Graves Disease!

Seriously...Today my Thyroid Dr. called and informed me that my Grave's disease has flared back up.  So today I start back on my meds.  I should have known that the Grave's was causing all of my problems: the not sleeping, the hair falling out, and the memory problems.  Maybe being back on PTU will bring my sleeping back to normal.

On another note, I see my cancer dr. on Wednesday.  Had labs last week. Looking forward to talking to her about my joint pain I have been having which is a side effect of my drug femara. 

Update

I am gaining major weight.  Ever since I have started taking this new drug and gotten my ovaries out..I have been gaining weight like it is going out of style.  My arm has swollen up at a lot from my lymphadema.  Todd wrapped up with the wraps instead of wearing my usually band.  I go to the doc in two more weeks. 

Other than that I am hanging in there.  I have my moments of depression but for the most part remaining positive.  Melissa

My decision!

I have been asked about my decision to become a stay at mom. My cancer has not come back..but it has changed me so much. I realized that working I cannot give my kids the memories I want to give them. I cannot control when the cancer is going to come back but I can control what I do with my life in between those times. My docs tell me that the next few months are very critical as far as reoccurance (80% chance in the next year.) I don’t want to look back and think I should have spent more time with my kids.

Hot Flashes, Hair, and My First Week

My first week at home has been so much fun. Campbell stayed three days from school because of the weather. The hardest part is I am constantly going and going. The C’s don’t stop moving. I am used to being able to sit when I need to. Besides that I am having fun. Next week should bring more of a schedule for our family.


Hot Flashes

I was asked about my health today. As far as I know I am doing good. The biggest struggle for me is the menopause symptoms I am having. Hot flashes are really awful. I remember as a kid making fun of my mom for having one. Not anymore!! I can count on waking up between 3 a.m. and 4 a.m. from a hot flash. These things are horrible…my upper lip and eyebrows get all sweaty. I know it is not that bad when I don’t have to change my cloths.

Hair

The other big change for me is the hair. I swear I am plucking my chin twice a day for at least 10 minutes trying to get those little black hairs off of my chin. I am obsessed with getting them out. Recently, I tried so hard I have a scab on my chin!!!! Now if the hairs are not noticeable the scab certainly makes someone wonder.

Docs

I go visit my surgeon in Indy on Tuesday. Other than that I am religious wearing my lymphadema sleeves and taking my new drug femora

My New News!!!!!

I am so excited to share my news with you!!!  I am going to be a stay at mom.  I put my notice in and on January 28 will be last day.  I cannot wait to more involved in my kids lives. 

My decisions has been solidafied when I found out that three women in the last week have had a reoccurance of Inflammatory Breast Cancer or recently diagnosed with IBC and are terminal.

Update.

Christmas


Christmas was emotionally for me. I cried a lot over the holidays. I believe it is because I am starting to realize how much I really truly missed over the last year and half. I was at my dad’s on Christmas Day and was looking out the window at my family playing in the snow and sledding. Thinking how lucky I am to have such a wonderful response to treatment.

Treatment

I just cannot believe the progress I have made and how much better I feel. I still get tired easier than I should and I struggle with my words every now and then. It is funny because I used to talk so fast and now if I start talking too fast I make no sense and I forget my words.

I am also worried about reoccurrence. I have been thinking a lot about it..worrying about how many more Christmas’ I will have. It has been almost a year since my breast was removed. The stats say the first two years are critical when it comes to inflammatory cancer. In that last few weeks I have heard of a couple woman whose cancer has come back. I had an oncology appt. last week. We talked about reoccurrence. She said explained to me what I should look for….other than that I see her again in April.

Finally An Update

Survived the surgery. Not such a bad recovery. Doc was able to use the Davinci Method. Will be back to work on January 3. More info later.

Are you kidding me?

Surgery on the 9th of December. And to top it all off I have to prep myself for surgery on the 8th by cleaning my bowels.  Are you kidding me?  That sounds like a lot of fun.

Third Time is A Charm!

