Thursday, 15 November 2012

Here I sit.  It's quiet and I'm on my own, and I'm thinking.   A week and a half ago we were out as a family, incredibly precious.  We saw Cirque  D'Eloise and it was amazing, but the sheer will it took for Kevin to go was awe inspiring.  It was a beautiful night, and I can't fathom that it was only a short time ago.  Here I sit.  It is the eve before I go to the funeral home for his visitation, the day before his funeral.  My heart is broken into a million pieces.  Peacefully and at home, Kevin Andrew Stem died with his mother and myself at his side.

My message is to him.

My darling Kev,

I made promises to you that night.  I promised that we would love you forever.  We will.  I promised that I would take care of our children and keep them safe.  I will.  Here's the promise that I didn't get a chance to say out loud.  I promise that Quin, Cian and Tadhgan will always feel the love from their daddy, that they will know how hard you fought to stay with us, how brave you were and how much you adored them and everything to do with them.  I miss you so very much.  Please be our guardian angel.  I need you to be our guardian angel.  I don't want to do this alone.

Rest well my love,


Thursday, 1 November 2012

Again, I can't believe how long it has been since my last post.  The summer seemed to go by so fast with school starting and Kevin back on chemo.  It was a crazy time, but it still hasn't prepared me for what the last few months have thrown at us.  The chemo that Kevin was on made him very sick and very weak, so he made the decision to go off of it to hopefully get stronger, to be able to take it again.    It didn't really work out that way.  By the time we went back to see his oncologist in August he was feeling awful and had lost another ton of weight.  His doctor was worried.  The gears had been changed, and the biological chemo they offered was to manage symptoms, not cure him.  The news was devastating to Kevin and to me.  It seems like we have been fighting for so long, I can't really remember living any other way.  All of this has been going on while the boys started school, Tadhgan went to daycare and I continued full time school.  To say that it has been crazy is a bit of an understatement. I am finding the juggling of not only the things to do, but the waves of heavy emotion to be crippling at times.  Kevin has not wavered in his belief that he will find a way to beat this.  It is his will to live that keeps him going, it is our boys smiling faces that keep him here.

Kevin continued on the biological chemo for three treatments.  It was administered every two weeks at the hospital, and just getting there was really hard on him.  He had started to retain a lot of fluid, mainly in his legs which made walking painful and difficult.  There was so much fluid that the skin on his legs started to give way to the liquid, causing tears and cuts on his shins.  It soon developed into cellulitis, an infection of the cells that he had to take meds for just to control it.  It was a huge hurdle for him.  Being immobile was not something he wanted to accept.  He went through anger and then sadness.  It was hard to be faced with all that these symptoms meant.  We were told that things were not going in the right direction, and that there was no way that they knew of to change the course.  The deep pit that had been living in my stomach made its way to my throat.  After all of this time I still can't believe that this is happening.

The biological chemo was stopped when it was evident that it was no longer even controlling symptoms.  Chemo is hard to take in the best of circumstances, but when it isn't helping anything, all that is left is how weak it makes him.  We went home that day quiet, pensive and with a sadness so deep that I don't know if I will ever be able to get to the surface again.

Kevin went up to his parents place after that.  He needed not only a change in scenery, but 24 hour care that wasn't in place at the house.  During his stay he went to the hospital for an appointment with  his doctor.  It was a Tuesday.  I called him from school to see how it had gone and he broke down on the phone.  Not much time they had said.  It could happen anytime.  His liver was failing and there was nothing they could do.  I left school immediately and met him at our house.  We sat together  and cried.  We cried for a long time.  He wasn't ready, didn't want to go, didn't want to leave me and the boys.  He just isn't finished doing what he wants to do.

Here we are, the beginnings of November, and the pit is still embedded in my stomach.  Most nights I am afraid to sleep, waking several times in the night just to listen to his steady breathing.  Most days I am afraid to leave, to be at school in case something happens.  As much as I have to be in school, to do well for the future of our children, I so wish I could just be home all the time with Kevin.  He is getting weaker every day, and the pain is increasing.  Through all of this he still has an enormous will to live, to survive.  He will never give up.  It is this incredible will that has us going to see Cirque Du Soleil on Friday.  Kevin is insistent that he will make it there.  He wants the boys to have this memory.  Here I am the night before wondering how we will in fact get there, but then I remember.  Sometimes you just have to believe.

Thursday, 14 June 2012

  Where has the time gone?  I can't believe it has been since February that I last sat down and was able to gather my thoughts.  As much as I try to take something from each day that passes, sometimes in the busy crazy mess that is life, it still manages to go by in a blurr.  I don't want it to. I remember telling my friend who recently got married to stop as she walked down the aisle and say to herself "remember this"....I find myself doing that several times throughout the day.

Kev's scan results in March were not great so we were led into the world of treatment options, chemo or what was called chemo beads.  The chemo beads are surgically implanted in the liver to give a more concentrated bout of chemo to the organ instead of travelling throughout the body.  It sounded good on paper until we found out that it would take the possibility of surgery off the table permanently as it would leave the bead casing in his liver.  Kev decided to go back on systemic chemo again, though this time a different drug, the neuropathic side effects of the last one still plaguing him.

