Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Friday, October 29, 2010


I'm here finally making my plug to the American Voters reading this.


Please remember the laws created by Obama-Pelosi's Health Reform will save MY life, as well as the lives of others.

Voting for representatives that support repealing the bill support putting my life, and others, in jeopardy.

I no longer need to fear reaching my spending limit and dying due to an inability to afford care.

I can join a new program if my current insurance company decides to raise the rates due to my illness.

If something were to happen to my husband, I now have a low cost insurance option to join.

Now, I'm going to impose my personal political views onto you:


HE was integral in passing Michelle's Law (ensuring that dependent college students who take a medically necessary leave can keep their health insurance) as a Congressman under the Bush Administration.

He has called me personally to discuss the need for reform for the people. He has read my posts!

Paul Hodes absolutely listens to the voters and will represent us well.

In case you couldn't hear the candidates views over the mudslinging, to do a side by side comparison of the NH candidates, go to:

Thursday, October 28, 2010

Join Gail O'Brien to Get Out the Vote!

In March, Gail O'Brien, a teacher in Keene, was diagnosed with Non-Hodgkins Lymphoma.  Without health insurance, she faced a challenge in getting the treatment she needed to recover. 
While attending a Working Families Win workshop in May, Gail learned about the new Pre-existing Health Insurance Plan that was created by the March passage of the new health care reform law.
Gail became the first person in New Hampshire, and one of the first nationally, to sign up for the new affordable plan.  She is now able to get the treatment she needs to recover and continue her great work in our community and state.
Both Charlie Bass, US Congressional Candidate, and Kelly Ayotte, US Senate Candidate, are vowing to repeal the new health care reform law, if they win.
We can continue to make sure people in our state and country have access to life-saving care by getting out the vote for candidates that want to expand access to quality, affordable health care for all.  Ann Kuster and Paul Hodes have committed to continue to expand access to quality, affordable health care.
Join Gail O'Brien and Working Families Win NH for our final Get Out the Vote Push!  We will be making calls and going door to door in the final 4 days!
Volunteer Times and Dates:
  • Saturday, October 30th- 9am-9pm:  Join us for a great day of voter inspiration and outreach!  
  • Sunday, October 31st- 9am-9pm:Come in your favorite Halloween Costume!
  • Monday, November 1st- 9am-9pm:Join Gail O'Brien from 5pm-8pm to get out the vote!
  • Tuesday, November 2nd- 9am-till Polls close at 7pm: Election Day!  Outreach until the polls close! 

To sign up: 603-504-2906 or

Re-Occuring Dream

I have a recurring dream. 

Its been going on for months now. 
Same story. Different place. Different people. 

I always start in some cool place: a city's hottest street, my dorm full of friends, a soccer tournament, a nightclub/hotel.

 You get it. 

Then, of course, good things can't last forever. 

But I can't leave. 

I'm stuck. 

I can't navigate the system out. 
I don't get the airport. 
The subways too tough. 
I can't get picked up. 
I'm too directionally challenged to drive home. 

Its always something, like being on a cruise but trying to escape by boat. 

That was another one. 
Coconut Dreams

Who wants to interprate this one? Its driving me crazy.

The Shopper

My Woman Of The Month Press Release came out in The Shopper, which is distributed throughout Cheshire & Sullivan County, today!

I hope everyone who would like to can get a copy. Ours comes in the mail later this week.

The photographs from the photo shoot have come out also.

You can see them at

These were taken by KC Bruce Photography who not only are professionals, but very fun to work with.

