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, November 30, 2011

Thank you Lorraine for reminding me why I do what I do. I'd forgotten that life isn't really about me. I'd forgotten that the people who need me most are the ones who can least afford it. I'd forgotten that I would day dream in junior high about finding the cure for AIDs and somehow giving away the chemical formula for free so any chemist on any continent could create it cheaply instead of having cures owned and lives held hostage for profits. Back then, I imagined getting it published in newspapers throughout the globe, but knew the internet, in its rudimentary state, was my best hope for information dissemination. Even though I'm not sharing chemical recipes, I think sharing coping mechanisms, new therapies and innovative doctors information accomplishes the same thing. I do believe communication can cure a lot of health care's woes, and I'm still on a mission to connect people to others so we can guide and support each other. I forgot how much better it feels to give than to receive.
Sent from my Verizon Wireless BlackBerry

Monday, November 28, 2011

Cyber Monday Sale: Customized Etsy Goods

In the spirit of Christmas, why not buy beautiful gifts that do double duty: helping those in need and making a great present.

I'm having a sale on my etsy site, right now! Get 15% off your entire order by entering BLCKFRI in the promo box.

Some of my new goods include customizable upcycled pendants made from snapple caps, art, pottery.

If the upcycled pendant isn't your thing, I'm also doing customized pendants with any picture you want.

Your picture can be placed in a circle pendant and then overlaid with resin to last a lifetime. Charms are also available alongside the pieces. Choose from silver or gold fill. The only limits are your imagination, and well, my inventory.

And good luck finding these babies for less: Upcycled Pre-made Pendants are $10, customized are $15 and for the more professional look, special for the holidays, it's $20 with a basic charm (cancer ribbon, words like hope, create, imagine, or angels a simple stone in just about any color). Other charm options can be discussed at ordering, such as gold or tiffany blue 4-leaf clovers, a horseshoe, gold owl. With the cost negotiable. Just send me a note. 

Sunday, November 27, 2011

Plan X: I've gotten a job

My beautiful twin sister, Heather, with her very handsome family,
husband Allen holding Preston and Pierce.
I feel like I've been cheating on my blog with my new J-O-B. When I have to do things like interviews and make deadlines it's not as easy to sit and write about myself.

I'd hoped to find a way to make blogging pay, And it has in exposure with some great opportunities. I've accomplished goals that I never thought I would survive to even try for.

But as far as feeding my family and giving me the peace of mind I so desperately needed, it hasn't done that.

 It hasn't allowed me to go to the grocery store without a handful of coupons and a gift card from a sympathetic loved one (aka known as readers I've met through here ;)) and go crazy buying the healthy food my body wants. I naively thought at one point that if I just let people know how difficult surviving was financially with a disease that people would help fill in the blanks, but that just didn't happen.

There are too many rumors and myths about reimbursements that even some of my former closest friends believe.

For example, I do get to write-off all of my expenses, but that doesn't mean I ever see any of that money back. Instead, I opt to not have any taxes taken out of my social security check so I can have the money immediately. I, essentially, pay those taxes with my write-offs.

We still do not receive any form of entitlements other than social security, such as food stamps that many childless, healthy workers receive. My SSDI is also less than my medical expenses every year. By definition, this means I am bankrupt and will never recover financially. If we get a $1000 back from the government we're extremely lucky, but that's quickly eaten up by more health care costs.

My fabulous family, Jon and Xander.
And as much as I love The Huffington Post, I'm not paid for those articles either. I'm a lowly blogger who does it for the exposure and excitement of being published. Maybe, someday, I'll find a way to make it pay, especially since writing is really the ONLY thing I can do professionally.

I was offered a job as a jewelry making instructor! But JoAnnes in Lebanon is too far away and my health still too fragile to commit to a certain time and date to teach closer.

When I was younger, I told myself I'd never, ever throw those crazy tupperware parties. I didn't understand them. I Didn't see the incentive.

Now, I realize I was just born to professional parents who had options to work instead.

I don't like the complaining, whining tone this post is taking. It wasn't supposed to be like this. I guess these thoughts have been weighing heavily on me for a while now. I had an awful incident recently where someone meant to care for me took advantage of me financially and my need to travel, but ditching the chick wasn't all I needed.

It was time for plan X, since Y has been over a long time now, and get a job while sick.

Since treatment has ruined my body and therefore the option for me to do barely legal porn (just kidding) I started thinking about a job.

Again, the big guy came through with a sign. I dropped the paper I was reading and it opened to a big advertisement for freelance writers in The Claremont Area for The News Review, which I'm so excited is working out really well.
The two that started it all: Mom and Dad Nancy and Vic
with the grand-kids and our grand-dog, Nika. 

My job has given me the peace of mind. I was able to do some Christmas shopping, obviously during sale time because I'm frugal and that's just how it is, but it wasn't with the guilt of thinking I'd leverage our ability to pay our taxes or eat.

SSDI is also trying a new program that, gasp, allows sick people to work without immediately cutting off benefits! Not a surprise now since SS has tightened their practices, previously they threw SSDI at just about anybody, and since I submitted tax forms to work, I was sent an offer to join recently.

I can now make up to $12,000 a year without being penalized. Previously it was $10,000 with immediate cut-off for making more.

This was a serious reason for many disabled people who wanted to work but couldn't do their previous profession or even part-time to not work at all.

Now, if I make over $12,000 (not likely) my benefit is decreased by $1 for every $2 I make over the amount. I think this is a great start to overhauling the Social Security system without affecting needed benefits.

