Stephanie and I have had our lives cross paths many times over the last 15+ years and I have gotten to know some of her family over the last couple of years as clients in my salon. I reached out to her in September after seeing on Facebook that her son Aiden had been diagnosed with a medulloblastoma brain tumor. Stephanie, her husband Josh and their 3 children's life have been turned upside down. She has also found some comfort in writing her story and Aiden's journey battling cancer and I have turned to it many times to inspire me through my journey. Her words are so raw and beautiful at the same time. Traveling from Ottawa, Boston and now Toronto her blog reflects what a strong mama she is. Aiden has gone through so much and is a brave, determined warrior who has incredible strength. A couple weeks ago Stephanie posted this amazing video of Aiden and his persistent in regaining his ability to walk again. I watched this video over and over, seeing a 7 year old boy work so hard and how much effort on so many levels he and his family are putting in everyday is so unbelievably humbling. On days where I feel low I turn back to this video, beside the Foo Fighters song (who are my ultimate favorite band of all time) Aiden's spirit shines through and pushes me to be better! Stephanie is a very strong woman who is raising a very strong son and my thoughts and prayers are always with them!
Read about her story here: mamaoutpost.com
One of the first questions I asked my oncologist was "am I going to lose my hair?" I was told with the medications I would be getting it would thin but I probably won't lose it. I was so relieved! As a plan was put into place it was decided that instead of two medications they would be giving me three. It was a very aggressive step but because of my age and the fact that in every other way I am healthy, I could be treated in ways others might not be able to be. This also meant side effects might be more likely. The day before my second chemotherapy treatment I ran my hands through my hair and a considerable amount was wrapped around my fingers. It was such an unsettling feeling. My entire life I have been identified by my hair, I've been called red, ginger, carrot top and always asked how's my temper. I have had long hair for most of my life and it has been such a part of who I am. I just stared at the hair in my hand thinking "oh my god this is really happening!" There are moments when reality hits me that I have cancer, it's not the moments I thought that startle me the most it's the unexpected moments that I am not prepared for. I, at times, important times, am slightly numb. Going to my first chemo treatment I sang to the radio and stared out the window of the car blocking out what I am about to go do. I focus on other things around me that have nothing to do with the doctors appointment I have to go to, push out the overwhelming details of everything going on because it's just too much sometimes if I take it all in (That's why I always take someone with me to appointments). That moment though when I was at home doing normal everyday things and not ready for my hair to, all of a sudden, start falling out is one of the moments that took me off guard.
Now what? Now what is going to happen, is it all just going to come out, will it take a couple days, a week, what do I do about this? This is where my struggles with hair loss began. I have a ton of hair, everyday I would run my fingers through my hair and take out handfuls of it, I would look in the mirror after and still have hair! I made Sydney look for bald spots and even though it felt thinner there were no spots and I still had hair! It literally was making me crazy. I started putting my handfuls of hair in a waste basket beside my bed and could not bring myself to throw it out. I still haven't. My weird thought behind this was what if it doesn't grow back, or comes back a different colour not red anymore, I would still have it and be able to remember. It felt like such a part of me that I just couldn't let it go. I have seen very brave women and men shave their heads and own it but for some reason I just couldn't. I held on to the hope that the thinning would stop and I could still make it look somewhat normal.
Pulling hair out for well over a week at this point. The pile of hair is what I had pulled out that day!
The basket of hair was starting to make the people around me a little concerned that I was not only losing my hair but possibly my marbles. I also thought that if anyone made the comment "oh you lost your hair" I would have a snotty, sarcastic comment back like "No I haven't lost it, I know exactly where it is, it just doesn't happen to be on my head!!" It was very frustrating and I sent out this ranting message to my support group:
"Last but not least my hair!!! Now this has been a month long struggle for me and actually the hardest thing I have had to emotionally deal with. Truth is I have tried to talk myself through the thoughts of being bald and having my hair not define me but the truth is I DO NOT want to lose my hair. There are so many elements to how traumatic and difficult it has been to wrap my mind and emotions around this happening. Also the social implications of being bald. A banner that screams to everyone "hey I have cancer!!!" I stare in the mirror everyday and think is today the day. Do I take control and shave it myself or let it fall out to the point where it just has to go. I can't bring myself to shave it off because it is so important to me that it is still there!! It is literally driving me crazy."
