Friday, November 30, 2012

Five Minute Friday - Wonder

Five Minute Friday

Write for 5 minutes flat – no editing, no over thinking, no backtracking. Today the prompt is Wonder.


This time of year is difficult for me as it holds so many painful memories.  Deaths, devastating surgeries, tragedies...all have piled onto the month of December over the years of my marriage.  I saw the prompt for today's 5 Minute Friday and thought...oh joy.  More pressure to perform as immediate the concept...the WONDER of Christmas filled my mind.  I shook it away.  It hurts to think about it.

Today I'm preparing cookie batter for a Family Baking day.  My sisters will join together tomorrow in one of their churches (multiple ovens) and we will spend the day, baking.  We will also spend the day laughing and complaining about the need for poise pads now we've all born our children and looking the number 50 square in the face.

This morning, to help my mind prepare for this cookie extravaganza, I put on Spotify...the internet based, listener selected radio.  Young Miss Jackie Evancho began to sing O Come All Ye Faithful.  The pure tone of her voice drew me away from the kitchen like nectar draws a bee.  I found myself standing in front of my computer, which was silly as there's no graphics to the station.  But I closed my eyes and let her voice sweep over me.  Lifting me from the clutter of my family room into the throne room of God.  

Oh Come All Ye Faithful.

My hearts pounds, the gooseflesh rises on my arms and a tiny seed sprouts within me.  Wonder.

This month holds many memories of pain and I feel so UNCHRISTIAN to tell you how much I have come to dislike having to celebration of the birth of Christ in THIS month.  I want to feel something inside, something that I can celebrate.

The Wonder.  As her clear, uncomplicated tone sweeps over me, I am reminded that one day I will stand with others...and our voices will raise in celebration to our Father and to our Savior.  I will shed the pain of earth and life and be filled with wonder to stand before them and lift my voice with all who have gone before me. My voice will rise with the same beauty of Jackie, Patti, Charlotte, or Susan.

And this my dearheart, is a balm to this hurting heart.  


This week this little bit showed up on my facebook wall.  I love flash mobs anyway but this one brought tears to my eyes as they included a special guest who appears about 4.26.  There is a young man who responds at 4:41 in such a way that caught a sob in my throat.  I share this with you...

Thursday, November 29, 2012

Pink Ribbons ~ Discussing the "Girls"

Pink Ribbons is a feature series I have started that is posted every Thursday.  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.   These are not current events.  This is me sharing with you from the other side of breast cancer.

August 2010

Well, we bought a recliner. I spent more than I thought was necessary but Mr. R was persistent. This puppy is soft and it is a Cadillac model as well. I mean it has massage and heat as well as a mini cooler. Okay the cooler is basically an insulated well with these ridged chillers. You freeze those and slip them in the well along with my protein shakes and the only reason to get out of it will be to use the toilet.

I balked a little at the price. But Mr. R is aware of my fears about bone pain. He sold me with "consider how that heat and massage will feel if your bones are hurting." And it was something to consider. K told me that I needed some comforts as well as a plain recliner. So it will arrive Friday morning before I leave for the chemo appointment.

It was bittersweet buying the recliner. I mean the salesmen wanted me to be excited. But it was hard when you are buying a recliner because the chemo center tells you a recliner works best for people coping with chemo.  I wasn't just buying a recliner for the world series. I'm getting this to help me recover through chemo and a half dozen horrendous scary surgeries. I'm glad to know I will be in the lap of comfort but I couldn't muster up the will to do a cartwheel for the sales crew. I finally told them I was getting this to help me recover and they quieted down about all the "Aren't you excited? My husband hasn't bought ME a recliner!"

My shoulder is in spasms again. There must also be a nerve very close to the port. With arm movement I get a zinger that moves from the port area down across the shoulder. I was ready to come home and rest again. I still feel like a wienie.

Got a letter from the insurance company. They graciously agreed to pay for the big expensive injections I'm getting. One to prevent nausea....that's $400 but they apparently cover at 100% under major medical. The other...the Neulasta is the bone marrow medicine that is supposed to cause the bone pain - its $1500 at retail. But apparently it too will be covered as major medical.  Thank the Lord for Insurance.

The nutrition stuff with chemo is a little overwhelming. They over stress the importance of protecting yourself from infection. I can't eat at buffets or salad bars. Where I might be able to fight a little bug from unwashed salad pieces or the tomatoes that didn't get washed well, on chemo I can't. So I have to buy processed salads not fresh deli. They suggest no deli at all in fact.

Eating out isn't even easy. I mean the guidelines say to insist that hot food is hot and cold is icy. No medium rare meats, no mayo or dairy based foods. This is gonna stink! I had another word in mind but in diffidence to those of you who don't like crude words...I'm avoiding it. But boy I'm thinking it. Something about this experience is bringing out the potty mouth in me.

Although I still feel modest. They said they will spray the port area down with a freeze spray and I'm thinking...they don't expect me to expose the girls do they? I mean yes... I am getting rid of them and building new ones but for right now...they are still mine.

I was reading a user manual on breasts and found interesting stuff.

The author hates self breast exams as promoted by breast cancer advocates. She's a "fear promoting hunt for cancer" that every woman who does one, does it in self loathing. Instead, she believes women from puberty on should be taught simply to know their own set of breasts. It's okay to touch them without "hunting for cancer" and feeling sick that you might find something. I know I was that way...doing the exam almost haphazardly hoping I would find nothing.

The whole self exam was created by a doctor a couple centuries ago because women were taught it was "nasty" to touch down there...and "down there" meant anything under the chin. So they would finally go to a doctor so riddled with cancer they couldn't ignore it anymore. The doctor came up with the self exam as a way to satisfy the puritanical need to avoid sexuality by making it only a medical exam. It's okay to touch your breasts this way because it's medical....not sexual.

So she believes that our daughters should be taught to examine their breasts...not to look for cancer. From puberty they should be taught to understand what was normal for their breasts.  Then knowing what was normal they can identify changes that don't necessarily mean cancer....but that something changed and  it needs to get checked out.

It wouldn't make a difference to me. Although it does frustrate me that so much emphasis is placed on breast LUMPS. 20% of us have a cancer that doesn't grow lumps. I DO think its interesting that in the early spring or so that I noted to KJ that I wasn't aware my right breast was hanging so much lower than the left. Had it always been that way? He didn't know. Now I find out there's cancer in that one and I can't help but wonder....was that realization a recognition that something had changed?  But I did not know this change in appearance was a sign of lobular cancer.

So what do you plan to teach your daughters about their breasts?

Meeshia:   I am being honest here (don't throw anything at me), but I very rarely have ever done a breast exam.  I guess it is because no one in my family has had breast cancer (lots of other cancers) but not BC.  So, I do it whenever I remember.  So maybe this will be a good time for all of us girls in my house to take some time to really get to know their bodies.

Rosey:  According to my book 70 - 82% of breast cancer diagnoses are those with no family history. It's truly sporadic as to who gets it and when. The other group of women know they are at risk and look for signs. Thus they are more likely to find them earlier than someone like yourself, who mistakenly believes they aren't at a high risk to develop cancer.

My only question for those like yourself or other moms with young daughters, would be how to explain what is a "normal breast". I couldn't recommend this book...Dr. Susan Love Breast book. Mainly because while it does talk of what is normal the majority of the book is about the abnormal. Which as a teenager it would have been ripe data for an overactive mind. I would have read ahead and scared myself. But not all girls would have been as bad as I am.

I've never done an "official" self exam because my breasts are lumpy and it freaks me out. HOWEVER, I do know what is normal for me and what is not.  The left one has always been bigger, etc etc. I do believe I'd know if something was "off". I got to know the girls very well while nursing. I had a lot of infections and plugged ducts and was feeling up myself a lot back then   My ob/gyn actually advocates what you do~knowing your breasts enough to know if something is wrong, but not necessarily doing an official "exam".

I don't know how I would teach a dd how to "know her breasts". Mine have always been nobby and when you press in on the tissue you feel all those nobs and bumps.

Did you know once a woman has breast fed a child she is capable of producing milk at any other point in her life? Once we have breast fed we continue to have circulating prolactin. If you squeeze or suckle the nipple, we release oxytocin which will increase the prolactin production. If you increase it enough you can continue to lactate for years. I knew that but don't think I realized it was so easy. Dang, I could have put K to work.....make me lactate and use up those ice cream calories! bwa ha ha...wouldn't that startle our dh's!  Not to mention some companies out there pays good money for breast milk to sell for sick premies.  Or you can donate directly to a NICU after you are tested.

Abeybabymama:  That must be how they had wet nurses back in the olden times. That seems so odd now to think of someone else nursing your baby.

Thursday, November 22, 2012

Thanks giving!

Sometimes I just want to say: "Yep, that is a 1st world problem. We don't feel sorry for you." ` Marcey Combs

I chuckled over this quote that showed up on my facebook wall.  My young friend Marcey was irritated at complaints they were not able to get to shop black Friday sales.  I laughed as my brain began to explode with other example of First World problems crowded into my skull.

stock photo

My dishwasher is broke!

My Mercedes was delivered in the wrong color!

The stores didn't carry the pumps in my size or the color I wanted.

stock photo

There's no ketchup for my french fries!

The ice maker in my fridge is broke!

You put Mayo on my burger when I asked for mustard!

stock photo

Do these jeans make my butt look big?

Some extreme couponer took all my favorite jelly off the shelves.

I'm not drinking any milk with today's expiration date!

Humor me, share some of your examples of your 1st World problems.  Then take a moment to be grateful that you are complaining about such trivial things.  This is my thanksgiving.  I will not point out the state of our nation or how fragile our economy is.  I'm not going to dwell on the changes that may well change our families, our communities and our holidays.  THIS thanksgiving, I am grateful for the blessings I have, so that my complaints and grousing are trivial in nature.

Wednesday, November 21, 2012

Pink Ribbons ~ Impatience!

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.   These are not current events.  This is me sharing with you from the other side of breast cancer.

August 2010
I have concluded that I am an impatient person. I want to feel normal today and I don't. grrr

I believe I am recovering well.  I have progressed from the narcotic pain meds to IB now. I took the narcotic at bedtime yesterday but the rest of the day I used IB. One of the problems is that my whole shoulder area is in spasms. I know my tissues are sensitive. Some might remember how my lap band surgery went bad because my stomach swelled shut?   I wound up in the hospital for 4 days getting IV fluids and steroids to reduce the swelling.  It seems that anything inside my body will react by swelling and spasming.  It feels like sewing the port down to the pectoralis muscle has sent that whole cluster of muscles into spasm. At first it was just all pain. But now I can tell a difference between muscle spasms and the pain around the port.

So I asked Mr. Rosey last night, "Since I have a muscle relaxer script for my back, do you think it would help with these muscle spasms too?"

He thought it should. His specific answer was, "The pill doesn't know it's prescribed for back spasms and you're taking it for the shoulder."  Well duh, that's what happens being married to a pharmacy tech.   So I took the muscle relaxer.  That helped ...a lot.

I'm trying to small things around the house today. Dishes, for starters. Picking up the Sunday paper for another. But I'm sitting to rest after each chore.

I also need to set timers for 2 hours to remind myself to pee. I have to train myself to pee (during chemo) every 2 hours whether I feel like it or not... it keeps the chemo from burning the bladder lining.   hissss...sounds painful.

I'm starting to get nervous/ anxious. Not sure what to expect from chemo. But I'm worried about that bone shot I'm to get the next day. They said it WILL cause bone pain, we just dont know to what degree. :( So I'm stewing over it.

In those first two years after I fell and the nerves in the legs were dying....I was in so much nerve pain. There was little to be done about it. I would lie writhing on my bed and just sob from the pain. I keep asking God...we aren't going back there are we? The nurse said they will medicate for the bone pain if it gets intense. sigh. I just don't want pain at all.

But I'm impatient to GET ON WITH IT!  It's been diagnosed, decided and scheduled.  I'm tired of limbo.  I can't get THROUGH this until I START this.  augh.

