Thursday, June 23, 2011
my ritual has changed-Happy 1 Year Anniversary
One year today. One year today I received the call that changed lives. How am I celebrating? I am getting a Herceptin infusion, wah-wah-wah. I actually don't even mind the Herceptin infusions anymore, I am getting close to the end of them and am thankful that I have been able to continue them the whole time and my heart hasn't given up. Today I remember who I was, and who I am. Below I copied some of my earliest blogs, I began writing the day I received the phone call.....here is just a glimpse of where I was then:
nights are getting harder
I shower at night, always have. I now cry in the shower, alone. My bedtime ritual has been stolen from me, and replaced with streaming tears, and gulps for air while my chest rapidly rises as I try to calm myself down. It is quiet in the shower, just the water running down my body, a body which is now foreign to me. I look down at my breast, swollen and bruised, yellow and dimpled like a pear and my arm pit, so sore that I can't wash my hair with my right hand and the tears come without any thought. I grieve in the shower too. For my husband, friends and family that are forced to go through this journey with me. For the woman I have lost-now hidden inside me, and for the woman I have now been forced to become--detached from her body, afraid, and numb.
I let the tears and snot run down my face. I give myself this time, my ritual has changed and I am working to embrace it. Maybe I need this time--I hold it together pretty good during the day--I am sick of tears and the panicky feeling I get when I think of what is to come. I need to wash it away before I go lay down for the night, before I try to close my eyes and quiet my mind of the racing thoughts that run a marathon of their own nightly. Water washes it all away, no kleenex to make my nose red and flaky (though it has begun to resemble my nipple quite nicely). It is gone down the drain--I step out and wipe everything away.
I am good for a period of time to be determined. I am good until I lay down, then the panic begins to come back. I feel it rise in my body like the temperature of water set to boil. As I write it is working its way through my stomach, soon to my chest--where a tightness takes over. I fight this tightness until my swollen, sore, weary body gives into sleep.
Today Scott ran his first full marathon today in under 4 hours! He is my rock, my strength and the person who I turn to at night when the tightness in my chest takes over. I am so proud of you babe! Love you.
crazy sexy cancer
I spent the evening with some of the inspiring women I am lucky to call friends (and all of them are amazing doulas or self-proclaimed "birth junkies"), I shared a bit of what is going on with me and left with the amazing feeling I always get--comfort, joy and a full sensation of love that is like the best pie in the world...
My last post was a bit bleak, but lets be honest here, none of you are reading to get the rosy-glow of what cancer does to someone. You are reading because you love me, because you know me, because you know someone who knows me, because you know someone who has cancer, because you have breasts, because you are thankful it wasn't you, or your mother, or your sister--or because it is you, your mother, or your sister. You are reading because you want to sort through all of the bullshit, you want to help but don't know what to do. You want to know I am not falling to pieces and that I am not my breast cancer. But I am a straight-shooter, I cut through bullshit and won't be feeling optimistic all the time, we are multidimensional and cancer throws a wrench in the whole damn thing.
I had a bone scan, they found a spot. Breast cancer likes to spread to the bone and the lungs and some other internal organs I can't remember. I will have an MRI on my femur to gather more information. Nothing changes really, if it is cancer........I will still have chemo and then possibly radiation on that spot on my leg. I met my surgeon today, my other surgeon is on vacation--wouldn't that be nice. I like my surgeon, I am waiting to hear from the office tomorrow to schedule surgery--about damn time.
Tonight I danced in the shower, A LOT. I danced for all the tears that I have cried in the shower, for the joy I was feeling, for my breast full of cancer and that I am a day closer to getting it removed, I danced to remind myself I can, mostly, I danced so I wouldn't cry... I wish I could tell you that things were getting better, that I was so positive in my thinking that I could heal myself with my mind. What I really feel like doing is lining up a bunch of melons and hitting them with a hammer, not sure what it would accomplish but I sense I would gather some sort of satisfaction........I will keep you posted if this comes into fruition.
Thank you to those who shared with me tonight, to those who are thinking about me now, and those who keep me filled with positive thoughts from miles away. I am not the woman who keeps her mouth shut, I never have been the quiet type, but in person cancer is a scary cloud over conversations and it brings tears along with gratitude to the well-wishing of others, so I stumble over my words...
Tonight I watched the trailer for Crazy Sexy Cancer--a woman I inspire to be, I am in awe and in solitude and as the heavy feeling of anxiety and the unknown washes over me while I lay down to sleep I hope that a bit of her will rub off on me... I am learning to be brave in my beautiful mistakes.
