What one doctor thought was a simple case of adult eczema in December 2008 started eight months of doctor’s visits, blood tests, x-rays, scans, biopsies, pills, potions and lotions. This finally led to the diagnosis of lymphoma. And not just any lymphoma but T-cell rich B-cell, a ‘grey’ sub-category of diffuse large B-cell, non-Hodgkin lymphoma, stage 4.
My symptoms started in November 2008 when I came home from schoolies. I had a rash on my torso which one doctor thought was fungal. A few days later, another doctor diagnosed Pityriasis Rosea and put me on prednisone. The rash persisted, actually getting worse and I was referred to a dermatologist. He increased my doses of prednisone which cleared it so that by Christmas day I looked pretty good and by new years eve, (my sister’s 21st) my skin was almost back to normal.
This didn’t last very long and by late-January the rash was back.
Mid-February my lower legs started hurting like they were burning. They came out in bruised looking lumps that, after several pathology tests, confirmed Erythema Nodosum. At the same time, my new GP ordered a skin biopsy as the rash was back and getting worse. The results from this suggested a spider bite or drug reaction neither which was correct. This condition cleared up after a couple more weeks on prednisone.
I returned to the dermatologist early March for a check-up. The rash was still there and not reacting to any meds. Because it presented in my inner elbow region and behind my knees, and I had a history of childhood asthma, this doctor kept up his original diagnosis of adult eczema although I had, by this time, rashes on my face, neck, chest, back, tummy, upper thigh and groin. I was covered in it and it was as itchy as it could be.
By this stage, my skin was so bad that my dad was strapping my arms with bandages before I went to bed to stop me scratching them. Late March, the rash on my arms was so bad you could feel that heat coming off them from a foot away. I was taken to hospital were the doctors told me it was just eczema, that it wasn’t infected and to get an antihistamine. The next day I was back to my GP who could smell the infection before I had finished removing the bandages.
The Erythema Nodosum returned early April. A fortnight later I was back at the doctors when mum was concerned with the look of my eyes. One eyelid was quite swollen and it looked like I’d gone berserk with brown eye shadow right around both eyes. Some steroid cream settled this down.
A month later I was back at the GPs with an infection in my eye called Phlyctenular Conjunctivitis. Steroid drops eventually cleared this up.
The CT scan suggested possible Sarcoidosis but the radiographer would not rule out lymphoma.
A fine needle biopsy was ordered. Two days later, our GP phoned to say that lymphoma was confirmed. While initially I was stunned and angry at the diagnosis and had a cry about it, my family and I were actually quite relieved to have a diagnosis and to know it was treatable and curable.
I was referred to the RBWH under the care of haematologist Dr Kirk Morris.
Dr Morris ordered numerous tests such as heart function, PET scan, Bone Marrow and Lung function which were done over the next week. The PET revealed that my lymphatic system was riddled with cancer.
It was if my body knew that the disease had finally been picked up as by the end of these tests, my body had shut down. My vision was impaired, my speech was slurry and my memory was gone. I was immediately admitted to hospital and a MRI performed. I stayed in hospital for 10 days during which they also did another lymph node biopsy, I saw their dermo and eye doctors and I waited for what treatment they would put me on for my cancer.
My relief at finally having a diagnosis continued on throughout my months of treatment and I always arrived at the hospital, whether for a check-up or chemo, with a smile on my face. The nurses often commented on how cheery I was and were concerned that I was not coping but putting on a brave face.
Chop-R was the chemo of choice. I had my first dose on July 30 and then fortnightly after that until October 8. A CT and another PET were ordered before I saw Dr Morris again late October. None of us were surprised at all when he told me that the cancer was still there and that I would need another round of chemo, this time ESHAP. He also mentioned that a stem cell transplant was on the cards.
Because this chemo was delivered by infusion over 22hrs for five days with then a 14 day break, I had a PIC line inserted in my left arm. I also made the most of being free for Melbourne Cup and went to a party before starting the ESHAP . This was repeated three times, finishing just before Christmas. During this time I was having bloods done very regularly and was admitted in November so they could harvest my stem cells for the transplant.
Throughout this whole period my skin remained the same – crappy. My left arm swelled up as I had developed blood clots around the PIC so was back to hospital every day for bloods and put on blood thinners and also had a platelet transfusion. The PIC was removed just after Christmas and I made the most of this was going to beach for a couple of days. (You can’t get a PIC wet.)
January 2010 and I was back at the hospital to learn about my autologous bone marrow transplant ( my own stem cells), and for various baseline tests and the insertion of a Hickman line.
For a week they pumped me full of chemo drugs to kill off my bone marrow. A bone marrow or stem cell transplant is like crashing the hard drive of a computer and rebuilding it. My transplant took place early after lunch and took all of 15 minutes. They put 48ml of cells back into me. I felt marvellous after this and was up and about very quickly.
But boy, did I crash a few days after that. I felt disgusting, I had ulcers in my mouth and throat, wasn’t eating and a few days after the transplant, I was in agony with pains in my belly. A CT was ordered but nothing showed up. The pain continued so I was put on a cocktail of drugs to relieve it. And still no relief. I had my bags packed to go home after three weeks but I was to be sadly let down. Not only was I not allowed home, but I was rushed into surgery on March 1 as they realised that my abdomen was full of pus. The only good news during this time was the stem cells had taken well and 10 days after the transplant my skin finally started healing.
However, I ended up celebrating my 19th birthday in ICU and vaguely remember the bunch of balloons that my Annie bought up to me.
After a week of being on a cocktail of pain meds (a lot of which have a street value) and broad spectrum antibiotics, the doctors in ICU finally had a name for the bug that had made me sick after my transplant – mycoplasma hominis. I don’t remember anything during this time as I was very sick and had two system failures – my lungs and GI tract.
Three weeks later and thousands of dollars worth of tests, drugs, drugs and more drugs I was released from ICU and back to the ward where I stayed for just one week. My mental state after spending 8 weeks in hospital when I was originally told 4 was not real good. I was released from hospital just in time for Easter on the promise that I would attend for check-ups twice a week. A month out of hospital and I ended up with the nasty case of shingles which lasted three weeks.
From the time I started chemo until after ICU, I lost my long brown hair three times and my weight went from 55kg to over 85kg. My body is covered in scars from biopsies, surgery, drainage bags, central lines, and blood tests galore but I am cancer free and have been now since my transplant in February 2010.
My thanks to the staff of RBWH ward 5C, haematology, and ICU for taking such good care of me and my family.
During this period, I was also sent to see a general physician. I was a complete puzzle to him. He ordered 33 blood tests in three visits during which he picked up that my ACE levels (Angiotension Converting Enzyme) was high. My IgE levels were also abnormally high, sitting at 77 600, so he looked at Hyper-IGE syndrome. As my ACE levels were changing he ordered this test again, telling me that a CT scan would be ordered if this test came back high. My family and I have never been so happy to receive a phone call from a doctor’s surgery to say there was something wrong. It meant we were hopefully on the way to a diagnosis as to what was causing all these weird things that were happening in my body.