Graphic Change

Minor irritations. Opened up the weather app on my phone last night to find they'd changed the graphics. Harrumphed to Dearest One about it and thought how I dislike even  minor visual changes that appear in a touch of a finger.

Saw my grief/loss counsellor yesterday armed with a collage assignment completed. Stupid things really. Make me feel silly and childish cutting images out of magazines and pasting them to paper. Except when I was done I wanted to weep. I stood there puzzled at how a random assortment of pictures with jagged edges could evoke such feelings. I didn't let myself look too long or hard at what had appeared so innocently under my fingertips.

We look at the collage together and he tells me he has never seen one so linear. I've even numbered the pictures. We talk about linear and labyrinths and wanting things to proceed in an orderly fashion. True. And then he posits that life and my cancer journey is more like a maze. My hands fly to my face in horror and I tell him I would never arrange the pictures in a maze. Dead ends. Changing directions. Being lost. My worst nightmare. Except the journey has arranged itself in exactly that way without my permission. Which is the crux of the problem. The place I kick against until my toe bleeds.

Silent tears spring from somewhere far below the jagged mastectomy scar that runs across my chest.

He points out the colour of the poster board I've picked to paste my pictures on and it's the colour of the heart chakra. The place of emotions.

And so something as silly and childish and innocent shows the very deep child wound within me. The one who cried for order and control and the ability to predict what would happen next.

He rolls up the collage and hands it back to me with instructions to write a little every day about the pictures and my thoughts until I'm ready to tackle writing the story in a bigger burst of creativity. We put off cutting up the individual pictures and selectively burning them as the time is right. Symbolically burning and letting go of what they represent. And a torrent of tears roll down my face unleashing my child into a vast land of opportunity and growth if I can just embrace the graphic change in front of me.

Speaking Out Loud

"I feel like I speak a foreign language."

That 's what I said to Dearest One tonight after running into a long ago friend earlier today. She commented to me how glad she was that I was in a specific person's life right now because that person needs God. She thinks I'm going to open my mouth and tell that person of their need. Um. No. It hadn't even crossed my mind to mention God to this person. How presumptuous of me it would be to think I know what they need.

As nice as it was to see this long ago friend I told her that if she was waiting for me to do the reconnecting I didn't have the emotional energy to reach out. That felt much better than making small talk and nodding my head in agreement about how we should get together soon.

And she most likely grates on my nerves because once upon a time I really thought that if I could just sneak the word 'Jesus' into a conversation that I was doing my part to save the world. And so I tried.

Recently someone died who I long ago thought I would 'witness to.' You know, find the right words to nudge them into the kingdom. I spoke at their funeral about the time years ago when they put love into action and how I still think about and recognize those actions as much more loving than any words I could say. At the funeral lunch I said to friends how humbling it had been to find the person I would have thought at one time I needed to witness to, witnessed to me with their life. I was into words and they were into actions.

Guess which spoke louder.

Needing Some Lovin'

** Thank you for all the lovely comments. I just needed some reassurance in this tippy world we call our temporary home.**

Today I'm wondering what keeps you coming back to my blog.
Why do you bother?

I keep coming back to writing because it's how I process my life.
I used to journal instead. And granted, journalling was way different than what I write here but it was still a way to empty my thoughts onto a page.

Many years ago I was about to give up on blogging when I got an email from a stranger telling me how my writing had affected her journey. I leaned my head against the wall beside my desk and bawled my head off. I often forget that strangers are reading what I write. I think about the handful of people who I know read here regularly and forget that they are not the only ones.

Sometimes I see the reader numbers and wonder who are you?!
A comment would be lovely.
I will unabashedly soak them all up.
Some days are like that.

But It Wasn't

I watched as he gently arranged the thick blanket around the old man's shoulders, tucked it in between his legs and the edges of the wheelchair until the old man was wrapped up like a cocoon. Only then did the young man turn  and wheel him out the door. A twenty something and an old man bonded in their grief going out to have a smoke in a spring snowstorm. The young man was my son. The old man the father of someone my son had close ties to once upon a time.

This past week has been hard.
Really hard.
Two deaths in two days.
One funeral.

Tears streaming down the old man's face, his aged hand, shaken by a stroke, zig zagging its way to until the kleen*x finds his tears. A parent burying a child. Another parent burying a child. Both parents of the age where by all appearances, it very well could have been the other way around. I want to write that it should have been the other way around.
But it wasn't.

And nothing makes sense.
And nothing makes sense.
And it never will.

Unbloggable

Sorry for the silence.

Unbloggable things are happening to other people. Can't take the risk of it showing up in a search engine out of respect for the living. What a reminder that things happen every day to people unnoticed by the masses.

I hate this. I said the word "fuck" over and over again yesterday for half an hour straight. Some things are too horrendous to fathom. And yet we must wade through it.

It's jolted me awake to see that I am going to be just fine.
Prayers appreciated.

PS - I celebrated 25 years of sobriety on Saturday. Gratitude running over.

Ritual

"Ritual makes our reality safe."

That is the best tidbit I took away from my session today with a grief and loss counsellor.

No wonder I love rituals.

In Full Colour

"I gave up my breast for a grandchild."

Yep. That's one of the first things I said to Oldest Son and his wife when I woke from anaesthetic. Dearest One told me days later that I might want to clarify what I meant because I had been pretty loopy at that point. Narcotics or not, I knew exactly what I meant and why.

Funny how one can know exactly what they mean and think it's clear to others, no? So I explained to my daughter-in-law that being without my breast meant being without cancer and living long enough to be a grandma. Gracious woman that she is, she was cool with my explanation.

During the week before I had my mastectomy I listened to a guided meditation for those facing surgery and part of it talked about being surrounded by a magical band of allies in the operating room. In my mind that meant not only those who love me in the here and now but those who have gone on before me - the communion of saints - if you will. It was a comforting thought.

When I was wheeled into the operating room I looked around at the space and realized my magical band of allies would need to squish in tight if they wanted to fit. And so they did. When I was under anaesthetic I saw a beautiful, magical band of allies - all glowing an intense white - outlined in different heights like someone had taken a grey pencil crayon and traced their various heights in one long stroke. I couldn't quite reach out and touch them but they were close. In amongst the beings, who had no distinct features, was this little girl - in full colour - with very distinct features. She had run over to my operating table and was nestling back in between those glowing white beings when I saw her. Her face radiated such indescribable joy that I smile every time I remember her. While she wasn't a mini version of myself  I felt she was definitely related to me.  I wondered who she was. I thought of the (three) babies I have miscarried.

And it was this in-full-colour-little-girl I was thinking of when I told my son and his wife that I gave up a breast for a grandchild.

In September I will welcome my first grandchild. Boy or girl, my joy is indescribable.

Figuring It Out

"Your vulnerability in being present to what is could be triggering people's pain - pain they might not want to face. So their response to where you are at on the journey is a projection of where they are at not a reflection of where you are at. Perhaps the surgeon, too was uncomfortable with the places your truth was touching in his own life."

Such healing, hopeful words yesterday spoken to me by a therapist who I haven't seen for several years. Good to hear from her that where I am at is where I am at and nothing to feel ashamed of or embarrassed by. Being affirmed in where I am is doing more for me in this transition from health crisis back to 'regular life'(whatever the hell that is) than every suggestion that it is time for me to move on, get with the program, and put this experience behind me.

Last week's conversation with my long time friend was a turning point for me. I  breathed a huge sigh of relief and relaxed into acceptance of where I am at. And then my mood lifted significantly. That friend would tell me that it isn't something we need to go pay professionals for but something we used to do for others in friendship and community. I've found myself  feeling happy and then confused that I am feeling that way. I had to tell myself that feeling happy doesn't negate what I've been through and now I am on a journey of figuring out how to integrate it without feeling like I'm somehow betraying myself. My therapist told me yesterday this was totally normal and that I would figure it out.

Figuring it out is so different than having it figured out. I hope the first phrase is a life long one and the second one disappears from my vocabulary.

