Good Bye to Breast Cancer - Hello to Good Health

I've made a hard decision. I've decided to finish with this blog, and then stop posting. I've got a few more posts to do to finish up filling in the blanks (the time between my diagnosis and starting the blog), and then I think I'm done. This has been a hard decision for me - this blog has helped me through a very difficult time in my life. But, I really feel like I need to move on. I'm through with treatments, I'm through with surgeries. I'm through. And, I need to get into shape, and get healthy again. My body has been through such a lot, and I've gained weight, and I feel awful. But, I know that if I can start exercising, gain some muscle, lose some weight, and start feeling healthy, I can put this whole thing behind me.

I still want to support those who are going through breast cancer right now. I won't shut the blog down - there's some stuff here that will hopefully help someone - but I just won't really be posting new stuff. Right now I'm juggling about 6 blogs, and I need to cut back.

My cancer journey is over - my journey to good health is just beginning. It's a daunting task, but I know I can do it. I've started a new blog to track my journey back to good health - http://ourroadtohealthy.blogspot.com/
I'd love to have you visit. If you are embarking on the same journey as me right now, you can become a contributor on that blog. Just contact me and let me know. (nafari01@yahoo.com)

I hope that this blog has helped someone out there. Breast cancer is a monster that no one should have to deal with. Good luck, and take care.

Here's My Port

Last week I had my last surgery on my reconstructed chest. I also had my port taken out. When I talked to the nurse about taking the port out, I asked him if I could keep it and take it home. He looked at me like I was crazy, and then said, "I guess, if you want to you can." I told him I wanted to photograph it and blog about it and he just laughed! So, they cleaned it all up, put it in a cup with alcohol, and sent it home. I forgot about it for about a week, then asked Rick where is was - it was still in the cup. When I opened lid, the smell of alcohol just about sent me over the edge - that smell has way too many memories for me! Anyway, I here are the pictures of the port if you are interested in what it is. It's metal, so a little bit heavy. They sew it to a muscle and then, because it stays in there so long (in my case, over a year), stuff grows around it. I couldn't figure out why it hurt so bad after the port was taken out. It still is very sore. My doctor told me how he had to basically dig it out. Ouch!! No wonder it's sore.

I think it's funny how it's shaped like a heart. It's all metal except that little circle in the middle. That's where the nurse would stick the needle to give me chemo, take my blood, give me other medicines, or access for an IV for surgery.

See those 3 little nobs on the top? The nurse would feel through my skin for those three little nobs, and then, when she found them, she'd stick the needle in the middle. You'd think it would be easy, but it's pretty tough to find those sometimes.


It's not very big, right? I was so happy that I had a port. Because I had lymph nodes taken from my left side, there can be no sticks on that arm. So, they had to use either a port, or my right arm. For some unknown reason, the veins in my right arm SUCK! No one can find them. It took them 8 tries - 8 TRIES - to find a vein for my mastectomy surgery (before I had a port). They finally, after torturing me by jabbing a huge needle into my arm, hand, wrist, etc., decided to put me to sleep before they finally put an IV in. From then on, I was able to have my port accessed for any surgeries or tests I had to have.

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.

Last Reconstructive Surgery

Today is the 2nd day of my recovery from my last surgery. This time we just tried to fix the look of the reconstruction. The right side was more rounded on top and a little higher, so the left side needed to be lifted a little bit. The doctor cut open the breast and took the implant out - then he sutured the muscle underneath, which lifted the breast - then he put the implant back in. I can tell that the top is rounded now - like the right side. The only thing that doesn't look great is that the nipple is now much more lopsided that before. I was hoping that by lifting the breast, the nipples would match up, but it doesn't look like that happened. Bummer. Plus, the suture line is really deep - so it looks kind of weird. I know I shouldn't judge for a long time - there's swelling and the breast will relax at some point, so I need to just mellow out for awhile. The doctor also took my port out (right side, above the breast). I'm really happy about that, but the pain is super bad right now. I don't know why it's hurting so much. In fact, both surgery sites are killing me. I'm sure it will gradually get feeling better, but right now it's awful. I'm taking Percocet - which does help with the pain, but makes me itch all over.

I'm glad it's over - I'm ready to be done with this whole thing. Even if the breasts don't look exactly like I want them to, I'm done. I just have to have the tattooing done. I'm hoping that everything will be over by the end of the year.

Gotta go lie down now...

