From my daughters perspective

Written by  Jenny jaydub26 and crossposted to Get Out Gertrude

I’m not the only creative writer in the family both OD and MD have talents in that direction too.

MD is finishing her degree in primary (elementary) school teaching and as part of that she has to take a general education paper, that is one not related to the other course papers.  She decided to do an English paper and one of her assignments was to write a short narrative essay on an important experience.  This is what she wrote – she got a great mark for it and I think it captures some of our family dynamics perfectly.  

Standing in the gardens surrounded by flowers, trees and shrubs, I thought of the photo on the wall at my parent’s house. It was old, the frame was starting to fade and the gold detail flake away. The photo itself was still filled of colour and I could still remember that day. Eighteen years had passed since that photo was taken, my mother’s hair once long and curly is now replaced with a short wispy cut and there are scars on her chest and neck from her endless battle, my dad has aged with time, and the three girls are all grown up. In the photo I was six and wearing my favourite blue dress with little black bows printed all over, my older sister was wearing a colourful jumper and her long dark hair tied up in a bun. My little sister YD standing in the middle of us two, a big smile on her face as we held her hands tight to make sure she stayed in place. Mum and Dad were standing behind us, you can’t see it but they were holding YD in place as well. It takes quite an effort to get a good photo of YD.

“Smile”, eighteen years later and I was standing there, holding YD’s hand so she stayed in place once more.  We moved around the Botanical gardens, having photos taken in various different areas. We stood by an old wooden gate with rusted bolts and nails, moss was starting to grow over the wood in patches and it sagged close to the soft dark soil on the ground. My black heels sunk slowly into the ground like an anchor lowering into place. Photo after photo was taken, and my smile started to fade and feel fake as we moved again to a new part of the gardens for a change in back drop. Then I heard it, the start of one of YD’s meltdowns. She grizzled and groaned, mumbling about how she doesn’t want any more photos, then it developed into a cry and scream.  I could understand her frustration; we had been taking photos for over an hour. People started to stop and look; this is nothing new to my family. I walked up to my little sister as she was hunched over sitting on a seat by a big native tree, and gave her a long and tight hug.
She cried and told me how she had been trying hard but it was boring, she does not like waiting, its part of having autistic tendencies. I asked her why today was important. Why were we getting photos taken? She replied “because the other photo is old”. If only life was so simple, we were getting a family portrait taken as we do not know how much longer we have together, because my mum is sick. YD knows mum is sick but she doesn’t need to know the severity until she has too.

As we walk towards the cafe to have afternoon tea, I put my arm around YD’s shoulders and tell her she did well today. I feel an arm around my waist, its warm and pulling me tight. The hand is pale and thin. I feel an immense amount of happiness in that moment, its YD’s hand. She doesn’t physically show emotions like that very often. We share a special bond my little sister and I, it’s not a normal relationship but its only one that we understand and I am her best friend.

Our first family portrait on the wall at my parent’s house shows a young family with an unknown future ahead of them. Life has changed in many ways, we have all grown up and moved out of home, my big sister is getting married, YD has lived longer and overcome obstacles we didn’t know she would.
There have definitely been some hard times. But the new portrait, it shows a family of adults that can overcome anything, that are still standing all together and holding YD’s hands so she stays in place. Family portraits show more then who is in your family, they show who your family, as a whole, are together.

Why Writers Write (by Judy)

or perhaps just why I write, and why I think it’s worth trying to turn part of the blog into a book.

I know I’ve covered this before: I work things out as I write, I find out what I think and feel about something as I write, and it’s a form of therapy for me. As I was reading the wonderful Anne Lamott book, Bird By Bird: Some Instructions on Writing and Life, so many things rang true for me. I love the following quote:

this is another reason people write: people need us, to mirror for them and for each other without distortion . . . to say “This is who we are.”

I am only one version of Who We Are. There are billions more, but they don’t all write. I hope to write my book to not only have a voice, to give myself a voice for what I have and am going through, but also in the hopes that I may strike a chord with people — either to help people understand what it’s like living with Stage IV breast cancer or for those with Stage IV breast cancer. Perhaps those with metastatic breast cancer will be able to read it and recognize some of themselves in it. Perhaps they won’t feel so lonely and out-of-touch with the healthy world. Perhaps they will have some “AHA!” moments, moments that give them a connection to someone else, even if it’s through the pages of a book. Perhaps all of that will help someone as they delve into their own journey with metastatic cancer.

