There have been so many ups and downs through out the last 8 months and battling cancer is a constant mind game. Being realistic about what is happening as well as keeping it at arms length to not let it consume me is a constant balance. I am usually pretty good at keeping everything in check and am continuing to enjoy my normal life, but on the weeks of my surgeries I start struggling. This week is one of those weeks, Thursday I will be going in for hopefully my last surgery of the four they planned. As soon as the surgeries have been one week away, an under lying anxiety starts creeping in until the day before where I am somewhat of a basket case. The coping skills I have built for some reason don't seem to work as well when it come to approaching surgery dates. Before September 2016, I had never had any surgery, not even a minor one. My liver surgeon who did my first surgery was going over the procedure in his office and noticed the worried look on my face. "Have you had surgery before?" he asked. "No," I said "so I decided to sign up for all of them!". He laughed and assured me he would take good care of me. When I finished chemotherapy and radiation, someone mentioned how great it was that I was on to the next step. I smiled and agreed but in my head thought Yeah but this is the step where they start cutting me open!!!! I had no clue what to expect which is one of the hardest things, the fear of the unknown. I am very lucky that I have amazing surgeons that are not only at the top of their fields but are also very caring and reassuring. Each surgery has been so different and all have had unique challenges that I had to heal through. Since September I have had 65% of my liver resected, a colon resection and temporary ileostomy, left lung wedge resection and this week will have my right lung resected as well as my ileostomy reversed. The most amount of time between each have been 8 weeks and only 6 weeks between my liver and colon procedures. Needless to say I now have the routine down pat.
I wake up at a time that I don't consider morning but the middle of the night. I go in and kiss each of the kids good bye, cuddle with them for a second and tell them I can't wait to see them after I wake up. Their faces are what I keep in my mind and are the ones I think of as I am put under. I always have a bit of a sinking feeling as I leave the kids and shut the door to the house. My mom and dad drive me and it is always a quiet drive, its dark and I wish I was still sleeping. The hospital is always weirdly busy for that time of day and it feels like it just never sleeps. We go up to check it and I anxiously wait for Becca to get there to calm me down. They call me in and I get to change into a very unflattering gown and then get walked to the OR. The OR is usually busy with nurses and residents organizing everything for the doctor to come in. I have had three different surgeons and each one has come in and put my mind at ease that they will look after me. Sydney brings Daryn in, Melinda or Megan meet them there and I am so lucky to have a waiting room full of people who love me as much as they all do. The support that my kids get is unbelievable, Daryn usually gets pretty anxious and I have friends that know how to settle him as well as make sure he is not looked over during the process. After the doctor comes out to talk to them about how the surgery went the kids, especially Daryn get very anxious to see me. Sydney being older has a great calming affect on him and is there to hold his hand and comfort him when needed. Again my kids make me so proud with how they have handled everything with more strength them some adults. As I come to in recovery my kids two faces are the ones I need to see, they always light up when they see me and my heart almost breaks because of how much I love and need them. They can only stay for a couple minutes, and only two people can come in at a time. As mom and dad come in I can see the relieve on their faces that I am ok. Dad usually has teary eyes but mom is always smiling. Mom always squeezes my hand tight and asks me how I feel. Megan and Melinda have stayed with me after my surgeries making sure I am ok, help me move to my room and get me settled.
Here is when the challenge of my support team starts because I am a pain in the ass lol.
The word patient is completely lost on me, friends and family would all agree that I am more of an impatient, which I am sure doesn't help the situation. I hate being in the hospital, even though the staff has been great, I like my bed, my tub and my couch not to mention I like the taste of real food. I find the idea of a semi private room bizarre, imagine you have a flu or are sick in some way and all of a sudden there is a complete stranger in your room that doesn't feel good either. It is just such a weird feeling to me. I have come to realization that the hospital is not a place to heal, they fix me but the lack of sleep, the disgusting food and uncomfortable beds are not a place to heal. I do as much as I can to get out of there ASAP. I am a lover of my own bed, I am not one to stay at others houses often, camping is not for me and even a hotel bed takes a couple days for me to get use to. As trivial as it sounds I think some of the anxiety is actually because I would just rather be home. I will seek out what the doctors and nurses are looking for to "ok" me to go home. I ensure the people around me that I would never leave if it was detrimental to my health but past that get me the hell out of here!
The word patience is better suited to my support team that have to put up with me even when I get home. I find it very frustrating not to be able to do things for myself and show it by being grumpy, glaring and pouting like a baby. I have a clear picture in my head of Becca and Tamara standing in my kitchen after my last surgery getting dinner ready and both yelling at me to just sit down and chill out. I was puttering around my house trying to "help" and they both just had enough of politely telling me to not pick something up, just sit down and relax and leave it up to them. Becca had put up with me for 2 straight days already telling me numerous time to just sit and relax. I worry with this up coming surgery that it is on my right side which is my dominant arm and how much more it will limit my mobility. I have learned that planning for, not the worst, but the likeliness that it will be longer than I hope to manage on my own is better than assuming for the best then scrabbling to find help if I need it. It is a good solid two gong show weeks usually of being in pain, uncomfortable, bitching, being grumpy and whining (this is why they take shifts, I am sure, so one doesn't strangle me). They all talk about me behind my back organizing what I will need for the first week I am home from the hospital, warning each other about what mood or state I am in and what I like to call plotting against me by hiding things like the hospital issued staple remover knowing that I probably would have started taking them out on my own.
As my anxiety of being cut open, being in pain, being away from home, the unknown of what's ahead, and how I will deal with this surgery creeps in I can find ease and comfort that my love ones, my support team, my heros, and the ones I can rely on, know me better than I know myself, love me through the bad and ease my fears by being there for me every step of the way.
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.
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