My Knight in Shining Armor

My brave husband shaved my head tonight.  Even though he didn't want to, he picked up the electric razor and did what I asked.  As my daughter said, I'm leaving my DNA all over the place and I had enough.   He was gentle and kind.  Since it was just the two of us, no pictures were done to document the event.  Perhaps I will be brave enough to share my bare head, perhaps I won't.  We didn't do anything creative, like shave designs or a mohawk ... nothing fun or exciting. 

I'm wearing a scarf tonight to get use to the feel. After wearing a hat all day, with my dead hair underneath, I absolutely pulled it off my head as soon as I got home from work. It was itchy, hot and bothersome. I tried on the borrowed wig tonight and need to get it fitted before I wear it. 

Me & my windshield wiper eyebrows

Mom was right, my head is perfectly round.  (she mentioned that I had a nice round head as a baby)

My hair will grow back.

And this canzer-thingy will not define me.

Neither will what I look like.


My knight in shining armor wrote me this poem when we were engaged. He tells me several times a day just how much he loves me ~

You Are

You are the Passion of my Romance and the Pillar of my Support

You calm me in the Storms of my Days

You smooth away my Coarseness

You run by my side and put me in Importance

You bring Surety to my Doubts

And bring Clarity when things seem Confused

You are the Green Pastures that He has led me to

You are my Palace which stands upon the Rock our Lord

You are my Jewel that is shined upon by the Light our Lord

You are my confidant, my best friend, my soulmate,

And I pray for the day that You are my Wife.

                   I Love You Carol Lynn Landon

Learning How to Tie Scarves

Shopping

Expressing Myself

This weekend went REALLY fast! Today, Christie, mom & I went to lunch, movie and shopping.  We laughed at "One for the Money" and bought more hats and scarfs.  I hated trying them on, as I was afraid of leaving bits of my hair in them (sorry folks). 

Christie brought over a razor for me...just not sure when I will be doing it, but know that it will be in the next few days.  My head feels weird.  It's like I hit the the back of my head on pavement. Or like I've been wearing a helmet all day and just took it off...that heavy feeling and my hair isn't connected to my scalp.

Matt's getting freaked out every time I show him a fist full of hair.  I think its kinda funny (not ha-ha funny, but strange funny).  When I wash my face tonight, I wonder if I'm going to wash my eyebrows off.  Now, that is what is STRANGE.  How are you going to know my expression? At least with a hat or wig, I look half way normal .... but, no eyebrows?  Oh, draw them on?  I'm the person who would touch my face and have it smeared all up on my forehead. 

My kids already make fun of my "windshield wiper" eyebrows.  Casey has a nice arch, Jasmine is working on hers too. 









Anyway, just wanted to vent a little on that topic.  Some day, this will all end and my hair will grow again.  Those who love me will still love me.

And the perk? I don't have razor stubble on my legs.  Smooooooth.....

Nutrients

I have been following Lil Blue Boo. Her blog is very creative and informative. Please read this post on Nutrients and incorporate it into your life.

http://www.lilblueboo.com/2012/01/a-lecture-from-dr-mom.html

It's Begun

A wonderful warm shower this morning ... and a fist full of hair.

Lookin' a little Junkie

The Gorge

This morning, I had my first INR Blood Test which measured 1.8.  Doc said I'm right on target (needs to be between 2-3).  She said I don't have to take the remainder of the shots (Framine) as the blood thinners are doing what it needs to do.  There are 2 shots left, which she wants me to save in case my numbers get low again.  I look like a "junkie" on my belly as the needle marks are leaving bruises.

She wants another test next Friday and then every 2 weeks.  She asked me if I was up to collecting my own numbers and adjusting my Coumidine accordingly.  Sure, why not?  I just call in for the results and if I'm unsure, I'll ask.  Taking 5mg now....either add to it or take it every other day, etc. 

I also asked to have them at the "satellite" medical center closer to work and she said yes.  It's getting old going downtown already!

Today is a good day.  Already dreading next Thursday, but I'm trying to just focus on today ... in the moment .... right?!

Matt came home from school last night very sick.  He doesn't want to spread his germs, so has taken precautions as much as possible.  Bummer :(

IT'S FRIDAY!  May your day be as awesome as you are!

You are Beautiful

Oncotype DX Revisited

Blue Ridge Parkway

During my follow-up appointment with Doc Esther, I mentioned that the surgeon had ordered the Oncotype DX test. (see post "The Day After - Jan 13") I had agreed to the test in a phone call with the agency and asked Doc if the results would make a difference in my treatments.  She said that I tested positive for all 3 areas that matter and the test would not provide anything new.  Doc recommended cancelling the order.  Okay, so it cost $4,100 ... I have no problems cancelling if the information is redundant.  Even tho they said I qualified for financial aid, I didn't have that in writing.  Makes me leary ~

I called to first find out if the test was already completed and therefore too late to cancel.  It would be complete within 24 hours and if I wanted to cancel it, my oncologist had to make the call.  Well, I'm the one who has to pay for it, why can't I be the one to cancel it? 

