You look good for how sick you......

On Monday, I called the Melanoma Clinic mainly because Mary wanted me to. I told them I had belly pain and had a distended hard belly. I had no fever or any other symptoms. I told them I had just flown home from Las Vegas and wanted to update them on my visit to the Urgent Care there. They asked if I had any shortness of breath and I said yes and that the small cough I had had just started today. The nurse said she would talk to my oncologist and get back to me. She called at 5:30 pm and said the doctor wanted me to head to the ER and that he was most concerned about the shortness of breath. (What I didn't know at the time was that most deaths for Stage IV Melanoma patients are from pulmonary embolisms and blood clots to the heart or brain.)

I was immediately taken into the ER and on my way for an ultrasound test of my legs and a CT scan of my chest and abdomen. No thrombosis were found but my liver was significantly swollen. Several indicators in my blood work up did not look good. The decision was made to keep me for observation. However, the medical floor did not want to accept me and wanted me sent to ICU. The ER doc did not think that was necessary so I spent 3 hours in the ER Critical Care Unit before I could be sent to the med floor. The ER doctor explained that if you looked at my paperwork on the computer only you would say I was a critical care patient that needed to be in the ICU. He sad however he had seen me and talked to me for several hours. While I am critically ill I did not need to be in the ICU. So I eventually went to the med floor by 6:30 am.

After a more through review of the CT scan, they still don't know the reason for the swelling. It is one of two things. One is that the TACE procedure is working and my.liver is struggling to get rid of dead tissue. Secondly it could be that the tumors have grown significantly. The review of the scan cannot be conclusive at this time. So we will have to wait for a few weeks to let my liver settle down and the repeat he scans in the hope of getting a better view.

In the meantime, more pain meds and I have been removed from all high blood pressure meds and diabetes meds to help allow my live to settle down. Have to admit that I am tired and nervous about what the future holds for the next few weeks. However, there is not much that can be done but to rely on the loving hands of God.

Once again thanks for all your prayers, love and care for me and my family.........

Medical Plans

In between the plans and funeral for Ken I had a few doctor's appointments. On Wednesday, I met with my ophthalmologist and had another injection in my eye to try and clear the blood from it. I am scheduled to return to her in September to see if the hemorrhage can be seen well enough to be lasered closed. In the meantime, I wear the eye patch to help balance out the light and relieve the stress on my other eye.

I met with my surgeon who did the TACE procedure in July. Due to the harsh recovery I had with it, he wants to hold off on attempting to do the procedure on my right liver lobe and the two tumors there. I have another set of blood work ups this coming week and a CT scan set for Thursday. If they look good then I will restart the immunotherapy on Wednesday, September 6th. Once the surgeon reviews the CT scan results, he will decide on when to do the second TACE procedure.

I continue to struggle with balancing blood sugars primarily with being on the steroids. Hopefully as I can taper completely off them then the blood sugar controls will be able to be more helpful. I had to go to Urgent Care last week in Las Vegas because of abdominal and back pains. The doctor did not find any indication of infection. However, he did find extremely high levels of sugar in my urine,. He said it looked like I was urinating maple syrup. He said patients with these high levels in their urine often have abdominal and back pain. Drink plenty of fluids and get lots of rest. He said he suspected it would clear up once I got off the steroids. Lets hope so......

Death Knocks Again.....

On Monday morning, August 14, 2017 at 2:15 am, Mary received a call from the floor nurse at St Mary Hospital in Livonia to inform her that her dad, Kenneth Ureel had just passed away during the night. We spent the next day on the phone with the funeral home and the church making arrangements for his funeral the next Friday. We had just talked to the doctor at the hospital earlier and were told he was doing better. However, we all  knew he was ready to pass on and he wanted to be with Colleen.

Having just gone through planning Colleen's funeral in March it made all the planning for Ken's funeral so much easier. Mary told me that if I did not want to preach at his funeral she would understand. She knows how emotional I have been with fighting the cancer and being on the steroids. I gave it a couple of days of thought and decided to preach at the funeral. Once again I do not know how you prepare to preach at the death of a close family member but the Holy Spirit leads you to where you need to go.

What an emotional time this has been for all of us.......

Life keeps beating along.....

It has been so long since I stopped by these pages and so much has happened. I do not know where to begin.

Mary had suggested we should go back to Bar Harbor and spend some time in the Acadia National Park. It has always been a favorite place for us. So we flew out with Chris and Michelle in tow. Brian and Megan met us there the next day. We spend 6 days exploring the various places on Mt Desert Island. We ate lobster and ice cream and spent a night our watching for asteroids in the darkened sky. We went out into the ocean and saw some wonderful whales. Brian and I got a chance to ride in an old B-17 WWII bomber that was in town and had a great time together.

Some things I learned however. On steroids you sweat profusely. Even when it is cold you sweat cold sweat! It doesn't take long to get exhausted and winded when trying to keep up with the small crowd. Naps are needed no matter what you do and sometimes those are taken in the car in a parking lot while the others are out looking around.

I had to wear my eye patch and Christopher and Michelle said they would do the driving in Maine. So at the airport when we arrived and when we left Christopher took over the car and drove us everywhere we needed to go. It is a humbling fact to know that now you need to rely on your children to get you around!

At the airport in Bangor Maine I had an encounter with a little girl that I found fascinating.

I was siting charging my phone at a station in the airport. I little girl about 6 years old was sitting with her family next to me. She stared at my face for a few minutes. She walked away and leaned into her mother's ear and whispered something.

The mom said, "Well just ask him if you would like." The mom turned to me and asked if it was all right if her daughter asked bout my eye.

I looked at the girl and said, " What would you like to ask honey?"

The girl said, " what happened to your eye so that you have a patch on it?"

I said, " Well I have cancer in that eye and sometimes it bleeds inside and makes it very difficult for me to see. I wear the patch to block out the light in that eye so that I can see better out of my other eye."

She said, "Oh thank you."

