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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Too Many Thoughts for My Tired Old Brain

IMG_1236Have you missed me?  I’ve been wanting to add a new post for a while, but I just couldn’t get my brain to settle down enough to focus on a any particular idea and organize it.  So today might just very well end up as a smorgasbord of semi-connecting concepts.  But I’m going to share anyway, because I think this is a direct result of the past year (yes…surprisingly it’s been that long!) and I’m trying my best to keep it real!

  1. Steven is doing great.  That’s the most important topic of every day.  His last visit with Dr. Sprawls had the doctor in awe of the progress and the full experience of what’s gone on.  He can’t believe that Steven was taken right to the very edge of death only to come back as the new-new and improved Steven 3.0 (For a little more history, read A Thank You to Cancer For Steven 2.0 from February 2011)  Steven knew the doctor
    SISTER MARY STEVEN...LOL!  HIS HEAD IS ALWAYS COLD!

    SISTER MARY STEVEN…LOL! HIS HEAD IS ALWAYS COLD!

    was more amazed than we are because he kept repeating, “You know they gave you LETHAL doses of chemo, right?”  The answer to that, by the way. is YES!!!!  We know…even though we tried not to think about it at the time, the days after the transplant, Day +7 through Day +20 to be exact, were fucked up!!!!  For poor Steven, I’m pretty sure his main thoughts during that span were that he knew he COULD die, was pretty sure he WOULDN”T die but absolutely felt like he HAD died and gone to HELL!  And now we’re through it and it’s changed life for both of us in the most extreme way…and I can’t even put it in to words yet.  The only thing I’ve got right now is “Fucking Unbelievable” and I don’t think that’s really an article for Yahoo Health!

  2. Facebook has this new annoying addition of grabbing a throw back photo from IMG_0577a past post and popping it into your news feed just to screw with your brain.  I’ve been in a tailspin since July 27 when I had a photo thrown in my face of Maritza and Zoey in the backseat of the car with the caption, “Maritza and Zoey want a dog…going to try on a few!”  It made me so sad that we picked out a new puppy, waited anxiously for her to be old enough to come home to us, got her home just to find out that Steven’s chemo hadn’t worked.  After a lot of sickness and hospital stays mixed in with puppy training and being outnumbered by high energy canines, we ultimately had to find new homes for all three girls in 1 year.  And then added the transplant process on top of that.  Seriously, God…WTF?  YouPREGNANT PEDICURES might me giving me too much credit for strength!
  3. The news that Alexis was growing us a grand baby was the turning point in grabbing on to a life line.  We found out right before the transplant and it was the ray of light that we turned on when things were the bleakest.  Sadly, I went way overboard on my prediction that I was getting a granddaughter.  Thank you God for making me leave the bag I brought from home in the car.  It held a few items of hand-made heirloom girl clothes that were made by me and my mom when Alexis was a sprout.  I can’t decide how crazy it is that I would hang on to that stuff or how embarrassing that it would have been to present a pile of couture cross-dressing styles to her in front of her friends.  Either way, I just wish I could have gotten my face to keep smiling without my eye twitching and FEED MEmy mouth tensing up in a grin resembling The Joker!  Unfortunately, I’ve gotten the rep of being a big mouth who can’t keep a secret, so I found out the news with the rest of the general public and just wasn’t prepared to be wrong. A little pre-party notice would have been nice!  Surprisingly, you’d think by now that Alexis would know that I always feel like I should get preferential treatment.  But she’ll understand in 4 short months when she tries to push a Perdue Oven Stuffer Roaster out her lady parts.  Next time she’ll know why I feel that I ain’t just the one of the masses!  And, boys are good too and I’m still excited to have a baby in the family.  And I’m not asking again what they are going to name him.  I needed a quick fix to get used to the boy thing, so I decided that I’m calling him Chachi!
  4. I’ve been limping around longer that I can remember walking right.  I’m pretty SWOLLEN KNEEsure I haven’t worn heels in over a year.  This is the first time in my life where I’ve got a closet full of flat shoes, and I really don’t like it.  Seriously, when we first went up to Gainesville for Steven’s evaluation, I actually needed to use his walker to get get around the huge facility.  In between evaluation and collection, I went to a orthopedist who took x-rays and determined a bunch of minor problems.  An MRI was really in order, but I just didn’t have the time with Steven’s full treatment schedule, so I got a shot of cortisone and limped away.  It helped, but not enough to get me on my own feet without walking like Granpappy Amos.  I hated the fact that Steven could move faster than me, so in between collection and transplant, I stopped in for a second shot of cortisone while we were home.  I was told that and MRI was mandatory if the pain continued and it did.  So I did.  When we finally returned for good I squeezed in an MRI before returning to work.  It seems I’ve been hobbling around with a torn meniscus, a huge Bakers cyst on the back of my knee and a bulb shaped swelling of bursitis on the front of my knee.  gallagher_audienceWhen I shave my legs it’s like a trip through the Rockies!  So I’ve got a date set for August 14 for arthroscopic surgery that’s supposed to be a snap.  I don’t see how that can be.  I think the doc is going to drill the first hole in my knee and get hit in the face with a geyser of fluid tantamount to Old Faithful before he even reaches my meniscus.  I’m no doctor but if I can see the fluid from the outside, I can’t figure out how he’s going to get around it without it being like a first row seat to see Gallagher!  Either way, I’ve already got a prescription for pain pills for afterwords and I’m going to insist on a little sumpin-sumpin to calm my nerves upon arrival.  Not for nuthin’ but my pits are sweating already.
  5. And finally, it’s the usual quarterly scare of “I could get laid off at any minute” going on at work.  I’ve never had a job that was so tumultuous and I was a stand up comic for 8 years!  I just work for a builder who loves to chain yank and my bosses either don’t pay attention enough, don’t worry that they still haven’t found anything definite to fill the gap if we do lose the account or, and this is my opinion, don’t give a rat’s ass about me.  After all, I got laid off once 3 years ago kinda in the same way.  And since I believe the rule of thumb is, and I paraphrase, “Screw me once, shame on you…screw me twice, shame on me!”
    YOU WANT FRIES WITH THAT?

