Category: Stem Cell Transplant No. 3

Post Stem Cell Transplant No. 3

Hello my healing team,

I hope this update finds you well.  

Picture yourself in this scenario. You set off on a big audacious journey. It has great challenges along the way, but you embark on your way because you firmly believe that this journey will lead you to a highly desirable place.  A place that makes you happy.  The path you walk has many obstacles which slow your progress. It is slippery so you fall along the way.  Sometimes it gets dark and cold which makes you feel uncomfortable. Much of it is up hill.  However, you march on feeling motivated and a little excited of what it will be like when you reach your dreamy destination!!  If you look into the distance ahead of you, you think you can see your happy place up on the horizon.  It looks beautiful. Your journey takes a long time. Many years in fact. You are tired, bruised and have a few travel scars but you continue on!!  The destination drives you.  

As you walk, you realise that happy place on the horizon isn’t actually getting closer.  You feel confused.  That confusion leads you to be more observant of your immediate surroundings.  You look around only to realise that you are not on a path at all.  You are actually walking on a treadmill, whereby you haven’t progressed, but are still in the same place as where you started from.  Is your destination a mirage’??  Who knows.

Now you know how I feel.  

Yesterday I received my latest results.  I felt excited when my Dr, the Nutty Professor, told me that I have 95% Dan’s immune system and only 5% left of mine.  Under this scenario, my new immune system has the best chance of fighting the cancer.  Winning!!!  Next he told me that my cancer has gone up.  It is now sitting at 4.5%, up from 1.5%. F&ck, F&ck, F&ck!!   It is seriously back.

I set off on this journey just over two years ago and I feel as though I am on a treadmill walking through challenging circumstances towards a dreamy destination that is no closer.      Sure there has been happy times, positivity and optimism along the way. But I am not where I want to be.

It’s a pretty crappy situation simply because, with current modern medicine, we have a limited number of goes at knocking this cancer into long term remission. It is only with long term remission that I will make the age of 80.  Despite having a couple of attempts, I have never achieved such a remission, or any real holiday from the cancer.  This scares me.

One consolation I can take from my journey is that lining every path I walk, I know that I have amazingly dedicated supporters cheering and supporting me.  It certainly helps me continue to walk the path knowing that if I get tired or slip, that you will be there to pick me up.  Thank you.  

Take care.

Geoff

Post Stem Cell Transplant No. 3 – Update 6

Hello my healing team,

I hope this update finds you well.

Straight up, I am feeling frustrated. Held back. Limited. Quarantined. Damaged. Sore. I often feel as though I can’t take a win and it takes its toll on me.

I started the month feeling good. Everything was under control and generally heading in the right direction.  I was set to take a trip with my bro to China.  I was content in my space.

Frustration 1 – I had a meeting with the Nutty Professor last week to get some results.  Dan’s cells are coming up slowly, rising from 72 to 75%. Ok. Good.  The cancer is creeping back, increasing from 0.6 to 0.9%.  Crap.  It’s a mixed report that delivers mixed feelings. I just cannot have this Stem Cell Transplant not work.  It not working means that I am two strikes down!!  Not only does that suck……it is a little scary too!!  We have to banish the cancer!!

Frustration 2 – At Easter, I strained my foot, aggravating a past injury. After hobbling around for a few months waiting for it to settle down, X-rays show I have broken a bone in my foot and now have suck up the pain and inconvenience to wear a moon boot for the next month. Arrgghhh.  Surgery will need to follow at some point but I need to wait for my Myeloma to sort itself out first. I can’t afford to divert my healing from my cancer.

Frustration 1 + 2 = 3 – i can’t go to China,  I cant run or ride, I hobble when I walk, I am often in pain, my cancer is coming back, my SCT hasn’t worked yet to combat the cancer, the cancer stops me from living a normal life in that I haven’t worked for a long time, I often cannot do and miss out on things I want to do and I sometimes struggle with motivation doing enough purposeful things to keep the demons in my head quiet.

AARRRGGGHHHHHHH

It all just gives me the shits………. oh and the side effects that I do have from the stem cell transplant effects my digestive tract so I literally have the shits!!  AAARRRGGHHH.  It is so frikkin frustrating.

So.  What to do?????

Gratitude – I am grateful to be alive. I have an amazing family. My friends are there for me.  I reflect and smile because of the great aspects of my life.

Purpose – I go to the pillars of happiness tool. I look at where I am now, identify things I can work towards that will make me (and my family) happy and I start walking in that direction.

F$&k you cancer – in spite of my cancer setbacks and my broken foot, I start (re) planning a trip to China.

Onwards and Upwards.

Take care

Geoff

Post Stem Cell Transplant No. 3 – Update 5

Hello my healing team,

It’s been a while my friends.  I have missed you!!  I hope this update finds you well.

You may remember from my last update that I find myself in a state of cancer limbo.  In January, I wrote how my Allo Stem Cell Transplant was incomplete with my immune system remaining as 45% mine, and 55% my brother Dan’s.  The challenge with this is that with these percentages, my immune system won’t fight cancer.  This is a real concern because the cancer is now coming back.  It was 0.1% and has recently increased to 0.6%.  Not a big increase, but it’s going in the wrong direction and scary all the same. This was further compounded by the news that the percentage of Dan’s cells started slipping. It went to 50% 😳.

What sucks about my cancer is that I rarely get good news about it.  My experience is that I go through gruelling treatment, I get a short period of good news that my cancer has been kicked, then it’s all tough news from there as I watch the cancer re-establish itself, growing like mould in a shower that never gets cleaned, or rather, cannot be cleaned. Mentally, it’s a tough gig. To manage, I look to the little wins for some reprieve. RecentIy, I have had a little win.

It seems that Dan’s cells have turned around and are now at 70%.  Wooo hooo!!  I sit here with my fingers crossed hoping that it will get to 100% and start attacking that wretched mouldy cancer.  For the first time in a while, I am excited!!  I will have another test in a few weeks time to hopefully see it continue to rise.

While there is a lot of effort behind the scenes, hope is what I hang onto. I hope my immune system becomes 100% Dan’s. I hope this new immune system attacks the cancer. I hope that my cancer goes into long term remission. I hope that a cure is found for myeloma (and all cancers).  ‘Hope’ better pull up its socks and step up soon!!

Take care

Geoff

 

Stem Cell Transplant No. 3 – Update 4

 Hello my healing team,

I hope this update finds you well!!

With the new year in our rear vision mirror, and my 44th birthday now in the bag, there has been some time for reflection. When I think back to January 2017, I was excited, but I was hugely daunted. Daunted by the huge program of treatment that I was going to have o endure, daunted by the horrible stats associated with that treatment, and daunted by the fact that my family had to endure this with me.  

In 2017, during my most vulnerable of times, I found that I was full of fear, scared that I might fail, with the worst case scenario being death. The fear seemed very real with the passing of a few good friends who also carried the burden of cancer at a young age.  Now in 2018, I realise that 2017 was about proving to myself that I could face my challenges, stare them down, endure and make it to 2018 and beyond.  Now that we are in 2018, this year is about ‘Being Better’. 

On Monday of last week, I received my latest test results. My cancer is at very low levels. Woo hoo!!  However, my Allo Stem Cell Transplant is still incomplete as my immune system remains as 45% mine, and 55% my brother Dan’s.  I need it to be 100% Dan’s, otherwise it would be considered a failed procedure. So today, I will receive another ‘top up’ of cells, hoping to push my immune system over the hump in the road, and onto that 100% target whereby it can then start attacking that fucking cancer!!  I need my immune system to realise that it is now 2018, and it’s time to Be Better.

By focusing on Being Better, it enables me to look at all aspects of my life.  I reflect on the ‘Pillars of Happiness’ in my life. Those including my relationships (esp. with Sarah and my kids), my work, my finances, family and friends, charity and giving, fun and fulfilment, and of course my well-being.  I draw a line under where I am now and I think about how I want to improve these aspects of my life through 2018. How can I Be Better. In some of my Pillars, I have big improvements to strive for, others only require slight tweaking, and yet others I realise that I have very little influence over.  

2017 taught me that with love and support, I can overcome some pretty big challenges. However, I learnt that once you have done the hard work, you stop, reflect, take a deep breath, then prepare for the next challenge. Prepare by striving to Be Better!! 

Take care

Geoff

Stem Cell Transplant No. 3 – Update 3

Hello my healing team,

I hope this update finds you well.

Things for me are going quite well. Whilst I experience fatigue that slows me down, I am starting to feel more normal with the effects of the transplant radiation and chemotherapy fading. I have now started doing ‘normal’ things like yoga and swimming to build up my strength, visiting wineries to build up my good gut bacteria, and attending the AFL grand final for mental dexterity and strength. Actually, I am still shocked that my beloved Tigers are 2017 premiers!!

I am extremely fortunate that I feel quite well as I seem to have dodged the nasty symptoms associated with my recent Allo Stem Cell Transplant. Those symptoms are caused by Graft Vs Host disease which occurs when my brothers (legend Dan’s) introduced immune system comes into my body, recognises my body as foreign and attacks my organs. My research suggested that a bit of this was to be expected and ok, and that it was an indication that the introduced immune system was active and ready to kill cancer. However, too much is not good as it can lead to death.

Whilst I have dodged nearly all symptoms, I am suffering from a bad case of pubic-hair-itis. Dan always had really curly hair. It now seems that as well as Dan’s immune system, I also have his tight curly hair. I have never had curly hair in the past. At guess I should be thankful that it didn’t turn into red curly hair (not that there is anything wrong with that – as they say red hair is back in vogue).

I am now four months post transplant and I still have not experienced symptoms. It seems the reason for this is that the Stem Cell Transplant has not fully engrafted. For months, Dan’s immune system (or bone marrow) sat at 55% with my old immune system remaining at 45%. Ideally I need to have Dan’s immune system at 100%. Annoyingly, in the last month my immune system is fighting back, with Dans slipping away, and we are now 50% – 50%. Its a little like the the sibling rivalry Dan and I experienced as kids with me having to beat Dan up when he got a little ahead of himself . Dan has had the last laugh though as I now cruise arund with an Afro.

With Dan’s immune system slipping back, it will struggle to attack the cancer and is an indicator that the Stem Cell Transplant is failing. Massive bummer. In my pursuit to live to 80, the last thing I need is a failed Allo Stem Cell Transplant. In an attempt to turn the tide, I am having a Donor Lymphocyte Infusion (i.e – more of Dans cells put in). The hope is that the top up will initiate the turn around to get Dan’s immune system to 100% so that Dan and I can collectively kick some cancer butt!!

Today, I sit here in hope, but also feeling a little conflicted. Whilst I hope that Dan’s immune system picks up, I am hoping equally as much that my hair doesn’t get any curlier. Wish me luck.

Take care

Geoff