Wednesday, October 27, 2010


My house was clean and orderly. 
The cuppards were full.
 I'd made some staple survival foods. 
I cut up cucumbers and watermelons. 
I had guacamole on hand. Did you know that its one of the few foods that contain all the nutrients to sustain life? 
Day care. Rides. All organized. 
Yup, my pre chemo routine was done. 
I was in good shape. 
Then I get into my appt with Marc and Anna only to be told my, "ANC is 700.". 
Now to those of you who speak english, that means I have nooooo real immune system.
 If the number was 500 I think I would have been stuck in the hospital without a single symptom. 
I was 900 friday. So we know that my immune system went down over the weekend FOR NO REASON AT ALL!! 
...Maybe, it was taking a vacation? 
When both Marc MD and Anna NP showed up together, I got excited thinking they both wanted to hang out, but no, now I wonder if they were both delivering bad news.
 They do gang up on me to deliver bad bad new. 
Spontaneous bone marrow failure is pretty scary. 
So no chemo for me. This happened during my hospitalization for my PEs. 
I was given a med then by the resident that increased my ANC from 200 into the safety zone over 1000 over night. 
I'll take more of that please. It's reassuring that this med exists. I need to remember the name. 
But even if the medication is life saving doesn't guarantee that I'll be able to receive it.
All I wanted was equal quality and accessible health care for all, but even when Americans had to make no change if they didn't want to and were offered the congressional health plan, people still screamed about rationing and the possibility of even larger soaring health care costs.
What did we get? 
Well, with the little reform that made it through, inflation has all ready eased. Insurance still cost 14% more than last year and americans still have no recourse but to pay the rising costs, but that's better than the 28% last year.
And we are starting to ration.
Yes, check it out, with nothing other than cancer rugs, of course.
Check out MSN's reporting that 150 medications are in short supply.

"Worse, the drugs that are in short supply are often the ones needed most. This year has seen shortages of common drugs used for basic treatments: morphine for pain relief, propofol for sedation, Bactrim injections for infections."
Two of the above medications I take daily. The third I like to have when I go to the hospital screaming in pain. And this isn't the first time I was directly affected by a shortage. 
I had to change my anti-viral medication due to a shortage. I couldn't receive oxycodone for a period of time last year due to a shortage causing me to change to morphine, which is now having a shortage.
Of course, drug companies are stopping the development of these medications because they are affordable to the patient and do not generate enough profit for their companies.
I guess it's time to legalize marijuana for us so we don't have to deal with these problems.
And please pray I don't turn out like the two patients who have all ready died due to medication shortages or the cancer patient who can no longer receive his chemo. 

From Vic

Hi To All

As always I like to start with the good stuff. I can't say it any better than Hillary does on her Blog so I have added it to the letter. Patrick and Grace's wedding was beautiful. They are on their Honeymoon this week. My mom turns 86 today. She is remarkable. Xanders soccer team went undefeated in all their rec games. We did get smoked when we played 2 under 10 travel club teams. Pierce turned 1 year old.

Hillary is holding her own. She was scheduled for chemo on Monday but could not do it because her blood counts were low. She had a PET scan last week. She still has a spot of cancer. I have to admit I really don't know how to take it. Hillary was very sick and did not have chemo for 5 weeks. It did not shrink but it not grow. The type of chemo is still working and the cancer has not mutated. Everything is kind of neutral. She is having a lot of trouble breathing with activity or cold. Her last pharisees is next wednesday. Then she can finally get the tubes sticking out of her chest removed. All in all we are living life as it is. Try to keep some excitement going and do what you can.

Tuesday, October 26, 2010

Ankh & Onke

The Ankh  is a looped Tau Cross and an old Egyptian hieroglyph meaning life

For many civilizations using this symbol, the loop represented the sun and it was held by many gods including Atum, the sun-god of Heliopolis. The loop is also a perfect symbol that has neither beginning nor end, so it represents the eternal soul.

The entire symbol is also a key, to unlock hidden mysteries in the Kingdom of the Dead and was often used in funeral rites. The symbol also represents the Tree of Life, with its trunk and foliage.
Even more interestingly is the belief that the ankh is the Egyptian sign of life and indicates that the King or God holding it has the power to give life or take it away from lesser mortals.
Anke, pronounced the same, is my 28 year old GERMAN bone marrow donor!!
And apparently, the woman who had the power to give or take away my life.
How cool?! I was just able to learn her identity today, because I didn't send my paperwork work earlier.
My bad.
Even more oddly is I've been having the urge to draw this symbol recently.  Not for any reason at all other than I like the looks and symbolism.
I remember doodling these alot in junior high. Heather had a long necklace with a huge Ankh during the same time.
It was the same time I got mono and started to get TIRED.
Interesting how these things happen. I don't think it's all coincidence.
I'll have to start on my letter.

Monday, October 25, 2010

"Strength, sometimes, is listening to the small defeated voice in your head saying, "I will try again tomorrow.'"

