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Monday 30 December 2013

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.

allogeneic bone marrow transplant leukaemia ALL australia positive story
Myself the very first day hospitalised 

allogeneic bone marrow transplant leukaemia ALL australia positive story
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.

1 comment:

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I am reciting every day

All is Good in my Life

I am beautiful

I am open to new and exciting experiences the Universe offers me