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.