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Tuesday, July 27, 2010

Road Trip! The DIEP Flap Reconstruction- San Antonio

Hello everyone!  So last week I finished my last chemo session.  Hurray!  So with radiation quickly approaching in the next few weeks, I had to decide what kind of reconstruction options were available. I traveled to San Antonio on Sunday to stay in a hotel and get up Monday to visit with some doctors who are highly skilled and knowledgable with the DIEP Flap procedure I have been researching. This is not an implant surgery.  With most implant surgeries, the use of expanders are necessary and put in place before radiation.  They are filled every two weeks to stretch the skin, and sometimes skin graphs are necessary.  With this, often comes a great chance of infections & pain.  Also, there is the inconvenience of an extra surgery.  I had been researching a new procedure called the DIEP Flap, Deep Inferior Epigastric Perferator Flap.  This is different than the TRAM flap, where the breast are rebuilt from an abdominal muscle and tissue that is "channeled" under the skin up to the breast.  This often causes complications with sitting up and using the abdominal muscles which have been partially removed. This tissue is still attached to the lower part of the body, but runs like a "tram" under the skin so that it has blood supply.  With the DIEP FLAP procedure, the belly fat and skin along with blood vessels from the groin area are completely detached with incisions across the lower tummy, like a tummy tuck procedure.  The breast shapes are then cut out of the tissue and shaped.  The surgeons work under a microscope using microsurgery techniques and reattach the arteries and veins using suture material barely visible to the naked eye.  The surgery is long and tedious and requires highly skilled surgeons.  Currently there are about 40-45 surgeons in country performing this procedure and 5 of them are at a facility in San Antonio, Texas.  They are the Plastic Reconstructive & Microsurgery Associates.  They perform over 500 a year.  If you google "diep flap San Antonio" their site will come up in the top few.

There are many benefits to this procedure.  First of all, no surgery for expanders.  This procedure uses your own natural living body tissue and because of this, their is little risk of infection or rejection.  The surgeons are moving healthy, non-radiated tissue up to the chest area.  The appearance is more natural looking than implants, and you get a "tummy tuck" with a much flatter, attractive appearance left in the abdominal region.  The abdominal muscles are left in tact and remain strong.  So it was worth the trip to San Antonio to get all this nailed down.  Insurance of course has to be approved, but they don't seem to think it is a problem.  This group of doctors do not "balance bill" what the insurance company won't pay, which is a big plus for me. I have heard that standard reconstruction surgeries can cost in the range of $90,000.  A friend of Kevin's said that is what theirs cost to the insurance company.  His wife had a Tram flap procedure done on one side and an implant procedure on the other due to the burns from radiation on one side.  I am sure this DIEP Flap procedure is well over $100,000.  That is one of those things that you won't know until everything is said and done.  It all depends on the rates negotiated with insurance companies.  Thank God for our insurance.  We found out today that they have paid out over $140,000 to date in medical payments.  We also found out that I have a lifetime maximum benefit of $2,000,000.00.  Two Million Dollars!!!  Time to start praying that there are no recurrences with this cancer and no other major medical problems.  That could add up really fast with scans and tests 2-3 times a year, and I have many years ahead of me that I will need medical coverage (I am thinking positive here). 

There is only one doctor in all of Dallas/Fort Worth that is doing this procedure, but I feel more comfortable with a "team" of doctors who perform hundreds a year and have accountability to each other.  The surgery is quicker with a minimum of two micro surgeons working at a time, so their is less time under general anesthesia.  I was really impressed with the doctors and staff.  Assuming everything is approved with the insurance, I will possibly have the first phase of reconstruction in November, about 8 weeks after radiation is finished.  This is much sooner than we anticipated and it will depend on my healing from radiation.  The second phase of the surgery is nipple reconstruction and any modifications needed.  The last phase is tattooing the nipple color.

To all my blog followers, this is probably too much information.  But to some who are facing these decisions and wondering about their options, I wanted to share this with you.  After all the abuse my body has taken in the last few months, it is good to think about getting "rebuilt" to a new and improved me.  In the meantime, I will be trying to shed about 30-40 pounds in the next 4 months before reconstruction so I can wake up from surgery with a new, healthier, fit me!  Getting off these steroids will be wonderful, and I plan on starting Weight Watchers next week and getting to the pool at least Monday through Thursday.  Being on a low-fat diet and exercising is crucial with survivors of triple negative breast cancer.  It is the number one thing that increases the chances of keeping the cancer at bay after treatments are over.  It is something I can control.  So it is now not only about looking better and feeling better, but about staying alive and extending my years.  Still love getting your comments and please join my blog by clicking "follow" on the right hand side of the page if you have not already.  Until next time my friends...

