Meet Akaimi ~

I have an incurable form of cancer called LGL Leukemia. It likely started in early 2010 with what I later found out to be symptoms of anemia- shortness of breath and stabbing pain in my back during inhalation. These were symptoms my PCP and ER doctors chalked up to a pulled muscle, which I vehemently denied was the case. A few days following the onset, I’d completely lost my voice and didn’t have the physical strength to walk more than 50 feet without stopping to rest. I was hospitalized for 3 days during the initial episode, with no concrete explanation for the symptoms or the fact that I’d developed pleurisy in my left lung (inflammation of the lining) without any preceding respiratory infection. I was told by my PCP that certain autoimmune disorders, like lupus, can cause pleurisy of an unexplained origin. I was tested, but everything came back normal.

Later that year, I experienced the onset of new symptoms- a severe aching in my muscles and joints that mimicked the pain one feels after falling down multiple flights of stairs. I hurt literally from my neck to the joints in my toes. I returned to my PCP after falling in the bathroom while trying to stand up from the toilet, because the pain was so unbearable. She diagnosed me with Fibromyalgia. I began taking Cymbalta and started to feel relief from the aching discomfort. I thought we’d found a name and solution for what was happening to my body.

Two months later, January 2011, I developed sepsis from a scratch on my hand that had quickly become infected in under 24 hours. Again I was hospitalized in order to receive IV Vancomycin (which felt like an inferno blazing through my veins). Again, there was no explanation as to how such a severe, life-threatening infection invaded my body in a relatively short time.

Seven months post-sepsis I developed pneumonia in my left lung, out of the blue. I’d been experiencing shortness of breath again and began using my inhaler (as it was speculated that I had asthma). By the third day, I could literally feel the fluid swishing in my left lung, while my right hand was placed over my chest. I underwent antibiotic treatment and felt back to “normal”.

Two years following the initial onset of “strange symptoms” I’d relocated with my job. I’d taken a trip to Atlanta at which point I began having the shortness of breath and stabbing pain in my back. Upon my return home, I began feeling ill, and sure enough, the following day I could hardly move. My body and joints ached from head to toe. I wound up seeing a new physician in the city I’d just relocated to. Since she didn’t have access to any of my medical records, she ordered a full panel of blood work. She had me return to repeat the labs 3 times, stating she thought there was a mistake, but the results came back worse with each subsequent visit. The next call I received was from the oncology department, scheduling my intake appointment.

In the meantime, I was battling gastrointestinal issues that caused my abdomen to distend to the proportions of a pregnant woman in her second trimester. My intestines would lock up for several days at a time. It was suspected that I had gastroparesis, even though I’m not diabetic. When I finally had an endoscopy/colonoscopy, it was discovered that I also had unexplained inflammation in the lining of my stomach. I suffered from a double eye infection that sealed both my eyes shut over Christmas 2012, as well as recurrent shingles infections (at one point I had 8 in 6 months).

My first oncologist gave me the brush off. She felt that I had benign ethnic neutropenia. I requested that she perform a bone marrow biopsy anyway to rule anything sinister out. She refused. I researched my past medical records, which showed no evidence of ethnic neutropenia, and returned to her again. She became livid that I was questioning her authority and judgement. She called her superior into the exam room and I went over my symptoms and history. Her superior suggested the run a flow cytometry test to check for a disease called LGL Leukemia. He assured me that he didn’t think the test would show anything remarkable, because I didn’t fit the “stereotype”- 50 – 60 years old with rheumatoid arthritis, but he wanted to put my mind at ease.

The test yielded positive results for not one, but two clonal markers, and I was immediately scheduled for the bone marrow biopsy I’d requested 5 months earlier. I received a second opinion and second bone marrow biopsy in June 2013, which confirmed the diagnosis of Large Granular Lymphocytic Leukemia, at the age of 36.

I began low-dose chemotherapy in October 2013, since I was symptomatic and my quality of life was drastically declining. I take the oral chemotherapy pills once per week on Sunday, and I’m essentially bedridden until Wednesday or Thursday of every week. This is my new normal; something I’m still learning to live with and adjust to almost a year later.

This disease, though indolent in nature, is very unpredictable and truly life altering. The things I once took for granted, like going to the movies on a Friday night, or grocery shopping after 5pm doesn’t happen anymore. Now, I have to take into account how crowded a store will be and how many germs will be floating around. I have to put hospital grade antibiotic cream on paper cuts to stave off potential infection. When I do experience any type of infection, it’s emergent. There’s no more wiggle room to say, “I’ll just wait and call the doctor in the morning.” I’m missing out on being a first-time grandmother, because I can’t be around my new granddaughter when she receives live vaccinations. This was definitely not the life I’d planned to live in my thirties, but I’m grateful to still be here.

~Akaimi

08/04/2014 – San Antonio, Texas