Choose Hope.

You have a choice to make,” my oncologist said last week. “We can wait another 3 months, do another set of MRI’s and then make a decision, or we can treat aggressively now, knowing that tumors in NF2 patients are known to grow over time.

Let’s be real. Neither of these options sounded great;

  1. Wait for the tumors to grow, and then react.
  2. Proactively treat tumors that will inevitably grow.

I also knew I had a third option; 3. I could do nothing. I was just starting to feel ‘normal’ again after being diagnosed with NF2, and having 2 back to back brain surgeries. I missed life before my diagnosis. 

But, pretending as though the tumors are not there will not make them disappear. Doing nothing will not give me more time with my family.

So, I quietly dismissed the idea of doing nothing, resolving myself to do something, and listened as my oncologist explained the pros and cons associated with Hydroxyurea.

It is a pill form of chemotherapy that I can take at home, without needing intravenous infusions. It works by slowing down rapidly growing cells, which could potentially keep all of my tumors at bay.

I asked my oncologist, “if it were you, which option would you choose?” He replied, “I would start taking it immediately.

So, after a lot of research, and lengthy conversations with my medical team, I’m choosing to fight. I choose hope.

My oncologist put the order in for the chemo pills, and a heavy duty anti-nausea medication.

chemo

I will begin treatment today, June 24th, exactly 1 year from the day I was hospitalized for seizures and diagnosed with NF2.

I will need to go in for lab work once a week to be sure my body is strong enough to withstand the medication. The drug can make me nauseous, lose the little hair I have left, lower my already weakened immune system, make me feel extremely tired, and experience flu-like symptoms.

But, more importantly, it gives me a chance to fight my tumors and diagnosis while still continuing to live my life; I can still hold my kids, walk my dog, drive a car, go to work, and get in the ocean when we go back to the beach.

So many things have been controlled by NF2 over the past year; but choosing hope over fear is something I am very much in control of.

My kids may see me THROW up, but they will never see me GIVE up.

I don’t know yet what this chapter looks like, but this is still my story, and it is not over yet. 

 

3 thoughts on “Choose Hope.”

  1. Please keep us updated on how this pill goes. My daughter is 17 tomorrow and has lost her hearing, but has not had brain surgery yet. Her tumors have doubled in size in 4 years and we are just waiting for them to say it is time for surgery. Some days I feel so helpless and wonder if we are doing all we can. So for now we will go shopping tomorrow for her birthday. Thanks for sharing your journey. I will be praying for you.

    Dee Ann

    Sent from my iPhone

    >

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  2. My daughter is going on the chemo pill but, her insurance is not wanting to pay for it. She was to starting it this coming Monday. Do have any advise?? She has 4 tumors in stage 3

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  3. I am you have read many things over the years on how to deal with tumors and I’m so happy that you chose Hope. I have two surgery (5 years ago) due to tumor that invaded my skull. I don’t have NF2, but it’s malignant.

    I read a lot about what’s to eat and what tumors fed on…. it’s sugar and fried/grilled foods. If that’s you like, you may want to consider the following. It takes time to get use to… but I think I helped me.

    I have significantly reduced my intake of any sugar (rice, candy, alcohol, coffee) and consumed more natural and organic fruits and vegetables. For example, my wife made me a 16 oz of fruit, vegetables and fresh squizzed orange juice drink every morning for breakfast before going to work for 5 years now. Get a real good blender and do not filter out the fiber.

    If you drink coffee, drink it black….don’t drink soda at all… it will help to improve your immune system while you are being treated.

    Basically, you don’t feed the tumors by starving them of sugar and remove the one already there by treatment. Hope this helps….feel free to remove or pass on to others as you see fit.

    Another thing I did was getting job less stressful since stress weaken your immune system as well…and meditation will help to deal with stress.

    My prayers to you and your family.

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