Author: Raomal Perera

Day +8, roll on the days! My mouth is sore it’ll be difficult to eat and I won’t be talking much today. That is a shame as Susan will be my care nurse today. She is a lovely Irish lady and is married to an Australian and lived in Australia and loves to watch cricket. Last week Australia lost to New Zealand for the first time in 30+ years and off course Sri Lanka were completely outplayed by South Africa.

Even with some pain, I will try to keep my blog going as this is great therapy and helps to lift my spirits. It is strange, I have been in hospital in isolation for close to 3 weeks and it hasn’t been long, lonely or dreary. Denis and Mairead, thank you for encouraging me to start writing this blog.

I wasn’t woken up at 2 a.m. last night (don’t know why), but I got uninterrupted sleep for a change. I get cyclosporin intravenously for 6 hours every day (this is the immune suppressant drug) and these levels are high in my blood and they have temporary stopped it today. More freedom of movement just inside these four walls as my blood counts are too low to go outside. They are also slowing weaning me off the steroids.

Christine Commerford-Lynch in her book on entrepreneurship ‘Rules for Renegades’ talks about the 10 steps for ‘Getting Things Done’. When I teach entrepreneurship, I often talk about this. Yesterday it struck me that these ten steps apply not just for building companies, but is a blue print for living life to the fullest. In my case, I will call it Getting to Plan B (my new life)!

It is about maximising your forward motion while minimising your drag coefficient.

1. Take Responsibility. Say good-bye to blaming others because your life isn’t working or you don’t have what you want. You’re no one’s victim. Everything in our lives, good or bad, is the result of our actions or thoughts.
2. Get Visual. Set goals. Visualize them being achieved, and act on making them happen.
3. Solicit Superb Support. A supportive community of friends and family are key to Getting to Plan B.
4. Toss Toxicity. Move away from negative thoughts and feeling self pity. Stop being a martyr.
5. Pump up the Positive. Negative self-talk fosters a negative self-image. We sabotage ourselves far more than anyone sabotages us. Be positive!
6. Log on to the Law of Attraction. This is my favourite step and it has worked all the time for me.  I believe that “What you focus on, you become.” That’s the idea of the Law of Attraction. When you develop a clear idea of what you want, focus on it, and feel good about it, your mind will consider your wishes to be marching orders. The universe will conspire to help to make your dreams come true.
7. Persevere. Don’t let set backs hold you down. It’s okay to be afraid.
8. Pay Attention. Pay attention to what’s going on around you. While you’re concentrating on the cracks in the sidewalk, you miss the rainbow.
9. Continuously Course-Correct. We all make mistakes therefore be ready to change course.
10. Celebrate Success. Take time to celebrate and enjoy life.

I trust these steps will keep you on track, to your Plan A and help me get to Plan B! That’s all for now folks!

I don’t think we can ever be well prepared to hear the news that someone very near and dear to you has been diagnosed with a ‘terminal illness’. The focus almost immediately falls on the patient but I think the close family needs more support than the patient. I will write my thoughts on this today.

Day +7, my blood counts continue to drop. It seems like I am getting a sore throat. They did warn me of this. The chemotherapy damages the lining in your mouth and all the way down the gut.  The new donor stem cells is what will help to repair this. There is a time lag and that is one of the rocky patches. This is one area in the transplant process that they haven’t got a good handle on and no doubt a major area of research is being carried out. I have to do regular salt water mouth rinses and take mycostatin that helps to delay the damage. My boat is in ‘stormy waters’ heading towards the hurricane! One of the miracles of Jesus, ‘calming of the storm’ comes to mind here (Lk 8: 22-25) and just like his friends we may have to wake him from his slumber! When I started writing this blog it was to shine a light for my children and instead I find that it has helped me a great deal to lift my spirits. There is a Buddhist saying; “when you light up the path for another, it lights up a path for you”.

It was on Monday April 11, 2011 after a routine blood test, that I got a call from my GP to rush into the Accident & Emergency Department of  St. Vincent’s Hospital, Dublin. When asked, she said that my white blood cell count was raised and that Leukaemia was a possible cause. At the hospital, the Consultant Haematologist gave me the bleak news that in his opinion it was a very acute form of the disease and that I should be prepared for a very long stay in the hospital. However, the diagnosis changed the next day to a chronic form and I was home by Friday.

The first day was the most difficult day to handle. It was disbelief, shock, horror and fear all hitting you like a ‘perfect storm’. I was in tears most of the night not fully able to comprehend what on earth is happening to me. It is in these first few days that I, the patient, needed the support. I was very fortunate that almost immediately I was surrounded by a wall of prayer. The rest of the journey was relatively easy for me, as I was able to accept the situation and work towards a solution. This is a bit of a roller coaster ride, but with the support of my friends and family I have made it to this point.