The only Good Impatience


I prayed for you every day that I saw my bracelet on.  I am glad that the IB is working for you.   I'm still praying Rosie.  I'm so grateful that you have so many ladies praying for you.   Storming the gates of heaven for you!  (((((Tina))))

Beth: Continuing prayers for you, friend. Thank you for your faithful updates. Love you!

Wednesday, November 14, 2012

Rink Ribbons ~ Rosey and the 6 # Port

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.

The chemo class is done, the port surgery is over, I've seen the radiation doctor.

I have been kind of quiet today and my pain is a lot better.  I still need pain meds but I'm staying controlled.  I'm not hugging the ice pack today... AND I got my own shower this morning.... And dressed by myself.  

So yeah... I'm doing a lot better.

I've been thinking about the radiation oncologist visit yesterday and how wonderful he was. He opened my scans on his computer and showed them to us. He showed me where I could have positive lymph nodes but that I did not. The technology is amazing. He could look inside my body as slices or as a tunnel going down through my head through the center of the neck down the chest and abdomen. Pretty cool. He was so gentle and encouraging. I was in so much pain at the visit (post port surgery) but I did feel blessed.

No one generally goes into cancer treatment with
 a list of doctors to use. 

You kind of have to rely on God to provide the best for you. Even the young high school student surgeon was pleasant. But my oncologist has been a blessing. KJ is fond of saying I'm being cared for by Jesus, Mary and Joseph. Dr. Joe's wife Mary - also an oncologist, had breast cancer herself last year. So they know the cancer from the professional AND the personal side.

Mr. Rosey's needle came out yesterday morning. So I had to pull it out. It was a little close to home for me. But my needle won't stay in for 4 days like his. Mine comes out right after chemo is over. But I'm feeling a little chicken about the needle thing. I'm going to use his cream AND the freezey spray that they use.

I felt like a wienie this morning. I had been taking the pain med around the clock and feeling better. Mr. Rosey's Nurse commented that I should be able to withdraw off that. So I skipped the next dose when I took my nap today.  I woke up feeling unable to move. He fussed at me.....this nurse is a wonderful friend but she is one of those athletic, outdoorsey people who thinks a "20 mile hike and camp weekend is a good time" kind of woman. She's tougher than I am.  Mr. Rosey told me "until she has surgery and a port put in...I'm not to listen to her over what my body tells me I need." he he he.  She means well. 

Maryland Crab:
Oh, Rosey, I'm in just such a positive, great mood for you.  I hate when people say this, but sometimes godincidences just line up as a way to let you know God is all over this situation.  I was up at 3am praying for you (guess that was 2am your time)  I just couldn't sleep, then we got some good news that tickled me and just made me feel warm and fuzzy that God is in on this situation.  Even if we don't like it in the first place.  I know, easy for me to say, but sometimes you may need outsiders to see the signs.

fragrantroses wrote:

"until she has surgery and a port put in...I'm not to listen to her over what my body tells me I need."   he he he.
You are no weenie. And definitely listen to your own body over what anyone says. I know some people can take 2 Vicodin ES and that is what I had prescribed sometime or other during my health issues and I couldn't even tolerate 1/2 of one of those things b/c my tummy got all nauseated (and yes, I took with food) but the icky feeling was worse than the pain.

And I've been praying for you sweet Rosey and I hope that your port healing continues to go well. I'm so glad that is over. I wish it hadn't been a 1 pm surgery. That NPO stuff is tough and with your diabetes,.... welll..... it's done and I won't fuss about it. You're not fussing about it!

Anyway... love you girl!

Ack. This is an urgent message! They gave me a 6 lb port! I checked my weight and I'm 6 lb heavier than I was on Thurs! hack. cough. sputter.

It has to be the port!

I haven't been able to exercise yet. But I know it's got nothing to do with the ice cream I have had. Everyone knows that ice cream is an essential part of healing after any kind of surgery. I mean we bribe kids with it....After you wake get to have ice cream! It's in my discharge papers...

pain meds as needed, activity as tolerated, ice cream as necessary for recovery. 

