Home, Healing, and Houston Bound…Again

After 11 months of treatment for Inflammatory Breast Cancer at MD Anderson Cancer Center, it was with mixed emotions I departed Houston, Texas on May 4th, bound for my California home and the assumed resumption and reconciliation of a now unalterably fractured pre vs post-cancer life perspective. One year prior a fateful phone call had rocked my world, catapulting me back, reluctantly, to my childhood home and biological family. What if I spent a year away from my husband and sons only to die from this disease anyway? One year later I had developed a pronounced ambivalence to exiting the cocoon of comfort, love, support, healing, and life-saving people and places that had walked by my side, hand-in-hand down a rugged road to recovery.

The day prior I had had the honor and privilege of ringing the radiation bell of completion, surrounded by my team of radiation therapists and several of my ever-supportive family members. The event culminated a taxing, year-long multimodal treatment approach, including 4 types of neoadjuvant chemotherapy and participation in a clinical trial study designed to test “the safety and efficacy of the anti-EGFR antibody, Panitumumab,” a modified, radical mastectomy, including the removal of 22 lymph nodes, a serious post-surgical infection that hospitalized me for an additional week, and concluded with twice per day radiation treatments and physical therapy.

While celebratory for certain, a fleeting flashback to my disappointing pathology report, prognosis, recurrence/metastasis risk and looming decision over whether to continue treatment by participating in another investigational clinical trial requiring travel to Houston once per month for up to 2 years, threatened to intrude on this otherwise triumphal turning point. As I rang the bell with gusto and delight, I also harbored the knowledge that while I was done with this particular disease management approach, I would be returning to California with some unexpected, excess baggage. I had prayed for, and set my heart and mind on a pathologic complete response (pcr), but that was not to be my fortune. In that moment, however, I wanted to solely focus on how far I’d come, and how blessed I felt. Learning how to intercept optimism torpedos and thought trespassers, by “simply” living in the moment has been a longtime and likely lifetime endeavor. My ability to do so has improved, but still requires regular maintenance work.

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While not as taxing as chemotherapy or surgery, my radiation therapy protocol had required 2 treatments per day for 22 days, leaving me mildly fatigued and somewhat sore along my chest, shoulder and upper back.

radiation position

My skin held up very well during treatment, and despite some edema and the sensation of a slight sunburn, immediate side-effects were minimal. While my skin tightened, and would continue to do so upon my return home, physical therapy helped to mitigate radiation effects.

I remained in physical therapy in California until recently, and have slowly regained some mobility and flexibility. Multiple home projects I took on and completed around the house also served, I think, as a fruitful form of physical and emotional therapy. I can’t control what’s happening inside my body, but I can control my environment. I can’t fix my DNA, but I can fix everything else! Admittedly, I’ve been on a relentless “clean and repair mission” since my return home. Our 23 year old oven appears nearly new despite its heavy usage history, some of which remains an unsolved mystery during my absence….”Out, damned spot! Out, I say!”

In addition to restoring the ovens to pristine condition, I decluttered and donated a driveway full of unused/unneeded household items and clothing; repaired our computer (I can’t live without my Sonos music streaming system); researched, purchased and set up a wifi extender; detail cleaned the bedrooms, including the upstairs blinds and shutters; decontaminated, er “cleaned” Ethan’s bathroom, removed the caulk from his bathtub (Neal applied the new caulk, as I can’t draw a straight line to save my life); had Neal and Ethan dismantle our King-sized bed so I could clean every last inch, including the mattresses and box springs, then shampooed the carpet beneath it; painted a nightstand (stripped its hardware paint and refinished it, too); cleaned and stained the backyard fountains, replacing lights and installing new timers; cleaned the pergola; planted tomatoes, lettuces, and strawberries; deconstructed the BBQ grill, cleaned it and replaced broken parts; washed all the patio furniture; and cleaned and organized the garage. Professionals were called in to shampoo the carpets, clean the downstairs blinds, and complete the heavy-lifting, major yard work. Now that I’ve written it all down, it does seem a little um…ambitious? zealous?…maybe manic…?🤔 I don’t know…All I can say is, it all HAD to be done, and it had to be done THOROUGHLY and COMPLETELY before I could rest…😬

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So much for all the well-meaning admonitions to rest and recover. The only thing that obstructed my clean and repair obsession was fatigue, muscle aches, lymphedema concerns, and pesky, vital activities such as eating and sleeping. Plans I’d made in my head to take long walks on the beach, fit in some local travel, sleep late, return to yoga, reconnect with friends, take a class at Moorpark college, and read some new books were mostly put on hold while I was deployed on my clean and repair mission.

