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My Thoughts as a Cancer Mama

Nobody Told Me Life AFTER Cancer would be so Hard!

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My son’s last day of chemo was a Sunday. I watched as the very last drop of poison dripped into my baby’s IV line, and then we were officially discharged from our very last hospital stay. He got out of bed, put on his batman cape and walked out of the Cancer ward. Some of the nurses clapped and kids cheered, others just looked and smiled. My little bald 2 year old stopped and turned to wave like he was the King of England. The nurses cried and there were hugs all around. I had a goofy smile on my face…but it wasn’t real.

I was more scared than ever. For 48 weeks, I had dreamed of this day, the day that my son’s chemotherapy would be done. It was my light at the end of my cancer horror tunnel. I had dreamed of this day ever since Griffin was diagnosed with Rhabdomyosarcoma behind his eye when he was 22 months old. We survived 48 weeks of chemo, 25 radiation treatments directly to his face, 11 blood transfusions, neuropathy (so bad that he still has trouble walking)  and had no use of his thumbs and fingers. He had mass amounts of pokes, prods, xrays, blood draws, etc. I cuddled him as his hair slowly fell out. I rubbed his back as he would sleep through the pain. Even though I did not have cancer myself, this Cancer fight was just as much mine as it was my son’s.And now it was here. The end of our Cancer fight! So why was I so terrified?

I felt lost. I felt abandoned, I felt alone.

When you start your treatments, your cancer team gives you a piece of paper with your timelines. Everyone is different but most people have a basic idea when and how long treatments are going to be, when your MRIs and CT scans are, when radiation is scheduled, etc. You are on a strict schedule of clinic visits and then in-patient time. Your day is filled with medication schedules, feeding pump schedules, outpatient therapy schedules. But once you hear that word, “remission,” you are suddenly dropped like a hot potato.

We went from clinic visits at least twice a week (sometimes three) plus once a month, a full week of treatment admitted to the hospital ward. You had access to all your doctors, to child life, to physio, OT, dietitians, plus nurses to answer all questions. Yesterday you were a cancer patient, a team of 6 doctors at your beck and call. And today? You are told to transition back under your family doctor’s care. WHAT? My family doctor had no clue about the meds my kid is on or the effects it has on him. How long do all these meds stay in his system? How long do we live like hermits, avoiding germs and germy people? When can my life go back to normal? What if he gets a cough? How long do we keep his port in? Why do I feel like I’ve been abandoned? There is no schedule for my life now! What do I do? I was the only one in charge of his care now. If he gets sick, it’s on me, I make the decisions. I did not like this at all.

I could not believe how high my stress and anxiety got at this point.

I was warrior mama up until then, beating cancer down with my bare hands. And then I just became a pile of mush. I think I finally let myself FEEL everything I had been bottling up over the past year. Now that my son was cancer free, there was time for me to deal, to feel, to cry. I was processing the fact that my baby could have died. I never really let myself think about that fact before. I had to suppress that fact just to get through the day. Now I have to deal with the fact that my boy with never be the same — he has scars that will be with him his entire life. And I have to deal with the fact that I will never be the same either. I have seen the dark side of cancer.

It was at this low point when I had to choose if I wanted to keep fighting or let cancer take over my life.

I chose not to be a victim anymore.

I was going to control my journey and take my life back. That is when I started these “Cancer Mama” blogs. At first it was just a place to vent, a place to barf all my feelings down in print. (That is why there is no editing) It helps me to share my experiences. I hope it helps others to read that they are not alone.

Nobody told me how hard ENDING cancer treatment would be. No one talks about the feelings AFTER remission. I expected that once October came around, I would get out of my PJs, put on my dress clothes and head back to work with a smile on my face and a spring in my step. I didn’t go back to work until the following April. I spent a lot of time at my therapist’s office (THANK YOU AMY!) who was able to hear my woes and turn them into healthy living and healing. It’s easy to stay in a funk —the cancer cloud can hang onto you, and over you, forever. But don’t let it win Mamas! Climb that mountain and don’t be a victim anymore – it’s not easy, but you aren’t alone.

