Today I woke up and it felt like Christmas morning which is suiting because this all began last Christmas 2016. I was half way through my treatment and surgeries, things were seeming to be on the right path and what I was once told would be an incurable cancer diagnosis was now being talk about as a curable out come. I started seeing a less urgent look on my doctors faces, I started to have a very strong sense that there will be an after treatment life. I had also put my Ass Army Girls through hell and back with the two larger surgeries being very hard to handle. Long sleepless nights in the hospital and a week of needing a lot of help at home once I was discharged. I watch these amazing woman juggle their own careers, families and time to be with me and help my kids, they were exhausted but always had a smile on their face for me. A group chat was started, that I thank god wasn't on, that kept them all in the loop of who was with me, what needed to be done and how I was doing. Now with my health returning and the brain fog of the last year clearing I truly understand how much they did.
As the Christmas season was approaching I thought and thought about what could I do to even start to show my gratitude for all they were doing? How do I even start to say thank you to people that for a year literally held me up, cleaned me up and gave me a reason to keep going. The idea of going away popped into my head and I was so excited, but then I had the fleeting thought of, wait, what if I can't go, what if I am not here? NO, I thought I will be there and I am going. I called my friend Trina who lives in Grand Cayman and bounced the idea off her, she agreed that is was just what every one would need. Tamara and I had been down the previous February and I knew as soon as I got home it was a place I needed to go back to. It felt like my second home and a place I fit in. I met great people through Trina when I was there and made great connections with some fabulous women. Using a small portion of my critical illness insurance I gave Trina a budget to find me a beach side cottage to have a girls week in. I sent her some links of some modest homes that would be in my price range and I started planning a Christmas surprised for Amy's Ass Army Girls.
I got a call a week or so before Christmas from Trina that she had a house I could rent. "I got you Point of View" which was a high end home on one of the rental sites. My initial reaction was panic as I knew there was no way I could afford this beautiful home. "No you don't understand Ann and I got you Point of View!" Ann is Trina's friend that I got to know when I was there who works for the company and looks after the rental properties. I was in shock as I listen on, "Ann and I talk to the owner and told them your story, what you have been through and what you are doing for your amazing girls and we are going to work within your budget during off season and help you give them a trip of a life time." Tears came to my eyes and I was so taken back and grateful that I could have the chance to give these wonderful woman what they absolutely deserved.
The next week and half I just couldn't wait to give them this wonderful gift! On boxing day I invited them for a morning coffee saying that I had a little something I would like to give each of them for Christmas, it was a freezing rain kind of morning but the Melinda, Suzanne and Becca joined via Skype so we were all together. Megan and Sarah expressed their wariness of what it could be, knowing me and my twisted sense of humor. I had written a poem explaining how much they meant to me and that the word puzzle I provided would explain the gift I had gotten them. I got to watch their faces as it became clear that the letters spelt out Grand Cayman Island. They all just stared at me. Rendering this group of women speechless is a feat in its self! Then I got to tell them that after treatment we were all going away and showed them the amazing place we are staying on the beach! The reaction of excitement was priceless, I don't think I can put into words how happy it made me, that memory will stay with me forever.
What I didn't realise was what it would mentally do for me, since that moment I have been able to talk, plan and be excited for my future! I could picture myself there and there was no damn way I was going to miss out being there with them. It was what I meditated with, what I thought about when I drifted off to the unknown when going under for my last two surgeries. It took away the day to day thoughts of hardship to excited fun thoughts.
And not it is here! The moment that I am so grateful that I am still here to have. I remember only asking Ann once when I would confirming my booking, what happens if I can't go, she assured me not to worry she would handle it and from that moment on I let that thought go and never questioned it again. This will be a trip of a life time but it is just so much more, I am so excited to see these wonderful amazing woman smile, relax, have fun, and create memories that have nothing to do with anything we have all been through in the last year. So to Sydney, Suzanne, Mom (Fay), Becca, Tamara, Melinda, Megan, Sarah, Trina, Ann and Blythe I thank you for giving me my life and watch out Grand Cayman cause here we come!
I along with the rest of the country have been mourning the loss of Gord Downie, I have felt actually grief and the burning of tears in my eyes. I listen to song after song on the radio as I drive the country roads back and forth to work. The reel of memories linked to the Tragically Hip from concerts I have been to, songs sung in the car and around the campfire, interviews and documentary's I have seen over the years since I was young play in the front of my mind. The band had such an influence over Canadian music; their songs were so closely linked to our history, geography and who we all are as Canadians.
