The other side of the breast: A husbands perspective -the final post.

As much as we knew this was inevitable, this is a blog I hoped I’d never have to write.
On Thursday October 25th, 2018, at approximately 2:30pm, Krista left this world.

Krista started this blog early on in her cancer journey. She felt that it was very important to tell her story. Not enough attention seems to be paid toward metastatic breast cancer, and Krista took a great deal of pride in writing her blog in the hopes of helping and informing others. The word proud can’t accurately describe how we all felt toward her, for all the time, thought and effort she put into her blogs. If you’re reading this now, you have obviously read her blogs and understand. Long before we lost Krista, she had asked that I write one final blog after she was gone.

This particular entry, like my previous contribution, will be from my point of view, as a husband and father. I’ve been writing this over several months. Its taken quite some time to process losing Krista, and I want to do justice to this final blog.

When Krista was diagnosed in February of 2014, she was diagnosed stage 4. We knew it was an eventual death sentence. Throughout the ensuing 4 and a half years, through all the treatments, all the ups and downs, you kind of forecast in your mind over and over how you picture it playing out when the time comes. I don’t know if its Hollywood’s depiction, or perhaps past experiences of others, but what I always pictured was a slow decline, culminating with her family surrounding her bed for hours/days, as she eventually passes peacefully in her sleep.
Nope.
What actually transpired was quite a bit different than any of us really expected. Several months before Krista passed, she had exhausted all of her treatment options. We had made the decision that we didn’t want to know any approximate timeframe from her doctor as to how much time she had left. The last thing we wanted to do, was spend her remaining time staring at a calendar.
The last couple of months of her life, you could see a progressing decline in her condition. She was spending more time in bed, and pain management was the main focus. With that being said, she was still walking, mobile, eating and self sufficient for the most part. If you had told me a week prior to her death, that she only had a week to live, I wouldn’t have believed it.
Six days before we lost her, Krista was feeling off, had trouble walking, and ended up having a seizure. Krista was rushed to the hospital, and after a bit of adjustments to her meds, she seemed to come around a bit. She ended up being in hospital for 5 days. One of the last days she was there, I noticed the yellow discoloration of her skin, that accompanies jaundice, due to liver failure. I brought it up to her palliative doctor, and she confirmed what I thought. So I asked, “How many days has she got?”. The doctor replied with “Days?, no, she has weeks, maybe months. If it were only days, she wouldn’t be this alert and mobile”
With that, we were able to get Krista home. We were all very excited to have her home. We had a hospital bed delivered and a psw was scheduled to come daily. This was going to be a serious adjustment from the lifestyle we were all used to. Krista was no longer going to be self sufficient, but I was willing to move the moon and stars to make this work, because this was what we planned for, and this is what she wanted.

Krista never wanted to be tied to a bed for an extended period of time. She didn’t want to be a virtual prisoner in her own body. She was always a rock, always in control, and stubborn as hell. Krista gave serious consideration to medical assisted suicide, (the medical field are not fond of that phrasing). I was not a fan of the idea, but it was her decision to make. I would have a very difficult time letting her go, even a second sooner than I had to. I’m glad it never came to that, but I would have supported her, because, when that woman had her mind set on something, it was happening. So, I think in typical Krista fashion, she went on her way, free from the shackles of cancer, less than 24 hours after coming home. I’m not going to go into detail about her actual passing, just to say, she got to be home, see the dog, and see the kids off to school. It happened very quickly, although at the time it felt like forever. An hour or so before she passed away, I had no clue the end was coming. I take that as a blessing. I always pictured in my mind that the kids would be there, should be there when Krista passed on. I’m now glad they weren’t. Those are very heavy moments that I’ll have ingrained like a repetitive loop in my head until the day I join her. Those are not images I want my kids to have the burden to carry. I think subconsciously Krista agreed. When it became apparent what was happening, and we decided to get the kids picked up from school, Krista passed on before they could be picked up.

When its all said and done, her passing happened as it should have, and I’m at least thankful for that. She was home, got to see the kids. Her Sister, best friend and mom were here. Krista’s homecare nurse also happened to be here, which I’m very thankful for.

To say the aftermath of losing my wife was anything less than devastating is an understatement. I had 4 and a half years to mentally prepare for this, yet I’m not sure I actually believed it was going to happen. Nothing, and I mean nothing prepares you to look your kid in the eyes, and tell them their mom is gone. Krista and I were always completely honest with the kids about her prognosis, so they were by no means shocked. As a matter of fact, they handled it a lot better than I could have imagined.

