Questions

I recovered in leaps and bounds this past week.
I'm a little confused.
I'm hoping I really have an adrenal insufficiency and it's not one of the cases where the cause is unknown so I'm getting prednisone.
What I do know is that my cough is subsiding. My nausea started to decline in 24 hours after the start of steroids and I was able to eat something other than bread and rice.
I had my first full meal in 5 weeks Weds. night and it was delicious!
Thanks mom for the meat pies.
I'm getting a PET scan on Monday to see if my cancer has spread.
I don't think it has, but not for any good reason.
I don't think it's grown because I don't think I've had the bone marrow function to support tumor growth.
Every hospital admission I've had bone marrow failure: Extreme bone marrow failure with an Absolute Neutrophil Count of 120.
That's no immune system with no real explanation.
Luckily neupogen brings it back.
That would put me in a bit of a predicament.
I've worked so hard to beat the cells of the bone marrow back to keep them from making tumors that it could no longer work at all.
And I'm not sure how serious it is, but I do know that I've been discharged on Hospice, not just visiting nurse.
I'm on hospice.
And a week ago it was fitting.
This week I feel like I could keep living for years taking one step at a time.
I just want to know that I am getting all the facts, that I have a clear picture of my disease, and the treatment goals, which is to survive pushing the cancer back.
The idea is not to die yet even though my disease is relentless and we're preparing.
But what questions do you ask?
Should I hit Doc with, "Hey, am I really dying now? Is it finally time? How much time do you think I really have?"
His guess is as good as mine.
What I want to know is that I'm still being treated in a manner that supports my goal of long term survival
Maybe, I should take a holiday from treatment.
Maybe, I should switch agents.
Maybe, I should just keep doing what I'm doing with steroids.
I'll see on Monday.
Along that note, if there is ever a question of whether or not I may survive and anybody wants to see me, to talk, to clarify anything, or anything that may make them feel more comfortable, please contact me or my family.
It's important to me that everyone understands what is happening and feels as comfortable as possible.

Thanksgiving Thanks from Dad

Hi All

I hope everyone had a great Thanksgiving. We have been asking for a lot of prayers for almost 5 years now. I was afraid we had used them all up. Hillary got out of the hospital last Sunday. She is on a whole new regiment of medications. She hasn't had chemo in about 5 weeks.  She and all of us had a very nice day here at Home. 

I can't Thank everyone enough for helping us get through another scare. A week ago I thought the worse. I am thankful I was wrong. Hard to believe I made another mistake judging Hillary's Health!! I am thankful we live near one of the best Hospitals in the country. I am thankful for having so many people who care.

Happy thanksgivingLove
Vic, Nancy, Pat & Grace, Heather & Allen, Pierce, Preston, Jon, Xander and especially Hillary

Living Well

You know it's been too long when I have to log in to blogger.
Luckily, I've been MIA due to the holidays and the over scheduling that comes with anybody with a large family.
And. . .. .
I've been doing well.
I can hang, a little bit, until about 9pm.
I know, whoa now.
I did skip out on black Friday shopping.
The deals weren't that wonderful and I didn't want to cope with the atmosphere.
What made it hard was a whole group of my favorite loved ones went together: Heather, Jon, Allen, Danielle, and Brynn braved it.
Jon had never had the experience so it was his turn.
Today I'm finally taking it slow. I will get sick keeping this pace.
X woke up Weds. and ran to Nana's house like his life depended on it thinking my sister's fam was there.
They'd been postponed by a nasty virus so we took him to get made up.
He had an appointment to get sealants on his teeth anyway so he got a haircut too.
He likes a little man make-over for the holidays.
I was running the whole day with family and the following am it started at 7:30am with a call The Wellington's were headed to Memere's (The StPierre side).
I did actually drag myself out of bed to see Dad's side of the family at my pace.
X woke up with excited chatter about how he loved memere and wish she could live to 1000. Then he moved on to his love of chickens and what he could do if he could just pick out one egg.
He did, literally, just grab one laid egg from the chicken and spent the majority of the am playing in the hay barn before moving back to my parent's for dinner, then on to see Jon's parents, and then back for more people.
Every time I thought he was going to get overwhelmed and have a break down, he'd take a little pause, like watch tv with his head phones on or in another room, then he'd be off and running again.
He ended up tagging along with Dad and Uncle Allen to catch Harry Potter Thurs. night.
FYI- If you're questioning taking your child, X says there are some very scary parts.
Yesterday was a little more of the same with Christmas decorating and cookie making thrown in before catching Santa and the Mrs. coming to town before our yearly celebratory pizza party.
And finally, today I'm chillin'.
I woke up with X and we played video games until he left with Jon so I could rest the whole day until I go out with some girlfriends from high school!
And that's the non-health update of activities. Yes, I'm living well. Thanks for the thoughts and prayers.