About a month ago, I reached a crossroads in my health, in my treatment, and in my life.
I was weak.
I was short of breath.
I could barely do anything.
I was afraid of doing small errands like getting gas or running to the grocery store.
I was feeling sick.
I was constantly taking a wheelchair. I'd get short of breath and suck on oxygen.
I was at a fork in the road and I took it!
I went to see my pulmonologist.
Who kept scolding me, telling me I needed to get off the oxygen and it needed to be now.
I didn't even have my tank with me.
There was a tank attached to the chair I hopped in at the hospital.
But you would have thought I brought my crack pipe in and asked him if I was cleared to smoke it the way he kept referring to the oxygen.
Then he took me out with an oximiter to monitor my blood oxygen while I walked and surprisingly, even when I feel severely short of breath, my O2 saturation was only low 90s.
I only dropped below 90 after going up and down a flight of stairs.
Not so bad. A little relieving.
After I went back to the room and sat down, Dr. Weinhouse went into n excited talk about how excercise would improve my quality of life. He was waving his hands and talking excitedly.
So I ditched the wheelchair before I saw Dr. Alyea and he just couldn't stop gushing about how great I look and fabulous my lungs sounded and his advice was "Keep up what your doing!"
But I'd ditched my wheelchair in anticipation of the lecture, and my mom wasn't with me to bring it back.
I decided I still wanted a wheelchair so I called up Dr. Gautier to get one ordered, you know, for big trips, like the mall, airport, etc. He didn't say no, but I could see his face fall through the phone. I don't even remember what he said. I just remembered he wasn't excited and I ended up reneging my request.
And That's the thing, neither doctor told me exactly what to do. I was at a crossroads. They could suggest.  It was their emotional reactions to what I was saying that told me so clearly the direction I could head in.
I wasn't really failing. My numbers looked good, but I felt like I was.
Sometimes, the evidence is not in the symptoms or the blood work.
Sometimes, it's a feeling or a hunch or a message read between the lines.


I said early after my very first relapse that, maybe, God was using me, that I'd have to suffer horribly until my treatment options ran out and only then could I be cured. 

Because only then could all the prayers be answered. Then people would know I was absolutely a miracle from God and faith could be restored to many.

 At the time, I didn't realize how many treatment options for hodgkins were out there. 

Now, as I get closer to the point where treatments have failed, I'm not afraid as I was once. 

I have faith that if this is my purpose, that this has a purpose, and it will be done.

Friday, October 22, 2010

C'est le vie

I've been a big slacker on a week I have big news.
I've just had a lot go on this week.
And I've been tired.
Sometimes I wonder if I'm just lazy or exhausted.
Chemo related fatigue is a very real thing.
X has also been having a rough time so he has needed some special TLC.
And those TLC days are a little exhausting, so the next day I would need to sleep.
I've also tapered my prednisone, finally, yet again, to  1.5mg.
I was supposed to be off this stuff in June according to my pulmonologist.
I just haven't been healthy enough to keep weaning.
I have been so tired mom sent me to the hospital to get a CBC to see if I needed a transfusion.
Thankfully, I didn't.
I wish I did though.
I always feel better with fresh blood.
Now I'm stuck being tired.
But enough of that.
Drumroll . . . .  .
Okay you have all waited long enough.
My PET scan was okay.
I didn't technically progress.
So my disease hasn't progressed.
I have a new area of hypermetabolic activity that could represent new active disease, but since that spot hasn't grown, my disease has not progressed.
We're thinking (because I need to listen to what my doctor says) that it's not actual resistance to the velbam I'm taking.
It's flash (my lymphoma) coming back because I had to take five weeks off of therapy.
So that's the news. C'est Le Vie.

Thursday, October 21, 2010

Fall In New England

Hi All

Sometime when I need to really relax I go the top of the hill- Calavant Hill In North Charlestown. Take a deep breathe and say-- What a wonderful life. I think about all my good friends. How special it is to live in this surrounding.

Then I come back to work and Reality and send pictures to my friends instead of designing a septic system.

We are having a good week. Hillary is 2 years since her transplant. She can find out now who the donor was. I am still betting on a French girl her same age.  Any guesses?  We will let you know when we know. We can enjoy the foliage. Hope you do too

Lots of love

Sunday, October 17, 2010

And You thought I was kidding. . .

