No matter how many activities I packed into today, time seemed to stand still. My heart raced and my mind was dizzy. I have been to yoga, taken kids to a bouncy house park and lunch and the quiet still creeps up on me. It is always there in the back of my head. The clock that is counting down to the inevitable. The injection, the scans, the return to the hospital. The wait.
This morning in yoga I was so wobbly and distracted. I tried my best to warrior on (see what I did with that pun there 😉 ) But I nearly knocked down the room with my giraffe legs that were so off balance in a headstand – thank you sweet Tannis for catching me and setting me straight.
I choked back tears during most of the class. “Set your intention for the day, week, month or year,” the instructor said.
What is my intention? Shit. For no cancer in my daughter? For my son to never be diagnosed? For no one else to have cancer? For no one else to have an eating disorder? For no one else to suffer? For unicorns to fall out of the sky and shit rainbows onto all of us so we no longer hurt. So my heart can stop hurting with anticipation for what is to come.
Tomorrow morning, Marjorie and I will load up and head to Wolfson Hospital for her nuclear injection. The injection is part of her MIBG (PET) Scan. It is the ‘glow worm’ test, as Jordan lovingly named it. The test lights up where the remaining cancer is. Our last scan in October, this injection caused her to spike a high fever and be overall miserable the whole night. I am praying there is less of a negative reaction this time.
Wednesday morning we will arrive at Wolfson at 10am for her scans. MIGB first, then her CT scan. Then HOME. You can bet I will be carrying my baby home as fast (and safely) as possible.
Jordan called me this morning and told me he was super anxious. I told him about yoga and how I was feeling the same. We choked back tears together over the phone and both carried on with our day of distractions. Every time I look at the clock I think to myself, “We will be done in 72-hours…48-hours…”
Our hearts seem to be aching more with this one. Or maybe it is because life has been blissfully normal since our last scan causing us to drag our heels upon re-entry into the cancer world. Marjorie is crawling EVERYWHERE and pulling up on EVERYTHING. She is a constant ham, making us laugh at all of her show pony tricks. Big brother Manning races to wake her up every morning. He loves her so very much, well, until she touches any of his trucks, which is daily. But he seems to forget within minutes and is back to making her giggle within minutes. Our daily life is so full of laughter and giggles, we put the Brady Bunch to shame. (Brady Bunch proof as evident in pictures below:)
So I get really angry when anything threatens our happy bubble, probably because I know too well what it feels like for your world to be shattered. My current mood is one of childish anger. I want to stomp my feet and tell the doctors ‘NO!’ We aren’t coming. I want to opt out. I want my friend, Leslie, to not be driving her daughter to St. Jude today. I want to opt out for them out too. No such luck.
Then I think back to when we were in the cancer trenches. My mood softens (slightly). I am so thankful we don’t live in and out of the hospital. I am so thankful we aren’t on round after round of chemo. I am so thankful Marjorie has a fuzzy head full of wild post-chemo hair. I. Am. Thankful. AND…I am angry – all at the same time. And that is okay.
I know my heart can handle it and I know that I would be doing a disservice to my tiny fighter if I didn’t honor every piece of emotion in my heart. The next few days will be up and down. They will be filled with laughter and tears and stress AND they will pass by. Our life will return to normal. We will get back the ordinary bliss.
I feel really grateful God gave me this super sensitive heart, a heart that feels everything and feels for everyone. It is such a gift that I treasure. I am grateful recovery has taught me to feel and honor my own heart and not put it behind anyone else. I take care of myself so I can take care of others.
As I march back into the cancer/scan battle, I carry you with me. My family, friends, prayer warriors and most of all my fellow recovery warriors. I probably think of you and your families more than anyone else in this journey.
My heart breaks for those eating disorder mommas, who feel as though they are on an island. Help and support is so hard to come by, not to mention people who understand. When we hear a child has cancer, our hearts break and we run to our friends offering prayers, suppers and support of any kind. We send gifts, coordinate meals on wheels and share Caring Bridge and prayer links with everyone online.
When we hear a loved one has an eating disorder or goes to treatment, we whisper and aren’t sure what to do. There are no Caring Bridge sites set up or Meals on Wheel Calendars created. We want to help, but don’t want to intrude. The shame that comes with mental illness is the elephant in the room that no one can seem to move.
Here’s how we move that elephant: talk to them. Reach out to their mommas. Offer a meal, a hug, a carpool. They deserve a meal, a shoulder to cry on and a friend to sit with them in the hurt. They are still a person with a family who has a disease that is no different than cancer. As you offer Marjorie and me prayers, offer a prayer to a friend or family member with a mental illness. They need and deserve a prayer too.
Imagine if I went to the hospital tomorrow, only to be told by my insurance that Marjorie’s cancer wasn’t “that bad” so she should go home. You all would be outraged – rightfully so. That scenario plays out hundreds (if not thousands) of times a day. I just received a text the other day from a brave momma who is FIGHTING her own insurance so that her daughter can receive the treatment she desperately needs and deserves.
You may not understand eating disorders, but chances are, you don’t understand cancer either. And that’s okay. We don’t have to fully understand to empathize, love and send our prayers and support.
An illness is an illness, whether it is mental or physical. The brain is a part of the body, as Senator Ted Kennedy says. It is not a mythical place. It is part of us, the most important part of us. Marjorie’s cancer is no different than the countless others who are hurting from mental illness. Don’t be afraid to ask questions. You aren’t intruding, it means you care.
To my fellow cancer mommas, eating disorder mommas and every momma and person in between I am so thankful to have you in my life. The love you send helps ease my ‘scanxiety’ for I know I have an army behind me. Thank you for the constant prayers, love and support. We embrace and cherish each and every one and send it right back to you. I will keep you updated on our Marjorie as this week progresses on.
A
nd PLEASE don’t forget to vote for Loving Imperfection as the Best Health Blog of 2015. It takes ONE SECOND and does not post to your Facebook, I promise! ONLY THREE DAYS LEFT! First place gets $1,000, which will all go to Southern Smash. Help us raise money and continue our efforts to spread positive body image and eating disorder education! Thank you for your continued love and support – I send it all right back to you <3
Jannette
January 18, 2016 at 9:15 pmThank you, again, for your realness, depth, caring, care seeking/giving pieces that share parts of you to help from within to around the globe. I live every bit of my day, whether in my clinical live, my advocacy life, my family/friend life &/or my spiritual/faith based grounding intertwined. Your writing – like your speaking – goes deeply to speak to my mind, body heart & soul.. Survivor, Mom, Daughter, Friend, Counselor, Advocate, Holy Spirit grounded/driven in spite of brokenness … Prayers for strength, peace, hope, grounding & healing..
Kimberly Weiner-Higdon
January 19, 2016 at 2:41 pmI must begin first as a mother, prayers are with you and your family that God will heal and at the same time comfort the weary. Secondly, I must share my daughter’s brief story. She is 16 y.o. and for one and 1/2 years have been battling with eating disorder, anorexia and purging. She has experienced triumphs and set backs, the pattern showing with each setback the hole seems to be deeper and darker. In 2014, I noticed a few behaviors that for me described textbook criteria for an eating disorder and while I didn’t want to alarm her or call it something it may not have been. I began expressing a concern in her relationship with food and it seemed to be turning to an unhealthy status. After 3 months of denial, she confessed that yes, she might have an eating disorder. Fast forwarding throughout 2015 numerous hospitalizations, formed an excellent outpatient team to see her weekly, and finally, when she gets medically unstable a quick visit to the ER. After emptying all savings that my husband and I have been working on for the past 20 years to provide treatments for her; to no avail. However, on this day at this time she has followed her meal plan as far as I know and she is back attending school on a regular daily basis which was not a reality last semester. I feel a little relief but I am always waiting for the ball to drop in my lap, weighted with these horrible habits of this horrible disease. I guess what I am asking is how did your parents and extended family learn to be of support and not excuses to restrict or purge? Because I feel like if I don’t do what she says she will stop eating or purge. I kind of feel hostage and I am her mother! God’s comfort on you and your children.