The lucky dog that I am, the saga of my brush with cancer underscores this humbling realization. It brought me close to people whom I would have never known the way I did.
It all started when a small skin outgrowth, that I had lived with for more than fifteen years, started growing. It was on the left leg on my inner thigh. Annoyed at the constant abrasion with clothes, I decided to set up appointment with a surgeon. Fortunately, my insurance does not need referral for me to visit a specialist. On February 4th, 2009, I walked into the office of Dr. Mark Bailey in Garland, TX. He, after some deliberation, decided to cut it off then and there. He commented something about it having a root longer than expected. As he patched me up with a band aid, he said he would call me back with the results of the pathological tests on the tissue.
I admit that I sometimes go overboard trying to keep an eye on redundant medical tests – being the paranoid I am. I protested that any pathological test on this useless piece of meat was nothing but source of more insurance traffic. However, I was told, this was standard procedure, and must be done. I went back to work that day.
When the phone rang on February 17th, I was engrossed at work. Dr. Bailey revealed that pathology reports suggested that I had lymph cancer (“anaplastic large cell lymphoma”). In a moment, I was dragged back to reality. My reaction must have been incredulous. Compassionate but firm, Dr. Bailey suggested that he did not know the stage of the cancer, and an oncologist must be consulted without further delay. He referred me to Dr. Jairo Olivares.
The days that followed were agonizing. I was in complete denial. Still playing out three full sets in a singles tennis match, I did not feel anything wrong with my body. The thought of keeping it a secret from my wife until I confirmed with Dr. Olivares briefly occurred to me – I rejected it instantly. The shadow of an invisible force closing in was constantly on my mind. I reviewed my will and last testament to make sure it said what it needed to. I made a list of things my wife must know and act upon if I were not here – things like when next payments were due, when next oil changes were due, tips to avoid getting ripped off at local service centers – things that I alone used to handle. The list grew everyday. Everywhere I looked I discovered something that depended on my presence. I wanted to make it less overwhelming for my wife, so I started documenting the details of how I did the small things. I started demanding self help from the kids, and the bedtime fairy tales got replaced with stirring tales of courage in the face of adversity. I called my life insurance agent just to say hello, silently updating his new phone number in our records where my wife would find it easily. Dying was not easy!
Dr. Olivares prescribed PET/CT scan to determine staging. The negotiated cost with insurance for this procedure was around $4,500. A combination of Positron Emission Tomography and Computer Tomography, the procedure tracked the concentration of a certain “tracer” that was injected into my body an hour before I was sprawled in a tunnel. The idea was to identify cancerous cells from head to leg. Cancer cells grow very fast. That is why they consume sugar at a much higher rate than other cells. This tracer was kind of like sugar. As these cells would consume it at a higher rate, it would “flow” towards these areas instead of getting evenly distributed all over. They were colored, too! The computer image could then look at the concentration of this color and determine where the enemies were.
The results cleared my head, neck, chest, abdomen and pelvis. It was clear that it was not systemic, at least yet. “Systemic” refers to widespread. However, it found that some lymph nodes in my right axilla (underarms) were enlarged, and “may represent lymphoma involvement”. It also showed “generalized increased activity” near my nose and tonsil area, without the actual presence of “discrete mass”, which basically meant that the tracer density was heavier than normal in those areas, but not heavy enough to draw conclusions. It was basically more gray – neither black nor white.
While interpreting the results with us, Dr. Olivares did paint an accurate picture of this grayness. However, in spite of admitting that there was no conclusive evidence yet, he wanted to start chemotherapy anyway. He did not want to waste any time, because, according to him, a localized instance could start spreading and turn into a systemic disease at any time. Four pieces of evidence – the PET/CT scan, excision biopsy from Dr. Bailey’s labs, blood test reports and external examination of enlarged lymph nodes – were enough to convince him that a localized instance existed, and chemotherapy must be started.
That was devastating for me. Chemotherapy is an invasive treatment, and one must be certain that it is indeed needed before administering. And it is painful!
I wanted a second opinion. Not knowing where to turn, I emailed the reports to my school friend Arun, who was a researcher at Harvard Medical School, Harvard University. I can write volumes on Arun, but I will refrain from doing so here, as I have not sought his permission. It should suffice to say that he is a person who would leave no stone unturned for a friend.
Arun sought second opinions from dozens of his peers and co-professionals, including MD Anderson at Houston, that being quite close to me. Within days, it was clear that everyone who had responded to Arun’s emails wanted to see me in person. I had to choose. At this point, Arun insisted that I visit him, as Boston was the home to Dana Farber Cancer Institute, a place where advanced research on lymphoma was done. He wanted to be close to the action, translate doctors’ lingo to me, and influence a speedier resolution if possible. He had also contacted an oncologist at the Dana Farber (where his wife was researching on breast cancer), and they wanted to see me as well.
Though Boston was almost 2000 miles away, my wife and I felt that it was the right thing to do. The kids’ school was notified. I went on Short Term Disability at my work. The Short Term Disability Insurance Company needed a statement from a doctor in order to start sending me paychecks. However, at that point, I had none. I hoped to have one, once I was in Boston. Trying to save money, we decided not to fly but to drive to Boston from Texas!
We have, as a family, undertaken many a road trips. This one was, however, special. It would be etched in our memories for a very long time. Driving to Boston from Dallas, TX, with two five and half year old kids, in three days, was an ambitious exercise. Our appointment with Dr. Eric Jacobsen at Dana Farber Cancer Institute was on March 24th. We started driving on March 21st.
Our home on March 21st night was Knoxville, TN. Our home on March 22nd night was Chambersburg, PA. When we finally rolled into the parking lot at Arun’s place on 23rd, the celebration of achievement and reunion was strangely subdued by what loomed large.
Arun was adamant that we stayed at his place. If you knew him (and I do), you would not go against his passionate wishes. I was meeting his wife and daughter for the first time. He was meeting my family for the first time. The time we spent together at Boston was good enough to last a lifetime. This story, however, is about my cancer.
What I did not know until then, was that Dr. Jacobsen’s office had already requested my tissue slides from Dr. Bailey’s. They were already examined, all conclusions independently derived and validated. I vaguely recollect Arun sharing something about the slides on the phone before I had started to drive – I had been too overwhelmed to take note. I realized later that no time was wasted. The findings were too stark, too suggestive of catastrophe. Everyone was welcoming me with open arms – only to wonder what was going on inside this fragile body of mine. Everyone was looking at me with feigned spirits, but I could see the shadow of sympathy cloud the sparkle in their eyes. We talked about everything but cancer.
The appointment with Dr. Jacobsen went fine. He said that they needed to do more tests. He also made me sign a document which sought my permission to use my slides and test results for medical research, as not much was known about anaplastic large cell lymphoma. Harvard was, after all, an educational institution, and I could contribute to numerous lives by helping them learn.
The first test Dr. Jacobsen ordered was a biopsy of the enlarged lymph node from my right axilla. The very same morning, I was whisked away to a nearby building which was actually Brigham and Women’s Hospital. Dr. Monica Bertagnolli, Chief, Division of Surgical Oncology, was waiting for me. She was surprisingly updated on the details of my case. This was my first morning at Boston, and every doctor I was seeing seemed to have gone through my case history by heart. I do not know how that was possible. These were individuals of the highest order of intelligence and professionalism. No one had asked me to sign anything for insurance yet. No one had even bothered to ask me if I had insurance. They were least bothered about money. That was truly surprising to me. Was my situation that desperate?
Dr. Bertagnolli told me that she was going to ‘take out’ a lymph node from my right axilla, and I must keep real still. That was actually easy as local anesthesia made me forget that I had an arm. She talked about my work, casually poking around under my skin. She showed me the glass jar as she stitched me up, and promised a speedy report, but it might still take a week.
The first day was over. Now we had to wait for one week. Physically, I was still feeling great! We drove around beautiful Boston. We went to Revere Beach. We drove to Boston Harbor. I was under instruction that if I felt feverish or weak, I should immediately report back. The most common question that I faced during that stage from medical professionals was “did you have a recent drastic weight loss?” The fear was obvious. Would it start spreading? Would it turn systemic? Would it start consuming my vital organs?
March 31, 2009. My second appointment with Dr. Jacobsen – objective was to discuss the results of my lymph node biopsy. It was the day to face the music. I was ready by then. As we walked into Dr. Jacobsen’s office, he embraced me. The result of the biopsy was negative. It did not suggest lymphoma.
Dr. Jacobsen, aware of the fact that pressing matters awaited us back in Texas, said that this ‘almost’ cleared me of cancer – with a probability of 99%. To be 100% certain, he had to do another test, a bone marrow biopsy. However, he opined that I could give him some of my bone marrow, and start the long drive back without waiting for the result. That was also because we had discussed treatment options, in case tests were positive. It was already decided that treatment, especially, chemotherapy, was not feasible from Boston. Dr. Jacobsen had already referred me to his colleague at UT Southwestern, Harold C. Simmons Cancer Center at Dallas. Therefore, it was decided, that even if the results of the final bone marrow biopsy unexpectedly overturned other negative results, I would still pursue treatment at Dallas, and Dr. Jacobsen would discuss my case with whoever was seeing me there.
Bone marrow was collected from my backbone. It was not possible to use anesthesia. The sharp pain of the needle piercing my backbone was quickly over, and we started driving back. By then, it was almost certain that I did not have cancer. The drive back was, therefore, more relaxed. We covered less distance per day, staying at Harrisburg, PA, Bristol, VA, and Jackson, TN on our way back.
As per Dr. Jacobsen’s advice, I followed up with Dr. Robert Collins at UT Southwester Harold C. Simmons Cancer Center at Dallas. The result of my final bone marrow biopsy, was, of course, negative. Dr. Collins asked me to lead a normal life.
The one important lesson I learned from this saga was – if someone wanted to do chemotherapy on you or a loved one, please take a second opinion!