Returning to the Village of Neulasta

Remember back in the late '70 the TV series "Fantasy Island" with Ricardo Montelbain as Mr. Roarke (did you remember to roll your "R"s) and Herve Villechieze as Tattoo..."De plane, De plane." The visitors to the island would have their fantasies come true within the 44 minutes of the show (16 minutes were commercials).  So today, I am not returning to Fantasy Island for sure, the trip is 3 hours, with no commercials, this is reality TV...I don't have any fantasies in my idle mind.     I am going to the nasty Village of Neulasta, where the Marquis de Sade welcomes you, for "de shot, de shot".  What happened you asked?  Didn't I write that I was going to get to skip beatings by the villagers?  Well, not so fast. 

I did my homework, books, Google, Wiki, Breast Cancer Bulletin Boards.  When Mr. Onco Doctor's nurse mentioned on day 6 (crushing back labor, followed by massive drug doses) that they would not have to give me the Neulasta shot, but it could prolong the chemo cycles. That gave me plenty of time for research.  I found pretty quickly that prolonged cycles could mean up to 7 weeks between treatments.  Meaning that chemo would be upgraded to a 42 week cycle---don't think so!!   They could not be sure, I would get to drive up on day 21, have blood drawn, wait for the results to see if my numbers were strong enough, then I could have my treatment, or go home and come back on  days 28, 36, 42 or until my numbers were in range.  With gas hovering at $4.00 a gallon (Armada gets 16 MPG on a good day--and I am sooo cheap), and me wanting the control stick, no way was I going to trade in my sure 21 day cycle for a well, maybe 42 days cycle.  And feel worse.  At yesterday's Onco Dr. appointment, he gave me three options. Option  #1  Suck it up, take the shot (and beatings),  Option #2 take a less effective shot, in the same drug family that required daily trips for 3-7 days, with blood test every day---oooh, gas and control stick issues---or Option #3 take no shots or beatings - but in addition to the unknown cycle length, I would probably land in the hospital a couple of times with massive infections (septis made the list), and would feel really fatigued, and have to stay home lots---Those folks at MD Anderson really know how to pitch the shot, don't they.  Where do I sign up for Option #1?  

Before I signed on the dotted line, in blood--from my ratty looking chemo port, the Marquis de Sade (Onco Doctor) and I had to have what we call in our family "a come to Jesus meeting" regarding information dispensed by his nurses in the infusion clinic and the non-hole punched product information sheet that accompanied my last beating (Neulasta shot)  I stated quite firmly that his nurses indicated that I was to take no pain killers or NSAID, but could take Claritin for the pain---they wanted be to be awake and in pain in case my spleen decided to pop.    The Marquis was shocked, he had never heard of such a off label use for Claritin, and certainly didn't prescribe it for such. Further, I could take any pain relievers, starting four hours before and there after as long as I had no fever prior to taking them, including the more yummy narcotic drugs.    Excellent, your offices are 20 feet apart, you are all on the same team, but everyone has a different play book.  Hello, you are suppose to be #1, these little hiccups can cause a team to lose the Super Bowl...or at the very least drop the ball.    Heck, these are rookie mistakes that are worked out in the preseason, not now, mid-season. Since we all have the same play book now, I have decided to be my own quarterback, a la Peyton Manning---I will call my own drug plays for trips to the village.   So, with glazed drug filled eyes, I am going back to the Village of Neulasta today.  I took a Claritin just in case, have my yummy drugs in my purse incase we are gone longer than 2.5 hours, along with my thermometer. I have my ice packs, heating equipment and nausea meds waiting on the bedside table.  I will have the control stick this time---I am the windshield---but will probably be bug for the next day or two.    I am learning to be a little more demanding of my caregiving team---had them dial back the benedryl yesterday to pre-slobber stage, I could actual complete a sentence when I got home.  My numbers were excellent---that is why I am feeling so good...lets keep it that way, 4 days of pain every 21 days---24 days for entire treatment cycle---yeah, I can do that.  Prayers for the kindness of villagers, and that the pain killers taken when in pain are more effective than not taking them.  

Top 10 things I have learned about Chemotherapy

This is my top ten list, after my second chemo treatment.  Not to be confused with the Letterman Top Ten, where #10 is the funniest, followed by #6, #2 to get the last laugh, before giving you the totally lame #1.  Rather more like the Miss America pageant, top ten in no particular order.  These are just some reflections, ponderings and observations I have made.

1.  Some days you are the bug, and some days you are the windshield.  There will be days you feel like the bug (squashee), but pretend you are the windshield (squashor)---to yourself and everyone else. If you need to "go bug", do it, just hibernate for that day, then get back on the road with a clean windshield...and keep on truckin'.  Attitude really is everything...with or without cancer.

2.  I have forgotten how to clip my own toe nails---really, pedis are on the red marker list.  Not sure whether it is a sanitation issue with the various nail bars (Note: to MD Anderson, put in a clean/blessed mani/pedi bar in your huge facility, your female patients will love you for it) or whether a relaxing leg and foot massage can cause a rogue blood clot to dislodge, but I will be the one with bandaids on my toes for the foreseeable future.

3.  Your daily beauty routine is much shorter with no hair.  I see why men get ready so quickly.  I wish my leg hair would just get the message that it should just fall out.  Guess there is so much area to cover, it will take a couple of treatments to get all the way down stream.  My eyebrows are hanging in there, eyelash thinning, but still present and accounted for---these are makeup free zones, too.  My skin/face has never look better, chemo is the new chemical peel---just works from the inside out (kinda of a scorched earth thing)---another time saver when it comes to creams, lotions and expensive face goo. It is 15 minutes tops, and I am out the door.

