Migrating the blog !

Hi Guys!

Thanks for reading my blog I really really appreciate it. I hope you had a great Easter :)

I am migrating the blog to another platform please refer to this link: https://mypositiveleukaemiaallstory.wordpress.com

Cheers!

Barbara Maffei

The Relapse

Well, I got the dreadful call from my specialist: "your blood counts don't seem normal, you better come to hospital tomorrow". 

And like that I has hospitalised on September 13th 2016, and all started. 

It's still feels unreal and is really hurtful and frustrating to write about the beginning of the process but those were feelings I had to overcome and focus on the positives of it.

So:

1. I was alive and there was a solution for everything 

2. My family and friends were with me

3. I was in a great hospital 

4. I felt well (bone pain was tolerable with meds) 

In conclusion everything was good! That was my way of thinking out of the negative thoughts that came from time to time to hunt me.

You can do it, I believe in you

Barbara 😘

Happy New Year 2015! New goals and new opportunities

Hi there,

Its been a while since I wrote my last post.

I had kinda of a blockage... a writing blockage but the New Year helped me realise everything I could write about.

At the end of last year I started working out more regularly, I moved to another suburb and I have been working part time on our online store and I feel really accomplish about it.

Working out!

Although I went back to take steroids due to a GVHD (Graft versus Host Disease) episode I had by the end of the year I'm focusing on the positive things of my life, like for example: Being Alive which is very important ;)

Black Swan Park - Queensland Australia

On the new complex that we moved to there is a small gym which I use when is too sunny to walk around or is raining, otherwise I like to walk and look at the flowers on the street or the animals I can see around. I take that time to practice gratitude for everything I see around me and that uplifts me pretty good.

I have been more involved in the design, customer service and selling around our online store: Energia Sports, and I am very grateful about it every client I encounter is a new friend and the messages we receive from them are very encouraging to keep going and to strive to make it better every day.

Energia Sports - Online Triathlon Store

I'll start blogging more regularly, and please don't hesitate to ask me any question because I'm willing to talk, response or clarify any experience about my Positive Story :D

And if you read me leave me a comment below about what you would like me to write about.

Keep well and think good things!

Cheers,

Barbara :)

No more medicines! All is well in my life :)

No more Medicines!

After two years recovering from all I'm feeling so good you won't believe it :)

So yes, no more medicines means that I am off the cyclosporine which was damping down my immune system to prevent any GVHD (graft vs. host decease). I still have to live my life enduring the chronic GVHD but I am grateful that I am alive to know it.

Nowadays I'm focused on our online triathlon store, learning photography and looking for a job.

I am living a very happy life, I do a lot of positive visualisation and have a lot of happy thoughts, as should you ;)

I trained for 12 weeks (Fit to Thrive Program from the Leukaemia Foundation), along a very good group of blood cancer survivors just like me, the training helped me to gain my strength again after all the chemo and radio I was put trough before the transplant and during the whole process. I felt washed out and without any energy at all. We had a great trainer and we formed a great relationship I was very motivated to go to the sessions. I will definitely recommend to everyone going trough a transplant to take it easy (be patient) otherwise you could feel frustrated (as happened to me at the beginning).

The Internationals: Niclas, Daniella and I
(some of the survivors I trained with and became friends as well)

Sam Hall our trainer - Exercise Physiologist (ESSA)

I promise you, YOU will get there, some people will achieve it after 6 months, others after 2 years... Like me and I am proud of myself for making it.

Every day after every meal I think like a reflex: 'I've forgotten the pills!', then I calm myself... there are no pills anymore, you are free.

So I plan to extend my wings and fly!

Thanks for reading my post, feel free to write whatever you feel.

If you want to talk to me about my process or if you are going trough the same let me know.

The Allogeneic Bone Marrow Transplant

My Allogeneic Bone Marrow Transplant workup started on May (2012) when I had to be tested all around just to check that my body was in good shape for the chemotherapy, radiotherapy and finally the transplant.

All began with several doctors appointments and different tests: Blood Tests, TBI Planning, ECG,  Chest X-Ray, Gated Heart Pool Scan, Appointment with the Bone Marrow Transplant Coordinator, Dentist, Breathing Test, Gynaecologist, BMT Clinic Appointment, Social Worker Appointment, Skin Check, Overnight Urine Test, Allogeneic Bone Marrow Transplant Patient Education, and a Lumbar Puncture.