A New Group of Women...

Last Tuesday I went to the support group at the cancer center for the first time. I'm not sure why I haven't taken advantage of this before now. It's weird, really, that I've waited until right after my last treatment to start going. Hmmm. Well, I had a good time, met lots of wonderful women who are in all stages of their cancer journeys - from diagnosis to several year survivors. In a way it was hard, because it's always hard to hear about other people who have been touched by this terrible disease. Especially those who are on their second round with cancer. This is a scary thing to me. I don't ever want to have to do this whole thing again - and yet, that thought is always in the back of my mind.

One of the women in the group brought a gift for everyone. Her dentist bought, and had sent to her, several copies of a book she read in his office. I wish I had my copy here with me (I'm on vacation and the book is at home) - it's an inspirational book with lots of wonderful pictures, stories, and quotes. It was a beautiful gesture - this giving of something that touched her. I'm so glad I got a copy. I plan on sharing things from the book with you, my dear followers of this blog.

Shelly - the social worker at the cancer center - is the one who hosts this support group, and I'm really glad I met her. Early on in my chemo, she introduced herself to me and encouraged me to write about my cancer journey. It was about 2 week later that I started this blog. It has been a wonderful, therapeutic thing - writing.

I'm really glad I met all of these wonderful women. I pray that God will bless every one of them in their struggles to overcome the beast.

Celebration Time...

Today was my LAST treatment at the cancer center. I finished chemo in February, but have had to keep going back every three weeks since then to get treatments of Herceptin. After having my blood work done, and everything measured... weight, blood pressure, etc.... my doctor came in the room with a big grin on his face. He was so excited that this was the end. He examined me, and asked if there had been any changes in the last 3 months since I'd seen him. I told him that my back has been hurting - same place every time - and it was bothering me and had me worried. He ordered a bone scan to check things out. I'll have that in a few weeks. He also said that I needed to go see a skin doctor, because several moles on my back have him concerned. So we set up both of those appointments.

I went into the chemo room, and the nurses hooked up the Herceptin drip to my IV. It took about an hour. I looked up and watched as the IV drip slowed down and then as the last drop fell. I just started bawling - I was very emotional for some reason. Then, tears were streaming as the nurse Maryann, pulled my IV out of my chest for the last time. I just can't describe the feelings that I had. It was such a sense of accomplishment, and relief. And I'm kind of sad to not be a regular and see all those wonderful nurses, but I'll live without it.

It's such an incredible day! I wanted to celebrate, but there was no one to celebrate with, so I took myself out to lunch at the Paradise Cafe - I had a yummy veggie salad, with cranberries and feta cheese.

I've been waiting to say this for 15 months...
I KICKED CANCER'S BUTT! BOOYA!

Life is sweet! :-)

Happy Halloween...

Happy Halloween!!

Last year my halloween wasn't very happy. This is how I looked on Halloween - 2 weeks after my bi-lateral mastectomy...

This is how I felt...

(picture courtesy of my son, Michael)

This year I'm feeling much better, and just really happy to be alive!!!!

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!

WORDLESS WEDNESDAY - My Family at the Cancer Walk

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

Check out my blog, INCREDIBLE WOMEN, this week - we've gone PINK for Breast Cancer Awareness Month. I'm featuring many of the nurses who helped me in the chemo unit during my treatments, and I'm also featuring many breast cancer survivors.

Self Exam

Today's the day to do your breast self exam!

Get into the habit once a month. It could save your life!

Breast cancer sucks. You DON'T want to find out how much.

1 year Anniversay of Bilateral Mastectomy

Well, I've kind of been waiting to write this post for awhile. Today is the one year anniversary of my bilateral mastectomy. I can't really believe it's been a whole year. That seems hard to fathom. I've never written about my mastectomy - it's just not something I could write about. But, now I think I should. I've forgotten some of it - maybe because I haven't written about it for a year, or maybe because my mind just doesn't want to deal with remembering the worst day of my life. I asked Rick to help me remember what happened, but he says he doesn't remember much - which is weird, because he never forgets anything. Hmmmm. Maybe it was his worst day, too. Here's what I do remember...

