Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Thursday, September 17, 2009

It's not personal. . . . .

This is my rant from the patient side of the healthcare problem. Unfortunately, the patient side is very rarely heard and in a time where there is hope that things will change it is so important the truth be told.

I am a princess in the healthcare system.

I know this.

I am blessed.

I’m blessed that if I can’t take the proper route using my established specialists that I always have a safety net.

I can always land back on my PCP’s exam table, crying about how I need care, I know what I need, but nobody has time to care for me.

I could always do this. This is the perk of having well educated friends who love you.

And I want to use this short cut, the easy way, cut corners to expedite my treatment, time and time and time again, but I don’t.

I don’t because having people who will do personal favors for me is not going to allow me to see the severe short comings that need to be remedied within healthcare.

I’m learning, studying, through all of my trials.

We’ve all heard the adage, “The Truth will set you free, but first it will piss you off.”

I’ve been holding my tongue regarding treatment black holes and problems within hospitals, especially regarding the moments when I call seeking care due to a problem I think may land me in the hospital, that may kill me, or that is making me suffer miserably only to be passed off and over like “hot patient.”

THEN, eventually, I land on a provider that is comfortable telling me there is nothing they are going to do for me.

This conversation is never very pleasant.

Actually, it could be down right nasty.

I’m told I am not their problem, not their patient, they don’t really care who else is taking care of me.

And I’m not being dramatic; the very assumption that this would be a dramatic hissy fit is insulting.

And of course, don’t you all know all ready that I am in possession of some serious technology? I have all sorts of pictures, tapings, and videos. I don’t say things without witnesses and evidence.

That would be silly. I’d just be a complainer.

“This may be recorded for quality assurance,” does not go one way anymore.

A lot of the assumptions regarding how I fight to get my care down right undermine my intelligence, and it does hurt that I am considered a bitch for advocating for what I need.

I’m human. I’m not impervious to the judgments of others, but my will to live trumps what a relative stranger feels about my coping

So on with the stories. As one of my favorite students once said, “let them hang for their sins.”

It’s time.

I have spent more time in tears of frustration these past couple weeks than I ever have in my life.

It has all been over acclimating back to Dartmouth from Dana Farber.

Transitions between hospitals are scary, down right stare death in the eye and pray for your life scary.

I have kept my mouth shut because I didn't want to offend anyone.

I kept trying to jump through healthcare hoops with providers myself.

When something erroneous would happen would happen, I would politely say "it's a system error" or "oh, this really needs a refined communication processes."

Well now those nice polite days are over.

I have kept my personal health care stories relatively down low, only for politicians to hear, but after having been "lost" between Dartmouth and Dana Farber for 4 weeks last year, the severe anxiety over not having my health needs met due to inconsistencies started.

Yes, I was a “lost patient” for four weeks. Lucky me, I had a friend who could call in a favor.

He was able to "find" me in the murky waters of health care communication muck.

The day after he called, I received four separate phone calls apologizing profusely.


Zero calls for four weeks, then four calls in one day.

Where were these people before my friend's intervention?

I’ll tell you where they were, treating me like an idiot or like some whiny little patient that just doesn't "get it," treating me like I’m a hypochondriac psychotic cancer patient that doesn’t realize the world does not revolve around her.

Ouch, I understood the undertones of how I was spoken to in those four weeks I was trying to be found: I was an idiot. I was a burden. How is that to chip away at someone’s will to live? And how was I going to stand up and complain possibly risking that I may not be “liked” and receive no treatment.

Four weeks for me to wait for my hodgkin’s probably did not affect the treatment outcome.

Four weeks for a person with small cell carcinoma will kill them.

They would die begging to be "found" and treated like an idiot trying to access care.

Feel free to comment and let me know how many of you have a personal friend that could come to your aid and rescue you from being lost in transition between providers?

How many people have that luxury?

If you don’t, who knows how long you would be lost.

I have finally had it after full years of fighting to receive quality treatments by specialized individuals that I know exist!

And I have insurance to boot!

I will pay for their time, but no, even that could not get one of the clinics to pick from one of four emails and an e-fax sent by a hospital on my behalf with up to date health information and put it in a chart.

Where did the prized, holy grail, super secret med info go?

It went in the trash, all five pages.

Talk about wastefulness and inefficient practices.

I spent months seeking urgent treatment from this clinic, only to be informed by my contact care team that they, “just didn’t have my up-to-date information” or “they knew nothing about me.”

Well, surprise, I knew they did know something about me. I knew that they were receiving up-to-date information over and over again.

After discovering that one of those five documents (four emails and an e-fax) needed to be treated as "official" my problems were solved.

As I told this story to the Chief Information Officer of the New Hampshire Department of health, he sat on the edge of his seat waiting to hear the big genius, technological solution that we had come up with to remedy this problem.

The solution: put one of the pieces of paper in my medical records.

That move was what all the geniuses overlooked. It wasn’t even as complicated as making a file on the main hard drive with names and ss# where my electronic health information could be forwarded to and stored (which all the youngins' get is sooooo easy).

It’s also, almost, too easy.

Solving healthcare is being over thought. Some things need to be brought back to the basics using only the most simple and user friendly of software.

Are these examples not scary enough for you? If you were in my shoes, would you be sufficiently scarred to death that you will need treatment for an ailment that will slowly kill you and you won’t be able to access it?

Do you want more?

I have more.

Before the big light bulb went off that my medical records from another hospital needed to treated as official medical records, I had a paraflu that waited 24 hours to be treated due to inaccessible care which turned into a pneumonia resistant to oral antibiotics.

Yes, I called on a Monday complaining of a hundred different problems under the sun that were plaguing me.

I had just stopped my prograf on Thursday. Graft vs. host was rearing its ugly head.

I woke up eyes gritty and blind from photobia.

I called for help only to be told I couldn’t be treated locally. It probably wasn’t GVHD and to call my PCP.

Ummmm, no.

It was GVH. I needed to be seen by someone familiar with cancer whom would know to order a nasal washing and fluids.

Unfortunately, I couldn’t get to those people for 24 hours. I was unable to rely on the people I thought I could rely one.

I think we were both a little confused about what roles each of us would play.

This is a severe communication error, and unfortunately, it was a communication error that allowed a bacterial process to take hold.

When I received treatment on Tuesday my temperature was 103.

The fluids and oral antibiotics were useless by then.

I ended up in the emergency department of the very same hospital that weekend with a fever over 103 and a pneumonia I thought may kill me.

It took six full weeks to recover.

That may have been prevented with some simple palliative interventions early.

We’ll never know.

I do have to say, when my problem proliferates to the point that I am actively circling the drain gasping for breath I get great care quickly and inefficiently.

Unfortunately I would really prefer NOT to what until I am half dead to then be saved.

I would like to prevent 6 weeks of recovery.

I would like to spend my weekend at home. I would like not to spend $1300 a night for a hospital room and care.

That’s just me. Silly me.

To review this problem on a micro level let's use my personal (and I mean personal) favorite example.

I was emergently sent to MRI to look for an intracranial bleed only to be stuck, alone, in the waiting room for 45min prior to the testing. I laid alone, half conscious, in and out of a narcotic induced coma without any medical supervision.

An intracranial bleed is serious, in anyone.

I guess, in their defense, maybe they assumed if I had an Intracranial bleed I was a goner and should just peacefully sleep in the hallway through my death?

These stories are terrible, horrible, and downright scary, but the implications on the psychological being of the patients makes it far worse than the simple actions.

The only time I ever want to die is when I am screaming and crying, begging for care, trying to live when I really feel my symptoms could kill me only to be treated like someone hysterical, useless, dumbass paranoid patient who had no idea how the world worked and no right to the care.

The message received on my end from these battles are clear: you’re taking up to much of our time, You’re draining the system, There is nothing that can be done for you, you are a burden.

I internalize these messages. I’m tied. I’m sick. I know if I just listen to my body maybe I could die in peace, never having to deal with the system that I loved but has turned into a personal sector of hell again.

I know some people may become defensive regarding what I am saying, and as when most people become defensive, point the finger back at me, saying I am asking too much, I am demanding, I am inappropriate, and the world does not circle around me.

How far this misses the mark. It’s not even about me.

If it were about me, I would be calling and skipping steps. Taking the easy way of treatment through my friends and the avenues I can navigate on my own, but not everybody is so lucky.

Not everybody has these friends.

The best I can do is suffer because I have a platform to expose these travesties that plague us.

I don't want to die. Lying in pain, suffering I have never wished to die.

I want to fight, but I don’t want to fight cancer, the hospital, the insurance co, and big business to keep my insurance.

When I think "I can't take this anymore" it’s when I’ve been put on hold and sent through four different people only to be told that my problem is not the problem I think it is.

I think "I can't take the waiting, phone calls, referrals sometimes that result in me scared and crying with out right gentle refusal for treatment. I always leave feeling useless, hopeless and lost thinking if no one wants to care for me, I don't want to be a burden. I want to die.”

I am useless. I can no longer contribute anything. My providers have made it very clear that there is just not enough time or the capacity to fix me. If I want care, I’ll have to do it myself, and it makes me waver on my resolve to live.

What makes this scarier?

This is the princess treatment. I do think I am getting the very best each individual can give, but it’s time to conclude that our individual efforts are not good enough, no few single person or small group of people are going to resolve this huge problem of accessing care, no matter how much we care as individuals.

The problems are just so much bigger than us.


Anonymous said...

Wow, this is the best rant I've heard in years - put it in the book any way

Valerie said...

The "Reassuring Lie" cartoon had me rolling... SO TRUE!!!