Tuesday, December 14, 2010
Friday, November 5, 2010
Monday, November 1, 2010
And Five Other Good and Crazy Things:
1. I am now wearing a compression sleeve on my right arm. The swelling has gone down enough that I get to take off the wrap for now.
2. A woman the other day at therapy told me she read my article in the paper. It was a little weird for me.
3. A woman I meet at the cancer center last August passed away last week. I went to her funeral and was surprised to see that I was in her photo montage.
4. I noticed that I don’t tire as easily as I used too. Thanks goodness.
5. I feel a little guilty when another cancer patient asks me how I am doing and I say I am clear right now.
Tuesday, October 12, 2010
So we went to another doctor. That visit went about as well. This doc was concerned about the symptoms I would be having and the risks involved in surgery. I tried to explain to both of the docs that whether I get them removed or have surgery I am going through menopause and will experience those symptoms (hot flashes, could develop osteoporosis or other menopausal symptoms). Doc #2 went so far to tell me that I should speak to my oncologist again. I said to her that I don’t need to talk with Dr. K because I already had a discussion with her about my options. I said you can talk with her because I don’t need to. I also told Dr. #2 that if she won’t do the surgery that I could go to Indy and find someone who understands why I am choosing the surgery.
On Monday, Dr. K called and we decided to try Dr. #3. I am meeting with him on Tuesday to have a consultation about getting my ovaries removed. Hopefully, this appointment is more productive then my last. Because of the delay of not finding a surgeon, I started injections of Zoledax (an ovarian suppression drug). This drug is put into your body by injecting a pellet under the skin in your stomach area. Before, this injection takes places I had to numb my belly with ice first. I was curious about the cost of this injection because it was required to get a pre-certification notice. The cost is $1000. I have to keep taking this drug every four weeks until I can get surgery scheduled.
Wednesday, September 22, 2010
October 4, 2010!!! That is the day when I have my last treatment. It is also the day that I get the results of all of my scans, blood work, and cancer markers. Because of this I have been a little stressed out and not sleeping much. 10/04/10 seems like a long time away. Todd is taking the day off and going with me. I will update you as soon as I know something.
Wednesday, September 1, 2010
1. Two rounds of Herceptin left.
2. Just had a Mugga Scan on Monday. I will get results on Tuesday.
3. My right arm as swollen up and they think it is the beginning signs of lymphadema. On Thursday I start therapy. As of now, my right arm is 2 cm bigger than my left.
4. My hair is getting so long….It looks just like my dad’s only black in color. My hair has grown in so thick. It is at the point where you cannot do anything with it.
5. On my mind a lot is the end of treatment. I am struggling with the idea that my life will no longer be control by my doctors.
6. My little sis is getting married in a month!!!
7. In the last month, a couple of my friends that I had treatment with have lost their lives to cancer. So I have struggled with their passing as well.
8. I decided the family should donate all the books about cancer to the library for someone else to use. When I talked to Campbell about she was very hesitate about it. She said she may need them again. I need to sit down with her and talk about some more.
9. The Journal and Courier called me and asked me to write six or seven paragraphs about my journey the last year. She asked me to include information about my cancer, my treatment, how it has changed me. Are you kidding me? How to I include all that information in such a little space? Wish me luck.
Tuesday, July 20, 2010
This is what happened to me on Friday....
Cancer survivor surprised with makeover
Over $600 donated to do makeover
Updated: Saturday, 17 Jul 2010, 3:17 PM EDT
Published : Friday, 16 Jul 2010, 9:55 PM EDT
LAFAYETTE, Ind. (WLFI) - A woman shopping for a wedding present got a gift of her own Friday afternoon. 34-year-old cancer survivor Melissa Culver-Pekny was at the Tippecanoe Mall when family and friends surprised her with a makeover.
Culver-Pekny was in shock when friends and family rushed toward her at J.C. Penny, surprising her with a makeover. The makeover was courtesy of Hello Gorgeous! , a nonprofit organization that provides free makeovers for women with cancer. Needless to say, Culver-Pekny was speechless.
"Unbelievable. After this whole last year. It's unbelievable," she said after the surprise.
Culver-Pekny was diagnosed with inflammatory breast cancer just over a year ago and, as it is for all cancer patients, hasn't been an easy road.
"I've had 10 rounds of chemotherapy and then I had my surgery in January and then radiation," she said.
Now friends and family wanted her to be treated like a queen. The lucky lady was whisked away to this Hello Gorgeous! mobile day-spa right outside the mall to get pampered and made over.
"Facial, that was amazing! They did my make-up and taught me how to do my make-up. Barnyard cuts in Chalmers did my hair. They colored it and cut it right there on the bus," Culver-Pekny said, explaining some of pampering she received.
Friends and family gathered outside the RV, waiting to see the makeover. Culver-Pekny called them her support system.
"Helping me through the fears and the sadness and losing my hair and the sickness and everything," Culver-Pekny said, describing her families and friends.
The big moment arrived and as the doors of the RV opened, the crowd yelled 'hello gorgeous!'.
"Gorgeous! I feel absolutely gorgeous!" Culver-Pekny said after her makeover.
"This gives her an extra lift to know that someone cares enough to help her in this year of hardships," Culver-Pekny's mom Donella Carter said after seeing her daughter for the first time after the makeover.
Hello Gorgeous! founder Kim Becker and creative director Trisha Greenlee usually do the makeovers in South Bend, but are on a six week road trip doing makeovers for cancer survivors across the state.
"To make it to where they might even forget that they have cancer for a few hours. They are so empowering. They are just so inspiring," Greenlee explained.
Over $600 worth of clothing, jewelry, make-up and time was donated for the makeover. Culver-Pekny also received a free dinner with all her friends and family afterward her makeover.
