“Toxic” and “Biohazard” – and that’s the treatment!

Spoiler Alert:  Treatment is WORKING!

I am now five weeks into treatment.  The first day started with swallowing three pills from a medicine container with two color coded labels.  The bright yellow one said “toxic.”  The bright orange indicated the contents should be treated as a “biohazard.”  Comforting.  (For those who don’t know me well…read that last statement as sarcasm.)  Literally with trembling hands, I shook three of those babies into the cap (just couldn’t do the recommended latex gloves)…and threw them back like a shot (of milk, of course).  Went to bed with the medication bottle for nausea within reach.  And so it continued….every night for the past several weeks.

My body has tolerated the medication well.  (I glow green at night….but it beats the cost of a nightlight.  Kidding!)  I’ve had a few blips along the way.  For example, something (I can’t pronounce or spell it) in my white blood cells went to zero – not a good thing.  I was told to limit contact with people and definitely stay away from sick people – so easy when you are a teacher. I only taught two classes (didn’t breathe the whole time) and then got the all clear when I went in for more tests a few days later.  My overall white cell count is still high and my immune system compromised – but throughout I have felt good and still haven’t cracked open that container of pills for nausea.  (Fingers-crossed) Probably the weirdest thing I’ve experienced is that I bruise and bleed easily. Just yesterday I went out to cut the grass. When I came back in I looked like I had just competed in a WWE cage match.  Cuts and bruises in abundance.  Only other explanation is aggressive crabgrass…but I’m thinking not. Weird.

Some very good news to report!!  Theresa and I met with my oncologist Friday.   Most importantly, the treatment is working!!  My lymph nodes have been shrinking noticeably. My blood numbers are showing a good response. And….the results of my bone marrow extraction (always ask for morphine!) confirmed that the cancer is attached to my 13th chromosome  – a really good thing – considering some alternatives I was worried about. Bottom line is that this is a positive indicator that my body should continue to be responsive to my current treatment for a long time.  It’s not a cure…but it is the best we can hope for right now.  We are celebrating progress.  They’ll continue to monitor me regularly….but I’m okay with that.

Finally…I want to again thank so many people for your ongoing support, prayers, good vibes, hugs, messages…and asking how I’m doing. Sometimes it can be awkward asking someone with a chronic condition about their current status. I know.  I’ve been there.  However, asking demonstrates your concern – and I think I can speak for most people I know who are living with these challenges – knowing that people care trumps any awkwardness.  If I don’t want to talk about it, I’ll usually keep it short – and I’ll still be thankful for your care.  Thanks also for your acts of kindness for my beautiful family.  Cancer, grief, and other chronic conditions impact everyone in a family and the length of time the challenge continues doesn’t decrease the need for support.  Again, my heartfelt thanks.

Treatment. It Begins…

I haven’t written in a long time.  I was hoping it would be even longer.  (Never would have been fine.)  However…..my cancer has progressed and treatment is about to commence (a fancy way of saying “0h crap! This can can not be good.”) So, time for an update.

Some quick background might be helpful.  I went to see my oncologist in mid-May. As she was doing her exam, we had this brief (and telling) conversation:

Doctor: Are you still planning to take students to England this year?

Me:  Why yes…in just over two weeks.

Doctor: What date exactly?

I didn’t feel like this conversation was heading in a positive direction.  It wasn’t. Turns out that my blood work up looked like an Etch a Sketch piece of artwork – the cell counts that were supposed to be going down were in fact doing the opposite – as were the ones that were supposed to be going up.  (I never really liked playing with an Etch a Sketch.)  My doctor didn’t appreciate the way this art piece was looking either and even less fond of my departure plans. We “compromised.” If I could demonstrate stability in a week – she would give me permission to go on the trip.  Enter wheatgrass juice. (Yup…just what it sounds like.)  A brief Google search suggested that it improves platelet counts.  I began drinking it morning, noon and night. I have no idea if drinking grass really made a difference, but a week later my platelets were up and my bags were being packed. (It was a great trip by the way.)

