chemotherapy day 2

Chemotherapy day 2...seems an old hat by now

Everything went pretty smoothly. I didn't have a reaction this time, which was nice, I was a lot more calm and relaxed. The bendryl (they give you this every time before your treatment to try to stop an allergic reaction before it occurs) REALLY knocked me out. SO drugged I could not even open my eyes. Oy.

Couture Fashion for a Cure Found...have you heard of us yet? The Lady Team has 35 more days left until our 2nd annual fashion show to raise money for the Cystic Fibrosis Foundation, and funds for a CF patient going through transplant and raise awareness and stamp out the myths associated with Organ Donation! www.CFforCF.com

We've been working on the fashion show like CRAZY baby. The Lady Team + Nik had a HUGE meeting with everyone involved monday evening (yes after chemo day..I was tired).

It was crazy nuts to see how hard these women + man (all under the age of 25) were working to get this show ready for Thursday August 25th, 2011. If you have not checked out our website yet here it is www.CFforCF.com. It is a wicked website, and I'm so proud to be one of the independent fashion houses in the show, as well as one of the Lady Team members.

2010 CF for CF fashion show women

Why should you come to the fashion show? 

a. it's a GREAT cause
b. you get to come to an evening of entertainment with female AND male models
c. there will be 6 local fashion houses and 2 independent designers featured in the show
d. You've Got Hattitude Jewellery will have a display set up and be for sale the night of the fashion show with a percentage of proceeds being donated to Cystic Fibrosis Canada
e. the venue is overlooking a stunning glass lake with over 60 acres of property
f. complimentary hors D'oeuvres and signature cocktails
g. red carpet
h. 300 raffle prizes
i. swag bags
....theres more, but we gotta leave something for a surprise the night of! ...it's only 45 minutes north west of toronto!

We raised over $30,000 last year and had a sold out audience!

Have you bought your tickets yet? 

You can get them from any of the models, or the executive team. 

They also have them for sale at the Orangeville and Bolton Scotia Banks, where they are matching the sales dollar for dollar. 

If you can't get to any of these places you can also buy them online www.ticketpicket.com/cfforcf

also if none of those above things entice you to come to the fashion show, here's a little video of "our summer" last year that we showed at the fashion show (expect some definite awesome videos again this year) 

biking

a couple days ago I picked up the new caledon trails biking brochure...who does that? ....not me a year ago!

Thanks donor for my new found love of being active and doing things!

mission to find a bike, still continues.... garage sale hunting this weekend

chemotherapy day #1

Today I had chemo at 8 30am. I've been pretty okay with the whole "chemotherapy" thing, and feeling pretty confident about the whole ordeal. I've been feeling fantastic the last week and would never guess I had a mass growing in my neck....until I walked in to the chemo day unit waiting area. If you need to somber up...oy, look no further. That is one place that reeked of death....it can wipe a smile off your face for an overwhelming moment, until you look in to the other people's eyes and hear them laugh, see them smile, and then everything is okay again, and you walk up to the front desk, and check in.

Since it was my first dose, I got my own private room. They had to monitor me extremely closely for the first hour to make sure I did not have an allergic reaction, which we gazed from the nurse, was fairly common.

I was about an hour and a half in, and everything seemed to be going well, just SO sleepy from the benedryl pre concoction they give you....I woke up from a napping doze, and my ears felt real itchy, and my throat did too...then my throat started to get a lump in it, and hurt whenever I swallowed. Panic. Panic. Panic.

This may in fact be the beginnings of an allergic reaction? I may have just pumped in to my veins, REAL close to the heart, through my picc line, a drug that I am allergic to, a drug that is killing my good cells as well as the "cancerous" ones, bit by bit, slowly by slowly, one cell at a time...all this runs through my head. So of course...I have a panic attack and now my chest is heavy, and breathing laboured...oh and blood pressure quite high.

Within in 44 seconds I had a whole bag of benedryl zoomed in to me (boy did that make me feel pretty funny in the head) then they gave me a 100 mgs of steriod IV. Slowly the world re focused, the itchyness subsided and we could begin the chemo ALL OVER AGAIN! That was a bag of fun.
Today we spent 8 hours in the hospital. Gross? Oui. Thanks papa for the company. Mama D-stan is sick...so she's "getting better" more like taking a vacation (kidding) at the cottage to keep her germs away from me!

