Pink Ribbons - The Chemo Test

Pink Ribbons is a feature series I have started that is posted every Wed.  I am a Pink Ribbon Warrior, having gone through the chemo, surgery, radiation, the year of waiting and recently stage 2 reconstruction...which I find is really the first of many little surgeries.  I am at a place in my life where I am willing to open my journal from that time and share with you my anger, fears, challenges and pain of finding out you have cancer.  At the end of the post, you will find the links of the previous posts from the most recent first and going back.  These are not current events.  This is me sharing with you from the other side of breast cancer. 

Marcia picked me up and went with me to my "chemo class".

 And THERE WAS NOT A TEST.  

The nurse was joking but I thought she was serious!  I have spent the last 3 days studying my chemo drugs and the side effects and when to call the doctor and.....THERE WAS NO TEST!  It is an outrage!  

I kept waiting for the test and finally I asked.  They laughed.  Then later they realized I was serious and had believed the nurse about the test.  I told them they should be ashamed.  If you can't believe your chemo nurses, then when are you SUPPOSED to believe them?  

They hung their heads and said they were sorry for misleading me.  But they were snickering.  I don't think they were very sorry.!

I had asked Marcia to go with me because I knew sometimes when you are facing big medical issues you don't always catch everything that is said.  I wanted an extra pair of ears.  KJ couldn't come...well he COULD have but I told him, not to because I wanted him with me for the port surgery.

I will be taking a chemo cocktail called CT...It’s Cytoxin and Taxotere.  We talked about their common side effects and the kind of drugs the doctors will give me.  The chemo nurse said that chemo feels a lot like early pregnancy....really, really tired and really, really nauseous.  Goody.

She talked about different programs for people undergoing cancer treatment...Several programs offered by the American Cancer Society.  It's interesting and disheartening that Susan G Komen offers nothing to people with cancer.  I guess they just talk about self exams, collect lots of money and sell pink ribbons.  

I asked if there was any classes the nurse just shook her head.  She made appointments for me with the American Cancer Society for the Look Good, Feel Better program.  They will also evaluate my “needs” and see how they can address them.  ACS is really cool, and so I’m glad Mr. Rosey has had a deduction from his pay sent to them through the United Way Combined Federal Campaign.  He started that after daddy died of colon cancer.

Marcia and I were going to go out for lunch but there was some crisis in the parsonage, so she had to get back home.

In a moment of complete and utter bravery on my part, I walked across the street and knocked on the landlady's door.  When she answered I explained that I just learned I had breast cancer.  I asked her to extend some grace with our lawn mowing because normally I do it.  Now with KJ's condition and my chemo, it might get a little long.  Well! She would not hear about it.  She told me they would take over the lawn care and that I should just concentrate on coping with the chemo.  I'm grateful beyond words.

Fighting Cancer is Easier with the Support of Friends, the American Cancer Society, 

Skilled doctors and nurses!

Pink Ribbons...But the World Still Goes On

Pink Ribbons is a feature series I have started that is posted every Wed.  I am a Pink Ribbon Warrior, having gone through the chemo, surgery, radiation, the year of waiting and recently stage 2 reconstruction...which I find is really the first of many little surgeries.  I am at a place in my life where I am willing to open my journal from that time and share with you my anger, fears, challenges and pain of finding out you have cancer.  At the end of the post, you will find the links of the previous posts from the most recent first and going back.  These are not current events.  This is me sharing with you from the other side of breast cancer. 

Hi Guys, I got a bunch of cards in the mail today. That was cool.  I got a funny card from my sister.  It made me laugh and that felt good.

We also got news in the mail that has made me sick to my stomach.  You know my husband gets an infusion every month to counter act the effects of the neurological disease he has.  The insurance company sent a notice that they will no longer cover his treatments as they aren't helping!  

Uh yeah ...it does help. * sarcastic*  

It's not a cure, it's a treatment. It allows him to keep working. So on top of my own struggles I have to call his neurologist tomorrow to find out what is going on. I need to find out how we can appeal this. He won't be able to work without use of his right arm. However he HAS to continue working until this cancer treatment is finished. I can hardly breathe this makes me so sick.

