What will tomorrow bring
Last year, on a cool February afternoon, I wandered down to UBC Wreck Beach in Vancouver, Canada to take a self-portrait for the 365 Days flickr group. Photography puts my mind at ease and I needed to counteract the stress that was overwhelming me. I have Multiple Myeloma, a treatable, but incurable blood cancer. In less than 24 hours, I was scheduled to start at least 6 cycles (30 weeks) of chemo treatment.
I was worried. I was scared. I felt alone.
As I listened to the rhythm of the waters hitting the shore, my thoughts turned to the uncertain future that lay ahead. I wondered:
Will the chemo lower my cancer levels?
Can I handle the side effects?
Diagnosis. Treatment. Hope.
One day I was feeling tired, unfocused, and unable to think clearly. I tried to tough it out. I just need more sleep, I reasoned. As I continued to feel different, I knew something was inherently wrong, but couldn’t figure out what. In late December, after many months of inaction, I booked an appointment with my local clinic. The Doctor listened to my concerns and ordered a blood test as a precautionary measure. When I didn’t get an immediate callback, I thought I must have overreacted. In early January I was contacted for further tests, which revealed I had anemia. Anemia is a condition where there aren’t enough red blood cells to carry oxygen through the body. After more tests I learned that anemia was a symptom of Multiple Myeloma. Hearing You have Multiple Myeloma, didn’t register until I heard the words, a blood cancer.
Life. Changing. Moment.
Multiple Myeloma is a cancer of the plasma cells, white blood cells in the bone marrow, usually responsible for producing antibodies to help fight infections. It is estimated that 2 600 Canadians and 24 000 Americans will be diagnosed in 2014. Becoming a new patient was eye-opening. I didn’t know anyone with Multiple Myeloma. I felt lost and scared. Multiple Myeloma is a rare disease, only 1% of all cancers. I lay awake at night wondering why this was happening to me. I wanted to go back in time and undo whatever I had done to catch cancer. I became focused on getting rid of this terminal illness. Didn’t know or care about survival rates, because this was just an asterisk in my life adventures. My plan was to do the necessary tests, sail through treatment, get cured. End of story.
The first appointment with my Hematologist, a Specialist who cares for patients with blood cell diseases, helped ease my mind and I left with a clearer understanding of the road ahead. The next morning I arrived for my bone marrow biopsy. The procedure involves drilling into the hip bone to extract bone marrow stem cells. I purposely refused to learn anything about the operation ahead of time. Some might say I was being ignorant, but I was quite freaked out with everything. The word biopsy sounded painful and I had no desire to increase my stress level reading Wikipedia. Yes, it was rough. Yes, I cried. The biopsy provided valuable information. It revealed I had high immuniglobulin (igG) levels, due to increased amounts of abnormal plasma (myeloma) cells in my bone marrow. Time for action.
I had done due diligence researching possible side effects from high-dose chemo (e.g. hair falls out, lack of energy), but I neglected to explore potential issues related to the pre-chemo drugs. In hindsight, that was a mistake. My Hematologist prescribed dexamethasone, an oral synthetic steroid, prior to my Bone Marrow Transplant (BMT). A BMT is also called a stem cell transplant. In high doses, dexamethasone can reduce the number of myeloma cells in the bloodstream. It is beneficial for myeloma treatment because of how it affects the immune system. Dexamethasone can prevent white blood cells from reaching places where myeloma cells are causing problems, reducing swelling or inflammation in those areas. This action can alleviate the associated pressure in the bone marrow responsible for bone pain, a symptom known to Multiple Myeloma patients.
I hated how dexamethasone made me look and feel. My face became chubby, my pants no longer fit, I was always hungry, and suffered mood swings. The extra weight seems to slow me down and affected my self-esteem. I just wasn’t used to such dramatic changes to my physical and mental state. All I wanted was to look normal, to feel ok, but that wasn’t going to happen.
Hello, new life.
After two months Disodium pamidronate, a bisphosphonate designed to help bones remain strong, was added as an intravenous injection (IV) to my pre-BMT regiment. Myeloma cells can eat away at bone marrow resulting in bone damage, so bisphosphonates are used to slow down that process and prevent bones from weakening (known as osteoporosis). One morning I awoke to eyes that were red and watery. I was unable to look at any light source without intense pain. Even my cell phone was too bright. I was referred to a Glaucoma Specialist who diagnosed me with ocular inflammation. That is inflammation of the uvea, the middle layer of the eye. My eye drops treatment caused unexpected complications. As the medication and the dexamethasone were both steroids, they may have contributed to my increased intraocular (eye) pressure. Concerns arose that this might lead to vision loss from glaucoma. Fortunately, I was successfully treated. My inflammation was cured and my eye pressure returned to normal levels.
