February 26 - Chemo Begins

First Day of Chemicals

Ok, I am going to skip ahead and share what has been happening this week.

When I was first diagnosed with lymphoma the oncologist told me that his goal was not to cure me because there was no cure for my cancer. His goal was to keep me alive long enough till someone adopted a cure. Well, it has been 21 years since then and much has changed.

The pathologist identified the cancer as diffused, large B-cell lymphoma. The approved treatment is R-EPOCH. It stands for rituximab, etoposide, prednisone, vincristine (Oncovin) and doxorubicin hydrochloride (hydroxydaunorubicin hycrochloride). Monday begins with rituximab. It is one harsh drug. It takes almost 5 hours because of the slow drip and the prep is incredible. Tylenol and benadryl(IV) begins the process then a very slow drip.

Ironically, the benadryl was the med that hit me the hardest. I ached all over for hours.  I could not get comfortable. I wanted to sleep but hurt too much. The only comfortable position was sitting in the chair with my head between my legs. My nurse finally gave me some morphine and that put me to sleep. I woke up when my oncologist touched me on the shoulder. Suddenly I felt better. I told him that if he needed a witness of him performing a miracle for his approval toward beautification on the way to sainthood to let me know. He laughed.

I also started Revlimid making my actual treatment R2-EPOCH. All I will say at this point is that it is an experimental drug. I will be posting some things about this and how I am able to take it latter. That required an act of God, because of the Pharisaical policies of the Board of Pensions.

The Bag and Pump

During my first treatment all the chemicals were delivered by an iV push. One sitting, one long drip. With my cancer the MDs have discovered that a continuous drip is better. So after the rituximab finished I was hooked up to another bag of chemicals etoposide, vincristine (Oncovin) and doxorubicin and a pump. I am like a car hooked up to a gas pump. The pump moves about .1-.2 ml of chemo into me every few seconds. It is rather quiet but I had to adjust to the constant noise.

The real challenge is showering. I cannot detached from "the pump." We used Peel and Seal to cover the port that I have in my shoulder. (I have not mentioned this because I jumped ahead) and some tape. It is cumbersome.

I am typing this on Thursday evening. The Cavs just beat Golden State so I am in a good mood. I have an appointment with a neurologist who monitors my neuropathy from the first chemo and a final session of chemo and will be liberated from the "pump" for the two weeks.

January - Hospitalization

Liquid Diets - eech

Since early November my wife has had me on a liquid to soft diet depending on how many and how painful the cramps were. The surgery did not provide any relief. I had to nurse the internal stitches. My appetite was minimal but the memory of food haunting me. I started craving pizza. It would be two weeks before that dream was realized.

Being an introvert I have never enjoyed large parties but visitors were sure welcome. Given my pain meds I probably was more entertaining than interesting. I appreciated the Deacons who came and my colleagues in ministry.   Paul Thwaite really surprised me. He showed up on Sunday after a congregational meeting.

The uncertainty of a hospital stay is a tad disconcerting. The MDs cannot give you a precise discharge date. They do not know exactly how the body will respond. So I figured that I could get a lot of reading done. Wrong. My diet and the pain put me in a "I do not want to do anything" mood.  I was able to pray and meditate but the latter usually ended in a short nap.

By Monday morning I knew that I would not be staying past Wed and probably get a Tuesday discharge. This would be good news because that surgeon at least 3 days and maybe 4 so I figured my body was responding to the removal of that nasty tumor. And it was nasty according to the pathology report.

January 2015 - Surgery

Surgery and Hospitalization

The last week of January was a busy week. I had to prepare for a surgery, 3-4 day hospital stay and recovery. I was fortunate that Pastor Clint Cozier was free to fill the pulpit and address any emergencies. Clint preached for me during my Sabbatical several years ago. He is a gifted preacher and I always learn things from him.

The most common question people ask is "How are you feeling?" I am feel strong and confident facing this surgery. The surgeon is young but obviously quite qualified, very confident, almost cocky but I like him.