I hope so, anyways. I know when someone has written something, whether in blog or book, that I can relate to on a deep level, it’s helped me. I know that when I was first diagnosed with Stage IV Inflammatory Breast Cancer, a very rare cancer, I felt alone. I had breast cancer but it was a different cancer than the usual — Invasive Ductal Carcinoma — so there were some things that I couldn’t relate to with women who have IDC. I know that when I first met women online, a few of the women on Mothers With Cancer who also have IBC, I felt like I wasn’t so alone in the world anymore; I didn’t feel so very lonely in my disease.

As a woman, and especially as a mother with a disease like this, that was a gift. I hate that anyone has this disease, I really do. It’s a club none of us want to be members of; it’s a club that we wish and pray had zero members; but it’s a club that, if we have to be a part of it, we don’t want to be in it all by ourselves. I feel an instant comaraderie with these sisters in IBC, a feeling of “yes, you know . . . . you know.” How I wish they didn’t . . . . but how it helps me that they do. That’s just another one of the contradictions of having cancer.

Writing for me is a balm to an uneasy soul, a way to start mending a broken heart. It helps me in ways that I’m not even sure I know about yet. It fills me up and it lets things out, things that if kept inside of me will fester and rot and perhaps become bitter. It’s helped me in learning to Let Go.

It’s a strange journey, going through old blog posts to see what will remain in the book, what won’t, and what needs to be re-worked a bit for clarification. It’s kind of like looking at old home movies, remembering where you were in life at that time, going through those emotions again. Some of it is painful and some of it is joyous, but all of it is mine. My journey, my feelings, my mistakes, my triumphs, my sadness, my joy, my tears, my laughter. Regardless of what has happened and some of the pain that’s been in the journey, I own it. It’s mine . . . but it might strike a chord with others as well. If it does, if it helps even one person . . . well, then I’m glad. I can’t bring myself to say that it’s all been worth it because I still wish I had never had this cancer. I don’t know that I’ll ever be grateful for the cancer, even as I’m grateful for some of the lessons I’ve learned along the way. Yet another paradox of living with metastatic cancer.

I look at the woman I was when I was going through cancer the first time, and she teaches me things. On the other hand, I can see how much I’ve changed, learned, and grown. It’s bittersweet. It’s taught me how very precious and beautiful life is, but the lessons have come at a cost.

I’ve learned — and continue to learn — so very much, and so I write . . . .

I write.
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Cross-posted to Just Enjoy Him.

“C” Yourself on Facebook (by Judy)

From More Birthdays on Facebook:

Can you “C” yourself helping the American Cancer Society? We think so! In preparation for the second season of their hit show, “The Big C,” Showtime is making $5 donations to the American Cancer Society for every person who posts a photo of the letter “C” to their app. So get creative and join Colbie Caillat along with many others and SHOW us what you “C”!

Link to this page:
http://apps.facebook.com/cyourself/

like I did:

http://bit.ly/qHfGF1

“What Gives You Hope?” (by Judy)

I follow LIVESTRONG on Facebook, and today their status was:

What gives you hope?

I find that a fascinating question. Hope is an elixir for those of us with terminal diseases. At least it is for me. I don’t know what I’d do without Hope; I don’t know how I’d live a full life without Hope. I can list many things that give me Hope and will probably omit some, but I’ll give it a try.

1. God and His continual grace
2. Prayer — mine and others
3. Energy Boy — wanting to stay alive to see him grow up
4. Absent Minded Professor — his love and support
5. Other family members — their love and support
6. Good, loyal friends — ditto
7. Good appointments with my oncologist
8. Knowing that with some people, this becomes more like a chronic disease, something to be managed.
9. Having a lot of treatments for my disease, as my oncologist tells me.
10. Research into the disease and hope for a cure someday.
11. Uplifting music.
12. Laughter.
13. Purpose.
14. Writing.

Like I said, I’m sure there are many more, but those are the ones I thought of off the top of my head.

You don’t have to be a cancer survivor to need hope — everyone needs hope in their lives. What gives YOU hope?
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Cross-posted to Just Enjoy Him.

Hmm…. a rambling update of sorts (by Lyn)

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.