TIMELINE (PART 1 OF 2)

When in school, at least one of our kids had to construct a family timeline. There are all sorts of timelines. There are Biblical ones, historical ones, social ones, and even medical timelines. Timelines can aid in gaining an overall perspective of important events.

We tend to categorize our lives in segments. For an example, we start with infancy, childhood, the teen years, adulthood, middle age, and then end with old age.  Reflecting upon these segments of our lives can help us reconnect with the events, feelings, and emotions (good and bad) which have shaped us into our present spiritual and emotional beings. While dwelling on any one segment of our past for too long can hinder our ability to deal with today’s realities, a transitory focal meditation on our timeline can connect the dots of whom we have become.

The timeline of my leukemia started on April 24, 2009. As a regular donor of platelets, this donation was no different than any other. Other than a chronic arm problem, I had been feeling well except for periodic overwhelming fatigue. On May 1^st, I received a letter from the blood center informing me that my white blood cell count was 84,000. The lab’s normal range was 6,000 - 8000. The letter recommended that I seek medical attention.

I called my M.D. who had me go to the hospital lab for a stat blood test. Later that afternoon, my M.D. called me to tell me that he was referring me to an oncologist. With my background, I wasn’t one bit surprised. Even so, hearing the word “oncologist” about floored me.  As hard as that was, it was even harder to tell Eileen.

Well, that was on a Friday; my oncologist’s appointment was on Monday afternoon. I can tell you that was one long weekend. All kinds of scenarios played in my head during both the night and day. Well, Monday afternoon came and there I sat in an oncologist’s waiting room for the first time in my life. Eileen was with me.  I was nervous and full of anxiety. I even got a bit lightheaded as I scrutinized the cancer-stricken people sharing the waiting room with me, as I tried to stay focused on filling out the paperwork. After a considerable wait, I was called back to a treatment room.

Dr. Tan came into the room. He asked me a bunch of questions and did an examination. He told me that I had leukemia; now it was a matter of determining which variety. That would entail more blood work and a bone marrow biopsy. The blood sample was taken that day while the biopsy was scheduled for the following week. I’d get the results the week after that.  By the way, I’ve had much worse procedures done, but the bone biopsy was no picnic.

In the meantime, it was a matter of two weeks waiting to see if my leukemia was acute or chronic, lymphocytic or myelogenous. I studied them all in great detail and quickly learned that I wanted the chronic variety of whichever species. The acute leukemia would be disastrous. So, for two weeks I prayed for CML, which was the most innocuous one. The matter so occupied the essence of my being that it was hard to do anything, especially sleep, without thinking about it. Then my return appointment with Dr. Tan arrived.

Well, praise God!! Dr. Tan told me that I had Chronic Myelogenous Leukemia (CML). While it was the tamest of the leukemia varieties, it was still a killer. He said that if I responded to chemo (went into remission within the first two years) that I might live ten years. After that we’d have to hope that a new treatment had been developed.  However, due to my white blood cell count, enlarged spleen, and other factors, he advised that I go to MD Anderson Cancer Center in Houston, Texas. He said becoming a part of a clinical trial would be my best chance of going into remission.

Okay, wait a minute. To me, clinical trial means guinea pig. I even clarified that I’d be undergoing experimental treatment protocols. Dr. Tan confirmed that was the case. I told him that he came highly recommended and I’d rather live my remaining days under his care than be treated as a lab rat. He acquiesced and ordered me a prescription of the oral chemotherapeutic, Gleevec, and a couple of anti-nausea drugs.

It seems I read everything there was on the internet about Gleevec. The potential side effects were scary and I bemoaned the thought of putting that chemical concoction into my body. After staring at my first dose for quite a while, I finally relented. Unfortunately, I had a real hard time with the side effects, and my leukemia journey heated up. For whatever reason, I decided to chronicle my journey; I started a blog.

The blog was a great cathartic and mechanism to keep family, friends, other CML patients, and interested parties up to date with what I was going through physically, mentally, and spiritually. There was also great healing in the prayers and feedback I received as a result of blogging every day for the first two years of my leukemia journey.

