Stem Cell Transplant – Update 3

Hey Team,

The good news is……..(uncomfortable pause)…….. yesterday (Day 13) I was discharged from hospital!  On Day 11, my WBCs became ‘detectable’ and in just three days, they are now at 2.5. For me, about 8 is normal.  So I have been really fortunate with my experience.  Speaking to the nurses, in the past two years, there have only been two patients that have not required a visit to ICU or some form of intensive antibiotic intervention.  Now it is three!

Over the past few days I have had a few challenges.  Bone pain hit with vengeance and my platelets (which makes blood clot) fell to a level of 10, where it is normally 180. Apparently I was at high risk of bleeding out if I broke skin!! On that day I was confined to bed until I was given a platelet transfusion at noon. It was an interesting ‘control measure’ imposed for my safety. I think about the scenarios that could result in me ‘breaking skin’ when out of bed, but in my hospital room, and came up with the following;

  • whilst walking into my bathroom, trip over and knocked my head on the basin;
  • whilst showering, shower rose becomes unfastened, swinging down and hitting me with such force that I became unstable on my feet, falling over and knocking my head on the basin.
  • whilst brushing my teeth, drop toothpaste on the floor, as I bend down to wipe it up, I knock my head on the basin.
  • whilst sitting down in my room staring longingly out my window at the beautiful view, a bird hits the window giving me such a fright that I jump in surprise, fall backwards over my bed, stumble uncontrollably into the bathroom where a slip on a banana peel and fall over, knocking my head on the basin.
  • whilst ………. (insert your one here and send it to me for a cheap laugh) So needless to say, I complied with the nurses risk assessment and stayed in bed until noon. Safer that way.

So now I am happily at home.  I expect the bone pain will continue for a few days and fatigue will stay with me for the next few months.  The fatigue means that I need to rest for an hour after doing a simple activity like taking a shower.

From here I have a lot to keep me busy including;

  • I have a port (permacath) in my chest that connects to my jugular vein for easy blood access.  That will be surgically removed on Friday.
  • mid September I catch up with the guru Prof Avni Sali where he will offer more advice on diet and wellness.  I will be sure to update you on what he offers.
  • I meet with my kinesiologist Nan Abbott. She works with me to ensure I am walking in the right direction on the right road. She opens my eyes to challenge what I might otherwise miss or ignore (to my own detriment).
  • late September I will have a bone marrow biopsy. This is a measure of cancer. It will allow me to understand how close I am to remission. I say ‘how close to remission’ as the best time to assess this is at ‘Day 90’ post SCT.  So this will be an interim test.
  • I then meet with Australia’s leading Myeloma specialist to discuss the merit of an Allo Stem Cell Transplant (cells from my bro). Should be an interesting discussion.

Busy times. Bring on the carrot, beetroot, celery, apple and ginger juice.  I have missed our morning rendezvous.

As I mentioned in my last update, Sarah and I are very thankful to all of the people who have been there to support us through this challenging time.  You guys rock.

I hope this message finds you well!

Take care

Geoff

Stem Cell Transplant – Update 2

Hello my healing team.

As always, I hope this update finds you well!!

It feels that not a lot has happened over the past week. I have been living Groundhog Day, each day waking up expecting to find myself with tire marks on my chest after having been hit by ‘The Truck’.  I don’t want to celebrate too soon, but I think I may have dodged ‘The Truck’ as I am yet to have any of the nastier symptoms including nausea, diarrhoea, contracted any infections or had general body/bone pain!!  Frikkin awesome!!  I am actually feeling quite well with my only challenges being fatigue and loss of appetite.

The return of stem cells on Day 0 went off without a hitch.  Apparently they preserve my stem cells in a solution that smells like urine after eating asparagus. So for the following few days I stunk like the wee wee asparagus man. Yay. Today is Day 10. On Day 8, I was very pleased to report that I hit zero!!  That is to say that I no longer have any white blood cells (WBC) cruising their way around my body fighting infections. Whilst it may sound a little alarming, it is actually the number that I have been hoping to hit for several days now. It means that the chemo drug Melphalan successfully removed all bone marrow, and has hopefully nailed most of the cancer cells!  From here I expect to stay at zero WBC for several more days while my newly transplanted stem cells embed themselves in my bones and restore my bone marrow (bless their cotton socks).

So for me now, Groundhog Day has me waiting for my ‘numbers’ to pick up. I need my WBC count to go over 1.0 before they will allow me to go home. My biggest concern now is avoiding infections and illnesses while I have no immunity. So for all of you out there that who had cleared their calendars and were planning to visit me, please make sure you have no lurgies!

