Statins

My Secret Illness

Today, I am going to share with you a secret. I’m going to tell you about my secret illness.  Only a few people know about it, and now you will be one of them.

This is my story and is NOT meant to be medical advice.  If you have medical concerns, talk to your doctor. Everyone is different, don’t be foolish.

When you talk about any life-changing event, it is good to give a timeline.  However, this is one of the ways that my brain fails me.  I tend to process data a bit differently than most. I remember things in terms of how they relate to other things. This is different from the majority of folks who are more linear in their thinking. Because of this, it is hard for me to remember phone numbers, names, and birthdays, as they only connect loosely with other things. I can only approximate timelines for the same reason. Confused?  It will all make sense in the next paragraph.

A reasonable question would be, “When did your secret illness start?”  A long time ago, but I can’t give you an exact date.  However, I can tie it to an event in my life, my involvement with the Indian Princesses.  With that said, I was ill for years prior to that.

Indian Princesses was a YMCA group for dads and their grade 1-3 aged school daughters.  It has since been rebranded as the “Y Guides,” as its former title was offensive to some. Both Kathryn and Grace participated in the program.

Grace is now in graduate school. The incident happened when she was in first grade. I’ll call it the campout incident. At least once a year, tribes would participate in an overnight campout. Huge groups would gather for these events.  I recall sitting in my study, devastated that I would be attending a campout the following weekend.  

If you know me, you are probably scratching your head.  My favorite place to be is in nature, and camping is one of my favorite things.  Additionally, I love spending time with my kids. This was an extremely well-organized event.  It was meticulously planned and executed precisely.  The girls loved going as there were many fun activities for them to do.  Lastly, the dads in my tribe were nice guys.  Very welcoming and decent. 

Based on the above, the Princess campout should have been something that I was looking forward to.  So why was I nearly in tears?  I was so ill that spending 2 days camping seemed impossible.

What was this mysterious illness?  It took me decades to find out.  I’m a good physician, but I had no idea of the cause of my sickness. Did I seek medical attention?  Of course.  I would do this in waves: seeing doctors, going through tests, and trying traditional and complementary treatments.  Nothing would help.  I would abandon medical treatments only to return for another round of tests, sometimes years later.  Decades of being sick, countless treatments, and many diagnoses.  I saw multiple primary care physicians and multiple specialists.

Of course, I had all the basic tests, and their results were normal. I also had many other tests ranging from MRIs to EMGs to very exotic blood work. One doctor thought I could have MS; another felt the problem could be sleep apnea; yet another thought I was suffering from autoimmune hepatitis. I was diagnosed with a serious neurological illness, Myasthenia Gravis, and started treatment, but that turned out to be a red herring. Multiple doctors, multiple diagnoses, multiple treatments, none helped, and I was seeing my life fade away.

One true diagnosis was confirmed. I do have autoimmune neuropathy.  That impacts my balance but didn’t cause my other symptoms.

Could the problem be psychological?  I’m an expert here, but perhaps I was missing something.  I wasn’t feeling depressed, and I’m a pretty stable guy. However, I asked a friend who is a well-respected psychiatrist to evaluate me comprehensively. He concluded that my psychological state was boringly normal.

What was I experiencing?  Several symptoms, when combined, ruined my life. The first one was insomnia.  I have always been a poor sleeper, but this was exponentially different.  I was almost never able to get a whole night’s sleep.  I tried everything: behavioral techniques, over-the-counter treatments, and prescription medications.  Nothing helped.  

The second was incredible fatigue.  There is no way to describe the fatigue I was experiencing adequately.  Imagine you were recovering from a serious illness but no longer acutely sick.  You decide to do something simple, like showering or making a sandwich.  No big deal until you start the activity only to realize that it felt like you were climbing Mount Everest.  That is how I felt every single day. Resting had temporary benefits, but I would only go from 10% energy to 15%. If I did anything, I would drop below 10%.

Along with fatigue, I had shortness of breath, my third symptom.  My blood oxygen levels were fine, so I was getting enough oxygen but felt I wasn’t getting enough air.

When you are so tired, your ability to be detail-oriented is compromised. In my case, I retained the ability to think and appropriately treat my patients.  However, routine tasks were tough. I was a doctor who completed their progress notes, returned calls, and went above and beyond. I felt proud that I was responsible. However, these simple things were incredibly difficult, so I had to develop effective yet simple solutions.  I did that using a variety of techniques, some technical and other organizational.  

For example, I kept return phone call slips on a specific part of my desk.  I returned calls throughout the day so I would have the energy to do this simple task.  After I returned a call, I would mark the note with a slash and place it in a different pile.  When I documented the note in the chart, I added another slash to the note (making an “X” on it) and put it in a third pile to be filed in the chart. That way, I knew that I returned every call. Everything I did was like this to ensure that my patients got the best care possible despite my disability.  I developed a technique for every routine task.

My fourth symptom was muscle weakness. This was the symptom that impacted me the most. I felt like I was dying.  I was completely weak and incapable of doing almost anything.  I wrote in my journal, “Sitting in a chair seems like an Olympic sport.”  I recall seeing patients in a VA clinic exam room with a dirty tile floor, wishing I could lie on it as I was too weak to sit in a chair. If you understand how poorly VAs were cleaned, you will know the magnitude of this thought. A simple event like walking a block with my young children was impossible.  Just about anything normal in life was impossible. There are no words to describe how weak and sick I felt.  Yet, no one would know it by looking at me.  I looked perfectly normal and acted perfectly normal. I hid my illness from almost everyone.

I tried many behavioral things to cope, some minor and others drastic. One of the most drastic things I did was relinquish my partnerships in the successful clinic I co-founded.  Running a clinic is a tremendous amount of work, and it is also very stressful. I thought that eliminating that stress would improve my health. I continued to work at Genesis as a contractor and made more changes in my life. I remained sick.

Other dynamics were playing out in my marriage.  Julie was a stay a home mom. I’m a take-charge guy who felt my responsibility was to financially support the family at a level that they deserved.

My blue-collar background didn’t afford me a sense of financial security, sometimes to the point of craziness. Many doctors rejoice when a patient fails an appointment because they now have time to do paperwork or take a little break.  When my patients would fail an appointment, I would panic and catastrophize that I must be doing something wrong or that my very busy and successful private practice was falling apart. My private practice income allowed me to spend about half of my time elsewhere, providing care to the underserved, which was my passion. 

Combining my desire to serve the underserved with my fear that I couldn’t provide for my family, I worked a 60-plus hour week.  Every few years, I would rein in my workload and change my behaviors, but within a year, I would be where I started. 

Julie has her own financial insecurities and money fears, plus, we live in an affluent area where it is common for families to do uncommonly expensive things. Everyone was buying more or doing more than we were. Or at least that was the way it appeared on the surface. It is easy to pick a vacation from family A, add it to a new car from family B, and feel like we were not keeping up.

I had a good professional reputation and multiple board certifications, so I often got job offers, including part-time opportunities.  I would think, “Maybe I should add that new job; after all, it would only be 5 or 10 hours more a week.”  However, I couldn’t cope with what I was already doing.

I often told Julie how sick I felt, but I look normal on the surface. I would tell Julie about various work opportunities, hoping she would tell me I should not take them and instead I should cut down on what I was already doing. I was looking for permission to do less. Instead, she would say that I should consider them. I needed someone to put the brakes on me; that person should have been me, not Julie. It was not Julie’s responsibility to take care of me.  It was my responsibility. However, I was in conflict as I thought I had been given an opportunity and should not squander it. I also wanted Julie’s approval.

Finally, at age 55, I made long-term plans to save my life.  I announced in no uncertain terms that I would retire at 65, and I started to plan for that to happen.  Julie’s dad continued working into his 80s, so I don’t think she thought I was serious.  But I was.

Then something strange happened in 2015.  A variety of circumstances joined forces, and something impossible happened.  I started to lose a lot of weight. I was still feeling terrible, but I began to force myself to exercise more.  I changed my eating habits and eliminated concentrated forms of sugar. I was even able to stop prescription meds for blood pressure and cholesterol as those numbers were normalizing. Without me realizing it, I was starting to feel better.  Yes, I had the typical aches and pains for my age, and honestly, I have never been a ball of energy.  However, I could do things, walk, ride my bike, and go to the grocery store without feeling like I was about to die. In 2018 I bought a cargo van and converted it into Violet the campervan.  The thought of exploring would have been impossible years earlier but now became a perfectly reasonable idea. The world was opening up to me.  I was walking every single day, and I liked it.  I was traveling to distant towns with my camera to do architectural photography. I was driving solo to far-off National Parks, where I would hike rocky trails. I had been given my life back, but how?

It wasn’t just the weight loss, so I initially targeted stopping my excessive sugar use.  Sugar is inflammatory, so it made sense that eliminating it was why I felt better.  It turned out that sugar possibly contributed to my symptoms, but it was not the primary cause.

COVID happened, and I slowly started to regain weight.  Additionally, I fell back into the sugar trap. However, my symptoms didn’t return.  I was still walking almost every day, going on trips, and doing things.

My mildly elevated blood pressure and cholesterol returned with my increased poundage.  My doctor advised that I restart the meds that had effectively worked in the past. I complied as I wanted to continue my good health. I was on track.

At the beginning of this year, my symptoms started to return, with muscle soreness and increased stiffness.  Additionally, I had ever-increasing fatigue, and my sleep became more sporadic. I started to feel short of breath. I started to experience the extreme muscle weakness that I knew so well from the past. To say that I was devastated would have been an understatement.  I was still walking most days, but it was no longer enjoyable, and every step was an effort.  I was getting the feeling that I was too weak to even sit in a chair.  I wanted to lay on the floor again. Yes, I was eating sugar, but nothing like I had. Yes, I was stressed about Julie’s illness, but I was coping well. My life had been going so well since 2015, but now I was sick again. 

Then clarity came to me.  I had restarted Crestor (rosuvastatin), a statin drug that controls cholesterol. Statins are the most commonly prescribed drugs in the US. That was around the time that I developed sore muscles and stiffness.  I knew that these were common side effects of this medication. I road out those side effects, and they did subside.

