Tuesday, February 24, 2015

Cycle for Survival, 2015

     My last blog was entitled, "My Annual Donation Request."  To date, that blog posting has received the fewest number of hits since I began blogging in December of 2012.  It's no surprise.  The title gave me away, letting readers know that I was asking for money.  I understand.  I'm not sure I would read some sob story which knowingly would end with a link for me to make a donation.  Regardless, I shamelessly let everyone know that my family and I were, again, participating in the Cycle for Survival fund raiser this past Saturday.

     Look at this room jammed with 100 spin cycles!  Each cycle had a rider on it for four hours straight.  The music was loud and the instructors, (on the elevated cycles to the left,) were energizing.

     Scanning the room as I rode, I was brought to tears.  Most riders were there because a loved one died of cancer or is currently battling the disease.  Others, like me, were there because they, themselves, are cancer survivors. There were hundreds of participants riding for research dollars. 

     Being the third year we've participated in this event, there was some sign-up and donation solicitation "fatigue."  It's hard to keep going back to friends and family to ask for more money...again.  But in the end, we pulled our stuff together, showed up, and Team SHEADE raised over $4,800. I raised nearly  $2,900.  Despite the anemic pre-event phase, we ended strong!

     This year, my dear friend, Brigid, rode with Team SHEADE.  Brigid has been with me every step along my cancer journey.  When the flu knocked out three riders for this year's event, Brigid got up early on a Saturday morning and drove to Chicago to help us. 
(Hey Stef...I have our necklace on.)


     In 2013, when I was too sick to ride, Wynn, Nathan and Nina rode for me.  This year, Wynn and I rode together.

     Leslie and Caitlin - riding for the 3rd year!   (Leslie married our nephew, Larry, last year and Caitlin is engaged to Larry's twin, Harold.)

     Two years ago, my brother-in-law, Bob, got us involved with Cycle for Survival.  Here he is with Wynn's sister, Eudice. Both are 3-time C4S veterans.


     Andy is our niece, Jayme's,  husband.  He, too, has ridden in three events.  Although an avid supporter this year, Jayme didn't ride because her baby is due any time now.


     Bob with Larry.  Larry, too, has ridden all three times.


      Friends, Cookie and Brent, with Bob and Eudice.

Signed up to ride but missing from this picture are Becca, Devin and my friend, Kisha.  Becca and Kisha were home nursing bad cold/flu symptoms and Devin was home taking care of little kids.  We know they, along with Nathan, Nina, Bruce, Tracey, Livy, Jake, Harold, and Jori - all previous Team SHEADE riders - were with us in spirit.

     To those who are currently battling cancer:  It was overwhelming to see such large numbers of people sweating like crazy to raise money for cancer research...for us.  I take it very personally.  I speak for all cancer survivors when I say, "Thank you to all participants and donors for helping to give us a fighting chance to live a little longer and a little healthier, despite our disease."

P.S.:  I ran into Becca  - who feels so badly she wasn't able to ride this year.  Here's her quote, "I'm riding next year, for sure.  I don't care if I'm the only one on that bike, I'm riding."  Hey Becca, I'll ride, too!

Sunday, February 15, 2015

My Annual Donation Request

On Saturday, February 21st, my family and I will again be participating in Cycle for Survival, a fund raising event for research at Memorial Sloan Kettering Cancer Center. This fund raiser was started by a woman, Jennifer Linn, and her husband, David.  Jennifer was diagnosed with a rare type of sarcoma in 2004 and died in 2011.  She was an avid spin cycler and together with David they created an incredible fund raiser to support research for rare cancers at MSKCC.  

My family and I came to learn about this fund raiser because David is a relative of my sister-in-law, Debbie, and my brother-in-law, Bob, is a close friend of David's uncle.  (It's a family thing...)  In any case, Bob rallied our family to participate in this fund raiser shortly after I was found to have metastatic lung cancer.  

