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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Sunday, November 29, 2009

Here's what you've been missing

I've been writing.
I have.
I just haven't been writing anything worthy, which means, I've been having trouble writing. 
I haven't been able to put my feelings in black and white. 
It's thanksgiving. I'm supposed to be thankful, right?
Isn't that the idea? Anybody.
Because I'm not. I'm pissy.
Its the same nagging lagging idea that my feelings are not justifiable. That they're some how unacceptable, or even crazier, may somehow offend someone somewhere and make me suffer even more. 
I've read about these crazy thoughts, they're called magical thinking. No one is up in my head ostracizing me because even though I'm in remission I'm more depressed than when I thought I was dying.
 Now I'm to the point where I'm rejoining life looking around and thinking "fuuuuccckkk, this is it. I still really can't breath? I survived but made it out with 33% functioning capacity of my lungs."
 I feel like a gold fish gulping for air but not getting any. 
Okay, so I have my oxygen for this and five separate antibiotics. That would be zithromax, doxycycline, bactrim, keflex and something else I can't remember bc though its prescribed, I'm not taking it.
 I think some of these have to overlap somewhere. 
I vote that Zithromax and bactrim should cover me until Tues, so that's what I'm taking.
This regimen is what happens when there are too many cooks in the kitchen. It's what the football team does when the quarterback leaves for two weeks for conferences and vacation and the running back gets H1N1 and demands that her lungs get treated with or without her "go-to" MD.
Yeah, I'm talking about Dr. G., who apparently forgot about that oath that he took out of med school never, ever to leave the office for more than one week.
Antibiotics were never my thing.
I'd ask someone to cut them back except this concoction made me sick on friday and when I called at 2;30 my np had all ready left for the weekend (yeah you're so busted anna) and I couldn't get up off the bathroom floor from throwing up sweating and gasping for breath to tell the secretary who else may be helpful (j was calling) so I did what I do so well, I knocked myself out for 24 hours. 
Yes, if any of you ever have questions about how to make yourself sleep through the pain without killing yourself, I'm your girl. I'm straight up professional of walking that fine line between overdose and comatose with purpose.
I keep reminding myself that I did get H1N1, which is bound to go down in history as the plague of 2009. Heather so kindly reminded me that I didn't die of the flu like the Dartmouth public health student.
When I tried to use this logic with one of the nurses who say me they said, Yeah. . . . but they only died because they had co-existing conditions."
Hmmmmm, was this one of those comments designed to make me feel better? Because it really didn't.
I'm pretty sure she understood what when I said, "but I had underlying conditions."
I failed to say, specifically, lung problems, which are the primary flu killer.
Then Dani, bless her soul, reminded me that it was only a week ago that I invited her over to hang out only to fall asleep mid sentence.
I really thought that was about a month ago.
Sick people time is far different than healthy people time.
Good news is, despite the fact that i can't breathe, which means I can't play sports, and my GVHD is affecting ALL my mucous membranes (Use your imagination and guess who is no longer having any sex), I do still have the ability to make my son laugh until he wets his pants.
Also, the best predictor of the future is the past and I have over come every obstacle thus far, I'm pretty confident I'm still one tough b-i-t-c-h.
Just in case I need more evidence, I'm going to trek back to Manhattan for some reminiscening on Thursday. Go-to Doc gets back and I'm seeing him on Tues., so maybe, possibly, I'll be back in fighting form by the time I'm thirty.
Here's what you've been missing lately.. . . . 
We are all lying in the gutter, but some of us are staring at the stars. I've finally gotten around to dragging myself out of this funk I've been in for the past month. Emotionally recovering from the fall has taken longer than normal. My continual lung problems have dampened my get up and go attitude. For the first time in my memory, I was questioning my ability to do activities I enjoyed. If I didn't think I could go out and do exactly what I wanted, I wouldn't go at all. That's not like the jet setter, the world is my playgroynd hill I like to be. Life isn't a spectator sport! For the past four years if I wanted to do something I would do it with the knowledge that its just as easy to be sick somewhere else as it is at home. But there is no handbook to transition back into reality after you've spent months begging for death or a cure. I had reached the point that I really thought I would die. I had let go of the world. I never wondered how I'd go around rejoining it later. Rejoining is harder than I thought. The flu didn't help with my motivation. I'm just one big case study for ptsd amotivational syndrome. I'm going to have to think about how I can overcome my funk. I think the holidays will help.
I'm finally getting back to life: I'm sitting waiting patiently for my doctor's appointment. No wonder I feel so bored and lost when I'm at home trying to figure out what I do with my time. I wait. That's what I do. The report I received from my first round of tests: pulmonary function testss concludes that my lungs are functioing at 1/3 or 1/2 the predicted capacity of any other 27 year old female. I don't breathe in right. I don't breathe out right, but I don't think these findings really matter, since I'm still excited to be breathing at all after the debaucle I've been calling my life. Doesn't this lend well to the next large political debate coming on the coat tails of reform regarding medical over spending. J woke me up during my twenty hour slumber to force me to watch a 60 minutes talking about excessive health spending in the end of life. The news program showed clearly an elderly dying man requesting not only CPR but a heart and lung transplant. Whoa, wait a minute, just what was he trying to say? 

Extreme Make Over NH Style


For all those of you who don't know, know you do, check out extreme makeover home edition NH style tonight! You could see CHaD, Children's Hospital at Dartmouth, and a great family who after receiving all those free goods still gave back with toys for ChaD.
That's because Cancer Patients Rock!

Tuesday, November 24, 2009

Three years ago

OUCH. I try not to look back too far or too often, but taking a jog down memory lane, I found this update from my father from 2006. I never knew it was humanly possible to suffer so long:11/23/2006

We have a lot to be thankful for this Thanksgiving Day. Hillary did make it home last night!! She slept in her own bed without anything hitched up to her for just the second time in 18 days. She is feeling great. Xander had not been able to see her in a week. The moment she walked through the door and to see the excited look on his face was priceless. This moment was her incentive to get well. It doesn't get much better than this.

