It has been quite some time since my last blog post and there are two reasons for that:
1. I’ve been busy
2. I’m tired
That’s honestly all the reasons I have. I’ve been busy with finishing up doctor appointments – attending to my last few Herceptin treatments, seeing the doctor for a variety of small things that wrap up this whole cancer treatment process. I’ve also been busy with work – even working only 70% is a lot for me to handle some days. And finally, I’ve been busy trying to get back to being active, trying to get into some sort of shape, get my shoulder strong again and honestly trying to just be ‘normal’.
To also be fair, there hasn’t been a lot to write about – and even when there was, the thought of sitting down to write something makes me tired. My recovery time for pretty much everything is still lengthened due to what my body went through. Work days can make me tired. A long walk can make me tired. Sitting and having a conversation for too long can make me tired. And it’s not the kind of tired where you have a cup of coffee and get on with things. This type of tired is debilitating – and all you can think of is how quickly you can get home and lie down.
However, for the most part, things are going awesome. Yes, AWESOME. In two short days I will have my ‘replacement’ surgery, where the plastic surgeon will exchange my tissue expander for a permanent implant. After that, I will be so close to being ‘done’. There are two small procedures left (one where they build me a new nipple and one where they tattoo around it to make the appearance of a proper nipple) and I do have to take Tamoxifin every day for 5 years, but c’mon – small potatoes compared to the other major things I have had to do this past year and a half.
Am I excited? Heck YES. I will no longer be lopsided. I will be able to wear a variety of clothes that I currently cannot. My shoulder will have less pressure on it as a result of where the implant will sit (in the ‘proper’ area, unlike now where it sits up high to expand the tissues to have enough room for the permanent implant). My port will be removed and I will no longer have the three dotted bump on the right side of my chest. I can look in the mirror and hopefully see someone just a little bit different, instead of the unusual person who has been staring back at me for the past 16 months.
Am I nervous? Not really. I realize there is a risk with any surgery, but my Plastic Surgeon is so great and I am 100% confident in her abilities. The only thing that weighs a little on my mind, and by a little, I’m talking like 2%, is that I will have to take a hiatus from activity again.
I recently started a run clinic for Survivors again. I joined a stand up paddle board fitness class. I started doing some yoga and pilates classes. I have been playing masters soccer. And due to the amazing Okanagan weather, I’ve been swimming in the lake. And I love it. All of it. I’m crap at it – out of shape, inflexible and finding activities really difficult. But I still love it. There is something to be said for appreciating your abilities, no matter what they have turned into, and purely enjoying sport because you love it – even if you are not that good anymore.
In regards to a health update:
Herceptin – I completed my treatments on July 17th. The Oncologist Doc said that my last echo of my heart showed a slight change in my heart function, but it was so minute that it could have easily been the technician who read the results or some other small details – the doc said it was not statistically significant and we won’t worry about it.
Fatigue – my fatigue is quite common and the docs have said it will take at least a year to return to a place where I don’t feel tired all the time. I was quite happy to hear that news – not because it would take so long, but because I would now have something to tell people who ask “Still???” when I say I am tired. I really want to yell at them or stare at them in disbelief – do you HONESTLY expect me to be ‘normal’ after less than 6 months of having my body poisoned for 6 months, cut open, and burned for an additional 6 weeks? But it makes me realize how oblivious people are when it comes to health. Do you think that after quitting smoking for one day, someone’s lungs will go back to normal? Do you think that immediately after a knee surgery, someone will run the next day? Of course not!
Cancer treatment is the no different – you do something awful to your body and it is going to take some time to get back to ‘normal’ – if it ever gets there. And that’s just something you have to accept – yes it sucks, but that’s how it is. Anyways, now when people say “STILL???” when I say that I am tired, I will politely smile and say, “yup, the docs figure it will take at least 18 months for me to feel okay again” – hey, why not buy myself a little more time from being judged for not bouncing right back ;)
Appearance – my hair has started to come in – almost enough that I can go without a wig. It’s not quite at the stage where I can go without a hat, but hey, it’s close! I’m trying to embrace the short hair-do – it has been a very very very long time since I had short hair. But the past few days I have been trying to not wear my wig, embrace the short hair and act like it’s just a normal haircut for me.
Surgery – the plastic surgeon will do the ‘exchange’ on Wednesday. She will also remove some fat from my abdomen (in a syringe) and the spin it in a centrifuge, then re-inject it into my chest to smooth out any big dents from the surgery. She will also remove my port-a-cath which I am very pleased about – plastic surgeons make such pretty scars!
Next steps – I had a mammogram on Friday on my right chest. All looked clear according to the technician who conducted the exam. I will have to do a mammogram on that side once a year now for my lifetime. I have a follow up appointment with my oncologist in early September and she will likely review my files and then release me from the care of the BC Cancer Agency and send me back to my family doctor. My family doc will then conduct a once a year exam to ensure things are all good. So basically, every 6 months I’ll be seeing some type of doctor or technician as routine follow up.
And I think that about wraps up everything. I have had an unreal support system and I cannot thank them enough. You know who you are and I will forever be indebted to you for helping me walk forward when my legs just wanted to buckle.
Now, I must go pack so I can leave tomorrow and prepare for Wednesday. Thank you again for allowing me to tell my news this way and to be the ears I needed. xo
Monday, 6 August 2012
Wednesday, 2 May 2012
Day 365 in Kelowna
Today marks 366 days of being back in Kelowna – tomorrow at noon will mark a full calendar year of me being home. Parts of me are astonished to think it has been that short – feels like the start of all this health stuff happened so long ago.
But parts of me feel like it was yesterday, waking up to catch my 6am flight home, feeling sad and frustrated that I had to leave SF, but mostly a just nervous as to what would happen next. I mean, I knew what would happen next – all the scenarios of what could happen were there, but there was no order, no sense to be made of it, and some serious disbelief that this was all happening.
Many times throughout this year I have felt like I am just going through the motions – following orders as best as I can, trying to figure out how to stay positive, feel okay, and how on earth to navigate this disease and its treatment.
Last night, Cayley and I went to watch the Hunger Games movie. It awoke some feelings in me that I wasn’t expecting. Maybe I had a hard time describing how I felt before, or maybe just seeing a scene portrayed on the big screen done so well just really captured how I felt at times during this past year, that I couldn’t help but be emotionally stirred by it.
Let me explain – now, I won’t ruin the movie for you, but for those who have read the book or know the premise of the movie will understand – those who don’t know, well I’ll try and describe it the best I can without giving it away.
The main character in the movie is a girl named Katniss. She is chosen to play in the “Hunger Games” where she must fight for her life in a basic reality show death match with other kids her age - 24 kids go in, 1 comes out. So not to ruin anything further, I’ll stop with the background story there. But the actress who portrayed Katniss did such a good job of one scene in particular that it stuck with me all night and all throughout today.
Right before Katniss is launched into the games arena she meets one of her handlers whom she has grown close to. You hear the announcer start the countdown to the games – 60 seconds. Katniss looks at her friend and starts to shake. She tries really hard to stay strong, but she is close to tears. You can see her looking around the room, almost as if for a way out of this fate. Her friend gives her a hug, gives her his vote of confidence and pulls away. Katniss is left on her own to enter the arena – she tries to pull it together, to not cry, and to put one foot in front of the other, knowing that she is entering a place that she might not make it back from.
Talk about stirring something in me. So often this past year I felt that way – trying to hold things together and shed as few tears as possible – but not ever really being able to control my emotions fully. Knowing what I had to do, what I was about to go through, but at the same time looking for any way out I could think of. Trying to turn off all emotion and instead turn to logic and reason to just push myself through things that my body and mind were screaming at me to stop doing.
I’m not going to pretend I’m as strong minded or willed as the character in this story – that girl has some serious guts! But I do know now how it can look from the outside to be going through something you don’t want to do, but gathering the courage to push yourself to do it anyways. I thought of this a lot today and how people might think that this is a sign that people are coping okay, or that things are going just fine – when maybe they are a lot harder than they want to let on. I’m not just referring to people going through cancer treatment, but people going through anything really difficult in general. It has definitely given me an appreciation for the strength that many people I know have shown in a variety of difficult life situations this past year.
Anyways, just some small ramblings from me today. I’m heading out of town for work next week and despite a bit of a crazy schedule, I am really looking forward to doing some work on the road with an amazing team of people.
But parts of me feel like it was yesterday, waking up to catch my 6am flight home, feeling sad and frustrated that I had to leave SF, but mostly a just nervous as to what would happen next. I mean, I knew what would happen next – all the scenarios of what could happen were there, but there was no order, no sense to be made of it, and some serious disbelief that this was all happening.
Many times throughout this year I have felt like I am just going through the motions – following orders as best as I can, trying to figure out how to stay positive, feel okay, and how on earth to navigate this disease and its treatment.
Last night, Cayley and I went to watch the Hunger Games movie. It awoke some feelings in me that I wasn’t expecting. Maybe I had a hard time describing how I felt before, or maybe just seeing a scene portrayed on the big screen done so well just really captured how I felt at times during this past year, that I couldn’t help but be emotionally stirred by it.
Let me explain – now, I won’t ruin the movie for you, but for those who have read the book or know the premise of the movie will understand – those who don’t know, well I’ll try and describe it the best I can without giving it away.
The main character in the movie is a girl named Katniss. She is chosen to play in the “Hunger Games” where she must fight for her life in a basic reality show death match with other kids her age - 24 kids go in, 1 comes out. So not to ruin anything further, I’ll stop with the background story there. But the actress who portrayed Katniss did such a good job of one scene in particular that it stuck with me all night and all throughout today.
Right before Katniss is launched into the games arena she meets one of her handlers whom she has grown close to. You hear the announcer start the countdown to the games – 60 seconds. Katniss looks at her friend and starts to shake. She tries really hard to stay strong, but she is close to tears. You can see her looking around the room, almost as if for a way out of this fate. Her friend gives her a hug, gives her his vote of confidence and pulls away. Katniss is left on her own to enter the arena – she tries to pull it together, to not cry, and to put one foot in front of the other, knowing that she is entering a place that she might not make it back from.
Talk about stirring something in me. So often this past year I felt that way – trying to hold things together and shed as few tears as possible – but not ever really being able to control my emotions fully. Knowing what I had to do, what I was about to go through, but at the same time looking for any way out I could think of. Trying to turn off all emotion and instead turn to logic and reason to just push myself through things that my body and mind were screaming at me to stop doing.
I’m not going to pretend I’m as strong minded or willed as the character in this story – that girl has some serious guts! But I do know now how it can look from the outside to be going through something you don’t want to do, but gathering the courage to push yourself to do it anyways. I thought of this a lot today and how people might think that this is a sign that people are coping okay, or that things are going just fine – when maybe they are a lot harder than they want to let on. I’m not just referring to people going through cancer treatment, but people going through anything really difficult in general. It has definitely given me an appreciation for the strength that many people I know have shown in a variety of difficult life situations this past year.
Anyways, just some small ramblings from me today. I’m heading out of town for work next week and despite a bit of a crazy schedule, I am really looking forward to doing some work on the road with an amazing team of people.
Friday, 27 April 2012
Update – almost a year later
I’ve been called out on facebook, via email, and in person on how I haven’t updated my blog in a long time – so while I have a bit of time this morning, I thought I should give a bit of an update as to where things sit with me.
First, sorry for the delay! I have been busier, and as a result more tired, than I would have liked this past month. For starters, we moved! Yes exciting, but for me it was super stressful as well. It is great living with Cayley and in the downtown area of Kelowna, but it was hard for me to handle the stress of the big move.
The other area of my life that has gotten quite busy is work. I accepted a 70% of full time job at my company to be the Marketing Manager. It is a great organization and I’m really happy to be there – at the moment it is a really busy time so I am having a hard time keeping it to 70%!
On top of all that, I still have many doctors appointments and follow-up visits. Last week I had 2 doc visits, this week I had 3. So I actually have a bit of a health update:
Radiation Oncologist – says things look good from his perspective, I’m healing up nicely and he does not need to see me again.
Medical Oncologist – says my heart has been handling the Herceptin well – no changes since I started which is great. Said that we will continue with the last 5 Herceptin treatments which will last me to mid-July. Also said it is time to start Tamoxifin – this is a pill-form of a drug I will have to take every day for the next 5 years. Yes, FIVE years. When she told me this, it is not like I didn’t expect it – not like I didn’t know it was coming at some point – but it still overwhelmed me and immediately all I could think of was “I don’t want to do this”.
Of course, I didn’t say that. I took the prescription and got it filled and started taking it that night. So far, no real troubles and hopefully it stays that way.
The Doc also said that I will have to have follow ups for the next little while, but not to think about that for now.
Plastic Surgeon – was happy with how things were healing up for me. We made a plan to get the ‘exchange’ done – where I will have day surgery to replace my temporary implant with a permanent one. This will likely be in mid-summer. If the timing works out, she might even be able to take out my port-a-cath at the same time.
That’s about all from the medical side of things. I’m still really out of shape but trying hard to get more exercise in. My body doesn’t respond like it used to, so I am feeling very frustrated at the lack of progress. But I am trying and hoping to push myself a little harder to get in shape faster.
On the mental side of things – well, I’ve become a bit of a ‘worry-wart’. I had heard stories of people going through a cancer diagnosis and subsequent treatment and coming out on the other side with no cares in the world. All the small stuff didn’t seem to matter anymore, they were carefree, and really happy about pretty much everything.
Not me. I have started to worry about the silliest and smallest of things. Things that will likely never happen, but I still worry. Situations that will likely never occur, but I find myself stressing over them anyways. I automatically get nervous about something new. I don’t want to be like this and I asked the psychologist if this is a normal reaction. She said that many people feel this way after treatment and that self-care is the best thing I can do right now. That means lots of rest, lots of exercise, lots of doing things to ease my mind.
As the month of April has gone by, I feel like I’m getting better at this ‘self-care’ thing. I’m not worrying as much, I’m trying to get lots of sleep, but I still often crash with exhaustion and headaches. I’m getting there :)
Almost a year has gone by since I have been home and a lot has changed. I am not where I thought I would be at this time, but I can’t help but love where I am at right now. I miss SF and my friends there and really wish we were closer so I could see them more. I wish I could have as much energy as I did before to squish everyone and everything into my day – but for right now, I will have to settle for doing the best I can with the energy and time I do have.
So that is a bit of an update for now. I don’t imagine there will be much to write about for the next little while – but if there is, I will promise to be better about writing! For now I will try my best to get and stay as healthy as I can so I can hang out with all of you again soon!
First, sorry for the delay! I have been busier, and as a result more tired, than I would have liked this past month. For starters, we moved! Yes exciting, but for me it was super stressful as well. It is great living with Cayley and in the downtown area of Kelowna, but it was hard for me to handle the stress of the big move.
The other area of my life that has gotten quite busy is work. I accepted a 70% of full time job at my company to be the Marketing Manager. It is a great organization and I’m really happy to be there – at the moment it is a really busy time so I am having a hard time keeping it to 70%!
On top of all that, I still have many doctors appointments and follow-up visits. Last week I had 2 doc visits, this week I had 3. So I actually have a bit of a health update:
Radiation Oncologist – says things look good from his perspective, I’m healing up nicely and he does not need to see me again.
Medical Oncologist – says my heart has been handling the Herceptin well – no changes since I started which is great. Said that we will continue with the last 5 Herceptin treatments which will last me to mid-July. Also said it is time to start Tamoxifin – this is a pill-form of a drug I will have to take every day for the next 5 years. Yes, FIVE years. When she told me this, it is not like I didn’t expect it – not like I didn’t know it was coming at some point – but it still overwhelmed me and immediately all I could think of was “I don’t want to do this”.
Of course, I didn’t say that. I took the prescription and got it filled and started taking it that night. So far, no real troubles and hopefully it stays that way.
The Doc also said that I will have to have follow ups for the next little while, but not to think about that for now.
Plastic Surgeon – was happy with how things were healing up for me. We made a plan to get the ‘exchange’ done – where I will have day surgery to replace my temporary implant with a permanent one. This will likely be in mid-summer. If the timing works out, she might even be able to take out my port-a-cath at the same time.
That’s about all from the medical side of things. I’m still really out of shape but trying hard to get more exercise in. My body doesn’t respond like it used to, so I am feeling very frustrated at the lack of progress. But I am trying and hoping to push myself a little harder to get in shape faster.
On the mental side of things – well, I’ve become a bit of a ‘worry-wart’. I had heard stories of people going through a cancer diagnosis and subsequent treatment and coming out on the other side with no cares in the world. All the small stuff didn’t seem to matter anymore, they were carefree, and really happy about pretty much everything.
Not me. I have started to worry about the silliest and smallest of things. Things that will likely never happen, but I still worry. Situations that will likely never occur, but I find myself stressing over them anyways. I automatically get nervous about something new. I don’t want to be like this and I asked the psychologist if this is a normal reaction. She said that many people feel this way after treatment and that self-care is the best thing I can do right now. That means lots of rest, lots of exercise, lots of doing things to ease my mind.
As the month of April has gone by, I feel like I’m getting better at this ‘self-care’ thing. I’m not worrying as much, I’m trying to get lots of sleep, but I still often crash with exhaustion and headaches. I’m getting there :)
Almost a year has gone by since I have been home and a lot has changed. I am not where I thought I would be at this time, but I can’t help but love where I am at right now. I miss SF and my friends there and really wish we were closer so I could see them more. I wish I could have as much energy as I did before to squish everyone and everything into my day – but for right now, I will have to settle for doing the best I can with the energy and time I do have.
So that is a bit of an update for now. I don’t imagine there will be much to write about for the next little while – but if there is, I will promise to be better about writing! For now I will try my best to get and stay as healthy as I can so I can hang out with all of you again soon!
Friday, 16 March 2012
Surprise!
It has taken me almost a week to write this post and it is not because it hasn’t constantly been on my mind. It is simply because I am still having a hard time believing that something so great could have just occurred.
Simply put, I was thrown a huge surprise party on Saturday by my friends and family to celebrate being done the major portion of my cancer treatment. But it was not ‘simple’ at all.
Saturday came around and Cayley and I spent some time packing up our houses. We were planning to go to the hockey game that night with some friends. My good friend could not use her tickets, so we were to go pick them up from her ‘work function’ at the yacht club that evening just before the game started.
