Tuesday, March 24, 2015

Beating Cancer

"When you die, it does not mean that you lose to cancer.  You beat cancer by how you live, why you live, and the manner in which you live."

This is what Stuart Scott said when he accepted the Jimmy V Award for Perseverance... and I could not agree with him more.

Chad ad I watched Stuart Scott on ESPN's SportsCenter post-marriage and pre-children.  You could tell he was someone who loved his job, and he was also someone who said what he thought, and that was so refreshing.  I think we have approached cancer similarly, in that it is just something you have to do.  Get on with treatment, get it behind you, and make the most of the time you have when you are healthy.

We were out to lunch as a family on the Sunday after Stuart Scott died, and tributes to him were all that was on the TVs in the restaurant we were at.  We don't watch much TV (so much so that we cancelled cable a few months ago), so it was lucky we were at a place with TVs that day.  I kept waiting for my children to ask about why he died in his third battle with cancer, and would this happen to me as well - but they didn't.  I hope it is because they think of me as healthy and cancer free.

Stuart Scott's words above have stuck with me.  Hearing him say them was very powerful.  No one wants to be defined by cancer.  I agree that you beat it by living your life to its fullest despite cancer.  You don't put off what you want to do.  You seize the opportunity and do it.  You make sure the people you love know that you love them.  You do what makes you happy.  You fight for what you believe in.

For me, part of how I live with cancer is advocating for cures and working to raise awareness so that my children, or their children, will not have to go through what I have been through.  I am still not up to marathon shape...  and honestly the cold has made me want to sleep more than exercise this winter.  My sister, Robin, though has been out there again on my behalf.  Robin is running in the Boston Marathon with Team in Training.  She has been training in the snow and cold in Boston to help raise money for the Leukemia & Lymphoma Society (LLS).

LLS has funded research for decades.  They are a big reason that the 5 year survival rate of the most common childhood leukemia - Acute Lymphoblastic Leukemia (ALL), which is what 75% of children with leukemia get - has gone from less than 10% in the 1960's to over 90% today.  So in about my lifetime, a diagnosis that used to be a death sentence is now something that nine times out of ten is completely curable.  They have done this from using research to figure out how much chemo is needed and for how long.  For the first time in several decades several new medicines have been approved by the FDA to treat leukemia and lymphoma.  However, although the drugs have been approved, studies are needed to figure out how to administer them, how much they need to give, and over what period of time.

If you are diagnosed with any kind of cancer, consider taking part in a trial.  Right now 50-70% of children with cancer are in a trial but only 2-3% of adults.  I do not wish cancer on anyone - so would much prefer that you help with financial donations!!  I sincerely appreciate the donations so many of you have made in the past for the Leukemia and Lymphoma Society.  If you are able to help again and make this a regular part of your charitable giving that would be great!!!

Tuesday, January 13, 2015

Routine Procedures

Here are a few things I've decided about “routine” medical procedures.
  1. They are only routine for the people performing them. (I've had lots of "routine" procedures once and hope not to have most of them again.)
  2. If they offer pain meds – take them!! (The doctors have no clue what these procedures feel like!!)
 I finally got my port removed last week. You are under sedation when it goes in – so it is like outpatient surgery. When they pull it out they numb the area and then they literally pull it out. An assistant holds the vein down so you don’t bleed out while the doctor stitches it up, and then you up and then off you go. No restrictions, no post op care, you are done.

My doctor chatted with me all the way through it. As he tugged at the port he commented that my body had grown to like it and he was having trouble getting it out… but not to worry he would get it. (Great.) He commented that pulling a port out of an 80 year old woman was like pulling something out of butter, but since I was young and healthy (I guess compared to an 80 year old with cancer I am at least young) my body had healed around it and absorbed it.

Finally it was liberated from my body and now a week later is feeling good. Luckily that is all there is to report on the medical front. I don't go back to my oncologist until early March. I have a post op visit for cancer #2 early Feb but don't expect anything from that that.

The most painful thing of late is getting back in the routine of waking up to an alarm clock versus sleeping in everyday. Now that the girls are old enough they sleep in too vacations and weekends are wonderful! I hope we will all be back in the groove soon but somehow think with the cold weather and dark days we may be in for a few months of dragging in the mornings!!