I've had to sit back and realize that my life seemed to stop with the diagnosis - CANCER.  But the rest of the world is still going on, still making stupid decisions and still impacting my life.  It's really hard to focus on dealing with normal, daily stuff, PLUS cancer and PLUS the critical issues that come up.  AUGH!  Make it go away!

It almost feels like a death.  I get the diagnosis and everything stopped for my husband and myself.  We narrowed our focus to concentrate on getting the answers about my cancer and starting treatments.  Every so often we get interrupted...someone's having a baby.  Someone's got a new job.  Someone bought a house.  It's like everyone else is going on with their lives but mine is stuck here in Cancertown.  

 Sally:  is the insurance company his DOCTOR?????????   How do they know it's not helping????????????????  praying for you  

Carla:  Rosey, I'm behind on my reading but wanted to tell you that I love you and am praying for you.

Shelley: I can't believe this insurance company can do that, and I hate that it causes extra stress for you guys who have to take care of it! I will pray that the neurologist’s office can take care of it quickly and painlessly. I'm sorry you have to deal with this on top of everything else. I noticed in another post you talked about being tired from the emotional toll of it all, I am paraphrasing, can't remember exactly, but anyway, I can certainly see how that would be true. I will be praying for God to give you extra strength and for these things to be taken care of and stop stressing you out. Prayers for your hubbie too, lots of them! For his body, for his treatments to continue, for his work, for his emotions, for his stress, everything, and for the Spirit to intercede and pray for all the things I can't even think of to pray.  Love you guys!

Rosey:  Thanks guys. Your fiery red mad faces gave me a laugh. Cell phones don't give you emoticon choices. So I forget you have them. It's a surprise when I see one.

The family issue over releasing my medical issue will die down.  I'm not sure they understand, but I believe they will respect my wishes.  It's private to me and I think the general public only wants to hear about cancer in general terms.  I'M still trying to come to terms with it myself.  I didn't need to open up facebook and find the details on my wall...when I wasn't ready to put them there myself.  

You guys are being so good to me. Letting me say whatever I need to say. You aren't running from it or giving me platitudes. Many of you are praying for me but you aren't just praying and running. You offer input and encouragement. I'm getting so much more support than I expected from all of you who are hundreds of miles away. Jason and Marcia have been taking me to my numerous appointments. But there's a lot of silence from other friends. They say let me know if there's something I can do. Which usually means "oh please dear god, don't bother me." I've learned already the ones who really want to help will ask...what can I do to help you?   That's a question I can answer.

Still waiting for return calls from the neurologist, it usually takes them a while.

Having Cancer is hard when you still have

 to deal with the rest of the world

Tis the Season for "Fall" Nuts

I do not know if some of you have caught this bit of information.

I am married to certifiable nut.

Over the years he has been known to pester me so I won't miss my sisters.

He pestered our son, so he wouldn't miss out on the "sibling" experience.  That was an intense lesson - having TWO boys being brats.

Sometimes I want to WRING his neck.

But oh, our marriage has been full of as much laughter as we can squeeze in.  We have a similar snarky humor and our one liners to each other can lay us O. U. T.  Rolling on the ground, holding your sides, peeing your pants (although he insists that men never do that), laughing until tears roll down your face.  We've had our share of trial and conflict, but love and laughter have been our constant companion.

This is World Series time and the rest of the world must grind to a halt and take the back seat.  I too am a fan but I won't say that I "breathe" baseball.  He. does.  Again this year, we determined in early August the team didn't have it in them this year, yet here we find ourselves in a play off yet again.  He's holding his breath, waiting for a consecutive year in the Series.

I got a lot of stink eye and indignation when I dared to watch some video online that did not pertain to baseball.  I found some headphones and he got over it.

I did not know I was marrying a sports freak at that ceremony in the front of the church.  My acceptance of sports were not part of the vows, and I'm not sure he even revealed to me the depth of his love for baseball.  We were married in July, so in just a few short months - the 1979 Series was upon us.  That's when I discovered that everything stops so he can watch the games.  It didn't even matter who is playing.  He parked in front of the TV set cheering on one side or the other.  If our STL Cardinals are playing then well of course, that is who we will follow.  And of course the rest of the world must grind to a halt until the series is over.  That's just the way it IS.

