“I will share your joy and sorrow / Till we’ve seen this journey through.”
The quote above is from Paul Kalanithi’s “When Breath Becomes Air”, a book that I had been reading aloud to Peter over the past few weeks. I’d like to buy a thousand copies and give one to everybody I know. I highly recommend reading the whole book (including its wonderful foreward by Dr. Abraham Verghese). Before he died at age 37, Kalinthi was an up-and-coming neurosurgeon who also enjoyed wresting with literary and philosophical precepts. Upon his diagnosis with the lung cancer that would take his life in less than two years, he began writing this open-hearted, clear-eyed memoir about how to live when you know you’re going to die.
A 2014 NYT op-Ed by Dr. Kalanithi “How Long Have I Got Left?”
Prince Shaggy Knezevich is Peter’s #1 fan. He rarely leaves his side.
For now I just want everyone who loves Peter to know that he is comfortable. He is pain-free. He has been surrounded by more love than I would have thought possible. At times he has seemed ready to go. We have given him permission to go. But then last night he had a little bit of bourbon (we put some on a sponge near his lips and he sucked on it) and some pistachio ice cream. Although his eyes are closed, he is listening and enjoying stories. He knows that we are all here. And Shaggy rarely leaves his side.
Yesterday was Miles Davis. Lots of meatloaf. Morphine for Peter. A massage therapist for the rest of us. There are a lot of tears. But honestly, that’s only about 15% of the time. The other 85% is laughter and love. I hope it’s the same way at your house.
It is pretty cozy here. Peter’s window is open a bit so he can listen to the rain and thunder. Our English nurse is making sure everyone has a cup of tea. Or a gin and tonic.
I just realized that it is five o’clock. I think someone needs to make a grocery run. We’ve almost run out tonic and limes. I will be back.
Peter with his favorite Bug a few days ago.Saturday afternoon. Makers Mark for Peter. Betancourt Reserve Haitian rum for the rest of us. JC taught us how to say Cheers and Love in Serbian.Peter getting loved on by nurse Kightley who flew in from England and Nurse Juliette from hospice – the night shift angel.Peter’s sister Karen having some canine therapy.
A few months ago Macy handed me a book and told me to read it. She had ordered it after hearing a Ted talk by the author, Nora McInerny, whose 33-year old husband died in 2014 from a brain tumor just like Peter’s. Nora has a podcast called “Terrible, Thanks for Asking” and her book is called “It’s Okay to Laugh (Crying is Okay Too). We don’t know Nora personally but we are very grateful to her for giving us permission to both laugh and cry over the past several weeks as we stumbled our way along a similar path.
https://www.amazon.com/Its-Okay-Laugh-Crying-Cool/dp/0062419382https://itunes.apple.com/us/podcast/terrible-thanks-for-asking/id1126119288?mt=2He is Still Kickin!
Here is a link to the nonprofit Nora started in her husband’s memory: Still Kickin. This is the source of Peter’s Still Kickin T-shirts and the title of the original blog post here.https://www.stillkickin.com
Peter had a very rough night on Thursday. Late at night, he appeared to be in a very deep sleep, his vital signs were very low, and he was unresponsive. Pastor Megan joined us before dawn and around 5 am, we woke the kids up to be with him. Macy and Eli and I, with my brother and Pastor Megan, spent a few hours at his side, taking turns putting our hands on his heart. His heartbeat was slow and irregular. He was breathing only five times per minute.
You might think you know where this is going, but you’d be wrong. At about 7 am, after a few hours of this deep sleep, he rallied. His vitals returned to normal and he opened his eyes and looked around at all of us and asked if anyone wanted bagels. Then he talked about pastrami for awhile (where CAN you get a good Rueben in Miami?). When the day nurse arrived and greeted him, he told her that he felt great. We were flabbergasted. I sent the kids back to bed.
The nurse told us that if he asked for food, we should only give him ice cream, pudding, and other soft food. Peter had other plans. He has had multiple servings of pistachio ice cream, as well as four croquettes, a fried egg sandwich, a few pork rinds, and at least three Oreos. Shaggy jumped up on the bed and sat on his chest, intent on sharing the croquettes, and Peter obliged. Occasionally during the day when Peter appeared to be fast asleep and oblivious to everything around him, he would suddenly ask a question or make a comment related to our conversation. He is always listening.
He’s also asked about people and things in the room that only he sees, like “who are those people over there?” I told him they were his fan club and he seemed satisfied with that explanation. A few minutes ago he referred to pie charts and calculations and gestured toward the wall. I changed the subject because I hate math, especially invisible math. There is a handle that has been hanging over his bed for the past several months that he could grab and help pull himself upright. Suddenly, he is fascinated with the handle. Over and over today, he has been twisting it like a fidget toy and then letting it unwind, enjoying the nurses.
The hospice nurses have been fantastic. Skilled, compassionate, and kind. Peter has teased them and flirted and charmed all of them. I really don’t know what they see in him.
Thursday morning sharing croquettes in bed with Shaggy.Thursday early morning visit from Pastor Megan.Peter’s fidget handle, UM turnover chain, and Serbian flag.
Prince Shaggy Knezevich after his spa day. He likes to run down the hall and jump straight into Peter’s bed. Peter enjoys this sometimes. Not always. Shaggy does it anyway.Peter napping in the (air-conditioned) sunshine.With John Smith. He says Peter got him through law school. Peter says John got him through law school. Tomato, tomato.Would you wake up to see these smiles? Clinton Payne and John GrahamPeter and David.
Hello world. When I began this blog, I planned to update it more often to share how Peter was doing. I didn’t realize how hard it would be to write honestly about the winding down of his living and the approach of his dying and then to share it with the world. But I only know how to write honestly, so here it is.
