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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Friday, April 30, 2010


I have finally escaped on the mini-vacation I've been pining after since January.
A vacation has been elusive for the past couple months.
It was starting to become a foreign concept.
Vacations were like a mythological creature that I'd heard of and sounded beautiful but had never encountered or an activity that I knew existed but would never have the privilege to enjoy.
I wasn't about to allow vacations to become one more thing I lost with my health.
Oh hell no.
I just needed some adjustment time to figure out how it could happen with my current abilities and limitations.
That means last weeks quesi-planned trip to stay at the Waldorf in Manhattan for four days with Xander and Brynn was canceled (or cancered) in exchange for a long weekend in the suburbs.
Hello Westchester.
I've officially transitioned to suburbanite.
Instead of The statue of Liberty, Times Square, and Fifth Ave (all on the agenda from last week) X and I have teamed up with my BF from College, Yanellie, and her two boys to have mother/son bonding time in the form of The Palisades Mall (the second largest mall in America), Kid City, and the beach.
Awwww, the beach. I've been fantasizing about the sand and waves for months. I envision a lot of beach time in my future, lying in the sun with my 100 spf sunblock, wide brimmed hat, large glasses, and tunics while listening to music, the squeals of childhood happiness and crashing waves.
Close your eyes and go there for a second.
It's Friday. It has probably been a long week. Take a second and get yourself centered. You'll feel better.
I know I am.
This is a mother/son bonding weekend since our men are off working, supporting our cushy existence.
Y's husband is in China on business leaving her pregnant with their 4 and 5 year old boys. He designs shoes for coach.
And yes, he is VERY straight.
Hence all the children.
J is working mandatory overtime this weekend.
While the men are away the women will play.
Today is a very special anniversary day for J and I.
Today is the ten year anniversary of our first date ever!
I have been with the same man for a whole decade now!
This should definitely file this under one of life's larger accomplishments.
In this era most marriages don't last ten years. It amazes me that we have been able to live in relative harmony together for this long.
I generally think it's near impossible to get two people to agree on anything, but then there are always the exception to the rules.
I'm especially amazed when a couple agree together to do something absolutely crazy.
For instance, in N. Korea a couple allowed their baby to starve to death while neglecting it to raise a virtual child at an internet cafe. When the baby's body was discovered it was nearly mummified.
J and I had enough trouble on agreeing whether to spank or not to spank, I don't know how two people put their heads together and decide, "Hey, let's ignore our real live, breathing, eating child and head down to the cafe to raise a fake one together."
Crazy is as crazy does.
Someday, sometime, soon, I will tell you the story of how J and I came to be J and I. It is quite the story.
But not today. Today I have plans. I'm on vacation!!!

Tuesday, April 27, 2010

If there is a possibility of several things going wrong, the one that will cause the most damage will be the one to go wrong
It never fails that after a long period of activity there will be a fluery of chaos at the end, like the final sprint for first place at the end of a marathon.
For all you athletes out there, it's like jonesies or suicides in training where you jog around the field or to each line until you escalate to sprinting every length or every line and back until you're huffing, puffing and heaving, praying you don't pass out, throw up or both.
 I've almost come to depend on this happening.
It happened the weekend I had my BFFs and their families from college over for a crazy festivity filled two days only to have j come home sun afternoon when I was exhausted and ready to cry and beg for a nap with a torn achilles heal. 
It happened in 2007 (yes, this is how long the luck has held. If it wasn't for bad luck, i'd have none at all.) when I'd finished my 9 months of chemo and transplant to make it clear to the other side only to have my lungs inexplicably fail. 
That was certainly a bodily marathon when I thought I had suffered through the worse.
It happened again. 
X had vacation last week, and we celebrated it by hanging out with friends and family having nightly sleep overs. We did a Chuck-e-cheese day and toys 'r us. He had baseball opening day. It was kidfest.
I did this after getting treatment Thurs. and Friday the week before and then treatment again the following Monday and Tuesday, forgoing my normal daily naps and my full comatose day that I need for recovery weekly.
My body was feeling it. I was dragging. I started day dreaming about our daily routine when X was in school, longing for the days when I had time to recover as I needed.
Of course, After a week off from school full of fun and festivities, X started complaining Sunday afternoon of nausea and an upset tummy.
We were suspicious. This is the child that broke a thermometer at five trying to make it read he had a fever. We called him a faker and told him no matter what he was going to school.
That was until he woke up screaming at 1 am Monday morning grabbing his ear and praying to God.
You can officially take me out of the running for mother of the year.
Not only did X have a raging ear infection, the tube placed in his ear drum last year was hanging on irritating his nerve.
I had an ear infection in 2007. It hurts. I took morphine. It compares to any cancer pain I've experienced.
The crying and screaming kept going until 4 am when I remembered we had tylenol with codeine stashed away from his tonsillectomy a year ago.
This allowed us to sleep peacefully until 9am when I could get ahold of our Doc.
In those hours, I was on auto-pilot. I knew I was in the final stretch. I knew relief would eventually come. I kept reminding myself that there was a reason for this. It was survivable.
That's why I've been MIA these past couple days.
I'm beginning to wonder why and how I keep going. Sometimes I keep going because I know I've come so far all ready. I keep telling myself that a conclusion is near or that the rewards will come.  
My life, somwhere womehow, has turned into one big final stretch, a daily push towards the end with events that sometimes require me to  push even harder. 
I just need to keep my game face on. 
I don't know what the reward for my life will be (On Monday it was X snuggling and loving me), but right now its building a lot of character. 
As if I need more of THAT.

