Both my pulmonologist and hematologist gave me the same advice: EXCERISE! I must continue to move and beactive. 

If this is what they're telling me is the best therapy. I'm going to do it. They both told me in very different ways. 

I asked weinhouse about how to improve my lung function through excercise, And he amost jumped out of his chair screaming, "YES, EXCERCISE! No doctor will ever tell you not to excercise!" He also said the "hyperextention" of mega athletes  lungs was just for show (so no cheating). But when you excercise and maintain healthy muscles that, even though the numbers don't "change" the ease of breathing and quality of life improve. 

My hematologist, instead of jumping all over me, excited that I may be interested in exercising inctead pouted when I asked for a wheelchair ordered and demanded to know when and why  would be  using one. 

So i have started stretching. I played soccer outside with x. I tried to run for the first time in years. My legs felt like lead. I don't want my body to be a burden if I can prevent it. I have to keep it movin.'. I'm going to work on routine. I used to excericise with x after school until I got too nervous about my breathing. who wants to have their child see them struggle. But x is all about helping me to get slowly back in shape. 

Xander, xander, xander

X decided yesterday morning that I was too sick to be left alone and that he would not be going to school.

 Transitioning x to and from me has been a long standing issue. 

There is no punishment/bribe/routine that I have found works when my 7year old really thinks his mom could be in imminent danger, and really, try to drag a crying, screaming, hysterical child off of you when you are barely conscious the day after chemo.

 Holding it together for the 1.5 hrs after he gets up bathes, has breakfast, etcs. Is hard enough.

 And he even gave the "family comes first" retort (damn that priotities conversation. You know the God, family, school, etc).

 I started making SOS calls at 8. I called J and handed the phone over to x. I thought this meant I was getting rescued and started to pass out. 

By the time I realized help was not coming, I was exhausted.

 X won and got to stay home, watching me sleep. 

One week this summer, I got chemo and he sat with me, watching me half sleep for days when he knew he could have been swimming or playing with friends. If he's willing to give up that, it's not so hard to reject school.

 I really wish I had the answer for this.

Did You know. . .

 That tylenol night time sleep aid  is actually benadryl at twice the usual 25 MG dosage. Diphenhydramine is the active ingredient in both and the generic version of benadryl. If you get pure benadryl with no funky additive, it's diphenhrydramine. Save yourself some money and buy diphenhydramine instead and get yourself a two for one deal.

I remember why I had to stop writing, I had to stop going to all these damn appointments because I chose to live over hanging out in waiting rooms.

 I've enjoyed myself a little more ever since, but since I'm waiting, I've been people watching, listening to conversation among families that just found out their loved one has less than a week left. 

It has to be one of the worst feelings. 

The practical one says "well we all knew this was coming."

 The other says something about delagating the belongings and the man, late sixties in a wheelchair, with oxygen in his nose whose glassy eyes are actually tears and who hasn't said a word. When I looked at him and smiled goodbye he looked away sadly. 

I woke up every two hours on the hour.
Sometimes I'd wake up to catch myself talking.
Once I woke up to Xander TELLING me to stop talking.
You'd think I was nervous, but I've got nothing. . . .. except X's first tournament ever!
It's in Merrimack and I'm pretty sure it's the first travel tournament I ever played in as a youngster.
Can't wait to see what happens.
I, myself, have decided to push the envelope a little.
I need to excercise.
I need more activity.
I'm starting solely and feeling better all ready.

I made it.

