My Cancer Story

Yesterday, I started to put together my cancer story. I'm taking the blog posts I wrote here, adding whatever I missed, and putting them into a book. It's been quite awhile since I read the posts, and it was tough - reliving what happened almost 3 years ago. I'm glad that I wrote about my cancer journey. There are several things I didn't write about, and now I wish I would have. Over time, things fade, and it's hard to remember what happened. In a way, I think that's good - but I really don't want to forget it all, because I learned so many things during those 2 years.

I made it from July 2008 through to June 2009 yesterday. As soon as I'm done with the blog posts, I'll add pictures, and then it will be done. I'm toying with the idea of making comments throughout the book - from my point of view now.

Although it's tough to write my cancer story, it's important. Writing everything down is so therapeutic.

“Writing is a form of therapy; sometimes I wonder how all those, who do not write, compose, or paint can manage to escape the madness, the melancholia, the panic fear, which is inherent in a human condition.” --Graham Greene

NEW GOVERNMENT GUIDELINES ON BREAST HEALTH - WHAT A JOKE...

Unfortunately, this isn't a joke - it's real...

I am FURIOUS!!! I just watched a report on Fox news this morning about the "new government taskforce guidelines" for breast care. Here are the new guidelines:

1. Mammograms are NOT needed for healthy 40-49 year olds of average risk.
2. Women, ages 50-74, should get screened every 2 years, not annually.
3. Mammograms NOT needed for women ages 75 and up
4. Doctors should no longer teach breast self-exam

Can you believe this? Here is what the report said.

Alisyn, the reporter, interviewed Dr. Cynara Coomer, a surgeon and Professor of Cancer Surgery at Mt. Sinai. Dr. Coomer called this "a step backward". She said it was "very coincidental timing" and "motivation is about saving costs as opposed to worrying about over-diagnosing/treating women." She continued, "...shouldn't be worrying about saving money at the expense of women." She said that 40% of her practice is women under 50.

A few of the things they discussed...

Less testing translates to less treatment = some cancers will streak by.
For every 7-10 women who are being over-treated (mammograms), we are saving 1 woman's life - that's worth it. (I personally think it's worth it - what about you?)
Women who have breast cancer under the age of 50 tend to have much more aggressive tumors - the years are going to make a difference for these women.

Dr. Coomer said "This is rationing, and we need to be very concerned about it." "The 'Public Option' [in the new healthcare plan] will be using these federal guidelines as opposed to using the guidelines from the American Cancer Society. The American Cancer Society in not going along with these guidelines, and we can only hope that the private insurance companies don't follow suit."

Wow. I immediately emailed the newsroom - I want my voice heard. I don't know that my emailing Alisyn will make any difference at all, but I CANNOT be silent on this matter. Here is my email to Fox:

"Alisyn -

I just watched your report on the new government guidelines on breast cancer screening and I am FURIOUS!
I cannot believe that the guidelines that have been set by the American Cancer Society are being challenged - who better to set guidelines like these - the cancer society or government bureaucrats who know nothing about cancer?! These new guidelines are a joke -
NO mammograms needed for ages 40-49?! So, the women who are in their 40s don't really need screening, even though 100s of 1000s of women in that ages group are diagnosed every year?!
Mammograms for ages 50-74 only EVERY OTHER year?! Personally, 1 year for my cancer is a big deal, since mine was a fast growing cancer.
Mammograms NOT NEEDED for women over age 74 - ok. What?! So, only women between 50 and 74 even matter to the government?!
This one really confuses me: doctors should no longer teach breast self-exam? I don't understand - why? Maybe because during your self exam you might find something and then have to get a mammogram? Whatever. What they should really say is only women between the ages of 50 and 74 should do self exams - we don't want anyone else - younger or older women - finding anything that will make it so that we have to take care of them.

I'm 43 years old. The ONLY way my aggresive breast cancer was found was through a mammogram. If they wouldn't have found it last year, I've been assured that by the time I could actually feel the tumors, it would have been about 4-5 years later, and I would have been so far advanced, they wouldn't have been able to save me. And according to these guidelines, I shouldn't even do self exams, so if I followed those guidelines, I wouldn't have found the lumps - I just would have died.

My mammogram - that I got at age 42 - saved my life. SAVED MY LIFE - a life that, according to the government, doesn't really matter. I was low risk - I had no risk factors.

HOW DARE THEY?! How dare they make a decision like this that will affect so many womens' lives. I'm willing to bet that not one of the people on that task force has ever been touched by breast cancer, because if anyone had, they would be fighting like crazy to keep the American Cancer Society's guidelines. And when I say 'touched by breast cancer', I don't mean just women who have had it, I'm talking about their families and friends. They are changing not only the lives of 1000s of women, but their families' lives as well - my breast cancer had an impact on me, my husband, my 4 sons, my parents, my sister, my boss, my friends, my neighbors, etc.