That year the the baseball season ended and I thought so had the fanaticism.  

I was wrong.  

Now it was NFL Football, then College Basketball and on to Pro Basketball (although he admits that pro basketball is his least favorite).

I realized the cold truth.  I had married a sports nut.  To him there are two seasons...baseball and football.  Summer starts on Pitchers and Catchers Day and ends with the final score of the World Series.  The temps outside are immaterial...it's what's on TV that determines our seasons.

I realized I had a choice.  I was either going to be a baseball, football & basketball widow. I whine about how he pays Sooooo much attention to sports or... I could learn to enjoy the sports and sit by his side yelling just as loud and obnoxiously as him.  I chose to enjoy sports with him.  

I have even been known to...support an opposing team just to rile him, which makes for more interesting contests.  Never against the STL Cardinals though.

So again I sit enjoying America's past time and the company of my husband.  While he is quite the fan, he is NOT one to sit bare chested with his body painted red, tattooed with the STL Cardinal emblem (mercy I hope that doesn't give him any ideas).  I don't have a Cardinal room, although he has filled a shelf with plenty of Cardinal clutter.  He's entitled as I have my own share of clutter.

But don't expect him to clearly focus until the games are over.  You will have a brief window before the Football fever sets in.  It's more intense because I am an Arizona Cardinal fan living with a STL Rams fan.  But we have fun.

Oh and recall at the beginning of this I stated I was married to a certifiable nut?  This week he texted most of the people in his contacts list.  He stated he had lost their cell phone number and to text it back to him.  Yes.  He's that man.  

Seriously though 90% of the people were helpful enough to text back the cellphone number from the cellphone that he texted the request.

He almost got me.  At the last minute I stopped and said...waaaait a minute.  

Pink Ribbons - Drama...

Pink Ribbons is a feature series I have started that is posted every Wed.  I am a Pink Ribbon Warrior, having gone through the chemo, surgery, radiation, the year of waiting and recently stage 2 reconstruction...which I find is really the first of many little surgeries.  I am at a place in my life where I am willing to open my journal from that time and share with you my anger, fears, challenges and pain of finding out you have cancer.  At the end of the post, you will find the links of the previous posts from the most recent first and going back.  These are not current events.  This is me sharing with you from the other side of breast cancer. 

August 2010

This is a difficult time.  My mom and sister are coming up Thurs. I hoped to schedule the port surgery then. But it's not that day, they will help me box up all this stuff of mom's that I agreed to sell in a garage sale. That's not happening.  I asked my sister to limit who she invited.  I feel that some of my family has been telling me how I had to "do" cancer. Praising God for it and singing...and ignoring my real feelings. I don't believe like that.  I think God understands this is scary stuff and I'm struggling.  He understood his SON in the Garden of Gethsemane.  He allowed Christ to ask if he really had to do this. So why do other Christians seem to portray that in the face of scary stuff, we have to pull the stiff upper lip and praise God.  That if we can't, then we are failing as Christians.

I know everyone is just coping the way they need to deal with it. I have three sisters remember?  One sister's doctor told her he wanted to put her on tamoxifen to prevent ca. and she is refusing. She said God will protect her. Which made me feel like  ?What the heck?? what am I??..ground liver? Because He DIDN’T protect me from cancer, I’m not as spiritual as she is?  She doesn't mean it like that.  But you know what?  When you are told you have a life threatening condition, your emotions are wired.  You are sensitive and you struggle to cope.  And things that people don't think SHOULD upset us, well it does.  I have dozens of people telling me I need to write and journal on this and frankly I don't want to.  Right now, I don't want to spend any time writing about cancer!

Even as I peck this out I get a text message from one sister that they want to come Thurs. augh. So the whole crew is coming.  I'm trying to be gracious, but this is so overwhelming that I'm having to be a little selfish.  I don't WANT everyone here.  I wanted my mom!

Well I will update tomorrow when I have a clue about surgery and such.

MarylandCrab:   I'm glad your family is coming to help, I'm sure your mom wants to be here for you too.  And keep away the people who drain you.

Margie: Praising God there is no hot spot anywhere else via PET scan. Thank you Lord!!!  Continued prayers!