I did it!
Let's all congratulate me for finally forcing myself off the couch and pushing myself to get back to some activities I enjoy, despite my lungs.
I've been thinking, wanting, to start exercising but the time was never right. X was home so I needed to save my energy. We weren't on a schedule. I'd wear myself out and not be able to do anything all day, etc.,etc., excuse, excuse.
Then I spoke to Dr.  G yesterday who couldn't hide the sadness and disappointment in his voice that I would want a wheelchair.
He said he doesn't want me getting de-conditioned, which is a fear of mine too.
De-conditioning could be catastrophic to me.
So I picked X up and suggested, for the fist time this year, that we go out searching for salamanders.
His face lit up. This has always been one of his favorite things.
Every year our cooler turns into a terrarium for frogs, salamanders, and worms of all kinds.
We used to call X, Salamander Xander.
Then after searching we played soccer for a little bit.
I thought this was going to be my reasonable activity for the day, but co-coach had forgotten about soccer practice that night.
I didn't want to leave J frustrated with ten 7-8 year olds so I stepped up.
I did the stretches. I tried to coordinate the drills so the kids would do the most work with as little effort from me as possible.
J didn't get this since when I'd make a suggestion he'd come up with something else until he decided to scrimmage, splitting the team in half so I had to coach alone.
Probably one of the most exhausting things we could have chosen.
But I still did okay.
I couldn't always breathe when I wanted to make suggestions, such as when I brought a girl up from defense for a throw in and she threw it in towards our goal to nobody.
Oopsy, but I couldn't get the words out.
But I still had fun, and I really felt good after.
I'm working my way up, but I am still getting that wheelchair.

All I wanted

All I wanted out of Health Care Reform was for equal health care treatment for every individual with disregard to age, previous conditions, income, race, and whether they were insured or not.

I think this is what most people were hoping for, but no one could agree on the process and funding how to get to this point.

Luckily, some changes were made.

I'll no longer be threatening with meeting the 2 million dollar treatment maximum and having to pay out of pocket for care. I don't have to fear "recissions," where insurance cuts a patient when they get sick, and no more refusing coverage due to "pre-existing" conditions, that's discrimination.

But now, even as I jump for joy that I could possibly live with cancer as a chronic disease, I realize that new, innovative, life saving medications are out of reach for many.

Gleevac is America's new "miracle drug" has allowed people with non-Hodgkin's lymphoma and certain leukemias to lead a relatively normal life.
One gleevac patient I know, a young woman in love and of child bearing age, is considering having a child (with her doctor's collaboration of course).

Fabulous, except the cost of this medication is $5000 monthly.
Remicade, a chemotherapy agent Jon took several years ago for his crohn's disease, cost $8,500 monthly.

Neither of these new, breakthrough medications are affordable to middle class america.

Unfortunately, our health care system will never be truly reformed until I am no longer required to sign a "promise to pay" notice upon entering the ER with chest pain and shortness of breath.

It won't be reformed until every patient can receive the best medical intervention available at the lowest cost possible. There is still work to be done, and thankfully it is.

It's a wrap.
I'm done.
I have had enough with being sick.
I've been flat on the couch all week, sleeping.
I wake up about three times a day for meals.
I've vowed to do nothing to stay healthy for the Wedding October 2.
Cross fingers, say prayers. I'm so lucky this little nastiness was caught early.

Autumn, Again!

It's officially fall, another autumn, I've made it again to my fave season.

 I've spent the last four struggling for my life with bronchiolitis, tranplany recover, radiation, transplant prep. 

It was exhausting just writing that.

 But somehow I've managed to enjoy x grow and mature with my fam. 

We've coached soccer and apple picked every year. 

I'm so glad I didn't roll over and stay in bed instead. and now the effort has started paying, x is getting high grades. His last spelling tests were 99 and 105. 

Not bad. 

He scored 13 out of 15 shots to be first at claremont's U-8 shoot out.

 He gets to try at states on October 2. 

Of course, also the day of my bros wedding. 

We have worked how we'll manage both.

 X is just excited for the traveling and trophies. I have to say, I'm excited too.

I'm baaack

I was supposed to get chemo yesterday.
I decided I'd rather take a full dose once monthly than half a dose every two weeks.
Both will exhaust me almost equally so I'd rather have the long recovery time.
But I didn't get it.
I've been sick with a little virus that makes me vomit and gives me diarrhea.
I'm also still spitting up yellow infectious snot from my lungs.
I called to cancel the day to sleep since every time I avert death I over celebrate a little.
This time I over celebrated with my besties from colleges, Colette and Laurette and their families.
Colette promised pictures, but hasn't come through.