The mom asked, " will you ever be able to see out of the eye again? Will they be able to cure the cancer there?"

I said hopefully soon I would be able to see as the blood cleared my eye. However the cancer has metastasized and there is no cure for it."

The mom said, " I am so sorry."

I said, "thank you but right now I just had a week with my family to make some new memories and to remember some old ones."

She said, "Good for you. Living life each day as best you can,"

Later the little girl came up to me and sad, "My mom ad I are going for a walk."

I sad, " have a great walk and you stay close to your mom."

They came back later and the little girl came up to me again. I asked, "Did you haev a fun walk?"

She said, " yes and lifted her sleeve for me to see and said, " I got someting too."

There was a roll of life savers in her sleeve. I said, " I love life savers what color do you like?"

She said, "Shsssss, I can;t let my brother know I have them." In the background the mother smiled at me and I put my hand over my mouth.

A few minutes later the family was called to board their plane. The little girl said, "Good bye sir,"

I said, " have great flight home."

The mom came over to me and said, " thanks for being so kind to my daughter. I will remember you and pray for you."

I thanked her and the walked off.


This encounter reminds me of the innocence of children and the kindness that can be shared between strangers, If only we could learn this earlier in life I believe so much of the hatred and division in our world could a be avoided.

TACE and hospital learnings.......

On my way home from the TACE surgery at UM. Once again an excellent experience at UM Hospital. The surgeon flooded my one liver lobe that had the four tumors in it and will do the other one in about a month if there is shrinkage or slowed progression. They inserted a slurry of pellets that are 1-3 microns in size into the vascular systems of the tumors. These small pellets clog up the blood flow in an effort to starve the tumors. Feel like someone punched me in the ribs and a horse kicked me in the back but got some good pain killers!!!

So what do you do when you have returned home from your TACE procedure and you wake up at 4:00 am in excruciating pain. You sweat profusely and can't breath because the knife in your liver stabs you each time you breath in.

Them you go back to your friends at UM Hospital so they can put you in another morphine drip. After two days they can now talk about managing the pain on oral drugs so that you can go home again!!! Have to admit the smile has not always been on my face but Mary says the real me is starting to come back.

Thanks to everyone for all the prayers. Your love and concern has been most gratifying.

Disconnected and set free at 1:00 pm on Tuesday!!!! Praise God in all things.....

What did we learn:

1-Pain management is critical because once it gets out of control it is so much harder to get in front of.

2-When in pain don't be so noble as to not ask for pain meds as the consequences can be serve.

3- Learn how to ask for help from those who love you.

4-Let those who love you know when they are hovering and it is not helpful but can actually can cause pain.

5-Realize that life on narcotics can get pretty weepy and you need to understand that. Now I understand when I met my good friend Fr Tod Laverty OFM at Henry Ford Hospital with liver cancer and returning from his ordeal in Italy before he died. He said to me, "Don just tell the parishioners that I am a little weepy but that I am OK with it all." Now I understand what he was telling me. 

6-When you have a disease that is going to end in death then the side effects of a treatment that "May cause death" don't seem to  be so stark anymore.

All will be well and in the end all will be well...........

The Eye of the Storm

So last Wednesday, I was at the ophthalmologist for the final check of the bleed in the left eye that was irradiated several years ago. I walked out with a clean bill of health with a appointment for a six month check up. On Friday, I was working at my son's house installing the gas line for his new dryer. When I finished, I bent over to pick up some tools. I stood back up and it looked like an atomic bomb had gone off in my eye again. I called and got an emergency appt with the eye doc. He said it looked like another bleed from the weakened vascular area of my eye. There was so much blood in the eye that he could not see the actual bleed area. They wanted to do a dye scan but realized I had a CT scan that morning and my system was already compromised by the dye from that scan. I came back this Wednesday and my regular doctor said if I wanted to see her again I could just call and did not need to blow out my eye to do that. We both laughed. She said there was too much blood she could not see that area so she injected a med into the eyeball to stop the bleed and I return in four weeks for the dye scan and perhaps a laser treatment to try and seal off the bleed. She said hopefully I would return in four weeks and I would be perfect for the test. I commented that I thought I was perfect whenever I came in for a visit. My wife put her hands out to show the size of my head and ego. The doc got a look on her face that said "Oh boy, is this guy full of himself." I said, "What?" She looked and said "Oh yeah I forgot you can see out of your right eye and you saw my face." We laughed heartily and kept on going. In the meantime, I walk around looking like a pirate because the light in the background is like looking through what appears to be swamp water causing disorientation and nausea.

I am reminded of how fragile we are and that this all started in my eye so many years ago and that I continue to deal with the ramifications of ocular melanoma in so many different ways.

Get out and see your eye doctors and stay on top of what is going on in your eyes!

Peace be with you all!

Good reading

A woman that I have as a spiritual companionship person at my current church brought me a book she had read recently. She said it helped her understand her dad's death and hoped I may be able to read it and find some nuggets of wisdom. It is entitled, "When I Die: Lessons from the Death Zone" by Philip Gould 978-0-349-13911-1    I read it yesterday after noon and found it to be a very good piece about the man;'s experience of being diagnosed with cancer and his subsequent emotional and physical health as he realizes he is dying. I would recommend it to anyone who is recently diagnosed or who is caring for someone with cancer.

Options.....

I have been doing a lot of reading on Ocular Melanomas and their treatments. I have leaned that the disease is extremely rare and very dangerous. When I had the nevus in my eye that was being monitored 12 years ago, only 1 in 8,000 people who had the nevus had it develop into a melanoma. Of those that did, 80% where choroidal melanomas as was the one I had. At the time, the radiation therapy versus the removal of my eye gave the same long term statistical possibilities. There are approximately 1200 new cases of ocular melanoma in the US each year. Of those treated early on, 50% in a 12-15 year period the melanoma metastasizes and is generally found in the liver first as it spreads through the blood system and not the lymphatic system as does skin melanoma. Statistically I have hit all those markers as time progressed.

I have learned not to read anything that was published before 2015 as it is all out of date today. While the medical community classifies ocular melanoma as an orphan cancer, since it is so rare, there are very few clinical approaches or trials in response to it. Untreated metastatic melanoma has a survival period of 6 months. Given new advances, the survival rate is increasing and there are some patients who have been progression free out to five or more years. Current therapies do not cure the disease but can stop progression or shrink tumors and so that is the goal of treatment. Perhaps I can last long enough for another treatment to be proven and then another. Perhaps not and that will have to be the reality of this situation.

The best hopes are currently being seen in the immunotherapy model and that is what the UM Melanoma Clinic is providing me at this time. If this course does not work or becomes intolerable for me, there is another course of combined immunotherapies that can be tried but it is currently much more difficult to handle. I also have the TACE procedure that can be tried where my liver is flooded with chemotherapy drugs in an effort to slow progression. My first treatment in this manner is Friday July 21, 2017.

There are a couple of unique approaches that are being researched at this time. One is to remove some of the stem cells from my body and have them reprogrammed based on a line of healthy cells that have become cancerous. . These would then be replaced in my system in an effort to have them replicate normally and destroy the current tumors cells. This has been done successfully with some cancers that are similar to the ocular melanoma cells. The second approach is to add drugs to my systems that may help direct the immunotherapy drugs in their effort to unmask and restart the cell death process that is shut off in certain cancers.

I have talked to Mary and let her know that since this cancer is so rare that I am willing to have the doctors consider any of these two approaches if available. Even if it just adds to the bed of knowledge about this cancer and its treatment for future patients. I have tried to spend my life in service to others and am not opposed to spending my last days trying to help those in the future with this kind of research. We will have to see where this all leads.

In the end, I know as my mystic friend Julian of Norwich says--All will be well and in the end all things will be well.

Praise God in everything!

What a Whirlwind of a Week!

As you know, I was released from the hospital on July 6th. So this week has been a whirlwind of doctor appts and meetings with good friends.

On Tuesday July 11th I met in the morning with my primary care physician and the pharmacist who works for her office. We went through a meds check and eliminated some and added some. Primarily concerned about blood sugar levels and the impact the high level of prednisone may have on them. We adjusted my insulin and added an additional oral med for dinner time. My blood sugars have been all over the place--high and low. We don't want to repeat the diabetic coma I had a few years ago so we are keeping a close eye on it. Eliminated a high blood pressure med that causes dry cough which complicated the pneumonitis observations. However, now I have to routinely check my blood pressure and have a new med to take if it gets high to prevent strokes. Just another thing to have to worry about. LOL!

Tuesday afternoon I met with the oncology team and had blood work done and a lengthy discussion with the nurse practitioner. The high levels of prednisone will prevent the continued infusions of iummunotherapy drugs. I have to go through a planned taper period to get down to 20 mg of prednisone a day before we can resume the treatments. The end looks to be near towards  the end of August to be able to restart. Blood tests show that I could be moving in the direction of hypothyroidism which is a complication that generally at some point flips to hyperthyroidism. They assure me they have drugs to manage that complication. In the meantime, I just keep taking the steroids and antibiotics to keep the my lungs clear. They scheduled a rapid CT scan for Friday and sent me on my way. They reminded me that we are still set for surgery on Friday the 21st for the TACE procedure where they will flood my liver with chemotherapy drugs.

I have an appointment on Wednesday with my regular ophthalmologist who is treating the bleeding in my left eye as a result of the radiation treatments 12 years ago. I go to see her and she examines my eye and gives me a clean bill of health. Everything looks good and she says come back in 6 months. I discuss with her the metastatic melanoma and she tells me she did her post doctoral research for the NIH on Ocular Melanoma and is completely up to speed on the protocols for protecting my eyes from the immunotherapy. I pass that info on to the UM Oncology team and they are glad to have her on board with the treatment and observations.

Thursday night we had a wonderful dinner at Joe Muers on the River in downtown Detroit with some old and very good friends--Mark and Ann Houska. It was a wonderful meal with excellent company. One of the things I am finding that has been most helpful in these times is to connect with good friends! They also surprised us with four tickets and a parking pass to the Tigers game on Sunday afternoon from their season passes as they headed out of town for the week. We were speechless and grateful for their generosity.

I got up Friday and went to Chris' house to help receive a new dryer for him and reinstall the gas line for it. I took a break to go get the CT scan and was back in an hour to complete the job at his house. When I was finishing up around 2:00 pm I bent over to pick up some tools . When I stood up the inside of my left eye again looked like an atomic bomb had gone off inside. Another internal bleed was occurring. I called my ophthalmologist and she got me in at 3:10 in her office in Ann Arbor. There was so much blood in my eye, they could not tell exactly where the bleed was so they planned to do a dye injection and photographic analysis to pinpoint the bleed. However, after talking to them about my earlier CT scan they did not want to tax my kidneys with more dye. Particularly since I have lost a portion of the right kidney. So we are scheduled to have that test done this Wednesday morning. In the meantime, I have a patch over my eye and look like a pirate. There is so much blood in my eye that I am virtually blind in it and the patch keeps the light from coming through and causing me to get nauseous from the floating black strands of blood. So much for a clean bill of health!!!!! They tell me that these kinds of bleeds occur but are generally very rare after the radiation treatments. One more thing that I hit on in the rare category. Mary is beginning to think I am just a genetic wimp and susceptible to almost anything that can go wrong. I suspect she is right.....lol.

Saturday night we had our good friends Andy and Lori Malm over for late night cheese, crackers and a glass of wine (water for me!) We truly enjoyed catching up with them and all that is happening with their family.

Sunday was a blast in that four of us went to the Tigers game only to see them win in the 12th inning with bases loaded and a full count. They walked Miguel Cabrera and we won the game on that walk. That one pitch is as good as a baseball game can get and we were there to see it. Mary and I went to dinner with Gary and Debbie Ley and  thoroughly enjoyed the evening with them and their daughters Marissa and Erica. The girls have grown up so much and  are so delightful. Gary has retired and it sounds like he is keeping himself busy with a wide variety of activities. Debbie continues with her realtor job and as usually has wonderful stories to tell.

