Gift Cards That Can Assist

People are asking often how they can help. We've had lots of help with presents for the kids, Mike and I have resolved to just do stockings this year. But if you'd like to send something useful I'll make a list of gift cards that we would use. 

Groceries:

Sobeys

Costco

Giant Tiger 

Walmart

Superstore 

Gas:

Shell 

Irving 

Restaurants:

Bon Appetit (card for Harvey's, Swiss Chalet, Montana's)

Jungle Jim's 

KFC

Dairy Queen

Wendys

Burger King 

If you'd like to send something please contact us, preferably Mike as I'm very antisocial currently. If you need a contact, please look up any of my social media but honestly, if you're reading this you can likely contact us already. 

Wish List: Vacations

Next edition to the "wish list" or "impossible dreams" I have in my head. This one will cover two biggin's!

As I finally did start to come forward about, the trip that our family took last January was very far from "worry free" for Mike and I. The kids did have a great time, of course, but I'm not getting back into this tangent... On to the wishes:

Big Honeymoon Take II
Mike and I have a dream vacation in the back of our heads for a long, long time... I think about 10 years to be honest. It would be to fly Westjet first class down to Jamaica, stay for 2 weeks in a butler suite at Sandals, doesn't need to be the top of the line, just one with a nice whirlpool tub and fully stocked bar lol. We love Montego Bay, it was our location for our honeymoon, but part of us wants to go to Negril and stay on the lovely, long beaches. I think if we could go to either, we'd be ecstatic but neither is obtainable currently or ever in the near future. And there would be an excursion we would have to do, we'd need to visit Appleton Estates. We tried to before and it stormed so we could not have the tour, very disappointing. At least we got to sample all the liquor and it was the only disappointment that trip. Ultimate vacation would also include us getting to have a trip to the spa, have massages and more pampering, whatever was available!

Real Worry Free Family Vaykay
Maybe this would be me just asking for more trouble but I really wish I could have the worry free trip that we tried to have last winter. Fly to a Beaches location with Westjet, maybe I should have just stuck with Jamaica for a location, maybe then it wouldn't have been a horrible like at Turks and Caicos. Details for this one if it was ultimate family vaykay would be things like, again, a butler suite. Two weeks would be amazing, in a room that had a separate room for the kids so we could have some privacy. We'd have a nanny for a night or two so that we could go out for a couple night once or twice, and relax as much as possible. I just don't want to end up in tears multiple times like I did last time.

These are all very expensive, not even slightly financially possible dream vacations. But like I said, these are my impossible dreams

Wish List

I've been up and down all week, emotionally, so I'm thinking as a distraction, I'm going to start posting a few extravagant, basically unobtainable wishes that I would love to have but will never be able to do/receive. Maybe post a couple dreams every day or so.

Renovate the kitchen. We have the backsplash to put up but that's it. Doesn't need new appliances, just new cupboards, countertop, maybe a spacial redesign, but we'll never afford it any time soon and I'll likely never see it.

Have a chairlift installed so I can go downstairs easier. I might have to make this happen no matter what... Which leads to the last one that I'm going to post today. I'll dream more tomorrow, but lastly:

Pay off our credit cards. Every time we start to get on track emergencies happen and cancer happens, leaving us with more and more piling up. I just don't want to leave so much debt because of me....

Cheers

The World to Date: A Rant

A lot has been happening over the last few months. The chemo over the summer did not work. We discovered that I had tumours in my brain. I had radiation, another chemo, the pneumonia twice in a row. I keep hoping to go back on chemotherapy and start shrinking the tumours in my lungs, liver, bones, and the mass on my chest wall. However, I keep getting delayed, and I have been delayed, again. My oncologist is nervous of a tremor I have in arm and is going to have my head scanned to see if there is another tumour in my brain. If there's one tumour, it may possibly be treatable, if there's no tumours, great, if there's mulitple tumours, it's likely not treatable and all chemotherapy will be stopped. Treatment will have come to an end. I need to wait on a scan to know if I have the chance to continue treatment or if this is it.

Because it has come to this I have decided to make a huge fucking rant post. My sister said to me last weekend she rarely hears me complain, well, I'm about to.

I'm frustrated that Mike and I always seem to get the shaft and have to work triple hard just to get what others are given. Things like the wish vacation that we were sent on last January. Many were so happy for us and we were so excited. The entire week was stressful and upsetting for Mike and I. Yes, we can easily say that the kids had a blast, they did not have to deal with all the upsets that we had to constantly argue about, the problems that kept arising over and over again. The most relaxing time of the entire vacation for Mike and I was the flight from Turks and Caicos to Montreal.  Everything else was a aggravated, disappointing mess. I was in tears there more than once. Not a worry free vacation at all.