4.  There is a special bond with others that have gone through cancer, regardless of type or sex.  It is a different kind of support....they know what to say, what to do, what to ask.  Surprisingly, a male friend said it best.  He told me that I would get thought this, that in a few years, the word or fear of cancer would not be something that I thought about everyday, and that life would be more precious, and that you would learn to enjoy every moment.  Thanks, Mikey.

5.  Radiologists should not be allowed to perform any procedure that requires stitches, particularly if it is visible with your clothes on.  After two surgical procedures with over 36 inches of stitches that aren't seen (and would not be ugly, if I was that kinda girl), to have the mantel decorated by the radiologist who installed my chemo port is a crime.  I look like I was in a bar knife fight---neck and mid pec-area, left side.  The port is like a bottle cap just under the skin, so there is always a faint bruised look, with lots of stitches. After some random chest nerve pains, around my heart area (mild panic when it first started, now I am use to the strangers in the night--or any other time), and the repeat nerve issues when "popping the top" on chemo day, they have determined that he planted the port on nerve endings.      Bleh! and my insurance said that I paid a lot for this...can I request a refund?  I will use my refund to  get rid of my turkey neck.  Good grief, the lack of big boobs and hair have made that the eye focus in the mirror.  Gobble, Gobble, ya'll.

6.  Stores (even Amazon) don't sell temporary tattoos any more...everyone must be getting the real thing these days.  Shows you how old and prudish I am.     In an effort to make light of my chemo port, I have visited the usual suspects---WalMart, Target, Walgreens, CVS, Sally's  looking for the tattoos that stick on and wipe off with baby oil....seems like only yesterday the racks were full of them.    The only thing that was available was Winnie the Pooh, Cars, and Tinkerbell.  It wasn't the look I was hoping for...  I was thinking a rose--or barb-wire.  Sally's Beauty referred me to Magic Needle, the big tat shop on 1960 in Atascocita....drove there, but just could not make myself go in.  (Bug/wienie moment)  I could just see them trying to upsell me a tat for my bald head, telling me that once my hair came back, no one would know.  I am figuring that while specifically not on the list, permanent tats would be likely a red marker item.

7.  Laughter is really the best medicine.  Whether a snicker, giggle or full blown belly laugh, I look for humor everywhere.  Kathy and my mom, Katy, (90 year old) send me a "happy" before every treatment or procedure.  This time it was a shoulder and back warming pillow, and a Sex with Cancer magazine....snicker, snicker, giggle, giggle.  Sent a quick email to both, acknowledging the pillow and giving my sister credit for the mag.  Mom called a little while later to claim credit for the mag...she stole it from the Doctor's office.  Can't decided which part made me laugh the hardest.  The Mag--Mom--or petty larceny.

8.  While everyone's journey is different, and like the drug commercials on TV, side effects may vary, chemo is not as bad as you imagine.  The stress of having chemo is probably worse than the actual treatment.

9.  Do not wear your wigs to cook in, crawfish boils, or around open flames.  It will spoil the look, or at the very least pick up cooking odors.  Good user tip.  Besides that wigs, can pinch the snot out of head and give you a headache, even when you are not cooking.  Of the two wig outings---Dominque is the fav---with most people telling me I should wear it all the time.
Either my friends think I should have a chronic headache, or my hair looked like crap before I started this journey.

10.  And finally, while the distance between MD Anderson/Woodlands and Kingwood/Atascocita and MD Anderson/Woodlands and Camp Allen, is roughly the same. Ed swears we have better drivers (read: faster) on this side of I-45.   There is something about spending the day and night before chemo with your grandson, Eli,  and a couple of licks from Cali, the grand-dog, that makes the medicine go down so much easier, even if it at 7:00 in the morning.

                                                    Eli in his University of Tenn. outfit

News flash:  Flamingo count 2 - wing salute!

Doodle Daisy

Did ya' miss me?  Did ya' wonder if I was out after midnight getting into trouble or hibernating?  Last week were days 13-19 in my 21 day chemo cycle.  It is when you have your most energy and feel your best!  So, I would go like a crazy wind up toy until the wind wore down (usually a dawn to dusk cycle), then fall in to my easy chair for the evening.  While in my easy chair, I had time to ponder the political news of the week....the Etch-a-sketch, seriously, if this is the best that 24/7 news media can do for a news story.  This is about as hard news as what the Kardashian family is doing.   Every editorial drawing, or picture in WSJ had Obama, Romney and the Etch-a-sketch.  Being that I have an idle mind during the evening, my mind started wandering...I remember the Etch-a-Sketch---it was a stone age, manual Ipad/IDraw that was popular when I was growing up.  Kathy and I (and even our children) had the toy, however, did not possess the artistic nor manual dexterity to create anything more than lines and a couple of mazes.  My favorite manual doodler was a daisy doodler.  There is a snazzier 2012 version that Crayola makes with a similar name, but it is just not the same.  The old daisy doodler had wheels and cogs on a etch-a-sketch style screen, but the pen (a pack of color pens, if I remember correctly) was up, and it made circles, and more importantly, flower petals.  You could create simple but perfect petaled flowers like a daisy or good crazy and do layer upon layer of petals and create a huge mum. Gosh, I liked making flowers, perfect flowers.  

