By the numbers

I am done! The Triathlon (Surgeries, chemotherapy and radiation) known as Breast Cancer treatment is complete.  I started this journey almost nine months ago with a  report of a "suspicious spot" on my mammogram (November 17, 2011)  but as of Friday, August 24th, 2012, I have completed the race.  As with all long distance runners, I have had to learn to pace myself, take care of my body before, during and after the race, and not give up when the going gets rough, just keep pushing.  There have been lots of life lessons learned during this very humbling experience.  Usually there is only one triathlete in a family, but you know us Pickles, we all wanted to race, at the same time, on different tracks all over Houston.  So, lets recap the numbers...

7833   Number of miles (at $.55 a mile - $4308 for tax purposes) that we have driven to and      from the various doctors/treatments/therapies/surgeries (4112-Karen, 1514-George, 2207 Eddie---I win!) While I win on the mileage, Eddie wins on the parking fees.  His doctors are downtown and charge $12 to park, the Woodlands is free.  Eddie gets a half point.

84  Doctor appointments (42-Karen, 27-Eddie 15-George--I win) You realize, of course, when you have 84 doctor appointments you have spent at least that many hours in a waiting room

71 Inches of Stitches (36-Karen, 20 Eddie, 15-George--I win, again) Eddie's are the prettiest, and with proper care will not be that visible even with shorts on. Mine look better every month (except the ratty chemo port that comes out on Tuesday of next week--yeah) but very few will see those.  George gets a half point for scary scars, for sure...hope the stitching on the inside of him is prettier than the outside.

40 assorted tests, xrays, scans (29-Karen, 8-Eddie, 3 George) The winner in this category gets to glow in the dark--that would be me.  Next time you see me, ask me how to scare a Radiology Doctor.  It involved a long wire in my boob before surgery number one.

38 visits to CVS for drugs (20-Karen, 10-Eddie, 8 George--hummm-Me)and these are just for the Rx drug. The additional trips for OTC/bandages/creams and assorted first aid items were at least that many.  I am so glad that our pharmacist is also a long time family friend, people in Kingwood would think something was going on....

30 radiation treatments - 6 weeks, five days a week, 45 minutes drive each way, leaving at 7:45 each morning...this is not in the Doctor appointment count, and there were mornings that there was up to a 2 hour wait for this.

25 nifty headcoverings - wigs, turbans, scrubs caps, in assorted colors - no winners here, just a fashion statement kind of thing.  This number was actually lots higher, but some did not look quite as good as others, so they were donated to a Cancer Support Group.

24 Physical Therapy treatments - two knees replacements---still star of his class.  Eddie got his groove back in record time--we will let him win this category

22 days in hospital - (George 16, Eddie 6, Karen 0) The zero by name, I have come to realize is a small victory.  When in the waiting room for the various treatments, tortures, and appointments--there is sharing---I was surprised at the number of people that had numerous reactions, infections and hospital stays.  George wins on points, but I get a half point for my 0.

22 hours in surgery (George 10, Eddie 4, Karen 7)  George wins--hands down, it was not even close.

17 times we have seen Eli - best medicine in the world---he is sooo cute, and has a smile that lights up the room with an infectious laugh, that makes me laugh.

7 surgical procedures  (Karen 3, George 2, Eddie 2) - Lauren wants a point for her C-Section delivery--since she is a Pickle/Day.  Tuesday's port removal will give me a slight lead on quantity at a total of 4.   

6/6/18 days/shots/weeks of chemotherapy (Karen 6 rounds of chemo, with Neulasta shot the day after for 18 weeks)  The boys can't hang here---particularly Eddie--he doesn't do nausea, bone ache or fatigue.  Done!

6 pink flamingos - in the yard, out of the yard - back in box - done!  Ready to be shared with some one else.

0 hairs on my head - Lost all my hair on day 13 day of the first round of chemo, here I am 11 weeks (77 days)---nothing on top.  Well, crap.  My legs have gotten the message--and have picked up on where they left off, but the top of my head, not so much.  My doctors have no explanation---more of "it happens" kind of thing.  Great--just my luck.

1 pill for 5 years - Bleh!  Estrogen inhibitors--not a fan, on second formulation.  The bone and joint pain from the Neulasta shot for five years---seriously?  Hot flashes?  That is so last decade for me. Aggressive behavior/mood swings ---bitchy---Eddie is sooo looking forward to 5 years of that.   20% reduction in reoccurring risk---nothing to sneeze at, will keep pushing.

1 out 2, 1 out 3 -These are the American Cancer Society statistics for Men and Women's chances of developing cancer---with skin being the most common in the count--during the course of their lifetime. Take care of yourselves--- Which brings me to my last number....

1,732,865- That is the number of prayers, words of encouragement, random acts of kindness, cards, calls, emails, Words with Friends games, that our family has received over the last nine months.  Thank you all for your support.

