A local high school girls basketball coach died last week from complications treating acute leukemia. His students did what most high school kids do in this situation, they spelled out “We Love You Coach [Name]” in styrofoam cups stuffed in the chainlink fench and went about trying to make sense of their own grief and how they will deal with the rest of the sport season.

Normally, I would simply feel sad, send a silent prayer out to the family and keep going. But something was different this time. Something bothered me about this more than usual, so I decided to look up this coach’s obituary in the paper to see if I could make sense of this.

As it turns out, I had met him. And his wife. And his entire family though I never knew their name. His oldest daughter (5) was in dance class with The Swimmy. I began to realize that he left behind daughters ages 5, 3 and a little boy named his junior who is only 2 months old. The mom is a teacher, they have enormous extended friends and family.

But the thought of this mom having to lose her husband, deal with two grieving daughters so young and a little boy who will never know his dad is crushing to me. Intrinsically I know that, if that were me, as a mom I would have to rise to the occassion and deal with the awful situation to help my kids. But as I allow myself to consider that position there is a huge part of me that thinks I never could. And that is so utterly unnerving that I have no words to describe it.

Hey, look at me. No words.

Late Wednesday night around midnight the phone rang. We knew why the phone was ringing before we even answered it. (And, really? Does anything good EVER end up on the other end of the line when it rings at midnight? No. It doesn’t.)

“Hi, Pam? It’s Maurice. Gene has passed.”

And there it was. The words that we had all been anticipating for days, that were making Husband jump with anticipation every time the phone rang. They had finally come. And he was finally gone.

We decided not to tell The Swimmy until she got home from school that day. There were meetings to be had, details to be discussed and arrangements to be made and having her at school was better than dragging her through all that.

We told her about her Grandpa Gene and she was okay. We talked again about the funeral that would be the next day, the burial that would happen afterwards and all the things that she would see and hear tomorrow.

The next day we got up, hung around the house a bit, helped everyone get dressed for the long day ahead and left to meet the family at Husband’s aunt and uncle’s home. I told The Swimmy we would all be riding in a “special long car” (limo) and she was excited about that new adventure. The whole way to the temple she looked around, chatted about being in first grade and giggled about things she saw out the window. It was good to have her in the car – she brought some light as she always does to our little world.

When we got to the temple, I took her privately into the chapel where the casket was so that she could see it and ask any questions before we were all bombarded with friends and family and their kind wishes. She walked straight up to it and stood there for a contemplative moment. I kissed my fingertips and put them on the casket’s warm wood and she imitated me holding her hand on the wood a bit longer and with great curiosity.

She was kind and charming with the people who came to pay their respects. She shook hands and smiled and said, “Nice to meet you,” and “Thank you” right on cue.

When we took our places in the front row, she shared ArtsyDaughter’s lap during the service. She sat quietly and respectfully. Husband’s sister was very sad and cried openly and redfaced during certain parts of the rabbi’s remarks and The Swimmy couldn’t stop looking at her. I watched her face and could tell in her little head she was thinking, “Why are you so SAD? Am I supposed to be sad? I think I am a little…” And a few times I’d see her close her eyes and bow her head. I wasn’t sure if she was imitating what she saw, but it was touching nonetheless.

I kept waiting for the moment where all this would hit her. I didn’t expect tears, but I knew something would happen that would help her realize the weight of the situation – or the permanence of it. This moment happened at the cemetery.

We all loaded back into the limousine to ride to the cemetery after the service. Again, I walked her over to the gravesite privately to make sure she could ask questions or react without the hundreds of people around. We spent some time talking about the headstones – she was very concerned we wouldn’t know where Grandpa Gene was going to be – and reading the others that were around his site.

Then she wanted to see “the hole” as she called it. We walked over so she could look in and she looked straight down to see a cement liner at the bottom of a very deep hole. You could see on her face that her mind was racing. “That’s so far down. You can’t get out of that kind of hole…” When she looked at me I could tell that she was beginning to realize that this particular situation may, in fact, be irreversible.

We took our seats again in the front row before the gravesite and the cemetery workers placed scaffolding on top of the opening where the casket would rest. I told her that her cousins will take the casket out of the hearse and place it on top of this and then after some prayers are said, the casket would be lowered into the hole.

