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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Monday, August 31, 2009

Easy Peasy

Easy peasy nice and easy is one of x and my favorite sayings. He really gets into the rhyming thing.   That's how today has gone, easy peasy.  . Luck is on my side today. Every appointment is flowing nicely one to the next.  I do have to give dhmc credit, they can coordinate. I love it. This is a big compliment in healthcare world. I saw g at 10am only to be sent for a chest xray. I've been having shortness of breath and pain with breathing. These symptoms buy an xray, but I think it's my normal seasonal reaction. I do this every year. There was no pneumonia seen on my xray. Thank goodness.    Just as I was getting the results Marie's intake nurse snagged me and brought me to her office.   Marie is one of my new favorite providers, obviously, she is in palliative care and writes the scripts for my pain control. She is now the guru in charge of helping me maintain my quality of life whether it be through pain control, managing finances or family matters.    I am breathing a big sigh of relief having her.     Every patient needs a person aware of the entire picture on their health team. Due to boundary issues, that person can not really be an attending. I'll have to snap another picture of G for the masses though, if he let's me. He's a cutie. I'm sure most of his patients wouldn't mind having him up in their lives.    That can't happen. A person's body is so multi-faceted even when healthy a disease like cancer throws a huge wrench in the basic maintenance of homeostasis. A doctor needs to focus on the physical domain. This is not to say that clear, effective methods of communication aren't needed. I did ask for a nice streamlined way to communicate with either him or his NP. His idea: wait until appointment times. . My response: no. I have symptoms act up every other day. I need to get ahold of someone.    . I got nowhere with this.  I think I'm going to become great friends with dianne, the receptionist even though I do feel like a stalker saying "I don't care where they are, I really need this symptom cared for now. I will admit, I did get pouty feeling concerned I may again not have my needs met and suffer unnecessarily. I guess we'll see in time.        So I have marie whose sole job is to keep me living the life I want to live. Yayayaya. Then after marie, I was off to infusion for my chemo where I have been set up nicely in my cozy recliner with a turkey sandwich and salad. I'm off and things are running smoothly for the well oiled machine that is me. Let's hope the rest of the week goes as well

Happy Monday

Sunday, August 30, 2009

An Adult Weekend

***Disclaimer: I have been a little more active than normal this weekend. I wanted to maintain my loyalty to you all and not completely skip out. Here is my unedited posting sans pictures. I hope to perfect it tomorrow, but what can I say? I do the best I can.

I was also pretty chatty on this one.****

I had a very eventful, responsible, adult weekend over the past two days.

I’m so proud of myself, I’m going to tell you al about it.

Yesterday’s posting was inspired in part by the fact that I have had the worst back pain I have ever experienced starting Friday.

I want you all to think of pain in terms of me, who has had the entirety of her skin peel off and bowels slough out. My back pain is probably off most people’s tolerable scale.

I, on the other hand, had things to accomplish, like playing with X since I promised him after his first week of school Friday’s plans would belong to him.

I took 60mg of morphone just to bring the pain down to a 2-3 on a scale of ten and have the ability to take a deep breath.

Not a maximum capacity deep breath, but a relatively deep one.

Pain of this variety that impairs deep breathing is especially dangerous for me sin, without deep breathing. Bacteria and musuc could stagnate in my lungs causing pneumonia.

Pnuemonia is high on the list of things that could kill me.

Getting rid of the pain was a very necessary thing, I just had no idea it would take so much coaxing.

I did manage to my chiropractor, Dr. Klema, who also specializes in acupressure.

I love him, and he was able to tell me the site of my pain was where the adrenals were innervated along the spine.

In plain speak, my back pain was probably being exacerbated by a problem in my adrenal glands.

I did just drop a huge dose of prednisone and even before the pain had emailed my doctor asking him if I should stop the prednisone completely.

I didn’t get an answer back on that.

I’m back with my new/old provider partners, and now I have to collaborate the best method of communication so we are all happy again.

I could call with a question about something that is important and making me miserable every other day.

Communication is imperative and every Doctor is different.

I’m still feeling out the territory. A lot has happened over the past year and a half.

After Dr. Klema worked his magic fingers on my spine I picked up X, and what does he want to do?

Tag.

Of course.

I did manage to play 4 rounds of tag before collapsing, but of course, this brought the pain back. I took another 60mg of morphine so I could keep playing.

Then I felt well enough to play like I would if I was normal and healthy.

Normal Healthy Hillary is rowdy. X and I decided to wrestle.

This was definitely not the best idea and very short sighted thus inspiring me to continue the weekend responsible, with adult-overtones.

I really hadn’t been concentrating on my pain control needs, but along with transitioning Doctos and hospitals I decided it was probably time to get a hold on how much I actually take.

WHOA, the number is a shocker.

Over a two week period I took 100 15 mg tablets for pain. This calculates out to 107.14mg of instant release morphine a day so I can continue to be a productive, happy, contributing member of our society alongside having cancer.

Pick up your jaws from the floor people. I bet you never would have guessed, seeing me look so healthy an dput together.

Now know, this number does not even include the 30mg of long acting morphine I take every 12 hours to maintain a baseline amount of medication in my system.

This doesn’t happen over night, so plese don’t go worrying that your newly diagnosed relative will soon be taking these huge doses of narcotics just to function.

I have been sick for years now. Along with being sick has come therapy after therapy with side effect after side effect. There is not a single body system that doesn’t have a legitimate therapy induced reason to severely hurt me.

This is not the case with every cancer patient.

I’m speaking for me.

Praise Jesus Palliative care is on the case.

I had to keep myself painfree and functioning since on Saturday I was hosting a surprise bachelorette party for my lifelong friend, Nikki D., who happens to be marrying another very good friend of mine.

When I said I had an “adult weekend” earlier, you really thought I meant responsible didn’t you?

How cute.

No, it was bachelorette “adult” too.

Margaritaville, pickles and parrots, does life get any better?

