Closer to Normal

This week I jogged for the first time since last August.  It was sort of like jogging.  I am not the man I used to be, but I am making a comeback.  On Thursday evening, I alternated two minutes of walking with one minute of jogging for two miles.  That might have been too ambitious, so I took Friday off and took it easier on Saturday.  On Saturday morning, I alternated three minutes of walking with one minute of jogging for about one and a half miles, until it started raining. 

Times have changed.  Last June, I completed the Indialantic Triathlon.  Gina and I jogged about thirty miles each week last summer, until back pain sidelined me in August.  I was diagnosed with multiple myeloma in September, and I had a bone marrow transplant in April after two rounds of chemo (September – December and January – March).  This week I was excited to slowly jog twelve minutes on Thursday and eight minutes on Saturday.

My follow up appointment on Thursday was my fifth since being released from the hospital.  Each time a nurse takes blood, then I have to wait an hour or two for the results to see if I need a blood transfusion, or more platelets or potassium or something.  So far, I have not needed to have any additional treatment after the blood tests, and my appointments are becoming less frequent.  My next appointment is nineteen days after my last appointment.  

The other routine of my follow up appointments is the question and answer session with the physician’s assistant.  We actually have two question and answer sessions.  She asks me questions about how I am feeling, and I ask her questions about my restrictions.  I take a list of questions to each appointment, and the answers seem to get better each time.  At my fourth appointment, I asked if I would be able to travel to SC in July, and she answered that I could go at the end of June, after Day 60 (since the transplant). 

On Thursday, I had a few more questions for the physician’s assistant.  I was pleased to discover that my appetite returned almost as soon as I got home from Orlando, but when I started caring about food again, I missed black pepper.  I know that seems petty considering the other things I have been dealing with, and I do not want to be stubborn about following directions, but I was nostalgic for pepper.  I asked why that was a restriction, and when I could start seasoning my food with pepper again.  I was delighted to learn that I can already drop that restriction.  I lost about thirty pounds during my time in Orlando, and I have gained back a few pounds since returning home.  The physician’s assistant said that it was important for me to stop losing weight, but there is no obligation for me to regain the weight I lost.  I do not eat that much, but my ability to exercise has been limited.  I am not allowed to ride a bicycle this summer, and I have been restricted from jogging and lifting weights since September.  I have been able to walk and ride a stationary bike, but those are not as intense as jogging.  So I was very pleased to learn that I can resume jogging, even though the jogging I do now is not nearly as robust as the jogging I did last summer.

Since we returned home, Sundays have been the strangest days.  It feels very odd to wake up and watch Gina get ready for church while I sit around in gym shorts watching “Meet the Press.”  I am very excited to return to church on June 11th, and I expect to be back in the pulpit all summer.  After two months off, I am ready to be useful again. 

Home!

Last night, I slept at home in my own bed for the first time since Easter Sunday.  The week after Easter, I was admitted to the hospital for a Bone Marrow Transplant.  After eighteen days in the hospital, we spent a week and a half at the Bartch Transplant House.  After my release from the hospital, I had three appointments at the BMT clinic, and my blood tests were good enough that I did not require any transfusions or additional treatment.  Yesterday, I went to the hospital to have my trifusion line removed.  That is a very exciting development for me.  I’m looking forward to taking a normal shower again this week. 

I wrote my last blog a few days after I was admitted to the hospital, just before the actual bone marrow transplant.  It was overly cheerful about my time in the hospital.  The first few days were easy, and the procedure itself was no big deal.  On Wednesday, April 19th, I had a chemo blast that wiped out my immune system, and eventually caused me to lose what was left of my hair, but the side effects did not start right away.  Two days later, on Friday, I had the actual bone marrow transplant.  Just like the chemo on Wednesday, I just sat in bed while they pumped stuff into me through the trifusion line.  On Wednesday it was chemo, and on Friday it was my stem cells that they had harvested two weeks before. 

Saturday was when the side effects started.  For the next ten days, I experienced a variety of flu-like symptoms.  Fatigue was my favorite symptom.  I tried my best to sleep as much as possible during those days.  Nausea was my least favorite symptom.  So far, I have lost twenty-five pounds since the BMT, and I am still trying to rediscover my appetite.  During my time in the hospital, the nurses told me that it was important for me to eat and walk, but I did not feel like doing either.  Before this treatment, it would have been difficult for me to imagine meal time as a chore that I had to endure.  Gradually, I discovered foods that I could tolerate, and I was able to discontinue the anti-nausea medication by the time I left the hospital.

I continued to improve during my time at the Bartch House.  Most days I was able to walk two and a half miles and eat three decent meals.  My returning appetite defies logic.  So far, I am not able to tolerate coffee or tea, but I enjoy Mexican food with salsa.  My favorite meal is breakfast, either cereal or raisin toast, and some days that’s a good lunch also.

Gina and I were both very impressed with the care I received at Florida Hospital.  The entire team on the Bone Marrow Transplant unit combined competence with compassion.  We were also surprised by the Bartch House.  We expected that we would find safer, more affordable housing, and we found exactly that before, during and after my hospitalization.  We did not expect to form friendships and find a community there, but we did.  The staff at the Bartch House are amazing ministers guided by our common faith, and we commiserated with the fellow travelers there. 

