Wednesday, June 19, 2013

The State of the Lunion Address, June 2013

(Pretend that I'm giving a speech.)

Family, friends, blog readers I haven't met yet, and fellow cancer ninjas:

Six months ago this week, I was in an emergency room learning that I have metastatic cancer.  So much has happened during this time and here's where things stand:

My Cancer Status:
For as sick as I am, I'm doing pretty well. I've been taking a newer oral chemotherapeutic agent, Xalkori, for the last four months.  Initially the side effects were really rough, but over time I've adjusted to most of them and have figured out how to work around the few remaining ones.  CT scans, six weeks ago, showed my lung tumor and the tumors in my liver are all shrinking. The mets to my bones were about the same - thankfully not worse.  Most all of my labs have returned to normal, or close to normal, including liver function tests. My energy level began to improve a few weeks after starting on Xalkori, but I still get tired easily and find myself needing to sleep a lot.  I'm at the tail end of weaning off of oxycodone, which has been a long and painful process. I feel virtuous getting off of oxycodone, but am experiencing some bone pain, mostly in my ribs, (which isn't bad, given I have mets in most of my bones.) Right now, ibuprophen controls the pain well enough.  I get monthly IV infusions of Zometa, which helps to reduce the risk of bone fractures.  My oncologist is optimistic and only wants to see me monthly.

My Family:
Wynn continues to be a constant in my life, (before and), since my diagnosis. As my overall ability to re-engage in life has improved, he encourages me to do as much as I can.  When I'm tired, and cranky, it sometimes feels like he's pushing me, but I realize that he just wants me to be well.  My love for him is unbending.   

Nathan finished the school year working as an assistant in a junior high class for autistic students.  He left home earlier this week to return to UW-Whitewater to take his last class before graduating college.  He's worked hard for this degree and is very motivated to be done.  Nina took the MCAT last month, did well, and is in the process of applying to medical schools. She's working as a medical scribe in an ER, getting great exposure to and experience in emergency medicine.  When I first discovered my cancer, I was so afraid my diagnosis would derail my children's plans.  Six months later, they are both moving forward, as they should be.  My relief is palpable.

My Work:
A couple of months before my diagnosis, I had committed to working at Loyola as a prenatal genetic counselor, 2+ days a week, along with my half-time job as a pediatric genetic counselor at St. Alexius.  Sadly, I was not able to keep my commitment at Loyola, (so sorry Kelly), but have continued to work at St. Alexis. My co-workers and the leadership at St. Alexius have been amazingly supportive.  Since Xalkori, I've been able to work half-time.  When I'm working, (and sleeping), I don't  think  about being sick, so it's great to be there.  

My Workouts:
I am now trying to exercise more regularly.  It's been difficult because I'm often exhausted.  Brigid and I are back to TRX classes on Saturday mornings and Wynn and I ride our bikes 1-2 days a week.  Daily calisthenics, yoga and stretching are a priority.

My Outlook:
Having cancer sucks.  Although I never have days that I feel "great", I have many days that are pretty darn good.  I feel good enough to work a little, exercise a little, socialize and do day-to-day chores.  I get teary eyed on a daily basis, for one reason or another.  Mostly I get sad because I realize that although things are going well now, there is no cure for me.  The uncertainty of how long Xalkori will work for me weighs heavily on my mind.  I am hopeful that it will work for a long time and even more hopeful that new medications, which are in clinical trials now, will be available to me when Xalkori stops working.  In any event, I will be on some type of treatment the rest of my life.  

I understand that some folks who have limited time to live decide to quit their jobs, travel, spend money recklessly, and rack up debt they won't have to worry about.  Others live for normalcy.  That is me.  I am grateful that I have the love and support from my family and friends to help me be as normal as possible.

Thanks everyone!



Shirley Kroot said...

Thans so much for sharing your ongoing struggles and successes. I feel very strongly that you will win this battle. Onward & forward to as normal life as possible. Love you, Shirley

Wanwan said...

Absolutely WONDERFUL speech! You do have a lot to be thankful for including supportive family and friends.

Peace and love,

Dana Shields said...

Keep rockin' it girlfriend! You ARE winning this battle!
love, dana

Anonymous said...

Dear Luna, keep fighting the battle. I am with you in this fight. It is a long road and a bumpy one but you are strong and resourceful. Your family is with you and so are all of us out here praying for you.
Keep on keepin' on.