I have seen articles and news stories that have reflected why we care so deeply, I have asked myself that as well. Celebrities have passed away and I have felt sad, it has touched me and I have reflected in what they meant to me over the years be it a TV show I watched, music I listen to or a movie star I have seen many times but some how this is different. It feels closer, more like a friend or family member, but why is that? I have asked myself this over the last couple days and all of the reasons I have heard have come up short. I thought at first it had a close to home feeling because I would diagnosed with cancer around the same time that he became public with his diagnosis but it wasn't that either. As I clicked on a YouTube clip of him receiving his name from the First Nations Chiefs it hit me why, and it is so simple and right in front of me. Gord's family life was never plastered in magazines or on TV. There were no rumours of drama or scandal, there was nothing that shed a light to his private life but none of that mattered because we didn't need to find out "who Gord Downie was" he full heartedly showed us. This is why it has hit so hard, Justin Trudeau said through tear filled eyes in his address to Canada as we were all learning about Gord's passing "Gord was my friend but Gord was everyone's friend."
Every lyric he wrote, movement he made, passion he had was truly him. For 30 years he opened himself up and we were able to feel with him. The last year and a half of his life was selfless in so many ways. I watch the last concert in Kingston from my couch at home with friends after receiving my third round of chemo and was in awe at how he could have even been up on that stage using as much energy as he was let alone doing it night after night on their last tour. My heart ached watch him give absolutely all he had in front of his entire country. He kissed his band mates and openly showing his love, showed the wear from his cancer treatments on his frailer body and the very visible emotions that he showed with every song. How he used this platform to speak to something he believed in. We came together that night and he showed us what we could be.
He could have taken his bow that night on that stage and closed the door to the public and we all would have understood but instead he worked, not for himself but for others. He not only spoke to reconciliation but used his art to strengthen his message, showed by example what could be done, opened his heart again and used the power of love to speak. You can see the brutal honest emotions when they give him his new name "He who walks with the stars", that is when I realized that honesty had always been there. His interview with Peter Mansbridge was open to his struggles with his memory and his fears about dying, he was not trying to impress or inspire, it was him connecting to his friend and sharing what was in his heart for all of us to hear. He was completely vulnerable in every way and showing us all how that is true strength.
So now what, as the days past after two very profound events in the last year clearly showing us a lesson we should be learning. Why does this touch us so deeply, could it be because we all know that this is what we need to be? If we all showed a little more love, a little more vulnerability, and understanding will we find the path to love our country, each other and all we are? That we can appreciate how far we have come at the same time as recognizing where we went wrong and could be better, how to heal and use our difference to come together. We had a gift given to us that we have had to let go but let a little bit of Gord Downie be in all of us as he now walks amongst the stars.
One of the weirdest feelings I have had during this last year is when people try to sympathise with me, sadness in their eyes and question how this has "happened" to me, I am so confused. I have questioned this in my head over and over because why not me? There is no reason for any of this. I am sitting with this today as I read the words of Ken Rose as he let go of his wife last night after her battle with brain cancer. Usually I write in clear paragraphs how I feel but today it came out in another way. I am in no way a poet but as I did some small odd jobs around the house this is what came out and thoughts rolled around and trying to make sense of why not me:
Do I get to see tomorrow or is it my time
Is this really the mountain that I have to climb
They say I don't deserve this, it is not fair
But who does deserve this, who's cross to bare
I am a stronger warrior if I see another day
or is it the ones that fight and gracefully fade away
Is it all just in the balance, is it just left to chance
Did I use my time wisely and say yes to the dance
Hold onto joy that I got through in one piece
But hold quilt as around me other lives cease
It is not for me to question if one day that could be me
I'm grateful for today and pray I see what I need to see
I asked Ken if I could post his post to my blog, here is his post of his final moments with Deborah, kiss and love the ones around you!!!
This is the final chapter. I Wrote this for Glioblastoma Support Group that has been so helpful for me during this journey.
So how do I start, when this is the end?
At 7:59 on Friday the 13th, My sweet, intelligent, beautiful Deborah departed. At that moment, my world did not fall apart. That might shock you as it certainly surprised me. I am not devastated because I have spent too many days hop...ing that Deb would be freed of “The Beast” that had invaded her brain. I was destroyed with her ten months ago when it was revealed what we could never imagine, “You have a very aggressive malignant brain tumour.” I didn’t comprehend then that it was a Glioblastoma Multiforme, or how deadly it really was. But, I was scared, and I went into mourning immediately. We grieved every step, ever test, every treatment, every crisis. For Deborah it was a steady and rocky decline. I’m not going to deceive you, because if you are on this Facebook page you are either going through this as a recipient or a caregiver. No one gets out of this life alive but for the warriors and those who love them the war has already started. For Deb and I, it mercifully ended last night. We both were released. She to a better place and I to remain on this side of the plain to celebrate our love and her life. I don’t know where she went, but I’m damn sure it was far improved from the death march that steadily consumed her mind and body. I’m not Christian, but I have close friends that are and I invited them over to pray for Deborah when I saw that she was getting ready to leave this realm. I was moved by the Psalm they read, by the Prayers they offered, and by the love of Jesus they so fervently believe in. The truth be told, I was not going to leave any stone unturned. From the beginning Deborah and I tried to live our lives with kindness, compassion and love for ourselves and others. When we realized that our journey together was going to be challenged and that the diagnosis was fatal we reaffirmed our love, and our vows. We didn’t do this at an alter, nor in a ceremony or in front of our loved ones, we never have. We did it behind a drawn curtain in a hospital room, with a farting room mate recuperating from surgery beside us as witness. Until the moment she died we kept our hearts interlocked and so it will remain. Death does not destroy what we had, it lifts it heavenly. It becomes mythical. No, I only felt joy when I realized Deb had taken her last breath. We both were released. I can understand your scepticism if you’ve never experienced this before, but I was the one to stop her food and water nine days earlier. I administered the morphine and another sedating drug each day when I thought she may need it. There was no nurse, no doctor. Only me, at home, lying next to my wife wondering if she was in pain, if she was conscious. My mission was to keep her comfortable and to get her to the finish line, sooner rather than later. I wanted no more suffering for Deb, our family and friends. I felt I had said everything I wanted to say to her for eight days. Many told me that it was important for me to tell her that I would be alright and she had permission to leave. But, I had the feeling as I was reassuring her that she was looking back at me and thinking, “you talking to me? I’ll go when I say so.” So knowing that she must be tired of me repeating myself, even with words of love and gratitude, I took a different tactic. A friend had sent a link on YouTube to a Nat King Cole song: L.O.V.E. I decided to play it for her. It was so poignant and beautiful. When it finished playing the Personal Care Worker asked me what music Deb listened to. For a second I was blank, but then her play list starting forming. I searcher a Louis Armstrong tune, What A Wonderful World and played it. Then, I played Three tunes by Van Morrison. Someone Like You; Have I Told You Lately that I Love You and Into the Mystic. Two of the three songs had me in tears! Then I played, Israel Kamakawiwo’ole’s Somewhere Over The Rainbow. I followed that beautiful song by three renditions of Hallelujah by Leonard Cohen. One by him, one by Rufus Waignright, and one by KD Lang Then we listened to Prayer, a duet by Andrea Bocelli and Josh Grogan.
On Debs last day on earth, I played lots of the same songs plus additions, but when Deborah’s breathing started speeding up and getting loud and laboured I had a bad feeling. So I brought my head alongside hers and draped my arm over her chest and held her. I then softly told her that I wanted her to fill her head with only beautiful thoughts. I told her it was time to not be scared but to picture all the people she loved who were waiting for her. I told her that I was going to let go of her and that in a short time her father would take her by the hand, and lead her and take care of her, again. I told her that her aunts and uncles, her grandparents and Myrtle our deceased cat will be there. I told her to think of everyone and everything she loves. I remember mentioning flowers, cats, horses and cows even ice cream. I told her it was time to take the jump, and it would be just like jumping into our favourite swimming place on Black Lake. I reminded her how she was always brave and jumped into the lake before me, always in delight. I told her to do it now, to let go and jump. I wanted her mind to be overflowing with the places, the sights, the sounds even the tastes that she loved. I didn’t want the smallest amount of space in her head available for her to be scared or afraid. Suddenly she made a gentle moan, and her breathing softened. I had put in a Tourtiere, a traditional Quebec meat pie, to have for dinner previously in the oven and when she relaxed I thought that the crisis was over and I reluctantly got up to eat because it was almost eight o’clock. I sat on the edge of the bed to eat when the Personal Care Worker called my name and said Deb had stopped breathing. She had often stopped in the last 48 hours only to start again. I considered it practice for the real thing. But this time she attempted another breath but it never came and I quickly was by her side holding her as she made her final quiver and was gone. I was equally as quiet and calm as Deborah. I basked in the moment, overwhelmed with grace. I had no tears left. I felt at peace. I still do. I know that my friends and family will be with me as I start navigating the world without the woman I love. I feel gratitude for all of you who traveled on this journey with me. You touched me with every comment, and your support has been overwhelming. Let’s keep helping each other get through this. Don’t give up hope, there is beauty and love in life and it supersedes and outlives the pain. Sweet dreams. See More
It has been about two and a half months since my last post. I didn't fall off the map, actually, I have been very busy but I just had to put a pin in the whole "cancer thing" for just a little bit. After being told the treatment was done and that I would be moving into the screening process, I had to just take a step back. My mind felt overloaded - my house was full of medical supplies and my calendar was clearing itself of the numerous medical appointments that had consumed the last year. I had this vision of the party that I would have after I was told all my scans and blood work looked good, the sense of accomplishment of kicking cancers ass that I would have and all the energy I would have with this new lease on life. (Before I go on I just want to it make very, very clear how grateful I am that I got through this year and how much I appreciate how well I am doing - in no way am I complaining).