As typical with any family, when a loved one dies, there’s a steady stream of visitors, be it family, friends and acquaintances, and my house was no different. For the ensuing week, my house was filled with a revolving door of guests. My fridge and freezers were filled to the brim with lasagnas, sheppards pies, and a vast assortment of other foods. Truth be told, I welcomed the distraction. Between the visitors, and the planning of Krista’s celebration of life, I had a small sense of purpose.

Two weeks after Krista passed, we had an informal celebration of life for her instead of a funeral. This is what she wanted. It was fantastic. The amount of people that Krista touched throughout her life were countess, and I think they all showed up that day. It was awesome. She’d be so proud of that.

Eventually, the dust settles, the friends and family go home, back to their own lives, and reality sets in. Krista’s mom lived with us for a couple of years, and stayed for a couple of months after, and I have the kids, but I have never felt this kind of loneliness in my life. Friends and family constantly remind me that I’m not alone. I love them and thank them for that, but it simply doesn’t work that way. For the following few months, I just felt like a piece of meat, a zombie. I had no purpose, I just existed. I got up everyday, got the kids to school, went to work, accomplished nothing, went home early, and hated myself. From the beginning, I’ve tried to handle Krista’s death the right way. But its not always easy.

Going through this, one unexpected side effect, is the amount of guilt I feel. So, so many types of guilt. I know in my heart of hearts that I did the very best I could to care for Krista during her cancer battle. But, I always wonder what more I could’ve done. I feel guilty that I’m still here, and she’s not. Krista and I have life insurance. Out of guilt, it took me two months to even call the insurance company. I’m feeling guilt over the fact that the kids would be better off with her over me. The list goes on an on, but I’m trying to work on it. Its definitely a work in progress.

Through this, my kids and I have had a great support group. We have the best family and friends that anyone can ask for. My kids are getting the support they need from their schools. My kids really are wise beyond their years. I guess they have been forced to, to some degree. We have a very open dialogue in our home. Ethan, is 17, and can be difficult to communicate with about normal, day to day matters, but when he needs to talk about mom, he comes to me. Naomi is 11. She’s a free spirit, and has always been Daddy’s girl. She’s not afraid to talk openly about anything, so I feel like they are doing ok.

Losing a parent is never easy, losing one when you’re a child is cruel and unfair. The saving grace with all of this, that could potentially be making it easier to deal with for my kids, is that they weren’t blindsided by this. I think with Krista and I being honest with them through this, they were able to process it all in due time, and their own pace. Another situation that helps, is that their routines have remained fairly consistent. For the last couple of years, with Krista’s illness, I handled the vast majority of the daily running of the house. If the kids needed something, typically they came to me. So that part of their lives remains unchanged. Kids are so resilient. As much as I’m supposed to be here for them, they have helped me more.

As much as this blog has been steeped in sadness and negativity, I do see myself as a happy positive person. As the months go by, and I get through the rollercoaster of emotions, I’m able to take a look back, and realize there are some things to be really thankful for. From the time Krista was diagnosed to the time she passed away, we had nearly 5 years. Most of that time, Krista was able to lead a relatively normal lifestyle. Everyone lives their lives a certain way, but when you receive the news that you have a terminal illness, it changes things. We may not have been able to get the quantity we wanted, but we certainly squeezed in as much quality as we could. Krista was able to get to do a fair bit of travelling, with myself and the kids, but also with other family and friends. With the help of family, friends and a lot of luck, Krista got to see and experience a great deal of places and things. I think of the many people who are diagnosed with a terminal illness, and only last months or even weeks after diagnosis. I’m so happy that we were at least given a chance to have these wonderful experiences. I’m very thankful that my kids are the ages that they are. It goes without saying that I wish Krista was around until they were adults, but I can not imagine if they were babies, or toddlers . That’s the reality that others have to deal with, and I’m very lucky.

Never a day goes by that I’m not thinking about Krista, but slowly, day by day, there’s a sense of healing. There’s always going to be very difficult days, but I have a real sense that the kids and I are going to be ok. The kids, are back to being typical teenagers. Exciting thing are happening for them. Ethan starts college in the fall, and Naomi is finding her place in this world, coming into her own as a young pre-teen. For myself, the healing has been aided by immersing myself in my hobbies and passions. I’ve been a long time hockey fan , but never played. A couple of years ago, with the help of some friends, and Krista’s support, I started playing for the first time in my life……in my 40’s. I’m absolutely horrible at it, but I play in a league and I love it. I have the greatest team mates, that are so supportive, and make it so much fun. I’m also a musician. I play bass in a band, and that creative outlet is so therapeutic, and my bandmates are family to me.

