1 YEAR BREAST CANCER SURVIVOR!

Trevor has an appointment to return to the Cystic Fibrosis clinic on October 15th. He will have been on the steroids for 1 month. They will do pulmonary function tests again, sputum cultures and more than likely blood tests again. Hopefully the staph in his lungs will be gone and the IGE level which is indicating that he has Aspergillosis. He seems to be feeling better and breathing better and has even gained a few pounds, so I am hoping he will have good results on the 15th!

Not so great news from the CF CLINIC~

So, I took Trevor to his 3rd visit to the CF Clinic in the last month. It all started because on the first visit in August, his pulmonary function tests were at an all time low....blowing only in the 50's. ( His all time his is a 213). So we chalked it up to severe allergies. Also, his IGE level was high, but not as high as it was last November. They question whether he has the fungus Asperguillus. The last two clinic visits did not find any bacteria growing. They did not hear anything in his lungs.  He did another sputum culture yesterday along with another blood test and they should call today with the results. He only blew in the 50's yesterday, and they heard mucus in his lungs, so the bottom line is that they wanted to put him in the hospital for a week of IV antibiotics. Since he hasn't been hospitalized since he was 3 months old, I opted to try a couple of more weeks at home to see if we can get him better. This of course entails a very rigorous treatment schedule along with his meds.  They prescribed Kflex antibiotic and he is doing more time with his vest and albuterol nebs. He is also taking flonase, flovent, azythromicin, ursodol, allegra, periactin, and his 15 or so creon capsules everyday. If he has the Asperguillus, he will have to either take oral steroids(which could have side effects), or he would have to take IV steroids as an outpatient for 3 days ( he would have an IV in his arm for 3 days), or be admitted to the hospital for 3 days for IV steroids. It is frustrating, but we have always looked at CF as a challenge, not as a limitation. Trevor continues to excel at sports and school. He is amazing and he is a fighter! Some good news about Kalydeco, the new drug that was approved for one gene mutation of CF. They are currently working to get this drug approved for Trevor's gene mutation (Double Delta F508). The clinic is working with 18 year olds and above, so the next group will be 12-18 year olds and Trevor will be 12 in July. This drug has shown amazing results with CF patients and definitely could be the answer to our prayers! Until then, though, we will do our best to keep Trevor's lungs as healthy as possible! Am I heartbroken that I can't make Cystic Fibrosis just GO AWAY?  That I have to watch my son be out of breath after walking up 5 stairs?? Him being exhausted because he is not getting enough air YES, but I don't have the luxury of sitting around crying about it. We have to be strong and FIGHT! Trevor is the strongest willed kid that I know and I am so proud he is my son!

Our Cystic Fibrosis Float in this year's festival~

Promoting awareness all the time to find a cure for CYSTIC FIBROSIS~

FIRST DAY OF SCHOOL 2012/2013

Trey, 3rd grade, Tristan, 8th grade, Trevor 6th grade

STUCO
Trevor 6th grade class rep
Tristan 8th grade historian

Trey's first day of 3rd grade

Our baby is turning 9 years old~

Daddy and the boys on August 11, 2003

It is hard to believe that our youngest son, Trey, will be turning 9 years old on Saturday. I love you with all my heart and hope all your dreams come true my little man. I am so very proud of you and blessed to be your mom.

Trevor is going to MIDDLE SCHOOL~

I must admit I am happy for Trevor. I am also a bit aprehensive that he is changing schools. I hope everything goes well for him in all aspects, especially his health.Cystic Fibrosis can make everything more difficult.  We have been so blessed with his good health so far. I hope he can make the transition to middle school without any problems. He is such a great kid. Laughs more than anyone in this house! I love him for that! He got a new haircut for school. I think it makes him look older. I am sure not ready for my kids to grow up, but there is no stopping them. I am so proud of all of them. Trevor himself has been a miracle child....battling this terrible disease and still always positive, making honor roll grades and playing sports. He has won 4 baseball championships in a row! He plans to do science olympiad and academic bowl this year! He goes back to the CF clinic on September 10th. Hoping for a good report. Hoping for a cure or at least a chance to be in trials for the medicine that could cure him. But for now, keep up the good work Trevor!

Two tattoos for me~

I went to a medical tattoo artist yesterday at the KU cancer center plastic surgery office. I am totally amazed by what can be done to restore a woman's breasts! Amazing. 3D tattoos! I actually feel quite normal again. I now am done with the reconstruction process. I don't have to go back to KU cancer center until December for a check up! The tattoo artist gave me the above picture and how appropriate it is. LOL I am very happy with all of the medical care I have received from KU.