I returned and the real action began. My counts were worse and it was time for some more tests – I’ll spare you the details – but let me just say that I think it’s time that doctor’s begin offering frequent flyer points as an incentive to show up.  Next came the decision of which treatment to use to put this cancer into remission (since there is no cure at this point).  Behind door #1 was aggressive chemo and immunotherapy.  Behind door #2 was what is best described as chemo in a pill – one that specifically targets the cancer cells in my blood.  I picked door #2. So….starting Friday, I begin taking three pills at the same time each day. (Did I mention that you have to wear gloves when you touch these pills?? Seriously?!)  I’ll take them as long as they work. The current research shows most folks getting about five years of remission while on these meds.  When they stop working…chemo is still an option…but we’ll be hoping for other treatments…or even better, a cure.

Sometimes people ask about my use of humor regarding my experiences with cancer.  Here’s what I think: Cancer can steal a lot from you – peace of mind, a sense of healthiness, etc. But at some level I have to maintain some control.  Humor has always been my best defense and I have no intention of allowing cancer to control it.  Don’t be fooled though.  I hate cancer. Having it sucks. It scares me.  It makes me beyond sad and angry at times. But I have to take control where and when I can. So sometimes I laugh. (I was never good at whistling in the dark anyway.)

Does this medication have side effects?  Yes.  Do I know which ones I’ll experience.  Nope. What do I need?  Your acts of friendship for both me and my family.  Cancer impacts the whole family.  Your hugs, prayers, kind thoughts, good energy and willingness to pause for a moment on occasion and commit to  “random acts of kindness” will always be welcomed by anyone who is living with a chronic illness or grieving a loss.  My thanks in advance.

Lucky Number 13!

Okay…13 is often maligned as an unlucky number. (Apparently, by tradition, there were 13 steps to the gallows.  Thank you Wikipedia for that little upper!)  No longer. I went to see my oncologist last Friday.  My white blood count is at 13.1 (thousand).  Normal is 4 – 10 (thousand).  What does that mean in the bigger scheme of things?  It means I continue to be stable, don’t need to start treatment yet and (barring any changes)…I don’t need to go back until May.

Thirteen (.1) is a number I will take. (I’m also now walking under ladders and stepping on sidewalk cracks.  Can’t hurt right?  I am however staying away from anything that could resemble the gallows.)

It’s been just over a year when all of this started.  At this time last year I was being assured that it was probably just an infection that had caused enlarged lymph nodes in my neck.  A lot has happened since then. (Trump disaster…but I digress.)  I’ve moved past the shock of the initial diagnosis…but frankly still think it all sucks.  I’ve come to appreciate in a whole new way the kindness of others – notes, texts, hugs, messages of all kinds…and the folks who consistently just ask, “How are you feeling?”  (And those who also respect the times I respond with “good” and don’t feel like talking about it anymore.)  Some days I grieve the times when I thought of myself as being really healthy (for a man just approaching middle age)…and I am frightened by what could come.  Other days I feel good both physically and mentally.  Up, down, up, down…..that’s the way it goes. (I think there might be a song in there somewhere…unfortunately it is likely a country tune.)

I am on sabbatical this semester.  Interestingly, I started by being worried that spending so much time alone (working like a dog at home, of course) might not be the best thing for my mental health.  Fortunately, that hasn’t really been the case.  (Okay…..sometimes it is the case, but less often than I thought.) I am enjoying the work I am doing and the people I am working with on a really interesting research study. (Sleeping in on occasion is another perk! But again…I digress.)

So that’s the update I have promised a number of people over the last months.  In my new reality I see 13 as a great number ….and I’m shooting for 12.  (Who would have ever guessed this is how I would come to think of things…..??)

Thanks for your on-going support.

 

 

 

Going Mental….

