Grant, Neri and Sheryl Southam at Milford Sound, January 2008It was nearly two years ago that I first noticed a lump under my left rib. At first I thought it was due to the extra effort I was putting in at the gym but, after checking the right side and not finding a match, a feeling of dread came over me. I'd felt less energetic and had been off my food and had also lost a few kilos, but I'd put it down to finally working out the "supreme healthy eating plan" to achieve my ideal weight!
At the doctor's surgery, my doctor predicted two scenarios; either a pancreatic tumour or an enlarged spleen due to a blood disorder. A blood test confirmed her second choice. The spleen had enlarged and was pressing against my stomach creating a feeling of fullness. She rang me right on dinner time and asked me to be sure I was sitting down while she gave me the diagnosis of chronic myeloid leukemia or CML.
Of course it was a big shock and totally unexpected. I was on an emotional roller coaster ride thinking about all of the ramifications for me and my family. It seemed rather unfair as I prided myself on the care I took with balance, food and exercise. The medical profession doesn't know what causes this chronic illness but it seems that exposure to environmental pollutants could be a risk factor. It made me wonder if all of those years spent in darkrooms processing black and white film and prints may have contributed to getting the disease, but I know a lot of photographers who have great health so maybe it was due to a genetic weakness.
CML is a type of bone marrow cancer, where chromosomes 9 and 22 switch places; it's called the exalted name of "The Philadelphia Chromosome". This switch creates a protein which sends a signal to the bone marrow to produce many more white cells than needed. The main problem with this disease is that, over time, the white cells become less and less effective and the body becomes more prone to infections. Also the disease inhibits DNA repair to the cells creating further abnormalities and so progresses to the accelerated phase within 3-4 years of first getting the disease. Then, after another 6 months or so, it enters the acute stage which is fatal. It was as confusing as learning a foreign language to me at the time, but the Internet is a marvellous tool for research and I've learnt a lot since.
The doctor told me to rush into Ward 62, Haematology at Auckland Hospital that night as the medical team needed to do urgent blood tests and hydrate me to lessen the potential of any liver or kidney damage from the body dealing with far too many white cells circulating. I was told that I would be in for 3-4 days. My stress levels went sky high as I wondered how my husband (Grant), and especially my eight year old daughter (Neri), would cope without me for that long.
The next day my specialist, Dr Richard Doocey, confirmed the diagnosis and told me that if I was to get any type of leukemia, that this was the one to get, as it was highly treatable with the latest wonder drugs. The staff at Ak Hospital were excellent with sharing their knowledge, warmth and caring. They gave me some booklets to read and I was sent home the next day to start the drug regime.
At the doctor's surgery, my doctor predicted two scenarios; either a pancreatic tumour or an enlarged spleen due to a blood disorder. A blood test confirmed her second choice. The spleen had enlarged and was pressing against my stomach creating a feeling of fullness. She rang me right on dinner time and asked me to be sure I was sitting down while she gave me the diagnosis of chronic myeloid leukemia or CML.
Of course it was a big shock and totally unexpected. I was on an emotional roller coaster ride thinking about all of the ramifications for me and my family. It seemed rather unfair as I prided myself on the care I took with balance, food and exercise. The medical profession doesn't know what causes this chronic illness but it seems that exposure to environmental pollutants could be a risk factor. It made me wonder if all of those years spent in darkrooms processing black and white film and prints may have contributed to getting the disease, but I know a lot of photographers who have great health so maybe it was due to a genetic weakness.
CML is a type of bone marrow cancer, where chromosomes 9 and 22 switch places; it's called the exalted name of "The Philadelphia Chromosome". This switch creates a protein which sends a signal to the bone marrow to produce many more white cells than needed. The main problem with this disease is that, over time, the white cells become less and less effective and the body becomes more prone to infections. Also the disease inhibits DNA repair to the cells creating further abnormalities and so progresses to the accelerated phase within 3-4 years of first getting the disease. Then, after another 6 months or so, it enters the acute stage which is fatal. It was as confusing as learning a foreign language to me at the time, but the Internet is a marvellous tool for research and I've learnt a lot since.
The doctor told me to rush into Ward 62, Haematology at Auckland Hospital that night as the medical team needed to do urgent blood tests and hydrate me to lessen the potential of any liver or kidney damage from the body dealing with far too many white cells circulating. I was told that I would be in for 3-4 days. My stress levels went sky high as I wondered how my husband (Grant), and especially my eight year old daughter (Neri), would cope without me for that long.
The next day my specialist, Dr Richard Doocey, confirmed the diagnosis and told me that if I was to get any type of leukemia, that this was the one to get, as it was highly treatable with the latest wonder drugs. The staff at Ak Hospital were excellent with sharing their knowledge, warmth and caring. They gave me some booklets to read and I was sent home the next day to start the drug regime.
