Category: Onwards and Upwards

Onwards and Upwards No. 28

Hello my healing team,

I hope this update finds you well!!

Today I received my latest bone marrow biopsy results from the test I had in mid January.  This test tells me the percent cancer cells in my bone marrow. Ever since I relapsed, the cancer number has been steadily growing.  Eight months ago, my result was 1.6%, then 3.8% only four months ago.  Given it has been effectively doubling every 3-4 months, I was expecting a result of 7-8%.  As suggested in my previous update, with the numbers increasing, I move closer to a time where I have to make hard decisions relating to my treatment and wellbeing going forward.

My result is 4.2%.  This represents a significant slow down from where I expected my numbers to be.  Yee har!!  This means that ‘decision day’ has been delayed. It means that I can continue to live a relatively normal life.  It may even mean that my body (and my immune system) is learning how to deal with the cancer………but I don’t want to jump to any rash conclusions too quickly.  It means I can stop, take a deep breath, hug my family, and enjoy my time.  I LOVE TIME!!

The way I believe that I am going to beat this cancer is by living deliberately.  By not settling for comfortable mediocrity.  I need to continue to look towards improving myself, with a clear focus on improving my immunity and my body’s ability to heal itself and fight the cancer.  My good friend Enzo reminded me of all the things that I do to continually inspire myself to strive for improvement.  I have summarised them;

• I read information from new and varied sources.  I don’t believe everything that I read, however if the author describes an idea that has merit,  I give it a try to assess whether it suits me.  If it does, I implement change.
• I watch programs or inspiring footage of people doing amazing things, whether that be something as simple as a kid conquering his fears, or a person learning to walk again after being significantly injured.  I know that the ability to do amazing things comes from hard work.  They inspire me to work hard and persist.
• I love watching informative clips.  Programs like TED talks where people thrive in adversity inspire me to be better.
• I talk with those around me.  We share ideas, and whilst I don’t believe or agree with everything that I hear, I ponder it and consider how different ideas can help me to be better.

Although my result today is positive, the numbers are still increasing.  I cannot sit still and rest on my laurels in a state of comfortable mediocrity. I have to seek the life changes and implement routines that will have me here until I am 80.

Finally, thanks for all of your kind messages, all of your fingers that were crossed and your gestures of support.  It is why you are in my healing team.

Take care

Geoff.

Onwards and Upwards No. 27

Hello my healing team,

I hope this update finds you well.

Although it has been relatively quiet, I have a few things to report on the health front.  Sarah and I recently took the opportunity to seek a second opinion from the (arguably) second most recognised Myeloma haematologists here in Melbourne.  Whilst I was a little hesitant to step outside of the shadow of my current haematologist, (the Nutty Professor) who happens to be the most recognised Myeloma haematologists here in Melbourne, on Sarah’s insistence we did. As a result, some of the decisions that we soon have to make relating to our path forward are a little clearer.  As you may recall, my shitty cancer has resurfaced and is growing.  At some stage soon, it is likely that I will need to commence a three month program of chemotherapy in an attempt to reduce the cancer.  Assuming this is successful, I will then reach a crossroad where I need to make a decision, a decision that is now more clear given our recent ‘second opinion’.  Our decision or choice is this…Likely longer lifespan with compromised quality of life OR Likely shorter lifespan with improved quality of life.

The associated options are;

• Option 1 – longer life span: Immediately following chemotherapy treatment, submit for another stem cell transplant where the stem cells from one of my brothers is transplanted into me.  Effectively an immune system transplant.  I understand that this option is my best chance of having a sustained longer term remission. However, it does have its risks with the most likely being reduced quality of life associated with Graft Vs Host disease, where the introduced immune system can attack my body.  This impacts everyone differently and can range from very minor side effects such as persistent nausea and diarrhoea, through to more significant side effects such as major organ damage or impairment and even death.  The upside, statistics suggest I will live longer with this option.
• Option 2 – improved quality of life: Following chemotherapy treatment, we shelve the stem cell transplant and commence a long term low dose chemotherapy program.  Whilst this has side effects, they are typically quite manageable (hence the improved quality of life).  However, stats suggest that the cancer will find a way to conquer the chemotherapy, and re-emerge more resilient to secondary chemo drugs.  With this option, whilst I can jump into the next stem cell transplant at any time, the longer I put it off and the more resilient the cancer becomes and the less effective the stem cell transplant is likely to be.
• Option 3 – Something in between.