Anyone who has even one active brain cell in their head should FIGHT LIKE HELL to get this changed. They should fight like hell to oppose the government health care plan too - this is only the first of many terrible things that will happen if we let this plan take hold."

I really hope that anyone who reads this post will forward the information on to all of the women they know - and try to get the word out about this.

LET YOUR VOICES BE HEARD - DO NOT SIT BY SILENTLY AND LET THE GOVERNMENT GAIN CONTROL OVER AN IMPORTANT ISSUE LIKE THIS.

Check out my other blog this week - featuring breast cancer survivors

Just a reminder that this week, on my other blog - Incredible Women (click here to visit)- we have been celebrating PINK week. This last week, in honor of October being Breast Cancer Awareness Month, I've interviewed several cancer survivors and some of the nurses from the chemo unit who took care of me. Head over there are check out their interviews...

The interviews are inspiring - I love these women!

Cancer SUCKS!

Sense of smell triggers emotions

Something weird happened to me this morning in the shower. Last year, during most of my surgeries and during chemo, I used this body wash soap (Olay Ribbons with lotion). But, I haven't used it for quite awhile. This morning I opened the bottle and used it. Mistake. As soon as I smelled the soap (which actually smells really good), I started having flash backs to all of that awful stuff! It was so weird. I thought about showering with drains in my chest, showering with just barely enough energy to get in and get out, showering and almost fainting from sickness, etc. It was very unpleasant. The same thing has happened to me when I've used the body powder with the chamomile scent that I used during chemo.

Isn't that weird? Has this happened to anyone else? I guess our sense of smell triggers memories and emotions. Interesting.

By-the-way, I won't be using those products anymore. Yeah.

One Year Anniversary!

It's been one year since I was diagnosed with breast cancer. One year ago, today, I heard those words: You have two kinds of breast cancer. I've been watching this anniversary approach for a few days now, and have been thinking back to one year ago. Little did I know, when I heard those words, what they would mean. I have a need to write about this year - it's almost like being underwater and not being able to breath. There's a certain panicked feeling. I'm not sure why. But, maybe if I review what I've been through this last year, I will feel more in control again. I'm not sure that even makes sense. Out of control - that's how I've felt for the last year. I've felt like every second since my diagnosis has gone flying by - there just hasn't been enough time to make the decisions that I made. You would think that when you've got to decide whether or not to have your chest cut off, the world would just stop and hold it's breath. But, no. It seems like the world speeds up. Everything comes too soon. You decide on something and it seems like that something happens the next second. You can't slow it down. It's funny how things speed up and then slow way down - hurry, hurry, hurry... bi-lateral mastectomy, chemo, reconstructive surgery. Then, you lose your hair and your nails and they take forever to grow back. Your health and strength is quickly drained away, and then takes forever to come back.

When you've gone through something so life-altering, you look back and think "No way - I did not just make it through that!" Seriously. I really don't know how I'm still here. Sane. Recovering.

How did I have the strength to...

Go through a random needle biopsy by myself? I nicknamed this kind of biopsy, "harpooning for cancer". That's exactly what is was. I remember lying there with tears streaming down my face, as the doctor jabbed another needle in yet another "random" place - without. numbing. medicine. It was all I could do, after one side of my chest was done, to turn over and hold still for the other side. It's one of the worst things that I've ever had to do. The pain was terrible. I will never do that again. Ever.

How did I have the strength to...

Have a bi-lateral mastectomy? I wasn't really strong. This decision almost killed me. I had to take full responsibility for it, and that wasn't easy. I remember lying on the operating table, starting to lose consciousness, and all of a sudden I just started panicking - crying uncontrollably. The nurse was kind and gave me a hug, and tried to calm me down. She asked me why I was crying - was I scared? Um... Yes! Mostly, scared of what I'd wake up to! Half of me.

How did I have the strength to...

Go through chemo? Think about it. I voluntarily walk into that room, sat down in a chair, and let them pump poison - real poison - into my body. I can't believe I didn't get up out of the chair and run screaming from the room. What gave me the strength to sit there? I remember being so scared - I've never been that scared before. It was fear of the unknown, I think. What would this poison do to my body? I knew it would kill the cancer, but what else would it do?

How did I have the strength to...

Make it through each night after that first chemo treatment? I rarely slept during those first three weeks. There are night demons that disturb your sleep when you've got poison running through your veins. When everything else in the house goes silent and sleeps, your brain doesn't. I remember waking up at different times during the night to tug on my hair - just to make sure it wasn't falling out yet. I would wander through the rooms in my house, thinking. And, during the dead of night, your thoughts are not pleasant ones, believe me.

How did I have the strength to...

Shave my head? That was almost worse than the mastectomy! Your hair is your identity. At least, it seems like it is after you've lost it. It's awful for a woman to be bald. It plays with her mind - kills her self esteem. And what about going out in public after you've shaved your head. I really can't believe I ever left the house.

How did I have the strength to...

