Losing the War on Words

Some days my verbal expression abilities seem to take a vacation.  I don’t take leave of my senses, they take leave of me.  Instead of making things clearer, my words make conversations more … convoluteder.

See?

This weekend seems to be such a vacation. When I tried to explain a concept to my son for a homework assignment, I couldn’t find the words I wanted and he just got more confused.  When I tried to discuss a financial matter with my husband, he kept telling me I’m repeating my points, yet he didn’t seem to grasp what I was attempting to say.  I had a discussion with a sibling and thought we’d agreed, then learned we hadn’t understood each other at all.  When I tried to clarify things, I made them more muddled.  I ended up with a headache and a load of frustration without accomplishing anything I attempted to achieve.

I know miscommunication is a normal part of family life. This could just be One of Those Days. However, when living with cognitive side effects of cancer treatment plus the very real possibility of brain metastases, such events are difficult to brush aside.  Unpleasant realities pester my thoughts:  Is it obvious to everyone that my brain isn’t working as well as it used to?  Is this a typical family snafu, or has my reasoning eroded further?  Is this just chemobrain, or a return of my cancer?  Is this headache due to the communication problems, or a new tumor?  Having someone explain to me that I just wasn’t making sense only makes me feel worse. If I’m having this much trouble expressing myself now, what will it be like when my cancer DOES progress and meds/reduced oxygen/pain REALLY impact my ability to communicate?

Besides the frustration, the hurt feelings make for a less than perfect day.  The clouded mood takes the wind out of my creative sails.  I lose all interest in working on projects or interacting with people, and just want to watch TV or play games on the PC.

Good thing today is the 50th Anniversary of Doctor Who, a well-written science fiction series.  There’s a marathon of episodes all weekend.  I can dream of how I’d use a Tardis time machine in the war on cancer.

Tomorrow is another day.

Sunny with a Tinge of Dark

This morning, after I checked a few posts and messages in an online cancer forum, hubby Gerry and I made a Costco run.  Our conversation en route was pleasant enough, but I found myself feeling increasingly grouchy.  Today was a crispy, brilliantly sunny day in Western Washington. Why was I leaning towards dark?

When I started talking to Gerry about conversations on the cancer forum, I realized why. A friend in my ROS1 lung cancer trial who has been on Xalkori for a year longer than me and whose cancer is slower growing than mine, told me his last scan showed a possible progression.

He was calm and composed about this.  Both he and I had been told the effectiveness of Xalkori against our ROS1 cancers won’t last forever, that we’ll eventually develop resistance to the drug.  We both were given contingency plans for treatment once progression showed up.  This wasn’t an earth-shaking, end-of-life event.

But yet, it was a noteworthy event for me.  Those hypothetical discussions had just become real.

I’ve had clean scans for ten months.  I usually feel good (I’m used to overlooking both the temporary and permanent side effects of treatment). I’m exercising and gradually regaining some of the muscle mass I lost in cancer treatment.  I’m writing again.  I’m going out with friends.  I’m even planning some vacation travel for next year.  Most days, I don’t think of myself as a cancer patient.  I can sometimes even blog about my cancer without the gut-wrenching realization “I have CANCER” sneaking into my awareness.  Life is … NORMAL (for unusual definitions of “normal”).

But normal will not last. Cancer survivor reality raised its ugly head. Someone among the thirty-some members of my ROS1 clinical trial — someone I know personally — probably has progressed.  We ROS1ers are NOT invincible.  Xalkori will NOT last forever.  This time next year, I might be dealing once again with radiation, chemo, or a new trial drug. My grouchiness was similar to that caused by scanxiety: I had to face the reality that my cancer will likely come back.

Once I identified the source of my fears, the momentary darkness passed, and life went on.

We bought a nice bottle of Bailey’s Irish Cream at Costco.

Thinking ahead — step 7

It’s only taken me fifteen years, but I’m finally tackling that last piece of my estate plan: the “cheat sheet” for my family/personal representative that tells where to find assets, who to contact, what online accounts to shut down, passwords, etc (and a note about my end-of-life and memorial service preferences). No matter how long I plan to be around, it’s good to know I’m making things a bit easier for whoever may be left behind.

