All Dressed Up with No Place to Go

IMG_2101The laundry is all done, the fridge is almost empty, the minor details of life are all on auto-pay and I’m ready for our little mini vacation.  Steven has been literally begging me for months to go on a vacation to the mountains.  I’ve tried to talk him out of it a hundred times.  He wanted to go to Gatlinburg, Tennessee for some unknown reason.  I could give a rat’s ass about most of Tennessee.  I used to work regularly at a few comedy clubs in Tennessee back image95496121in the day and I have bad memories of drunk women incoherently heckling and simultaneously projectile vomiting.  It seems needless to say that I have no desire to visit Tennessee.  My shoes cringe at the thought!  So it’s been painful for me to be hammered for months about getting away for this idyllic holiday to a place I regard as a little slice of hell.

y4m58PGrXQCRrNBNDGdnPpNVCIn5Hrl6U3ieE-AminrVDxOOdBkDZaP2JxnqLf3fOZpI4eBBzn1QPgEsvagr9Cl9mRDiEu6Dfbm4zM7KXtX-B9UcQmdt-vQnKWS_vU8to2aavmJ2fjASWzjqW2bXSKfs63XYfl8gbUmn6m2gyWqcrMrHVvtwxWDDXQuite a few weeks ago I was reading Yahoo News and a click lead to another click which put me on a page about the big Hemlock Festival this weekend in Dahlonega, Georgia.  For whatever reason, it seemed like fun.  A festival celebrating a tree could not be more innocuous.  I could really get into a perfect low-key getaway.  The location seemed perfect as well.  It’s just the other side of the Blue Ridge Mountains that had become Steven’s new fixation.  It was quite a few hours shorter in drive time than Tennessee…and as far as I knew, no projectile vomiting.  So I summoned Steven to Molly’s Porch for a quick family meeting and vacation plans were set in motion.  I requested official time off from Nana duty, and Steven quickly went about making reservations in a pet-friendly hotel and began his due diligence in compiling the historical, meteorological and socio-economic background check on the area.  He LOVES. LOVES, LOVES the planning part of the vacation experience.

Compliments of Steven,  I’ve been getting local temperature and other oddball tidbits of fullsizeoutput_60eDahlonega, Georgia factoids sent to my phone about 4-5 times a week for the past month.  I’ve also been getting snapshots of a live camera somewhere in the town showing me the state of the leaves on the trees, so I can keep up with the fall foliage color change…BTW- it hasn’t happened yet.  I’ve also received text updates from Steven noting celebrities who hail from that area so I can keep my eyes peeled while walking around town lest I trip on a famous person.  And I even got an email from him about the state of the ground cover where the festival is held because the out of town festival is in a grassy area that might be muddy if the weather is too wet prior to Hemlock weekend.   We are prepared for weather dips into the 30s with layers of clothing to protect our delicate Florida anatomy (I use the singular “anatomy” because I’m always warm and Molly comes standard wearing a coat so really, we’re talking about Steven…THE ONLY ONE WHO WANTS TO GO TO THE FUCKING MOUNTAINS!!!)

IMG_2313Nevertheless, we are ready to Rock and Roll.  Today is Wednesday.  I have a little Nana duty later on today and then tomorrow I have the day to get our stuff together for a nice, leisurely trip to…NO WHERE.  Because I always forget that Steven loves to plan vacations but has a hard time going on vacations.  No.  Steven loves to plan trips but has a hard time going on trips.  No.  Steven loves to plan leaving the house but has a hard time leaving the house.  YES!  That’s it!  That’s exactly it.  This morning he informed me he really, really, really doesn’t want to go.

Welcome back to one of the recurring themes in our life after cancer, lymphoma, a stem FullSizeRendercell transplant, chemotherapy and all of those life changing things that Steven has had to endure.  The aftermath of the physical and mental trauma that now haunt Steven cause and so much anxiety stress for him and in turn for me.  It’s such a shame.  We have time and a little spare change to do a few things, but a lot of times, I just can’t get him out the door.  The world is a scary place and when one feels weak and vulnerable, it’s even scarier.  And that’s the bottom line.  Home is safe DSC_0895and secure.  His needs are all met.  His food and beverage are all readily available whenever he wants without any fuss or bother or wait.  If he’s tired he has multiple areas to rest his weary bones.  If he’s feeling anxious, he can take a pill and chill out in a cozy familiar place, or he can go socialize in the big bold world that is right outside our community where home is a blink away if his mood changes and he needs to get back.  Therein lies the distinction between vacation and home.  Vacation is just too far away.

