….but never really saying “goodbye.” Either way…tomorrow I begin the official period of saying “this is the last time I’ll do that.” Teach that class. Go to that meeting. Advise students. Teach a May Term….the list goes on and on. It’s official. I will be retiring at the end of this academic year! (Technically, I’ll be on a year of sabbatical next year and then officially retire….details, details…)
How do I feel? Depends on when you ask me. I think it is fair to say that I am truly beginning to understand the term “bittersweet.” In fairness, I won’t miss meetings (most), paperwork, etc….but I can hardly stand the thought of not seeing and working with Hope students and some really amazing colleagues. But I have always believed that it is important to leave something when you love it. I am following that belief…..
What will I do? Although I am retiring from a career I have loved…I am confident that I am retiring to new opportunities – travel, writing, more time with family and friends, cleaning the house (just kidding!)…..you get the idea.
Is this because of the cancer? Nope. I just had my most recent tests and those little chemo pills continue to do their job and I am feeling well. Am I perhaps hoping to capture as much of that feel good time as possible during retirement? Okay….fair enough.
As the song says….To everything there is a season. It’s apparently time for that new season to begin. (I am calling it Spring by the way. People often see retirement as Winter. How depressing! Nah…..Spring it is…..)
That’s it friends. Word has begun to seep out and I wanted to be the first to tell all of you if possible…..
So….let’s go with the Hawaiian approach: ALOHA – meaning hello and goodbye…..
So some of you will enjoy hearing about an experience I had the other day. I got to work and decided to run out to my favorite coffee shop to grab a take out cup of caffeine. (What could go wrong?) As I was walking down the street, one of my students rode by on his bike and called out my name. I turned and had a short conversation with him as he pedaled down the street. Here’s what I learned: It’s not a good idea to continue walking while you are turning to talk to someone who is behind you. Just as I turned my head forward I collided with a very large street lamp pole. While everything flew out of my hands and I may or may not have blacked out for a moment or two…I did recover fairly gracefully. And hey…no need for the $7.00 cup of coffee. I was wide awake. (By the way…this is not why I titled this post “Reach Out and Touch.” More on that later.)
So, time for an update. Last Thursday I met with my oncologist. We discovered that it was the 2 year anniversary of taking my daily oral chemo meds. (No cake or champagne was consumed.) The good news is that my blood tests and a check of my lymph nodes show that the meds are still doing their job. Yes! I continue to feel good and am fortunate to experience almost no side effects. (Oh…and among the many comforting neon warnings on my pill dispenser, with “toxic” and “biohazard” being constants….this month they added “Do not handle if you are pregnant or planning to become pregnant.” Whew….dodged that bullet!)
Although this is my 2 year medication anniversary, it’s been nearly 3 1/2 years since I was diagnosed. So many ups and downs – even without a light pole in my path! I know that I have written about this before, but for a variety of reasons this has been on my mind a lot lately – the importance of staying connected and supportive of people who have experienced something traumatic – a death, a diagnosis of a chronic illness, mental health struggles, etc. When the initial trauma occurs, many of us are surrounded by supportive friends and family. However, as time goes by…people move on with their lives – even if the effects of the trauma have not. I’ve been really fortunate. I have many people in my life who consistently show their support. Maybe that’s partially a result of writing this blog. I try to let people know what they can do and say that will be helpful – things I too am learning along the way. I realize that it is hard to know how to be helpful.
So, if you haven’t yet clicked on Diana Ross’ classic version of “Reach Out and Touch,” I want to urge you to do so and listen carefully to the words. It’s a beautiful song…and a wonderful reminder that life does not “move on” for many people and we all benefit when we continue to show our love and support. Trauma and grief don’t have an expiration date. So, call a friend. Send a text to let them know you love them. Ask someone to join you for coffee and don’t expect them to be cheery. Indeed, don’t hold them to any expectations at all. As Diana Ross sings:
I try and often fail. I tell myself that life gets busy…and it does. And then I think about how thankful I am to all of you who ask how I am doing and really listen to my answer. Thank you. I hope we can all take the time to reach out and touch. It matters……..
Do the best you can until you know better. Then when you know better, do better.” Maya Angelou
Okay, okay….if you are one of my UK friends….you know this picture isn’t actually from Liverpool. But here’s the thing…I don’t take very many pictures and this is one of the few “scenic” types I have from the UK – so close enough. (The other one I was going to use was from a beautiful cemetery…but then I looked at the title I had just written and thought that it might send the wrong message about what I mean by “Farewell Tour.”
Background Story: Back in 1998 (geez….) I started a May Term in Liverpool, England with a colleague. Our students took a Hope class in Liverpool and did their clinical experiences in a local school. Over the years, we added a component in which students from Liverpool Hope University would come to Hope College and I would work with them…and then they would be placed in Holland area schools.
Fast forward: On Saturday I depart for Liverpool for my final year of working with Hope College students there. It will be a bittersweet time. I have come to think of Liverpool as a second home – with many wonderful memories and some incredible friends. My nearly annual visits have been a highlight of many years. But…I also want this program to continue, so it’s time to get some of the younger faculty to take ownership of the program and to step away. And so it begins….the final year. (I’ll surely be posting updates on Facebook. As I type, I am nearly certain the infamous urban foxes that populate this lovely area are plotting ways to stalk me in the dark – always an “exciting” wet my pants moment.)
Just returned from a May term on the Rosebud Reservation in Mission, South Dakota. It was a GREAT trip with a wonderful group of students and my Hope bud/colleague Susan Cherup. (There the wildlife adventures were restricted to buffalo crossing the street in front of us…and some rather large snakes. Both are best viewed from a distance! Actually, the most dangerous part of that trip was playing “spoons” with the Hope students on a few occasions. We are talking vicious rip the spoon out of your hand and throw yourself on top of the table to get a spoon games. I often had to remind them that nearly injuring your professor for a spoon was hardly appropriate. They didn’t seem to give a shit. Surprise.)
A quick health update: Tee and I met with my oncologist on Tuesday. All continues to be stable – news I am always relieved to get! (Despite my disdain for using cliches, “Life is good.”)
So…time to finish packing. Just wanted to do a quick update in response to some kind requests for the latest…..
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.
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.
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.
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…..??)
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.