So you see. The only explanation is that it's a heavy port! That's my story and I'm sticking to it.

Maryland Crab:
You probably had on 20 lb shoes as well. Given how you're about to feel - I say just let go the weight loss right now.  Eat as well as you can, but give yourself a break.

Well I'm worn out. Mr. Rosey had to go into the office to place an order. So I went with him. We wanted to visit the Ashley furniture showroom to look at recliners. And it seemed like a good time.  I must be healing somewhat as there were bumps that made me wince, but I wasn't sucking in my teeth like I did last Friday. I did find a recliner that was very comfy...cushy and the mechanism was easy to reach to open and close. I figured that if one was a struggle to open NOW...that I would be flopping like a fish this time next week. So I tried them out looking for easy opens and closes.

Then he dropped me off in Sams to cruise in a cart.  But I need to speak to the dietician counselor before buying any foods for me. I have all these people telling me to eat cherries.....blueberries...

The oncologists tell me NO suppliments during chemo or radiation. The theory is that the natural vitamins and minerals occuring in food are fine. But not to overload on say....Vit E capsules. The suppliments toughen the cell walls so that the chemo and radiation can't work. So while I need good nutrition...I'm asking how much of a good thing is to much of a good thing?

He he he...gonna share a laugh. I sent Amy a text message with a photo of my port incision.

She sent back a message that she was glad I had not had a hemorrhoid surgery. 

bwa ha ha ha....Mr. R and I had a big lol over her response.

I didn't even know ports were inside or outside.  I'm sure yours is totally different than a line they put in for liquid food, but I think it is so amazing and a total blessing they can skip those veins and go right into the body for your chemo.  

My portacath is totally inside the body. They threaded a line into my big heart vein. Then the port is stitched to a muscle to hold it in place. Well its supposed to be. I think mine is but KJ's is not. You can move his around. I haven't tried to move mine, as it's so sore it has to be nailed down in there. Then skin is sewn shut over the whole apparatus. I can text you a photo of the incision if you'd like. lol As Amy noted - at least it wasn't hemorrhoid surgery. snicker (photo above)

Maryland Crab:
Well thank heaven you have a sense of humor.  I know it's all hard core serious stuff, but if you can't find a giggle here and there....

Rosey, I think it is wonderful that you have such caring ppl on your side. And you made me laugh with the whole ice cream thing. I love your sense of humor! You blessed me today

Had to laugh at Amy's comment. OMW!!! Laughter is good medicine! Get plenty of it Rosey!!

It's so cool to see God's hand in all of this. He knows your every need and fear and I love hearing about how He's meeting them. Blessing you with such wonderful doctors. You are in the hands of Jesus. He will carry you.

My dad was a huge believer in the fact that ice cream cures anything.  Anytime one of us kids didn't feel good he'd tell us to eat ice cream. Mom 'bout had a fit.  My dad is a wise old eat up girlie!!! 

I am curious as to how it looks.  I'm thinking it looks like Kathy's and it still doesn't make any sense to me, because it doesn't look like it is there.  Maybe hers is a few weeks healed and that is what it is to look like.  Still totally amazing, makes me grateful we live in this day and age they can do things like this.  Thinks like this that is gonna keep you around for many years to come.  

Well actually the whole cancer treatment thing is amazing us. Dad's cancer was 20 years ago. Mom's was 13 years ago. I remember mom's radiation as a horrible experience. By her last week she had these huge weeping open blisters and the doctor overseeing her was happy. He said that was meant they had burned out the bad stuff. My dear radiation oncologist had a look of horror on his face when I told him that. He said he understood why radiation scares me more than chemo. Literally mom laid on a recliner with no shirt on, her blistered breast exposed to air. She whimpered when we walked by because just the air currents hitting her skin hurt. K's impression was that MY doctor would never let get things get so crispy. But he said our machines are so much more progressed now.  It can pinpoint an area of radiation down to an inch leaving the rest of the breast untouched. Now if I have to have radiation my skin is what they will be radiating. But he kept repeating that radiation is different now.