I was assigned a Case Coordinator RN, who maintained a constructive dialog through emails and phone calls providing reassurances, answering questions, and keeping me informed during the BMT process. A battery of tests and procedures were scheduled in the weeks prior to the BMT to ensure I was healthy enough to tolerate treatment. If any irregularities were discovered, adjustments could be made to the chemo levels as needed. I was provided with a digital thermometer since I needed to monitor my temperature in case of fever. The patient education manual provided reassuring information about each procedure and why it was necessary. It felt like I was preparing to be an Astronaut — Ground Control to Major Tom.
The treatment process began with a Radionuclide Ventriculogram (RVG) test to measure how well my heart performed. Some radioactive material was injected into my blood and then tracked as it pumped through my heart, while a special machine took photographs of my chest. This was followed by a Pulmonary Function Test (PMT). A PMT, also called a lung function test, is a series of tests to determine how much air can be held in the lungs and how well air moves out of the lungs.
The next day was action packed with an electrocardiogram, blood test, Skeletal Survey, and chest x-ray. The electrocardiogram (ECG or EKG) is a test that records the electrical activity of the heart. Electrodes were placed on my chest, arms, and legs to determine whether any problems existed. The Skeletal Survey (bone survey) generates a series of x-rays of the major bones in the body. As a Multiple Myeloma patient, a Skeletal Survey is useful for detecting bone lesions and provides a baseline for measuring treatment response. The chest x-ray took an image of the internal structures inside my chest (e.g. heart and lungs).
A few days later, I completed a creatinine clearance test (a 24-hour urine volume test combined with a blood sample) to see if my kidneys functioned normally. Creatinine is a waste product of creatine, part of the muscle tissue. As creatinine is produced, the kidneys continuously filter it into the urine from the blood. If there are elevated creatinine levels in the blood, then less creatinine is being released into the urine, an indication that the kidneys are functioning abnormally. Renal failure (also called Myeloma Kidney) is a symptom of Multiple Myeloma, present in 20–40% of all patients at diagnosis.
The following week I received seven consecutive days of granulocyte-colony stimulating factor (G-CSF) injections under my skin. G-CSF is also known as Neupogen or Filgrastim. Although I could have done the shoulder injections myself, I preferred to have a nurse administer them at my local clinic. G-CSF is a special type of growth factor that stimulates the production of hematopoietic stem cells, moving them from the bone marrow into the blood for later collection. Stem cells are immature cells in the bone marrow that turn into blood cells (red, white, or platelets). There are less than 1% of them in the bone marrow. I was fortunate not to experience bone pains or chills during this time as is common during treatment. However, I did feel fatigued at the end.
On the 8th day my stem cells were collected. The harvesting process, also called peripheral blood stem cell collection, normally takes 6–8 hours. I was told ahead of time to eat breakfast, but to limit my drinking as bathroom breaks wouldn’t be possible. I sat on a hospital bed with a straight catheter inserted into a vein in my right arm as stem cells from my peripheral (circulating) blood flowed into a cell separator machine. This process is known as apheresis. The machine spun around my blood separating it into four parts: red blood cells, blood plasma, white blood cells, and blood platelets. The white blood cells section containing the stem cells were saved. The remaining blood was returned to my body via a short thin tube (cannula) connected to my left arm. I was warned not to bend my right arm during the procedure. After the stem cells were counted and cryopreserved (frozen), there were enough for two transplants. As a second appointment the next day was no longer necessary, it was cancelled.
The next week I was combing my hair when I noticed more of it attached to my hair pick than was normal. I ran to the bathroom mirror and found I could just pull out clumps of afro from my head. I was a bit shocked as I didn’t know that hair loss was possible before chemo, however it is a potential side effect of G-CSF. I had always enjoyed my trips to the barber for the stimulating conversation I overheard and sometimes engaged in. Cancer changes lives in unexpected ways, this was just one. There was no time to dwell on it though, I had to accept the new me and move on. I took a deep breath and shaved my head.
Time to rock the bald look.
A month later, I arrived with an empty stomach ready for my Hickman Line operation. A Hickman Line Catheter is a semi-permanent intravenous device used for drawing blood, receiving chemo, or getting medication. After a local anesthetic, an insertion was made on my neck and on my left breast to connect the catheter to a jugular vein in my chest. It felt a little weird having these tubes sticking out of my chest, but they weren’t noticeable under clothing and made blood tests much easier. Throughout my treatment, I was thankful to the nurses that always checked the status of my dressing, changing it as needed to reduce the risk of infection.
The next day I returned for my high-dose chemo (melphalan) treatment. It was a full 8 hour day and I received IV fluid and premeds prior to chemo. The following day my thawed stem cells were returned via my Hickman Line. Over the next few weeks I had numerous blood tests and IV medication and felt quite weak due to my reduced immune system. Walking from my bed to the cancer car was incredibly taxing. I slept alot to conserve my strength. Although the transplant lowered my cancer levels, I needed a second one the following year to try and reduce them more.
I had another bone marrow biopsy prior to a second Hickman Line operation. These preceded the high-dose chemo and transplant of my remaining stem cells. Everything went well without any major side effects. Although my levels dropped, the BMT left my cancer in partial remission. Following a short period of stability, my cancer levels began to rise. I felt a bit defeated as I realized that Multiple Myeloma would always be a part of me.
