After 2 years of a mismanaged illness, the inevitable happened. My father in law passed away of Renal Cell carcinoma. Sadly, I don't think my wife's family learned anything from this entire experience, so I feel the need to tell his story SOMEWHERE. I guess SL will do.

Be forewarned, this will be long.

I love my wife dearly. We have our problems and our own weird way of dealing with them. The biggest obstacle our marriage has faced was how I looked to her family. Before "Big Evil Karl" came into Michele's life, she was a churchgoing catholic school teacher who never did anything wrong. She was a complete goodie-two-shoes where I am, well, let's just say - anything but.

The biggest problem I saw with her family based on the time I spent with them was the fact that they had major communication problems. When times were good, they never had any problem talking about how good things were. But when times were bad, their heads plunged straight into the sand. I'm a talker, and I learned ages ago that communication is pretty much what sets our species apart from all the others.

Roughly 2 and a half years ago, Michele's dad complained about some pain in his hip when he walked or was working. Being the owner of his own construction company for 20 years, he chalked it up to aging. After living with it for 6 months, he decided to have it checked out since it was impeding his productivity at work.

This is when the nightmare started.

The doctors did a series of x-rays and scans. One day my wife came home and said, "The docs found something that looks bad in the CT scan of my dad's abdomen. Can you call Art and have him come by to look at it?"

My friend Art is a guy I met here in NJ. He was attending UMDNJ (medical school) when I met him, and at the time Michele brought her dad's scans over, he was JUST about to start his new job as chief surgical resident at Cincinatti Children's Hospital. It was just by dumb luck that he happened to still be in the NJ area when Michele showed him these scans.

Art doesn't mess around. He is the most brilliant person I know both academically and intellectually. If he doesn't know something, he won't BS about it, but when he does know about something he will be the first person to voice his opinion. When he looked at his scans, he showed Michele a large area that was obviously a "mass" of some sort. He looked my wife square in the eye and said, "Michele, that has to come out right away, no If's, And's or But's about it."

Michele asked Art if he would visit with her mom and dad regarding his scans, and he agreed. He visited with them for an hour or two and asked what his current physician wanted to do about this obvious tumor. The course of action was to find the "source" of this tumor - they didn't feel that this tumor was the primary tumor, and rather it was the metastises of another nearby tumor. Art agreed when the diagnosis read to him was "Renal Cell Carcinoma" - Kidney cancer.

The doctor's course of action was to first remove the offending kidney - but do nothing about the other tumor in his pelvis. Art said that was clearly short-sighted as there was clearly NO benefit to leaving this other growing mass in his pelvis. This seemed like very simple logic to me. Art said very simply that if these doctors were going to take this route, he should really take his illness elsewhere. At the time of his diagnosis, he had very good group health insurance that would allow him to take his illness pretty much anywhere to be treated. Now, Art knows all about the hospitals of New Jersey as he had practiced in most of them during his various residencies. Be it through direct knowledge, or the knowledge of his colleagues/classmates, he knew all there was to know about the hospitals in our area.

He flat out told him that if he stays at Hackensack UMC, he's making a very poor choice.

Here is where my experience comes in. I work with a guy named Patrick at Citigroup. We've been "Cubicle Cellmates" for years. Patrick is a cancer survivor. He had a very rare cancer that only 20 people in the world had at the time he went through it.

He was the only survivor of his particular form of cancer when he suffered through his ordeal. The other 19 who were diagnosed in the same time period as him had all died. The difference was how he was treated. When Patrick was first diagnosed, he went to his local hospital in Jersey City, NJ. He was isolated from all other patients because his leukemia was a very "hemmoragic" leukemia. He was losing blood all over the place. Just touching him could make him bleed severely. His wife saw that he wasn't getting appropriate or even remotely aggressive care and called Memorial Sloan Kettering Cancer Center in NYC and arranged to have them call his doctor in Jersey City.

After a brief conversation about his condition, they transferred him to Sloan. Patrick was treated like a complete piece of clinical meat. They poked him. They prodded him. They loaded him up with chemicals in an attempt to try and beat this particularly aggressive form of cancer. Nothing worked.

He had his last rites read to him on three separate occasions. On the last occassion, he was bleeding out so badly that they had SEVEN large-bore IV's pumping blood back into his system, that's how fast he was losing it. His doctor didn't give up even at that point. He went through all of Sloan's research regarding his cancer and tried every single EXPERIMENTAL treatment they could.

As it turned out, it was one of those experimental treatments that saved his life. After administering all the chemical agents they could into him, the doctor said, "That's all we have, we don't have anything else we can try that won't kill him."

The following morning the doctor was making his rounds and thought that he would simply be signing a death certificate for Patrick. But he was SHOCKED to hear that he was still alive and actually TALKING the morning after they administered these experimental treatments. At that point he had enough strength to continue fighting his cancer, and with the help of this now-FDA approved experimental drug, Patrick is cancer free.

The cost? Nothing to Patrick. Sure, Sloan's billing department still sends him a bill for what insurance wouldn't cover - just over $1,000,000. But according to the doctors there, they only do that as a formality in the event that they cured someone rich who can actually pay it. Patrick still visits Sloan every 6 months for a screening to make sure his cancer hasn't returned.

Patrick also offered to tell his story to Michele's family in hopes that maybe they would consider taking him across the river into NYC - a mere 6 miles from where we live.

Michele's father's answer? "No, I don't want to go to NYC, I trust my doctor at Hackensack. I think we'll be able to beat this."

Art, Patrick and I were anything but optimistic about that.

