Tag Archives: #cancer

The Day I Lost Tom Forever

It was the middle of the night when the phone rang. I woke up, startled, and stood up. An immense sense of dread washed over me; I was frozen. I couldn’t answer the phone. It was almost as if something was holding me back. Intuitively, I knew that Tom was gone. I didn’t need confirmation from the person on the other end of the line that it was over.

But what did I lose? What did I have? It was all a mystery to me then, as it is today—memories scattered to such a degree that I can’t even place them in chronological order. Wishes for a future never to be. Expectations never met. Questions never answered. All I could do was accept.

The terrible memories are the most persistent. However, with some thought, wonderful memories emerge and are more fulfilling. Where do I even start?

Today would be my brother Tom’s birthday. He would have been 84 today. But that was never to be; my brother died when he was 33 years old, and I was 20. We were just starting to form a connection with each other. It was nascent but had promise. I longed to know my brother, but circumstances were always against us.


I remember the news, but I don’t know where I was. Certainly, I heard it from my parents. My brother Tom, at 6’1” and husky build, seemed like a tower of health. However, he had gotten a cold that never went away, and when he went to the doctor, something rare in my family, simple blood work revealed a horrifying conclusion. My brother Tom had leukemia. The family GP recommended that he transfer his care to the University of Chicago. The local hospital was not capable of treating him. 

I was in my last year of college studying biology but had little medical knowledge. I planned to become a university professor and was interested in microbiology, not human physiology. The type of leukemia that my brother had generally responded to treatment. A cure recently developed, almost as if it was designed to help him. But then the reality of cancer hit.

When people talk about cancer, a particular veil of information is placed on it. No outsider understands the agony the individual and their family go through—perhaps that is for the best. There’s always an outpouring of sympathy and concern, but people move on. No one wants to hear lousy news, so the patient and the family tend to neutralize what they tell others. Sometimes, they do this to shield themselves. Tom was my first exposure to knowing someone on a close level who had cancer. This was my first time being upfront and in the center.

I was home from school for the summer, working as a Chicago Board of Education janitor. My father had used his clout in the board to get me the job. It was a summer program that hired college students to work in schools. This provided less expensive labor for the school’s many summer maintenance tasks and also provided students with jobs. I started these summer escapades years earlier and many years before I was eligible. You had to be  20 or 21 to get one of these jobs, and I started at 16. I was a tall kid but very much looked like a 16-year-old. I remember a union representative quizzing me about my age when he visited my job site. In my anxious state, I gave him a birth-date that aged me at 30 years. He raised his eyebrows but said nothing.

When my brother died, I remember one of the assistant school engineers coming to the funeral. I’m not even sure how he knew that my brother had died. I didn’t recall having much of a connection with this man. However, I still think of him fondly for his kindness in coming to comfort me that day. Acts of kindness do make a difference.

I wish I had more memories of my brother. I wish that we had done more things together. However, my brother was 13 years my senior. When I was 10, he was 23. His life was separated from mine.

I remember my brother Tom being big, strong, and dark in complexion. He had black hair from my mother’s side. I always liked my brother Tom. He was a kind soul, and I can’t remember any time that he made me feel bad.

The family consensus was that Tom was a bit on the morose side. This was based on his habit of sitting in his bedroom with the lights off while listening to the radio. However, I don’t know if that interpretation was wholly correct. I, too, like to sit in the dark. I don’t consider myself depressed; instead, I do it to tune out outside stimuli so I can think and concentrate. Was Tom the same?

One of my earliest memories of Tom is when he went off to college. I was around five then, and my parents and I drove him to Rensselaer, Indiana, so he could attend Saint Joseph’s College. I don’t have many memories of the college, but I remember being very impressed that he was going away to school.  

He had met a woman named Donna who worked with my sister Carol. She was some years older than Tom, and he fell madly in love with her. She was possessive and couldn’t deal with the fact that he was so far away. This meant that Tom was constantly returning to Chicago and not addressing his studies. I don’t know how long it took, I assume a year, but he failed out of school and returned home. Donna then dumped him. He gave away college for nothing.

