Moving on…it’s always so hard to do. It seems like just when you are in a place “where everyone knows your name”….it’s time to leave everything behind and head in a new direction. New people, new places, new bathrooms to locate……..Oh wait, I should probably clarify here that we aren’t moving to a new house!! This is all just a shameless hustle to get you to read this post! Truth is, my oncologist moved from Lacks Cancer Center to the Lemon-Holton Cancer Pavilion….and I am moving with her. (I have already located the new bathrooms…so no worries!) As much as you can love a place with “Cancer Center” in its title…I have loved Lacks. Amazing people work there everyday and they really do know your name. But when your oncologist tells you she is moving, you go with her. (Actually, it involved a little bit of putting on my most winsome and pathetic game face and asking her if she’d let me go with her. Oddly, she seems to enjoy my sense of humor and agreed to take me along.) So….now I make my pilgrimages to Lemon-Holton…where I am discovering that the people there are pretty wonderful too.

How’s my health? Stable – a very good word when you are talking about cancer. I just had my most recent visit with the doctor and a new round of blood tests. Those little $600+ (per pill) chemo meds continue to do their job! My doctor is hopeful that these will continue to be effective for a very long time. In the event that they become ineffective (which will happen at some point)…she told me about a new drug that she things will be a good match for me. But for now, we are holding steady. So, it’s still an apple a day to keep the doctor away….plus sliding on some rubber gloves and popping a pill I can’t touch (but can swallow!) into my mouth each night.

I really want to thank those of you who continue to ask often about my health. It is reassuring to know that there are so many people out there who care about how I am doing. Thank you. I consider myself fortunate to have such a great community of support surrounding me. It makes a huge difference. (If you know others with chronic illnesses, I just want to encourage everyone to reach out to them. An email, text, phone call, invitation to coffee…..they all matter. After the crisis of a diagnosis has passed, we all tend to move on with our lives…but for those with chronic illnesses, the daily challenges remain…and knowing that others are with you for the long haul can make all the difference!) Thanks!

I have mentioned in previous blogs the value of therapy. My “maybe I’ll go just to see how it goes” experiment continues – for several months now. I highly recommend it. (Cancer is not required.) We’ve all got plenty of “stuff” in our lives. I have learned a lot and have found coping skills that make everyday life enjoyable…and minimize the anxiety. Give it a try….although I have to say that when it comes to therapy, that Lucy character in the Charlie Brown cartoon strip is a good example of false advertising….it will cost a bit more than 5 cents a visit…but well worth every penny.

Picture this:  The clinician spread the gel over my abdomen.  “This might be kind of cold,” she said.  It was.  Next she started moving the ultrasound wand over the same area….(okay…maybe you don’t want to actually picture this!)

Somehow the experience wasn’t nearly as fun as it was when Tee was on the table and we were waiting to get our first glimpse of Kelsey or Keenan. (Yah…the title was just another cheap shot to get your attention! If you’re reading this…it worked! )  This time the ultrasound was yet another cancer screening test – which turned out to be in the “all good” category, by the way!  And hey, it provided me with a catchy title for an update.

In short: Life is indeed good.  Tee and I met with my oncologist on Friday.  After another large blood “donation”…my tests all came back in the normal range!  A really good thing. As a result, I won’t have another appointment for three months…as opposed to the monthly ones I’ve been doing.  I’ll still go in for lab tests each month…but as long as the numbers stay in the normal zone….I get to skip two appointments with my oncologist! (By the way, she is an amazing physician and person….but the anxiety that builds up for each appointment is a struggle….so this is like a potential stress vacation! I know…it’s not the Caribbean, but I’ll take it. )  Oh…and she also cut back my chemo meds by 1/3.  (The only downer here is that I may not glow quite as much in the dark and we may have to get a night-light again….I know, weak joke, but I figure I’m allowed.)  So hey….still no cure for this type of cancer, but the meds are doing their job…and I’m thankful.

In my last update I mentioned that I was seeing a therapist for a “short time.”  Hey….five months later and I’m practically on the weekly plan.  This is worth a blog of its own… (we’ll see!)…but I want to mention it again in hopes that it will encourage anyone I know and love to take advantage of the great mental health opportunities that are out there.  The battles we each face – whether related to something like cancer or not……can be handled.  We don’t have to fight them alone in our heads….so don’t.

Even at a time of some good news on the personal front….I am only too aware that cancer continues to suck.  I lost a very dear friend recently to this horrible disease.  She died too soon and the world is a sadder place for it. I remember when we spent a day with her and her husband – a lifetime friend.  We talked openly about cancer, our prognosis, the stress…laughing, crying and hugging. (There may or may not have been a little wine too!)  I am so thankful for that time…and am reminded again that any chronic illness can become very lonely.  Thinking about those who are struggling is great…but the physical contact is so very important.  I will miss my friend forever…but I will also always be thankful for that day….and all the other times we shared. So….if you’ve got a friend out there who is on the struggle bus for any reason…remember the title of that beautiful Diana Ross song: Reach Out and Touch

Thanks for reading this, for asking how I’m doing, for the hugs, for supporting my family….all of it.  Writing this is harder than I ever imagined, but I like to think it’s not only cathartic for me…but that it also helps others to understand cancer from the inside…and maybe even sparks some good conversations and reminds us to act on our love for each other.

 

 

Okay….full disclosure….this blog post has almost nothing to do with crock pots.  I was just sitting here thinking about how to start this….And since I’m also still in shock about this week’s episode of “This Is Us”….all I can seem to think about is crock pots.  And there you have it.  A cheap shot title to get your attention.  (I was also hoping the title might attract millions of other fans of the show…and then I’d get enough followers to attract advertising on my blog….and then we could pay for new bathroom flooring! Yes….dreaming big here!) With my luck, it will just attract the manufacturer of crock pots and I’ll end up getting sued for defamation or something.  But, I digress…

It’s been nearly five months since I last updated this blog. (That’s about $90,000 dollars in medication ago…but hey, who’s counting!?!…and why would we need universal healthcare? ….OK, OK….no more political “sarcasm” in this post.  Just saying.

Many have asked me to provide this update and I appreciate the interest and care those requests convey.  So what’s new?

Theresa (my rock) and I went to Lacks yesterday.  Another EKG, another five gallon-ish blood deposit….and (pregnant pause here, like they use while they are ripping open envelopes on all of those awards shows)…the award for continuing progress in the lymphoma category goes to….me!  (This may be a sign that it’s time to stop watching so much television!?) Yes…it was a good appointment.  My chemo pills continue to be working.  All the numbers that are supposed to be going up are doing so and the numbers that are supposed to go down are also headed in the correct direction. (Sorry…I can never remember the technical terms here.  You’ll have to check with Tee for those.) My EKG was also normal.  In short – all good things. No…not a cure…but I’ll take remission for as long as I can get it….and I’m getting close! Hallelujah!

Some other things I’ve learned since my last posting…and in no particular order:

When your oncologist tells you to call at the first sign of illness, it’s not really a “suggestion.”  (Oh yeah and that BIG sign as you walk into the office that also says
“Call us at the first sign of illness” apparently isn’t one either.)  A couple of months ago I ate a sandwich I had purchased for lunch. (It may or may not have involved a crock pot!)  Two hours later, the signs of food poisoning were obvious.  (Trust me here.) I looked it up on Wikipedia – a reliable resource revered by all professors.  It said recovery would take 24 – 48 hours.  What could happen? I made it through the Wiki recommended 2 days.   After I stopped showing obvious “symptoms” for three more hours,  (I counted) – off to work I went. Bad plan. Within hours I was in a room at Lacks Cancer Center hooked up and getting rehydrated.  Apparently severe dehydration can occur quickly and be quite serious. Who knew? Lesson learned.

Therapy is a good thing! I always refer to Lacks as the Meijer of cancer treatment – one stop shopping.  Turns out that they even have a therapist who only works with people with cancer.  As I’ve mentioned in several of these posts, I have experienced my share of anxiety about this diagnosis.  Someone mentioned that I might want to get together with the good doctor.  So, I set up an appointment. (Okay… made up an excuse to cancel the first one and finally set up another one.)  My thinking was that it would be good to “just start a therapeutic relationship…you know, just in case I really needed one in the future!”  Funny how these things work….I walked out of that first appointment with a list of several appointments for the future….which he told me I could cancel if I didn’t “need them.”  So far I haven’t missed any. (This week’s topic may be my new found fear of crock pots!)  Seriously…therapy is good and I highly recommend it.  Cancer is tough on everyone around you…and your family and friends can provide tremendous support – but it doesn’t feel fair to count on them for everything.

Finally….I know that this post has been a bit of rambling, but that’s how I feel sometimes.  I am trying to stay healthy physically and mentally – and working hard at staying in the moment.  Today is a good day.  I appreciate your support more than I’ll ever be able to express.  And I hope we can all pass on some goodness to everyone we meet.  I think we all need as much of that as we can get and give.

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.

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.

 

 

 

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.

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.

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.