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 Breast Cancer Support Group in Utah County... Sister Survivors

For anyone who still reads this blog (sorry about the lack of posting), here is the new blog for our breast cancer support group... Sister Survivors (it's what I've been working on instead of this blog):

SisterSurvivors

That blog is updated daily - Monday through Saturday. Here is the schedule...

Monday Memoirs - writing through cancer is very therapeutic. Each Monday we'll post a question for you to think and write about. So, grab a beautiful journal and a pretty pen, and let your thoughts spill out.

Tuesday Tidings - we all want to know the "latest" news on the breast cancer front. On Tuesdays, we'll post something about research and development, or things you can do to stay healthy, or even just suggestions for getting through treatment.

Wordless Wednesday - the posts on Wednesdays will be photos. What inspires you? A cancer patient's smile, a beautiful summer morning, a new nail polish color? We'll find a picture of something beautiful to look at, and give you a treat every Wednesday morning. Want to add to the fun? Email a photo to us at sistersurvivors@gmail.com

Thursday Thoughts - This will be a day for sharing our thoughts about cancer, strength, faith, sisterhood... anything that gets us thinking and will help others. We'd love to hear your thoughts about the post, so speak up in the comments section.

Friday Fare - This is our healthy recipe day - guest blogger, Shannon Stahura, will share a yummy recipe with us each week. Shannon does a lot of research to find the best, most healthy foods to use in these recipes.

Saturday Strength - Physical exercise is so important in reaching and maintaining a healthy lifestyle. Exercise is also important in healing. Look for an exercise tip here each Saturday.

It is my hope that this blog will become a place where breast cancer survivors can come together, learn things, and discuss things. I'm hoping to figure out how to put a discussion feature on the blog soon.

The new survivor group is going well, I think. We've had two meetings so far. We've had about 31 survivors show up to these meetings. After all the hard work we've done to get this up and running, it's nice to see that it will be of some benefit to others. I love the other two survivors on the board - Bethanie Newby and Colette Harris. I hope you'll take a minute to visit the group's blog.

Have a great day.

New Breast Cancer Support Group BLOG - A Test

I've done a TEST blog for our new breast cancer support group. I'm using the name "The Beauty Remains" for right now, until we come up with a name.

Take a look at the blog, and leave a comment - tell me what you like, what you don't like, If there is something that is missing that you think needs to be there, let me know.

http://beautyremainsbreastcancergroup.blogspot.com

Thanks, and enjoy!

The Beauty Remains

I've been thinking about a name for our new breast cancer support group. Maybe we can use the name I used for my group that walked in the cancer walk last August. I fell in love with this quote by Anne Frank, and used part of it for our name. The name was "The Beauty Remains". Here is Anne Frank's quote:

"I don't think of all the misery, but of the beauty that still remains."

A few other quotes that use this same idea:

"...when the darkness sets in... true beauty is revealed only if there is a light from within." -Elisabeth Kubler-Ross

"The pain passes, but the beauty remains." -Pierre-Auguste Renoir

The more I think about it, the more I love this name. Wonder what everyone else will think? Here is the picture of the poster I made for our walk...

New Breast Cancer Support Group

Yesterday I went to the first meeting of a breast cancer support group that my plastic surgeon is forming. It was a nice surprise to meet another BC survivor - Collette. I talked to her before her reconstruction a few week ago. I didn't know she was going to be there, and so it was fun to meet her. She looks great. I remember seeing another patient in Dr. B's office after her reconstruction (before mine), and I couldn't believe how well she was doing just 5 days after the surgery. Really, you wouldn't think that you'd feel ok that soon after having your chest cut open, but compared to the mastectomy, the reconstruction wasn't that bad.

Anyway, I digress. We talked about what name we wanted for the group, what our goals are going to be, where we can meet, how to get everything done, etc. It was so exciting. I've been looking for a way to "give back" to those who helped me, and to make a difference and help other women going through breast cancer. This is it! When I told Rick about it, he wasn't quite as excited as me - he knows how busy I am, and doesn't think I can add anything else to my schedule. But, it will be ok. This is important to me. After I told him everything we had discussed at the meeting, he seemed happy that I had found what I've been looking for.

I'm especially excited about the mentoring program we talked about, and the blog we are planning. That's what I'd love to work on.

As soon as everything is set up, I'll let you know. It's mostly for women here in Utah County, but the blog/website will be for anyone. If you have any suggestions for information to put on the blog, let me know.

Stitches Out

Today I got my stitches out. There was an atmosphere of partying when this happened - granted, it was caused by me and my sister... but, the women in the office were happy for me. I think the re-placement of the left nipple was the right thing to do. It looks much better and is in the correct place now. Now I don't have to worry about not wearing a bra this summer - if I don't, it won't look funny.

Last thing on the agenda... in about 6 weeks, I'll have the tattooing done. I'm planning on bringing my sis, mom, and some friends (LoriAnne, and possibly Leslie). We are going to have a party while I'm being tattooed!

The end is in site!

One last little surgery

Tomorrow I'll be at my plastic surgeon's office to do one last small little surgery. I've felt for some time, that the nipple that was reconstructed on the left breast was in the wrong place. Really, it is in the center of the breast, but that breast is shifted a little bit to the left, so it looks off center when I look straight at it. My doctor wants me to be happy with how I look, so he is going to try to move the left reconstructed nipple about 1/2 inch toward the middle of my chest. He has to be careful to not cut over the top because that's where the blood supply is. He's just going to cut around it, and then shift it over a little bit. It shouldn't hurt, because I'm pretty much numb through that area. As soon as I'm healed - about 6 weeks from now - I'll finally be having the tattooing. Then I'll be done.

I'm happy that it's almost completely over.

Fickle Feelings

There are mornings, like this morning, when I get out of bed and just HATE my new boobs - they are big and heavy and ugly. And then, there are days when I stand in front of the mirror and MARVEL (and feel very thankful) at the talent and abilities of my plastic surgeon. That I even HAVE boobs is a. maze. ing. Can you say "Fickle"?! I knew ya could.

3-Month Checkup

Today I had my 3-month check up.

My vitals: Blood pressure was 122/82, heartrate was 78, and o2 saturation was 98.
Doc asked me how I felt - if I was finally getting over my year with chemo. I told him that around the middle of December, I started feeling so much better. Sure, I still get really tired, but I'm able to do SO much more than I have for the last year and a half. No unexplained aches or pains in weird places. No swelling at the ankles. He was happy that I'm on a regular schedule to see the skin doctor. Doc didn't like the look of several moles last time he saw me, and ordered me to the skin doctor, who promptly took off 4 moles. Ouch! They came back just fine. This Thursday I'll be getting several more taken off. By the time she's done with me, I'm going to be polka-dotted with scars. *sigh*

Doc said I'm really healthy, and everything looks good. He said that in a year, he'll have me get a bone density scan. No more bone scans unless something is weird. But, today he had me stop by the imaging office and have a chest scan. So, I'll get those results in a few days.

Otherwise, everything seems normal and good. Oh, and from now on, I'll be seeing the nurse practitioner instead of the oncologist, every 3 months. That seems like a good sign to me. :-)

Packing Up

Today was a good day. I decided that my bedroom needed to be de-junked. I finally packed all of my scarves and hats into a box, closed it, and taped it shut!!!!

I have had my beautiful wig on one of those Styrofoam heads, sitting on my dresser for the last year and a half. I finally put it back in the box it came in, and both boxes are now on the top shelf of my closet.

That's a little bit of closure, right? I'm slowly putting my "cancer life" away, and taking out my "normal life".

Feels good!

Did That All Really Happen?

Every once in a while I wake up in the morning and think about everything that has happened to me, and I just can't wrap my head around it. I just can't believe that words and experiences like chemo, mastectomy, surgeries, etc. are part of me.

Does that ever happen to you?

Don't Ask Me to Get On With My Life...

I've been reading through a really good book, called "After Breast Cancer" by Musa Mayer, and I think I've decided to continue posting here on my cancer blog. I know in my last post I said I was finished - on to a different blog about getting healthy - but, as I read through this, I realized that I'm no where near done, and there are quite a few things I can post about.

I've been trying to come to grips with my body lately. I wasn't skinny before my diagnosis, but I felt pretty healthy. In the last year and a half, I've lost that healthy feeling. I'm always tired, I hurt everywhere, I'm gaining weight like crazy - it's very frustrating. WHY am I gaining weight? And why, every time I try to exercise, do I seem to hurt something? Am I the only one this is happening to? Of course I'm not. I think that every survivor realizes the toll that a cancer diagnosis takes on a body.

As I read through the section called "What We've Lost", I could really identify with what was written there. Yes, I am a strong person, and I made it through a horrible, awful, ordeal. And, yes, I do feel strong and amazing. BUT, the losses I feel in regards to breast cancer are still very real. Like the books says... I suffer physically. My body has been so weakened by the 7 surgeries I've had, not to mention the 5 months of chemotherapy, and the year of other drugs. And, something occurred to me as I read - I have what the book calls "chemopause". I'm 43 years old, and the chemo has thrown me, prematurely, into menopause. There have got to be some crazy side effects from that. Maybe even weight gain?

Some of the things listed in the book, besides chemopause:
Sense of having been mutilated by surgery - Check
A feeling that my body has betrayed me - check
Feeling aged in other ways - check
Suffer blows to my self-esteem and sense of attractiveness, libido, sexuality, and sexual appeal - check
significant weight gain - check
hot-flashes, depression, anxiety, aching - check

Like the woman in the book, I too feel like I'm "damaged goods". I know this is going to take awhile to work through, but it's helpful to know that I'm not the only one going through this. What I'm beginning to realize is that I cannot ignore all of this - it must be acknowledged, or I won't be able to heal properly. I had cancer. I'm different than I was 1 1/2 years ago. I am capable of healing, and becoming even better. Just don't ask me to forget what happened to me. Don't expect me to "get over it", or "get on with my life". It's not as easy as it sounds. Breast cancer is part of me now. I am Breast Cancer. But, I'm also a Survivor.

I'm going to do some research on "chemopause". Knowledge is power!

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!