And the Days Roll On...

      So it's Wednesday today, and since Sunday the days have been fairly normal except a few things. I've managed to stay out of the sun so I don't feel so crazy when I walk outside. So that's good. I haven't been too tired to go swimming with Jake so that's good too, and he has figured out how to swim underwater!! of course in the water in a regular way, well that's another story. Some mornings when "we" wake up too early for mommy to function without and extra large coffee, Jake watches a show on my computer and I watch re runs of "Bones". It's not the greatest show to watch around a three year old, but yesterday, I did it. There was a mummy on the table and Bones was examining it  and there was a hole in the torso above the heart. I didn't think much of it until Jake looked up from the computer and said "look Mommy the lady has a hurt in her chest just like you"....devastated...I didn't really know how much he has been hearing these days regarding my diagnosis, but obviously more than I thought. I haven't been keeping things a secret per se, but I've been careful to use language appropriate for a three year old, and until I am showing signs of my treatment, I'm not really explaining what's going on. But they hear stuff, and they can sense it. This morning at 430 am I woke up sore in my bones, the kind of sore that you feel when you've been in bed too long and your back feels screwed up. So I took my temperature (to make sure I didn't have a fever, as this is the first sign I'm getting an infection) and took some tylenol. But it didn't really go away, the deep ache is in my hips, lower back, pelvis and all the way up to about the middle of my ribs. It feels like all my joints are loose. I checked my booklet and the internet and they both say this is typical for neupogen treatment. yay. I was a cranky jerk all day. I"m not good at being gracious when I'm uncomfortable, it something I should work on I guess in my current state of life. I have a feeling I'm going to be more uncomfortable than comfortable for a while. The tylenol and advil aren't really working but I don't have anything stronger right now. The heating pad helps.  I'm ok though..Jake and I are going to our friends cottage for four days of fun. I get pampered up there, good food, lots of distractions for the boy (which means I might actually get to read a book!!! or sleep!!!) and some much needed nature time. Can't wait. Until then. J.

Sunday Check in.

It's Sunday today and I've woken up to some serious dizzy....Let me backtrack.... This week has been really much better than I expected, I have been feeling 80 to 90%, with few side effects YYAAYY! I've been eating more, smaller meals and trying to eat well. It's hard though, I feel hungry a lot. And my energy had been sporatic, low for a while then a sudden burst of normal. Chemo, for me, sort of feels like a hangover you can't quite kick. That feeling in your stomach that says extra large cheeseburger with fries, but the slight nausea that makes you wonder if you would hurl even if you ate a cracker. I've been drinking Kombucha for the first time, which is AMAZING!! The particular kind I'm swilling is a black tea, ginger combo that makes my tummy feel awesome and gives me a little pick me up. I'm thinking about Scobies in a whole new light, lol. B has been amazing through this week, taking us on outings in Anya (yes, my car IS named after a certain Vengeance Demon), to get me out of my head.

Here is our wondermobile,

I'm posting a photo because I've never had a new car ever , and on the last few really hot days when I was climbing the walls to get out but was too hot and sensitive to the sun to leave the house and the baby needed to nap, we climbed in and took off and I literally felt like it saved my life.....Satellite radio, AC and a low rumble that makes your bones purr can cure almost anything, did I mention AC?!! One day we went out to COSTCO to do all that business, and the next day we drove to Mississauga, to the Dairy Creme to have a celebratory banana split (this is an annual pilgrimage, and a newcomer right of passage, so be warned if you come to visit!!)  On top of nausea and eating things, I have become quite sensitive to the sun, which they told me would happen, but I just love the sun soooooo much, I did push the limits. Twice I've had to call B to come get me out of the little bit of shade I found at the park, hiding and sweating like a hostage in a bad hotel room with no ice. (maybe I shouldn't try and write more creatively, I can't tell if that was a cheesy analogy or not, I have been watching a lot of Burn Notice lately, so forgive me).
..... Just to even out the eye candy photo's.......

