New Territory and Medical Investigation: Symptoms, Doctor Visits and Medical Tests
In spring 2011, I had occasional bouts of discomfort and excruciatingly sharp pain on the left upper quadrant of my abdomen. A friend who was at the time a medical resident advised me to schedule an appointment with my primary care physician as soon as possible. I had never to been admitted in a hospital or ever scheduled a doctor’s visit for any illness not even an annual physical exam. My remedy of choice whenever I felt ill was to watch and wait for the illness to somehow resolve itself and in worst case scenario indulge the support of over the counter medicine from the local pharmacy.
At the doctor’s office I responded to a series of questions, had a physical exam and blood was drawn for the lab tests. The lab results showed I had an iron deficiency given the low red blood cell count. I was advised to increase my dietary intake with iron rich foods and take iron supplements. As for the abdominal discomfort the ultra sound scans reveled that my abdomen was in perfect condition with no signs of irregularity. The advice at the time from my physician was to refrain from consuming gluten rich foods as that could be a possible cause for the discomfort.
Five months later my condition deteriorated. Dizziness, lethargic, felt like an elephant was sitting on my chest as I was having difficulty breathing whenever I lied down on my bed. I was back again at the doctor’s office only this time I was extremely frail, disoriented and tired. I could barely walk without holding the wall for support. The palms of my hands were yellow a convincing sign that I was severely anemic and my blood count levels must have dropped. Given that the discomfort in my abdomen was still present at the time I was also referred to a gastroenterologist physician to examine if there was a possibility of me having celiac disease. They also drew a lot of blood for lab tests after which I left the doctor’s office. Few hours shortly, I found nine missed calls on my cell phone from my doctor’s office. On returning his call he was firm and asked me to stop what I was doing and head over to the hospital and see a hematologist he referred to immediately. The results from my blood tests revealed I was extremely anemic with an alarming low red blood cell count of 4.4! The ideal red blood cell count for adult women is 12.0-15.5 grams/dL(deci litre) whereas for men is 13.5-17.5 grams/dL.
I arrived back at the hospital late that afternoon. The elevator doors opened wide to a big sign that read ‘Hematology Oncology’ at which point my mind began to race. The hematologist oncologist was very welcoming and comforting trying to reassure me that I was in good hands and will receive the best care possible. I could not help thinking if my symptoms meant I had some kind of cancer after all why was I having a conversation with an oncologist about my illness.
The immediate intervention at the time was a blood transfusion to address my acute anemic condition. My mind could not come to terms with having to receive a blood transfusion from a generous unknown stranger. Instead I opted for iron dextran an artificial substitute is known to have a high risk of causing serious and possibly fatal allergic reactions. Luckily I did not have any adverse reactions to the iron dextran intravenous infusion and it was anticipated that my red blood count would improve. Eight days later there were no signs of improvement as my condition further deteriorated. Loss of appetite, nausea, metal bitter taste in my mouth, excessive salivation, night sweats that would soak up my bedding, extreme fatigue and I could not keep my head up without support. I returned to the hospital a week later following the infusion for an endoscopy procedure following the iron dextran infusion to check for celiac disease as a probable cause for the discomfort in my abdomen. On the day of the endoscopy I could barely walk. Lifting my keys felt like I was lifting huge piles of steel.
My blood count had further dropped to a worrying level of 3.2! My doctor gave me no choice and had me receive blood transfusion as further tests were requested. Computerized tomography scan revealed enlarged lymph nodes in my arm pits necessitating further examination to check for any irregularities triggering the swelling of the lymph nodes.
You are too young to be diagnosed with this type of cancer
A biopsy of the lymph node tissue from my groin area was performed to examine lymph node abnormalities that was causing the swelling and affecting the lymph node function. He would take tissue samples from the node and place the specimens in special containers. I knew something was wrong from the worried look on my radiologist face.
The following day my friend who is also a physician and I returned to the hematology oncologist clinic for the lymph node biopsy test results from the hematology pathologist. In the examination room, my hematologist oncologist told me the results revealed I had a non-Hodgkin lymphoma known as chronic lymphocytic leukemia (CLL). I was very calm not surprised at all, no state of shock or tears. To this day I often look back to that specific moment and wonder why I did not respond hysterically to the news.
My physician friend who had accompanied me to the doctor’s clinic and had been waiting patiently at the reception was invited into the examination room to be told the news.
Mouth wide ajar, she collapsed onto the chair in shock and asked if I was ok. One would have thought that she was the one being told she had cancer. She was surprised at my diagnosis with CLL given my age and race. At the time I did not appreciate the extent to which my diagnosis was a rare one. Let alone I did not know much about cancer diseases. I had to undergo a painful pelvic bone marrow aspiration and biopsy to further tests.
According to the American Cancer Society, CLL accounts for about one-quarter of the new cases of leukemia in the United States and mainly affects older Caucasian adults. The average age at the time of diagnosis is approximately 72 years. CLL causes and risk factors are not well understood. I did not have any reliable information on the history of cancer in the family. Chances may be that someone in my ancestry might have had cancer and known one knew.