Friday, July 16, 2010
Yesterday I got a phone call from a woman who was diagnosed with cancer last August. She got my name through the Community Cancer Network. The lady and I talked about our journeys and at the end of the conversation we decided to meet someday for lunch. She told me her last name so that we could connect on face book. When I heard her last name I realized I had prayed for her when she was initially diagnosed. I explained to her that a co-worker of mine attends her church and had told me all about her last August. How crazy is that?
The second stop was my mammogram on my left breast. I was really nervous about this. The Doc came and told me it was good. Thank goodness. The third stop was with Doc Kennedy. She did a physical exam and also explained to me about the importance of watching and doing a self exam on my right side. The last person we meet with was a nurse for a survivor meeting. The nurse talked to Todd and me about how to handle the different feelings and symptoms I was having from the chemo and radiation. She gave us all of my medical records for the last year and a book on what to do now that I am almost done with treatment book.
I felt relieved after talking with her because one of the issues I have had is a problem with word recall and short term memory. I literally will be having a conversation and will stop saying something because I can’t remember the word I want to say. But I am not crazy!!! It is normal for this to happen…which makes me feel so much better.
The next day I meet with my oncologist and had a treatment. This is the first time I felt unlucky in my room placement; I got stuck with an older women who was sleeping so well she was snoring!!!! It was so loud I started laughing and she still did not wake up. Oncologist said things are going well. She hooked me up with a counselor to help me deal with my issues of fear and sadness.
Friday, July 9, 2010
On this day one year ago the doctor came into the room and said, "yeah, it's cancer!". I looked at my mom and said, "o.k., what do we do next? It will be o.k.". This year has been a journey of ups and downs. I have constantly been amazed at how much love, support and prayers I have received from love ones, friends and complete strangers.
So in honor of this day I want to SHOUT OUT to some people who have been there. This is just a partial list...
The FAM...all of you to dads and moms, kids, the best husband in the world, sistas, brothers, nieces and nephews and cousins. I can't thank you for everything you did....the list would be to long.
The Medical Staff and Dr. K at Clarian Cancer Care...the attention and love I feel when I go there is unbelievable. I don't even want to put names down because I know I will forget one of you...From the moment I walked in I have felt that each one of you truely cares. Plus you put up with my crazy stories, my loud mouth, and my laughing especially when another truely special cancer patient and her daughter are there.
The Medical Staff and Dr. Kennedy at Clarian North Breast Care...you amazing...the complete package and have helped the husband and I so much.
The Co-workers (Health Dept, APC, Building, Mits)...God Bless you all...for putting up with my illness, my chemo crabbies and lack of energy. Taking on part of my job and for continually listening to my crazy stories and the FAKE ONE Saga.
The Brookston Federated Church and neighbors...you are amazing the love you have wrapped around my family is amazing. The food was delicious which is probably why I gain 25 pounds on chemo. I can not forget the night that our family of four received a meal that consisted of a whole ham, a huge pan of potatoes, corn, salad, homemade rolls, and dessert. Or the meal that the Wood's family brought that couldn't even fit on our table.
Melissa's Crusaders....All of you who have showed your love by wearing the shirt around and spreading the word about IBC.
The Strangers...All of those people who I have never meet that have sent cards and prayed like crazy... Eula especially...I can't wait to meet you.
CHAOS...thanks for shaving my head and doing the same with your hair. Your moms were amazing in allowing their boys to look just like their youth group leader.
Thank you all. My journey is not over but this past year has been easier because of all of you.
Wednesday, July 7, 2010
1. I can't believe how big it is.
2. It feels so real.
3. How funny is the nipple?
I wonder if I am too open with the whole thing...but then I feel I am educating women about this process. I wish I had been able to talk to a women about what they went through...hopefully this will make it easier for someone else along the way. Someone told me that you have to deal with it so choose how you are going to cope...I choose to be an open book.
Tuesday, June 15, 2010
What interesting time it has been with the Fake One. I have learned that my cleavage starts really high on my chest. Shirts I was able to wear before I can no longer wear because it comes up like a normal breast does. I have stuck it to my skin only once since I got it. It actually stayed on the whole time; I worried about it falling out of my dress though. I had to keep reminding myself not to touch it.
Survived the wedding I was in this past week. I had to leave a little earlier than I would have liked because I was so tired. Then on Sunday I slept most of the day away. I also slept for 11 hours on Sunday and Monday nights. I really pushed my limits this weekend. I was worried that my fake one would fall out but it didn’t.
Other Random Things…
1. I am getting leg cramps. This past week I have woke up three times in the middle of the night with cramp in my calf. I scream out in pain and Todd wakes up and helps me get it out.
2. We celebrated Ham Bone’s fifth birthday. It is amazing how fun it is to have family and friends around.
3. Todd and I celebrated eight years of marriage. Amazing…I tell him he has become my Superman!!!
4. This past week a year ago is when I started to notice changes in my breast. Todd and I were on vacation celebrating seven years-we had heard that the seventh year of marriage is one of the hardest. So we decided to start the year of right with a mini vacation. If we would could have seen our future….what a hard year it has been for the both of us. This week has been very emotional.
5. One of my uncles was hospitalized this past week because his T-cell lymphoma is back. I sat with him last Monday. He has called me every month to see how I am doing. I hope I can be there for him and his wife during his treatment.
Last week I woke up to swelling in my chest. One of the scariest moments I have had since being diagnosed. I called the doctor and they did an exam. Doc said that she thought it was lympha dema but wanted to do a recheck on Monday the 14th to make sure. Last week was pretty rough for me, so yesterday when I saw the doc most of the swelling was gone. There was also no hard spots on my chest wall-which is a great thing because hard spots could equal cancer.
I had another treatment yesterday. Five more to go. Doc said that I will have a PET scan in October and another MUGA Scan in August and October. She said that I am NED ( No Evidence of Disease). Doc also said the magic count of years of survival start the day that you are told you have cancer. So I am only a few weeks away from one year.