I didn’t make the connection with my long-term returning symptoms.  But eventually, I did.  I stopped the Crestor, and slowly my weakness faded, I was less short of breath, my insomnia improved, and my fatigue returned to its prior level.  I still have symptoms on some days, but they are less severe. On other days, I’m almost symptom-free.

I’m a medical doctor who attended one of the country’s best medical schools.  Some of my friends, who are doctors, were aware of my symptoms.  I have seen numerous primary care and specialist doctors over the years.  They were all smart, competent, and dedicated to solving my mystery illness.  None of us considered that an exceptionally commonly used drug could be the cause of the debilitating problems that robbed me of my life.  But it appears that it was.  Holy crap.

Skinny Mike
Escaping poverty, Poverty

Poor People Should Pull Themselves Up By Their Bootstraps

My friend, Tom, wanted to do something nice for me while Julie was hospitalized. He surprised me by taking me to breakfast at our favorite spot in the West Loop. There was a problem on I-290, so we exited the expressway in Oak Park and treaded down Madison Avenue.

As we crossed Austin Avenue into Chicago, I was immediately struck by a drastic change. The streets were dirtier; the buildings were in poorer repair. More shocking were the types of businesses, both present and absent. Many fast food restaurants, pre-paid cell phone stores, haircare stores, and storefront churches existed. Although we were driving on a major thoroughfare, I saw no real grocery stores, hardware stores, or other typical shops that were present just west of Austin in Oak Park. The difference was very pronounced. Eventually, we arrived in the toney West Loop—a place of trendy apartments, fabulous restaurants, and well-manicured streets. I have to admit that I felt a sense of relief as I entered familiar territory. However, I also felt a sense of shame. 

I write this post from my study, a room in my house dedicated to me. Next to me is a mullioned window that overlooks a beautiful suburban street. Within a 10-minute drive from my house are at least ten different grocery stores and five gigantic hardware stores. I can access every restaurant imaginable at that same distance, from ethnic to upscale. I drive a nice car and moan that I just spent almost $2000.00 to repair it, but I could afford it. My kids got to go to some of the best schools in the country, and our town’s library is considered the best of any community of its size. Our city parks are safe and well-equipped. The sports teams have the latest gear. The schools have the best lab equipment, computers, smart boards, and teachers.  

Not bad for a once blue-collar kid who worked hard and had a dream, but hold on, that is not where I’m going.

Yes, I worked hard to get to where I am. Yes, I sacrificed a lot to get there. Yes, my current life is better than my childhood life. So that’s the answer. Poor people are poor because they are lazy, stupid, and immoral. Oh, and of course, they are all dangerous criminals. Just watch YouTube to see those scoundrels shoplifting. Stores are closing because everyone who goes into them steals something. Why don’t they work hard like I did? It is not my responsibility to help them out. I advanced my life; they should do the same. Haven’t they heard about pulling themselves up by their bootstraps? Geez!

Of course, I’m being sarcastic. Each barrier that we place takes energy and effort to overcome. Place enough obstacles, and escape is almost impossible. My blue-collar childhood was nothing like I saw in Chicago’s South Austin neighborhood. I lived in a house we owned; there was a branch library, grocery store, drugstore, and hardware store around the corner. We always had food on the table. My parents were invested in my education. I had older siblings who I would emulate. My growing up was not deluxe, but compared to someone growing up in poverty, I was living the life of a millionaire. 

What would it be like to take several buses to just buy a gallon of milk? What would it be like to live in a neighborhood ruled by gangs, where police are viewed with fear instead of welcomed as peacekeepers? What would it be like to grow up in an unstable family or with a parent working multiple jobs just to put food on the table? What would it be like to live in a neighborhood where dropping out of school was the norm? What would it be like not to know how to appropriately fill out a college application and be unaware of who to ask for help?  

These are just a few things people in poverty must deal with. My kids grew up with a highly educated stay-at-home mom. Their lives were enriched in every way possible. They were provided with experiences at every turn. Yes, they are bright and work hard. However, their energy could be devoted to academic pursuits rather than figuring out how to get food for supper. I give them total credit for their successes. However, their paths were greased by privilege.

It is easy to blame people experiencing poverty for being poor. It is easy to look at a small minority of criminals and vilify an entire group. It is easy to look the other way. But at what cost? I don’t know how to fix this problem, but I know it is a problem.  

My good friend Ralph just sent me a link to a podcast that explores some barriers to people who strive to extricate themselves from poverty. It approaches the topic in a way I had not thought of before. It is an excellent podcast and a good listen, so I am sharing the link with you. 

Peace

Mike

Link to podcast below:

https://podcasts.apple.com/us/podcast/hidden-brain/id1028908750?i=1000616725013

Uncategorized

Cancer! Part II

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 contents of Part One for others 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 

Uncategorized

Cancer! Part I

It started in London, but I was unaware.  It became obvious in Paris, and it was impossible to avoid.  I love to walk, but Julie has always been the athlete in the family.  If fact, she requested and got a Peloton for her last birthday. 

We were walking the streets of Paris, and she was lagging behind me.  Often, she would signal me to stop as she needed a break.  Naturally, I inquired why. Julie was experiencing sciatic-like pain.  However, if she rested for a bit, it would subside. I had had sciatica in the past.  It is miserable but temporary. I didn’t think much about it.  Despite her physical limitations, we had a fantastic trip.  Soon it was time to return to Naperville.

Back home and I gave Julie some standard doctor recommendations.  She found some exercises on YouTube and tried to do them, but they seemed to make her symptoms worse.  It was clear that her sciatic pain wasn’t going away.

At that time, our daughter, Grace, was applying to PA school and was having great success.  She was accepted to and considered attending a prestigious school in Washington, D.C., and wanted to visit the campus and the surroundings. Julie was born in D.C. (her father was in the CIA at the time) and went to tag along; however, her sciatica was worsening, and she wasn’t sure she could do all the walking. 

She set up an appointment with an ortho doc, who did a cursory exam and prescribed a course of oral steroids.  With pills in her purse, she went on the trip. Unfortunately, they did little to help her ever-worsening symptoms. 

Julie and I felt that her symptoms were no longer consistent with typical sciatica, and she pressed the doctor for an MRI.  However, he insisted that she complete a course of physical therapy first, which she did in December.  Her symptoms only worsened. She returned to the doctor and once again asked for an MRI. This time he agreed and ordered an MRI without contrast.

I had wanted to go the RTR (Rubber Tramp Rendevous) in Arizona for years, and I had tried to convince everyone from Julie, to Nancy and Mike, and even my friend, Tom, to accompany me.  All to no avail. It was clear that if I ever were going to do it, I would have to do it solo. I loaded Violet the campervan, plugged in the coordinates for Quartzite, Arizona, and started the long journey.  

I wrote about that experience in a previous post.  I absolutely loved being among fellow van dwellers, many of whom are on the oddball side, but in the best way possible. If you have read my previous post, you know I’m also an oddball.  Oddballs don’t fit into any category; they are a category of exclusion. I ignored my shyness and met all sorts of folks on my adventure.  The RTR attracts individuals without a lot of resources.  However, they are amazingly clever and make the most of what they have.  Everyone that I met was incredibly nice.  The RTR isn’t about competition; it is about cooperation.  I loved camping in the desert and meeting these folks.  

The RTR runs for about a week.  I was planning on staying for six days of the meet-up. However, around day four, I got a text from Julie.  “Can you call me?”  I did.

Julie wanted to read me the results of her MRI.  There were quite a few anomalies, but most were minor—bulged discs and a small descending aneurysm.  I translated my medical knowledge into non-medical lingo as she read them off.  Then, she read the last impression. “A large solid mass in the right pelvic region in proximity of the L5 nerve root.”  “What?” I said.  Can you read that back to me again?”  She did. “Take a screenshot and send it to me.” She did. We discussed the implication of this finding, and our conversation ended with me saying, “I’m leaving for home.”  I drove back to Arizona to Naperville in two days.  

Oddly, the ortho doc never called us with the findings.  We eventually called him.  By then, we were both on high alert.  Being a doctor for decades, I know how the system works, what buzzwords to use, and how to get past the red tape.  The ortho doctor never had a follow-up visit; he just left a message that Julie needed to see a gynecologist. I wasn’t impressed.

She was able to make an appointment with a gynecologist fairly rapidly and reported that the doctor was kind. He looked at the MRI and advised that Julie see a gyne oncologist. Julie had to go to our group’s website, make random phone calls, and plead her case to be seen sooner rather than later.  It was all very stressful for her and for me too. I think we should have contacted our PCP to assist us, but no one suggested that, and our mutual state of mind was in crisis mode, not logical thinking mode.

The gyne/onc appointment was three weeks out, and I suggested that Julie call to see if they could order any additional tests in the interim, as this could save time in a process that already seemed to be taking too long. She did, and an MRI with contrast was ordered.  The results came back, and they weren’t good. This wasn’t a gynecological finding; it clearly involved the important L5 nerve root, which offers sensory and motor activity to much of the leg. Once again, we didn’t hear from the doctor, and we wound up contacting him.  In fairness, it is possible that he would have called on his own if we had given him enough time.

I already knew the answer, but he confirmed that Julie needed to see a neurosurgeon.  Our group did not have a neurosurgeon, and once again, we were left to fend for ourselves. I could coach Julie, but she had to do the legwork.  She was working full-time, and only she knew her schedule and symptoms. Hours on the computer, endless phone calls.  This was one of the most stressful times as we didn’t have the familiarity of our medical group; Julie was calling phone numbers with the hope that someone could see her quickly. It was really terrible. By then, it was clear that this was a tumor, and there was a strong likelihood that it was cancerous based on its size and strange location.  Beyond that, I could glean no further information from the limited data available. We felt like we were blowing in the wind. Yes, I’m a physician, and Julie is a psychologist.  We understand the medical system, but we were a family in crisis, not clinicians. We didn’t have a logical separation between treatment needs and personal boundaries.

