Hey all, Robin here. The following post has nothing to do with Michael’s writing. But over the past decade-and-a-half, I’ve grown to discover that Michael’s readers aren’t just interested in the books he writes, but also in us as people. As such, we’ve always been very open about our lives, and this post may come under the “too much information” category, so if you aren’t interested in such things, please skip this.
I should also note that it is VERY, VERY long. Until I finished it, I hadn’t fully realized how much I needed to tell this tale. I’m not a writer like Michael, and I’ve heard from many people that for some of them writing is often cathartic. It was in this case. And while I debated posting it, I decided that I put so much into this that I might as well send it out into the world.
Okay, so, on Thursday, January 9th, Michael and I got a text message from Michael’s sister, Colleen. This is something that immediately caught our attention. We live in Virginia and Colleen (and Michael’s brother Pat) live in Michigan. Michael and Pat have always been close (Pat even lived with us for six months after the death of their mother), but Colleen and Michael just have very different interests and we each have extremely busy lives. As such, the last time we had any real contact with Colleen was five years ago when Michael’s mom was dying.
Anyway, apparently she had been texting an old number (which she thought was Mike’s) and when no response came back she texted me – which for reasons I don’t understand -goes to both of us. The text said:
“Ok, so Pat is still in the hospital, he’s getting his 3rd blood transfusion.They have to check out more things with him.”
Our reactions were both the same/ I was at the warehouse doing a zoom call, mentoring an aspiring author, and Michael was in the living room of the cabin conceptualizing on “The Cycle.” And we immediately responded with “What the heck?” Although some of the letters were different.
Michael had talked to Pat at Christmas – and everything seemed fine, other than being depressed because a neighbor he’d been caring for recently succumbed to brain cancer that she’d been fighting for the past year. He seemed “down” but that was understandable.
Colleen went on to say that she had spoken to him four days earlier, and he seemed tired, but nothing more than that. But a neighbor came by Pat’s house, and Mansour thought that Pat looked terrible. He thought Mike’s brother should go to urgent care. Pat admitted to having some really bad nose bleeds, constipation, and a problem urinating. His solution had been to stop eating and drinking – you know, “nothing in, nothing needs to come out.” By the third visit from Mansour, Pat was so weak that he fell to the floor, and off to the urgent care they went.
Urgent Care transferred Pat to the hospital. Colleen’s report was that the emergency room determined Pat had (a) “hemoglobin issue” (b) backed up kidneys (c) gall stones, and (d) a hernia. She went on to report the main concern was his blood.
Given that Pat had mentioned bad nose bleeds, we didn’t think there was any serious problem. I was a bit more concerned than Michael, but he calmed me down by mentioning that Pat was well cared for and in a place that had substantial medical resources.
We tried to get a hold of Pat, but his cell phone must have been left at home because calling it didn’t get a response. When I called the hospital, they told me there was no phone in Pat’s room – which was weird, but I thought maybe that was because it would wake a patient who needed their rest. I asked about what was going on, and they couldn’t tell me anything. Colleen was his DPOA, and I wasn’t marked on the chart as someone who could get information.
The next day I called Colleen for an update, and she said Pat had gotten a bone marrow biopsy. This set off an alarm. I asked, “So they are suspecting leukemia?” She said yes. I asked what kind, but she couldn’t remember because once she heard “leukemia” all the other words disappeared.
At this point, I became “that person” who scours the internet for medical information, and yeah, I’ll admit I used ChatGPT (which was actually very helpful).
Generally speaking, the “top four types” are divided between acute (fast-growing) and chronic (slow growing)
- Acute Lymphoblastic Leukemia (ALL) including B-cell, T-cell, early T-cell precursor, and Burkitt-Type
- Acute Myeloid Leukemia (AML) including Acute Promyelocytic Leukemia and Myeloid Sarcoma
- Chronic Lymphocytic Leukemia (CLL)
- Chronic Myeloid Leukemia (CML) including Chronic Phase CML, Accelerated Phase CML, and Blast Crisis CML
Further research discovered rare versions:
- Hairy Cell Leukemia (HCL)
- Large Granular Lymphocytic Leukemia (LGL Leukemia)
- Acute Promyelocytic Leukemia (APL) (M3 AML)
- Plasma Cell Leukemia (PCL)
After plugging in some additional information – age: 73, gender: male, symptoms: nose bleeds and kidney issues, I came up with the diagnosis of Plasma Cell Leukemia. This is no ordinary disease. It’s described as very aggressive, incredibly painful, extremely rare, and has a terrible prognosis. In other words, it is resistant to treatment, and is diagnosed in its late stages, so survival is only a few months. Like all people who research things on the Internet and stumble across something truly horrifying, I was convinced this was what Pat had.
Michael wasn’t nearly as doom and gloom, and thought I was “jumping the gun,” which I’ve been known to do. Further research calmed my fears as PCL has an incident rate of 0.04 cases per 100,000 people which means less than 1 case per million. Given there are 345 million people in the United States that meant there are only a few hundred people who have this.
On the 10th, I got Pat’s nurse Amanda to add Michael and myself to his chart which would allow us to get information about his condition. I asked her if she could look through the data and give me any indication as to what “type” of leukemia was suspected. Her response was we shouldn’t speculate, and it was best to wait for the biopsy results.