We are having our Thanksgiving Feast at our house. Hillary and Heather wanted Ham, we wanted Turkey so Nancy did both. Hillary's friend from New York, Yanillie is joining us along with her family. Tony and Linda Zutter will join us along with Patrick and Grace, Jon, Hillary and Xander, and Heather. Allen, Heather's fiance' will be missed as he is in North Carolina and could not make it back. We wish you could all be here with us. You all have certainly been the strength and support that we are very Thankful for.

Hillary has not had her Bone Marrow stem cell transplant yet. Heather has donated 5 million of her's and are stored away ready for action. Hillary's 18 day stay was not planned and unexpected. The doctors have not given us a new schedule yet but we know she should get the transplant as soon as possible. She is Cancer free of lymph nodes right now but the cancer is still in her blood stream. Her body is not rebounding from the chemo like it did when they first started. We expect that when they get an opening next week they will tell to come to Dartmouth-Hitchcock and get started. I don't think they will give her the option of waiting till after Christmas. This will be a 21-28 day stay in the hospital with approx 3 months after that to get her immune system back. She will get through this, She is a fighter. Our good friend Dr West who deliver Heather and Hillary reminded us that She was his most difficult birth that he had ever had. She made it through against great odds and will beat this also.

Heather is done her part but is still feeling the effects. She gets sick when she drinks wine now. She does not have as much energy. But her attitude and presence is so positive it is a motivating force. Heather is thankful she could help.

Thanksgiving is my favorite holiday. It gives us time out of our busy lives to thank the lord we have friends like you who care. All the material things in life are put aside and it's about family, friends and FOOD. It's about giving thanks for the past and the many great things that have happened to us. We are thankful for being able to enjoy another day. We hope you all enjoy your Thanksgiving.

It’s official, I saw my pulmonologist. My lungs are bad.

I’ve had several pulmonary function tests to gauge my breathing before that were all relatively normal.

Now, I have a “severe” obstructive pulmonary disease. It’s very likely bronchiolitis obliterans. My lungs are functioning at ¼ the capacity of a normal 27 year old.

Good news is: there are treatments.

I’m also still getting better, day by day.

I was able to run around shopping for a full day! My fatigue has very little to do with my lung problems.

I think I will return to a normalcy that I can enjoy when the smoke clears.

I don’t know if that normalcy will include coaching Xander.

I think coaching basketball may be off the list again for this year.

I always dreamed that I’d be the alpha soccer mom.

I think I still can be. I just won’t coach. I’ll do what my mom did, I’ll cart kids around, bake cookies, and spaghetti dinners, throw parties on Fridays after the games.

I don’t think rearranging my ideas constitutes a total loss.

It’s just another sacrifice I had to make to be present.

Now, I’m going to run off to see Anna, my NP, at DHMC, and I’m going all by myself!

Independence is certainly something to be thankful for.

Monday, November 23, 2009

I’ve gotten to the point in the treatment cycle where I’m ready for my life back.

I’ve been treated. I’ve suffered. I’ve been cured.

I want to enjoy what I have.

It’s time for the excitement to begin!

Except. . . . .I slept 20 hours trying to recover from having fun on Friday and Saturday.

By having fun, I mean throwing a birthday party for my father, going to bed by 9pm, and going out shopping for the day with the girls, again in bed by 9pm.

My big highlight was firing Blockbuster in exchange for Netflix (I've finally joined the 21st century), and figuring out how to instantly download movies to watch on our tv. We can watch as many as we want for less than $9 a month. X has all ready watched "The Ant Bully," "Scooby Doo," and "Pokie Mon The Movie."

If that's not a reason to stay in bed, I don't know what is.

Good times, yes, I know, but they pale in comparison to leaving for the club at 11pm to stay out until 6 am only to sleep until 7:30 then drive 4 hours home on a Friday to be with my family for the weekend.

This is how I used to be: Ms. Superstar Energy. There was nothing that was stopping me. I’d work my 60 hours without even a little fatigue.

Now, I have to chose my events carefully knowing that if I say yes to one thing I may be trading in another.

Or even there is always the possibility that I’ll make plans and fall asleep anyway.

By Sunday morning at 10:30, as I was hanging out with Danielle,when my eyes began to close while we talked. My body would try to fall asleep and I’d do my best to fight it.

My nerves would twitch myself back awake, like I was in high school desperately trying to keep my eyes awake through a boring class.

Except, I wasn’t in school. I was enjoying myself.

Jon noticed me nodding off first and then Danielle.

I went to bed for a little nap at 10:30.

I slept until the phone woke me up at 3:30pm and stayed awake until 6:30, only to fall back asleep and stay there until this morning.

I’m wondering when my body will stop pulling the strings.

I thought I’d finally conquered the extreme exhaustion and fatigue that are the hallmarks of cancer treatment.

It’s more than simply being tired.

It’s being tired to the point it is painful, that every movement takes thought and consideration before it’s executed, even rolling over to pick up the phone.

After my first transplant, I lived within a 20’ radius for months.

I’d leave my bubble only for outings to the hospital.

During that period, my sleeping was scheduled.

I knew I would need a nap, no matter what activity I did, in the morning and then again in the afternoon.

My two rounds of chemotherapy does not even slightly compare with the big guns that were thrown at me years ago, but the cumulative effect of the years of therapy has definitely caught up with me.

On the birghtside, I ran amok shopping sans oxygen. I'm seeing he pulmonologist today for a game plan, then I'll meet with Anna and call Melissa tomorrow to see the implications of my test results.

I'm hoping for a "wait and see" approuch. This will allow me to continue to recovering. My lungs don't seem to be deteriorating.

