This is my attempt to recount my Dad’s last months/weeks/days before I’ve forgotten them. I’m motivated from reading an article written by someone who had just watched his Dad die after years of fighting cancer.
I started at Christmas because I think that’s the first time I maybe noticed there was anything wrong with him.
My dad had been here at Christmas, and upon reflection I see that maybe he wasn’t as relaxed as usual. What I thought was just introvert’s anxiety over being around too many people at the holidays, I now know was him suffering in silence from being in pain and ill but not letting on.
Once he got home from Christmas, I wasn’t talking to him as much as usual. I was having a hard time simply getting hold of him. He would typically return my calls as soon as he got a chance, even if he was traveling. He had stopped doing that. I caught him at home here and there but rarely and we didn’t talk long. I started hearing voices telling me something was wrong. The same voices that noticed his changed stature and weakened state over Christmas. Dad was sick.
On February 4th or 5th I finally reached him after almost 2 weeks not speaking to him. The longest I might have ever gone without talking to him. 2 weeks. In 33 years that’s the longest I went and 2 weeks was sooo long I was very worried. That should tell you how much we spoke.
He was in New York somewhere on business. My Dad’s job had him doing a lot of outdoor installations of high-tech equipment. When he traveled it meant he was working hard in a very physical way. We know now he had incredible bone pain at that point on that trip. But when I talked to him he just said: Not doing well. He sounded awful. He said he couldn’t kick the flu or something. He wasn’t sure. He said, “It’s like the body aches of the flu, but nothing else.” I cut the call short and told him I’d just talk to him when he returned back to Knoxville that weekend. I called my brother and told him, “I just don’t think Dad’s doing well. Something’s wrong with him.”
On Saturday, I called him. Again. He answered the phone…groaning. He said he was in a lot of pain which is just something I rarely ever heard my Dad reference pain. If he was openly declaring he was in pain? It was bad. I tried to keep the call light because I didn’t know what else to do. He just sounded…bad. He said he had an appointment with his Family Doctor on Monday. He would later tell us that at that moment he knew he was dying. He was in insane pain and…dying. I look back on that conversation all the time and tell people, “Only my Dad would be dying and schedule and appointment for 2 days later with his family doctor.” He very openly wanted NOT to be on the phone. My Dad never faked kindness if he didn’t feel it – and you’ll have to trust me – He did NOT feel it that night. I hung up the phone.
I had my first Balanced Living event that Tuesday in Chicago. I did consider canceling for a fleeting moment, but why? I knew nothing yet.
I tried to call Dad Monday night to no avail, which only let me know he didn’t feel any better. I wasn’t going to call him, not after how much it pained him on Saturday. So, I just went about my life worried – but changing nothing.
When I was boarding my plane to head to Chicago on Tuesday (mundane entry here), I noticed I had a missed call on my cell. That was weird as I had my phone on me the entire time. It had just happened and it was a Knoxville area code. I panicked and checked my voicemail. It was Dad’s doctor, he had my number as Dad’s emergency contact and was worried he couldn’t reach Dad. Did I know how to reach him?
I freaked out. I was boarding a plane to head out of state. I was actually buckled in my seat. The flight attendant was telling me to turn off my phone. WHERE WAS MY DAD? I called my husband and just said, “I’m about to take off, you HAVE to find out how to check my voicemail. There’s a message from Dad’s doctor. Call him back, Call my brother, find my Dad and find out what’s wrong. I’ll call you when I land.”
My poor husband.
I left my phone on so that I could see text messages. As the plane was taking off I got one that confirmed that Dad was okay. Someone had sent my Mom to go check on him. He was calling the doctor. When I landed in Atlanta (or was it Dallas? Charlotte? I can’t remember…) I touched base with my brother. He was trying to get to Tennessee. Dad talked to his doctor and the bloodwork from Monday indicated he was undergoing kidney failure. The doctor told him to go to the emergency room. We would later find his car in the employee parking lot down a very steep hill from the ER. Meaning that dying…and in very severe pain…he found no reason to park close. And he walked up that hill to the ER. I wonder often what was going through his head then, taking that painful walk up that hill.
As I waited to fly to Chicago I kept hearing the phrase, “Kidney failure.” I mean, people die from that…right? What the hell is going on? At some point I finally talked to Dad and he said he was fine, they were admitting him for more tests. He actually said, “I’m not dying, don’t worry. Finish your trip. I don’t even want your brother coming here but I can’t seem to stop him.” I look back on THAT conversation often too. Because he knew he was dying. He told us later. Maybe one of the only times in my life I know for sure he lied to me.
The trip to Chicago is a blur. I remember feeling really crappy that I was so distracted with my first event for the Balanced Living community. I tried to be social, put my game face on. I tried to hide what I was going through. I remember getting the pedicure and just holding my phone tight in my hand and thinking, “I wish Dad would call.” The organizers were wonderful and did everything they could to find me a quicker flight home. They sent a car service to take me to the airport at 4am the next morning. I barely slept at all. The flight back was a blur. I think I finally heard from my brother that day as he made it in to see Dad. They were starting to meet with doctors. Specialists.
I decided to stay in Huntsville until I knew more. I felt better since my brother was with Dad. I wrote first about it here. I guess it was at work on Wednesday that I got the call: “They think it’s bone cancer.”
Because Dad died before the fight really started, I still haven’t processed that he had cancer. Cancer. I got the death certificate and it said, “Multiple Myeloma” as his cause of death. Cancer. My family history now changes. My Dad had cancer. Cancer.
We headed to Knoxville and the following days/weeks of Dad in the hospital seem all blurred together. I know my brother was there the whole time. I know I felt guilty I couldn’t be. Dad got the official diagnosis of Multiple Myeloma. He’d start a pill form of chemotherapy for 29 days. He was put in ICU (I wrote about that room here) for a long time because the kidney failure caused fluid to accumulate in his lungs. My brother was there the first night in ICU and he recalls a terrifying moment when Dad just couldn’t breathe and his panic was making it worse and my brother thought…”This is it.” I remember wishing he had called me then. But also glad he didn’t. I remember my aunt’s shock when she found Dad in ICU the next day. He wasn’t in his room. We forgot to call her. She thought the worst.
Dad had a bone biopsy done when he was in ICU. I’ve often heard about those as being the most painful thing you could experience. He was nervous about it, I could tell. That biopsy is a testament as to how high of a threshold of pain my Dad had. He actually said, “It was fine. Great.” And I think he meant it. I think he was so worried about the potential for pain, that the actual pain seemed like nothing. I can assure you I will never refer to a bone biopsy as “Great.”
Dad was not typically a nice person in the hospital. At least not to family, he was smart enough to try to be nice to the people taking care of him. We realized later most of his anger and frustration had to do with the fact that he wished he hadn’t come in. He said many times if he had known for sure he was dying and what was waiting for him in terms of diagnosis and treatment, he would have never come into the ER that day. When we would tell Dad we were glad he did because it gave us more time with him, he would be openly irritated at that.
I called Dad Feb 25th (or was it the 24th?) because we knew he was getting discharged that week. My brother had gone back home and I assured him I would go back to Knoxville when Dad got discharged. It turns out they were kicking him out that morning. He asked if I would come get him. It was probably the only time Dad openly requested my assistance for anything. I jumped in the car and headed to Knoxville. I picked him up at the hospital. I remember how frail he looked back in his regular clothes because they were so big on him. My strong father. The runner. He looked so small.
I got him settled back into his house and we made a list of things he needed. I went and got him a cane (I jokingly told him I almost bought him a butterfly covered on), some pajamas, and his prescriptions. He had only had one or two prescriptions filled his whole life and now he’s on chemotherapy. He would never wear the pajamas. They’re at my house now, waiting to be given to goodwill.
We talked that day for a long time about what his future looked like. He was in better spirits at home, but still seemed very lost and miserable in many ways. He kept looking in the mirror and saying, “Is this all I am now? I won’t run anymore? Carry my backpack even? What do I do?” He joked at one point, “My job is too physical, I don’t see me being able to do that again. What should I do? Write a book? Start a blog?” The day was poignant because I remembering him thanking me for just letting him talk the stuff out. I remember thinking, “The score is now me ONE you NINETY MILLION.” He always let me talk stuff out. Always.
I left that day for Huntsville and came back that weekend to take him to dialysis. He hated dialysis with every ounce of his soul. HATED it. I blame the pain of dialysis (It’s hard to sit still for four hours when you have so much bone pain and damage) and the inconvenience of it all as being the thing that made him not want to fight. A lot of things confused him that weekend. Why is he doing this? He kept wanting to know WHY? I was worried he was losing brain function for awhile, Did he have a stroke? It turns out he just meant, “What’s the POINT? Why am I doing this?”
On Thursday, March 5th, while MrZ was on business in California – I got the call. The call from my Dad where he said, “I want to talk to you about dying.” I think a huge part of me knew that call was coming. I felt like he was trying to tell me he wanted to give up when we were together, he just didn’t know how. I immediately told him I understood, because on many levels I did. He was so miserable. I had never seen him so miserable. But in reality? I just didn’t know what I was allowed to say.
Can you tell someone, “No” when they tell you they want to die? Did I want to force him to fight if he so clearly didn’t want to? I kept it together and I don’t think I even cried on the phone. We talked a bit about what would happen, about going into hospice care at a facility. About how he wished he’d never gone to the ER that fateful day. About how he just can’t continue like this. I just kept telling him I understood. I don’t even like thinking about that call now. It still hurts too much. Why wasn’t the joy of seeing me enough to make him want to live? I’m his daughter…aren’t I enough? Didn’t he want to see his grandkids grow? Wouldn’t he want to meet any other grandchildren that may come? Aren’t we enough? These are questions I’ll be asking myself forever. But for that call? I just pretending like I understood.
He was going to call my brother and I told him to call me after that.
I called my mother-in-law who works next door. She told me immediately, “I’m coming over.” She met me in the parking lot and embraced me and I cried. I think I blubbered something about it, “Not being fair.” I would say that a lot the following days.”It’s not fair.” That’s a mantra I never used. I know life’s not fair. I’ve never expected it to be fair for me. But it should be fair for the really good people – like my Dad. He should get to live a long and happy life. He deserves it. He deserves the dignity of a painless death. It’s not fair.
I called my husband and cursed how many times in our family we’ve been separated during emergencies. He would be home the next day.
I spent the rest of the day/evening waiting for my brother to call. I knew he’d call as soon as Dad called him. Why hadn’t he called yet? I googled everything I knew to google about how long someone would have to live after quitting dialysis. I read everything from 2 days to 2 months. I called the dialysis center to talk about my Dad’s decision. I learned through a lot of my research that quitting dialysis is a very common decision. A lot of people don’t feel like it’s worth the life it gives them. Since my father’s cancer had already ravaged his body so, dialysis was only allowing him to sustain a level of living still significantly below where he was happy. This helped me accept his decision. At least a little bit.
By that evening I still hadn’t heard from my brother – but I was dying to talk to him. I finally called him. I spent a good chunk of time in the dark that evening, discussing this with my brother. He had a much more realistic reaction. I’ll always worry that Dad read my acceptance as Not Caring. When in reality it was more about Not Coping. My brother would later talk to Dad and try to talk him out of it. To no avail. It was time for him to head back to Tennessee. As would we. With a broken heart I wrote this.
We arrived in Knoxville late Friday night. We brought suits and things for a funeral. We slept little. I picked my brother up at the airport the next morning after a red-eye. Dad had decided to go ahead and head to hospice. We met him there.
