My Scanxiety Won’t Listen to Reason

To promote the value of blogging transparency, I must make a confession.  I have a PET-CT scan on Monday to check the status of my cancer.  For the past several months, I’ve been pretty relaxed about scans.

Right now, however, I have a raging case of scanxiety.

There is no logical reason for this.  My scans for the past 11 months have been clean, and I have no symptoms that would indicate this scan should be any different.  Even if I do show a recurrence on this scan, I know I have treatment options.  Even if I didn’t have treatment options, I am not afraid of dying.

Decades ago, someone taught me my emotions can be influenced by how I choose to view a situation.  If I hear a rude remark, I choose to think “They’re having a tough day” and I don’t get angry.  If I screw up on something important, I choose to think “I’ll do better next time” and I don’t feel frustrated with myself.  This technique allows me to sidestep most negative emotions and continue moving forward instead of getting stuck. It even works with scanxiety. Usually.

So why the heck doesn’t my scanxiety respond this time?

I suppose recent events as well as past history have something to do with it.  A neighbor who was diagnosed with lung cancer after me died from metastatic tumors in her brain covering a few weeks ago.  A friend in my lung cancer support group who had been doing well on a targeted therapy developed brain tumors in early October.  A friend in my online support group, and who is in my ROS1 lung cancer clinical trial, may have progressed (I blogged about that here). The clinical trial in which my onocologist planned to enroll me if my cancer recurred just stopped accepting new participants, which means I don’t know for certain what my options are when my cancer recurs. And in December of each of the past two years, I was coping with a recurrence of my cancer.

I guess my subconscious processing of all these events trumps the thoughts I choose to think in my conscious mind.

So here I am, preparing to fly to Denver for yet another scan.  Inside, I feel like my entire body is about to explode from pent-up tension.  Outside, I’m strung so taut that I erupt at a single misstatement from a family member.  My scanxiety hasn’t been this bad since my first recurrence blossomed into a very visible tumor on my collarbone.

All I can do is eat healthy, try to get a good night’s sleep, listen to lots of Mozart while I pack, and keep to myself until Monday afternoon so I don’t bite anybody.

Alive for Thanksgiving

Today those of us in the USA celebrate Thanksgiving.  I have much for which to be thankful.

I’m thankful I beat the lung cancer odds and lived to see this day. No matter how much longer I may have, each day is a gift.

I’m thankful for my family (whether related by blood, marriage, or adoption)—husband, children, siblings, nieces and nephews, cousins, and companion animals. I’m grateful for the time I get to spend with each of you.

I’m thankful for my friends, who became family through shared interests and experiences. You bring me joy whenever we’re together.

I’m thankful for the beauty and majesty of the Pacific Northwest, and the wondrous, awesome, fascinating universe in which it fits.  I never tire of learning how it all works.

I’m thankful for the arts.  They stimulate my senses and inspire my imagination, often when I most need it.

I’m thankful to have a home and enough resources to live comfortably. I know many people locally and globally are not so lucky.

I’m thankful to live where I’m allowed to say what I think freely.

I’m thankful for the researchers, healthcare professionals, organizations and techies that made it possible for me and other patients to live another day.

I’m thankful for people who care for lung cancer patients.  If a friend or loved one has metastatic lung cancer, ask if you can help them learn about mutation testing, targeted therapies, and clinical trials. You might help buy them more time. And more time is precious.

Happy Turkey Day, everyone!

Tweets for #LCAM2013 Week 4 — How to Help 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.

Tweets for the final week of Lung Cancer Awareness Month (#LCAM2013) focus on HELP:  what you can do to help lung cancer patients, whether through providing direct assistance, funding research, advocating, or supporting lung cancer organizations.  Facts for all weeks of #LCAM2013 are collected here.

HOW TO HELP LUNG CANCER PATIENTS

November 25 tweet:
HELP: Distribute information about low-dose CT screening for #lungcancer. http://www.lung.org/lung-disease/lung-cancer/lung-cancer-screening-guidelines/lung-cancer-one-pager.pdf #LCSM #LCAM2013

November 26 tweet:
HELP: Support #lungcancer patients as a volunteer at your local cancer center. #LCSM #LCAM2013

November 27 tweet:
HELP a #lungcancer patient during/after treatment with transportation, childcare, housework, meals, or fundraising. #LCSM #LCAM2013

November 28 tweet:
HELP: Support #lungcancer charities that fund research or assist LC patients. http://lungcan.org/our-members/ #LCSM #LCAM2013

November 29 tweet:
HELP: Support an LC advocacy org or ask your government reps to fully fund #lungcancer research. http://lungcan.org/advocacy/ #LCSM #LCAM2013

November 30 tweet:
HELP: Join an #LCSM chat on Twitter to discuss #lungcancer topics. http://lcsmchat.wordpress.com/lcsm-chat/ #LCAM2013

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.