I meet with the third doc. He is willing to do my surgery and said he understood why I should get my ovaries out. Doc said that we will do one of two things. First, take out the ovaries through laparoscopy. If there is too much scar tissue then he will open me up and perform a hysterectomy. Someone from his office called last week…thought we could do it on the 29th of November at the surgery center. I told her that I would prefer to go the hospital instead…Todd agreed because if they have to perform a hysterectomy then I will have to be transferred to the hospital anyway. Seems like there is a good chance there will be too much scar tissue considering I have a two c-sections and an appendectomy. So we are now waiting on when that can get scheduled. She said something about the 16th of December.


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.

Journal and Courier

I posted awhile ago that the Journal and Courier asked me to write my story. I was in todays paper...Here is the story. Also if you have more time read some of the other amazing stories in that section.

http://www.jconline.com/article/20101012/PINK/10120315/In-My-Own-Words-Melissa-Culver-Pekny-Brookston

Ovarian Suppression

Doc said that I must get my ovaries suppressed. This is due to the fact that my cancer is fed off of my female hormones. Eliminating estrogen and proestrogen will maybe push back a reoccurrence of my cancer. I have three ways I can do that: injection, radiation or removing them. After talking about my options with Dr. K and discussing it with Todd, I decided to have surgery. I went to one doctor. She pretty much told me I am too young to have this surgery. I believe she repeated the following phrase at least 15 times during my visit, “We don’t recommend it for women under the age of 55.” Todd tried to explain to her about my cancer but she basically looked at us like we were stupid.


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.

October 4, 2010

My oncologist says that my scan shows no sign of cancer; just some damage from radiation which was to be expected.  I have been dancing and celebrating since.

My new look!!

I am getting treated for lymphadema in my right arm. My arm was going numb and tingling every time I raised it up. Overall, it is only 2.5 cm bigger than the other arm. I guess I caught it early enough. But because of it I have to wear a wrap on my arm. I have included a photo of it. It is slowly going back down to normal size.
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.

New News

O.k. I give….A month and half is way too long for all of you when it comes to an update. So not in any particular order is my new news…


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.

Hello Gorgeous!!

http://www.wlfi.com/dpp/news/local/cancer-survivor-surprised-with-a-makeover

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

Tiffanie Dismore

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.

The Counselor and Coincidence

I meet with the counselor on Monday and loved her. She looked at me and said, “You are so young!” I looked at her and said, “You are just a girl too!” Then she asked me, “How old are you?’. I told her and I said, “How old are you?” She is thirty six just a year older than me. After that exchange, we talked about the last year and the feelings of guilt and sadness I am having. She even talked to me about Jesus with and my faith. We are going to continue to meet for a while.
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?

Five Doctor Appointments Two Days

Todd and I went to Indy last week and meet with several docs. The first visit was with a reconstruction doctor. It was explained to me that because of the type of treatment I have had I only have two options for reconstruction. Option one the doc takes your back muscles and flip it around to make your new breast. It is a four to five hour surgery then three to four days of recovery in hospital and then four to five week recovery at home. Option two DIEP the doc takes your stomach skin and fat (giving you a tummy tuck in the process) and literally sews it on to your chest using microsurgery. This surgery is an eight hour process, then five days in the hospital and six weeks of recovery at home. Then a few months later after swelling goes down you get your real one fixed to match your new one. Plus later you get a nipple put on. He was really nice and Todd and I appreciated his honesty. We have a long time to think about it because I can’t even start the process til January. Right now I think I may wait for a while because I want to be able to play with my kids.


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.

Shout Out

Today I put on a necklace that someone gave me a while ago it says SURVIVOR....

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.

Show and Tell

O.k. I am a dork.  I have had this fake one (fo) for about a month and half.  I have been having fun showing it off. I am amazed about how many people actually want to see it.  I showed it off at work the other day.  Then at the family reunion after several people left. I took it out so the relatives could see it.  Then I was at a party the other day and I got it out.  I also went to the back room at church and showed it to some of the ladies who have had my back this past year. The following are some of the things I have heard during show and tell:
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.

I am...

TIRED!!! I have been so tired the last few weeks. Some days I don't want to get out of bed.  It is like I have a personal struggle with myself some days about getting out of bed.  I know in my heart I need to get up and exercise or at least do something. But it is very hard for me. One doctor thinks I am depressed, another doc thinks I am doing great. Most support groups for women with breast cancer in this area are women who were diagnosed in their sixties. I am not going through the same things as a sixty year old.  Hard for them to understand what it is like to raise a family and go through treatment.