Resting

I spent several hours on the phone yesterday with a woman who's been pivotal in my conversion journey, someone who has travelled alongside me for over 25 years.

The night before I remembered this friend and how last summer she'd explained a long absence from my life during a most difficult time of her own. She told me that everything she'd believed had been turned upside down and she'd had no words. Ah, I thought, someone who knows what it's like to be rendered mute.

I could barely get the words out through my tears yesterday as I told her I needed her to tell me if the upside downness ends.

I'm pretty sure that that conversation did more for me than any professional help ever will. What a relief to hear someone say that the place I find myself in is not something to fix, but a place to rest in, in order that the work being done in the depths of me can be done.

Laying It Down

Every February I get a letter from the breast cancer prevention program reminding me to call and book my yearly screening mammogram. With a strong family history of breast cancer it seems reasonable, no? I'd been bracing myself for this year's letter and when it came I stuck it to my fridge and said out loud, 'you fuckers.' You see, last February's mammogram culminated in radiologists deciding the cancerous lump was a cyst and I was free and clear until this year's check up.

Had it not been for the weight loss, which led to the CT scan, which led to the needle biopsy, which led to the surgeon ordering a breast MRI, who knows when the breast cancer would have been discovered. Had it not been for the surgeon ordering the breast MRI, before it was realized that my pathology report was mixed up with someone else's, and then deciding to go ahead with it anyway after the correct pathology report from my needle biopsy said there was no cancer, who knows how this would have played out. The needle biopsy missed the tumour completely. What a soap opera.

A day after I got the letter I saw my doctor. As we talked, and the mammogram letter came up, he listened to me and then said, "you seem to be in the angry phase." I so wanted to reply,  "let's just cut one of your balls off and see how you feel about that, okay?"

How long will it be before I stop cupping my hand over the place where my breast was and mourn its absence? Two days after my mastectomy, as I stepped onto the mat that triggered the automatic exit door of the hospital, I felt my body hesitate. My right breast was somewhere in the building and for a moment I felt disoriented. I suppressed the urge to yell, "I won't forget you."

At my final appointment with the surgeon this week, with compassion in his eyes and firmness in his voice he said, "You need to find a way to move forward. Yes, mistakes were made. Those mistakes saved your life." Tears sprang up in my eyes as I recognized the truth in what he said. It's really the same as what the oncologist said to me two weeks ago. Examine the story I am telling myself. Don't let it define me. Through tears I told the surgeon, "The mistakes broke me."

Look at what it's cost me. Give me back what I've lost. That's really what I want to shout. I'm no longer who I was, no longer believe what I used to believe about just about everything in life. I am continually filtering thoughts when talking with other people. Trite answers I used to believe come to mind and I realize I don't believe in those answers any more. Examined and left wanting by my words I told a friend last week that I feel like I am being rendered mute.

And so I've made several phone calls reaching out for professional help in moving forward. Intuitively I know that some kind of ritual to honour my journey would be healing. There must be a way to move forward without feeling like I am dismissing just how deeply the twists and turns have affected me. A way to bless the journey and release the anger. I know that everyone who goes through an injustice of some kind must finally lay it down or become bitter. Lord have mercy.

The Stories We Tell

"The stories we tell ourselves affect how we live our lives."

That's the oncologist words above, challenging me to examine the story I tell myself about my cancer journey and my way forward from here. He's said it because I mentioned again about having so many twists and turns along the way and that perhaps that's compounding the awful side effects of the estrogen blocker medication I'm on.

In the echo of his words I feel lost, unable to grasp what it looks like to be finished with appointments and to move forward. I don't want it to be over either but I don't know why.

It takes a night's sleep to grasp that he was telling me: "You are cancer free, go live your life, don't let yourself be defined by this." A faint glimmer of hope stirs in me at the phrase 'cancer free' and I feel guilty that I have no energy or desire to do a happy dance even though I recognize it is good, good news. There is a part of me that wants to march back into his office and say defiantly, "I will never forget" and I think to myself what an ungrateful wretch I am.

