Things have been moving along here as we get geared up for Christmas. This week has been full of Christmas baking, kids concerts and planning our holiday get togethers. I really feel like we need a nice, peaceful holiday and not a holiday where we are running so much that we don't have time to look around at what is truly most important to our family. I am looking forward to a Christmas with less fuss this year. Jeff, once again, finished up our shopping early so we just need to do a few last minute things which is so nice. Very happy to have a husband who doesn't mind shopping and is happy to jump in and make sure the boys are happy at Christmas. When I look back at the last few Christmas's, we have really had to simplify things. I havn't been up to doing my usual all day shop-a-thons and baking sessions. It's actually made Christmas a lot nicer and more relaxed so maybe this is a tradition that we will keep up in the many years to come.
I am recovering very well from surgery. It's hard to believe that it's been 6 weeks already. I went and saw my oncologist on Wednesday and everything is just as we expected. We spoke alot about different treatment options but none of these are available for me at the present time. Although, it's nice not to have to go for chemotherapy or radiation it is also disappointing that this is because there is no such treatment available for people with this type of cancer. (stage IV metastatic melanoma) It's not that I don't need any further treatment but that there is nothing available. So we wait. The chances I will have another recurrence is very likely and if this does happen then hopefully once again it will be operable. Every day that I remain "No Evidence of Disease" I look as another day for treatment in this area to advance and for someone to finally find a cure.
It is very difficult some days to remain optimistic and hopeful especially after another recurrence. This last return has been extremely difficult for all of us. It has reaffirmed that this isn't going away and has become almost a chronic illness. I have recently had many times of feeling scared, angry and upset that we all have to deal with this. I sometimes find it very difficult to even go to the doctor. This past week I would have rather scrubbed toilets than go back to Cancer Care. I almost had a panic attack the night before dreading this trip in. This may not only have been because I sometimes just get so tired of going to the doctors but also because this was my first time going back to see my doctor since we lost Earl. Earl and I both had the same Oncologist looking after us and it brought up alot of sadness for me going to see him again. I miss him so much. Jeff came with me and this comforted me and I was able to get through it just fine. I left there having all of my questions answered and also like we had some sort of plan for my future treatment. Although, I don't like to plan too far away I also need to know that there is some sort of plan there.
I feel very grateful that I am still able to be out and about living life in an almost "normal" way. I'm able to get out of bed every morning, do every day activities and still get alot of joy out of life. A trip to Cancer Care can sometimes make me realize how fortunate I really am and that I had better not take that for granted. So, since I still have a couple of weeks before I go back to work I am really going to enjoy the season and spend lots of time with my family really feeling blessed for what we have together.
I wish all of you a very Merry Christmas full of love and joy and a healthy and happy 2012!
Saturday, December 17, 2011
Thursday, December 1, 2011
Latest news...
I am super excited to share my most recent results that I got back today. I decided after finding out that I can't get in to see my oncologist for another two weeks to at least try and get my brain MRI results. My gamma nurse called me back this morning to let me know that it came back stable! So happy to hear this news since I have been stressed and worried for the last several weeks about what was going on up there. I think that having this whole issue with my lungs again has just re-inforced that it can and will pop up anywhere at anytime. My medical staff seem to be happily surprised whenever my MRI results come back stable so this is great but it also tells me that this isn't the norm and I worry about how long it will remain this way. Not long after I returned to work I started having some headaches again. I tried to ignore it and put it down to being tired and just having to get used to working full time again. Of course, in the back of my mind I was wondering if the stress of returning to work and being busy again would cause my body to cave and relapse again. So happy to know that this is not the case and maybe I am tougher than I thought. I have to find some sort of trust in my body again that it will do what it needs to in order to keep those nasty cells from multiplying again and turning into a tumour.
It is definitely hard to wait for results ESPECIALLY WHEN YOU KNOW THAT THEY ARE SITTING IN YOUR CHART. It makes me feel that the system is failing me and that they are not as on top of things as I had hoped. I know that my pathology is going to come back as metastatic melanoma (apparently they could tell since it was black) but I have several questions about it like: how big? any lymph nodes affected? what now? I am very anxious to get in to see my doctor to have these and many more questions answered. I decided to reach out and get some information on my own and find out more about treatment options. I had a great conversation with a lady from Ontario this morning who is super involved in the melanoma world and has many connections and lots of information about things like treatment. It was very informative and now I have even more to speak to my doctor about. I did find out that the treatment that I have received so far is not offered anywhere else in Canada in my situation. This may be a good thing or it may not. I would hope that I am getting the top of the line treatments offered to me. If there is something better, then of course I want it.
My last blog I talked about my difficulties in the hospital with my last surgery. I have since found out that I was ticked off with the anesthesia people when it was actually the surgical resident that was the problem. I wouldn't have really known who he was since he never did introduce himself. I had a lengthy conversation with the patient advocate representative from the hospital and had all of my concerns heard. Sounds like a case of an arrogant surgeon (go figure). I've decided to put this behind me and just be thankful that the surgery was successful. I'm sure this won't be the last time I run into a health care professional that "doesn't get it".
So I started typing this blog the other day and am picking off where I left off with the newest information that I received today. After getting tired of waiting for my oncologist to give me my pathology back I decided to make an appointment with my GP and get them from her which is what I did today. I am not always the most patient of patients. It seems that I was the only one not in the loop and not knowing what was going on. The news was good in that it did come back as metastatic melanoma with clear margins and no involvment of lymph nodes. In fact, they didn't mention anything about lymph nodes on the pathology report so I have no idea what my surgeon was seeing in there. So that is that! Unfortunately, there is no chemotherapy or radiation that they can offer me so that is the end of my treatment for now. I will be seeing him next week so then I can discuss a plan with him. The treatment options are changing frequently with melanoma as they are learning more and more about it and trying different ways to treat it all the time especially recently. Hopefully they will come up with something soon. I've heard of several new therapies which are in clinical trials right now. Right now I am feeling great! Very relieved and happy to be back to my No Evidence of Disease status!!
It's too bad that we just can't seem to stay away from the hospital though. My Mom fell the other day and broke her arm so she has been in the hospital ever since waiting to get in for surgery. We are really hoping and praying that they get her in today. She is on the waiting list right now so whenever one of them has time she will get in. They are controlling her pain well and she has a sweet nurse who is taking really good care of her. Nurses make all the difference in the world! Thank you to all of the wonderful, caring and compassionate nurses out there who do such an amazing job and don't get the recoginition they so deserve.
So, hopefully things calm down around here so that we can have a nice, peaceful Christmas. Hope everyone is enjoying the holidays so far and taking time to enjoy the small things.
It is definitely hard to wait for results ESPECIALLY WHEN YOU KNOW THAT THEY ARE SITTING IN YOUR CHART. It makes me feel that the system is failing me and that they are not as on top of things as I had hoped. I know that my pathology is going to come back as metastatic melanoma (apparently they could tell since it was black) but I have several questions about it like: how big? any lymph nodes affected? what now? I am very anxious to get in to see my doctor to have these and many more questions answered. I decided to reach out and get some information on my own and find out more about treatment options. I had a great conversation with a lady from Ontario this morning who is super involved in the melanoma world and has many connections and lots of information about things like treatment. It was very informative and now I have even more to speak to my doctor about. I did find out that the treatment that I have received so far is not offered anywhere else in Canada in my situation. This may be a good thing or it may not. I would hope that I am getting the top of the line treatments offered to me. If there is something better, then of course I want it.
My last blog I talked about my difficulties in the hospital with my last surgery. I have since found out that I was ticked off with the anesthesia people when it was actually the surgical resident that was the problem. I wouldn't have really known who he was since he never did introduce himself. I had a lengthy conversation with the patient advocate representative from the hospital and had all of my concerns heard. Sounds like a case of an arrogant surgeon (go figure). I've decided to put this behind me and just be thankful that the surgery was successful. I'm sure this won't be the last time I run into a health care professional that "doesn't get it".
So I started typing this blog the other day and am picking off where I left off with the newest information that I received today. After getting tired of waiting for my oncologist to give me my pathology back I decided to make an appointment with my GP and get them from her which is what I did today. I am not always the most patient of patients. It seems that I was the only one not in the loop and not knowing what was going on. The news was good in that it did come back as metastatic melanoma with clear margins and no involvment of lymph nodes. In fact, they didn't mention anything about lymph nodes on the pathology report so I have no idea what my surgeon was seeing in there. So that is that! Unfortunately, there is no chemotherapy or radiation that they can offer me so that is the end of my treatment for now. I will be seeing him next week so then I can discuss a plan with him. The treatment options are changing frequently with melanoma as they are learning more and more about it and trying different ways to treat it all the time especially recently. Hopefully they will come up with something soon. I've heard of several new therapies which are in clinical trials right now. Right now I am feeling great! Very relieved and happy to be back to my No Evidence of Disease status!!
It's too bad that we just can't seem to stay away from the hospital though. My Mom fell the other day and broke her arm so she has been in the hospital ever since waiting to get in for surgery. We are really hoping and praying that they get her in today. She is on the waiting list right now so whenever one of them has time she will get in. They are controlling her pain well and she has a sweet nurse who is taking really good care of her. Nurses make all the difference in the world! Thank you to all of the wonderful, caring and compassionate nurses out there who do such an amazing job and don't get the recoginition they so deserve.
So, hopefully things calm down around here so that we can have a nice, peaceful Christmas. Hope everyone is enjoying the holidays so far and taking time to enjoy the small things.
Thursday, November 17, 2011
The Stubborn Pirate
As most of you know, I went in for surgery last Tuesday after returning home from the Conference and now that I've had some time to let everything sink in I thought that I would write about it. I warn you in advance that this is a long one and you may need to get a cup of coffee/tea/hot chocolate before you sit down in front of the computer to read this. Get yourself comfy... Here goes..... I was admitted into the hospital at 11:00 Tuesday morning which was so nice - not too early. My surgery was scheduled for 1:00 so I had lots of time to get into my gown, get my IV put in and get ready for the OR. Jeff and my mom sat and visited with me during this time. Jeff had me cracking up like he usually does under a fairly stressful situation. This is how we deal with things like this. I talk about how fortunate I feel and how lucky I am to be able to be having surgery. And Jeff laughs saying "Oh yeah. You are just so lucky! If only everyone could be as lucky as you." It's all in the way you look at things. Really, I might not even be here right now so it does make me feel grateful and lucky to get any treatment that will save or extend my life. Before we knew it at around 1:00 they were ready for me.
This time things went a little differently. They had me walk down with Jeff and my mom where the hallway splits off - in one direction to the waiting room where Jeff and my mom have been many times before and in the other direction - the operating rooms. We parted there with hugs and Jeff whispered in my ear "Everything is going to be alright". It's always so hard to part ways at this point and not being in a wheelchair was so weird. "K, see you guys later! Bye!" as I walk away. So then I end up in another waiting room where I will wait for my turn to go into the OR.
I get situated comfortably at the end of a long row of recliners. After being offered warm blankets and a pillow I can relax as they ask me all of their questions. "Do you know why you're here? What procedure are you having done? Which side are we operating on?" My nurse was great. He was very friendly, compassionate and spoke to me like a person. I had two concerns which I discussed with him. The first was whether to have an epidural or not. I was not offered an epidural the last time I had this surgery because of their concerns with my brain metastasis/swelling at the time (last year). This time they were offering me an epidural and so I had some questions about it. What if it did cause problems for me? I didn't have an epidural last time and pain control was good. I had an amazing anesthesist last time and he made sure that I felt nothing and had good pain control post op. My nurse thought that my concerns were valid and that I should speak to the anesthesist about it and he strongly encouraged me to make up my own mind and advocate for myself. The second thing was having the arterial line placed after I had been put to sleep instead of before. I've had both and just let it be known that if I had a choice I would prefer it be put in after I was asleep. He agreed and didn't blame me at all for wanting this.
After speaking to the resident anesthesist about it she gave me three choices: have an epidural before surgery, wait and if needed get one after the surgery if my pain is not being controlled or not have one at all. After further discussion I chose option 2 - wait and if needed have an epidural after surgery if I can't handle the pain. Great! She thought that this was reasonable and we were all on the same page. My wonderful nurse also spoke out for me and I got my arterial line placed after I was asleep. Thank you to this amazing nurse for advocating for me and for listening to me. I saw another familiar face in the room - the nurse who had looked after me for the previous two surgeries. She actually remembered me and we had a quick little chat. It felt good to see someone familiar in there. After a quick discussion with my surgeon I am off and walking down the hallway to OR #5.
So I enter the room and hop up on the table while being introduced to a room full of people in gowns and masks. I'm being attached to multiple electrodes which I'm told will monitor me during the surgery. The mask is placed over my face and the anesthesist asks me what I would like to dream of. This is the first time seeing this guy (he didn't come to speak to me with the resident) so as I'm thinking about it he says puppies or kittens? Neither. I'm thinking more along the lines of maybe my kids or even Jon Bon Jovi. So we settle on a hot beach somewhere and before I know it I'm asleep.
I'm starting to wake up and I can hear people talking. The anesthesist is up by my head and he's talking about me - saying how stubborn I am. Really? Why is that? I can feel myself getting mad. Then he tells me to cough and as I do I feel a long tube being pulled from my throat. Now, I must admit that it probably is quite comical hearing someone coughing up a tube like this that has been in their throat for hours but he says to everyone "She sounds like a pirate! Argh! Argh!" After alot of laughter I fall back asleep. I wake up again lying in the recovery room. Pain is burning through my chest so much so that I can barely talk. The nurse asks where my pain is and I think I just tell her it hurts alot. I feel like I can't move, talk or breathe. Everything hurts. The anesthesist comes over and asks about my pain. I tell him it hurts alot. His response is "If you had let me give you an epidural you wouldn't be having this pain." OK, I'm thinking but we decided not to do the epidural so now what? I can't verbalize what I'm thinking because I'm in too much pain. I'm falling in and out of sleep but when I'm awake I am full of pain and can't do anything about it. The nurse finally comes with a pain pump and hooks me up and I start to feel better immediately. They wheel me down to the floor where I will be staying.
My family comes in after they get me settled. I'm in a room with three other people and it is super crowded. My family seems upset. Apparently, they have been waiting in the surgical waiting room for hours (during my surgery and the whole time I was in the recovery room) and no one let them know that I was even out of surgery. So they are starting to get worried and when my mom phones over to recovery they let her know that I've already been sent to the ward. They were starting to think that maybe something had gone wrong during the surgery; meanwhile, I was out of surgery early. Anyway, we are getting settled and I am basically in and out for the next several hours. My blood pressure is quite low and they are monitoring me closely putting me in the bed directly across from the nursing desk. Apparently they had trouble with my blood pressure the whole time keeping a close watch on it. My family all left to let my get some rest and my night nurse is the same nurse I had last time. Super nice woman and we would spend the next several hours through the night trying to get me to pee. Yes, pee. This is a big deal after surgery. Your bladder is filling itself up, overflowing, yet you can't feel it because you are numb from all the drugs. So you either have to pee eventually or they catheterize you. Now, if you had the choice. What would you choose? I wanted to pee on my own so badly but it just wouldn't happen - no matter what. After an ultrasound of my bladder showing that I had twice the amount of fluid in there than I shouldI had to give up and go for the catheter. Finally after this I could sleep in between waking up to give myself more morpine through the pain pump.
