I want to be sedated

5 AM, I woke to a whimper from the other room. I jumped up to see what was wrong. H was laying there in her bed, crying with no tears saying she couldn’t find me. She had had a nightmare. As she tried to recount it to me, I could barley understand a single word she was saying through the crying and sentences that made no sense.

This has been our new reality these past few days. Nothing she says makes sense anymore, she can barely complete a sentence. Instead, she repeats words over and over and eventually passes out before you can understand anything.
But this morning she was so distraught. After she calmed down a bit, or so I thought, I asked her if she would be willing to take her morning medication. A cocktail of pain meds, steroids, anti-convulsion pills and nerve pain control. She said I was trying to kill her.
For a moment, I felt like the nurse in “kill bill”, you know, the one with the eye patch played by Darryl Hanna? or the woman in “misery” holding the author captive and playing nurse played by Kathy bates? Great movies by the way, but not at all who I am of course. But when someone you love dearly, looks you right in the eyes and tells you that you are trying to kill them, it messes with your head I assure you. But I digress.

H has had some problems holding things in her hands lately, so I often have to help her, much to her dismay, otherwise she wears whatever she is trying to eat or drink. Mostly liquids now, she doesn’t eat much solid food these days.
After many tries, I managed to help her put the pills in her mouth and drink a few sips of water. For the first time, I decided to add a sedative to the cocktail. I can no longer sit and watch H be so confused and scared and agitated. This cancer is not inly killing her, it’s killing my soul.
Watching someone you love so dearly become someone else entirely. Watching them suffer, and not being able to do ANYTHING about it. I feel as though everything that was good inside of me has been taken hostage.

As each day passes, and H gets closer to death, I fear I may never recover from this. I have been through some severely traumatic events in my life, some as early as age 3, and somehow I was able to overcome them. But this, this is even worse than my worst nightmare. H is slipping from my grasp on a slippery slope of painful deterioration. She sees me as the bad guy now, no longer her loving wife of 17 years. This is most painful. I speak softly to her, I tell her I love her, and she cries and tells me to stop yelling at her. I am afraid to speak, instead I sit beside and say nothing and fight back the welling tears in my eyes for fear that she might briefly realize the pain and agony this is causing me.

I wish for her tranquility and peace now. I know if she was able to, she would not put me through this hell. I know the woman I fell in love with and loved for so many years, has already left. I miss her so much. This cruel twist of fate to our once envied fairly tale is leaving me with a broken heart, an empty soul and severely damaged mind. I can literally feel my heart breaking. I always thought when people said things like that, that they were drama queens. Well I can say, it is real, it does happen and it hurts like hell, to the point where I can barley breathe at times. Very powerful.

I don’t know how long H has left in this world, but she told me this morning that if this is her life now, she wants to die. When she said that, it was as if someone threw me against the wall. If she has to die, why does it have to be like this? Why does it have to be so scary for her? Her brain is full of metastasis from the breast cancer, causing her to be so confused and agitated, causing her to see me as the enemy.

I miss the woman who loved me so beautifully, who made me feel worth so much. My biggest fan. The love of my life.
When I go to sleep, I have this delusion that I will awake, and this will all have been a nightmare. She will be asleep next to me in our bed. She will wake and know me and love me like before. Her beautiful blue eyes will sparkle as they once did. Her witty humour will bring about laughter and inside jokes like they once did. My partner in life, my best friend, the only person on earth who truly knows me and accepts me for who I am, I want her back.

I once told her, well before she knew she had cancer, that I would never let anything bad happen to her. Cancer has made me a liar. It has taken hold of her to the point of no return, and left me powerless to save her. Cancer is a serial killer. How ironic that I have always been obsessed with human serial killers, but never even thought about the most brutal killer of all. The one that would take my wife from me.

My panic attacks have returned. I had worked so hard to keep them under control for so many years and suddenly, they have escaped and are wreaking havoc. I feel so undone, unraveled, this fucking sucks. I don’t want to do anything or see anyone. What is going to happen when H is really gone?

Never felt more alone

I had started to write a blog a few weeks ago called “burned out”. The problem is that I was too burned out to finish it.
Today, I am still burned out, but I’ve found a way to kick it into another gear for my wife. She is still at home, this is where she wants to be. She can’t walk, or care for herself very much, so I do everything I can to take care of her.

It’s been about a week now, that I’ve noticed a change in H. She has slowly stopped eating. She eats maybe once a day now, sometimes twice and it’s not very much when she does. She also started having more pain in her hips and shoulder. I know she has bone mets on her spine and I wonder if they are just wreaking havoc on more and more bones. Because of this pain, I have not been able to get her out of the house in almost a week. Getting her to roll on either side so that I can put the harness on her to get her into the wheelchair is not possible without causing her a lot of pain. She is also sleeping a lot more. Her pain meds have been increased and so she sleeps even more. The hardest thing to deal with is H’s new confusion and agitation.

