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Sunday, May 30, 2010

Wounded Villian

I have been feeling pretty yucky for the past week, but I am now coming around and doing well.  I have severe insomnia and nothing seems to be helping that.  Good news is I am going to spend some time with my family this week.  We are due for some rest, recuperation, and fun.  I will probably not be posting this week.  I am going to try to relieve some stress and also try not to think about having cancer.  I will leave you with a poem I wrote just 4 days before having my double mastectomy.  Have a great Memorial Day and thank you to all the veterans out there for the many sacrifices made past, present, and future. 

  Wounded Villain

Dark and deceptive he lurks in hiding
Waiting to make his move
He is the villain who haunts our sisters and mothers
Stealing from our daughters and friends

The victims of this dangerous criminal
Are bound together by strength and hope
They are all shapes and sizes, young and old
They are beautiful in and out

The wounds of his deceptions know no bounds
From broken hearts to balding heads
Scars in places unseen
He does not discriminate

He sees the pink ribbons everywhere
He fears he will be caught
For the power of pink is a stronger force
Bearing down with all its might

For our sisters, daughters, mothers, and friends
The fight has just begun
Their desire to eliminate the predator and take him down
Has joined them together by the love for the ones that fell

Her name is Survivor and she is so very strong
She is the one he couldn’t destroy
She speaks the words “we will find the cure!”
He shutters as he knows his days numbered

They call him Breast Cancer, he is weak and alone
He is losing his strength everyday
For the power of pink is too strong to endure
With the armor of Faith, Hope, and Love

Penny Nichols Navid

Tuesday, May 25, 2010

My Very Best Friend

I am feeling much better today.  I still have not done a whole lot but lay around.  But I at least feel good enough to not want to escape through sleep.  My dear husband Kevin, was juicing for me last night and Landri came into the kitchen.  She asked him what he was doing that smelled so good.  He showed her and gave her some of his wonderful concoction.  Now mind you, my oldest child has never been a "green" eater, but Landri drank it down and said "it's good....but don't tell me what's in it!"  Then today, Landri text me from school and asked me if we had anymore of that "juice stuff".  I said no, but told her I could make more.  So her and her friend Taylor came home with her and we all three pitched in and juiced some fruits and veggies.  We enjoyed each other's company and we "did lunch" out of our glasses.   It was nice to have them both home for lunch, but they quickly left to go back to school.

I will tell you that having breast cancer or any type of cancer is an awful thing to go through.  Knowing that I have triple negative breast cancer I think is even harder because you know that it historically has higher recurrence rates and a nasty aggressive reputation to boot.  Going through chemo blindly, not knowing if it is working or not, and being told that there is a 50% chance that it will fail, is a hard thing to swallow.  Then you get to deal with the fact that there are no other known treatments if it does come back or metastasizes...just more chemo and radiation if possible.  I know at first my husband had a really hard time dealing with this.  I think he kind of gave up on me before I ever started the fight.  Now, things are different.  He is fighting with me tooth and nail.  He has given me strength and courage and has shown me a deeper level of love and understanding than I ever thought possible.  I know that there are a lot of people praying for not only me but him too.  I can feel it and I can see a change in him like no other.  He has always been a great husband, but now he is even more so.  He is amazing and strong, yet humble.  He has taken on so much for me and the girls.  He comes home and takes care of me, the dogs, the girls, the dishes, the laundry, and so much more.  I know this is a rare thing for most women to experience.  I also know that there are a lot of women who are blessed with great husbands.  When you take the sexual attraction and chemistry out of a relationship you get down to the bare bones of what your relationship is.  When a woman is beefed up on steroids, bald, boobless, and get to see the skeleton of your relationship.  What do I see in the x-ray of our lives?  I see that I married my best friend in the whole world.  He is not perfect, nor am I.  He has made have I.  We would not be human if it weren't so.  So I married my best friend and the greatest thing is ....that friendship continues to grow to even deeper levels.  Kevin, I love you more than you will ever know.  The girls and I are so blessed to have you.  You are the best husband and step-dad that anyone could ever ask for in a million years.  

Please leave your comments because I LOVE to read them.  I really look forward to it!!!!  Until next time my friends...

Monday, May 24, 2010

Toxic Sludge Phobia

Well, my body has been deep into the chemo slumber.  I don't remember much of anything since my chemo session.  Today is Saturday.  My chemo was on Thursday.  I woke up this afternoon to discover my husband had ripped out our kitchen sink and faucet with all the plumbing and there is a new one in its place.  Hmmm?  Don't remember that happening.  The new sink is much deeper and better for all the vegetable scouring that he has been doing.  So far, so good on the juicing.  I still don't know how I did not hear any of the mini-remodel going on in our kitchen.  

How do I feel after round four of chemo?  It is hard for me to even write about it.  It is more psycho-semantic than anything.  I think about it....I get nauseous.  I feel like all my membranes have been washed down with a toxic chemical similar to batter acid.  I can literally feel the coating of the toxins on the back sides of my eyeballs.  Enough of that....can't talk about it.

So it is Saturday night and my hubby is home with me.  Last night Joyce and Ted brought over some more of her yummy spaghetti and some chocolate cake which was pretty darn good:)    Then today Chuck and Ann brought over some kind of mushroom juice drink which is supposed to be really healthy.  Later Vicky came over to kill some time before a family get together.  I went to bed afterwards and went fast into a deep sleep.  Not long after Kevin got home from work, Lauren, a stylist, and her little girl came over to see us.  I was still asleep and don't remember any of it.  I woke to the sound of the juicer and my hubby making my next concoction. Lauren and Boo (that is what we call her little girl) had already come and gone.  I hate this chemo fog, but then again I am glad I can be somewhat unconscious through the bad parts.  I said many times that it would be nice if someone could put me in a coma and wake me up when it is over. Unfortunately, that is not going to happen.  

It is now Sunday afternoon.  I have once again woke up from hours of sleeping.  I am alone in the house.  It is just me and Ricky, my Yorkie.  Kevin took Charlie to the Dog park a while back and I have not seen them since.  I lay here fighting back tears.  Guess I am just feeling a little low.  I hate the tears I cry, because they feel I can feel the poisons from the chemo in them.  They have a hot burning sensation to them.   I fall back asleep.

