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!



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


    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!”


    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!




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!




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 3

IMG_1099We’re tired today, but we’re still trying to hold on to the good humor and positive attitude that we brought from home.  The outcome of our first day of stem cell collection would probably have been easier to take if it hadn’t been for that overachiever, Mrs. Johnson.  Steven put out 750,000 CD 34 cells (and don’t you wonder who has the patience for the job of counting all those little suckers).  The goal is 4 million.  Two million is that absolute minimum to do the transplant, but the doctors like to have 4…I guess that accounts for spillage?  Leftovers?  Whatever.  It was fine for us until Mrs. Johnson told us her day 1 was also her day done because her little baggie ended up with 11 million CD 34s.  Bitch!

The low count for us is nothing we could control.  The amount collected is in direct IMG_1098proportion to the amount of chemotherapy and / or radiation that each patient has received.  As we all know, Steven’s had so much chemo that his pee glows in the dark, so this was not a surprise to the medical professionals.  Unfortunately, we always expect a miracle, so when that miracle doesn’t happen, sometimes we are a little disappointed.  On the other hand, we have had a LOT of miracles during this adventure, and it was probably just Mrs. Johnson’s turn, so we really are happy for her.   Yet, I have to end the paragraph with “bitch.”

IMG_1097The next step was adding another ingredient to the mix.  Steven has been getting Neupogen injections twice a day since we arrived in Gainesville.  The first given at 8 AM-ish.  Since the collection started, he gets the shot a little later, after he’s all hooked up on the machine and it’s running which usually ends up in the 9:15 range.  And then we’d been coming back to Shands at 6 PM for the second injection.  But in order to encourage more of those CD 34 cells to sneak out of the bone marrow and party in the blood stream, making them easier to collect, another injection was going to be introduced.  However, that injection must be administered 11 hours prior to collection,IMG_1100 meaning we needed to make our second trip to the hospital at 10 PM for the plerixafor and Nuepogen cocktail.  That’s a great way to keep from relaxing at the end of the day!  You don’t want to fall asleep and miss the appointment time, but you don’t have the energy to go out dancing until 10.

Monday night wasn’t too bad.  We thought it was a one time thing, so we just considered it a really short date, although the planning was a PIA.  Hope Lodge has a 9 PM curfew.  After that, the alarm is set and the doors are locked so if you want out, you have to make arrangements with the night manager to let you out and then back in.  It’s not a huge deal, and our night manager Diane couldn’t have been nicer about it, but it’s just one more little detail to manage.  Regardless of the hurdles, the shot IMG_1101helped and Steven yielded another 900,000 cells which puts us in the 1.6 million ball park. We were getting closer, but we knew we were in for another late night date on Tuesday.

At this time, I suggest to hit the link to see the side effects of plerixafor.  Allegedly that is the generic name for Mozobil.  My generic name for this nightmare is Colon Blow.  Because if the first dose doesn’t act as a total cleanse, the second definitely will.  As if we weren’t tired enough, we didn’t get much rest last night.  If I wasn’t so tired myself today, I’d probably be feeling bad for Steven.  Unfortunately, I’m downright exhausted.  I’m not sure why.  The collection takes about 5 hours and I just sit here with him while the machine does all the work.  It’s not like I’m running a marathon.  And with my knee still giving me problems, I’m not getting a lot of aerobics in back at the Lodge either.  But for the past few days, I always feel like I could fall asleep if I just sit quietly for too long.

So we’re hoping for a miracle again today.  I don’t know if it’s possible for Steven to shoot out at least 2 million CD 34s today, but if the good Lord has it on his agenda, I would be extremely grateful.

widgetWe could sure use your help.  I’ve been taking a LOT of unpaid time off and Steven just won’t get that paper route I’ve been suggesting.  As I continue my entertaining writing projects about our adventures with Cancer, we’d be so very grateful if you’d visit our Go Fund Me Page. Our insurance has a lot of loopholes for things that aren’t covered, and my job has no loopholes for being able to work from home! And I’m gonna do whatever I have to do to keep my husband around. After all, I just got him house broken!



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.





Living the Dream

IMG_6359So…I’ve been a little busy.  To anyone who thought I bit off WAY more than I would be able to chew when I picked up an eight week old puppy the week before Steven started Chemo…You were right.  It was a little crazy the first week back to work.  But now that Lucy has settled in, is housebroken and has bonded with Maritza and Zoey, I’m laughing right back atcha because she is an awesome addition to our family!  It’s like having mood lifter, side show and cuddle bug all in one!  If you gotta have cancer, this little furry ball of doggie kisses has made it suck just a little less for Steven!

Steven has been handling this all like a real trouper.  He impresses me IMG_0759every day with his resolve.  It astounds me that a cold turns him into the biggest, whiny, pain-in-the-ass baby on the planet.  But chemo he handles like a champ.