I walked out of my oncologist office feeling like a huge weight was lifted off my shoulders but another feeling took over. It felt like I had been spun and spun around like when I was a kid, spinning in a circle and then tried to walk in a straight line. The last year my life was spun up side down, I now feel like I am stumbling around trying to find my way. Of course, me being me, I blow out of the gate and think I can go back to my "normal" pace. I waited so long to be me again that I got a real wake up call after a week and a half of over doing it when I got a flu over Canada Day weekend that put me to bed for 2 full days. Getting sick, despite the whole getting cancer thing, was not something that usually happened, or it did and I just pushed through. I learned very quickly that I can't push it, or I really pay for it, in ways I am not use to. My body is totally different, which I am finding people have a hard time understanding because I look ok and I am out doing everyday things. I think it easily slips peoples minds that I have had body parts removed and muscle groups cut through. Hell I forget sometimes and get frustrated in myself, why I am not back to old me. Someone asked me this summer when I was going to be back to "Amy" again, which I am not 100% sure how to define, but I answered with the self realization that never, will I be back to who I was. As I thought about it more and more I came to the conclusion that I am a very different person in some ways and will always be. I went through too much in the last year not to be. I look at things differently, I feel things differently, physically and emotionally and my perspective is totally different than before. For the first couple weeks that was a negative thought and a point of frustration, and to be honest I still have moments of that, but now I have a new challenge that I am excited about and it is reacquainting myself with myself and loving that person. The "new" me has traits the "old" me looked at as weak or a downfall but I am realizing that that is not true. I experience anxiety now that I never use to at weird times and that's OK, I try and embrace it and realize that my body and mind are processing all of the things I buried the last year to just make it through. I can't push myself as far right now and even though I am back to work with Sun Life, I am easing my way in to a work schedule and not over doing it. I realize I don't have to do everything for myself to prove I am capable, I now ask for help when I need it and have learned that I can help myself by saying no and not feel guilty that I can't balance everything on an overloaded plate. There is a lot of me that is the same, some things that are coming back, some things that have never left but I am a new Amy and I just needed some down time to see that.
Exactly one year and one day later I sat in my doctors appointment yesterday to see what my next step is to this long journey of fighting against a difficult opponent. At my last appointment it was decided that I should take a break and then discuss whether a lower dose chemo pill was necessary or not. During my fifth post surgical chemotherapy treatment I had an allergic reaction that shook me up a little and also eliminated the use of the drug that caused the reaction. I was very tired at my last appointment, in need of a change of pace in some way or another so I asked if it was possible to go away. I love my home but I have felt stuck in it many times this year and a change of scenery was something I had longed for. My wonderful doctor totally understood, agreeing that I needed some fun. My friend Trina has lived in Grand Cayman for many years and after finally going down in February 2016 it was a place I was eager to go back.
Getting the ok from my doctor the first thing I did after my appointment was book a plane ticket and texted Trina that I was coming. It was a great week of low key fun, relaxation and not having to think about myself or anything I have done over the last year. I put a pin in everything I have had to think about and knew it would be addressed when I got home.
As I sat and waited in my oncologist's office I was a little down that I was back in the routine of treatment, appointments and hospitals, no matter how long I have been coming to the cancer centre I am never comfortable being there. I always feel like its not really me that is doing this even though it is very apparent it is me doing it. The nurses all know me, I am very familiar with where to go and I know all the ins and outs of how everything runs. Finally he comes in, with Sydney there as well awaiting what he has to say, I felt exhausted in the thought that in the days to come I probably won't feel good again. He sits directly in front of me as he always does and the conversation goes in the direction I was hoping for but wasn't expecting. It was decided that it is time for treatment to stop and monitoring me to begin! Time to start putting my life back together and healing, finding my health again and doing things to help my body and not hurt it!! I was so over joyed that this long year has brought me to this point and I am able to hear those words.
I can actually start finding a routine that is around the kids and events in our life instead of how I feel or which doctor I have to see!! I am over the moon grateful for every single one of them and the gift they have given me but it is nice to know that I will hopefully be seeing them less. As the reality of this news is still setting in I leave you with some pictures of Grand Cayman!
I would say one of the things I find the most frustrating are the days I just don't feel good for no reason. There have been so many days where I haven't felt good for very good reasons whether it was the days after surgery or the week after a chemotherapy treatment. I know what is coming in those days, I plan for them by having food in the fridge, cleaning the house and not scheduling anything so I don't have to cancel an obligation. So when the days hits when, I know everyone has, I wake up with a headache or just feel shitty all over I am immediately frustrated, and way more than I probably should be. These are the days I have to tell myself to give myself a break, realize what my body and mind have just been through as well as realize that a busy day before is still going to kick my ass a little. As I feel my energy start picking up on good weeks I start thinking I can go full tilt like I did before, I have that glimpse of "normal" me and don't take into consideration I am still healing and going through treatments.
