New Year

Been a while folks. Again, I'm sorry. But generally the less I write, the better I am!

2011 was pretty much the worst year of my life. I'm so ready to start fresh. Sometimes I try to forget but other times I feel like it's a pretty important part of the story, so I'm kind of back and fourth as to whether I'm forgetting or moving on but not letting go.

I'm full of resolutions this year.

Number 1 - Spend more one-on-one time with each of my girls. I want to make up for lost time or any damage that was done while I was sick. Yeah yeah I know, it wasn't my fault, but I feel like there's some work to be done. Some repairs, almost.

Number 2 - Take better care of myself. Eat well, and start up with my new personal trainer Phil (https://www.facebook.com/pages/Green-Fitness-Training/182994785049263#!/pages/Green-Fitness-Training/182994785049263?sk=wall) <-- check it.

Number 3 - maintain a clean home, HA!

As soon as I can get a hold on life a bit, having my new job, doctors appointments, June in school etc. I hope to start volunteering at the General at the Cancer Centre. I think it's pretty important that I do what I can to help other people out who are experiencing what I experienced. It's kind of helpful when you're dealing with people who actually understand exactly what you're going through emotionally and physically.

This year we had an amazing Christmas. Again, we overdid it for gifts. The girls had 20 each and then a giant one together. I don't even want to tell you how much we spent when all was said and done. It's actually gross. ESPECIALLY since after about 3 gifts each, they didn't want to open anymore. Lesson learned. I kept thinking I was so grateful to be able to be here this year. Last year I was so afraid would be my last Christmas with my family, that it made this year so amazing. We started what I hope will be a new tradition this year, and went to see a movie on Christmas day. The kids were crazy for it and we brought blankets to keep cozy while we watched. It was really a great time.

Alrighty well that's that for my last post of 2011. I hope everybody has a great new year full of health and happiness because not much else matters when it comes down to it.

Lots of love, see you in 2012! BYEAH!

(Here's a picture of June this Christmas in her new Spiderman outfit she got for her birthday on the 23rd. Oh, did I mention she wore it to school that day? Mask included)

I've been feeling pretty bummed out lately. Could be hormones (YES! I'm officially fertile again), could be tiredness from taking on a lot of stuff. But mostly I just can't help but to look at the calendar and at the different days that last year I was finding out I had cancer or the week I went off the deep end. I have had this ball in my chest and weight in my stomach, it feels the same as I felt this time last year. Officially confirmed that I had stage 3 cancer, but too soon to have learned that there was any chance it was going to be OK.

It's so tricky. You want time to pass so it can go away and you can try to forget it, but at the same time it's a part of you and defines you. It's strange to have pride and to want to erase the thing that gave it to you all at once.

I haven't been to physio since June started school. Things have gotten so hectic in my head that I can't keep up with anything. Having June in school half days, Ian traveling off and on and starting a new part time job of my own makes for tricky scheduling, so I just haven't bothered. The pain gets so intense and sharp. My muscles are so tight that you can see them under the skin. Here, I took a picture of my inner elbow












You should see my armpit. It's hardly even a hole, it looks backwards.

Anyway whine whine whine. I'm hoping to do something positive with this. I want to get involved in some way with young women who have it. I think I'm outgoing enough to really get out there and do something. I'll keep you posted on what the eff I do, cause at this point I'm still unsure how I can help...

tata
J

It really warms my heart when I see people who are running/walking to raise money for breast cancer in my name. I feel so supported and it just floors me every time. So amazing.

I've been continuing Herceptin treatments, and will be until February. I had it today, actually. Not a bad time, didn't have to wait too long and it wasn't a very hectic day there which was nice. I kind of have a good time when I'm there. I'm able to text and listen to my iPod without having to do any mommy things. A nice little break (minus the needles and tubes and junk).


Photo in the bathroom at chemo











I went to Kelly's mastectomy boutique this month, got me a little chicken cutlet action! The prosthesis is squishy and peach and even has a little nipple. They sell bras that have a little slot to fit it into and it actually hugs the skin really tightly so that it appears like an actual boob. It's nice to be able to put clothes on and have them stay straight and not falling down on one side. I feel like a lady. They make swimsuits and fancy lingerie too, so it made me feel good that I can go to the beach and not feel embarrassed by my concave cereal bowl of a chest! The woman who helped me was really wonderful and I felt totally comfortable with her, and that really helped... I had been worried about the whole idea of it for some reason.


Chicken cutlet! Oh no wait that's my fake boob











I guess that's it for now. Time to get some dinner together.
Until next time

It's Been A While

You know, every time I go to write a new entry, I end up just feeling lost and like anything I could say isn't really worth the read.

It's become a little bit hard to reflect on anything... maybe I'm going through those stages. But it's almost like you put your head down and push yourself through all the ridiculous shit and then at the end, you look back and fall apart. I don't feel like a brave person at all. I feel like a little wimp!

