Moving the Finish Line

Today was to be my final big dose of weekly chemotherapy, an infusion of three drugs, Panitumumab, Paclitaxel and Carboplatin, followed by 2 additional weekly infusions of more limited and more physically manageable cocktails. A week from now I would have been 2 “easier” steps closer to the finish line of the clinical trial. I’d been anticipating this milestone for weeks. I repeatedly told myself I could make it through the debilitating fatigue, annoying digestive issues, burning stomach pain, reflux, cracked fingers, scaly, itchy, dry skin, splitting lips, facial and upper body rashes, bone and muscle pain, nose bleeds, and intermittent nausea for just three more weeks...But, the finish line has moved again.

If cancer treatment teaches me anything, it’s that predictability and certainty are about as guaranteed as a Vegas slot machine. Depositing any hard-earned hope and faith in an expected outcome is always a gamble. Chemo side-effects, like the house, are always favored to win.

Low platelets, low magnesium, and anemia are just some of the side-effects that caused today’s chemotherapy cancellation. I had commented to my sister, Jenny, a few days prior that I didn’t know how my body could endure any more of the necessary but cytotoxic drugs that are killing not only the cancer, but all my rapidly dividing cells. I had begun to feel absolutely toxic. And, the fatigue that has gripped me is like none I have ever experienced. Some days it comes in steady waves. Other days it is all-pervasive. Lately, I struggle to keep my eyes open. Fortunately, I can nap, so I do. The exhaustion, however, is unresolved by sleep.

I was scheduled to first meet with my oncologist, Dr. Valero, today. “How are you?” he asked as he entered the room and began to wash his hands. “Well…really tired,” I started. “You’re getting pretty beat up,” he added at the same time. Yes, that’s exactly how I feel and look…Beat up. “We’re going to give you the week off,” Dr. Valero said. I was definitely more relieved than disappointed, but couldn’t help somewhat regret another delay. I have been so wholly invested in the “just 2 more easier weeks after today,” payoff, I had to take a moment to collect myself; I cry very easily when my resources are this low. Tonight I remind myself, “That’s what happens when you play the slots. Stop counting on your (lab) numbers always lining up.” A week off will allow my body to strengthen and recover from the assault. Dr. Valero assured me that many patients in this clinical trial demonstrate the same pattern – i.e., the need for a week off following 3 consecutive weeks of treatment.

So, my last big dose of the clinical trial phase is rescheduled for next Thursday, September 28th…given my lab numbers are in range. Standard of care chemo, barring any additional delays, will begin in 5 weeks and be completed sometime in early 2018. Neal will finally be here next week, and have his first opportunity to attend chemo with me. I look forward to showing him the world-renowned MD Anderson Hospital and medical center. It is such an impressive facility, and I feel so proud and honored to have the privilege to be treated there.

 

Meanwhile, I’m not sure what I’ll do with myself during my week off. I really don’t have the energy to do much, and must still be conscientious about infection, and now bleeding risks. I fantasize about spending time on the water, taking leisurely walks along the Shoreacres bayfront where I grew up. Or, maybe even a short trip to Galveston…But, with temperatures still up in the mid 80’s, I can’t spend too much time outdoors as sun exposure and sweating exacerbate the Panitumumab rash.

It can be challenging for me to spend time in the homes of others, even family. I feel as if I have an obligation to at least try to be present and interactive. No one has ever made me feel that way, I do it to myself. And, I have a strange relationship with food right now. I have little to no appetite. If asked what I want to eat, I have NO idea, and it can overwhelm me to have to decide. When I explained this to my sweet brother, Carl, he replied, “I know what to do. I’ve got it covered.” He brought several mild dishes from his favorite Indian food restaurant, which I ate for 2 days!

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With brother Carl

When a meal is laid out in front of me, I’ll readily consume it. Last night, for example, sister, Sally Jo, and I were invited over to Steve and Marisa Effenson’s home for Rosh Hashanah dinner. Catered from Ziggy and Kenny’s New York Delicatessen, the food was delicious…I almost declined the invitation at the last minute due to my fatigue, but resolved to go despite how badly I felt. I knew everyone would understand if I needed to leave. I was so happy I rallied. Spending that time with family and friends was nourishing to body and soul.

 

I’ve been receiving acupuncture to address the dyspepsia, fatigue and sleep, and it’s been helpful. I appreciate the non-pharmaceutical intervention, as I am averse to adding any additional drugs, and their potential side-effects, to my body.

 

Finally, I want to share an experience I had riding the bus last week. Scheduled for early morning chemotherapy I was abandoned by my Uber driver while waiting in front of the apartment. I quickly walked to the next street over to catch the 6:30 am bus to MD Anderson. As I boarded, a little out of breath and aware of my “cancer patient” appearance, I took the first seat next to two elementary-aged children on their way to school. Their young mother sat directly across from them. As the bus bounced along Greenbriar for several blocks I peered out the side windows, mildly annoyed that Uber had charged me $5.00 for the cancellation (which I corrected), my dyspeptic stomach causing discomfort, which likely showed on my face. As we approached a stop, I turned my head forward. The mother across the aisle made certain to make eye contact with me, smiled, and asked with genuine interest, “How are you doing?” I nodded and said, “I’m hanging in there,” as we began moving again. Holding my gaze she said loudly and sincerely over the din of the rumbling bus, “You look BEAUTIFUL!” I teared up, put my hand on my heart and and mouthed “Thank you, thank you.” As the bus roared down the street I looked out the side window again to shield the children from my crying face. I wish I’d had the wherewithal to hug her before they exited the bus…  “Take care,” she said as she ushered her children out the door.

That young woman getting her kids to school on public transportation before the sun had even risen made it a point to reach out to me. I did not look “beautiful” that morning in the superficial sense of the word…but, she surely made me believe it for a moment.

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Her simple act of human kindness affirmed what I know in my heart, but too often forget…

There really are more good than bad people in this world.

 

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13 Responses to Moving the Finish Line

  1. Robbie says:

    I’m wondering why there was no “Kleenex warning” with this post. Still here and still praying for you. Thank you for continuing to share your journey, so in awe of your strength and courage and so happy you have the awesome angels that God has surrounded you with. I know you are feeling that warmth and love with every post I read. I always look forward to reading your updates. I totally agree, still good people aka “Angels among us” in the world, I hope you realize people put you at the top of that list! Thank you for reminding us that it’s the people and not the things in our lives that are most important along with the small daily events that we often take for granted. Better days coming!

    Like

    • Jill Flyer says:

      Thank you, Robbie, for your beautiful message. The work you do on behalf of our furry friends never ceases to impress me. It so touches my heart.❤️ You are such a tireless advocate for some of our most vulnerable four-legged society members! I so appreciate your support and encouragement.

      Like

      • Robbie says:

        Appreciate that more than you know! Wish there were more people like you who appreciate the undying gratitude and love from an old grey muzzled fur kid and less of the “disposable mentality” kind. Baby steps. 😉 Lifting you up in prayer today and thanking you again for the inspiration and hope you give to so many! P.S. Your comment needed a “LOVE” button, please look into it. 🙂

        Like

  2. Julie says:

    Jill- thinking of you today and every day!! You are always in my thoughts and prayers. I feel a little bit like I’m there with you after reading your fabulously “vivid” account of your daily life. Stay strong and get back to Califirnia as soon as possible!! Love ya, Julie

    Like

    • Jill Flyer says:

      Hi Julie! So good to hear from you! I think about you and your sweet family often, and imagine how busy you all are with work, school, sports, family obligations, etc. I hope this finds you all well…I look forward to a homecoming coffee klatch with you and Carine at Stonehaus in the near future! All my love to you and the entire Gardhouse family…❤️

      Like

  3. Linda Squires says:

    Jill,
    Your writing is focused and inspiring.
    Your attitude is courageous and empowering.
    You’re beautiful inside and out – believe it!
    Sorry for the delay in your treatment, but it sounds like it was for the best.
    Love, Linda

    Liked by 1 person

    • Jill Flyer says:

      Thank you, Linda, for always offering such sweet and kind support. Yes, it really was for the best…I’m feeling a little bit stronger today. Taking my magnesium pills, so maybe that’s helping? Lots of sleep and rest. Eating a little better, too. Neal will be here this Wednesday…Really looking forward to it…Hope this finds you and Jim well. All my love to you both. ❤️

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  4. Jill, do not kid yourself, you do look beautiful. Love that look with the scarf! And………Keep on slaying! Mike

    Liked by 1 person

    • Jill Flyer says:

      Michael Dixon, you always succeed at making my day with your determined efforts to do so! Thank you, my friend! A few weeks ago Patrick and I entered MDA on the Sunday following Harvey. A guard was having people sign in, so we got in line. When I approached the desk he said, “You’re a patient…you can go on in.” As we walked away, I asked Patrick, tongue-in-cheek, “How does HE know I’m a patient?” We decided it was because they were not holding zombie auditions at MDA that day!! lol…I really do think I’d be a shoo in as an extra! True “beauty” does not begin on the outside…that is for sure!

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  5. Maria Miranda says:

    Hi Jill! This is Maria Miranda I don’t have the privilege to know you well but Neal has been describing how wonderful wife and mother you are.I just want to tell you how beautiful and strong woman you are!Keep fighting and never give up,always believe that miracles happens.Always keep your faith.God will be with you every second and every day until you return home with your family ! You are always in my prayers!! Keep fighting beautiful lady!!!

    Liked by 1 person

    • Jill Flyer says:

      Oh, Maria…You are the glue that holds everything and everyone together! We love and appreciate you so much! ❤️ Thank you for being there for me…and for Neal. Knowing how much he counts and relies on you, and that you never let him down, is truly a gift beyond measure. G-d’s blessings are so abundant, and I am grateful everyday for the excellent medical care, friends and family that are seeing me, Neal, Ethan and Ben through this. You are such a major part of the CA team! I appreciate your prayers and kindness more than I can say…

      And, thank you for sharing with me that Neal has spoken so fondly of me…Sometimes I have to wonder who he’d save first in a fire… Me or Buddy!! lol…just kidding!! 😉😉😉

      I hope Neal is bringing you plenty of lemons from our tree!

      Like

  6. Elena Flyer says:

    I wish I could be there with you. Take this week off of chemo to relax and gain strength. Maybe the old man will give me a vacation one of these days. Shana Tova dear sis. 💗

    Liked by 1 person

    • Jill Flyer says:

      Thank you, dear sister! I don’t think I’m imagining it, but I do believe I feel a little stronger today already! You are one of the busiest people I know, Elena…You never stop!! Your ceaseless service to other people and animals is so admirable and impressive…I don’t know where you get your energy!

      Meanwhile, I’ve already finished a bag of the biscotti you sent! Strange how I have NO appetite for much of anything else…But, when I see those sitting on the kitchen counter, out comes the tea or milk…and voila, I’m eating them!! And, I have NO guilt or shame about it either!! lol…😊😄

      Much love to you all…And, Shana Tovah! ❤️

      Like

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