Applying the rule of law to pregnancy

The rule of law should be equally applied to all, don’t you think? So, if the only reason to have sex is to create babies and carry them to term so they can have life, liberty, and the pursuit of happiness, and any pregnant person MUST carry the pregnancy to term no matter the impact on the mother’s life,

then …

We must ensure all potential parents are at least as prepared for parenting as adoptive parents are required to be.

These guidelines should help.

1. All males must be sterilized at puberty. No pregnancy can occur without male input.

2. A male can have sterilization reversed ONLY when they prove they:

  • want to raise children,
  • have acceptable parenting skills, and
  • are able to support children in an acceptable home environment.

3. A male may only engage in sex with a person who:

  • explicitly states in writing that they are willing and able to bear and raise a child with that specific male, and
  • can prove that they are able to support a child should something happen to the male.

4. Any male who violates these rules will be:

  • immediately and permanently sterilized,
  • jailed for 9 months while wearing a pregnancy suit,
  • required to work in the jail’s diaper service for another 4 years,
  • for the next 30 years after release from jail, required to work in a minimum-wage job while paying a monthly “standardized offspring support fee” calculated to equal 50% of food, housing, education, daycare, and medical bills for a child with a disabling condition.

I wonder how many men that would leave to run the country?


When there’s a will, there’s a footprint

My decluttering efforts have turned to digital file purging and consolidation. This was prompted in part by a desire to dispose of old PCs and peripherals at an upcoming free eCycle event. I’m also interested in reducing the size of my email file before it crashes (again). However, this obsession is mostly driven by revising our estate documents this year.

No, I’m not dying. I’m just trying to make things easier for those who will remain when I DO inevitably die. It’s been 13 years since our last revision of estate documents. A lot of life happens in 13 years. And lot of laws change, too.

Today’s wills now include a “digital estate”– social media presence, files on computer and storage media, passwords, online accounts and backups. I know how time-consuming it was sorting through the 60+ boxes of papers my parents left behind. To avoid having my name eternally cursed by those who will inherit and/or manage my my digital estate after I’m gone, I intend to tame the massive collection of data generated by 40+ years of evolving technology. I’m taking responsibility for my own mess.

My goal is to get everything organized on one LARGE external hard drive, with a few essential estate-related documents on ONE flash drive.

Yeah. I hear you: “Good luck with that.” It’s a big job.

I’ve been using various incarnations of computers since 1975 for school and work. I built my first “computer” using a wire-wrap board and an Intel 8080 chip shortly after graduating from college. My personal collection of data started around 1980, when I received a TRS-80 with dual floppies from my older brother Michael. I wrote my graduate thesis on that machine. Gradually I added new uses: dial-up modems, Compuserve, Kermit file transfers, email, web surfing, finances, taxes, archiving pictures from digital cameras, digital music, graphic design, presentations, website creation … the list continues to grow.

As the tech support for our household of three, I’ve set up, maintained, and networked approximately one new PC per person every 5 years since the mid-90s. That generates a LOT of outdated machines and boxes of media. Not all of it has aged well. So far I’ve found 11 different forms of digital media in our house. In order of obsolescence:
— 5-inch floppy disk (I recently destroyed those using scissors)
— 3.5-inch floppy disk
— SCSI internal hard drive
— SATA internal hard drive
— Zip drive
— XD card
— SD card
— Micro SD card
— CD/DVD disc
— USB flash drive
— External hard drive (current count = 8, with archives created by up to 5 backup programs)

I’d love to say I can safely ditch files older than, say, 7 years. However, I have older digital pictures, presentations, writing, medical records and travel memories I want to keep. It’s also probably a good idea for me to keep selected receipts that document cost basis and value for the house and big-ticket purchases, like furniture. And I legally must keep certain files related to fiduciary and corporate matters.

Although new PCs can read disks formatted by older Windows machines, some files and media are no longer useable because the program that created them isn’t available and/or compatible on newer operating systems. Some files can be converted to newer software versions, some can’t. So, before disposing of an old PC or peripheral, I have to be sure I won’t accidentally eliminate my only way to read certain types of media. I’m keeping an offline Windows 7 machine for the summer so I can archive as many file and media types as possible.

The upshot of all this is, I must comb through ALL the files. If I don’t do it, someone else will have to do it (or just destroy it all in a fit of hopelessness). I hope to be finished by fall.

Digital decluttering ain’t for sissies.

Eleven Years and Counting …

Today marks 11 years since I was first diagnosed with advanced lung cancer.

Eleven years with the mostly deadly cancer. Imagine that!

When I was diagnosed, my life expectancy was 2 years on the outside, and that was higher than the average because I was relatively young and otherwise healthy. The majority of lung cancer patients died within a year of diagnosis.