This event raises money for research into rare cancers.  Lung cancer is the most common cancer.  However, cancer researchers and scientists now share information, working collaboratively to find new treatments.  MSKCC, famously known for their cancer research and care, has contributed to data and information that has benefited all of us with all types of cancer.  This, along with with the family connection I mentioned above, is why I ride to raise funds for MSKCC.

Of course I worry that the people close to me are experiencing "donation request fatigue" because I've been asking for your support for the last two years. In the past, my family and friends have been incredibly generous. So generous that it's hard for me to come back each year to ask for more.  Please understand that I am only able to ask again because I still need more research for treatment options...and I'm still hoping for a cure. I also ask because, as a never-smoker, I know that lung cancer can happen to anyone. It happened to me and it can happen to you. If possible, please consider making a donation. It's a great cause for those of us who are counting on more research to keep us alive a little longer. 

Just click on the link below:

If you can't donate, please know that I understand.  It's not possible to contribute to every donation request that is received.  But...I will make you a deal.  If you donate to my cause, I'll donate to yours.  Just ask me :)

And...thank you.

Sunday, February 1, 2015

Proposed FDA Regulations of 'Lab Developed Tests': A Potential Problem

I need your help.

There are newly proposed FDA regulations requiring approval for "lab developed tests", (LDTs).   Although these regulations will apply to all LDTs,  I'm particularly concerned because these regulations could have significant consequences for cancer patients.  Approval of LDTs can take years. I fear that those of us with advanced cancer will die waiting for the approval of tests that have already been validated; proven to be accurate, sensitive and specific. These regulations will put the brakes on breakthrough testing which leads to new treatments and potential cures.  I am alive only because of new science and the testing and treatments that have followed.  These regulations would be a huge step BACKWARDS. 

I know, one day, my medication will stop working and I will need testing 
to guide my doctors in a new treatment direction.  I will need this testing  quickly and, potentially, would not be able to get it if the test is new and not yet approved by this FDA regulatory body. 

Please read the information provided in the link below.  Please sign the petition.  


If you have it in you, let your Congressional Representative and your Senators know that these proposed regulatory measures should not be passed. (You can email them.)

Find your Sentors: http://www.senate.gov/general/contact_information/senators_cfm.cfm 

Find your Representative:  http://www.house.gov/representatives/find/

You can even email President Obama/the White House:   http://www.whitehouse.gov/contact/submit-questions-and-comments

Any help is greatly appreciated by me, everyone with cancer, and those that love us.  

Wednesday, January 21, 2015

The Fire Drill

The Preamble:
     For the past 22 months, I've been taking Xalkori, an oral targeted chemotherapy, to treat stage 4 adenocarcinoma of the lung caused by a ROS1 mutation.  Since being on Xalkori, cancerous tumors in my lung, liver and bones have not only regressed but have stayed, miraculously, stable.  I know this because every month I have blood drawn for tests which measure tumor markers, (CEA and CA19-9,) and every three-four months I have CT scans.  In the past, I've also blogged a lot about the uncertainty of how long Xalkori will work for me and how incredibly nerve-racking it is to not know when it will stop keeping my cancer at bay.  

      Last September Wynn and I flew to Boston for a patient forum to learn about the next steps in lung cancer treatments for folks with ROS1 mutation driven disease.  The information we learned was supposed to be the foundation to build the framework for a plan - what I need to do the day I learn that Xalkori is no longer working.  Since I returned from Boston, things have continued to go well for me.  So well, that thoughts of formulating a concrete plan started to drift from my consciousness.  

The Fire: 

     The results from my January tumor marker testing returned last week.  The CEA value was normal at 2.5 ng/mL, but my CA19-9 was 2409 U/mL, (normal is anything below 35 U/mL.)  In the months of September through December, my CA19-9 values were 10-15 U/mL, so 2409 was an alarming rise.  My oncologist called me at home, in the evening, to let me know.  His first suggestion was to repeat it, as soon as possible, because he was concerned about a lab error.  He told me that this elevated value wasn't consistent with the normal CEA result nor my reassuring CT scans, done just 8 weeks before.  

