Friday, September 26, 2014

I Don't Mean to be Greedy...

     One would think that after returning from the cancerGRACE Patient Forum in Boston on September 6th and after learning about new medications I can try when Xalkori stops working for me, I would feel more relaxed.  Initially, I did feel better about my future options.  On most days, I still feel relief that there is a new targeted therapy that I can try, (if/when I need it), and also another one which is expected to be FDA approved in the next couple of months.  I learned about other targeted therapy and chemotherapy strategies that clinicians are using for patients like me.  However, I've also found myself thinking about what these medications and strategies really mean for me. 

     When I was first found to have stage 4 lung cancer, the words "terminal cancer" hit my ears and began to come out of my mouth. I actually heard myself saying, "I have terminal cancer" and, "There is no cure for me."  I just Googled "terminal cancer" and here's what I found:  

"A malignancy which is expected to cause the patient’s death in a short period of time—i.e., weeks to several months"
     In the beginning, saying I have terminal cancer was accurate.  However, with Xalkori working well for me, I no longer say I have "terminal" cancer.  But then...what do I have?  How is my illness characterized?  Sadly, the words, "There is no cure for me," are still true and I hear myself saying that phrase, occasionally.  
     For right now, patients in my situation stay on a targeted or chemo therapy until it stops working.  Then we try another regimen and stay on that for as long as possible.  We go from one regimen to the next.  If we can get several months to a few years out of each regimen, perhaps we can cobble together enough time for researchers to come up with a cure.  Boy...I sure hope researchers are able to keep coming up with new targeted and chemo therapies to keep me alive for while.   
     I'm not ungrateful in any way. The cancer researchers who developed Xalkori are the ones who have made it so I don't have to say that I have terminal cancer. They have advanced the field so that stage 4 lung cancer can now be viewed as a chronic illness.  Much like people with diabetes watch their diets, monitor their blood sugars, and inject insulin - while waiting for a cure, I'll take my targeted therapy, will switch to a new therapy when needed, and will continue to wait for a cure. 

     I don't mean to be greedy...but a cure would be really awesome.



Tori Tomalia said...

Well said, Luna. I too am very grateful and feel like one of the lucky ones. But a cure sure would be nice....

Anonymous said...

Oh Luna, I can't imagine if I had to prepare myself each day like you do, with the disease that you have. Yes, it is blessing that you have had extra time, but how much extra time are you going to have is the question.

I just went to a funeral of a healthy, 22 year old girl, who had developed seizures over the last 2 years of her life. The doctors could not figure out why. The seizures had progressed from small ones, to the most recent ones, that were grand mal. She only had 2 grand mal seizures over the last 3 months. She was found at home dead. No one can understand the why. No one expected it. That is how it happens for some and others are given time to prepare.

The reality for all of us, is that we really don't know how much time we have on the earth. In some ways, you are fortunate, to have the opportunity to be forced into thinking about your potential end of life that could be sooner rather than later. Most of us, do not spend much time thinking about it. People just think they will die someday, in the way distant future, when they get old. It doesn't always work that way. I have seen so many die, in my career, of all ages and some very unexpectedly. I would like to think, that I look at each day, as the last one. My faith helps me to know where I will go, as well as my children. No one has a guarentee of tomorrow.

My boys are going to Egypt, with their father, to a cousin's wedding. They will be there for 3 weeks. I have faith, that if something happens while they are there, it is okay. I know that I will see them again in Heaven one day. I am not saying that I would want it or that it would not be incredibly hard, but there would be hope to hold on to.

It is exciting to know that you have future options also to look forward to. Research is incredible in the cancer field today. There is hope for you every day.

These are just some of my thoughts that I had while reading your blog today. Life can be so challenging for people. I am here for you and love you. I wish I could afford to come for a visit, but I just can't right now. Your special friend, Kathy, in Omaha.

Luna O. said...

Thanks for posting your thoughts. You're right, I think about my mortality everyday. Most days those thoughts serve to remind me to make the most of my time here on Earth. Occasionally, I get sad. You are, and always have been, a dear friend.

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