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!

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It’s Starting Before It’s Started

I remember how Steven was during chemo the first time, but I must have forgotten how he was BEFORE that first chemo.  I do remember that we found out during tests that took place in the hospital, so he had to be pretty sick if he was in the hospital.  Probably as sick as he is now.  I just don’t remember it clearly.  As I watch him suffer here at home, it’s KILLING me that I can’t do anything.  On the other hand, I’m glad he’s waiting it out in the comfort of our home, rather than having his days pass uncomfortably in a bed that crunches when you move!

Steven after knife fightWe go to see Dr. Sprawls on Tuesday and he’ll have the results of the biopsies from last week.  The biopsies alone are good reason to feel like crap!  He looks like he was in a knife fight in a biker bar.  He has stab marks from a scalpel in several places on his neck and chest and a surgically implanted port in his chest. Count your blessing that I don’t have a pic of the incision in his arm pit.  It looks like a monkey’s lady parts.  (Don’t ask how I know…I just do, OK?)

Unfortunately, this cancer thing is really powerful stuff.  I’ve watched it take down my tough guy in just a few weeks.  He is now laying in bed, struggling to catch his breath.  I would be willing to bet that some of the fluid that was drained from his abdomen last Monday is back.  And the lesser amount that was not drained has probably increased.  His belly is huge again and unless he’s about to deliver a pack of Gosselin’s, it’s our old archenemy Lymphoma trying to get in a couple of sucker punches before the chemo bell rings.  He’s  in a lot of pain that doesn’t seem to be managed by the hydocodone that’s been prescribed. So here I sit, watching him sleep and wishing I could fix it.  I do know that caregivers sometimes think a sick person is safer in the hospital where there are drugs, and oxygen tanks and specialists.  But the waiting game is worse in the big house…that I know from experience.

So with that in mind, I thought I’d share a few more words of wisdom for cancer newbies.  These particular tidbits cross over to ANY situation that involves a hospital.  Three key things to remember are:

  1. Any time frames in a hospital need to have 12-24 hours factored into them.  If your doctor says you’ll be out by noon, order dinner because you’ll be out some where between 6PM and the next day.  If the nurse says the hospital pharmacy is sending some new pain meds right up…bite on a bullet and add +2-4 hours.  And if you like your roommate and he’s making the time pass nicely for you while he recovers from something serious…expect a miracle because he’ll be leaving tomorrow at noon.
  2. No matter how sick you are and how frightened and helpless you feel, understand that sometime within the first day you will receive a visit from the Angel of Debt – the hospital payment Nazi.  She’ll show up with a clipboard and a sneer and will throw around giant numbers that will make you want to throw in the towel.  Don’t.  Don’t listen, don’t worry and don’t let her bully you.  Just realize that there are some serial killers who don’t have the stomach to kill…so they work in the payment offices of hospitals across the land.  The bills WILL wait for you.
  3. There is always ONE nurse Cratchit.  No matter how many caring, sweet, understanding nurses there are on your floor, that one devil-nurse will darken your door at least once.  She’ll hate you from the jump and you’ll hate her right back and it will be a long shift.  Just remember, it’s better to get drugs than be right.  And better than that – all shifts come to an end!

IMG_0695So for now, the only joyous moments Steven is having are the short minutes he can tolerIMG_0694ate sitting and watching our cute new puppy Lucy Mae.  I picked her up on Friday and she is the smallest, sweetest thing we’ve had here since Maritza was a Whippet baby.  The one upside to a puppy that I overlooked when factoring in this little addition to our family is that puppy=baby=napper.  So when Steven feel so exhausted that he can’t sit up…he’s got a willing partner to cuddle up for a snooze.

 

This Time We’re Gonna Make Cancer More Fun!

IMG_0672The last time that Steven had the Large B Cell Non-Hodgkins Lymphoma, which is what we think is rearing it’s ugly head again, it was 2004 and we were cancer newbies.  We were scared, uninformed and new to working the medical system, insurance racket and side effects game.  He wouldn’t let me take any photos to document his journey, and I was too busy trying to figure out how to juggle all the balls to have time to blog.  So this time, we…or maybe it was I…decided to document this crappy situation so when we look back on this, we can be grateful that we made it to the finish line again.  Because we will.  And during this marathon, we might be able to give a moral boost to other newbies.  So today Steven was checked into the hospital.  He looks a little apprehensive in the pic, but it was more the heavy breathing from the walk from the parking lot.  Stubborn…he wouldn’t let me drop him off at the entrance!

I remember last time, sitting in the hospital room for days worrying and uncomfortable as he got shuttled around the building for tests and more tests.  The person I got to spend time with was the old guy in the bed next to him who slept all day on his side, with his hospital gown gaping and his saggy bare ass singing me a gassy melody.  I will not be having any part of that noise this time.  I got Steven settled, sat around long enough to meet and talk with the surgeon who will be doing his biopsy and putting in his port, and then I booked out of there.  Surprisingly, I didn’t feel bad or guilty.  And Steven was fine with seeing me go.  He was glad to grab a little snooze after the effort of checking in, and we were jointly calm and at peace with the whole situationIMG_0678.

We had a two minute conversation about death yesterday.  I told him I didn’t want him to die, but if he thought he might I needed to know now…we’re getting a puppy in 5 days and I won’t move forward if he’s not going to be around.  He said he really wants the puppy…so he won’t die on me.  And there you have it.  Let the games begin.  Today was all about scans and X-rays and blood tests and busy work for him at the old cancer factory.  I went home to clean and puppy proof the house.  We talked a few times and texted a lot and the only ones who seem depressed are Mariza and Zoey.  And I’m not sure if they were depressed because Dad has cancer, or because he didn’t come home with me..or because we’re getting a puppy, but either way the next few months are still going to be more fun than the first time!

