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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Saturday, December 31, 2011

Still sick: Happy 2012

I haven't been this ill since my first transplant when mucositis tore out my bowel. Literally, my entire GI tract was one big oozing hole of pain with multitudes of cancres. I've been through lung failure, septicemia, relapses and kidney failures but none other will make you feel as terminally ill than this. I advise avoiding pain at all costs, but if you have to avoid it piece by piece 1. Don't mess with the eyes or teeth 2. Don't hurt the lungs/ability to breathe. The second will make you feel like you're dying. The first is so unbearable you'll want to kill yourself. 3. Do not get an inflammatory bowel issue. It will rule your life. I haven't had a meal in over a month. I'm still dropping weight despite the steroids. I think I need to take at least 60mg daily, but I've been taking 50mg. I've been too sick to call. I tried to get J to before I realized what it would take to get a decent prednisone order on Dec. 31st. But what is the worst about being sick, the most terrible thing is how it tears up your personality, sucking out all the energy for jokes, dancing and laughter. I've been losing my ability to have and be fun. Its hard to initiate when you can barely move. I'm lucky other people have picked it up. Good thing my fam won't let me get away without being silly. Cheers to 2012. The media aren't the messages; the messages are the media.
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Wednesday, December 28, 2011

Coming back

I could feel myself slipping away. I knew I was grasping at life, but I'd become so tired. I couldn't think straight. I wasn't sad. I wasn't angry. And I was sick, so sick trying to find anyway to get better. Its been a long time since I felt so bad. Feeling sick and fading away started almost simultaneously. I collapsed and had to leave my son's bball game. That was weeks ago. I should have known then, but I'd prepared myself to stay healthy like never before: I eat oranges and airborne, have a good diet. None of that changes if my body fails. I think I got sick first, a uti from my stent and a virus, then I needed blood but thought I needed fluids instead. I'd call looking for help but nobody would order blood tests, anything beyond what I requested. I've never seen this. I've never diluted myself with water, getting sicker, when I needed a transfusion. But no orders?! Maybe its Project lean. I'm being rationed, with insurance. I just didn't feel like I have a leader guiding my entire body here. I felt like I was guiding way too much, especially with being so sick. I need a GVHD specialist that will force me to take prednisone to recover, the only thing that brought me back. The adrenals went with the stress of the illness and suddenly, over night, I was sleeping. I couldn't do anything. Then, to make sure I was done for, my graft vs. Host rages in my colon. I've never had gvhd of the bowel. It is evil and miserable. I wouldn't wish it on Hitler. I couldn't cough or vomit or wretch in pain without running to the bathroom. I had taken a colonoscopy prep that produced nothing, but still refused high dose steroids. Thank goodness for all the loved ones and support I have. My dad and grandparents drove me down to NYC in a day, which made a huge difference. Dr. O got the ball rolling with a mini cancerlebrity doctor hissy fit when he couldn't officially order the treatment he wanted me to have (I would have loved to see the big one). He wanted to fire my heme team and hire a new one, which he essentially did. Dr G and A were out that day. O was being told I may have to wait until Jan 3 to get revlomid ordered, which according to A, is more difficult to get than pounds of oxycode, and takes weeks once the application is started. Luckily, Dr. Lansignan and Moody, the Drs O got ahold of, both of whom are very good, had the paperwork moving. With checks and initials in three black boxes provided by the FDA where I swear that I will not become pregnant, ever. I will not even think about having sex without protection during treatment even though I've been menopausal since 2006. That form didn't care that I'd swear off sex for treatment, as long as I didn't even think of babies. Why? Because revlomid started out as the 80s disaster thalidomide, which was originally prescribed for nausea in pregnant woman, but caused severe birth defects: new appendages, flippers, etc. It was a medical disaster, in pregnant women, but there are a lot of disasters in pregnant women that patients like me will gobble up. I think I can start next week. Thankfully, where I thought this was going, the details of what it feels like to slowly fade, what its like when your body is passing away, is not where it went. My steroids are kicking in. In bed, in illness all I could do was worry about the family, especially the kids involved. I could listen to X playing with his friends. I hated not being able to get up and cater to them: say hi, bring out the food and drinks, make sure they have everything even though they can get it themselves. It's a mom thing. All while sick before xmas I was upset I couldn't make x's favorite holiday cookies. Again, thank goodness for mom. I'm so lucky to have the family I have, to keep me uplifted and happy. I'm fortunate that I think I'm going to see X's 9th birthday, even though my family was told I would die before his 4th. Hopefully, maybe, the steroids will help pull out another few years.
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Monday, December 26, 2011

GVHD Got me

I've been listening to the sound of fluid rattling in my lungs each night as I try to battle this awful graft vs host flare up. I'm frothing. It sounds like I'm drowning in my lungs. Worse, my bowels now have involvement. If I eat, everything will flow out of me in liquid form. I've battled this off for week's now. It must be some of the worst suffering known to humanity. Today, my prednisone has been jumped to 40mg. Generally it'd be mg/kg, which would make it about 65 mg to treat my GVHD. I'm desperately hoping that the dose works. I'm finally starting to lose the moon face, the swollen chaos that has been me since 2009, now I'm back to square one. I was thinking yesterday that the body I have or how it looks isn't so important, as long as its working and healthy. I wish I had the healthy strong body! Hopefully I'll get back to it. And I'm loving how the Rachel zoe project treats the oscars like its literally life or death whether the right dress is on. It's the small things.
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Sunday, December 25, 2011

How to Heal like a child

Children are resilient, there is no doubt about that, but did you know they also have cure rates for cancer higher than those enjoyed by adults?

Maybe this is because people are more dedicated to children. No one wants to see a child die. Or Maybe, even, it comes from the children themselves. Their simplicity maybe? They do not have the everyday stresses of life that can impede healing, but still, that's ignorant to say, children have an infinite amount of knowledge.

Or maybe, it's something else. Maybe it's something special children share that adults have lost, like the ability to play, laugh, and forget they're sick when the time is right.
When sick, I try to think like a child, moving to do everything fun physically possible. There is a medication that's helped! Yes, there is hope in pill form with cesamet and marinol. Yes, marijuana helps. Don't stereotype against it. Its well worth the relief.
Thank goodness my cancer comes with some memory loss. I made a decision early to only look forward. There are things I can and can't change, and I can't change anything that's in the past. So I look forward and try to do double duty when I'm well, giving extra TLC when I can. I'm looking forward to more of those times...... After " plan save hillary" is on again. Then I'll drop it for some good timed relaxing and fun like a child.
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Happy Holidays

In all my years of fighting, in over half a decade, I'd never once looked, mostly out of fear at what I would see, what it was like on the other side: the side of my caregivers. Ok, that'd be a lie. I'd think about it just enough to not be a pain in the ass, to be cute, compliant, even funny. Now, time has taken its toll. Making jokes and being easy to chill with are still important, but the people surrounding me, they've selflesslly loved me and keep on loving, despite having to watch their nightmare come true. I don't know why today the reality crept in. The feelings must have been so strong. I had the best christmas ever. It felt unfilled and carefree with excitement. We knew we had enough to enjoy the holiday and each other. I just suddenly saw and felt the words like it's own message. Maybe someone was sending one to me, but it's gone. I'm feeling ill. I'm so excited to have had today with my friends and family.
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Best Xmas Present

My hubby came through in a big way with the presents. He gave me the best present of all: he made me feel beautiful. He made me feel like me again: the youthful, healthy and happy me he married so long ago. much love and merry Christmas.

Saturday, December 24, 2011

I'm a CAUSE! Check it out.

 click on "Place an Order" and then "Shop Now" going on from 12/22/2010 to 1/31/2012. 
I love them! Customize For your STYLE!!

Thank you, thank you, thank you.
My friend started a fundraiser ongoing through January 31st.

It's a Thermal Tote Sale!!
They make amazing gifts: stock up for birthdays and next 
Christmas and to top it off, 100% of the commissions will go 
towards me and traveling to NYC ALOT!!

Goal of $1,000 dollars in sales and 100 totes!!!

 click on "Place an Order" and then "Shop Now" going on from 12/22/2010 to 1/31/2012.

Thank You all for your help ♥ Merry early Christmas, they love me enough to keep me alive!

This is for upcoming treatment I haven't quite disclosed to the world, but will be coming ASAP. It's been difficult to coordinate care with the holidays and my illness, but my PET scan shoes I have cancer in my bones. I need to switch therapies immediately to remolid or thalidomide, and begin researching options 
with Dr. O. I'm lucky he's "only" in NYC, but it's scary I'm going back on the treatment wagon. 

Life is still good. I'm lucky to have the friends and support. Have a very merry Christmas.

Friday, December 23, 2011

Dr oc notes

Dr O to the rescue! The trip to nyc was eventful. I had to get up at 5:30 and leave it 6. I got the front seat first off in the car instead of my grandparents, who weren't jumping at being navigator until we had to get off the highway and find an emergency place where I keeled over. Thank you comfort inn. At 8:30 I was throwing up, sweating. I took immodium, ativan, cesamet, kytril and bennadryl. I slep through the pain. I can guess thAt dad found everythingfine; he did when we went out, but I was a head full of drugged mush anyway. Except for some notes: 2 therapies:1. register me for thalidamide, if not certified call owen, 2. H dc inhibitor clinical trial. Starts feb! Just finished in this disease. Bone cancer: stop sgn; thyroid causing fatigue. Trial temporarily: revlomid? Marc focus on fixing fatigie; revlomid or lenilidomide . Nurses need to start approval for lenlomide. Oral daily 40-50 percent feel better. Keep off chemo as long as possible. Need endocrinologist!!!! Chemo prescribe: lenolidomide 10 mg po qd indefinately/ check TSH- see endocrine. I'm still incredibly intimidated that this is the info I need to convey between doctors- people with degrees at took 6 years longer to get, but I know I can't wait. DHMC is on it. Dr Lansignan, who is very good, has been speaking with him while my doc is out until jan. Everything will go as it should. I'm happy its Christmas.
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Wednesday, December 21, 2011

