New light

light_at_the_end_of_the_tun1When Heidi passed away, I learned a valuable lesson, life is short. Believe it or not, irs a hard lesson to learn. When you’re in your day to day, the last thing you think about, is that there may not be tomorrow. I learned it the hard way, but I am thankful for it.

During Heidi’s final months, she told me to make sure I allow myself to love again. She said “you’re so young, don’t fade away when I’m gone, don’t let this stop you from loving again.” At the time, I shrugged it off, I never knew how powerful those words would be for me now. In a way, she set me free to live and love without guilt, when she would be gone forever. I thank her for that, because without that blessing, I don’t know if I would ever be able to love again, without feeling as though I might be disrespecting her.

Since Heidi’s passing, I’ve decided to keep living, keep moving forward, and that I was worth it. I never believed I’d find love again, of course what Heidi and I had was it’s own entity. We met when we were very young. Now I am much older, and I’ve found love again.

Many people may think it’s too soon, I was told by a “friend” that I was selfish and didn’t take my life seriously. She thought I should be mourning forever. She even went so far as to tell me one day “you should be in a black hold of misery, unable to function”. WTF is that all about?! needless to say, we are no longer friends. She was one of Heidi’s best friends, and I guess, we just have a difference of opinion.

I choose to live. I’ve met a women who has seen the very best in me. Someone who respects what I’ve gone through, and respects Heidi’s place in my life. I could not ask for more. No longer will I worry about what others think as far as “timeline” as far as what they think I should do or not do. I am my own person and am very capable of making my own decisions. I think people forget that I can still do that.

So my new journey, my second chance at life and love continues.

Mornings

They suck. I thought they were bad before Heidi passed away,because I’d see how our life had changed, but it turns out they’re even worse now that she’s gone.
I wake up to an empty bed, same as before but it’s when I walk into the living room and see that her hospital bed is gone and so is she. That’s when it hits the hardest. That’s when I feel the pain from my shredded heart as it attempts to pound harder at the thought of seeing her. That’s when the tears start, like clockwork. I have never know a pain so deep, so over powering, so gripping.
I try to subside it by going out with friends and keeping busy, but I come home to the stillness and quiet that remind me she’s still not here.
I think of her a thousand times a day, I even have reached for My phone in hopes to tell her something, then I realize I can’t.
My life is so different now. For almost 18 years I had a purpose, a love, a partner, a life which made sense and was everything we ever wanted. Now I’m in limbo. Kind of floating around, not sure what to do, trying not to vanish in my sorrow. Sometimes wondering if there is something I can do that will bring her back, maybe do something stupid so she’ll give me crap, but obviously I can’t and she won’t.
This pain cuts so deep, even crying doesn’t sooth it. I just want her back, I need her to tell me it’ll be ok, I need to feel her hold me in her arms again. I miss looking into those beautiful blue eyes and feeling such love and comfort. She is and was my absolute everything, and I loved every minute we spent in each others lives.
Now long for a single moment.

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My angel got her wings

Yesterday morning my dog woke me up. Not like she had done every other day, this time it was urgent. I got up to see that H was ready to take her final breaths. I took her hand, I told it was ok to go, kissed her and with that, she slipped away. The time, 7:17am, this was her final gift to me, she waited for me and the time is also our wedding date July 17 (7,17).
Words can’t really describe the loss and deep sadness I feel. A part of me is gone, a huge chapter in my life has ended. I feel a hole in my heart and soul.
This morning I woke up, it was real, she is gone forever physically. Last night there was a brief storm which produced the most beautiful rainbow. I know it was H, she’s showing off now 🙂
H fought such a hard battle, she always had a smile and never gave up. She is my hero. She taught me so much about love and life and myself.
I hope she is safe and no longer in pain, she deserves to be free and able to do all the things she could no longer do.
I miss her more than I can describe.

I love you Heidi, RIP my darling!

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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.

And the roller coaster continues..

I’ve had a couple of you wonderful people, ask me how things are going since I’ve been somewhat absent from blogging. So I thought I’d give an update.

H came home from her stay in the hospital on June 24th. Her seizures were under control by meds and the lesions on her brain were received 5 doses or whole brain radiation (WBR). By the time she was released, her head was as clear as it had ever been and her spirits soaring high. After having spent 2 1/2 weeks laying in a hospital bed, her legs needed some work. At home, she used a cane at first and a walker to get around.

It was so nice to finally have her home, and she decided it was time to come back and sleep in our bed. She had previously been using the guest room for nearly 7 months. She thought it was better that way, not to wake me if she needed to get up. Turns out, she was going through a depression which, under the cloud of all the stress, I totally missed….