Rick and I went to the hospital around 9:00 am. After I checked in, Rick and I sat in the waiting room. Rick was holding on tight to my arm. I asked him why. He said that he was afraid that if he didn't hold on to me, I'd run out the exit. Which was probably true. He asked if I had my red lipstick. (I had just finished reading "Why I Wore Lipstick To My Mastectomy" and she had worn red lipstick for hers). I was sad because I only had pink lipstick. I remember that they were behind for some reason that morning, and things were delayed for awhile. Nothing like dragging it out, huh? The nurse took me back and told me to undress and put a hospital gown on. I do remember how I felt as I took off my bra for the last time. I swallowed a big lump in my throat, and thought, "This is the last time I'm going to wear a bra." After I was settled in the pre-op waiting area, my parents came in to visit me. I took one look at them and started crying. I remember my dad hugging me and telling me that he was so sorry. We talked for awhile. Then, they went out to the waiting room, and Rick and I were alone. I wrote in my journal for awhile. It was my first entry in that journal. I think I'll share here what I wrote:

"I have cancer. I was diagnosed two months ago - August 20, 2008. I haven't wanted to write it down. I've been in kind of a denial, but as of today, there will be no more denials. In 1/2 hour, I'm having a bilateral mastectomy. Yep, they are cutting off both breasts. It's been a tough decision - one I had to make myself. No doctor wanted to be the one to say, "Yes, we have to do it." Right now I just want to write down how I feel about this. I'm so scared. I'm scared to go to sleep. I'm scared to wake up. I'm scared of what I'll look like. I'm scared they'll make me go home too soon. I'm scared to take care of the drains. I'm scared of starting chemo. I'm scared of the chemo cocktail and what it will do to me. I'm scared of losing my hair. I'm scared of the IV they are trying to put in right now - they can't find a vein. This is going to hurt. I just took my bra off for the last time. Because I'll have expanders inside and no nipples, I won't need to wear one. I'm so scared."

So, that's what I wrote about 1/2 before I went in for surgery. And no, they couldn't find a vein. They tried quite a few times, and I was so upset, that they finally said they would put me to sleep in the operating room before they put an IV in. Surgery time came and Rick gave me a hug. They wheeled me back, and the closer I got to the surgery room, the more I started to panic. It felt like I couldn't breathe. We entered the room, and people were all around me. They said they would put a mask over my face and I'd go to sleep. I saw them playing around with the mask, and I just started to cry, uncontrollably. I couldn't breath, and I was trying to get off of the table. I felt like running away as fast as I could. Who the hell cares about the cancer. I CANNOT do this. The nurse grabbed me and helped me lie back down. I must have look very frightened, because she asked me what was wrong. ??!!!! Um, I'm getting my chest cut off! What do you mean, what's wrong?! I told her I was scared. She asked me if I was scared of going to sleep, and I said, "No, I'm scared of waking up." She put her arms around me and gave me a hug, the mask went on my face, and that's the last thing I remember. My parents told me that it took about 4-5 hours. I do know that two doctors operated on me that day - first the surgeon removed all of the breast tissue. And then, the plastic surgeon put expanders in and closed the wounds. I don't remember much about when I woke up. I guess my parents came in to see me, but I don't remember that. I was pretty drugged up and the pain was awful. I had drains in and a pain pump with morphine. My kids came to see me and I'm sure others did too, but everything is a blur. All I can remember for the first couple of days, is pain. I ended up staying in the hospital for 5 days. The pain was bad, and I was draining tons of fluid. I remember how awful it felt to look down and realize that I had no boobs anymore. I don't even know how to describe that. There are no words for that.

Well, that's about all I can write for now. I'll describe the recovery later. And, of course, that terrible moment when the bandages came off, but not now. This is enough for now.

Just Gotta Get This off of My Chest...

I want my real boobs back. I am so tired of fake boobs.
I hate that I can't ever forget that I have fake boobs.
I hate that they are perfectly round.
I hate looking at myself in the mirror every day.
I hate how ugly the scars are.
I hate that I can't ever sleep on my stomach.
I hate that I don't sleep well, because I have to keep turning over because my chest hurts and is uncomfortable.
I hate that bras are so uncomfortable to wear.
I hate that I have to wear a bra.
I HATE that I can't feel anything when my husband touches me.
I hate how numb my chest is - and it's NEVER going to get better. Ever!
I hate boobs. I can't believe mine tried to kill me. Is it because I was never happy with them? To think that I've always wanted a boob job! I just want my real boobs back.
GAW!!!

