It’s Good to Be Back

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OK…I’m going to try this. It’s been so long since I posted anything that I’m curious about my ability to write a cohesive post. I thought I’d just start with a topic, but then I decided that playing catch-up was probably in order for my few faithful readers. So for today, let me nutshell this last hiatus and then next time I can just start blabbering.

The book I bragged about is still in my head. A decent amount ended up on paper but I let myself get tangled in a big messy knot after talking with an old comedian friend about writing the book. He’s written a few and suggested a book for me to read about writing a book. For future reference this is what one does (or what I do) when one feels insecure about a new thing. So I bought the book and began to read. Big mistake! Both he and the alleged instructional book suggested IMG_1688within the first few pages that “book characters have way more sex than you have in real life.” Neither my old acquaintance nor the recommended book have any concept of the whole lymphoma thing, a stem cell transplant or any life altering events that are attached. We’ve had way more puke that you have in real life, which is hardly a good parallel worth expanding upon! The book fell to the wayside as did the old comedian who was going to call me every week to cheerlead but stopped after the initial “RAH”. For future reference, the book is not dead just in an induced coma for now.

img_1268Then there was the broken foot that happened on the job, which lead to my surprise phone call from the employer suggesting we “separate” during my recovery. That phone call from him lead to a phone call by me to a lawyer who then requested that I refrain from any comments in written form about said employer, accident, injury or anything that I might think was funny. I learned that you can be let go from a job while out on Workers Comp, so allow me to suggest that you write that down as something to be remembered in your life. NO one I know thought it was legal. Unfortunately, the only thing my silence earned me was a foot that was semi-healed “as good as it would get at my age.” Which, by the way, is only worth $9000 in settlement money. So if you’re gonna break something at work, do it before you hit your 60’s!  After that, the settlement is short lived and the limp is forever.

LIVING ROOM 2During the time I was unable to walk, Steven and I finally came to grips with the fact that our house was way too much for either of us to handle alone. I have been struggling for years during his down times and chemo with upkeep, barely keeping the dust from overtaking the overflowing laundry basket. Unfortunately the stem cell transplant left him with way less stamina than ever before and he MASTER BATH 1couldn’t pick up the slack at all. So we finally had that tough conversation about selling the house and finding a more manageable situation. Being the stubborn designer that I am, I fought him tooth and nail on it at first. That house finally had my artistic touch on two incredibly designed spa bathrooms of my dreams and I’d been waiting for 20 years to start on the blank canvas known as the kitchen. But now with no design center MASTER BATH 2connections and no real job on the horizon for gimpy old me, Steven finally convinced me that the project needed to be turned over to someone willing to dump a pile of cash into the place and unfortunately that just was not US. Hobbling in to interviews like Grandpappy Amos (Google it pre-Baby Boomers) did not net me a job so it was time to sell.

 

Again I was requested to keep my fingers off the keyboard and my pie hole shut as we HALL BATH 1went through the selling process. To further add insult to injury, I began the long, hard, emotional task of going through all our earthly possessions and weeding out the things would we would NOT be able to take with us to our new smaller abode. We found a lovely luxury apartment in Orlando, meaning we were giving up our beach life. Steven was smart enough to know that THE ONE AND ONLY THING that would make me go peacefully was finding a place less than 8 miles from Alexis’s house. And on February 23, 2017 just two weeks shy of 20 years in that house, we loaded up the truck and moved to the big city.

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So we have a new life. We also have a new family member. We decided that we missed fullsizeoutput_75having a canine daughter and since we were moving, why not get one to make sure we had any house breaking worked out on the old carpet. No IMG_1870judgements, please. They buyer was planning on ripping out the carpets and his realtor was such a bitch that is was the small amount of pleasure necessary to get me through it. Besides, The Unsinkable Molly Brown-Dog was a 2 year old rescue who came house broken and a little psychotic, so she fits in just great. You can check her out on Face Book to get a taste of her antics, but for the most part she’s exactly what we both needed to add that extra zip into our lives.

7f637948030b231d9738fa7833a4ce17bf5eeb0dI know I’ll have to pick up a little part time work after the summer, because Pie-Chart Boy is back on the job and he’s got our fixed income budget worked out for the next 10 years. It’s the one part of Steven that I just don’t get. I’m not an analytical maniac like he is, so even though I’m a fan of a good spread sheet, he takes it past plain spread sheets to pie charts, graphs and color coded itemized formula inserts. But that keeps him busy as he studies Fox thBusiness News daily and investing our house sale profits to allow me to stay out of the workplace.  All the while I get to babysit Lil’ G several times a week and hang with Alexis and him on her days off. We now do those Mother / Daughter things we were never near enough to do. We grocery shop together, do lunches, pedicures, coffee clatches, walk the malls and generally just yuck it up while we both watch Lil’ G grow. It’s FUCKING AWESOME!