That time I spent 12 days in hospital
Being a cancer patient has taught me to expect the unexpected out of life. When something unusual happens I focus on remaining calm and try to maintain a sense of humour. Staying positive helps me handle anything. As my strength gradually returned, I knew I couldn’t dwell endlessly on treatment failures. I had to focus on the positive — my cancer levels were low. Being unhappy and stressed didn’t do myself any favours.
I directed my energy towards creative activities. I self-taught myself photography — improving through self-portraits, photowalks, conversations with photographers, and attending events around town. I became immersed in social media and online communication, going to tech conferences, meetups, and building friendships on and offline. I felt alive and renewed.
After some time, in which my cancer levels has risen significantly, my Hematologist recommended I join a clinical trial for Revlimid (lenalidomide), an oral chemo drug. Revlimid is given to people that have at least one prior therapy (e.g. BMT). As a patient, getting into a clinical trial rocked. It meant I fit the necessary criteria for access to a drug in a controlled research study not yet approved (re: funded) by my province. I was placed on maintenance therapy. I would receive Revlimid for an indefinite period of time while being regularly monitored. As long as the drug kept my cancer levels stable, I expected to remain in the trial. Dexamethasone accompanied the Revlimid treatment (called Revlimid-dex), as clinical trial studies showed the combination to be more effective than each alone. Taking the dexamethasone resulted in weight gain and a puffy face, similar to my previous experiences.
When something is wrong with my body, I’m always trying to deny it, thinking if I hold off a few hours, a day, or even two, I’ll get better. I refuse to believe that it is anything serious, instead treating it as a temporary inconvenience, like the hiccups, that couldn’t possible require a medical response. In that moment, I’m blind to how sick I really am.
On a cool Friday evening in December, after an extended time on chemo treatment, my world turned upside down. It began with intense headaches coupled with a numbness in my tongue and vision difficulties. Wherever I looked, everything was masked in a white translucent haze. My vision irregularities persisted sporadically through the weekend and I didn’t know why. I thought the dexamethasone being a steroid had caused my eye pressure to spike. On the following Monday morning I set up an emergency appointment with my Glaucoma Specialist. Monday was a surgery day so a special spot was created for me early Tuesday morning. I tried to remain calm throughout the day, telling myself that everything would be alright. The maintenance therapy was keeping my cancer levels low and stable. Life was good.
When I arrived on Tuesday, I was given an ocular tonometry to determine my eye pressure level. The ocular tonometer showed my levels as normal, so I was sent to have a visual field test. This would determine if there were any defects in my peripheral or central visual field. I sat in a chair in front of a visual field machine with my gaze fixed on a central light. For about 15 minutes dots of varying intensity blinked and moved across my visual field. When I saw a light, I simply had to acknowledge it by pressing a clicker. My right eye was tested while the left was covered with an eye patch. As I was switching the eye patch to get my left eye tested I had a strange, sinking feeling in my stomach. I thought I was going to throw up. The attendant left to bring me some water, so there weren’t any witnesses to what happened next.
When I regained consciousness, someone was placing a pillow under my head as I lay under the table. My lip was bruised and bleeding from banging my face on the front of the field test machine. When I tried to stand up, I was cautioned against it. The field test attendant stated that the paramedics were on their way to take me to the hospital as a precautionary measure. At the ER, I was initially misdiagnosed with sensitivity to the flashing lights from the visual field test.
Thankfully my amazing Glaucoma Specialist, who continually seeks updates on my health during our appointments, insisted that something more serious was going on. Blood tests and a CT scan revealed I had suffered an ischemic stroke in the left hemisphere of my primary visual cortex. An ischemic stroke is caused by blood clots in blood vessels blocking oxygen-rich blood from reaching a part of my brain. In my case, the area responsible for vision. The stroke was triggered by Thrombotic thrombocytopenic purpura (TTP).
It wasn’t even noon and my day just got very serious.
TTP is a rare blood disorder characterized by blood clots (thombi) that form in small blood vessels around the body in an abnormal fashion. As the platelets clump together, fewer are available in the blood to help with clotting and prevent bleeding throughout the body. This results in a low platelet count (thrombocytopenia). Since oxygen is prevented from reaching major organs (e.g. brain, kidneys, heart), organ damage may occur. TTP symptoms include strokes, headaches, and bleeding problems. There are 3 types: hereditary (inherited), idiopathic (cause unknown), and Secondary TTP. Secondary TTP occurs when the patient also has a predisposing factor such as a BMT, chemo treatment, or cancer. There are 3–4 cases per million people diagnosed each year. In British Columbia (pop. 4.6 million), TTP occurs only 4–5 times a year.