There we were, back at chemo, familiar faces charmed by Tadhgan, at this time seven months old.  Most had not seen him since three months.  He did not disappoint, lighting a rather dark situation with his quick grin and mischievous nature.  Like he did in my belly, he kept me going those first months back, a bright spot to focus on.  kev was very ill right from the get go.  The second cycle he was sick in the middle of treatment with no respite for days.  He had five cycles before the last scan, and he bravely fought his way through them, scared but still so determined to beat this any way he can.

The last scan results were confusing.  Almost all of the tumours had shrunk, with the exception of one, which had minimal growth.  I don't know what this means exactly but I would be lying if I said that the word growth doesn't make me nervous.  Glass half full, I prefer to focus on all that had shrunk, to remember that this means that over all there is less cancer in his body.

We are now trying to see through the last few cycles of chemo, intertwined with the joy of what we call birthday season.  Quinlan turning 8, Cian turning 5 and Tadhgan turning 1.  It's all happening in the next three weeks culminating with my starting school on July 9th.  So much goodness to focus our thoughts on, just please don't be a blurr.....stop.  Remember this...........

Friday, 24 February 2012

Here we go again, on the merry-go-round that never seems to stop in the same place twice. Again my life has flipped over, or has it flipped back? I have lost track. All I really know is that I keep moving forward somehow.

It was some time after new years eve that Kev returned, to me and his family. He is back to being the Kevin I know, and for that I cannot express how grateful I am. We have put those two and a half months behind us, have decided together to move forward and leave that awful time in the past. I find it comforting that I have been able to forget so easily, but forgiveness comes easy when I know it wasn't really Kev making the decisions he did. Anyone who knows Kev could tell the difference between him and this other person he became for that period. The stranger is gone now, and that's all I care about.

With the return of my Kev came the realization that the cancer still exists. That has been a hard realization as it's almost like reliving it all over again. He has been off chemo since September, and the scans that were set for Feb. 6th were daunting to say the least. There was still the hope that things were o.k., and that the cancer had been held off somehow. We weren't in a dreamworld where we thought it was gone, but hoping for the best is just part of the game. I think without hope I wouldn't be able to handle the ride. There has always been hope, through it all. There still is. I truly did believe that the results would be good though, as we were to get them on Valentine's day. Love is supposed to win out isn't it?

The results weren't good. Though the cancer is still contained in his liver, the tumors have doubled in size, some even more so. His doctor was quick to point out however that he is not back at square one, the double measurement from their shrunken size, not their original size. Again I found myself in a hospital exam room with the breath sucked out of me, this time not holding my belly, but bouncing a beautiful baby on my lap. He was so beautifully unaware of his surroundings and of what was being said. I found myself listening, but staring at the baby, gravitating towards the pure goodness in the room. It made my heart hurt to watch Kev have to absorb this news. He looked so sad, but somehow not surprised. In some way he had been expecting it. He hasn't been feeling well, his right side causing him pain more often, his weight beginning to slip.

There are a few options chemo related that have to be discussed, new directions to be decided. It is another fork in the road and we are just hopeful that the right path will be chosen. In the mean time, we still focus on life. I have been accepted into teacher's college that starts this summer, a focus for the future. Most of all we focus on the present. If you don't, it becomes your past way too fast. This week marks our one year anniversary. A cancer anniversary. Bittersweet. Bitter because there is such a hard battle ahead of us, sweet because they gave him two months last year. Unlike last year, this week has been filled with family dinners, watching movies, spending time in the hot tub, laughing. We are spending our time better, cherishing this time always and will continue to do so.

Saturday, 31 December 2011

It has been a long, long time. Feels like a lifetime with all that has happened in the last few months. The game changers keep coming at me with a vengeance and I am doing my best to wade through the rubble they leave in their wake. I am not always successful.

It was about two months ago now that things took a turn for the worse in a way that I wasn't expecting. Kev had some sort of mental breakdown, screamed throughout the night, told me I was responsible for his cancer and that he wants a divorce. He was out of his mind and I could do nothing to stop the rant, nor change the outcome. He left that next morning and nothing has been the same since.

He did have another scan, which showed two new lesions on his liver and minimal growth, though this information came to me through reports I read, as he doesn't want me involved in his care at all. He proceeded to have the loop colostomy closed, his oncologist agreeing to this surgery with the warning that there could be further growth due to the delay from treatment while recuperating from the surgery. All of this to him is a non issue however, as in the state that he is in, he truly believes he is cancer free and no longer needs treatment.

I am truly trying to do my best in this very difficult situation, but can't seem to keep the hurt and anger away at times. I feel like I am in mourning, my life and family forever changed, and none of it for the good. I just want to shake him sometimes, bring back the kev I knew and loved, and send away this stranger that has taken his place. He is happier being this stranger right now, as this stranger doesn't have to fight for his life, this stranger can forget about 18 years of loving someone, this stranger has no responsibilities to anyone.

