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.