Bec's Story
In an instant, everything can change
It was back in 2005 when my life began its change in direction. I began feeling unwell at the end of January, at first it was just a few problems here and there, but before I knew it, months had past, lots of doctor appointments later with new problems each week replacing old problems. Experiencing nausea, vomiting, headaches, steady weight loss, night sweats, hot and colds, pale complexion and a general feeling of being unwell, not always experienced at the same time. These problems are quite common and are often associated with viruses.
My blood tests confirmed an infection, but I continued with my motivation and determination to complete my TAFE course and work and not to let anyone down by cancelling plans. Daily trips on the train where I got off several times on the way to work to be sick, only to get back on the train and continue on my journey, soon became the norm.
Surprisingly there was a period of a few months where the symptoms dispersed and I began feeling well again, which again confused the doctors. After feeling well for 3 months my symptoms began to return in December. It reached the point where people wondered if I was simply making it up for attention. I knew something wasn't right and wouldn't ever do anything for attention, but after having so many tests and nothing ever showing up, I did lose my confidence in the medical system and I even questioned if my physical symptoms were physiological.
I successfully graduated after battling my health on and off for a year; I look back on my graduation photos and realise just how pale I was. Soon things would change forever. After Christmas I noticed a lump near my neck/collarbone as I itched my shoulder, it felt like a golf ball, solid and hard, I knew this wasn't right and called the doctors straight away for an appointment.
A neck biopsy and ultrasound followed and showed simply reactive lymph nodes, nothing to worry about. I reverted to natural medicine in the following weeks as general practitioners didn't seem to be getting anywhere. By this time I had no immune system and was feeling rather fatigued. Food poisoning followed and when I showed my doctor only a little over a week later that the lump remained and hadn't shrunk, I was referred onto a blood specialist.
Wednesday, 1 March 2006 - The day my life changed forever
Within two days of seeing this hematologist/oncologist, having a blood test and chest x-ray, I was told I had Stage 3B Hodgkin's Lymphoma and that I would require 6 months of chemotherapy. No one factors such a thing into their life and hearing the word 'chemo' the first thing I thought of was losing my hair. I was 20 years old, logically that was my first worry, the other being giving up work and other 'usual' activities, and losing who I was. Shock and numb are the only sensations I feel when I think of me on that day.
The following week I had a biopsy on the swollen gland and further tests before starting regular fortnightly chemotherapy sessions. I responded well and was in remission after my 4th chemo, but I still completed the 12 sessions to ensure the disease wouldn't return.
I reclaimed my life back from cancer when I found out I was 'all clear' and in remission on 11 October 2006. I began rebuilding my life, I bounced back health-wise, my hair looked fantastic and each week I did Pilates classes to build my strength and get myself ready for a return to 'normal life'.
Tests were conducted every 3 months to ensure I remained in remission and never in my wildest dreams did I think things would turn out the way they have. The outcome for Hodgkin's Lymphoma after standard therapy is 95% cured. Good odds. Or are they?!
After reaching my 6 month mark in remission, I had more follow-up tests; a scan revealed abnormality in my chest even though the blood test appeared normal. Further scans were to be conducted 'just to make sure' all was fine. I left the building that day, telling Mum that I couldn't ever go through the cancer experience again and that I don't know how I did it.
Little did I know that within a week, 26 April 2007, I would have to find that courage and strength again to face yet another set-back. We sat opposite my specialist as he flicked through his paperwork. He looked at me with a concerned and worried look on his face, my temperature began to rise, and then he told me that my cancer had become active again. When I was initially diagnosed I knew something wasn't right, but being told you're sick again and it's been aggressive when you simply feel fantastic is horrifying!
Surgery was conducted the following week for a catheter to be put in. I began a regime of chemotherapy drugs known as ESHAK after that; where I would have Monday to Friday chemotherapy in the day unit, followed by 3 weeks off, this would happen 3 times.
Scans between treatments were conducted and showed considerable improvement, the cancer seemed to be responding. Or was it?
I donated my own stem cells during a 'good week' after having 4 injections a day to boost my white cell count as we were looking at me having a stem cell transplant at some stage. My brother wasn't a bone marrow match, so stem cells became my option.
Being admitted to hospital was something I became prepared for. It was likely that I would be in there around a month so I prepared myself well by taking in lots of things to entertain me, little did I know, I wouldn't use any of it!