IMG_1846So my job, for now, is to make every day at home like a vacation.  Well, hell…for me it already is.  I don’t have to go to work every day.  I get to see Lil’ G A LOT!  I”m finally spending quality time with Steven in person instead of texting and calling all day from an office or car.  I feel like I’ve won the lottery.  Steven’s life is a vacation, too.  He just doesn’t know it.  He no longer has chores to do in the garden or garage or attic or anywhere that involves tools or safety glasses or power tools.  His daily responsibilities are so minimal that he actually puts in MORE effort when we stay in a hotel.  But he doesn’t see that.  So periodically he decides he needs a vacation and I guess all I have to do to make him happy is to just say, “Yes” to all his vacation plans.  Let him enjoy the planning that he loves so much and just know that we’re not going to go.  Reserve away big guy!  From now on, I say, “Yes!” to going no where!

 

 

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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!

 

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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Big Decisions – Hard Decisions

IMG_0958I don’t even feel bad anymore for missing work.  I was up and drinking coffee Thursday morning just looking at him sleeping.  His skin had taken on a grayish hue which isn’t as distinguished as the gray in his hair.  Actually, the hair is a hot mess because he hasn’t had the strength to let me take him to his barber to have it shaved off.  I can see where it’s thinning already from lying around all day.  His current style is all Cosmo Kramer, only without the witty repartee!  I was just about to hit the shower when he woke up.  I told him I thought I’d go to work at the design center, and he assured me that he’d be ‘fine’.  But, he hadn’t convinced me and I couldn’t stop thinking about the day before.  He couldn’t have possibly gone from totally helpless to “fine” over night.  So I asked him if he was just saying that I should go so I wouldn’t feel guilty.  “Yeah, kinda” was the answer I got.

So we always have to play this ‘what if’ game.  What if I didn’t go to work th-2and was here all day.  Would you feel better or worse.  “Better”…so there you are. I didn’t even have to take the game to round 2.  I decided to just stand guard from now until Monday when we go to Gainesville to meet with the Bone Marrow Transplant Team.  We already lost 2 more weeks because of Steven’s last hospital stay.  He’s scheduled to go back into the hospital next Tuesday for the second 4 day round of 24 hour a day chemo.  I don’t anticipate him feeling better suited for a 3 hour drive right after that.  He’s already pretty low, I can’t imagine what I’ll be getting back when the release him next time.  I swear to God, it’s like watching a human science experiment!  But I do know that if anything happens to him when he’s home alone, I’ll never forgive myself.

IMG_0960I’m getting pretty nurse-y.  I did the sponge bath thing while he was in bed.  He’s blacked out and fallen in the bathroom so many times that he’s just afraid of the shower at this point.  I moved him around so I could change the sheets, and in the last 2 days I’ve taken charge of his medications so I know he’s taking all the right things at all the right times.

Luckily my team in the design center is covering my work load like champs.  I can’t be more grateful that I don’t have to worry about anything there.  I get an occasional phone call for back up verification on unclear issues, but for the most part I’m left to concentrate on Steven.

I was planning on staying out of the office on Friday anyway.  I didn’t have any clients scheduled and Steven had a blood test on his calendar.  I didn’t want another dog escape or doggie medication ransack so I just decided it would be best to do this myself.  (See It’s Going to Be Alright)  Everything was buttoned up at home and I whisked Steven off in his magic wheelchair to drain off a few vials of blood.IMG_0963

I hadn’t counted on passing Dr. Sprawls in the hall on the way to the test.  He took one look at Steven and banished us to the hospital…I don’t know if it was the weakly posture in the chair, the pained look on Steven’s face or the baseball hat and sunglasses with the skin tone that made him look like a stand-in for Weekend at Bernie’s.  Whatever it was, we were back in our old stomping grounds of the ER at Wuestoff Hospital within 30 minutes.

