MILESTONES

7/19/21

It’s been five years since the pain I experienced while taking a deep breath took me to the ER which led to a stage 4 non-small cell lung cancer diagnosis. Five years of chemotherapy treatments. Five years of hair loss and hair gain. Five years of weight loss and weight gain. Five years of saying hello, we are on this path together and goodby, it is an honor to know you – see you on the other side. Five years of devastatingly painful losses and still, five years of encouraging gains. During this five years we’ve maneuvered through a pandemic. Didn’t see that one coming but didn’t see cancer coming either so there’s that. Most importantly, five years of experiencing profound love and five years of living in the moment.

Five years is a significant benchmark in lung cancer speak.  With the advent of targeted therapies and immunotherapies, the five year survival rate has increased and for this we can thank our researchers because research matters and research along with exceptional care from so many has been instrumental in extending my life. This along with the multitudes of prayers, good wishes, good energy, good friends, good family and good luck.

I am eternally grateful.

Another milestone – forty years since my knight and I exchanged rings and I do’s. We have definitely tested the “for better or for worse, in sickness and in health” portion of our vows. We’ve been in step and at times out of step with each other over the years, hands clasped, daring threatening obstacles to pull us apart. The learning and loving has never stopped, my love, no matter the years, no matter the obstacles. And again I say, how lucky am I to be riding the waves with you my strong and sensitive knight.

Grammy update: Ben is growing strong and is an absolute delight. We take every opportunity we are given to spend as much time with him and his parents as possible. He has discovered and is enthralled with his voice and just like his Mom at this age, is perfecting his whistle register. Rocky the dog is having a very difficult time with the pitch and volume but Ben is beyond thrilled with his new ability and practices often. The way that he forms his small mouth and directs his breath up into his head space before he “sings” is remarkable. We can remember our daughter singing herself to sleep at night and we are told that Ben is doing the same. I know that his momma sings to him with her beautiful voice as well and my heart is content. May music feed his soul as it has fed mine.

Trial update: Latest scans remain stable.  WHOOP!  My sixteenth treatment of DS-8201a was this past Thursday which happened to be the same day The White Ribbon Project (#TheWRP4LC) presented a white ribbon to Dr. Richard Schulick, Director of the Colorado University Cancer Care Clinic. It was my honor to be asked to coordinate the presentation with CU.  Dr. Ross Camidge and Dr. Tejas Patil, my oncologists, along with Josh Saginaw, RN, my clinical trials coordinator and a slew of coordinators, nurses, researchers, survivors, caregivers and advocates gave their time and showed their support. It can’t be underestimated the impact gained when the medical community joins with survivors and advocates shining a light on the fact that anyone can get lung cancer. Together, we challenge the stigma surrounding lung cancer and shine a light on the need for fair funding and continued lung cancer research.

My treatment side effects are somewhat unpredictable in their severity. Mostly I deal with nausea and fatigue for the first week or so after treatment and this I can handle with the help of acupuncture, IV fluids, anti-nausea meds and rest.

More support for www.thewhiteribbonproject.org came from SkyRidge Medical Center where two and one-half years ago I received five rounds of SBRT (stereotactic body radiation therapy).  Dr. Mark Edson gathered his staff of familiar faces and with “Varian” in the background we took a few pictures.  My friend Heidi, whom Dr. Edson also treated, and her husband Pierre invited us to attend the spur of the moment photo opportunity and other than some radiation treatment PTSD which Heidi and I shared, it was great to see these exceptional and caring professionals again.

Who knows what the five year survival percentage will be; in five more years. I have very high hopes that we will continue to break barriers and reach well beyond the current five year survival rate which for me and others diagnosed with stage four lung cancer, is – 7%. (American Cancer Society)

Milestones. Time to set some new ones.

p.s. www.surviveit.org update: We are expanding our navigation tool to include colon and pancreatic cancers! Thank you for your donations during Giving Week which has made this possible.

Rainy Days and Mondays

May 3, 2021

It seems unusual for those of us in Denver to have two days of rain in a row.  Overcast skies, consistent drizzle, rarely used umbrellas under the pile of equally rarely used rain gear dug out and put to use.  I remember when I was a kid spending weekends and sometimes weeks in the mountains that surrounded our valley home.  Every afternoon we could count on rain in the mountains, every single afternoon. Our sneakers got wet, our rain ponchos were seldom dry. Today, I’m watching the rain wash away the dust and grime that has settled on the trees and bushes surrounding our home.  Watching tulips emerge from the damp and yielding soil and the trees as they begin pushing their leaves, searching for the sunshine soon to follow is breathtaking.

My latest scans remain stable with more slight reduction in the watched tumors.  We are all very happy with the results the clinical trial drug is producing and hope that I can stay with this treatment for many, many more months.  The side effects remain the same; days of nausea and fatigue followed by days feeling good with varying degrees of both. Each time can be different. I’ll be getting scans again next week along with my every twelve week echocardiogram followed by lucky treatment number thirteen. This will make eight months on DS8201a, a combination of drugs targeting the HER2 receptors on my cancer cells while linking and delivering a chemotherapy drug.

