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."