5.20.2013

Accompanied Minors Only

Sitting on the edge of your seat awaiting the resolution to the "You can't have your kids here!" confrontation? Me, too!

Last Tuesday, after spending the morning cleaning up 2-year-old vomit thanks to a visit from the Vomit Fairy, I took my overly bleached self over to have labs drawn and meet with several of the parties involved in what would ultimately be a resolution to me and my little delinquents in the oncology building. It wasn't just about me bringing my kids into the building for labs, but the outcome of everyone who brings children to the building - be it a patient or a caregiver or some weirdo who thinks bringing kids to a place like that is fun.

Don't worry, the behavior of the clearly child-loathing administrator was also addressed, and I think a passive apology was offered for the way in which she approached me, and accused me of things that did not apply.

I will start by saying my rage had since returned to that special little pocket I keep it in before we walked into this meeting. Kyle's presence there was nice, but unnecessarily needed to contain me. In his presence, I am civil and try not to crush people with my intellect. Especially people whose salaries are paid by the bills I incur while willingly making myself very sick every other week.

The biggest of pictures boils down to this. The oncology center is seeking a national certification that requires no child under the age of 12 be allowed in the "clinical" areas of the building, or be unsupervised. By clinical areas, they are referring to what Merrick knows as the "off limits" tile floors. Tile floors = sterile environments = clinical areas = no kids. Simple enough that even my 5-year-old knows the rules and follows them.

This certification is something they've apparently wanted, and me standing for 2 hours in a crowded hallway with my calm and contained children just reminded everyone it was time to start the discussion and get the ball rolling. I know that though I am not the cause of these changes, my presence there that day was probably the catalyst to a discussion that was long overdue in the management of that facility.

As far as my personal 12-and-under crowd being unsupervised, I'll admit to strapping the one that doesn't speak English yet to the stroller, handing him my iPhone, and telling Merrick to not take candy from strangers. In the past, when having labs drawn, awaiting results, or getting a shot, I've always been within eye sight of my unattended (extremely well behaved) children. I am there, I can see them, they know what my evil death glare means, but they are technically unattended by their mother who sits 5 feet away in a "clinical area." Because my children are trustworthy in small doses, I've never had any issues leaving them in such close proximity. They literally sit there and stare into their Apple products like a bunch of drugged up patients of Nurse Ratchet.

So the bigger picture is that in a few short weeks, in following with this national certification they are chasing, I won't be able to take the boys with me for my labs. I can bring them into the building, but they must wait with a responsible adult that I probably should know in advance. I briefly considered paying the first person I saw sitting on a bench, knowing there was a good chance that same person would be sitting on the same bench when I walked out.

This brings me to another point that was made, and one I never considered. Speaking from the clinical side, should something medically urgent happen to me while I'm there having labs drawn, what are they suppose to do with my kids? What would happen to my kids if they needed to get all crazy and call 911 on me? How could they survive the 15 minutes alone with my kids until either their father, a grandparent, or a friend could show up?

And while they were busy pondering that question, I secretly wondered what would happen if I passed out at Target over some amazing deal. Who would watch my kids then? Will I soon be banned from taking them into Target, too, just in case I have a medical emergency and no responsible adult can step up and sit with my kids until back up arrives?

There were other reasonable and rational thoughts and scenarios passed around. Some sounded logical, and some sounded illogical to someone with a compromised immune system who spent the morning cleaning up vomit. But in the end, because of no fault of my own, it's going to require more effort, time, and stress on my part to get through the next 10 rounds of treatment.

Ultimately, I'll be driving to a facility that is 30 minutes farther away to better suit the childcare we have available to us. I'll have to drop my kids off with the plethora of friends willing to watch them, drive to the oncology building, spend 20 minutes getting my labs done, drive and pick my kids up, and drive the 45 minutes home. So at the very least, what would normally take less than 45 minutes door-to-door, is now going to take me 2-and-a-half hours at the very least.

Does it suck? Sure. Do I really have a choice? No.

In the mean time, I sat back in my recliner last Wednesday and watched someone bring a girl far younger than 12 into the very crowded infusion room - the very room that has a large sign stating: "No Children Allowed." And I wanted to stand up and scream and point and yell "RULE BREAKER!" Why didn't someone actually breaking the rules get called out? Why did it have to be innocent me who follows the rules to their finer points? But as so often is the case with rules and policies, you can't single out the one, so you have to apply it to the many.

