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I never asked “why me”. I always thought “better me”.
Today is one of those days that reinforces that.
We have a good friend whose girlfriend has been diagnosed with breast cancer. I’ve never met her. But through him I am able to help. I can offer advice. Help for nausea. Advice on hair loss. Disability is available. It’s a reprieve. Take it. I have hats and beanies. They are hers for the taking.
It feels good.
It feels right.
It feels like that year or so five years ago weren’t for naught.
I don’t pretend to know God’s plans.
I really have no credible idea why I am still here and others are not.
God knows. He has vision. He sees the big picture.
I know I’m the Cheese.
I know not everyone survives.
I know I may not always survive.
But I also know that I can help.
I offer hope. I offer help. I offer insight.
How can I run from that?
Who can really ask for more from life?
Cross-posted to Mothers With Cancer
I often compare my cancer experience to a game of Farmer In The Dell. Only in this version it’s Cancer that takes a wife… and a child… and a nurse. And I, well, I am the Cheese. And I stand alone here in my survivorship.
That’s how it feels, anyway…
Ironically, at the last appointment, my oncologist thought to talk with me about “moving on” with my life since I’m “cured” now and all. Moving on from self-identifying as a cancer patient. Moving on from surrounding myself with cancer blogs and cancer patients. Moving on from the death and loss. Is that even possible? She postulates that at some point in survivorship it becomes unhealthy to continue hanging with the cool cancer kids.
Yeah… I get that.
That whole “moving on” thing has looked particularly appealing in the last week or so, as we of the breast cancer and Mothers With Cancer worlds hold virtual vigil at the bedside of Susan Niebur. She has single-handedly done more for breast cancer education than anyone I’ve ever known. Susan is one of those people who attract others. In fact, nearly every woman I know in the cancer world, I know because of or through, Susan.
And the world is going to lose her.
Cancer will take another wife… a mother… a planetary scientist… an advocate… a friend.
I can’t be the Cheese! I refuse! I will seek out the unwilling members of this effed up club! I will support them! I will encourage them! I will cry with them and for them as I clutch their hands tight, refusing to let them leave the circle, too!
It’s the least I can do…
In October 2011 I reached the 5 year mark. Cancer-free for five fabulous years! They certainly weren’t five worry-free years, by a long shot! Early last year my blood work started showing some changes. My Alkaline phosphatase levels were fluctuating. They would go higher than normal, at my next appointment would drop back to nearly normal again, only to raise fairly drastically the next go round. Very much like a roller coaster – a very not-fun roller coaster where I worried about liver or bone metastasis. Of course, I got my very permanent, very meaningful 5-year tattoo in October anyway because I’m very, very stubborn like that.
So, this morning I had my 3 month follow-up appointment with my wonderful Oncologist, Dr. Villa. She’s wonderful! Incredible! Awesome! I fully and completely credit her (and God, of course) with saving my life. I’ve even forgiven her for scaring the bejeebus out of me when I asked her what my recurrence risk was way back when in May of 2006. She didn’t even blink an eye when she said, “90%”. Jeez! You could sugar coat it a little, Lady!
Anyway, back to the appointment. I’ve been very glad to have one coming up since I’d developed some sensitivity in some of my lymph node areas. I’ve been losing sleep over it. At least I think that’s what has been disrupting my night-time routine. Maybe I’ve been worried. Maybe a little bit. Maybe. So, imagine my surprise when she walked in to the exam room and told me that she was going to consider me cured.
Wha? Huh? Did I miss something?
Yeah, you heard me right! The other “C” word.
Cured, as in, gone. No more cancer. Not ever.
OK. Am I the only one that thinks this might be a bit of calling up the devil? Scary stuff…
So she explained herself. First off, my rogue Alk Phos levels have returned to normal. In fact, my labs are “perfect”. <Insert pride and preening here> Then there’s those odds… the 90%… Turns out most of those turn out to recur in the first 18 months. Particularly the Triple Negative Inflammatory Breast Cancer patients, like me. However, turns out that a small percentage of Triple Negatives have cancers that are particularly susceptible to chemo. Women with this small percentage of Triple Negative cancer who manage to make it to the three, four and five-year marks also tend to never recur. Never.
Joyous of all words, that “never”.
So here I sit with 5 years and 3 months of cancer-freedom under my belt and a new “C” word behind my name.