It has only been a week since my diagnosis with H1N1. I can’t expect to be the all-star patient that recoveries from that all energetic and shiny.

I think with this taken into consideration, I’m doing okay.

The flu should by me another week of rest time, then I’ll start worrying about feeling useless.

Friday, November 20, 2009

Flu Fighting Tips


HAPPY BIRTHDAY DAD!

Vic is turning 29 again! Come celebrate with us tonight at Vic & Nancy’s house 6pm.

The flu is not as easy as I originally expected.

It’s all fun and games when you’re in the hospital being waited on hand and foot having my every need meticulously watched 24/7 and catered to.

I can honestly say, when you have the flu, the hospital is the place to be.

I miss the TLC from the nursing staff, who have also really become my friends.

I get my bed changed daily. Three hot meals delivered to my bedside.

Of course, not everything can be perfect.

Jake, if you’re reading, the shower needs to be fixed in 106 on 1 West.

When it’s turned to hot it loses pressure and does not turn hot.

I scrubbed up in the sink because it was warmer with more flow.

But I have the flu so I was really not concerned at all with my cleanliness.

The only hygienic problem bothering me now is the nasty haliosytosis (that’s medical speak for bad breath) I have from my constantly runny nose, post nasal drip, and possible lung involvement.

Did you know you can taste it when you have pneumonia?

At least I can and I’ve heard f other cases where others have as well.

I am also being careful to keep my snot rags contained.

Where ever I go my box of tissues, bottle water, and plastic bag follows.

I’ll confess that usually I just make one big mess throwing tissues all around my surrounding area.

I have it pretty dan good here to though.

Becky came over Weds., braving the possibility of virus hanging around my house to give me a clean place and fresh sheets. Everybody, please just take a second, pause, and think how awesome Becky is.

As far as dinner goes, J’s got that for me.

It’s time I admit that I do get served dinner in bed, and whatever need it is I have after I declare “bedtime,” which could be as early as 5:30pm, he takes care of.

I’m feeling really well cared for.

So you’d think taking care of breakfast and lunch would be just fine, but the fatigue has fastened my ass straight to the couch.

I watched a “Project Runway” marathon today and took a nap.

My goal was to declutter the kitchen, but I didn’t get very far.

My head says I should feel well, but my body is just not cooperating.

This has to be the most frustration disparity all human kind faces and trust me, I know about it.

There are so many things I want to do and think I can do and then when I actually do them, watch out, I’ve nearly killed myself.

That whole mind over matter thing was definitely created by a healthy person.

Anybody with a debilitating chronic illness knows that sometimes your body is pulling the strings.

The ideation that people, through thought and desire alone, can cure themselves or even rehab themselves is insanity, and to be honest, it adds to the pressure of showing a strong face and denying what the body is telling a person it needs.

It can be harmful if caregivers or loved ones take this stance by adding stress to an already difficult situation.

But that’s a whole rant that has been bottled up inside for years.

It’s coming out now since I’m Miss Cranky Pants with the flu.

Some quick tips to be in the best shape possible to battle the flu: Get lots of rest and stay away from other people

- Drink at least six cups of clear fluids daily; drinking tea works as a diuretic to flush out your system. Echinacea will help with some immune boosting action.

- Take over-the-counter aspirin, acetaminophen or ibuprofen to relieve fever, headache and muscle aches (Do not give aspirin to children and teens under age 20). Saline nose drops or nasal decongestants are also useful.

- Raise the humidity in your home (use a humidifier or sit in the bathroom with hot shower running)

- Sleep with your head elevated

- Gargle with salt water (1/4 teaspoon salt in eight ounces of warm water) 4 times a day. Suck on hard candy to relieve a sore throat or try my favorite mixture of a tbsp. honey with a tsp. of lemon juice heated.

- Take a steamy shower

- Avoid sugar which affects the body by impairing your immune response.

- Avoid alcohol and anything else that may dehydrate you.

Now, I’ll go back to my red watering eyes and tissues.

Save a Life. . . .



This weeks news regarding a recent study stating that the current recommended practice of yearly mammograms after 40 years old only causing, "false alarms and needless biopsies" has caused tidal waves of fear and apprehension throughout health care and a scramble to adjust reimbursement practices among insurance companies.

The study’s findings contrast the long standing American Cancer Society recommendations, and the American Cancer Society has stated it will not be changing its recommendation.

Since the implementation of their recommendations death from breast cancer have seen a significant decrease.

Even Kathleen Sebelius, Secretary of the Dept. of Health and human Services, recommends approaching this study’s recommendation with caution.

Unfortunately American consumers may not have the option to disregard this finding, even though it represents only one study of hundreds and the evidence that previous practices have been working to save lives.

Insurance companies, with the opportunity for millions of profit increases by rejecting yearly mammograms, have all ready begun denying the procedure.

This shows a scary, opportunistic movement towards rejecting many, proven methods of treatment for one-single outlier study.

What will the insurance companies go after next?

I’m guessing colonoscopies after 50 years old.

Most scientist know that given the right circumstances just about any study can be manipulated into obtaining the desired results.

Insurance companies certainly have the assets and leverage to encourage poorly funded scientists for a hand in their research.

Unfortunately, this immoral practice comes at the cost of human lives.

Again, profits are taking precedent over people, and people are losing their ability to chose how they'd like their bodies treated.

I hope our representatives remember this as the senate prepares for a healthcare vote that is threatened by republicans to end in a filibuster.

Reform measures, in the form of regulation, appear to be the only way to stop large companies from using the ala carte method of picking studies to enforce their practices and not actually using the overall, scientifically proven method of practice.

Thursday, November 19, 2009

Vini. Vidi. Vici.

Everytime I come home from the hospital there is at least one evening of transition time.

The length it takes to transition back home and into “mom mode” under X’s eyes depends on the state I’m in.

If you didn’t live with us day to day, minute to minute, you would never know the changes, but they’re there.

X sees me, breaks into a big smile, but depending on how I respond determines how big his smile is.

If I come home and collapse into bed, he’ll come solemnly to my bedside and snuggle for a second before leaving me to hang out with dad, as if I’m not even there.

He’ll come in every once and a while to check on me testing what condition I’m in, if I’m up to snuggling/talking/playing.

Tuesday was a great home coming.

Despite my confirmed case of Influenza A, which is the type of H1N1, I’m feeling relatively good.

I saw X, I gave him a BIG SMILE and asked him for some love, and he gave it up in a big way, so didn’t Lexi and our other niece, Zariah, who was going after a hug from me like a fat kid after the last twinkie.

When we got him home, Dad whipped out the present we’d gotten us: Nintendo’s Old School Mario and Luigi.

Yes, our son can grow up with the same video game we loved, and I was treated like Queen of all Moms for playing it with him. He’s been signing my praises day and night since I returned home.

I’m feeling lucky, and a little bit of an emotion I almost didn’t recognize since it has been so long since I felt it.

I think it’s called. . . . . relief.

Yeah, that’s it, like a burden has been lifted off my shoulders.

I don’t have to worry about exposing myself to the dreaded plague of the swine flu and I don’t have to worry about anymore scary cancer treatments.

Been there, done that.

Vini. Vidi. Vici.

I came. I saw. I conquered.

I went to the hospital quickly, and Dartmouth took every precaution possible to ensure that I stayed safe.

For all of you gasping and wondering if you’ll get H1N1 and what will you do, if I made it through so can you.

I might just post my video of the nasal washing I received to confirm the diagnosis so all of you can remember when you ask your provider to test you’re really asking for someone to stick an 8 inch long tube up your nose then to squirt 3 ml (a little under a tsp.) of saline up your nose then to suck it back out again.

Be careful what you wish for.

Wednesday, November 18, 2009

Good news!!!

YAYAYAYAYAY!

You’ll never guess who called!

None other than one of NH’s finest representatives and Health Care Reform Supporter: Congressman Paul Hodes!

I met him very briefly in August right after his victory in passing “Michelle’s Law.”

This law was inspired by real-life cancer warrior Michelle Morse, who was a full time college student at Plymouth State University when she was diagnosed with colon cancer.

Her doctors advised her to take a medical leave while undergoing chemotherapy, but she could not because she would lose her family's health insurance.

Michelle passed away after graduating from Plymouth State University with honors.

The goal was to amend the Employee Retirement Income Security Act of 1974, the Public Health Service Act, and the Internal Revenue Code of 1986 to ensure that dependent students who take a medically necessary leave of absence do not lose health insurance coverage, and for other purposes.

Paul Hodes sponsored this bill with the support of Anne Marie’s Morse, Michelle’s mother so, "No other family will have to walk in our shoes and fight to keep the coverage they pay for to keep their seriously ill or injured college student on their policy," AnnMarie Morse said. " I am pleased that no other family or college-student will have to make the choice Michelle had to make, choosing between her health insurance or her education."

Helping turn one families’ loss into a nationwide improvement has earned Rep. Hodes my admiration and ensures that Michelle did not die in vain.

I can’t count the times I’ve cried and prayed that no family will ever have to suffer the pain and stress we have by fighting for my life and to maintain insurance coverage throughout treatment.

This is a feat not even I could accomplish as a young woman well educated in the health care system with the best support system available.

I was purged from my life insurance company immediately upon formally leaving my employer, and was purged from my disability company 4 years after starting the receipt of my benefits.

If I couldn’t maintain my coverage while sick, nobody can.

Hopefully the regulations set forth in the upcoming healthcare reform will protect patients, who do not have the wealth or energy to make their needs clear, from oppressive tactics such as these.

Oh, and more good news, I’m home from the hospital with my family!

Tuesday, November 17, 2009

Hallelujah!

Hallelujah!
The last of my cancer paraphernalia is gone!

Well . . . . I guess I get to keep the scars, but My mediport was removed yesterday afternoon!
The port had cultivated an opinion of its own and decided I was done using it, and it was coming out of my chest on its own, literally.
The incision that was made to place the port in August never quite healed properly. The stitches that sutured the skin together failed to actually keep the skin together after the thread worked its way out leaving a small hole where the port was visible.
After a month of constant accessing my skin just couldn’t take all that action anymore and began to erode. The small original wound began to expand until I had a significant hole in my chest.
I could actually touch the port that was supposed to be safely tucked away under my skin.
Luckily, it was an uninfected wound, but I couldn’t be taking any chances under the circumstances.
As a momento from my last four years of adventures, the doctor from interventional radiology who removed the port let me keep it!
I think I may put it in our dining room next to all our team pictures and Xander’s trophies.
I don’t even remember the last time I wrote, so maybe this will be a surprise, but the circumstances are I’m in the hospital with possibly the flu. At the very least I have fevers of an unknown origin.
Dun dun dun. You should be hearing horror movie music in the background and be getting chills right now.
I made it to the hospital quickly and I’m actually feeling pretty fabulous if I disregard the pain from the incision in my chest and the crackles I can feel in the base of my lungs.
These symptoms on any other day for any other person would probably make for a very BAD DAY, but for me, I’m excited!
I’m just taking a couple days at the hospital to work out the kinks in the side effects reminiscent from my treatment so I never have to hospitalized again!
I really believe that all the prayers so many people, friends, family, loved ones, acquaintances, and strangers, have said brought me to this place.
In my conversations with God over the years I acquiesced to his decision, but prayed that my disease process wouldn’t be the cause of one single person losing faith.
A cure at this point in my treatment would be a miracle, and it can only be attributed all the love and prayers that have been received on my behalf.
Despite the days of fevers, the procedure yesterday, and my treatment with Vanco that threatened to give me “red man syndrome,(a syndrome seen when the drug is administered too quickly that causes severe itching prior to the skin turning red and a feeling of your skin burning off from the inside out), I'm feeling GREAT.
If you need a visual of red man syndrome, check out the picture from my original transplant. I really did turn into a red man.
I did not spike a fever this morning though! It’s my first day fever free, and my lungs are feeling more elastic and free.