Note from 2021: I’m editing this entry and found ANOTHER GODDAMN SPAM LINK FROM “All Caring Palliative and Hospice Care in Cincinnati, Ohio.” A fucking hospice organization actually paid some marketing firm (I guess) to maliciously insert their link on websites where people talk about hospice. I will make sure to complain to them about that eventually but until then I’m just leaving their full name here so maybe someone Googling them will find this post. I AM VERY UPSET THAT THEY USED SUCH NEFARIOUS MARKING TECHNIQUES JUST TO BOOST THEIR SEO. That’s shitty behavior from a HOSPICE group. They should know better.
I’ll never forget how almost normal he looked in the hospice room. He was sitting up in his clothes and eating lunch. Other than being frail, he didn’t even look sick. We sat down with him and started the process of Making Plans. Planning someone’s death is very difficult. We also had The Talk. Dad wanted to know if we were happy with our lives. OF COURSE WE WERE. We discussed some of the effed up things in our lives and how they affected us. He kept saying raising us was so easy. We kept telling him that’s because he’s AWESOME. We all barely avoided crying.
The following week we spent cleaning out Dad’s house at his request. Actually, he wanted us to just blow it up because he hated us taking time out of our lives to deal with “his mess.” He spent the week doing two things that irritated us equally:
1) “Humorously” demanding we find a way to speed up his death and even joking that we should shrink the donation we make to the hospice facility based on how long they keep him alive.
2) Demanding we go back home. Go back to our lives. Come back when he’s dead.
Ha. Funny, Dad.
ANOTHER NOTE from 2021: I FOUND ANOTHER GODDAMN SPAM LINK FROM “Lakeside Manor: A Hospice Facility in San Diego. Another fucking Hospice group that USED SUCH NEFARIOUS MARKING TECHNIQUES JUST TO BOOST THEIR SEO. That’s shitty behavior from a HOSPICE group. They should know better.
We actually had a few, almost “fights” over that same issue. If you knew my Dad you would understand, he just hated being a complication in anyone’s lives. Hence the decision in the first place. He spent that week almost dreading seeing us throughout the day. We kept telling him, “We’re doing stuff we’ll have to do when you’re gone. While you’re still here it’s almost okay. It will be much harder after you’re gone. Let us do this.” He finally just accepted it. He quit fighting us.
After we got the house mostly cleaned out, I had to head home to Huntsville for a few days. It was a tough thing to do, but I was useless there because I kept having to deal with the kids. My brother was there. He could work from Dad’s, I couldn’t effectively. He (as always) could pick up where my family and I had to let go. I’m so glad he could.
Dad deteriorated. Several family members got to come by. Friends from work. My childhood friends even visited. My whole family got to see him one last time. I came into town every few days.
The last weekend I was there with him, I felt would be the last. He barely moved while we were there. He slept constantly. He stayed curled up in the fetal position trying to sleep most of the time. I left Sunday and I look back now and I think I knew that was it. I hugged his frail and bony body one last time. I told him I loved him.
My brother visited Dad every night. Monday night Dad was oddly alert. I remember my brother calling me and telling me about it. Dad was awake and sitting up. Antsy. Mentioned wanting a second opinion because he didn’t think he was dying. Contradicted my brother’s statement that he’d been sleeping a lot. “No I haven’t.” We were both confused. Is this real? Is he really better? The whole process seemed surreal so it almost seemed possible he was fine. Could he be fine? Did they give him happy pills? Is this a sign that the toxins are taking over and this is the end?
Turns out the latter was right.
Around 8:15am the next morning I got the call. The call I had been expecting for weeks. He had died. Dad was gone. Those 8 weeks were the last days with my father.
I think now that I’ve put it all into words, I’ll allow myself to forget it. I don’t really want to remember those days. I’d prefer to remember the days before. I’d like to remember those days forever.