Reflecting on the last few months I feel that I should have done more to figure out how to support those affected by my condition. This is Pat my wife, my mother, who lives 8000+ miles away and my four children, Lesley-Ann, Amal, Rohan & Shereen. The focus is always about the patient but those nearest and dearest to you suffer more as they would feel very helpless. Fortunately, our friends connected Pat with the local cancer support groups, relaxation therapies and counsellors and the process has been very helpful. I feel I let my mother down as we should have figured out some way to better support her through this crisis. I don’t know what affect this had on my children, but that it would have been better to deal with it upfront and even having them join Pat when she went to the cancer support group. Sickness has a way to give you self pity and draw energy and support into yourself, in a way, helping you dig a deeper hole. Lesley-Ann is very quick to point this out by saying “Dad, you are playing the martyr again”.  She is right, we all win, if we can look outwards instead of inwards. It was great to get all the attention, but I wish I was looking out more for those affected by my sickness.

That’s all for now folks! Tomorrow I might try and take a different tack by looking at the similarity of entreprenuership/building a company and the journey back to health.

Day +6 is another good day. Got more sleep last night. Finally I will get down to write about the treatment before the transplant. Today, I asked my Consultant if this procedure, stem cell transplant is a ‘cure’ or a way to ‘prolong life’. She looks at this as a way for a complete cure, but it is possible for the leukaemia to return. Which is probably the case for most cancer remissions.

Treatment starts on Day -10. They put in what is known as a Hickman Line on the day you enter. A Hickman line is an intravenous catheter used to administer the chemotherapy, other drugs and withdraw blood. This was done under a local anesthetic, I think by a surgeon, but it could have been a radiologist as it was done in the X-Ray department. It involved two cuts, one at the main vein that goes directly into your heart and one on the chest wall.  It was not a painful procedure and probably took less than 30 minutes. They do warn you about the potential complications beforehand, such as bleeding or puncturing the lung. This went off smoothly without any complications which is the norm.

The first chemotherapy drug is Fludarabine and is given from day -10 for 6 days. It was an IV infusion (through the Hickman line) and took about 30 minutes. They do prepare you in advance by giving you anti-sickness drugs and I was able to handle this well. No side effects at all. I was able to go home for a few hours on Saturday, Sunday and Monday, have my home cooked meal and get back to hospital at night. This was a great break and if offered I would take it without hesitation. It was strange coming back to hospital that second night, but this is the only chance you get to go home for a long time.

The second chemotherapy drug starts on day -6 for 2 days. This is Busulfan and is given orally. At this point, you are on two drugs for chemotherapy and your blood counts are on their way down and you are now in an isolated controlled environment. The party is over! I was able to handle this drug well too.

The chemotherapy is a carpet bombing raid and destroys all the good and the bad cells. It is a preparation to accept to new healthy stem cells from the donor. Stem cells are the ‘mother of all cells’ and produce new cells in the body.

Day -4 is when they introduce you to ATG Fresenius (Rabbit) an immuno suppression drug. This is to switch off your immune system so that it will not reject the donor cells. This is developed using a rabbit serum and they warn you of potential bad side effects. In my case, I was scared and at my wits’ end fearing the worst. Before they administer the drug you get anti sickness tablets and steroids to counter any reaction to the ‘foreign’ serum. The first dose is given intravenously over 12 hours and the first six hours are when most of the side effects tend to lift its ugly head. I got away lightly with some sickness and a mild headache. You continue with this drug for the next three days, Days -3 to -1 over a slightly shorter duration of 10 hours. I continued to get mild headaches and lost my appetite but it got better as the days progressed.

Finally, Day Zero arrives and as preparation you are given another immuno suppression drug, Clorosporin. This is given intravenously as well over 6 hours. Clorosporin is given to keep the donor stem cells in check. One of the major problems with a transplant is Host-Graf disease. It is when your donor cells take over your system and start to reject not only the cancer, but also other organs of your body. More on this in another posting. You will be on Clorosporin for a long time, while in hospital it will be given intravenously and later on in tablet form. They will constantly monitor these levels in your blood stream. I used to get a bad headache with Clorosporin but after about two days it went away.

I have talked about the transplant in one of my previous postings. Tomorrow I will write about the Cancer Support Group. The focus is often on the patient only but the people around you need more support and this is often overlooked.

There is a patient in another room and she was very sick. I was in a negative pressure room and had to move out to allow her to move into my room. When you are reading this blog, PAUSE, and say a prayer for her.

Talk to you again tomorrow. God Bless!

Today I am going to write about by illness. First let me give you a quick update. Day +4; two weeks in hospital about 4 more weeks to go. My energy levels are good and I am doing well. I had a reasonably good nights sleep. The problem is that they wake you up every two hours to check your temperature and pressure. They had to give me some blood last night as my Hemoglobin levels were low. Hemoglobin (HB) is the iron-containing oxygen-transport metalloprotein in the red blood cells.

They closely track 4 counts, the wcc (white cell count) which helps to fight infection, neut (neutrophils) which is a type of white cell and is the main agent in helping to prevent infection, hemoglobin and plts (plateletes) that help the blood to clot and prevent bleeding.