After a morning of vomit, excessive laundry, lots of bleach, labs, shots and a meeting, I had the wonderful privilege of being rear ended while pulling into my driveway (literally) by a young fellow in his hot little BMW. He was in such a hurry to get home that he had no choice but to tailgate me turn-for-turn for that final mile as I drove. I was even kind enough to elongate the pressing of my breaks as I approached our house and use my blinker to turn into the driveway; but apparently it wasn't enough.

You see, he had just had "such a long day and just wanted to get home." I didn't bother to tell him what my day consisted of, though I so badly wanted to help put what he was considering a rough day into perspective. I knew my aged wisdom would fall on youthful, unreceptive ears. I just smiled and told him to be grateful it was minor, be grateful I didn't have my kids in the car, be grateful his airbags didn't deploy, and be grateful he wasn't having to deal with this on the side of the freeway in the rain.

So I may be groveling all the way to my next appointment for labs, but I will try to remember that I, too, must be grateful; grateful that thought we must make a pain-in-the-ass change to our course, it can be made on smooth seas with all the help we have surrounding us.

Almost home.











5.13.2013

Paging Dr. Greenthumb

You can grumble all you want when I bring up the topic of medical marijuana, but I tend to lean to the left on the subject, so grumble quietly to yourself.

Here in The Commonwealth, medical cannabis, as we shall refer to it here, is legal.

According to some fancy code found in some big dusty law book:

§ 18.2-251.1. Possession or distribution of marijuana for medical purposes permitted.

Shocking I know, considering we're not exactly living in Portlandia here.

Before you start to envision me rolling a big fat roach and sitting on the back deck while the kids play in the yard, know that I am not actually smoking medical cannabis at this point in my treatment. We actually aren't cannabis smokers in general, so you can breathe a little sigh of relief knowing Kyle will pass all future vocational drug tests. It's just not our thing.

And prior to being educated on all things cancer, I would have assumed they intended medicinal cannibus for people with end stage disease to ease pain and suffering, but I was wrong. It's actually intended to suppress nausea and increase appetite. And those are two things, my friend, that I am in need of.

It was suggested by many during treatment last year, but we never really got around to asking. I was slowly rebounding from my massive weight loss and rebounding relatively quickly from each treatment, so the need didn't really arise.

After stepping on my friend Mr. Scale before treatment two weeks ago, the obvious was getting more obvious. The doctor and his PA just had bring up my weight loss. My only excuse turned out to be the magic words they needed to hear. "But I have no appetite."

The magic words indeed, apparently.

A disco ball dropped down in the exam room and the party started. I was prescribed something called Marinol, or what I'm simply referring to as pot pills. Marinol is a synthetic cannabinoid, or what laymen like myself might better understand as fake weed in pill form.

It took a day for the major chain pharmacy we use to fill the script for Marinol, and I'm going to assume it's because they keep it locked up in some top secret bunker formerly filled with nuclear weapons. But perhaps it's so infrequently prescribed that they just don't keep it in stock.

Kyle carried the pills into my darken room and somehow in my nauseated half-slumber I heard him say "$118." That woke me up in a hurry and I demanded that he return it. Hell if I'm going to pay that much for something without a sample to see if it works! But the day wore on, he and the kids left the house and I threw caution to the wind. I knew I was going to need something to help, because at the rate I'm going, it will be time to downsize my clothes and send me into the Flyweight class after my next round. I have this irrational fear of being force fed cans of Ensure Guantanamo Bay-style, so show me the munchies little pill.

Sadly, it did nothing. It wasn't magical and I still felt sick. But I kept taking them, twice a day as directed, and I still felt nauseated and I still had no appetite.

Needless to say, I don't know if I'm going to be a repeat customer. I did get over my sticker shock, but if it's not going to make me inhale giant platters of Rice Krispie Treats, why bother.
Down the hatch you little pearl of wisdom!

5.12.2013

Kyle's Letter

At least he brings one women in his life flowers!
I think I caught a few posts on Facebook last week about it being National Nurses Week. I know a few, so I probably should have thanked them for all the nasty stuff we know they love to do. We can all use our imaginations. Or for some of us that have been poked and prodded in our nether regions, no imagination required! I know sometimes their job can make changing Lachlan's diapers seem like child's play.

Not that I ever underestimate him, but I was surprised that Kyle was moved by the cause and had drafted a letter to my very own infusion nurse, Nikki. Kyle wanted everyone that counted to know what it meant for us to have Nikki as our nurse, and how her ability to do her job made our cancer journey that much more meaningful. She is a huge piece of the big picture for us.

I personally think it takes someone special to choose the nursing profession, especially considering I have issues with things that ooze and smell. But to be an infusion nurse and to choose oncology takes guts. It is a job where you are guaranteed to feel the glory of survival, but the defeat of death. You will develop relationships will people who will not make it, and you are there to provide intimate care and comfort to people who are staring into the unknown. You have to make them feel like everything is going to be alright, when you know first hand that it doesn't always turn out that way. You are in a field where death is so often the inevitable.

So this week Kyle took it upon himself to honor just one person in our cancer journey who really does make a difference, even if I'm asleep the entire time she's taking care of me. He wrote a letter, copied it all the way to the very top boss and delivered it along with some flowers to her on Friday. I simply got a text with this photo, and have to say I was utterly impressed considering I had no part in any of it.

Here's what he had to say:

To Whom It May Concern:


In celebration of Nurse’s Week this year I’d like to share this story about my wife and our nurse, Nikki Spears.


Last year Nikki helped Sarah through an adjunct chemotherapy treatment.  12 times Sarah sat in that La-Z-Boy and held on for dear life.  Nikki was always keenly aware of what Sarah valued during the experience and always did everything in her power to make it happen - quickly but carefully.  Nikki didn’t need to be told.  She had a sixth sense for Sarah’s deep and unspoken uneasiness.  Probably a sense she’s earned from experience.  I preferred to think she was born with it.


Nikki managed it all with such grace, and I watched in awe.  The incessant and maddening alarms, the 20+ patient days of never ending apologies, the smell of Bojangles biscuits and popcorn, the thunderous snoring, the commotion when the lunch volunteers arrive, the obligation to wake up sleeping patients just to ask them what their name is.  


The hurried “goodbyes” to good friends she may never see again, the hurried “hellos” to new patients that have never been this scared in their adult life.


Some of the other nurses aren’t as strong - they are visibly on the verge of a breakdown.  I feel so sorry for them, they know they aren’t cut out for this, but they do it anyway.  Maybe because they have to, maybe because they love their patients – I don’t know, but I know they weren’t born with Nikki’s superpowers.


In February of this year we received confirmation that my wife’s disease has metastasized to her lungs and we reeled with devastation.  Grief spilled into us as the hope drained away.  The grieving process was intense, but after a few weeks it began to wane.  The more information we got the better we felt.  We were ready to stop feeling sorry for ourselves, we were ready to don our galoshes and start trudging through the mud again.


So there Sarah and I were, back at VOA Lake Wright; both pretty numb.  Our emotional fortresses were in place.


We saw Nikki in the hallway.  Nikki immediately says to Sarah “Hey girl, what are you doing here?”  She asked the question in a sweet and hopeful tone, but the answer was ominous.  


Sarah tried, but couldn’t summon a sound, and instead she broke down.  You have to know Sarah to know how remarkable this moment was.  Sarah is one of the toughest chicks I’ve ever met; she was a probation officer, until recently few people had seen the softer side of her.


I didn’t have a plan for this, I couldn’t process it, so I stood slack-jawed and watched it all unfold – my fortress blinding me to how important this moment was.


Nikki, on the other hand, rushed to Sarah and held her like a child, like a life long friend.  The more Sarah sobbed the tighter Nikki clung to her.  I, her husband, her life partner, stood there like an idiot, silent and emotionless.  


Nikki is and continues to be the single most comforting part of our experience with VOA.  She is the face of cancer care to us and the importance of this to us cannot be overemphasized.


I want to thank all the nurses that carry themselves like Nikki Spears.  And I want to thank the people that support them; the people that educate them, the people that console them, and the people that provide for them – no one could do it alone.


But most of all I want to thank you Nikki.  


I want to thank you on behalf of Sarah’s family, on behalf of Sarah’s friends.


Above all all I want to thank you on behalf of my two sons who aren’t even old enough to go in the infusion room where you do your amazing work.  Someday, when they’re older, and when you’re done saving their mother’s life, they will understand how amazing you are.


Sincerely,



Kyle Woody


For you all you nurses out there, whether you never see the same patient twice or become entrenched in one of the hardest journeys of their lives, you are appreciated for the job that you do.

5.07.2013

Unaccompanied Minors in Tow

Having cancer sucks.
Having cancer with kids sucks.
Having cancer with tiny little dependent children sucks the worst.

Last week I had an encounter at the oncology office that had me leaving in complete tears. And as a die hard city girl, I will stand my ground and put you in your place if I need to. But not on this day. What transpired in a hallway in the oncology building left me hoping I could make it to the parking lot before losing control, but I failed miserably.

