Big Day

Big Day for the StPierre-Ford Family Yesterday!

As some readers know, I was honored at the Keene Swampbats "Pink Night" last night in hopes of getting Extreme Makeover to build a "Hillary's House" for adult patients at Dartmouth Medical Center.
Big thanks to the fam for coming out and supporting me.

Great Job Aunt Lysa who went through the stands to get signatures.

To make a good day even better, guess who got his Green Builders License?
Yes, that'd be Vic, my father, who has been working in the construction industry his entire life but began specializing as an ecologically friendly builder about 6 years ago.
He is one of only five certified green builders in the state, and the only one residing in our area.
He's all ready an energy star builder, and with my brother, Patrick, getting his Civil & sustainable engineering degree, they're ready to save the planet.
Check out the proof at http://www.nahbgreen.org/WhoIsGreen/findparticipatingbuilder.aspx
If you want to see more of his company, and some of his previous energy star certified homes, check out www.5eaglesdesign.com


Soooooo. . . . . I guess those fabulous people at ABC don't have to worry about finding a builder to oversee this fabulous project they're going to take on to help all the sick people traveling in and out of DHMC.


Mom is recovering. I haven't had the time with the chaos this week to update everybody on her surgery, but it went as well as possible. Both hips were done arthroscopically and those angry bursas have been scrapped off. 
With the pain control the day after surgery she was in less pain than she had been in years, but that's worn off and left her feeling edgy and agitated but unable to move.
 She did manage to make it out last night to watch me throw out the first pitch at the game, a gorgeous slider that put both pitchers to shame and had the catcher shaking his hand in pain. . . . . . just kidding, but I did make it all 90ft over the plate.
Go Me.  

Real Quick From Vic

Hi All
Just a quick not that Hillary is throwing out the first pitch tonight at this Baseball game!! While she has been doing much better with the last 2 chemo treatment she has kept her mind and computer busy doing a fund raising project for Hillary's House.  I know it's a project similar to Ronald McDonald House and David's House for a place to stay at Dartmouth Hospital.

She has lost her hair again and is nearly completed her steroid use. She doesn't think she should be on steroids and throw out the first pitch in a baseball game!!  She can show the College age teams that they may look like her if they take steroids!! No Hair, bloated and 3 tubes coming out of her chest. But that will not affect her throwing arm. Catch her tonight. Jonathan Lester is pitching for the Red Sox tonight. He got lymphoma at the same time Hillary did but has completely recovered. That must be where Hillary gets her strength.

See the Swampbats!

Come out For Pink Night!

Friday July 30 at 7pm

Alumni Field @ Keene High School

vs Holyoke

Join Keene's Swampbats, Clarke's Companies and my family for some All-American fun: 

Baseball and Cancer Awareness

Yes, me and my lymphoma are taking over Pink Night and turning it Purple to promote my most recent, endeavor- 

getting Extreme MakeOver Home Edition to Build a "Hillary's House" for adult patients to stay during treatment at Dartmouth Hitchcock Medical Center in Lebanon!

Can't go but want to show your support?

Share This EVERYWHERE!

Storm it up: blog it, post it, email it, and

Sign-up for the facebook cause at

http://www.causes.com/causes/499245?m=d16eb6fe

Want to do better?

Print Out My Application Answers

http://baldiesblog.blogspot.com/2010/06/extreme-makeover-home-edition.html

Recommend me to ABC:

Here is the link to print out the application:

 http://abc.go.com/shows/extreme-makeover-home-edition/apply

Mail it to:

Lock & Key Productions
C/O Family Casting
5160 Vineland Ave, Suite 107
PO Box #419
North Hollywood, CA 91601

Naughty, naughty me

I've been naughty. 

I went a little crazy.

Then I started tinkering.

I got a little antsy with my meds. 

I think the prednisone, decadron, ritalin combo might have done contributed. 

Eitherway, I was bad. 

I needed to flex some control. 

I needed to remind myself that I'm boss over this body, even though I don't even recognize it anymore. 

How the hell did I get here anyway?

 It's theorized there are three alternatives for each decision and life splits into alternate dimensional planes based on these differences. 

This sounds over the top and boggles my mind with options, but This idea was what really sent me into emotional crisis mode. 

For one little second I let myself envision the life that may have been, the one I dreamed of, the one where I didn't get sick and reached my potential. 

Worse, it wasn't me I was saddest for.

 It rarely is. 

My life, my plans had little to do with me.

 I was going to get my NP and have a quaint free clinic in claremont with my adopted kids I smuggled in from haiti way before the quake made people pay attention.

 I was going to be simple and country and give back to the community that helped raise me one by one. 

J would have his degree and boat and workshop and toy, toy, toy etc.,etc.

My nieces and nephews would be all spoiled and we'd have weekends at the beach house.

SCREEEECCCHHHH.

Put on those breaks.

Nope. Not going to happen.

Not going to help others. 

No helping heal others. 

No at home orphanage with kids from fourth world countries. Instead, I tinker with my own pharmacy. 

I cut the decadron in half for my 2 days post meds. I'm now taking 5mg of pred daily which I started sat. 