Leukaemia is a blood cancer. There are many types of Leukaemia and my type is classified as CML (Chronic Myeloid Leukaemia). The early symptoms for me were weight loss, exhaustion and night sweats. My wcc had risen to over 100 (typical range is (3.5-10). Usually the presence of the Philadelphia chromosome confirms that a patient is suffering from CML.

Cancer is the presence of abnormal cells. In the case of CML, two chromosomes, 9 & 22 translocate to form a fusion gene BCR-ABL. There are three phases of the disease, the chronic phase which the disease usually presents itself and may last for over 2 years before going into the accelerated phase and then the final phase is the blast crisis phase. They key is to prevent the blast crisis phase.

The recent new breed of tyrosine kinase inhibitor drugs (such as Dasatanib, Nilotanib etc…) has helped to very successfully treat patients with CML and get them into a state of remission in the chronic phase. In layman’s terms this drug breaks down the BCR-ABL so that it is able to kill them off.

In the acceleration phase, the fusion happens at a faster rate than at which the drugs can work. It seems like that there is consensus on the best cure at this stage is a bone marrow/stem cell transplant.

There may be some confusion about the difference between a bone marrow transplant and a stem cell transplant. In essence it provides the same result. New stem cells to the patient. With the advances in medical technology, they are now able to extract the stem cells from the donors blood instead of extracting it from the the marrow in the donors bone. They now do more stem cell transplants than bone marrow transplants.

Like with anything there is a grey area between the phase of the disease. It may not be crystal clear if one is in the chronic phase or the accelerated phase. When I was first diagnosed, my Consultant at St. Vincent’s Hospital felt that I was in the chronic phase of the disease and when I was transferred to St. James Hospital to be put on a new drug trial, my Consultant here had no doubt that I was in the accelerated phase of the disease. I will talk about this in another posting of how I went about wrestling this in my mind and coming to accept that the best course of treatment for me was the bone marrow/stem cell transplant.

Today is Day 3, Friday, December 16. Now we start to count up.  It is awhile since I last wrote and there is much to share and I will go back to Day Zero but before that, here’s a quick update. I am doing well so far, though my blood counts are dropping and I am now very susceptible to infection. They say to expect a tough few days ahead until the stem cells start to take hold and build up my immunity.

Transplant Day – Day Zero, Tuesday, December 13.  Most people say that this is an anticlimax. It was far from that for me, as it was a very emotional day. The stem cell donation has made it possible for me to live a longer life and look forward to walking Lesley-Ann down the aisle on August 25. I was in tears most of the morning 🙂

When the Doctor suggested that the best course of treatment for my condition was a bone marrow transplant, all my brothers volunteered without reservation to become a donor. The focus is always on the patient, and often we fail to ask what it might be like for the Donor. I’ve asked Mahesh to give us his thoughts of the whole process. They tested two of my brothers first for a match, Sheran & Mahesh and they were both matches! Mahesh was a closer match, and we share the same blood group as well and therefore Mahesh was selected.

The donation process is a relatively lengthy process. Mahesh was in Dublin 5 days before the transplant and had to come into hospital every day for two injections to increase his stem cells in the blood stream. On the day (Day Zero), Mahesh was in the hospital by 8 a.m. and hooked into a machine. They take the blood out of one hand, into a machine that collects the stem cells and it then returns the blood back into the other arm. He spent over 4 hours, sitting still, with his hands outstretched which I would have thought was a very exhausting session. After that they take the stem cells into the laboratory and prepare them for transplant. Very often, you end up with two Day Zero’s as the donor may not have enough stem cells. However, in Mahesh’s case, he was able to donate more than what was necessary, so that they were able to freeze the extra stem cells for later use if necessary.

In the meantime, back in my room, it was the wait. The previous night (Day -10) wasn’t a very good night as my blood pressure started to go up and there was a minor panic as they tried to bring it under control. In the morning all was back to normal. Pat came in at 8 a.m. with Mahesh and sat with me in the room. I started playing some religious music to get into the mood. It started with some old Jim Reeves Gospel music, with hymns like, Take my Hand Precious Lord and before long I was in tears. Pat switched off Jim and turned on the Power of the Cross to calm things a bit.

Mahesh came back to join me in the room around 1 p.m. having donated the stem cells. Pat had left by this time. I changed the music to Leonard Cohen and we relaxed to some soothing music, before Pat joined us again around 3 p.m. Finally, the moment arrived at around 6 p.m. when they brought the bag of blood and it was  transplanted via a transfusion by two nurses. Everything went very smoothly, pressure remained stable and this phase was a success. Yes, Moses Mahesh had parted the sea and I crossed the Red Sea. Ahead, the Promised Land. The journey is still long and hard but there is light at the end of the tunnel. Thank you for the NEW LIFE Mahesh, and thank you to all my friends and family for all the love, prayers and support. I am surrounded by a Wall of Prayers and so much Love that this is a Grace in itself. This much I know. I hope to write about this time of Grace later on.