As time went on, the side effects of the chemo became less dramatic and eventually dwindled down to being just a major nuisance and agitation. It still is a problem but I’ll not complain, as it is soooo much better than before and so much less than what many people experience. I’m especially thankful that the nausea is much less and the vomiting has almost ceased. The leg cramps were especially intense too. Speaking of leg cramps, one of the common side effects of Gleevec is leg cramps. As a very personal item, my leg cramps were so bad that it got quite hard to walk at times. Even so, the cramps were even worse at night. Eileen started massaging my legs and hips, especially before going to bed. It helped a lot. Even now, even though my leg cramps are minimal and infrequent, she still massages my hips and legs nearly every night without exception. She notes I get to sleep much faster and sleep more soundly if she massages me. So, nearly five years later she still does it: a true laborer of love. I don’t know how many spouses would do that for so long, but I’m thankful Eileen’s love for me inspires her to do so.

I’ll post Part 2 tomorrow.

Mostly Though...

While life goes on, it seems that a part of me is in a holding pattern...waiting for the results from my oncologist. There is so much riding on these results and I so much appreciate the expressions of prayers, love, and support I've received from you via Facebook and emails. I sincerely appreciate it! If there is one thing I've learned in life it is that some things can only be handled, managed, or resolved through prayer. Which reminds me...

I often have morning coffee at a Whataburger restaurant. One of the regulars is Mr. Huff. He is a spry 92 y.o. WW II veteran who is a pleasure with which to converse. He's had his share of adversity beginning with war injuries, strokes, cancer, multiple episodes of pneumonia, currently having his wife in a nursing home, and burying two of his children. Yet, his perspective on life is amazing and he has a tremendous inner resolve. He drives to Whataburger and is very active in his church. In fact, he obtains the speakers for the men's monthly breakfast. Among his few limitations is that he doesn't drive at night.

So, several months ago I started driving him to his church's weekly evening prayer meetings. His denomination is Baptist which is not my own. In addition to attending the prayer meetings with Mr. Huff, I've been his guest at several other church functions. The church has welcomed me with open arms. The pastor is especially amazing as he always makes a point to speak to me and make me feel welcome, although he knows I'm just there because of Mr. Huff. At Mr. Huff's request, I am included on their printed prayer list and I'm included in the Wednesday evening prayer intentions.

Well, a couple of weeks ago is when I had the angiogram for my arm. So, guess who showed up in my little curtained cubicle to bless and pray for me? It was the pastor of that church! To me that is amazing because not only am I not a member of his church but he knows it's very unlikely that I ever will be. Anyway, the next prayer meeting is in a couple of days and I know that Mr. Huff will announce that my test results are due on Friday. The church will join with your prayers to accomplish what only prayer can do.

Of course I pray for full remission of my leukemia. If not that, I pray that my active status remains at a low aggression level. Mostly though, I pray for the grace to accept and make the best of whatever the outcome may be, for my family and me.

STATUS UPDATE

One bad thing about having written a daily blog for over two years is that I became weary of the daily focus on my health. Despite the daily battle, I think it is important in any chronic health matter to keep the focus on what is good. To me, it’s sort of like, “… whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things” (Philippians 4:8). Obviously though, it is easier to stay focused on the good things when the battle is going well. When the battle isn’t going so well, it can draw even the deepest parts of the soul into the moment-by-moment struggle. It has been about six months since I posted anything on the blog. Today my purpose is to give an update and to seek your continued prayers.

To briefly summarize my last post, in August 2013, I had gone to MD Anderson Cancer Center in Houston, Texas. Thankfully, my cancer showed to be in remission. I then made my return appointment in a year. In the meantime, I would continue to be monitored and treated locally at the Woodlands Medical Specialists by Dr. Tan.

My following appointment with Dr. Tan was November 18th to have my blood drawn. In a little over two weeks later I would see him for the results. In case you are wondering, it takes at least a week to get back the genetic test results. So, that appointment was December 6th, which happened to be my birthday. I was in great spirits and took great comfort in having tested negative in August. I also took great comfort that Dr. Jabbour (world renown leukemia specialist) at M.D. Anderson told Eileen and me that there was a nearly 100% chance that my cancer would not have gone active when it did. The fact that it did was not good and the fact that my cancer stayed active for nearly a year was also not good. However, the impression was that we could rejoice that my cancer had gone back into remission; it would likely stay there for many years. So, rejoice and thank God is exactly what we did.

