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.

Friday, 26 August 2011

I can't believe how much time has passed since my last post. Life has been a flurry of activity between chemo appointments and taking care of three little boys. Kev and I are at a constant sprint just to keep up.

Chemo started this round with a roar. We are still trying to figure out the right way to manage the meds so that he isn't sick. We weren't that successful the first round of this course and Kev was the most sick he has been, dry-heaving well into the early hours of the morning. It was one of the longest nights of my life so far. Tadhgan, sensing his daddy's pain, was up most of the night as well, leaving me bouncing from one to the other, torn in two.

Round two we decided to do things a little differently. Kev agreed to take his anti-nausea meds in the car on the way home from sunnybrook. I was hoping it would ward off any problems as taking it at home proved to be too late last time. It seemed to work and he had a pretty decent night all things considered. He felt so good that the next day he decided to come to Quin and Cian's soccer game. There was a chill in the air that wednesday, and the cold sensitivity he has kicked in with a vengeance. He smiled, said he was going back to the car to warm up. I sat there watching Quin play with Cian and Tadhgan at my side sad, knowing how much it hurt him to have to walk away from the game. I didn't know until my friend Deanna showed up at the field to pick us all up that Kev had gone back to the car only to be violently ill in the parking lot. He managed to drive himself home, again violently ill in the driveway and called Deanna for help, knowing he couldn't go back and get us at the field. It makes my heart ache to see how hard he has to fight every minute of every day, and how hard he works at protecting the kids from the horrors of this disease. The kids have normalized a lot of what goes on on a daily basis, only focusing on the fact that daddy is here, still gets breakfast, still kisses them goodnight.

It was a beautiful saturday in August that my friend Deanna got married to her lovely fiancee Steve, and I walked with her at the wedding as one of her bridesmaids. A magical wedding it was, made more so by Kev being there at my side. I watched him throughout the evening, laughing, smiling, joking. It was that rare night where I could forget what was happening, could pretend for a short while that everything was back to normal. We danced that night, and I will not soon forget the feeling of being in his arms on a dancefloor, sweet music filling the room. It was a gift that I carry with me and call upon when I am feeling sad and down. It makes me smile so I hold onto it with all my strength.

We have just come through another chemo week, this time feeling like we have found the right recipe for success. He has not been ill this time. It is a small victory in a series of battles and we'll take it. His doctor talked to us about taking him off this chemo, taking a small break and putting him on another cocktail. They are becoming more and more concerned about the neuropathic side effects he has been experiencing. We have one more round to go in this cycle, then the next scan. Then they change it up. Just when we feel like we got it right, there is going to be a game changer. I am forever reminding myself to be more hopeful than afraid and to keep my heart in the present. Life is about the journey. It isn't the end of the road that tells the story of our life, it's the road itself. I have my seatbelt on, it's one hell of a bumpy ride right now......but we're holding on.............

Saturday, 23 July 2011

Today was a day filled with laughter and then tears. The last few weeks have been a roller coaster of emotions, and keeping up with life and all it has thrown at us is certainly taking its toll. Chemotherapy on the monday before the birth of our son was thankfully uneventful. We were fortunate enough to be looked after by three of our favorite chemo nurses who sent us on our way after the hours long treatment with hugs, kisses and well wishes. Kev paid strict attention to how he was feeling this time, and headed off nausea with the meds he was given, very motivated to be feeling well by thursday, to hold his son in his arms. There was no issues with him being unhooked from chemo on the wednesday, and we both fell into an exhausted sleep that night, excited about what was to come the very next morning.
The drive to the hospital in the wee hours of the morning was a quiet thoughtful one. I was starting to get nervous of the surgery, nervous that the baby was alright, nervous about the recovery and how it would affect how I care for my family. I was in good hands I kept saying to myself as we walked in. I was. My sister Maryellen was there to see her new nephew just minutes old, she wasn't for the first two, my cousin Karen was there to scrub in, a fantastic nurse who means the world to me, she was to be three for three having helped deliver the first two as well, and Kevin, my love and best friend who I had been so afraid would not be here for this occasion. I really needn't have worried, it was beautiful. It seemed just minutes after going into the operating room that they were telling us we had a beautiful baby boy. He was a miracle to look at, my eyes wide with wonder. They do the skin on skin practice at the hospital, and because I was unable to hold him at that time, they had outfitted Kev with a gown and had placed the baby against his bare chest, in his arms. To see this beautiful child snuggle up close to his father, Kev talking quietly to him, telling him how much he is loved was amazing, and the tears that came then were of pure joy. We were both crying happy tears, the chemo a distant memory, Tadhgan was here and now the focus.
Kev spent as much time at the hospital with us as he could, but having two little boys at home, he really had to split his time. I was however fortunate enough to be able to go home twenty-four hours later, the surgery went that well, and I was up and about and raring to go. Tadhgan Kevin Stem, 8lbs 10oz, born July 7th 2011, came home on the 8th, and has just fit into the family like he has always been a part of us. Quin and Cian are in love with their little brother, always making sure he is alright, never passing by without kissing him on the head.
July 8th not only was the day I brought Tadhgan home, it was also scan day. Kev went with his mom, I wasn't able to go, and that upset both of us. I really wanted to be there for him, and he really needed me there. The scan done, we were left with the waiting game, July 18th would be result day. The next week was spent doing just that, waiting and biding our time. Both of us were pretty hopeful that the results would be as great as the last time, that the idea of surgery would be revisited. That monday we woke up nervous and scared. Kev was so wound up about it he was sick, nerves and fear are a horrible mix. The results we got were not the spectacular results we had hoped for, though to keep things in perspective, there was still reductions in his tumors, including the primary. The disappointment came with the fact that the discussion of surgery was still very premature, and that chemo would start again this coming Tuesday. It was also hard to hear that they would have to reduce the strength of the chemo because the neuropathy Kev was experiencing in his hands and feet was getting worse, and could eventually affect his walking and his grasp. We were quiet and pensive on the way home, trying to digest what we had been told. We have come to the conclusion that the terrible road that we are on is just longer than we had thought, that the nightmare continues to rage on, but we haven`t been beaten. Talking to my belly was one thing, but now Kev has this living breathing beautiful reminder of why the fight will continue with a vengeance, why the war has to be won. Despite all the ups and downs, neither of us will accept any other outcome than growing old together, watching our children grow.....together.

Friday, 1 July 2011

Life goes on, and it is a very busy time for us. It doesn't help that I feel like I am treading water on a river that sometimes moves faster than I can keep up with. The river's rapids keep pushing me under water, but then I seem to pop up and tread again successfully. It's a very unsettling feeling.
Father's day was an amazing gift in our house. The boys had made Kev special gifts and cards that came from their hearts and we spent the whole day with family. Kev seemed to have an abundance of energy, and was more like himself than he has been. As always these days, we took lots of pictures and when I go back and look at them they make me smile. It all looks so normal, so right. The pictures leaving out the worry and strain, only showing the love and the happiness. I will always cherish them.
Chemo week number three came with a lot of trepidation, mostly due to the mistakes made last round. It went off without a hitch though this time, and leaving the hospital Kev felt really good about things, felt almost healthy. Unfortunately it didn't last. We were home only a short time when it hit him, and it hit worse than I had seen yet. He was violently ill for hours upon hours. I had to call the hospital to ask the oncologist what to do. I was frightened. They insisted he would have to come in if it didn't stop, if he couldn't take water. He couldn't become dehydrated, it would compromise his treatment, it could be very serious. Kev didn't want to go, and promised me he would try water. He was finally able to sleep, exhausted from the dry heaves that had racked his body for hours. I woke him intermittently and pretty much forced him to have the water, but he didn't argue, didn't fight. He knew how important it was. We made it through the night, but for the next few days the nausea persisted and he was sick again. We had been told that chemo is accumulative, that the side effects could rear their ugly head at any time. They weren't kidding. I do believe we are lucky that this happened in round seven. Had it been right from the get go I don't know if Kev would have ever gone back. It truly was an eye opener of how blessed we have been.
This past off chemo week has been filled with kid stuff to keep our minds off of what happened. Kev's energy still wanes, and he has developed some sort of infection in his throat caused by the treatment, but again we are treading water and our heads are above the surface. Cian graduated from nursery school, Quin received his yellow belt in judo, Quin turned seven and Cian turned four. Birthday parties and a baby shower have made this week go very quickly, with wonderful memories and a great dose of happiness. These are the things that are bolstering Kev's spirits, and putting the fight back in him even when he breaks down and sobs, which still happens in the quiet of the night.
Here we are again, looking down at the final chemo week. This time the prize at the end is the birth of our little boy. Kev and I will be at Sunnybrook on Monday, and we will get through whatever happens together . His nurse Kay will come and unhook him from the chemo on Wednesday, and Thursday we go together to the hospital to welcome this gift of a child into the world. To me, as it is the end of this round of chemo, it is a sign of new life, new beginnings. One cold day in February, not so long ago, we were told Kev was sick, that there was a good chance he would not be there to see the birth of his child. I want those people to know that he will be the one holding his son with the big smile on his face in case they don't recognise him.