Next mon, I'd like to start alternating btwn 5 and 2.5. 

I never upped the dose to 20mg like I was supposed/told to.

 Didn't like what that would do to my long term goal.

 I want off steroids and I want it now. 

No more big belly bulge.

 No more four chins and hairy hump back. 

I've had it.

 I don't look like me and I don't feel like me. 

It's been a long time since I sang at the top of my lungs or danced in the car. 

I don't think of funny stories to make myself laugh when I'm alone with myself. 

I haven't laughed so hard I couldn't breathe in forever (and it's easy to keep me from breathing)

I'm angry, easily frustrated, and intolerant.

I'm all screwed up.

I'm even balding backwards.

The cross in the back of my head isn't a cross anymore. It's just more bald space.

 I'll check with Boston sometime about my changes, but I had to cancel Mondays appointment because of the chaos this week. 

I'll try not to go crazy and play heme team on myself, but Aug. 9 I'll again be trying a full dose of some drug containing "blast" or "bam" in it. 

I'm changing chemo dates so I can enjoy some weekends.

Don't under estimate the impact of a father telling his little boy to "watch out" for his mom while he's away. 

That job is taken seriously. 

I didn't even know the responsibility bestowed on x until my mom tried to separate us so I could take a nap. 

That request was met with a big screaming, "Nooooooo!!" It took a second to figure out if he should be punished for being disrespectful, seeing as he'd never reacted like that before or search for the root cause. 

That"s when we were told about x's job for the week. 

I was wondering why he was playing all my board games and card games so pleasantly by my side.

 I quickly explained to him "time off" and gave him a lot of it, though he's still pretty attentive.

 I am enjoying miley reruns with lots of uno and war games now.

 I finally got to attend a soccer game, which I've been sleeping through from the chemo. 

I got to see x score 3 goals in a 3-2 win over one of the strongest teams. 

I never thought I'd take 7 year old soccer so seriously but x wanted to win. He was busting his ass to do it.

 I love watching him, especially when he moves like me, even though he's never been taught. That's the magic of having a child.

I may get him into a soccer camp for next week. He seems to love it. It's a great outlet.

He seems to take it a little too seriously though; hence, the near break down when my mom and I mistated that he only scored two goals and not all three in yesterdays game.

My goodness.

I don't know how he'll survive only scoring two goals. 

I have a little perfectionist on my hands.

I can confidently state: this is not entirely my fault.

I try to get the kid to chill, but he takes these things very seriously.

Hmmmmm, he does get this perfectionism flaw from both sides, but I'd hoped it would hold off until, say, high school or so. 

I've been lucky that he's had Reading camp through the school this summer and then we were able to go camping as a family together. Now I think maybe a soccer camp could be in order and I'm planning what I hope to make an annual trip to the coast for J and my birthday.

Good things. Good things, but it is still up in the air as to who is takign  care of who.

"Everyone thinks I'm going to die." 

"Well, if everyone thought that about me, I wouldn't do it." -The Secret Garden.

 I keep having a recurring dream that I have a big book report I need to finish to graduate high school and I haven't finished. I can't even remember where the class is its been so long since I attended. Sometimes I'm absent from skipping or from an illness. I wake up stressed thinking about how ironic it is that the subject holding me back is hs english, the one subject I enjoyed. I've got to wonder what it means. I'm reassured that I'll fulfill my contribution to the world, which I think is life's purpose, but I must be feeling like time is coming up and I haven't quite worked my magic yet. I think the purpose must be simpler than I believe. I mean, why high school english?

 The one full bald spot I have is in the back of my head in the shape of a cross. It's a funny place to have a bald spot. It doesn't follow normal rubbing patterns but its there and its definitely a cross, which makes me smile. I feel like I've been marked for good.

Pictures from vacation are coming as soon as I can stay awake long enough. These pics are going to make you all want to run up to the great state of NH.