This morning, the Doc's office took care of it.  THANKFULLY.

Lesson learned - remember that there is a WHOLE lot of people on your "team".  Make sure the right hand knows what the left hand is doing.  It didn't dawn on me that my surgeon ordered a test to decide what the best treatment is .... get it?  The medical oncologist is the one who decides the treatment.  Light bulb!

All's well that ends well ~

PS  I feel good today.  :)

No Pressure Here

I do believe the blood thinner is working! My arm does not hurt as bad and the pressure seems to be easing.  Matt gave me the shot in my belly this morning and did a fabulous job.  4 more to go!

More good news .... I have my taste buds back! Yeah!  Hubby made steak for dinner tonight and I could actually taste it.

He drove me to/from work today as I wasn't sure how shaky I was gonna be. 

Sis' Backyard

Life is good ~ Isn't it?

I feel free as a bird.

Elf-like Earrings

A few years ago, I picked up these earrings at an art expo.  Aren't they way cool?  I didn't wear them much because of my long hair, but now....

Matt took this picture Jan 21. Just showing off my short cut.  A very different look for me.

Somebody Just Shoot Me ~ Would ya?

My hospital room was a private room and I was certainly grateful for that.  It's been awhile since I've been overnight in the hospital.  All the nurses were great, no problem there.  I tried to fall asleep by 11:00, but as tired as I was, struggled.  My arm was pounding and it was difficult getting comfortable. About 2:30, I asked Nurse Ashley for the sleeping pill she had on order.  I think it worked by 4:00.  I got up between 6-7am (I think) and got myself ready to go home.

Matt arrived about 8:30am to learn how to give me a shot.  He has experience with a diabetic, so it set my mind at ease.  We had to first wait for Doc Esther to do her rounds and to provide the prescriptions.  When I saw her, she said that I would need to take blood thinners for at least 3 months if not for the whole duration of chemotherapy :( 

I asked her how many blood clots and she said "multiple". My arm experienced trauma from the port. (anybody see pictures of that?!)  Okay, so the port was put in Jan 4. My first chemo was Jan 12. And now my follow up was Jan 23.  Besides calling the doc's office last week, there were a few times that she did see my arm AND I did give her photos when I saw her Jan 12.  (the ones you see in my earlier post).  I told her that I was glad she listened to me and that she ordered the ultrasound.  I hope I was letting her know that "hey, I know my body and it was telling me it was off.  Next time, listen to me clearer".  How about this....next time I speak LOUDER.  In her own words, she told me to get bitchier. For those who know me, not quite my style....but this is one thing that you don't have to tell me twice.

After she left, we had to wait for the pharmacy to bring the kit and show us how to use it.  We waited and waited.  Then, we were given the script to pick it up at CVS.  The pharmacist called it in for price and the Lovenox was $1,000.  No can do.  Give me something else or forget it.  So then we waited more hours as they determined that Fragmin could be an alternative.  But, guess what, still expensive. So, the social worker came in next to see if we qualify for financial aid.  But do you know how long that takes?  I'll need my next shot at 9pm.   Feel like I'm behind the eight ball.

She came back in with the offer that they may have some "in reserve".  If so, we could make arrangements to pick it up.  By 12:30, we were heading back to the McDowell center to pick up the needed syringes and God has blessed us .... free!  PLUS instead of twice a day, I only need 1 shot per day. I like that!

I would say "somebody just shoot me!"  And it looks like it will be possible.

Home by 1pm, lunch in my belly.  A quick note to catch everyone up. And a thank you to all those that cared for me Ashley, Gea, the social workers.

Colorado

As I was at the discharge desk, I met a beautiful woman who had just lost her mom 5 months ago to breast cancer.  I understand her sadness.  Her mom was her best friend.  I'm glad that my heart and mind was open to receive her (and not still inside my own drama).  I plan to visit her from time to time just to say hi and to keep her in my daily prayers.

Now for some rest ~

First Follow-up Post Chemo & Hospital Stay

Very long day....but now that I am finally settled in my hospital bed (10:25pm), I'll try to recount the events of today.

My appointment with Doc Esther was at 1pm today.  My blood count (napir) was great and I got the opportunity to ask her a lot of questions.

First on the list was my port and the fact that I had deep blue veins showing through my skin.  It was still tender and sore.  Once she examined me, she decided to have an ultrasound done to check for blood clots.  Her assistant got it set up for 4:00 today and the work order said "Hold patient".  So, I wasn't going anywhere until the test was read and my doctor reviewed it.  So, I waited in the waiting room (good name to call the room) until I got antsy around 5:20p and asked them if I could go home.  The receptionist said my doctor is calling me on the hallway phone.  Doc Esther said that there were blood clots and that she wanted me to report to admitting in the main hospital.  Whaaa???? I wasn't ready for that! No overnight bag....what about my car?.....what about my husband?  (you should call him, she said).....my head is swimming (I know that, dear, but you just need to go to the admitting desk and they will take care of you).

