Remission, Wigs & a Bit of Home Time - 17.4. 26

Back with my home girl and a new do… because no-one wants to see chemo poles 24/7. Iggy was more interested in the birds in the bush than taking a selfie which is fair.

IMPORTANT: Please consider registering as a stem cell donor - if you are between 18-35 by doing a simple swab test or registering when donating blood, you could save MY LIFE or someone else’s. It’s a simple process and procedure to donate if you end up being a match, and very similar to giving blood.

Dear loyal readers (IYKYK),

Just another little update on treatment. It honestly feels like a blur, but I will do my best and again I hope this doesn’t seem too self-indulgent or lame to post!

Going Home
On day 32 of my hospital stay, I was finally allowed to go home for a few days. It was both amazing and a bit scary. After being in hospital for so long with constant monitoring, it had become my “safe place,” so leaving it with almost no immune system felt daunting but the nurses and doctors forced me out - and thank god they did.

Being home with my family and my dog, walking along the beach, sleeping in my own childhood bed (soooo much sleep) - it all helped me feel a bit normal again. For a little while, I was not a full-time cancer patient and Dad has been amazing trying to keep me positive at home - he’s a bloody trooper, as well as the neighbours who cooked some amazing soup up for me.

Sunset in the backyard at home… the little things.

My brother on a coffee date with an unknown brunette

Home with the beloved hounds

A rare moment of Victorian sunshine was bliss

Blood Counts & Biopsy Results - THE FIRST HURDLE
After induction chemo, which basically wipes out your blood and bone marrow, my blood counts were slow to recover at first… I was obvs a bit anxious. But by day 34, they started rising again (go body) and eventually reached levels doctors were really happy with. Some even back to normal person levels (as of yesterday) which was exciting to hear - BRB going to harvest my platelets and make some $$$$.

I also got the results of my bone marrow biopsy yesteday, After a very anxious wait and almost no sleep the night before, I found out that the induction chemo has worked in doing what it should have and I have reached what is called clinical or complete remission post induction (don’t get too excited it’s still a long road ahead). But the first hurdle is done - let’s keep it going that way!

This essentially means the leukemia has been reduced to a very low level which they classify as remission as you can’t see it under a ‘normal’ microscope. Low enough to move on to the next stage of treatment - aka. consolidation chemotherapy.

So my blood counts are no longer up sh*t creek, my bone marrow has started to function properly again now that some of those bad L word cells have been killed off..

What Happens Next - Consolidation Therapy + Hiding Cells
There are still some tiny amounts of cancer cells left in my body, called MRD (measurable residual disease). This is completely normal after the first round of chemo. You cannot see these cells without very sensitive testing, which thankfully we have now. The medical world really is bloody amazing.

The good news is my MRD level is very low, only 0.08 percent, which is about 178 cells among millions. Doctors are really happy with this! Hoepfully it becomes non-existent “MRD negative”.

In the past, I would have been considered somewhat cured at this stage, but we now know this disease (thanks to all the research) can come back, so doctors aim to clear out every last cell to aim for a long-term cure.

The easiest way to think about it is like a garden. The leukemia is weeds, and the chemo is like weed killer. The first round gets rid of most of the weeds in the bone marrow/blood, but some can still hide deep in the roots. So you need more treatment (fertiliser) to fully clear them out.

The next step is a few more rounds of chemo to try and get rid of those last remaining cells and hopefully reach MRD negative, meaning = no detectable cancer left.

Think of Acute Myeloid Leukemia as a bone marrow /blood garden overun with weeds (Leukemic cells) and the chemo (fertilizer) tries to kill most of them during the induction phase.

Treatment Plan Ahead
I am currently booked in for two rounds of consolidation therapy over the next two months, with some hospital stays along the way.

I pretty much (best case scenario) come into hospital for four days whilst getting chemo, go home for a few days, then come back in for monitoring for 1-2 weeks whilst my blood counts dip and then hopefully recover. WATCH this space.

At the same time, doctors in Melbourne will keep monitoring my progress and decide whether I will need a stem cell transplant, or if chemo alone is enough for long term remission or a cure.

Stem Cells & Donors
Because of my specific type of leukemia has a gene called IDH2 (r172) present, a stem cell transplant might give me the best chance at a long-term cure if the gene still appears in my ongoing MRD results (based on prior lerning from cases before me). That decision, however, will depend on how things progress with MRD and chemo - this sh*t ain’t simple!

If there is one thing I can ask, please consider registering as a stem cell donor if you are between 18 and 35. It is incredibly easy, just a cheek swab or register through your next blood donation, and the donation process is much simpler than people think. Very similar to giving blood - and NOT some gnarly bone marrow drilling exercise. People are back at the gym after donating the next day!

You could genuinely save my life or another!

Wigs, Wigs, Wigs

Also, I met a lovely lady at the Andrew Love Cancer Centre who let me borrow/road test some wigs. I wanted to see if I didn’t completely hate them before purchasing some of my own, so it’s been a bit of fun.

Cate Blanchett’s character from The Lord of the Rings (if she wore surf hats and was called Karen)

Giving Mandy Moore in her innocent era circa 2007 (less musical talent)

This one is for the future Moroccan holiday I’m manifesting

Thank You
Thank you again so much for all the love, support, meals, gifts, and messages. It means more than I can explain.

I still feel a bit strange sharing all of this, but I am really touched that people care enough to follow along.

Lots of love,
Taz xxxxx