Anne S.

Loss of Husband, Mike

Hi Anne! Tell us, what’s your story?

My name is Anne. I have been in retail for most of my life, and was a very early adopter of Ebay, and started my first website in 2002. I was married most of my life to my first husband. We had a daughter, and after 20 years of marriage we divorced.

And then you met your second husband, Mike?

I met Mike 5 months after my divorce, and we hit it off immediately. He told me the night we met that he had stage 4 cholangiocarcinoma, or bile duct cancer. I admit I didn’t really understand what it was, and I remember going home that evening and googling it and finding out that there was no 5 year survival rate for this cancer. I had never even heard of this cancer, and I felt deeply saddened for this handsome, funny man. Part of me hoped he would never call me again, and that the connection I had felt with him was one sided. I mean, no one would deliberately date someone who was going to die soon, certainly within 5 years from the statistics.

As it turned out, the connection was real and mutual. We cautiously started to date, but within weeks I was in love with him. I couldn’t help but fall in love with him. He was so good to me. After a lifetime of feeling alone, he made me feel like I was the only person in the world. I started going to his doctor appointments, and reading everything I could about cholangiocarcinoma, and potential treatments.

How was it dating - and eventually marrying - Mike throughout his diagnosis?

It seems crazy now, but when we met, he didn’t look sick, and he was so positive he was going to beat cancer, that he made me a believer. Sure, he was thin, but he raced motocross bikes, golfed, and even worked up until a few months before his death. It wasn’t all chemo and cancer treatments. We went to concerts, vacations, and eventually we were married.

Not long after our wedding, things got very serious, and Mike almost died. The tumor was blocking the exit to his stomach, and we gambled and started him on an immunotherapy trial, with the hope that it would shrink the tumor. We would drive 4 hours every 2 weeks for his drug infusions, and then drive back home another 4 hours. He had side effect after side effect and was often tired, and spent a lot of time in bed. However, the immunotherapy clinical trial worked, and in the end bought him another precious 15 mos.

I spent a lot of time alone when he was sleeping, or I would lay next to him in bed and we would watch the car shows he loved so much. I was always on guard, because as anyone knows, cancer tries to take everything from you, and it often succeeds. 

One time Mike was breathing heavy, and felt out of breath enough that the doctor gave him an inhaler. He got the script filled on the way home, and - Mike being Mike - the minute he got home, he started shoveling the snow in the driveway. He was home alone, and started having an asthma attack in the driveway. He crawled to the car, got the inhaler, and thankfully was able to catch his breath. There were always things like this happening, and I got used to living with the stress pit in my stomach. He worked as an engineer, right up to a few months before he died, so you can imagine the absolute will that it took for him to keep on.

Can you talk about the weeks leading up to Mike’s death?

There came a time that we realized that the immunotherapy wasn’t working anymore. For the second time the tumor blocked the exit to his stomach, and eventually he couldn’t eat, and for the second time a feeding tube was inserted. His time was getting shorter and shorter.

The final time he went into the hospital was by ambulance. When EMS got to our house, they expected him to go into cardiac arrest any minute. When we got to the hospital, we were met by the trauma team and the chaplain. He had sepsis for the second time, and this time there would be no miracle last minute thing to save him. He was out of time.

I brought Mike home Labor Day weekend of 2016 on hospice care. They gave him 2 weeks-2 months to live, and he only left the house a few times after he came home. He wanted to die at home, surrounded by the people he loved, and I was determined to make that happen. He would lay in a hospital bed during the day in our living room, and had a steady stream of visitors in and out. People from his past, his siblings, longtime friends all came to say goodbye. 

He couldn’t eat or digest any food. So, he would drink a soda, and then feel full, and either throw up or open up the feeding tube bag and drain all the liquid from the feeding tube. It was a vicious circle. He was either starving or so full feeling he would throw up. I was in a despair most of the time. My husband was dying and he wanted his last days to be happy, so we wouldn’t cry in front of him. Most of the time, I would walk around with tears rolling down my face quietly. 

The time came that he could no longer go upstairs to bed at night, I was showering him, and helping him walk and it just got harder, and harder for me to get him up to bed. So he started sleeping in the hospital bed, and I started sleeping on the couch. 

That’s so much to take for any couple, but especially as newlyweds!

We still had the normal worries that newlyweds have like bills, and house repairs, and kids. The world didn’t stop because a wonderful, smart, handsome 48 year old was dying in a hospital bed in our living room.

We had happy times then too. I would lay in the hospital bed with him for hours, in his arms, and he would do his funny voices, tell me jokes, and we would close the world out around that hospital bed, and just be together.

Can you share a little about his death?

The weekend before Mike died, he told me he wanted his family to come in the following weekend, and that it would be a good weekend to die. I remember laughing and saying that God would decide when the time was right. However, he had held on for so long by sheer will, that he knew when he finally gave in that his body would let go. 

Everyone came in, and by the force of his will he stayed conscious until everyone got there. He fell into a light coma on Friday night, and we partied for two days. I say “we,” but I spent most of the time sitting beside his bed, holding his hand. He had told me that he was scared, and I promised him someone would hold his hand right up until the end, and we did.

At around 3am on October 24, 2016, Mike took his last breath, and finally his worn out body rested.

The only man who had ever loved me, ever adored me was gone just 3 short years after we met.

What was it like for you in the first few months after Mike’s death?

The first couple of months after his death are a blur. I remember that after having never been sick in my life, I was sick all winter. My body just couldn’t fight it off. I didn’t want to. I wanted to be with my husband. Most everyone I have talked to that has lost a spouse has had moments that they wanted to give up, and be with their dead spouse. Not suicidal, but I remember thinking if God decided it was my time, that I would be ok with that. 

The pain was unrelenting. Nothing made it go away, or even abate. I just had to lean into my grief, and do the best I could. Sometimes it was minute by minute, hour by hour, day by day. I don’t remember much about the first six months after he died. I had slept so little the last couple of months of his life, I remember that I would wake up every half hour or so, all night long. I had to try to resurrect my business that had been so severely neglected when Mike was sick, and manage a household, pay bills, and do all the things we do. 

There were days I couldn’t get off the couch, curled in the fetal position. I remember my sprinkler system wasn’t working properly, and trying to deal with that little thing sent me into hysterics, and I felt like I was going crazy.

Oh, I’ve been there before! How did you manage to pull yourself out of those low points?

The lowest point was when I got so sick I was throwing up so much that every time I would throw up, it was so violent that I would wet my pants. I remember laying on the bathroom floor with a towel between my legs, and my head on the toilet seat. I thought about how Mike had thrown up so much over the three years we had been together, and the pain he had endured without complaint. I was dealing with it for a few days, and could barely do it, and yet he had suffered for years and years, and It reminded me yet again how absolutely special he was.

I remember waking up after about 12 hours, I must have had a fever. Who knows? There was no one to take care of me or help me. I was thinking that if I survived this flu that I had, that I would start living again. I had promised him that I would live for both of us, and it was time to get off the couch, and do it.

How did you cope after that? How has your life shifted?

I knew it would be bad, but I wasn’t prepared for the actual physical longing for him. And the loneliness - the heart wrenching loneliness. I had never lived alone. I had roommates in college, had been married my whole life, and now I had my daughter, and our grief.

Grief changes you. Of course it does. You can’t go through an experience like losing a spouse and come out the same. It’s changed me for the good, and for the bad. I am more compassionate now. I have always been empathetic to other people, and now I feel it even deeper. 

I don’t sweat the small stuff, and if money can fix it, it’s small stuff. Things that used to bother me, no longer do. After cancer, nothing compares. 

I’m strangely insecure about a lot of things now. I never was before, but I feel very unsteady, and I am absolutely terrified to be hurt in a dating relationship. As if anything could hurt like losing Mike, but I feel like there is something wrong with me, and like everyone can see on the outside, the deep sadness and loneliness inside me.

What do you want others to know about grief?

The number one thing I want people who are new to grief to know is that there is no timetable for it. Don’t let other people grief-shame you. Everyone grieves differently, and even now I will be driving along, and remember a good time we had and smile, and then just as suddenly sob. 

Don’t worry about people judging you. People are always going to judge. I was so worried about what people thought of me early on, and I wish I hadn’t. You are never going to please everyone. The same person you give a bunch of stuff to, will be the same person complaining about what they didn’t get from you.

Death is expensive. Even with life insurance, it costs a bunch for a funeral, and the medical bills are crazy expensive. For that, you are still left with a dead spouse.

Look around you. Most of the people in your life today, won’t be here in a couple years. These are the secondary losses which can be almost as bad as losing your spouse. Life goes on, and the same people who said they would always be there for you, go back to living their lives, and you are a reminder of a sad past. Or they don’t like the way you are grieving, they think you are dating too soon, or they didn’t get the favorite vase they wanted. None of this is important, and if they are going to go, let them. There will be people who unexpectedly step in and are there for you. Embrace them, and forget about the rest. 

How can a person best be there to support a loved one who is grieving?

The best way to support a grieving person is to just show up. Don’t ask them what they need, just do it. I remember people telling me to let them know what I needed. I was never going to do that! The people who came over and cut our grass and trimmed our bushes were a godsend. I just didn’t have it in me to do these things. I also don’t ask people for help, so it was even harder for me. So, just show up and do something. Also, don’t tell the grieving person how to grieve. I hope you never have to experience cleaning out your husband's bedside commode while you are throwing up yourself from it, and haven't slept longer than 15 minutes at a time for weeks, but until you do, don’t judge how I am surviving the memory.

If I could go back to the beginning of my post loss journey, I would pull my people in closer. I wouldn’t allow myself to get hurt by the people who didn’t have my best interests in mind. I would be kinder to myself, and not be so impatient with my sadness.

I know this sounds terrible, but looking back If someone came to me and asked me if I would have married Mike all over again when he was alive I would have said yes. However, losing him and having to live the rest of my life alone I am not sure I would. Losing him has pretty much wrecked my life. 

I never in a million years thought I would have to live my life alone. I never expected to be in this place at my age. I did everything right in my life - went to college, got married, had a baby. Now I am alone.

What would you tell others who are going through something similar?

If I had to tell someone going through this anything it would be to get as much video of your person and letters in his handwriting - whatever you can get while he is living. Because the time is going to come when you are going to wish you had another photo, or video, or letter. I was so busy being the caregiver, and so exhausted all the time, I didn’t get enough. There could never be enough I suppose. Having to live the rest of my life with what I have, is tough.

Sit down and talk to your person. Ask the tough questions. Be emotionally present. The dishes can wait. At Mike's memorial service, which he planned in advance, his sister gave me a medallion necklace with a note engraved on the back in his handwriting. He included a special message. He did the same for my daughter, and his son. As special as these things are, I forgot I even had this. I found the note the other day, and remembered and it got me searching in my jewelry box. That is grief! How could I forget this important piece of jewelry? Go easy on yourself. You are doing well to be up and around, because grief is exhausting.

I would also recommend a support group. I was in a cancer support group, and a grief support group for 2 years. I had a couple of online grief support groups also through Facebook. These people are the only ones who get it. Lean into them. It helps. Don’t isolate yourself. Especially around the anniversary of his death, his birthday, your wedding anniversary.

It isn’t lost on me as I come up on the four year anniversary of Mike's death that he has been gone for longer than I knew him. This makes me very sad. It seems like I knew him for a day, and that he has been gone forever. I wonder if he would be proud of me. I sold our home, and moved to a different city, all by myself.  I did all the hard things by myself, like cleaning out his storage unit, selling his beloved motorcycle, scattering his ashes in both places he chose, all the while wearing the deep coat of sadness. 

What brings you joy now? 

I have taken up playing his favorite sport since he passed, and it gives me joy to think of how happy he would be if he knew. He always wanted me to golf with him, and now I finally have time. I have started exercising, and eating better because I realized after watching Mike die that without our health, we have nothing. I never took the time for this before, and everyone who is a caregiver knows that you are the last on the list. 

Anything else you’d like readers to know?

After almost four years, the grief has changed. It’s still present, It always will be. However, the intensity has lessened with time. Time is the only thing that really helps. I try not to get too tired, because that can lead me to depression and sadness. I spend a lot of time with my friends, laughing and listening to music. I still wish he was here every single day, but I don’t cry everyday anymore. I go hours without thinking of him, and I’ve started remembering the good, as the end fades in my memory.

I know that he will never be forgotten. Our shared dreams and memories are mine alone now, and that makes me sad, but I have accepted that this is my life now.

There is no happy ending to this story. The hero always dies no matter how I tell it. The heroine is still writing her story. I still have the opportunity to leave the world a better place than when I entered it. I still have lifelong relationships with my friends. I get to watch my beautiful daughter grow into adulthood, spend valuable time with my family, and experience moments of true joy.

Most of all, I have known the love of a good man. A man who had integrity, understood commitment, and stood with his feet firmly planted in the face of the worst kind of adversity, and enjoyed every minute of his life.

That, in itself, is enough.

Want to know more about Anne and her story? Follow her on Instagram at @annelikesalot.