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.

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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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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

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

Everything You Want to Know About a Bone Marrow Transplant…But Didn’t Know Who to Ask

th-2One of the scariest things about this bone marrow transplant (BMT) was not knowing what it would be like.  You can read and research, you can ask and you can even get some answers.  But it’s not the same as it is when you are right in the moment.  I was lucky enough to be paired with a BMT survivor through BMT InfoNet.  Jim is about Steven’s age and went through a transplant 10 years ago.  We spoke on the phone and he answered all my questions.  And I felt better.

Through no fault of Jim’s though, I find that as we go through the process, many of his answers were a little blurry.  And then it hit me…this is like having a baby.  All mothers will tell you the birthing process is uncomfortable, but worth every minute of it.  But if you’ve ever been near a preggo ready to squirt one out, reality is about the moaning, yelling, cursing and sweating.   It makes you wonder how they can tell you that childbirth is the most beautiful thing in the world.  What happens is that mothers are immediately fogged over as soon as the baby is placed in Mom’s arms.  In other words, the they can tell you what they think it was like, but their reality has been already colored by the joy of the event and what they remember is very blurry!  The joy of a second chance at good health and a happy life is the same!

So as a public service, and because I’m such a giver, I’m going to try to document this as we go.  I’ll tellSteven & Dr Sprawls you what really happens, how it looks and how Steven tells me he feels for the next couple of months.  Hopefully this will help the next patient standing at the BMT doorway wondering what’s on the other side.

Lets do a quick pre-quel, as they do in the movie business.  This time Steven’s cancer came back and he had 4 rounds Rituxan & bendamustine chemo that seemed like it worked after the first two rounds, and then showed that it didn’t work after the scan following the second two.  So it was time to talk BMT.  He then had 2 rounds of RICE.

RICE sucks. It works, but it sucks.  I’m not trying to scare you but the RICE was a lot harder on him than the R+CHOPS.  Although for us, his cancer was progressing pretty aggressively before we got to the first round, so that could have had something to do with the side effects.  Quite frankly, the second round of RICE went a whole lot easier because the cancer was knocked out after round 1!  But the oncology way always seems to be “one more for good measure”.  Originally we talked about 4 rounds of RICE…but it worked so well that we were thrilled to skate by with 2 rounds.  The PET scan after that second round showed no cancer in his body…finally!

BEE LINESo that brings us to our last trip up here to Shands.  It was really just an in-depth evaluation.  But know that when I say “in-depth” I mean I was happy to get out without a colonoscopy!  We were busy almost every minute of all three days.  Nurses drew blood every morning.  A quicky, right-in-the-exam-room bone marrow biopsy came next.  They needed to test his bone marrow just to make sure there were no funky cells, that his bone marrow was normal and that he still had some and it hadn’t turned into Play Doh after all the chemicals that have been pumped through him in the last 10 years!  I was surprised that they just gave him a happy pill, a few dentist type shots near the site and boo-ya, we’re going in!

We ended the day with a 3 hour talky-talky visit with a case worker.  Gale couldn’t have been nicer, and it turned out she was a 15 year BMT survivor, so it was a blessing to meet her.  But we talked about EVERYTHING.  Family, friends, work, home, pets. vacations, money, religion, marriage(s), mental health and every sidebar you can think of that would pertain to any of those topics.  She took notes, and by the time I realized this was all going in a report, it was too late to stop wise cracking! Luckily, she laughed at all the stupid stuff I said, but she did tip me off to the afternoon appointment for day 2.  A real shrink.  She didn’t say I should shut my pie hole, but I got the message!

Day 2 started with more blood & pee tests (for him…not me) and then came the really SCARY part.  Cue  the creepy music because we were about to meet the Finance Coordinator!  This time block on our agenda put fear in my veins for the entire week preceding the appointment, but it was surprisingly comforting  when it came around.  Carolyn had already researched our insurance, explained to us why it was so crappy and told us not to worry about anything.  She went over a bunch of forms and filled in every blank in order to get us all the benefits she could possibly squeeze out of every avenue.  It was surprisingly comforting to feel like we had a new person on our financial team of 1 (me).  I have recently learned that some hospital billing people, like Stink Eye, can be heartless.  But there are caring, helpful coordinators in every facility.  And if you are having a problem with yours, ask to speak to someone else.  Ask for a manager.  Ask them to cut it out.  You can work through all the billing crap, but you have to ask.  It’s rare that it starts off the way it has at Shands, but I’ll take it.  We deserve the break!

Our next appointment was more like a class than a meeting.  We met a research nurse whose purpose was to educate us on the entire process, go over ALL the forms Steven would be signing with the doctor on the following day and to make sure we understood everything.  It took over an hour and I was thankful there wasn’t a pop quiz.  But we did get homework.  We were given copies of all the forms that Steven would be signing, and told to look them over and call her if we found anything that needed further explanation.  She gave us a short lunch break so we made a bee line to the hospital cafe for some eats!

After lunch we met with the BMT coordinator Carey who went over the scheduling ins and outs with explanations of why all the ins and outs were in place with humor and ease.  It really is easier to follow rules when you understand why.  And then we finished up with a tour of the BMT wing, we saw a room and bath, the futon where I could sleep, where the refrigerated snacks and drinks are located, met nurses, yukked it up and got one more warning…and then we were off to see the shrink.

Steven was taken back ALONE, and I was relieved at first…and then worried the more I thought about it. We were told not to joke around, and that was usually pointed at me.  But now that Steven thinks he’s funny by osmosis, I kept cringing at what might be happening.  But after 45 minutes, she returned him to me and took me back for a quick chat.  She really just wanted us to understand what we were getting into, how this was going to affect our lives and most importantly to make sure we were both up for the challenge.  She asked a few questions based on things Steven discussed and we were done.  Apparently we passed!

Hope LodgeThe third day was another full battery of tests for Steven.  More blood and pee, chest X-ray, ECHO / EKG, a pulmonary test and probably more stuff that we didn’t even realize were being tested.  We had a break before we met with our doctor and were able to squeeze in a mandatory visit to The American Cancer Society Hope Lodge.  Carey, our BMT coordinator hooked us up with this amazing opportunity.  The ACS has a few of these facilities across the US in various towns.  It is a godsend housing opportunity where the ACS puts patients and their caregivers up, FOR FREE, while undergoing cancer treatment.  Again, lots of rules. But definitely a gift!  If you need to get treatment outside of your normal commuting area, check out the HOPE LODGE IMG_1061opportunity.  We were accepted as guest/patient and are staying here now.  This location is about 2 blocks from the hospital.  It’s walkable for a regular person.  For a chemo patient without a car, there is a van that will take you to your appointments.  And there is a feeling of camaraderie because in every couple, there’s one bald partner…if you know what I mean.  Not for nuthin’ but the Hope Garden doesn’t suck either…if you’re in to that peace and tranquility Zen thing!

The last part of the evaluation process was meeting with our newest oncologist.  Dr. Norkin went over all IMG_1056the test results, told us that a few more would take time to get back, but it looked like we were right on track to move forward.  Steven signed the official documents giving everybody permission to do everything necessary to keep him alive, and we headed home.

After a week off to organize life at home, we checked in to Hope Lodge yesterday after Steve ‘s 8 AM injection at Shands.  Steven is getting Neupogen shots and will continue to get them at 8 AM and 6 PM every day for a total of 8 days.  During the last 4 days of the series, Steven will be going through apheresis to collect stem cells for his autologous stem cell transplant (which is the same thing as a bone marrow transplant).

I’ll fill you in as we go through it…and now you’re up to speed.  Except for today.  We arrived at Shands IMG_1072waaaaaaay before the butt crack of dawn today.  He was taken into the outpatient surgery unit and as soon as we walked through the doors and I smelled that hospital sanitized OR adjacent smell, I started getting woozy.  I hate this part.  Steven, on the other hand, was totally enthralled with a new piece of information that he learned today.  Being a teaching hospital, Shands has been awesome with cutting age technology and procedures.  We have a phone app for Steven’s interactions with All Things Shands.  The app updates continually with test results, appointments, drug lists and any other thing we might want at our fingertips.  The hospital and lab equipment seem to be the latest and the greatest, but the thing that Steven was most impressed with…the newest toy that he now wants for Christmas…and an appliance that is sure to become the punch line to many a joke is:

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It’s called Bair Paws and it’s like an old style bonnet-type hair dryer.  And whoever came up with this is IMG_1071genius because who doesn’t love getting hot air blown up his / her skirt?

And that is exactly what you see.  There is a hole in the hospital gown that connects to the hose and warm air is blown, literally, up you dress…or if you turn over, up your ass!  And as soon as it was hooked up, Steven decided this was a little slice of heaven on earth and couldn’t have cared less about what was going to happen next, as long as they didn’t take his hot air machine away!  So I was escorted out of the holding room, and Steven and his hot air machine took a little ride into “twilight”, the anesthesia of the out-patient.  I got a cup of coffee, started working on this blog post and before I knew it, the doctor was out in the waiting room telling me that they were done, Steven was great and that he was already coming back to the real world.

By 9:30 am he was awake finished and the proud owner of a new tri-fusion port.  It’s the Mother of Chemo ports and he’d be the king of the keg party if he had the energy for that type of thing.  This is the magic portal into his new life…makes it seem not so yucky looking, doesn’t it?  BTW – the hang-y things stay.  He’s now got a three-legged octopus hanging off his tittallery region!  Suddenly nipple piercing seems wimpy!IMG_1073

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