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 3

IMG_1099We’re tired today, but we’re still trying to hold on to the good humor and positive attitude that we brought from home.  The outcome of our first day of stem cell collection would probably have been easier to take if it hadn’t been for that overachiever, Mrs. Johnson.  Steven put out 750,000 CD 34 cells (and don’t you wonder who has the patience for the job of counting all those little suckers).  The goal is 4 million.  Two million is that absolute minimum to do the transplant, but the doctors like to have 4…I guess that accounts for spillage?  Leftovers?  Whatever.  It was fine for us until Mrs. Johnson told us her day 1 was also her day done because her little baggie ended up with 11 million CD 34s.  Bitch!

The low count for us is nothing we could control.  The amount collected is in direct IMG_1098proportion to the amount of chemotherapy and / or radiation that each patient has received.  As we all know, Steven’s had so much chemo that his pee glows in the dark, so this was not a surprise to the medical professionals.  Unfortunately, we always expect a miracle, so when that miracle doesn’t happen, sometimes we are a little disappointed.  On the other hand, we have had a LOT of miracles during this adventure, and it was probably just Mrs. Johnson’s turn, so we really are happy for her.   Yet, I have to end the paragraph with “bitch.”

IMG_1097The next step was adding another ingredient to the mix.  Steven has been getting Neupogen injections twice a day since we arrived in Gainesville.  The first given at 8 AM-ish.  Since the collection started, he gets the shot a little later, after he’s all hooked up on the machine and it’s running which usually ends up in the 9:15 range.  And then we’d been coming back to Shands at 6 PM for the second injection.  But in order to encourage more of those CD 34 cells to sneak out of the bone marrow and party in the blood stream, making them easier to collect, another injection was going to be introduced.  However, that injection must be administered 11 hours prior to collection,IMG_1100 meaning we needed to make our second trip to the hospital at 10 PM for the plerixafor and Nuepogen cocktail.  That’s a great way to keep from relaxing at the end of the day!  You don’t want to fall asleep and miss the appointment time, but you don’t have the energy to go out dancing until 10.

Monday night wasn’t too bad.  We thought it was a one time thing, so we just considered it a really short date, although the planning was a PIA.  Hope Lodge has a 9 PM curfew.  After that, the alarm is set and the doors are locked so if you want out, you have to make arrangements with the night manager to let you out and then back in.  It’s not a huge deal, and our night manager Diane couldn’t have been nicer about it, but it’s just one more little detail to manage.  Regardless of the hurdles, the shot IMG_1101helped and Steven yielded another 900,000 cells which puts us in the 1.6 million ball park. We were getting closer, but we knew we were in for another late night date on Tuesday.

At this time, I suggest to hit the link to see the side effects of plerixafor.  Allegedly that is the generic name for Mozobil.  My generic name for this nightmare is Colon Blow.  Because if the first dose doesn’t act as a total cleanse, the second definitely will.  As if we weren’t tired enough, we didn’t get much rest last night.  If I wasn’t so tired myself today, I’d probably be feeling bad for Steven.  Unfortunately, I’m downright exhausted.  I’m not sure why.  The collection takes about 5 hours and I just sit here with him while the machine does all the work.  It’s not like I’m running a marathon.  And with my knee still giving me problems, I’m not getting a lot of aerobics in back at the Lodge either.  But for the past few days, I always feel like I could fall asleep if I just sit quietly for too long.

So we’re hoping for a miracle again today.  I don’t know if it’s possible for Steven to shoot out at least 2 million CD 34s today, but if the good Lord has it on his agenda, I would be extremely grateful.

widgetWe could sure use your help.  I’ve been taking a LOT of unpaid time off and Steven just won’t get that paper route I’ve been suggesting.  As I continue my entertaining writing projects 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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