It is now Monday night.  It has taken me three attempts to finish this blog post.  I can't focus.  I feel toxic.  I know you should "never say never", BUT if I ever have to take the Red Devil and Cytoxan again.....NEVER!  I can't do it.  God would really have to make it plain to me that he wanted  me to and it was really a big part of his plan....otherwise there isn't anything in this world that would get me to take another round of that toxic sludge.  I am sorry.  I feel badly that someone reading this that might be facing it is being terrified by my words.  Don't get me wrong, it is do-able.  I just have this mental thing with it now.  I am very claustrophobic and I like to have control when something is near me or on me.  This fourth round of chemo has triggered some kind of phobia with me similar to claustrophobia.  The chemicals are everywhere on me, inside of me, I can taste them, I cry tears filled with chemicals, my nasal passages burn with its residue, my eyes are glassy and foggy with its film.  There is no escaping it.  It is everywhere inside and out and I can't stand it.

Since my surgery, I have only been able to take showers, no baths.  Mainly because of my incision on my right side that came open.  It is 99% closed up now.  Last night I couldn't take it any more.  The toxicity that I was feeling demanded that I submerge in the hottest water I could stand.  The skin is the largest organ of the body, and its ability to excrete toxins out of the body is second to none.   So I did.  I took a hot bath in our huge jetted tub.  I think I will do it again tonight.  It seemed to help a little.  I wish I had a hot tub about now....or a steam sauna.  Well friends, this too shall pass.  Thanks for all your prayers.  Sorry it has taken me so long to post this update.   Until next time my friends...

Thursday, May 20, 2010

Standing On The Word

I went to bed last night as usual trying to get some rest before the chemo session this morning.  However, that did not happen.  Instead my brain decided to channel surf, jumping from one thought and picture to another one.  Just when I thought I could stay on one and focus.....the channel would change again.  I am sure many of you know this feeling and agree that it is maddening. I watched the sun come up through the drapes of my window so I finally gave up and got my computer.  I did some paperwork and before I knew it, it was shower time.  I started fighting tears back the night before.  I fought them all night long, and into the morning.  The anxiety had finally overtook my body.  I IDID NOT WANT TO GO to chemo.  I did not want the poison in my body anymore.  So I cried tears and tried to keep them wiped, but they just kept coming.  I cried as Kevin drove us over to the office.  I cried at the reception desk.  I cried sitting in the waiting room.  I cried getting my blood drawn.  I cried when the girl took my blood pressure, (which she had to do three times to get one that would not give an error.)  I think every person that serviced me must have told Dr Krekow, my oncologist, that I was crying.  She came in and asked me if I wanted to postpone my chemo for a week.  I said "no way"  I just want to get this done.  The truth is I have had "panic attacks" in doctors offices (and restaurants/movies) for 10 years now.  In fact, I went to my first movie in five years with the girls in early February. I did not cry or have a panic attack before, during, or after.  However, we were the only ones in the theater.  I have had panic attacks even when I was going to the doctor for a prescription refill or something small.  I start to cry, and I can't seem to stop it.  I have passed out in doctors offices four times and two more times I would have but someone intervened in the situation.  So this is not uncommon for me to have some panic attack going to the doctor, especially when I have been anticipating the worst chemo session thus far.  Kevin began to drill the oncologist with a million questions.  Somehow in the process of this it came out that I have a 50% chance of advancing to stage 4 in the next two years.  Apparently, to summarize, she sad the chemo only works for half of triple negative patients with high grade aggressive tumors like mine.  This I am sure, is a statistic that Satan really wanted to hit me with, but no worries.  It is only Satan that is challenging me.  I guess I got him all bent out of shape in my last post.....he got his wittle bitty feelings now he is going to try to hurt mine, try to scare me.  Oooooooeeew.....baaaahaahaahaaa..........Boo!  I am soooo scared (sounding as sarcastic as my keyboard will let me!) Such a childish thing.  But you have got to give him credit for trying I guess.  Funny thing is, by this time in my session with Dr Krekow, my tears dried up.  She also said I could take more anit-anxiety meds which I promptly did. 

You see, just like Heather, my stage four triple negative friend in Ohio, I too. have people at my side to lift me up when I feel weak or begin to waiver.  My good friend and client of many years, Ann Harn gave me my pep talk and armored me with the word.  Ann and her husband Chuck are also ordained ministers and performed our wedding ceremony and our premarital couseling.   She gave me a scripture to read and meditate on...It is Psalm 91.  I have the bible on my IPHONE so I am taking it from the most easiest translation for me to understand, the Contemporary English Version:


1  Live under the protection of God Most High, and stay in the shadow of God All-Powerful.

2 Then you will say to the Lord "You are my fortress, my place of safety;  you are my God, and I trust you."

3  The Lord will keep you safe from secret traps and deadly diseases.

4  He will spread his wings over you and keep you secure.  His faithfulness is like a shield or a city wall.

5  You won't need to worry about dangers at night or arrows during the day.

6 And you won't fear diseases that strike in the dark or sudden disaster at noon.

7  You will not be harmed, though thousands fall all around you.

8  And with your own eyes you will see the punishment of the wicked.

9  The Lord Most High is your fortress  Run to him for safety.

10 and no terrible disasters will strike you or your home.

11  God will command his angels to protect you wherever you go.

12  They will carry you in their arms, and you won't hurt your feet on the stones.

13  You will overpower the strongest lions and the most deadly snakes.

14.  The Lord says, "if you love me and truly know who I am, I will rescue you and keep you safe.

15  When you are in trouble, call out to me.  i will answer and be there to protect and honor you.

16  You will live a long life and see my saving power"

Psalms 91

Wow!  Reading those word gives me comfort.
Then Ann said to me " are battling against principalities, power, rulers of darkness of this world, spiritual wickedness in high places, and they have all been defeated!!!  You must stand on the faith with the the Blood of Jesus and the Sword of the Spirit which is the Word of God, the Bible!!!  Don't be moved by what you hear, feel, or see.  Overload yourself with the only true reality which is the Bible."

Thanks to all followers.  I love to get your comments as usual.  Until next time my friends...