I called Matt to tell him and he quickly made arrangements to get to the hospital.  Jasmine was with him as she was coming over for dinner tonight.  My brother-in-law dropped them off at the hospital so Matt could take my car back home (good thinking sis).  They arrived while I was still in the lobby waiting for my transportation.  We decided to get dinner at the cafe since I would be missing the dinner hour on the floor.  Salad was great ~

While we waited, Doc Esther walked by, saw me, and stopped to explain further what was going to happen.  Cumadine takes too long to take effect in the body, so in the meantime, I am to get shots of Lovenox in my belly. They have kits and will teach us how to self administer twice a day in the belly for five days.  Wow, what a turn of events!

So, I finally got settled in.  Family has gone home. Meds have been given. Shot has been given. Now, I've just settled back with the laptop that mom & Tommy got and listening to the constant beep in the hallway. 

The pharmacist will be here in the morning to show us how to administer the shot.  After that, I should be able to go home. 

I did call the doctor's office Friday about the port, but was told it was normal.  I mentioned that I didn't want to call and bug and Doc said "you have to be a bitch. you have to nag"  So, next time, I'm going to press harder because I did know something was "off" in my body. 

Some of the other questions:

1) pH balance and vitamin supplements (specially Vitamin D): Doc wasn't very keen on either ideas.  She said the kidneys already did a fabulous job of balancing the body.  If I drink milk, then I am probably getting enough Vit D.  Always room for better food intake and I know I need to do better in this area. Feedback?

2) Talked about the bone-crushing effects and the neuropathy. Doc said that each chemo treatment would have a different level of pain and symptoms each time.  She agreed to change my pain meds. (relief)

3) Talked about chemo and radiation treatment....staying on course? or any changes?  5 more treatments, plus 11 more for the Herceptin.  Then radiation.  Any chance we can cancel the radiation? "not a chance, there would be a 40% chance of canzer coming  back if we don't". hmmmmm

My notes are out in the car,  but this is what I remember so far.

My night nurse, Ashley, has been great.  She is personable and told me about her mother's experience (6 years survivor and doing well).  Her brother is studying pharmaceuticals in Germany and you can tell how proud she is of him.

Backyard

Getting tired, so I'll sign off for now.  I'll certainly keep you posted!
Sleep well ~

Be an Active Participant

I've been reading the Breast Cancer: 50 Essential Things You Can Do book that my sister bought me.  I think it is even a book for people without cancer as it is geared towards "us" being an active participant in our own healing and wellness.  That is something we can all do everyday in all areas of body, mind and spirit.  "The most important person on your health and healing team is you! You are the one who is ill. It is you who must work to get well again. You are the character of central importance. You are in charge."

Sometimes I wonder if treatment started too fast.  I've read that 2nd opinions are strongly recommended....I didn't get one.  I trusted in the fact that my medical oncologist is the head of the department.  I see her Monday to follow-up since my first treatment.  I plan to have a list of questions and concerns for her.  The answers or responses I get will tell me if I'm making right decisions for myself.

Yesterday (Friday), I went to work and wore one of my new hats.  Just wanted to try it out to see how it would feel wearing it all day.  Not too bad.  I felt stronger today, although concentration is still a struggle.  Got my "medicine" of hugs, which is always appreciated.  I'm a hugger. 

My concern is the port.  It is still very, very sore, especially in my arm pit. Deep blue veins are showing from the port across my chest to my breast.  I don't have these veins showing anywhere else on my body like that.  Very strange ... it makes me wonder if something is blocked or wrong.  That will be concern/question on the top of the list when I see her.  If I had a fever or any other sign, trust me, I would go to the ER. 

The neuropathy has been aggrevating. The numb tingling sensation in my hands and feet is worse than hitting your crazy bone on your elbow.  I pray this abates .... today is Day 9 post treatment.

So, over the weekend, I hope to get my notes pulled together to provide Doc Esther with my pain levels, medications taken and any other information since treatment. One thing I can say is that the nausea medicine worked.  I felt queasy at times, but never got "sick".  That's a good thing!  The metallic taste in my mouth and the neuropathy is probably the biggest problem (so far).

I hope you have a wonderful, happy weekend.  We got blasted overnight with a snow storm. The landscape is beautifully white.  May this day be filled with peace ~

Why I am Where I am

Today, I made it through a full shift of work! Oh boy, was I tired, but I did it.  I'm so grateful to have the type of job I do have.  I work in the world of HR/Benefits, mainly leave of absences.  Expert in FMLA.  With this, comes dealing with medical issues and benefits ... but more importantly, people.  In hospice situations, I get involved with their families as well.  There are very special memories I have kissing the cheek of someone who is taking their last breathe.  I whisper, "save a dance for me in heaven".  The special bond with those families is something I will always treasure.

After a month of feeling consumed with my own illness, I was reminded today of why I am where I am. God surely knew where I would be of most value to Him in this world.  I am grateful indeed.