So after all that, another scan and surgery this week along with my brothers and sisters coming in to spend some time with us, it looks like another busy week to come.

God is good all the time.........feel free to stop by anytime. My schedule is so crazy that it is easier if you just call and see if we area around to stop for a while. Changes come so quickly it is hard to set firm times to meet. I love seeing you all even if it is through the one eye only!!!!!!

Emotions Part II-Funerals

Over the years, I have had several priest friends who have preached at the funerals of their family members. I always was amazed at the strength and faith that it must have taken to do those homilies. How do you keep the flood of emotions in check? Some did and some didn't and I guess that is the reality of it all.

My mother, Dolores Leach, died on July 1, 2010 at the age of 92 years old. I had left that morning with a youth delegation to El Salvador and my wife Mary was with me. During our orientation meeting at the Peace Center in Suchitoto, Mary got up and walked away and went into one of the bedrooms. She had her phone and was talking on it. When she came back, she told me that my oldest daughter, Michelle, had called and said Grandma Leach has died that morning from a stroke she had during the night. They all wanted to talk to me about funeral arrangements. I would be in El Salvador for nine days before I could return.

I called Michelle and got the details and then talked to my brother in New Jersey. They had spoken to the local funeral director in Yale, Michigan where my mom's plot was next to my dad's plot. Dick Kaatz was the director and I knew him well as his wife had been my baby sitter when I was growing up. (A whole other story about being baby sat in a funeral home environment!) I had grown up with all his kids. I had my brother call Dick back and tell him that I would be back in nine days and ask if we could delay the funeral until then. Dick was most accommodating as he had several other funerals that week. He spoke to the young pastor at Sacred Heart Parish in Yale and made arrangements for the Mass and for me to preach at the funeral.

While we were in El Salvador, a young man was killed in a gang related drive by shooting. The family had no money to pay for the funeral so we collected funds to give to Sr Peggy O'Neill to pay for the young man's funeral. Sr Peggy told us a tradition of having the family sit with the deceased for nine days before the funeral rites were celebrated. I felt as though that was a sign of approval that we would wait for nine days to bury my mother back home.

When I arrived home, we spent the night getting cleaned up and headed north to Yale the next day for the funeral rites. For so many days my mom had been flooding through my memories. My relationship with her was always very strained but I tried to remember the good she had done in the world. I remember choking up during the Gospel reading and wondering if I could ever get through the homily. While I had wide swinging emotions, I was able to speak well of her and trust that she was in the hands of a God Who I knew she loved and Who loved her. Afterwards, my family and cousins all commented on how delicately I had treated my mother and how they felt they could not have gotten through what I had just done.

I would however, not know how difficult it was to preach for a loved one until my mother-in-law Colleen Ureel passed away this year on March 10, 2017. Her death was unexpected after a hard battle with influenza and pneumonia.  Until her time in the hospital, I had essentially been her caregiver as she moved into our house and her husband Ken moved into assisted living here in Canton. It was hard to watch her decline and slowly slip away. The family all asked me to help plan the funeral and to preach at the service. I started out saying how I was not trained in how to preach this kind of homily but said I was inspired by Colleen who always said to just pull up your pants and get on with life. So I did and I remember touching her casket at the end and whispering, "I will see you soon." It was two weeks later when the scans were completed to identify the current Stage IV Metastatic Melanoma that was invading my liver and chest. When we went over to tell Mary's dad about my condition, the man just looked at me and said, "Can we change places?" I told him we would have to ride out whatever happened but that if I went before him then Colleen and I would map out some living quarters for him. How quickly the table of life can switch on us.

On July 2, 2017 the day before I entered the hospital for the second time this month, we took Colleen's ashes and buried then in the little cemetery by their old home in Metamora, Michigan. I read the prayers of committal and wept through most of them. As I choked up, a bee stung me in the palm of my right hand. It really hurt and later the family told me it was Colleen's way of just saying, "Come on Don, pull up your pants and get on with life!" I suspect she is going to have to keep reminding me of that over and over again as the future moves forward.

Recently, a priest friend of mine filed his funeral plans with the Archdiocese of Detroit (something they are all asked to do ahead of time. Imagine that!) He asked me if I would be willing to preach at his funeral for him. I said I would be honored and glad to as long as he promised that if I went before him he would do the same at my funeral. We both chuckled. Now that chuckle has a different and fundamentally deeper meaning than it did then--we never really know what the future holds and we need to rest in the hands of loving and mercy God.

Last Friday, the day after I got out of the hospital, I attended the funeral of an old friend from Ann Arbor--Michael Murphy. Mike was a social worker who headed many of the mental health functions of Washtenaw County. I had the great honor of working with him on some mental health issues and the development of the first Critical Incident Stress Debriefing teams for first responders in Washtenaw County. Mike was a gentle soul who was involved in the thick and thin of life. He brought joy and happiness everywhere he went in his quiet gentle ways. Throughout his funeral, I recalled how he had appreciated my diaconal ordination and celebrated my ministry with me. I always thought he was more of a deacon at heart that I was as an ordained deacon. He will be missed by so many. However, I am reminded of all the good he accomplished in his short lifetime--69 years. If I am remembered only a tenth of the degree to which Mike is remembered, I will be called a good and faithful servant. So at the end of this ranting about emotions all I can say is rest dear Michael-you were a good and faithful servant. May God welcome you into paradise accompanied by all the angels and martyrs!!!!!

Not Really Sure What to Call This One--Emotions--Part I

I have to admit that this recent diagnosis has brought up many emotions and thoughts. One thing I know is that emotions whether they feel good or bad can grab you at any time. Since the first day I heard I had choroidal melanoma in my left eye emotions have been sneaking around inside of me.