Desperately Needing

I desperately needed prednisone.

 Yesterday, for the first time in 6 weeks, I was hungry!

I ate a meal! 

Again I'm rediscovering the joys of living: Smiling, breathing, walking, and eating.

I even started cleaning and picked up my art.

 I'm finishing my jewelry and framing out photographs. 

I feel renewed thanks to the diagnosis of Addison's disease or adrenal insufficiency.

It turns out all those steroids I was taking just took over the job my body was naturally supposed to be doing.

I'm happy for the relief.

X is a little more skeptical. 

He prayed for a cure last Christmas. 

What he got was steroids. 

He felt bamboozled. He felt scammed by God and Santa, and like any clever child, knew that the two required instructions more specific than, "make my mom better."

For a while, he was asking/praying for me to be fixed with out medications. 

Now, he's refusing to pray and has resigned that I'll die. 

It's heart breaking. It is the most heart breaking aspect of my disease: the knowledge that the cancer is causing my loved ones the greatest fear and pain they'll ever experience.

At least, I could see his basketball practice last night. 

Maybe I'll get to coach a little. 

He is such a talent, and I can only pray that I can see him turn into the gentleman I know he'll be. 

That's one of the most important things in my life. That's my largest goal right now. 

From Vic

Hi All
Hillary is back at home from the hospital today. She has a new plan to try. She is going back on steroids. She is having Palliative care come to her home to do more home treatments. More IV at home. Different meds.

Hillary has not been able to hold down much so her medicines were not working correctly. She has taken some of the meds that she had back when she had her stem cell transplants. She has not been able to do the chemo at all but the cancer seems to be holding steady. No Growth or reduction. Her biggest difficulty is catching her breathe. The steroids should help this. 

So for now we hope for a relaxing Thanksgiving Week. She is making plans to go shopping on Black Friday! A little retail therapy has always worked in the past!

Thanks for all the prayers and Kind thoughts. This has been a tough week and glad we had all the support. 
Happy Thanksgiving,  Happier shopping for you die hard Bargain Hunters.


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

It's the Holidays!

Awwww, thanks Val. I needed hope for the holidays, the same way I needed it last year. 

I'm ok with any possibilities but I'm heart broken about maybe leaving my family alone.

Your gift came at the right time. 

I was in tears with the realization that my lifelong friend had her first child the day I accepted vna/ hospice services in hopes I can just have more quality time left with my fam. 

That hurts. 

I shouldn't have to make these decisions. 

I should be deciding on baby names and nursery decor.

I'm not accepting straight hospice. I don't qualify as having less than a year to live. It's a combination so I don't have to run to the hospital so often for fluids or pain medications.

Since I am a nurse, I have a little more capacity to administer my own medications. 

 Luckily, I may have a chance to regain my stamina. 

I've been diagnosed with addison's disease or adrenal insufficiency. 

I'll be taking 20 mg of prednisone, again, to replace what my body is no longer making. 

With VNA, I can give myself shots and some ivs. This will give me more autonomny.

 I won't constantly be calling the hospital and being transferred from unit to unit to get orders.

I may start taking neupogen or neulesta to stimulate my bone marrow growth every two weeks, but that's up to Dr. G.

When I was admitted with a fever my Absolute Neutrophil Count was 160. The next day was 120. 

500 is considered okay.

1000 they'd let me out of the hospital. 

At least I'm home for the holidays and plan to stay that way. I'm gaining energy and I've stopped the constant vomiting. I've even started making Christmas gifts for my friends. We'll see how that goes.

In With The Clinic

I just signed on for hospice.
It went better than I imagined.
I pictured tears and tight hand holding while trying not to look into each other's eyes.

Thankfully, this isn't what hapened. We are at one of the best, widely acclaimed center for care management led by celebrity Doctor Ira Byock.

He renowned for pioneering a new outlook towards death, slowly chipping away at fear and sterotypes while do it.
Here is an excerp from one of his publication, "The Four Things That Matter Most:"

Please forgive me," "I forgive you," "Thank you," and "I love you."

The Four Things are everyday guides for doing the right thing, for reconciling the rifts that divide people, and for cutting through old history—because you just never know.

Powerful real-life stories culled from Dr. Byock’s and other counselors’ patients who used the Four Things in all sorts of life situations show the possibility of interpersonal healing and wholeness, even in the wake of tragedy or the face of death. From a granddaughter’s last days with her ailing grandmother to a teenage girl’s first hour with her estranged father, these stories are “Every Day with Morrie”, enabling readers to imagine how they can use the Four Things in their own lives.

These eleven words can improve all relationships—at any time. Using the Four Things, Dr. Byock also reclaims the traditional meaning of “good-bye” as “God be with you”—a blessing that we all can use, whether parting from someone for an hour, a day, or at the end of a lifetime.

 

Now, Pick up your jaws.
Just like I thought this morning, hospice does not require a "dead by" date. I thought it was a year of living left.

No. It's not, nothing like that.

What we're working out is an individualized program where I can control mt pain at home. My last three visits have been for pain related issues alongside some other ailment.

They now think I have addison's. I'm getting the ACTH Stimulataion Test tomorrow.

It's ordered to assess the functioning of the adrenal glands stress response by measuring the adrenal response to adrenocorticotropic hormone (ACTH).[1][2] ACTH is a hormone produced in the pituitary gland that stimulates the adrenal glands to release cortisol.[2]

Thank you wikipedia.

THIS DOES NOT MEAN I CAN NOT RECEIVE TEATMENT.  I'll contine running to the doctor for huge issues like my lungs. I just hopefully won't be running  to the hospital for things like pain management.

I was alway curious about working in palliative care, mostly becaue their charge was the largest on my bill, but it's a unique subsect of nursing. Nothing quite parallels it.


It also calls to vie a unique set of symptoms the some nurses in other speciailties may not realize. Yes, there are symptoms of dying. Here they are if you want to look: http://www.amitabhahospice.org/public/helpful_info/signs_of_dying.php
These guys don't give a timeline which would be helpful. I don't think I have less than weeks. I am experiencing many of the signs, but these can also be due to other pathologies. We'll see about that.

But I'm happy that now I'll be able to spend more comfortable time with my family while I try to save up the money to see a Dr. Ralph Moss in Boston. Dr. Moss is a lymphatic specialist that studies through out the world. Unfortunately, it's $800 to see him. He want me to buy his Lymphoma bok for $300 (essentially a testbook) before we can talk.

I do like his Moss Report's though. These you can sign up and receive for free about new innovative treatments that have suceeded in Europe. Many anti-cancer medications have been tried and proven safe in Europe: such as individualized vaccines vs. diseases and hyperthremia.

Hope everybody has a happy holiday. Smooches. 

I have taxes and Christmas coming up. You're all getting crafty presents.



I'm Snuckered

I came to the hospital hoping to get my nasea unde control.
Once some IV ativan, morphine, and antiobiotics were in my system, I felt like a new woman. . . . .almost.
The ER is not going to let a nuetrpenic cancer patient with a fever walk out the door.
If they do, they're stupid, Find yourself a new hospital but that's never done something so crrazy before.
Speaing of crazy, I'm' snuckered
I can barely write a sentence I was hoping for a discharge today, but my ANC fell, AGAIN, despite a neupogin shot from 120-110.
500 is relatively safe. I could go home and be a hernmit.
Thousand is the alpha number where I get my life back.
We've been tinkering with my meds since I've been so sick.
This wasn't the plan.This wasn't supposed to happen. I was supposed to take a sabbatical using chemo with very little side effects.
But I'm sure you can believe, knowing who I am, that I am not have LITTLE side effects.
I've had a cough for five weeks that I don't even notice anymore. While X is at sleep, I'm most likely to sleep all day, waking up to an alarm to pick him up.
Dr. G thought this could be adrenaline insufiency (Addison's Disease), and now that I recheck the symptoms according to the MAyo Clinic:
Addison's disease symptoms usually develop slowly, often over several months, and may include:
Muscle weakness and fatigue
Weight loss and decreased appetite
Darkening of your skin (hyperpigmentation)
Low blood pressure, even fainting
Salt craving
Low blood sugar (hypoglycemia)
Nausea, diarrhea or vomiting
Muscle or joint pains
Irritability
Depression
That sounds like me! I've upped my prednisone to 5 mg and had blood drawn for a cortisol tests.
IF the test is positive I take 20mg of prednisone again. I think at that dose
I could have the effect without the severe side effects.
I'd love more energy, but everytime I take my adderal/marinol/or cesamet daily I end up sick. I forget I'm ill. I feel geat, and get in the flow,  until I stop taking them. Then side effects someback, sometimes with new ones that I couldn't feel because of the meds masking it.
I'm getting sleepy so I'm signing off now.

late update

Tuesday-- I'm at the hospital. I made it here while constantly having hot flashes and under the threat of vomiting. I lost my breath annd wet my pants while getting x to school and said fuck it. I did it anyway. Dr. G and I agree this wasn't the control we wanted. Luckily the disease hasn't progressed. I'm going back to 5mg of prednisone hoping it will help. If I have adrenal problems the prednisone goes back up to 20. I don't care as long as I can again get x to school without it exhausting me and bring him home while i have energy. I missed his first practice as a big 2 grader. He has games this year and I can't wait. I enjoy my life, but I miSs me. I miss the smile, the jokes. Too much has been taken and it needs to stop. Hopefully my magic pill will come though soon. Say lots of prayers.

