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."

Get a playlist! Standalone player Get Ringtones

Tuesday, March 30, 2010

It's been one full week of nausea, vomiting, diarrhea, with a diet comprised of gingerale, cranberry juice and ritz crackers and guess who has gained 5lbs?
Yeah, that'd be me.   
Thank you steroids. 
Even the BRAT (bread, rice, apples, tea) diet can't keep me from swelling. 
Look on the bright side, At least all that fluid retention hasn't manifested itself into heart failure. 
Let's take a second to thank God for small favors. It is Holy week.  
 I have always enjoyed the magic of this week. Something about its ceremonies bring a feeling of mysticism, even to me, who confesses to not being the all-star catholic I probably should. 
I love receiving palms on palm sunday and pretending I'm living in ancient ages waving them during the parade. I like seeing the ash cross on peoples' foreheads and watching the faces of people who don't know the cermony thinking the world has gone mad, lighting the center of their foreheads on fire.
My favorite is the refreshed feeling of having received a blessing. I especially like that, at least for that moment, all my sins are washed away and I'm perfect. 
This week gives me a feeling that anything is possible, including miracles like walking on water and rising from the dead. 
 I always look for the sky to inexplicably darken at noon on friday when Jesus is said to have taken his last breath. Good friday is plagued with odd weather more often than not. And then, did you know, after Jesus took his last breath, he wasn't sent to heaven, which I think is what most people assume.
 If he did  Why would dying be a sacrifice then?
No, He was thrust into hell and had to battle satan on his turf, which he was able to do because he was without sin.  
This is why people say God gave us his only son. Jesus was killed and sent to the lair of his father's worst enemy. He was delivered to the hands of the devil. It'd be just like delivering your child to a seriel killer. 
But I'm off my Holy rolling tangent. 
On to the Good news!
 Andy is home! His counts came up enough so he can spend a few days at home before traveling to Boston. 
On Monday his family travels to boston to sign consent forms. 
According to my specialists in beantown, I'm looking good too. My lungs are clear!!!
 It's affirmative. 
It's official. I haven't been lying about how great my lungs have been. 
Dr. W, the pulmonologist
suggested I alternate my prednisone between 30 and 20 mg doses before lowering to 20mg in two weeks. I like this. I've been able to sleep. I'm not zooming around in manic mode. 
With any luck, tapering like this will have my back fat hump gone by summertime. 
Yes, you heard me: back fat hump.
 It's part of cushing's syndrome associated with excessive steroids. That and excessive hair growth with a moon face and massive weight gain. 
I've finally come to realize, and accept, that I am unrecognizable I'm so bloated. 
My dimples don't even exist since they've been swollen outward, but if thirty extra pounds and looking like a cabbage patch kid is the cost of breathing easy, I'll take it. 
The back fat hump wouldn't bother me so much either if x didn't insist on monkey biting it when he decided I was misbehaving.
 For those of you without rambunctious seven year olds, a monkey bite is a pinch with a twist, designed to inflict pain. I can thank j for teaching x this important life lesson. 
I've been given clearance to stay away from Boston until may 1 as long as I continue with photopheresis follow up at dhmc and send updates.
 I love it. 
I'll take it.
 This is some of the best news in a while. It ranks right up there with the likely passage of reform, my receipt of a life grant from Cameron Seimers Foundation, and andy coming home. It's a damn good week so far even if I'm still napping all day and eating crackers.

Monday, March 29, 2010

Thirty six hours. THIRTY SIX HOURS! That's the period of recovery in sleep hours from my galavanting sat. Night, just a laid back evening of shopping capped off by drinks and dinner that had me home by 10pm. Andrea told me I would sleep all day the next day. She told me to apologize to j for it. I denied it. I was feeling so good. She was right. X was right. My body had different plans. I fell asleep about 2am sat morning (had a little insomnia) and I dragged myself out of bed at 7 am fully intending on caring for x but fell sound asleep on the couch instead. I opened my eyes enough to hear x declare my punishment for blowing curfew. How does a 7 year old ground mom? He declared I would be stuck on the couch all day and then laughed. He laughed bc, ha ha, my ass was stuck to the couch all sunday since I was so tired. My body was punishing me and he knew it. Ha ha. The whole day I woke only long enough to drink some juice and eat ritz crackers. I moved from the couch to the bedroom about 6pm and that was my big activity for the day. I finally was forced to join the land of the living at 6am since I have appt in boston. Getting up was more difficult than usual since I slept and didn't get my meds. Ugh was it hard to move, but I got it moving. I'm out of bed. I'm off the couch, and my good time on saturday night, absolutely worth it.

Saturday, March 27, 2010

It is what it is

I'm feeling a little like a rock star.
I'm feeling like I'm getting my mojo back.
Getting a nasty virus and kicking its ass like a person with a normal immune system can do that to a patient like me. Healing like this makes me feel all warm and fuzzy inside.
Usually the process goes, step 1. nasty virus step 2. bacterial infection step 3. pneumonia step. 4 F***ed, hospitalized and spending the next six weeks recovering.
Not this time, no sir, not me.
I spent the majority of two full days (Tues. and Weds) unconscious, as I should have been, receiving great care in the hospital.
I remember feeling so thankful and so relieved that I was being taken care of and I wanted to make sure everybody knew how grateful I was about it without sounding like I had a cheesy case of the "I love you mans."
Then I was well enough help care for X Thursday.
Well, J did the majority of the care taking, but I had the capacity to parent which is more than I generally do at that stage in the process.
I've been laying low these past couple days, but I've been able to maneuver in society.
We went to see "How To Train Your Dragon " (loved it), and I was able to have ANOTHER girl's night.
This one kept me out until a wild and crazy 10pm!
I hadn't realized how long it had been since I ventured out into the adult world past the kiddies bedtime.
It's been a while.
It's been long enough that at 8pm X checked the clock and demanded to know where I was. He did this again at 8:05 pm and 8:10pm.
Apparently it's been so long since I've been out in the evening, X had set a curfew for me.
That curfew is 8pm or his bedtime
Being late for this curfew is punishable by groundation according to my little man, and I am definitely grounded. J is expected to enforce it.
At 8:54 X finally looked at J and asked, "Is it okay if we go to bed without her?" as if the possibility of going through the bedtime routine and going to sleep without me was so foreign he didn't even know if it could be done.
I really like the grown-up life thing, but I'll be sure not to get too attached.
Just in case.
I did just barely start getting the urge to eat back today so I'm not totally in the clear.
On the flip side, I did complete two more rounds of pharesis, and I've been able to have a life.
I'm making plans whole weeks in advance!
Here is another reason I'm feeling like a rock star: I was invited to a celebration party with Sen. Jean Shaheen (D-NH) on Monday. I've been tentative about celebrating the health care reform bill until it's completely finished with due process, but I'm getting more confidant.
The advocates are too, because some thank you celebrations have started.
And I was invited!! Me! To a party with Jean Shaheen, who I idolized from the closet in a republican household when I was a teen, because she was our strong female governor. The Jean Shaheen who has been a longtime supporter of things like stem cell research.
I know it's geeky, but whoa, I feel cool.
But where will I be Monday?
Meeting with with the Big Boys in Bean town.
I'm seeing my pulmonologist, Dr. G Weinhouse at Brigham and Women's, who I all ready love and would recommend to anybody, and of course, Dr. Alyea, my long time go-to transplant man.
I'm confident he's the very best as well.
We now can all tell where my priorities lie. The men who keep me alive outrank the lawmakers.
If it was a party with Paul Hodes it may have been a different story. He is an amazing voice for patients such as me. I know he worked hard a dedicated himself to the passage of reform, and I am incredibly thankful to him.
I can't wait to join in the discussions closer to home. There are some fabulous bills being reviewed in NH to streamline health care processes. I'll write more on those later.
I'm glad I've made it back to this point.
I do still think how I'm feeling and recovering is mostly miracle though. I've been blessed by so many things.
It also could be that since I am so backwards that an extremely rare freaky side effect like bronchiolitis obliterans with a survival rate of 5% could be cured by some steroids, zithromax, and voodoo procedure that's best evidence has come from a study of sixty people.
I always did like to be in that odd percentage.
When I was in school, I had to be an overachiever.
When I got cancer, I had to be in the rare 20% that didn't get cured by ABVD therapy.
It's just the type of girl I am. It is what it is.