And it's not just that. Constantly we go away and we end up with the hotel room that is falling apart. Our plans are destroyed and given no compensation or remorse from the parties involved. Oh, sometimes Mike and I can complain to the point of a slight rectification, but only if we're willing to fight, and it's always a fight.

I might be finding out tomorrow that I'm at the end of the line. I might not get to ever try to go on a real worry free vacation with my family now. I might be preparing for the "lasts": the last Christmas, the last birthday, the last summer vacation, if I haven't already passed that line. And I'm angry. I don't want it to be the end of the line. I don't want this to be all that is available, but it seems to be the way our lives go. Yes, I probably sound like I'm whining, but right now I don't fucking care.

I know, too, that I have had small fortunes sent my way. I have several friendships that have developed due to cancer that I would not give up for the world. Whether we speak only on Facebook or in person, I cherish these friends, dearly.

Honestly, I want to type more. I'll have to do a continuation. I'm too sore and the painkillers are not kicking in all the way yet. But for now you have my bitching notes. And I'm going to remind people that I don't want to respond to 500 "any news" messages, tomorrow. I post stuff when I'm ready

Break Down of Stage 4 Breast Cancer a la Julie

A movement is starting to trend for metastatic breast cancer. Many of us are beyond frustrated with misinformation and ignorance of metastatic breast cancer, and breast cancer in general. Facts are now being spread to help people realize that any early stage breast cancer can develop into stage 4, even stage 1, we just don't understand why or how. This has been "triggering" some, apparently. I'd try to empathize but this is reality, you don't get to keep your head in the sand. No one wants an early stage breast cancer survivor to find out they're now metastatic, but the truth is 20-30% of them will. And that doesn't even include those that are diagnosed stage 4 denovo (from the start).

Being stage 4 has not just flipped my world, it's made a lot of it crash and burn. I've lost my hair 3 times now as stage 4. Last night I went to wash my hair and it came out in clumps from the radiation treatments for the tumours in my brain. I looked like some massacred doll when a 3 year old found a pair of scissors. Yes, it's "just hair" but having hair makes you feel a little normal for that split second that you see your reflection. Now I've got a shaved head so I don't look like a living Halloween decoration.

I've gained 50 lbs because of treatments this year. 50 fucking pounds. I've never weighed this much, even pregnant. I'm fat and I hate it for more than one reason. Don't say it's just weight, don't worry about it. Being fat makes more complications in my life. For one, clothes. Nothing fucking fits and I'm not about to walk around in muumuus. Another thing is it makes my back and shoulder pain worse from the non cancer shit I get to deal with, so that's more fun. It puts more pressure on my lungs, you know the ones filled with tumours and now with pneumonia because my body hates me that much. And I already have tumours in my liver, I don't need it to start getting fat. Not to mention just body image in general. I even gave up on having breasts because I found out the cancer was growing around and under my implants. It was just better to take them out for easier monitoring the cancer, plus it was causing pain with the pressure that would happen from compressing the tumours.

Lungs, yeah. I miss breathing. Coughing constantly because of the tumours and now I have pneumonia for the third time this year. I can barely do anything without becoming breathless and sounding like a 10 pack a day smoker.

Independence. I used to be so independent. I could do whatever I needed, myself. Then the car accident. Then cancer. I can't drive now because of the risk of seizure until I get a clear MRI of my brain. I can barely walk because of the extra weight killing my back and my lung refusing to process oxygen. So I get to ask for help with.. everything. I can't even cook well right now because of the energy and effort. I'm so tired of needing to ask for help. I hate it. I hate it so much. I really don't think people understand how much it kills my soul having to ask for help. A lot of it, I know, is rooted in the fact that I never want to be like my mother, but that's another rant for another time.

I'm constantly on the edge, wondering if the treatments will work. The list of options is getting shorter. I constantly get to try to figure out if I should try to live life and push treatments or take treatments and miss out on events. I get to be the one stressing over am I asking too much? Will pushing a chemo make me progress to the point that I cannot recover? Will I regret not being able to be a part of something that I could try to attend but only if I push treatment? Constant fear of fucking up is a part of my life. And making the wrong decision could make that life a lot shorter.