I was first diagnosed with the eye cancer in October 2005. I was set to go on a Franciscan Study Pilgrimage with my old friend Fr. Murray Bodo, OFM who was one of the study leaders. I told the doctor that I was set to leave in a few days for Italy for a month. I asked what he thought I should do. I remember him saying that if it was him who had this diagnosis, he would stay and have the radiation to kill the tumor. I don't think I knew then how deadly this form of cancer can be. I did stay and had to send word to my friend Murray in Italy that I would not be coming. The Franciscans were very warm and understanding and returned all the funds I had paid for the trip. I was lucky enough to be able to attend the next year and Murray and I enjoyed catching up after so many years.

While I was in Assisi I remember going to the tomb of St Francis of Assisi and praying there. After the last year with the cancer and having retired from the police department and trying to resettle myself as a pastoral associate and 10 years of diaconal ministry, I remember myself feeling overwhelmed and tired. I prayed to St Francis to help me come to terms with all of the stress. I reminded him that he was a deacon and that he should understand. As I walked up from the tomb area, there was a mass in English going on. The Deacon was up reading the Gospel where Jesus says to let ourselves rest in Him because His burden is light and easy. Take Him on as the yoke and all will be well. I was astonished at the quick response I had received. Well today when I went to mass I was again a little overwhelmed with the diagnosis and the two recent trips to the hospital. Again the same Gospel was read and it took me right back to remembering that Jesus is our yoke and when tied to Him we can bear all things. He never promises that it will go away but the it will be light and easy.

Praise God!

Pneumonitis

Monday, July 3, 2017 around 3:00 pm I started to experience de jevu. The overwhelming fatigue caused me to lay down for a nap. I woke up around 5:30 pm with a cough and low grade 99.5 temperature. I felt like you do when you first start to get the flu--I call it lousy. The coughing was getting worse and the temperature crossed the 100.5 threshold to call the oncology office at UM. I was told to head for UMER and be evaluated. By the time I arrived, the cough was so steady Mary asked if I had coughed out a lung and my temperature was at 101. The triage nurse had my name and she got me right into an isolation room with those cute little masks on. I needed to settle in for a night of IV fluids, chest x-ray and multiple blood pokes for a variety of tests. By now, I was sweating enough to have soaked the sheets on my gurney and needed them to be changed. Calls were made to  my on call oncologist as my regular one is on vacation for the holidays which I was glad to hear he was taking time off to enjoy himself. The call was to again admit me and observe what was happening. Since this was only a couple of weeks away from my last episode they were now getting concerned it was a possible side effect of the immunotherapy.

At 10:00 pm I was moved to a single room on the 6th floor for observation. The cough and temperature came and went often. I was told that all of my tests were negative and that the chest x-ray was clear. Tonight I would again soak my sheets in sweat and feel my chest tighten as I coughed. My pulse ox level was hanging n the 90-91 range and they wanted it to be at least 95 so I was put on 2 liters of ox. 

The next day was the holiday and I was struck by how quiet it was around the hospital. Around midday the Resident came and said the oncologist was concerned about a condition called Pneumonitis which had been identified as a possible side effect for 3% on immunotherapy patients. So an IV drip of 80 mg of prednisone was started and an antibiotic regime to hit and prevent any further infection. I have since read several articles on this side effect and it fits my symptoms to a T. Within 3 hours of the IV starting I stopped coughing and began to feel better. My fever broke by morning. I then spent two more days being observed and working with a breathing device to clear my lungs to get my pulse ox levels up, I finally passed the tests on Thursday morning and was sent home on my birthday to celebrate with my family. It was so nice that the kitchen staff sent me birthday cards signed by them all on my birthday. The doctors and nurses all came in and congratulated me and wished me a happy birthday.

I came home and got cleaned up so that Mary. Michelle and Christopher could drive me to Grand Rapids to celebrate a birthday dinner with Megan and Brian. I had a wonderful Polish sausage and a single Tupelo draft beer for dinner and then road home. In the car on the way home I had a chance to read all the wonderful comments so many of you sent me for my birthday from all over the world. I am such a blessed man!!!!

The plan going forward is to meet with my oncologist next week to discuss the Pneumonitis treatment plan and how it will affect the immunotherapy schedules in the future. I understand the Prednisone should not interfere with the TACE procedure set for July 21, 217. Hopefully after a cooling down period we can restart the immunotherapy.

Transarterial Chemoembolization

We met with Dr Lao today to review the results of the routine CT scans after three courses of immunotherapy. The scans show that the tumors in my liver on average have doubled in size and a new one has been identified. The tumor in my chest has shrunk and presents a few questions that need to be answered. Dr Lao wants to try the procedure called Trans-arterial Chemo-embolization. Essentially they will enter the arteries of the two lobes of my liver through the artery in my groin and introduce radioactive/chemotherapy drugs to the enclosed liver in an effort to kill or shrink the tumors. He has had some success with this procedure with other patients having metastatic ocular melanomas and he believes I am a good candidate. Again no cure here but hopefully the slowing of growth and some shrinkage for a longer life expectancy.

The whole process takes three trips to the hospital. The first one is with injected dyes to map out the vascular system of each lobe. Then a separate infusion for each lobe. Each takes a day in the hospital and a day of observation before I can come home. It also appears that if I get good results the procedure can be repeated several times to try to get further shrinkage in the future. We are currently waiting to see what the doctors' schedules are like to get started. I suspect I will have the immunotherapy session this Wednesday and then they will be suspended for the TACE procedure and then be resumed afterwards. Sounds like my summer medical schedule is getting booked up...

Had a great time in Cleveland this last week with the kids from Chris;' Youth Group at St John Neumann. Wonderful kids who are excited about their faith and the good works their faith calls them to do.

Peace, Don

Viral Infections and Cancer Patients

So when you are a cancer patient on immunotherapy, fevers and vomiting are generally not good signs. They want you to come to the hospital to make certain the treatment is not attacking any vital organs. So the wonderful staff at UM ER treat you like a general admittance and do all the necessary scans and lab work to rule out any specific infections. You are then placed on observation until your temperature subsides. This is how I just spent the last two days and am now home resting after a routine viral infection.

