My life up until two and half years ago was like many of you reading my story. I was a busy married mother with three gorgeous kids; Isabel aged 9, Sophie aged 11 and Isaac aged 15, going about a very ‘normal’ life. My days were consumed with making a comfortable life for my family and preparing my kids for adulthood; school runs, sports, homework, meals, Christmas, birthdays, holidays, tears, tantrums, laughter. Life was not perfect, but it was normal. I guess you don’t realise how perfect normal is until it is gone.
From early 2010, my skin became increasingly itchy and I noticed that I had started losing patches of hair. By mid 2010, a large itchy weeping lump appeared on my scalp and while it was obvious something was wrong a diagnosis proved elusive. In September 2010, I was diagnosed with Cutaneous T Cell Lymphoma (CTCL), Mycosis Fungoides – a rare form of non-Hodgkin lymphoma which primarily affects the skin and can cause extreme itchiness, patches, plaques and tumors. We were told that while it is a rare form of lymphoma and it was likely I would never be cured of the disease, it could be managed. Most people with CTCL die with it, not from it. After many months of imaging what could be causing my symptoms, I felt a strange sense of relief when I was finally diagnosed as I now had some answers. I felt optimistic that this was just a minor health hiccup; so much so my girlfriends and I headed out to dinner to celebrate. Let’s just say it was lucky I had NO idea what lay ahead of me!
After my diagnosis, the rollercoaster of treatment began almost immediately; starting with six weeks of radiation to treat the aggressive tumour on my scalp. Fortunately I was still well enough to drive the two hours to the nearest treatment centre each week. I could work my normal hours as we had an office located there and I could spend my weekends at home with my family. Although the initial treatment was successful, the disease was progressing and the condition of my skin was worsening with more patches and plaques appearing. So my specialist started me on Interferon injections that could be self administered at home. After a few months when this treatment appeared to be failing I began an oral treatment in early 2011. By April 2011, I was still feeling optimistic about my future health and was managing to work and maintain family life until routine testing showed enlargement of my lymph nodes; this meant the luxury of being at home was no longer an option and my specialist gave me the news I had dreaded; I needed hospital based systemic chemotherapy.
To receive the treatment I needed meant that I had to be in Brisbane for a minimum of six weeks which is a four hour drive from our home town. I was devastated to leave my family, but we decided that my husband and children should continue to live their lives as normally as possible at home. So my mother generously put her life on hold and moved to Brisbane to be my carer throughout treatment, with the Leukemia Foundation kindly providing free accommodation where my mum could stay and my family could come to visit.
My first couple of hospital stays was a huge adjustment, as up until this point I had managed to ‘fit’ cancer into my life. All of a sudden I was faced with a different reality such as a potentially life threatening disease; being apart from my family; resigning from my job and losing that much needed income; suffering terrible claustrophobia from being connected to a drip and being confined by hospital walls. I was desperately craving my normal life.
Each cycle of treatment was 21 days, and I very much looked forward to going out to the Leukemia Foundation’s unit with my mum to recover between treatments. My husband, kids and siblings would visit as often as possible which I loved, but each goodbye was heartbreaking. This time however definitely brought us all closer together.
It was during my second chemo treatment my disease showed just how resistant it was going to be. My specialist needed to change the chemotherapy protocol. It was likely I would now need another four cycles of treatment, which meant at least another twelve weeks in Brisbane. As the treatments progressed I spent longer in hospital as my body became tired and I struggled to recover from the effects of each treatment. I had however undergone a successful stem cell harvest with enough stem cells collected to allow for three Autologuos Stem Cell Transplants in the future.
After almost six months in Brisbane and six cycles of chemo, the disease was still active, so in October 2011 I underwent my first Autologous Stem Cell Transplant. In simple terms, this is a very full on cycle of high strength chemo aimed at suppressing the immune system, taking you to what felt like the brink of death and then bringing you back to life with the infusion of my previously harvested stem cells. The recovery process takes weeks and requires much support therapy in the form of blood and platelet transfusions (which is why blood and platelet donations are so critical for cancer patients). The process was physically and emotionally very tough, and recovery was made more difficult due to gallstones and surgery to remove my gall bladder. But the transplant appeared to be successful, so the decision was made to do another stem cell transplant. A visit home for a few weeks for the first time in eight months to celebrate Christmas and New Years was a joyous yet difficult experience. I felt like a stranger in my own home not wanting to settle in too much as I knew it wouldn’t be long before I had to return to undergo the second transplant.
The second transplant was even more difficult than the first transplant so by the time I returned home I felt I had hit rock bottom both physically and mentally. During the previous 10 months of treatment I had suffered viruses with debilitating migraines, my throat had been stripped of cells and was unimaginably painful, nausea had been so extreme that I had to be fed through a nutrition bag for weeks on end, and I had even been forced to wear a nappy. But despite this I was truly hopeful that the treatment was over, the disease was under control and I was on the road to recovery. I was now at home with my family and my mind and body could now begin to heal.
This hope was dashed much sooner than expected – barely a few months had passed and the disease reappeared and it was clear that I needed to start treatment again. During the past months I have tried injections, systemic chemo, and oral treatments which have either been unsuccessful or caused my blood counts to drop to dangerously low levels. My husband and I have made trips most weeks to Brisbane to receive treatment or transfusions and for most of my time home in 2012, I have been quite unwell from the effects of treatment or the disease itself. The financial impact of only one income and all of the medical expenses were also taking it toll.
When I was initially diagnosed I felt that the fact that for most people, this disease remains confined to the skin made this ‘the cancer to have’. But over the past months the pain and intense itchiness from the rapidly progressing disease have made this an unbearably painful disease to have. I have lost my hair, have lesions in my ears, on my face, scalp, back, bottom, thighs, breasts; the itch becomes so unbearable I scratch my skin until it bleeds. I wash my sheets and towels daily to remove the blood and each morning when I wake the first thing I see is the cancer staring back at me. So I am constantly reminded of it.
At this time, my only real hope of restoring my body to health is a donor bone marrow (stem cell) transplant. I am now on the registry to find a donor and searches are being conducted both in Australia and globally but to date no donor has been found. There is a treatment that should be trialed for my disease sometime in the near future but my specialist isn’t sure whether I have the time to wait for the trial so we are considering taking a leap of faith and paying for the treatment even though it hasn’t been proven to be successful in treating my disease.
Currently, I am taking a temporary break from treatment to consider my options and hopefully allow my body and blood counts to recover. I am exploring natural therapies to see what role these could play in healing my body and the side effects of treatment, but all of this comes at a hefty financial cost. For now I have accepted that this is my new ‘normal’ life, which at times makes me sad but acceptance brings with it an ability to live life in the moment and enjoy every moment I am at home with my family. I am now not just focusing on what can be done to halt the progression of this disease but what I can do to live each day as comfortable as possible, which means treating the effects of the disease on my skin to try and soothe the burning itch and pain, and relieve the dry cracking flaky skin.
As 2012 comes to a close I reflect on my journey and I know that I am very grateful I didn’t know at the outset what direction my life would take after my diagnosis. I am grateful for the support I have with my family and friends and for the team of specialist that are working with me. I know 2013 is going to be filled with more challenges related to this disease, but for today I am living with cancer and learning how to be okay with that.