A New Year, A New Attitude, A New Year’s Resolution

IMG_2501I can’t believe it!  It’s 2018, Steven is still cancer-free and I think I might be starting to like people again.  I’m definitely not grouchy all the time anymore, and when I see an idiot out in public, I can actually feel a little compassion for the poor wanker rather than getting pissed off that he/she broke out of protective custody to screw up my world!

I don’t know if it’s the relaxation of retirement, the joy in being G’s Nana and knowing that in April when he gets promoted to “Big Brother” I’ll also have another little boy-chick to call me Nana…or if it’s just the happiness in IMG_2724another year where Steven doesn’t have cancer.  Whatever it is, it’s making me feel like I did when I was in my 20s.  I feel hope and anticipation and expectation of good things.  WTF?  When did I get so goopy?  Did it happen all at once, or was it a gradual ripening into a sweet little old lady who neither looks or feels old? Don’t know, don’t care!  I’m just liking it.

Not having to go to a stressful job where other people’s drama gets my panties in a wad is awesome.  That part of retirement is the bomb.  I highly recommend it!  The being on a budget thing isn’t my cup of tea, but I’m doing it because everything else is so great.  I spend my days with Steven and we really enjoy the company of each other.  After so many years of me trying to work hard enough to keep our insurance and earn enough to pay all the co-pays and out of pocket expenses of before, during and after lymphoma treatments of every variety, it’s great to have him healthy.  And even better that I get to be around him to enjoy it for a change.

STEVEN SELFIE FAVORITEAlso knowing that the world is now to the point that treatments for blood cancers are quickly approaching the cure is a huge relief.  Even though we try not to expect anything bad, we are realists and know that shit happens.  So even after the stem cell transplant, we have anxiously awaited the coming of the cure.  And just this morning we saw a great story on Fox Business Channel about the advances the Celgene company has made in a drug to be released mid-2018 that will be a lifesaver for blood cancer patients.  So help is on the way, and advancements are coming to make treatment less life threatening and more effective.  If that isn’t hopeful new for the new year, I don’t know what is.  Now that I know Steven no longer has an expiration date stamped on his ass, I’m planning on having him around for a long time.  And do I have a “Honey-Do” list for him!

So in case you can’t tell, I kinda made a New Year’s resolution this year.  It was really fullsizeoutput_6c8simple.  Be nice.  That’s it…just be nice.  Don’t be a dick, don’t bust asses for fun and profit, don’t make things harder than they have to be and just get along.  That all falls very non-specifically under “Be Nice” yet without so much detail that I gave up on January 2. And it takes all pressure off everyone else in my world.  If I resolved to “be nice to every asshole” you would know that when I treat you nicely that meant I think you are an asshole.  If I’m nice to everyone, we all win.  Who would of thunk it?

I’m finding with the simple act of being nice, potential problems are smoothing themselves out.  No negativity to be attracted here.  Because I realized that a resolution is more than one thing.  It is defined as a firm action to do or not do something.  As in DO be nice,  DO NOT be a dick.  But it also means the action of solving a dispute, problem or contentious matter.  And it seems that in my case if I do one, I get the other.  And what retiree on a budget doesn’t like a BOGO?

IMG_2754So today I’m putting in Day 3 of making Mango Chutney.  Why?  Because Steven likes it (as do I) and because I have the time and because I can.  Sunday I peeled cut and chopped fruit for hours and mixed up the potion to steep it all in two huge industrial, cafeteria size Hellman’s Mayo jars.  Yesterday was shaking and moving the jars to make sure the flavors all married and brewed.  And today is the final step of chopping and adding the rest of the ingredients and then cooking off the gallon of vinegar until I’m left with the tangy, sweet and spicy chutney.  And for the first time in years it’s a joy.  Because I have the time, and the energy and the right attitude to make this monster vat of goodness.  And it feels nice…just like me!IMG_2759

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All Dressed Up with No Place to Go

IMG_2101The laundry is all done, the fridge is almost empty, the minor details of life are all on auto-pay and I’m ready for our little mini vacation.  Steven has been literally begging me for months to go on a vacation to the mountains.  I’ve tried to talk him out of it a hundred times.  He wanted to go to Gatlinburg, Tennessee for some unknown reason.  I could give a rat’s ass about most of Tennessee.  I used to work regularly at a few comedy clubs in Tennessee back image95496121in the day and I have bad memories of drunk women incoherently heckling and simultaneously projectile vomiting.  It seems needless to say that I have no desire to visit Tennessee.  My shoes cringe at the thought!  So it’s been painful for me to be hammered for months about getting away for this idyllic holiday to a place I regard as a little slice of hell.