There's so much that I don't want to remember but that is stuck in there for whenever cancer comes up in my head. Like how in the beginning, when they tell you you have it, the first thing you think of is that you are going to die. I didn't want to leave my children or Ian, and all I could do was imagine how hard it would make their lives to not have me to take care of them. I used to sit up at night and write journal entries for each one of them to have after I was gone. I've never told anyone that before. And I feel weird looking for them to delete them, but then I can't even open it up cause it makes me feel like barfing.

For such a long time after I had my surgery and treatments, all I worried about was being hit by lightning or a bus and losing my chance at life despite everything I had been through. It's pretty hard not to obsess about but I hear it's common.

It's a part of you as much as anything else in your life, so wanting to forget about it sort of makes me feel guilty. Like I should own it and be little miss brave pants. Almost like when I think about getting big fake boobs so that clothes don't make me look like a little boy. Should I be able to own that and be proud of it rather than covering it up with falsies? I have a whiteboard in my kitchen and whenever I have a day where I think I know what I want, I write the date and then "yes boobies" or "no boobies".

Guess it's all part of the process.

My hair has gotten pretty long. I don't think I look sick anymore (although a crazy nurse asked me straight up if I was sick and it reeeeeally hurt my feelings). My skin has mostly rejuvenated from the burns but it is a bit spotty.... want to see? Hang on...













My June started kindergarten and I am the volunteer coordinator for her class. It's awesome to be involved like this, I'll have to update you on how that goes, I haven't been in just yet.

Alright I'm done here. I'm over this post! Time to go make lunch for these animals.

dingaling

Radiation finished up on the 4th of August. I got to ring a bell like at the end of chemo, but to be honest it doesn't feel like half the accomplishment that chemo was. Yeowza. Still, I gave it a ringle dingle to wrap it up.







My skin got pretty red after the 5 weeks and in the last few days has gotten significantly worse. It has started to peel off layers and layers. It is very red and tender and there are some open wounds on it. I'm having a hard time moving my arm at all because of how tender it is under my arm. I get lots of stabbing and sharp pains very deep in the tissue all over. Dr Caudrelier said my effects would worsen in the following couple weeks but then would begin to die down. I'm looking forward to that.



My hair is thick and the colour is a different brown. It's feeling really damaged, but maybe it's cause of the thickness or all the different lengths. Not too sure, but who cares? I'm no bald!
I'm continuing herceptin treatments and about to start a pill called Tomoxifen, tomorrow morning is my first day. It's job is to block estrogen (i was estrogen receptor positive, and her2 AND progesterone) for the next 5 years. Same old effects, tiredness and nausea. Bring it, I'm a pro now, right?

That's all for now. I'll try to write more often, but the less I write these days, the better and busier I am!

nails

Here's what happens to your nails when you receive chemo (or when I do, anyway)

Started radiation on Monday. It's strange, you can't feel it or see it, pretty tricky stuff. I go in every day for 5 weeks - weekends off though. So far I've always had the same two dudes, Phil and Justin. A little awkward because I have to lay on this sheet on a table topless with one of them on either side of me. I have to stay completely still and they adjust me by pulling on the sheets underneath me or just moving my body however they can to match up these little tattoos of dots I got a couple weeks back. After everything is straight, they leave the room and this machine moves around me and gives off the radiation. It makes a bit of a buzzing sound when it's on, but that's the only way I know it's actually happening. I've asked them a few times, are you sure this thing is on?! But now my skin is starting to get red and my throat is getting sore so I guess that it's starting to happen.

My hair is getting pretty long and thickening up. Eyebrows and eyelashes are still another story but I'm told they grow way slower. Total drag though.












June asked me to do her makeup on Monday. She did mine first, so it was payback...

Post op (and photo progress)

Yesterday I went to visit my surgeon, Dr Watters for my post op appointment. I think it's been around 2 weeks now. My sister Trisha took me so poor Ian could nap and try to start catching up on some sleep.

Unfortunately, my dear Kelly wasn't there, but there was another nurse who was really amazing who helped us before we met the doctor. She removed the little tape strips that covered my incision. I was so afraid at first and asked her if I could do it myself in time when it started to come off on it's own from showering. She said it was totally fine. Then I said ok well wait, try one and we'll see how I do? (I had expected to turn white and pass out like when the home care nurse came to change my dressing) Having something pulled off of numb skin is the strangest, nauseating sensation I've ever felt. Anyways she went quick and I asked her to keep going until I couldn't handle it anymore. We did them all and I'm so glad I didn't have to do it myself, I have a bit of a hard time looking down there, I'm pretty squeamish.

I was shocked to see that the incision wasn't nearly as ugly or spooky as I'd imagined. They said I am healing very well and retaining a bit of fluid but that would be absorbed by my body over time.

Dr Watters sat us down to look over the pathology report. Nothing showed it my breast tissue but one of the lymph nodes did show some cancer that was .5mm on it. Based on this (and the fact that Ian would kill me if I didn't), I've decided to go ahead with the radiation. Dr Watters said it was good news, but I was really disappointed that after everything I'd been through, there was still cancer left. Ah well.