...So I haven't really touched on the mental stuff I've been going through so far. It of course it's harder to write about. I'm scared. I am hopeful and  positive that this will turn out for the best possible outcome and I've been told by various medical experts that this will be so, but fuck is this ever terrifying. I have this condition you see, called "The Hamster", I tend to internalize my thoughts and feelings a little bit and when I get triggered or have a bad day, sometimes I disappear, and the Hamster gets on his little wheel and goes to town, off on a train of thought that goes around and around usually surrounding things I wished I hadn't done or things I did to people I wished I could take back, all of that useless stuff that makes you anxious but you don't really have any control over. They say that kind of worry can give you cancer HAH. see what I did there?....anyway, that's why the car trips have been good, the hamster gets derailed.
My mom sent me this amazing book, I highly recommend it, it's called Stumbling Towards Enlightenment an illustrated guide. It really appeals to the artist in me and really shows you how many phases of being in crisis mode there is! It helped me identify what I was feeling and it helped me ground. It's the worst when Jake is asking me to do something and I feel like it's going to take everything to do it. Or late at night when the world is quiet, and I can feel myself settling into my body a bit and I have to be aware of my right breast and what lies there. I wasn't wrong about it looking like a scorpion, it's 5 centimetres wide and almost 7 centemetres long. It doesn't hurt. and before chemo I was feeling little twinges and some pain there once in a while, but since chemo, that spot has gone dead. At least that's what it feels like. I'm glad. I know that it's not this evil outside force and its not something that has "happened" to me, it's my own cells, mutating and gettin' fancy. Stop it already alright? Sometimes the hardest part is knowing it had been there for a while, growing silently and slowly (thank Cthulu)! When did it start? why did it start? why me? 1 out of 9 of us will get some form of breast cancer. I'm not genetically predisposed to it, no one in my family has ever had it. I'm not the healthiest eater, and yes I drink (not heavily, just the regular "mom" wine amounts) but 'cmon Universe, did you have to clock me with such a large sledgehammer?.....
back to Sunday and the dizzy... I am coming up on a week into my first treatment (yay) but, this also means this is when some of the trouble can start. I have low white blood cells so I am more susceptible to infections (boo) I am giving myself injections of neupogen, which is a white blood cell booster, but there are side effects to that too. Flu symptoms, dizzy, headache. Anyway, they say to call the hospital if you have any symptoms so I did and the Doctor on call says it is probably dehydration. (yes mom, I know, I know!) so I'm drinking lots of fluids and resting as much as I can. Until next time. J.

Chemo Coaster

                                                 I've titled this picture the Chemo Coaster.

8:00 am--It's the day after my first chemo (1 down 5 to go!), it's early morning and Jake and I are sitting on the couch together watching Finding Dory. I've had a small bowl of oatmeal, my anti nausea meds and a coffee and I am so relieved to be feeling ok, I can't even tell you. Actually I will tell you because otherwise there would be no blog ha ha. Anyway, yesterday went off as expected (thank you Sarah, and Cindy for the heads up) I can't express enough how important it is to talk to people who have gone through this before! it has given me so much peace of mind to hear other journeys and help me set up some kind of order in my head about all of this crazy stuff.

10:00 am-- ok, so the nausea comes in waves, but it's about 2 on the scale. Eating small smacks about 2 hours apart has been helping. Jake and I went to the drop in centre we usually go to and had visit and some play time. I'm finding it a bit hard to concentrate, one of the anti nausea drugs is a stimulant to counter the drowsy of the other and it's making things a bit surreal. Like having just onnnee too many cups of coffee. No other physical stuff. Just kidding HOT FLASH

12:00--at the park, Jake is runing around the splashpad and I'm feeling gross. The Thought of walking all the way home is daunting, I call B for a pick up and we go home. I have a snack and feel better.

2:30--the nurse calls to make sure I'm on time to come for my injection lesson. You see one of the drugs, on top of the chemo, that I have to take is called Neupegen and it stimulates your bone marrow to make more white blood cells. It helps decrease the chances of infection while you have zero immunity. Anyway, it's a daily injection, like an insulin shot in the subcutaneous fat. The downside is, because your bones are working extra hard, there is a chance I will get aching in then and possibly flue like symtoms..Booo.... HOT FLASH

3:15--waiting to go in. I think sometimes this is the hardest part of the treatment, seeing so many other women in various stages of recovery and treatment, it's scary to see the others that might not be doing so well. I feel an immense amount of compassion for them and always hope the best. I chatted with a really nice older woman who was a year into her treatment, she asked me how it was going for me and where I was at. It was nice to make a connection. She looked good. She had already gone through her chemo and surgery. When I asked her if she had had surgery she nodded a little and looked down, very sad. I couldn't tell if they took one or bot of her breasts. I'm not sure how I'm going to feel about that when he time comes. I am pretty sure we are going to take the whole right breast off. The lesson from the nurse went fine.

4:45--My friend T had come over to keep Jake and B company while I was gone and when I got back, she went and did a little grocery shop for me and I made supper. Then L came after work and took Jake to the park before we ate. It was a lovely family dinner, shake and bake chicken, mashed potatoes and gravy, peas and corn and salad. I managed about half my chicken and all the veg, with about a cup of potato.

7:30--Jake was super tired so went upstairs to bed. I fell alseep with him and woke up at 10:30. The girls were gone but not without doing the dishes and tidying the toy mayhem that is my living room. Went back to bed. Woke a few times, felt gross, went back to sleep. End of day 1.

Lots of you sent messages during my treatment and it was so lovely, so thank you. And thank you for the phone calls and check ins. I can feel the love. ---Jeff

IT'S TIME...

WETHER YOU SUCCEED OR NOT IS IRRELEVANT, THERE IS NO SUCH THING.
                      MAKING YOUR UNKNOWN KNOWN IS THE IMPORTANT THING-
                                   AND KEEPING THE UNKNOWN ALWAYS BEYOND YOU.
                                                                                                    -GEORGIA O'KEEFE

                                                         So I went and saw the Georgia O'Keefe exhibit at the AGO, and it was absolutely the perfect place for me to be. She is such a great artist, her pieces just exude strength and pure essence of the thing painted. Not really much to report on the appointment front. Had bloodwork and a chat with my  Chemo Oncologist, who at this point I had not met. He is the foremost Doctor in nausea treatment I've been told so thats a good thing! He has discovered Olanzepene treats nausea very effectively and prescribes it as needed, so we shall see.
                                                         I have been getting some twinges and a little bit of pain in my breast at the site. But it only seems to flair up when I'm talking about it or thinking really hard about it, so I'm not sure if that's real pain or psychosomatic. I am becoming used to the long waits and the appointments that go on forever already. I bring snacks and a book. I just got new readers that make look quite foxy, if I don't say so myself. Every day is a different day. Some days are good and it's business as usual, other days, there is crying at everything. I'm worried about worrying Jake, I'd like him to understand that even though I'm not well, I'm still me and I still love him. Tomorrow is the first chemo treatment at 1:30 and Brian and I will be going together. I'll let you know how it was. Today we are going to spent the sunny afternoon at Kensington market as a family, have some snacks, visit some friends and try and be as normal as possible.

Ready Set Go....

                                          (illustration by Raffi Anderian)


Ok, yesterday I got the results of my CT scan (chest, thorax, abdomen) and it looks like my cancer has not metastasized! YYYAAAAYYYYYYYYYY!!!!! this waiting for the tests, and then having the tests and then the waiting for the results gig really sucks. I have given up most coffee as my anxiety level had been very high lately. For a few reasons (obviously). When I was first diagnosed, and the doctor only had my ultrasound and my mammogram to look at, he suggested I would have a lumpectomy first, then chemo, then radiation. My bone scan came back clean, so I was stoked, it hadn't spread there. Then  I had my MRI which wasn't as scary as the scenes you see on TV, it made  that sounded to me like minimalist techno beep, beep, beep beep beeeeeeep.
There's a feature of being with Princess Margaret, they give you access to your results and appointments in a webpage called the patient portal. Now this is great and crappy at the same time. Great because you can see when all of your appointments come up, but crappy because if you get a scary test that is hard to interpret yourself, you have to wait until your doctors appointment to have it deciphered. So when I had my MRI and got my results 24 hours later, I read that everything was as we thought. then I got a call that my surgery had been cancelled and that I would be starting chemo almost right away. It turns out it is bigger than we thought 5cm wide by 6.5 cm long, up the side of my breast, they also saw 3 satellite spots than need to go and it got upgraded to stage 2/3. (which means it hasn't spread(stage 3) but because of my lymph node and the size it's close) I was pretty upset. Needless to say, the surgeon suggested a mastectomy instead of lumpectomy. I agree.
You see, invasive lobular carcinoma has a predisposition to be "fuzzy" around the edges, sort of like a childrens picture of the sun with the little offshoots or tendrils. They are notoriously difficult to remove with "clean margins" (all of it). And my surgeon said he could do his best but there might be some left that he cant see or get to. So I say cut it off. I want %100 cancer free, lets not fuck around with my life ok? So that's what that first picture up there is all about. that lovely girl has had a double mastectomy and had reconstruction and tattoos. Gorgeous right? anyway, I'm only having one taken and we will see how my skin reacts to the surgery and radiation.My next post will be less about the technical and more about how I've been feeling.

Just a side note WOW!!!!!!! I am so overwhelmed and grateful for all of your love and support! When I told the INTERTRON about what was happening to me, I had no idea how much love I would be getting from all of you so thank you so much. It really means a lot to me that you all have my back, and want to follow me in my journey. And I didn't mention this in the first post but  I love all of you too, and just the thought of you guys thinking I am strong has helped me stay strong. My BFF Casey has been communicating with me through Whatsapp, leaving voice messages and sending pictures, then I get to reply. It's sort of like a conversation but on your own time. If any of you Victoria peeps would like to do that you should download it to your phones!! it's nice to hear the day to day from others it makes me feel like we are sitting and having a cup of tea on a cozy afternoon. Love you.