I called my husband Billy. It was a family nickname, and his friends called him that as he was growing up. After we had been married several years, I noticed he asked people to call him Bill, and sometimes there was confusion when I referred to him as Billy. But he would always be my beautiful Billy, such a handsome, strong, capable, loving and kind man. And so brave. We knew he was brave because he liked to do dangerous things, like riding motorcycles and dirt bikes, water skiing and eventually beginning to master barefooting, riding across the country on his Harley, moving his young family across the same country to a place strange to him. Unfortunately, we must add another dangerous thing , one he did not like – acquiring and fighting Acute Myeloid Leukemia.
I will perhaps tell you about that fight in detail. It’s a difficult story to tell so for now I will tell you that he became weak in 2019, something that didn’t happen to him. We found out Billy had MDS, a cancer of the bone marrow. By January of 2020, the MDS had progressed to AML, and my husband was dying. Billy was strong, physically and mentally, and he had a bone marrow transplant in June 2020, and went into remission. The cancer came back 2 more times. This story is about the third time.
Billy and I had been going to his doctors in Indianapolis regularly, because his blood counts were going down again. We were told in May 2024 that he had MDS once again. How unbelievable that it would be five years after the initial diagnosis, just when we were thinking he was out of danger. The only treatment was Vidaza. So Billy began getting treatments in our town, Terre Haute. The cancer causes dangerous drops in blood counts, and his white cell count got down to 1. He got an infection in his port, and landed in the local hospital. He was treated with blood transfusions and strong antibiotics. He was released and got to be home for 3 weeks in July before he was readmitted with an infection once again. Billy was transferred to Franciscan Health in Indianapolis, where his cancer doctors practiced, and they treated the infection and low blood counts. Eventually, we received the news that his AML was back and that there were no treatment options available to him. He was too weak for another bone marrow transplant, and his graft vs host disease was bad enough that a mini-transplant could do more harm than good. Billy was discharged on August 2, 2024 to go home to die.
Once home, we went to the Hux Cancer Center 3 times a week so Billy could get blood transfusions. He was running a fever every night, something we were told was caused by the cancer and not an infection, so we did not go to the hospital when he had a fever like we would in the past. When he saw the doctor on Friday August 9, we were told that Billy’s platelets were not coming up anymore and that he was “at the end”. The doctor told us that he could continue to get transfusions as long as he wished, but they probably would not do anything. I asked the doctor if we should tell our children that the end was near, and he said we should. So I sent our children a message on our group text, saying “Make arrangements to come here.” I also texted his sisters, Lisa, who lives in Tahoe, and Victoria, who lives in Boulder Creek, CA.
Our oldest son, Jason, lives about 30 minutes away in Clay City, Indiana. Our daughter, Joanna, lives in Chicago and our youngest son, Joseph, lives in Lafayette, Indiana about 2 1/2 hours away. I wanted to give everyone time to get here to be with their dad. The doctor said Billy could live for hours or days, so there was no way to know how much time we had. Joanna and her husband, Nick, came down on Friday. Joseph came down on Friday or Saturday, I’m ashamed I can’t remember for sure. Jason and his wife Janice and their 6 kids came over and were here as much as possible. Billy’s sisters both flew in on Saturday and stayed in a nearby hotel, but were at our house as much as they could be.
I felt a bit like the boy who called Wolf at first. Billy seemed to be his very weak, but normal self. Not like he was dying. I apologized to everyone, but everyone just said this time together would be well spent. As it turned out, Billy only had a few more days left to spend with us, and that precious time we all had together will always be treasured by us all. Since we were all together, one thing I really wanted to do was discuss and understand Billy’s wishes as to his funeral. We all got to tell him what felt important to us, and he got to tell us what he wanted. I cannot stress how wonderful it was later to have solidified all those plans, because if we had not I would have been completely incapable of making any decisions. Billy wanted to be cremated, something I wasn’t crazy about. I wanted to have a real funeral, something Billy wasn’t crazy about. Joseph wanted to have a grave site to visit in the future, a place to go to remember his dad. These were the types of things we talked about frankly and with a lot of tears and sadness. We decided as a family that Billy would be cremated, that we would have an open casket funeral first, and that we would have his ashes and could always purchase a grave site later where both Billy and I could be buried, bodies or ashes.
Billy was coming out into the family room to be with everyone until about Monday. On Monday, he needed to go to the doctor for transfusions, but he was so weak he couldn’t get out of bed. I don’t remember how Billy’s sisters and I managed to get him to the doctors office. I remember his sisters got him a transporter, but I don’t remember if we used it. But Billy did manage to get a platelet transfusion on Monday August 12. He was weaker than I had ever seen him. He just wanted to lay in bed and hold hands. I treasure that memory so much, just laying together and holding hands, being there for each other.