He got an office job working for Union Carbide as he determined his next steps. He applied to multiple colleges, but many rejected him because of his academic failing at St. Joe’s. Eventually, one accepted him, Parsons College in Iowa. Tom attended Parsons and graduated with an excellent GPA, gaining a business degree. I remember attending his graduation with my parents. They were proud of his accomplishment. However, what I remember most was that it was a stormy day. At one point, I stood under a tree to shield myself. Suddenly, I felt tingling in my body and heard a massive crack and a boom above me. Lightning had hit the tree I was standing under, but I was unharmed. It was a miracle.

In this time frame, he met my sister Nancy’s friend, Lee. A romance developed, and then a marriage. I also remember that he was conscripted into the army at some point, or did he volunteer to shorten his time in service? 

I remember his wedding to Lee and his move to the Garfield Ridge neighborhood of Chicago. It was when he was married that he was diagnosed with leukemia. I recall visiting him at the University of Chicago hospitals. I remember how he went from being a hefty guy to skin and bones. I recall helping him into the car for a doctor’s visit. He was so skinny that his belted pants fell to his knees. I remember his voice going from strong to weak and raspy. I recall him being hospitalized and begging me for water, which he was not allowed due to an ileus.  I didn’t have the medical knowledge that I have now, and I was afraid even to give him a sip because I thought it would kill him. I still regret that decision. 

I also have a few other scattered memories of my brother. I remember him taking me to a James Bond movie when I was probably 12. I was thrilled to have him pay attention to me. My brother wrote me a few letters when I was in college, but I don’t remember receiving them. After my mother died, my father found some of the letters.  I suppose Tom didn’t have my address, so he gave them to my mom to mail to me, but life got in the way, and she forgot to do that. What a treasure it was to read them. There was no earth-shattering news, but they highlighted my brother’s wit and writing ability. It made me feel closer to him.

As I got older and our age difference narrowed, we slowly started to form an equal relationship. Sadly, his illness prevented any major progress in that area. With that said, I still have many warm thoughts for my brother Tom. I wish we had had more time together. I celebrate him and his life today. His birthday is February 8, 1941. Rest in peace, dear brother.

Cancer!! Part II

In February 2024 this website crashed for no apparent reason. Despite using professionals at GoDaddy.com it was impossible to restore anything after October 2021 (over 100 posts). I do have many of those post in draft form (no final edit or photos) and I have decided to repost them in that manner. I apologize for typos and other errors. How do I feel about losing all of my original work? Life goes on.

A family living with cancer.

In my post, Cancer Part One, I gave a timeline of our cancer journey over the last eight months. In this post, I’ll explore the journey’s psychological and emotional impact. This was the post that I wanted to write, but I had to offer the content of Part One to make sense of this writing

This post will explore the feelings of Julie, the kids, and me. However, it will emphasize my experience, not because my feelings are more important, but because it would be inaccurate to claim that I had complete knowledge of what the others are experiencing.

The genesis for today’s writings were several comments that we have heard from some individuals. Their sentiments can be summarized as follows:

“You all seem to be handling Julie’s diagnosis so well.”

“You are living in the present and seem to enjoy life.”

“You all seem to have a positive attitude.”

All of the above statements are true and accurate. However, they don’t address the entire situation. What is that whole situation? Well, that’s complicated.

As far as the above statements are concerned, they are the result of our personalities and the general way that both Julie and I approach life. Our kids had adopted many of the same characteristics.

Julie was raised in a stoic family. She is the most emotional in her family. I was raised in an emotionally huggy family; I am the most reserved member of my family. Our positions complement each other. I add the huggy quality, and she adds the sensible quality to our relationship.  

We both believe in changing what we can change and accepting what we cannot. It makes no sense to gnash our teeth over things we have no control over. It is also a massive waste of time. Every day on this earth is a gift. Each day is filled with both positive and negative events and experiences. We choose to focus on the positive things. Additionally, we do not want to waste a day worrying about inevitable or imagined events in the future. That is not to say that we ignore these things. We plan and prepare, but as a couple, we are not paralyzed by events that may or may not happen.  

As many of you know, I spent much of my career helping people recover from drug and alcohol addictions. People in recovery have many wise, if pithy, sayings. One of my favorites is, “If you have one foot in the past and one foot in the future, you are pissing on the present.” Before mindfulness became popular, I ascribed to the philosophy of living in the moment and appreciating where I was. Who knew that such thoughts would one day become trendy?

Over the last eight months, we have tried to live as normal of a life as we could as we adapted to the changing status of Julie’s health. I don’t feel that time consisted of lost months. There were good times, bad times, and a lot in between. 

I don’t think in a linear fashion, so I must digress.

Before I retired, I loved my work life and genuinely cared about many of my patients. They were people of courage and grace. However, working in my capacity also had its stresses. Let me bring that concept home to you. Let’s say you had a friend you cared about who was in crisis. You willingly gave them a call and did your absolute best to be respectful; you listened thoughtfully and offered requested advice. How would you feel after you got off the phone? I imagine you would feel good that you were there for your friend, but also emotionally and possibly physically exhausted. Imagine doing that 20 times in a single day and repeating it the next day and the day after. That was my job. Fantastically fulfilling and utterly exhausting. It isn’t easy to be responsible for the well-being of others, even if that contribution is only partial.

You may wonder about my fascination with Violet the campervan. Of course, I love being in nature, but Violet is a symbol of freedom for me. When traveling in Violet, my life is simple, and I am responsible only for myself. Violet lets me know that, on occasion, placing myself first is OK. It is OK to do something silly or something someone else may not approve of. It is OK to have fun for the sake of having fun. It is OK to explore for the sake of exploring. It is OK to be my natural self and not have to act in a certain doctorly way.  

Retirement has offered a similar experience. There is joy in learning about an irrelevant topic. There is joy for me to walk over to my friend Tom’s house for no other reason than to drink a cup of coffee and have a little conversation. There is joy in making dinner with my kids and talking about their day. There is joy in going to DQ for an ice cream run with Julie. None of these things change the world. Joy doesn’t have to change the world. When I was working two and a half jobs, there was little time for impractical joy. Every hour I was awake was parsed into 15-minute intervals.

Since Julie re-entered the paid workforce, I have taken over more and more of the necessary household tasks. I have no problem with doing what some may consider menial jobs, and I consider no necessary job as menial. However, I have worked hard to keep balance in my life as it would be easy to turn those jobs into a new career. Julie continued to do things around the house, and I involved my kids in some of the responsibilities of real life. 

I have also tried to push my own boundaries in new directions. I’m naturally shy, but I know how to be social. Despite being difficult, I have introduced myself to others and engaged with them. I feel guilty when traveling solo in Violet, but I want to explore places while I have my health. I have been open about my feelings with Julie and have been receptive to hers. I’m a lifelong learner who loves to see the similarities and differences in things. Do I really need a dozen cameras? No, but they make me happy, and I know quite a bit about cameras because of them. Over the years, I have tried to celebrate who I am. My retirement motto is, “If it is not hurting me or anyone else, it’s probably OK.”

These, and many other factors, have given me a wonderful retirement. I generally have good health and enough financial resources to do what I want. I also have enough common sense to modify, adjust, and redefine based on my current status and the needs of those close to me. Just as I communicate my feelings in this blog, I do the same with the people I love. If something pleases me, I tell them. If something bothers me, I tell them that too. How many times have I seen relationships fall apart because person A expected person B to read their mind?

However, my joyful dynamic has changed with recent events. For the moment, balance is out the window, and I have had to return my focus solely to others. This is no one’s fault; it is just how it is.  

Julie’s right leg doesn’t work very well. It has little sensation, and many of the muscles don’t function. She had great rehab at Marianjoy, but it is still common for her leg to buckle and for her to tumble. This is despite using techniques, a physical brace, and assistive devices like a walker or a wheelchair. We hope this situation will improve, but we have yet to determine.  

Julie needs assistance with activities that most of us would consider routine—taking a shower, getting something off a shelf, and using the stairs. Many of the things she has done all her adult life, like driving a car, are off-limits for now.

She is trying her best to do things and to contribute to the family, but she can only do so much. The other day she wanted to do a load of laundry. However, someone had to bring the basket down and position it. She had to use a grabber to get the clothes out of the washer, and someone had to help her get the clothes in and out of the dryer. Then someone had to carry the basket back upstairs. However, she tries even harder every day. She just informed me that she emptied the dishwasher this afternoon. And that was while she was also standing with her walker.

