Remission 2011-01-26

On Wednesday 2011-01-26, I went to see the doc for the normal weekly consult and for the results of the bone-marrow biopsy. My blood counts are all normal and the biopsy showed normal bone marrow activity and was clear for cancer. When the doc said those words, I felt almost faint with relief.

I asked her if I can say I’m cured and she replied that only after 1 year of clear tests, will I be able to say that. I’m in remission. I felt quite deflated. I had thought the constant nagging fear would evaporate, but it’s still there. If the cancer returns, she said they will pick it up quickly and will then give me some of the donor’s fighter cells to combat that.

I’ve stopped the prograf and she said to expect to develop a rash, which will be quite itchy. She said that this will be graft-versus-host and will be a good indication that the transplant is working.

I feel like I undertook a huge project, did everything I could, gave it my all, and now it’s slowly unravelling. I also feel very tired, more than last week, coupled with light-headedness. I suppose I’m now experiencing PTD. Quite normal according to the counsellor.

On Sunday Jose shaved off the last scraggly hairs on my scalp. I then shaved his hair off, but his is already growing back! I hope mine grows back that quickly!

I now have a very shiny head. I’ve been going hatless, even when we go out. At first I tried the scarfs and hats, but hated the feeling, so bald it is. At the doc’s it's quite funny, because all the bald ladies give me a great big smile! It’s like we belong to a secret club!

I feel like I’m in limbo. Not going anywhere or moving forward. I’m stuck in never-never land. I wonder how I would feel if I stopped the anti-depressants and I think it would be quite scary to face all these emotions face on without that safety net. I am tired, physically and emotionally. It’s a mess of confused emotions that I’m trying to untangle.

7 weeks +

At last week's consultation, I had a bone-marrow biopsy. Somehow, this last one was the most excruciating of them all. This will indicate if my body is now cancer free. We will get the results on Wednesday, at my next appointment.

I feel optimistic, but can't help having a feeling of dread. It's like Peter trying to have enough faith to walk on the water. I strongly believe that God has not abandoned me, but I've seen how horrible things happen to really good people. I'm not more worthy than anyone else, hence the fear.

My blood counts are now all normal. I love that word "normal". I don't want interesting. Normal will do just fine, thank-you!

Still struggling with a throat infection and digestion problems.

To those who are upset that I have not answered e-mails or sms's, please forgive me. Most days I feel so tired, that just making a sarmie or a cup of coffee, leaves me breathless. I've read everything, and update here or on facebook. I feel tired physically and emotionally. It's like I used up all my "positiveness" in hospital and am now just going from day to day.

Last night, Jose shaved off the last prickly hairs on my almost bald head. And, then I shaved his head. So now there are 2 very bald and shiny heads in our home. You can call us Kojak, and Kojaky!

To everyone that has continued to pray for and offer support to family and I, thank-you.

6 weeks post transplant

Yesterday marked 6 weeks post transplant. I feel relieved that so much time has passed and I'm getting closer to the end of February when my quarantine will be lifted.

My blood tests came back normal! It's amazing to see that piece of paper with no "H"'s or "L"'s next to the blood results. I'll have a bone-marrow-biopsy next week. This will be to check that there are no cancer cells left. I feel anxious, excited and hopeful, all at the same time.

I was relieved that the chemo room had the Polygam this week. It's an immune system "booster" and there have been 2 appointments where I didn't get the infusion because there was no stock.

Still struggling with food-issues. It's like my stomach just can't digest food some days. I woke up yesterday feeling nauseous and it continued throughout the day and night. I stuck to fruit today, but still feel nauseous.

Thanks for all the support and prayers. I feel connected to something much greater and it makes the difficult days easier to get through.

Day +34

Today is day 34 post my transplant.

I still feel very tired, and the smallest physical exertion leaves me gasping for air. Walking around or standing makes me feel dizzy and I start seeing black spots.

At last Thursday's consultation, the doctor told me that the due to the blood clot I had in my left lung while in hospital, I lost another third of my left lung. This is bad news considering the lower lobe is still showing damage from the previous embolism. She also put me back on warfarin and clexan injections. These go in around the belly button and feel like wasp stings. The doctor says that without the warfarin there is a definite danger of developing another clot and she does not want to take any chances.

I also have some graft-versus-host itchy spots on my head. Nothing too bad, and nothing to worry about.

Over the last few days I've been able to swallow the 20 tablets for breakfast without any mishaps, though I have to take them slowly and spaced out over about 15 minutes. It feels like quite an achievement to get them all down without loosing my breakfast!

It's great to be home, in my own bed. I feel safe here and this has helped me to heal. The day I was discharged I felt ecstatic and petrified at the same time. Driving home, I thought about how insignificant we all are, so concerned with our own lives, often taking little time to think about the miracle of how God knows who and where we all are.

My greatest fear is picking up an infection, and having to go back to hospital. The first week after I came home I got gastro-enteritis and had to go to the local ER. When they admitted me, all I could think about was all the contagious people in hospital and that the nurses touch all the patients without scrubbing-in between patients! I was very stressed about that and when the doctor did his rounds that evening I begged him to let me come home.

Christmas and New Years Eve were spent at home, just the 3 of us. I missed my family and friends, but focused on all the years we will have ahead. I especially missed my mom who passed away three years ago this December, and my mom-in-law who was like a mother to me. I thought about how cruel life can be, and how cancer has decimated my family.

I'm now almost bald, though there are still a few prickly hairs left on my head. My chemo burns are pealing, leaving raw skin underneath. Not at all pleasant. My j-line dressing also pulled away some of the skin and it's now developed a sore, just next to the j-line. These things too, shall pass.

For the year ahead, my goals are to get through the next 8 weeks of weekly doctor's visits, to be cancer free at the end of February, to get back to work and to take up my new life.

Micaela constantly comes to hug me and tell how much she loves me and that she's so happy to have me home. Jose thinks I look great bald and has paid me numerous compliments about my new appearance. With a man like that by my side, I can only feel great.

Thanks to everyone that has been praying for me, sending sms's, phoning and sending meals. Your support makes me feel humble and so blessed.

Wishing everyone a year ahead full of health, joy and happiness.

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.