Well, there is no more basking in the denial centered movie reel that has been playing in my head. No more "hurry up and wait" scenarios...as much as I wanted surgery to come, it jammed a rock so far down in the pit of my stomach I feel a gaping hole, exposed, and insecure. My surgery is scheduled for Wednesday, yep, next Wednesday--three weeks to the day that I received the call that I had breast cancer. It hasn't even been 3 weeks and I feel like I have aged a year or more and have created a footing where I am balanced, unnerved and forcibly realistic.
Now that reality has smacked me across the face I am trying to find the path back to denial. It is was lovely there. I mean, I knew I had cancer, I was making appointments, putting my body through a battery of tests, taking notes, doing research, asking questions, crying, laughing, and dancing in the shower. But I didn't have a date, there wasn't a "beginning to an end" if you will. Now I have it. I am terrified.
Not only will I wake up without my breasts, these lovely ladies that have been with me through it all--but I will be minus 20+ lymph nodes. I am crossing my fingers I won't wake up as terrified as I will feel when I go under. I am working on ways to relax prior to surgery--coming to grips with it, feeling centered, "being in a good place." All the somewhat condescending therapist crap I would use on a client, but when you tell yourself that in the mirror it doesn't seem near as professional, supportive, or appropriate....it seems like a cruel joke.
I know that surgery is the beginning of a road I don't want to walk down. But if this is the road I have to walk, (what a shitty, shitty road) then I guess I better get my ass into gear and prepare for the journey. There have been thousands upon thousands of women before me, paving the way. I have an entourage on this journey, a pulse to my emotions--an entourage of support that will keep me steady when I begin to fall, or give me a push when I begin to hesitate--after all "drinking wine and thinking bliss is on the other side of this."
I can't sleep...thoughts are swirling and whirling in my head, even with my pain medication, sleep eludes me. As I lay in bed staring blankly at the television I debate on whether or not to wake Scott up. He has been my rock, well more like my boulder...that has went with little sleep these past few days. We watched a cancer documentary in bed and then he drifted off to sleep, leaving me wide awake and anxious trying to hold back tears and put out the fire of jealousy I have that he was able to fall asleep so quickly. I debate with myself if I should wake him up to lift the laptop onto the bed, my arms are not up to that task and at the present time my right arm and hand are tingly and unreliable to say the least. I decided that it was okay. After all, I can now get myself out of and into bed which means he can sleep without interruption for the majority of the night--this is a tiny exception.
I have to remain in an upright, sitting position while sleeping. I am a belly sleeper! Though my belly is so swollen at the moment that I don't know if I would be able to lay on my belly--it could possibly be like trying to balance on a ball. Either way, I miss sleep. The sleep I had prior to three weeks ago, prior to having the knowledge that I have cancer, prior to surgery, prior to anxiety and tears. I miss sleep that wasn't stressful, there was light at the end of the tunnel--sleep that didn't bring on pain. My sleep now consists of the knowledge that I will be waking up in pain--lots of pain. My chest gets stiff, my arms tingle and fingers go numb, my legs and feet are so swollen they ache, even when I don't move them. My sanctuary of a bed is now a torture device, and you can't get comfy in one of those.
My nighttime routine has also taken a horror movie twist. I get my drains drained. My husband lifts up my moomoo (yep, big zippered pjs that fit over my swollen body, chest, and 4 drains), and empties each drain into a cylinder, then records the amount of fluid. I can only imagine his impending excitement when he will begin to inject my belly with hormones prior to egg retrieval.........foreplay is definitely out the window. Our bedroom is now a partial medical facility and I am the only patient.
Life has changed. Not just in the removal of my breasts, a battle with cancer, swollen limbs, exhaustion, anxiety and bouts of anger directed at whomever is in earshot, but internally. I am different. My internal processes are changing, my view on many things in life and my overall expectations I have of others are shifting. Life altering experiences are unrealistic. You can't plan for what I am going through, your reactions, feelings, and outcomes. Positivity comes with a price, a price I am willing to fork over cash for. Positivity comes with planning, this is a dangerous element when you are unsure of how your future looks.
So I brace myself, and try to harmonize my thoughts and feelings. Not only of today, but of yesterday and tomorrow. This fight is going to take a lot out of me, but I am going to do my best to get the most out of it. "Everything happens for a reason", blah, blah, blah. I believe it, I hold onto it, but sometimes it's what keeps me awake.