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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Wednesday, September 30, 2009

Today is day three post chemotherapy, and I am doing well enough to get sidelined by an article on msn.com about famous people's last words.
Check it out. I found it quite amusing http://spotlight.encarta.msn.com/Features/encnet_Features_Columns_default_article_LastWords.html?GT1=27004
I see myself as dying silently, quietly, kind of like I came.
That's just my guess.
I have managed to get X up, fed, and to school each morning before passing out for a nap from 9am to 1pm.
I have been listening to my body.
It has been saying sleep, and sleep a lot.
It is also saying, you liver is very unhappy. It's screaming at me actually. I'm going to see my chiropractor today, and if that doesn't alleviate my suffering, I'll get ahold of someone on my team to figure out why my l iver is torturing me. It breaks trough the extreme doses of morphine. It wakes me up and impairs my ability to breath.
I want to learn to love and live in harmony with this organ, but it's certainly acting up.
I'm happy that J brings X home after work so I can here their laughter as they play soccer outside or wrestle in the livingroom.
Now, X and I can connect as we see fit, as we're able since there is an adult in the house supervising.
In many ways, I am a child. I can think and reason like an adult, for the most part, but the fatigue is just too much.
I did ask my NP the otherday if anyone had ever considered prescribing low dose amphetamines for fatigue.
I was told yes, they prescribe ritalin, and it's not so uncommon.
I wanted to holler, "hey, what about me? Give a girl a break I'm tired."
But then she reminded me of the scary cycle of addiction that can be brought forth due to this addition.
I'll probably wait or save that option for special occasions.

Tuesday, September 29, 2009

I am doing, absolutely nothing today.
It's part of my therapeutic plan.
Chemo hit me with a bang at 12:30 this morning. That's the power of reactions. 
I was torm out of bed and sent to dance around the toilet for an hour. I've been hitting the ativan and sleeping ever since.
 I did gather myself to get x to school, my one responsibility during chemo weeks. He seems to feel secure with the care we worked out: I am with him in the am, after school his meme or I will pick him up if there is a problem a family member will pick him up. 
This was our huge alpha goal: we wanted x to feel safe and secure enough within our situation to learn at his age level. He has transitioned to school well. Sure, he tries to stay home, but what kid doeasn't. 
I'm relieved to know he is happy and feels loved where ever he is. He is finally being cared for by people we trust and can rely on. 
Thank goodness. 
Coaching his soccer doesn't hurt, even if it did drag me out of the house for a 9am game on saturday.
 He loves that the family comes out for his events and we're in charge. These were my favorite memories growing up, maybe they'll be his.

Monday, September 28, 2009

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Silly Girl Commercial

I’m going to make a reform commercial.

Linda knows what I love.

I am so down for this.

Little do you all know that I made my way through college with COMMUNICATIONS scholarships.

Yes, I edited the newspaper. I wrote. Writing was my first true love. I only joined nursing when I realized what journalism paid, and only then because I knew I could be an investigative health reporter.

I knew nurses were allowed in places that no journalist would ever be welcomed.

I also knew nurses were much loved and trusted in EVERY culture.

Imagine the information I could obtain!

Then life happened, I got side tracked, and now I am back!

I am doing my original dream, just not exactly how I dreamt it.

Commercials are really not my cup of tea, but in an attempt to join the tea partiers despite my disability, I am all in on this.

I’m thinking I’ll end it with “The status quo has got to go.”

I know I have clips that would be fabulous to use.

I could end the commercial with the clip of me running to throw up, because the system really does make me sick.

That is certainly memorable and funny.

Unfortunately, some clips are on my PC and my MAC has the editing software.

Hopefully it won’t be too hard to transfer videos, and I would love help editing.

I don’t think this is something I could do entirely myself if I want the creative vision realized.

I don’t know exactly what my creative vision is yet, probably something satirical.

We could start with a picture of the sick with a voice overtone stating the profits of our countries’ insurance companies (97 million for NH’s Anthem just last year).