Apparently, you can't just call and cancel chemo due to illness without being seen.
Not even if you're me.
I was put on 750mg of Levaquin for an antibiotic.
That's the M16 of oral antibiotics.
And good thing since I spiked a temp last night. I got up to 100 before I shot it down with tylenol.
Anna was right. . .  .again.

I'll be ending photo pheresis soon.
HOORAY! I'll take it once a month, the first week of October and maybe, Nov. Then, no more. Good bye pheresis.
But not without success, My lung function have stabilized and the drop seen in my last LFTs were probably from my pulmonary emboli.
I no longer have graft vs. host of the skin or mouth. Thank goodness. Those were miserable.
The GVHD of the eyes has improved markedly, but I still slough out white cells constantly. I may go see Dr. Dana who has two options to possibly cure GVHD of the eye: autologous tears and some other steroid compound kind of like restasis.
Both are proven effect but neither are FDA approved.
This means the cure for my eyes exist, it's just going to be thousands of dollars.
For more info on pheresis see Dr. Moss's report: http://www.cancerdecisions.com/mrstore/index.php?main_page=product_info&products_id=636
Or for specifics on ECP (which I received) check out :http://emedicine.medscape.com/article/1131176-overview

I'm tired again. Hopefully I can stop kicking my own ass and keep up with the updates.

From 9/16

I keep saying I'm lucky, and I am, sometimes, but this discounts the prayers and support I've received. Thanks Val for those jewish prayers. I think I have christian based, hindu, and buddhists covered. And the jehova witnesses who come by do know us by name since we don't kick them out. I'm ok with any belief that says to love each other as yourself.

From Last Tues.

Ugh, I'm home, supposedly. I can't tell since part of mon, all weds, and all thurs are being spent at hospitals. My energy came back. I was able to walk between rooms wsithout oxygen. Then..... Pheresis. What's best in the long run isn't good for now. This always makes me S.O.B (not sob or an s.o.b. that's different), and exhausted.

Family Update From Vic

Hi Too all

You know I always like to start with good news but today I have so much I don't know where to start!! Hillary went to Boston yesterday to see her lung specialist and her Cancer specialist at Dana- Farber. Dr Weiss the lung doctor made her talk and walk around the hospital without oxygen and hitched to a monitor to measure her lung capacity. She never went below 90%! :-)     She was told to start exercising more and her stamina would improve now. She has just 1 more Photo- pharisees and she is done. She has been doing that since February, once a week. They take out her blood, filter it, take out something and send that under an ultra-violet light and then put it back in. It takes about 4 hours to do but makes her tired for at least a day. The even better news is she gets to have the 3 tubes sticking out of her chest since February REMOVED. She can actually be back to normal. Can even go swimming now.

Then  it was Dr Alyea at Dana Farber time. He could believe that she had so much trouble just last week and could walk into his office. He said that the blood clots have happened to only a few of his patience in his career, How did Dartmouth ever diagnosis it? 

Well here is the rest of the story. Hillary and Nancy went to the Dartmouth ER on Labor day. Hillary knew that she would not get quick treatment if she said that she was just out of breathe so she told them she had chest pains. She got right in and the did an ekg and nothing but did an Chest x-ray just in case and saw something so they did a cat scan.  The blood clots showed up on that and that is how she was diagnosed. 

If they had not found the clots that early the outcome would have been much much worse. Dr Alyea  reduced a lot of her meds and gave her a very good check-up report. She is back to somewhat normal.

So after a week from Hell we are on the upswing. Hillary will not look like the bionic woman for Patrick and Graces wedding on October 2nd. Her tubes will be out. She needs to get in shape to be able to dance!  She has soccer practice for Xanders soccer team tonight. We have a miracle.