Despite the roller coaster, today was a triumphant day as I rested in God's grace.

pH Balance

As I read through other blogs trying to find resources, encouragement, etc. (see blog list) I came across

pH Balance

What do you think? (scroll down to the chart)

To Cathy

Cathy has been in a lot of conversations lately.  Especially since getting my hair cut.  It brings me back to the poem I wrote a few years ago.  Until We Meet Again

I love you
I miss you

A Chance to Refocus

Blue Ridge Parkway

Thank God for New Days ~

Your prayers for me are always appreciated.  A friend of mine called me tonight and as usual, prays with me before hanging up.  It brings a new meaning to "I'll say a prayer for you".  To hear the words straight to God and to feel warmth inside my soul brings peace.  The timing was perfect. It was also a chance to pray for her, especially for her upcoming missions trip to Haiti.  A chance to "refocus". 

Matt drove me to work this morning. I had a mini meltdown before pulling out of the drive, but I was determined to get my routine going again and to focus on others again.  First call that came in was from an employee whose family member committed suicide.  Refocus.  It's not just about me.

The first person I saw did a double-take with my new hair-do.  She is going on this journey as well and has been a great encourager.  It was surprising how many people didn't recognize me at first.  I've never had my hair this short before.  And I was surprised by new dangly earrings from Miss Debbie :)

By mid-morning, I knew that I wasn't going to last a full shift.  Christie was able to pick me up by 3:00 to take me home.  6 hours of work! Progress!  Sure did move slow, though...hands still hurt, gut hurts, fatigue, but today I know that tomorrow will be better.  Because each day does.

Back to work ... Well, Almost

I cried myself to sleep last night.  The pain in my feet and hands returned full force and my nausea kicked up.  I settled into a fitful sleep after taking a pain pill.  

The alarm went off and I found myself shuffling instead of walking.  Actually, I was walking like I had M.S.  Very unstable.  As I washed my short hair, reality kicked me in the gut again.  That keeps happening.  I got fully ready for work though. Nose bleeding, hands swollen, bones hurting and hubby said he didn't want me driving.  I really wasn't sure how I would anyway.  I certainly didn't want to hurt anyone on the road.  This is frustrating.  I called off work...just one more day...pjs back on.  I'm freezing.  I can see I need a scarf for my bare neck.

It's mid afternoon now and my gait is better.  Please continue to get better....

I was reading some other blogs wondering why my 4th and 5th day isn't "rosy" as what I was lead to believe.  Every one is different and every cocktail is different.  That is the bottom line.  I feel like apologizing to the world for not being a better sport about all this.  For not bouncing back quickly.

Then my sister said that honesty is the  best policy and that sometimes it just helps to know there is a witness.  I think she's right.  I can only relay my journey as honestly as I can and allow you to be my witness.  So, when all this is finally done, you will be a testimony to my story.

In other news, today is Matt's first day back to school.  He was worried leaving me all day.  It will be after 8pm when he gets back.  This is important though and I want him to continue striving for his dreams. 

That is what each one of us should do each day.  Live every moment like it was your last.  Be completely filled up with joy and love and laughter.  That is my wish to you ~

Just Chop it Off ~

Today is Day 4 after chemo.  Better than Day 3 .... but that "better" didn't happen until early evening.  The pain in my joints have lessened. The queasy feeling is still there.  Now I know the days I'll probably miss work.  Thursday and Monday.  Today, was like a mac truck hit me.

Oh well, life keeps going on.

My sister hooked me up with a friend who cuts hair.  Debbie was very gracious to come over to my home to "get 'er done".  It shocked me looking in the mirror ... I saw Cathy. 

Just a short cut to get use to being shiny as a cue ball.  Once my hair starts falling out, Matt is going to shave it for me.  He wants to give me a Mr T look first.  Boys ~

My Album

Day 3

I woke up at midnight with the worse pain in my joints. All day, it felt as if someone smashed my bones with a hammer.  My knees, ankles, feet and hands.  I've had 3 pain pills throughout the day, with no relief.  Headache, queasy.  I hope that this is the worst of it and the last day of it.

Tomorrow is a holiday and, thankfully, no work.  I'm not sure how all this is going to effect my work schedule. I got my paycheck from being off work and it was low.  I just need to figure out how to toughen up and not miss much work.

Sis brought over a wonderful meal of roast and potatoes.  I'm so grateful!

I'm anxious to feel well enough to take the camera out and snap some winter wonder landscape.  Feeling a tad couped up!  Plan to get my stitches out tomorrow from the port. 

It's early evening and I'm finally able to move my fingers enough to type.  Things can only get better. Right?

Day 2

I've been told that side effects generally start on day 2 after chemo.  I'm tired today, had a few queasy moments, body aches, lots of bathroom visits .... but, I'm hanging in there.  Mom made homemade chicken noodle soup, which hit the spot.  I can tell that I'm loosing some tastebuds though.

Christie stopped over tonight to visit.  Glad she did because I haven't seen her in several days since she's been sick.  She looked like a doctor with her blue mask on.  Lots of Purell too.  My laptop wouldn't turn on, so Tommy came over too ... he did a quick fix with the battery.  So, I'm back in contact with the world.