Tuesday, December 20, 2011


Hi Too all Merry Christmas to all. Hillary has been going to New York University for her new Drug--SGN35. We have been calling it the miracle of 34th street!! The hospital is on 34th and Lexington not far from the empire state building. I have actually gotten very comfortable in the city. I thought this Farm boy would never like Gotham City or the evil empire! She started the new protocol in August and has been doing Very well with it. She did the same treatment at Dartmouth 2 weeks ago. It was the first time Dartmouth used that drug. Another ground breaking 1st for Hillary. She decided that she will switch back to being a Yankee Fan since the treatment in NY worked and Dana-Farbers in Boston Did not!! Since August she has felt the best she had in Years. Her energy had come back. the Treatment every 3 weeks did not have the sickness that chemo had brought so she was feeling good for about 18 of the 21 days between treatments.  She had a PET scan in October. 1 Doctor read it as the cancer being gone but 2 others said it was faint but still near the Kidney. She has been constantly fighting infections and has a weak immune system.Hillary was feeling good enough to take up a job writing articles for a weekly local paper. She writes about 4 articles a week. She is also making jewelry to keep her mind going. She just got notified last week that her Novel was going to be published! I am looking over the contract to see if it is the real deal! (It's not. It's a scam. Boo Tate Publishing!) I have several copies of her first book," z and the cancer Meany". I hope to send a few out if I can find some time. As you could have guessed there is always more to the story. I am always slow to write when things are going well. I guess it is just my nature. I was really starting to believe she had the cure till this week. Hillary is back in the Hospital again. We could not understand much of what she was talking about. She would fall asleep in the middle of a sentence then started sleeping in the middle of a word! They did another pet scan and the cancer has definety returned, It seems to be closer to the liver and the kidney. Her urine " looked like coffee" today.  Holy shit here we go again! The doctors have about as many thoughts about what is going on as she has organs. They think the radiation from 5 years ago may have fried the adrenaline something, the thyroid is not working correctly. They are doing a battery of tests tomorrow.  They have increased her doses of Steroids already.  We are at wits end again. I thought that this Christmas would be nice and smooth this year. .I am doing this update in 2 days because things are moving quickly. Today she had a colonoscopy and a endo--- something. No she was not full of shit!! That stuff they gave her made her dehydrated. They did find an infection in the esophagus. She has been on an antibiotic for a while. We now have an appointment for thursday with the "inventor" of the drug in NY. Dr O has several other treatment ideas that he feels will work. Dartmouth was running out of options. NH just hasn't seen many people like Hillary. Actually I don't think many people have. We are hoping that she will be home for Christmas. That was Xanders Christmas wish 2 years ago!! I think he better wish for it again.I am still confident she will overcome again. She is not invincible but she is darn determined to see Xander grow up. He is playing some mean basketball now. Just the way Hillary used to play. Fast, great Defense and a ball of energy. She has given him a lot of her traits and has taught me a thing or 2 about how tough you can be. I thought I was a tough player in my younger days but I have to say Hillary has me and almost everyone I know beat when it comes to being tough under pressure. She has something to admire.Thanks for all your prayers and thoughts. I was supposed to be getting out Christmas cards but I decided to write a Christmas E mail instead.  Here is to all of you for a very Happy Holy and Merry Christmas and a splendid New Year.Vic Nancy, Grace and Patrick, Allen Heather, Pierce and Preston, Jon, Xander and especially Hillary-

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Monday, December 19, 2011

Scrooge Boerner speaker of the house

I've been up sleepless from steroids hearing that House speaker Boerner (rep) has delayed voting on whether or not bush tax cuts should comtimue past this week. Lack of passage could possible costing middle class families $1000s extra in payroll taxes and cuts in unemployment. Boerner's excuse for his last minute change? He says he's unwilling to vote for only a 2 month extension and revisit the both. Instead, he wants to decide after his holiday break, relaxing comfortably warm and fed while americans everywhere can continue their constant worry. This man pledged his vote to close voting for the house so people would be given for stability, to survive winter and he has the audicity to try to pull a bait and switch so he can hurry home to his comfy, warm home full of food. If this is, in fact, the worst congress ever, we know one of its leaders. Scrooge Boerner himself.
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Sunday, December 18, 2011

Hospital day 2

I thought I was in luick when thee iv team came in, took a look at my arms, and said, "where's good for a long stay?" Psyched he would e so considerate of MY functioning, I slapped both hairless forearms making sure my blue blood vessels came to the surface. An iv in the forearm means I move freely, actively, not a patint tied to the bed. Instead he saw the veins staring from my antecube/ac/behind the elbow. The most obvious of all, generally for emergencies when a hot pack and time isn't on your side, its awful for patients. Movement is restricted. I can't bend my arm wiithout setting off alarms. Ugh, and that's where it is. I was awoken at 5 for blood, rning rounds, vitals, etc and will prob fall asleep. I just wish I knew what this prob was? Addisons? But too late to tell bc they started steroids without question, but steroids have donewonders. My 1/3 of a lung appears clear, but if it doesn't materlized ro a full pnurmonia does that mean no pnuemonia would. Have ever occurred? Doubtful. I'm hoping were predicting these illness better and preventimt its been f years, If I don't feel better should I head to ny mon? Can I call dr. O on a wkend. Of course I can, that doesn't mean I'll get him. Communication in health care is an abhomination. Dr.s from diferent hospitals don't talk, not even a consult summary. Ots left to the patient to find the doc make the request understand and relay back, like a game of telephone. its for the darkages and mistakes can be lethal. I almost died bc of miscommunicationsin the same hospital and the chart to prove it. Dr. G hear said he'd call, regarding many things my PET results, yes my results, Ill have another posting, but only appeared infinitesimally worse, and dr.o has contingency plans. The few past months have been the best in my life in a long time. I could be relied on. I was stable. Plans happened. Luckilly, I can still tell when x is really sick and needz a break. I have time for special tlc mommy care days, which are just as important as medicine to a kid, even if it does mean rescheduling a scan. These little important pieces are always what I hold on to. I'd consider saying I wish my life were different, but that would take for granted the full life.I have. Its just time to hibernate for sick season-until april
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Saturday, December 17, 2011

