Thursday, July 2, 2015

Roller Coaster Ride

A transplant is a lot like a roller coaster ride. Lots of ups and downs. Today had both. A night of swallowing the prep liquid for a colonoscopy was brutal. The scope showed nothing but Carol and I may have made a discovery, all my vomiting appears to have occurred after having a milk product. We need to eliminate milk and see if the v and d disappear .    

Tuesday, June 30, 2015

Feeling better

It has been 25 days since my transplant. The roughest 25 days of my life. I am glad that I cannot remember day 0 - 10. It was too brutal. My mouth was so bloody and sore I could barely swallow. I had two angels watching over me Maddie and Monica. Without their devoted care I do not know how I would have made it. Carol was taxed out. The severity of this transplants was well beyond the first. Compare a hand grenade to "Little Big Man."

The staff have been fantastic. It is a dirty job they have and must be tough watching so many people in pain. Somehow they do not lose their empathy.

I am trying to each and drink but not too thrilled by either. I try to eat a little more each day to build strength. It is working slowly

God sent a priest to bring comfort and encouragement, Ft Luke is great.

Friday, June 5, 2015

Born Again

Reformed theologians do not believe in multiple rebirth experiences. Once we have been reborn we are reborn. Once we have been baptized, we do  not need to be rebaptized. Once we have been baptized by the Spirit we have been baptized by the Spirit. That is not to say that we cannot experience profound spiritual encounters that may be deeply emotional and spiritually convicting. However, I just experienced my third rebirth.

It was not a deeply moving spiritual experience, it was biological. My first rebirth came during a worship service in Northfield, OH. The second rebirth came in a hospital room at the University of WA. This third rebirth came on the 8th floor of the Karmanos Medical Center. My stem cells were transplanted into my body.  I would not have any WBC to fight infections or platelets to clot and to stop the bleeding of a wound. It is like a rebirth because without that transplant I would either die of an infection or the loss of blood from a wound.

The transplant is rather anti-climatic. Several nurses all stand around while on nurse takes a bag of stem cells, thaws it and hooks it to an IV. They used 4 bags and the transplant made me very cold. The cells are stored at -450F and thawed before they are injected into me but they still dropped my body temperature. I do not remember being as tired the first time as I was after this second transplant. I slept alot today but I still got in my walks. Sixteen laps is a mile and I have done 25 so far. The MDs recommend at least 16. The record is 1,600 laps. The guy my have been in his 30s and an avid jogger.

I am still reeling over the inept game plan that the  Cavs displayed in the fourth period and in overtime. Blatt just may be the first coached fired after taking a time to the Finals. I am a big supporter of him but whoever thought isolation basketball would win was badly mistaken.

Sunday, May 31, 2015


It is Sunday night and BMT -5 ( 5 days till bone marrow transplant ). I am very comfortable tonight. The past three days I have had a lower back ache. It would be at its worse in the morning when I try to get out of bed. A few days it was quite severe during the day. It finally ached so badly they gave me a muscle relaxant, ibuprofen, and oxy. I slept for a few minutes but woke with no pain. That was at 3:00 pm this afternoon.

The pain in the back interfered with my desire to write in this blog. Pain prevents me from concentrating.

Carol stayed with me the whole weekend. I do not know how I would have made it without her. That is how bad the pain was. It is very lonely with her gone.

The medical staff has been great. Everyone is so willing to help. The nurses will get me drinks, towels, and/or blankets. The assistants are all to eager to do the same. The only negative are these darn pumps. They seem to run out or fluids every five minutes. They are a bit self conscious about their comings and goings but I do not think they are excessive.

It is 10:00pm and I just finished my chemo for today. It was a two cycle process. One at 6:00am another at 8:00pm then repeat at 6:00pm and 8:00pm. I was given anti-nausea drugs at various times.

People ask me all the time, "How are you feeling?" The actual chemo does not zing me till at least three days after treatment.

