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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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