Fast forward to my current situation.  If I were asked what kind of flower I would draw myself as with my daisy doodler, it would be a Gerber Daisy.  More complex than the regular daisy, or the black eyed susan wildflower, a little more colorful, interesting center with little short petals.  I think of myself as a single Gerber Daisy in a bud vase, with a circle of a few close friends, represented by each of my petals.  My busy week last week brought me in contact with many of my petals (friends). (Some got to see the "wig"---told me it looked great, even better than my real hair---note to self, find new stylist.    Others got to see my expanding collection of do-rags and scarves.)   I began to imagine them as daisy doodler flowers (told you, an idle mind can sooo run amuck)  There were mums, spider mums, roses, marigolds---each person represented some sort of flower, each different, each with different petals.  It was only when talking to my flowery friends---with comments like, "Paula sends her best, her ODK group is praying for you"--I know Paula B, Paula E, Paula W which one....had not even thought of them when making my doodle daisy flower.    Another flower friend chimed in, "Deb wants to get together for lunch next time she is here". And yet another, "Carol said...when she was doing chemo". Oops, a few more petals missing from my daisy.    I realized that if "no man is an island", then no women is a single flower in a vase.  She is part of a big bouquet of flowers, with petals of each of the individual flowers touching and overlapping.  In overlapping, the circle of who we touch and share becomes wider, the prayers, strength, pain and joys are multiplied.  So, I thank you for reminding me that I am but a flower in a huge arrangement, and together we make life and the gift of friendship beautiful.  Doodling on to Tuesday's 7:00 AM appointment.   

Bald is Beautiful?

The folks at MD Anderson don't lie...they have too much data/statistics to make up this stuff.  So, at exactly 4:35 CST on Monday, March 19th, 2012, I began losing my hair from chemo.  They said it would begin on the 13th day...and 4:35 would be the 13th day, 5 minutes after I finished my first treatment.  Mind you it was just a few hairs to begin with, a little on your shoulder, a couple in your hand when you absently minded brushed your hair away from you face, a few extra on my pillow by Tuesday morning.  I thought to myself, dang, it has started.  I hoped that it would be slow hair thinning rather than the full blown hair loss at break neck speed.   As Tuesday progressed, I was seeing signs that the hair tsunami warning flags had been posted.  It was kinda like having a dog losing its winter coat, in one day.  By this morning, the hair tsunami had begun and the villagers were fleeing.       Hand fulls of hair were coming out, if I so much as nodded my head, forget brushing it.    The collateral damage to my house and floor was unbelievable.   By 9:00 this morning, I knew that my remaining hair would not see the end of day on my head.  Since I am hosting our girls' canasta this evening, I figured that food prep and hair loss should not be in the same sentence.  My thoughts of slowing thinning to hairless were quickly replaced by solution/damage control.  Ooooo, there I am again, wanting that control stick.    So, I showered and washed my hair one last time, put my big girl pants on, and went to my stylist.  She turned me away from the mirror, buzzed, buzzed and dusted the last of my black and silver locks away.  She finished by tying my Lindsay original chemo/surgical scrub cap (Side Bar - My niece, Lindsay, is just finishing med school and will start her residency this summer in anesthesiology.  She has perfected the best pattern for surgical caps---in her spare time, ha,ha--and was kind enough to make her Krazy Aunt a pair for the upcoming months.  I will wear them with pride.) on so I could do the big reveal at home, just in case there was screaming or tears involved.  No screaming or tears, just glad that part of the "monster under the bed" is done in my treatment.   While I could share pictures of the my with HDS---I am not quite that big of a girl yet.  I will get bolder...until then, I  will be the one with the wig, scarf, cap, etc., trying to not attract attention.   Not sure if Bald is beautiful, but it is one less thing to worry about.  

                                                    This is your shower drain on drugs!

Humpty Dumpty Syndrome

The word for today---and probably the next 9-12 months-is alopecia.  Simply put it is hair loss--- be it alopecia areata (patchy hair loss) or alopecia universalis (total hair loss) . For me it is the most frightening aspect of cancer and chemotherapy.  I am not vain, far from it, but it is the fact that everyone knows you are undergoing chemo when you have no hair.  I would prefer to go on about my business, without advertising it.  Just the way I am.

My Onco Doctor did not mince words when discussing the side effects of chemo.  There were tons side effects double talk--- may, could, might, but when he got to hair loss, he said "you will". The side effects from my first round have been manageable, for sure.  Could I hope for the same manageability with my hair?   The various literature out there suggests that you might have "hair thinning".  Okay, I can do hair thinning, after all I have enough hair on my head to make most stylist have to take a break mid cut, and it fast growing, too.  Since receiving my diagnosis, I have not colored, over processed with heat or chemicals, have keep it short, and not washed daily... I am not a hair person to begin with, so that lifestyle change presented no problem.    A friend even located a chemo cold cap called the penguin cap, that you wear to your treatment, in hopes that the cold would chase away the heat seeking chemo drug.  The "T" portion of my chemo attacks fast growing cells (hair, nails (not yet), and inside of mouth (yes)).  Unfortunately, the solution was found after I had started, too late.    Can I hope that I will be more of column (a) thinning, and less of (b) total hair loss?  However, a (c) selection would be splotchy hair loss like a dog with mange... According to others that have traveled this road, it is (c) for your head, and (b) for the rest of your body...and it usually starts on day 13 (tomorrow) after your first treatment. My scalp has tingled and itched since my first treatment, but no signs of hair loss.  However,  it will be a black Monday for sure if my pillow case is furry when I get up in the morning.  I have performed a quick inventory of hair.... starting at the top, eyebrows and eyelashes--will miss those for sure, how does one look surprised, shock, or give the patented "Lyle" raised one eyebrow when expressing frustration or displeasure?  Upper and chin hair - excellent, can save on that monthly waxing expense...however, will it come back longer and stronger when it regrow? Underarm and leg hair---same as upper and chin hair.  Brazilian bikini wax with no wax--okay it will be something new, but guess that is not a big deal these days if you are much younger or thinner and sporting the "look".  Believe it or not, that is the second comment you get from chemo patients and second question you get from friends.  Now you know, kinda like the Scot and what is under his kilt.    So, to review the inventory and vocab for the day---I am 24 hours out from the beginning of a hair sumani--- alopecia universalis--which I will hereinafter (like my legal wording)be referred to as "Humpty Dumpty Syndrome" (HDS)---the Hump didn't have hair or eyebrows, we can relate...and there are days that I feel like I have fallen off a wall.    I wonder, could I file for disability or at least a handicap parking sticker?  It would come in handy at various hospitals.