Something needs to be done soon without being drastic. If SS had the restrictions health insurance companies do it'd be a for-profit business.

I'm excited we may be headed for some good times. Hopefully I can keep you all updated. If not, at the very least, I'll submit my columns to you. I don't have the benefit of writing a general article yet, but I do get to pick topics in the news.

I'm always in need of ideas so comment or facebook me.

The whole family together for the holidays. 
And I'm happy to report that we're healthy and
happy even though we still have finance charges that top what I bring home in a week, We're going to have a very merry Christmas this year.

Wednesday, November 23, 2011

Vtech Vsmile IMG00184-20111123-1240.jpg

Great Present: Like New Vtech Vsmile Smart toy with controller. $25 OBO Games $5 each Alphabet Park Adventure, Finding Nemo Ocean Adventure, Blue's Clues. Take all for $35. Call Hillary at 603-542-5064.

Fisherprice smart cycle Like new IMG00183-20111123-1235.jpg

Great present: Fisher price smart cycle, Like new, stationary bike for exercising and learning, comes with learning adventure game $50 OBO call 603-542-064

Tuesday, November 22, 2011

Working while sick

After six years of battling cancer through two transplants, countless chemotherapies, surgeries, trial drugs and being saved from losing my insurance completely when Obamacare made insurance caps illegal, I've finally made it to the point where I need to ..... Get a job. Yes, even though I'm currently in treatment, so disabled sitting and working for more than two hours results in exhaustion, and limitations include avoiding people due to a compromised immune system, none of that changes that years of treatment is bankrupting my family. The constant stress of living paycheck to paycheck with weeks frequently in the red has worn on my family almost as much as the constant worry that I'll succumb to my disease. Most people don't go to work when they have a cold, how am I supposed to work with cancer? I'm disgruntled about being forced to work when I should be sick at home, recovering or enjoying the time I have with family and friends, but I'm even more bitter about why I'm too poor to live a comfortable life and battle my disease. Surviving on social security disability without so much as a cost of living increase in the past five years while congress instead voted itself raises, granted themselves frequent vacations and have not suffered any cuts to their retirement or "cadillac" healthcare plans has made me bitter. Allowing members of congress to be fully vested in taxpayer paid retirement plans that include lifelong health care immediately upon entering office, with no possibility of losing these benefits even if they leave disgraced and convicted of perjury, is wrong, especially when it's at the expense of the Americans they serve. I am one of those Americans. Congress, in governing itself, has given itself too much power causing the vast disparity between the rich and poor, and created systems that allow the rich to get richer often by whipping the backs of hard working middle americans who fall on hard times essentially punishing those who choose to contribute by either not making enough to join the elite or by making too much to be given assistance. I'm not the first, patient that has been forced to work during treatment. I've actually been fortunate to have stayed home for so long. Many people take little or no time off to fight their cancer due to common employer practices that include reducing hours so the employer is no longer obligated to pay for health insurance. Yes, the stories about human resources entering the hospital room of an employee patient to announce they no longer have health insurance is true. Talk about a kick when you're down. As if losing your health insurance at the start of a marathon battle with illness isn't bad enough, this action is sometimes done retroactively, leaving a person who thought they had insurance when having surgery or beginning chemotherapy with huge medical bills. And yes, this is all legal. It's practiced under the idea that business is business and is not personal. Of course, it's not personal until it happens to you. I'd love to stay and ramble my frustrations, but I have to go work now.
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Monday, November 21, 2011

PS- I love you: Creating A Digital Farewell File

When I found out I was terminally ill, the idea of leaving behind a legacy weighed on me, but not as heavily as the idea that I could leave behind a child with little or no memories of me and the values I had dreamed of instilling in him. I’d dreamed of the advice I would give him through out his life.  I thought of the times I would sit and rub his back to comfort him and could not be there. The largest legacy on my mind was how I could still influence and love him even if something was to happen.

Luckily, the technology boom that has put a smart phone in just about every teenagers’ pocket has also equipped most families with a camera and video recorder that with some simple teaching is easy enough for the worst neophyte to create collages of memories.  Having a phone/camera/video recorder in one makes catching pictures or snippets of conversation anywhere easy, all pieces that can be a priceless part of the multimedia feel you may want your digital memory file to have.

Now, there was no need for me to buy the expensive, cute packaged books that didn’t quite convey what I wanted to say or that had no special sentimental meaning. I could videotape myself reading our special books: Alexander and The Horrible, Terrible, No-Good Very Bad Day, which my son insists was written especially for him, and The Little Train That Could.  Those stories were our favorites, and I was happy to have video that was a special part of our relationship, just like most people would want to do leaving their own legacy.

Very simple physically to start, far more difficult emotionally, I created a folder on my desktop marked “Just-in-case.”

Had I had a smart-phone at the time or very little energy, I may have created a free email account and sent everything I wanted to include there, from videos to emails and pictures, making sure to leave the account name and password to a loved one.

Instead, I launched into a multimedia legacy project. I created subfolder’s in the “Just in Case” folder for each individual I wanted to reach out to: my parents, my husband, my siblings, niece’s and nephews, best friends, and obviously, my son.

Email accounts also offer the option of creating folders for specific individuals or purposes, which can be filled as easily as clicking and dragging the message to the appropriate place.

By doing this, every time a picture is loaded onto the computer or something is written I could easily save it in the memory file, and it only took one external drive to back it up. In the future though, loading each individual’s memory file onto a thumb drive will be easy, and then they’ll have copies of our times together forever.

I had imagined typing each letter and putting it together for its recipient with a few important memories in a card nicely labeled with the occasion it was supposed to be opened on, and I didn’t limit myself to birthdays or holidays. I imagined every time I would want to be there that I may not: losing a big game/disappointments, the first crush, or when he simply felt all alone in the world like nobody understood.
I wrote these ideas with a lump in my throat, and still do. Thinking about this is difficult, coming to terms with everything you may miss is devastating.

This is why after creating my files, had they not been virtual, they would have sat collecting dust in the corner. I wasn’t ready emotionally to write them. If you are, that is wonderful. If you’re not, and I worried I wouldn’t be in time, I was lucky to find a friend in Carol Renzelmen, MS Ed.

Any friend, support person, counselor, or volunteer at the hospital could help, but I chose to work with a professional.

Having worked as a freelance writer for most of her adult career, Carol had recently  taken classes to volunteer at a local hospice to assist in the combining of her two talents of writing and nurturing into a much needed niche: writing farewell letters.

Carol, who you can find at, is on a mission to “promote healing and connections through the written word” by helping people leave a legacy of words allowing them to let go knowing that the words that matter most have been said.

She was the push I needed to actually begin my journey, helping me say the things I wanted to say but hadn’t been able to. In fact, she was able to have the clarity and perspective I couldn’t through my flood of emotions that gave me crazed, hysterical writer’s block. Even as a writer myself, putting the words in black and white was too difficult.

Her gentle tactic in assisting in writing our letters included sitting with me, drinking tea and talking about the good times, the great memories that made me laugh from thinking of them, as well as asking the hard questions like, “What’s the most important thing you want to say?”

I wanted X to know that I was always with him, that I loved him, that love transcends all and that I would always be with him. I wanted him to remember his priorities and their order: God, family, school, sports, hobbies. I also wanted him to have letters to comfort him during difficult times that I knew I would miss: the first big game loss, getting dumped, not making the team.

In fact, if I wasn’t a writer myself, I wouldn’t have needed to write anything. Carol could do it all for me.

This is the route I chose to take to remain in my child’s life after I was gone. The file is there. Even some memories and blank cards are mixed in, stored all together in one box, which my letter will direct him and my loved ones too just in case, but every person’s desire, vision, and memories are as different as the lives we have lived. It’s important to find what works for you and make it happen, even if it’s with a box, pens, papers, and envelops written in private with a box of tissues.

Stop the Meanie Shirts

I know, I know, I know, it's been a while since I've posted. I'm trying to find a balance between my freelance writing, family, and blogging. I started officially writing almost 4 weeks ago now, and I spent the last week planning covert op 55 otherwise known as my father's surprise 55th birthday party.

But just in time for the Christmas season, my friend Chris has created Z and the Cancer Meanie Merchandise!! Now, head to cafe press and you can get your own shirt featuring the cover art or Stop the Meanie: Find a Cure Shirts. There are bumper stickers, magnets, and buttons too.

I love technology. I feel like such a professional!

Sunday, November 20, 2011

STOP: Take a moment to breathe

It's time to stop. Take more than a second. Take a minute. Take 30 or 60 minutes. You know you need it from running your over scheduled, exhaustion inducing rat race life and consider what it is you really want in or out of life. Is what you're doing what you want to do? Do your actions show who you are and who you want to be? The holidays, Christmas time, anytime studies have shown that how we see ourselves often is very different than how we actually are suggesting that the view we have of our true ideal self, who we want to be, is being drowned out by the humdrum of everyday life. Recent research by notorious naturopath Dr. Weil suggests that this also leads to depression. It's no wonder people are feeling disenfranchised all over. The murmur of technology: music blaring, tv in the backgrounds, internet surfing on the side has distracted from what is really us, replacing it instead with a computer generated, photo shopped reality. The Joneses we compare ourselves to are no longer our neighbors; they're the Kardashians, because tv has brought them into our lives but our livingrooms. No wonder technology appears to have lead to an increase in depression, it has drowned out the whisper of our inner voice, taken time away from thinking and learning about who we really are, not just on the inside, but in relation to the world, especially when that world we're relating to is an artificially perfected reality. So what's a person to do? Rejecting technology outright is a little extreme. It's important to learn how to live in harmony with your environment. I suggest remembering what you receive is a reflection of you. If you want a close group of loyal friends be that loyal giving friend you've always wanted. Knowing what you want overtime you will get what you want it just may take a little bit of quiet soul searching.
Sent from my Verizon Wireless BlackBerry

Saturday, November 19, 2011


Ara Cardew shows Alexander Ford and Eli Smith how to use the potter's wheel at Saturday's West Claremont Center for the Arts Demonstration.

Friday, November 18, 2011

Hosw to Move with Your Doctor/ or Dr. O is on the move!

