I Made it to 40!

Yesterday, I got to celebrate my 40th birthday, and it was the best birthday I ever had. Not only did I get a surprise phone call from the Shawnee High School Choir singing Happy Birthday, but I got flowers, decorations, candy, cake, cards, and lots and lots and lots of love.  It made the whole day even more special.

I didn't know I would make it here five years ago.  I was determined to make it, but if determination and prayers helped everybody survive cancer there would be few cancer deaths.  I have become closer to the people I already love in my life, met new friends who kept me sane through the cancer circus, and lost friends to this disease.

I wish I had some awesome words of wisdom I found through the past five years but I don't...I just try to earn every day I get to wake up.

DIEP Flap Surgery for Dummies

I am now 2 1/2 weeks out of surgery and still love my new foob. I had a little bit of post-surgical fogginess and depression from the anestesia that made me question if I made the right decision to go through a tough surgery and recovery for basically a cosmetic reason, and I am now totally comfortable with that decision. I know in the whole scope of cancer and death caused by cancer, a boob is nothing. It was difficult, though to look in the mirror day after day looking at a hole where one of my favorite body parts used to be. Since I had radiation that basically fried my skin and tissue under the skin an implant would be out of the question. Fried skin and tissue no longer stretch without trouble to accommodate a foob. Locally I had two options and one was to take skin and muscle from my back (LAT-flap) or take skin and tissue from my belly (DIEP flap). Trust me, the decision wasn't hard.

I had to wait a year after radiation was complete to allow my skin to heal before the surgery. When it was time to find a plastic surgeon, I already had one in mind: Dr. Anu Bajaj. First let me say that all my doctors could easily go straight to Hollywood to play doctors. For some reason I have a great looking bunch of medical professionals taking care of me. I know it doesn't matter, but I'm gush all the rest of the time about the awesomeness of my doctors. Dr. Bajaj spoke to my SHOUT Cancer Support Group a couple of years ago and was very passionate about helping survivors have a degree of normalacy and finding some happiness after the Big C. She brought pictures of her work and I remember wishing she did my original reconstruction. Not only is she a brilliant surgeon, but she has a wonderful bedside manner that totally puts patients at ease. My surgery was scheduled to take from four to six hours, and I think it was on the outside of six hours. The reason it takes so long is that microsurgery is involved attaching arteries and veins together to feed the transplanted material. According to my family, she looked exhausted when she spoke to them after my surgery.

The only negative thing happened before the surgery. When the nurse was placing the IV in my hand she had a very hard time finding the vein. Because of the lymphadema risk if any part of my left arm is injured I have to use my right arm for all bloodwork, IV's and blood pressure. Anyway...the thought of the nurse forcing my vein to pop up started to make me queasy and I became faint. When I felt a little better I begged to go to the bathroom because for some reason I was afraid I would lose control of my bladder. She walked me to the toilet and the next thing I remember is laying on the floor looking at shoes and wishing everybody would leave me alone and enjoy the coolness that was the tile floor. My next memory is in my bed getting an IV in a different spot on my arm. I think I scared a few people...I haven't passed out since college before I was diagnosed with hypoglycemia.

I remember little of the next 48 hours. I remember waking up in recovery and being very happy to look down and see a foob there. I remember eating ice chips, pushing my morphine button, and watching lots of TV. I was asked to get out of bed to eat the next day and that was about all I was capable of. I don't remember, but I also posted to FaceBook and sent pictures of my new foob to friends and family...something I'm not proud of.

I thought I would put my thought in writing what worked for me just in case I ever need to pass this information along.