It has been twenty-five days since my transplant, and, because of my wiped out immune system, I will have several restrictions for one hundred days.  Exercise is good, but I cannot ride a bicycle this summer.  I’m not allowed to eat at restaurants or order carryout, and fresh vegetables and fruit are okay only if we cook them.  I think I’ll be allowed to drive again in a few weeks.  I am supposed to limit my exposure to the public and our cats, so I will spend most days on a recliner in my bedroom, but I will have a laptop and plenty of books and DVR and Netflix.  I’m planning to return and deliver the Sunday sermon at church on June 11th.  I’m excited about being back in the pulpit, but to appease my doctor I will have to arrive at church late and leave early for most of the summer.

Making the Best of Hospital Life

Gina and I moved into the Bartch Transplant House, on campus at Florida Hospital, on April 3rd.  Gina and I stayed there together before I was admitted to the hospital.  Now Gina is back and forth between my hospital room and the Bartch House, and we will both stay there together again for two weeks after I am released from the hospital.  I had 11 days of tests and pre-transplant procedures between April 3rd and April 13th.  I will be a patient in the Bone Marrow Transplant unit of Florida Hospital for about two weeks, and then I will need to stay close to the hospital for follow up for the first two weeks after I am released. 

The Bartch House has been a blessing.  We anticipated that it would be a safer, more affordable, more convenient alternative to a hotel, and it is all those things.  We were surprised by the sweet community of staff and neighbors. 

There was a break in the action that allowed us to come home for Easter weekend.  We returned home Thursday evening, April 13th.  We attended a memorial luncheon on Saturday and church on Easter Sunday.  On Monday, I did something new.  I met Rick at church to record a sermon for broadcast later, and we also recorded Bible readings to show on three of the Sundays that I will miss church.  On Monday evening, April 17th, we returned to the Bartch House to settle in for the week.

I was admitted to Florida Hospital’s Bone Marrow Transplant unit on Tuesday, April 18th.  Tuesday was mostly for learning the routine here.  Wednesday was the day of my chemo blast.  Thursday (today as I am writing this) is a day of rest.  Friday is what they call “Day Zero,” the day they start infusing me with my stem cells that were collected last week.  I feel pretty good now, but they tell me that I am likely to experience flu-like symptoms next week.  After about a week, my re-infused stem cells will learn to get along with my wiped out immune system, and I will begin my comeback. 

These are my favorite things about life in the hospital so far:

1.        They have given me assignments.  I am supposed to walk and exercise every day whether I feel like it or not.  Although this might seem like a burden, I see it as a rare opportunity to contribute to my own recovery as part of the team rather than victim of the disease.  I know this is geeky, but I calculated that seven laps around the BMT unit is one mile.  Taking inspiration from Bart, my SC friend who walked this path a few years back, I intend to walk a marathon’s worth of miles before I am released. 

2.       The staff here is incredible, combining the competence that we expected with a surprising level of compassion.

3.       Since I am not allowed to go do stuff, Gina and I have more time to just be together and entertain ourselves.  We are halfway through season 2 of “Better Call Saul” on Netflix.  I am listening to an audiobook – Cain at Gettysburg by Ralph Peters – when I walk the hall alone.  I am reading The Man in the High Castle on Kindle when it’s dark in the room and I don’t want to disturb Gina.  And I am reading two actual books:  Too Busy Not to Pray by Bill Hybels and The Name of the Wind by Patrick Rothfuss.  I love to read, but I don’t time for this much indulgence during my regular life.

4.       On Easter Sunday, Samantha presented us with a box of envelopes marked “Agape for Curt.”  Each envelope is labeled with a number, counting down from sixty, and a Bible verse.  Inside each envelope is some form of creative blessing from a family in the church.  I have been like a kid at Christmas, waking up early and opening the envelope before Gina wakes up.  Later, Gina looks up the verse and reads it aloud to me.  I’ve made a guessing game of that part, trying to guess the verse from the reference before she reads it.  We are still in the first week, and we have already received an incredible variety of gifts that have combined generosity, creativity and humor.  So far, we have received original art, a haiku anthology, a Top 10 list and “Pastor Curt’s Feel Better Book!” (It worked).

It’s Happening Now

Last Tuesday we drove to Orlando to meet with my transplant specialist and our nurse coordinator, and we learned a lot about my upcoming schedule:

My transplant officially starts on April 21st, but I have some kind of pre-transplant test or procedure in Orlando every day from 4/3 to 4/14.  Gina and I are going to stay in Orlando during that time to avoid driving back and forth every day.   I'll get a break from that so that I can be at home and church over Easter weekend, but then I'll be admitted to the hospital on Tuesday, 4/18.  I'll be an inpatient at Florida Hospital for two weeks, then I'll be released from the hospital but staying in Orlando for the next two weeks (either at the Circle of Friends house on campus at the hospital or the Comfort Suites across the street).  I'll be returning home in mid-May, but I will be restricted from mixing  with other people for a month or two after that. 

