H. Grace Earrings

Xander Coping

The most difficult aspect of this hospitalization has been the separationits caused between my family and me.

 I saw Jon and Xander Thurs., Fri., and then Sat. for a while, before I slept through their whole visit Sunday.

Ugh. It's so sad. I miss them. I can't imagine how X feels. HE bought me a stuffed Ferret the day I was hospitalized for me to snuggle with while we were apart. It was perfect, and so thoughtful, knowing howing important saving is to him.

I've been in need of reorganizing his therapy recently. He was in a great anger management group, but then I became to ill and tired to drive him back and forth.

Maybe Weds. at three is a possibility, mom could get him there routinely. Afternoons at 2pm my mom could bring him, then it's a twofer, he gets therapy and Nana bonding time.

Outside J and I, mom may be his 3rd closet confidant.

Recently, he's been calling her at night. I don't know what's going on his mind. I just want to know how to make it better. I have found that having a day scheduled for therapy seems to be more productive than just the therapy alone.

I wish it was that easy.

He gets special time with a suportive loved one. I'm sure at this age he's generalized the possibility of losing everybod as a possible loss. Nana seems to be his safety net, my possibile replacement. He clings to her when he feels anxious. He's been making calls at night to get them to do homework when he senses I'm getting tired, ill, and in need of going to bed.

I'm so glad he has a reliabable loved one he's confortable with. We're so fortunate. 

My puppet fareet for my hospital stay that has hidden around my room, scaring some poeple. It was $30 and with his iron grip tight wade in cash, I can't imagine what made him wager this purchase.

All I know is that he is clearly depressed and anxious.

Those emotions are clear. We haven't found a way to cbtrol it but were trying.

Maybe sometime.

We would like to unlock his mind and understand what he has going for him. Time will tell.


I try not to worry. I try not to focuss on death. I could lose days in the what ifs.

I lose hours everytime I have a new diagnosis coinciding with my disease, but focusing on bad will bring bad.

I choose to believe amd hope focusing on the good will bring the good to me. I read the book , The Secret, for two seconds before I was overwhelmed by its almost simple silliness, but I tried it and it worked.

I've always allowed faith to guide me. I call my higher power God, but I welcome all those who use different name, believing the same commitments of loving everybody.  My faith, My love, my family and my son is what has gotten me so far, that and some tenacious diligence.

The Bucket List

I never thought I had a bucket list. I know people do. They have long, extensive ones that maybe they could accomplish if they were a millionaire. Events incked down like: travel to Bali or sky dive, learn to ride a motorcycle. There are even books dedicated to the idea: the writer of 1000 Thigs To Do Before You Die, killed himself trying to complete his list at 46 YO. I've tried to help people finish theirs before. I ran naked into the caribbean ocean at nighgt, but still no real urge for a final "to-do" list.  But I guess I do. Rip chording through the rainforest has crossed my mind, but why there when I can attach a chord in my backyard and do it everyday with my son. That sounds much more fun. Then there is the must-do bucket list. That's the bucket list that pops into my mind when I know I'm sick, and possibly one the verge of death, it's then I think of all the things I've yet to do and would like to. The list includes making a difference, revolutionizing health care so patients no longer have to fear they'll have their insurance dropped after years of paying in. That they can die peacefully, with dignity, accepting their diagnosis and feel every once of life possible, such as the fear, sadness, and anger that accompanies it. But that's not it either. I want more time with my family, to see how deeply I can fall in love with j, or how successful x will become. I want to know all the "what ifs" and see if mt life will play out like I dreamed. It hasn't so far. But maybe that's my purpose, not to get too attached to these distractions, maybe I'll rise above all the beauty and the consumerism and somehow, not care that my lungs are failing again at 28 yo, and be okay with meeting my maker earlier, getting to understand why the world is how it is, and hopefully, laugh at the joke. I'm fortunate I've lived my life,  according to my beliefs and morals, and now, I have no reason  to woerrY. I still need to give and get love and respect.
I never thought I had a bucket list. I know people do. They have long, extensive ones that maybe they could accomplish if they were a millionaire. Events incked down like: travel to Bali or sky dive, learn to ride a motorcycle. There are even books dedicated to the idea: the writer of 1000 Thigs To Do Before You Die, killed himself trying to complete his list at 46 YO. I've tried to help people finish theirs before. I ran naked into the caribbean ocean at nighgt, but still no real urge for a final "to-do" list.  But I guess I do. Rip chording through the rainforest has crossed my mind, but why there when I can attach a chord in my backyard and do it everyday with my son. That sounds much more fun. Then there is the must-do bucket list. That's the bucket list that pops into my mind when I know I'm sick, and possibly one the verge of death, it's then I think of all the things I've yet to do and would like to. The list includes making a difference, revolutionizing health care so patients no longer have to fear they'll have their insurance dropped after years of paying in. That they can die peacefully, with dignity, accepting their diagnosis and feel every once of life possible, such as the fear, sadness, and anger that accompanies it. But that's not it either. I want more time with my family, to see how deeply I can fall in love with j, or how successful x will become. I want to know all the "what ifs" and see if mt life will play out like I dreamed. It hasn't so far. But maybe that's my purpose, not to get too attached to these distractions, maybe I'll rise above all the beauty and the consumerism and somehow, not care that my lungs are failing again at 28 yo, and be okay with meeting my maker earlier, getting to understand why the world is how it is, and hopefully, laugh at the joke. I'm fortunate I've lived my life,  according to my beliefs and morals, and now, I have no reason  to woerrY. I still need to give and get love and respect.

