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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We Now Return To Our Scheduled Program

And, we’re back in 3-2-1….

I’ve been looking for work…probably in all the wrong places.  So for now, I’m still a slug and quite frankly it suits me.  Steven is getting some energy back and we’ve been trying to get our home back to an organized state after the whirlwind that has been our lives.  I miss my dogs like crazy, but it’s been over 6 months since they were adopted out, I’m finally able to clean the lint trap in the dryer without finding enough dog hair to build a new pup!

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And I can finally look at pictures of them without bursting into tears.  That is an accomplishment of monumental proportion!

IMG_1432Also on the up side, I’ve been thrilled to spend so much time with Steven. After 3 years of way too much time apart with him in hospitals and me in the car driving for hours to and from a job that was sucking the life out of me, I like being home!  In retrospect, it was a blessing to have had the opportunity to make some decent money for a while and get good enough insurance coverage to manage a stem cell transplant.  I went back into my insurance EOBs, just for shits an giggles, just to see the “retail” cost of this transplant which I think is considered reading fiction so anyone going into this type of procedure should read this with a grain of salt, but whatever, I had the time!   From initial visits for stem cell collection which took 4 full days, the 37 days in Shands hospital and then the weeks of daily out patient visits while we stayed in  Hope Lodge, we garnered a 5″ pile of claims and we racked up about $3 million in costs billed to insurance (again…we all know are storybook numbers, right?).  I’m sure it would have be a good deal less without the added cost and excitement of the C-diff infection and the Cardiac SWAT team incident ($131 K for that day alone!!!)  So to celebrate that outrageous and mind boggling number, and because our COBRA insurance is now paying at 100%, I treated myself to some arthroscopic knee surgery on both knees to fix years of overuse, misuse and fun!  WTF…if I’m paying for COBRA I’m using it!

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What a pair we make!  I’m walking OK after I get warmed up, but I do start out each and every new steps with a few “Grandpappy Amos” moves that should embarrass me, but just crack me up!  Somehow this entire year has knocked the vanity right out of me.  I’ve learned to “own” me…skin tags and all!  I never thought I’d admit that we have a handicap placard and sometimes I have to use it for ME!

Steven moves faster than me, but wears out way quicker.  Our first few outings were something to behold.  On one of our first trips to Lowe’s he pooped out in the hardware aisle and couldn’t walk another step.  I found him a perch and had to go get one of those “go carts” for him…only I couldn’t figure out how to get it to move…Bee Tee Dubs – DO NOT TRY TO DRIVE AWAY WHEN IT’S STILL PLUGGED IN!!!! #learningthehardway!Steven 11-12-15

Our adventures will continue long into the future and we’ll both get better like fine wine.  But for now we celebrate the baby steps…Steven’s got hair and I can kinda walk without limping.

 

IMG_1450Alexis will be squirting out our first grandson any day now and life is good.   We are excited, happy and looking ahead to all kinds of good things.  There are days that I just can’t believe the crotchety old grouch-bitch that used to live inside my head seems to have disappeared into the mist.  I know I’ve been consciously trying to pack up all my old baggage and crap during this “hiatus” but seriously?  Who ever thought it would work?

However…Steven can’t work for now and probably won’t for a while.  I haven’t found a job that I can land, and we should be panicked, but I’m not and neither is he.  What’s with that?  I think it helps that God keeps the orchids blooming in our yard reminding us that we’re SO not in charge of any of this and that it’s all coming together the way it’s supposed to.  So I’m glad to be back writing and I hope all our BMT cohorts on the front side of the experience can look at us as positive reinforcement to hang tough, be positive and believe it’s going to work out…even if it doesn’t seem possible.

We haven’t watered, fertilized, pruned, clipped or tended these orchids in years.  We decided to let God do the gardening for us because we just couldn’t MAKE it work. Sometimes you just got to believe!

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Thank You HD Supply

IMG_1253There is major Reduction in Force (aka RIF) going on within the company in Orlando. I was the first casualty. Unfortunately, that kind of thing is unexpected and is so overwhelming that things happen that are beyond immediate comprehension. One of which was the signing of the release paperwork. Apparently in my stupor, I signed away any rights to to say, publicize or think anything negative about said company. So thus far I have been silent. However after 2 weeks and lots of martinis, I can now say “Thank You” for releasing me.

IMG_1289Thank you for giving me my personality back. Over the last 3 years I had become so very negative. It was never obvious to me until I spent time with Steven living in the hospital at Shands. While he was literally flirting with death trying to fight the c. Diff. infection, I realized that I was more level and in control with him there than I ever felt in my “regular life.” After 2 short weeks, I now feel like me again after being canned, so thank you for giving me back to me.

Thank you for giving me the time to spend 24/7 with Steven now that his recovery is IMG_1270coming along.  I’m so grateful to have the time to be with him while he regains his strength and stamina. I know that being cut off from our health insurance during this critical recovery time probably seems inhumane but it is a great opportunity for me to work on my bookkeeping skills in order to juggle funds to afford the mammoth COBRA payments. After reflecting on that, I say “Thank You.” I’ll be a better person for this.

Thank you for the rocky road of management changes within the division that have helped me to be more flexible. After a dozen fearful times of suggested termination by the client to whom I was assigned, I thank you for the nerves of steel I have developed.  I have learned more here than I would as a contestant on Naked and Afraid!  Living among snakes and vermin is the crux of Naked and Afraid.  Thank you for allowing me to keep my skivvies!

YOU WANT FRIES WITH THAT?

YOU WANT FRIES WITH THAT?

Thank you for the schooling on the reality of the FLMA regulations. I mistakenly thought that I could not be laid off during this protected time. I was foolish to think I was safe during Steven’s illness and really thought that if the quarterly panic of losing my job happened on schedule, I would merely be transferred to another position. Thank you for not placing me into another opportunity. I could be working in a warehouse but Thank You for not considering that, or any other position as an option for me.

Thank you for having the goofy little manager give me the news. I would have been so much more upset if someone with stature within the design center department did the deed. Lucky for me, the messenger never made eye contact with me while haltingly explaining that this “Reduction in Force” was “just business” and had nothing to do with my performance. It made me feel so much better to know you think of me as an outstanding employee and are just letting me go because so much business has been lost by the division. Thank you for that buoy. Great to hang on to something like that! You can’t imagine how that made me feel.

And thank you for sending the giggly branch manager to give me the news. It was a great exercise in my detective skills in figuring out what to do once the shock had worn off. If he had given me the 14 page departure packet, I never would have haIMG_1231d the opportunity to work on my research skills. Thank you for getting me off my butt to refresh my googling abilities!

And most of all, thank you for doing this to me for the second time. I can be a slow learner but I do learn best by repetition so thank you for that. Manager boy suggested I check your website for future job openings. My daughter has threatened to kill me if I do. Thank you for opening that door of communication within my family.

My only insight to all of this is that RIF may make companies feel better. Calling this situation “Laid Off” almost sounds like a colloquialism for “getting screwed.” But the truth of the matter is, tomorrow when I get up and DON’T go to work, in the words of Donald Trump, “You’re fired.”
On a totally unrelated subject, I have a query to my IT friends. When you post with an iPhone, how come auto correct changes “Fuck You” to “Thank You?”

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widgetIF YOU’D LIKE TO HELP US WITH OUR COBRA PAYMENTS, WE’D APPRECIATE ANY LITTLE BIT YOU CAN SHARE.  GO TO OUR GO FUND ME PAGE.  THANKS FOR READING MY BLOG!

Too Many Thoughts for My Tired Old Brain

IMG_1236Have you missed me?  I’ve been wanting to add a new post for a while, but I just couldn’t get my brain to settle down enough to focus on a any particular idea and organize it.  So today might just very well end up as a smorgasbord of semi-connecting concepts.  But I’m going to share anyway, because I think this is a direct result of the past year (yes…surprisingly it’s been that long!) and I’m trying my best to keep it real!

  1. Steven is doing great.  That’s the most important topic of every day.  His last visit with Dr. Sprawls had the doctor in awe of the progress and the full experience of what’s gone on.  He can’t believe that Steven was taken right to the very edge of death only to come back as the new-new and improved Steven 3.0 (For a little more history, read A Thank You to Cancer For Steven 2.0 from February 2011)  Steven knew the doctor
    SISTER MARY STEVEN...LOL!  HIS HEAD IS ALWAYS COLD!

    SISTER MARY STEVEN…LOL! HIS HEAD IS ALWAYS COLD!

    was more amazed than we are because he kept repeating, “You know they gave you LETHAL doses of chemo, right?”  The answer to that, by the way. is YES!!!!  We know…even though we tried not to think about it at the time, the days after the transplant, Day +7 through Day +20 to be exact, were fucked up!!!!  For poor Steven, I’m pretty sure his main thoughts during that span were that he knew he COULD die, was pretty sure he WOULDN”T die but absolutely felt like he HAD died and gone to HELL!  And now we’re through it and it’s changed life for both of us in the most extreme way…and I can’t even put it in to words yet.  The only thing I’ve got right now is “Fucking Unbelievable” and I don’t think that’s really an article for Yahoo Health!

  2. Facebook has this new annoying addition of grabbing a throw back photo from IMG_0577a past post and popping it into your news feed just to screw with your brain.  I’ve been in a tailspin since July 27 when I had a photo thrown in my face of Maritza and Zoey in the backseat of the car with the caption, “Maritza and Zoey want a dog…going to try on a few!”  It made me so sad that we picked out a new puppy, waited anxiously for her to be old enough to come home to us, got her home just to find out that Steven’s chemo hadn’t worked.  After a lot of sickness and hospital stays mixed in with puppy training and being outnumbered by high energy canines, we ultimately had to find new homes for all three girls in 1 year.  And then added the transplant process on top of that.  Seriously, God…WTF?  YouPREGNANT PEDICURES might me giving me too much credit for strength!
  3. The news that Alexis was growing us a grand baby was the turning point in grabbing on to a life line.  We found out right before the transplant and it was the ray of light that we turned on when things were the bleakest.  Sadly, I went way overboard on my prediction that I was getting a granddaughter.  Thank you God for making me leave the bag I brought from home in the car.  It held a few items of hand-made heirloom girl clothes that were made by me and my mom when Alexis was a sprout.  I can’t decide how crazy it is that I would hang on to that stuff or how embarrassing that it would have been to present a pile of couture cross-dressing styles to her in front of her friends.  Either way, I just wish I could have gotten my face to keep smiling without my eye twitching and FEED MEmy mouth tensing up in a grin resembling The Joker!  Unfortunately, I’ve gotten the rep of being a big mouth who can’t keep a secret, so I found out the news with the rest of the general public and just wasn’t prepared to be wrong. A little pre-party notice would have been nice!  Surprisingly, you’d think by now that Alexis would know that I always feel like I should get preferential treatment.  But she’ll understand in 4 short months when she tries to push a Perdue Oven Stuffer Roaster out her lady parts.  Next time she’ll know why I feel that I ain’t just the one of the masses!  And, boys are good too and I’m still excited to have a baby in the family.  And I’m not asking again what they are going to name him.  I needed a quick fix to get used to the boy thing, so I decided that I’m calling him Chachi!
  4. I’ve been limping around longer that I can remember walking right.  I’m pretty SWOLLEN KNEEsure I haven’t worn heels in over a year.  This is the first time in my life where I’ve got a closet full of flat shoes, and I really don’t like it.  Seriously, when we first went up to Gainesville for Steven’s evaluation, I actually needed to use his walker to get get around the huge facility.  In between evaluation and collection, I went to a orthopedist who took x-rays and determined a bunch of minor problems.  An MRI was really in order, but I just didn’t have the time with Steven’s full treatment schedule, so I got a shot of cortisone and limped away.  It helped, but not enough to get me on my own feet without walking like Granpappy Amos.  I hated the fact that Steven could move faster than me, so in between collection and transplant, I stopped in for a second shot of cortisone while we were home.  I was told that and MRI was mandatory if the pain continued and it did.  So I did.  When we finally returned for good I squeezed in an MRI before returning to work.  It seems I’ve been hobbling around with a torn meniscus, a huge Bakers cyst on the back of my knee and a bulb shaped swelling of bursitis on the front of my knee.  gallagher_audienceWhen I shave my legs it’s like a trip through the Rockies!  So I’ve got a date set for August 14 for arthroscopic surgery that’s supposed to be a snap.  I don’t see how that can be.  I think the doc is going to drill the first hole in my knee and get hit in the face with a geyser of fluid tantamount to Old Faithful before he even reaches my meniscus.  I’m no doctor but if I can see the fluid from the outside, I can’t figure out how he’s going to get around it without it being like a first row seat to see Gallagher!  Either way, I’ve already got a prescription for pain pills for afterwords and I’m going to insist on a little sumpin-sumpin to calm my nerves upon arrival.  Not for nuthin’ but my pits are sweating already.
  5. And finally, it’s the usual quarterly scare of “I could get laid off at any minute” going on at work.  I’ve never had a job that was so tumultuous and I was a stand up comic for 8 years!  I just work for a builder who loves to chain yank and my bosses either don’t pay attention enough, don’t worry that they still haven’t found anything definite to fill the gap if we do lose the account or, and this is my opinion, don’t give a rat’s ass about me.  After all, I got laid off once 3 years ago kinda in the same way.  And since I believe the rule of thumb is, and I paraphrase, “Screw me once, shame on you…screw me twice, shame on me!”
    YOU WANT FRIES WITH THAT?

    YOU WANT FRIES WITH THAT?

    So that’s another thought for my tired old brain.

For the most part I don’t let it bother me too much.  However, this weekend was the blue moon, so I did spend a good part of Saturday howling at whatever, retaining water and bloating like water balloon and feeling a little sorry for myself.  But today is Sunday, I’m trying to shake off the bad vibes and focus on all the great stuff going on.  So here’s the short list:

  1. Steven isn’t dead and is cancer free.
  2. I don’t have to pick up poop in the back yard.
  3. Granny loves Chachi
  4. Free knee surgery since our out of pocket maximum has been met
  5. FMLA says I can’t get fired, so I wonder what will happen next??? STAY TUNED!  SAME BAT TIME…SAME BAT CHANNEL!

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widgetTHIS IS IT! WE CAN SEE THE HOME STRETCH! Unfortunately, we don’t know when Steven will be able to be 100% self sufficient to be left to his own devices. Until that happens, I’ll be taking assorted days off from work AGAIN…We’d appreciate any help you can give us!  PLEASE VISIT OUR “GO FUND ME” PAGE

Talking About a Transplant

2013-10-05 11.07.27Steven and I have been talking a LOT about our future, since we now have a long one ahead of us!  This transplant has really given us a different outlook on everything. Most importantly, we’ve again been reminded that we are a great team and always have been.  For those of you who are new to the blog, the shorthand version of our story started when I answered an ad in the newspaper for a receptionist’s job for Steven’s business.  I cast my spell on him, got the job, got the big desk, got the checkbook, got the presidency and got the ring within a year.  I don’t screw around when I see something good…wait, what?  I guess that’s not true…LOL,,,I did get the ring!  Nevertheless, we started out our relationship working together, and then working together and living together and the bottom line is that we really like being together and are really good at it no matter how many hours a day we are lucky enough to steal.

IMG_1228Steven gets weekly calls from one of the transplant nurses from our insurance company.  She’s quite nice and since she was assigned to our case at the onset, she’s followed every aspect of treatment and has been very helpful and encouraging throughout this journey.  The reason I mention her is because during her last conversation with Steven, she asked him if we were still speaking to one another.  We were both perplexed by this until she explained that most couples run into a very bumpy period once they have to spend 24/7 with one another.  Quite frankly, neither one of us can imagine that.  We really love, love, love being together.  Which is why we’re trying figure out some way that we could use this experience to set up a situation where we could work as a team again…once Steven can stay awake for 8 hours straight!

One of the most obvious directions to me would be to give presentations (serious commodecomedy shows?) on the the patient and caregiver sides of the BMT adventure.  I think it would be a huge service to patients, caregivers, extended family, hospital workers and even peripheral medical support staff to hear from both of us.  Steven would be speaking from the guinea pig side and me as the smart-ass side kick caregiver.  It would be awesome!  More importantly, it would be real.  And since we’ve learned soooooo much during the past few months, it would be a crime not to share it.  Especially because all of it comes from first hand life experience that’s not in any book, pamphlet or web site.  Luckily I’ve been documenting snippets of it through this blog, leaving us with a written reminder of how things really were so we won’t ever forget Chemo Room 6-18-15or re-write it in the cobwebs of our memory banks. Honestly, I think that is something that is very hard to find out there in Cancerland.

I had the opportunity to speak with a BMT transplant patient who had his procedure 10 years ago.  He tried his best to recount the experience, but I’m fully convinced that it’s just like childbirth.  You just can’t remember exactly how bad it felt after it’s over because you’re just so damn glad you did it!  That patient, Jim, gave me his story and his recollection, but he made it sound like no big deal and I knew that couldn’t be possible.  It did make me feel better about going in to the transplant, but because I was pretty sure it lacked a LOT of the real details, I was always looking around for pitfalls that I knew had to be ahead.  That was rather exhausting and a huge drain of energy.  I think in retrospect it would have been easier to just know what was going to be the pitfall and approximately when it was going to happen and then to just coast until it arrived!

Steven’s take on this right now is that he’s having a hard time talking to potential BMT2012-07-14 16.48.42 patients because the memory of all the bad stuff is so clear.  He says he doesn’t want to talk to people about it, but I know what he really means is that he doesn’t want to talk other patents OUT OF it.  I think he’s afraid to talk about it because he just can’t put a good spin on it.  I think he doesn’t have to.  I think it would have been great to have someone like him telling us that it was going to suck…but just for 30- 45 days.  Seriously, who couldn’t go through “suck” for 45 days if they knew a long life was to follow?  And Bee Tee Dubs, no one just goes into a stem cell transplant cold.  All the patients have had some sort of chemo, sometimes a LOT of chemo, first.  So there are really no big surprises on the degree of SUCK here.  Patients are already familiar with the drill.  They just need someone to lay it all out for them.  Show them the ins and outs without under or overplaying it.  How great would it be to be able to give a little presentation and be honest about this transplant and still be encouraging…and maybe a little funny?  I think it’s not only doable but a real service to the cancer community.

Alexis & MickeyThink about this…you’re in love with the man of your dreams.  You’ve got a few glasses of wine in you and things are getting hot and heavy with no birth control in sight.  You’ve been told that what you’re about to do might result in you passing a watermelon through your hoo-haa in 9 months.  Do you stop?  Yeah!  Me neither.  I’m just going to relax and go for it knowing that I have 9 months of coasting until that one day of IT SUCKS!!!  And then you have a sore hoo-haa for a bit and a great new baby!  And that’s how Bone Marrow Transplant should be presented.  What do you think?  Am I on to something?

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widgetTHIS IS IT! WE’RE WALLOWING AT THE HOME STRETCH! Unfortunately, we don’t know when Steven will be able to be 100% self sufficient to be left to his own devices.  Until that happens, I’ll be taking assorted days off from work…without pay. It’s getting tight around here! We’d appreciate any help you can give us!

…And Life Goes On

Cancer has been interrupting our lives for a long time, but life goes on around us as if we were in our daily routine. It’s a shame that we have had to miss a lot of family events. A neice graduated college, a nephew got his MBA, numerous birthdays, special events and holidays have passed and Steven and I have missed them all. We can both see the really bright light at the end of this tunnel, and we can see that it’s getting close so we’re trying to be patient, but it’s hard.

We miss our home, our stuff, our way of doing things. We miss making out own plans rather than having medical appointments determine our day. I might even miss my job…wait…what?  No, I just miss my design center partner.  She’s a kindred spirit so I miss our chats.  But most of all, I miss family life.

 On Fathers Day this year there wasn’t any celebration. Steven wasn’t up for guests because he was being prepped for a colonoscopy, so that wasn’t very festive. Luckily, we had a reprieve on Mothers Day where we were between chemotherapy and apheresis, so we were home. And as a combined Parents Day celebration, Alexis and Matt came to our house and made waffles and a frittata breakfast spread for us so we wouldn’t have to be out amongst the germy public.

  It meant a lot to both of us because it was the perfect send off to begin our BMT adventure.

We both took the memories of that day with us as that bright spot we could revisit on the less fun days that we have weathered during this experience. The only memento that Steven packed was an old Fathers Day gift that Alexis gave him years ago. That was his little bit of home.

 As for me, I’ve just been wearing the awesome charm necklace that was my Mothers Day gift this year. It holds fond memories of the first vacation we took with Steven to Pineapple Cottge in the Abacos. The deck of cards is a reminder of our awesome college graduation trip to Vegas for Alexis after Steven crushed Lymphoma the very first  time…and that’s also the reason for the green ribbon. The cross shows the faith we’ve had that God is watching over us and the rest are pretty self explanitory.

