Tag: metastatic breast cancer now what

Mind over mammory: Mastectomy

Second verse, different from the first! Another post to help those who are going through a mastectomy but this one is more focused on what your mind might be going through and a couple of tips.  This is just my experience and everyone is different.

My surgery was unexpected, as I said in my Bye Bye Boobie post, I was always told it was too late for surgery so in my mind a mastectomy was never in my future. As always with this disease, it is wise to always keep your mind open because anything can happen. It is so unpredictable and always ongoing and growing. Remember nothing works forever but also remember to enjoy the “pauses”! As the disease progresses treatments get harder and harder. I think that was a part of my sadness with this surgery, new treatment because of progression. Every time this happens I am reminded at how little control I have and my mortality is put in check.

Psychologically this is a hard surgery, no one looks forward to losing a breast and I found that the time before surgery was the hardest, I thank God that I only had a week to think about it. Honestly, it was a very long week. I also highly recommend you stay away from googling pictures, trust me from experience. Two days before my surgery I was trying to find pics of women that had their surgeons manipulate “fake” cleavage from breast tissue but was only horrified and scared to death of what I was going to look like. I swear they only post the most distressful pics out there!! DO NOT look to the internet pics for reassurance!!  Try not to think about what will happen or what it will look like after, it will just add unneeded stress to your recovery!  The reality is you are losing a breast and your chest will look different, accept it and it will make the before and after easier. Focus mostly on your health, there is a reason for this removal, it will bring you life! My biggest advice, be brave and stay strong, you will get through it!

As I said before the waiting is the hardest. In my opinion  do whatever makes you feel better, fuck it, this is hard, so hard.  Get a pedicure before you go in, go out for a great dinner with friends and anything else that brings you happiness.   My wonderful friends helped me get a boudoir photo shoot. This was so amazing and I highly recommend it. It was such a great way to have some beautiful photos taken before your body changes. I decided to go tits out and give my husband some shots to remember my awesome boobs! I also decided after 3 years of fighting this bitch, to take the time to relax and recover at my own pace! No guilt just recover in peace!!

Getting out and about was a problem I didn’t think about beforehand. I couldn’t drive, I have a manual car and my mastectomy happened to be on my gear shift side. This was a big challenge for me, not being able to even leave the house if I wanted to, at the mercy of others but not wanting to bother anyone to take me anywhere, I already feel like a giant burden and I didn’t want to be a bigger one. I did feel a little isolated and lonely but sadly that already comes with the disease.

I also found it was difficult to look at my chest, avoiding a direct long look, not wanting to see it but slowly trying to accept the unavoidable reality.  I would take quick peeks every now and then, and still every time I was surprised by what I saw, that’s not me is it, FUCK! When I put my hand to my chest, so familiar it used to feel. As it went closer and closer with anxious curiosity, expecting to feel my breast, it hesitated as the unfamiliar empty space was entered. This empty space… it means again cancer is winning, for now! it means I feel less than a woman, again! it means forever I will have this emptiness.

So because I only had one boob removed, my remaining boob still needs a bra… I left the house on a couple of occasions feeling awkward. I did not buy anything to wear post surgical because I really was not able to think about the after and partly because I didn’t know what the hell to buy. My surgical site was so tender and I couldn’t wear anything I had at home so off into the world au naturel it was! My one side obviously empty and the other boob flapping in the wind. I felt obvious and vulnerable, again cancer announcing to the world, this body is my bitch! Now here is where planning ahead would have really come in handy. There is a website for knitted knockers! It takes a little while to get them so I suggest ordering before you go in for surgery. These things are amazing and free!!!! Check out the website for these awesome confidence building boobies!!!  http://www.knittedknockerscanada.com/

It has been 3 weeks now and my physical healing is going great! My mental one is still in the works but it is a lot easier to accept now than it was, like anything in life change needs time and time heals! I bought a bra and have stuffed it with socks lol! I am still waiting for my knitted knocker. I have also looked into prosthesis. I have heard they can be uncomfortable to wear and are quite expensive but do whatever you need to do to feel better!  Ontario does have a grant for a chunk of the cost if you are interested here is the link  https://www.ontario.ca/page/breast-prostheses-and-artificial-limbs

I am irritated about future clothes shopping! Trying to figure out how to camouflage my cockeyed chest for the rest of my life. I have already had a lifetime of trying to conceal my fat and now I have to fabricate the illusion of “normal” breasts!