After weeks of exhaustion to the point I could barely keep my eyes open for more than an hour (not anyway to live a life) and discomfort from everywhere, I'm finally in the hospital. There's been something wrong with me, but nothing so serious that I could put my finger one. When I finally started with a sore throat (viral) than a dry cough that turned in hours to a phlemgy productive cough. I don't mess with my lungs. I certainly don't mess with pneumonia. I was in the hospital in an hour or to getting ready for my vanco and zosyn iv cocktail. Thank goodness I can take those. They're big gun broad spectrum leaving no bacteria unkilled medications. Its great I got them yestErday, before I thought I was really sick (my family thought I hit really sick weeks ago) because today I'm hacking worse. Had I waited I'd been at home miserable, probably with the shakes, not wanting to move. I'd have to get "helped" out of my house. But I'm not. I'm here! And I'll be great for Christmas! Wanted to have jewlery sales but my body decided no. I have lots at The Java Cup, even $5 deals. Check it out and get a great cup of coffee or maybe you can see me sunday? We'll see.
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Thursday, December 15, 2011

Hanging in

I've been just hanging in, not feeling really good anywhere. I always have plans, ideas for the day, and since I've been sick, they never accrue to much more than a nap. I have been writing for the News Review, which I'm enjoying. I've been writing in its weekly publication, and I get some carte blanche to choose what I write, as long as I control myself. I like it mostly, just a few kinks. I'm just excited I can do this. I can meet deadlines. It gets me out of the house. I feel like I'm evolving as a patient, reader, writer
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Tuesday, December 13, 2011

Taking a PET Scan Peek

Like it? Check out cafepress for more
or email moi:
I'm hoping to get healthy enough again to do more activism! It always makes me feel empowered, and I need all the power I can get.
It turns out, I probably had a virus since X stayed home from school today. I was defiantly anemic. I had a kidney infection too. I've been a minor train wreck, but I'm doing pretty well.
I'm getting a PET scan tomorrow partly due to the kidney infection that I shouldn't have.
The thing came out of nowhere!
My last PET scan, the one that looked mostly clean except for a line of nodes around that same right kidney, was read differently among my specialists.
Two out of three agree. . . . it was probably cancer with some regrowth alongside the remission.
I like the third Doc's opinion best so I took his. HE said it was likely a virus.
Since I'm having problems, we're taking a peak tomorrow.
Also Happening tomorrow is NH Executive Councils vote to accept a $333,000 Exchange Planning Grant. Pray, write letters, email, call. It'd be silly to refuse this grant with no federal payback strings attached and no commitment to do anything with the study information in the future.
It's an opportunity to research what would be the best insurance marketplace for NH citizens in the future.
Knowledge is power. I'd snatch this opportunity up.
For more knowledge, There is also an economic summit that is open to the public in Concord this Thurs. Experts are coming in to explain what is necessary within the budget and why. 

Sickies in the house

"This is the best dream ever, because you're in it." X said to me, looking at me with his sick droopy eyes, mouth hanging open and sniffling. I've been sick for the past week,Weds and thurs. I couldn't wake up. I was exhausted. Fri after getting fluids I discovered I wasn't just dehydrated because of my nausea, vomiting, etc., but I needed blood too! Needing transfusions was my primary issue. I've probably needed transfusion in the past. One week after treatment when I start to feel cloudy and sleepy. I'll fall asleep mid convo. Very disturbing. I've been battling towards getting well. I avoided becoming an inpatient yesterday by telling my NPs I had an important basketball game I had to be at: my sons. It was important too. It was x's first time paired against a much bigger boy. His first big sports disappointment. It was also the first time I ever entered a room he was in, seen him making friends (including with big boy) and got the look that said "Puh-lease don't embarass me. Don't even let them know were related.". These were all moments I wanted to be present for and didn't know if I would. I wanted to see x get old enough to go somewhere and not need me. It's a feeling of sadness and success. It shows he's capable of being without me happily if He's capable of socializing and talking to the opposing team easily. I've done some of my job, but he's growing up! Tear. When faced with possibly not having these times since he was young, I've thought of many times I wanted to be his rock, his support, his shoulder to cry on. Even the "bad times" are better, if more important, than no time. I hate hearing when battling whether to be admitted or leave unsafely to enjoy an event that, "this is what we do all this for," which I know my np thinks is soothing, but just reminds me of how temporary she sees this. I disagree. I'm just really thankful that I'm here to be there for days when he's sick. So we can hold each other tight and he'll know the world is safe and secure.
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Sunday, December 11, 2011

The Gratitude Attitude

I think I found a way to dig myself out of the irritable funk I've been in. My angry, pity party has been going on a little long. I've been complaining more than usual. Judging others. Forgetting the great things we have.