Cayley and I had been getting a little grumpy with one another during the day – moving is not the most fun for me. I was a bit stressed, nervous and just generally overwhelmed by the amount of work to do in the short time frame we had.
I was looking forward to a night out with two friends who we hadn’t seen in a while. I told Cayley I didn’t want to be late but despite my best efforts at getting him moving, he was taking his sweet time. I was getting so angry with him that he was making us late but a few other things were causing us not to rush as well. I finally gave in to the fact that I wouldn’t get to see the puck drop and tried to get the chip off my shoulder – “I told you parking would be a nightmare” ran through my head many times, but I managed to refrain from being a jerk about it…for the most part.
To make a long story short, we went to get the tickets from my friend and SURPRISE everyone who was there was there to celebrate! I was shocked, completely surprised and was so confused as to what was going on. I looked to Cayley and couldn’t understand what was happening. I didn’t realize it until I saw the photos, but my hand instinctively grabbed his. He leaned in with a big smile on his face and whispered “this is for you” and I just looked at him and asked “but why? I am so confused”.
I stared at the sea of faces in front of me – people from town, people from out of town, people from my present and people from my past. I could not believe how many people were in attendance! I was stunned. Friends from Vancouver, Edmonton, Calgary, Vernon, Rossland, Osoyoos were there. My brother came up from Revelstoke. I was so stunned and just kept staring at people like it was a dream.
Next thing I know, my brother is giving me a huge hug and my other friend handed me a tissue. The sheer volume of love and care I felt in the room was enough to overwhelm me to tears. I saw my one friend who I was supposed to pick up tickets from and she had this BIG grin on her face and I knew right away she was the magician behind this big surprise. There is this really great photo of her giving me a hug and I can’t help but feel the love I have for her pouring through that photo.
It took me a good hour and a bit to stop feeling overwhelmed and excited. I had such a hard time believing all these people were here for me! And I couldn’t figure out what I had done to deserve such an amazing surprise.
People came and went throughout the night and I got an opportunity to catch up with most of them. There was a great cake that my friend the chef made – see the photo. There was an amazing sign that read “only Aidan Cole could make a year of fighting cancer look this good” with a bunch of nice photos of me and friends this past year.
There was a part of the night where my friend presented me with a card and a gift to use on our upcoming trip to Portland. She said some really nice words and tears came close once again. I was so humbled and overwhelmed that when it came to my turn to say something I was stumped. How on earth do you put all that emotion and love and gratitude I felt for those people into words? Even me, who we all know, loves to talk, was speechless. The only thing I could think of to say was “Thank you”.
I just couldn’t believe it. I woke up on Sunday and asked Cayley “did that just happen?” and he laughed and said yes. I replied with “but why? I didn’t do anything” and he replied with “oh sweetheart, because we all love you silly”.
I still cannot believe how lucky I am to have such amazing people in my life. I get teary just thinking about how many people were there that night, how many sent well wishes and thoughts. And I truly feel like it wasn’t just a celebration for me, but a testament to the amazing love, care and incredible help these people have been throughout this past year.
And again, all I can think of to say is Thank You. Thank you. Thank you. xo
Simply put, I was thrown a huge surprise party on Saturday by my friends and family to celebrate being done the major portion of my cancer treatment. But it was not ‘simple’ at all.
Saturday came around and Cayley and I spent some time packing up our houses. We were planning to go to the hockey game that night with some friends. My good friend could not use her tickets, so we were to go pick them up from her ‘work function’ at the yacht club that evening just before the game started.
Cayley and I had been getting a little grumpy with one another during the day – moving is not the most fun for me. I was a bit stressed, nervous and just generally overwhelmed by the amount of work to do in the short time frame we had.
I was looking forward to a night out with two friends who we hadn’t seen in a while. I told Cayley I didn’t want to be late but despite my best efforts at getting him moving, he was taking his sweet time. I was getting so angry with him that he was making us late but a few other things were causing us not to rush as well. I finally gave in to the fact that I wouldn’t get to see the puck drop and tried to get the chip off my shoulder – “I told you parking would be a nightmare” ran through my head many times, but I managed to refrain from being a jerk about it…for the most part.
To make a long story short, we went to get the tickets from my friend and SURPRISE everyone who was there was there to celebrate! I was shocked, completely surprised and was so confused as to what was going on. I looked to Cayley and couldn’t understand what was happening. I didn’t realize it until I saw the photos, but my hand instinctively grabbed his. He leaned in with a big smile on his face and whispered “this is for you” and I just looked at him and asked “but why? I am so confused”.
I stared at the sea of faces in front of me – people from town, people from out of town, people from my present and people from my past. I could not believe how many people were in attendance! I was stunned. Friends from Vancouver, Edmonton, Calgary, Vernon, Rossland, Osoyoos were there. My brother came up from Revelstoke. I was so stunned and just kept staring at people like it was a dream.
Next thing I know, my brother is giving me a huge hug and my other friend handed me a tissue. The sheer volume of love and care I felt in the room was enough to overwhelm me to tears. I saw my one friend who I was supposed to pick up tickets from and she had this BIG grin on her face and I knew right away she was the magician behind this big surprise. There is this really great photo of her giving me a hug and I can’t help but feel the love I have for her pouring through that photo.
It took me a good hour and a bit to stop feeling overwhelmed and excited. I had such a hard time believing all these people were here for me! And I couldn’t figure out what I had done to deserve such an amazing surprise.
People came and went throughout the night and I got an opportunity to catch up with most of them. There was a great cake that my friend the chef made – see the photo. There was an amazing sign that read “only Aidan Cole could make a year of fighting cancer look this good” with a bunch of nice photos of me and friends this past year.
There was a part of the night where my friend presented me with a card and a gift to use on our upcoming trip to Portland. She said some really nice words and tears came close once again. I was so humbled and overwhelmed that when it came to my turn to say something I was stumped. How on earth do you put all that emotion and love and gratitude I felt for those people into words? Even me, who we all know, loves to talk, was speechless. The only thing I could think of to say was “Thank you”.
I just couldn’t believe it. I woke up on Sunday and asked Cayley “did that just happen?” and he laughed and said yes. I replied with “but why? I didn’t do anything” and he replied with “oh sweetheart, because we all love you silly”.
I still cannot believe how lucky I am to have such amazing people in my life. I get teary just thinking about how many people were there that night, how many sent well wishes and thoughts. And I truly feel like it wasn’t just a celebration for me, but a testament to the amazing love, care and incredible help these people have been throughout this past year.
And again, all I can think of to say is Thank You. Thank you. Thank you. xo
Friday, 9 March 2012
Statistics
The other day I was looking at the ‘Stats’ tab on my blog. I was blown away. Over 6,300 page views since I started. Views came in from many different countries. Even last month, when I barely wrote, over 400 page views. 6 today alone and it’s not even 930am yet!
I am incredibly humbled. As you go through something like cancer treatment, you go from being overwhelmed with love and care, to slowly dwindling attention. As people feel that you are ‘better’ or have gotten over major hurdles, they don’t call as much – and trust me, I understand! Life is busy, things must move on.
But with the lack of focus on your health, you can’t help but feel that you ‘should’ be ‘totally fine’. While I feel much much better than I had been, there are some residual effects from the cancer treatment that have not gone away – and might not for a long time.
My hands/arms are still numbish. My left arm/shoulder still hurts a lot and I don’t have as much range of motion as before. My endurance and muscular strength is very minimal – I went for a 45 minute walk the other day and my hips were so achy the next day. It takes more and more time to recover from simple activities. My mind is sharp some moments and completely gone the next. And I’m tired. Really tired.
Cayley stayed at his house last night and I told work I wouldn’t be in until noon so I could just sleep until I felt like it. And what a difference it makes! I woke up at 830am, slowly got out of bed, ate breakfast and now here I am. Feeling pretty good, but wondering if I will crash this afternoon.
I also find it weird that for 33 years I fended for myself quite nicely – okay, maybe more like 15 years but you get the idea. Sure, I had help in a lot of areas of my life, for which I am grateful. And this past year, I’ve had more help than I could have imagined. You would think that when 15 years of being independent vs 1 year of not, the independent self would emerge the clear victor.
But holy cow, do I still rely heavily on people, and miss when I don’t have the help around. Doing the dishes, laundry, and trying to clean up in one evening after a ½ day of work leaves me so exhausted and grumpy. I just can’t do most day-to-day activities like I used to. On my trip to SF, Cayley wasn’t with me and I went through the trip ‘fending’ for myself. Don’t get me wrong, my co-workers are amazing and helped out whenever I asked, but it’s a different feeling asking for help, rather than having Cayley just know that I will be tired soon, or I shouldn’t life certain things etc.
Maybe I need to give myself a little more time to recover fully, but it’s hard not to feel frustrated with the whole process.
Anyways, moving on – literally! Cayley and I have started looking for condos/apartments to rent for our time in Kelowna. So far, things have been really busy but we have seen a lot of places and narrowed it down to a few we’d like. We’ll keep looking, but we are being a bit picky in terms of location and what we want.