Wednesday, July 21, 2010

Seeing the Light At The End of The Chemo Tunnel

Tomorrow I am getting my last infusion of Taxol, my last chemo session.  It will be my eighth chemo total.  I am very glad to get this part of the treatment over with and done.  From what I understand, Adriamycin, Cytoxan, and Taxol, have a four time life time maximum dosage which I have received.  I know some people receive Taxol over a longer period in smaller amounts.  Basically, I have received all that I can have.  If I were to have a recurrence in the chest wall or distant metastasis, then other drugs would be used.  I don't want to think about that right now, but I am glad to know that I will never receive these types of drugs again.  The permanent side effects of these are yet to be seen.  However, I am currently experiencing neuropathy in both feet, mostly in the toes...and some in my hands.  The past few days I have been plagued with fatigue, overwhelming fatigue.  It has been hard to keep my eyes open and stay awake because I am so tired.  It is almost like my brain is not getting enough oxygen.  I am being treated again for a urinary tract infection with more antibiotics.  I have fought the bone pain again, however this time it did not seem as intense.  Overall, I am glad that I am seeing this part of the treatments come to an end.

Many of you have been praying for me and my online triple negative friend, Heather.  Heather has been in Zion, Illinois getting treatments at Cancer Treatment Centers of America.  Her cancer got worse before it got better, but I am glad to announce that she is responding well to her treatments and all the natural therapies that she has done.  Her tumor markers the other day went to zero!!!  Amazing!  To think she was told to get her affairs in order...God has other plans for her.  Thanks to everyone who has been praying for her. One thing I can say about CTCA is they approach healing from every angle.  They provide nutritional counseling, lifestyle coaching, emotional and spiritual counseling, and the latest in medical science.  They believe in the whole circle of healing.  Another friend of my sister's is getting treatments there and gets acupuncture while she is hooked up to her chemo.  She has it arranged, but just the simple fact that they allow it to be done in there facility says a lot.  If my disease ever advances I will definitely consider going there for treatments.  Go Heather!!!!  I am so happy for you, keeping the faith and being so courageous to keep fighting and not letting Satan steal your hope!  Thanks to everyone for your prayers, and keep them coming for us both.  Thanks to all my blog followers for giving me an outlet to write about my experiences.   Also, I thank you for all your encouragement during this time.  It has meant the world to hear from you.  Leave me a comment.  Until next time my friends...

Thursday, July 15, 2010

Looking forward to the Last chemo!

Well friends, it has been one week since my 7th Taxol chemo took place.  What does that mean?  It means that I have exactly one week before my final chemo session happens.  It will be almost exactly four months after my double mastectomy.  These were four hard, long, educational months, months that give you a whole new outlook on life, love, family, and your health.  Being diagnosed with triple negative breast cancer is definitely educational.  Why?  Because most people have never heard of it, or they can tell you very little about it.  So the search is on...on to find everything out that one can about this nasty horrible disease.  In a nutshell, I am going to enlighten you about what I have learned. 

Triple Negative Breast Cancer (TNBC) affects women who are mostly under 40 years of age.  The majority are African American young women, and several are Latino.  Most will express mutations in the BRCA1 and BRCA2 genes which means a 70% chance of having breast cancer in one's lifetime and a 40% chance of having ovarian cancer.  I myself am 42, Caucasian, and negative for either of the gene mutations....a rare breed so to speak. Very little is known about TNBC except that it does not express receptors for estrogen, progesterone, or HER2 like most breast cancer tumors.  Tumors that are positive for these receptors are now more easily treated after normal therapies with drugs like Tamoxifen and Herceptin and others that block the hormones from feeding the tumors.  TNBC tumors are not fed by these hormones and there are no drugs to follow up with after chemo or radiation.  Chemo and radiation are the only current treatments for TNBC survivors.  TNBC has a higher recurrence rate, a higher mortality rate, and a much greater chance for distant metastasis.  This kind of cancer will often spread to the brain, lungs, liver, or bones.  The time frame for metastasis often peaks between years two and three.  These years are crucial.  Once a metastasis-free time period of 5 years has passed, one is virtually out of danger and considered cured.  These tumors are rapidly growing, very aggressive types.  Their cells often have up to a 60% chance of leaking out and looking for someplace to land and grow into more tumors in other areas of the body (stage iv).  Chemo will fail in 50% of these cases and the disease will recur or advance to other areas. 

