Barely Three Weeks to go before "The Ride"

Sorry for no post on Sunday! Memorial Cup was on and my hometown team the Halifax Mooseheads were in it so I was watching that! And they won so it was great!

Well, it is only three weeks away until the "Ride to Conquer Cancer" is upon us. In just a few weeks, (June 15-16) me and almost 4000 others will be riding their bikes from Vancouver to Seattle as a conclusion to this years fund raising event. Training has been going well, and fund raising has gone better than expected (My web page for it! www.conquercancer.ca/goto/eamonnc). When I started out this year I set a goal for the team I was starting (Team Phoenix, team jerseys come tomorrow! So excited!) to raise $20000 for cancer research. We have already passed that mark by $3000 now and I couldn't be prouder of everyone involved (especially Sara! Man she carried a lot of the work!). This event for me gives me personally a lot of satisfaction and pride in helping out raise money to fight back against cancer. It probably is the most satisfying thing I have ever been a part of. 

The ride itself is great fun. Every person in the event who is a cancer survivor has the option of having a yellow flag attached to their bike. I personally like identifying as a survivor and seeing all the others out there too. I feel it can give people a bit of hope that they can still do great things after cancer. I will never forget when I started training during chemo, I could barely go one km on my bike, now I do 240 km over this weekend. I like knowing that things got better.

Me and my yellow flag 2012

One of my favorite parts is at camp at the end of the first day. Not just because I no longer have to peddle any more for that day, and my butt gets a break from the seat, but because we get to hear the total funds raised. Last year, it was $11.2 million, which suffice to say is a huge number. It has gotten larger each year and I can't wait to see what it gets up to this year!

Me at the finish line 2012

I find it hard to write about the ride sometimes. I really enjoy. It was my goal to be able to do it while I was sick, and I love raising the money each year. It is surely something I will continue with for a long time. I do have fears about not being able to do it. I usually have a check up around the same time. I have x-rays next week. It is just a very emotional time for me.I love it. I am scared to lose it (go back to being sick). I know how much it helps people, and I want to continue to help. I know how much it helped me.

Part of me wonders how "selfish" it makes me to do something like this. I know I got started in this because I got sick. I often tell people the biggest make I have made in my life was waiting until I got sick to get involved with something of this magnitude. I often wonder how much I could of done if I had of started earlier in life with events like this. So I always try to encourage to find an event, whatever the good cause and get involved. Helping people not only makes you feel good, but it makes others feel good too, and in some way, that matters more to me. I don't want people to have to go through what I did.

So I will close just by saying thanks to all the readers out there, and I hope in some small way this blog and my writing helps people. I know it helps me, and without it, and events like "The Ride" I wouldn't of met so many wonderful people out there.

Take care!

Eamonn

Last years team, "Riders for Ryders" at camp!

How Much Time do We Spend Waiting?

One of the hardest parts about going through cancer treatment, leading up to it, and for a long time after is all of the waiting a person might do.

We wait for everything. The next scan, the next blood test, the next result, the next pain, the next side effect, the next break down and the next build up. I have waited for the next surgery, the next round of chemo, the side effects that come along, the next day of radiation the next painful and often difficult step, and I waited patiently for it all to be completed.

Personally I know I have a hard time managing the waiting periods. Knowing your life could change in an instance is something any cancer patient or survivor is all too familiar with. I wait patiently until the next check up to hopefully be told everything is okay, and then I get to wait some more before the next one.

If you are anything like me, I feel I have to wait a little longer with things like investing, sometimes work, and family planning. These were things that were very much put on hold when I was sick, and continue in many aspects afterwards as I go through everything that comes after cancer. I used to have a solid plan of when and how I was going to do some of these things, but it becomes a matter of waiting for the right time. When the right time is, that is anybody's guess. Recently, I am waiting on news of an MRI scan and blood work. More waiting.

I find I am becoming better equipped to deal with these waiting periods. I spent a lot of time worrying during these periods, which doesn't help but is sometimes unavoidable. I don't want to spend my life waiting for good news, sometimes paralyzed by it, and then when good news comes, start waiting for the next round of the same.

I have spent too much time waiting, waiting and waiting some more. I hate it. I have worked for a long time to not have to wait anymore. I am confident I will be at a place soon where I can start to take control again and start living life to fullest again. Ironically, I still have to be patient and wait a little longer to fully be there.

Long Weekends and Bike Riding

I consider myself very lucky these days to have long holiday weekends such as this one to do what I want to do.

This weekend so far I have done two bike rides, one 40 km with many hills and a longer on 80 km with less hills (still more than I thought there was going to be...). I have a lot of time to think about a lot of things when on a ride that long.

Todays ride a couple things really went through my head. The ride was a tough one today. The weather was changing, and there was a really bad head wind for a good portion of it. Head winds are very tough when you have not super strong legs like me (still rebuilding from surgery) they can wear you out so quickly. But at the same time, I was out. I was so appreciative of that. 

Many holiday weekends I had when going through cancer treatment involved on of two things. Either being too sick to leave the house and go anywhere, or being sick enough that I was admitted to the hospital and ended up staying there for several days. Both were miserable. Far worse than any pain or annoyance I get when I am out on the road biking.

