Bad Medicine ... Good Management

Well the health care system may be messed up, doctors may still have huge egos and there may be no simple solution to our complaints, but I have to give kudos to the hospital for wanting to know, in painstaking detail, exactly how bad our experience was. I honestly believe that the Quality Control Chief is invested in learning from us and while publicly tarring and feathering Dad's oncologist may not be an option, I really do think our letter has made a difference.

Dad would like to know we're using his experience to help ease the suffering of other patients. At least our anger can be directed at something constructive, rather than vindictive.

But it doesn't make it hurt any less...

The Empty Stocking

So this weekend was full of taking down boxes from the attic, putting up Christmas lights and assembling the tree. I stayed away as much as I could. I know I need to be more helpful because Christmas decorations in this house are no small task, but the whole thing feels like a "What's Wrong With This Picture?" activity. I honestly thought we'd at least have one more Christmas, even given the hospital stays and the scan reports of doom. And so I'm just not ready to do this whole season without my father.

Our stockings are already hung on the mantel, including Dad's. We're not quite sure what to do with it. But it just epitomizes all that is wrong with feeling festive when the grand master of all festivities isn't here to take part.

Thanksgiving was hard enough but Christmas is going to wreck me.

Bad Medicine

One aspect of my father's illness that I haven't really delved into is the unethical, unprofessional, utterly appalling manner in which his own oncologist treated him. While I won't go into details about the hospital or doctor, let's just say that this particular locale has received awards for the cancer care it provides. So you'd think they'd have that whole "care" part down pat.

Alas that was not to be the case. The doctors at said hospital are obviously brilliant and know their sh*t when it comes to cancer, treatment options, clinical trials, etc. But there's something distinctly wrong with an oncologist who knows his patient is dying and rather than help the patient with end-of-life issues, provide supportive care and just be an all-around human being, he instead washes his hands of the situation. As soon as it became clear that my dad's cancer was one of the most aggressive types out there (this information came thanks to his very helpful radiation oncologist), "Dr. No-Good" distanced himself as much as possible from our family.

While Dad spent a good part of the month of August in the hospital for uncontrollable pain and nausea, this particular doctor was still cheerleading Dad along, telling him that he still had options and assuring us that when he felt it was time to discuss hospice, he would let us know. Meanwhile he's telling my mom in the hallway that Dad didn't have much time left and that he would more than likely be discharged into hospice. Why couldn't he tell Dad this? Apparently Dad "wasn't ready." Well pardon me, but isn't it part of the oncologist's job description to help make him ready?

It took Dad's palliative care nurse to sit us down and tell us that we were nearing the end of this journey and recommend that we say whatever needed to be said, and soon. Less than twelve hours later, he was in a coma. When the nurse called Dr. No-Good to tell him of this significant turn for the worse, his response was "Well, it's time we refrain from heroic measures." No sh*t.

I firmly believe that Dad hung on as long and as hard as he did because he truly wasn't ready. And I blame his doctor for that. Of course the prospect of facing one's own death has got to be terrifying - who is ever really ready? But had we had more time to grapple with it, had my father known what was about to happen, I know he would have done some things differently. As would have I.

When the dust settled and the relatives left town, our family sat down and penned a pretty damning letter to the hospital. We didn't mince words and we did name names. It must have gotten their attention, because a few days later, the CEO of the hospital called. He assured my mom that they were already making changes based on some of our observations. And then he told mom that someone would be calling to follow up.

And someone did. The Vice-President in charge of Quality Control, in fact. And we have a meeting with him Tuesday morning. Hell yes.

I know our anger had to be directed somewhere and I know Dad didn't like us criticizing the doctor he trusted with his life. But that's just it...he trusted this doctor and this doctor let him down. And as someone headed into the medical profession, I find it quite disturbing that an institution with multiple accolades for its cancer center is so messed up.

So I'll keep you posted how it goes. I do have to say I'm impressed with how quickly they have responded to our concerns. Hopefully what we contribute will help the next family suffer just a little bit less.

Facing terminal cancer is bad enough. You should at least be able to trust your doctor to help you deal with it.

