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!

Don't Forget the Sunscreen

Cancer Diary

Don’t Forget the Sunscreen

Don’t forget the sunscreen. An odd directive from your neurosurgeon. I was given a pre-op medication to “light up” my brain tumor, enabling maximum removal. Interestingly, a side effect of this medication is any light, even from a lamp or fluorescent hallway light, will cause an extreme sunburn. A sunburn all of the O.R. nurses assured me I did not want.

“Bring sunscreen, but wait until after surgery to put it on,” were my instructions. (Which tells me a lot of patients probably put it on before surgery.)

The lights in my hospital room were turned off for 48 hours. My daughter brought in a small book light we set up in the bathroom so I didn’t have to “go” in the dark. Nurses even used a small flashlight when they came in to check my vitals. 

I had to walk right after surgery. Several times a day a nurse or a physical therapist or my daughters walked me through the hospital corridors. To make these walks I had to sunscreen as if I were going to the beach for the day, then shroud myself from head to foot with a sheet. I looked like a ghostly specter roaming the halls. It was October, right before Halloween, so at least I was in season. I’m pretty sure I scared the hell out of the other patients on my floor. 

Even when I was taken for testing and being pushed from floor to floor and tower to tower in my hospital bed I had to be fully covered. Read: Sheet over my head. I looked like a dead body headed for the morgue. 

Believe it or not, it wasn’t too bad having to walk immediately after brain surgery. I was deemed a “fall risk,” and I had the wristband and color-coded hospital gown to prove it. My oldest daughter, know for her penchant for bad Dad Jokes, said she preferred to say I was an “autumn risk.” (Insert groan here.) Adding to the danger of falling was the loss of vision in my left eye, no depth perception, no peripheral awareness on the left. Then add the sheet draped over my head and obscuring the vision in my good eye. Plus the dimmed lighting in the hallway to prevent the sunburn. I think I am painting a picture of a pretty sad walk (or a hilarious walk, depending on your sense of humor).

After the 48-hour sunburn risk was over and I no longer had to be sunscreened, shrouded, or in the dark I think the nurses and physical therapists were surprised to see I could actually walk without assistance. 

Who knew a risk of a severe sunburn would be part of my brain surgery experience? Don’t forget the sunscreen!

Doctors

Cancer Diary

Doctors

When you’re diagnosed with a brain tumor at 8:00 a.m. and are checked into the hospital 5 hours later, it’s difficult to research your illness, get a second opinion, or choose your doctors. Things were moving quickly and I knew that was important. 

It did occur to me that I had options. I have family in Houston and New York City. Everyone knows that M.D. Anderson and Sloan Kettering are the best cancer centers in the U.S., but we felt good about the care we could get in our hometown. Being home was best for us. We discussed other options, but knew any change of hospital would cause delays. 

I wasn’t quite sure how everything was happening so quickly. I thought it was just a ‘crap shoot’ as far as the doctors I was ending up with, but later learned my PCP was making the referrals for my medical care team. I feel like I got the A-Team. My little brother vetted the neurosurgeon and told me that if I’d had the opportunity to hand-pick a doctor, this is who I would have chosen. The neurosurgeon (aka BRAIN SURGEON - OMG, seriously, a BRAIN SURGEON!) was so kind and spent lots of time answering my questions and questions from my family. It was interesting to learn that his schedule was open for me only because his wife was also scheduled for surgery and they ran into an insurance glitch that caused them to postpone her surgery. Yes, even doctors have insurance issues. 

I didn’t meet the anesthesiologist until I was in pre-op. Another precious doctor. He introduced himself and told me I was going to be his mother-in-law for the day. His actual mother-in-law was having surgery at the same time, but because of their familial relationship he wasn’t attending her, but me. He promised he would take special care of me as his stand-in mother-in-law. I was touched. When my daughters were able to join me in pre-op, they asked me to make sure he liked his mother-in-law. In the operating room I asked and he assured me that he loved his mother-in-law. That’s the last thing I remember until I woke up in recovery. 