But the good news is, it wasn't horrendous. I never felt any side effects really. I was still hungry for my lunch, and my snack (oh I did dip low to 2.7mmol!! ah! so watch out when they give you a new drug) I never felt nauseous or anything. I am tired tonight from the long day in the city, but really other then that, chemo...shmemo...nemo? easy peasy lemon squeezy. we can do it. (I hope I am not jinxing myself)
Sometimes I feel weird thinking that some ravenous wolf like drug is scouring through my veins looking to kill off all the good cells in my body. I don't like thinking about that to much.

I am done the treatment August 2nd. The next dose is next monday. So here's to hoping everything just keeps tickin' and tootin' along.

I rejuvenated my soul this weekend at the cottage.

clearly I have a thing for big hats...in a name eh?  

Every summer is it such a thrill to see the cottage fridge contents. I don't know what it is...but I'm telling you the ketchup on your burgers up there is different then down here! 

Here are a few things I will list that I love most about going up to the cottage for the first time

discovering what jewellery you left up there over the winter and years of being a cottager

Rekindling your love for archie comics even though you have re read the same comic strip a thousand times

friendship bracelet string box...key to an afternoon of making bracelets on the beach

seeing your dad who works SO hard relax, daydream, stare at the lake, and finally be at peace

margaritas! I make a mean summer margarita

Here are things I like about this year going up to the cottage: 

Packing...I pack and can carry two three four give me more bags at a time

moving the outdoor furniture without getting out of breath

being down at the beach and I forgot something... no big D...I'll just run up to the cottage and get it (before I would either a. hold it b. go thirsty or c. tell my guest to go get it themselves! ha)

The endless possibility that the summer holds because I can breathe now? Thank you donor. You have given me such a wonderful, wonderful gift. I can't help but smile even when things are not going 'according to plan' but I am still smiling...because doing all this is so much better and so worth it when you inhale deep in to your lungs and blow it out, and then...do it all over again, and again and again.....and again. 

we are women. hear us roar.

This weekend I was the one up and at em, strolling around, restless, I did not want to sit in the sand. I wanted to keep moving and playing. 

laughter.

director

I feel like such a different person sometimes with these new lungs. 

cousins

the best part about cottage friends...they go home when the sun goes down! ha

me. the lake water was like a bath. so warm. 

My next mission is to find a bike, preferably 2 bikes that someone would like to donate to the "get hattie to the ice cream store without a car and using her new lungs" cause.

I am going to spray paint them and deck them out in Hattitude attire. I will even take broken unloved bikes. All are welcome!

I have an appt with the lung team wednesday, then hightailing it up to the cottage till I do another round of chemo next monday. See you at the beach ;)

oncologist

This is a lot of information, and I'm kind of just jotting down notes for myself, explaining it all out for others so I don't have to re-hash everything. If you feel like skipping to the end to the: make you feel good you can breathe stuff, skim on down, sweet chikitas, bananas of mine!

Okay. so I am a lot more confident today. I'm exhausted. Absolutely exhausted, but I'm pretty sure I'm gonna be just dandy.

I saw the oncologist at PMH today. He is a lovely man, the team is lovely. He squeezed my case in this morning, even though I have been in contact with him for 5 days. So they had the whole number of team at the hospital working closely on my case today: How peculiar it is, the position the mass is in, how particular the position is close to the nerves, artery etc to the brain....and they came up with a plan and I like it.
They also had the pathologist in the room who studied the biopsy results. Because the mass/tumour is not huge and the spot it is located in, it was hard to get a good sample from the biopsy. Meaning they are still NOT sure whether it is all polly cells, or whether there are some monomorphic cells mixed in as well leading to full on lymphoma cancer.

SO the things they do know. It is PTLD. They need to treat it, and another biopsy or surgery is not going to show the whole mass of cells. My symptoms for the past 2 months, debilitating headaches, neck pains, morphine needed for pain, they said they need to be more aggressive, they don't want to take a chance because of the location of the tumour in my head.


Monday I start a light chemotherapy, no hair loss (good I just got my locks back! thumbs up) not too crazy side effects, nothing that I'm not used to, bruising, lower immune system (stay away if your sick please!), some nauseousness, although they said chemotherapy is MUCH better then what they used to have. So really they are more just concerned with my new lungs and getting infections and watching those closely while I'm on the chemo. I just have to go in once a week every monday, for four doses (is it weird that I wrote 'I just have to' talking about chemo therapy as if 'I just have to run out to the store for some dental floss, be right back'...oy!).

