World Cancer Day 2010

I can’t believe it.  How weird is it that my diagnosis cancerversary is the same day as the World Cancer Day.  And I didn’t even know it?  Not that I was thinking about this two years ago when I got the phone call?  But how did I miss this last year?

So I think it’s so nice because I get to tell you WHY there is a World Cancer Day and I will do this every year on the day of my diagnosis.  So you wanna know why?  To help reduce these cancer causing risks:

• Stop tobacco use and avoid exposure to second-hand smoke

• Limit alcohol consumption

• Avoid excessive sun exposure

• Maintain a healthy weight, through eating healthily and exercising regularly

• Protect against cancer-causing infections

the day my life changed

I had an echocardiogram today. They are a pretty routine part of my life; I have them every few months to make sure that the Herceptin isn’t damaging my heart. So far, so good.

It’s kind of boring lying there, so I started to play a little game with myself. When I lay down at the beginning of the test, my resting hear rate had been 65 bpm (beats per minute), when I worried about my results, I noticed that it had shot up to 75 bpm (I could also see on the screen that my heart was whooshing away but I couldn’t tell whether it was doing it’s job efficiently). I took a few deep breaths and my bpm dropped again. I remembered that I have only bought one Xmas present and my rate went back up into the 70s. Up and down it went (I hope that I didn’t affect my results by doing this).

And then it occurred to me that today is December 2nd.

Exactly three years ago, I found the lump in my breast. That day, the world tilted on its axis (I felt it do that as I stood in front of my bedroom closet not quite believing I had this big hard mass on the side of my right breast) and my life was irrevocably changed.

If you had told me at that moment, how the next couple of years would unfold, I never would have believed that life could be as good as it is right now, despite the cancer. Don’t get me wrong. If I could choose to have never had cancer, I would.

I hate having cancer, hate being in treatment, hate the restrictions placed on me as a cancer patient and I do still grieve for all I have lost. There are many, many ways, though, that my life has changed for the better since December 2nd, 2005.

Maybe that’s why, when I remembered the date, my heart rate didn’t budge.

Whoosh! Whoosh!

Cross-posted to Not Just About Cancer.

“Shrink Wrap”

Throughout the new book published by Kids Konnected titled Love Sick, the comments or advice written by Lynnette Wilhardt, MSW, LCSW is labeled “Shrink Wrap”. A fun play on words, I think…  So as I continue to post on the questions that Lynnette is most frequently asked I thought this same label may be appropriate.

How do I tell my child I have cancer?

Most importantly, be as honest as you possibly can.  Children can tell when you are telling only half of the story.  Parents need to start with a basic explanation of what cancer is.

Cancer occurs when cells begin to grow and multiply in an uncontrolled way.

Normal body cells grow and divide over a period of time until they eventually die. But cancer cells continue to grow and divide and grow and divide. Eventually, they gather to form tumors. Tumors are lumps that can interfere with the body’s normal processes. Sometimes cells from a tumor break away and travel to a different tissue or organ. This is called metastasis.

As scary as all this sounds, most cancers can be treated and controlled and many people with cancer get better and lead normal lives.

After you have explained cancer, it is important to dispel any myths your children may have about cancer.  Here are some that come up frequently in our support groups: 

 –          Explain that cancer is not contagious.  Your children can and should still kiss you!:)  It is not like having a cold or flu.

 

–          Children cannot “cause” cancer.  It doesn’t matter how naughty a child is, they do not cause cancer.

 

When should I tell my child?

 

It is important to tell your child as soon as you have all the information you need to explain to your child your diagnosis and treatment.  The longer you wait to tell your child, the more they may sense that something is wrong and not understand why they aren’t being allowed in the “loop.”  It can also be detrimental to the child to hear about the diagnosis from someone else and not directly from their parents.

 

How much information should I give them? 

This depends a lot on your child.  Some children will want a lot of information, while others will not want to hear much at all.  It is important to tell your child as much as they may want to hear.  Watch for cues that they may be experiencing information overload and know when to stop.  In general, information is empowering, so if your child wants a lot of information then you should provide it to them.  It can also be empowering taking your child to your oncology appointments if they want to attend; this allows them to ask the doctor or nurse some of the questions that you may not be able to answer. 

My breast surgeon was also in agreement with telling the children the truth… Kids are very perceptive and they will hear you talking on the phone. We had a family meeting at our house when the kids got home from school. My course of treatment did change after we first told them, but they knew first. It probably will be one of the hardest talks we will ever have to have with our children, I know it was for me.

A picture says it all

These are my boys, B and D when they were 5 years and 8 months old. The day I was diagnosed with Inflammatory Breast Cancer. December 22, 2005.

This happy picture belies the harsh reality of that day. The mortality that came to roost on our young family’s doorstep so unexpectedly. Behind every picture is a story. This one is no exception…

I had recently returned to work from a 6 month maternity leave. It had almost been a relief to return to the simple stresses of a government job after the emotional trauma our family had been through in the past months. When D was only 8 weeks old we learned he was congenitally blind and would probably loose his hearing later in life. If you heard an odd sound on June 18, 2005, it was our parental hearts breaking.

In September though I started back to work full time I was still nursing part-time. By October, however, D was refusing to nurse on the right breast. At first I thought it was him showing his pique at my leaving him all day. He would pull away just as soon as I placed him to the breast and scream like a banshee. But he would calm down immediately when given the other side. As it continued Daddy-O & I remembered that we had been told at Children’s Hospital to be careful to change his nursing positions frequently because blind babies are prone to developing positional preferences. Well, I figured I could tolerate a little engorgement if D had some favoritism going on. After all, I was going to ween him soon anyway.

So I waited it out until D was 6 months old in November and I weened him. For that 5 or 6 weeks I’d, of course, felt very engorged on my right side. Very heavy. And my breast was a bit larger and tender. Nothing you wouldn’t expect from a sudden nursing strike. And it just got worse when I weened him completely. In fact, the heaviness in the center of my breast sort of coalesced into an actual mass at some point. It kind of solidified, I guess. I had several girlfriends who had had similar experiences after breastfeeding. It had gone away for them after a few weeks. So I’d wait a few weeks. I wasn’t really worried about it. It was too big to be a lump. It was the size of my fist.

There was only one problem with my little fantasy. My period started up again. And the whatever in my breast got bigger.

So Thanksgiving weekend found me with a slightly larger than fist-sized mass in my right breast and all my friends and doctors out of town. I couldn’t call my OB/GYN fast enough that first week in December. The first available appointment wasn’t until December 23rd. Note: I am not one to push the panic button. Far from it. I tend to be abnormally calm in the face of adversity and I rarely complain. (Case in point: I drove myself to he ER with a tubal pregnancy, my fallopian tube ruptured on the way & I still made it all on my own.) Yet I had to step in here. My big complaint to the nurse was that “I was not comfortable waiting 3 weeks to have a fist-sized mass in my breast checked by the doctor.” I guess it worked because I was worked in the next week.

I left my OBs office with reassurances that it “did not feel like cancer”, an appointment for a mammogram and a consultation with a surgeon.

Naturally, the mammogram showed nothing. Yet the technician knew, as I did, that something vast was there. She insisted that the radiologist follow up. The ultrasound also showed nothing conclusive. I was sent away with a clean bill of health. Thankfully I still had the surgical consult to go.

When I got to the surgeons office I aggressively pursued a core needle biopsy. Denied. What I received instead was a fine needle aspiration. Holy cow! Not a nice procedure. A few days later, those results came back a-typical but also inconclusive. Moving on to the originally requested core needle biopsy. While this sounds meaner than the FNA it is actually much easier. Mostly because you are numb when they do it. I’ve come to realize how important this is.

On December 22, 2005, while sitting at my desk on a Friday afternoon, the nurse called and asked me to hold for the surgeon. (FYI: that is never a good sign.) It was, of course, cancer. He rattled off a bunch of stuff that I don’t even remember now because while he was talking I was hurriedly typing off emails to my Mom & the secretary who had been waiting with me for the news.

“It’s cancer,” was all the messages said. When I hung up the phone I cried at my desk.

I cried for my babies that were probably going to lose their mama. I cried for the road I was about to travel – a trip I’d never asked to take. I cried at the thought of telling my husband when he was only just healing from the soul-wounds of D’s disabilities. I cried to wash away my weakness and find my power.

Over a year and a myriad of medical treatments and procedures later I discovered blogging. It has been my joy and my salvation. In the blogosphere I have found a world of woman that understand where I have been, where I am now, and where my future may take me. I fit into this world as I don’t fit in the other support groups filled with quilters, motorhomers, and grandmothers. And I have found information.

In the blogosphere I find help with my boys. How do you explain a thing like cancer to a 5 year old? When and older person gets cancer you tell children that they are sick. That seems right to kids. They’re old. But Mom’s are America and Apple Pie and Home and Comfort and all the things that comprise childhood security. When a Mom gets cancer it rocks a child’s world. It rocks the very foundation of the family.

Wow… this has gone on too long. It was hard to tell B. But Daddy-O and I did the best we could without any guidance. We kept things upbeat and positive. We like to live life like that anyway. A Control Freak makes a poor victim. Ha! So take control!!!

At any rate, this picture is the first evidence of me taking back the control of my life. I chose to continue to live. To live with my boys and for my boys. That Friday before Christmas and for every Christmas to come. With cancer or without, every day I am on this Earth will be a day I live.