How I am I Spending My Summer Vacation

Remember back in the day when you returned to school and your first assignment was to write about what you did over your summer vacation? Come to think of it, I think even Lauren and George had some of those assignments. You always wanted something in your summer memories to be special, different, or something the other kids would go "wow" or "cool"...you certainly did not want to admit the truth that you had laid in the air conditioned house, watch TV and were really bored. Side bar...coolest summer vaca was when Kathy and I attended an Apollo launch as a NASA VIP with my mom, who was a NASA VIP. It was a down and back one day affair, with a plane ride and private tour, but it was way cooler than the car trip that everyone else had taken. While our kids did have some pretty good summer vacas..I still think watching (and feeling)a Saturn V rocket leave the launch pad is still top of the list for memorable vacas...yeah, space geek, I am. Fast forward, after a couple of years of business travel with Ed, semi retirement travel and full out retire travel...the last six months have been lacking in cool, interesting or wow...it has been boring, and I feel deprived. When we (I mean me and my travel partner, Ed) first started the 2012 medical year, we promised that we would reward ourselves we I finished my last chemo treatment,before I began radiation (usually a four week recess) and after he finished his knee replacements. Well, how's that plan working you ask, since I am finished with my chemo and Ed is three weeks out from his right knee replacement. The medical community all wants to see us before radiation starts...as if I might explode or something during rads...like a marshmallow in the microwave. Monday was Ed's day with Dr. Siff. What can I say, the boy responds to having his ego stroked...Siff gave him yet another gold star for being his best patient. Wanted to hire him to teach his other patients how to rehab after knee replacement. The man who was too stiff that morning to drive downtown, sprinted out of the very crowded office and nearly jumped over the furniture to retrieve me. He skipped to the elevator...he has a couple more weeks of three day a week PT, where he continues to showoff his flexibility and brag about the zero complications he has had. He has made loads of new friends... Told you we were bored. Tuesday was my turn...back to the plastic surgeon...for after, but before pictures. You know how much I love having my picture made to begin with...it is a head on crash of fantasy, reality and the whole "adds ten pounds" thing...hate them...just ask my family. So, a shirt off shot, cringe...while my neck up are not,part of the shot, I would know the girls before and after surgery in a heartbeat if said pics show up on a gallery of clients. Just hope I didn't sign that right away somewhere along the line. After regaining my shirt and dignity, I recognized that I was a mere 1.5 miles from the new Trader Joe's store in the Woodlands. Summer field trip...105 in the shade, yeah, let's go...if nothing else to people watch. I am familiar with TJ from my Tucson visits. I was curious how a Texas TJ would do..when you have HEB, Central Market and Whole Foods..Texas born and breed...and everything is bigger in Texas, thing going on..the bar can be pretty high for outsiders. There were lots of confused shoppers...this is not a big store...this is more for high end, empty nester or professionals, not mom with 5 kids. Got my party snacks...great selection and price, my chicken sausage (want to compare to my HEB) and the obligatory bottles of "two buck chuck" ($2.99) ...aka Charles Shaw wine, now rebranded as Trader Joes wine. Think that a midtown location may have been wiser, but since I have plenty of trips (30+) this summer, I will bring my friends along for their summer field trip, when we go to radiation and lunch. Oh yeah, there will be more shirt off pics after they nuke me. Dr. G said that it might make the skin look like a dried out citrus fruit, or they could change shape or size...like I said, no big bucks on cute underwear yet, can't wait. Today, is Wednesday, I was out the door solo by 7:45 for All day appointments with the mother ship of MD Anderson..complete with the usual awful traffic on 59 just as you get to downtown and crawl to 288. Eddie knows how to go through downtown and get back on right before 288 and avoid the mess. I thought I remembered, apparently not, chemo brain, whatever, I was on a one way going the wrong way during rush hour...the good Lord watches over me, thank goodness. If Eddie finds out, he probably won't let me leave the 'hood by myself..so mums the word. Anyway, it is more pictures after and before...shirt off...but don't know,if I would recognize them in a line up. Can I tell you how much easier a mammogram is when the girls fit on the platform, without help...not too painful either. Even the tech remarked how much smaller they were, since she had my before surgery shots. Interesting side note, she said you could tell how they had rearranged the furniture with the reduction. Most painful moment would be the close up of the ratty chemo port...so it is not confused with any of the other pieces of furniture..as if...I am currently waiting for my ultrasound, where they use way more than the recommended dose of goo. If I am lucky, I will be finished early and head back home before the traffic builds. Today's reward stop will be at Pensky's for a spice fix. Hey, you have to look forward to these small vacas. Next couple weeks will be pretty much like this week, hot, humid and doctor's waiting rooms. Radiation after the 18th looks more like a holiday since it suppose to be quick in and out. Gee, I hope you all aren't jealous of how I am spending my summer vacation. Will keep you updated on our unique staycation...until then, hope your summer travels are safe and full of good and happy memories.

Vicky & Wally

Today, as I sit awaiting the completion of my LAST chemo treatment, I thought I would tell you a story...of Vicky & Wally...this is certainly not a love story, it is more reality TV...Pickle style. 30-40 years ago, young ladies, women, and girls in general did not share their undergarment purchases...with anyone other than family/husband or occassional Doctor or oooo, blush, a lover. These items were foundations...not objects du art that required bank loans or are on full display with various skimp outfits. In my price range the fancy of panties, bra and slips (yes, we wore slips..full slips that matches our bra, panties and garter belt..which pre-dated panty hose, but I understand and has made a comeback---no thanks) were the Vanity Fair collection....I, in fact, still have the ensemble that I wore leaving on my honeymoon. Only wished it still fit. I guess that I stuck with my matchy, matchy sets of underwire bras/undies from VF until after my second child was born....to this day, I know it was the fancy panties that got me into a second pregnancy so quickly after the first. By that time the "girls" had added several letters to their alphabet and my cleavage started right under my chin. The final straw was when the underwire would poke out, work its way out of the bra and magically appear from the top of my shirt. Changes were coming...maybe even a hint of thing to come, lifetime of boobie issues. I think they call that foreshadowing... Anyway, two kids in diapers, one income, new house, a new car...on the budget line item, matchy matchy would have to be scratched for the more practical...foundations purchase. Kmart, WalMart (Wally) --- multi pack panties, no lace here, and bras in a box-- Playtex (living, as they were known) which came with large enough numbers, high enough multi letters and no wire to poke the crap out of me when I was holding two kiddos. Matchy matchy would be special, not,everyday. That and a little snip, snip for Eddie, assured us of no more panties surprises. I would treat myself and Eddie to at least a couple of sets of matchy matchy fancy sets, but day in day out---Wally was my go to. Fast forward to the present...or at least the last 5-10 years....Victoria Secret, Soma, and a whole range of pricey undergarments that I did not know existed until I stumbled upon the on the Internet or in NYC...wow, I could go broke putting fancy threads over my fat butt. Our budgets have changed...no kids in diapers or college, or needing their own underwear...so I could splurge. I would stick my toe in the pool on occasion and shop at Vicky...here again alphabet and letter issues, and underwire, too. So, I would return to my friend, Wally, with an side trip for vacas to Macy's (with a coupon--old habits never die). After the second surgery, I had been instructed to purchase supportive sports bras for the first six months, while the girls settled into a more normal position. Thank goodness there was a warning label in that...they were high ..a normal bra would have been right under my chin.... Well it is 4.5 months, so I beginning to get the itch for some new undies. However, I will say, I have enjoyed the sport bras phase...I now see why women love them, never got it when the girls were so big, it,just did not do the job. After redecoration of the mantle, encouraged by my mom's and sister's gift certificate for Soma, I have spent a week (in my spare time...when not being Flo-ren) previewing what it would be like to have bras in sizes that didn't look like car tags numbers/letters. Ahhh, fantasy vs reality can be so cruel. Silly me, the front had changed, the back had not. One thing about the bigger bras, the back is bigger, and smoothed the lumps and humps back there. Guess I never fully appreciated that aspect of 6-9 hooked bras with 2.5 inch straps...I just,saw to ruts in my shoulders, pain in my neck and mid back....traded that all in for Much more manageable girls, but had no idea they were covering for a jelly belly and back muffin top. While the jelly belly is one of the chemo side effects...really...they call it something more clinical like fat building due increase cortisol levels and the triggers of said cortisol by the T & C therapy..great another thing that makes me look bigger. I have a sneaking suspicion that this side effect will hang on longer than the treatments...just a guess, seeing how reality is a cruel mistress and all. Let's shop...I started at the top, for my budget (hey, I told you I am cheap) and did Victoria Secrets...more of the back of the store items, not the front, hot patterns, colors, or words like PINK on my fat butt...that would be no. Even had a coupon. Told you pink flamingos was my signature wearing of the pink/ribbon move. No sale, with pouty lip(read dejected) I left without a cute pink bag with tissue wrapped garments. On to Soma, repeat of day with Vicky, more pouty, more grumpy. I contiuned my journey from store to store..speciality and department, on hot Texas days...my mood became worse, no purchases or even possibles for my list after six months, which I have now been informed will be until September, since radiation can make things change, too. Yeah, yet another breast cancer item to be survived. So, Please wait before committing resources to the new undergarments. Sadly, I have come to the realization, that except for vaca/date wear, me and Wally will be going steady for the coming years. Some times, reality bites. On the positive note of the day, the last flamingo will be placed in the yard this afternoon. Had to hide it, Ed and George have become so interested in the flocking that they have tried to help me by offering to put it out for me. To which they draw back a nub, this is my victory...period. Additonally, with Eddie's second knee, a driving knee, he could not be part of today's victory dance and bell ringing (that the reward MDAnderson gives your for surviving the chemo). Deb picked me you and has driven me to to my the appointment time...which as we have learned is merely a suggestion. Luckily, they have started a new procedure here...it starts with communication and ends with a better time management program in the infusion clinc...so we,should be home before 3:00 this afternoon. I would like to say my "words of wisdom/input" has helped in their procedural changes (Hey, once a Type A organizer, always a Type A...we like the control stick, too) It has been a journey...it does change you, but not in a bad way...it does make you more mindful of your blessings, more forgiving of others faults (cause you let go of the small and petty things), and you treasure the things that matter most...family, friends and health. As I turn this corner, into the final lap...6 weeks radiation and putting my flamingos back in the box at the end of every week...there is a light at the end of the tunnel...remember you can do anything for 90 days, don't try and eat the elephant all at once, and keep a positive attitude. Wing salute! Please forgive any errors, IPAD is not the greatest for blogs and spell check...there is probably an app for that but I haven't have time to look.