When dad had chemo 20 years ago he had some nausea but mostly his issue was diarrhea. Now they have these protocols for nausea and for diarrhea, and mouth sores and finger nails. Things daddy suffered through they will be soothing me through.

I told KJ that the American Cancer Society deserved more of our money - combined federal campaign. Because I can easily see they have put funds into research that has made cancer an easier illness to cope with.

Cancer is easier when you have the RIGHT people in place.

Friday, November 9, 2012

Five Minute Friday~Quiet

We write for five minutes flat. All on the same prompt that are posted at 1 minute past midnight EST every Friday.

No extreme editing; no worrying about perfect grammar, font, or punctuation.

Unscripted. Unedited. Real.

It started because I’d been thinking about writing and how often our perfectionism gets in the way of our words. And I figured, why not take 5 minutes and see what comes out: not a perfect post, not a profound post, just five minutes of focused writing.

So now on Fridays a group of people who love to throw caution to the wind and just write without worrying if it’s just right gather to share what five minutes buys them. Just five minutes.


It lays upon my home like a somber blanket, muffling sounds of life and joy.  I glare at my aquarium as even the cascade of the filtered water feels loud and out of place in this home.

It is not a quiet of peace.  It not the quietness of a soothed spirit.

It is the silence of the empty nest.
There are not hoots of laughter, no chortles of delight.  There's not any rhythm of life.

It is lonely.  Forgotten. Unnecessary.

I wish I could hug those impatient young moms at the grocers and explain to them - seriously - how quickly the sounds of their life will silence down to this quiet.  The total lack of sound, beyond your own breath.  It's hard to find joy, without the circle of family distracting you with their noise.  The quiet is deafening.

And this totally depressing, discouraging and defeated description is why we start looking for grandchildren!  So once again the quiet of our home is shattered by a child's squeal, the obnoxious happiness of a push popper that makes our teeth itch with irritation.  There's new clutter surround the perfection of our sterile lives.  We love all the textures, smells and toys.   The cuddles and stories, there is abject joy that abounds as we look into the young faces of the future.

The sounds of laughter and play surround so completely that we count the hours until the grand-babies go home and we are once again cocooned within our "quiet."  But now it is a comforting quiet because it's not permanent.  We can rest in this because we know another play date with grandma is coming quickly.

My son, "Little Man" around a year of age...playing with grandma and grandpa

Thursday, November 8, 2012

Pink Ribbons - Chemo Class

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.

I actually wrote this after my first chemo treatment, but placed it here on the blog for continuity.

I am finding that a lot of people aren't familiar with chemo or the effects on a person. As some said...they thought it was mostly nausea. Ironically the nausea is a side effect most easily controlled. I do have some kind of nausea...the stomach clamps down and just hurts.

So welcome to chemo class.

I'm to be given two drugs for breast cancer...Cytoxin and Taxotere.
The common effects are as follows....

Nausea and vomiting. But they give medications to control that. Before I'm even given the chemo...they start with an iv med called Aloxi. It is an anti-emetic which means it's for nausea and vomiting. This wonder drug stays in your blood for FIVE days! I could definitely tell as it wore off. My actual nausea is under control.

The second effect is loss of appetite. I got that big time. Even when I do manage eat a little, seriously 2 - 3 bites and the stomach cramping starts and I have to quit. I have lost 12 lbs in a week. I know a good deal was water because I was retaining fluids like a sow. My cankles are now gone.

Next on the list is hair and nail loss. Losing your hair seems to be the classic effect of chemo, something everyone expects and notices.    It's nearly the first question asked when you hear "chemo"..."Will I lose my hair?  The worst thing about losing your hair is that you suddenly LOOK ill and people who don't know you start treating you like you are dying.   The other thing I notice is my hair insulated my head more than I ever knew.  I am freezing....I wear caps all day and night time too because my head just feels too cold for comfort.   Many people don't like using wigs and I admit I have a hard time keeping my wig in one place.  It slides all over, so I leaned more toward hats and scarves.

Red Wig from the American Cancer Society
Blond wig from the American Cancer Society
nearly my real hair color

Loved this pink hat purchased from the ACS,
along with a curly blonde "hair halo" from them
as well.
Newsboy's cap purchased from ACS
also a CLASSIC example of 'roid rash.  Even my
eyelids burned from the red rash.

Head Wrap TAUGHT to me by the ACS,
Scarf was gift from my mom.

Nails - They recommend using nail hardener and I have been.  (They did not tell me this effect lasted months after your chemo.  I used nail hardeners until the last week of my chemo.  Then in Dec. *2 months later* I noticed one afternoon that my fingertips were tender.  I pulled off my gloves -I'd been outside in the cold - and discovered all but one nail had lifted over halfway back from the free edge.  This made the fingers very tender and the nails very fragile.  I had to cut them back as far as I could to prevent them snagging on fabrics and tearing off.  But I learned too far back was painful as well.  There is a paper thin lining under the nail that I inadvertently clipped.  I howled (it hurt) and bled like I'd cut the finger nail off.  So to prevent your nails from lifting...continue to use nail hardeners at least 3 months and preferably 6 months after your chemo has completed.)

My nails the last week of chemo...the only part of my body
at that point not suffering.  Nail hardener polishes were
mailed to me by my WOW friends from around the country.

Next is bladder irritation. I have to drink fluids like a horse to keep that from happening.  They had me so afraid of this, that I drank about 125 oz. of water daily.

Next is stopping of menstrual cycles. That may take more than one chemo cycle. Frankly I'm looking forward to that effect. Well except for the hot flashes...(In hind sight I can tell you that Aunt Flo was tougher than chemo.  Although I was told chemo would stop did not for me.  Lupron injections did and the hot flashes WERE intense.)

Then the lovely sore mouth or throat called stomatitis. It can actually happen anywhere along the digestive system. But I swish and spit a saline solution every 4 hours to keep it from happening.

Then next you have the risk of an allergic reaction. Taxotere is famous for causing it. So that's why they add steroids to the chemo AND I have to take dexamethasone the day before the day and after chemo.

Chemo also causes fluid retention.  This is another reason you are given causes you to PEE like a cow in the field. You will believe you have just removed every ounce of fluid IN your body only to realize about 20 minutes later that your bladder is full again.  Your skin, hair, nails and mucous membranes however will be dry, cracked and bleeding.  It can cause diarrhea and I can attest that yes sir it does. :(

Chemo can give you a rash. I haven't gotten one this time at least. I developed intense red, burning rashes from the steroids taken to prevent the chemo rash.  Go figure.

Chemo can cause numbness in the hands and feet. I have had something like that. Kind of like carpel tunnel syndrome.  The more chemo you get, the more possible this effect.  (I did not notice this to be a problem until after my third dose.  It lasted about 6 months...mainly in my toes and my right thumb.  That was irritating.  A sore thumb might stick out but so does a numb thumb.  I lost count how many times I smashed it against something.)

Then there's fatigue. They said it would be like early morning sickness. And early on I think it was.  Again, this is a cumulative effect, meaning it intensifies after each dose.  (By the 4th dose, I felt like a sloth.  Simply unable to move.  It was way more intense than morning sickness.  I had a lot of soups because I was just too tired to chew food.)

Then there's the muscle pain. Only 20% of people on CT will develop muscle pain. I won that lottery. Doc gave me percocet and  with a lot of sleep it helped me get through the pain.   It was singly the hardest thing for me to cope with during chemo...the constant aching and throbbing of muscles and joints. (I don't know this is proven scientifically...but since my chemo I notice intense muscle and bone pain in cold, damp weather.  It seems that chemo sensitized my bones and muscles and they always react to the damp with pain.)

Late in the first week you have low blood counts. As red blood cells diminish you feel a special kind a fatigue. It's like a weary to the bone kind of fatigue and you find yourself puffing just getting up to go to a bathroom. White blood cells and platelets go down too. Basically your bone marrow has stopped working.

Because of the low blood count ....for those at risk they give us an injection called Neulasta. The Neulasta forces the bone marrow to work like a little sweat shop to create white blood cells. That medicine causes bone pain because of the sweat shop effect. It will help protect me from infection but it will hurt as well.   (I will share about the Neulasta injections in a upcoming post.)

Chemo is more than just vomiting and nausea.

So what did I learn in Chemo Class?

Fighting cancer with chemo SUCKS!

Friday, November 2, 2012

Chasing Sleep

Tonight, I sit in a quiet room and my jaw comes nearly undone with yawn that unhinges me.  I am sleepy.  To some of you in perpetual sleepiness this may seem mundane, but I have found how joyful it is to be sleepy.  To get sleep, zzz's or shut eye, it is a blessing.

The first week of August something happened inside my head (Mr. Rosey tells me that is a rare occurrence of any sort).  I lost the ability to get sleepy.  I would dress for bed, lay down and my brain would take off to the races.  I made lists, counted those cute Serta sheep, quoted Scripture, sang, tried to do long division (gave up on that), I planned menus and grocery lists...and eventually I would get mad.

I would get up and find myself doing dishes, shampooing carpet, or just reading at 2 am, . 

Sleep was ever so elusive and fleeting.  Sometimes I would be exhausted and tumble into bed, falling into an exhausted heap and drift off into nothingness.  But then awaken in a startle anywhere between 45 minutes to 2 hours later.  A good night of sleep became 5 hours.  I wasn't functioning on that amount.  Worse, I experienced the occasional day where I slept 2 hours over a 48 hour time frame.

I lost my sparkle.

My diva was drowning in stupefied stupidity.  

By the middle of October, I was dragging through the days in endless monotony.  I was fighting other battles as well.  I hurt all over, my blood glucose levels were going through the roof and I required nearly twice the insulin.  Despite the high glucose, I was starving and eating frequently...and gaining weight as well.  Every movement seemed to require superhuman effort.  I became convinced I'd contracted some wretched, horribly debilitating disease over the internet.

I came face to face with the fact that the human body not only needs sleep, it is a necessity.

I tried the Melatonin, benedryl, chamomile tea.  I tried all three together.  I tried napping and not napping.  I tried hot showers and still my pillows sat lonely.  I sent a desperate email to my doctor, who kindly faxed a sleeping aid to the pharmacy.  I followed the directions and I slept for 9 hours!

I was dancing through the hallway.  Yes!  I found an answer.  I took it the next night and still slept, but when the sun rose the next day, Rosey did not.  I got up, staggered to the family room, bouncing off corners on the way and fell onto the couch.

I sat...staring at the fish tank.  
That was all I accomplished.  

I have no memory of how I passed the day, apparently sitting for 6 hours staring at angelfish.  Mr. Rosey came home and sometime after his arrival I realized the incessant buzzing I heard was him.  He had been talking.  I turned my bleary, bloodshot eyes toward him and asked "huh?"  

"Do you have something planned for dinner," he asked me.

I replied again, "huh?"

Mr. Rosey made me see the doctor.  I left with another script in my weary hands with great hopes.  Frankly, I was skeptical but willing to try.  So I took the pill, and an hour later began to yawn.  I wasn't feeling sleepy, but gargantuan yawns threatened to overtake my face.  So I laid down.

I woke sometime in the wee hours of the morning realizing I had been asleep.  At first the days were a little challenging but for a week, night after night I was going to bed and falling asleep like normal people.  I'm pretty certain I heard angelic chores rejoicing over my sleep.

It had positive results.  I began to focus.  I began to move.  I found myself able to work on a chore and actually complete it.  I noticed my blood sugar levels were falling, and my hunger was lessening.  The aches and pains were diminishing and after 3 days of deep sleep I awoke with no pain.  I have slept nightly for 7 days.  I'm feeling better.

Yesterday, the Diva woke up.  

I threw a tantrum while trying to style my hair for an appointment.  Rosey stood up within me and demanded that I go get my hair cut.  So after my doctor appointment, I went for a hair appointment.  I was very pleased with this new hair dresser and when I left...I'm pretty sure I felt a glimmer of a sparkle.

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