I just want to first comment on the recent posts from these lovely ladies. I can relate on so many levels to it all though I am in a different phase currently. There was a time when I was first diagnosed with IBC that I wanted to talk about death, all I could think about was life in a spiritual fashion because I didn’t know if I would beat it. My mother had just passed away a year before from cancer and I watched the last breath leave her body, so the heavy thoughts of the seriousness of IBC weighed heavily on my heart. Then I remembered HOPE, and my fighting spirit kicked in and I focused on beating it. Not necessarily on living a well rounded life at the time, I was too scared for that I think, but I did have hope and I did feel like a warrior. A lone warrior LOL. My life quickly changed from average life working full-time with a 2 year old and 3 year old happily married to unemployed, very sick, and noone around me understood. The people that were supposed to ‘get it’ turned into confused weak aliens and my new support system was a world of women online that I had no idea even existed and most of whom I still haven’t met in person.
I actually had to shut out family members who weren’t positive. I simply said, if you can’t support me as much as some stranger I’ve never met, don’t talk to me at all. Fear is a powerful thing, and when I’m scared I am sort of like a feral cat backed into a corner and if you’re not a friend you were an enemy. Right? No. Necessary? Possibly. There’s a lot that I look back on and regret from the first year of my cancer diagnosis, but I have to be very gentle with myself because my support system wasn’t good. We had no guideline or role model to show us what to do, how to help each other. The growth I’ve experienced is that it isn’t their fault. It wasn’t their fault. The desire to support me was there, but it wasn’t coming in the way that I wanted or needed so I couldn’t see it. Now that time has passed I have since found understanding and reconnected with said family members who were more than happy to come help me at my recent surgery. I vowed this time, to recognize the intent behind people’s actions and go off of that. I’ve learned to have understanding for others looking in at me from the outside. I probably scare the shit out of them. A 30 year old with 2 small kids going through everything we warriors do, and doing it independently and fiercely. Yes, I’m sure looking back they saw me as pushing them away and their own fear stopped them from meeting me where I was, and my own desire for survival on my terms stopped me from including them in my battle.
Needless to say I have learned a lot about myself and about others since my diagnosis. Life, the meaning of life, the ‘right’ way of life is something I think about all the time. I have yet to find a place where I am comfortable just being. It seems like I keep pushing through pain to find the space where there is no more pain and it won’t come. Sometimes I ask myself why me, why now, why not. Lately I’ve been looking to the future a lot, praying a lot, begging the universe for some release. Then I remember that I have the power to focus on hope, healing, and happiness.
I’m not talking about my cancer with the last paragraph. I haven’t said as much on my blog, but I found out that my husband- who I truly love with all my heart well before cancer- was cheating on me when I was battling for my life. I found out this year, and it’s been like getting a cancer diagnosis all over again. Actually I would prefer chemo some days. So while at first I shut him out, I’ve been allowing him to talk to me and to listen and then I talk. It just feels like pain. Healing, sure. Cleansing, sure. But pain, more unnecessary pain that I don’t think I deserve and that makes me angry, which makes me frustrated, which makes me sad because I can’t control it. More and more I learn about myself and at the same time about others’ limitations. He has stepped up to the plate at taking my punishiment and wrath and making it right but will it ever be enough? I don’t know. I can’t say, I can’t control how I feel. I would give anything to be nonchalant and flippant and not care. I would trade anything for that. But I’m stuck here in the pit of I give a shit and also, responsible for what happens next. Do I want to risk getting IBC again and not have him in my life- this man who I love and is remorseful- or is it – do I want to risk getting IBC again and be still married to a man who betrayed me when I needed him the most. Or is it, do I take yet another leap of faith and trust (but verify!) that this person has grown himself, found his own love, and will never hurt me again and jump in with the hope that IBC will not come knocking on my door again but if it does my marriage will not be an issue of it.
I don’t know. It’s too much, it’s overwhelming. The gift and the curse of cancer is that we know how precious life is. How much time can I waste on anger or hurt- even when it hurts so much all the time? That becomes the question. I imagine that if I was a normal 32 year old without cancer or parents gone, and everything was fine I would walk away with my head high and my hair flapping in the wind giving him the middle finger for not seeing how awesome I am, not caring what he might have been going through or what led to it. But now… now I know unfortunately that life is bigger than me. It’s not all about me, even when it should be. Ah well… that’s my rant.
Physical update, I had a double latissimus breast reconstruction 4 weeks ago. Last weekend I ended up with a bacterial infection and almost got admitted again. Every day this week I have had to go into the plastic surgeon’s to have my back drain tube wound opened and drained and packed because it was fluid that collected there that caused it.
My left cancer side ‘frankenboob’ is not doing well. It’s failing and the surgeon says we have to do another surgery in a few weeks when I’m better this time taking fat and skin from my stomach. Hopefully it goes better this round.
I am NED still according to the pathology reports from the samples the surgeon sent when he did the reconstruction. So I have that to be thankful for, and I am. It is possibly one of the main things that keeps all the pain balanced, the physical pain and the emotional pain… that no matter what I’m still for now NED and still have a chance to see my kids grow up. Anyone else sometimes feel like, is this really my life? I know I do, but thanks to cancer, I’m thankful for most of it and the parts I don’t like I have hope I’ll figure that out in time.