 Oh, and the December birth stone is mine, too. Wouldn’t it be great to share the same day as my first grand baby!  It could happen!

It’s Time To Stop Fighting It

voices in my head signNo matter how old you get, or how much stuff you think you know, there are a few little traps that still snag us.  Steven and I both know that enjoying life to the fullest really depends on living in the moment.  As I key those words, I’m realizing that I suddenly sound like one of those yoga pant-wearing, “Nameste” quoting Mellow McMellow nuts…and I kinda want to punch myself in the “OMMMMM.”  But if I dig down deep into my yoga pants, I can see where we’ve been going wrong here in Gainesville.

Cancer is definitely not something you should sit back and enjoy.  Neither is chemotherapy nor is the aftermath of side effects.  (As far as I can see, the only really good thing is the automatic weight loss.  It’s a fat chick’s dream, but no matter how thin you are, it’s hard to rock the bald look!)  Back on point, once a treatment plan has been determined and everyone is on board for the ride, it’s imperative to ride that prancing pony with all the enthusiasm you can muster.  I say that as the voice of experience.  Steven’s saying is, “If you’re gonna be a bear, be a grizzly.”

Being an expert on making plans, lists and schedules, Steven can be a handful when anything seems to be at a stand still.  I take a little longer to lose patience with a gridlock, but I’m not THAT far behind him.  Consequently, I think we’ve both been driving the Shands’ doctors and nurses crazy.  When we were on the “other side” (In-Patient wing of the BMT floor) Steven couldn’t wait until his numbers recovered enough to get out.  He kept telling the doctors and nurses that once he got to go to Hope Lodge, he’d start getting better faster.  On the other hand, they already knew that he would get better and better every day…that was kind of the point of this whole adventure.  But, they didn’t want to let him go until they knew he wouldn’t fall on head, go into cardiac arrest or just simply drop dead in his sleep.  In retrospect, all good reasons for their hesitancy to discharge.

In reality, Steven has gotten better and better every day.  I’m doing a fine job of nursing him at our home away from home.  But after about 2 days at the Lodge, he started with his push to go to our home-home.  Even I was beginning to think he sounded like a broken record.  (“broken record” is an idiom, kids.  Google it)  But no matter how hard he has pushed, the docs have pushed back…or at least politely and gently fended him off.

So here’s the deal.  The chemo that Steven had in preparation for the transplant was very hard on his body.  His system is trying to recover, but over the years he’s had a lot of different chemo drugs that all have a tendency to screw up the way his body is supposed to work.  So his levels show up really wonky on his daily blood tests.  Where it gets a little blurry is that in regular life Steven doesn’t feel really bad, just utterly and absolutely tired.  So from his point of view, he could sleep at home.  From the doctor’s point of view, they don’t want to sign off on sending him home until they’re sure he’s stable according to the levels in his blood.  And it’s taken all week for both of us to accept that the doctors are going to trump us every time.

Yesterday we finally decided to stop fighting the medical professionals.  It’s hard to believe that it’s taken this long, but that’s how we roll.  So today we sit again in the chemo room.  The usual on the menu for him is IV fluids and potassium.  He’s in a circular holding pattern that the docs have not been able to break.  He had that really bad diarrhea, (you can re-read that post if diarrhea is your thing) which made him really dehydrated, which caused a low level of potassium which affected his blood pressure.  In order for us to go home, we have to get Steven’s potassium level up.  He’s fine if he gets it in an IV infusion., which means we have to be here.  If we want to go home, he has to take potassium supplements orally.  If he takes the pills, it gives him diarrhea and yada, yada, yada…we’re still here.

So I just got an appointment card with visits for Saturday, Sunday and Monday.  Which means we’re not going home this weekend.  We’re not even sure if we’ll be going home next week.  At this point, I just want to be home before December!  We have good reason to be festive and thankful for the holidays.  And of course, we have another birthday to celebrate!

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widgetTHIS IS IT!  WE’RE WALLOWING AT THE HOME STRETCH! Unfortunately, we don’t know when Steven will be released from Shands out-patient treatment or how long we’ll be at Hope Lodge. 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 some kibble in the kitty if you have some to spare.