Needle Drama

My youngest son, Matthew, had surgery on both of his feet this morning. I was a little nervous about going back to the hospital where I had my mastectomy. I haven't been back there since that surgery- it's been 1 year, minus 4 days. But, things were ok until we got ready to go home. We were in the recovery room, and the nurse went to remove his IV, and as soon as she removed the bandage and I saw that IV, I got the sickest feeling in my stomach. I got an instant hot flash, and really had to concentrate to not pass out. It's like I had absolutely no control over how I reacted. I guess I can understand why that would happen - there have been so many surgeries for me this past year, and all of that chemo - which all relates to IV needles. My mind and body were just reacting to that.

I wonder how long it will be before I can see an IV needle without getting sick and panicky.

My Fight with the Beast is nearing the end...

My cancer journey is coming to an end soon. I have two more Herceptin treatments and then I'm done at the cancer center, except for checkups. I'm not sure how I feel about that. One of my friends who went through chemo treatments can't even go anywhere near the cancer center. When she does, she gets sick to her stomach. But, I've been going there for almost a whole year now. I know the nurses - they are happy to see me. And the Herceptin doesn't really bother me - not like the chemo. But, it will be nice to not have to drive to the cancer center.

I'm almost done with the reconstruction of my chess as well. That's been a difficult journey. I've had 3 surgeries on my chest so far. One was the big one - the bi-lateral mastectomy. I'll be writing about that soon. Quite a hard surgery. Then, 8 months later I had the reconstructive surgery, and a couple months ago, I had one more to even things out a bit and fix a scar. But, as I stand looking in the mirror, I think my left side is lower than my right side. So, I'm going back under the knife again. I asked Dr. Bishop if I was just being picky. He said, "Kara, you've lost alot and been through alot. If I can make them look perfect, then I will. I'll let you know if I can't fix things, but right now, I can." That made my feel so much better. Great doctors make all the difference. After that surgery in November, I'll wait 6 weeks, and then do something I thought I'd never do... get tattoos on my chest. They'll tattoo the color on. Crazy, huh? What do you think - should I get a breast cancer ribbon tattooed on my chest to celebrate the end of all this crap? Leave a comment and let me know!

BREAST CANCER AWARENESS MONTH

CHECK IT OUT... The month of October is Breast Cancer Awareness month. Try to do something during this month to help the fight. Here are 10 suggestions...

1. Find a local breast cancer walk and join it. On October 10th, there is a walk in Liberty Park in Salt Lake City that I'm going to try to go to. Why don't you join me??? http://main.acsevents.org/site/TR/MakingStridesAgainstBreastCancer/MSABCFY10GreatWest?pg=entry&fr_id=19868 You can sign up as a team or as an individual walker. Don't forget to make a donation!

2. Do a self exam. Go to the self exam button on the sidebar of this blog. This will give you directions on how to do your self exam. On the 15th of every month, I do a post on this blog reminding you to do your self-exam. It's important.

3. Schedule your mammogram (once a year - October is a great time). There is a button on the sidebar of this blog that you can click once a day - this is easy to do and it provides a free mammogram to those women who can't afford it. Cool, huh? So visit each day to help out. If you'd like to go straight to The Breast Cancer Site where they do this, click here http://www.thebreastcancersite.com/clickToGive/home.faces?siteId=2&ThirdPartyClicks=BCS_linktous_120_01

4. Help a friend who is going through cancer. A few tips. Just offer your help - don't try to say "I know it must be hard", or "I know how you feel". Unless you've been in that exact spot, you'd don't know. So, just help. Bring dinner. Send flowers. Show up and do some laundry, or help clean. Send a note. Anything is appreciated. Believe me, there are days when you just can't even get out of bed, so any help is great. Call first. :-)

5. Donate money to help find a cure. Tina, over at Blogging For Boobs Bash, is raising money for breast cancer research - she will be featuring survivor stories on her blog all month. I'll be there at some point. Go and take a look. http://talkinwithteenie.blogspot.com/search/label/blogging%20for%20boobs%20breast%20bash She's doing lots of give-aways this month as well.