It's been over 9 weeks now since the incident that set me off. Jon had a talk with me that I was being curmudgeonly and I agreed.  It was time to pull myself up by my boot straps, get my game face on, and enjoy all I have, which has been my secret to surviving, happily, even when in the worst health imaginable, this whole time.

I call it the gratitude attitude and theorized that being thankful for friends always and the small wonders, being able to walk, stay awake a whole day, warm showers, and fresh fruit, would help me overcome the depression I'd have if I focused on the dark side: what I've lost, what we don't have, etc. etc.

So here's the plan, in article style of course, I need to find someway to get the best of both worlds:

Beat The Blues with the Gratitude Attitude 

If you’ve come to find happiness, start counting your blessings, you’ve found the right place, and now that you found help, keep counting those blessings. Science says it’s good for you.
Science is proving having a gratitude attitude: counting your blessings, looking on the bright side, and overall optimism can revitalize you.
While it may seem like common sense that positive emotions, like gratitude, beget more positive emotions, it’s only been in the last couple years that the study of happiness has seen a surge in popularity.
What’s been discovered is that gratitude is one of humanity's most powerful emotions. It makes you happier and can change your attitude about life, even if it’s dragging yourself out of a funk or helping recover from a divorce, like an emotional reset button.
Robert Emmons, Professor at the University of California, Davis, who pioneered research on the benefits of positive thinking states there are studies showing even pretending to be thankful raises levels of the neurotransmitters associated with pleasure and contentment: serotonin and dopamine, the same commonly chemically copied in  anti-depressants.                                                                                                                        Better than popping a pill, giving thanks is a potent emotion that feeds on itself, much like being victorious, creating a cycle of self-stimulated happiness. Gratitude is the gift that keeps on giving.                                                                                                             Convinced? You should be feeling better all ready with all the good news I’m bringing, but where do you start?                                                                                               1. Cut the complaints. Limit complaints to a certain amount of whines during a set timeframe. For example, give yourself one complaint each morning from getting out of bed to going to lunch. Then work towards getting the gratitude attitude. Eventually stop complaining, replacing whines with happy comments, even if the complaint is there it will be overpowered by the stronger emotion.                                                                       2. Fake It Until You Make It: Prof. Emmons states, “Live as if you feel gratitude and soon the real thing will come.”                                                                                                
3. Remind yourself of things to be grateful for. Keep a log of everything that brings you joy. One major study showed that people who wrote down what they are grateful for felt 25 percent happier after ten weeks than those who did not. They even felt better about their jobs. Another thing to be happy about: studies show logging once a week makes people happier than doing it three times as much.                                                                           
4/5. Make It Visual & Recruit the Family. Create a collage of what you are happiest for, and display it prominently. According to Emmons, a great technique for children is creating a thank-you “tree,” adding post-it note “leaves” every day to acknowledge everything good imaginable, which will also encourage good future behavior too.                     
6. Practice daily acts of gratitude.
When we think of, remember, talk about wonderful and happy moments, we feel uplifted. Keep the feeling by pausing and listing three things you are thankful for and three people to whom you are grateful. If you’re a beginner, it can be done indirectly by finding three things that could be worse.                                             
  7. Be happy in spite of unhappy events
: There are few absolute truths, and one is life isn’t fair. Good thing we can learn to be happy in spite of problems with two steps. First, after an upsetting situation, don’t react. Try to stay calm. Ignore the person. Walk away. Research. Cope however you can without blowing your top. Then, when the urge  to freak out lessens, start listing the things about the situation for which you can feel grateful, even if it’s a lesson learned.                                                                                   
8. Look at your present through the eyes of your future: Your perfect future that is, and imagine only the best, this is your life, your mind, and good creates more good. 
9.Write/Give a Heartfelt Thank You: Spread the joy in a “power thank you.” First, thank whomever specifically for what they did. Next, acknowledge the effort it. Finally, tell them what their actions mean to you. This will help others feel valued and will help you feel better about yourself and life.

Why giving thanks is good for the psyche

Gratitude Chases the Blues Away

Friday, December 9, 2011

Going, Going.....

Gone! what you all just witnessed, folks, was me getting sicker and sicker from anemia, a lck of red bood cells fter therapy which Anna and i thought we ovoided by taking procrit last week. too tired to post now.

