. I go back for my ultrasound and it’s painful. My right breast is sore and so are my stitches. The tech presses really hard over my stitches and it makes me cringe. We are led to a really cold waiting room and I start to get irritated that no one is having any fun. I have hardly laughed at all today and that makes me feel shitty. I download the Ellen DeGeneres game “Heads Up” on my phone to pass the time. To make a note of this experience, don’t ever have my mom on your team. For one: she doesn’t know hardly any answers, for two: she starts with these laughing fits, which are very entertaining, but not good for winning.  The Dr. comes in and says that the ultrasound did not show any tumors in my breast. I get a call to see Dr. Chu the following day at 8:00AM.

I don’t remember anything else for the remainder of the day. Except Marco asks to sleep with us and falls to sleep immediately. I lay awake in bed all night because my nightmares have set in and I’m scared to go to sleep. 

 

 

 

 

 

Breast Confessions and July 6th, 2015

When I was pregnant with my second child at 33 I started contemplating getting my boobs done after breastfeeding for the second time. My beautiful boobs that I had in college had been shot after breastfeeding my son, so I started toying with the idea of getting implants once I was done having children.  I mean, I got a lot of mileage out of those puppies in college, and embarrassing enough (now that I have kids) I am positive that if youtube were available way back when, my breasts would’ve had their own channel. I had a lot of fun in college, and you know what? I don’t regret a single moment. I've always had a weird obsession with not only my breasts, but just breasts in general. My good pal Amanda* told me that one of her first days of high school (after moving from Arizona) that I told her in the girl's locker room that she needed to show me her boobs. She NEEDED (as if it were part of locker room protocol) to show me her boobs? What the hell is wrong with me? Can you imagine how uncomfortable that was for her? She still brings that shit up 20 years later like I bullied her. I am lucky I didn't get a sexual harassment case thrown at me. I only have two guesses as to why she decided to be my friend that day:  she was either A.) afraid of what I was going to ask her to do next or B.) was hoping that later on down the line I would show her my boobs. Which, I can't confirm or deny if I did or not, but I am sure that I did. 

SO getting back on track, my sagging boobs were the foundation to start the conversation and justification as to why I needed to drop a few G's for a pick me up (no pun intended). Plus, my weird right nipple that wasn’t healing a year and a half after breastfeeding was visibly a major problem and conversation starter. It should’ve healed right?

 

*There are many main and supporting characters in Cancerland. I will create something like credits after a movie one of these posts so that you can make sense of who these people are.

July 6^th 11:42 AM Monday

I am informed over the phone that my biopsy results came back positive and I have breast cancer. When I hear the information given to me, my heart starts racing and I instantly become drenched in sweat. The medical assistant, Lorena, would never know on the other line because I stay cheery and friendly and act like I am putting in a to-go order for a sandwich as she explained to me that I needed to see the Dr. that afternoon at 4:50 to discuss my treatment and to bring my husband if I needed to. I hung up the phone, fell into a lump on the floor and began to sob. My son came running in and said, “What wrong mommy?” I dialed my husband at work and sobbed for him to come home. He couldn’t understand a word that I was saying and at one point asked if I was playing a joke on him. I then called my mom, told her my results and she said that she’d come right over right away. When Darin came into the house he had a look on his face that I will never forget. His body was slumping forward and he made this wimpering sound and just grabbed on to me. The first thing that ran through my head was, "This poor guy, loses his mom to lymphoma and now he's going to lose his wife to cancer." He started to cry and I just stood there. Watching someone I love breakdown always send me to the opposite end on the emotion scale and I am able to hold it together for the other person. It's very strange, it's as if my body seizes up and will not let me show any emotion in the hope of staying stable for the other person in need. My parents arrive shortly after Darin and I watched as my mom and dad entered the house crying. My dad went directly to the back of the house and cried. He couldn’t look at me or talk to me. I even tried to offer him a grilled cheese (who doesn't love grilled cheese when they're sad?), but he said no. In fact he looked at me like, "What the hell is wrong with you? NO, I don't want you to make me a sandwich." Good thing he didn't know about me making Amanda show me her boobs in the locker room. He would have really been mad at me for that...My mom held me and cried, saying that this should’ve happened to her. I just watched as everything moved in slow motion. I was in shock. I called my sister as well and she also came in with her kids.

It was the strangest thing. My dad was crying and refusing sandwiches, my mom was crying and accepting my Kleenexes that I was handing out, Darin kept telling me to stop taking care of others, Marco was playing with his superheroes and Gobi (our crazy dog...no joke) was absorbing everyone's stress and walking backwards across the floor to only stand in front of the wall and lick it for hours. I stood and watched all of this go down and inside I was laughing because it was an absolute circus going on and I had a front row seat. My life. Lord help me. It was here that I came to the conclusion that I needed to pull it together and be the stable one for everyone I love. You see cancer doesn't impact only the person diagnosed. When someone gets cancer the whole family and support system gets cancer. Everyone is traumatized, everyone is grieving, everyone is scared and everyone is hoping for the best.