As I waited in the ER to be admitted, a neurologist visited me with six residents to provide a teaching moment. My vision had become a bit messed up due to neurological damage. When I looked at someone’s face, their left eye appeared to be completely hollow. I described this to the neurologist who confirmed that it was consistent with what the CT scan showed, I had a stroke in my visual cortex. With the residents in a semi-circle watching as I performed a few manual vision tests, it felt like I was in an old episode of ER.
I was fortunate to pass out inside a medical facility rather than at home. TTP has a 95% mortality rate without plasma exchange treatment. When I was tested in the ER, my blood platelet levels were 4. The normal range is between 150–400. This explained why my bruised lip and bumps on my head weren’t healing quickly, there were too few platelets to support coagulation. The prognosis is very poor for active cancer patients diagnosed with TTP. Ineffective plasma exchange treatment may be due to the complexity of their disease or the delay in diagnosis. It is unknown why TTP develops in cancer patients, as it is quite rare. If caught quickly, the chance of survival may improve.
The seriousness of the diagnosis meant that I was forbidden from leaving the hospital to get things necessary for an extended hospital stay (e.g. clothes, phone charger). Instead I was immediately admitted and given a wristband making me an official patient — a t-shirt would have been nice too. My first overnight experience in a hospital was spent in an ER bed, while space was arranged for me upstairs. When I looked in the mirror as I was brushing my teeth, my bruised lip still looked pretty awful.
That night, I recalled the array of circumstances that brought me to the ER. Each day you assume you’ll fall asleep in your own bed surrounded by familiarities. But life sometimes throws you curveballs. Here I was lying in a foreign bed, with strange tubes sticking out of my chest, groggy from my first plasma exchange, and diagnosed with a disorder I’d never heard of.
I just wanted to go home.
TTP treatment involved being hooked up to a machine that through an exchange transfusion uses an apheresis device to replace bad blood plasma with donor blood plasma. It was described to me as similar to an oil change. Before this happened, I actually had no idea donor blood plasma existed. A central venous catheter (central line) was attached to a vein inside my chest to enable plasma exchange, to administer medication, and to draw blood. Through daily plasma exchanges my blood platelet counts rose. These exchanges were then stopped to help the Hematology team determine whether my blood platelet counts could increase to normal levels by themselves. Thankfully, they did.
In the beginning, it wasn’t medically safe for me to leave the hospital. To get exercise and to help clear my mind, I liked to walk around at night and explore. Hospitals can be lonely places. I felt fortunate to have friends bring me drinks, food to eat (the homemade cookies were yummy), TV shows to watch, and be a friendly face when needed. Their visits helped lift my spirits and contributed to my overall health improvement. Daily I marvelled at how hard the medical staff worked to take care of me. I enjoyed the friendly personalities and daily professionalism of everyone I interacted with.
I was treated by a Hematology team for my TTP (separate from my personal Hematologist for Multiple Myeloma), while a Neurology team worked to determine the extent of damage from the stroke to my brain using manual vision tests, an MRI, a CT scan, and an ECG. My final day in hospital was unexpected. As the most recent blood test showed my platelet counts decreasing, it looked like my health could be regressing. If that happened again, I was told the treatment cycle might need to be repeated, which would extend my hospital stay significantly. When a Hematologist appeared at my door, I braced myself for bad news. Instead with a quick tug, my central line was removed, and I was officially discharged.
Lying in my own bed that night was a bit emotional. I was happy to be home.
As part of my post-TTP treatment, I was required to see a neuro-opthamologist . That is an eye doctor that specializes in diseases related to visual irregularities of the nervous system. They would determine the extent of damage to my visual cortex and assess whether my vision could improve. Over a five month period, I learned that the neurological damage was only temporary and my eyesight returned to normal. Due to the possibility of TTP relapse, I can never operate a motorized vehicle again. Although this has limited my photo adventures to places accessible by public transportation, I’m grateful not to have any permanent damage from my TTP treatment.
My TTP diagnosis meant that I could no longer participate in the Revlimid clinical trial, even though the actual cause of the TTP remained unknown (Revlimid, dexamethasone, a symptom of Multiple Myeloma, or just random occurrence). During a subsequent appointment with my Hematologist, we decided to hold off on future chemo until it was absolutely necessary. I found the extended time on maintenance therapy to be challenging and just needed to give my body a break.
I’ve learned that having cancer is like living on a hockey stick. As a cancer patient, I’m either located on the shaft or the blade and my actual position adjusts based on the severity of my disease at that time. Post-TTP, I knew that although my cancer levels were fairly stable (shaft), they would eventually spike (blade). This realization changed my perspective about my disease. I now saw my life in binary terms — states of 1 and 0. 1 = chemo and 0 = the absence of chemo. The months without treatment, I labelled downtime, the absence of chemo period, or the in-between time. A temporary, fleeting state that never lasts long enough.
