Author: Raomal Perera

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Transplant Journey

A Time to Laugh and a Time to Dance

Today, December 13, 2012 is the first anniversary of my stem-cell transplant. I want to thank all my family, friends and the care staff at St. James Hospital for their prayers, love, care and support, without which I won’t be here today.

A very special thank you, to my brother Mahesh, who unselfishly, without being asked, stepped forward to donate his blood. In fact the procedure was harder on him than on me and this may have been over looked by me in my postings. Mahesh had to return again a few months ago to give more blood and on that occasion he had to get a line put in to one of his main veins. Not pleasant! Words just seem insufficient but it is all I’ve got. Thank you Mahesh.

A very special thank you to my consultant, Dr. Conneally too. Many of you will know that I grew up surrounded by doctors and my father, Dr. Cyril Perera, was an exceptional doctor and I would class my consultant in that same category. I am very fortunate to be under her care. She is not just smart (very high IQ) but has that empathy with the patient (high EQ) that makes her an exceptional doctor.

Apart from the one minor setback a few months ago (which I have still to write about), I am making good progress.

My BCR-ABL count (cancer cell count) is now down to 0.003. This is on a log scale and is a pretty low number getting close to insignificant. The next step is to find out if it is the medication (Dasatanib) or is it the Lymphocyte infusion, i.e. Mahesh last donation of blood, that is helping me win this battle. Ideally, I should stop taking the drugs and start fighting the cancer with my blood. These drugs all have side effects and long term use of them can damage your liver and/or kidneys. The low BCR-ABL count is also good news.

While writing this blog, I just remembered that the doctor MAY have reduced my Dasatanib dose by half and in my excitement of the news, I have yet to do this and that was two weeks ago. Wow, all I can say is thank God for blogs, but she won’t be a happy camper as we were going to test the BCR-ABL count next Tuesday to see if it continues to remain low. I need to get a grip on myself. Pat usually comes with me for my visits, but on this occasion she was not there.

The third bit of good news is that I have started my inoculations. Since I’ve had a system reset, I am back at ground zero. I have to start all the vaccinations from scratch. These are the vaccinations for Diphtheria, Tetanus, Polio, Whopping Cough, Haemophilus influenzae type B vaccine (Hib), Pneumococcal Disease (PCV 13), Meningitis (ACWY), another Pneumococcal Disease (PPV23) and Influenza (flu jab). I will get these over the next 6 months. Twelve (12) months later, I will have to get the MMR. They avoid giving the MMR until later as it is a live vaccine.

Were you aware that babies get all these vaccines? I had to get three separate injections last week and had to provide three limbs for it! Two hands and a leg! Make sure to warn me if you know anyone with Measles, Mumps, Rubella or Chicken Pox. I have to avoid contracting those childhood diseases.

A good way to end this blog is with the words from Ecclesiastes. “There is a time for everything, and a season for every activity under the heavens; a time to weep and a time to laugh, a time to mourn and a time to dance. Today I laugh and dance with you!

That’s all for now folks. The next post will be about the ‘derailment’, the minor set back last month.

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Blog

The Wedding

It is early Sunday morning (09 Dec 2012) and I’ve just dropped my brother Mahesh at the airport. Mahesh came over to see me this week-end. The house is quiet and a great time to write a new post. There are a number of things I want to write about, but I will start by writing about the highlight of the year; Lesley-Ann and Mike’s wedding on August 25, 2012.

Monday April 11, 2011 I was diagnosed with CML (Chronic Myeloid Leukaemia) and my first goal was to get well to walk Lesley-Ann down the aisle on August 25 2012 and thanks to all your support and prayers I was well enough to do this. On the day, Lesley-Ann was saying Dad, “walk a bit faster”, but I wanted this moment to last as long as possible’ I had dreamt of this moment since she grew up to be a lovely young lady there was no way it was going to end too quickly! You may be able to spot this as Lesley-Ann is looking ahead while I am soaking up the atmosphere!

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Saturday, the morning of the wedding.  The months leading up to the wedding, Lesley-Ann seemed to be ‘stressed out’. I suggested that we should get a Project Manager just for the day on Saturday, so that she can forget about everything and just enjoy the day. She was not interested, and just like many of my other ‘great suggestions’ this too was discarded very quickly 🙂 The night before (Friday night) we all got a detailed Agenda from Lesley-Ann. It looked liked the day started at 8 a.m. and there was something for someone to do every half an hour.  That is Mike’s family, who were at the hotel where the reception was taking place and us. We were awake around 8 a.m. on the Saturday and it was like Lesley-Ann had just turned off a switch, she was completely relaxed. There were all sorts of ladies coming in at all hours of the morning, hair dresser, make-up lady, flower lady and to add to the chaos the photographer. But all was calm, so much so we forgot all about the time and had to rush to get ready for the wedding.

Here are some photographs that capture the atmosphere that morning with all of us completely chilled out!