I am happy to have these weekends. It motivates me more and more with my bike riding. This week, my cycling team passed $20000 raised for cancer research and I couldn't be more thrilled about it (www.conquercancer.ca/goto/eamonnc). I know this will help to bring some of these long weekends back to others, and I hope my fundraising continues to go well to help more people. I think it is amazing that I can get my long weekend back, raise money for cancer research and make a difference in peoples lives all by simply riding my bike.

Trying to Find Balance

One thing that makes life hard for someone (like me) who had cancer (or any other major illness) is how life becomes so uncertain so fast. Young or old, I think this holds true. 

It becomes a constant struggle I find to balance long term and short term goals, and finding a "balance in your life. Many days I have a hard time with this, more so if I am not feeling great. Work can be stressful, I just want to leave some days, other days it is great. I feel to find a good balance you need a consistent life, something which cancer survivors or patients don't really have.

I think for me, I am still hesitant to make a lot of long term goals. Every three to four months I go in to see the doctor again, and I know first hand how fast things can change. This mentality can sometimes make long term planning at work or at home very stressful. In some cases, short term planning becomes stressful too. For example, I am waiting for MRI results currently. I have two conferences I want to go to for work in the next four weeks. I don't know if I can go, but I have to book soon (basically by Friday) before I have my results. If the tests are fine (which I believe they will be) then no problem. If it isn't then I am out a bunch of money without the ability to work for an extended period of time. Problematic.

Day to day, I do alright. I still work hard every day at my job, but some times my mind can wander a bit, and I have to real it back in. I start to think what would I want to do if I had to go back in again. I really feel I haven't done a good job at "living" and doing the things I said I wanted to do after treatment. I went back to work right away, wish I could of taken time off, but rent needs to get paid! I reached some of my main goals, which was very important and certainly don't want to trivialize that. Getting back into decent shape was a big undertaking and I finally feel like I am making progress with that. Still a ways to go but it is getting there. I still am not sure what I want to do for work, this can lead to frustrations a lot of the time. I am under a lot of pressure to do certain things and act a certain way by the world. I haven't been able to find that balance of what I want to do versus what others want, or need me to do. 

I still feel like the world is watching over me and scrutinizing what I do. I wish I could just go away for a few days and be by myself, but I can't really. I need to be at work, and I need to be at home. I am very envious of people who at least get the opportunity to rediscover themselves or take vacation or whatever after treatment is done. I know it doesn't always go perfectly but at least they have an opportunity. I would love to have some time off to readjust and really find what balance I want in my life.

I don't always know if what I am writing makes much sense. I think today might be one of those days.

What a Week this has Been

It has been a tough couple of days. 

I had a surprise check up to get my leg looked at where I had surgery. They doctor poked around a bit and told me that the bump in my leg was probably scar tissue. I was elated.

That elation lasted about a day or two before I started worrying again. That wasn't really much of a test, but I know they wouldn't of told me this otherwise based on my past experiences at the cancer agency. I have an MRI on Monday as my regular check ups go so I will know for sure. Again, tons of stress with each one of these. I am not alone in those types of things.

I have a long layover between my scan and meeting with my oncologist. Longer than ever before. Again added stress. What if they call before hand? What if they don't? Why is there such a long lay over this time? Am I not important anymore? Am I fine? Am I a lost cause? All thoughts that I have.Whether real or not, scan time is stress time.

I get so stressed out around checkups and doctors appointments. Even more so when I start poking around my leg and feeling how lumpy it is. I cannot keep track of them all. It is tough. I always poke my leg until it is hurting or bruised when I find these spots. It sucks, but I can't seem to talk myself out of it. It can wear someone pretty thin.

I worry because I am scared of what a bad test result would mean. No one wants a recurrence. I am cancer free and I want to stay that way. I don't want to have to go back to the chemo ward. I don't want to have more surgery. I don't want to die. When I think about these things, it wears me down to the bone.

I am a cancer survivor. It has effected my life greatly. I don't want it to effect it anymore than it has. It hurt so many people in my family. So many friends have felt the pain of it too.

I honestly feel for everyone who has had to go through this. Patient, family, friends and care givers. It truly is hell on a persons body and soul. I am looking forward for these next few weeks to be passed. Then I can relax again.

Scanxiety, so you are back...

"Scanxiety" is no fun. For those of you who don't really know what it is, it is basically the fear of getting medicals tests (scans) and the potential results to follow.

Almost every person I have talked to who went through cancer gets this before their check ups. You may feel good, or not, but going into these tests it makes things, like life just a bit more difficult then you may want.

For me, particularly, my MRI scans really stress me out. Blood work doesn't bother me so much as I know my blood is still not great (you should see the bruise on my hand from just getting one vial of blood drawn on Monday!). These days, I know I have some scar tissue in my leg, I know it is harder than normal skin, and no matter what people say it "looks like" I really need the MRI results to tell me what is going on.