The days or weeks I build up in my head as my "good weeks" are why I think I get so frustrated with low grade headaches or over all blah feelings. I hold on to those days to get through the foreseen crappy ones, laying in bed with exhaustion and brain fog thinking next week I will feel better. I get so pissy that I shouldn't feel like this because I put my dues in the week before to feel good this week. I am completely aware of how logically irrational that is. Feeling off because of whatever outward factors is going to happen but I still have my self pity party moments where I can be like a small child with my hands on my hips and frowning that it's not fair.
It's these throw off moments where I have to take a deep breath and not give into them, where I actively and even out loud sometimes, have to tell myself it's fine it's just a headache, have a bath, take some Tylenol, calm down. In the grand scheme of things these moments and days seem silly but I think it's the accumulative of these moments that start to add up and wear my patience down. I know that as treatment ends and all I have left to do is heal, these days will be fewer and far between, that I can plan my Saturdays and Friday nights again and I won't have to assess every move I make as over doing it or not.
These concepts even after a year are still foreign to me, I refuse to truly believe it's me feeling like this. I am not sure how much it makes sense but I feel like if I don't get frustrated with these feeling and I am accepting of them then I will give in to them and be ok that this is what I have become. I don't want to ever feel for one second that this will continue, this is a blimp in my life where I had to deal with something but is not even close to who I am. I refuse to settle into the fact that I might be a person with lower energy or someone who doesn't feel good. Fuck that, the treatments are almost over and I will be on my path to have full energy again and to the health I am use to! The only thing I have to keep reminding myself is to not overdo it right out of the gate because knowing me, I will bust out like I think I am 20 years old again fall flat on my face, pick myself up realize how stupid it was to do that. Its ok though because I have enough people around me to also tell me how stupid it is and brush me off so I can keep going.
As I sit here and write on my off week of this cycle's round 2 of chemotherapy, the brain fog is again lifting where I am starting to think like myself again for a couple days before they hit me again. The chemo I am doing now are the last steps in this year long "battle" of kicking cancer's ass. To me the feelings that I anticipated having joy, elation, a huge feeling of accomplishment and relief are not anything close to the emotions brewing around inside me. The word battle is used so often in referring to the struggles cancer brings and what it takes to get through it. When I think of the word battle, I think of an intense exertion of energy in a somewhat chaotic fight where the victor is left standing. Last June, that's what I thought I would be doing. I was ready for battle, my army was set, a plan was made, my game face was on and I was going to kick some ass!! Eleven months later and that is the furthest thing from the truth, if I had to hold that energy level this entire time I would have been down for the count for sure. In my experience it has almost been a combination of a well planned out stealth mission with a marathoner's mind set. I have had to pace myself every step of the way, not getting too far ahead of myself and being very mindful after getting through each obstacle there were still many more ahead. Like climbing a mountain, getting to the top and instead of the beautiful view there is another mountain. Yet where I am now is the last mountain and over the next couple weeks I will slowly be making my way to the top to see the beautiful view. This is where the confusing mix of emotions are setting in because as my marathon of strategic planning is coming to an end and I am realizing that the finish line is like the very top of the highest mountain, there is the very real fact that after my moment of celebration I have to figure out how the hell to get back down. After my last treatment I will have my weeks of healing and then.....what???? I shut down my entire life for a year now - how do I put that back together? Nothing is where I left if, life happens and things have moved on, as they very well should, without me. I am starting over in so many was and I have no clue where to begin.
I have given up so much control and have really relied on so many others to get me through the months of challenges. I have gotten up every morning with the goal of just getting through the day. With a stage 4 diagnosis my goal was just simply to be here and get through the treatment. Live - just live. Even though the treatment and plan are still in action, the tone is very different, the flurry of activity at my doctor appointments have calmed down. I am not meeting with other surgeons and trying to wrap my mind around what they have come up with to deal with what is going on inside me. What is going on inside me? I look in the mirror and see the scars left on my body, I lay in bed at night with my thoughts and can feel the scars there too. I am now approaching the time where I will take the different and new me and try and figure out what my life is now. I am the same in many way but so different in many more, what is important to me, how I look at life, and the path I thought my life was going in are no where close to what I thought a year ago.
Making a plan for the next steps of healing and moving forward in reality is not how I want it to be. Ideally it would be great to set my date to start working again, start the projects that have been put on hold and assume that I will be able to do all of the things I did before this journey started. The reality is I have no clue what my energy will be like and when I will be ready to pull off a full work day, how physically my surgeries have impacted me in my "normal" life and how not over extending myself too quickly. Will it be weeks, months, a year? All I can do, like all of my treatment, is to take one step at a time. Going down a mountain does not seem as daunting as the climb up but I also don't want to assume it is easy and slip, tumble down and hit the ground. With all I have learned from what I was given, the priorities I realized I never focused on, I want to take each step mindfully and respecting myself as I go.