Here's my little progress report

and then there was one

i don't even know where to start on this one. it's been a while. i guess just surgery until now is all i need to talk about.

we got to the hospital on time, which was awesome, and the lady gave me a bracelet, had me change and then i sat in a room full of elderly people and waited for them to call my name. when they did, i was lead into this big long room full of stretchers with curtains on either side. the lady asked me all the same old questions about allergies and what meds im on and then gave me these stockings that keep the circulation good during surgery. they were flippin tight. they had little holes for my toes to pop out so they could check that circulation was good during surgery. so funny.

the nurse kind of sucked. she put my iv in and sent us on our way, ian had to say goodbye to me half way and was told to wait in some certain place but i trail off there because im so nervous.

the porter wheeled me into a little cubby across from the OR where they do anesthetics on you and met with some nice people who stuck about 6 needles in my spine to help numb my chest and then it gets weird, i remember laying back down and then when they asked if i was ready i said, "bring it on!" and they were like whoo hoo and then started wheeling me, i see the outside of the OR door and then it skips to im already laying on the operating table and there's a black mask being put on my face and then i wake up! I'm not sure where i only remember parts, maybe the stress knocked it out?

anyways waking up sucked. i threw up a lot and that was uncomfy because i couldn't run away like i usually do, and it was close quarters with ian and the nurse and myself in there. gross. it took a long time for me to stop being sleepy and feeling like i couldn't talk. i was in a room with 2 other women and sometimes their spouses so by day 2 i begged to go home and they let me.

today i had my drainage tube removed. i will not describe this. ever. i understand some of you may be looking for more feeling in this post but im gonna have to keep that part to myself for now as i work it on out.

here is a picture of my bandaged chest. too much? who knows, that's just me

bye bye boobie

dear goliath

you were always my favourite, because you're the bigger one
it will make me very sad to see you gone

paul will miss you too, of this i'm sure
he'll have no partner in crime, but this is my cure

i'm sorry i pierced you when i was 16
you did a great job, took one for the team

i really hate to lop you off, you've served me so well
in boobie heaven, there won't be an armpit next door with such a terrible smell

thank you for feeding my babies, even though they preferred paul
it's nothing personal, just a tumor, that's all

i'm happy im almost better, but sad to see you go, too
so this is goodbye my friend, i'm sorry we couldn't save you




(ps my boobs are named paul and goliath, that may help)

5 days...

So as some of you heard, I had one last appointment with my surgeon this past Tuesday, just to look over my MRI and ask any last minute questions I had. After he examined me, he told me my MRI had come back and shown no cancer! Pretty rad. I guess all that suffering paid off, but I still cringe at the thought of chemo.

Surgery is in 5 days. I'm so scared, and I can't keep it in. I try not to think about it but it always comes. I don't know what's worse... if I'm mostly afraid of waking up without a boob, or of going under and something going terribly wrong.... or the creepy spinal block they'll be putting in beforehand. All of it makes me terrified and I just want to fastforward to Tuesday night when I can say it's overwith and start to deal with this new chest of mine.

My hair is falling out. I'm pretty upset about it because it's been growing for about 3 months now and I thought it was at a weird stage BEFORE it was all sparse. See ya later, awesome progress. So embarrassing. I'm ready to be pretty again and have eyebrows and eyelashes and non-puffy eyes. Even if it was just that, I'd be happier, even with this stupid hair.

OK that's it for now. I may write again before surgery but probably not.

see you on the other siiiiiiiiiiiide

waited too long and now this is the longest post of all time

I feel like every time I write it's always waaah waaaaaah bad news. Not trying to be a negative Nancy, just giving out the info.

SO. Chemo was on the 20th, which was a Wednesday, by Friday, as always, I was back in the hospital. This time I was, how do I put this nicely?? Ummmm, when I went to the bathroom, not pee pee, there was lots and lots of blood instead of a number 2. Sorry.

Anyhoo this went on for several days, every 20-45 minutes. I was terrified. I left the hospital Saturday and had to go back Monday for pain. I couldn't stand, sit, speak, anything. I had started throwing up whenever I went to the bathroom as well and couldn't keep up with drinking because it usually came up. SO needless to say, anti nausea medication never stayed down for a second. It was bad. So bad that I even sent Ian home from the hospital because using energy to speak or even look at him made me so sick and sore and would lead to crying or other things that made me barf some more. And can i say it is very uncomfortable sharing a room with someone when you are both getting sick and needing the bathroom that often. Not a good sitch. They kept me on hydration and a liquid diet. I was worried about not eating but they said it was ok.

They let me out of the hospital I think it was the Wednesday or Thursday after. My stomach was sticking out so far that I looked 6 months pregnant, even my bellybutton had popped out.