Then we could have a patient say, “At the cost of me”

And another say, “And Me”

And another, “And me.”

After this I could come on camera with a wig, smiling. I’d take the wig off and say. . . . . something.

Haven’t gotten that far yet, but I like it.

Or we could be less serious.

I like the wig thing, because from past experiences I can tell you people stop and stare when I would where one then whip it off.

X’s favorite things was to grab my wig and tear it off in the grocery store to see people’s reactions.

I had to stop wearing it because he just couldn’t keep his hands off.

The shock was worse realizing I was bald this way than having my head hanging out or a scarf on.

So Who wants to help? Who has ideas? Let a girl know.

An Agoraphobe at the Pot Protest


An Agoraphobe at the Pot Protest

Being healthy enough to run around like a semi-normal twenty-seven year old (I don’t think, even under the best circumstances, I would be considered “normal”) it is pretty clear this whole experience has created an agorophobe in me.

An agorophobe is defined as a person with a phobia of containment or the inability to escape from situations.

In psyche 101 an example of an agoraphobe was someone who couldn’t stand being on the George Washington Bridge.

I call this person sane.

The GW is scary. If something happens at either end and you are on it, start calling your loved ones, you are screwed.

I guess I have always had an agoraphobe in me, making me have adverse reactions to bridges, boats, and relationships.

Now it has gotten out of hand.

The phobes that make the news are the severe cases, the ones who can not leave their homes due to the fear of everything.

I’m starting to fear everything.

It is because everything is a threat.

I swear if there is 1000 sq/ft of open space some person will walk within 2 ft of me, sneeze/sniffle/cough in my ear just about sending me jumping out of my skin.

I’m going to start heading out in a mask or just not heading out at all.

It’s not just fear of illness either, it’s fear of other’s inconsiderate behavior, like the woman at the orchard smoking under the tent.

All I wanted to do was take X apple picking.

Nope, can’t do that without some woman lighting up sitting within five feet of me under a canvas tent.

Being as tactful as I am (and having taken my marinol and morphine to go out) I started talking about her misbehavior loudly as if she had deliberately lit the cigarette to facilitate my lungs failing.

Those drugs really cloud my judgement.

She did put out her cig.

I think she would have remembered the event more clearly if my lungs had actually started to fail and I ended up gasping for breath at her feet.

That would be a deterrent.

Speaking of smoking and marinol, there have been pot protest in Keene, home of NH’s serious state school, Keene State College.

Every day at 4:20 pm a group has been smoking it up on the green to prove the police will not arrest large quantities of peaceful pot smokers.

The number of town tokers are growing, and no jibba smoking arrests have been made.

Really, I agree, arresting people for small, personal quantities of marijuana is a useless waste of resources.

I haven’t voiced my opinion in the decriminalization debate because I didn’t want to detract from the more important message I hope to send regarding healthcare reform.

My opinion is this: decriminalize it in small quantities. Treat it like alcohol and only make arrests if it is being abused.

There is a reason people hear about cancer patients screaming and hollering about how marijuana made them feel so much better.

It’s because it does.

However, if you are truly in a position where you are sick enough to require THC, it will be prescribed.

That’s all I am saying.

Sunday, September 27, 2009

I have been thinking, and I'm thinking, I'm going to be taking weekends off.
This doesn't necessarily fit in with my "fight" schedule unless I am laying sick in bed.
This is good news, because I am on the move, dragging my self out of bed, out of the house, on weekends.
I heard I can be sick anywhere. . . . .

Friday, September 25, 2009

I'm being out blogged.


I am being out blogged. . . . .

By a thirteen year old!

Not that this is a competition,

But she is just so damn cute.

Now I’m going to promote her,

It’s Tavi ie thenewgirlintown.blogspot.com

I have to say our niches are far different

Hers is haute couture fashion

And mine is . . . well. . . less fantasy more slap you in the face with the reality of life

But I can still think she is cute.

At least, I know, that I have WAY BETTER friends.