The real kicker is that whilst I feel more comfortable that I understand my options, the actual outcome of any treatment is unknown as everyone responds differently.  Hmmmph!!  So for now we sit and wait.  I recently had another bone marrow biopsy, where they take bone and bone marrow from my pelvis and test for cancer prevalence.  I get the results back next week.  If the numbers are favourable, then I don’t need to make any decisions for a few months yet.  If they are significantly increased, then it may be decision time.  Fingers crossed hey.

In my recent updates, I have spoken about bucket lists and goal setting.  Why??  I share my thoughts on this because I hope to inspire people to live deliberately.  I want to inspire you, the people I care about, to be purposeful about what you do, what you achieve, and ultimately, the legacy that you will create and leave behind.  I know it sounds cliché, but we can all make a difference. We can make a difference in our lives and in the lives of others. We do this by setting goals to be the best we can be and by establishing a bucket list so that we can have as much fun whilst we navigate our current lives.  I have spent a lot of my life living in a place where I have been happy to accept comfortable mediocrity.  I didn’t plan to achieve, I simply walked the path as it emerged.  I was quite happy living in that manner.  However, I have found that with only minor changes / planning, I can be more deliberate about the way I live.  I can impact on more people, the people I care about. You.

Take care

Geoff.

Onwards and Upwards No. 26

Hello my healing team,

I hope this update finds you well.

I hope you had a very merry Christmas and enjoyed your New Years festivities.   I have had a blast camping on the Rosebud (Victoria) foreshore and beach with Sarah and the kids, several of my brothers, sisters (inlaw) and my beautiful nieces. It is made extra special as I grew up here, living opposite the beach between the ages of 4 to 7.  I recall the long summers where I would follow my older brothers around like a bad smell (rather like a little kid following his idols) as they got up to all kinds of mischief. As I watched their mischief, I watched and I learned.

It was here, with my brothers, that I first rode a bike then slowly improved by going over jumps, doing mono’s and riding with no hands.  I learnt how to swim, first in the pool, then at the beach. At the beach, I had to be able to swim out to the boating ‘nav poles’ (roughly 400m) if I was to be good enough to keep up with my brothers. With practice, I did. Another challenge was to pick up animals with out getting bitten. I learnt how to catch crabs and blue tongue lizards with my bare hands. But I still cannot bring myself to pick up a huntsman spider with bare hands. I have to use a towel to pick up those little buggers. I’ll happily leave that one to my brothers.

As I reminisce, I see that I was always learning. Back then, my learning came every time I hung out with my brothers. Now, I find that I have to seek out the opportunity to learn. I have to work hard to be as inquisitive as I was when I was a 6 year old, because if I am not inquisitive, the learning opportunity will pass right by me without me even recognising it. It is so easy to miss the opportunity. So what do I do to learn?  I sit back and observe. I ask questions. I read. I try to be inquisitive. I want to learn so I can continue along a path of self improvement, and so that I can continue to be challenged.

What do you do to remain inquisitive and to keep learning?  Whatever it is, take it into hyperdrive and enjoy.  All the best for 2016!

Take care

Geoff

Onwards and Upwards No. 25

Hello my healing team,

I hope this update finds you well.

For me, everything has been pretty quiet on the health front. It has been really nice to share time with my friends and family where I am not ridiculously inundated with Dr’s appointments or treatments. The truth is, I am feeling quite well and am looking forward to a normal Christmas with Sarah and the kids!  Yay for us! Given I have no juicy news, I thought I should pick up on where my last update left off and (hopefully) inspire some serious thought about bucket lists.

As I suggested in my last update, a bucket list isn’t the list that is compiled when contemplating death. Rather it is the list that you compile to inspire living!  It is a list of your biggest wants and dreams. Importantly, it is a list to be implemented within a defined timeframe. For me that timeframe is 5 years. When I complete everything on my current bucket list, then I will generate another!

To some, key to a meaningful bucket list is about living big. To others it is living a fulfilling existence.  Being connected with friends and family was key to my bucket list. Recently, I have read many articles about longevity of life. They all acknowledge the importance of healthy life choices including diet.  However, many conclude that being socially connected was the biggest contributor to long life. I read that a study completed at the University of California found that “those with close social ties and unhealthful lifestyles actually lived longer than those with poor social ties but more health-promoting habits. Of course, those who lived healthfully and had strong social ties lived the longest.”  So I consider this as I compiled my bucket list for the next 5 years. Here are a few of my ‘Must Do’ items:

