I have a back issue. At the ripe old age of 39 (for several more months thankyouverymuch) I have a degenerating disc between my L4 and L5 vertebrae. There is nothing surgically that can be done – it is a gift from the genetics fairy – but, as an added bonus, I have a fairly unstable and unsupported lower back that does benefit from a regular course of pilates.

For a couple of years I was pretty diligent about it. Although, once a year I’d fall off the exercise wagon and get lazy and, lo, there’d be a back blow out the likes of which are biblical in pain proportion. Almost three weeks ago I had yet another blow out. While sitting in my car at the grocery store as I was turning to look over my right shoulder to back out of the parking space. And it was spectacular.

There are many, many things that go into dealing with a back injury. No, I said that wrong . There are many, many humiliating things that go into dealing with a back injury. And these things (along with the sheer excrutiating pain) are now my permanent reminder that I will never, never stop going to pilates ever again.

But right now? I’d just like to get to physical therapy. Seriously. I’m so excited to go I can’t stand it. (Though I will tell you my pedicure is ATROCIOUS since I can’t really get around anywhere and doing it myself kind of isn’t an option right now. I hope they can forgive me for a week.) I’ve never looked so forward to exercise in my whole life. And I’ve now also realized that, thanks to the latest food information, I’m also really quite motivated to raise the bar a bit on my health level. I’ve declared 2010 The Year of Abs, Ass and Arms. Oh, and heart. I need to get some cardio work going up in here tout suite.

For those of you who have followed my mom’s story you know of her medical challenges. (She’s totally fine by the way and kicking much as in the research protocol she’s involved in.) Well, here’s one for you. At the age of 63 my 5-foot-one-half-inch, cancer-beating, chemo-taking, powerhouse of a mom is working out right alongside professional football players and RUNNING THE COMBINE. And holding her own.

WTF is MY excuse?!

Right.

You don’t get one either.

Hi, Playgroup Dropout readers! Welcome to OutsideVoice. The Swimmy’s pretty damn cute, huh?

Yeah. We like her, too.

So, my Friday is more Fabulous because it appears my mom has turned the corner. Cautiously. But turned the corner nonetheless.

But I will tell you that Thursday did not start out Fabulous (yes, capital “F”). At 7:00am on Thursday my dad called and said I’d better come to the hospital – things were not looking good and by the sound of his voice and the words he spoke, I knew what he meant.

I’m convinced that the rest of Thursday morning and the drive to the hospital were done on autopilot. I have no solid memory of what I handed off for work or how I got to the hospital safely. Must have been that “unconscious consciousness” thing.

In any case, I arrived at the hospital prepared for the worst. Instead, I found, well, not the worst. In fact, I found pretty damn good. I found the following phrase from one of her (very serious and not so touchy-feely) doctors,

“I believe we have turned the corner.”

And THEN I found this other phrase from the pulmonologist,

“There is a significant improvement in her chest x-ray.”

Well, fucking-A, Boy, Howdy! You’re not kidding, right?

Nope. They weren’t kidding.

We said nothing to anyone because we were trying to be cautiously optimistic. Each hour here in ICU really does bring something different (and I’m not just talking about the food), so we didn’t want to start jumping up and down until we saw some kind of trend that proved the statements were, uh, true.

But then, there was the most telling milestone. Better than any clinical finding or x-ray. This kind of thing should be in the textbooks that medical students study.

She made a sex joke.

Yep. You got it.

Now, to the cousins that are now reading this site, you know how completely NOT SICK-LIKE that is. And? How completely out of character. Because while Mom has a very twisted sense of humor (especially about anyone farting), I’m pretty sure I’ve never heard her talk about sex. Ever. In 36 years.

Must be the oxygen.

Either way… We’re better, bitches!

Happy Fabulous Friday! And thanks to all of you who have sent your thoughts and prayers to me and my family. Each and every one was felt and appreciated. And to thank all of you, here is some more Friday cuteness.

You know, to get you through the weekend.

This was quite a day.

I spent the day at home with The Swimmy today because she woke up with the seasonal cough, sore throat, stuffy head. Because of that, I couldn’t go up to the hospital because I was too afraid to bring any new germs into Mom’s ICU room.

About 8am, I was waiting for my dad to call with the update and I just kinda felt it wasn’t gonna be great news. You’ll read I was right in a moment, but here’s what happened after he and I got off the phone. I laid in bed for a moment digesting the latest findings, a bit heavy hearted (and a little too emotional because I am in the middle of the second period I’ve had since Benjamite was born – great g-ddamned timing). I sighed deeply, turned my head to look out the window at a lovely tree and saw?

Two squirrels fucking.

And that’s all I have to say about that.

Okay then.

When we started this Battle, a doctor said to us Mom either has a recurrence of breast cancer that may have metastacized to the bone, or multiple myeloma – pray for the breast cancer. We were given two awful scenarios – and we prayed for the lesser of two evils.

Well, we lost that coin toss. And headed to Little Rock, Arkansas.

Mom had a rough night last night. Very restless and couldn’t sleep. She’s disoriented because she’s been in the hospital for so long and days run into nights and nights run into days. The medicine, and previous lack of oxygen, makes her hallucinate a little or have portions of conversations that she “imagines” are happening. What is frustrating to her, is that she realizes this is happening and it makes her feel out of control mentally. I imagine that’s what a beginning Alzheimer’s patient must experience.

She finally went to sleep at 5am, after they did the daily chest x-ray to see how her lungs are doing. Today’s x-ray showed no progress in her lungs – again, good and bad. But, it also showed a slight enlargement in her heart – a concerning clinical finding.

We called our cousin, a noted cardiologist in these parts, in for a consult and he said it could be the beginnings of congestive heart failure. And here’s the kicker – that’s the good news. Once again, we’re presented with a couple of shitty options – one that sucks and one that sux and is treatable.

They’re going to give her another round of lasix (diuretics) to see if we can get some more improvement in her lungs like we did the other day. If that works, we might be able to stay on that course (assuming her body can take more of that consecutively). If it doesn’t, we have to put a catheter / probe up around her heart to do a little measuring of some pressures to see if we’re faced with congestive heart failure.

So, we pray the lasix works. If not, we pray for congestive heart failure. ‘Cause it just gets worse after that.

I used to love Vegas. I loved the gaming, the risks…But I’m getting sick and tired of thinking about odds, choices, percentages, statistics… So if the House always wins, who gets to be the house in this scenario?

I’d like Mom and Dad to catch a break. Let THEM be the House for once. Let them hit it on the river card. Let them catch eight the hard way. Give ‘em Blackjack.

Please.

There. I asked nicely. ‘Cause I was raised right.

I have this saying that I seem to use with abandon, “Every day is a new day.” I’m usually using it in a somewhat sarcastic way by giving it as an answer to the question, “How’s work going?”

“Well, every day’s a new day.”

I believe I’ll retire that phrase after this ordeal. Because, not only is every day a new day, every HOUR is a new hour. Seriously.

When I arrived at the hospital this morning, the news was that her saturation rate was 99%. All night. That my friends, is almost progress. I say almost because in medicine, it’s never just one indicator that allows you to declare victory. Well, rarely one. (A biopsy is pretty damn definitive – either way.)

So, with oxygen going full blast, her sat rate had increased. Good and bad. Good that it increased and held. Bad that the only way she stays at 99% is by full-throttling the oxygen and that if she takes off the mask, it drops to a scary 85% almost immediately.

But I’ll take that.

Then, we wait for the (now) daily chest x-ray. If it’s worse, we know what that means. But, it comes back and we’re told by one doctor, “It’s about the same.” For many, this would be cause for concern. Given the aggressive nature of the lung issues, the fact that nothing had progressed any further is okay. Later, a pulmonologist will tell us that he believes the x-ray shows a roughly 15% improvement. Not huge, but an improvement.

I’ll take that, too.

Yesterday they gave her medicine called lasix which is essentially a diuretic that helps the body get rid of excess fluid – because they thought part of the problem is fluid in her lungs, not just pneumonia. She basically peed off three LITERS of fluid yesterday and today continued to “output” a ton of stuff. Could this have helped her lungs? Don’t know. Hard to say, but it does mean her kidneys are functioning well.

Yep. Take that, too.

Today they let her eat real food. And she did. She even commented that this particular hospital has the best “institutional spaghetti” around. It’s delicious. And she gobbled it up in hundreds of tiny bites. You could see her perk up a lot after she ate. Like the food actually gave her some energy.

You bet we’ll take that.

