Own Your Time: or What I learned from Hodgkin’s Lymphoma

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There were times when things seemed to sail along, from strength to strength and from triumph to triumph.

During these periods you can do no wrong.

Other times things go sideways and in spite of your best efforts they can stay that way, testing your mettle with one difficult life exam followed by another.

This is about one of those exams.

A little over a year ago I was on a plane to Toronto and in an attempt to release some painful muscle tension, I discovered an unusual growth near my collar bone. No pain, just one of those things you know is not supposed to be there.

When I got home, my normally easy going doctor was showing an unusual level of concern, and I was sent off for a minor surgery a month later to remove what turned out to be an offending lymph node. There are many reasons for this type of growth, but my doctor knew from prior experience that this type of thing is often a problem.

My surgery was on Halloween last year. 12 days later I had my verdict: Hodgkin’s Lymphoma.

I can assure you that no one prepares themselves for this type of thing, because you can’t. There is no simple explanation for how and why this happens, nor are there ways to describe how you might feel about it.

When your doctor tells you that you have a fight on your hands…that this situation is highly treatable….that there are no guarantees….and that his first patient 30 years ago had the same thing and is doing great…. It is at a moment like this that time seems to stand still.

Lesson 1: The words cancer and chemotherapy generate extreme emotions in many people

If you say you have lymphoma people are open and inquisitive. If you say you have cancer you are considered to have a death sentence and people feel a deep well of fear. Deep down they wonder if they are next. The skillful delivery of my diagnosis thankfully did not include either word.

After 24 hours of feeling sorry for myself I decided that I’m not a victim. Shit happens, but the difference is that I can get treated over a short span of time and move on.

Not everyone is this fortunate.

Not that guy I saw on TV who is supported by the Wounded Warriors program. His physical ailments are for life, and yet he soldiers on. Bravely. To inspire people like me.

Not the woman I knew in university stricken with rheumatoid arthritis at the grand old age of 19.
…and many others who suffer daily with pain and disease.

It is at these moments that the value of your time is perversely, most obvious.

Lesson 2: Your mental approach is a great deal more important than you realize

How you frame your circumstances is everything and will shape its outcome. If you choose not to be a victim you can take an active approach to your situation. Attitude is the foundation. Seeing things through the lens of exploration and experience: How will this feel? What will this be like? This reduces the amount of emotional commitment to the situation. It dispels fear and reduces anxiety. It makes the situation bearable.

Own the moment. Go for the win. Show ‘em how it can be done.

The weeks that followed included a meeting with the top lymphoma oncologist at the agency and his student doctor, an fdg PET scan, a contrast CT scan, a blood test which was followed by a conference where all of the practitioners involved decide what your treatment protocol will be based on all of the evidence gathered.

Finally you have a meeting with the oncologist where he tells you your stage, type and the course of action. This took place a few days before Christmas. Of course it didn’t help that I had been exposed to TB a couple of years earlier by one of my work colleagues and now I had to address that particular situation at the same time.

Latent TB treatment is 270 days worth of antibiotics where the big concern, although rare, is: liver failure. You can imagine how hard I tried to avoid having to take these, but alas I had to acquiesce.

Lesson 3: If you have a fever, DO NOT go to work

……sometimes shit goes sideways, and stays that way.

Fortunately the cancer agency where I live is a world leader in Lymphoma research, and although I had a relatively rare form of Hodgkin’s, my situation was both highly treatable and likely curable.

Preceding my treatment I had the opportunity to explore the areas that I would have some control over. These included fitness, diet and fortitude. When you are heading in for this type of treatment you realize that there are a number of things beyond your purview so it’s important to identify those within your control.

Lesson 4: The inclination is to learn everything you can about your setback, but this type of situation can make that extremely overwhelming

Much of the information provided is directed to the most common types of cancer and may not apply. Further, knowing more at the beginning can increase the level of anxiety. Figure out what you can work on and educate yourself as you move along. That way you can absorb the information in small doses, like the treatment, so that you can manage the psychological pressure and uncertainty.

