If this is your first visit to my blog, you might want to start with my first entry, "How I got here - the short version".

Friday, November 30, 2012

Greetings from la la land

Oh, cyclobenzaprine, what magical properties you have.
Even the littlest spasms of muscle be gone!
And sleep I in deepest slumber, all the day and night long.

If I'm attempting poetry, I must be high on something. :-) But, truly, this stuff is great for what ails me. Problem is, I just can't keep my eyes open.

Paul reminds me that today is typically the worst day in the chemo cycle for nausea, so if I've made it through today nausea-free, then I've skirted that particular side effect again. Whew! I'll take it.

More later, when I'm in a less altered state.


Thursday, November 29, 2012

Next time, someone else cleans up that mess

Last night, I went to bed fairly early, for me. I had a lovely night's sleep and awoke before my alarm, ready to greet Paul, as he finished up his morning workout on the elliptical. I sat in my usual easy chair, checked my email on my iPad...the usual routine.

A few minutes later, I can smell the coffee Paul had started brewing, and I ventured into the kitchen to pour a cup. On the way, I'm distracted by an aging vase of flowers and decide it's time to throw them out, so I take them into the kitchen to discard them. I break the stems and stuff them into the trash can, as a few stray petals fall to the floor. I bend over to pick up those uncooperative flower bits, and SNAP...my back goes out. Of all the ^}>€~<{*# things to happen!

Next time the flowers die alone and desperate, while someone else cleans up that mess. 

Regarding my chemo recuperation, all continues well. I slept most of the day, but that was due to the muscle relaxant my oncologist said I could take for my back. Probably for the best. 


Wednesday, November 28, 2012

So far, so good

Lots of napping today, but I did manage to get the boys' birthday party planned. No other uncomfortable side effects yet, and my head has stopped itching!

I forgot to mention this yesterday, but when I talked to my oncologist, he confirmed that I will have a scan scheduled after the third chemo next month to check on the effectiveness of the treatments so far. He also told me his sister was recently diagnosed with breast cancer. For a few poignant moments, we forgot the doctor-patient relationship and simply related as human beings. A real gift.

Tuesday, November 27, 2012

And I feel fine

My second chemo went very well today. This time it only took seven hours, instead of eight. So far, so good with the side effects. I'm nodding off between sentences, so I'm heading to bed. More tomorrow...or maybe later tonight when the steroids take over.

Monday, November 26, 2012

Queen for a day

In a bizarre sort of way, I'm looking forward to my next chemo session tomorrow morning. It's not quite a day at the spa, but it is a day focused on me. I can sit in my comfy chair and watch tv or surf the net or read or nap, while people bring me things.

I do, of course, wonder how things are going to go. Each progressive session has the possibility of exacerbated side effects. But, I also have faith that I'll have the tools to get through what comes my way.

I visited my dermatologist today, and she has prescribed a steroid foam for my itchy head. The pharmacy had to order it, so I won't be able to try it until tomorrow. I'm looking forward to that great big bolus of Benadryl they'll drip into me in the morning. Better living through pharmacology.

As a treat for myself, today I bought a few more soft jersey caps for my head, and then the coup de grace, I went to Charming Charlie, a massive accessories store, and bought all sorts of big out-of-character earrings, scarves, and brooches for my new look. If I could have figured out how to use it, I would have bought a tiara too.

Now, I must go to bed. I need my beauty sleep for tomorrow.


P.S.

I had another blood draw this morning, but the "Master" was nowhere to be found. Still was a pretty good stick...but not nearly as entertaining.


Sunday, November 25, 2012

Can you please connect me to the complaints department?

All day yesterday and this morning, I've been thinking about what I would write for this post, and profound words escape me. That's because all I can think about is my itchy shedding head. My wig itches, my hat itches, even uncovered, my head just plain itches!  I can't wait to become totally bald.