But the best sign today was when my aunt noticed someone had left what looked to be a Louis Vuitton bag on a desk outside my mom’s ICU cubby / room for quite some time. She couldn’t believe someone would just leave a Louis Vuitton purse out in the open like that – completely unattended. Without missing a beat my mom and I replied in tandem, “It’s not real.” Even through oxygen-starved moments of dimensia my mom could make the knowledgeable fashion faux pas call.

Bring that shit on.

We aren’t declaring victory and we aren’t out of the woods by any means. But, sometimes it’s the little things. And who knows, the little things could lead to more little things. I’m not greedy. It doesn’t have to fix itself in 24 hours. I’ll be patient.

But tomorrow? If there are more little things? I’m hoping to say we’re on the first stone on the long path to victory.

And I’ll take that all day long and twice on Sunday.

Mom was moved to ICU today. When I arrived this morning, her pulse/ox was only at 88 (normal is mid-nineties), which means she wasn’t getting enough oxygen. After a chest x-ray that was ordered “Stat”, we got a radiologist’s report that things hadn’t changed much. Which in this situation was a blessing. Couple that with the fact that her fever has all but gone away, we exhaled a little bit.

But then the pulmologist came in. And his opinion made us catch our next breath. His opinion was nothing like the radiologist’s. His was much, much scarier.

Basically he said some kind of virus (best as they can tell) has roared through her lungs and done considerable damage to the areas between the lung cells – or the interstitutal areas and she was losing lung function. She needed to be moved to the ICU where she could receive oxygen in a better way and we needed to try massive doses of steroids to hopefully reverse the inflammatory process that is progressing aggressively.

The message was not delivered gently, but it was clear. If the steroids don’t work, we’re going to lose her.

Is it ironic that it feels like we are holding our breath for the steroids to work – and my mom is struggling to breathe? Or is it in bad taste? I don’t know. My day started at 4am and I lost my ability to think clearly hours ago.

We’ve spent the day making phone calls to friends and family with updates – each with the caveat that Mom, my Grandmother and The Swimmy know none of this – and never will in a perfect world. We visit with friends and family and apologize lovingly for not allowing them the opportunity to visit my Mom…because if she saw a flood of people showing up at the hospital, she would know something was wrong. So, we keep the secret. We shoulder the burden no one should ever have to carry. We protect until we can’t any longer. It’s all we can do, and the most respectful act we can carry out.

There is so much more to write, but I just can’t get the thoughts out of my head and on to the paper. So instead of fumbling through the words that just aren’t coming, I’m going to hit publish and go to sleep.

But before I do, I’ll say the prayer The Swimmy and I say every night.

G-d bless the ICU, and all of our friends and family. And keep them safe and happy and healthy. Amen.

Okay, so I’ve missed more than one post in NaBloPoMo. And I might have not told the whole truth as to why.

Mom is still in the hospital. It’s been a week as of Sunday. Her pneumonia / infection showed signs of improvement, then it didn’t. She’s going backwards. Whatever antibiotics / anti-fungals / anti-everythings that being given to her aren’t working. Tests are coming back with nothing. The fever goes away for several hours, then comes raging back. They’ve put her on oxygen and then increased it so that she gets an appropriate amount in her bloodstream to keep all the organs healthy. The doctors have no answers and – here we are again – a weekend with the primary doctors out of touch or not rounding.

Sometimes I hate healthcare.

Dad is exhausted. Mom is worn out and scared. And I am, for the first time, uncomfortable with what’s going on.

As morbid as it sounds, I am fully prepared for her to succumb to myeloma. It makes sense. It’s an insidious disease that will eventually run its course. We know that.

But that’s supposed to be years from now.

I am completely unprepared for her to be a victim of something that stemmed from a treatment AGAINST myeloma.

I look at The Swimmy and think, “Please, G-d, don’t make me have to tell her something horrible. She’s only five. Let her know Dodi for awhile longer. Let her have as many grandparents as she can. Please don’t make me break her heart like this.”

Then I look at Benjamin and think, “Please, G-d, let him know Dodi. Don’t just let him learn about her from other people. Give him the chance The Swimmy got. Give Dodi the chance to know him. Please don’t break both their hearts.”

Please.

Seriously.

So, my mom has had to go back to the hospital – again. She’s got some mystery infection that is causing problems and they advised my folks to go back to the hospital so that an infectious disease person can evaluate her and run some tests. It seems that even though her white cell count has come back, there’s still some strange bug her immune system still can’t fight, so she’s got this 101 fever that is causing some concern. Plus, she feels like ass. And both have got to stop.

So.

Off to the hospital (again!) and sitting in the ER – always fun on a Sunday. They finally get her into a room some six hours later and get her settled. Because it’s a Sunday, she gets to see the infectious disease person, but her regular oncologist and ENT are unavailable because they are not on call.

In walks the guy covering for her oncologist. We’ll call him Dr. Cocksucker. ‘Cause I’m feeling generous tonight.

Dr. Cocksucker appeared to be a good doctor for the first five minutes of his six minute visit. It wasn’t until the last minute when he let his inordinately ignorant self show.

“Well, you know, they are making great strides with multiple myeloma. Doesn’t really matter where you’re being treated, most folks are living five years these days. But never ten.”

My dad said you could see my mom’s spirit just get crushed. Why on G-d’s green earth would you EVER say something like that to a patient?! Osler is probably rolling over in his grave.

First do no harm, motherfucker. Remember THAT one?

Let us review.

My folks have been traveling back and forth to Little Rock, Arkansas for almost a year now because THOSE folks are getting results in treatment and are committed to a cure. It has been unbearable lonely and difficult for both of them.

My mom is g-ddamned tired of being sick.

My dad is g-ddamned tired of her being sick.

She has been (pay attention now, Doc,) DISEASE FREE since her second chemotherapy round. DISEASE. FREE. That’s SIX MONTHS.

How dare you bring such negative statements into a room of a patient who is being treated at your hospital NOT for myeloma – but for a sinus infection problem.

How dare you undermine all the work the doctors have done AND all the work my parents have done to this day.

How dare you treat a patient no differently than you would a lab rat. What if it was YOUR family member lying there?

My dad doesn’t have the time or energy to address this with the physician, his practice and the hospital. He’s too busy trying to pull my mom out of a lovely depression caused by this guy.

But I do. And I’ll be there tomorrow. 11:30am. Strap in.

I left Little Rock today. In my rearview was one very tired, beaten down patient and her equally tired, frustrated (and a bit sad) husband.

I spent most of my breath uttering the words, “Okay, what do you want me to do?” because, seriously?, I offered very little except a warm body, which was enough sometimes.

Mom has struggled with a really high fever for the better part of a week – and that’s just (a) unsettling and (b) scary. What’s more aggravating is that no one can tell us where the g-ddamned thing is coming from already. She’s subjected to test after test after test which takes hour after hour after hour of waiting with very little answers at the end. The answer is always, “Well, we just don’t know. We’ll just have to wait and see. Don’t worry, we see this all the time.”

Well, dickhead, WE don’t see this all the time. WE are not big fans of 104 degree temperatures and uncontrolled body functions and are pretty sure they are BAD things that should be stopped.

Or did I miss a memo?

My folks ran into some of the best and worst nurses this week. I observed some of the same, along with some mediocre doctoring.

(As an aside, I am a terrible person to have sitting around a hospital. You see, I work for a hospital, so I know some of the bullshit that goes on from the administrative side. But, I work for a hospital that is about to launch a care model that is how medicine SHOULD be delivered – and so my standards for how a patient should be cared for are THIS HIGH. I hate to be reminded that this is not how it is. Especially when it’s my mom who’s the patient. Aside over.)

My favorite was the surgeon who came in spouting all this crap about an upcoming gall bladder and abdominal / pelvic scan. She went all the way down the path of “oh, we’ll look at both and this could range anywhere from nothing to having to remove her entire colon.”

Are ya kidding me? Why would you say that? And, more importantly, why would you sit here and talk about this test FROM ACROSS THE ROOM WITHOUT EVER LAYING A HAND ON YOUR PATIENT?

Maybe you should examine her abdomen (which the attending physician said was getting better)?

Maybe you should temper your discussion in front of your patient who is so tired she can’t stay awake?

Maybe you should consider how you would act if it was YOUR mother laying in that bed?

But!

I talked with Dad this morning and Mom’s fever was never higher than 99.4 all last night – and that is something to behold, my friends. I’m hopeful we’re now going to be moving in the right direction.

And!

As a welcome home present for me, Benjamite slept from 9pm to 3:57am. Love that guy.

Live from Little Rock – it’s…oh, my G-d it’s Little Rock.

