hope

Note: if you haven’t read about my medical journey, you might want to catch up here and here first. Pics below are mostly from our recent trip visiting family in Colorado. 

Sitting out on a 95-degree patio with the misters blowing down upon us, dining on tilapia with fig sauce, I was asked, “Are you hopeful?”

I’ve been asked a lot of questions throughout this journey, but this one only twice. The first by my mom; the second by her good friend, my dining companion this particular evening. She and her husband were visiting Scottsdale and I, hopeful gal that I am, was in town visiting the Mayo Clinic in a hail-Mary pass to obtain answers on the ever-present pain in my ear. They offered to take me out to dinner.

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The question takes me aback and it doesn’t, because I’m always hopeful, but at times I lose my bearings and break down in a hospital bathroom somewhere. Who wouldn’t? Unless you’re devoid of emotion the grind of daily pain, and the grind of doctor after doctor telling you they don’t know what’s wrong or how to fix it, wears on you. It’s been wearing on me undeniably.

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But am I hopeful? Yes. I’m the type of person who never gives up. If this doctor doesn’t work I try the next (probably having a breakdown in a bathroom, or a closet, or in the arms of my husband in between). I was hoping the doctors here in Arizona would be the last. But even here–the proverbial Holy Grail of medical care–is stumped.

In between bites of tilapia I explained that yes, I am hopeful, despite each loss and gain along the way (there have been more losses than gains). What I didn’t say was that if I lose hope, I have nothing. I have no choice but to keep hoping, and wishing, and dreaming, and praying to whatever deity I believe in (I’m still deciding), because if I stop, and give up, and surrender to this pain, it will take me under. I have no choice but to keep going, if not only for myself, but for my family.

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So am I still hopeful? Yes and no. I’m hopeful that there will be an answer somehow, someday. I’m no longer hopeful that the answer will come quickly. I’m no longer hopeful that one particular doctor will be the answer. It might need to be a combination of ideas from three, four, five doctors that I pick and choose from like items off a shelf.

Here in the grand old US-of-A I feel that the age-old “pill for every ill” mantra still stands tall. Countless doctors have prescribed me countless medications, some doing more harm than good. I believe in pharmaceuticals and modern medicine and I don’t. We’ve come so far in helping cancer patients, HIV, MS, and many other diseases once thought terminal, by pharmaceuticals and other modern therapies.

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But for someone like me, who doesn’t have one specific illness or a diagnosis, pills aren’t always the answer. I can control some of my symptoms with them, but they often provide some awful side effects that make them unworthy of ingesting. For some people hope can come in the form of a pill, or radiation, or chemotherapy. But not for me. I often wish it were the case. Take one three times a day and you’ll be cured. How easy would that be?

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Am I hopeful? Some days yes, some days no, and somewhere I’m in between. But what I have learned is that this journey isn’t up to the doctors anymore. It’s up to me. What’s most unfortunate in American medicine is that you have to be your own advocate. You have to fight for what you need. You have to ask the right questions. Doctors won’t communicate with each other–you have to communicate for them with documentation. And if you aren’t being listened to, you have to be a pain in the ass. Call and visit and book appointments until someone does listen, or have someone with great hutzpah do this for you. Bring a friend or a relative to your appointments and give them your list of questions, too. That way if you break down, or lose your train of thought, or aren’t being listened to, they can jump in for you.

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Years ago (though it seems painfully like yesterday) after my mom underwent her first surgery for stage 4 uteran cancer, I slept by her bed for a week in the hospital, leaving only during the day to shower and change clothes at my college apartment. The nurses would tell me I didn’t have to stay, and my family would tell me we could split the night shift, but I wouldn’t budge. It was a silent agreement between she and I: I won’t leave you, and you won’t die on me.

The other reason? If she needed something in the middle of the night and pressed the call button, the nurses took five, ten, sometimes fifteen or twenty minutes to come. So I would hop out of bed and go harass them to come attend to her. If you can’t be your own advocate, you have to have someone else be.

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My Mom, right, and Charlie the sad cowgirl, left.

My mother is a true survivor, physically and mentally. She beat the son of a bitch called cancer and has been free and clear for several years. She never lost hope, even if she faltered here and there; it was always lingering in her body, fighting off the disease along with her. I try to be like her, even though I’m not staring something as daunting as death in the face. How do you not lose hope when the situation looks grim? All I need to do is go ask my mom. She and my dad have been my greatest advocates since the day I was born.

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I ran across this Post Secret today, a site I read religiously every Sunday morning. It reminded me not only to count my blessings—I have so very many, including two healthy, happy children, a husband who provides me emotional support, a shoulder to cry on, and (among many other wonderful things) great health insurance through his job. What do I (though I wouldn’t call us wealthy) have to worry about? In the grand scheme of things, very little.

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I worry about getting better so my kids have the mommy they deserve. I worry that my husband will forever have to prop me up when I fall down. I worry that there will be no cure—that I will go through life being forever allergic to noise. I worry that I will lose hope.

But am I hopeful today? Right now? Yes. Ask me again tomorrow.

xo

Jenny

 

Comments

  1. Melissa says:

    You’re amazing-truly. Your girls, Dave, your family & friends are lucky to have you in our lives. We’ll be hopeful when you can’t. xox

  2. Thank you for the honest update, Rainy Day Gal. Your authenticity is a beautiful thing, and I continue to pray for a positive outcome to your hope.

  3. Hi Jenny,

    I just wanted to say what a pleasure it was to meet you and how amazing you are (and I loved your little girls, your house, Nudge, and of course the delish treats!). I accidentally deleted your email so figured this would be a safe bet to get a message to you!.

    My hubby and I fell in love with Seattle and want to bring our kids back! What a lovely city you live in!

    Love,
    Sherri

    • Sherri,

      It was lovely to meet you as well! Thanks for coming and I’m so glad you had a nice time in our city. We do love it, and when you come back please do visit again. Let’s keep in touch? I’ll email you.

      Jenny

  4. Heidi Bruch says:

    Jenny,

    Something about your story-maybe it is just how sweet you are and how your writing makes me ache for you-has pulled me in. My mom has suffered from MS for more than 30 years. It is debilitating. The pain is isolating. I can empathize. Having family in the medical community and also having had a very sick infant, I know first hand that you have to be your own advocate. The medical world is amazing, but you have to find your way. Speak until someone listens, don’t take no as an answer. Don’t let them tell you how you feel. You know. It’s ok to feel sorry for yourself. It’s ok to cry. You have been dealt a really crappy card. I am hopeful for you. If there is no “cure,”- I know there will be a way for you to live comfortably. I am sorry it is taking so long. It sounds like you have an amazing family-two sweet littles and a pretty darn fantastic attitude. I’ll be checking in on your blog and thinking of you.

    • Heidi,

      Thank you so much. I really appreciate your support. I’m so bummed I won’t be a part of the co-op community this year–I’ll miss all the smiling faces. I know you’ll be a wonderful chair.

      You’re exactly right; you have to fight for your own needs. I’m so sorry to hear about your mom. She is lucky to have such a caring daughter and wonderful little granddaughters surrounding her. I’ve found family help especially important as of late.

      I feel that as I take a step forward I take two back, but my little gals are the reason I keep going. They have to have the mom they used to have, and I’ll do whatever it takes to get there.

      Thanks for the sweet note and for checking in–xo Jenny

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