Here's to all the hodgers who want to keep track of the leading Doctors Stateside: Dr. Owen O'Connor is moving back to Columbia-Pres. He believes this institute has created a winning balance of research and treatments that will allow him to bring more drugs to market for us as quickly as possible. If you'd like to follow him, simply send him an email. This is the copy of the one I sent.For everybody else, This similar form letter to the right people can help you follow a doctor to any institution, of course, if the insurance companies' okay it first. Hi Dr. O or whoever I may be speaking to, My name is Hillary StPierre, DOB 8/16/82, SS ### and I've been seeing Dr.o every 3 weeks for adcentris treatment. I would like to go with him to columbia-pres. I'm getting my next dose near home @ Dartmouth. However, my last PET showed mixed/questionable results. It's our plan to be treated locally, have my kidney infection heal and get a repeat scan, probably 2 weeks after my Dec. 19 therapy, which would have us needing to meet early in the new year. If this is acceptable, please schedule my next appointment on a Thurs as you see fit. If you're no longer treating patients on this day, again, call and we'll arrange an appt. (***)***-****. Thanks and happy holidays!!! Hillary. It's important when contacting health professionals to understand what they will need to help you. I always introduce myelf like they have no idea who I am, it's safer, and give info so they can look me up in the system. Your name, spell it if it's weird, date of birth, last for digits of your social security #. Those are very helpful. It's like google key works for your health records. At least then, you know theyr familiarizing and you won't get lost. Then If you don't hear from theinstitution by the end of the stated timeline. Call them. Call them whenever you have a question, you're the consumer. Use those benefits, but definately, call if you feel you're getting forgotten. You may be. Hospital communication is improving but slowly. Follow your gut and don't fear being pushy. Fight like your life depends on it.
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Thursday, November 17, 2011

Striaght from the hospital

At least I got some good news. My weight is down to 143! Mb I'll be able to be active and get vack in shape.


"Doing well," "feeling great," "looking good," these are all what I call "relative statements," Meaning they're all made in relation to the events, past and present, involving the specific person the statements are directed at. For most people "doing well" maybe a cozy, healthy happy financial secure existence. Maybe they got that promotion they've been working towards, bought a new car, or their child aced the spelling bee. For others, say a single drug addicted mother, "doing well" may mean getting clean, maintaining a job, finding a great roach free apartment and getting their kid back from CPS. You see, it's all relative to the person and their experiences. However, many of us still have a tendency to jump to black and white conclusions, such as "Hill's doing well! She's all better. Her treatments put her in remission. Life is good!" I wish this was the case. My "doing well" and "looking great" come in comparison to years of weight fluctuations from 90 lbs. To 155lbs, going into complete respiratory failure, nearly dying due to clotting issues and having my entire immune system inexplicably fail. So yes, I am doing well. I'm doing great. I'm managing to maintain a freelance job. I've been able to get x to and from school and play with him after whether it be yu-gi-oh, video games, basketball or baseball. I've been planning and making dinners. I even decorated for thanksgiving for the first time in years!! I'm so excited, but I don't want to get lured into a false sense of security. My body and my immune system will never be great again. I will suffer setbacks. I don't want people to think these are the end of the world, but the truth is, I'm still in treatment and at risk for serious complications. For example, last night my urine was neon yellow again leading me to wonder if my kidney infection came back despite the cipro I've been taking, but I just went to bed. I woke up nauseas, and feeling tired, but I'm always nauseas. Tired is pretty much status quo too. But 5 min. Before I had to get x to school all my anti-nausea interventions had failed and I began to throw up violently. By violently I mean unrelenting thowing up. Poor x ran to the phone to start dialing up family members. FYI- if you get a call from x and can't speak to me. You need to come check on me. He won't say he's scared. I think the words are too much. We called J at work and he rushed home to get x to school all while x is informing him he needs to stay home with me. I chose to go to the hospital. I'm having a lot of troublle writing now with all the meds ive taken. Sleepy time
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Tuesday, November 15, 2011


Something crazy happened this morning, not as soon as I woke up, after my medications kicked in of course, but pretty close to it. I looked in the mirror and saw my dimple!! My dimple is coming back. My face is slowly becoming less cushionoid or round, swollen, and fat from the steroids. I used to have 2 dimples, but they've been mia since Dec. 2009. I can't believe it's been 2 years since my lungs started to fail, since bronchiolitis obliterans nearly killed me. I would have died Dec. 2 years ago had x not prayed to God and Santa that I get healthy. It's a miracle. I accepted steroids to survive and help out the miracle. It's a miracle I am still alive today in many ways. I'm a lucky blessed woman. Even crazier, this am I started feeling good. I had a little hop in my step, a swing in my hips, a gleam in my eye. I haven't had in a while. I took the opportunity to do something crazy: go out to do errands! I snagged J's car to get it's oil changed. I went grocery shopping to stock back up on food. This all felt great bc A. The oil change guys think I'm cute enough to flirt with and B. One great woman/friend/supporter sent us some help so I could pay for it. Thanks CW. It was the first time in too long to remember that I wasn't stressed at the grocery store juggling coupons, the flier, and my list trying to spend next to nothing and eat. I was still juggling everything. I just wasn't stressed I knew I had moolah! Exciting to be fed with less stress, but I've warn my cute self out. Its time for a shower.
Sent from my Verizon Wireless BlackBerry

Saturday, November 12, 2011

That article that I felt so compelled to write apparently was worthwhile. At least, that's what the people at The Huffington Post seem to think. I don't think this feeling of excitement and validation everytime I get published will ever go away. I hope it doesn't. It's like an unexpected present.

How to Shop to Boost the Middle Class

I felt absolutely compelled to write this. Maybe, because, I understand the anger among the occupy protests. I also understand what it's like to do absolutely everything to try to get ahead only to have expenses knock my family back to poverty. It is time for the inequality to stop, but that does not mean anyone has to stop shopping.

The 2011 holiday season is fast approaching and as with tradition off-shore factories are kicking into high gear to meet American’s mass consumer needs, but this year’s Occupy Wall St.’s War on Poverty has brought a new form of enlightenment to shopping, and believe it or not, it’s possible to shop for the upcoming holidays like an heiress while boosting the middle class.