Men are not good patients!

After the last five months, I have come to the conclusion that men, in general, do not make good sick people...God help us all if modern science figures out how to let a man carry a baby for nine months. After my last post from Methodist Hospital with George, I added the fifth flamingo to the flock...yet another Tuesday event. If it is Tuesday, the Pickle clan is at some medical facility received some treatment, artificial body part or reworking the plumbing. Obviously, Tuesday is a big surgical day in Houston...which baffle me as to why getting to the room after the surgery and wake up time is such a fire drill. Does not matter which of our fine medical centers you have chosen for treatment, it is hurry up and wait for your procedure (even if your arrival time is 5:30 AM), poor, if any information...until you speak with the doctor after the procedure, a quick post op visit, then the four hour wait for a room. Excuse me, they know how many are coming, how many rooms they have, how long the surgery normally last, so why do these places fail the math word problem, every time. There should be an app for that... Oh well, last Tuesday (June 5th), Eddie had he right knee replaced (for those keeping score-that is 6 surgeries on Houston Pickles, 1 c-section surgery on a Pickle/Day since the first of the year). Is there a trophy or something for that? Patient Eddie is not a good patient..he hates hospitals...he conned his Doctor into letting him come home in 2 days...yikes! So on Thursday morning, he had me arrive at 9:00 AM to spring him from prison. I knew we would not leave until 1:00, they want to charge you for the next day (probably why rooms aren't ready when people come out of surgery) but he was sure we would be out for 9:30..I win. Besides being a grumpy old man, he was in loads of pain, complete with nausea and vomit...of course, let's go home and let Florence Nightengale take care of him. (my friends call me Flo-ren for short). So, home we came. Did you know That if you have your knee replaced, you can't bend down to barf in the John? I guess that is why the area behind your sink is called a backsplash...clean up on aisle 3. It was a ver-r-ry long weekend...while he tried to be undemanding, when you have limited mobility, there are simply things you can not do...and Eddie is not patient. We have spent the week doing the physical therapy, but he is totally unsatified with his progress...remember he got a gold star for his left and was completely able to flex his knee by end of week three. So, it has been a long week at Camp Pickle, for sure. George has done well, stitches removed, just waiting for the all clear to resume eating a more normal diet. While he has been fine with his low residue (read white bread, pasta, and potatoes) he has tried of fin and feathered meats... He is looking forward to something red on a hoof...between my taste bud/semi queasy all the time issues, Ed's flat out queasy/barfing, and George's restrictions, I am more of a short order cook attempting to cook a meals that appeals to everyone. Will be glad when this part of our joint journey over...I feel like I cook for Luby's every day. Come Monday (curve ball for the Pickles, 'cuz chemo is in Tuesdays) my friend, Deb will be driving me to the MDA in the Woodlands for my last Chemo treatment...can I get a hallajuah! I am so looking forward to placing my last flamingo in the yard...and saying goodbye to all the pesky side effects that have been my constant companions for the last 16 weeks. I will not miss any of them, there will be no farewell party. I will have four weeks before my 6 weeks of daily radiation begins. I'd like to brag that I doing something fun and exciting, but, MDA, and all the others doctors on my dance card want to have a dance with me before I start to radiation. Add Ed's doctor visits and PT sessions, and there is no rest for the wicked and weary. I am sitting in Lauren's house watching my precious grandchild, Eli, who is almost four and a half months old...and keeping Cali busy while Lauren and Drew work. Tomorrow is Father's Day, Drew will celebrate his first, Ed's his 29th as truly wonderful fathers to their children. We are blessed in so many ways by the men in our lives...even though they are not great patients.

Almost Normal

Please forgive me, this was begun on Friday, and not completed until today.  George came home yesterday afternoon.  Since I have been so quiet lately, figured I would finish it up and post today.