With the title of this blog in mind, I felt I should provide a few more statistics as of late:
369 days from the day the lump was first felt
357 days from my first doc’s visit to check it out
.005 or ½% - the chance that someone my age gets breast cancer
11 months since I was told I had cancer
10 months since I have been home and started cancer treatment
5cm of hair that has grown back after leaving due to my first chemo treatment
20lbs gained on chemo
16lbs subsequently lost as soon as I was done chemo
$200 per shot of nuepogen I needed to take while on treatment
$30,000+ the amount I cost the BC health care system for that drug ALONE
8 rounds of chemotherapy
1 surgery with 2 amazing surgeons
400cc of fluid sitting in my tissue expander
28 radiation treatments
23 physiotherapist appointments
10 Herceptin treatments done
7 more to go
10 trips I took this year for fun
8 weddings I attended
3 times I was a bridesmaid
1 time I could not be :(
2x 5km races I ran to support amazing charities
6 soccer games I played – in limited capacity
2 eyes that got opened to the very complex, but incredibly caring, cancer treatment process
1 heart that felt the incredible amounts of love and support from those around me
More than I can count - friends/family who made countless gestures or sent thoughts to make me feel better
1 smile that refused to stay hidden, despite the numerous tears that tried to make it go away :)
And this last statistic makes my heart a bit sad, feel heavy but at the same time determined to do all I can to help:
1 more person I know, who is my age, who just got diagnosed with breast cancer. Dammit.
I am incredibly humbled. As you go through something like cancer treatment, you go from being overwhelmed with love and care, to slowly dwindling attention. As people feel that you are ‘better’ or have gotten over major hurdles, they don’t call as much – and trust me, I understand! Life is busy, things must move on.
But with the lack of focus on your health, you can’t help but feel that you ‘should’ be ‘totally fine’. While I feel much much better than I had been, there are some residual effects from the cancer treatment that have not gone away – and might not for a long time.
My hands/arms are still numbish. My left arm/shoulder still hurts a lot and I don’t have as much range of motion as before. My endurance and muscular strength is very minimal – I went for a 45 minute walk the other day and my hips were so achy the next day. It takes more and more time to recover from simple activities. My mind is sharp some moments and completely gone the next. And I’m tired. Really tired.
Cayley stayed at his house last night and I told work I wouldn’t be in until noon so I could just sleep until I felt like it. And what a difference it makes! I woke up at 830am, slowly got out of bed, ate breakfast and now here I am. Feeling pretty good, but wondering if I will crash this afternoon.
I also find it weird that for 33 years I fended for myself quite nicely – okay, maybe more like 15 years but you get the idea. Sure, I had help in a lot of areas of my life, for which I am grateful. And this past year, I’ve had more help than I could have imagined. You would think that when 15 years of being independent vs 1 year of not, the independent self would emerge the clear victor.
But holy cow, do I still rely heavily on people, and miss when I don’t have the help around. Doing the dishes, laundry, and trying to clean up in one evening after a ½ day of work leaves me so exhausted and grumpy. I just can’t do most day-to-day activities like I used to. On my trip to SF, Cayley wasn’t with me and I went through the trip ‘fending’ for myself. Don’t get me wrong, my co-workers are amazing and helped out whenever I asked, but it’s a different feeling asking for help, rather than having Cayley just know that I will be tired soon, or I shouldn’t life certain things etc.
Maybe I need to give myself a little more time to recover fully, but it’s hard not to feel frustrated with the whole process.
Anyways, moving on – literally! Cayley and I have started looking for condos/apartments to rent for our time in Kelowna. So far, things have been really busy but we have seen a lot of places and narrowed it down to a few we’d like. We’ll keep looking, but we are being a bit picky in terms of location and what we want.
With the title of this blog in mind, I felt I should provide a few more statistics as of late:
369 days from the day the lump was first felt
357 days from my first doc’s visit to check it out
.005 or ½% - the chance that someone my age gets breast cancer
11 months since I was told I had cancer
10 months since I have been home and started cancer treatment
5cm of hair that has grown back after leaving due to my first chemo treatment
20lbs gained on chemo
16lbs subsequently lost as soon as I was done chemo
$200 per shot of nuepogen I needed to take while on treatment
$30,000+ the amount I cost the BC health care system for that drug ALONE
8 rounds of chemotherapy
1 surgery with 2 amazing surgeons
400cc of fluid sitting in my tissue expander
28 radiation treatments
23 physiotherapist appointments
10 Herceptin treatments done
7 more to go
10 trips I took this year for fun
8 weddings I attended
3 times I was a bridesmaid
1 time I could not be :(
2x 5km races I ran to support amazing charities
6 soccer games I played – in limited capacity
2 eyes that got opened to the very complex, but incredibly caring, cancer treatment process
1 heart that felt the incredible amounts of love and support from those around me
More than I can count - friends/family who made countless gestures or sent thoughts to make me feel better
1 smile that refused to stay hidden, despite the numerous tears that tried to make it go away :)
And this last statistic makes my heart a bit sad, feel heavy but at the same time determined to do all I can to help:
1 more person I know, who is my age, who just got diagnosed with breast cancer. Dammit.
Sunday, 4 March 2012
San Francisco
Sometimes I am way too tired to sit at a computer and pour out my feelings on to the screen. And sometimes I feel like I could write and write and have lots of things to talk about. Today is one of those days.
So I will pre-warn this 2nd blog post of the day with this caution - If you are one of those people who likes to jump to the end of a book, find out what happens and then read the story, please do continue on. But if you are one of those people who likes to go through the story, build up the suspense, get emotionally tied to the words and then, at the end, find out what happens, I invite you to read the post before (Decisions, Decisions) before continuing on. I wouldn’t want to spoil the ending for those who like the suspense ;)
My co-worker and I left for San Francisco last Sunday. It was her first time into the city and I was really excited to show her around a bit. My good friend from school was picking us up at the airport and then we were going to hang out and see the city a bit and have some dinner before she headed out of town for work.
I feel like I would bore a lot of people with the details, so I’ll try and keep the highlights of my trip to a minimum. For those of you who like to skip ahead, let me sum it up by saying the trip was great, tiring, sunny, and a lot of fun.
On Monday, we headed down to the Moscone Center to set up for the tradeshow. As things came together in our booth, it felt pretty good to be working and I was excited for the show ahead. After set up, we took a cable car over to Fisherman’s Wharf to have some lunch. After we wandered around, my colleague and I parted ways so she could go shopping and I could go back and see my school.
This was a big test for me – would I feel the need to be back at school? Would my excitement be let down?
As I walked in the doors, the first person I saw was the registrar who I had been talking to about upcoming elective choices. I gave him a huge hug and said hello and he gave me the run down on how things were on campus. He also told me to stop by his office when I was done saying hi to everyone so we could chat about elective choices for May.
I continued upstairs and saw many of the staff in the student services offices. They were all so happy and excited to see me and I was filled with excitement as well. We all gave huge hugs and briefly caught up as to why I was in San Francisco.
Their office is all encased in glass walls, so as I stood there talking to them, I saw other staff members, and former students (and good friends of mine) who were on campus. They all popped in to say hi and give me huge hugs. The smiles all around me just filled me with a joy that is hard to explain. I felt excited, happy and could not stop smiling.
The Dean of the school saw me and popped in to say hi. After a big hug, he asked me the question that I am sure was on everyone else’s mind, but they were just waiting to ask –“so Aidan, will we see you here in a few months for the next module of classes?”
I knew I would have to make a decision at some point. I knew I would have to get off the fence post. I couldn’t avoid this forever – and talking about it with people always made me teary. Maybe making the decision would change that. I figured I would just know once I got to the city, to school and would just allow whatever felt right to be the choice.
With a big smile on my face and solid confidence in my voice I replied “Not this year Dean. But you will see me in May 2013.”
The rest of the trip was great – tiring, but really great. I did some work and got really excited about our company and how I might fit with being there on a more consistent basis. I saw old friends and caught up. It was amazing to see a lot of people and see how post-MBA life was treating them. I didn’t get to see everyone or do everything I wanted to, but it was a great trip filled with lots of fun and smiles.
The trip was also draining – I was exhausted for a lot of yesterday and even a little bit sad. Cayley and I looked at two places to rent yesterday and neither of them were very great. We went out for a bit with friends last night and there wasn’t a lot going on. The reality of my decision was sinking in a bit and I shed a few tears last night. Likely I was just really tired, but part of me knows I was sad about not going back to San Francisco, back to my MBA, back to my ‘old’ life right away.
After a restful night’s sleep, I woke up this morning full of excitement – this next year isn’t exactly how I pictured it, but I still think it’s going to be really great – I get to be around great family and friends, be in a great work environment with a company I am really excited about and I get to find a place to live with a really really great man. Next on the list, heading to Portland, OR for a celebration of being over a few big hurdles/ mini-vacation in a few weekends!
So I will pre-warn this 2nd blog post of the day with this caution - If you are one of those people who likes to jump to the end of a book, find out what happens and then read the story, please do continue on. But if you are one of those people who likes to go through the story, build up the suspense, get emotionally tied to the words and then, at the end, find out what happens, I invite you to read the post before (Decisions, Decisions) before continuing on. I wouldn’t want to spoil the ending for those who like the suspense ;)
My co-worker and I left for San Francisco last Sunday. It was her first time into the city and I was really excited to show her around a bit. My good friend from school was picking us up at the airport and then we were going to hang out and see the city a bit and have some dinner before she headed out of town for work.