Wednesday, May 19, 2010

The Spec On The Pig's Butt

  Thanks everyone for your comments and advice on nutrition and juicing.  I have had so many people tell me they are eating blueberries in my honor...LOL.  I knew I could make an impact on this world.  So tonight is a blessed chemo-eve and I am once again dreading the arrival of tomorrows infusions.  The good news is this will be the last time (I hope) that I will have to endure the effects of the Red Devil (adriamycin) and his friend (cytoxan).  You just don't know how glad I will be to get through this round of feeling like doo-doo.  I will still have four more chemo sessions to go, but they will be two different drugs with new side effects.  

I guess I should thank the Lord for the fact that as far as I know, the chemo is doing what it should.  The fact is, I don't know.  Because I had my double mastectomy first before starting chemo, there is no way to tell if the chemo is killing the cancer cells that may be floating out there.  In my previoius posts I have told you about my new friend Heather, who lives in Ohio and also has triple negative breast cancer.  Her chemo sessions have been stopped, as they are not working.  Her cancer has spread to more lymph nodes and the clavicle/chest area.  Unfortunately, there are no other treatments for triple negative breast cancer other than chemo for systemic treatments and radiation for the localized area.  There are trials going on with experimental PARP inhibitors.  Heather went to Columbus on Monday to see about being a part of that.  She said the doctor was stumbling over her words as if she thought there was nothing they really could do for her.  The requirements to even be a part of the trials are very strict and narrow.  Not many people even qualify.  During Heather's last chemo session the nurse giving her the Neulasta shot pretty much told her she needed to get her affairs is order.  So Heather is living on her faith that God can heal her and she is doing everything she can to improve her health.  Heather emailed me after her trip to Columbus.  I could tell she was disappointed and frustrated.  So I messaged her back with the following words....

Live each day to its fullest. NONE of us know when our last day will be. I am sorry it was so exhausting for you. Keep the faith and know you are healed. Just make up your mind and live your life. Put this cancer behind you. Just think of it as over. If there is something else you can do, then God will show you. In the meantime, you don't have to worry about it, because it is in God's hands not yours. Give it up to him and feel released from that burden. Tell God it is all his and if he wants you to take action in any way other than what you are doing now, to show you and make it clear. Pray for discernment to know when God is speaking. There are hundreds of prayers going up for you so don't worry. Now start living your life and enjoy every minute. Don't let this disease steal one more minute of another day with worry. God is way bigger. I truly believe that Satan is using these people, like the nurse who gave you your Neulasta shot, and maybe even the doctor... stumbling over her words. That is just Satan trying to give you the spirit of fear. Now you need to laugh at his ugly face and tell him your God is greater and by the blood of Jesus and by his stripes you are healed. Tell Satan he is messing with the wrong girl because in Christ you have no fear and "all things are possible with him who gives me strength". You tell that scum Satan that you will NOT be afraid and he is a little tiny wimpy stinky spec of dirt on a sweaty pigs butt. His "powers" are nothing compared to the works and the miracles God performs every day. And healing your cancer is nothing compared to so many of God's miracles. Satan, this is Penny, and if you are reading these words you are so stupid to think you have any way of stealing my sister Heather's hope, faith, or joy. You might as well go run and hide in Jesus' name because Heather is a strong woman of faith and when she feels weak, God has given her people like me to help pick her up again. He has given her an army of prayer warriors that are praying for her and cursing your name.....Now Heather, tell Satan to be gone in Jesus' name...and he can take his fear with him and shove it up his pitched forked tail! OK, now if the little booger decides to come you know how to talk to him. I love you!---(Penny)

Ok, this is probably why I never taught Sunday school.  However, we all must have faith and "keep chasing the rainbow in the rain".  My good friend Vicky text that quote to me this morning.  Many times during our lives, our faith will be tested.  Having your health decline at such a young age definitely tests your faith.  We must at all times believe that all things God allows for the greater good.  We have to lay things at his feet and let him be in control.  In the meantime, while we are exercising  our faith, we must be aware of Satan's attacks.  It is when we are relying on God the most, that Satan works his hardest.  He will try to steal our joy, our hope, our faith, our confidence, and every good thing that God has given us.  So you must be on guard.  Do God's will, and be ready and armed for Satan's attack.  Most of all, fear not.  Put Satan in perspective to our mighty awesome God.  He is so small, and he runs in fear at the mention of Jesus' name.  

So I will go to chemo tomorrow and I will thank God for getting me through this...and I will be thinking of Heather.  It seems I think of her everyday many times throughout the day.  Heather, when this is all over and when we are both better, we will have to meet somewhere between Texas and Ohio for a girls weekend.  We will celebrate life, our health, and God's healing.  

Please click on the "follow" tab and become a follower.  Share this blog with your friends and help me spread awareness of this dreadful disease.  Please leave your comments. Keep Heather and I in your prayers.  Until next time my friends...

Monday, May 17, 2010

Anyone Want Some Booberries?

Hello everyone.  Thanks for all the responses and prayers for Heather and I both.  Heather left for Columbus today to see about the PARP trials.  I told her that was great and she should give every avenue an opportunity.  She had sent me a text so my response to her was...

"Hit this cancer with everything you've got medically, naturally, spiritually.....Just bring out the big guns girl!  Tell that cancer 'I'm coming and Hell's coming with me!' " (this is  my favorite line from the movie Tombstone).

She said I made her laugh!  That made me smile:)

So I have been thinking of all that Heather is having to do right now, and I did not think it was fair that I be eating butterfingers, sour cream and onion chips, and cheese puffs (and I wonder why I have cancer?....although in my defense I never wanted these until chemo) Anyways, I have known it in my heart for quite sometime but I have been in my happy place....a world of denial....a world where I don't have to face the truth.  And the truth is I can't wait until I am stage 4 to change my nutrition.  The truth is there...staring me in the face.  Even though I wish it would go away and leave me the hec alone, it won't.  I can't be down here in Texas eating whatever sounds alluring to my tastebuds while Heather is up in Van Wert, Ohio drinking freshly made carrot and celery juice all day.  So Kevin and I bought a juicer on Sunday.  After our trip to Bed Bath and Beyond I was too wiped out to go by all the fresh fruits and veggies.  Kevin dropped me off at the house and went to Sprouts, a local food market, and stocked us up on every kind of fruit and vegetable he thought could be put in a juicer.  I mean everything...except for one thing. But I will tell you that a little later.  We juiced carrots, celery, pineapple, apples, strawberries, collard greens, oranges, lettuce, spinach, and I don't even know what else.  Believe it or not, it was really good.  I mean I have been craving orange juice for weeks now. I think I have drank 3 gallons of orange juice in the last 2 weeks myself.  You can only imagine what that will do to you.  Especially when you drink a whole gallon of orange juice while you're eating a whole bag of cheese puffs at the same time.  Trust me, EVERTHING is orange!..TMI?