Through her persistence, she set up two appointments with neurosurgeons.  One doctor was at our local Edward Hospital, and the other was downtown at my alma mater, Northwestern. She sent them both a copy of the MRI with contrast, and both places quickly shifted her to different neurosurgeons based on the unusual qualities of those findings.  We felt a sense of relief when she had finally secured the appointments.  

We first met with the Edward neurosurgeon.  He was incredibly nice and had recently relocated from Northwestern to build the neurosurgery program at Edward.  He informed us that the tumor was extremely rare and that surgery would be incredibly complex.  He had the expertise to do the surgery, but his team at Edward was still being developed and was not yet ready for such a difficult operation. He knew our Northwestern doctor and thought highly of him.  He also suggested the head of the department at Northwestern; both doctors were experts in tumors of the spine. He would call them with his impression. Now more waiting, but we had a sense that there was communication and a plan of some sort was developing.  We were relieved.

I honestly don’t remember how long we waited for the Northwestern appointment; I’m guessing weeks.  I’m not a big fan of driving downtown; I’m a bit phobic about it. However, it had to be done, and I was going to do it.  By then, Julie was having escalating symptoms, and it was becoming increasingly difficult for her to do the most basic things like standing or walking a short distance. She was incapable of driving all the way downtown, so I had to figure out a way to do it.

For me, knowledge is power, and I spent an afternoon studying maps, looking at satellite images, and plotting various routes using Google Map’s ability to predict traffic patterns based on the time of day.  I also have a thing about being late, as I think that it is both selfish and rude to think that my time is more important than someone else’s.  Julie gets this about me, so she was willing to leave generously early for the appointment. We set out for our appointment and got about halfway there when the doctor called to say that he had been exposed to COVID and had to reschedule the appointment.  Gasp!  More delays. 

Finally, we drove downtown.  I concentrated on the road, breathing, and I tried not to grind my teeth. Yes, driving downtown is not easy for me, but everything in life doesn’t have to be easy.  Recognizing a weakness and then figuring out a solution is more important.  Knowledge of the route and ample transit time was what I came up with.  Hardly a perfect solution, but good enough.  We made it to Northwestern.

The neurosurgeon there was also incredibly nice and spent a lot of time with us.  Like the Edward Hospital doctor, he informed us that surgical removal of the tumor would be extremely complicated and difficult.  It would involve multiple teams from various disciplines. It would be a big deal. Northwestern operates on a team model, where cases are presented to a committee of doctors from various disciplines.  He would discuss the case at the next appropriate tumor board and inform us of their recommendations. More waiting.  He also wanted us to see a neuro-oncologist at NMH, another doctor, but luckily the appointment wasn’t weeks away. 

That doctor was also really caring.  He said Julie needed a biopsy, which would be difficult to obtain due to the tumor’s location.  We voiced our concern that everything has taken so long that it was now months since we started our journey.  The doctor picked up the phone and called in a favor.  The biopsy would be the following week.

Another trip to NMH, a biopsy, and then waiting for results. The results were unusual, to say the least.  This tumor was a sarcoma, which are rare tumors.  However, it was also a rare type of sarcoma. Further, parts of the tumor appeared benign and other parts were cancerous. It was possible that it could respond to novel monoclonal chemotherapy used for blood cancers, and we were sent to a heme-oncologist doctor—more waiting.

That doctor concurred that chemotherapy MIGHT work, but there wasn’t a lot of research data on using that agent with this cancer.  This somewhat experimental use would require additional permission from our insurance company.  He would work on getting that permission and bringing the case to another tumor board at the hospital. More waiting

He did get approval for the novel chemotherapy, but we found out that its impact, if any, would take 6 months or more to work. The chairman of the Department of Neurosurgery was at that tumor board meeting and wanted to meet with us.  He thought the tumor should be removed, and peeling it from the nerve may be possible.  Otherwise, they would have to remove not only L5 but the L4-S3 nerve roots with devastating consequences.

During these months, Julie’s pain did not remain static.  It was significantly worsening every few days. Work was becoming impossible.  She couldn’t stand for more than a minute or two; she couldn’t sit in hard chairs, then any chair. Sleeping became difficult, with her waking up in pain every few hours.  She had trouble walking very short distances.  She was seeing a pain doctor and was up to the maximum dose of a nerve pain medication, and she was also taking the maximum dose of an NSAID as well as a powerful opiate at bedtime.  All of this wasn’t touching her pain, but it was making her mentally cloudy-a no-go for someone who makes their living with their brain. A steroid epidural was recommended, with the hope that it would provide a few months of relief.  It helped for less than a week.

We met with neurosurgeon #3, the chairman of the department.  He said he would work with neurosurgeon #2 and the chief resident of neurosurgery in the surgery.  In addition, the head of plastic surgery would be there as additional reconstruction work needed to be done. There would also be a general surgery team present, plus a variety of anesthesiologists. They would book the operating suite for 8 hours, and the minimum time in the hospital would be 5 days. When you have no options, the best is the only one given.  We took it.

We also needed to get a PET scan, a test that looks at metabolic activity and is very sensitive at locating additional tumors.  This was another struggle, but this time we had the foresight of contacting our PCP and asking him for help.  Although he was far removed from the case by that point, he got us an appointment.  Thank you, Dr. Lee-you are a peach. However, in the end, we had to go back to Northwestern for the PET scan, but it felt good that we had a doctor who was not only concerned but also willing to extend himself when he technically didn’t have to. 

Now all we had to do was to schedule the operation.  That meant scheduling the head of neurosurgery, his second in command, the chief resident of neurosurgery, the head of plastics, a general surgeon, and several anesthesiologists for the same 8-hour block. That should be easy-not.

Finally, all was scheduled for June 8th.  Remember that our first doctor’s appointment was in early November.  

For some reason, I thought I should go to the surgery solo.  I didn’t want to disturb the kids’ lives.  Crazy, I know-and they thought likewise. They would hear none of it; they were all going. 

In the wee hours on January 8th, we assembled.  In my compulsive way, I told the kids to bring things to occupy themselves.  This was a silly thing to do as they are all competent people who had already planned for the day. I believe that I also reminded them to bring their phone chargers… as if they would forget such things.

Each of us brought stuff, from schoolwork to novels.  The hours ticked on with an automatic text message every two hours to say, “The operating is proceeding as expected.”

First, I got a call from Dr. Wolinsky (head of neurosurgery) saying that his portion of the operation was complete.  He was able to peel off the tumor, which was the size of a peach. However, it was unclear how L5 would respond.  Hours later, I got a call from the head of plastics saying that his portion of the operation had been completed and that they were closing Julie up.  The operation took 7 hours, and she was in recovery for over 3 hours.  Julie lost so much blood that her hemoglobin dropped to 7, with the normal range for women being between 12-16.  The 7 was after getting blood transfusions.

Julie spent 4 days in the ICU, then a number of days on a med/surg floor before being transferred to Marianjoy Rehab Hospital.  Her total time in the hospital was nearly a month. Naturally, we visited her every day.  She has worked hard, but at present, she has very limited use of her right leg.  She is learning ways to ambulate with a walker and is using assistive devices now that she is home.  We are hopeful that L5 might wake up or at least return in some partial form, but that is uncertain.

Although she still has pain, it seems to be more from the recruitment of new muscles.  The horrific debilitating pain in her lower back and leg seems absent.  Her numbness continues.  Every day I see improvement in her ability to adapt.  I encourage this but don’t want to push her too far.  She is working hard.

Many have told us how surprised they were to see the way that we coped with the diagnosis. Their observations have truth.

However, the journey has been horrific, and some of that could have been avoided.  Yes, the very long wait (8 months between first contact and surgery) was terrible as Julie continued to suffer.  However, we used that time to learn more about her diagnosis and how to prepare for the future.  The biggest trauma was feeling like we had to do so much of the work on our own.  We are medical professionals, but that only goes so far. We were in crisis and just trying to function. I believe that we should have contacted our PCP earlier on.  He is a great guy, but no one told us to do this; the specialist doctors just gave random commands like, “You need to see a gynecologist,” or “You should find a neurosurgeon, but we don’t have one on staff.”  Often we never even heard from the doctors; we reviewed the test results and called them. We would then get a message back or possibly a call from one of their underlings. No one said, “Come in and let’s talk about it,” or “Our office will arrange for you to see Dr. … ASAP.”  We were just left to blow in the wind as we were dealing with terrifying news. For me, the worst time was when we were told to find a neurosurgeon but given no additional information.  Where should we go?  What kinds of neurosurgeons were we looking for?  What should we tell them?  How quickly did we have to see them?  None of this information was provided.  It was by the grace of God that Julie was not only able to make appointments but that we got the doctors that we did.  

The first neurosurgeon (Dr. Jones) couldn’t do the operation but gave us information and called Northwestern to inform the doctors there.  The second neurosurgeon (Dr. Swong) was nice, respectful, and encouraging, as was the third neurosurgeon (Dr. Wolinsky). In fact, all of the NMH docs were wonderful, except the pain doc.  He was OK but treated Julie like she was a drug addict because his methods weren’t working. Even so, he did his job and wasn’t too bad. However, it does bug me when a doctor blames a patient because he can’t remedy their problem.

There is likely more to come, radiation, possible proton therapy, and who knows what else. We have been cared for since we plugged into the Northwestern system.  There was a plan, although it changed from week to week.  However, we knew it was changing because the team was getting more information and opinions and thinking about more options.  You can’t fault them for that.

We also had excellent care at both hospitals.  I was proud that I went to Northwestern for med school and my residency.  Marianjoy was… well, a joy.  

You may ask why our family will stay with the extremely large medical group that we currently use.  Honestly, it is because of our PCP, Dr. John Lee.  He is smart, respectful, compassionate, responds to inquiries, and is a good guy.  I like to think of him as an Asian Dr. Welby. Most of our medical needs are typical, and Julie is already plugged into the Northwestern system for her cancer treatment.  However, she will continue with Dr. Lee for her regular medical stuff.

We have a long way to go—Julie as an individual and our family.  But we are on our way. In the next post, I’ll talk a bit about our emotional journey.  In that post, I’ll emphasize my feelings.  I don’t think they are any more important than Julie’s or the kids’.  Rather, I know what is going on with me more than I know what is going on with the others.