This week is busy because I am trying to wrap things up at school and church before I go away.  I’ll be plugged in electronically for most of my time in Orlando, but this Friday will be last day on campus at school this year. 

I have been referring to our pre-transplant time in Orlando as a vacation.  Gina says that I’m the only one she knows who would call it that, but those two weeks will not be too difficult.  We have something to do each day at the hospital or doctor’s office, but I will not be restricted otherwise, so we will have some time to enjoy Orlando since we are not going to spend hours each day commuting.

Although it will be a definite change in lifestyle for me, I have chosen to embrace my post-transplant time as a monastic-style retreat.  Rather than becoming frustrated over my restrictions, I am choosing to celebrate the enforced opportunity for more prayer and study.

This is my favorite line from Tuesday's meeting:  Dr. Ahmed said that he expects me to be 95% recovered by the end of the summer.  I used to be a pretty productive guy, so I'd be happy with 95%.  I am excited about making my comeback at school and church.  I am officiating a wedding on June 11th, and I expect to start easing back into church by the end of June.  I am planning to return to school in August to teach two AP courses, but my teaching schedule will be lighter next year.

I have some serious stuff coming, but my long-term prognosis is good.  My doctors are optimistic, and I am also.  I know that the readers of this blog have been praying for me and my family, and we are grateful.

Lucky Man

Disclaimer:  I don’t really believe in luck.  I believe in God’s providence.  I believe in sowing and reaping, but sometimes I’ll use the word “karma” because it easily expresses much the same idea without sounding so religious.  I’ve often said, “I’m a lucky man” while describing my marriage to Gina, but I don’t really believe it was luck.  I believe that God was merciful to me and/or answered my parents’ prayers.

No one would look at my life over the last fifteen months and nickname me “Lucky.”  I am not articulate enough to describe the journey of horror and sadness we have endured since Allison’s death.  In contrast, cancer treatment is relatively easy in the sense that my part is just to follow directions.

Yet I have a lot to celebrate, many reasons to be thankful.  We have been hit hard with bad news twice in a little over a year, and both times we have felt surrounded by the love of God mostly through the compassion of his people who are also our people.   It helps that we have people who care about us in many places.  I have known people who have trouble finding one job that they like, but I have enjoyed two concurrent careers that are bring me much joy and satisfaction. 

My family is a delight to me.  This spring Gina and I will celebrate 35 years of marriage.  She makes the hard times easier to bear, and she makes the good times soar.  My mom has lived with us since the fall of last year, and she adds joy and care and sardonic wit to our home.  It is hard to believe that our son Andrew turned 29 in December.  When I think of him I remember the father and son battlefield scene at the end of “Braveheart.”  When my time comes, I will die happy because I have seen the man my son has become.  Although Andrew and Rachel are not yet married, we feel as if she has been a welcome addition to our family for years. 

As I have become weaker, the strength of the teams at my workplaces has been more valuable than ever.  At school, I feel supported by our administration and the students and their parents.  I know that they pray for me and are truly concerned about my condition.  My reduced schedule is manageable, and it allows me to feel useful without jeopardizing my treatment and recovery.

Walter Straub is my beloved brother in ministry.  Walter and Anne were generous and welcoming to Gina and me for years at our last church before we planted Melbourne Community Church in 2002.  Since then we have enjoyed a joyful partnership pastoring this congregation.  I hear friends in ministry at other places describing the challenges of their roles, and I realize that most of my “staff meetings” over the last 14 years have been fun and easy double-dates.  In 2015, we added two younger couples to our pastoral staff team, and that addition seems to have been perfectly timed.  Jared and Sarah and Nathan and Heather are devoted to their church, and they all work sacrificially yet cheerfully to help us all respond to God’s call.  We also have dedicated ministry leaders, too many to name here, who use their gifts and talents to advance our mission.  God has blessed our undertaking, and it feels to me like our church is in good hands even as my involvement has waned.  I expect to make a pretty full comeback by the end of the summer, but some of that is out of my hands.  I will celebrate God’s goodness to me come what may.

Not So Fast

This is blog #6 in a series.

 

I met my local oncologist, Dr. James Neel, on my first morning in the hospital back in September.  He told me then that he was 95% sure I had multiple myeloma and he described the treatment.  I would go through three months of chemotherapy from the end of September until the beginning of December, then in January I would have a bone marrow transplant.  The chemo was handled through Dr. Neel’s office at the Cancer Center in Melbourne, but he referred me to Dr. Ahmed at Florida Hospital in Orlando for the transplant.  Gina and I have visited his office twice to meet with Dr. Ahmed and his team to learn about the procedure.  The preparations are extensive, and it sounds like the recovery will take several months.  Dr. Ahmed said that most of his patients are able to go back to work after two months, but that even then it would be a good idea to avoid public settings like movie theaters and church. 

The nurse coordinator at Dr. Ahmed’s office sent me a detailed schedule that included five diagnostic tests the week before Christmas, stem cell collection the first weekend in January, and admission to the hospital for the transplant at the end of January.  The usual timetable includes 10-14 days inpatient, then two more weeks staying in Orlando near the hospital to make it easy for me to return for tests (or in case of complications), then one month of lockdown at home before I am allowed to return to public interaction.  I’ll be like the boy in the bubble.  Gina has been busy turning our bedroom into a clean room, and the cats will be banished from the bedroom when I return home after the transplant. 