Saturday, April 24, 2010

Me and My Old Me

If you had told me ten years ago that ten years in the future I would be with the man I had started dating a decade earlier, I'd live in a beautiful cape next door to my parents with a seven year old and a German Shepard, and I would reject a weekend in New York City staying at The Waldorf for a half-birthday party at Chuck-E-Cheese for my niece, driving in a MINIVAN, and opening day for my son's baseball team, I would have said you were crazy.
I may have died laughing.
Or I could have gone in the opposite direction.
I may have contemplated suicide on the spot.
I wasn't dating. I wasn't looking to date. I was NEVER going to get married. I certainly wasn't going to birth any of my own children.
I was certainly going to be a successful Manhattanite.
Living in a cape next to my parents house? No.
Returning to poe-dunk Charlestown was the worst case scenario.
A fashionable apartment in Manhattan's up-and-coming neighborhood filled with swanky gorgeousness? Yes.
But the alternate universe is the truth.
I did reject a free weekend in New York for time at home with the family.
I was worried about whether I could physically handle NYC with a seven year old.
I've always walked everywhere.
But I also really preferred the relaxation and comfort of staying home over vacation and bonding with the ones I love.
How is that for growing up?
My seventeen year old self never would have accepted this alternate version of life.
She would have balked and called the lifestyle a failure or common.
Hopefully, that's all the information the crystal ball would have shared, because if it had also said, "You will be 50 lbs. heavier with a hack saw neck and hairy back from having cancer for over four years." I definitely would have taken the razor to my wrists.
That's why we don't get to see the future.
We're different people under different circumstances and we don't have all the information.
It is similar to life.
We don't get to have all the information. We don't get to understand why everything is happening to us. We just have to have faith that there is a reason, and someday, we'll understand, because on that day, at that time, we'll be different. We'll be better.

Friday, April 23, 2010

Personal Dissonance

Personal dissonance is a psychological term describing the difference between a person's self image and their actual abilities. 

I've been battling with my own personal dissonance recently. 
The funny thing about cancer is that the world doesn't stop once your diagnosed. Your own world may seem to stop. It certainly takes a big detour, but everything else, everyone else, keeps marching on.
There are still school plays and cupcakes to be made.
Overtime illness becomes another responsibility that needs to be maintained and not the apocalyptic catastrophe originally imagined.
My actual abilities change day to day based on how my many ailments disable me.
It's hard to pin down exactly what I'm capable of and how long I'll be able. I certainly have thought for a long time now that I was capable of doing things I was not physically capable of. 
Merging your ideal self with your real self is a normal psychological stage of adulthood (though I can't remember exactly who said it and what its called).
 It occurs when you realize all your childhood dreams may have been just that: dreams. Reality hits and you recognize you can't/won't achieve everything you thought you would. You know you'll never be an olympian. You'll probably never be president, famous, or even rich and successful enough to own property anywhere in Manhattan.
I'm there. I'm at that point in my life. 
It always surprises me when I realize I've reached some psychological milestone I read about in college that shows I've matured.
I don't need to look any farther than the mirror to realize I've aged. My patchy grays and forty extra lbs ensure that I'm not mistaken for a teen anymore.
I feel like cancer should have stunted me. I should be frozen in time with the phone to me ear listening to my CT report.
You know what? It's not so bad. It's almost a relief. 
I had so many goals for so long hoping to achieve something great that would outlast my existence and continue to spread good. 
But those ideas couldn't all happen. 
I can't be everything I ever dreamed I'd be. I'm not wonder woman. It's not humanly possible. It's certainly not possible with my illness. 
And I finally know that's okay. HOORAY! 
I wonder how much my disease and suffering has contributed to my acquiescence to the fact I'll probably never do any earth-shattering, history making deed.
 I think it certainly sped the process up by shortening my life span, which certainly limited my achievement options.
 If I don't live to 38 I can't be president, now can I? 
It's a normal life stage and I'm happy to realize, despite the obstacles, I'm content with how I realistically see my life. It isn't as full of acedemic achievements, high level degrees, prestiges/powerful jobs and world changing projects, but it is full of love and contentment. 
I call that a success, but that doesn't mean I'll stop trying to somehow alter humanity forever for the better. It just means I know I'll be okay if I don't. 