The initial surgery happened. They removed one of his kidneys - unfortunately his stronger of the two. Their thought on this is that the secondary tumor may "stop growing" if they remove the "source" of it. Art's take: "That's silly. Cancer spreads and grows on its own, it isn't fed from a cancer well."

But this doctor got my father-in-law to trust him. It's what doctors do.

The next step was Chemotherapy. After literally TWO MONTHS of inactivity, this doctor comes back and says, "OK, I did some research and found that Interleukin therapy might cure this, so let's try it."

They did two rounds of Interleukin therapy.... then what?

Nothing. Months went by as they hoped for a response. They did another set of scans. Not only did his pelvic tumor grow, but he now had spots in his lungs and legs. It had spread further. No one in Michele's family knew, however - because for some reason no one wanted to talk about it. It was just such a "depressing topic", they just wanted to "be positive" and not discuss how bad the situation was.

My wife and I fought constantly about this. At one point, her ignorance about her father's conditions made me think about what would happen to one of us, or worse, one of OUR CHILDREN if we became seriously ill. I kept trying to drill into her head that her family was NOT handling this situation well at all, and that if this trend keeps going the way it's going, her father would likely die. They had put complete trust in this doctor, and after even showing her PROOF that this guy was not ready for this challenge, she basically conceded that she could do nothing. (I showed her a $25 report on this doc. He was literally 4 years out of his med school rotations).

I never felt so helpless. Now, I have no love for Michele's family, but you have to feel sorry for a guy who did nothing but construction for 40 years, only to wind up sick and potentially die before he even gets a chance to enjoy his retirement (he wasn't slated to retire for another 3 years).

They finally had him in for surgery to remove his pelvic tumor. This happened early this summer. The news after this "Successful" surgery was that the tumor was the size of a grapefruit. They had to remove most of the left pelvis, but they did their best to leave JUST enough to do a hip replacement. After the surgery, they sent him home with a walker and investigated other therapies to get his cancer under control. They looked up another drug called "Sutent", and decided to try that.

Of course, by this time, 2 years had gone by since the initial diagnosis. He had dissolved his business since he could no longer do construction. This meant that his Health Insurance had run out and he could no longer afford to pay the premiums on a single plan with the pre-existing conditions he has (and yeah, cancer is a pretty bad pre-existing condition to a health insurance company).

This left him with nothing but Medicare and AARP - but somehow after 2 months they managed to get him on Sutent which costs roughly $3000 per dose (and that's just his COPAY).

He got through maybe a week of Sutent. But his pain was so heinous that he couldn't move. All he could do was lay in bed and take pain killers. I pressed again to get him to a cancer center - but EVEN AFTER ALL THIS, they trusted this doctor and wouldn't take him anywhere else. Not that it mattered - I doubt any cancer center would take a stage 4 patient with no real medical insurance.

They admitted him to the hospital around a month ago and did more scans. Now his cancer is in his legs, arms, lungs, brain and spinal fluid. He's no longer coherent as the tumors in his brain are making him loopy.

This is where doctors start to show their true colors. The doctor calls for Radiation treatments for his brain tumors in an attempt to shrink them. Of course, anyone with the ability to use google already knows that renal cell carcinoma is HIGHLY resistant to radiation. But they trust this doctor and go along with it.

It doesn't help.

2 weeks later he is screaming in his bed, "God almighty, Kathy I can't do this anymore!" (Kathy is his wife). My wife is hysterical, yelling to everyone that they have to do more to save him. But by this time it's too late. The family decides to stop treatment and do whatever they can for pain management. He's at the point where not even a morphine drip takes the edge off - he has to use a morphine drip and a patch of some sort to keep the pain at bay. The side effect: he can only stay awake for seconds at a time.

My wife came home last night very upset. As of last night he could no longer communicate. He could gesture yes or no with his eyes, but that was about it. When asked if he was in a lot of pain, he simply gestured yes and they gave him as much pain medication as they could. Shortly after 6am, the phone rang. The hospital said that the family should assemble at the hospital as soon as possible this morning.

They neglected to mention that he had passed away at 5:20AM.

There are many things you can learn from this story. But here are the most important ones:

1. The medical profession is a business like any other. Be skeptical.

2. Buy the most you can afford with medical insurance. It could be the difference between getting average care and exemplary care. It COULD mean the difference between life and death. You don't buy homeowners insurance to fix a leaky pipe - you buy it IN CASE YOUR HOUSE BURNS DOWN. Treat medical insurance the same way. You might think you never get sick, but does anyone truly see cancer coming?

3. Never trust just one doctor. Institutions like Sloan has a team of no fewer than 7 doctors per unit - in an effort to bounce things off each other.

4. COMMUNICATION WITH YOUR FAMILY IS KEY. If you love your family member, you will do anything to make them better. Be annoying. Be ornery. Don't take no for an answer if you feel that more can be done. DON'T be afraid to hurt someone's feelings if you think they're not doing enough.

5. The words, "You have cancer" means the same as "This will kill you if you do nothing about it." Do everything you can to get rid of it. Surgery, chemo, radiation, experimental drugs, homeopathy, ANYTHING. NEVER limit your options. Limiting your options could do you in.

 

WOW... is all I can really say after reading that sad sad story. I wish your family and your in-laws family the best at this very hard time. Also thankyou for the words of advice at the bottom of your story, I will put them to use if I ever get put in the situation that you were in.

 

Wow, is all i can say, some words of sadness and inspiration all in one. Sorry to hear this... But as some say, maybe hes in a better place now... Best wishes to you and your wife.