Then...and Now

Memorial Day Weekend, 28-years ago, Wynn and I married each other:  

For richer, for poorer, in sickness and in health.  

Then...

Dancing to "Shout," from the movie Animal House. Remember that?!

...and now.

Meet Stefanie...

...my pal.  We met each other the first day of graduate school at UC Berkeley, over 30 years ago.  We stay together whenever we go to genetics conferences and I get to see her when she comes to Chicago for work meetings.  I got to see her last week.  She is among my dearest friends and I wanted you to know her.  She's a real gem :)

Decreasing Urgency

     Soon I will mark 18-months since I was diagnosed with stage 4 lung cancer.  Oddly, it feels like it was just yesterday at the same time it feels like it's been years.  Time is often a topic of my thoughts...how it ebbs and flows depending upon how things are going. 

     When I was diagnosed and for the first six months, or so, I was not optimistic that I would live beyond the (now outdated) statistic of 6-12 months for folks with stage 4 adenocarcinoma of the lung.  I don't know if it's common for others with a terminal illness to feel the way I did, but I suspect there is often a sense of urgency to do things before life ends. Most of the items on my bucket list are not necessarily 'tasks' but rather organizational processes, (which speaks to my personality.)

     Here are a few items, (rational and irrational), that were on my short list of things to deal with before my time was up: 

      1)  I wanted to make sure my two (young adult) children were on the right track to being healthy, (mind, body, and spirit), adults.  I had a great need to tell them to always be kind, responsible, reliable and dependable, and to save money on their way to becoming prosperous.  I felt that if I could see them headed in the right direction in their 20's, they would have the life skills to love, be loved, and find a circle of family, friends and partners that would support them in my absence. I wanted both of them to be neat, eat only healthy foods, exercise regularly, have impeccable table manners, be on time, polite, diplomatic and fair at all times.  

     2)  I wanted to get my house in order.  I felt it was necessary to paint the interior, have the patio leveled, pick out new outdoor furniture, get new carpeting, replace old blinds, get new bed linens and empty the basement of all unused stuff.  

     3)  I needed to create as many good memories for Wynn as I could.  I wanted him to be able to easily remember our shared experiences unrelated to my illness.  Hence, we went to Italy, we bike and ski together whenever possible, and I try to be "present" whenever I'm with him.  I also wanted to keep the disagreements to a minimum. 

     Here's what I've learned about each of the above items now that I'm outliving my own initial expectations:

     1) Although I will always be a mother to my children, no matter what age they are, to try to condense everything I wanted to teach them into less than a year was extremely stressful for everyone.  I found myself being impatient and inflexible.  I realized that if I kept that up, I'd end up driving them away...at a time when I needed them the most.  

     2) Getting my house in order requires a lot of time, effort and money.  As always, I can only do what we can budget for and I must balance my cleaning frenzies with days of rest, so that I don't run out of energy. Also, emptying out the basement of all unused stuff is...not possible.  

     3) I still want to create as many good memories for Wynn as possible.  

     Among the many nice things I've realized about living longer than expected is that I don't have the crazy overwhelming sense of urgency like I had a year ago.  I know that I have more time with my children so that teaching them about being good human beings can come about by setting an example, through long serial conversations, and by walking at their sides, as we all pass through life. Oh...and poor Wynn...since there is no longer that sense of urgency, I no longer have to keep the disagreements to a minimum.

Hey...Check This Out!

     A few months ago, I noticed that a fellow lung cancer blogger, Tori Tomalia, had a logo on her blog site:  Best Lung Cancer Blog - 2013.  I wondered how one is recognized for this distinction.  This morning I learned that my blog was included in the 2014 group.  I still don't know exactly how this happens, but check out page 12 on the link below:

Best Lung Cancer Blogs of 2014

The stories that emerge from the lung cancer community can be inspiring, heartbreaking, hopeful, and thought provoking. Some of these blogs convey the raw emotions and day-to-day realities faced by patients enduring treatment. Others focus on encouraging news from researchers. A few blogs are simply calls to action from activists.
Whatever their purpose, these brave and talented reflect the shared experiences of everyone touched by lung cancer. These bloggers’ perspectives on life give everyone reason to appreciate today and be hopeful for what tomorrow may bring.


http://www.healthline.com/health-slideshow/best-lung-cancer-blogs#12

     I follow most of the other named bloggers and have learned so much from them.  For other lung cancer ninjas, I encourage you to follow them, too. We have all had different experiences and it's enriching to follow their journeys.  

Understanding the Plan

     One of the more difficult aspects about being a stage 4 lung cancer patient that is "doing well," is knowing that my medicine won't work forever.  The average Xalkori patient sees benefits for about 8 months and I've already surpassed that by nearly two times.  I hope to be an "outlier" who will benefit from Xalkori for years, but in the meantime, the thought that my medicine can stop working at anytime weighs heavily on my mind.  

     Last week I attended a lecture at The Wellness Place near my home.  The speaker, Melissa Johnson, MD, is a thoracic oncologist from Northwestern University Medical Center.  She was an excellent lecturer and her talk turned out to be a great launching point for me to gather more information so I can figure out a plan for when Xalkori stops working.  Several ill-defined questions I've been perseverating over, started to take shape. 


     Earlier accounts of the oral chemotherapies commonly used to treat lung cancer indicated that when they stop working, the cancer "rages back."  The word "rages" makes me feel like the cancer will come back so quickly that I won't have a chance to figure out a strategy to re-group and fight back.  It frightens me.  After hearing Dr. Johnson speak I decided I needed to come up with a plan and started reading more, asking questions, meeting with doctors, and contacting clinical researchers.  Here's what I've learned:

     Over the past couple of years, or so, clinical researchers have learned so much from their patients.  They now transition patients from one medication to another much differently. It appears that when a targeted oral chemotherapy stops working, it doesn't stop working in all the cancer cells...just some of them.  So, although the medication doesn't control all the cancer cells any more, it still controls some or most of them...at least for a while.  Patients with recurrent lung cancer growth are kept on their medications, which slows the cancer growth down while the next best treatment option is decided upon. 

     Anti-cancer medications stop working because the DNA in the tumors mutate and become resistant to the chemo.  To know which treatment option is the best after a targeted oral chemotherapy stops working requires a tumor biopsy and re-testing for tumor mutations.  Then one hopes that the new tumor mutation has a treatment option available.  Here's where it gets tricky for some of us...

     Right now the most accessible tumors for biopsy are the metastatic tumors in my liver.  Xalkori has been working so well, that all the tumors have shrunk.  If, down the road, tumor markers in my blood and CT scans indicate that my cancer is actively growing again, ideally I'd like to have a biopsy and tumor genetics done so my next medication can be started, immediately.  Not so fast...  

      Tumor genetic testing requires an ample sized tumor sample to identify, and then confirm, any new mutations.  My tumors are all very small right now and some are not visible on CT scan.  I learned that once blood testing and imaging tell me that the cancer is growing again, I will, in all likelihood, have to wait for the tumors in my liver to grow big enough so that an adequate biopsy can be obtained for accurate testing to be possible.  I may need to wait for months.

     I asked the lecturer and my oncologist how patients feel while waiting for the tumors to grow large enough to test.  I am told that we usually feel OK, physically.  However, I understand that emotionally and psychologically, it's tough, as you can imagine.  My oncologist reminded me that cancer growth is a process that occurs over time, and although we will never know how long I had cancer before it was discovered, it was probably a while.  He, kindly, reassured me that nothing bad will happen suddenly.  I needed to hear that and remind myself to: