At last! My dream of the nation's first-ever "BUILDING FOR A CURE" show home has become a reality! Without the help of many wonderful and giving individuals and companies my vision would have bombed . . . thank you to everyone that teamed with me and shared the dream; the subcontractors, suppliers, realtors, developer, designers, the foundation's "Board of Directors" and now you, the public.

Being diagnosed with cancer has, in fact, changed my life for the better. I have slowed down - "small" things are now not as "big". I admire the intricacy of every beautiful flower.
I stop in my stops every time I see an angel and the hug from my son Colby and kiss from my husband John are even more meaningful than one could ever imagine. Smiles mean more than before.

I refuse to acknowledge negativity - it's a waste of good, positive energy. I'm confident that "our cure" is just around the corner - in the meantime we're just becoming even better individuals. We are working hard every day to fight-the-fight and we no longer have to ask "why"? All of us have set-backs, we're just learning how to make the most of them and be stronger in spite of them. I'm personally encouraged by people like Lance Armstrong, Henry Bloch and other "metastatic cancer" survivors who have "beat the odds". It can be done! Thank you to them as well as the millions of people around the world who continue to donate funds and work together to find a cure to this horrific disease.

I continue to search for signs every day that "I'm going to be ok" and I do, in fact, see them! Of course there are no guarantees but I want to thank everyone who's said a prayer for me. They truly have been heard!

Kim's Story - Journal Entry #8 - October 27, 2002

Where do I begin? It's been almost 3 months since my last "official" journal entry. I have been keeping notes throughout the last several months and just now am having the time to sit down at the computer and compose my thoughts. It seems that my life is finally getting back to normal - although "normal" for me will never be the same. I know many of you have been asking and wondering where the next journal entry was so here it goes.

My last journal entry was on July 18th and I had just started my 5th round of chemo (taxotere). I know I shared with you that I wasn't happy about having to do chemo again, but the good news is that I made it through - it was a piece of cake compared to the adriamycin/cytoxan. I didn't have any more allergic reactions, and although the fatigue and diarrhea remained for a few days after each chemo treatment, it was much more bearable. My hair had started to come back in (much darker this time, although who knows what my natural color is at this point in my life since I've been highlighting for the past several years), but then started to thin out after the 2nd round of taxotere. It really looks like crap now. I'd almost rather be bald. I never really minded the whole hair loss thing, but once it started growing back, I was really excited. Now, as we're preparing for our book and I'm looking at pre-cancer pictures, I long for my old hair back. I know it will come in time, but this in-between stage is not a pretty picture. For strangers who don't know me, they will probably think I have a really bad hairdresser. I have had a few complements on my hair and my response, "complements of Dr. Courtright". I went on Friday for my 1st haircut. Something as simple as getting a hair cut felt great.

Although I was so excited to go for my 8th and final chemo treatment on September 12th, when I left the doctor's office that day, I had never been more scared. For the past 10 months, I have had constant care and knew that I was fighting this with everything I had. However, once they unhooked that last IV bag and sent me on my way, I felt as if were waving a wand and saying to me now you're cured - the problem is that there are no guarantees and there is no "cure" for breast cancer. At least when I was being treated, I knew that the chemo was killing the cancer. But now what? I will be living with the fact that I had breast cancer for the rest of my life and facing those unknowns and the possibility of a recurrence. I understand from talking to other survivors that this is a normal feeling, but it still doesn't make it any easier. I know one thing - don't we all face unknowns. Although I face the unknown fears related to breast cancer, life is an unknown. We don't know what tomorrow may hold for us, so that's why we better make today count.

I haven't really had the time, nor the energy to really think about the past 10 months and what I've been through, both physically and emotionally. However, I watched Oprah's special which aired several weeks ago about breast cancer. The show featured several young women going through treatments and talking about their experience, their fears and their hopes. Watching those women receive their treatments, being wheeled into surgery, being bald, and talk about wanting to be around to raise their children made me realize that they were me. It put into perspective for me what I have been through and made everything more real. I cried my eyes out during that show - it was as if I was watching myself. I never really let myself feel those emotions before. From the very first day of diagnosis, I told myself that I wasn't going to let this cancer thing get me down and I didn't.

Throughout this experience, many people have asked how I have been so strong and had so much courage? My answer - what other choice do I have. I never knew how strong I was until I was diagnosed with breast cancer. As I stated in my very first journal entry - Lesson #1 - I am a person who is living with cancer, not dying from it. I refuse to let this experience take over my life. I am a mother, a wife, a daughter, a sister, a friend, a community activist, a political guru. I may have breast cancer, but breast cancer doesn't have me! I may not be able to be in control of the cancer, but I am in control of how I life my life - I choose to make the most of each and every day God has given me and take the time to experience the good things that life has to offer.

I have fought hard over the last 10 months for my friends and family. I have fought hard and will continue to fight hard for Brandon. I want to be there for his firsts: his first day of kindergarten; his first soccer game; his first crush; his first kiss; his first girlfriend. I want to be there when he graduates from high school and college and to dance with him at his wedding. I want to be a wonderful grandmother to his children and be a loving and supportive friend to his wife. I want to teach him how to be a compassionate, caring man who has the courage to stand up for what he believes in and make a difference in the world. As I sit here thinking about these things, I feel so lucky and blessed. Why? Because how many people have the opportunity to look at life at my age and realize that these are the things worth fighting for and that challenges can really be opportunities. How many people just go through the motions of their career, their relationships and their role as a parent, without really stopping to think about what it all means? Many of us go through the motions of life without every truly living. We convince ourselves that life will be better after we get married, have a baby, then another. We tell ourselves that our life will be complete when we get that next promotion, when we get a nicer car, are able to go on a nice vacation, when we retire. The truth is, there's no better time to live than right now. If not now, when? I know I have been able to reflect on these things and my hope is that through this journal, you have too. Martin Luther King Jr. said it best "the worst of all tragedies is not to die young, but to live until I am seventy-five and yet not ever truly to have lived."

I did speak to Dr. Courtright, my oncologist, and Dr. Jew, about our next steps. At this point, I will be going in every three months for blood work and check-ups. The check-ups will continue for the next two years. I will have a mammogram every six months. I had a check-up this past Friday and everything looks great. My blood counts are normal again, maybe this explains why I feel like I'm bouncing off the walls with energy. I have my first mammogram since my initial diagnosis on Tuesday. I'm sure everything will be fine, but I am scared to death. I have my final surgery on November 12th. I will be having my nipple constructed and the tattoo of my areola. Yes, I will have a tattoo now. I will also be getting a breast lift on my non-affected boob (my mommy boob as I have referred to in the past - the one that's a foot lower than my new boob - the one that looks like I'm a 30 year old mother who has breastfed).

I have been undergoing physical therapy treatment for lymphedema for the past month and a half. Many people wonder what lymphedema is so I will try to explain it as briefly as possible in simple terms. The lymphatic system removes extra protein and water from body tissues and returns them to the blood system. A damaged lymphatic system may result in a disruption of these pathways resulting in symptoms that require specialized treatment. These symptoms can become chronic and may be diagnosed as lymphedema. Lymphedema is common among post-mastectomy patients and other cancer survivors who have lymph nodes removed and/or radiation. Lymphedema is an accumulation of lymphatic fluid which develops when lymphatic vessels are damaged or lymph nodes are removed and the impairment becomes so great that the lymphatic fluid exceeds the lymphatic transport capacity. Lymphedema becomes apparent when the protein rich fluid builds up and swelling begins.

I started to notice that my right hand (the side on which I had surgery) was starting to swell so I immediately started physical therapy. Lymphedema can occur immediately post-operatively, within a few months, a couple of years, or 20 years or more after cancer therapy. The good news is that hopefully, with proper care, my lymphedema can be kept well under control. If it is not treated, lymphedema can cause a lot of pain and damage. The physical therapist has been performing manual lymph drainage and I have been fitted for a compression sleeve and glove (to wear at night, when I fly and other times when swelling starts to occur). There are other things which I will have to do for the rest of my life to treat the lymphedema. My right arm must never be used for any type of injection, IV, blood drawing, blood pressure taken, etc. The arm must be kept spotlessly clean. I must avoid any type of repetitive movement, avoid heavy lifting, don't wear tight jewelry or elastic bands around the arm or fingers, avoid any type of trauma (bruising, cuts, sunburn or other burns, sports injuries, insect bites, cat scratches), wear gloves while doing housework, gardening or any type of work that could result in even a minor injury, avoid cutting my cuticles, and use an electric razor to shave under my right arm. I feel like maybe I should just wrap my right hand and arm in a germ-free bubble and never use it again. I don't want to have sausage fingers for the rest of my life (this takes me back to my pregnancy days with Brandon when my fingers looked like sausages), but I'd take sausage fingers over the alternative any day. This is just something I'll have to get used to. The good news is that the therapy has helped and now the only one who seems to notice the swelling is me.

On a more personal note, I have been thinking a lot lately about our future and whether or not I will be able to have any more children. My doctors have told me to wait 3-5 years and even then, I may not be able to get pregnant. Refresher for you - I know I mentioned this before, but for many cancer patients, the chemotherapy causes premature menopause. My period did come back for one month (kind of spotty), but at least it came back. However, that was three months ago so who knows what will happen in the future. I am encouraged by the large number of pre-menopausal women I have spoken with who went on to have more children after chemotherapy. Regardless of what happens, I am blessed to be alive. When it's time to cross that road, God may have different plans for us. I know there are so many children out there who need a good home so we may adopt.

For those of you wondering, the book is coming along great. Kelly Eckerman recently did a story on the book and we got a great response. We have had several meetings now and have our first three chapters written. We are now working on query letters, book proposals, market research, and trying to navigate our way through this new world of publishers, agents and editors. Our goal is to have the book come out next October for breast cancer awareness month. We will have all of our chapters written by the end of December. We have decided that even if we cannot find a publisher, we will self-publish this book. We really want to share our stories in the hopes of helping others. We even have a title now: Nordies at Noon: The personal stories of four women "too young for breast cancer". Background on the title: We have been meeting the fourth Tuesday of every month for lunch at Nordstrom's Cafe. I will e-mail you all more information on the book once we have more details. We will be donating a portion of the proceeds to Ribbons of Pink Foundation, a local non-profit organization which co-author, Jana Peters, started to educate young women about breast cancer and the importance of early detection. I want to thank so many of you for providing advice and contacts for this very special project. We will also be looking for celebrities or other important figures to endorse our book so if anyone has any contacts, please let me know.

We are nearing the end of October, which is National Breast Cancer Awareness Month. I have been keeping very busy sharing my story and trying to continue making a difference for others. I feel like the poster child for breast cancer this month (I know many of you are getting sick of seeing me on the news), but that's okay if I can make a difference in even one life (although I must agree with my friend, Jana - I didn't go through all this to make a difference in just one life, I want to make a difference in thousands of lives). I really do enjoy sharing my story and talking about breast cancer awareness. I am encouraged when I go and speak to a group and women come up to me after the event and say that they're a survivor of 10, 15 or 20 years. That gives me hope.

However, I also hear about those stories of women, even young women my age, who didn't make it. I hear about how their doctor told them they were "too young" for breast cancer and dismissed their lumps or mammogram results. This makes me very angry and makes me want to continue sharing the message that breast cancer affects people of all ages - even young women.

I have been working with other young women in the area to get a chapter of the Young Survival Coalition started in the area. We have 42 members so far, which is amazing considering we've only been going for two months. We are going to be doing lots of great things. I've also been working with the Komen Foundation on their Mayors for Mammograms program and on public policy initiatives. Over the past month, I've had the honor of speaking at the Missouri's Governor's Mansion (The Governor and First Lady held a Celebration of Survivors event and had a pink lighting ceremony). Last weekend I had the privilege of speaking at the Building for a Cure event hosted by the Touched By Cancer Foundation. It was a beautiful event and I met yet another amazing survivor, Lori Lober, who is an inspiration to me. I am inspired by her strength and courage. She invited me to attend the event and speak about my experience. I was on the program right before Miss America 2002, Katie Harmon, whose platform is breast cancer.

I know many of you saw the recent "AS I SEE IT" which I wrote for the Kansas City star recently about the importance of breast self-examination despite the recently published study stating that breast cancer does not save lives. I know breast self-examinations saved my life and many other women who found their cancer through breast self-examinations. Please continue performing your breast self-examinations.

A LONG OVERDUE THANK YOU - I would like to thank my Greater Minds friends and all of the Race for the Cure team members. We looked awesome in our bright green t-shirts. For those of you who didn't know, we won the Largest Community Team award. Thanks again for your support. That day was a very special one for me. I have participated in the race in the past, but it had an entirely new meaning this year. I was amazed to see so many pink survivor shirts.

Life as the mother of a two year old is getting back to normal too. We have been trying to do lots of fun things with Brandon over the past several months since I feel like I missed out with him over the past year. We've been to Worlds of Fun, the Missouri State Fair, Glad Fest, etc. He's had so much fun. I enjoy doing simple things that I haven't done over the past 10 months. Today I went to the grocery store and ran errands. It felt so good to be able to do these things and not be tired. We're in the thick of political season so things are really busy. Please don't forget to vote on Tuesday, November 5th. I do feel a little overwhelmed lately- I realize how much I've ignored over the past 10 months. The Prospect Corridor Initiative is going great and we're starting to make some great progress. However, I'm really trying to take one day at a time and live my own advice - remember your yesterdays, dream your tomorrows, but live your todays.

I can't wait for the holidays coming up and for January to arrive. In January, it will be a year since my initial diagnosis. I've decided that I want to have my own "Celebration of Life" event in January and invite all of my friends and family to celebrate my one-year anniversary. I want to make this an annual event and have 50 more years of this celebration. I will let everyone know the details once they are confirmed.

Although my journals will not be as frequent now, I will send out periodic updates every 3 months or so. I will also keep my website (www.caringbridge.com/mo/kimcarlos) updated with recent pictures and news. In the meantime, I may send out e-mails asking for advice and thoughts on our book. I want to thank all of my friends, family and even complete strangers for your support, friendship and love during this difficult journey. I would not have been able to survive without all of you. I especially want to publicly thank my sorority sister, friend, co-author and guardian angel Patti. Because of you, I am alive today. Receiving the Ribbons of Pink You Are An Inspiration award from you on Friday was a true honor for me. Thank you for saving my life.

REMEMBER TO CHECK YOUR BREASTS OR HAVE YOUR WIFE, MOTHER, SISTER, ETC. CHECK THEIR BREASTS THIS MONTH! I am still trying to keep track of how many people are checking their breasts because of my story. If you or someone you know now does their monthly breast exam because of my story, please let me know. My count is now around 480 people.

Until next time,

Kim Carlos

Lori C. Lober ‘01