How to prepare for a stem cell transplant

Almost a month has gone by since Sarah left to visit our home in Arrowtown.

I had great hope of joining her, but that is not the way to prepare for a stem cell transplant. 

I asked the medics for approval to fly to NZ, but the answer was not what I wanted to hear. Instead of leaving Sydney for a couple of weeks, I was strongly advised to take care and to do much less; even to self-isolate if I could manage it. I was to avoid restaurants, theatre, crowds, public transport. No more socialising. 

I spent 6 hours in the hospital undergoing pre therapy assessment. This included a gated heart pool scan to test if my heart is strong enough for the treatment ahead. So far so good. However, my blood levels indicate that whilst paraproteins have reduced to 3g/l (the cancer is still present) I am highly susceptible to infection. If I catch Covid or even something simple like the common cold, all treatment could be delayed. 

For once, I have had to be sensible.

For the last week, I have hidden myself away in the apartment (most of the time) , going out only when I needed (off peak)  but still doing things I can enjoy.

I’ve had some fun walks. Im trying t keep up 10,000 steps a day despite the rain.

Early morning in Sydney Harbour.

Exploring bits of the Botanical gardens at a slow pace (away from people and crowds) and when no one else is around. 

When you slow down, you tend to notice a lot more detail; for example some plants are hairy:

Sculptures hidden and part of the bush

There is a writers walk/trail at Circular Quay (only visible when the crowds have gone)

Finding the Tom Aren walk in Balmain

Almost having the beach all to myself

Early jaunts to the Sydney Fish market over the Anzac bridge

At home, I have been doing daily yoga online; reading via audiobooks and podcasts; cooking interesting food (I enjoy selecting a recipe, then shopping for ingredients online) 

I’ve had help from our garden designer friend Annie Mason to source pots and plants for the balcony. 

Sarah has called me several times each day to keep me cheerful.

I am trying to stay safe and sane.

How do you prepare yourself for what you know is going to be horrible?

Next week is a big week in my life. Ive added some photos to try to cheer up the next bit...

On Saturday , Erik from the Gloss salon in Crows Nest, will shave my head.  Liberating in some ways; confronting and a shock for others. I have a few cotton wraps to hide my head from the sun (when it actually decides to stop raining in Sydney) and a possum beanie for when its cooler. I will lose all my hair anyway. By going early, I have more control and there is less mess when all remaining hair on my body will fall off.  I hope I keep my eyelashes.

I will be admitted into hospital on Tuesday 18th October for approximately 3 weeks.

Treatment starts immediately (D-2) with a triple lumen catheter inserted into just under my collar bone. The other end is in a large vein just outside my heart. I expect surgery, stitches, drugs and pain. I don’t want to see or feel this and I am dreading the op. Last time the medics in Christchurch tried to insert something similar (PICC line) it went badly wrong. I ended up with blood clots in my neck and an arm swollen to twice its size.  Three lines will dangle outside my body for all of my time in hospital. I am not allowed to raise my arms above my head, stretch or cough. I have to wear button up shirts that can be opened easily. 

Next day (D-1) is the autologous conditioning high dose melphalan (HDM). This is the drug that kills everything; good (normal cells in bone marrow) and bad (cancer cells). This wipes out all immunity (I will need to get re vaccinated for everything – COVID included)

Finally the stem cell transplant. 

Shipped frozen from Christchurch, I will be re united with my 52 year old self; stem cells harvested from me in August in 2017.  20 October 2022 is my new Day 0. This is the myeloma equivalent of being reborn again. All treatment and remission time is now counted from this day.

Meanwhile lots of other drugs are administered to try to counter side effects and we have to wait for the HDM and the stem cells to work their poison/magic. I will be at risk. Side effects of HDM therapy include: hematologic toxicity (Anaemia, Neutropenia) , infection (Pneumonia, septic shock, sepsis), gastrointestinal complaints (nausea, vomiting diarrhoea), pulmonary disease, acute renal failure, and cardiac arrhythmias. Who knows which of these I will get, but I am sure to get one or more in the days ahead. I expect a stint in intensive care. 

I have no idea how I will cope with all this. I must admit that I am a bit scared. 

However, I’ve done it before and survived; I can do it again. 

This is the second and the last time. I will not be able to put my body through this again.

Sarah will be back in Sydney in time to escort me to hospital but after that she is only allowed to visit for one hour per day. Sadly, I am not allowed any other visitors. 

I won’t be able to do any yoga or any exercise outside until the line comes out. I will be confined to hospital for the entire 3 weeks until my body and blood recovers and I am strong enough to leave. 

We will have to take precautions after that. 

I will have to continue to wear a mask in public due to risk of infection and keep clear of anyone with colds/coughs etc. I expect gentle walks, loads more tests and a slow recovery. 

After 60 days, I get COVID vaccinations and a further 2 cycles of DVd chemo. (6 more weeks of feeling shit and painful jabs in the stomach) 

All being well, at the beginning of February 2023, I will be allowed to fly back to NZ.

There is light at the end of the tunnel.

Meanwhile, I have time to enjoy the Spring and Summer flowers..