Expecting a column on transportation here in February, you may have been slightly startled by this week's column title. This is the way cancer strikes, you are going along, minding your own business, planning what you'll do next and cancer rears its ugly head.
Wikipedia describes cancer as "a group of diseases involving abnormal cell growth with the potential to invade or spread to other parts of the body. These contrast with benign tumors, which do not spread." All cancers are not tumorous. Lymphomas and leukemias are called "soft tissue" cancers because they do not form tumors.
On Friday, February 11, 2000, twenty years ago, I received a call about 4 pm from a person whose name I do not remember, on staff at Emory University Hospital here in Atlanta, Georgia. He told me the results of the biopsy on the lump on my neck had come back and I had cancer, Diffuse Large B Cell Non-Hodgkin's Lymphoma. We had been watching the lump on my neck since December and it had been biopsied earlier that week.
First rule: even Doctors do not want to admit you have cancer.
That evening, Laura and I were going to a Valentine's Day event at the Atlanta Zoo. They were doing these clever parties at Valentine's Day to reveal the amorous activities of their various zoo residents. We went and I don't remember a thing that happened there--I was focused on my new status as a cancer patient--all kinds of things were racing through my mind. For instance, our oldest daughter was to be married that spring--would I live long enough to attend the wedding?
The next week, we (Laura and I, she has been close by my side for this entire journey) met Dr. Elliott Winton at Emory University Hospital. One of our first questions was, "Are we at the right place?" We wanted to know if Emory was the best option or should we head to Hutchinson Institute in Seattle, MD Anderson in Houston, or perhaps Sloan Kettering in New York. With discussions, we determined we were at the right place and high-quality treatment was fortunately available about an hour from our home. We learned about the disease (they told us there were about 15 types of NHL) and set a course of treatment.
I had 5 rounds of chemotherapy (one every three weeks) as an out-patient followed by 29 days of radiation on the lump on my neck, the lymph node where the cancer had first expressed itself. My daughter got married in May and I walked her down the aisle without a hair on my body. Some chemo's are designed to kill fast growing cells indiscriminately, hence one loses every hair and their fingernails stop growing. To be clear, the radiation only lasts a few seconds, but you must drive to the hospital every day to get it. We joked that the drive across Atlanta was likely more dangerous than the radiation.
I was put on a three-month checkup schedule which eventually stretched to six months, then to a year.
Life got back to normal eventually. In 2005, I achieved a long-term dream of mine to solo drive the 48 contiguous United States in 7 days (April 29 - May 5, 2005).
In the fall of 2006, I was feeling tired much of the time. In October, I developed an abscessed tooth and went to the dentist. He sent me to a dental surgeon. After his work, we watched the tooth for a while, but the problem kept growing. The dental surgeon referred me to another dental surgeon. His analysis--I had cancer in the base of the tooth. Back to Dr. Winton.
This time the diagnosis was Burkitt's Lymphoma. Burkitt's Lymphoma was showing up in people my age, people who had been teenagers in the sixties, grown up on farms, drank farm well water, handled synthetic fertilizer and had handled tobacco plants. I was guilty on all counts. It was Stage 4. However, at least in Lymphomas, Stage 4 only means they have detected cancer cells on both sides of your diaphragm.
It was determined I should be hospitalized for chemotherapy treatment on a schedule of about two weeks in the hospital, one-week home. This was with the caveat that if my temperature at home ever surpassed 101.5F, I was to immediately come to the hospital and be readmitted. I went into the hospital Thanksgiving Week, 2006. From that week until April 2007, I spent every holiday in the hospital. They would try to send me home (such as for Christmas) but my temperature would spike and back in I would go.
Doctor Winton told me there had been tremendous progress since my 2000 incident. Now, instead of 15 types of lymphoma, researchers had determined there were at least 150 types. The new drug, rituximab, was available, too. It works by getting inside of cancerous cells and exploding them.
It was a very dark winter for me. I hate winters anyway and being in the hospital did not help. On top of the cancer wing was the helipad and helicopters came and went all hours of the day and night--not restful. I had two pumps on a pole with usually six to eight bags of chemicals (and often blood transfusions) at a time being pumped into the port in my chest twenty-four hours a day. My good friend, Phil Harris, whom some of you know, was talking to me one day on the phone and asked me what the thump-thump noise was in the background. I told him it was the pumps. Next thing I know, he had sent me a set of noise cancelling headphones.
In the fall, when this started, Laura's mother had some health issues. It became necessary to bring her to Emory from Valdosta, Georgia and then move her to Tell City, Indiana where she would be near more family. This was all accomplished before January 1, 2007 while I was in the hospital.
In February, I developed a blood clot in my arm. This necessitated strapping my arm to a board and inserting a long device that was water cooled and vibrated about 2,000 times per second. After that, I had to learn to give myself shots containing a blood thinner in my legs. This went on for about six weeks.
The nurses called the pumps I mentioned "Fred." One day when Laura was there (by the way, she stayed and slept in the chair nearly every night) I asked the nurses why they called the pumps "Fred." They were not sure where it came from. I told them I knew. Once when I was in a paper mill in Finland a bunch of control engineers were fiddling with a similar pump that was feeding a chemical into the approach flow piping on a paper machine. They called that pump "Fred." I asked them why they called it by that name. In perfect English they said, "F---ing Ridiculous Electronic Device ." The next thing we knew, all the nurses were out in the hall whispering about the pumps.
I have always been a person of faith, and I prayed a lot that winter (and have ever since). One of the rare evenings when I was alone, I got to searching on the Internet for the life expectancy of someone like me. It made me very depressed. But I had a small revelation. Those life expectancy curves were made up of many points. I was just one of those points, I was not the whole curve. By myself, I was not a statistic, I was me. I resolved never to be a statistic again and I haven't, I am uniquely me.
In April, it looked like I might live. Laura asked me if there was anything I wanted. I said yes. I wanted a motorcycle and a dog. I had a friend who had a motorcycle, which he soon sold me. As for a dog, I wanted a Cocker/Terrier mix like the first dog I ever had when I was six. I started looking at the animal shelter page for our county. They named the dogs that were up for adoption. In a couple of days, a Cocker/Terrier mix showed up and they had named him Fred! Laura said, "Well, it's a sign, you must go get "Fred." If you have read me for any length of time, you know Fred and I had quite an adventure driving around to paper mills for many years. Fred succumbed to heart failure in the spring of 2018. His ashes are in a cedar box on the mantle in our family room.
I went back to three month, then six-month checkups. Finally, my checkups were stretched out to one year again.
In late January of 2017, Fred and I went to a client's mill in Texas, with the plan being to go from there to Golden, Colorado for my oldest grandson's birthday on February 4th. We were there for the weekend and then planned on driving back to Atlanta on Monday and Tuesday. Sunday night I was having some stomach pains and told my daughter on Monday morning about them. Didn't think too much about them. It takes two days to drive from Golden, Colorado to Atlanta, requiring an overnight stay west of St. Louis, Missouri. The trip went OK, but I stomach pains never went away; the night on the road was particularly bad. I was soon having night sweats, achiness and just plain feeling weird.
It was time to go see Dr. Winton again. He took a look at me, ran some blood work and said he wanted me to get a PET Scan. One was scheduled about 5 days out while we were there in his office (since I have started down this journey, they have built the Winship Cancer Center on campus and all exams are done there). Dr. Winton, obviously a doctor with some clout, started calling around and found he could get me in the Emory Midtown Hospital to a PET Scan machine that afternoon. So, Laura and I headed to midtown. I had the scan and they told me not to leave, to wait for a few minutes. Dr. Winton's great assistant, Jessica Neeley came on the phone, "We just looked at the PET Scan results, don't go home, come back here and we are going to admit you."
This time, the NHL was in my groin and belly and was growing rapidly. I was started on chemo that night, a Friday night if I remember correctly.
A course of treatment was discussed with me and it was decided I would go through chemo and then have, if possible an autologous stem cell transplant. "Autologous" means they harvest your own stem cells and then hit you with massive doses of chemo, essentially killing you before returning your own stem cells to you.
Dr. Winton had to release me to the care of the Bone Marrow Transplant (BMT) department. Makes no difference that Dr. Winton had done the first bone marrow transplant in Georgia, back in the seventies, but the hospital had grown and there was now a specialized department that took over my care. Dr. Winton looked in but was basically silent.
Dr. Winton knows my case very well, of course. He also knew the procedures used in the BMT department. He was worried from the beginning that they would try to push my body too fast to produce the necessary stem cells for an autologous transplant (an autologous transplant is much preferred; one from another donor has the same rejection possibilities that any donor organ has and dictates you be on anti-rejection drugs the rest of your life).
So, I went through various rounds of chemo, targeting donating my own stem cells in early April. I needed at least 2 million of my own cells in order for this to work. To harvest your cells these days, they have a three-line port in your chest. They hook you up to a machine that is essentially a centrifuge and they spin your blood, harvesting the stem cells which have their own specific gravity, returning the rest of your blood to you. So, one line pulls out your blood, one line returns your blood to you and the third line returns those cells that were in the boundary layer, a mixture of densities.
They tried in early April for two days and failed to harvest any cells. Dr. Winton told me, "I told you so--you make new cells slowly." They sent me home for a few weeks to rest and make my own cells.
Some people can pop out 2 million cells in one day (at the time, these harvesting sessions ran about $25,000 each). On the second try, first day, I think I got about 150,000 cells. The second day, I got about 300,000 cells. Now, during this time, there was a retired nurse, Ann, who had worked at Emory for Dr. Winton who went to our church. She wanted to know how things were going every day.
So, the routine was I had to go the harvesting center about 7 am every day. This would be over about noon. Then I would go to the infusion center and get fluids, blood or whatever else I needed. At about 4 pm, I would get a call telling me what the harvested cell count was for that day and whether I needed to come back the next day. Then I would call the sweet, retired nurse, tell her and we would pray.
Things were not looking good. Because of the cost (and I knew they had some sort of a cost containment agreement with our insurance company) I was worried they would shut me down. I got word that the chief of the BMT department wanted to see me in the infusion center before I went home on Wednesday. I told Laura this is bad; he is going to cut me off. I had her get me a small piece of paper (oh, I wished for graph paper) and I took my results thus far, plotted them and drew a regression line by hand. It was a fairly good job, if I have to say so myself. It showed I would make 2 million cells by Friday.
He came in and we exchanged pleasantries. Before he had a chance to deliver his news I bombarded him with my graph. I don't know if he was really going to cut me off, but I never gave him a chance. He wished me well. Likely the pushiest sales job I have ever done.
Turned out my graph was wrong. We blew through 2 million cells on Thursday. They had me come back on Friday, but I had dropped back down to a measly 150,000. But I had enough.
The next hospital stay was planned, and it started in mid-June with more chemo. They put my cells back in me on the afternoon of June 29, 2017. It was anticlimactic. They took my bags of cells, which had been cryogenically frozen, thawed them in a pan of warm water, and fed them into me as they did everything else. Since I was in isolation in my room, due to danger of infection, only Laura and the staff that attended me was allowed in my room. However, since what I was doing was all they do on that floor, everyone else that works on that floor knew what is going on.
At 5 pm, the floor staff all gathered outside my door and sang "Happy Birthday." Jim 2.0 was here.
All was not over, however, there was still more chemo, the heaviest dose ever, yet to come. I had diarrhea for a week, there in the hospital. Now, I hate hospital gowns. I also have these tubes sticking out of my chest all the time when I am in the hospital. So, sometime in the spring, Laura and one of her friends came up with the idea that a sports bra would work to hold the tubes in place (I was always afraid I would pull them out rolling around at night). This worked fabulously. Around the 4th of July, I was in my room, as usual, and the isolation requirements were reduced. Due to the sun shining in my window, I was in my sports bra and an adult diaper (which did a poor job of containing my other problem) with no sheet or blanket on me. In walks Ann. Of course, as a cancer nurse she had seen everything. As a long-term cancer patient, my modesty had been stripped from me years ago. We have a long and hilarious time of laughter.
Now, why did I tell you all of this?
- To encourage you and your family. Certainly not in all cases, but in some these days you can survive cancer for a long period of time. They tell me the reason the life expectancy curves do not go out this far is they expect you to die of something else by then.
- You can do and go through things you never imagined possible when it is required.
- Attitude is important.
- Faith is important.
- Getting the right medical team is important, no matter where they are. Go to the best team you can find--you don't have a cold. The American Cancer Society can help with travel.
- Don't ignore odd things going on with your body, better to be paranoid than blissfully ignorant.
There are getting to be more and more cases like mine. Courage!