IMG_1879And since we have no back yard, but a beautiful campus here at the luxury complex, Steven is never alone and never left to sleep away the day thanks to the very playful Molly Min-Pin.

All in all life is great. Except for this one thing. Steven’s labs in March showed a rising in his LDH blood test. This last test in late June show them up even more. According to Dr. Sprawls, the levels are still in a normal range “FOR STEVEN.”  However we’ve been down this road before. If you are lucky enough to be unaware of this particular blood test – here you go:

An elevated level of LD may be seen with:
Hemolytic anemia – NOT
Pernicious anemia – NOT
Infections such as infectious mononucleosis (mono), meningitis, encephalitis, HIV – ABSOLUTELY NOT OR I’D BE OOZING SOMETHING, TOO
Sepsis – DEFINITELY NOT
Intestinal and lung (pulmonary) infarction – NOPE
Acute kidney disease – UH…NO
Acute liver disease – HOW HIS LIVER EVEN WORKS IS A MIRACLE, BUT NO
Acute muscle injury – POSSIBLE, MOVING, LIFTING & FALLING ON HIS ASS A BAZILLION TIMES HAVE BEATEN HIM UP PRETTY GOOD
Pancreatitis – NOPE
Bone fractures – NOTHING BROKEN
Testicular cancer – TESTICLES HANG LOW BUT NO CANCER
LYMPHOMA or other cancers –     →HERE WE GO!←

And so I’m back! A word to the wise. Don’t try to tell us not to jump to conclusions. We well know that this could be nothing. It also could be something. But we both know that when we try to keep our heads up our asses we don’t like the smell. So Steven is facing this head on, ass free and I am too. And while we wait for next quarter’s blood tests we’re enjoying no lawns to keep, handymen that run to us to fix every burnt out light bulb and my favorite neighbors who are only 8 miles away.  For whatever reason, I’m glad to be back!

I’m Writing a Book

MacWriter-APPLEphotoOK – I wrote it…not the book.  Just those words, which carry the intent that I’m gonna…write the book.   I’m doing this for a number of reasons but I’m telling you about it for only one reason – to keep me honest and hold me to it.  So buckle up and please, please. please come along with me for this ride.  I want to drive and I want you with me.

I’ve always thought I was destined to write a book and I’ve included the the phrase, “I know I’ve got a good book in me,” to countless people in thousands of conversations over the years.  But jobs, life, fun, sickness, health, child care, laundry, shopping, shaving my legs and multitudes of “good” reasons have always gotten in the way.  The truth of the matter is that the only real reason was laziness and fear.  I could have scraped together the time to write, hell…I’m writing now!  I just never wanted to take the plunge into the deep end of the writing pool because it seemed so… deep.   I can swim, but I’d rather just float…with a drink in my hand and my eyes closed.  Now, suddenly I don’t think I’ll drown.  I’m ready to do this.

Don’t ask me why.  I’m not exactly sure myself.  It could be, and probably is, a culmination of all the events that have led me to now.  It’s also a ton of little tiny signs that have converged into a tipping point becoming so obvious that I can no longer ignore them.  And then there’s this blog.  There are probably 3  entire books worth of posts in here, some of which will probably be, or be the basis of, a chapter or 10.

I believe in God.  I was brought up in a severely Catholic situation.  Catholic grammar Pond lily 4-3-11school, an all-girls Catholic high school and a Catholic college.  The only reason I didn’t end up as a nun is…well all the reasons.  Sex was probably the biggest.  But the costumes being black and I’m a spring who shouldn’t wear black, and the praying thing and my knee problems and the behaving all humble and… all that.  Let’s face it, just because I could recite the Mass in Latin doesn’t mean I would have been accepted into the convent.  But the point is that I just remember all nuns saying they heard God call them.  I’ve spent my entire life in close proximity to dozens of phones.  I never got the call.  Until this.  I think I got a writing call.

Yearbook Photo-MeCatholicism aside, my relationship with God has mellowed over the years.  For very personal reasons that are between me and Him, I was put in a position that forced my hand because of the strict rules the Catholics of the 1970s.  They liked to play hardball.  In order to marry a non-Catholic I was forced to make promises with which I took exception.  I had a long chat with God.  I assured him that I would get married in a church to make my family happy.  But I also assured him that I thought the priestly power play was just as skeevy as the fee I had to send to the Pope for papal permission to let me marry a rat-bastard Christian Scientist.  I told him if the parish was going to force me into a corner,  my Catholic days would be over.  And they were.

