Asking for help is not something My Husband or I do very well. We are lucky people who have many opportunities others do not, and are grateful for the abundance that we already felt we had in our lives! We both felt a sense of guilt and shame over asking for any kind of help throughout the last year, as we tried our hardest to navigate this journey.
I have come to realize that I can’t make it to the other side of this journey now, without help. The next chapter is going to be the hardest yet.
I was told at my last appointment that I have no other option for survival but to have a bone marrow transplant. We have found a bone marrow match (YES!!??) and anticipate it happening in the early spring.
This is a risky procedure with the possibility of a host of complications. Due to the high dose chemo and radiation to prepare for the transplant, and the risk of infection and rejection, I have been told the approximate average survival rate one year after the procedure is 50%.
Those odds are not something that rest easy with me, but I have talked with many transplant survivors who have given me great hope that I can take those terrifying odds, and achieve a positive outcome. That is what I intend to do.
Experiencing this perpetual roller coaster has been emotional and has often led me to turn inward as I tried to cope with something that seemed so big and scary. I stopped replying to a lot of messages, started living in the moment, and made it really hard for my friends to plan things with me because I just wasn’t ‘up for it’.
The truth, that I couldn’t admit then but admit to you all now is:
What I actually wasn’t up for, was spending time with the people I loved most and not feeling present, because all I could think about in my head was what was happening in my life. That my world felt like it was falling apart. I suddenly felt like I couldn’t relate to people and I hated feeling like a bad friend.
I worried about talking about what I was going through, I didn’t want to share my deep thoughts about spirituality and mortality.
I didn’t want to share my fear because I don’t want other people to have to carry the weight of that energy. I didn’t want people to perceive my fears as negativity. I didn’t want to scare people or seem morbid. I didn’t want to be the centre of attention and get treated differently. I often felt even more alone in those situations, like people couldn’t or wouldn’t understand.
I never really gave people a chance to though, because I felt a huge amount of guilt and shame for being sick and pushed people away. That was stupid. It made me behave stupidly, and it ends now. It’s time to get real. It’s time to accept help, and I don’t just mean financially.
I would like to fill the remainder of my time before my Bone Marrow transplant with joy. With feelings of contentment and peace. With friends and family. With craft projects, movies on Netflix, finishing my novel, and hugs.
I don’t feel a huge sense of purpose in my life right now and I float around the house often feeling lost. I also am dealing with a lot of fatigue and mental exhaustion from the low counts and non-stop chugging in my brain that keeps me awake most nights. This means that half the time when my friends message me to make plans, I’m so overwhelmed that I just ignore my phone. It’s not you, it’s me 😉
Moving forward, I promise to stop being such a butt and accept the abundance of love, support and friendship that exists within my world. I promise to give people the chance to understand and support me, even if it feels hard or messy or shameful.
Thank you for everything you have done to help me get to this point, and thank you in advance for all the help to come.
I would like to openly invite anyone who has asked how they can help, to check out the suggestions below:
1. Register for Onematch if you are 35 and under.
I was lucky enough to find a donor, but people still die all the time, waiting for a match. That has to stop. Being a Bone Marrow donor is not a complicated procedure, and it does not involved invasive surgery or extended time off work. In ONE day you can save someones life, with something that can be almost as simple as a blood transfusion, and go right back to work. You have the super power to save a life. Please use that super power.
2. If you are older than 35, please donate blood with Canadian Blood Services.
People suffering from Blood cancers and myeloproliferative disorders often require blood transfusions during the course of their treatments. Please consider donating.
3. Show up or send me details.
I find it hard to make plans these days and sometimes struggle to leave the house. If you want to visit or do something with me, I cordially invite you to do just that. Message myself, Bill Ashton, Cheryl Wallace or Mary Ashton to find out if I am home or free and just drop by or tell me where and when you’d like me to meet you. If you’re in the area, just drop by. If I am free, I am game.I don’t say no to much theses days, if the opportunity is right in front of me. If there’s a movie on Netflix you wanna watch? I’m game. Scrabble? I’m deadly good, beware. I might even put on pants for you. But sometimes I’ll just be in my pyjamas or housecoat. I hope that’s OK. I also hope it’s OK if sometimes I cry, or need a hug, or want to talk about things that aren’t all rainbows and butterflies. I promise if it’s too heavy for you, we can watch stand up comedy on Netflix to lighten the mood. I”m currently obsessed with Iliza Shlesinger 😉
4. Be Kind.
Complete a random act of kindness for a stranger or someone you love. Buy a coffee for the person in front of you, Bring some groceries to a person down on their luck. Bring more kindness and love into the world, because Love is the most important thing. Legit.
5. Use My Cancer Glasses
Cancer has given me this wonderful gift, of seeing the world through a pair of glasses that highlights beauty, wonder, and joy. They see even the smallest moments for the magic that they can hold. They see unlimited potential. Behind these glasses you see the best in people, the best in yourself, and most of the time they somehow hide all the grey, dark parts of the world that we don’t want to see. They even magnify the goodness. I don’t want the people I love to have to experience cancer just to wear these glasses. I encourage you to try to make a pair for yourself, slide them on, and stop to smell the roses. Enjoy playing make believe with a child. Watch the beauty in a sunset. Soak in all life has to offer, and be present in the moment. Life is a beautiful thing.
My sister was kind enough to start a Go Fund me for me, and I’m already blown away by people’s incredibly moving posts and selfless donations. I don’t really know what to say and have a hard time accepting this but, thank you. This will really help put a bit of my mind at ease, knowing my husband can come and visit me in the hospital without worrying so much. If you are hesitant to donate to a Go Fund Me Campaign, I encourage you to consider donating to Hearth Place Cancer Support Centre or The Canadian CML Network who both offer free groups and support services that have been very helpful to me.
Thank you so much to everyone in my life that has stepped up and surrounded me with this huge bubble of love and support over the last year. I couldn’t have gotten this far without out you all, and I am forever grateful for the help I continue to receive in this fight.
Much MUCH love <3 <3
*Originally Posted to Facebook