Life is full of events and milestones. Every holiday, birthday and vacation is going to present itself with the challenge of navigating it without Krista. My wife was always the ringleader of our family circus. When it came to Christmas my responsibilities were relegated to lugging the tree and decorations up from the basement, and throwing money at her. She literally handled everything. This first Christmas without her was beyond bizarre. But, we got through it, and I imagine the next one will be easier.

We just took our first vacation without Krista. The weeks leading up to it, I kept filling my head with the notion that this would be the one thing that would help me clear my head, and catapult me to move on with my life. It seems so silly now that I would even think that way. During the vacation, I actually missed Krista more than ever. Grief doesn’t take a vacation. It just needs to run its course, naturally.

At the end of the day, the world doesn’t stop when you lose someone. I try to convey this to my kids. Krista was the most important person in all of our lives, but we need to continue living, and Krista would want nothing less. As much as I feel cheated, I really am so lucky. Krista chose me, she loved me unconditionally, and she was my soulmate. Most couples say this, but she really was my best friend. We could have the time of our lives watching tv, or going to Walmart. There’s people in this world that go their entire lives not finding their one true love. Mine may have come and gone like a comet, but I had her, and I would not trade a second of it. She inspires me to be a better person. With her blog, her children’s book that she wrote, and her lust for life, she’s left a legacy on this world that will always last. She’s given me the ultimate gift of two great kids. I’ll do the best I can to keep her memory alive for my kids.
I don’t know what the future holds for my kids and I, but I know that we can handle anything that life throws at us. Ill always love her until the day I die, and I’m going to be committed to be the man she would want me to be.

In closing, I wanted to mention some special people that helped us along the way. As they say, it takes a village. There’s many more than this, but here’s a select few.

Dr. Jose Chang, and his nurse, Lisa:
Dr. Chang was Krista’s Oncologist. He always had a sweet demeanor, but at the same time, told you how it was without sugar coating it. I always had the sense that he had Krista’s best interests at heart, well beyond him just doing his job. His nurse Lisa was a rock for Krista. I can genuinely say that Krista loved her.

Dr. Todd Mainprize:
Dr. Mainprize is a Neurosurgeon at Sunnybrook. Krista had a brain tumour, and was sent to Sunnybrook. Dr. Mainprize absolutely does not fuck around. He is a dry, no nonsense guy, but if it wasn’t for him, Krista would’ve been gone a lot sooner. He changed the quality of her life, and gave her the ability to enjoy life again.

Cassondra Kahrs:
Krista’s home care nurse. Cassondra went above and beyond what I would expect any home care nurse to do. She only cared for Krista for a short period of time, but she felt like family.

Tina and Cindy:
Tina is Krista’s sister and Cindy is her best friend. They live an hour away, but were always here for us, and the three of them together had such an unbreakable bond. These awesome women made it their mission to make all of Krista’s dreams come true, and there really is nobody closer to my wife.

Donnie Loverock:
Donnie is my uncle. Krista and Donnie seemed to have such a special bond. He was quite taken with her, and they got along so well. One of Krista’s bucketlist items was to go up and fly in a small plane. Donnie made that happen.

The Lemieux’s, The Weir’s and The Ensoll’s:
Our very close group of friends that have been so supportive through all of this. All the wives in the group called themselves “The Wolfpack”. There’s no words to express what all of these people mean to us.

Elaine Bryant:
Elaine is my aunt, and unfortunately lost her husband, Pete to cancer a few months before Krista passed away. Elaine is a special person who just gives everything she has to the people that are close to her, and was here for me, even though she was going through her own grief. She still texts me literally every morning to see how I’m doing.

The Doyle’s:
Krista’s uncle Len, Aunt Eileen, cousins Darleen and her husband Dave, Darren, Randy, Davey and his wife Belkis. The sweetest family you could ever meet. From day one they’ve made me a part of their family, and Krista loved them so much.

Manalco Contracting:
I work at Manalco and Im very lucky I do. Throughout Krista’s illness, I missed a significant amount of time due to appointments and such. They have always been understanding, supportive and accommodating. Not everyone has a job where they can come and go as they please, and I don’t know how others in my situation get through it otherwise.
I want to thank everyone who has read and shared Krista’s blog. Please continue to do so. She would love nothing more than to continue to have a voice, and her story shared.

Patrick

It has been too long!

I apologize to my loyal readers and followers! These past few months have been very difficult.Not only did I contract the shingles (which was totally horrid) but also, as most of you know, my “horn” betrayed me and became a 6.5cm tumor. Some of the side effects I had include; double vision, nausea, vomiting (I lost 35 lbs), extreme fatigue (like no other, I couldn’t get out of bed), right body paralysis, I could not walk and fell down a lot, headaches and daily awful pain. I prayed to die almost everyday, for months, it was my worst life.

