Carla’s Words

Hello 
 
Thought you might be interested to see something my best friend, Carla, wrote after her journey up to after the Bone Marrow Transplant (bmt).
 
By the way, as most of you know by now, her bmt was a COMPLETE success and she surprised the doctors by her insanely remarkably speedy and great recovery! She said that the messages of people she knows and doesn’t know had a great deal to do with that, that the support and encouragement she got from them is part of the reason why she’d managed to pull through so well. So, thanks you guys, on behalf of a very thankful, grateful friend
 
The cancer’s gone and… mannnnn, what am I saying?!? I’m basically giving away the good parts of what she wrote: )

2 Lucky girls (Carla on my right)

 So, if you like, check out what’s she’s written. It’s all here below.

 If you’d like to leave any message for her, you can send it to me, so I can put it on her special private web-page. She’s planning to print out ALL those messages sent to her and keep them forever, so your words will serve her well long into the future
 
Thanks for all the support, it really, seriously moved me in a positive, inspiring way. I think this is just one of those examples in life where we get to play with our inner sense of responsibility towards humanity – creating more good (a VERY necessary thing).
 
Thanks guys for all the inspiration, and if you have any more messages for Carla, just send them along! I’ll be waiting : )
 
xxxxx
Rochelle

WHAT CARLA WROTE:

I am the lucky one. 

Rewind back to Wednesday 30th September 2009. Rob and I were in Professor Jacobs rooms hoping to hear some good news as we knew the PNH was in remission. So why did he want to see me again? Surely it can’t be bad news again. 

With a very sad face Prof Jacobs told me I had leukaemia, actually to be more specific Acute Myeloid Leukaemia, AML. He told us I had 3 months to live if I don’t start with treatment immediately and have a 50% percent chance of making it through the treatment. With that news he told me to be back at hospital Friday morning to insert a j-line.  One and a half days to get everything in order before my journey started, phone the family to break the news, go tell my boss I wont be at work for 6 months, buy 5 pairs of tracksuits to wear in hospital (as I refused to wear pj’s during my stay in hospital, only sick people wear pj’s and gowns in hospital)…

On Friday morning we went to the hospital to have a j-line inserted.  A j-line is the line they insert in your boob and goes directly to your jugular vein, this j-line will be used to for all the intravenous chemo and antibiotics I will receive in the next 6 months. I was wheeled into the theatre room and 15 minutes later had a j-line.  By the time I woke up I was in my new room in the bone marrow transplant unit (isolation unit).  Your first chemo is given in isolation as they have no idea how one will react and therefore they play it safe by putting you in the isolation ward, under high care.

My sister and my mom packed up my belongings from the ward I was admitted from and unpacked everything in my new room.  That is how my whole journey have been, not once did I have to worry about anything like my stuff being left in my old room, because the whole 6 months I have had my family and husband to care for me like a toddler.  

Chemo 1: I think this was the worse chemo.  Physically I was fine, weak but fine.  However, on the mental side, another story! Thank goodness Prof Jacobs believed in a holistic approach so within a day a saw a psychologist and a psychiatrist.  I must be honest all I could think of during that week was death and questioned if I was gonna die at 34 years.  I planned my funeral a million times.  But then I was released after 9 day stay in hospital and I got a bit of hope. 

Infection 1: Six days after chemo 1 at 1 in the morning, I developed a fever.  The rules are simple: you get a temperature of over 38 you report to hospital immediately. Luckily my stay in hospital was only 6 days. I had a skin infection.  Now I looked like a teenager with no hair and acne. A million bags of antibiotics were given to me via the j-line.  At this stage I questioned death more but a side of me started believing I will make it through this. During my stay in hospital my running club organised a shave-athon and run for me, runners that I have not seen in years come to the run, the boys shaved their hair and girls sprayed their hair pink for me, a fund raising event was held as well for donation to the Sunflower Fund (SA’s only bone marrow registry fund). This event made me see how my sickness did not just affect me, but I was part of a bigger community and a community that cared about each other.  Slowly my psychic started to change. 

Chemo 2:  A week after I was released out of hospital, I was back to start round 2. Again I re-acted fine physical but mentally I started living again.  I noticed things I did not see the previous 3 weeks and realised that sulking was not the way to get through this.  I was dealt this hand and it was a crap hand but I still lived.  Lived with a j-line inserted into my boobs, but lived and I was going to enjoy this ride from now on.  During this time Prof Jacobs received the results from my lumber punch and bone marrow biopsy and confirmed that I was in remission! The cancer was gone! I still had to go ahead and do the whole treatment as planned as leukaemia is a disease that can come back very quickly if not treated until the end.  After 9 days I was released out of hospital. 