All my previous hospital stays were very positive experiences. I always wondered why people would complain about them. You are the center of attention and people wait on you hand and foot. You can watch any TV you want to without feeling guilt for not doing chores. People come and visit you, send cards and call you on the phone. Even for an introvert this is enjoyable.

Post Surgery

My attitude toward hospital stays has changed dramatically. I came out of surgery and they put me in post-op. Carol claims, I have no recollection of this, that a nurse put a switch in my hand and told me to press it every 6 min for pain. Gee, I wish someone would have told me to bring a timer to surgery. She tired but was obviously late a few times so I fell behind on my pain management. The first memory I have of post surgery is in my hospital room. I am being pick up off the gurney, oh the pain is starting, lifted two feet off the hospital bed and dropped. Ok, maybe it was not that high but it sure felt like that.

After the above fiasco, I fell into a drugged stupor. The rest of the day the only friend in the room was the little red button. After several requests the nurse upped my pain meds. I would not give this group an A in pain management the first two days.

Delaton is a weird pain med. I did not hallucinate like I did when I was on morphine during my first stem cell transplant but I did forget a doing a few things.

January 2014 - The CT Scan

Yep - It's a tumor

After my GI MD ordered a CT, he called me within a few days. There was a sense of urgency in his voice. He told me that he was transferring care to my oncologist, Dr Terebelo (Dr T). He also wanted to stay informed.

Dr T and I have a good relationship. He was surprised the first day I walked into his office without a referral. He wanted to know how I picked him out of the phone book. No need to go into that now. He eventually started calling me Father John. When I got my Dmin I tried to get him to change the reference to "Father Dr John" but he never got use to it so I dropped it. He was chosen as a Top Doc in Michigan over several years.

The CT scan was pretty obvious. There was a good size tumor, approximate 15 cm. Dr T suggested just a biopsy at first to determine the type of cancer. He absolutely refused to speculate as to its type. He said two things that struck home, 1) "I have not seen a patient who survived a peripheral stem cell transplant for 17 years have his/her can return. We tend to view those patients as 'cured.' " 2) "If the mass was something other than your previous cancer or a related cancer, you would be experiencing more severe symptoms."

The surgeon, Dr Parkih, advocated for the removal of the tumor, followed by chemo. He believed that the cancer was involved with the intestine. If so, the cancer shrinks faster than new cell formation causing a leakage. He would then have to have conduct more extensive surgery.

These conversation took place in early January. Surgery was scheduled for the 23th.

December 2014

Advent - My Time of Waiting

In the Christian faith Advent is the season of comings and preparation. We celebrate the coming of the Messiah to Israel by preparing for his future coming by reflecting on his coming as our Savior. I find "celebrations" difficult when I am in extreme physical discomfort. I was not in the mood to celebrate. However, I was the pastor of a small congregation of mostly elderly people. They had called me to lead them and give them hope until they themselves would step into the Church Triumpht. (The Christian term for death) I put my own personal feelings on the shelf and led them in celebration and encouraged them to prepare for his future coming.

Writing sermons was difficult. My mind wanders too much when I am alone. Feelings of depression and negative images would often rule my thoughts. Writing sermons felt like chiseling words into granite.  However, once the words are one the page, preaching because easier. When I expound upon the Word of God hope swells within me. Hebrews defines faith as believing in what is unseen. That is easy to preach. But in the back of my mind I had lingering thoughts.

Kubler-Ross explains that denial is one of the early reactions to news of death or indications of a life threatening illness. If I was not in denial, I had one toe over the line.(pun) I did not accept that my cancer had returned. The MDs claimed that they had never seen the cancer return after so many years. They declined to say cure but the physical evidence was in my favor until the events of October 2014. But if the cancer had not returned what was wrong with me.

