From my book “How to Live Like You Were Dying: Notes From a Cancer Survivor” published 2005.

Chapter Two

“Doctors are whippersnappers in ironed white coats
Who spy up your rectums and look down your throats
And press you and poke you with sterilized tools
And stab at solutions that pacify fools.
I used to revere them and do what they said
Till I learned what they learned on was already dead.”
Gilda Radner as quoted in the New
England Journal of Medicine

Four months before my “death sentence” I’d gone to a physician for a check-up. My symptom was that I was feeling more and more lethargic. Lethargy. For me it was that feeling that keeps you sitting when you know you should be moving.

It was like an old Southern preacher might say “Boy, you a just feelin’ puny”.  And I was.

Normally, I did many things simultaneously, I multi-tasked very well. I owned and operated two successful and busy restaurants. I ran a blues karaoke show three nights a week. I booked (and sang) in bands on the weekend. I was active in church. I was a good parent with a busy adolescent daughter. I owned and managed some rental/income properties. I traveled nationwide and consulted for other businesses. I wrote and kept continuing my education. I kept on the lecture and seminar circuit. I didn’t have time to be puny.

Yet here I was sitting at this physician’s office (not my oncologist) trying to find a physical cause for not feeling so robust. In the physician’s infinite wisdom he prescribed me an anti-depressant! I knew something was wrong, but I didn’t think it was depression. But, like a good patient, I took the medication.

Actually I took only one dose. Wow… If I was depressed, I’d stay depressed because I didn’t like the reaction that drug gave me.

Three days after my visit with that physician I thought I was having a heart attack. “This is ironic”, I thought, as I pondered my fate. I’d just sold my biggest, busiest, most profitable flagship fine dining restaurant. There I was hosting a farewell party to my customers, employees, and friends and having a coronary at age 42. Surely this was a cruel twist of fate. Once I’d cashed out on this restaurant, I’d really “cash out”.

Of course, really dying never crossed my mind.

There was good news. I wasn’t having a heart attack. The emergency room physician was certain. But there was another problem. My spleen had ruptured. It was a small rupture, he assured me. But a ruptured spleen was still serious. The spleen is the “brain” of the lymphatic system. The lymph system, coupled with the blood and circulatory systems, helps rid the body of toxins. If the lymph system shuts down, death comes from toxemia (blood toxification) in about 24hours.

But that wasn’t the biggest concern the doctors had about my health. And I was still oblivious to my mortality. I never considered I could die.

My bigger health concern was what the medicos called ITP, this is short for a big phrase: immune thrombocytopenic purpura. Sometimes the “I” stands for “idiopathic”– which means the doctors didn’t know the origin of the disease. ITP is a blood disease that affects about 1 in 60,000 people and attacks platelet production in the blood. Platelets are the part of the blood that helps the blood coagulate and clot.

In addition to clotting the blood, 2% of the serotonin, a mood elevating neurotransmitter, is stored in platelets. This substance is involved in such processes as sleep/wake cycles, biological rhythms, appetite, and mood regulation. Not enough serotonin can cause a body to feel lethargic. Low serotonin levels can make one feel puny.

Normally the ‘danger low’ level for platelet ratio in the blood is 30,000 per micro liter (p/ml). Normal platelet levels are about 150,000 p/ml. My platelet count was zero.

According to the phlebotomist and laboratory staff at the hospital, I had no platelets in my blood. And yet, no thought of death went through my mind. The doctor said it was serious. So serious, in fact, he kept me in the hospital for 10 days. During the 10 days I found there really isn’t a ready cure for idiopathic ITP. There is only treatment of symptoms.

So we tried treatments. We tried antibiotics in heavy doses, we tried corticosteroids (Prednisone), we tried immunosuppressant, we tried immunoglobulin (IVIg) treatment (transfusions) on 3 separate occasions, the hematologist wanted to try Rituxan (a chemotherapy treatment), and we tried more treatments. The American Society of Hematology treatment guidelines suggest trying all those symptom fixes and eventually  removing the spleen. I wasn’t too keen on a splenectomy.

My unscientific research showed that only 30% of the patients who had the splenectomy had permanent relief from ITP. Most had symptomatic relief for 24 months or less. I didn’t want to risk being in that 70% of patients who were without a spleen and still sick. I didn’t want to still be dependent on steroids and the other treatments. I wasn’t too keen on all those drugs either. There were considerable side effects with each “treatment”.

My attitude changed about 2 months later as my ruptured spleen became more and more painful. After awakening at 5am with excruciating pain a couple of mornings, I made a phone consultation. The advice nurse (after consulting with the physician) suggested I come in for an exam. I went into the clinic for a CAT scan. After the CAT scan, I knew something was wrong. The radiologist would hardly talk to me.

The India born doctor’s face nearly turned ‘white’ as he interpreted my CAT scan results. He wasn’t giving me a straight answer. When I couldn’t get a straight answer about the CAT scan from the radiologist, I knew somebody wasn’t telling me something. In these circumstances silence isn’t golden. It’s suspicious.

