Thursday, July 20

Oh Helloooo.....

Well! My heart is singing today that for sure! I had my regular bloodwork/ check in appointments today and the Doctor told me I'm responding exceptionally well to the chemo and that the mass in my breast is definitely smaller. FUCKIN A BUBBA. Initially I didn't have much hope for the cancer to shrink at all, as the surgeon had said my type of cancer doesn't usually respond to chemo in that way, but hey, someone had to prove them wrong right? As always in the week before the next treatment, I have been feeling really good. The sun and I are in a constant battle and I over did it the other day by going a little farther than i usually go, to take Jake up to Riverdale farm to meet some friends and then had to navigate the the walk home in scorching high noon type heat. I couldn't cool down and I was bleary and sweaty and nauseous. Oh well. Lesson learned.
It's funny, since my diagnosis, a few people have come forward to apologize for not reaching out right away, or not really responding to all of this. What I have to say about that is this: I love each and every one of you. Just because I'm going through something and decided to share, does not mean you have to do anything. Doing what you want to do or can do is just fine, even if it means you sit on your bed and have a cry for me but don't tell me, or decide there's to much going on for you right now and a heart text is all you've got. I'm not expecting anything. I just wanted to blog so that you guys wouldn't worry and you would know when I wasn't feeling great so that if you wanted to you could reach out at the right time.And also read about the good days! like this one!!
So. I'm almost halfway. I know I keep chanting this mantra, but it's keeping me going. This whole shrinking tumor thing is a bit of a game changer in my mind though. It could mean a less hardcore surgery/reconstruction later. It makes me feel like I chose the right path, like there's a point to doing all this. There are still things to be watchful for, neuropathy for one. That is nerve damage from the Taxotere, which consists of aching and pain, numbness and tingling in fingers and toes. The Doctor says I have a 50/60 percent chance of developing this, and that it is usually mild and manageable. The other ladies in my support group say, hydrate insanely, have good pain killers, rest and eat. So I'm going to work on that. I don't have as much fear about any of it right now, simply because of my check up results today. I feel a teeny bit teflon. (knock on wood, sacrafice a small animal, spit out some rum) and I feel that because my body had been so good so far, that I wont have any serious problems down the road. Here's hoping. Thank you again for all of the love. My next treatment is Monday the 24th at 1:30 if you want to say hi! Take care of eachother. J

Sunday, July 16

Almost Halfway....

Well this past week or so has been an lovely blur of cottages and summer fun. I didn’t have too much trouble with the sun, this time around I wore enough sunscreen that had I actually become a vampire, I would have survived.  A very large hat is really the thing. So even though I looked like a pasty redneck (the large hat is a Canada day special, straw cowboy hat replete with red trim ), I won. I even went for a swim in the lake and it was glorious. Until I jumped in the water, I hadn’t realized how precious I was treating myself, I unfurled in the waves like a long lost mermaid and instantly my body felt good. I swam and dove and splashed and most of all laughed in joy. I’m still me. Th only draw back to all of this lovely distraction, is now I only have 10 days until my next treatment. I get nauseous  just thinking about going back into the hospital and sitting in that chair. I now have an adverse reaction to the smell of alcohol wipes from giving myself all the injections of neupogen, but I’m becoming a pro at it! I have had some of the bone aching this time around as well, but not until the last three injections and Aleve + heating pad seems to do the trick. My hair continues to disappear, I still have my eyebrows and eyelashes, but my armpits are smooth, and, *cough*, down there is thinning out as well.
When we get home I’m going to shave my head right down to the skin as it is patchy stubble and, I am thinking of getting a Henna Crown!. This salon in Toronto that does hair and henna parties, does a special treatment for ladies who suffer from alopecia or are in treatment for cancer and have lost their hair, it’s beautiful. The young woman will come to your house or visit you in the hospital and spend an hour and a half with you decorating your bald scalp with beautiful Lotus designs or Peonies or Buddhist symbols, whatever you choose. It lasts about 10 days...
     Ok time for the mental check in. I’ve been much better since my last blog post and that few dark days I had. I feel optimistic again, and I recognize, now that I’ve done this twice, that that is how it goes. You go for your treatment, you feel like shit, you wonder how the fuck your going to get through however many more you have, you go dark, you feel better, you eat some really yummy food, you feel better, you have hope.
It's funny, I've recently had this this thought that pregnancy really prepared me for chemo. Weird right? I had a really easy pregnancy, besides some heartburn and some hip tendon aches at night, I really sailed right through. But I did not like being pregnant. It felt really strange to have something inside of me that was alive. I had nausea most days until about 1pm, in my first trimester, so I learned how to assuage it and how to function. dealing with the unknown on a daily basis in regards to my body became the norm, and that's how I feel right now. I don't like what's happening to me, but I have no choice. I feel calm about it. I've had to gather strength from this part of me before, the deep part of me, the primal protective part. It's strong, it's not going to let me fail. I've got this....
Thank you to everyone for reading, thank you for sending cards and treats, they really help. One week to go until I AM HALFWAY!!! Monday July 24th 1:30. Wish me luck. Love you guys. J

Friday, July 7

Woah Nelly...

