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 rash....red 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 me...as 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 us...it 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.