We left camp with a bang (literally thunderstorms were rolling in and predicted through yesterday, Sat., which was supposed to be the end of our stay) so we got out of there Thursday in time to make it home, clean out the camper, put the house in order, Have J do some masses of laundry (it's in the basement and off limits to me) while I prepped some food to eat while I was sick (my seven layer taco salad and pasta salad mix) all in time for my therapy sessions on Friday.
I'd been making phone calls all week to arrange Friday so I could have both pheresis and chemo, but come Friday I just didn't want to subject myself to al that nastiness.
I ditched the pheresis making what would have been an 8am-4pm day at the hospital an 8 am- 12pm day.
I still went home and slept through ANOTHER of x's soccer games, which I hate, but come Saturday I was able to sit up, talk, hold conversations.
I folded clothes. I talked on the phone. I typed on the computer.
I'm doing damn well.
Hmmmmm, this leads me to think that maybe all the terrible side effects had something more to do with the extreme shock to my body by having both pheresis and chemotherapy at the same time.
That is quite a shock.
I take most of my blood out to manipulate the white cells then I take the elevator right up stairs to ingest a medication used to kill off those cells among others.
It's havoc.
My immune system doesn't know which way to go.
Without the double whammy, I'm doing better. I'm doing so damn well I wanted to cut back on my prophylactic meds.
If I can fold through a couchful of laundry the day after chemo, I think I can drop my decadron dose. I'm also barely feeling nauseas. I've been able to eat and drink well when I'm awake.
No use pouring more toxins into me, especially a very scary steroid like decadron, but who, exactly, would  I call on a Saturday to okay a dosage change like that.
I ran the options through my brain. . . . . .
If I was at Dana Farber, which is very patient centered, I would possibly be able to get ahold of my very own transplant specialist. If he wasn't available, I'd talk to his associate.
If I called Dartmouth, I'd probably get a fellow who wouldn't know who the hell I was or what the hell to do with me.
They'd probably tell me they had me listed as palliative care and go die somewhere
Weekend care is a problem.
It is. It always has been where ever you are, whether you are an inpatient or outpatient.
It's just a little scarier in some places over others.
I cut the decadron dose in half based on what I felt safe doing.
It scares me, just a little bit, the liberties I take with my medications due to my inability to access qualified opinions.
You would think after paying out millions of dollars into the medical system, I would at least receive a medical opinion on a Saturday.
In any other industry, almost a four million dollar investment would make me a hot commodity.
Not in health care, no sir.
As an answer, There has been a proliferation of on-line medical services where you can seek advice for mild medical problems. Most require a monthly fee, but due to liability, will overlist all the possible diagnosis and still refer you to a real, living, breathing provider whether or not it sounds like you just have the common cold.
Symptoms of the common cold can mimic symptoms of leukemia as well so until these websites include cicscos satellite care system, they're probably a waste of time.
They're a waste of time of mine, because I don't have the time or energy to type in over four years of medical history to explain how I've ended up where I am, here, mostly bald, which takes attention off my  swollen face from all the steroids on baby chemo that almost killed me playing spin the bottle with cancer therapies.
In good news, two of the Senate Bills I advocated for, SB 505 (establishes the commission on health care cost containment and establishes a one-time assessment on hospitals, ambulatory surgical facilities, and health carriers to fund the operation of the commission.) and 392, (This bill requires the insurance commissioner to hold an annual public hearing concerning health insurance costs to identify and quantify the factors contributing to cost increases in health care services in New Hampshire. The commissioner shall prepare an annual report to be submitted to the governor, the president of the senate, and the speaker of the house of representatives. The requirement for public hearings is repealed on July 1, 2014.This bill also requires hospitals, when billing self-pay patients, to accept as payment in full an amount no greater than the amount generally billed and received by the hospital for that service) has been signed into law by Gov. Lynch.
If you didn't know, now you do, previously, self pay patients (those without insurance) were often charged MORE for procedures than people with insurance because the insured were able to receive the negotiated group rate where the uninsured had no one representing them. SB 392 now makes that practice illegal.
The celebration party with the Governor was Friday, which unfortunately was a no go due to therapies.
So I have big hopes this next week will go relatively well.
I'm packing our bags and moving into mom's tomorrow while J is packing his bags and going to Cincinatti. It won't be too much of a feat since all our clothes are clean and folded just waiting to be thrown back into suitcases for another week.

cancer casualty

There has been another casualty to cancer...... My hair. Yes, again, the writer of baldies' blog is bald. Velbam doesn't cause complete hair loss, though one study done where recipients were told they were receiving chemo but got saline instead, 30 percent still lost their hair. My hair left for several reasons. Chemo hairloss is not painless. Your scalp starts to hurt, like it's taking energy for the follicles to hold on. Sometimes it tingles. Sometimes you don't even want to rest your head. The body hair I shaved a month ago hasn't returned. Hair in, ahem, other places, has thinned. I'd kept my hair by not brushing, not washing, and pretty much just not touching it. That was until someone came down with lice. I don't think I had it, but after checking someone's hair I found a bug in my nail that could have been lice and could have come fro my head. My hair wouldn't have survived the treatments. I was okay thinking, at least, it would make the person feel better when immediately after my head shaving the darlings says, "oh, you look like a man.". On a different day, I may have let it slide, but my med combination is effecting me. All the morphine can make me weepy, the ativan makes me sleepy, and the ritalin, which has done wonders allowing me to have full, normal active days puts me on a jittery edge (think you drank expresso when it's usually decaf). I, apparently, jumped all over the popcorn guy at the theatre for trying to butter the top half of my popcorn. This is according to J. I just remember feeling with my whole body it was very important not to have the butter, which usually makes me sick. Anyway, this comment compounded with the fact that each time I've lost my hair I've received an equally rude and ignorant comment about my appearance sent me over the edge. I had to go shower and hide. I do feel comfortable now that its gone. People again are extra polite and helpful, which I need to function. I'm also trying to prepare for next week. I get chemo today and will be out of commission until about weds, but j goes away on business sun. I'll stay with my parents, but mom is getting surgery on her hips tuesday. We're just a little nervous about how it will go, but just like everything else, it will go. At least I won't have my hair to worry about.

