Tuesday, April 27, 2010

And then, there are miracles...

Today is the one year anniversary of my stage II-b cancer diagnosis. The day after tomorrow I will go in for my very last chemo infusion.

Despite that auspicious ending I am still immersed in the treatment phase, with another segment to begin in about 5 weeks -- when they will begin chemically shutting down my ovaries every month and start giving me an estrogen suppressing drug, Armidex, a process replete with its own set of side effects. Assuming I tolerate it well, I will take that drug for many, many years to come.

Not to be a party-pooper, but it's hard to feel like celebrating and I have felt of late either chaotic or despondent....with occasional breaks of anger and numbness. But then this morning I came across this:

http://www.nytimes.com/2010/04/27/health/27case.html

It's a wonderful piece in The New York Times by a woman who has not just survived, but thrived for 17 years with Stage IV breast cancer. She posts yearly at the BreastCancer.Org message board on the anniversary of her diagnosis to let her other Stage IV sisters know that she is still here.

It goes to show you, as she said, you just don't know.

Tuesday, April 20, 2010

A pink bucket load of crap


I haven’t gotten up on my soapbox too often about breast cancer matters. It’s not that I don’t have a few choice things to say, it’s just that I’ve been a little consumed by my own personal journey at the moment. I figure there’s time for me to mouth off later ;)

But this recent development just got me so pissed I have to write about it.

The new ad campaign from Kentucky Fried Chicken (KFC), called “Buckets For The Cure” is such a glaring example of pink washing that at first I thought it was an SNL comedy skit. When I realized it was real, and that KFC has partnered with Susan G. Komen, a well-known name in breast cancer research, I was completely incensed and aghast. The fact that this also coincides with KFC's introduction of the "Double Down" -- a brand new deep-fried chicken, bacon & cheese concoction that reaches unparalleled heights in fat-laden debauchery, well, that just adds insult to injury.

To say there is a plethora of research out there linking obesity to breast cancer would be an understatement. Not to mention anyone with half a brain knows that consuming fast food on any kind of regular basis is a health hazard that contributes to the growing obesity problem. The absurdity that Komen would pair with KFC like this is simply outrageous.

Clearly money for research is paramount. No doubt I have personally benefited from breast cancer research since even just a mere five years ago a woman with my exact type of cancer mightn’t have had the same prognosis I have now. I’m a realist, I get it. But this is ridiculous – it’s going too far.

Here’s the truth – breast cancer isn’t one disease, it’s many. And there will be no real cures until the causes are found. We keep finding ways to beat the cancer once it’s there, and we keep finding ways to detect it earlier, but what we really NEED to do is find out why the rates are increasing so rapidly (early detection just doesn’t account for it).

Obesity is directly linked to breast cancer and the bitter pink irony is that Komen has supporting research showing that. Heck, I wouldn’t look a gift horse in the mouth, I’d probably take money from just about anyone if I thought it would mean my daughter might not get this despicable disease. But to be part of this money-making ad campaign, to in any way encourage more consumption of products that can be clearly linked to increasing breast cancer rates not only defeats the purpose, it is just downright stupid, irresponsible and utterly disrespectful of every single woman whose life has been touched by this disease – which is pretty much all of us since one in eight women will get breast cancer in their lifetime.

Shame on KFC. Shame on Susan G. Komen.

Do me a favor, kick the bucket and kick it hard. Don’t be a party to this shameful marketing campaign. That would be a better way to honor those of us battling this disease.

Thanks.

Saturday, April 17, 2010

Out of the mouths of babes

The day before yesterday Daniel hugged me tight and said he wished I would never die. Then he looked at me intently and asked me if I was going to die soon and stop talking, because, “…when you die you stop talking forever ever.” I told him that this was true, when you die you do stop talking. I asked him where he heard about dying and the answer wasn’t clear. Though we’ve had many conversations about cancer I don’t talk about my death to him as I think it would be confusing and beyond his age, not to mention totally unnecessary at this time. I’m all for openness with children, very much so in fact. But a 3yo doesn’t need to hear that this disease is capable of killing me, not that he could even grasp what that meant anyway.