Christmas was a great day. Abigail came home for the holiday and Sarah was with us for the whole day. The only distraction was my diet. Carol continued to provide a balanced diet that would pass through my troubled bowels with out causing pain.

Finally the day came for the upper and lower GI. The upper GI went as expected--negative. I was surprised to hear that a hiatal hernia was not evident. Then the lower GI. This was positive. Something was there. The radiologist was willing to show me the screen as he probed my abdomen. There is was less then 3 cm from my colon. A white mass was pushing on my small bowel causing a restriction that was less than 1/3 the normal size. A CT scan was ordered by Dr Piper as soon as he got the results.

November 2014

From Occasional to Constant

I met with my primary care MD, Dr. Ronald Grose. He suggested seeing my GI MD, Dr. Michael Piper. He also made an interesting comment. After checking my belly he did not observe anything unusual.

This is where the medical care breaks down in our country. I am not blaming anyone or finding fault with any one physician. Until you demonstrate a life threatening situation, you could die waiting for an appointment. Dr Piper is highly regarded in metro Detroit and very busy. I could not get in to see him till after Thanksgiving. I tried to explain that I my condition was escalating but late Nov was the earliest appointment.

Thanksgiving was dreadful. No turkey, stuffing, no beets (ok there were a few blessings) no pumpkin pie, no apple pie, no fruit tarts. My weight started to drop. In October I was 195 and sometimes as high as 200, now I was 185-190. I was also losing my appetite.

Carol was doing everything she could to keep maintain my health. My diet went soft. If I could not gum I was not allowed to have it. After a few days I would try a more substantial dish but would suffer the consequences 3-4 hours latter. We finally gave up on that experiment.

Piper ordered a upper and lower GI but once again it would not take place till after Christmas.

October 2014

Something is amiss

I did not have any other symptoms for the first two weeks in October. Then something changed. I kept having issues on Friday night. Saturday would be a miserable day of pain every 3-5 minutes. I fasted and by evening my abdomen would be very tender but the intense pain would not be ripping through my stomach like a knife.

The last Sunday however, things changed. The pain became so severe that I had to leave a part time job early and ask a friend to drive me home from the Howell Nature Center (HNC). (I was a facilitator with HNC working with a treatment program, Accepting Responsibility is Mandatory (ARM)). Now things were getting serious.

September 20, 2014

First Indications of Cancer

Since my stem cell transplant in 1997, I have had issues resulting in small bowel blockages. They are quite painful and a few have resulted in hospitalization but no surgery. We, Carol and I, have struggled to figure out what was causing the blockage. The MDs(Doctors) were baffled. I was tested for allergies but the allergist found nothing. In addition, I also had low protein and albumin. This was curious because I was eating food with high protein.

Dr Ballinger, my GI MD, and Carol finally figured this out. Carol asked if there could be something blocking the digestion of protein. Dr Ballinger did some research on this and discovered a few cases in which that occurred. Protein is digested after fat. Since I was also eating a high fat diet my body was discharging the protein. We changed to a very low fat diet and my protein level rose, never to a normal level but much closer.

Lets get back to the blockage. Over the 17 years since my transplant I would endure the pain of a blockage until I vomited and the pain would ease. The last time I required hospitalization was in 2012. Carol and I finally figured out what was happening. I did not chew my food properly. If I had beef for lunch and was in a hurry, I gulped and usually ended up with a blockage.

 However, this September something else happened. I did not eat beef but chicken. After vomiting the pain continued. I was in agony and had Carol drive me to the hospital. The MDs gave me some morphine, stuck a garden hose up my hose (actually the ER nurse who performed this was fantastic), and admitted me to the hospital. This was a Saturday morning. I scrambled to find a replacement. Fortunately I the Rev Dr. Roxie Davies was available. The blockage finally dissolved and I was released on Tuesday.

After one of these episodes Carol puts me on a all liquid to very soft diet. Nothing solid and certainly no meats. My body responded and eventually I returned to a normal diet.