Despite that, we were on a new path now. H was motivated, excited to move on. Even though her prognosis was weeks to months, it didn’t make her miss a step, so-to-speak.While she was in the hospital, we planned a birthday party upon her return home. Her 38th birthday was july 6. So on July 4th, we threw a party. We invited 20 of our closest friends and family. It was a beautiful party, and a beautiful day. Although H had some difficulty walking, she enjoyed every minute of that day.

In the days following the party, I spent time doing physio exercises with H, to try and get her legs back. At first, she was doing great, no hesitation, no trouble. As the days went on, she would say that her legs began to feel stiff and they were becoming more and more difficult to move.

On July 8th, she came to me and told me she could not pee. I took her straight to the ER. They gave her a catheter and sent her home. July 9th, they removed the catheter, but we went back early in the morning of the 10th to have it put back. Throughout these several visits to the ER, H was still using the walker, and managing to get in and out of the car. It was becoming more difficult though.
By July 10th, she not had any BM either.. (Sorry if this is too graphic..) so The nurse handed me an enema to give her and sent us home. No problem, I’ve got this!
That day, I gave her the enema, and just as I was helping her get to the commode, her legs gave out. This took me by surprise so i couldn’t hold her up. Luckily, I was able to set her on the floor gently and not drop her.
Somehow, while this was happening, H found the courage to laugh. She wasn’t upset or freaked out at all. I on the other hand, was a little more panicked. I called my neighbor, my wonderful neighbor and friend, who came over straight away. With her help I was able to pick H up off the floor and eventually get her to the commode and then the couch.
Unfortunately, I could not get her off the couch later that day to bring her to bed, so she slept on the couch.

By now, her legs and lower body functions were not working at all. The home care nurse, came by each day over the weekend, to make sure she was ok. On Monday, July 14th, H’s family doctor came to the house for a visit, within an hour, she was in an ambulance, on her way to the hospital. He wanted to get her scanned A.S.A.P.

Waiting in the “observation wing, was terrible, but my friend Stacy, H and I made the best of it. I wonder what the nurses thought, when they went into the room later to find a dozen blown up glove balloons taped to the wall with funny faces drawn on them. At 3:30am,H was given a bed in the oncology ward.
She was given a dose of radiation that night too. They said she would have to stay until at least Friday.

The next day, H had an MRI, I’ve never had one, but they look like an awful experience. The doctors had told us that, they thought there was a tumor compressing her spinal cord. What they found was a tumor growing from the inside of the spinal cord pushing outward. This is rare, it’s found in about about 3% of patients. This brought the possibility of H regaining the use of her legs, down quite a bit. But, they recommended she continue the radiation just in-case it did work.

Yesterday, july 17, was our wedding anniversary. we’ve been together for 17 years and married for 4. I took her outside in a wheelchair, we talked for a long time and just enjoyed the fresh air. We had dinner together in her hospital bed and we watched TV for awhile. Not the best situation, but at least we were together. The doctor bought us a drink from second cup, since we could not have alcohol lol. Last year on this day, we received the news that H had cancer.. So I suppose this year was a bit better than the last.

Monday is my birthday, and H is scheduled to have one more radiation that day and then maybe, she’ll come home. The doctors are concerned about sending her home, especially if her legs wont function at all. But I am ready, we are having a lift brought in, and I have learned how to change and dress her. we’ve also got a hospital bed ready and many other pieces of equipment. She wants to be home for however long she has left, and I will make it happen.

She is my true love, and in sickness and in health I will do everything I can to make her comfortable, safe and happy.

To be continuedPhoto 2014-07-16, 10 20 04 AM

And the world keeps on turning..

Day 5 in ICU, H was taken off of life support yesterday and is breathing on her own. Thank fucking god!
She is however, not herself as of yet. She is paranoid of the nurses and doesn’t seem to remember a whole lot of the past couple of weeks.
I’m hoping today, we can get her out of bed a bit, and maybe the drugs will have worn off a little more. Then, I can see of she is able to be her old self again.
I’ve been sleeping on a couch for 5 nights in the ICU ward. It’s amazing how, when you walk outside to get some air, you realize that life is going on around you. I feel like people are wizing past me at 100mph and I’m standing still in my fear and exhaustion.
I wonder what today will bring, will my wife know me? The date? Will she be more like herself?? Only time will tell.
I have to wait until 8:30am before I can see her today, it’s 7:15am right now…
I think today, the doctored want to tell H the Grimm reality of her health status. I fear for her reaction of that, but I will be strong for her.
She is my soulmate, my lover, my wife and my very best friend.. I’m lost without her!