y4m58PGrXQCRrNBNDGdnPpNVCIn5Hrl6U3ieE-AminrVDxOOdBkDZaP2JxnqLf3fOZpI4eBBzn1QPgEsvagr9Cl9mRDiEu6Dfbm4zM7KXtX-B9UcQmdt-vQnKWS_vU8to2aavmJ2fjASWzjqW2bXSKfs63XYfl8gbUmn6m2gyWqcrMrHVvtwxWDDXQuite a few weeks ago I was reading Yahoo News and a click lead to another click which put me on a page about the big Hemlock Festival this weekend in Dahlonega, Georgia.  For whatever reason, it seemed like fun.  A festival celebrating a tree could not be more innocuous.  I could really get into a perfect low-key getaway.  The location seemed perfect as well.  It’s just the other side of the Blue Ridge Mountains that had become Steven’s new fixation.  It was quite a few hours shorter in drive time than Tennessee…and as far as I knew, no projectile vomiting.  So I summoned Steven to Molly’s Porch for a quick family meeting and vacation plans were set in motion.  I requested official time off from Nana duty, and Steven quickly went about making reservations in a pet-friendly hotel and began his due diligence in compiling the historical, meteorological and socio-economic background check on the area.  He LOVES. LOVES, LOVES the planning part of the vacation experience.

Compliments of Steven,  I’ve been getting local temperature and other oddball tidbits of fullsizeoutput_60eDahlonega, Georgia factoids sent to my phone about 4-5 times a week for the past month.  I’ve also been getting snapshots of a live camera somewhere in the town showing me the state of the leaves on the trees, so I can keep up with the fall foliage color change…BTW- it hasn’t happened yet.  I’ve also received text updates from Steven noting celebrities who hail from that area so I can keep my eyes peeled while walking around town lest I trip on a famous person.  And I even got an email from him about the state of the ground cover where the festival is held because the out of town festival is in a grassy area that might be muddy if the weather is too wet prior to Hemlock weekend.   We are prepared for weather dips into the 30s with layers of clothing to protect our delicate Florida anatomy (I use the singular “anatomy” because I’m always warm and Molly comes standard wearing a coat so really, we’re talking about Steven…THE ONLY ONE WHO WANTS TO GO TO THE FUCKING MOUNTAINS!!!)

IMG_2313Nevertheless, we are ready to Rock and Roll.  Today is Wednesday.  I have a little Nana duty later on today and then tomorrow I have the day to get our stuff together for a nice, leisurely trip to…NO WHERE.  Because I always forget that Steven loves to plan vacations but has a hard time going on vacations.  No.  Steven loves to plan trips but has a hard time going on trips.  No.  Steven loves to plan leaving the house but has a hard time leaving the house.  YES!  That’s it!  That’s exactly it.  This morning he informed me he really, really, really doesn’t want to go.

Welcome back to one of the recurring themes in our life after cancer, lymphoma, a stem FullSizeRendercell transplant, chemotherapy and all of those life changing things that Steven has had to endure.  The aftermath of the physical and mental trauma that now haunt Steven cause and so much anxiety stress for him and in turn for me.  It’s such a shame.  We have time and a little spare change to do a few things, but a lot of times, I just can’t get him out the door.  The world is a scary place and when one feels weak and vulnerable, it’s even scarier.  And that’s the bottom line.  Home is safe DSC_0895and secure.  His needs are all met.  His food and beverage are all readily available whenever he wants without any fuss or bother or wait.  If he’s tired he has multiple areas to rest his weary bones.  If he’s feeling anxious, he can take a pill and chill out in a cozy familiar place, or he can go socialize in the big bold world that is right outside our community where home is a blink away if his mood changes and he needs to get back.  Therein lies the distinction between vacation and home.  Vacation is just too far away.