As the weeks passed, my skin continued to tighten, redden, darken and peel throughout the radiation field. But, within a few weeks, my skin began to look quite normal. I was fortunate to receive a type of radiation that allows patients “to receive higher, more effective doses of radiation while limiting damage to the healthy tissues and organs around it…[increasing the] chance for a cure and [lessening] the likelihood of side effects.” I cannot adequately express my deep appreciation for the care I received from my radiation oncology team; extra credit to the billing department representatives, Verna and Joy, who pursued with dogged determination, tact and tenacity the insurance pre-authorization required for Intensity-modulated Radiotherapy (IMRT). The insurance company’s inordinately long pre-authorization “review” had resulted in a maddening and frustrating delay, which led to scheduling the boost dose first, rather than at the end of my regular sessions – an atypical, but reasonable alternative to further delaying treatment. With imperturbable professionalism and the confidence that emanates from experience, the MD Anderson oncology team allayed my fears that treatment delay or type could have negative health ramifications, or postpone my trip home.

From my exceptional radiation oncologist, Dr. Wendy Woodard, to my radiation therapists, Thu Flores, Brandi Mejia, and Tutu Yakong, who carried out the sessions, and whose attention to detail, patience, encouragement, expertise, professionalism and concern for my comfort made the sessions infinitely easier, radiation treatment was a breeze compared to chemo and surgery. Music piped into the room eased my stress and provided an enjoyable distraction. I may have even sung and danced once or twice as I prepared to get on the table. Fortunately there’s no video evidence…

Stiffness, achy joints, sore muscles and fatigue are now chronic conditions, forcing rest and project postponement, as well as a nightly dose of Motrin. Upon rising after sleep, or any period of sitting, I move like pre-lubricated Tin Man.

Sleeping through the night would, no doubt, be restorative. And while I’ve made decent progress in controlling the former zzz’s zapper – my bladder – I still awaken at least once per night several times per week to either go to the restroom, or even worse, to cope with excruciating nerve pain. Think of the worst Charlie Horse you’ve ever experienced, then imagine the real horse, Charlie, standing on it…😫 Because the seizures usually begin in my joints, particularly in my left ankle, contorting my feet and shooting pain up my legs, I am unable to walk it off, or massage it out. I just have to wait in agony for the spasm to pass, assisted and comforted by Neal, who is too often awakened by my inadequate attempts to stifle my distress. Pain and discomfort in my shoulders, back, hips and ankles have me tossing and turning a great deal of the night. I initially believed the stiffness and achy joints were due to my nearly constant physical activity, and being on my feet too long. But, I recently discovered that these symptoms are side-effects of Letrozole, the hormonal therapy medicine I take to “lower the amount of estrogen in the body, [and] block the action of estrogen on breast cancer cells.” Exercise✅, non-steroidal anti-inflammatories✅, hydration✅, and meditation✅ reportedly help. Still, no relief for me some nights.

On a positive note, I am increasingly able to fall back asleep using a very sophisticated, drug-free, mind-over-matter technique I formulated while living in Houston. As I return to bed I tell myself, “I’m going back to sleep.” And, it works surprisingly well the majority of time. Sounds silly…but, it works.

I win!!

During my final week of radiation I was seen by a urologist who ordered a cystoscopy, a procedure I will repeat in the future only under sedation. 😳 Fortunately, the inside of my bladder was “unremarkable” (like my ovaries and brain…😜). The doctor ordered a pelvic CAT scan to take a look at other possible causes, but after careful consideration I canceled the appointment. I couldn’t stomach the idea of drinking barium and undergoing any additional radiation while I dragged myself through the final week of IMRT. I did, however, consult with a pelvic floor physical therapist at MD Anderson, and am hopeful the exercises I’m learning and practicing will remedy, or at least diminish the issue without need for further tests. We’ll see.

Neal traveled to Houston to help me pack, ship boxes home, attend the bell-ringing, and provide balance and support when the prospect of leaving my Texas-based family caused my knees to buckle.

While I was excited to return home, I was also emotionally conflicted about leaving Houston and the peace of mind that came from being so close to MD Anderson, as well as area family and friends who were so critically important to carrying me through this ordeal. My formative years and young adulthood were spent in the Lone Star State, and I still consider myself a small-town Texan at heart. As plans for our 40th high school reunion were being formulated, I was reminded that many of these friendships began in 1st grade! I so wish I had been able to attend the reunion. I’m aiming for our 50th, with plans to dance wildly, laugh loudly and behave (somewhat) inappropriately…G-d willing with Chris Carr, Kathy Birch, Maria Guice, Carol Martin, Phil Schaider, Robbie Headrick, Beverly Belcher, Cheryl Wasek, Barbara Spivey, Mike Prokopuk, Susie Wickel and all those I’ve neglected to name, but who want to join in…😉

Our large family continues to grow, and I’ve come to know better the wives, husbands and children of my brothers and sisters, nieces and nephews. It was truly a blessing to spend time together. At a “going home” party hosted by Jenny and brother-in-law, Clay, I had an opportunity to acknowledge and appreciate their abiding and unconditional love, kindness, generosity and devotion. ❤️

After a sweet welcome home from my guys, and a short California “re-entry” period that included a much longed for trip to Hanami Sushi, I began to terribly miss my Texas family.

So, I was so excited when brother, Patrick, nephew Eric and wife, Natalie, along with their precious 2 year old daughter, Avalyn, planned a July 4th holiday trip to California. Good thing I had feverishly decluttered, cleaned and organized, right?! We were joined by nephew Sean Thomas Haggard, (brother Carl’s son), who is now a Los Angeles resident, and pursing an acting career. Ben came home from USC for the weekend, and despite having to keep his head mostly in the books (or in front of his computer screen), was able to join in on some of the activities and meals. Ethan popped in a couple of times, but was encamped with his dog, Maverick, at girlfriend Kelsey’s home. I only cried a little when everyone left…

While new treatment is to begin as soon as my blood work is in range, this particular phase is over. And, while it feels like a huge accomplishment, I am in a strange state of mind. I’m done, but I’m not really done. I wish I could entirely and completely put cancer in my rear view mirror…But, I can’t…I am at extremely high risk (75%) of recurrence and/or metastasis. I must remain in treatment. But, I am mildly conflicted. The new (to me) clinical trial utilizing Keytruda is described as “investigational,” a term that means: “We’re trying this out.” Now, don’t get me wrong. I know the difference between throwing darts and a highly educated and researched “investigation,” but, it just sounds so uncertain. Like the Panitumumab (Vectibix) I received in the first clinical trial, Keytruda is a monoclonal antibody. My ignorant reasoning was, “If Panitumumab didn’t work on me, what are the chances Keytruda will?” As I got my MD on the Internet 😉, I sought further clarification from my real, experienced doctors who explained, “They work on totally different things and by different mechanisms.” Panitumumab, I learned, is “a targeted therapy that targets and binds to the epidermal growth factor receptors (EGFR) on the surface of the cell.” As Amgen’s site describes it, “[Panitumumab] is designed to block growth signals from getting to EGFR on both cancer cells and normal cells. In cancer cells, this blockage may help prevent these cells from growing and surviving.” This approach, unfortunately, did not produce a pathological complete response for me.

Keytruda, on the other hand, “is a type of immunotherapy that works by blocking the PD-1 pathway and to help prevent cancer cells from hiding. KEYTRUDA helps the immune system do what it was meant to do: detect and fight cancer cells.”

My conflict over whether to go forward with the Keytruda was first prompted by statistical information I researched on immunotherapy efficacy that states immunotherapy works on only 10-30% of patients. So, wait…that means there’s a 70-90% chance that Keytruda will not be my personal silver bullet? Those odds hardly inspired in me a great deal of confidence. Keytruda could be the key to my disease-free survival. Or, I could suffer major organ damage, lose my current quality of life due to toxicity/side-effects only to find it didn’t work…Oh, and then there’s that monthly trip in and out of LAX…Talk about a deterrence…😉

On the other hand, someone always wins the lottery. Why not me? I just don’t know the price of my ticket…

And, what is the going price for peace of mind, anyway?

*I learned my latest blood work results a short time ago. I have recovered enough to begin the new trial study, so it is proposed I receive my first Keytruda infusion on August 9th. As Ben sits for the MCAT on that date, and we’ve planned some celebratory and relaxing time together when he’s finally free, I will see about altering my start date by a week, or two.

Finally, I want to thank you all, sincerely, for the thoughtful cards, messages, gifts, personal visits, prayers and care packages you’ve sent over the past year. Your generosity has profoundly touched my heart. I will never, ever forget your kindnesses…❤️

I respectfully ask for your continued prayers. I will do my best to keep you all posted.

 

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12 Responses to Home, Healing, and Houston Bound…Again

  1. Robbie says:

    I so look forward to these updates and you never disappoint, they always leave me feeling so blessed in so many ways. Your amazing writing, wit, love of family and the wonderful, kind and caring person you are continue to shine through no matter what you are dealing with. Although you feel torn between California and Texas, I hope you always know you are loved wherever you are!

    Like

    • Jill Flyer says:

      Robbie Headrick, you are such a dear, kind and thoughtful friend. Thank you for your constant support, and for inspiring me with your commitment and love of family, and all you do for our 4-legged, furry friends. The world could certainly use more people like you! ❤️

      Like

  2. Pennie Patterson says:

    Thank you, for sharing your feelings through this process of living, you give voice to grace.

    Sending love,

    Pennie

    Liked by 1 person

  3. So glad to hear that you have been able to enjoy being home! Missed seeing you at the reunion, but will look forward to seeing you at our 50th! Much love to you, sweet lady – you have been in our thoughts and prayers constantly 😊💕

    Liked by 1 person

    • Jill Flyer says:

      Thank you, Teresa…You and your family remain in my thoughts and prayers, as well. I think of all you’ve been through this past year, and the dignity and grace you’ve all demonstrated…and I don’t know how you do it…That’s what people tell me, too, but they don’t see me when I’m a puddle on the floor! I see people, friends and strangers, going through bigger challenges, and much more suffering than me, and I just feel lucky and grateful. Thank goodness for the love and support of our family and friends, right!?

      Liked by 1 person

      • I know exactly what you mean. Puddles on the floor – can’t count the number, but we’ve both been there. As Mother Teresa said, “I know that God never gives us more than we can handle; I just wish he didn’t trust me so much!”

        I don’t know how you do it, either – your strength and dignity have also been amazing to watch. Being forced to face your own mortality – I can’t even begin to know how big and scary that must be. We all know in the back of our minds that one day we won’t be here anymore, but most of us are able to tell ourselves that that day is somewhere in the distance. You have been denied that comfort.

        I marvel at your resiliency – I am hoping and praying that you DO win that lottery; as you said, Why not me?

        You and your family continue to be in our thoughts and prayers – if you ever need to talk to someone in the middle of the night, I’m in the phone book (and happy to take that call)!

        Love to you and yours 😘💕💕

        Liked by 1 person

      • Jill Flyer says:

        ❤️ Your insights, as always, are spot on, Teresa. I look to you as someone who is learning how to pick up the pieces and go on after incomprehensible and devastating loss and it reminds me of tthe power of human resiliency. ❤️😘💕

        Liked by 1 person

  4. Della says:

    Wishing you much success on this new treatment. And I can’t wait to see you again. Our time together was just too short. Remember we made a deal to meet in San Francisco next time we are on the west coast. I’m really looking forward to that. I haven’t been there in years.
    I love you Jill and I’m always thinking of you and praying for your health to be 100% restored.
    Always in my heart ♥️

    Liked by 1 person

    • Jill Flyer says:

      Della, it was so great to see you and Barry! It was like no time had passed. I am so happy we were able to spend even a little time together, and I look forward to doing it again. I love you girlfriend! ❤️

      Like

  5. Virginia Parker says:

    Jill I was thinking of you just this morning! So glad to hear how you’re doing. I now feel slightly guilty I haven’t finished getting my Home in order from Moving into a new house 2 months ago! All the work you’ve done makes me tired! You are an inspiration to me and so many others with the grace and courage you have shown throughout this journey. Love, continued prayers and best wishes for you and yours! Thanks for the update! Love , Ginger

    Sent from my iPhone

    Liked by 1 person

    • Jill Flyer says:

      Ginger, I chalk up all that cleaning and decluttering to some kind of emotional response to “controlling” what’s happening in my life, and some need for restoring things and putting them into good shape. Cancer made me do it! lol…And, yes, I plum wore myself out! Lately, though, I’ve been able to just enjoy my environment. Thank you so much for your kind words, and prayers. I truly appreciate it.

      Liked by 1 person

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