5 Years.

Today marks 5 years since my breast cancer diagnosis! It seems like yesterday and yet, at the same time, it seems like forever ago...

As you can imagine, this date holds a lot of memories for me, both good and bad. And, as it approached, I knew I wanted to contact you with heartfelt gratitude for the role you played in cheering me on through the muck of it all.

I will never forget all the wonderful emails I received during those dark months. In fact, I've kept them all in a file, because some are just too precious to delete! I will never forget the gifts and meals that were brought to our home to lighten the load. I will never forget the anonymous, GIGANTIC basket full of goodies that was delivered to our doorstep before Thanksgiving! (I did finally figure out who sent it...hahaha!) I will never forget the phone calls, the flowers, the notes, the PRAYER that covered me and my family. I will never forget the dear friends who flew into town just to be with me...who came over just to rub my back when every inch of me was hurting from the chemo.

My sweet church family banded together and paid for several months of a housekeeper, so that I could rest comfortably in a clean home. Gift cards were given to us for restaurants so that we wouldn't have to think about meal preparation.

And, I will never forget the few special people who spent countless hours learning how to care for our little Claire who had been diagnosed with type 1 diabetes just a year and a half earlier...and then, they actually cared for her!...doing checks in the middle of the night so that Dan and I could rest.

Did I mention the friends who didn't say "call us if you need anything!"...instead, they actually called me..."have the kids ready by 9 am," they would say, "and they will be returned clean and ready for bed by 8 pm." No, I will never forget all of you.
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It's been 5 years. Because this special date was coming up, I asked my oncologist about it at my last check in April. I asked her about the 5 year mark. When do we count the 5 year mark? Is it 5 years from diagnosis? 5 years from surgery? 5 years from the end of treatment? I was confused.

She told me that patients are always asking her that. And, medically it would be 5 years from the end of treatment, when bloodwork shows no evidence of disease.

"However," she said, "I think you should celebrate on June 8th."

: )

As I've contemplated this day, it dawned on me that my most sincere prayer has been and is being answered. I am here, raising my kids. Thank you, my dear Lord and my God!!

Claire was just 3 when I was diagnosed. Chase was 6. And Cole was 8. What a difference 5 years truly makes! We now have a teenager! Chase just turned 11. And Claire, the youngest is 8 years old.

I told my 11 year old that today is my anniversary. He looked puzzled. "Your wedding anniversary?" he asked. "I thought that's in July."

"Noooo," I said.

Without hesitation, he said, "oh, it's your breast cancer anniversary...your cancer-versary!"

"Yes. Yes, it is."

So that's what I'm doing. Celebrating. 5 years.

Warning:

Is it just me?  Or does everybody get a bit unnerved opening pump supplies to find that one piece of paper telling you that the products you are about to handle, actually place subcutaneously into your daughter's skin, contains potentially cancer-causing substances?

I try not to anymore.  But everytime I open that box from Medtronic, there it is.  Every three months, that single sheet of paper is victorious in taking a few minutes of my mind's thoughts.  Potentially cancer-causing.  Potentially.

It aggravates me.  I mean, what option do I really have?  We're dealing with diabetes.  I want the best insulin therapy for my daughter.  It feels like a double kick-in-the-shins to know that the products that are keeping her healthy could, ultimately, be harmful.

On another front...I'm a cancer survivor.  So my antennae are working overtime, all the time, when I hear that word.  Or read it.  I'm more mindful now.  I watch what I feed my body.  I am cautious about many things that normally a person would not think about twice.  I over do it with the sunscreen.  I've made peace with vegetables.  I don't want to give cancer even the slightest advantage over me or my family.

But, then, there it is again.  Every three months...a reminder.  A reminder that it's really out of  my control.
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Do we, as consumers, pump users and parents of pump users demand products that do not contain these harmful chemicals?  Do we add this to our ever-growing lists of things to do.  I think, maybe, we do.

Invisible Illness Awareness Week - September 14 - 20th

So, today is the beginning of Invisible Illness Awareness Week.  Who knew?  I guess I wouldn't have either if I hadn't read Kerri's post from Six Until Me this morning.  I had another post all polished up and ready to go.  But then I began pondering...invisible illnesses...
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I've always felt that diabetes is an invisible illness.  If C wasn't checking her blood glucose or manipulating her pump, the average passer-by would never know of her disease, to just glance at her.  She's the epitome of a 7 year old girl.  In my opinion, she's cute!  Flowing blond hair, blue eyes, a hint of freckles...her body - fit and proportioned.  She looks healthy, happy and energetic.  In fact, that's the response I receive sometimes when people find out about her type 1 diabetes..."But she looks so healthy!"
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Then there's Middle C.  He is the typical 10 year old boy.  He plays baseball, nearly year-round.  And if he's not on the field he's riding his bike with friends, jumping everything in sight.  He's lean and looks healthy.  However, he had a severe episode with his asthma this past June.  It kind of caught us off guard, really.  He hadn't needed an inhaler or nebulizer for years.  But when we had heavy, moist weather throughout May and June a while back, coupled with a new little feathered friend in the house, it made for miserable breathing conditions for him.  It was scary.  And it shook us up a bit, reminding us to be prepared.  But to look at him now..."He looks so healthy!"
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Okay, me next.  I am four years out from my breast cancer diagnosis.  My hair's back in full force.  I don't look gaunt and "chemo-ed" out anymore.  I had a great plastic surgeon and others to help me look pretty-darn-near the same as I did before cancer (fully clothed of course).  And, except for about 25 extra pounds (ahem), you'd probably think..."She looks so healthy!"

I bet if you thought about it, you or someone close to you also lives with an invisible illness.