Friday, March 26, 2010

And the bug marches on

I finally woke from my two day quesi-coma to the one and only thing that could get me up and functioning as quickly as I was laid out: Xander throwing up on me.
It was 2 am Weds. night, I had started my battle with the vicious virus on Monday night at 1 am and hadn't spent more than 45 minutes fully aware since that time, X's body was telling me clearly, it was time to get up.
My maternal instincts are stronger than any illness I have ever experienced.
When my bronchiolitis flared up and I developed a severely painful pneumothorax while watching "Fame" in the movie theatre, I managed to hide the shortness of breath and desire to scream for my life until I was out of view of the kids.
Even during my first transplant, when drugged cross eyed, I'd be my clearest in the presence of my son.
Even after two days of eating nothing (but lots of IV fluids), I was able to whip myself out of bed and get x into the bath his little sick voice asked for.
Of course, I whipped out of bed. I don't think there is anything that moves a parent faster than the sound of heaving and the sudden feel of gushy wetness.
There should be an alarm clock with a child vomiting setting as an option. If this option doesn't work there could also be screaming teething baby option.
For college students some genius created an alarm clock that after hitting the first snooze button would turn into a ball and roll around the room alarming so not only do you need to crawl out of bed to shut off the alarm, you have to find it first.
Now that's just evil genius.
Poor X had the same virus I had, but minus the diarrhea. Thankfully.
I only had to deal with managing one end of catastrophe.
J and I quickly changed the bed and J took care of the laundering the sheets.
I set about my usual mom routine of bathing Xander and then setting up a "floor bed" in front of the tv in the living room with his nintendo food tray beside him stocked with gingerale and crackers.
He spent the next hours watching cartoons between throwing up and taking sips of gingerale.
By the time he asked for a second bath at 5:30 am, I was half passed out and ready to pass responsibility off to J until he went to work.
Fortunately, J made the decision to stay home from work to care for his sick family.
I'd say we spent the time bonding in our illness, but I'd be lying.
I have no idea what he did with Xander. All I know is that X recovered a whole lot faster than I did in much the style I do
While X was at his worst, h kept whispering "thank yous" for every little thing we did for him. Every time we'd cover him with a blanket and hold his shoulders, everytime we'd change the channel to his show, and everytime I'd refill his drink he'd remember to thank us.
I was doing this just a couple days befor ein the hospital.
When I'm at my weakest, I have the bodily functioning of a two year old. Everything must be done for me. I simply can't do it for myself, and I'm so thankful and appreciative whenever my needs are met since I know I'd never be able to meet them myself.
My misery is usually combined with a huge feeling of gratitude towards whoever is working to fix me.
Hopefully this rubbed off on X, but he didn't need to feel this way for long, By the time I left for photopheresis (which I still received) X was claiming he felt "fabulous" just to get some food and drink out of J.
When I returned home, he was outside doing yard work with J and asking how he could earn money.
He was right back to where he is when healthy.
I kept sleeping for the rest of the day, and finally awoke feeling better about 3 am.
That's what happens with my sicknesses, I sleep and sleep and sleep until I can sleep no more, no matter what time that is.
I am psyched I feel relatively human. It may take less than a week for me to recover from this! That's almost like a normal person. J and I talked, and yes, he did think, hope or wish, that what I was experiencing really was a virus that I could just fight off myself. We had a little conversation about it.
I certainly don't enjoy going to the hospital but I do know I need to go there if the pain is so severe I feel I'm in danger of overdosing myself controlling it or the problem is so severe I'm worried it will cause some bodily imbalance that itself will kill me.
I think those are pretty black and white guidelines to get me to the hospital quickly.
I think X is going to take another day of recovery off.
I'm going back for more pheresis.
That's the plan, man.

Thursday, March 25, 2010

the stomach bugs attack!

Long time no post. Where do you think I've been? Off on a bender celebrating? Recovering from the celebration? Living it up bc reform has passed? Too cool to post now? Wrong wrong wrong wrong and wrong again. I was just getting a friendly reminder from my body in the form of a viral beat down that I am not well. I am delicate. I am fragile. And at any moment in time day or night the switch could be flipped and I'm back at square one: flat on my ass unable to move. I bet I had some of you convinced I was in the clear. Yes, that's where I have been. No celebrating for me. No fun interviews. Do you want to hear about the dirty details? It has been a while since I suffered so badly I had to be rushed to the hospital. Monday night after getting home from x's indoor soccer practice I felt fine and went to bed as normal. It was 1am when all hell broke loose, from both ends. I flew out of bed, making it just in time to heave in the toilet, cursing myself for the steroid induced munchfest I succumbed to earlier in the eveningthat allowed me to have so in my stomach: cookies, chicken, asparagus all partially digested in the mix. Then my stomach started to twist in knots and gurgle and scream and I knew I was under full gi attack. I flushed the toilet and turned around. Then I sat and sat and sat and sat bc somewhere between 9pm and 1am my ass had become a faucet. Never before have I experienced abdominal pain so severe (okay, I probably have, no pain that I drugged out of my memory). The cramping had me doubled over, the throwing up had my muscles in spasm, and all while I had to keep my bum firmly planted to the toilet. I kept thanking God for modern amenities. I couldn't imagine having to undergo this suffering next to a dirt hole. It's bad enough sitting on the porcelein or passed out on the tile in a bathroom less than 6 ft from my bed. But that's what I did. Oh the indignity of it. After the first round of this stopped I cleaned myself, brushed my teeth, chewed some ativan and prayed it was a fluke, a one time deal. When again I was torn out of bed at 2am to sit on the porcelein throan while spewing in the garbage pail in gut wrenching pain I thought, maybe, I was in trouble. But when the episode was done I still managed to drag my body back to bed, drenched from my sweaty chills and obvious fever and take some sips of water. It was then I heard j, in his ultimate wisdom, say "whenever I drink water after throwing up I throw up again." My stomach heaved. Gggrrreeeaat. Thanks for the support hun. Round three I finally tried to call "uncle." I asked j to bring me to the hospital only to be told I "just had a virus" and it "would be gone in 24 hours.". Thank you dr. J. You suck. FYI: The four previous years of manipulating my immune system for fun, my current prednisone aka immunosuppressive therapy, and trial photopheresis make a gi bug going around dangerous, even life threatening for me. There is no such thing as "just a virus," and any illness I have can not be compared to "so and so's" unless they too have undergone two transplants and have an immunesystem that doesn't knows its ass from its head. But would he take me to the hospital? Big no. Don't worry. If you're wondering how I really feel about this, if you worried I'm making my feelings to vague, I'm going to let you know how I feel. You would think I was some hypochondriac that liked to run to the hospital in the middle of the night, who has never had a real health problem in my life the way he responded. Maybe I have munchosens?! Maybe I just hang out and in my spare time think up ways I can disrupt my families' beauty sleep and force them into taking me to the hospital for giggles. Because I am THAT kind of sick, not sick ill, sick demented. I thought about calling an ambulance, mostly bc I didn't think I could get to the hospital with a clean set of underwear, but health reform hasn't kicked in that fast and the $5000 ride was certainly a deterent. Instead I discovered we had no immodium in the house and added 30mg of morphine to the regimen. It was then,with no hope of getting to a hospital bed, I succumbed to sleeping on the floor of the bathroom. My body hurt too badly to move the 6 feet btwn bed and toilet. My head was pulsating. Every muscle ached. I repeated the vomit/diarea process twice more, praying that benadryl, the one thing that may actually make me sleep would miraculously materialize, when my husband came through with some tylenol pm. It was now 5:30am. I announced to J, who was officially on the shit list, that I wouldn't be taking care of x in the morning (no, this has to be stated. It is not self explanatory in his world), and finally fell asleep. I woke to the sound of the phone ringing at 10:30 am only to realize I was too weak to move! I couldn't roll over I hurt so badly. My muscles were jelly. My mind in a haze. "Call for help." My mind whispered. "Call for help. Call for help. Call for help.". I looked around. Aha! There was my cell phone, within arms reach! I picked it up. The screen was black. Hhhmmmm.... I pressed the on button. Nothing. Maybe I was too weak? I tried again. Nothing. Maybe I just forgot how to use it? I tried again. Nothing. My damn lifeline was dead. Uurrrggghhh. It may as well have been a useless couple hundred dollar rock. I could see the other phone. It was on the other side of the bed: my husband's side. So so far away I might as well have needed to take a plane to get it. I mustered the strength and dialed dear ol' dad. Thank goodness for my parents. I'd probably be dead by now with out them. All I said was, "I need to be taken care of." And he dropped everything to take care of me. That easy. Unfortunately, had it not been I may have just went back to bed and gotten sicker and sicker. Not because I want to get sick but bc by that point that's all the energy I had. I was able to call the dhmc heme team to ask if I should be seen through the er or clinic and miraculously my doc was on to see and admit me for dehydration. Just a 24 hour stint thaat I barely remember since I slept through the whole thing. The beauty of being on palliative cares' service is that the masseuse was told I'd been admitted and came special to see me! I love BA. She also reminded me that I need to get in touch with helping hands, a service that will provide me with in-home massages for free due to my illness!! Yay. Needless to say, I've gone three days without the urge to binge eat from the steroids. Good news is: I'm recovering. I'm well enough to type, talk, roll over and smile. Good enough for me.