My Thoughts as a Cancer Mama

And then Today Happens…

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You think you are going along ok…you think you have everything under control, you think today is just another day in the life of a cancer mama. Then a series of events happens, to where I’m sitting in a stall in the bathroom at work trying to cry silently so no one will hear me. The more you try to cry quietly, the louder it gets. FYI lolA very dear friend a work lost her husband to cancer a number of years ago. She still wears her wedding band and talks about him like it was yesterday. We have very different views on cancer. She looks at it like a curse, like the black spot of death had attacked her family and took her husband. And she is right of course. I just SEE it differently, yes, cancer sucks, but its also brought my family together, my bond with my son, hubby and family is stronger than ever! I guess maybe, if our path was different, maybe I would have a different outlook as well?

But lately, she has been very hard on herself, I can see that she is struggling in her daily life. I can see that she is struggling to see the good. Time is not going to heal this woman’s wounds. Neither is a good cuppa tea (as my Nanny would say) This woman needs more than I can give her and I just don’t know what it is. Everyday I sit beside her and I see her shrinking, slowly slipping away, looking more and more sad and older. The stress of cancer has taken its toll on this beautiful woman. She wears her battle scars across her face. I see the pain, the heartache and the loss. I weep for her, I weep for all the mothers, wives, sisters, and aunts would have lost a loved one, its not fair. It will never be fair. This woman will never be the same, her heart will never be healed, but I hope one day she will find the strength deep down inside and start to pick up the pieces of her broken heart. Its a painful process. You spend all that time, building a wall up, to protect yourself from the pain, but its really just a numbing effect. You are not really healing if you don’t. You just build up a scab that is harder and more painful to rip off when you are ready to deal with it. Yes, it hurts, yes its not easy but in the long run, its better for you!!!

I wish I had a secret formula to fix people like this. The broken hearted. Cancer victims that were never sick but will never recover from thier dance with cancer. I wish I could wave my magic wand and *poof* she is happy again, she smiles without it looking painful. Her smile would reach her eyes and her soul. Now her smile is just a mask to get her through her day.

Days like this hurt my heart, like an actual painful throb that I can feel. I mourn for my friend that is hurting and there is nothing I can do. I mourn for our innocence that is lost. I mourn for her happiness that looks so very far away. I hate that she never learned anything from her husband’s cancer fight, like how strong she is, or what an amazing mother and wife she is. She only sees the negative. She didn’t bond with other cancer wives or families, she doesn’t participate in the amazing walks and fundraisers that bring like minded cancer fighters together…

Keep Calm and Remember.All I can do is listen as she shares her stories, her worries and her troubles. I have nothing to help, this is a fight she has to do herself. But I can be here for her as she battles, its just up to her to WANT to do it!!!

Sigh…some days like this I wish I was a Wonder Woman, able to take everyone’s troubles and fix. Oh hum, I’m just a regular wife, mother and Cancer fighter that works a full time job and writes this very odd blog while sitting in the stall in her work washroom. Odd, i know, but it works! heheheehe

My Thoughts as a Cancer Mama

Holidays-It’s the little things

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appreciateI’ve never been really huge into the whole holiday thing. I love getting together with family and friends and the feasts are always wonderful, but other than that, holidays could come a go and I really wouldn’t care.

Then cancer hit, rocked my world, now I count my blessings each holiday we have with our little boy. We came so close to losing him, I can’t help to cry each holiday dinner we sit down as a family and raise our glasses to other year.

