New Year – New News – New Plans

January 9, 2024

Did you see the fireworks? Did you feel the energy shift from one year to the next? Did you say goodbye to 2023 with gratitude or regret? Did you welcome the New Year with optimism or pessimism? Are you ready?

Ready for what? I’ve been gazing through the looking glass seeing a familiar world that is somehow, once again, turned inside out. 

There are many changes that culminated for me at the end of 2023. After spending hours on the phone over multiple days followed by three hours waiting in line at my local Social Security office, I am now officially a Medicare recipient! Turning sixty-five at one time seemed like an event that would take place in a distant future that I would somehow be better prepared for. While on the phone listening to irritating music and repeated messages telling me that I could always “go to the website” I wanted to yell at someone…anyone…so that I didn’t have to feel the emotions boiling up inside of me. I found my frustration morphing into anger at the unfairness that aging can at times seem to inflict upon us. All said and done, everything fell into right time and place and I re-committed to focusing my attention on living life to the best of my fluctuating abilities, whatever that looks like, grateful that I made it to sixty-five.

Big change number two – after over thirty years, I also am no longer a Kaiser Permanente member. As of January 1, I began receiving my care at the University of Colorado Cancer Center under the expert care of Dr. Tejas Patil who was my oncologist during my clinical trial on Enhertu. I am in excellent hands and I am comfortable with the decisions I have made. Embracing the unknown, as every cancer patient knows well, can take a toll on our mental and physical well being. Living with a cancer diagnosis has opened my awareness to the possibilities of what could and can be. Learning to look forward with awe to what is yet to be discovered and who I will meet along the way continues to be enlightening as well as fulfilling. I look forward to taking these next steps with my new team at UC Cancer Center.

Compounding the timing for this switch was a second brain MRI on November 27 confirming the cancer has metastasized to my brain. Life changing, yes, but it can be dealt with. I have come face to face with similar challenges in the past. Dr. Patil gave a referral to the amazing Dr. Sana Kamara, radiation oncologist and professor at UC, and a plan is being developed. I will be getting more scans in the next few weeks and we will go from there. Right now we know that the brain lesions are all sub-centimeter and hopefully can be addressed with SRS (Stereotactic Radiosurgery).

Another challenge has been that the drug I have been receiving for the past nineteen months is being discontinued by the drug company. This has been a shocking blow to those in the EGFR Exon20/HER2 community as a potential line of treatment will no longer be available. The drug company has promised that those who are currently taking Mobocertinib and doing well will have access through compassionate use for as long as needed. The good news is that there are new drugs in the clinical trial pipeline which will hopefully fill the newly created gaps in treatment options for this lung cancer sub-group, yet another example of living with the unknown.

Where do I fall in this scenario? I am now taking a chemo drug that has better known efficacy for passing through the blood brain barrier (BBB). We will continue PET/CT scans to determine how the new treatment is working and monitor available clinical trials that I might qualify for if/when I need other options. I find that resiliency is once again called for. I will see Dr. Patil next week and we will update plans. In the meantime, I want to thank my friends from all over the cancer community, research, pharma, patients and advocates who have offered advice, suggestions and overall support as I meet another obstacle. I am inspired by you and grateful for you.

So 2023 has ended with a BANG! All things considered, I think there is reason for hope. Seven and a half years ago, statistics said that I wouldn’t be here today, but medicine and magic are working beautifully! 

My best wishes for you and yours in the New Year!