Up Up and Away is my tumor marker…Yikes!

So, my tumor marker doubled last week. I had a slight panic attack since I really don’t feel that horrible. I talked to my doctor who was in a meeting, but stepped out to talk to me. He explained that I really needed to see if this trial drug works for 3 weeks and have a scan to see what is the reality with the cancer. He also explained to me that if I add weekly chemo now, my bone marrow and other body systems would be continually beaten up which may shorten survival time. In other words, get worse before I can get better. I see his point as every doctor who sees my list of chemo practically faints and is in disbelief.This makes things difficult as I would rather not have the cancer grow, but we don’t really know the whole picture until I have a scan. I looked at my past scans to be prepared what may appear and to know how far this cancer has grown or not grown. Basically, I pretend I am the radiologist.

My days have been filled with the cancer job to plan, to talk, to guess, to pray, to hope, to dream, to cry and to attempt to stay in the now. The days pass and the week goes by. This week my tumor marker is still on the rise, but I try to focus on the fact that it stopped doubling or tripling, so it may mean that this new trial is working. All drugs are not without side effects, so now after two weeks I feel the effects. Anything that allows me to walk, allows me to put the other side effects to the back of my mind. We are at a strange place with taking a lot of chances because there is no known routine or treatment. I have to believe at my doctors will not let me go to far, but I also know that there are others who scream louder and higher. It is a strange tightrope that I walk and not very comfortable. I am realizing in the cancer job that I need to get my 15 minute break from cancer. I just haven’t quite gotten into that routine, so I will make every effort to get my break. Isn’t it a law?  Until then, we will be going to UCLA tomorrow to do tests for the trial. As much as I graph the numbers and review my coffee table book of labs and scans, there are no real answers that I can find.  I can try to focus on the daily stories of middle school, but last week proved to be a mixture of pain and sadness for Alex. It was one of those bad timings and good timings all at the same time. Typical middle school behavior with the “you’re ugly, you’re whatever, to the your mom is going to die”…not sure how it all happened, but unfortunate remarks made by a classmate was a trigger for Alex. Luckily, his friend jumped to his side to reassure him of the silliness of the statement made. Alex handled the situation great with meeting with his teacher on his own and talking to the office. Again, it is times like this that I wish he wouldn’t have to think about any of this except for the joke about “you’re ugly”. We all moved on especially Alex when a classmate was whispering in his ear in band. Alex said that he looked straight ahead and ignored this boy, but his band teacher said to the classmate, “stop nibbling on Alex’s ear and whispering sweet nothings”…his band teacher is always entertaining! Alex was equally confused with the meaning of sweet nothings.
I really wish I had answers or just a slight hint of a plan. I do know that we will be going to Honolulu for spring break, so I can dream of Hawaii again. Until then, must stay with the one day at a time.

2 Responses to “Up Up and Away is my tumor marker…Yikes!”

  1. Tara Says:

    I’m sending tons of love your way, Joanie. Kirk and I have walked this road with family and friends before. You’re going to make it. You’re a fighter. You can do this. Please, let us know how we can help. Love to you and Jim and Alex -Tara

  2. Pendar Says:

    Praying for you Joanie XOXO!

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