Starting this blog with Lyrics from one of my favorite Nine Inch Nails songs. Ah you’re surprised I can even name a NIN song, but actually, I can sing whole albums. I’ve seen them twice, once from the second row of a mosh pit (try keeping that a secret, being Wendy Chioji and all), and the next night in a big arena. But I digress. The line before “Now, I’m down in it” is “I was up above it.” That’s a pretty good summation for me, anyway, to say that I’ve been able to avoid standard of care, standard chemotherapy for five years, instead going from clinical trial to clinical trial of targeted drugs, immunotherapy, and a couple of off-labels. But because it offers me a 30-40% chance or higher of responding and actually feeling human again in this lifetime, I started Gemzar and Xeloda Wednesday, September 18. It is used primarily to treat patients with advance pancreatic cancer, but really smart people who specialize in rare diseases found that it also is highly effective for Thymic Carcinoma folks. Thank God for that and for them.
“I was up above it, now I’m down in it” is also a pretty good descriptor of that happened to me between September 17 and now. This chemo combo is Gemcitabine (Gemzar) as an infusion of days 1 and 8, and capecitibine (Xeloda) as a pill, 2000 milligrams for 14 days, with week three as our Drug Holiday (there will be partying. Or at least staying up until 9). Gemzar is gentle as far as chemos go. It could have made me nauseated, fatigued (hold on to this one), felt flu-like symptoms, and affected some blood counts. The Xeloda can give you nausea, vomiting, insomnia, and fatigue (hold this one, too). I’ve been only barely nauseated, but I have forgotten how to sleep. I take Tramadol and THC gummies which help me fall asleep. For an hour. Then, I’m up all night long. Wide awake usually. Saturday, I think I saw most of the minutes turn until the sun came up. I haven’t seen the sun come up since college, and that was way more fun (and the drugs were probably better, too). (I’m kidding, or am I not kidding?). That means I am dragging myself through the days, barely keeping my head from hitting the table at lunch whether or not I have a lunch partner.
I also was adamant adamant adamant that I did not ever want to lose my hair again. I ordered the Penguin Cold Cap System, which cools your scalp to about -25 degrees before, during and for four hours after infusions. The science being that drugs won’t get to the follicles and damage them. Tiff, Patrick and I worked through the somewhat complicated instructions and got through the first frigid 20 minute rounds of cap changing. But I was feeling lightheaded and somewhat nauseated, and dizzy. Not good. Right at that moment, an infusion nurse walked by and said,”Don’t torture yourself. Your chemo combination doesn’t make y0ur hair fall out. I’ve never seen it happen.” And that was enough for me. I told Tiff and Patrick that I was just thinking there’s no way I can tolerate this countless more times. I know that thousands of women use these systems successfully, but I don’t think they’ve been kicked to the ground quite as many times as I have before they show up in infusion. I could be wrong, I could just be being soft, like I still am when my friend, Andrea, talks about her beloved Bikram Yoga classes. All I know is, we’re moving forward relentlessly with no cold caps and I’m hoping that cute nurse is right.
So far, not a hair has leapt to its death from my head. But it’s only been 8 days. 16 has been the key day for me and my traitorous hair in the past.
I made my planned flight to Maryland, though I’ve canceled everything else. While in Maryland, I didn’t go to my reunion pre-party. I didn’t go to my reunion. I didn’t go visit some family I haven’t seen in a long time. I didn’t go see the Redskins play in Monday Night Football (maybe that wasn’t a bad thing.. Although it’s always fun in the box). I mostly laid around and ate very small amounts of leftovers (I have no appetite. ME!!!), tried and failed to sleep for more than 30 minutes at a time, and had that chemo lethargy where you are too tired to lift your arm to turn off an alarm. I did, however, make meetings with Dr Rajan at the NIH and my soon-to-be-new Dr Kim at Georgetown/Lombardi. Both are so… “optimistic” isn’t the word. It could be that they’re so “convinced” that this drug combo is going to work that Dr Rajan couldn’t keep himself from asking me if I had noticed any differences yet. If it’s not my imagination, I have. The bone mets on my ribs SEEM smaller. And I can draw full breaths on a regular basis now. It used to be a weekly feat. Dr Kim is great. I do know him. He was Dr G’s Fellow at Georgetown, and also worked with Dr Rajan at the NIH. I met him when I did the Sutent trial, and when I did Keytruda and made milcicliv maleate at Lombardi. I feel like he’s doctor destiny for me. I’m totally comfortable with him being my oncologist for as much of the winter as I spend in Maryland and for whatever else lies ahead for me on the East Coast.