Thank you all for the love and support. You can't believe how this moment feels. Thank you for all your prayers. Thank God he listened. Hope he forgives Hillary for her little lie.
Vic, Nancy, Patrick, Grace, Heather Allen, Pierce and Preston, Jon Xander and especially Hillary

Little Miracles

I'm a lucky girl.
I know you all may not agree seeing as I was clinging to life last week with two embolisms and a sinking white cell count, but luck is all in the small miracles.
Here is my most recent one.
For some reason I didn't quiet understand, I received an EKG in the ER.
At the time I was so confused.
I figured I had been labeled a "dyer" and all the bases were getting covered.
I had been placed in the pediatric "code" room.
The staff at the ER knows me now.
I got another EKG later, and the doc came in asking me where my chest pain was, to which I pointed to the bases of both my lungs (on my back, not my chest), because I had no idea what he was talking about.
What I had forgotten, and remembered when the "chest pain" symptom showed up on my discharge paperwork, was that somewhere in my crazed, hazed illness on the way to the emergency room at dartmouth, I got it in my mind that I was not sick enough to get a room right away.
I decided that if there was any hesitancy in getting me treated, I was pulling the chest pain card.
When I showed up and the waiting room was full, "chest pain" came out right along with "shortness of breath," just in case they wanted to make me wait.
I never had any chest pain!
I was being delirious. I take tons of morphine daily. I feel, essentially, nothing.
Except, thankfully, my blurting out those two words lead the ER staff to find my embolisms, which probably would have remained undetected had that craziness not gotten into my head and eventually killed me.
Thank God for little miracles and try to remember how lucky you are today.
I know I am.
Thanks for all the love and prayers.

How to email your provider

Very simple, important info here folks.
When calling, emailing, faxing your health professional you need to know what to say, and it doesn't have to be all smarty-pants medical jargon.
It needs to be concise and factual.
I feel like crap doesn't help.
I feel like crap with chest heaviness and a temp of 101.5 does.
Always know your temperature before calling a doc.
Here's my email update to my fab NP from Dana Farber.


Hi Melisa, Bad news. This is Hillary St.Pierre. Thanks for your email. It's been a while since I've seen you. I missed my six week check up due to illness/ chaos. I restarted chemo (Velbam) to maintain my cancer, and unfortunately have not been able to wean myself off Prednisone (I'm on 2mg daily). However, this past week I was hospitalized with bilateral PEs and pneumonia. My Vital capacity has gone down 7% since June (before the PEs were discovered). I feel like I'm failing more and am wondering what can be done to stop any progression. I'm taking lovenox and have switched my PCP prophylaxis from Bactrim to mepron due to ideological myelosuppression (my ANC was 290).  I need to know if I should keep weaning my photo pheresis (I'm down to two weeks a month), keep on, or just stop.  Should I get a pneumonia vaccine? Any vaccines? I'd just like to check-up.  I'll call the office tomorrow to schedule an appointment. I just wanted to give you a heads up. If there is anything special you'd like me to bring let me know. Thanks.

Hill

Simon Says

The one bonus of being deathly ill are al the cute litle doctors that run around trying to save you.
Not that, at the time, I really notice, mostly I wonder if they're competent enough, being my age, to handle my case.
I came to the ER on Monday after trying to treat myself for pneumonia with levaquin at home Sunday night.
I just really didn't feellike leaving the comfort of my own home and bed.
I always do this. I know I'm getting sick before it will show on an x-ray, and instead of running screaming to the hospital to stop the plumet downhill, I stay at home to "sleep it off."
You'd think after 4 years, I'd know it wasn't going to magically go away.
It never has.
I finally promised mom I won't do it any more, especially after the ER visit found two blood clots in my lungs along with my pneumonia.
I've gone through the gamet of symptoms this week: SOB, hallucinations, nasue, vomiting, diarrhea, uhg.
Now, I'm done and better than ever.
Who knows how long those buggers were hiding out in my lungs, waiting to kill me.
Thank goodness those were caught.
Even after all these years, I'm still not emotional ready to die.
I think coping would be easier if I didn't have X, if I didn't have responsabilities.
Then I could view myself as a complete burden, but I'm not.
I'm not ready, no metter how prepared I am.
I've always had a strong faith in God but the time just isn't right yet.

What would you do?

What would you do?....you make the choice. Don't look for a punch line,

there isn't one. Read it anyway. My question is: Would you have made the
same choice?



At a fundraising dinner for a school that serves children with learning
disabilities, the father of one of the students delivered a speech that
would never be forgotten by all who attended. After extolling the school
and
its

dedicated staff, he offered a question:

'When not interfered with by outside influences, everything nature does,
is
done with perfection.

