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?

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HAPPY F*&@ING HOLIDAYS

I really screwed up!  I’ve been so busy that I haven’t posted anything about the treatment that has ruled our lives for the past 4 months.  I promised you and myself that I would journal through this experience…and I didn’t.  I suck!  Unfortunately  I’m OK with sucking!  But I do wish I had taken you through the adventure with us.  Because it really has been really trying, both physically and mentally.  And there was stuff to be learned.

Steven - man in the mirror

STEVEN IN REAL LIFE

Steven has had 4 pretty drastic treatments.  It was easier than the CHOPs + R back in 2004, but it was still no walk in the park.  The Neulasta shots were the worst.  They made him pukey-yucky tummy sick and  headachey a la migraine.  It’s a very rare side effect to be light headed with low blood pressure to the point of passing out, or  it could have been from the cancer or chemo and not the Neulasta  but whatever caused it…it was hell.  (BEE TEE DUBS – even though he’s lost a lot of weight…I still can’t hold him up when he’s dead weight.  As a care giver, it really is a black mark on your score card when you drop the patient on his ass!.) And unfortunately the Neulasta didn’t really boost his white blood cell count enough to make the side effects seemingly worth it.

The chemo crapped out Steven’s stamina, strength and energy making him as sturdy as  a 90 year old on roller skates.  In other words, we’ll never auditions for a gig on a Neulasta commercial!  In retrospect, I should have had him use Tampax.  Then he could have been playing tennis and riding horses!

So today was the culmination of the last 4 months.  Yesterday was the second PET scan Steven has had since starting chemo.  The first scan was after the second treatment and he showed remarkable lessening of the cancer.  All his lymph nodes had shrunk and the drugs were working.  So we knew that going into today’s visit that the cancer would be gone.  The only thing that didn’t fit into the puzzle was that the dogs have been licking his pillows again!  (See my post on HEAD GRAVY )  But WTF…they’re dogs!

Hemmingway

STEVEN’S IDEA OF HIMSELF

Dr. Sprawls started reading the blood test results first making a weird “hmmm” noise a couple of times.  We were waiting for the PET scan results and on cue his printer fired up and the pages shot out.  He cut straight to the end to read the summary aloud, because he really likes the drama.  And he read, “…the lymph nodes have increased in size since the last scan……”  and then there was silence.  I don’t know who was more shocked, him or us.  The doctor and I both did the same thing.  We checked the name on the report…we both figured this was from another patient.  But it wasn’t.  It was Steven.  And the chemo isn’t working the way it  should any more.  So we need a new plan, but no one knows what it is.  And then Dr. Sprawls & I both did the stupidest thing.  We looked to Steven to be the rock.  And he was.  He was reassuring the doctor that it would work out and we’d figure it out.  He held my hand as the tears started running down my cheeks and just lightly squeezed.  He was so calm and relaxed that I didn’t really fall apart.  I just shed a few tears and let him drive home.

Steven hasn’t really been following the new protocols because he’s been busy trying to get through this one.  I haven’t been paying attention to anything except trying to hold everything at home and at work together.  And the doctor admitted that he just always assumes that Steven is going to come out on top, so he never considered that his wouldn’t work…so we re-group.  Dr. Sprawls is gathering his posse and going through is card catalog of science.  He promised to call Steven on Sunday night with his findings.

Meanwhile, I feel bad that I’m not calling all our friends and family to break the news.  But I just don’t want to talk about it right now.  I’m not ready, and you gotta know by now that if I can’t talk, I’m really befuddled!  So we’re going to try to sail through the holidays with a good attitude.  And in the meantime, I’ll try to be more diligent about blogging.  Every time I break that promise it works out bad.  I think its time to learn that I’m supposed to be sharing all the good and bad as we tip-toe through the cancer dance!

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