When mommy got sick

Hello everyone,

It is me OBB. It has been a tough start to the week for me - caught some crappy flu over weekend that totally knocked me out. There is nothing worse then being stuck in bed before you actually have to be "stuck in bed" for a month. I was so frustrated and was furiously trying to still get all my work done. That plan obviously went to the pits.  I think my oncologist put it best when she called me yesterday after checking me out earlier in the day for any dangerous infections and said "Are you okay? Ok I know you are okay but are you really okay?" Hmmm... tough question. I am functioning - I wake up every day, do the same thing, I find things to laugh and smile about every day and I feel like hope is alive and well. So yes I guess I am okay but I am oh so tired and my body is just breaking down.  And I could think of about a million other things I would rather do then get bones removed and replaced with metal. So I had to listen to my body and finished work today in order to focus on getting myself healthy and ready for this surgery which is now days away. Tomorrow we go in for a full day of pre op tests and meetings with my medical team. I might actually be given some clue as to this whole mysterious procedure that I know so little about which will help us plan the next 4 weeks of our lives much better. And did I tell you that Captain AC (my mom) will be coming over to join in the rehab party!  So now I will look forward to a weekend to rest - get a pedicure, be with my husband and daughter and enjoy my mobility before the real work begins on Monday.

Something that has been weighing on my mind alot since my last entry has concerned my daughter. I have written alot about her and how central she has been to my attitude towards this whole cancer experience. She makes me suck it up and just be what she needs most - her mommy. And I succeed in being that...most of the time. The last time we went through cancer, she had just turned one and we didnt even think about informing her about any of it. It wasn´t relevant to her nor could she understand. Of course she noticed differences in her mother and what I could do for her but it just isn´t the same as now. She knows I am different from other mommies now and that I have pain. She gets distressed when I can´t get out of bed or I have to go to the doctors. And she takes her toy medical kit out alittle too often to give me a routine physical. But at the age of three do I really want to introduce her to the horrific word that is cancer? I feel like it is too early and that it might just be scary. One of my earliest childhood memories of sadness was when I was about the same age and I woke up early one morning to find everyone in the house crying. My grandmother had died of a heartattack the night before and everyone was grieving her. With my limited understanding of the revolving door that is life, I just started to cry along with everyone else because I didn´t know what else to do. I didn´t understand it. So I feel that maybe it is too much to tell her what is happening in great depth. I will tell her that mama needs to have an operation to fix her ouchy and wont be able to pick her up for awhile but that it doesnt change how much I love her. I just want to be there for her at the end of the day and she wants to be with me in any way she can. I guess I will need to find the little things that we can share while I recover like Eskimo kisses, puzzles on the bed and watching Tinkerbell together. I often think about her, years on, reading this blog herself. Seeing first hand the trials we went through as a family and also how she was the ray of joy and hope for me through the darkest days. So I guess I have my answer - I want to maintain her innocence just abit longer. It is a cold hard world out there and I dont want to expose her to it any earlier then I need to.

I thought it was fitting to put in an excerpt from the book "The Year of the Pale Sunflower" by Silvia Roncaglia and Cristiana Cerretti. This book was written by two breast cancer patients who were also moms, to help children deal with their parents becoming ill. One of my surgeons brought this book back for me from the European Breast Cancer Conference last year and I recommend it to anyone facing a similar experience. Facing cancer with young children is a different experience all together - you need different strategies and ways of explaining things. But in the end we all want and need the same thing - for our families to stay the same - intact and together.

"That´s it," Mum explains, "nothing really belongs to us. You are my children because I brought you into the world, but you belong neither to me nor to Daddy; you belong to life, which is much bigger then we are. And Daddy and I, we too belong to life, just like the sunflowers, the moles, the bees and the birds...like everything. And this life, so vast and mysterious, turns in cycles; there is a time to plant and a time to harvest, a time for summer and a time for winter, for the flower to bloom and the mole to eat its roots. There´s a place for a different, pale sunflower too. And there´s a time for sickness and a time for health. "

Right now we are experiencing our time of sickness but the clouds will eventually clear and the sun will shine again and the flowers will bloom. And just like that - a new chapter begins for us.

OBB

The Flat Side of Life

Happy New Year everyone! It is 2013 and we can all start fresh again. What is very exciting for me is that now I can´t say "Oh yes I had cancer last year." Instead I am nearing the 2 year mark in a few months and things seem to be going fairly well. I still cant believe that is was so long ago now. I have often thought back to what i was doing this time last year, the year before...I always do that. Get stuck in the past - call it my sentimental side. I also look back at pictures taken months before it all kicked off and think...hmmm I had this crazy nasty cancer then but I didn´t know it. I look so different to myself. There is a lightness to me, an innocence that is no longer there.  No one can deny that it has been a tough 2 years for all of us in team OBB and the weariness is sometimes even too much for even YSL touch eclat to hide! :)

Recently my daughter, who just turned 3 on New Years day, informed me that I did not have any boobs. Now of course this was said in Norwegian as she has recently decided English was totally 2012.  She told me in a non chalant manner that pappa didnt have boobs, she didnt have any boobs, and mama didnt either but her aunty definitely did. I have not really talked about my C story with her but of course this was something I was expecting. Of course she knew mama had ouchies but she hadnt been totally aware of the anatomical differences between myself and other women. Now she knows that I am different. She even sometimes mimicks breastfeeding when she pretends to be a baby on my chest and I feel slightly awkward with my two big scars in the place where my breasts used to be. She also knows that her mama needs medicine for her pain and last week when she accompanied me to the hospital for a blood test, she proudly came home and told her pappa that she had taken mama to the hospital and she got an ouchie. She gently touched my arm and pulled the sleeve up to show the proof. How did she get so intuitive at the tender age of 3? Now I have told her that mama´s boobies got sick so she had to take them away to be okay again. She seemed satisfied with that explanation...for now. I know this conversation is far from over but the way i look at it - I am fortunate enough to be having this conversation at all. I am here to tell her my story in my own words so she can understand what she needs to and I can be there to fill in the blanks. There is less fear in that.

Now I have written lots about finding the bright side to a double mastectomy (without opportunity for reconstruction yet). Not so funny fact - in Norway it isn´t standard protocol to reconstruct in the same operation when there is already cancer detected. You must wait years (like 5 or 6 years!!!) to get a new pair of boobs and after all the treatment, radiation and time...the operation is not so simple. :( So anyways I have noticed lately that often one of the first things i notice about a woman are her boobs. This isn´t in a creepy perv kinda way ok! I self reflect through that other person and wonder if people can notice that I have none just as I have noticed they have little ones, big ones, saggy ones...I think I am missing them more and more these days as I struggle to find outfits and scarves that hide my flatness as wearing prosthetics is not possible with my pain problems. About 80% of my wardrobe is redundant now. And when I go out shopping, I need to go with the more boring options and the lingerie section is completely off limits to me. No Victoria´s Secret angel here! I also have noticed the few times I have gone swimming, how strange it is to be freezing cold and not have any nipples. After years of swimming competitively, my friends and I came up with many terms for what happens to nips in the cold - party hats, ENS (erected nipple syndrome), those babies could cut glass...Funny yes but now I don´t have any such external temperature devices. I just feel cold...everywhere. Another thing is when Great Aunt Flow comes around every month...there is no warning in the chesticle department. I have no sensation and no idea what is happening. Lastly I genuinely feel less attractive and feminine. Thank god I have an incredible husband who loves me for me and not for a kick ass set of boobs but I still feel robbed. In a way I don´t think I ever fully appreciated them when I had them and now that they are gone, I pine for what was. I also think that if by some miracle I get the chance to have another child, how strange will it be to be pregnant with no breasts? Having a big round bump and then nothing above. And the fact that there wont ever be an option to breastfeed again. That mammary ship has sailed off into the deep white sea. I actually remember when I had my first surgery before we knew anything was seriously wrong and I told my good friend that I was most concerned that I might not be able to breastfeed on one side again. She told me that it was very evident that I was a very good and caring mother as my first concern was the well being of my future as yet unborn children.  Oh how I wish that would have been my one and only concern. Now the bottle will truly be my only option if I even get a second chance. But I guess I can be thankful that I got the chance to give my daughter the best start the first time around. That is a gift in itself and I am so grateful I got to experience that with her and as a woman.

I searched the web for a quote to conclude this entry about the loss of a part of you. Unfortunately nothing I found was right so I thought I would take a stab at writing my own.