    YOU WANT FRIES WITH THAT?

    So that’s another thought for my tired old brain.

For the most part I don’t let it bother me too much.  However, this weekend was the blue moon, so I did spend a good part of Saturday howling at whatever, retaining water and bloating like water balloon and feeling a little sorry for myself.  But today is Sunday, I’m trying to shake off the bad vibes and focus on all the great stuff going on.  So here’s the short list:

  1. Steven isn’t dead and is cancer free.
  2. I don’t have to pick up poop in the back yard.
  3. Granny loves Chachi
  4. Free knee surgery since our out of pocket maximum has been met
  5. FMLA says I can’t get fired, so I wonder what will happen next??? STAY TUNED!  SAME BAT TIME…SAME BAT CHANNEL!

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widgetTHIS IS IT! WE CAN SEE THE HOME STRETCH! Unfortunately, we don’t know when Steven will be able to be 100% self sufficient to be left to his own devices. Until that happens, I’ll be taking assorted days off from work AGAIN…We’d appreciate any help you can give us!  PLEASE VISIT OUR “GO FUND ME” PAGE

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.

IMG_1091

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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Here We Go!

Cancer Hospital exterior Today was the day!  Steven finally scored the appointment we have been awaiting.  It’s too bad it had to be at 8 AM, but we were not going to miss it no matter what.  So our alarm went off at the butt crack of dawn, which is a very dark time.  We managed to get out of the house by 4:45 AM so we could drive the 179 miles to Gainesville, FL to meet with Dr. Lynch.

It was an eerily easy trip.  There wasn’t much traffic but there was enough fog to make most of the drive seem like driving into a dream.  We listened to talk radio until the station I prefer started to get that static-y sound that starts when you’re going out of range.  And then we drove in silence.  Not in a bad way, just in a way that is really odd for us.  And then we were there…on time.

It looked the same as it did the last time we saw Dr. Lynch, 10 years ago.  It was all coming back to me, only this time I was noticing other things.  I noticed that I should put Steven’s handicap placard in my car so I can park closer next time I bring him.  I noticed that last time I didn’t think there would be a “next time.”  Whereas this time I hope there are a LOT of “next times.”  And I noticed that as we walked into the building, last time we were nervous, too.