So, I pressed for an answer. After I pressed the issue, the radiologist said he wanted to get a second opinion before he talked with me. He called for a consultation. He was waiting for a surgical physician to arrive.

A surgical physician, I queried. And although I didn’t want to wait, I did. I wanted to leave the clinic. I wanted to get control of the situation by leaving. But I couldn’t find my pants.

Nobody could find them. There I was in a hospital gown (from the CAT scan) and nobody could find my pants which held my car keys, wallet, and cash. I had to wait. The radiologist knew I wouldn’t have waited, if only I had my pants!

Finally after about an hour and a half, during which the radiologist had made himself very scare, the surgical physician came and viewed the CAT scan. After a brief consult with the radiologist, he was very blunt with me. He told me directly, “There are only two ways you’re leaving this medical facility—Number 1, Dead or Number 2, Without a spleen.”

Yet I still never considered I could die. And a splenectomy looked pretty inviting at this juncture.

In no time I was whisked to a waiting ambulance (where my pants, car keys, and wallet miraculously appeared) and was sped off to an intensive care unit (ICU) to get prepped for an emergency splenectomy.

Apparently the best way to keep a 310 pound 6’4” shaved bald loud-mouthed Scotsman in place is to “misplace” his pants. Just in case you need this information, I’ll add it here. I hope you never use it.

I earnestly tried to get my ambulance drivers to go to the drive thru at a fast-food chain on the way to the ICU. I hadn’t eaten in 18 hours or so. I offered them a $50.00 tip and to buy them dinner if they would just stop for a milkshake or something. But they had integrity. They didn’t stop. They kept my white Scot self strapped to the gurney and wheeled me right up to the surgical prep area.

The ICU nurse angrily made me get off my cell phone. (I was calling a friend to let somebody know where I was). Then there was an IV hook-up.

And then … The next thing I remembered was waking up in the recovery room. I was in pain and my throat hurt. Little did I know what happened.  I’d gone in for surgery on Tuesday and naturally thought it was Tuesday when I came to. It was Saturday. I’d been on a respirator for 4 days.

No one was sure if I’d come back from this surgery. When the recovery room nurse told me it was Saturday, I was sure she was mistaken. Certainly I wasn’t THAT close to death. I found my ‘routine’ 1-2 hour splenectomy surgery took about 8 hours to perform. My ruptured spleen had attached to my stomach and pancreas. Because of this attachment, the surgeon had to cut minute parts of my stomach and pancreas away to get the extra-enlarged spleen out. It was very tedious work, he told me later.

My surgeon was a training physician. He was about 60 years old with grey balding hair kept in place with hair cream from his era. He was recently divorced (again) and felt like he didn’t have too much to prove. His style was that of an outlaw cowboy. He wore western garb and cowboy boots as he made his rounds in the hospital.

I didn’t know if he was a 25¢ Hawkeye Pierce substitute from the TV show M*A*S*H or not. But as we talked, I found out he was a real cowboy and a real good surgeon. He was also very direct. I liked that about him.

As a training physician, he was originally going to let a resident do the splenectomy, but when they looked inside, it was a job for him. Matter-of-factly he told me that most doctors couldn’t have done what he did and kept me alive. I’d lost too much blood and had no platelets to stop the bleeding.

He had performed a miracle, he said. I believed him and thanked him. All the while I was still denying my mortality. He and the other doctors kept me in the hospital for about 3 weeks this time. I was losing weight. I’d started this odyssey at over 300 pounds and now I weighed about 240 pounds. I didn’t mind losing weight, I was sure that getting skinnier was healthier.

After my release from the hospital and in my first visit to my surgeon’s office, my cowboy surgeon told me the weight loss was normal. I’d had part of my stomach removed. I couldn’t yet eat normally. My stomach would heal at a different rate than the rest of my body. It was normal to lose a little weight.

And it was normal to feel weak. Being on a respirator would slow anybody down, he said. I’d lost a lot of blood. Weak was normal. He told me I’d get my sex drive back too. I was worried and had asked. My “equipment” didn’t seem to be working and I’d had no “urges” for a couple of months. This was an unnerving and new situation for me. I had to ask.

He said pain-killers will do that do a man. Talk about motivation to get rid of pain-killers! He reminded me, my sex life was secondary, and after all, I’d almost died. He pulled no punches when he told me that, yet I still never considered the possibility of death.

But he had more surprises.

He tossed a folded sheaf of papers at me and said “Ya might wanna look at these”. I didn’t take offense at the brusqueness of this doctor delivering a message like that. I just looked at the papers.

“Know what those are?” he asked “That’s your pathology report from the spleen tissues I removed.” I thought he was just being informative until I looked more intently at the papers. Then I just shook my head. “Do you know what it means?” he asked.

As I read the papers, the words “malignant” “cancer” “lymphoma” and “advanced” jumped out at me. My heart sunk. “I know it ain’t good” I replied.

“Yep, I made you an appointment with this hot-shot oncologist. I think you should go.”

So I did.

And as always, Your mileage may vary.

Dr Jay