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........