Thanks to everyone who has helped feed me, clean me, drag me out of my hovel during these past couple weeks that I let my depression win out and decided that my fight with cancer was really OVER and nobody had admitted it to me yet.

I am doing better now.

I won't even pretend that I have been able to even cope a little bit with my disease without the huge support system I have.

I do know that despite some very terrible health problems, I am a very lucky girl. Just look to the right. Thanks ladies.

I find it helpful to look at where I have improved from at my lowest point.

My lowest point during my pneumonia I could barely roll over.

I laid quietly, immobile, just trying to make the pain going away and keep my breath.

I am better.

Now, I am going to start denying that terrible day ever happened.

I’m going to focus on the fun I did have, what I can do.

I can contribute significantly to Xander’s life despite my illness. I still help coach soccer. I still taught him to tie his shoes. I still cooked him blueberry cure all muffins.

I can still write, even though I am just barely getting back to the point where I want to.

I was seriously depressed.

That means I enjoyed NOTHING.

It’s called anhedonia for all you who want to know big vocab words to sound smart.

It is hard not to be depressed when you have a line protruding from your chest, hurting, reminding you at every turn, “You are sick. You have cancer. You need a hard core broad spectrum anti-biotic or you’ll die. And, oh yeah, we’re going to put this line in the most uncomfortable inconvenient spot ever, your son’s snuggle spot. Every time he goes to rest his head on your chest you’ll jump in pain. NO SNUGGLING FOR YOU!”

Thank goodness that is gone. The port is intenal now. I am going to learn to love it.

We’re going to have one serious, loving, long term relationship.

But I can live and express myself through my writing. I can still hope to make this process easier for others in the future.

I can engage in the political debate and rhetoric regarding health care reform.

There are a lot of “I Cans” here.

I think I’ll be okay.

I’m so lucky to have friends who saw the writing on the wall and refused to stop calling, coming by, or bringing food.

You are all incredibly special, even if you're not in the pictures, you know I love you. You're my inspiration for getting through.

You reminded me the world is great and that it’s worth living in.



I am at x's soccer practice, and this time I can actually breathe.
 YES!! 
I decided with the addition of coumadin to me regimen and some clear concrete evidence that I have a neuropathy (ie my eyes deteriorating without my feeling a thing) I shouldn't play soccer in my bare feet. 
I guess I can learn to live with this. Some people go through their whole lives without running around in their barefeet like a dirty hippie.
 To those people: go out and try it, now, but not if you're in the bronx. I don't want u taking my suggestions and getting hepatitis or the hiv. 
I have actually had my neuropathy for years now since my very first chemo regimen.
Ahhh, what memories. . .  I decided to look on the brightside and wear my stilettos painfree, but not feeling a rotting cornea is taking it to a new level. 
Neuropathy can cause such numbess that nothing is felt. I heard a story where one man's dog nibbled off his toes and he didn't even notice. True story. Not urban legend at all.

 anxiety and illness in the house has finally gotten to x. He had a breakdown at school when people defied him as line leader. He is flat out refusing to read, which jon now tells me is what he did as a child.
 Sweet. I'm now in charge of making phonics fun. We made math fun, could reading be so hard? It's time to enact covert learning, teaching when he is least suspecting. 
I find this method hugely effective. While doing an activity I occupy his mind with a secondary focus of learning, like plating "horse" in basketball. He can learn to spell while we take shots. The teacher is sending home nursery rhymes. I think I learned best when my mind was allowed to float between tasks and subjects, accessing different portions of the brain. I think this is what helped with my recall, I was learning amidst multiple stimuli thus I could engage the info in more situations. 
It is said that the most learning occurs in the firast and last ten minutyes of teaching, so this erases those time boundaries allowing for lessons to be absorbed equally. 
Sesame st actually employed a theory kind of like this to get kids to learn from their show. If only education had the money big media does to research crazy info like fovea movements.

Update From Dad

Hi to all

Good News Hillary is home and Cancer free!! The chemo works on the cancer as quickly as the cancer grows. She will continue with chemo treatment for a while to keep it under control. We are headed for a T-cell infusion which is a way of saying another dose of our mystery donors bone marrow or cells. Hillary's pneumonia is clearing up in her lungs and is able to get around much better this week. She did go to Boston to an eye specialist yesterday. She is losing the nerve endings in 1 eye. She was not expecting bad news like that. She could not feel it happening because they were not transmitting anything. I don't understand what is happening but if had this much chemo I would be glowing and could set up my own electrical nuclear power plant.

The roller coaster is on another cycle. We don't know which roll or turn will be next. It's been hard to stay positive. I think we are all struggling. I have not seen that contagious Hillary smile in 3-4 weeks. She is able to feel good with the right combination of M&M's.!! Morphine and Marajnol!! 1 make the pain go away and the other gives her the munchies!! Luckily we are getting enough good news to keep us a float. Hillary still has lots of plans but not enough energy. Her program " patience as Partners" is being prepared to be applied for a Grant. The state has endorsed her plan as the best to use in New Hampshire for the stimulus money to improve the administration of the health care system. The minimum grant is 4 million dollars!!! She is right there at her pinnacle for what she wants to accomplish but not enough energy to get over the hump. I have been trying to help but it would take more time than i have. It should be it's own business!!

Thanks for your prayers and thoughts
Vic, Nancy, Patrick & Grace, Allen, Pierce, ( Preston soon) Heather, Jon, Xander and especially Hillary

Wednesday, September 23, 2009

making a comeback

The good days are so much better after you have reached down into the depths of some seriously bad days.  . I am giving myself a break, and I bet this will get a sigh of relief, everybody else is getting a break too. . I am finally understanding most people don't think like me. I'm hardpressed to find anybody who thinks like me.   Thank goodness. There are all ready two of me (twin sis heather) but duplicating my brain is not something life could handle. Apparently, not everybody can just whip up postings in ten minutes and find appropriate pics to accompany them. Not everyvody's mind runs like COTIS, a grabd data base cross referencing and calculating outcomes based on experiences. Nope, only my mind works like that. Thank goodness it is working again.     My anhedonia is improving, hence the pictures I am taking again. I am having cold sweats and chills but I think its from the flu shot. . Get those flu shots people and eat lots of quercitin containing foods (blueberries, apples). An apple a day keeps the doc away(if you're a normal healthy person). . If you want to cheat like me quercitin c is a supplement to assist your immune system in fighting viruses and flus is available online. I am off with hubby to bean town to see Dr.Dana, gvhd eye guru estrodionaire. I hope to have my second duct plugged which will hopefully ease the residual dryness that results in a nasty, filmy grime across my eye, makng it impossible to see. Then, if ignored, the filmy grime dries giving me eye snots. On the brightside, it's getting fixed!! The severe photophobia and pain that began the gvh is controlled. My eyes are hardly an issue with my oasys contacts, systaine eyedrops, my restasis, and flax seed oil. This all works, but my eyes are going to be perfect!

Tuesday, September 22, 2009

AAhhhhhhhh. . . .


My first day sans sickness & having my mediport de-accessed I was able to get up, go to my closet, and put on a t-shirt.

It was that simple.

I didn’t have to stare blankley at all my clothes, searching for “port friendly” shirts, weighing the option whether I should show it off or hide it.

I was initially hiding the port, but unfortunately, X would forget it was there.

The right side, my port side, is his snuggle side.

You don’t realize how often something lays across your chest until it can’t.

Seatbelts, for example, are a big pain in the ass.

I did hear a rumor that a seatbelt cushion exists for just this problem.

I’ll have to find it to show it to everybody.

Maybe somebody else knows?

I can also focus on some much needed organization.

Someday, sometime, somewhere somebody is going to make a mint organizing homes in preparation for disability, such as chemo, radiation, surgery.

When illness hits, the smallest tasks become monumental.

Life is not simply a fight because you feel terrible, it’s a fight because everything is now an obstacle that needs to be relearned in accordance with your new personal limitations.