So I have been juicing away and I actually like the taste so far....of course I have not been drinking just carrot and celery juice either.  Yesterday I walked on my treadmill for 30 minutes.  It was a slow pace but I upped the incline and took deeper, slower strides.  It is a start, and I at least had enough energy to get myself to "the room" where the treadmill rest in early retirement.

So after Kevin and I juiced everything we could juice, I got on my laptop and was scouring the net.  I came upon this study that was done by City of Hope, I believe it is a cancer treatment/research center.  They did a study and found that blueberries slowed the growth of cells in triple negative breast cancer tumors.  They found that in some cases there was cell death, and the overall weight of tumors in lab animals was 70% less with a group that was given blueberry extracts than the control group that wasn't.  So I thought this was exciting news and I wondered why this wasn't plastered all over every internet site dealing about TNBC.  The truth is ...their is not much money in blueberries for pharmaceutical companies. So unless your a new medicine with twenty or more side effects worth millions to big pharmaceutical companies you won't get a lot of fame.  So thank you City of Hope for your research in alternative cures both natural and pharmaceutical for triple negative patients.

So after reading this, I told Kevin to listen up and I read him the article and made him watch a video.  He thought it was very interesting then he got up and began putting on his shoes.  Before I knew it he was grabbing his keys.  I asked him where he was going.  His reply was simple and sweet..."I am going to get blueberries....I did not get any blueberries."  So out the door he went.  It was actually a very touching moment for me.  I thought to myself, "he really wants me to live!?"  I know that sounds funny, but how many married people out there wish they could do it all over again, right?

So now I am juicing away and eating a lot a blueberries and loving my sweet hubby even more.  As always I love to get your comments and thank you for becoming a follower!  Share this link with your friends and help me spread awareness about Triple Negative Breast Cancer.  Please click on the link below to watch this awesome video.  Until next time my friends!

Blueberries and Triple Negative Breast Cancer

Sunday, May 16, 2010

How God Spoke to me through Karaoke!

It is Sunday morning about 10:30.  Kevin left early to go fishing and I am still in bed.  I am recuperating after a successful birthday party with a lot of seventh graders.  Last night, they all seemed to have a good time.  They had a water balloon fight, listened to music, played capture the flag in the dark, and sang karaoke.  My husband got the three boys up who were reluctant at first and pretty soon there were bustin' some moves and beat boxing.  All the girls had fun as well.  Towards the end of the night, I went to my room for bit as most of the kid's parents were beginning to pick up or already had.  I came out a little bit later to the most amazing thing.  I have probably no less than 25 karaoke CD's to choose from with all kinds of music.  There were three girls in the living room and they had found my Christian praise and worship songs for karaoke. There is one disc and I had put it up on the book shelf.   They were all singing "How Great is Our God!"  If any other kids came in from outside playing....they just walked by them (if any came in they were coming in for water, food, or bathroom)....and I noticed they would start singing it too while they were walking by them.  There lips would start moving and they were singing it too!  Some of them would just stop and stand and start singing right where they were.  I had gone to my room to get on my computer and email another Triple Negative Friend I met online and feel very close to.  She had contacted me earlier that day and told me her chemo was not working.  They had found a tumor bigger than her original one in the breast clavicle area despite her double mastectomy, and her lymph nodes are now riddled with cancer.  She was a stage four because they had found two spots on her liver before her chemo started, but they were small.   They basically left her with not much hope.  She is my age and has two boys about the same ages as Landri and Presley.  So, Heather, is taking a huge leap of faith.  She has went to see a man by the name of Solomon Wickey, an Amish man.  A man that many say has a God given gift.  You can read about him on the internet. He also is giving her a strict diet to follow of herbs and fruits and vegetables, some whole grains etc. which includes juicing. In four months she should be cancer free if all goes well.  I am a firm believer in natural healing.  I told her to go for it!  Show God how big your faith is.....Heather.  She will discontinue her chemo which is not working to kill her cancer cells, it is only weakening and poisoning her body.  And since there are no other targeted therapies for Triple Negative Breast Cancer, there is not much left that doctors can do.  I believe fully that God designed our bodies to be perfect operating machines.  We have to give it the right fuel, the fuel that God intended.  I believe that a diet rich in fruits, vegetables and whole grains can be a powerful healing tool.  However, I am a believer and not a doer.  This is where I have to change.  I always said that if I was diagnosed with cancer, that I would not have chemo or radiation.  I just would not do it.  I would try to heal my body with fueling it with fruits and veggies, and faith.  I even said that to Kevin a month or so before I was diagnosed.  He got mad at me for saying it.  I just told him that if it was in God's plan for me to be healed then I would be healed, and if it wasn't than no amount of treatment would make a difference.  Sometimes I feel like a hypocrite even going through this chemo and radiation.  But I have decided that I will do my part and God will do the rest.  I realize that I could easily be in the same boat with Heather.  That could happen to me.  And if I find out that the chemo is not working for me, I will not continue to poison my body for no reason. I have heard of people who's disease still progresses to stage four, but chemo is controlling the spread somewhat.  These people live on chemo for years but eventually will die.  As much as I want to live, I will not live on chemo.  I don't think that I could do that.  I much more believe in the route that Heather has chosen.  If God wants me to live another ten years then he will let me.  I also know that you never know until you are there walking in those shoes what your real choices might be.

So I had been thinking of Heather all day yesterday.  She has been on my mind and my heart.  I have been thinking of her new plan of attack for her cancer.  I have prayed for her.  She was weighing heavy on my heart.  So I go in my room to check my messages on my computer to see if I have heard any more from her.  Still heavy on my mind, I leave my room and I walk out to children singing "How Great Is Our God!".  What are the chances that at a 13 year old birthday boy and girl party it would end with them singing "How Great Is Our God"?  God was speaking to me through these kid's song, and he was speaking to Heather, too.  Thank you God for reminding me how powerful and awesome and great you are Lord!  Thank you for giving us gifts of healing, discernment, and wisdom. Thank you for being way bigger than any diagnosis or any treatments or any doctors.

I need everyone reading this blog to start praying for Heather and her healing.  Talk to your Sunday school groups, bible study groups and any prayer warriors you have....prayer chains too!  You MUST prayer for her!  Please, please, please, do not discard this request.  She means a lot to me.  God has brought us together for a reason.  And I believe that I am supposed to watch her live and beat this, but I need all of you guys out there to start praying.  Every day and every night....whenever you think about it, while driving or doing anything...please pray for Heather.  Of course you can pray for me, too.   But prayer for Heather is urgent right now.

I would love for everyone reading this blog to click on the "follow" tab and sign up to be a follower.  It doesn't take long.   Also if you don't know me personally but somehow you found this blog or heard about it from someone, please leave me a comment by clicking on "# comments" at the bottom of the post in small print.  It will say 0 comments, 1 comments, 2 comments, etc.  I would love to know how you found my blog and where you are from.  I love to hear from my blog followers.  Until next time my friends.

Friday, May 14, 2010

Planning for Fun...with Cancer

Hello everyone!  I am continuing everyday to fight this battle with triple negative breast cancer.  I am noticing that with each chemo session.  I am feeling more and more wiped out.  I was told that it would happen....that the chemo would have somewhat of an accumulative effect.  Basically, it hits me harder each time.  The bad time last a little longer and comes on a little sooner.  Next week I face my fourth round of chemo with the adriamycin and cytoxan.  These are the "bad" drugs that really make you feel crappy.  The next four rounds will be two other drugs.  The nausea is not supposed to be as bad.  However, with these drugs comes neuropathy in the fingers and toes.  This can be a permanent thing.  I will hope and pray that it won't be.  For the sake of my occupation, it would be disabling to have pain and/or numbness in my finger tips (and toes) all the time.  

I am still concerned about the fact that I am still unable to work.  My days are so unpredictable when it comes to how I feel.  Being a hairstylist who has been self employed for 12 years, I do have a huge clientèle.  I realize that by the time this is over, it may not be that big.  I have seen it happen too many times.  My appointments are usually pre-booked for up to two months at a time.  I can't even say how I may feel tomorrow, much less next week, and certainly not next month.  It is getting pretty scary though, not having my income.  I know I should not worry because God always seems to come through no matter what the situation is. Even though things are tight, we have decided to take a family vacation since this may be Landri's last summer for vacations with us.  We are driving to the Texas coast and staying at Pelican Bay for a few days of fishing and such.  We did not want to plan anything too big because we know that I may be held back in the bed for a lot of the time.  I am sure Kevin and the girls can drum up some fun with or without me, especially when it comes to fishing. 

Yesterday was Presley's birthday.  She is 13 years old now.   Kevin is off every Thursday so we went to the mall to get Presley a gift.  We ended up getting a complimentary wheelchair and Kevin pushed me around.  I was very glad because I would not have lasted long. I had a blood draw earlier that morning and they had said my white blood count was too low (again).  I have to go on more antibiotics for this.  I was also pretty dizzy with vertigo as usual.  So we went from one end of the mall to the other looking for tie-dyed Converse shoes.  This is what Presley wanted, but I had not been able to find them before....but I had not looked real hard, either.  Since I had Kevin and he could push me around....we got serious about finding these shoes.  No luck though!  Not even online!  So we got her some Rocket-Dogs with splattered paint colors on them and some Skechers that looked somewhat like Ed Hardy's.  We picked up some Zebra flip-flops too.  What can I say....the girl is a shoe horse!  We also bought her a pink rod and reel for fishing.  This one has flashing lights on the reel that go off as you turn the crank.  It is so girly girl!  After we got home we all went out to eat for Presley's birthday and her dad went with us.  Tomorrow, Saturday, I have to pull off a party with a lot of 7th graders who will be coming to the house.  I hope she has a great time!

I am looking forward to getting out of town.  I figure I will at least be able get someone to prop me up in a chair and hold a fishing pole, right?  At least at some point....I will feel like I am part of the fun.  My girls deserve to have a little fun...I know things have not been the cheeriest around here lately. God knows Kevin could sure use a break.  He comes home after work everyday and takes care of me, the girls, the dogs, the house, the laundry, and everything else you could imagine.  He has really been a trooper.  I couldn't ask for anymore from him.  I have the best husband and kids!  I love them so much.  

Guess I better start getting ready for the party.  Got to round up some energy.  Happy Birthday my little Presley! Until next time friends!

Wednesday, May 12, 2010

Warning! Graphic Images In This Post!!!!

Actually, I really wish that I looked as good as this brave woman on this cover.  Just picture much fatter and bald......sorry....not pretty.

So last night was the longest night ever.  I was still trying to fall asleep at 5:30 this morning.  I have been sleeping on this wedge since my surgery two months ago.  I am normally a side sleeper, but that seems to almost be impossible these days.  When you have a mastectomy with delayed reconstruction, it is somewhat like having a bulldozer plow through your chest.  Because the breast (cancer) surgeon is not a plastic surgeon, they seem to not care what the outcome of your surgery looks or feels like to you.  I may be somewhat graphic here, so if you can't handle it....stop reading now.

Basically, I am cut in what seems like from one side almost to my back under the arm/flank area to the middle of my chest under where the breast used to be....the cut skips an inch or so then picks up again and continues far to the other side.  So far, that it almost goes into my back.  On the sides of my body, I have this extra tissue and skin.  It is more pronounced on the left side and sticks out pretty far.  For those of you who is like having darts put in your pants.   Except my darts are on my sides.  It has little feeling so it kind of feels like I have a steak hanging there.  I can feel it, but "it" can't feel me.  I remember the first walk down the hospital hall that Kevin and I took after my surgery...he asked me why I was walking with my arms so far away from my body.  I replied "I don't know they have something shoved up underneath my arms under these bandages."  Boy was I in shock when later that night we went to the bathroom and removed the bandages so I could shower.  I soon realized that there was nothing there but was extra "me" that was sticking out and sewn together like a dart.  I was horrified.  On the left side there was enough to make an extra boob.  I did not understand why the surgeon just plowed through and left everything in such disarray.  Then as I looked at my scars which also went vertical towards where the nipple was ....I could have sworn that there was still part or all of a nipple on the left side.  It was sewn together, but it sure looked like one.  Nothing was left on the right side that even closely resembled a nipple.  So these areas on my sides have little or no feeling, but my arms can feel them.  The left side really gets in the way and I can no longer sleep on my left side like I used to.  Towards the end of every day, I begin to ache and hurt in those areas....especially the left side.  It seems that the whole left side swells, and the incisions become bright red and it is hot feeling. It is very painful at this point and it seems to make my whole body ache.

Last night I went to the salon to do a client for the first time since my surgery.  This appointment was pre-booked during the week before my surgery.  Courtney, who drives from Dallas, has always been a really good client.  She has spent the last year taking care of her 72? year old mother who also has had breast cancer.  She was able to fill me in on some of what was ahead for me that last week before my surgery.  I really wanted to try to do this client.  I needed to see if I could physically and what it would be like.  And I wanted to see Courtney.  Well, I will tell you that when I got home, I cried.  I cried many times throughout the night just wishing I had my life back.  Going to work made me realize that I wasn't going to be "normal" for a while.  I highlighted Courtney's hair.  My back was having spasms, my neck hurt, my incisions were swelling, and the extra "me" on my left side was excruciating and annoying.  I felt like someone had wrapped a picture frame wire around me and was twisting it tight, really tight.  I hurt so bad when I finally got home.  It was so upsetting that I felt that way and I had only done ONE client.  Then I think to myself  " ...I have one surgery to put in expanders after chemo is over.  Then, I will have another surgery to actually do the reconstruction.  Then later, there will be another surgery to reconstruct the nipples."...which I think I should get a discount on because I think that one nipple got left behind!  When will I be able to work again? When will my body not hurt from having a surgery?

During my conversation with Courtney last night, we talked about the fact that in her mother's case, it also seemed as if the surgeon just "bulldozed" through.  I mean so I get it....they are not a plastic surgeon.....but is not like they are chopping steaks for the butcher either.  I just think that there should be a little more care and consideration taken.  It seems like the cancer surgeons view their job as "to get in, get it out's ok if it looks like ground zero...the plastic surgery will take care of the rest. "  Hello?  Nine or ten MONTHS from now!!!  In the mean time, I am still sleeping on a wedge.....feeling like I am hanging meat out to cure.  For many older women, reconstruction is not a path that is chosen.  They just don't want to go through so many more surgeries.  So they are left with the outcome of the mastectomy.  I can't blame them at all for not wanting to go through more surgeries.  I really don't want to either.

I will have to say that I am very grateful to my surgeon.  I know that the main goal is to get the cancer out of my body.  I have my complaints, but I am still very grateful.  I am at the stage in this where I am tired and annoyed.  I look at my chest and see that I am basically healed from the surgery.  I look, and I see that it is not a pretty sight.  "Healing" in this case did not bring any normalcy to my body.  It has reshaped and re-landscaped me into something that is not attractive.  Having a flat "bulldozed" chest accentuates the tummy that seems to be getting bigger and bigger.  I think most people I pass are probably thinking "...that poor pregnant lady has cancer!"  I seem to stay swollen everywhere.  Then I look up and there is the bald white scalp that tops everything off. 

 Today I went into Dillards to find something to wear that might minimized all these huge flaws.  It wasn't long before I was walking through the women's department crying.  I just went from rack to rack wiping my tears trying to dodge the sales girl that would probably come and try to offer her help. Boy would she be opening a can of worms!  

If you have never seen mastectomy pictures, I encourage you to google some on the internet.  They are not pretty.  Most people do not realize the harshness of this disease.  I think if more people knew the reality they would be shocked.  So many women have breast cancer and to all of society they never appear any different.  So in a way,  it is often blown off as "no big deal".   Many people are totally unaware that there is often not enough skin left to reconstruct or stretch.  A dear friend of mine is in the process of reconstruction and had to have cadaver skin used to cover the implants which will come later.  

The purpose of this post was not to gross you out or gain your pity, but to enlighten you as to the harsh reality that breast cancer brings.  It is an ugly disease that affects beautiful women everywhere.  It affects them not only physically, but emotionally and mentally.  There is hope, and there are great plastic surgeons out there who are doing amazing things.  I am hoping to find one of those.  My body right now feels like a disaster zone.  My skin has aged years in the last month.  I have 5 chemo treatments left and 30 radiation treatments and 2-3 surgeries.  However, I am alive and I am grateful.  I have a wonderful family and so much support from my friends and co-workers.  I am so blessed and I know that, but last night and today shook me into a reality that I was trying to suffocate.   However, this too shall pass. :)   I appreciate your comments and feedback.  Until next time my friends!

Monday, May 10, 2010

The Sweetest Thing From Abilene

It is almost midnight, Monday evening.  This morning I felt like I finally awoke from a three day post-chemo blur.   I woke up this morning and felt pretty normal.  The nausea that chemo left me was at a minimum.  I decided to get up, get out and drive.  I went to the salon to see how the expansion was going.  Tomorrow is the official day that the new side will be open, pending the final inspection.  Ken has worked night and day, day and night.  There is still a lot to be done, but he has made some huge strides.  It looks like it will all come together nicely.  I thought I would help out by going to pick up the mirrors for the stations.  I went and picked them up at a local Kirkland's store.  I had seen them there before and had talked to one of the sales girls about making sure that we could get ten of them all the same. It is always funny to see the reaction I get when telling someone that "it's for a hair salon".  People tend to check out your hair when they find out you own or work at a salon.  So I get a kick out of them looking at my bald head peeking out from under my hat.  So after dropping the mirrors off at the salon, I went back home to rest.  That pretty much took half the day and most of my energy.  I wanted to go back up and help Ken in the evening, so I knew I needed to get home and just lay down.  So I did.  I got under my covers and just laid back.  However, it wasn't long before my phone rang.