In saying all this, I also am worried, knowing me, I have a feeling that the shit might hit the fan. I have always been the type of person that usually keeps it together, I think rationally, make educated decisions and am pretty calm. I am also the type of person, that, every once in awhile, that all goes down the tubes. Tamara gets a phone call or text to grab the bottle of Bailey's and get to my house while I have a bit of a mental break down, Becca gets a phone call as I am driving home with me in tears on how I can't handle some random thing I wasn't expecting, or we end up in Megan's bar in her basement and I think drinking rye straight up on the rocks is a good idea on a Wednesday because the week just sucked! Usually after these errors in judgement I shake off the headache they usually cause and back to rational ways. These events are an every couple of months thing, after non stop work days, added stress from an event I am running, or when the kids are just driving me crazy or going through a "faze", when I feel overwhelmed and just need a bit of a break. I can't imagine what my bad decision self will do once my energy comes back from this situation - I feel it stirring inside me, that uneasy, frustrated, somethings gotta give feeling. I feel like the clarity I will have might overwhelm me, with the realization of what I actually just did this last year, how close I could have been to not be here. I don't think I have actually wrapped my mind around that at all.
I am happy that all of this is coming up now and that I am working through it before my treatment has ended. I am usually pretty down and out the week after I get chemo and maybe I can use some of that time to reflect and organize my thoughts to the fact that this marathon might not be over as soon as I think it will be.
I know a lot of people consider the "C" word a horrible word, but cancer to me has been a horrible "C" word - far worse than any other you might be thinking of. Chemotherapy is also a "C" word I am not that fond of. Way back in June when I had no clue what the path ahead was holding for me I had no gauge of what treatment felt like or what I would be going through. There is so much in the news and media slamming this treatment and honestly until you are sitting on the other side of a diagnosis you have no say in how you feel about the topic - that's my opinion anyways. All I knew was that I had two kids that I wanted to see grow up and had an oncologist that I literally trusted with my life. Now in saying all of that, this was not something that I was looking forward to for even a second. The morning I woke up for my first treatment, I felt the struggle between mind and body pushing myself to get into the car and go. There are so many different types of chemotherapy and everyone handles it so differently that a side effect list is really ineffective because it could be all, it could be none or somewhere in between. I had a very aggressive treatment and I felt like I could have added to the side effect list. Apparently when you cut me open and put me back together I bounce back pretty good, this is not true with chemo. It did a number on me and I didn't function very well at all. As I got hooked up for my first treatment and was handed some pills that were to help with nausea, I noticed other patients talking and laughing with the person that brought them. There was a lady beside me that was on her last treatment that had her family there talking about the lunch they were all going out to to celebrate. My mind relaxed a little and as I looked at Becca, my mom and my sister and felt like we would have a nice visit over the next four hours. About 20 minutes after the nurse left I started to feel sweaty and nauseous. It's all in my head I thought, look at everyone else sitting up perfectly fine, I am just nervous and I just have to not focus on it. Becca looked at me kinda funny as I was trying to follow along in the conversation, "Are you ok?" she asked. No, no I wasn't. "I think I'm going to be sick," people move pretty fast when you tell them you are going to throw up. I ended up not throwing up, but the nurse came back over and checked me out giving me that little football pill as they call it to calm down the nausea. Usually people don't feel overly sick on this kind, she said. Well, what I have learned is with this mop of red hair on my head, is that I am not usual. I have been called complicated as they avoid using the word difficult by most of my doctors. Each treatment was the same while I was at the hospital getting my treatment and the days after had their own challenges. Vaporizing my cannabis and using the oil helped for treatments two and three but the week after treatment was still hard. The week following my first treatment I had a friend stop by to see how I was doing - he was talking to me and my brain was so foggy I didn't know what he was saying. Becca came out to stay with me one weekend and I felt horrible because I was in bed most of the day. I went out to lay on the couch to be involved in what her and my daughter were talking about. I have a clear memory of her talking to me and I couldn't make out what she was saying. I could hear her voice but it was just sounds to me, no words. I don't know if I was just that tired or if the chemo brain fog was that bad. I just went back to bed to try and sleep it off. Another bizarre thing that would happen when I was at treatment was, I would slur my words and I couldn't make sentences. It was like I was drunk and knew what I was trying to say but my mouth was not having it. As I look back over what I can remember, I am anxious to be starting again in a little over a week and fretting over what I am going to feel like this time. The treatment I will be getting is different, less aggressive and one less medication but all the fears are still there. As my last scan shows there is no cancer that they can see, these treatments are to deal with what they might not be able to see. There are some people that opt out but I feel like I have done everything I can do to get rid of this stupid fucking cancer up to this point why would I not do what I can to make sure it is gone! I have talked it over with my support team and the plan is to take one treatment at a time and assess after each one making sure the pros out weigh the cons. I think because I went into it not knowing what to expect the first time, it was actually easier than going into this now knowing. My hair has started to grow back, I am starting to feel good again and I, for whatever reason, feel like in some way it's a backwards step. I have been "strong", whatever that really means, for so many months that I am second guessing myself that I can be strong again throughout this. I can see the light at the end of the tunnel and hope that bell I get to ring is at the end of this step. I have warned everyone including the nurses at the cancer centre that I might not be ringing it as much as pulling it off the wall. If not, Melinda bought me the perfect gift for Christmas - a poop emoji pinata that I will be beating the shit out of at my Fuck Cancer party!!! Each step of this journey has been a mind trip and this one isn't any different. I always find that the limbo weeks leading up to the next step is the hardest - instead of being able to deal with something, I am left to my own devices and given time to think. I am a over thinker so that usually doesn't help when I have down time. I know when this next steps starts, I will deal with what is handed to me and again have the support every step of the way.