I have to admit that we both went into this with real Pollyanna attitudes towards the new chemo drug combo.  We try to keep up on new treatments, so the Bendamustine / Rituxan treatment was not news to us.  And everything says the side effects of this compared with CHOP+R would be minimal.  But…and there is always a “but”…the studies are talking about the long term side effects AFTER completion of treatment.  Even though we are smart people with realistic expectations, we were hanging on to the dream that we’d tip-toe though the tulips of treatment with ease.  A The only tip-toeing for Steven for the first 10 days was the short hop from bed to the designated barfing zone.

IMG_0747To recap the progression of after effects of the chemo would be nausea, massive headache, nausea, body aches, nausea, constipation and nausea.  Needless to say, our bubble burst pretty quickly once we realized how miserable he was going to be. And now for the good news…there are some not so bad days.  After the first week, there were short periods of times when he felt just “OK”.  He has been able to drive himself to a couple of doctor’s appointments and even though the short trip wears him out, he’s not totally incapacitated.  He’s had days where he can eat regular food, and I’ve stocked the fridge with all the new things that seem appealing to him.  They are not at all what he would normally ask for, but as long as it’s healthy, I don’t care if he eats tapioca pudding 12 times a day!  It’s made with milk and sugar.  The milk is a protein and the sugar will hopefully keep him from losing more weight.  He’s down 34 lbs. so far.

And the best news is that his appointment with Dr. Sprawls yesterday was uplifting.  SELFIE KISSINGThis chemo regimen only requires 4 rounds (we were expecting 6), and there are 4 weeks between treatments (rather than 3) so he has more time to recover.  And, his lymph nodes aren’t swollen anymore, he’s breathing like a normal person and we are feeling VERY excited about the possible results.  According to the doctor and the studies, this particular protocol has had amazing results in keeping the cancer at bay for around 10 years post completion.  So maybe we were dreaming going into this thinking this Chemo would be easy.  But this chemo has given us good reason to dream that we’ll get to the other side and have a Lymphoma-free home for the next ten years.  Because that’s a dream that could be a reality!

Cancer Treatment Week 1 – Let The Games Begin!

Sept. Lymphoma Awareness monthThere have been so many thoughts swirling around in my head this week that I’ve had a hard time coming up with a blog entry.  I can’t seem to focus on any one thing so today is a conglomeration of the beginning of our trip through chemo.  And it is a trip.  This road show will be bouncing around the county from now until we’re done.  

SIDEBAR: Another little piece of INFORMATION FOR CANCER NEWBIES:  This is a travel team.  There are numerous doctor appointments, lab tests, pharmacy runs and miscellany that come up every week.  Plan to put some mileage on the family transport!

To recap last week, Steven had a doctor’s visit with our family doctor on Monday.  Ironically, that had nothing to do with the Lymphoma.  It was a rescheduled visit to complete his yearly “wellness” exam for my company’s insurance program.  The irony comes with all the standard test results.  Steven’s blood pressure is great and on the low side.  His cholesterol is is perfect, pulse perfect, and the only obvious deficiency in his blood tests showed that he’s low on Vitamin D2 and needs to take a supplement.  He’s in perfect shape…except for the CANCER!  How does that even happen?  

Tuesday was an extended visit with Dr. Sprawls who reported that the biopsies showed that Steven’s flavor of Lymphoma was still the Follicular variety, it just changed from slow growing to fast growing.  There’s more to it than that, but we have followed the studies on all this enough to know that this is better than what it could be and the treatments have been WAY improved than the way it was 10 years ago.  Steven’s original chemo cocktail was CHOPs + Rituxan, which kills the cancer and everything else in it’s path.  It’s the Clorox bleach of chemotherapy and it’s after effects are similar.  It breaks down everything and washes it away.  Unfortunately in addition to the cancer cells, it includes nerve endings, memory cells, hair follicles, taste buds, muscle memory and a plethora of other bodily functions that are really necessary for everyday life.  So the doc’s game plan for Rituxan + Bendamustine was a relief.  This cocktail is more like Shout than Clorox.  It gets the stain out without whitewashing the surrounding material.  

IMG_0727Dr. Sprawls wanted to get Steven started right away, but that insurance thing always factors into to every time line.  The doc would have sent Steven to the Chemo room right away if he didn’t need pre-approval from the insurance ogres.  So instead, we were going to wait a day to get the Blue Cross ducks in a row and Chemo was scheduled to begin on Thursday…and Friday.  That was a little different.  But it brings us back to Rules for Newbies in the last post.  Just because the specialist says it’s going to go fast, do the healthcare math and add the extra hours…or days.  Steven was in treatment for 4-1/2 hours on Thursday and 6 hours on Friday.  

He feels like crap today, but he’s been feeling that way for weeks so I can’t really IMG_0719blame the Chemo.  In a few minutes we’re heading up to the one Space Coast Cancer Center that is open on weekends.  Steven needs a shot of Neulasta to counter balance the chemo drugs.  And the time frame for the injection is very specific so it looks like a Sunday family outing for us!

(Neulasta® (pegfilgrastim) is a prescription medication used to reduce the risk of infection (initially marked by fever) in patients with some tumors receiving strong chemotherapy that decreases the number of infection-fighting white blood cells.)

So that’s our first week.  We made it through round 1.  Nobody puked, nobody cried, nobody lost any hair.  This was a good week!