When I got home, I went straight to bed. Kate was over watching the girls, as always, and I had her hide with them so I could sneak past because I was so sick. I stayed in bed overall for 17 days. Not a lot of talking, eating or eye opening for the first 2 weeks. Ian got really scared, and to be honest, I was really scared too. I couldn't move, but had to run to the bathroom at least every 2 hours. I needed dilaudid for the pain in my tummy. I never get sick in front of Ian but had no control and just hung out barfing in front of him like there was no tomorrow. And did I mention the diapers? It was hell. PS I think colitis is just inflammation of your intestines or bowels. I had a hot water bottle on the backside and a magic bag on the front and could only lay on my right side. It was bs. Eventually I started to feel a bit better and was able to swallow water and pills without having to be so careful. Then the nausea stopped and I started with apple sauce. I'm still not back to normal and it's been almost 20 days.

My energy is very low and for most of every day I am still in bed. I've also started having really terrible and constant hot and cold flashes where I soak my clothes and am incredibly uncomfortable and shivery. My body thinks that it is going into menopause because chemo is very hard on your ovaries. My nurse says that since I'm so young that in two months my period (sorry) will come back and all of this will stop.

I went yesterday (Rosie's birthday!) to get the results of my genetics test I told you about a while back. Turns out I magically don't have the gene mutation. I was so positive that I did, that I sat down and said to Erica, my geneticist, "I know it's positive, if you said negative I would honestly not believe you at this point so you can just skip having to say it altogether. I just have some questions concerning my daughters and what to do with surgery for the other breast and my ovaries" and to that she replied, "well then I've got some shocking news for you..." yeah I balled. Like a baby. I never cared about myself it was just the fact that my daughters would have such a high chance of getting it that I couldn't live with myself. So it was a great birthday because of that. And it will be a great week and month and year because of it too!

Surgery is the 24th of May. I'm scared but I just have to go with it. Ian just informed me that I'll be missing the great Glebe garage sale AGAIN. UGH. I haven't been in 3 years. So that's a bummer. But I hope to start getting energy soon so that going into surgery I actually feel good and can maybe even walk in and not be wheeled in.

Today is my first day going back to the chemo floor. I have to continue to go every 3 weeks until about a year from now to get a bag of herceptin to block dirty hormones that give me cancer. Trisha will be taking me so it's my first time without my Ian. But I'm kind of looking forward to having her there and having her see what I'm always talking about.

Ok I'm done. And I'm on Ian's computer so the fancy picture of the day is me immediately before shaving my head. nice.











UPDATE:



Here's my tummy after it started to go down. Pardon the diaper yo

Peace out, chemo

Although this morning is a pretty crappy one, I decided to try to bloggy blog while things are fresh in my mind.

Ian's birthday was a success. It was a lot like our wedding where there were sooo many people that we were separated all night, but that was ok, I really wanted him to get some attention. Cynthia remembered talking with me about a fancy necklace and she made it for me and brought it to the party, it's so pretty I'll have to take a picture. I don't know who had more fun, him or me, but it was very nice to get out.

I was a little bit under the weather the morning of chemo and being at the hospital for 8:30 blood work stung a bit. We stuck around because they always start late and chemo was an hour(ish) later. We sat in Tim Hortons and watched it rain (thanks for nothing, mother nature coulda used some sunshine on my last flippin day).

Chemo started at 12 instead of 10:30 because ... i don't know why, I was irritated. I kept welling up but at the same time I was so exhausted and on steroids and just messy from the night before so I'm sure that could have had something to do with it. By 12:45 Matty and Maria came to visit and brought me flowers! There's only 1 person allowed so Matt and Ian went to have some lunch together. Things ended really quickly so I texted Ian to come back upstairs so we could ring the bell.

I had been also waiting on an appointment for a cat scan of my lungs, my doctor is suspicious that I may have a blood clot and wanted to check it out asap. They ended up telling me to just come down as soon as chemo was finished up. So instead of balling my face off and being overwhelmed when I ran the bell, I was all business because I knew I couldn't fall apart when I had more appointments (especially the kind that makes me feel claustrophobic) . Kind of disappointing, I know, but we're never how we think we'll be, I guess. I felt silly and shy. Me. So I had Ian ring it with me and everybody clapped and we walked back by lots of people who congratulated us and it was nice.

Hopped into a wheelchair and went on our way to the cat scan. They gave me a very sore injection, my veins are just terrible from all the chemotherapy and then I went in. Same old, the dye went in and everything got dizzy and hot and so weird and right when you think you'll pass out, it starts to go down. She removed my iv after 10 min of waiting and then off we went to go home. 6 hours after we arrived. Ian pulled the car around because I was starting to get really weak, oh, and the rain too I bet.