I made plans at school and church to have my positions covered while I was out of commission.  Because my last chemo ended in early December, I have been stronger every week since then.  I have been more energetic and productive over the holidays, and I was looking forward to a productive January before admission to the hospital.

During the week before Christmas, Gina and I spent two nights in Orlando in order for me to undergo five tests at the Florida Hospital.  Most of these were new tests for me:  a pulmonary function test, echocardiogram, electrocardiogram, and a PET scan.  I also had my second bone marrow biopsy.  This one was done outpatient under local anesthesia, and it was my least favorite thing so far.  My first bone marrow biopsy was done during my first hospitalization under general anesthesia, so it felt like turning back the clock to have it done outpatient.  According to Dr. Ahmed, we would need to know the results of these tests before I could give informed consent for the transplant, so we were scheduled to meet on the first Tuesday in January for me to sign the forms and confirm the treatment schedule.

Dr. Ahmed called me the morning of our scheduled appointment and told me not to come.  He said that the most recent bone marrow biopsy showed that my chemo had been effective, but not effective enough.  Therefore he was recommending two more months of chemo with a different formula before rescheduling the transplant.  The new timetable will push my transplant out about nine weeks, depending on the results of the next round of tests.  I’ll write more about that in my next blog.  I am disappointed in the change in schedule because I was eager to get it over with and get on with my recovery, but I am trusting God to work through my doctors to provide me the best treatment.  

 

The Other Shoe

This is post #5 in a series.

I wonder if anyone who has really suffered with cancer read any of my early blog posts and found them to be annoying.  When I read them now, I’m frustrated and a little embarrassed at my naïve optimism.  I’ve learned a lot since September, and one of the things I have learned is that the side effects of chemo build up and hit harder at the end.  During my first two rounds of chemo, I was surprised at how easy it was and how much energy I had.  The positive effects of the medication outweighed the negative effects of the cancer and the chemo.  However, starting with round 3 of my chemo in early November, I learned new depths of fatigue and I experienced a rotation of side effects that sent me to the emergency room twice in a month. 

For about six weeks, starting in early November, I slept about fifteen hours a day.  I had to drop back to only two (of six) classes at school, and some days I could barely handle those.  Since we had a special series and a children’s program at church, I only needed to prepare and deliver one sermon in December, but I had a couple of rough Sundays in November.  I haven’t watched the video recordings of those messages, but I imagine that they are alarming.  Gina and I took two road trips in November – one to Tallahassee for the cross-country state championship race, and one to St. Augustine to visit Andrew and Rachel.  Road trips used to be fun and easy for us, but I am not as useful as I used to be.

Now it’s Christmas Eve, and I’m three weeks past my last chemo.  I feel like I’m getting stronger every day, and it’s more noticeable from one week to the next.  I will have a few more productive weeks before my bone marrow transplant at the end of January, then I will be out of commission for about two months.  My next blog will include details about that procedure and my expected timetable for recovery.

My symptoms and side effects have ranged from merely curious to alarming and disabling.  I’ll try to list them here in chronological order:  back pain (that was the first sign that anything was wrong with me), cracked and bleeding hands and fingers, nerve cramps in my hands (I call this one “the claw”), fever (ER visit #1), itchy rash, swollen feet and ankles and face (my least favorite side effect), persistent cough coupled with sharp side pain (ER visit #2 because I thought I cracked a rib), “chemo fog,” sore legs and numb, tingly feet.

“Chemo fog” is a curious thing that bears further explanation.  I am not as clever as I used to be, and that is even more of a problem because I am sometimes more stubborn than I used to be, and that is not a good combination.  It also includes a curious disassociation from reality.  I will wake up in the morning, and in my mind’s eye I am watching a show (or reading a story) about a boy who needs to get out of bed and get ready for work.  It takes a while for it to dawn upon me that I am that boy, and I really do need to get up and get ready. 

Still, it could be worse.  I am not in serious pain, and I have only experienced nausea one day.  Fatigue really is not so bad after I learned to adjust expectations and clear out my schedule for extreme napping.  It made me take a two-month break from blog #4 to blog #5, but now I should be able to post a few more before my transplant at the end of January.

A More Effective Pastor and Teacher?

This is Post #4 in a series.

It seems counter-intuitive, but I believe that I have been a more effective pastor and teacher since the diagnosis.  I was pretty miserable the last few weeks before my hospitalization when it felt like my body was breaking down and I didn’t know why, so it is obvious that any improvement in my condition would help there, but I believe it is bigger than that.  I believe that over the last month I’ve improved in both of my positions compared to when I was at full strength.  How did that happen? 

The short answer is that I have made lifestyle adjustments to clear space in my schedule in case the treatments and side effects leave me unable to perform at previous levels.  Since the treatments have been effective and the side effects quite tolerable, the net result is that I am focused on fewer responsibilities, but I have more time and energy to devote to them.

As it dawned on me that my illness was serious, but before I received the good news about how treatable my condition is, I had a little time to wonder, “Is this it?  And what if it is?”  I decided then that if my window was closing, I would want to make some adjustments.    What roles are important to me?  What are my priorities?  Who am I? 

For Christians, our big-picture answers should all have a similar flavor.  I am a disciple of Jesus.  I am part of a family filling the roles of husband, father, son, brother and more.   After that, I am defined by my calling.  I have been blessed with two different but highly complementary careers.  I have been a high school (mostly history) teacher for 28 years, and I have been the teaching pastor of Melbourne Community Church since its founding 14 years ago. Many people have trouble finding one job they can tolerate, but I feel particularly blessed to have found two vocations that bring me great joy and help me feel useful.

When I was still unsure about how serious my illness Tat things can and will change especially if there is an illness, but I am still a long way from being a person who could tolerate an inactive lifestyle.  My oncologist told me to listen to my body.  I believe that means that when I feel tired I should take a nap. I am not allowed to jog or lift weights, but I can walk, bike, swim or work out on low impact machines at the gym.

Over the last few months I learned that sometimes my body cannot be trusted to cooperate or to be as strong as it used to be.  So I’m working ahead at school and church, attacking deadlines early in case I don’t feel like it later.  Since I’ve been feeling good before and after the nap, I have had time for some household projects, and I have taken over many of the kitchen duties at home.  I was prepared to go the other way with the kitchen, but so far my new sleep schedule has added time to my daily routine rather than subtract.

Fatigue is my strongest side effect, and it is my favorite.  I don’t really sleep more, rather I sleep more often.  I take two or three short “naps” overnight, and one or two or three every day.  The biggest difference for me is that when the fatigue hits, it hits hard.  It is time to switch drivers and/or take a break from what I am doing because I need a nap and that nap needs to happen soon. That has not been a difficult adjustment, and the net plus in energy and time has allowed me to upgrade my performance at both of my positions.  So I can sincerely thank God for the way he has used my cancer diagnosis and treatment to make me a more effective teacher and pastor.

Diagnosis, Prognosis and Treatment

This post is #3 in a series:

I met Dr. James Neel on Saturday morning, September 17th, after my first night in the hospital.  Dr. Wahl told me Friday night that the on-duty oncologist/hematologist would see -me at Holmes over the weekend.  Gina spent the night in my room, sleeping in a recliner, and she went home to shower and change soon after waking.  So she missed most of my morning doctor visits with Dr. Neel and Dr. Wahl over the next few days, and she had to depend on my layman’s attempt to explain the things they told me.  Knowing that Gina would want to know as much as possible heightened my focus during those visits because I knew that I would need to replay the meetings for her.

Dr. Neel impressed me immediately as a competent, compassionate professional.  When my dad was battling cancer, he told me that he sometimes felt like he was a secondary player in the battle between the doctors and the disease, but that has not been my experience.   I have consistently felt that my doctors and all of the hospital staff who attended me that weekend were committed to taking the best possible care of me. 

Dr. Neel started with the diagnosis:  “Mr. Deming, I’m 95% sure that you have multiple myeloma.”  He went on to explain that final confirmation would follow a bone marrow biopsy on Monday, but that he was so sure of the diagnosis he wanted to begin preliminary treatment right away. He then taught me all about multiple myeloma, and the news was not nearly as bad as I expected.

Multiple myeloma is a blood cancer that attacks the bones.  It is not curable, but it is highly responsive to treatment.  Because the field is advancing rapidly, internet sources that discuss this disease are out of date and more pessimistic than the current reality.  Four new treatments have been implemented just in the last year, and they are working.  Dr. Neel told me that he has been treating some patients with this diagnosis for over ten years.  He also told me that he had already reviewed the reports from my blood test in January and my colonoscopy in March, and I was fine then.   It is good news that we caught this early and that I am relatively young (for this diagnosis) and in decent shape (for a 55-year-old).  I lost fifty pounds last year because I was trying to avoid diabetes (also deadly), and it turns out that my weight loss was good preparation for the battle ahead.  Although multiple myeloma is technically not curable, patients are responding to treatment so well for so long that it is way too early to consider this my terminal illness.

The chemo is easier for this than for many other cancers.  It is all outpatient, two shots and a pill.  I go into the cancer center twice a week for the shots, and I take the pill at home.  The side effects are minimal, no nausea or hair loss.  The most common side effect is fatigue, so I need to allow space in my life for a nap or two every day, and I have not minded that at all.  Chemo vs. cancer is a battle of poisons, and my body is the battlefield, so I take several other prescriptions to prepare or repair the battlefield.  One of those is a steroid, and I’ve found that I’m more likely to feel jacked up from the steroids than fatigued from the chemo.  My back is still sore, but my energy level has been high. 

The chemo schedule is two weeks on, one week off, for three months.  Then after the first of the year, I will go to Moffitt in Tampa for a bone marrow transplant.  According to Dr. Neel, this is “no big deal,” not like it used to be.  There is no need for a donor because they will remove my own bone marrow, clean it up or something, and then put it back in.  It is an inpatient procedure because they will want to watch me for a few days to see how I respond.  After that, more tests to see how effective the first round of treatment was.

I have just finished week three of the chemo schedule, my off week, and I’m surprised at how good I feel.   Last Friday, I met with Dr. Neel and told me that my blood tests were already showing improvement.  I am impressed with the everyday miracles of modern medicine, but I also know that many people are praying for me, and I am sure that it is helping. 

Next blog:  How cancer has helped me become a better pastor and teacher

My Weekend at the Hospital

Curt Deming
This post is #2 in a series

My last blog, “How Did I Get Here?” ended with Gina taking me to the hospital on Friday, September 16th.  After work that day, Gina was alarmed at my decline, so she called my doctor’s office and convinced them and me that I needed to go to the hospital.  I’m glad I listened to her then.  I should have listened to her sooner.  She was the first to suggest that my back pain might be more than back pain, and that was two or three weeks earlier.

I have not been hospitalized since my tonsillectomy when I was a child, and I am typically not eager to seek a medical treatment, but I was surprised and confused by my lack of improvement over the past month.  Almost immediately, I felt a sense of relief that help was coming.  We arrived at Holmes Regional Medical Center ER late in the afternoon.  I spent a few hours there before I was admitted to the hospital Friday evening.  I stayed through the weekend, and I was released around lunchtime on Tuesday, 9/20.  Gina and I both felt like we received consistently excellent, compassionate care from all of the professionals we met that weekend.

I’m not sure how my friend, Dr. Kurt Hensel, knew that I was in the ER, but he stopped by the ER waiting room and prayed with us even before we got to a room in the ER.  My primary care physician, Dr. William Wahl, was on call at Holmes that weekend, so he met with us in the ER room to discuss options for the weekend.  He suspected some type of blood cancer, but the concluding tests would probably not be available until Monday.  We opted for admission to the hospital for the weekend so that testing and some treatment could begin.

By the time I was admitted to a room, it was past dinner time.  My room was crowded with visitors, Gina and my mom, friends from church and school.  My first night in the hospital ended with a carryout sushi party from Siam Orchid.

My hospital days started at 4:00 AM with a phlebotomist drawing several vials of blood.  Gina spent every night at the hospital with me, sleeping in the recliner in the corner room.  Her routine was to wake up early and go home to shower and change, returning by mid-morning.  The doctors, both Dr. Wahl and my oncologist would stop by early morning every day I was there, so Gina missed several of those meetings, and I had to relay the details to her later.

I met Dr. James Neel, the oncologist/hematologist on duty that weekend, on Saturday morning, 9/17, and I was impressed from the beginning.  He told me that his diagnosis would not be confirmed until after the bone marrow biopsy on Monday, but that he was convinced that I had multiple myeloma.  After the shock of the diagnosis, he had some very hopeful news about my prognosis, the course of treatment and the likely side effects.  That conversation will be the subject of my next blog.

WARNING:  If you google “multiple myeloma,” you will find information that is accurate as to symptoms, but out of date as to prognosis.  This is a rapidly advancing field of study, and the outlook is much more hopeful today.  Nowadays, this is a considered a type of cancer that is very responsive to treatment.

I had a steady flow of visitors on Saturday, and at some point in the day I developed a fever and I had trouble staying awake during visits.  That was probably my low point, and I think the sight of me must have been alarming.  On Sunday, Walter was not sure it was a good idea for the congregation to come visit, but I woke up early Sunday feeling much better, and welcomed several visitors Sunday afternoon and evening.

Monday’s highlight was a bone marrow biopsy, the test that ultimately confirmed Dr. Neel’s diagnosis.  Tuesday’s highlight was my first chemo treatment, a shot administered by two nurses in HAZMAT gear.  The chemo treatments are a form of targeted poison, designed to attack the cancer, but chemo is toxic to others so it is administered carefully to protect the nurses and anyone else who might be around.   I was released from the hospital just after lunch on Tuesday, 9/20.

 

Next blog:  My diagnosis / prognosis / treatment  

How Did I Get Here?

Curt Deming, Teaching Pastor

I’ve been saying it was a month ago, but by now it has been almost six weeks since I first noticed.  It was Wednesday, August 10th, and I thought it was a sports injury from overuse. 

Gina and I had a very busy, active summer, full of travel and exercise.  I was proud to be jogging over 25 miles a week most weeks, and over 30 miles per week a few times.  Gina and I would usually try to jog in the morning, then we would do something easier (like walk or bike) in the afternoon or evening.  When summer ended and we started back to school and cross-country team practice, I was determined not to lose any momentum.  Most days, I would get up early and jog a mile or two before practice and then run with the cross-country team during their practices (not exactly “with” the team; they are much faster than I am). 

Last spring, while baseball season was still going on, Jared and I started a meet-up routine on Wednesday evenings.  Gina and I liked to catch a ride to Wednesday evening Bible study with my mom, so we could jog home from church when it was over.  Jared started meeting us along the way so we could talk and hang out before and after the jog home.  We took a break during the summer, but I was glad to resume on August 10th.  Because I knew what I was planning, I think I only jogged three miles with the cross-country team that morning.  I was thinking that the additional five miles home from church would not be too much, but I was wrong. 