I had my routine scans on Wednesday and so while in the hospital my Oncologist came by to check in on me. He told me he had checked the scan results. He saw considerable tumor growth in my liver but no other new sites or growth outside it. He is considering a few options for directed treatment to the liver along with the continued immunotherapy. We will discuss these options on July 5th at my next infusion.

I can only say thank you to all of you who are praying for me. I enjoy your comments and notes on Facebook and text messages.

Peace and all good......

St Kizito Medical Center Report 2009-2017

St Kizito Medical Center when I first saw the building project in 2007.

St Kizito Medical Center as it was in June 2017.

Infusion Number 3-----

It is hard to believe that three weeks have gone by already since the last infusion. We are finally beginning to get the daily routine sorted out for these days. Blood draw, doctor visitation and the infusion. Each section has its own set of protocols to be accomplished. As I look around and see the literally hundreds of other patients who go through this process I am amazed.

You always know something is up when the nurse who is about to draw your blood goes, "Umm that doesn't seem right." She spends more time on the computer and then says, "Excuse me but I need to look into this. I have never drawn blood for this kind of a test before." She then walks away.

In waiting for her, another older woman enters the drawing cubical with another nurse to draw her blood. The nurse comments on her outfit and how cute it is. She then looks at me and says, "What do you think?" I look and say say, "Yes it is cute to this perfect stranger,"

The woman and the nurse talk about her history and diagnosis and she says she never expected to make it this long. She was diagnosed nine years ago and has been coming here ever since. She says she is feeling fine and she guesses you never really know what is in the plans for you. The conversation goes on and she mentions her daughter who is leaving for Africa with her church as a missionary soon. I mention that my daughter is coming home tomorrow from Africa after a month. We are looking forward to her being home. She says her daughter is going to work with young victims of human trafficking. I tell her about the House of Jjajja Don in Kampala Uganda and our work with young women rescued from the commercial sex trafficking in the slums. She is amazed and says her daughter is going to Uganda to work. We laugh and say God must have wanted us to connect today. We exchange names and contact info so our daughters can connect in the future. I look up and see that my nurse is back, She says, "Don't mind me I have been standing here fascinated by the conversation you too have been having." Both nurses are amazed. I then find out my one test was ordered in error and no one knows why it would be necessary and it is removed from the list of tests. The lady and I know who made the wrong entry which allowed for me to be there for a longer period of time and that allowed me to meet her and have our conversation. You just never know!

Mary and I go to meet with the doctor. I say I am feeling fine. Only reaction is a small rash on my back which seems to be controlled with a skin cream. Just a cheap excuse for getting a back rub I say! We then hear some more genetic testing info that confirms even more so that the metastasized melanoma is the one from my eye. Most skin melanomas have a gene defect in the BRAF gene. Occular melanomas do not and I don't have that one in my test results. Occular melanomas on a 50% basis have a defect on the GNAQ gene which I do have. So now we are pretty sure it is the rare ocular choroidal melanoma that has spread through out my system. Once again we hear that is is an extremely rare cancer and that they really have no known protocols for any effective treatment. The one I am getting is their best hope for a response with 13% of patients having a positive reaction to the drug. The Dr says we will keep you on this course as long as you can tolerate it and the tumors show no further signs of growth or spread. If they do then we can move to a different course that has more side effects but they really don't know if it will be any better in the long run. Mary and I leave and start to laugh with each other and decide that as usual my life seems to be a statistical crap shoot and we will just have to play out what ever the odds are?

I have my first set of scans next Wednesday to see if there is any change in the tumors. We are told that quite often there is a "flare" in the tumors from the initial treatments. The tumors may appear larger and more aggressive. But not to worry as that is expected. The second and third scans after three week courses of treatment will be better indicators of the tumor reactions as long as I can tolerate the treatment. It all seems to be a SWAG but I guess I accept that and hope the treatments work. In the meantime, we have to go on with living life each day.

I cannot tell you all how much I appreciate the prayers, calls and well wishes you have sent to me and my family. In between my naps, you give me hope and courage and for that I am eternally grateful!!!

Love Letters

My good friend Terry J stopped in last week and we talked for a good two hours. She mentioned something about writing a book, I laughed and told her another friend Kim had suggested I write a book about the many lives I had contact with through my ministry. Terry agreed and she told me about so many encounters we had over the years and the things she had learned from me. I told her it would be hard for me to write since so many of the things I tell people are relative to what we are speaking about in their lives and not just academic or theoretical ideas.

She said she had told her husband that she needed to write me "A Love Letter" about how I had impacted her life over the years. He suggested that she do it and so she told me she was going to. She plans to ask others to do the same thing. I think it would be good to hear from people about how God has affected their lives through my ministry. Perhaps a book would come from the experiences. However, as Terry said one of her friends said not to have me write a book because I know so much about them all. I promised not to reveal any personal secrets!!!!!!

The idea reminded me of a book I have often referred cancer patients to: "Lessons from the School of Suffering." It is a book written by a young priest from Cincinnati who was dying from renal cancer. He tells about the lessons he learned in his last two years as he fought the cancer that had entered his life. I have gone back and read it again from a new perspective as a cancer patient. Many good lessons to learn from his work.

Who knows what God may call upon us to do in our times of suffering?

Blog from Erin Cummings

My dear friend Erin Cummings, Founder of Mittens for Detroit, was one of the people I told about my stage IV Melanoma diagnosis early on. Erin recently went through surgery, chemotherapy and radiation treatment for a cancer that was discovered last year. I spent a long time on the phone with her as she was heading to a radiation treatment. She subsequently wrote a blog entry on her site which I would like to share with you......

Knock-knock. Hello? Oh. It's you.

Journal entry by Erin Cummings — 5/14/2017

I love the movie "Clue." 