update from dad

On 11/17/2010 10:48 PM, Victor St. Pierre wrote: Hi Too AllThanksgiving is right around the corner. My favorite Holiday as  can just be thankful for all we have. Good food, good friends and hopefully good health.  I am truly blessed as I am still able to play soccer at the ripe old age of 53. I turn 1 year older on Saturday. Well this is a Hillary update so enough about my staying young thoughts. Hillary has not had the energy to post anything on her Blog so I thought I would send out an update. Since Hillary got out of the hospital last Monday( I think) she has not been able to do much. She had a Cat scan this Monday. The results determined that the cancer has not grown. Yea!  The results also shows that the cancer has not shrunk either. The main spot is next to the heart.  Damn!  She was too sick to do chemo on Tuesday. We really don't know if it is working or not. Maintaining status quo would be ok if the rest of her body would agree. Her regiments of steroids, pharisees, morphine, chemo, anti nausea drugs, pain control, some thing to make her eat, sleep and poop are all taking a toll on the rest of her body. The worse is the damage it does to her mind. The chemo brain makes it hard to remember. Hodgekins Lymphoma has a 90% cure rate. The rest of the 10% must be killed by the treatment. Better living through chemistry is not working.Hillary was admitted to Dartmouth again tonight. Same reasons as last week. They never found out what the cause of the fever was. She was giving large doses of anti biotic until she felt better. Probably the same treatment this week. She has not been able to recover enough between bouts to really put up the best fight. We really just don't know anything. Our Doctors are good but they have run out of things to try. There is not a manual to follow with Hillary. She is writing her own script.         She has always been special.I am listening to her blog music as I am writing this. The song now I'm a winner. She still has the attitude. The sports competitive attitude can get you a long way in life and it has. I just hope that the right team combination along with great coaching and great fans can get at least a tie. Enough of the sports analogies. I wish I knew what the next step is but we just will play it as it comes. (song Now is Live like your dying by The script)This is all that Hillary has posted on her Blog this week "Dear God, I pray that You will guide someone to find a cure for cancer.Amen "  I hope the prayers are answered soonLoveVic, Nancy, Pat & Grace, Heather & Allen, Pierce, Preston, Jon, Xander and especially Hillar

Dear God, I pray that You will guide someone to find a cure for cancer.Amen 

Thank you

Thank you Everyone who has prayed for me over the past weekend and throughout my illness. I'm coming around to feeling better

I woke up from my nap yesterday and suddenly rejoined the world. 

I realized I was missing my lovenox, zithromax, and lexapro from my med arsenal.

 I realized I was due for more chemo on tues but I think I'm having "b symptoms" from increasing disease. These are hot flashes, night sweats, low grade fevers and increasing lower back pain. 

A quick call to Anna bought me a CT for mon. before a big school meeting about x. 

We know his ears are working but he struggles with reading, letter formation and spacial reasoning. 

He's also emotional and has trouble coping. Luckily he has a new therapist that is even going to call in. One that he loves and insurance covers. I'll let you know who and where she is if you email me personally.

He meets his speech goals during therapy but doesn't translate the lesson to real life.

He's great at math. He likes it so much he is requesting harder work to increase his self esteem. 

During the summer when he was 6 he would do math for fun, whenever he felt bad, to feel better. 

A quick call to the pharmacy has verified I've still lost my mind since my meds I'm missing were filled 10/28, which feels like ions ago, but is more like a week. 

They could be anywhere. 

I've also woken up to a hike in the retirement age but no riots (ala France) and an extention of tax cuts for the rich (sorry guys) in exchange for cuts in social security and medicare. 

On the sign, an old woman says “When I was your age, I was already working” and a girl replies “When I am your age I’ll still be working.”

Hospitals, you're also waking up to even lower reimbursements. 

Congratulations all you who voted, here is compromise. 

It has now been verified I'm still too sick and too broke to vote republican. 

Last night I also saw George H. Say he spent lots of time during his presidency studying history but some how missed the 101 lesson that war ALWAYS hyperinflates the economy artificially and eventually plunges the economy into a stale mate.

This has happened to every economy since WWI. Didn't we all learn a lesson from Germany? Or could that not happen to us?

Thankfully, with my five or so years left, I'm not worried for me. Just sucks to be you.

I'm going to find my meds. 

I jumped the big house yesterday (monday) because I was feeling "better." But better isn't well. I got x up and dressed and sent him to school but not before throwing up something unidentifiable since its been so long since I ate. I've eaten cucumbers, bread, and water. And I thought I'd have trouble losing the steroid weight. I think I'm at 142 lbs. My goal is 135lbs. That gives me a bmi of 22, the weight at which optimal healing occurs. I even went up and down stairs without losing my breath. But I'm still nauseaus and uncomfortable. 