Over the next few days while we waited, we kept in constant contact with Colleen and Pat. I told her we were preparing to come up, and she was surprised by this because over the course of those days Pat was, in her words “doing considerably better.” His kidneys were functioning, his urine was returning from tea-colored to yellow, and his appetite had returned. Both she and I had been concerned when the first few days he wasn’t eating at all and some days he was a bit “loopy.”
During this time we also learned that Colleen was working two jobs to make ends meet. We knew that Larry (her husband) hadn’t worked in years due to his own bout with cancer and a disability determination. So not only were we planning on doing what we could for Pat, but we wanted to help Colleen as well. Michael is 63, Pat 73, and I know Colleen is somewhere in the middle. Michael was outraged his sister was having to work so hard at her age so the plan was to take her aside, convince her to quit at least one of her jobs, and let her know we would replace her lost salary.
By Monday the 13th, I was itching to get to Michigan as my mind kept returning to the worst-case scenario. I wanted to be there when the biopsy results came in because if the news was dire, I planned to advocate for palliative care (focused on improving the quality of life by managing symptoms, reducing suffering, and providing emotional and psychological support). Michael reminded me that (a) we don’t even know if it is leukemia, (b) Pat sounded fine, and (c) he was surrounded by professionals who could take better care of him than us.
On Tuesday, I was returning from the warehouse to the cabin to have lunch with Michael, and Colleen called with news. The biopsy came back positive for leukemia. The oncologist gave Pat the news and went over a treatment plan while Colleen was at work, and no one else was in the room. The doctor wanted permission to start chemotherapy, and Pat said he needed to talk to his sister first. When Pat called Colleen and asked if he should start treatment, she said, “Are you kidding me, of course you want it – sign whatever paper they give you.”
When I heard this my stomach sank. I asked her what type of leukemia Pat had, and she had no idea. I started naming off a few of them, and none of them sounded familiar. I expressed that depending on the type, we might want to consider quality of life over aggressive measures. She gasped. “Oh, you’re right. I can’t believe I didn’t think about that!” I told her I would find out more and get back to her.
I called the hospital and got his nurse, Amanda, but she was in the middle of something and couldn’t pull up his chart, so she said she would call me back in 10 minutes. 10 turned into 20 and no call came in. I picked up the phone to call, and Michael told me “to settle down” because I was being a bit manic – and I must admit I was. Michael said, “Look, there is nothing that will be done today. We’ll get packed and leave first thing in the morning and be there by midafternoon. Then I told him that Colleen was waiting for a call back from me with the type, and he sighed then said, “Go ahead.”
When I got connected to the front desk of the floor he was on, they transferred me to Amanda’s phone. It rang, and rang, and rang. After 30 minutes, I called again on Michael’s phone. They said they would transfer me to Amanda’s phone, but I explained I was already on that line, and no one was picking up. I asked if there was anyone else I could talk to, and they put me through to the charge nurse, Cheryl.
Cheryl looked up Pat’s chart and she said, “You’re only down as an emergency contact, I can’t tell you anything.”
GAH!
I explained there had been a mistake because I had explicitly asked to be put on the chart to get medical information and Pat had approved the request. She said that was not what she was seeing, so she couldn’t help me. I begged her to go to Pat’s room and if he was awake he would reaffirm his consent. She told me he would be conscious because he was being prepped for a $10,000 chemo treatment that was going to be given in about 5 minutes.
Now I was really freaking out. Luckily Patsy (a cousin) was in Pat’s room at the time, and she, too, was questioning chemotherapy. She had recently lost her husband to cancer, and he had opted not to do chemo. While I was talking to Cheryl and getting Pat’s permission. Patsy was calling Colleen to try to convince Pat to wait. Now that Pat had once more granted me access to his medical condition Cheryl gave me the news I had been dreading. Yes, it was Plasma Cell Leukemia!
I went on to tell Cheryl that in that case, we didn’t want chemo. I explained that I didn’t believe that Pat understood the entirety of his situation as he wasn’t very knowledgeable about the various types. She said the doctor had talked to him for quite some time and fully explained everything. She went on to say that Pat was obviously lucid and able to make his own decisions. I agreed but also explained that I wasn’t trying to say he was incompetent, but I didn’t think he had given “informed consent.” I told her Michael, and I were getting in the car right now and we could be there in 10 or 12 hours. Could they please just wait until we arrived. While all this was going on, Patsy and Colleen (via Patsy’s phone) were talking to Pat and asking him to wait. And so he withdrew his consent.
I swear I felt like we had just dodged a bullet. I couldn’t believe they were going to start chemo just a few hours after diagnosis. I also thought it was imprudent to give the treatment plan without others in the room. We threw a few things in a bag, jumped in the car, and started driving.
At this point, we knew nothing about what we would find upon arriving in Michigan. Could Pat walk? Or would he be bedridden? Could he be driven home? Or would he need an ambulance?
We suspected Pat couldn’t live completely independently. But what would that mean? Would he need 24 x 7 nursing care? A visiting nurse to stop by a few times a week? Would he be able to cook his own meals? Would it be enough for Colleen to stop by on her way to or from work (while she lived 50 minutes away, one of her jobs was just a few miles from Pat’s place).
Being an ex-engineer, I wanted to gather all the information possible, so I could present Pat various options.