Fitness dilemma~

Why is it so easy for some people to stay fit? Have they always been fitness fanatics or is there just some natural cause that makes them want to get up at 5am to exercise? LOL I know, like me, for most people it is a struggle to do what we all know is best for us. We say that we are tired. We don't have enough time. It is like a vicious circle. We all want to be more energetic, yet we have no energy to become motivated enough to workout like we need to. The truth is, we have to force ourselves to do the right thing. We have to work at maintaining a regular regime of exercise, but not only that.......there is FOOD as well. I love food. HA HA So we have to constantly struggle to keep our calories low and deprive ourselves of the junk food we so desperately want to consume. The up side to all of this is that if we exercise and eat right we will maintain our health and even maybe add a few years to our lives. So I am doing what I can to maintain. I want to feel good everyday....I want to have more energy and live longer. I want to reduce my risk of cancer.

Thankful and relieved~

I guess you really can have a mammogram after a mastectomy and with silicone implants. LOL I went to the KU Cancer Center yesterday and they did a 3D mammagram (new technology) on my right breast....the one that had the 3 spots of cancer last year. I was quite nervous for the obvious reason.....that there could have been cancer cells left behind at the time of the surgery. That they didn't get everything and I would be back at square one, but that didn't happen. They said the mammogram looked good and had no suspicious masses or irregularities. I was also concered that the mammogram would compromise my implant, but surprisingly enough, they did not put the implant under as much pressure as they do regular breast tissue. So, all in all it was much easier than I thought it would be. My breast surgeon, Dr. McGinness, examined me and said I didn't have to come back for 6 months! I have to have another 3D mammogram in 1 year. I also visited with my plastic surgeon, Dr. Ponnuru. He said I did not have to come back for a year to have the implants monitored! I still have to make an appointment for a cosmetic issue, but that is it! I am so very happy at this point and very relieved that 6 months out from my mastectomy....that all looks good! NO CANCER!!! Way to go GAIL FRAZIER! ♥

Mammogram after a mastectomy???

Well, tomorrow will be my first check up with my breast surgeon since December 9th, when I had my bilateral mastectomy. I had clear margins when the surgery was completed which means the cancer was contained....it had not spread anywhere else. I received a call today from Dr. McGinneses' office and her nurse told me that because my margins were too close after the surgery according to the pathology report, that now I have to have a diagnostic mammogram on the right breast. I know all you women out there know how uncomfortable a mammogram is on regular breast tissue, but I have two 500cc silicone implants...with no breast tissue. I don't see how they plan to squeeze and smash the right breast with the implant, but I guess I will find out tomorrow. I just want good news and I will be happy no matter what if I get good news! I also have to go back to the plastic surgeon tomorrow. I have just a couple of cosmetic things to get completed and I need to get it scheduled.

Breast Checkup~

On June 12th I am going back to visit with my plastic surgeon at KU. I have a couple of more cosmetic issues to be dealt with and hopefully after that....I will not have to go back for a very long time. I am also going back to my breast surgeon that day as well. She will check for any signs of cancer. Hopefully, all will be well. I am feeling good and think that I truly have kicked cancer's butt! I will have to be checked regularly though, now, for the rest of my life.

ME AND MY BOYS~

Jason and I in 2007~

My baseball boys...LBSA

Tristan

Tristan~Shortstop

Trey~3rd base

Trey

Trevor

Trevor plays Shortstop

Trevor's Clinic Visit~

May 7th, we went to the Cystic Fibrosis Clinic at Children's Mercy Hospital for Trevor's normal 3 month checkup. This time however, it had been 5 months. LOL At any rate.....he did fantastic! Broke his personal best record for his pulmonary function tests and also gained approximately 1 pound a month for a total of 5 pounds and grew almost an inch in height! He had a chest x-ray which came back normal and his sputum culture showed only normal flora....NO BACTERIA!! He will have blood drawn in July along with another glucose test. I am so happy he is doing so well. Thankful everyday!
He is currently playing on two baseball teams and doing soccer as well. I think one of the reasons that Trevor thrives so much is the fact that we have always kept him very active and have never treated him different than our other 2 sons who don't have CF. We don't keep him in a box! He does everything!

