Why Haven’t I Popped My Spring?

IMG_0803I think I’d like to play the part of the cranky, snippy, sarcastic Alexandra for today’s post, please.  Consider yourself formally warned, so read at your own risk!

Lots has happened since our trip to Gainesville!  Steven got accepted into the Bone Marrow Transplant program.  Even though we knew that the evaluation was for the purpose of getting into the program, it never dawned on me that he might get passed up.  It started to play out when we got back and Dr. Sprawls was SO happy to hear that Steven was accepted.  Well what the hell did he expect?  That we’d drive up to Shands just for shits and giggles, talk to a few more white coats and then call it a day?  That’s when it dawned on me that there were weeks of worrying that I missed because I just didn’t know that there was the possibility of NOT getting into the UF Cancer Fraternity.  Right there I learned a little something that I kind of already know concerning worry and plans and the future.  But, like a stubborn mule, it’s the constant reinforcement that makes me learn.  I guess this was one of those “teachable moments” that have become all the rage with the younger generations.  Oooh!  Lucky me!  I’m on trend!

We’ve been doing cancer for years.  It’s been pretty routine.  Not that either one of ever wanted this  to be Rituxanpart of our routine, but Steven and I are both pretty committed to not being dead.  But even with the excitement and glamour of life with tumor boy, this is the first time that the original plans for treatment are so far off course that I’m coming to realize there is no longer a real plan.  We’re just heading in the direction of being well.  We have a rough outline of how that’s going to happen, but the clockwork appointments that have ruled our lives for the past 10 years are nowhere to be found.  Nothing is going according to any schedule!  And that is the new schedule!

Steven was supposed to go in for his second, and hopefully last hospitalized chemo treatment, right after we returned from Gainesville.  However, the doctor’s office called to schedule labs and an office visit with Dr. Sprawls during the time we expected to have Steven in the hospital.  WTF? We were confused, but figured the doc’s office knew what was going on, so Steven went for his labs.  That afternoon, the hospital called asking where he was…they were expecting him.  Needless to say, that threw a little wrench into last week. Tons of phone calls, messages and “We’ll call you back>”  However, Dr. Sprawls finally decided it would give Steven more recovering time after the long trip to Gainesville.  (For regular people, you should know this: It takes more energy for the cancer patient to travel wearing a mask to keep away cooties on a trip.  All the second-hand breath fogs up the old sunglasses, overheats the brain, cuts down on the oxygen going to your medulla oblongata and scares the shit out of everyone in the turnpike rest stop men’s room!)

So tests were OK last Friday and Dr. Sprawls had Steven set up to go into the hospital yesterday.  “Supposed” is the operative word there for all the detective types reading!  I took the day off from work to keep him from bolting and to make sure he got settled in OK.  It’s getting harder and harder for Steven to get up the mental strength to face 4 days of IV drips that he knows are poisoning him.  So now, it’s like tricking a dog to get into the car to go to the vet.  Only Steven doesn’t fall for Beggin’ Strips and hunks of cheese.  So I have to entertain him and keep his mind off the chemo until I can lure him into the car and lock it down!

IMG_1005Needless to say, when the hospital called on Monday afternoon to tell us they still didn’t have a bed for him, so they wanted him to wait until this morning.  I was just thrilled that I stayed home from work.  Not that I’m loving work so much anyway these days.  It’s general knowledge that the builder I service is trying to boot our company out of the design center business and staff the new Design Center with their own peeps.  Yeah! I could be without work.  The monumental repercussions of that are so enormous that I can’t even fathom it.  Everybody in my company keeps telling me not to worry, but that’s what they told me LAST TIME THEY LAID ME OFF…WITHOUT INSURANCE!!!!  Sometimes it’s just so hard for me to pick who I should HATE!

I can’t decide if this is a case of, “Psst!  Come here little girl.  Look at the box of puppies I have in the back of my van.”  Or is it more like, “I’m a Nigerian Prince with ties to your family and I’ll direct deposit this $500,000 if you just give me the account number for your bank and your social security number.”  Or is it just simply, “Bend over and spread ’em!”