So for years my relationship with God has been pretty loose-goosey.  I actually really like it img_1435this way.  When I moved to Florida I realized that God doesn’t live in Churches.  Have you seen a sunrise at the beach.  That’s where God lives!  He owns oceanfront.  And when I talk to Him, which I do A LOT, I talk to Him the same way I talk to friends.  He knows I use the F-word.  He knows I’m sarcastic and bitchy.  He also knows I’m as dense as a fat chick in Extra-Small Spanx!  So over the years I have begged for signs when I’m at a crossroads.  And He humors me with HUGE effing signs when He’s finally decided to shoot me a map.  So for the past six months I’ve been praying every morning as I would drive to the crappiest job ever.  Nothing…until…

  • I sprained my ankle, tore a ligament and broke a bone in my foot while working.  Not sure about this but I think maybe God tripped me.  This was too stupid of an accident for me.  I’m pretty careful.  I know I have been the family breadwinner and golden goose since we started the Lymphoma Limbo in 2004.  I’ve changed a lot in order to protect myself just so I could continue in that responsibility.  This injury was freaky and the only way I could start making sense was when I tried to… WRITE about it!
  • I got fired from a crappy job, which in retrospect was the worst one I’ve had since a 4 hour stint as a dressing room attendant in a Gimbels department store in NY. Even though the Gimbels gig was a part-time college job, I wouldn’t put up with crap for a whole 8 hour day. I went out to lunch and found a new job…a better job….a more fun job.  Instead of clocking back in, I quit after 4 hours and couldn’t have been happier.  That had been my M.O. for the last 42 years so keeping a crappy job was WAY out of character for me.  I didn’t even realize that until I dissected it – in WRITING
  • I used to be able to get jobs really fast and pretty easily.  When I found something I wanted I was good about landing it.  Suddenly I can’t even land an interview.  And if and when I do, I damn sure know they’re going to be really impressed when they see the boot!  What about that?  Answer – It’s gotta be time!  Sit back, shut up and WRITE
  • My son-in-law makes little videos on a FB site and I want to watch them but can’t.  All his positive jibber-jabber has been pissing me off lately.  I’m trying to wallow in pity and self-help advice from a thirty-something is irritating.  But I accidentally clicked on him the other day and before I could stop it I heard him say, “What would you do if you knew you couldn’t fail?”  “Screw you Matt!  Blah-Blah-Blah…I can’t hear you!”  But I did hear him and immediately my mind clicked….Answer – WRITE a book.
  • Finally, there’s nothing that interests me on the entire world wide web, I can’t find a book I want to read and all 6000 channels on my TV suck.  I’m so bored and yet usually I have no problem entertaining myself.  Why now?  How can I occupy my time?  Answer – WRITE

So there you go, those are my signs.  And I think rather than wallowing in my own crap any more, it’s time I put the Can in Cancer.  So here’s the Premise:

Sept. Lymphoma Awareness monthCancer touches everyone. Yet it still has the stigma of leprosy and AIDS combined with the death sentence of a convicted criminal. People bristle when they hear the word; saying, “Cancer” evokes the look of pity, horror or uncomfortable dismissal from bystanders. It’s an awful disease. It’s scary, it’s unpleasant and it’s all around us. We need to learn to embrace its being, take a deep breath and look at it face on. We need to be able to make fun of it, to take away its power. And to use the word in conversation as a piece of news just like pregnancy, a tax audit or a sale at Macy’s. It’s something that’s going on in our lives. It’s something that effects us. It’s something about which many people need to talk. And the response doesn’t ever need a story that ends in a cemetery. You wouldn’t talk miscarriages with a newly pregnant woman, or jail time with an unfortunate taxpayer. And you certainly wouldn’t reminisce about a relative getting hit by a bus on the way to the semi-annual white sale at Macy’s. It needs to be the same with cancer. Scientists and doctors are working non-stop to obliterate the disease. We need to obliterate the stigma as well. Let’s make America great again and let’s make cancer fun again.

What do you think.  This one time, I’m asking you to use the LIKE BUTTON at the bottom like-buttonof the post if you’re on board.  And more importantly, please just this once, make use of the  “Comments” option below to tell me what you think, what you suggest, want you want me to cover…or anything you can think of that I should know.  Share all your thoughts.  I really want to know.  Share with any friends who you think will have an opinion and get me the feedback I need!

I’m going to do this and I want you to be part of it, so hop in and buckle up.  I told you before, I’m driving!