Crazy that one can have brain surgery and wake up in no pain. How is that even possible? I awoke in recovery to a conversation between my brother and the surgeon discussing titanium. I thought they were taking about golf clubs, but soon put it together and realized they were referencing the plate in my head! I was assured I would not set off alarms at TSA. 

I am so grateful to all of my doctors, and I have a lot. Every medical professional I have encountered on this journey has been a gift. From the CNA who left me an index card with inspirational music suggestions, to the neurology nurses who sat up with me during a 2:00 a.m. meltdown, to the social worker, nurse navigator, volunteers at the cancer center, all the way up to the “big-dog” oncologist and neurologist - everyone has been over-the-top kind and caring. 

I am full of gratitude for the healthcare we have access to in our own backyard. It is 3.8 miles from my house to the cancer center. It takes us less than ten minutes to get there, and there is no traffic. I cannot imagine having to deal with Houston traffic or New York subways or cabs to get to daily treatment. Unless I qualify for a trial at a different cancer center I won’t have the stress involved with being out of town. This means a lot to me and to my family. 

I feel a little like Dorothy in the Wizard of Oz when she realized that everything she wanted or needed was always right in her own backyard. 

We’re Going to Have a Fun Weekend, Dammit

Cancer Diary

We’re Going to Have a Fun Weekend, Dammit

I was released from the hospital for the weekend prior to BRAIN SURGERY, which was scheduled for Wednesday October 1, 2025. After lots of tests, another MRI, a CT Scan, an EEG, and probably others I can’t remember I got to go home to spend a few days with my family. My daughters and my husband had tagged-teamed the three days at the hospital with me. Now that we were being “furloughed” I was ordered to have fun. I have to say that when you are looking at a few days to live your best life before having brain surgery it is a bit daunting to come up with fun. 

So, what did we do? We went to Costco. Yep, Costco. We went up and down every aisle as a family group of five. We bought all the fun stuff, the ridiculous snacks, the necessities, and the not so necessary. Then we ate cheap, but delicious Costco hotdogs near the check out stands. That was fun! We also went to the fanciest restaurant for fancy food where I had my first glass of wine in almost three years. (I gave up alcohol in 2022 and one of the first things I said after my diagnosis was, “I gave up wine for this!”) 

    We watched movies. We watched the movie Arthur with Dudley Moore and laughed and cried. We ate tons of good food, I having decided that life was literally too short to worry anymore about my weight. We cried a lot, we laughed a lot, we tried to figure out the new medications I was now on, we worried about the surgery. But, mostly we did have a good weekend. 

My oldest daughter, who had flown in immediately from her home in New York, had a previous job at the Columbia University Library in the Oral History Department. She brought her fancy recording devices and over the course of her 10 days here we recorded 14 hours of my history. I felt like I was on a season of This is Your Life Jenifer Smith. She led me through my childhood, my relationships with my parents and siblings, my years of schooling, my love affair with my husband, my time as a young mother, my career, my friends, my extended family, everything. It was a beautiful gift that she was able to walk me through my fabulous life and record it for my grandchildren to one day have. But the best thing about it is now when I tell anyone that I have led a wonderful and full life and that I have no regrets, I have documented proof that that is true! 

There was a lot of serendipity that weekend. My little brother from Houston surprised me and came into town to be with us before, during, and after the surgery. My sister, also from Houston, organized a family text group to keep everyone apprised of my situation. She was also my gatekeeper, screening calls and messages. I was able to have a previously scheduled dinner with my close girlfriends to tell them in person what was happening and I had time to let others know of my situation before I went back into the hospital for surgery. 

By the time we had to report back to the hospital at the crack of dawn on Wednesday, October 1, I felt like I was wrapped in protective quilt batting. I had been nourished in body and spirit by the love and kindness of my family and friends. I was ready.