Eventually it thinned out to the point where going out without a bandanna was not an option but it took two months to get to that point! Sydney bought me a cute purple bandanna that I could just slip on and was really comfortable. I wrapped the scraggly long hair I had in a bun and clipped it under the back of the bandanna. I still could not bring myself to cut it! At the end of summer Becca, Tamara and I went out for an afternoon to the movies. I had hardly been anywhere all summer and because I wasn't feeling too bad that week I needed to get out of the house. On a whim that day I made an appointment to go and try on some wigs. The bandanna was working well for everyday outings but if I had to go anywhere that was fancier then jeans and a t-shirt I had nothing. I also felt that if it looked like I had hair when I was out where no one knew me I could just blend in and not be given that head tilt sympathetic look. As much as I know the sympathetic look is because people care it still starts getting on your nerves after awhile. Just being around people sometimes where cancer is not even mentioned means I don't have to think about it either.
We went to the small boutique where I had made the appointment, I sat in the hairdressing chair in front of the mirror and Becca and Tamara were ready to give me feed back to my new look. I took a deep breath as I pulled off my bandanna nervous to show not only the woman helping me but Becca and Tamara too. I wasn't sure if they had realized how much it thinned and that you could see right through to my scalp. If they were at all shocked that I had been sporting a hair style that reminded me of a middle age man that was holding on to his 80's long rocker hair as it thinned due to male pattern baldness they didn't show it for a second. They just smiled warmly at me and I could see how much they just loved me in that moment. Tamara and Becca probably know more about me then anyone and can both read me like an open book. To me they always seem one step ahead of me and know what I need before I even do. They know when I need their strength, when something is just too much, and the right words at the right times. They know when my eyes shift to them with worry, sadness or hope they have already planned what to do before the emotion has even hit me. They are a little magic that way. I could feel the slight burn of tears in my eyes but the light on both of their faces took it away. "What style were you thinking of?" the stylist asked, I hadn't really thought about it and realized I can pick whatever style I want, the appointment took a whole new turn, this was now fun!! It was like going to the hairdressers and getting a whole new look over and over again and the ones I didn't like I just took off and tried on the next one. I decided on two completely different looks, one that look very much like my normal style and the other something I always wished for but never had, short dark and sassy!
About 8 weeks after my last chemo treatment I started checking my scalp to see if there was new growth and wondered if it was going to start growing back. I had my sister Suzanne check with her phone's flash light, making sure she checked every inch of my head for any new growth. Finally it started to grow back, I was so relieved! Because I had left the string wispy hair and refused to shave it off the hair coming in started pushing the dry damaged longer hair straight up. The best description of what it looked like would be troll doll hair, even I had to admit I looked crazy. I was still wearing my bandanna but the hair growing in made it itchy. That was it, it was coming off, I started hacking at it myself one morning even before I had my coffee, which probably wasn't the best idea, but when I make up my mind about something my patience seem to disappear. When I was done it was a little chopping and uneven but very very short. I admire the strength of all the woman and men that lose all of their hair because I never lost it all and I still had such a hard time with it! I have more treatment ahead, know it will thin again, and in different ways now that I have short hair but I have an idea now what is coming and how long mine takes to start growing back (about 10 weeks). I am getting use to my short hair and have had many supportive compliments which I am very grateful for! I have in the past wished my thick red hair away because it was different or it won't do what I wanted it to do but as I looked in the mirror, as it thinned and even more now, I appreciate every single strand on my head!
When hospital stays and doctors appointment are long and boring my friends and family have always found ways (mostly inappropriately) to keep us entertained and kept me in good spirits.
Click picture to see caption
When I was in high school I hung out with a group of people that, let’s just say, didn't shy away from smoking some weed. I, however, didn't want anything to do with it. I didn't like the smell or the idea of getting high. There is no real reason why I thought that but I just felt like it was not for me. As the years went by, specifically in the last five years, more and more information has surfaced regarding how it can help medical conditions which opened my mind, and lightened my view on marijuana.