The next mornning were rounds and I can't exactly remember in which order I saw and spoke to everyone but seeing the anesthesist is clear in my mind. He is complaining about being woken up at 2 am to order a catheter for me. He's not happy about being disturbed. This doesn't even make sense to me. Why would he have to order this and wouldn't they anticipate this happening since I'm sure it's very common for people to have trouple peeing after a big surgery like this? Asks me about my pain. It's much better now but not perfect. He reminds me once again that if I had not refused an epidural I would have been better off. What? I am finally able to tell him that it wasn't just that I didn't want an epidural. I am so confused at this point. Does he just think that I am afraid of needles? Does he know everything that I have been through? He really does just think that I am being sucky and not wanting a needle in my back. Seriously?! He finally decides to ask me the question, "Why is it that you didn't want an epidural, then?" I tell him a bit about my history and how they had told me how dangerous it could be for someone with either brain metastasis or swelling to start playing around with the central nervous system. How it could cause major problems for me. I havn't had a brain MRI for three months. I don't know what's going on up there. I just didn't want to chance it especially since I had such good pain control during the previous surgery. I had no problems. He just looked at me with a blank look on his face and left. That was it. Did he not read my chart? He had no idea about my history? This is the one and only time I have run in to someone like this during the last two years of being in the health care system. He was not compassionate, didn't listen and didn't seem to care about anything but himself. All I can say is what a jerk and he will NEVER be coming near me again. My pain control was not handled properly and I feel like he wasn't concerned with making my pain manageable because he wanted me to be sorry that I didn't choose an epidural. That is not right! I shouldn't remember what went on when I was being extubated and I wouldn't if I had been drugged appropriately. My last surgery I don't remember what happened most of the first day because they wanted to make sure that I was kept comfortable. What a different experience this was. Glad I will never have to deal with this guy again!
I then have a woman (wasn't sure exactly who she was) come in and again talk to me about pain. By this point I had been using the pain pump and was doing fine with it. She was here to give me an epidural just in case I was having too much pain. No, I'm good. Thanks though. What's with the epidural push? When I was there having my baby I begged for an epidural and never did end up getting one and now they are pushing it on me. Anyway, I think that it was just ordered by the resident I had spoken too as we had planned just in case the pain pump wasn't working enough. So that was all good.
Another visitor that morning was my surgeon and his assistant. Of couse I ask how things went and am told that if you wake up in recovery and get sent down to the ward that means that things went well. OK. I was hoping for more specifics. Obviously, I'm happy that I woke up. That's always a good sign. So surgery went well. The surgeon then tells me that what he did remove from my lung was black and that there were also some dark lymph nodes there that he removed as well. I'm still not exactly sure what this means and we won't have any more information than this until the pathology comes back. I don't like the sounds of it. We thought that it was a little 6x8 mm nodule - that's it. So he then lets me know that I can leave. OK. I havn't been up out of bed yet, I havn't peed on my own yet, my pain is still not completely under control and I'm hooked up to a pain pump, it hasn't even been 24hours since my lung surgery and I can go? Really? Yep, no problem. I just have to have the tube hanging out of my chest removed and my IV out and off I go. Wow! Just like that. So I'm very cautiously optomistic that this is really possible. A few hours earlier I heard the woman in the next bed talking to the woman across from her. "Watch this young one next to us. She'll be in and out of here in no time". She sounded very perturbed by this and I can't blame her. She had been there for 3 weeks at the time dealing with complications from her surgery. Just so that people know though. Curtains are not sound proof. People can hear what you are saying on the other side of that curtain. Like Hello!!! It's fabric!
So I'm thinking that there is no way that I am ready to go home today. I would love to because it is not fun having three other room mates and listening to all the noises of the hospital. And come on hospital food really is disgusting! So I'm lying there thinking about all this and then someone comes in with some things for me to "bath myself" with. Special wipes because there has been an outbreak of VRE on the ward. What? Come on. The nurse explains that there is some kind of bug outbreak which at first I think he's talking about bed bugs and I freak out. No it's some kind of superbug that is resisent against antibiotics. Great! Now I really do want to get out of here. I get my first visitor of the day, Linda. I'm a little overwhelmed with everthing that has gone on this morning already. People coming in and out. I'm trying to bath myself with the wipes to make sure I don't get some kind of weird bug and my curtain keeps getting pulled open but the woman next to me. I just kept thinking "Please get me the hell out of here". A breathe of fresh air - Linda. We just start visiting and then x-ray is here to take me down for a chest x-ray and physio is here to take me for a walk. Linda is great and helps me manoever around all the mess in the hallway and get me to where I need to be. My x-ray turns out and then they are here to pull my tube out.
I'm up walking around so they disconnect the pain pump and give me some T#3's. Christine and my mom are here and shocked that they are talking about letting me go home. After hearing about the bug outbreak (there's signs up all over the ward) and hearing all the commotion going on we all decide that it's best if I go home. I do some laps in the hallway and have a pee on my own. Yayyy!!! I didn't get a smartie but I did hear myself say "Oh yeah!" and give a little fist pump. The T#3's seem to be managing the pain. Good enough. Let's go! I pack up all my stuff which I didn't even have time to unpack and get my IV out. After getting my discharge instructions I am so out of there. I had actually went into the hospital thinking that I would stay for at least a couple of days so to be on my way home by around 2:00 that afternoon was a surprise to say the least. The kids were so excited to see me after school! We had an awesome night together and boy was it ever so good to be home!!!
This last week I have been resting lots. My pain is getting less and less every day and I am starting to feel more like myself. I have gotten out of the house every day going for little walks or getting the kids to their appointments. I have been sleeping better and better every night and feel like things are going really well. It's a little over a weeks since surgery and I think that I am doing pretty well. Tomorrow, I go back to the surgeon and have my stitches and my staples removed. My insicion is alot longer this time than the last and my pain seems to be worse so I think that it will take me just a little bit longer this time to be back to my old self. Everyone has been wonderful helping get the kids to hockey, coming and making us meals and cleaning up. Thank you so much for this. It really means alot to us to have so much support.
Kaden comes into my room the other day and says, "So Mommy, you don't have cancer anymore right?" I was slow with my response and he continues, "You had surgery so now it's all gone?" "Yes, you are right." I finally respond. Half not believing what I am saying but not sure what else to say. Then I hear him go into the living room and announce to the boys and their friends that his mom doesn't have cancer anymore because she had surgery and they took it all out. God, I hope that he is right...
I am grateful for an amazing husband who makes me laugh when I need it the most and lets me cry when I can't laugh anymore. My kids amaze me everyday with the way they handle life and have grown up so much in the past couple of years. They are growing up into the little men that I always dreamed they would become. We have family right there helping us get through this and taking care of me. The love I feel is so overwhelming! I know that even those who don't live close keep us close to their hearts and this means so much to us. There are alot of people out there praying for us and cheering us on and this is what keeps our spirits up and keeps us strong. Thank you....
This time things went a little differently. They had me walk down with Jeff and my mom where the hallway splits off - in one direction to the waiting room where Jeff and my mom have been many times before and in the other direction - the operating rooms. We parted there with hugs and Jeff whispered in my ear "Everything is going to be alright". It's always so hard to part ways at this point and not being in a wheelchair was so weird. "K, see you guys later! Bye!" as I walk away. So then I end up in another waiting room where I will wait for my turn to go into the OR.
I get situated comfortably at the end of a long row of recliners. After being offered warm blankets and a pillow I can relax as they ask me all of their questions. "Do you know why you're here? What procedure are you having done? Which side are we operating on?" My nurse was great. He was very friendly, compassionate and spoke to me like a person. I had two concerns which I discussed with him. The first was whether to have an epidural or not. I was not offered an epidural the last time I had this surgery because of their concerns with my brain metastasis/swelling at the time (last year). This time they were offering me an epidural and so I had some questions about it. What if it did cause problems for me? I didn't have an epidural last time and pain control was good. I had an amazing anesthesist last time and he made sure that I felt nothing and had good pain control post op. My nurse thought that my concerns were valid and that I should speak to the anesthesist about it and he strongly encouraged me to make up my own mind and advocate for myself. The second thing was having the arterial line placed after I had been put to sleep instead of before. I've had both and just let it be known that if I had a choice I would prefer it be put in after I was asleep. He agreed and didn't blame me at all for wanting this.
After speaking to the resident anesthesist about it she gave me three choices: have an epidural before surgery, wait and if needed get one after the surgery if my pain is not being controlled or not have one at all. After further discussion I chose option 2 - wait and if needed have an epidural after surgery if I can't handle the pain. Great! She thought that this was reasonable and we were all on the same page. My wonderful nurse also spoke out for me and I got my arterial line placed after I was asleep. Thank you to this amazing nurse for advocating for me and for listening to me. I saw another familiar face in the room - the nurse who had looked after me for the previous two surgeries. She actually remembered me and we had a quick little chat. It felt good to see someone familiar in there. After a quick discussion with my surgeon I am off and walking down the hallway to OR #5.
So I enter the room and hop up on the table while being introduced to a room full of people in gowns and masks. I'm being attached to multiple electrodes which I'm told will monitor me during the surgery. The mask is placed over my face and the anesthesist asks me what I would like to dream of. This is the first time seeing this guy (he didn't come to speak to me with the resident) so as I'm thinking about it he says puppies or kittens? Neither. I'm thinking more along the lines of maybe my kids or even Jon Bon Jovi. So we settle on a hot beach somewhere and before I know it I'm asleep.
I'm starting to wake up and I can hear people talking. The anesthesist is up by my head and he's talking about me - saying how stubborn I am. Really? Why is that? I can feel myself getting mad. Then he tells me to cough and as I do I feel a long tube being pulled from my throat. Now, I must admit that it probably is quite comical hearing someone coughing up a tube like this that has been in their throat for hours but he says to everyone "She sounds like a pirate! Argh! Argh!" After alot of laughter I fall back asleep. I wake up again lying in the recovery room. Pain is burning through my chest so much so that I can barely talk. The nurse asks where my pain is and I think I just tell her it hurts alot. I feel like I can't move, talk or breathe. Everything hurts. The anesthesist comes over and asks about my pain. I tell him it hurts alot. His response is "If you had let me give you an epidural you wouldn't be having this pain." OK, I'm thinking but we decided not to do the epidural so now what? I can't verbalize what I'm thinking because I'm in too much pain. I'm falling in and out of sleep but when I'm awake I am full of pain and can't do anything about it. The nurse finally comes with a pain pump and hooks me up and I start to feel better immediately. They wheel me down to the floor where I will be staying.
My family comes in after they get me settled. I'm in a room with three other people and it is super crowded. My family seems upset. Apparently, they have been waiting in the surgical waiting room for hours (during my surgery and the whole time I was in the recovery room) and no one let them know that I was even out of surgery. So they are starting to get worried and when my mom phones over to recovery they let her know that I've already been sent to the ward. They were starting to think that maybe something had gone wrong during the surgery; meanwhile, I was out of surgery early. Anyway, we are getting settled and I am basically in and out for the next several hours. My blood pressure is quite low and they are monitoring me closely putting me in the bed directly across from the nursing desk. Apparently they had trouble with my blood pressure the whole time keeping a close watch on it. My family all left to let my get some rest and my night nurse is the same nurse I had last time. Super nice woman and we would spend the next several hours through the night trying to get me to pee. Yes, pee. This is a big deal after surgery. Your bladder is filling itself up, overflowing, yet you can't feel it because you are numb from all the drugs. So you either have to pee eventually or they catheterize you. Now, if you had the choice. What would you choose? I wanted to pee on my own so badly but it just wouldn't happen - no matter what. After an ultrasound of my bladder showing that I had twice the amount of fluid in there than I shouldI had to give up and go for the catheter. Finally after this I could sleep in between waking up to give myself more morpine through the pain pump.
The next mornning were rounds and I can't exactly remember in which order I saw and spoke to everyone but seeing the anesthesist is clear in my mind. He is complaining about being woken up at 2 am to order a catheter for me. He's not happy about being disturbed. This doesn't even make sense to me. Why would he have to order this and wouldn't they anticipate this happening since I'm sure it's very common for people to have trouple peeing after a big surgery like this? Asks me about my pain. It's much better now but not perfect. He reminds me once again that if I had not refused an epidural I would have been better off. What? I am finally able to tell him that it wasn't just that I didn't want an epidural. I am so confused at this point. Does he just think that I am afraid of needles? Does he know everything that I have been through? He really does just think that I am being sucky and not wanting a needle in my back. Seriously?! He finally decides to ask me the question, "Why is it that you didn't want an epidural, then?" I tell him a bit about my history and how they had told me how dangerous it could be for someone with either brain metastasis or swelling to start playing around with the central nervous system. How it could cause major problems for me. I havn't had a brain MRI for three months. I don't know what's going on up there. I just didn't want to chance it especially since I had such good pain control during the previous surgery. I had no problems. He just looked at me with a blank look on his face and left. That was it. Did he not read my chart? He had no idea about my history? This is the one and only time I have run in to someone like this during the last two years of being in the health care system. He was not compassionate, didn't listen and didn't seem to care about anything but himself. All I can say is what a jerk and he will NEVER be coming near me again. My pain control was not handled properly and I feel like he wasn't concerned with making my pain manageable because he wanted me to be sorry that I didn't choose an epidural. That is not right! I shouldn't remember what went on when I was being extubated and I wouldn't if I had been drugged appropriately. My last surgery I don't remember what happened most of the first day because they wanted to make sure that I was kept comfortable. What a different experience this was. Glad I will never have to deal with this guy again!
I then have a woman (wasn't sure exactly who she was) come in and again talk to me about pain. By this point I had been using the pain pump and was doing fine with it. She was here to give me an epidural just in case I was having too much pain. No, I'm good. Thanks though. What's with the epidural push? When I was there having my baby I begged for an epidural and never did end up getting one and now they are pushing it on me. Anyway, I think that it was just ordered by the resident I had spoken too as we had planned just in case the pain pump wasn't working enough. So that was all good.
Another visitor that morning was my surgeon and his assistant. Of couse I ask how things went and am told that if you wake up in recovery and get sent down to the ward that means that things went well. OK. I was hoping for more specifics. Obviously, I'm happy that I woke up. That's always a good sign. So surgery went well. The surgeon then tells me that what he did remove from my lung was black and that there were also some dark lymph nodes there that he removed as well. I'm still not exactly sure what this means and we won't have any more information than this until the pathology comes back. I don't like the sounds of it. We thought that it was a little 6x8 mm nodule - that's it. So he then lets me know that I can leave. OK. I havn't been up out of bed yet, I havn't peed on my own yet, my pain is still not completely under control and I'm hooked up to a pain pump, it hasn't even been 24hours since my lung surgery and I can go? Really? Yep, no problem. I just have to have the tube hanging out of my chest removed and my IV out and off I go. Wow! Just like that. So I'm very cautiously optomistic that this is really possible. A few hours earlier I heard the woman in the next bed talking to the woman across from her. "Watch this young one next to us. She'll be in and out of here in no time". She sounded very perturbed by this and I can't blame her. She had been there for 3 weeks at the time dealing with complications from her surgery. Just so that people know though. Curtains are not sound proof. People can hear what you are saying on the other side of that curtain. Like Hello!!! It's fabric!