How SuperBetter improved my health
During my previous downtime following my Bone Marrow Transplants, I enhanced my creativity with self-portraits shared on the 365 Days flickr group. As the months passed, not having to be on chemo treatment felt liberating, although my desire to take self-portraits hadn’t returned. I needed a recharge and didn’t know how to break myself out of the rut I was in. In the Spring of 2012, I unexpectedly received a SuperBetter all-star invitation. SuperBetter is an alternate reality game designed to build personal resilience to difficult challenges such as cancer. I called myself “Phillip the Cancer Conductor” and noted that I would control my cancer levels through daily creative self-portraits until September 1st. I began taking self-portraits again and in addition to the SuperBetter project, I immediately jumped into a new 365 Days flickr project. Often I would work on a particular idea in my mind throughout the day, and then create the image that evening.
My cancer levels had been steadily rising. Every four months, I had a blood test followed by a stressful week waiting to learn the results during my Hematologist appointment. The day of an appointment I was always a wreck as I focused on the worst-case scenario — chemo treatment forthcoming. On Day 89 of the SuperBetter project, I once again had my quarterly appointment. This time the news was positive. My cancer levels had actually decreased. Chemo treatment would not be in my immediate future. Although, my Hematologist was unclear as to why this had happened, I attributed the success to SuperBetter. The game provided me with a sense of purpose where I could quantitatively monitor my progression (the taking and uploading of creative self-portraits) and it provided qualitative value as I was able to observe steady improvement in my photography over time.
My 365 Days flickr group participation gave me ongoing support and positive feedback about my photographs, especially when a photo had significant meaning (e.g. lowering of my cancer levels). The self-portraits provided a physical and mental benefit. It is easy to be discouraged and to remain hidden from the world, when each day bring you closer to chemo treatment. I felt motivated to go outside and take photographs. To be inspired. To think creatively.
Time for chemo treatment again
The Summer sun during the magic hour provided a sense of solitude as I explored my neighbourhood carrying my tripod and camera. I was at peace, alone with my thoughts, doing something that I loved. As much as I enjoyed photography, I could feel the cancer cells multiplying inside my blood, weighing me down. A September Hematologist appointment confirmed my suspicions, my cancer levels had spiked. That news caused me to shift from an if treatment mindset to a when treatment mindset. I realized I was being presented with an important opportunity that couldn’t be ignored. With my social media background and love of photography, I felt compelled to help educate others about Multiple Myeloma during my upcoming treatment.
Symptoms brought on by my anemia and high cancer levels began to manifest themselves in my daily life. I had memory failures trying to recall the names of good friends, concentration on simple tasks became increasingly challenging, I experienced migraines, and I lost time. I acquired a heightened sensitivity to noise, as overheard conversations sounded like jackhammers drilling into my head. My body seemed be shutting down as I unsuccessfully fought fatigue. When a bad cold sidelined me for weeks, I didn’t know if it was an infection or the product of stress. I couldn’t stop thinking about how the next time my cancer levels spiked, treatment would be necessary. As each day passed following my October blood test without a call from my Hematologist, I felt a temporary sense of relief.
For the next few months, my cancer levels continued to rise and I knew that the inevitable was approaching. In February I received a call from my Hematologist telling me to come in for an appointment. My cancer levels had spiked again. After our meeting, I focused on getting better. I would take my medication, let them do their thing, and hopefully my cancer levels would drop.
Although my last chemo treatment was halted due to TTP, I remained hopeful that nothing so dramatic would happen this time. My chemo was called Velcade (bortezomib) and it would be administered weekly through in-hospital injections as an outpatient. There would be six cycles of Velcade to start, each lasting five weeks (4 weeks on, 1 week off). Each week I would also take 10 dexamethasone (an oral steroid) pills and 10 cyclophosphamide (chemo) pills to enhance the effectiveness of the Velcade. Prior to each cycle I was given a prescription to pick up my medication from the BC Cancer Agency pharmacy. My Hematologist recommended daily Valtrex (an anti-viral pill) from the local pharmacy to ward off infection or shingles.
How I spent my first day of treatment
My first day of treatment began with Valtrex, cyclophosphamide, and dexamethasone pills during breakfast. On the bus to the hospital, as each stop brought me closer to the cancer ward, I just stared out the window, mentally prepared myself for the long road ahead. There is a particular routine patients follow when arriving for treatment. My name was displayed on a whiteboard next to the time of my weekly sessions. By checking this off, I alerted the nurse assigned to me that I had arrived, so that my chemo could be ordered from the BC Cancer Agency pharmacy. Velcade is an expensive drug and the amount given is calculated based on my body surface area (height and weight), so it isn’t mixed until it is confirmed I would be there. My name was written on a post-it note attached to a clipboard containing a self-report sheet. I took the clipboard to a room with a free chair, placed my post-it note on the wall beside the door (to pinpoint where I was), and used a mobile vital signs monitor to assess and record my basic body functions (blood pressure, temperature, pulse, and oxygen saturation) on the sheet.
