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.

An Itchy Loaf of Bread

In preparation for the PET scan the nurse began injecting my arm with a solution of a glucose derivative that had been radioactively labeled with fluorine-18.  With a short half-life of only…wait, wait, this isn’t a chemistry class.  And then I began sipping a solution containing an organic iodine compound that would give better contrast to the images from the CT scans. It had an odd sort of “I’ve been cleaning up a dirty basement or garage” taste, and believe me, it won’t make it into the Coca-Cola Freestyle lineup.  After waiting for an hour so that my cells would absorb the PET chemical, I was ushered into the room housing the large cylindrical machine that would do both the CT and PET scans.

Another nice lady helped me climb onto a long, thin table with a pillow made of a cushioned U-shaped rigid frame. This would make it easy for even me to keep my head still.  She put a cushion under my calves so that everything would be positioned properly for the scans.  It also helped my formerly-broken-but-now-repaired-with-titanium-parts back feel comfortable, and I was thankful for that.  She hooked up my IV to a solution of another CT contrast dye and then a motor moved me into the machine.  The dye gave me a nice warm sensation through various parts of my body, particularly noticeable in my pelvic region.

“HOLD YOUR BREATH,” the machine commanded me in a stern male voice that probably came from some technical guy who hadn’t had any human contact for 6-12 months except through texting.  Deep breath, hold it.  I watched the top of the cylinder over me as the machine slowly sucked me into its bowels.  And then it stopped.  “BREATHE,” he ordered.  You don’t need to tell me that twice.  And my body moved back out.  “HOLD YOUR BREATH.”  I noticed that there were little labels in various places above me that said, “LASER APERTURE Do not stare into the beam.”  And they were all upside down!  That was annoying.  I’m pretty sure that these labels were there in order to warn Male Machine Man so that he wouldn’t harm himself while he was aligning the many parts in the scanner.  “BREATHE.”  Oh, yes, yes, yes, I will.  “HOLD YOUR BREATH.”  I had no idea that I could still hold my breath for such a long period of time.  And out my body went again.  “BREATHE.”  I was starting to feel like a large loaf of bread in an oven, with somebody pulling me out every now and then in order to see if I was done.

The nice lady disconnected my IV, had me put my arms by my sides, and then gently locked me in place with two huge pieces of Velcro so that I wouldn’t move.  I’m pretty sure that this is what the Inquisition would have been like if Spain had been more compassionate and politically correct.  And then the large EZ Bake oven started back up again, baking me one section at a time.  Thankfully MMM wasn’t barking orders at me anymore.

You can think about a lot of things during a 30-minute PET scan.  Things like, “If that smoke detector on the ceiling has americium in it, couldn’t that interfere with the scan?”  You notice the whirring of the machine, the sound of the HVAC system, the flow of air over your body, and the local country-western station that was being played in the background just quietly enough so that you couldn’t understand most of the words. It sounded something like somebody gargling with corned-beef hash.  And then the itching started.

The worst kind of itch is the one you can’t scratch.  During one of the times that my head and part of my torso were sticking out of the far end of the machine I suddenly developed an itch.  I didn’t know if it was due to the AC blowing on me or the result of a traitorous hair sticking me in the forehead.  Either way it didn’t matter–it just itched.  Helpfully the inquisitor had made sure that the strait jacket was snug.  I’m pretty sure that Houdini worked at a burger joint until one day during a PET scan he realized that he could scratch his head only if he could get out of the Velcro.  I manfully endured it, and in a few minutes it went away, shortly before the right edge of my right eye started itching.

And then there are the more serious thoughts. What would it be like to go through this alone?  What do people who don’t have relationships with God think about during PET scans?  In an email one of my sisters-in-Christ reminded me of Deuteronomy 33:27:  “The eternal God is your dwelling place, and underneath are the everlasting arms.”  Why wasn’t I worried about the outcome of these tests?  Why wasn’t I afraid?  I again heard the words of Christ, “I will never leave you nor forsake you.”  (Hebrews 13:5)  Although I was in the scanner, God was gently cradling me in His arms, comforting me.

Bone Marrow Needle Biopsies Are Fun!!

Nurse Practioner:  "Are you comfortable?"

Brian:  "As comfortable as a guy can be with two strange women looking at his rear end."

NP (cheerily):  "We've got two more coming!"

And they did.  So began my procedure today.  She then asked me what I do, and after I told her that I'm the chairman of the Chemistry Department at BJU she began to confess her historical experiences in chemistry courses (beginning with high school).  I absolved her of everything.

They swabbed me (well, part of me, anyway) with some kind of iodine solution, sprayed the target zone with something cold, stuck a needle in the bull’s-eye, and then injected me with lidocaine.  And I began thinking about the fact that lidocaine affects ion channels in neurons.  It was clear that the NP was teaching one of the other nurses how to do the anesthesia.  I felt considerably better after the NP told me that she would be the one to do the actual biopsy.