Tomorrow morning Dr. Sprawls will be in for rounds and will give Steven a better run down of the schedule he has planned.  I’m going to go to work, because it’s way too early in the game to be taking time off for caregiving.  So here’s the first suggestion for the newbie caregivers out there.  New mothers are always told that they should try to sleep when the baby sleeps.  It’s kind of the same for care givers.  When someone is taking care of your patient, take the time to do things that you want or need to do.  Sitting in a half empty hospital room staring at a stranger’s ass and wondering when it’s going to go off next is not in the care giver union hand book.  Give yourself a break!  Do your normal things.  Or, do something special that makes you feel good.  Just do something for you.  Get a pedicure, get some grocery shopping done…or get a puppy!

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My World, My Challenges

IMG_0184And so it goes.  I’ve been a big shot.  I’ve been busy, claiming myself to be too busy to blog.  And rightfully so.  I’m a designer in the big city of Orlando now and I crap dollar bills.  A big shot!  What do I need with a blog?  And Steven’s been a big shot, too.  He’s been unbelievably healthy.  He’s been managing real estate projects.  He’s been moving mountains (or more precisely Sea Grape Trees) in our yard.  Home improvement projects that we’ve been putting off for 17 years are either done or in the works.  He’s passed the last few years (5 to be exact) without any chemo treatments because his doctor has deemed him too healthy for chemo.  He’s Superman.  Together we are big shots…who just hit the wall.

A month ago I left for the grocery store and when I returned he had painted the family room.  He was a little tired, but really proud of his stamina.  And he’s overseen the remodel of our guest bath.  Walls had to be removed to find the leak that started IMG_0445our project.  And when we were down to the studs and the water was re-routed, Steven oversaw and was hands-on during the remodelng.  I was able to finally design something from scratch in my OWN house and he made sure it came out just the way I wanted it.  Most of it its done…almost.  The baseboards need to get installed in the guest bath.  That’s all that’s left.  Easy peasy, right?  Steven assured me that was a small enough job to do himself…but he hasn’t.  I’ve been getting impatient and suspicious all at the same.  Suddenly the man who cut a 1970s pink steel bath tub in half and dragged the pieces out of the house himself, couldn’t pick up a 6″ piece of moulding.  Then, he started taking those 4 hour naps.  And we tried to pretend he was just recovering from all the work he was doing while driving himself to finish, because damn it we were not going to let the other option rear it’s ugly head.

A week ago Steven started to look pregnant.  Not a good look for a 60 year old man, bee-tee-dubs.  I mean grand children would be cool, but not that way.  He can’t deal with a hemorrhoid.  How would he pass a watermelon through his pee hole? And the giant belly not only looked ghetto, it made it hard for him to catch his breath.  So he went to our family doctor.

Side bar please – For some reason, when it comes to those kinds of visits, he has so much information for the doc that he focuses on all the wrong things.  He actually told the doctor he could feel the bile in his abdomen.  Seriously?  He can’t feel when there’s so much gas in there that he’s gonna rip one that breaks the sound barrier…but he can feel bile?

Naturally, he got sent home after a myriad of blood draws, an EKG, some lung “blow in this tube” test and then got assigned a chest x-ray for homework.  I think the “bile” thing made him seem a little “Felix Unger-y”  But the tests – He aced them all, my little overachiever.  But last weekend he could barely get out of bed.  He looked gray in the face and could hardlly breath.  I told him to call our doctor, and he did with little response.

Side bar again.  I’d like to redirect your attention to the post of  June 1, 2011 our different styles of talking with doctors.  (You should click on the link and read it later.  It’s true and really funny)  Back to the present –  I usually get better results.  So I made Steven call again and told him what to say.  I went with him to the appointment and suddenly our family doc was on the phone with his cancer doc and his CAT scan was rescheduled from October to yesterday.  And then Dr. Sprawls called him personally and set him up with an appointment for today…because we are big shots.  Unfortunately in this situation a big shot is really a sick person, so whoo hoo for us!

And so it goes.  The slow growing follicular lymphoma which has been the “good” cancer we’ve been coddling for the last 10 years has decided to come to the party in costume as large B cell lymphoma.  For those of you in “the know,” that’s the cancer that really sucks and needs to be put in it’s place with the puking, hair falling out drugs.  Not for nuthin’ but this time I’m getting pictures of bald Steven.  He’s really quite handsome in a Marine Officer kind of way.  But for now, we’re taking it one day at a time.  For instance today…how many doctors do you know well enough that the’ll do this (see pix) rather than make the patient move into an uncomfortable position.  LOL he’s the best.  Dr. Sprawls had a smile on his face when we got there, and a smile on his face when he give us the

IMG_0667 IMG_0668orders for the hospital.  He’s setting Steven up with a biopsy to grab a few lymph nodes to  examine.  A bone biopsy to check that whole under the hood deal, an echo cardiogram to figure out why he’s breathing like a dog in heat and anything else that might help us get to the bottom of this mess.  The only down side is that he’s ordered a port to be put into Steven’s chest.  A surgeon does it and it’s like plumbing for easy drug input.  That’s not a little thing.  That means business.  But he was still smiling when we left.  Dr. Sprawls took on Steven as a patient 10 years ago because he said Steven would make him look good.  Every patient who survives is considered a “WIN” in the doctor’s column.  He’s looking for another “WIN” and so are we.

We’re going to make it.  That base board in the guest bath isn’t going to jump into place itself.