So yeah... some chemotherapy for a month, then this bad ass tumour will liquify away. I'll have august to enjoy, (start my speech for the fashion show, find my dress, get my nails all did ha) and get back at life!

I feel much more confident with this decision. I like the team. I trust my transplant doctor who is ALL over the ball. He walked over to MS hospital today to get me an appointment tomorrow morning with a skull/cranium specialist to do another biopsy for fungus (a very dangerous thing for TX patients to have) in my sinuses, to look over my MRI of my head at this abscess this see that may have to be drained before  I start chemotherapy to make sure I am totally infection free. This doctor calls me today and says "Hey Hattie, just your every day phone call from me, telling you what's up" umm...melt? Love him. What a lovely man. Very confident in the care he is giving me and working with my oncologist doctor my infectious disease doctor, my haematologist doctor (guys you need advice on different types of doctors, I got recommendations coming out my bee hind!) and everyone else. Great communication I feel. 

After this appointment tomorrow I will have officially been to EVERY hospital in the downtown core. Imaginary hat, Imaginary bow.
Tour guide? You need it. I got it.

On another note. Tomorrow I drop from 100mgs at 5 days, back to 7.5mgs of prednisone, my lovely regular dosage of steroid. No more Jekyll and Hyde action going on. Brain rest easy. It'll be out of your body soon!

Not to thrilled with the biopsy tomorrow...the last one has left me VERY traumatized, but my Lung Dr. said he talked to the skull Dr and he is confident he can freeze me and give me a much better biopsy experience (well numero uno...they didn't even freeze me last time, even though I asked, so it's already looking up!)
The cranium/skull dr. is a staff resident he knows how apprehensive I am about this biopsy. This is the biopsy that I got done as my mother starts crying in the hallway as she hears me screaming,with these new power lungs, in agony and pain as a RESIDENT, (I know right that was my first mistake letting a resident do the biopsy) rips a chunk of skin off the tumour. aye yai yai. Anyways, so tomorrow will be dandy. And everything will be finally figured out. I head up to the cottage on Friday. ice cream cones. sticky fingers. sand between your toes. sun kissed faces. races in bare feet. drip drizzle sand castles. bonfire smores. ahh. heaven. 


They say the first year is the hardest. And PTLD just got slipped in before my one year lungiversary. Never the less. I had an amazing time in the park, walking around the city, going out for dinner, and spending it with some of the people I love! Such positive thought and energy going on. It was great! Here are a few photos.  

summer colours are rad

friends that warm my heart

yeah...I can ride bikes NOW. no big deal. LOVING it. thanks donor JD

my jenos

swins. stuffing faces with sushi. (vegetarian for me of course ;)

oldest friend I know. QM. What a gem in a sparkle. 

lungiversary tomorrow

alright my little hunneeeaay sistas (as swin would say) and dudes... Tonight at 1 in the morning last year you may have woken up to a phone call (oh Lind you lucky thing, you! hahah) or a text message saying something along the lines "they are here, they are here, my lungs are here! Pray it's not a false alarm".  Or if your my cousin at 11:10 she says she got this message from me "It is getting so hard...they are having a dry spell of lungs" later that same night, I sent her at 1:42 this message "They called me!!! Lungs are Here!!!"

I was woken up by my nurse Karen with crackles in my chest, larboard breathing, puffy face, swollen feet, weak muscles, oxygen tubes wrapped around my body, dry parched nose, head a fuzzle, mucus pouring out of my old diseased and ready to be done with this world lungs. Man if you read back on the sunday journal scribbles in my doodle book, before my I got the "call" I really didn't know how much longer I was gonna make it. I didn't think I would make it to the next weekend. I could not breathe. I was drowning. 

So tonight and tomorrow, someone is going to be grieving their loved one to the bottom of their hearts, because how could they not? Who ever was my donor JD, John Doe, had to be a pretty fabulous person. One of the best calibers, the best of the best types.  JD saved my life. Physically I was a goner this time last year.

This battle is different so far, this is SO much more an emotional battle, then physical. I know right, you didn't think it could be more emotional then a double lung transplant? but I guess the combo of the two takes the icing on the cake!

I walk and I walk, and I breathe and I breathe and I still dance.

I put on music today. Yes alas, that is what was missing and making me all so gloom and doom. How could I have been so silly as to go 5 days without feeding my soul with some music? Such a silly goon I am.

SO tomorrow I am walking around this beautiful modern scientific city of mine, that gave me life, breathed me new lungs. This city that ponders me, this city that astounds me and allows me to walk and walk and walk. I'll be at the park. We're playing frisbee, eating yogurt (obviously), soaking in the sun, breathing in the air, and saying a little a big thank you to donor JD's family.