Rosey: I am upset.  I got on facebook and find that a family member posted all about me.  They asked for prayer because I finally posted I had cancer.  That was fine.  But then the details of what kind of cancer, my surgeries and medical plan as well were announced..

I told KJ I might have posted that information myself later. But I had not yet made the decision!   I thought it was mine to make.  I hate this.  My husband has coworkers advising him on what I should and shouldn't do.  I have friends telling me to be positive and eat blueberries.  I'm a little sensitive because it feels like everyone is just talking about my breasts. Do I have no right to privacy or to control the release of information about my own medical condition?  Note to my friends...when a family member or friend tells you they have something going on, never release MORE information than they give first.  Even if they have released a prayer request or posted and tweeted it, ask before you share it.  If nothing else, I'm just still reeling from all this and trying to cope with this myself.  Having all these people comment to me is like "in my face" personal and the boundaries seem blurred.  Kind of like how so many people think its okay to touch someone's belly when they are pregnant.

Paula: No pressure, but you do have to write a book.  :) Just kidding.

I loved the butt cheek boogie story. Oh my.

I am so impressed with all the things you are doing to get ready for this. I don't even know if these things would occur to me. I think it will make everything go so much easier.

I'm sorry about the drama with your family.  :)  I am sorry that people are imposing their views on dealing with cancer on you. People do that with miscarriage and other grief as well, and it is never helpful.

Shelley: You continue to do what works best for you and your family, you are doing so great. You are an inspiration.  My friend made me a pink bracelet and I'm wearing it every day. It reminds me to pray. I even have specific prayers for certain beads...healing, peace, strength, wisdom for doctors, KJ and James...etc... so if you have a certain thing you want daily prayer for, let me know, and I will make a bead stand for that so I remember.

I love you and I'm proud of you.  

Rosey:   That's cool Shelley about the beads. I wish I could cancel the whole day with my family. But I know mom wants to see me before I start chemo. sigh.  I personally believe that mom wants to be here because she is not certain she will be able to come to the big surgery.   It stinks that a person can't just fight their cancer. They have to deal with the family expectations and needs as well.

Fighting Cancer is harder 

when you feel you have to fight your family.

Running Into Chaos Part 3 - The Hounds

I completed nursing school with honors and secured a job in my dream position, the reason I went to nursing school - Maternal/fetal medicine.  I was an OB labor & Delivery, OR scrub and Newborn nursery nurse.  Our life was reduced to running to and from jobs, child care, messy home, fast food meals and very little family life.  But we loved our son, we had a home and we were living the "American" dream.  Yee haw.

But inside I was a mess. It was that Christian upbringing.  I was fully aware that I was playing with my own eternity. I knew that I was in willful defiance of His will, and I believed should I die in that state, my eternity was not going to be heavenly.  That scared me.  It scared me a lot.  I became obsessed with my health and wouldn't you know, my blood pressure went up, my cholesterol wasn't great.  I was starting to notice signs of diabetes, and I started having flashing blinkers in my vision.  The doctor put me through all the work up for a brain tumor.

That Mother's Day, I held my son and cried, wondering if it was our last one together.  Would he remember me as a 3 year old?  I did not dare ask God for deliverance.  His answer was going to be "no."  The tests were negative for tumors.  I was having "optical migraines" and it was easily treated by drugs.  I was smug as I told God, "See?  I did this without you."

However it's important to note that my personality did not change.  I did not pick up cursing.  I didn't start drinking, I didn't run around on my husband, I did not party all night.  I didn't do any of those things that the pastor of my childhood church warned us would happen to those who turn away.  Basically to those who did not know better, they would not know anything had changed.

My husband also fell away during this time.  His was not a decision, it was just a "life got in the way" period of time.  But even though he was not faithfully attending church, his heart was still tender toward God.  He did not have the anger in him that I did.  He still loved his contemporary Christian music and bought new cd's as they came out.  He would put Petra, Whiteheart or Dallas Holm and urge me to come listen to the songs.  I did not WANT to listen to songs about God's goodness or faithfulness.  In fact, I would react to anger at his suggestions and he would look confused.  He did not have a clue of how far I had pulled from God.