So I'm thinking that there is no way that I am ready to go home today. I would love to because it is not fun having three other room mates and listening to all the noises of the hospital. And come on hospital food really is disgusting! So I'm lying there thinking about all this and then someone comes in with some things for me to "bath myself" with. Special wipes because there has been an outbreak of VRE on the ward. What? Come on. The nurse explains that there is some kind of bug outbreak which at first I think he's talking about bed bugs and I freak out. No it's some kind of superbug that is resisent against antibiotics. Great! Now I really do want to get out of here. I get my first visitor of the day, Linda. I'm a little overwhelmed with everthing that has gone on this morning already. People coming in and out. I'm trying to bath myself with the wipes to make sure I don't get some kind of weird bug and my curtain keeps getting pulled open but the woman next to me. I just kept thinking "Please get me the hell out of here". A breathe of fresh air - Linda. We just start visiting and then x-ray is here to take me down for a chest x-ray and physio is here to take me for a walk. Linda is great and helps me manoever around all the mess in the hallway and get me to where I need to be. My x-ray turns out and then they are here to pull my tube out.
I'm up walking around so they disconnect the pain pump and give me some T#3's. Christine and my mom are here and shocked that they are talking about letting me go home. After hearing about the bug outbreak (there's signs up all over the ward) and hearing all the commotion going on we all decide that it's best if I go home. I do some laps in the hallway and have a pee on my own. Yayyy!!! I didn't get a smartie but I did hear myself say "Oh yeah!" and give a little fist pump. The T#3's seem to be managing the pain. Good enough. Let's go! I pack up all my stuff which I didn't even have time to unpack and get my IV out. After getting my discharge instructions I am so out of there. I had actually went into the hospital thinking that I would stay for at least a couple of days so to be on my way home by around 2:00 that afternoon was a surprise to say the least. The kids were so excited to see me after school! We had an awesome night together and boy was it ever so good to be home!!!
This last week I have been resting lots. My pain is getting less and less every day and I am starting to feel more like myself. I have gotten out of the house every day going for little walks or getting the kids to their appointments. I have been sleeping better and better every night and feel like things are going really well. It's a little over a weeks since surgery and I think that I am doing pretty well. Tomorrow, I go back to the surgeon and have my stitches and my staples removed. My insicion is alot longer this time than the last and my pain seems to be worse so I think that it will take me just a little bit longer this time to be back to my old self. Everyone has been wonderful helping get the kids to hockey, coming and making us meals and cleaning up. Thank you so much for this. It really means alot to us to have so much support.
Kaden comes into my room the other day and says, "So Mommy, you don't have cancer anymore right?" I was slow with my response and he continues, "You had surgery so now it's all gone?" "Yes, you are right." I finally respond. Half not believing what I am saying but not sure what else to say. Then I hear him go into the living room and announce to the boys and their friends that his mom doesn't have cancer anymore because she had surgery and they took it all out. God, I hope that he is right...
I am grateful for an amazing husband who makes me laugh when I need it the most and lets me cry when I can't laugh anymore. My kids amaze me everyday with the way they handle life and have grown up so much in the past couple of years. They are growing up into the little men that I always dreamed they would become. We have family right there helping us get through this and taking care of me. The love I feel is so overwhelming! I know that even those who don't live close keep us close to their hearts and this means so much to us. There are alot of people out there praying for us and cheering us on and this is what keeps our spirits up and keeps us strong. Thank you....
Wednesday, November 16, 2011
Saturday, November 12, 2011
Ottawa Conference 2011
So the last couple of weeks have really flown by. We celebrated Kaden's 7th birthday with a day full of fun. He had a birthday party with lots of his friends all dressed up in costumes, playing games and eating lots of treats. He had a great time. Then we had the family over for supper and cake. It was a very full and very fun day!! I also finished up work and have been off for the past two weeks. I did feel very sad closing my office door at the end of the day and saying goodbye to everyone there. Everyone has been so great with my return to work I felt like it was way too soon for me to be leaving again.
I was so happy to have the conference to look forward to so that I wasn't dwelling on the rest. We had an absolutely amazing time in Ottawa! My sisters and I were all able to attend the Young Adult Cancer Canada conference this time - Christine as a facilitator, Me as a Survivor and Laura as my Supporter. This was Laura's first experience with YACC and it was a very special one for sure. Laura and I spent our first day walking around Ottawa in the rain (with umbrellas of course) and it was absolutely beautiful. We stopped in at the Art Gallery and spent a few hours in this calm, peaceful place taking it all in. Besides getting to spend this time with my sisters, I so needed to reconnect with some of my cancer buddies. It's such a different world with us in a room together. Nothing like cutting right to the chase. People are so open and ready to share that there is no small talk. What kind of cancer do you have? What has your treatment been like and by the end of the conversation you are talking about relationships, fears, futures, bowel habits... It is pretty amazing how open cancer makes people. I love getting to know people at this level. It is so real.
I took away alot from this conference: a feeling of community, hope, strength, faith, knowledge and motivation. I was again reminded that 1% is not 0%. Anything is possible and no one knows what the future holds. I also realized how much guilt and blame that I was carrying with my cancer diagnosis. Apparently, there is nothing that I could have done in my short 36 years on this earth that could have caused myself to get cancer. The first time I heard this I said it over and over again in my head and thought that for sure he must be wrong but then when I really thought about it I realized that maybe it was true. I didn't even realize that I blamed myself for this happening. The questions that I get asked from my health care providers like; Do you spend alot of time in the sun? Have you used a tanning bed? Do you wear sunscreen? Then when my cancer spread to my lungs the question always asked; Do you smoke or have you ever smoked? All of these questions made a huge impact on me and implied to me that they thought that there was obviously something that I had done to cause this disease to pick on me. The realization that there really was nothing horrible that I had done to cause this to happen felt like a huge burden lifted from me. It is NOT my fault. Wow! I am also very motivated once again to help make my quality of life the best that it can be by taking great care of myself and my body.
The highlights for me from the conference were hearing Geoff's story. It was so inspiring but also full of humour and lots of lessons to be learned. Our speakers were full of knowledge about brain fog, exercise and yoga. I spent some time with some really amazing people who taught me so much about living life and inspired me to live and be well. Reconnecting with people I either have never met before or hadn't seen in a year or more was awesome! Hearing the stories and how people cope with their cancer and find healing. (Even if the healing does not always come physically) Hearing that my cancer had returned again this time was heartbreaking. I have found it very difficult to wrap my head around. And hearing out loud that my cancer will most likely keep coming back again and again was not easy. I realized being away at this conference that this was all so hard to hear that I wasn't really feeling it. I had become numb, not able to feel what all of this meant to me. The problem with this is that you can not feel any of the wonderful, amazing feelings either. Being at this conference really awakened all of my feeling (both good and bad) and let me finally let go of some of the crap. I feel so much more whole now and alive.
I missed Jeff and the kids like crazy while I was gone but I really think that it did me a lot of good to give myself this time away. As the weekend came to a close I couldn't help but start thinking about surgery coming up and starting to dread this but I focused more on getting back home and seeing Jeff and the boys. They are what keep me going and motivate me to live my best. I would do anything for my family. I love them so much.. I just wish that I could make all this cancer crap disappear and all of the pain and sadness that comes along with it.
Thank you YACC family for an amazing conference full of everything that I needed - energy, laughter, motivation, understanding, love and hope....
I was so happy to have the conference to look forward to so that I wasn't dwelling on the rest. We had an absolutely amazing time in Ottawa! My sisters and I were all able to attend the Young Adult Cancer Canada conference this time - Christine as a facilitator, Me as a Survivor and Laura as my Supporter. This was Laura's first experience with YACC and it was a very special one for sure. Laura and I spent our first day walking around Ottawa in the rain (with umbrellas of course) and it was absolutely beautiful. We stopped in at the Art Gallery and spent a few hours in this calm, peaceful place taking it all in. Besides getting to spend this time with my sisters, I so needed to reconnect with some of my cancer buddies. It's such a different world with us in a room together. Nothing like cutting right to the chase. People are so open and ready to share that there is no small talk. What kind of cancer do you have? What has your treatment been like and by the end of the conversation you are talking about relationships, fears, futures, bowel habits... It is pretty amazing how open cancer makes people. I love getting to know people at this level. It is so real.
I took away alot from this conference: a feeling of community, hope, strength, faith, knowledge and motivation. I was again reminded that 1% is not 0%. Anything is possible and no one knows what the future holds. I also realized how much guilt and blame that I was carrying with my cancer diagnosis. Apparently, there is nothing that I could have done in my short 36 years on this earth that could have caused myself to get cancer. The first time I heard this I said it over and over again in my head and thought that for sure he must be wrong but then when I really thought about it I realized that maybe it was true. I didn't even realize that I blamed myself for this happening. The questions that I get asked from my health care providers like; Do you spend alot of time in the sun? Have you used a tanning bed? Do you wear sunscreen? Then when my cancer spread to my lungs the question always asked; Do you smoke or have you ever smoked? All of these questions made a huge impact on me and implied to me that they thought that there was obviously something that I had done to cause this disease to pick on me. The realization that there really was nothing horrible that I had done to cause this to happen felt like a huge burden lifted from me. It is NOT my fault. Wow! I am also very motivated once again to help make my quality of life the best that it can be by taking great care of myself and my body.
The highlights for me from the conference were hearing Geoff's story. It was so inspiring but also full of humour and lots of lessons to be learned. Our speakers were full of knowledge about brain fog, exercise and yoga. I spent some time with some really amazing people who taught me so much about living life and inspired me to live and be well. Reconnecting with people I either have never met before or hadn't seen in a year or more was awesome! Hearing the stories and how people cope with their cancer and find healing. (Even if the healing does not always come physically) Hearing that my cancer had returned again this time was heartbreaking. I have found it very difficult to wrap my head around. And hearing out loud that my cancer will most likely keep coming back again and again was not easy. I realized being away at this conference that this was all so hard to hear that I wasn't really feeling it. I had become numb, not able to feel what all of this meant to me. The problem with this is that you can not feel any of the wonderful, amazing feelings either. Being at this conference really awakened all of my feeling (both good and bad) and let me finally let go of some of the crap. I feel so much more whole now and alive.
I missed Jeff and the kids like crazy while I was gone but I really think that it did me a lot of good to give myself this time away. As the weekend came to a close I couldn't help but start thinking about surgery coming up and starting to dread this but I focused more on getting back home and seeing Jeff and the boys. They are what keep me going and motivate me to live my best. I would do anything for my family. I love them so much.. I just wish that I could make all this cancer crap disappear and all of the pain and sadness that comes along with it.
Thank you YACC family for an amazing conference full of everything that I needed - energy, laughter, motivation, understanding, love and hope....
Tuesday, October 4, 2011
Tough times don't last... tough people do. -Earl Cook
So, alot has happened in the past few weeks and I have to admit it has been extremely difficult for my entire family. We said goodbye to my cousin Earl on September 18 (Jeff's birthday) and this has been very hard on everyone. As most of you know Earl has been fighting hard against his cancer for the past several years. He never gave up - ever! He always smiled and lived his life the way that he wanted, never missing an opportunity to have fun. Just a month before, we spent the day at Quarry Days watching the kids on the rides and eating mini-doughnuts, sipping lemonade even though I know he was exhausted and not feeling great. I will never again be able to watch Trailor Park Boys and not think of Earl's goofy laugh! He had such a big heart always thinking of others. At an appointment for his CT not long ago, as the woman across from us was choking down the contrast she had to drink two glasses of, Earl says to me "Natalie, I want to give her some of my iced tea powder". Earl brings some Crystal light or iced tea mix to stir into the contrast so that it doesn't taste so terrible. After I said sure, he offered it to her. She declined smiling but I thought it was so sweet that he didn't like seeing someone else uncomfortable and wanted to help make it easier for her. It's hard to believe that we will never see him again. The boys are very angry and sad but they can all picture Earl up in heaven playing in goal for his team. The question was asked,"Where was Earl's God the night he died." My answer to this to the boys was "Right there with Earl in his arms releasing him from his pain and suffering." And I truly do believe this. The service for Earl was held at the MTS centre and was exactly what Earl would have wanted - a service about the two things that Earl loved most in this world - God and hockey. It was very spiritual and beautiful. We will all miss him so much. Like Earl used to say all the time "Tough times don't last...tough people do." He was definitely tough. We love you Earl!
Unfortunately, Earl was supposed to receive the Ace Bailey Award of Courage a week later. He was so looking forward to this evening even making sure that his surgery and any chemotherapy treatments would be arranged around this special night. His mom (Debbie) accepted his award on his behalf in Toronto and I'm sure that he was looking down and loving every minute of it.
While all this was happening we were still waiting for me to get in for the PET scan which showed that there was only one "hot spot" in my right middle lobe. Good news!! We waited anxiously for the next week until I got in to see the Thoracic surgeon to see if he thought that this was operable. I saw him yesterday and found out that -Yes- he will do the surgery the beginning of November. Since this is most likely another melanoma tumour we don't want to wait to watch and see if it spreads. I made sure that he knew how much I wanted this thing gone ASAP. The PET scan showed that it seems to be growing very slowly so another 4 weeks should not affect things too much. So now it's time to get my body strong for another surgery so that I can bounce back as quickly as last time. I am still working finishing up my back to work program and start full time next week. I will work until just before my surgery date and then will be off again for somewhere between 6-8 weeks for recovery. My boss is being really great about this and hopefully I won't run into any problems along the way.
It's hard to believe that "It's back" and I am having to deal with this again already. They talk about this being my fourth recurrence which makes absolutely no sense to me. The lesion on my temple would be the first occurrence, then the brain and lung happened at the same time so that would be REcurrence #1 and now the lung again would be REcurrence #2. By my books this would only be my 2nd recurrence but whatever....
I know that this is not the ideal situation. Of course it's not good when you're cancer reuccurs any number of times but I still feel well and am willing to do whatever it takes to get back to my previous NED (no evidence of disease) status.
I am much more accepting of my living with cancer and now realize that it will be with me now on and off (hopefully mostly off) for the rest of my life. I am trying to find a more balanced approach to dealing with this instead of living on this up and down rollar coaster which I am quite frankly tired of riding. I was listening to my Jann Arden CD on the way to work the other day and her cover song Peace Train came on. Then it hit me - I just need to hop on to the Peace Train. "I've been happy lately, thinking about the good things to come. Up on the edge of darkness, there rides a peace train. Peace train sounding louder, ride on the peace train. Come on the peace train. It's not so far from you and it's getting nearer. Soon it will all be true! Everyone up on the peace train!" I can guarantee you that as soon as that peace train comes anywhere near me again I am hitching a ride!!
So how does a person get ready for a doctor's appointment with a surgeon who will decide ultimately if he will do surgery or not? As I was getting ready Monday morning for my appointment I thought alot about this. I was preparing myself mentally for either decision that he would make. I rehearsed my side of things and reasons why I wanted this surgery several times in my head just in case I had to debate my side of things. Also, getting ready I thought about how I needed to look - not too healthy but not too sick either. What if he looked at me and thought "She doesn't look strong enough to go through another surgery." or "She's looks pretty good. She'll be fine for a while. This isn't a big rush." I actually laughed out loud at myself in the mirror thinking that I was losing my mind. Who thinks about how healthy or how sick they should look for a doctor's appointment??
