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.

GRRRRRRRRRRRRR!!!!!

DUMBASSMy heart is kind of breaking right now.  I now understand how so many cancer patients feel when the system fails them.  We have been incredibly fortunate up until now with our caregivers, time lines and insurance coverage.  Suddenly it seems that has all gone to shit!

It’s been weeks since our first visit to Shands and two months since Steven’s last chemotherapy treatment.  In the interim, his cancer is gaining strength and because of the most bizarre series of circumstances that include the Christmas holidays, the yearly Lymphoma convention, our doctor’s annual mission to Haiti and pure bad luck, Steven has become a hot mess.

Finally, on Monday night we got a call from Dr. Sprawls.  For whatever reason, all the other doctorsI'L TAKE CARE OF YOU in his practice who were covering for him during his scheduled absence, chose to ignore Steven’s calls and updated messages concerning his plummet into really bad shape,  So that particular call was a ray of light.  Dr. Sprawls said he was going to get Steven into the hospital for the first round of RICE chemo, before our trip on February 2 back to the Bone Marrow Transplant specialist in Gainesville.  Dr. Sprawls decision was the first time in a long time someone has finally taken the steps to relieve Steven’s symptoms and push back the cancer to a more manageable place.  I was SOOOO excited. I finally felt like we were back on track for proactive treatment of Steven’s pain and suffering.

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ANOTHER NIGHT WITH STEVEN PASSING OUT FRO THE EXERTION OF GETTING TO THE BATHROOM!

I know that sounds weird, but Steven is way past my care givings abilities.  I’m good to a point, but I’m not a trained professional and once he started passing out again, not from chemo side effects, but from the cancer itself, I no longer felt knowledgeable enough to be trying to figure out how to keep him safe, comfortable and without pain.  And I’m not in the physical shape to be lifting and toting him from room to room.  And the nausea just adds to the daily trips to and from that most excellent comfort height toilet…something that everyone should invest in!  So the idea that he would go to a place where there was a whole staff to take care of him, options for elimination that don’t involve maneuvering to the bathroom with blood pressure of 90/50 and the meds that would help fight the current symptoms mixed with the industrial strength pain killers that you can only get through and IV drip, I was thrilled!

But Tuesday came and there was nothing.  On Wednesday the hospital told us they had to order the chemo drugs because they don’t stock those.  Today is Thursday and I took the day off from work to get him settled.  It was early afternoon when QUIT YOUR BITCHINwe finally learned that the 3 days of continual chemo could not start today because there is no weekend chemo nurse to oversee his treatment.  Seriously?  There are nurses who specialize in chemotherapy?  But they only work during the week?  And a hospital won’t call one in for the weekend, even when someone is in dire need?  Does that sound like healthcare to you?  I work in a business where there are no “real” emergencies!  Yet we get crap all the time from medical people because we don’t see clients on the weekend.  But NO ONE DIES IN DESIGN CENTERS!  Maybe if one of those high faulutin’ morons worked a weekend shift to care for a patient who actually could DIE, they might be able to squeeze in a weekday off to come to my place of business!

BEING A LADYegSo now we wait…and I worry that something will happen on my watch.  We’ll go to Gainesville on Monday and then check Steven into the hospital on Tuesday.  So another weekend where I watch him suffer without being able to help him feel better.

I’m upset, pissed, scared, angry and thankful that this is the first time we’ve had to navigate a cluster like this one!

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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