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!