CHAPTER SEVEN - ONCOLOGIST/DIAGNOSIS/TREATMENT PLAN
A scheduled visit to a new oncologist, whom I'll call Dr. B, awaited me. Dr. B was the head of clinical trials so I was eager and excited to meet him. I knew when he walked into the room that I liked him. He was a gangly 6'4" man with kind blue eyes and premature grey hair. He reminded me of the smart, tall, lanky kid in high school who was a genius, but wouldn't come into his own until college.
As we discussed my situation and options, we soon found out that I was not eligible for any clinical trials. Many clinical trials are quite specific about who is and who is not eligible. There were only a few trials available and I hadn't failed on enough previous drugs to qualify. I would be put on a regimen of Taxateer and Zaloda. I didn't know much about them other than they were like any other chemo drug, but one of them was oral and one was fed through the veins.
Surgery was out as an option as well. Even though the liver regenerates itself, he told us, there were too many tumors throughout the liver to take a portion out. They also do not do liver transplants for people with cancer in the liver. It just doesn’t work.
“How long do I have to live?” I asked. Dr. B
"Most people with stage four liver metastases live for an average of two years," he said. "Some live less, some live longer." Upon hearing this, I started to cry. I’m dying of cancer and I'm embarrassed to cry in front of the doctor. My husband got tears in his eyes as well. He had been with me every step of the way. He loves me so much and is afraid of losing me. I'm afraid of losing me.
Dr. B wanted to start treatment immediately so the rest of the office visit pertained to that. He seemed to be a kind man who would do his best to treat me and keep me alive as long as possible. On the ride home Mike and I were silent. The air felt heavy. But when I noticed rays of sunlight shafting through the spaces in the clouds I felt my heart lift. I envisioned the rays as God's love streaming down to comfort me. I felt my energy level shift to a more positive note as if the sun were pumping me full of warm energy.
When we arrived home my mother-in-law and her friend Chuck were there. We gathered everyone together and gave them the news. Everyone wept. Telling my daughters was painful, mainly because of their reactions. They all hung their heads down low as tears streamed out of their eye and down their cheeks. Each one held their hug a little tighter and longer than usual. Naturally they were upset and scared. I tried to reassure them that I was strong and I would fight this illness with everything I had. I would not go quietly or easy. My strength was comforting to them. I told them how important it would be as a family to live in the moment for no one knows what the future will bring, not even the doctor. Time is wasted wondering about the future when you can be living and enjoying in the present. They agreed with that answer and it seemed to console them just a little.
Some people think children should not be told bad news, but I disagree, kids can handle more than we think. We are open in our house and discuss everything with our kids -- we do however, keep it at their level. Death, unfortunately, is a part of life and my children are well aware of this. They were two, five and seven when my younger brother and brother-in-law died within six months of one another.
They attended the funerals and wakes. My girls were raised with religion so we were all comforted by the fact that their uncles were in heaven with God. We explained that it was their time to go because their work on earth was done.
The rest of the day we talked with my parents, my father-in-law, and other family members. They were sad and frightened, as might be expected, but supportive. The talk was always the same. Tears were shed, encouragement was given, and many prayers were said. None of my own family members live in the same state as we, so they all wanted to come out and help. We’d make arrangements down the road for scattered visits from everyone.
START OF TREATMENT--SUMMER 2003
Treatment started on July 5, 2003. I was nervous. I don’t want to be sick and bald, I thought, but I want to live. Mike accompanied me because it is an all day affair and you are groggy from the drugs when you are done. We left at 8:00 in the morning. The treatment always starts with lab work. Blood is drawn to check all of your white and red blood cell levels. If your counts are too low you can't receive treatment. When we got home it was already 5:00 p.m. One of my wonderful neighbors, made and brought over a beautiful dinner of baked chicken, asparagus, mashed potatoes, gravy and fruit for dessert. It smelled and looked wonderful. Everyone enjoyed the meal. I was the only one who couldn't partake in the feast because I had started the macrobiotic diet. The macrobiotic diet in one that uses organic ingredients grown in your region if possible, and is mostly vegetables, legumes, rice, some fruits no preservatives, and absolutely no sugar, it is supposed to be an easy diet for your body to digest so the rest of the body can concentrate on healing. I had brown rice with lentils and vegetables. It wasn't satisfying, but after the treatment I wasn't very hungry.