highlights

There has been just too much excitement this week so I thought I'd fill you in with little anecdotes: our first night I went to bed early leaving x and lex with my mom and my grandparents. Usually the trash is hidden away before dark. It just didn't happen that way that night so when mom and the kids came back from their evening bathroom trip, who was holding the door to the camper? One happy skunk having a buffet in the trash. The kids froze, scared to death that the skunk may do something other than make them stink and require tomato and vinegar baths. My mom waved her flashlight at it like it was a magic taser and hollered, but that skunk just glared back, claiming it's territory. The kids climbed into the car and waited for the skunk to finish its meal. We haven't made that mistake again. That hasn't stopped the cleaver raccoons which have both brains and hands with thumblike claws. They will unlock your locked cooler, take out the goods and shut it again. One did it to us. It opened the cooler right up, took out my grapes, shut the cooler, had its feast right in front of our camper while we slept only to leave the torn bag and an empty stem where my fruit once was. Then, what does j do when he makes the discovery the next morning? He throws those grapes right back in the cooler like, maybe, I don't mind sharing my food with some ferrel animal.... Just kidding. We were smart enough to have ousted our trash the night before and our cooler was then functioning as an interim trash until we had time to deal with it. I could go on and on with man vs. Nature stories. We've been feeding the chipmonks by hand, seeing how far they will go for a peanut. They'll go pretty far. One year we tied a fishing wire around a peanut and reeled that chipmonk in, and did it hold on for its life. We had it swinging from one end of the site to the other. I know, I know, that is not a redneck thing to do at all, and PETA please no phone calls, no chipmonks were hurt in our silliness. Thissyear the kids simply named the rodents Ben 10 and saw how long they would Stay to be pet while they fed them. One of my favorite stories so far is not man vs nature but man vs man with my brother-in-law against two loud drunken neighbor campers that kept my nephews up with their drunken curses and threats against their partners (think, "I'm gonna f***ing kill you" etc.". The next morning my peaceful but very muscular bro puts on his favorite muscle shirt, bandana and heads over for a chat, which I hear went something like this: allen walks over to the group at their picnic table and says, "I hear you like to swear and threaten people. I have two boys who I don't like hearing that" eyeing the two offenders. He then takes his fist. And crushes the can in front of him."So we're cool?" He asks, before turning and walking away. The neighbors were gone within a couple hours. And imagine, those are only a few adventures.

vacationing sick style

Three kids equals.... Too many kids. At that point, you can just add to the brood and no one really noticesbecause it is all ready chaos. But there is a world of difference from two children to three. The family dynamics change completely. We'd offered to take our nephew camping before I knew I would be getting treatment, and we just couldn't go back on our word to a seven year old. We contemplated exchanging kids and sending lexi back, but we just couldn't do that either. Needless to say, our vaca has not been so relaxing, but the kids are enjoying it. Finally, after I almost made good on my threat to send c and L home early are they all getting along. We'll still be cutting our stay a little short but only due to treatment. I still went to dartmouth for pheresis last thursdAy. Lexi and x stayed at the camp with mom while my grandparents cAred for me. I. Blessed. I'm a lucky girl. It takes a whole village to care for hill and family. Aside from this little cancer snaffu life could be perfect. I go back for another round of chemo, velbam again at 3/4 dose with a decadron regimen on friday, hence leaving thurs. We've had good times. Plenty of relaxing full beach days with s'more filled campfires at night. We hit a rock sale that could have doubled as a museum this weekend where the boys bought shark and dinosaur teeth, lex got little figurines and I bought some beads to make jewelry. It's been hard explaining to the kids they are not entitled to everything they see, even on vacation or if another family member is buying. We've decided we'll buy each child an outfit on top of supplying the outings. They have camp chores to be done daily with a "special prize" if they're done with exceptional behavior. After lots of threatening yesterday, we're finally in a peaceful place where the kids agree on bike rides and beach games. I have been able to get my naps and go to sleep early or stay awake with the help of family and my ritalin. The ritalin does make me jumpy and neurotic. That coupled with steroids, cancer and menopause has given me hot flashes with cold sweats that only the devil himself could have made. No wonder I lose my cool (hehe punny, huh). I did discover climacool clothes which are the perfect remedy. I'm in love. Finally some comfort. I'm buying clothes at the tax free outlets up here, finally, to accept my current body. My size isn't what bothers me, though this is the first I've been noticing other women's shapes and sizes more with a clinical curisity than anything, what bothers me is the constant changing, the never knowing how I'll be able to move or be shaped, never knowing what clothes will be comfortable, or the worst, never feeling like myself. So I've broken down to get some comfy clothes, but camping with five and clothes are costly. We had saved for patio furniture, which was supposed to be a mom's day present, but instead I'd much rather spread the wealth for a good family experience. We saw the sorcerers apprentice during the rain yesterday and ate at "the muddy moose," a camping tradition. We plan on spending a day at "monkey tails"a rope course with zip lines. It's a toss between that or "uberblast" an indoor fun spot with laser tag etc, but rright now, I'm feeling broke and hoping we can just enjoy the simple things, like biking, swimming, kyaking, and campfires.