Carol and I read from Is 6 today during a time of worship together. It is a rather famous chapter in which God reveals his glory to the prophet who is overcome with his own sinfulness. I am glad that the God I worship can overwhelm us. It gives me greater confidence during this difficult period of healing.

Wednesday, May 27, 2015

Suprise Injection

I went to bed the night before my first harvest. I was tired from preaching and all the other things we did. I think that I did take a nap that afternoon. About 3:00 AM I got up to visit the bathroom. I also need to change my pajamas from sweating. I had put on too many covers. Shortly after returning to bed I felt a needle-like poke in my inner thigh. I go out of bed, went to the bathroom and examined my leg. I had been bite by something, wasp, hornet, bee, something.

I returned to bed and pulled off the covers looking for it. I was not going to have a repeat. I had to shake some covers but I finally found the critter--a yellow jacket. I crushed him and placed his dead carcass on the counter in the bathroom for Carol to see in the morning to prove I was not hallucinating. She slept through all of this.

The next I arrived at the clinic to have my stem cells harvested. My WBC was only 9.89 M they prefered 10 M because the harvest of stem cells is usually 10%. However, they harvested anyway. I then had to sit around till 7:00 pm to receive a shot of another drug to boast my WBC.

I found out the next day that they had harvested 1.45, an unusual amount for such my WBC. I asked if the body produces WBC after being stung my a yellow jacket. The MD in the unit did not know but he laughed at my story.

Carol and I are rushing around to get ready for my hospitalization. I will try to post another entry tomorrow, after all, I will be rather limited in my movement.

I cant wait till June 4, Go Cavs!!!!!

Wednesday, May 20, 2015

Stem Cell Harvest

The past several days have been very challenging. My oncologist at Karmanos Medical Center has been trying to convince me to use a donor for my transplant. I had them send information to my sister to see if she was a match. They also searched the donor data base. Apparently, doctors have identified 8 markers in the stem cells that are required for a transplant. Seven is ok but 6 is very risky. Without a good match the patient usually suffers a graft-host disease that is potentially fatal.

I was adamant about my opposition to an allogeneic (stem cells coming from a donor) transplant. As a chaplain at Central WA Hospital I performed the funeral services for several patients who had an allogeneic transplant but none from a person who had an autologus (stem cells coming from the patient). They argued that since my immune system could not permanently keep this cancer at bay, maybe another would. Secondly, patients seem to fight the cancer better with an allogeneic transplant.  Also, my MD was not certain that they could harvest enough stem cells from me because of my age and having already had a stem cell transplant.

I countered that my immune system fought the cancer for 18 years. What if if only does it for 1/2 that, I will be 72. Yes, I would like to live into my 80s but 72 is not bad. I also believed that this tired old body could still produce the required stem cells with help from their white blood cell medication. But I did not tell him that. When I refused to agree he finally conceded.

Preparation for harvesting required self-administering 3 shots each morning for six mornings. I picked up the pre-filled needles on Friday--total cost, $7,600. Thank you Board of Pensions. I had to watch a video and have a nurse watch me inject myself. The needle was rather short and only went into the body fat of my belly. But rather than put all the medication into one needle, it came in three. So that meant 3 shots. Ouch.

The medication is called neupogen. I received it during the first transplant. One side effect is flu like symptoms in the bones. I had these the first time but felt fine this occurrence. However I was very grouchy. Pray especially for Carol, she has to listen to me.

I arrived at Karmanos Tuesday morning at 7:00 AM. They started with a blood test to determine if my WBC (White Blood Count) was high enough to harvest my stem cells. The WBC has to be over 10 million. This guarantees a harvest of 1 million. A successful harvest requires 2 million. My count was only 9.89 but they decided to try the harvest.

After the harvest I was given a shot of a drug that cost nearly $10,000 to boast my immune into overdrive so that the second day of harvesting would be more successful. Thank you Board of Pensions.