The next few days were rough. I felt tired and nauseous. Most of my time was spent in bed sleeping. The symptoms became difficult to deal with right away. Sores appeared in my mouth and my eyes became very watery, it was as if I was constantly crying. My negative side effects progressed until it became difficult to eat and drink.
About a week after my first treatment for the metastasized cancer I developed a fever. I remember sitting with my good friend Cindy, watching the Food Network trying desperately to eat some oatmeal. It took me an hour to eat because of the sores in my mouth. When we finished lunch I got the chills. Cindy left so I could lie down, but I didn’t get any better and, when I took my temperature, found that I had a fever of 101.
If an individual develops a fever while on chemo it requires a trip to the hospital. During chemo, the immune system is suppressed and one can easily develop complications. Mike immediately took me to the emergency room after I called him at work and told him to come home.
The emergency room physicians were unable to get my fever down and couldn’t find the source so they admitted me. After spending several hours in the emergency room I finally had a room. My first roommate was a quite sick, she was in constant need of nurses. She had to have help with everything from eating to going to the bathroom. She also moaned and groaned and complained constantly. It was depressing to be in the same room with her.
The only thing I could eat was pudding. My mouth sores were so painful that it was difficult to eat and swallow. The nurses were overwhelmed by my roommate's needs so it was hard to get their attention. The night seemed to last forever for me, my roommate and the nurses.
As day broke, the powers that be came in and told me they were moving me, I wasn't on the floor I needed to be on. Skipidi do dah, something to be excited about! It's the little things in life that keep you going. My new room and roommate were much better. She was also dealing with a late stage cancer which had spread to many vital organs, her condition was much worse mine. Her longest stay in the hospital was three months, but she had a good attitude. I found myself feeling lucky, and praying for her at every turn. You can always look around and see people less fortunate than you no matter what your plight. Look at those situations and feel gratitude for your own. When we were alone I asked her what her name was and I introduced myself. I suppose I'm nosy so I wanted to know what her illness was and how she was doing. She and I swapped stories and gave each other encouragement.
My fever continued to spike. Each time a fever spikes they have to draw blood but they can’t draw it from the IV because it isn't a pure enough specimen, IV's generally have something in them like saline solution or medications which would make lab results unclear. Unfortunately, my veins were not cooperating so it was difficult for the technicians to draw blood. Every time they failed they had to go to another spot and try again, ouch is all I can say about that. My solution to this problem was to picture Jesus standing over both of us so the procedure would go well and that really helped me. I have so much faith in the power of positive thinking. If you believe things will work out they usually do, and when they don't, it just wasn't meant to be. I feel satisfied believing and living that philosophy.
To make matters worse, my hair started falling out. Disgusting clumps of hair were left all over my pillow. My nurse was kind enough to get a male nurse from another floor that had a razor. He was quite funny and made jokes, he loved how perfect my bald head was, he asked if he could rub the cherub Buddha head for good luck. He made me laugh. I felt much better. It was better to be bald than shedding.
On my fourth day in the hospital, my veins were getting harder and harder to get a needle into, so the doctor suggested putting in a port, a device that is surgically implanted to make gaining access to the vein easier. However, each time they attempted to take me down for the procedure my fever spiked, so getting a port would have to wait. Mike and the girls were regular visitors, and, as one might suspect, the girls were frightened. They wanted me to come home. I assured them that I was only sick from the medicine, not the cancer. I’m not sure they believed me because I looked and felt like shit.
Advice
Find the right Dr. for you, this may take time but it is worth it. You have to feel comfortable with the person treating you and you need to have faith in them.
Be as open and honest with your friends as you can in regard to your health and treatment, it's easier to have it all in the open.
Let your good friends or family emotionally in so they can help you. You will need their support. If they offer to make a meal, let them, it will take a small burden away from you.
Shave your head before it all starts to fall out. When hair falls out in stages you feel much sicker emotionally.
Know that there are others out there that have it worse than you. Be grateful for all the little things.
Use the power of positive thinking. It will turn your life around.
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