Peace

Mike

We all waited during the surgery, each with our own distraction.
Forcing a smile in the ICU.
Visiting mom post-surgery. Julie had a fantastic view; too bad she couldn’t enjoy it.
Learning how to walk again. Marianjoy has a practice apartment where patients can re-develop necessary life skills.
Practicing walking with William as her assistant.
Getting ready to go home. Wonderful and terrifying.
Tom helped me install this grab bar.
Our shower now has more of a “hospital look.”
We went on a little 4th of July walk. Julie made it 3 blocks but paid for it the next day.
family, Family relationships, family traditions, spending time with family

On Ed And Anne Kuna

My cousin, Ken, kindly commented on my last post and mentioned that I should write about my mom, Annie.  I thought about it, and it sounded like a good idea.  This post will also give me the opportunity to write a more balanced remembrance of my dad.

I write these posts for my kids and try to be honest and transparent. When I mention my dad, it is often in a less-than-positive light.  However, that doesn’t mean that he didn’t have positive qualities. Additionally, he was a product of his environment.  Roles for men and women were rigid for someone born in 1910.  This was compounded by his 1st generation status, which dictated its own behavioral compliance. In addition, my dad was raised in a large family that in itself was controlled by rigid rules of conduct.  

I can’t say I knew my dad’s dad, although I saw him a hundred times.  My grandparents only spoke Slovak, a language that I didn’t speak. Interestingly,  I eventually learned that my grandfather was fluent in English. His pride demanded that everyone address him in Slovak; there was no flexibility.  I remember my grandpa as a frail old man who spent most of his time in bed. However, when I see photographs of him from his younger days, he appeared very differently.  In those images, he is tall, strong, and very good-looking. Apparently, he was also very strong-willed. My father would tell stories where my grandfather would remember some transgression that my father committed weeks earlier.  He would then wake up my father and beat him.  My dad said he frequently didn’t even know the reason why.

My dad left school after the 8th grade.  He was a bright guy, and it was common for students to continue on to high school, but he had to support his brother, who was attending college.  His matriculation into the workforce was at his parent’s insistence; my father said he was happy to do it for the family.  My uncle was on track to become a priest, and in the Slovak circles of the day, there was no higher honor that a family could obtain. No family sacrifice was too great.  Eventually, my uncle decided that religious life was not for him and married my Aunt Rose.  I am grateful that union produced some of my wonderful cousins. My grandparent’s disappointment became my blessing.

My dad was also a product of the Great Depression and the deprivation and stress that era created. As an interesting aside, he had a secret weapon; apparently, he was so good-looking in his youth that girls would swoon over him (reported by multiple sources). 

Despite his difficulties, he eventually became the Chief Operating Engineer of one of the largest high schools in Chicago. He consistently worked and supported his family.  He was a handy guy who could fix many things.  He took care of my mother when her health failed.  He supported my educational efforts.   

I recognize the traumas that he overcame, and I respect his efforts to succeed.  As I said in previous posts, he was not an evil person.  The two of us didn’t gel.  He needed a standard issue, son, and that wasn’t me.  Yet, his disappointment paradoxically impacted me and played a key role in my development. I became self-reliant, an excellent problem solver, responsible, and independent.  Those qualities have served me well throughout my life.  Every coin has two sides. 

My dad was just half of my parental equation; the other half was my mom, Annie. Just like my dad, she had her flaws.  However, that is not the purpose of today’s writing.

My mom was also raised in a very large Slovak family, where the last three children were girls.  She was sandwiched between my Aunt Mary and my Aunt Lill. My mother admitted that her father was an alcoholic, something shocking to say in the day.  She noted that he was nicest when he was drunk and meanest when sober.  He worked as a maintenance man for a book binding company. My mom’s mom was very gentle and loving. Both were deceased long before I was born.

Despite being an immigrant family, her siblings became very successful.  One started profitable savings and loan; another owned a factory, one was a professional baseball player, and several others became engineers. I remember going to the home of one uncle.  We lived in a run-down Chicago bungalow.  His family lived in an actual mansion in Riverside—a giant house with a book-lined library and an elevator. I recall going to other relatives on my mom’s side; that were also impressive.

Cultural limitations bound her life. Women were regarded as second-class citizens.  If her brothers saw her on the street, they would ignore her as she wasn’t worth their time.  In those days, there were two types of high school certificates, a 2-year and a 4-year diploma. She graduated from the two-year program, which completed her education. She was then expected to work, which she did in a variety of menial jobs.  This was not unusual, except for one thing, my mother was one of the most intelligent people that I ever knew. I know a lot of very smart people, but her intelligence was global.  

My sister has a diary that my mom wrote that recalls her graduation.  In attendance was her family.  The principal stood at the podium and announced that an award was to be given to the most outstanding student.  The principal talked about all of the student’s academic talents and amazing creative abilities. That student was a superstar with a bright future. My mother was curious to discover which boy won the award.  Then the principal announced the name “Anne Skriba” (my mom).  Her brothers were shocked that their stupid sister wasn’t stupid after all.

Edit: My sister has my mom’s diary, which is the primary source for the above paragraph. She has offered the following corrections: My mom received specific awards for her creative activities, which ranged from writing poetry to authoring a play. The school also had an award that was given out to the best academic student in a class. Their name would be engraved on a plaque. My mother was awarded that honor and consistently scored the highest among her peers academically. When the principal gave her the academic award, they referred to all the other awards she received. Last correction, the principal identified her as Anna Skriba, not Anne Skriba.

Did my mother build a space shuttle or write a best-selling novel?  No, she married my father and raised a family.  I believe that few people who met her knew how intelligent she was; she was hampered by low self-confidence, anxiety, and the locked-in role women of the day were expected to conform to. 

I mentioned that my mother also had her flaws, and that was undoubtedly true.  However, I felt that she loved me unconditionally.  Some may say she was co-dependent.  However, she was generous to a fault and constantly worked to keep the family together.

Here are a couple of simple examples from my experiences with her.

When I was in primary school, I had a project to create a castle. This was one of those assignments where the kid was supposed to do it, but the parents completed 90% of the build.  My mom gathered junk from around the house with my sister Carol’s assistance. Some empty oatmeal containers, a broken mirror, a bit of old house paint, some cardboard boxes, etc.  In one evening, they build me a castle that could have been used as a prop on a TV set.  It was fabulous. 

My mom did typical mending jobs, but I didn’t realize how talented a seamstress she was until one Halloween.  My sister Nancy asked her to make cat costumes for her and her boyfriend for a party that evening.  My mom was not a hobbyist sewer; she sewed because she had to repair clothes.  She thought about it for a moment and reached into her bag of scrap material and found a beat-up pair of black pants.  She disassembled the pants and pulled out her sewing machine, a gadget that never worked well.  In short order, she made both of them cat costumes, complete with ears and tails.  They looked great, despite the fact that she made their costumes with only scraps and imagination. 

My mom was an excellent writer,  something my procrastinating brother, Dave, took advantage of.  Like most college students, Dave would be given 20-30 page term paper assignments at the beginning of the term. However, he didn’t start the paper until the night before it was due. That evening, he would appear with a stack of books in his hand.  Dave didn’t type and asked my mother to do this task for him. Their efforts started after dinner, usually around 6 or 7 PM.  Dave would start by describing what he wanted to say and pulled some references from the books he brought. My mom would start typing on our old Royal Upright.  This would continue through the night, and I remember waking up at 2 and 3 AM to the sound of her typing. At some point, my mother would take over the composition.  By 7 the next morning, the paper would be complete.  I’m sure that my mom deserved the first author title on these endeavors. 

My friends always wanted to eat at my house, and I couldn’t understand why, as I assumed that all moms were great cooks.  However, I learned differently.  My mother was an effortless cook who made most foods from memory.  She would bake something every single day. She did this in our crappy kitchen with a broken stove and mismatched pots and pans.  She had a Sunbeam Mixmaster from the 1950s that was so used that my father would have to change out the motor’s brushes every year or two. Her bakery was fantastic. She didn’t teach me how to cook, but I often observed her cooking.  She had such confidence in her cooking that it gave me confidence when I started to cook.  One of her favorite TV shows was “The French Chef.”  I watched so many episodes with her that I joke that Julia Child taught me how to cook.  

My mom had a broad understanding of alternative medicine at a time when such things were uncommon.  She had a strong interest in the paranormal.  She and my dad had an actual close encounter, but that is a story for another time.

She was very gifted psychologically and had an intuitive understanding of others. Friends and family sought her advice which was both compassionate and logical.

Lastly, she had genuine psychic abilities.  I’ll give you two examples.

When I was 5, my aunt and uncle generously took me with their family to Rainbow Beach, which was a large beach/park on Lake Michigan. Those were different times, and kids weren’t tightly managed. My uncle and aunt set up a blanket, and I went off into the waves with my cousin Bob and (I think) my cousin Kris. After splashing about for a bit, I looked up and couldn’t find either of them.  I was in a panic. I decided to go back to the family blanket, but it had disappeared.  My uncle had moved the blanket to a better site.  It seemed like there were a million people, but I recognized none of them.  I decided the best way to find my relatives was to break the beach into quadrants and methodically search each one.  I did this twice but to no avail.  By now, my anxiety and fear were out of control.

At home, my mother sensed something.  She told my dad, “We must go to the beach right now; something is wrong with Michael.”  My father tried to dismiss her concerns, but she was beyond insistent. In fact, she dragged along my sister, Carol. As they pulled into the parking lot, they heard an announcement on a loudspeaker, “Still missing 5-year-old Michael Kuna.”  My mother almost fainted.  Of course, my relatives were also looking for me, but we didn’t connect. I knew my strategy wasn’t working, so I devised a plan B.  I returned to the parking lot and found my uncle’s old Packard car. There I sat and started to cry. A kind man saw this, asked me what was wrong, and took me to the beach’s office.  My mother knew that I needed help from miles away.