Landri, my seventeen year old called and asked if her friend Taylor could come over after school.  I said of course, and it wasn't long until they arrived.  Taylor is a new friend that Landri has made through playing softball this year.  She is a beauty just as all the girls are on her team.  I am not at all exaggerating.  They all look like super models!  Anyways, I heard them come in the back door. Landri came in my bedroom and said "Mom, something happened to me today... and you are really going to love it! ...Can we come in?"  I was laying on the bed feeling kind of woozy.  I told them both to come in and Landri began to tell me her story.  There was a certain gleam in her eye.  I could tell it was something special.

"So mom... when we went to Abilene during one of our last games, we stopped at this place.  I saw this thing that I wanted to get you, but I didn't have enough money.  So today at school, the whole the team got in a circle and they put me in the middle.  They gave me, as a surprise.  They all chipped in and bought it for me ....for you!  They had it sent from Abilene!"

 Taylor was at the foot of my bed and Landri stood beside me.  Landri's crystal blue eyes were full of tears, but she was smiling. She showed me her gift, the treasure she was so very proud to give me.  It was a painting on a small canvas.  At the bottom was the word "strength".  Above the writing was a hand-painted pink breast cancer awareness ribbon.  It was somewhat three dimensional as it stood out from the canvas a bit.  It looked sweet, like pink icing.  On the back of the painting, written on the wooden frame, were the words "Rebel Softball 5/10/10".  I couldn't do anything but cry.  I hugged Landri and then I hugged Taylor.  I held them both and cried while trying to utter my thanks.  I can barely even type these words now  or see my computer screen because I am still crying like a baby.  I am so thankful that Landri has such love and support from her friends.  I am telling you, these girls are special.  I have said it before in a previous post.  These girls, young women I should say, are the strength of our future.  I am so amazed by them.  Landri has received so much love and support from all the girls she plays sports with...not just her softball team. It is such a beautiful thing to see so much love shown from so many people, young people.  So there you have it.  It was the sweetest thing, from Abilene...given by the sweetest girls in the whole world.   Until next time....( I still can't stop crying :)

Saturday, May 8, 2010

Seeing Mom Through The Chemo Fog

       Two peanuts were walking down the was a salted! (hehehe)  
Well, tonight I am awakening from a thick chemo fog.  I barely have the energy to type on my keyboard.  My dad drove me Friday to get my Neulasta shot and we went out to eat afterwards.  That was the second time that I have ordered just a bowl of guacamole as dinner.  Why?  Because the linings of my mouth and throat are so raw that I have to be careful what I eat.  I have no taste buds left.  I realized that during my last chemo session I guess the nurse got so focused on trying to get a blood return, we both forgot to get ice for me to chew.  You see, you are supposed to chew on ice when the Red Devil is being administered.  It is getting very hard for me to even type the letters or think about the red stuff.  The ice in your mouth closes off the tiny blood vessels and hopefully keeps your taste buds from being destroyed as well as the linings of you throat and mouth.  Whoops!  Forgot about that this time!  And I can sure tell the difference.  Water tastes bad to me.  Everything seems to have the flavor of dry newspaper.  Yummy.   This could be a good thing.  Maybe I will lose a few pounds and counteract what all the steroids are doing to me.

I have been very weak and extremely nauseated.  My wonderful husband went to pick up some refills on my prescriptions.  He first made me my standard chicken noodle soup with crackers.  This is usually the only thing that sounds good when the nausea hits.  This time it had little taste at all.  I am so thirsty but anything I drink feels like it might come back up, and it really has no taste.  For some reason I am craving orange juice, so Kevin is bringing some back.  

So after my dad brought me home from getting the shot, I slept.  I slept until my sisters got to my house to get me.  They loaded me up and I slept in the car.  I got to Cindy's  house and I slept.  I slept in the car the next morning to pick my mother up from the nursing home.  We took her to eat brunch.....I slept on the way there.  I left the table early and went to lay down in the car....I slept some more.  I slept all the way home.  I went inside and went to bed. I have recently just woke up.  I have been feeding myself anti-nausea drugs and praying that this horrible taste in my mouth will go away.

Seeing my mother was good.  She has become very comical since she has been diagnosed with Alzheimer's.   She says the funniest things.  She loved my hat.  I took it off and she rubbed my bald head.  She exclaimed "Oh Penny, you are growing out your hair.....I like it!"  I looked over and saw tears in Cindy's eyes.  Tears that were flowing as if to say "she doesn't know the seriousness of the situation"....and there is no reason for her to know.  Then at brunch she told all of us three girls how beautiful we were and marveled over the color of our eyes.  She asked "now what kids do you have?"...speaking to any of us I think.   I knew years ago that my mother was not mentally well when she bought all three of us girls snow shovels for Christmas presents.  She waited until all the presents had been opened and brought them out with big read bows on them.  I remember thinking...."this is Texas...where in the heck did she find three snow shovels?"  If you only could have seen how proud she was of these snow shovels.  She always meant well, but life with her was never easy.  She is a totally different person now, and as much as I hate the Alzheimer' has made her a much more pleasant person to be around.  She is also much happier than she has ever been in her lifetime.  

Well I just downed a glass of orange juice.  I could taste it.  Not as strong as it usually would taste but I could still taste it.   I hate this toxic feeling and I hope it goes away soon.  I am reminded of the two pregnancies my sister, Cindy had.  She threw up everyday for nine months, two and three times a day.    She passed out in the grocery store twice standing in line.  I think she lost about 20-30 pounds being pregnant.  I am sure  this feeling I have pales in comparison to how she felt, but it still stinks!  

It was great to get together with my sisters and my mother.  I don't remember the last time that happened.  Karen, or "Susie" as I call her is my oldest sister, and is ten years older than me.  She got married the day before she turned 17 and is still married to the same wonderful man.  She later put herself through SMU and graduated.  My other sister, Cindy, is a teacher and met her husband while attending East Texas Baptist University.  She then went on to get her master's degree.  I graduated like I said from TCU in December of 1990 and then went on to cosmetology school.  All of us three girls put ourselves through school with little or no help. My mother dropped out of high school and my father barely finished the eighth grade.  For some reason, there was this strong sense of obligation that we all put on ourselves to get a college education.  So we did.