last week"s history

SAVE LITTLE OLIVER!  Bone Marrow Drive; Ashbrook hotel,  Hampton Beach. If you wish to get on the bone marrow list, go to any blood drive and check the box stating "I want to be a bone marrow donor.". The workers will take care of the rest.                             I haven't been writing recently. It suddenly became really hard mon, the start date  of bendamycin or bendamustine.  My mind was overwhelmed,Not blocked, but not working well I felt swollen and confused. I  rubbed my stomach and continued my business.  I did my ACS INterview regarding the 2 million dollar maximum and the affordable  care Act  as it effected me. I dressed up pretty. They even had a make up woman for me. Was I psyched or what?!  I was told I had good quotes and sound bytes, whatever that meant. I don't know the movie lingo, but thank goodness I could fake it because by Wednesday I was seeing double and plastered to my bed, my  tumors growing in my stomach.   God knows exactly what I needto do before my health takes over.                  Quickly I began to see double. I couldn't text.  I decided to go to bed! And I did. I did have a small temp., a cough.     Thank goodness I have the loving supportive husband I do, our life is not easy with my sickness and disabilities. He takes over when I am unable. I feel guilty not being able to due my share. He's done all the laundry from FL. I've tried to organizeN but he's keot x in a quesi-routine. Thank goodnessa for him. He's our rock.  On Thurs I had a life long (I'm talking since kindergarten 1st day). He took me to my labs and kidney ultra sound then to my appt when WHAMO the bad news I saw coming but he didn't came.  " You need a kidey stent" B's mouth dropped I nodded my head. I know. I was so swollen. I couldn't put my loosest jeans on. I could've used a stent weeks ago but I was insistent on joining the fam to go to disney. And I made it!!!! By the time I saw Anna I was beginning to talk nonsense. I was entering into my half world state where I am still part of this world, but I'm comfortably moving to the next, completely releaxed, just the ailments I came in with.   The stent was placed with no anesthsia! I was so confused and semi- conscious they didn't want to sedate me.  I did complain. I complained I had to pee when the catheter was moved through and that "it hurt" but nurse Scott held my hand.  There was always a person holding my hand. These people may have been the most important. They reminded me I was attached to this world and their was love here for me. Sometimes, the most important roles are the simpleist.  Eventually, when I was resting in my room I would see figures, blurred figures, like spirits. I do feel close to the spiritual world, but don't be afraid.

What I know

I think my "shooting," "interview," "Thank-you note," what ever it was to the American Cancer Society went well yesterday.

I say "I think" because it was done the day after receiving bendamustyne, my brand new to-me, never tried before chemotherapy.

So I'm not sure how with it I was. I remember being complemented on my "sound bites" and having the director tell the interviewer to let me "just go with it." My Dad didn't come rushing in waving his hands saying "no, stop, now, you can not say that."

However, if we got too far off the track of the 2 million dollar maximum caps that had been removed I wasn't as affluent, since that was my chosen area of expertise.

I've almost hit it twice now. I even let some tears shed.

I hate that. Crying, publicly, when my brain feels like mush.