Monday, March 22, 2010

The Right to Be Healthy

"Successful is the man who can lay a firm foundation with the bricks thrown at him." -David Brinkly

We've taken a step back from the brink!
Health-con one has been averted.
Historic Health care legislation has passed!
This morning I'm breathing a huge sigh of relief.
For all the debate, and the nay-sayers, there are hundreds of thousands of us whose lives depended on reform.
There are hopefully millions of future patients who will never have to suffer the stress and anxiety associated with our current healthcare system.
Thirty two million people will now be able to receive insurance under the program and no one can be discriminated against based on a pre-existing illness.
Patients now have a safety net if a company raises rates to unaffordable levels during treatment in an attempt to purge them from utilizing their services.
My favorite part of the bill, which hopefully will be enforced to keep me alive, is insurance companies are now banned from placing lifetime limits on coverage.
In the summer of 2008 I was looking ahead to my second bone marrow transplant and dangerously close to reaching the two million dollar maximum coverage amount on my insurance.
I underwent a clinical study (which is paid for by the researchers or hospital) to prep for the transplant. Mass fundraisers were held and my treatment was never delayed, but I was looking at moving to Boston and paying out of pocket for a million dollar procedure.
Lucky for me (Divine intervention), my husband's company, and therefore our insurance policy, was purchased by a large corporation.
I, again, had two million dollars worth of coverage.
Not everybody is rescued by a loving community and divine intervention.
I had 856,000 in medical charges last year alone.
Eventually, I will hit the two million max again.
Now I won't have the insurance company dictating when I need to stop treatment.
I'm breathing a huge sigh of relief.
There is a great article and a link to complete text of the bill at
For a country that has defined itself and lived according to the precedents set in one page of text by our forefathers, I agree, the complex 2700 page bill is a little over-the-top.
Unfortunately (or fortunately), Our country has changed since it's inception.
If the constitution were penned today, there would be committee after sub-committee defining what, exactly "Life" meant. And then there would be more committees for "Liberty" and "The pursuit."
"Happiness" alone would have to be defined much the same way Bill Clinton needed a definition for "sexual relations," with all the media coverage and threats of litigation that accompanied the infamous 90s scandal.
Of course, Before any of this occurred, someone, somewhere, would draw up an incomprehensible flow chart illustrating what may, may not, could possibly, or should not happen in the process.
That's the beauty of America folks. We all have the right to be heard.
Now, we all have the right to be healthy.

Saturday, March 20, 2010

Birthday Magic

J and I underestimated the excitement any birthday celebration of a seven year old could cause.
Taking X, Lexi, and our nephew Carter to the grocery store last night turned into an all-out, energetic elementary school party.
All we were doing was picking out a cake for a belated birthday celebration for Carter.
Carter had to have his party canceled when nasty weather hit and turned out the power the weekend of his birthday. Going between two parents another hasn't been able to be coordinated.
We decided to give him a little somethin' somethin'.
The kids walked as fast as their little legs could carry them into the market while trying to maintain an appropriate level of composure under our watchful eye and headed straight for the bakery section.
X ran off looking for cupcakes, which he swore Carter need too and would like better, maybe for school, who knows what goes on in his head.
Carter wandered wide-eyed, wondering exactly what we were doing and how it was going to happen.
I led him over to the bakery section and dragged down the gigantic book of options.
His eyes got even bigger.
He immediately started jabbering, "I don't know if I can make a decision. Look at all these cakes." He started flipping through the pages, marking Scooby Doo, Bolt and so many others I ran out of fingers to use as book marks.
Finally in the middle he stopped and said, "Bolt. I like Bolt."
But he hadn't even made it to the NASCAR section yet, which I thought he would LOVE.
I quickly showed him those options and he changed his tune quickly.
J handled the ordering but the kids just didn't want this experience to stop.
The woman at Hannafords, sensing the excitement of a seven year old picking out his first cake at the bakery, joined in.
She offered them free cookies and showed them how to decorate them.
I left to start grocery shopping while J supervised. I was done by the time J had found a way to coax them from the cake stand.
The excitement and happiness was contagious.
It reminds me why I'm alive.
The joy in someone else's face, the sparkle in their eye of possibility is not something that can be purchased.
It's the most satisfying feeling in the world.
Well, one of them. . . .
It's a fabulous feeling doing things for others that have never been done. It opens a world of what-ifs, of possibilities that anything can be achieved, that the world is a good place, or that great things are in store for the future.
His actual celebration hasn't even started, but I have a feeling we're in for some fun today.
It's the first official day of spring (Holla!).
It's a gorgeous 60+ degrees and the boys have their first baseball practice.
They plan on spending the day outside before tonight when Carter's birthday celebration will begin.
We're just having dinner at home (with cake, of course. I may even ask him if he has a special request because he's been so damn cute) and taking him glow-bowling tonight, but in the eyes of a seven year old, it's his day.