PFT's

Pulmonary Function Test

Trevor and I goofing around while we were waiting~

Tristan and Trevor playing for their HEAT teams~

Trevor

Trevor pitching~

Tristan

Tristan pitching~

Getting with it~

Ever since I was diagnosed with breast cancer on October 3rd, 2011, I have been telling myself that I need to take better care of me. Well that is not as easy as it sounds....so I make excuses for the reasons why I am not doing it, such as, we are too busy, the kids keep us running most of the time, or, I will start tomorrow, I will do it later, I have a headache today, I am tired today, I am working today. Crazy idiotic excuses made by me to make myself feel better for not being the best me that I can be. I am not overweight, but I am not healthy either. I also have the fear of course that at some point the cancer may come back. Well, I am not doing anything to prevent it...such as a good diet, daily exercise. Granted, I am careful with my exposure to the sun, again, I am not overweight, I don't smoke (never have), but I need to eat a healthier diet and do a daily exercise routine. I also need to drink more water and cut out diet Dr. Pepper for which I am totally and utterly addicted to. LOL Why is this so important? Because I need to reduce my chances of getting cancer again because I have 3 of the most wonderful sons that anyone could have and they are depending on me to be here. I want to see them graduate from high school, go to college, become something fantastic, get married and have some grandkids someday. So, with that said, I need to get up of my lazy keister and start doing what I need to do. PREVENT CANCER. Get in shape, have more energy and quit making excuses for why I can't get it done. I owe it not only to myself, but to my sons.

Surgery ~

Well I had another surgery yesterday at KU. Dr. Ponnuru, my plastic surgeon did a great job.. I am now the proud owner of two 500 cc silicone implants. I felt really bad yesterday....nauseu and all, but woke up this morning feeling much better. I have to go back in a week to see the doc again...He was contemplating another surgery which would be to take fat  from my stomach ( which would be a good thing) and add it up top for a fuller look. The bad thing would be that they would have to put me to sleep again to do that... Not sure if I am up to that, but I will just wait and see what he says. At any rate...feeling good today and thankful for another step in this long process to be over with! They even gave me a card with the implants they put in on it....I am supposed to keep it for my records. LOL The surgery yesterday was only about 1 1/2 hours. We had to be there at 5:30 am and I was home by 2:00pm which was very nice!

Doctors again~

Well, tomorrow I have to go back to see my plastic surgeon at KU. This will be the last appointment before my final surgery on April 11th to get my permanent breast implants. I can't wait. I am not looking forward to being put to sleep again, but I know that I will feel much better without these expanders and with normal implants.  I also have to go tomorrow to my dermatologist for a checkup. Six months ago, I had a mole removed that was squamous cell carcinoma (skin cancer). They removed the mole along with a good chunk of flesh to make sure they got all the bad skin, but now I have a nasty scar on my shoulder and am now a shade seeker and avid umbrella  and sunscreen user. LOL Take care of your skin. The sun is very harsh. I hope he says the spot looks good.

WORDS CAN HURT~

None of us are perfect parents. Most of us do our best to be the best parents we can be. However, there are parents out there that are abusive, neglectful and hurtful. Sometimes we get mad and say things we don't mean. Tell your child you are sorry and that what you said was a mistake. Be positive with them. Tell them there is nothing they can't do as long as they work hard. Be a positive role model for them. Be careful what you say and think before you speak. Our children depend on us for much more than food and shelter. They need love, support, nurturing and a positive environment. The not only need it, but they deserve it!

St. Patrick's Day~

So far so good~

It has been 3 months since my surgery.....so 3 months cancer free and now 1 month away for what I hope is my last surgery ever! I am scheduled for surgery on Wednesday, April 11th. I will get my permanent breasts implants then and hopefully that will be my last surgery! I will have to do some office visits for some cosmetic issues, but other than that....no more surgery! I also have to go back to my breast surgeon in June for a checkup. Praying that there will be NO CANCER!

Trey's new haircut!

Isn't he adorable!?!?!?!?

Tristan's braces~

Tristan got his braces today. He will probably have to wear them for 2 1/2 years. He is pretty excited! We highly recommend his orthodontist in Liberty, MO. If you need braces tell them Tristan Frazier sent you!

http://www.kanningorthodontics.com/

2012 Science Olympiad Regionals~

Jack and Tristan with their 1st place mousetrap car~!

We went to the regionals for science olympiad on Saturday. Our team as a whole, did a great job! I am proud of Tristan who placed in all 3 of his events. He and Jack took 1st place with their mousetrap car. He also place 3rd with Hunter in Dynamic Planet and 3rd with Caleb in Write It Do It. Their team missed the opportunity of going to state by 1 point in a very difficult new region. That was a tough pill to swallow, but still so very proud of all of them. Also, thankful for the teachers and coaches who worked so hard with these kids. It really paid off.