I feel like I would bore a lot of people with the details, so I’ll try and keep the highlights of my trip to a minimum. For those of you who like to skip ahead, let me sum it up by saying the trip was great, tiring, sunny, and a lot of fun.
On Monday, we headed down to the Moscone Center to set up for the tradeshow. As things came together in our booth, it felt pretty good to be working and I was excited for the show ahead. After set up, we took a cable car over to Fisherman’s Wharf to have some lunch. After we wandered around, my colleague and I parted ways so she could go shopping and I could go back and see my school.
This was a big test for me – would I feel the need to be back at school? Would my excitement be let down?
As I walked in the doors, the first person I saw was the registrar who I had been talking to about upcoming elective choices. I gave him a huge hug and said hello and he gave me the run down on how things were on campus. He also told me to stop by his office when I was done saying hi to everyone so we could chat about elective choices for May.
I continued upstairs and saw many of the staff in the student services offices. They were all so happy and excited to see me and I was filled with excitement as well. We all gave huge hugs and briefly caught up as to why I was in San Francisco.
Their office is all encased in glass walls, so as I stood there talking to them, I saw other staff members, and former students (and good friends of mine) who were on campus. They all popped in to say hi and give me huge hugs. The smiles all around me just filled me with a joy that is hard to explain. I felt excited, happy and could not stop smiling.
The Dean of the school saw me and popped in to say hi. After a big hug, he asked me the question that I am sure was on everyone else’s mind, but they were just waiting to ask –“so Aidan, will we see you here in a few months for the next module of classes?”
I knew I would have to make a decision at some point. I knew I would have to get off the fence post. I couldn’t avoid this forever – and talking about it with people always made me teary. Maybe making the decision would change that. I figured I would just know once I got to the city, to school and would just allow whatever felt right to be the choice.
With a big smile on my face and solid confidence in my voice I replied “Not this year Dean. But you will see me in May 2013.”
The rest of the trip was great – tiring, but really great. I did some work and got really excited about our company and how I might fit with being there on a more consistent basis. I saw old friends and caught up. It was amazing to see a lot of people and see how post-MBA life was treating them. I didn’t get to see everyone or do everything I wanted to, but it was a great trip filled with lots of fun and smiles.
The trip was also draining – I was exhausted for a lot of yesterday and even a little bit sad. Cayley and I looked at two places to rent yesterday and neither of them were very great. We went out for a bit with friends last night and there wasn’t a lot going on. The reality of my decision was sinking in a bit and I shed a few tears last night. Likely I was just really tired, but part of me knows I was sad about not going back to San Francisco, back to my MBA, back to my ‘old’ life right away.
After a restful night’s sleep, I woke up this morning full of excitement – this next year isn’t exactly how I pictured it, but I still think it’s going to be really great – I get to be around great family and friends, be in a great work environment with a company I am really excited about and I get to find a place to live with a really really great man. Next on the list, heading to Portland, OR for a celebration of being over a few big hurdles/ mini-vacation in a few weekends!
Decisions, Decisions
I headed to San Francisco last week to help out my colleagues at a tradeshow. I was really excited for this trip for a few reasons. Reason #1 – traveling for work is a pretty normal thing for people to do – I have not had much “normal” lately. Reason #2 – I felt the trip back to SF, back to see my friends, back to see my school would solidify in my mind whether or not I should go back to attending classes in May 2012.
Yes, I realize, decisions like this shouldn’t be made completely on a ‘gut’ feel. But I had rationalized myself in every way I could think of and still had conflicting feelings. Cayley and I talked and while we’d both love to be back in SF in a few months, it likely was not the best choice.
Why not, you may ask. Well a few factors come into play. Factor #1 – Herceptin – I need to get a Herceptin IV treatment every three weeks until the end of July. I would need to fly home to do this as it would cost me around $5,000+/treatment to have it administered in the USA.
Factor #2 – Surgery – I will have to get my tissue expander replaced by a permanent implant in the coming months. It is not necessary to do it right away, but again, I’d have to make arrangements to come home and have this done. I also need to have my port removed in day surgery, or go get it flushed out once a month – not an easy task while not at home.
Factor #3 – OPT Visa – when you attend and graduate from school in the USA, you are eligible to apply for an OPT (Optional Practical Training) Visa. This visa does have a few rules, but for the most part, it allows you to find a job, test it out, without your employer having to sponsor you for a USA working visa. If I left school immediately after completing, I would no longer be eligible and the opportunity to apply for the OPT visa would be gone.
Factor #4 – My Mind – my memory is not what it used to be, I have a hard time articulating myself and I struggle to concentrate some of the time. I am competitive with myself and while just going to school, pushing through and being done sounds nice in theory, I’d always be disappointed that I couldn’t do my best – perhaps losing out on graduating with honours because I rushed back.
Also, the psychologist I chatted with posed the question ‘what if you go back, find you can’t do it and have to quit again – do you think you could handle that?’ Knowing myself, the answer is likely no.
While I’d like to believe this is a rational decision, one based on facts, likely outcomes and scenarios, you can’t help but think of the emotional side of things. Staying in Kelowna means one more year until I get done – and does that mean I am just putting it off and won’t ever finish? Will all of my classmates, friends and network in San Francisco be gone from the city by then? Will I have forgotten everything I learned the first 8 months of the program? After staying here, being comfortable in a city I know with people I love for an extra year, will I even want to go back? Am I really just scared?
As people asked me over and over what I was going to do next, I couldn’t help but think of what I should do. Cayley and I talked at length. I chatted with my Dad, other family, and friends as to what I should do. Cayley and I made a decision – but to be honest, in my mind it wasn’t going to be solidified until I went back and felt it.
Yes, I realize, decisions like this shouldn’t be made completely on a ‘gut’ feel. But I had rationalized myself in every way I could think of and still had conflicting feelings. Cayley and I talked and while we’d both love to be back in SF in a few months, it likely was not the best choice.
Why not, you may ask. Well a few factors come into play. Factor #1 – Herceptin – I need to get a Herceptin IV treatment every three weeks until the end of July. I would need to fly home to do this as it would cost me around $5,000+/treatment to have it administered in the USA.
Factor #2 – Surgery – I will have to get my tissue expander replaced by a permanent implant in the coming months. It is not necessary to do it right away, but again, I’d have to make arrangements to come home and have this done. I also need to have my port removed in day surgery, or go get it flushed out once a month – not an easy task while not at home.
Factor #3 – OPT Visa – when you attend and graduate from school in the USA, you are eligible to apply for an OPT (Optional Practical Training) Visa. This visa does have a few rules, but for the most part, it allows you to find a job, test it out, without your employer having to sponsor you for a USA working visa. If I left school immediately after completing, I would no longer be eligible and the opportunity to apply for the OPT visa would be gone.
Factor #4 – My Mind – my memory is not what it used to be, I have a hard time articulating myself and I struggle to concentrate some of the time. I am competitive with myself and while just going to school, pushing through and being done sounds nice in theory, I’d always be disappointed that I couldn’t do my best – perhaps losing out on graduating with honours because I rushed back.
Also, the psychologist I chatted with posed the question ‘what if you go back, find you can’t do it and have to quit again – do you think you could handle that?’ Knowing myself, the answer is likely no.
While I’d like to believe this is a rational decision, one based on facts, likely outcomes and scenarios, you can’t help but think of the emotional side of things. Staying in Kelowna means one more year until I get done – and does that mean I am just putting it off and won’t ever finish? Will all of my classmates, friends and network in San Francisco be gone from the city by then? Will I have forgotten everything I learned the first 8 months of the program? After staying here, being comfortable in a city I know with people I love for an extra year, will I even want to go back? Am I really just scared?
As people asked me over and over what I was going to do next, I couldn’t help but think of what I should do. Cayley and I talked at length. I chatted with my Dad, other family, and friends as to what I should do. Cayley and I made a decision – but to be honest, in my mind it wasn’t going to be solidified until I went back and felt it.
Wednesday, 22 February 2012
And DONE
Last week was a bit of a whirlwind – managing my last few radiation appointments, sprinkled with other doctor visits, made the week seem to fly by and all of a sudden it was Thursday afternoon. My 27th radiation treatment happened at 3pm on Thursday and my 28th, and final, treatment was scheduled for Friday at 9am. This small 18 hour gap between treatments made the end seem that much more in reach.
Friday’s final treatment felt great. I threw my hospital housecoat and gown into the laundry service, never to wear it again. I headed into work feeling full of energy. It was such an amazing day – like your birthday, only filled with a huge sense of relief!
People sent me well-wishes, called, sent flowers – it was fabulous! My work had a surprise celebration for me as well which was totally unexpected and really moved me.
After work I headed for dinner with Dad, Devin, Cayley and my Aunt who was in town. I was feeling great and thought that maybe we’d go out a bit later to celebrate. But as has happened to me continuously since this whole thing started, I got tired…fast. One minute I was thinking of places to go and meet people, the next I was thinking of nothing but my bed.
While the official celebrations didn’t last long, all in all, it was a great weekend filled with a lot of smiles. There were some tears too – maybe some of relief, maybe some of uncertainty, maybe some of stress – I really don’t know where they came from, but they didn’t last long – the feeling of being done was just too much joy!