A nurse came for a blood test and while waiting for the results, my Hematologist stopped by to check up on me and answer any last minute questions. A short time later, I received a small piece of paper with my Hematology profile (counts) that listed four measures (white blood cells, hemoglobin, blood platelets, neutrophils). These are indicators over time of my body’s response to treatment. The realities of what chemo actually is — poison — was made abundantly clear when the nurse walked into my room wearing protective clothing and a mask. This was not for protection from me. Cancer is not contagious. The safeguards were against accidental exposure to the very toxins I needed to get better. As the two needles (1.4ml and 1.5ml) entered my stomach fat, I turned my head.
In silence I drifted away to a happier place.
Four weeks that changed my life
The next day I took my Daily 365 flickr group photo at UBC Wreck Beach. I was pleased with my self-portrait and excited to go home and share it online. As I started to walk up the stairs, I began to experience tightness and sharp pains in my back and side. At home, I fell onto my bed and tried unsuccessfully to fall asleep. That night was one of the worst in recent memory. The slightest movement caused intense pain in my side, back, and stomach and taking aspirin or antacid didn’t help.
After a couple of days of being bedridden, the pain lessened a bit and I was able to make a previously scheduled Hematologist appointment, using the cancer car volunteer service. Usually I would interact with the driver, but this time I was very quiet. All my energy was focused on controlling the pain with my mind. As I was feeling a bit better that day, I didn’t see the need to request a prescription for the pain. Over the next few days, the pain just disappeared and my second chemo treatment went according to schedule. Maybe I should have questioned why my pain went away so abruptly. Instead, I focused on the positive — being pain-free.
The next day, I was wandering around without a care in the world when the pain re-emerged, completely blindsiding me. And Pain 2 was bigger and badder than the original. Now I was really worried. I wondered whether this might be chronic. I slowly made my way to an outside chair to collapse into. I knew I needed immediate medical attention. I contacted the cancer ward and told them I had an emergency and was coming in. Unfortunately, I didn’t know anyone that could help me with transportation. A taxi was too expensive. I couldn’t afford a data plan on my Blackberry, so I was unable to reach out on social media for help. I sat there for 30 minutes, frozen in my chair, debating the merits of calling 911.
During your darkest hour, when hope seems lost, there will always be someone to pull you into the light. Unexpectedly, a friend texted me to ask how everything was going with my treatment. I explained my situation and they immediately came to my aid, finding someone willing to drive me to the hospital. Without their help, I don’t know what I would have done. The on-call Hematologist prescribed codeine. It was ineffective and I remained in severe pain. During my next chemo appointment my Hematologist gave me t3 (Tylenol with Codeine #3), but still my discomfort remained. A week later I was upgraded to hydromorphone, which made the pain manageable. I could still feel tightness and walked around in a deliberate fashion. This was disconcerting. It was unclear whether my pain was actually being suppressed by the hydromorphone, or whether I was improving on my own. If I stopped taking the painkillers, would the pain flare up again? Was this the new normal? I just didn’t know whether this was a chemo side effect, cancer symptom, or simply bad luck.
The weeks that pain consumed me, left me feeling abandoned. I was trapped in a well, without a way out. Simply adjusting my leg or arm caused a sharp pain or charlie-horse tightness in my side or back. Hiccups, a side effect of dexamethasone, felt like explosions in my body. I couldn’t stand up straight. I would fall out of bed onto the floor and then hunched over walk to the bathroom, physically moving one leg in front of the other with my arms. Some days I only left my bed to use the bathroom. I spent my time binge-watching TV on my laptop, trying to lie as still as possible, learning about the weather outside my window from Google.
I was losing weight as I couldn’t handle the pain of crawling to the kitchen for food. The reality is that when opening the fridge is extremely painful, you just don’t do it. When the cupboard is too high to reach for food, you go without that day. I was grateful that a friend dropped by with groceries that I kept beside my bed and in my lower cupboards. Another time a friend surprised me with homemade chicken fettuccine (my favourite), which was especially appreciated as I was out of food and feeling weak. Those acts of kindness will not be forgotten.
My Hematologist was uncertain why the pain was occurring, although it seemed to coincide with the beginning of my chemo treatment. A chest x-ray didn’t reveal anything conclusive, so a CT scan was ordered of my thoracic spine. It took about 5 weeks for me to be seen. By that time the pain had stopped completely and I no longer needed hydromorphone.
At my CT scan appointment, a technician tried to set an IV in my arm for the contrast dye necessary to help show my blood flow in the x-ray images. Even with two different technicians and the repeated warming up of my arms with towels, it was impossible to find a vein. So they brought someone over, whose specific skill in the hospital is to solve problem IVs in patients when repeated attempts have failed. I called them “The Wolf”. Thankfully, they started my IV promptly and I was led into a room with the CT machine. While I lay on the bench with my arms extended behind my head, the contrast dye flowed into my veins. The machine then took photos of my thoracic spine while I stayed completely still. The whole process took about 90 minutes and within 5 days my Hematologist received the images.
The CT scan revealed that myeloma cells had collected in the T7 vertebrae of my thoracic spine and were causing havoc. They were believed to be responsible for the severe pain that had left me bedridden. Radiation would be necessary to remove them, to help prevent the pain from returning. About a month later, I headed to the BC Cancer Agency and sat in a waiting room as I mentally prepared myself for radiation.
