Milestones by imstell

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

The Real Face of Breast Cancer

By Lorri Steer, reprinted from my personal blog, originally published 10/2/08

As Breast Cancer Survivors, we have a love/hate relationship with the month of October. Everywhere you turn from the grocery store to the local Mexican restaurant that is serving “Mar-Cure-ritas”, you are reminded that the color pink equals breast cancer…breast cancer that is, or a really emotional exploitation for marketing and sales purposes. Some of the more militant groups of survivors have their own slogan: “F&%# Awareness, Find a Cure.” These aren’t just vigilantes, these are mother who will not live to see their children grow up. These are woman whose marriages failed over the stress and damage of the disease. These are woman who live with the life-altering side effects of cancer treatment and metastases such as chronic pain, heart damage, and even blindness.

Some companies do what they say: raise money for breast cancer research or survivor support. Others prey on people’s sympathy for cancer and color things pink to make more sales with very little of the actual profits going toward actual cancer research or support.

I mean, I’m all for buying pink stuff…I have a pink mixing spoon, a pink rubber ducky that lights up, I had the breast cancer issue designer nail polish last year, and just yesterday, I picked up a pink-lidded jar of pickles. Those are good pickles but I really have no idea what portion of my $4.59 is going toward finding a cure.
Some of the Pink Products are oxymoronical. It is a known fact that cancer feeds off of simple sugar…that’s why you are injected with radioactive glucose before a PET scan: the cancer grabs up that fast energy and then lights up on the scan. So “Pink” products like ice cream, cookies and candy contribute to the disease they are trying to raise money to cure. See the issue? What would make sense would be for anti-cancer items – such as broccoli, real green tea and the like – to bear the pink ribbon. But I suspect it’s going to be a cold day in Hell before we see the broccoli growers of America binding their vegetables with pink satin ribbons. I did see Pink Packaged pre-cut lettuce so that’s a start, I must admit.

Yes, we as survivors are happy that breast cancer gets the recognition and funding that it does. You’ve probably never seen a ribbon for anal cancer, or brain cancer, or throat cancer. Pancreatic cancer has something like 6 researchers in America working on a cure while breast cancer has hundreds. Somehow our culture has a love affair with the breast and pink just wraps it up all warm and cozy like a newborn baby. We see the statistics given to the public and we think breast cancer isn’t a deadly disease. Oprah said the other day that 81% of breast cancer victims survive the disease. But it’s not that simple.

Breast cancer is the leading cause of cancer death in women ages 15 to 54 in America. Breast cancer in young women is usually of a more fatal form than its counterpart in older women. Young African-American and Latinas have an even higher mortality rate than their Caucasian sisters. We all know that different types and stages of breast cancer have different outcomes but here are some more facts: 80% of stage 4 breast cancer patients will die in 5 years or less. There is no cure for cancer: even women whose disease is “caught early” can go on to have a recurrence or spread into other organs. Yes, many women go on after cancer treatment to live long and healthy lives but that doesn’t mean there should be a Breast Cancer Barbie with a pink ribbon over her perfect bust line like a contest winner. As one survivor of early stage disease said, “There’s no prize for being stage one.”

It’s suitable that October actually is Breast Cancer Awareness month. October is also Halloween. The stores are filled with all manner for scary, creepy ghoulish figures and masks. Yesterday, I saw a small red trollish looking devil doll. When you pressed its stomach its red eyes lit up and it made a demonic screaming sound. One kind of chemo treatment is nicknamed, “The Red Devil.” The young women on the cancer board call cancer “The Beast.” This ugly devil doll would actually be a much more suitable mascot for breast cancer. Please don’t fall for the deception of the soft pink wrappings: breast cancer is a cruel, damaging, and often fatal disease. When you are shopping and see those pink items out there, go ahead and purchase some if you want to, but remember the real face of cancer isn’t a beautiful smiling Barbie…it is a red-eyed ugly beast that has yet to be slain.

What you can do to make a difference:

http://www.thinkbeforeyoupink.org
http://www.armyofwomen.org

The 10Th Annual Conference For Young Woman Affected By Breast Cancer by Sarah

Well I made it home. No plane crash or traumatic incident! After not flying for 13 years I was a bit worked up about traveling. Thank goodness for anxiety meds. All aspects of my traveling experience went smoothly (with the exception of an overlooked bottle of cranberry juice in my purse, oops)

The 10Th Annual Conference For Young Women Affected By Breast Cancer was so much fun, I even met two survivors on my plane ride down to Atlanta. We were all in the same row! It was so cool.  I went down a day early and was able to spend time with two of my Hubby’s Sisters. We had a nice girl time. I don’t often get to visit with them without 12 kids running around. 

They kept us very busy at the conference. We had lots of time to network and I met so many wonderful inspiring young women who face the same things I do everyday. Some of us were post treatment and some still in treatment proudly wearing their wigs, hats and scarves. All with bright eyes and beautiful smiles. One of the things I was really looking forward to was meeting some folks I had never met in person. One of the ladies from Mothers With Cancer was there all the way from Canada.  I love Laurie’s writing and I have also read her book Not Done Yet. It is about her journey through cancer diagnosis and treatment. It is a great read and I highly recommend it even if you are not a woman facing breast cancer. I wish I had more time to talk and hang out with her. She is such a great person and I am inspired by her. The first time I saw her she happened to be raising her hand in a lymphedema workshop a few rows back from me. I knew it was her the moment I turned around. When we had a short break I went right over to her and introduced myself to her. She is as wonderful as I thought she was. We found a little time to chat here and there, and I am so happy that I got to meet her face to face.