IMG_1846So my job, for now, is to make every day at home like a vacation.  Well, hell…for me it already is.  I don’t have to go to work every day.  I get to see Lil’ G A LOT!  I”m finally spending quality time with Steven in person instead of texting and calling all day from an office or car.  I feel like I’ve won the lottery.  Steven’s life is a vacation, too.  He just doesn’t know it.  He no longer has chores to do in the garden or garage or attic or anywhere that involves tools or safety glasses or power tools.  His daily responsibilities are so minimal that he actually puts in MORE effort when we stay in a hotel.  But he doesn’t see that.  So periodically he decides he needs a vacation and I guess all I have to do to make him happy is to just say, “Yes” to all his vacation plans.  Let him enjoy the planning that he loves so much and just know that we’re not going to go.  Reserve away big guy!  From now on, I say, “Yes!” to going no where!

 

 

It’s Good to Be Back

IMG_2007
OK…I’m going to try this. It’s been so long since I posted anything that I’m curious about my ability to write a cohesive post. I thought I’d just start with a topic, but then I decided that playing catch-up was probably in order for my few faithful readers. So for today, let me nutshell this last hiatus and then next time I can just start blabbering.

The book I bragged about is still in my head. A decent amount ended up on paper but I let myself get tangled in a big messy knot after talking with an old comedian friend about writing the book. He’s written a few and suggested a book for me to read about writing a book. For future reference this is what one does (or what I do) when one feels insecure about a new thing. So I bought the book and began to read. Big mistake! Both he and the alleged instructional book suggested IMG_1688within the first few pages that “book characters have way more sex than you have in real life.” Neither my old acquaintance nor the recommended book have any concept of the whole lymphoma thing, a stem cell transplant or any life altering events that are attached. We’ve had way more puke that you have in real life, which is hardly a good parallel worth expanding upon! The book fell to the wayside as did the old comedian who was going to call me every week to cheerlead but stopped after the initial “RAH”. For future reference, the book is not dead just in an induced coma for now.

img_1268Then there was the broken foot that happened on the job, which lead to my surprise phone call from the employer suggesting we “separate” during my recovery. That phone call from him lead to a phone call by me to a lawyer who then requested that I refrain from any comments in written form about said employer, accident, injury or anything that I might think was funny. I learned that you can be let go from a job while out on Workers Comp, so allow me to suggest that you write that down as something to be remembered in your life. NO one I know thought it was legal. Unfortunately, the only thing my silence earned me was a foot that was semi-healed “as good as it would get at my age.” Which, by the way, is only worth $9000 in settlement money. So if you’re gonna break something at work, do it before you hit your 60’s!  After that, the settlement is short lived and the limp is forever.

LIVING ROOM 2During the time I was unable to walk, Steven and I finally came to grips with the fact that our house was way too much for either of us to handle alone. I have been struggling for years during his down times and chemo with upkeep, barely keeping the dust from overtaking the overflowing laundry basket. Unfortunately the stem cell transplant left him with way less stamina than ever before and he MASTER BATH 1couldn’t pick up the slack at all. So we finally had that tough conversation about selling the house and finding a more manageable situation. Being the stubborn designer that I am, I fought him tooth and nail on it at first. That house finally had my artistic touch on two incredibly designed spa bathrooms of my dreams and I’d been waiting for 20 years to start on the blank canvas known as the kitchen. But now with no design center MASTER BATH 2connections and no real job on the horizon for gimpy old me, Steven finally convinced me that the project needed to be turned over to someone willing to dump a pile of cash into the place and unfortunately that just was not US. Hobbling in to interviews like Grandpappy Amos (Google it pre-Baby Boomers) did not net me a job so it was time to sell.

 

Again I was requested to keep my fingers off the keyboard and my pie hole shut as we HALL BATH 1went through the selling process. To further add insult to injury, I began the long, hard, emotional task of going through all our earthly possessions and weeding out the things would we would NOT be able to take with us to our new smaller abode. We found a lovely luxury apartment in Orlando, meaning we were giving up our beach life. Steven was smart enough to know that THE ONE AND ONLY THING that would make me go peacefully was finding a place less than 8 miles from Alexis’s house. And on February 23, 2017 just two weeks shy of 20 years in that house, we loaded up the truck and moved to the big city.

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So we have a new life. We also have a new family member. We decided that we missed fullsizeoutput_75having a canine daughter and since we were moving, why not get one to make sure we had any house breaking worked out on the old carpet. No IMG_1870judgements, please. They buyer was planning on ripping out the carpets and his realtor was such a bitch that is was the small amount of pleasure necessary to get me through it. Besides, The Unsinkable Molly Brown-Dog was a 2 year old rescue who came house broken and a little psychotic, so she fits in just great. You can check her out on Face Book to get a taste of her antics, but for the most part she’s exactly what we both needed to add that extra zip into our lives.