DIEP Flap Surgery for Dummies:

Before Surgery:

• Exercise and eat right. Your body is going to go through lots of trauma and it needs to be in good condition to survive what you are going to do to it.
• Freeze meals. Unless your caretaker is a cook, you may end up eating a lot of pizza and takeout during your recovery.
• Clean the house VERY WELL and do laundry. I would love to believe my husband could take over these duties, but no...if yours does, you are very lucky.
• Put the clothes you will wear after surgery in an easy to access place. Many people recommend front button shirts, but I like v-necked t-shirts two sizes too big. I like to cut the neck out of the v-neck to make more room and easier to put the shirt on. Personally, it is more flattering. I like elastic waist yoga pants.
• Prepare your nest for after surgery. When you get home you will not feel up to doing much. You need to have the things you want within reach. My nest includes Klenex, the remote control, my iPod, my phone charger, my laptop and a book. Do not try to read anything very intellectual during this time. I'm currently reading the Southern Vampire series.
• Get your hospital bag ready. Mine was very basic: elastic hairbands, toothbrush/toothpaste, a phone charger, slippers and a lightweight robe. I wish I remembered my iPod. I wore the clothes to the hospital that I wore home: V-neck T-shirt with neck band cut out with elastic yoga pants. You will not need more than this.

When You Get Home:

• Take it easy. You do not need to resume Mom job. If the house gets messy...who cares?
• Take stool softeners. If you do not move bowels within a couple of days move to a laxative. Pain killers cause constipation, and the longer it takes the worse it gets. Truse me.
• Wash your hands and take care not to get an infection. Don't create a nightmare out of something that should be happy.
• Move onto anti-inflammatories as soon as you can. They will help promote healing and why stay on constipating pain killers longer than you need to? I take Alieve since I only need to take it every 12 hours.
• Take picutres. It will be nice to see how things change as the swelling decreases and the brusing go away.
• Take it easy. I know that it is hard. That is why I put it twice.

Reconstruction...I'm back to a pair!

I'm back to a full load again...not my marbles (they're still lost) but "the twins". I had a DIEP flap surgery on July 29. In normal people speak, the plastic surgeon used tissue from my tummy area to build a new breast mound. It is a long surgery because it includes microsurgery connecting blood vessles...I was in the OR from 8:30 to 2:30. I spend 48 hours in ICU because the staff needed to monitor the new breast and make sure it took. I spent another day in the hospital to make sure things were going well and have been home getting better every day. When I came out of surgery, I had four drainage tubes: two from the breast and two from my abdomen. I left the hospital with three, and now have only one tube. I get to wear a very unsexy and uncomfortable surgery compression garment for six weeks.

Mending Bridges

I've had a wonderful spring. Although I hate testing season, it went by faster than normal and we've had another graduation and celebration of the future for our students. We've had another addition to our family, Miss Tiffany. She has had a tough life and was kicked out of her house just before her nineteenth birthday. She has been a blessing to us and it is a joy having her in our lives.

Angel is now a mother of a beautiful little girl named Alexis Ann named after her Aunt Lexie. We have been in contact through the telephone and FaceBook and I have got to meet her baby girl. Time heals all wounds and we've moved on from the pain and want to be a part of each other's lives. Getting back in touch with each other has been a very good thing for both of us.

In other news I'm having a big reconstruction surgery on July 29th. It is called DIEP Flap reconstruction and in short it takes belly fat and skin and makes a new breast out of that. (I *know*!!!) I will spend the first night in ICU to make sure the flap isn't rejected. I will probably spend four nights in the hospital and have four to six weeks of recovery.

Rest In Peace, Sharla

One of my beautiful friends, Sharla Schooley passed away last week. Her Celebration of Life was today, and was as beautiful as she is. She has two beautiful boys, and her cancer was found when she was pregnant with her youngest, about four years ago. She had the type of personality that made every person who she came across feel like one of her closest friends, and I had the pleasure of walking on her brother's team, Sharla Schooley's Angels, when I walked the 3-Day Walk. The picture is of the OKC girls in Dallas at the Young Survival Coalition Conference in 2009. Sharla is in the do-rag. Her smile was contagious, and her warmth was inviting. She was a woman of true faith, and her funeral today was a testimony of her life. God Speed, Sharla. I miss you!

The Sky Is Crying

There is a song of sadness by Stevie Ray Vaughn named "The Sky is Crying" that names my mood on a beautiful, sunny day. My Uncle Ray passed away yesterday morning. My heart hurts, especially for his wife and children. I can't imagine their pain.