Finally, after almost a year of “living”  like that, an MRI of my brain was ordered on a late Friday night and I was sent directly to Sunnybrook the next day. This is where I met the amazing Dr. Mainprize! He took one look at my head and said, “ok, that needs to come out, now!” So first thing Sunday morning I was sent in for brain surgery. I was scary but exciting too.

The surgery was complicated but successful, can I get an AMEN! Mainprize basically saved my life. If the surgery did not happen, I would have died within days to weeks. No joke, scariest shit ever! So out with the tumor and in with the metal plate, airports should be interesting now lol, if I ever get off my ass and get my passport renewed!

Recovery was so easy at first, I was home by Monday night! Immediately most side effects were gone, yet another AMEN please. So even though the removal was successfully removed, we had to follow up with some radiation just to make sure all the tiniest bits and bobs were irradicated. Lost half of the hair on my head and the area where the tumor was, ballooned bigger than it was before, fuck sakes. On top of that my nausea and vomiting returned also boo. I hated the way I looked, felt like a mutant that would scare small children. Couldn’t leave the house, could barely leave my bed.

At this point, as grateful as I was my life had been extended, I started feeling horrible again and spiraled into the worst depression I have ever felt. The past year had given a mastectomy,  more chemo, a shit ton of radiation, shingles, brain surgery and depression like no other. What a year! To say the least! Any one of those could defeat a person.

I had a conversation with myself and vowed, if I could get through this massive shit storm of a year and cancer almost won……HELL NO! I felt a strength within my weakness and basically told cancer to fuck right off! It was messing with the wrong woman! Nice try but you lose another round!

So after a few months, healing, praying, soul searching and changes in medications, I am beginning to feel like my old self. Ready to fight the fight and kick some ass and start living again. It is still a struggle most days but I am getting there and will get there, no doubt!

I have to thank my husband, Pat! What in the hell would I have done without you? My rock and supporter. My caregiver of things sometimes humiliating, but he never faltered and I am beyond words to express the love and gratitude I have for this man. My mother, kids, family and friends, have always supported and stood by me, what can I say  but I thank you, so very much and I love you all!

Till next time love and laughter to you all xox

 

Just laying here on another sleepless night! If ever there was a ramble kids, this is it!

What can I say, things have been super real and super tough lately, Having “the talk” with the kids was probably the hardest thing I have ever had to do. I thought telling them I had cancer was bad but this was on a whole other level of brutal! We are heading to our cancer support centre tomorrow for some family group discussion. I am really hoping that after the kids have had a few days with this news, that they are ready to talk more and ask questions that they may have. They will both have either one on one councelling or group therapy going forward, to help them during all this. I just want them to have as much info (as they can handle) and support as I can give/get them. I am also trying to convince my mom and hubby to join a care-giver support group. I believe so much that this group would help them in so many ways, if not only to have a safe environment to complain. Fingers crossed they go! This cancer is not all about me, it affects my family and friends so much, so any way that can help them get through this easier the better. I have a strong feeling that getting Pat there will be the hardest, so stubborn that one!

Another thing that has been happening, which has put my anxiety on high alert, is an increase in pain in my skull mets and hip mets. I also have a horn growing out of my forehead, no shit an actual fucking horn. Onc has no idea yet what it is. Could be a devil horn but I call it my lopsided unicorn horn. If it is a devil horn, keep your distance if it grows a partner! If it is my unicorn horn maybe it will be filled with cancer killing magic and not just rainbows and sweet smelling farts! I have to let you know it is not very long yet, only about a half an inch, but still WTAF (what the actual fuck) I have not been “normal” since my dx. My body has not reacted “normal” to any treatments that I have had, so for me this “horn” does not surprise me, at all.

So what else is going on… Oh we are going to be visiting a cannabis clinic soon. We are trying to try everything! I am feeling pretty positive that they will be able to give me relief of pain and stress maybe even sleep! This way I don’t have to depend on big pharma’s drug’s. I have heard only a little about these clinics. I know that I don’t want to get paranoia, that is my biggest worry. I totally remember smoking an obviously shitty product joint and hitting a paranoid state a time or two in my younger days! It was not a fun place to be and depending on who was with you or where you were, it could really made it worse. Also somewhat worried about munchies, damn, I would eat anything, all the things sounded sooo yummy!! (OMG Once I thought soda crackers sounded perfect, so I grabbed a handful with nothing on them and with no water to drink, put about 3 in my gob and holy shit there was a dust storm in my mouth and I thought I was going to die!!!) So if they can concoct something up that can help treat some of my adverse side effects of cancer, limit the nosh fest and still give me that happy high!, I will defo take it! Why not have a little happiness, I think I deserve that! I think all cancer patients deserve that! Hell everyone deserves that!