Oh theeeeeeeen came the tears! I felt bad for Ian. How confusing girls must be. I'm just really shocked and proud and in disbelief that that just effing (I love you, Nan) happened to me. I understand that it's hard and things get bad for people going through this, but I can't explain to you just how bad. And I swear to you, I'm not a whiner. I was so afraid every time - well, from 4 through 7 at least - that I was going to die because all these stupid scary things kept going wrong. I spent way too much time in the hospital and away from my kids or up in my room away from my kids or on the couch too vacant to even answer my own kids properly when they asked me a question. And eventually, after being pumped with poison for this many months over and over, your brain stops working and you forget what it's like to be brave or happy. And then you feel like you're bad at this cause there are all these blogs and youtube videos and google pages that tell you in order to do well, you have to laugh and you have to push yourself. And on some days you can't and you feel like you're hurting yourself and letting everybody down, but you just can't pick yourself up. I didn't want anti depressants but for a long time I cried every day for one reason or another... the worst was how I felt, but a close second was this terrible symptom where I became so confused and cloudy. One day I was trying to count how many days had passed on my fingers and had to start over and over until Ian helped me. I would have important people over for BBQ's and avoid eye contact so they wouldn't talk to me because I had no idea what they were saying and couldn't keep up. If there were subtitles on the tv screen it would throw me right off because multitasking was just too much. And I couldn't talk, I always would forget what I was getting at or why I was talking in the first place. It was so hard to be stuck up in my brain and not able to communicate it at all.

Wah wah waaaah. It's so much easier to whine about when it's over. Not that it isn't about to start up just this ooone last time. But I say bring it. 4 weeks until surgery. I'll let you know how I feel about that one another day.

Thank you for listening. Also, you'll notice that posts that are directly after chemo are usually the emotional ones where I spill the beans. If you go back to my original posts you'll see that I tried to keep that side of things to myself. Really worked on the brave front, everybody thought I was a total hero! I'll read this in a couple days and be all shocked and insecure by what I said, but it's genuine and I'll roll with it.

Here's some pictures for you.

The first one is called "See you NEVER AGAIN you stupid mitts"
The second one is entitled "Look at me at my last chemo"
And the third "I'ma ring this bell"

updates

I'm so sorry I left the last post without writing again. I had written a huge post and it ended up getting lost in cyber space and I just got pissed off and said forget it.

My heart is apparently ok. The cardiologist was confused as to why I had those levels in my blood because all of my tests and scans came back saying I had a healthy heart.

My new problem (and I'm getting really sick of all this stuff on top of itself) is that I have a heavy weight on my chest and am unable to take a deep breath. I'm also finding I lose my breath a few times a day. I've had a bit of extra stress in my life the last week so I'm hoping that this is related to anxiety and that it isn't a new problem.

I'm very anxious about my next chemo. It will be my final session and I can't keep myself together about how proud I am of myself. This has been hell and I can't believe I survived it. I truly thought I was going to die over and over, as morbid and awful as that is to hear, it's 200% true. This has been so painful/nauseating/exhausting/emotional I just can't believe they put people through this. Mind you based on my age and that up until the cancer, I was an otherwise healthy lady, my doctor has given me the absolute maximum dose that can be given and 8 treatments as opposed to 4 or 6.

So there's this bell I get to ring to say I'm done. It's all I think about. I don't even know if I'll be able to do it, if you say "Wednesday" I'll ball my face off. I'll let you know how it goes. Ian wouldn't let me leave without doing it. And we'll be tired and sick as it is because the night before is his bday party! He's turning 30. I feel terrible that it was scheduled this way, we have to be at the hospital for bloodwork at 8:30am. Ouchie.

Ok that's it for now I think.

Here's a hair progress pic

oh hi

We had chemo on Wednesday and guess what? it's been rough. Every time it's something different though, so it keeps it so exciting!! (NOOOOT)

The day of chemo they took my blood pressure and pulse and said my heart rate was a little low at 60 when we started. Half way through it went down to 50 and by the end it was at 40. Chest pains kicked in and lasted a while. When I called my nurse she said go to emerg. Matty brought me in because Ian had to work and mom stayed with the girls. We hung out for quite a while in there. Evening to like 3am. Ouch sorry Matt.

the first doctor I saw was a bit concerned, he told me I had a little murmur which is no biggy and that my blood work came back and there's some level that starts with a t and if it's above 0.02 there's concern for heart attack, well mine was 0.04 and in another 2 hrs was 0.06. The Dr decided to have cardiologists come on down and see me but they take forever and his shift was over.

My new Dr says he's scratching the cardiologists (same pain, same slow heart rate beeping away around 40 all night) and that he wants to do the same blood test a third time... he walks in an hour later and says yeah you're young, I'm sure you're fine and that you want to go home. Matty looked at the paper and it was still 0.04 so I don't know what the frig that meant to this dude, but to me I was still freaked out.

I went home and had spooky chest and back pains all night and my heart stayed around 40 most of the time. I called my nurse again and she said Dr Song was ok with everything the other doctor said. But I've got this bad luck with weekends. It's like every time I have chemo, the weekend comes and I can't call the cancer center and then I get thrown in the hospital again. So I called again today, Friday, and was just real about my feelings. I also asked what meds to take or not take because they said in emerg that it could have been a number of my meds, so I've been sick and not taking anything. Dr Song phoned back and when she realized no cardiologist had seen me, she got a red flag. So she's sending me for an ecco (ultrasound of my heart) on the 11th and to meet with this cardiologist on Wednesday. Cool, see you then, and until then I'll be having chest pains and a slow heart rate? Wicked, not scary at all!