Vic Update 11/15


Hi to all

I have very good news to start off this update.

Friday we got the results of Hillary's PET scan. She is officially in remission!!! 2 clear PET scans in a row.

We are so excited. But we decided not to celebrate because it always seems to be something else to pop up.

Sure enough Saturday Morning early she spiked a fever so Nancy and Hillary were back at Dartmouth. Xander had been exposed to the flue at school this week. So without a doubt they admitted her, gave her therma flu (actually tamiflu, which is not over-the-counter) and watched her carefully.

Her lungs are still giving her a lot of trouble and she still uses oxygen.

Well by Sunday she was doing better but her MEDI port, This thing that looks like a pace maker in her chest, looks like it was getting red.

This has a lead that allows them easy access to her veins instead of an I.V. They were scheduled to take it out on Wednesday because she would not need any more chemo thru it. They will take it out on Monday. They have started her on antibiotics. She will be in for a few more days.

Well what else could go wrong when we got such good news? That was enough for now. Hillary has become the poster child for Murphy's Law. What ever can go wrong, will go wrong. But she has beaten her Cancer again!! We have lost count how many times she has beaten it!! This time we feel it!! When she gets out this time she will return to a normal life.

She needs a good 6-12 months to recover from the treatments. I think the treatments are tougher than the cancer. So lets hope and pray we are right.

Let her have a normal Christmas. She has not had 1 in 4 years. Even the 1 5years ago she new she had something wrong. So if I can give any words of wisdom. when you are healthy, enjoy that time, don't wish it away. Just look away from all your stress and problems and thank God for what you have!!

It's a wonderful life if you believe!!ThanksVic, Nancy, Patrick and Grace, Heather, Allen, Pierce and Preston, Jon Xander and especially Hillary
**EVERYBODY SHOULD KNOW DEAR DAD HAS A BIRTHDAY COMING FRIDAY! That is worth celebrating!***

Sunday, November 15, 2009

Cancer My Plans

All of you who suggested that I may, possibly get sick from not getting the H1N1 shot soon enough, or from getting it at all, or from just being your paranoid selves, you win. You were right. I am now sick.
Sick enough that yesterday at 6:45 am I woke up with a temperature of 102.7, shaking chills, and sweats.
As per orders, I took some motrin and hauled myself (well, my mom hauled me) to the emergency room.
I definitely would have preferred to be South of Boston with my sister shopping and drinking, but with most my plans, those were cancered.
Recently everything is getting cancered: my Emerging Medical Technology meeting at the Dept. of Health- Cancered, playdates- cancered, my love life-cancered, plans for every weekend since labor day-cancered (except for Nicole’s wedding and only because the doctor’s gave me a reprieve to live, not because I was healthy).
I’m not feeling so bitter about this today. I’m feeling good.
Either the pathological process occurring in my body would not have become life threatening or I came to the hospital early enough to get my tamiflu and fluids.
I was subject to another nasal washing where I got to lean my head back and hold my breath while a respiratory tech squirted saline up my nose and back out again.
As fun as this was (think about when you swim and suck the pool up your nose), I’m not begging for a repeat, but I may just be getting another round though since the sample only contained saline.
I think this would probably be useless, I’m all ready being treated and behaving under the guise that I have the flu, or at least a minor reaction to the shot.
Because I personify Murphy’s Law, I had scheduled my H1N1 shot for Friday (and no, I’m not telling where I got it for fear of riots) then on Thursday several kids from X’s class went home due to fevers. I thought about hiding from my son, but more likely than not he had already been exposed, and so had I.
Low and behold here I am, another weekend- cancered.
But I’m not to upset. How could I be? I’m in remission. I just need to iron out the kinks of my poor body. I’m still spiking temperatures so I don’t know if I’ll be released today.
In even better news, Ashley’s (http://www.blissfulbaldie.com/) was released from the hospital only 9 days after her transplant! Now she is someone I should have filmed. Talk about a rock star, idol of a Hodgkin’s patient.
Ashley departed the hospital to move back into an apartment she shares with several room mates in Keene, NH.
If the holiday spirit strikes you, please visit her site and donate. Being 22 years old, independent, and unable to work she has a lot of anxiety regarding how she will survive until her social security disability kicks in.
For everybody who is anti-reform, please know that social security has been my only means of economic survival through my disease process. The disability insurance I did have purged me. The Government has done better by me than any for-profit business. From a business perspective, I am a bad investment, one big cost sucker.
Ashley is in the same boat and Right now, all she needs is to worry about getting better.

Friday, November 13, 2009

Are You Ready?

I have news. . . . .
Is everybbody ready for this shocker?
My PET scan showed NO SIGNS of lymphoma!
This means I've officially gone two full months without a reoccurrence of my cancer, and will hopefully be going many, many more.
I don't think I've gone this long cancerfree since 2006 or 2007.
This is a triumph worth celebrating, and I am with a trip to Heather's house.
X and J voted a while ago that it was time to ditch the short hair for some long locks.
J was especially adamant that this had to happen to signify the end of an era.
I think I'll go buy a hair brush and pretty head bands to control my mop of thick black hair.
Of course, with my success there is a price to pay.
My life is just one double edged sword.
My lungs show several areas similar to how the abscess that almost killed me presented.
Even worse, with my 60,30,60 mg ms contin regimen I can still feel where these infiltrates may be.
Trying to breath, cough, yawn, or talk with an abscess was more painful than natural child birth.
I know. I can compare the two.
With the length of my treatment I will likely always suffer side effects.
I have the option of taking prednisone, but this will kill the graft vs. host disease that is likely keeping me in remission.
We'll just keep praying that my lungs continue to heal.
Now that I'm not going to dedicate day in and day out to fighting cancer I can actually move on to other things. . . . like combating the long term damage.
I hope everyone will understand that a negative PET scan is not a magic wand that undoes all I have gone through in the past four years, but hopefully it marks a new beginning.