Her doctor told me that she appears to be in the final weeks of her life.

I knew this time would come, but no matter how much you try to prepare and believe you’ll be ready, you never are. How can you be? I knew her cancer was aggressive, I knew it would eventually end her life, so why then, am I so surprised that the time is near? Even now, even while I notice a change everyday, I still have a glimmer of hope, that she will pull through. I must be delusional.

I start school next week. I contemplated not going, but I have to think that if H does go soon, I can’t just sit in our home all winter and fade away. I am so scared. I randomly have tears streaming down my face at any given moment and H is still here, what the hell is going to happen when she’s not? H also made me promise that I’d graduate, she said if I didn’t, she’d haunt me… Ya that’s her sense of humour lol so I’d better go to school.

Some moments I think she has only days left, the next moment she seems awake and fine (except for the confusion). This journey has been such a roller coaster. I’ve read other people’s stories about their journeys through cancer, but you can never predict what yours will be. Nothing prepares you for this. When all this began just over a year ago, i had the idea that I could handle this, I could get through this unscathed. How naive. I have been tested in so many ways, and I am surprised that I can still carry a coherent conversation. Maybe I can’t but no one has told me.

We have some really wonderful friends and family around us who are doing everything they can to be there for both of us. So why the hell do I feel so alone? It’s impossible to talk about anything with anyone because I’d just cry. At least I can type and cry (occasionally stopping to wipe the tears so I can see the screen), talking and crying is just annoying. Never in my life have I felt this sad for this long. It’s like a permanent feeling. I close my eyes at night, and i have flashbacks of all the horrible events that have accompanied this horrible disease. I think I am traumatized. It’s so fucked up because for 17 years, my wife, my best friend, my everything, has been there to help me through anything and everything. And now I can’t turn to her. I feel as though someone has cut off my arms and legs and dropped me in the lake and now I have to swim to shore. That may sound a bit over-dramatic, but I don’t care, that’s how I feel.

These next few weeks are going to suck and I don’t know how to get through them.

I still have that hope, deep down, that H will stick around, but I know it would only be for me. Months ago, I told her that when it was time for her to go, that it was ok, and that I’d be ok. I felt I needed to tell her that then because she was very much “with it” and I knew she understood what I was saying. I’m thankful I did that, because I would not be able to tell her that now, she wouldn’t understand. I don’t think she even knows how much time the doctors say she has. They’ve left it up to me to tell her or not. I figured if she asks, I’ll tell her, if she doesn’t, then I won’t.

Despite all this pain I feel, I have comfort in the fact that H and I were able to have all those hard conversations well before this moment. We took the opportunity to say all the things we needed to say long before this. When it’s her time, she will leave knowing that she is my world and that she was loved with my entire heart and soul. Most people go there whole lives looking for the kind of love she and I shared, how beautiful that although her life is cut short, she was able to know such a genuine, honest and pure love. I am forever thankful for that.

It’s time for me to tighten the seat-belt and continue on this roller coaster ride. I think I will will need some heavy duty therapy when all is said and done, but I know H will always be my angel and guide me through the rest of my life.

For now, I will just enjoy every moment we have left.

almost a year to the day…

My beautiful wife H, celebrated her ninth and final chemo treatment 2 weeks ago today. The plan was to stop treatment for awhile, because it had made progress in shrinking the tumors. Her doctor, H and I all agreed, that H needed a break. This last chemo was on a Monday.

On the Friday of the that week, so four days after chemo, I had to drive to Montreal (3 1/2 hours away) to help a friend move. H was very emotional that day, and said she didn’t want me to leave, so I said, “if you feel well enough, why don’t you just come for a ride with me”.

She agreed. She also insisted on driving. As we were going along, I noticed that she was swerving a little too much for my liking. I asked her if she was ok. She said yes and continued. Then, she started driving in the opposite traffic lane. That’s when I demanded she stop the car and let me take over.

Once I took over driving, she just stared off into the distance and didn’t speak. I figured she was just pissed off because I said her driving was scaring me. (normally she is a fantastic driver, she even races her sports car on the track).

We met up with our friend and made our way to the local coffee shop to pick up coffee for the road. Our friend came to the car, H got out and gave her a hug. Shortly there after, H got back into the car and looked perplexed. I asked what was wrong, she started saying strange things that didn’t make sense. She was reaching for her seat belt on the wrong side and trying to make sentences, but couldn’t. It was hard to know if this was chemo brain, because she had been suffering from that lately, but not quite like this.