TNBC occurs in only about 10-15% of all breast cancers, but accounts for about 25% of all breast cancer deaths.  Therefore, there has been a push for more research in this area.  It is considered the "hot topic" in breast cancer research.  It is an area that is widely unexplored and is in desperate need for some breakthrough new treatments.  These are the highlights of what I have learned about the disease and my diagnosis.  So coming to the end of the chemo is exciting and scary.  Now comes radiation, more surgeries, and then the waiting game...  Better yet, trying not to play the waiting game.  The biggest challenge is getting on with your life, focusing on quality not quantity.  Any cancer diagnosis changes the value you put on today, making the most of every moment.  This is hard during treatments, because many of those moments are spent trying to get through the effects of the treatments.  If you are not a blog follower, please join by clicking on "follow" to the right hand side of the page.  I have spent the past few months trying to spread awareness about TNBC.  I hope to God that I have made a difference, and that I will continue to do so.  I have used my FACE BOOK as a platform for spreading awareness.  It has no longer the same social implications for me.  If there is another friend I can add or request, I do so.  It is one more person who might read the blog and find out what TNBC is.  The more people are aware, the more the public demands research and answers. The more attention it receives, the more chances for grants, money, and treatments.  I have many FACE BOOK friends who are kindly re-posting my blog link on their home page, visible to hundreds of other friends.  I have had many contacts from friends of friends of friends, who were triple negative, or had loved ones who were.  God bless all who are willing to share this info.  Many years ago, people did not know what a pink ribbon stood for, but now they do.  Soon, over the next few years, people will know what TRIPLE NEGATIVE BREAST CANCER is.  Until next time my friends...

Monday, July 12, 2010

The Silver Lining

Hello my friends!  This weekend was a hot, tiring weekend...but a great one.  The garage sale at the salon was a huge success.  My pain was manageable or it was so hot that I did not notice it as much :)  Either way, I got to go and stay quite awhile both days.  The music was great and everyone seemed to have a lot of fun despite all the hard work and the stifling heat.   I am amazed by all the people that chipped in and helped that did not even really know me.  There are good people in this world for sure!  We raised some $$ for TNBC Foundation, too!  A big thank you goes out to all my wonderful salon friends who worked so hard....Linda, Vicky, Susan, Sandy, Joyce, Carol, Mattie, Suzette, Shonna, and all the husbands.... and Ken (who spent the night in the parking lot sleeping in his truck Saturday night)....and all the others at the salon who helped spread the word and give their time.  Thank you to Patsy (MAM) and my sister Cindy and my brother-n-law Kyle and all family for all their help.    Also everyone who brought and donated items, made cookies, brought drinks and coolers.  Armstrong McCall, the salons foremost supplier has been so awesome at spreading the word and providing many tables for the sale. are awesome!  Everyone at the salon who got their clients involved.....thank you!!!!  It is not possible for me to mention everyone....I know I don't remember or know about each person....but I thank them from the bottom of my heart!!! 

So today was Monday and I woke up in a lot of pain.  I was able to kick it with the pain meds but slept for 6 hours straight.  My girls have been wonderful.  They have done laundry, vacuumed, cleaned, and just taken care of me and each other.  They are awesome and have had a lot of fun this summer despite having to deal with their mom having cancer.  I feel really blessed to have such awesome kids, and their friends are amazing.  I love having them over.  They all have offered to help me in so many ways and they have been so supportive of Landri and Presley. I am glad everytime all the kids are over here hanging out together.  Blake is Landri's new boyfriend and he was at my house at 6:45 on saturday morning with his truck to load up things for the garage sale.  He seems to be a great guy and Landri is all smiles.  Taylor, Landri's buddy, and Justin, Taylor's boyfriend are over here as well and always are offering their support and help. Taylor always gives me a big hug everytime I see her.  I feel really blessed by all the love around me.  I know my family and friends have become much closer since my diagnosis.  It seems that it is the silver lining of having cancer.  I am so glad that there is a silver lining and I am blessed with so many people in my life walking beside me on this long road. God bless all these people!  Please leave me a comment if you wish.  Until next time my friends...