IMG_0965Apparently Steven picked up some kind of cootie somewhere.   He’d been to the oncology office on Monday and Tuesday and who knows what kind of germ might have been exhaled in the waiting room from one of the caregivers killing time while their ward was getting pumped up with chemo juice.  Or he could have just touched something contaminated.  My biggest fear, though is that he got something from a dog lick.  The nurse in the ER assured us that mouths of dogs are cleaner than human mouths.  I don’t really doubt that, however I hadn’t mentioned the doggie part of my last post to her ( A Couple Of Firsts for Me Today! )  No matter how clean a dog kiss may or may not be, I don’t think that goes for a dog mouth that had a dead rat in it!  The tests came back and Steven had bacteria in his blood.  The doctor always uses special terms for me and what I asked him what that meant he said Steven had shit in his blood.  Real shit?  He never seriously answered that, however we live with butt lickers, so it’s not out of the question!

We left our house at 10:30 and it was now 4:30 PM.  We were still in the ER IMG_0964and a room was imminent, but I knew it would still be way past dark when I arrived home.  So I called my sister agin to run over to my house and turn on some lights for the dogs.  Between that little issue and the dog excitement of the last week, the conversation just happened between Steven and me…we need to find new homes for the dogs.  I’ve been thinking about it on and off for the past couple of months.  My plate it full enough with a job that adds an additional 3 hours to each day in my commute, Steven’s inability to care for himself and the household chores that pile up naturally.  The dogs have been really putting me over the edge.  And the antics of the week have completely defeated me.  We agreed not to make any permanent decisions until he was off the pain killers.  And then I got a text from my sister.  The dogs were fine, she put on some lights…but she found a pill bottle cap and 5 hexagonal shaped pink pills in the staging area.  WTF?  I cleaned the place like an OCD candidate.  Where did they get pills?  I never did check the back yard the day of the pill incident…but who would be looking for medication in the outdoor foliage?

IMG_3450Before I changed my mind, I contacted the breeder from whom we adopted Lucy.  I texted her the very short version of our sitch, and she has already texted back that she would be happy to take Lucy.  I haven’t been able to speak with her yet, because we’ve both been pretty tied up thus far.  But I’m hoping that by this afternoon we’ll have the most active of the bunch off to a home who can match her zest for life.  Killing me.  Can’t even write about it yet.  Can’t talk about it without tears, but I know it’s the right thing to do.  She is the worst and repeat offender.  She can’t help it.  She’s only 6 months old and has been spending her days with a sick man who can’t give her the human direction on expected behavior.  She’s so smart and so loving that it’s just not fair to her.  Crying again…sorry…BRB!

With any luck, this wonderful woman will take them all to find new homes. DOGS IN BED I just don’t have the time or the strength to do it myself.  I cry whenever I think about it.  But I know it’s right.  When Janet found the pill bottle cap with 5 tablets…I swear it was a sign from God.  And then at 3 am last night I was awakened by a crunching noise.  Lucy got out of bed, took herself outside to pee and then came back in, took my cheater glasses off my night table and was snacking on them.  The third pair this month that she’s destroyed.  Thank you God.  Her warm cuddly body as I was falling asleep was making me weak and had me reconsidering our decision!  Pills & glasses!  What the hell is next?  When I get home from the hospital today, I’m expecting a doggie party going on with the Animal Planet station blaring on the TV and everyone getting doggie fart drunk on Milk Bones and Rawhide!

2013-01-22 17.47.48So I’m here with Steven, waiting for the doctor to make rounds, watching him sleep and worrying about what is going on at home right now with no human supervision. I had really hoped that a puppy would bring new life to my oldest dog.  I had no idea she would bring a whole new idea catalog of “bad dog” hijinks that both of the older ones had grown out of and forgotten.  It seems like I have 3 puppies instead of 1.  And they are no longer a pack…they are a gang.

It’s really no wonder I drink!

 

 

If you want to help me take more time away from work and home caring for Tumor Boy and the Whippet widgetwidgetCircus, 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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