Two out of every three people believe more should have been done to improve health care access. I bet this woman is one of them.


A pharmacist refused to give an asthma inhaler to a New Jersey woman who was suffering a major attack in the store, because she only had a $20 note - and the inhaler was $21.50. 
Katherine O'Connor had left her inhaler at home and was near the local CVS pharmacy with her boyfriend when she began to suffer a major attack. 
Boyfriend Jack Brown said they rushed into the store and tried to find the pharmacist while Miss O'Connor was still having the attack.

But the pharmacist refused to hand over the inhaler, which would have easily put an end to Miss O'Connor's suffering, because the couple was short one dollar and change. 
Mr Brown said: 'I had exactly a $20 bill. It came to $21 and some change. I offered him [the pharmacist] my cell phone, my wallet. I said I live right around the corner. I come in here all the time. 
'I said "Can you just give her the pump. She's on the floor wheezing'. I didn't know if an ambulance would get here on time. He said there was nothing he could do for me.'

Miss O'Connor added: 'He said "Well, there's nothing I can do" and I was just blown away.' 
She said she had little medical insureance to speak of, and having to call 911 would have cost her about $1,500 for an ambulance. 
The couple eventually left the pharmacy without the inhaler - even though Miss O'Connor was still having an asthma attack.

Mr Brown remembered that he had a friend who is a paramedic, who came just in time to give Miss O'Connor an inhaler. 
The manager of the CVS pharmacy declined to comment on the matter but a statement was later issued by the company's corporate offices that said: 'The well-being of our customers is our highest priority and we are looking into this matter.'

Read more:

Thursday, October 14, 2010

My mouth pain snuck up on me, insidiously.
Today I've only eaten cereal and ice cream.
I've also been testing lots of caphsason, because I hear that's what's up in mouth care.
If that doesn't work, I have my BLM. I have Healthy teeth natural dentist. I have more options than I can remember.
I finally dragged myself off the couch to join the waking world today.
Since Monday, I've managed to take care of X every morning (as usual), do homework, make meat loaf, and play some wall ball.
That's about it.
But I am not complaining, oh no I'm not because things are going my way.
My nurse, for some reason, forgot to change my dressing on Monday.
I also forget to ask him.
But as I'm cursing myself and cursing him on Tuesday and trying to scrounge the supplies together I realized my dressing went unnoticed because MR. Nurse was. . . .  . embarrassed.
Yes. He didn't want to pull my shirt and bra back to get a good look at my dressing because it could mean he was trying to take a peek at my peeks.
And that could mean one thing. . . .
I'm getting cute again!
He's forgiven.
Good thing since I have a photo shoot Sat. for being Monadnock's Woman of the Month. I'm going to ham it up.
I just have to make it through a quick PET scan tomorrow (let's pray that my cancer has stayed away),  and then, maybe, more chemo Monday.

Wednesday, October 13, 2010

Thank you Luvlies

Thank you for the responses.

I'm well aware of both Bekah's and Colette's opinions of where I should be treated.
Bekah says I should meet with Dr. O'Connor, a research and trial drug guru of Columbia, I think.
Colette Votes for Dr. Ursula Jacob of The Klinik Im Alpenpak in Germany, but does come to NYC time to time. Since she's gotten so frustrated with me for not taking this route either, she's recommended Dr. Ralph Moss and Dr. Rodriguez, both of NYC, of course
I would be interested, possibly, at some point, in meeting these people.
I'm closest to getting a consult with Dr. Ralph Moss for the discount price of $800-1200.
But silly, silly me. I'm happy with my team. I think between Gautier, Alyea, Weinhouse, and I, with consultation when needed, can be just as successful as the vogue Doctor's of NYC.
In fact, I say its on that we can keep me alive just as long as anybody else.
I'm feeling relatively confident.

But if my PET scan Friday comes back with more active growth, I will finally make that appointment with Moss.

But believe it or not, the woman I am seeking is not Adrienne. I did get ahold of her family. Ironically, I thought of her on Oct. 11th, exactly a year after her death. No coincidence there.

The woman I am looking for is older, possibly young 40s. I don't think we'll find her on the blogosphere. She was diagnosed 19 years ago when she was a young mother. She's lived to see both her children graduate from high school and move on to college. She has long brown hair and is still able to stand straight and smile genuinely for a photo shoot.

