It begins in April 1999. It started as a persistent pain in my left hip that lasted for over 18 months. I received numerous MRIs to evaluate the area and was on my way to see a Neurologist when my doctor ordered a routine blood test to eliminate other causal effects.
The results floored him when it came back showing a HCT level of 17. He didn’t believe the results so he ordered a second test, then two units of blood for immediate transfusion! He was surprised to see me still walking around and was amazed when I told him that two weeks prior I had competed in a team triathlon. Instead of seeing a neurologist, I was promptly admitted to the Naval Medical Center at San Diego.
Things then turned for the worse when I was told I had cancer throughout my lymph system, my blood contained cancer cells, and 90% of my bone marrow was cancerous.
Coincidentally, I also started to experience the side effects of the cancer to include night sweats (more like swimming) and an antibody started to target my remaining good blood cells for destruction (clinical diagnosis was autoimmune hemolytic anemia).
Things did not look good and both Beth (my wife) and I thought I would not live to see my sons first birthday. My mom and dad and Beth’s mom were on the next flight to San Diego and stuck with us throughout the entire affair. Thank God for the gift of caring and supportive parents. We would have never made it without them!
When we got the diagnosis, our friends and my sister immediately scoured the web and started to gather as much data as possible on this disease which we now knew to be Waldenstroms Macroglobulinanemia.
My Oncologist, who is extremely gifted and talented, immediately went to work pumping me up with chemotherapy and 24 units of blood over the next month.
It was a very tough time for me since some days I did not have enough red blood cells to be able to get out of bed and I ended up spiking fever after my first chemotherapy and spent fourteen days on the most hideous antibiotics you can imagine (one of the side effects of this cancer has been to eliminate my immune system so an opportunistic infection could be fatal). It was like being on the day after a monster-drinking binge for fourteen days!
My first round of chemotherapy was 2Cda. This aggravated the hemolytic anemia so we immediately switched to CVP. The prednisone was the only agent that stopped the hemolytic anemia. After the first month in the hospital, I was finally able to get out of bed a start walking around the ward. This helped my spirits a great deal and my mom was a real trooper walking hundreds of laps around the ward with me.
After two months in the hospital and the answers to many, many prayers, I was released from the hospital. I still had much more chemotherapy to go through, but I was home and it felt so good!
I immediately started a heavy-duty exercise routine to gain back the thirteen pounds I had lost in the hospital. At first I could only walk around the block, but by the end of September, I was road biking about one hundred miles, running four miles, mountain biking for one-two hours, lifting weights, and swimming two miles per week!
At the end of September I competed in the Ridgecrest National Off Road Biking Association Mountain Bike race (my first ever mountain bike race) and placed first in my class and beat eighty to ninety percent of all beginner competitors. The next weekend, I won first place in my class at the Edwards AFB fitness triathlon. Things were looking very good for a full recovery.
Things were going very well again until the beginning of November when I started to notice some weakness in my legs. We thought it was due to withdrawal from the high doses of steroids I had been taking over the past few months and was now tapering from.
But this was not to be the case. By 7 December, I was basically paralyzed from the waist down, had no upper body strength to speak of, and had lost partial control of the left side of my face. It was serious and the doctors decided to throw the book at it.
I spent the next week getting plasmapheresis, high dose steroids, and Rituxin to go after the cancer. The diagnosis was a Waldenstrom’s autoimmune antibody induced polyneuropathy. Thanks to many thoughts and prayers, I started the long process of recovery again. I lost seventeen pounds due to the neuropathy (down to 4.3% body fat). For several weeks I went in for plasmapheresis twice a week and immunotherapy once per week (4 total doses).
Recovery from my autoimmune induced polyneuropathy (paralyzation) seemed to be going quite well through Christmas, but two days after Christmas; I gave birth to a kidney stone. I found myself lying on the bathroom floor of a local gas station trying to figure out what was going on and praying that it was not a horrible off shoot effect from the cancer, the immunotherapy or the plasmapheresis.
After several hours of agony, I relented and headed to the emergency room. By the time I arrived, I was in such pain that I was screaming to God to end my existence. I can now appreciate the pain Elizabeth went through delivering our son Evan. They immediately hit me with a shot of morphine (not enough) then another. I passed the stone about four hours later.
In the beginning of January, I regained enough of my muscle strength and nerve control to be able to start walking, swimming and biking lightly. I started the long process to put back on the seventeen pounds I lost due to the neuropathy and was feeling very good. They did finally determine that the neuropathy was being stopped by the high dose prednisone they were giving me in the hospital.
The plasmapheresis seemed to have little effect on the autoimmune antibodies but was having a very punishing effect on my veins and body. On the last plasmapheresis treatment, they had to stop half way through due to extreme cramps, burning sensations and seizures in my arms. The immunotherapy was not bad at all. I hardly noticed any effects except a tiny bit of fatigue.
My blood numbers were starting to return to normal (IGM level for me has always been between 1600-2100) and things were looking really good for a full recovery and a good showing in the Edwards AFB triathlon on 26 Feb 00.