When I was given a stage 4 cancer diagnosis I felt completely out of control. I frantically started seeking out alternative and complimentary things I could do to help heal. Improving my diet was the first thing to come to mind, even though for the most part I eat pretty well. The information about the types of alternative therapies is very overwhelming! There are so many different options. A friend brought to my attention marijuana to help with the side effects from the treatments I would be getting; nausea, lack of appetite, troubles sleeping and even the anxiety that goes along with a cancer diagnosis. There was also a possibility of using it as a treatment as well, as there are some beginning studies that show the promise of the oil acting to reduce tumours. As soon as I started reading more about it I deeply felt this was the option for me. Again, and I am sure I will say this a million times, I have a great support team and as soon as I said the word that I wanted to try cannabis my girls jumped into action and helped me get information. They found out what paper work I needed and helped me fill out a ton of forms. I don't think my friend Megan will ever let me live down that I asked her to help me fill out 10 pages of information and it turned out to be 10 pdf’s that equaled about 30 pages! Really though, as if she didn't want to spend the afternoon with and find out way too much personal information about me! We contacted Medi-Green in Perth, they helped with every step, getting me information and setting up appointments.
I want to be very clear that the rest of this post is how it helped me, my experience and in no way am I giving medical advice.
During one of my first oncology appointments I brought up that, in combination with my "traditional" treatment of chemotherapy, radiation and surgery I would also like to take cannabis as well. Even though my oncologist does not prescribe cannabis he was very open to me taking it. He openly said that he has not researched it himself and really didn't have an opinion on how it works but assured me that it would not poorly interact with what he planned unlike some alternative therapies. He also felt that having me feel in control of a part of my treatment would, on its own, be beneficial. In consultation with my Dr. I agreed completely with the treatment plan he laid out for me and also trusted that he had my best interest in the forefront of his mind. He also assured me that he would be honest every step of the way, and if there was ever a time that my treatment changed from curing me, to maintaining my quality of life he would clearly let me know. The following week I started a very aggressive chemotherapy. My doctor asked if I could do one round without the cannabis. Then he would have a bench mark of how I handled the treatment on my own. I was so nauseous within a half an hour of starting the 4 plus hour outpatient chemotherapy. I was given a steroid to help settle the nausea but it didn't touch it. I came home with a low dose chemo pump on for an additional 48 hours. That first night I was so sick. I was up multiple times throwing up. I couldn't eat and could barely drink even water. The next day I called my doctor and he had me come back into the hospital for hydration so I didn't get too depleted. The rest of the week, even after the pump was removed, the side effects were still a lot to deal with. Fatigue, nausea and a complete brain fog made it hard to even think. Worst hangover ever! Round two I had the vaporizer and my oil was on order. I couldn't believe the difference! I had two different strains of cannabis, a THC strain to help with nausea and sleeping and a CBD strain that helped with pain and ease my sore muscles. You can't use the vaporizer in the hospital but as soon as I got home I used it and it calmed everything immediately. I was so thankful because throwing up is the absolute worst thing to me and the fact that, if I had a wave of queasiness, I could take a couple puffs of the vaporizer and it took it away was amazing.
My oil came a day or two later and I started it orally in a very small amount. Now l had no tolerance what so ever! I did have a day where felt high but compared to the brain fog the chemo gave me I would much rather be high. I think it was day two of taking the oil where it hit me a little more and I just had a day where everything was so funny for no reason. I remember having dinner with the kids and Daryn was telling me about his day and I couldn't help but laugh, a lot, and then I couldn't stop. It was the typical power laughing stereotype. The more I tried to stop the harder I would laugh, then the kids started laughing at me. Daryn blurted out "wow mom I didn't realized you thought I was so funny!" I mean, I do find Daryn hilarious, but in this instance I think it was more the oil then his funny story. When I went in for my follow up from my second round I did tell my doctor how much it had help with the side effects. The only nagging issue was cramping in my stomach. He wanted to give me a CT to see what was going on. He made sure to tell me that even though they would be able to see the spots of cancer they had found, after two rounds of chemo it was way too early to see any effect it would have. The CT showed that I had colitis which was inflammation of my bowel. This is a side effect of the type of chemo I had. He decided to give me extra time to heal before doing another round. His face lite up after that and he said "I also see on the scan that there is noticeable shrinkage to the tumors"!! I couldn't believe it, the usual number of chemo treatments it takes to see a result is 4-6. My friend Tamara had been with me all day and we were both just so so happy. My nurses were coming in and giving me hugs which just confirmed to me how awesome this was. After having a bit of a break, treatment day for round three came and I had been taking the cannabis oil for 3 full weeks. I had switch my way of taking it to suppository for a couple reasons, first it totally stops any head high I was getting, even though I was a source of humour for family and friends it was not practical, and secondly, by giving it as a suppository it was exactly where my main tumor was so it would be a topical application as well. They altered the dose of chemo round three a little because of how hard it was on my system but the difference with me taking the oil was unbelievable! Even though I still had the motion sick feeling the whole time I was getting chemo as soon it was done the nausea was gone, I ate on the way home and I slept through the night. One of the other side effect I had, whether from chemo or the steroids I had to take, was a raised heart rate and a difficult time sleeping while I had the pump on. Because I slept so well after my third round of chemo with the oil, the fatigue I experienced with the other rounds was considerable less and the fogginess was hardly there.
