“Un Año Nuevo, Una Vida Nueva,” said one of the doctors years later in English to me.
Spring 2008-From time to time, my daughter, at almost 4 years old, would try on my wigs and just laugh innocently as she danced around and looked at herself in the mirror. One day, she came down the stairs into the den with one of my long wigs on and started singing the “Silly Hat” Barney song. While a part of me was hysterical, another part of me wanted to scream and cry out loud. I always would think in the back of mind “What if it was her?” It ripped a piece of my heart and soul each and every day. What if, just what if it was one of my children instead? I could never imagine.
Spring 2008-Despite being on Methotrexate for several months and having a radical thymectomy, my condition was not improving. If this was truly primarily a multitude of autoimmune diseases, why was I not responding to the typical autoimmune treatments? My husband and I heard from Johns Hopkins which I applied to back in the early fall of 2007. They would finally see me for a consultation. I was scheduled to begin with a consultation with the Rheumatology Department. We drove down to Maryland on a Sunday afternoon. The long car trips were difficult for me to take, but we prepared with food, pillows, blankets, DVD’s and containers for me to urinate in so we would not have to continuously make stops. Often times, I would have to use the bathroom every hour. Of course, it was also raining the entire trip which made traveling conditions more difficult. We made it down to the hotel which was rather disgusting, but we managed. We stopped at a diner to pick up breakfast the next morning and ate it in the car. We luckily left relatively early to get to the appointment and relied on the GPS system in the car. Unfortunately, the hospital building we were going to was not on a digitized road, but we ultimately found the location. The doctor was running behind schedule, but I was finally taken in with my approximately 275 pages of medical documentation packed in the Spiderman backpack. She sifted through some of the documents quickly and began to consult with me. She examined me and found nothing unusual on sight that we were not already aware of. She had a different perspective on my case though. She knew there was an autoimmune component to my disease process but questioned whether or not it was primary or secondary. Once again, we discussed my non-responsiveness to the typical autoimmune disease drugs and began discussing the possibility of more intensified treatment, namely Rituxan, a monoclonal antibody that selectively targeted CD20+ b cells. It was a good possibility given the results in the biopsy report. She wanted to repeat blood work and send me for a hematology consultation immediately. Before leaving the office, she had me scheduled for an appointment with the Sydney Kimmel Cancer Center a week later. We made the return trip home in much better weather conditions. The following week we were back on the road again. Once again, it was raining, but this time there were torrential downpours. We stopped at a rest stop in New Jersey, because I was not feeling well at all. I pleaded with my husband to turn around and go back to NYC, but he was determined to make it. He calmed me down, and we got back on the road again. It took probably an additional one and one half hours to get there, but we safely made it. Towards the last hour of the trip, the sun shone brightly. We were headed to a different part of town this time, and were able to stay at a much nicer hotel. The next day was extremely long, and I had to have a tremendous amount of blood drawn. My blood pressure was also really low that day. The hematologist at Johns Hopkins also agreed that Rituxan might be a good choice of therapies and promised me he was not just going to treat me with“ Band-Aids” anymore. I really felt very confident in him and was looking forward to starting treatments as soon as possible. I was too weak to make the trip home that evening, and we had to unexpectedly stay overnight in South Jersey. We got on the road early the next morning, and the kids were thrilled to finally see us when they arrived home from school.
May 2008-The consultation reports were sent back to the NYC doctors. E-mails were exchanged between the Johns Hopkins Hematologist and me regarding the start of the Rituxan treatments. There was much confusion as to who would ultimately be ordering the treatments, because once again, I did not fit neatly under one speciality.
June 2008-I returned to the NYC Hematologist/Oncologist to repeat another bone marrow biopsy, as there was some question as to whether or not this was a smoldering lymphoma. I was prepped, this time being much more nervous, because I knew what to expect. Something told me to remind the doctor that I am highly allergic to iodine which he had applied to an area on my back. He quickly wiped it away and used another agent to cleanse the area. The biopsy was somewhat successful. The doctor was able to retrieve a piece of the bone, but I began to have an allergic reaction. I had to take oral steroids at the office and was given an EpiPen to travel home with. The doctor found the reaction quite unusual but did not know what to attribute it to. Who would think that this would be another major clue related to my diagnosis? Of course, by the time we left the office, it was the height of rush hour. Needless to say, the trip home was from hell and depleted every ounce of energy I had left in me that day.
June 2008- Seven women from the community decided to bring in lunch for me which was such a wonderful thought. Many of them had not seen me in person for awhile and were amazed at the dramatic weight loss. I had gone from a size 12-14 range down to a size 6. By that time, I had lost about 30 pounds. I traded in my long hairpieces for 2 short, more manageable wigs, and they were thought to be becoming. Most of the wigs initially look pretty, but after a few months of wear, look pretty ratty. It was not easy to contend with and became quite an expense.
July 2008-After numerous battles with the insurance company and being extremely persistent with a number of doctors, the Rituxan treatments were finally approved. It was a bittersweet moment. I was ecstatic about trying a new treatment that provided a great course of help and was so successful in so many autoimmune cases but was scared to death of the potential side effects, one of which could have been death. They prepared me for the infusions with pre-medications, Tylenol and a large dose of IV steroids. After being premedicated and waiting about a half an hour, we were ready to slowly let the Rituxan drip through the IV line into my bloodstream. I prayed as hard as I could and had my eyes fixated on the digital readings of my vital signs. The first 30 minutes were critical and pretty crucial. The infusion was going well. I left the hospital after about seven hours and was feeling mighty energetic. I knew it was a result of the large dosage of steroids. I remember only wanting “Rita’s” soft serve ice cream, so we stopped there on the way home to satisfy my craving. After all, I was told I was a very good girl that day and handled everything like a trooper. One down, one more to go. Would it work?
August 2008-The time passed rather quickly, as the summer months often do. It was my favorite time of year but also one of the most difficult times in terms of my health. I seemed to be ultra sensitive to the heat and sunlight. The time came for the second infusion. It went off without a hitch. Now, just like with previous treatments,it was time to wait and monitor my condition.
HAPPY, HEALTHY 2015!