Thanks to online patient communities, targeted therapies, biomarker testing, clinical trials, and dedicated clinicians like Dr. Ross Camidge, whose smiling face appears next to mine in this picture, I’m still here. These things, along with additional new treatments like immunotherapy, new biomarkers, lung cancer screening, and ongoing medical research are changing the face of lung cancer. The expected survival of advanced lung cancer patients has risen by several YEARS since I was diagnosed.

Today, I’m grateful. Grateful for the medical research and treatments that have kept me alive with a good quality of life. Grateful for the additional time I’ve had with my family and this amazing universe. Grateful for finding a new purpose as a lung cancer research advocate collaborating on The ROS1ders, IASLC Supportive Training for Advocates on Research and Science (STARS), and other projects. And especially, I’m grateful for the wonderful friends and colleagues I’ve met along the way.

My prayer is that someday ALL people will have ready access to effective treatments and compassionate care for their health conditions, no matter what they look like, where they live, how much money they have, or how others believe they should be treated.

ACTION ALERT! Please help increase federal research funding for lung cancer. #LCSM

GO2 Foundation for Lung Cancer (with the support of the entire lung cancer community) has submitted an appropriations request of $60M in the FY23 Defense Appropriations Bill with a goal to increase funding for the Department of Defense Lung Cancer Research Program (DOD LCRP) to $60M from its current $20M. The entire lung cancer community is joining forces to make it happen!

It takes only a couple of minutes to make your voice heard. But when all our voices join together, it becomes a ROAR.

Please click the link below and follow the instructions to tell your US Senator & Representatives to support $60 million for federal lung cancer research in 2023. Tell your friends & family. Please share widely on all your social media platforms.

HURRY! The House letter deadline is April 26 and Senate letter deadline is May 12, so don’t wait. 

Click here: Act NOW to request $60 million for #lungcancer research

When you see someone masked, please be kind

Today Washington’s state-wide mask mandate is gone (though masks are still required in some settings). When you see people still wearing masks, please don’t give us a hard time. You don’t know the health conditions we or people we love may have.

The mask mandate is gone, but the COVID-19 virus is not. Medical research has collected data that shows certain populations are at higher risk of severe or fatal COVID-19 if exposed to it. Older people, especially those over age 80, have less effective immune systems.

Sometimes people are at greater risk because of physical issues. My lungs have been damaged by radiation treatment for lung cancer, and are unable to clear nasties as effectively as they once did. I’ve had pneumonia several times since my cancer diagnosis nearly 11 years ago. Hospital data shows people with some chronic conditions like heart disease and diabetes are more likely to get severely ill if they get the virus.

Some people are at greater risk due to compromised immune systems. Medical treatments like chemotherapy or high-dose steroids impair the immune system. Very young children have immature immune systems.

It’s not a given we’ll get severely sick, but the odds are not in our favor. We’re into risk reduction. Medical data show KN95 and N95 masks reduce the likelihood of catching COVID-19. Our doctors suggest we should wear masks when in public. The CDC recommends we continue to wear masks. More data is needed for those of us at increased risk before we take off our masks.

When you encounter someone wearing a mask, or resistant to indoor dining in restaurants, or unwilling to attend a event with a large group, please be kind.

All good things … The Sunset of #LCSM Chat

“All good things must come to an end.” Please join us for our last-ever #LCSM Chat on Thursday December 2, 2021 at 5 pm Pacific. Take time to check in, reminisce & come together as a community one last time.

I’ve been a co-moderator for #LCSM Chat since shortly after it started in 2013. I must admit, it’s hard to see it end. I created its website. I wrote/posted most of its blogs. I worked with guests to create patient-friendly content. I’ve made many friends and connections. But it’s time for this to happen. It just represents a change in priorities–I have more than enough advocacy, writing, and personal projects to keep me busy.

So, on to what’s next.

Please read more at the #LCSM Chat blog to understand why this is a good time to “sunset”:

Help me celebrate nine years of effective targeted ROS1+ cancer therapy! 

In May 2011—over 10 years ago–I was diagnosed with advanced lung cancer.  At that time, chemo and radiation were the only approved first line treatments for advanced or metastatic lung cancer. Despite undergoing chemo and radiation (twice), my cancer spread to my other lung and became metastatic. I was not inspired by the five-year survival rate for metastatic lung cancer patients back then—it was around 2%.

However, in early 2011 a small clinical trial for a targeted therapy pill called crizotinib (trade name Xalkori) had begun for ROS1 positive (ROS1+) lung cancer. This cancer is driven by an acquired alteration in the ROS1 gene. This pill that sounded like an alien seemed to inhibit ROS1+ cancer in about 80% of people in the trial. That was amazingly effective for a cancer drug!

In the fall of 2012, I arranged to have my tumor tissue tested and discovered my cancer was ROS1+.  I mentioned the clinical trial option to my oncologist, and he recommended I join the trial (even though it required travel) because the preliminary trial results looked promising. All he could offer me otherwise was a lifetime on a chemo that didn’t make me feel much like living.