Living with us was a possibility. We have a spare bedroom right below ours, so if he needed anything in the night we would hear. Plus, it has a shower with a built-in bench adjoining it. And, of course, because we don’t have “day jobs,” one or both of us is always in the house 24 x 7.
The downside was he would have to leave his home, one that he had lived in for 55 years. He would also be away from his sister and cousins. Plus, we live in a rural area with limited healthcare options. In the Detroit area, Pat would have better access to doctors when procedures were needed. And last but not least, I questioned if we could even get him to Virginia. If an ambulance was required, how much would that cost, especially considering I doubted insurance would pay for it.
We suspected Pat would prefer to be “home.” But I knew from my last visit to “the condo” (which was five years ago) that modifications would need to be made. The wall-to-wall carpet no longer laid flat and there were all kinds of wrinkles and bunches. Also, I was pretty sure the subfloor had issues that would need repairing. The other problem was that there was only one bathroom, and it had just a tub/shower combo. I wasn’t sure Pat would be able to get into the shower when stepping over the side of the tub, and my research told me that a major concern with PCL patients was broken bones because they become very brittle.
Five years ago, when Anna Mae (Michael’s, Pat’s, and Colleen’s mother) was ill, I went to Michigan to address those areas, but when I got there, it was obvious she was already bedridden, and since she passed very quickly, there wasn’t time to correct the condo’s problems. I could have done them after her death, but the morning after she died, I “kidnapped” Pat to bring him to Virginia. Pat had never left home, which turned out to be great because he was there to care for his 97-year-old mother, and she died peaceably in bed. Colleen, Pat, and I were by her side. I knew leaving him alone in that house would kill him – so he got whisked away to Virginia while Colleen volunteered to make the funeral arrangements.
Okay, back to the car. A few hours after we left, Cheryl called me and said Dr. Musa (the oncologist) couldn’t call me that day, but he would do so first thing in the morning. We were on the road a few hours before dark, and we made pretty good time. But we were stressed and tired and had been hitting snow, even though every time I checked the weather app in whatever region we were in it said, “clear skies.” By 10:00 PM, it was just too dangerous to continue, so despite both of our desires to keep going through the night, we stopped at a hotel. We woke at 5:00 AM and got back on the road.
This was one of those times that it just seemed like the destination kept creeping farther and farther away the longer we drove. Part of the problem was it was very cold, and while we love our Tesla, batteries don’t work well at low temperatures, so charging was more frequent and took longer than usual.
By 10:00 AM I was getting anxious because Dr. Musa hadn’t called. Around 10:30 a call came in from Colleen (who was in Pat’s room), and she said Musa was on the floor doing rounds. She asked if he had called me, and I told her no. She said, “Well, he’s coming this way now.” I told her to put her phone in his hand as soon as he entered the room.”
Now, I should note that I was pretty pissed off already because even though Pat’s room was almost always occupied by a family member or neighbor, Musa had talked to Pat when he was alone. I thought this was unacceptable. I don’t know exactly what he told Pat, but that kind of news is pretty hard to digest, and Pat is not the most “worldly” guy, so I’m not sure he fully understood what was said.
Dr. Musa got on the phone and explained that Pat had a very aggressive condition and chemotherapy has to be started immediately. I don’t know my exact words, but it went something like this.
“Yes, I know all that. But can we just back up a bit. Can we agree that this is a very rare form of leukemia”
“Yes.”
“And is it true that it doesn’t respond very well to chemotherapy?”
“Yes.”
“And doesn’t it usually need a multi-prone approach including chemo and stem cell transplants”
“Yes, but the hospital won’t approve such things, no hospital will. It’s too expensive. So chemo is the only thing I can offer, and we need to start now.”
“Look I’m about an hour and a half away. I don’t want anything to start until I get there. Surely we can wait another hour and a half.”
“If that’s what Pat wants then yes.”
“So, the only measures you can offer are half measures?”
“Yes. But I treat a lot of multiple myelomas and the medicines these days aren’t like in the past and chances of success are much better.”
“Okay, but given how rare this disease is can you really say that? Now, I don’t mean to question your authority, but have you ever treated anyone with PCL?”
“I’m the head of oncology at this hospital; I treat all kinds of cancer.”
“I don’t doubt that, but this is a big decision, and I would like a second opinion.”
“Well that’s your prerogative.” And then he gave the phone to Colleen and left the room.
“Well, I guess I pissed him off.” I told Colleen.
“Yeah, you should have seen him, he was definitely not happy with you.”
The feeling was mutual.
Okay, we finally got to the hospital around noon on Wednesday the 15th. Pat was sitting in a chair and eating. He looked good. Maybe a little thinner than the last time we saw him. But he was alert and talking with Colleen and except for the catheter draining is bladder, he seemed 100% a-okay. Later in the day, while I went off in search of gaining access to Pat’s complete medical chart, Michael helped his brother walk around the room a bit. That was the first time he had walked since admission.Later that day, Pad decided to try to use the commode and was able to get out of bed and use a walker with no problem whatsoever.
I was still mad that the oncologist had (a) talked to Pat while he was alone, and (b) barely talked to me at all, but I knew since Musa had already made his rounds, he wouldn’t be there for the rest of the day. So I tried to get out of Pat what had been said.
“He said that the hardest thing with cancer patients is their immune system. If he can keep it from shutting down completely he’s seen people live another ten years.” Pat told me. Now I’m not sure what else was said, and maybe Pat was just focusing on the positive. But that didn’t “jive” with the research I had done.