Listening to Jimmy Buffet as my house was transformed into Nicole’s personal “Margaritaville” where everybody got “leied” at the door was definitely worth maintaining being pain free.

I also managed to whip up the world’s best Margarita. For all of you who asked here is the Recipe:

Nikki D’s Margarita Mango-Peach Recipe

1 galloon Jose Cuervo Mango Margarita Bottle (Premixed with liquor included)

1 Bottle V8 Splash Mango-Peach (This comes in LIGHT, too, for the future bride that’s watching her figure. These people should really pay me to endorse their products.)

3 cp. Margaritaville Mango Tequila (I didn’t know this existed, but I’m telling you it does. It’s good stuff, and I always thought Jose was my man. Hmmmmm, going to have to rethink this. . . . .)

1.5 cp Grand Marnier (The secret ingredient, no triple sec, cheapos)

Mix, Serve on the Rocks, Makes two gallons

I still have my magic drink making skills. I also made a Strawberry/Cranberry Margarita, but our friends, the chugalugs, didn’t even give me time to try that.

I will tell you that the mango drink was pretty effective in relieving my back pain.

No, I did not drink that much.

Why would I? We just went over my daily prescriptions needs. Who needs to drink when you are prescribed like I am?

We played Who knows Nicole jeopardy and did a little game aptly called “Pin the Macho on the Man.” Use your imagination for this.

We changed it around a little to accomadate a personal joke about how the only stripper Nic would accept was a midget just like the episode of “Friends” where Danny DeVito comes out stripping, but that is all I am saying.

Take a second and think about it.

When time was up and the white stretch hummer limo pulled in from Adventure Limos out of Swanzey, NH (I love this business, if anyone is looking, call them for your limo needs), I did have to decide whether or not I would be bar hopping the night away or whether I would follow my instincts and stay homesafe and sound.

Originally stem cell transplantation patients were isolated, in a bubble, for a year!

I haven’t met a years time yet. It’s up to me to protect myself. Being in active treatment certainly puts my at more risk.

I am pretty confidant the poles and cages at those places weren’t sterilized.

I opted to stay hime with the family, Pierce, my nephew, was having his second birthday party so the family was up.

This is all what I am talking about alongside the adult decisions I had to make. This is the boring “adult” portion of the weekend.

Yes, I had to think ahead, for my health. Not only would running to Manchester to dance and breathe in stagnant air I always run the risk of getting man or woman-handled or having someone sneak to close and steal a kiss.

Yes, people this happens, and honestly, I don’t want to breathe the same air as some of those people in some of those places. I don’t know where they have been.

Ironically, the girls got too drunk to even make it inside the club they went out to see.

I heard from most of them that they were certainly not too drunk. They were just really excited, hyper, and giggly.

I’m pretty sure that bouncers don’t reject a full bachelorette party with veil and pins and everything who are obviously okay with drinking for being hyper and exciting.

I am guessing they were drunk.

Just a guess.

They still had a good time of course.

I decided if I was going to miss out on this major event in the life of a person who I have befriended for over twenty years and functions essentially as a sister (She’s an only child. She needs me) I was going to make today productive.

I did.

I finally am learning to love the extra 15lbs. I’ve accumulated from the steroids and good eatin’ of the summer.

I have little lady lumps now and I’m loving them. I could use a couple extra pounds in the right places and some has settled in my bodacious booty.

I made it to Kohl’s this am with Heather and mom to hit the sales for cheap jeans, and score, I did.

I can now look good with my lovely lady lumps.

Let’s cross our fingers and hope I can keep the poundage on with my chemo TOMORROW.

I’m working at this too. We took a shopping tour of BJs.

I love BJs.

Ooops, my bad. It’s back to that adult humor again (just kidding).

I have a tendency to stock up on food like the end of the world is coming if I know I will become functionally disabled at a certain day or time.

This helps relieve my anxiety and it also helps me function and continue my health seeking practices while I am incredibly impaired.

Someone should give lessons to cancer patients on how to prepare their home prior to undergoing surgery or therapy. It makes life sooo much easier.

Recently, I went over how to prepare foods prior to chemotherapy by making meals with extra servings and freezing.

Now, I’ll move on to buying in bulk.

Paper products are definitely worth purchasing in bulk if you have the space to store them. However, lucky for those of you who don’t have the storage, paper products are also very affordable if you shop sales along with coupons.

There are ALWAYS sales and ALWAYS coupons for these items if you can wait and time it.

I can’t. I shop bulk.

I also like to stock up on cleaning agents.

BJs has bulk, generic sanitizing wipes. I bought these in conjunction with tissues for X’s first grade class.

I’m closing my eyes and envisioning that the wipes will sit right beside the tissue so the two have to go hand in hand.

I’m lucky I have a loving, motivated teacher who will enforce good hygiene all year. I’m going to help make it as easy for her as possible.

If you hadn’t guessed, cleaning products are a good buy too, but what I really went for are items to stock up on that are staples of our diet, especially items for Xanders lunch box and quick easy meals.

I got bulk chicken tenders and meatballs for easy meals.

I also picked up sauces. I love pastas and how creative you can be with the ingredients.

I have found that the Meditteranean Diet or the Latin American Diet fit alongside an anti-inflammatory/ anti-cancer diet I look to maintain.

Ideally, the Asian Monastatic diet is what I should be eating, but does anybody even know what that is?

I keep picturing noodles and water crests. I might wither up and die from starvation if I went that route.

I eat a combination of these two cultures meals, lots of pasta (whole grain of coarse) with olive oil and spices.

It’s theorized the herbal combination of mint, thyme, marjoram, basil and rosemary mimic the mechanism of action of Gleevac, America’s one “miracle cure” for cancer that allows cancer to exist in a person without it causing symptom.

The goal of gleevac is to have cancer without disease. It’s starting point began from actions that occurred naturally.

Not every cancer in the US is treated with Gleevac (Certain Leukemias and non-hodgkin’s are, but Hodgkins is not. Hodgkin’s is, however, treated with a medication similar to gleevac in India with much success. It really pays to have culturally diverse friends).

Pastas are great to through my magic mixture in, as are rices.

Finally, I stocked up on lunch box staples for X: Gold Fish, Ritz crackers, apple sauce, pudding, and gummy fruits. X will not go hungry for a while. I now feel secure and can rest easily.

Now, looking at my refridgerator and pantry, I’m ready for the next two weeks if misery happens to befall me.

I’ve gone on a long time rambling, sometime I will go over how I organize to accomplish the greatest health while in treatment, but that’s just not going to be today.

I do have something very special planned for tomorrow though, and I’m hoping I can get to it before I lose my mind with treatments. I’m going to talk about one of my favorite Hodgkin’s Warrior, Kara, and why so many people have been pressuring me to see Dr. O in NYC. So exciting.

Saturday, August 29, 2009

The worst side effect of cancer

I have decided after 3.5 years of long hard, heavy treatment, what the worst aspect about having cancer as a young adult is.

I think the answer may surprise people, because it really has nothing to do with the physical changes and suffering associated with my disease, at least not on a superficial level.

I could really be less concerned about the state of my hair or my skin when the stakes include my livelihood and life.

No, what is the absolute worst about my illness are the events and times it robs me of enjoying.

I say this is the worst because the hurt from missing life changing moments in my loved ones lives is always an open festering wound that never heals.

Every time another event comes along the sadness and the grief is the same, same level, same intensity as it was the very first time I experienced it years ago.

At least with pain and chemotherapy there is an end point or some relief that can be provided with sleep or medications.

With these emotional scars there is nothing that is seen and really nothing that can be treated.

So what do I do?

I go about my business and pretend I never really missed the events I wanted to attend or the times I wanted to play but had to lie in bed instead.

Eventually, I ignore them to the capacity that I forget. I send the would-be memories far back into the unconconscious of my brain along with the suffering from my first transplant where there is just some dark hole where I have no memories what so ever.

I used to question the existence of “regressed memories.”

I can tell you in confidence, they do exist.

I actually have a conscious hold on sending unwanted memories into oblivion where I say they will be dealt with when I get better.

Really, dealing with all the stress and losses that I have suffered NOW could wreak havoc.

The Stress response in a post transplant patient is poorly studied.

That’s if it has been studied at all, and my guess is it hasn’t.

Unfortunately, I don’t know if I will get to be the one to study this in the future even though it is a very significant and a geeky cool topic that I would LOVE to explore.

This goes alongside the memories I repress out of sadness and loss.

I certainly DO NOT EVER think about what I may have been doing, what could have been, etc., etc.

Those places are OFF LIMITS. They could definitely send me over the edge into one long lasting pity party from which there is no return to my sublime happiness of moment to moment living.

For these ideas, I write, hoping one day somebody will listen and say, “Hey, I am an idea-less researcher/med student/nurse who needs a really cool idea. I think I’ll use that one. Who doesn’t want to understand how the stress response relates to healing in the post stem cell transplantation patient?”

Off they will go with their little notepads to study patients like me.

I don’t know if I have to write my cases in point for the feelings I am expressing here, but to be sure we are clear one what I am saying, I grieve for missing large life events, like baby showers, baptisms, weddings, etc.

Those are all hard to lie in bed suffering through when I would like to be showing who ever I love that I support their decisions and will be beside them, but I can always just send a present.

Those events are usually so overwhelmed with people that getting quality time with the person of honor is impossible.

What I am really talking about grieving over the loss of are the simple things that I would do day-to-day, especially as a mother.

Not being able to be the mother as I always thought I would be is the most painful problem I have encountered.

For this there is no cure, just hope that eventually I will be well enough to have the activity tolerance to do what I would love to.

This hurt is multi-dimensional and constant when I am conscious enough to worry about it because everywhere you look are examples of what could have been or what should not be.

It is the only thing I think about and respond to the same as the first time I ever thought about it, with tears in my eyes and a lump in my throat.

I have finally stopped grieving for the years together we may not have, but I don’t think I’ll ever stop crying over what we’re missing now

Friday, August 28, 2009

Garden Party Politics


"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure." -Nelson Mandela

Thank goodness for my mom this morning.

My internal mom alarm failed to go off to get X to school.

Her phone call woke us up in time to scramble to get him to where he needed to be.

I had a late night last night having galavanted all the way across the state to a health care reform advocacy “garden party.”

I have to say, I don’t think this is quite my scene.

Everybody was very guarded and appeared nervous and uncomfortable.

The median age was about twenty years older than me, unless you were working the tables or a reporter, then I fit right in.

Clearly, I am not the stereotypical face of politics.

I DID do what I went there to do.

I spoke with BOTH Paul Hodes and Carol Shea-Porter!

Both of them, I was so excited.

Did you think I may not though?

I didn’t drive two hours across the state not to.

I managed to hand them my card, but did not have time to impart my own words of wisdom on how to quickly proceed with reform.

How I would start the huge process of reforming health care would be:

1. Tort reform for the establishment of an expert committee to determine the viability of a lawsuit that a plaintiff desires to bring before a medical staffer or hospital prior to any legal action by either parties.

This single action would decrease the costs of excessive and extraneous testing on patients by providing a safety net for care providers who prescribe in fear a frivolous lawsuit may bankrupt them. Having an expert committee decide which cases are viable prior to suit will serve as a deterrent for people who are looking to misuse the judicial process for their personal gain and save hospitals from having to settle frivolous lawsuits to avoid incurring attorney costs.

2. Offer small businesses a health care cooperative buy in program, most likely through the state’s health program offered to its employees, so they can again afford to be in business and provide health care benefits.

This move would be a “twofer” for the Granite State. Not only would it increase the number of insured by making health insurance for small business owners more affordable, it would likely stimulate more economic growth as business owners no longer have the burden of growing insurance costs that may have previously caused them to keep lower overhead costs. In short, this would provide health insurance to uninsured and provide economic growth. These are two goals everyone is looking for right now.

