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, March 30, 2011

Big Family News: From Dad to Roland

http://www.acscan.org/healthcare Click on Heather and Hillary's story or see below.

Hi All
I have been trying to write an update since we got back from our Disney Vacation But have started several and then couldn't finish. Our Vacation was a wonderful fulfilling time but it seemed when I got on Thunder Road it was just another roller coaster like our life has been. Especially because we did it at night and had no idea what was going to happen. Our week away in the warmth of the Florida sun did help our outlook on life. 

Hillary had chemo the monday and Tuesday we got back. It was a planned 2 day chemo to shrink the lymph node near her Kidney. She had also set up to do a video for the American Cancer Society during her tuesday Chemo. She had made most of the arrangements while on vacation! I have attached the link for the video at the top of the page. I was just surprised when I saw it and was Named Heather and Hillary's video. That Heather is not Hillary's twin sister. I do have some videos from years ago that say Heather and Hillary by Vic Video. Now for the rest of the story.
When we got to the Hospital on tuesday we were met by a film crew of 7 people. We had our favorite nurse Karen in the infusion room. Hillary got all made up and looked the best she had in a while. They filmed everything that went into the preparation and ask her questions for 2 hours while she was getting fluids, then the chemo. I was there to watch so she did not overdue. The producer was so overwhelmed with Hillary's story and how she " spoke so eloquently" that he just kept going. Her answers were a complete description they educated the producer. When the director asked how long does it take to get chemo she thoroughly explained that her blood counts are off a little so we have  to do these test and add potassium and other things to get her blood counts steady before they can even start. To look at the director and the producer after she answered was the most amazing feeling in my life. They were just stunned! It just lead to more information. All 7 members told me that they could not believe how strong an interview they had. Just amazing. After about 3 1/2 hours it was time to move out the hot lights and cameras and let Hillary rest while she finished. Within a hour after they left she was in so much pain and on so much morphine that she was hallucinating and couldn't say a complete sentence. She had push herself to the limit.  We went home and she slept for about 20 hours.
Now this is Hillary and Nothing goes easy. Nancy could tell that the Cancer was growing fast while in Florida. It was noticeable. She had pushed back the treatment so she could enjoy a vacation. The node had grow so much that it affected her Kidney. By Thursday the Kidney was not functioning and the toxins were not getting out of system. They quickly schedule a stent and some extra plumbing to by pass and drain the toxins. Then she started with strongest anti-biotics and the strongest pain killers that Dartmouth had. For 3 days she was in very serious condition. She doesn't remember a thing from tuesday afternoon and only a little about the interview. She had told me on Tuesday that she is very lucky. How's that Hillary? I could have had this attack during vacation and wrecked our Florida trip!! How's that for positive thinking?
So Hillary is getting better again. She is home. We are still not sure if the Kidney will work again. She has a nice small pocket book that she carries her bag in so no one will notice. She is making jewelry now to keep her mind moving without expending a lot of energy. She has a couple more weeks before she does it again. The tumor has shrunk, at least visibly. Hopefully spring will get here and we can watch the flowers and lilacs bloom and life turn back to normal. What ever that is!

I have lots more to tell but it will be another time. I just have to say that her will to live and do all she can inspires me. Never let a day go by that you have regrets. She has proven that you may not control your destiny but you can surely manage it!

Please keep her in your prayers and thoughts. It's working

Vic, Nancy, Patrick and Grace, Heather, Allen, Pierce and Preston, Jon, Xander and Hillary

Also Hillary has a cousin in Canada that was chosen Hero of the week in Canada. Check out his web site if you can understand french

Hello Victor,
2011-03-FABRICE HÉRO-2.wma

I was shure that this would be of interest for you and Hillary.
 
Bonjour,
Our grand son let his hair grow for 2 years to give them to the Cancer Society. He did that for Nicole and one of his father'cousin.
He had a hard time, his school mates teased and maltreated him. They told him to use the girls toilets, he was pushed into the toilets.
He never gave up. He was chosen as the Hero of the week by Radio-Canada.
Roland
 
Fabrice Lamontagne is the son of my daughter Elisabeth Plante and grandson of Rachel St-Pierre.
He will be 12 years old on March 21. He is learning piano .In school he is very active, sometimes too much. 
In first grade he could read. To keep him under control, his teacher had him read stories in the kindergarden.
 
His hair was 14 inches long after being cut,
He is dancing with his cousin Élise. On mother's day with his 3 brothers and grand mother.
 
You can use all you want for Hillary's blog, It was broadcasted through all Canada on the web.
 
Roland
 

American Cancer Society Cancer Action Network: Video: Real Progress in Improving Access to Health Care.

American Cancer Society Cancer Action Network: Video: Real Progress in Improving Access to Health Care.