The doctor was the same as I remember too.  He’s got a great way about him that makes you feel like IMG_0914you’ve known him for years.  And, when he talks, you listen – like Smith Barney.  (Sorry kids, I’m not updating my references for you.  Google John Houseman).  It didn’t dawn on me until today that Shands is a teaching hospital and Dr. Lynch also teaches at University of Florida.  I should have picked that up 10 years ago when I first noticed the Gator necktie.  Nevertheless, I realized that he makes everything so clear because he’s used to teaching.  It’s not Cancer for Dummies by any means, but what he says is abundantly clear, even with the medical terms.  So whether you are a patient or a student, you’ll get the picture.

The only downside to Dr. Lynch is that he tells you everything…even the crap you don’t want to hear!  So he touched on the possibility that this whole mess could end badly.   He did present it in a compassionate and honest way.  He waited for us to acknowledge that we understood and then he quickly moved on to the other options that could end great.  We’re picking on of those, by the way, because I won’t even think of any other option.  It’s not like I don’t know the reality of our situation, because I certainly do!  I just don’t like facing bad outcomes before I have to.

voices in my head signThroughout my life I’ve been aware of all the bad outcomes that could happen to me or the people I love.  But if I don’t need to face it today,  I neatly file that shit, using the Dewey Decimal System,  in a card catalog in the back of my brain.  I always know where it is and can grab a card and glance at it when I have to…and then put it right back where it belongs…out of sight.  Because I’ve learned that most of the crap that’s gone wrong around me wasn’t even in the card catalog.  And most of what’s in the card catalog has never happened.  And the few bad outcomes that I saw coming were going to happen whether or not I made myself crazy dwelling in the dark when I should be sleeping! So to be kinda Zen about it, we’ve just decided to be in the moment.  OMMMMMMMMM…

My Water Garden / Meditation Spot

My Water Garden / Meditation Spot

So, we move forward with some nasty-ass chemotherapy that’s going to make my handsome husband a skinny, bald, pasty guy for a while.  In the best case scenario, that will kill all the cancer that didn’t take off for the holidays and kept growing while the world drank egg nog.  And then we’ll do whatever we have to do next to make the bad stuff in his body start acting right by a pseudo in vitro bone marrow transplant that might be his own cleaned up bone marrow, or marrow from some donor.  I don’t even want to go there yet.  That next step is yet to be determined but I’m counting on the doctors to be The Cancer Whisperers, and I’m counting on them to make cancer to lay down and play dead.  And I’m counting on a really good outcome, where I get jewelry again at the end of it.

AND I’M COUNTING ON YOUR PRAYERS!

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The Man Who Has Everything

IMG_0879Well, Christmas is almost here and I still don’t have a gift for Steven nailed down. What do you get for the man who has everything?

When Steven really wants something he usually gets it. I don’t mean that in a real spoiled-y husband kind of way! It’s just that his wants are so few, that when there is something special that he has his eye on, one of us usually makes it happen – thus making it very hard for me when a special occasion arises like a birthday, an anniversary or Christmas, to hit a homerun as wife of the year in the gift department.

So this year I thought I was really going to kill it! What do you get for the man who has everything including…lymphoma? You get him a bone marrow transplant! I know that might not seem like something really dandy to most people but trust me, when you need one it’s the gift that keeps on giving! The bad thing is a bone marrow transplant is just like the latest and greatest toy. It’s really hard to get around the holidays.

All this past week, Dr. Sprawls’ staff has been trying to get Steven an appointment with the renowned Dr. Lynch at Shands medical center in Gainesville. They still haven’t been able to make it happen because of the end of year festivities that everyone else is enjoying. Add to that the little wrinkle that all Americans who work for a living know. “Use it or lose” it on vacation days is the status quo. In medical offices throughout the land, no one is sitting in their usual chair. The ins and outs of running an office have become a mumbo-jumbo of people trying to fake their way through the day in order to cover all the vacationing spots!

Getting the appointment is only the beginning of my woe. I really hate to be thinking of a bone marrow transplant as the Cabbage Patch doll of my current life, but it looks like that’s what it’s become. Not only am I having trouble getting one before Christmas, but I’m gonna pay through the nose for this little baby whenever it passes by. We met our “out of pocket” insurance for this year, but if this transplant nonsense starts at the beginning of 2015, I am screwed. The insurance game makes overnight shipping charges seem like gum ball money!

So for the holiday season we’ll be sitting by the phone awaiting the next phase of treatment…and probably scrounging the sofa for spare change. But no matter what comes next, we’re both glad I didn’t settle on getting him a tie.

Bee Tee Dubs. This post comes to you from the keypad of my iPhone 6. How current am I?