She does not look like a woman who has been through the ringer, and I must find her, not only to review her records, but to understand her mindset and personality.

Tuesday, October 12, 2010

Chemo Day 1

And I am doing okay. I can't sleep like I want to. I'm trying to force myself since I'm picking up X at school. Luckily, at 7, if I'm having trouble functioning we're only alone for 45 minutes and he can care for himself.

We've altered our home so he can be completely independent in getting his own snacks, accessing his games or sports equipment, but I do know he has plans for this afternoon.

He thinks his momma is doing GOOOOOD. He went to school with no prob. HE wants to come home and do chores to make cash.
HE wants to fold clothes.
HE wants to clean my car.
This I think I can deal with. I may need a small nap later and then up again for homework/dinner/bedtime.

Even better, I'm motivated. I'm curious. I feel like I'm completing some projects with my best efforts, and now I'm moving on.

I KNOW there is a woman living in the United States who has had Hodgkin's Disease for Nineteen Years.

I read about her in a magazine on a day I was feeling self righteous, and did not steal the magazine.

I am a hopeless magazine lifter. I feel like it's my right in exchange for the wait, and I sometimes bring them back with my own collection.

But on that day I was going for Sainthood, and didn't.

I must find her. I'm also interested in another young woman who recently passed that survived nine years with Hogkin's.

I am fairly confident her parents would be willing to share her information for the long term betterment of treatment. It's a way their child can continue to give and that her death way not in vain.

Monday, October 11, 2010

Mean, nasty, brutal lungs

I hate what my lungs have done to me. 
They've completely altered my way of life. 
They've brought fear into each day and each movement. 
Everytime I leave the house I wonder if I'll be capable of grocery shopping/shopping/ getting meds etc. 
I'll never again have a hop in my step with stopping to catch my breath.
 I've only now started pushing myself. Telling myself that if I need something upstairs, I can get it if I go slowly.
I was told to start excercising.
 I started with kegel's so my bladder wouldn't fail me when my lungs tried to. Theoretically if I excercise I'll feel better, but I'm pretty sure kegel's wasn't all the pulmonologist meant. 
Actually. . .  I don't think he was thinking that exercise at all.  
HE couldn't tell me why to exercise, maybe it allows oxygen to be used more efficiently. 
I'll try this next. 
Now I'm determined to find a way to get my lungs working at a level I can accept.
My house is dusted.
My frothing hacking cough is gone.
The pain is controlled.
I have an air purifier.
I also invested in plants, natures' best air purifier. I'm hoping to keep all constant colds and viruses X gets under control. Maybe these will help alongside an improved diet for both him and I.
Luckily, he doesn't fight changes and I've all ways been a healthy eater.
Pray for my lungs to be restored to normal without the need of medications.
Xander figured out that loophole after he asked both God and Santa to cure me and they did. . . . temporarily. . . . with Prednisone.
I guess we have to be specific.

Sunday, October 10, 2010

This week has been another one for the books. 
Parenting solo when sick with a hacking cough and costochondritis only to get pheresis in the middle makes the job even more challenging. 
I think I put x to sleep twice, the other days he put me to sleep. 
I'm lucky I have great supportive loved ones who will take care of both x and I when J's away.
 Even luckier, I was able to find a new housekeeper. 
Unfortunately Becky was getting overwhelmed with family stuff. 
She's been so great to us for so long I didn't want to become a burden on her.I hope the tables have turned and I can now support her, if only to lend an ear. 
Our new woman is thorough and even dusted!! Dusting is not something any of us wanted to do.
 It could shut down my lungs.
 I can't even bend over. With a baseline bloodpressure of 90/50 on a good day, it is very real that I could lose consciosness or die over exerting myself.
 I finally prayed for the vicious cough to go away, and of course it did. I wonder why it took me three courses of antibiotics, pain and suffering before I tried this route.
Silly me. 
Now j is home just in time for my chemo monday. 
At least we were supposed to have a good weekend to enjoy each other.
Instead I got threatened to have my teeth knocked in
Thank goodness for good girlfriends who are always there to lend an ear and a beer. I didn't even have to drop the $15 I thought I would at Harpoon's Brewfest.
Next week is pumpkinfest and we're keeping the tradition of hanging out with my cousin's family.
Of course, that's after I have my own photo shoot for being Monadnock's Woman of the month!