Friday, May 21, 2010
It felt like Christmas morning on Tuesday evening!!! Todd called me on my way home and told me I had a package. I was so excited; it was my new fake one. The first thing I did after pulling into the garage was go get my package and opened it up. My new FO came in its on box (it looks like a hat box.) It was huge!!! And even has a nipple. We held it up to Ham bone’s chest and it is as wide as her little body. The next day I did not wear it. I opted instead to bring it to work to have a show and tell. Several people told me they wanted to see it…so instead of having to take it out every time..I just choose not to wear it. The most shocking thing about it was that people wanted to touch it. Believe me, it feels very life like!! It is a lot heavier than what I am used to so it has take me a while to get used to something being there again.
Here I Go Again…
I have been having issues with swelling under my arm pit again. I am in a wedding with a lower cut back and you can see it. So I called my doc and she sent me to the torturer again (lympadema specialist). The last time I went it was very uncomfortable because I had cording in my chest; the therapy was not pleasant (lots of pressure on the cords). When I meet with my torturer on Wednesday, I was happy to hear that this therapy is not torture like it was before. YES!!!!!!!!!!! It was very comfortable, thank goodness. I was prepared for the worst and was excited to learn this is more like a massage. After getting the treatment, the torturer taped up my back to help get the fluid moving from the problem area to other lymph nodes. I can keep it on my back for 5 days. This type of taping is called Kinesio Taping has swept around the world as a new and exciting treatment option for many conditions, including lymphedema. The concept is by lifting the skin and by the stretching of the tape during body movements, lymphatic flow is improved. So we will see it how it goes.
I don’t know why I do it but I hear stories about women or young people dying from cancer and I begin to panic. Last week a relative of my co-worker died at the age of 29. He left behind three kids. So what did I do, I got on-line and started to remind myself of the statistics of living with IBC. Reading that only 40% of us will make it past the five year mark….
I guess I accomplished only a few things with this dumb move:
1. Reminded me to enjoy every minute God has given me. Who knows when he’ll decide my work is done here?
2. Reminded me to look at the whole picture and figure out what is really important in my life. Is what upsetting me at this moment truly going to make a difference or reflect on me as a person?
3. Reminded to me to laugh and to realize that not everyone will see your struggles the way you do. And that is o.k.
Tuesday, May 11, 2010
Last week I had several appointments. Todd and I meet with Dr. K on Monday. During the visit, she made it very clear to us that with my type of cancer the side effects of all the meds were easier to take care of then the cancer coming back. I have never seen her so serious in all my life. It was scary for me because this whole time she was been very encouraging and she was so serious that day. We got the point and everyday when I take my meds I think of what she said to us. I had my IV treatment after that. I found out that my last treatment for Herceptin is on Sept 27, 2010. Todd and I went and saw my radiation doctor afterwards. She was very positive and was pleased with how my skin looks. She encouraged me to continue applying meds on the skin to keep the healing process going.
On Tuesday, we meet with Dr. Kennedy (the surgeon). This was the first time I had seen her since my drains have been removed. She checked my chest wall and my real one. She told me to make sure that if I have any bumps or lumps in my chest wall to let my doc’s know right away. She also scheduled me to have several more appoints in July (meeting with reconstruction doc, mammogram, follow up with her and a how to be a survivor meeting). These appointments will be the end of my journey with her.
On Wednesday, I got fitted for my new fake one. It was the funniest thing I have done in a long time. In this tiny room, Todd, myself and the sales lady with all of these bras and fake boobs started the process. There is a scale from two to sixteen on size. The lady insisted on me being a number eight…Todd told her I was a ten. She made me try on the eight…after several minutes I ended up with size ten!!!! We also had to figure out my shape of my breast. Ski sloped, tomato, melon!!! I then had to try on several bras. The companies do not make very many bras in my size; this was a struggle for me. I finally found two that would work. My insurance pays for one fake one and two bras every two years. At the last minute, I asked them if that any of the fake ones that stick to your skin. They did!!! I tried it on and I loved it. Even though the first time I put it on it ended up to far under my arm pit. I know I will have many chances to get it in the right place. This “contact model” can be worn in a regular bra or a mastectomy bra. Below are the benefits to the model I picked out (this is from their website.):
• Attaches to the skin and moves with the body
• Stays in place with every movement
• Relieves pressure on the shoulders - especially important for women with lymphedema or a larger bust
• Easy wear and care
• Provides more freedom in clothing choices like low cut-dresses
• Gives a woman more security and self-confidence
Light breast forms offer the following benefits:
• Weigh up to a third less than traditional breast forms of the same shape, offering exceptional comfort
• They help to reduce tension in the neck and shoulders, and are therefore particularly beneficial for women with a large bust or who have been diagnosed with lymphedema following their breast surgery.
• Ideal to wear for sports and swimming
• All Amoena light versions combine the advantages of the best fitting breast form with lightweight comfort.
Now with Comfort+
Amoena Contact attachable breast forms are even more comfortable to wear with a unique and innovative design that includes new Comfort+ technology.
• Look and feel natural with soft silicone front layer and new super-soft outer film that feels like cashmere.
• Stay at a constant, comfortable body temperature longer with new Comfort+. The pearlescent temperature-equalizing layer absorbs excess body heat which reduces perspiration behind the form.
• Enjoy the attachable confidence of the Pearl adhesive combined with Comfort+ technology—you’ll feel an even more secure adhesion.
I am very excited. I should get it sometime this week!!!! Overall, I am doing well. My cousin who was diagnosed with IBC as well had her surgery last Tuesday. Her path reports were great as well. She is back home and recovering. I went to visit her in the hospital. It was like reliving it all over again. I even saw some of the same nurses. I was having a hard time fighting back tears when I saw her.
Saturday, April 24, 2010
1. Tamoxifen (Nolvadex®) is a drug, taken orally as a tablet, which interferes with the activity of estrogen, a female hormone. Estrogen can promote the development of cancer in the breast. Tamoxifen is approved by the U.S. Food and Drug Administration (FDA) for the prevention of breast cancer and for the treatment of breast cancer, as well as other types of cancer.
Tamoxifen has been used for more than 30 years to treat breast cancer in women and men. Tamoxifen is used to treat patients with early-stage breast cancer, as well as those with metastatic breast cancer (cancer that has spread to other parts of the body). As adjuvant therapy (treatment given after the primary treatment to increase the chances of a cure), tamoxifen helps prevent the original breast cancer from returning and also helps prevent the development of new cancers in the other breast. As treatment for metastatic breast cancer, the drug slows or stops the growth of cancer cells that are present in the body.
Tamoxifen has been used for almost 10 years to reduce the risk of breast cancer in women who are at increased risk of developing breast cancer. Tamoxifen is also used to treat women with ductal carcinoma in situ (DCIS), a noninvasive condition that sometimes leads to invasive breast cancer.
How does tamoxifen work?
Estrogen can promote the growth of breast cancer cells. Some breast cancers are classified as estrogen receptor-positive (also known as hormone sensitive), which means that they have a protein to which estrogen will bind. These breast cancer cells need estrogen to grow. Tamoxifen works against the effects of estrogen on these cells. It is often called an antiestrogen or a SERM (Selective Estrogen Receptor Modulator).
Studies have shown that tamoxifen is only effective in treating estrogen receptor-positive breast cancers. Therefore, the tumor’s hormone receptor status should be determined before deciding on treatment options for breast cancer.
Although tamoxifen acts against the effects of estrogen in breast tissue, it acts like estrogen in other tissue. This means that women who take tamoxifen may derive many of the beneficial effects of menopausal estrogen replacement therapy, such as a decreased risk of osteoporosis.
What are some of the more common side effects of tamoxifen?
The known, serious side effects of tamoxifen are blood clots, strokes, uterine cancer, and cataracts (see Questions 5–8). Other side effects of tamoxifen are similar to the symptoms of menopause. The most common side effects are hot flashes and vaginal discharge. Some women experience irregular menstrual periods, headaches, fatigue, nausea and/or vomiting, vaginal dryness or itching, irritation of the skin around the vagina, and skin rash. As with menopause, not all women who take tamoxifen have these symptoms. Men who take tamoxifen may experience headaches, nausea and/or vomiting, skin rash, impotence, or a decrease in sexual interest.
Does tamoxifen cause cancers of the uterus?
Tamoxifen increases the risk of two types of cancer that can develop in the uterus: endometrial cancer, which arises in the lining of the uterus, and uterine sarcoma, which arises in the muscular wall of the uterus. Like all cancers, endometrial cancer and uterine sarcoma are potentially life-threatening. Women who have had a hysterectomy (surgery to remove the uterus) and are taking tamoxifen are not at increased risk for these cancers.
Studies have found the risk of developing endometrial cancer to be about 2 cases per 1,000 women taking tamoxifen each year compared with 1 case per 1,000 women taking placebo (1, 2). Most of the endometrial cancers that have occurred in women taking tamoxifen have been found in the early stages, and treatment has usually been effective. However, for some breast cancer patients who developed endometrial cancer while taking tamoxifen, the disease was life-threatening.
Studies have found the risk of developing uterine sarcoma to be slightly higher in women taking tamoxifen compared with women taking placebo. However, it was less than 1 case per 1,000 women per year in both groups (1, 2). Research to date indicates that uterine sarcoma is more likely to be diagnosed at later stages than endometrial cancer, and may therefore be harder to control and more life-threatening than endometrial cancer.
Abnormal vaginal bleeding and lower abdominal (pelvic) pain are symptoms of cancers of the uterus. Women who are taking tamoxifen should talk with their doctor about having regular pelvic examinations and should be checked promptly if they have any abnormal vaginal bleeding or pelvic pain between scheduled exams.
Tuesday, April 6, 2010
By HealthDay - Fri Apr 2, 8:48 PM PDT
- FRIDAY, April 2 (HealthDay News) -- Inflammation-related genes that are more likely switched on after pregnancy may be linked to pregnancy-associated breast cancer, U.S. researchers have discovered.
Getting pregnant at a young age reduces the long-term risk of breast cancer, but women are at increased risk for breast cancer during pregnancy and for up to 10 years after giving birth. These pregnancy-associated breast cancers are highly aggressive, said the University of Illinois at Chicago team.
They analyzed the level of expression of 64 genes in tissue from women aged 18 to 45 who had had benign breast biopsies and breast reduction surgeries. The researchers found that 22 percent of the genes showed significant differences in expression in the breast tissue of women who had never given birth and those who had children. Inflammation-related genes were more active in women who had given birth.
"Our results showed an increase in immune/inflammatory activity in the post-pregnant breast. Interestingly, this response was not limited to the recently pregnant group, but also characterized more distant pregnancies as well," lead researcher Debra Tonetti, an associate professor of pharmacology, said in a news release.
The study, published in the March issue of Cancer Prevention Research, may help lead to new prevention and treatment approaches to pregnancy-related breast cancer.
The U.S. National Cancer Institute has more about pregnancy and breast cancer risk.
Thursday, April 1, 2010
That was given to me last weekend by Secret Pal (who ever you are?). With that and numerous amounts of cards, wishes, prayers and hang in theres, I am doing much better. Just one of those weeks I had. I just want to thank all of you who helped get out of the rut I was in.
I finished radiation last Friday. It was a little bittersweet. You get so use to seeing all the people that when you leave it is a weird feeling. You are so happy to be done and you hope you never have to do it again but the people are amazing at the Cancer Care Center and it was a little sad to know that their role in your life is over.