It was the longest afternoon possible and it was pouring rain. That's a nice depressing setting for a cancer diagnosis, don't you think? We all just kept busy kind of operating independently of eachother. When we left the house, Darin wanted to drive and couldn't figure out where he was going and he refuses to use windshield wipers, even though it's raining. I kept reaching over and turning them on and just wanted to scream as we hit every. single. red. light. possible. I hadn't learned yet how to "let things go" as I mentioned at the beginning of this blog so, I might have had a minor fit in the car.

When it was time to meet with the Dr. I was shaking and sick to my stomach. I don’t really remember that appointment. But, one thing that I did pick up on was that my Dr. had been crying before she came into the consultation room. Either that or she had a cold, but she definitely didn't seem to have a cold. She informed me that I had Paget’s Disease and we had to start the hard conversations about treatment and balancing decisions carefully with my pregnancy. I have the type of cancer that is almost always associated with additional tumors in the breast. I also have the type of cancer that on average is diagnosed in women around 57 and only makes up for about 3% (if that) of cancers.  There is little to no research on Paget's.  I find out that I need an ultrasound to detect more cancer in my breast and then we’d need to make a decision from there, on what we need to do in terms of treatment. I am sick to my stomach that I am even having the conversation yet weirdly focused at the same time. I wonder if I am going to have to terminate my pregnancy? Then the worry sets in that I may possibly be leaving behind two small children, and how that is NOT an option.

I come home, still in shock but feel good that we’re moving forward with a plan, even though I have no idea what that is yet. I do know that a mastectomy is my best choice and if I want to live, that is what I need to do. We have a discussion in my living room with my family on the prognosis and everyone seems relieved. My parents decide to go back to Elko the next day and I agreed that I would go to my ultrasound alone to detect the additional cancer and I would be fine.

Mike and Mariluz come over for dinner that night. Mariluz can’t stop crying. I am still watching everyone’s reaction, yet not having one yet.  Since breaking down when I first got the news, I have not shed a single tear. It is like I am watching all these people go through emotional pain and I have yet to connect the pieces that they are crying for me. We eat dinner in the living room and hang out. They both look and seem very concerned. I love them like they are my family and have that weird reaction again where I can't connect emotionally because I feel like I need to be strong for others around me.

I sent a text to my boss that night asking to meet the following day because I was going to report back to school in a few weeks. Trying to figure out how I was going to balance all this news and be a counselor to middle schoolers was overwhelming me. How was I going to pull that off? I was shaking so badly I could hardly type. I kept changing my response so that it wouldn’t scare or lead anyone to think anything really bad...I was not looking forward to sitting down with my admin and telling them what was happening because I care about them so much that I was scared that my guard would come down and I would break.

 

 

Diving In

Here is some background information that will help shape this whole insane situation. I started journaling a few days after my diagnosis

February: Darin and I find out we are pregnant with baby #2!

Early June: I meet with an OB in my group about weirdness happening with my right boob during a prenatal exam. I was told to wait until my regular OB returns to get her take on the situation.

Mid/Late June: I meet with my regular OB (whom I absolutely love and would move her into my home if I could) and I can tell that something is wrong by her reaction. She orders a biopsy to be done with a breast surgeon and tells me that it will take about 3 weeks because the surgeon is very busy. A sick feeling in my stomach begins to grow.

Late June: The surgeon's office calls and I'm told that they have moved people around to squeeze me in.

1st week of July: I meet with my surgeon and we discuss possibilities of the infected area. As I am leaving the surgeon's office, she grabs me by the shoulder and looks me dead center in the eye and says, "I'm sorry." It is this moment where a chill is sent down my spine and I realize that on some unrecognizable level that I have cancer. I have a biopsy done and then go home to research a form of nipple cancer called Paget's Disease. (In researching I find that I hold every possible symptom for Paget's. Awesome.)

4th of July: I sit at my sister's house and watch my family swim in the pool. I can't talk or interact with anyone and just sit and zone out because I have a sick feeling that something bad is happening. The morbid thoughts keep coming and I can't even convince myself that I am overreacting, because I already know what's coming my way.

July 5th: I have a terrible nightmare that I am told over the phone that I have breast cancer. Drenched in sweat (like, soaking through the sheets kind of sweat) I wake up with fear looming over me. My heart is racing and I am having trouble catching my breath. Darin is sound asleep next to me- I am glad he doesn't wake up.

July 6th: My nightmare comes true, I am told over the phone that I have breast cancer...

It is here, that I will start to share my series of journals that I kept once I received the news. The beginning is pretty dark for both myself and my family as we tried to navigate this whole crazy situation, but it does lighten up.

So...without further interruption-let's dive in!