Day in and day out, moment by moment even, C's diabetes must be monitored and balanced for her to live.  Middle C's asthma?  Well, thankfully it's not an everyday ordeal.  But it is something about which to be mindful.  To hear your little kid tell you that he can't breathe well, puts an extra beat in your heart rate.  And, my cancer?  At the time being, it's taken care of and I do feel healthy.  But I feel different.  I will forever experience the side effects of the treatments.  And I live daily with the possibility of recurrence.

So...what is the point of Invisible Illness Awareness Week?  I believe it's to help all of us realize that just because someone "looks" healthy, doesn't mean they don't struggle with something.  Everybody's got their stuff.  And, as a friend, sometimes the best and most powerful thing you can do for someone is simply be there.  Show an interest, a sincere gesture to learn and understand.  Because chances are, if you haven't been touched by illness already, you or someone you love will be.  And, it's in those times when we can all use a good friend who understands.

12 Midnight & 3:00 AM

Okay, this is for all you type 1 parents out there, especially my mom friends who can so relate to me and this life we lead with diabetes in our families. I hope I can convey what I truly want to convey here.

When C was diagnosed back in December 2003, it was a whirlwind of education! We were handed a gigantic notebook full of diabetes information. And there is a page in it that haunted me for two years. It states: For a while, you will need to check your child's blood glucose at 12 midnight and 3:00 am.

That's what we did...actually more than that at times. I mean, our little girl was still a baby. She couldn't tell us how she was feeling or tap me on the shoulder at 4:00 am to tell me she has an unquenchable thirst and that she may be high. So, that was our assignment...do blood glucose checks every 2-3 hours, round the clock.

In the beginning, I tried to take on this new job by myself. After all, my husband had to get up and go to work! How can he be waking every few hours and still function properly on the job? But soon, it was clear that I needed help. We switched off for a while. Then we tried midnight for him and 3:00 for me. He would stay up, check at midnight and then go to bed. I would try to go to bed at a decent time and then get up for the second check. Nothing was really the perfect plan. And here's why: we need sleep! We, humans, need good, uninterrupted, restful sleep. It's precious. It keeps us healthy and alert. It allows our immune system to re-boot itself. It is so necessary.

When a child is diagnosed with type 1 diabetes, there is a demand on the parents to give up this precious thing. This thing that helps us stay strong and mindful for our children. It's quite a dichotomy. It's hard to wrestle. And what of the other kids in the family? During these first couple years, I was nowhere near the mother I wanted to be. I barely functioned. Coffee and Diet Coke became my lifelines. They would replace a lunch here, a breakfast there. I began ignoring my own nutrition as I grappled to understand carb-counting for C. I was a complete mess.

I am convinced that the medical teams that are there for us, will never tell us that it's okay not to check our kids over night. They need to cover themselves. And, I do understand that. But a full night's sleep? It was such an elusive thought for us those first 2 years. Our first endo, Dr. K, finally did say to me..."this is your child and you need to feel okay about not checking her through the night. But you also need to think about the quality of your life too. And getting enough sleep is a big part of that."

In the meantime, after 1 1/2 years of injections, C went onto the insulin pump. That was a whole other learning experience. It did make managing this disease "easier" in some respects. But C's numbers still baffled us. We still made adjustments and checked at midnight and 3:00 am. But then, something else entered our lives...

In June of 2005, two months after C had gone on the pump, I was diagnosed with breast cancer. Talk about stress! Needless to say, things had to change. I would be going through multiple surgeries, chemotherapy, reconstruction, doctor appointments, doctor appointments, and more doctor appointments. I knew I would not be able to keep up these overnight checks and take care of myself too. And...I needed to take care of myself. My kids needed me! This was the biggest wake-up call of my life.

Thank God, my friends and family were all over it. Two sisters and two dear friends went out to CHLA and got "all educated" on the pump, how to change the sites (and this was with the long catheters...no Quick-Sert), and how to care for C. She was only 3 1/2 at the time. There would be no preschool for her that year as we had planned. There would be countless doctor visits and staying with people other than mommy. These wonderful people scheduled time out of their own lives to spend the night on our couch and be available for those nightly checks. These would be on the nights when my chemo treatments hit the hardest. Sometimes, they would come after the kids were already in bed and slip out before they woke, leaving us notes with numbers scribbled down and bolus corrections or lows noted.

There's far too much to share, in regards to my own story here. But for now, I want to focus on the issue of sleep. I know, all too well, what the lack thereof can do to a parent. I, by no means, think that the insufficient sleep or the stress diabetes caused my cancer. But it certainly didn't help and may have even sped up the process.

After the surgeries and the chemo and more surgeries...and after I started to slowly feel stronger (and my hair started to grow again!), I knew I needed to let go of these nightly checks. I wrestled with it. I prayed. Dan and I talked about it. It was time. It was time for us to release this from our hands.

Now...we are Christians. And I have a deep faith in God. But I always hesitate sharing this on the blog because, well, I just don't want it to turn people off. But that faith is so key in the release that occurred. I must share that fact. I know God loves C even more than I do. I know that He intervened when C was close to comatose at diagnosis. And, so, I place my trust in Him each night. It's not easy, but I do it. And this is not to say I don't worry anymore. I do. I wake up with an anxiety that is difficult to explain to people who don't live with this disease. And when my body wakes at 4:00 am with a sudden panic, I may still creep down our hallway and do a quick check.

My 3 inspirations.

I just know that I want to be around to raise my kids. Therefore, I must take care of myself. And allowing myself to sleep through the night is where I choose to start.

We still check her periodically in the middle of the night. When we get ready for bed and she's super high or low, of course we set the alarm and check again. When illness hits, of course, we check her every hour if need be. But on a nightly basis, we've released it.