To learn about a surprise injection at 3:00 AM in the morning and the results of the harvest come back in a few days. I am tired and need to go to bed.

Tuesday, May 5, 2015


This is my stay away from people week. I am hoping to stay out of the hospital. Although I do not believe that people are the problem. One MD told me that the body has enough bacteria in it to manufacture a fever if the WBC is low enough. After all their tests 6 weeks ago, they still could not identify the virus(s) that put me in the hospital.

May is going to be a busy month. At least the chemo is over so my strength will be returning. I will have a series of neupogen shots to boost my stem cell production in hopes of harvesting enough for a transplant. I will have a catheter inserted into a vein for the chemo and transplant of the stem cells, and a protein test. All before the scheduled admission.

Karmanos and Catamaran really came through on getting my transplant approved quickly. They did it in less than 24 hours. Carol thinks that Catamaran has a note in my file to expedite my requests. I have had way too many problems with the drug company in the past but this time it was outstanding.
I hope this continues. I have a few bills that are very complicated to understand and require additional phone calls. I do not need any more.

I have been really tired today. This is unusual for the Tuesday after chemo. Normally I feel beat up as if I had just gone ten rounds with Floyd what's-his-name. Actually I doubt if I could survive one round. Tired is actually good. I have done some research on my sermon and made several phone calls but it is frustrating because I would like to do more.

The community garden is really far behind schedule. We do not even have the plots laid out. I was able to stake out the outline to half the area on Sunday and Monday but the rain and my physical condition prevented any work today. Someone volunteered to help on Thursday. Hopefully the two of us can get it done.

Friday, May 1, 2015

Last Day of Chemo

Today is my last day of chemo. I will be delighted when this pump and bag come off. Now I rest and recover for the transplant.

The oncologists at Karmanos want me to consider receiving stem cells from a donor. I told them that is only a last resort. I witnessed too many patients with host - graft issues when I was a chaplain. They are testing my sister to see if she is a match. I am still praying that they can harvest enough stem cells from my body to make the point moot.

I meet with the oncologist on Monday and will receive neupogen injections to stimulate my stem cell production. A week later the stem cell harvest will commence. I am more confident than my oncologist.

Yesterday I had a pulmonary function test. My lungs are in good working order. I just wish my endurance was greater. I helped more four cold frames about 15 yds and was worn out. I did the latter so that my former primary care physician could roto till the garden. He is a great guy and has a garden size John Deere. He takes a few hours but he does an excellent job of turning the soil. It makes planting so much easier.

Time to return to my sermon study.

Monday, April 27, 2015

Last Chemo This Week

This has been a good week. I was very tired on Monday and Tuesday but I felt great. The weather also helped. After the cold snap early in the week the sun came out and lifted my spirits on Friday and Saturday.

I had enough strength to cut the grass on Saturday. I took several breaks and walked very slowly, too slow actually. My battery powered mower expended its charge and I had to recharge to finish the lawn. After mowing I trimmed three small prickly bushes. We want to keep the bushes small so I pluck off all of last year's growth. Now that I know how I want the bushes to look, the trimming goes quickly.

Carol's sister visited us this weekend. She helped Carol plant some things in the garden. I hooked up the hoses and made sure that the sprinkler line did not suffer a splint from a winter freeze. Fortunately, everything worked the first time.

I have mixed emotions about the Cavs victory over the Celtics. The loss of Kevin Love and JR's possible suspension is really going to hurt. We shall see if Lebron and Irving can carry the team.

This week is my last week of chemo before my stem cell transplant. Since the PET scan could not find any sign of lymphoma, the oncologist at Karmanos recommended canceling treatment #5 and #6. I did not raise any objections. At the moment, I am scheduled to enter the hospital on May 28, eighteen years and 8 days after my last transplant.