I was 7 or 8 at the time and frequently played with Mike Z, a boy 1 year older than me but light years more street-smart. One day my mother said she was going to take me to the local theater.  This was extremely unusual; it was the only time she did this. Not only did she take me to the movies, but she also bought me ice cream afterward.  I was over the moon.  We walked back from 59th and Kedzie to our home at 55th and Francisco.  On the way home, I thank her for the wonderful adventure. She looked at me and said, “I had a strong feeling that if you stayed home today, something terrible would happen to you.”  We turned the corner to our block and saw an ambulance in front of Mike Z’s house. He had been spraying lighter fluid into an open flame that traveled up the can and exploded.  He was street-smart enough to roll himself in a blanket, but despite that, he had significant burns over most of his body and spent weeks in the hospital. He would likely have had me do the “experiment,” and I would have been the burn victim.  However, it is less likely that I would have had the common sense to roll myself in a carpet.  It is more likely that I would have been disfigured or dead.

We are all products of our genes and our environment.  We all have positives and negatives.  We all have strengths and weaknesses.  Today, I wanted to give you additional insight into my family of origin. There are two sides to every coin.

Peace

Uncategorized

On Being Fat

This is the most difficult post I have ever written, and it faced a lot of internal debate if it would ever see the light of day. Everyone has their own temperament.  Some wear their lives on their sleeves; others keep their personal feelings under a bushel basket.  I have no problem sharing my feelings, but I have issues sharing my vulnerabilities.  Others can exploit vulnerabilities, and I like to feel safe. In addition, being transparent can expose me to the judgment of others.  Frankly, I don’t like to be judged. So why am I writing this post?  Because it’s time.  If you can’t accept me for who I am, then it is best that we part ways.  If you can accept me for who I am, I will reciprocate.  I am not an Instagram kind of guy; I’m a real person. 

I have said less than flattering things about my dad and my relationship with him.  My dad was not an evil person; he was just flawed.  I’m sure he had hidden insecurities during a time when men were supposed to be invulnerable.  I’m sure that I disappointed him in many ways.  I was not a typical kid.  I always was different, odd. I was interested in how the universe was formed when I should have been interested in playing baseball. I was sensitive when I should have been tough.  I was fat when I should have been thin. I was not a 1960s poster son, the kind of kid a dad could brag on. Sorry dad.

My father met my oddness with anger.  He never hit me; his anger was expressed in harsh words and a lack of interest in me. As a child, I felt this was normal and deserved his judgment. There was truth in his statements; I was an embarrassment to him.  By the Grace of God, I was given an alternate view of myself from other adults who seemed to value me and celebrated my oddness. Their enthusiasm for me far exceeded anything that I deserved. From nuns to teachers, there was a consistent message.  I was different, but that was amazing.  I was special.  I thought outside of the box.  God had plans for me. These good people saved my life and made me realize I had value. I now know of an additional force that propelled me away from a negative concept of myself-and that was anger. It feels so odd to admit that, as I am a person who rarely feels angry.  However, certain situations can turn it on; I can move mountains when that happens.

I long ago accepted who I am.  In fact, I used my differences to my advantage.  These “negatives” became gifts that gave me a life I never could have imagined as a child.  

 However, one part of my life still gives me great shame.  So much, in fact, I sometimes have to force myself to be around people.  Long ago, I committed to never allowing my fears to control or determine my life’s trajectory, but it is work for me.

Everyone has differences, but those characteristics can be hidden in many cases. However, some differences are impossible to shield. If they are of the socially acceptable type, they are often ignored. But our society still has taboo characteristics that welcome mocking and judgment.  Unfortunately, I possess one of them.

I was average weight until about 5th grade, then something happened.  I started to gain weight.  I don’t recall any changes in my eating patterns, and I believe that, in part, it had something to do with puberty.  In short order, my weight had increased by almost 100 pounds.

You can only imagine the torrent of shaming comments that I got from my dad.  I won’t repeat them in this post because they still create hurt and sadness in me. I was disgusted with myself as I was now wearing my differences in direct view.  In grade school, I taught myself to temper excitement about my interests when interacting with others.  I could fake being “normal,” and people would accept me as such.  However, there was no deception for being fat.  It was out there for all to see.  I was wearing a giant billboard stating that I was a freak of nature.  

Beyond family, I don’t recall others criticizing me for my weight.  I have no memories of kids teasing me about it.  They seemed to accept me for who I was and even liked me.  I wasn’t one of the super popular kids.  However, I was part of the pack and even had a bit of status being the “kid who knew everything about science.”  However, in my heart, I felt like a fake who was about to be discovered.  My obesity made me a bigger target for my dad’s displeasure with me, and for once, I thought he was correct. I hated myself when I looked in the mirror. Why couldn’t I just be normal?  Why did I have to be different? I couldn’t act the part of a skinny person; my weight signaled to all that I was odd.

In 7th grade, I decided to do something about my weight, researched the topic, and started a weight loss program.  I’m not a person who does something by half measure, and I lost weight and became the family weight loss expert.  Aunts and uncles would take me aside to learn my secrets, and I enjoyed a celebrity moment. Unfortunately, over a few years, the weight came back. I tried my old techniques, but they didn’t work as well, and I had to adopt new, more stringent strategies.  I lost the weight again but regained it in a couple of years.

This cycle has repeated itself numerous times—I had to adapt and try new techniques each cycle.  I have been on multiple diets.  I have joined every major food plan, I have purchased prepared meals, I have taken over-the-counter supplements, I have used prescription meds and had medical interventions, I retained a personal trainer, and I have worked with a dietician.  

I am dedicated and reliable, and those characteristics have been utilized in my weight loss efforts.  However, my cyclic pattern continues as it is impossible for me to sustain a starvation-eating pattern infinitum. Eventually, I weaken and slowly regain.  

I thought I had finally reached a point where it was impossible to lose weight, but around 5 years ago, circumstances allowed me to lose a considerable amount of weight.  But, once again, I regained. Now, I have to deal with shame one more time.  “What will people think of me who saw me thinner and now see me fat?”  It makes me want to avoid people.  I can’t let that happen.  

As in most of my writings, I scribe this for my kids.  Not only that they know me better, but to also help them deal with any differences that they may see in themselves. I also write it for any others who may be reading this. Can you accept me for who I am instead of what I look like?  If not, OK, but let’s not pretend we must be buddies. 

In this regard, I should accept myself.  I would like to, but pounds continue to creep up unless I actively work on losing weight.  I do not know its endpoint as I have never allowed my weight to stabilize. I like to be active, and I want to be healthy, and these facts motivate me to control my poundage-however, unsuccessful I may be. 

Strangely, there are some positives to my dilemma.  I know what it is like to be judged for something that has little to do with who a person is.  Some people will see me from afar and instantly form a negative opinion of me. Their preconceived notions will become solidified to a level that I will never be able to break.  To be judged in such a superficial way is cruel and unfair, but it is a fact of life.

Those who know me know I’m committed to not judging others based on any superficial identifier or single characteristic.  Race, religion, sexual orientation, gender, or gender identification, so many people instantly reject individuals based on these criteria.  Such superficiality seems insane and unnecessary to me. Why do we need to do that?  I say this as a person who was judged for being different.  Yet, a person who has contributed to society.  A person who has never intentionally hurt another human.  A person who has value.  I am not alone.

If you have gotten this far in this post, I thank you.  I wear my differences directly on my body. I can not hide.  Accept me for who I am. If you can’t, let’s be honest and talk about it.  Get to know me. Love me, and I’ll love you right back.  I will celebrate your differences.

I didn’t have a weight problem as a young child.
After losing weight my first time around.
I met Julie after another diet.
Early grade school. Then I started to gain weight.
fear of parenting, parenting

On Being A Father

I have a confession to make; I never wanted to have children.  This statement is accurate, and I had my reasons.  Growing up, I was told that children were burdens, specifically that I was a burden. My personality was also inconsistent with parenting as I knew it.  I’m not a person who dictates by shame and insult; my personality is the exact opposite of that.  I felt that I didn’t have what it takes to parent.  No benefit and no skillset; not having kids was the logical choice.

The logic of teenage Mike does not reflect the feelings of adult Mike, so what happened?  One word, Anne, my oldest child.  Ann was a surprise in a troubled first marriage, and I was terrified.  However, something happened when I held her in my arms for the first time, my fears melted away, and I knew that I was up to the task.  I could not parent how I was parented; like so many things, I would have to figure it out for myself.  

I saw my parenting goal as singular.  It was to raise my children to become successful adults.  I love my kids absolutely and would do anything for them.  However, parenting is the job of raising children, which is much more work than being their pal.

You may be confused about what my identifier “successful” means, as the term has a specific connotation for many.  Let me define this further.

Does successful mean reaching monetary wealth?  No, wealth is fine, but money alone does not correlate with a satisfying life.  Success in this regard means having enough money to live comfortably.  In other words, to live a normal life without the constant worry of debt. 

Does successful mean obtaining a high-level job or career?  No, it is wonderful to have a job that interests you; however, a title by itself does little.  In my psychiatric practice, I treated many individuals.  The group that was the most dissatisfied with their lives were lawyers.  Many of these individuals made a great deal of money but hated their jobs and the climate they worked in.  I’m sure some lawyers love their job, and I mention the above to illustrate that title and money are not enough by themselves. 

Does success mean having a high level of skill or education?  Anyone who knows me understands that I value knowledge.  However, knowledge alone does not equate with either success or happiness.

Longitudinal studies have all indicated that individual happiness depends on connections with others.  However, the happiest individual does not have the most Facebook friends.  Each person has their own discrete need for connectedness.  Person A may need one hundred connections, while person B may need two. Of course, some individuals are happiest completely alone, but that is the topic for another post.  Most of us need some sort of healthy connection with others.  Single people can have wonderful connections, while some married individuals have terrible connections. It is all about the quality of the connection, not the type of connection.

Healthy connections can only happen through bilateral cooperation.  How many individuals expect the other connection member to meet their needs, or how many co-dependents assume all responsibility in a relationship?  