As I sit in George's hospital room on the 8th floor at The Methodist Hospital for the second time in six months, the sense of deja vu is pretty surreal...talk about been here done that...only I am bald this time, with a little less gas in my tank.   This time is a little different, not so much drama, pain or what comes next.  No co-pay or out of pocket expenses either, did that on the first visit.   No feelings of panic or needing to stay overnight, just in case the nurses can't get there fast enough. Yeah, we were first in line for what the medical profession calls a "take-down" like taking down the Christmas tree, or WWF smack down (we call it a plumbing reconnect---at least with our definition you have an idea of what is being done, with doctors, no such luck). We had to be here for 5:15 AM (read: get up at 3:30 AM, leave house at 4:15...ugh), but still got to wait until after 8:30 to get started on a 4 hour surgery - no explanation, just the usual hurry up and wait.   George got to his room around 5:00. Not until Ed did a bed check count and tell the nurses station that were 7 open beds did the computer catch up---AHHHHH, progress, just ask Facebook what happens when computers can't keep up.   Back to George---but for the half a dozen one inch scars, a 7" here to there and a 3" on the left side, he is as good as new---not going to be a greased ab underwear model, but could do public service advertising for what happens in a knife fight...he will be the one without tats.  With "take down" you get to stay in the hospital to see if the pipes work, which take about 5-6 days, but you are just sitting around, doing nothing, waiting for the next meal. Not even the surgeon comes by, it is the lowly resident making rounds before 6:00 am that gets the call.   I could write a book on what was on the menu card for George, and what should not be consumed by a post "take down" patients---cheeseburgers and turnip greens should not have been on his list, but were.    He even knew enough to stay away from those.  Obviously with 7 empty bed, they wanted to make sure they could keep them filled.  Good Grief.    While the replumb will take some time to heal, we all hope that this will be the beginning of a new chapter in George's life...a new normal.  George is probably one of the bravest people I know---his normal and what each of us consider normal are not even in the same book, much less the same page.  He tries everyday to make lemonade out the the lemons he has been given, some days it is really hard--if not impossible.  He treats each day with a smile, complains little, and is probably one of the most kindest and gentlest souls in the world.  George is my hero, always has been, and always will be.

On another totally selfish almost normal front, we had the most normal weekend last week (funny how long ago that seems after a week of hospital time) we have had in almost six months. Friends of ours have purchased a house down on the Bay, near Kemah. For about ten years prior to Hurricane Ike, Ed and I along with this same couple would steal several weekends a year to a borrowed bay cottage. These weekends were all about the food, fishin' and friendship...we would sit on the dock of the bay, solving the problems of the world, cooking, playing cards, catching crab and assorted fish, and I ain't gonna lie---have more than the recommended amount of alcoholic beverages--that was more of a guy thing, since us girls were all about world peace and fishin'. We would eat, sleep, fish and laugh ---get sweaty and smelly, then come home on Sunday, a little tanner, a lot more mellow, and with lots higher sodium and cholesterol counts. I know we live on the Lake now, but it is just not the same.  When it your home, there is always something else that needs to be done, laundry, cleans the bird poop off the dock, yard work, housework, paperwork, and then there is the aquatic life---how can you compare catfish, bass and crappie with crabs, trout, redfish, sea snakes, sting rays---and there is always great boat traffic on the bay.  Just sayin'  This time, it was a day trip, down at 9 back at 9...world peace, fishin', crabs and liquid refreshments for the boys were all on the menu. Yeah, I drank water, yet again.     Twelve hours of almost normal---it was pure heaven. It was a taste of what we will return to in 90 days....2 more chemo poisonings, 2 more flamingos, 6 weeks of daily radiation, then, boom---normal.  Thanks Deb and DK reminding us what normal looked like.  

"Accept --- then act.  Whatever the present moment contains, accept it as if you had chosen it...."                                   Eckhart  Tolle

Hi-ho, Hi-ho it is off to chemo, I go....

Okay, this is a new one for me.  I composed this on a clear brain day, meaning sometime on Sunday or Monday, thinking that I would post it before I left for my Tuesday morning treatment.  My blog was missing in action...asked Lauren for technical support, and she could not find it either.  What did I tell you about chemo brain, it is real.  Either I pressed delete or it was eaten by a hungry blogger.

Let's see how my memory is on Nasty Neulasta day, after Treatment #4, 2/3 done, one more pink bird in the yard. Booyah!  Boom!   'Cause this one was pretty cute, if I do say so myself.  You can tell that the creative mind no longer flows (funny that isn't in the side effects sheet, thank goodness I am not writing for a living) when you are being poisoned, it is more of fits and spurts.  This is more in my fairy tale/classics story retelling.  In addition to my nocturnal visits from the chemo ghosts, I have my own posse of Seven Dwarfs...I have no delusions of being Snow White, I am more of Fluffy Bald...with a chemo poison apple every three weeks.  Onco Doctor can be the Huntsman.    Glad we have a big car because the gang follows me everywhere, just glad I don't have to cook and do their laundry, hard pressed to do for the guys that actual live with me.  Let's meet my crazy gang of seven.

There is my favorite, but unfortunately, he is not always around, Doc, he goes with me to all my appointments, helps me make sense of the side effect sheets, and gives me courage to speak up and say no when I think that things are not right, or not for me.  I say that a lot, but it is my body.

Dopey is always around, I suspect that he was the one that hit the delete key on this original post.  I have sticky notes (I call them cookies) all over, or notes of what I have done and when I did them so I don't repeat or screw up what I need to do.  The number of errors that I have (I mean Dopey) made are pretty incredible.  Have caught them with my paper trail, but sometimes lose emails of social engagements, there are saved some where I think.  If we don't show up, don't think we are too ill, figure Dopey hid the email.

Sleepy hangs around far more than I would like.  Sometimes when Dopey is too much, I just follow Sleepy's siren call to the pillow.  If I am lucky, Dopey stays in bed just a little longer, and I can have some clear headedness.

Now for the sets of twins Itchy and Twitchy.  They are quite the pair.  Twitchy just hangs out around my eyes, drying them out, clogging tear ducts, making my eyelids flutter involuntarily.  While Itchy is the real trouble maker, he goes head to foot make sure that my nerve endings are all firing at will.  Hands, feet and top of my head (along with my eyes) get more than enough attention...tingling and itching (see side effect sheets)  Can quiet Itchy down with a dose of benedrayl but then Sleepy and Dopey come out to play.  Boy, decisions, decisions.

Finally, there are Lumpy and Grumpy.  Lumpy only is around from about day 13-21, when my hair can't decided where to fall out or grow.  Ed takes the clippers to what is left, I use creams, then Lumpy comes, and invites Itchy to come up and play.  I have more razor stubble on my side of the bathroom vanity than Ed does on those days.  Good Grief.  Grumpy like Dopey is a constant companion.  He grumbles a lot about everything...out loud, it has been a long journey and this traveler is getting weary.  My next post will be how I am trying to tame my inner grumpy...I know my family will be happy...I am going back to my earlier Attitude is everything...

Until my creative surf is next up, take care of the dwarfs and ghosts in your lives and thanks for your continued support.

A Chemo Carole

Ed is a big Charles Dickens fan...told you he was a book geek..so this is a Pickle Spin on the Dickens' classic A Christmas Carole..you remember the one were Ebenezer is visited by Jacob Marley and a gang of ghosts...well, our story is the ghosts that visit after every chemotherapy treatment.  Can I get a "Bah, Humbug"?  My mother has long said that as you age, you are revisited by illnesses, injuries and weaknesses of your body's past.  After three rounds of chemo, I would say the ghosts of my medical past have revisited me--it is as if the chemo knows your medical history and seeks outs those weak links to exploit.  Ahh, the price you pay for misspent youth.