There were some really good speakers at the conference. Dr Julie Gralow, professor of Medical oncology at the university of Washington school of medicine, Julia H. Rowland PhD from The National Cancer institute, and Congresswoman Debbie Wasserman Schultz. They were very informative speakers and I enjoyed listening to all of these woman speak about cancer and survivorship.

I was able to go to several workshops. I chose workshops on lymphedema, triple negative breast cancer, both of which I found very informative. I was very encouraged to hear about some new drugs that are about to come out that will target triple negative breast cancer. Us triple negative cancer patients do not have any target treatments like most woman do that have hormone receptive cancer or that are HER2+. This is wonderful news for triple negative breast cancer patients. I learned so much new information that I did not know before. One quote I heard during the conference was “Cancer happens to a person not a body part” Sometimes some of us feel like our bodies are treated but our whole person is not treated.

We also had some fun at the conference. I was lucky enough to be traveling with 4 other woman from my support group. We had so much fun hanging out and just having fun. We had lots of opportunities to let loose a bit and have a great time, laughing a just goofing off.

There are so many good things I carried away from the conference. But, best of all was the friendships and camaraderie between breast cancer survivors. There is always a conversation to be had between two breast cancer survivors. We all have our own cancer stories and our own treatment issues that we go through. It was a wonderful feeling to be surrounded by woman that knew about where I have been on my journey through cancer. It’s something that is very hard to put into words, but we all get it. There is always a nod and a Yes! Sometimes we feel alone with our disease, but we all have a very strong common bond. It’s a sisterhood of sorts. I felt bonded with complete strangers I had never met before. I am so glad that I was able to attend this years conference and I am looking forward to going again next year.

2 years and counting

Yesterday was my 2nd anniversary of the end of chemotherapy. I’ve had 668 days on this Earth since my cancer diagnosis. Each and every one of those days has been a gift and a blessing. Even the ones when Danny made ungodly messes on the floor. And the ones that required extra parental patience. And especially the ones where God’s presence was paraded in front of me like a slide show of perfection.

I can’t imagine not having spent these last 668 days with my kids and Daddy-O. And I am blessed to be spending the last few months with you. That being said, I’m finally beginning to lose that waiting for the other shoe to drop feeling. I’m starting to feel like I just might stick around for a while.

My mom and I were talking about just that topic this morning on my way to work. About how neither of us ever really worried about ourselves while undergoing treatment. All our resources were utilized worrying about our children – me with Ben and Danny; she with me.

Isn’t it odd that neither of us worried about our own mortality? Today is the first we’ve spoke on this particular topic, yet we have matching views. I know from my dad’s death when I was 14 that dying is the easy part. Being left behind is where all the hard work is. I guess we both figured we’d be pretty good at dying so there was nothing to worry about there. Ha! Who ever thought “dying well” would be a necessary skill set?

However, my new goal is “living well”. It looks much better on a resume, anyway.

“I Feel Good” (cue James Brown)

I wasn’t a blogger when I had cancer. Mostly I think that’s a bad thing. It would have been interesting to read back over my posts from those first days after diagnosis – to hear the shell-shock in my words. Or those days of chemo and radiation and pure exhaustion. But other days, I feel that it’s all for the best to have those memories locked up inside me in a place that only I will ever see. Overall I am an extremely positive person, but there were some fairly desolate hours during treatment.

All of that only makes me more aware of how far I’ve come. How good things are these days.

I have always had a strong constitution yet the year or so before my cancer diagnosis (when I was pregnant with Danny) I was plagued by irritating physical issues. I wasn’t sick, per se. I was, however, very “run down”. I developed a cough that wouldn’t go away and eventually made it so difficult to catch my breath that I found myself spending New Years Day 2005 in the Emergency Room. This was not my first trip there either. I’d been twice before for the same thing. I would just cough to the point of (wetting myself) and not being able to get any oxygen. The very act of talking was almost more than I could handle at times. Those of you who know me understand how torturous that was. The long and short of it was Cough Variant (Bronchial) Asthma irritated by my pregnancy. Those were bleak days. Hey… maybe that’s why chemo wasn’t so difficult for me. At least I could breath.

So… the point I’m trying to make is this…

Here it is, our End of Fiscal Year at work, and I’ve been working my tail off. I worked 58 hours last week and 56 the week before (including weekends). I go home and have visitation with my boys (that’s what it feels like these days), order in some dinner and collapse on the couch until everyone under 4′ tall is asleep and I can finally go to bed myself. Then it all starts over again the next day. And yet, I feel wonderful. Exhilarated. Tired, to be sure, but good.

I can breathe. That’s always a great thing. I’m not so short tempered as to be a shrieking harridan with my husband and kids. Shamefully, this has not always been the case in the past. And I have enough energy to go to and enjoy Ben’s soccer games, surf the internet and manage my fantasy football team.

It’s funny how we tend to lose sight of our blessings – like good health and abundant energy – in the midst of our work-a-day world. Those all important things that we take for granted until they are pulled from us. Today I am counting my blessings.

Side note: I just got a sad call from Daddy-O. All male members of my household are home sick today. Laid low by head colds.

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