A sense of self is critical.  Self-esteem doesn’t mean that you are some sort of narcissist.  It means that you believe in your abilities and understand your limitation.  It implies that you know that you have equal worth with every other human on this planet. It means you can say no to demands you deem inappropriate.

Realistic confidence parallels self-esteem. I’m not referring to“participation award” confidence. I’m talking about the confidence achieved not only by success but also by coping with failure. Another term for realistic confidence is resiliency.

The ability to empathize is critical.  Empathy is the ability to place yourself in someone else’s shoes. It is understanding someone from their perspective rather than only your experience.

Kindness is mandatory.  Kindness is not a weakness; it is a strength.  Kindness allows you to extend yourself when it doesn’t serve your needs.  Kindness is an active process and very different from co-dependency or martyrdom.  Kind people can say yes, but they can also say no.  

Cooperation is required.  The ability to cooperate with others is needed in all relationships.  Those who have to win at any cost are isolated and alone.

Basic skill sets are also necessary to function in the adult world.  There is no job beneath any person. If a toilet needs to be cleaned, the successful person knows how to do it.

An appreciation for our role in the greater universe is necessary.  We all have a voice, but there is something greater than ourselves.

Accepting that everyone must be a steward to each other and our greater world is necessary for balance. We are not islands but intimately connected to others and our world.

The above qualities place someone on a path to a successful life.  Naturally, many other factors intrinsic to the person and external to their lives also contribute to one’s overall well-being. Personal health comes to mind.

All of this brings me to thoughts of my children and what an incredible blessing they are.  I have tried to be a good parent but can’t take full credit for their identity. My tireless wife, other adults, and my children’s friends have contributed to who they are.  Importantly, their own genetic constitutions impact them.  This last fact is beyond a parent’s control but likely as important as any other factor.

My kids are now adults, and I have witnessed them as such during this crisis time of Julie’s illness. I could give many examples, but the most immediate are those from today.  Our family has a tradition of making special days special for the honored individual.  My kids participated, but Julie or I have always orchestrated the actual process.

Today is Father’s Day, and Julie remains in the hospital.  This has been very stressful for Julie, myself, and our kids. Despite that, my Father’s Day celebration is in full swing. My kids baked homemade cinnamon rolls for me this morning and brought me breakfast in bed (a family tradition).  They asked me what I wanted for dinner and are preparing it as I write this.  

We visited Julie this afternoon, and everyone pitched in so we could take her around the beautiful Marianjoy gardens.  They knew I liked hiking, so we drove to a forest preserve for a family hike. Each of their actions required planning and execution.  Each required empathy and kindness.  Each needed cooperation and compromise. Each required a variety of skills.

At the moment, I’m staying out of their way, but I can hear their excited conversation and laughter emanating from the kitchen.  

This best Father’s Day is a present to me well beyond cinnamon rolls and cornflake chicken. My children are successful adults. They have taught me how to love. My pride in them is colossal.  My love for them is beyond limits. What more could I want?

Happy Father’s Day

A breakfast fit for a king.
Breakfast in bed.
Visiting Julie.
A hike in the woods.
A world filled with life.
Uncategorized

Do You Believe In Guardian Angels?

Have you ever had an incident where you felt that you were being protected or directed by a force beyond yourself? I have had many such events, some insignificant and others significant. Let me tell you about a few of them.

I drove to my son’s college last week to pack up about 90% of his belongings. He would graduate this week, and I knew the family would not want the hassle of packing on graduation day. The day before my packing trip, I was using my phone, and I developed a sudden fascination for the State Farm app. I had that app on my phone for years and never thought about it. Why would I be so interested in it now?

I opened the app and was immediately drawn to the section on roadside assistance. I had never used roadside assistance in the 40-plus years I had State Farm car insurance. “Hmm, I forgot I even had that,” I thought.  

Kathryn, Will, and I packed Violet the campervan to bursting. I then did a graduation photoshoot with Will in his cap and gown. Exhausted, KK and I were about to leave when I discovered that Violet had a flat tire. “Crap!” I said out loud. Violet is a big girl, and her spare is under her carriage. I had never changed a tire on her and thought I couldn’t manage it. However, my recent app awareness reminded me that I had roadside assistance. Forty-five minutes later, we were on our way back home.

When Kathryn was a freshman, I drove her and her belonging to the University of Arizona. I then drove back solo to Naperville in my tiny Honda Fit. There was a lot of road construction on my return trip, with long sections of the highway cordoned into single lanes using concrete barriers. I had heard that the state police were brutal on speeders in these areas, so I made sure that I turned on cruise control every time I was in a construction lane. 

I was in New Mexico, driving in a long, cordoned-off lane and daydreaming. Suddenly, I felt an overwhelming command. “LOOK IN YOUR REARVIEW MIRROR, NOW!” I did so and was horrified to see the giant grill of an 18-wheeler. The truck was so close to me that the driver could not see me. He wasn’t paying attention and was likely as distracted as I was. He would have overtaken the Honda in seconds, destroying it and killing me. I punched the gas pedal and slowly moved forward and away from the truck. Finally, he saw me and was clearly as freaked out by the event as I was. He stayed several miles away from me from that point on.

One more car example. As some of you know, I drove weekly to Rockford, Illinois, for many years. Part of that drive was on Interstate 39, a notoriously windy road. I was going home one Friday and was very tired. In front of me was a pickup truck pulling a camper trailer. Once again, I felt a firm command, “BACK UP, GIVE THAT TRAILER SPACE.” I slowed down and increased my interval from several car lengths to several blocks. The pickup tried to change lanes but couldn’t and jerked back into my lane. That jerk, plus the wind, sent the trailer into a wild oscillation, and within moments, it went airborne and then crashed horizontally right in my lane. I would have been crushed if I had been following at a normal distance.

These types of events go well beyond driving. Let me give you a couple of other examples.

When I was a student, many teachers would mark “on the curve.” In other words, the top grade on the test would become 100%, no matter the actual score. This was a way to compare student to student rather than using some arbitrary scoring standard. I often “broke the curve,” meaning I scored significantly higher than the other students. So my test score would become the defacto 100%. I am good at taking tests, but I have a secret weapon. Usually, when studying obscure facts (sometimes at the footnote level) would pop up, I would get the feeling, “STUDY THIS.” More often than not, that information would be prominently questioned on the test.

How about another academic example? This one you may have heard before. I didn’t have a lot of resources when I was younger. I got an full ride plus a stipend to attend graduate school and earned my Master’s in Biochemistry that way. I planned to continue to get a Ph.D. and become a university professor. However, I again had an overwhelming feeling, this time to do something crazy. “LEAVE GRADUATE SCHOOL AND APPLY TO MEDICAL SCHOOL.” This was an insane idea. I was incredibly fortunate to get a deal to attend grad school, and this feeling was telling me to throw the opportunity away.  

I attended a junior college for two years and then NIU for my undergraduate degree. I was surprised that graduate schools wanted me. Med school applicants start their preparations in high school and have the funds to attend top universities. That was not me. 

I fought the feeling thinking that it was academic suicide. This only made the urge stronger, “LEAVE GRADUATE SCHOOL. IT IS NOT FOR YOU! TRUST ME, APPLY TO MEDICAL SCHOOL” I finally gave in and left after my Master’s degree, got a research job at the University of Chicago, and applied to medical schools. I was confident that I had just thrown my life away. However, multiple schools interviewed and accepted me. I wound up attending one of the country’s top medical schools. That sort of stuff doesn’t happen to a blue-collar kid like me. 

Because I went to med school, I worked in a hospital. It was there that I met my wife. Yesterday I sat down with her and our three wonderful kids to celebrate Mother’s Day. None of that would have happened if I had continued my original path.  

OK, just one more example. As a teenager, I had a desk at the top of the second-floor stairs in our old 1920s bungalow. The space between the desk and the stairs was adequate for a chair but not generous. One day I was seated at my desk and completely engrossed, trying to figure out a physics problem set. I kept working the equations one way, then another, but I couldn’t get the answer that I knew was correct. When I am in such a place, everything around me becomes muted, and my mind transcends into a place where all outside distractions disappear. Oblivious to the world, I found myself tapping my pencil as I rolled my chair back and forth, back and forth. Suddenly, I felt “STOP!” and simultaneously experienced what felt like two hands pressing on my shoulders, freezing me and freaking me out. I jumped up, and my chair crashed down the stairs and into the hard dresser on the landing below. On my next unconscious roll, I would have tumbled down the stairs, with the crash breaking my neck or possibly even killing me. 

I could give other examples, but I hope you get the point. These events were controlled by a force outside of me. A power that would guide me, protect me, help me.

Some may say that it is just my subconscious processing data and popping up in my conscious when necessary. Others may say it is random coincidence. Still, others may note that it is the direct voice of God. Or could we have spiritual beings connected to our Higher Power that travel life with us and protect us? Some may call such an entity a guardian angel. 

I’m leaning toward the last two explanations. But, naturally, I am still determining where the truth lies. There are many forces in the world that I neither understand nor comprehend. What do you think?

DIY laundry soap

The Problem With Homemade/DIY Laundry “Detergent”

Years ago, I watched a reality TV show where the mom of a big family made her own laundry soap, I was fascinated, but the chemist in me was suspicious.  Yet, she said that her DIY product worked as well as the commercial stuff.  Since then, there have been countless variations of that same recipe, consisting of three ingredients: Super Washing Powder, Borax, and bar soap (usually Fells Naptha, Zote, or Dr. Bronners). The ratios of these three ingredients vary dramatically, with no clear winner among the recipes.  

During the pandemic, many stores in my area had empty selves beyond toilet paper. Cleaning agents like all-purpose cleaners and hygiene products like hand sanitizer and liquid hand soap became impossible to buy. Because of this, I started to create my own products with reasonable success.  The thought of making DIY laundry soap re-emerged, but again, the chemist in me rejected this idea. Recent searches of users of these concoctions confirm what my thoughts were long ago.  Because of this, I decided to do a deeper dive into the topic of homemade laundry soap.  if you are making your own laundry soap and are happy with the results, I am happy for you.  I don’t want to rain on your parade.  You do you.

