News about a cancer diagnosis can be overwhelming. Each of our patient bloggers and family members has received this news, and our two doctor bloggers have delivered it. It may surprise you to read how many different reactions people have to getting the news – and how many ways they’ve learned to cope.
Role: Friend and Family Member
I have to admit — it seems weird to be writing this blog. Let me be clear. I don't have, never have had and REALLY hope to never have cancer. I can’t imagine the feeling of the diagnosis for myself and the depth of the soul-numbing fear. But I can write about the effect of a diagnosis — the effect on a non-cancer-survivor. It is a little daunting to be included in this blog, and I have an overwhelming desire to be respectful beyond a fault to the real survivors — the fighters, the “patients.” Boy, I would hate to be one of you. But like I said, I can speak to the diagnosis as a friend, a sister, a daughter, a cousin and an aunt and am sorry to say I have been in each of those roles. And each case was different. It is like when someone says they grew up next to neighbors with 12 kids and no twins. Singletons. “My” cancer story is about singletons. Too many.
I am not sure I have a prescribed reaction and as I continue to experience the people in my life being diagnosed, I continue to fine-tune the reaction — it is no longer shock, I mean everyone has a story; it is no longer quite as scary, as many have survived; it is not as overwhelming — there is only so much you can do. I am not sure how it happened, but I have become the resident expert, strange for someone without the disease — but if you’re interested I am also happy to give parenting and marriage advice, and yes I am single and have no children.
So what do I know? My first real cancer experience was 20 years ago. My sister, at 28, six months pregnant with her first child, was diagnosed with Hodgkin’s disease. You never forget that moment — I still remember the doctor coming into the recovery room to tell us, and as he touched my sister’s leg, in what was supposed to be a reassuring gesture, while at the same time subtly implying the idea that we consider ending the pregnancy — not overtly, not even suggesting, just a toe in the water to gauge the option. I remember thinking -- NO Way. NO Way; this is not happening; NO Way I am losing my only sister (and being stuck with three brothers!); NO Way they are stopping my first niece or nephew from joining us; NO Way she is having chemotherapy while pregnant; NO Way I can take this on, just NO Way.
But you do. You just do. You get ready for battle, you hunker down. The idea of a reaction is silly. There is not one, there are a million.
Since then there have been many, too many. My sister, Maggy, was the first, but then followed our dear friend Ginny, who lost her battle. I can’t imagine we won’t write of her again -- she was an inspiration. My friend Catherine, still battling five years later and my Mom, three months clean. As if cancer is dirty. And this blog, my contribution anyway, will, I hope, help. In some small way. Or maybe a big way. Who knows. Just do.
Diagnosis: Colorectal Cancer
You know that old saying, "Your life can change in an instant"? Well, I am proof of that. I started my day at the firehouse on Aug. 31, 2012, as I had done so many times before in my 15-year career. Paperwork, training, taking runs, joking with the guys. But when I jumped off the rig at 8 p.m. and started having excruciating abdominal pain I thought it was food poisoning. Never in a million years would I have thought a trip to the ER would reveal a diagnosis of cancer. After all, I had spent the summer training to run my first Tough Mudder obstacle race. I felt like my world had just come to a screeching halt.
I was admitted to Froedtert for further testing. After a lot of consults, lab work, scans and everything else you could think of, I was diagnosed with stage IV colon cancer. How could this possibly happen? I was 42, in great shape, married, the mother of three kids (6, 9 and 12), had a regular physical the prior December, had no family history of it and had absolutely no signs or symptoms associated with it. On top of dealing with this terrible diagnosis, no doctor that came in and examined me wanted to take my case. They all said it had spread too much, that I was end-stage and that we should start looking at hospices. We were devastated.
Then Dr. Kiran Turaga heard about my case and agreed to take me on. He sent me to Dr. James Thomas for chemo. Chemo was my only option at the time because the cancer went from the outside of my colon, to a mass on my right ovary, to numerous spots in my liver, to my abdominal wall lining and I had free floating cancerous fluid in my abdomen. I was considered inoperable. After meeting me, Dr. Thomas decided I could take a more aggressive form of chemo. This chemo was no joke. I was sick as a dog and had terrible complications. But my scan two months later showed it was all worth it. My cancer had all but disappeared, and I was now eligible for surgery. I continued with chemo after surgery and had a hepatic artery infusion pump placed and continued to do well.