This time she sat on my lap during the brief service. I told her they were getting ready to lower the casket and she asked, “Mommy? Is Grandpa Gene sleeping?”

“No, sweetie. He’s not. Sleeping is different from being dead.”

“Why?”

”Because when you sleep, you are still breathing. Why you die, you don’t breathe any more.”

And as they started to lower the casket, she hopped down off my lap and walked up to stand next to it with her little feet together, hands clasped in front of her and head tilted slightly to the side in a pose that simply said, “I am sad for you.” I wish I had a camera to capture that image, but in my mind I know I will never forget it as long as I live.

It was at that point that Husband became redfaced and cried. And I definitely joined him a bit.

In Judaism we are taught that one of the finest things you can do (a mitzvah) for someone is to help bury them by placing a scoop of dirt on their casket. I talked with The Swimmy about this and, at first, she didn’t want to, which was fine. THAT could be a bit much for a six year old to deal with. But then, they brought out a small pail full of sand/dirt and a small hand trowel and she decided it was okay. She may have thought she was playing sandbox, but I think she felt more comfortable with the little shovel as opposed to dealing with the full sized one.

She was so okay with it that she put 6 scoops of dirt and I finally had to stop her. I told her that this next one was the last one so she took a scoop, placed it over the casket and said, “G-d bless Grandpa Gene.”

I might have cried a little more.

As I think back, I know I wrestled with whether or not she should attend the funeral and burial. And I now know I made the right decision. I am amazed at how well she handled everything and completely blown away by her thoughtfulness, inquisitiveness and compassion that she showed. Oh, sure, there have been more questions as the days went on, but she continues to thoughtfully consider the answers and weigh in from time to time on her experience.

As a parent, this has completely floored me. This little mind and heart asks such complex questions and all I can do is try to be straightforward, honest and simple in my response. And it’s hard. It’s hard to boil all this down to simple, meaningful words. It’s hard to figure out a way to educate not only on life, but on faith…to try not to instill fear of the unknown…to help her not feel left behind but to feel connected to those who are with her now AND those who have gone before us.

I’ve gone to bed exhausted these past few days, but we’re all sleeping pretty peacefully in the scheme of things. I hope you are, too.

My father in law has battled stage 4 lung cancer since a surprising diagnosis in April of this year. A few days ago, after several painful days in the hospital and his blessing, the family started hospice for him and was told it would only be a matter of days before we lost him.

It was now time to have that discussion with The Swimmy for the first time in her little life. I was a little unclear about how to fill in some of the details, but thanks to two friends named Wendy I got some good advice and Husband and I sat down to talk with her about her Grandpa Gene.

She was sad, and I think seeing her Daddy cry was a little surprising to her, but I believe it went okay. She asked good questions and we answered them truthfully.

In the hours that followed, she had some more questions – some I anticipated, some I didn’t. It’s charming to me that even through our sadness and other mixed emotions that we can still find kid-logic-induced humor in the midst of this. As I was tucking her in, this is how it went,

“Mommy, how does Grandpa Gene get buried? I mean, how does he get in the ground?”

“Well, some men who work at the cemetery will dig a hole to help.”

“But won’t he get dirty?”

“No, sweetie, he won’t. He will be in a special box made of wood called a coffin so he won’t get dirt on him.”

“Well, but what about his clothes? How will he get them?”

“He doesn’t need his clothes any more. So it’s okay.”

”You mean he’ll be naked?!”

”No, he’ll have clothes on. But he won’t need any other ones.”

“Oh. But won’t he get sweaty?”

“No, Boo Boo, he won’t. When you die you don’t need your body any more – and it doesn’t work any longer. So your body stays here and the special part inside of you and the little piece of G-d go up to be with G-d and watch over everyone you love.”

“Just like Earline?”

“Yes.”

“So they’ll be together?”

“Yes.”

“That’s good for them. But I’ll still miss them.”

“Me, too.”

Every day she asks if Grandpa Gene is gone and I tell her not yet, but he’s resting comfortably. She seems okay with that. I’m sure there will be more questions, but in the meantime we wait.

G-d bless her Grandpa Gene.

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.