Wednesday, 8 June 2011

The in between chemo week flew by without incident thankfully. Kev got some of his strength back and his spirits were up. It is truly amazing how much the spirit can affect a persons ability, both physically and mentally. It has become apparent that succumbing to the sorrow your heart feels does no good, that being positive and believing in that positivity is as essential as the chemo they drip into his arm. This is the thought I carry with my every hour of every day. Most of the time it is successful.

Monday night, the day before chemo was as usual a fitful sleepless night for Kev. For someone who hates hospitals and needles, the anticipation of what is to come fills him with fear and anxiety. It has never eased, even with the last scan result being positive. Chemo is a glaring reminder that the war has not been won, that the battle continues. It takes all of our energy and focus to get through it. I am thankful the boys are well looked after during these times so that they continue to be rather unaffected by the roller coaster of emotions both Kev and I are feeling.

Unfortunately, Tuesday was a hard day. Chemo was delayed by hours, and the process usually followed with care was not. Mistakes with administering the chemo were made, one resulting in the need to access the port in his chest twice, the other more serious, almost resulting in rendering the chemo unusable. The latter was caught by me. Short-staffed, there was a temp nurse who was unfamiliar with the protocols usually followed by sunnybrook. I pointed out the error to one of the nurses who is always on the ward and she fixed it, upset that the chemo had almost been compromised. They do take their jobs very seriously so she was understandably frustrated that someone brought in to help could undermine the job they very obviously do with expertise and care. It made me very aware of how well I have learned the language and process of chemo, and how important it is to have an advocate with you when you are having any procedure done. A second set of eyes........

We didn't get home until 8:30, again a very long day. Tired and over emotional, as I lay in bed I heard Kev sobbing in the bathroom. Sometimes it seems to be too much to bear. I lay there praying that he would remember his strength, remember those who are behind him, propping him up to continue the battle. I lay there with tears streaming down my face, hoping that when I awoke we would be o.k.

I woke up feeling stronger, the tear-stains on my face a gentle reminder that the battle was still being waged but the strength of knowing we can still win this war. We will win this war.

Tuesday, 31 May 2011

Yet another week has gone by, and even as they feel like they are going slowly, the calendar is saying differently. Kev started another round of chemo this week, and it made for a week filled with ups and downs. We had the joy filled two weeks in between chemo to relish in the good news about the scans, the smiles on our faces a permanent happy fixture. Even the fact that another round of chemo was set to start didn't rain on the parade.

We definitely did have a lighter step as we made our way to sunnybrook on Tuesday. It was nice to go there having the feeling that the treatment is working. The first round we just hoped it would, didn't know for sure. How soon we forgot how much the chemo treatment could kick you down though. For the first time in a blissful week Kev felt tired, nauseous and just generally crappy. Both of us put on the brave face, armed with the knowledge that it has been working. It did help. We got through it together.

Wednesday Kev was feeling stronger and insisted it would be a good idea to take the boys to wonderland when Quin finished school. I think it is his way of continuing the normalcy he wants for the boys. It was almost comical. Every ride we approached had the sign that said you can't ride this if you are pregnant or have had recent surgery. That ruled both of us out. What a pair we are.

By the end of the week I was reminded of all the wonderful people we have around us sending us good wishes and doing little things to make life a bit easier to get through. It all culminated in my best friends presenting me with some money they had raised to help us out without my knowledge. I burst into tears, happy tears that some of the financial pressure is off for awhile, but sad tears that we needed the help. Kev and I are both fiercely independent and have trouble accepting help, but are recognizing that in accepting this help, it just means a bigger commitment to helping others when we are able.

So much will be happening in the next few weeks, our two issues, Kev's cancer and my pregnancy collide in thirty seven days. On July 5th, Kev will have his last chemo treatment of this round and will be unhooked from the chemo on July 7th. It is on July 7th that we will welcome our new baby boy into this world. Hopefully it is a sign of new life for all of us...I'm just glad that Kev will be there to hold my hand as he has been twice before.

Thursday, 19 May 2011

It was a crazy week. We started out with the scan on monday, and both Kev and I were anxious when we arrived at sunnybrook to have the procedure done. Like all other times we have spent there, it took way longer than we had expected. Hours longer in fact. Neither of us could decide if we were happy or scared of the results. We didn't know how to feel at that point.