I did a 3 month cycle of a high dose cannabis oil as an alternative therapy and used the leaf form to vaporize for side effect relief. I also use the cannabis oil in the hospitals after my surgeries as well for pain relief and vaporized the CBD strain for pain control when I got home. My first surgery was my liver resection and I had morphine for pain relief and it made me so sick that I couldn't keep anything down. I switch to my cannabis oil and when I was release from the hospital was not on any other pain medications. The second surgery was my colon resection and I opted out of taking any pain medication but took my cannabis orally for pain control and to help me sleep. I tapered off taking it after that surgery because I could not take the suppositories until my colon healed. I still took a very low dose at night to help sleep because I was so uncomfortable. The last surgery was on my left lung. I bounced back very well even though this was supposed to be a very painful surgery. I left the hospital after 2 days and was grateful that I could be home where I was more comfortable and can sleep. I was getting stiff muscles and some muscle cramping about 5 days after surgery because most of my muscles had been cut through. I used the CBD in my vaporizer to calm and relax them and it worked great.
I have one more surgery to go for my right lung and hopefully flip my ileostomy back. Every surgery has been so different so I go in with an open mind and I don’t assume it will be easy. I know they all have their own challenges but I will have my cannabis along with me.
At this point, and after reading some others criticise KGH, I have to say the hospital has never had a problem with me using my cannabis oil! I brought the bottle with all the information on it to my pre-surgical screening. They charted how much I took and what times. I self administered it in the hospital making sure I told the nurse what times I took it so they could keep track. I even had the head of the pain management department spend a few hours talking to me about my experiences with it. She was very interested in learning more about it. I will be doing a lower dose of chemotherapy after my last surgery. I'm not completely sure at this point for how long. My plan is to do another high dose 3 month cycle of the cannabis oil in combination with my chemo. There is no medical testing that has been done on me to see what the cannabis is or isn't doing but all I know is that I am not on any other medication and my doctors are very happy with how fast I have healed and how well I am dealing with all of the major steps that have been taken. I am grateful everyday with how well this journey has been going so far and I do believe that for me the cannabis leaf and oil have helped every step of the way.
* please note my stoma and ileostomy pics included
My treatment for my colorectal cancer has been many steps but the one step that gave me the most anxiety is being told that I would have to have an ostomy. The location of the tumor was very low in my system and the possibility of not being able to reattach my colon was very real. My doctor, who is top in his field, reassured me he would do everything he could to put me "back together". Let me back track a bit to what an ostomy is. Depending on where the colon has to be resected depends if there is a need for a temporary or permanent ostomy. The two options that were considered for me was a temporary loop ileostomy which is a small amount of the small intestine pushed through an opening in the abdominal muscles on the right side near my belly button or a colostomy which is pushing the end of the colon through the abdominal muscles on the left side near my belly button. (Hot and sexy right???) Where the majority of my anxiety came from was not knowing until I woke up from surgery what it would be. This was because of many factors, how low my tumor was, if there was too much scar tissue from the radiation treatments I had, the amount the tumor shrunk because of the radiation and if they would have to cut into any of the muscles. Facing a complete life change that I could have forever was overwhelming. I had no control or choice about it and had to completely trust in my doctors and their abilities. I prayed and meditated that I could handle what was going to be given to me and also warned everyone around me that a complete breakdown was a possibility! I had an appointment with my stoma (a stoma is the small part of the intestine that pokes through) nurse a week before my surgery where she mapped out where the incisions would be for my ostomy. One X on the right and one X on the left depending on what was found during surgery. I had to look at the marks for a week knowing it would be one or the other, talk about a friggin' mind trip!!! "Just tell me which one it is going to be so I can wrap my head around it" constantly rolled around in my head! I tried to learn as much as possible without Googling too much and scare the crap out of myself. I found a great blog and YouTuber's that had great advise to live with and deal with an ostomy. Surgery day came and I nervously walked into the OR with that ridiculous gown they make you wear. The door opened and Lady Gaga was being played in the operating room. I asked one of the nurses who the Lady Gaga fan was. My doctor wasn't in the room yet but she said it was him. Seriously?? I thought, I actually thought she was kidding but when he came in I asked him and he loved her! He wanted to know what music I listen to and I told him I am an alternative 90's girl all the way. Then he had me pick a song to play so that when I went under I could hear it. I asked for Foo Fighters - Best Of You and he had one of the nurses pull it up right away. This guy is a little odd and I love it!! He made me feel completely at ease and I am sure I was smiling when I went out. This was such a relief after a very stressful couple of weeks. As I woke up and reality set in, I nervously realized "holy shit this is it!" Before anyone came in to see me I slowly felt over my stomach and it was on the right!! It was temporary! My doctor did what he promised and even took into consideration that my incision look as neat and tidy as possible. I was so happy and felt a huge weight taken off my shoulders. I felt like this was where my cancer started and it was now gone. This was the big one and I could turn a corner to the up swing hopefully to this battle. Having an ileostomy bag for the first couple weeks was definitely a learning curve and I had days where I was so frustrated and thought I couldn't deal with it but it has become very manageable and something I don't often have too much concern over. I lovingly refer to my stoma as Nubbins and even though she can be a little bitchy sometimes when getting her bag changed she is usually pretty good and I am learning more and more how to deal with her. It's amazing medically what they can do and crazy how something so different can very quickly become normal. I might be saying good bye to Nubbins in a couple weeks and have to relearn a new "normal" but I am really glad I had her. She saved my life really :) In the midst of my stress my friend Sarah reminded me "At the start of this journey when you were diagnosed and things seemed very grim if someone in that moment said "I can save your life but you will have to have this bag" what would you do?" I stopped in that moment of self pity and thought perspective!!! " I would take it in a second".
F bombs included!
There have been stretches of time over the last 8 months that I haven't felt good and boredom quickly sets in. YouTube and funny videos have been an easy past time. My friend Paul will come over and we have had "video offs" where we will cast the funny videos we have come across and laugh at the stupidity of our twisted sense of humor. This is one of the videos he played for me one day and it has become the funniest coping mechanisms for all the shit I have had to deal with. It could seriously help with anyone's crappy situation. It also explains what a chicken accents is. The amount of times my friend Becca and I have talked to each other in chicken accents after I showed her this clip is board line insane lol. Please enjoy and let me know if you use it in your own life!! "Nice little chunk of change"
When your world gets turned upside down and everything you know and every way you do things just doesn't work anymore you have to adapt real fast!! I was always on the go, I ran a business, was starting another one, was parent council president, coached soccer, took up pottery, tennis, spent time with my kids and was always up for a night out or party! I loved all of it but there were lots of times that I would say yes to going somewhere, doing something or adding additional obligations to an already busy schedule. The months leading up to my diagnosis I was pushing myself so hard to just make it through all of my commitments. The fatigue of the unknown cancer had crept in to the point where I wasn't making it through the day. I was sitting at a doctor's appointment in tears telling them there is something majorly wrong, I didn't know what but I knew something. I was beyond exhausted. When life changes in seconds you have to learn the lessons that are being presented to you because they are there if you allow yourself to see them. The first big lesson was to say NO. No to my clients, fundraising events, meetings, friends, kids, everyone. I just couldn't do it. I actually had a fear of putting a stop to almost everything going on and turning the attention to me. Again with the support of the amazing women in my life they reassured me that there was no other option. I had to look after all of my needs first if I was going to fight what was ahead. I needed my sleep, to eat, be happy, feel relaxed, be honest in how I felt, and not push myself. I have never in my adult life put me as first priority and after doing that for the last 8 months I look back and think "WHAT THE FUCK WAS I THINKING!!" Why have I not looked after myself and waited till this to do it. I mean at the beginning it was so foreign to say no but now I am like a pro! I know when schedules go back to normal and I go back to work there will be times I will have to again push myself through and say yes when I would rather say no but it will not be like before. I will make time for myself because I am a way better person because of it. I have had to say no on every level to my kids for days at a time. I have had days where just getting out of bed wasn't an option. I relied on them to get me something to eat, be quiet for the entire day and not even have them come in to my room and talk to me. And you know what, nothing bad has happen, actually the opposite. Daryn has come home from school and asked me what he can do to help, Sydney winterised the car and had it repaired with the help of my dad. They have stepped up in so many ways and are doing great because of it. The time we spend together is more enjoyable even if for that day its only 15 minutes. I am truly learning that listening to my body and assessing how I feel and what I can and can't do means I am in a better place. As health increases there will be more to do but I have made a promise to myself that I don't have to impress anyone, Giving a burnt out version of Amy is not worth it to anyone involved anyways. I can see times in my life where I should have said no and would have been better because of it. So if you are feeling at the end of your rope and it's just getting to be too much try saying no. Make some "you time" and don't feel bad for one second because the love you give will be that much more when you love yourself first!!!