Wednesday, April 21, 2010

Dad's Update

Hi To all

Spring is Here. The family has all got really good jobs and are moving up. Spring Fever has always improved everyones spirits. Leaves are coming out. Flowers are blooming. Life looks like it is starting all over again.

I didn't sleep much last night but couldn't figure out how to write this update either. So I stewed all night instead. The cancer is back. 2 lesions, 1 near the aorta, the other near the kidney. Hillary of coarse says
she expected it. That is why she asked for the CAT scan last week and they did the PET scan this week. They are still very small. You would not know from looking at Hillary that anything has changed. She went to Xanders Baseball practice last night. Still has lots of plans. She keeps telling Nancy and I that we are too protective.

Hillary has set her protocol for treatment. She is in complete control. Dr Gaudier is pretty devastated. I could see it in his face last week, even before the pet scan. The cancer has been easily control;ed with chemo. She is hoping to get off the steroid soon. Right now she can't breathe without them. Then let the graff do it's work. The graff vs host disease is fighting in her body. She is hoping the graff will win. Chemo is her last resort.

Not too up beat here today. Having a little trouble focusing. I went to put my cell phone in my pocket and put my mouse in instead. I'm glad Pat called so I would notice!!

Keep up the prayers.

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

My Answer to cancer

There is a new category of disease emerging within the diagnosis of cancer. It is chronic cancer. It is cancer that comes and despite treatment keeps coming back. It is a cancer that with modern medicine can be managed for years if approached properly. It's cancer that, though likely incurable, can be coped with to live a fulfilling life extending decades.
It appears this is the category of cancer I have. 
I hesitated to post this news. I
 didn't know the internet etiquette in announcing a reoccurence. I wanted to notify certain people myself.
Then Dad jumped the gun this morning and blasted an email to his
 update list. I imagine from there others forwarded his news on.
I guess I need to get my perspective of the truth out before news gets half way around the world that I'm on my
 death bed. 
I'm not.
My PET scan showed an area of
 herpermetabolic uptake, or a "hot spot," around my aorta. 
The aorta is the largest artery in the body originating in the left ventricle of the heart (
Good news is this tumor appears to have shrunk from previous studies.
Yes, reread the sentence. There have been previous suspicious CT scans. My doctor didn't explicitly tell me of the tumor's existence. I didn't ask.
I can still feel when my cancer returns. Years of experience have honed my internal diagnostic skills however, My body is actively waging an internal battle where cells proliferate to form tumors only to be attacked by my graft vs host disease. 
The GVHD itself could keep the cancer contained. 
Unfortunately, the steroids, by eliminating the gvhd, allow my cancer to return more easily. 
I am not, as my dad said, trying to stop my prednisone. 
I'm staying on 20mg until I see my transplant team in Boston May 3. 
It's all about quality of life. I can breathe. I can take care of X, have play dates, and take him to chuck-e-cheese. 
There are good reasons for my steroids. They keep me active.
Taking the steroids is not necessarily optional either. I'm continuing with a slow taper to gauge how much affect the prednisone has had on my improving lung function.
I do have another area highly suspicious of recurrent disease sitting near my right kidney. This density threatens the ureter and is possibly contributing to an increasing creatinine (1.4 for those of you in the know) and a steadily decreasing hemaglobin (low 9s).
I also have right flank pain. That's kidney pain, but I have plenty of means to take care of that.
The plan is to do what I have been doing. I'll watch myself closely, manage any symptoms, and report any increase in problems. 
I'll return to chemo when my cancer becomes symptomatic enough to interfere with my life. Meanwhile, I'll look into therapies that will gently place me back into remission hopefully without debilitating side effects.
I'll continue this cycle for as long as possible. 
I realize most people do not even realize the treatment path I have chosen is an option in cancer treatment. Many won't understand.
I certainly never considered this as a viable option for me. I was an all-or-nothing, kick-its-ass woman.
I didn't understand the mentality until recently. I didn't understand until December when I realized that dying was a very real, viable option (Yes, it took me that long to consider that my cancer could kill me. I'm a little stubborn). 
What you do when you get to this point is all you can do. You do the best you can with what you have.
I'll tell you what I'm not doing. I'm not curling up in a ball, canceling plans, and running to treatment. I'm making more plans. We're having sleep overs and going on (hopefully) family vacations. I'll still coach soccer.
That's my answer to cancer.
I may not be as all-or-nothing as I once was, but I am still a realistic, practical woman. The best possibility to kick cancer's ass is to fend it off for as long as possible. I'm taking the "if you can't beat them, join them" approach.
 I have realistically reevaluated my goals, and I plan on surviving for many more years.

