I now know what you can say to me to rock me back on my heels and render me speechless (temporarily. I eventually had a LOT to say). I saw my Huntsman oncologist yesterday, and the news was not awesome. During my hospital visit last week, doctors tested for just about every wacky, random disease or condition that might have made my breathing get so much more difficult. You remember, the leading suspect was a rebound of lung toxicity from the Everolimus. Well, all the tests are back now, and that’s not it. Dr Akerley says the culprit is almost positively advancing disease. The tumors around my heart and lungs are growing and have grown so much that they are squeezing my lungs and my heart and having an impact on basic function, like breathing. My left lung doesn’t work so well any more, and there’s now metastases in my ribs. I’d been suspicious of this for a couple of months, but no one ever mentioned it. (What?) Now it makes sense. Disease is eroding my ribs, and that’s why they’re cracking when I cough. For nothing else but information, it would have been nice (“Nice” is not the right word) to know this two months ago, not that there’s anything I could have done about it.
Then, he whipped out the “H” word. “Hospice is always a reasonable option,” he said to me, the girl of Defy and LiveFearlessly and RelentlessForwardProgress. Maybe he threw it out there just to say it’s ok to be weary of the fight but I couldn’t even process what he was saying. I was stunned. I remember the shock my friend, Scott McKenzie, described when his doctor offered up hospice to him. You think, “He can’t possibly be talking to me.” Well, he was to Scott. And he was to me. Hospice. End of life care. As an old assignment editor at the tv station used to say, “Waiting around, fixin’ to die.” Did he really think that is me now? Ever? I remain unafraid to die, but not now. I’m not ready. I haven’t finished fighting with all the weapons available to me, and I have too many things to do and places to go. Still, it took me a good twenty minutes to get my shit together enough to say, “No hospice. I’m not ready for that.”
So now, what?
I am still aiming for that interlesional experimental (very experimental) drug delivery trial at Huntsman. They’ll inject the drugs directly into a tumor I have on the outside of my ribs.The hope is that it’ll affect that tumor and go on to affect others. It has worked well, according to my doctor, in the lab, in mice, and in some people. I have to do a drastic step down on the high dose prednisone I’m taking, starting today. I’m back up to 50mgs a day, and I feel slightly better. In a week, I’ll be down to 10 mgs a day, and I have to be able to tolerate that for two weeks before I can be accepted into the new protocol. I think I can do it. I felt pretty good last month on just 10 mgs a day, but the longer it takes to get two full weeks of 10 mgs a day, the more likely it is that I’ll lose my spot in the trial.
This trial is also being run at Johns Hopkins, but they’re not recruiting patients. In a perfect world, this trial will work and Dr Akerley can get me transferred to Johns Hopkins and I’ll live at sea level for at least a few weeks. Dr Rajan isn’t sure that is feasible, but we’re (I’m) going to give it a shot. I’m just not sure I can do a whole winter again at 7,000 feet.We won’t wait long to do a follow up CT scan after the trial starts (if I get in), because as Dr Rajan says, we figure there’ll be no improvement in a month, but we want to make sure the cancer cells aren’t running rampant sooner rather than later.
I couldn’t believe the words coming out of my mouth, but I heard myself ask Dr Akerley about standard chemo. Never say never. He turned grim. He said it wouldn’t work for 90 percent of patients, and of the 10 percent in whom it worked, it would only give them a few months. On top of that, 100 percent of patients will get really sick. I was ready to leave it on the table, but because I have contact with all three Thymic Carcinoma experts in the US, I asked them as well, as I always do. I don’t know if this is annoying to Dr Akerley, but I’m trying to save my own life here. And it’s a good thing I stretched. Dr G, who’s moving to Cornell this week, chimed in to say the combination of Gemzar and Xeloda is well-tolerated (whatever that means) and effective. Dr Rajan says that combination has a 20-40 percent success rate for stabilization or tumor shrinkage in TC patients because for some reason, chemo doesn’t lose its effectiveness in them. On top of that, I haven’t had much chemo since 2001. On top of that, Keytruda, the immunotherapy I was on may/should make the chemo work even better, should it come to that because my immune system is primed. So now, I have two possible lines of treatment, where I had none yesterday. This stuff will make you crazy, but it all builds hope if you look.
Before you ask, I don’t feel good, although I feel better than I did this time last week, when I flew home from Denver and went straight into the hospital. I take Tramadol and 6-10 ibuprofen a day just to get through the day and sleep through the night without pain. I will say that I had become a terrible sleeper, but my drug-assisted sleep is getting me an hour or two MORE sleep a night. Score! I’ve figured out how to ride the Vespa with my small oxygen condenser and a backpack. My average daily heart rate has dropped from 105 to 98 in the last week so I feel better. And thanks to Judi and David, I have pie in my refrigerator.
My beautiful fall plans are in jeopardy again; how often have I said that in the last few years? More often than not. But I have a couple of viable options and a lot of really smart people looking for more. Shelving the “H” word to the back of the bookcase and getting a bigger “D” for the front. Defy. I’ve been doing it so long now, I wouldn’t even know how not to be on the front line. Like my friend, Stu Scott. Every day, I fight.
Praying that resolution is close to restoring your strength to fullness and giving you many more years on this earth. You’re an inspiration to so many people with your posts and the journey that you’re going through in life. You give me hope in my current journey with chronic lymphcetic leukemia and the clinical trials that I’m currently going through. My wife and I never thought that retiring to TN from FL would start out like this. Life sure has it’s challenges and we have to be strong and push on to make it in life. Hugs and Love.
Wendy my prayers are with you every day . You wouldn’t remember me but I was in sales at WESH while you were there and I have always had the highest regard for you as a journalist and as a warrior. Warmest wishes are always with you. God Bless You!
Redirecting toward the positive!! I don’t see an “H” in the word Wendy. This may seem like an insurmountable hurdle but NOT for the one who lives fearlessly ! Stay open to all possibilities Wendy .. let go of that word You’ve learned to go with the flow and fight! . The Universe has no limits to get you well. Your approach to life is to live with no fear, to #defy and soon you will rediscover the beauty of winning your health back. You have taught so many people how to live… we believe in how deserving you are as you continue to #defy. ❤️Kelly
Wendy it was so nice to meet you in Park City last week. In spite of just getting out of the hospital you came to our retreat to give your inspirational message. We are so grateful and are in awe of your strength of spirit. It was an honor and pleasure to hear your powerful words.
All the best,
You are the most inspiring person to me. I have always wanted to meet you. I used to live in Daytona Beach and watched you on WESH. I now live in Eden Utah. I have been diagnosed with complex regional pain syndrome and it is the most painful disease known to man. I always said when I was diagnosed I wasn’t sure what was worse; my disease or cancer. I paid for my Orange Theory membership for 9 months although the pain of my body would not permit me to go. I was devastated when I finally I had to let it go. The altitude causes me issues but for different reasons. But I love the mountains and I moved here for the hiking, skiing, cycling and awesome half marathons. All of which I am so desperately trying to get back to. I am headed to Italy at the end of September for a med the
FDA was supposed to fast track and
approve but changed their mind. There is no specific med for my disease or cure. Like you I
am constantly researching and searching for what might work. You say DEFY. I have a tattoo that says Determined. When I have doubts I think of you and all of your strengths. All my prayers to you. From another Wendy
Following you closely. You are my role model and hero. DEFY! I’m still hoping to meet you in person one day! Much love, Susan
Life is so hard to understand. I met you many times when you were in Orlando, and you were always such an inspiration-you were so fun back in the old days. I remember meeting you for the first time at Lee and Karen Barretts Holiday party- you were the nicest. Twenty years later, your strength, courage, and tenacity are still inspiring with great magnitude. GOD CAN CHANGE THIS, AND THE POWER OF PRAyER IS THE STRONGEST WARRIOR! I most certainly will be praying for you and will do a special novena for you(it is a catholic thing). You are such a gift for so many people. Many prayers can hopefully encourage God to have an exceptional plan and path for you so you can keep on inspiring!
My thoughts and sincere prayers are with you during this challenging journey.
Wendy, I remember all those years ago when we had our surgeries in the same week. I remember my surgeon saying to me, “Wendy is going to be all right.” I have believed that every single day since then because, well, you’re you. You fight, you defy, and you make things happen that most of us could never even dream of. I will be thinking of you every day and watching to see you conquer this challenge in the same way you’ve conquered every other one you have faced. Because, well, YOU’RE YOU.
Oh dear Wendy…forget about Hospice..that is not for your spirit…your spirit is more alive than mine..seriously…YOU ARE GOING TO BEAT THAT TRIAL AND YOU WILL FEEL AMAZING..MY PRAYERS AS ALWAYS ARE NON STOP…DEFY..DEFY…DEFY…TRUST IN THE DIVINITY..BLESSINGS..BLESSINGS..BLESSINGS..FOLLOW YOUR SPIRIT…HE KNOWS!!!
CDA is praying for you! Hang in there.
Wendy, thinking of you as i go to cover my 10 thousandth hurricane…First was was Hugo…you me and ralph!!!! Hang in there…Gordo
You are a fighter/warrior/goddess. Every time I read one of your posts I think to myself, “Someone is going to read this and have the inkling to fight—and fight hard.” Your musings are—and will continue to be—a lifesaver. I’m sending you impossibly good vibes and good juju. And if you were Jewish, then I’d send you good Jew juju. I heart you. And hello from Hurricane Dorian — because, of course, I’m in Florida right before a hurricane smashes into it. XO.
Best of luck to you, Wendy! I attended some of your classes you taught at Bally Health Club in Orlando. A Passionate and encouraging instructor, I’m sorry to hear that you are dealing with this.
Wendy, I don’t know you but if you are able to watch some miraculous real-life healing stories, please go to https://www.awmi.net/video/series/healing-journeys/.
There you will find these stories about blind woman’s sight restored, baby with stage 4 cancer miraculously healed, woman healed of systemic lupus, kidney and heart failure, brain aneurysm overcome, stillborn baby resurrected, multiple sclerosis defeated, a daughter given just days to live healed, a little girl’s heart miraculously grows its missing piece, woman healed of 13 years of brain damage, man healed of deathly yellow fever. Faith comes from hearing and seeing. Jesus is the same healing giver as he was 2,000 years ago. I discovered this healing guidance from Andrew Wommack two years ago and was healed of persistent Lyme disease when a leading doctor said I would need to be on heavy antibiotics the rest of my life. Please check out these stories so you too can have faith and be healed! I am praying now that your illness will begin being reversed and that you will be healed. Please call out to Jesus for His healing. He wants to help you but you need to ask Him. Blessings to you…
you are so strong! i am pulling for you!
Wendy, please know that all your old friends from Orlando love you and are pulling for you to win again. Your determination is awe inspiring. Onward, beautiful Sister! 💜💜💜 From Deb Sammons Blechman
Hue Lien Duxbury
With you from afar Wendy. F@$k hospice.
I’m so sorry you have to deal with this!!! But through it all you continue to show us your warrior strength, know that we are ever so grateful for all you do and share with us. We are praying for positive outcomes for you! Stand strong!
Thanks for sharing your journey. Keep on fighting. I will keep on praying.
Here’s to viable options — with all my love and admiration!
I AM Jewish, so I can send you SUPER JEW JUJU! Can you swallow a lot of Life Extension SuperBioCurcinum? I would guess you’re doing some holistic stuff in addition. But whatever you’re doing – you’re doing INCREDIBLY GREAT!! There is 100% HOPE. I loved this. I believe in YOU. You will be in this trial. It WILL work. If we have to picket at the hospital to get you in the trial – I’m in with my sign! We all are. My gut is feeling extremely optimistic for you. I love your Vespa story. I didn’t like the cracking ribs, but that too – WILL pass. You’re a quarterback playing with a cracked rib, that’s all. You’re in the game. And you are going to win.
May God be with you. May he watch over you. May the blood of Jesus washes over you you and anoint you. May God touch you from the top of your head to the soul of your feet and as he blesses you destroying tho tumors. May God add a blessing to your soul in Jesus name, Amen. We lift you up in prayer 🙏🏽🙏🏽
Go, Wendy! Praying for you and blessed by reading your words which are LIFE!
Pat Maron Welshon
You just keep fighting! ❤️ You have more life in you than all of us put together. And keep writing. It helps us to be very specific in our prayers 🙏
Wendy – you are grace on fire. I love how you describe this agonizing process with such humility and humor. I thank you for including us in your life. It is an amazing life! And you live it, as billed, fearlessly.
Grace on fire. I love that.
Oh Wendy, you amaze me at your ability to sift through and figure out options. And you are the toughest one I know! I hope you have seen all of the love and support out here for you. Add I, and Pat! Are here for you too, as you know. Sending our love and a virtual hug. Hang in, DEFY, LIVESTRONG, XO JOHN
Wendy – you were a mentor to me when I was a young intern at WESH and you are still that role model for so many fighting their way through an illness. I am praying for strength and healing for you in this fight. You CAN do this.
Mary Ann and I are praying for your strength, your determination and all of the best results you deserve. You’re a fighter! And you inspire all of us with your sheer will. Peace, Greg
Dear Wendy- In 1991 you came into my home to interview me about my fight with cancer. I was a teacher at Lake Mary High School and you had heard about all the fund raising activities planned to to help my family. I am a lucky guy, a survivor! I wish you the best and I love your positive kick butt attitude. Our thoughts and prayers go out to you.
Sultana F. Ali
Wendy – you are an incredibly strong fighter. No matter what, there is light within us and I know that you will find your footing one step at a time. Know you are an inspiration to many, however you choose to step forward.
Oh Wendy, I’m so bummed to hear the latest. BUT, you are the fighter above all others, and I’m betting that your positivity and the prayers of everyone will see you through…..again.
Prayers to you from a fan from Orlando that watched you for many years.
Peter Schwoerer and Mimi Lim
Wendy – Your are an inspiration and hero to so many, including my wife Mimi. I am sure you most certainly have thousands of people praying for you, may those prayers be answered.
Peter and Mimi
Hey Wendy. Remember me? We used to be engaged until you planted drugs in my car and had me sent to prison. Wait. That was fiction, not real life. I’m always getting those two confused.
I am sorry to hear about your medical condition. Cancer really does suck.
I am not good at offering advice, but these quotes came to mind: Jesse Jackson – Keep hope alive. Rob Schneider (from The Waterboy) – You can do it. Barack Obama (that guy you almost went to school with in Hawaii) – Yes you can. I believe all three.
Even though we have never met in person, you have had a positive impact on my life. I am praying for you and sending out positive vibrations.
Your former fictional fiancé.
Sending you hugs and strength and love, dear Wendy! –
So glad I got to give you real hugs in August! –
We are with you in your search for options! –
Let us know if you head this way –
We are here for you! –
Susan K. williams
Wendy, Keep your fight going against cancer……….your way!!!! It’s your life and your decisions. Keep kicking cancer’s ass……..your way. (((((HUGS)))))
Mary Ann Snow
Your spirit is amazing. I wish you the best.
Hi Wendy. I was reading about your epic battle with cancer. Your strength and passion are phenomenal. I wanted to let you know about a little known off-shelf use of a drug, already in existence, that has worked incredibly well to reverse various cancers, even stage 4. ( I’m not affiliated in any way with it) It’s called LDN, Which stands for low dose naltrexone. In high doses, it’s used to get people off opiates. But in low doses (no higher than 4.5 mg) it has reversed cancer. I believe it works by resetting the immune system so it can then recognize invading cancer cells, and eliminate them. The medicine has to be compounded by knowledgeable pharmacies. We use one in Colorado. (We’re in nyc) please do your own research and check this out. It’s not widely known, and many Dr are not familiar with it, although that’s changing. It’s also used for auto immune deseases, and to slow down symptoms from MS. Do your own research. There is a great fb group, and a reddit group. Good luck!
Hello Wendy! Which trial is it with intratumoral injection of the drug and do you know which drug is used??
Maybe you’ve already heard about Dr. Williams, he is doing very similar things … I sent him all my documents and now waiting for his call..
this is the website http://www.williamscancerinstitute.com/
Regards from another TC warrior 🙂
I’ll look up Dr Williams’ trial as well
Keep up the Fight Wendy, You are an inspiration to all.
Wendy, I sincerely wish you as much time on this earth that you desire … you are an inspiration. May God Bless you and keep you under his wing.
Wendy, I am a viewer of the news in Orlando. And a Woman of God, Today, sitting and talking to my husband, who is a Minister the Holy Spirit brought your name to me. I looked you up only to read your story. Our prayers are with you and your family. Continue to hold on to your faith and believe that God is in Control. I do believe that everything happens for a reason. And to have you enter my mind and spirit there is a reason. Please know that I will keep you in my prayers.
May the Spirit of the Lord continue to cover you.
God bless you.
Peter and Anthony
To our wonderful, awe-inspiring superhero Wendy. We love you! Ant and I send all the power of positivity and possibility that exist in the universe to give those nasty tumors notice who’s boss. Wendy for the win, they lose!
I believe h in your alphabet stands for a healthy heart made strong from love, courage and beauty of spirit that will continue to .beat for the important life you have to live, for the people you inspire and adversity you continue to crush so fearlessly . xxxxxxxxxxxx
Hi Wendy, wow, Kimmy Hayes here. Another powerful blog. If you can picture this, I just read it aloud to Todd & Yvette so we could experience your words together. We’re all pulling for you, & hoping your new cocktail of meds will pull you from the fire and make you feel so much better, & yes I’m praying for you…hey it can’t hurt, right? You’re very courageous, & very strong. Thanks for sharing.
Lerril P. Wright
Wendy, you are in my prayers and may Jehovah God give you strength to keep fighting. Lerril P. Wright AKA Lin Wrigh’s baby brother.
So much love sent.