Julie wanted to go to the market and then to her office to check her mailbox. Simple, right? She had to ready herself. I called the store to see if they had an electric shopping cart. I was erroneously told, “No.” I had to position our car so Julie could get in. I had to collapse her wheelchair (WC) and load it (with difficulty) into the car. Julie then had to get herself and the walker into the car. At the grocer, I had to reassemble her WC (with difficulty). We then could only buy things that we could carry on her WC. Everything had to be loaded back into the car, and we drove to her office. We only used the walker there, but the path was long and complicated. Back home, I had to position the car so Julie could get out. I then had to pull the car up, get the WC out, and reassemble it. After I took the WC into the house, I had to bring in the groceries. A very simple trip turned into quite the morning, and that was with Julie trying her hardest to be as independent as possible.

Jobs like making every dinner have fallen completely on me. New jobs have been created, like ensuring no trip hazards on the floor or monitoring Julie’s shower. I’m OK visiting my friend, Tom, as he is only 5 minutes away, but I still have not worked up seeing my sisters, who live 30 minutes from me. At the moment, that is too far if Julie needs my help.

Let me emphasize that Julie is doing everything in her power to be as independent as possible. If fact, she may be doing too much. Also, my kids are very helpful and willing. They have been great.  I bought Julie an Apple Watch, so she will always have a way to call for help if needed. However, for the moment, my life is focused completely at home.

Over the next weeks and months, I’ll continue to try to find balance, but life is stressful at the moment. I am trying to do the right thing by her, but I’m not Superman. Eventually, I’ll find a way to do some exploring with Violet again, but not right now. 

An important part of what has kept Julie, the kids, and me afloat is other people. As an independent soul, this has surprised me. I wanted to share some of my feelings about this, as it may be helpful to understand those who are going through a difficult time. I’m going to be frank, as it makes no sense to couch what I’m saying. Please don’t take offense; none is intended.

I should also note that people are much more open when dealing with those who have cancer. A few decades ago, others would shun cancer victims. Not so anymore; yay for that

What is helpful:

I must offer a disclaimer here. In no way is the following a solicitation for services. We both realize that people have busy lives. No one owes us anything, and we are cool with that. However, the following things have been helpful, and some have even been wonderful.

-Letting us know that you are thinking about us, praying for us, etc. That can be via Facebook, a phone call, a text message, a card, whatever.

-A number of people have given Julie gifts, from flowers to prayer blankets. She is overwhelmed and feels loved. 

-A number of people have gifted us food in the form of snacks, cookies, dinners, meal cards, and other surprises. Personally, I have been overwhelmed by their generosity. I can’t tell you how grateful I have been not to have to make dinner or how happy the kids have been to get a treat. We feel loved.

-Don’t avoid us because Julie has cancer, but be respectful of her limitations and know that a visit or phone call may need to be shorter than usual. Call before you come over.

-If you visit, I’ll be happy to make you a cup of coffee and (if we have them) offer you a snack. It is harder for me to give you a full meal.

-Don’t be afraid to bring up the cancer topic, but it isn’t the only thing we want to discuss.

-Don’t avoid us; you can’t catch cancer.

-Don’t forget us. Kind humans tend to respond at the start of a crisis, but life goes on. Check in on us as time goes by.

What is not helpful:

-Recounting cancer horror stories from a friend of a friend.

-Offering unsolicited advice.

-Suggesting cures, “I saw a YouTube video where a medical expert cured his cancer by    drinking cat pee every day.” Crazy therapies are not helpful.

-Questioning our medical decisions because you YouTubed the topic and now consider yourself an expert. You are not.

-Not talking about cancer or talking too much about cancer. We are dealing with cancer, but we also have a life.

-Saying things like, “Call me if you need anything.” This may be sincere, but it feels disingenuous.

-Saying things like, “I wish I could help, but I’m too (whatever).” You don’t have to do anything, that’s OK. But such statements serve no purpose. I don’t want to make you feel better about your lack of involvement. 

-Visiting too long. Julie loves visitors, but she gets tired.

-Not visiting/calling because you don’t want to be a burden. Julie loves a nice visit. We want to know that you care about us.

-Assuming something without asking us. We are happy to let you know, and if we don’t want to say something, we will let you know that too.

I said at the beginning of this post that it was complicated. With that said, Julie and I have been blown away by all of the kindness that we have received. I cannot express how much it has meant to us. You have made us feel less alone. 

We often hear about the evil in the world. However, time and time again, I see the true good in people. Sometimes a tragedy brings that out even more. I am so proud to call many of you friends. What an honor for me to know you.

Peace,

Mike