In the past shopping local may have conjured up visions of fruits, vegetables and farmer’s markets, and if you’re the type that loves to give fresh baked goods to friends and family for the holidays, by all means wrap up those cookies up and help out a local farmer. However, there are far more options than just fruits and vegetables. Farmer’s markets often have fresh hand made wreaths, jellies, baskets, hand made cards, soaps, everything you need to put together the perfect basket of goodies for your child’s teacher or boss.

If farmer’s markets just aren’t your style and you want to have the full-fledged shopping experience, check out craft fairs this season. Local crafters offer unique, often one-of-a-kind hand made goods for rock bottom prices that reflect the economic times. My last big find was a gorgeous 11x14 photo, matted and framed, for $35. You won’t be able to find that at the mall. If you’re new to the craft fair scene and don’t know where to go, you’re not lost, visit either or to search events near you.

If you’re looking at these options and thinking, “Not possible. I work, have kids, and just can’t shop beyond my computer.” Have no fear, boosting the middle class is just as easy on-line. is an on-line, shopping mecca filled with options handmade from U.S. artists. Even better, by shopping directly you’ve cut out the middle man and can find quality goods for rock-bottom prices. This is the absolute best place to find customized jewelry ranging from stamped name pendants to upcycled earrings and pendants made from bottle caps with any image your heart desires, all for quality prices. Want to give and get? At etsy, you can find shops supporting good causes such as that has all proceeds go to assisting cancer patients with their medical costs.

You can even find your holiday cards there too instead of running to a big department store, paying a sitting fee for pictures, and printing them out yourself. The options to help locally with holiday cards are endless. Why not try the local photography business for your Christmas pictures? Every town has one, and often they infuse far more character into photos than the bland surroundings of shoppers, cash registers and fluorescent lights. You can even find small businesses via the net to have customized cards created such as

Christmas cards are also a great opportunity to give back. If you’re not interested in customizing, most non-profit foundations sell Christmas cards as a fundraiser. The Sam Fund, which helps young adult cancer survivors to “live again” is selling sets of 21 for $25 with free shipping at

For the avid reader, allows authors, musicians, and film-makers everywhere to publish their works independently, getting their master pieces to you for middle man free prices. Shopping is as simple as going to, selecting member spotlight on the toolbar, and clicking review new work. You can even find new, quirky Christmas tales such as A Ghetto WaterFront Christmas Or Herbie’s Mysterious Christmas Adventure.

If you’re still lacking ideas the go-to gift certificate does not have to be from a big business. You can give a gym membership, certificate to the spa or salon, a gift certificate to the local restaurant you’ve been wanting to try, money to get your husband’s car detailed, a membership or rounds at the golf course, hire a housekeeper for a day or even pay for snow plowing for the season.

Shopping to boost your local economy or middle America does not have to be more expensive, stressful or time consuming than braving traffic to a crowded store and elbowing other desperate shoppers for the must have toy on sale. It’s actually much easier, friendly, and you’ll leave feeling good, not just because you missed out on the elbowing, but from knowing you’ve made a difference. 

Friday, November 11, 2011

The day after therapy is rough. Dad and I did manage to get kamikaze style care in NYC. We left at 6am for my 11 appt and pulled up perfectly at 10:45 after some discussion about whether the address I had and the garmen were actually more correct than what my dad decided in his brain. Vic's job was to question all my tips yesterday. He didn't even take up the $20 valet service at first, opting instead to find his own spot, which he did, but the never paid the meter. I miss the days when I was a savvy new yorker and he was a nervous country bumpkin. Then he listened to me. I also think he ignored me when both yanellie and I said if you hit commuter traffic, go to her house to wait it out. If you leave at 5pm from nyc or 7:30pm you'll get home the same time due to gridlock! I say I think because I was passed out from lots of ativan and benadryl. All that aside, I love my dad for the great care. Our trip basically cost $100 + food and tips. That's the lowest we could possibly get it with gas a minimum of $80, parking $20. We couldve packed snacks to save on food, but due to an unfortunate incident where a high strung nurse called my name 3 times in quick succession causing me to hop out of my chair, run across the office screaming "I'm here. I'm here!" Then catching the door as she shut it to get inside, I almost passed out. I caught up up to nursey then, I felt it coming screamed, "I need to sit down!" Ugh, waking up the next morning is rough. Some people forget that I go to nyc for treatment, not for shopping, and I feel like shit the next day. Every appendage feels weighted down. I can feel the oxygen shunting to my head and torso. My head is hazey from being drugged to the hilt and I can't run from shop to shop carrying extra weight. It will make me irritable and pissy. Most people understand this, especially "caretakers," but you may be surprised to know some people don't. Thanks to lots of medication, I've been able to play today! Don't want to leave on a grouchy note but that's just how it goes today.
Sent from my Verizon Wireless BlackBerry

Thursday, November 10, 2011

A Dad-date

Hi Too All

The new drug is working!!! See Hillary's note to me about her PET scan of last week.

More good news!! My PET scan came back remarkably better. The tumors in my chest are gone. There are some iffy areas near my kidney, but infections give false positives and I went in complaining about a possible kidney infection. So I'll probably be cleared up with Cipro, an antibiotic. I can stay on my treatment a year to keep me in remission! Yay. Good news.Hillary

We are headed back to NYU today for another treatment. We will go every 3 weeks for the next year. We are trying to go down and back in the same day this time if Hillary is up to it. If not we have lots of friends and Relatives along the I-95 & I 91 corridor that will be getting a call for an overnight visit. This treatment is not anywhere near as toxic as chemo. Hillary is able to function much better and can be more active. Her quality of life is much better than it has been. She still gets tired easily and can't walk for very long but her mind is much sharper. No Chemo Brain. It is believed that the cancer will come right back if she goes off the drug.