On my first visitation (chemo treatment)--the ghost of Neulasta, I was greeted by all my old back, hip (structural issues) and joint issues, with a side order of tooth and foot problems.  Good grief---I have spent a lifetime learning how to care for these back and body problems, without out massive doses of drugs or surgical intervention.  Do I hear an "Ommmm-lotus position"?  I don't wear cute shoes---nothing about them are cute--they are practical, borderline homely--can't stand foot pain.  I have forsaken stilettos, strappy sandals, and ballet flats, for shoes with structural integrity (read: big and boaty-ugly), I drew the line at shoe inserts and night splints, but have had the torturous steroid shot in the bottom of my foot more than a few times (#7 on my all time most painful medical treatment)---just so my plantar fascitis would stay away.  Same for tooth issues--in my childhood I had some pretty serious accidents with diving boards that resulted in tooth issues/repairs/braces. And how am I repaid---with a visit from the ghost---not a pretty Disney style one but more of the ugly night of the living dead one....guess that is why I lost my hair.

My second visitation was more of a chorus of ghosts, none real frightening or overly painful, just a presence that you are aware---it is your body trying to do damage control over the poisoning that is taking place.   As you lie still at night, (yeah, after midnight, with your idle hands) you can feel/hear everything--like an alien movie.  These ghosts invite the Neulasta ghost back to party.  Couple of days of 24/7 partying with the ghosts, the fatigue factor sets in.  I've been tired before, but nothing like this...the ghosts are trashing the place, my blood work looks like a Keno board in Vegas--red and black numbers all lit up.  

After my most recent visitation, a real ugly ghost from my past has resurfaced.  This one has been there since the first night of treatment, but I brushed it off as a chemo headache.  After 11 weeks, I still have it.  I was concerned, since I have had this headache before---it almost robbed me of eyesight when the kids were small.  Parts of the treatment still ranks #1 on my all time most painful medical treatments...don't even ask.    I asked my Onco Doctor before my treatments if this was going to be a problem....after I explained what the condition was.  Yikes!  Since it wasn't his 10 inches of my body, he didn't know.  Double Yikes!  Hello, research, phone a Doctor friend.... So, I decided after my third, sixth and completion of radiation I would again call my own plays, and go to Eye Doctor.  Did that, I was right, chemo is a little bit of a problem for my optic nerves.  He increased a medication I have taken for 25 years in small dose, to a 7x larger dose---great, new ghost friends.  He also suggested I see the Wizard of Tang (Dr. Rosa Tang - Neuro Opthamologist) (Have been seeing her for this problem since she was just a Dr.--she is now an MD, MPH, MBA and any other letters you want to add behind her name---talk about not having idle hands) ---my personal Ghostbuster...4 hours and 6-10 tests later (her appointment train runs on time, to the minute---she said it would take 4 hours)  Best test of the day was the brain wave, eye response one--my brain responses extremely quickly (like a 40 year old the cute little tech said) to little red strings on moving checker boards--woohoo!  Ghosts in the house, but brain still works ---go team!  Made my Monday for sure.   Before I ever got home she had contacted Onco Doctor and discussed changing my medications---would love if she said I had to stop after 4 (typical conservative) treatments instead of the more aggressive 6.  But I will have to wait until Friday to see how many more visits of ghosts I will have to endure. Stay tune for more ghostly updates.  

While I am hoping for an early Christmas, I will close with the words of Tiny Tim, "God bless us, everyone." 

  

It's Limbo time!

If you are fifty something or older, you recognize that phrase.  It was the go to birthday party game, ice skate or roller skate game that was played in the 1950-60's.  It is our Chicken Dance, Hokey Pokey, Macarena---it was just what you did at social gatherings, that and Pin the tail on the Donkey--and the more risque--Spin the Bottle when were teenagers.      The game was fairly simple---based on a Caribbean game---there was a long stick, with either two adults holding up either side or a pair of game post with notches that started at about 3-1/2 feet above the ground, going all the way down to a foot (or less) of the floor.  At the 3-1/2 foot height, everyone could limbo (get under the stick without touching it or knocking it off) under, each turn the stick was dropped another 6 inches, by the end of the game only the slightest of framed (read:all elbows and knees) or most limber (read: the rink rat on skates that could roll or glide under stick with one leg extended) would be left.  I had no love for this game, I knew with certainty that I would be out fairly soon after the first drop of the stick---my body didn't bend that way, and my skating skills were just above beginner status--being able to go backwards was my biggest trick.  After knocking the stick off,  I would then be sitting there for the duration watching the others take their turns, cheering them along, and watching while they ultimately won the prize.  Well, 50 or so years later, I still don't like the game.  I hate being in limbo, yet that is what this year has felt like so far.  Sitting on the sidelines watching everyone else go under the limbo pole.

A couple of fellow travelers on the road have shared that you will lose a year of your life (and your hair) while you are battling/having treatment/ doing the cancer thing.  Yeah, it is like that but it is more than losing---it is a state of limbo...sitting on the sidelines, waiting, watching, but not able to take part.  Since nothing is certain when it comes to your chemo/radiation treatments(including how long each appointment is, when it is and with MDA--- where it is)---you can make some plans, but are never sure whether you will be able to follow through.  You can say "yes" to social commitments, but you don't know until you are ready to walk out the door if you will be able to make it.  When you get there, you realize that people really don't want to know all about what is going on in Medi Life (and our family could so over share at this point)---because, I am dealing with what a lot of people fear most--cancer.   Sideline-limbo... There are plenty of things that I could do around the house--- planning our next  travel adventure, my photo projects, a couple of writing projects (nah, not a novel, more of a family tree thing), ancestry.com, read a book, clean out and organize a couple of things that have begged attention for sometime---but I find it hard to get started.  This is the close as you are going to get me to a pity party--a limbo party... I am goal oriented, so the land of limbo is so hard for me.  Truth be known, I think I have a little more male hard wiring than female --must be why my estrogen went rogue--- lack of anything to do.  I am a problem solver, not a sideline sitter. However, unlike most of the male species,  I have a hard time with the "nothing box" and am more globally wired, so I will be doing lunch with ladies the next two weeks, and babysitting Eli and Cali....take that you stupid limbo stick.   (Your laughter homework of the day is at www.youtube.com/watch?v=gjnLLw5BTmc--remember laughter is the best medicine!  Since it seems to take a lot of medicine for me of late, I did several courses, it explained a lot---it is this generations version of Men are from Mars and Women are from Venus---)...take two and call me for lunch....