I enjoyed my job as an OB nurse.  I dripped tears, and sniffed each time a new life was born.  I worked to stabilize them and return them to the arms of the doting, anxious patient.  Although I did not want God in MY life, I did acknowledge his goodness with each healthy delivery.  Even when we had mommas in high risk, I would pray for that momma and that babe, believing that God COULD spare them if he WOULD.  Nothing is more difficult than placing the body of infant into the arms of the grieving parents.

At the time I was hired, another new graduate nurse joined the unit at the same time.  We learned side by side, and although Tammy had lived a rougher life than I had.  She was divorced but had custody of a young son.  She had a boyfriend and a job.  She thought her life was great.  She talked of buying a house.  As new Ob nurses we worked the same shift and often our teams intersected.  We were not best friends, but nothing bonds you together like crash learning OR instruments and C-section protocol together.

For three years we all worked together.  Because of my PERSONALITY, many assumed that I was the "good Christian woman".  The fact that I did not use crude language, party with them, or share in their hysteria over dirty jokes, they decided I was one of "those" Christians.  The fact was that I was just a homebody who was in love with my husband, didn't like alcohol and couldn't bring myself to curse publicly.  My priority was there at home.  But everywhere I turned it seemed that God was there.

It was April 1st that turned my world upside down.  I arrived for my shift as usual, and changed into my scrubs.  I noted a definite subdued atmosphere in the locker room.  I walked into the nurse's lounge and quickly noted the same quietness there.  I walked up to an RN and checked into my assignment for the night.  We talked briefly about who was in labor, which doctors were "on".   Then my coworker looked at me and said, "You heard about Tammy didn't you?"  Thinking this was an April fool's joke I played along.  "Nope, what's up with Tammy."  The woman looked at me like I had a third eye when she answered, "Tammy's dead.  She hung herself."  I rejected the news.  I told her that was a sick joke, even if was April Fool's.  But she went on to tell me it was not a joke.  Tammy was dead.  She did not show up to pick her son up from the ex-husband, so concerned he broke into the house and found her dead.

I had a hard time with this news.  Tammy had been talking about buying a house, and she was fighting her husband's suit for full custody.  I had a hard time believing she just killed herself, knowing her son would go to the man she was fighting.  But it did not matter.  Tammy was gone.

I could not wrap my brain around this idea.  Here I was terrified of dying, and she leapt into death's embrace.  I couldn't process this and the entire unit was disrupted.  I remember, working in the newborn nursery and so distracted by Tammy's death, I inadvertently stuck an infant's Vit. K injection into my own forefinger. Three years without a med accident, but the night Tammy died - I stuck myself.

I had some problems with the memorial service that the hospital chaplain held for Tammy.  These crude coworkers with their potty mouths, sat crying and talking about Jesus like they knew him personally.  Then in the midst of my judgmental ravings, I was reminded I was no better.  Despite the outward conduct they exhibited, I knew that my inner defiance against God put me in the same category as they were.

Tammy's death shook me.  Everywhere I looked, I saw signs of eternity waiting.  I was terrified of dying and ending up on the wrong side of eternity.  I was becoming more and more frantic and running from God.  I felt chased.  I felt hunted.  Someone was after me and I was scared.

Pink Ribbons Post - Laughter the Best Medicine

Pink Ribbons is a feature series I have started that is posted every Wed.  I am a Pink Ribbon Warrior, having gone through the chemo, surgery, radiation, the year of waiting and recently stage 2 reconstruction...which I find is really the first of many little surgeries.  I am at a place in my life where I am willing to open my journal from that time and share with you my anger, fears, challenges and pain of finding out you have cancer.  At the end of the post, you will find the links of the previous posts from the most recent first and going back.  These are not current events.  This is me sharing with you from the other side of breast cancer. 

8/8/2010  

Yesterday was odd. I felt like I'd crashed into a wall. I was sick to my stomach and just felt like that iron weights thing. KJ wound up parking me in a chair and finishing the shopping. Pretty certain there won't be chemo this week but bought foods for it anyway. I broke down and bought him cereals, soups and fish sticks. I plan to cook and freeze meal plates this week too.  It was probably just the emotional weight of everything we have had to deal with.  The physical demand to keep coping with stress weighs you down.  Some lady stopped and asked if I was okay.  I was wiped out, but either she was an exceptionally compassionate person or I REALLY looked bad.