The Radiologist instead informed me that I would not be receiving radiation that day. The severe pain I had experienced was the result of my T7 vertebrae collapsing because of the cancerous cells inside the bone marrow. A still-circular vertebrae that causes pain due to cancerous cells inside can be treated with chemo or radiation (targeted chemo). Then cement is added to stabilize the walls of the vertebrae and prevent it from collapsing in the future. My T7 vertebrae was now flat and stable, which was why the pain stopped. So cement couldn’t be added to fix it and make it whole again. If another vertebrae was collapsing in the future, I would be able to receive radiation to kill the cancer cells and stop the pain. As the Velcade chemo was already killing cancer cells in my body everywhere (including in my thoracic spine), additional radiation directed specifically at the T7 vertebrae was perceived to be overkill. After the meeting I was in a bit of a shock that I wouldn’t get radiation and nervous about my vertebrae problems returning.
Buddy, can you spare a friend?
With the worst behind me, I settled into my routine as I rolled through each five week cycle of pills and chemo injections. It felt good to finish my 365 Days flickr group project in the summer. I always enjoyed the opportunities to explore with my camera. Some days dealing with the side effects of chemo were better than others. Chemo really messes with your mind and body. I experienced chemo brain and found that I didn’t recognize people that seemed to know me. There were times when I would curl up wishing the stomach pains would go away. Or feeling sad about how the injections left temporary scars on my stomach. I became much more introverted spending so much time alone, although I felt comfortable lying in bed immersed in silence. Conversation became exhausting and I found it difficult to attract others to visit me. I craved the company of anyone willing to visit me.
I wondered: How to do convince someone to spend time with you when you’re in bad sorts from chemo side effects or cancer symptoms? I thought the world was passing me by. As I followed the social events and activities of friends through photos and status updates online, I felt forgotten, unable to participate in the face-to-face interactions necessary for maintaining friendships.
On an autumn day in November, my chemo treatment ended at 8 cycles (40 weeks). Two additional cycles were added at the end and they had a positive effect. My cancer went into complete remission on November 23, 2013.
The value of social media
I wanted to properly document my chemo treatment and felt it best to postpone Day 1 by a week to better map out how I would engage audiences on the various social media platforms. My blog was used for photoessays that shared my experiences particular to that cycle (e.g. Cycle 6 Week 3 In Photos), to share discrete events (e.g. getting a CT scan), or to summarize my overall feelings at that moment (e.g. Cycle 1 Chemo Treatment: Worse 4 weeks of my life). My blog was a platform for sharing flickr photos, YouTube videos, and Soundcloud audio supplemented by text, similar to my Pinterest board. Each blogpost publication was announced to my followers on twitter.
I didn’t know who I would reach, but I hoped that someone in need, whether patient, caregiver, family member, or friend would benefit from my personal story. I wanted my photos to convey emotion (e.g. the angst of waiting for my first chemo injection), to express creativity (e.g. arranging my pills to represent the number of weeks treated), or to provide information that ordinary might not be known (e.g. what chemo injections looks like). My treatment was a solo affair and I was happy whenever I received feedback online. It reminded me that I wasn’t living in a bubble, that I was actually providing value to someone else. Each fav, comment, and repin notification felt like a virtual high five, a trumpet blast, and happy dance all rolled into one.
Documenting my treatment made me more proactive in discussing medical information to ensure I could articulate correctly a procedure on my blog or in the description of a flickr photo. This lead to engaging conversation with my Hematologist about my progress, being educated about chemo history from nurses, or being informed about the thoracic spine from a Radiologist. The absence of social media content during my weeks of severe pain should be noted. No self-portraits exist during that time as it wasn’t possible to pick up my camera or tripod off the floor. I was simply too weak.
I am a Multiple Myeloma patient
This quest for medical knowledge, this desire to ask questions related to my health and treatment was a fairly new phenomenon for me. I had always thought of my cancer as a side project, something I had, but wasn’t really focused on too much. That didn’t mean I wasn’t affected by it — both cancer symptoms and chemo side effects have left their mark. I just dealt with everything in my own way. Cancer was what I had, but it didn’t define me. It was just one aspect of my identity, like having brown eyes. I didn’t know about or participate in healthcare or disease communities online or in my city, because I just didn’t feel I needed to. I really didn’t know what existed out there anyways, if I needed support I could visit a friend, if I wanted to know more about Multiple Myeloma, I could Google it, if I had an idea on how my healthcare could be improved, I could talk to my Hematologist. I was happy just being me.
Everything changed during my first month of chemo treatment. It was a moment of enlightenment that emerged while I was feeling isolated, alone, trapped in my bed, and unsure if the pain that was overwhelming me would ever stop. I realized that I couldn’t get by on my own. I needed community support. I needed social interaction with patients I could identify with. I needed to become more engaged about my health.