Having cancer has eaten away at more than just my body, it's taken away a lot of our finances. Yes, even though we are in Canada and a lot of my treatments in the hospital are covered, there's still a lot that costs us and takes away from everyday finances. There's prescriptions for one, constantly getting drugs to help with the treatment. From pain killers, antinauseates, steroids, constipation, diarrhea, and so much more. Then gas, parking, trying to keep up with daycare, food because you just cannot cook for various reasons, hospitalization messes up the finance plan, and so much more. People ask how they can help and it's hard because, really, you need financial stability and no matter how many things you try to cut or save on, something always depletes all your money. Our savings died long, long ago.

So this is life now. I put this out there to let people have the opportunity to understand. I hope that it helps.

Starting Radiation

I'm about to start my radiation treatment for the "multiple tumours" in my head. I use quotes there because I have not had the courage to ask for specific numbers. All my medical professionals keep using those two words and add in that "they're in all parts of your brain". I apparently shocked the radiation oncologist with how few symptoms I have and the fact that I was able to pass all the reaction tests they preformed. That makes me more nervous than I'd like to admit.

Good news is that I'm pretty much being fast tracked here, and it's aggressive treatment for aggressive cancer. The radiation oncologist is hopeful of a complete response. (Translation: kill all cancer cells in brain by end of treatment).  I did forget to ask when we'll next be scanning to see how things are in my head, I'll ask next time I see someone.

My medical oncologist is going to be starting up chemo two weeks after I end radiation so that the rest of my body doesn't go all cancery on me. I just hope my lungs don't go on strike, they're rather pissy these days. I sound like a worn out smoker, hacking and coughing on the fly. Anywho... back to keeping my spawn from killing one another. Wish me luck!

Treatment update August 2019 - Mealtrain

Hey interwebs

I ended up at emergency because my oncology nurse was nervous of my breathing and increased cough. As far as they can tell after six hours of testing and saline solution, I'm physically and mentally exhausted.

I'm not overly surprised. FEC is an aggressive chemo treatment. It's used with a lot of early stage breast cancer because it is aggressive, and now that I'm late stage, my body is already weakened. I was getting spoiled with treatments that gave me a higher quality of life so I did not rest enough, I guess. And, well, I'm having a lot of noncancer related issues that are taking their toll on my mind and body.

One funny thing that happened was just before I was instructed to go to the hospital by my nurse, I had decided to ask for help in creating a new mealtrain account for our family. Mealtrain is great because people near and far can help. It is free but you can apparently pay for more options and fundraise on it as well. I've just opted for the free version that helps with one meal on days that you need it. That's the great thing, you just open the days you can really use the help. Friends can either deliver food, order food for you to pick up or have delivered, or send gift cards to cover the meal. It's one less thing for me to have on my mind and lets me sleep more. As added security/privacy, you cannot just look up the mealtrain for someone, you need to be invited. I like that, you're not going to get strangers messing with the account and you can make sure that only those that want to sign up do. I'm fortunate that I've had friends local and away signing up to help.

I'm hoping my energy boosts up and I can maybe remove a few of the days I have selected, but for now I'm grateful that in a time of need, I have people helping me. Thank you!

PS:
If you are someone that would like to be added to the mealtrain for my family, please contact me. I'm not placing the link on here

By

What's your life motto turning out to be? "There's more fish in the sea"? "Tomorrow's another day"? "Be the good in the world"? My husband's and mine has been looking to be the same for the last decade: "We'll somehow get by." This could easily be exchanged with "We'll find a way," or many other close clustering of words along the same lines. But the problem is, we're getting tired of just "getting by."

We go to the doctor's and find out that the cancer is spreading, onto a new treatment: "We'll somehow get by."
We look at our expenses increasing and I still cannot work: "We'll somehow get by."
The new medication needed for treatment is another expense for us to shell out for: "We'll somehow get by."
I'm too tired or sick to cook and my husband's exhausted from work and chasing kids, order food but it's costly: "We'll somehow get by."
Appliances break: "We'll somehow get by."
Childcare costs increase: "We'll somehow get by."
We lose a main source of help and childcare assistance: "We'll somehow get by."
That new treatment isn't working, try another: "We'll somehow get by."
Kids need school supplies, clothes, broke something in the house..again: "We'll somehow get by."
Animal needs to go to the vet: "We'll somehow get by."
Our hopeful vacation has us stressed out over multiple things that won't stop or be corrected: "We'll somehow get by."
A much needed quiet night in gets turned upside down by an accident or sudden change in plans: "We'll somehow get by."
I need to go on another new treatment and the side effects will potentially destroy chances to take care of myself, let alone children: "We'll somehow get by."
I get admitted to the hospital..again: "We'll somehow get by."