I feel like I am being yanked in a game of tug of war with one arm glued to the rope in front of me and one arm reaching for the rope behind that is just out of my reach. I'm crying as I move forward and it's the mastectomy side's arm being pulled forward. Damn, it hurts.

It takes me a week to see that the oncologist was never asking me to forget what happened. My discomfort with moving forward comes from believing I have to either move forward or cling to the past. I breathe a sigh of relief when I realize that I can both move forward and honour the past. The tension between the two is much like the pull of my mastectomy scar every time I stretch out my arm.

While I don't want to be defined solely by this part of my journey I will never be the person I was before it ever again.

And that will always be my story.

Best News Ever

Was declared cancer free yesterday. Huge, huge, relief. Feel like I can now move forward. Thank you for all your prayers and support especially these past six months.

Bumping

"I don't want to walk timidly through life."  I say this to Fr. Charlie, my spiritual director. It is a relief to unload all my fears and hopes and gut honest thoughts. We haven't spoken since the day before my mastectomy. There is a lot of ground to cover. After several hours I leave his office, affirmed once again in my humanity.

I had almost cancelled the appointment because the weatherman had been forecasting snow and I have become a coward when it comes to winter driving. I find the need to talk myself through many things these days. It's as if well, because of the cancer diagnosis I realize on another level that if that can happen anything can happen. So I constantly have to remind myself that just because anything can happen doesn't mean it will happen. And like a boat gently tapping up against the dock, waves constantly keeping it in motion, I keep bumping up against fear of the unknown.

Fumbling The Ball

** "I'm getting less moody, aren't I?" He pauses and then says, "A little."  I start to tell him just how wrong he is. I am a LOT less moody. And then I start to laugh. Right. Dearest One walked right into a trap of the sort of "does this dress make me look fat?" variety. I let go of my need to be right and realize that even my protest shows that I'm not quite where I thought I was.

** "I didn't recognize you because you were so skinny." It's a few hours later and we're in the grocery store. I hunt up and down the aisles for something when I see Dearest One talking to an elderly couple we haven't seen since last summer. Back then we talked about how fortunate I was that they caught the pathology report mistake before I had my breast removed. I have no energy to tell them what came next. I duck around the corner and continue shopping. I stop to dig through my purse and find my cell phone. I expect Dearest One to send me a text and ask me where he can find me. Except he didn't. He came looking for me and then walked right by the aisle I was in because he didn't recognize me. I wish this made me happy.

** "Are you the wife?" Them's fighting words although the telemarketer on the other end of the phone doesn't know this. I tell him that no, I'm not THE wife. He asks me to repeat myself. I do. Then his voice takes on the hue of someone backing away slowly from the room and he tells me he will phone back later. Good call. I was getting ready to tell him I may be moody and I may be skinny but I am neither an article nor an adjective. Sigh.

The Little Engine That Could

It was -45C with the wind chill factored in this morning. The windows are frosted up nearly to the top but the sun is shining through them. The northern version of stained glass windows courtesy of Jack Frost. A good day to stay inside and keep warm.

I'm healing. It feels like there is light at the end of this year long tunnel. And hope that this cancer journey will truly be a distant memory one day.  I look forward to when I don't tag a post with the word cancer. My mood swings are lessening. My goal this week is to get through it without telling someone to eff themselves. So far so good.

I'm learning that skinny people really do need a cushion for their chair because otherwise their butt hurts too much to sit for very long. I had to ask only daughter last night if that was true because it's a brand new phenomena for me. After I asked her I excused myself and went and got a cushion for my kitchen chair so we could continue our talk via Skype.

I took a writing course last December where the instructor told us that a good writer didn't write about their relationship with God in a post because she said it put up a wall between writer and reader. That intimate place where really only the two involved could enter into it. I've mulled her opinion over a lot since then.

My prayers of late have mostly been silent ones. Except for the time after communion where I knelt and the only words that came to mind, in the vein of the little engine that could, were, "I need you. I need you. I need you."