I spent yesterday sleeping and wondering if I’d ever get my energy back again.

Of course, low and behold, I did. . . . . . at 3 am this morning.

I was able to get up shower, dress (which is not something I do everyday) right alongside Xander who, as he’s tying his shoes to go to school, starts to gag like he’s going to throw up.

Of course, on one of the few days I drag myself out of bed with energy to shower and dress my son would be sick. Happens all the time.

I’m calling my sister since we were supposed to be spending a fun filled weekend with her in the family in Natick Mass. I think those plans may be cancered, like all my plans for the fall were, but that doesn't stop me from making them. SOMETIME, I'm going to have a good time again.

Our nephew, Preston, is a month old and neither X or Jon have met him yet.

I don’t know if now would be prime time to see them since several people were sent home with fevers from Xander’s school yesterday with suspicions of swine flu.

Jon and I are getting our shots today, hopefully in time to protect us if our son is a carrier.

I do think that if I contracted the swine flu it would kill me with my lungs in the condition they are, but that doesn’t stop other healthy defeatists from telling me it’s too late in the season to get the vaccine since it won’t be back around again until the summer. All I hear from this is you’re screwed.

With my luck, those comments are like cursing me with the illness.

Let’s pray it didn’t.

That comment ranks right up with the man who upon having my husband tell him I was going to Germany to see the same Doctor as Farrah Fawcette said, “You know she’s going to die, right?”

I know some of you have your jaws wide open in shock that people would say this, but J and I had a good hearty laugh over that one.

People are uncomfortable addressing illness, and I just try to remember that they want to say they right things, that they’re trying to say the right things, even if what comes out of their mouth is stomping on our hope.

As for Germany, it’s still in the back of our minds, except that with Reliance Standard cutting my disability payment it’s now, officially unaffordable.

I do think that if this companies’ action is a major cause of my inability to seek extended life saving treatment that I’ll throw a Hillary-fit like no one has ever seen before, and you all know I can throw some good ones.

Today, I’m anxiously awaiting the results of my PET scan.

I didn’t want my PET scan.

I have no contingency plan if it’s positive.

I was on “Plan Y,” remember?

Why would I want a diagnostic test telling me I’m screwed into more treatments? I’ve barely recovered from the last.

But Dear Doc is going to be out of the office for two weeks which means I wouldn’t have another scan for three weeks, which was fine by me, but not by him.

He’s flying over to Vienna for a conference on the latest, greatest treatments for MDS (myelodysplastic syndrome), which is a blood cancer caused by chemotherapies.

Yes, folks, chemotherapy can cure and cause cancer.

I think because he is hauling ass halfway across the world to learn about innovative methods of treatment for blood disorders that he can never again pick on me for the “alternatives” I use, which are really just treatments from outside the United States.

If he doesn’t bring me back some good treatments, I vote for a pretty present.

Dr. G did have a little talk about whether he would be calling me with the results or not and guess who won. . . . he did.

I’m going to hear them good or bad.

Since I’m going to be forced to hear the results I want to hear them NOW!

I didn’t get a phone call yesterday, which to me means it is bad and I was getting a day or emotional reprieve.

Jon took it as a sign Marc isn’t worried so he didn’t feel he needed to get to me right away.

The truth is probably that he was at a satellite clinic and didn’t even think about it yesterday.

I’m resisting the urge to stalk him for my results.

The good news is that the little boy with Hodgkin's who fled treatment with his mom last year is now cancer free! AJ is recovering well from her recent bone marrow transplant. She's only 7 days out and trying to bust out of the hospital, unfortunately where she is going to break out to is still up in the air.

Wednesday, November 11, 2009

My Name is Murphy


I think I may change my name to Murphy. This way everybody can have my circumstances explained to them quickly and easily, “This is Murphy, I’m sending her to you for a. ... stem cell transplant, wedge resection, radiation therapy, picc line insertion….. Just to warn you, everything bad that could happen will with her. It’s just Murphy’s Law.”

This way people won”t be blindsided when they try to do a relatively easy procedure, say a thorascopic biopsy, and have it plagued with rare, terrible side effects like air leaks, pneumothorax, severe dyspnea (that’s shortness of breath), and not to mention the fact that the biopsy yielded NOTHING to guide treatment.

Sounds like Murphy’s law to me.

Yesterday I finally did get a tidbit to help my lungs: Use my oxygen. This will help with the re-epansion of my lung by helping with diffusion across the lung tissue. The higher the levels of oxygen in my blood stream the less my lungs have to work.

I hadn’t been using my oxygen frivolously (only when I couldn’t breathe, folks) since I thought overuse of oxygen could incite these crazy free-radicals that cause cancer.

I know they sound like good cells, and I always did think my body was one big free radical, but their not.

I saw my DHMC team yesterday, I was blessed with both Marc and Anna, only to learn that no, the area of my lung with the pneumothorax may never heal. I may always have a little pneumo.

I’m seeing a pulmonologist that will probably say to just wait and watch my disease process as long as it doesn’t show signs of progression.

Alyea was so worried about my lungs and bronchiolitis obliteranshe was ready to send me for lung transplantation.

I think I’ll stick to my inhaler and expand my “pneumowacky” alternative meds, seeing as modern medicine has very little else to offer.

Today, SURPRISE, I have a PET scan.

I’ll keep you updated.

Monday, November 9, 2009

Random Thoughts

1. I think part of a best friend's job should be to immediately clear your computer history if you die.

2. Nothing stinks more than that moment during an argument when You realize you're wrong.

3. I totally take back all those times I didn't want to nap when I was younger.

4. There is great need for a sarcasm font.

5. How in the world are you supposed to fold a fitted sheet?

6. Was learning cursive really necessary?

7. Map Quest really needs to start their directions on #5. I'm pretty sure I know how to get out of my neighborhood.

8. Obituaries would be a lot more interesting if they told you how the person died.

9. I can't remember the last time I wasn't at least kind of tired.

10. Bad decisions make good stories.

11. You never know when it will strike, but there comes a moment at work when you know that you just aren't going to do anything productive for the rest of the day.

12.Can we all just agree to ignore whatever comes after Blue Ray? I don't want to have to restart my collection...again.

13.I'm always slightly terrified when I exit out of Word and it asks me if I want to save any changes to my ten-page research paper that I swear I did not make any changes to.

14."Do not machine wash or tumble dry" means it's dirty or I will never wash this -- ever.

15.I hate when I just miss a call by the last ring (Hello? Hello?), but when I immediately call back, it rings nine times and goes to voicemail. What'd you do after I didn't answer? Drop the phone and run away?

16.I hate leaving my house confident and looking good and then not seeing anyone of importance the entire day. What a waste.

17.I keep some people's phone numbers in my phone just so I know not to answer when they call.

18.My 4-year old son asked me in the car the other day, "Dad what would happen if you ran over a ninja?" How am I supposed to respond to that?

19.I think the freezer deserves a light as well.

20.I disagree with Kay Jewelers. I would bet on any given Friday or Saturday night more kisses begin with Miller Lites than Kay.


Rowdy Weekend Cancer-Style





This weekend I finally “woke up” and rejoined the real world.

I’d been wondering why people were pestering me about Thanksgiving plans, but apparently, it’s only a couple weeks away. I guess I should get around to figuring out what’s going on.


As far as the world goes, I’m still back on Labor Day weekend, the first time I was admitted for my pneumonia.

I'm still back on that day, X's first soccer practice, that I stood up to teach foot skills only to sit down after one child afraid I'd have trouble breathing and scare all the kids.

That's when I knew something was really wrong.

Yes, maybe this seems like ions ago to the rest of you, but time does change when you’re dealing with a catastrophe.

I’m sure it’s some sort of defense mechanism so you don’t realize that you’ve been suffering day in and day out for months.

I did have a relatively rowdy weekend, but all that really means is I left my house.

It does not mean what it used to: that I pre-partied with my friends, we made it to the club at midnight and home at 7am after having collected ten different numbers just to up my self esteem and confirm that I'm hot.

No, I didn't go to dinner theatre with drag queens that give lap dances or watch a gang fight in the street.

I'm glad I got those days out of my system.

Yes, I did leave my house and I did it without ever having to use my oxygen.

VERY EXCITING.

I’m not quite back to playing basketball with Xander (and believe me I tried), but I did walk the half mile back and forth from my parent’s house. I also tried to go for a walk in the woods, but I only made it through Xander’s fort, then to his house, which has a special sitting area just for me, but not to his blueberry patch.

It is really the little things you learn to love.

I also managed to brave a shopping trip with Jon that included TJ Maxx.

I hadn’t been to TJ Maxx in years and it’s like the store threw up all over itself.

Everywhere you look there is another thing, so many things, that nobody really needs.

We’re definitely a culture addicted to things.

I’ve had my desire for all these “things” beaten out of me by months begging to be able to breathe.


On that note, Let’s congratulate Dana Farber for a job well done. They have the highest survival rate one year post allo-mismatched stem cell transplantation than any other facility in the country that does over 150 of these yearly.

I always get a sinking feeling in the pit of my stomach when I read these things and think, “What?! You mean I could have died?!”

Yes, so I do have a little bit of denial, especially when after all these months I’ve had friends call and exclaim, “WHEW! You’re alive!”

Yes ma’am, I am, and I’m making plans.

And of course, let’s thank Dartmouth for keeping me alive and with my family.


After a successful weekend that included leaving my house to shop and go to a friend’s “open house” for drinks, I was still able to get up in the morning to chill with Xander.

Unfortunately, X doesn’t realize that though he’s decided I’m well enough to resume every normal activity that makes him happy, I’m probably not.

That doesn’t stop him from wondering why he doesn’t automatically have playdates on the weekend.

I don’t know how to explain it to him that I’ve been too sick to make advance plans.

We did manage to get some friend time in before Brynn and Nic came over, and whoa, did I ever let the monsters loose when I said it was plan making time.

We’re all about “traditions,” and if I was healthy, Nic and I would probably have some “tradition” we had to do once a month, but early December is a yankee candle/Christmas Tree Shoppe trip alongside Brynn's birthday.

Now, I’ve added an outing to NYC.

Yes, I’m taking the girls out for a weekend of rowdiness, even though Nicole thinks a “penthouse party” includes naked people from the magazine (it doesn’t, a penthouse is a sweet apartment on the top floor of a building, usually gorgeous), and that Brynn needs a lesson on “How to Say Yes to you” (as opposed to everybody else like so many do).

We started small in plan making, where they were ready to break out the video camera and resume our hibernation activities from last year, but then they quickly moved on to game nights on Saturdays and beyond.

As hard as it is to listen to what my friends do in my absence, it’s great to still be invited, even if it’s one of those days there is no way in hell I’’m getting out of my bed.

It's even better when I realize they've been waiting patiently so I can rejoin them.

I’m finally feeling relatively content with the state of my body, and so far, no signs of cancer’s return. It’s a big turn around from being unable to read the paper or not having the energy to sit at the computer to type, but I think I’m headed down the right path.