I have to admit that I had a little pitty party today.  Hope I don't have too many of them.  Real downers.  That's not generally who I am.  I pray for strength as this is going to be a long haul. 

Isn't it strange how life can be just moving along and then it all changes out of nowhere.  When my sister died, we all had to live in the "new norm".  It's difficult, but you have no choice.  I have no choice.  And I can't sit around feeling sorry for myself when there are others who are dealing with this canzer-thingy so much worse.  So, I apologize for my rantings.....

Life goes on.  One day at a time. Right?

And tomorrow is a new day.

Thank you, Jesus, for never letting me go.

The Day After - January 13

I'm not superstitious (don't tell grandpa). So, today is just another day.  Woke up to a whole lot of snow.  First heavy one since winter started. 

Slept on/off last night, kinda tired today.  Had a bowl of cheerios (good) and a cup of coffee (not so good).  Note to self, no coffee after chemo.  Took all required meds this morning...fighting off nausea.

Called Radiology today about my stitches.  Suppose to get them removed 7-10 days, today is Day 8.  She told me to stay home because of the weather and that Monday would be just fine.  Happen to have Monday off work, so that is fantastic. 

In the meantime, Matt was busy snowblowing.  He wanted to keep up with it anyway. 

Got a call today regarding a test of gene patterns called Oncotype DX.  There is still research to show if this test is beneficial, but I think anything that we can do to help others is worth it.  After talking about costs ($4,100) and I qualify for financial support bringing the total to ($0), I said yes. 

Ordered my hats & scarves today.  Should be here in 2-3 days (I hope).

Gonna bundle up and go rest today.  May God keep you safe and comfort you always.

First Chemo Treatment - January 12, 2012

Before we left, I had to rub the "numbing cream" on my port (1-1/2 hr prior to treatment).  Once on, wrap it with saran wrap.  Don't try this on your own, lol.  Many hands are needed for this.  It did help, as I didn't feel a thing ~

Well, we arrived at 8:30 to check in.  I got a card to swipe like I got in radiation office. Our first meeting was with Denise, our social worker.  Very nice young lady who described what to expect and to offer her assistance as the "navigator".... to help with billing disputes or financial assistance, to gauge my stress levels and help with various other counseling needs.

After that, we were called back to our little nook and settled in.  My nurse today is Gina.  She has 4 year old twins!  Before chemo, I had to have blood work to get my baseline and levels, EKG.  All set up with the port, which was numb from the "numbing cream" I put on before we left home. We had to wait for the results to come back in order to clear me for my cocktail. Doc Esther came in to give the all clear and check me.  I gave her the 2 pictures of my arm for my file, lol.

The pharmacist, Nicole, explained each of the medicines that will be used.  (I have to adjust an earlier post).  My cocktail is still TCH for 18 weeks = 6 treatments

11:10am My first medicine was Herceptin.  The IV for the first treatment is 1-1/2 hour long "loading dose". The remainder treatments will only be 1/2 hour. Before I get Herceptin, I took benedryl and Tylenol.  Nicole explained that "H" is a "smart" chemo drug that is specific to the cancer its treating.  This is also the one that my heart is closely monitored for side effects.  I will have an echo every 3 months.  Did you catch that? I will be on Herceptin every 3 weeks for a full year.  I didn't catch on that before.  I had the impression it was pill I would be taking. *sigh*  HOWEVER, by ITSELF, there are no side effects.

I took a nap during the Herceptin.

Next, Taxotere.  3 hour infusion. 6 weeks total. They are watching for allergic reactions. Such as chills, labored breathing, flushed, chest pains.  So far, so good. Before the chemo med was connected, they gave me steroid, pepsid and benydryl (again). So, this is the one where I lose my hair, lowers my blood count and can get neuropathy (hence the ice bags on my feet and hands to narrow my blood flow).  Body aches during the first 24 hours thru 3 days.  IV done 4:34pm

Remember the TV commercial Madge and Palmolive?  This is my rendition.

Quite a process of untying the bags from my feet, removing the pressure cuff from my leg and taking my IV stand with me to the bathroom.  All those fluides. Which was A LOT of times throughout the day.  A LOT.

3rd is Carboplatin. Started 4:45pm, infusion 30 minutes.  Side effects nausea. They will want to check my kidneys periodically. After that, they will flush with saline and run an anti-clogging medicine. Then home. I'm the last patient here.  All the nurses are gone but two.  Nice and quiet ~

From My Viewpoint

Dad & Marge stopped by to wish me luck.  Dad also gave a gift for hats, scarves.  Mom is making dinner for us tonight. I'm so very thankful!


Everyone has been very kind here.  I think I will see what Stewart's Place is all about since everyone keeps talking about it. 

I really need to do a better job in drinking water and eating better.  I don't eat junk, but I don't eat much of nothing else either.  Plus, EXERCISE!

Doesn't look like I will be able to get the stitches out today as the nurses in Radiology will be gone by the time I get out of here.  Hmmmm.....

We got home around 6:00pm.  Dinner, resting.  Tired, but no side effects (yet) from Chemo.

Thanks for walking thru my day with me ~

My Goodie Bag

Well, I think I have packed everything but the kitchen sink .... no, not really, but an all day treatment seems daunting so I have assembled items to keep me busy.  Laptop...check! Magazines...check! Audio Books...check! Blanket with pockets...check! Deck of cards...check!  And, the loads of literature given to me since day one of learning I have canzer.  I haven't had enough quiet moments to sit down and focus on them.  (need to remember to take a highlighter)

I finished 3 full days of work, which just wasn't enough to really catch up.  I have no idea how I will feel Friday, so I planned as if I might not be at work just in case.  It was mid afternoon when I discovered that we have Monday off work for Martin Luther King day.  *chuckle* Where has this month gone?  I probably would have shown up for work in an empty parking lot.  Well, that just means one more day to recouperate.  YEAH!

I got several hugs today which has put me on cloud nine.  It is so important to feel that you are not alone. 

I'm feeling okay, a little tired, but okay.  My arm is manageable, but on the pain scale, probably a 4.

I'll be in touch throughout the day! If you think of it, say a little prayer for me.  Thank you ~

Echo

This morning, I left work to go get the echo ultrasound.  It was strange watching my heart beat on the monitor .... similar to watching a baby in the womb.  The valve looked like a tiny hammer keeping  rhythm to my breathing.  The lady tech said she needed 80 slices (photos) and as I watched the screen I let my mind wonder. 

This test will determine if my heart can withstand my cocktail.  She said that the doc will get the results in a few days .... well, in a few days I will be having my first chemo treatment.  They better have it in time *geeze*

The most asked question I get from women is "did you feel anything? a lump?". The tech asked me this one. I said "nope, just my annual mammogram".  She mentioned that it had been a couple years and she promised me that she would make an appointment.  I feel like a walking testimony.

When the test was done, I ran into the nurse from radiology who held my hand during the port insertion.  I asked her if I could get the stitches out now, but she said 7 days (only been 5).  So, I'm going to try on chemo day.  The stitches get caught on my clothes, ouch.  The bruise is now yellow and healing.

I picked up the 2 photos of "my bruise" that I'm giving to Doc Esther so she can see for herself that I bruise easy.  I feel the need to "prove" that I'm not a big wimp. 

Tired. Worked some overtime past 2 days to make up hours for the echo. 

More tomorrow ~

Reasons to Smile

The outpouring of love given to me and my husband has been overwhelming.  Offers of taking me to appointments, sitting with me during chemo treatments, making dinners, flowers ... I am grateful, thankful, encouraged, hopeful, emotional, you get the drift.

Tonight, my sister provided dinner of homemade cheesy potatoes and honey baked ham. DELICIOUS!

Plus, my nephew brought over my first and very own laptop! I can't even believe it! Thanks to my momma and Tom, I will have something to do during the long hours of chemo.  Happy, happy, joy, joy!

My 48 hours were up today to remove the bandages from the port.  It feels better today and the bruising is going away.  The stitches will be removed Thursday.

Plus, I was able to take a shower since the procedure (couldn't get it wet). I'm clean!!!

Which reminds me, when I went for my follow-up with the surgeon, she gave me permission to shave.  That was last Monday, but forgot to let you know.  hahahaha, no french braiding here!

Thank you for riding this roller coaster with me.  It's nice to know I'm not alone :)

My Cocktail

My 3 chemo meds are:

Taxotere - the dreaded hair loss and neuropathy.  Low white and red blood cell count which increases risk for infection.

Herceptin - chills, fever during first infusion, body pain, weakness, nausea. An echo is required to make sure my heart can withstand it.  Sheduled for Jan 10.

Carboplatin - More of the above, plus taste changes.

Well, you can see for yourself.  This is the stuff that is going to kill any cancer cells growing in my body. 

Progressive Muscle Relaxation
No More Nausea
Fight Back against side effects
Serious Side of Side Effects
Preparation is Key

First Day Back To Work

I think a person who is pushing the envelope to get back to "normalcy" should go back to work on a Friday....highly recommended.  I managed to put in 5 hours, but the achiness of my arm and not sleeping well did me in.  As you can see from the bruise, it feels like someone gave me a knuckle sandwich a hundred fold.

It was my first time driving since Dec 20.  I'm so glad the sun was out and no ice/snow to contend with.  I'm cut on the right side and cut on the left.  I need to find some humor in this...somehow.

I called nurse Rose to find out if there were signs I should be looking for regarding the port....I wonder how much they believe I am bruised.  Anyway, she said I should be elevating and icing it.  Another reason to be home.

Matt took Casey to the Amtrak station after midnight on Thursday.  Her train was delayed until 5am Friday morning.  I just heard from her and she is in Denver waiting for the bus to come.  She should be at her home by 7pm our time.  Miss her already.

Anyway, another reason why I'm so dang tired.  When they left, I woke up. When Matt came back home (3:45am), I woke up and couldn't get back to sleep.  Got out of bed by 6am to get ready for work.

I'm rambling.  All in all, glad it is the weekend to finish healing from the port.  I can remove the bandage after 48 hours (this afternoon).

