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.

Our Biggest Supporter(s)

Day 2 of Diabetes Blog Week:  Our Biggest Supporters

Okay, well, hmmmm...

Not to go the lazy route, but I feel it only fitting to refer to a post I wrote several months ago when I was privileged enough to be the featured blogger for the Diabetes OC.
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C was diagnosed on December 29, 2003. A diabetes community? We were it. We knew no one else who had type 1 diabetes. Our family and closest friends were as supportive as could be, but they, too, had no idea what this disease would mean for our family. It felt as if we were placed inside a maze. The only thing we could do was move forward.

Hospital. Education. Prayer. Sleepless nights. I remember being discharged from the hospital on a Friday. We had to be on our own until Monday morning when we were set to be at CHLA (Childrens Hospital Los Angeles), where the doctor assured us that we’d be taken care of. But we had to get to Monday. I was so scared. Injections? All on our own? I had dropped out of the nursing program in college because of this. The perfect irony.

I used the doctor’s cell phone number several times that weekend. But we did get to Monday. There we were at CHLA, learning soooo much. My head ached. We were given a gigantic notebook full of diabetes stuff – carbohydrate counting, scheduling, the different insulin, injection sites, etc.. And, that’s when we first met those wonderful people at CHLA…Dr. K and the dear, sweet nurses. How we clutched to them for our daughter's very life.

So, now, it was us, close family and friends, the CHLA nurses and Dr. K...our diabetes community. It was scary. It was lonely. Because, really, when we came home, and we weren't on the phone with the nurses, and Dan went back to work, and the boys were in school...it was just us...C & me.

Family and friends surrounded our little family with meals and help with the boys. But when it came to the diabetes stuff…I was it. I remember thinking “I did not sign up for this.” But as you all know, the job was mine, applied for or not.

On the phone with nurses constantly...I can still hear their calming voices, helping me to gather my senses enough at 3 in the morning to measure and give an injection of 1/8 of a unit of insulin to my baby.

During one of those first weeks after diagnosis, I had to get my wits about me in order to pick up my oldest (then, in 1st grade). As I wheeled C’s stroller past the classrooms, someone came walking right up to me...gave me the biggest hug with tears in her eyes. “My name is K, and I know exactly what you're going through.” She handed me a bag, over-flowing with goodies for C...cute band-aids, Crystal Light mix, small bags of snacks (clearly marked with carb counts), stickers, small toys, a wonderful purple teddy bear...and her phone number. She said “diabetes is so difficult. Call me whenever you want.” Come to find out, her daughter was a second grader that year and had been diagnosed when she was just 3 years old.

So...now it was us, friends & family, CHLA staff, and now...K & her family. I can't tell you what a comforting thing it was to hear her say that diabetes is terrible...it's so difficult. In a strange way, that eased the burden slightly. Because, finally, someone else felt it too. I wasn't alone. To this day, when someone tells me something like "Oh diabetes?...Well, at least it's manageable." Oooooh...I just want to scream! It’s hard, people! And, no, sometimes it’s not manageable at all.

Well, time has passed. It’s been over six years of learning, failing, trying… In those five years, we have met 3 other families in our immediate city with type 1. I have passed on the goodie bag to another family I heard about through a friend. We’ve met a newly diagnosed toddler and family at a neighborhood park to talk to and encourage in all this crazy stuff. We’ve been welcomed with open arms to a JDRF walk team and have joined them for the last 4 years. We’ve spent time at Family Camps through CHLA talking with dozens of other families with stories so similar to ours.

So…now it was us, friends & family, CHLA staff, K & her family, 3 other families, our walk team and…

Enter the DOC.

I’ve been a lurker for years now. It started with searches about diabetes, the pump, a 504 plan, etc. And then, I came across a blog about real life with type 1 diabetes. This was a young woman’s life, out there, nearly every day for me to peer into, and learn, and laugh. Her writing encouraged me so much. Here was this lady, living a full and eventful life…with diabetes. Her writing was so rich, so vibrant, so full of humor! What hope I found at her site, sixuntilme.

Kerri’s blog pointed me to others. I couldn’t believe the wealth of diabetes knowledge I found…not from medical people, per se, but patients themselves. These were real people living wonderful lives, despite diabetes.

So…now it was us, friends & family, CHLA staff, K & her family, 3 other families, our walk team and “just the tip” of the DOC.

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Since writing the above post last June, we have met 3 more families living with type 1 diabetes.  I am always amazed that there is such a strong connection with these people.  I lean on the wisdom and experiences of other D parents who have spent many more years on the management of this disease.  It is often refreshing to simply get a different perspective on life with diabetes.

And...in the last year or so, there have been connections made with countless PWDs (people with diabetes) in the online community.  I have felt such a warm welcome from them.  And though I do not deal with diabetes in my own body, these people have surrounded me, as well as other D parents, with open arms.  What a great comfort to know that, really, at any given time, day or night, I can go to them with a thought, a question or simply a need for someone else to know what I'm feeling.

A Real Sob Fest

This has never happened before.  It seriously pulled the rug right out from underneath my feet...and it hurt (we have tile floors.)
C does not remember life before diabetes.  She was still a baby when the diagnosis was given.  Finger pokes, injections, site changes, 3 a. m. gulps of juice?  They're just a part of her life.  She's never known differently.  In fact, I honestly marvel at how she handles it all...most of the time.  She is a strong girl.  So her reaction the other day really took me by surprise.
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For us, I would estimate that 80 % of site changes are relatively painless and go off without a hitch.  But then there is the other 20 %.  For sometimes unknown reasons, the infusion set just doesn't cooperate.  It may hit scar tissue or a nerve and it can send C an excrutiating *zing* of pain...I hate when that happens.  When this is the situation, I usually ask her, "Does it hurt enough for me to pull it out and try again?"  There has only been one time when she said, "yes."

So, the other day when we were changing the site, it happened to be a bad one...you know, one of the 20%.  But, we got past it with just a few tears and I continued cleaning up the pump site aftermath.  I was just about finished when I heard quiet sobbing from the family room. 

I walked in and found C quietly crying into a pillow on the couch.  I asked her if she was alright, did her site still hurt?  Through her choppy, tearful breathing, she told me her site was fine.  She brought her head up from the pillow, looked me in the eyes and said, "When I grow up, I don't want to have diabetes!"

Well, it didn't take long until we were both sobbing and hugging each other.  Could this have been the moment when her reality hit her square in the heart?  I want to cry right now just thinking about it.  At 8 years old, she was formulating the intelligence to know that diabetes is a life-long disease.  Just like that.  I was at a total loss for words.

We sat.  Hugging.  Crying. 

I have tried with all my might to not let on how scared I really am regarding this disease, at least to her.  I've tried to stay strong, to find the positives in all of it.  We do the 3 month endo visits, the JDRF walks, the fundraisers.  However difficult it is, I reach out to people and share about her diabetes management to those around us.  And, yes, I do cry...but not in front of her.  Never in front of her.  This day was different.  I could not hold it back.

Through leaky eyeballs, I told her how I wish I could take this from her.  If, somehow, God could miraculously remove diabetes from her little body and put it in me...I would gladly accept it.  I told her how sad I was when she was diagnosed.  And how much it hurt my heart to poke and prod her.  She was my baby. 

We did more hugging.  Middle C walked in the room whistling a tune.  He took one look at us, raised his eyebrows, made a 180 degree turn and walked right back out.  Thank God for that.  C and I looked at each other and she gave a little chuckle.

"We must look like a mess!" I said.

Never fear, we ended our sob fest on an upnote.  We both breathed deeply.  I told her what a brave and strong little girl I have.  She, of course, corrected me.  "You know, I am 8 now Mom!"

"Yes, honey, you're a wonderful 8 year old girl."  I said.  And, I let her know that I would always be there to help her with diabetes.  And that we would continue hoping for a cure and doing the best we can. 

"I truly believe God has big plans for you, Sweet-pea.  You're gonna do great things in your life...maybe even because of diabetes."

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.