Bad stories lately, sorry. But I said I'd be real with updates and here they are. I had a nice visit with Matty in the hospital and he takes really good care of me all around, he also is the guy who shoots me with my Neupogen every flipping day because I'm too chicken. Kiki came over today as well and that was awesome cause I have no social life so she brought it to me!

the end. I'll update soon about hearts and hair!
J

hair update

starting to fill in mostly. some is longer and some is still stubble






1 week later

Hair

Did I mention earlier that it seems my hair may be growing back? I don't want to jinx it because I was told to expect the rest of my hair to fall out. Could be from the blood transfusion or something tricky and then just fall out but I figured I'd document it while I could.
It started coming in and I could just feel it really soft all over my head, but it was sparce still. Today more stubble is coming in where there was nothing

this is yesterday and today

Told you I'd be back.

This morning woke up with, well, the poo poo's. Common symptom of this type of chemo. So so awful. And intense nausea along with it. I've taken every nausea pill available to me and even Ativan. I'm on Imodium as well but the nurse said they would have to send home care to set me up on an iv to hydrate me for 3 days. So now I'm in bed waiting for them to call and come over.

What's up with this? There's always something new and so (not punny) shitty going on and I'm so over it. And I know I'm in for it when the pain from my Neupogen shots start. Somebody give me some good luck, this Thursday sucks! I'm under a dirty little cloud right now!

Whine whine whine

Justine aka Negative Nancy

genetics and chemo 6

So basically I'm being screened for a mutation in my brca1 and brca2 genes. They're suspicious that this would be why I developed breast cancer (could be breast ovarian or prostate with this type of mutation) at such an early age. It's pretty unheard of. I had the blood work done today and had about 9 viles taken. They are expediting it and it will still take about two months to process. Hopefully just in time for my mastectomy, because if I do have the mutated gene, I will be opting for a double mastectomy and then have lots of new things to consider : boobie implants, having my ovaries removed, the fact that my babies, sister and father will have up to 60% increased chance of developing one of these cancers and my girls will need to have mammograms and mri's from the age of 18. It was a lot to swallow. But the test is done and I feel good about it. Just knowing that I can help prevent these diseases in my family when we woudn't have otherwise known that it was sitting in them like that. This way, by knowing, we can catch it early and they won't have to go through what I'm going through. I hope so much that it comes back negative but they look at so many factors and put a bit of fear into me. At this point all we can do is wait. And I'm willing to let it slide off my back because my plate is pretty tiny and very very overflowing at this point.



I had chemo today. Number 6 of 8. I triple checked that my bloodwork came back ok before I sat down to have the chemo, they weren't making that mistake again! It took forever to even get in there, they seemed pretty rammed with patients. About an hour past my appointment time, I was sent to pod6 in a bed, which was nice because I was so tired (regardless of the stupid steroids I've been taking). Took about another half hour to get my chemo sent up from the pharmacy because they make it fresh while you're there. I guess it has a quick expiry. The first bag was an hour and a half, and I got to wear my fancy ice mitts and booties. Still not used to them, they're terrible! Next we had an hour and a half of Herceptin, the hormone block, and then half an hour where they watched me to make sure I didn't have any reactions.


Everybody was pretty rad today. I met a nice 69 year old woman in a fancy blonde wig who was facinated that I had nothing on my head. We chatted about cancer a bit and how it was her last session today. I told her I was so happy for her and that I hoped she'd ring the bell (THERE'S A BELL!) and that I'd be clapping for her the loudest. She was pretty awesome. Then Ian had to go grab some lunch and my prescription downstairs so the lady next door who was with her husband and knitting way better than i could dream of, she notices my mittens and that I'm texting with my nose again so she says honey if you need a drink or anything out of your coat, let me help you! She was probably 100. So great. I love how older people touch your leg all the time. So comforting. I ended up asking her to get my water for me because she kept checking over and over and genuinely wanted me to let her take care of me.... but by the time I did, it made me feel all warm and cozy.


My mom is here, sleeping on the couch. She bathed the girls with Ian and got them to bed before I even came upstairs from my own bath. That was really awesome and made me life 200% easier when I'm on these steroids freaking out about everything and really just starting to feel sick and out of it.


I'm afraid of how many days before the pain starts up again. Matty is coming tomorrow to give me my Neupogen shot and I know it's maybe a couple days after the first shot that it really starts to kick into gear. My Dr said that if worse comes to worse I'll just be hospitalized for pain every time which is a real drag, but also very comforting because no matter what pill they give me, my pain doesn't go away, seems it's just injections that work. I hate to be away from my babies but nobody deserves that kind of pain.

I think that's all for now. I'll give updates whenever changes come. Or maybe I'll be too damn busy, who knows?! So mysterious...