In the next days Kev was scared. He was about to get a new set of answers, life and death answers, and this hung over both of us like a dark cloud making us over emotional about even the smallest detail of our lives. On tuesday Kev took both boys to school, came home and sobbed in my arms for the first time since this whole ordeal began. It was hitting us, the fact that we had done all we could do to change course, it was out of our hands. The weight of it all was getting harder and harder to bear. He could no longer put on a brave face for me. It brought us closer to realize we were both in turn trying to protect the other. Standing in our kitchen, clinging to eachother, sobbing together did more good than harm.

Somehow we made it through the weekend. It really was cruel that we had such a long wait. Test results hadn't been going our way, the last time we sat in the doctors office to listen to results it was catastrophic. When the leafs are losing, many fans like myself are inclined to change things up, put the jersey on backwards, change the karma. Was it crazy then that when I woke up that tuesday morning I put on a piece of clothing inside out? I think not.

Again a long wait ensued, but this time it was worth it. The doctors were smiling. It was good. There had been a significant reduction in all of the tumors, between thirty and forty percent. It was an above average response to treatment that they couldn't exactly explain but they would take. We both felt like we were walking on air as we left, the good news replaying over and over in our heads and out loud. As I write this, neither of us have stopped smiling.

They want another round of chemo. Hopefully the results from this round will be duplicated. It is then that we will have another scan and hopefully talk to the surgeon about cutting the rest of this disease out. Palliative is out, life is back in. Chemo starts again on tuesday, but this time I will have a slightly lighter step when on my way to sunnybrook....maybe even a little smile on my face.

Monday, 9 May 2011

The final chemo week is behind us. I find it hard to believe that this much time has passed. When the day came that marked two months since diagnosis, kev and I separately had little celebrations in our minds, but only admitted it to eachother a few days ago. Originally they had given him two months, and here we are now, passed that dreaded point, his colour looking better, his energy up. I have to admit it makes it hard to trust doctors sometimes. At least the doctors he deals with now don't mention things like time lines and life spans. They seem to know better.

This week hasn't been without drama however. They did warn us that as the chemo accumulated in the body the side effects could become worse. They weren't kidding. Kev was very ill this time. In our sixteen years together I have never seen him so violently ill. It did finally subside, but the nausea came in waves over the next few days, relentlessly picking away at his energy. The neuropathy was back as well. The numbness in his fingers as well as the what can only be described as electric shock like sensitivity to cold. It was imperative that he only drink warm beverages, as the cold sensitivity could cause his throat to constrict. It was a nightmare.

It is monday, and the nausea has passed, but the neuropathy continues, though less than the last few days. We are still hopeful that it will completely disappear, that is a possibility. Today is scan day, and both of us are nervous. There is so much riding on the outcome of these scans. It is what will dictate our next moves, our direction. My mind only allows for one outcome, Kev's mind has the same limitation. I prefer to focus on the fact that in fifty eight days we will be holding our beautiful Tadhgan in our arms. Quinlan and Cian are excited about their new baby brother. He has managed to kick them both by now, and that has them fascinated and amazed. It is really wonderful to hear both boys talk about all the things they will teach the baby. It seems they already love him as much as kev and I do. It is these things we are focusing on when the future is brought up. Nothing else. That way the future is not tainted by what ifs, but what will be's, and that's just better for now.

Wednesday, 27 April 2011

Another chemo week done, one more to go. At least it semed to go by quickly. We have the air about us that says we know what we are doing when we arrive at sunnybrook on tuesdays. It has become part of the norm, part of the schedule, like soccer practice or judo class. Sometimes I find myself shaking my head, amazed at what has become normal. I find it strange that I can talk about Kev's cancer without breaking down now, the river of tears that would flow for that subject finally drying up. It has been replaced with facts, appointments and results. A strange detachment from the emotional turmoil. That emotional turmoil still bubbles just under the surface though. I can feel it when I allow my mind to think beyond the chemo appointments, beyond the next set of scans. I don't allow my mind to think of those things. It's just safer that way.

A few side effects popped up enexpectedly this time. The neuropathy they had warned us about reared it's ugly head for the first time. It started with tingling in his fingers, then to numbness, then to temperature sensitivity. He can't remove things from the fridge without getting a zap, and it caught both of us by surprise. He is also dealing with some skin issues we weren't expecting. Chemo bumps and splitting of the skin. He has it on his ankles and on his abdomen. They gave us special cream, hopefully it will help.