I decided to continue on to Montreal with her. Throughout the ride, H was very quiet, often just gazing about, and then falling asleep here and there. I figured she was just tired from the chemo. We were about 5 minutes from our destination, and she began to vomit in the car. Once I stopped at my friends house, I helped H out of the car and tried to get her to sit on a chair. I positioned the chair behind her, but she kept turning in circles. It was like she couldn’t find the chair. finally i managed to get her to sit.I changed her pants and shoes because she had vomited on them. My friend gave me clothes for her.

I quickly loaded the few things into the truck and headed back to home. The whole way home, H was vomiting. I went as fast as I could and called the home nurse on the way. When we finally arrived home, the nurse came and hooked H up to hydration and gave her a steroid medication to ease any swelling in her brain. H was also complaining of a headache. The nurse strongly recommended that we go to the ER, but H would have none of it. So the alternative was to take the steroid meds and hope things change.

That night, anytime H got up, so did I. She was not able to use the bathroom properly, she would reach toward the wall to flush, and make actions of taking toilet paper, but not actually taking any. So each time she got up, which was almost every hour, I was there to help her. I was afraid she may hurt herself. She was also unable to tell me the date, my name, or any other simple answers to questions she should know.

Finally, on the Monday she knew the date! This was amazing, not only that, she was back to herself again. Completely able bodied and mentally capable. It seemed as though the episode had passed, and H could now focus on getting back to “normal” life. The entire week that followed was a beautiful one. H and I went to many places, did some shopping, laughed and just enjoyed every moment together.

Saturday, my father came over to help me build some stairs going down to the lake by our house. H made everyone breakfast before she left to meet a friend. She returned a few hours later. Another friend came for a visit that day and showed up at the same time as H.

H sat in her car. it looked as though she was staring in my direction and not moving. I asked her if she was ok, she replied yes. I found her demeanor and tone odd, but I didn’t think too much of it. She then got out of the car and greeted our friend.

I continued to work with my dad and I left H with her friend. I occasionally came back up to retrieve more wood, and each time I did, the two of them were sitting on the little bench, our friend chatting away and H seemed to be staring off as he spoke to her. Again, I just thought she might be getting tired, because she often got tired quickly after being out and about. Nothing abnormal.

My dad informed me that we were in need of more wood for the project, so he and I left to get more. H and our friend were still together when I left, she waved goodbye and all was well.

Upon returning home, I saw that our friend had left. My dad and I brought the wood to the project site on the side of the house. I went to look for H. She was sitting on the back deck facing the lake. She seemed off, a little spacey. I was staring to get nervous because I remembered how she was the Friday before when we went to Montreal. She started to have that similar spaced out gaze. She assured me that she was ok, so I went back to working on the stairs. But it was nagging at me. So I went back to her, this time, she was standing at the top of the stairs not moving a muscle, just staring off. Again I said, are you ok, with frustration in her voice, she said yes. So again, I went back to working. My sister, who was also there, said that she saw H sitting on the dock for almost 30 minutes while I was at the store buying wood. then H picked a flower and gave it to my sister. all the while being very spacey.

When she told me that, I dropped my drill and ran back to H. I sat at the patio table and looked her in the eyes and said, “Whats the date today?” She didn’t lift her gaze and just said 2014. I said “ok good.” and then her arms went up in the air and she pushed back in her chair and was having a seizure. I screamed for my sister who came running and held her while I got the phone to call 911.

When I returned to the back deck, H was just coming out of the first seizure, and then had another right away. This time she was blue and not breathing. The 911 operator told me to put her on her side. She had been sitting in a chair so she needed to be put on the ground. H is not a small girl, and my sister was trying to figure out to move her without dropping her. I barged in, picked H up and placed her gently on her side on the floor, she began to breathe. Don’t ask me how the hell I did it, I just did. there’s something about seeing the love of your life turning blue because she can’t breath, and staring into your eyes with shear panic in her eyes, that makes you superwoman. I now have that image of her fearful gaze etched in my brain, and it is so frightening. As the paramedics arrived, she had yet another seizure.

They took her to the local hospital and then transferred her by helicopter to a larger hospital in Ottawa where her oncologist team is. They put her on life support in order to safely sedate her and ensure she continued to breath.

The doctors where searching for the reason of the seizures and came up with a few possibilities. 1) infection. treatable with antibiotics (best case scenario). 2) bleeding on the brain. can be controlled with meds. and 3) the cancer has spread to her brain. (worst case scenario).