Uncle Ray

Anyone who knows me know how much I hate cancer. I don't hate it as much for me as much as what I have seen loved ones go through when our bodies betray us on a cellular level that can kill us. My Uncle Ray has been dealing with leukemia for a while now and his immune system as well as the rest of his systems are showing major signs of wear and tear and he is now in the ICU with a ventilator. He has been in and out of ICU during his time in CancerLand, but this is scary as hell, and it is a time for prayer. Please keep him in your prayers.

Letter to and Response from Dr. Susan Love

I resigned from Dr. Susan Love's Army of Women and sent a quick reason why...I have copied my short note and her novel of a response. I am not pleased with her answer.

My note:

I just wanted to let you know why I'm leaving the AOW. I was diagnosed at 34, stage IV because I was "too young." I felt that Dr. Love would be an advocate for all women with breast cancer, but that obviously isn't the truth. I feel like I've been thrown under the bus.

The Response:

Hi Amy,


I have read and listened to all of the calls and emails that have come into the Foundation and the Army of Women since I first appeared on TV talking about the new United States Preventive Services Task Force guidelines. It’s very distressing to me that many of you think that I’ve abandoned you and your concerns.
I have spent my entire career working in the breast cancer field. I want to find an end to this insidious disease. If I thought that these guidelines would harm women, I’d be the first person to speak out.
These guidelines are just that—guidelines. The guidelines aren’t saying that women between 40-50 should never have a mammogram. Women under 50 who are high risk should have a more intensive screening program that includes mammography. Women younger or older than 50 who see or feel a change in their breast should have a mammogram or ultrasound so that the problem can be diagnosed.
What they are saying is that a careful review of the scientific evidence shows that in younger women of average risk the risks outweigh the benefits of routine screening. Understandably, this is a shocking statement to hear, as it completely contradicts the “women should get an annual mammogram starting at age 40” recommendation that we’ve been hearing for the past decade.
What many people don’t know is that this recommendation to extend screening to women under 50 was fraught with controversy. The decision was not based on evidence; it was based on political will. Virginia Ernster wrote an excellent article about this in the American Journal of Public Health in 1997(http://ajph.aphapublications.org/cgi/reprint/87/7/1103.pdf).
Since then, we’ve become even more focused on the need for health care that is evidence-based. This is not just because of the cost factor. (The evidence may show that a more expensive drug or procedure is better, and that’s what we will need to then follow.) It’s because studies have shown us that treatments or tests we thought would be more effective were not. That’s why research is so important.
The problem with mammography in women under 50 is that it doesn’t work very well. Breast tissue is dense in young women and appears white on a mammogram. Cancer also appears white on a mammogram. This means that trying to find cancer on a young woman’s mammogram it is like looking for a polar bear in the snow. As a result, mammography misses many cancers in young women. And not only does it miss many cancers– giving a false sense of security–it also finds many things that are NOT cancer but need to be checked out through biopsies or other tests. In addition, the risk of the radiation is higher in younger women and cumulative so that the additional cancers caused by the radiation have to be weighed against the ones found by the test. It is not as simple as we would like to believe.
The guidelines do not say women can never have mammography under 50 or even over 75, another change that seems to have been overlooked. What it says is that women need to stop and weigh their own risks and beliefs and talk to their doctor and make a conscious decision about the way they personally want to go.
Additionally the guidelines do not say “never do breast self exam or touch your breasts again.” The data shows that formal four-position 20-minutes breast self exam is no better than the usual poking around we all do. The guidelines continue to suggest that women be aware of their breasts; they just do not recommend that physicians spend time training women in formal BSE. Most cancers in women under 50 are still found by the woman herself and not screening mammograms.
Finally, another point that has been missed by the media is the recommendation that mammography be done every other year in women 50-75. This too is based on data. The magic of 50 is menopause. As a woman’s hormones wane her breast tissue becomes less dense and the mammograms become easier to read, shifting the risk benefit balance.
The real issue is not whether mammography can find cancers but whether it can find them at a point that will make a difference in the outcome. The problem is that it is really the ability to find all cancers early that is being questioned. We now know that there are at least five different kinds of breast cancer and that some are so slow growing that it doesn’t matter when you find them, they would never kill you. Others are so aggressive that they will have spread before you can see them on a mammogram. It is only some of the kinds where you can make a difference with screening and it is mostly in women over 50.
What I hope these guidelines will do is push doctors to have a conversation with their patients about the risks and benefits of mammography so that women can make a decision that is right for them. If, knowing the risks, you want to have a mammogram, that should be your choice. But you should also know that mammograms are not all that good at detecting breast cancer in women under 50, so that you can be alert for any changes you see in your breasts. If you are high risk, you and your doctor should develop the appropriate screening program for you. Depending on your age, and your breast density, this might also include MRI. And no matter how old you are, you should see your doctor if you see or feel any changes in your breast.
I had nothing to do with formulating these guidelines but if you look back at what I have written over the years, it is consistent with what I am saying today: mammography is not a good tool for finding breast cancer in younger women and we need to put our efforts to finding something better. At the Dr. Susan Love Research Foundation, we continue to both fund and do research to find something that will work better than mammography, especially in young women at risk of getting breast cancer. The Love/Avon Army o f Women is one of the Foundation’s biggest initiatives, and we continue to reach out to the scientific community to let them know that the Army of Women is here and ready to help them recruit for studies looking at the cause and prevention of breast cancer.
Also, to be clear, I have not been influenced or received any donations from any insurance companies, nor have I been bought off by our Federal government, nor do I think that these guidelines are part of a government conspiracy. These guidelines come from a respected independent group that issues similar reports on a regular basis. Their last set of recommendations was in 2002. These recommendations are based on an extensive review of the data and took years to develop. It is just coincidental that they came out during the health care reform debate.
I hear your anger. I’m angry too. But not for the same reason. I’m angry because we’ve oversold the benefits of mammography to the extent that there is no longer room to look objectively at the evidence. I am angry that we still don’t know what causes breast cancer and how to prevent it. I started the Army of Women to channel that anger into positive action. I ask that you also channel your anger and frustration into helping us keep breast cancer from going on to another generation! We can do it. We can go beyond finding cancers that are already there to ending this disease all together. But we can’t let ourselves be distracted from the goal. We can agree to disagree about mammography screening guidelines, but we cannot let up the pressure and efforts to stop breast cancer once and for all!