June 20th was the first day I started my journey back to health, I felt like I was thrown into the bottom of a very large pit and I just had to start climbing. No instructions, just climb and hope to hell I can make it out. I know in a lot of my other posts I have mentioned the "plan" that my doctors put together for me, the treatment I have had, procedures that they have done and four surgeries. Between each one of them has been limited time to heal, but yet I had to and quickly. I made it my job to stay as healthy as possible and be in my best condition going into every step. Before my first chemotherapy treatment I had visions of resting, exercising and eating well, everything I had been doing and have known my entire life to be "healthy". That all went out the fucking window as I was scarfing down a burger and fries on June 21st on my way home from the hospital after being sick all night and going in for hydration. I was so hungry and I just didn't give a shit. I had set this high standard that was clearly not realistic. Even though I have rested, exercised and eaten healthy, it has been so much more than I ever expected. The ups and downs have been a roller coaster for my mind, body and soul.
Each part has been so different and I have had to learn to deal with something new at every turn. Keeping in a good head space is a constant battle as well because of the pain, sleep deprivation and being hungry when I couldn't eat. As wonderful as my doctors are, their "plan" has not been easy on me and my body has been put through the ringer over and over again. I am writing this one week after my right lung resection and ileostomy reversal where I reflect over how many times I have been in the state I am in right now.
Usually coming out of surgery I am flying high, I feel great, relieved and very tired. Megan and Melinda have both watched me put on a little post op show where I don't exactly remember what I said to them but I know I made them laugh. The first night I usually sleep very well, even this last time when I spent the night in recovery due to lack of beds. The lights were on, it was very loud and the only thing that separated me from the rest of the room was a curtain that I am not sure was even closed. I was just so exhausted it didn't matter. The second and third day for me is a little rough, usually this is when the pain starts creeping in and with the other 3 surgeries I was given some type of pain medication which made me sick too. That is why this last time I opted out of everything but the freezing medication in the epidural which didn't really work anyways. Day two is also when I started planning my hospital escape - I just hate being in there. I mean I appreciate beyond words what they have done for me, but the beeping, noises and uncomfortable bed drive me insane. This is where my lack of patience kicks in. Every other night for me in the hospital is a night I don't sleep, I squirm around, constantly adjust the bed up and down while heavy signing so anyone in the room with me clearly understands how annoyed I am. I have convinced myself that being aggravated and annoyed is not a state I should be in to heal so home would be a better place for me to be.
The day I get home is amazing, as soon as the car pulls onto my road and into my driveway I am happy! I come in the door and I have a complete sense of calm, this is when the real healing can begin. The food in my fridge and cupboards are real, they have flavor, I know where it has come from, my bed is so comfortable, soft and warm, I am so excited to crawl in pull up the covers and be in my own little world. Who ever has brought me home and is staying with me putters around the house doing who knows what and I don't even care. All my girls have stayed with me enough they know where everything is and usually have everything organised better than I do. Then there is my tub, my wonderful large soaker tub in my en-suite bathroom, or as I like to refer to it, my little piece of heaven. I actually fantasize about it when I am in the hospital. There is no better feeling than soaking in the hot water and having my body just totally relax and let go of everything that just happened to me. I usually sleep really well the first night home after my bath and in my comfy bed.