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We did finally get to the church (Foxrock church) about 20 minutes late. Lesley-Ann had planned for us to get to church 10 minutes late. She was radiant, smiling without a care in the world. I thought that I would have very mixed emotions on the day, but actually I was so happy that that I did not feel sad at all. The church service was fabulous as it was personal. Mike’s sister Bethan sang ‘Bread of Heaven’ , Lesley-Ann’s sister Shereen sang ‘ Ave Maria’ and Lesley-Ann’s friend Margaret sang the Offetory Hymn. Lesley-Ann’s God Father, my brother Shammil did a very personal Communion Reflection for the couple.  The music arrangement was by Margaret.

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This is another short clip that captures the emotion of the day. Lesley-Ann’s friend Margaret arranged all the music for the Church service and it was fantastic. Here Margaret gets emotional herself as she tries to hold back the tears!

This is a short clip of Bethan, Mike’s sister singing ‘Bread of Heaven’.  I like the words; “I am weak, but thou art mighty; Hold me with thy powerful hand: Bread of heaven, bread of heaven. Feed me till I want no more”. This is a Welsh hymn and represented the Welsh side of the family. The two ‘clans’ are from Wales, Ireland & Sri Lanka.

We’ve had a great laugh watching my ‘Mr. Bean’ moment in church. Shereen is singing Ave Maria.

The reception was at the Summer Hill House in Enniskerry, Co. Wicklow (South of Dublin) and there were about 120 guests at the wedding. These are some family photographs from the day. The little figues (Mike & Lesley-Ann), the map of the world showing all the places where the couple had visited together and the tree are all Peter’s handiwork (Mike’s Dad). The tables were all named after a city and there was a small gift from that city in each of the tables. A very nice touch!

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This is a good way to end this post with the Last Dance before the band left. Unfortunately, I did not have the energy to stay awake to watch this. This gives a good flavour of the day. As Lesley-Ann and Mike said in the card, it was truly a day of celebration with Friends, Family and Laughter.   Thank You Lesley-Ann & Mike for a very memorable day that I will treasure for the rest of my life.

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Uncategorized

The Oak Tree and the Cypress grow not in each other’s shadow

Dear Lesley-Ann, this is the second of the two missives from the Prophet. I was re-reading the book again this morning. It is a bit like reading the scriptures. My take-aways from this missive will be very different to your take-aways. Enjoy.

Kahlil Gibran on Marriage

You were born together, and together you shall be forevermore.
You shall be together when the white wings of death scatter your days.
Ay, you shall be together even in the silent memory of God.
But let there be spaces in your togetherness,
And let the winds of the heavens dance between you.

Love one another, but make not a bond of love:
Let it rather be a moving sea between the shores of your souls.
Fill each other’s cup but drink not from one cup.
Give one another of your bread but eat not from the same loaf
Sing and dance together and be joyous, but let each one of you be alone,
Even as the strings of a lute are alone though they quiver with the same music.

Give your hearts, but not into each other’s keeping.
For only the hand of Life can contain your hearts.
And stand together yet not too near together:
For the pillars of the temple stand apart,
And the oak tree and the cypress grow not in each other’s shadow.

Let their be spaces in your togetherness, dear Lesley-Ann

Thank you for sharing your big day with all of us.

We wish you all the blessings for a very happy life together!

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Uncategorized

When Love bekons to you, follow him

I said that my next post was my speech on Saturday. A change of mind. Instead I am writing a letter to my daughter Lesley-Ann, before her big day! These are not my words as I am not very original in my thinking. All the same I think it is great advice.

Dear Lesley-Ann, this is the first of two missives from the Prophet.

I came across the book “The Prophet” when I started college (age 18) and found it a great source of inspiration. I hope you like these two missives from the book.

Kahlil Gibran on Love

When love beckons to you, follow him,
Though his ways are hard and steep.
And when his wings enfold you yield to him,
Though the sword hidden among his pinions may wound you.
And when he speaks to you believe in him,
Though his voice may shatter your dreams
as the north wind lays waste the garden.

For even as love crowns you so shall he crucify you. Even as he is for your growth so is he for your pruning.
Even as he ascends to your height and caresses your tenderest branches that quiver in the sun,
So shall he descend to your roots and shake them in their clinging to the earth.

Like sheaves of corn he gathers you unto himself.
He threshes you to make you naked.
He sifts you to free you from your husks.
He grinds you to whiteness.
He kneads you until you are pliant;
And then he assigns you to his sacred fire, that you may become sacred bread for God’s sacred feast.

All these things shall love do unto you that you may know the secrets of your heart, and in that knowledge become a fragment of Life’s heart.

But if in your fear you would seek only love’s peace and love’s pleasure,
Then it is better for you that you cover your nakedness and pass out of love’s threshing-floor,
Into the seasonless world where you shall laugh, but not all of your laughter, and weep, but not all of your tears.
Love gives naught but itself and takes naught but from itself.
Love possesses not nor would it be possessed;
For love is sufficient unto love.

When you love you should not say, “God is in my heart,” but rather, “I am in the heart of God.”
And think not you can direct the course of love, for love, if it finds you worthy, directs your course.

Love has no other desire but to fulfill itself.
But if you love and must needs have desires, let these be your desires:
To melt and be like a running brook that sings its melody to the night.
To know the pain of too much tenderness.
To be wounded by your own understanding of love;
And to bleed willingly and joyfully.
To wake at dawn with a winged heart and give thanks for another day of loving;
To rest at the noon hour and meditate love’s ecstasy;
To return home at eventide with gratitude;
And then to sleep with a prayer for the beloved in your heart and a song of praise upon your lips.

And so dear Lesley-Ann, wake at dawn and give thanks for another day of loving and then to sleep with a prayer for Mike in your heart!

Categories
Transplant Journey

The War is not over!

The celebrations had begun as we thought it is all plain sailing from here. We were on the home stretch we all thought. Well, the cancer cells said otherwise; “you may have won the last battle but the war is far from over”. Today, Thursday, August 16, 2012 I had a DLI. A topup! DLI stands for Donor Lymphocyte Infusion.

Why? Because my BCR-ABL count has gone up again. BCR-ABL is the cancer cell. The count is still at very low levels but it is the trend that seems to be worrying my Consultant Haematologist. My BCR-ABL reading before the transplant was 47 and soon after the transplant it dropped to 0.04. It then steadily rose to 0.1, 0.21 and then 1.04 at which point I went on Dasatanib, a cancer drug. Dasatanib is part of the tyrosine kinase inhibitor family of drugs. They help to break down the BCR-ABL (cancer) cell so that the blood stream can then attack it. If you were in the chronic phase  (early stage) of Chronic Myeloid Leukaemia (CML), you are treated with these tyrosine kinase inhibitors. They help to control the growth of cancer cells.

Dasatanib helped to bring down the BCR-ABL (cancer cell) count to 0.1 (from 1.04). However, over the last 8 weeks it has started its slow rise again, this time from 0.1 to 0.16 and then 0.55. They measure these on a logarithmic scale.  I am not sure I fully understand the implications of using a logarithmic scale.  When we are talking of such great variances, I can see why they would resort to using a logarithmic scale. To fully understand its significance, I’ll have to go back to my Consultant.  What does it mean to have readings that show 47 (before the transplant), 0.04, 0.1, 0.21, 1.04, 0.1, 0.16 and 0.55 in a logarithmic scale as opposed to a liner scale?  My Consultant says that it is only a molecular relapse as the blood counts are normal.

Donor lymphocyte infusion is basically getting more of my brother’s blood cells. The idea is that lymphocytes from the original stem cell donor (my brother) are given through a drip, after the transplant, to augment an anti-tumour immune response (i.e. fight the cancer cells) or ensure that the donor stem cells remain engrafted. These donated white blood cells (lymphocytes) contain cells of the immune system that can recognize and destroy cancer cells.

The goal of this therapy is to induce a remission of my cancer by a process called the graft-versus-leukaemia effect (GvL). The donor blood cells can attack and control the growth of residual cancer cells providing the GvL effect. It is hoped that the donor lymphocyte infusion will cause GvL and lead to a remission of my cancer

Usually patients might require standard chemotherapy, to reduce the amount of cancer cells they have prior to their donor lymphocyte infusion.  In my case, my blood counts are normal and therefore there was no need to go for chemotheraphy. This is only a small setback.

In the past,  the only treatment option that offered relapsed bone marrow transplant (BMT) patients hope of a cure was another bone marrow transplant. However, the risk of serious, life-threatening complications after a second BMT is great. One strategy of managing relapse, donor lymphocyte infusion, might eliminate the need for a second BMT in some patients.

It is probably not entirely correct to say that I had a DLI today as what I got was a combination of Stem Cells and Lymphocytes. Today I got 0.5 l. They also increased my dose of Dasatanib from 50 mg to 100 mg. They will look for donor lymphocytes from Mahesh, so that they can give me just the lymphocytes. Unfortunately, they will have to do the virology tests on Mahesh again before they take more cells from him. This time he will not need a GCSF (Granulocyte colony-stimulating factor) prior to donating the lymphocytes. What this means is that it won’t be as uncomfortable as the previous time when he donated the stem cells.

They will test my BCR-ABL (cancer cell) count in 8 weeks’ time and if there is no improvement I will get a second DLI. The next time it’ll be1.0l (double the dose) and if this does not help they will increase it to 5l (5 times the dose) after another 8 weeks.

It is possible to have complications after a DLI. The main one is the famous ‘Graft-versus-Host’ (GvH) disease which I’ve managed to avoid up to this point.

The good news is that this is only a minor setback.

Anyway, next Saturday, August 25, is my big day. Walking Lesley-Ann down the aisle at Foxrock church and Shereen will be singing Ave Maria. I can picture it all and it’ll be a great day for celebration. My next post will be my speech!

That is all for now folks!