Friday, July 9, 2010


Yesterday was my 3rd Taxol chemo treatment for triple negative breast cancer.  Only one more chemo left!! Yippie!  The bad news was that my white blood count was in the dangerously low levels so they would not let me skip the Neulasta shot this time.  This means some more serious pain coming my way.  Actually it has already started to creep in.  I began taking my pain medication this morning.  Tomorrow will be the third day since treatment and that is normally when it gets really bad and persist for about a week, maybe more with this NeulastaNeaulasta is an $8250 shot that hangs out in your system until it is needed to trigger bone marrow to produce white bloods cells.  This can cause some pretty serious bone pain.  For me, it greatly increases the pain of the Taxol treatments, which causes me most of the crippling pain that I experience in my joints and bones.  I am praying to feel good this weekend.  I need a miracle.  Why?  Because I have some amazing people doing some wonderful things for my family and I would like to be there to witness it all happen.

Vicky, my best friend of 18 years now and so many of my other co-workers have organized this huge garage sale to benefit me and my family's extra expenses of medical and me not working, etc.  Clients from everywhere and other salons have brought things and many have donated tables, clothing racks, and there time to help out.  Saturday will go from 8-6 with an Elvis tribute performance artist, and an "I love Frank Sinatra" singer at the gazebo.  Sunday will be the Russel Dorsey Band, a Big Band Swing group who are very popular locally.  All this for me?  Still can't believe it, but I am feeling the love!

My girls, Landri and Presley,my niece Leah, Cindy my sister, and many of their friends are helping out as well and volunteering their time.  My family will be running a table selling pink lemonade, breast cancer pink ribbon hats, visors, key chains, pins, bookmarks, magnetic car ribbons, breast cancer awareness bracelets, etc....100% of the profits going to the Triple Negative Breast Cancer Foundation.  They will also be handing out free publications and educational material about all kinds of different cancers, awareness and their prevention....and of course free balloons for the kiddos!  Sunday there are a large group of stylists, many of whom I used to work with from Avatar Salon, and several from The Yellow Brick Salon are coming over to do wet cuts for a donation.  So many good, generous people in this world.  Ken Cater, my friend and the new owner of the Yellow Brick has spent a lot of time carrying donated items from the salon to the empty lease space the shopping center donated to us for storage.  Linda, his mother and many other stylists have worked really hard pricing items in an un-airconditioned space...working tirelessly until there was no light to work in.  I can't express my gratitude enough to all these people who made this happen.  I just really want to be there as you can see why.  So if you are in the area, this Saturday and Sunday please come and enjoy the music and go treasure hunting at the gargage sale.  There will be drinks, cookies and such as well.  Come stop by the salon and check it out and don't forget the Triple Negative Breast Cancer Foundation table full of goodies and accepting donations. 

The address is

The Yellow Brick Salon
485 W Harwood Rd
Hurst, TX 76054

Located at the Village Plaza Shopping Center @ SE Corner of Harwood & Hurstview

Thanks to all who did so much to put this together.  What is really cool about this event is after it is all over....a church group is picking up all the leftover items and they will be having a sale for an orphanage that they have been collecting items for as well.  Recycled generosity...I love it.  I am sure there will be a lot left over because I have seriously never seen so much stuff.  I hope to be able to get out of bed tomorrow.  Right now Presley has a sore throat and stomach ache so it is possible that we both may be home tomorrow, but I will let you know how everything pans out.  Thanks to all my followers for your encouragement.  Please leave me your comments, as I love to read them.  Until next time my friends...

Friday, July 2, 2010

Cancer, Meet Me In A Dark Alley...