Treatment was intense for 6 days, but the nursing staff and doctors were fantastic and I tolerated the treatment well, losing my hair yet again. I responded well to the stem cell transplant. I was in awe of the whole procedure and couldn't believe this had been around for over 25 years!
After being discharged in time for my 22nd birthday, I was excited to be home at last! A scan was done a few weeks later, adding to my nightmare. The intense therapy hadn't gotten rid of the cancer; all it did was stop it from spreading. Going through what I had and knowing that it made no difference was shattering to say the least.
Still I soldiered on, determined to beat this bastard! There was no way I was going to let this win!
My next option was radiotherapy, more meetings and tests with specialists. I began 4 and a half weeks of radiotherapy, Monday to Friday, to my mantle/chest area. The treatment left my throat internally burnt, making eating difficult, but once I completed the treatment, it healed in time for Christmas lunch! It tasted amazing, it was truly blissful.
The year 2008 began showing signs of promise; the scans revealed that the radiotherapy had finally gotten rid of my persistently active node near my heart! But unfortunately there was a 'however' 2 nodes had become active near my kidneys.
A further 4 and a half weeks of radiotherapy followed, which was aimed at my stomach, bladder, bowel, spleen and pelvis. I was feeling more confident knowing that the previous radiotherapy had worked and the nodes that had become active were tiny. This didn't stop the doubt though, my mind was in overdrive, especially when recovering from the treatment, and I wondered what was going on in my body.
My worst fears were confirmed when I found out that the last lot of radiotherapy hadn't worked and my cancer had in fact spread. The experience turned into one long nightmare, but what I take from this experience as I await my next step, which is a clinical trial and/or bone marrow transplant from a donor, is NEVER GIVE UP.
While there are options, there is hope.
Appreciate those you care about, tell them that you love them, and surround yourself with positivity and laughter.
Update June 2009
Miracles happen, upon further testing as I approached my bone marrow donor transplant, my scans came back clear. No signs of cancer. This confused all specialists, treating staff, family friends.
I followed my lifetime dream and travelled to Canada and hope that my remission continues. If my cancer comes back, I will fight with all I have; I refuse to let it win!
Update June 2011
Years on I’m still on this merry go round, sometimes rollercoaster journey.
After returning from Canada it was back into check ups, my next few scans showed two areas of what appeared to be activity, but because they were small, we just watched them closely. After months of simply watching and not knowing if it was scar tissue or active lymphoma, my professor decided it was time to biopsy to confirm our suspicions. What initially seemed like a small procedure, in my mind anyway, turned into a massive operation. The location of the nodes was hard to get to and I ended up having a ‘clam shell’ incision made under my breast line. Which meant being cut from one side to the other, a bit horrifying just to biopsy two little nodes but I took this operation as a new challenge and decided if they were going to do it, I would request a boob job, “while they were already there”.. Surgeons found my humour amusing but reiterated several times that they “weren’t that kind of surgeon”. Pity!
The recovery took a while, I had many tubes and was in hospital a good few weeks, but given the procedure, I healed very well. Unfortunately they were unable to get to both of the nodes. One was removed and the other was tightly attached to the wall of my lung and near my heart, but a biopsy was taken.
To confirm our fears, the node they took out, wasn’t cancer, and the one they couldn’t get to, was. My cancer was back, again!
As of May 2010, my professor placed me on a new AKT inhibitor clinical trial which he was conducting to try to stabilise my disease. After joining this trial my disease appeared to be responding to treatment and then further scans have shown some growth and then stability. I’ve now been on this trial over a year but I’m border line being kicked off, due to my cancer growth.
My next and final option is to finally have the bone marrow transplant, from a donor. I encourage everyone to look into becoming a donor, all they need is a couple of extra tubes of blood when you donate blood to the Red Cross and they will test you and put you on the registry. You could save someone’s life! I’m so grateful that I have a match in America, without them, I wouldn’t have my final prospect of a cure.
I’ve tried putting off this procedure because of all the risks involved, but when you get to this time in your treatment and this is the only real chance I have of finally getting rid of this disease, when the time comes, I will do it.
Having had cancer on and off for over 5 years, I can call myself a frequent flier in the hospital system, I’ve learnt so much and met amazing people who I will never forget.
It’s important to do the things that make you happy, it helps keep you sane. While on this trial I’ve been able to save and go on short trips, explore new places and become a tourist and not the patient, it helps keep you going when it feels like you’re not going anywhere. Never give up hope! Like I’ve always said, from my initial diagnosis, while there are options, there is hope.