OOPS, What Was That Diagnosis? MD Anderson Visit

I forgot to mention yesterday, that after my preliminary diagnosis, I was scheduled to go to Arlington, Texas to conduct a four-day training. My boss was willing to substitute another trainer in my place, but I felt like I needed to do something “normal.” Besides, I was just waiting for my insurance company to approve the CT scan and BMB appointments and then waiting to make those appointments. I am glad I went because, at least for a few hours a day I could think about something other than the Leukemia. While up at the regional state health department in Arlington where I was conducting the training, Ron Stinson, a local employee, gave me the book “Tuesdays with Morrie: An Old Man, a Young Man, and Life's Greatest Lesson” by Mitch Albom. Wow, did I need that! What an inspirational read and one of the many things over these last months that have inspired me and helped me not to feel sorry for myself. I read it in one night back in my hotel room. An interesting side note – I was conducting a technical assistance visit in a different location in Arlington just two weeks ago and I met a lady who had given that book to Ron. When Ron found out I was going to be there, he told her about me. She told me she wasn’t even sure why she had given it to him. I know! God works in wondrous ways and He knew when I needed to read that book.

Well, to continue my story. After my “official” diagnosis, I just needed to wait for my second-opinion appointment at MD Anderson in Houston. Every little pain, twinge, tickle, and imagined movement inside my body was analyzed by me wondering if it had something to do with the “Big C.” I found myself losing my voice off and on and also trembling quite often. I called over to the oncology clinic about the voice loss and they told me to contact my primary care physician. He thought it was from swollen lymph nodes in my neck, but made a referral to an ear-nose-throat specialist to make sure nothing was going on with the vocal chords. Now I was waiting for that approval and appointment, too. I also had an upcoming appointment with the endocrinologist who had originally found something wrong in the blood. Wow, from seeing only my primary care doctor every six months to all these specialists! Overwhelming.

My boss kindly decided not to send me out on the road to do any more trainings for the time being. I had too many appointments coming up and we didn’t know when the MD Anderson appointment would come through. He substituted other trainers into my scheduled slots. I can’t say enough about all the support and understanding all my co-workers and supervisors give to me.

I went to the endocrinologist, Dr. Simona Scumpia, on May 12th. She did a carotid artery test (sonogram) because of the transient ischemic attack (TIA) or mini-stroke I had 5 years ago. The test showed I had quite a bit of blockage on the right side of my neck and very little on the left side. It is not bad enough for surgery yet but bad enough where she was concerned. She is going to be looking at it every three months for awhile. If it gets too blocked it can cause me to pass out or even have a stroke. Sigh. She did some kind of special type of blood test since my triglycerides have been great for almost a year (from over 500 down to 85 currently) and my cholesterol had been under great control for a couple of years (other than the ‘good’ cholesterol was still a little low), so she thought the artery should not be blocked that much now. Remember that train heading down the track? It seemed to be picking up speed.

Then I went over to the hematologist/oncologist to find out why I had heard nothing from MD Anderson. While I was there, the Dr's nurse called down to Houston (instead of faxing like she did the last time I inquired) to find out why we had heard nothing and the lady there claimed they didn't have any of my paperwork even though there had been a confirmation three weeks ago that they got it. Anyway, she got the name of the person there and sent the stuff directly to her. They promised to get a quick response that time and said I should hear the middle of the next week.
It was time to see the hematologist/oncologist again the next Wednesday, on May 18th. When we made that appointment, it was with the assumption I would have been down and back from Houston. On the morning of May 17th, I got the call from Houston. I had the choice of an appointment in mid June or take one for the next Monday, May 23rd. Of course I took the one for the next week. I called Dr. Netaji’s office to see if I should cancel with him the next day. He wanted to see me anyway.

I’m glad I went. I got some good news there. When I started asking him about the mylodyspastic syndrome (MDS) diagnosis and how he planned to handle that, he said I didn’t have MDS. I told him about the paper it was on. OOPS! Well, it seems that the diagnosis of MDS added to the CLL (Leukemia) was a "clerical error," at least the MDS part. I was very concerned because that is not a nice combination to have. Apparently in the "diagnosis" area of the paperwork that I had, some clerk had added the MDS when it wasn't supposed to be there. The doctor was very apologetic and I was very relieved. Also some further test results were back that showed that I do not have the 13q deletion (chromosomal abnormality) which would indicate a poorer prognosis if I had it. About time a doctor gave me good news! I could feel prayers being answered.

Sunday afternoon Cheryl and I headed for Houston. It was to be a three-day appointment and I needed to be there early Monday morning. What a sobering experience it is being at that hospital and in the clinics when you realize that all they do is treat various forms of cancer. So everyone you see is either a cancer patient or a caregiver or loved one of a cancer patient. The adult leukemia clinic waiting room was full to almost overflowing with about 100 people in all stages of all kinds of leukemia. That being said, they are very efficient and at the same time very kind and caring. Because I was a new patient, every time we had to go somewhere different, some one took us. There were about five of us that signed in as new patients that day. First we turned in the eight page medical history questionnaire that we filled out, were given an ID card and some other information. Then we met with a nurse who went over the medical history and asked even more questions. Then we were taken to the blood lab right there in the Leukemia clinic, where 18 tubes of blood were collected. I counted them several times to be sure! It was a massive operation and they were taking many people's blood at a time and it looked like everyone gave many, many tubes of blood. Initially they test for lots of things including HIV-1, HIV-2 (mostly concentrated in Africa), Hepatitis C and they even did the PSA test for me (prostate indicator) because I didn’t know when I might have had one. Then we were taken to the floor where they do the dreaded bone marrow biopsy. Yes, I had to do it again. A couple of people on my ACOR list told me to ask for a certain technician because he was the very best and very gentle and kind. He even teaches others how to do it. I was also told that with him doing it, it wouldn't hurt at all. If you remember when I had it here in Austin, I was very sedated, remember next to nothing and had NO pain either during or after. Well, I could have requested to be sedated there too, but I was told it would have added two more days to our visit. I decided it was not worth it and I put my trust in the special technician. Besides, most everyone said if you had to have a BMB, MD Anderson is the place to have it done. No pain.

Hmm, of course because I am weird, the local anesthetic wouldn't take. I should have known because I have trouble numbing up at the dentist with certain anesthetics. I was given several shots as he tried and tried to get it as numb as he could. He said he gave me more than he ever had given but just couldn't get it totally numb. Because he kept trying to avoid the nerves and pain, he moved the needle to several places and tried multiple times. Finally I told him to just go for it and he did. OUCH!!! It hurt a lot going in and I felt all of the marrow aspiration right down my leg too. Actually, going through the bone itself doesn't hurt, just getting to the surface layer of the bone and then pulling out the marrow and the bone core. Then after it was all over, my blood pressure was very high and kept bouncing all over the place. No duh! At one point I saw it was 193 over 92. Finally it came down to 152 over something and he let me go. I think he was very glad to see me go! (I have since read that you can’t make a special request for a technician any more. I wonder if I messed that up for everyone.) When I came back to the waiting room, Cheryl had a look of great concern. Before it was my turn we had been watching people go in and come out for over an hour and everyone was in there for 15-20 minutes. I was in there for over an hour. She said that people kept going in and coming back out and I was still there. She said if I hadn’t come out when I did, she was going to go in. I think the day was worse on her than me. At least I got to do things; she spent lots of time waiting for me. She did come in with me whenever I had to speak to someone. Anyway, I was still hurting from it a couple of days later. Next time I ask to be sedated and they can even bring in the sledge hammer and metal spike, I won’t care!

After preliminary tests were run on the blood and bone marrow, we were called back two hours early to the clinic to see Doctor William Wierda, one of the premier CLL specialists. First we saw his nurse and PA who went over previous paperwork that had been sent from my doctor. She also got more details from me about symptoms, history, etc. Then we waited for the doctor to come in. He then went over with us the test results that had come back so far and answered questions for us. He was excellent! The only result that had gotten quite a bit worse was the platelet levels. They had dropped. His recommendation, based on the tests that were back, was NO treatment at that time! The treatment can cause long-term bodily damage and possible mutation to more aggressive forms of leukemia, so they try to wait until it is absolutely necessary. I have a couple of indicators that were close, but not there yet. He recommended doing blood work every five weeks to keep a close eye on it. He outlined all the indicators to watch for that will determine when to possibly do treatment. (NOTE: PLEASE DON’T RELY ON THIS FOR MEDICAL ADVICE FOR YOURSELF) They are: Hemoglobin less than 11 and (or, I think) platelets less than 100,000 (that is where I am very close); Significant fatigue, night sweats, and/or fever without indication of infections; Massively enlarged lymph nodes and/or enlarged spleen (my nodes are all enlarged, but not massive and no enlargement of spleen); Lymphocyte doubling time of less than six months; and one that I don't remember and can't read his writing on. He also recommended a choice of four different treatments (actually all variations of the same basic treatment) and two of the four are research trial treatments. All involved Fludarabine which works well but scares me a little because it can cause major problems. Since I live less than 200 miles from Houston, he suggested we go home and come back later for the results of the rest of the bone marrow tests. At that time he said he could give me his definite position of the course we should take. He told me just to go and the scheduling office would call me at home with the appointment. So, my three day appointment turned into a one day appointment. By now it was rush hour in Houston, we already had the room at the hotel, so we decided to spend the night and relax. We left Houston the next morning feeling VERY good.

Before I close for this evening, let me try to explain how I was feeling emotionally. Looking back on that time, over six months ago, I was doing fairly well. I was feeling the support of all the people I knew and I heard from folks I hadn’t heard from for several years. I had many, many people telling me they were praying for me and I could tell that they were. Outwardly I was pretty calm. I really was not feeling any sense of panic. Now, I think that some of the trembling I was having was a nervous reaction without me even realizing it at the time. I was accomplishing nothing at work as I was thinking about it all the time and reading and trying to learn everything I could. I would try to work on a new training course I was developing and my mind would wander off and the next thing I knew I was out on the Internet reading more about Leukemia and trying to figure out my odds. I learned that “average” survival time didn’t mean much as most of the figures were based on old treatments and who is “average?” What I really craved was to be able to look into the future and know what was going to happen and when. Or, at the very least I wanted the ability to just forget about it for awhile. For some reason it was easier to forget about it for periods of time at home during the evenings and on weekends more than when I was at work. Cheryl and my daughters and grandkids were my “normal” base. My concentration level at work was pitiful. From that day in March at the endocrinology appointment when Dr. Scumpia said something was going on with my blood, my life really had changed forever. In April, when I walked out of the preliminary diagnosis appointment with Dr. Netaji, I remember being surprised that everything around me seemed to be going on as normal. Didn’t those folks know I had just been told I had Leukemia? Wasn’t the world supposed to stop, or something? I guess if I had to label that period of time, it would be ‘confusing.’ I wanted to do something with treatment, and yet the more I read, the more I realized it was better to wait as long as possible. That didn’t want to compute in my mind. After all, I had taken a lot of action against diabetes and had it under control, why couldn’t I do that with this dragon? There was the conflict!

Tomorrow, the rest of the test results.