Sweet! I am back on! Large aNd in charge with my new berry. And not a moment too soon as I'm suffering my first bout of insomnia with my crazy med regimen. I have started taking ritalin so I can have energy to enjoy my days but this lends to an upper/downer cycle. Ativan at night, amphetamines during the day. I always wondered howq patients end up where I am now, with an open license to the pharmacy. The curiosity was more judgmentaal than anything. "They're just functioning drug addicts!" I'd scoff as I looked at med lists. Little did I know how much pain and suffering occurs before anyone practitioner prescribes any one med. It isn't an overnight free for all, but it is what allows me to live. Its what has allowed me to lounge aat the beach, sit by the campfire and sleep in the woods for the past week. Its what has kept life "normal" for me, just like my bactrim, acyclovir or folic acid are needed to keep my red blood cells healthy or my immune system bolstered for a fight. I'll never again judge. I'm sorry I did, but now, I think my sleepy meds are kicking in. I'm still camping and plan to until I get chem fri. Jon and carter joined x, lex, my mom, grandpArents and I. We also have the extended "wilder side" of the fam here for the ttaditional vaca. I'm excited but on edge and jittery trying to manage my steroid and med adled ass while juggling maniac excited kids who see so much to do....

Going Solo

I'm leaving on family vacation tonight. . . . . . . without a cell phone!
Yes, I'm going bare.
I'm going out into the wilderness without my beloved smart phone.
That means no internet, no email, no phone calls.
This isn't my choosing.
This is part of the never ending cat debaucle that killed off my blackberry and plunged me into the abysss of finding the perfect cell phone and service for rural NH.
It's looking like a droid from verizon, but only because J gets to make those choices.
If it was me, I'd be running back to my handy dandy black berry.
I'm alive well and on vacation if you're wondering why I haven't written.

Camping

I smell like chemo, cancer and sweat.
It's a combination of sick and sweet that no person should ever become familiar with.
I've spent the last four days working up the motivation to sit at my desk to type.
If my memory serves me correctly, it took five days for me to recover from the ABVD therapy four years ago.

But I'm not giving myself another day.
I'm going camping tonight with X and Lex.
It's tradition.
This is the first year I've really met this trip with ambivalence.
Every year I'm nervous about whether or not I can handle the stress camping places on my body.
This is the first year I'll be in active treatment while trying to camp.
Luckily, we camp with a large group of very supportive extended family members.  They let me nap while my mom, grandparents, sister, whoever take over.
The kids are also seven and ten now.
That makes a difference.

You'd be ambivalent too if your first forei into the waking world after chemo had you stand and pass right out.
I'd say it was orthostatic hypotension.
My blood pressure just got a little low, but on Saturday I stood up from napping on the couch and made it ten feet into the kitchen before the world turned black.
I tried to holler.
I gurgled.
I grabbed.
I guess that's how falling/failing happens.
One second you're awake and alert, the next you're trying to holler for help and wonder why no one is coming.
X, of course, heard me first.
He's very intuitive when it comes to his mom.
I wish J had that intuition.
It would spare X the fear.
Instead J had the surround sound on  and I opened my eyes to a very scared seven year old screaming for his dad.
I slept most the day yesterday too, waking only to spend a couple of hours at the pool with the kids and try to pack for vacation.
I've done a good first pass at vacation packing. It will be done for tonight. I'm packing with the understanding that anything I forget I could buy there.
Also, I clearly have no problem being dirty, seeing as I haven't really showered since Thursday or Friday (your guess is as good as mine).

Dr. G and I decided on a plan of action that included continuing the vinblastine at half the dose I previously took but blasting all the possible nasty side effects with steroids and any other palliative medications we could get our hands on.

I have to admit, my medication planning with palliative care was one of the best ever. I left the office with an arm length worth of scripts, lots of pain control, marinol, amphetamines, steroids.
You name it, I have it.
This is what happens, I guess, when most treatment fails.
The goal becomes solely to have a good time.
I wonder why it takes people so long to get to this point?
Shouldn't we all be working towards having a good time from the get go?
If that is what the priority is in the end then that's where it should be in the beginning.
Unfortunately, even with the decadron, prednisone, and ritalin I slept the majority of yesterday.
I will pack today.
I will get X and Lex to camp.
It's one of their favorite things to do all year.
It is their favorite tradition, even if all we do is play ball outside and go to the beach.
Tradition is important.

Joe Chemo

Dr. G and I put our heads together and decided on a plan of action that I think may have even surprised ourselves a little.

After four years, I am well away of the style of doctor he is. HE is an all-out, in-it-to-win-it type of guy. When there is a cancer there, he wants it gone, quickly, then he'll gently back off and watch closely.