It is all a matter of Taste (buds, that is)

I have been warned...in all my readings on the side effects of chemo, and in my conversations with other chemo veterans...foods might taste different during treatments.  MD Anderson's literature suggests not eat your favorite foods a couple of days before or after your treatment, unless you want have an aversion to that food after your treatment is done. I don't think a couple of days will do it....  After 3 treatments, I can say that the warnings are correct.  Most things you eat will have a new flavor profile...some good some not so good...but for the most part different than you remember....with and idle mind, and time on my hands I decided to snoop around (yeah, nose/smell functions are slightly altered, too).

My lofty (read: wiki) research (and your Pickle lesson of the day) says that we have 5 taste bud types --- bitter (back of your tongue), Sour (side), Salty and Sweet (front) and Umani (a savory pleasant taste--probably made up by the Japanese to sell more soy sauce).  Children have strong taste buds that make them a little more finicky about food, as we age the desensitize, so foods that we didn't eat as children, we enjoy as adults.  Further, as we age, the last to go are the sugar taste buds.  I remember clearly at Ed's dad's reception after his funeral, that the 75+ year old attendees were all over the desserts...and there were lots of them.  The Preacher from their church shared with me the "sugar bud" is the last go...that has stuck with me.    Back to my research---your taste buds can change with smoking (red marker issue), medications, injury to your head, chemical exposure, and radiation.  As I see it, I have 3 out of the 5 game changers in my column.  Early on in this journey, I purchased a Cancer Cookbook, to make sure I was coloring in the lines for my new lifestyle.  The opening sections were about suggestions on how to negate the "too" much of one flavor...there were how to tone down bitter, salty, sweet, sour and metallic...nothing on the umani front.  After my now 6 weeks experience into the food related issues, I want to know how to correct my taste buds---of "funky", "off putting", and "gross".

  For example, as any Kingwood resident-past or present---will tell you, if it is Chicken Salad---it has to be Chelsea's--even the best cooks around buy there chicken salad there (Great shower idea--thanks Rebecca, unfrosted donut holes stuffed with C's chicken salad--fried bread with chicken salad in a bite sized morsel---what's not to love)  The other day, after one of our three times a week outing to PT for Ed's knee, to the front of Kingwood, we stopped at Chelsea's and picked up lunch to go.  Ed always has the Super Po' boy with a pint of mustard potato salad (also, better than I make), sandwich cut into four parts (use to be 5 but the bread shrunk---or his appetite increased)---it last him 4 days...been that way since swimming team years (pre-1990).  Me, I am an all chicken salad all the time kinda gal---while I vary the vehicle--po' boy, croissant,whole wheat, or main with side salad combo plate---except the one time when a pretty young Lauren remembered that I liked some kinda of salad at Chelseas, and liked mustard---I got a shrimp salad, with mustard on croissant---guess that would be the umani taste bud thing, but she got an "A" for effort.  My main salad with side fruit salad was not the same as I remembered.  Plain fruit salad was fine (guess that would be the sugar buds being happy) but the chicken salad was just not the same.  Even had Ed taste it, he thought I was slipping a couple of gears.  Ate the chicken salad anyway...not the yummy, but it was lunch. ;(.

On to other food observations---can not do on anything with tomato sauces or salsas, but still like fresh cut tomatoes--go figure.  Bread and pasta---not so much so--big bonus there---but like flour tortillas---thin is in.  Meats--a little goes a long way, fish is good, shellfish I can taste the iodine in it--there is the funky factor.  Beverages - icy cold water with lemon, or without, hot or cold fruit flavored green tea, coffee with half and half---Starbucks of Nepresso if you please--nothing carbonated (off putting) Vegetables - rice and potatoes, particularly potatoes --must need potassium---I eat the dark colored one just because I am suppose to---Salads --my pre-treatment go to--vinegar based dressings=gross, love cold and creamy dressings.  Eggs, grits, cheese, guacamole/avocado, yogurt--plain, non fat or flavored---are at the top of my food chain list.  Fruits (bananas are #1), nuts, twigs - also top of the list.  See the potassium curve there--i certain do.    Based on my research and personal observations, I have stayed away from the dessert, ice cream, froyo---will cop to an not too infrequent piece of chocolate, but that is it.  Sister Kathy in trying to put a positive spin on chemo remarked that I would probably lose lots of weight while undergoing chemo.  Not so fast, with this regiment, literature and conversation---it all talks about weight gain during treatment.  Hello, I do not want to upgrade my fluffy status to Michelin woMan.  My Onco Doctor said 5-40 lbs (in 24 weeks, please) has been his experience.  However, I think my fluffy status has prevented me from looking like the walking zombies that I see at chemo---I had a little larger reserve tank to work off of---finally a upside to fluffy.  It takes a lot to poison an elephant.    The bottom line, like the Baptist Preacher told me, the sweet buds are the last to go.  If you are looking for something that satisfy and makes you feel good (and I am sooo an emotional eater), sweets and carbs are the way to go...particularly when you add a side order of steroids to the poison party called chemotherapy.   From my lips to my hips...hanging firm, learning to eat to live, not live to eat...just wished I had the same will power and could add a little more exercise---maybe this 21 days I will get there. 

Flamingo/Round 3 update---I am now half way finished with chemo!  The third flamingo took up her spot in the yard yesterday, almost had to put a special bow around her neck---it was a long day---10 hours door to door...and not of my doing (we planned on 6).  We left at 7:00 AM, for 8:15 appointments--with chemo to start after Onco Dr. saw me, blessed my blood work and sent the orders to the infusion clinic---guess who forget to send the orders---and I lost my infusion slot until well after noon time.  Hello, control stick, blood pressure, Ed's knees' issues, steam was coming out of my ears---and I am so not the sit and take it kinda of person.  Ed kept reminding me to not shoot the messengers---so, I didn't go postal, but requested, somewhat politely, a meeting with Patient Care Advocate and Nursing Care Chief to suggest that they review their communication and procedures, inasmuch as this is the 2nd time I have had issues, and was obviously not alone, since there were others grumbling about the same thing in the waiting room. Being popular/brand name/#1 status in the 'burbs has some disadvantages.  It is not nice to stress out chemo patients---on treatment days. Hope the squeaky wheel gets the grease next time---I am sure there are notes or pictures on my chart---they have color coded charts for what type of treatment you are there for---if I see a black chart next time, I'll know my message was heard---black for witch's hat.   Betcha I won't have to wait for my Nasty Neulasta shot today... 