I almost always sprinkle my jogging with liberal walk breaks, usually at a pace of jogging five minutes, then walking one minute.  I found that I could continue at that pace for over an hour without any problem, and that increased mileage was helping me reach my fitness and weight loss goals.  On the evening of August 10th, it just seemed much harder.  I needed more frequent breaks, and it felt like I was going much slower overall.  I concluded that two-a-day practices are a good idea for elite high school athletes, not so much for middle-aged men.  I just considered it a failed experiment and determined to jog only once per day after that. 

For the next two weeks, I kept jogging, but at a much slower pace, and I was never fast even before.  It was a bit embarrassing to be going so slow, but I found that my scale did not seem to care how many miles I covered as long as I exercised for an hour in the morning.  The pain intensified though, and I stopped jogging around the end of August.  I still walked and rode my bike during cross-country practice and in the afternoons, and I decided that maybe I just needed to take a short break from jogging. 

When the pain continued to intensify, that is when I became concerned.  Early on, Gina asked if my back pain might be a sign of something internal, but I dismissed the idea because I was pretty sure I knew the cause.  Then I began to notice other symptoms that did point to an internal issue.  Early in the morning of Tuesday, September 13th I was up googling my symptoms like a cyberchondriac, and one of the medical sites recommended that I make an appointment to see my doctor because of possible kidney problems.  I managed to get an appointment to see my regular doctor later that afternoon.

My doctor listened and looked me over, then he ordered x-rays, urinalysis and blood tests.  He called me on Thursday to say that the tests indicated some type of problem with my blood, and he wanted to refer me to a hematologist.  The next day was Friday, September 16th.  I worked a full day, and after school Gina insisted that I go to the emergency room because my symptoms were alarming to her.  

Be Careful Little Eyes

As we continue our study of Jesus with The Sermon on the Mount, it is clear that God’s standards far exceed the law that was given by Moses and guarded by the Pharisees, and the law by which we are governed today.  It is not enough not to kill, we must also not hold any anger against our brother.   As I read through Matthew 5-7 this week, I struggled with some of the commands.  Some are easy to follow and some are not.  Loving your enemy is something to which we know we are called, but truly obeying that command is difficult for even the most mature of believers.   How do we “Be perfect, therefore, as your heavenly Father is perfect”? 

 My daughter received a copy of Bible songs for kids for her birthday, and I have been surprised and blessed at the way that the simple truths in some of the songs have spoken to me.   The one song that keeps popping in my head as I read through Matthew is “Be Careful Little Eyes What You See”. Each verse is so simple, but when put into practice can make all the difference when it comes to loving your enemies, giving up your worries, passing judgement, or watching for false prophets.  Here are the lyrics.

O be careful little eyes what you see,
O be careful little eyes what you see,
For the Father up above is looking down in love
So be careful little eyes what you see.

(v2) O be careful little ears what you hear
(v3) O be careful little tongue what you say
(v4) O be careful little hands what you do
(v5) O be careful little feet where you go
(v6) O be careful little mouth what you say
(v7) O be careful little heart whom you trust
(v8) O be careful little mind what you think

As I read these Scripture verses I couldn’t help but sing the song.

But I tell you that anyone who looks at a woman lustfully has already committed adultery with her in his heart. (Matt. 5:28) O be careful little eyes what you see.

But I tell you, do not swear an oath at all: either by heaven, for it is God’s throne; or by the earth, for it is his footstool; or by Jerusalem, for it is the city of the Great King. (Matt. 5:34-35) O be careful little mouth what you say.

So when you give to the needy, do not announce it with trumpets, as the hypocrites do in the synagogues and on the streets, to be honored by others. Truly I tell you, they have received their reward in full. But when you give to the needy, do not let your left hand know what your right hand is doing, so that your giving may be in secret. (Matt 6:2-4) O be careful little hands what you do.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. (Matt. 6:24) Oh be careful little mind what you think.

Watch out for false prophets. They come to you in sheep’s clothing, but inwardly they are ferocious wolves. (Matt. 7:15) O be careful little heart whom you trust.

The answer to “How do we become perfect?” is not a straightforward one (other than the redemptive work of Christ on the cross), but I think it is a step in the right direction if we are careful what we see, do, say, and think. Do the things we say and do show Christ to those around us?  Do our actions show Christ to our children as we sing this song?

-Sarah Smith

The Mountain and the Sheet

In preparing last Sunday's message I returned to this passage in Isaiah 25 about the mountain of the Lord:

On this mountain the Lord Almighty will prepare
    a feast of rich food for all peoples,
a banquet of aged wine—
    the best of meats and the finest of wines.
 On this mountain he will destroy
    the shroud that enfolds all peoples,
the sheet that covers all nations;
    he will swallow up death forever.
The Sovereign Lord will wipe away the tears
    from all faces;
he will remove his people’s disgrace
    from all the earth.
The Lord has spoken.  (Isaiah 25:6-8)


The sheet and shroud are obvious references to death, familiar to anyone who remembers the morgue scene from any procedural cop show like “Law and Order.”

I overlooked the sheet when we covered this passage on Sunday morning about six months ago, but things have changed for us since then. Now the reference to the sheet takes me back to San Francisco to Monday afternoon, December 21st, literally the longest night and the second worst moment of my life. It was the funeral home rather than the morgue, but otherwise the experience was quite similar to that awful scene from so many movies and television shows with the heartbroken parents holding onto each other and trying not to fall apart in front of strangers.

The worst moment of my life was three days earlier on the phone with the medical examiner: "Mr. Deming, I have the most terrible news about your daughter . . ."

So now this prophecy from 600 years before Jesus has great significance for Gina and me. It says the Lord will destroy the shroud and sheet and swallow up death forever. We did not just learn this and start believing it, but now we need to know it.  Just like in Revelation, this passage teaches that the Lord himself will wipe away our tears.

We will always be haunted by that Monday afternoon.  Our last glimpse of our daughter comes to mind even when we sleep, but it is not the end of our story or hers.  Death is a defeated enemy. The sheet that covers a loved one who has passed to glory will be destroyed, and we can look forward to a joyful reunion in God's presence.

Exercise in Daily Prayer

Written by: Curt Deming, MCC Teaching Pastor

Since tomorrow is Ash Wednesday, I'm asking our congregation to accept a Lenten challenge from now until Easter. Rather than giving up anything (except time), I'm proposing that we accept the invitation to daily prayer in three ways:

1. Pray John Calvin's daily prayers (4 times each day)
2. During one of those times, spend a few extra minutes meditating on Scripture each day. It could be any passage, but since we're approaching Easter, I'd recommend working through one of the gospels.
3. Once each week, preferably Saturday or Sunday, pray through the confession questions based on George Whitefield's quote.

John Calvin’s Daily Prayers:

Upon waking:  “My God, Father, and Savior, since you have been pleased to give me the grace to come through the night to the present day, now grant that I may employ it entirely in your service, so that all my works may be to the glory of your name and the edification of my neighbors.  As you have been pleased to make your sun shine upon the earth to give us bodily light, grant the light of your Spirit to illumine my understanding and my heart.  And because it means nothing to begin well if one does not persevere, I ask that you would continue to increase your grace in me until you have led me into full communion with your Son, Jesus Christ our Lord, who is the true Sun of our souls, shining day and night, eternally and without end.  Hear me, merciful Father, by our Lord Jesus Christ, Amen.”

Beginning of workday:  “My good God, Father, and Savior, grant me aid by your Holy Spirit to now work fruitfully in my vocation, which is from you, all in order to love you and the people around me rather than for my own gain and glory.  Give me wisdom, judgment and prudence, and freedom from my besetting sins.  Bring me under the rule of true humility.  Let me accept with patience whatever amount of fruitfulness or difficulty in my work that you give me this day.  And in all I do, help me to rest always in my Lord Jesus Christ and in his grace alone for my salvation and life.  Hear me, merciful Father, by our Lord Jesus Christ, Amen.”

Midday:  “O Lord God, I give you thanks for all the benefits and gifts you constantly shower on me.  Thank you for sustaining my physical life through food and shelter; for giving me new life through the gospel; and for the certainty of the best and perfect life, which is yet to come.  In light of all of these blessings, I now ask that you would not allow my affections to be tangled in inordinate desires for the things of this world, but let me always set my heart on things above, where Christ, who is my life, is seated at your right hand.  Hear me, merciful Father, by our Lord Jesus Christ, Amen.”

Bedtime:  “O Lord God, now grant me the grace not only to rest my body this night, but to have my spiritual repose, in soul and conscience, in your grace and love, that I may let go of all earthly cares so I might be comforted and eased in all ways.  And because no day passes that I do not sin in so many ways, please bury all my offenses in your mercy, that I might not lose your presence.  Forgive me, merciful Father, for Christ’s sake.  And as I lay down to sleep to safely wake again only by your grace, keep me in a joyful, lively remembrance that whatever happens, I will someday know my final rising – the resurrection – because Jesus Christ lay down in death for me, and rose for my justification.  In his name I pray, Amen.” 

Meditation Questions (once per day, while reading through one of the gospels):

 George Mueller’s:

  •  Is there any example for me to follow?
  • Is there any command for me to obey?
  • Is there any error for me to avoid?
  • Is there any sin for me to forsake?
  •  Is there any promise for me to claim?
  •  Is there any new thought about God Himself?

Or Martin Luther’s:

  • Does this text show me anything for which I should praise God?
  • Does this text show me anything I need to confess?
  • Does this text show me anything for which I need to petition God?

Confession questions based on George Whitefield’s quote (once per week):

Deep Humility

  • Have I looked down on anyone?
  • Have I been stung by criticism?
  •  Have I felt snubbed and/or ignored?

Well-guided zeal

  • Have I avoided people or tasks that I know I should face?
  • Have I been anxious or worried?
  • Have I been rash or impulsive?

Burning love

  • Have I spoken (or even thought) unkindly of anyone?
  • Am I justifying myself by demonizing someone else?
  • Have I been impatient or irritable?
  • Have I been self-absorbed, indifferent or inattentive?

Single eye

  •  Am I working for the glory of God and the good of others, or am I driven by fear, need for approval or desire for control?
  •  Am I envious?
  • Am I giving in to lust or gluttony?
  • Am I spending my time on urgent things over important things?