Yep, I’m here. First, let me say that Little Rock is a lovely little town. Everyone is very nice. Really nice. Like, cars actually stop and wait for a pedestrian to cross the street nice. It’s unnerving. Rush hour traffic is 4 cars waiting at a light. Seriously!

My folks were lucky enough to score a very sweet pad in an awesome high-rise building that overlooks the river for their stay here…too bad they aren’t here – the hospital has nothing on this place. Out the window in bedroom number one is the (wait for it)…Clinton library…complete with his 6,000 square foot residence on the top. I can’t even look at it.

After visiting with my mom at the hospital for awhile, Dad and I went to grab a bite of dinner. Actually, we decided to go find a restaurant where we could pick something up and bring it back to the FabuPad to eat. So he took me to the Dixie Café (or something like that). The menu was as you’d expect, fried catfish, fried chicken, fried okra and… fried corn on the cob.

I shit you not. My arteries got a little constricted just reading it.

I didn’t know what to expect when I came here, but I will carry the following image in my head as a landmark memory of my time in Little Rock, brief though it may be. I got off the plane and headed straight to baggage claim. I was waiting at the carousel for the handlers to start throwing baggage down the chute when I noticed the carousel next to us was for a Delta flight coming in from Orlando. The passengers had on the requisite Mickey Mouse shirts, bags with Magic Kingdom on it and many, many Disney Princess items scattered about. But upon second glance, I realized most of the passengers also resembled each other in another way.

Most of the men were dressed as follows:

Cut off shorts (khaki)

Flip flops of varying degrees of “worn”

Hunting shirts

HUNTING SHIRTS, people. Not t-shirts with hunting slogans. ACTUAL HUNTING SHIRTS.

That is all.

Mom is holding her own, but not out of the woods just yet. I am of no help to her whatsoever, except that I bring stories from home and can try to carry on a conversation about something other than drugs, nurses and vital signs for a short time. She’s had some terrible nurses (OMG) and upon hearing these stories I immediately told my dad to pick up the phone to call a family friend here who is closely associated with the medical center so that she may open up a can of whoopass on the appropriate hospital administrators. He wasn’t so inclined to do that immediately (as he was busy trying to save my mom’s life), but today when she called to check in he did mention a few details of their difficult experiences. Thirty minutes later they had two administrators in mom’s room apologizing and addressing the issues. Damn straight. And we ain’t done yet, bitches.

Again, I know I can’t do much, but I know where to find the big sticks to swing in a hospital. And I brought my bat with me this time. I’ll relay some of the stories later after everyone is past this.

Dad’s at the hospital again for the night – he hasn’t slept in 40 hours. Because of the horrible nursing experience – and one horrible night where he thought he’d lost her – he won’t leave her alone until she’s really well. It’s a sad state of affairs, but he has had to play doctor more than once on this journey because the care is more than a little disconnected, to say the least.

I, for the first time in 10 weeks, will get to sleep all night…allegedly. I doubt I will, though. And then tomorrow I’ll go sit with mom while dad comes back to the FabuPad to work a little, shower and sleep.

That’s about all I can do. But at least it’s something.

I haven’t written about my mom’s battle with myeloma in awhile because, well, there hasn’t been much to write about. She was recovering from her first stem cell transplant for the better part of a month and half and then was dealing okay with the remnant effects of that.

Mom and Dad had to return to Little Rock the first of September to do the second stem cell transplant. This was the subject of MANY discussions within our family for a variety of reasons…timing, need, recovery issues, dangers… they were all still there.

You see, in this battle, the weapons are as deadly as the enemy. And there are reasons NOT to use them.

But, right now, she is disease free. And that’s a hard argument to negate. The treatment regimen is working. Perfectly. But the treatment effects totally suck.

And that brings me to where we are right now.

From the massive chemo before this current stem cell transplant mom is now neutropenic, or has roughly 2 white cells in her body, which is where she is supposed to be right now. The problem is that she has contracted a dangerous bacteria in and around her colon that is causing major problems and now she is in jeopardy from the very treatment that is supposed to be extending her life.

It’s amazing where science has brought us, isn’t it?

The next four or five days are important ones. I can’t say it any differently or any plainer. And I’m off to Little Rock once I get things in order here.

Happy New Year to those who are celebrating it – and happy Friday to those who need it.