Late January I began chemotherapy treatments. The protocol calls for a total of 5 drugs intravenously in a session along with some other pills to manage nausea and inflammation. The cocktail is known as ABVD which was developed in Italy in the 70’s and rapidly improved the long term outcome for patients, particularly by reducing long term side effects of treatment. ABVD is administered intravenously with hydrocortisone over 2 ½ to 3 ½ hours depending on how well you can tolerate the final drug called Decarbazine.

I was told repeatedly that ABVD was one of the toughest protocols they administer. Many patients quickly find themselves exhausted and incapable of even the most basic tasks. Compared to invasive surgery and many months of follow up drugs, or the alternative: being eased into “early retirement”, I rightly considered this a "cakewalk".

All in, each treatment day required the ingestion of 9 different drugs for one thing or the other.

In any given session you might be alone in the room or with up to 3 other patients and their respective supporters. Young adults on up, and many different circumstances. It’s a weird thing to share a deeply personal and vulnerable moment with these people.

Lesson 5: If you want to know who the right person to marry is consider how they might handle a situation like this

Who will be with you when you are down? When you look like shit? Face an uncertain future? Can you ask them to sit in a room and witness this moment of vulnerability? Thankfully I married well; and without her, this would have been a great deal more difficult than it already was.

When I finished the first treatment I felt like I was wearing a lead shirt, and in the days that followed I got better and was almost back to normal before my next treatment: every two weeks. Rinse repeat.

You recover enough to get the next treatment but each round knocks you down a bit more. Your recovery is a little shallower each time.

Your life revolves around side effects and their management. Getting exercise to turn the body back on. Eating well.

The day before the new cycle you meet with the oncologist and the members of his team, usually a doctor in training. When asked how I was doing I would regale them with tales of the weight room, rowing ergometer and the ski hill.

The head oncologist smiled at the first such appointment when he entered the room and said he heard they had slowed down my skiing. He knew what I am like. I saw a gaping jaw and some raised eyebrows amongst the others. I would assure them that while my capacity was diminished, I had no intention of stopping unless I couldn’t do it.

I may have been down, but there was no fucking way I was going to be out.

Lesson 6: Exercise is far more important than you realize

The body seems to shut off after a treatment and it is all too easy to lay around due to exhaustion and the perception of incapacity. Exercise turns on the body and gets the process of nutrient and waste movement going. Repair and rejuvenation follow. A combination of strength training and some type of aerobic work is optimal. Even basic walking is highly beneficial. It’s important to remember that you will need something to work with when your treatment is done. Exercise provides you with that something.

After 2 months or cycles, which was a total of four treatments or rounds, I was sent for another PET scan. A negative or clear scan sends you back for 2 more cycles of treatment known as the insurance policy; and a positive scan means your treatment protocol is adjusted and you head to radiation.

Fortunately mine was clear.

Lesson 7: Treatment and response are explained in statistics; but you can’t emotionally invest in one outcome or the other

If it’s clear (the 75% outcome) you still have 4 more to go. If it isn’t you move on to the unknown. Either way your team is going for the cure so roll with it. When the student doctor seemed perplexed by my lack of outward enthusiasm with the PET result, she didn’t realize what I knew: the next four would be tough and I had to keep my eye on the ball to get through it.

Overall I was told I responded extremely well to the treatment. The side effects did not become onerous until the final month. It was then that I had to stop driving due to growing light sensitivity. Blistering on my hands. Hair loss although extensive wasn’t noticeable until then. No one really knows you are sick until the eyelashes and eyebrows disappear. Weakness increased and my blood numbers continued to fade from excellent to low normal; the white blood cells had been decimated at the beginning. I wondered after the 7th treatment if I could even do another one.

