The Journey; Esophageal Cancer, My Story
In 2005 and for several years prior, I was an active 40-something year old who ran 2 miles a day, rode her horse four to five times a week, competed regularly in dressage shows, worked a full time job as a paralegal and did my artwork on the side. All who knew me or knew of me would say I was a very active, healthy person. Little did I know things were about to change and drastically.
I began having pain with swallowing and having vitamin pills getting stuck in late 2004 and finally saw my PCP. She referred me for a barium swallow. I underwent this screening test for esophageal cancer and it was interpreted as being normal. My PCP then recommended I get an endoscopy but because the barium swallow was normal, I didn't think there was anything wrong with me. So, I didn't pursue the endoscopy. I thought I was just being a whiny crybaby and chose to ignore any further problems with swallowing.
By the way, for those who don't know (I didn't know until I did research after I was diagnosed), the esophagus is a tube that runs in front of the spine. It is behind the heart and other organs so getting to the esophagus via an open chest procedure is not possible (or rather it might be possible, but having to move the heart, lungs and other organs out of the way is not desirable). The surgeons get to the esophagus by filleting one like a fish, going in through an incision along the right side near the spine and sometimes removing a rib or two to get to the site of the tumor (let that image rest with you a moment or two) or if one is lucky like I was, via laporoscopic surgery.
About a year after the barium swallow, I was having significant pain with swallowing and food getting stuck. I also had chest pain at night and felt like there was something rubbing up against my sternum (one might wonder if this was due to the tumor?). I began losing weight because eating became so painful and finally I went in for an endoscopy. I was diagnosed with squamous cell esophageal cancer (EC) on November 28, 2005. I had lost close to 10 pounds by then. I remember spending Thanksgiving with my parents that weekend in Austin, Texas, before I got the diagnosis and having terrible pain whenever I tried to eat a meal. I went for a late evening jog with my husband that Friday night and I felt so exhausted afterwards that I told my mother I really hadn't needed to go on that jog (feeling fatigued was not something I would usually admit). I assured my family that the GI doc' only thought I had a stricture in my esophagus which he planned to dilate at the endoscopy scheduled the next Monday, on November 28, 2005.
Surprise, surprise! My GI doc' was shocked to find a 10-inch long tumor in the middle of my esophagus. He sat there looking at me in disbelief. Here I was a healthy-appearing, active young woman with no risk factors and I had EC. None of the physicians involved in my treatment for cancer were able to come up with a cause; my radiation MD said I was just "unlucky."
Thus began a slew of medical appointments with my oncologist, radiation MD and surgeon to discuss chemotherapy, radiation and surgery. I received tiny permanent tattoos on my torso so the radiation technician could line up the equipment in order to radiate the exact spot every time I went in. I had another appointment to get a PICC line inserted for the 24-hour, 7-day/week chemo infusion of 5FU administered via a pump in a device I had to wear around my waist 24/7 ( we called a "fanny pack"). The PICC line runs up a vein in one's arm and ends up near the heart. They told me the cancer was aggressive and they threw aggressive treatments at me. I had radiation treatments five days a week for five weeks and was on the 5FU during the same five weeks plus I had another weekly IV chemo cocktail of Cisplatin and Taxol. Taxol is such a nasty chemical that the nurses have to use special tubing because it will dissolve regular tubing. The nurses were also careful not to drip any of the Taxol on my arm because it will dissolve human tissue (and this was going into my veins!).
I continued to work full time during the treatment period from the last part of December 2005 until the last part of January 2006. I lost another 25 pounds during this time and had a terrible problem with constant diarrhea. Nausea was also a problem but the diarrhea was the worst; the radiation MD gave me what he said was the strongest medication for diarrhea (tincture of opium) and it did not slow things down. Unfortunately, radiation did not shrink the tumor so I continued to have pain with eating - and eating was the last thing I wanted to do. I finally quit working full time at the end of January because the radiation MD pretty much told me I was insane for trying to continue to work full time during the latter part of my treatment. I was told to stay home, take pain medications and concentrate on eating and gaining weight. Heaven knows I tried to force myself to eat during that time but it was so painful and the chemo had changed my taste buds - on top of the pain, nothing tasted good. (My poor husband, Mike, also smelled like garlic to me during most of my chemotherapy treatment and he didn't eat garlic or take garlic pills!)
Side effects from chemotherapy - in addition to nausea and diarrhea (I didn't actually vomit much), I lost all the skin on the soles of my feet and the palms of my hands from the 5FU. I also had mouth sores from the 5FU. My hair fell out around the third week of chemo and it came out in one, big bunch. I was washing my hair in the shower and suddenly, I had a mass of hair hanging loosely from my head. I cut it all out myself and didn't bother getting a hair cut until after my hair started growing back. I was never completely bald, just had this fuzz all over my head.
I returned to work part time in February and worked up until the Friday before the Monday of my surgery (I even volunteered at a horse show the day before my surgery!). I went through a 9-hour surgery on March 20, 2006 to remove most of my esophagus and attach the remaining stump to my stomach. They pulled my stomach up into my chest and fashioned it into a tube to replace the esophagus (us EC survivors refer to our new "esophagus" as a "stomaphagus"). Fortunately, they were able to do minimally invasive surgery with me and the five surgeons involved did it laporoscopically using micro instruments and micro cameras. I had 12 small incisions in my right side and abdomen as well as a 3-inch incision in my neck (they pulled my stomach up via the neck incision). I was in the hospital for 9 days but out of ICU within 24 hours.