For example: taking a shower, which for me is often a way to destress and relax becomes difficult. I can't just hope in the shower and go. I have to sit, tape up my port, then get in.

Showers also come after I take my medications, which take at least 15 minutes to go through.

To make matters worse, the chemo severely interferes with my ability to organize.

In general, I think “chemo brain” has severely attacked my organizational behavior.

What’s fabulous is I have a break, and I can now sketch out the ideal organizational tools for my project idea.

I NEED my ability to organize, because Who would know what a patient needs better than a patient?

I have to say, I’m excited and loving it. It’s a feeling I haven’t felt in a while.

Monday, September 21, 2009

Hallelujah!

Hallelujah!!

I’ve been granted a reprieve.

No chemo for me this week!!

I really am beginning to feel like my cancer & treatment are one big ball and chain. The bracelette that gets slapped on, that's my handcuff or the patient equivalent of a "hospital arrest" tracker.

Take your pick.

My cancer is in remission.

It is not a necessity to administer the chemotherapy right now.

My cancer is not causing my imminent danger.

Complaints like my lungs and the inability to breathe were.

I don’t know if I could have emotionally gone through being sick another couple of weeks.

I think I would have forgotten what it was like to be healthy.

When I forget what this is like, I forget what I’m fighting for.

What’s a woman to do confronted with SEVEN FULL DAYS of health?

I got a flu shot, got a prescription filled, and went to lunch with my official Monday chemo buddy, Steph, my cousin.

That was until Steph felt nauseas and we had to leave.

I have to say, I enjoyed being able to cater to somebody else when they weren’t feeling well.

My plan for my twenties, my career, was to cater to others and ease their suffering.

It’s a big slap in the face to have the tables flipped on you.

It’s a sick joke for destiny to say, “ah-ha, you get to be the one taken care of.”

One may think that after 3.5 years of illness this feeling would go away.

It never really does.

There are constant mourning for losses with each treatment, remission, and relapse.

Thank goodness, I have finally vented.

I got whatever terrible depression that has been plaguing me off my chest.

Let’s pray it doesn’t come back.

I have experienced bouts of depression before where I would sit, cry, and wonder what would happen to me and my family.

I would wonder how I cam to be in such a bad situation.

This kind of emotional catastrophe happens at least once per treatment.

Sorry to be the one to admit it.

I hope people can understand feelings of loss, hopelessness, and anhedonia (not enjoying ANYTHING) are common in cancer cases, almost expected.

If you are in a situation like mine and you do not have occasional freak-outs, you’re just not getting the entire picture. You're not paying attention

Now, I picked up the kitchen and thrown in a load of laundry. I put away the groceries J brought home and am currently cooking dinner!

FYI- if I can cook dinner I am doing okay.

Learning to Live



I am actually up, okay and moving..... FINALLY.

It has taken so long to get to a place where I can actually function for any significant amount of time.

And tomorrow I have to go back to get more chemotherapy.

Talk about one bad Monday for me. Can I hear a collective "BOOOOOO!"

All of you who thought you were going to have a bad day, maybe you could compare it to mine and not feel so bad?

But then, some of you may be experiencing worse.

With the chemo I am really wondering, Is this really how this is supposed to be?

Do I Get three days of enjoyment out of three weeks?

Is this a side effect of the chemo, the cancer, or the pathological process in my lungs? And why, exactly, are getting these questions answered so damn difficult?

You would think I was asking to predict where I was going to be in 2012 when the stars of leo aligned over the horizon.

All I would like to know is am I supposed to be suffering this much, how long the suffering needs to go on, and what the next step would be.

Am I getting what I signed up for? I don't even know.

Really, I’m a planner being in a planless limbo is no place for a type A control freak to be. It’s anxiety produciding, it’s stressful, it’s tiring.

Really, I’d just like an honest candid response as to whether all the intervention I am seeking is worthwhile or should I just try to keep myself as comfortable as possible for as long as possible and enjoy the time I have.

Obviously, this is a terrible conversation for anybody to have.

I don’t want to have it, but it needs to be done and facilitated properly.