Pinning The Tail

I've spent the past week trying to point in the direction of getting back to normal, whatever 'normal' is. One thing I've concentrated on is continuing to get my range of motion back on my mastectomy side and I am winning that challenge. From what I can gather I will feel the pull/tightness all the way across my chest for a good long time yet but am grateful that I can stretch further than I could last week. The day I can make a full snow angel motion with my arms will be a day to celebrate.

This past week was also the first medical appointment free week I've had in a very long time. It's made me realize just how much of my time and mental energy has centered on the next medical thing in front of me.  I told a friend that it's felt a little like playing that pinning the tale on the donkey game and maybe I'm starting to have some clarity in the direction I want to aim for now. Figuratively speaking I'm less dizzy and more clear headed.

One of the guided imagery CDs I've listened to throughout this process invites a person to accept their feelings of worry, fear, grief and anger as their inner truth of the moment, without self criticism or blame. That doing so will be encourage the healing process. The key word there is 'moment'. I felt relief and a bit of a chuckle the first time I heard that sentiment. Inner truth of the moment. A reminder that there are no permanent feelings no matter how much that seems impossible in the moment. It takes way less energy to acknowledge a feeling than it does to repress it. Funny how I needed to hear someone tell me that it was okay to feel all those things without self criticism before thinking that was an option.

I had a long talk with God today about wanting to feel other feelings. The ones that make me feel connected to other people and to life. I am tempted to chuck the estrogen blocking medication that has my hormones all awry and my mood in disarray. Then there is the fear that if I do that it will be my fault if my cancer reoccurs.  See how my brain works? I have bumped up against fear and my illusion of control so many times through all of this. Maybe not any more than before other than I am aware of the bump. More aware of the 'oh, here it is again, and again, and again.' in the way that is challenging its presence instead of being oblivious to it even being there. I guess that is progress. For today I'll take it.

Relief

Tumour test results came back today and I don't need chemo. I am so, so relieved. There is only a PET scan ahead of me before the end of the month - which will hopefully clear up if they need to investigate further why the AP node in my chest is enlarged and the node in my armpit. After that I am good to go. It feels like a huge weight off my shoulders. The doctor is also hopeful I won't be so bitchy now.

Some Fight In Me

That about sums up my day yesterday.

I went to my home group meeting for the first time in six weeks. Drain tube free. Pain free. Good weather. I was grateful that the hour drive was possible. I knew that getting out of my head was the best medicine for me. It would be a win-win for everyone. I sat in my chair before the meeting and felt such relief to be there even though I found it harder to be honest when people asked how I was than to fake it and be cheerful and upbeat. My ego gets caught up in wanting to be a poster child for breast cancer so people can tell me how wonderful I am. My ego will seek its glory any which way it can. It's not picky.

And then he came in and any hope I had for accolades vanished in about 15 seconds flat. He is like a father figure to me. He is as tough as nails and has the softest heart around. His way of dealing with the worry that my increasing weight loss caused him was to be gruff with me. We also have known one another long enough to have had deep conversations that have created a mutual respect of one another. He is the real deal.

So yesterday I was on my way back to my seat with a cup of tea when he hugged me and asked me how I was. "Not good." I tell him. "What do you mean 'not good'?" He said this as if it's against the law to not be fine. I looked at him and asked, "What? It's against the rules of being a human being to be not good?" "Yes." He said it in a 'you're darn tootin' kind of tone. And before the filter between my brain and my mouth had a chance to engage I looked at him and said, "Fuck you."

I had an internal 'oh shit I only meant to think that, not say it' moment. Then he laughed and said, "Good. You have some fight in you."

After the meeting I tell him I am sorry. That I hope I never say that to him again. He tells me that I need to be able to say things like that to people like him who can take it. I put my hand on his heart and say, "No. It's no excuse. I know you  have a tender heart and I don't want to walk on it." He looks at me and says, "I have no idea what you are going through." So few people have had the humility to say that to me and it brought tears to my eyes.