Thursday, March 18, 2010

Happy Belated St.Patty's

I had to post in honor of one of my former favorite sloppy, green beer chugging, Irish Catholic holidays:
Happy Belated St. Patrick's Day!
I was in the spirit yesterday. I dressed in green.
It's hard not to get the feeling with a first grader in the house, especially a first grader who, the evening before, excitedly told me in detail how he had to use his green hair gel on Weds and wear all green clothes.
We ran into one of his little buddies after school yesterday and he, too, had begged his mom to face paint shamrocks on each cheek.
Who knew our future men would be so creative in appearance at such a young age?
Who knew the holiday would evolve into such a costume extravaganza?
It seems like holidays are evolving in America.
Easter in some families has become like a second Christmas with kids even writing letters to the Easter Bunny and getting Play Stations.
Have you heard what the tooth fairy doles out these days? The consensus among X's friends is $20 for the first tooth.
Maybe it's inflation? Maybe it's marketing?
I resent that with each year every holiday seems to get farther and farther away from it's original meaning and closer to the gimme gimme shopping craze of Christmas.
But whatever, I'll keep it real with my family.
Saying that, I'm going to post silly St. Patrick's Day cartoons with leprachauns, rainbows, and pots of gold.
Good news:I didn't write because I had a full day yesterday.
I started at 6:30 am and didn't get home or rest until 6pm.
That's a whole "normal" day people! I was able to drive to where I needed to go, do what I needed to do and not collapse from exhaustion.
This is amazing. It's such a great feeling.
Only a few months ago I was taking
steps just because I could finally take them. I was walking to walk it had been so long since I was able.
I wouldn't have predicted being able to return to a quesi-normal routine.
I'm astounded and loving it.
Tomorrow I'm taking a girls night out.
I had been so wrapped up in recovering, physically and emotionally, I haven't had time out sans family since December.
Time really has flown, but DECEMBER? Wow.
What's the date?
Dinner at Brynn's with her and Nic and seeing "Alice in Wonderland."
The Disney version was a favorite of Heather and me growing up.
I also, almost, read the book. Almost. I started but was never a big CS Lewis fan.
I am, however, a big Burton fan. I'm especially a big Johnny Depp fan.
How could a group of girls go wrong?
I'll tell you how. . . I have pheresis again today.
I am now on a two day a week schedule for every Thursday and Friday.
But it does feel good to be on a schedule.
It feels good to be back.

Brain Drain

You know when you wake up in the morning and immediately have to jump out of bed and then you have to perform IMMEDIATELY in the semi-conscious, eyes blurred, confused mental haze you leapt from bed in?
Do you know that feeling? Have you had those days?
That's where I am. That is where i have been. I'm stuck in the half awake mental block state.
I feel like I've been here for months, years maybe, never able to complete a full thought or complex task.
It's the feeling of waking up with a laundry list a mile long of to-dos, trying to organize them in your brain, and then once you get your body to comply, standing, looking around and wondering, "what do I do now?" or "What did I need to do again?"
But then I know I need to do something, so I start to putter. I start picking things up, moving them around until something that needs to be done comes to me.
My mind has certainly become. . . . . simpler.
I have lost the capacity to have a simple morning routine.
You'd think it would be easy.
I try to do the same thing every single morning or every single school day. You think it'd be second nature, that I could do it on auto-pilot.
It's not. I have therapy induced brain block.
My brain feels like mush, like the fried egg from the "this is you on drugs" commercials from the 80s. It could start leaking out my ears any minute.
Not even a cup of coffee can jump start my neurons.
I have so much to do, and yet, nothing ever seems to get accomplished. I have so many ideas but none that ever seem to come to fruition or completion.
I feel like a slacker/failure/whatever.
I feel lost.
This bothers me.
What the mind perceives is the individual's reality.
I've never before in my life had to deal with problems like body image issues and confusion/stupidity.
The vain images in the media never affected me, but now I'm noticing how biased the world is towards the thin and beautiful. Even the ads for "curvaceous" woman do not feature curvy women. Then they are followed by ten other images of diet pills, diet ads, diet agencies, teeth whitening straightening, hair coloring, dying, etc., etc., etc.
The message to be beautiful or els comes from everywhere.
My body bothers me, but in a lot of big ways, like that it malfunctions and tries to kill me.
That is still my largest complaint, because even the irritation of having to see my swollen face in the mirror and buy a new wardrobe that fits will not keep me away from dragging the fried chicken out of the fridge. . . . .for breakfast.
Life is short.
It's the mind haze chemo brain that has really gotten to me.
My most prized attributes are derived from my brain. I feel like I've lost myself. I've lost my personality, my sense of humor, and now how I appear.
Loss is certainly a huge them in dealing with illness. Since my battle began it seems to be one problem after another.
Unfortunately, there is not much that can be done to help with maintaining brain function and organization.
I keep writing. I am constantly learning, trying to keep my brain sharp. Brain teasers, soduku, nintendo DS hasn't helped so much.
We'll see. Now I'm going to go wander around in circles.

Tuesday, March 16, 2010

Of all the parents, the healthy able-bodied red blooded american parents of claremont soccer players in grades 2 and 3, guess who got suckered into coaching indoor soccer? Okay, stop snickering.
The community center didn't twist my arm to hard. There was no gun to the head. 
They simply said if I wanted my first grader to play with 2nd and 3rd graders I had to coach. 
I said okay, with d pledging to be by my side. 
Well, life happens. D can't coach. I would probably kill myself trying to talk and walk at the same time, traumatizing the kids with my agonal breaths in the mean time. 
I'm sure the sight of me struggling to breathe, ready to pass out and still coaching attached to an oxygen tank would inspire someone else to volunteer, but not this season. 
Jon has taken over: torn achilles, boot and all.
 I assist. I manage. I supervise.
 Maybe someday I'll get back on the field. 
During basketball season I stepped in once to cover a passing drill, but even the small increase in movement while talking loudly was beyond my capabilities. I did it, just in a cold sweat with a lot of huffing and puffing worrying that any second the the world would go black, my bladder would let loose and I'd go into respiratory failure in front of 60 kids and their sidelined guardians.
 I have high hopes I'll be back coaching this summer (with help of course). It's looking like I'm on track. 
The bone density scan I had came back......... NORMAL! 
Do you know how long it's been since I heard that? I don't. It's been that long. Even with all the steroids, radiation, chemo, early menopause I have normal bones.
Yay me.
 My appt with the home team went well. I have fab labs.
 We worked out a plan to keep my central line from clotting. I will now spend the majority of my day (3x)flushing two of my three lumens with heparin. 
The third is all ready clotted and would require tnk to bust that clot and work.
 I find I'm more compliant with these burdensome therapies if I attach them to an established routine. 
I have a basket with flush supplies in the bathroom and will flush the lines when I brush my teeth.
 To protect my skin, I put sunscreen on in the am when I brush my teeth. Then I strategically place bottles of sunscreen (or eye drops, mouth wash, whatever) where ever I commonly am for convenience: the end table, night stand, or center console in the car for example. This way I may use my eye drops at least two or three times a day since there is no way in hell I'll ever manage to coordinate six plus hot compresses. 
Do you feel me or did I go on a tangent there?
In conjunction with my appointment, I was able to bring the small toy store I'd accumulated for Andy (thanks Dr. Houde and valley orthopedics. He'd been wanting the moon sand and wouldn't let me leave without setting up the hoop). 
I'm finding it easy to support andy, but difficult to help the family. 
I can't relate. I've been on the otherside so long. In some ways, I don't know if I want or can relate to the family. 
I hate seeing how stressed and scared the family is.
 As a patient, I can focus, keep my eyes on the prize to get well. I ignore the stress it places on my family. 
I'm not sure how capable I am of supporting the family, but like anything, all I can do is my best. 
With this being said, I'd love to hear suggestions as what may make this easier on the family and caregivers.
 Andy did spike a temp and is currently taking antibiotics. He has some mouth ulcers but is generally tolerating the chemo well. He will be going to Boston Childrens in the next couple of weeks to undergo his transplant.
The family will need a garmen for travel (it's vital), gas cards and meal cards are also helpful. Andy can still receive cards at ChAd 1 Medical Dr. in Lebanon, NH.

