This is a lengthy blog entry. Yet, I feel I owe it to those who have followed my leukemia journey a chance to read some of the details that I didn’t disclose on Facebook, emails, and phone calls. Although this blog post is nine pages in my word processor, I also remember when I was first diagnosed with leukemia. A friend sent me the blog of her sister-in-law who had leukemia. She had a terrible experience and had a nasty time with her bone marrow transplant. It was so bad that I stopped reading it. After that, I had no interest in going to MD Anderson when Dr. Tan suggested it or anywhere else. As long as Dr. Tan could reasonably handle it, I was happy. Yet, with time and things not always going so well, my perspective evolved. I ended up going to MD Anderson. When you “Google” CML Blog, my blog site still comes up. I feel I owe it to those who come behind me with CML to post my experience. It may save them a lot of grief or their life.
Arriving in Houston on Sunday, November 4th for my Monday appointment at the MD Anderson Cancer Center, the trip was about eight hours driving time from Pensacola. On the way, I encountered periods of very heavy rain and drove in heavy traffic most of the way. I was amazed at how heavy the traffic was for a Sunday. Anyway, my Garmin GPS brought me right to the Best Western hotel which is a little over a mile from MD Anderson.
After checking into my hotel and taking my luggage to my room, I headed out to scout the MD Anderson area and to get some supper. Thankfully, the Sunday traffic around MD Anderson was light and I was able to drive past the facility slowly. It was a lot bigger than I expected but the area was still somewhat familiar from having studied the area map which had been sent. I then saw a Taco Bell. I hadn’t eat at one in a long time and decided to give it a try. While eating, I familiarized myself with the map again. Then I drove past MD Anderson again taking note of the various numbered entrances and parking garages. While MD Anderson has multiple sites, I was assigned to the main site where the Leukemia Center is. Knowing that traffic would likely be heavy in the morning, I wanted to have a good idea of what I was doing. After this drive-by, I was confident of where I was going.
Going back to the hotel, I arranged for several alarms. After coming all this way, I didn’t want to miss my Monday morning appointment. No need for the alarms. I didn’t sleep well and got up before the alarm time. After I got showered and dressed, I went downstairs to the complimentary breakfast. I wasn’t that hungry but I ate a little. With my appointment schedule in hand, I headed to the car to go to MD Anderson. My first appointment was scheduled for 9am.
I took advantage of free valet parking that is offered for the first appointment day. I arrived a little after 8am and pulled up to valet parking amidst a flurry of activity and four lanes of cars. After getting my parking stub, I entered the building with lots of other people. There were greeters there who warmly and with smiles welcomed people, gave directions, and answered questions. They told me how to get to Elevator A. After walking down a long hallway with a few turns, I arrived at the elevator and I took it to the eighth floor. As I stepped out of the elevator, again, there were a lot of people. As my previous instructions told me, I turned right and headed into the East Wing of the Leukemia Center. I went to the long counter which had several ladies working there. After telling her my name, she gave me a wrist band and had me take a seat in the large waiting room. It was about 8:20 am. About ten minutes later a lady came from down the hall and called my name. I knew from my schedule that this was for the registration process.
The first item of business was to produce an ID and then an insurance card. After getting copies, she opened her folder and said she wanted to confirm my insurance coverage. She told me my deductible status and my maximum out of pocket status as well. I’m not sure how many papers and forms we went through, but she was very pleasant and efficient. It was a long process. During this time, I gave my consent to MD Anderson to use any leftover tissues or blood for their research tissue bank. My signature for that had to be witnessed by two people. The registration worker also directly directed me through my patient rights and treatment consent forms. Finally, she gave me a business card for the person to call if I have financial questions. Glancing down at one of the forms, I noticed they had done a credit report on me!!
After registration, I counted 34 other patients waiting when I went back out to the Leukemia Center waiting room. Moreover, I noticed the various outward degrees of sickness of the patients. Some were wearing masks, some had bandanas on to cover their head from where their hair that had fallen out, and others were in wheelchairs and had walkers. A good number of them were pale-looking. Most had one or some family members with them and a good number of people were using smartphones or iPads. Not wanting to get sick or get anyone sick, I sat by the healthiest looking person I could find!! As I sat there looking around, my heart wept for these people and I prayed that I wasn’t about to become one of them anytime soon or at all. People were talking all around the room, and despite what I just described, the mood of the room was rather upbeat. Soon, a cart staffed by volunteers came offering free coffee, tea, and crackers. I got some coffee and after I took a few sips my name was called.