6. If you are a survivor, find someone to mentor - answer their questions, lend them your scarves and hats, etc. There are lots of online communities that you can join to share your story - one I belong to is Wellsphere. I'm in the Breast Cancer community there. Check it out... http://www.wellsphere.com/home.s

7. Be aware! Don't bury your head in the sand and hope breast cancer doesn't come your way. Some statistics:
An estimated 192,370 U.S. women will be diagnosed with breast cancer in 2009- that's about 528 per day, 22 per hour - one woman every 3 minutes!
An estimated 40,170 women will die of breast cancer in 2009 - that's 110 per day!
The median age at breast cancer diagnosis in the United States was 61 years. This means that half the women diagnosed with breast cancer are under the age of 61 - I was 42.
An estimated 2.5 million women living in the United States have a history of breast cancer.
So take care of yourself and make sure the women in your life - mothers, sisters, friends, aunts, cousins - everyone - takes care of themselves.

8. Spread the word about breast cancer - talk to everyone. The internet is a powerful tool - use email, facebook, twitter, blogs - whatever you can think of to spread the word about the importance of early detection in breast cancer.

9. Know your family health history. This is something I need to work on. It changes all the time. You should be aware of the health problems (especially stuff like heart disease, high blood pressure, diabetes, and cancer) of your siblings, parents, and grandparents. When you go to see a doctor, they'll want to know about your history and it really is important.

10. Keep "abreast" of Breast Cancer. Research for Breast Cancer is making huge strides. Gain some knowledge - read books, search the internet, etc. Become an expert. It could help you or someone you know!

Breast cancer SUCKS. You DO NOT want to find out how much. Believe me.

Take Care Everyone! Love you all. Thanks so much for helping me through this last year - you were all wonderful. MMMMWWWWWAAAAA!

Hair Today - Gone Tomorrow... Back Again Today!

Today was a great day. I actually called my hair stylist, Aimee, and went in to see her. My hair was just barely long enough to style!!!!!! WOOHOO!!!!! Aimee took a tiny bit of hair off - just to even things out. Then she put some mousse on it and blow-dried it. Then she used some pomade. Mmmmmm!!! It was absolutely heavenly to be in the salon, having someone do my hair. 4 months ago I was bald! Now I have hair. Life is GOOD!

Here are a few pics of my new hairstyle... (ignore the double chin please - Aimee couldn't do anything about that)

I Find Out - I HAVE CANCER...

After I had a needle-guided biopsy, the waiting began. Don't you hate it when the results from tests take FOREVER?! The waiting was hard. I just wanted to know. I felt like the world should just stop and hold it's breath until my results came in. I mean, how long could it possibly take to check for cancer?! I called the surgeon's office on Monday and Tuesday, asking if the results were back. He gently explained that it was a complicated thing they had to do - first they had to dye the tissue, then they had to slice it up - like slicing bread - and then they had to test each tiny piece to make sure we got everything. If any little bit of the DCIS was touching the dyed area, then the "borders" wouldn't be clear and we'd have to go back in and take more out.

So, I tried to be patient. I went to work on Wednesday, and it was hard to concentrate. By early afternoon, I figured another day had gone by without results. As my boss, and friend, Carol, was walking out the door at around 3:15 pm, my cell phone rang. She hesitated, and I looked at the caller ID. "It's the surgeon's office." Carol came back in as I answered the phone. It was Dr. Robinson. He said, "Kara, we got the results of your biopsy back. (Right then, I figured it had to be negative, because why would he tell me I have cancer over the phone?!). "You've got two kinds of breast cancer." Just like that. A simple statement. You've got cancer.

How many people have heard those terrible, frightening words? I bet every one of you who has heard those words remembers where you were when you heard them. It's not something that I ever thought I'd hear. I looked at Carol, and nodded. She sank down on the sofa. I somehow found myself sitting down in my chair. I continued to just listen...

"You've got two kinds of cancer. One is non-invasive. It's the Ductal Carcinoma In Situ that we talked about. But, as they were slicing the tissue open, they found a small tumor. That is invasive. This changes things."
"How?"
"Well, we'll need to check the surrounding tissue - especially check the lymph nodes to see if it has spread... blah, blah, blah..."
... and I was sucked into the world of cancer speak. Another biospy. Didn't get it all. Sentinal lymph node dissection. Possibly chemo. Maybe mastectomy (ok, I didn't hear that - I just thought it). The surgeon tried to explain where we needed to go from there. It was hard to listen and comprehend. I look at Carol the whole time. It's like she kept me grounded. If she wouldn't have been there, I couldn't have held it together. I calmly made an appointment to see the surgeon again. Then, I hung up the phone.

"Kara, I'm so sorry." Carol was in tears. Her mom had died from breast cancer. I realized then what awful news this was for her to hear. And then she said, "Shantel and I just knew it would be positive." Huh?!
"What do you mean, you knew?"
"We just felt like there was a huge change coming for you - that the test results would be positive." Huh. Ok.