As a side note, Joanna was pregnant, and I was concerned about the stress of all this on her. She came down with some kind of food poisoning on Sunday, and was terrified that she had the stomach flu and would give it to her dad. She spent Sunday night at a hotel, and came back to our house on Monday, still sick but better. She and Nick had discussed going home on Sunday, but they couldn’t because she got so sick. They probably wouldn’t have left anyway, but I’m glad they stayed.
On Tuesday, we were told that hospice would come. True to their word, that morning a bed and equipment was brought and we re-arranged the family room so it could all work. Billy had expressed a desire to be able to look out the windows at the lake from the hospital bed, and we wanted to make that possible for him. The hospice nurse told us that his medicines would arrive by delivery and explained to me how to administer them. One medicine was for agitation and one medicine was for pain and to ease his breathing.
That same day, Jason and his friend Rufus, who is like a third son to us, were cutting on a fallen tree in our front yard. Afterwards, all the guys, Jason, Joseph and Rufus went into our bedroom where Billy was still lying. They had a long discussion, about what no one has disclosed, but one that I believe included Billy telling them to take care of me. He was very worried about me. We were almost married 40 years, just 3 months shy of it, and I had forgotten that there was any life before him. Plus, the last five years had been spent mostly caring for him worrying about him, taking him to appointments, etc. God only knew what I would do without Billy to take care of me, and without him to take care of.
We moved Billy to the hospital bed shortly before his medicines arrived. He was so happy to be able to look at the lake through the windows, and he had the boys move his bed in the perfect vantage spot. In typical Billy fashion, he was happy to see what he would miss most in death – his land, his family, his home. I hope he filled his eyes with all of it, as much as he could. We began to administer Billy’s medicines to him, and were filling out a form every time we did. It helped to keep track, since the medicines could only be given every hour. The medicines helped Billy sleep, and eventually he fell asleep and was never awake again. I hated that and even talked about skipping a dose, so he could be awake to talk to us, but instead his medication was increased because his breathing was so labored. Joseph informed me that his wife Trisha would be coming down that evening and I was so happy to hear this. It was good that she was here for Joseph, and Billy loved her very much so she and Billy were close.
We had decided how that night would proceed. I would give Billy his meds until 2:00, when Joseph would take a turn, and then Joanna would administer them at 3:00 & 4:00, then back to me. I would sleep on the couch in the family room to be near Billy. Billy’s sisters left, Jason and family left, and everyone prepared to go to bed. Joanna commented on Billy’s breathing – he was having to tip his chin up with every breath. This was something new and we were concerned about how difficult it seemed for him to breathe. I sat on the couch, wondering what to do, but certain I could not increase the medication dosage.
Trisha arrived, and she wasn’t ready to go to bed yet, so she and I sat and talked in the family room near Billy’s bedside. We talked about how wonderful he was, and I wanted to remind her how much he loved her. While we were talking, one second Billy’s chest was rising and falling and the next second it was still. I couldn’t believe my eyes. Could someone slip from this world to the next in such a quiet way? Someone who was so strong and loud and brave? There should have been thunder and an earthquake. The house should have shook. I should have been holding his hand and embracing him. Our dog, Emmy, never left his side and she guarded the foot of his bed, had tried to keep death away. So many thoughts went through my mind. I placed my hand on his chest. It was still. Trisha was on the other side of his bed, and I looked up at her and asked her to please tell Joseph and Joanna and Nick. I called Jason and Billy’s sisters. Billy’s sisters said they were coming.
It was something I will never forget, those minutes after Billy died. He was still so warm, he felt so alive. I could stroke his beard, and his cheeks and feel him real and solid under my hands for those last times. I can’t remember much, but I know everyone came by his side when they were ready, to say good-bye. And suddenly, the full realization that he was gone came over me like a physical pain and I began to cry. I have never cried so hard, and I hope I never do again. But I made hardly a sound. I don’t know if anyone in the room actually knew the depth of the pain I was feeling just then and why I felt like I couldn’t make any noise. Was it to keep from letting the sound of a heart broken into pieces break free in my tears? Was I trying to be brave, sitting next to Billy? I will never know, but I didn’t let my anguish out in sound, but it was there.
He told all of us how much he was going to “miss it all”. He meant his family, his love of life, his home, his land, his lake. He loved his life so much. But he told me he had to “let go of all that”. He let go. He had no choice. God knew he had fought and battled all these years, but the most horrible disease I know finally beat him. Billy died at 11:40 p.m. that night. He died in the darkness, the open windows of the room filled with black. Hospice was called and eventually officially declared him dead the next day at 1:30 a.m. Men in full suits and ties came to take his body away at 3:00 a.m. And it was done. Billy was dead.
But a new journey of grief was only beginning for all of us who loved him.
A Little Bit of Everything, With Love 