My British friends have a lot of great phrases and “going mental” is one of them.  It’s what I want to say sometimes when people ask me how I’m doing. “Hey great…just going a bit mental.”  Frankly, it’s just a lot easier than saying that I’m feeling so anxious that I just want to throw up.  (A better response too when you’re asked how you are doing when you are all having dinner! That “throwing up” part can really put people off….I know, trust me.) And frankly…having cancer really can make you go mental.  Fortunately, I don’t feel like this all the time.  Often I really do just feel pretty great.  But there is another way that I personally think of this phrase.  Sometimes I get really introspective (mental) and my thoughts can drift for awhile. (Call me at 4:00 a.m. some night and you’ll often find me going mental in this way.) I guess this is the nature of things when you have to let go of the control you once believed you had over your body and you realize that tomorrow really is a new day and you’ll just have to see where it takes you. (I’m banking on a retirement home someday in the very distant future….one where everyone wears khaki pants and Ralph Loren shirts. Just can’t do that spandex look!)

Physically, I am doing well most of the time.  We met with my oncologist a few weeks ago. She had the results from my latest round of blood tests. Using part of the 5 or so gallons of blood they drained from me again….they did a chromosome study.  I won’t pretend to completely understand the results…but she said that they were encouraging.  The cancer is attached to one of the better chromosomes. (That was such a weird sentence to write! I have never in my life thought that one chromosome might be better than another! ) I’ll take it though. Even better, although my white cells are still elevated, I don’t need to start any treatments at this point – or the foreseeable future. (So my receding hairline is just age related. Damn.)  I will see her again in October when we start the tests again……

When I am not feeling as great, it is usually one of two things.  My bones are aching or I’m nauseous.  The latter is the biggest pain.  It turns out that I have a lot of enlarged lymph nodes in the trunk of my body.  Add to that the “fatty liver” fun….and you get nausea.  (I like to think of this as the lymph nodes in the area of my stomach and that “fatty liver” getting together and having an on-going buffet….kind of like the Romans used to have.  They don’t seem to know when to stop and I pay for their gluttony.)  Add to that a dose of anxiety and it’s a recipe for $#%&! (Hey, I work at a Christian college….have to think about the words I put into print.)    Tonight in fact I am meeting with a dietician who has some very specialized knowledge of the diet and CLL.  I suspect that by morning I’ll be restricted to eating alfalfa sprouts and tofu.  Good times. Stay tuned.

So that’s the latest update.  I do want to add my thanks to so many of you for your acts of kindness.  They are greatly appreciated.

 

 

 

Joining the Hell’s Angels…?

Yeah…thought that might get your attention!  More on that later….But here’s the short version of this blog post for those who want just the “facts.”  England – Excellent. Mental health musings – the good, the bad and the ugly. Physical health update – more blood work coming soon. For a more detailed narration, read on:

It’s been nearly 2 months since our first visit with my oncologist.  Time flies when you’re having fun (read deep sarcasm here).  The shock has worn off, but the mental work continues.  At my second visit the doctor gave me the okay to head off to England for my nearly annual “June Term course” with 12 students from Hope.  She told me this would be a good time to give myself a break from all that is cancer related. I left a few days later. My time in the UK was “brilliant” – as my British friends say.  I think of it as my second home and fully enjoyed spending time with the many wonderful friends I have there – and even making some new ones.  A combination of serious talks and from the core laughter over food, tea and a hard cider or two were greatly appreciated.  They do indeed “keep calm and carry on” – and they give great hugs too.

I also had the opportunity to work with 12 wonderful students in England.  If you ever worry that we might be leaving the world in the hands of uninvolved millennials – have no fear.  To a person, they were kind-hearted, thoughtful, reflective and driven by a desire to touch the lives of their future students.  I loved hanging out with them.  (In the interest of fairness, we did have a few “political debates” that could be mildly troubling – but were mostly amusing!) My colleague/friend Bill and I were labelled by the group. He was the “dad.”  (Well deserved.) I was the “crazy uncle” – I’m taking that as a  compliment.

So….England was great…but you know that old saying: “you can run, but you can’t hide”?  When cancer is living inside of you…there is no place to hide – not even a currently United Kingdom.  So yes…I took my doctor’s advice and tried to give myself a cancer vacation of sorts – but there are always those quiet moments (even in a crowd) where my mind wanders back to the new reality that is my life.  The mental health work continues….

On the topic of mental health (yah…here comes the bit about joining the Hell’s Angels)…one “side effect” (can’t figure out the right word or phrase for this) is a deepening sense of curiousity or wonder.  I’m less concerned about doing it all and more interested in trying to stay in the moment and mine it for all it’s worth. People and new adventures seem to be taking on even greater importance than they did before. Example?  My one goal on a long flight is to not have to talk much to whomever I end up sitting next to. However, I spent a good portion of my flight to England talking to a young guy about his recently completed biking trip through New England – and I was honestly interested in hearing about his motivation (triathalon training) and adventures (a broken bike that couldn’t be repaired).  And it got me to thinking….what would it be like to join the Hell’s Angels? (Only connection here is a “bike.”)  What would that life be like? How do they view the world? For those of you who really know me though….the Hell’s Angels would have to switch their attire to khaki pants and a Ralph Lauren dress shirt before I’d give it serious consideration.  But it’s a thought….stranger things have happened (think Trump).  I don’t see these “side effects” as “lessons” I’ve somehow gained from having cancer. Cancer sucks.  I’ll never give it that much power.  I guess I’ll just stick with “side effects” for now.

What’s next?  In mid-month, I’ll have another five gallons or so of blood extracted for more tests. (This part is starting to feel like “Groundhogs Day”- only less humorous.) Then another meeting with the oncologist at the end of the month.  My symptoms continue to be fairly mild, so I don’t anticipate having to start any treatments yet.

That’s it for now.  I wanted to write about the kindness of others – especially a “project” my amazing wife, daughter, her boyfriend and my sister-in-laws completed while I was gone…but that deserves a whole blog.  Coming soon!

Thanks for your on-going thoughts, prayers and kindness.  They continue to be felt and appreciated.

And a “fatty liver” too? Seriously!?

So after weeks of emotional ping-pong, why exactly am I so offended by the last thing my oncologist said at our meeting last Friday….”oh, and you have a bit of a fatty liver.”  Seriously? So apparently my current way of coping  with cancer (eating anything with sugar as a main ingredient) is no longer a really viable option. Who knew?

As it turns out “fatty liver” is a real thing – and it has nothing to do with how well your butt looks in your jeans.  (I know. I asked.) In the past it was something that was most often related to alcoholism.  (No comments from anyone who knew me in my college days required here.)  In any case, it is best treated by a Mediterranean diet and no sugar.  (I have to note here that I have looked at the ingredients list on what I thought of as my healthy foods and discovered that sugar is high on the list – although in my defense, most of them contain “organic” sugar. Apparently, organic doesn’t make it any healthier.  Again, who knew?)

Besides the “fatty liver” comment, the meeting went as well as a “chat” with your oncologist can go, I guess.  The results from my CT scan on Tuesday showed plenty of enlarged lymph nodes in the trunk of my body.  Unlike my fatty liver, they are apparently all on the small size – the largest being just over 2 cm.  To provide perspective, lymph nodes at 5 cm or more are an indicator for starting chemo treatments.  Oddly…to my new way of thinking, this is good news.  I’ll have more blood tests in two months and meet with her again to reassess the situation.  No treatments needed at this point – which was the high point of the meeting.  And so it goes…..

It’s been a week of emotional highs and lows.  I suspect that will be the case for some time.  I’m not sure I’ve ever felt so loved and cared for by so many people.  Thank you. So many notes, texts, phone calls, etc. of support.  One thing I have discovered is that I have to take a break from thinking about cancer at times. So….if I don’t respond to your messages, please don’t think I haven’t appreciated every word.  Indeed I have and will continue to.

