Today is a day to celebrate!
7 months! It’s been 7 calendar months since I had my last IV infusion. 7 months since the last time I had Orencia. It’s been 7 months since I’ve had a biologic disease modifying anti-rheumatic drug (DMARD). It’s been 7 months since I’ve had medications forcibly pushed into my veins. It’s been 7 months since I’ve spent roughly 2 hours sitting in a chair at the Infusion Center. It’s been 7 months since I’ve had any medication for Rheumatoid Arthritis.
7 months ago I did not make a decision that it was my last infusion, for the time being. I was beginning to lean towards taking a “vacation” from my medication, I had already talked to my doctor about needing a break from methotrexate. A little information about methotrexate:
METHOTREXATE SHOULD BE USED ONLY IN LIFE THREATENING NEOPLASTIC DISEASES, OR IN PATIENTS WITH PSORIASIS OR RHEUMATOID ARTHRITIS WITH SEVERE, RECALCITRANT, DISABLING DISEASE WHICH IS NOT ADEQUATELY RESPONSIVE TO OTHER FORMS OF THERAPY.
I took methotrexate for approximately 10 of the past 11+ years. I had taken a break from it before when the side effects had gotten to be too much. When I was taking the pills, I was having headaches that would last 4-5 days. The dose was every 7 days. I was nauseated. I was exhausted. I was depleted. For the past 5 years I had been receiving a methotrexate injection once a week at the infusion center. The side effects were a lot less than with the pills. I wasn’t having headaches, the nausea was minimal, and the exhausted, depleted feeling wouldn’t last as long.
My idea was to take a break from methotrexate and continue the Orencia IV infusion. My symptoms had been minimal. I know my doctors didn’t want to use the word ‘remission’ but I know that’s where I was. The morning stiffness was nearly non-existent, the aches in my joints were few and far between, my symptoms were not interfering with my ability to complete my activities of daily living nor were they interfering with my quality of life. My plan was to continue Orencia to maintain this level of functioning.
Around mid-May I woke up with a strange pain in my neck, I thought I had slept in the wrong position and had a knot. After two days of dealing with this I made an appointment with my primary care doctor. I had a weird little ball on the back of my neck that was hurting. The first question my doctor asked me was if I was fighting something off because I had swollen lymph nodes. I had no other symptoms other than the swollen lymph nodes, lymphadenopathy. She told me I had to wait a week and if it didn’t go away that I would have to start a course of antibiotics. They didn’t go away, I took the antibiotics for the recommended course and they got better. A couple of weeks later they were back. I contacted my doctor right away and she referred me to the Head & Neck Specialist.
The Head & Neck Specialist started me on a new course of antibiotics… They didn’t help, the lymph nodes were getting bigger. Since the antibiotics weren’t being effective, she ordered a CT scan with contrast. The technician told me I would have results in about 2 days. You can imagine my surprise when I received an email from the doctor within the hour. We scheduled a Fine Needle Aspiration (biopsy) for the next day. She changed the antibiotics to something stronger. The results of that biopsy came back as positive for MRSA. She switched the antibiotics again to something that would be effective against that specific strain.
The antibiotics didn’t help, again. 8 days into a 10 day course of antibiotics I spiked a fever and the lymph nodes were still getting larger. Due to my history of immune-suppressant medications my primary care doctor had given me strict instructions to go to the Emergency Room if I ever had a fever of 101* or higher. After 2 bouts of pneumonia, I listen. Although this time I really didn’t want to go to the emergency room and I texted my acupuncturist to confirm. She urged me to get to the ER immediately. We went as soon as I finished watching American Ninja Warrior. (I know, I know… I was stalling and dreading going to the ER.)
The ER doctor was confused as to why I was there. He sent me for a chest x-ray since I was starting to cough and have pain in my chest. Considering I’ve had pneumonia twice before they usually check for that now. The x-ray came back clear. I had another CT with contrast… the lymph nodes were bigger than they had been in the first CT. He started an “atomic bomb” IV antibiotic and let the hospitalist determine that I was spending the night. I knew it… That’s why I didn’t want to go. While I was in the hospital, they had me go in for a Core Needle Biopsy and then let me go home. The doctor put a big needle in my neck and using an ultrasound determined when he was deep in the lymph node to take a piece out for pathology to have more cells to look at. The nurse got a little bit worried because during the procedure she asked if I was ok and I barely responded. I had my eyes closed and I was practicing meditative breathing. I told her I was taking a nap and she was relieved. I guess they’re not used to people practicing a progressive relaxation and using self-hypnosis to get through a procedure. They estimated it would take 48 hours or so to get results.
We waited for over two weeks for results. The local pathologists couldn’t determine what they were looking at. The regional pathologists saw abnormal cells but couldn’t identify them. The Head & Neck surgeon finally said the words I had been dreading. “There is a possibility that we may be dealing with lymphoma.” My biopsy was sent to Stanford Hospital for their pathologists to look at. We were hoping that they would be able to give us a definite answer. In the meantime, my husband and I had to hold it together to not freak out my mom and the kids while we dealt with the uncertainty of her words. Life had to go on. So we went to Disneyland. Might as well, right?
On the last day we were in Disneyland, we were breakfast with Chip & Dale when I got a phone call from the Head & Neck Surgeon. She told me that the pathologists at Stanford weren’t able to identify the cells either. They ran all the tests, did all the stains, and they could tell that the cells were abnormal but they couldn’t tell us why. I needed a CT scan as soon as we got back.
3rd CT scan with contrast within 30 days… The technician needed the radiologist’s approval before he even set me up for it. I was told the results would be back after a couple of days. The results of this CT scan were that the lymph nodes were getting smaller.
Finally, some concrete good news. The lymph nodes getting smaller drastically reduced the possibility of lymphoma. The most likely scenario is that I had a random infection that caused the lymphodenopathy, that the first 3 antibiotics that I took weren’t effective for this infection, that the “atomic bomb” IV antibiotic that I got in the hospital finally got rid of it, albeit slowly, that we may never know what infection I had, and that if this ever happens again with these lymph nodes swelling I’ll go directly to the Head & Neck Surgeon to schedule for them to remove a lymph node to see what’s happening.
Those months were hellish to say the least. It was exhausting to be dealing with all the medical tests and procedures, taking medications. All while staying strong, putting on a brave face, and moving forward as if nothing was happening for the benefit of my kids and my mom. There was no way I was going to worry them without having any concrete information. I was also still coaching with the American Heart Association and I was not willing to let this affect the experience for the participants on my team. They knew something was going on because I wasn’t allowed to run or workout while all this was happening.
During this process, my rheumatologist confirmed that I couldn’t continue with Orencia due to the risks associated with having this type of IV infusion during an infection. When I spoke with her again in August I told her that other than the symptoms of the infection that I wasn’t feeling RA symptoms and that my goal was to finish the year without any medications. She agreed without much argument. She was going on maternity leave and assured me that if anything changed there would be a doctor covering for her. I have a phone appointment with her next week, I’m hoping we can agree to extend my medication vacation even longer. My initial goal was to finish 2015 without meds, my next goal is to get to April 30th and celebrate one year.
The past 6 months have been a roller coaster of emotions. I think that was the most exhausting part of it all. It’s a lot of hard work to appear as if nothing is wrong when inside you don’t know just how much your world will crumble. It’s taken me some time to get back on my feet and that makes today’s celebration that much more special.
Today I celebrate my health. Today I celebrate remission. Today I celebrate my access to quality health care. Today I celebrate living.