Glimmers

** little glimmers of hope the past few days have been a relief.

** thank you for your support and prayers. I think we often fail to realize just how much prayer can do.

** my spiritual director emailed me this week and suggested that I offer all that I feel right now, in lieu of spoken words, as a prayer to God. I had a really good cry in response to that.

** the sun shone today and so much more seems possible in the sunshine.

Off The Train Please

** As a child I made it through each day by looking ahead to something else. It was like living in perpetual limbo. That's what I feel like I am doing these days while waiting to hear what comes next in the cancer journey.

** Had another bit of fluid drained off my chest yesterday. I keep wanting to write breast instead of chest but it's not a breast any more so what do I call it? You know, that place where my breast used to be? It's a bit disconcerting to have a huge honking needle stuck in there and to not feel it in the least. When the doctor asked if he could use a bigger bore needle to suck out the fluid I was like, um, I can't feel anything there anyway so do what you need to do. I told Dearest One the other day that that side of my chest looks like a toad. A squished toad. I want flat, totally flat like it was before complications set in. I feel like I'm being hard to please. Jeepers, they removed the cancer, what more do you want, Hope?

** Got a copy of my latest CT scan report today. It reported not only the size of suspicious nodes elsewhere in the body - dear God please no more biopsies - but that the back pain I've been having for months is explained by a degenerating disc in my back. One less doctor's appointment needed now.

** the doctor I saw today was incredibly kind, compassionate and just plain decent. I told him how much I appreciated the way he practised medicine and how much difference it made from this patient's point of view. He told me how he has worried about my unexplained weight loss in case they are missing something. The doctors all confer that the tumour in my breast doesn't explain it.

He explained exactly what was happening in my body with the new drug from the oncologist and that it would take three months for my body to adjust. I told him I could handle anything for three months. It was the five years of drugs that was hard. Then I said, "Oh, hell, I can do anything for five years, one day at a time." I just don't want to.

For the second time in a week a medical professional suggested anti-depressants to help me get over this hump. We'll see. Hopefully all my posts for the next three months won't be estrogen starved brain cell induced writings.

** Yesterday I tried on winter jackets and was disturbed that the size I tried on was just about too loose. Not being in control of my weight loss is the most vulnerable feeling. And I feel guilty every time I write or talk about it because it is many a woman's dream to lose weight without effort. Millions have been spent in hopes of that promise.

** I can't believe how much I am hankering after certainty. Every time there is a new bit of medical information that leads to more questions than answers I can hardly stand it. Off the train. I just want off the train.

** Today someone, in response to my sharing the grief I am feeling at losing my breast, tried to tell me all the reasons I should be thankful instead. I just looked at her and said I need to go through the grieving and that none of her suggestions changed that. She tried to explain how I should have perspective in different words. I had to tell her that it didn't change the grief process. I could, to ease my own pain, and to make it easier for others, shove that grief way down deep, put on my happy face and pretend otherwise. But I'm not going to do it. I told my friend that I wasn't going to get stuck in the grief but I was going to go through it.

I don't know how to explain to people that just because I am feeling grief and expressing it doesn't mean I have no perspective, know no gratitude. It's not an either or scenario but a both and one. I feel intense grief and I feel grateful that what I'm facing is much less serious than some other people's. But dammit, I have to live through it and for once in my life I'm going straight through it and not try to sneak my way around it. Why is that so hard for people to accept? Why can't they celebrate that I am going through it instead of around it?

There's part of me that would love to pretend I am fine. But man, pretending my feelings are not my feelings has bitten me in the butt more times than I can count. I told my sponsor the other day that the only way I'm getting through this right now is knowing that feelings aren't permanent. And knowing that God is with me in it whether I feel his presence or not.

** Today in a parking lot I was driving behind a young woman who was walking arm in arm with a woman my age. They were so engrossed in their conversation that they didn't see me behind them. I watched their body language and it was so evident how fond of one another they were. I just about rolled my passenger window down, when they moved off to the side so I could pass them, to tell them how much pleasure I felt watching them so thoroughly enjoy each other's company.

And because it's all about me I longed for someone to walk like that through this journey with me.