Trying to wrap my brain around this coming Thursday. 

Power Injectable Port

The intensity of this procedure was totally unexpected.  You see yesterday, when I met with Doc Esther, I mentioned that I would like to get back to work by Friday.  She agreed and said that returning to a routine would be great.  What she didn’t tell me was how terrible inserting the port was going to be.  I must be a wimp or something. 

Day of Insertion

OUCH!

This was an hour long process in a surgery-like room.  Gowns, masks, the whole thing.  But instead of lovely sleep, it was a local anesthesia.  Thankfully, the medical team was compassionate. Pat was the lead and she walked me through the procedure to let me know when it was “going to hurt”, when to breathe, and when to "go to my happy place" (which I chose Colorado).   So, this round device goes under the skin and a wire is inserted thru the vein to your heart.  Once it is PUSHED into place, you are stitched up and bandaged. 

I consider myself somewhat a tough cookie.  You can’t go through life with endometriosis and not learn to develop pain management.  But, THIS WAS PAINFUL.  On a scale from 0-10, I’d say a 20. 

REALITY CHECK! THIS IS NOT A DREAM!

Nope, can’t wake up from this.  So, again, I have to say, no choice but to walk through this journey holding God’s hand.  I am so blessed with all the support from friends and family. 

As I write this, about 7 hours have passed since the procedure.  Yes, I took a pain pill, okay 2.  On a scale from 0-10, now a 4. Time, a nap, a pill = my life.

In 7-10 days, the stitches come out.  I will probably do that on Jan 12 (first day of chemo). I am to carry information the size of a credit card to show for future tests, such as CT-scan or MRI (to show the type of port)

Work tomorrow.

Orientation Day

Today, we got a tour of the treatment spaces (not rooms, no privacy here). Recliner chairs sectioned off by waist high walls.  Nurse Julie gave the power point presentation and went through the basics of chemotherapy.  And then she discussed the dreaded side effects. 

There were 2 other patients present with family.  Matt & Christie were by my side J

Nurse Julie gave me write ups on 2 drugs that where in my cocktail.  She informed me that I “may” need a $16,000 shot the day after chemo if my blood count was low.  I kept looking at the hand-out that she provided because it didn’t match what Doc Esther had given me the day before.  Glad I spoke up …. It was the other patient’s hand-out.  Now I didn’t have to worry about the $16,000 shot. Instead, I get to worry about the peripheral neuropathy (numbness in fingers and toes).  I already have Raynaud’s and truly didn’t want to have more sensations in my extremities. *sigh*

One of the biggest concerns will be infection.  My body won’t be able to fight it.  No cuts, no germs, etc.  I am to take my temperature DAILY and if it is ever 100.5, this would be considered an emergency and to call the oncologist.  Sometimes you can bypass the ER (germs) and go straight to the oncologist floor at the hospital.  Certainly hope none of this happens.  So, for those folks who want to visit, please be healthy when you do! Purell! Wash your hands! I know I will.

And, for the biggest news, my treatment duration will be 8 hours.  *sigh*

Going to find a laptop to pass the time.

Books.
Sleep.
See how friendly my chemo neighbors are, strike up a conversation.

I will attach my medicine information as soon as I can scan and upload.

Then, we headed for the port …. All aboard! *I want off*

Chemo Starts Next Week

Chemo starts Thursday, January 12 @ 8:30am.  The HER2 test was positive. As with this whole canzer-thingy, everything is happening very fast.  I do like Dr. Esther.  She’s a hugger too. 

Prep first:

Jan 5 – Chemo “class” a 1 hour orientation

·         Provide an overview of chemotherapy

·         Review side effects and how to manage them at home

·         Introduce you to our multidisciplinary team

The welcome packet provided has the same forms that I’ve filled out twice before at other “team”  offices.  *sigh*

Jan 5 – Power Port Placement,  not to be confused with PowerPoint

After “class”, this will be next on our agenda.  We should be able to have a bite to eat between these two schedules.  I knew my tiny veins would be an issue, hence the port.

Jan 10 – Echo

Important to know the health of my heart due to one of the medicines in my cocktail.

Jan 12 – 1^st Chemo treatment @ 8:30am

Prayers are welcome at this date & time

Cocktail: Taxatere, Carboplatin, Herceptin

Side effects: loss of hair by 3^rd week, fatigue, lower blood count (risk of infection, anemia), nausea, vomiting, neuropathy, mouth sores, nail changes, constipation, diarrhea

How am I doing?

·         Processing

·         Information overload – received tons more today

·         Accepting the fact that I’m gonna look funny bald

·         Decided that the hat & scarves are more my thing than wigs

·         Pain level from 0-10 …. Right now a 5

·         Feel brave?  Somewhat

·         Tad scared? Somewhat

At the Gorge

As my cousin said, the sooner I get started, the sooner I’ll get done.