Now, I wish I could say I have remained in remission, but the cancer has showed back up a couple times. I remain on biweekly chemo. But 2 1/2 years later I still feel great. I still live a relatively normal life. I swear, if I had a dollar for every time someone said, "There is no way you have cancer, you look so good," I could take the family on a trip to Hawaii! Cancer may have temporarily brought my life to a screeching halt, but I have reclaimed it. The only thing I have not been able to do is go back to work. The unpredictability of cancer and the treatments I still get have made that impossible. I am still able to exercise, be active in my family and I owe it all to Dr. Turaga, the one who gave me a chance.
Diagnosis: Stomach Cancer
When I received the diagnosis of stomach and other cancers that were in my physical body, I was scared but I had a real peace within myself that I can't describe. I did not blame anyone or pity myself but accepted the reality. I have a positive attitude on this physical life, and I enjoy every day. And I am confident that the medical team did their very best in my physical care.
That doesn’t mean that my cancer was minor. After developing pain during a trip to Mississippi in the summer of 2014, what I thought was just food poisoning turned out to be first a kidney stone, and then cancer that involved my stomach, my pancreas, my liver and one lung.
Coping with the diagnosis of cancer was peaceful for me, but I felt bad or sad for my wife and my two sons who I love very much. Being a Christian I have an understanding of death. The physical death is something every person is going to experience, some sooner and some later -- but every one will. Even Jesus wept at the physical death of Lazarus (John 11:35).
To those who have a fear of death: Get in touch with a Bible-believing Christian or clergy member who is comfortable talking about the difference between a physical death and eternal life that is in the Bible. For instance, read Matthew 10:28, John 5:24, Luke 23:43.
Diagnosis: Mantle-Cell Lymphoma
So the question is asked: How do you react to a cancer diagnosis. Based on my conversations with many other cancer patients, this reaction is fairly common: What!? Me!? Oh my God!!! My reaction had a few extra question marks and a lot more exclamation points, because I never saw it coming. Seriously, my journey with cancer all started with a sinus infection and no signs or thoughts of cancer.
In May 2005 I went to see my primary care physician because I had a runny nose and a fever, and just felt lousy. He did a quick examination and quickly diagnosed I had a sinus infection. He also noticed a lymph node on the right side of my neck was enlarged, but he attributed that to the infection. He prescribed some antibiotics, and within a few days, the infection went away.
Now jump forward to September 2005. I’m back in my doctor’s office for my annual physical. I was feeling good, my weight was on target, I was doing regular exercises, and I knew my blood pressure was in very safe ranges. This should be a cakewalk, right? After he started looking me over he noticed the lymph node on the right side of my neck. He got concerned about it because it was still enlarged. Just to be on the safe side he wanted me to have a CT-Scan done of the lymph node. I scheduled the scan and didn’t give it a second thought.
A few days after the scan, I got a call from the doctor. The scan didn’t look good and he wanted a biopsy of the lymph node. Huh?! I was thinking this might be a bit overboard for a sinus infection, but he’s the doctor. I scheduled the biopsy. When it comes to health issues, I’m really not all that good at putting two and two together. My wife, on the other hand, was way ahead of me. She told me they were testing to see if I had lymphoma. A whatoma? “Paul, they’re testing to see if you have cancer,” she said. Indignant, I said “Well, that’s just stupid – I don’t have cancer – I had a sinus infection. Cancer, yeah, right…!”
Several weeks had passed since the biopsy and we had not heard anything. Finally, one late afternoon in October 2005 I called my wife from my office and asked if we had heard anything from the lab. There was a moment of silence on the phone. Almost instinctively I knew what I was about to hear was not going to be good. My wife told me I had non-Hodgkin’s lymphoma. I asked what that meant. She said, “Paul, you have cancer.”
In that moment, it felt as if I had just been tackled by the whole defensive line of the Green Bay Packers – I was almost breathless. I didn’t say anything else to my wife except that I was leaving the office and would be home soon. I hung up the phone, thought for a moment on what I had just heard, and then I started to cry. Even an unspiritual person will find times when there is nothing else to do but pray. Having a close relationship with God, that’s what I did in the midst of this sudden storm I was in. I folded my hands on my desk and prayed to God what is probably the most common prayer of all: Why?!
That was my first reaction to my cancer diagnosis. There was a bigger and more devastating reaction to occur on Friday, November 25, 2005. That’s when I found the specific type of lymphoma I had: mantle cell lymphoma, an aggressive type of non-Hodgkin’s lymphoma. In 2005, mantle cell lymphoma was incurable and the years of life left for a mantle cell patient from diagnosis could be counted on one hand. There were aggressive treatments that could prolong the inevitable but nothing that would save my life. I’ll never forget November 25, 2005, and the crushing weight that fell on my wife and me that day.