Carol went home, and I got into my car to head to an appointment I had. Again, I thought the world would just stop and hold it's breath for a minute. But, nothing like that happened. I called my husband. Here's how the conversation went...

"Hi, what's up?"
"Well, I got the results from the biopsy back."
"Yeah?"
"I've got two kinds of breast cancer." Pause.
"What?" I repeat myself.
"No."
"Yes, yes I do."
"No you don't. Who told you that?"

Isn't it just maddening when someone won't believe you. Did he think I was making it up?!

"Yes, Rick, I just talked to the surgeon. He found the DCIS, which is non-invasive, but they also found a tumor that didn't show up on the mammogram. That's invasive. I have breast cancer." Another long pause.

You see, neither Rick nor I thought for even one second that the test results would be positive. Neither one of us saw this coming. It just kind of hit us like a brick wall.
"I'm so sorry, Kara. Do you want me to come home right now? I don't want you to be alone." Sweet.
"Nope, I'm going to get my nails done."
"What?! No - you can't do that."
"Look, I need NORMAL! I need to do something normal right now. I can't just sit and think about this. I'll go crazy."

We finished our conversation, and I headed to get my nails done. On the way, I called my mom and my sister. My mom was calm and reassuring. My sister was hysterical - for a minute - and then she calmed down. You see, she had just lost her sister-in-law to breast cancer a few month earlier. What a nightmare. I found out much later that my mother had hung up the phone and collapsed on the floor. Into a fetal position. My dad couldn't get her up. She just lay there, sobbing. I'm glad I didn't know that at the time. I needed my mom's strength. She never showed anything but a positive, fighting attitude when she was around me.

When I got home, I had the very unpleasant task of telling my children. My oldest was off serving an LDS mission in Japan - he'd been gone for almost a year and a half. I called the mission home and talked to the president of the mission. (you can't just call and talk to you son - it's not allowed). The president told me to write a letter to Grant and mail it asap. He would personally give it to Grant and be there to talk to him. So, I sat down and wrote the letter. It was a hard one to write - I mean, what do you say? I tried to be upbeat and positive... Everything was going to be fine - don't worry. Forget about me and yourself, and burying yourself in the work - Heavenly Father will take care of things, etc.

(His reaction to the letter? He emailed me - "I knew you would have cancer. I just had a feeling when you told me you had been sick that you'd have cancer." Funny thing - after my previous email told him that I wasn't feeling well and was having tests done, he emailed me back and said, "Well, don't get cancer! HAHA!" Yeah. Then, the next thing he knows, he gets a letter telling him I have cancer!)

Then, I had to tell my 18 year old. His reaction? "Yeah, I knew this was going to happen." Again, HUH?! He said, "It's going to be ok, Mom."

Then I told my 14 year old. "What? What does that mean?" He was worried. But I reassured him.

Then, last of all, I told my 11 year old. "Matthew, remember the surgery I had? Well, the doctor called and he said that I have breast cancer." "That sucks. What does it mean?" "It's ok. I have a really good doctor, and he is going to make me better. I'll be sick for awhile, and probably have another surgery, but I'll be fine after that. Ok?" "Ok." And then he went back to playing his video game. I loved his reaction the best.

I don't blame anyone for reacting the way they did - denying, crying, questioning, etc. What would you do? You hear this awful thing and it's hard to cover up that first reaction. Anyway, the weird thing about that day was what came out of everyone's mouths: "I knew it. We knew the test results would be positive." Every person, except me and Rick, KNEW I'd have breast cancer. Even my kids. The only explanation I could come up with... Heavenly Father prepared every one of them to hear that news. He prepared them! He helped them deal with it. I'm so glad that happened.

It was a hard day - possibly the hardest one to that point. And I had NO IDEA what was coming. But, I knew I had the love and support of every person around me.

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.

Self Exam

Today's the day to do your breast self exam!

Get into the habit once a month. It could save your life!

Breast cancer sucks. You DON'T want to find out how much.

Really? Another surgery?

Boys... (my sons), if you are reading this, I'm going to talk about the "B" word again, so you might want to go read something else!