Tuesday, April 20, 2010

GVHD vs. Prednisone

I open my eyes in the morning and they immediately burn like I've been staring into the sun for hours.
I wish I'd taken Dr. Dana's (The eye guru's) advice and put a hot compress on my eyes twice daily for ten minutes, but do you know how long ten minutes seems when all you're doing is lying down, eyes closed, with a warm pack covering them? And the warm pack never stays warm.
I wish I'd put the $12 for 3 oz. systayne eye drops into my eyes six times daily, but even with spending the cash and strategically placing the bottles on my nightstand, end tables, kitchen island, and purse six times daily is still a lot.
I wish I had kept taking the flax seed supplements even though they take up to a year to work, and even after a year of taking it, they had done nothing for my eyes.
It's going to be on to Plan C for my eyes, the primary site of attack for my graft vs. host disease.
Apparently, Twenty mg of prednisone is the official dose where the side effects of the medication started to wane.
It's also the dosage where the symptoms of my graft vs. host disease have started to present themselves, AGAIN.
See the image to the right shows. It GVHD of the eye in the first picture and a cured eye in the second. There is a cure that comes at a price of over $300 a month. I don't know if that is for life or for a fixed period.
The pain becomes so severe I'm ready to pay it.
With steroids, it was easy to trick myself into thinking I had a long term cure for my disease. Every problem associated with GVHD disappeared within a matter of days, but then those symptoms were replaced with another teratogenic (therapy induced) disease: Cushing's from the high dose of prednisone.
My weepy burning eyes were exchanged for an insatiable hunger and sugar cravings that had me packing away a dozen cookies in a sitting.
The frothy wheeze of my lungs and gasping for breath was replaced by a round fluid filled moon face that stretched my skin to the limit and had my hall mark dimple flattened
The ulcers in my mouth causing pain so bad even my teeth hurt resolved only to have hair appear on my outer cheeks and upper lip.
Fatigue to the point of exhaustion that caused me to spend day after day on the couch was taken over by an anxious mania that had me up all hours trying to do four grandiose projects at once because of the obsessive need to do everything with a sense of urgency only felt before when I was actually facing the possibility of death.
How is that for exchanging one bad option for the other?
Now, I have minimal symptoms from both the disease and the drug.
I would never replace the time and renewed love of life the medication gave me, even if it did come with 40 extra pounds and facial hair.
I just hope I don't end up a bearded fat lady with wheezy frothy lungs and ulcers in my mouth.
I'm getting closer to the point in treatment where this is a possibility.
I'm getting to the point where we'll see if leaving steroids is even an option.
It's a scary point.
It's a scary day.
Today I meet with my heme team to get my PET results. It's my first PET in months.
I'm curious.

Monday, April 19, 2010

Test Anxiety

First things first, I FINALLY loaded some of my jewelry onto the Cancervivor Arts Ebay Store. Everybody click on the logo and check out the shop. Jewelry making is one of my new therapeutic pass times. I hope some of you will enjoy it too. I do accept local pick ups and requests for customized jewelry.
I have a PET scan today.
That's a positive emission
 topography scan. It's the alpha diagnostic test to determine whether or not my cancer has returned. 
I'm not nervous, or anything.
No, not me.
I certainly don't have test anxiety.
I just woke up every hour last night thinking about something else that was stressful in my life. Then when I would finally relax, 
think about something happy, I'd only nod off for another 45 minutes.
That was after I took a mg of ativan just to fall asleep.
But, really, I required the ativan for the sudden overwhelming urge to vomit I got after eating our spaghetti dinner last night.
I'm blaming the feeling on the garlic bread.
It's certainly not because I'm stressed about my 30th PET scan, which by the way, if it's good news will look like graphic #1. If it's bad news, well, that would be graphic #2.
Hopefully, either way, Dr. G will let me access my scans so you can see how I light up like a Christmas tree. He hates having me show imperfect scans.
I say I am perfectly imperfect.
I'm was just thinking about child care and the events for x's and Lex's vacation this week.
I was worried I wouldn't wake up in time to stuff enough food into me by 9 am to tide me over for the day.
I take my food really seriously, you know.
Don't mess with it.
Okay, so these are all little lies I tell myself before every scan. I
 start to get anxious. I stress over distractions. I try to avoid the real, obvious looming reality.
Soon I will know what my body has been up to and again will either rejoice with more months of freedom or feel the weight of the world come crushing down, AGAIN.
I will always have test anxiety before major diagnostic scans. I think it's normal. I think every patient should have some level of realistic anxiety unless they're medicated into oblivion. 
It's a test that determines the course of your life. Plain and simple. That's scary.
So daunting I've been avoiding mine.
I used to count the days until my next PET in hopes I'd have two in a row showing me cancer free. Since that hasn't happened my enthusiasm has waned.
I now know to couple my PET scans with fun events to keep me from becoming a neurotic, frazzled, hot mess.
If you can't beat 'em, join 'em, right?
Today Dani's coming by with the kids for a while, then Brynn and I are going to squeeze a quick trip to the book store in before going to the hospital. Times before I've gone on vacation at my sister's house. The rest of this week I have X, and probably Lex, to do fun kid's stuff with.
I've been postponing since I really have no desire to jump headfirst into anymore treatment. If I get a positive result, my reaction this time will be different than before. It won't be a full force, call in the troops and send them to the front line response.
I will take my time to process the information and consider my options.
Harsh treatments in search of a permanent cure have debilitated me. I'm leaning towards easier treatments that I can withstand while living life. 
But maybe, that won't need to happen.
There are processes within my body that can send false positive results, such as brown fat and inflammation.
Dartmouth combats the brown fat issue by administering .5 mg of xanax, which interrupts the uptake of the contrast into the fat.
Preventing inflammation from appearing in me as cancer will be more difficult since gvhd is inflammation. Even my eyes will look like they have cancer.
Either way, Have a happy Monday, and say a prayer or keep your fingers crossed for me.