7f637948030b231d9738fa7833a4ce17bf5eeb0dI know I’ll have to pick up a little part time work after the summer, because Pie-Chart Boy is back on the job and he’s got our fixed income budget worked out for the next 10 years. It’s the one part of Steven that I just don’t get. I’m not an analytical maniac like he is, so even though I’m a fan of a good spread sheet, he takes it past plain spread sheets to pie charts, graphs and color coded itemized formula inserts. But that keeps him busy as he studies Fox thBusiness News daily and investing our house sale profits to allow me to stay out of the workplace.  All the while I get to babysit Lil’ G several times a week and hang with Alexis and him on her days off. We now do those Mother / Daughter things we were never near enough to do. We grocery shop together, do lunches, pedicures, coffee clatches, walk the malls and generally just yuck it up while we both watch Lil’ G grow. It’s FUCKING AWESOME!

IMG_1879And since we have no back yard, but a beautiful campus here at the luxury complex, Steven is never alone and never left to sleep away the day thanks to the very playful Molly Min-Pin.

All in all life is great. Except for this one thing. Steven’s labs in March showed a rising in his LDH blood test. This last test in late June show them up even more. According to Dr. Sprawls, the levels are still in a normal range “FOR STEVEN.”  However we’ve been down this road before. If you are lucky enough to be unaware of this particular blood test – here you go:

An elevated level of LD may be seen with:
Hemolytic anemia – NOT
Pernicious anemia – NOT
Infections such as infectious mononucleosis (mono), meningitis, encephalitis, HIV – ABSOLUTELY NOT OR I’D BE OOZING SOMETHING, TOO
Sepsis – DEFINITELY NOT
Intestinal and lung (pulmonary) infarction – NOPE
Acute kidney disease – UH…NO
Acute liver disease – HOW HIS LIVER EVEN WORKS IS A MIRACLE, BUT NO
Acute muscle injury – POSSIBLE, MOVING, LIFTING & FALLING ON HIS ASS A BAZILLION TIMES HAVE BEATEN HIM UP PRETTY GOOD
Pancreatitis – NOPE
Bone fractures – NOTHING BROKEN
Testicular cancer – TESTICLES HANG LOW BUT NO CANCER
LYMPHOMA or other cancers –     →HERE WE GO!←

And so I’m back! A word to the wise. Don’t try to tell us not to jump to conclusions. We well know that this could be nothing. It also could be something. But we both know that when we try to keep our heads up our asses we don’t like the smell. So Steven is facing this head on, ass free and I am too. And while we wait for next quarter’s blood tests we’re enjoying no lawns to keep, handymen that run to us to fix every burnt out light bulb and my favorite neighbors who are only 8 miles away.  For whatever reason, I’m glad to be back!

I’m Writing a Book

MacWriter-APPLEphotoOK – I wrote it…not the book.  Just those words, which carry the intent that I’m gonna…write the book.   I’m doing this for a number of reasons but I’m telling you about it for only one reason – to keep me honest and hold me to it.  So buckle up and please, please. please come along with me for this ride.  I want to drive and I want you with me.

I’ve always thought I was destined to write a book and I’ve included the the phrase, “I know I’ve got a good book in me,” to countless people in thousands of conversations over the years.  But jobs, life, fun, sickness, health, child care, laundry, shopping, shaving my legs and multitudes of “good” reasons have always gotten in the way.  The truth of the matter is that the only real reason was laziness and fear.  I could have scraped together the time to write, hell…I’m writing now!  I just never wanted to take the plunge into the deep end of the writing pool because it seemed so… deep.   I can swim, but I’d rather just float…with a drink in my hand and my eyes closed.  Now, suddenly I don’t think I’ll drown.  I’m ready to do this.

Don’t ask me why.  I’m not exactly sure myself.  It could be, and probably is, a culmination of all the events that have led me to now.  It’s also a ton of little tiny signs that have converged into a tipping point becoming so obvious that I can no longer ignore them.  And then there’s this blog.  There are probably 3  entire books worth of posts in here, some of which will probably be, or be the basis of, a chapter or 10.

I believe in God.  I was brought up in a severely Catholic situation.  Catholic grammar Pond lily 4-3-11school, an all-girls Catholic high school and a Catholic college.  The only reason I didn’t end up as a nun is…well all the reasons.  Sex was probably the biggest.  But the costumes being black and I’m a spring who shouldn’t wear black, and the praying thing and my knee problems and the behaving all humble and… all that.  Let’s face it, just because I could recite the Mass in Latin doesn’t mean I would have been accepted into the convent.  But the point is that I just remember all nuns saying they heard God call them.  I’ve spent my entire life in close proximity to dozens of phones.  I never got the call.  Until this.  I think I got a writing call.

Yearbook Photo-MeCatholicism aside, my relationship with God has mellowed over the years.  For very personal reasons that are between me and Him, I was put in a position that forced my hand because of the strict rules the Catholics of the 1970s.  They liked to play hardball.  In order to marry a non-Catholic I was forced to make promises with which I took exception.  I had a long chat with God.  I assured him that I would get married in a church to make my family happy.  But I also assured him that I thought the priestly power play was just as skeevy as the fee I had to send to the Pope for papal permission to let me marry a rat-bastard Christian Scientist.  I told him if the parish was going to force me into a corner,  my Catholic days would be over.  And they were.

So for years my relationship with God has been pretty loose-goosey.  I actually really like it img_1435this way.  When I moved to Florida I realized that God doesn’t live in Churches.  Have you seen a sunrise at the beach.  That’s where God lives!  He owns oceanfront.  And when I talk to Him, which I do A LOT, I talk to Him the same way I talk to friends.  He knows I use the F-word.  He knows I’m sarcastic and bitchy.  He also knows I’m as dense as a fat chick in Extra-Small Spanx!  So over the years I have begged for signs when I’m at a crossroads.  And He humors me with HUGE effing signs when He’s finally decided to shoot me a map.  So for the past six months I’ve been praying every morning as I would drive to the crappiest job ever.  Nothing…until…

  • I sprained my ankle, tore a ligament and broke a bone in my foot while working.  Not sure about this but I think maybe God tripped me.  This was too stupid of an accident for me.  I’m pretty careful.  I know I have been the family breadwinner and golden goose since we started the Lymphoma Limbo in 2004.  I’ve changed a lot in order to protect myself just so I could continue in that responsibility.  This injury was freaky and the only way I could start making sense was when I tried to… WRITE about it!
  • I got fired from a crappy job, which in retrospect was the worst one I’ve had since a 4 hour stint as a dressing room attendant in a Gimbels department store in NY. Even though the Gimbels gig was a part-time college job, I wouldn’t put up with crap for a whole 8 hour day. I went out to lunch and found a new job…a better job….a more fun job.  Instead of clocking back in, I quit after 4 hours and couldn’t have been happier.  That had been my M.O. for the last 42 years so keeping a crappy job was WAY out of character for me.  I didn’t even realize that until I dissected it – in WRITING
  • I used to be able to get jobs really fast and pretty easily.  When I found something I wanted I was good about landing it.  Suddenly I can’t even land an interview.  And if and when I do, I damn sure know they’re going to be really impressed when they see the boot!  What about that?  Answer – It’s gotta be time!  Sit back, shut up and WRITE
  • My son-in-law makes little videos on a FB site and I want to watch them but can’t.  All his positive jibber-jabber has been pissing me off lately.  I’m trying to wallow in pity and self-help advice from a thirty-something is irritating.  But I accidentally clicked on him the other day and before I could stop it I heard him say, “What would you do if you knew you couldn’t fail?”  “Screw you Matt!  Blah-Blah-Blah…I can’t hear you!”  But I did hear him and immediately my mind clicked….Answer – WRITE a book.
  • Finally, there’s nothing that interests me on the entire world wide web, I can’t find a book I want to read and all 6000 channels on my TV suck.  I’m so bored and yet usually I have no problem entertaining myself.  Why now?  How can I occupy my time?  Answer – WRITE

So there you go, those are my signs.  And I think rather than wallowing in my own crap any more, it’s time I put the Can in Cancer.  So here’s the Premise:

