A Project Manager’s Game Plan for Dealing with Incurable Cancer
The Introduction to this multi-segment blog/e-book can be found at:
Segment One – What’s a Project? And Does Cancer Fit the Mold?
A project is an undertaking designed to achieve a specific goal, using inter-related resources within a specified timeline. So can cancer treatment truly be a project?
We’ll look at specific goals later, but, quite frankly, I wouldn’t put the end of life down as a “goal.” I have more oncologists than most people dream of in a lifetime, so the inter-related resources is clearly in hand. As for the timeline? The Almighty alone has a clue on that one. So does cancer treatment qualify as a project? Despite the shortcomings, I would argue the answer is “yes.”
The first time I took a course in project management was with Dr. J. Davidson Frame. I can still hear his voice starting the class with a phrase I later learned he used all the time.
All projects arise in response to needs.
I definitely have needs. Shortly after I was diagnosed, I realized I had needs on top of needs. And they weren’t all the needs that I would have expected. I needed affirmation that my life mattered. I needed to have a day go by without feeling sick to my stomach. I needed to be able to keep my eyes open for more than an hour at a stretch. I definitely had needs. Early on in the project, I realized the value of acknowledging the needs, in that some were quickly met, and others may never be met.
The Met Needs
- A calmer stomach
- A couple of hours of stamina
One of the first needs to be met (to overflowing) was my need for affirmation. When you realize that the clicks on the clock of life are numbered, you wonder if you really had any impact on anyone outside of your immediate family. Thanks to my wife, my sister and my church, the outpouring began. I started getting “get well” cards. Not one or two. Dozens. And many had extensive notes about our relationships and how they hoped for a quick recovery. With each card, a need was met. The beauty of the cards and the e-mails was that I could absorb them at my slower pace. I could go back and review them. I could marvel at the beauty of the butterflies on the first page and the sentiment on the inside. What had sometimes seemed so trite was suddenly impactful.
The single most important force in all of this? My wife, Nancy. As I grew fatigued, she gave me strength. She kept a brave face throughout the experience. How people engage with the entire medical community and the cancer experience without a significant other, I’ll never know. She was my counselor and advocate. She sent me to bed for naps. She asked the health care providers all the right questions. And she was queen of the record-keepers, making sure I made the next appointment for lab work, kept my appointment with oncologists, radiologists, endocrinologists and every other -ologist you can imagine. When an insurance bill came through with a wrong amount, Nancy the CPA kicked in, and got it squared away. If you don’t have a significant other, you’ll be needing a caretaker, scheduler, accountant and best friend in their stead.
And friends came out of the woodwork. A college co-worker, Doug Duckett, volunteered to be at my side (virtually or physically), from his Cincinnati home. High school friends offered support and condolences. Everyone from my best man, Jeff, to our church family offered whatever they could to make the experience better.
Lesson Learned: If you are the patient and someone wants to talk to you to make you feel better, preface the conversation with your boundaries. “I am so glad you called. Just so you know…up front…I can only be on the phone for about 8 or 9 minutes before I dissolve. But I am thrilled that you called.” If you don’t set the stage for the timing, their call goes from being a blessing to a curse. You control the clock.
The true depth of your circle of friends will shine through. Facebook and LinkedIn messaging become bulwarks in letting people find you. (For me, it didn’t hurt that my name was also my website…carlpritchard.com).
With at least some of my emotional needs met, the other needs that were addressed early were symptomatic—fatigue and nausea. The nausea part had taken its toll, driving my weight down to 138 pounds. That’s where weight loss is no longer fun. It’s dangerous and concerning. And the fatigue aspect was integral to that. There was no day when I could feel that I could work on my favorite project at the time—my dry-stack rock wall.
My favorite entertainment became the TV, where I would watch any one of my favorite DVD’s over and over again. (If you don’t have these in your collection, BTW, you should: Ben-Hur, Star Wars: A New Hope, GalaxyQuest, DieHard4-Live Free or Die Hard, V for Vendetta, Planet of the Apes (1968), The Day the Earth Stood Still (1951), The Ten Commandments (1956)).
The nice thing about a video collection is that you can hit “pause.” I did that a lot.
In a while, we’ll talk about partners in the cancer journey, but let me just briefly insert that if I didn’t have decent insurance at this point, my stomach would still be railing. Why? One of my oncologists prescribed Ondansetron. It’s a wonder drug at settling the most unruly of stomachs. At full retail, however, without generic, it’s $122/day. A day. Let that sink in. You want to feel decent for a week? That’s $854. A month? Over $3400.
Lesson Learned: If your insurance is still making you pay too much for a drug, check out GoodRX. They cut my 20-tablet prescription (6 days) from $109 (out of pocket) to $11. It’s a free co-op of folks who are looking out for the best available costs.
With Ondansetron, I was able to cope with the day-to-day of eating, and my weight loss stopped. It’s funny how you learn to love the phrase…You should eat more! While I wasn’t hungrier, I at least didn’t have to worry about dropping any more weight.
Nausea control, fatigue control, and affirmation. Those were my met needs.
The Unmet Needs
Having written three books on Risk Management, I have a pretty clear understanding of the nature of the unknown. Virtually all of my unmet needs hinged around the unknown. Since I didn’t know which treatments were effective and which weren’t, it was difficult to make informed decisions.
Even with support from my wife and friends, I rapidly learned that knowledge is power. I learned it in the most painful of ways.
Initially, I was referred to a doctor I shall refer to as Dr. F (not his real initial, but somehow fitting), as I don’t see that disparaging him helps anyone. Dr. F proved to be the most unfeeling, uncaring oncologist ever put on planet Earth. He had a pioneering treatment at the University of Maryland. I asked the following questions in hopes of understanding how my unmet needs were being met:
- Will this make me feel better?
- Will this stop the cancer?
- Will this hurt?
I was told that there would be some “minor discomfort” from the treatment, and it was unclear as to whether or not it would actually make me feel better or hinder the growth of my cancer. His words chilled me to the bone:
I really don’t care about how you feel. I care if the tumors shrink.
Wow. That made me less comfortable about the treatment than I was before I had the consultation. I sought comfort from him, and he gave me none.
The vibe he provided was right on target. The procedure hurt. A lot. And when I asked if we could take a breather mid-procedure, I was told that it wasn’t possible. I was also told they could do nothing for my discomfort, but it shouldn’t be hurting that much.
Follow that little lesson in misery with an 18-hour wait in the hospital to see anyone, and the situation wasn’t getting any better. If there was a moment in the entire journey when I seriously thought I was in my last days, this was it.
When Nancy finally drove me home, I swore we’d never see Dr. F again, no matter how highly he was recommended. She concurred (as she had to tolerate my whining and the complete lack of any sense of progress).
Lesson Learned: If you have questions and know the answers you need and want, trust yourself. When Dr. F answered all of my questions in a way I considered wrong, I should have sought out someone else without hesitation. Instead, I relied on the insights of others, rather than my own personal and professional instincts. In retrospect, it was a bad move, and the one major mis-step of the entire journey. I haven’t seen Dr. F since. And THAT has been a blessing.
From that moment forward, however, things started looking up.
In the next segment, we’ll look at project objectives (short- and long-term) and the environment you need to create around you (with the help of your own Nancy).