What a peaceful dream…
Gentle waves rock me to that place you go just before falling asleep. The sun sooths my skin as the wind whispers her lullaby of rest. I don’t have to be anywhere anytime soon. Here, on my imaginary raft, everything is warm, soft, peaceful, comfortable… perfect.
Still dazed with anesthesia, I notice discomfort radiating from my abdomen. What is that- Struggling to reach full consciousness, I move both hands toward my abdominal area. It’s lumpy…What is that- I wondered. Except
for the pain in my abdomen, I had always been in good health.
Fighting through the Morphine haze
Finally lifting my eyelids, I gazed into the weary eyes of my husband, Abraham. He took my right hand in his, as he did the day we were married. "Honey," he said sweetly, his brown eyes filling with pools of love and deep concern, "You’re okay. You’re in the hospital. You had to have emergency surgery to remove a blockage from your colon."
"The GI doctor performed an exploratory colonoscopy and found a tumor that had completely blocked your colon," he continued. "You needed emergency surgery, so he called a surgeon who removed the tumor and a section of your colon. He couldn't reconnect your colon right now, so he gave you a colostomy."
I was confused and couldn’t grasp what he told me. Surgery- I don’t remember anything. What was he talking about- I wondered.
The oncologist assigned to my case arrived next. Cold and inattentive, he blurted, “Yes. It’s colon cancer and it’s spread to your liver. Come to my office and we’ll start chemo. Here’s my card.” With a flourish of his white lab coat, he turned on one heel and was gone. I felt helpless. Abraham and I had only married six years ago. Neither of us had married before. I had waited for him all my life. I am not ready to die! Abraham and I have only just begun our life together! I thought. Before I had a chance to get upset, I drifted back into the Morphine haze and fell asleep.
By the time they found the problem and operated, I had come very close to death. Several doctors insisted that I keep taking laxatives, so my intestines were literally about to burst and had compressed the bottoms of my lungs. If they had waited any longer, I would have died.
The operation was serious and I was in ICU on a ventilator for two days following surgery. I don’t remember any of it because I was on some kind of strong drugs. Later, Abraham told me that I used sign language and finger spelling to communicate with him. He interpreted for me to help the ICU nurses adjust the medication and the temperature in their efforts to try to make me more comfortable.
Reality sets in
The worst part of it—worse than finding out I had colon cancer—was having to deal with the colostomy bag. I learned how to care for the stoma and replace the old bag with a new one. I actually did quite well with the whole process in the hospital.
Although I was very glad to get home, I had a rude awakening there the first time I tried to empty the bag. The toilet at the hospital was taller so I didn’t have to lean very far to empty the bag. Our toilet at home was not so tall and—with the huge incision—I still could not lean very far. Since, I couldn’t get close, I splashed caca all over myself. Horrified, I closed the bag but couldn’t move without making the mess worse. In desperation, I cried out for help. Abraham saw the look of humiliation on my face, assessed the situation and said, “I’ll be right back.” He returned with an empty Clorox Wipes canister. He didn’t say a word, just handed it to me…and in handing that canister to me, he gave me back my dignity. Tears streamed down my face as Abraham helped me clean up. From that point, I was able to use the canister to keep the whole process neat.
Although I had been near death, I recovered quickly. In fact, one week later, the surgeon did not recognize me! He was amazed by my recovery saying, “Wow, if I hadn’t operated on you, I wouldn’t know you were sick!” He was the first professional to encourage me to seek a second opinion.
By June, I was strong enough to undergo the procedure to reverse the colostomy. I never thought I would ever be so happy to sit on the toilet to poop! It was truly a wonderful day!
Finally…a ray of hope!
My aunt emailed an article to me about a specialist at M. D. Anderson who was treating people with colon cancer in their livers. His focus was finding ways to make more people candidates for surgery. He’d had great success removing the diseased portions of the liver and allowing the organ to re-grow itself cancer-free. His results were tremendous. Instead of a 100% mortality rate, 40% percent of his patients were living to five years. If they lived to seven years, they were considered cured.
Excited about the surgical prospects, Abraham and I showed this article to the local oncologist. His response underwhelmed us, “I am not familiar with that. I would have to research that.” We looked at each other in disbelief. Wasn’t that his job-!
I needed a referral for an appointment, so I had the local oncologist’s office contact M. D. Anderson. I hoped to be a surgical candidate so I underwent the required diagnostic tests. The CT machine in Houston produced much more detailed images than the one in Fort Worth, revealing multiple lesions. My liver looked like a gumball machine, so I did not fit the surgical profile.