This went well wih my balls-to-the-wall, do-or-die attitude I attacked my disease with.
I didn't know how it would go over with my new mind frame: to treat quickly and efficiently, but with the least side effects possible.
The velbam did not give me the least side effects possible.
Actually, it did the opposite, it sent me straight up to the hospital and gave me no healthy rest time between treatments.
It is also postponing my yearly beloved camping trip.
I was going into the office giving this chemo a big D-.
What it did have going for it was that it shrunk one of my tumors with just its one treatment.
That is a major bonus.
That one factor is what kept the drug on the bargaining table.
So guess what we went with.
Yes, the vinblastine, with lots of medications to ward off side effects.
The velbam dose was cut in half. Prior to its administration I was given benadryl and decadron.
Friday, I took 10 mg of decadron along with my normal 10 of prednisone and also added in 25 mg pf benadryl for good measure.
This was alongside the arsenal of anti-emetics: marinol and ativan plus pain control.
I'm treating my mouth as if it is all ready acting up with an herbal dentist rinse, special toothbrush, colgate prevantil 5000 toothpaste and decadron mouthwash twice daily.
I am also sleeping, sleeping and doing more sleeping.
I didn't make i to X and C's game last night.
The cousin's didn't come over to spend the night.
I got my chemo Thursday and have slept ever since.
It's now Sat. morning and I'm considering moving.
I have gotten dressed.
I've taken my pharacy worth of drugs.
I'm headed to the marinol to force some food into me, and we'll see how the day goes from there.
I'm hoping to be well enough to start our camping excursion Monday after our soccer game. This will only put us a couple days back. I'll have to scurry back to DHMC on Thurs for my pheresis, but otherwise, no treatment for me for another two weeks.
Plesae pray that I can enjoy my time away with the family.

Friday

I'm suffering through learning new technology: new phone, new video cam, New software, new blog layout. 

I don't want to learn this now.

But I am, today. . . . maybe. 

I'll synch our phones. 

X had his first long fieldtrip yesterday to the zoo at Southwick, only about twenty minutes formmy sister's home in Mass.

 He loved it and now wants a bird. 

No way in hell, a bird would be indoor catfood with droppings and feathers all over but in my chemo whoozy side effect busting mind bending drugs, I almost said yes when he asked for the bird as a pet.

 Ugh. 

I caught myself as x started to crawl toward me, arms outstretched leaning in for a hug, kiss, and snugglefest he only reserves for when he gets something he really. Wants. 

"Oh no. Oo no." I say, coming to my senses and launching into the reasons: its dirty. We can't clean it, no time to feed it, the cat would eat it and dad says no too. He can visit at the pet store, then I fall asleep, feeling ok, and hoping I Am recovering.

Anticipatory Symptoms

I thought I was big and strong enough, psychologically, to ward off an occurrence of "anticipatory nausea."
Anticipatory nausea is a psychosomatic symptom brought on by a patient's expectations of becoming sick.
For example, I may get chemotherapy today, my body is psychologically preparing itself for sickness, against my will and better judgement, so I've been feeling nauseas, ready to throw-up at anytime.
Ativan is a really good medication for this.
It's an anti-anxiety drug that deals with chemo-induced nausea as well.
It's a favorite of mine.
It does make me sleep though, and I'm not too happy about losing an evening to a hazy sleep the night before I absolutely have to.
It's better that it used to be though.
During my first transplant I couldn't even look at a hospital bed without wanting to vomit.
At the time it was so bad, I was worried I would never work again.
Not a concern anymore.
My biggest concern today was getting X off the camp where they're visiting the Southwick Zoo today.
He's in Charlestown's Summer Reading Camp, which we both had suspicions may just be a cover for summer school, but appears it is really fun.
X is loving it.
Some of his best friends are signed up.
It's the third day and they're taking a major field trip to a zoo.
The zoo is like X's mother ship. He's on a mission to see as many as possible.
Ironically, I think this zoo is only about 20 min. from my sister's house. We would have hit it up eventually with her family. We probably will again anyway.
Who can resist a good zoo?
Wish me luck today, I have no idea what I'm in for.
I know I have early morning appt.: labs at 8:15, Heme Doc at 8:30 to discuss chemo options.
I've been holding off my camping trip plans for this.
Usually I leae with family in tow on Saturday. We'll see what happens.
Options are: keep the chemo, change the dose, add steroids to chemo, or change it all together.
Lots of options, but no idea what is happening today except after the heme doc I'm seeing palliative care to confirm the success of my new prescriptions and then on to photo pheresis.
I'm also working with the aartists at DHMC to "pass-off" or partner on my Cancervivor Arts program.
The business infrastructure is set up but I don't have the energy to maintain it.
I'd love to just be able to hand my art over with a portion of the proceeds going to me and another going to a good cause, like to fund therapeutic arts at DHMC, which right now has no funding source other than donations.
They've been doing well so far, but I want to keep them running.
Cross your fingers and say some prayers for me. I'll be at the hospital all day.

Droid Life (Coming Back Around)

I'm finally coming back around.
I try to, theoretically, give myself a week of recovery for every day I spent as an in-patient.
I heard this is the typical recovery time for patients somewhere, and it makes sense.
This would allow me four full weeks of lying around on the couch without contribution.
Theory is very different than real life.
It hasn't even been four full days, and I'm all ready trying to jump, full swing, back into projects.
I hate watching J scramble around kingdom come making sure the house is arranged the way we like it.
I feel useless.
There is no worse feeling than that.
First things first, I need to get some technology back.
I'm having withdrawals: headaches, irritable mood swings. I NEED a smart phone.
It's no longer a want.
I'm too weak to lug around a laptop.
I'm too overwhelmed to remember everything I'm required to, especially my full time appointment schedule, along with X's camp/soccer schedule, J's work/softball/appt schedules.
No thank you.
My mind didn't even like making that list of responsibilities.
I'm ready to go back to sleep all ready.
Instead I'll learn to program my new droid which we got in replacement of the curve my cat killed.
This way I'll have my electronic brain back and I can go back to fooling people that I'm a functioning, semi-organized individual.
I missed the HEIPI teleconference meeting yesterday that took place at gotomeetings.com due to the loss of my schedule.
Can't have that happening.
The Droid and sprint service are on trial for 30 days. I'm not so impressed with having to learn another technology.
I liked my curve, but c'est le vie.
Today I'll be reading manuals and programming.














I may also be packing a little in hopes of a future (cross your fingers) camping trip.
My family has an annual tradition of going to the White Mts. for two weeks every year in July.
I'm not sure what, exactly, I'll be able to tolerate. That information relies a lot on what Dr. G says at our appointment on Thursday regarding whether I'll be staying with the velban, decreasing the dose, or stopping and changing therapies all together after that debacle last week.
What I do know is if I were to leave for two weeks on Sat. I'd need to be packing for us today, and that's not happening.
Hopefully what's happening is I'm getting to the pile of dishes, finishing the pile of laundry, starting packing, and lying around doing my art and talking on the phone FINALLY catching up with my girlfriends.

I'm a lucky Girl

Regressed memories are very real.

I can testify to that as an absolute fact.

I don't remember almost 30 days after my first bone marrow transplant.

I remember bits, mostly the good times, when someone staying somewhere did something fun with me like playing with make-up, taking pictures. Little things.

I remember there were some decent times and I can do it again.

I don't remember the pain and how terrible the side effects were.

I dont even want to type about them now because saying it may  jinx me. It's like saying beetle juice three time. . . ... . .

I wrote this before all hell broke loose.
Somehow, somewhere in me knows the process of my body starting to break down and I can indentify it. It buys time. It's a large part of why I'm alive.

Sometimes I also wonder if I became and over ahceiving ICU/ED nurse to keep myself alive.

I certainly didn't get to work at it very long.

I think I've saved myself more than anyone else, but I have to say, I call that a good investment.
Tonight, I'm awake.
This is part of my healing process.
When my body goes haywire my circadian and normal body rhythms are thrown around like I threw them in a tornado, but the end is one night of insomnia.
That's all, not too bad, and that's tonight.

My big life threatening illness adventure started last Monday when I started experiencing some pain in my mouth that made it difficult to eat. I went into the clinic for fluids to avoid hospitalization.
 Tues., the pain had progressed to where I could drink ice water and eat vanilla ice cream in small bites. Again I went into the clinic and tried to avoid hospitalization by playing with my pain medications and getting fluids.
Weds. I took a little more morphine than my practitioner and I were comfortable with and went to the hospital doubled over and in tears. Alongside al this pain was a headache I think was separate.
All this after just one dose of velban.
It's a little scary.
Again, I find myself fighting for my life, but this time, it was more difficult.
When my mind is hazey I can't focus on my survival techniques. I can't focus on the ones' I love and my ties to the world. I'm very lucky to have loved ones who sit by my side during the worst.
Just like most admissions, I worsened as an inpatient. I was put on a patient controlled analgesic (pain control) so palliative care could tally how much I was taking and get me home on oral medicine.
But the pain just didn't stop.
When it did, I was whoozy. I was loopy. I couldn't hold a sentence.
I don't even think I was coming out with funny randomness.
I just think I was talking crazy and scaring my family.
This time, for the very first time, my family was asked on multiple occasions if I wanted to be resuscitated.
This didn't go over so well with my family.
I think there is a little miscommunication in what I hope to accomplish taking this route of chemotherapy. I'll be talking to my providers about this, and quickly.
I don't want information withheld because someone makes an assumption that I'm not interested in a surgery because it goes beyond keeping me comfortable.
I want to live with my cancer. That's the idea.
It's a difficult concept to explain, but now I know it needs explaining.
Saturday my head cleared and Sunday the Doc had me discharged by 8am.
That's a personnal record for earliest discharge.
I think I should sign him up for the Guiness book of World Records.
Sunday I laid around, only a little sad knowing I was missing two birthday BBQs.
It is solace knowing that maybe, hopefully, I'll be able to attend healthy next year.
I was also able to nibble food all day and chill with my sister and her family.
Finally, today, I found my craving: Mac 'n cheese.
I was finally able to eat what somebody would consider a meal! I also didn't require a nap. I was able to attend X's soccer game, but in a nasty cranky mood not only bc it was 09+ degrees, but because I'd misssed my midday pain control dose.
I need to get used to that new schedule.
Now, I'm  up past my bedtime puttering around, like I always do at the end of a life battle.
I crawl into bed and pray, like I try to do every night. Then I start to reflect on how I could do things better and pray for others. Then I think about plans for saving the world in general. I think about reading, writing, art, projects, anything to relax. Usually I give up about 11pm to catch Chelsea Lately and get to bed by 1 or so.
Not so much damage done. I'll need a nap tomorrow, which I'll be able to have since X starts reading camp.
I don't know how I feel about having him away from me for weekdays during the summer.
He got right back into our last years' summer routine as soon as school was out. He bought some cross word/word find books, math books, and dr. Seuss books to read. He'd bring out a different game to play every morning and come up with projects.
I was amazed at how clearly he remembered what we did last year.
We didn't get a chance to do those while I was in the hospital, but what X did do as soon as he heard I was admitted was come home and clean my car!
He cleaned my car!
I can't believe my little 7 year old boy would be so loving and empathetic. He tried to do it all by himself at first, taking the broom and handheld vacuum with him before Dad showed him how to use the real vacuum.
He took the mats out and replaced them. Cleared all the garbage.
I love it. I love that he is thoughtful, but I also like that it's clear his coping mechanisms are maturing.
When I get stressed, I clean. It gives me a sense of control. My surroundings have to be predictable because I feel like everything else is chaos.
J does this too. I'm sure it isn't all stress, because J does a lot around the house as it is, but he was running around like superhuman while I was laid up. The house was clean when I came home even both X and Lex had been here for days. Laundry is done. Grocery shopping is done. He's coaching soccer, organizing practices, bonding with x while I rest, and running the kids around while I sleep to games, movies, and birthday parties. He is impressive.
Again, I get to come out of my fight knowing I'm a lucky girl.