The irony of Going from being called a "shallow, dumb bitch" and being Woman of the month makes me giggle. If that's the worst she can say, I think I'm doing okay. It's an opinion, not a fact.
 Then two weeks after for halloween we're going to see my sister for halloween's "boo fest" at a local zoo, one of x's favorite places.
That is, of course, once I get past this next round of chemo.

Friday, October 8, 2010

Picture Update

My camera has been broken since July (Please people hold the jokes about my new physique breaking the camera) Here are some pictures to update you:

Oh Yes, Xander is still trying to imitate Uncle Pat by trying to become a college graduate
at 7 years old.
My two favorite farmers, Jon and Xander take over the tractor

And you thought I was lying, the chipmunks are really domesticated. They will come up and crawl right into your hand for a peanut.

Pat wears the bow hat at Pat and Grace's Jack and Jill Shower

Two exhausted little men after playing in The Merrimack Soccer Tournament

Jon fearless leader of the troops

Grandma & Grandpa two of my favorite chaueffuers

Aunt Pauline, a favorite Aunt since forever

I told you I was attacked by cameras while dancing, and all those accessories are not to hide my tummy, arms, or neck, no sir, I have two very perky girls attached to m chest that just don't want to stay contained no matter what bra and how many safety pins try.

Finally, my nephew Pearce celebrating his first birthday


Congratulations to me!
I've been nominated and selected to be Monadnock's Woman of the Month!
What an honor.
 I am so excited and humbled that people know and respond to my experiences and the causes I advocate for.
I want to thank Beth Truman who officially nominated me, and apparently, knows quite a lot about me.

Here is her note nominating me:

I'd like to nominate Hillary St. Pierre to be a Monadnock Celebrated Woman of the Month.  Hillary is 27 years old and, despite a very daunting cancer diagnosis, has become a very active advocate for patient rights, specifically those of cancer patients, and also continues to work tirelessly towards her goal of creating Hillary's House.  Hillary's House will be "like Dartmouth Medical's David's House where people can stay while their family members undergo treatment or adult patients of Norris Cotton can stay while they're receiving treatment or recovering while getting frequent check-ups."  Hillary also assisted in saving NH from cutting its Catastrophic Illness Insurance program, advocated for an increase in the cigarette tax, and her testimony helped influence the decision to create an on-line insurance comparison website:  She is an involved mother and wife as well, and is an exemplary role model for us all.  To learn even more about how she contributes to the community in spite of her daily battles you can read her blog  She was recently honored at the Pink at the Park Swamp Bats game where she threw out the first pitch and she and her friends and family members collected signatures to add to her application to ABC's Extreme Makeover to help have Hillary's House built.  It is absolutely amazing to me that someone could have such big dreams even in the face of such enormous adversity.  She, to me, embodies exactly the kind of woman that should be celebrated. 

WIth warmest regards, 
Beth Truman

I AM SPEECHLESS. . .. for once! I bet you didn't believe that could happen. It's been a while since I felt such joy and excitement.

I'm most thankful that this nomination will draw attention to the causes I advocate for and will hopefully spread understanding regarding the struggles patients endure while living with cancer, especially in this new age where more and more young people are being diagnosed and trying to live normally as long as possible while maintaining the disease instead of seeking a cure.  

This time is the best time to reach for the stars to achieve my biggest dreams. As Monadnock Women's site quotes, "The Future Depends on what we do with the present." -Gandi