Every three months or so I get an MRI. I go in, lie in a room on a table, get injected with imaging agents, and wait about 45 minutes for the scan to be done on my leg and hip. The process itself isn't so bad, it is the week leading up to, and in many cases, the week after, waiting for results. This whole process leads to phantom symptoms, and unnecessary worry.

So many thoughts run through your head. I have been told if we don't call right away that is good. No emergency. But my mind will wander to maybe they haven't called because there is a big meeting of all my doctors to find out what treatment I need next. Or maybe, the exact opposite, just a quick look at my scans and Oh Eamonn is fine still goes through my oncologists head, I wonder if he is still going to the gym and then she goes back to work.Waiting waiting and more waiting, I am a natural worrier, always have been, and this makes things just harder is all. To be fair, they have always been great to me, I am not blaming the doctors or anything, it is just a stressful time is all.

So I go in this Monday for my next MRI scan, and of course I am concerned. I was in last week to get some parts of my leg inspected and the doctor didn't seem to concerned. That eased my mind for a day or two, but then I think The MRI is the real test. Even though I know I have some of the best oncologists in the world, and they wouldn't send me away with that message if they thought it was bad, it doesn't always do much to make me feel better.

It is enough sometimes to make you break, or feel very close to it. The joy of a clean scan is one of the greatest feelings in the world I have ever felt. The fear of what bad news would mean...I know what it would mean and I don't want to go back there. No one does. But I will continue to focus on the positive and keep thinking happy thoughts as best I can.

So here I am, having another nervous week or two. Another round of scanxiety. But I am hopeful that it will go as the others since I finished treatment.

A whole lot of unnecessary worry.

Food, How I missed it.

One of the hardest parts about having chemo and feeling gross all the time, is it really effects your ability to eat.

I love food. A good meal is probably one of my favorite things around. The problem with when you get chemo (or radiation around your neck/mouth) is it really effects your ability to eat.

A lot of people assume that this is mostly because of nausea.  And for some people that really is true. I had pretty good nausea meds so it wasn't that bad. Only the day I got chemo and the next were particularly bad. It was all the other side effects that I really didn't know about. 

Chemotherapy targets all parts of your body, and all fast reproducing cells. Many of these live in your mouth, next and intestines. This was probably one of the hardest parts for me. My mouth was in pieces because of chemo. I had a badly blistered mouth, and a badly swollen tongue. Many days this made not only eating, but talking nearly impossible, and extremely painful. Similarly, when I could eat, it was often painful as my body processed it (as you can imagine, not an ideal system). I ended up losing quite a bit of weight (as you do) and eating was a necessary chore.

My taste buds were also heavily effected. Food that I liked, I didn't anymore, and many foods were too "harsh" for my system to be able to handle. I really missed food during this time. One of the worst things was I had to give up coffee. Just couldn't deal with it, and to be honest, coffee is one of my favorite things.

Losing your ability to eat is one of the hardest parts I had during chemo. I wanted to eat. Desperately. But it was physically painful. As I mentioned sometimes so painful that I physically couldn't do it, even with pain killers.

Now those days are behind me. And if my luck holds out, I will never have this problem again. I missed food. I love every meal. I love every smell. I love being able to eat. I eat healthy and I love the process of cooking, and enjoying a meal with friends. I won't ever forget that part of my life. I won't take for granted any meal I eat.

I still can't eat everything. Spicy foods aren't great in particular. But hey, I eat what I can, as with all cancer side effects, I let my body tell me what I can do and what I can't do. At the end of the day, I am happy to be alive, and happy to be doing okay. And I will eat to that.

Checkups, Checkups and more Checkups

It seems like they never end. 

Yesterday I went in to see my oncologist (hence the delayed post) because of some lumpyness in my leg where I had surgery to remove a tumor in 2011. So I sometimes get extra concerned and need to get it checked up on in between checkups.

It is basically impossible to keep track of where all the lumps and bumps are I have found, so I called in Monday, got in yesterday, and was told it is scar tissue. It was the "wrong consistency" to be a lymph node tumor. All great news, but really stressful. Unexpected checkups are the scariest I find. I have had a few now. And they don't extend the time that I need to go back for another checkup. So I end up with an extra one. Not a bad thing, just a stressful process.

I also have a checkup coming up in the next two weeks. Blood work, MRI and visiting with the oncologist again. These check ups I find are slightly less stressful, but I still get concerns every time I go in. So more checkups. And although they are technically only every three months, the tests them selves bring me to the hospital more often, a week early for blood work, two for MRIs. More checkups.

Then, as anyone who has had cancer or taken care of one, this is kind of the standard procedure if you will. I don't live in a hospital anymore, but I certainly do depend on it. It still finds a way to bring concerns I don't want and stress into my life. Checkups can rule your schedule. They are necessary for a long time, I get that and I understand that. I appreciate that checkups are they, but they are stressful. People have told me, each checkup gets easier. I have found the opposite. The more I get through, the further away from treatment I am, and the further my life gets along, the more worried I feel about going back "there". 

Checkups are now a part of my life it seems. It will stay that way for awhile and although it adds a lot of stress it is good to hear when things are going well.