Yet my son, Shay, cannot learn things as other children do. He cannot
understand things as other children do.

Where is the natural order of things in my son?'



The audience was stilled by the query.



The father continued. 'I believe that when a child like Shay, who was
mentally and physically disabled comes into the world, an opportunity to
realize true human nature presents itself, and it comes in the way other
people treat that child.'

Then he told the following story:



Shay and I had walked past a park where some boys Shay knew were playing
baseball. Shay asked, 'Do you think they'll let me play?' I knew that
most
of the boys would not want someone like Shay on their team, but as a
father
I also understood that if my son were allowed to play, it would give him
a
much-needed sense of belonging and some confidence to be accepted by
others
in spite of his handicaps.



I approached one of the boys on the field and asked (not expecting much)
if
Shay could play. The boy looked around for guidance and said, 'We're
losing
by six runs and the game is in the eighth inning. I guess he can be on
our
team and we'll try to put him in to bat in the ninth inning.'



Shay struggled over to the team's bench and, with a broad smile, put on
a
team shirt. I watched with a small tear in my eye and warmth in my
heart.
The boys saw my joy at my son being accepted.

In the bottom of the eighth inning, Shay's team scored a few runs but
was
still behind by three.

In the top of the ninth inning, Shay put on a glove and played in the
right
field. Even though no hits came his way, he was obviously ecstatic just
to
be in the game and on the field, grinning from ear to ear as I waved to
him
from the stands.

In the bottom of the ninth inning, Shay's team scored again.

Now, with two outs and the bases loaded, the potential winning run was
on
base and Shay was scheduled to be next at bat.



At this juncture, do the others let Shay bat and give away their chance
to
win the game?

Surprisingly, Shay was given the bat. Everyone knew that a hit was all
but
impossible because Shay didn't even know how to hold the bat properly,
much
less connect with the ball.



However, as Shay stepped up to the

plate, the pitcher, recognizing that the other team was putting winning
aside for this moment in Shay's life, moved in a few steps to lob the
ball
in softly so Shay could at least make contact.

The first pitch came and Shay swung clumsily and missed.

The pitcher again took a few steps forward to toss the ball softly
towards
Shay.

As the pitch came in, Shay swung at the ball and hit a slow ground ball
right back to the pitcher.



The game would now be over.

The pitcher picked up the soft grounder and could have easily thrown the
ball to the first baseman.

Shay would have been out and that would have been the end of the game.



Instead, the pitcher threw the ball right over the first baseman's head,
out
of reach of all team mates.

Everyone from the stands and both teams started yelling, 'Shay, run to
first!

Run to first!'

Never in his life had Shay ever run that far, but he made it to first
base.

He scampered down the baseline, wide-eyed and startled.



Everyone yelled, 'Run to second, run to second!'

Catching his breath, Shay awkwardly ran towards second, gleaming and
struggling to make it to the base.

By the time Shay rounded towards second base, the right fielder had the
ball. The smallest guy on their team who now had his first chance to be
the
hero for his team.

He could have thrown the ball to the second-baseman for the tag, but he
understood the pitcher's intentions so he, too, intentionally threw the
ball
high and far over the third-baseman's head.

Shay ran toward third base deliriously as the runners ahead of him
circled
the bases toward home.



All were screaming, 'Shay, Shay, Shay, all the Way Shay'



Shay reached third base because the opposing shortstop ran to help him
by
turning him in the direction of third base, and shouted, 'Run to third!

Shay, run to third!'



As Shay rounded third, the boys from both teams, and the spectators,
were on
their feet screaming, 'Shay, run home! Run home!'

Shay ran to home, stepped on the plate, and was cheered as the hero who
hit
the grand slam and won the game for his team



'That day', said the father softly with tears now rolling down his face,
'the boys from both teams helped bring a piece of true love and humanity
into this world'.



Shay didn't make it to another summer. He died that winter, having never
forgotten being the hero and making me so happy, and coming home and
seeing
his Mother tearfully embrace her little hero of the day !