The nurse said she saw me drink some coffee so I needed to put the thermometer under my arm. She then took my other vital signs. My blood pressure was a bit high as it usually is when I am about to be poked, prodded, or stabbed!! The nurse took me on back to a treatment room and began going item by item over the nine page Health Questionnaire that they had emailed me to bring back filled out. She was thorough and detailed. At one point, I was asked if I would give them permission to take an extra tube of blood, and extra “draw” of bone marrow, swab my mouth, and give a spittle sample. The samples would be used for research. I consented. She gave me a vial to fill with spit; it took a little while to fill!!
Afterwards, the nurse handed me off to someone who was wearing a mask. She explained that she had a few sniffles that morning and therefore was required to wear a mask because of immune compromised patients. She took me to the Leukemia Center’s Fast Track Lab. The main lab is on another floor. Each subsequent visit (not new patient visit) with a doctor of the Leukemia Center first requires a blood test. This fast track lab gets the results to the doctor by your appointment time. The lab had its own waiting room but as a new patient I was taken right in. There were many blood drawing stations with phlebotomists sitting in their seats taking blood from one patient after another. When it was my turn, I gave my paperwork to the phlebotomist and watched as she pulled out ten tubes for which to collect my blood. I said, “Do you realize that you pulled out ten tubes for me?” She laughed and acknowledged that she knew. I asked if I’d be able to walk out afterwards. She laughed again and assured me I would be able to.
After the blood draw, I was given directions to the bone marrow aspiration and biopsy department. The lady told me to check in there before heading down for my chest x-rays and then lunch. My bone marrow aspiration and biopsy was scheduled for 2pm. It was about 11:45am. Finding my way to the x-ray department on the 3rd floor using Elevator C, I was called back right away. They seemed to have a technician who just did chest x-rays. After changing into a smock, I waited my turn to be x-rayed. The x-rays were quick and orderly. In no time I was headed to the first floor to the food court.
The food court was quite big yet compact with all kinds of choices of what to eat. I had a deli sandwich and water to drink. All the while, I dreaded my next and last appointment of the day: My 2pm bone marrow aspiration and biopsy. After eating, I walked around a little bit but not too far. I didn’t want to get lost. Finally, I went back up to the bone marrow department at about 1:15pm. This waiting room too was nearly full. I was called back at 1:45pm.
After verifying my name with my wrist band and getting my patient number, the nurse took my blood pressure. Indeed, it was quite high and I was sweating already!! She explained the process to me saying that they would scrub the back part of my hip crest, numb the tissues with Lidocaine, and then breach the bone. She warned me that she couldn’t numb the bone. She would then aspirate bone marrow with several “draws”. Then she would use a different instrument to get a piece of bone for the biopsy. She asked me if I had any questions. I said no. She instructed me to loosen my pants, hike them down a little, and lie face down on the table. She marked the entry sight with a pen and swabbed the hip crest area. Her assistant gave her a surgical pad which she put on me with an open center within she would work. Continuing to explain everything as she went, she started injecting the target area with Lidcaine until it was numb to the needle.
I didn’t tell the nurse the trouble that Dr. Tan had when he did this on me. Dr. Tan is not a small man and he had a hard time getting through my “hard bone.” Dr. Tan labored and labored to break through my bone and when he did, he barely got enough bone marrow to make the slides for pathology. Well, soon after the nurse began, she commented that I had hard bones. I dreaded hearing that. I was sure that I was in for another epic struggle. Through my sweat and marked anxiety, I told her that I had been told that before. I asked if she was going to be able to get it. She said there’d be no problem, just a little challenge. Then she got through the cortex of the bone and into the marrow. She warned me that it was going to hurt while she “drew” out some marrow. She asked if I was ready. I said I was. Indeed it hurt but I’ve had a lot worse. She commented that she had a good flow and warned me each time she made a draw. It seems like she took five draws or so. Then she warned me that it was going to hurt when she came out of the marrow. She warned me again as she inserted another device to get the piece of bone, and I was warned again when she harvested the piece of bone and when she withdrew the instrument.