Over the past 12 days, Sarah has been working to keep the kids in their routine and happy, and she has driven to Melbourne every day to keep me occupied. She really is awesome.  A lot of people are providing much needed support to Sarah and I by visiting, calling, providing cooked meals, babysitting etc. Both Sarah and I are very thankful for all you have given. Thank you.

To update you on our fundraising for the Leukaemia Foundation, we are close to raising $25k (not all is shown on the LF website http://my.leukaemiafoundation.org.au/geoffnyssen ). Thank you so much for your generous donations and support.  We are still collecting donations, we had a raffle for diamond earrings that were donated (won by Kristy Lewis) and we are now holding a raffle for a Jimmy Choo clutch worth over $1,000 that was also generously donated. Tickets $50 – please contact me for more details.

I have attached a few photos.  I particularly like the picture drawn in my room by my daughter Georgia.  Also, there is o photo of me getting my stem cells back (red liquid in drip).

Until my next update,

Take care

Geoff

image 3image 2image 4

Stem Cell Transplant – Update 1

Hello to my healing team (if you are reading this and sending positive thoughts to me……..then that is you).

I hope this update finds you well.

Although i have been in touch often regarding our fundraising activities, i thought i would give you an update on how i am progressing.    Apologies for the ‘Bryce Courtney / Tolkien’ nature of this update.

On Tuesday, I was admitted with a bald head into St Vincent’s Public Hospital to commence my Stem Cell Transplant (SCT). Whilst I go into this procedure confident that it will help me achieve Complete Remission, I also have to be honest that it does concern me how all of the drugs administered will negatively effect me and my wellbeing. Being a little more honest, I often feel bloody annoyed and sad that my family and I have to go through all of this at this point in our lives. I know i am not alone in those thoughts. They are shared by those who care about me / us, and they are shared by others who have loved ones touched by serious health and life challenges.

I am, however, completely overwhelmed and thankful for the kind and generous support shown to my family and I from all of those around us. I have been amazed by the generous donations of money, donated items for raffle and for the time you have spent getting in touch with us to share your stories, sending messages of support and inspiration, popping in for a coffee, helping us with the kids or just being there to instigate a laugh.  With my SCT now underway, please keep it coming as our the next few weeks will be a challenge…… not to mention a bit boring whilst in hospital. Please also know that visitors are more than welcome unless you are unwell.

So the injection and ingestion of drugs started yesterday (Tuesday). This is considered day minus 1. It started with two litres of saline, followed by a litre of the chemo drug Melphalan, then another couple of litres of salty water. This has been complemented by another 20ish injections that are meant to assist with nausea, diarrhoea, water retention, fatigue, blood thinning, virus immunity enhancers, bacteria immunity enhancers, steroids, pain management and general antibiotics (to stop any other critters from getting me while immunosuppressed) to name a few. The plan now is to return my stem cells today (well 2.5M of them). This is day zero. In addition I will get many of the supporting drugs noted above as well as some phenergan to slow me down if needed, some additional nausea meds and more steroids to supercharge the effectiveness of all drugs administered. I do wonder what will be the cause of my death when I go (at the age of 80…….or possibly now 78 :o).

As a chemo drug, the Melphalan has a short ‘active period’ (half life of one hour).  In that time, it has targeted all fast growing cells in my body including those in the mouth and digestive tract, hair, bone marrow, stem cells and importantly the cancer.      As suggested, I get my stem cells back today – day 0.  It is expected that by day 4, my bore marrow will be gone and by day 7, my white blood cells and platelets will be depleted to nearly nil. Until day 7, I expect to be quite mobile and out, but after this time I will be restricted to the hospital…….and will begin to feel quite rubbish. This will be the rough time and will last until approx. day 14 at which time my marrow and WBCs should have re-established enough to provide minimum levels of immunity, which will have me feeling better.  It is between day 14 and day 20 that I should be well enough to return home. I understand that fatigue and nausea will continue to be my buddy from then for the next 3-6 weeks.

So I have been thinking a little about what this gig is all about.  And whilst there is no one easily articulated answer, I think that part of the answer sits in the following – We are here to create and nurture some form of positive growth, something that when we leave (or whilst we are still here) can become bigger and better than what we were or what we did. This can include many things not limited to;

  • our kids and families
  • other relationships we hold or people we can influence
  • the homes we build
  • the environment we live in
  • the infrastructure we build and support and
  • the systems and processes that we create and interact with to hold them all together.

All of these items are areas that I can positively influence and support their growth. I see my current health situation as another topic that I will have personal experience and knowledge on that I can impart to others to support, nurture and enable.

I have attached a couple of photos showing me on day -1 with my head (entirely bald excl eyebrows), the view from my ‘hotel’ room, my morning injection proposition and me getting the Melphalan (significant as it is my closest step to CR). I have also added some photos of my supportive bald siblings and dad.