This ain't my first Rodeo

In Houston, we have a choice when it comes to top rated hospitals and medical facilities.  We are talking world class hospitals, with advanced cutting edge treatments, and state of the art tinker toys.  I can remember when my niece, Dr. Lindsay,  was visiting medical schools here, she was impressed that a disease or condition didn't have a floor in a hospital, nor a wing, but an entire complex devoted to care, training and research.   As an almost native Houstonian (anything in our little melting pot over 25 years counts), you take that for granted, and really never think about it, until you need it.  Boy--we have need it this year---and we have gotten our frequent patient card punched (mileage available with deductible payments), just ask United Healthcare--we are in the BOGO surgical program.  We will use the last 90 days of the year for any medical clean up--deductibles are all paid in full--- Sure, the drive from the 'burbs is a pain, and traffic stinks, but there are people that drive/fly/take the Greyhound to receive treatment at one of our hospitals. Staying in area hotels for days or weeks at a time..so quit griping.   Over the last couple of months, I have spent my fair share of time at several of these well rated institutions.  Idle minds kinda of thing---thought you would like my opinion---kinda like the Medical Mystery Shopper---of non-treatment related items.  These are not the things that US News and World Reports ranks, but musings of a chemo brain.

Surgically waiting areas are for family members  Face it, I am old school when it comes to hospitals, I liked visiting hours, no children under 12 years old rules, nurses with white stockings and pointy little hats, but what do I know.   St L's Barney purple sign clearly states "1" family member per patients. Pickle's color in the lines, I am the "1" for Eddie...I guess higher level math skills escaped everyone else in the place. Four small children do not count as "1" or "2" (as in 4 1/2 pints equal 2)...particularly when they are running and trying to pour hot coffee for themselves. Further, just because it is around Easter time, and families are visiting, these areas are not party rooms. This is for the large family that snagged the cart and brought up groceries and sandwich plates and set up a buffet line with chairs...really....they could have had an Easter egg hunt for the 4 small children.   Just because those rules aren't posted doesn't mean than don't exist... After visiting the various surgical waiting areas, "The" Methodist Hospital (not to be confused with "A" Methodist hospital) has the best facilities. More comfortable seating, convenient to Starbucks,cafeteria, gift shop, the front door, locked crap closet (to hold all the junk you are to wag for hours on end) and a specialty coffee and tea bar. Even the street person that crashed the place thought it was great, he stayed for several cups of hospitality.

The sign that indicates "no cell phone usage" ...this means no...hospitals should have a cone of silence, and knock out cell signals...of course, AT&T doesn't work in parts of St. Luke's, so I did not have a problem. Just because you have a small phone doesn't mean you have to speak loudly to be heard. Patient's privacy act rules do not exist. I can look at everyone in the room and tell you what condition their loved one had before surgery and what was the outcome of said surgery...additionally what time you got here, where you parked, what your waking blood sugar was and which pills you have had today.  At least the younger generations text, tweet, post to Facebook (with videos)....progress?  Like I said, I am not sure why the hospitals are worried about privacy issues.

Hospital food for families--- MD Anderson wins hands down...Methodist is okay, St. Luke's has a cafeteria--kinda like the one you remember from high school (bleh), but the MickeyD's on first gets the lion's share of the traffic, guess they are making sure they have patients for the Texas Heart institute. Eddie wanted me to leave him some cash for a Big Mac and fries if he did not like what was on the tray at meal time. Not sure who was going to make the run for him...I did not leave enough cash for bribes.

Parking--Loser is MD Anderson St Luke's at the Woodlands.  While they are building parking to catch up, the employees and construction workers get first dibs on the space around the building, you need just about the same amount of time to get there as you do to look for parking...but it free...you get what you pay for.(User tip - Best keep secret, the valet parking is free, except for the tip..but Eddie and I like to hold the car control stick)    Methodist is always full and beware of the flood gates on a rainy day, it can cause a three hour wait for your car...be there done that and it still is $14 a day. St. Luke's is great, but at 5:00 AM there are just not that many folks in line. MD Anderson is good, but make sure where you need to go, the campus is huge, you can do you mile walk just getting to the elevator bank, at least they use an airport style golf cart to move you from one huge building to another.  User tip---if you are at one of the downtown facilities and plan on spending more than 5 hours - use the valet - it is the same as the parking garage will cost you.

Compassion quotient - Probably St. Luke's by a nose over Methodist. Doesn't hurt that the Chaplain in Resident at St Luke's knows Ed from Jr. High and High School, know Lauren and Drew, along with Lauren's in-laws ..and 'da Bishop is a Camp Allen alum (there is that FOL thing, again) but there is a level of care on the part of the entire staff present that has nothing to do with your body.

Facilities - MD Anderson, period. Some 5 stars hotels should be this nice. Waterfalls, Green spaces, artwork---plus multiple state of the art toys for treatment. Grateful wealthy cancer survivors and #1 in the world rankings don't hurt either...Methodist tries hard, with a beautiful lobby, grand piano, fountains.  Poor St. Luke's---It is more like a hallway at the high school, but who is spending time in the grand lobby anyway.

Public Bathrooms - get your cootie shots, friends. If you want to know why there are diseases spread in hospital settings, look no farther than the restrooms. Good grief...forget white glove clean, just put a rubber glove dispenser outside each. On one early morning arrival to a basement level hospital restroom, revealed a street person leaving this hospital's bathroom shaking his head and saying it was nasty. Okay, that is bad.  While I don't consider myself a total germ-o-phob, I have been to service station bathroom/visitor center bathrooms that are cleaner than those in the hospital.  Since I turned on the lights in the surgical waiting room at St. Luke's, I did see it being cleaned...and since I was still there 9 hours later (Eddie was out of surgery by 8:30, recover and room ready by 10:00---stacked up in recovery waiting for a cleaned (?) room on 18th floor--) There were at least 100 people (and some had a really big lunch) in that space over those 9 hours--2 holes--one female one male---no one came by to do anything---the uck factor was off the scale.

Patients' report - Eddie (Code Purple--and his left leg is just that) is doing well and surprisingly compliant with the Doctor's orders, but bored of my company---all good things, George (Code Green) has a countdown clock on his phone and ipad for his May 22nd surgery--and is doing great, Krazy Karen (Code Pink) - a little weary from the past week's activities but looking forward to Tuesday's 3rd round of chemo so I can put one more flamingo in the yard and proclaim that I am half way done with chemo.  As always, we are thankful for your prayers and well wishes.

Did the bunny get his hop back?

Gee, time flies when you are having fun.  When I last posted we were preparing for Ed's knee surgery on Thursday.  He spent Wednesday preparing at St. Luke's Downtown, while I got the plum assignment of caring for Eli while both Lauren and Drew had to both be at work all day.  Lucky me...poor Eddie.   