When it was over, she put a compression bandage on the wound and told me not to get it wet for 48 hours. I commended her on doing a good job and told her all the trouble Dr. Tan had. The nurse reminded me that leukemia is a rare cancer so most oncologists don’t do that many bone marrow aspirations and biopsies. In contrast, their department does 60-70 a day and each nurse does more in a day than most oncologists do in months. She said that it’s possible that they have more refined tools and techniques. I couldn’t argue. It was much less traumatic than my last one even though she did more “draws” and took a piece of bone. Even so, I was very glad when she said she was finished!!
Thankful to be finished, I took the elevator down to the first floor and I turned in my parking stub. The attendant entered the stub into the computer thus summoning someone to get my car. While I waited outside, I watched as car after car dropped cancer patients off and picked them up. In a large hospital or clinic, I’m used to seeing people with all kinds of problems from orthopedic to neurologic. Yet, at MD Anderson Cancer Center, they only treat cancer patients. These hundreds or thousands of people all had a common enemy: Cancer.
The lidocaine began to wear off and my hip was rather sore. It was a bit sorer than I remembered the last one being. Perhaps it’s because they were in the marrow longer and made more draws. Either way, it was uncomfortable trying to sleep but the whole process wasn’t worth all the worry I expended on it the days before the procedure. I’m sure I’ll worry again next time, but I guess it’s better to expect a tough time and it be easier than the other way around. The next day would be my visit with Dr. Elias Jabbour.
I had a 2pm appointment with Dr. Jabbour. However, his nurse called me and asked me if I could come in at 11am. I said I could. I parked in Garage 10 and took the 3rd floor skywalk over to the main MD Anderson Cancer Center. I found Elevator A and took it to the eighth floor: The Leukemia Center. As is their procedure, I went to get my vital signs taken and then I checked in at the leukemia front counter. This time the waiting room had over 40 people in it and I again noticed how sick many of them looked. I sat down but it was unfortunately close to two guys talking about their bone marrow transplant experiences. They were sharing their horrid stories from the effects of the chemo to very painful spinal taps. They talked and talked. Finally, I felt like I had heard all I wanted and so I moved. There were few chairs available and I chose a chair next to a woman whose husband, we’ll call Sam, was wearing a mask. I came to learn that they were accompanied by the parents of either Sam or his wife and a daughter. We first started talking about smartphones and such. Sam then asked me what typed of leukemia I had. I told him CML. He said his started that way but then went acute. After talking awhile, Sam and his wife swapped seats so he was sitting next to me. The whole family was very pleasant. He was a patient of Dr. Jabbour also. Sam’s family told me what a wonderful doctor Dr. Jabbour is and that MD Anderson, and Dr. Jabbour, take an aggressive and proactive approach to cancer/leukemia. They said that that Dr. Jabbour does everything he can to take the advantage away from the cancer. I was assured that I would like him. Sam said that Dr. Jabbour is late with his appointments a lot because he takes the time to answer all questions and thoroughly explain what is going on. Sam joked that his wife and daughter like him because he is so good looking and nice.
Sam and I began talking about his experiences. He was diagnosed as being acute earlier this year and was put in motion for a bone marrow transplant. While a sibling is desirable as a donor, his genetics were so unique that none of his siblings matched. Furthermore, a match wasn’t found in the United States; his donor is from Australia. The man said that he himself was a salesman and used to reading papers upside down. That is how he found out where his donor was from and that he is 24 years old. He said that he was amazed that a 24 year old would make himself available for such donations. I asked what the donor has to go through.
Sam said that there are two main marrow donation techniques. They both require giving the donor medications to increase production of stem cells: The cells which make other cells. After the blood titre is high enough, they do like a blood donation. A needle takes blood out of one arm, goes through a machine, and back into the other arm. The other way is that the patient is put under anesthesia and different bone sites are drilled so as to harvest bone marrow. He said it looks like a transfusion bag afterwards. The family was humbled that the 24 year old Australian went through that for him. Yet, it doesn’t end there.
During the transplant, Sam was in a room with nothing but a plastic commode for a month or so. There was a glass wall that visitors could see him through and there was a phone with which they could talk to each other. He not only had his usual IV ports, but he had chest ports so they could administer drugs through them directly into his system. He did well and was glad when he got to go home. He went into remission rather soon after the transplant.
