Tuesday, February 11, 2014

Cycle for Survival: Riding for Dollars!

                                                                TALK ABOUT UPLIFTING...

     Last Sunday, my family and I participated in the Cycle for Survival fund raiser for Memorial Sloan Kettering Cancer Center at the Equinox in downtown Chicago.  This fund raiser has grown into a two-day event in Chicago with sites in 18 other cities.  We were among more than 450 other riders who showed up at 8:00 AM on a Sunday with the sole purpose to ride, sweat like crazy, and raise money for cancer research.  The energy in the room was overwhelming and I was reduced to tears several times...in gratitude.  

     As most of you know, last year I was too sick to participate, so Wynn, Nathan, and Nina joined my extended family on Wynn's side to ride in this event.  This year I was healthy and strong enough to ride and together Team SHEADE raised nearly $7,300!

     I was asked to address the crowd and say a few words during the event.  Although Nina came with me to be my support, I was so nervous I forgot to mention a few things: 
  1. I'd like my family to know how fortunate I feel to be a member of a family that, not only stands behind each and every member, but one that is strong...strong enough to band together to raise and support a wounded member during challenging times.  Thank you and I love you all so much!
  2. Being able to ride on Sunday, I am living proof (literally) that great strides have been made in the understanding and treatment of cancer.  These new treatments would not be available without private donations supporting the scientists that make them possible.  There is still so much to learn.
  3. I'm a non-smoker with lung cancer...a never-smoker.  Two-thirds of us are non-smokers.
  4. A big 'THANKS' to Becca for organizing the family this year.  (It was probably a little like herding cats.)
Riders:  Becca, Devin, Jori, Jayme, Andy, Eudice, Harold, Caitlyn, Larry, Leslie, Bruce, Tracey, Nathan, Nina and me.  Enthusiastic supporters:  Bob, Jake, Livvy and Wynn. 


The women of Team SHEADE:
L > R: Caitlyn, Becca, Nina, Jori, Me, Leslie, Eudice, Tracey, Livvy, Jayme

Eudice and Bob (Bob got us started last year with Cycle for Survival) 
Our nephew, Larry, and his fiance, Leslie

Nina and me

Our nephew, Harold
Harold and his Caitlyn

Tracey and Bruce's head (Together with Jake and Livvy, they drove up from St. Louis to ride with us!)
Our niece, Jayme, and Devin, our niece, Becca's, husband

Nathan and Jayme's husband, Andy

Our team had two bikes this year so we were able to ride in pairs.

Post-ride lunch for most of us. (Bob took this picture.)

Jori took most all of these photos.  Thanks, Jori!

Tuesday, February 4, 2014

The State of the Lunion, January 2014

In keeping with President Obama's recent State of the Union Address, I was inspired to update you on my status since I my last State of the Lunion Address  6 months ago.  Also, the last time I wrote a State of the "Lunion" Address, I was hoping someone would note how clever I was...get it?  Lunion...a combination of Luna and Union?  I know, I know...funny things always lose their funniness when they are pointed out.  Sheesh...tough crowd...

The State of the Lunion, January 2014

     It's hard to believe that's it's been over a year since I was diagnosed.  Time passes fluidly when I'm not thinking about my illness.  It passes awkwardly when I think about my cancer and treatments over the past 13 months.  Events of the past year have been book marked similarly to time references such as "B.C." or "A.D.".  In my case the time references are B.H.L., (Before Hair Loss)  and A.X., (After Xalkori).  

      Since I started Xalkori, my hair has generously grown back in.  It was pretty sparse from February through July of last year and I wore a wig or a baseball cap whenever I went out.  At the suggestion of other cancer ninjas who swear by it, I took biotin, a vitamin that supports hair and nail health.  Although my hair is much grayer than I recall it to be, it is also much thicker.  I've decided to keep it short for two reasons;  it's very easy to take care of and, if in the future I need to start back on an IV chemotherapy that will cause my hair to fall out again, I'd rather it be short.  

     I'm still taking Xalkori, the oral chemotherapy which I started in March, 2013.  Thankfully, Xalkori is still keeping my cancer in check for now and the side effects have been very tolerable for me.  I understand that some patients on long term Xalkori therapy have reported hot flashes, edema and neuropathy.  Despite being really happy with the benefits I am getting from it, I do believe I am experiencing these side effects...mildly, so far.  Other known side effects (such as nausea, G.I. problems and dizziness), have gotten much better, although waves of nausea are a new normal for me.  My last CT scans were encouraging.  My lung tumor, (~3 cm in diameter at the time of diagnosis), is no longer visible, which means that, if it's there, it's less than 5 mm in size.  The multiple metastatic tumors in my liver were fewer and smaller.  My most recent bone scan showed some relatively significant mets in my left hip/pelvis, but overall, was much improved over the bone scan I had a year ago. 

     My strength has improved, A.X.  Just before I was diagnosed, I felt pretty fit and strong.  During the two months I was on an IV chemotherapy, I definitely became weaker.  However, since starting Xalkori, I've regained some strength because it's allowed me to exercise several days a week.  I recently joined a yoga class and have gotten in many X/C ski days.  I continue to work, part-time, but have prioritized spending time with family, friends, and especially my 85 year-old mother.  
     Right now the most prognostic factor for me is that I feel good.  It's relative.  I feel tons better than I did a year ago, but not as great as I remember feeling two years ago. I realize that I won't have success with Xalkori forever, but for now, it's giving me more time.  Knowing that I have bad cancer, more time...whether it passes fluidly or awkwardly, is what I want. 


     Other updates since my last State of the Lunion Address:  Nathan graduated from the University of Wisconsin-Whitewater last December.  We are so proud of, and happy for, him.  Although he loves his current job, he's looking for a better paying one.  Nina's working as a scribe in an E.R., and has been admitted to medical school for the Fall.  She is still in the process of deciding which school she will attend. (I'll keep you posted about her decision.) Wynn is well and since we've had so much snow here this year, he has been X/C skiing like a mad man.  Despite the sub-zero temperatures around here, he goes as often as he can, sometimes before work.   On days when the temperature is above 20 degrees, I'll always go with him.  It's a wonderful sport that he and I love, and we love doing together.  This year we finally convinced Nathan and Nina to join us and so far, so good.