The medical staff has much to do before May 28. They want to harvest my stem cells on May 18, conduct tests of my kidney, liver, and pulmonary functions, and examine my veins to determine if I get a pic, or Hickman line. The latter would be cut into my chest and inserted into the vein that leads to the heart. It is difficult to take care of but after the initial surgery I do not feel any pain because it hangs from my chest. The former is in my arm or shoulder and can be painful ever after it is stabilized.

I will be glad when the next two weeks are over and I begin my recovery for my stem cell transplant.

Thank you for your prayers.

Wednesday, April 15, 2015

Long Day

Well, its Wednesday and I woke up in my own bed. That was very good news. Very tired. This is my down week and for the first time I am not in the hospital. Carol and I traveled to Karmanos Cancer Center to discuss with my transplant MD the next steps. We were surprised to learn that he is recommending the transplant take place after treatment #4 instead of #6. He does not believe that the additional two treatments would be an any substantial benefit. That means all the plans need to be moved up a month.

I still have a few procedures to complete--pulmonary, kidney tests, and harvesting of stem cells. This new schedule would be nice.

Tuesday, April 14, 2015

No Fever

This is the second week of Cycle #3. During the Cycle #1 and #2 I spent Tuesday night of the second week in the hospital. It's 11:00 pm and no fever insight. Hopefully my temp will stay within the normal range and I will wake up in my own bedroom tomorrow morning.

I am feeling so much better than three weeks ago. I was a complete basket case then. This week I have only been a partial basket case. On Monday I was able to fertilize the lawn (That is almost a miracle). I did rest for a long time afterward. Then went to the office and put together a liturgy and did a little research. Today I attended an early meeting then slept. Six AM came to early but I really wanted to hear about the plans to develop an ecumenical ministry. This afternoon I shuffled around a series of online files that will assist me in my sermon research.It was not heavy duty work.

I am so glad I completed the tax forms over the weekend.

We have had several inquires about the garden plots. We have yet to get the area plowed but that should happen this week. We have already reduced our plans for this year. I will not be able to much more than pick a green bean or two. Carol's leg will prevent her from doing any serious work. Pray that God would send us some volunteers on a weekly basis.

Thursday, April 9, 2015

Good News

I am in the middle of Round #3 of my treatment. I am feel very good. I do have a decrease of strength and my nerves are a bit testy. You do not want to be a customer service representative for my drug company that makes it a habit to delay processing my medication.

After two hospitalizations my MD reduced the strength of the chemo by 25%. We agreed to go with the stronger dose to see how much I could endure. Unfortunately he now has to back off a tad.

We received some outstanding news today. I had a PET Scan today. It did not detect any evidence of lymphoma. We were somewhat surprised although we were praying for this. We thought that it would indicate minor bright spots, meaning that the cancer was shrinking but a few cells were still present. But to have a normal scan, PTL.

This does not change the treatment plan. I will still complete 6 cycles of treatment and if my body continues to withstand the onslaught of chemicals, have a stem cell transplant in July.

During my first bout with cancer, I was absolutely convinced after the first treatment that God was going to heal me. I have a letter from my MD saying that I had a "medically unexplainable reaction" to the first treatment. It was too good to believe. This time my confidence level has been at a low ebb. I really needed to hear the news of this PET Scan. PTL I know that I am going to need all the confidence, faith and hope to endure the coming months. This is just one small step. The fight ain't over.

Friday, April 3, 2015

Good Friday and Easter

This is my second Easter in which I am also undergoing chemotherapy. The first time I was in a hospital room with 0 WBC. I was on my way to a stem cell transplant. This Easter I get to preach on the Resurrection and enjoy a roasted lamb with Carol and Sarah.

I had a PET scan today. Now I get to wait and wonder for six days how effective the treatment has been. Carol is praying that it will not show any bright spots that indicate the cancer is still active. I have prayed that prayer but my faith is just not strong enough at the moment to believe such radical news.

This has been a good week. I have gotten lost of sleep. I feel stronger. That is a relative term. I can still overwork myself in just a few minutes of activity. The test will be tomorrow. I want to do some outside activities. I promise to rest and drink lots of fluids.