In preparation for my upcoming HDS, a pair of long time church friends took me on an adventure on Friday.  They are quite the pair...related by marriage.  One is a zany (great Words with Friends word) gal, that can make you silly laugh---but is really a pretty good listener.   The other is a 7 year breast cancer survivor and has become my guardian angel.  She has been done this road before,  a nurse by profession, she is holding the flashlight as I walk down this new path.  We went wig shopping at Andrea, lunch at Hillstone (Houston's on Kirby, new name, same menu) and dessert at the Chocolate Bar in Rice Village.   If laughter is the best medicine, I should not have to take any additional treatments of chemo.    Something about putting on wigs--serious ones and silly ones---like the blond shoulder length ball cap number--that makes losing your hair just a little less frightening.  The clients were chemo repeats---not the chemo but the wigs.  They enjoyed the wigs so much that they have continued to wear them for years after they finished.  Interesting, not sure I will be in that group--wigs are a little hot and itchy for my taste.  Those of us who are  new to hair loss--that would be me and a < 30 year old with her mother, with long blond hair. (I said a special prayer for both her and her mother---she had just begun her journey, so young and so afraid---)  And last but not least, the mother of 3 young boys that didn't want to be bothered with hair issues...think va-va-voom blond wig....guess that is why she has 3 boys.  I left with 2 wigs, a little more auburn than I am right now, a little more youthful than I might have selected on my own. Both cover my eyebrow area with flirty bangs---between that and my glasses, I won't be getting out the eyebrow pencil.  Lucky you, I struggle with a straight line--an arched brow would be totally out of my ability range...and tat eyebrows are totally on the red marker list.    We even nicknamed the fuller of the two.   There is a certain news anchor on Channel 2 that has sported the look in the past...that would be so Eddie's fantasy--just add a yellow jacket, and I'm there. Like I said, laughter is the best medicine. My kids are rolling their eyes about now.      With that and my every growing box of head gear, I will look different every time you see me...if I am sporting the rainbow wig from Halloween when the kids were little, you are free to laugh, if you think I look silly in the more expensive ones, just say so, and laugh with me.  I want to share the gift of laughter.

Karen, Rosie, and Kacie

  Believe it or not, this is the same style wig on all three of us.  See, you won't even recognize me...I am the blond in the middle....  Other than my vocabulary lesson today, the life lesson I keep learning day after day in this journey is that you will receive many acts of kindness, words of support and friendship from so many people from both your past and your present.  In accepting that gift I need to remember to share it with others when their struggles come.  Thanks again to you all for your gift of friendship.

The Ninety Day Rule

In my Overview section, I refer to our mantra, "We can do anything for ninety days".  It is the Pickle family spin on my mother's expression of "don't try and eat/swallow the whole elephant in one sitting."  It was her gentle reminder that when overwhelmed by a situation or a task, don't try to comprehend, grasp or otherwise process everything at once.  Take it in small bites, one day at a time.  This is pretty profound coming from a woman who has always been the big picture person, no job is too big, no mountain too high kinda gal (I will have to devote a whole posting to my mom, she is an incredible person).  But I don't remember that piece of advice so much as a child growing up, but more as we have gotten older, maybe it was her wisdom of later years that has coined that expression.  Fast forward to passing along the sage advice to our children.   George takes everything literally, it is who he is.  If you are talking about eating and elephants in the same sentence, he immediately thinks that elephant is being served for dinner.  We have been know to do experimental cooking at Casa Pickle, but even elephant would be a little outside the box for us.  So, we have come up with our mantra, "we can do anything for ninety days"...one day at the time.  We are almost at the end of our first 90 days of Pickle medical crisis du jour, so I figured you deserved a George 90 day report.

A little background.  George, well, is George.  There is a oft used expression, that "God gives you no more than you can handle"...extended to include "and he must have thought you could handle a lot".  That would be George, he handles a lot more than two people combine, but never questions, has the same pure heart and spirit that always keeps going.  George has Asperger's syndrome---he was diagnosed a long time ago, right after it became an official kind of thing, but because he was academically successful, and could handle traditional settings, we chose to keep pushing along as we always have done.  There were no guide books, help, or therapists, we figured it out on our own.     If you are unfamiliar with Asperger's, wiki it.  George likes to think of himself a combo of Sheldon Cooper (Aspie with OCD) on Big Bang, Jerry on Boston Legal (Aspie with Tourette's), Raymond in Rain Man (Savant with Monotone vocal delivery) with a side order of Pickle.  He has always laughed as said that he learned about human nature watching Survivor.  Yeah, in addition to the aspie characteristics, he is OCD, has vocal tics (Tourette), and has been know to put an audience to sleep when he gets cranked on the Little Professor network.  So, George now is juggling three bags.  God decided that he could handle a little more....like a steamer trunk.  At the age of 12, George started down a long dark hole known as Crohn's disease.  For the past 17 years he has been juggling his baggage as best as he could. Last summer it was determined that his large intestine was starting to show early signs of cancer....huh, what, Crohn's is in the small intestine.  Really, another bag (literally and figuratively)...come on, give the kid a break.  So, we walked forward to 2012, repeating the mantra, "we can do anything for 90 days".

Today, George is 72 days into that 90 days.  He is right now visiting his surgeon, looking at a reconnection date for his intestine.  His GI Doctor has asked that he wait until the end of May, after yet another colonscopy (not sure how that works with his plumbing, may not even ask), to make sure the Crohn's is still in remission (side bar:  remission=good, no repeat surgery).  George is fine with that, even telling the Doctor,  "Hey, what's another 90 days".   When faced with this challenge, we were all about the 90 day rule, but in private, Ed and I were trying to eat the elephant....Aspie, OCD, Tourette's, TMI Lectures on Ostomy Bags...oh my...He continually surprises us ---so strong, so quick to heal, and get on with life. In his own way he has been a great deal of support and comfort to me...not to mention picking up the slack on household issues.    When I am having a rough day, he gives me a hug, and looks into my eyes (two things that are really hard for Aspies), and says, "ninety days, Mom, ninety day...one day at a time".  With George as my example, I can't help but be strong.  Oh, by the way, Ed made his appointment with the Ortho surgeon for measurement for his knee (left) replacement this morning.  His ninety days will begin pretty soon....should be interesting.

Life is a circus

A long time ago before there were so many different things to entertain us and otherwise take our money, there was the traveling circus.  Mind you, this is the more of traveling Carnival less Ringling Brothers and definitely not Cirque du Soleil.  It was a big deal when the circus came to town, all the pretty ladies in their sequined outfits, the clowns, the animal acts and a couple of things that were really strange freaks of nature--this was such a big deal that the town would have a parade.  The circus also had two types of horses--the show ponies--usually white or gray, prancing with feathers and bling. They were stars along with acrobats and acts on board. You just know that they were stabled in a covered area, so they would not get muddy.  They would be brushed so their coats would shine, they probably even had a blanket with their names embroidered on the side. If there was a plush animal prize for a game of chance or concession that had the show pony as a prize, it was the one the little girls wanted most.   Then, there were the work horses, the dark colored ones that pulled the wagon, hoisted the tent, and gave rides to children chained to a center post. I doubt there was much of a market  for the work horse plush animal.  Both horses worked, very hard, but were basically different.  Neither horse would be comfortable with the other's harness.   You were either a show pony or a work horse.

I am a work horse.  I come from a long line of work horses. I have always hitched my harness and plowed the field regardless of the weather or how big the field was.    Taken care of business, with not much drama and not much maintenance.  I don't usually need to have my butt powdered, or need to be given a lump of sugar (yellow marker) to keep going, just an bucket of oats every day and I am good to go. Ney, whinney.   In the past few months, every one has told me that I should take it easy, relax, let others do for me. I am trying, but it is hard.   I simply do not know how.  I am too old to become a show pony, I am so well trained that if cut loose I would return to the barn, or at very least keep going around in a circle giving the kids a ride.  I am happiest when I have a sense of purpose and accomplishment to my day. 

But for Monday, I was moving toward, getting my harness back on, and looking for my plow.   The angry villagers from Neulasta returned  because they didn't finish me off last week.  At one point I thought I was a horse headed to the glue factory...ugh, that is so last week.  Some drug intervention (read: drooling drug coma) and promises from my Onco Doctor that I would not be terrorized by the villagers on my next cycle (read:  No day after shot), the sun did indeed come out on Tuesday.  By the time I spoke with Lauren mid afternoon, I had been to the store, brain farted a Lunch date (hey, I now have an excuse--chemo brain) , taken a load of junk to Goodwill, cleaned up the cabinet in the garage, swept and blew the pollen, spiders and leaves out of the garage, clorox the green slime on the pool deck, and was prepping for dinner....boy, I love the feel of the plow.  I know this is not seem like a lot of activity, but to an old work horse, I was glad for energy that allowed me to get r' done. 

Tomorrow, Lauren goes back to work.  A little less than 6 weeks after having Eli.  When she was growing up, I thought she was a show pony, for sure.  After all, Ed's mother, Maxine, was the queen of show ponies.  But Lauren has proved me wrong, time and time again.  She is a work horse, just like her mother, but she does it with so much more style and grace than I ever had at that age...it must the work horse with a sprinkle of show pony in her gene pool.    I watch her in sheer amazement...my heart almost bursting with pride.  She is a wonderful wife, mother, worker bee, and friend...but best of all she is a great daughter.  She returns to work with a unusual schedule....when you have a 24/7 conference center, you can be creative with your 35 - 40 hours a week, it just doesn't leave a lot of "me" time.  Just like the circus horse, she will have a lots of different jobs everyday, each which will take her full energy.  It seems like a lot now...but she has been training for this, and I know she will be fine.  Meanwhile, I am saying a little prayer for my precious grandson, Eli, to sleep tight, so his mommy can get back in the harness tomorrow.

The Quail Years

Last night Ed and I got out of the house.  It is not the type of activity that should merit much attention.  We have a regular group of couples that get together every 6 weeks or so for Canasta and dinner.  Calendars are set at the beginning of the year, you are expected to hostess when it is your turn, trade for conflicts, and try to be there if your travel and grandchildren will allow, or at least let everyone know well in advance.   When this time's reminder came, I knew that it was only 4.5 days after my first chemo treatment, so, I said yes.  It was a goal.  Mind you, not a lofty goal, but a small goal...reclaim normalcy in our lives as quickly as possible.  I have read of people that have their treatment on Friday and return to work on Monday, so going to Dinner and Canasta should be easy.  It was great to get in the car and not be headed to a Doctor's office.  The men of the group all gave me a fist bump and a kiss---they are afraid to hug---not sure if I might wince in pain or bite them.  Their question--"You good?"  Yeah, I'm good.  So much for chit-chat.  Drinks (yes, red marker, I had ice water) and munchies, lots of chit chat, then dinner.  With this group, the men are in one room eating dinner, the ladies in another.  The girls always want the down and dirty, and their own bowl of chocolate snacks.   They want to know all the 411, just in case the need the information or experience for themselves or other friends.  It is what women do, we gather input,  we empathize, we care, we feel.  But their question of the night was simple - "How's Eddie doing with all of this?"  Without hesitation, I answered, "He is a quail".  After all, these people know us well.  I am the care-or and Ed is the care-ee.  Bad training on my part, but after 36 years he is use to being the one cared for.  