Easter/Ostara just passed, we didn’t do much of anything special, we got together with my parents a couple of times over the weekend for dinners. But Marty, Griffin and I had a relatively “lazy” weekend at home. We washed all the cars and trucks and cleaned them out (There is that lost mitten! Ooo, that french fry looks several months old!) Griffin was all into helping us, he even vaccuumed out the back seat! This time last year, he couldn’t climb into the car, his fingers were not strong enough to hold a pencil, nevermind the vaccuumm hose…so many big changes in his life! With a lot of hard work, so many things are going back to normal!

I’m beginning to relax a little, letting myself ENJOY these moments we do have. We are so very lucky that our dance with cancer was short n sweet. I intend to never dance that dance again!!!

So a very Happy Easter/Ostara/Spring to everyone!

Cheers!

My Thoughts as a Cancer Mama

Pondering, Rainy Day Doom

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The snow has finally melted here in Ontario Canada, its been a very long winter for us. Today its a rainy day, lots of grey clouds, fog and rain. A cool wind whips your hair around your face as you dash to your car, avoiding puddles in the empty parking lot. I sit in my car enjoying the thunderous spattering noise of rain hitting the roof and windsheild. It’s a calming sound for me, it clears my head. It’s been a very busy couple of weeks for me. I organized our local Daffodil campaign for the Canadian Cancer Society, then I worked a lot of shifts, on top of my full time job. I’m physically and mentally exhausted. It’s not just selling a few pins. It’s standing on your feet for hours, smiling, but you also hear story after story of how cancer has affected people’s lives. My heart reaches out to each and every person that shares their story. Lots of hugs are exchanged, whispers of good luck, as they hustle along doing thier errends. Some are survivors, some lost a loved one, some are still fighting and then others are angry. They think that a cure as been found but drug companies are keeping the secret to make more money. I have trouble shaking the lasting effects of these people. It must be so hard living a life filled with so much negativity and hate. And then to feel the need to spread your negativity to an innocent volunteer who has nothing to do with drug companies? sigh…I take a deep breath, breathing in the glorious spring air and the smell of rain. It’s wonderful. I feel my body relaxing and my mind starts to wander. I remember sitting in this car, in the parking lot of Ronald McDonald House when Griffin was at his sickest. I remember the rain and the gloom and sitting there balling my eyes out. I retreated to my car to cry by myself. I remember thinking I couldn’t do this anymore. I remember questioning why me? Why my child? Why my little family? I remember wishing that I could take Griffin’s cancer, I would sacrifice my own life for his in a heartbeat. Why my only little baby? Why cancer? Why so much sickness and pain? I sat in that car for a very long time, hoping the rain would wash me away with it…

Fast forward 2 years and look at us now? I’m still tired and exhausted but for different reasons (thank gawd) I made it through to the other side. The doom and gloom only lasts for a little while, then it passes by, leaving everything washed clean and fresh.

As horrid as your cancer journey seems at the moment, just know, this too will pass. Your journey will continue to march forward. Some of you may lose your child, some may have complications that they have to live with the the rest of thier lives, but we move on, we survive, we conquer.

I sit back in my car seat and smile. No gloomy day can keep me down. I no longer cry in the rain. I now smile and jump in the puddles.

Don’t let the dark cloud consume you ladies, look for the silver lining, if there isn’t one? The cloud will move on, taking with it the cold and the rain and the wind, rainbows will follow, from heaven or from earth, our children are our blessings!

Loss

Let us Talk about Loss

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© Joseph Cortes
Early Walk © Joseph Cortes

When it comes to Cancer Kids, we must talk about the loss we all feel when we lose one. It hurts the whole community. I can only talk from an outsider’s point of view. Our son Griffin is still with us, but we have gone to a lot of funerals of his Cancer Buddies over the years. Yes, they are not my children, but it still hurts, almost like they ARE my kids. And I have a loss of innocence. I have survivors guilt. Why did my child live and theirs did not??? So I share with you my thoughts on child death:

Words of Advice From a Cancer Mama

When speaking to a recently grieved parent, please do not say things like, “It was his time”. We are talking about a child here. This was not his time. No parent should have to bury a child. A child that dies? Its not his time. Cancer stole his time…

Other things to avoid? Talk like, “God has a plan” or “God only gives you as much as you can handle”. When a parent loses a child, its a very trying time for them and they could be questioning their faith. Phrases like these do not help. I would HATE any God that did that too me, no matter the religion.