It's one of my favorite movies. I love everything about the film. I love how whimsical names like "Colonel Mustard" and "Professor Plum" and "Miss Peacock" seem pedestrian when brilliantly portrayed by Martin Mull, Christopher Lloyd and Eileen Brennan. There's a scene from Clue that came to mind as I was reading the latest on Twitter and thinking of my little "pre-existing condition." 

The doorbell rings. The door opens. There's a person in a bellhop uniform who immediately starts tap dancing and singing, "I--am--your singing telegram," when a gunshot kills her on the spot. The genre of the film and the timing of the shot actually makes this a comical moment. It just works so well. Can you imagine that? Someone showing up on your doorstep that you don't want to see and you just shoot them and shut the door? Imagine that the person wasn't a person, but a thing instead. Like... your student loans show up on your doorstep and you shoot them and shut they door. Boom. Gone. Done. How lovely would that be?

The thing that made me think about this moment was the expectation of a "surprise" guest. You could anticipate that person's next move and prepare for it. You could have a tray of freshly baked cookies for a friend or a loaded gun for a foe. You could outsmart them by the knowledge that they were coming. No surprise. No scramble. No pretending that you weren't spending the day in sweatpants, house in disarray, binging the latest Netflix series. 

But I guess that's how surprise guests work. They surprise you. They show up out of the blue. They come over unannounced. They just assume that you don't have things going on like... oh, I don't know - LIFE. This is how cancer is. I used to think that cancer was this terrifying dragon who breathed fire and required a knight in armor to be defeated. I don't think that way anymore. Cancer now seems to me to be the awful neighbor who does any number of things to make your life miserable. That neighbor who spies on you. That neighbor who calls the cops when you play your music past 9pm. That neighbor who gossips with other neighbors or builds a fence on your property line or poisons your tree or steals your mail or fucks your spouse or shoots your dog - your neighbor is just plain awful. So, if you have the means, you move. 

You do what you think you need to do to get away from this really shitty neighbor. You liked where you lived but you realized that life with this neighbor was not a life. So you went to great expense. You started researching - real estate agents, neighborhoods, etc. You put a part of your life on hold to make this huge, dramatic change so that this horrible neighbor would go away and wouldn't be able to disrupt your life anymore. And then...

Knock knock. 

Hello?

Oh.

It's you. 

Cancer has moved next door. 

My dear friend recently told me that his cancer had come back. I'll call him DD. He thought he had killed his dragon twelve years ago. He moved on. He dedicated his life's work to saving children in third world countries from atrocities. He was and is a man of God. And then, in a random screening, he got a knock on his door. He doesn't have long. Maybe a few years, at most, if the immunotherapy treatment works. They don't really know because it's so new. His wife is at a loss. She thought that they hadn't left a forwarding address and she doesn't understand how that neighbor tracked them down. 

I asked him how he felt. We laughed at the absurdity of cancer and the beauty of the white noise it creates. There's terribly horrid jokes that we cancer patients make to one another when others aren't around. They are wonderful. They are the kind of jokes that make cancer truly feel like a special club, without the guilt of privilege. They make me want to flash back to the 90's and make a shirt that reads, "It's a Cancer thing. You wouldn't understand." (it was a saying with "cancer" substituted for almost any other noun back in the day). 

I asked him if he had a bucket list and he told me the most wonderful thing. He said the one place in the world he once wanted to visit was a city he had now been to three times. He had done everything he wanted to do. He said that the only thing that made him sad about dying was the pain that he knew would be felt by the people he left behind. I said this to my therapist and told her that I was considering making a bucket list. She said that I already had. I vowed to go to Mexico. I'm going on July 14. I vowed to shave my head. I did that back in October. I vowed go on Dancing with the Stars. I'm working on it.... (cross your fingers).

I realized in my conversation with DD that we don't know when we are going to get the knock. And when the knock comes, we may not be ready with a gun to say, "fuck off, I still have things to do." We have to make a list. We have to decide what is important now and just start doing it. We can't live our lives with the idea that one day, we're gonna be a contender. If we do that, we will just end up in the back seat of a taxi saying, "I could've been a contender." (that's a Marlon Brando reference, in case you're confused). 

I keep saying I want to write a book. Well, where is the book? I keep saying I want to climb a mountain. Which mountain? I keep saying I want to be this and that and the other thing. Okay, so when? Why do my dreams only exist in the future? Why aren't they happening now? More importantly, why aren't I taking the steps to make them happen now? If I look at "writing a book" as a thing that will happen "one day," instead of a thing that I am working toward TODAY, it will never happen. And I'll get a knock on the door as I'm scooping up scraps of notes and no book will ever live beyond my mortal coil. However, if I write... and I write... and I write... Even if I'm never able to actually put those scraps together into a format that people will publish and print and bind and sell, my words will live on. Someone will find them and read them. Someone will possibly put them together and say, "these were the words of a woman who knew the knock was coming." 

I guess what I'm saying is that I know the knock is coming. I know it will come back. I haven't even finished fighting my fight. I am indulging in a brief respite from radiation called the "weekend," but I'll be back before the matador on Monday. However, after I finish my radiation and after I finish my Herceptin infusions and after I have my port removed and after I have my reconstruction surgery and after I finish my physical therapy and after my period comes back and after my toenails and my eyelashes grow back, I will stare at the door. I will put a chair in front of the door and a part of me will sit in it and stare at it and wait. I will wait for the knock. I already hear it. When I have a pain in my elbow, I wonder, "do I have bone cancer?" When I have sinus pressure, I ask, "do I have brain cancer?" When I have a headache that lasts longer than ten minutes, I ask, "should I get an MRI?" I think about the one cell that could be floating throughout my system. The one cell that wasn't poisoned, cut out, or seared by radiation. The one cell that just waits for that moment to knock on my door with a familiar curled smile. Maybe I'll die an old lady, quietly in my bed. I hope so. For now, I just wait for the knock. And I keep my gun loaded, whatever that means.

