Feeling the love

slightly abridged version of post on my personal blog by Jenny (jaydub26)

This was actually supposed to be the first of two companion pieces ‘Feeling the fear’  is the other one.  I had started to write this when I got the news from twitter about Sarah.  I no longer was in the right frame of mind to continue writing this post and wrote and posted ‘Feeling the fear’ instead. 

As you know I’ve been feeling a little sentimental and weepy lately.

But…

I feel loved.

Even when fear and darker thoughts crowd my mind, that is what pulls me through it.  I am loved by my family, OH supports me in everything I do, and my girls show they love me every single day.  Often it is not spoken but on Mother’s Day when MD put as her FB status ‘ I love you, Mum xox’ it made me feel really good.  Not all 23 yr olds have that relationship with their mother (and/or are willing to admit it to ‘the world’ on FB)  Likewise OD writes about me on her blog and I can feel the love there as well.  Even YD ends every phone call with ‘Love you’. 

Through this journey with “Gertrude”,  I have felt loved by my wider circle of family and friends and I think deeper and more meaningful relationships/friendships have developed because of it.

“And I loved deeper and I spoke sweeter,
“And I gave forgiveness I’d been denying.”

Are some of the lyrics from the Tim McGraw song I mentioned in ‘Feeling the fear’ and I think they have been true for me. 

I even feel loved and supported by my University classmates.  While I have made some very close friends there as well there is also an underlying general message of support from all my classmates. One of them randomly proclaims ” I love you, Jenny” and others show their support and caring in lots of other ways.  They are empathetic enough to know that we don’t talk about ‘Gertrude’ at Uni unless I bring it up, but show they care all the same without being overly sympathetic as I pointed out in this post.

I have a few older school or church youth group friends  from my teenage years like ‘the  MRD’,  R and K who let me know they are thinking of me and holding me close to their hearts.  (And this is 30 years since we were in high school)

I know everyday people love me, which for half my life I believed that not that many people would, if I let them see the real me.  Blogging has allowed me to show who I really am and I now know I am loved for being exactly who I am, warts and all.

Love and support has also come in the shape  of the internet, other IBCers and other Breast Cancer survivors that I am friends with through the IBC mailing list, our IBC facebook group, other Breast Cancer bloggers, Facebook and twitter users.  Through all these avenues we become real friends as close as any real life support group as we share such intense shared experiences. 

As Shelli of “The Dirty Pink Underbelly” blog wrote as a comment on ‘Feeling the Fear’ on “Get Out Gertrude” “:-”I wonder if it brings me permanently down, further and further down, as my search for support has turned to seeing friends die. “  We run the risk, especially amongst those of us that are metastatic, of seeing these friends die.

But as Judy of “Just Enjoy Him” commented, when I crossposted the same post to “Mothers with Cancer” , about the loss of Sarah to our community:- “I am so very sad about Sarah’s death. Just so so sad. But I’m glad she was in my (online) life for the time that she was”. 

I totally agree with Judy. I would rather have these women in my life for a short time than not at all.  Having IBC and/or metastatic cancer can be a lonely experience, even if you are surrounded by friends and family that love you, because of the enormity of your situation, and that these other women understand.

Feeling the fear

this post is cross-posted from Get Out Gertrude by Jenny (jaydub26)

This post is dedicated to my friend Sarah who blogged with me on Mothers with Cancer, who died today.

We got to know each other through each other’s blogs and like me she was a bit of a twitter addict and we were also facebook friends.  Even though we never met (she lived in America – I live in New Zealand ) , through all these avenues she became part of my every day life – a real friend, and I will miss her.

 I had planned and written  this post in my head  already but with Sarah’s death, it makes it all the more real.

One of the reasons I don’t write more about advocating for change, education, research, a cure is because it requires me to quote facts and figures – statistics that in my every day life I try really hard not to think about. 

Sarah had metastatic breast cancer

The American bloggers I follow that went to the NBCC  advocacy conference  were given a presentation that gave some facts around that -

From The Cancer Culture Chronicles : In America 30% of people receiving a breast cancer diagnosis are known to go on to develop metastatic disease and metastatic disease accounts for 90% of breast cancer mortality with around 40,000 deaths a year

from Uneasy Pink came a link to a video presentation they were given  (click on the link – I dont have the capability to embed video in my blog) that states in 1991 (in America) the deaths from breast cancer were on average 117 a day , today it still averages 110  ( I would imagine that adjusted and worked out on a per capita basis New Zealand deaths from Breast Cancer would be about the same).

 That is 110 ‘Sarah’s (somebody’s wife, mother, sister or friend ) dying every day from metastatic breast cancer.

My friends Susan at Toddler Planet and Elizabeth at The Liberation of Persephone both IBC survivors like me, also wrote about these statistics and how we needed to change the conversation from awareness to really finding a cure.

Especially around IBC those facts and figures are even worse.  In a recent article Dr Christofanilli, one of the leading experts on Inflammatory Breast Cancer said “most women in whom IBC is diagnosed eventually experience a recurrence and die from the disease—highlighting the need for further research.”(approximately 75%),  and “is the survival of women with IBC in the 21st century similar to that of women with LABC? In a retrospective review of women in the Surveillance, Epidemiology and End Results (SEER) registry, our group has recently shown that women with IBC who were treated between 2004 and 2007 in settings where a multidisciplinary disciplinary approach to treatment is considered standard of care, continue to have poorer survival outcomes when compared with women with non-IBC LABC”

Well the statistics pretty much suck, don’t they, for those of us with  IBC!!  We are living longer with newer targetted therapies  (5 year survival now 40%) but once we are metastatic that is based on  a control rather than cure model. At the moment we will, almost 90% of us of we that get metastases, eventually die of metastatic disease.

I live with the fear everyday that ‘the cure’ will not be found soon enough for me.  But I try not to let myself feel it – if I let myself feel that fear, I would not be able to function in my everyday life.  Be the wife, mother, student, friend that I want to be.

But sometimes I have to let myself feel it and face my own mortality. One of my friends sent me a song via email last week that made me feel sentimental and weepy for the first time since I found out about my liver. The song and the sentiment weren’t anything to do with my cancer but allowing myself to cry over it opened the flood gates and allowed me to be open to feeling the fear and other feelings I had been trying hard to suppress.  That song and two others were on my playlist a lot last Thursday and Friday and as I said to my cancer society counselor yesterday  I actually really liked the way it happened and I thought it was a good cathartic release and much more controlled than if I had let it build up longer.  It wasn’t like I let myself bawl my eyes out uncontrollably. I just let myself think about things and feel things and let the tears fall if they came.  I felt I was in a really good head space afterwards for letting it out. 

I have two songs I listen to when I want to allow myself to connect to those emotions. One is ‘The show must go on’ by Queen and the other while I am not a huge fan of country music is ‘ Live like you were dying’ By Tim McGraw  – both of them are about facing your own mortality and dealing with it, living the best life you can or living your life your way until the end.  Which is what I will try to do.

Don’t get me wrong, I don’t sit around thinking I am going to die anytime soon, but I just acknowledge what is the most likely scenario for my death.  That I will in most probability not live to be an old lady. 

Today I cried again, for Sarah, who lived her life - loving it, finding the joy in the photos she took, her dog Finny (of who she tweeted many pics), her three children and her husband.  Loved your spirit Sarah and hope I can handle things with as much grace and hope and love as you did.

Edited to include what Laurie pointed out in her comment below: it should be clarified that Sarah didn’t have IBC. Her cancer was, however, triple negative, which suffers from the same lack of awareness and lack of research funding as IBC and is (like IBC) also more likely to become metastatic than other forms of breast cancer.

we are all terminal (by Judy)

I have Stage IV Inflammatory Breast Cancer. For new readers, I was first diagnosed in late Dec. 2007/early Jan. 2008. I went into remission in Dec. 2008, and found out I had a recurrence of the cancer in Nov. 2010. I’ve been back in once/week treatment since early Nov. 2010.

I’m also a mom. I have a nine year old THRIVING son who we adopted from Vietnam when he was four months old.

Is this what I would have chosen for us, me with cancer? No, of course not. But life can change on a dime, and when I received that diagnosis of Stage IV cancer, I was understandably devastated.

My son is a bright, imaginative, loving boy. Has he been affected by my cancer? Of course. Any child with a parent who’s ill in any way will be affected by it. Am I a worse mother because of it? No, not at all. In fact, in some ways I might be a better mother because I know how fragile life really is and I truly enjoy and cherish our times together. I try to make memories for him because the truth is that I really don’t know how long I’ll have on this earth.

But, you know what? None of us do. Nobody knows if a heart attack will come and steal his/her life, if cancer will be diagnosed, if a stroke will happen, if he/she will get in some fatal accident. Life itself is a terminal condition. It’s just that those of us with terminal conditions probably understand that more than most people.

I was and am outraged by Alaina Giordano’s story: she’s a woman who has had Stage IV breast cancer for 4 years. She and her husband filed for divorce in Aug. 2010, and he filed for sole custody. He won, partly because Alaina has Stage IV breast cancer and the judge, a woman, said that:

she is uncomfortable not knowing when [Alaina] will die

You know what? I don’t know when I’ll die, but that doesn’t make me a worse mother. My son isn’t suffering unduly from my cancer. It’s simply a part of our lives now, and if he’s learned anything from this, they are positive lessons. He’s learned that we need to reach out to others to get through this, for practical things (babysitting when I felt too sick to watch him, meals, people getting our groceries for us) and for emotional support. He’s learned that a strong faith in God and an amazing church family helps get us through this. He’s learned that we rely on others for practical and emotional support, whether those others are family members, friends, or church family.

Energy Boy and I are close, very close. He and Absent Minded Professor are close too. It breaks my heart to think that I might be taken from him before I’m ready, before he’s ready. But it would break my heart even more if he were, in essence, taken from me due to a custody battle while I was still living and could be a positive influence in his life, could raise him into the man he can be. You know what would be worse, though? How it would affect him.

Now, as an adoptee, Energy Boy would probably be affected a bit more than biological children would be, but any child would be affected by being taken away from a loving, caring mother. Alaina Giordano was not ruled an unfit mother; she’s simply a mother who happens to have Stage IV breast cancer, something that I’m sure she wouldn’t have chosen for herself.

But it happened to her. It happened to me. It could happen to anyone; nobody is immune from life’s tragedies, illnesses, difficulties. NO ONE.

Alaina is writing about her situation in a blog titled Beauty in Truth. Read it. Support her. Sign the petition that she should have custody of her children. Like the Facebook page, Alaina Giordano Should Not Lose Her Kids Because She Has Breast Cancer.

You wouldn’t want that happening to you, would you? Alaina needs our support. Please help.

For Alaina, but also for her children.
___________________________________________________

Cross-posted to Just Enjoy Him.

Judy’s platitudes (by Judy)

Yes, I know, I hate platitudes. I do. But I have learned some things through my two experiences with Stage IV Inflammatory Breast Cancer to know that some things are true for at least most people. As always, Your Mileage May Vary.

1. You’re stronger than you know or ever imagined. People ask me how I get through this, and the answer really is: I have no other choice. I can either crumble (and I do sometimes, but I’ve always been able to go forward again) or I can accept this as a part of my life and find happiness wherever I can.

2. Faith is a beautiful thing. The times when I’ve felt closest to God are the times when I’ve had the easiest time with all of this. God really is with me all the time; it’s just that I don’t always accept or acknowledge it, or my anger against God is so fierce that I harden my heart against Him. He always finds a way through, though — sometimes through the grace of other people — and when that happens, miracles happen, even if they’re small miracles. I thank God for being with me through all of my troubles.

3. Despite everything, life is beautiful. The sun is shining today, I have a wonderful family, I have amazing friends and a tremendous church family. I have many blessings in my life, even though I do have a sucky disease. The blessings in my life are part of what gives me strength.

4. People can and will surprise you, both in good and bad ways. I try not to judge them for that anymore because, as some smart people have told me, “Wounded people wound people.” I am finding that I have more and more compassion for those you would think I would be railing at.

5. Lean on friends, family members, church family. Lean on people. Let them know when you’re hurting. Many times, even just telling others your problems releases burdens that you may have.

Friendship makes prosperity more shining and lessens adversity by dividing and sharing it.
~ Cicero

6. Related to number 2: God is great and can get you through anything. Also, miracles can happen. Never forget that.

7. If you’re not feeling well physically, it’s difficult to feel well emotionally. I often forget that when I’m not feeling well physically. If I would remember that, I think things would be easier for me at those times.

8. A prognosis is simply a history of what has happened to people before you who have gone through the same or a similar diagnosis. Prognoses are not set in stone. You may be the small percentage that lives way beyond a prognosis. My way of dealing with the prognoses that I got the first time I went through this? — honestly, I try to ignore them.

9. Keep the faith, and keep your hope. They are both beautiful things and will help you in the difficult days of your illness or whatever burden you are carrying.

______________________________________________________

Cross-posted to Just Enjoy Him.

big words, acronyms, and an amazing God (by Judy)

Sometimes I think I live my life lately with big words and acronyms:

- metastatic/metastasis
- inflammatory
- INR
– CBC
- navelbine
- herceptin
- coumadin (or warfarin)

etc. . . . .

It can make one very weary.

*sigh*

So how does one cope?

People who are living with a terminal illness cope in different ways. I’ve realized lately that, while I know about my disease and the facts about it, I do better if I don’t read or research about it too much. I guess I’m a head-in-the-sand coper, someone who needs to shut it out of her mind . . . as much as that’s possible anyways.

My faith helps me a great deal. My church family prays for me, family and friends pray for me, and of course I pray for myself. I believe in the power of prayer, and I also believe that so much of my illness is out of my hands. I want to live a long time, but I don’t know if that will happen. On the other hand, it might happen. I simply don’t know, and I put my faith in God. It’s then that I cope the best, when I put my faith in God and lean on people who believe in me and are pulling for me.

This past weekend I went to the Women of Faith conference in Columbus with six women from my church. It was an amazing, uplifting two days. One of the speakers was Angie Smith whose story can be found at the blog Bring the Rain. In short, she and her husband were expecting their fourth child, another girl, and found out during her pregnancy that their future daughter had severe health problems and wouldn’t be able to live outside the womb. That daughter, Audrey Caroline, lived two hours after she was born. I tell you, there wasn’t a dry eye in the auditorium when Angie told her story. At any rate, she ended with a statement that I don’t think I’ll ever forget:

I have a hard story, but I have an amazing God.

I related. Not in the same way as Angie or other women who had experienced the same or a similar loss could relate. But that statement resonated with me:

I have a hard story, but I have an amazing God.

So true, so very true. I do have a hard story . . . . but I also have the same amazing God.

And He gets me through the days . . . when I let him.

Readers . . . I have a hard story, but I have an amazing God.

And when I realize that, when I can live that, I know that no matter what happens, I’ll be OK.

__________________________________________________________

Cross-posted to Just Enjoy Him.