Craig and I just spent a week in Beaverton, OR packing up our apartment. Our domicile is right now heading toward the mountains and over the plains toward Minnesota. In August a new chapter opens, we become Minnesota residents...Minnesotans & Minneapolitans.

Treatment decisions have been difficult and rapid.  We flew to Minneapolis for treatment only 5 days after diagnosis. After 5 very stressful months of treatment and living chaos, we are finally feeling settled in a nice home with a life that is calmer and more "normal". Having only one home base is the final stabilizing choice, until we know better what my prognosis will be.

I am beginning to feel very hopeful. Tarceva treatment, at the reduced dosage (100mg) is very tolerable. I HAVE HAD 5 VERY GOOD DAYS that feel energized and mentally acute, like how life used to feel!  I've even started planning projects at home. This is the quality of life I am seeking!  We are early in the process but if I can maintain current quality of life on Tarceva, I will have a good run. I joined an online forum called "Inspire" where there are lots of people with the same diagnosis and treatment options, many of whom take Tarceva. There are people on the forum who have been on Tarceva for 2, 3, 5, even 8 years. I am feeling almost like I know I have years ahead of me ... wow, what a different feeling.

To my Oregon Friends - yes I was in Oregon last week for 5 days. I apologize for not telling anyone. The work was very intense and I was sick for the first 3 days. There just wasn't any time, this time. Next time. Ok?

These days I use pot and pills to manage my life. Sounds like a disaster, but I have actually reached a livable balance point. The oral chemo, Tarceva, is working "too" well. My side effects (rash, diarrhea, hair loss, fatigue) have been severe and surprisingly that is a good thing. Research shows patients with severe side effects have the best response to the drug. I am choosing to reduce my dosage a bit, in hopes of preserving my hair and healing the rash on my face. I have joined an on-line forum called "Inspire" which allows me to discuss my condition and treatment issues with others. Several patients on the forum have reduced their Tarceva dose, due to side effects, and still have had an excellent response to treatment. There were 3 research articles on reducing dose that someone posted for me, all indicating that patients who reduced dose due to severe side effects had the best outcomes (likely correlated with the severity of side effects not the reduction in dose). Some patients report being on Tarceva for 2, 3, 4 years...imagine gaining that much time!

Tarceva research on reduced dose, another article,  and another

Oncology Woes - It concerns me that my oncologist did not  know that hair loss is a side effect of the Tarceva (widely reported on the forum). Instead, she suggested I see an endocrinologist to explore potential autoimmune issues. Lots of appointments, tests and needle sticks for nothing, thank goodness I researched it myself. I will shift to Mayo once my cancer begins to progress because I feel they are more skilled and have a more comprehensive approach to treatment.


As for pot, I have 80 grams of cannabis oil obtained from a legal Oregon Medical Marijuana dispensary. Only cancer patients can buy cannabis oil, and trust me, no one else would want it because it tastes awful and makes you dizzy. Cannabis oil is made by using solvents and low heat to draw all of the THC out of a rather large amount of female plant bud. It ends up as a blackish green tar that is incredibly potent and difficult to dispense...so we use an Oreo cookie. I take about .25 gram of the oil in a cookie each night. The picture below is my jar of cannabis oil (tar). The cannabis oil has helped with sleep, pain, nausea and appetite. Some patients report that cannabis CURES their cancer at the dosage of 1gm per day. I currently sleep all day if I take more than .2 grams. I'm not certain I can improve my tolerance to 1 gram without sleeping for a month, still it is nice to know the cannabis is available to help manage pain and improve sleep.

Research on Cannabis for Lung Cancer

Test results show a 50% reduction in my cancer tumors, with no new metastatic spread. My response to the drug Tarceva is viewed as "normal" by my oncologist. Recommendation is to continue with the Tarceva and hope for further reduction in tumor size. Dr. Fujioka seemed confident that "progression free" survival would be 9-11 months.
Yay!!
I am looking forward to another beautiful Minnesota Spring!

Overall my energy has been very good, especially for the past 4 days. Craig has helped me with cannabis oil dosage, to ensure that I sleep but not all day. This is working well. 

I continue to struggle with Tarceva side effects (skin rash/acne, diarrhea, fatigue). The rash on my face is unbearable. I am also losing my hair (unexpected, unknown cause). Vanity is screaming!!! You would think, when coping with a serious illness, that I would no longer care  about "the small stuff" like appearance. Wrong. l feel even more vulnerable and "abnormal". I feel like hiding in the bedroom all day; I have to force myself into social settings.  I am working with my oncologist to reduce the severity of the rash either using antibiotics or by using a reduced dose of the medicine. This is a piece of "Quality of Life" that turns out to be very important for me.