Good news today!  I am feeling no pain.  I was a little worried because last night late I was hurting pretty bad.  The left side of my chest wall was even hurting.  I decided to go in to work and do a few clients that were already booked with Rene.  She has moved back to Kansas.  She was taking over a lot of my clientele for me while I have been gone.  So I worked today and I am going in tomorrow to do 3 clients.  One of them called while I was at the salon today and said she had not seen me in a year because she had a lot of health problems going on in her family.  Anyways, she asked if she could come in tomorrow (Saturday), and I told her she could. I just kind of snickered under my breath because I am sure she will be shocked when she sees me...bald, boobless, looking quite attractive.  She didn't know about my cancer diagnosis.  It will be interesting I am sure.  So I was a little worried last night when I was still having some significant pain.  I was wondering if I would make it in to work today.  When I woke up this morning, all was well and I felt good, and I did at work as well.  I will say that standing up for 4 hours after you have spent a lot of your days in bed was a challenge.  I was so hot from just the effort of standing.  I have always been known as "the hot flash queen" at work, so it is really no different....except I am bald!  When you have sweat running down your face and you are trying to is time to take the hat off.  No hats...they just keep the heat in.  So I was truly bald and hatless for a while until I got cooled off.  We actually got a couple of walk-ins that I ended up greeting while my colors were processing.  I am sure they don't see bald hairdressers everyday.  I could tell by the look on their faces anyways that maybe they were second guessing their decision and wondering if they had walked into the right place.  I made sure they were taken care of, and I was able to put the hat back on after a short while.

So next week is my 7th chemo since I was diagnosed with triple negative breast cancer.  I have 8 total and now it is time to start thinking about radiation.  This past Thursday we went for cancer counseling, blood work, and then to meet with the radiation doctor.  I still don't know what those doctors are called....not a radiologist....hmmm....I don't know.  So we met with her and she said my case was controversial ( oh how I love being controversial:)  That normally when they see negative nodes and there was a double mastectomy they may not radiate.  However, since I am relatively young and my tumors were not ONE but FIVE and two of them being 3 cm., and because I am triple negative with grade 3 (the worst) tumors...she feels like we should.  She left the room to consult with my surgeon who actually removed the tumors along with the breast.  She too agreed that I should be radiated to help prevent recurrence.  Even in the last six months, studies have shown that younger women benefit more from radiation...bettering their chances of survival and not having a recurrence.  Triple negative has higher recurrence rates than other types of breast cancer.  So I have come this far and gone against pretty much everything I believe in when it comes to accepting this modern day toxic chemical why not?  Just radiate me...and lets get it over with.  If I can put up with this chemo, radiation should be a breeze!  They were talking about doing 30 radiation treatments, but now 25 seems to be the number.  So here I go.  I am going to let them have their way with me...finish me off with a scoop of radiation and a cherry on top.  But here is the deal...I am doing this and "doing my part", but I know who is really in control.  If God wants me to be healed, I will be healed, radiation or not.  I have heard people say that it is not God's will for me to be sick.  I will be honest.  I am not quite sure how that works, but I do know that I have left this situation up to the Lord.  I know that he takes all things and works them for good.  I also know there are a lot of people who have died and completely trusted in the Lord. I don't think they died because of their lack of faith.  We all must die sometime...our bodies will give out eventually.  I don't want my time to be now or anytime soon.  However, I am not afraid.  Living is much more scary and tough.  However, it is a challenge that I want to face.  I want to go through the ups and downs of life.  I want to hold my grandkids and watch my husband grow old, fat, and bald (hehehe ....sweet justice).  I want to live to experience all that I can.  However, if my life was meant to be short for some reason...I just want to say that I have married the man of my dreams; I have the best daughters in the world, I love my career and I built my dream salon.  I have the best friends and co-workers I could ever ask for, the best in-laws and could I ever feel short changed in life?  Ok so I am having a good day today, and I can think positive.  

Susan, one of my co-workers has a husband that has been diagnosed with pancreatic cancer.  His name is Jerry.  Please pray for them.  My heart goes out to them for all that they must face.  To my singingwarrior blog follower....I hate this cancer too!  I hate it with a passion and I wish it would show its ugly face in person... the little demon.  I wish I could meet it in a dark alley and take a baseball bat to its head and beat the hell out of it too!  I am sorry about your friends who have been diagnosed.  As a friend or a loved one of a cancer patient...the feeling is one of helplessness I am sure.  Sometimes I think it is harder on the caretakers and loved ones that it is on the cancer patient.  But all is not lost singingwarrior, I know you are out there praying for me and many others.  That means the world to me.  It makes me want to "sing" and gives me strength to be a "warrior" knowing that I have prayer warriors out there fighting for me.  It just makes me want to fight harder, and trust me...I need that motivation every now and then (because this is getting old.)  So thank you, thank you for your prayers and your words of encouragement.  Like always, I love to read your comments.  I will post them as soon as I read them.  Until next time my friends...