We Put the Trial in Clinical Trial

Cancer Diary

We Put The Trial in Clinical Trial 

Opening statement: I am extremely grateful to be in the clinical trial!

Let me begin at the beginning of our clinical trial journey. One day as I was mindlessly scrolling through Facebook I saw a post written by my daughter’s wedding photographer about a Glioblastoma information session at New York University’s Langone Hospital. (Random, she lives in a small town outside of Lubbock.) 

    Since I had recently been diagnosed with Glioblastoma, and since my daughter lives in New York, I took a screenshot and sent it to her. A few days later she attended the information session which turned out to be on a different/more specific form of Glioblastoma than I have. After the session she randomly had the opportunity to speak to one of the presenting doctors. Guess what? This doctor specializes in my Glioblastoma and is running a clinical trial. Serendipity, God wink, the universe speaking? The doctor gave my daughter her personal cell phone number and asked her to get in touch. 

When we had our first phone conversation with Dr. Miller about the trial we learned that in order to qualify I had to be x number of weeks out from surgery and x number of weeks out from radiation. I met those qualifications. When she asked to gather some basic demographic information and I gave her my date of birth, she commented that I shared a birthday with her mother. Then she said, “I’m saving you a spot.” 

We made arrangements to proceed. A Telehealth video conference was scheduled, an appointment was made for my first clinical trial visit, we were on our way. The final hurdle to being accepted was a post radiation MRI. Even though my radiation oncologist cautioned me that an MRI done so soon after radiation could present false readings we went ahead with it in order to get into the trial. I had my MRI done on a Wednesday, jumped through all of the hoops to get images shared with NYU Langone on Thursday, and flew to New York on Friday for a Monday morning appointment to begin the trial. 

We landed at LaGuardia airport after a long travel day and I was greeted with multiple messages from Dr. Miller’s office informing me that the MRI scans had not been sent. I soon learned that trying to coordinate medical care between two different hospital systems is nearly impossible. It was late on a Friday afternoon and no one seemed willing to help until a bad ass New York nurse performed a miracle and somehow got my scans sent. Hallelujah! I was able to breath a sigh of relief and enjoy the weekend in New York attending my granddaughter’s voice recital and my grandson’s eleventh birthday party. 

Monday morning we left my daughter’s apartment early, took a very expensive 45-minute Uber ride to the doctor’s office in New York City traffic, and presented ourselves at registration. We had to go over lots of bureaucratic red tape consent forms that would normally have scared the crap out of me, but I don’t scare easily anymore. Then I noticed that the nurse was speaking of the trial vaccine in future tense. I stopped her and said, “We are here to get the vaccine today! We are starting the trial today!” The consent form stuff could have been an email or a zoom meeting at the most. The nurse looked a bit sheepish and left to get the doctor. 

Apparently something was lost in translation, or somebody dropped the ball. Somebody screwed up and it wasn’t me! Frenzy ensued as the doctor and nurses tried to make arrangements for me to get the trial vaccine on Monday afternoon. My next option was to get the vaccine at 8:00 a.m. on Tuesday morning. I had a 10:30 a.m. flight. We were advised to go get lunch while they tried to work things out for a Monday afternoon appointment. 

I did get a fabulous hamburger. Mid-way through lunch the nurse phoned to say we had an 8:00 a.m. appointment the next day. At the same moment as her phone call my husband got a message from American Airlines asking if our travel arrangements were flexible and would we like to make changes to our flight at no charge. Yes, please and thank you. 

On Tuesday morning after another early and expensive Uber ride we presented ourselves at the infusion lab. I went back by myself, thinking I’m getting a vaccine and then we’re out of here. A very nice nurse came in and informed me that they had no idea why I was there. There was no paperwork, no consent forms, no lab work. That’s when I broke. 

I had been on pins and needles for weeks jumping through all of the hoops to get into this trial. I’d gone through stress and frustration day after day as I felt like an insignificant cog in the giant medical machine. Just when I thought I was finally winning at some part of this cancer game, the bottom fell out. Yes, I cried. I asked the nurse to get my husband and daughter from the waiting room. When they saw me sobbing they assumed the worst - that I didn’t qualify for the trial. 

Thank goodness for angels masquerading as nurses. My lovely nurse took charge and got everything under control. Consent forms - check. Blood work - check. Urine sample - check. Orders to the pharmacy for vaccine - check. Kind words and sympathy - check. I had to wait two hours for the vaccine to thaw (they keep it frozen), and then stay for observation after the injection, but we got it done. Thankfully we changed our flight home. 

We arrived back in Texas at 11:00 p.m. instead of 3:00 p.m. A small price to pay for a chance at a cure or a time extension. We will be back for the second injection in two weeks. I hope I get the same nurse. 

Happy New Year

Cancer Diary

Happy New Year

I always love the new year. I love a do-over, a chance to recommit to resolutions, an opportunity to imagine a new me. For as long as I can remember I have observed an end of year practice of listing twenty-five things I accomplished in the current year, and twenty-five things I looked forward to accomplishing in the new year. These do not have to be huge accomplishments, some years I counted being a good dog mom or not killing my plants as things I was proud of. Other years there were bigger things - like climbing Mt. Salkantay and trekking into Machu Picchu. This year I was able to count surviving brain surgery and getting through radiation and round one of chemotherapy. 

  The looking ahead part of this exercise is a little different this year. It’s hard to know what I will or won’t be up to tackling. I know I won’t be going to the gym, but I can commit to walking with a friend. I’ve given up my life-long quest for a thinner body, I’m now trying to maintain a slightly higher weight as protection against chemo weight loss. I could try harder to give up sweets, I know I shouldn’t be eating sugar, but I also feel like I should spoil myself with chocolate. Things I will do are drink more water, get more sleep (daily naps have become a thing), spend time with people I love, and practice gratitude. 

I have made my lists. I had almost thirty proud accomplishments in 2025, and I have twenty-three “to-dos” on my 2026 list. I’m leaving the last two spots open for serendipity to strike. The number one spot on my 2026 list is to fight this cancer that so rudely invaded my life in 2025. 

I had a post-radiation MRI yesterday, much sooner than my radiation oncologist recommended, but it is a requirement for the clinical trial. I got the report on the MRI in my patient portal this afternoon. Since I never went to med-school and I haven’t watched E.R. or Gray’s Anatomy I had a hard time understanding the report, but when I read, “No evidence of residual or recurrent disease,” I felt as if I could breathe for the first time in weeks. This means I can participate in the clinical trial at NYU Langone. 

Things are happening quickly. We leave for New York in a few hours and my appointment for the first trial vaccine is on Monday. I’ll explain the clinical trial in more detail in a future post, but it is an immunotherapy trial that is in phase three and on a fast-track to be FDA approved. This gives me so much to look forward to and to be grateful for in 2026. 

I won’t be trekking to Machu Picchu this year, but I do feel encouraged to make plans and set goals now. I still have a long row to hoe, but I have more hope than I did when originally given my diagnosis and prognosis. So, here’s to a happy and healthy 2026 and some major accomplishments that I can list at the end of this year!

My Hair!

Cancer Diary

My Hair!

When I got the news of my diagnosis on September 25th (15 days after my first symptom), the only thing I could focus on was NOT DYING. When presented with possible side effects and/or potential problems, I said I didn’t care. 

The possibility of losing more vision, or even all of my vision, didn’t phase me. I even told the neurosurgeon that if it meant he could get more tumor I had no problem with losing my vision. My attorney daughter scolded me for saying that. “Mom, don’t ever tell your doctor it’s okay to blind you!”

When warned that hair loss was a possibility I think I may have laughed. Who cares about one’s hair when faced with a terminal diagnosis? Well, apparently that would be me. I didn’t think it would matter, but it does.