Sunday, November 8, 2009

Historical Legislation?

The House passed what is being called a “landmark health insurance bill” last night under severe controversy over the clear party split that will ensure, or mandate, insurance coverage for Americans.

Only one republican, Rep. Joseph Cao of Louisiana, voted for the measure in the final vote that won only 220-215. Thirty-five democratic representatives voted against the measures.

Prior to the vote, Democrats added an amendment to the bill sponsored by Rep. Bart Stupak, D-Mich., that prohibits individuals who receive insurance subsidies from purchasing any plan that pays for elective abortions.

House Democratic leaders agreed Friday night to allow a floor vote on the Stupak amendment to the bill in order to win the support of about three dozen Democrats who feared that the original bill would have subsidized abortions.

The abortion vote solidified support for the legislation, easing some of the fears of conservative democrats (http://www.msnbc.msn.com/id/33748707/ns/politics-health_care_reform)

This additional bill states that no federal money will help subsidize abortion or even any plan covering it. Abortion remains an elective surgery, much like plastic surgery.

As much as I support health reform measures and agree with the need for legislation, I too have my own fears regarding the bill.

I do understand the flip side opinion.

I think penalizing anybody who chooses to remain uninsured is simply un-American; however, this piece of legislation was added to the bill as a demand of the insurance companies.

Big insurance stated loud and clear that they could not function as a profitable business if "they were forced to insure all these sick people," as required through the bill by forcing insurers to accept people with preexisting conditions.

This is how the mandate was put into the bill, to satisfy the capitalists who profit off illness.

I think it's reprehensible, but I do understand that with so many stakeholders trying to get their hands in the pot how the mandate has passed.

I mostly fear that with this bill people will again become complacent with our system. The bill does not address "purging" of this sick, but disallows raising premiums to make them unaffordable to the ill.

Believe it or not, it also does not help me, who has insurance but is severely underinsured. Only in the most dire of circumstances- should I lose my house etc would I qualify.

It does begin to protect small business owners from rising private health insurance costs that can tally upwards of $25,000 yearly, thankfully, which I believe is much needed to help aid our ailing economy and provide stability for my generations’ future.

For me, At least the bill will provide a strong legal backing for any consumer, aka patient, complaints.

I'm am happy there is now going to be regulation of the industries that for so long ran rampant and grew from oppressing the ill, but I think there is much more to be done such as devising a specific means of oversight with penalties to the companies which still continue to practice oppressive methods of profiteering, such as Reliance Standard, which insured me for four years before “purging” me from their system stating that social security received for my child rendered their award null and void.

If I were to provide evidence that I receive social security to what I can only liken to loan sharks they would be looking to collect $20,000+ dollars in repayment.

This bill also will not directly address current problems of the inability to access care, specifically through mail order pharmacies that will not provide medication without procurement with credit.

In the upcoming months, prior to what we hope will be signed into law by the end of the year, legislation as to how, specifically, insurers will be regulated will hopefully be addressed.

Again, I'm afraid that people will become complacent with the bill and move on to the next vogue cause forgetting that many of us will continue to suffer until regulation takes effect. This bill will never recoup my lost income from being purged by reliance standard or stop the denials of claims which plague patients causing stress during all ready difficult times.

It is my hope that in future talks these patient fears will be openly addressed. I do think this is a monumental, historical step forward in creating change and moving towards transparent, patient-centered care.

Saturday, November 7, 2009

Let The Good Times Roll



Take A Second and look at the posting below.

Hopefully some of you will take the opportunity on this gorgeous Saturday to make your voices heard loud and clear in support of healthcare reform.

I’m confident measures will pass.

I’m at the very least confident that measures will pass for us in NH.

We’re fortunate to have several representatives that have been proactive in healthcare reform.

As much as I’d like to join the festivities today with a big sign attached to the back of my wheelchair, waiving my oxygen tank in the air, just thinking about it tires me out.

Spending the night at Heather’s, where I finally met my 3.5 week old nephew Preston, going to appointments in Boston, and checking out the toy variety at Toys ‘R Us on Weds. Night and Thursday put me to sleep for almost the entirety of Friday.

When I say “almost” I mean I woke up at 7 to get X to school and was back to sleep by 10:30am. I woke up at 4pm to hang out with the family until falling asleep again at 8pm.

I spent more time asleep than awake.

Everytime I’d wake up I’d listen to my lungs squeaking like Minnie Mouse and think “fuck it” before I went back to sleep.

Believe it or not, I'm also not making this decision entirely on what I'd like to be doing with my Saturday.

Apparently me joining throngs of people right now makes some of my loved ones uneasy. It's better just to quarantine myself on "the compound."

J's been a republican, anti-rally party pooper since I was pregnant, but this time I won't go into stealth mode and force him into the chaos. We'll stay right here, far enough out in the woods that no swine flu can find us.

Bronchiolitis Obliterans or no, I think I’m recovering.

I’m able to walk longer and longer distances without the extreme shortness of breath I was experiencing.

I’m going to start exercising again on Monday.

It is time to break out my “flirty girl” fitness tapes and remind my body what it’s capable of doing.

People can knock the striptease/ pole dancing exercise phenomena all they want, but it keeps my muscles coming back.

My mind is still reeling from an appointment that went from Donor Lymphocyte Infusion Planning to “we always have steroids if we need them.”

These two concepts are completely contradictory of each other, but I can’t say I didn’t see it coming.

I’ve thought about sneaking back to the steroids more than once in the past couple of months.

Of all the medications that I would possibly “sneak back to” it’s ridiculous that I’d choose prednisone, but in doing that I know I’d possibly be undoing all my hardwork of the past couple months.

I’d have another Fall of fruitless suffering.

At least now I’m finally well enough to start resuming my life and having some fun. I’m hoping he remission sticks so the good times can start rolling again.