I wonder if my golf swing will improve! 😉
Today I will own it! Battle wounds and battle scars, we all have them let us not give them the power to define us or rule our lives! Whatever life throws at us remember just carry on my soul sisters and brothers we are alive to fight for another day!!!

Laughter, life and love to all xox

 

 

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How the mind changes…

This post is definitely a ramble, but hey the title of my blog already warned you!!! 😉

Things that are important now differ from what was important before. Sad but true story- I was driving from my friend Jenn’s house one day and decide to try a different route home. She hadn’t lived their very long and I was testing drive times. Anyhoo…along this particular street is a cemetery, now I know the cemetery had been there but here is what is strange. They had a big advertising sign out front featuring a grand opening of their brand new crematorium! I got (truly and sadly) excited and slowed down to read it saying out loud “ohhhh that’s cool, I need to remember this place… Just an example of how different the mind can change after a cancer diagnosis.

Cancer can shift your outlook forever and in a deep way. You look at things differently, life is not what it used to be, what was important is not anymore and what we barely noticed is most prominent. we speak about sickness and death in almost a lighter way too, trust me this makes people VERY uncomfortable.

Funny thought, we complain about what stupid things non-cancer people say to cancer peeps but seriously think about some of the things we cancer people may have said that shock, hurt or make someone feel bad or even stupid. “I am going to lose my hair!”  “I am so tired!””Well, I am dying!” “It’s not curable!” “Fuck neuropathy!” “I am in so much pain!” “I feel sick everyday!” “I hate chemo!” “I signed my end of life papers!” “I am glad to hear he/she was cured, but that is not the kind of cancer I have!” “Cancer sucks!””Don’t you hate it when you get diarrhea from chemo!” “Anemia sucks balls!” “So I keep puking my guts out…” These statements are not setting our loved one up for great success! It would hurt my heart if I had to hear about the terrible things my person was going through! Then, it could also be really annoying, who wants to listen to someone ALWAYS telling someone how horrible their life is!!! Just sayin’ we need to recognize my fellow cancer army , we are as annoying as they are!!!!! 

We are in a different world they couldn’t possibly understand and we need to cut some slack! They are just want to be reassuring or supportive and they don’t know quite how to do it! Try to remember what we would have said before the diagnosis. I would have said more than half of the things people have said to me! I may have already inserted my foot into mouth many times…oops.  No one really understands until they have been here/there, whether as a patient,sister,husband,friend it is hard to not be offended or roll our eyes.

One thing for sure, cancer people can make non-cancer people feel uncomfortable and annoyed and non-cancer people can offend and annoy non-cancer people!

Just love one another and be patient and kind to all!!!

Much love Krista xox

The Phoenix

Nor shall this peace sleep with her; but as when
The bird of wonder dies, the maiden phoenix,
Her ashes new create another heir
As great in admiration as herself;
So shall she leave her blessedness to one,
When heaven shall call her from this cloud of darkness,
Who from the sacred ashes of her honour
Shall star-like rise as great in fame as she was,
And so stand fix’d.

I have always been fascinated by this mythical bird and it’s magic. Always felt, no matter how many times I may go down, I will regenerate and rise up fierce and strong. Now more than ever, I need this magic.

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Life with Chemo, a helpful list!

So there are many kinds of chemo and how chemo acts in each body is personal to everyone, this is what I have learned so far! Side effects that I may have, someone else may not have or it may be better or worse. A/C chemo was horrible, in a different way than my Paclitaxel is affecting me.

But here is what is common during chemo- we all have bad days!! During those days we need to be as comfortable as we can manage! Let go of the housework, kids, husbands, friends and family obligations, focus on you and feeling better! Television, movies etc. have placed a lot of undue stress on us who are going through chemo. They paint a picture of energetic,healthy, happy people that is unrealistic. We end up feeling guilty and worry ourselves that we can’t be like the people on television! I am here to tell you, IT IS OK! OK to feel shitty, tired, sick! Because that is what you are supposed to feel. We have been given toxic venom that bombards our bodies and kills without discrimination. It lacks the intelligence to chose between good or bad, it’s purpose, to destroy!!!