It is new years eve, and I sit here counting down the minutes until this year is finally behind me. Even with all the hurt, I still wish for peace in this new year that is upon me, I still wish for life and health for Kev, and the hope that he finds the peace he is obviously looking for. It really does sadden me to say that cancer was able to claim a life this year, the life that was my family. I will not however let it win, and I will rebuild, with my three beautiful boys at my side. So a very happy new years to all, and may blessings abound in this new and full of promise year...xo.

Saturday, 15 October 2011

Thanksgiving has come and gone and I find myself still trying to figure out the last game changer thrown at us. The last scan results were not what we had expected or hoped for. There was no change in the tumors. It was hard to take. I know that no reduction is not good, but no new growth is positive, so I hang on to that. I am also, like Kev, trying to digest all that this means. He has to take a break from the chemo, they are afraid of the neuropathy he has, afraid of it getting worse, afraid of it becoming permanent. The break is for two months, then he will have a new scan and they will re-evaluate. Kev wasn't prepared for the news, but I think he was more than ready for a break. The havoc that chemo has been wreaking on his system has had him scared, the pain of the neuropathy terrified. He wants to give natural solutions a try during this time. We are throwing all that nature has to offer at it. I find myself praying that it works, praying that the tumors don't grow back during this time. I don't think I can handle going back to square one, going back to the time where I was scared all the time.
It is so strange to realize what is now so normal for us. Thanksgiving with the family was sweet and fun. There was laughter in our house, beautiful pictures were taken, glasses of wine poured, turkey eaten. Intermingled in this normalcy was Kev disappearing at times to do different therapies, to rest. No one commented, all that were here were used to it, supportive. There was no need to ask what was going on, it was just our new normal. Strange. Even the kids find our behaviour normal, don't question it. It is freeing in a way though, Kev no longer feels the need to hide his ostomy from them, nor does he hide the therapies he has taken on. To them it's just what daddy does in between playing with them and helping them with their homework. Normal.
We had our cheque presentation at Wellspring this week and it was definitely bittersweet. The wonderful people who run this organization were very happy to accept the over fifty-seven thousand dollars raised this year at Ribbons of Hope, their programs and expansion needing the funding as the number of people needing their support has grown exponentially. My family is part of that growth, and I know only to well how much the support offered at Wellspring is needed, know it first hand. I hope that Ribbons of Hope will be able to survive not only the loss of Connie, but of Luise as she and her family embark on a new life in the Caribbean. I can't think now of what will be next year. I tend not to make plans too far in advance these days, but I do allow myself to dream of better days, of time with friends, of the milestones my children will pass through. Kev and I had a great conversation about how much we will enjoy spoiling our own grandchildren one day. It is the only way my mind allows me to see the future, and that's just o.k with me. I just have to remember that for every door that closes, one is opened, so here's to kicking that door down and running through with arms wide and eyes smiling. It's the way to LIVE.

Monday, 19 September 2011

Well, we got through the last chemo treatment of this cycle, and it went out with a bang, not a whimper. It was the first day of school, so I had to stay behind this time to take the boys. Cian started junior kindergarten and wanted mommy to be there even as excited as he was to finally be going to Quin's school. Kev's mom took him to chemo, but it was a rough go right from the start. He didn't want to go, was afraid of more side effects, afraid of the process, wary of the way the steroids that accompany the chemo make him feel. I try to understand, but I still need him to go, need him to continue the fight. It scares me when he says he's tired. Due to the long delays at sunnybrook I was able to join him for the last couple of hours of treatment. He seemed to be alright despite the bumpy start and we made it home without incident. As much as I always hope he won't be sick I am learning that that thought is futile. I was lulled into a false sense of security only to have that blown apart days later. I really had believed we has come through unscathed this time. We didn't.
September 10th was Ribbons of Hope day. I had my cousin come to look after the kids after their soccer cup day and made my way to Angus Glen. Raising money for Wellspring has always been important, but for obvious reasons, this year was much more personal. It was the tournament and auction that Connie, for the first time, was not there for. Her presence was felt, but sorely missed. It really scares me that someone like her who had so much fight, so much love, such a strong will could loose the battle. I ask the question why? all the time now. No matter how many times I ask however, it just isn't answered. I think I need to go back to Wellspring even if it's just to sit in the Ribbons of Hope peer support room. Connie's presence is very strong there, I always seem to leave feeling better, stronger. I spoke at the fundraiser this time, giving the caregiver perspective on Wellspring. It jut seemed very surreal standing there talking, that this was my experience. It made last year seem so very long ago, when my life was simple and Connie was laughing, passing me a glass of wine. Was it really just last year?
Scan day was Wednesday the 14th, and that was pretty uneventful. It seems like a cruel joke to make us wait until the 27th to get the results. Kev says he doesn't want to go to hear what they have to say. He wants me to go and then to let him know what happens. I know he will change his mind, that he's just frustrated with the process, knows the game changer is lurking. We know he had to go off this chemo, that the neurological effects were getting to bad, could be permanent. I think he's afraid of what comes next...what the next step will be. The path again is getting rocky. As long as we can keep our footing, hold onto each other to keep from stumbling, we have a chance of getting through it. I am trying to keep my eyes on the path, not to focus on the destination. I'm trying.