I enrolled in the trial in Denver, Colorado—over 1000 away from home—on November 6, 2012, and hoped for the best.

I’m still here thanks to research. Today marks 9 years since I took my first crizotinib pill. I have had No Evidence of Disease (meaning no cancer shows up on any scans) ever since.  Although I’m incredibly grateful to be alive and have a relatively normal life with tolerable side effects, I’m always looking over my shoulder.  No one can tell me if I’m cured, because few others have been on the drug this long.  Most patients find their cancer eventually becomes resistant to crizotinib and their cancer resumes growing.  The population of ROS1+ patients is relatively small (only 1-2% of lung cancer patients have ROS1+ cancer), so research on our type of cancer is sparse. We have some clinical trials in process, but no second line targeted therapy has yet been shown effective enough to obtain any government approval.

That’s why Lisa Goldman, Tori Tomalia (may she rest in peace) and I–all people who had ROS1+ lung cancer–decided to do something about it.  In the spring of 2015 we created a Facebook group for patients and caregivers dealing with ROS1+ cancer, and eventually formed a nonprofit known as The ROS1ders.  Our mission is to improve outcomes for all ROS1+ cancers through community, education, and research.  We have almost 800 members spanning 30+ countries, and are considered experts in our disease by some of the top oncologists in the world.  We’ve already helped create new models of ROS1 cancer that researchers have used in published research.

We’re now planning a research roundtable in December to explore ways to collect real-world data on ROS1+ cancers, and will be hosting a ROS1 Shark Tank event next spring that will award two $50,000 seed grants for new ROS1 projects. We’re aiming to raise $100,000 this year to fund our work.

Cancer research advocacy is my passion. I’m able to use my skills and time to help make a difference for hundreds of other people living with ROS1+ cancers. It’s a purpose that keeps me going despite the ever-present specter of potential recurrence.

Won’t you help me celebrate my 9th anniversary on my targeted therapy pill by donating to The ROS1ders?  It’s easy—just click this link and donate on my Network for Good page. It’s tax deductible. (Here’s the link again: )

I know there are many worthy charities asking for money this time of year. Any small amount you can give will help accelerate research for hundreds of ROS1ders worldwide who, like me, are dying for more treatment options.

Thank you for your support! 

Nominate a CURE #LungCancer Hero by June 30, 2021

Show your appreciation for an individual who goes above and beyond to make a difference in the lives of those affected by lung cancer. If you know a hero who has inspired change, exemplified compassion or brought newfound hope to you or someone you care for, share their story by submitting an essay nomination for the 2021 Lung Cancer Heroes® awards. This is only the second year this award has been offered.

Submit your nomination by June 30, 2021 here:

Have expensive cancer meds that you can no longer use?

Many of my friends who have lung cancer take targeted therapy pills. Mine costs $17K per month when not covered by insurance. Some drugs cost even more.

Unfortunately, most all patients who take targeted therapy pills see their cancer eventually start to grow again. These patients often must change to a different anti-cancer therapy. When a patient has to change therapies, they may be left with unused medications.

Patients on expensive medications HATE to throw out their cancer drugs when those same drugs might help someone else live longer or more comfortably.

Some US states will allow “prescription reuse” — unopened cancer drugs can be donated for use by a different patient. As the map shows, state laws on this subject vary significantly, and not all states that have enacted prescription reuse laws have operational programs that enable reuse.

Why isn’t this easier? Why can’t I just drop off my unused pills at a pharmacy and know they’ll get to someone who really needs them but can’t afford them?

If you wish to donate unneeded cancer drugs, check with a local pharmacy or prescriber for practical advice on what may work in your situation, in your state. If your state has no operating program, contact your state legislators.

What a great opportunity for patient advocacy to make a difference!

GRASP registration now open to #lungcancer patient advocates for #ASCO21 poster sessions

Hey Lung Cancer Advocates!

Are interested in discussing an ASCO poster with a lung cancer scientist?

The IASLC STARS program, KRAS Kickers, and LUNGevity have partnered with GRASP (Guiding Researchers and Advocates to Scientific Partnerships) to offer lung cancer poster reviews at ASCO 2021. GRASP is a grass-roots advocacy effort that started in the breast cancer community. 

In the GRASP format, a scientist discusses posters with a small group of patient advocates and an experienced research advocate. Virtual GRASP sessions will take place the week after the official ASCO meeting with six different sessions over the course of two days.

To take advantage of this opportunity for the 2021 ASCO Annual Meeting, please join GRASP (it’s free!) and then go to GRASP advocate registration to register one of the five lung cancer poster sessions on selected topics.  Please also consider signing up for one of the optional GRASP training sessions (May 26 and 27).

If you have any questions, please contact Julia Maues, patient advocate and cofounder of GRASP.

We look forward to seeing you at a poster session!

Image credits:  © GRASP 2021