We do get some positive things that happen, times that we think we'll finally get a foothold on our lives. Things do tend to go the most sideways, then. Extra things suddenly break, go missing, or simply go wrong. We're trying to see the bright side, but sometimes the brightness is the flames of our hope burning like a forest fire. The warmth of the chaotic fire might take off the chill of our despair but it doesn't help with the issues that sparked the flames.

We're trying. That's all we can do. But it's starting to feel like that all we do, and it's making us feel less like living and more like barely surviving.

Wanted: Worry Free VayKay

I need a vacation. I mean a real one. One where my hubby and I aren't frustrated or arguing with staff of the resort. One where things go smoothly. I would love it to be a location that we could take the kids with us but still have the opportunity to have couple time daily. A place to have drinks on a beach or by a pool. A place to swim and laze in the sun or dance in the rain. A place that is quiet at some places for relaxing and that is bouncing at the places you want to party.

My head is aching thinking about this.

I need a vacation where my only concern is getting the children to listen and go to bed before 9pm. Where our only fear is the kids waking at 6am. Where our only problem is having too many places to choose from to eat at meal time. A vacation where staff don't ignore us, where they are happy to talk with us and make sure we're pleased with everything. I need some place that will make sure we're always happy. I need a place that is willing to bend over backwards to ensure that we have anything and everything we need, no bickering with us on the issues when we present them, just fix the issues. Or better yet, don't let the issues happen.

I need a place that when we get back I won't have to keep repeating the response "The kids loved it" when people ask how it was. For the real response is that the time was heartbreaking and not relaxing. We made the best of it. We tried to put on a happy face for the kids. But that's not the responses the one asking wants. The kids were content and at least we have that, so that is what they are told.

It's also required that the timing work with my treatments... I am getting behind on those enough already with having pneumonia twice in 6 months. So this is getting more difficult to think of a way this could ever work. Money is too tight for now, but we'll try to save. Maybe some miracle will happen and we can go sooner. Some major sale happens, perhaps. Until then, save, save, save. It's better to set aside five dollars and slowly make it than to not put anything aside at all.

But I really need a vacation.

Bell Tolls for Thee?

There's a tradition at most chemotherapy wards, the ringing of the bell when an individual is completed their chemotherapy regiment.  Those in the ward clap and cheer for the ringer of bell, they whom stand shaking the instrument furiously.  They announce that they are finished with this floor, hoping to never sit in one of their chairs or lay in one of their beds again.  Nurses smile as they say goodbye, there are the playful quips of "I hope I never see you again" or "If you come back you had better be lost".  Hugs and happy tears are shared and the person leaves.  Today this happened twice while I was in the chemo ward. I had another person ask me how many treatments I would have until I was finished, indicating the recent bell.  If I ever ring that bell it will not be a celebratory achievement.

If I ever find out that there is no further chemotherapy treatments, if I hear that that was my last one, that means that the cancer has spread too much, gone too far, and that my days will be literally numbered.  Ending treatment when you are living with cancer does not signify returning to the life one had before cancer, it means the end of life.  Ringing the bell at the chemo floor for a terminally diagnosed patient is chilling not thrilling.

Fortunately there have been many advances in treatments, even within just the past year, let alone decades.  I am currently on a trial for my specific type of breast cancer, something that wasn't even thought of ten years ago.  This could prove to be the first targeted treatment for my cancer type ever.  The first!  Before this, it was only "blanket" chemotherapies available for me, ones that were available for most breast cancer types, but no targeted treatments that were specifically used for triple negative breast cancer.  One of the best things I heard when talking with the trial nurse was that I get to keep this trial drug as long as my body can tolerate it and it is working.  I have something I can use until the cancer adapts (if it does, and most cancers do adapt over time).  This could take months, or years, or even longer to become obsolete for me.  There's a chance, no matter how slim, that this could make all the cancer become too small to seen in scans.  A chance that it could put me in remission.  I've lost my hair to this treatment but if it means I get to stay here, I'll take it.

I'd like to note that even if I get the chance to be NED (no evidence of disease), I'll not be ringing the bell after I am told I get a break from chemotherapy.  The bell is for completed treatment, not for breaks until the cancer returns.  I also would like to say that there is genuine happiness to see people able to say they are hoping to never return to the chemo floor. I wish no one had to ever step foot in there to start.  I will still clap for those ringing the bell.  I will smile as they scan the room.  I am happy for them, but hope I never stand in their place holding that instrument.  I do not want the bell to toll for me.

Thanksgiving post - a little delayed

Thanksgiving had been last Monday, here in Canada. I was filled with turkey on Sunday and we rested most of the actual holiday. I was messaging someone that I realized might not have seen my posts about cancer progression and from that conversation came something I thought would be a good blog post.

I hate cancer. It will one day take me from all I love, it has taken loved ones from my life and from the lives of others.  For now, I am here, so I can say one of the oddest things to ever come from me: there are ways I am grateful for my cancer. I'm not happy I have it, I'm not thrilled that it is trying to spread, but if I had never had cancer there's a few things I wouldn't know or have.

Because of my cancer I have many friends across this nation and the world that I would likely have never even known existed otherwise. I have had the rare and wonderful opportunity to meet others with various cancers and share with them our laments and our joys. I have several friends that do not have cancer but because of the way it helped connect us, we now have a friendship that I could not of dreamed of finding.

I know how much my husband values me. There's always tests in a relationship, there's stressful times and many tribulations. Despite all the horrors we've faced with cancer, my husband cares for me, his love has been unwavering. He shows me daily that he loves and cherishes me.

I've seen the kindness of strangers. I have been able to witness and experience the love given by someone that does not know more than your name and maybe a brief account of your affliction. Love coming from someone that has no connection going in is beautiful and becoming more unique. Although in my mind, if someone needs and you have or can help then you do, it is not the norm. That is something that I have slowly come to realize, but seeing that there are still some out there that feel the same way warms my soul.

I know that I am capable of being stronger in spirit than I would have thought. There have been times that I thought of the next treatment and my shoulders would drop, my head would hang heavy, and my breath would be no more than a resound sigh. There were days that I wanted to say "no more", just stop everything because the feeling I would have to endure was abhorrent at best. But I did take that treatment. I did bare the effects and make it through to the better days. Part of it was for me, but part of it was for my family and friends. I'm not saying it to place any weight on their shoulders, I'm saying it because I know if our roles were reversed and I was watching them deal with this, I would hope that they could find the strength to hold on as long as they could, to stay in my life. I am not ashamed to admit that I selfishly want my friends here to talk to. I have lost so many to this date that I do not want to hear the words "they're gone" one more time. I do not want them to hear that I am gone, either.

I will also admit that some days I do wonder if I am becoming more of a burden with all that has happened since the car collision in 2008. I have become limited in physical capability due to the MVA, something that has made dealing with cancer worse. If I was a fully functioning adult there are some things that would be easier with this cancer life. I still continue, however. I do what I can and try to accept what I cannot do.

I hate cancer, I would not wish it on anyone. I cannot deny the good that this mass of unruly cells has brought into my life, though. I am grateful for the lighter side of this experience, but would still like it if one day I was told the cancer was irradiated or would be forever manageable from that day forth.

Chemo Shower - Brought to you by midnight wine

Last night Mike and I had some merlot and late night nachos.  The following idea then came to me before we headed for bed: chemo showers.

When people are going through a huge change, there's sometimes a party to help the person/people out.  People bring gifts that will assist with the change.  Baby showers, you bring diapers, clothes, formula, creams, toys, or baby furniture items to help the parents.  Wedding showers you give small appliances, gift cards for renovations, silverware, dishes, china, or whatever the couple has asked for help with.  So what about when you're about to not be as functional because of chemotherapy treatment?

You have found out you will be on chemo.  You get a couple of your best friends together and pick a date to have a chemo shower, either before the first one or after you have the first treatment for a better idea of how it will affect you.  Either have the party in house, at a friend's, or your favourite restaurant.  Decorate with things that make you happy: your favourite colours, your favourite quotes, your happiest photos, pictures of kittens, whatever your desire.  People bring gift cards for food, coffee/tea, takeout restaurants, or vouchers for cleaning, childcare, or drives to the hospital/grocery store, or self pampering things that you might not be able to afford like a massage (even just a foot/hand/scalp massage), gel nails, gift card to your favourite store to get movies/games, or a pricey restaurant that you adore their desserts.  The theme is always support and joy.  This is a great time to say exactly what you will need help with.  Make a list of needs and post it on the wall (make it fun with a poster board and make it a "pin the chemo bag on the thing they will help with" game), let people sign up for what they can do.  Susan can help watch the kids for the January 4th chemo treatment.  Jack can come mow your lawn on May 16th.  Paul will take the kids overnight on October 12th so you can have a night to yourself when you are most likely to feel like going out for a night.  Janice will drive you to your treatment on February 27th.  Chris will take you to the movies on August 19th for a fun afternoon.  Think about not only your treatment days, but the days when you are feeling a bit normal, you need to have a life and have fun.

So that's my thought.  Brought to you by fajita chicken bacon nachos and merlot.  #Omnomnom

Ode to Today

I am exhausted, I am stressed
My mind is spinning, the house is a mess.
Cleaning is not happening, a guess?
No motivation is currently possessed


I must nurse our canine
Corral the kids, protect the felines
“Don’t hold her like that” is a common line
Ask me how I fare? “Oh, fine”


Chemo to take, and caffeine to think
Want to just slip in bed and sink
Hide in the covers, gone in a blink
Forget, disappear, let my mind sync


Clothes to fold and put them away
Stand looking at the room with only dismay
Appointments, calls, food needs made
Close my eyes and heart to today


I cannot feel outside of the void
Different methods with, I have toyed
The result the same, still annoyed
Throw on a smile, a worthy decoy


Do what I must and continue
Trudge, walk, crawl, roll through
Tomorrow may be different, true
But the darkness still floods deeper in hue

Moments of Thanks and Inspiration

I'm in a bad spot right now.  To help avoid a "downer" blog - which seem to be too often lately - I'm taking a moment to try to think of a lot things I'm grateful for:

• I have my soul mate as my spouse. Mike and I honestly say the same thing at the same time quite often. We can finish sentences, we want to cuddle at the same time, we can be apart or do different activities and not feel left by the other.  I can never be grateful enough for him.
• My talents. I love that I can do a lot of things on my own. I do wish that I could do them more often but that's leading into some of the dark stuff, so let's avoid that part. I love that I can draw to express myself, I love to write, to do woodworking, metalworking, I can build things with my hands with many mediums, and love to sing.
• I have some pretty amazing friends. Friends that will do whatever they can for me, that go out of their way to see me smile, from watching the kids to sending surprises that mean a lot to me in the mail.
• My kids are sometimes exasperating but they are also a source of happiness. I get hugs, kisses, and "I love you"s often.
• I'm able to still do some things, even if I cannot do everything any longer.  I can still feel slightly useful as I am not bedridden.
• My cats and dog love me and give me cuddles. 
• I have a chemo regimen that appears to be working.
• I apparently inspire people to do good.  This one I want to talk more about for a second:

I have had a lot of people tell me ways they were inspired by my actions.  It has been from being their new selves after surgeries or other issues that made them have scars or marks that make them appear different than the average person to stepping up and helping another person.  One person stopped worrying about wearing a prosthetic breast because she saw me freely walking around with one breast (and the remaining breast made it extremely obvious I only had one).  In relation to that IDGAF attitude, others have stopped trying to hide scars or missing hair, etc, and told me it was because I gave them the inspiration to just care about how they saw themselves instead of how others might react.  Some have told me they cannot believe the amount of things I help come to fruition.  I helped save a retreat, I helped make welcome bags more full than they would have been, I organize events with little effort.  To me, it is little effort.  I can plan these things easily.  I know enough about Excel and Word that I can make things very simple.  I have an ancient version of Adobe Photoshop and I can work that thing to my needs extremely easily.  If I am going to be an inspiration, I want you to take away one thing from me.  This is why I do what I do.  This is what makes me want to do things for others, whether they know it is me or not:

If something needs to be done, do what you can.

Change does not happen by shrugging your shoulders.  Help does not come from twiddling thumbs.  You cannot help if you are too worried what others will think of you.  Follow your heart, it is speaking to you, it twinges when you know that you can do something to right a situation.  Be selfless sometimes, think of how happy you can make someone with something as simple as a small, inexpensive gift or by doing a selfless act.  Share your friends' fundraising efforts, share their attempts to go outside their safe zone, share their events, share their triumphs, help where you can.  Can you imagine a world where everyone tried to help when they knew they could?

Reality of It

A lot of people do not understand my life. They don't understand what is happening largely in part from the word “cure" going around the interwebs so often now. Let me break it down:

My cancer is now incurable. That is the opposite of curable, so you're aware. All your fucking miracle cures, secret recipes, wonder drugs, etc are not going to change that.

I live in perpetual fear that the pain I feel is the cancer growing or spreading. Once it stops responding to treatment, it will grow, it will spread. It will go to my brain or my liver or my lungs and take over. It is not “being negative” or looking to the darkside of things, this is the nature of my cancer.

My cancer is aggressive. That is good and bad. Aggressive cancers grow and take over quick (the bad part). Aggressive cancers also tend to respond well to chemotherapy (the good part). Chemo tends to attack fast growing cells, that's why aggressive cancers sometimes respond well whereas slow growing cancers can be more resistant to chemo.

Since my cancer is aggressive, my prognosis could change in a heart beat. Literally. The cancer is on my blood, my heart is pumping it around. One day I could be fine, the next day it may have spread.

This is my reality. When I say that I needed to start a GoFundMe because I want to not leave my family in debt and want to do fun things with the kids, I'm saying that because I really am on the precipice. I could fall in any moment. I don't want to die. I want to see my kids grow up. I want to see my 25th anniversary. I want to have a 40th birthday. But that might never happen.

I'm writing this from a bed in emergency, waiting for a ct scan because my cancer might be moving and we're trying to figure it out. Life changes in an instant. I'm trying to make my life last as long as possible. But cancer is as much of a bitch as I am.

Journal Entries

I'm going to start a new thing and see how it goes.  I have a new journal thanks to Compassion That Compels and I will be occasionally posting on this blog the entries.  Names may be abbreviated or changed for privacy sake, but I will be otherwise keeping the posts the same as the written entries.  It will give a further glimpse into my life and I find I still prefer writing by hand late at night, when I normally write in a journal.

Stay tuned...

Post Conference 2018

Mike and I were privileged enough to attend the 2018 Young Adult Cancer Canada Survivor Conference at the beginning of the month.  We had the chance to connect with old friends and make new friends as 99 survivors/supporters were in attendance.  I was able to help with making sure everyone had some fun by raising funds for a social event, karaoke (YACCaraoke), at Karaoke Kops. It was the hottest spot in St John's that night!  Huge thanks and much gratitude to the staff and owners of Karaoke Kops!

We were able to attend workshops and discuss matters that have come to light in the past year.  There was a panel, a Big Cancer Hook Up, and many presenters.  Saying the conference was a success for YACC and their ideals is a gross understatement.

The aftermath of conference is one thing that is never easy to deal with.  It's the pain of having to leave your friends for at least another year.  It's the fear of how many friends will die between now and next year.  It's the fear that this was your last year.  That's the thing about making connections: they're awesome and help alleviate your loneliness and fear of isolation, but you are brought into this circle because of a terminal illness, some of us get to stay around longer than others.  I could never say I regret any of the connections I've made through YACC.  I've cherished every friend that I've met through them.  I weep at their death because they had so much that they wished they could do and I weep for the hole that their absence leaves in my heart.  But they are still in my heart.  Always thought of and fondly remembered.

I try to soak in the energy that many gave over the conference.  The laughter and joyful jubilation that saturated us.  To take the tears that were shed in stride and try to remember it is for my loss I cry, that their pain is finished.  I giggle at the jokes we told, I hold dear the smiles and happy faces, I recall the strong hugs and high fives.

I will try to spread the happy.  I will try to remember it is okay to cry.

 

Me and Mike on the bus for one of the social events at conference

Love that we had the opportunity to fly with Porter Airlines

After Shock

Something that comes up with a lot of "lifers" or "thrivers" or those with terminal cancer* is that things are quite different from those with early stage or curable cancers.  We're the taboo cancer, the cancers that don't go away for good after our treatment.  Treatment is for the rest of our life, whether that is days, months, or years.  As much as people want to support you, the mass populace is all gun-ho to help the second you are initially diagnosed.  That's when they understand you'll be starting treatments so you will be sick or tired or busy with multiple appointments with multiple doctors.  Add a couple months and they seem to lose interest in assisting you with what really dogs many young adults with cancer: finances.  They are used to you having cancer now.  This is the After Shock of Diagnosis.

Cancer costs a lot.  It can cost your life, but before that there are expenses like: treatments that your province/insurance does not cover, parking, gas to get to the never ending appointments, transit passes, car repairs/maintenance from having to drive to those appointments, meals when you're just too weak or depressed to cook, childcare, and so much more.  All these things add up quick and your debt gets larger and larger.  A lot of young adults get diagnosed before they even thought of getting life insurance or they are diagnosed before the probation period and the coverage is canceled.  That means once we're gone our families will be left in debt.