     Hearing that my CA19-9 was 2409 left me speechless.  My heart fell to my stomach.  I found it difficult to tell Wynn that there was a possibility that my cancer had started to return.  Despite knowing that this day would one day come, we were so sad.  I said to Wynn, "I'm afraid."  He said to me, "What can I do to help?"  (I love my husband.)  I didn't sleep well that night thinking about how I'd meant to have figured out a plan, but had procrastinated.  I started my "To Do" list somewhere between 2:00 and 4:00 AM.  

     The next day, after stopping at the lab, I went to work. It's good to work at the hospital where I get my care.  At lunch time I walked to the Interventional Radiology office.  Knowing that if my cancer was growing again, I'd need another biopsy, I stopped in to ask how big a tumor needed to be for an accurate biopsy.  The interventional radiologist pulled up my most recent scans and said that 8 weeks ago there would be nothing he could "hit" to biopsy because the tumors were too small.  He recommended repeat CT scanning if my second CA19-9 confirmed the 2400 value so there could be clinical correlation between the blood tumor markers and the size of my tumors on imaging.  In general, I learned, a biopsy would have to wait until a tumor had grown to at least 1 centimeter in size.

    I reviewed my notes from the Boston patient forum.  I had written in the margin, "Make consult appointment with ROS1 expert."  A couple days ago, I contacted one of them, and have started making plans to travel to Colorado to see him in the next few months.  

     From the time I learned that my CA19-9 was 2409 until I learned the results of my second blood test was nearly 2 days. (It felt like 2 years.)  It turned out that there was a lab error.  My doctor had my second blood sample sent to two labs for retesting.  One to the original lab and the other to another reference lab.  Both returned within normal limits, 25 U/mL and 18 U/mL. 

The Drill:

     I now realize that doing well on Xalkori had lulled me to a place of inertia.  I had some vague plan about making a plan, but not until I thought I was in trouble did I actually start talking to key people and asking necessary questions.  So, even though it was stressful having to wait 48 hours worrying whether or not my cancer was active again, it lit a fire under me...it was the heat I needed to feel to remind myself that I had work to do.  I now have some idea how I'll feel when I'm told that my cancer is really growing again and I am on track to gather important information I'll need to take the next steps, without wasting time.   This last round was a practice run...a fire drill, of sorts.  



Friday, January 16, 2015

Catching Up

     Last month was a busy one.  From the beginning of December through yesterday, we hosted five gatherings in our home.  Wynn and I love welcoming our family and friends - sharing food, drinks, games and laughs.  All were wonderful get-togethers which I hope we can continue to have for many years to come.  Lately Nathan and Nina have taken very active roles in helping us prepare for our parties.  Everyone likes to cook so there's no shortage of sous chefs in this house.

     An unfortunate part of being so busy is that I'm not able to get to everything I'd like to.  This year our New Year's greeting cards were sent out nearly two weeks into the January and I haven't been able to blog for several weeks. So, I'd like to take this opportunity to wish everyone a HAPPY and HEALTHY 2015!  

      In general, I feel fine.  Most of my days are good, with not-so-good ones interspersed among those.  However, for the past month, or so, I've been more fatigued and experiencing more joint achiness.  I attribute my general malaise to a busy December and the frigidly cold weather we've been having the last several weeks. 

Ann, Mike, me, Wynn
     For the first time in my life, I'm bothered by the winter weather in Chicago.  Having a chronic illness, coupled with being in the latter part of my 50's, makes four inches of snow with single digit temperatures and sub-zero wind chill indices seem crazy.  I think if I had one less burden, say...I didn't have cancer or the wind chill factor wasn't in the negative Fahrenheit range, I wouldn't be complaining.

Me, Margaret, Neil, Ann, Nina, Mike, Wynn
     Winter, however, brings snow and we've been able to go cross-country skiing a few times this year. Achiness aside, if the conditions are right, I'm going out! A good day of skiing makes it possible to forget about burdens. 

