September 26th, 2014
| Caregiver: Rhabdomyosarcoma
After cancer treatment ends, a lot of people expect life to go back to "normal." But when Emily's son finished treatment, she found herself more stressed and anxious than ever before. Read more to find out how she coped.
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 smile. 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 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 has 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. 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.
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. 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.
Were you surprised by life after cancer?
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