Tristan with his medals

Surgery date~

So I went back to KU today to visit my plastic surgeon, Dr. Ponnuru. I really like him... such a nice guy! We have a surgery date scheduled for my permanent implants. The date is April 11th. I can't wait! I have 460 cc's of saline right now in each breast. I am trying to decide whether to get slicone or saline implants.  I will have to do some more research to make my decision. Needless to say, these expanders are not natural feeling at all. In fact they could and should be compared to two grapefruits except for the fact that a grapefruit is much softer. LOL I have been told that the permanent implants are wonderful and that the exchange from the expanders to the permanent implants is nothing short of miraculous!  I have also found out that I will not have any drains this time! So happy about that! The surgery should only take about 1 1/2 hours and I get to come home that day! Looking back now, this whole thing has not been that bad! I think when I was diagnosed with cancer last October....I was just so fearful that something bad would happen and I wouldn't be here to raise my kids, but I overcame that, and beat it.  It is crazy! When you hear the word CANCER, it immediately raises ones blood pressure and it is scary as hell but, nothing was as painful as I imagined it would be and nothing was as scary as I thought it would be, so all in all...I am very happy and blessed at this point! :)

Tissue Expansion~

 

Expander Implant
Post Mastectomy Reconstruction

Post mastectomy reconstruction with a tissue expander and implant involves a staged approach. A tissue expander is a temporary device that is placed on the chest wall deep to the pectoralis major muscle. This may be done immediately following the mastectomy, or as a delayed procedure. The purpose of the expander is to create a soft pocket to contain the permanent implant. Tissue expanders are available in a variety of shapes and sizes.

Placing the Expander

At the time of the initial post mastectomy reconstruction operation, when it is first positioned on the chest wall, the tissue expander is partially filled with saline. Within a few weeks after this surgery, once the patient has healed, expansion can be started as an office procedure. The process of expansion takes place at one, two or three week intervals over several months. The timing of expansion can be coordinated with chemotherapy treatments. The amount of fluid that is placed into the expander at the time of the initial surgery will also determine how many expansions are later required. Today, with the use of a dermal matrix (such as AlloDerm®), the surgeon can usually place a higher volume of saline during the initial surgery. This may decrease the number of expansions needed later. The patient will be well on her way to having an immediate breast shape after the first operation.

Most expanders have a fill port that is built into the front of the device. This port is accessed with a needle through the skin. Expansion takes about one minute, and the amount of fluid that is placed is limited by the tightness of the patient’s skin. A typical volume for each expansion procedure is 50 cc's of saline (an equivalent of 10 teaspoons). Most patients do not have significant discomfort or pain after expansion. Discomfort can generally be managed with Tylenol, and the tightness should subside within 24 hours. 

Once expansion is completed and the patient is medically cleared for another operation (about one month after chemotherapy), the second stage of reconstruction is performed. This is an outpatient procedure that involves exchanging the expander for an implant, and creating a more refined breast shape. The initial tissue expander placement, and subsequent exchange for an implant, each take about one hour in the operating room.

This is the procedure that I am currently in the middle of.

Information courtesy of  BreastReconstruction.org

Very promising news for a possible cure for TREVOR!!!!!!

Trevor, who is now 10 years old and in the 5th grade is doing really well. He is rarely sick and is an honor roll student. He plays football, basketball, soccer and baseball. He is one terrific kid. However, we are waiting and praying for a cure for the genetic chronic illness he has called Cystic Fibrosis. The following article gives us so much hope and is very promising for his gene mutation which is double delta F508, the most common CF gene mutation. C'mon.....lets make CF stand for CURE FOUND IN 2012!!!!



http://www.cff.org/aboutCFFoundation/NewsEvents/1-31-FDA-Approves-Kalydeco.cfm

I'm still standing and amazed~

Well, as it stands right now, it looks like a couple of more fills to my foobs (fake boobs) and then there will be probably a 6 week waiting period to make sure all the scar tissue has healed before I can have the surgery for my permanent implants. Each breast now has 385 cc's of saline.....we are shooting for 450 in each. This amount varies for different women depending on how big they want their breasts to be and what size women they are. My chest wall is not very wide so the plastic surgeon said we have to be careful how big we try to go. He wants them to look good of course so I am putting all my faith in him. I am very pleased with him so far and trust him. You also have to put more in the expanders than you may actually may want size wise, because with the epanders are also ports to inject the saline in, which will be removed when the permanent implants are put in. The expanders that I have now are still uncomfortable, but I think I am getting used to them....if you can ever get used to them, but I won't have them for much longer. I am hoping to have surgery for my permanent implants during the last part of April if all goes well. It is amazing what doctors can do now.... just AMAZING!