Thank you
Army of Women
www.armyofwomen.org

What Happened to the Last 30 Years of Breast Cancer Advocacy?!?!

Today the US Preventive Services Task Force released new guidelines recommending women start getting mammograms at age 50, rather than at 40 as previously recommended. They also recommend against the teaching of breast self exam (BSE). You can view their recommendations here, but the reasoning behind the BSE rec is that "For the teaching of BSE, there is moderate certainty that the harms outweigh the benefits."

I have a serious problem with this.

I first found my lump by a much delayed BSE, and was told I was too young. Now, women under 50 are also going to be told they're too young. I have an aunt who had breast cancer, but that wasn't enough "family history" to look at the lump that was making me nervous... all because I was under 4o...now the task force is adding ten more years onto breast screening.

Several of my friends have found their lumps through BSEs, and many have found theirs from their base line mammos...were they supposed to wait until symptoms were showing...orange peel breasts?...enlarged liver?...coughing that won't go away?...loss of vision and/or stroke symptoms?...easily broken bones?... This isn't right! I heard the term saving money thrown in more than once...so hope I die before the insurance company has to pay too much money...bull crap!!!

I feel the "task force" cares nothing about true lives and is looking at the bottom dollar. I feel sick to my stomach every time I think about it and wish effing cancer would just go away. I feel like Dr. Love stabbed me in the heart agreeing with the task force on TV...by the way, I never bought her breast cancer book because I it said I have only a five percent chance of living longer than five years. I feel like screaming again...

I hate cancer.

Woooooo...Hoooo....!!!!!

I got a phone call today with awesome news...I'm cancer free (again), baby!

Inscanity

Okay, I lied.

Every pain, ache, pain, forgotten memory is cancer.

Damn it!

I'm ready to get this over with...

Healing well

My skin looks great! I have a few small cysts that have popped up but they are much easier to tolerate than the blisters. I can feel the tightness in my muscles on my chest wall and as soon as the radiation oncologist gives the okay, I can start weight training on my chest muscles again.

I have a PET scan on October 1 that will determine if there is any progression of cancer elsewhere in my body. I keep hoping that since I'm feeling well there is no more cancer in the body, but I know that I felt well before my diagnosis and it may have come back. I will not turn myself over to fear or worry because there is nothing I can do to change it.

I continue to hate cancer. The message board I frequent continues to be peppered with messages of progression, hospice, and death. I will let myself go days without checking in because I can't handle hearing of the bad news. I've been a part of this community for over 2 1/2 years and have become closer to more and more ladies. I know their stories, about their families, and their lives...and they have become a part of my life. One death a couple of weeks ago was closer to me than any other before and it hurt beyond words. I have another friend who lives locally who is at MD Anderson right now hoping for a cure to her breast cancer. Over the last year, even with chemo, she has progressed and is hoping to get a bone marrow transplant to save her life.

I guess I'm transitioning to the month of October and crap. There seems to be a misperception that breast cancer is an easy cancer to have. I totally beg to differ. So far, I have been lucky with my treatment and recurrence, but too many aren't that lucky.

Radiation: The gift that keeps on giving...

I wanted to believe that once I finished radiation that I would start healing and there would be no more side effects. Unfortunately, the skin is in different phases of reproduction and I have two more weeks of mutant skin before it will truly start to heal. I have several small blisters and about five blisters the size of a dime. For skin that I thought was numb it hurts like crap! I am even going out without my prosthetic breast because I can't tolerate the pain. I hope I don't offend anybody with my lop-sidedness.

I went to see my regular oncologist, Dr. K. today. I know it is weird, but he is a great doctor and makes his office a very comfortable place. I can visit with him and have confidence in my treatment plan and I feel I'm part of the decision making process.

Here's the plan: I will have a PET scan in about a month followed by an appointment with Dr. K. If there is no cancer progression in the rest of my body, I will keep taking the anti-hormonal and will hope it keeps the cancer from spreading. If there is cancer, we will open the door to the chemotherapy arsenal once again and I will start treatment. He doesn't want to start treatment yet because my skin needs time to heal before any more poison is added to my body that will hinder healing.

What a week!

First, I just want to take a moment and celebrate that I am finally done with my radiation treatments!!!!! I am cooked to a crisp and swollen, but I made it.

This week was long not on MY part, but Chris'. Tuesday he had a colonoscopy. No big deal, just a lot of sitting in a waiting room while he got the "good stuff" for his scope. Everything looked good, and he is happy he can eat all the popcorn and grapes he wants to eat.

Wednesday morning he had an eye appointment. He has been complaining about fuzzy vision for about a month, and it turns out that he has blindness to the bottom third of his left eye. The optometrist was concerned enough to send him to a neural opthomoligist the next day, which was yesterday. He ran many of the same tests as the first doctor, but ordered an MRI giving two options for the reason of the blindness: either early stage Multiple Sclerosis or an optical nerve stroke. We waited in the waiting room for almost an hour while waiting for the insurance company to schedule the MRI before we were sent home to wait. We finally got a phone call and the test was scheduled at 9:00PM. We finally got home from the MRI just before 11:00, and each of us had a restless night worrying about the prognosis. Chris got a call early this afternoon from the specialist and it was an optical nerve stroke. There is less than a five percent chance of recovering the lost vision, and Chris is crushed. He has a follow-up appointment in a month to check for progression or stabilization.

I have an appointment with my regular oncologist next Thursday to find out what it next... the fun life of a cancer patient.

OH! Angel had her baby: Alexis Ann last night. I don't have specifics...but she is healthy and beautiful.