Sept. Lymphoma Awareness monthCancer touches everyone. Yet it still has the stigma of leprosy and AIDS combined with the death sentence of a convicted criminal. People bristle when they hear the word; saying, “Cancer” evokes the look of pity, horror or uncomfortable dismissal from bystanders. It’s an awful disease. It’s scary, it’s unpleasant and it’s all around us. We need to learn to embrace its being, take a deep breath and look at it face on. We need to be able to make fun of it, to take away its power. And to use the word in conversation as a piece of news just like pregnancy, a tax audit or a sale at Macy’s. It’s something that’s going on in our lives. It’s something that effects us. It’s something about which many people need to talk. And the response doesn’t ever need a story that ends in a cemetery. You wouldn’t talk miscarriages with a newly pregnant woman, or jail time with an unfortunate taxpayer. And you certainly wouldn’t reminisce about a relative getting hit by a bus on the way to the semi-annual white sale at Macy’s. It needs to be the same with cancer. Scientists and doctors are working non-stop to obliterate the disease. We need to obliterate the stigma as well. Let’s make America great again and let’s make cancer fun again.

What do you think.  This one time, I’m asking you to use the LIKE BUTTON at the bottom like-buttonof the post if you’re on board.  And more importantly, please just this once, make use of the  “Comments” option below to tell me what you think, what you suggest, want you want me to cover…or anything you can think of that I should know.  Share all your thoughts.  I really want to know.  Share with any friends who you think will have an opinion and get me the feedback I need!

I’m going to do this and I want you to be part of it, so hop in and buckle up.  I told you before, I’m driving!

 

Happy Holidays to You and Us

Coda & Lil GWith the typical beginning of the holiday season being Thanksgiving, we started out with a bang…or maybe it was a SPLAT!  Cue the sound of water breaking! Is that the sound of a tall horse peeing on a flat rock?  No sir, it was the soggy sound of a newborn’s pre-flight check list!  We were over the moon to be blessed by the early arrival of our first grandchild.  His due date was December 5th but  he decided to show up unexpectedly before the holiday, and kept the new parents in the hospital until Thanksgiving day, thereby showing us IMG_1503all who will be running the show for a while.  But we are all thankful that his arrival was fairly easy as fast for Alexis (or as easy as it can be to squeeze an oven-stuffer roaster through a ketchup bottle), steady but controlled enough for Matt to navigate the rush hour traffic from work to home to hospital, and timely enough for the whole herd of grandparents to arrive before he landed.  We now have a beautiful baby boy to cuddle and love, only to pass him off to Mom or Dad when he starts to smell bad.  I think because his mother has worked on special events at Walt Disney World for such a long time, Lil’ G loves nothing more than having a Pyro Party in his Pants!  Cue the fireworks and hand him off!  I knew I’d love being a Nana!  Steven has chosen to stay with Shreve as his grandpa name, leaving the other more traditional names to the other grandpas.  It fits!

FU** CANCER TATTOOIt’s hard to believe we have more news even better than our baby’s baby…but we do!  It looks like Steven will be around to show this addition what NOT to do for a LONG time.  The results of last week’s PET scan came in the form of a 1/2 page report which was “No Abnormal Activity!!!”  In layman’s terms that spells NO CANCER.  Another holiday miracle for our family!  Even though we had no reason to think otherwise, it’s always great to get confirmation in black and white!  The IMG_1529stem cell transplant worked, the new cells are doing what they are supposed to be doing without being mugged by any Crips or Bloods gang cancer cells and we are breathing completely normally for the first time in 12 years!  To celebrate this momentous event, Steven got himself a new tattoo that is totally inappropriate for a new grandpa…or 62 year old man for that matter.  But somehow we both decided that it was perfect for the situation, so an early Christmas gift was permanently etched on his forearm today to mark the end of more than a decade of sickness and worry.  Sometimes inappropriate is the only way to go…thus making it appropriate!  I don’t have a single tattoo on my body, but I kinda want a smaller version of this one.  But I also want to win the lottery, so we’ll see how that goes!

All Knowing Orchid - December 2015

The All Knowing Orchid

And finally for today I checked with my magic crystal ball substitute…my monster orchid plant.  To refresh your memory, it started blooming the day I was laid off from my job.  That was August 5.  Not only is it still blooming, it has thrown off 4 new shoots with buds on them all.  I know I need a job…I puke a little in my mouth every time I remember that I had to sign up for Obamacare……there it goes again…a little puke.  But the buds are telling me to hang in there and not worry, it will all work out.  And that’s exactly what I’m doing!