• Like most, I want to travel more. Importantly, my travel isn’t only about seeing fab places, it is more about who I am doing it with. For me, the Pacific Islands, Bali, England, Netherlands, and many destinations in Australia all have one thing in common.  I intend to travel to these locations to connect with friends who are currently there, going to be there, or joining me on the journey there. There really is nothing better than sharing the best travel experiences with those you love.
• Every time I send out an update or deliver a presentation, I receive supportive comments and feedback.  I give you a snapshot into my life, and I often receive the same back from you.  It is an exchange that I get a lot of energy from. I want to expand this exchange and share stories as far and wide as I can.  So for my bucket list, I want to continue my updates and increase my readership. 1000 Facebook likes on a single post would be amazing. I want deliver a presentation to an audience of over 1000 people. Delivering a TED talk would be a dream. I want to publish a book. Someone buying a copy would be an honour!!
• I aspire to be a good dad. Over the next 5 years I want to be routinely present where I can walk my kids to and / or from school at least 600 times and I want to participate in school based activities at least 60 times whether that be helping in the class or on excursion, or just doing canteen duty. I feel fortunate being able to participate in these simple tasks. Not many dads get to do it. It is rewarding as I engage with my kids in their environment.  I also aspire to be a good husband. I am in discussion with Sarah over how achievable that is :).
• I want to give back to institutions that have supported me. I want to raise $100k for one or more charities. I want to help 1500 people to donate blood and I want to be responsible for one person being matched as a stem cell donor. These things save lives.
• I want spontaneity, fun and excitement. I want that for me and those with me.  My brother Jerome recently had his bucks party in Queenstown, NZ. Ten guys did bungy jumping, a canyon swing, jet boating and luge.  We acted like irresponsible and immature idiots and laughed the whole time whilst doing it.  With these items now crossed off the list, I want more.  Others include sky diving, diving with whale sharks and manta rays, dancing with Ellen on the Ellen de Generous show, playing basketball with an NBA basketball player (current or not).

So there you have it. I choose life and living. What do you choose.  What’s at the top of your bucket list.  I would love to hear your ideas.

Take care

Geoff

Onwards and Upwards No. 24

Hello my healing team,

I hope this update finds you well.

It’s been a while so I thought I would update you on my recent results.  A couple of weeks ago I had another Bone Marrow Biopsy and my results indicate that the cancer is progressing.  It has gone from 1.5 to 3.5% in my bone marrow in my pelvis.  Whilst I would much prefer to see it going down, the fact that it is progressing slowly is a bit of a win.  What’s even better is that I feel healthy and well.  Sure I have fatigue to manage, but I don’t have many aches and pains!!   Also, given the slow progression, I don’t have to go back onto the hard core chemotherapy for a while.  This will be reassessed after Christmas following my next bone marrow biopsy.  Bring on a (relatively) drug free Christmas and let’s hope the cancer numbers stay stable.

Whilst I have been busy with home life and work, I have made time for a few other things that I am passionate about.  I have continued to support several charities (Australian Bone Marrow Donation Registry, Lymphoma Australia and Myeloma Australia) by either fundraising, raising awareness or by providing support. This has been very fulfilling.  I have also taken the opportunity to speak about my recent experiences and learnings by delivering several presentations.  I have spoken of how to become empowered in times of adversity, the value of giving back to charities, and the importance of acting now to live deliberately by setting and striving towards your goals.   I have shared my experiences in the hope that others hear my messages and become inspired to implement change towards an improved life.

When living with a terminal disease, time becomes important. Whilst I believe I will live until I am 80, I have decided that I will live as though I only have 5 years left.  It has been suggested to me that nobody knows when we will die, and that any of us can go at any time. On this basis, we should all live as though we only have 5 years left.  So what have I done??  I have written out a bucket list for the next 5 years. I want to make the next 5 years fruitful.  Then in five years time, when I have completed my current bucket list, I will write another bucket list and achieve more. I encourage you to do the same.

Time is of the essence. My fab kineasiologist, Nanette Abbott, recently introduced me to this quote taken from a book by Lisa Messenger; If you want to know the value of one year, ask a student who failed a course; If you want to know the value of one month, ask a mother who gave birth to a premature baby; If you want to know the value of one hour, ask the lovers waiting to meet; If you want to know the value of one minute, ask the person who just missed the bus; If you want to know the value of one second, ask the person who escaped a car accident; If you want to know the value of one-hundredth of a second, ask the athlete who won a silver medal at the Olympics; and then it was added If you want to know what an hour is worth, just ask a wife who can’t make it to a car crash in time to say goodbye to her husband.

I feel fortunate that I have time to create and fulfil my bucket list. Act now.

Take care

Geoff