Whatever is happening at work can’t be something I dwell on right now.  We are so deeply entrenched in the insurance game at my current company, that I’d have to sell a kidney, an ovary and all my shoes to get us set up with new deductibles and out-of-pocket payments if I change jobs and coverage.  So I’m pulling the BMT evaluation game and not worrying as if I don’t even know it’s happening.  Surprisingly it’s working.  Except I have IMG_0941had unusual manifestations of aches and  pains, really weird dreams, inability to eat anything healthy and the sudden desire to run into traffic.  But other than that, I’m fine!  My back up plan is one I learned from George Constanza’s girl friend.  I’m going with the NO, WE’RE NOT BREAKING UP approach to any impeding doom!  Of course I like to keep busy, and I have been today.

I dropped Steven off at the hospital on my way to work this morning.  I got into my office, caught up on my emails and was in the middle of a conference call when he texted me.  They took more blood at the hospital and his lab work showed unacceptably low numbers for chemo.  So they booted him out.  90 minute drive to work, 4 hours on the job, 90 minutes back home to pick up Steven and head for home.  There I spent most of the afternoon wondering what the hell is going on and why haven’t I popped my spring yet.  I should, I could and I would, if i wasn’t so numb.  So Thank You Lord, for that!

 

widgetIf you want 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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That’s Good!

Just ShreveSince 2004, when Steven was first diagnosed with non-Hodgkins Lymphoma, I’ve cared for him while sick and tried to put him back together afterwards.  I’ve pretty much rebuilt him.  One year, for our anniversary, I bought him 2 new knees.  The 2004 steroids blew out his originals so I got an insurance “out-of-pocket maximum” deal that was Buy One-Get One Free if used by the end of the year!

Steven has had hernias, sun spots and lymph nodes removed.  He’s had some meaningful tattoos inked on his arms as positive reinforcement of the obstacles we’ve overcome.  And he’s had his head shrunk by both a therapist and a shrink just like a mechanic overhauls an engine.  He’s damn near perfect…except for the cancer!  All of that was the impetus for both my last post and for changing our Go Fund Me campaign to EXTREME MAKEOVER, CANCER EDITION.  Steven is a work in progress, getting made over inside and out, for the past 10 years.  As we come down the home stretch to the biggest makeover of his entire system, I’m putting this out in the universe one widgetmore time, and asking you to spread this around to everyone you know who might be able to help!  One more near death chemo session is coming next week and then we head to Gainesville for a bone marrow transplant!  We are and will be extremely thankful for any little boost that comes our way as we enter this next step in our adventure.

I’ve banged out at least 4 entries s since my last blog  post, but luckily I didn’t hit the ‘PUBLISH’ button WOMAN ON A LEDGEon my laptop or on my phone and that’s good!  The boo-hoo one was so whiny that I couldn’t stand re-reading it, the angry one would probably get me fired if anyone saw it, the bitchy one…well it was just plain bitchy without being amusing and I just don’t roll that way.  And the defeated one just sounded pathetic.  So that’s where I’ve been, how about you?

aur8371500004I’ve decided to focus on the good instead of the real.  We made it though the week with no hospital visits, no emergencies and no one falling on the floor.  For us right now, that’s good!  After being rescheduled 3 times because Steven ended up in the hospital, our appointment at Shands is tomorrow and we’re both ready, willing and able to go.  Again, that’s good.  Steven met with Dr. Sprawls last Wednesday for the weekly once over, and got a thumbs up.  He had a blood test and no one called telling us to race to the ER, so again, that’s REAL good!

The doc did tell Steven he had to get his crap together before our meeting with the BMT (Bone Marrow Transplant) team, because if he hobbled in like an old man, they might not jump on the chance to fix him.  They’re looking for good outcomes and part of our visit is to screen out the patients who look like they don’t have the stamina to make it.  So Steven took that one foot out of the grave and started doing leg lifts and walking around without assistance directly!  That’s good!

