A Rattle In An Old Car

Sometimes things don’t turn out the way you expect them to.  In the way of review, I have B cell non-Hodgkin’s lymphoma, a cancer in my lymph system.  B cells make antibodies, and I have some cancerous B cells.  The particular sub-type I have is called follicular lymphoma.

Yesterday I met with Dr. Joe Stephenson (my oncologist) to discuss the results of the tests done over the last couple weeks.  The bone marrow biopsy shows that the cancer is not in my bone marrow.  Whew, that is a blessing.  It is also low-grade, or indolent, which means that it’s growing slowly.  That’s also good.

The CT and PET scans show that I have cancer in the upper part of the right side of my neck (where I found the lump), lower in my neck in the general vicinity of my larynx (voice box), and part way over in my right shoulder.  I had hoped for quite a bit less than this.  However, the same scans don’t show any cancer beyond these areas.  The extent to which cancer has spread is rated on a scale of 0-IV, where 0 means that only the original tumor is present and it is small.  IV means that it has spread to locations distant in the body.  Mine is classified as stage IIA.  My condition could be better or much worse.

My cancer is incurable.  This isn’t entirely new news because Joe told me this the first time we met.  He indicated that clinical experience in treating follicular lymphoma shows that treating it at my stage with chemotherapy or radiation doesn’t change outcomes.  In other words, experience has shown that if I were treated right now it wouldn’t have any effect on how long I live.  And no, there isn’t any way to make an accurate prognosis to indicate how long I’ll live.  One journal article I read indicated that a person with follicular lymphoma could live for three years, 25 years, or anything in between.  Based on all the factors involved in my case, Dr. Stephenson’s opinion is that I may very well die of something completely unrelated to my cancer.

However, I’m supposed to see the oncologist once every three months for the rest of my life.  I already have my next appointment scheduled, and it will be for blood tests and a discussion.  If you read my last post (“An Itchy Loaf of Bread”) you have an idea of what body scans are like.  I’m supposed to have body scans at least twice a year for the rest of my life.  They won’t always be both CT and PET scans, but they will be one or the other.  The problem with both of these scans is that you are exposed to some kind of radiation, and I don’t like that.  So I asked Joe if there were any molecular tests that could be done instead, and he referred to something I asked him about the other time we talked:  Gene expression profiling.  He reiterated that although there are experimental studies doing gene expression profiling in follicular lymphoma patients, this kind of test is not yet ready for routine clinical use with this cancer.  It turns out that he does know of such a study, but I wouldn’t qualify for it because I haven’t yet had treatment and a recurrence.  It’s a great blessing that researchers continue to study disease, and perhaps in the next few years there will be a test available that is safer than PET and CT scans.  Joe also again told me that if at any point in this process I want a second opinion, then that would be fine with him.  I appreciate that.

The approach we are using (not treating it now but continuing to do tests) is called watchful waiting.  According to the Wikipedia article, this “is recommended in situations with a high likelihood of self-resolution, in situations where there is high uncertainty concerning the diagnosis, and in situations where the risks of intervention or therapy may outweigh the benefits.”  The last part applies to me:  Treating me now would be of very questionable value but would most certainly have negative impact on me.

Not everybody is familiar with using watchful waiting with cancer.  When I first discussed it with Stephen (my son), he said, “So is it like a rattle in an old car?”  If you’ve ever had an old car, then you may have had a rattle that just wouldn’t go away.  A sound like this can be safely ignored as long as it doesn’t indicate a problem that would negatively affect the occupants, other people, the functioning of the car, or other property.  However, you better pay attention if the sound of that rattle changes, because that could indicate impending doom.  I thought Stephen’s analogy was great, and so yesterday I ran it past Dr. Stephenson to see what he thought.  He asked for permission to use it with his other patients.  Knowing my son as I do, I told Joe that would be just fine.  So, at this point I’m thinking of my follicular lymphoma as a rattle in an old car.

I’ve been told that it isn’t a matter of if I will need treatment—it’s a matter of when.  At some point it is expected that my follicular lymphoma will go from low-grade to mid-grade and from stage IIA to a higher stage.  I am very thankful for modern medicine, and perhaps by the time my cancer worsens there will be treatments that are more effective than chemotherapy or radiation while also having far fewer adverse effects.  I am going to have to listen to this rattle, and Joe is going to listen to it every three months.  Of course, if I find another lump or something else suspicious, I will contact him immediately.

This is not how I expected to begin my 32^nd year of teaching.  How will this affect my wife and the rest of my family?  If there are grandchildren, will I know them?  Will they know me?  Before I saw my test results yesterday one of my students had sent me an email asking me a question.  After her signature she included a reference to the 62^nd chapter of the Psalms.  As I read it, verse five jumped out at me:

“My soul, wait thou only upon God; for my expectation is from Him.”

God has proven to me that He will not fail to provide those things that He has promised.  Why should I expect anything different now?  I must wait on Him for the right answers to my questions.