That’s the plan ~

I know this post is kinda cryptic tonight.  Witty words are really not coming to mind.  But, believe it or not, I am okay.  I don’t really want to sit around and be a cry-baby.  Did once at Doc Esther’s office.  She gave me permission to be “a wimp” and not feel as if I have to be so strong all the time. 

So for now, I’ll keep Living in the Moment. 

Threshold of a New Year

I haven't really made a new year's resolution in a long time.  Unless I really know I'm going to meet the goal or task in hand, why speak the words?  Now I know that a healthy lifestyle change will be in order .... eating healthier and exercising more.  I quite smoking 9 years ago cold turkey.  I was determined and my kids were my motivators.  Since the lifestyle change is a must and I know I will meet the goal, you would think that this could easily be my new year's resolution.  But, I think I will challenge myself even more ....

Post Surgery Follow-up

My Rose Bush

Doc Partin said I'm healing just fine.  She hasn't released me to work just yet until she consults with the chemo doc.  My appointment is tomorrow morning with Doc Esther.

The HER2 status did come in as positive, which means chemo treatment.  How much and what kind is something Doc Esther will plan out with us. 

That's all to report for now on the canSURVIVE.

What to expect at my radiation treatments – Follow up from Dec 30 blog

Nurse Robin provided a tour of the facility and guided us through what to expect once treatment begins.  I got the usual height, weight and blood pressure junk out of the way and then she took my picture.  I’m always the one behind the lens, so this took me by surprise.  Was this a “before” and “after” to gauge how radiation treatment is going to change my appearance?  Robin said it was to help identify patients …. Okay, I can live with that.

Another new and cool idea is a swipe card.  Instead of registering at the front desk each day, just come in, swipe the card, and someone will be right with you.  Now ….not to lose the card.

I’m getting a tattoo! I know, can you believe it? After all these years, my first tat! Actually, I get 3 ~ They will put small marks on my skin to mark the treatment area.  Okay, so the tattoos are about the size of a freckle but will remain on my skin for the rest of my life. That counts, right?   

I get to make a body mold! Well, at least of my back. They explained that it is very important to lay still for the local radiation to be concentrated on the exact area to be treated. Once I’m tatted up, I will lie on the radiation table and a plaster form will mold my back.  Then, I will lay on the mold so everything lines up each time.  Note to self: I wonder if I get to store it there or do I have to bring it with me each time?

After I put on my ball gown, I will sit in a waiting room with other patients until my turn comes.  No jewelry, band-aids, powder, lotion, or deodorant.  Soon, I should be able to French braid my  one unshaven armpit. 

There will be side effects such as fatigue, red, tender, itchy sunburned skin.  They will provide Aqua4 and other petrol based creams to help.  After it is all done, I will be susceptible to sunburns all over, so I’ll need to wear a sunblock.

Important: Keep hydrated and keep the humor.

Going for Comfort

After the surgery, my doc instructed me to wear a bra 24/7 until otherwise instructed. My follow-up appointment is tomorrow, so I’ll know more then.  Anyway, I have to avoid wire …. Well, actually, all women should avoid under wire.  She was real pleased to hear that I had just received new Genie Bras from my sis.  Wearing a bra 24/7 is not the most pleasant thing, but I have to admit that the comfort of the bra makes it better. The Genie Bra

A guide to keeping your breasts healthy now and in the years to come. This article is from WebMD  A lifetime of healthy breasts   

Information Overload

So, I’ve discovered I’ve had a lot of “ectomies” in my life… Tonsillectomy, Hysterectomy, Oophorectomy, Lumpectomy.

And I’ve also noted that with as much data that is out there about each one of us, there is still a lot of systems that are not connected to one another. Even if it is in the same building.  There are SO many forms that I’ve had to fill out since my “journey” began. So, why can’t they share all this data?

And with each medical person that comes in the room, I’m asked my date of birth.  Next time, I’m asking if they are giving me a birthday card. 

Getting Organized: Anyway, I created a list of questions to prepare for the radiation oncologist appointment. My sister, Christie, posed as my secretary ~ notebook in hand, ready for onslaught of information.  It is certainly important to get organized.  In the original packet of information my surgeon gave me, I came across an organizer from American Cancer Society and requested it (free). http://www.cancer.org/MyACS/Ohio/ProgramsandServices/get-well-ohio

Family medical history: I’m glad my sister was with me to help answer our family history of cancer, not to mention other diseases. I’ve had to repeat my medicine list several times.  http://www.cancer.org/Cancer/news/Features/your-family-health-history  It’s a good idea to have this information written down … or type it and make copies for each “team” member.

Legal Documents: I already had my will and power of attorney documents done a few years ago.  (It’s a good idea to get these done if you haven’t … and if you have, keep them up-to-date). It can be a dreary subject, but in my line of work, I’ve had to assist people on many occasions. When my sister died, my husband and I not only bought plots next to her, but we took care of those pesky details.  So PLEASE do too!

http://www.cancer.org/Treatment/FindingandPayingforTreatment/UnderstandingFinancialandLegalMatters/AdvanceDirectives/advance-directives-advance-health-care-directive-formats

There are so many resources.  The home page for these links is http://www.cancer.org/index