 

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 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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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:

IMG_1070

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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Extreme Makeover – Cancer Edition

IMG_0859 What a week it’s been.  Last Sunday I drove to Orlando and dropped all three girl dogs off with my wonderful son-in-law who took the bullet for me and did what I could not bear to do.  He drove to the west coast of Florida to relocate my beloved girl dogs.  I was able to send Lucy back to the breeder who made her, and Maritza and Zoey were welcomed to join her for placement into homes in which they would receive the attention they deserve.  It was the right thing to do, but that didn’t make it feel any better.  I couldn’t even look in the rear view mirror on the way to Matt, because I felt like I’d turn around and race home if I made eye contact with any one of them.  I barely remember transferring them to his car, ISteven in bed with mask do remember him giving me a huge bear hug, which just made me crack.  I certainly don’t remember driving home.  I do remember the huge pile of damp Kleenex on the seat next to me that I had to dump in the trash, so I must have been bawling my eyes out.  I just keep trying to focus on the important reason for the decision.  I need to channel all my energy, love and caring into keeping Steven well.  He was so beat up when he arrived in the hospital that they had to mask him up to get him to the room without anyone sharing a germ with him!

IMG_0972Steven was in really bad shape for the first 4 days in the hospital.  He received what seemed like gallons of blood, IV drips of antibiotics, potassium, platelets and probably a little Spic & Span to clean up his blood.  It took a couple of days for his skin to go from grey to white to pink to normal.  And every time he seemed to feel a little energy, he’d get wiped out from overzealously texting me.  By Wednesday night I was starting to get really nervous.  His progress seemed so slow that I thought he’d be in the big house forever!  I could only visit him for about an hour IMG_0975each evening until he was shooing me off because he just didn’t have the energy to stay alert.

I was so worried that I texted Dr. Sprawls and asked him to call me.  Earlier in the week I was able to get a speakerphone visit with him and Steven one morning during rounds.  The doc was very pleased with Steven’s progress, but the rest of my updates were via Steven which was really messing me up.  Chemo brain is a lot like Brian Williams…inaccurate reporting!  Again the doctor told me that this was all pretty normal, albeit pretty sucky.  He told me I didn’t need to worry about Steven’s infection any more because it was under control even if it seemed to be moving out slowly.  Of course that only made me ask him to tell me what I should worry about.  I wish I could stop thinking that every report was a trick answer!  The doctor told me I should concentrate on worrying about giving up my dogs until I got that under control.  Somehow, his understanding of the emotional overload I’ve been under made me feel better about all of it.

Hospital movie seatsAnd then Steven asked me on a date.  On Thursday he called before I left for work and asked me to stop on the way to see him to pick up some non-hospital food for me so we could have dinner together. He texted me throughout the day, so proud of the plans he was making.  We were going to watch a movie after dinner so he arranged moving seating hospital style for us!  We haven’t had a date for a while, so this was a pretty sweet gesture under the circumstances!  And just so I wouldn’t freak me out when I arrived, he broke the news viaSteven selfie-hair falling out photo – Oh, yeah!  My hair is falling out!

I sat across the room a bit so I didn’t have to wear a mask, and we ate and talked like normal people…in hospital gowns.  His of the patient variety and mine of the quarantine variety.  We we going to watch a movie after dinner, but first I had big date plans for him.  I suited up completely with mask and gloves, moved him over to the other side of the room to a chair, IMG_0973draped him in towels and shaved his head.  If his hair was starting to fall out and his pillow always looked like a drain in a high school locker room shower, I can fix that!  Hairy pillow – Not sexy!  Doing the honors was priceless!

Steven looked good bald in 2004 and he still looks pretty dapper to me.  He took it like a champ and even let me take some mug shots.  It was a little hard for him to yuk it up with me because all the buzzing gave him a massive headache.  And he tires pretty easy so the makeover seemed like a day’s work IMG_0978to him.  Of course the nursing staff has been very attentive to him since they all feel pretty proud that he didn’t let him kick the bucket during his first 24 hours there!  That always seems to bring a great togetherness to the group, wouldn’t you say?  So his favorite nurse, Hannah, just poked her head in as we were finishing and asked if he was having any pain.  He told her he had a pretty bad headache and she was back with some horse tranquilizers within minutes.  So there went the movie.  We only had about 30 minutes in the chairs, holding hand to glove…and then he conked out.  I helped him back into bed before he started to go down for the count and I slipped out the door, pretty grateful for the time we had.

IMG_0979So what a difference a week makes.  He’s coming home tomorrow, he feels better and can actually walk and get up by himself.  That’s huge!  I put him in the wheelchair and rolled him out of here last Friday.  I had dogs to round up and secure so we could get out the door and a dozen things that needed to be done for them before we could leave.  He was in pain, weak and hanging on by a thread.  And tomorrow he’ll be back to a quiet house, with hopefully fewer cooties, definitely safer for padding around the floor without tripping on a squeaky toy, bone or stealth girl dog, and he’ll have my complete attention.

What a makeover it’s been.  And we’re still just starting!

 

If you want to help me take more time away from work and have more time home caring for Tumor Boy widgetand 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