Victor(ious) Update

Hi Too all

Good news, Hillary's nodes looks to be smaller with 1 dose of chemo!! She also lost 12 pounds in a week!!

Hillary and all of us have had a terrible week. She had chemo 11 days ago. She had been feeling very good and had even been able to walk 2 miles before that!!   The next  day she had the relay for life and  had to stop  3 times to complete her survivors lap, maybe 100 yards.  The chemo was supposed to be the type that she had tolerated the easiest in the past. That didn't happen. The way I understand it is that the chemo will attach the cancer cells. Hodgkin's disease is a blood born cancer and it attacked her whole body. She was in so much pain that large doses of Morphine would not stop the pain. She was in the hospital on Monday and Tuesday just to get pain meds and get the pain under control. Wednesday she was admitted. She had at least 300mg of morphine before I lost count. We were even more scared when the doctor asked if she had advanced directives if she had to be resuscitated. Hillary had all that taken care of a while ago. Nancy was asked twice more on Thursday!! Hillary was on so much pain medication and still in pain that she cannot remember  anything from Tuesday to Sunday. The reason we know the node shrunk is because as they were looking for the cause of the pain. They did x rays and a cat scan. They tried many other high powered pain killers that would have put the best of us lights out. Finally on Saturday we saw signs of improvement. Sunday she was released. Today she coached Xanders soccer game!! She beat the odds again. Although Xander lost the first game of the season I think just seeing Hillary up and about made it a winning day for me.

So this Thursday she is supposed to do another dose of Chemo. I don't know what will happen. It may be another type of chemo, wait for a while, or see how effective the first dose was and not do another for a while. Hillary's choice will be a tough one. We all hate to see her is so much pain.

Well she has lived to see another day. She never ceases to amaze us. When you are in pain you begin to question if it is worth it. Luckily good medication can make you forget. But not for us watching. I hope I don't have to see that again.

Thanks for all the prayers and support. We are lucky to have such a strong support team.

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

With mom's assistance, I'm posting.
The cup full of water that drowned my phone the evening before my admission killed it.
I had no means of connecting with the outside world.
No worries.
I'm pretty sure it spared some of you those "I love you" phone calls I used to send out during my first transplant.
Not that I could dial.
First things first, happy birthday Mom Ford.
Happy Birthday Doc.

My brain was mush.
Drugs are bad, kids, very, very bad.
They're great when used properly.
I think the vacation to DC then the vinblastine and then me refusing to take more than a day of rest did me in.
I started with mucositis.
When Dr. G asked me what the worst part of my first transplant was, since I'd had every side effect imaginable, I could easily say mucositis.
This isn't a couple ulcers in your mouth.
It's not an ache and pain.
It's ulcerations and burning that extends your entire GI tract. I wouldn't wish it on the devil.
Most of this suffering I wouldn't wish on anyone.
Mon. I thought I'd tough out and go to my brain storming session for the Electronic Medical Records.
I was ain the car with my grandparents, we dropped X off at mom-in-laws. Suddenly I knew I wasn't going.
I called my NP for fluids.
I couldn't eat. The next day I called for more. Weds. it was clear I couldn't control the pain. I couldn't eat. I couldn't drink. I finally broke the 150lbs mark, clocking out at 146 this am.
How's that for a crash diet. Now I'm home, recovering slowly.
Thanks for the blessings.

Healing Slowly

I'm sick in the hospital with mucositis. The cat spiiled water one my purse which had my phone in it. Guess who has been in the hospital too sick and tired to talk on her broken phone.  I've been resting with lots of visitors.  I decided I would be stayng here until it's safe for me to go home.