I loaded the kids and the stroller in the truck before finally finding the semi-privacy I needed to let lose over what I consider to be one of the most traumatic experiences I've had since being diagnosed. Semi-private only because I had a 5-year-old in the third row who I could not hide from. As hard as I've tried to not let him see me cry over the last 18 months, all bets were off this time. I had to cry now, and explain later.

Up until this point, I thought that bringing my kids to the oncology building was like bring along therapy dogs. While waiting for my brief lab appointments, we could see people's faces light up, or brief interactions lighten moods. On this particular day I was sitting with Merrick reading through the only National Geographic he hadn't read in the waiting room. With her pick of empty seats, a patient chose to sit next to us, and I could tell she enjoyed listening to Merrick's inquisitive questions about green mamba venom and topographical maps. For those few moments, my little therapy kid distracted her from her reality in that god-awful place.

It's never intentional to bring my kids to that place. I'd love for them to avoid it if at all possible, as clearly it's not Disneyland. But given schedules, time restraints, and geography, all too often it's just easier to bring them for my weekly 20 minute lab work.

The encounter I was about to have was compounded by the fact that we had been there for 2 hours waiting for lab results that usually take no more than 20 minutes. On this day, a medical emergency outside the control of anyone in that building took all the players out of the game for a period of time. The place had to shut down, which in turned pushed appointments, and continued to crowd an already crowded waiting room.

Like a diligent mother, I drug my generally well-behaved children along to these brief lab appointments with all Apple products fully charged, plenty of diapers and snacks, and everything else we might need to survive the wait. It's no different than going out to dinner or getting on an airplane. It is a confined space where you'd rather not have to take your kids, but you prepare for them to be entertained none the less. Given these tools, my children were nothing less than quiet, calm, and contained as always.

While the medical staff attended to the emergency, I was left with two little kids and standing room only. My kids had both passed their hour limit of being entertained by technology, and Lachlan wanted out of his stroller. The natives were getting understandably restless. Still standing, I contained my brood in a corner, and continued to leave the few open chairs for those that actually needed them.

As the train got back on the tracks, the halls eventually started to clear, and I finally gave in to Merrick's continued request to calmly walk up and down it. My obedient son simply walked from one end of the hall to the other. After two hours of waiting, I was sorry that it was the greatest luxury of movement I could offer him.

It was then that I got called to the Principal's office so to speak. As I stood against the wall watching my boy calmly walk, I was accosted.

"Why are you here?"
"Why are your kids here?"
"We can't have your kids running around."
"Children aren't allowed in the infusion room."
"Nurse Jane is very busy and it's asking a lot of her to squeeze you in."
"You can't bring your children with you on your infusion day."
"Your son could trip an elderly patient if he's running around." 

I was already emotionally fried from my long wait and pressure I put on myself to make sure my kids where calm, quiet, and contained. This left me speechless. I couldn't believe an administrator at a cancer center was addressing, if not attacking me, with such insensitivity. I was patronized and made to feel like I had done something wrong. My stern public parenting was called into question, and I was being talked down to by someone who was clearly clueless that she worked in a building full of people dying from cancer. The moment made me forget that I was the patient - that I was the client.

The snarky and fiesty little me wanted to tell her that I can read, so on my first visit of the oncology building, I did read a sign that said "No Children in Infusion Room." 15 treatments later and my kids haven't been in the infusion room, or to one of my infusions. So why am I being treated like they were running around jumping on recliners?  Why am I being treated like my kids have been using the oncology waiting room as their own personal playground? Why am I being treated like an entitled parent?

As the hostile conversation continued, all I could think to say was "THIS IS MY REALITY!" I wanted to scream it.

I HAVE LITTLE KIDS AND I HAVE CANCER AND IT IS HARD! 

Find me that mother of very small children who loves dragging them into an oncology building every week for a quick check of her blood counts.

You can't, because she doesn't exist.

I stand out in that waiting room. I'm sure there are a few others that would gladly join me and scream that this whole process might just be a little harder for us than it is for everyone else. I've said in the past that there are no pissing contest with cancer. No one is out to compete is this strange little community. But I'm not trying to compete. I'm not trying to get special treatment. I'm not trying to bring attention to myself every time I walk through those doors pushing a stroller and hoping my baby doesn't drop his pacifier on the overly used carpet. I'm just asking those treating us to give us a little more grace, a little more understanding, and know that we're not just there as a cancer patient, we're also there as a mom fighting so hard to shield our children from what they should never have to see, and fighting so hard to have even one more day with them.