When Ed and I first contemplated having his left knee replaced while I was still in treatment, we weren't completely blind (stupid, foolish, nuts---yeah, people have used those words, too).  After all, he had had both knees 'scoped a couple of years back...we knew that there would be issues with mobility, pain, restless nights plus a hospital stay.  Eddie had said that he wanted to be dropped off at the hospital on Thursday and picked up at noon on Easter Sunday---tough love style.  Right, he talks a good game, but I knew that a certain amount of butt powdering, not to mention step and fetch would be required at the hospital. Yes, there are nurses, but it more about anticipating the need and immediate attention, than push the button and wait for someone to respond.    Eddie has never been a patience person..and elephant tranquilizer drugs did not make him any more easy going.   So, we started with 15 hours of Nurse Karen Ratchet on Thursday, decreasing daily to 8, 6 then 3 hours before discharge.   I don't know if my nifty do-rags qualify for nursing caps--but I certainly fit in with the surgical teams.  

We have been home since Sunday afternoon. It was like bringing an infant home from the hospital...lots of equipment and  that being is totally helpless.   Despite drugs and nausea, he managed to eat his beloved Masters' egg salad sandwiches, and see the match.  Love Bubba golf---I always cheer for the underdog. Since then Ed has graduated to toddler stage---toddling, but still has to be watched--lots.  Still lots of step and fetch it, I think I have worked up to 1 hour of leaving him alone.  There is a lot of supervision when you have a 60+ toddler, with a strong will.  All that being said, 'da boy has surprised me---maybe he wanted to prove me wrong.  Whatever his motivation--I'll take it. Since we started thinking about knee replacement surgery,  I have gently reminded (nagged, lectured, worried the crap out of him--those would be terms that come to his mind) him -- on a not infrequent basis--that aggressive/repetitive rehab after the replacement was key to regaining his "hop".  He has been a man on a mission. In the hospital--he would double up on the bed exercises, doing them twice an hour, he would push harder with the therapist told him was necessary.  He has been to therapy on Monday  (it is 3 times a week) --with yet another of Lauren's high school chums, Megan.  (Interesting how this all has worked---these F.O.L. (Friends of Lauren's) caregivers seem determined to get her mom and dad back on their feet).  If twice daily is the minimum number of times, he is striving for four times a day.  I am proud of him...the bunny wants his hop back...and I think he will get it...in record time.   We will see when knee #2 fits into the rotation...but he is determined that we finish our medical challenges together by Labor Day.  

Let me just say a little about our toy/medical equipment box --- the list starts with colorful balls, strap on weights, belts/straps/bands, hosiery, hip and ankle wedges---sounds more like something really kinky or a home gym gone wild--then you get to the walker, lift chair, heating pads, ice bags and 6 sizes of ace bandages part of the inventory and things get decidedly less fun and more, well, old.  Right now all of our toys are everywhere, but just as soon as we can, we are going to put them away, and pretend they are not in the closet.  'Cos as my mother (and Bette Davis) says, "Growing old ain't for sissies"... Secret is to keep your mind young, your body will follow.  

Shhhh! Don't tell, it's a secret!

I've got a secret...Ed has no idea that I am blogging.  Or at least I don't think he does.  I like it that way.  You see Eddie is a frustrated English teacher, complete with red ink pen and ruler, or at the very least a book editor looking for the next prize winning novelist. (Note:  I did not say he was looking for the next John Grisham or James Patterson---he likes extremely well written books)  There is not a book that he won't read cover to cover, even if it is boring beyond belief.  On the other hand, if you don't have me in the first 25 pages with murder or intigue, I am so on to the next Kindle purchase.  He collects books, and we have have 4 rooms of bookcases to prove it.  When we travel, he has been known to use 10 pounds of his 50 pounds luggage limit on hardback books....me, I am a love'em or leave it kinda girl, I read junk---National Enquirer, People, pop fiction, Reader's Digest---all the classics.  So, that brings us to the English Teacher Eddie.  Being so well read, with a real command of the english language, large vocabulary and all, he is quite the critic.  When we were dating---he was the older man-law clerk--I was the college senior--with but a summer class in Freshman English Comp II to complete to graduate (yes, I procrastinated on that one), he would correct my love letters (remember phone calls were expensive--there was snail mail and that was it) in red pen and return them to me. 36 years later, he still has a red pen.  I am afraid he might make me diagram the sentences in my blog should he find out.  At the very least he would offer grammar lessons, SAT vocabulary words, ideas---let's just be honest, he would hijack the project.  And frankly, blogs are not novels, they are random thoughts put down for friends.  I like it that way.  The other thing about this little blog is that you can be a fly on the wall..

A fly, wasn't last week about bugs...windshields, etc.  Trust me,  you so want to be a fly.  You see, Mr. Eddie is getting his left knee replaced on Thursday.  So, his 90 day adventure will begin on Thursday at St. Luke's hospital, downtown.  He has been flirting with this for a couple of years, but has been on a steady downhill run since November.  After 90 days with everyone else's medical drama, he decided to jump into the deep end and get his first of two replacements done.  We have worked this out.  Timing is everything-- left knee first so he can drive, my good days, George's time off for Easter, his next surgery--- he even threw down the "chemo/cancer" card so the Orthopedic doctor would schedule the surgery on a non-knee replacement day. The only thing that is not covered is Eddie is an awful patient, and regards all of the doctor's orders as suggestions.  Can't wait.  Team Pickle has worked out the hospital coverage so that I don't spend to much time in Cootie Central. I don't think that chemo is the same as a fifth grade cootie shot.   (I am so going to write a blog about the cleaniness of the area 5 star hospitals public bathrooms and waiting areas--uck!--where is Marvin Z when you need him)  He will be pretty much on his own with the nurse's call button and morphine pump.  Dr. S has told him that his only limitation is how hard he is willing to work---the knee can't be hurt...and number 2 replacement depends on how quickly he gains mobility back in knee #1.  "Frankie", the motorized lift chair is back home after spending the holidays and winter with Lauren's father-in-law, Tom.  (Frankie as in Frankenstein)  We have refilled all drug prescriptions and have the PT bands ready and waiting.  This time next Monday, I will know if there is a new bug in town...

Speaking of bugs, my Apple (as in IMac, Ipad, email account, picture account, etc.) has a worm in it.  Over the last couple of months, there have been warnings that I needed to upgrade to iCloud.  So, I did..made that phone call, did as instructed, done, finish, right?  Since then there have been various issues that have come to my attention that make me quite sure that Apple doesn't like users that don't keep purchasing their latest wiz bang product, service or upgrade.  (Read--older cheap consumers)   When I got the message in my mac email account yesterday that my email was no longer supported---what I am paid until June, and you said the iCloud was free?  I figured it was an April Fool's joke....so I called my resident tech geek--George--my ipad and computer have choked three times trying to make the change to iCloud. So, if you get returned email, try my old DSL account that I have had since Al Gore invented the internet-gherkin@pdq.net...I may have to trade in my apple account for a pear or banana...time will tell.   Will let you know....

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.