As I mentioned, in the days leading up to the biopsy result, I had been scouring the Internet. I had asked ChatGPT, “What is the prognosis of a 73-year-old man diagnosed with Plasma Cel Leukemia without treatment. It came back with 4 to 7 months. I then queried with treatment. And it said 7 to 11. Now, I’m smart enough to know you don’t trust “the Internet” – and least of all AI – with such a vital piece of information, so I still needed to find out more from a doctor, but it was at least something.
We were at the hospital the whole day while neighbors and cousins came to visit. So many people were coming by. Chairs had to be pulled in from other rooms! By the time dinner arrived, Pat was back in bed and eating heartily.
At some point, Michael talked to Colleen about whether she and Larry would consider moving into the condo. To be honest, I wasn’t sure she would. The three of them (and Anna Mae) had lived together for several years and there had been a lot of tension in the house, so Colleen and Larry had moved out. She didn’t even hesitate. “Of course I will.” Michael then told her to go ahead and quit both jobs, and we’d pay her full salary – after all, it would be about the same as a live-in nurse and Pat would certainly be happier with his sister taking care of him rather than a stranger.
I then called a flooring company to put in hardwoods and “Bath fitters” to change out the tub. I was able to get appointments for both of them to stop on Friday and Colleen said she could be at the condo.
Throughout the day, I kept checking with the nurse (Amanda – remember her?) to see when the admitting doctor would be coming by. I knew he practiced general medicine and not oncology, but he must be better than ChatGPT, and I really needed a prognosis. Amanda told me Dr. Ashish usually makes his rounds in the evening. And I asked if we could stay past visiting hours so I could talk to him. She responded, “We won’t kick you out.” As it got later and later, I checked in with her again. “Are you sure he is coming? Because if he is I’ll wait all night, but if he won’t be coming at all, then I might as well leave and let Pat get some rest. She assured me he WOULD be there, but it could be late. Around 10:00 PM I went to ask her again and I found a different nurse at the station.
“Where’s Amanda?”
“Her shift ended. She went home.”
“Oh, well, she told me Dr. Ashish does his rounds late, but that he WOULD be coming, can you tell me when?”
“No. We never know when they’ll arrive. But I can say I work the night shift, and I’ve never seen any doctor on the floor this late.”
GRRRRR!
At that hour, I figured he would be a no-show. So, I got Michael and I a hotel that was both (a) near a Tesla charger – we had drained it almost all the way in our rush to get to the hospital and (b) was near something called B.J.’s Taphouse. A chain I remember going to once, and I seemed to remember the food was good. After charging the Tesla, I asked Michael what he wanted to do. We are both “early-to-bed” people, so it was way past our bedtime. I was surprised when he said he would like to get a drink and “a little something” to eat. Normally, I would never eat that late (and I hardly ever drink), but I was 100% on the same page with him.
While it was too cold to walk from the hotel to B.J.’s we figured since it was only a few parking lots away and the streets were practically empty because of the hour and the snow, that we would risk the short drive.
The place was practically empty – again because of the cold, snow, and the hour. But we had, by far the best waiter I’ve ever known serving that evening. His name was JoJo and we ordered some pot-stickers, avocado eggrolls, and an ahi tuna poke. I got a margarita and ended up getting two because the bartender mistakenly made a strawberry one rather than a lime. Jojo presented the pair with a smile. “This is your lucky day.” I couldn’t help but think: Well, really not so much. But upon further consideration and how well Pat was looking – I thought maybe JoJo was right.
On his way to get our food JoJo stopped by the table. “I want you to seriously consider the answer to this question, debate it amongst yourselves, and when I come back I want your answer. If you could only see one movie from now on, what would it be?”
Both Michael and I went to Barb and Star go to Vista Del Mar – given our setting and choice of “dinner.” I talked about this movie in the afterword to Drumindor, and it was just the kind of movie to come to us after the day we just had – fun, funny, whimsical, and pure enjoyment.
Over the next few hours JoJo and Michael pulled out their iPhones and compared lists of favorite movies. We added some to ours, Jojo did the same to his. We agreed on many choices, except what was the best Guardians of the Galaxy flick. I’m a firm believer in the first one, and Jojo contended that #3 was the winner. I almost couldn’t forgive him for that, but the food, great company, release of stress after the long drive and ten hours at bedside, and most importantly the drinks had lifted our spirits in a way I didn’t think possible. I know from this time on, whenever Michael and I are stressed, we’ll think of JoJo and the healings salve he applied to us that night.
Okay, so Thursday the 17th arrived with the streets dangerously covered in snow and slush. Figuring we probably wouldn’t eat all day while at the hospital – I didn’t want to leave Pat’s bedside for an instant because I knew the second I did the doctors would come by – so we stopped at someplace called “First Watch” because it was open for breakfast. I guess it’s a chain – not sure if it’s limited to Michigan or not, but it was quite good. Michael carefully maneuvered the car through the dangerous streets, and we got to the hospital around 9:00. Turns out Dr. Ashish didn’t make his rounds that night, but he did come at 7:00 AM.
GRRRR!!
At some point, Colleen arrived and noticed that Musa was on the floor doing his rounds. I didn’t know what he looked like, so I went to the nurse and said I MUST see him before he leaves. A short time later she came to the room and told me both Musa and his assistant would be by shortly. I kept seeing “someone” go by the door, and I “almost” posted Michael at the elevator to make sure Musa didn’t leave before we could “chat,” but I thought that might be a bit extreme.