Well, my second treatment was a bit harder than the first. We've been spending a lot of tome up at the cottage just to get away from the city and the heat (which I can't abide any longer, I need to be indoors between 11 and 3 at least), so we had come back from the country to go to my treatment and then scoot back up the next day. The wait was shorter this time only half an hour compared to the 3 hour delay last time. And it was quiet. Holiday Monday is the day to be at the Hospital! Anyway it went off without a hitch, the nurse was excellent and I've only got a small nickle sized bruise on the top of my hand from the IV. Chemo drugs are notoriously hard on your veins and in fact can damage them and collapse them permanently, that is why, often with longer treatments there are options for a semi permanent way to administer them. I decided I didn't want either option if I didn't have to, since I have a three year old climbing all over me most of the day, I just didn't want to risk injury to the site or damage, or hinder my ability to give my child the type of affection he is used to. So far so good. Six treatments seems like a lot but it's actually the shortest way to go, so I'm holding on to that. I need to hold on to something. Mentally this treatment(#2) has been more difficult all around. About day 17 my hair started to fall out, and I cut it down to 1 inch, then this week at the cottage I had a shower and lots and lots came out and it ended up looking a bit patchy and weird, so we drove into town and went to the old school Barber and had it buzzed off. That was a relief but my scalp feels prickly and sore when I wear a hat so I'm waiting until it's all gone to do that I think. Jake thinks it's funny that I have no hair which is a relief. The nausea was worse this time around, I did end up taking some of my in case of barfing extra meds they give you. Fortunately everyone piled into the car and went to the berry farm for the day and left me and B alone to watch movies and lie around. I really didn't have much energy and the heat during the day doesn't help. What sucks about the nausea is that while you don't want to barf, you are ravenous and want to eat all the things. I try and eat small amounts, but I feel like I'm constantly snacking. Sort of feeling full but slightly sick and still hungry. The oncologist did tell me that most women do gain weight while going through chemo, as the drugs make you feel hungry. Sigh. and then Jake saw me changing and said what's that? pointing at my belly, and I replied, that's mammas belly. Jake said nooooooo, it's not... too much food!!! From the mouth of babes right? Anyway, enough of that. The next day was a little better, and today much better. I was able to help wrangle all the kids and get the kitchen cleaned up and make dinner.
I'm not one for cheesy memes about self care, but I do like this one.

The thing that happened to me this time around, that didn't happen the first time, was the mental journey I took. It got scary. It got dark. real dark. I cried like someone had died. I felt helpless, and sick and scared and just so fucking worried about everything. It is really quiet up here when there aren't kids running around, and the nature here is so lovely, the breeze off the lake, the dappled sunlight on the wooden deck, the oversized chairs covered in cushions. It's an easy and gentle place to be, and when you are battling something so internally you really have no where to hide, you just have to sit in your perfect chair , on your perfect deck and drink your weird spur of the moment anti nausea concoction and think. Think about all the things. About being a child, about past abuses, about mistakes, about how sick you feel, about how much you'd give just to have a normal day to complain about anything other than the fact that you have something in your body that could kill you. And the fear. my god. fear like this would shrivel the testicles off a buffalo in a heartbeat. Just the fear of the unknown. Trying to look forward to the future and just feeling like it's a long tunnel, with, yes, a tiny light at the end but so so far away at this point. I had an expression I used to say when things went sideways or took an unexpected turn "Shit got real now, Dog". And it used to be funny. So yeah, that was a bad day. B held me while I sobbed and then I was really tired and slept deep. But I woke up feeling much better today, brighter, more myself and I hung out on the dock with my baby and sat in the shade and watched the others fish.

And I guess it will just go this way. Days of feeling bad, feeling afraid. Days of feeling good, strong determined. I absolutely believe in the treatment I have chosen, and I feel I am in the best hands possible for this fight. So there's that. The next treatment is July 24th and I'll be HALFWAY!!!!!!!!!! I can't wait....actually yes I can, I feel nauseous just thinking about going back to the hospital right now....But I want to reiterate I couldn't do this with as much strength and dignity without all of you messaging me and telling me you care. It really, really helps. seriously. P.M me on messenger or whatsappp if you'd like my snail mail as I love hanging my cards and notes up on the wall. Here's the sexy bald girl I see in my head.
Take care of each other. We are all we've got. Until next time. J.