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I’m Happy to Say, “My Husband is a Pain in the Ass!”

DUMBASSThat’s right!  I said it!  Steven is a pain in the ass!  He’s pissy and needy and demanding.  He’s driving me crazy and I think that’s AWESOME!  It means he’s getting better!  Sick people don’t generate these feelings in normal people…or even cranky, bitchy people like me!  Even WE feel empathy for sickies, we feel sorry for them, we feel caring towards them.  “Well people” exhibiting the same behavior are a pain in the ass.

Steven’s blood pressure is still unbelievably low.  In clinic this morning, he tested at 71/53.  And that was after walking to the front entrance of the hospital in 88 Blood Pressuredegree weather and then having me wheel chair him up to the 7th floor…which may or may not have involved a minor crash into the elevator wall, a close call in almost knocking over an industrial trash can and parallel parking job that nearly crushed another patient.  But even after all that, which by the way made him a little snippy, low blood pressure comes with the common-sense safety precaution of monitoring his every move.  Only now that he’s back on the outside where reality involves gravity, there are moves that he thinks he can make…but probably can’t.  Unfortunately, if anything bad happens where gravity introduces his bald head to the rough concrete, it’ll be on my watch…it’ll go on my permanent record.  So it’s safer and will make me look better if I just wait on him…and damn, he wants a lot!

I need my charger, I need my meds, I need something to drink, I need to go to the bathroom, I need to take a shower, I need to eat, I need, I need, I need.  Do you know what I need?  I need him to shut his pie hole and let me collect my thoughts.  Yesterday he was in a safe bed with everything at everyone’s fingertips.  If he needed help there was a nurse who was only caring for him and the guy next door.  Granted it was a 12 hour shift of constant care, but she didn’t have laundry or errands or calls from work, the insurance company or AT&T.  She was already AT work and also had a PCA to help her if both patients needed her at the same time.  And there were about 4 techs running around assisting the nurses and PCAs.  And they were all in a goddamned hospital where everything was set up for the ease of all of those rat bastards.

MOANING IN BEDNow it’s just me, trying to navigate a glorified hotel room, a regular bathroom and an average mid-sized SUV to cater to his every need.  And, by the way, I still have that arthritic toe (read my 2nd post ever – My Guide To Surviving Cancer) so I’ve got my own aches and pains that slow me down.  And after almost a whole year of cancer being the focal point of our lives, I’m a little tired.  I’m tired of rushing to work without getting everything organized before I leave.  I’m tired of racing out of work knowing I’m already exhausted but I have a million things that still need tending at home.  I’m tired of driving from Satellite Beach to Orlando or Gainesville.  I’m tired of trying to figure out how to put in a full week’s worth of work into 3 days.  And I’m tired of always being 3-4 weeks past due for a hair cut or pedicure or washing my own underwear.  So I’m getting a little cranky.  I can see the light at the end of the tunnel, and I can see Steven is finally on his way back to recovery after a really hard hit.  It’s just not quite here yet and we’re both in that vortex of irritation.

Today we were in the out-patient chemo room on the 7th. floor of the BMT wing at Shands. I could see our old stomping ground Chemo Room 6-18-15from there.  But instead of getting infused in a bed, Steven was in one of the comfy chemo loungers.  The nurse had given him a plumped up pillow and 3 warmed blankets to keep him cozy.  And all the patients there were wearing street clothes because when the IV pump beeps that it’s done, we all got to leave.  We get in our respective cars and go somewhere that is not a hospital.  And I am so happy that we’ve finally come this far.  I could see the stem cell collection room from there, where we started our journey.  And I could see our future in front of us, with all the fabulous new experiences yet to come.  And now, I can see Steven getting back his strength and stamina and energy.  And I just pray that I have a little more patience to get to that time.  Because sometimes, with a pain in the ass, you imagine him asleep as you hold a pillow over his face…

And if you’ve never felt that way about someone you love, then you’re a big fat liar.  I just say what other people think and I think we all have had similar thoughts sometime.  In reality, I know I’m the luckiest woman in the world.  Steven and I have come so far in this incredibly challenging situation that I’d never really kill him, I’ve got too much time invested in convincing him I’m a trophy wife, that the world revolves around me and he’s the luckiest man in the world…and he is…which makes us the perfect mates!