Meanwhile, I sat in Dr. Tan’s waiting room looking at the poor suffering souls whose cancer was obviously not in remission. Any one of them would gladly and quickly exchange places with me. I even felt a bit out of place. I was observing this suffering mass of humanity while personally rejoicing to be in remission with only my relatively annoying side effects from the daily chemo to contend with. I prayed for them and thanked God that I was in remission.

Soon, the nurse called me back. She took my vital signs and led me to the treatment room. I heard Dr. Tan speaking to someone as I also heard the file being removed from the holder outside my door. I stood up with a big smile as Dr. Tan entered the room. His return smile was minimal. My heart sank. Indeed, he informed me that my cancer was back active again. I’m not sure what else transpired during that visit. Oh, I remember the main things Dr. Tan said but the overall visit is a blur. I was in shock. After leaving the treatment room, I went and sat in the waiting room again. I wasn’t ready to get behind the wheel and drive. I looked at my appointment card and recalled that Dr. Tan said he wanted to recheck me in February. If my numbers went higher, he would send me back to M.D. Anderson for bone biopsies and further workup. I don’t know how long I sat there until I left. I had previously planned on sending a joyous email informing my awaiting family, at their various locations, of my good report. Not now, there wouldn’t be an email of any sort until I got my mind around my new status. I left the Woodlands feeling not only very disappointed but also quite bewildered and waylaid. My presupposed impressions of living a normal lifespan had seemingly come crashing down. I was back under the gun.

I drove to a coffee shop that was on the way home and began crafting my email. It took me a long time to write it. I knew that Eileen and the kids were awaiting my supposed good news but the words were very hard to write. I fielded several “happy birthday” calls in the midst of writing; thankfully there were no questions about my doctor’s visit. I finally finished the email and sent it off to my awaiting family.

Perhaps I took my status of being in remission for granted and took too much comfort in Dr. Jabbour’s assurances (MD Anderson). Maybe that is why this new test result hit me so hard. Despite the Christmas season and having the whole family around, I couldn’t shake the day and night grip this had on my soul. Countless times, I recalled how much better off I was than all those people in Dr. Tan’s waiting room. Not only them, but also I thought of the millions of suffering people around the globe who would readily exchange places with me. I thanked God numerous times that while my cancer was active, it was a low active status and not in an overtly aggressive state. Even so, I couldn’t shake it… until recently.

Earlier this month (February 14th), I went back to Dr. Tan’s office to have my blood drawn. I get the results this Friday the 28th. I humbly seek your prayers not only for a good result but also for the grace to accept whatever the result may be. In addition, I humbly seek your prayers for especially Eileen and the kids who battle this with me, along with other cancer patients and families all over the world. I resolve to update my blog after my appointment with Dr. Tan on Friday, regardless of the results.

As with my other health challenge, my right arm, how has it been going? Well, it could be better too. For those familiar with the neurovascular condition called Reflex Sympathetic Dystrophy, the fact that it has been a very cold winter says a lot. While my arm has been doing better in recent years thanks to prayers and a plethora of treatments and procedures, this winter gave me a stark reminder of the days that moved us to the south. As if that wasn’t enough, I developed another arm issue.

The radial artery in my right arm (near the wrist) came to the surface and gave me a lot of sharp pain, and the pain became more diffuse. I got it checked out and was referred to a hand surgeon at Andrew’s Institute. After undergoing an arteriogram to rule out an aneurism, it was determined that my artery had broken loose from the connective tissue which normally holds it in place. The result is that the artery came to the surface and has created a noticeable visible bulge near my wrist. Due to the way that my tendons were rearranged years ago to give me more hand usage, the transferred tendons pull across that artery each time I close my fingers. Now that this part of the artery has broken loose, I can watch the artery move each time I close my fingers. Well, what to do about it? Other than steroid injections to relieve the pain and irritation, there isn’t much to do. Did I get the steroid injection? Well, as the visual image of that needle going into my very sensitive and atrophied arm flashed before me, I told the doctor that I didn’t want to get it right then. He said to just call when I’m ready. We’ll see how my arm does when I increase my outside activity in the warmer weather. Something tells me I’ll keep my activity just under what would necessitate regular injections!!

So, I’ll write on Friday. Thank you for your prayers.

MD ANDERSON CANCER CENTER

    I recently went back to Houston, Texas to MD Anderson Cancer Center. For those not familiar with MD Anderson, “For the seventh year in a row, and the tenth time in the past 12 years, The University of Texas MD Anderson Cancer Center earned the No. 1 spot in U.S. News & World Report’s annual rankings of the best hospitals for cancer care. Since the survey began in 1990, MD Anderson has been ranked every year as one of the top two hospitals in the nation for cancer care.” Okay, now that I have that out of the way, that is where I’ve been going since my leukemia came out of remission a year ago. I still go to my local oncologist, Dr. Tan, but MD Anderson has taken the lead role with my cancer.

During my cancer journey since 2009, I have received emails and calls from many of you suggesting and forwarding many cancer fighting remedies from things to eat/not eat to grape juice enemas. It seems that just about anything has worked for somebody in the fight against cancer. The one thing that resonated with my medical background was the research showing that cancer cells need sugar to survive. I’ve known this for most of my adult years but I didn’t really focus on it too much until I received many emails regarding cancer and sugar. I began looking at the research and read a couple of books dealing with the subject. Considering that my cancer had unexpectedly come out of remission, and was staying active almost a year later, I felt the urgent need to do something. I decided to follow the recommendations of the research and thus eliminate sugar and flour from my diet.

So, for many months with an eye toward my August 6^th MD Anderson Cancer Center visit and blood tests, I’ve essentially had no sugar or flour products. Yes, that means eliminating bread, pasta and such, and even ketchup. I’ve not even had birthday cake on our children’s birthdays either. I yearned to do what I could to help put this cancer back into remission. I would do my part and let God do His part.

It’s been ten days now since I had my genetic cancer tests in Houston. I was supposed to email the Physician’s Assistant two weeks after the tests to get the results. Genetic tests take a while. Anyway, on day ten, today (at 7:50am), I emailed the physician’s assistant. At 10:20am I checked my email and saw her 9:17am response. The result is that my cancer test is negative for the first time in a year!! That means I’m back in remission. Thank God!!

So, was it the diet or the prayers that put me back into remission? Well, as I mentioned, I think I did my part and the Lord did His part!! I wanted to make sure I posted this sugar connection to my blog for those searching for possible ways to fight their cancer battles. Will I stay with the dietary restrictions now that I’m in remission? Well, it seems that the combination that put my cancer into remission might be what keeps it in remission. So, I don’t think I’ll wander far from it.

I also want to be sure to say that I can’t thank you enough for the prayers that you have offered for me. So many people pray for my family and me. My 91 year old coffee drinking buddy told me just a day before I headed off to MD Anderson Cancer Center that he awoke around 2am feeling the need to pray for my “trip to Houston and a good report.” I’m also on the prayer chain (list) in churches of several denominations. I (we) are blessed!!

My general health is doing well. I still often push myself to do what I feel too fatigued to do and do what my arm tries to stop me from doing, but I think it is far better to keep going than let myself slow down too much and risk getting down. Life’s downward spiral is too rapid the way it is; there’s no since helping it along. Even so, I was in the hospital in May for pneumonia.

Due to my suppressed immunity, Dr. Tan insisted that I get the pneumonia vaccination last year. Well, fortunately as a result, I didn’t have the very nasty pneumococcal infection. I had a regular run of the mill pneumonia that almost killed me because my immunity is so low. Whereas we normally have white blood cells to fight infection, mine are suppressed by Gleevec. Therefore, whereas white blood cell counts usually rise to counter an infection, mine just stayed low as if nothing was happening. Anyway, I got the sickest I’ve ever been. By the time I went to see Dr. Tan, he immediately put me in the hospital for intravenous antibiotics, etc.

Other than that, we are doing well. Our grandson is being baptized tomorrow (Saturday) in Mississippi. We look forward to attending the baptism…I am especially thankful to attend without leukemia active in my body!!

Cancer Update

They had me wondering but Dr. Jabbour’s office finally called me today about 6pm. While my cancer is still active and no longer in remission, my cancer count remains low and my tolerance to Gleevec is good. So, I don’t go back to Dr. Jabbour until next year unless my cancer number goes up, my symptoms change, or my other blood counts go up.  I’ll monitor it with Dr. Tan. 

While I’d prefer that my cancer be back in remission, Dr. Jabbour said that I can do real well with my cancer numbers as low as they are.

So, I thank God for my good news and I thank all of you for your prayers, concern, and well wishes.

MD ANDERSON EXPERIENCE

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 4^th 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 3^rd 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 3^rd 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.

TIME CHANGE

I suppose that I still look at Time Change as the time of year that we either gain an hour of sleep or lose one. I think many people think of the change between Daylight Savings Time and Standard Time in much the same way. Although after this many years it matters less than in years gone by, this year, I’ll consider Sunday’s time change with a little more interest. This year, “fall back” means that I will spend one more hour at home before heading to Houston, Texas.

I will leave for Houston on Sunday morning after I get up and tend to some family business. I’m heading to the M.D. Anderson Cancer Center in Houston. I have an appointment Monday morning at 9am. All my records from Dr. Tan’s office have been forwarded and I’ll be carrying with me the original slides from my initial bone marrow biopsy.

In phone conversations with Dr. Tan, we decided that it was time for me to get a consultation from M.D. Anderson. While he initially was going to wait until after my December blood test was performed to make the decision, I advanced the decision because I’d rather do it this calendar year than start with a new deductible in January. So, after talking it over with Dr. Tan, I made contact with M.D. Anderson Cancer Center.

The appointment process at M.D. Anderson is that I had to apply for an appointment. After they obtained my medical records from Dr. Tan and reviewed them, they determined whether they would accept me as a patient. After accepting me, they have contacted me several times and emailed me information. One item was a nine page medical history form to fill out. M.D. Anderson informed me that I had been assigned a doctor in the Leukemia Department and to expect to be in Houston for 3-5 days. The first day will begin with a detailed medical interview and then be filled with x-rays, lab tests, and bone biopsy or biopsies, etc.

M.D. Anderson is regarded by many as the leading cancer treatment and research center in the world. Many of the chemotherapy drugs and treatment protocols that oncologists use have been developed at M.D. Anderson. Its Leukemia Department is second to none. My doctor is a leading researcher and clinician in Chronic Myelogenous Leukemia (CML), which is my kind of leukemia. Apparently, he only treats patients with CML. I hope and pray that he has some good solutions for me.

When I was first diagnosed with CML, my oncologist, Dr. Tan, advised that I go to M.D. Anderson and try to get accepted in one of their clinical trials. I responded that I didn’t want to be experimented on. I asked him to treat me instead. I was familiar with clinical trials where they give the patient too high, too low, and experimental drugs…all in the name of research and trying to find precise treatment protocols. Well, I understand the need for clinical trials but I decided it wasn’t for me. Well, that was when I was forecasted to respond well to my chemotherapy drug, Gleevec. Now, that I’ve come out of remission I’m not so opposed if it might find a good treatment protocol.

While I don’t necessarily expect to be recommended to participate in a clinical trial, I really don’t know what to expect beyond the first day. After the first day of tests, I don’t know what else there is to do besides report back to me, unless they want to try some changes in my treatment. I know they have specialized tests which will help determine the probable further effectiveness of Gleevec on me, along with other chemotherapeutic drugs. Perhaps trying to isolate the best chemo drug for me is why I have to be there 3-5 days.

While I’m not thrilled to be going into another medical facility and I really dread the bone biopsies again, I’m hopeful that it will be worth it. Even at that, if I ever undergo a bone marrow transplant, it will be done at M.D. Anderson. I suppose I do fear that the doctor will recommend a more aggressive treatment regimen. Aggressive treatment regimens are generally not pleasant whether it’s cancer or most other medical conditions. I especially hope and pray that I don’t hear the recommendation for a bone marrow transplant. That is just a whole new mental stratosphere that I’m not ready to enter yet. But, I might have to get there in a hurry. It’s just an unfathomable option for me at this moment.

So, Sunday morning (or Saturday night) when you set your clocks back and change the batteries in your smoke detector, please say a prayer for my family and me.  Thank you!!