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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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

It’s Going To Be Alright

You’d think that right now I’d be either crying, freaking out or crawling on my belly like a reptile looking for a stray Xanax under the sofa. If you’re wondering why I’d look for Xanax on the floor, keep reading!

IMG_0936Steven had an unexpected visit to Dr. Sprawls today so he made arrangements for a friend to take him. That was a huge relief to me, yet I was a little apprehensive that Steven would be able to get his shit together well enough to get out of the house without me. He’s been like a dementia patient ever since he got out of the hospital. If I hadn’t researched the chemo he was given to know the side effects, I would have thought that they broke him!

Contrary to popular belief, I really don’t like nagging. I know that sounds weird because I’m so good at it! But just because you’re good at something doesn’t mean you want that to rule your life. I’m also good at sleeping but I can’t do it all day long!

So when I left for work this morning I did not give Steven the list of dos IMG_0946and don’ts for leaving the house. Do slide the pocket door in the hallway closed, so the dogs can’t get down the hall to the bedrooms. Do slide the pocket door to the laundry room closed so they don’t pull all the tee shirts on the dry rack off the bar, out the dog door and into the back yard. And do make sure when you come home that you have New York (Steven’s nickname for his bud) put the dogs in Whippet World before you try to get the wheelchair back in the house.  Oh yeah!  DON’T forget to do everything I told you to DO!

Shoulda, coulda woulda!

I had Steven call me when he got into the “little room” with the doctor. He put me on speaker phone and it was great. I was able to “be there” for the visit and to hear all the updates. Just for the record, the doctor was ecstatic about the progress from the first round of chemo. Steven’s lymph nodes and tumors are “remarkably, hugely, greatly” smaller. Doctor’s words, so YAY!

Steven  got some new meds for the extreme, debilitating tiredness and a shot because his red blood count is 0. Zero. Zip. Nada. I’m not a lab tech but I do know that every aspect of the blood test has some number attached to it. The only Zero we’re looking for is in the cancer department! Not so much with the blood! So a shot of Procrit and Steven was glad to be on his way home.

IMG_0318I texted him to let me know when he was safe at home and back in bed and he phoned just moments later. I could hear the panic so high that I couldn’t understand the words he was trying to get out. On the third time around I finally got it. “Zoey’s gone.” She got out as he was trying to get in. What did he expect. One Whippet is faster than any human over 50. Three Whippets are a team that guarantee that someone’s going to make a break for it. I asked if New York was looking for her and he could barely get the yes out as he tried to break part 2 of the saga to me. “Pills everywhere! They got into my med box. They took all my pills. OMG!!! He’s got everything from Morphine to stool softeners. None of it vet approved and I was not sure which would be worse!  And I wasn’t sure what “took them” meant either.  Took them?  Like Jimi Hendrix?  Or took them, like Bonnie and Clyde? As I ran out of my office I texted “LOCK THEM IN WHIPPET WORLD,” in CAPS. He replied, “I cannot.” OMG!!!  That, my friends, is not him being difficult. That’s cancer tired!  I’ve been watching it all week and it’s awful.  His body just doesn’t want to work for him.BEE LINE

I drove home from Orlando with God riding shotgun! I miraculously slowed several times seconds before spotting a Florida Highway Patrol car. It made me laugh a little to think I could never explain what was REALLY happening to make me speed, because who would believe it? I was also amused at how calm I was. I was speeding, but I was in control. I knew Steven was freaking out, too weak to deal with any of it, and I managed to assure him that it would all be fine.  And I believed it.  I’d say I was calmly being nervous.  I know that doesn’t make sense, but it fits.

I drove around Satellite Beach in the exact pattern I travel when I walk the girls. I looked down the side streets, in the shade under the trees and asked every crossing guard if she’d seen my white dog. I finally drove home with the hope that Zoey would be waiting there. She was not. I was taken aback when I got in the house. It looked like a party scene from Valley of the Dolls! There were handfuls (or pawfuls) of tablets, caplets, and plastic drug store bottles with labels chewed off and teeth marks aerating the containers strewn everywhere. I should have taken a photo, because it was something to behold. Maritza and Lucy were finally locked in Whippet even though Steven told me he could not. He found that little bit of residual energy to keep them safe from themselves, and I realized that since I had been driving for over an hour, if they had actually eaten any of the pills, they would either be in comas or be projectile crapping a Jackson Pollack design through the crate!

I was just putting on sneakers when my phone rang. A vet’s office in Indian Harbour Beach, the abutting town, gave me the phone number of Amy who found Zoey. The white dog was running around nekked (without her collar) so she had no ID, but that microchip that we had implanted had all the info in a one second scan. Amy couldn’t have been nicer and since she was leaving the vet’s office and already had Zoey in her car, she delivered her to my doorstep.

I banished Zoey to Whippet world with the others and she was glad to go in.  Her little adventure must have been exhausting.  They found her about 7 miles away!  And then I started cleaning up the pills and bottles. And I should have been a mess or pissed or numb, but I really believed it when I told Steven it would be alright. I knew I could take care of it as soon as I got home.  And now I really feel better because I have that same feeling about him!  This isn’t going to be fun, but it is doable.  Hopefully with no projectile crapping, thank you very much.

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widgetIf you want to help me take more time away from work and home caring for Tumor Boy and the Whippet Circus, 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 when I say this crew needs me, I’m sure you’ll agree that I’m the glue that holds this crazy group together!

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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