Meet The Candidates



Please join Working Families Win this spring for our Meet the Candidate Series.

With Congressman Paul Hodes running for the United States Senate this year, the 2nd Congressional District Seat will be open for the first time since 2006. Job creation, financial reform, healthcare reform implementation, wage, education, energy, international trade and military policy will all be critical issues addressed by candidates running for office.

Come to speak with candidates interested in representing us in the United States Congress and ask the key questions you feel are facing our families and communities.

Claremont-Monday, April 19th

Who: Annie McLane Kuster, US Congresssional Candidatee
When: 7-8:30pm
Where: Moody Building Conference Room
24 Opera House Sq., Claremont, NH
Call 603-504-2906 for more information.

Claremont-Tuesday, May 11th

Who: Katrina Swett, US Congresssional Candidate
When: 6-7:30pm
Where: Claremont, NH
Call 603-504-2906 for more information.

Keene- Wednesday, May 12th

Who: Annie McLane Kuster, US Congresssional Candidate
When: 7-8:30pm
Where: Keene, NH
Call 603-504-2906 for more information.

Saturday, April 17, 2010

Proud to be a Granite Stater

My jaw dropped when NH caught my eye in the Times one page blurb on health care reform.
That's all the "time" reform is getting now that the large federal vote has passed historically without GOP support. One page is all most americans can stomach after 18 months of political turmoil that's bound. To be remembered for giving birth to "tea partyers", "blue dog democrats," and had representatives calling out "liar" and "baby killer" like teenagers at a high school assembly, but little do people realize, or care, that the battle marches on at a state level.
The war has been won but smaller stateside battles will determine how new laws are implemented with each state watching the other for the most effective policies i.e. The ones that create the atmosphere that provides the best quality care for the lowest price. 
Move to me, sitting in my green pleather recliner in the pheresis room at dartmouth, bored, flipping through my fifth magazine. 
I saw the article, gasp, talking about creating an open market health industry and commending NH for its move towards transparency and informing consumers,(yes, people/patients, we are consumers. We're buying a product.) by creating its online hospital pricing comparison site. 

Previously, there was a marked difference in pricing between similar hospitals for the same procedure due to patient's (consumers) lack of knowledge regarding the costs at each hospital.
People couldn't shop for an MRI between three hospitals within 30 miles for the best deal like they could search for a lamp at Pier One, Ikea and Kohl's, even if the cost for the same exact test was $1100, $1550, and $2300. 
See it for yourself at 
How this site has affected health care costs is unknown as of yet, but NH's next steps are to study the factors contributing to rising health car costs and form a commission to implement the studies finding for providing cost effective quality care (Senate Bills 392 and 505 
The idea for a regulatory commission is just one example of how states are eyeing policies effectively implemented in other states regarding health care reform. Maryland instituted a commission similar to the one proposed in NH and has seen a 60 million reduction in costs while maintaining previous health outcomes.

I finally had a reason to smile after a morning of pheresis and years of fighting disease after disease and insurance after hospital over bill after bill. What will become self-evident in the future, informing health care consumers regarding the services they're paying for, has started to happen in NH.
Today, I'm proud to be a Granite Stater. 

