“Show them what it means to be brave in the face of difficulties; let them see you accomplishing tasks that you would rather not do at all. Teach them that it is okay to be sad sometimes, but that “sad” doesn’t mean defeated…The way in which you handle your battles can provide them with a gleaming suit of armor for theirs.” Vicki Girard

Waiting for my doctor to return from Canada, Jim and I have been compiling a list of strategies. I really should say that my rock star husband comes up with the strategies and I just pass them off as if they are mine. This way, my doctors think I am a fake doctor. Honestly, they do listen. When I feel strongly about the next steps, I tend to re-phrase the medical lingo and add my compassionate twist. My focus has always been (about everything) being proactive instead of reactive. I am a planner and an organizer! Just ask anyone! With my recent blood tests, my tumor marker seems to be back on the rise. I am thankful that it hasn’t gone sky high, but has definitely stopped the sharp decline. My doctor did reduce the dosage because of my mouth sores and hand and foot syndrome. I cannot imagine it being any worse as far as my feet go. This has become just one more thing for me to plan. To walk or not to walk, that is the constant question. Besides being a reptile and slightly uncomfortable (okay some days worse than others), I am finding that the handicap placard comes in handy. The fewer steps I take during the visits to Walgreens to pick up drugs or the grocery will help for an evening of standing for a performance or a walk that I pledged to do with Alex (even though he ran the “walk”).

So,my ride continues. This news came on the day that I had to take Alex to an award dinner that he received for his community service. Things do work in strange ways. I really thought to myself, how can I be there for Alex when my heart hurts and my damn feet hurt from this chemo that may not be working. The award is for kids who make a difference in our community and is named for Savannah, an angel who continues to make a difference in many lives with her legacy for organic living. We were seated at the table with another award winner, a boy of 15 who is a cancer warrior. I kept hearing him speak to his mother in Dutch (our favorite 2nd language-okay, we are biased because of family!). I asked them about where they had lived in Holland and we talked about all things Dutch. Then, this boy told me the drugs he took and how he was in a wheelchair during treatment. Yes, he was on the same drug that I am taking. YIKES! He kept making me laugh about his treatment and people reacting to his cancer. He has an incredible attitude. His message gave me strength to be in the moment. Alex enjoyed the entire evening. Many people had congratulated me for being Aliso Viejo Mom of the year since there was an article in the local website for our city. I laughed and told some that people better not mess with the mom of the year. Although as usual, some people still have the same delightful demeanor of their EV (emotional vampire-NESS) that you would have to be Bella from the Twilight books to withstand the exposure.

Alex really is son of the year. I have always looked online for someone who is blogging or has some award winning comments about what it is to be a child of a parent who has cancer. I have found nothing. No one can understand it, but many do show compassion and help him to succeed in every way they possibly can. As the saying goes, it does take a village. My village watches over Alex and is there to hold his hand, listen to him, make him laugh, let him sit in silence, catch a ball, get dirty, and just be a boy without thinking about all that weighs heavily on his shoulders. There isn’t a comparison or guide book as each child is so unique in how they will react. He hears too much and knows too much and I can only tell him that we will be okay. We will be okay because he has a village. I appreciate every person who has helped in even the slightest way.  Any small thing taken off my “to do” list helps me in more ways than you can imagine. I am always reminded that you cannot change people. There are those who cannot get “it” or can barely understand in the slightest what we go through on a day to day basis. Yes, these are the ones who tell me of a woman who died from cancer  or that being a child of cancer is like being a child of divorce. I can tell you right now if you asked Alex, he would take divorce if it meant  his mom never would have cancer again. I cannot blame someone for not understanding, but I can still be in the shock and awe of someone not having the compassion that I expect. Tilt your head, if you want. I don’t care because at least it shows me that you are trying. I have enough challenges every day living in my clogs (not shoes since they hurt my feet and yes, I have to look like a complete dork and wear socks. Thanks to all of you for your kindness who said I can get away with this “look”). This ride is frustrating and annoying ( a real big annoyance). This is my life and I have no other options, but to continue my cancer job even though the pay sucks and the vacation time is not nearly enough.

Tomorrow, I will talk to my doctor for my 3 options. I want to increase my dosage back to the old dosage unless my tumor marker doubles. If it doubles on Thursday, then I need another chemo choice. There are options to add other drugs to this chemo. Plus, with the big ASCO (American Society of Clinical Oncologist) conference just days away, there is hope of new drugs or new trials.

So, I am on countdown to chemo again on the 6th. This means that I will be doing everything and anything fun during the days preceding the closet day. Yes, this means I will freeze my feet with ice, so I can be out an about. If you see me and I have a strange look on my face, just know that my lizard feet are frozen so I will be increasing my lack of coordination in the walking department. Yes, I was never that coordinated to begin with…so watch out.

 

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3 Responses to ““Show them what it means to be brave in the face of difficulties; let them see you accomplishing tasks that you would rather not do at all. Teach them that it is okay to be sad sometimes, but that “sad” doesn’t mean defeated…The way in which you handle your battles can provide them with a gleaming suit of armor for theirs.” Vicki Girard”

  1. margie Says:

    Hi Joanie,
    Congrats on mom of the year, and I’m so proud of Alex and his award!!! Hang in cousin. I think of you everyday, and am sending you my love, prayers and healing thoughts. Just got back from the chemo closet. I’ll have to send you an email to provide you with some funny stories. Love, Margie

  2. Kelli Clffford Says:

    Joanie,
    I saw that you were mom of the year! Well deserved, congrats! Have you thought of suggesting that Alex be the guy that starts the blog for kids with parents that have cancer?? I bet a lot of kids would love a place to share, he’s a great writer and it would give him an outlet!
    Sending lots of love and very positive thoughts to you!!! You are a hero to me and help me to keep it all in perspective.
    God Bless!
    Love,
    Kelli

    • Joanie Says:

      Kelli, I had been thinking about this idea for Alex since my mom gave me a diary at his age. He already started his blog and when he publishes, I will make sure to copy you.

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