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widgetTHIS IS IT! Unfortunately, we don’t know when Steven will be released from Shands or how long we’ll be at Hope Lodge afterwards. What that means is that I don’t know how much time I’ll be away from work without pay. I’ve only got 2 sick days and 1/2 a vacation day left and our bills still keep coming! If you think you’d like to help us, we’d really appreciate it. Visit our GO FUND ME page and drop a bit in the hat if you have some to spare.

Apheresis Day Is Here!

IMG_1090What an exciting day! We’ve been waiting for this for months and finally managed to tip-toe through any hidden road blocks that might have detoured us again. Although we never even considered that we might get side railed, that was a possibility! There were 4 patients slated to start apheresis today. There were 3 left yesterday, Steven, Mrs. Johnson and some other guy. Today it’s Steven & Mrs. Johnson coming down the home stretch. Nobody will say why the other 2 people didn’t make it to the straightaway, but an educated guess on my part would be that both cooked up some sort of internal infection that booted them out of this week’s donating derby.IMG_1088

The Neupogen shots worked like Miracle-Gro. Steven’s white blood cell count has been 2.9 since August. With two Neupogen shots a day for 4 days, the test today showed his WBC at 24. That’s pretty close to 10x improvement. We just recently learned that the bone pain from the shots was from the good cells multiplying in his bone marrow. So even though he had about 3 days of old man, creaky, whiney bone pain…it was much easier to take this time because we knew why the pain was happening. I just wish we had understood the process earlier. It would have made some of the discomfort more welcomed.

IMG_1095When I got dressed this morning I put on my big girl panties so I could spend 4-6 hours with Steven amid all these machines, monitors and blood. For a wuss like me, it’s kinda pukey…and kind of amazing at the same time. The nurses and techs have been awesome in explaining how it all works and what all the lines are coming and going from the trifusion port, or Rasta Tit as I like to call it. The machine has all kinds of bags and tubing coming from Steven and going through an obstacle course of twists, turns, and separators. It looks just the way it should…incredible. So here’s the Alexandra version. One lumen (Rasta Dread) pulls blood from Steven mixes it with an anti-coagulant and runs it into the machine. The blood goes through the circuit where it’s centrifuged and broken down. The good stuffIMG_1093 containing the stem cells that will go back into Steven in two weeks go into the special bag. Then, and the leftovers get warmed up again and put back into Steven through a different Rasta dread…so he doesn’t look like a raisin when we’re done! And the third Dread just hangs there in case of emergency. That can be used to add any special spices or sauces into the mix. For example, if he became really low in calcium during this procedure, they could add some back into his blood via Rasta Dread 3, without tainting any of the Steven juice that has already been collected.

IMG_1094We’re at the halfway mark at 11:30 am and the machine is humming along.  The nurse is overseeing the process, carefully charting numbers, vital signs and addressing every beep and ding that happens.  According to the numbers, we should be done closer to the 4 hour mark than the 6.  Which is really good, because once he was hooked up, there is no stopping.  When nature calls, a porto-something will be involved and I’d rather not share that joy!  The strangest thing we’ve found is that this is a highly emotional experience.  Last night was a bit pensive and very reflective for each of us.  Yet once we got started today, all that went out the window and it’s been a smooth albeit chilly ride.  My only word of advice for anyone preparing for this is dress warm!  The machines and samples must be kept at  a certain temperature, and that is way colder than Steven can tolerate without drama.  Luckily, there are plenty of warmed blankies to go around.

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widgetIf you would like to help me take more time away from work and have more time home caring for Tumor Boy writing about our adventures with Cancer, we’d be so very grateful if you’d visit our Go Fund Me Page. Our insurance has a lot of loopholes for things that aren’t covered, and my job has no loopholes for being able to work from home! And I’m gonna do whatever I have to do to keep my husband around. After all, I just got him house broken!

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I’D LOVE IT IF YOU SIGNED UP FOR MY E-MAILING LIST! IT’S JUST YOU AND ME, BABY! I DON’T SHARE MY TOP SECRET SUBSCRIBER LIST WITH ANYONE, SO YOU WON’T GET JUNK OR SPAM OR FOUND IF YOU’RE IN WITNESS PROTECTION! I JUST WANT TO LET YOU KNOW WHEN I POST A NEW ENTRY. SUBSCRIBE HERE