Many of the current recipes are based on traditional laundry washing. I remember my mom doing laundry in the 1960s and the 1970s.  I also have some historical information on how my grandmother did laundry in the 1940s.  Their methods radically differed, reflecting how modern advances made the dreaded laundry day palatable.

In the 1940s, it was common to use traditional laundry soap.  The laundry was sorted and scrubbed with soap on a washboard until clean.  At some point, my grandmother would boil her items, likely to aid the cleaning/sanitizing process and to add blueing agents (which made whites look whiter).  During those years, people sometimes mixed in chemicals like washing soda or borax to make their tasks easier. Let’s look at these three basic cleaning agents.

Super Washing Soda (a common brand of washing soda) is the chemical sodium carbonate.  It changes the pH of the water to be more alkaline.  In addition, it binds with minerals, like calcium, in the water to soften it—high pH and softer water clean more efficiently. Sodium carbonate is still widely used in commercial laundry detergents.

Super Washing Soda is a washing soda brand commonly sold in stores.

Borax is the common name for the chemical disodium tetraborate.  It also has a high pH and makes the wash water more alkaline.  In addition, borax can react with water to create hydrogen peroxide so that borax can act as a whitening agent. Borax was added in some early commercial detergent formulations (I remember it being in a laundry detergent in the 1960s) but eventually lost favor as borax can irritate the skin.  Also, borax has toxic qualities, which can cause illness if ingested or inhaled.

Borax may have a number of home uses, but there are better alternatives for laundry days.

Laundry Bar Soap (Fells Naptha, Zote) is a harsh soap used for tasks like doing the laundry, but it can also be used for other cleanings, like dishwashing. I have read blogs where the writer claimed soap washes out of clothes easier than detergent; that is completely false. Laundry soap needs hot water to dissolve and doesn’t work well in cold water.  In addition, all soaps bind with minerals in the water to form soap scum.  This can mess up modern washing machines.  More importantly, soap scum is hard to rinse from clothing and traps oils and dirt, making clothes look dingy.  Bacteria thrive in this goop, causing them to smell bad.

You can find Fels Naptha at groceries, big-box, and hardware stores.

The above problem was less of an issue for Grandma as she was using only natural fabrics, lots of water, and labor-intensive techniques (like boiling her clothes).

I recall my mom doing laundry, first with a wringer/washer and then with an automatic machine. She would use traditional laundry soap and a washboard only for stain treatment.  This was most commonly done to remove “ring around the collar.” As an adult, I have never seen a ring around my collar.  Are we just cleaner nowadays?

Mom saw the benefits of laundry detergent, which works better in modern washing machines and with modern fabrics than traditional bar soap.  Let’s take a look at detergents.

Detergents, just like soap, are surfactants.  Surfactants have unique properties where they are both hydrophilic (water-loving) and hydrophobic (water-hating). Fats and water don’t mix well. Surfactants act as a bridge allowing water to interact with fats so that the water can wash the body oils/grime off your clothes. 

Detergents require a multistep manufacturing process using a substrate which is often petroleum-based but can be other things, like plant oils. Detergents can be manufactured with different properties, such as high foaming (suds) or low foaming.  Unlike soap, detergents don’t form soap scum and can be formulated to rise well.  Detergents can be designed to dissolve in cold water and to work more effectively in that environment. Modern detergents are biodegradable, like soap.  

You can see the advantages of detergents in many cleaning/hygiene products. Detergents are the principal cleaning agents in laundry detergent, dish and dishwasher detergent, and hygiene products such as shampoo, body wash, and liquid hand soap. Detergent formulas can be very strong or extremely mild.  If you have a skin condition like eczema, your dermatologist will likely recommend using a “soap” like Dove unscented, Aveeno, or Vanacreme.  None of these are soap; these bars are made from mild detergents.

Commercial laundry detergent products contain a lot more than detergent. In addition, they may have water-softening agents, color-fast bleaches, color-brighteners, and various ingredients to remove specific stains.  Stain removal agents may include oxidizing agents (like Oxiclean) and enzymes designed to dissolve specific stains. Detergents may also have preservatives to increase their shelf life.  Detergents can be customized for a particular region based on the type of water present. 

All of the above ingredients add to the cost of the product, which is why better-rated detergents like Tide or Persil cost more.  Bargain detergent products may omit some of the expensive additions, like stain-removing enzymes.

Tide often comes on top for stain removal abilities, but it is also one of the most expensive laundry detergents.

Eco-friendly cleaners like Dr. Bronner’s Sal Suds and Tru-Earth laundry sheets also use detergents as their main cleaning agent.  They may have a shorter list of additives (and clean less effectively).  These brands will proudly proclaim things like they are “phosphate free.”  However, all laundry detergents have been phosphate-free for decades. Laundry sheets are manufactured with a dissolvable plastic that binds the cleaning agents together. In addition, cardboard boxes/jugs are often plasticized, making them difficult to recycle or compost. Are these products better for the environment or just greenwashed to make consumers feel better?  I’ll leave that to you to decide.

Green or greenwashed?

When my kids were in grade school, we submitted a project to their school’s science fair, where we compared less expensive laundry detergents to more expensive ones. We stained white tee shirts with various things (catsup, chocolate syrup, etc.) and then washed them.  We did one wash with no detergent as a control. The more expensive Tide cleaned stains better than the cheaper brands.  However, we also discovered that water by itself lightened stains. Our observations showed that water alone was about 60% as effective as washing with Tide.  This makes sense, as water is the universal solvent. However, this can cloud a laundry soap maker’s judgment as you can toss almost anything into the washer and get a cleaner product.  However, much of that cleaning may be due to water, plus the agitating action of the machine.

This latter point also deserves mention.  Adding energy increases cleaning ability.  Washing clothes on a washboard, adding hot water, or using an agitator all add energy to cleaning reactions and generally result in a cleaner wash.  

There is logic in the formulation of homemade laundry detergents. Still, they can’t compete with modern commercial products based on the information I have provided above.  To combat the soap scum issue, many home products use very little soap, but inadequate soap means less cleaning.  Still, many reports from DIYers say that their clothes look duller, smell worse, and are less absorbent over time.  I have seen some DIY formulas that have become incredibly complex in an attempt to combat these issues.  One recipe used Super Washing Soda, Borax, Fells Naptha bars, Zote bars, powdered Gain laundry detergent, Oxyclean, and scent crystals. Gain is a detergent, and Ocyclean contains detergent, so the lady’s improvements can be traced to the detergent in those products.  

OxiClean is a product that contains a number of ingredients, including detergents.

Several videos and blogs describe how you can “strip” your clothes to eliminate all the residue and gunk from DIY soaps.  Lastly, some DIY soap users add vinegar to their rinse cycle in an attempt to wash away some of the soap scum and make their items softer. The fact that DIY laundry soaps don’t work as well as commercial laundry detergent seems to be a secret everyone knows.

The most effective DIY laundry soap recipes use detergent, often Dawn dish detergent, as their surfactant instead of laundry soap. Dish detergent is designed for suds, so you must use less in machines requiring low suds. Despite being more effective than laundry soap, these concoctions are less effective than commercial laundry detergent. It should be noted that these recipes are homemade diluted laundry detergents, not laundry soaps.

Beyond the perceived idea that DIY laundry soaps are more natural, most cite cost as the reason they mix up their batches. Remember, there is a difference between cost and value. Can you still save money if you decide to forgo DIY laundry soap?  The answer is yes.

The most expensive laundry detergents clean the widest range of stains.  That may be great if you have a bunch of toddlers who are constantly spilling on themselves.  However, many of us are adults, fairly sedentary, and neat. Our clothes may get clean using a cheaper laundry detergent with fewer ingredients. This price difference can be significant.  For instance, a 40-ounce bottle of Persil at my local grocery store sells for $8.99 and does around 25 loads at a cost of 36 cents per load.  While a 32-load bottle of LA Totally Awesome laundry detergent at Dollar Tree costs only 4 cents a load ($1.25/32 = 0.039). Naturally, there are many brands between these price points, plus buying on sale or in larger quantities can offer additional savings. 

LA Totally Awesome laundry detergent can be had for $1.25, yielding less than 4 cents per load.

The cost for most mid-level laundry detergents is about 7-13 cents a load. If you assume 10 cents a load and are a single person or couple, it is reasonable to think that you will do four or fewer loads of laundry per week.  4 loads x 52 weeks = 208 loads per year.  Two hundred eight loads times 10 cents is only $21 for a year’s worth of washing. I don’t think a DIY laundry product would cost you much less.

At the time of this writing, the 144.5 ounce of the popular Arm and Hammer laundry detergent can be bought on Amazon at a cost of 8 cents per load.

People frequently use too much detergent, which can be easy as manufacturers design confusing measuring caps.  The amount of needed detergent may be as little as 1/8th to 1/4th the volume of the measuring cap, so read the instructions on the bottle. The excessive detergent will not wash out of your clothes and give you the same problems as laundry soap.  

Can you use less detergent than recommended?  Some say yes, but most manufacturers base their recommendations on what works.  Use less, but return to the recommended amount if you are unhappy with the results.

You may ask, what is better, pods, powder, liquid, or sheets?  Pods are convenient but much more expensive.  Powders may be more eco-friendly as they don’t come in a huge plastic jug. They also may be less expensive to buy than liquids.  Newer powder formulations dissolve better in cold water but not as well as liquid detergents.  Liquid detergents dissolve well in cold water, are effective, and you can use them directly on a stain as a pretreatment, but you have to contend with their huge and eco-unfriendly jugs. Detergent sheets use less packaging but may not be as eco-friendly as their advertising would want you to believe. I have read reports from several consumers who felt that sheets did not work as well as more traditional agents. It can all be a bit confusing. 

For occasional stains, a simple pretreatment may do the job. American’s Test Kitchen found that soaking overnight with Oxyclean was better at removing stains than spray stain removers. There are also enzymatic soaks that you can purchase; the product Biz comes to mind. Soaking overnight works better than adding these same agents to the wash load.

Spray-type stain cleaners are very convenient but may not work as well as soaking-type stain removers.
Biz is a complex stain remover.