So what’s next? Well the Doc told me that I should expect to feel the side-effects building for another 10-14 days, at which point they peak and then subside. I don’t need to see the radiation Doc for a check-up until mid-April.
I’ve started working a bit more, and in a fabulous bit of news, work is sending me to San Francisco with two other colleagues to work a tradeshow next week! Part of me is a bit nervous about heading out for such a long period of time, especially without Cayley. But part of me is so excited – excited to go to SF, excited to see some of my friends there, and excited to get back to some sort of ‘normal’ and productive life.
I know I will have to be careful – I still get really tired, really quickly – but my coworkers know that and are prepared for me taking a lot of breaks if needed. So bring on SF! Definitely excited for next week and to see what it holds.
Friday’s final treatment felt great. I threw my hospital housecoat and gown into the laundry service, never to wear it again. I headed into work feeling full of energy. It was such an amazing day – like your birthday, only filled with a huge sense of relief!
People sent me well-wishes, called, sent flowers – it was fabulous! My work had a surprise celebration for me as well which was totally unexpected and really moved me.
After work I headed for dinner with Dad, Devin, Cayley and my Aunt who was in town. I was feeling great and thought that maybe we’d go out a bit later to celebrate. But as has happened to me continuously since this whole thing started, I got tired…fast. One minute I was thinking of places to go and meet people, the next I was thinking of nothing but my bed.
While the official celebrations didn’t last long, all in all, it was a great weekend filled with a lot of smiles. There were some tears too – maybe some of relief, maybe some of uncertainty, maybe some of stress – I really don’t know where they came from, but they didn’t last long – the feeling of being done was just too much joy!
So what’s next? Well the Doc told me that I should expect to feel the side-effects building for another 10-14 days, at which point they peak and then subside. I don’t need to see the radiation Doc for a check-up until mid-April.
I’ve started working a bit more, and in a fabulous bit of news, work is sending me to San Francisco with two other colleagues to work a tradeshow next week! Part of me is a bit nervous about heading out for such a long period of time, especially without Cayley. But part of me is so excited – excited to go to SF, excited to see some of my friends there, and excited to get back to some sort of ‘normal’ and productive life.
I know I will have to be careful – I still get really tired, really quickly – but my coworkers know that and are prepared for me taking a lot of breaks if needed. So bring on SF! Definitely excited for next week and to see what it holds.
Friday, 10 February 2012
One week to go
I wanted to write earlier and announce that I was into the single digits for treatment or other slightly less boring news, but as often happens to me these days, I just can’t find the time, nor energy to write in my blog. It’s not that I am so drained I don’t have energy for anything – but I really do feel that with going to the cancer centre every day, plus trying to work, get errands done, and live a normalish lifestyle, there is not much time for anything else.
Yesterday I had a really bad day, so I decided to take the morning off from everything and write a few thoughts on here. So let me get you up to speed:
I’m down to only 5 treatments left – exactly one week today, at around 930am, I will be done the radiation portion of my treatment plan. I don’t have treatment today as the machine has its scheduled maintenance day, so I get a bit of a long weekend.
How do I feel about being close to the end? For the most part, excellent. No more going to the centre every day, trying to find parking, putting on a gown and waiting for my turn. No more wondering if it will take 15 minutes or an hour to be done my session. All in all, I will be very happy this next part is over.
However, I’d be lying if I said I was completely stoked to be done – there is this small part of me that is a bit concerned.
When you are sick and you have to go to the hospital every day, you take small comfort in the fact that if anything new is wrong, it will be less than 24 hours before you see doctors, nurses, technicians and other experienced staff who have seen many people like you before. A casual mention of “hey, I have this new spot on my neck, is that common?” can instantly put you at ease, or put you into a plan to treat that side effect.
Other times, it’s the professionals who notice something – “Hmmm Aidan, you have a bit of a mark on your skin, let’s just check that out to be sure.” My safety net of many nurses, doctors, technicians, etc checking me out every day will be gone.
In all honesty, it’s not hard to go to the centre or call them and wait to see someone. And I’m 99% happy to be done with radiation. But there is that little 1% of me that wonders if I will be as good as the staff at spotting new/different things going on with me. How careful and observant will I have to be? In going to the centre, every day I feel like I am doing something towards making me healthy – will not going there leave a void? Leave me feeling like I am doing nothing to help my health?
Anyways, these are just some of the questions that float through my mind at times. Don’t get me wrong, I will be happy to be done this part of my treatment – very happy. But it’s hard to not wonder – what’s next?
Yesterday I had a really bad day, so I decided to take the morning off from everything and write a few thoughts on here. So let me get you up to speed:
I’m down to only 5 treatments left – exactly one week today, at around 930am, I will be done the radiation portion of my treatment plan. I don’t have treatment today as the machine has its scheduled maintenance day, so I get a bit of a long weekend.
How do I feel about being close to the end? For the most part, excellent. No more going to the centre every day, trying to find parking, putting on a gown and waiting for my turn. No more wondering if it will take 15 minutes or an hour to be done my session. All in all, I will be very happy this next part is over.
However, I’d be lying if I said I was completely stoked to be done – there is this small part of me that is a bit concerned.
When you are sick and you have to go to the hospital every day, you take small comfort in the fact that if anything new is wrong, it will be less than 24 hours before you see doctors, nurses, technicians and other experienced staff who have seen many people like you before. A casual mention of “hey, I have this new spot on my neck, is that common?” can instantly put you at ease, or put you into a plan to treat that side effect.
Other times, it’s the professionals who notice something – “Hmmm Aidan, you have a bit of a mark on your skin, let’s just check that out to be sure.” My safety net of many nurses, doctors, technicians, etc checking me out every day will be gone.
In all honesty, it’s not hard to go to the centre or call them and wait to see someone. And I’m 99% happy to be done with radiation. But there is that little 1% of me that wonders if I will be as good as the staff at spotting new/different things going on with me. How careful and observant will I have to be? In going to the centre, every day I feel like I am doing something towards making me healthy – will not going there leave a void? Leave me feeling like I am doing nothing to help my health?
Anyways, these are just some of the questions that float through my mind at times. Don’t get me wrong, I will be happy to be done this part of my treatment – very happy. But it’s hard to not wonder – what’s next?
Shingles – not just siding for your house
I developed a small rash on my neck about 10 days ago. My neck was itchy one Monday night so when I went to the cancer centre on Tuesday, I asked about it. I first asked the Radiation technicians if it was from the radiation. Nope – the field of the radiation beam doesn’t go that high on my neck.
Next up was my Herceptin treatment, so I asked the nurses in the chemo room about it. They weren’t sure, so they called in one of the Oncologist Docs. She said it was likely nothing, but was going to check with my main Doc just in case.
Turns out that I might have shingles. After having chicken pox as a kid, the virus lay dormant in my body for the last 20+ years. The Docs get concerned with chemo patients that their immune systems have been compromised and that the virus might rear its ugly head in the adult form of chicken pox, shingles. They don’t want to chance anything, so I’m given an anti-viral medication to take for a week.
I also asked my Radiation Doc what he thought – he wasn’t sure it was shingles, but we better take precautions just in case. The technicians now have to wear yellow gowns and rubber gloves when treating me, to protect other patients. I was told to wash my hands a lot and to watch for any other signs of a rash on other parts of my body.
So I went on my merry way and was diligent about taking my medication, not scratching my neck, and looking for other signs of a rash.
I started to feel itchy in the back of my head, so I took a look and saw a small area of red – definitely not as red or rash-like as the area on my neck, but it was still there. So in between physio and my radiation treatment yesterday, I thought I’d stop in to see the doc/nurse and see what was up.
That started an afternoon of awfulness for me. I was taken to an isolation room and two nurses came to talk to me – one of the regular nurses from the centre and one from infection control. They both wore those yellow gowns and rubber gloves. To say I was nervous/scared was an understatement.
The Doctor came in to see me briefly and told me I could go to my radiation treatment, but to come back afterwards and we’d get it sorted out.
I went down to the radiation room and as I was lying on the table, the infection control nurse came in and told me they needed to put a mask on me to protect other patients. I was lying there, tears streaming down my face, and wondering what was going to happen.
After radiation was done, I went back to the isolation room area – I asked if I could just go home and they told me I couldn’t. I just couldn’t help it, I started crying.
To make a long story shorter, I spent the next 3 hours and 45 minutes in a room by myself. The nurses would come in every once in a while to offer me water or other things but really, I just wanted to leave. I tried really hard to stay positive and keep myself occupied with surfing the internet on my phone. Cayley and another friend kept sending me funny texts to make me laugh.
Around hour 2.5 I was getting really nervous – why did this not seem as serious before? When could I go home? What was happening? Not only that, my phone’s battery was slowly dying. I hadn’t eaten lunch and it was nearing 330pm. I asked Cayley to call the centre and see if they would tell him what was happening with me. He said he’d try and find out.
Next thing I know, there is a knock at the door and in walks Cayley with some water and a muffin. He said he told the staff that if I was contagious, he’d already have been exposed as we made out a lot – he said that made the nurses laugh so they let him come see me. I don’t think I can say enough times how amazing this guy is!