I have killed my pride and tried the gofundme route.  I have asked for help.  I am fortunate that I have a few friends that are sticking by me but it's the same ones each time and I cannot see them go in debt trying to help me.  Will not rob Peter to pay Paul.  This is something that isn't going to stop, at least not until I die.  I really am running out of options, everything I'm attempting fails.  I cannot work due to injury.  I cannot sell my art.  I cannot sell my possessions.  I cannot get a gofundme to work.  Where do I go now?

Where am I going with this?  No idea.  I'm angry and frustrated.  I needed to complain. 

*A lot of people use different labels for living with cancer

Death - *some not so delightful language included

It's that taboo thing that most people will zone out the second you start to try to talk about.  It's that dark, looming shadow in the back of your head that comes out when you're at your lowest.  Death is something that we all will come to face but that no one likes to talk about.  I have to think about it.  A lot of my friends do.  We're terminal.  Despite all the other issues we may face, we will either die from our cancer, an accident, or if we're lucky from old age.

No what sucks?  I got cancer in my twenties, I never got life insurance then.  I was waiting for my 5 year mark of no cancer to try for something after having cancer, but at 4.5 years my cancer came back.  Now I'm terminal.  Does that mean I'll die tomorrow?  Hopefully not.  Does it mean I'll die in three years, who knows?  But I'm living with cancer.  I'm living with a ticking time bomb that no one has the defuse code for.  As far as insurance companies care, I'm already dead, they don't want to touch me.

So I have a gofundme going, I thought if I could get our bills down.  If I could take that away from the cancer, I would not feel like such an ass when it comes my time.  Cancer expenses aren't just chemo and the pills to help you cope with it.  Cancer is gas money to the hospital for all appointments and scans.  Cancer is daycare so you don't have kids in tow while the oncologist explains that the cancer is showing an "evolution".  Cancer is eating away all your savings so that your family is left with nothing afterwards.  Cancer is not having the energy to do things normal young adults can do on their own.  Cancer is not being able to make food some days and needing to rely on frozen dinners or take out.  Cancer is asking so many people for help that all pride is gone.  Cancer is bawling in a private place because you're tired of being tired, sore, and feeling like a burden.  So yeah...  I started the gofundme to try to make some of that horrible feeling go away.  Unfortunately it's not doing so great.  It was at first, but it's died down now.  It made one month less horrible, so I'm thankful for that.

Cancer is also sitting on the couch watching a show with the Grim Reaper eating popcorn as they watch the cells in your body trying to take over.

I will die.  Will I go to Heaven?  Maybe the afterlife is a bit different.  I believe Albert Einstein was the one that theorized that energy cannot truly die, it continues, it spreads out into the world and space.  The human brain is energy, all those electrical connections that make up you and your thoughts.  Perhaps that is your soul, the energy that makes up your brain, so when your body is returning to the soil, your energy, your soul, leaves your brain and drifts off.  Do you retain your consciousness?  Who knows.

This post is also inspired by getting too many emails and messages that people have died that I know.  Some from cancer, some chose their day to die and had their assisted deaths, some committed suicide, and some from horrible accidents or other health issues.  Either way, I'm surrounded by death.  It's around me and within me.  This is what I live with every day.  Don't take this as a sign that I'll be looking to make an end, cancer chose the wrong bitch to fuck with.  I like life.  I am married to my soulmate, I have great kids that are also assholes at times but I love them more than I can explain, I like cheesecake and rum too much to give them up forever like that.

I'm not sure how to end this post.  I'm not sure where I'm going from here, but I've put my thoughts out there, into the interwebs.  Farewell words I've typed, perhaps you will do some good out there.

Why Should You Shave for the Brave?

Wondering if you should participate in a Shave for the Brave?  Here's a few reasons to sign up for the razor:

• A shaved head is a great way to cool off in the summer
• Savings: think of all the money you won't be spending on shampoo!
• Less to pack. When traveling you won't need to remember a brush or comb
• No hair to hide your funky and classy earrings
• Saves time getting ready in the morning, no brushing or styling hair
• Shaving for the Brave means that other people are paying for you to get your hair cut
• As your hair grows in you can try funky colours and if you don't like them, you can just shave it off, again.
• Bald is beautiful: Just look at these ladies to name a few. Of course who could deny the beauty of Lupita Nyong'o or Danai Gurira
• Many women see bald men as attractive, just look at Dwayne Johnson, Bruce Willis, and Jason Statham
• You can cosplay a lot more characters
• Wigs look a lot better when you wear them without hair underneath

And one of the biggest and best reasons to Shave for the Brave:

All the young adult Canadians that you'll help connect through Young Adult Cancer Canada's conferences and retreats.  It'll give you the warm fuzzies ;)