Lesson 8: The last month showed the biggest decline in appearance and feeling of being ok

The hardest part is the reaction of others. Their fear. Their pity and sorrow. Their reaction is worse than the experience itself. I wasn’t dead, just getting a reset. I made myself scarce during this period to preserve my psychological strength.

At the end of April as treatment was completed my focus had already turned to recovery. I spent the time I had on the mountain bike and walking as much as possible. During treatment I went from a very fit individual to one that could manage maybe 20 minutes of activity once a day if that, but not consecutive days.

As the weeks progressed fitness returned and the ability to live a normal existence increased.

The hair came back. With the sun, the blisters disappeared and the body became stronger. With the body permitted to recover for more than two weeks I felt like I was going from strength to strength.

I had my first complete hard-core MTB ride at the end of August. I was 2 months ahead of schedule. With a few minutes slower on the 1800 ft climb I crushed the descent having one of my best rides in years. Although the drive home was a challenge having used up the majority of my energy on the ride. The hard work had so far paid off, but I still had a ways to go.

Think that you can, then make it so.

This ordeal from start to finish has taken roughly a year and during that time I have had: 13 visits with a doctor. 11 blood tests. 2 fdg PET scans. 2 Contrast CT scans. 1 minor surgery. 8 chemotherapy treatments and 9 months of antibiotics.

After all that: Still standing.

There are a number of other takeaways from the experience.

Here are some additional thoughts:

• You never know what’s coming, and even if you do there is often little you can do about it. But what counts is how you manage yourself, how you approach the situation. Keep going.
• Cancer is a broad term that is defined by the abnormal growth of a cell or group of cells. The failure of a cell group to die. A malfunction. Therefore treating cancer is less about a fight in the sense of an external threat, but rather corrective action to address a physical maladaptation. Beyond the difficult process of addressing the disease physically, the challenge is within. To get through it. To overcome fear and trepidation. You must be willing to struggle and learn.
• If you discover a potential problem, don’t wait to get it checked. Taking too much time hampers your ability to be treated and recover. Denial is not an acceptable approach.
• Fitness is important, and it is difficult to find adequate information specifically related to this type of situation. You don’t need to run a marathon, but rather a brisk walk represents the most under appreciated form of active rest a person can do.
• It is never too soon or too late to make changes in your life. As a work in progress I continue to make adjustments.
• I never felt sick or thought I was ill in any way prior to this discovery. I only felt ill and weak while receiving treatment. Herein lies the paradox of treatment.
• Chemotherapy is often referred to as "poison", which does a disservice to people approaching treatment. Virtually any drug is poisonous if taken at a given dosage.
• There are a couple of hundred types of cancer and 50 or more chemotherapy cocktails. As such, the words: cancer and chemotherapy are meaningless without appropriate context.
• The way you react and behave towards someone with a serious affliction can have a big impact. They need your strength, not your fear and pity.
• While the pursuit of wealth is necessary, exhilarating and to some extent exciting, all the money in the world isn’t going to buy you the attitude, strength and time you will need in a situation like this. Dig deep, the rich well of strength you need to get through is within you.
• Support is extremely comforting during the darkest hours. Asking for help, and the surprising amount that can become available provides a candle during a dark journey.
• A person’s life is defined by what they value. Choose wisely.

I have come to the conclusion that one must endeavor to own their time. The freedom to do what you wish unencumbered where possible and the freedom to choose your encumbrances. In the depths of despair a person is reminded that the human condition is one of frailty, punctuated by moments where you can do no wrong. Hold tightly to that which reminds you of better times.

Some courageously toil in silence, struggle daily with pain and ailments. Keep going. Don’t give up. In the depths of despair, dig deep. You can do it. Your effort and courage do not go unnoticed or unappreciated. Own your time. That precious commodity that few really understand or appreciate until a setback starts the timer in the graphic form of a disease.

Live a little better, a little stronger, a little freer. Hold on for the better day ahead. It’s out there. I’ve seen it.