I mentioned tying up loose ends, we have begun the process, kinda. I have been imagining/planning my wake, it sounds really fun in my mind and I wish I could be there dammit! Ideally in a pub, thinking the Waltzing Weasel or maybe a home, not sure yet. There must be a band, a band that plays east coast Celtic music. Then through the evening/afternoon, whenever it will be, I want my amazing talented friends and family to play music and sing! There will be shots, tequila and Fireball, so there will be a choice, but you must do one in my honour. Friends and family will tell stories and laugh and remember me, remember I love you all. So planning that part was fun and super easy. Dumdumdummmm… now the funeral however has been a little harder. I still have not gone in to a funeral home to talk to anyone. I know I must do this and really I am OK with making all the decisions that need to be made. The hardest part is actually going there and doing it, just makes it so real, and that I find to be the hardest part, just how fucking real that will be. Our Will is done, at least we have done that (thanks Mark & Shannon xo)

The hardest loose end for me to tie up is deciding my end of life choices. Now, here in Canada we have the choice to be aided in our death, it is called Dying with Dignity, and I am so glad we have this program available to us. I can now imagine a quite peaceful passing surrounded by family and friends. I have always been a little, who the fuck am I kidding, terrified as to what would happen when the time comes. So I will either die of liver or lung failure. Cancer does not actually do the killing, it just takes over organs essential for life and makes them fail. So, painful suffocation or the other possibility, ruptured esophagus and stomach plus more fantastically sounding symptoms these possibilities offer, oh and both will cause encephalopathy (basically I will lose my mind and not be myself in any way), total soul crushing anxiety and I will pee and poop myself until I pass on. Neither one of those situations sound very good. So again, so thankful for the assisted suicide option that Canada has given us.  Sounds great to me!

If anyone is still reading this loooonnngggest rambling post ever, thank you, really, thank you!! 🙂
Let us end on happier talk, Christmas is coming!!! Probably my very last one.. So I am hoping to decorate my home with so much Christmas, people will want to puke after spending too much time here! I am so looking forward to it, I just can’t wait! I feel like a little kid heehee. Presents, family, dinner, cookies and games! I think I will actually have a few drinks that night, what the hell! I am a little stressed about what to get the kids, I only have a couple of ideas and they always answer “I don’t know”, when I ask them arrrgggg kids!!!! But they are super easy going so I know it will work out awesome anyway.

So there you have it, another midnight ramble! I really should not be allowed access to the computer during the night alone unsupervised!

Anyway, thanks for reading, love & laughter always xox  Krista

 

As I was saying about happier days…

Yes my posts have been…grim to say the least for far too long!!! While I know sadness, pain etc. is a part of this, it is not ONLY what it is! lol Does that sentence even make sense?! Whatever, it stays as it is, moving on… my pain and mobility have improved so much since the week in hospital. Meds, radiation and bone treatments have finally kicked in and I am feeling miles away from where I was, can I get an Amen!!! Also, my most recent blood work has shown my liver enzymes are down so the new chemo, Eribulin (Halaven) just might be working. There is only about a 6 percent chance that this one will do anything positive but I could not help but feel such happiness and hope from those results. I have also been furiously researching, trying to find other treatments that might be available to me if this one fails quickly. I have a couple promising leads but I am not an oncologist so I really have no clue, plus we are in Canada and not all treatments are available here. As much as I am accepting my death, I am not welcoming it at all and my promise stands firm, I will not give up!

Enough about treatments!! Some wonderful things have been happening during this rough time and they need to be acknowledged! Starting with the most simple, my beautiful sister Tina took me for a mani/pedi and it was wonderful! There is nothing like getting your nails done, so simple and refreshing, just makes you feel pretty right! As you know, because you are reading my blog, I write a blog. It is with great pride I can tell you I was published in Wildfire Magazine, an online mag for younger women with breast cancer. They were doing a Metastatic issue and I was chosen to be included as one of their contributors!!! I would suggest this magazine for all the under 40’s with breast cancer. It is a really great read and touches on subjects that are important for women with breast cancer under 40, here is the link to them Wildfire. I have also been highlighted on breastcancer.org!!!! I am pretty sure that any of you reading with breast cancer has been on this site many times.  An amazing site for support, information and anything else you could think of. I actually did a podcast, holy shit I was scared lol but from what I hear from others that have listened to it, I did a pretty good job! My daughters video blog post was also shared by them and she was over the moon about that. My husband, Pat had done a blog post a while back and that was also shared on breastcancer.org. Here is the link if anyone is interested in checking it out http://www.breastcancer.org/symptoms/types/recur_metast/blog/curley-family-loveI never thought my little blog would ever reach so many, I am just a mom from Oshawa lol but, I am beyond grateful!

