Update, Mostly About the Weather

Cancer Diary

Update, Mostly About the Weather

2026 has been a whirlwind! During January and February we were in New York three separate times for a total of 32 days. That’s a lot of travel and a long time to be away from home. 

I recounted the first trip and the complications with the first clinical trial vaccine in my last blog. The next three vaccines went smoothly, it was the weather that complicated things. 

On January 23, 2026 we hurriedly rescheduled our flight to New York in order to get out of Texas ahead of the winter storm arriving that day. We were on the last flight out of Dallas before snow shut everything down. We arrived in New York as a winter storm hit that region of the country also. I was grateful to have made it because the second vaccine of my clinical trial was scheduled for 1/27. This was our second trip to New York this year, my first vaccine was two weeks earlier.

Because of family events, or what I like to call SILVER LININGS, we stayed in New York for twenty-two days, thirteen of those days were below freezing. I was able to get to NYU Langone Medical Center for vaccines two and three in spite of the snow and freezing temperatures.

Another silver lining was getting to bring our grandkids home to Lubbock for the week of their Winter Break. It was wonderful to leave the snow and cold and enjoy 70 degree temperatures in Texas. We even had a “good ole” west Texas dust storm. We flew the kids home on Sunday 2/22, and guess what? We flew directly into the New York blizzard! The pilot in Dallas even announced, “This is your last chance to get off of the plane.” We didn’t have a choice. We had to get the grandkids back for school and me there for my 4th vaccine. 

I am very grateful that we made it into New York with no delays or cancellations. The cab ride from the airport to my daughter’s apartment was very “blizzard-y.” The next day the entire city was under a travel ban and schools were closed. New York sure knows how to clean up after a blizzard! We had no trouble taking an Uber to the Medical Center for my 4th vaccine. What a relief. Now that I’ve had what they call the “priming dose,” the every two week vaccines, I am shifting to an every two month vaccine. 

We flew home the next day, in the snow, and very much delayed. We missed our connection in Houston, but were booked on the next (and last) flight to Lubbock. It is great to be home! 

Now what? Monthly chemo, lots and lots of doctor’s appointments, and a scan (MRI) on Friday the 13th that will let us know what this cancer is doing inside my brain. I am very thankful for all of the prayers and good intentions being sent my way. Keep ‘em coming!  

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!