Friday, September 1, 2017

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.........

Sunday, August 27, 2017

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.

Thursday, July 27, 2017

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!!!

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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.....
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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...........

Thursday, July 20, 2017

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!

Tuesday, July 18, 2017

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.