A few months ago I took off my wedding ring for a C/T scan. When I went to put it back on, it was gone. I could not find it anywhere and I was gutted. We all searched the house in every nook and cranny, but it was not to be found. I had planned on leaving it to my son for his wedding and it was driving me crazy that I had lost it. I looked online to see if the store still had my ring and to my surprise they did. So I planned on buying a new one, not quite the same but I was OK with it. Well, my sister, my wonderful amazing sister came up with a plan and my family, god bless them!, rallied together and replaced my ring! I was shocked and cried like a baby! My heart was filled and I found peace in my soul as soon as I put it on!

Another wonderful thing that has happened, my amazing friends!, have proven once again that they can not be beat! So supportive, loving and awesome! They knew I wanted to plan a family trip. I have promised this to my kids and it is so very important that I make this happen. There are a few roadblocks we need to remove before we can make the trip happen. Jenn and Brian automatically wanted to help and offered up their minivan and timeshare in Florida to help. Unreal! Then Mark decided to set up a go fund me campaign to help as well. We can’t thank all who have donated enough!!! The campaign is amazing and aside from a couple more bumps we will hopefully be on our way to geeking out with Harry Potter in Universal Studios and Disney soon.

While I was able to appreciate all these wonderful things, they were clouded by how sick I have been. The shorter life expectancy was also a giant hurdle to get over. I was so heartbroken. I am in a much better head space now and can now give these kick ass amazing happenings the recognition they deserve!

I want to thank all my family and friends for everything they have done. I love you all so much xox I am truly spoiled rotten and one of the luckiest people ever!!!!

Love and laughter all!! xox

The F&#k is strong with this one (not a very uplifting post, just a warning)

So here I am, another sleepless night. It’s 3:30 am and I have been trying to sleep since 10. It has been a rough few days… ok who the fuck am I kidding it’s been a rough 3 years. But this week we were told to expect about 3-6 months left of my life, technically we were told I am not dying tomorrow but be realistic it is definitely less than a year. I am currently doing my last available treatment. The cancer is very aggressive and nothing has been able to stop it’s putrid destructive infiltration.

I will not sugar coat anything, I am fucking terrified, heartbroken and frustrated as hell. How the fuck is this really happening?!  I can’t explain what is going through my mind, it is wrecked right now. I always knew what was to happen at the end of this ride, but to be honest, I always thought I would be one of the lucky ones living for 10 years. Unfortunately, my ride is coming to an end much sooner than I am prepared for. I still have hope, a deep strong hope that is clinging to life and time. I have so much to do still, so much to see.

My husband and soulmate! We have been through so much together and we should have so much more. No one could put up with me like he has. He has already had so much heartbreak in his life and I am adding more, fuck I hate that! My babies, oh dear God, my babies! How can I leave them when they still need their mum for so many things. No highschool graduations, no first loves, no marriages, no chance to be Grams. No more hugs or kisses. No more cuddles. My mother, my sister, my Cindy, my family and best of friends (I will always consider family) I hate what this disease has done to the ones I love so dearly. My heart is broken, no, there is no way for me to describe my pain and utter sadness, I can’t even try right now. The amount of pain I will cause when I go tortures me more and more.
I wan’t to run away from this, but there is no where to run. I want to wake up from this horrible nightmare but I am wide awake.

What we are working on now: Making an appointment with a psychiatrist to help us break the news to Buba and Poo on what is happening. Jesus Christ, how are we supposed to do that! No child should have to deal with this shit!!! Fucking hell, FUCK YOU CANER from the depths of my soul FUCK YOU! Planning my funeral. Planning on where to die, hospital, home hospice? Planning to tie up loose ends. Planning a family trip, as I promised! Trying to enjoy every second I can behind a smile to make each day as normal as possible.

I am not writing this for sympathy, I am simply being honest with this ramble to help get some of this blacknesss out of my head. This is a dark time for me, hopefully I can start bringing more light into my days, you know what, fuck that, I can so do it and I will. But for right now my feelings are what they are and I am allowed to feel them.

I know some of you that are reading this know exactly what I am saying and understand completely. I ask my fellow metsters, what do we do when we are told the news we have been fighting and praying to avoid hearing? How do we push aside the devastation, heartache and horrifying feelings. The mourning of my future’s loss is overwhelming and when I lose control of my thoughts and end up down the rabbit hole, it is madness!! I would much rather be having tea with the Mad Hatter, titmouse and White Rabbit!

