Day 3

So today is day 3 post transplant. I feel tired, and the chemo side effeects are getting less! Thank God! I feel very anxious and struggle to sleep and will once again tackle that with the doc this morning.

Looking foward to the days passing quickly and getting on the road to recovery. Looking foward to pain-free days, and to spend time with my family and friends. Pls excuse typos and spelling, My mind is confused.

Thanks for the support and prayers, Hugs, Fatima.

The point of no return

Today is day 3 of ny treatment. I'm officially at the point of no return, which means that if I don't get the transplant, there is no hope of me suviving. I feel both anxious and releived that I've finally reached the point that my remission is so close.

I've been following the blog of a youg lady called Jacqelyn who a stem cell tranplant done, about 100 days ago. She talks about being grateful for each day. That is how I feel. That all of lifes's blessings should be valued. My journey this far has been a trial of faith and perseverance. It is not fun to always be the party pooper when I can not join in, because I have so much pain and feel so exhausted, that I'm of the verge of collapsing. If only I had a gauge the clearly indicated when I'm at the end of my tether. Sort of a "don't ness with Fatima today" indicator!

Breakfast is here.
Ciao for now

Obrigado, thank-you, dankie and danke!

Being diagnosed with an untreatable form of Leukemia, feels like a death sentence. I don't say that lightly. I saw a very brief and dark future for me. The desperation I felt, was overwhelming and consuming. I saw no way out.

Over the last year I have constantly begged God for strength and for a miracle. He has answered my prayers by filling my life with true and honest Friends. These angels have helped me to get over the hurdles, picked me up when I fell down, and held my hand when it sometimes got too much.

When we first received the costing sheet for the search for a local and international donor, Jose and I sat with a calculator and added up the figures over and over.  It costs R 18,700.00 to test ONE local donor up to the point of a donor preliminary assessment. When we initiated the local and international searches, there were 82 Class 1 matches in South Africa and just over 3ooo international Class 1 matches.

Within the international donors, 22 where matches at a higher resolution.  That means that out of the 14 250 000 registered international donors, only 22 could be tested further. That’s only

0.000, 0154, 3%!

Of those 22, we were told that there might be 1 that could be a fully matched donor. Therefore a probability of 0.000, 000, 07% of finding a match. We decided to rather focus our time and effort on testing the 22 international donors, since those had already been tissue typed to a higher level.

Considering it takes about 12 weeks to test a donor to Class 2 high resolution, there was no way we could test the local donors, since I would run out of time, and we couldn’t financially contemplate such an endeavour.

By the Grace of God, my donor was found within the first batch of 3 international donors tested. It took just over 4 months to carry out all the tests. Those were very anxious months as you can well imagine!

I have spent the last year fighting with my medical aid, making endless calls, and pursuing a case against Bonitas through the Council for Medical Schemes. Every door has been not only closed, but locked shut! I have 2 arch lever files full of paperwork documenting my fight. I can honestly say that I have pursued every avenue, and it has left me exhausted. I have felt the utter desperation of counting the months as time passed, feeling so ill that some days, I felt like just quitting and admitting defeat. But no, I cannot quit, because I have so much to live for. And ultimately, only God can decide what the future holds.

On Monday, I will start my journey to recovery. It’s going to be rough, but I’m committed to seeing this through. On Wednesday I signed the Transplant Contract, which spelled out in detail that I will be undergoing a lethal chemotherapy regimen and all the dangers and possible outcomes of this transplant. BUT, it also states that it CAN work. I am focusing on that. If God built everything that is from a void, then certainly, if it is His will and through His grace, I see many sunshine days in my future. And after the rain, there is always a rainbow. It is important to not lose sight of that.

I want to thank everyone who has supported my family and I. There are so many people who have helped us in so many ways. To Victor, who organised the Leukemia Golf Day, to all the sponsors and those who supported the day, thank you. I owe you my life. I can never repay that debt, but I will try to pay it forward, by starting a support group for Leukemia sufferers.

I also want to say that without all the prayers and love that I have received, this journey would have been too much for me alone. Your support, means that I can look forward to a long life, and I will be able to fulfil the promise I made to God, that if he blessed me with a child, I would bring her up to love and honour Him.

Thank you.

2010-11-16

It is now just over a year since my diagnosis, and 5 days to go until I am admitted into hospital to start the process for my stem cell transplant.

Over the last year, I have often prayed and begged God for a miracle, and He answered my prayers in the form a very special German man. My “tissue-type twin” donor, who on hearing he was a match, immediately requested to sign the contract, to show his commitment as my donor. Donors are usually requested to sign the contract just before the patient is admitted into hospital. Until then, it is still on a voluntary basis, and he could potentially change his mind. The fact that he did it that day, at his request, showed me that he is truly committed to helping me, an unknown woman in South Africa.