I know you are trying to relate, but please refrain from comparing a parent’s loss of a child to a dog or a Grandma. They are not the same. And it can hurt, a lot if you think that they are. This loss is a hole, their child has been ripped from them after a long hard journey. Be their safe place to fall, be a shoulder to cry on, be the supportive hand to hold. Do not be the jerk who thought that Fluffy’s passing was the same as a child. It can be insulting and hurtful.

Please DO ask if the parent would like to hear a story about your favourite moment with their child. (Some parents will not want to hear anything, others will love it, so its always best to ask) Tell a funny or touching story, how you will be remembering their child. Or tell them a story about what reminds you of their kid. Maybe every time you see a penny on the ground, or a cloud shaped like a dog, the colour lime green or whatever. It lets that parent know that you a are thinking of their child all the time and that they are still alive in your heart.

Do dedicate something for the family. A bench or tree in your favourite park, a song on the radio, anything to touch their hearts. I love to see people walking/raising money in honour of these little ones we have lost. The more money we can raise, the closer we will get to a cure. Let the family know what you are doing to honour their family.

Do listen to the parents. See what wording they are comfortable using when they are talking about their child. Some people do not like the word “loss”. To quote a Cancer Mama, “I did not ‘lose’ my child, I know exactly where he is! Right were cancer left him!” Some don’t like to refer to them as angels or their fight as a battle and they “lost” the fight. They tried their very hardest, saying they lost their fight makes them sound like losers! Some families refer to them in the present tense, others start talking in the past tense right away. So I would recommend listening closely to how the family is referring to the child and follow their lead. Every family is different, it can be very tricky but its worth it!

Sometimes there are no words…

Let that sink in for a minute.  No words. You being there, present, is words enough.  Sometimes silence is worth a thousand meaningless conversations.

Don’t be afraid to smile and even laugh. Yes, this is a horrid time. But its like a roller coaster, their world is crashing in around them, and then someone reminds you of a hilarious story about your cancer kid, you can’t help but to laugh right along.

Please don’t be silent, be vacant or disappear. They are still your friend or family. Don’t be afraid to reach out. Please call, take them for a walk, dip your feet in the sand together, connect, please cook food, please hold a hand or give a hug. Everyone needs a hug sometimes…

Please hug your babies tight tonight, even if they are just in your hearts.

XOX

Many thanks to the Cancer Mamas that helped me out on this one. I talked to some of you directly, and then some were just experience. But thank you for sharing your baby with me, even for just a little while. They will live forever in my heart…

A very special RIP to Kerry’s child (name withheld), Rowan, Austin, Matteo, Alivia and Kelsey.

Helpful Links

Helpful Cancer Links

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I HAD CANCER.com-is an amazing site for fighters, survivors and Care Givers to get together, ask questions and get support from others that “get it” from all around the world. Its an amazing resource for knowledge but also kinship. They also feature some of my blogs now and then! 🙂

OPACC-Ontario Parents Advocating for Children with Cancer

Canadian Cancer Society-Info, support services, Wheels of hope, screening and prevention, ways to volunteer

Camp Trillium-As we are a camp for children with cancer, our programs are tailored for all abilities whenever possible. We also have medical staff on the premises whenever camp is in session.

Ronald McDonald House-Hamilton-A home away from home for families with a child in the hospital.

Childhood Cancer Canada -Is an amazing resource! Check out their “Empower Packs” and scholarships and everything in-between!

My Thoughts as a Cancer Mama

The Blessings of Cancer

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Blessings of Cancer

Whhhhhhhhaaaaaat? You say? BLESSINGS of Cancer? What are you taking about???

Welllll, for me, and my story, as much as I HATE Cancer, I also love it. I know, take a deep breath, let me explain.

Before Cancer, I took life for granted, yes I was happy, but I didn’t really LOOK at what I had. My beautiful little family, amazing friends, supportive family and employer. I had my dream house, family living close, my best friend as my Husband, I was done school and just coasting through life. Cancer hit and threw everything into a tailspin. Now, that I’m on the other side, I appricate all that I have. I take nothing for granted. Life seems sweeter somehow. Music is more meaningful, a hug is emotional, a night in on the couch with my hubby is bliss! I laugh more, I smile at all that is beautiful. Once your life is ripped for you and you work HARD to but the pieces back together, you savour every moment you’ve got left.

Throughout our Cancer journey we have met up with some amazing people. We have attached ourselves to a couple of other cancer families. These families I care for like they are as close as family. I love to hear updates about how thier kids are doing and despite our busy sch’s, we meet up several times a year. The first family is of Miss S (privacy) She is Griffin’s girlfriend. She is a year older and had lukemia. They met in chemo clinic. She is the sweetest, cutest, sassiest girl you can meet! She bosses Griffin around, and Griffin totally does waht she says! LOL They hold hands and love the swings and compares snacks. Miss S only ate potatoes for a year. She has moved onto include bacon as well. Her mother is thrilled. Speaking of her Mother, We will called her Amanda (not her real name) is the most caring, most compassionate woman I have EVER met! We tend to gab for hours upon hours, we have cried together and laughed together and most of all, raised toddlers who kicked cancer’s butt together. One time, we invited Miss S and Amanda over for an afteroon playdate, Amanda and I yakked all afternoon and into the evening, The kids played with each other and my Mum was busy cutting out letters and numbers and chickens out of paper. Miss S was very impressed she was able to do this. My Dad ended up ordering from a chicken place to feed us and we kept on chatting! They ended up leaving at bedtime as our children were starting to fall asleep! LOL We invite this family to pretty much everything we do because an outing with Miss S is like a day without sunshine! LOL I value my friendship with Amanda and love being able to talk to her about life, but also about Cancer. She parents a lot like we do so we seem to be on the same page regarding our children as well as cancer. They are a great family. We are blassed to have met them and bonded over our clinic times!

Next is Mr Adam (name changed) he is a teenaged boy. Griffin first encountered him in the open chemo clinic. There is a “teenager” area of our clinic where the same children are not supposed to roam. Well, tell at 2 year old that, it just makes them want to go there more. Usually we were there very early in the morning so as you can imagine, the teens were sleepy, grumpy and feeling like crap. Adam stood out because he actually looked you in the eye and smiled when Griffin would come near him! Griffin would come up behind Adam’s Chair and stick his head in between the 2 seats to see waht kind of eletronics Adam had this week. Well, then, one week, Adam was our roommate on the hospital ward. Adam was NOT feeling well, At all. For the the entire week stay, he was throwing up every couple of minutes. You would hear Blahhhhh (him puking) and then a very weak but polite, “excuse me” from behind the curtain. Then a mintues minutes later another Blahhhhh and then Adam would pipe up with a “sorry!” Oh my gawd, I would laugh my head off! What a sweet boy! He is throwing up a storm and he bothers to excuse himself? What a champ! So from then on, he was our “favourite” room mate for being so polite and cute! So Griffin and Adam had a cute little relationship from then on. On Griffin’s last in hospital chemo treatment, we were in a private room and Adam was beside us, he was too weak to get up but he wrote a note for griffin on a piece of paper for his Mum to write a saying on Griffin’s “congrats” poster on Griffin’s door. I’ll have to dig it out because its the most amazing quote ever…I will have to find it! Adam’s mother is an amazing example of Cancer mama WARRIOR! And an amazing woman in general. I love yakking to her too! Adam is such a sweet boy, he finished his treatments and sent Griffin a Xmas package last year that included one of those story books where you can record your voice so now Griffin has Adam reading him the sweetest little christmas book. It brings a tear to my eye everytime. Adam has recently relapsed with his cancer and is in the process of getting a bone marrow transplant from his brother. Our hearts and thoughts are with this family right now!

Next is Miss M, another chemo clinic buddy! Miss M and Griffin became buddies over thier mutual need for food during a steroid week. Griffin would steal her strawberries, Miss M would steal his crackers. They were buddies ever since! Again, from a wonderful family who we really enjoy doing stuff with. Miss M is usually the life of the Party, wearing a tutu and sparkley shoes pretty much at all times and loves to DANCE! Her hair has started to grow back (she is still in treatment) which makes her have this wild child look that totally suites her personality! She lives over an hour away but you can count on Miss M’s family showing up for events which are always fun!

Through facebook and emails, us Cancer Mamas (as I call us) have formed quite a pwerful and wonderful group that can reach out and rant or ask for help or a tip for a problem. Its actually quite amazing!!! I look to these Mamas for thier wisdom but also thier friendship. I actually cannot imagine my life without these people now. And I thank Cancer for bringing us together.

Throughout Griffin’s journey, we have come in contact with some really great stangers that became vital to our Cancer Fight! Linda (name changed) lost her husband to cancer years ago and her son had it too and now she works hard for the Canadian Cancer Society’s Relay For Life every year. We actually met her there. Griffin was still battling his cancer and I was crying on the side of the road. Linda picked me up and gave me a hug. And just held me for awhile…like my angel! She met us with us a couple of months later with gifts and cash and more hugs. She and her children are a blast, such a caring group of people! We are planning to get to gether soon to go to the aquarium with the kids! YAY! But she is an awesome example of someone whose life was ripped apart by cancer and instead of letting it ruin her, she stands tall, and fights everyday for a cure. She is my hero.

Within a week of Griffin’s diagnosis, a friend at work was very active about reaching out to community help for us. She was concerned abotu the cost of cancer. At the time I was very overwhelmed and totally did not pay attention to what she was saying (sorry J!) But thanks to her stubborness and plain old stepping over my head, she got in contact with Alivia’s Rainbows which is a FAB foundation her in Niagara Falls that directly supports cancer families with things that they need. They had lost thier daughter Alivia to cancer a couple of years before and this is how they honour thier daughters memory! How wonderful is that??? They came over one night, right before Xmas and dropped off SEVERAL gift cards for food and gas. I cried and cried. These people understood! And they were the first “cancer family” that we had come in contact with! I was desprete for information so it was wonderful to get the “inside scoop” and another cancer families input. I think they were surprised that I wanted to talk to them since they lost thier daughter, but I didn’t care, I was so glad to speak to them! Chantal & Craig have been amazing friends and our idols to look up to on our journey through cancer. One day I want to grow up to be like them! Strong, caring and amazing!!! They continued to support us on many levels. And we are now working hard to support thier cause! We will never be able to repay everything they gave to us, because its priceless but we try! Please check them out at www.aliviasrainbows.com/

Another amazing Cancer Family we came across was the crazy people at “Team Kelsey” Kelsey Hill lost her battle with a brain tumour and her supporters, all dressed in the brightest green you have EVER seen group together and move mountains! Her Mum Lana (and family) are very active in the cancer community, they raise money for the Ronald McDonald House and sponser Brain Tumour Kids in our community. Lana reaches out and touches each kid with her love and care and you can’t help but to desire to be part of Team Kelsey! Check them out at: http://www.teamkelsey.ca/

So in short, yes cancer sucks, but you can either let it consume you, or you can fight back!!! Don’t just sit in the corner and feel sorry for yourself, get up, talk to the people in clinic with you,