The protocol of my Transplant was a CY/TBI (Cyclosphosphamide/Total Body Irradiation) in I had to be admitted 6 days before the exact day of the transplant.

DAY -6: Commence anti nausea medication
DAY -5: Begin Ondansentron IV twice a day, Mesna IV over 30min, Mesna IV over 23.5hrs, Cyclophosphamide IV over an hour
DAY -4: Ondansentron, Begin Mesna Infusion, Cyclosphosphamide IV
DAY -3&-2: TBI Morning, TBI Afternoon
DAY -1: Commence Cyclosporin IV Infusion over 12 hrs, TBI Morning, TBI Afternoon
DAY 0: Cyclosporin (CSA) IV and 11:00am HAEMOPOIETIC PROGENITOR CELL INFUSION
DAY +1, +3, +6, +11: Methotrexate IV injection over 5 min
DAY +2, +4, +7, +12: Folinic Acid IV injection over 3 min

It was an exciting but quite scary process.

I definitely though it meant my cure but I learnt it was a very painful process.

Starting with a very high and strong dose of chemotherapy followed by total body irradiation (radiotherapy) was a very debilitating process although I never felt it right away but in the following days.

I didn't suffered the side effects I was so aware (not scared) of, didn't have the horrible nausea or the burns because of the radiation, so I thought that was the toughest part.

DAY 0 (7th June 2012) being the most important as I was to receive the New cells or the cell infusion I was very excited, but I couldn't see anything because I was sedated and blissfully sleeping. I didn't felt anything (good or bad) nothing at all.

When I woke up I was still the same, same feelings, skin and face... really nothing special happened.

The pain started a few days later and increased quickly I lost all the internal lining from the mouth (which swallowed a lot), trachea, stomach, guts, and all the rest. I had to be connected to a pump that constantly fed my with pain reliever, which made me hallucinate and I have a very few funny stories from that time.

I couldn't really eat it was a very painful exercise and I had to be fed trough IV but I tried to keep the stomach working a little bit by eating yogurt in the morning and ice cream the rest of the day.

With a lot of free time in my hands and not leaving the hospital room (because of the weakness) I started to do Sticky Mosaics (no one is paying me for this) and that kept me pretty entertained.

I believe this was the time I felt the loneliest and saddest of my whole treatment, because I was not regaining but loosing the little strength (and hair) that I had gained before this last process started. Before the transplant I have been in remission for quite a long time and the doctor stopped the chemotherapy for a bit so I could regain strength to face the transplant and I felt like ME again: strong, no more chemo brain, beautiful, hairy, and happy. I was home with my sister and husband and I could enjoy being alive again, so I believe that small amount of freedom before the transplant gave a sour taste when I was back in hospital.

I won't say it was a 'walk in the clouds' because loosing all your internal lining is pretty painful and being in a state in which is preferable not being among a lot of people is lonely. But I convinced myself this was the last time I was going to be admitted in a hospital and had to be content with it.

I completely decorated my room with my colourful mosaics and that helped me start conversations with my usual visitors: nurses, cleaners, doctors, anaesthesiologists, x-ray people, cleaners, food people, my sister and hubby.

By the end of the almost five weeks that this process lasted I made myself eat out of bed (almost) every time or at least in the morning (when I had more energy), walk to the toilet,  shower and get dressed by myself, I must confess it was easier to wait until someone (usually my sister) came to visit me and expect them to help me, but I had to follow a routine every day by myself otherwise if no one came in to visit I had really nothing to do.

Myself the very first day hospitalised 

Myself the very first day hospitalised

I couldn't really talk to my neighbour (next door room) because if I was awake he was Neutropenic or very sick and when he was up and about I was heavily sedated so that friendship never flourished.

Little by little I started to feel better, the pain was easing and I didn't feel I need to use so much pain killers, and I was told to pushed myself to eat a little bit more so I could be out of IV food. Eating only liquid at the beginning the Nutritionist kept an eye on me every day (energy levels, weight, and amour of food taken) and finally I could be disconnected of my pain killers pump and the IV food.

When I started swallowing pills again was very weird sensation but I felt really happy to be normal again, being able to swallow food and pills was like learning to walk for a baby. My lips and mouth were not that soared so I started to regain control of them and use them.