Easter weekend went off without a hitch. We spent the friday at Kev's parents farm with the kids. Everyone was there, his brother, sisters and all the neices and nephews. It was great to see the kids on their egg hunt, laughing and playing and having a good time. I found Kev very relaxed that day, very calm. It was nice to see. My family came over to ours for friday night, and that too was relaxed and easy. The rest of the weekend was spent with just the four of us together creating memories. It was special as all family time has become. We don't take it for granted, the time together, even if it is just sitting on the couch reading a story. It isn't just the holidays that create the memories, it's the time spent listening, laughing and playing. Those are the things I remember from my childhood, not the "special occasions" that seem to all run together in my mind. Quin always talks about the things that he and Daddy do together on a regular basis, the bus rides, the swimming a few times a week, the wii game they beat. I guess it just means that it is all special, it doesn't have to be created, it just happens....let it.

Monday, 18 April 2011

Another week has gone by, and though the time seems to be moving at a normal pace it still seems slow in my mind. There are two dates that are looming, creating this snails pace that I am living in, one being Kev's new scans, the other the birth of our third child. Both events are momentous, both will dictate the direction our lives are moving in. Kev has been, dare I say, better this week It was again an off chemo week so my hopes were high that he would experience the baby steps forward we have come to rely on. He did. His colour is better and it looks like he is gaining weight...his face not as gaunt as it has been. We have settled into some sort of routine, each of us wading through daily life all the while ignoring in some ways the elephant in the room. We have taken to talking not of the cancer, but of life. Our conversations are not about meds and appointments but of hopes and dreams. We talk about future projects, upcoming events, the warmth of the coming summer. Neither of us are hiding away from reality, it just seems like we have both come to the conclusion that we are doing everything we can to fix this cancer thing, and that the answers we are seeking will be here soon enough. May 9th, the day they re-do the scans, will be here whether we focus on the date or not. I know for me, not focusing on that date has helped me regain some of my sanity. My heart believes it will be a day of celebration. I cannot afford to think any differently. My mom is experiencing the same baby steps. She is breathing on her own, and they are trying to get her out of ICU and into a normal room. She actually walked to the nurses station and called me with their phone. It was great to hear her voice. It is monday, chemo looms in front of us, round three tomorrow early in the morning. I will take some of this lightness in my heart with us as we again work through the drip, hoping and praying that these baby steps forward continue. It is where our thoughts have to be.

Sunday, 10 April 2011

Sunday again, and how I long for the easy days of my former life. I can't believe how difficult I thought it was to organize two little boys off to school in the morning. That is now the easy part of my day. It was another chemo week, and it started with peaceful calm, the smoothness of the last treatment in the forefront of our minds as we made the trek to Sunnybrook. Kev felt better, stronger and more assured. We know the lingo now, can speak cancer and med, and know where we have to be and what to expect. It doesn't make it a faster process however, so we were there again watching the slow drip go into his chest port for what seemed a lifetime. In reality it was five and a half hours. Again they finished with the first part, hooking up the bottle that would accompany us home. This time we were prepared with the canvas bag that would hold the bottle securely to his side. Much better than the make-shift bag we had to contend with last round. Dare I think that things are looking up? I should know better by now. It wasn't as easy this time. The waves of nausea washed over Kev for hours, stretched into days. He was very weak and exhausted. He slept for the better part of the next two days. Thankfully I had the support of his mom who came to sit with him when I was out with the kids. Keeping their lives as unaffected as possible is becoming more challenging, their questions becoming a little more frequent, a little harder to answer. All I have been able to say so far is that Daddy is sick and that we are trying to fix him. They have now accepted the fact that nurse Kay comes to help Dad's tummy, Cian even going as far as watching Kev as his colostomy bag was changed and the chemo bottle unhooked. He seemed so unfazed by it all, matter of fact in his fascination. At the end of it he simply stated that Daddys tummy was better for now, then looking up at Kay said "I'll see you next week". In the coming days Kev got some relief from the nausea and started to feel better. He looks like he is gaining a bit of weight, though his energy is still so low. I have to focus on baby steps. It worked in the movie What About Bob, it'll work for me. My mom is doing the whole baby step thing, and it seems to be working for her. Today is Sunday and for the first time in a long time I got to see her. She was still on the ventilator, but awake. I sat with her for a few hours holding her hand, telling her stories of the boys, assuring her that Dad is doing well, just catching her up. They hope to take the ventilator out tomorrow morning. I find myself longing to hear her voice. Baby steps. It'll work for long as the baby steps are going forward I don't care how small they are.