After the relevant portion of my rump was thoroughly numb, the NP inserted a needle and pushed it into my pelvis.  An odd feeling was followed by some pain as she aspirated bone marrow through the needle, which I'm pretty sure must have been at least 1-2 inches in diameter.  She said that I am "a giver," meaning that it was easy to get the bone marrow out.  There are some people where it's difficult to get it out and, well, I suppose they have to call Roto Rooter in assist.  It’s a little strange listening to four medical personnel discuss your procedure as they perform it while at the same time occasionally joining in the conversation.

She prepped some slides for pathology and then pushed the needle in deeper and aspirated some more.  Whew, we were finally done with the hard part.  The procedure wasn't really that painful: it was the idea of the thing that bothered me and gave me the willies.  She pulled the needle out, they bandaged me up (“keep it dry for 24 hours”), and helped me roll over and sit back up.  After getting off the table and standing up I thought I’d have a little fun and so I said, “I feel like I’m going to faint.”  Everyone became concerned.  They felt much better after I told them that I was kidding.

That’s one more thing off my bucket list, and I highly recommend that you add it to yours.

Testing the Teacher

I’d been thinking about my appointment today, praying about it, and praying for my oncologist.  He (Dr. Joe Stephenson of the Greenville Health System Oncology Institute) and I met for the first time today and we had a productive discussion.  He found it interesting that I’m the chairman of the Chemistry Department at BJU and thanked me for teaching all these years (now over 31).  I didn’t expect that, and it was very nice of him.

He said that my follicular lymphoma is “low-grade,” as opposed to mid- or high-grade.  This is good and bad.  It’s good because it appears to be slow-growing.  It’s bad because it’s considered to be incurable.  This doesn’t mean that I’m going to die soon, but it does mean that if it remains in the state it is in right now, then I’ll probably have to just live with it for the rest of my life.  But it should be medically manageable.  In other words, we’ll do what is called watchful waiting, which means we’ll watch it and respond to what we see.  Will I need chemotherapy now?  I don’t yet know.  Will I need it later?  That’ll be determined by watchful waiting.  Oh, and low-grade follicular lymphoma can progress to the other grades, and it can also turn into diffuse large B-cell lymphoma.  It doesn’t sound like watchful waiting is optional.

After reading and thinking about things, I went into this appointment convinced that we needed to do more testing, and in particular that a PET scan would be a very good idea.  Before I had a chance to bring this up, Joe said, “We need to do a PET scan.”  Thank you, Lord, for answering prayer in exacting detail.  He also said that we need to do a CT scan of my neck.  And a CT scan of my chest.  And a CT scan of my abdomen.  And a CT scan of my pelvis.  And a biopsy of the bone marrow in my pelvis.  OK, well, I did think we needed more testing.

The bone marrow biopsy will be done next Tuesday, and then all of the scans the next Tuesday after that.  Anybody that knows me very well has observed that I’m a fidgety kind of guy and that I rarely stay still at all, much less for long periods of time.  How in the world will I be able to stay still for several hours of scans?  I sure hope it’s not like the x-ray of my back and CT scan of my head when I broke my back in 2011.  This was the result of what I call The Fall of Brian (as opposed to A Lump of Brian, which as you know was recently removed).  Although I was loaded with morphine–no, make that really, really loaded with morphine–I was still in serious pain and fidgety.  And I wiggled, and they pulled the x-ray sensor out from under my back, checked it, came back and said, “We have to do it again. Try to stay still.”  And then they stuffed the sensor under my back again.  Excruciating pain, deep breath, try to stay still.  I think we did it one more time after that.  And then they did multiple CT scans on my head.  “Try to stay still.”  I hope I can.

Joe and I will discuss the results of all the tests on Friday, September 26, and then I’ll know if I need any chemotherapy.  Today he said that if chemo is necessary he expects it to not be the harshest kind.  That’s reassuring.  I wonder, what are the side effects of not-the-harshest-kind of chemotherapy?

It appears that I will be in this for the long run, something I never expected.  Over the last few weeks I have anchored my soul to the words given in Hebrews 13:5:

“I will never leave you nor forsake you.”

How precious those words are, particularly during difficult times.  No matter what happens, no matter where I am, I will never be alone.  God will be with me, as he is right now.  He continues to give me peace and comfort.  And the comfort continues:

We can confidently say,

“The Lord is my helper;

I will not fear;

what can man do to me?”

Facing the Unknown

I’ll be seeing an oncologist for the first time on Tuesday afternoon next week, and I have some questions.

How far has it spread?  Cancer cells are cells that are out of control and can potentially invade other parts of the body, a process known as metastasis.  They can wreak all sorts of havoc in the liver, lungs, bone marrow, brain, and other organs.  In my case Dr. Rob Brown expertly removed a cancerous lymph node measuring roughly 1.5” x 1” x 0.7” from my neck.  Normally a lymph node in the neck is about the size of a grain of rice.  I had figured that I might have a significant scar after the surgery and thought I might start the first day of class with something like, “Hi, I’m Dr. Vogt, your chemistry teacher. You can call me Dr. Scar.” Well, Dr. Brown did such an artful job that at this point it appears that the scar will look like a crease on my neck, which isn’t at all out of place on a 58-year old bloke.  For some reason Dr. Crease just doesn’t sound as cool as Dr. Scar.

