Cancer is a dirty word, well at least to me. We went to my cousin’s wedding and hubby discovered a lump under Princess of the House’s arm. We took her to our GP. The GP thought it wasn’t serious. He suggested we wait to see what happened. My friend at work, BY, (I have her to thank!), told me in no uncertain terms, I had to seek a second opinion, and gave me her pediatrician’s name. The rest, like they say, is history. That was when Princess was 2.5 years old. She is now 10.
At 4.5 years old, Princess had acute liver failure. We found a liver match at the 11th hour. We were lucky. Others are not so. But near midnight on the day of Princess’ transplant, we had a call from hospital. It didn’t sound good.
Stephen Munn, our surgeon, told us when they cut Princess up, they found cancer in a few places. They suspended the surgery for a while (45 minutes was it? I can’t remember). But after consultations with the best around the world, Dr Munn said (and I will never forget Dr Munn’s words) they decided to go ahead with the liver transplant as cancer is “an imminently treatable” disease. This has been my amulet for a long time now “an imminently treatable disease”. That should be ever cancer parent’s amulet, I reckon.
We have never personally thanked Dr Munn for making the professional decision he and his team made. But he knows -- probably from years in the trade that patients or parents never truly show their gratitude. Why is there need for words when we eat it, drink it, walk it, and live it everyday our Princess is alive.
Cancer – many lives
The cancer saga didn’t end there. Post transplant, when her new liver was thriving, we found cancer lurking again, inside Princess.
Cancer is an insidious disease. It creeps and takes over, when you least expect it. It can be wiped out and killed. But it reincarnates often, like a cat not with nine but a thousand lives. Lucky for Princess, the drugs are getting better. We had had Rituximab in our last treatment, a kind of missile drug, that targets the cancer cells rather than destroy all cells in the body indiscriminately. The first treatment protocol used in Singapore was CHOPP (a cocktail of different drugs, used in chemotheraphy). That was the chemo with its side effects – nausea, hair loss, weight gain (from prednisone, a steroid), constipation. Not wonderful.
World Lymphoma Day
I found out from the NZ Listener magazine that Sept 15 is World Lymphoma Awareness Day (WLAD). How uncanny. Hubby’s birthday is Sept 14th.
Now I will never forget WLAD now! I am not a very scientific person so I find it hard to follow all the different scientific bits of cancer. But I know Princess had Hodgkins, the slow-growing form. It took them a while at the National University Hospital to get a conclusive reading on whether it was Hodgkins or non-Hodgkins lymphoma (NHL). The differences are very fine, even under super microscopes.
Non-Hodgkins is the one deemed a faster growing cancer. The difference between the two types of lymphoma is based on what type of predominant “bad” cells they find in the “diseased” location, T-cells or B-cells and much more.
I haven’t looked very closely at what a cancerous cell looks like, but I have seen what they have shown on House -- under the microscope, cancer cells look like little colonisers – definitely aggression personified. They give you the goosebumps when you look at them because you know their capacity to render you powerless, like an imperialist master over your body, the colony.
These are some facts I have since found:
In NZ, lymphoma (since the source is not specific, am assuming it refers to both Hodgkins and NHL) is the sixth most common cancer in the country affecting about 800 people every year. Certain types of lymphoma can kill in as little as six months.
There has been a 30 percent rise in lymphoma in NZ over the past five years and this is projected to rise further.
What’s scary is most of the people surveyed think symptoms of lymphoma are just signs of flu. Some 89 percent of 501 people surveyed in NZ could not correctly identify that lymphoma was a cancer of the lymphatic system and 94 per cent did not list lymphoma in the top of their mind as cancers. Only 2 percent could recognise the symptoms.
Lymph nodes are like your body’s ammunition against infections. They are the size of a jelly bean (about 1 cm) and when they are in battle mode, they become enlarged.
Princess of the House had a node the size of a ping pong ball under her arm. No other symptoms that I can recall. Other major hubs for your nodes are your neck, armpit and groin. So never ignore those lumps. Other symptoms are: night sweats, persistent fevers, rapid weight loss, trouble breathing, chest pains, weakness and tiredness for longer than two weeks.
The not-so-bad news is the success rate for lymphoma cancer treatments is about 75 percent, according to one report.
In the US, NHL is the 5th most frequently diagnosed cancer in the US. More than 66,000 new cases of NHL are expected in the US this year (close to 35,500 males and 30,700 females). (Sourced from Genetech). Of the estimated 360,000 Americans living with NHL, about 30 percent have diffuse large B-cell lymphoma and approximately 30 percent have low-grade lymphoma.
You can get very deep into the subject. There are something like over 40 different manifestations of lymphoma.
Darling Aunty, my hubby’s sister, is dying from brain cancer; NHL, it is. The kind that spreads fast and furious, like a wild fire. She had it in her kidneys, they killed it. The cancer reinvented itself in her brain, taking over her body – her new master. We are staring at death, very up close and personal.
Princess of the House had just had 2 months in hospital, a narrowing in her bile ducts. The wizards at Startship’s Gastroenterology are doing their best to keep the bile ducts stretched, with a stent. It stays in there till the ducts are wide enough for bile to pass through without clogging up. We are waiting, waiting. We have faith in these Gastro folks. They are the best in the world, they are our Merlins.
Now Princess has unexplained pains at the back of her right ankle. After every imaginable scan and biopsy one can expect, her ankle is still hurting. She now wears a "moonboot" to keep her ankle from being stressed too much. Is there cancer lurking somewhere in the nether regions of ber body? Our oncologist gave us the clear recently, no cancer, she says. The PET (Positron emission tomography: a type of scan where radioactive material is injected into your body to tract cancer/blood flow etc in the body) scan we did on Princess in Melbourne in June gave us the clear. Yet, we never relax. We can never relax.
Truth of suffering
Sometimes, I throw all these vestiges of fear or nightmares at the back of my mind, deep, deep at the back where I can easily snuff out every trace of it. It is easier to forget. Recall takes courage, real courage.
Then, this week, I heard from a dear old friend of cancer in his family. Lymphoma as well. We all have our nightmares to deal with. We all try our best to bury these nightmares and walk tall, relying on their inner resource to face the day. My concerns become imminently less important when I focus on other people’s suffering.
I see the boy in a wheelchair in hospital school with no arms, no legs; and he is using his little “bit of stump” to throw the dice in a game he was playing. No fuss. Just getting on with his game. He is a hero to me now. I talk to our liver nurse (a mom with a kid who had cancer and now in remission) who has to face sick kids waiting for a liver against the clock ticking. She becomes my reminder of what courage is - to face everyday with inspiration - to go out and do the best we can.
What is real is suffering is universal; not exclusive to me. How we choose to respond makes the difference.
Tomorrow, we hope to escape Starship as Princess’ fever has subsided.
Tomorrow, Princess -- wrapped in a beautifully hand-painted dress with koru design done by her best mate’s mom (Kororia take a bow) -- will sing with over 30 other kids several Maori songs – songs that celebrate bravery, fierceness, courage, warmth, love and friendship.
Useful sites on lymphoma
Leukemia and Blood Foundation NZ
Lymphoma Research Foundation
New York Online Access to Health