Tweets for #LCAM2013 Week 3 — Hope for Lung Cancer Patients

For Lung Cancer Awareness Month (#LCAM2013), the #LCSM team compiled a list of tweet-sized lung cancer facts – one tweet for each day in November. We ask all #LCSM participants and lung cancer advocates to tweet the fact of the day at noon Eastern time (9 AM Pacific) to help with trending.  You can come here to copy the tweet of the day, or  if you prefer, you can retweet the fact after @LCSMChat tweets each day at 11:55 AM Eastern Time.

Our tweets for the third week of Lung Cancer Awareness Month (#LCAM2013) focus on HOPE for lung cancer patients: early detection, advances in treatment, personalized medicine, and research results.  For Week 1 tweets, click here.  For Week 2 tweets, click here. Facts for all weeks of #LCAM2013 are collected here.


HOPE FOR LUNG CANCER PATIENTS

November 18 tweet
National Lung Screening Trial showed low-dose helical CT scans can lower mortality from #lungcancer at least 20%. #LCAM2013 #LCSM

National Cancer Institute. (n.d.). National Lung Screening Trial (NLST). Retrieved 17-Nov-2013 from http://www.cancer.gov/clinicaltrials/noteworthy-trials/nlst.


November 19 tweet

Newly-diagnosed #lungcancer patients should consider getting a second opinion about diagnosis and treatment. #LCAM2013 #LCSM

Seattle Cancer Care Alliance. (n.d.). For Newly Diagnosed:  Seeking a Second Opinion. Retrieved 17-Nov-2013 from http://www.seattlecca.org/newly-diagnosed-second-opinion.cfm.


November 20 tweet

Lobectomy performed by video assisted thoracoscopic surgery results in shorter hospital stay, quicker recovery. #LCAM2013 #LCSM

Swanson, SJ et al. (2012 Apr). Video-assisted thoracoscopic lobectomy is less costly and morbid than open lobectomy: a retrospective multiinstitutional database analysis. The Annals of Thoracic Surgery; 93(4):1027-32. http://www.ncbi.nlm.nih.gov/pubmed/22130269

Nicastri, DG et al. (2008 Mar). Thoracoscopic lobectomy: report on safety, discharge independence, pain, and chemotherapy tolerance. The Journals of Thoracic and Cardiovascular Surgery; 135(3):642-7. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/18329487.


November 21 tweet

Patients whose #lungcancer tumors had driving mutations and who received targeted therapy live longer. #LCAM2013 #LCSM

Kris, M.G. et al. (2013, Oct 29). “Treatment with Therapies Matched to Oncogenic Drivers Improves Survival in Patients with Lung Cancers: Results from The Lung Cancer Mutation Consortium (LCMC).” 15th World Conference on Lung Cancer, Sydney, Australia: Abstract PL03.  Read abstract here.


November 22 tweet

Patients with #lungcancer who participate in #cancer clinical trials live longer. #LCAM2013 #LCSM

Chow, CJ et al.  (2013 Apr). Does enrollment in cancer trials improve survival? Journal of the American College of Surgeons 216(4):774-80. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/23415510.


November 23 tweet

Immune-based therapy and clinical trials show potential for #lungcancer treatment. #LCAM2013 #LCSM

National Cancer Institute. (n.d.)  Expanding the Playing Field: Immune-Based Therapy Shows Potential for Lung, Other Cancers. Retrieved 17-Nov-2013 from http://www.cancer.gov/clinicaltrials/results/summary/2012/PD-1-immunotherapy0612.

Gillis, Bonnie. (2013 Sep 29). PD-L1 Inhibitor Delivers Rapid, Durable Responses in Advanced NSCLC. Retrieved 17-Nov-2013 from http://www.onclive.com/conference-coverage/ecco-esmo-2013/PD-L1-Inhibitor-Delivers-Rapid-Durable-Responses-in-Advanced-NSCLC


November 24 tweet

Palliative care improves survival and quality of life for advanced #lungcancer patients. #LCAM2013 #LCSM

National Cancer Institute. (n.d.). Palliative Care Improves Survival, Quality of Life in Advanced Lung Cancer. Retrieved 17-Nov-2013 from http://www.cancer.gov/clinicaltrials/results/summary/2010/early-palliative-care0910.

Cancer: The Harsh Story Of Lung Cancer vs Breast Cancer

This blog post highlights some of the reasons the stigma of lung cancer persists. Very well written, and worth the read.

CancerGeek

{I will preface this post by saying that anyone that is diagnosed with cancer has their world changed forever. The clock begins to tick, world closes in on you, and your world is changed in a way that will never be the same. I am being provocative. I am challenging.}

For those of you that I have had the privilege of meeting, and for those of you I have not met, you know and will come to find that cancer is the story of my life. It is what I have dedicated my professional career to try and make an impact. I am fortunate enough to be able to combine my passion, my talent, and my wisdom all into one single focus.

In October I made a commitment to wear a bow tie the same color of the cancer awareness for that specific month. October was easy, it was Breast…

View original post 1,269 more words

Tweets for #LCAM2013 Week 2 — Personal Stories

This was posted today on the #LCSM website. Throughout November, please tweet a lung cancer fact at noon Eastern Time for Lung Cancer Awareness Month (#LCAM2013) and help us trend!

#LCSM

For Lung Cancer Awareness Month (#LCAM2013), the #LCSM team compiled a list of tweet-sized lung cancer facts – one tweet for each day in November. We ask all #LCSM participants and lung cancer advocates to tweet the fact of the day at noon Eastern time (9 AM Pacific) to help with trending.  You can come here to copy the tweet of the day, or  if you prefer, you can retweet the fact after @LCSMChat tweets each day at 11:55 AM Eastern Time.

Our tweets for the second week of Lung Cancer Awareness Month (#LCAM2013) focus on the personal stories of those who have lung cancer.  For Week 1 tweets, click here.  Facts for all weeks of #LCAM2013 are collected here.

PERSONAL STORIES OF LUNG CANCER

November 11 Tweet
Faces of #Lungcancer: NFL player Chris Draft remembers wife and LC patient Lakeashahttp://www.catchitintime.org/story/chris-draft#LCAM2013 #LCSM

November 12 Tweet
Faces of #Lungcancer: Emily Bennett…

View original post 92 more words

Why I’m in a Clinical Trial

The fact that I’m alive is a modern-day medical miracle. And I owe it to clinical trials.

In early 2011, I was in good physical shape, slightly overweight, eating healthy and exercising regularly. After I tolerated a nagging, slight cough for a few months without any relief from antibiotics, my doctor ordered a chest x-ray. Before I’d left the lab, she ordered a CT scan. Before I arrived home from the clinic, she called: the radiologist saw a mass in my lung. Two days later, a Friday, I saw a pulmonologist who performed a biopsy. He called me Tuesday evening, May 10, 2011, with the news: at age 55, as a never smoker, I had lung cancer.

Scans and tests over two weeks rendered a diagnosis of stage IIIA non-small-cell adenocarcinoma complicated by obstructive pneumonia. I was not a candidate for surgery, but the oncologist considered me curable. My tumor didn’t have either the EGFR or ALK mutations.  After ten days in the hospital and weeks of IV antibiotics, I recovered enough to get radiation therapy and low-dose chemotherapy, followed by one full dose of chemo (my side effects were too severe to allow me to have more chemo). I finished first-line treatment in early August 2011.

My post-treatment CT scan in late September 2011 showed the lymph nodes were almost completely clean, and the tumor had shrunk by over 90%. I thought I had a great chance at a cure. In the next two weeks, I underwent several tests to determine if I was healthy enough to have the lung removed. One of the tests was a PET scan, which found a hot spot on my right front collarbone. A few days, later two lymph nodes were removed in an open biopsy and found to be more of the same cancer. I was now stage IV–metastatic lung cancer. No lung surgery for me. The radiation oncologist advised waiting rather than radiating because I’d had a large volume of lung zapped already.  My oncologist also advised waiting a few months before starting a new chemo to give my body time to recover.

I decided to learn more about treatment options during those few months. From my participation in the Inspire.com Lung Cancer Support Community, I’d learned about the Lung Cancer Mutation Consortium Protocol clinical trial, which tested for ten mutations in lung cancer tumors. I had lots of slides courtesy of my two new tumors; testing for more mutations sounded hopeful, and I liked the idea of contributing in some small way to the science looking for a lung cancer cure. I searched for the trial on clinicaltrials.gov and emailed its contact person at the University of Colorado in Denver. I couldn’t travel to Denver (my pulmonologist thought my hollow tumor might cause a collapsed lung if I flew), but UC accepted me into the trial and tested my tissue anyway.  A few weeks later I received a call from the head of the trial, Dr. Paul Bunn: I had none of the ten mutations.

In two months, a visible 3-inch tumor grew by my right collarbone in the area where the lymph nodes had been removed. I had a CT scan the day after Christmas, met with my oncologist to discuss treatment, and had a power port installed. After six rounds of chemo over five months, CT and brain MRI scans showed all my original tumors were gone, no new tumors had appeared, and the collarbone tumor had shrunk over 90%. We decided to go for a possible cure with more radiation.  Six weeks later, my Sep 2012 PET-CT scan showed the original tumors were gone and the collarbone tumor was dead. However, I had two new nodules suspicious for cancer, this time in my right lung. Twice now I’d recurred within two months after finishing treatment. What to do next?

Someone on the Inspire.com forum suggested that because I was a young, healthy, never smoker with adenocarcinoma, I fit the profile of patients who had new mutation called ROS1. The poster was in a ROS1 clinical trial in Boston, but the trial was also at University of Colorado. I asked my oncologist about ROS1 testing, but he hadn’t heard of it (the research had been published just nine months earlier). While visiting family in Denver, I arranged to meet with Dr. Bunn and learned UC now tested for new mutations, including ROS1 and RET, and that my tumor had a 10-20% chance of having one of them.  I agreed to let UC test my remaining slides.

I had a biopsy a week later. The pulmonologist said he got a good sampling of the larger nodule but couldn’t find any cancer cells. We decided to wait a month and do another CT scan to see if either nodule grew. The very next day, an email from Dr. Bunn told me I tested positive for ROS1. UC had an opening in a clinical trial that involved a pill called Xalkori, which targeted cells having the ROS1 mutation.  Since I didn’t have a biopsy confirming cancer, Dr. Bunn offered to hold a trial slot for me pending results of my next scan.

My October 2012 chest CT showed the smaller nodule grew nearly 50% in one month. I called UC the next morning and started the process to apply for the ROS1 clinical trial. They agreed to consider me without a biopsy. I scrambled to collect all my medical files and scan CDs. Five days later I flew to Denver for two weeks, hoping I’d pass the screening and be accepted into the trial. I took my first Xalkori pill November 5, 2012.

For the next sixty days, I flew to Denver every two weeks, departing Seattle on Monday and returning home Wednesday. I had blood and urine tests every visit, along with other tests (like EKGs and eye exams), and a clinic visit at whichI met with the doctor to review test results and discuss symptoms. I then flew home with two weeks worth of pills. The first PET-CT scan on New Years Eve showed my two lung nodules were gone and no new hot spots—my first clean scan in 20 months of lung cancer. The side effects I experienced were far easier than either chemo had been. I had my life back.

After the first scan, my visits to UC shifted to every four weeks; after ten drug cycles, they shifted to every eight weeks. Now at UC visits I have blood work, a PET-CT scan, a visit with my UC oncologist Dr. Ross Camidge, and a brain MRI every six months. I have blood work done at my home clinic in off months.

I am not cured–the Xalkori only suppresses my cancer. However, Dr. Camidge has a plan for treating my recurrences.  It’s an odd existence, living from scan to scan. I’ll be in treatment for the rest of my days. Yet I’m hopeful that if/when each clinical trial stops working, a better one will be waiting for me.  Maybe they’ll find a cure for me before I die.

And in the meantime, I’m living.