Sometimes you have to bite the bullet and go with the top brands.  If you or your spouse is an auto mechanic, it may be worth spending the extra money. Most would wash greasy uniforms separately, so you could still use a less expensive brand for the rest of your laundry loads. I knew someone who worked a very dirty/greasy job and bought a used second washer for his work clothes.  I also read a post about a family using an old ringer/washer for such items.  They could use lots of very hot water and long agitator times to dissolve away the grime without contaminating their fancy newer machine.

Godspeed if you are happy with your DIY laundry soap.  However, if you aren’t happy or don’t want to be your own chemist, try some of my suggestions.

Peace

Doing laundry in an apartment, Portable washer and dryer, Uncategorized

Living In A Small Space? You Can Still Do Laundry!

When I was searching for a house, I looked for specific features.  However, only after I moved in did I realize that one of the best additions was something I hadn’t even given much thought to.  What was that?  Having my own washer and dryer.  

I had lived in several apartments before buying a home and accepted the hassle of laundry day.  However, once I was freed from dealing with coin-operated machines, I realized how stressful doing laundry had been.  What were the points of my pain?

  1. The quarter hunt.  I was always looking around for quarters, and it always seemed I was one or two shy. Searching under my couch cushions became a regular part of my week. 
  2. I lived in apartments with only a single washer and dryer and others with a bank of them. With the single-machine apartments, it was common to go down and find the machine in use with several loads cued up. Once, I walked into the laundry room of a complex with a bank of machines, and someone had taken someone else’s clean wet laundry and thrown it on the dirty floor.  I’m not sure why, but that was creepy.
  3. Machines would be broken, and dryers wouldn’t heat, etc. 
  4. Who knew what was washed in a machine right before I used it?
  5. Although most of my apartments had laundry rooms, I occasionally used laundromats. This meant waiting in a too-hot, too-cold, and always-humid room for hours.  Laundromats never seemed to have chairs; when they did, they were usually those fiberglass molded ones that would often have a broken leg.

After decades of ownership, I take having my own laundry facilities for granted.  However, the pandemic brought a new level of awareness to this basic need. Millions of people live in apartments that don’t have in-apartment laundry.  What did they do? I researched the topic and found that laundry day was stressful for many of them.  I read reports of people doing all their laundry by hand to avoid public laundry facilities during the pandemic. What a massive hassle.  That got me thinking about the overall stress of using public laundry facilities, which led me to research alternative options. I was surprised that there were quite a few possibilities, some very reasonable.  I want to share that information with you. Hopefully, this post will reach a few apartment dwellers who may find it useful.

Washing clothes by hand works for a few items, but it can be a real drag for larger loads.

Manual washing

As old as time, the simplest way to get your clothes clean.  When I was a student, there were rare times when my schedule was so out-of-control that I needed to wash necessary items in the sink. It is possible to get a decent result, but such actions get tiring when doing anything more than a few pairs of socks and some underwear.  Some manual gadgets can lighten this load, but only by a bit.  I’ll list them in the photos below.

A simple scrubbing board adds friction and, with it, increased cleaning power.
This Scrubba makes hand washing small loads more efficient.
Another popular manual gadget is the Wonder Wash.
This washing plunger is used in conjunction with a large tub to effectively wash clothes. Some people use a clean toilet pluger for the same task.

Twin-tub machines

Sometimes called Asian washers, these machines are very lightweight and come in various sizes and capacities, from desktops to floor-standing machines.  They tend to be inexpensive, and they look like toys.  However, users of them say they are surprisingly good at washing clothes.  Further, I read several “one year later” reports that were quite favorable.  The larger capacity versions of these machines cost more.  Some drain only by gravity, so you must place them on the counter next to a sink or in a bathtub.  Others have an electric pump to discharge the water.  These can be placed on the floor next to a sink.  

Twin-tub machines are manual, but they eliminate the hand-wrenching jobs of physically washing, rinsing and wringing out wet clothes.  Their washing action is very strong, to the point of often knotting up clothes, and their separate spin dryers are so fast that clothes often dry within hours once hung up.  These machines are designed for cold water washes but can be used with warm water.  Hot water will damage them.

You need to fill these machines manually (using a hose connected to a faucet) and manually switch them to drain.  In addition, you need to place the wet clothes into the spinner basket and then return them for a rinse and then another spin.  The spinner baskets are smaller than the washer, so you must spin a wash batch in several loads.  However, spinning only takes a few minutes. Even the larger machines of this group have less capacity than a regular washer.  However, overall, people sing their praises often using statements like “Life changing” and “The best purchase I ever made.”  

As an aside, various users have their own techniques when using these machines.  Some spin and then rinse, others rinse and then spin.  Some fill the washer using a faucet connection and a little hose; others fill from a bucket.  Manual, in this case, means very flexible operations.

This is not a twin-tub machine, but it does provide automatic aggitation for small batches of clothes.
This small twin-tub may be all that you need if your needs are modest.
This larger machine is floor standing. It does not have a drain pump so you will likely need to place it in your bathtub or shower stall when operating.
This is a similarly sized machine from the same manufacturer, however for about $30 more it has a drain pump.

The Laundry-Alternative  Niagara washer, plus the Laundry-Alternative Nija spin dryer.

This one-of-a-kind setup offers almost full-size laundry capabilities in a much smaller and less expensive package.  These machines are more automatic than twin-tub machines, but they still require some work from the operator.  They are bulkier, with the Niagara washer weighing 35 pounds and the Nija spin dryer weighing almost 20 pounds.  However, they are built to last.  I saw one report of a man using a Laundry-Alternative spinner 15 years after he bought it.  

Although top loading, the Niagara operates more like a front loader.  Therefore, it is gentler and uses less water than a top-loading machine.  It fills and runs automatically, using a very simple mechanical dial. It has a drain pump so you can place it on the floor next to your sink. The Niagara can be used with hot water if desired.  It has dispensers for soap and rinse additives like fabric softeners. 

The Niagara will complete washing and rinsing independently, but it doesn’t spin dry.  Buying a separate spin dryer like the Ninja is important to make this system work efficiently. 

The Ninja spinner is larger than those on twin tub machines. It is reported to be the largest capacity spinner on the market and can handle 22 pounds of clothes.  In addition, the Nija spins at an incredible 3200 rpm, compared to a standard washing machine that spins at around 1200 rpm. Faster spinning means greater water extraction. Some synthetic clothing items could be dry after hanging in less than 30 minutes. 

The Niagara washer
The Ninja spin dryer
Watch my YouTube video on the Niagara washing machine and the Ninja spin-dryer.

Fully automatic portable washers.

These units are similar to a regular washer but smaller. A typical home top-loading washing machine’s capacity is between 3.5 and 5 cubic feet, with front loaders having a 4.2-4.5 cubic feet capacity. In contrast, these machines start at 0.9 cubic feet, with many around 1.7 cubic feet capacity.  I did find one portable washer at 2.4 cubic feet. Because of their complexity, they cost more and are heavier. Some of the larger models are more expensive than basic full-sized machines. I found the most reviews for the 0.9 cubic feet machines suggesting that these are the most popular. Some of these machines are for cold water wash only.

These machines are computerized, which is nice, but this also serves as a point of failure. Because these machines are all-in-one, they spin slower than those listed above. Many of these machines spin at 750 RPM compared to around 1200 RPM for a standard washer or 3500 RPM for the Ninja. Therefore, many people who buy these machines often buy little portable dryers instead of hanging their laundry. 

This mini-washing machine operates very similarly to a full-sized one.

Who are portable machines for?

Any of these machines is perfect for a single person or a couple.  Families can use them, but they are likely best utilized when a small load must be done between a full laundry day. However, I read reports of families using these machines for weekly laundry. The best strategy for these families would be to do their laundry multiple times a week in small batches. 

Using a laundry trolley

You can buy inexpensive laundry trolleys to move around those machines that are too heavy to lift from storage to the sink.  

Which type of washer is best?

That is a personal choice.  Many people buy twin-tub machines as they are lightweight and inexpensive.  However, they are the most manual of gadgets—some like the convenience of a fully automated machine.

Personally, I like the Laundry Alternative solution.  Their machines are durable and have simple controls, making them less likely to break down.  The Niagara’s top-loading/front-operating style is water efficient and can wash a surprisingly large load despite being around 1/3rd the size of a standard washer.  The Niagara automatically does most of the tedious work of washing.  You don’t have to return to refill, rinse, etc.  Spinning is the only manual operation, but the Nija spinner is large, fast, and super efficient.  I would say that the Niagra/Nija combination is close in convenience to using a regular washing machine.

Thoughts on hanging clothes

None of these machines dry your clothes, but spinning them gets out most of the water, making drying fast.  

The fully automatic washers spin slower, so expect clothing to take longer to dry after hanging.  There is also the chance of some water drippage when using these machines. 

The twin-tub and Niagra spinners are very fast, with most clothing nearly dry.  Therefore, it is practical to hang those close out to dry. I imagine the audience for these machines won’t have outdoor spaces, and they will hang their clothes in their apartments.

There are many creative ways to hang clothes on existing home objects.  However, investing in dedicated hanging systems is best if you have a lot of laundry. 

A classic laundry rack
Another rack style.
Yet, another portable hanging solution.
This retracting clothes line can work inside your apartment and can tuck away when not in use.

Different racks and gadgets make hanging clothes a fairly easy operation.  See the photos above for some common ones.

Another way to hang clothes indoors is to use a heated airer, a clothing rack enclosed in a little tent with a small electric heater on the bottom. These units are inexpensive and have greater capacity than a standard dryer while using less energy than a standard dryer.  However, they are slower to dry than a dryer. 

Lastly, you can purchase mini-clothes dryers that operate similarly to a regularly sized unit.  Here it is recommended that you vent your exhaust out a window less you put too much humidity into your living space.  However, I have seen a number of reports where people vent directly into their apartments.  If you do the latter, I might suggest that you do so in a large and well-ventilated room to avoid eventual mold issues.  

A tiny mini-clothes dryer.

Random thoughts and my philosophy of life.