AND NOW A LITTLE FOOT NOTE TO THIS STORY:

We all send thousands of jokes through the e-mail without a second
thought,
but when it comes to sending messages about life choices, people
hesitate.

The crude, vulgar, and often obscene pass freely through cyberspace, but
public discussion about decency is too often suppressed in our schools
and
workplaces.



If you're thinking about forwarding this message, chances are that
you're
probably sorting out the people in your address book who aren't the
'appropriate' ones to receive this type of message Well, the person who
sent
you this believes that we all can make a difference.

We all have thousands of opportunities every single day to help realize
the
'natural order of things.'

So many seemingly trivial interactions between two people present us
with a
choice:

Do we pass along a little spark of love and humanity or do we pass up
those
opportunities and leave the world a little bit colder in the process?



A wise man once said every society is judged by how it treats it's least
fortunate amongst them.

Who would want to be me?

UGH, I don't know what I did.
I don't know what the hell happened.
But blogger has been denying me for a week saying my password or login was wrong!
I then submitted a report and was DENIED. I don't have enough proof that this account is mine, apparently.
I thought, maybe, somebody stole my google cyber world.
But, really, who would want to be me?
I thought, maybe, I may never blog again.
That upset me.
I'm hooked. I'm addicted. I need an outlet. Don't ever let me threaten again.
I thought, maybe, I'd lost my mind to chemo and forgotten the name and password I've been using for the past two years.
Then I thought, maybe, I'd gone a little crazy with my meds and decided to play on the computer.
Uh-oh.
I finally called Danielle to confirm my gmail address. With her assistance, I typed everything in, and wha-la, it worked.
And not soon enough.
I've had big things going on. Big things.
Here is some of what you've been missing. . . .

I skipped over all the grieving stages and went straight to pissed after getting the results of my pulmonary function test.

My vital capacity is at 71 percent of expected; down from 79 percent in june, at the start of my velbam. 

I'd been requesting pfts knowing this chemo could damage my all ready sxrewed lungs. 

But again, my requests were ignored, again, or forgotten, to my own detriment. 

Ironically, my diffusion capacity has improved. That means though I can take in less air, I can process it better. 

Thank you photopheresis.

Fuck you chemotherapy.

I lied.
I can't stay away from writing. 
And unlike so many, I see no reason to keep it private. Wanting to do away with my fav things is a normal part of depression.
I wonder, is this normal?
 I finally peeked at an old friend's site. 
Dr. Steve Meersman was diagnosed with ALS in 2005 at 38 while working with me as a surgeon. 
I never read the "online diary" he kept while he was dying.
 I finally looked.
 I was hoping he wrote about how it felt to know he would die and how. 
I wondered what he worried about or felt for his kids and what it was like for him to know he'd never see them graduate junior high, forget about hs, college, marrying and having grandchildren.
 I didn't know how gruesome or terrible it would be. 
It wasn't either. It was straight forward, to the point. 
It monitored day to day activities but spared most emotion. 
I'm sure he spent just as much time staring into space wondering, what am I going to do? 
How will my family live? What is there life going to be like? And why can't I be in it? 
Luckily, my husband easily took over the breadwinner position and my previous head of household status gets us a decent ss check. 
Financially, they'll be just fine. 


While making my sons back to school brownies yesterday, it dawned on me that I had never, ever, in my life, cooked up some pot brownies. 
I don't know what I've been waiting for?!
 The marinol is inconsistent. 
The cezamet is expensive and does not give me the giggles. 
I call foul. 
These pharma companies are giving me the swag of medical marijauna.
It's time to cook up some good times.
But even then, I think I'm still getting the raw end.
I just saw my fist episode of Weeds and it introduced me to "Pot Heaven" over in CA.
You get to pick your side effects.
You can get your weed in lollipops.
I want adult lollipops!
I think MA just made medical marijauna legal, and it's definitely time to make an appointment with my experts in Boston.


 It's 5 days post chemo and I still want to curl up and sleep all morning.
 I was hoping my new meds would give some relief.
 I just started synthroid.
 My B12 shot came without a syringe. 
I'm leaning towards cutting treatment down to once a month in hopes of getting some energy.