Anyways, I was finally sent home around 445pm with a prescription for a cream for the small area on the back of my head. The infection control nurse had gone for the day by the time the doctor was sending me home, so I didn’t really know what to do. I was scared that I’d exposed other people – including my friend’s 2 year old son and my other friend who is 3 months pregnant. I would feel awful if anything bad happened to them because of me.
As I went to bed last night, I kept wondering ‘is this going to be the rest of my life? Always being sick with something?’ I cried a lot – mostly because I was worried, a bit scared, and a lot tired from siting in a room by myself all afternoon.
This morning I got a phone call from the infection control nurse – turns out they think that the small rash on the back of my head is not shingles, I was/am not contagious, and not to worry. A few different docs will follow up with me to see what is going on back there – but for now, don’t worry, use the prescription cream, and try not to wear anything in the area.
That was a scare I’d like to never repeat. It also got me wondering if I will always be like this – having to see doctors all the time with new items going awry because of what my body has been through. Cayley reassured me that given time, my body will recover, I’ll be healthy like before and a lot of this will be behind me. So I’m going to believe him, and go back to the world where shingles are the things to you put on the side of your house.
Next up was my Herceptin treatment, so I asked the nurses in the chemo room about it. They weren’t sure, so they called in one of the Oncologist Docs. She said it was likely nothing, but was going to check with my main Doc just in case.
Turns out that I might have shingles. After having chicken pox as a kid, the virus lay dormant in my body for the last 20+ years. The Docs get concerned with chemo patients that their immune systems have been compromised and that the virus might rear its ugly head in the adult form of chicken pox, shingles. They don’t want to chance anything, so I’m given an anti-viral medication to take for a week.
I also asked my Radiation Doc what he thought – he wasn’t sure it was shingles, but we better take precautions just in case. The technicians now have to wear yellow gowns and rubber gloves when treating me, to protect other patients. I was told to wash my hands a lot and to watch for any other signs of a rash on other parts of my body.
So I went on my merry way and was diligent about taking my medication, not scratching my neck, and looking for other signs of a rash.
I started to feel itchy in the back of my head, so I took a look and saw a small area of red – definitely not as red or rash-like as the area on my neck, but it was still there. So in between physio and my radiation treatment yesterday, I thought I’d stop in to see the doc/nurse and see what was up.
That started an afternoon of awfulness for me. I was taken to an isolation room and two nurses came to talk to me – one of the regular nurses from the centre and one from infection control. They both wore those yellow gowns and rubber gloves. To say I was nervous/scared was an understatement.
The Doctor came in to see me briefly and told me I could go to my radiation treatment, but to come back afterwards and we’d get it sorted out.
I went down to the radiation room and as I was lying on the table, the infection control nurse came in and told me they needed to put a mask on me to protect other patients. I was lying there, tears streaming down my face, and wondering what was going to happen.
After radiation was done, I went back to the isolation room area – I asked if I could just go home and they told me I couldn’t. I just couldn’t help it, I started crying.
To make a long story shorter, I spent the next 3 hours and 45 minutes in a room by myself. The nurses would come in every once in a while to offer me water or other things but really, I just wanted to leave. I tried really hard to stay positive and keep myself occupied with surfing the internet on my phone. Cayley and another friend kept sending me funny texts to make me laugh.
Around hour 2.5 I was getting really nervous – why did this not seem as serious before? When could I go home? What was happening? Not only that, my phone’s battery was slowly dying. I hadn’t eaten lunch and it was nearing 330pm. I asked Cayley to call the centre and see if they would tell him what was happening with me. He said he’d try and find out.
Next thing I know, there is a knock at the door and in walks Cayley with some water and a muffin. He said he told the staff that if I was contagious, he’d already have been exposed as we made out a lot – he said that made the nurses laugh so they let him come see me. I don’t think I can say enough times how amazing this guy is!
Anyways, I was finally sent home around 445pm with a prescription for a cream for the small area on the back of my head. The infection control nurse had gone for the day by the time the doctor was sending me home, so I didn’t really know what to do. I was scared that I’d exposed other people – including my friend’s 2 year old son and my other friend who is 3 months pregnant. I would feel awful if anything bad happened to them because of me.
As I went to bed last night, I kept wondering ‘is this going to be the rest of my life? Always being sick with something?’ I cried a lot – mostly because I was worried, a bit scared, and a lot tired from siting in a room by myself all afternoon.
This morning I got a phone call from the infection control nurse – turns out they think that the small rash on the back of my head is not shingles, I was/am not contagious, and not to worry. A few different docs will follow up with me to see what is going on back there – but for now, don’t worry, use the prescription cream, and try not to wear anything in the area.
That was a scare I’d like to never repeat. It also got me wondering if I will always be like this – having to see doctors all the time with new items going awry because of what my body has been through. Cayley reassured me that given time, my body will recover, I’ll be healthy like before and a lot of this will be behind me. So I’m going to believe him, and go back to the world where shingles are the things to you put on the side of your house.
Saturday, 28 January 2012
The Half Way Point
Yesterday marked treatment #14, exactly half way through the whole radiation process. I haven’t written in a while because of a few reasons:
#1 – really there is nothing exciting to say – my shoulders hurt, my hands are numb/tingly, we aren’t done the extremely hard puzzle in the waiting room of the treatment centre, etc
#2 – with having to be at the centre every M-F, and trying to balance other things like errands, work, rest, I honestly feel like I have no time to do much of anything.
But I do realize that while maybe to me this has become a really difficult routine, it has also made me a bit withdrawn. I don’t reach out to chat to people as often as I normally do. Some of that has to do with feeling like I have no time, but other times I just feel miserable and the last thing I would want to do is call/email someone and be like “hey, things suck, I’m miserable and that’s all I have to say”. I hate being negative like that. I really try to be positive even when it's extremely difficult to do so.
Radiation has been no picnic. It’s really hard to talk to people about it at times…everyone assumes that because you can’t feel the radiation beam, that it’s “easy” or a “breeze” compared to everything else.
Well it’s not. No, it doesn’t really hurt during the treatment, but my shoulders are in a lot of pain. My skin is starting to get red and itchy. I have to be really careful with lotions and soaps as to not further irritate the area. And I’m tired…I can almost feel when my battery is draining and I feel like a kid’s toy winding down fast due to no energy.
Maybe if I had done radiation first, before my body started hating me for all the chemo, before I had my tissue and muscles and skin altered from surgery, it would be a lot easier. However, this is the way it is for me, and I have to just suck it up and deal with it.
On the positive side of things, the last week of radiation has gone by fairly well. I had to have a new CT scan done last Friday to try and put me in a more comfortable position. The first few treatments were similar and uncomfortable, but the ones on Thursday and Friday were much faster and much better.
With treatment every day, time seems to go by very quickly. On Friday I had an appointment with my medical oncologist, my first in 3 months. The staff in her office are so encouraging – saying I looked really great and not sick any more. They also weighed me – standard procedure – and I was down 16 lbs from my last chemo weigh-in! Woo hoo! This means I’m about 5ish lbs away from ‘normal’ weight.
The Doc is a bit puzzled about the numbness in my hands, so she is going to send me for a nerve conductivity test just to rule out anything strange. She figures it’s a leftover side effect from the chemo but it is a bit weird that it is this late in coming. So I am on a new medication to try and control the pain. Apparently nerve damage can take 1-2 years to repair, so hopefully this medication helps in the meantime.
So at the ½ way point, I’m feeling pretty good about things. 14 treatments left in the next 3 weeks and that does not seem like much time at all. On Tuesday I will also be over the hump for Herceptin treatments as well – 9 down, 8 to go. As I celebrate my birthday I keep thinking that I’m almost done the major treatment stuff… and that just might be the best birthday present yet!
#1 – really there is nothing exciting to say – my shoulders hurt, my hands are numb/tingly, we aren’t done the extremely hard puzzle in the waiting room of the treatment centre, etc
#2 – with having to be at the centre every M-F, and trying to balance other things like errands, work, rest, I honestly feel like I have no time to do much of anything.
But I do realize that while maybe to me this has become a really difficult routine, it has also made me a bit withdrawn. I don’t reach out to chat to people as often as I normally do. Some of that has to do with feeling like I have no time, but other times I just feel miserable and the last thing I would want to do is call/email someone and be like “hey, things suck, I’m miserable and that’s all I have to say”. I hate being negative like that. I really try to be positive even when it's extremely difficult to do so.
Radiation has been no picnic. It’s really hard to talk to people about it at times…everyone assumes that because you can’t feel the radiation beam, that it’s “easy” or a “breeze” compared to everything else.
Well it’s not. No, it doesn’t really hurt during the treatment, but my shoulders are in a lot of pain. My skin is starting to get red and itchy. I have to be really careful with lotions and soaps as to not further irritate the area. And I’m tired…I can almost feel when my battery is draining and I feel like a kid’s toy winding down fast due to no energy.
Maybe if I had done radiation first, before my body started hating me for all the chemo, before I had my tissue and muscles and skin altered from surgery, it would be a lot easier. However, this is the way it is for me, and I have to just suck it up and deal with it.
On the positive side of things, the last week of radiation has gone by fairly well. I had to have a new CT scan done last Friday to try and put me in a more comfortable position. The first few treatments were similar and uncomfortable, but the ones on Thursday and Friday were much faster and much better.