However, the specialist was pleased with the clinical study drugs that I would receive if I proceeded with chemotherapy with in Fort Worth. He said he would work in concert with the doctor at home and instructed me to participate in the study, allow the chemo to shrink and eliminate as many tumors as possible, then return for re-evaluation. He asked to have updates from the other doctor sent to him.
I remember the walk across the sky bridge from the hospital back to the hotel. I had hoped God would deliver me out of this trial. Now, I had to accept the fact that He planned to deliver me through it. The specialist had told me what needed to happen, so I determined it was time to fight for my life. I knew I was not ready to die.
The fight begins
Back in Fort Worth, I began the standard chemo treatments: Oxaliplatin, Avastin, and 5FU/Leucovorin, and really did not have many side effects. In mid-November, I received my ninth treatment of Oxaliplatin…and experienced anaphylaxis for the first time in my life. I had become one of a small percentage of patients who develop an allergy to Oxaliplatin and would have to have a different drug in the future.
I really didn’t like this oncologist. I’d seen him at least once a month from March to August, and twice a month since August. In December he still could not remember that I did not have children! Each time I saw him, he’d ask, “How are your kids-” The first few times, I explained that Abraham and I could not have children. I finally got tired of it and just started saying, “Oh, they’re fine!” He didn’t know the difference anyway. Nor did he seem to care.
It was around this time in December—in talking with the specialist’s nurse—I discovered that, after five months of treatments (and my numerous requests to send updates) the local oncologist had not only NOT forwarded the first piece of paper, he’d never even tried to call! I was furious… and frustrated. I wanted to continue treatment because it would give me the best chance for long-term survival, but not with that uncaring oncologist!
Firing an oncologist
The nurse understood my predicament and sensed my desperation. She told me that an oncologist who was formerly with M. D. Anderson had just moved to our area and was accepting new patients. This oncologist and the specialist knew each other well, having worked together in Houston. She gave me his name and phone number. I called immediately and scheduled an appointment that very week, December 29, 2006.
I was immediately impressed by this new oncologist’s knowledge, and appreciated his attitude of “fighting cancer together.” His prognosis was much more positive giving me more resolve to keep fighting. As I left that appointment, I called the other guy’s office to cancel my chemo appointment that afternoon. I explained to the office manager exactly why I wouldn’t return. She apologized, but of course, she had no influence over the actions of the doctor.
A month later—when I received the cancer center’s newsletter—I discovered how qualified my new doctor was. As a principal investigator for numerous clinical trials at M. D. Anderson, he worked on breakthrough drugs and treatment regimens for many kinds of cancer. He was now the director of the GI center where I now was being treated in Fort Worth.
New treatment…new hope
I began treatment with my new doctor on January 2, 2007. Most of the time, it was pretty rough. I received Camptosar, Avastin and 5FU/Leucovorin. The Camptosar really upset my stomach. I was on that regimen until the first of May. That’s when Abraham drove me to the hospital with a fever of 105.9°. I was so delirious, that I didn’t know I was sick! I told him, “Just give me some Tylenol and I’ll be fine.” He insisted, “No, Honey. We are going to the hospital!” Good thing, too. The port-o-cath in my left chest (used to deliver chemo) had become infected and had to be removed.
I had no chemo until after a new port was placed in my right chest. In July, I resumed the previous chemo regimen, minus the Camptosar. We also tried one dose of Vectibix, which creates an auto-immune response causing the body to treat the cancer as a germ to be killed.
This drug causes a rash, and according to the statistics, the worse the rash is, the better the drug works for the individual. I had a really intense rash. When my doctor saw me, he said, “Well. We can see that the medication works very well for you!” and he chuckled. I had to laugh because I knew he was right! However, the first three months were hell. I didn’t sleep because I could not rest my head on my pillow or even lean back in the recliner. My scalp felt like I was sleeping on a pillow made of needles. The rash itched and hurt and nothing would help. I took Tylenol for the pain, but got little relief. We tried antibiotics, topical creams, Benedryl, but nothing really helped.
We continued the Avastin and the 5FU/Leucovrin. In mid-September, he changed the regimen again. I had only the Avastin infusion, then took Xeloda tablets for two weeks. Xeloda is an oral form of the 5FU/Leucovorin which is actually more effective than the infusion, believe it or not! We repeated this treatment every three weeks.
A major breakthrough
It was during this time that he told Abraham and me that the CT scans showed no tumors anywhere except my liver, and only three tumors showed there. He also stated that the CT scans had been consistent since July and that he wanted to consult with the specialist again to see if he would consider me a surgical candidate now.