A Quail you ask...specifically a Gambel Quail.  It is a quail that lives mainly in the Arizona Desert.  The male has a round body, short neck and tail and a top knot that kinda bobs as he scurries around the desert floor, yeah, that would be our Eddie. However, his knees have kept his scurrying down to a shuffle.     I was introduced to the bird some years back by my sister, Kathy, who lives in Tucson.  She always brakes for quail, because this quail is a monogamous/mates for life kind of bird. If there is one, their mate is not far behind.  If one is struck by a car, the other will come and stand over the wounded bird, as if to say, "I will stay with you to the end"...or until the next car comes and takes me too.  Not like the randy bunch of Mallards that inhabit our yard and dock --they are more of a "love the one you are with (today)", "is it my turn yet" group of birds.  More times than I can count in the past weeks, Ed has been there, with his top knot bobbing, with eyes that speak shared pain and fear, but also, the promise to stay to this whole cancer thing is done. There are nights he just holds my hand as we sleep, hoping that he can make it all better.   We have arrived after 35 plus years of marriage, to the quail years. (Can't take credit for that expression--it is Kathy's)  It is the part of your marriage vows that start, "for richer or poorer",...through "the sickness and health" and end with the "until death do we part".  Not everyone these days is lucky enough to get a quail.  I looked around the canasta table last night, quails must be a pack bird, because everyone there is a quail..and what is the old saying about birds of a feather.    Everyone has been married at least 35 years, with one couple for 50.  We accept our mates for what they are and aren't and realized that we are lucky to be mated for life.  Yeah, the quail years.....life is good.  

Marking time

About 20 years ago, give or take a few years, Lauren was a Brownie Scout, and surprise, I was involved with the troop...cookie mom, troop leader, summer camp leader, whatever was needed.  One particular summer there was summer day camp held at River Grove Park.  Don't remember all the particulars, but I do remember that we had to name our group.  Given that they were very social and noisy flock of girls, they decided to call themselves The Fantastic Flamingos.  The girls would stand on one leg, giggling wildly, make a strange bird like shrill and scream, ..."and we are Fabulous!"  Lauren can still make me smile with a shriek, tucked arm and winged salute.  Ahh, the simple silliness of 8 year olds.

When we were driving last week to the Woodlands for my first chemo treatment, we drove past a yard with the retro 1950's pink plastic flamingos staked around the flower beds. It gave me the same smile and giggle as that silly summer.   Idle mind/devil's workshop kinda of thing started to take shape in the back of my brain.  I am not an in your face, wear pink, I have/survived breast cancer kinda gal.  However, after going through the treatment, I determined that I, too, needed to claim my victories each time.   On Wednesday, before I was mugged and beaten by a group of angry villagers with clubs, rocks and steel toe boots (see Neulasta warning label), I went online and ordered a box of 6 plastic flamingos.  They are not the really tall and expensive ones by Bob what's his name, because I am basically cheap. These are  more of the Oriental Trading variety with whirling arms and cost less than a trip to Starbucks for two.    I decided that each time I came home from a chemo treatment, a new flamingo would join my flock.  When my chemo treatments are finished this summer and I begin six weeks of daily radiation treatments, I will remove one of my flamingo friends each week, until they are all down in their box.  I am more than willing to share by flock with others.  If you have a friend that has breast cancer and is undergoing treatment after I finish with mine, let me know, I will send her my birds and a Journal...kinda like the Sisterhood of the Traveling Flamingos kinda thing.  I have realized that in the journey out of the valley that the encouragement and support of others make a difference.  So, yesterday after UPS delivered my flock, Ed went out in the pouring down rain put the first flamingo in place.  

So, when you come to my house, look for my flock, coming and going.  They will be there, in the flower beds around my front door, I am sure each will have her own story to tell.  Until then, wing salute.....

Moses and the Ten Commandments

Remember the Bible story of Moses receiving the Ten Commandments on Mt. Sinai on his adventure from Egypt?  For you movie buffs that need a visual reference, 1956 DeMillie/Heston, The Ten Commandments, complete with parting of the Red Sea.  Moses went up the mountain, came down forty days later with stone tablets of the Ten Commandments.  (The forty days was edited down in the movie adaption.) But, you can see Heston with his graying hair, with the tablets, going over the rules.  There was not a lot of wiggle room, it was heavy on the "Thou Shalt Not", strong on the "Obey" and "Honor"---period, TEN, done!  

Fast forward a couple thousand years and we have cancer patients going to Mt. Anderson for forty (at least) days.  Not to be out done by Moses and God, they issue their stone tablet in the form of a pink notebook (for breast cancer---I am sure that every cancer has a different colored notebook).   A lot has happened since the time of Moses---we are after all a free people able to make our own decisions, but the stone tablet pink notebook has plenty of suggestions, considerations, best practices, and rules.  It is a 1-1/2 inch three ring binder, with pre labled tabs, clear sheet for all the business cards you will be receiving, and pockets for sticking the stuff you get at every visit. (Note to MD Anderson print department, larger notebook, give sheets out that are prepunched...it might find a home in the notebook.)  It is a full time job to keep up with the reading, filing and cross referencing.  Before tackling your homework notebook, be sure to pick up a pack of colored highlight markers.  Red/Orange to highlight the do not, yellow for the should not, green for the can do items, and blue for the recommended items.  It will help you sort out your new Ten Commandments.  From a lawyer's point of view (that would be Eddie), when you sign on the treatment at  MD Anderson for Cancer Treatment (or any other of the country's top Cancer Centers), you become one of their numbers.  They want you to be successful in the treatment of your particular cancer, so you to can cross the cancer out with the red marking pen in their commercial.  But, they also don't want you to lose in the fight with bad habits or risky behaviors, so they are going to have rules.  You can't be Number #1 without rules. After all, you are part of the science experiment, they would like to have the control stick on the variables.