Well, I think the orange juice gave me a little pick-me-up.  I think I will have another glass!  But before I go I wanted to wish all mothers reading this a happy Mother's Day!    Thanks for helping me spread the word about Triple Negative Breast Cancer.  Thanks to all of you who are spreading the word and sharing this link through email or facebook.  I really appreciate it.   

Most of all, I want to tell all my followers out there who have been diagnosed with Triple Negative Breast Cancer that we can make a difference.  There is power in numbers.  Do you remember the time when you saw the first pink ribbon logo and you did not know what it meant or stood for?  Now do you know anyone who doesn't know what it stands for?  Triple Negative BC can be the same way....we can get its name out there.  So post this link and ask your friends to repost, and ask them to ask their friends to repost.....exposure and awareness make a huge difference in the direction of research and the obligations scientists and pharmaceutical companies have to the public.  So stay strong and stick together!

Until next time my friends....

Thursday, May 6, 2010

Battling the Blood Clot in Round 3 Chemo

What did the ghost say to the bee? ...."B00-BEE!"......Well I was dreading its arrival, but it finally did arrive...Today, the day I got my third chemo treatment.  Kevin and I got ready this morning.  We packed the "chemo" bag with my pink blanket, my phone, a drink, and anything else we thought we would need.   We left the house and drove to Texas Oncology.  I checked in, paid them their money and waited.  I was soon called back to a holding area where I would wait for the lab to call me.  There was an older man there and a woman who sat across from him.  The woman asked if he was here with his wife.  He explained that his wife was in heaven and they had spent several years at this place battling her breast cancer.  He said that they won the battle but that she fell into a deep depression and only lasted two years after that.  He never spoke of what illness he had that brought him there today.  The woman was probably in her late 70's and was waiting while her husband got his blood work done.  Kevin was sitting next to me as we listened to this conversation.  I could see his wheels turning.  I could tell he was thinking "will we be here several years?.....we will win this battle?"  And then he looked at me as if to say "Is there anyone our age in this place?"  We are always so young compared to all the others we see.  Soon it was my turn for the blood draw.  I sat in the chair, locked myself in and gave the lady my right arm.  It is always the right arm from now on because of the lymph nodes they took out of the left.  All blood pressure readings and needle sticks have to be done on the right arm.  I told Kevin to take some pictures.  When they asked what he was doing...I told them he was doing my documentary.  (snicker, snicker, made me feel important)  

So all the blood work was good.  It was now time to meet with Lisa.  Lisa is a physician's assistant and basically reviews your weeks since your last chemo.  She asked how you did and if there were any changes.  She can prescribe meds for you too.  Let me tell you, when you have cancer, they are not stingy with the meds.  My surgeon's office would not refill my hydrocodone.  Instead they said they needed to switch me to Darvocet, both for pain.  Well, the Darvocet has not done didily squat.  I might take one pain pill a day usually in the evening.  I just seem to hurt around my incision, which has not completely healed.  I also have a general aches and pains all over and the chemo headache.  I have suffered from migraines since I was about 22, but I have never received any kind of medication for them.  So, Lisa said she had no problems prescribing the Hydrocodone, and I was glad.  Lisa works directly for my oncologist.  She tells you to take the anti-nausea medication liberally, before you think you need it. They assure you that they won't "cut you off" and you will have plenty of refills.  They want you to be as comfortable as you can be when you are fighting this battle of cancer.  Finally, doctors that make sense.

After getting the OK, we were off to the infusion/chemo room.  Ellie, my mother-n-law was waiting on us in the hallway.  I was very glad to see her.  This was the first time she got to see me completely bald.  I was wearing a sparkling newsboy style hat and she thought it was cute.  So we all got to the room and I pick a chair and got situated.  A new nurse whom I have not met introduces herself.  She gets everything ready to put into my port.  This time there was no blood return when the needle/hook went into the port.  The saline drip and the anti-nausea meds were dripping just fine so she said that we would continue.  However, when the Adriamycin goes in, they MUST have a blood return.  Why?  Because if some of it were to get trapped under or between a vein and some tissue, it would eat right through the tissue, even bone.  Yep!  This is what they told me.  I guess that is another reason that they sit beside you and actually push it through the line into the port.  I think it has to stay moving.  That is my guess.  I guess if they just put it in a drip line and walked off and something went wrong it might just burn a whole through your chest or something.  Another reason I get nauseated at the thought of getting chemo.  So they gave me a bag of some meds that they often give heart attack patients to see if they could loosen a blood clot that may be at the opening of the port's line that goes into the main vessel heading into the heart.  After that they gave me Cytoxan.  They gave it to me first this time because they still were not getting a blood return in the line.  After that was over they gave me another bag of the heart attack med...all the while assuring me that it was a mild dose ( I could not help but think....yeah but this is my second dose!)   They tried for a blood return again and no such luck.  They gave me  some saline hoping to flush away the blockage.  The nurse then said that she would give me another bag of the heart attack meds.  This would be the third dose of the heart attack medicine. This was very disturbing to me.  It is bad enough that you feel you are being poisoned, but now this strong drug and THREE rounds of it.  It was too much.  I began to cry.  Kevin came over to console me.  I looked at Ellie and she was crying too!  After the saline drip was finished, she tried one last time for a blood return in the line.  Hallelujah!  It worked. It was time for the Red Devil.  So the nurse sat beside me pushed it into the line slowly.  It was over quickly and I was glad!

While I was getting treatment Ellie, began to talk to a woman on my right side.  She was the resident "pro" at getting chemo.  She informed us that she had been coming up there for ten years.  I believe she said she comes every week.  She has been living with stage four breast cancer all these years.  I noticed she was wearing a wig.  I guess she always will be as long as she is getting chemo.  Ellie asked her if she believed in God. She replied that she did not.  She seemed to be bitter.  I think that I will include her in my prayers tonight even though I don't know her name.  God knows her name and he knows her very well inside and out and he loves her just as much as he love me.

Thanks for all the comments on my last post.  I think I get more out of the comments left for me than anyone could ever get out of my posts.  I LOVE reading them!!!! Help spread awareness about triple negative by sharing this link with your friends.  You may also share with your FACEBOOK friends.  God bless you all!  Until next time....

Oh I have included a video from KFC and posted also to my previous blog posting titled "Anointed with oil and blessed with KFC" which posted in April.  Here it is if you wish to see it. 
 Just click below.