Today, almost a year to the day that we found the lump that began this journey, the doctors have confirmed that the cancer has spread to her brain. We are supposed to discuss treatment options tomorrow, but the prognosis is frightfully poor. I know the treatment option already. 2 weeks of intensive brain radiation and more chemo. I will not put her through any of that, just to prolong her life for a week or two, only to be attached to tubes and laying in a hospital bed. They are giving her days to possible weeks to live.

The love of my life is about to leave me, in a way, I never could have imagined. At a time in our lives, when we had just bought a new house, done tons of renos to make it our own, and finally where in a wonderful place in our lives. I have been with H, since I was 19. We have been giddy in love ever since. 17 years later, here we are. As she lays here in ICU, attached to life support, I hold her hand and say her name, she opens her eyes and squeezes my hand. She is so heavily sedated but she knows I am here. Today is Monday, we are at polar opposites from where we were last Monday. This disease has devoured my wife’s body and extinguished our plans to live a long beautiful life together.

I am numb with despair. I fear the coming days. The decisions I will be forced to make in my wife’s very best interest and not my own. At 37, she is to young to leave this world. At 35, I am to young to be a widow.

Our journey has not yet ended, and I am cherishing every moment I have with her, but it will end soon, or so they tell me. I don’t know how I will deal with the inevitable, I don’t even remember my life before H. I am terrified.

 

Scar tissue

Last night, I hardly slept. I lay there, staring at the ceiling. I looked across the king size bed, only to be reminded, that I lay there alone. My wife sleeps in the guest room. She is often awake at night due to the steroids she gets during chemo, so she sleeps in the other room not to wake me.
But still, I find myself wishing she would wake me, wishing I could, once again reach across and feel her beside me as I have for 16 years now. Instead, Every-time it wake up, there is a very brief moment, when I forget everything that is bad. And then, I reach across and am brutally reminded of our reality.

There are moments, when I will get up and check on her, to make sure she is still here. My mind plays tricks on me, and terrible thoughts rush through my head. I’ve had nightmares of waking up and I can’t find her anywhere, she is gone forever.

I have not slept enough, I am too emotional. This makes putting on a brave face for my wife when she wakes up, difficult. I hate days like this. The slightest thing can make me cry, that’s so unusual for me. I am always a rock emotionally, but cancer has stripped me of my strength. It has brought me to my knees. It has attacked the one person on this earth, I can not be without. It has shaken me to my very foundation.

Over the years, My heart has been torn by my mother, broken by lovers, darkened by wolves in Sheep’s clothing and stabbed by toxic people. But amidst all that, it has been opened and restored, it has been shown love and how to love. It has been strengthened and given the power to heal all the scar tissue left, from traumas past. It now faces the most difficult challenge of all. I feel it tear and break daily, I only hope it has enough strength to repairs itself once this nightmare is past.

I’m happy I can blog, because I choose to be private about my feelings to friends, mostly because I just can’t verbally express them without crying. Nor can I write without crying but you can’t see me lol

I almost feel better for the moment…

CT scan

Tomorrow we get the results from my wife’s first CT since starting chemo.
I think we’ve been on edge for a week now. It’s hard to know how to feel. She looks good, feels good, does that mean the results will show the cancer has shrunk? We’ve been through way too many emotional roller coasters lately, I really don’t know how much more I can take.
I nearly had a panic attack just before falling asleep last night. So many thoughts swirling around in my head, it makes me dizzy.

Right after we get the results, whatever they are, my wife then has to sit through another 6 hour chemo treatment. Of course I sit right there with her, we make a day if it. As shitty as it is, we do our best to make it enjoyable.

It’s funny, I keep catching myself gasping for a breath every so often. I guess I’m holding my breath without realizing it.

This fork in the road of our journey, has brought us closer as a couple, which I didn’t think was possible. I only wish I could make everything ok again. Make my wife healthy again. But I can’t… I can only listen to her, hug her, hold her, cry with her, encourage her, and be with her, every step of the way, and love her.
Aside from that, what can I do for her?!

My sister is convinced that the results will be in our favour. I hope she’s right.

I doubt either of us will get much sleep tonight. This feels like the night before the appointment, when we waited to know if she had cancer in the first place. That sucked, and so did the results. But we weren’t prepared, well how can you be? We’re not prepared this time either, but we’ve had just about the worst news ever already, when the doc said she could either get better or go quickly. So, I have to believe the news tomorrow will be better than that.
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***positive thoughts and energy***
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This is what will get us through!

~ update ~
The scans showed, the cancer is shrinking! F#%king incredible! Let’s keep the miracles happening!
Positive energy is amazing, thank you!