So, here we are getting ready for another surgery and remaining hopeful that this will be the last one that I will need because the cancer does not come back. The weekend before surgery I will be attending the Young Adult Cancer Canada conference and am amazed that it has once again worked out perfectly and I will get the chance to reconnect with my friends before coming back for surgery. Some things just fall into place and work out the way that they are meant to and this is one of them.
Thank you to all of you for keeping me and my family in your thoughts and prayers. It means alot to us. And so Earl and I go our seperate ways on this journey but both of us I know will find our own peace....
Love you buddy xoxoxo
Unfortunately, Earl was supposed to receive the Ace Bailey Award of Courage a week later. He was so looking forward to this evening even making sure that his surgery and any chemotherapy treatments would be arranged around this special night. His mom (Debbie) accepted his award on his behalf in Toronto and I'm sure that he was looking down and loving every minute of it.
While all this was happening we were still waiting for me to get in for the PET scan which showed that there was only one "hot spot" in my right middle lobe. Good news!! We waited anxiously for the next week until I got in to see the Thoracic surgeon to see if he thought that this was operable. I saw him yesterday and found out that -Yes- he will do the surgery the beginning of November. Since this is most likely another melanoma tumour we don't want to wait to watch and see if it spreads. I made sure that he knew how much I wanted this thing gone ASAP. The PET scan showed that it seems to be growing very slowly so another 4 weeks should not affect things too much. So now it's time to get my body strong for another surgery so that I can bounce back as quickly as last time. I am still working finishing up my back to work program and start full time next week. I will work until just before my surgery date and then will be off again for somewhere between 6-8 weeks for recovery. My boss is being really great about this and hopefully I won't run into any problems along the way.
It's hard to believe that "It's back" and I am having to deal with this again already. They talk about this being my fourth recurrence which makes absolutely no sense to me. The lesion on my temple would be the first occurrence, then the brain and lung happened at the same time so that would be REcurrence #1 and now the lung again would be REcurrence #2. By my books this would only be my 2nd recurrence but whatever....
I know that this is not the ideal situation. Of course it's not good when you're cancer reuccurs any number of times but I still feel well and am willing to do whatever it takes to get back to my previous NED (no evidence of disease) status.
I am much more accepting of my living with cancer and now realize that it will be with me now on and off (hopefully mostly off) for the rest of my life. I am trying to find a more balanced approach to dealing with this instead of living on this up and down rollar coaster which I am quite frankly tired of riding. I was listening to my Jann Arden CD on the way to work the other day and her cover song Peace Train came on. Then it hit me - I just need to hop on to the Peace Train. "I've been happy lately, thinking about the good things to come. Up on the edge of darkness, there rides a peace train. Peace train sounding louder, ride on the peace train. Come on the peace train. It's not so far from you and it's getting nearer. Soon it will all be true! Everyone up on the peace train!" I can guarantee you that as soon as that peace train comes anywhere near me again I am hitching a ride!!
So how does a person get ready for a doctor's appointment with a surgeon who will decide ultimately if he will do surgery or not? As I was getting ready Monday morning for my appointment I thought alot about this. I was preparing myself mentally for either decision that he would make. I rehearsed my side of things and reasons why I wanted this surgery several times in my head just in case I had to debate my side of things. Also, getting ready I thought about how I needed to look - not too healthy but not too sick either. What if he looked at me and thought "She doesn't look strong enough to go through another surgery." or "She's looks pretty good. She'll be fine for a while. This isn't a big rush." I actually laughed out loud at myself in the mirror thinking that I was losing my mind. Who thinks about how healthy or how sick they should look for a doctor's appointment??
So, here we are getting ready for another surgery and remaining hopeful that this will be the last one that I will need because the cancer does not come back. The weekend before surgery I will be attending the Young Adult Cancer Canada conference and am amazed that it has once again worked out perfectly and I will get the chance to reconnect with my friends before coming back for surgery. Some things just fall into place and work out the way that they are meant to and this is one of them.
Thank you to all of you for keeping me and my family in your thoughts and prayers. It means alot to us. And so Earl and I go our seperate ways on this journey but both of us I know will find our own peace....
Love you buddy xoxoxo
Friday, September 9, 2011
Stupid Cancer
How quickly things can change....
Last weekend Jeff & I took the boys to Minniapolis and had a really great time. We celebrated my birthday by going out for a nice dinner and the following day going to the waterpark. I started back to work the following day and had an awesome first day back. Got re-accquianted with everyone and got settled into my new office. I must say that on the drive there I felt so full of gratitude. I was so happy to be able to finally get back to work and be somewhat normal again. And the fact that I was returning to work meant that I was well and heatlhy again, right?? Alot of people dread going to work and I just felt like it was the best thing that could be happening. I must say that being back there was a little weird in a way because alot of things reminded me of when I was sick. I found a paper where I was keeping track of all my headaches and how I was feeling on a daily basis; trying to figure out what the headaches were from and how much Tylenol I was taking. Sort of brought everything that had happened back. Everyone there was so friendly and happy to see me back and well again.
Wednesday morning was my scheduled appointment with my Oncologist where I would be getting back all of my test results from the previous scans. I really am feeling great and wasn't expecting anything out of the ordinary. The resident came in and let us know that something was found on my chest scan - a tumour in the right middle lobe of my lung. It's a bit larger than the one I had removed last year and that one was in my right lower lobe. It is still quite small, 6 x 8 mm, but we need to jump on it ASAP. I am being sent for a PET scan in two weeks to see if there are any more hot spots which would mean that there is more than one tumour there. We are really hoping and praying that this is the only one and that they will be able to operate to remove it. If it is inoperable then I will be offered chemotherapy. I have to say that having a few really good friends in the waiting room was really nice. A few people that I have met through the Melanoma Support Group were waiting for their appointments so I got lots of hugs and comfort from them. It was really nice for both me and my mom.
So, we go from being excited and happy to being disappointed and worried over night. I am focusing right now on how I feel. I feel great! No chest pain, no shortness of breathe, no cough. I don't really understand how this can be and am anxious to find out more about what is going to happen. The really great news was that my brain MRI was stable - nothing new there popping up. This was a full body scan and this was the only spot that was found so I am grateful for that.
I do feel angry and disappointed that all of my planning and preparation has blown up in my face but I am still trying to figure out how to at least finish my back to work program before I have treatment. I feel a little betrayed by my body leading me to believe that I am gaining my health back and then snatching it back from me. Really though what can I do? We are all obviously very upset with this latest news but remain very hopeful that this will be easily treated. I remind myself that the tumour in my brain was much larger than this one and I got through that so this should be a walk in the park compared to that. Plus I've already had a chest surgery and it went very well.
I have registered and am so looking forward to attending another YACC conference which is in Ottawa in November. Hopefully things will fall into place and allow me to attend. Every event that I have been to through YACC has been amazing and very life changing. I honestly don't know what I would do without being a part of this and being able to connect with such wonderful people. If you or someone you know is a young adult (age 18 - 35ish) and dealing with a cancer dianosis this is an organization that you or they will want to connect with. Check out the website at www.youngadultcancer.ca and register for the conference. There is also a group of young adults which gets together at CancerCare in Winnipeg every month and they have been a huge support. I love going and catching up with everyone. They totally get it!
So, for the next two weeks I will just keep going and enjoying life while waiting to see what will happen. I actually scheduled a manicure/pedicure at the spa next week to finally use the gift certificate that's been sitting on my dresser for months and months.
Be well and live life to its fullest!!
Last weekend Jeff & I took the boys to Minniapolis and had a really great time. We celebrated my birthday by going out for a nice dinner and the following day going to the waterpark. I started back to work the following day and had an awesome first day back. Got re-accquianted with everyone and got settled into my new office. I must say that on the drive there I felt so full of gratitude. I was so happy to be able to finally get back to work and be somewhat normal again. And the fact that I was returning to work meant that I was well and heatlhy again, right?? Alot of people dread going to work and I just felt like it was the best thing that could be happening. I must say that being back there was a little weird in a way because alot of things reminded me of when I was sick. I found a paper where I was keeping track of all my headaches and how I was feeling on a daily basis; trying to figure out what the headaches were from and how much Tylenol I was taking. Sort of brought everything that had happened back. Everyone there was so friendly and happy to see me back and well again.
Wednesday morning was my scheduled appointment with my Oncologist where I would be getting back all of my test results from the previous scans. I really am feeling great and wasn't expecting anything out of the ordinary. The resident came in and let us know that something was found on my chest scan - a tumour in the right middle lobe of my lung. It's a bit larger than the one I had removed last year and that one was in my right lower lobe. It is still quite small, 6 x 8 mm, but we need to jump on it ASAP. I am being sent for a PET scan in two weeks to see if there are any more hot spots which would mean that there is more than one tumour there. We are really hoping and praying that this is the only one and that they will be able to operate to remove it. If it is inoperable then I will be offered chemotherapy. I have to say that having a few really good friends in the waiting room was really nice. A few people that I have met through the Melanoma Support Group were waiting for their appointments so I got lots of hugs and comfort from them. It was really nice for both me and my mom.
So, we go from being excited and happy to being disappointed and worried over night. I am focusing right now on how I feel. I feel great! No chest pain, no shortness of breathe, no cough. I don't really understand how this can be and am anxious to find out more about what is going to happen. The really great news was that my brain MRI was stable - nothing new there popping up. This was a full body scan and this was the only spot that was found so I am grateful for that.
I do feel angry and disappointed that all of my planning and preparation has blown up in my face but I am still trying to figure out how to at least finish my back to work program before I have treatment. I feel a little betrayed by my body leading me to believe that I am gaining my health back and then snatching it back from me. Really though what can I do? We are all obviously very upset with this latest news but remain very hopeful that this will be easily treated. I remind myself that the tumour in my brain was much larger than this one and I got through that so this should be a walk in the park compared to that. Plus I've already had a chest surgery and it went very well.
I have registered and am so looking forward to attending another YACC conference which is in Ottawa in November. Hopefully things will fall into place and allow me to attend. Every event that I have been to through YACC has been amazing and very life changing. I honestly don't know what I would do without being a part of this and being able to connect with such wonderful people. If you or someone you know is a young adult (age 18 - 35ish) and dealing with a cancer dianosis this is an organization that you or they will want to connect with. Check out the website at www.youngadultcancer.ca and register for the conference. There is also a group of young adults which gets together at CancerCare in Winnipeg every month and they have been a huge support. I love going and catching up with everyone. They totally get it!
So, for the next two weeks I will just keep going and enjoying life while waiting to see what will happen. I actually scheduled a manicure/pedicure at the spa next week to finally use the gift certificate that's been sitting on my dresser for months and months.
Be well and live life to its fullest!!
Monday, August 29, 2011
Heigh ho...heigh ho....it's off to work I go........
I can't believe how quickly August is flying by.....
We have been having lots of fun with all the company we have been getting. It's hard to imagaine that next week the kids will be back in school and I will be back to work. I had my meeting last month with my boss and my CPP coordinator to plan out my back to work and it went very well. I will return on a gradual return to work program that will go for 5 weeks so I am not returning full time right off the bat. I am both very excited to get back into the swing of things and also very nervous about how things will go. I have been feeling great the past several weeks and hope that my returning to work does not change this. I am looking forward to seeing everyone there again and hope that I can just jump back into things and be normal for a while.
I went for my planned brain MRI last week and so am a little nervous as I wait for these results to come back. I go for a CT scan tomorrow where they are scanning my abdomen, pelvis, chest and neck and then I see my oncologist the following week when I will get all of these results back. I have to admit that I am really nervous about this and hopefully will be super relieved after this appointment. I feel a little bit like "Could life really get back to some sort of normal after all this or is that just wishful thinking?"
I wound up with a stitch abscess in my arm from the wide excision I had done several weeks ago. I guess my body rejected these stitches that eventually are supposed to dissolve on their own. My incision opened up and the stitches started coming out but things are finally starting to heal again and now it looks like it will heal up nicely.
While planning my return to work I have also been getting the kids ready to get back to school. What a job that is!! Glad the boys are getting old enough to help label all their stuff!! It will actually be so nice to get into a regular routine and see how that feels. We are all so looking forward to this.
We have really enjoyed these past few weeks visiting with friends and family. We had a great time at Quarry Days. The supper to welcome home the troops this past weekend was so much fun! We danced and sang and laughed all night!! Jeff and I had an absolute blast!! I havn't danced like that for such a long time! It felt really good!
So although there is still alot of uncertainty, right now it feels good to be able to make plans for the future (something we havn't been able to do for the past year and a half) and look forward to seeing how life will be. It is sometimes not easy living with so much uncertainty and fear of what will happen but we have to focus on everything good in our lives.
We have been having lots of fun with all the company we have been getting. It's hard to imagaine that next week the kids will be back in school and I will be back to work. I had my meeting last month with my boss and my CPP coordinator to plan out my back to work and it went very well. I will return on a gradual return to work program that will go for 5 weeks so I am not returning full time right off the bat. I am both very excited to get back into the swing of things and also very nervous about how things will go. I have been feeling great the past several weeks and hope that my returning to work does not change this. I am looking forward to seeing everyone there again and hope that I can just jump back into things and be normal for a while.
I went for my planned brain MRI last week and so am a little nervous as I wait for these results to come back. I go for a CT scan tomorrow where they are scanning my abdomen, pelvis, chest and neck and then I see my oncologist the following week when I will get all of these results back. I have to admit that I am really nervous about this and hopefully will be super relieved after this appointment. I feel a little bit like "Could life really get back to some sort of normal after all this or is that just wishful thinking?"
I wound up with a stitch abscess in my arm from the wide excision I had done several weeks ago. I guess my body rejected these stitches that eventually are supposed to dissolve on their own. My incision opened up and the stitches started coming out but things are finally starting to heal again and now it looks like it will heal up nicely.
While planning my return to work I have also been getting the kids ready to get back to school. What a job that is!! Glad the boys are getting old enough to help label all their stuff!! It will actually be so nice to get into a regular routine and see how that feels. We are all so looking forward to this.
We have really enjoyed these past few weeks visiting with friends and family. We had a great time at Quarry Days. The supper to welcome home the troops this past weekend was so much fun! We danced and sang and laughed all night!! Jeff and I had an absolute blast!! I havn't danced like that for such a long time! It felt really good!
So although there is still alot of uncertainty, right now it feels good to be able to make plans for the future (something we havn't been able to do for the past year and a half) and look forward to seeing how life will be. It is sometimes not easy living with so much uncertainty and fear of what will happen but we have to focus on everything good in our lives.
Wednesday, August 3, 2011
Weekend of Fun!!!