Stella, cancer patient.
Stella, cancer survivor.
Cross-posted to Mothers With Cancer
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!
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 Mothers With Cancer
The boys and I are just returning from a trip to my Grammy’s house – a visit that will most likely be our last. She has advanced lung cancer. I have mixed feelings about Grammy’s particular cancer.
Unlike breast cancer and most others, it is a disease of her own making. A bad choice made by a 12-year-old girl in a time when smoking was cool (and maybe even good for your health), that became a lifetime habit and, eventually, a death sentence. I regret her choice, and my Mother’s after her, even if they don’t. On the other hand, there is virtually no monies spent on curing the lung cancer of a smoker. There is really no hope once diagnosed. And the ticket bought with a 12 year old’s pocket money 68 years ago was for a humiliating, frightening and painful ride.
The very first symptom of Grammy’s lung cancer was a loss of balance. Did you know that? I always thought it would be coughing or shortness of breath. Not so. First she lost her equilibrium so that she was falling all the time. Then she began losing weight. Lots of weight. Her normal 160 lbs dropped to a mere 110 in weeks! She began using a walker, then a wheelchair with help, until she is now lifted into her wheelchair and back to her bed like so much dead weight.
Grammy did chemotherapy. She lost her hair. Then she lost her husband. Ultimately, she opted to have radiation on her brain to stave off the tumor-forming enzymes that would take up residence there. That treatment has now taken her memory and her very being.
Grammy now has dementia. Her short-term memory has been shot for a while now. She thankfully still remembers most people most of the time.
I was writing this post on my iPhone on the train ride home and wasn’t able to finish. Here are more thoughts on the subject…
Not even two weeks after our visit with Grammy she is on the verge of being confined to bed. Mere days after we left she didn’t know who my Mom was. My Mom. Her oldest daughter. The one who lives with her and cares for her on a daily basis. Sure, the lapse was only momentary but the pain of it will last forever. This is how my Mom tells it…
Mom said something to Grammy that led with a “Mom, …...”, to which Grammy asked, “Why do you always call me ‘Mom’?”
Mom: “Well… I call you ‘Mom’ because you ARE my mom.”
Grammy (with a semblance of clarity returning to her face): “Ooooh, that’s right. You’re my little girl.”
And she cries.
Such a small exchange yet so telling. And crushing.
While we were visiting, Grammy momentarily forgot that my Grandpa Jess, her beloved husband, had passed several months before. The next morning she asked if her twin brother was still “with us”. She cried after each revelation. What a horrible irony that before the blessing of eternal forgetfulness she must bear the loss of her loved ones over and over again. Scabs ripped off. Fresh wounds healing. Scabs scraped away once again.
Grammy is so afraid she will be forgotten. She’s worried we will only remember the end. The cancer. The forgetfulness. The frailness and dependence. As if. In truth, it’s hard to remember that stuff. When I look at her I still see my Grammy of old. The woman who gave me the gift of writing. My forever champion! The loving, feisty, belching matriarch that introduced me to playing Hell.
These last months of being infirmed and bald are but a blip on the radar screen of her life. I could never forget my Grammy. As if. But I pray daily that my boys always remember the consequences of the choices she made as a girl.
We’ve all seen this touching poem written by an unknown cancer patient.
WHAT CANCER CAN’T DO
It cannot cripple love, it cannot shatter hope
It cannot corrode faith, it cannot eat away peace
It cannot destroy confidence, it cannot kill friendship
It cannot shut out the memories, it cannot silence courage
It cannot invade the soul, it cannot reduce eternal life.
It cannot quench the Spirit.
All this is true, and more. I am living proof. But it’s not just true about cancer. It is true about any situation in our lives. I know I have passed my positive attitude on to Danny. I hope he keeps it throughout his life. I offer this regarding blindness:
WHAT BLINDNESS CANNOT DO (by me)
It cannot silence sound. It cannot stop creativity.
It cannot dim vision. It cannot eliminate motion.
It cannot reduce self-respect. It cannot erase intelligence.
It cannot still hands. It cannot destroy heart.
It cannot limit dreams.
Here is my internal inspiration!
And here is the inspiration found in my inbox this morning. A blind photographer. Can you imagine? No? Well thankfully Pete Eckert could…
Amazing, right? I wish no less for Danny in his lifetime.