Sunday, 3 April 2011

It's sunday, and I think things have finally quieted down for the moment. For an off week, meaning not a chemo week, this one has been filled with it's fair share of drama that was not needed or welcomed. I do believe my life has become a very badly made t.v. movie and I can't seem to shut it off. Tuesday I knew was going to be busy. Kev had an appointment with his oncologist and my dad was set to be released from the hospital, the infection in his leg finally under control. It went as smoothly as these things could. We had a relatively uneventful meeting, no side effects from chemo, no weight gain but no weight loss either, scans booked for May 9th after three more rounds. All this was expected. Thankfully this time there were no surprises. I took Kev home and got him settled, then went to my parents place to get the kids. My brother had picked them up from school, dropped them off to my mom, then he went off to the hospital to get my dad. By the time I arrived, they were all sitting down to dinner, everything was good. Two days later that ball that I've been avoiding lately dropped again. By thursday, my mom was very ill, deliriously ill in fact. My immobile dad did the only thing he could think of to do, he called an ambulance. They took her to York Central with a serious but unknown infection. All I could think was that this was some kind of joke, an unfair joke someone was playing to see how much one person can handle before breaking..snapping. It took them three days to figure out what was wrong with my mom. The diagnosis was Strep A infection, very serious. This is the infection that can develop into what is known as flesh eating disease. It was well on it's way to becoming that very thing. They believe they caught it in time, the call my dad made to 911 most likely saved her life. I shouldn't have been shocked to get the call from the public nurse telling me that we had all been compromised and must go on antibiotics as a preventative measure. This was especially important because Kev was immune compromised as it is. Really?? Seriously?? I said that out loud, looking up at the sky, needing an answer. I didn't get one. This week coming is another chemo week. I am afraid to ask the question of what could possibly go wrong, so I don't. Come on Cath, pick yourself up, dust yourself off and continue to walk forward. It's all I can do.

Friday, 25 March 2011

This week started relatively quietly, and I have to say I was pretty thankful. I had an ultrasound appointment on monday, and I was nervous about it. The baby needed a double check to make sure everything was o.k., and naturally I was concerned about the amount of stress we have been under, as well as the emotional distress. Though I haven't received the final report, it seems Baby Boy Stem is fine and relatively oblivious the turmoil around him. He seems to have a pretty chilled personality and the same soccer kick both his brothers were famous for.

Tuesday was the day Kev and I were both dreading. Chemo day. The unknown of it all had him paralyzed with fear and me edgy and emotional. Not the best combo, especially before sunrise. Kev's mom came down to take him to Sunnybrook so that I was able to take Quin and Cian to school. As I hugged him goodbye, I promised to be there before they started the actual chemo, I promised he wouldn't go through it without me. I just really wanted to keep that promise, I was counting on the tests that would come first and the slow motion hospitals seem to work in on a regular basis to buy me time to get there.

I arrived two minutes before they called his name. The idea of good karma was on my mind as we walked down to his room. He had a bed there, and a little chair for me. He laid down and the nurse came over to access the port in his chest. While holding my hand, they started the chemo. We were there for five and a half hours, the drip going into his chest slow and steady. Near the end of it, Kev was feeling better, brighter. It hadn't been as bad as he, or I for that matter, had imagined. They hooked up yet another bag, telling us it was the chemo he would bring home. Thursday the nurse would come to unhook him. Three days.

The next few days were spent managing all the meds and side effect preventing methods given to us. I have to say he came through it like a champ. No obvious side effects to contend with right now, no nausea. It was a great outcome, he was tolerating the chemo pretty well. That in turn lifeted his spirits, made things easier to take, made the fight more plausible. Kay, his nurse came in on thursday afternoon to unhook him, remarking how much brighter he looked. Hopefully it is the sign of things to come.

I am feeling more hopeful these days. I know the road is long, but on the flip side I'm glad it won't be short. Round one down, seven to go. The thoughts and prayers coming our way are serving us well and one day I hope to say that they accomplished their goal...that we accomplished our goal.

Sunday, 20 March 2011

It's been a long week, but I guess I shouldn't start out that way as the weeks are all seeming long these days. Kev was feeling better after the rods and stitches came out on monday and he seemed to be gaining strength which is what I wanted and needed to see. We decided that the tickets we had for Disney's Toy Story on ice were going to get used after all, and that we'd be able to go as a family. It was really nice to do something "normal", though even normal was different. There I was walking in front with my portruding pregnant belly making sure nobody bumped into Kev. It worked, but bothered Kev...he wanted to walk in front of me to make sure I wasn't hit by the throngs of people. The show itself was great, the kids totally emmersed in the story and the characters, eyes wide, faces smiling. As it is becoming my norm, a tear slipped down my cheek watching my family doing something that wouldn't have garnered a second thought just a few short weeks ago. It became a very special outing.