I have to take a chemo class and have surgery to put in the portacath. I'm sure it’s an outpatient thing. There was a amusing moment in reading about the portacath. The surgeon Dr. Etters wants me to mark where my bra straps sit and where the car seat crosses. So marking for the bra is easy. While I'm dressing, I just do it. But I was like...ummmm how do I mark where the seat belt goes on the day of surgery? The only option is to sit in the car without a shirt and do it. But I can just see all the gossip from the neighbors. lol  

Meanwhile, Robin said I had to take a test over my chemo before I started.  So I have the handouts about symptoms from Dr. Joe.  I guess I better start studying.

I rested yesterday afternoon and KJ grilled some Tbones. KC Strips were on sale but the store was out. So they subbed tbones. Then we I decided we needed an ice cream to finish the day. KJ tells me "okay I'll take you but you have to go in for it." I popped off..."oh nice. Send in the lady with cancer!" 

We both broke up laughing. It was the first time we laughed about cancer. I still went in.

During the night I was ill first with low blood sugar but then later with a diarrhea that wouldn't stop. I don't know if I was ill with a virus, food reaction or it was because of the metformin. The met does that at first and I had to stop taking it last week after the CT tests. I started it again last night, as well as my new dose of Byetta. So this morning was not fun. I took medicine for the trots but the nausea from the byetta has lingered. I'm snacking on saltines even now. I told KJ that it does concern me if THIS med makes me this nauseous, I'm worried about chemo.

But the nurse assures me they will manage those symptoms.

Fighting cancer is easier with good Laughter medicine

And the Lord said "Hey STUPID!"

When making big decisions I pray, "Lord, make this incredibly clear to the profoundly stupid."

I usually need guidance, preferring big neon signs in the sky that states "Tina...turn here."  Think of it like a cosmic GPS.  

Last weekend, we saw an ad for a "nice modular home". We drove out, and looked at the house. It was a mess. It did not matter how nice the house might look, it had no yard. It was situated in a gravel parking lot. I immediately said no. The house looked horrendous but it wouldn't matter, it was a parking lot. We turned around to leave and saw a group of men working on another home. We saw a "For Rent" sign so we stopped and walked through. The workmen assured us they were repairing the home and it was for rent.

I called the number and told the owner we were interested in THIS home after the work was done. On Monday, we put a deposit on the home. Friday, he told us "it's ready to go." There was niggling doubts that bloomed into harsh reality when we saw what this man considered to be "ready to go."

It had not been cleaned.  There was still a hole in the floor of the guest bathroom.  The walls were furry with grease and dust.  Our stomachs sunk to our toes.  We had just paid the utility deposits and several were now functioning.  It was going to be a HUGE undertaking.  The rent was $200 lower than we currently pay so we decided okay, this is not up to our standard but the payoff is that we will be 5 miles from our church.  We can be active and minister to our church.  But that hole had to be repaired.

The next day, we bought a fridge, we bought professional cleaning supplies and made plans to dive in.  But the niggling doubts about this home and that landlord were not going away.  It was late, around 10 pm when my husband on a lark looked up our landlord on google.  It was with deepening horror that we started reading "testimonials" about how bad this man was as a landlord.  We read one story about a broken AC unit that he refused to repair in a home with a hole in the guest bathroom floor.  My husband and I looked at each other in horror.  We gulped and began to think...this is not good.  A few moments later my husband exclaimed and our world turned upside down.  I won't give gory details, but a search through our state court record revealed this man was not only a bad landlord but he was a dangerous man with an extensive criminal past.  Extensive!   Not an isolated event, but 4 pages of charges, convictions and incarcerations.

It was incredibly and profoundly clear to this person...a flashing neon light yelling "HEY STUPID!  This is not MY plan!"  The only thing the Lord could have done next was to wrap the home in crime tape.

The Lord protected this stupid person who had ignored the doubts because I wanted so bad to live closer to my church family.  A friend blessed me this morning by pointing out that God STOPPED us from this mistake.  It means He has something better in store.  I'm waiting for the next neon sign.

Now to attempt to get all those deposits returned.  Oh yay!

In the meantime, my current landlady is counting her blessings.  She is elated that we aren't moving now.