These conversations were really the worst when I was working, and often as I am sure so many have heard, the shit flows down hill.

Yes, I have sat in front of patients and family members and told them they had terrible cancers with very bad prognosis or horrible acute illnesses that nobody ever could have foreseen that makes the outlook pretty bleek.

I’d sit down and have these conversations despite the presence of more mature, educated individuals that I’m sure the patients would have rather heard the news from.

Let’s be honest, if you are having a conversation regarding life and death, do you really want to have it with a young woman that looks fourteen?

I know in the back of their minds they were thinking, how old is this chick? Does she really know what she is talking about? It’s 7pm, shouldn’t she be in bed, getting ready for high school and not sending my loved one off with a hundred different lines in a helicopter?

This shouldn’t be crossing peoples minds at a time like that.

It all goes back to costs vs. quality of care received.

For the cost of inpatient intensive care status, every patient should have the right to sit down and have any news delivered by an MD.

It just doesn’t happen so much.

So guess what the conversation is that I will be having tomorrow?

Yes, I’d like to know how long I can hang out at home with my family and friends even with the misery of hospital stays and runs to the clinic a couple times a week for problems like my mediport (which should no longer be a problem. I decided to take the risk of Coumadin despite the all ready enhanced danger of bleeding) and lung issues.

I could be calling every other day, but I always have to weigh my options of whether my energy expenditure is worth the intervention.

For example, Friday my BP was 80/50 when the VNA came by.

I certainly could have called the clinic asking for fluids to perk up my blood pressure, but then at the very least I would have to be at the clinic all day getting fluids, not getting rest.

That would certainly cancel my great anniversary plans.

Then, I could always be candid, and say that I’m not drinking because I have sores in my mouth trekking down my throat, in which case I could be screwed with an ADMISSION and there goes my Mother F***ing plans for the weekend.

So instead of intervening at 80/50, which is a bp I’m okay with but no one else seems to be, I went to sleep.

In psyche world, if you can fall asleep easily, you’re okay with dying.

I guess I am okay, because I like my sleep.

Good news is, the gasping for breath at night or choking that has kept poor J up for weeks now stopped last night.

I was probably desating from the inflammation in my lungs.

This may have been why I was such an exhausted miserable mess. No person should ever have their great levels of oxygen messed with.

Lack of oxygen to the brain results in craziness.

Thank goodness that’s better.

So sleeping instead of intervention, I was actually able to have fun.

I am finally getting back into the mode and mindset that, if I am going to be sick, I can be sick anywhere.

This includes bridal showers, bachelorette parties, birthday parties, Sunday dinners, game nights.

I started dragging myself out again last weekend to try to enjoy some semblance of normalcy.

Usually my tried and true, "fake it until you make it" theory works, but not so much with the strength of such a terrible pathological process like chemotherapy and it's side effects.

I don't even have cancer anymore.

What is driving me crazy. What really is pissing me off, is that this relapse in health has come at the worst possible time.

I want to work on Patients As Partners, give interviews, write and research alongside having fun on my weekends.

Maybe this isn't realistic? I would really appreciate a candid response to what I can expect, but maybe, unfortunately, the answer is what I have found so many times before, that no answer really exists. It's based on the individual. Blah, blah, blah, blah, blah.

I did go out Friday for a nice meal and Christmas shopping. I went to Keene for Nikki D's bridal shower, and went to Wellwod's for some apple picking.

I did manage to have a great weekend, despite the severe depressive lows I have been having where I struggle between intervening or not.

Having to make that decision once or twice is fine, but having to make the decision over and over again is getting exhausting. It's also making me feel burdensome.

I have Steph as my personal "beckon call girl" on Monday's now so I can count on a fun chemo buddy to keep my head right.

We're still coaching soccer and practice is scheduled for Thursday with games this weekend.

The goal for this round: learning to live within my limitations.

Friday, September 18, 2009

Happy Anniversary


Believe it or not, my beau and I have been official for a full five years today (that's married, folks).
What to do to celebrate such a milestone?
Years back I was promised a romantic getaway, but for some reason, those plans have been pushed back indefinitely (tenth, maybe).
Five years would have been flowers had I not been a buzz kill and reminded J yesterday that I hate flowers and would much rather take the cash and run.
We'll be going out to dinner, I'll be dressing up, with make-up (my healthy face) upon request, and yes, after almost ten years together he got up the courage to ask for his present in advance.
And just because he's doing the best he can, I maybe he'll get it.

Feeling Normal

Thursday, September 17, 2009

Life is good


ANNOUNCEMENT: The Winner of the raffle steve giamarino from scs group

Life is good. Good. Good. Good.

I have good news, very good news.

All those complaints, the raging four page long Hillary fit that probably should have been kept for my book: cancer it.

The solution to our system’s illness and our frustrations, the black holes, the miscommunication between providers, departments, and hospitals may soon be cured.

The Chief Information officer of the Department of Health in NH has stated he will guide Patients As Partners through the political process for me!

I am also in talks with the American Cancer Society to get the national office to pledge their support as well.

I think this collaboration between the dept. of Health and a 501(C) like the ACS is a match made in heaven.

I would get to oversee the process as I am able and a representative of mine will be present to see this to its fruition!

Hooray. This is something to celebrate.

Maybe all the terrible things I have gone through, all the waiting, scared, trying to be found when I was lost, maybe it will be all worth it.

I’m fine with taking one for the team as long as some significant changes can be made so no one ever has to suffer the fear and pain I have.

YAY!

For those of you who have had a problem conceptualizing my vision, I’ll tell you the objectives that it meets as outlined by The Citizens Health Initiative:

PAP will be private and secure (well, as much as it can be since Fed Chairman Bernake’s Financial Information got hacked and stolen, how safe are any of us really? But it’ll try)

It will promote quality, safety, and efficiency

It will be electronic for medical providers to record, store, and access patient information.

It will be patient accessible and portable.

It will support the equitable access to healthcare.

There is a big, long strategic plan that we don’t need to talk about now because I’m too busy being excited.

Best of all, not stated in the objectives: it is self sustainable through advertisements.

Theoretically, it can lower health care costs through transparency and never have a taxpayer dollar other than stimulus money attached.

Holler. High Fives All Around. I have no problems today. All my suffering may not be in vain.

sick of it

Last year, activists went to Anthem's NH headquarters to share their personal experiences with increasing costs and decreasing coverage. They also asked the Director of Community Relations questions about claims denials and profits, including "How many claims did Anthem deny in NH to make a $98 million profit in 2007?" They promised answers within a week - a year later, we're still waiting.On Tuesday, we're going back. Not only do we want answers to the questions we asked twelve months ago, but we're going to demand they stop denying care and stop funneling money into defeating health care reform. Join us on Tuesday, September 22nd from 7:30 - 9 a.m. at Anthem's headquarters in Manchester for a rally and press conference to tell Big Insurance that we're sick of it

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.

FOUR CALLS!!

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.

Wednesday, September 16, 2009

I am beautiful. . .


On the inside.

Yeah, I said it.

My insides look good thanks to a PET scan taken last Friday.

It looks like the tumors have dissipated since the start of my chemotherapy regimen.

For all of you who would have liked to see the visually, the actually scan pictures, and are extremely disappointed I don't have them, feel free to direct your rage to my perfectionist hematologist who refuses to show the scans.

I think showing in imperfect scan, in his world, is like passing in incomplete work, so I just let it go, even though it would be so much cooler to show!

The good thing about my cancer is that, though it comes on quickly, aggressively, and mutates to be resistant to treatment, it goes away very quickly with a new chemotherapy.

The fact that I am cancerless is great news.

It’s great news I have heard before.

It’s great news that is followed by the fact I need more treatment.

I can’t just stop and say “hey, fabulous, good bye cancer. What we did worked!”

No, no, no, not that simple, because due to my history, it is pretty clear it has only worked for now.

Eventually, the tumors will likely come back.