Finding the right doctor and hospital
Given the complexities of my diagnosis I found new hematologist oncologist who specialized on CLL. I have been fortunate to have an oncologist who is a renowned CLL physician clinician, educator, research investigator and is involved in clinical trials and drug development for CLL patients. Also an added advantage was that he was based at a hospital with outstanding comprehensive services given that cancer patients may during the cause of their care need a multidisciplinary approach for their treatment. The treatment plan so far has included oral medication and periodic IV treatment administered at the hospital. Despite being a chronic condition, I am extremely grateful for the care I am currently receiving and highly optimistic the ongoing research may yield a cure in near horizon
Coming to terms with a new reality and becoming a cancer patient advocate
Where to next? I would ask myself. As a cancer survivor what really gets me out of bed each day is the gratification I have for still being alive and my determination to live. There are highs and low especially when dealing with the symptoms and responding adversely to the treatment. I had been given a second chance to live. Since my diagnosis, I have come to terms with my new reality, making necessary adjustments to cope with the disease in order to make living much easier. I am going to live my life with a chronic disease that increased my mortality risk and would have to take precautions so as to not worsen my condition given that I am also immune compromised. The treatment I receive is my lifeline for without it I would not be here. I am thankful for having access to the best care possible and the ongoing research that gives me hope for better therapy and a potential cure. I have no intention of letting the disease wear me down emotionally. I now see life with much more clarity and have a clear sense of perspective. I had to rewrite my bucket list and set realistic goals and expectations. I intend to have as much fun living and spend more time with my family and friends. The possibility of moving back permanently to Kenya was not an option due to the limited cancer care resources available. As I sought to understand the cancer care landscape in Kenya and in the rest of the content I soon came to realize the situation was dire given there are few cancer care resources available. I am now a cancer patient advocate and have embarked on advocating for the right to cancer care for all in Africa.
Majority of the African countries have limited to no cancer care infrastructure and suffer from acute skilled human resource deficiencies to cater for those in need of cancer treatment. Most cancer cases in Africa are often presented at health facilities when it’s a late diagnosis and not much can be done.
Often many who are ill with cancer do not know if what ails them is cancer due to lack of access to health care facilities. Even if they are able to access a health care facility and receive a diagnosis a majority are unable to access treatment given the exorbitant costs involved. The required treatment may also not be available locally. The default option for most diagnosed with disease is end of life care. That too is not often available. Pain medication such as opioids analgesics are not widely accessible, hence a majority of the cancer victims have to endure undignified, painful and agonizing end of life experience.
Despite the limited reliable data available, there has been a steady rise both in cancer incidence and mortality rates in Africa. Provision of services for the prevention and treatment of cancer has had a low priority amongst policy makers, governments, funding and development organizations which continue to focus more on competing communicable diseases burden. There are also challenges with access to resources that can adequately biopsy the different cancer diseases. As a result we do not have a true account of the extent and trends of cancer in Africa. Factors that have contributed to the epidemiological shift in the burden of cancer in Africa is due to an array of factors. People are living longer in Africa. Cancer is an aging disease as the median age for diagnosis with cancer in the west is 66 years of age. Other factors contributing to the shift include environmental pollution and behavioral change given the burgeoning middle class segment of the population who lead sedentary life styles with limited physical activities, unhealthy diets, and tobacco use. Cancer is multifactorial and in Africa there are types of cancers that are also largely attributed to infectious agents such as the Burkitts Lymphoma epstein barr virus, Kaposi Sarcoma human herpes virus 8 and cervical cancer human papillomavirus.
We at Cancer Africa the non-profit organization I founded following my diagnosis are seeking to create awareness of cancer in Africa and contribute to the efforts that seek to place cancer as a leading public health priority in the continent. Our inaugural project is to develop an inventory on the available cancer care capacity in all the fifty four countries in Africa. We anticipate that the study will inform policy makers and funders and provide a baseline that indicates how Africa’s cancer care needs to expand. I feel strongly that efforts to prioritize cancer in Africa should include the development of robust policies and institutions that will address local challenges such as the training of cancer care specialists, development of cancer care infrastructure that will provide quality diagnosis and treatment and support scientific research to better understand the cancer trends within the continent.
Cancer is a complex group of over one hundred diseases of which two thirds causes and risk factors are not well understood. I would like to see Africa join in the research efforts especially with regards to cancer diseases that are more endemic to the continent. Here in the United States and in other developed countries what I have seen the debate has been focused more on the increase in research and research funding that enable physicians and scientists to better understand the cancer causes, prevention and to develop better treatment therapies and cures. In Africa the movement has been focused more on cancer prevention. There has been limited attention given to access to treatment and very little focus on cancer research. Those of us diagnosed with cancers that cannot be cured vest our hopes on ongoing cancer research to yield better treatment therapies that will add days and even years to our lives and if lucky benefit from a discovered cure.
Solving our cancer challenges in Africa will not benefit from a pedestrian approach. The challenge brought about by cancer in Africa requires commitment and not just promises from the African governments and must be commitment supported by action. Cancer is not new to Africa and has long history in Africa. The discovery of the human remains of a male young adult individual with metastatic carcinoma at an archaeological site in Amara West in northern Sudan from the century 1200BC has contributed significantly to our understanding the history of cancer. Clearly this is a disease that is not foreign to Africa and it is high time we took appropriate action to mitigate the risks and challenges it will yield.