I learned that the specialist did consider me a surgical candidate and wanted to see me, so I called for appointments and hotel reservations. I would undergo diagnostic testing December 12 and 13, see the specialist Friday, December 14 with tentative date for surgery Monday, December 17.
The testing went according to schedule and our appointment with specialist and his physician’s assistant went very well. They were both very excited to see me. After introducing Abraham to them, the specialist sat down and began to sketch two drawings of my liver. The first was a sketch of my liver from the first CT scan in Houston in August of 2006. The second was a similar sketch from the scan performed December 13.
The new plan
He pointed at the first diagram and said, “This is before your new oncologist.” He pointed at the second and said, “This is after.”
He explained, “Before you started seeing your new oncologist, there was not much change and you weren’t a surgical candidate. In the right lobe, the tumor was growing around the artery, so I could not remove it. In the lower part of the left lobe, another tumor was growing around that artery. The upper part of the left lobe was filled with numerous tumors and another was growing around a major vein. There was no way to remove all the diseased tissue and be able to leave enough liver to re-grow itself. Now, after working with your new doctor…well, you can see the difference. Only three tumors are still visible and they are no longer around the arteries. There are no tumors visible in the upper part of the left lobe, but in my experience, they are still there. We can do all kinds of scans, but they won’t show up. We know the disease in this area is being controlled by the chemo. The good news is: now, we have options.”
He went on to explain the two options available and the differences between the two. The first —he called the “Gold Standard” of treatment — requires two operations. The second option requires only one operation.
In the first treatment plan, he would remove the diseased portion of the right lobe and block the artery which feeds the left lobe. This would direct all the blood flow to the remnant of the right lobe to accelerate re-growth, which would begin immediately and take only 30 days! One month later, I would return to have the entire left lobe removed. The reason for removing the entire left lobe is because “cherry picking” the tumors one at a time would not get them all. The best way to get them all is to remove the entire left lobe.
The second treatment plan would take only one operation. He would remove the same diseased portion of the right lobe along with only the lower portion of the left lobe and “watch” the upper portion to see if anything developed.
The best chance of the most complete cure is with the first option that requires two operations. He won’t know which procedure he will perform until he actually operates.
My response was quick and confident: “Let’s do it! I’m ready!”
Faith versus fear
The look on his face was one of pleasant surprise. He said, “I am glad to see your attitude because that is a very important factor in your treatment. I have found that people who remain centered and confident do much better than people who panic and get themselves all worked up. While there is always a risk of infection and bleeding with any operation, in my experience, there is little to no bleeding or chance of infection. And—with your attitude—even if you did have a complication, you would press through and be fine. I know you would. People who respond fearfully impede their body’s own healing process. You don’t have that problem.” He was so excited, he shook my hand four times!
Abraham commented, “That confidence is faith. Fear is the opposite of faith. I like to think of it as the difference between fission and fusion. Fission (splitting atoms) produces power and toxic byproducts. Fusion (uniting atoms, fusing them together) produces greater power and no toxic byproducts. Fear releases toxic substances in the body. Faith produces peace and helps the body heal itself.”
The specialist said pensively, “That is a great perspective.”
One for the medical record books!
Then he told us that he and my new oncologist had talked more than 20 times tailoring my treatment for greater efficacy. (That’s exactly 20 times more than the other guy talked to him!) He also told me that I am the first patient to have had stage IV colon cancer who responded well enough to the treatment to undergo this procedure. I will be in the medical record books! This is beyond huge!
Preparing for surgery, we met with the anesthesiologist, followed by an EKG, more blood work and another appointment with the specialist. That’s when he told me I needed to have a complete colonoscopy before having this operation. I had attempted to have one done locally, but could not get an appointment in time because the GI doctor was booked so far ahead. The specialist arranged for me to have it done at M. D. Anderson by another specialist who knows what to look for after a colon resection.
So, instead of having surgery December 19, I enjoyed the many delights of a colonoscopy. I remember being awake enough to watch and ask questions, but I didn’t feel any discomfort.
The operation has been rescheduled for Monday, January 28. I know it will be physically challenging, but I am still looking forward to it!
Your gold nugget
If there is one thing to be gleaned from this article, it would be this: Find the right professionals to help you get what you need. Educate yourself so you can get detailed information from your doctors. If you are not satisfied with their answers, find another one who knows more. I have a fighting chance not only to live, but also to be cancer-free because I found a doctor who was knowledgeable and who wanted to join with me in my fight for life. Everyone needs that, so don’t be afraid to search until you find it!