My bed of Roses

A Bed of

Roses                                                                                                                                                  2010-05-06

In early September 2009, I remember thinking to myself that God had truly blessed me with a wonderful life. A caring husband, a beautiful daughter, and the best parents and family anyone could ask for.

For about 4 years, with ever increasing frequency, I had periods where I was so tired and had so much pain, that it took serious determination to just get through each day. I had been to see countless doctors, who diagnosed everything from Lupus to Rheumatoid Arthritis. I’ve always treated my body with respect, no drinking, no smoking, trying to lead a healthy lifestyle, but things just seemed to get more difficult and I had this ever increasing feeling of dread. I’d wake up in the middle of the night wondering why my platelet count was getting more and more elevated every time I went for blood tests. I felt a sense of urgency. That something horrible was going to happen.

We had planned an amazing trip to Mauritius for the end of September. Being a born organiser, I’d started to pack our bags, and day-dream about spending days laying on the beach relaxing. Then, I woke up on the 18 of September with excruciating chest pain. Trying to not be melodramatic, I went to work, and booked a doctor’s appointment for late that afternoon. After all, chest pain was no excuse for taking the whole day off, and it being wages day, meant that 37 families were depending on me to keep it together and make sure that their salaries were paid on time.

Perhaps, if I had taken myself more seriously, my doctor would not have diagnosed me with the beginnings of pneumonia, and would instead have paid more attention. That weekend, was a blur of excruciating pain. By Monday morning, I was in so much pain that I could hardly breathe, and my husband Jose, had to help me get dressed. We rushed off to the hospital, and I remember trying to sit up straight in the wheelchair as Jose wheeled me in. The look on the nurses’ faces when they saw me was one of shock, and I realised that I did indeed look as awful as I felt.

That week, after countless tests and blood draws, the doctors finally diagnosed me with a massive pulmonary embolism. Somewhere during those dark days in hospital, I had cardiac arrest. Through all that, I kept on reminding the doctor that I had to be better by that weekend, because Mauritius was waiting. The weekend came and went, and there I lay in the hospital on bed rest. I remember trying to negotiate with a nurse that if I took a quick shower, and got right back into bed, I wouldn’t be breaking the terms of my bed rest! She looked at me and told me that I had a small daughter to bring up. Taking a shower was not worth the risk of losing all of that. It dawned on me, that I am after all, only human, and that although blessed by God, I am susceptible to this body of mine reacting in a negative way. Not worth the risk at all.

The physician that was called in to treat me told me that I was a very lucky lady, and that God had to have a Plan for me. According to him, I should have died after that embolism and cardiac arrest. He couldn’t understand how I had made it that long with such an elevated platelet count which was by then 1 900. The normal range is between 200 and 450.

Almost 2 weeks later, the doctor eventually discharged me with instructions to go for an urgent bone marrow biopsy.

That bone marrow biopsy was a test for me, of how much pain a person can get through in order to be healed. It seems like a contradiction, does it not? The results, confirmed my nagging fear. Cancer. Chronic Myeloid Leukaemia to be specific.

It was then that my journey through life led me to meet people who are truly angels without wings. The oncologist, who assured me that there was hope in a wonder drug called Gleevec, the wonderful nurses at the oncology centre. My family, my friends who phoned daily and brought me countless home cooked meals.

After some time, life got back to normal. A normal which included weekly blood tests, and daily gene therapy, and almost daily pain killers, but a sort of new normal, which was after all not that bad, relative to what most cancer patients experience. After many sleepless nights of wondering if I was going to die, I made new plans to live. To live with cancer, was now possible. I could do it. There was hope.

I was there to hold Micaela’s hand on the first day of Grade 1. As I walked away, trying to not burst into tears, I begged God for his mercy, to let me see Micaela grow up. To be there for her and guide her as she grows into the beautiful woman I know she will be.

Everything seemed to be going along okay. I had gotten used to the constant pain and tiredness, and if I took my pain pills as directed by the doctor, instead of trying to see how few I could take and still cope, things were manageable. After 5 months on Gleevec, my oncologist told me that he had to refer me to a specialist, since my blood counts were all very low. Something was wrong, and I needed to see a haematologist. A new sense of urgency, and I again felt the horrible feeling of dread. Perhaps a new monster was waiting around the corner.

At the beginning of March, my husband and I enlisted the help of a GPS and set off for Pretoria to see a haematologist. I had no expectations, since by then I had become used to strange blood counts and as we sat waiting for the doctor, I remember looking at all the other patients, and feeling immense compassion for them. Most looked so ill, that they seemed to be clinging onto life by sheer determination. There were 2 young kids, teenagers, sporting bald heads and tired eyes. I prayed for God’s healing hands for all of them, especially the young kids, who should have been at home, doing homework, day-dreaming of young love, instead of at a hospital, in a room full of cancer warriors, fighting an invisible murderer.