My hair began falling out on 11/17. I showered and thought, “Oh my, that seems to be more hair than I typically lose when I wash my hair.” When I ran a wide-toothed comb through my hair, huge clumps of long gray hair came out. Two days later I had a wig thanks to the Inside Out Foundation. theinsideoutfoundation.org I’m extremely grateful for all this foundation does, but the wig does not suit me. It is the exact color of my real hair, but to me it screams, “Hey everyone, I have cancer!”

I got an emergency appointment with the wonderful woman who cuts my hair and a friend met me there for moral support. I wasn’t sure if I was going in to get my head shaved or if I was just getting a good haircut. The stylist cut my shoulder-length hair to chin level. I cried when I saw the piles of my silver hair on the salon floor. At least the clumps of hair that came out every day were no longer a foot long. Somehow the shorter clumps were easier to tolerate. 

I soon became adept at the old-man-comb-over. If I could get my hair brushed over the back of my head, I could put on a hat and look fairly normal. I come from a long line of hat wearing women. All of my glamorous aunts wear hats. I have aspired to be like my glamorous aunts and have amassed a collection of hats so large as to require a department store hat stand display to house them all. 

Alas, the hat solution didn’t last long. I’ve lost so much hair from the back of my head, where the radiation was focused, that the comb-over doesn’t really work anymore. So now it’s “cancer hats,” soft skull caps designed to not irritate one’s bald head, cover the baldness, and provide a degree of warmth. These hats also scream - CANCER!

Please don’t misinterpret what I’m saying. I am truly grateful for the radiation treatment I received. I know that “it’s only hair,” but losing my hair made everything real in a way that nothing else had - not even brain surgery. I now carry an outward sign of my illness. I can’t forget or pretend that I don’t have cancer. 

It’s just hair, but it was also part of my identity. My identity as a strong, healthy, active, fun, person. I could pull my long gray hair into a ponytail, go to the gym, and do anything anyone else there could do. I could braid my hair, put on a western hat and go hear live music. I could blow-out my hair, dress up, and go out for an evening with my husband. Now who am I with a mostly bald head and a shit show of a prognosis? 

I’m trying to figure that out. No one is ever the same once they get a “term-limit” diagnosis. I’m learning who I am now. I’m learning that I’m the person who can put on a beanie and go to the park and walk two miles every day. I’m the person who is going to perfect the comb-over and attend a live music performance wearing one of my favorite cowboy hats. I am the person who orders every “cancer hat” on Amazon. I may even be the person who eventually breaks down and shaves her head. Yes, that will scream “cancer” even more, but I may even become the person who doesn’t care about that. We shall see. 

Countdown

Cancer Diary

Countdown

Tonight is my last chemo pill for a month/4weeks/28 days. I’m pretty excited about not scheduling my evening meal early in order to take my antiemetic (aka - anti nausea) an hour after eating and an hour before taking my chemo. Timers have become a big part of my life. I will go back on a stronger chemo pill after the first of the year. Imagine my surprise when I just learned I’ve been on “chemo-lite.” Apparently one is not given the “big ass chemo” while also getting radiation. This is one of many examples of THINGS I DID NOT KNOW ABOUT CANCER. Maybe I was told and just didn’t process this tidbit, or perhaps this tidbit was on a need to know basis? Whatever, I’m excited about getting a month off, but at the same time I'm dreading the full dose of chemo I’ll start after the break. 

I only have two more radiation appointments. On Wednesday I will get to ring the bell. I’ve know about cancer patients ringing the bell - but (and this is a BIG but), I always thought ringing the bell meant one was cured. Silly me. It is a recognition of having completed a grueling treatment. I’m thrilled to be almost finished with radiation and I’ll happily ring the bell even if it doesn’t mean what I thought. 

I will admit that radiation kicked my ass. I have often used the expression of feeling like I’ve been hit by a Mack truck to describe feeling tired. I will admit I have never fully understood that expression. Now I know! I am embarrassed to complain about feeling bone-tired when so many other patients I see at the cancer center are experiencing symptoms that are far worse than fatigue. 

Now that I can see the treatment finish line, what’s next? First I recover from treatment. The timing couldn’t be better. I’m hoping I’ll have my energy back and will be able to fully participate in the Christmas festivities. I’m hoping I’ll be able to fully participate in day-to-day life. 

Second order of business is to figure out my next treatment option. I may have a choice of two options. I am waiting to be assessed for eligibility for an immunotherapy trial. Or I might choose to go with the next “standard of treatment” which is called an Optune Hat. Here’s an internet AI explanation: 

The Optune cap is a wearable medical device for treating glioblastoma (GBM), a serious brain cancer, using Tumor Treating Fields (TTFields) to disrupt cancer cell division. It looks like a mesh or electrode-lined cap worn on a shaved head for at least 18 hours daily, delivering low-intensity alternating electric fields that target fast-growing cancer cells while sparing healthy brain cells. Common side effects include scalp irritation, with benefits shown in extending survival when used with chemotherapy.  

I’ve got a month off to rest, heal, research, and make a decision about next treatment. I will also be spending time with family and friends. Frank and I are planning a beach trip. We are staying in Texas. We had a trip planned to Mexico, but I’m not comfortable leaving the country. I have PTSD from taking my cousin to an alternative cancer treatment center in Juarez, having a medical emergency, and trying to get out of the country and back to the U.S. for medical care. 

I am so grateful to everyone who has held me and my family in their good wishes, thoughts, prayers. I’m grateful for all of the messages and sweet gestures. I am grateful that you are accompanying me on this journey. Let’s countdown together and then get back to enjoying this wonderful life we’ve been given. 

Amanda Shires Is My Co-Pilot

Cancer Diary

Amanda Shires

You may be asking yourself, “What does Amanda Shires have to do with your cancer journey?” Or, maybe even, “Who is Amanda Shires?” For those of you who are not in the know, Amanda Shires is a hometown girl, whose career I’ve been following since the early 2000s when Frank and I became empty-nesters and began going out weekly to hear live music. We’ve watched this young woman grow from a shy teen to the strong Nashville performer she is today. We have all of her records and catch her performing live whenever we can. In fact, we have tickets to see her later this month touring with the Allman Betts Family Revival. Okay, that’s who she is, now what does she have to do with my cancer journey? 

All summer I was eagerly anticipating the September release of her newest album, Nobody’s Girl, dubbed as her “break-up” album following her divorce from alternative country music’s Jason Isbell. My cancer diagnosis took center stage so I lost track of the album release date. 

While in the hospital the first time, I had a 3:00 a.m. MRI where I was offered the choice of earplugs or headphones to listen to music. I chose the music. When asked what I’d like to listen to, I asked the technician if she had Amanda Shires’ new release. Remember, this was 3:00 a.m., I was disoriented and probably still in shock from my diagnosis. When I asked if she had this new album I was literally picturing a turntable and an assortment of record albums on hand in the MRI office. The technician said she could probably find it on Spotify, and she did.

  Amanda’s album was released just 3 hours before my MRI. I was able to listen to her singing through the awful sounds of the forty-five minute MRI. If you’ve never had an MRI, you lie in an enclosed tube and horrific screeching-thrumming noises reverberate through your entire body. Once the procedure was over I told the technician I hoped I had turned her on to a new musician, and bragged that she was from my hometown. I said this with the same enthusiasm of Buddy the Elf when he tells everyone he knows Santa. “Oh, really. Where are you from?” asked the technician. It was then that I realized we were in Lubbock, my hometown, and not on Mars, or Venus or in South America. That’s how disoriented I was. I felt a bit silly telling the tech I was from the very town we were both currently in the middle of. 

The day I was released from the hospital my daughter gave me a copy of the new vinyl album. I sat and listened to it while following along with the printed lyrics from the liner notes. Even though Amanda’s songs were written about heartbreak following a divorce, grief is grief. I was able to relate to every sad verse. I felt I had a comrade in my own devastation. 

Open communication with my family during this time of crisis was important. We began a group text and after several failed attempts to name the text group (Jenny’s got a Tumor, Jenny’s getting a Lobotomy) we landed on Bulletproof. “Bulletproof” is the title of an Amanda Shires’ song from an earlier album, Down Fell the Doves. 

Tiger bill gave me a tiger claw

From a real Siberian tiger's paw, he said

"This'll make you bulletproof"

So I got this tiger claw

From a real Siberian tiger paw

In my pocket

It's got me thinkin' now

What if I really could be bulletproof?

I visualized having a real Siberian tiger claw from a real Siberian tiger paw making me bulletproof. It’s nice to feel bulletproof! I’m even considering a tiger claw tattoo. 

Another Shires’ song of significance is “Break Out the Champagne” from her album To the Sunset. I feel like I’m living the shit show she references in the song. I’m trying to adopt the attitude the song is teaching. 

I said, “Break out the Champagne

If this is how we’re really going to go.

Let’s get on with the shit show. Let’s get on with the show.

So if you see me around town sporting a Siberian tiger claw tattoo and drinking from a bottle of champagne, you will know the answer to what does Amanda Shires have to do with my cancer journey. Thanks Amanda!

Thanksgiving

Cancer Diary

Thanksgiving

Cheesey post alert!

We know that Thanksgiving is a day to take stock of all we are grateful for. I have been trying to do that every day since my GBM diagnosis, but because it is Thanksgiving I am going to document some of the things I am most thankful for on this day of gratitude. 

I am thankful that I am not sick. Yes, I have an incurable cancer, but I am not sick. Sitting in the waiting room of the cancer center gives me the opportunity to meet other cancer patients. We don’t really talk about what type of cancer we have. I am still unsure of the cancer etiquette, but I suppose it’s rude to ask, “what are you here for.” However, I have gleaned from casual conversation that most of my fellow sufferers are there for curable cancers, yet they are much worse off than I. 

I am thankful I can eat a big Thanksgiving meal. I am thankful that I have not lost my ability to taste or to swallow food. I am thankful that I don’t have a feeding tube. I am thankful that I am not nauseous 24/7. I am thankful that the smell of food doesn’t turn my stomach. Even though I feel my appetite waning, I am thankful that I enjoy food, and that we have so many food choices this Thanksgiving.

I am thankful for the reason we have so many food choices this Thanksgiving. My daughter Carol Ann took on the task of planning and orchestrating the holiday meals. Not just Thanksgiving, but every meal from Wednesday through Sunday. I awoke on Wednesday morning with the overwhelming feeling of being behind on my Thanksgiving preparations. In past years I would spend the day before Thanksgiving making all of the side dishes, desserts, and appetizers. By Thanksgiving morning I would have been ready to bake the turkey and host a houseful of guests. This year I cannot do anything. I have no energy (fatigue is real). Plus, no one wants me preparing food while I’m shedding (my hair started falling out last week). Not being able to participate in the Thanksgiving food preparation came with an emotional toll I didn’t realize would happen. Just another reminder of what my life is like now, another reminder that I have cancer. As emotionally devastating as it is to not be able to cook, I am so grateful for daughters and sons-in-law who jump in and take over the holiday food responsibilities. And washing the dishes. 

Speaking of dishes - My daughter Courtney decided we should use the ancestors’ china. She unboxed my mother’s and Frank’s mother’s wedding china, dishes that have not been seen in almost 40 years. I grew up eating holiday meals on my mother’s gray and silver Bavarian china. My husband’s mother’s china is white and gold. We had a fun mix of family history and tradition on our Thanksgiving table. 