Today was Bell Let's Talk day in Canada who's initiative is to began a new conversation about Canada’s mental health. To reach out and engaged in an open discussion about mental illness, offering new ideas and hope for those who struggle. Just by fluke last week I invited a couple friends over for sushi not really paying attention to the day and then earlier this week got invited to another friends for lunch today as well. So as it ended up I talked and talked all day. Not about mental health but about so many other things. It got me to thinking that having people in our lives to talk to is so important!! Don't get me wrong I love my alone time too and will have an hour long bath just so no one will talk to me in my house, but knowing that if I need to talk about anything I have friends there for me. I also realised the importance to talking to friends and acquaintances of all levels of closeness and how different those conversations can be and how they can add to your life. I also want to add that when I referring to talking I mean the back and forth conversation of talking and listening, not just me rambling on to people but I am sure I do that too some days. I have friends that know way too much about me, I am sure they know me more then I know myself. I tell them everything, in detail, to the point they might just be thinking please just stop what is coming out of your mouth!! I have friends that I know when we sit together we are almost exploring looking for another point of view from each other where we can leave thinking I have never thought of it that way before. I also have people that I, and I know this will be a surprising to some, just listen. One of my favourite things is to listen to someone who has a complete opposite opinion than me and ask how they got to that opinion. It's amazing to me when I can see why they think that way. I usually don't agree with them but that's ok because my opinion is form through that path I am walking. I try when I am down to reach out to my friends and sometimes just talk about absolutely nothing, and I mean pointless stupid stuff that makes us laugh and really makes no sense but I feel better at the end. So if you need to talk about mental health please do so or if you can't maybe just talk and see where it takes you!!
I am not sure how I lucked out this much but I have these two people that I hang out with that are pretty friggin awesome! Oh yeah I also made them! These two weirdos make me laugh so hard sometimes I literally can't breath. My daughter Sydney who just turned 18 has become this beautiful adult before my eyes. I am amazed that I got through the high school teenage girl years without killing her and she liked me most of the time. As my role in her life is changing from full on mom to someone to give advice and guidance we are developing such a great friendship. Daryn will be 12 this spring and is one of the most unique, corky, kind people I know. His ability to know what to say to put a smile on my face is uncanny. I have leaned on both of them for comfort and support and they have never once let me down. Even though as I type they are driving each other crazy and screaming like lunatics I still could not have imagine going through all of the treatments and surgeries without their help. The lessons they have learned I am hoping contribute to the cool adults I know they are going to be. To love someone through the good is one thing but to love someone through the hard times is something completely different and my kids have stepped up and held my hand through everything so far. They are the first faces I see when I wake up from surgery and the looks on their faces when they walk into recovery and make eye contact with me is pure love in every sense of the word. I have been totally open and honest with them about everything and they have had the fear of a fate unknown as much as I have, especially at the beginning, and they have handled it better then I ever imagined. Happiness is key to fighting back against cancer and Sydney and Daryn have given me that a 1000 over. Awesome kids are the best!!!