By making small steps I was feeling better more energised and ready to go home, when I got the news that I was free to leave the hospital I was so happy I cried (a lot).

Since that day I never been in a hospital room again, I am home... sleeping in my bed, creating my new routine, and finally regaining my strength to feel alive again!

Every day I thank (the universe, God, whatever you want to call it) that I am alive, that I had a second chance and I won't take my life for granted never again. I make a very long list every morning and every night about what I am thankful for, starting from every working piece of my body and ending with anything that is making a sound around my house. There is so much to be thankful for, and every day I will remember it and say it out loud.

How to live with a Chemotherapy Portable Pump at Home

We got home. I felt mixed feelings... I was happy because I was going to sleep on my bed along with my husband and I was very scared because I had no longer the nurses to look after me and my health 24/7 and that was a big change at the beginning.

I went home with the Hickman's line on my chest and my sister was trained by the nurses to clean it every day. After every shower she had to lift the adhesive and clean underneath, it wasn't painful but at the beginning it feels weird.

We had to follow strict times for the medicines and keep checking my temperature in case of a fever as I was neutropenic most of the time. Being neutropenic all the time means no close contact to any human beings  or animals, have everything cleaned and disinfected to the maximum as one do not have any defences at all to fight a virus or any disease. So you have to change the bed sheets after 2 days, use towels just once, have all surfaces sterilised and clean methodically, at the end I assure you will be obsessed with cleanliness around you.

I had to go to daily check ups at the hospital and spent almost the whole day receiving treatment, between the blood test, chemotherapy and weekly change of buns of the Hickman's line, the days stroll. Sometimes I needed blood transfusion that meant: stay the whole day until 3 or 4 pm at the hospital. Which was very hard on my sister and husband who came with me every day for treatment and most of the time felt sleep on my side. I was probably on a comfy bed or a lazy chair and my heart fell for them.

Going to hospital every day was at times exhausting, getting out of bed very early, swallow breakfast in order to take a bunch of pills and then drive trough the streets of Brisbane to get in time. My husband had to skip work every single day a few hours just to drive us (my sister and I) to the hospital and the go back to work to finish the shift. Not easy at all. But I won an Easter Raffle and went home with a lot of chokies (chocolates), rabbits and a beautiful basket, I was so happy when I saw my name on the prize that I almost cried.

And the Winner is... Barbara Maffei

I was so happy! I totally saw myself winning when I bought the tickets

I don't remember any downside of having a pump any than having a shower with it. I could sleep comfortably (usually at 6 or 6.30pm I was out...sleeping), watch TV, do my nails. I saw it as something I needed to be alive not as a bad thing, most of like a little companion.

In the afternoons I watched a LOT of movies most of them animations, I really love them so I had time to catch up on old movies and comedies I never saw.

Actually I don't remember all I did quite clearly, my husband says I used to space out a lot and fall sleep all the time. I was just happy to be home with my family, eating home made food, watching funny things and doing my nails using only bright colours.

My Sister's and my Nails, perfectly done by her :)

I kept eating my food as it was a medicine so that wasn't a big issue just another task I had to complete during the day. Although my sweet tooth helped me to keep indulging on Tim Tams and other things like yummy doughnuts.

I started to re-read the book You Can Heal Your Life (Louise Hays) and actually doing the affirmations gave so much strength and happiness. Before that I never realise how many things I had to be happy for or to be grateful of, that was a big eye opener for me at that time.

I kept all my affirmations from that time and read them from time to time and that gives me hope and a lot of happiness.

Experiencing a life threading illness is a tough reality and I found no use to think: Why me? Why us? On the contrary I just keep thinking about what tomorrow held for me and my family. What would I do when everything was over and dusted, like going for walks at the mall or meeting my friends. Always have faith and it doesn't matter which religion o God you adore but to have blind faith on getting better and be really strong to keep it together.

Enjoy the little things. Think of what really makes YOU happy and go and do it. I enjoy watching TV and movies that really makes me happy and it didn't require much energy and gave me really positive ideas and thoughts to concentrate on. Like all those Disney movies hold a message and I kept thinking on them when I was lying in bed or having dinner.

Having friends over is often very good for your soul, so you don't feel isolated

I know I already said in a previous post I didn't see drama movies or depressing documentaries, it might sound like taking it to an extreme but that worked for me, I never felt depressed or really sad during treatment at home. I didn't do the finances at home during difficult times, luckily my husband took care of everything. But I personally find that stressing so I didn't want to do anything with that. I concentrated on the good things happening to me at that precise moment (mainly daily events) and that is my little advise when your future is not that clear, concentrate on NOW, the future doesn't exists yet.

See you on the next post and remember to Love Yourself with All You Heart and Enjoy the Little Things!

My life in Hospital: How I decided to have my head shaved

Even though I do not remember the exact date, after two weeks of having chemo I noticed that I was losing my hair, I found strains of hair on my pillow every morning and it wasn't that bad but before it became a nightmare I decided to let go of my hair. One morning I talked to a nurse about shaving my head, and she called Adam. He came in with scissors and a shaving machine, I took the decision by myself, and I told no one of my family or friends, that idea just snapped on my head one morning.

He started to cut my hair, and I remember the scissors couldn't do the job because I had so much, so it took a lot of time. He gave a pixie cut like Mia Farrow’s hair, but as I run my hands through my scalp I could feel the hair falling on my hands… so I decided to have it really short or ‘0’. He kept saying like: “It’s a big change… are you sure? Aren't you going to cry or get depressed?” And I was like: “Don't worry keep going I know where I'm going”. The truth is that I really didn't had an idea of what it felt to have NO HAIR, and personally I felt like being nude and cold all the time.

My Shaved Head

The first days in the shower I usually forgot and several times tried to shampoo my (non existent) hair, and I also tried to touch it, comb it, it was like a phantom limb feeling, that’s how I can put it.

One big thing about not having hair was that I discovered that I had a really good looking scalp! I loved my head. Every night I put cream on my scalp and gave me massages, I enjoyed that part very much. And the cream helped me to loosen the few hairs I still had attached to the skin.

My Shaved Head

And I received one of the very big news in a long time, my little sister was heading to Brisbane to help me (and in the future she became my stem cell donor).

I was very happy on the countdown to see my sister, after two years of being on Australia I was desperate to see her. The day she came into my room was the first day I remember I cried a lot out of happiness and excitement.

My Sister, Rosagabriella and I at the Patients Lounge

A Collage... my first

In the meantime I distracted myself on the crafting group of the Hospital, every Wednesday I was there, sitting on the Patients Lounge waiting to have fun, talk to my fellow neighbors and create something different. I manage to do this beautiful collage on picture. It was done by a beautiful human being a volunteer, I don't remember his name (I will find out and update the post), but he helped us all doing the crafts, he used to carry all (paints, magazines, glue, beads, strings) with him 

and teach us how to create beautiful pieces of art. He used to also handover tea and cookies in the meanwhile. I remember him as an Angel. My crafty Angel.

Morning and Afternoon Tea Menu at the Hospital

On regards of the food and my appetite. I decided to give it a chance to all the food on my weekly Menu, I simply choose to eat different foods every day, and make it as I was taking pills or having medicines in the shape of food. I made a commitment to myself to not lose my appetite and eat all I had on the plate, sometimes it was simply too much and I couldn't clean the plate but I did my best not to lose any weight. As I said on the beginning of the Blog I didn't focus on the side effects of the treatment, and I didn't get almost any nausea or vomiting as a result of the chemotherapy. I remember that when my friends used to visit me they bring me a bag of cookies from a French Patisserie: Le BoinChoix, I used to love them! Yam.

I used to order salads for dinner, always soup if they were available, and I couldn't miss the dessert for anything in the world, every afternoon tea was I little bit naughty with the sweets... I can't stop myself I have a sweet tooth. I enjoyed discovering Australian sweets and desserts, like scones and cream I will always remember that.

On late February commenced the second cycle of chemotherapy, this cycle was stronger and meaner than the previous one, this involved 2 separate lumbar punctures for administration of the intrathecal chemotherapy (the one that goes into the brain), and 4 days of chemotherapy infusing continuously. That's how I got the chemobrain! 

By the end of February I was free to go home with a big bag of medication, a long list of daily visits for more chemotherapy at the RBWH, a double Lumen Hickman's line on my right side of the chest, and a brain that wasn't on its best. I got home to St. Lucia (Brisbane) along with my sister and husband, it took them a great effort to take care of me 24x7 and they did it good, I can't complain, I am so thankful to them.