Gobble Gobble

Yesterday we faced the task of making a Thanksgiving turkey without the master turkey maker. Yet another moment to realize exactly how much Dad did for us. It was an adventure and we actually ended up making a really yummy turkey but it was just not the same. These "firsts" without my father are really getting to me...

Nurse Teeny

I've been feverishly working on nursing school applications and just as feverishly seeking out HONEST insights about just what it is I am getting myself into. Lo and behold, there is an entire universe out there of blogs by student nurses and new grad nurses and veteran nurses. And I've come to two conclusions.

The first is, I am insane. But we all knew that. This is a thankless, exhausting, frustrating future into which I am about to embark. But for some masochistic reason, I am looking forward to it.

My second conclusion is that I should throw my hat (nursing cap?) into the ring and join the booming nurse blogosphere. Not for any particular reason. Just because maybe someday, someone else will Google "student nurse blog" and my insights will offer them encouragement. Or send them running for the hills. Either way, I feel that I might have something to contribute to the conversation.

It didn't seem appropriate to start such a blog in this context. This is my safe place, where I can offer more personal, sometimes raw, thoughts about the grief process and what it means to face cancer. My nursing tales belong elsewhere. So here's my new one: The Makings of A Nurse. Enjoy and feel free to pass along the link to anyone you know who may be considering a future in nursing. I promise I won't scare them - at least not intentionally.

A New Year

After a really emotional week where I almost reached my breaking point on several occasions, I was sitting at Panera studying this afternoon and one of my favorite songs came onto iTunes. I first heard it 15 years ago when my CTY partner-in-crime Stephanie sang it at a talent show. Then it appeared in the finale of the fantastic movie "A Thing Called Love". One of the verses goes something like this:

"There’s a full moon tonight
And I’m bathing in its light
Naked as the day that I was born
There is no shame beneath this sky
I have kissed the past goodbye
And mended up my broken heart so torn
With a sweet sound
Only I can make
And it gets stronger
With every breath I take
And it’s all a part of making me feel new
Makes me think maybe God’s a woman too
Makes me think maybe God’s a woman too."

I had been thinking about the past year and the hell it has been. But the simple fact is, it's not the last time I'm going to look back at a period of my life and think "Wow, that was awful." And I have a choice for how I deal with it.

So in a nutshell, I'm not looking at my birthday as an occasion for sadness. I'm looking at it as a New Year's Day and it's time to make a resolution. My father took care of this family and showed us how to take care of ourselves. So I need to do so. I'll allow myself days of sadness, I'll allow myself to wallow and of course I'll allow myself to cry. But the best way I know how to honor my Dad and the legacy he left is to be healthy. Rather than sink deeper into hopelessness, I can use my grieving more mindfully to consider how I live each day.

One step at a time. But soon I'll not only be as good as new, I'll be better.

Not Ready Yet

So my mom made an appointment for her, my sister and I to go for counseling with my Dad's friend and colleague who works with families of cancer patients. I opted not to go at the last minute. 'Probably shouldn't have done that and I'm not quite sure why I did. Just the more I thought about going to talk about it, the less I wanted to do so. Part of it is that I'm not quite ready to go there, especially at the tail-end of a very intense week. My brother reminded me that yesterday was the five-year anniversary of putting our beloved family dog to sleep. So we have my birthday, Halloween and Kenzie's death three days in a row. I think if someone asked me a question about how I'm doing today, I would scream. Or cry. Or both. Either way, I'm just not ready.

My greatest strength and my greatest weakness is my fierce independence. I take care of myself. That's what I do. But sometimes I don't know when it's time to ask someone to take care of me. "Help" does not seem to be in my vocabulary. But I'm not as strong as I make myself look. I've got issues too. :)

The other concern is that going to her feels a bit too close for comfort. If I'm going to counseling, I'd rather go to someone I don't know. I'd rather go to address all of my "things" (as Meredith Grey would put it). I don't think I could talk to her about the many layers that make up my grief, or about the many things I am grieving. I'm all for going to someone I know OF, whose reputation tells me that I will be helped, but I just don't know. I'd rather start fresh. There is a lot of ground to cover.