So, we're back from our weekend of fun in Kenora and it was awesome! We all had a really great time. It was a nice balance of fun and relaxation. We took the famous hike up blueberry hill and it was so neat to watch the kids picking blueberries and having fun with their cousins. It so reminded me of when I was little, and what a beautiful view when you get up there. We also had an outdoor movie night every night that we were there. Popcorn and everything. The kids loved it! We even had surround sound thanks to Chris!! The big blow up slide was such a hit during the hot afternoons and we spent lots of time at the beach in the water! Our last day there the kids went tubing and had an absolute blast!!! Then it was time to pack up and head home. It was a really fun weekend although we did really miss the two families that couldn't make it this year. Next year! A few of us ended up coming down with the flu while we were there but we carried on and tried not to let this put a damper on the weekend. Thanks to the Lindsays for another really fun and memorable weekend!
It was so nice to get away and not have cancer right in our faces for the weekend. But of course when we got home I had to think about it once again and went into Cancer Care yesterday to get my staples removed. It was actually a great day and much, much better than I had expected. We (my big sis and I) went into Winnipeg a little early and did some shopping. Then we headed over to the doctors and although we had to wait for a little over an hour it was well worth the wait when we finally got in! My pathology report was back already and it was good news!! NOT metastatic melanoma!!! Yayyyyy!! I am very relieved to have gotten this removed now as there was a definite nodule there 4.2 mm in size. Pathology showed that there were some very rare cells shown and it is possible that this was a metastatic (cancerous) lesion that had healed (possibly because of the treatment I was on or my immune system working overtime). We are very relieved and happy with this news!
While sitting in the waiting room I got a call from my GP and my ultrasound results were back already. They came back normal along with my pap test so I'm on a roll!! I love that as soon as my GP gets my results she now just gives me a call on my cell to let me know right away. Makes me feel like we are staying on top of things. I don't have another appointment scheduled for anything for the next 2 1/2 weeks so will be taking full advantage of this freedom.
I feel so grateful for all of the blessings in my life every day! Most of these blessings are the people that surround me! Love to you all!!
It was so nice to get away and not have cancer right in our faces for the weekend. But of course when we got home I had to think about it once again and went into Cancer Care yesterday to get my staples removed. It was actually a great day and much, much better than I had expected. We (my big sis and I) went into Winnipeg a little early and did some shopping. Then we headed over to the doctors and although we had to wait for a little over an hour it was well worth the wait when we finally got in! My pathology report was back already and it was good news!! NOT metastatic melanoma!!! Yayyyyy!! I am very relieved to have gotten this removed now as there was a definite nodule there 4.2 mm in size. Pathology showed that there were some very rare cells shown and it is possible that this was a metastatic (cancerous) lesion that had healed (possibly because of the treatment I was on or my immune system working overtime). We are very relieved and happy with this news!
While sitting in the waiting room I got a call from my GP and my ultrasound results were back already. They came back normal along with my pap test so I'm on a roll!! I love that as soon as my GP gets my results she now just gives me a call on my cell to let me know right away. Makes me feel like we are staying on top of things. I don't have another appointment scheduled for anything for the next 2 1/2 weeks so will be taking full advantage of this freedom.
I feel so grateful for all of the blessings in my life every day! Most of these blessings are the people that surround me! Love to you all!!
Sunday, July 24, 2011
So just a little update on things...
I did see the oncology surgeon (actually her resident - but not the same one that did my biopsy)and my instincts were right, the lump was still in my arm. I really was trying to convince myself that it was scar tissue or something. After feeling my arm they decided that it was best to get it out so I was scheduled for an excision the following week which I had done last Tuesday. I was expecting the same sort of procedure as last time but she decided to excise a larger area to make sure that she got it so I ended up leaving with 9 staples in my arm. I am relieved to have this over with and look forward to hearing what the pathology comes back as. The first pathology report did say that it was normal tissue - they couldn't find any abnormal tissue which should have been the first clue that they missed it. Anyway, we examined the lump that came out and it really doesn't look like anything concerning (it wasn't black) but she is putting a rush on it so hopefully we will hear something soon. They let my sister stay in the room during the procedure which isn't the norm but it was really nice having that support there. It is so important to advocate for yourself and know exactly what is happening.
This week I have a scan of my pelvis and then we are spending the long weekend with family. I am so looking forward to this weekend! I am feeling alot better than I was a few weeks ago. My energy is up and I am ready to have some fun!
Hope you all enjoy the long weekend!!!
I did see the oncology surgeon (actually her resident - but not the same one that did my biopsy)and my instincts were right, the lump was still in my arm. I really was trying to convince myself that it was scar tissue or something. After feeling my arm they decided that it was best to get it out so I was scheduled for an excision the following week which I had done last Tuesday. I was expecting the same sort of procedure as last time but she decided to excise a larger area to make sure that she got it so I ended up leaving with 9 staples in my arm. I am relieved to have this over with and look forward to hearing what the pathology comes back as. The first pathology report did say that it was normal tissue - they couldn't find any abnormal tissue which should have been the first clue that they missed it. Anyway, we examined the lump that came out and it really doesn't look like anything concerning (it wasn't black) but she is putting a rush on it so hopefully we will hear something soon. They let my sister stay in the room during the procedure which isn't the norm but it was really nice having that support there. It is so important to advocate for yourself and know exactly what is happening.
This week I have a scan of my pelvis and then we are spending the long weekend with family. I am so looking forward to this weekend! I am feeling alot better than I was a few weeks ago. My energy is up and I am ready to have some fun!
Hope you all enjoy the long weekend!!!
Monday, July 11, 2011
Care-Free??
Well, we have sure been enjoying these past few weeks of sunshine! It has been so beautiful here! June was so busy with finishing up school and celebrating our two oldest boys' birthdays, 10 and 13 which is so hard to believe. Where does the time go? Jeff & I celebrated our anniversary - 11 years. We had a get together with the family for my mom's birthday! My parents celebrated their 45th anniversary last week. "45 years of happy love" as my 10-year old put it. Not to mention we had a BBQ at our place to celebrate Canada Day. The fireworks out here in Stonewall are amazing every year. So as you can tell we have been busy doing lots of celebrating! It's been nice too spending the days with the boys swimming and having time to relax not needing to be anywhere really at any time. It's been a nice change of pace. Of course though it hasn't been all fun...
I did wind up back at the doctor's last week (I can't seem to get away from that place) with some new issues. We don't really know if it's the Interferon that has done a number on my body or if this is from something else but my iron levels have been affected among other things so while I'm drinking extra green smoothies (lots of spinach) I am waiting for an appointment for an ultrasound and a consult with a gynacologist. I won't go into details but some of these symptoms are gyne-related. I am feeling pretty drained and tired but not nearly as much as I did a few months ago so hopefully the iron and B12 that I am now taking will take care of things and we can figure out what exactly is going on quickly.
Also, I am back to see the surgeon about the biopsy that I had done several weeks ago. It seems as things have healed up, a lump is still obvious in my arm and so now I hope that the area of concern was actually removed. There has been some confusion about what the pathology report actually came back as. I have been told that it was normal tissue and also that it was a mole so hopefully, at this appointment she can clarify things and maybe reassure me that the correct area was removed. She wasn't the one actually doing the biopsy, it was a resident. I've been trying to ignore this for the past few weeks but decided it was better to get it checked out. Will find out on Wednesday....
So the fun never ends!
I have learned this from the past week though: Trying to carve out a large piece of time completely free of health concerns at this point and time is not possible for me. My body (and mind) has been through alot over the past two years and now needs the time to heal. Trying to bounce right back into life before cancer is just making me feel like I'm failing because I can't do it. Longing for life without cancer is only leaving me feeling frustrated and I'm realizing that it's impossible to make things different then what they really are. It's difficult to shift this way of thinking. I have always thought of myself as a healthy person. When someone asks (usually a new doctor) how my health is my automatic response is "Great! I'm healthy, no problems. Oh yeah, except for the cancer. Other than that I'm really healthy." I sort of thought that in life after treatment I would be able to believe this but the reality is finally sinking in. Wikipedia tells me that I have a 9-15% chance of a 5-year survival - not liking those odds. Just so everyone knows, I don't believe in statistics, I am not a statistic and I don't feel that anyone can predict what will happen in the future. But the truth is I do read them. My doctor does not like to discuss prognosis with me because he can't see the future. So I guess this leaves me with either scenerio A - I am in that 9-15% who survive at least 5 years, or B - I'm not, or C - I am different and when I'm 90-years old will be sitting in my rocking chair on my porch finally feeling like I have beaten cancer giving high-fives to everyone passing by!
If I had a choice, I would choose scenerio C!
So, although this summer isn't looking like it will be as care-free as I thought, it will definitely be fun-filled! We are planning a couple of weekend trips to get away and have some fun with the kids. I guess it comes back to balance again. Taking care of what needs to be done and then having some fun! My plans to return to work in the fall havn't changed and I am working at getting everything in place for this to happen. I am actually really looking forward to it! Life is all new now and will take some adjusting to figure everything out and find a balance. I do fully understand now how important it is to live in the present. The past is done and we can't change what has happened and the future is unknown so the only thing that I am sure about is this very moment.
Yesterday is history. Tomorrow is a mystery. And today? Today is a gift. That's why we call it the present. ~Babatunde Olatunji
I did wind up back at the doctor's last week (I can't seem to get away from that place) with some new issues. We don't really know if it's the Interferon that has done a number on my body or if this is from something else but my iron levels have been affected among other things so while I'm drinking extra green smoothies (lots of spinach) I am waiting for an appointment for an ultrasound and a consult with a gynacologist. I won't go into details but some of these symptoms are gyne-related. I am feeling pretty drained and tired but not nearly as much as I did a few months ago so hopefully the iron and B12 that I am now taking will take care of things and we can figure out what exactly is going on quickly.
Also, I am back to see the surgeon about the biopsy that I had done several weeks ago. It seems as things have healed up, a lump is still obvious in my arm and so now I hope that the area of concern was actually removed. There has been some confusion about what the pathology report actually came back as. I have been told that it was normal tissue and also that it was a mole so hopefully, at this appointment she can clarify things and maybe reassure me that the correct area was removed. She wasn't the one actually doing the biopsy, it was a resident. I've been trying to ignore this for the past few weeks but decided it was better to get it checked out. Will find out on Wednesday....
So the fun never ends!
I have learned this from the past week though: Trying to carve out a large piece of time completely free of health concerns at this point and time is not possible for me. My body (and mind) has been through alot over the past two years and now needs the time to heal. Trying to bounce right back into life before cancer is just making me feel like I'm failing because I can't do it. Longing for life without cancer is only leaving me feeling frustrated and I'm realizing that it's impossible to make things different then what they really are. It's difficult to shift this way of thinking. I have always thought of myself as a healthy person. When someone asks (usually a new doctor) how my health is my automatic response is "Great! I'm healthy, no problems. Oh yeah, except for the cancer. Other than that I'm really healthy." I sort of thought that in life after treatment I would be able to believe this but the reality is finally sinking in. Wikipedia tells me that I have a 9-15% chance of a 5-year survival - not liking those odds. Just so everyone knows, I don't believe in statistics, I am not a statistic and I don't feel that anyone can predict what will happen in the future. But the truth is I do read them. My doctor does not like to discuss prognosis with me because he can't see the future. So I guess this leaves me with either scenerio A - I am in that 9-15% who survive at least 5 years, or B - I'm not, or C - I am different and when I'm 90-years old will be sitting in my rocking chair on my porch finally feeling like I have beaten cancer giving high-fives to everyone passing by!
If I had a choice, I would choose scenerio C!
So, although this summer isn't looking like it will be as care-free as I thought, it will definitely be fun-filled! We are planning a couple of weekend trips to get away and have some fun with the kids. I guess it comes back to balance again. Taking care of what needs to be done and then having some fun! My plans to return to work in the fall havn't changed and I am working at getting everything in place for this to happen. I am actually really looking forward to it! Life is all new now and will take some adjusting to figure everything out and find a balance. I do fully understand now how important it is to live in the present. The past is done and we can't change what has happened and the future is unknown so the only thing that I am sure about is this very moment.
Yesterday is history. Tomorrow is a mystery. And today? Today is a gift. That's why we call it the present. ~Babatunde Olatunji
Tuesday, June 21, 2011
Feeling Free!!!
Hi Everyone!
I hope you are all enjoying some sunshine (responsibly) and having a good start to your summer!
Sometimes having cancer can be like having a full time job. This is how it has felt like around our house the last couple of weeks. I was determined to not let these latest doctors appointments and procedures ruin my happy feeling of being off the Interferon. I really am feeling amazingly better! Like I said in my last post, I was going to meet with the thyroid doctor and that visit went really smoothly. My ultrasound didn't show any drastic changes over the past 6 months so he discharged me to be followed up by my GP. We will be keeping an eye on my thyroid function levels and I will be going for another thyroid ultrasound in the next year.
I did have a few lumps and bumps removed over three weeks ago and finally got the pathology back on Monday which came back benign. No cancer! What a relief! I was trying not to think of what would happen if these came back malignant. But sometimes it's really hard not to when you know that it is possible. More treatment? More scans and tests? I prayed alot over the past few weeks and this did two things for me. It made me feel better and not so worried and it also worked! They were answered and now I don't have to worry about -what if? My whole family just really needs a fun-filled, worry free summer and I am determined to make that happen.
I was asked to do a few little chats at Cancer Cancer about my experiences. One was for a group of doctors (about 20) and it went really well. They were so interested in what I had to say so that was great! I got some very positive feedback although I was a little nervous. I was able to talk to them about the issues that young adults are faced with specifically. Delay in diagnosis, being too young to have cancer which we all know is not true. I only had about 15 minutes but it ended up being much longer and they asked some really great questions.
I was also asked to speak at the Melanoma Information night last week. I was even more nervous at this one but am finding that sharing my story gets easier each time. In front of a theatre full of melanoma survivors, their families and our medical team I shared my experiences basically in the same way that I write my blog. I had some wonderful people come up to me afterwards and connecting with them was amazing. I remember sitting in that same theatre one year ago wondering where I would be now. Really wondering if one year later I would still be here... So it was really great to be standing there proving that we can beat this horrible disease.
I have been NED (no evidence of disease) for a little over a year and have already outlived the expected survival rates and it feels good.
I am still taking my Mindfullness Based Stress Reduction course and actually find that sometimes it is just too much for me. I skipped last week because I just felt completely overwhelmed with everything and not feeling like being too mindful. I felt angry and full of sadness all at the same time. We lost another friend to this horrible disease. I still can't think of it without tearing up and this intense sadness filling up my heart. I have to believe that he is up there flying, free and happy, not in pain anymore. I will never forget all the laughs and fun that we had, Caio. xoxo
It is not always easy to live in this world full of cancer where you connect at such a deep level with people and then have to say goodbye so soon. I can't imagine, though, going through this experience without that connection.
When I saw my oncologist last week we talked about what happens next. Basically, I get a break from doctors, tests, and scans for the summer. My blood work has bounced right back and is pretty much normal now. All of my scans have been coming back stable. I'm feeling great so now we enjoy the summer! I did talk to him about taking vitamins and supplements and he discourages me from doing this. Apparently there was a study done in which a group of people were given anti-oxidants (which Dr. Oz says is so good against cancer) and the other half were given nothing. The group taking the anti-oxidants had their cancer return much sooner than the group taking nothing. Well, I obviously don't want to be taking anything that is going to cause this to happen so what do I do? There are so many different supplements and vitamins out there that supposedly help your immune system and make you better able to fight this but how do I decide which ones I should be taking? It is all so overwhelming. My oncologist says that I am healthy and young so don't need anything but a healthy, normal diet. I'm really not sure which information to believe and don't have a tonne of money to be throwing around on things that have no merit and that will actually harm me. I'll have to do alot more thinking and reading up about what is best for me.