Using Twitter Search I discovered healthcare hashtag communities, build around diseases (e.g. #mmsm — Multiple Myeloma), conferences (e.g. #medx — Stanford Med X Conference), and tweetchats (e.g. #medx — Stanford Med X Live, #hcsmca — Healthcare Social Media Canada). I discovered who epatients were — patients that are empowered and engaged about their health and the health care system. The Stanford University Medicine X community became a second home online, a place where I was inspired and motivated by the dynamic personalities using #medx to share knowledge on twitter. I felt a commonality with the patients there. I welcomed the opportunity Tuesdays and Thursdays to watch their weekly broadcasts + tweetchat as I learned about emerging technology and the future of health care from entrepreneurs, health care professionals, and patients.
With each day, I felt motivated to better myself as a patient through educating myself about my health and becoming more aware about healthcare concerns faced by other patients. I became more knowledgeable about the role emerging tech could play in the lives of patients. I moved from being a passive patient to an engaged one. I found my identity.
Complete remission — a new reality
In December, at my first post-treatment Hematologist appointment, I understood my cancer to be in partial remission, meaning cancer hadn’t disappeared completely from my blood. Four months later, I was feeling particularly sad for my scheduled appoinment. I had seen my blood test results online the week before and perceived my cancer levels to be already increasing (my igG protein levels were 7.7 in Feb and 8.9 in March). The igG number had always been the marker used for measuring my cancer, I thought that anything above zero meant cancer was present in my blood. What really bothered me was this feeling of helplessness I had. I had been trying to live a stress-free life, staying positive each day, while focusing on my photography. I didn’t understand why my cancer levels weren’t responding favourably.
I am very privileged to have an understanding Hematologist that is willing to answer any questions I have and provide clarification as needed. I never feel rushed or ‘on the clock’. My Hematologist clarified that my particular type of Multiple Myeloma, was more unique as there wasn’t one particular way to measure my cancer levels. For many Multiple Myeloma patients, increased cancer levels are manifested through an M-Spike, where too much of the same immunoglobulin (e.g. igA or igG) is produced. Immunoglobulin are proteins in the blood. When plasma cells are exposed to foreign substances, they produce different antibodies. These antibodies are referred to as immunoglobulin.
In my case, I don’t show an M-Spike in my blood. Looking at the igG by itself isn’t a valid measure for me. The average person has an igG in the teens, so mine being 8.9 was within the normal range (6.7–15.2). In addition, my igA had been increasing each month since my chemo ended. This was good news. It meant I had more healthy cells and less cancer cells in my blood. In addition, my Gamma Globulin was in the normal range and had also been increasing every month. Overall, I was doing great.
Learning that there wasn’t any evidence of cancer in my blood, defined as complete remission, was eye-opening. It left me relieved. I viewed it as a sign that what I had been doing post-chemo to reduce stress in my life was working. However, I didn’t feel that over-the-moon, fireworks going off, type of happiness. I think that what I wanted was a magic elixir that would transform my mind and body to their pre-cancer state. Taking this elixir would enable me to engage in free-flowing conversation, spontaneous laughter, and the type of care-free chatter I used to do. It would make me an extrovert again, thriving at social events, no longer overwhelmed in group settings. Instead, I felt incomplete.
What continues to weigh on me is that Multiple Myeloma as a blood cancer is incurable. At any time my cancer can reappear. I’ve been spending time reflecting about what this means and whether I can make a greater contribution to society as a Multiple Myeloma patient. I think it is time to rewrite the rules on the Multiple Myeloma game. As a player, I don’t win when I reach complete remission, instead to win I need to experience personal growth from overcoming each challenge faced. Focus on the journey, not the destination.
Why I’m launching Cancer Sabbatical
A sabbatical leave is taken by someone in order to reinvigorate and restore their energy, during which time they may travel, use the time to pursue creative interests, or focus on intellectual discovery and personal development. I need a sabbatical. I have to take a break from my studies at UBC and from the stressful life I’ve lived. It is time to embrace a life that makes me fulfilled, happy, and healthy. I feel a calling to create an inspirational place doing what I love and sharing these experiences with others.
That is Cancer Sabbatical.
Cancer Sabbatical is a place where I will develop and share creative self-portraits that convey what it is like to live with Multiple Myeloma (e.g. feelings of loneliness) through a variety of artistic photo series. I want to raise awareness as someone who struggles with Multiple Myeloma. This may inspire other Multiple Myeloma patients to start their own creative projects.
Cancer Sabbatical is a place where I will create Multiple Myeloma patient stories as short documentaries, which may motivate other Multiple Myeloma patients to share their own experiences.
Cancer Sabbatical is a place where I will research emerging technologies through a patient perspective to explore their potential benefit for Multiple Myeloma patients (e.g. video interview with a 3D-printing medical startup).
A larger objective is to use knowledge gained from Cancer Sabbatical to develop an app or physical product that provides a solution to a problem faced by Multiple Myeloma patients.
Cancer Sabbatical — Dream. Do. Share.