How would this be paid for, you may be asking.

That is very simple too. It’s a BUY-IN program. Businesses would still pay premiums, but because they are now receiving insurance at a group rate through a state cooperative, the premiums will be much less expensive. Everything would still function as normal.

These are two simple starting points that I would work for NOW as the goal of reform before 2010 hits.

I think it would establish NH as the place to watch for innovative reform steps as well.

These two simple good will measures to the medical staff and small business owners of the state will do wonders.

More importantly (and now I am on to the good stuff), I met a woman named Ann-Marie, the mother of a college age daughter, Michelle, who passed away of Colon cancer.

Michelle inspired me to write. Without her existence, I would never be speaking. Her influence is resounding even in death.

Michelle became notorious when she was diagnosed with colon cancer during her college career at Plymouth State.

Her doctors told her to take a leave of absence to undergo therapy.

The insurance company said, go ahead, take your leave of absence, but you’re not taking your insurance with you.

She remained in school while undergoing treatment only to pass away from her disease.

Her story was notorious around NH. It was whispered gossip fodder that EVERYBODY knew.

Thinking of her situation, I theorized that if she could have such a profound impact on the community just by suffering such a horrific injustice, without ever personally telling her story out loud before her death, I could certainly make leaps and bounds of change if I stepped up and started screaming and hollering.

There is just something in human nature that makes us all want to stop and stare at the carnage in a train wreck. When the components of youth, suffering, and political injustice are combined it creates a social wild fire that if harnessed could certainly be a force to be reckoned with.

I wanted to give people permission to talk about me and my disease in hopes that these discussions would bring about social change.

And it is large part due to Michelle, who I never knew.

But I met her mom last night, very briefly.

She had a huge victory yesterday in the passing of “Michelle's’s Law," UNANIMOUSLY, which states no insurance company can drop a sick child from their care due to their inability to remain in school.

This law seems self evident, yes?

Would you believe it took two years to make this a national stipulation?

The process is really going to have to change if reform is coming on the timeline I hear it might.

Really, she was the highlight of my night, and it helped that when we were talking privately Sen. Hodes, her personnal friend, walked by, and I got to meet him face-to-face, quietly!

Hopefully, he thinks he has met the next little patient who wants to bring about social change, because he certainly did.

Thursday, August 27, 2009

Morning Health Update

Hobnobbing For Health Care

I am officially THE COOLEST!

I received an invitation for a congressional send-off BBQ with healthcare as the primary topic of conversation.

I’ve heard of these dinners where there is a “topic” and everyone needs to come informed from the Manhattan dinner party social scene.

This sounds far more fun and productive.

Now this is a way to bring a smile to my face, and luckily, it coincides with my healthy days.

I’ll be picking up and heading to the coast this evening for my first event of this nature accompanied by my father, of course, who will quickly brush up on health care reform and how it is affecting small business owners and hang out with. . . . Democrats, just for me.

I’m going to do a little research too. Hopefully it will prepare me for a situation I have never been in and know nothing about.

Those are always the most fun aren’t they?

Let me practice a little of my conversation on you. . .

What I am seeing as a trend, in contrast to Sen. Gregg’s concern that a public option is a one-way street towards government run healthcare, is the path we are on NOW is a one-way street to masses of uninsured.

The trend among my peers who have become unemployed due to the recession is that they are now finding work, but nothing above 40 hours.

All positions require are 37.5, which keeps them just below the amount required to provide insurance.

Business owners simply can not afford to stay in business and provide healthcare.

A small business owner with a family of three in NH paid $22,000 in premiums last year alone.

That’s before his $6000 deductible.

Just recently, he received a notice stating that his premium was going up, just a small $150 a month.

What is being paid in health insurance premiums, before anyone ever gets sick, outpaces what a teacher makes in their first year.

Is it any surprise businesses are no longer offering these benefits?

I am really more fearful of the road we are on than the road we may possibly go down.

How is that for starters?

The passing of Sen. Ted Kennedy has certainly opened a wound and increased the urgency for reform. He was certainly a pioneer in this arena.

NH undertook its own personal loss recently when Sen. Bob Odell’s wife, Anna, passed peacefully of ovarian cancer.

The Odell’s have been a fixture in our community throughout my lifetime, and her presence will surely be missed.

Everyone of cancer’s martyrs will hopefully have their legacy lamented in the upcoming reform.

Disease absolutely crosses party lines and I’m happy to live in a time where we all agree health care can be improved for the best interest of patients.

I know, as a patient, that no one would want progress halted for mourning.

Now, I’ll have to figure out what to wear.

More importantly, with the time being from 5:30-7:30, how am I going to stay awake, forget about congenial, charming, and intelligent, past 6:30?

Wednesday, August 26, 2009

Climbing The Walls

First Day of First Grade



I’ve been tossing and turning the past couple nights trying to figure out how to finally oust my gigantic child from our bed.

He almost had me reconsidering taking a tougher stance when he crawls up in the middle of the night yesterday when he woke up, snuggling.

He had me reconsidering until I whispered, “Hey, you start school tomorrow.”

“WHAT?! NO!!!! I don’t want to start school. Noooooo!!!”

Okay, kid. You’re getting ousted for disturbing the peace.

Thank goodness I was finally starting to feel better.

I decided to change my medications up a little bit and stop hitting the ativan in the morning when I wake up ready to throw up.

I’m wondering if my nausea is just a conditioned effect from the years of chemo that I get alongside the fatigue.

My body just associates the two symptoms going hand and hand.

But the ativan has been knocking me out.

At least I hope that’s what has been the cause of all the fatigue.

I really hope it’s not going to be the story of my treatment that I am sick for a week and a half and good for four days.

Luckily, I was able to think, and realize, that I hadn’t prepped X at all for school.

His “new school” is less than a mile away, but I had never brought him. He had no idea what would happen today.