I have changed my diet quite a bit over the past year and a half; especially being on the Interferon because it made me nauseous most of the time. I do still love my blender and make alot of smoothies. It's amazing how much spinach you can get in there! Add a little pineapple and mango and I feel like I should be on a nice hot beach somewhere! Flax is my new best friend. I put it in everything! Quinoa is my new favorite "rice". It is so yummy and much healthier for you. We planted a big garden this year and can't wait to watch all those fresh veggies and herbs coming up. My goal is to eat as naturally as possible and completely eliminate any processed foods and sugar from my diet.
It feels really great to be able to go for a walk without being completely exhausted and wondering if I will make it back home again!. I have been out walking/running my dog everyday and it's great for both of us. I don't take this gift lightly. I remember a week or so after the brain surgery, I was at the gym with my sisters walking VERY SLOWLY on the treadmill and feeling like I just wanted to run but physically couldn't. I now don't take this for granted. I love the feeling I get when I'm running - Free!
I spent the most amazing day with my cousin, Sheri, a few weeks ago! Let me just say this - I came home revitalized and feeling so good about myself and the feeling hasn't worn off yet. It has given me a boost in self-confidence. (when you are sick this really does get knocked way down) I will never forget this day and am very grateful for it! Thank you!!
I have really been living it up these last few weeks and although life isn't always full of roses, it makes me appreciate them even more when they do come along. These wonderful things that happen to us everyday sometimes get covered by all the bad stuff going on and we don't pay much attention to them. They are there.
Cheers to a beautiful, care-free summer full of fun!!!
I hope you are all enjoying some sunshine (responsibly) and having a good start to your summer!
Sometimes having cancer can be like having a full time job. This is how it has felt like around our house the last couple of weeks. I was determined to not let these latest doctors appointments and procedures ruin my happy feeling of being off the Interferon. I really am feeling amazingly better! Like I said in my last post, I was going to meet with the thyroid doctor and that visit went really smoothly. My ultrasound didn't show any drastic changes over the past 6 months so he discharged me to be followed up by my GP. We will be keeping an eye on my thyroid function levels and I will be going for another thyroid ultrasound in the next year.
I did have a few lumps and bumps removed over three weeks ago and finally got the pathology back on Monday which came back benign. No cancer! What a relief! I was trying not to think of what would happen if these came back malignant. But sometimes it's really hard not to when you know that it is possible. More treatment? More scans and tests? I prayed alot over the past few weeks and this did two things for me. It made me feel better and not so worried and it also worked! They were answered and now I don't have to worry about -what if? My whole family just really needs a fun-filled, worry free summer and I am determined to make that happen.
I was asked to do a few little chats at Cancer Cancer about my experiences. One was for a group of doctors (about 20) and it went really well. They were so interested in what I had to say so that was great! I got some very positive feedback although I was a little nervous. I was able to talk to them about the issues that young adults are faced with specifically. Delay in diagnosis, being too young to have cancer which we all know is not true. I only had about 15 minutes but it ended up being much longer and they asked some really great questions.
I was also asked to speak at the Melanoma Information night last week. I was even more nervous at this one but am finding that sharing my story gets easier each time. In front of a theatre full of melanoma survivors, their families and our medical team I shared my experiences basically in the same way that I write my blog. I had some wonderful people come up to me afterwards and connecting with them was amazing. I remember sitting in that same theatre one year ago wondering where I would be now. Really wondering if one year later I would still be here... So it was really great to be standing there proving that we can beat this horrible disease.
I have been NED (no evidence of disease) for a little over a year and have already outlived the expected survival rates and it feels good.
I am still taking my Mindfullness Based Stress Reduction course and actually find that sometimes it is just too much for me. I skipped last week because I just felt completely overwhelmed with everything and not feeling like being too mindful. I felt angry and full of sadness all at the same time. We lost another friend to this horrible disease. I still can't think of it without tearing up and this intense sadness filling up my heart. I have to believe that he is up there flying, free and happy, not in pain anymore. I will never forget all the laughs and fun that we had, Caio. xoxo
It is not always easy to live in this world full of cancer where you connect at such a deep level with people and then have to say goodbye so soon. I can't imagine, though, going through this experience without that connection.
When I saw my oncologist last week we talked about what happens next. Basically, I get a break from doctors, tests, and scans for the summer. My blood work has bounced right back and is pretty much normal now. All of my scans have been coming back stable. I'm feeling great so now we enjoy the summer! I did talk to him about taking vitamins and supplements and he discourages me from doing this. Apparently there was a study done in which a group of people were given anti-oxidants (which Dr. Oz says is so good against cancer) and the other half were given nothing. The group taking the anti-oxidants had their cancer return much sooner than the group taking nothing. Well, I obviously don't want to be taking anything that is going to cause this to happen so what do I do? There are so many different supplements and vitamins out there that supposedly help your immune system and make you better able to fight this but how do I decide which ones I should be taking? It is all so overwhelming. My oncologist says that I am healthy and young so don't need anything but a healthy, normal diet. I'm really not sure which information to believe and don't have a tonne of money to be throwing around on things that have no merit and that will actually harm me. I'll have to do alot more thinking and reading up about what is best for me.
I have changed my diet quite a bit over the past year and a half; especially being on the Interferon because it made me nauseous most of the time. I do still love my blender and make alot of smoothies. It's amazing how much spinach you can get in there! Add a little pineapple and mango and I feel like I should be on a nice hot beach somewhere! Flax is my new best friend. I put it in everything! Quinoa is my new favorite "rice". It is so yummy and much healthier for you. We planted a big garden this year and can't wait to watch all those fresh veggies and herbs coming up. My goal is to eat as naturally as possible and completely eliminate any processed foods and sugar from my diet.
It feels really great to be able to go for a walk without being completely exhausted and wondering if I will make it back home again!. I have been out walking/running my dog everyday and it's great for both of us. I don't take this gift lightly. I remember a week or so after the brain surgery, I was at the gym with my sisters walking VERY SLOWLY on the treadmill and feeling like I just wanted to run but physically couldn't. I now don't take this for granted. I love the feeling I get when I'm running - Free!
I spent the most amazing day with my cousin, Sheri, a few weeks ago! Let me just say this - I came home revitalized and feeling so good about myself and the feeling hasn't worn off yet. It has given me a boost in self-confidence. (when you are sick this really does get knocked way down) I will never forget this day and am very grateful for it! Thank you!!
I have really been living it up these last few weeks and although life isn't always full of roses, it makes me appreciate them even more when they do come along. These wonderful things that happen to us everyday sometimes get covered by all the bad stuff going on and we don't pay much attention to them. They are there.
Cheers to a beautiful, care-free summer full of fun!!!
Sunday, May 29, 2011
Finished and Feeling Fantastic!!
So, on Wednesday May 11th I did my last Interferon injection and went to bed feeling a huge relief, excited to finally start feeling better. I woke up Thursday morning feeling horrible and I think part of the reason was that I was feeling great mentally (relieved and happy to have this treatment overwith) but physically realizing that it was going to take some time. Now two weeks have gone by and I can actually see improvements physically every day. It's great!! I've been out in the garden and able to do all of my stuff around the house without a huge effort. I've really noticed that doing laundry, running up and down the basement stairs, is not as exhausting now and I can fly up and down those stairs with no problem. I have way more energy for the kids and alot more patience too! lol My skin issues have almost all healed up and are resolving on their own. As I watch my body heal before my eyes it amazes me. We need to look after our bodies so that when we need them to look after us, they can.
I saw my Oncologist on the same day I took my last injection and a few things came out of that visit. He sent me for a chest x-ray because of some shortness of breath and a cough that I have had. The results were normal and I will be going for a CT scan if this persists. Interferon is known to cause these symptoms too so hopefully this will clear up now that I am finished. He also sent me to a Surgical Oncologist about a few lumps and bumps in my arm and leg. We were sort of watching them for a while but decided that since I was done my treatment we would go ahead and have a surgical consult. I saw the surgeon and had these removed last week so now we are waiting for the results saying that this is not cancer. I go back in a little over a week to have my stitches removed and hopefully my pathology report will be back then. Last week, I also had an ultrasound done of my thyroid and I see that doctor in a week and a half to talk about what we are going to do about that. It will be another busy few weeks but I am not letting any of this put a downer on how I am feeling now. I feel great!!
Speaking of which, a few weeks ago I went to the Look Good, Feel Better afternoon at Cancer Care. It was awesome and they sent us home with lots of free loot! (skin care and makeup products) Loved seeing that they are giving out a lot of information about sun safety and lots of free sunscreen! This is a program set up for anyone going through cancer treatments and needing a pick-me-up. I walked out of there feeling and looking so much better. They also talk about hair loss, wigs, wraps and how to feel great with no hair. Bald is beautiful!
I am also taking a course through Cancer Care called Mindfulness Based Stress Reduction. I was very unsure of this at the beginning but after going weekly for the past few weeks I am so glad that I stayed with it. It has really helped me to be able to stay in the present moment and breathe!
So, what did we do to celebrate and say good bye to Interferon? We had a party!!! It was so nice to be around family and the kids had an absolute blast with their cousins! We spent the day outside and it was beautiful. So I feel like a new chapter is beginning and it feels really good!
I was driving with my six year old in the backseat the other day and he starts asking me all about cancer and why people die from it. I was actually shocked that at his age he would be thinking about this so I took a few minutes to think of something comforting and appropriate to say. After a quiet pause I thought I'd better ask him what he was thinking about to see where he was at. His response was...... Cotton Candy.
Thanks to you all for your support and love!
Enjoy every day!!!
I saw my Oncologist on the same day I took my last injection and a few things came out of that visit. He sent me for a chest x-ray because of some shortness of breath and a cough that I have had. The results were normal and I will be going for a CT scan if this persists. Interferon is known to cause these symptoms too so hopefully this will clear up now that I am finished. He also sent me to a Surgical Oncologist about a few lumps and bumps in my arm and leg. We were sort of watching them for a while but decided that since I was done my treatment we would go ahead and have a surgical consult. I saw the surgeon and had these removed last week so now we are waiting for the results saying that this is not cancer. I go back in a little over a week to have my stitches removed and hopefully my pathology report will be back then. Last week, I also had an ultrasound done of my thyroid and I see that doctor in a week and a half to talk about what we are going to do about that. It will be another busy few weeks but I am not letting any of this put a downer on how I am feeling now. I feel great!!
Speaking of which, a few weeks ago I went to the Look Good, Feel Better afternoon at Cancer Care. It was awesome and they sent us home with lots of free loot! (skin care and makeup products) Loved seeing that they are giving out a lot of information about sun safety and lots of free sunscreen! This is a program set up for anyone going through cancer treatments and needing a pick-me-up. I walked out of there feeling and looking so much better. They also talk about hair loss, wigs, wraps and how to feel great with no hair. Bald is beautiful!
I am also taking a course through Cancer Care called Mindfulness Based Stress Reduction. I was very unsure of this at the beginning but after going weekly for the past few weeks I am so glad that I stayed with it. It has really helped me to be able to stay in the present moment and breathe!
So, what did we do to celebrate and say good bye to Interferon? We had a party!!! It was so nice to be around family and the kids had an absolute blast with their cousins! We spent the day outside and it was beautiful. So I feel like a new chapter is beginning and it feels really good!
I was driving with my six year old in the backseat the other day and he starts asking me all about cancer and why people die from it. I was actually shocked that at his age he would be thinking about this so I took a few minutes to think of something comforting and appropriate to say. After a quiet pause I thought I'd better ask him what he was thinking about to see where he was at. His response was...... Cotton Candy.
Thanks to you all for your support and love!
Enjoy every day!!!
Friday, April 15, 2011
Stonewall screening
Good Morning to you!!
Well, I finally get a chance to tell you all about Monday nights screening of Wrong Way to Hope in Stonewall. It was an awesome, powerful, inspiring night full of stories. It was so great to connect with Mikey and Bonnie again and to meet Jason and Cassandra (friends of theirs helping them with the tour). We met up at our place for something to eat before heading to the hall to set up. Everyone really pitched in and in no time we had the hall set up and people started filing in (around 80 guests). The night started out with a few words from Jeff & I. I was super nervous and didn't get out everything that I wanted to say but then Mike & Bonnie with all of their great energy and excitement did a great intro to the movie. My great friend, Dawn stood up and sang a beautiful song by Pink - Glitter in the Air. You are amazing Dawn! It was absolutely beautiful. Gavin (Dawn's friends' 14 yo son) accompanied her on keyboard and is soooo very talented. It started off the evening perfectly. Then it was time for the movie....
If you havn't seen this movie it is a definite Must See. After the movie was over we had a little discussion with the audience and a few questions were answered. Now, usually in a movie you can relate to a certain character depending on what you have had happen in your own life. In this movie, for me, it was Cheryl. Everything that she talked about in the movie I related to. So it was wonderful that she was able to come out to the screening and we could connect. We also had a few special guests come out from Cancer Care to provide information and support to people. These connections that I have made have really benefited me so I hope that others get the same opportunity.
Next was Cake Time!! The cakes were awesome and I thank everyone who baked or brought cakes for this night. They were YUMMY and very plentiful! This was a great time to talk to everyone about what they thought of the movie and to hear about their struggles and triumphs with cancer. We all connected with alot of people and it made me feel like we were defying cancer. This disease does a great job of isolating it's victims and making you feel like you are the only person in the world going through it. This night, as I looked around the room and watched people laughing, crying, bonding and connecting with eachother it proved to me that we can change this aspect of cancer. No one should have to face this alone. Together makes us much more powerful against this disease!
Everyone that I have talked to since this screening was very inspired by this film and very grateful for the opportunity to see it. I thank Mikey and Bonnie for not only making it but also for sharing it with all of us by doing this cross country tour. You are really changing lives with this tour. Keep Huck'n it Huge!!!
This night could not have happened without the support of my family and friends. Thanks for all that you do!! Jeff, Mom & Dad, Laura & Mike, Christine & Dan, Auntie Debbie & Earl, and Dawn - Thank you for being the amazing, caring people that you are! I am so grateful to have each one of you in my life!! xoxo
Bonnie did a great job blogging about this night and has some fabulous pictures. You can check it out at http://wrongwaytohope.com/2011/04/stonewall-screening/. I'll try and link it up to my blog.
Stop, breathe, live.....
Well, I finally get a chance to tell you all about Monday nights screening of Wrong Way to Hope in Stonewall. It was an awesome, powerful, inspiring night full of stories. It was so great to connect with Mikey and Bonnie again and to meet Jason and Cassandra (friends of theirs helping them with the tour). We met up at our place for something to eat before heading to the hall to set up. Everyone really pitched in and in no time we had the hall set up and people started filing in (around 80 guests). The night started out with a few words from Jeff & I. I was super nervous and didn't get out everything that I wanted to say but then Mike & Bonnie with all of their great energy and excitement did a great intro to the movie. My great friend, Dawn stood up and sang a beautiful song by Pink - Glitter in the Air. You are amazing Dawn! It was absolutely beautiful. Gavin (Dawn's friends' 14 yo son) accompanied her on keyboard and is soooo very talented. It started off the evening perfectly. Then it was time for the movie....
If you havn't seen this movie it is a definite Must See. After the movie was over we had a little discussion with the audience and a few questions were answered. Now, usually in a movie you can relate to a certain character depending on what you have had happen in your own life. In this movie, for me, it was Cheryl. Everything that she talked about in the movie I related to. So it was wonderful that she was able to come out to the screening and we could connect. We also had a few special guests come out from Cancer Care to provide information and support to people. These connections that I have made have really benefited me so I hope that others get the same opportunity.
Next was Cake Time!! The cakes were awesome and I thank everyone who baked or brought cakes for this night. They were YUMMY and very plentiful! This was a great time to talk to everyone about what they thought of the movie and to hear about their struggles and triumphs with cancer. We all connected with alot of people and it made me feel like we were defying cancer. This disease does a great job of isolating it's victims and making you feel like you are the only person in the world going through it. This night, as I looked around the room and watched people laughing, crying, bonding and connecting with eachother it proved to me that we can change this aspect of cancer. No one should have to face this alone. Together makes us much more powerful against this disease!
Everyone that I have talked to since this screening was very inspired by this film and very grateful for the opportunity to see it. I thank Mikey and Bonnie for not only making it but also for sharing it with all of us by doing this cross country tour. You are really changing lives with this tour. Keep Huck'n it Huge!!!
This night could not have happened without the support of my family and friends. Thanks for all that you do!! Jeff, Mom & Dad, Laura & Mike, Christine & Dan, Auntie Debbie & Earl, and Dawn - Thank you for being the amazing, caring people that you are! I am so grateful to have each one of you in my life!! xoxo
Bonnie did a great job blogging about this night and has some fabulous pictures. You can check it out at http://wrongwaytohope.com/2011/04/stonewall-screening/. I'll try and link it up to my blog.
Stop, breathe, live.....
Thursday, March 31, 2011
Hope
I hope everyone is enjoying the beautiful weather that we have been having. I'm missing the sunshine today but at least we have a lot less snow around. I went in and saw my oncologist yesterday and got the go ahead to continue on with my treatment. Can't beleive that we're down to 6 weeks now!! I have completed 42 of the 48 weeks in phase 2 of this treatment so far!! So my big question to him yesterday was - then what? Basically, I will be getting very closely monitored with visits back to him every 3 months and my scans every 3-4 months. Next month in May I will be going for another ultrasound on my thyroid and will see that surgeon again to see if anything has changed there. I will also be followed up annually by my Dermatologist to watch for any new spots on my skin. I feel myself already transitioning (slowly) into life after cancer. It is a very strange thing to go from just wanting one more Christmas with my family in 2009 to now wanting and being hopeful that I will have 50 with them. Right now we hope that the Interferon did its job and that I will have many, many years cancer-free.
Hope - such a powerful word when you sometimes struggle to find it. Hope is my best friend. It's what gets me through most days. She isn't always there for me but somehow I end up finding my way back to her. When you are diagnosed with a disease that is known to be "fatal", "deadly", "leaves no survivors" you hang on to hope and try not to let her go.
I am feeling a bit torn between being overjoyed that I am almost done with the treatment and fearful that this leaves me open and vulnerable to melanoma again. My immune system has been working double time fighting against this. What happens when that wears off? This is when I work hard at boosting my own immune system which is what I will be focusing on once I'm done the Interferon.
I am also focused on raising awareness of the support and services that are out there for people with cancer. Before I had cancer, I just assumed that when you were diagnosed these supports and services were handed to you for you to choose what you needed or wanted. Little did I know that you acually have to search these services out on your own which can be very overwhelming and exhausting when you have just found out that you have cancer. Did you know that free parking is available at cancer care for evening chemotherapy sessions? No one tells you this and we all know how expensive parking can be down town. Free housecleaning services for those in treatment? Wigs and skin care classes? It is not easy to navigate yourself through the system, especially when you are not well. This needs to change.
My husband is alot less hairy these days after participating in the Shave for the Brave! He raised over $700 for YACC! We want to send a huge thank you out to everyone for their support! A special thank you to Korner Kuts! This will make a difference in someone's life.
We have been busy getting things ready for the screening here in Stonewall on April 11th of "Wrong Way to Hope". Looking forward to an inspiring evening full of hope! Tickets are available at www.WrongWaytoHope.com and will also be available at the door by donation. These screenings are being held all across Canada and you can check out the Wrong Way to Hope website for all the locations and dates. One will also be held in Winnipeg on April 12 at Cancer Care. It really is an amazing movie and since most of us have been touched by cancer in one way or another really is a movie everyone must see.
Like all of you, I struggle sometimes to find balance in my life. Cancer has really taken over a huge part of my life so therefore the life of my family. I sometimes have to force it from my mind and concentrate on other things which can be hard. I had a really great day last week with Tyler (my oldest). We went to see Red Riding Hood and then Dairy Queen for a treat. Great movie!! Gavin and I went to check out the Titanic exhibit in Winnipeg. It was awesome and very fitting since he has been infactuated with the Titanic since he was really little. Kaden's day is coming up and he's chosen to go play glow in the dark mini golf. Having one on one time with each of the boys has been so special for me and for them. It really connects us in a way that is hard to do during the rushes of everyday life. They are changing and growing up so quickly!! Jeff & I are also making plans for an evening out together soon.
I guess in a way I'm trying to make up for lost time. I havn't had the energy to be the wife and mother that my boys deserve. Hopefully, when this treatment comes to an end my body and spirit will bounce back so that I can give everyone what the need again. One thing that has never faltered is how much I love them - all 4 of them!!
Hope - such a powerful word when you sometimes struggle to find it. Hope is my best friend. It's what gets me through most days. She isn't always there for me but somehow I end up finding my way back to her. When you are diagnosed with a disease that is known to be "fatal", "deadly", "leaves no survivors" you hang on to hope and try not to let her go.
I am feeling a bit torn between being overjoyed that I am almost done with the treatment and fearful that this leaves me open and vulnerable to melanoma again. My immune system has been working double time fighting against this. What happens when that wears off? This is when I work hard at boosting my own immune system which is what I will be focusing on once I'm done the Interferon.
I am also focused on raising awareness of the support and services that are out there for people with cancer. Before I had cancer, I just assumed that when you were diagnosed these supports and services were handed to you for you to choose what you needed or wanted. Little did I know that you acually have to search these services out on your own which can be very overwhelming and exhausting when you have just found out that you have cancer. Did you know that free parking is available at cancer care for evening chemotherapy sessions? No one tells you this and we all know how expensive parking can be down town. Free housecleaning services for those in treatment? Wigs and skin care classes? It is not easy to navigate yourself through the system, especially when you are not well. This needs to change.
My husband is alot less hairy these days after participating in the Shave for the Brave! He raised over $700 for YACC! We want to send a huge thank you out to everyone for their support! A special thank you to Korner Kuts! This will make a difference in someone's life.
We have been busy getting things ready for the screening here in Stonewall on April 11th of "Wrong Way to Hope". Looking forward to an inspiring evening full of hope! Tickets are available at www.WrongWaytoHope.com and will also be available at the door by donation. These screenings are being held all across Canada and you can check out the Wrong Way to Hope website for all the locations and dates. One will also be held in Winnipeg on April 12 at Cancer Care. It really is an amazing movie and since most of us have been touched by cancer in one way or another really is a movie everyone must see.
Like all of you, I struggle sometimes to find balance in my life. Cancer has really taken over a huge part of my life so therefore the life of my family. I sometimes have to force it from my mind and concentrate on other things which can be hard. I had a really great day last week with Tyler (my oldest). We went to see Red Riding Hood and then Dairy Queen for a treat. Great movie!! Gavin and I went to check out the Titanic exhibit in Winnipeg. It was awesome and very fitting since he has been infactuated with the Titanic since he was really little. Kaden's day is coming up and he's chosen to go play glow in the dark mini golf. Having one on one time with each of the boys has been so special for me and for them. It really connects us in a way that is hard to do during the rushes of everyday life. They are changing and growing up so quickly!! Jeff & I are also making plans for an evening out together soon.
I guess in a way I'm trying to make up for lost time. I havn't had the energy to be the wife and mother that my boys deserve. Hopefully, when this treatment comes to an end my body and spirit will bounce back so that I can give everyone what the need again. One thing that has never faltered is how much I love them - all 4 of them!!
Sunday, March 20, 2011
Music is healing
Hi everyone!!
It's been another month full of ups and downs. We are in the final stretches of my treatment and can't wait to reach the finish line. I've been focused on living a good life and enjoying it even with all of the side effects I am experiencing. I've turned into somewhat of a concert junkie over the past several weeks. It's the only thing that pushes the numbness out and allows me to feel.... something. I was able to go see Hey Rosetta at the Pyramid. What a great night and a great band! It was lots of fun and they are my new favorite band. A few weeks later, I got the chance to see the Weaker Thans at the West End Cultural centre. Had a great time! The West End Cultural centre is a really great place to check out live music. Then, for the big finale.... Sarah McLachlan at the MTS centre!! She's is absolutely amazing and has the voice of an angel. She put on a really great show and I left there feeling.... ALOT. Not only can she sing but she is doing her part to make the world a better place to live. It really puts things in perspective seeing what is happening in the world right now. Makes me even more grateful to have my family and friends close by and safe.
The boys have been winding down after a busy season of hockey and basketball. Gavin has decided to play hockey in the spring league so that will start up again next month. Tyler and Kaden are taking a break from sports for the spring/summer and I imagine will be practising their skills on the Playstation. We are all really looking forward to the warm weather and then a fun-filled summer!
You've heard me talk about an organization that I have gotten involved with called Young Adult Cancer Canada. I have had the opportunity to go to a retreat and a conference put on and funded by them and they were both life-changing. I really believe that every young adult should have the same opportunity whether it's attending an event like I did or just being able to be connected through their website. Being diagnosed with cancer as a young adult can be very isolating, confusing, scary and stressful. Being connected to a community like YACC can be very healing. This is why Jeff is doing the Shave for the Brave on Monday, March 21 to help raise funds to help get more young adults get through this and be able to start the healing process. You can go to shaveforthebrave.ca for more info and to make a pledge or register to do your own shave for the brave.
Wrong Way to Hope comes to Stonewall!! You know when you watch a really great movie and you want all your friends and family to see it. This is how I feel about this movie. I can't wait to share it with you all and will get the chance to do this on Monday, April, 11 right here in Stonewall. We are holding a special screening of this movie at the Lions Manor @ 7pm with special guests Mike and Bonnie Lang (the producer of this film). Tickets are $10 all with proceeds going towards helping young adults with cancer. To find out more you can go to wrongwaytohope.com. This film tour is making its way across Canada stopping in many cities along the way. We are very fortunate to get this opportunity and can't wait to see them again! Mike and Bonnie are doing amazing work in the world of cancer support and are opening their own retreat centre in Calgary very soon called Peacefield Retreat Centre. Very exciting!!
So this has been what we have been up to this month. I have had a nice break from scans and tests lately enjoying my time off. I have planned to spend a special day with each of my boys in the next couple of weeks. We don't get a whole lot of 1 on 1 time together these days so I am making a point of it and look forward to really connecting with each of the boys. I am a very lucky mom! I am not exactly sure what life will look like after cancer or if there is such a thing but I will keep striving for a good life - for myself, my husband, my beautiful boys, my family, my friends and see where life takes us next.
Be well!
It's been another month full of ups and downs. We are in the final stretches of my treatment and can't wait to reach the finish line. I've been focused on living a good life and enjoying it even with all of the side effects I am experiencing. I've turned into somewhat of a concert junkie over the past several weeks. It's the only thing that pushes the numbness out and allows me to feel.... something. I was able to go see Hey Rosetta at the Pyramid. What a great night and a great band! It was lots of fun and they are my new favorite band. A few weeks later, I got the chance to see the Weaker Thans at the West End Cultural centre. Had a great time! The West End Cultural centre is a really great place to check out live music. Then, for the big finale.... Sarah McLachlan at the MTS centre!! She's is absolutely amazing and has the voice of an angel. She put on a really great show and I left there feeling.... ALOT. Not only can she sing but she is doing her part to make the world a better place to live. It really puts things in perspective seeing what is happening in the world right now. Makes me even more grateful to have my family and friends close by and safe.
The boys have been winding down after a busy season of hockey and basketball. Gavin has decided to play hockey in the spring league so that will start up again next month. Tyler and Kaden are taking a break from sports for the spring/summer and I imagine will be practising their skills on the Playstation. We are all really looking forward to the warm weather and then a fun-filled summer!
You've heard me talk about an organization that I have gotten involved with called Young Adult Cancer Canada. I have had the opportunity to go to a retreat and a conference put on and funded by them and they were both life-changing. I really believe that every young adult should have the same opportunity whether it's attending an event like I did or just being able to be connected through their website. Being diagnosed with cancer as a young adult can be very isolating, confusing, scary and stressful. Being connected to a community like YACC can be very healing. This is why Jeff is doing the Shave for the Brave on Monday, March 21 to help raise funds to help get more young adults get through this and be able to start the healing process. You can go to shaveforthebrave.ca for more info and to make a pledge or register to do your own shave for the brave.
Wrong Way to Hope comes to Stonewall!! You know when you watch a really great movie and you want all your friends and family to see it. This is how I feel about this movie. I can't wait to share it with you all and will get the chance to do this on Monday, April, 11 right here in Stonewall. We are holding a special screening of this movie at the Lions Manor @ 7pm with special guests Mike and Bonnie Lang (the producer of this film). Tickets are $10 all with proceeds going towards helping young adults with cancer. To find out more you can go to wrongwaytohope.com. This film tour is making its way across Canada stopping in many cities along the way. We are very fortunate to get this opportunity and can't wait to see them again! Mike and Bonnie are doing amazing work in the world of cancer support and are opening their own retreat centre in Calgary very soon called Peacefield Retreat Centre. Very exciting!!
So this has been what we have been up to this month. I have had a nice break from scans and tests lately enjoying my time off. I have planned to spend a special day with each of my boys in the next couple of weeks. We don't get a whole lot of 1 on 1 time together these days so I am making a point of it and look forward to really connecting with each of the boys. I am a very lucky mom! I am not exactly sure what life will look like after cancer or if there is such a thing but I will keep striving for a good life - for myself, my husband, my beautiful boys, my family, my friends and see where life takes us next.
Be well!
Wednesday, February 16, 2011
I'm back!
Hi Everyone!
I know it's been awhile but I really havn't felt much like writing lately. I've been stuck in this funk and trying to lift myself out of it. I went in to see my doctor today and like I had already guessed these are all symptoms from the Interferon; fatigue, no energy, headaches.... This is probably going to be the hardest time for me on this treatment. We are getting down to the last three months and my body is wearing down. We have also been battling the flu nonstop at our house, passing it from one person to the next and then starting over again around and around. This obviously doesn't help matters. It's been hard looking after the kids when they are sick when I'm not feeling good myself. But we made it through and now everyone seems back on track and feeling better. Part of this yucky feeling is probably due to the fact that I am tired of this cancer crap. It really feels as though it has been neverending tests and scans and lots of waiting in between.