See more at

Thursday, October 7, 2010

Death by a Thousand cuts

I somehow managed to get a papercut in my mouth last night that will inevitably look like herpes, I just know it.
 How does this happen?
 By taking mepron (yellow paint like liquid to prevent pneumonia) right out of the pharmacy issued single envelope like containers. 
That's how that happens. 
Just another minor ache. 
This is like death by a thousand cuts. 
I think I have been cut ann poked or prodded a thousand times by now, but whose keeping count? 
My chest pain is officially costochondritis. 
I used to feel so cool knowing that big diagnostic word for ribs and/or cartilidge inflammation causing incessant chest pain. 
Its much cooler to diagnose it on someone else.
Everything is. 
Luckily, dr. G finally offered up relief in the form of motrin. 
Now I'm finally breathing a sigh of relief, literally.
Motrin and tylenol have been off limits for so long I never consider them first. 
I don't need gi bleeds or liver failure. 
That reminds me of a local 16 year old who received a transplant at Boston Children's that, unfortunately, didn't take. 
One of the risk of transplantation is failure of the graft to implant. 
If this happens, the patient's immune system has been erradicated through chemo, the back up has failed, sometimes another infusion of cells can be arranged but that may not happen and it probably won't take. 
In this particular instance, knowing the patient would die, nurses and family began giving her tylenol when the inevitable fever set in and kept giving it to her for comfort until she passed.
 Unfortnately the autopsy stated the cause of death was an overdose of tylenol instead of failure to implant after a bone marrow transplant for leukemia. 
The truth is this result just lead to confusion. This poor young girl would have passed either way.
The tylenol was for comfort while she was dying anyway.
I wonder how many deaths from cancer are erroneously classified as something else?
Major hospitals do track their patients and calculate their own survival rates, so at least we know that's accurate.
Sorry to leave on such a downer, but I'll have good news later ;) and pictures snatched from mom's camera since mine has been broken since July!!!

Tuesday, October 5, 2010

Mom Management

Even with the nasty pleural pain I've been suffering with I managed to coach X on Monday.
J was out of town and handling an excited group of second and third graders takes two people.
Luckily, I've tapered my duties down to stretching (sometimes), game time warm ups, and side line duties (subbing, making sure kids don't wander off, fight, etc.), and my dad could take the rest.
I could site in my comfy chair most the time I rotated players.
But still I was barely up for that.
I had to keep my happy nothing-is-wrong face on when I hurt so bad. I even packed for the cold New England Evening but nothing curbed the pain.
I got some of my yelling/guidance out of my system only to be left with a throaty, I've smoked thirty years voice and a hacking cough still.
But of course, it's all for the normalcy of X.
Then after X's comment about the home made applesauce (read up if you don't know) I obviously made him a home made batch of both apple and pear sauce.
He gave it the sniff test, said it smelled "Kinda good," then refused to eat it.
 He will be diving into that soon. HE just doesn't know it yet.
Good news: no pneumothorax.
Bad news: nobody knows what the hell it is.
It isn't a problem with my lungs. It isn't pain from my tumor. Both good news.
We're going with infection on this one.
I've had a sinus infection with post nasal drip for weeks now, which isn't abnormal to need a few rounds of antibiotics.
What is abnormal is the awful hacking it has caused.
The cough sounds like a frothy, snotty, scary mess, but it's not since all that snot comes from my sinuses.
So it's 21 days of augmentin for me. I did get some other goodies. Flonase. Generic expectorant from Rite Aide that really works, Hoo-ra.
Some great night cough suppressant that actually stopped my cough last night but didn't stop me from waking up every hour on the hour.
Forget that, I even was able to get up this morning and making X some apple and pear sauce (tis the season for all natural area fruits).
How could I not when I asked him this morning if he wanted me to make apple sauce and his bitter retort was, "Of course I want apple sauce. I always want apple sauce, but you're so tired. You're always tired."
Oh, well then. I didn't even muster up an answer to that one. I just took him to school.
We will be talking about that one though. He needs to know that it's not his job to look out for me. It's his job to be a child, and if he wants me to make something, all he needs to do is ask. My top priority is him.
He usually responds to those little talks for a while, but there's no stopping his from feeling like he needs to care for me.
At least the apple sauce and pear sauce were really easy to make.
I hurt.
This damn cough that has been around FOREVER and just won't quit is taking its toll on my achey breakey lungs.
Even more frustrating about the cough is that it's caused by post-nasal drip from my sinuses. It just drips and drips and irritates me and irritates me until I cough and hack and hack some more ultimately getting air in the pleural cavity (not where it's supposed to be) between the lung and chest wall.
Usually, in other "normal" people a pneumothorax is known as a "collapsed lung" most often caused by trauma.
Because I'm mean and my body is what it is I can get them spontaneously just for giggles.
Last year I was known to have one in the right lung that caused little problem except for pain. That area is fibrotic anyway and useless.
This time it's on the exact opposite side, and I want it cared for with a miracle cough suppressor super human decongestant.
I'm headed to the doctor's for some relief.

Monday, October 4, 2010

In my best interest

Like so many other times my family, my friends, and my community banded together to hide the death of a friend with cancer.
This time the martyr to cancer is Blaine Savage, a 40-something devoted husband and loving father who was diagnosed with multiple myeloma a year and a half ago. During his journey he was lucky to have a strong supportive family, especially his wife, Marleigh. No rock was left unturned, no option untested in attempting to treat Blaine's cancer.
Last year The two picked up their four children and moved to Blaine's native Utah where physician's seemed more familiar with the disease. Even the best efforts couldn't keep a child of God away from his father.
Blaine passed away August 4, 2010!
He died two months ago and nobody dared to tell me. I was wondering why I hadn't heard any updates, why I hadn't heard anything, no comment, no email, nothing from the Savages.
When I asked why I wasn't told I always get a mumbling answer about how sick I was at the time or that I'd been hospitalized and they didn't want to upset me.
I kind of understand the motive, and yes, I'd often rather not know.
As it's said, when in Rome, do as Romans do. When you hear those three words, "You have cancer." like it or not, you are automatically signed up for the cancer club.
You now understand emotions some people may never experience. You can empathize with staring your mortality in the face.
But you're still human.
You are not just a walking, talking bundle of malicious proliferating cells, though unfortunately, questions from everybody can make you feel that way.
The gentle, "How are you feeling?" The hugs that are suddenly just soft touches. The wondering of where you are in treatment, what, exactly, you have, what the prognosis is, and where you go from here (of course you're not likely to hear that prognosis is death and you're meeting your maker) are questions we all have dealt with alongside our internal battle to live.
It's the cancer patient standard question list, much like the senior in high school standard questions or the pregnant woman's questions.
I.E. For seniors: "So when are you graduating? What are you doing after? Where are you going to college? What are you going for? etc? Etc?"
Or for the pregnant woman, "How far along are you? What are you having? When are you due? Have you picked any names?"
Everybody is curious and we're all curious about the same details.
All of us diagnosed suddenly know intimate details about the other without ever speaking. We're bonded.
And yes, when somebody dies, it makes the possible fatality of my disease all the more real. It reminds me I'm not invincible. I'm saddened and again overwhelmed by the possibility that I could be next.
After over four years of fighting, I'm still not ready, not perfectly comfortable with death.
I avoid funerals, especially when the death is by cancer, especially if it was someone I knew and loved. We all need boundaries to cope, and this is mine. And I suppose my family and friends are acting in my best interest when they make these decisions.
So when one of us dies, I'm often the last to know.
Please take a moment to remember Blaine Savage and Visit his blog

The pictures here are from a recent family trip to Seattle, one of Blaine's final wishes to repeat his honeymoon.

Sunday, October 3, 2010

I spent this week resting after chemo on Monday.
And by resting I mean nothing but sleep on Tues, Weds., and most of Thurs.
Thurs I had to ease myself out of sleep mode so I went grocery shopping with Deb.
I had to save my energy for my brother's wedding, which was absolutely fabulous and worth all the rest.
Rehearsal dinner was Friday night and I managed to check out all the festivities. I got to eat, drink, and be merry.
On Sat. X had his first state shoot out for soccer. . . .. in Dover NH. . . . 2.5 hours away.
We had to be out of the house by 6:45.
He placed 4th but still had a good time playing with cousin Carter and making some new friends.
Even better, Meme and Grandpa (Jon's parents) took them out to Chuck E Cheese. Can life get any better? Soccer and Chuck E Cheese?
I managed to get out of bed at 6:20 am and not crawl back in until 9:30 pm.
That's an accomplishment.
And I didn't even take my ritalin!
Yay, go- me!
I managed to dance at the wedding, which was my ultimate goal. I hadn't danced at a wedding since Heather's 2 years ago.
I have, however, danced at Bachelorette parties many, many times.
I didn't realize the excited skeptical that would be caused by me hitting the dance floor but the cameras came out like Lindsay Lohan with the paparrazi.
So todays "just chill" time has actually been turned into an all day after party celebrating my nephew's 1 year birthday. Congrats Preston!
I'm out to rest.