I dragged him out to check out the playgrounds.

It didn’t take much arm twisting. He was psyched.

Then, as luck would have it, who did we see when we were checking out the playground, arms full of goodies with the door open to her classroom? Mrs. B, X’s teacher.

Sweet.

We first met Mrs. B, randomly, playing in Claremont. Mrs. B. and I get the same fun mom ideas and I would bring X out to play and she would have her daughter there too.

We just like to do the same fun mom things.

We ran into each other at the ice rink and playground more than once, hung out, but never really got acquainted.

We were surprised to see each other when we were planning X’s year this year.

Then again, fate intervened, and we hung out all summer because her daughter was on our soccer team.

We’re good. X knows his teacher. She is awesome.

He also got to check out the new class, where he was sitting, who he knew and who he didn’t.

I could see his anxiety melt.

Then last night, when reading X the introductory letter to the kids from his teacher, his fear came back after reading 1. Find your cubby and 2. Say hello to a friend and 3. Read the introduction letter.

Shock and terror registered across his face, clearly expressing the thought, “I’m going to have to READ on the first day of school!!!”

He has been stressing about the fact he will have to learn to read this year for a while now.

I am excited that he feels secure enough to freak out about learning to read.

That is so normal. That means he is not so preoccupied with being anxious about me that he can worry about normal child things.

YAYAYYAYAY.

I think we’re looking forward to a good year.

He wasn’t cooperating with my pictures this morning. He must have forgotten the tradition that I get serious first day of school pictures. He is trying to make it clear that he is “big time” this year.

I am excited that I’ve been able to participate in these first days of his first years of school.

No matter how much we prepare, there is still that moment when we drop him off and I leave him at his desk, and our eyes lock.

We both know we just want to stay together but he’s growing up.

These moments, the simple, normal everyday moments are what makes all the pain worth it.

Rx

This woman walks into a pharmacy and asks the pharmacist for some
arsenic.
He asks "What for?"
She says "I want to kill my husband".
He says "Sorry, I can't do that."
She then reaches inter her handbag a pulls out a photo of her husband
in bed with the pharmacist's wife and hands it to him.

He says, "You didn't tell me you had a prescription..."

Tuesday, August 25, 2009

Medco: Putting Money In The Middle of me and my health



I was getting depressed, seriously depressed.

Last weeks chemo hit me harder than I anticipated and I was really wondering if the couple days of health was going to be worth the week and a half of misery.

There was certainly a lot of misery, but I eek out the good where I can.

But you know what finally brought me back to reality and dragged me out of my misery?

A phone call from Medco.

I have written about Medco before.

Medco is my mail-order pharmacy.

I have to use Medco, because my insurance company says I do.

I would really prefer not too.

With medco I have to anticipate what I need in advance to order it so it arrives when I run out. It’s not simple. It’s not conducive to changing medications. It’s really just making my life all around difficult.

I just want my medicine.

Do you think, in my condition, I can organize all twenty of my medications to make sure they arrive EXACTLY on the day I need when they need to be ordered A MINIMUM of 8-10 days in advance.

I just want to hit the pharmacy.

I say “a minimum” because Medco has to confirm the prescriptions with my Practitioners.

First of all, the insurance company is calling for prescription orders?

How and when did they become involved in the prescribing process? Ideally, shouldn’t I be receiving the medications I need?

Adam, the representative, actually stated that I could call to expedite the process.

To start, I actually tell Medco what I want, and then they send a message to the office for an “official” script.

I’m sure if I could just order it myself from my bedroom they would accept that.

It would certainly cut out time and time is money.

But that hasn’t been worked out quite yet. I still need actually need a prescription.

The Practitioners still need to be involved.

Ironically, My scripts are from 4 different practitioners!!!!

So somewhere between dying and enjoying my life I’m going to find the energy to call all four different people and ask them to please take time out of their busy schedule saving lives to bow to medco’s demands…….

Which they will, I need my prescriptions.

If I don’t Medco sends a message requesting they write a script for, let’s say, Acyclovir 400mg TID (Three times daily) for 90 days.

Maybe this wasn’t exactly what my doc wanted to order, maybe I’ll be off of it in 20 days, but this is what my insurance will pay for, if I take their good handwritten prescription to the pharmacy for a dose in the amount I actually NEED I risk complete NONPAYMENT.

Or, even better, is as the case of my lexapro, if the company makes some special business deal with the manufacturer of a very similar but not quite the same drug like, like maybe Celexa, then that’s all well and good, they can write that prescription.

Their not getting in the way of the doctors, but I’ll just have to pay $120.00 for the three months for my lexapro instead of $20 for the celexa.

But it’s my choice.

I can’t believe I have tallied up millions in health care costs and I am still battling over anti-depressants.

Anywhere they can squeeze a cost.

This is probably why Businessweek or Forbes or someone called them the THIRD best new company in the US screaming and hollering for people to invest in a recession.

Illness is big money. People will always need medications. It’s recession proof.

Obviously,The Practitioner, for the good of the patient, sends them whatever they ask for, as dictated by Medco (i.e. must be ordered in 90 day intervals for a period of one year).

I can’t count the number of times I have sat and schooled my doctors in how to specifically write my prescriptions so I will be able to afford them.

Repeat after me, “Drug X, 90day supply refillable for 12 months.”

Yes, I now sit down and get those details out of the way, and it’s just accepted like it’s okay for the insurers to decide what and how my doctors prescribe.

It’s not like my doctors went through years of schooling, mounting debt, and tireless hours to be able to possibly cure me.

By the time they’re settled into working it’s a shocker when suddenly the insurers come knocking, saying, everything you learned in all those pharmacology classes is useless since the patient can only afford what we say she can.

Docs might as well just hand the insurers a stamp signature.

Anyway, this isn’t even the point. These are old ramblings.

This isn’t even what sent me over the edge.

I learned something new today.

Thank Adam (I won’t publish your last name) for letting me know about this new special thing called a “floor limit.”