Sunday, July 2

Another Sunday...

The last few days have been kind of up and down. I had a good check up on Friday and the Doctor was glad I haven't had too many side effects nor too much of a reaction to the chemo.  After my appointments we braved the weekend traffic to make it up to the cottage and arrived around 8:30. It's been really nice to be around family and to watch Jake with his cousins, he adores them and they love him right back. There was a huge trampoline purchase and set up yesterday that has kept all of the kids amused and exhausted. So, me...I put the picture up of Zoe Washburn from Firefly today because I love the show Firefly, and in the beginning, I identified with Zoe the most, she is strong, she is wise, she is nobody's fool and in love, she is just as strong as when sh is alone. In fact, I won a prize in an essay contest on the podcast The Signal a few years back. It was called "Why Zoe Washburn is my Han Solo" and I talked about relating more to male heroes as a child and how I didn't want to be the girl next to the hero, I wanted to BE the hero, like when me and my girlfriends played Star Wars, I was always Han Solo, and I would watch the others argue about who was Princess Leia, and be like "can we JUST get in the Milennium Falcon already?!!". Don't get me wrong Leia rocked, and she was, besides Wonder Woman, one of the few Women heroes(and dolls) I had. But, as I have changed over the years and in particular light of my journey right now, I have been feeling a bit more like this Gal
She is wild, and strong, and vulnerable. Her strength lies in her intuition and emotional landscape. She feels crazy and misunderstood and a little bit lost. (I don't feel misunderstood but the other two, sometimes yes). I feel like the strength I am drawing from River is about her ability to keep going despite all the things. The strength she seems to draw out of the very air, to fight and to keep going.
Anyway, we went to Giant Tiger to find some fun summer clothes and I made the mistake of going into the change room to try something on. Now, this is not a rant about body image or fat shaming yourself or whatever, most of the time I love myself, but you know what? sometimes, you just don't. And since I've been shedding like a huskie trapped in Florida, I've been a bit more sensitive to what the rest of my body looks like. I had taken  off my top, and stood there in my leggings and sports bra and I just sighed a huge sigh and said to myself "what the fuck happened to you?". Oh yeah, I had a baby and then  three years later I got cancer, that's what the fuck happened. I know now is the time to be the most kind I can possibly be to myself, and that now is not the time to really be worrying about weight, and I need to be kind and gentle to my psyche. But MAN not looking in a full length mirror for years at a time and eating carbs like it's the last noodle you'll ever eat, really changes your body, and it's insidious, because it's slow, and then one day you're in the change room at GT looking at a person you don't recognize that you are supposed to love, who is sick and looks nothing like the person you imagine in your head that is you.
Anyway, I got dressed and I forced myself to buy the slinky red cotton summer dress, that felt good when I put it on, and said "fuck that mirror". I felt sad for a few hours but hugs and a chat(thanks B) and a really hot bath in a clawfoot tub with salt water really did the trick. I washed my "hair" and it felt really nice to do that 'cause most of the time my scalp feels weird. I don't want to shave my head down just yet. I have registered for a class at Princess Margeret called "Healthy Eating Through Breast Cancer"  which is taught by a diatician/nutritionist, so I'm looking forward to learning how to eat a little better
To end on a positive note, I am feeling good today. I think that's the thing to try and remember, it really is day by day, and take the good when you have it. This morning when I opened my email there was a kind message from my friend Rosalind(@rosalindr ), she suffers from a form of EDS (Ehlers Danlos Syndrome) which in a nutshell means chronic pain, and ligament tissue issues which cause her to have things happen like dislocating her shoulder just by putting on her coat(!!). But she has been a wonderful support to me reaching out to talk about self care, pain management, energy conservation and #hospitalglam. What is hospital glam you say? It is this amazing movement by women who suffer from long term illnesses and not so long term, that spend and inordinate amount of time in waiting rooms or doctors offices, or hospitals that take "glam" selfies while they wait and post them on instagram with the hashtag "hospitalglam" I have joined the ranks. Bring it on. Here is an article about it. Here is Rosalinds Tumblr if you would like to learn more about her, she makes amazing jewlery and clothing, has a cheeky lovely cat and is truly awe inspiring! (hope it's ok to shamelessly promote you!!). Home today for chemo tomorrow, and then back up to the cottage for rest time. Take care of eachother and I will do my best to take care of me. Until then J.

Friday, June 30

Into the Next...

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 account here.
until next time, J