Hillary is still active. Xander's soccer season has finished. She was able to go to every game! Now it's basketball season and can do it some more. She is making jewelry. She has her first actual Job since she started treatment 5.5 years ago. She is writing special articles for a local weekly newspaper. She told me they only want 3-400 words so it only takes me an hour!! She is also writing for the Huffington post but doesn't get paid. Her mentor at the post is writing the new TV series "suburbatory".

I don't know what she will do next. She always surprises me! I hope she continues to Change all of our lives for the better. Keep those thoughts and prayers coming they are being answered.

Love too all
Vic, Nancy, Heather Allen, Pierce and Preston, Grace and Patric, Jon Xander and Especially Hillary

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Wednesday, November 9, 2011

It's amazing how easily things are coming to me now. I can stay awake most days. I can pick up the house, do dishes, fold laundry, and make dinners some nights, but not all three in one day. I can dance and sing with X. I can make him and friends buffets of food. I can wake him up by jumping on the bed and screaming on the top of my lungs, something that would have left me in a cold sweat gasping for breath just last year. X remembers the days before the singing and dancing stopped, when I would wake him up in the morning by signing "xander, bander fo fander fe fi mo mander- Xander" and stealing his covers. I'm so happy to have these moments. I'm so happy he has memories of me! For so long I lived in fear that I'd leave my child motherless, without any memory of who I was. I'm still suspicious about how long this will keep up and if I'll continue to get better or if something will happen to set me back again. Getting better is almost scarier than the constant disease. Disappointment is worse than the status quo. Sometimes I lose my breath and think, "what if my lungs keep deteriorating?" The highest rate of death from lung disease is not from lung cancer or COPD in people my age. It's from lung fibrosis or scaring and I'm a poster child with the radiation I received and surgeries. I am really confused as to how to react to my PET scan news. My body feels better, but I'm highly suspicious of the cancer. It's a nasty cancer that comes back time after time. I haven't had three clear PET scans in a row in the past six years. I think it was 2007 when I had two in a row. I'm choosing to celebrate, of course, even if it's only for 3 months. This time last year I had a promising PET scan for the holidays too. I know I'm resigned to live life with a very real fear many don't understand, like a modern day Eve who bit the apple and now knows far too much about suffering. I'm not afraid my cancer will come back and kill me quickly. I fear more suffering. I'm scared of days I'm so tired even my teeth and skin hurt and there is no relief from morphine, benzos, bubble baths or any other place, when I just pray for relief from sleep. It's hard to believe, after almost six years, being told I'll never recover, that maybe I can get a life back. A life, not my life, not the one I thought I'd have but whoever gets that? I'll have an even better one, living fearlessly knowing that prayers and love have kept me here. I'm off to treatment kamikazi style tomorrow, leaving for the city at 6am, starting treatment at 11, hopefully out by 3 and home that night.
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Tuesday, November 8, 2011

PET Results!

I hope you all have been waiting by your computers with baited breath for my most recent test results. I've been feeling good. I've had more energy. I've had some minor issues that could have been symptoms: extreme fatigue, indigestion, lung and kidney pain, etc. But it turns out........... My cancer has almost disappeared! All the tumors in my chest are now gone! There were some "iffy" areas according to the radiologist, namely a strong of nodes in my iliac crest that were new or larger. Good thing my hematologist is also a radiologist, because A man with intelligence is just so sexy. Just kidding, it's good because he can tell the difference between cancer, inflammation, brown fat and a virus, all which cause false positives. I'd come in that morning complaining of a possible UTI. I was peeing cloudy bright neon yellow urine, which is always a little bloody too. I had to go all the time and it hurt! Turns out those "iffy" nodes could just be an immune reaction, something cipro could take care of. Yay, so possibly no cancer there. It was a busy day and I'd changed appt. So Dr. G and I didn't get to do our ceremonial over view of the scan where I bed for a picture to show how well, or not, that I'm doing. Maybe next time. Thurs. It's back to NYU for treatment.
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Monday, November 7, 2011

Playing with pain

I decided to play with my pain meds last week. Palliative care actually started it. Like most things, I just decided to take it up a notch. I wasn't feeling nauseas or anxious so for the first time in 5 years I decided to ditch my ativan. I'm sick of burning holes in my brain. I thought I was weaning myself appropriately when on Fri, after a morning of fun with x, the exhaustion and crankiness hit me. I wanted to stay up and be fun so I took a newly prescribed stronger painpill then two cesamet or chemical marijauna pills. Those usually keep me up and moving. Not this time. Instead it knocked me flat on my ass giving me the spins and everything. I could not put a coherent thought together, and x got worried. He started asking me who he could call to hang out with them while I slept, but now I think he was scared for my well being and didn't know how to say it. He did call the only relative around, twice, asking for her to come over and get him, which I think could translate into, "I'm scared. Come check on mom. Tell me it's ok and get me out of there," but she didn't get it. I was confident I was fine, but knew I was a little too heavily medicated. That whole situation breaks my heart. I'm trying to get rid of brain burning benzos and instead almost OD with my son. Then, when x finds help, he can't get the help. I remember how I felt when I first started calling for help. I was sick, but moreso I was sad and devastated. To speak the words I had to overcome the lump in my throat threatening to cry any minute. I did not want to say the words to ask because the words made it real. The words were my admission that my life was beyond my control. I can't imagine how x feels when he's scared and desperately wants to ask for help. He's only 8, but I've been so impressed with (most) his values and ideals that are showing through when he socializes. I get the attitude, but with these past months going well, x has finally started to overcome some obstacles of his own. His reading is improving. He likes school somedays. He has a best friend. I'm so happy I get to see this. I'm alarmed that I've been on chemo almost straight through from April 2006 until now- 2011. That really hit me. We'll see how successful the ativan weaning is. I've kicked my pm habit and my am habit was mostly gone, until I got severely nauseas today. But that's another story. I don't want to need it daily. I have my PET scan today, cross your fingers, toes, and legs. Its an important day.
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Friday, November 4, 2011

I was at it again. Huffing and puffing and trying to help people out. My latest posting on the huffington Post is: If you're an avid Baldie lover, and I hope many of you are, you've probably seen this before under a different title with a little extras. Ten things I wish I knew when I became sick or ten insider tips to avoiding a medical finacial crisis. I don't know. Trying to remember is hurting my brain. X has been home for the last two days, which I was excited about, because I like to give some extra mothering when I can. I was excited but nervous about this whole fatigue thing. On top of falling asleep from exhaustion, Palliative care put me on a new, more effective, pain regimen monday. They called Tues after I bought, started the new regimen, felt the best I'd felt in forever, then called and said, "no, just kidding, you can't have that. Your skin allergies are to severe even if you felt fabulous. Go back to what you were taking that we decided yesterday did NOT work for you. Oops, and even though you all ready spent your $40 in co-pays you have allowed for pain in a month, go spend another $60 to buy the other stuff that doesn't work. What's another $100 bucks?". It's so frustrating I want to go smash the bottles or throw them as far as I can into the great beyond, but I know if I did that then I'd wake up to addicts sniffing my driveway and all sorts of people with flashlights in the woods. All sorts of happy content people searching through the woods, hopefully. Well either way mom child time went well yesterday and until 1:30 today, when my body revolted. It started with me eating a piece of pizza I KNOW hurts me at 12:15. At 1 I'm getting stomach pains and sweats so x and I rush home. I decide to take the combination of meds I know will heal me pain and usually wakes me up. Usually. Meaning, not for me, no not this time. I fell asleep, which I think made X anxious and upset when the nap went on. He wanted to call everybody to take him/be with him, but nana wasn't in town, Jon, Pat, Dad, and grampa were working and meme had an appt. I know he was worried, maybe, I took to much meds, which I essentially may have. It was not more than prescribed, but maybe more than my little man's psyche to handle. I hate worrying him, and worse, I'm wondering if how I feel isn't a side effect? What if it's a symptom? Severe chronic fatigue could be from treatment or cancer, but generally with the B side effects of lymphoma I can't control where I sleep and don't sleep well at night. It feels like cancer fatigue. I'm getting acid reflux and hiccups again. Ok, it sounds silly, but trust me, this happens. I think it's how a tumor is pushing on my lower esophogial sphincter (the valve between the throat and the stomach) causing it to spasm when I eat or drink. Then I have increased pain, especially in my lungs and hips where I've either had active disease or a lot of fibrosis (scarring). If you thought what you could see outside was bad.... But I have hope and a strong faith that whatever will be will be and that will be the best for all beings. Hmmm, it's a hilliteration (hill's alliteration). Couldn't hold back the geeky writer joke. But then there's the good events, more energy, etc. I'll know results Monday Nov. 7th Everyone, please pray, using whatever words or images in your mind that you like.
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Thursday, November 3, 2011

Over Medicating or Narcolepsy? Why I'll fall Asleep Anywhere.

Brother-in-law, Allen, with his two biggest educational
supporters, my sister, Heather, and his Prof. & Mentor.
I don't know what's wrong with me, for all the good that is happening, I've been requiring a lot of sleep, and my body doesn't seem to care when and where it gets it.
If sleepy time was confined to my bed I'd call this the normal fatigue side-effect that I get with every therapy, but it's not.
Like I said yesterday, I'm forming a routine like I haven't had in years. I'm waking up able to take care f myself and X in the morning! How amazing is that?
I'm also able to do afternoon and dinner routines, which is absolutely fabulous.
But did I mention in the middle of the day when I'm, say, meeting with my NP, in family family, or watching my brother-in-law present his Master's thesis (Go, Allen, Congratulations!), I doze off.
Dozing off while watching Allen present his thesis reminded me a little bit of high school, but unlike high school, yesterday I was doing everything I could to stay awake!
Allen, presenting his Master's Thesis on Lean Management
 of Medical Device Products, one of his final tasks before
graduating from Mass. College of Pharmacy.
I started searching my purse for mints, gum, anything that would stimulate me somehow, then as I was in the purse, I started to nod off, my eyes closed, me head went down slowly, I snapped my felt back up and through a mint in my mouth.
But then again, almost immediately after, mint in mouth, the same thing happens again, but this time I'm distracting from Allen worrying people about choking!
Hopefully I won't look like a dying narcoleptic today when I have my "official" interview with the VT Journal publisher as a freelance writer. Cross those fingers.
This problem started being an issue last week during our families very first therapy appointment.
Yes, we are now all in this together to be sure we stay sane.
And this little monster stayed home, but
I couldn't let Halloween pass without
showing a picture of my Spanish wrestler.
(where does he come up with these ideas?)
I do think the therapist got the picture of how sick I am, since I kept dozing off with J and X acting like it was completely normal for me to pass out mid conversation.
The therapist has invited just J and I back to discuss things we may not want to in front of X. I thought she meant relationship issues, fighting, now I'm pretty sure she means the prognosis of my disease.
I've only seen people with end stage disease fall asleep all over the place like I do.
I'll do it when I'm eating, walking up to my food fallen around me. I'll do it when drinking, being awoken only by the cold splash of whatever I hoped to get in my stomach.
I spoke with palliative care about this and we switched my pain medications to something more easily detoxified through the body, especially medications that took altered kidney function into account.
My kidneys are running fine now, but it's predicted it may not stay that way. I'm thankful for the painful but life saving metal stent that's gotten me here. I'll give that cross up to God. It, honestly, feels like such a small problem alongside others.
Of course with me being me, with my luck, the next day palliative care called, and I was told I couldn't use the new med due to my skin allergies.
I'll go back in two weeks. Hopefully this will pass by then. 

Wednesday, November 2, 2011

I'm Making it

I flipped to my blog to write this morning and suddenly, for some unknown reason, my playlist skipped to "I made it."
I'll take that as a sign, thank you.
If I would survive until 30 years old or not has always been suspect in my mind. I was a frail little girl. I was always getting respiratory infections and the latest virus, like mono. Hitting 29 last August was like getting hit with a ton of bricks.
Now. . . I'm not so sure.
For the year I thought would kill me, filled with stumbling blocks like renal failure and another rapid re-occurence where high-test chemo was again recommended, the outlook so far is good.
Not only good, I barely dare to say it, but excellent.
Yesterday, I hung out with a friend in the morning, took my obligatory naps (yes, those are still needed), wrote talked on the phone, picked up the house cleaned the dishes, played with X when he got home, cooked a family dinner and was still able to stay awake and talking until past 8pm!
This is huge.
I feel like, dare I say it again, I'm normalizing!!
I'm able to shower in the morning, every morning if I want to without having the chore of washing and dressing exhaust me to the point of falling back asleep. During my first transplant, I made it a goal to shower and change my clothes everyday to feel fresh and "human."Recently, I'd go so many days without showering I'd lose count. I wasn't even able to fake that I felt good.
My "healthy make-up" had become a thing of the past. Now, I'm making lipstick and cover-up part of my am routine again, like taking my medication, brushing my teeth, and trying to write.
That's, of course, if X allows it. He has his own am routine I have to cater to.
Finally, after years of struggling to make it through side businesses, art, jewelry, books, donations, and down right begging, I finally feel well enough to try free lance writing.
I realized how much time and energy I was placing in trying to get these other ideas to work when none were paying off significantly. Some of them had also stopped making me happy.
I don't want to do things for money that do not make me happy at this point in my life.
I'm excited to try working with The VT Journal. I'll be doing two stories a week: one news and one feature of an interesting person in Claremont.
I'm just excited to be joining the world again.
That doesn't mean I'll be stopping with my jewelry, which you can find on, writing for the Huffington Post, creating Z books, or "cleaning out my closet" on facebook, but at least I won't stress over whether I can buy apples and coconut water.
I feel like I've been hiding, isolated, for years now from being forced by my  body to lie on my couch ill and in fear of getting sicker.
At least now, I'm feeling okay. I have a little more energy, and I'm hoping to hit the big 3-0 in August.
This year, I don't want pages of facebook "Happy Birthdays" I want to see faces, here, for one huge celebration of  life.
Don't live here, no problem, we have plenty of space to spare inside and out. Bring some camping gear.
Barely know me? Again, not a problem, if we've even crossed paths your invited to come over.
Never met me in your life? Still, absolutely not a problem, if you've been reading me, praying for me, feel you know me, I want you here. You've all been a part of my survival. I never would have survived this long with out your prayers and support.
But of course, after years of disappointments and near death experiences, I'm tentatively calling this a success. It's a temporary success. Thanks in large part to God who has listened to the prayers and guided my way.
I'll now the actually effectiveness of this treatment on Mon. Nov. 7th when I get my first PET scan since starting the medication. I missed all-saints day yesterday, but Let's pray for good news.

Tuesday, November 1, 2011

Surviving with Chronic Cancer will kill you financially

After almost 5.5 years of anxiety and stress regarding my disease and our financial situation I have finally made a both saddening and exciting decision...... I'm getting a job. Yes, folks, I have been hired for a real bonafide job with a paycheck as a freelance writer for The VT Journal. I've spent too much time crying and stressing if I should have or could afford spending that $5 on a sweater from the thrift store. I was crying and praying to God, again, about the desperation I felt regarding my inability to provide for my family when the newspaper flipped open to an eye-popping classified ad looking for a writer in the Claremont area. I sent off a quick email, was sent on an article "interview" and viola, Hallowesta Celebrates its Thirteenth Anniversary is hitting the front page with pics. With receiving SSDI, I'm allowed to make up to $1200 monthly; however, I've never been healthy enough to commit to anything. I can't work out of the house. I can't exert much energy. I'll never make $1200 monthly, but I also once told myself I'd never be able to work anymore, anywhere, ever again. I guess you never know what may happen. Luckily, I love writing, and I'm finally healthy enough to feel I can commit to a job, or commit to anything that will re occur in the future. I can probably submit two stories a week. The price I'm getting isn't what I'd hoped for, but it's something. It's stability. We so desperately need stability. Winter is coming soon. We need a $300 storm door so we no longer can view the outside from our hallway. We need thermal shades to regulate heat with no strings, because I have managed to break all the cheap ones before. We can't get those things to eat and stay warm while I pay $250+ every three weeks going to New York. So the goodnews is I'm healthy enough to try working at something I love. The sad part is that living with cancer may be survivable, but we can't survive financially fighting cancer. No one can.
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