My sermon is about living the resurrection each and every day. It is from Colossians 3:1-4. I believe that we must demonstrate our faith in the bodily resurrection by living each and ever day just as if we stepped from the grave with Jesus.

Sunday, March 29, 2015

Sunday Evening

It has been a long day. I preached this morning after my discharge from the hospital on Sat. The sermon, "I love a parade" on three lessons that I glean from Jesus' entrance into Jerusalem. My strength was noticeably diminished but this may have been the result of dehydration.

After the worship service we went to Sarah's for lunch. We enjoy having her in the city. She arranged for us to go to the Diego Rivera and Frida Kahlo exhibit at the Detroit Institute of Art. I will let you Google their names. He painted some stunning murals to honor the laborers of the auto industry. He was an ardent communist and described his work as revolutionary art. I would not put any of it in my house, even if I could afford it, but I enjoy reflecting on it every time I go to the DIA. It is powerful in its statement about the exploitation of the worker. I had to take a chair to rest as I listed to the narration of his life and work.

This week will be my recovery week. I am going to get a scan on Friday to see how much of the cancer has been destroyed. I am a little nervous about it. We are praying that the scan does not find any trace of cancer. I wish that I could really believe that God was going to answer that prayer. Lord, help me in my unbelief.

The people in the church are really helping out by making us meals. We are going to get one meal a week. The first came this weekend and its timing was perfect. Thanks everyone.

Saturday, March 28, 2015

Home Again, Home Again


My WBC improved on Friday to such a level that Dr Terebelo was confident that I could go home again on Sat morning. This was good news. I did not want to miss another Sunday.

My strength improved on Friday. I felt as if I could go home that day but my lab report says that it is still not a good idea. This will give me a chance to watch MSU vs Oklahoma. Hopefully, MSU can pull another Big Ten upset.

I did not spend as much time in meditation during this hospital stay. I am not sure why. Concentration was more difficult for me. I wonder if it was due to my attitude. I just wanted to go home and did not want to accept the reality of the situation. I did not want to deal with tubes, pumps, frequent bathroom breaks.


Dr T told me at 8:00 am that he was discharging me. I was packed and ready to go by 9:00 am. My WBC was normal and there are no restrictions on me. Tomorrow Carol, Sarah and I will go to the Detroit Institute of Art to view a Diego Rivera exhibit. He romanticized the industrial aspects of Detroit. I would not hang any of his paintings in my house but he is interesting to view.

No Pleasure Cruise

No Pleasure Cruise

The last three days have past slowly by. I had some good visit by Vance Walker, Bob Cousineau and Clint Cozier. They helped to past the time. I slept a lot yesterday. My hemoglobin was low. I noticed a major change in my energy level after a transfusion.

Today is Friday. It is the first day that I really feel like concentrating on writing. The last two posts were forced. I am more relaxed this morning. Just returned from the Heart Institute. They did an echogram of my heart to make sure the chemo was not destroying it. I won't know the results till tomorrow.

This chemo is much harder than anything that I previously had. My body is feeling it. I still have four treatments before the bone marrow transplant.

I watched Bucket List last night. What a great movie. I need to meet a billionaire so that I could complete my bucket list. LOL. I have thought about such a list. However, I have one major problem. All my items require excellent health. Hike through Zion NP, Bryce Canyon NP, Yellowstone NP, Monument NM. Travel through England and Scotland.

Thursday, March 26, 2015

Round #2

Treatment and reaction

Round #2 was a lot like Round #1. I had a neulasta shot to boost my white blood count a day earlier than for the previous treatment. We were hoping that it would prevent a fever.

The infusion of the chemotherapy was the easy part. Enduring the explosion that goes off inside the body was not. Monday was another difficult Monday. Aches and pains especially in the knees and the lower back. I got some work done after taking some Excedrin. I found out afterward that I am not suppose to take anything with acetaminophen. Won't do that again.

Tuesday was a lot like Monday. I had a spiritual direction appointment in the afternoon and felt really good. I was beginning to think that maybe the neulasta would prevent a fever. Wishful thinking. At 12:30 am my fever was 100.4 then at 1:30 am it was 102. Back to the hospital.

Ever try to get dressed shivering with a fever at 1:30 in the morning. That was a tough.


We arrived at the hospital and there was only 2 others in the waiting room. I thought that I would get into a room faster than last time. LOL.

My temperature was 99 but my WBC was too low to release me. They did not infuse me with antibiotics at the same rate as the first hospital stay but they told me that I needed to be admitted. This was at 3:00 am. However, the hospital was full. The next morning they moved me to step down unit in emergence. By lunch all the rooms were full. By 3:00 pm they had people lying in beds in the hallway. Providence Park has become a popular place. The Fellow for my Oncologist said that they had 23 waiting for rooms. He was able to prioritize a room for me. I finally got to my room about 8:00 pm.

Family Vacation

Driving to the Condo

After rushing to the airport we collapsed into our seats, thoroughly enjoyed the flight to Atlanta and then on to Ft Myers. Renting a car at 12:30 am is not the best option. We were given two cars from which to choose. The car was nice but I thought that it would be bigger.
Traveling is so much easier with the GPS phone app. I remember getting lost so many times driving from the airport to my destination. We did make a couple of wrong turns. The roads on the island are not easy to follow. That from someone who learned to deal with an intersection that brought together South Commerce, East Commerce and Commerce and the driver who is on Commerce still has to make a left had turn to stay on Commerce. Are you confused, that is my point. Anyway we finally found the condo and were given a hero's welcome by my children.

The Beach

The condo my mom rented was within 50 yds of the beach but our travel guide (a.k.a. Sarah) had plans for us for the first two days. We traveled up the island so Sarah and and Abby could go on a boat to a nearby island to snorkel. The next day we took them to rent kayaks. While they did their outdoorys stuff we laid around on nearby beaches and enjoyed the sun. Inara entertained herself with whatever was handy. Occasionally we would take her to the water and she would walk in the surf. She never seemed to have a preference for either water or sand nor an aversion.

Carol enjoyed searching for sea shells. We came back with boxes of shells. She plans on making many sea shell craft projects.

The only weakness that I saw on Sanibel Island was the type of sand. It is a grayish color, very fine grain, and very moist. It is very difficult to clean out of shoes, socks, between toes. We had sand in our suitcase when we arrived home.


About the third day Inara came into my room before I got of bed. I think she was sent to wake me up. To entertain her I pulled out my computer and connected to YouTube and played my Joan Baez videos. She enjoyed them bobbing and weaving to the tunes. From then on she rushed into my room and either pounded on my laptop or the bed to indicate that she wanted to hear the tunes. Baez has a very lovely song entitled Jerusalem.

The last few days were spent relaxing on the beach. We avoided sunburn, gathered lots of sea shells, and enjoyed our family time.

Monday, March 23, 2015

Florida Miracle

March 5 - Set back

On Tuesday I thought that the worst was over. I went to the office and tried to do some work. I noticed that I could not get warm all day. I figured that it was due to the lack of heat in the church. By mid-afternoon I was shivering. I went to supper with a friend and could barely control the shivering. I never even thought that I could have a fever.

After dinner I went home and took my temperature--102. I was suppose to head to emergency when it reached 100.4. Upon arriving at the hospital I received 4 antibiotics, given in 1/2 hour increments to watch for an allergic reaction. I was admitted to the oncology floor. Things were not looking good on Wednesday morning. The medical team was very negative about my plans to travel to Florida for the family vacation. They did not think that my infection fighting WBC would be at a safe level.

The hospital stay was uneventful, except for the WBC kept going downhill.