On August 25th, I went to see my plastic surgeon, Dr. Bishop, to do a post-surgery checkup. I've spent the last month pushing down on the right implant, trying to get it to go down and be even with the left one. But, it hasn't moved yet. Darn it. So, we are going to keep pushing on it for another 4 weeks. If it still doesn't move, then I've got a decision to make. It's really not that bad - the middle of the breasts (nipple reconstruction) is only about a finger width difference. But, um, you can tell they are kind of lopsided. Oh, and the right one is rounded up higher than the left one. It looks fine in a bra, but not without one. You might think I'm just being too picky. At least I have them, for crying out loud! You are right. I am being picky. But, here's the thing... I know my doctor can fix it. And I don't WANT to go around lop-sided. It's as simple as that. If I have to have fake boobs, I want them to look good.

So, Dr. B (not the same as my oncologist, Dr. B) asked me which one I like better. Hahahahaha! I told him I like the right one better. He said that if it didn't go down to match the left one in a month, then I'd go back in for another surgery - this time he'd make a cut into the side of my left "boob" and pull the implant out. Then he'd go in and suture the muscle underneath where the implant goes, then he'd put the implant back in. That should make both sides look even. Then, when I'm finally healed, I'll have the tatooing - putting color on the nipple area. No one really wants me to go in for another surgery (this will be by seventh), but THEY don't have to live with crooked boobs. So, they don't get to make that decision - I do. :-)

Herceptin - the wonder drug.

It's been awhile since I've posted. I'm still trying to come to terms with the fact that it's been a year since I started this journey. I've read through my last post a few times, and it hits me the same every time! I can't stop crying when I read about everything I've been through. I wish it was over, but it's not. I'm still getting Herceptin every 3 weeks.

Herceptin is a miracle drug. I started it when I started chemo. It's an antibody drug used in the treatment of breast cancer in women with HER2 tumors. HER2 = human epidermal growth factors receptor 2. Wow, that's a mouth full! The HER2 protein is a genetic defect found in some tumors. This protein causes a tumor to be more aggressive. My doctor explained that it causes cancer to become a super cancer - the growth rate of tumors with HER2 is accelerated. He told me that before Herceptin was developed, women with HER2 were dying in early stages of cancer, because nothing would work to block the HER2. Dr. B had a cool way of explaining chemo and herceptin. He said that the chemo goes into your body like a bomb - it just explodes and goes everywhere. That's why, not only does it kills the cancer, it "kills" other healthy things, like your hair, nails, inside of your mouth and down your throat, etc. Herceptin, on the other hand, goes into your body like a missile - straight to the HER2 protein and kills it. So, the great thing about Herceptin is that there are very few side effects. Unlike chemo, Herceptin doesn't hurt the healthy parts of your body. Oh, except for your heart. Yep. It's funny - I'm sitting here reading an information page that I got from the chemo center about Herceptin, and nowhere does it say it can damage your heart! Here's what it says...

The drug is given by IV, and during administration of the drug there is a chance you may experience sweating, chills, and possibly fever. ALSO, Herceptin can possibly cause: nausea and vomiting, abdominal pain and diarrhea, headache and fatigue, tremors, insomnia, and lowered white blood count with increased potential for infections. I really wish I would have read this BEFORE now. I've been on Herceptin for almost a year and I thought I would have NO side effects. So, I've always thought it was weird that every time I get a Herceptin treatment, I get a headache. And I feel kind of yucky - like I'm getting the flu. It doesn't last long, and is NOTHING like chemo, but still... it would have been nice to know that was normal. Geez!

Now, about the heart thing. My doctor has been doing these scans called MUGA scans. They are pretty cool. A MUGA scan is performed by taking some of my blood and attaching a radioactive substance to the red blood cells. Then they inject the red blood cells back into my bloodstream. Then they put me under a special camera (a gamma camera), which is able to detect the low-level radiation being given off by the red cells. Since the red blood cells (including those that are radio-labelled) fill the cardiac chambers, the image produced by the gamma camera is essentially an outline of those chambers. With some fancy computer manipulation, the final product is a movie of the heart beating. (Wow, I sound pretty smart! I'm not - I just googled MUGA scan.) I've had 3 of these (I think). My cancer doc has been watching my heart carefully for the past year. So, last week, when I went to get my Herceptin treatment, he read the results from the latest scan. He was concerned because my heart function (pumping blood) had dropped quite a bit. He explained that if our hearts pumped perfectly, they would pump 100% of the blood out each time they pumped, but they aren't perfect. So, "normal" for our hearts is 50-75%. My first few scans had me at 61%. This last scan was 51%. Hm. So, Dr. B wouldn't give me Herceptin until I had a Cardio MRI. So, last Friday, I had one. I'll have to write another post describing that - right now I can't talk about it. I'm still feeling claustrophobic! Anyway, yesterday I went back to the cancer center and found out that my percentage had gone up to 59% and I was given the go-ahead to have another Herceptin treatment. I guess that's a good thing. I only have about 3 more treatments total, so it looks like I'll get to finish a full course of Herceptin. Yay for me.

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.

Self Exam

Today's the day to do your breast self exam!

Get into the habit once a month. It could save your life!

Breast cancer sucks. You DON'T want to find out how much.

Sisters

I love this picture of me and my sister, walking at the Relay For Life cancer walk last week...

A New Breast Cancer Blog

This morning I received an email from a friend of a friend who is going through her second round of breast cancer. She is a motivational speaker and has a wonderful blog www.learningfromlynn.blogspot.com. As I visited the blog and read through some of her posts, I was, once again, reminded of all of the incredible women I know. I'm so glad she emailed me. What a blessing it will be in my life to have this blog to read. The thing that stands out about Lynn's blog is that it is a motivational blog - it really is! It seems no matter what Lynn is going through, she makes sure to end her post with something motivational for the reader. I know that this breast cancer blog (mine) is much more a reality blog (not that hers isn't), and I can see now that I should start to put more helpful, supportive comments into my posts. Not only will that probably help my readers more, but it will give me those much needed happy thoughts.

I'll try harder to be more uplifting in my posts from now on. Thanks Lynn!

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.

Wake Up!!

Wow. The nerves that have been damaged across my chest - making my chest numb - have started to WAKE UP! Man, I had NO idea how blessed I am to have a numb chest until this started yesterday. It comes and goes. It feels like little knives stabbing me in random places. Can you imagine how I would feel if my chest wasn't mostly numb? I'd probably be hooked on painkillers by this time. Yeah. Wonder if it will ever go away? I hope so. It wears me out, dealing with pain like this. By the end of the day I just want to go to sleepy land, where little stabbing knives can't touch me.

Sorry about the last 3 posts

I'm trying to get my new blog button and signature set up. I'm just checking to see if the signature worked. No more stupid, pointless posts - I promise!

My New Blog Signature

My Cancer Blog Button...

I'm a HealthBlogger for Wellsphere...

I was just asked to be HealthBlogger for the Breast Cancer Community at Wellsphere. They will be taking some of my posts from this blog and sharing them there. I'm happy that I'll be able to maybe help someone with their breast cancer journey. They get over 4 million visitors every month, so hopefully more people will be able to read my blog and get help. My number one goal when I started this blog was to get the word out about breast cancer. Since then, it's become an important part of my healing. I'm not sure how successful I've been at helping women learn about breast cancer so far, but if even one woman becomes more aware because of me, then I'll be happy.

Relay For Life Cancer Walk 2009

Last night my family participated in the Relay For Life Cancer Walk here in Syracuse Utah. This is the 3rd time we've done this, but my first time as a cancer survivor. This is somewhat of a family reunion for us - many of my cousins where there with their families, my aunts and uncles, and my parents. We started going to this walk after my cousin, Wendy, was diagnosed with breast cancer 3 years ago. This year, Wendy and I walked, along with my mom (who has skin cancer), and two of my cousins (who have cervical cancer). 5 survivors!!! Here are some of the pictures from last night...

My mom, my sister, and me at the starting line.

Wendy gives her sister Tina a high-five!

An emotional moment - it's been a LONG year for me.

Our care givers met us halfway around the survivors' lap - there is my sister and my dad (who met my mom)

The banner I made - 'The Beauty Remains' was our team name.

Five survivors - Cousins, Jen and Sara, my mom Barbara, me, and cousin, Wendy - we meet up with our team to take a lap around the track.

Our team walking the lap after the survivors lap - look at everyone who came out to support us!

My sons are walking behind me.




At 10:00 pm, we decorate and then light luminaries - for the survivors and those who have died from cancer. Here are the luminaries for me, Wendy, my grandpa, and the son of some good friends of my parents.

This was kind of a personal victory for me. I'm so thankful my family was there to share it with me (my husband and son, Michael, didn't make it for the survivors laps, but came a little later). Cancer SUCKS!