Thursday, December 8, 2011

Being sick stinks

I've been so sick. I've slept and slept and slept some more. I ate an orange, turkey slices, and noodles. I had some sips of drinks. All that in 48 hours. Tonight I tried to eat chicken and potatoes j and x made before they left to bball. I had some, but then feeling sicker, went to my room. I started to dry heave, almost vomiting, my whole body tensing violently. When this happened my tummy would act up and I thought I may need to sit on the toilet with my head in a bucket, because the loud vibrations coming from my behind were threatening to let loose. Then sick, miserable and in pain again, I started to cry. I don't know what's wrong with me. I've slept 48 hrs like a coma. I have sweats and chills but no fever. I was considering rhabdomyolysis bc my body aches. Then, I smelled something, and it smelled awful! It wasn't cancer. It wasn't fever. It wasn't bacterial or viral infection. It was just disgusting and where else could it be coming from but me? So I cried some more and hysterically dialed my mom. "I don't know what's wrong with me!" I wailed, "I need you to check on me!" But all she heard was, "I DON'T sob sob sob, some unintelligible statement". And I smelled so bad, I couldn't take it. My own sick smell was going to make me throw up uncontrollably. "What?!" Mom asked. "I need you to check on me" I said and with that I hung up and stuck my nose in an orange to avoid my own stench. Mom came quickly and crawled into bed looking for xmas cartoons as I told my tales of woe when suddenly, mom looked over and snapped, "Nika (my dog), why do you smell so bad? You have awful doggie farts!". It was only then I realized all the sobs about me being so sick I stunk to high heaven were untrue, bc I wasn't alone, my dog had been there stinking up my room! Part of my illness solved! I called dhmc earlier to reschedule my therapy. I'm not having it dec. 22 when it can wait until the 26th, but instead I confessed my illness and bought myself fluids for 9:30 tomorrow. At least I don't stink.
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I did it to myself again. I'll never stop doing it. I felt good. I played hard. I felt like a normal person for one day then the next, with j believing I really may be as healthy as I seem DAILY, he assigned me to do some banking the next day like all our finances would crumble if we didn't take x amount of money from one bank and place it in another. Simple right? No! Not when you need ritalin, morphine, ativan etc to feel normal. Not when you've had over half a decade of treatment and you're sick and exhausted. I did the damn banking because one of the banks doesn't play well with the other online. Then I ran to get some emergency jewelry making supplies at walmart (never ever again I don't buy jewelry stuff there), but in the express check out, that's when my body attacked like a ninja screaming "you! Go home. Go to bed! Now!" I felt it in my weak legs, but worst, I felt it in my bowels, in my stomach, because I can't have one without the other. Then, and I knew it was coming, the hot sweats. Hot flashes so bad that rain just blended in. I managed to make it home, to get to the bathroom and. fall asleep before hitting the couch. But like so many times before, I couldn't wake myself hours later when I needed to get x. I couldn't hold open my eyes. I made an emergency call to mom who found my sis in law to get him. When x got home, I still wasn't waking. I called j, fell asleep on the phone, woke up to "what's wrong with you?!" And j came home to take x to get haircuts. In the meantime, I'd promised x I'd make it to his game so when they got home I managed to eat without falling asleep and choking. I went to the car to go to his game and thought I might die. At the gym I started to cry, which is what happens when I feel awful but want to do something and my friend a. Was trying to care for me even though between tears I was saying I was fine. Her fam was even going to miss their child taking the jmp ball to care for me. I told my parents when they came my dad had to video tape and mom had to take me home then instead of following directions I tried to crawl up in a ball on the gym floor, which was pretty comfortable. My hysterical sick self had decided collapsing there was comfortable enough and no one was going to mess with a determined mom....... Except my own determined parents. I ended up going home and passing out in bed. I woke up this morning and got x to school then fell asleep. Its 11 now and I think I should just keep doing nothing.
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Monday, December 5, 2011

I don't know what is wrong with me, but whatever I do, which is everything I can do to stop people from having to suffer the way I have, it is never enough. I reach a goal and am only satisfied for a moment, because I remember how hard life has been and is still. I can't rest because I want people to be able to fight their illnesses without fear of losing their homes, bankrupting their families, and becoming homeless from foreclosure. I don't want anyone to ever have to choose between food and medications, cut their dosage in half so it extends longer, or go hungry and get weaker and sicker because they feel the helplessness of not knowing how they'll feed their children. I don't want anybody to feel imprisoned in a relationship that is emotionally and physically destructive because they need insurance. I don't want anyone to have to plead through tears with registrars, physicians, pharmacists, secretaries or nurses to access care or get a life saving medication. I don't want anybody to feel forced to accept treatment that they know through scientific evidence is not the best, most effective, safest treatment available because it is all that is available at the hospital their insurance has dictated is in-network. I want it to be self evident that the constitution states we all have the "right to life, liberty and the pursuit of happiness," and with health status being the number one determining factor of happiness in people over 50, know that health care is encompassed within these rights. I want it to be self evident that people are more important than profits and that a country is only as strong as its weakest citizen. I want to be able to relax knowing that even if cancer continues to attack every other man and one in three women, that the safest most effective quality care that gives the greatest chance of survival will be available to everybody despite socioeconomic or insurance status. I want to know that people will no longer die from being turned away at ERs, waiting neglected in waiting rooms, or being treated continually for superficial symptoms that any insured person would have diagnosed as life threatening. I want to be able to find a place to stop this list and rest assured that others will be okay, that someone somewhere will make sure others do not suffer as I have, even if it's through a miracle from the hand of God. But until then, until that time comes when people regard people as people regardless of health status, I can't relax. I can't stop fighting or praying that someday these simple wishes for people to care for other people more than all else will come true.
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My first ponytail in 6 years!

All the fighting and irritation with my hair has been worth it! I've finally grown it into a ponytale!