After a port flushing on one subsequent visit, he started getting severe chills. They turned back around and went back to MD Anderson Hospital. He had contracted an infection through the port. With the port going right into him, there was not much defense against it. It nearly killed him. After finally recovering from the infection, his cancer tests came back positive again. Now MD Anderson is contacting the 24 year old Australian to see if he would be willing to donate to this stranger again who lives across the globe.
Sam asked me about my bone marrow aspiration. I told him about it. He said that he’s had about twelve of them since June and they started using the drill. He said it is a lot better than the usual way. He was about to explain why when they called him back. He had a 10:30 appointment and it was now almost 11:30. In a few minutes, the same nurse who called Sam called a lady, who was very thin and frail looking, back to the treatment area. I didn’t mind waiting one bit; Dr. Jabbour could take whatever time he needed with these patients and the others ahead of me. Around noon, I was called back.
After sitting a while in the treatment room, a Physician’s Assistant (Hillary) came in and introduced herself. She interviewed me and performed a cursory physical. She was alarmed at how tender my stomach area was. She asked if Gleevec was the cause. I confirmed it was. After the physical, I waited until about 1:45 when Dr. Jabbour came in. He was very congenial, spoke with his minimal to moderate Lebanese accent and began asking me questions. As I responded, I could tell he was very pleasant and confident. He reviewed the blood work they had back but said they are waiting on the genetic studies. After confirming that I was from Florida, he asked how long I would be in Houston. I said that I’d be there as long as I needed be. He then picked up the phone in the room and called the lab. After pleasantries with the lab technician who answered the phone, he asked if she could do him a favor. He asked for a rush on my genetic studies. She told him they’d have them late the next day. I agreed to come back to see Dr. Jabbour on Thursday.
Dr. Jabbour explained that my great initial response to Gleevec is critical. He said that it is uncommon to test positive for ten years after going into remission so fast. He said the causes of testing positive were:
1. Patient stopped taking the Gleevec
2. False Positive
3. Developing intolerance (resistance) to Gleevec
He asked if I had been taking my Gleevec. I assured him that I took it every day. Therefore, he said that he will have genetic mutations tested (caused by Gleevec intolerance) in addition to the other genetic tests. There was one big problem at my appointment. Dr. Tan’s office only sent some of my records to them. Half expecting this, as has been my experience with them, I brought copies of my bone scan reports and abdominal CT scans. Surely, they would send my positive cancer test, right? No. I didn’t have it either. I recalled to Dr. Jabbour that the number on the report was 3.119. Well, that would create confusion because we presumed that was my cancer percentage number. As we found out later, it was not. More about that later. Dr. Jabbour asked if I had any questions and asked if I understood everything so far. I said I did. So, I left the office. I contacted Eileen and that evening she faxed me a copy of my positive test.
This was on Tuesday afternoon and I would be spending Wednesday in Houston before my appointment with Dr. Jabbour on Thursday. I still couldn’t take a shower on Wednesday because of my bone aspiration wound so I washed my hair again under the faucet of the tub and took a washcloth type bath…in case you were wondering. After breakfast, I decided to walk to MD Anderson to get my appointment time. I had checked online the night before but it wasn’t posted yet. I should have checked in the morning before I left, but I wanted to get out and walk anyway. It took me almost twenty minutes to walk there. Once there, I checked my appointment time and saw it was for 1pm Thursday. I then went to the gift shop and got a few items and then sat down at a long table they have in the lobby with a four-bang electrical outlet at each station. I guess there were twelve stations. I sat down and began typing some emails, and writing in my journal. I also toured the Patient and Family facility where they have quiet areas, lounge areas, and a business area. Later that morning I came back and used the business area. I also went to the large atrium on the second floor and wrote more. After finishing, I walked back to the hotel.
On Thursday, I took some things to the car and started to walk to the breakfast room. My phone rang. It was Dr. Jabbour’s nurse. She wanted to know if I could come in at 11:30am instead of 1pm. I said I could. After eating breakfast, I packed the car, checked out of my room and headed to MD Anderson. I was quite early so I sat in the lobby with a cup of coffee and again wrote emails and wrote in my journal. I then went up to the eighth floor, got my vital signs taken, and checked in at the front counter. At about 11:20am I was called back to a treatment room.