Impending Bone Marrow Transplant
To cut a long story short, after nearly two years of seeing my specialist and taking two series of drugs, with various side effects, I learnt that I was one of the unlucky few that the drugs did not put into remission. The drugs were keeping my blood results looking relatively normal but were not curing me on a chromosomal level. I was developing increasing chromosomal changes and the window of good health was closing. Dr Doocey predicted that I've had the disease for at least a year before diagnosis, which meant there was less time to find a drug that would work for me.
I met with Dr Doocey again, just after my 50th birthday party, on Dec 22 2008 and he told me that an allogeneic bone marrow transplant, or BMT, was now my best option. My siblings were tested to find the best tissue match. Only one in four siblings is a match so I was very glad to come from a family of six children. It turns out that my younger sister Robyn is a good match, and willing to go through the procedure, so I am truly lucky indeed. She will have injections to increase the mobilisation of her stem cells from the bone marrow to her blood, then they will collect these stem cells from her blood over four hours and give them to me through a blood transfusion.
A BMT has a good chance of curing the disease but comes with serious risks as well. It involves at least a 4-6 week stay in the Ward 62 Isolation Unit at Ak Hospital. First my own immunity is killed off with various chemotherapy drugs and then I will be given Robyn's donor stem cells. After 10 - 20 days the cells start to engraft and my immunity will start to rise slowly. The side effects of the chemotherapy drugs can be very unpleasant and can leave the patient with dealing with damage to the mucous membranes and very low energy. When the immunity is sufficiently stable, and providing other serious complications don't arise, I will be sent home to continue the recovery.
Then I will have at least a month or two visiting Ak Hospital Day Stay to be under close observation and to clear up any problems. Graft versus host disease (GVHD) is one of the biggest problems and this is when the donor's immune cells attack the recipient's leftover immune cells but taking steroids usually clears up this setback. After six months I should be able to join the outside community again, although I will be able to have visitors at home in the meantime.
Amazingly Ak Hospital are able to admit me very soon; I've been given a date to start the BMT: February 23rd. I will go into the Isolation Unit in Ward 62 at Ak Hospital and that is called Day -08 (minus 8). On day 0 (zero) I am given the stem cells. The numbers then work forward from there, with the specialist watching out for engraftment of the donor cells by day +10 - +20.
Of course my priorities have changed since I last saw the specialist and I've decided to leave the photography business to Grant and focus on wellness. However it is strange to be feeling in such good health (able to go to the gym and have plenty of energy for my family, friends and hobbies) and yet I require the major medical procedure of a BMT. But as I mentioned, the window of opportunity for remission has closed, and without medical intervention my health will decline rapidly.
I have a good shot at being cured and I'm choosing to focus positively on that. I feel well-supported by my family, sisters and friends. I'm considering this time to be one of 'renewal'. After all, I will be left with my sister's immunity (and curiously her blood type) and she reckons that she's really healthy and strong!
Amazingly Ak Hospital are able to admit me very soon; I've been given a date to start the BMT: February 23rd. I will go into the Isolation Unit in Ward 62 at Ak Hospital and that is called Day -08 (minus 8). On day 0 (zero) I am given the stem cells. The numbers then work forward from there, with the specialist watching out for engraftment of the donor cells by day +10 - +20.
Of course my priorities have changed since I last saw the specialist and I've decided to leave the photography business to Grant and focus on wellness. However it is strange to be feeling in such good health (able to go to the gym and have plenty of energy for my family, friends and hobbies) and yet I require the major medical procedure of a BMT. But as I mentioned, the window of opportunity for remission has closed, and without medical intervention my health will decline rapidly.
I have a good shot at being cured and I'm choosing to focus positively on that. I feel well-supported by my family, sisters and friends. I'm considering this time to be one of 'renewal'. After all, I will be left with my sister's immunity (and curiously her blood type) and she reckons that she's really healthy and strong!
Policy on Visitors
I have set up this blog to keep family and friends informed with my progress. Also I hope it will help other BMT recipients get another insight into the whole experience. My unit has a telephone for outward going calls and I plan to keep in touch using email and txts too.
Visitors are welcome, but with these restrictions:
1. Adults need to arrive in clean clothing, remove jackets and wash hands upon entering the BMTU. This will be a relief for those who expected to wear masks and aprons!
2. One or two visitors are allowed at a time. A txt first would be appreciated, just to make sure I'm feeling well enough.
3. No fresh or dried flowers, pot plants or fresh fruit are allowed, but cards would be appreciated.
4. People with known infections such as colds, coughs, diarrhoea, vomiting or any other infection must not visit; not just for my sake, but for the other four patients as well.
5. Those who have been in contact with illnesses such as chickenpox, measles and mumps must not visit.
6. No children are allowed to visit as their immune systems are not as well developed.
Hey but don't let this put you off calling in on me. If I'm feeling up to it visitors will provide a much needed support and distraction.