Some of the rules include (but not limited to) not taking hot showers, only tepid, with these recommended soaps and lotions.    No hot tubs, soaking baths, or public bath houses. Minimize processing your hair with heat, dyes, chemicals, products, but you are going to go bald anyway, so why should they worry about the 14 days before you start to loose your hair.   Change your deodorant and toothpaste so that they do not contain these ingredients.  Do not (red marker) use herbals or unapproved substances to help your body get over the toxic shock of chemicals.  Minimize activity with outdoor animals, zoo animals and livestock---is mad cow a potential side effect to chemo? Eat a largely plant based, organic diet, with whole grains, free range, organic chicken, sustainable fish from wild or farmed US waters, nuts and twigs (green marker). You should minimize sugar and sugary snacks (yellow marker), as sugar feeds cancer---what about dark (or any) chocolate, I thought that was on the good list.  Then, there is the wiggle room part--turn the page in nutrition and it refers to prepackaged boxed meals, like Mac & Cheese.   Where is that on the plant based list, haven't seen fields of blue Kraft boxes waving in the sun lately.  Also, it recommends (blue marker, please) you should not consume more than 18 ounces of red meat---beef, lamb or pork, in a week.  I doubt I eat that in a month.  My favorite, however, has to be the section on consumption of alcohol.  It was written by a lawyer for sure.  It states that the American Institute of Cancer Research or some such lofty thinking tank, recommends (blue marker) that you refrain from consumption of alcohol during your treatments. Like I will be reaching for a drink while I am on the vomit comet...  However, if you do partake, it should be limited to 2 drinks per day for men and 1 drink for women. It then continues with what that amount is.  A serving shall constitute 1-12 oz beer, 1.5 oz hard liquor, 4 ounces wine.  In the generation of super size and the Reidel wine glasses, glad they made that clear...Good Grief.

Once you have conquered the basic rule book and think you have a handle on your new lifestyle, the blizzard of new pages come with every visit.  Each has their new set of dos and don't.  Get out your markers and add sticky notes to your bag of tricks, because this is where the rules start getting fuzzy.  On my "T" chemo, the side effect, rule sheet, has the usual dose of in case of allergic reaction and what it is and when to call 911, it restates the drinking alcohol rule from above.  Okay, according to my lawyer, that means an occasional glass of wine (4 ounces, as in the wine glasses I got as wedding present  for my sister 35 years ago size)  on your good week might be okay.  However, the "C" chemo sheet, said in big bold do not (grab your red markers, folks) even think about drinking anything...period---Ten Commandment style. Figure the wrath of God or your liver might fall out.  So, my Lenten season has gotten a ninety day upgrade.

On to yesterday's three hour trip to the Woodlands for my post chemo, immunity building, white cell booster shot, that is given exactly 24 hours (and not a minute less, we tried) after the end of the previous days chemo treatment. (Ed spoke with the nurse about get a Rx for the injection, and giving it to me, himself, instead of driving back and forth.  After all, he had wanted to be a Doctor before he became a lawyer, and he has watched TV medical dramas- doesn't that count for anything?) Today's treatment handout was three, non-hole punched, sheets of side effects, and warnings.  And, there I was without my highlight pens.  Side effects include bone, joint and tooth pain, particular your long bones (arms and legs) with a special shout out to your hips.  Got it, next, in the red marker section of do nots would be the part about don't take aspirin, NSAIDs, or tylenol or any pain relievers as it might mask a fever or reaction that could be life threatening or relieve the pain that you might be experiencing.  Okay, how long will these side effects last---a few days, or possible weeks.  I asked what I should do for these things...since they have taken hot baths, showers, herbals, liquor off the list of alternatives.  Take Claritin the nurse said.  Not on the list, just a sticky note in the nurse's file.  Got it, with pollen so bad that my gray car is yellow, I can do that.  Have my microwave cheetah neck pillow with lavendar oil for my tooth ache, and my 24 hour generic Claritin tab, will be hanging around the house today for sure.  Boy, the rules were much simpler in the time of Moses (heck, even in Heston's day).

Horoscope

Yesterday morning , as I settled down with my usual first of 3 large cups of Starbucks Breakfast blend coffee and the Houston Chronicle, I decided to read my Jacqueline Bigar's Horoscope for the day.  Since I already have the power of prayer going for me, mediation and howling at the new moon covered, what could a quick glance at my 'scope hurt.  For Tuesday, March 6, my Libra (yes, I look for balance), read: *** (3 star day out of 5 stars-fair day, scales of balance titled toward positive---I'll take that) "Today, you will witness a radical change in your mood, energy and sense of empowerment.  You could drag your heels for a good portion of the day, then suddenly feel as if you just woken up from a wonderful night's sleep."

How did that work out for me?  Radical change in my mood--yeah, it was pretty radical.  I had a great deal of fear, anxiety, and general dread going to MD Anderson in the Woodlands at 11:15 yesterday.  It is about 45 minutes there, and another 15 minutes looking for a parking place.  The weather was overcast, adding to my less than sunny mode.  After the usual, name, medical record number (can they just not UPC tattoo that to some body part), birthday, here is your medical id bracelet for today (I have quite a collection at this point).  We were ushered back to our private infusion room, with a nice recliner (had to arm wrestle Ed to get the chair) and an suitably uncomfortable waiting room chair for him.  My infusion nurse came in, Amber.  After exchanging the necessary medical info, we stumbled upon the fact that she knew Lauren.  She had "happened" at Camp Allen when Lauren was the Happening Director during her Senior year of high school.  That six degree of separation thing...she was probably much friendlier and more attentive that a random bench nurse would have been.  So, she helped reduce my fear level to almost a manageable range.  Amber then began hanging the bags on an octopus IV stand, 8 bags, with more interchanges and connections than the I-610,I-10, Hwy 290 interchange by the Gallerie.  Glad she knew the on and off ramps like the back of her hand.  The IV port (last week's medical pain in the boob) was a life saver, my veins were happy not to be called into duty again.  It wasn't that bad, just took 4.5 hours, since you can't throw it all in at the same time---might be toxic..yeah, right, don't want to be toxic or anything.  I only struggled slightly with the "T" - Doxotaxol portion of the chemo.  My throat started to clench--but Amber was just a drug throw away and nailed me with bendaryl...lots of it, I was home by 6:00, dinner and pajamas by 7:00, and in bed by 8:00.  The energy portion of today adventure--I was clearly not myself when we left at 4:30, kinda of like one too many margaritas, but I was calm for sure.  Sense of empowerment-yeah, that would be the high point--one down 5 to go, I can do this, no problem, piece of cake---must be the artificial adrendine/manic from the steroid making me say that.

Okay, part two, the suddenly...woken up---3:00 AM, to be exact.  Wonderful night's sleep part--well maybe-- according to my bedmate, I sawed logs, until 3:00.  Then it was like I had a Casa Elena's Pitcher of Margarita Hangover. For those of you long time residents of Kingwood, their margaritas are legendary for their strength and day after effects...even in smallest of doses.     The front and back of my head hurt--thanks bendaryl blood pressure spike and steroid eye pressure issues...nothing an ice pack on the back of the neck won't fix.  Salt and Lime - that would be the total acid feeling that I am experiencing----tears, sweat and anything else that leaks water...will probably have to burn my underwear if it doesn't have acid holes in it already.  Digestive tract, operational, with lots of grumbling, but eating yogurt, pears and other healing items in an attempt to ride out the next three days of threatened side effects.  Oh yeah, nerve endings---tingling, and firing at will.  I guess the side effect portion cause the two star downgrade on my day's 'scope.  Other than that I have survived the day.  Of course, just about the time I might feel like myself, we will drive back to the Woodlands during afternoon rush hour for a booster shot for my red and white cell stimulation...which comes with the bonus of bone and joint pain...but of course, there is a drug for that.  For a person who has tried to avoid the drug route her whole life, giving my body time to heal itself, I have made up in the last 4 months for forsaking the drug companies' profit margin.  Eddie has always been our family's drug company poster boy...best blood work money can buy.  I thought that it was a family plan, not individual achievement.

In the coming days, Lauren will update my header for my blog, she is really good at that.  Make it a little more pickle-fied and a little less pink.  I am not a wear pink, embrace the pink ribbon, type of person, figured when I go bald, that will be like a big neon sign, no need to wallow in it. So, the top will change, the warped sense of humor won't.  Thanks again for your thoughts and prayers.

And so it begins....

In the immortal words of Sean Connery, when asked about playing James Bond again, his response was, "Never say never".  You'd think that I would have learned that by this time.  I have said I would never have a blog, or publicly ramble on about my issues or those of my family...cause I don't like the attention and basically a very private person.  

However, in the past three or four months, I have had time on my hands, between various procedures, doctors visits, and more than the regular number of  sleepless in the suburbs nights. During the night quiet as my mind spins in a thousand different directions, I can hear my wise grandmother whisper in my ear,"Idle hands are the devil's workshop".  As well as the reminder from my youth,  "Nothing good happens after midnight".  I am definitely looking at idle hands over the next 18 weeks (24, if you count the radiation that follows the controlled poisoning, oops, I mean treatments)...and I don't want to find myself in the "devil's workshop"--cause I feel like I have already taken a couple of laps around it.  Should I find myself up after midnight,  wandering the house or 'hood, I might as well be doing something constructive....since most of my Words with Friends pals go to bed by 10:00 PM.


Yesterday was the first day with my new drug routine for my upcoming chemo treatments.  It involves two very small mint green tablets of dexameth---a steroid, which lists in it pages of side effects, headache, jittery nerves (my words, not theirs), insomnia,  and weight gain...and that is just the most common, more pleasant ones...yeah! Check, check and check---right on schedule--can't wait for today's additional side effects.   So, here I am in the middle of the night, learning how to create and post to a blog, on the day I begin the first of six chemotherapy treatments for my Breast Cancer.   I am not sure what direction this might take or the frequency, but I hope to be humorous, informative (cause I am sure you all are dying to know what is going on in my life), and on occasion a little sappy or reflective. I promise to post pictures of my beautiful one month old grandson, Eli.  I, however, am not promising to post pictures of myself...have never like pictures of myself, I prefer the lies I tell myself when looking in the mirror much better.   I will also share my family lexicon of phrases.  Not sure where they come from, but both my sister, Kathy, Lauren, George, and I all use them and assume that everyone know what were a talking about.  Example: "I am going to go beep for bucks". Translation:  I am going to the ATM and get cash.


If there is a day when there is nothing going on that merits a posting, I will go back to things that have happened in the last ninety days---there are some real great stories that need an audience, cause you can't make some of this stuff up.  If there is nothing, assume I maybe hibernating, or out after midnight getting into trouble.