My cancer is in my lymph system, which circulates a clear fluid similar to blood plasma throughout the body.  The lymph system is an important part of our immune system.  Lymphocytes are white blood cells and in the lymph system they are located primarily in lymph nodes, but lymphocytes also circulate through the lymph system.  I have cancerous lymphocytes (hence the term lymphoma), and so it seems like some of those cancer cells must be circulating throughout my system.  Are there any other cancerous lymph nodes?  Not that we know of.  Will we find out?  I hope so.  I read the printed pathology report I got on Wednesday and it indicates that the particular kind of B cell non-Hodgkin’s lymphoma I have is called follicular lymphoma.  Of course follicular lymphoma is bad, but it actually has one trait that is good. You can look it up on Wikipedia if you’re interested.

How will the treatments affect me?  I assume that the oncologist will discuss chemotherapy and radiation with me, but of course I don’t yet know what treatments will be appropriate.  Radiation damages the skin in the area that it is administered and can result in blistering and, since the problem is near my throat, potential difficulty swallowing.  I hope it wouldn’t affect my larynx, because a lot of what I do in life requires me to speak.  Chemotherapy has a well-deserved reputation of causing serious side effects.  I rather doubt that I’ll look good without any hair, and so perhaps I’ll start a hat collection of some sort if that happens.  Then there’s the possibility of neuropathy, where the chemo treatments damage nerves and can lead to pain and numbness and can, for example, make it very difficult to walk.  Nausea is never fun, but there are drugs to help deal with that.  Being extremely fatigued is not fun, and it will also make it difficult to teach.  In college we don’t just call for a substitute. Who will take my teaching responsibilities if I can’t do it myself?  Thankfully I have very supportive colleagues who have already volunteered to help.  There is that one course, though, for which I’m the only person on campus qualified to teach.  What will happen there?  Who will cover my responsibilities as the chairman of my department?  One of my colleagues has agreed to do so.  Oh, boy, I work with wonderful people.  Who will cover my program coordinator job?  I’m the only academic advisor for one of the degree programs offered by my department, and I’m the only person that has ever advised students in this major.  Who will advise these students?  Oh, wait.  I’m also a husband, a father, a Sunday School teacher, an elder at my church, and co-owner of The Vogt Estate.  To what extent will I be able to fulfill these responsibilities?

Will I survive?  Survival statistics are just that, just numbers.  They are very helpful when describing large numbers of patients, but they don’t always apply to individuals.  The average U.S. adult male has a waist size of 39 inches, but there are lots of American men with waists of much different size (just look around the next time you’re in Walmart or McDonald’s).  Similarly, cancer patient survival rates are averages and don’t necessarily pertain to a given individual.  Here’s a similar example.  When my mother had heart bypass surgery in 1997, we were told that 97-98% of such patients survive.  She was in the other 2-3%.  So, although statistics may be helpful in making one feel better in a broad sense, one shouldn’t treat them as though they are accurate predictions of some sort.  The fact of the matter is, I don’t know how this is going to turn out.  My surgeon doesn’t know.  Doubtless my oncologist has experience, statistics, and reasonable expectations.  But he won’t know how this will turn out, either.

There’s enough here for me to spend a lot of time consumed by worry and fear, and I haven’t even mentioned everything that I’ve thought about.  How in the world am I supposed to deal with this?

Some of Christ’s most beloved words are recorded in Matthew 11:28-30:

Come to me, all who labor and are heavy laden, and I will give you rest.

Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.

For my yoke is easy, and my burden is light.

I need this kind of rest, rest for my soul that rejuvenates me.  Without it I’ll be faced with unrelenting turmoil, and it could wear me out mentally, emotionally, and physically.  But this peace has a condition attached to it:  In order to get it, I must go to him and agree to have his yoke placed upon me.  A yoke is a wooden contraption used to connect two oxen for plowing a field, and here Christ uses the term figuratively.  He means that I must willingly embrace his commandments and obey them.  All of them.  I must give myself and my life to him.  He promises that in return he will deal kindly and graciously with me (my yoke is easy) and that the tasks he chooses for me will be light.  He will also give me refreshing, calm, quiet, rest in my soul.

Many years ago I took Christ’s yoke upon me, and after being diagnosed with cancer I examined myself and reaffirmed my commitment to him and his purpose.  A lot of people have been praying for me, and I am very thankful for that.  Christ is honoring his promise to me and he is answering the prayers of his people.  Most of the time since my diagnosis I have been filled with peace.  Yes, there are times of struggle.  For example, one evening last week about an hour before I went to bed I had a terrible struggle with fear.  I discussed it with God and it evaporated before I went to bed.  Most of the time I feel like I’m sitting in a river of peace, with peace sloshing around and over me in endless supply, and I can drink as much of it as I want anytime I feel like it.  This is not me gutting it out or deluding myself, nor is it the result of any medications or the placebo effect:  This is God keeping his promise and giving me rest in my soul.  This is the way to face the unknown.