Friday, April 16, 2010

Living awake but half asleep

Every week I have one day I spend half conscious.
I'm not talking about the "living awake but half asleep" zombie mode that all of us go through but can still manage to put our bodies on auto pilot and drop off the kids, go to class, clean the house, go to work, etc.
On these days, I physically can not stay awake.
Mid-conversation, mid-sentence, I will doze off. It doesn't matter where I am, what I am doing, and who I am talking to.
My body has decided it's exhausted and it's time to sleep.
Yesterday was that day, and it was a bad day to have that day.
I'd controlled my body to stay awake until the afternoon when I had my dad caring for me, pheresis, and I knew I could disappear without much notice.
That's all good except my Doctor's appointment was in the afternoon.
When Dr. G showed up in pheresis I was all ready cozy, curled up with a warm blanket, in bed.
I forced my eyes open.
I knew I had questions. I knew I had things to discuss, but they were all gone in my sleepy haze.
Of course I remembered to ask for my scripts just in case X and I do get to go to NYC next week.
But I didn't drill him about the results of my CT the way I would have.
I didn't even ask him for the copy of the report he had in his hand, which I started kicking myself in the ass for immediately.
CT results as I understood them: normal for me but abnormal. A site in my spleen of possible disease seen in March has diminished.
Yes, disease, as in Hodgkin's.
I appear to be in the new class of cancer patients that may always have cancer, but will manage it with the goal of extending a good time as long as possible.
Kudos to Good Housekeeping who tackled this topic in their magazine this month. It's an enigma to most people how and why you would live with a life-threatening parasite in your body.
My personal answer to that is that appears to be the best option, but the answers are all very personal.
That's all I really remember.
I only remember that because my mom called me later that night as I was waking up to ask the results.
I was drowsy and never should have taken the phone call. I forgot to mention that the site of possible disease had shrunk since March.
I could hear her voice getting more high pitched, anxious, and then panicked despite her trying to hide it.
She knows I hate to have to tell people my test results.
When I get positive tests, I suffer a severe blow that has my life flashing before my eyes, but then I need to go and tell all those I love the results and see their disappointment and fears on their faces.
It's not just reopening a wound, it's cutting it deeper. It's adding a whole other cut.
That is a portion of the reason I started writing.
I didn't have the emotional energy to restate my test results, my treatment options, my prognosis, etc. etc., and see the reactions on my loved ones faces.
We did decide to get a PET scan. It's on for Monday next week. I'm then supposed to meet with Dr. G to discuss the results.
I scheduled a hundred appointments in my quesi-wake only to realize now I can not/ will not be able to get pheresis at 8 am Tuesday until 9 am and then wait to see him at noon.
X has vacation next week.
My time feels more precious today.

Thursday, April 15, 2010

I've been cursing myself since starting the two hour prep for my CT scan for not wearing more forgiving (aka elastic waistband) pants. 
How's that to make you feel rolly polly? 
Not only am I suffering from nausea with vomiting and cramping with bloating and diarrhea, I'm going to ad a full liter of fluid to the mix. Let's add insult to injury. 
At least I'm getting the results soon and will hopefully have the remedy to my upset tummy.
I'm beginning to wonder how much more of eating with consequences I could take before I become conditioned to eat nothing but toast and ritz crackers.
It's been over three weeks now.
I'll be seeing Dr. Marc today during pheresis time for (hopefully) some answers.
This way I can continue to get in tip top shape.
I've all ready started regulating my diet.
I've gone back to power smoothies (though I never really left them) and trying to stay away from the sweets.
It's going to take a while to purge our house of my previous sugar cravings, but that's okay.
I have self control, especially if it will make me feel better and stronger in the long run.

Wednesday, April 14, 2010

For Kid's Sake!