Also side note, CT scan, came back negative on the PTLD in my stomach, GI tract...sooo all goes well hopefully it's the just the one mass in the neck.

Also I got my toes painted today (Thanks JM) so I'm kind of ready for the beach, racing to the ice cream store barefoot in the sand? yes please. And there is a rumour floating around I get released from this hospital tomorrow. So here's hoping. It's gonna be okay. And if not...hey we still got the music.

a day to remember...i'm just a kid

My doctor has been telling me since June, "But hattie you're just a baby. You're just a kid. Let's get you out of here kiddo." to which I always think...I know I'm just a baby...I'm only 23. Please fix me. 

So today....I was just a kid.

this is my best bud Ian. He forgot his fishing rod at home

stuff we bought. success

buds.
the sun is shining...must be a good healing sign?

This is my friend Ian. He LOVES the bugs...also note the pro organ donor ribbon. Thumbs up.

thug

If you ever get told you have a type of "cancer", a mass thats growing...If you've grown up with cystic fibrosis, had a double lung transplant and feel more comfortable stumbling into a medical conference then a grade 8 french class all before you turn 25 years old...then you know a little about what I'm talkin' about? Enough is enough already? Let me live. Please.

Sometimes you just need a day walking around the city with your buddy, eating yogurt, people and dog watching in the park to remember I'm just a kid.

So today was a day just to store away in my memory box, when times get hard. Today was a day to remember...I'm just a kid. All this stuff is just one part of me...I'm still just a kid...lookin' for a swing in the park.

be careful what you wish for....

Sometimes this is how I feel...why me?.... Really? ...Didn't I already go through a tragedy? (maybe getting a double lung transplant does not count?) And it's not like I even got to enjoy the whole year of this new life...it took me 6 months to truly begin to live. 6 months after transplant I was still workin' my butt off in rehab, etc.

Did I do something that horrible in my last life? Or am I being punished for that time when I was 12 years old and told a boy who walked into the girls washroom "oh this is the girls washroom" not realizing, he was actually a she (yes I still feel bad about that) sigh....

Someone told me "you know what Hattie, if it wasn't PTLD...it woulda been something else...SO here's hoping the tumour shrinks with just the steroids" ....true that, KA. (it's good thing your best friends have your back and can see the reason through the horror)

I know I have to stay positive and not think so blah....but hey I just got the blow on Thursday, so give me a little while to digest, no? Especially since they faked me out with the "untrue" biopsy results and I thought I was home free.

The key here is to distract the bananas out of myself. 

Because sometimes I just randomly cry. It just starts slipping down my face, in the most random of places and it's embarrassing and sometimes it just has to overflow from my eyes and leak, If I get too overwhelmed and start thinking to far beyond tomorrow. So it will be my one and only post (I hope) of glumness. Have to stay positive. It's one of the only things I can do.

We were talking about living back in the city tonight (we gave up the condo June 30th, I know right, what bollocks luck!)...did I wish to hard? to be in the city for the summer? Ha now we have to find a new place, because I'm "sick" again in the hospital...Lesson heard, and learned...Be careful what you wish for? 


At least this year, I walk and walk and walk, and breathe and breathe and breathe. J, told me "you know what...no matter what they throw at us...at least we are breathing." Boy... what a high price we pay for breath eh? Every single person is so gosh darn lucky to be breathing, to be getting older. To be living. We are fighting glitches every day. It was okay when it was just tiny little bumps in the road...but this seems like a mother effin', HUGE, almost at sometimes too hard to imagine, road block, kind of need super powers to fly over it! (Don't worry I have always wanted to learn to fly, So i'm sure I'll get my wings somewhere and make it over this road block, see positive thoughts, positive thoughts)


The doctors sure did a GREAT job on keeping my lungs good though (maybe a little too good since PTLD is caused by an over suppressed immune system, I've always been really sensitive to drugs, maybe that will prove to be a good thing for the drugs to get rid of PTLD)...It's just such a shame I was EBV negative and CMV negative, yet my donor was EBV and CMV positive (meaning when he <I still think it was a male donor> came in my body he gave me both viruses, and they started wreaking havoc on me)...If I had of known all these bad things would have happened to me, I might have held off for a more perfect match of lungs...but thinking back I guess I did not have more time to hold on to.