Tuesday, March 29, 2011

The Recovery Reality


Not for the faint of heart,
my nephrostomy tube and bag

Even in today's ultra-transparent world, I'm still met with misconceptions about recovering from physical set backs, and I don't think I'm alone. 
Whether you're a cancer patient who has had their kidney's fail, or any patient who is suddenly disabled, for all those who have sudden bypass surgeries or even car accidents with rehab, returning to normal is an uphill battle. 
Recovery is often misconstrued as a relaxing event, full of improvement, like a spa treatment. 
Trust me, it's not. It's like boot camp. 
It'd be great if recovery was like the vacation lots of people envision, where we relax, read books, take naps. 
But No, that's not what happens. That'd be ideal. What people forget is that Everything has changed, physically, and on top of that, you've suffered an emotional setback that has to be confronted before healing completely begins. 
For every day as an in-patient in the hospital, it's estimated it takes 3 days to a week of recovery at home. On your average 4 day stay, expect at least 12 days to 3 weeks of healing at home. 
Those days need to be taken seriously! Rest time is huge, and rest doesn't include reading, writing, etc. Truth is, I haven't been healing by reading and studying, I've been healing by sleeping, some exercise, trying to limit activities, but who can do that at home?
Tubing is connected to a stent in my kidney,
 allowing urine to bypass the bladder and
rest the kidney.
Of course I'm sleeping all the time!
 I hopped back into activities and exhausted myself, again.
 X had a virus. Laundry needs to be done. Who can rest in a cluttered household?
 There are birthdays to attend to.
 Life doesn't stop.
 So how can anybody help the healing process? 
Caregivers, be understanding or empathetic. 
Just because your loved one has left the hospital doesn't mean they're back to normal. It will take a while to resume daily activities. Let them take baby steps.
 Know they need rest, nutritious food, and a stress free environment as much as possible. 
Patients, listen to your body. Sleep when you're told to sleep. Park on the couch and watch tv. 
Right Now, I can't even read. I can't watch movies. It's too much attention I don't have.
 I'm tired. I have no attention span. I flit uselessly between projects, failing to accomplish anything.
 I wish I was reading in a hammock sipping lemonade, instead I'm trying to chug 3 liters daily to stimulate my kidneys, unable to think my way out of a bag.

So please, caregivers, when we're sick we're not ourselves. Remember to be patient with us patients and patients, remember to be patient with your loved ones.

Monday, March 28, 2011

My Scapular


I wear a scapular around my ankle.
It's a Christian tradition that's usually worn around the neck, but I've stuck it on my ankle.
I've done this since I know if something were to happen (say cardiac arrest) that piece of fabric would be cut so quick.
And I can't have that.
 I want my scapular.
 According to my beliefs, this gaurantees graces before death: confession, sacrament of the sick and entry into heaven. 
Yes, I said it. 
Everyone who knows about my raggety cloth wants one. 
Who doesn't want a gaurantee into the beauty of the afterlife?
 Still, I wonder if there is something I can do, could have done, or did do to control my disease. 
Where is my cure? Where is my relief? 
Originally, I felt like this was a punishment and sometimes I still do, but I could no longer be suffering for any ills I've done. 
I've suffered too much. 
Now I wonder if I'm carrying a cross for the evils that are raging all over this world. 
There are so many. 
Then I wonder if I'm still contributing to the wrongs. 
Who am I, miss Holier-than-thou, to believe I suffer for a greater good? I wonder what more I have to let go to move on from this disease, and even scarier, what exactly is moving on? Is it death or a cure? Are the successes I hope for just vanity? Is it contributing to my disease? I am happy I can use my disease to hopefully help others. 
I'm accomplishing almost everything I've dreamed of, but how does my disease, my life, my family define me? 
I dreamt last night, or thought, or read, who knows all my levels of consciousness are blending together, that life is only something that can be understood backwards.
So I'll just keep praying for the insight to suffer with blind faith that I am a piece of God's plan. 
Until then, I'll keep wearing my scapular and praying  I'm doing God's work.
I'm heading for another check-up today, testing my blood levels, and probably receiving an infusion.
Happy Monday. Let's hope this week goes better for everybody.

Saturday, March 26, 2011

I couldn't remember the last time I'd written.
I left the blog frustrated, ready to throw my computer, after I tried to finish an already added page for my jewelry and destroyed my existing template I was so happy with.
I have a tendency to believe I have the capacity to do things I can't.
I have delusions of grandeur.
I don't think I would have gotten this far without them.
Either way, my playlist is deleted from the intro and I can't get it to re-paste permanently, not even in the sidebar.
And now, for some reason, the template looks blank.
It's a horrible, terrible, no good very bad day.
I'm moving to Australia.

Luckily, I am still alive and that's what I've gotten online to report.
My check up Thurs. didn't yield the best results.
My creatine, an indicator of kidney function, didn't decrease, which would have showed improvement.
Well, it did, from 1.6 to 1.5.
My goal was for a  0.6.
I've increased that to 0.8.
My providers were hoping for a 1, but I think they've increased that in their heads.
Apparently, the nephrostomy tube and bag are what is allowing my kidneys to rest and improve. One those are removed, my kidney function will probably not improve anymore.
I desperately need my kidneys to function at their greatest capacity.

Please, everybody, stop for a moment, close your eyes and focus. Ask for my kidney function to return, for my blood levels to normalize, and for my creatinine to return to 0.6 by Mon.
I've been trying to drink 3 liters daily. I've gotten at least 2 into my system daily.
If I drink only coconut water I begin to fear overdosing on potassium, so I have drinking options.

I did think my kidneys would be the next organ that tried to fail on me. I thought it could be prevented. I'm trying to help myself in anyway possible. I need them to continue to filter my medications.

I also suffered what could have been Tumor Lysis Syndrome, but more on that later.

X got sick with a virus Thurs. and was out of school both Thurs. and Fri, exhausting me.
This is the pattern after I suffer a severe setback, the following week he'll get legitimately sick, and I'll have to care for him.
I used to call these days "super-mothering." He needed to get over a virus, but he also needed reassurance that he was still the child, that I could still care for him.

I do, but this time it just about killed me. I've  been recovering, lots of sleep.
Thanks for your love and thoughts.  

Thursday, March 24, 2011

Big Thanks

Hooray, Today is a day to Celebrate!
Yesterday was the one year anniversary of The Affordable Health Care Act!
Some benefits of the new health care law, According to a new report released by Families USA, New Hampshire are:

  • 12,200 Medicare beneficiaries received a prescription drug rebate check in 2010 thanks to the new health law
  • 215,300 Medicare beneficiaries  now have access to free preventative health services
  • 16,100 children with pre-existing conditions in our state are now protected under new consumer protections
  • 19,600 small businesses are now eligible for a premium tax credit
Thank you everybody who worked so hard to see these acts come to fruition. Thanks for making our lives a little easier.

I'm still kicking myself for playing with my page design while uremic. The problem with being as sick as I was is that you are in complete denial you are unwell. Now I have to work towards getting things back in order. 
At least I can post.
I'm headed to DHMC to see Dr. Marc or Anna. We'll review my blood tests and see if we can cap the tube and remove the nephrostomy (pee) bag. The stent in my kidney will stay in for at least another week.

Listen to this playlist: baldie26's Playlist



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Wednesday, March 23, 2011

HI

 Ugh, I made it out of the hospital. I made it home, nephrostomy tube and bag in place. 

What does this mean? 

It means I'm peeing out my lower back into a bag, and it doesn't bother me at all. 

This is the first time I've been released from a major procedure and immediately accepted my new body image.

Maybe I can accept this because I've come home with so many tubes so many times feeling absolutely awful, so now, with peeing out an artificial ureter and fatigue as my worst symptoms, the tube doesn't bother me at all. 

Usually, it's weeks or months for me to understand, accept, and incorporate into myself how the new appendage helps me. 

Usually, by the time I no longer need the oxygen tank, the drainage tube, whatever, I've just finally gotten used to the idea and found how to live with it comfortably day and night.

My mom and I quickly came up with a solution about how to hide the evidence of my procedure, as we have so many times before with draining chest tubes, triple lumen catheters,  and even my medi-port, she gave me her new Couch bag that slings over the shoulder and hangs at my hip.

My nephrostomy bag hangs innocently in there, looking more like a fashion statement than an annoyance.

Hiding my procedures started as a way to help X deny what is happening with me.  Early in my hospitalization this past week, when I was uremic and actively sick, we just pinned a towel over the evidence. 

Now, I have a fabulous purse it hangs in that could also hold my meds and money.

Today, I'm exhausted. I'll be headed back to bed quickly.

I'm irritated I tried to alter my blog to create a second page. What the hell was I thinking? I certainly didn't do anything crazy like read the directions. So now my second page has taken over my first page that I'd loved and nurtured for years.

But whatever. I'll deal with that later. Today, I'm sleeping. I'm trying to drink 3 liters daily. I have a follow-up with my heme team tomorrow. 

The plan is to cap the tube and bag, maybe tomorrow, to make sure that I still have the ability to urinate on my own. The stent will remain in my kidney until their is evidence that my chemo has shrunk the tumors enough to allow the passage of urine through the ureter.

Baby steps. Everything is moving step by step, and I'm okay with that. I'm ok with that because I'm here. 

This is how I feel today. 

But this was how I felt, in a moment of clarity, in a moment when I remembered why I was fighting and what I really want:
------Original Message------

As sick as I am, I feel so lucky. I'm lucky I have a close family who I love and understand. They are my priority. They come first, because of this, I'm a fortunate woman. I love them and they love me, unconditionally. This extends to my friends, whom I love like family. I'm so fortunate for all who take care of me. I wish I could recipricate. Their blessings are coming. Whenever they are in need, they'll have their needs provided. Some people never learn this, some people never know their priorities and what's important. What I've been able to learn first through life, then made clear through my disease are my priorities: God/a higher power comes first, family/friends are second, work/productivity is third. Beyond this comes school/learning then hobbies and fun. Through out my disease when I become overwhelmed, I take a step back and evaluate if my actions are in accordance with my priorities. If they are, I will be happy and worry-free. I finally understand why I "shall not want," everything worth living for comes from the heart.

Monday, March 21, 2011

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.







Sunday, March 20, 2011

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.

Saturday, March 19, 2011

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.

Thursday, March 17, 2011

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.

Wednesday, March 16, 2011

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.

Monday, March 14, 2011

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. 

Friday, March 11, 2011

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