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!