Around 11:00 Musa’s assistant came in. I started asking her questions about Pat’s prognosis and she didn’t have any answers. I said, “We were told Musa was going to be coming in.” She replied, “Oh he had to go back the office.”
GRRRR!!
She asked about a consent for chemotherapy and expressed how important it was for them to start right away. I replied we couldn’t make any decision until we got a prognosis. And I asked if there was another oncologist I could talk to. She said she would put in an order for that. I also wanted to speak to a palliative care physician to get their opinion so Pat could have both options. She said she would add an order for that as well.
When she left, Michael sneered and said, “What a coward!”
I didn’t quite understand.
He added, “Musa wasn’t going to come into the room with you here.”
“I said that was ridiculous, he’s a professional with a job to do.”
Pat and everyone else agreed with Michael’s assessment. I still have my doubts.
Since I had missed Dr. Ashish’s rounds and Musa was avoiding me, I tried calling Dr. Ashish’s office directly. I was told he wasn’t in yet, but that he would call me when he arrived. Later I called, and I was told he got my message, and he would be calling me shortly.”
The rest of the day was Michael and me waiting for the second oncologist and the palliative care physician and chatting with Pat and the plethora of relatives that came to visit. One cousin suggested we try “alternative medicine.” Another took me aside and mentioned how after finding his prostate enlarged he started taking, Ivermectin, which really was a “miracle drug that can take care of just about anything.” You might remember Ivermectin as it is the horse paste used to treat heartworm, mites, and other parasites in animals that was commonly recommended by conspiracy theorists during COVID. He also explained to me how chemo works. “It’s a huge money maker for oncologists because they buy the drugs from the pharmaceutical companies, mark it up, and make a lot of their income off the profit.” Given the source, I didn’t take that to heart.
What we (the family) were all in agreement about was that chemo was a bad idea, and Musa was an a**. Most of them were in the room when the palliative RN arrived. She and I discussed palliative care back and forth and talked about things such as pain and anxiety medications and keeping Pat comfortable.
When she asked Pat if he had any questions, he said, “So you understand all that stuff that Robin is talking about?”
She smiled and said, “Yes.”
“So you agree with her this is what I should do?”
She grimaced and hesitated.
I said, “She’s not going to answer that. This is your decision, and she’s not here to advocate or tell you what to do. She’s here to provide the information so you can make your decision.”
We chatted a bit more and then she said, “I think rather than palliative care you should consider hospice.”
That was quite the wake-up call. As I said, I was still waiting for a doctor to give me a prognosis, but having gone through the hospice route with Anna Mae five years ago, this meant the end was eminent, and that was much closer than I had expected.
I said, “Would he qualify for hospice?”
She said, “Yes,” then asked about Durable Power of Attorney and DNR, and who should make decisions if Pat couldn’t. Everyone in the room pointed at me. She left after telling us she’d send the paperwork over.
Toward the end of the day as one cousin was on her way out, she questioned me in the hall about putting “Pat’s affairs” in order. Pat doesn’t have much, but he did inherit a bit of cash from Anna Mae when she died. Michael and I renounced his share, so the money was split between Pat and Colleen. But I was pretty sure Pat didn’t have a will, and that would mean probate. We planned on renouncing once again, but even so, it would mean paperwork for Coleen that I wasn’t sure she knew how to navigate.
Michael and I left around 7:00 PM and when we were in the lobby Colleen called and said Dr. Ashish was looking for me. I said, “I’ll be right up.” She answered, “No he’s on the phone.” I told her to have him call me.
We talked for quite some time. I said, “I know you’re not an oncologist, but since Dr. Musa didn’t give me a prognosis, I need “a rough guess.” He said, Pat had about a year. That was better than I thought. I asked about with treatment, he said about a year. I wasn’t sure if that meant another year or the same, but either way it really didn’t matter. Noreen (Pat’s, Coleen’s, and Michael’s sister) had died of cancer in her twenties. In her case, there was a chance (albeit slim) to beat the disease, so she took chemo but suffered greatly and died painfully. Now, I know medicines have improved in the 50+ years since then, but I also knew it wasn’t an easy thing to go through and I wanted Pat to have as little pain and discomfort as possible.
I told Dr. Ashish, that while we still wanted to hear a prognosis from an oncologist, we were heavily leaning toward hospice, and he said he could start the paperwork for that. I figured I’d talk to the other oncologist the next day and we’d have all the information we needed to help Pat make the final decision.
That night Michael and I went back to the same hotel and restaurant. Sadly JoJo wasn’t there – but he had worked his magic the night before, and that wizardry was never going to be recreated so it was just as well. I started feeling like we had everything moving on the right track. So we went to bed early as I wanted to be at the hospital first thing so I wouldn’t miss the oncologist. I changed our hotel room to one that was about a mile from the hospital.
Michael and I got up before dawn and went to the only restaurant open: a Koney Island. If you’re not from Michigan you might not know what it is, but they are ubiquitous in the Detroit area. There breakfasts are kinda like Waffle House, and they have THE best chili dogs in existence.