In other news, I’ve been excited about my fellow lung cancer survivor friend Heidi and her husband Pierre’s labor of love, “The White Ribbon Project”.  If you’ve been by my house, you will see a large white ribbon on our front door.  Heidi and Pierre started making these last year for Lung Cancer Awareness Month and very generously delivered them to nearby friends living with lung cancer.  They have now made and delivered hundreds through out the US and it has become an amazing grass roots movement with survivors, caregivers, major cancer centers and oncology teams supporting their efforts.  What’s so special about these white ribbons?  They are a tangible symbol for changing the public perception of lung cancer while raising awareness that anyone with lungs can get lung cancer. You can follow them at #thewhiteribbonproject.

I’ll also be sharing in a later post SURVIVEiT’s latest news and our fundraising efforts for 2021. http://www.surviveit.org.

And finally, I wanted to share with you that our baby grandson is doing GREAT!  He was in the NICU at University Hospital for four weeks, was released to go home with supplemental oxygen and is now thriving without the supplemental support.  He’s growing and showing off his well earned baby rolls and his parents are trying to find time to sleep as this little one likes to keep his sleep schedule a guessing game. Jim and I were able to help out for a week in April and I see many road trips back and forth in our future. Thanks to all who sent messages and prayers throughout his NICU stay. 

Here’s my favorite picture to date of Grammy and Ben. I’m in love…

BIG MAC ATTACK

September 9, 2020

“Two all beef patties special sauce lettuce cheese pickles onions on a sesame seed bun.”

I pretty much adhere to a plant based diet.  Fish and chicken will find their way onto my plate for additional protein which I must stay aware of as it tends to drop easily according to my bloodwork.  But red meat appears rarely on my menu. I don’t have a problem making it for my knight in shining armor and I don’t have a problem saying no to the aroma or the flavor. Drive through fast food however occurs only when there are no other options and I try very hard to make sure there are other options. Imagine my surprise when I had a craving, and I mean a CRAVING yesterday for a Big Mac, a dietary delight I haven’t ingested in over thirty years. The experience was delightful even if I only ate half of it.  I’ve decided it’s all about the special sauce which squishes into the melted cheese on the hamburger patty which squishes onto the sesame seed bun with just a hint of pickle.  Suffice it to say that my craving was well rewarded.

I passed all the pre-screening tests for clinical trial DS-8201a and on September 1, I received my first dose. For those in the Lung Cancer community, you can refer to the DESTINY-Lung01 interim results that were presented at ASCO 2020, pretty exciting findings for those with HER2 metastatic NSCLC. No pre-meds are given with the first dose which runs for ninety minutes followed by a blood draw and then three to five hours later, a final blood draw.  Blood is held in high esteem as eleven tubes were drawn before the excitement could begin and I found myself wishing for a glass of orange juice and a cookie as I left the lab to proceed with my ten hour day.  I left tired but encouraged as I didn’t experience any infusion reactions and other than the long day, all went well. 

 Dr. Tejas Patil is my oncologist for this trial. He is quite brilliant and I am not shy in asking him questions which he spends time answering and explaining with hand drawn pictures and study printouts he shares with me. Oh yes, we are getting along famously. I’m also happy to report that Candice (PA), Nikki (trial coordinator) and Dana (Dr. Camidge’s nurse) are following me with this trial as well so there is needed and appreciated consistency and concerted care.

On day two I noticed some nausea and fatigue, and with each subsequent day the nausea and fatigue increased until I was having a very difficult time eating, drinking and staying awake.  I tried all my magic, acupuncture, ginger, more ginger, THC and eventually Compazine which barely took the edge off.  Yesterday, five pounds down and fairly miserable, I had an appointment for more bloodwork and a quick appointment with Candice who ordered a liter of IV fluids, dex and Kytril (antiemetic) and on the way home, the CRAVING hit with a vengeance.  

“Honey, I need a Big Mac!”

“You’re kidding???”

“NOPE! Like I really need one!”

I could barely get home before I opened the bag.

I can go back for more IV fluids if needed and I have an Rx for Kytril which I took again this morning.  The nausea is low grade right now and is a very common side effect of this drug. Everyone responds differently but the info on the patient sites for this drug are full of antidotes and stories, I am in good company and far from unusual.  I’m not sure if Big Mac’s will be added on a regular basis, I might branch out to an occasional Whopper or Bud’s has a pretty spectacular burger I’m told.

  Let’s just say, nothing is off the table.

For your throwback viewing pleasure 🙂

https://www.youtube.com/watch?v=dK2qBbDn5W0

P.S. –  SURVIVEiT fundraising update:

The Indiegogo and private donation campaign was a great success!  Over $41,477.00 to date to help launch the Cancer COPiLOT.  If you would still like to make a donation, you can visit our website: www.surviveit.org.

I was also asked to write a guest blog about my experience participating in a clinical trial during the pandemic.  Here is the link: https://www.surviveit.org/newsroom/bending-without-breaking-cancer-covid-19-navigating-now/