For me, this past week knocked me for a loop when I learned that a lot of the press about the great benefits IMG_1005provided by my employer don’t really pan out in reality.  I never did get my seniority back after I was laid off in 2012. (Seven months!  EEK!)  so I don’t accrue vacation time all that quickly any more.  It’s been a thorn in my side since I came back, but hey, at least I have a job!  That’s good!

A couple of weeks ago I had a heart to heart with management.  The outcome made me think that my  unusual situation would probably have some wiggle room which would allow me to occasionally work from home to keep earning some money.  I’m almost out of paid time off and we haven’t even gotten to the main part of this adventure!  Besides, working at home used to be mandatory for me. I know that managers do it, IT people do it, even order processors do it sometimes! But the times they are a-changin’!  No soup for you!

According to HR it’s more important for me to spend quality time with Steven (watching him sleep most of the day) rather than working at home.  It’s part of the “Be Happy” propaganda that’s hyped in the company’s “School Newspaper.”  Being home monitoring the email crisis threads that panic our design center hourly, while still available to Steven in case he needs me on the days following chemotherapy is not in my future!.  Quality time at home is important!  (I just wish it was important a year ago when Steven felt good and I was putting in 10-15 hours at home each weekend NOT keeping company with him!)  Be Happy!

WHERE'S WALDO?  WHERE'S MY CHECKBOOK? WHERE'S MY MARTINI?

To add insult to injury, instead of working from home I was informed that I qualify for Intermittent Leave.  It sounded great until my investigation uncovered this little gem.  Intermittent Leave is taking days off whenever you need without jeopardy of being fired.  That’s good!  Unfortunately it’s also without pay!  Not so good!  But,  when we go to Gainesville for the transplant, I can take Short Term Disability time off, which is good!  But like every yin-yang scenario, the bad news is….without pay as well!

IMG_0877That really knocked my socks off!  When speaking with the representative I mentioned that my co-worker just took off 8 weeks maternity leave and she was entitled to disability pay.  It wasn’t full salary, but it was better than nothing for her.  I was informed that in my situation, it’s my husband who needs the care, not me so it doesn’t count.  I was under the impression that maternity leave was there so new parents could spend quality time taking care of their new addition.  But no, according to the claims office, the baby is  considered my co-workers “injury” which is why she qualified and I don’t.  Her bouncing baby girl Injury!  With everything that’s happening so quickly, there’s just no time for Steven to get me “injured” so no paid time off for me!  But if I couldn’t care for 3 dogs, I’m probably too old to care for an “injury” anyway, so it’s a moot point!

There is a moral to this tale and it’s good.  Steven and I were watching TV in bed the other night cuddled Pond lily 4-3-11up next to each other.  I mentioned that is was really nice not to have the dogs building a canine wall between us…but I just couldn’t get over feeling guilty about giving them up.  Steven told me he put it in God’s hands and he was OK with everything.  I started thinking about that because I put it in God’s hands, too.  I just have a bad habit of second guessing God.  WTF?  That, my friends, was the revelation of my lifetime.  I do it all the time.  I pray for guidance, get it and then second guess it.  I know I’m full of it, but seriously, what gives me the chutzpah to second guess Diving Providence?

So, this is my first attempt at doing it right.  It’s all good!  I’ve had signs all along showing me the way we need to go.  There have been little answers to my prayers along the way.  I’m not worrying about Steven or money, or who adopted my dogs.  And that’s good.

widgetIf you want 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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I’D LOVE IT IF YOU SIGNED UP FOR MY E-MAILING LIST! IT’S JUST YOU AND ME, BABY! I DON’T SHARE MY TOP SECRET SUBSCRIBER LIST WITH ANYONE, SO YOU WON’T GET JUNK OR SPAM OR FOUND IF YOU’RE IN WITNESS PROTECTION! I JUST WANT TO LET YOU KNOW WHEN I POST A NEW ENTRY. SUBSCRIBE HERE