The lowest point of the week was last Tuesday. It was time for Tee and I to tell Kelsey and Keenan. This is the kind of information no parent wants to share with their children.  We had already done it once when Tee had breast cancer….and there is no good way to do this.  However, we will always be indebted to our great friend Butch TerHaar for providing us with a small and very private room in our favorite restaurant (aptly called “Butch’s” in Holland).  Thanks also to our friend and server Ryan. The poor guy never knew what he would find when he brought in the next course of our meal – tears, laughter, sobbing…..a total shit show frankly.  But I am so proud of Kelsey and Keenan. They are strong, caring, smart and resilient young adults.  Couldn’t love them more.   We will do this together.

So what’s next? On Saturday I leave for Liverpool, England with 12 students and a colleague/friend.  To be honest, I’m a bit nervous about leaving. (It’s not the work part. I’ve been doing that since I discovered the first enlarged lymph node.  Sometimes it’s the work that keeps me sane.) However….Tee, Kelsey, Keenan and so many family and friends have provided much needed emotional support. How will it feel being so far away from that as I am still “adjusting?”  Honestly, I don’t know.  But I do know that I have some amazing friends in Liverpool.  After several years of going there, I think if it as my second home.  And as I have mentioned before, they invented the phrase, “Keep Calm and Carry On.”  I think I’ll be in good hands.

 

 

 

Oncologist

Oncologist.

It’s a scary word – one you never want to precede with “my.”  Unfortunately, now I do.  I’ve been diagnosed with a form of Non-Hodgkins Lymphoma.  (If you are interested in knowing more about the specifics of this, see the lymphoma page.)

Between Christmas and New Year’s Day I felt an enlarged lymph node on my neck. I went to the doctor the next week and was told it was likely due to an infection. The doctor told me to give it six weeks. A week later, another enlarged lymph node appeared. Back to the doctor’s office. This time, I was prescribed a ten day course of antibiotics. No change.  I decided to give it more time – mostly because I didn’t want the scheduler at my doctor’s office to label my file with “neurotic frequent flyer.”

Mid-March and back to my doctor’s office. He referred me to an ENT.  On April 6, I saw the ENT who did a fine needle biopsy and ordered a swallow test at the hospital for two days later. Just over a week later, I got the results – not positive for cancer, but indicated there might be a possibility.

On April 29 it was back to the hospital for surgery. The lymph node was removed – along with a spot on my tonsils and the bottom of my tongue. (Living the dream here!)  Results were positive for the lymph node – but fortunately benign for the other spots. May 7 off to see another ENT. (Long story.)  Another biopsy – this time of the adenoids. Positive for lymphoma.

Saw my oncologist at the Lacks Cancer Center in Grand Rapids on May 17.  She carefully explained that this type of lymphoma is treatable, but not curable.  It’s important to emphasize the word treatable here.  The goal is to watch the symptoms and then treat to send the cancer back into remission.  Remissions can last for a very long time – indeed, for years.  Currently my symptoms are fairly minimal – so no plans to start treatment yet.

Treatment is likely to involve a targeted type of chemo. I’ve had about 2 gallons of blood removed and a CT scan.  The results of those will determine which chromosome the cancer is attached to and the CT scan will determine the size of the lymph nodes in my neck, abdomen and pelvic area.  Best case scenario, I won’t have to start any treatments in the foreseeable future.

How am I feeling?  People often describe these things as a journey or a rollercoaster ride of emotions. Those don’t seem to work for me. I’m not going on a trip and there are no thrills involved. Honestly, it just sucks. Sometimes I’m angry, or numb, or beyond sad…and other times optimistic.

Friday morning we meet with my oncologist again.  She will share the results of the latest tests and then hopefully I won’t see her again for another 3 months…and then another 3 months….and then….well,  I’m sure you get the picture. I’ll share results soon after.

My British friends have a great phrase: “Keep Calm and Carry On”….and that’s the plan. Indeed, I’m off to the UK on June 4 with a great colleague and 12 wonderful Hope students.

Thanks in advance for your positive thoughts and prayers.