This isn't the first time, it won't be the last, but I'm sitting at my computer with very little to say.
It's hard to convey how I'm feeling right now, so I'll summarize it, moody.
I'm moody. I flip from feeling one way to another.
I don't want this to turn into my personal bitchfest space, but I also don't want it to be a "holier-than-thou" platform either.
I can say that the trend of doing activities, like pitching to X, has continued.
I'm so excited!
X is playing baseball and can switch hit.
Being the over achieving alpha mom I was at the time, when he learned to hit at 18 months (before either hand showed dominance) I made sure he practiced hitting both sides.
We haven't stopped training him since.
I just thought it would be a cool thing to have my child do. It makes daddy proud.
X is also starting guitar lessons today.
We only have a $30 guitar from the toy section at kmart that X purchased himself. He never told us he was interested in learning until he decided to buy the instrument one day and then never put it down.
He wanted to know if guitars and voices could play alone. He can be a one man band.
J's taking him since I have a CT for this nagging, lagging nausea, vomiting, cramping, diarhhea thing that has made my life quesi-miserable for weeks.
The problem with my body and the prednisone is, I have never been chubby before, not even a little bit. I've been all skin and bones my whole life. It's difficult to bend over and manuever around my stomach. It feels like I'm pregnant, but I don't know if it's because I'm bloated or just fat.
Isn't that embarrassing.
With all my knowledge and training the difference between bloating and fat escapes me?
I'm seeing my local (as in Dartmouth) doc tomorrow to go over results of the CT and other blood tests to see if there is anything that can make me feel better.
I'm also beginning to wonder if this moon face will ever subside and if I'll ever max out on my weight.
At least I've finally made a conscious decision to strive towards health again, but that's not going to stop me from stopping at D&Ds for coffee and a donut on the way to pottery. That just makes me too happy.
Also with feeling better, I've started to delve into the news again.
UGH. I really wasn' t missing anything.
If you think our kids aren't affected by our current hyper-sexed culture where the intimate details of celebreties' relationships gone wrong are blared every 24/7 just know some third grade child announced to his teacher that he was seeing his doctor for his "sex and lying" problems.
My guess is he just has a lying issue, but if Tiger and Jesse James get attention for the sex, it must be cool right?
Just one of those things that downright scares a mom.
It's even trickled down. Zac and Cody (from the Disney channel, which I thought was safe) decided to sneak into a strip club using fake IDs and disguises last episode.
X won't be seeing them anymore, but who knows what will pop up where. I can't protect him all the time.
The question, "How many people have you had sex with?" was posed on a commercial on ABCs family channel during America's Funniest Home Videos.
Can't we all still pretend the answer is always one, my husband/wife? Just for the kids sake.

Monday, April 12, 2010

I’m suffering from pushing myself yesterday.

I’ll be lying around today, reading, relaxing, and recovering from the body aches and sniffles.

My favorite R’s.

It’s a good day to indulge in my low key hobbies, like making jewelry, watching TV and reading.

I have to admit, I don’t miss working that much. I don’t miss the obligations, the stress and the responsibility.

I’m loving the flexibility I have to relax if I want to, and I’m finally at a prednisone dose where I can relax.

Twenty mg is working out okay for me.

I have a love hate relationship with my prednisone.

One day I’m cursing its existence and necessity, pulling at my cheeks that can be pulled no more, trying to poke in where my dimples once were, wondering how I could go from model thin to a “big girl” virtually overnight.

The next I’m zooming around loving my clean house, making beautiful pieces of art in seconds and hoping I can maintain that feeling forever.

Then I’m back in front of the mirror, critiquing where the latest hair has appeared, wondering if I really have a mustache with sideburns or is it my imagination.

It is not my imagination. Steroids increase testosterone ,which increases the growth of hair, especially facial hair, while doing NOTHING for my sex drive.

It takes an army of nair products (both wax and bleach) to maintain my femininity.

Then again, I can accomplish just about every task my body will allow me, the dishes are done, the dinner is cooked, my home is organized.

On the flipside, I’m always anxious about if these tasks are done properly, if I’ll be able to do them again tomorrow, or if it makes J happy. I’m anxious about everything, because steroids tap into my adrenaline. Everything is life and death and has to be done NOW.

I’m finally sleeping through the night. I’m making that announcement after having two full nights of uninterrupted sleep. That to me is a trend.

It’d probably also be safe to say I have a love hate relationship with my body.

One posting can go from how terrible my body feels to how lucky I am to have it.

It’s a double edged sword, a blessing and a curse.