While waiting for the doctor, we bumped into a friend of Jose’s whose sister had had a stem cell transplant the previous year, and had unfortunately relapsed. I felt immense compassion for her, thinking how sad it was that after such a great battle, they hadn’t been able to achieve an outright victory. I also said a silent prayer to God, thanking him that I was not walking that path, needing a transplant. How ironic, considering the devastating news the future had in store for me. 

The doctor found me to be very “interesting”. A term I don’t mind at all, but don’t want to hear, when it refers to me and cancer in the same sentence. If I’m going to have cancer, I’d prefer it to be of the common garden variety, the type that is well known and can be killed with normal standard cancer medication. We left late that afternoon, after a very long consultation and another bone marrow biopsy. As we left, I hoped that the fact that my blood results were so interesting was because of the Gleevec and I didn’t have cancer after all. Always an optimist.

Two weeks later we went back for the results. As I walked in I smiled at the doctor, and told her that I wanted her to tell me it was all a mistake. She looked very serious, and instead told me that she had only bad news. She said that I have a very rare form of leukaemia, a type that is not even properly described in medical texts. There is no treatment and no cure. A bone marrow transplant is the only option. At that moment, I started shaking, and for a few seconds, the shock of the diagnosis, took my breath away. I listened intently as she described the road ahead, and tried desperately not to cry.

She told us that we had to see the transplant co-ordinator before we left. It was a matter of urgency. It took every ounce of strength to sit still, to listen, to try and understand what it all entailed. Physically, the shaking continued, and emotionally, I waged a war against fear and desperation. All I could think about was that Micaela was far away in Vanderbijlpark, and that I had to pull it together by the time we got home. That my daughter needs me to be strong and to do whatever it takes to ensure that I’ll be here to see her walk into school on the first day of every year of her academic career. To be here also for the first time she falls in love, the birth of her own child. So many “firsts” still to come.

As we drove home, I phoned my father and told him the news. He started sobbing and I cried as I heard his anguish, thinking that no one deserves to be sentenced to death by cancer. Two years ago, I saw my own mom valiantly fight against this awful sentence. First, her body was taken over by pain, and then slowly, her will to fight, to live, was stolen from her, day by excruciating day, ever relentless, until she slowly gave in, and accepted that life here was coming to an end. On the last few days she spent with us, she often stared off into space, into a place only she could see, and assured us that she was okay, that she had no fear and that God was with us, and that He would lead her to a better life and place where pain and despair does not exist.

Since hearing that I need a stem cell transplant, much has happened in my life. I’ve learnt that there is genuine goodness in people, and that there are truly Good Samaritans around us. I’ve received hugs and prayers from so many people. Every day, at least one person says they are praying for me. When I asked for my friends and family to be tested as a possible match, the response was so overwhelming that my friends had to organise donor drive days with the local laboratories and blood banks since they couldn't cope with the number of people showing up to be tested. In the Vanderbijlpark/Vereeniging area, over 200 people where tested for me. My family in Portugal and France also asked all their friends to be tested, and on one single day, 83 members of my family and friends drove in a convoy to Coimbra in Portugal to register as donors.

Sr Hanelie (the Transplant Co-ordinator) phoned me frequently to say that the her fax machines and e-mail were full of tissue-type results of people who had been tested for me. She showed us arch-lever files full of results, some of people I do not even know!

During this time, I experienced the excitement of the co-ordinator finding a class 1 match on the very first day she went through the results of those friends who were tested as a possible match for me. This was the first time in South Africa that a class 1 match was found within the friends of the patient, and within such a short period of time. Unfortunately, after further testing, my friends’ tissue type turned out to not be similar enough for a transplant for me.

I spend my days trying to “live” my life, with a purpose, and to not only exist. I’ve made a vow to recruit as many people as possible to join our national bone marrow register, thereby improving not only my chances of finding a donor, but also of other people who are waiting for a BMT.

As I look back at my life, especially the last few months, I realise that my life, has been blessed immensely by God. Even when facing daunting odds, when I was too weak to stand on my own, there was always someone to hold me up, someone to make me smile, and someone to give me a word of encouragement.

Every night, before I drift off to sleep, instead of counting sheep, I close my eyes and count my blessings, and I can truly say with honesty, that I am “too blessed to be stressed”. I pray for strength for my family and friends as they walk this path with me, knowing that God is always by my side. I see Him in the love in my daughters’ eyes as she hugs me tightly, and whispers that she loves me. A pure, honest sentiment. An expression of love from an innocent child.

I see my life as a Bed of Roses. I love the way they smell, the way they feel when I rub their smooth, delicate petals against my face. That is how I see life. Delicate and tenuous, sometimes prickly when I least expect it, but always beautiful to behold as I marvel at my miraculous life, a simple rose, my blessed life.

Fatima

Too Blessed to be Stressed!