I don't want to jinx it, but I think my hair may be starting to grow back? It could still (and probably will) fall out from one or all of the next chemo's, but I still find it fascinating and can't find much info on it.
I reached up and rubbed my head yesterday and it felt fuzzier and today I went to Emily's and had her examine it and she said I had a 5 o'clock shadow up there. I'd be really excited to have even a little bit of hair this summer so my fingers are crossed - - but at the same time, what a bummer it will be to have to shave my armpits again. It's been 4 months!
Ok thats it

oh my

So this past weekend, I was experiencing some pretty intense pain. I had been prescribed Dilaudid (is that the right spelling? I don't know) but no matter how much I took, the pain wouldn't go down. I ended up pretty much rolling around in my bed all weekend or laying on the floor of the shower with only the hot on my back. The worst of it was I guess usually my hips and lower back and spine, but my ribs, thighs, calves, knees and upper arms were so so painful. Oh and my sternum really bad, too. I was cursing family day because it meant one more day without being able to call Dr Song to get a new drug or have her suggest I take more.
Monday night by 3am I was at an all time high for pain. Easily an 8 or 9 out of 10 - and I've had two children - so I got into the shower again to try to pass time without losing it. I was texting Ian at work a lot and started going a little nutters in my head. My pupils got really tiny and I was getting confused about what was happening and just simple things. I finally got myself out of the shower and into some towels and then into bed, which is where I became positive that I had a fever. I couldn't reach the thermometer because of the aches and how freezing I felt, so I waited for Ian to get home.


* * *
I wrote all of that a while ago, so much has happened. Anyways, long story short, I had a fever and we went to emerg at 3am, had blood work and lots of tests done and they say that i had low white counts and low hemoglobin and that they were looking for infection in my blood cultures so I'd have to be admitted. I waited 13 hrs in emerg and Ian had to leave before it was up because Rosie had an appointment for shots at 2pm the next day. In the meantime, they tried Percocet and more Dilaudid but the only time I actually came down from the pain enough to feel ok was when I got the pill and then an hour and a half later it wasn't working, got the shot of Dilaudid on top of it.
When I got to my room, I told the nurse this since I had just had a pill an hour and a half before and was ready for my "breakthrough" shot as well so I could sit comfy. She said no and then I was left for another good 4 hours in pain. I got pretty desperate and would ask anytime somebody came but they all just kept going to check and not coming back. It was bad because it was climbing and i couldn't handle it at all.
Finally I started buzzing over and over and saying I was going to burst out of the window soon and I needed help now and then shortly after my own Oncologist walked in to check on me. I told her what I'd had and that it had worked but that so far up here they wouldn't give it to be and now I had been waiting 5 hrs with nothing for pain. A nurse walked in right then and gave me a shot. Kind of lame but at that point I didnt care I just needed it one way or another. I explained that pills didn't work and Dr Song said we'd just do shots then and that I shouldn't be in any pain.

My fever finally started to break again and then I had this amazing night nurse, Judy, who tucked me in and just made me really happy and comfortable to be here. The gave the shots well and had a really gentle voice that just made you sleepy. I want to take her home in my pocket but I don't know if it'll happen. She'd get me warm blankets and cover me and then rub my little body underneath them and like touch my head before she left. Just a really nurturing lady. I love Judy.

I was so out of it from the amount they gave me at night that I was suckling like a baby every time I woke up. I was so embarrassed but it was kind of cool cause I always wondered how newborns could move their tongues so fast. But I guess the answer isn't morphine either.

Fast forward two days to yesterday, they said my hemoglobin was so low that I had to have a blood transfusion which I hated. I don't know what it is, I think it just grosses me out. I had two bags and it took all afternoon to early evening.

* * *

Sorry those were all written really separately and on different amounts of insane narcotics. I'm currently home and only on Percocet so I'm pretty sound and on the ball. I don't know how to wrap that up because of how out of it I have been. But I got so many flowers and had an amazing time visiting with my sister, Kiki, Matty, Maria and my Ian almost every day. I'm glad it's over. I'm going to bed in between my children and anybody who disturbs me will feel my wrath.

Up yours, February!

I'm over this silly month. I'm sitting here in my bed SO bored and wishing I had a sunnier view out my bedroom window. The pain is pretty intense from this new chemo. The morphine they gave me isn't working so I'll have to wait till Tuesday to be able to get a hold of them because of family day. PS why isn't the cancer center open more often? Come on people.

Anyways it's getting old fast. I think it may be time to start filling the gaps with tulips, boardgames and happy music. Maybe learning to cook something new and interesting. Any ideas people? Even for a new craft or something to pass the time?! Hit me up!

J

Brrrrr chemo #5

Let's start with the pictures this time. Today I had to wear ice mitts and boots because the new chemo I am receiving can make my nail beds lift or discolour them so this is supposed to help prevent that. Who knows. Also, gross.

The first picture is of me texting Emily with my nose. It took forever and made my eyes cross pretty bad. The next one is of me being upset because of how freezing it was! I wanted to rip my hands out immediately, they were so intensely cold it was nutters!
The first bag was an hour and a half so that's how long the mitts and booties lasted. So basically forever. The second bag was herceptin, the hormone block, and it was another hour and a half. I asked her if I'd be sporting a fancy mustache when my hair comes back or like some swirly curly chest hairs, just to compensate for all this head/face bs. Unfortunately, she said no. They had to monitor me for an hour after to be sure I didn't have any bad reactions or fever. I hated how long we were there! 9:30-3:30.