Sunday, March 14, 2010

It's a miracle!

I can breathe!
It's a miracle.
It definitely feels like a miracle.
My chest is not rattling. My lungs are not wheezing.
I'm not running out of air moving.
I haven't woken up in the middle of the night listening to my lungs struggle through mucous, coughing and hacking and trying to get out what ever had a hold on them.
I don't feel like I may drown in my own spit.
I've actually slept through the night two nights in a row!
Not having to worry about your lungs drowning you in your sleep does help in the rest department.
I do think God and my faith has played a strong part in this change.
Keep those prayers coming.
The photopheresis treatment alone would not have produced these results. Photopheresis takes time, generally months.
I do think the addition of flonase to my regimen has helped by decreasing the secretions in my sinuses and overall congestion.
I was going to get very addicted to decongestants if I didn't find an alternative.
FYI- nasal sprays are some of the most addictive medications available. Overuse causes rebound congestion. You'll never get off the stuff, same with sudafed, etc.
I also think having whatever infection or virus I had clear up contributed to feeling better, but I'm calling this one a miracle now.
The hardest part in coping with my lung failure has been that I really thought God would never hurt my lungs again.
I thought I'd bargained that possible side effect out.
Losing my ability to breathe was my worst fear.
I have meticulously loved and cared for my lungs my entire life.
It was a big slap in the face to have them fail. I felt betrayed, but I know I'll never be given a test I can't handle.
I just wish I wouldn't be tested so much.
I have great faith that my lungs will be restored to a point of functioning I am comfortable with thanks to God.
It's all ready started.
I'm tapering to 30 mg of prednisone today. FINALLY.
I'm starting to feel like me again. 
It has taken months but I'm finally adjusting to the fluctuations in my body and emotions.
 I was worried this time may never come. 
After my brush with death in Dec. I was trying to be as pious as possible.
 I was on a strict spending freeze. I was anti-vanity.
 I'm trying to keep my soul in the best condition possible. 
I was forgetting the all important balance. 
Pious or not, I still have needs, like clothes that fit for example. Lucky me, I've never had to deal with weight gain before. I was really shoving my body into clothes it didn't want to be shoved into (especially the girls, which actually grew along with the rest of me this time).
I started the acceptance process, this time, first by trying to change my outlook. I'm trying to remember my exterior is just a shell. It's not me. It's not how I am. It contains my essence. 
The problem with just that is I don't even FEEL like myself. I've never dealt with body isues before. It's a whole new thing for me. 
Finally getting clothes that fit certainly helped. It just took energy and effort that I wasn't willing or able to put in before.
I finally ditched the oxygen tank bag provided for me by the oxygen company that distributed the weight unevenly making it too hard for me to carry, hurting my back, and fit nothing else for an LL Bean backpack.
The backpack makes it so I have the strength to carry the tank. I can ditch my purse, and combine. I've been looking like a pack mule for months.
Ironically, hopefully I won't be needing my tank anymore, but if I do I'm ready.
I hit up Kohl's and target for some feel good clothes. 
It's amazing the power of jeans that fit and look decent.
It's humanizing. 
Illness, especially cancer, is not only dewomanizing (I've lost my hair, grown hair in places it should not grow, gone menopausal, gained and lost a range of 60 lbs), it's down right dehumanizing.
I feel like a freak of nature with all these side effects. 
Of course, I finally come to terms, and now, hopefully, my body will start to heal.
I'm on my way.

Friday, March 12, 2010

What the hell?!

I woke up this morning with pain in my knees so terrible I can barely walk!
Yesterday's treatment went well.
So well, in fact, I managed to stay awake, leave, go to LL Bean to buy a bag for my oxygen to combine the O2 and my purse, and then go get a much needed haircut from Andrea at MR. T's.
I went home, took a much needed nap, and then managed to do a pretty project before falling asleep.
I fell asleep only to wake up at midnight with knee pain. I took some instant morphine and went back to bed.
I woke up again at 3 am with knee pain so severe I couldn't sleep. I reached for the morphine and fell back asleep.
Fast forward to 5:30 am, I woke up, in pain, and decided to test these knees that have kept me awake all night.
They hurt so bad I can barely walk!
I wobbled around my house almost in tears before I reached for my morning usually morphine and more instant morphine.
I now understand why the nurses get nervous when I am in pain. It takes a lot to alleviate my hurt.
Four years of treatment will result in a tolerance.
This IS NOT a known side effect of my treatment.
There are not really any known side effects of my treatment.
It's a new treatment with a new medication (uvidex). Most people report fatigue. Some people report headaches.
I am also receiving treatment on a new machine that has only been utilized a month. This shortens the length of therapy from 3-4 hours to 1 hour 16 minutes yesterday.
Changing the length of the procedure is a relatively unstudied variable. Who knows what problems it could cause? Or what benefits?
What I am happy to report, focus on this people, is that last night while I was waking up with knee pain, my lungs were not rasping. I had a a little wheeze.
This morning, I am not rasping at all. I am not even wheezing!
Just another example of the double edged sword of treatment.
Would you lose your legs to save your lungs?
Would you lose your lungs to save your life?
I thought, maybe, with all this happening, I should send out an email update to the docs. I have ideas of how I'd like treatmet to go. I'm feeling good. I want the steroids decreased. That would be FABULOUS. So I blasted them an email:
Hello, This is Hillary St.Pierre. I started photophersis on Weds and wanted to send a quick update regarding my status. My tunneled central line placement was uneventful last Friday; however, the line has all ready been threatening to clot despite my daily flushings. Two lumens were heparanized overnight Weds but still posed a problem on Thursday and the third line did not draw back at all. I'd like to consider taking a baby asprin to prevent more problems.
My first day (Weds) I experienced severe fatigue with chills post treatment. A CMP was ordered before and after yesterday's therapy. Yesterdays treatment, however, was uneventful.
This morning, unfortunately, I'm having severe bilateral knee pain. It's required 15 mg MSIR q 3 hours through out the night and I still rose barely able to walk. I've taken my 60mg MS Contin to control the pain and function. Who knows where this came from, but I can guarantee it wasn't from crazy Hillary skateboarding on a half pipe.
I'll watch this.
Now, for the good news, my lungs feel great this morning!
The mucous and chronic cough are alleviating. My SOB is improving. I'm not sure whether to attribute this to an infection clearing, but I don't really care. Something is working!
I am hoping to taper my prednisone next week from 40 mg to 30 mg. The side effects of the steroids are driving me crazy. My face is so swollen it is painful. I'm constantly anxious.
I would appreciate any guidance or requests for testing any of you deem necessary before I drop my dosage another 10mg.
Thank you so much, take care, and have a great weekend.

Hopefully, this will get a response to my questions.
Now that my knees have been drugged into submission, I'm feeling good about today.
My grant from Cameron Seimers is coming in this week. The first purchase, a digital camera for Andy. I haven't been able to see the little guy with my own treatment starting, but I'm going to swing up today.
Xander has a little infection that has kept him away.
We did not get the grants for the Charlestown Police Department Energy Efficient upgrades. The town passed building the department, but no grant help for solar anything.
I'm disappointed. I really wish I could receive feedback as to why we were rejected to improve my technique.
The project had a 5 year pay back period! It would have saved $5000 yearly in utilities!
Who knows.