My husband, Mike, who is very squeamish, was there for me during the whole ordeal. I had tubes including a nasogastric tube running to and from everywhere when I got out of surgery. I remember thinking Mike looked a little green around the gills more than a few times while I was in the hospital recovering (hee hee). He is as strong or stronger than I am so he persevered. I never got depressed enough to cry except twice; the first time was when I had to tell my parents I had cancer (that was harder than getting the diagnosis myself) and the second time was after I needed IV fluids again due to the chronic diarrhea (I had to have IV fluids twice during the last part of my treatment pre-surgery). After the second dose of IV fluids, I was so weak, I felt like I couldn't go on anymore and I remember saying something profound to my husband like, "this is a drag." It gets hard for the psyche to carry on when the body feels like it is done. Of course, I made it through, there was no other choice. Well, there was another choice but obviously not the preferred one.
The night after my last weekly chemotherapy session I ran a fever of 104 degrees. I had low fever every day in the evenings starting after the second week of chemo but this was the highest fever I ran throughout treatment. I would always feel like I was freezing to death and try to crank up the electric blanket while my husband "threatened" that he would put me in a cool bath if my temperature got any higher. I would bargain with him over additional covers or setting a higher number on the electric blanket (I usually won). My skin was always cold to the touch when I was running fever. The night I had the 104 fever, I had been checking my temperature every couple of hours or so and watched it climb up and up. I finally awakened my husband at around 2 am to let him know it had reached 104 as we were told to call the doctor if it got that high. Mike did reach an on-call doctor who told us they didn't worry too much unless the fever went up to 105. ("Missed it by that much!" As Agent Smart would say....) Fortunately, I broke the fever a couple of hours later and woke up to soaked sheets and bedding from all the sweat. They stopped the chemo a few days after that because it was starting to do more harm than good - I was most happy to get rid of the 5FU fanny pack and get the PICC line out!!! I was so glad to finally be able to shower without having to hang the 5FU over the top of the rod for the shower curtain and protect the PICC line entrance on my arm with plastic wrap - for the first time in 5 weeks!!! (These minor little events were actually the best.)
Getting back to eating after the surgery was not fun. I coughed up everything I ate because of the irritation in my throat from tubes and surgery. Because my stomach was now up in my chest, the contents didn't have to travel as far to come up in my mouth. I had choking spells in the hospital when they first put me on fluids and I thought I was going to die the first time it happened. My family had left for the evening and the nurses didn't immediately respond to the call button (I was choking so bad, I couldn't talk). They figured out pretty fast that I had to go on aspiration precautions and was to sit up at approximately a 90 degree angle at all times. I was still so scared, I begged my family or my husband to stay with me until the nurse gave me an injection of Benadryl (so I could sleep for a few hours). The surgery I had is rather rare and the nursing staff was new at learning how to care for me, I did not blame them for anything. I received great care from everyone at Providence St. Vincent's Hospital and I continue to receive terrific care from them.
Over the past couple of years, I've had to relearn how to eat, what to eat, how much I could eat at one time, what I could not eat, etc. I've also learned what "dumping syndrome" is... This usually happens after a big meal (which would be a regular portion to most people). Something to do with the (now much smaller) stomach getting overloaded and suddenly dumping all of its content into the intestines. The intestines, in turn, immediately prepare to evacuate everything from the body. Fortunately, although I've had a few near misses, I've always been able to get to a restroom in time. I have missed a lot of work due to problems with nausea and diarrhea. I have also had to go in for endoscopies with dilations 4 or 5 times to stretch out the scarred area in my esophagus as it would tighten up and food would start getting stuck again (and I wouldn't want to eat). (I had my last dilation in Sept. 2007 when steroids were injected into the scarred part of my esophagus and this seems to have worked as I have not needed another dilation since then.)
2009 - Today, I still experience changes in my new digestive system (normal for EC survivors who now have a stomaphagus). I seem to have more problems with dumping syndrome these days but very little nausea. Last year, I had major problems with nausea. I currently have diarrhea every day from morning to early afternoon, I think it is mostly due to dumping syndrome. I know not to eat too much although I occasionally over indulge (i.e., eat a normal portion size meal) and suffer from it (the food stacks up in my stomaphagus and I will usually have to throw up). I take Reglan which makes the stomach more mobile so food will pass through more quickly as I have as much of a problem with food sitting on my stomach as I do with dumping syndrome. There is a delicate and always changing balance. Before going back on the Reglan last September, I would have to throw up to get all the half-digested food out of my system as it caused reflux. I have to sleep on an incline for the rest of my life due to reflux (stomach contents will otherwise come up in my throat if I lay flat). I am 5'10" with a medium-to-large frame and was a fit 165-pounder just before diagnosis. I currently weigh 140 lbs., up from the 130 lbs. I weighed after chemo/rad and surgery. I was up to 150 lbs. until a nasty bout with nausea and the dumping syndrome started in several months ago. Maybe this all sounds bad to some people, but for me, it is my normal way of life (at least until my digestive system decides to make some more changes, hah!). There are many more people on this planet who are far worse off than I.
I continue to work full time, have returned to doing art commissions and I am currently training my 3 year old filly for riding. I ride my older horse every couple of weeks. I no longer jog as I haven't tried to figure out the timing on eating and preventing the contents of my stomach from coming up while I run. One of these days, I'll get that figured out. Compared to other EC survivors, I am doing very well. My last CT scan showed no evidence of disease (NED). I will not be considered free and clear of the cancer until March 20, 2011 (five years after the cancer was removed). Until then, life goes on. There are always bumps in the road but as long as I stay on that road, I'm happy.
The American Cancer Society projects that about 16,000 people in the USA will be diagnosed with EC in 2008. Out of that ~16,000, approximately 14,000 people will die within 5 years of diagnosis. It is a deadly disease and it is on the rise. Be especially diligent with getting medical attention for constant acid reflux or if you have been diagnosed with a condition called Barrett's Esophagitis.
Please check out the following links for more stories and information about esophageal cancer: