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....