On October 6, 2000 I began my dance with the dragon. What started out as my being a bit anemic a few months earlier and having a little difficulty swallowing was diagnosed as Stage II esophageal cancer. For those not familiar with this disease, I would like to recommend a visit to Cathy's EC Cafe. Along with much information, you can read the stories of people who did not survive esophageal cancer. You can also read the stories of those who are beating the disease.
Ever since the word has gone out to family and friends, our phone has been ringing off the hook! The outpouring of support has been incredible and if support alone will get me well, I'll probably live another 50 years! I would like to use this page to provide easily accessible updates on my progress for those interested.
I guess the cancer has been developing for quite some time. I have suffered from reflux for years and just learned to live with it. Now we find out that reflux can lead to GERD (Gastro-esophageal reflux disease) which can become cancer. Not going into the mechanics of the thing - you can find this information on a million web pages.
In April of this year the doctor took a blood specimen and found I was a bit anemic. The lab results came back with instructions to have another test. Being a guy and feeling just fine, I didn't. By June I was suffering from pretty extreme tachycardia (rapid heartbeat). Being a guy, I pulled out the wife's Physician's Desk Reference and discovered that tachycardia can be caused by the Zantac I was taking for the reflux. Being a guy, I figured I had discovered the source of the problem and quit taking Zantac. And the tachycardia started to be less of a problem. I did notice that I was feeling pretty weak, but - being a guy...
I went back to the doctor in August for another problem (you know that TV commercial where guys are driving around with an Porta-Pottie on a trailer behind the car... yeah, THAT problem) and the doctor noticed I had not followed up on the anemia. Back down to the lab for another blood test and this one came back with a hemoglobin reading about half normal. He put me on heavy iron supplement and scheduled an appointment with the GI doc.
The GI doctor wanted to set me up for endoscopy ASAP, but we were leaving for two weeks in Europe, so the test waited until 10/5. It wasn't good. The doctor found a friable mass that bled badly when he tried to remove it. He took tissue samples for biopsy and I received the bad news phone call on Friday, 10/6.
Things started to move quickly after the endless weekend when Candace and I tried to understand how much our lives were about to change. Had a CAT scan on Monday, 10/9, followed by a meeting with my thoracic surgeon on 10/10. He gave me the staging information and you can not imagine the relief we felt when we were told it was operable and had not (apparently) metastasized to other parts of the body. I had gotten exactly what I wanted at that time - a possibility to beat this thing. There are no guarantees with cancer, but we felt like we had a chance.
Wednesday we met with the radiation oncologist and on Thursday (10/12) the tattoos were placed to mark the site where radiation will be administered. There is only one doctor left on my team to meet and I will be seeing the medical oncologist on Thursday, 10/19. From there we should be headed into radiation and chemotherapy followed by surgery.
My medical team will be:
10/19/2000 - Met with Dr. Yaffe today. He has me scheduled on Monday to have a "port" installed. The port is an access point to a vein to make giving IV administered drugs easier. It sounds like a 2 hour procedure to install the port and will be done at the Kaiser Glenlake general surgical facility. The doctor is setting up a chemotherapy regimen of 5FU to be given via a portable pump with cisplatin and taxol to be administered at the Infusion Center. Sounds like we will be starting with several weeks (6-8) of chemotherapy to be followed with radiation and then surgery. Chemo treatment will begin on 10/25 at 09:00. And yes, the Doctor said the hair was definitely going!
The doctor is guardedly optimistic about the outcome. No guarantees, but the fact that my general health is good, eating well, have not lost a lot of weight and am able to carry out normal functions all are positive signs. The bad thing is that the tumor is approximately 7cm long - a big mass and the larger the tumor, the worse the chances for getting all the cancerous cells in the body and the better the chances for a recurrence.
After all this, went to Northside Hospital for a pulmonary function test. Had a cardiac checkup last week and both of these tests are to demonstrate I have a chance of making it through surgery. Looks like both heart and lungs are going to make it... just not sure about the rest of me!
10/20/2000 Had another blood test today and looks like the anemia has finally cleared up. Hemoglobin had dropped to as low as 8.4 back in August; it was 12.2 on 9/27 and it's back to 14.2 today. The mean cell volume (MCV) remains a bit low at 77.1 where normal is 80, but it is a vast improvement over the August reading. Have been taking 650mg per day of iron supplement to counteract the GI bleed from the tumor. There has been an incredible improvement in my level of strength over the past two months. When the anemia was at its worst, walking 100 feet would start my heart to pounding. Now, we are back to our walks around the block without feeling any discomfort.
10/23/2000 The port was installed this morning. We had been told it would probably be done under general anesthetic, but it was done under a local. I should have known when I was given 10 mg. of Valium last week after the appointment was set up. The instructions were to take the Valium before leaving for the surgery and that's not the usual procedure for general anesthesia. However, after taking the 10 mg., I had a pretty much devil-may-care attitude and the doctor could have taken the whole arm with my blessings! We got back home around 11:30 and I tottered off to bed for a few hours. It's now 4:30PM and the arm was a bit achey, but a few Tylenol has made everything ok. Nothing to see on the arm other than a big bandage. Here's a photo of the bandage (how exciting!):
The black and blue bruise at the elbow is a result of the blood being drawn last week. Never had that happen before! My oncologist was looking at the arm during my examination and commented that I had "nice veins!" Doctors get excited about some of the oddest things. After the port catheter was implanted (there is a tube that goes from the port appliance to the superior vena cava into the heart, an x-ray was taken to insure the catheter was properly positioned. It was.
Next adventure will be our first chemo treatment on Wednesday. I hope to have some pictures of the Infusion Center and me as I am hooked up to the stuff. Candace is thinking this is all a bit weird (wanting pictures), but I find doing this web page to be excellent therapy for me.
Had the first session of chemo today and most of the details are found in the photo captions. You can click on the small images to see larger ones. No adverse reactions to any of the drugs (so far), but the bathroom now looks like a pharmacy with lots of anti-nausea pills of various type and other stuff that I don't even begin to understand! Looks like this is about all that's going to happen over the next 2 weeks, so I should be able to return to a regular work schedule next week (the Boss will be happy to hear that!) and for the early part of the following week. Won't bother updating the text part of this page unless there is something to report.
10/28/2000 Well, had the first "emergency" yesterday. While working at the computer, looks like I hooked the end of my chemo tube and pulled one piece of tubing out of the micro-filter assembly. Looked down and found my t-shirt with blood on it and the tube hanging loose. A few minutes of panic as I tried to get in touch with the infusion center (no answer, it was a bit too late in the day) and then the Visiting Nurse Service. Finally had a nurse stop by the house around 8:30PM. The 5FU was not usable since it had been exposed to air and wasn't sterile any longer, but the nurse gave me the good news that the port was still open. A new batch of 5FU is supposed to be delivered today and the visiting nurse will return to get the infusion going again.
The REALLY good news is looks like the Greene Family will be celebrating Thanksgiving twice this year. My father is coming in from Florida and my sister and brother-in-law coming in from Boulder, Colorado on Friday, 11/17 to spend the weekend. The news of their visits is very good medicine! Our plan is to cook Thanksgiving dinner for Sunday, 11/19 and then, do it all over again on Thanksgiving Day when my wife's daughter, Robin, comes in from Duke with her gentleman friend, Andy. I do love turkey with all the fixin's and having it twice in one week! Alright!!