Time to Come Clean

Through the summer, I wrote about dealing with anemia.  Then, in September, I wrote about having major surgery (an open nephrectomy) on Facebook.  I talked about it here as well,  but not much detail about what was going on.  I kept pretty quiet about how I got from one place to another. In the last 5 days, things have taken another twist, and not for the good.  Some of my reasons for keeping this all to myself have now evaporated, so I'm going to write about it now.  This is likely to signal a major shift in the focus of my blog - one that I wish wasn't happening, to be honest.

So, over the summer, I was tired and lethargic. I was struggling in the gym and eventually, I was struggling at everything.  One day, I was out fly fishing with friends mid-week, and I went back to my car for a short break and some caffeine.  I ended up taking a 90 minute nap.  Later that day, I found a rock in the middle of the stream and just sat there for 30 minutes.

Doctors were doing test after test, for lots of common and really rare stuff.  Everything kept turning up negative.  For a while, we thought it was celiac disease and I started wondering what life would be like without pizza and beer.  To be honest, I would trade my current diagnosis for celiac in a heartbeat.

In late August, my wife and daughter were away for the day.  I hoped to fish.  But, I felt worse than ever. My breathing was compromised. My side hurt. Alleve, which had been helping, didn't touch this pain.  I thought about having my son take me to the hospital, but I held out for a few hours.  But, when my wife got home, I had her take me to the ED.

Luckily, they believed my story and I got some Dilaudid right away.  These days, walking into an ED and getting pain meds is not automatic.  Then, the doctor asked a very key question: "Has anyone done any imaging on your abdomen since this started?"

I told him that my primary care doc had been reluctant to even do blood work, until I practically forced him to order it.  Then, once the anemia was found, I was sent to a hematologist.  Hematologists are worried about blood, not diffuse pain in your abdomen.  So, the three different docs I'd seen all summer had completely ignored the pain in my side, and the last doc had done every test he could think of to determine the cause of the anemia.

The answer, as it turned out,was in the imaging.  I had a CT scan done at the emergency room that Saturday night.  Most small or mid-size hospitals don't have a radiologist on staff at that time of night, especially on a weekend.  Instead, they employ on-call services and send the images out to be read. While the hospital was sending out the images, the local ED doc took a look.  He immediately came back into the room and told me that there was a very large mass growing on my right kidney.  He said it was most likely kidney cancer.

Things started to move fast.  I told the ED doc that I wanted the images and report sent to my urologist.  I got a Monday morning appointment with the hematologist.  I got some oxycodone so I could sleep through the pain.  From there, it was appointments and lots of  tests (blood tests, MRI, bone scan, X-ray, EKG, etc).  The goal was to do proper due diligence and get me to surgery quickly.  The reason I was having troubles breathing, as the X-ray showed, was that the tumor had gotten so large that it had partially collapsed my right lung.

The last test was the MRI, done with and without contrast.  The doctor wanted to save my kidney and he wanted to know if the tumor had gotten into the blood supply of the kidney.  The MRI was inconclusive, so the kidney had to go.  In mid-September, I had a radical open nephrectomy on the right side, plus they pulled out a six pound tumor, a rib, scraped the surface of the liver, and pulled out two smaller suspicious nodules.  We knew from the MRI that the lymph nodes were clear, so none were taken.

Nine days after the surgery, my wife and I met with the surgeon.  He told us that it wasn't kidney cancer, and for a second, I thought maybe I was OK.  But, he continued and told me it was liposarcoma - a very rare cancer, and I had one of the more dangerous forms of liposarcoma.  The full diagnosis was retroperitoneal dedifferentiated liposarcoma.  There are probably 250 or 300 similar diagnoses in the US each year.

It's a cancer that tends to recur, especially the dedifferentiated form.  The earlier it recurs, the worse things usually are.

I was scheduled for a consult at Dana Farber in early November with a sarcoma specialist,  But, without a new baseline scan, she didn't want to consider any immediate treatment.  Last Friday, I had a CT scan to look for any new growths.  Regretfully, there were three new nodules and some evidence of metastasis (described as hypervascularity) along the serosa of the liver.

That afternoon, I saw a surgical oncologist and a medical oncologist.  The surgical guy was very matter of fact. We cut here, we cut there, we resect the colon and the large intestine, and we get it all out. He never mentioned the liver and he just seemed glib - like it was all too easy.

The medical oncologist is a sarcoma specialist.  She said there is a distinct east coast vs. west coast style for many sarcomas,  including liposarcoma (Rappers and sarcoma docs, going after each other, I guess).  On the east coast, people do surgery for almost every recurrence. Until they can't.  And then, they do chemo or radiation.  The medical oncologist said that works for some cases, but it usually just buys time.  The west coast style is much more interventional early.  She described it as higher risk with potentially higher reward.  She suggested chemo, then surgery at Sloan Kettering, and then radiation.  She said it might still be curable, although the odds aren't great.  But, the interventions might at least buy a few years without disease.

So, I agreed to go with her plan.  Yesterday, I had a PET scan (no additional sign of disease), an echocardiogram (one of the chemo agents is fairly heart toxic), and I had a chest port installed.

Today I started inpatient chemo and I'll be in the hospital for Thanksgiving.

But, I already have a lot to give thanks for.  I'm not ready to give up on this life yet, but I've lived the hell out of it so far. I have two great kids, a wife of 29+ years that still makes me feel lucky every day I'm with her, and a job I like.  And, I've got a lot of great friends - near and far.

So, I may be in the hospital on Thanksgiving, and I have a serious cancer, but I'm still giving thanks for all the great things that make up the rest of my life.  Including the fact that I'm well insured and I have access to outstanding medical care.

Right now, I think the one chemo agent, doxorubicin, is telling me that it's time to get some sleep.