Sorry to be a buzz kill, but I am at an impasse

This occurs everytime I am declared “clean” or “in remission.”

Everybody celebrates. They think it’s the end of my battle.

It is the end of a battle, but I still haven’t won the war.

People start thinking Life is good and I can start recovering to be what I have been wanting to be and do what I have been wanting to do.

Not the case with me.

Not even a little bit.

The chemotherapy y is working (HOORAY!!). That means I could stay on it for another 2 or 3 months and be relatively miserable from all the side effects, comfortable AT HOME.

The other option is I could use one more round (or month) of treatment and pray the spot in my lung has gone away.

No, I haven’t mentioned the spot.

The damn spot that needs to get out, that has caused me so many problems.

It is the spot that was originally thought to be pneumonia or just inflammation. Who knew really? It was up in the air and for grabs by all my diagnosticians.

Turns out, it is probably inflammation. This is probably the worst option, since the problem it is most similar to caused complete respiratory failure and for all my family and friends to be called in to say their last good byes.

Yes, I have a spot like THAT lurking in my lung, causing me shortness of breath.

GGGRRREEEEAAAAATTTT.

And people wonder why I kick and scream, turning into an outright bitch when I can’t reach a professional to ease my pain or improve my ability to breath.

If it’s inflammation than I’ll fight inflammation.

I’ll chug some berberis and eat pastas and rices with all my favorite anti-inflammatory herbs since even a small dose of motrin is off the table now that my platelets were low yesterday (36) and I’ve started taking Coumadin, just for a short time, while the kinks (hehe, that’s a dork joke) in my line get worked out.

Hopefully this should fend off any clotting disasters that drag me all over kingdom come for treatment.

Ironically, the Coumadin is set to start working about 26 hours after I start it, just in time to no longer need my medi-port for vancon infusion.

My goal for the week is to learn to love my mediport.

It’s a part of me know. We’re going to have a long, fabulous relationship.

I certainly have never had a patient whose mediport was screwed up so badly that she was left oozing blood from the simple surgery for days until a nurse finally threw a hissy fit.

It was to late for poor patient though, she died from a hospital acquired infection due to the frequent dressing changes to control bleeding from her port site.

I have to forget all those people and patients from the past.

Is it any wonder I’m scared to death.

Ignorance is bliss. I like to pretend I’m ignorant.

Specifically, I’m going to train myself to be submissive to my care team. They are perfect. They are perfect. They are perfect. Maybe if I repeat it enough I won’t know what I do. . . .

All this PET means, is that I still have options (hey, I’ll take it!) and the options are to stay on this treatment for a while to enjoy my time with my family or rush to a donor lymphocyte infusion, which I don’t know much about.

What I do know is that it requires trips to Boston and I will be under Dana Farber’s loving care when I enter into this territory.

I am on a bit of a timeline, X wants treatments done by Christmas. He’s been asking God and Santa, the universe’s two biggest authorities to a six year old.

One more treatment cycle would put me mid October, two more would put me mid-November. If I take the latter I’ll be in active treatment around Christmas time.

If I take the former then I’ll be easing up around Christmas, but I run the risk that if DLI doesn’t work I may have one month less with my family.

That certainly makes decision making complicated.

What I have decided is, as much as I want to proceed with my big ideas on how to save the world and health care reform, I probably won’t.

I have been looking for a 501(C) to hand the idea off to or anybody who would like to administrate it other than me.

I just don’t have the energy to put the TLC into a venture like this.

I have my favorite venture sitting right next to me playing DS and decompressing after school.

I don’t need anymore stress. I don’t want to be dragged in another direction. I'm going to hang out, write my postings and my books (yes, I said it, you didn't think I was giving up all the goods did you?)

With this being said, I’m more likely to move to DLI mid-October.

This may have treatment relatively over by Christmas for Xander’s wish.

I do think God is listening to us, always, watching us. We will always have what we need to survive. It will be provided if I continue to follow my heart and the directions of my dreams.

Thank you so much to those of you who help us.

Keep praying for our Christmas miracle.