Sunday, December 4, 2011

Hosp budget/ therapy pilot

To understand the dire situation hospitals are facing, it's important to understand the process that started the whirlwind decline. This past July, the NH budget passed within which was included new stipulations for the 5.5 percent bed tax hospitals are required to pay. in previous years, the 5.5 percent was given back to the hospital allowing for a small safety net of an operating profit; and thereby, the ability to treat the uninsured or undercompensated paients with medicaid or medicare without facing bankruptcy. However, this years budget opted not to return the 5.5 percent tax instead diverting it to other, areas of the budget, such as infrastracturee and energy improvements, turning what had been a small opporating profit into millions of dollars in uncompensated care, which almost immediatly began effecting patient care through longer wait times, etc. Oddly, Smaller critical access hospitals in the state were noy affected. Criticall access hospitals eccept difficult patients but my not be able to give the treatmean According to Dawn more lay offs are set to occur this week at the health care giant."People fly here from Bermuda for treatment or drive 8 hours from Maine for Bone Marrow Transplants, which aren't offered in that state."*** trauma focused theray pilot program. In claremont. Rosenburgs and dan ferara involved. Across the state at community mental health centers therapists are being trained to provide trauma focused effective therapy through a state provided grant for the pilor program.
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X's Christmas Wish Miracle

This is one of my favorite stories. Some of you loyal readers may have heard it in pieces before, but it 'tis the season to remember magic exists, wishes come true, and miracles are real.

The first time I heard the wish was in April, a full eight months before Christmas, when most children have forgotten that Santa is watching and are busy planning their April vacation.
Christmas two years ago when X made his lifesaving wish.

My Son, X, and I were sitting around on the floor, playing games, when X said seriously, "Mom, for Christmas, I am going to ask Santa to make you better."

"WHAT?!" I gasped, shocked.

“Where did this come from?!” I thought to myself, and worse, “How does my son know that he needs to ask for a miracle for me to be healthy?”

I thought we had done well hiding the fact my Hodgkin’s Lymphoma was “incurable,” and therefore, “terminal,” but as so many parents do, I had underestimated what my son understood.

"I don't want toys..." He continued, nonchalantly, looking down at the toy he was playing with, "I just want you better."

Then the tears started to well up, and my heart started to break. He was willing, at the tender age of six, to give up all the toys in the world to ask for me to be healthy.

I finally got myself together to talk to him.

"You know you don't have to wait for Christmas to ask." I told him.

"You don't?!" He yelled, looking up quickly with his big brown eyes staring, curiously, like I had the answer to the all the world’s problems.

"No, you don't have to wait,” I said, “because God is Santa's boss. He is around all the time. Santa is a helper for one night."

"So we can start writing letters NOW?!" X screamed delightfully, half asking and half demanding.

"Yes, we can write letters, and we can pray every night..." I said, trailing off, dreamily, thinking about the possibility of my own mortality, and how it was affecting my little man.

Xander cut right into my thoughts, ready to start his letter to Santa, asking for me to be healthy, and praying for me to get better.

After his April request, I constantly did the math to see if I could be healthy for Christmas.

In August, I started a round of chemotherapy that required infusions every Monday for two to three months with the guarantee that I would be sick and hospitalized during active treatment, but possibly putting me in remission for November and the holiday season.

Our 2011 Family Holiday Picture.
However, instead of getting better with treatment, I got worse. My lungs began to fail in August, and I underwent multiple biopsies and surgery to diagnose the problem. By the end of November, I was undiagnosed, oxygen dependent, relying only on a third of a lung to survive, and at 26 years old, instead of a miracle, I was thinking about stopping my medications and allowing nature to take its course.

But in the back of my mind I kept thinking about X’s Christmas wish. Angrily, I wondered how God could do this to a child that put all his faith in him and Santa Claus asking for one selfless thing for Christmas.

But X never got angry. He never gave up hope. Instead, he kept reminding me that I’d be better for Christmas.

On Dec. 5th I was finally diagnosed with Bronchiolitis Obliterans, a life threatening complication of bone marrow transplantation scarier than cancer itself.

On Dec. 22, sicker than I’d ever been, I was wheeled into my Doctor’s office. Seeing the state I was in, he recommended immediate hospitalization. Instead, I burst out crying thinking I could miss my last Christmas with my family and asked for prednisone.

Steroids are a double-edged sword in cancer care. Prednisone would alleviate the inflammation causing my lung failure, but it also would almost ensure my cancer would return.

The answer was easy. I opted for steroids.

The prednisone worked like a miracle. I could eat for the first time in months. I could play games with X. We were able to do all our Christmas traditions together, and X saw that with his determined faith his Christmas wish had come true.

It’s been two years now since X made his Christmas wish. He still remembers all the letters to Santa and prayers to God he said for me to get better, but if he ever starts to forget or lose faith, I’m still here to remind him that God and Santa grant miracles, especially for Christmas.

Saturday, December 3, 2011

Normal treatment weekend day

I had a normal trtmnt wkend day. I woKe up. Played around. Made sure c and x were fed and ready for bball practice by 8. I recreated my jewelry displays since a store wanted them all (go me!! Cheer on the hillary). Then j and x got home with our friend's daughter who still trusts us with her kids even though poor x got forgotten at school thurs. I thought j had taken care of it. J thought since I'd be home from treatment, I'd get him. Oopsy, we forgot our child. Good thing we live in our small community where the teachers joked with him while j scurried out of work. We're so fortunate to be surrounded by good people. Instead of leaving hysterical he left saying he needed to stay to make coffee in the morning. I didn't wake up for 24 hours. Today, I tried to behave "normally" I went to one of those scentsy and 31 parties. Its been a long time since I charged out into the world, alone, to a party even mid afternoon. Then everyone seemed to have other parties scheduled afterwards: ugly sweater parties, kids birthdays, 30th bdays, and I began to wonder where the hell I'd been that ugly sweater parties had become normal. Then I remembered, I've been forcibly turned into a hermit out of fear for my life. Luckily I've been perfectly content in my bubble, but I used to be such a social creature. Now I'm fulfilled by my friends, writing, family and facebook. I think, hope, maybe, that this is just a normal part of adulthood. Though I'm pretty confident, I spent my 20s and all the maturing is was supposed to do, in confinement. Maybe I was just resting up for mt 30s? Who knows, but I plan to find the energy to go to another cheesy women party, discovery toys, tomorrow. Next week, I'm thinking sunday, maybe I'll have a jewelry party of my own for the holidays next week. Maybe. Anyone want an invite? I have gorgeous pieces.
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Good am

I did it again. I screwed up my sleep schedule. After getting therapy at noon yesterday I was put into such a deep sleep from my ativan/benadryl premeds that jon couldn't even wake me up to take my bedtime medicine. Clearly I woke up wanting to scream in pain, every muscle or joint screamed don't ever do that again! Boo I'm not sure what I can do to avoid it next time. Those meds are too powerful. I woke up this am intending to sleep but my rn from yesterday called a little nervous asking if I could get back asap for a procrit shot that was overlooked. So hush hush mom becky and I hurred. Then we went to Joannes, because I luv it amd can't stay away, especially with cpoupons that make it almost free. I'm getting sleepy Maybe it really is time to sleep. Blessings, hill
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Friday, December 2, 2011

I've been missing everybody and I'm back.

Upcycled snapple cap pendants $10. Any picture
 Go to, comment or email to get it in time for the holidays
Oh, blogger friends, who I've missed you among my frenzied endeavors.
I started a job that I went crazy with. I don't know how to be anything other than an over achiever, but I'm cutting my work down to only 4 or 5  stories a week. NO MORE I TELL YOU.
This way I can focus on the things that make me happy and relax: hanging out with X, writing whatever I want to all of you, creating pretty jewelry, WHICH CAN NOW BE FOUND AT THE S. ACWORTH STORE!
We threw a surprise 55th bday for Dad the weekend before thanksgiving. Then thanksgiving was fun chaos has the family was all in town.
That weekend the men scrambled to finish my bros foundation before the snow came so they'll have a place to live this winter.
My cuz, Steph, is getting married so we've been busy dreaming up the best looks and places for her dream wedding.
I've also been talking a lot to a 27 year old friend who has been recently diagnosed with osteosarcoma of the spine! She's headed to Mass. General for weeks of radiation before surgery and chemotherapy. She's hoping her 3 kids and moth-in-law can move with her. Please say prayers so she can continue to be a mom with she fights this horrible disease.
Still here from cleaning out my closet. Classic coach bag,
be the envy of friends $65 or Best offer
Yesterday I had my antibody therapy, which drugged me to high heaven to the point i couldn't function to get X to school today, but my plans to sleep were foiled when I was told my procrit shot (to increase my Red blod cells and hopefully give me some energy) was forgotten, so  I had to make the 40 min. trek back up with my mom-in-law, where again, I didn't sleep. I tried to nod off on the way home but couldn't. Then steph was waiting at the house to go get her gorgeous engagement ring sized. I' so excited for the blushing bride.
Beautiful silver pendant with your choice of charm waiting
for your favorite picture. $20 gets custom piece with your choice
of color bead or charm. 
I've all ready committed to picking up x, who got forgotten about at school yesterday as I was unconscious from my medications and thought Jon had it taken care of, but obviously we'd forgot to communicate. Oops. The school called J at work to come get him. I felt so bad for my little man, being forgotten in the chaos.
Then after I get X we're going to get C, his cousin and best friend, to start the Fri. night party. The first Fri of every month the GCC holds a fundraiser party for 9-14 year olds. $5 each gets them in for a dance, live band, flashing lights, friends, pool, even video games like guitar hero. They're excited to be going.
Comes in gorgeous gold fill too. Pick your picture and a
charm, again only $20. Extra may apply for charms.
email for your holiday creation
We're excited to see them going.
I'm glad I'm being forced to calm down my writing. I don'tknow how to work without being a supper over achievor. Limits are good so I have time to do pieces for the post.
Found another bag hiding in the closet,
classic, large 14"Lx15.5"W
Louis Vuitton. Fabulous. $150 OBO
I've submitted one recently. It's an innovative idea in a column. I haven't heard much, but I'm hoping it's being discussed. I plan onsubmitting X's Christmas Miracle and "Can Communication Cure Health Care?" but all this comes along with the Christmas season, Christmatizing, wrapping, and making pretty things. I have been approached to be teach jewelry making classes at Joanne's in Leb, but I'm not sure. I'd love to have  an upcycled display at TLC (a consignment shop on tremont square) in Claremont, but my display stuff went with my jewelry to S. Acworth. Hopefully I'll be successful this season. I'm so excited I feel well enough to do all of this, and it's all thanks to the love, prayers, and support you have all given me through the years. Keep it coming. I wouldn't be wear I am without you. Much love,