I am starting to experience some more blistering and redness in my skin. This week the sores are about a half dollar size. I called the doc and they have changed my cream. This must be applied to the area twice a day. She also recommended that I only wear a white t-shirt to help decrease the amount of irritation. I was able to do this until the weather got nice. Now that I can’t really wear a sweater or sweatshirt over the t-shirt I am once again wearing my fake one. I looked in the mirror today and it was sticking out and I looked really lopsided. I am sure I notice it more than anyone else. (I hope!)
On a more personal/family note, we took Campbell to kindergarten round up. Seems like yesterday she was just born and Todd and I were trying to figure what to do with her. Also, the youth group that Todd and I led is performing the Sunrise Service at our Church. Excited for this year’s play…CSI: Jerusalem.
Have a wonderful Easter!!
Friday, March 19, 2010
Todd and I have realized that I can go one night without anyone helping me. So he has been taking a couple hours off when he has the night shift two days in a row or my mom has been coming over to help.
My poor kids…they just keep going with the flow..while I cry, Campbell cries with me. Then I feel bad because a four year old should not be consoling her mother. What kind of mother am I? I think I am getting more emotional because treatment is almost over. One week left of radiation, then just Herceptin every three weeks. Then what? Right now I worry once treatment ends…it will come back..I think I am just scared about having time to do what I want and my day no longer being controlled by doctors, scans and drugs.
Monday, March 15, 2010
On a good note…I am done with physical therapy or torture as I like to call it. I have been done for about two weeks. Have not missed the torture but I have missed hearing the stories of my therapists’ kids peanut and the twins.
I must remember that several people are reading this blog and when I went to one of my physical therapy appointments. They commented on how on was being tortured by them. I was a little shocked at first because I couldn’t figure out how they knew…then they told that one of the employees who work at the therapist place is a reader of my blog (also one of Campbell’s friend’s mommy’s). I laughed really hard….and realized I had been caught.
Four weeks down only 2 weeks left of radiation. I am starting to see some major skin changes. The chest and underarm area are reddening and my shirts are starting to get uncomfortable. I just keep slathering on the cream…
I have noticed lately in the paper that there have been several young women die of breast cancer lately. So I decided to get on caring bridge and find one of them. I sat and read her caring bridge journal for two hours one day. Of course, the ending is not what I hope for...for me but it was good for me to read her story and what she went through. I felt a peace with my journey and feel fortunate that I have not experienced much pain and suffering along my treatment. In her journal, she constantly wrote this bible verse Hebrews 11:1 “Now faith is being sure of what we hope for and certain of what we do not see.”
Little Chase is now two. The poor kid is registering in the 25% percentile in height and weight. Hopefully the kid will have a huge growth spurt someday and be as tall as his daddy. We celebrated with cake (made by step-sister) and ice cream. He got all good stuff including his first pair of cowboy boots. He has not taken those things off. He even put them on with his footed p.j’s the other day. It was so cute.
A funny story about Chase and the fake one…I picked him and Campbell up from the sitter’s. He hugged me and then looked at me funny. Then, he started to poke me in the fake one. Before I could say anything he grabbed my shirt and tried to look down it. I told him it was o.k. but he kept poking at my fake one. I don’t normally wear my fake one after radiation therapy and for some reason that day I decided to put it back in. Chase must have thought it was too hard and didn’t like it when he hugged me.
Thursday, March 4, 2010
My hair has started to come back. I actually had to shave my legs the other day. Boy, did I not miss that the past few months. Now that my hair is growing back…it is growing in places I could really do without hair there LIKE MY CHIN!!!!!!!!!!! Also, the radiation therapist told me not to shave my arm pit. Disguising!!! I could not handle it and broke down this morning and had Todd shave my arm pit with an electric razor. I will probably get scolded today when I go therapy. I also got my first hair cut. Wendy saw my hair and I believe was a little shocked. Some hairs were about one inch longer than the other ones. I hope to be brave enough to go without a hat or scarf really soon.
Not only is my sister-in-law pregnant but two of friends just announced their babies will be coming soon too.
Bridesmaid Dress Shopping
On Monday, I took Todd to David’s Bridal to go dress shopping for my friend’s wedding. I like I scared the clerk. Not knowing what to say to her about me missing a boob…I just let it all. I don’t have a boob, can’t wear a real bra for a few more months, my scar is huge, I have gained a bunch of weight…you are really going to have to help me. She looked a little frightened. So I try I on the first dress..it was horrible. You could see my scar. The second dress has a high neck (no scars seen). But I had to put the fake one in the dress then hold it with my hand in the right place to make sure it would fit right. Thank goodness number 2 worked!!!!
I was denied into the study for tamoxifin. They don’t want me because I have inflammatory breast cancer. I was really bummed and so was Dr. K. She said she tried to talk them into because I have responded so well to treatments.
Mugga Scan (Heart) was good. I am at 54% function. As long as it stays above 50% I am good to go. Pet Scan did not show any signs of cancer cells. I asked several times to make sure I heard her correctly. So far so good.
I found out that I only have to have six weeks of radiation. I was so excited. Two more weeks of the treatment I am receiving now. Then two weeks of the radiation concentrating on my incision line. I have just now started to notice red spots on my chest about two inches below my incision and right below my clavicle.
New Quote I heard in the Movie “You Are Not Alone”. It is a movie that joins six young women for an intimate and candid discussion of the issues unique to young women diagnosed with breast cancer. It was given to me by the Young Survival Coalition.
“Remember on bad days you can have good moments”
Wednesday, February 24, 2010
2. Don’t make jokes at the expense of your friends. Accidently hurt a friend this week, due to a joke being taking seriously. Not a good thing.
3. When they say don’t talk in the radiation room they mean it. I started to ask questions the other day about what exactly they were doing and the radiation guy was “Don’t move!! We will answer your questions after it is all over.” I thought oh boy I am in trouble. He did answer my questions at the end.
