Yay! A Fever!

th-2The +Days after a stem cell transplant are really weird.  There are things that are going to happen, usually unpleasant, sometimes EXTREMELY unpleasant, that are benchmarks during the recovery process.  We knew that going into this.  We were promised that, among other things, Steven would spike a fever, have lower GI problems, lose his hair and feel like crap.  Good to know the doctors here at Shands have not gone back on IMG_1163their word!

Day 0, transplant day, was pretty mellow.  Steven was tired and a little head-achey after all the action in his room.  But other than feeling like he needed a nap, he didn’t feel any different than he did the day before the transplant.  That’s the way this cancer therapy always works.  You get the secret antidote but nothing happens.  There isn’t a remarkable curing, there isn’t an immediate side effect.  You just have to believe you got the antidote…and wait.  And when you finally feel like crap, it’s working!

I'L TAKE CARE OF YOUWe are so lucky that during the 7 days of chemotherapy prior to transplant, we had some incredible nurses who would teach us and explain what was happening, what could happen and what would happen during Steven’s hospital stay.  This is a teaching hospital and it really shows in all the staff.  They all know their stuff, they have helped guide numerous patients down this precarious road. They are incredibly pleasant and kind while caring, teaching and reassuring the patients to whom they have been assigned.  There is not a bad, cranky or inept nurse on the floor.  They are all rock stars, and the PCAs are too.  But just as it is with rock stars, everyone has their favorites for one reason or another…and so do we.

save a life-nurseWhile I was tending to our real world for the first few days of chemo here, Steven regaled me with stories on the phone of all his caregivers.  And then came Nurse Priscilla.  He just loved it when she was assigned to him.  He had nothing but wonderful things to say about her attitude, knowledge and demeanor.  He talked about her with the same respect and reverence he has for Taylor Swift!  LOL!  I know that sounds weird but that’s Steven’s rock star.  Talented, cute, smart and a lady at all times.  That is his MO for evaluation, and has been for as long as I’ve known him.  When I finally got to spend a few days with Steven, I realized that Priscilla is more than Taylor Swift.  She is Alexis.  She’s smart, with a funny twist that makes her explanations of all things cancer seem logical laughter best medicine-diarrheaand bearable.  She’s just as cute as can be…attractive, fresh-faced and bouncy with a relaxed way and a fast wit that is absolutely charming.  Her talent for nursing is abundantly obvious the minute you see her in action.  She’s efficient and confident in everything she does and knows exactly why it is the way it is.  And she can explain it so we know why, too.  And I knew the minute I met her that she was special and her likeness to Alexis made us feel like we’ve known her for years.

explosive diarrheaSo we were schooled for every waking minute of the 7 days of chemo.  We were being prepared and groomed for what is going on now. Days +1 and +2 were just a waiting game.  We were waiting to see when the fever would spike and if something else would get there first.  While I was at work on Day +3, something did get there first.  Steven started to have that oldie gowns & glovesbut goodie that follows chemo…diarrhea.  But this time it’s different.  As his blood counts drop to nothing from all the chemo before transplant, normal bodily organisms get out of whack and try to take over.  The gut is one of those places. If you think of the gut as the Middle East of the body, then the terrorists are called C. diff.  The C. diff are just regular inhabitants when all is normal in their land, but as soon IMG_1164as there is conflict, that’s when they go all terrorist and try to take over.   Symptoms of more severe C. diff infection include: Watery diarrhea, up to 15 times each day, severe abdominal pain, loss of appetite, fever and a few other symptom which make this little goody a real gem!  It’s also a major PIA because it is contagious to people with compromised immune systems, meaning all the patients on this wing!  So everyone in and out of Steven’s room needs to suit up and wash up to contain this to Steven’s room.  So not only is the infiltration like a terrorist, the costuming that goes with it is akin to a IMG_1169disposable yellow burka!  Soap and water are my best friends, with hand sanitizer and bleach wipes running a close 2nd and 3rd!  And luckily those items, mixed with a 14 day course of antibiotics will wipe this terrorist cell out!

In the meantime, Day +4, which is today, finally brought the fever.  Yippee, skippy Steven is officially neutropenic.  As soon as he hit the magic number on the thermometer (100.5 degrees) the troops started to circle.  Blood was drawn in several different vials for testing, the x-ray machine was wheeled in for a chest x-ray to take a look at his lungs and more antibiotics started, although this time they’re not oral, there is another IV drip.  Being the overachiever that he is, Steven went to 101.5 for his temperature, just so he could clear the mark far enough so he could get some Tylenol IMG_1167for his aches.  All day yesterday he was right around 99.9 degrees, which was enough to make him feel crappy but not high enough for Tylenol.  There a are pretty strict precursors for side effect treatments after the BMT.  The fever will come, but the body has to be left to it’s own device to bring on the fever.  Anything that might be a road block to that natural path, like Tylenol, is strictly taboo…no matter how bad the headache or body aches are.  But this is a hospital, so Oxi, anyone?

Today’s fever is a benchmark.  It means his counts are at zero so his body is in a little tailspin.  It’s expected.  The cancer cells are gone.  The remaining cells have been neutralized – phasers on stun!  The stem cells that were introduced last week have
been moving into their new digs and are getting settled.  The fever is the body’s way of saying, “WTF?”  And feeling like shit is what Steven is going to have to weather for the next 4 or 5 days!  Which is about when the C. diff will be confined to Gitmo, as well.  This is what we’ve been in training for!  I just wish Soldier Steven didn’t need a nap!

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widgetIn another few weeks I’ll be taking an extended intermittent leave from work so I can be in Gainesville with Steven after he’s released from the hospital.  We’re lucky that we have Hope Lodge as our halfway house headquarters before the doctors here allow us to head from home.  Unfortunately, we don’t know how long we’ll be at Hope Lodge, and that means I don’t know how much time I’ll be away from work.  If only the bills would stop coming!  If you can help us, we’d really appreciate it.

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A New Beginning

Stem Cell LabToday is the day.  On the transplant calendar it’s Day 0…To camels it Hump Daaaaaay…For everyone else, it’s just Wednesday! But to the entire 7th floor of Shands Cancer Hospital, today is the start of a new life of health.  Everyone is aware that today is our Day 0,  and I’ve been getting huge smiles and high-fives from all of the staff as I walk up and down the halls.  First thing this morning, I cleared out some of my stuff from Steven’s room and stowed it in the car.  There will be a constant parade of people in and out of here today, and I don’t want anyone tripping over a stray flip flop.

Steven’s stem cells are  coming back to him all cleaned up and defrosted after being frozen for almost a month since collection.  The bags are thawed one at a time as the prior bag gets infused.  This isn’t a pot roast here.  The stem cells don’t sit in a pile on the counter top getting poked every once in a while to see if it’s getting mushy!  And Stem Cells for Transplantnothing gets hurried along by a few minutes in the nuker.  The thawing part is just as precise and planned as the collection!  There are seven IV bags that will be transported from the Stem Cell lab.  That in itself it pomp and circumstance like you’ve never seen in a hospital.  Each bag delivered individually by a lab person.  Today, we have Amy and she’s smiling, happy and as excited as we are!  The ID numbers on the bags are read out loud to our infusion nurse du jour, Barbara, who double checks Steven’s hospital ID wrist band..each time.  This is the same procedure that was used when the lab picked up the bags during apheresis.  Except during collection, the bags were taken away in a very small Playmate cooler, like you see on TV when someone gets a new heart rushed in to the ER in the nick of time.  If the Playmate cooler was a briefcase, it would be like Ernst and Young delivering the envelope determining the winner of the Miss America pageant!  Today, Amy is bringing the bags cradled in her hands like a precious newborn, our personal Ernst and Young delivery gal bringing the crown to our Mr. America!

FullSizeRenderSteven got his pre-medication of Benadryl (which seems to be a staple in the drug pantry.  I think everyone gets Benedryl at some point during every hospital stay).  This time though, it was in an injection going right into his port, for quick absorbtion.  He also got injections of a steroid and a diuretic to flush out his system.  And then it began!

There is an odd odor that comes from the preservative that gets added to the stem cells in the lab.  During our education we  got the down-low on this particular oddity, only everyone described it differently.  We were warned that patients can sometimes get a strange taste in their mouths from the preservative that was akin to garlic, rotten fruit and a myriad of other unpleasant aromas.  Well, Steven and I can both smell something…it’s not bad and definitely not garlic.  I can’t even put my finger on what it Trifustion port in actionsmells like, but if I ever smell it again, it will be the aroma of a second chance and that’s a good thing.

The first bag seemed to take about 15 minutes.  The second bag looked smaller and drained in less time than it took to hook it up.  Barbara calls Amy near the end of each bag to start defrosting the next one.  And then it comes.  It seems that this will take up the rest of the morning and early afternoon.  And if the science of all this wasn’t so unbelievable, the whole day would be rather boring and anti-climactic.  For us, we’re just counting down the bags the same way we counted down the 16 doses of chemo that was infused a week ago.  Today is Day 0 and we’re looking to bag 0 to be Steven’s day for winning the Mr. America crown!  So with 6 bags down and the 7th  dripping now, I hope that crown is all shined up!

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Today Is Day – 2 (Minus 2)

IMG_1142That’s what they call it!  -2!  To everybody else in America, today is Memorial Day.  For us, it’s the last day of chemotherapy drugs pumping through Steven killing any stray cancer cells and all his bone marrow in preparation for Wednesday.  On the transplant calendar, Wednesday is Day 0 – his second birthday.  The day he gets all this new stem cells that will multiply within his cancer-free body, gradually growing a new cancer-free Steven from the inside out.

It’s taken so long to get here, yet it seems like a whirlwind now. We checked into Shands last Monday, and unfortunately I pretty much booted Steven out of the car and left.  Maybe it wasn’t quite that cold and quick, but it sure felt like it as I drove south like a deserter!  The delay in scheduling put a crimp in my appointment schedule at work, and I just couldn’t overload my design partner any worse than I already have.  She’s been a champ covering for my absences, but there comes a point where even Supergirl needs back-up!  So I waited with Steven while he got his blood tests to confirm that he was well enough to begin the procedure, got his dressing changed onIMG_1141 his tri-port and then got admitted into the hospital.  After a few short visits from different hospital people explaining all the ins and outs of the upcoming days, I left him in the capable and very caring hands of the 7th floor staff of the BMT wing.

And just as the schedule showed, chemotherapy started last Tuesday morning at 6 AM on the dot, henceforth known as Day -8.  From that starting point, Steven received 16 doses of Busulfan infusions which were timed out on a very specific schedule running on a 24 hour clock from Day -8 through Day -5.  Both the nurses and Steven were counting down at the completion of each infusion looking forward to when that IMG_1140chemical was completed.  We kept in contact by phone and text and each time another infusion was completed we gave ourselves a “High-Five” text marking the event.

I arrived in Steven’s room after work on the evening of Day -5.  He looked pretty good and I couldn’t believe how both happy and sad I was to see that his hair was growing back.  It was coming in so fast and looked so dense from the way it looked when I dropped him off!  I was happy because it meant his body was finally working the way it was supposed to be working after the RICE chemo he completed in March.  However, it was sad because late in the evening he would be finished with his 16 dose marathon of Busulifan and on to the next drug. Day -4 started his doses of Etopcide – the chemical guaranteed to make your hair fallIMG_1137 out…again.  And then Days -3 and -2 brought  a mixture of Etopcide and Cytoxan, famous for nausea, head and body aches and a plethora of other fun side effects.  As usual, though, Steven is really showing such dignity and strength that I can’t believe we’re almost though this.  So far, he’s been energetic enough to shower each morning and walk a few laps around the floor each day.  He’s using his typical scheduling prowess to make sure he gets the shower finished before the housekeeping staff comes to disinfect his room, and to walk his laps before it’s time to get hooked up to the IV pole again.  (Which is starting to look like we’re building our own robot with all the additional pumps that keep getting snapped on to deliver all the concoctions!)  These little things sound so incidental to IMG_1134most people, but on this wing, there are patients who won’t even get out of bed, so the nurses are extremely encouraging to the few masked men and women who try to get a little exercise and keep their lives as normal as possible.

So as I type, Steven is dozing as the IV pump quietly clicks in the background and IMG_1146mixes in with the beats of the country music playing on Steven’s phone.  The shades are up and the daylight streams in as we gaze over the tree tops to the prairie in the distance.  As far as hospitals go, this is pretty nice and I can’t even complain about the sleep-sofa I’ve been camping on for the weekend.  This has become our home away from home for now and we’re glad to be here.

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widgetSteven just won’t get that paper route I’ve been suggesting. So as I continue my IMG_1136entertaining writing projects about our adventures with Cancer, we’d be so very grateful if you’d visit our Go Fund Me Page and drop a donation in the kitty. While Steven was napping yesterday I made myself a spread sheet and organized all the medical bills and insurance statements.  I almost drowned in papers…literally!  According to the spread sheet…we really do need help!

JAMES MICHAEL MAHON

Yearbook Photo-MeToday is the birthday of one of my oldest friends on planet.  We met when I was 16 years old and was hired to work at the same part-time after-school job at which he was already employed.  We hit it off instantaneously because of our mutual joy in laughter, love of any play on words, elation with the exceptional double entendre and the supreme joy of the call back to any previous joke or wise crack.  Additionally, as male and female friends, we nurtured and sustained our relationship for over 45 years without ever seeing each other naked!

Over the years, there were times where we saw each other frequently, or where we went for long periods without even making time to chat.  Life sometimes got in the way.  But, when we did talk, Jimmy_Mwe were always blessed to be able to pick up mid-sentence from the last time we spoke.  It was one of the few absolute loves in my life.  And fucking cancer wrecked it all.

When his life long love, Mary called to tell me his was sick, he was already in hospice.  Cancer crept up on them with such a stealth trek that they never saw it coming.  And by the time they were aware of the the CLOUDS FROM PLANEmisfortune, it was too late to forge a defense.  It was colon cancer.  It was sneaky and fast.  And, it was over way too soon.

I have not had the words to even comment in the month plus in which Jim has been gone.  I am never at a loss for words.  This is as first for me…and for him too, I guess!  I’m sad, I’m pissed and I’m so sorry for Mary and Kathleen…and all rest of the family who I know are missing him even more than I.

The only positive thoughts I can entertain right now is that Jim’s Pond lily 4-3-11
legacy probably spans the globe.  He was one of the few people who could walk through Grand Central Station at rush hour and hear someone squeal, “Jimmy Mahon!”  So many people knew him and everyone who knew him loved him.  He was so much fun.  He always has a twinkle in his eye.  Even when he was incredibly irate and irritated about something…anything.  At those times he was even funnier without trying.  He could make

the most horrible situations entertaining.  And he could make the most common occurrences seem like a celebration.  Any given conversation with Jim always made his co-conspiritor feel like the most important person in the world.  That was his gift.  He KEY LARGO SEAStouched the heart of everyone he met.  And people always remembered him and thought of him as a friend.

His family misses him more that words can describe.  But his peripheral people, I’m sure, feel the same.  I know I do.  I wish he had more time.  But I’m so very glad and grateful for the time I did have him in and out of my life.  He was a great human and I know his legacy is that he affected the lives of everyone who ever came in contact with him.  He had a gift and we were all so lucky he shared that with us.

Happy Birthday, old friend!  I’ve loved you for years…without seeing you naked!

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widgetSteven just won’t get that paper route I’ve been suggesting. So 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 and drop a donation in the kitty. I kinda feel like a panhandler, but my company’s plan for personal emergencies is “Don’t Have One!” So…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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Cinco De Mayo

MULTI COLOR MARTINISHappy Cinco de Mayo Señores y Señoritas!  That’s all the Spanish I know…oh wait.  Yo tengo albondigas.  (I have meatballs…not a lot of use for that one)

I’m feeling a little silly right now because this week has been so regular.  Steven had a doctor’s check-in appointment on Monday.  I went to work, and he drove himself.  Just like real people do it!  Dr. Sprawls was ecstatic to hear all the reports on our trip to Shands.  And now, Steven is just hanging tight, building up his strength and enjoying being home.IMG_1109

He was a little tired after that 4th day of apheresis last Thursday.  They were able to collect just enough CD 34 cells to put us comfortably over the 2 million cell goal for the transplant.  But after they drained him like a vampire, they did a blood test on Friday and needed to juice him back up by tapping a keg in the blood bank.  That gave him enough energy to help me load up the car and head for home at the end of the day.  It’s always so surprising to me that it takes so long to put blood back IN to the body.  It comes out way faster!  2 units of blood took about 3-1/2 hours to transfuse.

IMG_1052I’m trying to keep Steven on a short leash just so he stays healthy and safe long enough to dump him back on the professionals at Shands.  It’s been exhausting trying to protect him from all the little germs and cooties that could way lay this adventure.  I know he’ll be fine once I get him there, so I’m considering wrapping him in bubble wrap until next week.

The hospital there is awesome and I’ve never felt so comfortable in a health care facility before.  It’s so clean and sterile without being creepy.  But is also very homey, even though it’s a huge 7 floor building.  I really can’t put my finger on what makes it so special there, although I know the PEOPLE really factor into it in a big way.  The medical staff smiles.  All of th-2them do it.  All the time.  By the end of the week, they knew us by name, knew our treatment plan and new Steven well enough to tease him about this proclivity for falling on his head.  One of the BMT coordinators even threatened him with a hockey helmet if he doesn’t stay out of trouble…or off the floor.  Now that we;re home, I’ve started calling him helmet head, because that’s the kind of care giver I am.

favoirte place to goWe have 6 more days at home to enjoy the beginning of the end of the last run in with chemo.  Food tastes good to him, he’s got enough energy to do a few things around the house, his hair is starting to grow back and he’s full of it.  I just want to enjoy all of this now as a reminder of what life will be like again after the precarious part of the BMT is over.  The best, which is yet to come, is right there on the horizon.  I can see it!

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Steven just won’t get that paper route I’ve been suggesting. So 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 and drop a donation in the kitty.  I kinda feel like a panhandler, but my company’s plan for personal emergencies is “Don’t Have One!”  So…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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