Losing a part of you. Something real that you can feel, touch and see. It takes something deeper along with it and you are changed forever. The contours are no longer there, the feminity you had is now diluted by pain and the knowledge of what that emptiness embodies and represents is something you can never forget.

An extra tight hug from OBB

My Mommy Has No Boobies

"While we try to teach our children all about life, our children teach us what life is all about." Anonymous quotes


I have started and stopped a number of blog ideas this week and have had trouble settling on just one coherent train of thought. I am tired this week and my body is hurting which is never a good thing. Like I have written a hundred times before – pain signals concern, pain could be my evil nemesis knocking on my door again – no pain is ever nothing. But I do hope mine is nothing and I am instituting the 2 week rule. If it hurts for more than 2 weeks then it is worth a look see. For now I need to just relax.

My blog is inspired partly from a devoted blog reader and person I have known since I was a tiny little person. She wrote me an email following last week’s post and told me about a memory she had of me as a child. I won’t go into exhaustive embarrassing detail as it is a personal story but it was about a time she was babysitting me and my toddler curiosity prompted me to make quite a funny and direct remark about a certain body part of hers. Yes we are talking about the boobs people. When do I not really? My life is defined by those two lumps of fat these days. Well it got me thinking about how smart and observant children are. They rarely miss a trick and often tell it like it is or how they see it. My own daughter has become increasing interested in her own body parts and others people too. She is talking about them and pointing them out – in the privacy of our home of course! I realized that after next week, she will also realize that there is something different about her mama. I don’t think she knows that I am different already as she really has nothing to compare it to but she will be exposed to more and she will notice soon enough. How will I deal with that question when it comes? I can see it know – a full blown little people discussion at daycare about peepees, bumbums and boobies and my monkey blurting out that her mama has no boobies! I used to dread the time I would be asked to explain the birds and the bees but suddenly I have to think about how to explain cancer to my child? How did we get here?

I know she isn’t close to ready in terms of being able to understand it and I honestly don’t want her to. I always said that if I had to get cancer young while I was a mother then I picked a good time. She wasn’t so tiny that being away from her would break my heart or hurt our early bond but then she also wasn’t big enough to understand what was happening and will likely never remember any of this. But now I am thinking a lot about how to deal with this issue when it eventually arises. I want to maintain her innocence as long as I can but I also want to be the one to talk to her about these sorts of things. I mean who knows when she will jump on Google – seeing as she can maneuver the Ipad better than me already. So if anyone else has been there before me please send your pearls of wisdom. From what I have read it is important to never lie to kids and provide information but leave out the exhaustive details. It will only confuse them. So I guess I will do just that. Tell her that because mama loves her baby and pappa so much she had to get rid of some icky stuff that wasn’t good for her so she could be happy and healthy for them both. Easy in theory right? It is a delicate balance seeing as my own experience has its own impacts on her life later on. I don’t want her to afraid. We already have an utterly horrific conversation to have much later down the line which I am already dreading and that will be hard enough so for right now I think I want to keep things as light as possible for her. At the end of the day, we just want to protect our babies and just make everything right in their worlds.

I even feel like she is already picking up on things already this week. For the first time ever, she has told me the last few days that she wanted to stay home and not go to daycare. I almost teared up when she said “Mama – Ida home.” What was worse was that I didn’t have the physical capacity to stay home with her. I know most people would tell me that I am looking into things too much but maybe she is sensing both my husband and my own anxiety and worry over what will happen next week. Maybe on some level she knows something is going to happen and that she will be away from her mama for a while. I don’t know but what I do know if that I am going to make the next few days matter for her. It will be non- stop quality time with mama and there will be dancing and there will be cake! Lots of it!!

So this might be my last post as OBB (I am keeping the name cuz it is cool) so if I don’t check back in before operation day please send all your happy and positive thoughts my way around 10am next Wednesday morning. As each day goes by, I am growing more afraid of going through it all again. The waiting game is a real killer and I have never been the patient type. But I have learned over the past year that the things I am most afraid of never seem as scary after the fact. It is the build- up that is the hardest to swallow. On the upside I will get lots of really good drugs so I can dance with the unicorns up on the clouds up in the sky. Will write more when I have made my descent!

Your OBB