To update you on our fundraising for the Leukaemia Foundation, we are close to raising $20k (not all is shown on the LF website http://my.leukaemiafoundation.org.au/geoffnyssen ). Thank you so much for your generous donations and support.  We are still collecting donations, we had a raffle for diamond earrings that were donated (won by Kristy Lewis) and we are now holding a raffle for a Jimmy Choo clutch worth over $1,000 that was also generously donated. Tickets $50 – please contact me for more details.

Please note that I have been a little more descriptive in this update as to how things are going. Some of the things I am going through are not nice, in turn, some of the upcoming updates may not all be entirely nice. I understand if you would prefer not to receive these updates. Please let me know if this is the case.

Big hugs to you all.

Thanks

Geoff

image 1 image 2 image 3 image 4 image 5 image 6

The head shaving extravaganza

Guys,

Firstly, thank you to everyone who has donated so far. Your generosity is hugely appreciated. We have currently raised just over $7,100 (plus an additional $4000 through a separate raffle) which has us well on our way to our new target of $15,000. A random fact (that may not be entirely based on fact) …………. I calculate that it will take 3 minutes and 22 seconds to shave my head assuming the clippers are sharp.

I have another pretty cool update to ‘Our’ Greatest Shave fundraising for the Leukaemia Foundation.  The Victorian Gifts Trade Fair is currently taking place at the Melbourne Convention and Exhibition Centre (Jeffs Shed). The organisers have kindly agreed that two of my siblings and I have our head shaved at the entrance to the Fair to help us raise awareness of Blood Cancers, and to assist us to raise more funds through donations. This will be staged at Jeffs Shed on Wednesday 6 August at 12:00pm.  Please feel free to come along and see me lose the beloved hair from off my head.

Also, for those still keen to donate, please follow this link.

http://my.leukaemiafoundation.org.au/geoffnyssen

Thanks again for generously supporting our cause.

Have a good weekend.

Thanks

Geoff

Love for a quote

Hello my healing team,

I hope this update finds you happy and well.

I am progressing well through my treatment.  Chemo……tick, radiation therapy………tick, stem cell (SC) harvesting………tick.  The SC harvesting went really well.  I spent a gruelling week in hospital. However, I did manage to catch up with a lot of people, get out for dinner a few times in Fitzroy and Collingwood, I got to a few footy matches (go tiggies) and managed to pop into the cinema to catch a flick. Gruelling. Regardless it was productive.  Dr Ali needed to extract five million of my precious SCs which is enough for two transplants, but given I am fit and healthy, I managed to give up nine million. Anyone need any…………..just text me.

I am now fast approaching what feels like the serious part of my treatment.  I am booked in to undergo a SC transplant on 11 August. As noted previously, they give me high dose chemo which will effectively remove all cancer, my bone marrow and white blood cells (my immunity). They will then reintroduce my own SCs which will re-establish my bone marrow and white blood cells minus the cancer. The aim of this remains Complete Remission (capitals intended)!!

It feels to me that the shock of being diagnosed with cancer has subsided.  I have spent a lot of time talking to my close family and friends of our new predicament and the challenges that we face, and I feel that we understand better what our journey is going to entail (both the good bits and bad).  Importantly, regardless of the medical uncertainty and statistics, I remain steadfast in having a positive outlook and retaining the belief that I will live a long time with (or even possibly cured from) cancer.

A well known symptom of my SC transplant will be the loss of my hair. To prepare myself for this I thought I would get ahead of the game and shave my head.  I thought it could be a good opportunity to raise money for the Leukaemia Foundation.  On telling my brothers (of which I have six) of my intent, as a show of support, they all decided to join in and make it a mass shaving!!  Not wanting to be left out, my two sisters are also keen to have a serious hair cut for charity. So this is the bit where I lean on your generosity to support us in ‘OUR’ GREATEST SHAVE. I have set up a fund raising page with the Leukaemia Foundation. Thanks in advance for your generosity and support.

http://my.leukaemiafoundation.org.au/geoffnyssen

I have been reading a lot recently on the topic of wellness and self improvement and have come across several quotes that have resonated with me. I like them because they are simple;

  • Instead of multitasking, do one thing at a time and do it well.
  • Be present.
  • Life isn’t waiting for the storm to pass, it is learning to dance in the rain!!
  • When eating food, eat not too much and mostly plants.
  • The commonality that unites most popular or ‘fad’ diets is that they recommend mostly unprocessed plant foods with or without lean meat, poultry or seafood and which is low in refined starches, added sugars and highly processed foods.
  • When considering traditional Vs alternative treatment approaches, implement them both. Just know what treatment you are undertaking and why!!

I’ll be in touch soon to provide an update as I progress towards having a cold shaved shiny head.

Take care

Geoff