Blanket Seduction

Several of my friends from a local parish made a Prayer Blanket for me to use to remember I am surrounded by prayers. I sat in my recliner after infusion yesterday feeling tired and chilled. I wrapped up in the blanket and spent the rest of the night feeling comforted and warm.

I went to bed last night and wrapped up in the usual fleece blanket that I had. I could immediately feel the warmth of the blanket. My alarm went off this morning and as I got up I heard the blanket call my name and say, "You should stay right here with me." I turned off the alarm and felt the blanket crawl up my shoulder as I fell back to sleep.

An hour later, I woke up and thought I should get up. As I looked over the side of the bed the blanket crept up on my legs and back whispering in my ears, "Stay here old boy." I felt old and in need of some more sleep so I succumbed.

After another hour, I woke up and began to think the blanket was possessed as I tried to get up again. But it just kept calling me back. Once again I gave in. Mary sent me a txt message saying she had hives from her contact with the cat this morning and had to take a benedryl. She was getting sleepy. I wrote her back that my blankets were not letting me out of bed! She wrote back and said, "Rest, those Navy Seals are working hard inside you." I accepted that and feel back to sleep.

I am now eating breakfast which in reality should be lunch but I have no shame, Who knew that stage IV Melanoma would allow someone to succumb to blanket seduction so easily!!!!! I will have to look through my moral theology books to see where blanket seduction fits into the whole pictuer of life........

Second Infusion Day

The day started with the obligatory blood draw to check liver and cell functions before the infusion can begin. Mary and Megan accompanied me today. Megan acted as the note taker as we met with the clinical pharmacist and nurse practitioner. Lots of questions about possible side effects which I do not seem to have. A slight rash and tiredness is all we could really identify. A couple of liver enzymes high indicating liver damage but not extremely high. LDH, which apparently has been identified as a potential indicator of melanoma in the system, is higher than normal confirming the melanoma's presence. These two professionals spent about 90 minutes with us and answered all of our questions. Wonderful people!

Appointments were made for CT scans after my third infusion on June 14th. Luckily these can be done right at the scan center in Canton--one block from my house.

We moved on to the infusion area and the infusion nurse was able to get the IV in my right hand with only one try. Mary and Megan prayed over the Ketruda as it was brought it and then the infusion started. About an hour later, we were back on the road and off to Seva Restaurant in Ann Arbor to get a vegetarian lunch. It was a long day and it is was great having Megan with us as we walked through the various activities.

We have a long time friend who is a researcher at UM and she was able to come to the waiting area to be with Mary and greet us as we came out of infusion. It was great having you there Lydia.

Overall a very successful day. It it is hard to process how sick I really am with the way I feel right now. All your prayers and visits are paying off in that regard. Keep them coming!

An old friend of mine sent me a note to say that visioning is an important part of the fight. He said he envisioned PACMEN attacking his cancer cells. I told him my body is coursing full of fully armed. equipped and trained Navy Seals!!!!!!!

There have been many other thoughts and things to write about over the last three weeks but I will address these in other posts.

First Day of Infusion

May 3, 2017 is Christopher's 30th birthday and my first day of immunotherapy.  Who would have guessed 30 years ago. 

Met with the infusion nurse, social worker and then had my first infusion treatment. All went wonderfully well except for the three needle sticks that needed to happen. I am so very grateful to all the staff at UM Cancer Center who have been so friendly and helpful.

A huge thank you to everyone who called and left messages/texts/emails. Your love and concern has been most gratifying!

Mary told me to image the Keytruda as a spray of scrubbing bubbles going after the cancer cells. I told her I had a different image in my mind. I have always been amazed at the training and dedication of Navy Seals so this is my image of the Keytruda attacking the cancer cells.

Medical overlaps---how do they keep it all straight?

The insurance company has approved the treatment plan with Keytruda and it all starts tomorrow. I met with my internist and her pharmacist yesterday to look at what meds I have been on for my Diabetes II plan. A couple of the oral meds have potential conflicts with the cancer treatment and observation scans. So out with two oral meds and onto an injectable insulin. The treatment for the cancer can cause blood sugar spikes so hopefully the injectable insulin dosage can be modified on a short notice to respond to any spikes. I am constantly amazed at how the doctors/staff can look at such complicated situations and make sense of a treatment plan. Thank God for smart doctors!

Second Opinion

We met with the Oncologist at St Joseph Mercy Health and laid out the plan for treatment. He was able to answer several questions for us. Most that my PhD biomedical engineer daughter had thought of. So good to have her as a resource worker! He also brought up the MRI and CT scans to show us the details of the reports. He was very straight forward and concurred that the plan we have at UM Melanoma Clinic appears to be our best option at this point.

So it looks like I start the immunotherapy this coming Wednesday!

Thanks for all the prayers, contacts and visits you have all made to date!

Metastatic Choroidal Melanoma

For the last 11 years I have had annual CT scans, blood work and chest x-rays to see if the choroidal melanoma had spread after the radiation treatment I had for it. Well this year the CT scan showed several highlighted areas in my liver.

After several CT scans, MRIs, blood workups and a liver biopsy, I have been diagnosed with metastatic ocular melanoma with five tumors in my liver and a tumor in a lymph node next to my trachea. My lungs and brain are clear for the moment.

The plan is to start immunotherapy on Wednesday May 3, 2017 with Keytruda at the U of M Melanoma Clinic in Ann Arbor. There is no cure for this condition, but hopefully the treatment will slow or shrink the tumors. While only 13% of patients get a benefit from this treatment, there is the possibility of some clinical trials if I do not respond to this course of treatment.

We have so many friends who have responded with so many prayers and calls and notes. It has been overwhelming to experience this kind of love and care for my family and I. I plan to use this blogspot as a site to keep everyone up to date, so please feel free to log yourself in. I would love to have you send messages and prayers via this site whenever you can. Know that our home is always open for anyone to stop in and spend time chatting. We want to know what is happening in your lives too!

Peace and all good,


Deacon Don Leach