I am grateful for family. That seems like a given, but I know families who do not get along as well as mine. I am proud of the family we have created. I am grateful that they chose to spend this holiday with us. I am grateful for my extended family - for my siblings, my nieces and nephews, my cousins, my aunts and uncles, the in-laws and out-laws (as my daddy always said). Melding families is not always easy, but I am grateful to my co-madre Annette for all the cooking and holiday fun she brings. 

Insert entire chapter about my grandchildren here! I could go on and on about them, but I want to post this today, so I’ll just say - they are the absolute best! I cannot find the words to express my feelings for them. 

I have the rest of the week to bask in the love of my family. We have good food, a warm house, lots of dogs (mine, plus 4 more = 5 pups to love on), and fun activities planned. It does not get any better than this. I am truly a lucky woman! 

The Hits Just Keep Coming

Cancer Diary

The Hits Just Keep Coming

On the day I experienced the first symptoms of what became my Glioblastoma diagnosis, I had a routine annual appointment with my dermatologist. I was experiencing what I now know were ocular seizures, but I tried not to worry about the disco ball light show because I was listening to my dermatologist tell me I had some pre-cancerous spots and one that he especially didn’t like the look of. 

I had two pre-cancerous spots frozen off of my face. My grandmother always referred to her annual dermatologist appointment as “having her barnacles scraped.” I was getting scraped too. The spot my doctor didn’t like was on my left cheek. My face cheek, not my butt cheek - which I ended up explaining to other doctors many times over the next month. The scraping was a biopsy of the suspicious spot. 

This was a week before I was attending my god-daughter’s wedding. My sister was going as my “plus one,” and coincidentally she had a dermatologist appointment that week too. We joked that if she had to have anything frozen off we would show up at the wedding looking like 2 of the 3 Sanderson sisters. (The witches from Hocus Pocus.) Fortunately, she escaped the liquid nitrogen at her appointment and I was able to cover my wounds with makeup and/or bandaids. 

Two days before I left for the wedding I got a call from the dermatologist’s office telling me that the biopsy results were in and that I had squamous cell carcinoma. It was explained to me that there are 3 types of skin cancer - Basal Cell, Squamous Cell, and Melanoma. I didn’t have the worst one, but I didn’t have the best one. They could get me in that weekend for a Mohs Procedure. (Mohs surgery is a precise surgical procedure primarily for skin cancer, where the surgeon removes thin layers of cancerous tissue, analyzes them under a microscope in real-time, and removes more tissue only from the areas where cancer cells remain.) I couldn’t schedule the weekend appointment because I would be in Georgia for a wedding, so I was scheduled for late October. I liked this timing as the procedure would fall after my 50-year high school reunion. I did not want to attend my reunion with a large wound on my cheek. (My face cheek!) 

Quite a lot happened as soon as I got home from the wedding. I had the testing my PCP ordered that led to my Glioblastoma diagnosis and I had brain surgery to remove the tumor. Dealing with the Mohs Procedure was not high on my priority list. When I got a call from the dermatologist letting me know they could get me in earlier, I went ahead and took the appointment, knowing I wasn’t attending my high school reunion due to the brain surgery anyway. 

I second guessed why I was even having the skin cancer removed. I had just been told I had an incurable brain cancer - why was I going to go through the motions of dealing with the skin cancer? I convinced myself that a “normal person” would want their skin cancer removed. I was going to try to be normal. 

I had the Mohs Procedure on 10/11, less than two weeks after brain surgery. Of the two surgeries, the Mohs was by far the more painful. Seriously. I ended up with about a 4-inch incision on my cheek (my face cheek). With the stitches I looked like I had a starring role in The Bride of Frankenstein. 

Lucky for me, the wound healed nicely and the scar is not bad at all. Believe it or not, I do not even care. What once would have been a big deal to me, (“Vanity, thy name is woman”) is no big thing to me now. I’m noticing there are a lot of things that have taken on less importance. Funny how a life threatening illness can change your priorities!