Just to touch on the where should I die…this is a really tough one. Funny but not funny, I think about my dog. If I die away from home, she will never know and for the rest of her life look out the window waiting for me to come home. It may sound so ridiculous to some, but honestly, I don’t want to do that to her, she is my Pupup and I love her too and she is a part of my family, so unless there is hospice that allows animals, I will probably end my life at home.  This is an example of the fucked up shit I think about.

I wake up everyday knowing another day has passed, and all I want to do is stop them from passing, knowing I am another day closer to the end. This disease is fucking torture! The pain I have endured from treatment has been so hard but does not come close to the pain I carry in my heart always. Where we, as humans, get the strength to carry on when faced with such tragedy everyday, I have no idea. This has been the toughest trial I have ever endured, but I will continue this fight and dig deeper and deeper until there is nothing left to dig. I pray and hope everyday for another treatment to miraculously appear and give me more time.

Again, my promise:

 

 

It is now 4:30 and I feel a little better letting this out. I think I will make myself a cup of tea and sneak into my daughter’s bed for some cuddles and comfort, maybe I will find a few moments of peace and sleep.

I thank you all again for reading and supporting me, I love you

Love & Laughter always
Krista

P.S I will try to keep some of my posts a little lighter and happier as my days coming will be filled with mostly love and laughter! 😉

Another treatment bites the dust

About a month ago, I started to feel more pain. Pain has been a part of my everyday for as long as I can remember, but with MBC it has strongly progressed through these almost 4 years. Every time I think pain has hit it’s highest point and could not get any worse, it hits another high and I am shocked when it hurts more. A week ago, I had to send myself to the hospital as I was experiencing the worst pain I have felt so far. Literally, I was crying and screaming and did not know how to escape it. My poor mom was so freaked out. After a weeks stay with palliative care, we finally were able to somewhat control this awful pain and I came home with a plan to start radiation on quite a few spots of my skeleton. I am nervous about the rads but excited to know it will help with the pain. I am focusing on trying to get passed all the nastiness it will bring until the relief comes.

We sadly learned that after only 3 treatments of the last chemo, it has failed and there is again progression. No one, not even my Onc was expecting this devastating news. The plan right now is to control the pain first! And we are doing a CT soon to check what organ involvement may be happening.

This is a hard post for me. I am terrified and very sad. I have initially been given these 3 choices: give the last chemo a try (which has a probability of 5 percent working for only 3 mths), search for a trial drug that I might fit into (in hopes that I get meds and not placebo) or do nothing.

Since we were blindsided a bit and we did not have ALL info, I am hoping after these next 2 weeks we can find some sort of miracle to give me life. I will not speculate on time, there is really no way of knowing.

Here is my promise to my family and friends, I will not stop fighting, I will not stop treatments until I have exhausted them all, I will fight for my life with every ounce of strength I have.

Thank you all for caring, supporting, loving and reading!!

I will keep you posted with updates

Love and laughter xo
Krista

Fear & Loathing in Oshawa

Ahhh Autumn! Fall is awesome! Cozy sweaters, jackets, hats, scarves and boots! This is one of my favorite seasons including pumpkin spice everything!!! YUM! Sorry, back on track… I recently made a trip to the mall in search of some cute boots. As I entered my first stop, I was so excited, God I love shoes!! Looking for my first choice of a Chelsea boot, I picked out a couple and began trying them on. Loved the first pair, comfortable and adorable and not a bad price, but as I checked them out in the mirror my eyes started at the shoe and began the journey upwards. What was looking back at me was immediately cringe worthy. A giant hot mess! Aside from the boots, there was nothing cute about it! Big ol’body showing every ounce of my unescapable and irritating weight gain, awful hair, no lashes and a just a giant sweaty mess, sweet Jesus even my fake boob was sticking out of my top! I was done and I could not escape fast enough! I put my flip flops back on and made a quick dash down the hall, filled with anxiety, thinking everyone was looking at the drippy blimp of a woman walking down the mall. I got into to the elevator taking in a deep breath and back into the car where I succumbed to sobbing. How ridiculous!

So let’s talk body image! For reasons I will not talk about here, it began when I was a child.  I can not ever remember feeling good in my own skin or really loving myself. Having cancer sure has not helped in the department. I know I am not the only person in the world and I know it could be worse but this is how I feel and I know others feel it as well. I have touched on this subject throughout my blog and it seems to be a theme of most others lives with cancer as well. Things that have affected the view of myself include: no eyebrows, no eyelashes, thinning/baldness altogether horrible hair, weight gain, port insertion scars, absurd sweating, mastectomy scar, uneven boobage, fat arms, honestly fat everything! I find it so challenging to keep a positive self image. It is hard enough facing daily pain, depression, exhaustion and my eventual death everyday without self hatred added to the pile. Daily fear of progression and what may come next is a constant nuisance but a negative body image that stops one from wanting to leave the house and causes anxiety is the pits!