Now this next part I hesitate in talking about because it makes me look a bit, “out there”. But in for a penny, in for a pound.” I’ve mentioned a few times about Anna Mae’s death five years ago. She had gone into the hospital for a bad UTI and then to rehab because she hadn’t been moving around a lot while in the hospital. At the time, we had readers coming for a visit from the other side of the country, so I told Michael I would go to Michigan, get mom a hospital bed, teach Pat how to cook some soup and mashed potatoes because Anna Mae could no longer eat solid foods, fix the floors and the tub, and interview care workers to give Pat some time off to do errands and what not. When I got there I found an 85-pound woman who was obviously near death. I fought with her primary care doctor to get a hospice prescription, and I also “kidnapped a priest” to come in and give her last rights. We weren’t sure how long it would be, but the plan was that as soon as the readers left our place in Virginia, Michael would fly up and join us.
Each day, I called Michael to report in. On one particular day, I went outside to walk the parking lot of the condo, so Pat didn’t hear me. I told Michael I didn’t think it would be long. The sun was rising, and I witnessed the most amazing and unusual sunrise I had ever seen. Pink and blue with high wispy clouds, and it was so breathtaking I just had to tell Michael about it. I went on, and on, and on, and sounded pretty much like a babbling fool. Anna Mae never lived to see another sunrise. She died in the early hours of the next morning (2:00 AM) with Larry, Coleen, Pat, and me at her bedside. At the time of her passing, I had totally forgotten about that sunrise until . . .
On the way to Pat’s hospital the same sunrise dawned. Michael was driving, and I couldn’t believe it. Now, I’m not one to believe in “signs.” And yet, there was no denying that I’d only ever seen that sunrise on two occasions. But I’m an engineer by trade, and the logical side of me took over. My babbling about, “It’s just like that time with Anna Mae” turned into rationalizations such as, “It probably has something to do with the latitude that Michigan is in. Or the level of pollution in the air. Besides, Pat’s been just fine. He’s eating, walking around the bed. And we’re going to be taking him home, probably tomorrow.”
We arrived at the hospital on Friday the 17th early, and Pat was as he had been: sitting up, eating, conscious and talkative. Colleen was headed to the condo for the home renovation appointments I had arranged. When she got there, she found a mess. Pat had always been a bit of a “pack rat” – not quite a hoarder but not far from it, but with him having the condo to himself for 5 years since Anna Mae’s death it had become a disaster. Michael, who hates being in a hospital (he was there for weeks (or months) during both his sister’s and his father’s death, –went over to help Colleen clean things up.
I sat by Pat’s bed side, and the reality of his situation was starting to set in. I asked if he wanted to talk to a priest, he surprised me by saying, “Maybe but I always forget the questions I want to ask him about.” I had bought a little leather notebook during one of our charging stops, and I was recording all kinds of notes in it. I told him to just tell me, and I would write them down. Then he then started talking about things he had like his father’s WW II medals and how he wanted them to go to our kids or maybe Colleen’s boys. Then he talked about other things, a special “multi tool” that he really wanted Michael to have, and his prized saw that he didn’t know who to give to, but he wanted it to be used. I mentioned that our daughter Sarah is doing DIY carpentry, installing moldings in her previous home and she just recently moved into a new place and would be doing more of that soon. He brightened up and said he wanted her to have that. He kept going on and on and I kept writing things down. After a while he seemed to be done, and I asked him. “Do you remember when mom died, I told you to put Colleen as the beneficiary on your bank accounts? Did you do that?” He couldn’t remember.
Then a pastor came by. A nice guy. When he found out Pat was raised Catholic he mentioned there was also a father he worked with. He asked, “Do you want him to stop by or would you rather call him when you want to talk.” To my surprise Pat said, “Have him stop by.” I was encouraged by that as I knew Pat had had “issues with God” but his religious beliefs were something he wouldn’t talk to me or Michael about.
After the pastor left, I called the bank to see if there was any beneficiary on Pat’s account, but they couldn’t give that information over the phone, and said Pat would have to come down to a branch. I told them that wasn’t going to happen that he was in the hospital. After “going up the ranks” through several managers we finally got Pat to verify his identity and were relieved that there was a beneficiary.
About that time the paperwork for DPOR and DNR came in and so did the priest. I walked out so they could have their privacy. When I saw the priest leave, I returned, but with so much “doom and gloom” talk that morning I didn’t think it was the right time to slide the DNR paperwork under his nose, so I set it aside.
Pat teared up when talking about Linda, the neighbor who had recently died. Pat was with her around the clock because as he said, “No one should die alone.” I told him he wouldn’t be alone – and reminded him how his hospital room had been like the ending of “It’s a wonderful life” as it seemed like everyone was stopping by to see him. He then told me how much he appreciated Michael and I being there, and he mentioned Linda’s last wish and how it was to go to Mackinaw Island – which he had taken her to. Then he said, “I was kinda thinking about coming down to Virginia and visiting with you guys.” I told him of course he could do that, but we weren’t going anywhere. And he’d be checking out of the hospital soon and Larry and Coleen were going to move in and take care of him. He asked if they would cook for him. I smiled and laughed and said of course. They’ll even get you Koney Island hotdogs because I knew it was his favorite.
Around 2:00 PM Michael returned after he, Colleen and Larry had taken 4 U-Haul’s full of junk out of the condo. The flooring guys were able to measure the rooms, they called for a deposit and the new flooring would be installed on Tuesday. The bath fitter people said they could get the work done by January 31st, and I put a hold on that because I still wasn’t sure what Pat’s “post hospital” life would look like.
On this day, “Gigi” was the nurse on duty. And she was having a rough day. I didn’t see her at the desk for a single minute and she was obviously dealing with many emergencies. I hated to “bug her,” but I thought Pat could benefit from some anti-anxiety medication and she got a doctor to prescribe some, and that helped to take “the edge off.”
Pat ate only a few bites of his lunch, and he started to have severe gas pains. Something that Michael suffered from most of his life until he found the right diet to avoid them. Michael tried to get Pat up to walk a bit and maybe go to the commode but even getting him to a sitting position made the pain worse. I went to get Gigi.
She suggested a soap-suds enema or a suppository. I suggested pain medication. Pat refused all three. He thought if he “just laid there awhile it would work itself out.” I told him this lack of bowel movement had gone on long enough about two weeks at this point, and it would only get worse. When Pat continued to refuse any options, Gigi looked at me sympathetically – “I know,” I told her, “You can’t do anything without his consent. Let’s see what his brother can do.” So we both left the room.
Michael knew that one of Pat’s biggest fears was to become like their dad. During his final days with colon cancer, James Sullivan was in so much pain that all the kids could remember were the “choo-choo” noises he would make as the pain racked his body. Michael pointed out that Pat was headed that way, and he really needed the enema – Pat didn’t understand what that meant, and once Michael explained it, Pat agreed. I got Gigi back in the room, but after listing to his bowel area she needed to consult the doctor. There was a concern that Pat was too impacted, and that surgery might be needed. So before anything else was done, an xray was ordered. I thought they were going to take Pat down to another floor, but they actually had a portable Xray, and I left the room to give Pat privacy.
Eventually, Michael came out and said it was going to be okay. Apparently, the xray had, as Michael put it, “literally scared the sh*t out of Pat and he had a small bowel movement.” With progress on that front, Pat then agreed to some pain medication.
While Gigi went to get it, he asked me. “Is this going to be like Tylenol?”
I said, no Pat, we’re getting you “the good stuff.”
There was a lot of back and forth between Gigi, the doctor, and the pharmacy related to dosage and eventually she convinced them to break up the Dilaudid into two smaller doses (because she had that level in stock on the floor) and Pat got his shot through the IV which wasn’t hooked up to a bag or anything.
In seconds Pat calmed.
I asked, “Are you in any pain, Pat?”
Groggily he replied, “No, but my head feels funny.”
I told him, “That’s because you’re high.”
Finally around 4:00 the second oncologist arrived. Pat was now asleep, and we went to the lounge to talk.
He asked, “Why are you seeking a second opinion?”
I explained, “Let me be clear, this is not because I want to change oncologists. I’m confident in Musa’s ability to administer the treatment plan he came up with. But what I need insight on is prognosis so we can help Pat decide between chemo and hospice care.”
The doctor went on to tell me the entire “treatment plan” which included about half a dozen medications – all of which I wasn’t interested in, but I let him talk. When he was done I asked. “Am I right in my conclusion this cancer is not curable?”
“You are correct. But it can be treated, but he’ll have to undergo maintenance his whole life. The time between treatments may vary but he’ll always have them. There is no cure.”
“So what’s his prognosis?”
“Dismal” he replied.
“Can you quantify that a bit?
“Only god can say.”
“Can you give me an educated guess?”
“3 months.”
“And with treatment?”
“Maybe six.”
So I finally had my answer. To be honest, I hoped it would be quicker. Being bedbound and knowing you are going to die would really mess with my head, and I’m sure it was messing with Pat’s. And my research told me it was going to be very painful.
“Given that, I think it’s best if we go the hospice route.” I said.
“Who will be with him?” The doctor asked
I explained that his sister and brother-in-law would be moving in, and we wouldn’t be going back to Virginia until Pat was settled into a routine. And I would also augment with visiting nursing care if necessary.
The doctor concurred that hospice was the right decision. And filled us in on the process, which included a “family meeting” with all parties involved. I called Colleen – who was still at the condo finishing up and we planned to get to the hospital early, and wrap this all up and hopefully have Pat home by lunch
We returned to Pat’s room and Gigi informed me that he had several more bowel movements, which I saw as the only possible impediment to discharge. So that hurdle was cleared. Pat was once more sleeping peacefully, and the nurse shift change was in process. I told his new nurse that if possible I would like Pat to be sedated so he could have a good night’s sleep because tomorrow would be a “big day” for him. I also mentioned that we were just a mile away and if he happened to wake in the middle of the night and get “chatty” – which he had done the last few nights. To give me a call and I’d come by.
We went out to dinner with Patrick Brunette. A friend from mine and Michael’s high school, who was also in our wedding party. Pat is a very accomplished professional and a really smart guy. He told me the same thing Michael’s cousin did about chemotherapy, and given Pat is levelheaded and not prone to conspiracy theories, I thought he might be right. I looked it up, and apparently that is the way “oncology works” which I think is a complete conflict of interest. I mean what doctor is going to suggest palliative care when they stand to earn thousands of dollars if chemo is administered? But that’s a topic for another day.
It was an early night, as both Michael and I also wanted a good night’s sleep for the next day’s activities. I went to sleep feeling totally prepared. My ducks were in a row. I had a battle plan. And having helped Anna Mae through hospice I was confident we could do the same for Pat.
For reasons unknown I awoke at 2:00 AM. I slipped out of the hotel room and called the hospital “just to check in.” If Pat was awake, I wanted to be by his bedside so he could express his fears and concerns to me, as I thought it would help him to work through things and it would be better than talking to a stranger and tying up the nursing staff. I got his nurse, and she said around 11:00 he started having an altered mental state and they were having trouble stabilizing his blood pressure. I asked her if I could come down, she said, of course just go through Emergency as all the other doors will be locked.
I debated letting Michael sleep but woke him anyway. We got to the hospital around 2:15 and Pat was in terrible pain. Saline solution had been hung. Torri (his nurse) was at his bedside, and Pat was howling. I asked about pain meds, and she said with his blood pressure the way it was they couldn’t give him anything. I took one hand and Michael rubbed Pat’s head. Pat kept bringing my hand to his mouth and after a while we realized he thought he was drinking. A nurse working with Torri got us a swap and a cup of water that Michael would dip and Pat sucked on it.
Tory explained how she hadn’t been able to leave the room since midnight, and that stats of his blood were WAY off. A transfusion had been ordered, and Pat would have to be moved to the intensive care unit, and she was just waiting for a space to be cleared.
Pat was incomprehensible for much of the time, but there were a lot of “Oh God’s” and “I can’t take it.” He also muttered “Alone. Alone.” At this, I spoke very loudly. “Pat. You’re not alone! @e’re right here!” He opened his eyes and looked right at me. I said, “Hey there, sweetie. Look, Michael’s here too.” and I pointed. He saw Michael and then calmed considerably.
While they prepared a larger IV for the transfusion, Pat kept “drifting off.” I’m not sure if he was passing out due to the pain or just nodding off from exhaustion – but the nurses would rub his sternum to rouse him and ask him repeatedly if he knew his name and where he was. I guess they were trying to determine if he was able to direct his own care. After about half an hour, he couldn’t be roused at all. Another nurse, Lara, I think she was the charge nurse, mentioned something about a change in code status. Torri said she wasn’t authorized to do that. I brought up that he never signed the DNR paperwork, but that I was his designated point of contact on his chart. I went on to explain that the plan had been to discharge Pat to hospice that morning.
I was afraid that the lack of signature on the DNR was going to be a problem, but it turned out not to be. The resident who had been overseeing Pat’s condition since about midnight came in, asked us whether we wanted the transfusion, and to move Pat to the ICU and we said, no. A 4:30 AM call to Collen confirmed she was on board with us. When the doctor hung up the phone with Colleen, I called her back. She and Larry were getting dressed and heading over, but just at that minute it looked like Pat was taking his last breath. It turned out not to be the case, but it was very, very, close. The nurses left the room (monitoring him remotely) and Pat, just like Anna Mae, didn’t see another sunrise. He died peacefully around 4:40 AM with Michael and I at his side. And the thing I'm still grabbling with is that I had absolutely no reason to notice the sunrise just the day before. I'd been by Pat's side for three days and he was fine. The worst he experienced was a few gas pains. So, the last time I saw him would definitely not put my mind in the state that his last day had arrived
Colleen and Larry got there about an hour and a half later. Colleen was saddened she “didn’t make it there in time” – but I was glad she didn’t see Pat in the pain that we had arrived to. All told, though. That pain was very short lived. And while in my heart of hearts I never thought it would happen so suddenly (I figured it would be about three weeks), I was grateful it went so quickly.
After Colleen and Larry said their goodbyes, we left the room and went down to the hospital lobby to talk about arrangements. I talked Colleen through the probate process, although I’m probably going to have to make a trip back to Michigan soon to help her through that. We talked about the funeral, and I said, Michael won’t be going. Colleen said, “Oh, I know that, it’s not a problem, were’ just so grateful you two were here.” Once more, she was going to take care of that. I told her not to worry about anything financial. Hopefully Pat’s money and the fact that they now owned the condo, would be enough for her not to have to work, but if it wasn’t we’d still make sure she was taken care of.
Around 8:00 Michael and I returned to the hotel, checked out, got in the car and started home. We stopped at that same breakfast spot (First Watch) and even though we were operating on just 4 hours sleep we hoped to get halfway home by the time it would be late enough to check in at a hotel. As we traveled, I checked the weather, and we were racing yet another storm. We thought we might get ahead of it so that we could bed down and get up around 5:00 and finish the trip but the further we got the more the forecast changed. The end result was we had to drive straight through. We got home around 9:30 PM, exhausted and spent.
Pat was cremated on Sunday the 26th. We’re still processing our grief. Besides myself, Patrick was probably the person that Michael was closest to. And I knew him for more than 45 years. We took him on vacations with us to Bar Harbor, and High Island, and hikes through the Shenandoah and Blue Ridge mountains.
Since returning, it's been rough around the Sullivan household. The weather has not been co-operating, colder than normal and full of snow. In fact, another storm is on it's way later today. But I still feel like I have to get my act together. My plan is to be “up and running” again by next Monday. So bear with us for just a few more days while we get our act together.
Until I typed this all out I didn’t realize how much I needed this. So even if no one reads what I’ve written, it was cathartic for me to type these words, even though it’s way too long and has much too much detail. For those who made it to the end, thanks for lending an ear.
Robin.