On 11 Feb 00, I was getting my normal blood tests accomplished and I thought all was well when I received a call from the flight surgeon advising me that my platelet count was critically low (21,000, normal was 360,000). The next day we were at Naval Medical Center San Diego in my Oncologists office. He performed a bone marrow biopsy and some more extensive blood work. I was restricted from skiing, biking and all activities that could lead to cuts and bruises due to my inability clot blood.
They told me that at my level of platelets, it would take 26 minutes to clot an average cut. They also performed a Dexascan to determine how badly I was developing Osteoporosis due to the high doses of steroids I have been on for almost a year.
The first course of treatment for the low platelet counts was to increase my prednisone dose and to take me off all of my other non-essential drugs to try and isolate the cause for the destruction of my platelets. The increased steroids seemed to work.
This was a mixed blessing because we were happy that I would not bleed to death, but bad news because the dose required to stop the destruction is twelve times the normal amount produced by our bodies and at this level, the long term usage would start to do permanent damage to my organs, joints and tissue. I felt great and my exercise program was as intensive as ever, but the numbers on a sheet of paper were telling me something different.
Luckily, the day before the triathlon, my blood count reached a safe level for me to compete in the event. I placed first in the mountain bike class and beat the second place person by almost 20 minutes. I felt great and still feel great today. My Oncologist decided to try one more time to reduce the level of steroids I was on to see if my platelet count would not drop (thinking it may have been one of the other drugs I had been taking).
We prayed daily that the counts would not drop. That was not to be the case, as my count dropped almost immediately. We were blessed with some very good news from the Bone Marrow Biopsy, showing that the cancer now occupies less than 30% of my bone marrow (down from 90%) and it could still drop even more. The Dexascan showed very little bone density loss due to the prednisone, which defied all of the doctor’s expectations.
My Oncologist recommended that I have surgery to remove my spleen (where almost all autoimmune antibodies reside) to stop all of these antibodies that are attacking all parts of my body.
Their thought was that by doing this my immune system (which has been severely repressed since last April) should return to normal, the platelets should no longer be destroyed, the paralysis should not return and the autoimmune antibody that attacked my red blood cells last spring should never return.
It seems I am the poster child for autoimmune antibodies and prednisone! My surgery was accomplished on 22 Mar 00.
It took 7 days in the hospital and about 6 weeks on convalescent leave before I returned to work, but only two weeks before I was on my bike again. I rode about 175 miles that week and attended our IWMF conference.
It took a while longer before I could run or swim but by May I was competing again placing fourth in both a mountain bike race and a triathlon.
In June of this year we faced another setback. While tapering from the prednisone, my platelet count dropped unexpectedly. My oncologist felt that the spleen removal surgery had failed and now wanted to do an autologous bone marrow transplant.
We set up the consult for later in June and in the mean time started seeing a homeopathic doctor who had been recommended to us by a friend. His mother had a similar problem and he was able to cure her using homeopathic remedies.
I had nothing to lose so I tried it. Within two weeks, my platelets were back to normal and have not dropped since. I don’t know if it was the remedies or the prayers, but I was out of the bone marrow transplant and I could not have been happier.
In July, my gallbladder decided to roll over and die. With the autoimmune hemolytic anemia, it is not uncommon to develop gallstones. I had the surgery at night and was back on the road the next day heading for home.
Three days later, I was interviewing with a Group Commander for my current job–Squadron Commander. It is very rare for a pilot to be appointed a commander over a non-flying squadron.
My appointment had to be approved by a 3-star general. In August I competed in the Mammoth Lakes Triathlon with a course elevation of 8200’ and placed first in my class.
In October I placed first in the Edwards AFB Fitness Triathlon and set a new course record! Things were looking really good that we were finally out of the woods with this cancer. By the beginning of November, I managed to get totally off the prednisone.
This lasted only about a week and half when we noticed a rise in my bilirubin and other indications that the hemolytic anemia was rearing its ugly head again. Right now I am back up to 7 mg of prednisone and we are trying to determine the minimum level to keep this antibody in check.
Two weeks ago I applied to get back on flying status with the Air Force. The doctor said I had very little chance due to the turbulent year I had just experienced. These were the same doctors who said I would be 100% medically retired the year before.
I have great faith that my exercise program and work ethics will shine through any difficulties that have arisen from this disease.
Last week I received news that I was selected to attend Air Command and Staff College. This is a very elite school for mid-grade officers and represents a huge stepping stone in my career as an Air Force Officer and Test Pilot.
We don’t know what the future holds for us, but we are keeping a positive attitude and letting God decide our course and destination.
People always ask me how I do it. I would say my greatest strength is not allowing cancer to rule my life. It is a part of my life, but does not control any facet of my life.
I refused to have a central line put in because it would be a constant reminder that I have cancer and it would place limitations on how I had to live my life. I never think about the disease.
I refuse to let it handicap me in any way. I still fly gliders, I exercise like I have no disease, and I work at my job just like anyone else does. Nike came up with a great motto: "Just do it!" I think we should all live our lives that way.