Sit in the chair at the plastic surgeon's office and let him fill the expanders? I remember walking into the exam room and seeing those syringes filled with saline. I hate needles, and there I was, staring at 2 inch long needles attached to 6 inch long syringes, as big around as a cucumber! 60cc shot into each expanders, every 3 weeks. It was awful... really, it was awful.

How does one find the strength to go through anything hard in this life? Where does that strength come from? Well, I believe that every person has an inner strength - something that we pull from deep down inside of us when we have to. But, I also believe in the strength that God gives us. I know he walked by me through this whole last year, and, at times (probably more often than not), He carried me. I've felt his love and concern for me. I've felt His encouragement when I didn't think I could get out of bed, or get through the recovery after a surgery. I'm so grateful for the spirit of the Lord in my life. I would never have been able to get through this last year without that spirit leading and guiding me.

I think I'm a stronger person today, than I was one year ago. I was able to make it through a year of hell, and I'm still around to continue fighting. It's ok, too. I'm fine, and I'll continue to heal and regain strength. I look forward to one year from now. My goals? To be healthier than I was last year when I was diagnosed. To make exercise part of my daily routine. To learn everything I can about nutrition, so that I can take care of my body. To smile more - and to be truly happy with myself and my body.

I'm humbled...

This is a post I apparently forgot to post after my last surgery (I blame the pain pills!) - I just found the rough draft. It's an important post, so here it is...

Once again I'm reminded of all the incredible people who love me. Our ladies church group arranged for dinners for 3 nights after my surgery - this puts us up to around 50+ meals they've provided us since I was diagnosed 1 year ago. I've received 2 or 3 cards in the mail this week - friends just checking up on me, making sure I know they are praying for me and love me. I'm always humbled when things like this happen to me. If there's one thing I've learned during this whole last year, it's the meaning of love, charity, and service. Every one of the people who have served me holds a special place in my heart. There have been friends and neighbors who have told me that they regret not doing more - that all they've done is pray for me. Believe me, I know the power of prayer. Praying for my welfare is a HUGE thing. I'm really, really, very grateful.

Would I have learned about charity and service any other way? Possibly. But, nothing drives home those wonderful concepts like a whole group of people taking care of you.

I'm humbled. I'm grateful. Thank you. I love you all.

Relay for Life Cancer Walk and John Canaan Concert

This coming Friday/Saturday is the Relay for Life, held at Syracuse High School in northern Utah. My sister is the captain of our team. It's an overnight walk - really, a very fun night. My parents will be there with the trailer and will be making hamburgers and hot dogs for anyone from our team. My cousin is coming from California. Her sister, a cancer survivor, will be there, too. I'll get to do the survivors' lap with her. This is my first cancer walk since I was diagnosed last August. This is where I'll celebrate being a survivor with family and friends. I'm excited. I'll also be selling tickets there - to the Health Wellness, and Relationships Expo, being held that night at the Larry Miller Campus. (9750 S. 300 W. - Sandy, Utah (West of I-15). It will be held from 6:30-10:00 pm that night. It features the following: Dr. John Lund, Justin Williams (American Idol finalist),
Dr. Cliff Dunston, John Canaan and the One Voice Children's Choir. They'll be speaking on "The Way to a Man's Heart - The Way to a Woman's Heart - How to Keep Superman Flying and the Queen Reigning" (presented by John Canaan), and "Take a Look at Your Heart" - analysis of the #1 challenge in relationships: "Hints." (presented by Dr. John Lund). There will be lots of give-aways, demonstrations, learning, inspiration and encouragement for your life and relationships. It's a great date night for couple and families. The best part is that I'm selling tickets for HALF PRICE - just $10.00 each. And the really great part is that $9 of each ticket sell will go to Relay for Life - for cancer research! I'm really excited that John Canaan gave me this opportunity. I've got 75 tickets, so first come, first served. ;-) I hope to see many people at the cancer walk and at the concert that night. Email me if you want tickets: nafari01 (at) yahoo (dot) com.

Calling All Breast Cancer Babes

I'm not sure the best way to get this out - but, I'd like to start interviewing women who have had breast cancer OR are fighting breast cancer now OR who are survivors, etc. Then, I'd like to highlight one of you beautiful women each week on my blog. If you are reading this and wouldn't mind me interviewing you, please leave a comment on this post OR please contact me at nafari01 (at) yahoo (dot) com. If you know of someone who fits the above description, let them know/have them contact me. There are so many amazing women out there who have a story to tell about breast cancer. I want to meet you! Help me help other women with breast cancer - tell your story.

Looking forward to hearing from A LOT of you!

-Kara

Wading through bills

Just spent some time wading through medical bills. I'm trying to figure out why, when I have an out-of-pocket maximum of $1500 per year, I've actually paid over $2000 so far. And, I have two more bills totaling $1000! I know I should be grateful for the incredibly good insurance we have (I am), but I really hate it when another bill that is "your portion" arrives in the mail. This whole cancer thing has been way too expensive!