Here is an essential list of things chemo patients need:

  • A handheld fan
  • Comfortable clothes
  • Body lotion
  • Biotene mouth spray-so great to keep your mouth moist and fresh
  • Collagen in any form-for your face, chemo ages the fuck out of us!
  • Candy
  • Water-lots and lots drink it!!!!!
  • Tea
  • Slippers that come on and off easy or cozy socks, my god I love a good pair of cozy socks
  • Body spray-to smell better for company
  • Pain meds
  • a good book/magazines
  • puke bucket and wipes
  • Netflix
  • a heating pad-so love my heating pad!!!
  • Cozy pillow and blanket
  • Tablet/laptop/phone
  • a sleep cap/scarf-if  your bald
  • a little snack basket with crackers, ensure shakes and protein bars
  • CANCER CARD- a must have for all chemo goers!! Use it just enough, you don’t want to wear it out 😉
  •  child slave labour at your beck and call to replenish or fulfill yours needs

So that is the list I have compiled. Chemo sucks always! But these items can really help make your time spent in hell a little easier! Nap as required. Remember to move a little too, the body needs movement! Move to the couch for a change of scenery or move to the bathroom to take a bath maybe even move to the kitchen to make a tea.

Try to eat a little something every few hours. It can really help you feel better, even if you think you don’t want to eat. Stay away from foods you really love or want to eat after your treatment is done! It took me a while to want to eat bagels again. Taste-buds do change, sometimes you can’t taste anything your eating or things taste strange. I remember my A/C chemo, I cried eating Kraft Dinner, KRAFT DINNER! I couldn’t taste it and I cried! I stuck to things I had no expectations for but really, so sad that Kraft Dinner was ruined by chemo.

I also found that if I was having a really bad day and was stuck in bed, having my littles with me to watch a movie most comforting.

I also found a group called Chemo Angels! This group designates a volunteer “angel” to you and you receive letters, cards, encouragement and support from someone who knows and understands what you are going through. They just give an extra little pick me up during this hard time. Who doesn’t like getting a card in the mail!! If you know someone or are someone going through chemo or maybe even volunteer (they are looking for people to make a difference, I happen to know a few of you would make excellent chemo angels!), please check out their website and sign up! They are a wonderful and uplifting group I am so happy to have found!!   http://chemoangels.wixsite.com/chemo-angels-1

I hope you have found this to be helpful and I hope your bad chemo days pass quickly!!

Stay strong you got this!!!! Love y’all xo

The great divide

As I started to learn more about what metastatic breast cancer was, I noticed it seemed to be divided from all the other stages of breast cancer. I did not understand at that time why. I felt alone and like I did not fit in anywhere. At the support centre I was too young for the metastatic group and too advanced for the breast cancer group.  I had become a member of a club I had no wish to join.

The truth is there is more hope in the other stages, they are curable. All other stages are avoiding this stage and funding goes to them. I am thrilled at how far we have come to beat breast cancer with awareness, early detection, fundraising and research milestones. Life expectancy has risen and there are more and more survivors every day!  However, 20-30% of women will advance to MBC (metastatic breast cancer).

My ribbon is not PINK, I wish it was but sadly it is not.

The average percentage of all breast cancer funds raised that goes towards metastatic breast cancer is  2%

MBC is a death sentence. It is chronic and progressive. Treatments will never stop. The average life expectancy is 24-36 MONTHS, most die within 3 years. 20% of us live to 5 years. THESE STATISTICS HAVE NOT CHANGED IN 20 YEARS

Our mantra- STAGE 4 NEEDS MORE

We are known to be meta-thrivers, lifers, meta-vivors. We are not survivors we are fighters and live everyday striving to combat the life-taking disease occupying our bodies. I am proud now to be one of these people, finding strength, joy, love and one day a cure! I write this today in hopes to bring more awareness and understanding to this confusing disease.

I share this video, of a woman, mother, wife, friend and fighter! Her video epitomizes what most of us lifers feel and think everyday! The first time I saw it, I was overwhelmed with a connection to this stranger I had so much in common with, she understood me and I her! She took the words out of my heart and soul! Sadly she lost her battle January 12th at the age of 42, but her incredible message deserves to be shared to the world! Rest well Holley

 

 

I will repeat my vow to beat statistics and fight like a girl everyday! I will continue my battle to annihilate the uninvited squatter in my body! I hope help inform,guide and inspire! Above all I hope to live and someday see the cure!

 

Here are a few links:

http://ww5.komen.org/

http://www.mbcalliance.org/

http://mbcn.org/

 

 

The other side of the breast – A husband’s perspective

As you all know, for the last little while, my lovely wife, Krista has been blogging about her experiences with stage 4 breast cancer. I can see first hand that her blogs have been very therapeutic for her, and informative, and entertaining for her readers. I’m very proud of her.
When thinking of subjects to discuss, Krista and I decided it would be an interesting opportunity to deliver my experiences as a husband and father.
This whole journey has been a roller coaster of emotions. Krista and I can be very different people emotionally and in the way we process information.
The very beginning started with Krista and I laying in bed. Krista was showing me her breast and was concerned about abnormalities. I told her it’s likely nothing ( and I believed it was nothing ), and told her to get it checked. This is where it all starts. Krista is the realist, and I’m the never ending optimist.
When she did get it checked, and was booked tests for the next day, she phoned my cell crying. Again, I could not believe MY wife had breast cancer. And again, I told her it was probably nothing.
Fast forward to our first meeting with the surgeon, to do a biopsy. Shit was getting real now. The doctor left the room, but he left his computer screen on. As Krista sat on the examining table, I read the notes as quickly as I could. In these notes, the examining doctor said she believes Krista had breast cancer. I almost dropped to the floor. All I had in my mind was I have to hold my self together. Krista was already scared.
The doctor came in and explained that Krista more than likely had breast cancer, but until the biopsy came back, we didn’t know what stage or what type. Stage? Type? I thought breast cancer was breast cancer. Cut the thing off and be done with it. Boy was I wrong.
When we got home that day, and pulled in the driveway, it finally sunk in and I lost it. I started screaming and crying like a toddler having a temper tantrum. IT’S NOT FUCKING FAIR!!!!!!!!!!
As the weeks went on, and the appointments increased, we started to understand what was happening, and her diagnosis. I’m not going to go into too much detail about the diagnosis, because Krista has done that, I’m just going to talk about my thought process during the last 2 years.
When something like this happens, the first thing you do as a man is have a pity party in your mind. “This can’t be happening”. There’s a feeling of helplessness that is unimaginable. I’m supposed to protect my family, and my wife has this life sucking disease, that I’m unable to fight. There’s been countless times that I wished that this was happening to me instead. I think of my kids and think they need their mother more than they need me. As silly as this sounds, its how I feel.
Ahhh, the kids. They are a huge factor in how I process this. Ethan is 14, and becoming a young man, and I feel very confident that I can impart my manly wisdom and help him into adulthood. But lets be honest, he is his Mama’s boy. Naomi on the other hand is 8, and when I think about her and the prospect of raising her on my own, all I have is numerous Who’s the Boss episodes running through my head.
It’s weird. When I think about losing my wife, even though it’s likely years from now, I always think of how I’m going to handle the kids at the age they are now. Then I kind of make little deals with myself, or whomever. “Please let her be here for 10 more years, then Naomi will be 18.” I don’t say that because I don’t want to be a single dad, I say it because one of my fears is that Naomi won’t have real, tangible memories of her mother. How much do you remember from when you were 8?
Krista has been doing a bit of travelling since her diagnoses. Of the times she goes without the kids and I, it’s difficult for me emotionally. Don’t get me wrong, I want her to grab life by the balls and see the world, it’s just that it’s a bit of a dose of reality. For whatever reason, it’s like a taste of what it’ll be like when she’s gone. I haven’t even told Krista this, but when she’s away for any extended period of time, I get anxiety and panic attacks. It starts the day after she leaves, ramps up to full ridiculousness a few days later, then settles down when she’s a day or two away. By no means do I want this to stop her from going anywhere, I’ll just need to find a way to deal with it. On the plus side, the kids behave better for me when she’s not here, and I actually clean stuff.
Sex……There I said it. Krista touched on this, and now I’m going to give my side. Before she was diagnosed, but she wasn’t feeling normal, If I didn’t get it on the regular, I would feel resentful. Yeah, I’m a guy and I want to bang my wife, so sue me. But with the diagnosis came an understanding. I am no longer resentful, and she has limitations that we both understand. Contrary to what she may believe, I still find her as sexy as ever, and cancer has not changed that. Yes I still do bug her for sex, and when she says no, I say ” Well, you don’t have mouth cancer”
There are some positives:
Like anything in life, there are two sides to a coin. Our unwanted guest cancer has brought us some gifts.
It sounds hokey as shit, but it makes you really see what’s important in life. Arguments about money and stupid shit are rare now. We have a united front like never before. It may be a bad thing, but we are very “live in the now”
We have the greatest friends and family in the world, and we are reminded of that day in and day out. The opportunities that have been presented to us are countless. You all know who you are, and we love you.
I feel very educated. I know so much more about breast cancer than I ever wanted to know, but if our experiences help anybody, it would be great.