On Friday I spent sometime standing in a sunny window meditating. I visualized my WBC multiplying. I also sought God's guidance and offered my petitions. I really expected the counts to improve on Sat, however, they only moved from 70 to 190. It needed to reach 1000. Carol and I began to talk about alternative plans. Sat night I spent more time in prayer and meditation.

The Miracle

I went to bed Sat night a little discouraged. I assumed that under the best scenario, Carol would go on Sunday and I would follow on Tuesday maybe Monday if a miracle happened.

On Sunday morning the Fellow entered my room and announced that my count was 1240 and that I was going to be discharged. PTL

Carol and I had to rush around but we packed and drove to the airport in time to board our flight

Tuesday, March 3, 2015

March 3 - Recovery

Energy Rising

What a difference a day makes. I was miserable yesterday. My whole body ached, with flu like symptoms. The bone marrow was producing white blood cells and it hurt. A new medication newlasta puts the marrow in overdrive but my body was going full tilt before I even received the shot.

Today started out slow but with some Tylenol and a nice breakfast with Carol things began to turn. I am relearning the importance of pushing myself through pain. When I was in my 20s and 30s, I would run and do this. I got lazy after I passed 60. Each movement yesterday required determination and effort.

Good Intentions Just Don't Make It

I’ve recently been reading Andy Andrews book “The Noticer.”  Great book, claims to be autobiographical but is is a story that is hard to believe.

In it, the main character, Jones, asks a young man who is struggling to change:
“Five seagulls are sitting on a dock.  One decides to fly away.  How many are left?”

The young man answers: “Well… Four.”

“No,” Jones responded, “There are still five.  Deciding to fly away and actually flying away are two different things.”

Isn’t that the truth? This illness is forcing me to decide to do things and doing them to completion. I needed to relearn this lesson. I had gotten sloppy with my life.

The Walls are Shaking

A pump on the boiler in the building decided to spring a leak. We had water spraying all over. Good think we have an inventive custodian, Thanks Dan for your ingenuity.  The heating repair man is onsite. The whole building is shaking as he tries to pump water back into the system.

Sunday, March 1, 2015

February - Backtracking

Waiting for the News

After surgery I had to wait for the news on the biopsy. We were expecting cancer but hoping for something less severe. I was actually anticipating the worse. As Dr Terebelo told me the news a deep sadness rested on me. He tried to be hopeful but made sure that I knew that this was an aggressive cancer.

Kubler-Ross talks about the 5 stages of grief. I have found that those 5 stages relate to anyone encountering a crises-denial, anger, bargaining, depression and acceptance. I think that I was in denial during the fall. The signs of a relapse were evident at the time of my first hospitalization--night sweats. I skipped anger and bargaining. I have been angry at God for other things but never the cancer. I recognize that there is no way you can bargain with God. He holds all the chips. So I jumped immediately into depression. After wallowing around for a few days I had to face reality.

Being a preacher has often forced me to address situation in my own life from the pulpit. (Hopefully without the congregation knowing that I was preaching to me not to them.) This was one of those times. Knowing that I had to stand up on Sunday morning and bring a message of hope to the congregation was very helpful.

The sermon was on the Transfiguration. It was more theological than experiential. It was not about me and my cancer but about the revelation of Jesus Christ. That gospel is a story that is not the creation of human myth and legend. It is a reality upon which gives me strength and hope as I walk through treatment. Those were my thoughts going through treatment. (I'll post the sermon latter. I would enjoy reading your comments about it.)

The reminder lifted my spirits and slowly the depression eroded. As the time for treat approached I noticed a change in my attitude. I am going to participate in the fight. I am going to place my trust in the power of God to heal, transform and resurrect.  I started nurturing a positive outlook that God still has things for me to do for is kingdom on this earth, and if not than to die is gain. (Philippians 1:21)

Thursday, February 26, 2015

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.

Tuesday, February 24, 2015

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.

Monday, February 23, 2015

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.