The Do's And Don'ts of Radiation Treatment

My mind goes in weird circles when I'm trying to sleep at night, and I just thought I would put into writing what worked and didn't work for me:

Don't

• Don't buy expensive radiation creams and salves...they don't work any better than what you can get at your home pharmacy. My favorites are Udderly Smooth, Neosporin with Lidocaine, A & D Ointment, and Aloe Vera with no alcohol and no coloring.
• Don't scrub the area that is being treated. Treat the skin as if it was paper.
• Don't be afraid to ask for help...you will get tired.
• Don't go out in the sun without full sunscreen, even on the areas that aren't being treated.
• Don't be stupid like me and put deodorant on!
• Don't use anything scented...it will irritate your skin.

Do

• Take naps when you can.
• Drink LOTS of water.
• Apply one of the above named creams at least four times a day.
• Ask questions when you are with the doctor and getting treated. I asked questions about everything from what the walls were made of to why the machine sounded like the old dial-up modems.
• Whatever it takes to feel comfortable. I also asked if they could play music when I was in the room alone.

I will try to come back and add to this as I think of things. I just wanted to get this out there...

Ewwwww!

First, I am counting down the days until I'm done with radiation. SIX MORE DAYS! It hurts, it is ugly, and it stinks! I have not been wearing any kind of deodorant under my left arm because everything I have tried irritates the skin, even the stuff made for people going through radiation therapy. Today during my treatment I apologised for stinking so bad, and I was told that it was the burnt skin and not sweat that stunk. EEEWWWWW! I don't know why I'm so grossed out because I have been looking at it every day when applying creams and getting out of the shower...but the ugly happened gradually. Did I mention I only have SIX MORE TREATMENTS?!?!?!

Friends Rule!

Last weekend with a little help from friends and family I got to go to Chicago to see if I qualifed for a drug trial for my particular type of cancer. I also got to see a group of friends that I have become very close to since my recurrance in May. I was already friends with two of them because one is in my treatment group (Ruth) and the other was a host when I needed a place to stay in Dallas during the Young Survival Coalition Conference last year (Becca). Jen, one of the gals from Chicago had a recurrance almost in the exact place and is doing the chemotherapy I will start next month and she will start radiation that I'm taking now...add on the friends everybody else had and we had a little group that got together at one time in Chicago almost by accident at one time. I didn't know as many of the people on the boards since I mostly "stalked" instead of typed, but I am so glad I got to meet the rest: Pam, Lesley, Tracey, Chex, and Cassie. There are so many women I haven't got to meet but every time I connect with a lady who has overcome this crap and made it on a better side I can't help but stand in awe.

Ouch!

I messed up taking care of my radiation area. I haven't been taking care of the whole area and I put anti-persperant on every day after my rads because I hate the sensation of sweating. I don't know why I didn't but I never applied the radiation lotion under my arm pit...I guess I never thought it would be "cooked" like the rest of my area. If I paid attention I would have known... dang. The color of the toasty area is a mixture of red and black...like a too dark tan that is only getting darker. It hurts like crap and I haven't been able to sleep well. I finally complained today and have a patch thing over the area today and a cream with lidocaine. I wish I took better care of that area because I am not a fan of pain. The good news it I only have twelve more treatments.

Pictures From Chris' Weekend

SURPRISE....almost...

I have been very busy in the last week. Even though Chris' 40th birthday isn't until August 31st, I helped orchestrate a birthday celebration to include his family last weekend, and the surprise held until the day before. It was okay because everybody involved had a great weekend and Chris was still surprised with the extent of the surprise. Most of his family got to come Friday, but the real celebration was after everybody who could show up was here. I reserved an area at Chris' favorite restaurant and ordered lots of ribs and other bar-b-que. They set up a buffet for us and hid a beautiful and tasty cake made by Lexie's sister Morgan. The wonderful evening was topped off with a wonderfully decorated lawn and a wonderful visit. We got to keep Jeff and his family to ourselves when everybody else retired to the hotel and went home Sunday.

I started back at school this week and will get kiddos on Thursday. I am super-excited...really!!!