SO c'est la vie. The price I paid for breathing and living. Worth it? I know you might think I'm crazy...but yeah...It was worth it...and still is.

Selfish that I love living too much? That I put my family and friends through so much! hell I'm not even one year out (that's on Tuesday July 5th, one year lungiversary) I dunno I guess I just like living, talking, laughing, breathing and dancing too much?
Sorry folks, but you'll just have to put up with me a little bit longer...I'm not ready to go yet.

And mama d-stan...Ah mama d-stan, the "pillar for our family". A stranger told us the day I got hosptailized and it was her birthday, without even knowing who she was, he found out it was her birthday and said, "you go out for dinner, you deserve it, you work hard all year, your the pillar and rock for your family" understatment of the year...why was this strange man saying this to my mom? That's not something a stranger in the elevator who over hears a birthday conversation says to someone! He even looked like a guardian angel. So here's hoping that was a good omen. Mama D-stan Sorry for being who I chose to be my stress ball this week. I've never been too good with saying words out loud (even though I was in the drama progam at mayfield, I never tried out or wanted to be in a single play, and do not like giving speeches, etc. I think I sound weird or something, but I like to write) so here is my apology to my mom, for having to be my stress ball this week, and feel the wrath of HIGH,INSANE doses of prednisone steroid. (sorry friend Ian for getting it tomorrow ha, kidding i'll take it easy on you) mama I love ya. And I'm sorry I'm sick again. I promise next year I won't get hospitalized on your birthday! (every year, every gosh darn year. aye yai yai!)

i gotz the PTLD afterall....

soooo.....here's the thing...maybe scrap that last post...turns out the biopsy results showed that I have PTLD after all...Post transplant lymphoproliferactive disorder. Ya...I know right. sigh...sacre bleu...i don't really know what to say...since it SUCKS so much that's not even a good enough word to describe it

so i'm in the hopsital right now, my mass or 'tumour' has grown and it's pushing up against my main cathartic (?) artery and touching all the nerves to my brain, so kind of in a serious spot. so they might start "soft chemotherapy" if this high dosage of prednisone (i'm on 100mg's of steriod a day compared to 7.5mg...yes i feel incredibly messed up) the biopsy came back a little wonky as they are not sure out of the three stages before lymphoma which the tumour cells are. 

PTLD is unique from "normal lymphoma" I think, since it is caused by me being so immunosupressed. So it looks like all the cells are just pollymorphic, which is the two stages before full on lymphoma and so hopefully the steriod can just shrink the tumour and do it's work and we back off on the immunosuppressants. 

Problem is they thought they saw some monomorphic cells which are group of cells starting to become actual lymphoma, so they also might have to do some "light chemo". But they don't want to do chemo becase obviously chemo wipes out your whole immune system and then I might be royally screwed with these new lungs. soooo it's a whole waiting game now. I hope these steriods work. so far this morning i woke up for the first time pain free in 8 weeks in my neck and head. so hopefully it shrank it a little already!? or at least helped my sinititus.

dr. said it could get better (the polly cells shrinking) but then get worse if there is mono cells, which would reproduce fast to create lymphoma....

so thats whats going on here. kind of a bummer. a real friggin' bummer. 

i almost feel like this is worse then getting a transplant...at least with a transplant you could do stuff, and help yourself...with this...it's just waiting to see if I will respond to treatment. blargh. 

it's probably been one of the worst days of my life...(and i've had some crummy ones) but this thursday topped them all after my MRI results came back and these words were thrown around "tumour" "growing" "more cells" "dangerous location" "more aggressive treatment" I think thats when I decided to check out and overdose on ativan, T'3's, a morphine pill and then to kick it all off, asked for a morphine drip on IV. Friends don't do that....the after effect is horrible the next day and it has your mother freaking out as she comes in to your room while you can't hold your eyes open, your throwing up and are the groggiest, out of it, state of mind EVER. 

Immediate freak out by one mama d-stan. 

I'm feeling a LOT better today though. First time I woke up in 8 weeks without pain in my neck or head. So maybe the steroids helped with the sinititus or fingers crossed and toes, and prayers and energy and everything else, maybe by some miracle it began to shrink the 'tumour' already?

I also JUST got net flix. hello blogosphere friends why did no one tell me about this before for hospital admissions. Watching on your computer AND first month free trial? yes please. it's amazing so far. Fantastic Mr. Fox....is actually fantastic! 


here's me dreaming of where I should be this lovely long weekend...at the beach...! sacre bleu

photo taken two weeks ago at cottage