So the question is, how does one keep her/his chin up during all of this? I was doing great for the first 3 years or so of my diagnosis, but I have found it hard, that word does not quite describe it, daunting, alarming, demoralizing, disconcerting, discouraging, disheartening, frightening, intimidating, off-putting, unnerving and any other words I can steal from the online thesaurus! I need to rekindle my fire for living and not let my self loathing interfere with the life I have left.

As I was retelling the story of my shoe shopping failure, my amazing son reminded me, “You look great mom, even when you say you look terrible, you don’t and you are beautiful!” Come on!!! How on earth did I get so lucky to have such an outstanding 16 year old! My husband is always telling me he wishes I could see me through his eyes because I am beautiful! I wish I could, he is so sweet. I think most women can understand, that while it is nice to hear such positive things and being so supported is awesome, the vision we see through our own eyes can not be changed by this. It is up to me (us) to accept who I am and change the adjectives to positive loving ones! Adjectives like cute, beautiful,luscious and glistening! 😉  Acceptance, this is the key! Learning to love the person I am now, scars, sweat, big booty and all! I have committed to changing the view. So daunting and difficult but worth it, I am worth it!

Love and laughter everyone!! xo

Bucket list- Pasta

So a while back I talked about a bucket list. I can not express how important this list is!! Not just for people with a limited life but for ALL! My hope is that every person checks off a list item once a week. Remember, things put on this list do not always have to be sky high and hard to reach. Sometimes the more simple ones can bring just as much joy and sense of accomplishment and can be so satisfying!! Recently I checked off making pasta. It is just something I have always wanted to do. So my sister, Tina and I were able to spend a few days together and we decided to make it. The dish was pappardelle pasta with a homemade beef ragu. The sauce was spectacular and I highly recommend making it! We used a pressure cooker with stewed beef chunks, celery,carrots, garlic,crushed tomatoes,beef stock and a little tomato paste (I think that’s it), a very simple but delicious sauce. When we started making the pasta, I have to admit, we were nervous. TV always makes it seem so difficult and easily screwed! Don’t overwork or underwork the dough, too dry or too wet, do not overcook or undercook even by seconds!!! This was a lot of pressure lol So we said screw it! We are going to have fun and make this pasta!! ( we had a bag of dry store bought just in case 😉 ) So away we went sifted our dry ingredients made the oh so important “well”. We are still trying to figure out the purpose of this “well”, why is it so important? Why can’t we just add the wet mixed ingredients to the dry slowly? Oh so many questions…  Whatever, if that is the way it is done, then that is the way we will do it! It was messy and we thought we were doing it all wrong but slowly it started to come together and then voila! pasta dough!! No pasta machine, no problem!! A rolling pin was all we needed! Rolled it out, cut it up and popped into boiling water! We had such a great time! My nephew and daughter helped and it was such an amazing memory to be made! Our dinner was a hit for all and we are looking forward to making it again.

So, an easy cheap bucket list item checked off the list!! Start to think of things you have always wanted to do. Big or small! Experience and adventure are waiting for you, just open your mind and start doing, start living!!! You will not regret it!!

Progression

MBC is always progressing. Whether it be slow or fast, always forward this monster claws. Mine, once again has grown. For the past little while I have experienced pain in a few areas of my skull ( bruise like feeling),pressure, headaches, fatigue and nausea. So scans have revealed mets to the skull and liver.

Please don’t tell me to stay positive, I promise you I am being as positive as I can be!! Please do not tell me “I got this!” or “Everything will be OK!” Everything is not going to be OK. I feel the need to remind everyone, the end game of this disease is death. It has no cure. The only hope is to slow it’s growth.
My doc, the amazing Dr. Chang, has never been able to give a time frame even after years of me (annoyingly lol) constantly asking how much time I may have left. This changed last week and because I feel like I know him and a little on how his brain works, it scares the hell out of me. My life has basically been calculated to about 2 years. He has worked so hard to try and slow this cancer down. He is so smart and has so much knowledge. I think it has frustrated him that my cancer has eluded his plans of attack.

So I have vowed, once again, to fight fight fight for my life and plan on proving those stupid STAT’s wrong!

The plan for next week: a new chemotherapy called Xeloda and a biphosphonate injection Zometa. An MRI for the liver will also be done to check out the extent of the liver tumors.

Progression is not great news but it has been expected, sadly 😦   BUT, I am feeling pretty positive and surprisingly mind strong.

Love, live and laugh everyone!!! Much love xox