Milestones by imstell

October 27, 2011

Hey, Everyone!  It’s been a while since I’ve logged on here.  That’s good news because if I was having active cancer issues I’d be on here daily. 

So, I’m here today to share some great news.  Last week I hit my 5 Year Survivor mark!  What a milestone!  I do feel blessed to be here, in this place, standing in the sunlight of cancer-freedom!  The odds were against me being here.  Inflammatory Breast Cancer (IBC) is not a kind and gentle cancer.  The odds moving forward aren’t really much better but I’m confident in my ability to survive again! 

Five years ago I was given a 90% lifetime risk of recurrence.  I don’t think that has really changed after 5 years (but I’ll be sure to asked my Oncologist when I see her next!).  Unlike other breast cancers where recurrence drops dramatically after the 5 year mark (75% of recurrence occurs in those first 5 years), IBC does not.  Depending on which study you read, the overall percentage of women who reach 5 years  survival is somewhere between 52% and 56%.  That is not necessarily Disease Free Survival (DSF) like mine.  These figures include people like our own WhyMommy who are living with metastatic disease (Metavivors), but living nonetheless.  Still, in the not-so-distant past women with IBC survived only an average of 18 months after diagnosis.  We’ve come a long way, Baby! 

Yet there is still so far to go…  Survival rates for Inflammatory Breast Cancer at 5 years is roughly 54% (I’ll split the difference in the studies).  10 year survival rates are 35% and drops to 28% at 15 years.  Staggering!  Only 28 of every 100 Inflammatory Breast Cancer patients will live 15 years beyond their diagnosis.  These are horrible figures for a young woman’s disease! 

On to better news…  I celebrated my AWESOME MILESTONE with a big party and a tattoo to commemorate!

Don't ask me why it says "in" counting...

Survival Tattoo

The pink ribboned butterfly represents my metamorphosis from cancer patient to cancer survivor.  The dandelion holds the wishes for my cancer sisters’ complete recoveries.  The floating dandelion seeds are for each of my years of survival (there are supposed to be 5 but I need it touched up).  The white (pearl) bird is for my Grammy who recently died of lung cancer.  The fuchsia one is for Andrea (Punk Rock Mommy) – my first IBC loss.  And the pink bird is for Sarah of Sprucehill whose passing hit me so very hard.  I hope to add many, many more floating seeds over the years and no more birds.  Ever. 

More news:  I’ve added a link on the HELP page for a Care Calendar.  My gf is using it for meal sign ups.  It’s easy peasy and it’s FREE! 

Cross-posted to I Can’t Complain Any More Than Usual

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When your children are far away

October 2, 2010

I actually planned this to be my first post on ‘Mothers with Cancer’ but ended up writing about ‘Pink October’.

On the 4th of September 2010 a 7.1 earthquake shook things up in the South Island of New Zealand. 

What does this have to do with ‘Mothers with Cancer’?  I am a IBC survivor and I live in Auckland, towards the top of  the North Island of New Zealand.  MD (my middle daughter) ,22 years old, lives at the army camp just outside Christchurch with her fiance who’s in the army (she is training to be a teacher) She lives near the epicentre (these pictures from my personal blog are of the aftershocks surrounding her on the 4th and the 5th of September).  We got woken by a phone call just after it happened.  They were fine but a little ‘shaken’ emotionally.  But this event really hit home for both of us how far away she lives from us about 1600kms (1000 miles) and seperate islands.  My first instinct was to jump on  a plane to go down there or get them on a plane up here.   Both she and SB had commitments down there so them leaving wasn’t an option.  MD and I kept in touch talking several times a day but it did effect me emotionally not being able to physically give her a hug.  

We ended up having quite an interesting discussion towards the end of the first week of aftershocks (they are still happening 4 weeks after the event)  about the fact that as much as both of our first reactions had been to want to be together, I had brought her up well enough to be able to stand on her own two feet emotionally without me physically holding her hand.  these events have made it  even more evident that mothering doesn’t stop when you have no children living at home.  No matter how old they are, I am still a mother to my girls.

She shared that when she tells new friends she has made down there about my cancer and the fact that I have had a recurrence since she moved down in July 2009 when  I was in remission from the initial diagnosis – and that when the earthquake happened we were awaiting results from an echocardiogram, CT of chest, abdomen and pelvis, and MRI of my brain to investigate ‘niggles’  – all clear thank goodness! – their reaction has been one of ” Why on earth did you move down here when your mum is going through all that?” 

When I first got diagnosed with Inflammatory Breast Cancer and found out how aggressive and potentially life- threatening it is I very quickly came to the decision that I didnt want my older girls to put their lives on hold for me.  At that stage they were both in University study and I told them I didn’t want them taking time off their studies, but even more than that I didnt want them to change there dreams and plans for their lives.  As much as I hope to be alive to see them get married and have children I dont want them to fast track anything just because of me.  Them living their lives and dreams just the way they want to will ultimately make me the happiest.  Its hard sometimes but we all agree with it. 

We did the Dove Pink Star Walk last night and I know MD was disappointed not to be part of the ‘Get Out Gertrude’ team.  She is flying up next weekend to spend sometime with us to celebrate her 23rd birthday and has volunteered to help me out on the Friday at the Pink Ribbon Day street appeal so she feels like she is involved somehow, that she has done something to support me.


Pink October

October 2, 2010

I wrote this as a comment on another blog but thought I would reiterate my stand on “Pink October” here

” I dont like the over commercialisation of breast cancer awareness but I have noticed that the New Zealand Breast Cancer Foundation is moving away from calling it awareness and have called this ‘Breast Cancer Action Month’  and are targetting raising money to support women with breast cancer and research for a cure and awareness. That is something I can get more behind. As an Inflammatory Breast Cancer survivor (IBC) fighter/survivor: first diagnosed Aug 2008 remission April 2009, regional recurrence October 2009, and back to remission May 2010, I will wear my ‘ no they’re not real t-shirt – the real ones tried to kill me’ or other similar survivor shirts and go to events to raise awareness of IBC in particular. I will also wear my shirts to my university course, and talk to people about my fight – A) to remind them that behind all the pinkness there are real people fighting the disease and B) to educate people that you can get breast cancer that doesn’t show up on mammograms and can develop without a lump as IBC is relatively unknown here in New Zealand. I sure didn’t know it existed til I got it.”

To reiterate, when I got diagnosed there was no lump in my breast – just threads all through my breast and the nodes in my armpit and above my collarbone were involved . The only warning I got was an itchy breast 2 weeks before my breast blew up with the course of a day (it looked fine in the morning) to be big red and funny looking very similar to the second picture on this page except even redder and more puffy looking. I had a slight ache a couple of days before but had put it down to being ‘that time of the month’. I was stage IIIc at diagnosis which is the closest you can be to metastatic without being Stage IV and I could not have got diagnosed any sooner than I did – unlike a slow growing lump IBC is fast growing and undetectable until you get the physical appearance of symptoms. No lump , Doesn’t show up on mammograms, still Breast Cancer!!


IBC in the news

September 1, 2008

I just ran across this video.  It is an extremely informative news story on Inflammatory Breast Cancer!  Complete with visuals.  Everyone should watch it!

My breast did not look nearly as horrible as the one in the video.  It’s important that women know what IBC looks like.  Soon we will have a place here for pictures.

Share it with the women you love today.


She has changed my life

July 19, 2008

The She in this story is a many-faceted being. She is the Blogosphere, BabyCenter’s Bulletin Board posters and the greater internet family of lurkers.

From the Internet’s inception (thank you Al Gore? Ha!) I have been infatuated. I knew she was the best thing since sliced bread. I knew I would never be lonely or bored or lack for information again. I was it’s her biggest promoter amongst the older women I worked with who couldn’t see it’s usefulness. “You want to know who was in that movie? Why let me look it up on the internet for you.” Click, click, click, click. “It was Lorne Greene. Anything else you need to know?”

In February 2004, however, our casual relationship became serious. I was 6 weeks into my third pregnancy (#2 ended in miscarriage at 11 weeks) when my fallopian tube ruptured as I drove myself to the ER. It had been an ectopic pregnancy. I was devastated. Not only had I lost a second child but at 38 years old I had also lost one of my fallopian tubes and half my chances of conceiving. I was not in any high risk groups so I was also confused. I turned to the internet looking for answers.

I stumbled across BabyCenter’s Bulletin Boards doing a simple search. I lurked a bit reading other women’s experiences that sounded so much like mine. I read the caring, thoughtful responses and knew it would be safe to ask my questions there. That was the beginning of a relationship with a group of women that still exists today. They supported me and comforted me through negative pregnancy tests, charting my cycles and lamenting my advancing age. We cheered each positive pregnancy test and cried for each loss. I met my best friend, C, on that board. We talked on the phone daily for 2 years before we ever met in person. Daddy-O used to call her my imaginary friend.

In fact, C was the second person I officially told about my cancer diagnosis. I felt bad for it too because her best friend had died of the exact same disease (Inflammatory Breast Cancer) just a few years before. All of this, my diagnosis, etc., was before we had even met. She cried with me. She researched with me. She talked me down from panic when I tried to read my own CT Scans in my car on the side of the road. No real, “flesh and bones” friend could do any more than that.

I continued to post with my BabyCenter buddies through my cancer treatment. It wasn’t until I was back to work that I discovered blogging. By then all my BC friends had had their kids, as had I. Most of them were SAHMs, though, and I was back to work. It was a little harder to connect. C, sent me a link to a blog post my Amalah that was hilarious. From there I clicked on links in her blogroll. Soon I was clicking my way through the Blogosphere meeting the most amazing women. They were witty, intelligent mothers with things to say. Their lives became the highlight of my day.

Soon, I decided to start my own blog. I’ve never told anyone this before. My friends and family probably think I started a blog because I like to hear myself talk or can’t stand not to be in on a trend. The honest truth, though, is that I was looking to the future. I thought it would be a great place for everyone to be able to check on my condition when my cancer metastasized. Ha! How’s that for borrowing trouble? Of course my attitude has changed a bit over the last year or so. Now I say, “Just call me 10%, Baby!!!”

Through my blog, I met Susan from Toddler Planet, and Judy from JustEnjoyHim and from Toddler Planet so many others. I made a point to make myself available for questions and answers when Susan was going through chemo. I wanted someone to benefit from what I’d already been through. Inflammatory Breast Cancer is so rare there are no other cases in my immediate area. I tried to do the same with Judy. And Sarah from Spruce Hill. By that time, however, I was getting really busy at work and at home. It was getting really hard to keep up with all the individual blogs.

I really felt the loss. I was missing out on so much. Things were happening in the lives of these women, they were sharing important medical information and research they had found or been given, they were increasing awareness for IBC and I was out of the loop.

There is so much information in the internet’s vast resources, which cross borders and domains, one surfer cannot possible hope to access it all. But a network of bloggers with a common quest, sharing knowledge gleaned from her myriad sites, can increase their understanding exponentially. More importantly, That same network will expand that insight to their readers and so on and so on. Wasn’t there a commercial like that once?

I could go on and on. I could talk more about my son’s rare genetic condition, Norrie’s Disease, that caused his blindness. It is so rare that most eye doctors have only maybe heard of it. His specialist treats kids from the entire western half of the US & Canada. Through the wonderful, wonderful internet I am in contact with specialists, parents and adults with the disease through another bulletin board and Family Connect. In another time I would have no information about Norrie’s. I would have no glimpse into D’s future. I would not benefit from the experiences of parents who have come before me.

Oh, she has changed my life, alright. The internet has given me friends and family, information and peace of mind, strength and hope. I want to share it with everyone! That’s what the internet is all about. That’s what Mothers With Cancer is all about.


Ask me no questions, I’ll tell you no lies

July 16, 2008

Today was my seventh 3-month follow-up oncology appointment. For those of you who don’t feel like doing the math this late in the day, that’s 21 months post-treatment. 21 months No Evidence of Disease (NED). 21 months of living life. Of course, there is always bad with the good. It was also 21 months of waiting for that other shoe to drop. 21 months of worry. 21 months of mental Do Before I Die lists and At My Funeral Memorial Service lists.

I did get a clean bill of health today. My blood work was all normal. My lymph nodes were all fine. I have no bone pain, pulmonary issues nor headaches beyond the norm. In short, I rock Survivorship! Knock wood.

This 3-month appointment was different than the others, however. This time, I asked questions. This time I wanted more than a checkup. I wanted information too.

I’ve already shared that I purposely avoided IBC information while I was undergoing treatment and why (read all about it in my memoirs, Why bad Focal Points Happen To Good People) also that I don’t have a great track record with asking my doctor cancer questions. The last time I worked up the gumption to ask a scary question I DID NOT like the answer. Can you say 90% recurrence risk?

So I started small, with the nurse who took my blood pressure when I asked her to make copies of my pathology reports. I’ve somehow lost them over the last 2 years. (Besides, amazingly enough, the details were fading and I was no longer sure I had my facts straight.) Wow. She came right back with them. She didn’t even tell me I would need to pay a small fee for copies like the old office. So far so good.

When Dr. Villa came in we hugged and I showed her the new pictures of the boys. Then I told her all about this site and how excited I am about it. She asked for flyers or cards – which I have not made yet. My bad. Then we got down to business. Thanks to posting here I’ve developed the courage to ask the questions I’ve been wanting to ask for a long time.

I asked her about the original statistics she had given me about recurrence. She had told me most recurrence occurs at 2 and 5 years. And I’m coming up on the 2 year mark. She said that she had forgotten that I was triple negative when she had given me those numbers. The figures for triple negative breast cancer are more like 12 to 18 months. But I am beyond that. And that is very, very good. Perhaps, she says, you’ve fallen into that niche of ones who sneak through.

More good news. This was working out better than I’d hoped. So I asked about the infamous Cancer 5 Year Mark. “Does that hold true for Inflammatory Breast Cancer also?”

“I’m going to say ‘yes’,” she said. Yes? Yes! Yowza! Something to work towards!

And I asked about preventive clinical trials that I may qualify for. There are none at the moment. It’s nice to know she’s keeping her eyes open for me. I’ve wondered about that for a while now. She did mention two new bits of research that she wants to keep in mind for me.

We will check my Vitamin D level with my next blood work. Studies have shown that breast cancer patients who are deficient in Vitamin D have almost double the chance of a recurrence or spread over 10 years time and are 73% (!) more likely to die. Holy cow!!! It’s not about drinking milk. It’s about getting 15 minutes in the sunshine without sunscreen daily. Do it! 73% is too huge a risk not to.

She’s also closely watching Avastin for it’s benefits in preventing recurrence.

I had read about both when they came out so it’s nice to know I’m keeping up well enough on my own.

I want to send a big Thank You to every one of the women here at Mothers With Cancer. The sisterhood that is forming before my eyes is already having its effects. Empowerment. Strength. And this is only the beginning.

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Toward that end, I would like to direct you all to the Discuss tab at the top of the page. There is a link to a discussion board there. It is just beginning to take a foothold. Only through participation will it grow strong and become a community, a resource, a source of knowledge. Please take the time to register and introduce yourself on the Introduction topic.

If you have any burning questions or topics of interest feel free to start a new topic.

Stella