Infection 2: Again, at 1 in the morning, 6 days after chemo 2, my temperature spiked so off we go to the hospital again.  Another 9 days in hospital.  However this was a bad infection and Prof Jacobs was worried about me so transferred me to high care in the isolation ward.  I did not realised how sick I was, but have subsequently found out that I have no memory of about 2 days, I picked up 7kg in 4 days from the swelling that occurred in my stomach but something happened and I was cured again, above all odds.  It was a scary time for everyone but for me because I never believed I was very sick. 

Chemo 3: A smooth ride again. 8 Days in hospital. 

Infection 3: On Sunday morning a week after chemo 3, I told my mom I was not feeling well and wanted to go lie down again.  As I stumbled to my room, I passed out. My mom was right behind me and caught me just in time as I passed out in the passage.  We phoned the hospital and they said to come in.  As I arrived at the hospital my temperature started to spike again and I was put back on antibiotics. 

I felt very guilty for getting the infection now, as the whole family was starting to arrive for Christmas. We realised that I was not going to be home for Christmas but it did not bug my family, they all just came to visit me in hospital and brought all my presents to me in hospital.  It was not the way I wanted to spend my Christmas day but that day I realised how lucky I was to have the family I have and how they never once were cross with me for ruining Christmas! After 9 days I was sent home, just in time to spend New Year’s at home.

Two days before Christmas Prof Jacobs gave me the biggest Christmas present, he told me they have found a suitable donor! This was a huge relief.  From this moment onwards I never got negative again.  God created a random stranger in the middle of Europe as a perfect match for me, and they found him within 2 weeks of searching the international donor list.  I know of people who after a year are still waiting for a match.  I realised how blessed I am.  God had a plan with all of this and I was just an instrument.  

Pre-transplant Chemo & Bone Marrow Transplant:  While in hospital with infection 3, I met a lady who had a bone marrow transplant.  I asked her to tell me exactly what I am about the go through and she scared the living hell out of me.  She told me about her journey and how terrible it was, from inserting a tube into her as she could not eat, how she could not walk and was weak like a kitten even after the transplant.  I had an appointment with Prof Jacobs where he also prepared me for the worse. Armed with this knowledge my family and I prepared for the worse. Well, nothing happened.  I had the chemo, I puked twice that’s about how exciting it got.  The transplant was a very emotional day, but nothing happened.  I was suppose to be sleeping the whole day and get weak, but that never happened, I got up from my bed and did a 20 minute walk in the isolation ward.  The family was all here for the transplant, and it was an awesome emotional experience.  The hospital provides this huge candle for the transplant ceremony that burns the whole day, all the staff come to your room and pray with the family.  A strange thing happened- in hospital you have priests and “dominees” that come to visit patients, but a NG dominee came to the isolation ward about 5 minutes before my transplant was about the start and asked if anybody needed him.  The staff came to ask us if we would like him to do the prayer before the transplant and we accepted gladly.  It was a very emotional moment, we all (including Eugene!) were crying like little babies.  The bond I experienced at that moment with my family and Rob was just amazing. I can never explain in words how much that moment meant to me.  

On day 8 after the transplant the head nurse came to us and told us like it looks my cells are starting to graft but the next day after a series of blood test they confirmed that I was grafting in record time! It was fantastic news!  I was released after a total stay of 24 days in hospital, just in time for my 10th wedding anniversary! 

Lance Armstrong in his book “ it’s not about the bike” says that “we ( meaning the cancer patients) are the lucky ones.”  It is true, I have learnt so much from having cancer and it have done so many amazing things that I can’t help but think that I am truly lucky to have had cancer.  I learnt that people die and it hurts like hell, I lost a new friend to AML, but there are people that live through cancer.  A 13 year old girl taught me about bravery and fight even if the doctors told her she had a 0% chance of living (she is in remission now).  It taught me that you don’t ever need to speak a word to a fellow cancer patient and yet the bond between you is something amazing.  I learnt the true meaning of the word family.  The true meaning of the promise we make in front of God “in sickness and in health”.  I am the lucky one.  

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Tags: acute myeloid, cancer survivor, carla graham, faith, hope, inspiration, inspirational, leukaemia, leukemia, rochelle van der merwe, survive