At 11:30, Hillary, the Physician’s Assistant, came in and told me there was a lab error and all my genetic tests weren’t back. They were being rerun and the earliest they would be done is late Friday or Monday. She asked if I wanted to stay in Houston, come back, or have a telephone appointment with Dr. Jabbour next Tuesday. I said I’d think about it for a few moments. I then gave her the copy of my positive cancer test. She said she’d show it to Dr. Jabbour. In about ten minutes, Hillary and Dr. Jabbour entered the room. He smiled and said that I was doing very well with my CML despite my positive cancer test. He said the 3.119 was my log reduction number not my cancer cell percentage. Dr. Jabbour said that I can lead a very normal life at the cancer level of .136%.
He said it is barely positive, but it is positive. He was concerned why it became positive after being in remission for so long. If it stayed forever at that .136% level, it would clinically be like being in remission. However, he’s concerned that this might be the early stages of Gleevec resistance/intolerance. He’ll know more when he gets the genetic tests back. He said he would call me next Thursday to tell me the results.
Dr. Jabbour then pulled a chair over to his exam table and began writing on the paper covering the table. He explained the log factor, my cancer percentage results, Gleevec drug intolerance, gene mutation, and CML in general. He wrote down the drugs available to Dr. Tan to treat my CML. He wrote down imatinib (Gleevec), nilotinib (Tasigna), and dasatinib (Spycel). He said that with my genetic makeup that I was likely to produce a mutation what I believe was called T315i if I failed Gleevec and went on one of these other chemo drugs. If that happens, that would be VERY bad for me. Therefore, even if the current tests come back good, he wants to monitor my genetic tendency toward this genetic mutation. If I start failing Gleevec, he wants to catch it early in the process and get me onto a chemo (he named it) that isn’t on the market yet. Therefore, if my genetic tests come back with elevated numbers or mutations, I’m to come back in two weeks. That will be the following week after next Thursday’s phone call. If I’m not showing significant signs of Gleevec failure, then he wants to check it again in a year.
There is something very important here. When talking to Dr. Tan, he said that if I am failing Gleevec that he would either put me on Tasigna or send me to MD Anderson. Put me on Tasigna? That is exactly what Dr. Jabbour said must not happen. So, regardless of anything else, that piece of information was worth the trip. Also, Dr. Jabbour said that he was glad that MD Anderson now has a genetic profile on me from which to monitor in case I am developing Gleevec intolerance.
It seems that things are going well with my care with Dr. Tan. I wish his office staff was a little more careful and diligent. I also wish that I did not have that appointment with his nurse practitioner. She obviously gave me bogus information which two phone calls and emails with Dr. Tan didn’t get cleared up. When I did speak to Dr. Tan, he didn’t have my file in front of him so he didn’t have a grasp of my numbers. I wish that he would have looked them up when he went back to his office, and called me. There has been a lot of worry alleviated by my trip to MD Anderson.
My trip to MD Anderson was a great experience. It was great to be treated by a world class facility and by world class people striving to get it right with a smile and a helping hand. I’ve been in a lot of medical facilities in my life; MD Anderson is by far the best of them all. There is an obvious concerted effort to be friendly, helpful, polite, and the best in patient care.
When I was reading the prayer notes on the prayer tree in the chapel, one girl wrote that she wanted to be so negative. I thought, “Why be negative? One needs a positive outlook to deal with all of this.” Then I read more notes. Then I understood; she wanted the same thing we all wanted…to have our tests come back “so negative!!”
Eileen didn’t travel with me this time because we didn’t want to use her personal days just for my testing if we might need them later, if this thing was in the process of turning really ugly. One of my tests, that I brought a copy back with me, shows that I have not progressed to the next phase (Accelerated) or the worst phase (Blast). If I had been, things would look very bleak and we would need all those personal days.
Finally, I want to say that I was moved by seeing all the suffering cancer patients. Seeing so much of it was like visiting a mini war zone. Gazing upon such human suffering does something to a person. It softens some aspects of one's psyche and hardens other parts. I hope it did the right combination in me. I will remember the looks on so many faces as I pray for their struggle to live another day, week, month, or year.
Thank you for remembering my family and me in your thoughts and prayers. I appreciate the emails, texts, phone calls, and Facebook comments and affirmations.