However, I remind myself that loosing my hair is evidence that the chemo is doing what it is supposed to do, attacking and destroying fast growing cells. Dying hair cells are merely collateral damage from the real battle within, zapping the DNA of those fast growing cancer cells.

But right now, I just feel like complaining.

Friday, November 23, 2012

Briefly, I had a mohawk

A weight has been lifted from my shoulders, literally. My 19 year-old niece Bailey shaved my head this morning. I can't believe how great it feels!  So liberating. Actually, it's more of a crew cut than a shave, and I have to admit, I kinda like the look.

The new me

Here I am with Bailey.
My niece and head shaver extraordinaire

And here I am with with my wig.

The other new me
 Sometimes, the most unexpected, loveliest moments come your way and you don't realize how special they are until they pass. This morning as I'm about to leave my mother's house so I could meet my niece at 9:00 for my head shaving, I noticed Paul putting on his shoes. "You coming with me?" I asked. "Yep. Showing my support," he answered.

We arrive at my brother's house, where my English friend Debbie is also staying. They'd prepared a chair for me in the kitchen. I thought we'd do it outside so we wouldn't have to worry where the hair went. "Oh no," says my sister-in-law Sha, "it's too cold out there." Sha has a beautiful home about which she is rightfully particular.  To have my hair scattered all over her kitchen is a great privilege.

As I looked around the room, Paul, my brother Kenneth, Sha and Debbie surrounded me as Bailey began the first cuts. They were even taking video and pictures, documenting this particular moment in my journey, as chunks of my hair began hitting the floor. "Give her a Mohawk first," Paul joked. Bailey complied, briefly.

When completed, Sha exclaims, "Wow, you've got a nice round head.  I always thought that was just all your hair."  She hands me a mirror for my first look.  Amazing, I think. I like it.

Only later today, did it dawn on me that in my life I will never again have so momentous a haircut, in a room full of such encouragement and love. In my near baldness, I am transformed...uplifted...free!



Thursday, November 22, 2012

Happy Thanksgiving

Every day, but especially today, I am thankful for many things. At the top of the list are my family, especially my dear husband Paul, and friends who are giving me undying support and encouragement through this battle. I can't describe the lift I get when I receive your phone calls, cards, meals, emails, texts, and views of this blog. I get such a charge out of watching my page views climb. Y'all sure know how to make a girl feel loved.

I am grateful that my mother remembered that I love cake with caramel frosting. There was one waiting for my arrival yesterday. It may not be made with the same élan as her cakes in the past, but eating it will be no less sweet.

I am thankful that my almost 12 year-old boys will still give me hugs and kisses and occasionally still hold my hand. They are growing into such wonderful young men, and I am proud to be their mom.

I am grateful for my team of doctors, nurses, technicians, and other support staff who are taking such good care of me. And, I'm grateful for the ten years I worked in the medical environment and my basic working knowledge of the science but also the delivery systems of health care. A good patient is an informed patient. I'm thankful that my husband has a job with excellent medical insurance that gives me access to treatments I need.

I'm even thankful for this journey. Slowing down and taking stock of every single day has given me great perspective. It's a very contemplative time for me, and I'm grateful to be able to write about it.

I am thankful for my niece Bailey, who has offered to shave my head for me so I won't have to deal with all this hair falling out everywhere. ;-)

And now, I've got to go. There's cranberry sauce and pumpkin pie and turkey and dressing and gravy to be made.

Happy Thanksgiving, everybody!

Wednesday, November 21, 2012

The bald head cometh

I think I could stand in front of my sink and gently coax out every single hair on my head. Two weeks out from my first chemo treatment...I've always been an overachiever.

I wore my wig yesterday for a bit around the house, just getting used to the feel of it. Paul is tickled with the fact that it's from the Rachel Welch line, since she has been his heart throb for many, many years.  The boys didn't even notice it wasn't my real hair. It is cute, and I do like it a lot.

Truly, my main concern about my hair loss isn't my own vanity. I'm worried about worrying my mom. Today, we head to the farm for Thanksgiving, and I'll be spending a few days with her. Mom is 81 now, and dementia is setting in. She struggles with her short term memory, and she doesn't quite seem to have processed what's going on with me. To be fair, my brother and I haven't told her all the details of my illness because we know she will have limited ability to understand. Hair loss, though, I think she'll understand, and I'm concerned about her ability to cope with a more concrete idea of what I'm going through.

This is the first time in this journey that I've not quite felt up to the task at hand, but once again I pray, give me strength and give me peace.

On a very positive note, my dear friend Debbie arrived yesterday from London. For those of you who don't know the story, Debbie and I became pen pals when we were ten through an ad I found in the back of the National Geograpic kids' magazine. As adults, we've been able to meet numerous times, and while I was living in France, we'd get together several times a year. This is the first time I've seen her since we moved back, so it will be wonderful to spend time with her. She loves our American Thanksgiving and is a great comfort to me just by being here.

So, there still are blessings for which to be thankful.

Monday, November 19, 2012

The peach-eyed monster

Can I admit that I find myself somewhat envious of the whole breast cancer advocacy machine? Professional athletes wearing pink the entire month of October. The Race for the Cure. Provocative bumper stickers. Don Draper himself couldn't have come up with a more compelling campaign.

Try Googling 'awareness ribbons' sometime. You'll be astounded at the possible colors and designs, and the endless causes they represent. Among other things, teal represents gynecological cancers, in general, and ovarian cancer, more specifically. Teal combined with white stands for cervical cancer. Peach is for uterine cancer.

Everyone's heard of Susan G. Komen for the Cure, but have you ever heard of an equivalent organization for  GYN cancers?  There isn't one...yet. However, one is in the works sponsored by the gynecological oncology practice I go to in Atlanta and one of their former patients. Here's what the logo will look like: www.forthewomenwelove.org. Nice, isn't it?

So, perhaps there's hope that Ben Roethlisberger or Derek Jeter might wear teal socks in the future. Who knows, maybe even peach.



Sunday, November 18, 2012

Happy birthday to me

On the day I turned 21, I somehow found myself sitting alone in the locker room of my college gym, reflecting on my momentous birthday, and I suddenly burst into tears. I'm 21 years-old, I thought, and I've never done anything...and I never will. It was one of those self-absorbed revelations only a college kid can have. 

Here I sit 27 years later, at what could certainly be considered a momentous time in my life, and feel...at peace. I've backpacked through Zimbabwe. I've worked with truly gifted people. I married an amazing man. We are raising twin boys, our miracle babies, who both endlessly challenge and entertain us. Together, the four of us made a life for three years in France and traveled to more countries than we ever thought we would. I even know how to tell someone off in a language other than English. 

When Paul and I first got married, we used to talk about our five-year plan, ten-year plan. Some goals we met. Some we didn't. Unexpected disappointments were matched with fortuitous opportunities. Regardless, Paul has this endearing habit of grabbing my hand, grinning at me and saying, "We win."

I don't know what the next year holds for me, but do any of us, really?  We could all still be here in twenty years...or not. I'm having a great life and I am blessed to be sharing it with wonderful people. I hope to be here on this earth for another 48 years, but even if I'm not, I win. 

Happy Birthday to me. 

Friday, November 16, 2012

Taking the night off

Paul is back from Europe. The boys are spending the night at a friend's house. My bloodwork results are good. I'm taking the night off from blogging. ;-)

Thursday, November 15, 2012

Master phlebotomist

First, just let me say this: best.needlestick.ever.

The kid that drew my blood today was amazing! I have no veins. Never have. The only visible ones I have are on the back of my hands, and those are pretty painful. Even then, the phlebotomist often has to dig around as that vein tries to weave and bob its way from the needle.

Today, however, I was transported by this 20-something into a land of phlebotomic (is that a word?) ecstasy. "Your veins are like butter," he whispered in my ear, as he oh-so-deftly slipped the needle into my arm.

There was the barest sensation of a prick and ten seconds later he withdrew the needle with a vial full of my blood.

"You are the master," I tell him. "Y'all hear that," he calls to his co-workers, "I am the Master Phlebotomist!" An older woman colleague yelled back, "Marcus, you better stop with that foolishness or that lady's gonna fall out!"

I breathlessly ask, "when can I see you again?" Alas, he doesn't work regular hours, so I can only hope our star crossed paths will cross again. It's a shame. I'll need at least two of these blood draws each treatment cycle. Sigh.

Wednesday, November 14, 2012

The latest fashion

I promise, this is the last picture I'll post of myself for a while, but as I'm becoming aquainted with the fashion practicalities of chemo, I realized there was another venue to check out: the surgical face mask.

My latest fashion accessory
 
Tomorrow, I'll be at the half-way mark in my current treatment cycle. This means my immune system is at its most fragile point, so my outing for the day is to have my blood drawn in a laboratory...in a hospital...where there are lots of sick people.  Catch the irony?
 
My blood analysis will tell my doctors if my immune system is holding up under the pressures of chemo. They'll check my white blood cells, platelets, and hemoglobin.  If any of these are too low, I'll be given some sort of treatment to help my system recover so that I'll be healthy enough at the end of this cycle to begin another one.  It's a delicate balancing act, this business of poisoning your body and then recovering before you poison it again.
 
In the morning, my sassy new hairdo, my surgical mask, and I will set off to face the germy world.
 
I hear that you can find really cute masks on Amazon.  After I post this, I'm going to have a look.
 
 
 
 

Tuesday, November 13, 2012

My chemo 'do

Further preparations for the impending hair loss underway.  Today, I went for my chemo haircut.  You'll understand what I mean in a jiff.

Here's a picture of me from yesterday:


Before

And here is a picture of me from today:

After
 
 
What's the difference?  My oh-so-chic scarf, you say?  Well, yes, but more to the point at hand...less hair to clean from the shower drain in a few weeks.  Henceforth, this coif shall be known as my chemo 'do.  I am nothing if not practical. 
 
For those of you particularly perceptive folks...did you notice the small horizontal scar on my upper left chest in the before picture?  This is the incision point for the port an interventional radiologist (didn't even know there was such a person before now) inserted to facilitate the chemo infusion.  There's a little titanium snap just under the surface of my skin that leads to tubing that arches into my subclavian vein (did I get that right, you doctors and nurses out there?). 
 
When I get chemotherapy, the nurse hooks a matching little snap doodad into the snap under my skin -- there's only a slight prick, like getting an inoculation -- and that exterior snap is connected to the tubing leading to the bags of medicine and saline that drip into me.  TMI?  Sorry...no...no I am not.

 
 


Monday, November 12, 2012

I bought a wig

There's something a little creepy about going into a wig shop. I think it's all those mannequin heads with their plastic expressions and over-applied cosmetics. (Wasn't there a Twilight Zone episode where a character gets forever stuck in a department store with a bunch of freaky mannequins?)

My oncologist tells me there's about an 85% chance that I'll loose my hair during the chemo process. It could start falling out as soon as next week. Since we're hoping to go home to the farm for Thanksgiving, it made sense to me to go with the odds and get the wig now.

And, God got it right when he made me a dark brunette. I tried a sultry auburn which made my skin way too sallow, a light brown that was the quintessence of 'dishwater blonde' (on me...not Ms. Bug-eyed-pouty-lips-disembodied-mannequin-head), and a blondes-have-more-fun job that might have worked if I'd done my face up street walker style this morning. Nope, I'll just take my natural color (minus the grey roots), thank you very much.

Another thing.  I have a big head in the wig fitting world.  None of the average size wigs fit me, and they didn't have a single large for me to try on just for size. And, the wig I chose only comes in average, so the owner of the shop is reworking it by hand to fit me. This is no surprise at all. Even my boys, born one month premature, had full-term sized heads. Their little bodies may have been in the delicate 15th percentile, but their mother's-sons heads, 100 per cent, baby.


Creepy mannequin heads

P.S.  Had a really good day today. Felt like myself again for the first time since chemo last week, with the exception of my hands developing an arthritic-type feel to them, not an unheard of side effect of taxol/carbo chemo.

Sunday, November 11, 2012

The wearing of the bracelet

This morning I woke up and took off the teal plastic solidarity bracelet I'd been wearing since I got it at my chemo session orientation last Tuesday morning. I half-heartedly listened to my active imagery CD. I choked down the handful of vitamins and other supplements I bought yesterday at the health food store. Today, I'm sick of thinking about having cancer.

Don't get me wrong. I'm no less resolved about my fight. Today, I just don't want to have to fight. I just want to feel like a normal person on a normal Sunday.

So, I took a walk, saw Paul off for his week-long trip to Europe, and...went back to bed. I had a gloriously decadent dreamless sleep, and when I woke up, I put my teal bracelet back on, got dressed, and took the boys and myself out for an early dinner.

Life goes on.



Saturday, November 10, 2012

Prayer bearer


Ladies and gentlemen, I present to you my very own prayer bearer. Sponsored by a program at nearby Cannon Methodist Church, two families, our friends the Gunns and the Heatons, gave me this bear. It comes with a special prayer:
Lord, may this be an instrument of Your peace. May this bear be a blessing to the person who receives it. May this bear bring hope to someone who has given up hope. May this bear bring peace to the person whose body and soul are hurting. May this bear bring the love of the people who had a part in making it. Through this bear may the person who receives it know God's love. Through this bear, may the person who receives it know that they are not alone. Through this bear may the person who receives it know that others are praying for them. As the person who receives this bear holds it, may they know that You also hold them in the palm of Your hand. Amen.  
Thank you Gunns and Heatons. I am touched. You're never too old to hold onto a teddy bear when you need comfort.
 


Friday, November 9, 2012

Quick note

Very tired and tummy upset a bit, but if this is as bad as it gets, I can certainly do this. Took another woozy pill, and I'm off to bed.

The phone calls and the emails and sign ups to bring us dinners keep rolling in. Thank you so very much!  Your support means the world to me, Paul, and the boys.

Thursday, November 8, 2012

The happy hour girls

Photo: Love from the Happy Hour Girls

Teal is the color ribbon for gynecological cancers.  Thank you, Andrea, for combining it with our old mommy playgroup Happy Hour bumper sticker.  I'm feeling the love.

Today was another fairly good day.  Just mostly tired and have no problems nodding off at most any given moment.  I'm feeling very much blessed.

Wednesday, November 7, 2012

Endorsement

Over five years ago, my heart just broke when our dear friends Barry and Patty and their four boys left Georgia for a job promotion in Texas.  Patty and I shared those crazy early years of motherhood together (she has twins too!), and Paul and Barry jointly coached their very first soccer team, a wiley group of four year-olds who either wanted to fight over the ball or just run up and down the field chasing their shadows.

Barry works for a major news outlet, and even though he was up most of the night covering election returns, he found time to write some words of support for me on Facebook this morning.  I was so entertained yet touched by them that I just have to share them here and make them a part of this legacy, even if many of you have enjoyed them on Facebook already. 
My line of work prevents me from publicly endorsing a candidate or campaign but now that the elections are over I can't sit quiet any longer. For the record, I wholeheartedly and unequivocally endorse the campaign of Beth Moore. Her opponent is cancer and I think we can all agree in nonpartisan harmony that cancer has done nothing good for this country -- or world, for that matter -- over the last...two, four, eight, 100-plus years. Beth, on the other hand, is one of funniest, most caring, righteous and down-right awesome people I know. If you think cancer should be defeated (even snuffed out in the dark of night by Navy SEALS) and believe in wonderful people like Beth Moore who make the world a better place, please "like" this posting and share it with your friends. Rock on, Beth!
 
(Yes, Barry, I asserted editorial license and corrected your typo.  I may never again get the chance to edit a professional journalist!)
 
As far as to how I'm feeling today, I'm taking it really easy.  One of the chemo meds has made my cheeks warm and red, a side effect I was told to expect.  Some light nausea set in this afternoon, and since it hasn't abated, I've just taken a woozy pill that will either make me not care that I'm feeling sick or will make me go to sleep.  Either way I'm golden.

Tuesday, November 6, 2012

First chemo, not so bad

I'm not writing much right now, because I still feel woozy from the Benadryl and anti nausea medications they gave me with my chemo. But, everything went well. The staff was phenomenal, and  I'm doing just fine.

Steroids are now a pretty common part of any chemo cocktail these days, and my nurse warned me that I'll likely be wanting to vacuum the entire house and clean all the windows come about 2:00 a.m., when the woozy meds wear off. Perhaps you'll get another entry then.

I'm going to go put my head down now.

'Twas the night before chemo

Everyone's in bed now but me, and I can't help but wonder how I'm going to be feeling this time tomorrow night. I'm assured by my doctors and nurses and even the Internet (can you imagine I've been Googling lots of things recently?) that medical science has come a long way in managing chemo side effects. Trying not to feel skeptical.

I've been overwhelmed today by all the responses I've received. I've heard from folks I haven't seen in years and even people I've never met. The offers of support and assistance have been amazing. I've been especially moved by the near insistence of a friend (thanks Lauren) to set up an online system to volunteer to bring a meal to me and my family anytime throughout my chemotherapy treatment. If you're interested, you can check it out here.  I'm humbling myself and getting schooled in how to accept help when it's offered.

Paul is going with me tomorrow.  The chemo nurse told me to expect to be there for six(!) hours. I haven't yet seen the new infusion center at St. Joseph's, but I was assured it's very nice, with a separate cable tv for each chair.

They better have WiFi.


Monday, November 5, 2012

How I got here - the short version

In late April of this year, I had a uterine biopsy that revealed hyperplasia, basically cells that looked suspicious. Some people call them pre-cancer.  Recommended treatment, hysterectomy. Pathology study during the hysterectomy (frozen section), confirmed at least stage 1 adenocarcinoma.

Complete post-operative pathology report upgraded me to stage II, because of slight spreading of the cancer into the upper part of the cervix but no spread to the lymph nodes. This is good news, I'm told. This kind of cancer is easily treatable.  Seven weeks of pelvic radiation, and you're practically cured...but we'll follow you closely for the next couple of years to be sure. Surveillance mode, one of my oncologists called it.

Three weeks ago, I had my first follow up PET scan. Truly, I didn't sweat it. Just what's required to confirm my postoperative, post radiation excellent bill of health. Except it didn't. A suspicious pre-existing nodule in my lungs, a favorite metastasis party spot for uterine cancer, lit up with the radioactive glucose solution injected into my veins. Cancer cells love glucose, so they lap it up.

A needle biopsy of the nodule confirmed what my oncologists (and I) already knew had to be true. I have metastatic uterine cancer, stage IV. As bad as it gets. Here I sit, feeling perfectly healthy, with stage IV uterine cancer cells tap dancing around my lungs. Chemotherapy (a cocktail of two medications referred to as carbo/taxol) begins Tuesday. I'll have a treatment every three weeks, for a total of six treatments. Then, we see what happens.

I start this blog for several reasons. I'm hoping it will be therapeutic for me as I navigate through this journey. It will give my family and friends a way to keep up with my progress, without me hounding them with emails, afraid I'm leaving someone unintentionally out of the loop. But, I mostly am doing this because, if I only have a short time left, I want to leave a legacy for Allen and Boyce, my 11 year-old twin boys, to know that their mom fought hard with great courage and had things she wanted to say.

So, I pray to the universe, give me strength and give me peace.