He has been relatively stable for the past month or so but often had pain when we left the house. He became uninterested in his phone and computer and started to sleep more and talk less. Although we rented a van that could accommodate him in his wheelchair, travel often led to pain so trips away from the house became less frequent. For the past several weeks the only time he has left the house has been to attend church on Sundays. His friend John Smith (from law school days) came from Michigan to visit Peter this past weekend, and we were able to introduce him to our welcoming and nurturing UCC church. He enjoyed the heavenly music and a thoughtful sermon about why the Old Testament is still relevant to our progressive faith.
Peter is now heavily sedated due to seizures. Prior to his diagnosis in February 2016, he had only had “absent seizures” – a few seconds of being unable to communicate but no physical distress. He was put on anti-seizure medication then and has taken it every day since. After 2 ½ years, we did not expect him to seize, so we were taken by surprise when he had a grand mal seizure on Monday afternoon. We called 911 and he was transported to the hospital but after the seizure ended we decided to come back home rather than have him admitted to undergo scans and tests. After all, we know that pressure on his brain from growing tumor is what caused the seizure. The bad news is that it takes awhile to recover from a serious seizure and the patient is often confused and disoriented for a few hours or even days. The good news is that Peter woke up in the hospital thinking George Bush was president. We aren’t sure if he meant George Herbert Walker or the other one. Although this worried us a little, the family decided not to tell him he was wrong. Considering what was happening in Helsinki that very day, it seemed like a blessing that Peter was still in the 1980’s. We hoped that the seizure was a one-time thing, but hospice offered 24-hour observation so our family could get some sleep. We all had a quiet night. Peter still thought Bush was president and the rest of us wished he was.
Tuesday Peter spent the day at home in bed recovering from the seizure. His eyes were closed most of the day and he appeared to be sleeping deeply without pain or agitation. Fortunately, he woke up around dinner time to enjoy a Texas BBQ of ribs and baked beans home-cooked by our friend John Miller. Unfortunately, he also remembered who the president is. He soon went back to sleep, and again, was watched over by a hospice nurse overnight so everyone else could sleep.
Wednesday morning I woke up expecting another quiet day of recovery, but he had a second seizure at 7:45 am and a third one around noon when I was giving him his medications. I was unhappy with how the Vitas hospice team was responding and the lack of a plan to manage the seizures and reached out to a friend of a friend of a friend who works at the agency. They say the squeaky wheel gets the grease, and you can bet this wheel knows how to squeak. To make a long story short, by last night, Peter had some new medication and the best nurses available sitting at his side and I had the attention and direct phone numbers of some very important people at Vitas. We started giving him Ativan to prevent another seizure and he went into a deep sleep. We didn’t expect him to wake up at all last night because of the sedative. Our friends John Graham and Clinton Payne came over to provide me with some distraction and French fries. John went back to Peter’s room to whisper hello and literally waved a chicken wing under Peter’s nose. Peter’s eyes opened and after a minute or two, said he would like some ice cream. He ate an entire bowl of pistachio ice cream (with his pills mixed in) and then asked for a double espresso. After a short visit with John and Clinton, he was able to call his mom to wish her a happy birthday and then settled back to sleep until morning (the espresso notwithstanding).
This morning, he woke up to have some breakfast (bacon is a great incentive) and went back into the deep sleep. The most important thing is to keep him comfortable and prevent more seizures, so he is now getting regular doses of Ativan around the clock. As a result, he is in a deep sleep. He can hear us and occasionally opens his eyes and sometimes answers our questions. He Pasta is on the menu tonight and I am hopeful that he will enjoy it with us. We won’t discuss politics at all.
I don’t know if he will be able to go to church this Sunday but our wonderful pastors Laurie and Megan visit him every day. Peter has a special bond with each of them. He has a hospice nurse in the room with him at all times, and Macy and Eli are in and out, trying as best they can to live somewhat normal lives during this very abnormal time. Macy is working at a restaurant in Aventura and will resume classes at Miami-Dade College (psych major) next month. Eli started his first job a few weeks ago at Tommy Bahama in Dadeland and will be a freshman at Florida State in just a few weeks. My brother John has lived with us for the past year and a half and has been invaluable in keeping Peter comfortable and keeping me somewhat sane. (Yes, we have a lot of Johns in our life).
A nursing student named David came into our lives right when we needed him. For the past few months he has been coming every morning to help Peter. With his help, Peter was able to have a shower outdoors every day. He is caring and smart and funny and strong and I don’t know what we would have done without him. Forget cherubs with harps in the clouds – David is an angel.
Another angel is arriving in a few days. Our friend Michelle Kightley is coming from England to spend a few weeks with us. She is the best nurse on the planet. Peter and I agree that everything sounds better with a British accent, and we plan to do exactly as she says.
At the beginning of this message I purposefully used the words living and dying. Peter and I have been open and honest with our children and our community since he was initially diagnosed with this incurable illness. When he had exhausted all treatment options in the spring and decided to enter hospice care, we continued to tell the truth to eaand face the horizon together. Peter recently told our pastors that he would be willing to share his experience with others, not because he has acquired any great wisdom, but because we are willing to talk about a subject that few people want to discuss. Pastor Laurie’s sermon last week addressed the question “What Happens When We Die” and there have been two gatherings at church around the issue. Extra seats had to be brought in for both sessions, and the conversation was lively. It is clear that when the door is opened, people are eager to come inside and discuss their questions and concerns about dying. Perhaps I will share more about that in another blog post.
For now, this is where we are. Thank you to everyone who has helped us get this far. Our bench is deep.
The blog now allows comments. Govern yourself accordingly.