THANK YOU JEF!
How much fun! To think the Tiger's actually wanted to play with me.
My loving, humorous husband and brother in law had me convinced that the tiger could smell the weak and was following me for its mid-day snack.
I swear if the fence was lower or if there was a hole I could be put through, my man would have thrown me right into the den to see what would hapen.
AND HA! He liked me because I'm awesome, not a useless cripple that's ready to die.

Talking nonsense

I'm back in the hospital doing fine.

I was admitted friday after hearing the election news, no Paul Hodes :(.
I just couldn't take it........

 Or I may have spiked a fever (101.5) and got to the ER muttering inconherant jibberish from septicemia.

 I'm pretty sure that's what actually got me admitted and not Hodes' defeat.

I have an infection that made me go septic. I'd been having hot flashes and cold chills all with sweats and goosebumps all week.

I'd been throwing up off and on.

I kept muttering and saying incoherent sentences that made perfect sense to me since they were cross over sentences from my dreams. And I did that for a couple days. I had trouble differentiating between my dream and reality.

 I asked my mom where Carter's locker was even though carter is too young for a locker. On an other occasion I've held a doc's hjand, looked deep into his eyes and told him I was glad he had a parking spot. This was only a few min. After I saw my 86yo memere climbing the walls.

Whooops. That's serious.

But now, today, I'm good. I'm sitting up. I'm eating. I may be getting out tomorrow,

Yes, there is an ap fof that

One Vermont Hospital is only days away from turning to technology to ease the burden of emergency department overcrowding.

Few hospitals have all ready started to get creative with informing possible patient about wait time.

One has a bill board that is updated every five min.

Another has a text messaging system that sends you the wait time. This system has received 10,000 texts in the past months.

Now, please, take a second and imagine the scrambling nurses/ secretaries/ doctors, etc trying to answer those phone calls.

 I used to grumble under my breath that if they "needed to call and ask it wasn't an emergency." Now, thankfully, that time is freed up by technolohy.

Thank goodness. Wish this could be done everywhere.

Hi To All From Vic

Last weekend Hillary, Heather, Jon, Allen, Xander, Pierce and Preston all went to the Franklin Park Zoo in Boston. At the Tiger exhibit a white tiger came towards Hillary immediately and starred at her. Hillary was in her wheelchair and she thought it was odd. They moved to the other end and the tiger followed. She raised her hand to waive at the tiger and the tiger raised it's paw. I can't make this stuff up! So they went along to see the rest of the zoo. They decided to go back to see the tigers and the same tiger came running back to see her!! This is very odd and must be an omen. The white tiger even roared at the other orange tiger.

We have thought of a few reasons that this happened

The tiger wants her to stay fierce and aggressive and continue to fight. Be the tiger queen instead of the Lion King. show her courage to all of us.

The tiger represents her attitude when she decides to do something, nothing will get in her way.

The tiger is a reincarnated friend that just wanted to say hi.

The tiger was hungry and was looking for someone who couldn't run fast!



I'm sure their are a lot more reasons that can be developed from this omen. This is just another impact that Hillary has on the world.



Hillary is not doing well. She Had Chemo on Monday, her last scheduled pharisees on Wednesday. Pharisees has been helping her lungs heel. Now she can get the tubes out of and off her chest. Yesterday she went to get IV fluids. This morning she is being admitted to Dartmouth again with a fever. It looks like it could be a septic infection. She has been getting weaker for a while now. She is in a lot of pain. Last night she asked that we set up a meeting to pick out her cemetery plot. She knows her body well. She was feeling pretty High last night as the Medical Marijuana really was working well. Out of all the medication she takes, that seems to be the one that has the best affect. I have changed my opinion and think it should be legalized just like alcohol. Lets hope she is wrong about this one or just planning for the long term future.

She has certainly surprised all of us and herself many times before. She has got to meet her German bone marrow Donor Ankh. We have too many Omens and dreams to fulfill.



Check out Hillary's Blog http://www.baldiesblog.blogspot.com/

Please keep Hillary in your thoughts and prayers. Thanks for your support.



Love

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