100 % seems like a lofty goal right now~

This has been a rough week. Trey has been sick all week. I have been running a fever most of the week also and coughing and sneezing my head off and my chest is already so very tender and sore. I cancelled my followup today with my plastic surgeon because of my illness this week....I didn't want to spread it up there. I just am so darn exhausted and I wonder when the heck I am ever going to feel 100% again. These expanders are so extremely uncomfortable that I rarely sleep well, which causes me to be exhausted during the day. I just want to get through this phase of the reconstruction. I just want the permanent implants done. Please.....no more illness..... no more..... set backs. I am taking Trey to the doctor tonight. He has been running a fever and coughing.....sleeping most of the time for several days now. Very unlike him. Hope he just needs an antibiotic. Send us all some good vibes please..... There is still a lot to get through.

The pain will hopefully soon be gone~

Jason drove me back to KU to the plastic surgeon's office yesterday...they filled my breasts again.... The nurse said there was a total of 345 cc's in each one now. I think this is comparable to a B cup. Sneezing, coughing, bending hurts today. Only a few more times though. This is truly the worst part, so anyone considering a mastectomy...the surgery itself is not bad.... it is the expanders and fills for the reconstruction that are painful. I am still so thankful that I chose to have the bilateral mastectomy. Everyone has to make the best decision for themselves, but I thought first of my children and the best way to cut down the chances of me ever getting breast cancer again... they need me and I need them. So my decision was the best one for us!

Get mammograms regularly~

Well, I am headed back to my plastic surgeon at KU tomorrow. I am getting my second fill for the reconstruction process. As I said before...the process of filling them does not hurt at all, but they have seriously hurt all week, so I am hoping this time...if nothing else....it won't feel worse. The expanders are uncomfortable. The pain is not unbearable pain....just annoying. Can't sleep well etc..... But with all that said..... I really should not be complaining one bit. I am as lucky as can be escaping the spread of that nasty cancer. Just a few more months and I will be somewhat back to normal....never the same, but changed.....in that my mindset is now different. I mean obviously there will be a physical change as well. So I plan to tough it out the next few months and be grateful for all I have. I am still here....still able to write this message, still smiling as big as Texas, still loving my kiddos everyday, still allowing  my husband to put up me (LOL) and knowing that he has stuck with me every step of the way so far! Much to be thankful for!

NO PAIN.....NO GAIN~

The saying "no pain...no gain" became a total reality for me last Thursday. Jason drove me back to KU to my plastic surgeon for my first fill of the expanders they put in when they did my bilateral mastectomy. The procedure itself just felt like filling up a water baloon that gets heavier and heavier....it was not painful at all. The nurse said that I would feel it in my expanders though and she was not kidding. The whole procedure probably took less than 15 minutes. By the time we walked to the car....the girls were hurting pretty bad. I was hardly able to sleep Thursday night and by Friday morning I was so stiff and in pain...I could hardly move, bend, or pick anything up off of the floor. I basically just relaxed all day...used the heating pad and took the valuim they prescribed along with motrin. Well, the good news is that I woke up this morning feeling a little bit better. They still hurt, but at least I can move some. I managed to gather up the laundry and get it started. Hoping the fill next week will not be so painful, but either way...it is something I have to get through and get done. I should only have to have about 3 more fills.....then there is a 6-8 week waiting period before I can have the surgery for the permanent implants. Hopefully the last part of March or early April. I can't wait....Thanks again for your continued support. And thank God the cancer is gone...

Breast Cancer Stats~

An American woman’s chance of being diagnosed with breast cancer is:

from age 30 through age 39 . . . . . . 0.43 percent (often expressed as "1 in 233")
from age 40 through age 49 . . . . . . 1.45 percent (often expressed as "1 in 69")
from age 50 through age 59 . . . . . . 2.38 percent (often expressed as "1 in 42")
from age 60 through age 69 . . . . . . 3.45 percent (often expressed as "1 in 29")

According to the National Cancer Institute. I was one in 69 and only found it via a mammogram.


For every 1,000 women who have a screening mammogram:

100 are recalled to get more mammography or ultrasound images 20 are recommended for a needle biopsy ( I had 3) and 5 are diagnosed with breast cancer.

Leave it to me to be one of 5 out of 1000 women. I recommend that every woman gets an annual mammogram.

http://www.cancer.gov/cancertopics/factsheet/prevention

Make every moment count~

One day your kids will look back on their childhood memories.....make sure when they do....they have something to smile about!

My boys with their silly mom!