This was an email I sent to friends and family on December 14, 2009.
Some of the fifty or so people getting this email know parts of the story, and some of you haven’t heard any of it. I’ve been debating on how best to let people know, and it seems email is the most efficient. I wanted to get everyone that Beth and I care about up to speed on what is happening.
The Short Version
I have been diagnosed with cancer. Specifically, a 5 cm squamous cell carcinoma (SCC) tumor in my stomach. I’ve been waiting to send this out until I had a stage, prognosis, and treatment plan, but despite a mountain of testing, the doctors have never seen what I have (which has been par for the course during my life).
The Long Version
It started out as acid-reflux, which I’d never had before. It went on for a couple weeks and I went to see my doctor, who recommended anti-acid medicine and a blood test. The blood test showed a high white cell count, so he recommended a CT scan, which showed “inflammation” of the stomach wall, so that led to an endoscopy (where they stick a camera and tweezers down your throat). The endoscopy showed the tumor, so while they were in there they took samples, which were inconclusive and did not show cancer. That was November 4.
Since then I have had 4 blood panels, 3 endoscopies (the last with a deep needle aspiration and ultra sound), a colonoscopy, 3 CT scans, a PET scan, and just this Monday a lovely laparoscopic procedure and abdominal wash where they poked holes through my abdomen to have a look around. And a partridge in a pear tree.
The good news is, of the four times they’ve taken tissue samples from my stomach tumor, only one showed any cancer, and that was from a small nodule in the middle of the tumor. The last procedure, the laparoscopy, they took big chucks of it and could not find cancer. All the other tests and probing I’ve had done show no signs of cancer anywhere else in my body. So right now they’re thinking it is early and contained.
I don’t have a treatment plan yet because the dozen or so doctors that have reviewed my data have never seen sqaumous cells in the stomach. These cells are found in the mouth, esophagus and colon. They do not belong in the stomach. In the worldwide history of medicine, there are less than 100 documented cases of SCC occurring only in the stomach, and most of those are in Asia. So no one believes it. They think it is something else and the testing continues. We’re reviewing the data with three oncologists and if we don’t have some answers in the next few days we go to Mayo, MD Anderson, Moffit and/or Cleveland.
The likely treatment plan, based on what we know now, will include chemo and radiation to shrink the tumor, then surgery to remove it. I am extremely anxious to get the process started, but they want to be absolutely sure what they’re dealing with before they mix up the chemo cocktail.
That’s the medical stuff.
The personal side of this has been brutal on my wife and family. Our dreams, plans and day to day worries have stopped, replaced by endless phone calls, appointments, procedures, visits, research, billing, pills and scheduling. I am 42, have 8 percent body fat, can bench press my weight 15 times and have been married for less than a year. This isn’t supposed to be happening. You don’t see it coming, you don’t plan for it, and when you get the news you stop worrying about all the other petty bullshit that we fill our lives with. I miss that petty bullshit real bad.
When we got the news Beth immediately sprang into action and formed Team Basil; her mom Pam, a nurse for 40 years who knows all the local players, the lingo and how to work the system, Pam’s husband John, an insurance agent who knows his way around paperwork and regulations, and my mom Bonnie who left her comfy home in Florida to stay with us in this wretched weather to do whatever she can.
Then there’s Beth, our project manager with 15 years of Fortune 500 operations management experience who coordinates schedules and the flow of information between specialists and facilities. She has an accordion brief case and can produce any piece of medical documentation within seconds. Every doctor and nurse in southeastern Wisconsin and northern Illinois knows to call her with any news or information. One day we had three phones, two laptops and a fax line working at the same time. Our headquarters looks like a small version of the stock exchange. I pity the medical professional that tries to get in the way of this freight train by telling us the doctor can’t see us until next week. Beth. My sweet Beth. She is pretty and pleasant, but will not hesitate to rip your throat out to get me to the front of the line.
The amount of diagnostic work I’ve had done in the last four weeks would normally play out over the course of months, both for the physical toll and the insurance approvals. But I am a machine and Beth has WPS cowering. The nurses we’ve worked with tell us they have never seen such a battery of tests performed so quickly. We don’t wait for insurance approvals, we write checks (and then Beth recoups the money). We don’t take “no” for an answer. We have been to three different cancer groups in Milwaukee and Chicago. We have the accelerator pressed firmly to the floor.
We have gone through the stages of grieving – shock, denial, fear, anger – and now we have buckled ourselves in for the ride. All I have to do is be a patient. If positive energy, hard work and sheer force of will can beat this, the cancer has already lost.
So there you have it. Physically I’m feeling good, lifting weights as normal and going to work. I’m having fun packing on weight in anticipation of losing it during chemo and surgery. As most of you know, I’m usually pretty careful about my caloric intake, but Bonnie has an arsenal of “what to eat if you have cancer” cookbooks and I’m lovin’ me some home cooking, mom style.
I’m not going to blog about this or talk directly to it on Facebook or send frequent updates, but I wanted to let you know what’s happening. I will email updates at various milestones of the process. Take care and thanks for being there for Beth and I.
[EDITOR UPDATE] It looks like Basil will be blogging about his experience after all.