4. They are radiating my chest from my breast bone over to my back/humorous head then two inches under my mastectomy line to the middle of my neck. So far so good no skin damage right now.
My Good News
Two people in my life are getting married!!! I am a Matron of Honor in one wedding and Campbell will be a flower girl. We also found out my sister in law Sara is pregnant!!! I am going to be an Aunt. Plus two of other dear friends are also expecting babies.
It has been interesting looking for dresses though. We have to work around the fake boob. So no V-necks or plunging neck lines for me:)
Wednesday, February 17, 2010
This is what the general experience is like. Every other day, the RT puts this ½ inch thick piece of plastic (they call it a bolus) that conforms to my chest. It stays on for two rounds. The day without the bolus takes about five minutes longer. Total time in and out is about 30 minutes. On Wednesdays I meet with Dr. Scully and get a chest x-ray. I slather this cream on my chest twice a day. It will help with this skin changes.
My hair is coming back. It is almost 1 ½ long. YES!!! This is good because I just realized I can not wear fleece and knitted caps for much longer. People will really think I am stranger then I really am. I have been experiencing some issues with remembering my words. I was on the phone with my sister and completely forgot why I called. I left this long rambling message for her that told her I had called for a reason and that if I kept talking to her answering machine I would actually remember it. I finally remembered at 8:00 o’clock that night. She tells me it is o.k. and that it is just part of the side effects.
Friday, February 12, 2010
Wednesday, February 10, 2010
Number two appointment was with radiation. I got my mold made and the way they make it is really cool. They have this round plastic thing filled with air and Styrofoam beads. They form it around my upper body then take the air out. I am in a position that you would see in a Sports Illustrated Swimsuit addition; my arms above my head and my head turned to the left almost touching my shoulder. They took a picture of me in this pose, too. I will get into this position every time I go for radiation. Then Dr. Scully came in and used Sharpie Marker on me. She drew all over my chest. When she was done, it looked like Campbell had drawn all over me. I thought it was so cool, I made Todd come in and check out the room. It is huge and looks like it belongs in a space station. The RT told me that the room I was in is similar to the room that I will be in for radiation.
Number three was at the Imaging Center. The RT meet Todd and I over there. She brought my mold with her. I had to lay down on my mold. It took me several minutes to find the right spot. You have to get into that same position and if you don’t it is UNCOMFORTABLE. Then the RT took a green marker and wrote on my chest again. I had a CT Scan to make sure everything will line up. Then they informed me that I have to keep these green X’s on my chest in till Monday. They put this tiny circle sticker on top of them to try to keep them from fading. If they fade I have to go back to the Center and they will remark me. When Campbell saw it she said, “That is weird Mommy!”. I hope she doesn’t get any ideas.
Last appointment was with Dr. Kakani and Herceptin. Dr. Kakani talked to me about the study. We decided to do the study that I blogged about earlier. I was so tired by this time that I fell asleep during my IV drug. Nurse Jackie was so awesome. She turned off lights and left me alone. Afterwards, I made a comment about needing to bring my photos of my boob voyage party with me. She said that would be good and told me that she likes me a lot better when I am my usual self. I promised that I will be not so tired.
On Tuesday, the roads were not very good so I stayed home. The kids wanted to go to Bonnie’s and not stay home. So I was home alone and decided to have a pity party. I needed it! I figure if I do this every now and then it is o.k. I just need to make sure I snap out of it. I did and am now good to go. Waiting for the Radiation people to call me about scheduling my appointment is nerve wracking. I am sure once I get started I will get good to go.
Thursday, February 4, 2010
If you have nothing to do on April 17th join me and some of my family at the Komen Race for Cure in Indianapolis. I wasn't going to do..afraid it would be to emotional but two nights ago I talked with a survivor and she said it was amazing for her to go. It costs $28 to sign up. You get a shirt and the opporunity to hang out with me!!!! Just click on the link above to sign up to walk with our team.
I went back to work on Monday part time. I was shocked by how exhausted I have been. I am working about four hours to five hours a day. By the time I get home I am ready for a nap. I am hoping that I soon can start back doing inspections. I still do not have full range of motion and can only do desk work.
My new boob is made out of fiber fill. So it is soft and not real like at all. On Sunday and Monday, I wore it for a few hours. It is all I can stand..after awhile it tends to rub on my skin and starts to bother me. The other day I was going to go without and Todd said I look a little funny. So I looked in the mirror and it was really obvious that I was boobless. We decided I can go boobless only with lots of layers on. On Tuesday, I went to a meeting and went to get into my bag and there was my fake boob. I started laughing (those that know me real well know my laugh is not quiet!) and the two MEN I was meeting with asked me what was funny. So I pulled out my boob and showed it to them. One of them handled it real well and even checked it out. The other one got a little red faced. First man has followed my blog and facebook, so he knew how opened I have been about this experience; the second man had no clue.
I met a lady who has survived breast cancer for five years. This lady was different than all the survivors I have ever meet. She understood the difference between Inflammatory Breast Cancer and Breast Cancer. She did not try to tell me that what we experienced was the same. She said when they first were looking at her cancer, the doctors told her it may be IBC. She said she researched IBC and understood how aggressive it is. She actually said that she had a feeling of relief when they told her it was not IBC.
One of the hardest things for me this past seven months has been explaining what IBC is and how it differs from regular Breast Cancer. So to honor my conversation this week I have decided to repost my sypmtoms below. Please spread the word about IBC...
Symptoms of IBC may include redness, swelling, and warmth in the breast, often without a distinct lump in the breast. The redness and warmth are caused by cancer cells blocking the lymph vessels in the skin. The skin of the breast may also appear pink, reddish purple, or bruised. The skin may also have ridges or appear pitted, like the skin of an orange (called peau d'orange), which is caused by a buildup of fluid and edema (swelling) in the breast. Other symptoms include heaviness, burning, aching, increase in breast size, tenderness, or a nipple that is inverted (facing inward) (3). These symptoms usually develop quickly—over a period of weeks or months. Swollen lymph nodes may also be present under the arm, above the collarbone, or in both places. However, it is important to note that these symptoms may also be signs of other conditions such as infection, injury, or other types of cancer (1).
Thursday, January 28, 2010
On Monday..I went and met my radiation doc. There was so much information that she went over. It lasted two hours. She explained that she wants to see skin changes on my chest; which means that my skin will look like it has been sunburnt. The radiation will be from my neck to the middle of my ribs from the middle of my breasts to under my arm pit. It looks like it will be Monday through Friday for five to seven weeks.
On Tuesday, I went to therapy and was told my muscles on my chest wall is to tight. I have to start therapy to loosen up those muscles. The exercises are not very much fun.
Monday, January 25, 2010
They say what doesn't kill you makes you stronger. Well, what if you didn't sign up for extra-strength training? What if you'd rather catch a few breaks once in awhile? Is that so much to ask? At some point, you'd think you'd be entitled to a free pass or two: skip this challenge; avoid this crisis; delete those problems. It's not that you're not strong or that you don't have what it takes to get through this. You are, you do, and you will. But you've built enough character already, and it's time for things to lighten up a little! I know it's not really my call, but if I were in charge of life's wheel of fortune, you'd get a free spin. And, I'd be right there, cheering you on!
Tuesday, January 19, 2010
1. Lymph nodes were negative
2. Skin and nipple negative.
3. Cancer mass started out as 5 cm when removed was .2 cm (which is the size of a tip of pin).
4. Pathology Report stated this is a stage one cancer...which means that the chemo has worked. Even though path says stage one; my cancer is still stage three C.
5. We will continue to be treated as having Stage 3c cancer.
6. Dr. Kakani stated that it is like being 99% cancer free. Dr. Kennedy stated this is not the results of someone with a poor prognosis.
7 Pet Scan scheduled in two weeks to rule out cancer in other places.
8. Got information about a clinical trail involving tamoxfin. A drug I have to take for five years. Todd and I need to look over all the information before deciding.
9. Drains will be getting removed on Friday. They are really annoying and not allowing me to sleep very well. Range of motion in my arm is also inhibited because they are still in.
10. Due to my port being removed, discussed with Dr. Kakani about when to get a new one. I have 7 more rounds of herceptin; which is given through an IV.
Description of what Herceptin is:
TRASTUZUMAB (tras TOO zoo mab) is a monoclonal antibody. It targets a protein called HER2. This protein is found in roughly 25 to 30 percent of breast cancers. By interfering with this protein, this medicine can stop cancer cell growth. This medicine may be used with other cancer treatments.
Sunday, January 17, 2010
Friday, January 15, 2010
Thanks for your prayers.
Today I took a shower and the bandage fell off. I yelled at Todd because I was emotional wreck. It is getting easier but it is still shocking. Wondering how to example to Campbell why I look like I do. Like the wonderful husband he is..he said you are still beautiful. I check it out again and there are no stitches. Just a straight line incision with some pretty purple and yellow bruising. Mom came over and hung out with me today. She did not cry in front of me when she saw it; so it must not be that bad. Over all, I just feel tired and very sore. The exercises I have to do with my arm are exhausting and I still tire very easily.
We have had a few visitors and some really great food. Thank you from the bottom of my heart for all your prayers. We are almost half way through this crazy journey.
On Tuesday, Dr. Kennedy was changing my bandages and I decided I did not want to look at my new chest. Todd did want to. So, I close my eyes while Dr. K and Todd looked at my wound. After a few minutes I opened my eyes and looked at Todd. He a look of relief on his face. It made me feel so good that I did not see a look of disguist on his face. After it was covered back up, I asked him about it. He said it was really bruised but it did not look as bad as he thought it would.
The rest of Tuesday was much of a blur. They gave me the pain pill Presect (sp?) and it caused quite an allergic reaction. I felt that there were things crawling on me and I could not stop itching. So they went to a different drug that did not have the side effects.
Wednesday morning Dr. Kennedy came in about 7:00 and asked if I wanted to go home. I was a little stunned but excited to see my kids. When she was in the room I asked her if I could see my chest. She took off the bandages and held my hand. Todd held my other hand while I looked. When I first looked, I started to cry immediately. I am not sure how to explain what I felt when I looked. Almost a sense of relief and some sadness because of the drastic change to my body. Dr. Kennedy talked to us about how this was a step towards being cancer-free. Todd and Dr. Kennedy was so supportive during the unveiling of the change. Later in the morning as they were changing my bandages and I only cried a little. When I went to the shower I was checking out my chest and thought that it look like my cousin's chest did when he was a kid. Just concaved and really bruised. The incision is still covered up by a bandage that will fall off in the shower.
Todd was told by the doctor that they only took out all of the tissue that had to do with the breast. She said that when they give me a new breast they can do lyposuction on what I call my arm pit fat!!! If you are girl, you know exactly what I am talking about. We will know the pathology reports by Monday. Which will let us know a lot more details about the cancer.
Tuesday, January 12, 2010
A few more little tidbits from yesterday.
#1 - There was a very sweet girl named, Shannon, that spoke to the family early in the day and asked who Melissa was and commented on how great it was that we were all here showing our support. Unbeknown to us or Shannon, she would meet the "infamous Melissa" (Shannon's words) , as she was the one that brought Melissa to her room after surgery #1. It was great, Melissa had no idea how famous she had become while in surgery.
#2 - Somehow through all the stress and "hiccups" Melissa maintained her smile and even thanked the staff for getting her back into surgery. Melissa never ceases to amaze, as we were on the edge of our seats, she is smiling and thanking the staff for fitting her in.
#3 - Actually got to meet Dr. Kennedy in person! I was so happy about this, she and her staff are angels on earth!
Melissa is now nearing the end of day two in the hospital, I am very pleased to say that day two has been quieter and much more calm than surgery day. Melissa is no longer hooked up to oxygen or an IV and was able to walk a little bit today. She also sat in a chair and posted some comments on facebook as well. Currently the pain has not been too terrible, but we all know that will change as time goes by. Dr. Kennedy has been in twice today and probably will be back one more time. The Social Worker from Dr. K's office came by today, she is a 3 year survivor, she is very compassionate and wanted to see if Melissa needed anything. Melissa did have a few visitors today, but has mainly been trying to rest, which we all know is much needed. One more thing that touched me today. The lady that brought Melissa's lunch today, said that Melissa just glows, and that she could see her strength. Even though Melissa did not ask for this to happen, she continues to fight through with grace and will continue to do so.
Monday, January 11, 2010
After a challenging day, Melissa looks great!
Melissa, Todd and their respective families truly appreciate all of your thoughts and prayers. They have served as a source of strength.
Thank you all!
Before filling you in on the details of the day's events, you all should know that Melissa is recovering very well! In fact, she is sleeping soundly as I write this update from her room.
January 11, 2010
6:00 AM ET
Melissa was admitted to Clarian North Hospital in Carmel, Indiana.
January 11, 2010
8:33 AM to 11:00 AM ET
Melissa entered the operating room for initial surgery to remove her right breast and the adjacent lymph nodes.
January 11, 2010
4:13 PM ET
After becoming light headed, inter alia, Melissa was reexamined by her doctor. Upon the doctor's review, Melissa headed back to the operating room due to some light post-surgery bleeding. She was patched and cleaned up without any further problems.
Post-surgery bleeding is common and should not be viewed as a cause for concern. In fact, the treating surgeon, Dr. Kennedy, characterized it as a "hiccup."
Overall, Melissa has received excellent care under Dr. Kennedy as well as the entire staff at Clarian North.
While there was loss, Melissa surpassed a significant milestone today as she woks to become cancer-free.
That said, Melissa's battle is not yet over. We hope that you will continue to keep Melissa in your thoughts and prayers.
From my own experience, I can tell you that losing a part of you is difficult. So, please do not be afraid to call Melissa and/or to discuss this loss with her. I strongly encourage you to call Melissa and check in with her periodically. Talking about the loss with and listening to her WILL help her during this period of transition. In addition, you will likely learn something from her and about yourself. So, I urge you to stay in touch with Melissa.
Justin M. Hall
PS: While Melissa is in the hospital, please feel free to post your comments at this blog. You can also contact Melissa or Todd by email or send them a text message. Thank you.
Today has been a day that we have been working towards since the beginning of July. The day started off going well. Melissa's blood was clotting normally and they could procede with surgery. The surgery lasted about 2.5 hours and went as planned according to the surgeon, who has been nothing but EXCELLENT! After she was in her room after recovery things went a little down hill. She was feeling a little queasy and hot. She said she had to go to the bathroom. The OT , her nurse, and I helped her to the bathroom and she about passed out in the bathroom. Her blood pressure had DROPPED extremely low.
We got Melissa back into the bed and she started feeling better. The nurse contacted the doctor and she came right back in to see her. She immediately said that there is some extra bleeding and that they will have to do surgery again. That is where we are right now. Melissa is back in surgery and we are waiting for the doctor to come out and let us know what is going on. Please continue to pray and send us your positive thoughts. We appreciate EVERYTHING.
Sunday, January 10, 2010
Last Saturday night, I invited several of the women in my life to say, "Boob Voyage" to the right breast. An amazing night but not for the shy:) We had name tags made from boob imprinted paper. There were pink streamers, boob balloons, boob suckers, and boob gummies decorating the room. We played pin the nipple on the boobs, name all the slang terms for boobs that you can and make as many words as you can from breast cancer. I laughed so hard. My friend Katie found on the Internet a list of slang terms for boobs that had 90 slang words on it. I ended up reading some of the out loud; they were so funny. The girls gave me a book that had pictures of 90 of the 300 Melissa's Crusaders in it and a card that sings "I Will Survive". For those on facebook, there are photos posted on my page.
I am writing this from the hotel the night before my surgery... Todd and I have been amazed by the support we have received over the last six months. Tomorrow is just another step in this journey of mine. We feel lucky and gracious for all of our friends and family who have and will continue to support us during this long journey of ours. I am ready for this next step...with all of you by side it will make it so much easier.
The biggest problem I had this week is that I couldn't figure out what to pack. No way can you ever remember all that you need. Yes, I did remember my new bra with the new fake breast, though!! Besides the bra, I brought my Melissa's Crusaders photo book, a picture of my kids, and my "I Will Survive!" card. Another friend of mine gave me a rubbing coin that says Survivor on it. I plan on holding it tomorrow morning until they say it is time. The only other problem that I am having is I am becoming one of my youth group boys and becoming addicted to my Wii. I played for five hours the other day and Todd and I played unitl 11:30 p.m. last night.
My sister will update tomorrow and let you all know what the outcome is...say a prayer for me around 8 a.m.
Friday, January 8, 2010
Last week they found a blood clot, which meant surgery was postponed. Dr. Kennedy had me see her on Monday the 4th. They ran a dopplar on my clot....no clot to be found. She even checked with a vascular surgereon. He saw no problems with me having surgery on the 11th. So we were able to schedule surgery at 8:00 a.m. Todd and I have to be there at 6:00 a.m. Todd's mom is coming to the house to watch the kids for a couple days while we are in Indy. Hope to be home on Wednesday the 13th (Todd's brother birthday.). The surgery can last up to 3 1/2 hours. I will have my sister blog on Monday to give you all an update.