He wasn’t upset in the least when we had this little exchange and as much as it could have been a bit poignant for me it was so out of the blue that I didn't have a chance to be taken aback. I suspect that although his description of death was pretty apt I don’t think his concept of “forever ever” is quite the same as an adults.

Now Megan is a completely different story -- she has a significant understanding of this saga, but she’s 8 ½ and obviously needs to. She knows that some women die of breast cancer and some survive, and that Mama is going to try and do everything she can to have a very long life. But I also wouldn't want to mislead her into thinking that once I'm done with treatment I'm cured and this can't ever come back -- so I have told her that this might be what I die from…eventually -- or it might be something else. Either way, it certainly won't be today and not for the near foreseeable future.

Meggie saw pictures of reconstructed breasts before my mastectomy in preparation. She watched with fascination as my visiting nurse change my bandages for months as I dealt with skin necrosis. She has seen me suffer physical pain, seen me cry, seen me deal with anxiety, and no doubt been aware of me sometimes feeling like I wanted to give up on my worst days. But more importantly she has also watched me get up, get dressed, put on my wig and go for treatment anyway. We have talked about everything along the way and any discussions have been at her comfort level. I must say, regarding my cancer journey she is incredibly astute beyond her years. I firmly believe that keeping children in the dark is a mistake – they need to know, in an age appropriate manner, what is going on. The unknown, the hidden, the secrets are what make children afraid. We grown-ups fool ourselves into thinking that we’ve managed to protect or shield our kids and we rarely do. As my grandmother used to say, “Little pitchers have big ears.”

Before I had Daniel there was a time when I dealt with some deep depression and acute anxiety in front of my daughter, it was impossible to hide it from her. Even in the midst of my emotional crisis her father and I managed to talk to her and explain to the best of our ability how I was feeling and what it was all about. She also saw me get through that only a little the worse for wear in the end. And I think it taught her something important. Sometimes when faced with certain challenges people fall apart – and that’s okay. Ultimately they heal, they move on. It’s a lesson I wish I’d known at a young age. I was always afraid that I would break, that each crisis or tragedy would be “the one”…the thing that destroyed me. Sometimes, very often lately, I admit I’m still afraid of that. But I try to remind myself that falling apart doesn’t negate strength and life rarely breaks anyone. We fumble through it and keep going.

And my Meg comforts me sometimes by reminding me of that past episode…wise little creature that she is. She says, “Remember how bad you thought that was, and yet it was okay, you learned to deal with it and things got better. Cancer is just like that, Mama, you’ll see. I know it.”

As for Daniel, I told him that I wasn’t going to die for a long, long time. He said, “Good. Can you fill my juice cup, pease?” And so I did. Because there are always juice cups to be filled. There are always little things that need doing and I’m their mother so I do them…not their mother with cancer…just their mother. And that is always a huge part of what gets me through.

Thursday, April 1, 2010

A year ago today...

...on April 1st, 2009 while touching my breast as I was about to nurse my son I felt a bean-sized lump. I tried not to worry, thought maybe it was something breastfeeding related, but knew I needed to get it checked right away. My primary care doc is less than a mile from my house so I decided to just show up first thing and get a script for a mammogram. As I sat at my dining room table the next morning waiting for her office to open I continued to absentmindedly feel my breast. It was then I found the other two lumps. I looked at my husband with sudden clarity and said, “I’m screwed.” It took 26 more days to get the diagnosis of invasive ductal carcinoma.

Since that day last year I have had a mastectomy and reconstruction, discovered the cancer spread ever so slightly to my lymph nodes and have gone through the wound healing process from Hell thanks to skin necrosis. I experienced an SVT after port placement, had almost a dozen chemo infusions and now have been diagnosed with lymphedema. To say this last year sucked more than any other year of my life would be the understatement of all time.

But I’m still here. My kids still have their mother.

That doesn't mean I am positive or grateful or even contemplative. That doesn't mean I haven't cried my eyes out a dozen times just this week alone. It just means that I know I have to hang on, there isn't any other alternative.

So today I will go to the infusion room at the hospital for treatment and joke around with the nurses and all my chemo comrades. We’ll hang out in our vinyl recliners while poison drips into our veins and we’ll laugh…because we always do.

Yup, today I will laugh, and for at least right now, that will have to be enough.