With treatment every day, time seems to go by very quickly. On Friday I had an appointment with my medical oncologist, my first in 3 months. The staff in her office are so encouraging – saying I looked really great and not sick any more. They also weighed me – standard procedure – and I was down 16 lbs from my last chemo weigh-in! Woo hoo! This means I’m about 5ish lbs away from ‘normal’ weight.
The Doc is a bit puzzled about the numbness in my hands, so she is going to send me for a nerve conductivity test just to rule out anything strange. She figures it’s a leftover side effect from the chemo but it is a bit weird that it is this late in coming. So I am on a new medication to try and control the pain. Apparently nerve damage can take 1-2 years to repair, so hopefully this medication helps in the meantime.
So at the ½ way point, I’m feeling pretty good about things. 14 treatments left in the next 3 weeks and that does not seem like much time at all. On Tuesday I will also be over the hump for Herceptin treatments as well – 9 down, 8 to go. As I celebrate my birthday I keep thinking that I’m almost done the major treatment stuff… and that just might be the best birthday present yet!
Monday, 16 January 2012
The First Week
Today marked the first full week of radiation treatment for me - 5 treatments under my belt so far.
On the first day I was given a hospital gown and a hospital housecoat to use during my treatment. I need to be naked from the waist up underneath my gown. I need to get changed in the change rooms at the centre before my set appointment, then wait in the waiting area for my specific machine. There are 5 machines at the cancer centre and are named The Lake, The Hills, The Park, Orchard, and The Beach. I am being treated on the Beach machine at the very end of the hall.
The room that houses the Beach machine is quite large with a medical table in the middle. There is a big machine that hovers around the table – the machine will move around you, but won’t touch you. Each day I go for treatment my settings for my scan will be set out on the table ready for me to lie in there and get placed in the same position each time. There is a cushion that goes under my legs, pressing up against my butt. There is a mold for my head/neck, and two for my left arm – one for the bicep, one for the hand. My left arm needs to be raised up behind my head to expose my side so it can receive treatment.
The first day I walked into the room and started crying. I’m not sure why I was upset – maybe the reality of it all had sunk in. I was able to compose myself and then laid on the table to get ready. The radiation technicians then try to line me up on the table in the exact position I had my CT scan in. My tattoos will help them position me where I need to be lined up.
There were three technicians setting me up and as they moved me around they would tell each other a variety of numbers. Often after hearing the number, another technician would say “I agree”. I guess they have to ensure I am in the correct spot before getting going.
The first day took about 30 minutes of lying on the table. The technicians came in and out of the room a few times to check things out. The lights are dimmed when I first lie on the table and there are green laser lights lining the table – think of the red motion sensor lights you often see that act as security surrounding valuables in the museums in the movies.
Once the technicians leave the room, the lights get turned on and the big machine starts to move around me. The first few days I needed to have x-ray pictures done to make sure I am lined up properly on the machine. Then the radiation starts.
To be honest, I don’t really know when it is happening versus when the machine is just moving and adjusting. Once the technicians come in and tell me it’s over I am able to move again. Otherwise I need to stay as still as I can.
The second day was similar to the first – although I was really uncomfortable while lying on the table and started shedding a few tears. The technicians helped me get as comfortable as I could and tried to speed things along.
Day 3 and 4 were really speedy. The whole treatment time only took about 10-15 minutes. But today was a different story.
I’m not sure if the two day’s rest over the weekend changed anything in my shoulder, or made them ache more, but today’s treatment was very uncomfortable. The technicians had a hard time lining me up properly and kept moving me to try and adjust my position.
As the time ticked by, I laid there and could feel tears brimming. I closed my eyes, hoping to fend them off, but it didn’t really work. I could hear the staff talking about how my one tattoo was almost too small to see and that maybe I should get re-tattooed. One technician asked me if it was okay if they re-did the tattoo after we were done today. I couldn’t answer. I could feel tears spilling out of my eyes and my voice could not make so much as a whisper.
The technicians asked me a few questions and I nodded or shook my head. I managed to eek out that I was trying to stay still and I was really sorry. They got my some tissue and told me I could put my arm down – we’d start again. The staff were really encouraging and trying to be helpful – they know that my shoulders really hurt from the positioning and try to be as quick as possible.
I managed to get the tears under control and said we could proceed – it was really hard to get my lined up and I needed 3 x-rays to get the position correct. The treatment session took an hour and I could see in the waiting room when I left that I had caused a bit of a backup in patients.
After the treatment today I had a check-in appointment with my Radiation Oncologist. The appointment was nothing exciting – but the doctor noticed right away that I seemed subdued and asked me what was wrong. I told him that I was uncomfortable during the treatments and had a few issues with crying. He offered me a few ways to manage the pain but we decided for now to simply up my dose of ibuprofen – I was taking 1 before my treatment, now I am to try taking 3.
As for side-effects, so far I have a small inflammation on one of my scars from the surgery. My shoulders ache a lot and I wake up with my hands/fingers really aching in the mornings. It seems unlikely that that is from the radiation treatments, but I don’t really know for sure. I am told that other side-effects might not show up until 2 weeks after the first treatment.
5 treatments in, with 3 of them consisting of tears. Hopefully I can get that under control for the rest of the sessions. 23 left to go – target completion date: Feb 17.
On the first day I was given a hospital gown and a hospital housecoat to use during my treatment. I need to be naked from the waist up underneath my gown. I need to get changed in the change rooms at the centre before my set appointment, then wait in the waiting area for my specific machine. There are 5 machines at the cancer centre and are named The Lake, The Hills, The Park, Orchard, and The Beach. I am being treated on the Beach machine at the very end of the hall.
The room that houses the Beach machine is quite large with a medical table in the middle. There is a big machine that hovers around the table – the machine will move around you, but won’t touch you. Each day I go for treatment my settings for my scan will be set out on the table ready for me to lie in there and get placed in the same position each time. There is a cushion that goes under my legs, pressing up against my butt. There is a mold for my head/neck, and two for my left arm – one for the bicep, one for the hand. My left arm needs to be raised up behind my head to expose my side so it can receive treatment.
The first day I walked into the room and started crying. I’m not sure why I was upset – maybe the reality of it all had sunk in. I was able to compose myself and then laid on the table to get ready. The radiation technicians then try to line me up on the table in the exact position I had my CT scan in. My tattoos will help them position me where I need to be lined up.
There were three technicians setting me up and as they moved me around they would tell each other a variety of numbers. Often after hearing the number, another technician would say “I agree”. I guess they have to ensure I am in the correct spot before getting going.
The first day took about 30 minutes of lying on the table. The technicians came in and out of the room a few times to check things out. The lights are dimmed when I first lie on the table and there are green laser lights lining the table – think of the red motion sensor lights you often see that act as security surrounding valuables in the museums in the movies.
Once the technicians leave the room, the lights get turned on and the big machine starts to move around me. The first few days I needed to have x-ray pictures done to make sure I am lined up properly on the machine. Then the radiation starts.
To be honest, I don’t really know when it is happening versus when the machine is just moving and adjusting. Once the technicians come in and tell me it’s over I am able to move again. Otherwise I need to stay as still as I can.
The second day was similar to the first – although I was really uncomfortable while lying on the table and started shedding a few tears. The technicians helped me get as comfortable as I could and tried to speed things along.
Day 3 and 4 were really speedy. The whole treatment time only took about 10-15 minutes. But today was a different story.
I’m not sure if the two day’s rest over the weekend changed anything in my shoulder, or made them ache more, but today’s treatment was very uncomfortable. The technicians had a hard time lining me up properly and kept moving me to try and adjust my position.
As the time ticked by, I laid there and could feel tears brimming. I closed my eyes, hoping to fend them off, but it didn’t really work. I could hear the staff talking about how my one tattoo was almost too small to see and that maybe I should get re-tattooed. One technician asked me if it was okay if they re-did the tattoo after we were done today. I couldn’t answer. I could feel tears spilling out of my eyes and my voice could not make so much as a whisper.
The technicians asked me a few questions and I nodded or shook my head. I managed to eek out that I was trying to stay still and I was really sorry. They got my some tissue and told me I could put my arm down – we’d start again. The staff were really encouraging and trying to be helpful – they know that my shoulders really hurt from the positioning and try to be as quick as possible.
I managed to get the tears under control and said we could proceed – it was really hard to get my lined up and I needed 3 x-rays to get the position correct. The treatment session took an hour and I could see in the waiting room when I left that I had caused a bit of a backup in patients.
After the treatment today I had a check-in appointment with my Radiation Oncologist. The appointment was nothing exciting – but the doctor noticed right away that I seemed subdued and asked me what was wrong. I told him that I was uncomfortable during the treatments and had a few issues with crying. He offered me a few ways to manage the pain but we decided for now to simply up my dose of ibuprofen – I was taking 1 before my treatment, now I am to try taking 3.
As for side-effects, so far I have a small inflammation on one of my scars from the surgery. My shoulders ache a lot and I wake up with my hands/fingers really aching in the mornings. It seems unlikely that that is from the radiation treatments, but I don’t really know for sure. I am told that other side-effects might not show up until 2 weeks after the first treatment.
5 treatments in, with 3 of them consisting of tears. Hopefully I can get that under control for the rest of the sessions. 23 left to go – target completion date: Feb 17.
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