Anticipatory Side Efffects

Anticipatory nausea is a phenomena sometimes seen in Hodgkin's patients.
It's the tendency of a patient to associate nausea so closely with treatment that even thinking about the treatment can cause nausea and even vomiting.
They think, therefore they are.
It's most common in females with Hodgkins. I'm guessing due to the sensitive impressionable age it hits. 
When I started to undergo treatment, I was advised to take ativan the night before chemo to stave off this problem. 
I was lucky. 
The thought and anxiety of treatment alone didn't cause nausea. 
Looking at a hospital bed did.
I would get so sick I thought I'd never be able to work as a bedside nurse again. 
Ha, did I fool them. I won't be working again anyway. 
This psychological conditioning manifests itself differently across patients as diffusely as coping. One patient thought she saw her doc in the grocery store and proceeded to throw up. 
Anticipatory nausea is a very real conditioned response to treatment. 
I think I now have one better: anticapatory fatigue. 
Something about the anxiety of knowing I have a big procedure coming that I don't want to think about, deal with or cope with knocks me flat unconscious the day of treatment. 
Oh what a difference a day makes in the life of me. I had almost forgotten what it was like to be so tired it's painful, to not want to lean forward or turn around because th effort is too much.
Almost forgot.
 The steroids has sent me into a whirlwind of busybody activity. I've been on the move since dec, constantly. 
The first day of photopheresis I got my reminder. 
Treatment descriptions from providers always include the side effect that I'll be " a little fatigued."
 They're right if "a little tired" means I have no motivation to do anything, can't imagine doing anything ever, and I can't keep my eyes open to stay awake unless I'm actively doing something, which I won't for the aforementioned reasons.
I'm hoping it's just the conditioned response of sleeping through stressful days. We're going to let time tell on tis one.

Wednesday, March 10, 2010

All Good, All Day

We're only having good news today.
It's a good day today.
I don't know why the sudden change.
It's a huge change in tune from yesterday.
I didn't publish the unfinished rant, but I will. Look below to my gripping from only yesterday morning.
Talk about a mood swing. Talk about a change in circumstances. Maybe it's the spring weather, the melting snow, the sun, and birds chirping.
Maybe it's the fact that yesterday I finally stayed at home doing things just I wanted to do.
Maybe it's the fact I finally bit the bullet and admittedly that though I'm bigger, I'm not THAT big, and put on some nice clothes that fit.
I feel human.
Today I feel accomplished.
I think it's probably because of the great news I've received about Andy.
Andy's little brother is a perfect match for his bone marrow transplant!
Andy has a donor!
Even better, after nine days of chemotherapy, he hasn't experienced any side effects.
Please pray that he doesn't.
His family did shave his head last week in anticipation of the fall out, but so far he's still running around the unit playing ball with his pole.
Last Thursday, he had X, R, and I playing basketball and dodgeball. The boys had to be spoken to for getting too rowdy.
Andy's phobia of dogs has suddenly disappeared!
Before last week when he came to our house I had to strategically put our dog where Andy would not be.
I had no choice. He would ask and ask and hyperventilate if I didn't.
Last week, he tried running up to the therapy dog even though he wasn't allowed to touch her. Molly (the dog)had been in an isolation room and Andy has special precautions.
We didn't get to see Andy this weekend due to family illness. X doesn't like calling.
Hopefully I'll see him today.
I owe him a camera. I had brought him our old digital that is past its prime to play with, but wouldn't you know it, the camera was dead.
I left Andy with him telling me, "You better bring back a camera."
I will, of course, cameras, computers, etc. are great coping mechanisms and therapeutic tools, especially when your stuck in bed.
Andy also LOVES to receive cards.
He'll be at Children's Hospital at Dartmouth for a couple more weeks.
If anyone wants to storm it up and send him some cards, send them here:
Andy P.
One Medical Center Dr.
Lebanon, NH 03756
How could you not send some love to such a cutie?
I'm off to start my first photopheresis treatment. Send some love and prayers my way too.

Tuesday, March 9, 2010


I pumped my gas and drove off without putting on the cap or shutting the door. 
I guess I was distracted. 
It happens to the best of us, right?
 I feel like I'm coping well, but then little signs like this pop up. 
I start getting irritated with my hair. I can never get it right. I pull at my face wishing it was back to it's normal size. I change outfits. I change medications regimens all in an effort to fix whatever is wrong.
Because something is wrong. Something is very wrong. I just don't want to pinpoint what.
It's amazing that even after four years I resort to denial as a defense mechanism.
I put on a happy face. Everything is okay.
But I am bothered.
It's starting to creep into my personality. 
I'm having trouble making jokes. I'm having trouble laughing. Concentrating. Thinking. 
Maybe if I just get it all out. 
First, my Dad's update is from his view. There are a couple inconsistencies.
I am not oxygen dependent. 
Oxygen is the only proven therapy to assist in improving lung function. Evenif I am just improving my PaO2 levels from 96% to 100% there is a benefit in hopefully preventing further lung fibrosis. 
It also makes me feel better.
I wear oxygen at home because I like it, not because I'm  hiding it.
So, there, Dad.
I am still able to drive myself and get around independently. I relish my independence. I have not had a lot of offers to drive, and I really hate to ask.
I can say I'm generally happy with the state of my lungs and am praying that the photopheresis will work in preserving them.
I'm praying for another miracle.
I'm praying to be restored to health.
I don't like my doctor, etc. calling my choice voodoo. I don't like my central line, AT ALL. I don't like the pain and the amount of pain management I have to take. I don't like that nobody wants to take away my pain management because that means there is no end to the pain in sight.  

Update From Vic (aka Dad)

Hi Too all

Xanders birthday is tomorrow March 8th. He is turning 7. He had a big birthday party yesterday.He had 10-12 kids over for a few play hours. The spring weather was awesome. The trampoline was a big hit with 1st graders and for Hillary and Jon. I have got to learn how to tap all that energy. We could solve all the worlds energy problems if we could harness the motion, speed and endurance of a 1st graders birthday party.

This week has been a little stressful. Hillary had her central line put in for her next procedure. I get very worried with the central lines as that is what got septic and almost killed her the with the first 1. She has had this procedure probably 10 times now. She has more scares on her chest than I can count. Fridays line to her artery near her heart was put in without any trouble! Monday she has a bone scan. Not sure what that is. Wednesday, Thursday and Friday she starts photo------
something. It is where her blood is circulated under ultra- violet lite. She is not allowed to go out into the sunlight while doing the program. This program is scheduled for 6 months!!
It is a procedure that will hopefully help her lungs. This is used mostly on lung transplant patients. Her oncologist says somehow it works but doesn't know why. He called it voodoo medicine. It may work but we are getting to the last of the trial options. Hillary has added 40 lbs from the steroids. The extra fluids are putting a lot more pressure on her lungs and Heart. As the ween her off the steroids she is not able to breathe and is back on oxygen. She did manage to stay off the oxygen while the kids were at the house for the birthday party. She still wants to hide it from as many people as she can. She still wants to be independent and thinks she can drive herself to these appointments! A lot of people have offered to help and I wish she would take them up on some driving and sitting with her. Nancy has taken wednesday - Friday off to her. She forgot to tell us about Mondays appointment.

Xander, Hillary and Nancy have also been doing trips to Dartmouth because Xanders best friend, Andy was diagnose with Leukemia 2 weeks ago. Andy is a first Grader. His prognosis is not good. Andy's Parents do not speak much English so it is difficult for them to understand or talk with anyone about it. Xander wants to help but was close to breaking down last week. Way to much emotion for anyone, especially a 1st grader.

On Wednesday we will find out if the $60,000 grant we wrote for the Charlestown Police Station is approved. Hillary still wants to stay active. It going to be a tough summer. Especially if she can't go out in the sunshine. I do have to say her painting and crafts are pretty amazing. Some great looking hobbies projects.

Well thats it for now. We will just keep taking what life gives us. We keep our plans flexible. We are able to react like a cat, even if it is Garfield!!
Vic, Nancy, Patrick & Grace, Allen, Pierce, Preston ,Heather, Jon, Xander and especially Hillary

Monday, March 8, 2010

Weekend Recovery

It's not even Monday yet and X is all ready trying to get out of school.
I'm also trying to recover from a party weekend I never dreamt of in college, the birthday party extravaganza weekend.
X officially turns seven today!
My baby is seven years old.
To celebrate we threw a birthday party for him on Saturday with some friends and his first grade class.
Neither J nor I was prepared for the anxiety, excitement, and chaos that surrounds a seven year old's birthday, especially one that includes the entire class.
The excitement started at 6:55 am, with X waking me up announcing that Pokemon was on in 5 minutes.
X generally wakes up moving full throttle, but this was his "birthday weekend." He wasn't moving anywhere.
He was, however, letting me know exactly what I should be doing to prepare.
By 1pm I was relaxing on the deck enjoying the calm before the storm.
Did the storm ever come: in the form of 15 first graders.
First they conquered the trampoline and then they decided to take over the house while I set up a fake tattoo station in our living room while Jon and fam prepared birthday cake.
I underestimated the energy of excited children. For two full hours it was nonstop chatter, movement, dancing, squeeling, and smiling.
Thank goodness for all the friends and family who helped.
What I also did not anticipate was the feeding frenzy of little girls shoving and pushing to sit beside MY SON.
I'd heard rumors he was a little romeo, but he's made it clear he is more interested in his friends. I'm not so sure the girls are getting that message from the way they battled for his attention.
His birthday energy lasted from 6:55 am to 7 pm that evening and ended with his cousin throwing his favorite toy on the ground and x throwing an excitement filled, sugar high birthday tantrum.
Just the way the day should go.
Sunday started events all over though, because it was Cole's birthday party.
Needless to say, we need a break from the weekend.
Monday is not going to be our break.
I'm luring X to school with the fact it is his real birthday and he gets to bring in cake wearing a Prince's hat.
I'm running to Dartmouth for a bone density scan so I can have more evidence about how much i have destroyed my body.
As if listening to my lungs gurgle and wheeze when i wake up in the middle of the night, dragging a ten lb. oxygen tank around, and having tentacles protruding my chest isn't punishment enough.
My funk from last week hasn't lifted.
But I think it will start tomorrow. Maybe it's all ready starting.

Sunday, March 7, 2010

Long time, no post, and so much to talk about.
Friday morning I took the last peaceful relaxing shower I'll have for months.
My central line was placed that morning. 
Central lines provide a huge therapuetic benefit. It's easy access to my venous system. I never have to worry about poking and prodding for ivs, which would delay my treatment not to mention hurt. It will ensure the cells I receive remain healthy and have not been damaged during the pheresis process. It will also speed up the procedure, cutting the time almost in half. 
This is why I'm getting a line.
If it sounds a little like I'm trying to convince myself this is a good idea, it's because I am.
There is also the fact the procedure simply can't be done with out it. That was a surefire sell point. 
The downside is I now have a constant reminder badge of honor of my disese on my chest. Every move I make I will now have to consider my lines. 
When I shower, the line has to be covered first and then kept from being saturated. When I dress I have to find clothes that will allow it to lay comfortably and hide it. I have to make sure it doesn't catch. These are the simple superficial irritations of having a line. 
But they are irritations. They are a constant reminder of my fragile state-of-health I don't want.
Xander has all ready started assisting in hiding it's presence. 
During his birthday party yesterday, I wore a scarf to not scare his friends and take the attention off him even though it was 50 degrees out (a heat wave) I've gained 40 lbs, am menopausal and on prednisone. 
The hot flashes had me dripping. My glasses were steaming, but per X, I was not to remove that scarf.
This morning we picked out a summer scarf for Cole's Birthday party.
The line also needs to be flushed daily to keep from clotting. If it clots, medicine needs to be placed in the line. If it keeps clotting I need to go on coumadin (a blood thinner) to stop it. 
The list of inconveniences go on and on. It puts me in a foul mood. Doesn't matter how many times a procedure is done, I still experience the same emotions. The same depression, anger and anxiety. I lay awake and jittery the night before.
I haven' even discussed infection. We're not going to go there. What is done is done.
Moving on to the good stuff.
Thursday X finally suffered an emotional breakdown.
I could sense it coming. What poor little boy has two sick parents and a sick friend?He would get teary eyed and angry at night. We would talk, rip magazines, newspapers, and try all sorts of management techniques.
Thursday morning he woke up talking about "Pennies for Patients" a Leukemia and Lymphoma fundraiser for Andy. He told me the paperwork was in his bag and he was giving him all his money.
I said okay and we made plans to visit him that night. He left for school relatively happy.
Well, I guess Andy weighed on him all day because in the afternoon he demanded to know, from the entire first grade class, what each and every one of them were doing to help Andy.
His great teacher, who has been such a support and blessing this year, Mrs. Th, started the kids working on cards for him.
But Xander had all ready gotten worked up. He started to cry. He crawled into his cubby, curled up in a ball and cried and cried and cried. 
He looked up at her with his big eyes and said, "I'm so sad. I just want to die."
Heart breaking.
Mrs. Th escorted X out still in tears to tell me about the days events. 
The "I just want to die" comment is not new.
We know that Xander is anxious and depressed. He's been tested and diagnosed. We have tried everything within our knowledge to make these situations as easy as possible on him. He's had individual therapy sessions. We've done family therapy and couples therapy to work on the dynamics of our home. We had the genius founder of a great therapeutic recreation group (TRAIL) work with him individually. He has had testing. He's read books. I've read books. He's taken karate. He plays sports, all sports, into the wee hours, until he's exhausted. He has a trampoline (thank you Donna and Paul).
What X needs is an easier life. 
But any suggestions to make this easier on him I'll take.
I'm just happy he vocalizes these feelings so we know when he is feeling severely depressed and can intervene accordingly. 
When X got in the car he was stillbabbling.
The care kit I had put in a plastic bag had tipped and spilled. 
He decided this meant I was a crazy, unsafe driver and told me so. He didn't want to drive to see Andy with an unsafe driver. He wanted someone else.
I reassured him the ticket was a misunderstanding (it really was. I thought the limit was 65 mph), and that I would go slow.
He finally relaxed.
I told him we could go pick up presents for the birthday parties he's going to this weekend, for Andy, and one for him. He started to relax.
Then he started to freak out that all those presents would bankrupt us.
X, like his dad, fixates on money as a form of safety and security. Everytime I set a budget, X thinks this means that is all the money we have in the world.
He started to sob and hyperventilate.
I decided it was time to explain to him about debit cards, credit cards, and credit. How else could he calm down?
Suddenly, his crying lessened.
"So,. . ." he though, "if we wanted to go buy a tv, we could?"
"Yes, honey, we're not going to, but we could." 
I liked his reaction. He was finally really calming down.
"We could even buy more. If I felt like going out and buying the car you showed me last night (during X's newspaper tearing escapade, he'd pulled out a blue, used pontiac grand prix he said he wanted at sixteen), we could just go buy it. That simple."
"Mom, can you turn up the music?"
That's when I knew the tactic had worked.
Thank goodness. He spent the rest of the trip screaming Kids Bopp at the top of his lungs. 