Lucky, Lucky Me

My tongue is starting to hurt with the threat of an ulcer forming on the right side.
This is an ominous sign. 
It is a warning from my body.
It's saying "something isn't right" or "you're about to get sick."
 One of my many specialists said personal signs of impending illness, like the ulcer that appears on my tongue, are common among patients like me, patients that are immunocompromised and always on the watch for indicators of illness. 
It's like an aura with a seizure. It's the transplant patient warning system, unique to each individual. 
I'm listening. 
I'm taking it easy this weekend: went to x's baseball practice, had friends over. 
Today was special. Today I decided to resume "normal" life. 
I pushed my body, just a little, to see what it could do. 
It's like test driving a car, but I've been living in this vessel my whole life. 
My current body is not the body I know love and accept. I lost that body in August along with my lungs. 
I haven't been able to psychologically overcome the events of this fall. 
The fear was paralyzing: the fear of suffering, the fear of not being taken care of, the fear of not having my needs met. 
Even if I denied these fears, I'd have terrible nightmares. 
It has taken this long to brave cultivating my body. 
I didn't (couldn't) push the limits or even see what I was physically capable of doing for fear of failure. Failure meaning exhaustion, respiratory distress or death.
Those are high odds.
 For the first time ever I had no desire to get my body back into tip top shape just in case I had to undergo more treatment. 
I didn't research myself into a tizzy or see a hundred different complementary practitioners while ingesting supplements of every variety. 
I did the tried and true methods, but I certainly did not work on working out.
 I think I finally hit the wall. I'd met my statute of limitations on suffering. I relinquished control. 
And that feels good, like a responsibility has been lifted. 
Trying everything and anything by any means necessary took too much of a toll.
 Now that I'm done indulging in guilty pleasures (who really needs to eat four cadbury eggs or two full sundaes on a sitting?), I think maybe it's time to start some regular activities. 
My body is allowing me to do normal activities!! 
I may be feeling ill, but not my lungs.
 I took a half mile walk, played catch, basketball and wall ball with xander. 
I had a regular, active day that we may have had a year ago.
We worked on the house together and made plan for camping and parties.
 I am so excited. I am so blessed something has gone my way. 
It's gone my way in a big way. I am not "normal," but I'm at a place I can accept and enjoy. 
My lungs are not the big limiting factor. I'm not stopping activity due to shortness of breath, cold sweats, dropping blood pressure. 
I'm stopping due to pain. Pain from exertion. Pain in my back that comes from who knows where. Chronic pain, which I'm lucky to have options for.
Pain I can manage. Thank you palliative care. Keep those scripts coming.
I even put some flowers in the garden. Well, X wanted his own garden so we sectioned him out a portion and planted together. It was difficult to get from siting on the ground to standing, but I'm digging holes! 
These are things I never thought I'd do again. 
Lucky, lucky me. 

Saturday, April 10, 2010

Lymphoproliferative WHAT?!

I started writing Marc and Anna (my heme team) an update email on Weds. after I saw my eye guy (who dangled the carrot and told me the cure for my eyes exists but is unaffordable) and realized I didn't have an official appointment this week.
When I started the update and it went on and on and on about my line, interventional radiology, my eyes and then my abdomen for so long I got tired, I realized I probably needed to be seen. 
With My regular heme team out of the office, I saw Beth an NP I've seen regularly in the past.
 Beth is an assessment rockstar. 
She asks questions in a manner that stimulates my memory allowing me to recall things I may have not otherwise told her.
If she could teach every healthcare professional how she achieves her line of questioning, I think most the world's medical mysteries would be solved. 
She came to pheresis to solve my problems anyway. 
Apparently, its been 3 weeks since I've been hospitalized for viral gastroenteritis, which is supposed to hit hard and go away. 
Mine hasn't gone away. It's stayed in a big way. I have nausea and cramping or vomiting with diarrhea daily. 
I've been subsisting on crackers and juice under the threat of pain and cramping so severe it will plaster me keeled over to the toilet before I pass out from exhaustion. 
These symptoms bought me an extensive assessment and may buy me a colo and endo next week in search of gvhd of the bowel. They considered another inpatient stint, but since the symptoms occur in direct response to eating, I have them under control.
There are a couple of possibilities for this problem, one being GVHD, another being a steroid side efect, and another being viral or any combination there of.
Of course, the viral possibility couldn't just be a simple normal person virus.
Oh no, it has to be a special version for the immunocompromised.
I may have viral phenomenon, which only made it into our realm of thinking because Alyea ordered and Epstein Barr Virus (EBV) Viral Load test when I saw him.
The scientific pictures at least look pretty. In Image one a. represents the original diagnostic lymphnode and b, c, and d illustrate positive markers within the liver.
Image two shows lymphoid cells in the liver strongly positive for EBV, and image three is the bone marrow.
This is my favorite, pretty. It almost looks like stars, which would be appropriate since our bone marrow is like the body's universe or solar system, creating our entire existence is ways we may never fully understand.
EBV is a virus 90% of us have, mostly asymptomatically, but can cause illness in post-allo transplant patients.
I thought I was far enough away from my transplant to have these problems.
Maybe not.
I have no idea what this is and when I googled it, the results for "Viral phenom" talked about marketing on the internet.
Maybe helpful for my writing, but won't help my health. 
I do know this could suppress my red blood cell making ability, making me anemic. My hgb has plummeted from 12 to 9.8 in recent weeks.
Iron studies were ordered.
When I got more specific and googled "EBV in post-allogeneic transplants" I found more information on my possible syndrome "Post-transplant lymphoproliferative disease," but with a name like that, I think I'll let the professionals deal with this one.
Hopefully they'll deal with it quickly, because I still have plans.
Mom, Brynn, X and I may be jaunting down to NYC during his upcoming April vacation. I've never brought him into Manhattan before for an extended stay. I can't wait.
Unfortunately, I didn't receive any information on follow-up yesterday, so it will be another weekend of my bland diet, but at least I know (or hope. keep your fingers crossed) that help is on its way.