A floor limit is a maximum amount, in Medco’s case $100, that is allowable for billing.

If the bill comes to something larger then you have to put money down on your credit card.

I spent $187.99 for 3 months worth of 4 meds.

I take far more than four.

We’re not even going to get into how EXPENSIVE this today.

I only ordered four, but when I said my favorite words that have worked so many times to get me by before (That’s “Just bill it, please) they hit me with this floor limit.

Obviously, medco has caught on to the lines of broke patients like me and decided they are not fronting their meds anymore.

They will get paid or I will get nothing.

They’re kind of like a big, nasty threatening drug dealer hollering, “Give me my money upfront or you ain’t getting’ nothin’”

In that case I would because I am addicted.

But I’m not addicted, I’m sick, maybe dying, and they still want to fight about getting their money.

So it’s on!

I was told to appeal I “could call management,” but basically, it’s just to double check the policy and they’ll tell me no.

These policies are all very special.

A policy was how I got ousted from getting a monthly income from Reliance Standard.

I bet that case worker got a raise for finding a way to save them $566 a month FOREVER, seeing as that’s how long I will be disabled.

So I did whip out my credit card to pay.

It’s a pay or die option, or if not pay or die, pay or suffer A LOT.

And you were worried the government was going to get in the middle of you and your doctor.

I think money has all ready found its way in between me and my medical care.

Monday, August 24, 2009

CYA Treatment

"I saved your life?!" "No! You ruined my death!" - The Incredibles.

Ah-Ha. I have it! Leave it all to me.

No worries everybody who has been toiling endlessly through out America trying to reform this CRISIS that we have been calling “health care.” There is another piece of the puzzle that could save some coin quickly and efficiently.

It would also throw the AMA a small bone.

It’s tort reform.

Yes, people, tort reform.

If you ever wondered what I laid around in bed thinking about, now you know.

This is what I think about in my leisure time to relax my brain.

I am a dork.

I know.

I am okay with it.

I actually think it’s hot.

I think you do too.

Of course Obama is SERIOUS about controlling costs in healthcare reform.

I am pretty confidant that this is something all parties can agree on.

We want effective reform and we want it cost effectively.

Good.

Now that we have the goal in place, why not take a small step by defining FRIVOLOUS MEDICAL MALPRACTICE LAWSUITS.

I am not a big fan of big government defining and micromanaging everything, but I have to say, litigation within the medical community needs to be controlled.

The consequences of opportunistic litigation is resounding.

It has forced physician’s insurance premiums to skyrocket to prices that can easily bankrupt a small practice.

It has also contributed to increasing cost of care due to the very popular “CYA” method of caretaking.

That’s “Cover your ass” people.

That means order everthing that could possibly, ever, be necessessary in this world or the next. This way if a lawsuit ever does materialize all the appropriate tests would have been ordered.

All those appropriate tests are also often all unnecessary tests that would only be necessary in the context of a legal suit.

But no one knows which patient is which and who will be the one to send a physician to court so everybody gets the “CYA” treatment.

By finally declaring what is, and is not, a frivolous, opportunistic lawsuit against a care provider, theoretically, insurance costs would be lowered and the extreme costs of “defense medicine” would no longer exists.

Practitioners could actually practice without fear that they’ll be sidelined by a ludicious demand for cash payment over hurt feelings.

What’s really the beauty of this? I haven’t quite gotten there yet.

Tort reform can occur prior to a large health care reform legislative package.

Reform in this arena could stand alone as a separate piece of legislation.

This would be a great act of good will towards confirming that our government really does have its citizen’s best interest at heart.

I can’t wait to see this olive branch extended.

Sunday, August 23, 2009

Testing. . . new digs

The American Medical Association Weighs in on Healthcare Reform

The American Medical Association Weighs in on Healthcare Reform

The Allergists voted to scratch it, but the Dermatologists advised
not to make any rash moves.

The Gastroenteritis had sort of a gut feeling about it,
but the Neurologists thought the Administration had a lot of
nerve.

The Obstetricians felt they were all laboring under a misconception.

Ophthalmologist considered the idea shortsighted.

Pathologists yelled, “Over my dead body!” while the Pediatricians
said, ‘Oh, Grow up!’

The Psychiatrists thought the whole idea was madness, while
the Radiologists could see right through it.

Surgeons decided to wash their hands of the whole thing.

The Internists thought it was a bitter pill to swallow, and the
Plastic Surgeons said, “This puts a whole new face on the matter.”

The Podiatrists thought it was a step forward, but the Urologists
were pissed off at the whole idea.

The Anesthesiologists thought the whole idea was a gas, and
the Cardiologists didn’t have the heart to say no.

In the end, the Proctologists won out, leaving the entire decision
up to the *ssholes in Washington.

Life Has a Mind of Its Own





Lying in bed for the sixth hour straight, staring at the ceiling and hoping and praying that I am just extra tired from this past week's combination of treatments and procedures (maybe taking care of a sick X too?) and not clothes lined by what ever virus xander had last week, I'm thinking it's pretty clear life has a mind of its own.

If it didn't I wouldn't even be here.

Believe it or not, I know where your mind is going, and it’s not there. It's not what you're thinking.

I wouldn't be here living the American dream with the beautiful country estate, engineer husband, 1.5 children, perennial garden and german shepard.

No, that was not my plan.

This scenario was one of life's crazy twists that happened.

Thank goodness it did, because this NH country living set up has really worked well as the primary backdrop to restfully fighting cancer (how much of an oxymoron is that?).

Though life has set me up in relatively good condition to fight a horrible condition and system by making sure I was significantly educated, financed and insured, there are always variables.

Yes, variables. Variables. Variables. Variables.

These are why I am broke, broke, broke.

But variables are really the spice of life.

X was a variable.

Lex was a variable.

Let’s talk about her.

Our niece has always been a much loved member of our family who we pledged to care for and give all the chances x would have.