Day five to seven however are always a struggle, reality starts to hit about what just happened to me. I start to assess my body, the bruises from my IV's, marks and scratches on me from surgery, and I just start wondering what the hell did they do to me. There are haunting feelings in the back of my mind somewhere because I am sure my body and mind know what happened while I was under but I can't remember. I feel like my mind is scrabbling to make sense of the fact that I am still alive and how being cut open and pieces of me being taken out didn't kill me. Which is truly unbelievable to me every time I think about it. I can also feel my mind scrabbling to send messages to parts that aren't there anymore and trying to figure out how to work again in the "new" way they have put me back together. Healing also takes a lot of energy so I am foggy, the way that I have come to describe it is that my personality is gone. I am void, blank, lackluster, vacant, and I just really don't care. That is so unlike me, I am usually laughing, talkative, opinionated and social. I am in my house coat or sweats for days, my newly grown hair is sticking straight up, I have no make up on and I am on the couch with the TV on or playing on my phone. I don't want to see anyone, talk to anyone and want to shut out the world.
The first surgery, my liver resection, this really bothered me. I had never felt as weak as I did in those couple of days and even though it was only days it felt like forever when I was in it. Tamara came over to check on me and I pushed myself to go to the kitchen to have tea and get out of my bed. I am not an overly emotional person but I feel like Tamara has a "spidey sense" of when I need her and just shows up at the right time. She asked me how I was, just a general question, but we both knew she meant it's time to let it out. I had been trying to be strong and deal with all of these new feelings and the experience of the first surgery. I paused to try and calmly explain what I was feeling but what came out was an over abundance of pent up emotion that I don't even think I knew was there. "I don't think I can do this" I cried, tears running down my face, "this is too much". I just kept blurting out simple sentences through my tears, putting my head down on the counter top of my kitchen island because I didn't have the energy to hold it up no matter how hard I tried. After my chemo, radiation and surgery number one I felt like three more and more treatments was something I would never get through. I broke in that moment, I was back in the bottom of the pit with the sinking feeling that I'm not getting out of this. She rubbed my back as tears rolled down here face and she listen to me whisper over and over "I just can't". Tamara then positioned herself across from me and held my hand shifting my arm that was under my forehead enough that I had to raise my head and look up at her. She looked at me like we were the only two people in the world, no kids, family or friends were a part of this moment just her and I. Her words were very simple and to the point, not pushy or overwhelming, "yes you can" she calmly stated, "you can do this, you have to". She squeezed my hand and then hugged me and I just let go. As my tears started to slow down I felt a smile come on my face, here is my dear dear friend who loves me, I have my best friends, my parents, my kids, my community who love me and she gave that back to me in that moment. I posted the following post on Facebook that night:
"I have always been the type of girl that can stand on my own two feet, problem solve for solutions and make my own path when I've needed to. Strength as a woman is very important to me. There are so many takes on what being a strong women means and my personal opinions of my own life has meant different things at different times. Weakness I knew was something I didn't like. To be weak in my mind brought thoughts of helplessness, disappointment and made me feel like I wasn't being true to myself. As I have gone through this cancer fight I have kept that thought in my head, be strong, fight hard, don't give up! And to be honest it wears on you because you lose sight of what that strength is. As my energy has gone down and I am recovering from surgery where walking the length of my driveway today was a giant feat, all the lines blur as to what weakness and strength are and they can be one and the same. I have struggled with watching my friends and family do everyday tasks for me because I can't get out of bed. Holding me up after surgery so I could take simple steps side to side. Watching my body change to a frail weak frame. It's in these times where I question myself and get down on myself, that I have lost my strength, that I have become a weak person and where do I go from here. Until tonight laying in bed and contemplating how to be strong I just let go. I let go and became weak, I allowed myself to be frail, let the tears out, not expect so much of myself in a time where there isn't a lot to give. And that's where it was, my strength. It was under all my worry of being weak. I can be weak. It's ok, I can let go of everything and have a moment with my weakness where I can be sad, scared, tired and know I can't do what I was able to do 4 months ago and it's ok. I have wonderful people in my life to be strong for me in moments where I can't. I have the love and prayers of my community asking for strength for me when I need it to be there and now I know I have those moments where I can give up my strength for the weakness I have never let in before. In time I know everyday tasks will become mine again and I will be back to myself when I look in the mirror but today I am weak and that's ok."
Ever since that moment I just give in to the feelings, I let it out if I need to, I allow myself the downtime and I don't beat myself up over the fact that some days I am just "Not Feeling It" (in a chicken accent). These moments are also where the healing is. Incisions heal together within a couple days, muscles in a couple weeks, bruises fade away but my mind and soul usually take closer to a month to be put back together, everyday getting better and better until one day I wake up and I am completely me again. I can't believe that my last surgery is done and the day I wake up this time feeling like me I can just stay that way, I can carry all I have learned to hopefully be a better me but me all the same. At the start of this journey the word heal meant nothing to what it means to me today. There is so much more to it and allowing myself to heal in all ways makes me feel like a more well rounded person. Mind, body and soul are all connected if not one and if I exclude one of them none of them heal the way they should. I have tried to find balance since my rock bottom moment and have honestly felt better because of it. The scars on my body are not the only scars I will have through out the rest of my life but scars will fade with time and even make me stronger.
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.