In closing, through this all, I’ve learned a lot about my wife. She’s a mother, a wife, a fighter, a realist, a dreamer, a gambler, a traveler, an adventurer, a sister, a daughter, a friend, a bitch, the bud of my jokes, but more importantly, she’s Krista, and that’s all I want.

Who wants to go down with the ship

When someone is diagnosed with a disease, you quickly find out who your true friends are.  I have to admit, it would be difficult to put up with some of the awful things a person has to go through.  It would not be easy to watch a loved one suffer. Feeling helpless to make the person feel better.  Let me tell you how shocked and amazed I was to find out who would support me and my family and to drop everything if I needed them.

It is so hard to want to be around people when you know you are hurting them. At one time I felt I had to close myself off to protect the ones I love.  I felt guilty and sad and angry about how my cancer and eminent death would hurt everyone. “The Fault In Our Stars” book/movie pretty much nailed it, “I’m like a grenade, and at some point I’m going to blow up and I would like to minimize the casualties” (slightly changed by me) It is so conflicting and lonely, you want to be surrounded by friends and family but you don’t want to hurt anyone, knowing you will cause so much pain is a terrible burden. I felt I shouldn’t have had children, shouldn’t have gotten married, what a horrible person I am to do this to them!

The truth is, I can’t do this alone. In my darkest times, I am beyond thankful to have my family and friends.

Patrick and I have lost a few friends since my diagnosis. A few that we were quite surprised to lose. We do not hold anger toward them, but disappointment for sure. Why? -is the question we ask each other most. Some of the people were close, so close. Perhaps the reason they won’t or can’t be around anymore is that they just can’t handle it. As I said above, it is a challenging situation. Maybe it brings up hurtful memories. Opens their scars they fought so long to heal. Maybe they struggle with their own mortality. Maybe they just really didn’t like us and found their out. Regardless, I learned that they were not meant to be a part of this story. Sometimes as a friend we must put ourselves aside and be there for the other person.  That is true friendship and love!

I am surrounded by the most steadfast people!  Thank you!!! We have unlimited respect and love for each other. As much as I need them, they need me too! I would be crazy to shield myself away from them!

The people that have stayed around, put up with all my shit, stood by, were leaned on, they are the ones that deserve our time and adoration. They have supported in so many ways: came to appointments, made us dinner, sent a simple card expressing love and support, bringing me your favorite scarf for my bald head, calling or messaging just to check in, dropping by, letting me cry it out, helping us move, listening, going on adventures with me, my god I cannot list all the ways in which my family and friends have touched my life and heart. I swear I would have given up by now without you!

I love you: Patrick, Ethan, Naomi, Tina, Cindy, Aboudy, Noah, Benjamin, Aunt Eileen & Uncle Len, Jenn & Brian, Jen & Mat, Shannon & Mark, Kathy & Vic, Mom, Uncle Donnie & Aunt Linda & Fam, Kyla, Tash & Fred, Aunt Betty & fam, Darlene Dave & Fam, Cousin Kelly. Davey  Belkis & Fam, Deedee, Emile & Erin, Lisa & Ricky, Granny, Elaine Pete & Fam, all my cousins!! all my family in New Brunswick East Coast represent!!! All my LifeLabs ladies!! All my readers!! My supporters!! My fellow fighters!!

*If I missed anyone, I am sorry. I do not often proofread, my writing is organic and sometimes I post too quickly. Just remember, I love you too! xo