She is Jon’s sister’s first daughter.

She was a deal breaker when J and I got together. If I wasn't willing to mother her should he become gaurdian all future dates were off. We gave our word that we would take on and kept it, with sabbaticals when we thought my cancer was temporary.

I am sure many of you have wondered why with all our problems we have kept our dedication to her.

It’s simple. Life isn’t always about us. We’ve had our time. We stated we would allow her to have the best possible childhood given her circumstances, and hope with our intervention, she would succeed in life.

There were always places in the budget where we could cut.

But now my cancer is here, my medical costs have sky rocketed, I have gotten a pink slip from an "insurance company" and we have all ready cut from the budget all we can.

Where do you think we are looking to cut next?

This obviously isn't by choice.

We gave a child our word that we would love and protect her to the best of our capabilities, and really to a child, if you don't have your word you have nothing. We just can no longer afford to eat, pay our bills, and clothe a child that is not legitimately ours, even though we have taken the responsibility for years.

We will not be signing her up for sports in an attempt to help her socialize and assimilate.

There is no cash for that.

Will we be buying clothes that fit and are appropriate for each season?

No.

I can’t count the times she has come to our home with shoes too small or clothes that she would freeze in.

We won’t be able to provide the security of these needs anymore.

It was never our responsibility anyway.

We were trying to show our niece the love and safety the world had to offer that she hadn’t encountered elsewhere in the world.

Even worse, do you think she'll even be coming around to have family time? No, there is little time for that, even if Jon has been her primary male role model and we are the only young married couple she knows.

I am too sick. He is too stressed and we now no longer have the flexibility to consider providing a minimum for 2 kids.

So due to the economy, the state of our health care system, and my overall lack of health, we're going to have to let Lexi go.

She'll just fend for herself with what her single unemployed, "disabled" mom can provide her along with her two other children.

America looks out for our young and innocent doesn’t it?

The “insurance” company pink slipped me, and now these are the affects. This is what occurs when corporate America brings down the gavel with it’s small print, cutting off rightfully owed services in exchange for healthy profits.

Children suffer.

Alexis is suffering.

I am sure there are so many others out there who have been forced to suffer loss after loss after loss, like we have. Little do we know when we start that it is just a never ending cycle that will not stop taking until we have been robbed of everything.

And we thought losing our health was enough.

I thought losing my functional capacity was enough. I thought losing my roles as a caretaker and a mother was enough. I thought losing my career and my license to work as an RN was enough. I thought it may end at me sacrificing my 20s to a terrible disease.

Silly me, there’s more to be had.

Now, we can't even afford to be role models to a child we have cared to for eight years.

This is sad. This is wrong. It’s downright reprehensible, but life goes on with a mind of its own.

Now, how do we explain this to a nine year old?

Saturday, August 22, 2009



I’m awake.

I’m up.

At least I think I am.

I am in that limbo somewhere between being awake and being asleep.

I could really go either way right now.

I have been mostly asleep since I returned from the hospital around one yesterday.

I dragged myself out of bed to go to the in-laws to deliver lexi’s back-to-school clothes.

It was worth leaving my cozy sheets to see her put outfits together and ponder which look will be best for the new year at her NEW SCHOOL.

Yes, her mama moved. Lexi is starting yet another new school, but at least she’ll look good.

Then I made it back a couple hours later to pass out again.

I did wake up at 7am, the time X dictates I wake up.

Being six, he understands that I’m not feeling well.

He is still not feeling well. His poor stomach just won’t return to normal.

We snuggled watching Scooby Doo, me drifting in and out of sleep.

He’s going to kill me for writing this, but at one point I looked into the bathroom only to see my naked little man lying on the bath rug, naked, butt in the air.

“What are you doing, Bud?” I hollered out.

“I have the toots.” He replied,sadly.

“Well, how come you’re in there?”

“They smell bad and I don’t want to make you sick.”

He was right. He did smell and the wrong butt blast could have sent me hurling into the toilet, but just knowing that he had made the conscious decision to exile himself from the bed while he felt sick for my health was to much for my mothering heart.

I got h im to come back into bed.

Somehow I did manage to get him dressed and prepared to get him out the door when mom-in-law arrived at 8:30, but that doesn’t mean I ever woke up.

I think the treatment, taking care of X, and my procedures yesterday have caught up with me.

I need to prioritize my energy.

My medi-port placement went smoothly.

The team was fun. They practiced like I used to. They had fun, treated it like it was a sport and they were in it to win it.

They even asked if I was concerned about scarring.

How cute, seeing as my neck is one diffuse scar, but it is the thought that counts.

Once I was knocked out for the procedure I was out, nice and comfortable.

Then it was off to see palliative care.

I’ve officially been trying to sign on to their care for a while. I think I’ll hugely benefit from professional management, I can’t waiat to see their magic.

Here is another special event for the “oh-no-she-didn’t-cancer-chronicles.”

After my procedure which uses “conscious sedation,” a combination of versed and fentanyl extremely effectively.

I was given the minimum amount of time to chow down some food (which helps me become more cogniscent) and recover from the anesthesia and preodeure before I was wheeled down for my meeting with Marie from Palliative care.

No problem, I like my appointments consolidated.

Little problem, the whole idea of conscious sedation is that the patient is comfortable, the procedure is painless, and the patient will come out untraumatized because they don’t remember any of it, but the patient still has the capacity to talk and rely if they are feeling any pain.

These meds don’t wash out of the system with a snap of the fingers, two breadsticks and a side salad, but whatever.

My meeting with Marie turned out to be a collaborative meeting with 60 minutes who had been tailing her for the week trying to find an angle to do a report based on palliative care in light of the possible upcoming health reforms.

Lucky me, I made on to the list of interesting people to talk to.

Unlucky me, I was high off my ass on this combination conscious truth serum that makes me just talk away.

I know the producers were not searching for the world’s most sober cancer patient.

They were interviewing palliative care patients.