Later that evening when I was alone, I thought about everything that just happened that day and the realities of my prognosis. My thoughts immediately went to my family. My wife and I have been together since high school and it was always our plan to raise a family, grow old together and enjoy life. My son was in college and my daughter was in high school. What would happen to all of them?! As I thought about all the things I’d miss, a real big hurt happened: Who would walk my daughter down the aisle on her wedding day?! I cried my eyes out. By the time I crawled into bed I had been overwhelmed by negativity and I was an emotional wreck.
On the surface, this would sound like an all-too-familiar “too bad, too sad” cancer story, but please remember: This all took place in 2005, and now, many years later, I’m still here. Best of all, I’m cancer-free! Now I want to share my story of hope with everyone who has to live with a cancer diagnosis. To read about it, and to learn how I came to cope with cancer, read my "Seven Steps to Persistent Perseverance."
Diagnosis: Chronic Lymphocytic Leukemia
My reaction to being diagnosed with CLL, chronic lymphocytic leukemia, was that I felt like I was punched in the stomach. I was 49 years old at the time and had just gone for a routine physical. My family doctor called me around dinnertime and asked me if I had any cuts or marks on my skin that looked red or infected. I remember saying no and asked why. He replied that my white cell count was rather high and he was going to arrange an appointment for me at Green Bay Oncology.
An appointment was made for me, and I went and had labs and met with an oncologist who told me I had CLL. He explained that it is an older man's disease, and I was very young to have it. He also said that I probably wouldn't need treatment for 15 to 20 years, because it is a very slow growing leukemia.
I remember going home and telling my wife what the oncologist said and her reply was, “There is some mistake here. You are way too healthy to have this.”
To make a long story short, I cried. I remember saying, I need this like a hole in my head. I had a very high-energy job and thought this could really hinder my work. As time went on this proved to be very true. After being somewhat reassured that treatment would be 15 to 20 years away, we accepted the diagnosis and tried to put it out of our minds. Little did we know that in less than five years, I’d need extensive treatment, and our lives would change forever.
Diagnosis: Pancreatic Cancer
I always thought that if I ever was faced with a major illness, it would be cancer. Both of my parents had cancer, and other relatives, too. However, I was not expecting it now. True, I had type 2 diabetes, but I controlled it mostly with diet choices. Then, leading up to the diagnosis of pancreatic cancer, my blood sugar had been steadily moving up. That led me to my doctor, tests and discovery.
When I asked my team at Froedtert Hospital exactly where in the pancreas the tumor lurked, I learned it was in the head of the pancreas. My doctor said it is a “high rent” area with a lot of organs nearby. The upside is that, being in this area, the cancer may not have spread to other organs; symptoms of discomfort often show up sooner than when the tumor is elsewhere in the pancreas.
Pancreatic cancer kills about 75% of those diagnosed within a year, and I knew this. In the weeks until a finding that my tumor was operable, with a bit better prospect, scenarios of what had to be accomplished swirled through my head day and night. Family to see, papers to get in order, family mementos to organize, and on and on. Thoughts of mortality, the meaning of life and beyond are always there.
My natural sense of humor has been big too. It makes me happy when I can make the medical team laugh – yes, laugh. It is also a part of showing “spunk” to face the future. It helps that my fiancé, John, is a funny man. We can cry, but we still know how to laugh.
Diagnosis: Gastrointestinal Stromal Tumor
I’ll make clear, right up front: In my cancer experience, I was very lucky. My tumor was surgically removed, and is not likely to return. I didn’t need to undergo chemo or radiation therapy.
So I have no complaints. Not that I complain about much anyway (except cell phones). I know that many cancer patients are going through much worse than what I did, so I have doubts that I have anything to contribute to this project. We’ll see.
I thought, at first, I had no symptoms. But then ... maybe I did. As long as a year before my diagnosis, I’d lie down to read for a few minutes or a few hours before I fell asleep. My hand brushed against my abdomen, just south of the xiphoid process, and I’d sometimes think I felt a little lump. (The xiphoid process? You know, that little triangle at the bottom of the sternum, that you don’t want to break off when doing CPR.)
So why didn’t I rush to my doctor and get it checked out? Sure, sure, good advice — great advice — in hindsight.
It’s because I have a fear of becoming a hypochondriac. If I went running to the doctor for every ache, pain, and physical oddity, I’d be visiting her every week. (By the way, I have yet to discover the exact term for a fear of becoming a hypochondriac. Can anyone out there help? That kind of thing is important, in my line of work.)
A routine appointment with my primary care physician, Dr. Joan Milott. A blood draw (to see if my cholesterol is still high) and a physical exam. All pretty routine. Up to the point where Dr. Milott thumped my abdomen. At which point she said, “Hmmm. I wonder if your liver’s enlarged. Let’s schedule an ultrasound.”