I've been on steroids since yesterday. They're pretty intense and I don't like the way they make me feel especially because I've become a bit of an anxious person in the last few years. It's hard to try to stay calm when your heart's beating like this constantly! I'll be on them for 3 more days and then thank God it stops, but then the tiredness kicks in and apparently it's pretty heavy. Which is hard for me to even imagine because even yesterday, just before chemo, I still couldn't walk across a room without having to sit down because I would start to see black. I have to continue the shots I had taken last round (which also make you feel like you were hit by a truck), I'll be having one a day from the lovely Maria for 10 days. These cause insane bone pain and apparently so does the chemo so I have some morphine and I need to get over myself and take it because I was too afraid to and just toughed it out last time. Easily comparable to earlyish labour pains, not worth it, I see that now. So we'll see how it goes. Hopefully I am able to find energy somewhere. But if I can't, I need to remember that it's only 9 weeks and I have 5 of 8 treatments under my belt and that makes me a pretty happy little lady.

I wonder if that's everything. Am I forgetting something? That I want spring and tulips SO bad? Not even outside, IN my friggin house. I plan to buy them constantly. And daffodils are nice but a little cliche for me these days. And I can't wait to run away to Wakefield all summer and see some of my favourite people and leave with all their buttercups. UGH buttercups honestly just make me happy. I'm getting chatty so I'll get going.

thanks for reading.

WAIT!
Look at this fantastic quilt Kiki had made for me --- is this the shout out show tonight?
I felt like it would be yellow but then it was my favourite colour so it made my day. Happy birthday Kiki, thanks for the present! Ouch!

Chemo 4 and an oopsie

I sucked it up and went to playgroup last Friday, thinking I was being a hero. Of course within 12 hours we were sick. It was just sneezes and congestion, but for me that ends up making me pretty miserable and is way harder on me than the girls.

I go for bloodwork before each chemotherapy to make sure my white cells are high enough to get it again. Well this time, somebody read it wrong and gave me the go ahead when I was under. I know, drama rama once again, right? The phone rang the morning after chemo and it was my nurse with the "bad news" and she said I'd have to start injections, one a day for 7-10 days to get my white cells up. Basically in place of a blood transfusion. The home care nurses came for the last 3 days but after that, I have to do it myself (never gonna happen). Each shot is worth over a thousand bucks! That's insane to me. Oh, and it makes your bones hurt pretty bad, and even worse yet, makes you feel like you've been hit by a mack truck. Bad. I have no energy and can't stand up really. This morning I came down the stairs and had to lay down on the landing for a good 10 minutes before thinking about moving.

I think that's all of my updates.... sorry to cut it off, I'm feeling yucky and can't concentrate too well. I'll write again in a few days and put up a fancy picture or something.

This one's for Brian

So I guess I haven't written in a while and people (like Brian) want some more.... What do you want to talk about? Christmas? Ok!

It was pretty much the best morning ever, thanks to so many people who were so incredibly generous. Santa dropped stuff off for my girls to other houses and they dropped them all off in time for us to add them under the tree Christmas morning. At one point we had to take a break because the girls got so distracted by what they had already opened, it was crazy!
We had decided 2 years ago to spend Christmas day at home just us 4 (or 5 or 6, whatever it ends up being) and it was truly relaxing and amazing this year. No pressure, we just did our thing, had a nice nap, too. We even had a tea party with my mom's beautiful tea set that my Nannie had given to her, so that was really special to me. Our lovely friend Jen had given the girls their own tea set that they used, cause I sure as hell wasn't going to let them touch mine! Snap!

I took the tree and decorations down on boxing day. I know it sounds crazy, but all December long, you look at that tree and get so excited about its purpose. Then after Christmas day it becomes a part of your 'to do' list, and it's not easy for me to enjoy anymore. I love crossing stuff off lists, so it was very liberating. I was so tired afterwards, but it was so worth it.

Stuff is getting a little trickier these days, since the last round I've become weaker just with day to day stuff. When I told my Nan how easily I get tired or how I need to rest at the top of the stairs, she said it sounded like getting old. What a drag! Also my eyes are very dry and it always feels like there's a little fan sitting in front of my face making them water and get foggy.

My next appointment with my doctor is coming up next week and chemo is the following day, so I'm sure it'll be a little while before I write again. I'll try to think of something better to write about, who wants to read about barf and sleepiness over and over?

I realize now that a lot of people who didn't read before have started to now... so sorry in advance for all the nudity and bellies and boobs. You know me! I was a little too proud when it came to pregnancy and breastfeeding and these pictures will never get old for me. Hi Nannie! Hey Grandpa! Surprise, I love youuu!

Bahaha. Ok here's some photos (no boobs, I swear)


Here's a pic of the tree before:


The snacks the morning after:



And my babies on the stairs: