So cutting my hair was absolutely the right thing to do, even though my hair was fairly short to begin with, there was something sad about running my fingers through it and coming out with 30 hairs instead of three or four! The only mistake I made was not letting Jake help me do it, for as soon as I came downstairs fro the bathroom he threw a fit crying and chanting don't cut your hair Momma don't cut your hair. After he calmed down, I figured out, by asking him questions, that he was upset, not about the haircut itself, but about the fact that I did it by myself and didn't let him help. I had forgotten how much silver I have in my hair, and I must admit, I have cut it down to 1/2 an inch, and I look a teeny bit like Carol from The Walking Dead. Now if only Daryl loved me as much as he loves her!! I'm at the hospital today for bloodwork and oncology pre chemo check in. I put make up on and my spiffy shoes. It's funny that now of all times I feel like I need to care about that stuff again. I feel good with makeup on and I want to start caring for my health and appearance more. I think cancer for a lot of us is a wake up call you know? You really have to get to know your body again and do constant check ins to see where your head is at. Foraging a new connection to yourself through sickness, is new to me, but it's vital. I feel more alive right now than I have in years, connecting with the things I like and people I love has re grounded me, I feel strong. Yesterday I went to see another Doctor for an un cancer related issue, I had bee referred to this specialist before I was diagnosed but decided to keep the appointment and let her know what was going on for me. After the "I have cancer" chat, she asked me if I was going to get a mastectomy or not. I said I wasn't sure what was going to happen, but that most likely, they would take at least the one. She said "well, I had the same cancer as you, and I had them take both breasts and give me implants, and I've never looked back, you too, will get through this, it's only a bump in the road of your life, you are going to be fine". It still surprises and amazes me, how many women are touched by this disease, and how wonderful it is to get a random surprise "yaay, you, you got this" from someone I've just met. Not to mention all of the love and positive messages from all of you, my friends and family. Thank you. I can't begin to explain how wonderful it feels to hear all of you (sometimes daily!) telling me you care and that I've got this. The thing running through my head today is about knuckle tattoos F#CK CNCR... just a thought. Just a reminder that my treatment is Monday at 130 my time which is 1030 west coast time, feel free to message me while I sit in the chair!! I've also posted photos of the new hair on my instagram accounthere.
until next time, J
So here we go..got back from the cottage Sunday night, Monday was a good day, I was a bit tired but it felt good to be home doing normal things. Monday night the top of my head stated to hurt, like I had slept on my hair the wrong way or like when you have a high fever and everything is aching. When I was a child and was sick with a fever I used to tell my my mom "my hair hurts". Today my hair has started to fall out. I knew it was going to happen, it's literally the first thing out of the Oncologists mouth when he(or she) begins to tell you about the side effects. In fact the the first appointment I had with my Oncologists, I stumbled out of the office and into the rest of the Hospital with two prescriptions, one for a wig and one for a mouth wash in case I get mouth sores, which is another charming side effect of the chemo (none yet). But at the beginning when you're first learning all about the new buddy in your breast, they tell you all of the things all at once, what kind of cancer you have, what treatment plan they recommend, what the side effects are and in what order they will appear, and by the way, did we mention you have to come back tomorrow for all your blood work. When all you are hearing is stage 3, it's fucking stage 3, are my bones rotting too? is it in my lungs or liver or bowels? (thankfully, no none of these) but before all the scans and tests, you don't know and you spend weeks, wondering what the twinge in your back means or if your knees are hurting because you're just old or are there tiny new little tumors growing there? anyway, I'm cutting my hair super short tomorrow, it will be less stressful I think than pulling out my bangs every time I run my fingers through my hair. I have reached out for support and found a wonderful group of ladies at https://www.facebook.com/groups/RethinkYWN/ it's a closed beast cancer group for younger women ( I was accepted at age 44 so I'm not sure what they consider young!) and https://www.facebook.com/groups/Lobular/ specifically for ladies with invasive lobular carcinoma. Already I've connected with a 41 year old mother of two, two years out of her treatment and still cancer free. She was encouraging and supportive, and it felt good to connect with another person who knows what I'm going through. So this week I have appointments Friday in preparation for my second chemo Monday the 3rd at 1:30. That's right holiday Monday, 'cause cancer never sleeps bitches...Heading up to our cottage this weekend for some family time, the cousins and Papa. Hoping for the kind of joy you can only really feel watching children running round being kids. love you, J
Last night at the cottage I went to bed early, thinking I could try and catch up on some of the sleep I’ve been missing (if I’m honest, for the las three years, ‘cause kids, boy howdy). And had I been asleep I may have missed the amazing storm that rolled in over the cottage and lake. It was very dark, I had just killed two hours watching my favourite Mighty Boosh episode (Old Gregg) and Bridget Jones’ Diary and the rain started. Lightly at first, gently tapping on the newly installed metal roof above me, then a little harder and faster, building into a crescendo so loud I thought for sure the sky was actually falling in chunks onto the ground. I got out of bed and rolled open the sliding door off the bedroom and stood on the other side of the screen, listening. The rain was coming down so hard it was actually bouncing off the ground and back up two feet to hit my legs through the screen, and the thunder was cracking and rolling across the whole sky while sheets of blinding light flashed, illuminating everything for an instant at a time. It was windy, and the air smelled renewed and fresh. I was just a human, standing in the weather, smelling, feeling ,tasting nature. I felt alive. Not sick, not worried, just present and grateful. Just alive. My bones stopped really hurting this afternoon, and tonight I didn’t have to give myself a shot. My body was so relieved at this, I felt free of this horrible ride, just for a few hours. I wished out loud, this afternoon for a strawberry rhubarb pie, and low and behold a delicious hot pie was presented for dessert. It was so, so good. We all played dominos on the floor in font of the fire, which is to say Jake ran around in circles and jumped up and down while me and L set up said dominos in patterns for him to knock over and get us to do it all over again. It was awesome. There was lots of laughter today. I’m worried about getting sick because I don’t have an immune system. Jake has a cold right now and I’ve been trying not to eat with his fork or kiss him directly on the mouth. I’m worried about skinning my knuckles or cutting my finger, because I don’t know how long things like that will take to heal now. I am concerned that my bald head is going to freak Jake out. I’m worried that my bald head is going to freak me out. Thank you everyone for your continued support and love via the intertron, and to whomever sent me the Ornamental Death Star YOU ROCK!!!!! thank you so much it made me so Happy!!! If any of you would like to comment or ask me any questions, please do, I love hearing from you. Until next time. J.
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.
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 Kombuchafor 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 calledStumbling Towards Enlightenmentan 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.
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
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.
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.
Sorry to be the bearer of bad news folks, but life has decided to throw me another curve ball. I have been diagnosed with breast cancer. Invasive lobular carcinoma to be exact.
Around April 18th of this year as I was lying on the floor of my son's room, in the dark, waiting for him to FINALLY fall asleep, I decided to do a quick feel of the boobies as the right one didn't feel "right". I know it sounds weird, I didn't have any pain or any other sign that something was there, but I just had a sense of it. I was right. Deep in the tissue at about the 8 o'clock position on my right breast, there was a spot that was harder than the rest. It freaked me out, but I went to my GP right away and she sent me for a mammogram ( my first, and boy howdy was that uncomfortable!) as well as an ultrasound. They came back about three days later, as suspicious.
I have to give kudos to my amazing GP, she does not mess around! She referred me to the rapid diagnostic centre at Princess Margaret Cancer Hospital link here...they are one of the best in the world for breast cancer detection, treatment and care. I had a core biopsy and a needle aspiration of my lymph nodes on a Friday, I had the results Tuesday. the C word.
So the good news is, my cancer is hormone positive, but her2 negative. What that means essentially is that with hormone therapy treatment after chemo, surgery and radiation, the statistics are great. I have the second most common form of breast cancer, invasive lobular carcinoma. just a side note, it's been really interesting seeing inside my body. I mean you don't really ever get the chance right? Well I had a bone scan and saw my skeleton, and my MRI showed me my large veins and heart, and my mammogram showed me the cancer, it was strangely beautiful. The mammogram put all of the tissue in white and my cancer looked like a scorpion wrapped around my breast. Of course the news was devastating. Especially with a young child to care for, my thoughts went immediately to my family and how they would cope with this.
I want to give a huge shout out to Miss Sarah Kramer at http://www.blog.govegan.net/
who fought her own battle with breast cancer (and won!!) and who has been my "breastfriend" right from the beginning. Thank you Sarah for the support and help. And of course to B who is my Rock. I will continue on with my story up to now, in a second blog post as I have a CT of my thorax, abdomen, and bowel tonight (to make sure it hasn't metastasized ) and I can't eat after 4, so I'm going to go eat, eat, eat!!