In Maryland this time, though, sea level didn’t seem to help me much. I was disappointed until I remembered that I hadn’t factored in, oh, two new chemotherapy drugs. The trick will be how I feel at higher elevation in a few days. In my down time that I gifted to myself through canceling commitments, the computer was too heavy and too much of a burden to get (from next to the bed), so I surfed social media on the phone, and am writing the blog 3 days after the trip, back home in Park City. I didn’t think being in Maryland at sea level was that great until I came home to Park City. Holy Cow. The shortness of breath is incredible. I’m fighting off panic attacks again. And here, I can’t sleep either. It’s my answer for this winter. I’ll be spending at least a coupla three months with Al and Sheryl and Chris. They’re good with me bringing Linus and Lucy, so we’ll all head out sometime before Thanksgiving, all dependent on my suffer factor and when Dr Kim can get me into the infusion room.
I believe I have passed the nadir of these weeks of wretchedness.
I believe that these drugs are going to work for me, hopefully sooner rather than later.
I am grateful to be able to choose where to get my care, and I know that most people can’t do this.
I am grateful that I wasn’t the only one who got angry and went into a higher gear when it was suggested that hospice is a reasonable option (and again, I believe that it is for people. Just not me, not now).
I am grateful for how my friends and family are standing right over my shoulder so I don’t have to ask for big things, like trying to make that dang cold cap fit, and getting food delivered for the many days that all I can do is nothing. Or small things, like sending notes and pictures and putting their favorite photos with me on my Facebook page. Mike, it did turn out to be my favorite thread of all time.
I am grateful I have lived well on my borrowed time for five years this Labor Day.
I am hopeful I’ll borrow five more.
Once again, your story has moved me beyond words.
Your strength and courage is inconceivable-thanks for sharing such a personal journey. God bless.
You’re an inspiration and I hope and pray you’ll get 5,10….and many more year to be a guiding light to many
Good luck Wendy we all love u in Orlando
I hope not only for another five years but that you complete another triathlon! Best wishes.
Cannot believe you have passed. Prayers and thoughts for the family ❤️
Wendy, you’re the essence of what Life is all about. Live on, girl!
Wendy, I remember watching you broadcast in Orlando and was so sad when you left! You were my favorite and have really never been replaced by anyone else. I’m happy to see you still fighting the good fight. You were and continue to be an inspiration for so many. Sending prayers and best wishes for at least another 5!!
Steve & Debra Shaiken
Not just five more years but scores of years. You are amazing
Love to you
Steve and Debra
You are a warrior in so many ways. Thank you for sharing your journey with us. We pray for good days and good health for you. Stay positive. As you know the mind is powerful. You’ve got this!
You are kicking it girl, i am sure is working and you are going to feel great, hang in there, hang in there, prayers are non stop….i believe that we are a spirit with a body, not a body with a spirit..and YOUR SPIRIT IS THE MOST HEALTHIEST OF ALL….DEFY..DEFY…DEFY…DEFY…BECAUSE YOU CAN!!! BLESSINGS TO YOU, LINUS AND LUCY…
I hope and will pray for 5 + many more healthy and adventure filled years for you!
You are my hero and show such amazing strength! Rod and I are praying this protocol works for you 🙏🏻Sending you love and prayers❌⭕️
Despite being given a very, VERY grim prognosis at the jump, my mom Pam also defied science for five years. She was very thankful for every day – every birthday – she had the privilege of putting behind her. She never complained, always smiled, and never sweated the small stuff. She encouraged me to do the same, and while I stumble, I remind myself of her fight every single day. Rock those socks and GO GET ‘EM, Wendy!
Praying for you. Psalms 91
Saying a prayer for you , your family and your doctors, nurses, pharmacists – everyone on your side. I used to live in Orlando long ago and watched the news with you on it. Relocated to Maryland and came across this today. Your posts are great and bring home the willpower and grit cancer patients need to cope with treatments. I work in the business end of clinical trials research and your words provide determination for me. I want us to find effective cures so I can be unemployed. Losing my job would be the greatest thing in the world of it had that outcome.
I followed you on TV religiously when I lived in Orlando-you were my fave! My UCF sorority sister (and cancer thriver)shared your recent blog post and so I caught up with you again.
I did not know that your cancer had come back and that you have moved out West. But, in true Wendy fashion, I love that you rejected the Hospice road and continue to fight and inspire!
Much love and lots of prayers to you; I will continue to keep up with your journey online!
I wish you many many years ahead of you. Sending healing angels to your side.
You are unbelievable! My Mom always taught me to “be sweet” and “gird up your loins & get on with it!” You are a true example of this. Mahalo for sharing your journey with us. Sending you love & healing vibes your way!!! 😎❤️
Wendy. You are amazing woman. You never give up💖
stay strong and God Bless
I remember flying you in Orlando to do the new stories and then when I became the news, you and the crew used to come visit me in the hospital. I always thought you were a special person then as I do now. The people you have touched in your life always remember your smile, laugh and your contagious great personality.
If you need to borrow 40 more years, I will be more than happy to lend them to you.
Thank care and prayers always going your way.
Wendy..WOW I just came across this site by accident. Back in the day firefighters were selling calendars to raise money.I ‘m the guy who told you in a phone conversation that I thought a Wendy calendar would be a great seller. Sure miss seeing your beautiful face on tv. I was Blessed with a Son in Dec.1998 .When he was 3years old I was diagnosed with cancer. Thank God for the great team at John Hopkins I celebrated my 82nd birthday October 1 .If it’s OKAY I ‘ll put you in my prayers. God Bless you.
You were my favorite anchor in Orlando. So happy I came across your blog. Praying for you! Keep fighting! You are an inspiration! God Bless!!
Wendy, keep up the fight! There is so much we don’t know about the dreaded “C”! Praying for you as you walk this road…(PS, still remember when my cousin (who was in the TV industry in Orlando) had a crush on you! 🙂
Wendy, God Bless you! You have been my hero since reading your blog when you first diagnosed with breast cancer! I pray this new treatment gives you many many more years to live fearlessly!
I just saw part of your blog in the Orlando Weekly. I too remember you in Orlando. Sending prayers and healing light. You are one fierce lady.
I admire your wonderful courage and pray God’s blessing be with you. Frances Lane
God bless and keep you in the palm of his hand, sweet Wendy. Rest peacefully.
Shannon J McDonough
Rest in Peace Wendy. You were a Great Newscaster.
Wendy, I remember when you were here in Orlando very well. You are such a fighter and an inspiration to so many. My prayers are with you along with many others. Hang in there girl. You are so loved by many. 💕
RIP praying for your friends and family.
Wendy, You will always be an inspiration to me. I will miss your blog that was full of optimism, encouragement, and fun adventures. I know Linus and Lucy will miss their mom.
RIP. May God bless your soul and keep your family strong.
Darn you for not going to homecoming with me – it took me a week to work up the courage to ask.
You fought a good fight against cancer. Just read on Daily Mail that you lost the battle against cancer this time after 18 years of fighting it. Sad to hear this. Condolence to your family.
Dear Wendy. Now you are gone. I hope your death was as cool as you hoped for. And I believe that you did get it right this time. Thank you for all that you gave in this life, all that you gave to furthering cancer research. You will be dearly missed. Fly high sweet angel. There are meteor showers tonight. I’ll be looking for you among them.