After getting out for a few short hours on thursday and being overwhelmed by the love and support my friends showered me with when I entered the pub for the first time in a month, my alarm early friday morning was not a welcomed sound. Port day. We had to be at Sunnybrook by 9:30 so that they could surgically implant a port into the veins in Kev's chest to make it easier to administer the chemo. It was to take an hour and a half they told me, so I went walking, not able to sit and wait. Waiting is still not my strong suit.

Again I felt myself being drawn to Wellspring, determined to find answers, bolstered by the bright sunlight. I walked in feeling strong and asked for information about talking to kids about cancer. I found myself amazed to hear my unwavering voice say the words aloud. Then came the pamphlets, the questions, the more detailed explanations. It was over, my determination, my unwavering voice, my strength. I was gently ushered from the entrance to a more private place. I sat in the Ribbons of Hope peer support room pouring my heart out, opening up my soul, saying aloud all my fears. I cried too, seemingly endless tears fearing they would never stop. But they did. It was then that Icould finally take in the information given to me, the offer of support, the help I was so desperately seeking. Again I left there feeling better, lighter, slightly more able to cope. It was time to get Kev and go home.

I wished they had told us, or warned us that the port would be so painful. It was all fine and good when the anesthetic was still there, but once that wore off the pain was glaringly obvious. Kev is so thin that the pocket needed for the port was created by stretching already thin skin thinner. I have had to resign myself to the fact that this process is going to be a continuous variation of one step forward two steps back. I just hope and pray that the steps forward one day out number the steps back. It's friday the 18th of March, my birthday. I have only one wish but fear saying it aloud in case it won't come true. I really need it to come true.

Tuesday is chemo day. We both fear it, the unknown of it all, but the need to move forward in the treatment plan, to see results is strong. In in my weakest moments the glimmer of hope is still there, that we will be able to beat down this beast and regain our life. Forever changed however is our appreciation for life. Perhaps that is one of the good things that will come from this.

Wednesday, 16 March 2011

Things seem to happen on mondays. We had to go to the hospital for chemo class. It is a class set up for impending chemo patients, to learn about what to expect, timelines, side effects etc. I guess it's better than going in blind but we sat in that auditorium alittle dumbfounded that we were in fact there. Very surreal.

Kev's mom was with us too, so after chemo class, we went to the follow up with Dr. Tan and Dr. Ko, his medical oncologist. Dr Ko explained the chemo regiment to will be folfox every two weeks for three days. This will be an eight week course, then they will re-evaluate, do new scans, see how it is working. A port will be put in on friday to administer the chemo. It is surgically implanted in the chest just under the skin to avoid being pricked each time Kev has chemo. He will have the port until chemo is no longer necessary. The chemo itself starts very early monday morning. We are daunted and very scared.

Kev's mom was kind enough to take him home while I went to visit my dad (another story) and then, as I was parked near, I decided to go to Wellspring. It was strange to be there looking for information instead of being there for cheque presentations after our fundraising golf tournaments. Ribbons of Hope has been raising money for Wellspring Sunnybrook for the past five years and now I was there looking for their special brand of support. It was after hours but the volunteer let me in. I again started to sob thinking of how I was going to tell our children Quin and Cian that daddy was seriously ill...I didn't know where to start and clearly can't say the words aloud without breaking down. The volunteer sat there quietly, letting my tears come in torrents down my face, not saying a word, but holding my hand. I stood up after awhile, still crying, and asked to see the Ribbons of Hope peer support room. She led me to the room and as I looked in, I felt calmer, more able to handle what is to come. It was as if our dear friend Connie, who had just succumbed to this horrible disease was there in the room she helped build, as if she was there to comfort me and tell me it will be alright. I left Wellspring with Connie's strength and courage on my mind. I hope I can make her proud.
The tuesday after that initial monday meeting started with a bang. We had been in the emergency department at Sunnybrook all night. They wanted to do surgery on Kev as soon as possible to prevent the impending colon blockage from occurring. We had gone home only to return at 10pm that monday evening, and by 3:45 am they had done their own tests and scans in order to proceed that morning. I kissed Kev on the forehead and told him I would see him in a couple of hours and headed home. I needed the time in the car to let out some of the emotions that I had been holding in in order to be strong for him and the kids. I sobbed all the way home.

I was back at the hospital the next morning just in time to hear his name called for surgery. His surgeon Dr. Tan was with him as I entered his room, explaining exactly what he was going to do and why. He was patient and kind and answered all of the questions he could, making us both feel more confident. It was to be a tumor bypass, hopefully done laproscopically to minimize any recovery time. They wanted him to start chemo right away, and a full surgery to do the tumor resection of his colon would need too long a recovery time. The chemo just couldn't wait, though they didn't want him to have a blockage during chemo either. This surgery was the compromise.

I walked down with kev being wheeled beside me towards the operating room area. Both of us were silent, pensive. When we got to the place where I could no longer go with him, I leaned over to give him a kiss, willing all the positive thoughts and prayers from friends and family that had been pouring in to wrap around his heart and keep him safe. Then, I waited.

It was the longest three hours of my life, though I did not have to pass the time alone. Kev's mom was with me as well as my friend Deanna who coincidentally works at the hospital. It was still a long wait. Dr. Tan was kind enought to come find me in the dining area when the surgery was over. He was relieved that it had been done as the blockage was already occurring. It was also a successful bypass, the tumor not invading other organs as feared, just the liver to contend with. The fever he had post op. went down and it was time to go into recovery mode.

Only two days in the hospital after surgery and Kev was itching to get home. He couldn't sleep there and the food was not helping matters either. They agreed to let him come home as long as a home care nurse was in order.

For the second time in two weeks we packed his things and walked hand in hand out of the hospital.
So we went to Sunnybrook. We both needed a second opinion...couldn't stand the first one nor could we accept it. It was different there. They were very supportive and had a team approach where we saw a liver surgical oncologist, a colon surgical oncologist and a medical oncologist all at the same time. I was happy not to have to wait for more appointments to occur. We just didn't have the time.

They looked me in the eye and told me that they would not give up...that Kev was an otherwise healthy 39yr old with a young family and that they would do whatever necessary to help him. For the first time in two weeks I felt my breathing go to heartbeat slowing and the panic that had settled in my throat start to subside. It was a monday.
Kev was miserable in the hospital. He was scared and despite me being there almost all of his waking hours, he missed his boys, he missed his life.

The colonoscopy showed a large tumor in the sigmoid colon that was near obstruction. The metastises in his liver were extensive. We still had hope. Take the tumor out of the colon and resect the liver. I told him he was lucky that it was a regenerating organ that had this, that we'd be able to beat this.....

Little did I know, another ball was about to drop.......

Too much disease in the liver they said, no surgical options, chemo would be palliative.

I sat there looking at this surgeon, again the sounds of my world crashing down so loud all I wanted to do was run. I didn't. I sat there holding my belly praying the little ears of our unborn child couldn't hear what was being said about daddy, tears streaming down my face. It was then that I got angry. How dare they tell me there is no hope.. how dare they imply I will be a widow in two dare they tell him he probably would not be here for the birth of our child.

I screamed.....I screamed profanities...then I grew quiet. Kev and I walked to his room, gathered his things and walked hand in hand out of the hospital.
It all started a few weeks ago. My husband Kevin started complaining about sore ribs. He thought he had fractured one at some point playing with our three year old and our six year old boys. It was the middle of the night on a sunday when I made the call to my brother asking him to accompany Kevin to the emergency department to have it looked at...the kids were sound asleep and I, being four and a half months pregnant with our third child, was too tired to go with him.

When I woke at seven a.m. the next morning, they were still at the hospital. They wanted Kev to have an abdominal ultrasound. I called my mom to be there for the kids and got myself to the hospital. Finally by ten a.m. he had the test done. It showed dark spots on his liver. That meant more tests..a CT scan to see what was going on more clearly. We were both exhausted but at this point still thinking it had something to do with the wheat and gluten allergy he had been suffering with or the bouts of IBS he had had sporadically over the last fifteen years.

We were still making jokes about the movie Naked Gun and organ donor cards.

The CT scan results were given to us separate from the waiting chairs we had spent most of the day in, separate from the people we had been talking to to pass the time. We were taken to a private area. I remember hearing the words cancer, colon, liver mets and biopsy but my head was spinning and my world was crashing down on me so loudly that I couldn't quite make out the other words being said.

By the time the dust cleared, Kev had been admitted to the hospital for a colonoscopy and biopsy and I was sent home to gather his things......