Saturday, March 6, 2010

Two Am Wake-Up Call: Let Them Eat Cake

Two am is the peak time for acid production in the human body.
Two am is also the time I wake up nightly.
Acid reflux is a side effect of prednisone also. I haven't experienced
the terrible burning sensation in the chest. What I do experience is the nastiest tast
ing "med-mouth" ever.
Med-mouth is my word. You won't find it in the texts.
My mouth tastes like chewed up pills when I wake up, the prednisone e
specially. I know, since
the prednisone pills like to dissolve before they get to my throat forcing me to taste them.
I can only imagine what my breath smells like.
This calls for an extra- special toothpaste.
I was prescription strength Prevadent 5000 from Colgate which increases salivary production (to keep my mouth moist) and has extra fluoride (to protect the enamel of my teeth against the acid reflux).
Right now, I'm out. I need to get another script.

This acid reflux is tricky. Since it doesn't bother me during the day I like to think it doesn't exist until 2 am, and that it poses no harm to my body.
It does. I need to take my prilosec more frequently. I generally take 20 mg at night, but when you have six others to take at night sometimes I overlook this one that I deem "optional."
The prednisone not only wakes me up at 2 am from acid reflux, but then it tells me to EAT or sleep is a forgotten memory.
Guess what time it is?
I'm up and eating. Honey nut cheerios have been a favorite for years, but prednisone hunger has a mind of its own.
Just ask Brynn about our vacation to Alabama where she caught me eating Red Velvet Cake at 2am and I offered her a slice like it was perfectly normal.
In my world, it is perfectly normal. I'm coming up on the four year anniversary of my diagnosis (4/5/06). In her world, it's not so normal to wake up in the middle of the night just to eat cake.

Thursday, March 4, 2010

Ms. Moon Face

I don’t recognize myself.

I look in the mirror, and I no longer see me.

My face is so bloated. I feel like an orcha, or a puffer fish.

I feel like the fish on “Finding Nemo” or “SpongeBob” that suddenly blows up and floats around uselessly whenever something stressful happens and shocks them.

You may have noticed the lack of pictures of me.

I don’t want evidence of the terrible “moon face” side effect I’m experiencing from the steroids.

It’s a common side effect. It’s the first to hit me.

At first, I looked like a cabbage patch doll. I’d regressed back to my high school days before I’d lost my chipmonk cheeks.

Now, I’m so swollen I look like a face in the moon, hence the name.

It’s from “Cushing’s Syndrome.” I’m cushionoid.

Along with this comes other problems, like extreme weight gain (I’m clocking in at 138 lbs. after two months at 40 mg of prednisone), hairiness (every where, but of course on the face), and a fatty hump back.

Prednisone is not a drug for someone with body image issues.

Silly me, I’m feeling guilty about feeling like this! Is that ridiculous?

I know. I know. I’m entitled to feel how I feel, but with everything else going on my swollen face and lumpy body should be the least of my worries.

But it's not. It's just another inconvenience, another reminder that I'm not healthy, another side effect that requires intervention and monitoring.

Long term steroid use also increases the likelihood of diabetes and erodes bones.

I need to monitor my sugars and get a bone density study soon prior to starting bisphosphonate treatment for my bones. I've all ready started taking Caltrate (calcium and Vt. D).

Prior to any treatment, I was a poster child for osteoporosis- white and small framed. Now I've been menopausal for years (your menstrual cycle regulates the re-oxification, or bone building, in your bodies ladies. It is NOT safe to skip them entirely with birth control).

It's only a matter of time until bones start snapping and humpty dumpty has to be put back together again.

I was okay with these things when the medication fixed my lungs. I'm still okay, because I am still active, just not to the extent I was.

Now I can be pissed about looking alien AND not being able to breathe.

I don’t want to think about how I’m wearing my oxygen around the house again and how the chords present a death trap for Jon who is hobbling on his boot.

Jon never did have surgery.

His ankle was too swollen to visualize. He’ll be in a boot another couple weeks and then go for a follow-up.

Dr. Weiss will repeat an MRI. He may do the surgery at that time.

Big Thank You to Valley Orthopedics who rushed to our rescue, especially Dr. Houde, who has been a personal angel to us.

Unfortunately, they couldn’t manipulate the injury to a complete tear and do the surgery.

This route causes a longer period of impairment.

I am starting treatment tomorrow!

Yes, you heard correctly, TOMORROW.

I met with Dr. Ziggy on Monday to get a feel of Dartmouth. We met in the pharesis room.

Dr. Ziggy is everything a Dr. Ziggy mad scientist should be. He appeared with slightly disheveled hair and crooked bow tie with a toothie smile and Polish accent.

The lab at Dartmouth has been open for a year and a half. They do apharesis on 8 or 9 patients a year.

Apharesis, in general, is a new treatment technique. The studies proving its efficacy are very small, possibly the largest with 60 participants, but Dr. Z is President of the Apheresis Society.

Impressive, yes, but not as impressive as the fact that he included the nurses in my orientation. I LOVE THAT! A Doc who knows his backbone.

The procedure is relatively noninvasive and nonthreatening (or so they tell me, but I've heard that before), meaning I qualify. It's worth trying.

I'm having a central line placed tomorrow.

I have a long, tumultous history with central lines. Prior to my illness, I loved central lines. I loved helping place them in emergency situations so the patient could be revived. I loved the process and sterile technique. I was always offering to assist in their placement or help change the dressings.

I offered to do these things because I knew I could do them without causing infection. My nurse manager even stuck me on a committee on how to reduce central line infections.

As a patient, my relationship with central lines has suffered. Just about every one I have ever had has gotten infected. Some have sent me to the ICU with septicemia.

I'm not looking forward to another.

I have had so many I've lost count. The scars on my neck look like a road map through hell.

But I need one to undergo the procedure. The veins in my arms are not stable enough. A longer line would create too much resistance and render the treatment ineffective.

The line is the part of the procedure I'm dreading most.

After that is placed, I go in for treatment Weds.

Treatment entails being hooked to a brand new, state-of-the-art, made-in-VT, pharesis machine.

The machine withdraws my blood through one catheter and processes it, manipulating the white cells so they no longer attack my organs, and then sends the blood back in through another catheter.

DHMC's machine was purchased about a month ago. I'm, again, a test subject. It is looking good so far. It was estimated the process would take 3-4 hours at first, but the machine may cut it down to as little as 1.5 hours.

It also has helped with maintaining fluid volumes and electrolyte balances in patients.

Due to the blood processing, I need to be very careful around all UV rays for 48 hours after treatment.

I was sent home with sunscreen SPF 100 and aviator glasses. Even some indoor lights could cause a burn.

It's sounding a little like I'm turning into a vampire.

Doing this should stabilize my lungs at their current function. It will not improve them, but it should stop them from getting worse.

My heme doc called it "voodoo" when mom and I met with him to confirm my acceptance of the procedure because there are so few verified cases of success.

But this is what I want. I want my lungs. I want a quality of life. I didn't fight to survive to not be able to live. I'm feeling comfortable with starting.

Well, as comfortable as one can be.

I'll be doing this weds., Thurs., and Friday next week and then twice a week there after indefinitely. At the very least, I'll have treatment once a week a DHMC. I'll be followed by my rockstar heme team there, as well as closely monitored by my pulmonologist and GVHD specialist in Boston.

I'm so fortunate these great minds are willing to communicate and work together on my behalf to treat my body and soul. The Docs are getting in to holistic treatment. I'm impressed.