“Diseases are only rare until you know someone with that disease” – Amy Dockser Marcus
I first read this some eight years ago in an article in The Wall Street Journal, but I only understood what it meant when I suddenly found my life turned upside down.
Six months ago, I was diagnosed with myelofibrosis – a rare type of blood cancer where the bone marrow cells, which are responsible for producing the different cells of the blood, die off and are replaced by fibrous tissue.
These fibers disrupt the body’s normal production of red blood cells (which carry oxygen to all organs of the body); white blood cells (which protect the body against invading diseases); and platelets (which help the body form clots when we are injured to stop bleeding and allow our bodies to heal).
Before this, I never knew what myelofibrosis was. My quick reading on my phone as I drove back after getting my results from the clinic showed that it is a fatal, rare disease that usually hits people over 60, with an expected lifespan of two to seven years after discovery. It very rarely affects young people. Every new piece of information I read came as a shock to me – I was in my early 30s, I was part of a small and very loving family, and I realized I had an untreatable type of cancer.
I spent several weeks in a very, very dark place. I was confused, desperate and had nowhere to turn. The only thing that kept me going was support from my partner who stayed strong to help me through this confusion – even though it was confusing for them as well.
Slowly, with support from my family and my close friends, I started to come to grips with the reality I had to deal with now: I was in my early 30s, but I am living with a fatal disease. I had to find a way to make it through, and there weren’t too many options to consider.
Myelofibrosis currently has only one treatment: a very dangerous surgery based on stem cell transplantation. The operation has a success rate of 50%, and a possible mortality rate of 30%. The numbers are so scary that it becomes impossible to even know how to start considering it.
How can someone take such a decision? In a way, it becomes incredibly unfair to ask someone to make such a decision. And it is so paramount that no one dares to help. In the face of these odds, everyone steps back and I am left alone to decide if I should go for the surgery or not. No one wants to bear this on their shoulders should it fail.
It is hard to live with the symptoms of myelofibrosis because they are always there, and can often be debilitating. There’s constant pain – abdominal pain, lower back pain and often it spreads across the rest of my skeleton. The spleen enlarges – mine is currently over seven folds its normal size – in order to try to substitute for the defective bone marrow cells and help produce blood cells. This results in constant abdominal pain and I can hardly eat due to the pressure on the stomach. I always feel full so I’ve started weakening away.
There is a new medication that has only been in use for one year, which can reduce the painful symptoms of the disease. My doctor prescribed the drug for me and she told me that it is a revolutionary breakthrough in treatment of the disease – and that it is. In the past, people had to succumb to these terrible symptoms. But the drug can relieve them in a large number of cases (not everyone responds equally to it).
I have been on the drug for several months now and – thankfully – my body has reacted well to it. The symptoms are much better now, I lead a better life and I’m able to be productive and spend quality time with my family. I couldn’t be more grateful for this.
However, the drug does not treat the disease, it only treats the symptoms. So while my quality of life is much improved, I know that in the long run I must come back to the surgery question – and I fear that moment.
Additionally, the drug is probably one of the most expensive medications in the world. I doubt there’s anyone who can afford the drug, whose monthly cost is more than the salaries of almost everyone I know. For people in many countries, the drug would be covered by their healthcare system because that’s the only way they would afford it. In Egypt, neither the healthcare system nor my healthcare insurance cover it, meaning I have to find a way to afford it myself. It has eaten into my family’s savings of course, but it is a very unsustainable option.
As I look back now, I realize I have been very lucky. I have moved from the very dark place I have found myself in after I was diagnosed to a much better place, and I wouldn’t have been able to do it without the close people in my life who know about this. I have been humbled by the love and support that everyone showed me. I am thankful for everything that I have been given in those people and I couldn’t be luckier to have met them in my life. Alone, I would never have made it out of that very dark place and I will be eternally grateful for having them in my life.
When I look to the future, it is much less sure and very unclear. I have no idea what I should do; I don’t know how to make the next decision. The surgery is probably the biggest choice I have ever been asked to make and I still think it is unfair to ask one person to make a decision that could very well end their life. I think about it and I can’t imagine the moment when I’m wheeled into that operation room, knowing it may very likely be the last place I visit.
But for now, I have decided to delay that decision. There will be a time for it, and when that time comes I will know it and I will make it. For now, I’m focused on how to make the best of what I’m given. It may not be much, it may have drastically reduced from what I thought I had a year ago, but it is still mine, and I need to make it count.
There are people to meet, places to visit, a world to change and hours and days to spend with the people I love the most – and I must hurry because I may not have much time.
From Nadia: The writer of the above words is a very very dear friend of mine. I hope to run the Barcelona Marathon on March 15, and I have dedicated my training and my run to raise funds to cover some of my friend’s medical costs. So far, I have raised about 1/4 of my target amount through online donations and personal donations. Everything that has reached me has already been sent to my friend. But we need so much more. Please help me save my friend’s life. Visit http://www.gofundme.com/runningforlife for details on how to donate online. Every little bit will help.
Heartbreaking, absolutely heartbreaking, and also worthy of admiration, how your friend is coping with this painful and frightening disease! I shared this on Facebook and hopefully it will reach more and more people. I am struggling myself to pay bills or I would send some $ now. I can only offer a small tidbit about something called StemTech that helps stimulate the production of stem cells. It’s from the US, and costs about $60 a bottle, I think. It has had great results in animals and humans, for a wide variety of conditions, and has no harmful side effects. I’m not a doctor and I don’t know how it might help exactly but perhaps your friend might look into it online. Sending prayers & light!
Visit livingwithmyelo.com. We understand XXX
My brother has got chronic idiopathic myelofibrosis and had the transplant two years ago and I would just like to say that he is doing really well today thanks to everyone at the Manchester royal infirmary. Thinking of your friend and wish her all the best
I too suffer from ESSENTIAL THROMBOCYTHEMIA and MYELOFIBROSIS both are incurable.
I’m in absolute agony in my lower back hips and legs
My body is not absorbing the chemo drugs I’m on.
Everyday is a massive struggle for me especially movement.
I’ve already had a mini stroke which is an awful thing to experience and have been told it’s inevitable I will now have a full blown stroke which is terrifying me the most.
What really annoys me is when people say WELL YOU LOOK ALRIGHT TO ME !!
I think to myself YOU STEP INTO MY BODY FOR 10 MINUTES YOU’LL SOON THINK DIFFERENTLY