     I've never been a speed demon in anything I do, but now I'm even slower than I was before.  (Hardly seems possible.) "Thanks!" to my skiing family and friends for patiently waiting for me to catch up. 

Yup...that's me way behind my skiing party.  

Sunday, December 7, 2014

Another Birthday Gives New Meaning to...

....the words "terminal cancer."

     Today I'm celebrating my 56th birthday.  I normally wouldn't announce my age to the world, but given that the chance I'd make it to this day was slim, I would like everyone to know that I MADE IT!

     The best part about reaching this birthday is that I didn't "limp over the line."  I was diagnosed with stage 4 cancer about a week after turning 54, and although the first few months of that year were beyond challenging, I've been fortunate to have enjoyed a, relatively, wonderful quality of life, despite having a terminal illness.  

      A great quality of life doesn't happen in a vacuum or by accident.  It is only with the love and support of my husband, my children, my mom, and MANY wonderful family members and friends that I am living my life as close to normal as possible.  All of you, including Wynn, have no idea how much strength you've channeled to me by being active participants in my complicated life.  

     Last year, I asked you all to celebrate with me:

     For this birthday, I am raising my glass to you with an ENORMOUS and heart-felt THANK YOU! 


(Oh....and F*&K terminal cancer.  I'm still here.)

Wednesday, November 19, 2014

CT Scans #8, Update

     I love living.  It's fun...mostly.  Having stage 4 lung cancer isn't fun, however.  It's a hassle and annoying. Everyday I have to remember to do certain things to increase my chances for living longer.  Entered into my iPhone are five daily alarms for medications and vitamins.  I space them out because some medications I need to take at a specific time with food, while others I need to take two hours before or 2 hours after taking other medications. I have an alarm for a medication I take once a week.  I have scheduled appointments with my oncologist and get an IV infusion of a bone strengthener once a month...and...every four months, I get CT scans of my chest, abdomen and pelvis to see if any tumors have started to grow back.  

     Most of my fellow stage 4 lung cancer ninja friends get scanned every three months.  It's standard.  In the beginning, I did too.  However, CT scans expose us to a lot of radiation and earlier this year I started wondering if maybe I should try to reduce my exposure.  I spoke to my oncologist and negotiated getting scanned every four months.  (I tried to get him to agree to every six months, but failed.)  So, the last two rounds of CT scans I've had have been spaced out by four months. 

     You would think I'd be happy because I got what I wanted.  (Well, herein lies the rub and why having cancer is so annoying...)  Knowing that Xalkori won't work forever, I'm constantly wondering if NOW is the time that it has stopped.  And...if it has stopped working, shouldn't I know that as soon as possible.  I engage in grueling mental gymnastics trying to figure out if it's better to reduce my radiation exposure or know, sooner, that my cancer is growing again.  

     For now, I've been holding out, reducing my radiation exposure 25% by getting scanned every four months.  I've realized, however, that the longer I'm on Xalkori, the more anxious I become that it has stopped working. I worry that my luck has run out. In my lung cancer community there are those that have been on Xalkori for many years, but there are also those who only got benefits from Xalkori for a couple of months.  I just picked up my 21st month prescription.  The uncertainty of how long Xalkori will work for me puts a damper on my enthusiasm that it is working for me now.   This uncertainty is an unwelcomed burden.  However...

     ...yesterday I had follow-up CT scans.  My oncologist called today to tell me that everything continues to appear stable, meaning that  Xalkori is still keeping my cancer in check.  Yahoo!

     This past summer I was driving east 
on Dempster Street somewhere in Skokie, (IL).  Stopped in slow traffic, I looked to my right and saw this tree smiling at me.  I was in a rush to meet some people for lunch so I couldn't stop to take a picture of it.  I made a point of driving home the same way and, luckily, was able to find it.  This smiling tree makes me smile and is among the many simple reasons why I think living is fun.  

Please join me in a smile...my scan report is GOOD!