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