I found out last week that the thyroid nodule that I had biopsied is benign (not cancerous) and is called a colloid nodule. Apparently it is very common in women and they will be monitoring this every 6 months to make sure that there are no changes. If these nodules continue to grow and start causing problems he will want to go in and remove them but for now I can focus on getting the Interferon done and not worry it. I realized that my doctor is amazing. I never have to wait too long for results and they are very aware of how hard it is for the patient to wait. My thyroid doctor doesn't understand that. After waiting for over three weeks for my biopsy results, the nurse promised me a phone call on the Thursday and guess what? After waiting by the phone all day and getting myself convinced that something really bad was happening, the nurse phoned me back after I left several messages on his voicemail and finally let my know that it was fine - benign. Why do they do that? Why say ,"Oh, the doctor is going to want to talk to you himself about this." And then leave you hanging for five days. It takes less than 5 minutes to call and let me know. Anyway, very happy that my regular Oncologist is much more understanding and is on top of things. And even happier that the results were good.
I also went in for a brain MRI yesterday and when I went in to see my doctor this morning he shocked me by handing me my results. Wow! That was quick! Everything looks good. No changes and everything looks stable. I really should feel overjoyed but instead I almost broke down crying in the lab waiting room. Not sure if this was out of relief or what but I choked it back and did what I needed to get done. Sometimes the feelings I experience I can't even explain.
I had a great chat with my Oncologist and if everything keeps going well I will be able to return to work in the fall. He says that I am doing really well so far and so I need to carry on and continue living my life. We discussed all the new treatments now available for melanoma and he said that since we met a year ago even there has been alot more drugs come out. Granted these are experimental but he is very pumped that these are available and so am I. Hopefully I won't have a reoccurence and so I won't need them but it's good to know that they are there.
So for the next few weeks I am going to forcus on being well. I plan on going for lots of walks, eating healthy, and meditating regularly. I am going to finally use the gift card for the Spa that I received for Christmas and I'm even going to get my hair done next week. This should re-energize me and make me feel better. We are still planning a screening for the Wrong Way to Hope movie in April so stay tuned for more info on that. This should keep me busy and keep my mind off of things for at least some of the time.
Meanwhile, I hope everyone is feeling happy and healthy!
Don't forget to take care of YOU!!
I know it's been awhile but I really havn't felt much like writing lately. I've been stuck in this funk and trying to lift myself out of it. I went in to see my doctor today and like I had already guessed these are all symptoms from the Interferon; fatigue, no energy, headaches.... This is probably going to be the hardest time for me on this treatment. We are getting down to the last three months and my body is wearing down. We have also been battling the flu nonstop at our house, passing it from one person to the next and then starting over again around and around. This obviously doesn't help matters. It's been hard looking after the kids when they are sick when I'm not feeling good myself. But we made it through and now everyone seems back on track and feeling better. Part of this yucky feeling is probably due to the fact that I am tired of this cancer crap. It really feels as though it has been neverending tests and scans and lots of waiting in between.
I found out last week that the thyroid nodule that I had biopsied is benign (not cancerous) and is called a colloid nodule. Apparently it is very common in women and they will be monitoring this every 6 months to make sure that there are no changes. If these nodules continue to grow and start causing problems he will want to go in and remove them but for now I can focus on getting the Interferon done and not worry it. I realized that my doctor is amazing. I never have to wait too long for results and they are very aware of how hard it is for the patient to wait. My thyroid doctor doesn't understand that. After waiting for over three weeks for my biopsy results, the nurse promised me a phone call on the Thursday and guess what? After waiting by the phone all day and getting myself convinced that something really bad was happening, the nurse phoned me back after I left several messages on his voicemail and finally let my know that it was fine - benign. Why do they do that? Why say ,"Oh, the doctor is going to want to talk to you himself about this." And then leave you hanging for five days. It takes less than 5 minutes to call and let me know. Anyway, very happy that my regular Oncologist is much more understanding and is on top of things. And even happier that the results were good.
I also went in for a brain MRI yesterday and when I went in to see my doctor this morning he shocked me by handing me my results. Wow! That was quick! Everything looks good. No changes and everything looks stable. I really should feel overjoyed but instead I almost broke down crying in the lab waiting room. Not sure if this was out of relief or what but I choked it back and did what I needed to get done. Sometimes the feelings I experience I can't even explain.
I had a great chat with my Oncologist and if everything keeps going well I will be able to return to work in the fall. He says that I am doing really well so far and so I need to carry on and continue living my life. We discussed all the new treatments now available for melanoma and he said that since we met a year ago even there has been alot more drugs come out. Granted these are experimental but he is very pumped that these are available and so am I. Hopefully I won't have a reoccurence and so I won't need them but it's good to know that they are there.
So for the next few weeks I am going to forcus on being well. I plan on going for lots of walks, eating healthy, and meditating regularly. I am going to finally use the gift card for the Spa that I received for Christmas and I'm even going to get my hair done next week. This should re-energize me and make me feel better. We are still planning a screening for the Wrong Way to Hope movie in April so stay tuned for more info on that. This should keep me busy and keep my mind off of things for at least some of the time.
Meanwhile, I hope everyone is feeling happy and healthy!
Don't forget to take care of YOU!!
Tuesday, January 18, 2011
The Best News!!
It's Tuesday and usually my worst day on treatment and I feel fabulous!! I am so excited to write this blog this morning to let you all know that I had my thyroid biopsy yesterday and it went amazingly well! I was very nervous both about the procedure itself and the results. But seeing other people going in to the room and coming out with a bandaid on their neck and a smile on their face was very reasuring. My sister came with me and was actually allowed into the room with me during the procedure. The doctor doing it was great! She answered all of our questions and was very forthcoming with any information that we needed. She started with an ultrasound to check things out. There was more discussion and then we went ahead with the biopsy. Now, I am not going to lie and say this was a piece of cake. It really was painful. They did freeze the area first but you can imagine how tender the area of your neck is and what it feels like to have a needle in it. Ouch! I could feel myself sort of breathing slow and felt like I sort of went into myself. (if that makes any sense) I have learned that pain like this doesn't last forever and knowing this I can get through it. Once it was frozen the biopsies were a breeze.
This is what we found out from the biopsy. It is definitely not melanoma! Huge relief! I know the chances were very slim that it would have been but sometimes I find myself in the small majority of people and so know that this is possible. It is very doubtful that this is cancer of any kind since it shows no charecteristics of this. Obviously, we have to wait for the pathology report to come back to be certain but it looks like just a benign nodule! I can't even tell you how relieved this makes us! The thought of dealing with another type of cancer right now was very overwhelming and unimaginable. Now, like a friend of mine said yesterday, we can focus on kicking some melanoma ass!
Some more exciting news - I was interviewed by Girltalk with Marlo the other day and this show will air online Jan. 19th @ 8:30pm CT. Hopefully this will bring some awareness to Melanoma and young adults dealing with cancer. Marlo is starting a show with the topics focused on woman's issues. Definitely worth checking out! You can stream the interview live @ http://girltalkwithmarlo.com.
I can't thank you enough for all the prayers, good thoughts, positive energy... sent the last couple of days. It has been a rough couple of weeks with alot of ups and downs but knowing that I have so much love and support has gotten me through this. Thank you!
This is what we found out from the biopsy. It is definitely not melanoma! Huge relief! I know the chances were very slim that it would have been but sometimes I find myself in the small majority of people and so know that this is possible. It is very doubtful that this is cancer of any kind since it shows no charecteristics of this. Obviously, we have to wait for the pathology report to come back to be certain but it looks like just a benign nodule! I can't even tell you how relieved this makes us! The thought of dealing with another type of cancer right now was very overwhelming and unimaginable. Now, like a friend of mine said yesterday, we can focus on kicking some melanoma ass!
Some more exciting news - I was interviewed by Girltalk with Marlo the other day and this show will air online Jan. 19th @ 8:30pm CT. Hopefully this will bring some awareness to Melanoma and young adults dealing with cancer. Marlo is starting a show with the topics focused on woman's issues. Definitely worth checking out! You can stream the interview live @ http://girltalkwithmarlo.com.
I can't thank you enough for all the prayers, good thoughts, positive energy... sent the last couple of days. It has been a rough couple of weeks with alot of ups and downs but knowing that I have so much love and support has gotten me through this. Thank you!
Friday, January 14, 2011
1 down and 1 to go!
Just a quick update to share my results of the scan. Last week I went in for a chest, abdomen and pelvic scan to see how things are looking, especially in the lungs. Everything looks good. No signs of disease! No cancer! Wow! What a relief. I was pretty nervous about getting these results back because they were checking things so closely. Now I can focus on getting this biopsy of my thyroid done. I got the report back from the thyroid ultrasound and this shows about 6 nodules (lumps). They are ranging in size from 6-30 mm. Hard to believe these are all in my neck and I'm not having any symptoms. Just shows me once again how amazing our bodies are. We are really hoping that these are all benign (not cancer) and can be removed easily if necessary. We should get these results in the next couple of weeks.
Being on the Interferon has been giving me some trouble these days. I was having alot of nausea and some vomiting so am now on a drug to hopefully prevent this. So far it is working really well and I am feeling much better. The only downside is that this drug causes other side effects which I am dealing with. My skin has been very irritated and itching like crazy. (I actually scratched a mole off my back because of it) Oops! Apparently, this is because of the Interferon and hopefully we can get it under control. My face is all blotchy and so I've been trying all kinds of creams and lotions with no luck. My sister brought me over a new one last night so hopefully this one is it! Over half way done now!!!
Meanwhile, hocky....hockey....and more hockey. Sounds like we'll be at the rink pretty much all weekend. It will be good to get my mind off of things and watch the kids play. It is so worth it to push myself out of the house to watch a few games. Makes me feel somewhat normal. Go Stonewall Go!!!!
Being on the Interferon has been giving me some trouble these days. I was having alot of nausea and some vomiting so am now on a drug to hopefully prevent this. So far it is working really well and I am feeling much better. The only downside is that this drug causes other side effects which I am dealing with. My skin has been very irritated and itching like crazy. (I actually scratched a mole off my back because of it) Oops! Apparently, this is because of the Interferon and hopefully we can get it under control. My face is all blotchy and so I've been trying all kinds of creams and lotions with no luck. My sister brought me over a new one last night so hopefully this one is it! Over half way done now!!!
Meanwhile, hocky....hockey....and more hockey. Sounds like we'll be at the rink pretty much all weekend. It will be good to get my mind off of things and watch the kids play. It is so worth it to push myself out of the house to watch a few games. Makes me feel somewhat normal. Go Stonewall Go!!!!
Thursday, January 6, 2011
Happy New Year!!!
Happy New Year to you all!
I hope everyone truly enjoyed the holidays and spending time with your loved ones. We had a very nice Christmas and yes I did find my Christmas Spirit in time. Part of this Christmas spirit comes with spending time with the ones we love. I realized over Christmas that this is what makes Christmas so special. We get to see our family and friends who we only spend time with on very special occasions. The kids were so excited and overjoyed Christmas morning. Everything was just what they always wanted - it didn't matter what it was!
A new year - a fresh start! I feel in ways like this new year marks a new beginning of this journey. We can scrap everything that we didn't like about last year and make new wishes for this one. The thought of this has re-energized me and I have done alot of thinking about how I want to handle what's coming up in this next year. Oh and by the way for the first time since I can remember this does not involve weight loss. My New Years resolution for years has always involved my weight. If I just lost those 10 or 15 pounds life would be everything that I always dreamed it would be - perfect. Why do we do this to ourselves? This past year has finally made me see that this idea is BS and so there is no weight loss resolution for me this year. I just want to be healthy and happy. Not too much to ask right?
The biggest thing I would love to happen this year is some sort of acceptance of things as they are. It is starting to sink in that this is now my life. Cancer will now forever be a part of it. I wish that I could say that once I'm finished the Interferon life can go back to normal but this is not realistic. I am forever changed. My life is now forever changed. They will always be looking, scanning, checking. I will always be waiting.... I will always believe that every result will be a good one but try to be ready in case it isn't. I've now come to the understanding that it is impossible to prepare yourself to hear that you have cancer....again. It never gets any easier, in fact, I think it just gets harder each time. When I reflect over this past year I see the healing that has already taken place in my life. Not just the physical healing (though that has been amazing to watch) but emotionally too. I can only hope that this continues through this next year.
So for now of course life is full of waiting. I have a scan scheduled for tomorrow (chest, abdomen and pelvis). I have my biopsy of the thyroid coming up on the 17th and we'll worry about the rest later. One step at a time... I'm actually looking forward to tomorrow (I know weird hey?) Jeff and I will have many hours to just be together while we wait for the dye to do its job and show that there are no tumours and I am disease free. This is how I am able to get through all these tests and scans is enjoying this time that I get with my family. I am so fortunate to never be alone and to have all the support. I NEVER take this for granted.
I hope everyone truly enjoyed the holidays and spending time with your loved ones. We had a very nice Christmas and yes I did find my Christmas Spirit in time. Part of this Christmas spirit comes with spending time with the ones we love. I realized over Christmas that this is what makes Christmas so special. We get to see our family and friends who we only spend time with on very special occasions. The kids were so excited and overjoyed Christmas morning. Everything was just what they always wanted - it didn't matter what it was!
A new year - a fresh start! I feel in ways like this new year marks a new beginning of this journey. We can scrap everything that we didn't like about last year and make new wishes for this one. The thought of this has re-energized me and I have done alot of thinking about how I want to handle what's coming up in this next year. Oh and by the way for the first time since I can remember this does not involve weight loss. My New Years resolution for years has always involved my weight. If I just lost those 10 or 15 pounds life would be everything that I always dreamed it would be - perfect. Why do we do this to ourselves? This past year has finally made me see that this idea is BS and so there is no weight loss resolution for me this year. I just want to be healthy and happy. Not too much to ask right?
The biggest thing I would love to happen this year is some sort of acceptance of things as they are. It is starting to sink in that this is now my life. Cancer will now forever be a part of it. I wish that I could say that once I'm finished the Interferon life can go back to normal but this is not realistic. I am forever changed. My life is now forever changed. They will always be looking, scanning, checking. I will always be waiting.... I will always believe that every result will be a good one but try to be ready in case it isn't. I've now come to the understanding that it is impossible to prepare yourself to hear that you have cancer....again. It never gets any easier, in fact, I think it just gets harder each time. When I reflect over this past year I see the healing that has already taken place in my life. Not just the physical healing (though that has been amazing to watch) but emotionally too. I can only hope that this continues through this next year.
So for now of course life is full of waiting. I have a scan scheduled for tomorrow (chest, abdomen and pelvis). I have my biopsy of the thyroid coming up on the 17th and we'll worry about the rest later. One step at a time... I'm actually looking forward to tomorrow (I know weird hey?) Jeff and I will have many hours to just be together while we wait for the dye to do its job and show that there are no tumours and I am disease free. This is how I am able to get through all these tests and scans is enjoying this time that I get with my family. I am so fortunate to never be alone and to have all the support. I NEVER take this for granted.
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