But I had my very own make-up person who took control of making my face pretty. The interviewer would sometimes call for my nose to be "powdered," and I was the star for the day.

It's exciting that my situation is getting so much attention. I just hope that people understand that my situation is not unique, that a young RN and aerospace engineer with one child and everything going for them in life was stopped in their tracks from accomplishing their dreams due to the high cost of medial care in this situation.

Take Wyatt, for example. Wyatt was a regular rambunctious boy, having to be told to stop climbing even before the age of one when he was suddenly lost to the world of autism.


In the words of Wyatt's Father, Dave Snyder, "Wyatt was suddenly in a silent world where he would spend hours stuck on repetitive motions if we let him. He no longer had any eye contact with us, and stopped talking at all. In fact, he became very silent, and rarely even babbled. He would spin in circles waving his hand in front of his eyes, or push a matchbox car back and forth two inches from his eyes. 


He would scream bloody murder when we tried to break him away from whatever he was stuck on. His appetite changed, and he became extremely picky. He started losing weight as he began to throw up completely undigested food often. He lost the ability to have a bowel movement on his own."

Before Autism

"We soon went from being totally ignorant about Autism, to learning that this new epidemic is primarily a set of symptoms related to toxins damaging the gut. Since the gut is tied directly to the developing brain of a child, all sorts of things start going wrong there."


The Snyder's tried everything to keep Wyatt's gut safe in hopes of maintaining is brain function. After going through $20,000 in savings, realizing they were just putting bandaids on a systemic problems, heir research lead them to a possible cure!


Seventy children had all ready found their way back to optimum "normal" functioning, and the Snyder's wanted their Wyatt to be one. After a year of praying for the finances, they received a grant that would pay for Wyatt's monthly cost. 


Treatment was started immediately, March 10, 2009.


The family was overjoyed by how quickly Wyatt progressed in this program. Between 5 and 6 months Wyatt has progressed to the point where some of his preschool teachers couldn't believe he was the same child.


Then, In Late August 2010, due to the same recession that had cut Wyatt's family's income in half, Wyatt's grant was eliminated. The life saving treatment that had taken him from a shaking, rocking 3 year old in the depths of autism, was suddenly stopped. Wyatt's only hope to continue the next few months of treatment are donations, and donate big. Who could you not cherish this beautiful young man.

After Austism

Would we all love to see what he achieves in the future?


And Just how can you do that? go here: http://www.wyattswayhome.org/ and whatver you were thinking about giving to me, give to Wyatt. He has great donate buttons all over, and charitable tax deductions up to $250 can be done with out a receipt. If you want a receipt for credit over that amount, then you'll have to ask for the social security number of the patient.


 I am not a lawyer. This is not tax law 101. This is what I think I know.

The Patient I Failed

The Patient I Failed

Aug 29, 2008 written by nerdtonurse? | 206 Comments

We've all had patients like this. Patients we get to know, care for, even though we understand they won't be with us for long, but hope that we can help make an easier transition to the next life, unless we think we failed in executing their final wishes.  Unless we feel we've failed at this final task, and that can haunt us. Below is one woman's story that explains it so eloquently.

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She knew what she wanted.

She'd watched her husband of 52 years die on a vent, and followed his wishes to remain a full code. But she knew that was not what she wanted for herself.

So, she wrote a Living Will, had it notarized, gave it to her personal physician, told all her friends and family what she did not want. She wasn't eligible for a DNR, as she was a healthy 89-year-old, but she knew what she wanted.

"I do not wish my heart to be restarted through usage of any
chemical, mechanical or physical intervention..."

Of her 6 children, one fought against her mother's decision, and it was this child, this one desenting voice, who found her mother collapsed on the kitchen floor.

"I do not want any external device to be used to maintain my
respiration if my body is incapable of sustaining it on its
own."

The daughter told EMS her mother was a full code, and they intubated her on the floor of her kitchen. Once at the ER, her heart stopped, CPR was performed, and her heart was shocked back into a beat. Under the hands of those trying to follow the daughter's wishes, the woman's ribs cracked and broke.

"I wish to die a peaceful, natural death."

She was then sent to ICU, where her heart tried to stop 3 more times. Each time, the broken ribs jabbed and ripped into the fragile muscle and skin as CPR was performed. Electricity coursed across her body and her frail heart was restarted a 4th time. By this time, the other children were there, but the act had been done, over and over. No DNR was written, and the Living Will fluttered impotently at the front of the chart.

"I do not wish artificial means of nutrition to be used, such as
nasogastric tubes or a PEG tube."

Her swallowing ability was lost in the storm in her brain that had left her with no voice, no sight, no movement. A scan showed she still had brain activity; she was aware of what was being done to her. Including the PEG tube sank down into her stomach, and the trach in her throat.

"I wish nature to take its course, with only medication to prevent
pain and suffering."

The daughter who wanted the mother to remain a full code also refused to allow narcotics to be given, stating she did not want her mother sedated, since she would "wake up" when the correct medical procedures were performed. Her nurses begged the doctor to write a DNR, and he said, "the family can't get it together, and I'm not getting into the middle of it."

"Allow me the dignity we give to beloved pets. Let me die in peace."

I met her one Tuesday night, and spent that night pouring Jevity into her tube, only to suction it back out. Her legs were cool and mottled, her bowel sounds were non-existant, and her blue eyes stared blindly at a ceiling she could no longer see. The MD refused to terminate feedings, but I held them since there was no digestion taking place. The woman was turned and repositioned every 2 hours, and each time, she moaned and gurgled as her lungs slowly filled with fluid. I whispered my apologies as I did the very things to her she tried so hard to prevent.

Suctioning improved her lung function, but would make her body tremble. Over the next 2 nights, she slowly died, all while the daughter demanded more interventions, and maintained that her mother wanted to be a full code. We had read the Living Will. We knew better.

"Thank you in advance for helping me in the last moments of my life
to have a gentle, peaceful passing."

She had another stroke, and went back to the ICU, where she was coded until there was not enough surviving heart tissue to maintain a beat. Finally her heart was broken.

And so was mine.

Our Family Vacation

The only regret I have about our trip is that we didn't take it sooner. Our family (and I mean my whole family: parents, grandparents, Heather, Allen and their two boys) were in desperate need of vacation, of some sun, relaxation and quality time to come together and bond by having fun, not bond because they've all gotten frantic phone calls saying I've taken some terrible turn for the worse..

So Hooray for a vaca so badly needed and overdue!

 With my hindsighht 20/20 vision, we should have done this earlier, even just two weeks earlier, I would have been in better shape.

But who can ever predict when my cancer will return?

If you're out there, I'd like to speak with you NOW, I'm willing to try just about anything.

 Due to my spreading disease and recovering from my pneumonia last week, I did have some rough days. We arrived Sat. And the Wellingtons were out havin arrived a day early.

 They were at magic kingdom so we said "what the hell!" And joined them for a few fun rides. 

Realizing I tried but couldn't hang, we cut out by 11, and Sunday being a little rainy, I took it to rest while everybody was playing. They all went to MGM studios while I slept and slept, a sleep that only a cancer patient understands.

I did rally for the afternoon.

It was a little heartbreaking having to stay in but I had the rest if the week. 

Mon. and Tues. we went full throttle through Animal Kingdom, Epcot, and Magic.

The package included 7 day park-hopper passes, which we didn't intend on using, because I wanted to go to Universal Studios, but life happens for a reason, I was too exhausted to think of running outside the Disney area, actually, I didn't run all week. 

I stuck straight to my wheelchair with some outings for exercise. I had to conserve that energy. The worst part of the cancer itself is the extreme, overwhelming fatigue. I can fall asleep anytime anywhere. Alongside that comes pain popping up who knows where from my inner space being hijacked, but I got my game face on.

The best thing I've done, that anybody can do with a life threatening diagnosis is to keep living. Do not stop, and cry, and isolate yourself. Do not give up the people, the hobbies and practices you love. When the disease becomes to much and you have to sacrifice something you love, grieve and move on. Find something else that suites your new abilities.

It is important to grieve. It's important to feel bad for yourself, but it's also important to limit these emotions so they don't rule your life. This way you can keep on living. You are living and your disease is a backdrop.

On Weds, our big day, Xander's birthday, even he was a little worn out. HE voted to go to Epcot of all places, because there he and dad could engineer their own roller coaster and ride in a simulator! I can't believe how much he's grown up. He wanted to go through the ride that allowed you to pick options to change your future. He wanted to go on the dinosaur ride that told you all about their past. HE was so much fun.

Then, shockingly, at 2 pm, he wanted out of the theme parks and back to the hotel for relax, pool, and family time.

When I originally told him we were taking this trip I told him we "were going to the happiest place on earth."

HE looked at my funny and said, "Where's that?"

"Disney, silly." I told him playfully, but sensing his disagreement I had to ask "Why, where is your happiest place on earth?"

"Home." He said matter-of-factly, with a shrug and ran off to play. 

That comment won him serious brownie points, I felt like I'd won a million dollars, like I was a superstar mom.

And really, he seemed to enjoy the low key days when we weren't rushing between rides, when we were just hanging out with everybody together, but of course, he enjoyed the rushing days too.

It's taken me 5 days to write this between all the travel, the fatigue, and my impending treatment today, but I couldn't leave you all hanging.

I am supposed to start my bendamycin today. I think my GVHD has come back a little. I have some geographic tongue going on. I also hear rhonchi in he upper lobes of my lungs. I'm calling to ask for a CXR before treatment. I definately have a little sinus infetion, but we'll see what plays out.

I'm nervous starting this new treatment. I think everybody gets nervous with the start of something new and unknown. I'll be needing extra prayers this week. I'm scared of going back to where I can only lie on the couch and sleep, contributing very little. I worry of being a burden to my family. X all ready has serious anxiety. He's saving all  his money for a cell phone that he could use in emergencies.

At first, we said absolutely not, why would any 8 year old need a cell phone, but after his very eloquent explanation explaining how he fears something could happen to me and he wouldn't know. The idea is on the table.

Thank you to all who continue to support me. 

And we're leaving off with some good news for NH patients like me, the vote on HB 440, Requiring that New Hampshire join the lawsuit challenging federal health care reform legislation, and repealing the authority for state implementation of federal health care reform has been postponed until next year!

Hooray, thank you health care warriors!

And surprise, surprise, I'm working on filming a thank-you piece for The American Cancer Society tomorrow during my infusion (Yes, this chemo requires two days of infusions). I'm a little nervous filming the day after treatment. My dad is joining me as my "edit button," in case I start to let out something that should not be told. We'll see what happens. Pray that these works will make a difference and that no one will ever have to suffer like me. 

It's amazing what a person can do when $6000 suddenly appears. For year after year after year when we shouldve been getting a financial break after christmas and taxes, we're hit with, dun-dun-dun... Our deductable. $6000 straight out of our pockets + co-insurance+ the $500 or so monthly to keep insured. Instead this year, that bill can wait. My life can't be postponed anymore trying to keep up, so with a little cost shifting, allowing which ever agency to hold the bill and possibly negotiating a payment plan at 0 percent, I'm on vacation, and we haven't racked up anything near $6000.    When I was in charge of my health care bills, before it almost sent me over the edge, I told the hospital and clinic I would pay them $20 monthly each for the rest of my long healthy life. Well, bills were still enough to make me question my sanity so I let Aunt B, a professional, and my husband, who likes to pay medical debt off, in charge. I try not to even open the bills anymore. My last reminder of my status was an inapropriate nurse trying to discharge me, who upon my debate, stated, "well, your insurance company hasn't paid anything this month, I'm just saying." I caved, but how dare she throw my conscientious patient behavior in my face when she wants me off her books even though my MD, social worker, insurance co., and her agency had agreed to this new trial type of palliative care, whereby a chronically ill cancer patient who still wants to receive chemo can also receive hospice-like treatments, such as IV hydration.   My whole life, my treatments, are a trial,  And guess who could have used IV hydration the week before vaca? The week after I'd been discharged by a woman who was "doing nothing for me.".            Yes, that'd be me. I started with pneumonia. I was given big gun doses of levaquin, inhalers, steroids so I could enjoy myself, but I would have been healthier with that hydration. So with flight, hotel, car, 7 day tickets, meals and souveniers we still haven't hit that $6000 mark.  We're no where near the $1842 nightly DHMC charges just for the room. Imagine the vacation we could have for that. Reminds me of a woman I met on my husband who boasted proudly that she's chosen to take an adventure cruise instead of holing herself up in a nursing home by comparing cost and amnenities. She found. That thecruise provided three great meals, activities, bingo included, housekeeping, entertainment and an on-site nurses to assist with meds and doctors to prescribe then. Who knows, but maybe I'll look into it