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.
Life with breast cancer and the other trials I encounter. Analogies and my rants :P
Friday, 28 December 2018
Thursday, 11 October 2018
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.
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.
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Friday, 27 July 2018
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
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
Wednesday, 11 July 2018
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
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
Labels:
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Monday, 9 July 2018
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:
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?
- 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:
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?
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Thursday, 28 June 2018
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.
Monday, 25 June 2018
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...
Stay tuned...
Sunday, 24 June 2018
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.
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 |
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Thursday, 31 May 2018
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
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
Wednesday, 9 May 2018
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.
Tuesday, 1 May 2018
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:
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 ;)
- 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
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 ;)
Monday, 30 April 2018
Shaving and Spring Fair for YACC
What a whirl-wind this weekend was. We had the Spring Fair for YACC and the Shave for the Brave. My son and several others shaved their hair for Young Adult Cancer Canada. I'm happy to say that the group raised over $2,000 together. We had the Spring Fair to raise funds for social events at the YACC Survivor Conference this June. The total for that has been $600 raised. I cannot thank everyone that helped me and stepped up, asking if there was anything they could do. I admit I'm extremely sore after putting on the fair and shave but I'll gladly take being in pain for several days if it means fundraising for YACC and getting the word out that the organization exists.
There's still time to donate to either event. If you want it to go towards the Shave for the Brave please donate using THIS LINK, it's for Archer's Team. If you want to host your own Shave, please check out the link in the first paragraph.
If you'd like to donate towards the social events, either send me a message or contact YACC and let them know that's what you want the funds to go towards. There's a link for them in the first paragraph, too.
I hope that we get to do this form of fundraiser again, the vendors said they had fun, many were happy to hear about an organization like YACC, and it was great to see the smiles and hear the laughter of people working towards something they believed in. Take care guys. xoxo
There's still time to donate to either event. If you want it to go towards the Shave for the Brave please donate using THIS LINK, it's for Archer's Team. If you want to host your own Shave, please check out the link in the first paragraph.
If you'd like to donate towards the social events, either send me a message or contact YACC and let them know that's what you want the funds to go towards. There's a link for them in the first paragraph, too.
I hope that we get to do this form of fundraiser again, the vendors said they had fun, many were happy to hear about an organization like YACC, and it was great to see the smiles and hear the laughter of people working towards something they believed in. Take care guys. xoxo
Friday, 13 April 2018
Bit More Explaination
I started a GoFundMe after saying "no" to it for a while. I want to get out why I was saying "no" at first. For one, a friend tried once before for me when the cancer came back and it was a flop. This seems to be the norm for any personal campaigns for my family. It's just the way it works. Maybe it's because we're used to working for everything. I was working in elementary school as a newspaper carrier, I had a pet sitting business, I made crafts. One I could fully work, I had a job. Then another job, and sometimes more. I did manual labour, tech work, I did it all because I like earning my money. I'm limited now. Very limited. I've tried to do more but physically cannot. I need to accept that.
Now that I'm back on chemo, I tire quicker and quicker each dose. I have three awesome kids that can be tyrants because they're all under 9 years old, they're kids, they act like kids. The average mother will agree that the most agreeable child can become a tempest of doom in a heart beat. Kids are growing, they get frustrated, they are learning how to express themselves, it does not always mean they found the proper way to do that yet.
My husband had started his career before we met and long before we married. We had lots of plans and we could do them all on our own until someone caused a car collision and I was permanently injured. Now I can't do a lot of the stuff I once could. Then cancer compounded onto that. This month alone, I have eleven (11) doctor's appointments and I'll be having a bone scan. Bone scans take 4-6 hours depending on a plethora of variables. I need child care for two kids for all of those appointments, I need gas to travel the average of 30km to the appointments (one way), I need to pay for parking (but I do get it half price at least), I have to pay for my prescriptions including chemo, thank heavens my husband's plan covers them. (Before anyone asks I have to pay for my chemo because it's dispensed at a pharmacy outside of the hospital).
I'm the one that does most of the cooking. Why? My dad taught me how to cook and bake and I like doing it. My husband does try to help when he can, he really loves helping with chocolate chip cookies, but I'm the cook in the family, that's our life. So I get tired and fall asleep because my body can't take it any longer, what happens then? If there's leftovers, they're used, if not it's one of two things: something my hubby is comfortable making, or take out. Three meals a day and snacks can add up on my tired body. We have been doing our best to make this strain less on me, but it still acts up often - who knew you had to eat every day several times! (HA!)
I have days I can't walk far because of pain. I have days I can't move without feeling like parts will shatter off my body. I have stabbing pain from the cancer sometimes. All this stuff is adding up. This is life with disabilities and cancer. Some are REALLY good a hiding the issues they face and, honestly, we generally pride ourselves in appearing "normal". I guess it's a case of masks. Today my mask will not show my back pain is already a 6 on the scale of 1 to 10. Today my mask will not show that my depression is kicking in. Today my mask will not show the tears I cried because I feel like I'm failing.
This is definitely now a rant... So this is part of the why I finally said okay to the campaign: It doesn't help my family if I'm prideful. I cannot do what I used to. I need help, I need to ask. I just hope that people will step up like they've offered before, and if nothing else SHARE the campaign.
To find the GoFundMe that I started CLICK HERE
I'm really so tired that I'm not even proof reading this before posting. My youngest is sick and I got to come back to finish this after I picked him up from daycare, got his fever down, fed him, and got him to have a nap. I'm tired. I'm going to have a nap and worry about supper after. This is my day
Now that I'm back on chemo, I tire quicker and quicker each dose. I have three awesome kids that can be tyrants because they're all under 9 years old, they're kids, they act like kids. The average mother will agree that the most agreeable child can become a tempest of doom in a heart beat. Kids are growing, they get frustrated, they are learning how to express themselves, it does not always mean they found the proper way to do that yet.
My husband had started his career before we met and long before we married. We had lots of plans and we could do them all on our own until someone caused a car collision and I was permanently injured. Now I can't do a lot of the stuff I once could. Then cancer compounded onto that. This month alone, I have eleven (11) doctor's appointments and I'll be having a bone scan. Bone scans take 4-6 hours depending on a plethora of variables. I need child care for two kids for all of those appointments, I need gas to travel the average of 30km to the appointments (one way), I need to pay for parking (but I do get it half price at least), I have to pay for my prescriptions including chemo, thank heavens my husband's plan covers them. (Before anyone asks I have to pay for my chemo because it's dispensed at a pharmacy outside of the hospital).
I'm the one that does most of the cooking. Why? My dad taught me how to cook and bake and I like doing it. My husband does try to help when he can, he really loves helping with chocolate chip cookies, but I'm the cook in the family, that's our life. So I get tired and fall asleep because my body can't take it any longer, what happens then? If there's leftovers, they're used, if not it's one of two things: something my hubby is comfortable making, or take out. Three meals a day and snacks can add up on my tired body. We have been doing our best to make this strain less on me, but it still acts up often - who knew you had to eat every day several times! (HA!)
I have days I can't walk far because of pain. I have days I can't move without feeling like parts will shatter off my body. I have stabbing pain from the cancer sometimes. All this stuff is adding up. This is life with disabilities and cancer. Some are REALLY good a hiding the issues they face and, honestly, we generally pride ourselves in appearing "normal". I guess it's a case of masks. Today my mask will not show my back pain is already a 6 on the scale of 1 to 10. Today my mask will not show that my depression is kicking in. Today my mask will not show the tears I cried because I feel like I'm failing.
This is definitely now a rant... So this is part of the why I finally said okay to the campaign: It doesn't help my family if I'm prideful. I cannot do what I used to. I need help, I need to ask. I just hope that people will step up like they've offered before, and if nothing else SHARE the campaign.
To find the GoFundMe that I started CLICK HERE
I'm really so tired that I'm not even proof reading this before posting. My youngest is sick and I got to come back to finish this after I picked him up from daycare, got his fever down, fed him, and got him to have a nap. I'm tired. I'm going to have a nap and worry about supper after. This is my day
Labels:
cancer,
control,
depression,
disabled,
feelings,
friends,
heart,
mask,
metastatic,
rant,
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Thursday, 12 April 2018
I give up, I need help
I have swallowed the last of my pride. I have started up a GoFundMe for myself. I am tired of cancer sucking all the life and money out of my family. If you can donate, awesome, if not, please share. Thanks
Support Julie Living With Cancer Here
Support Julie Living With Cancer Here
Labels:
cancer,
depression,
feelings,
heart,
metastatic,
rant,
support
Tuesday, 20 March 2018
Happy Bday Hubby
This post may seem like a "#humblebrag", but I'm starting to think that it's something that more people need to be aware of.
My hubby is having his bday soon. He's been by my side through more crap than most couples need to deal with in the first few years of their marriage. I wanted to put out into the interwebs what kind of man he is.
Before my husband I had heard of people saying they "married their best friend" and I didn't fully know how that felt. I had been married before and it was not a good situation. It took me a long time to realize what that relationship was. This marriage that I'm in now is completely different. I can say that I married my bestfriend. A part of our relationship is so similar to what I have with those that I have long called my bestfriends. We can laugh, cry, complain, be smart-assed, or just hang out doing absolutely nothing, and be content together. We love to play video games together, we can read books on the couch together and not say a word, we can watch movies together because we have the same tastes for the most part. No, we're not exactly alike, if one of us wants to do something that other doesn't, we don't force it on the other. We just do our own thing at that point, it's not a big deal.
Our relationship isn't just a PG life, we are compatible lovers. It's taboo to say stuff like that in our society but taboos can suck it - we're married, we love each other, we have sex. That should be painfully evident since we have three kids. Throughout our entire relationship, we've been able to enjoy our play-time together. We can both say that we have fun with sex and neither of us ever pressures the other into having sex - something I didn't understand was possible for a long time.
Hubby is a good father, too. He takes care of our kids, he's not just a couch potato, even though he's worked all day. He plays with the kids, helps with discipline, teaches the kids, hugs them, and kisses them. He is always there when they need him, but he doesn't do everything so they can learn some independence. I know that no matter what, he is a responsible parent, a gentle hand but firm teacher.
This is our relationship. We're able to be by ourselves and be happy. We're able to love each and not feel forced into it. We're able to be apart and not fear what the other is doing, we miss each other a lot, but we're not able to feel that the other is up to something. Here's the part many do not understand about us - we don't fight. We don't. We've never yelled at each other. We don't argue. We've disagreed before but it was a conversation, not an argument. You may think I'm lying, but I'm not.
I think that there's a lot of compromise in relationships, and that's okay to an extent. I found I compromised a lot and it lead to bad relationships. I finally said that I would not change me for someone and found someone that never once asked me to. I found someone that I didn't need to wear a mask with, someone that doesn't need me to bend to their will to keep them happy. I've been in bad relationships and learned over a long time that I was dealing with issues because of compromising myself for my partner. Do I think any of my bad relationships would have lasted after I was permanently injured from the car collision? No. Do I think any of my bad relationships would have lasted after my cancer diagnoses? Hell no. Not all relationships can take that kind of stress, especially with kids in the mix. I'm extremely lucky, and I know it. My hubby loves me no matter how many scars I have, no matter what parts of me get removed or rebuilt to not-the-same reconstruction, no matter if I'm really sick or able to function for the day.
What I'm trying to say, interwebs, is that even though I went through the bad relationships, I now finally understand what a relationship with a lover, partner, spouse is supposed to be. Our relationship isn't 50/50, we're both very present in it. I know that if he has a problem, he will talk to me. He knows that if I have a problem, I will talk to him. I know that every night that we get to go to bed together we'll fall asleep cuddled, with our last words to each other being, "Love you, goodnight sexy/handsome". My greatest wish is for everyone to one day know this kind of relationship.
Happy bday, handsome. Love every moment with you xoxo
My hubby is having his bday soon. He's been by my side through more crap than most couples need to deal with in the first few years of their marriage. I wanted to put out into the interwebs what kind of man he is.
Before my husband I had heard of people saying they "married their best friend" and I didn't fully know how that felt. I had been married before and it was not a good situation. It took me a long time to realize what that relationship was. This marriage that I'm in now is completely different. I can say that I married my bestfriend. A part of our relationship is so similar to what I have with those that I have long called my bestfriends. We can laugh, cry, complain, be smart-assed, or just hang out doing absolutely nothing, and be content together. We love to play video games together, we can read books on the couch together and not say a word, we can watch movies together because we have the same tastes for the most part. No, we're not exactly alike, if one of us wants to do something that other doesn't, we don't force it on the other. We just do our own thing at that point, it's not a big deal.
Our relationship isn't just a PG life, we are compatible lovers. It's taboo to say stuff like that in our society but taboos can suck it - we're married, we love each other, we have sex. That should be painfully evident since we have three kids. Throughout our entire relationship, we've been able to enjoy our play-time together. We can both say that we have fun with sex and neither of us ever pressures the other into having sex - something I didn't understand was possible for a long time.
Hubby is a good father, too. He takes care of our kids, he's not just a couch potato, even though he's worked all day. He plays with the kids, helps with discipline, teaches the kids, hugs them, and kisses them. He is always there when they need him, but he doesn't do everything so they can learn some independence. I know that no matter what, he is a responsible parent, a gentle hand but firm teacher.
This is our relationship. We're able to be by ourselves and be happy. We're able to love each and not feel forced into it. We're able to be apart and not fear what the other is doing, we miss each other a lot, but we're not able to feel that the other is up to something. Here's the part many do not understand about us - we don't fight. We don't. We've never yelled at each other. We don't argue. We've disagreed before but it was a conversation, not an argument. You may think I'm lying, but I'm not.
I think that there's a lot of compromise in relationships, and that's okay to an extent. I found I compromised a lot and it lead to bad relationships. I finally said that I would not change me for someone and found someone that never once asked me to. I found someone that I didn't need to wear a mask with, someone that doesn't need me to bend to their will to keep them happy. I've been in bad relationships and learned over a long time that I was dealing with issues because of compromising myself for my partner. Do I think any of my bad relationships would have lasted after I was permanently injured from the car collision? No. Do I think any of my bad relationships would have lasted after my cancer diagnoses? Hell no. Not all relationships can take that kind of stress, especially with kids in the mix. I'm extremely lucky, and I know it. My hubby loves me no matter how many scars I have, no matter what parts of me get removed or rebuilt to not-the-same reconstruction, no matter if I'm really sick or able to function for the day.
What I'm trying to say, interwebs, is that even though I went through the bad relationships, I now finally understand what a relationship with a lover, partner, spouse is supposed to be. Our relationship isn't 50/50, we're both very present in it. I know that if he has a problem, he will talk to me. He knows that if I have a problem, I will talk to him. I know that every night that we get to go to bed together we'll fall asleep cuddled, with our last words to each other being, "Love you, goodnight sexy/handsome". My greatest wish is for everyone to one day know this kind of relationship.
Happy bday, handsome. Love every moment with you xoxo
Thursday, 15 March 2018
Reconstruction Rant
Inspired by a question on a breast cancer group, I have some words about reconstruction after finding out you have breast cancer - no matter the stage. In no particular order:
-It's okay to be scared even after you thought you were ready. This is a surgery, no matter if you chose to have the TRAM, DIEP, GAP, Expanders over or under muscle, or Lat Dorsi, it's scary and you're allowed to be afraid.
-You're allowed to want to do this so you can feel some normalcy in your life. You're not being vain, you're not "getting a free boob job", you are trying to gain some control of an uncontrollable situation and that's perfectly fine
-There's a lot of self appointed "Google Doctors" out there that are going to try to spread fear and misinformation to you. TRUST your doctors, they're the ones that went to school for years and years to become professionals. If you have legitimate concerns even after talking with a doctor, ask for a second opinion from a medical professional, not a non doctorate quack
-Yes, there will be pain, take your prescriptions on time. I had some always at my bedside so I could take them immediately after napping. Don't be proud, ask for help, you had surgery, you wouldn't expect someone that had knee surgery to do everything an hour after they leave the hospital. Give yourself credit, you are doing something, you are healing - that takes a lot out of you. REST
-There's always the risk it will fail. Know your options. If it does fail, what is your back up. I knew that my expander would likely fail, but knew that if it did I could still have the Lat Dorsi, TRAM, DIEP, or GAP if I wanted. Knowing that made living with the possibility that it could fail more tolerable.
-There's more than one type of implant. There's silicone (which is much safer now), saline, plus there's shaped ones like a tear drop or rounds, there's smooth and rough edged. They all have their plus' and minus', know your options
-Stock your freezer or set up help with making foods for the week after your surgery. There's things like https://www.mealtrain.com that you can use to help organize friends and family with meals. Best of all it's free.
-Ask for help with kids. Yes, you are going to be exhausted from healing. Read and watch shows with your kids but have someone that can take them out for play dates or even just stay in your house so you can rest. Remember: REST
-Horde pillows to help you find a comfortable sleeping position. Make adjustments, find your happy zone
-Know what lies ahead for your journey. If you're doing expanders, there will be an exchange for permanent implants unless they use the type that can be left in.
-Your new breasts may not look 100% breasty. Know that ahead of time. You may look immaculate, there may be scar tissue or healing issues. It's a gamble, like any alteration to your body. Know the risks, talk with your docs. Be blunt, you're permitted to know all the risks.
-If you your implants fail, see if you can keep the implant - they make for great stress toys
-It's okay to be scared even after you thought you were ready. This is a surgery, no matter if you chose to have the TRAM, DIEP, GAP, Expanders over or under muscle, or Lat Dorsi, it's scary and you're allowed to be afraid.
-You're allowed to want to do this so you can feel some normalcy in your life. You're not being vain, you're not "getting a free boob job", you are trying to gain some control of an uncontrollable situation and that's perfectly fine
-There's a lot of self appointed "Google Doctors" out there that are going to try to spread fear and misinformation to you. TRUST your doctors, they're the ones that went to school for years and years to become professionals. If you have legitimate concerns even after talking with a doctor, ask for a second opinion from a medical professional, not a non doctorate quack
-Yes, there will be pain, take your prescriptions on time. I had some always at my bedside so I could take them immediately after napping. Don't be proud, ask for help, you had surgery, you wouldn't expect someone that had knee surgery to do everything an hour after they leave the hospital. Give yourself credit, you are doing something, you are healing - that takes a lot out of you. REST
-There's always the risk it will fail. Know your options. If it does fail, what is your back up. I knew that my expander would likely fail, but knew that if it did I could still have the Lat Dorsi, TRAM, DIEP, or GAP if I wanted. Knowing that made living with the possibility that it could fail more tolerable.
-There's more than one type of implant. There's silicone (which is much safer now), saline, plus there's shaped ones like a tear drop or rounds, there's smooth and rough edged. They all have their plus' and minus', know your options
-Stock your freezer or set up help with making foods for the week after your surgery. There's things like https://www.mealtrain.com that you can use to help organize friends and family with meals. Best of all it's free.
-Ask for help with kids. Yes, you are going to be exhausted from healing. Read and watch shows with your kids but have someone that can take them out for play dates or even just stay in your house so you can rest. Remember: REST
-Horde pillows to help you find a comfortable sleeping position. Make adjustments, find your happy zone
-Know what lies ahead for your journey. If you're doing expanders, there will be an exchange for permanent implants unless they use the type that can be left in.
-Your new breasts may not look 100% breasty. Know that ahead of time. You may look immaculate, there may be scar tissue or healing issues. It's a gamble, like any alteration to your body. Know the risks, talk with your docs. Be blunt, you're permitted to know all the risks.
-If you your implants fail, see if you can keep the implant - they make for great stress toys
Thursday, 15 February 2018
33 months
Today is a hard day. I have come to the conclusion that February 15th and I do not have a healthy relationship. February 15th is the date for both of my mastectomies, but today is not difficult because of that. Today is harder than some days because this is 33 months from the time we discovered my cancer had metastasized. In the US studies, the average life span for stage 4 breast cancer patients is 33 months. We do not have any proper statistics, that I can find, that are for Canadians. And even if we look fully at the US studies, they do not include people like me, they are only for people diagnosed stage 4 at the start of their breast cancer diagnosis.
I find today hard because there was a chance I would not make it here. Statistics said I might not see my son turn 3 years old. They said that I might not see my daughter off to her first day of school. I definitely would not see my eldest go to jr high, if this had been true statistics for my situation. Even though these numbers that we are told after diagnosis are from the past, they still hit me hard. I know many that have lived passed the 33 month mark, but I know a lot that have not even made 12 months. Some did not even make 6 months.
There are a lot of emotions at play today. I am happy to be here, I am tired because of the chemotherapy, I am pissed at all the snake oil salesmen and misinformation pushers that pounce on unsuspecting cancer patients, I am grateful for my chemo that has helped me be here today, I am thankful for my medical team, I am sad for all my friends that are not here, today.
I will have a lot of ups and downs today. I just need to see the day through, but now I wonder if I am on borrowed time.
I find today hard because there was a chance I would not make it here. Statistics said I might not see my son turn 3 years old. They said that I might not see my daughter off to her first day of school. I definitely would not see my eldest go to jr high, if this had been true statistics for my situation. Even though these numbers that we are told after diagnosis are from the past, they still hit me hard. I know many that have lived passed the 33 month mark, but I know a lot that have not even made 12 months. Some did not even make 6 months.
There are a lot of emotions at play today. I am happy to be here, I am tired because of the chemotherapy, I am pissed at all the snake oil salesmen and misinformation pushers that pounce on unsuspecting cancer patients, I am grateful for my chemo that has helped me be here today, I am thankful for my medical team, I am sad for all my friends that are not here, today.
I will have a lot of ups and downs today. I just need to see the day through, but now I wonder if I am on borrowed time.
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