I am pretty sure they at least thought the patients would remember them and what they spoke about.

Guess who doesn’t?

I do remember the producer and the assistant producer.

How could you not?

I would really be out of it then.

But give a girl a break here, I had chemo on Monday a procedure on Thursday where I’d been given “conscious sedation drugs” that’s entire purpose is to make a person talk but forget what they said.

Oopsy.

I know we talked. I know it went well. I also know it went well for an entire 60 min!!!

What I don’t know is what exactly I said and how coherently and effectively I said it.

There is my big chance to talk about all the devastation and stress I’ve been put through my the insurance industry and medical black holes, but I can’t get it together.

I do know that I was my regular old, happy-go-lucky, go with the flow, the health care system is wrong and must be fixed immediately self.

I just don’t know exactly what I said to convey these points.

The two people in the room with me, Dad and Marie ARNP, are not people who would ever say I said anything wrong.

Really, what good would it do.

So I’ll be left wondering.

I am certainly sure that I am probably the only person they spoke with who instantaneously forgot what we talked about as soon as we left the room and I became focused on that sleep I wanted so badly.

C’est Le Vie.

Anyway, I am really praying/hoping/crossing my fingers that they liked me enough to come back around.

I certainly enjoyed them.

Friday, August 21, 2009

From Last Night

I am in bed, sick and exhausted. I am trying not to move but still write to you and somehow fit in watching the soloist. This is a combination of illness and medications. I can barely concentrate on one thing long enough to complete anything, but what I did accomplish today was big time. I am now allowed to take a weekend of recovery rest. What entitles me to this (other than the fact that I am extremely ill and need to constantlty treat my body like a temple)? I spoke to 60 minutes today!! Now, let's not all get too excited, but I have to say I am.

Thursday, August 20, 2009

It's Medi-port day!



Lucky you, lucky readers, X woke me up at 4:30 this morning, giving me just enough time to type an update before I head out at 6 AM to get my mediport placed this morning.

X is still suffering the effects of whatever he was suffering from.

He had a bloody nose at 4:30.

Since I decided to wake up anyway he’s now hanging out, watching cartoons, along with the dog and the cat.

In this household, time really has nothing to do with when everything wakes up.

It has a lot to do when I get up.

As soon as I move that leg out from the covers I have the dog nudging me, following me around for food and to be let out.

After a while, Josie the cat, gets brave to ask for what she wants.

Then she just gets irritated she has had to wait and stands guard in front of my coffee maker meowing, trying to make it clear that I will not have my coffee until she gets her water.

I don’t think so.

All the meanwhile, Xander is bouncing around and I feel ill.

I have heard some mumblings about X having the swine flu.

I want those mumblings to stop now.

That is a very, very scary idea.

Whatever he has, it’s nasty, and I will admit I am scared.

This would certainly warrant a hospitalization for me.

That just doesn’t fit in my schedule right now. I have plans. I need to keep things moving.

The illness has torn through my parents, brother, sister, her entire family, Lexi, and has now moved onto xander where it will hopefully stop.

It will not be kicking my ass anytime soon.

That is not where it’s headed next.

But it would be appropriate. It would be the story of my life, seeing as both Anna and Dr. G are on vacation next week.

I thought once they graduated and accepted their position they had their beepers surgically implanted into their forearms.

I know Dr. Alyea did.

Anyway, today is mediport day.

I love mediports.

It is like a security blanket for cancer patients.

I now know any hospital anywhere will be able to have central venous access in an emergency.

No more poking and pricking to find IV sites.

There is a lot less pain involved where there is a mediport.

The tracts in my antecubitals can disappear again.

All it takes is a simple procedure with conscious sedation.

I will be getting fentanyl and versed today.

It is one of my favorite combinations.If you ever wondered if my narcotics clouded my judgment just a little bit, I can assure you versed makes me throw all caution to the wind.

Some people do drunken dials in their twenties. I do eprazolam emails.

It tends to bring the wild side out, kind of like tequila.

I am hoping my dad will keep me under wraps, but that has never been his strong suit.

I am sure, if he has a choice between controlling my silly instincts and letting me loose, he’s going to instigate me to let loose.

I guess we’ll see what happens.

After this morning I will just have a little round disk under the surface of my skin with a line threaded directly to my heart to send any chemotherapy or medication I need through.

Hooray.

Who knew the simple things could make me feel so secure.

And of course, Sen. Judd Gregg is in Salem today hosting an open forum on healthcare.

As usual, it was announced at the last minute.

I would love to go see him. Actually, of all the political representatives I would like to meet, he is at the top of the list.

Sen Judd Gregg has represented NH for a very long time and is really the loudest republican voice in health care reform.

His role in the upcoming changes intrigues me. I hope to get a better picture of where he stands soon.

Wednesday, August 19, 2009

Just when you thought you had heard it all. . . .


Just when you thought you had heard it all. . . .
Just when you thought capitalism couldn't find anything more to sell. . . .
Just when you thought morality may reign in science. . . . .
articles exposing practices such as patenting genes come out.
According to the attached ACLU article, The US PTO has allowed the patent of genes despite the bioethical ideology that patenting something in nature, such as gravity, is wrong.
Twenty percent of our genes are currently patented (or owned) by corporations.
Among these genes include two genetic markers for breast cancer.
These two genes are patented by one company, giving that company the sole ability to decide who can and can not receive testing to verify future risk of a breast cancer diagnosis.
The company can say when, it can say where, and most importantly, it can set the prices based on its patent.
It is a monopolity of breast cancer genetic testing that only the most terrifying science fiction author could have dreamt up.
And it's true.
Thank goodness there is hope. The ACLU has filed a first-of-its-kind lawsuit citing that patents on genes will halt scientific progress and serve as an obstacle to finding cures.
Let's cross our fingers and pray the right choice is made.
To Show your support, go to www.aclu.org/brcastatement

Apparently somethings do have to be micromanaged by law or we risk having the wrong person "own" the knowledge that could save a life.