July 2009

I made the graph at the top of the page because my recent blood tests showed a rise in the cancer levels which disappointed and upset me and I thought that it would be a good idea if I put the results into perspective. The paraprotein levels had been at around 12, and have risen to 14 in April and then 15. The graph helped me see that a level of 14, while it needs to be treated, is not a massive jump and certainly nowhere near as high as when I was diagnosed, when it was around 63 ish. I’d rather it was undetectable, or below 5 but it’s not, so ... I can draw comfort from the graph showing that it’s not all that high, and that my body has not been under a high burden of cancer for quite some time. I find it helpful to ask my Oncologist for printed copies of my blood tests - I don’t understand all of the the information on them but I do understand the most critical ones.

The latest news is that I am taking a 2 week hiatus from drugs, then will start on Revlimid - a drug that’s similar to Thalidomide but has different (and more tolerable?) side effects. I am hopeful that it will control the Myeloma without such hard-to-live-with side effects. And a change is as good as a holiday, right ?


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ruth and I waiting for our Oncology appointment, mid July 09.

Thalidomide, Nexium, Coloxyl & Senna and Sudafed.

me sitting up in bed, July 09

October 2009

This morning’s appointment with Rowan (my oncologist) brought some good news - Myeloma levels are stable and even slightly lower than last month. I am still having those nasty oesophageal spasms, a bit too frequently, but my new gastroenterologist has examined the insides of my oesophagus and found it a bit inflamed, could be causing the spasms. More to follow on that one. I also saw my cardiologist today (the same one that treated my father, which is a pure co-incidence, we were referred by different GP’s) and he is confident that the chest pain isn’t heart related. I am a bit medicalled-out at the moment, too much contact but I am pleased that the paraprotein levels aren’t spiraling wildly out of control. ! !

the inaugural ride of our new trike, Gus, along our Wonyip back track. (with Mark on the 500).

My mum Lois and partner Neil, at their home in Doncaster, prior to their recent upheaval.

Prophetic 45rpm single at Lois’ house, the title is about dementia, right ?

January 2011

I have another appointment with Rowan next week to check my levels etc. after a blood test yesterday. So this is the funky week between test and results. We just got back from 2 weeks in South Gippsland so I am also suffering a bit of culture shock being back in the city. I have a friend who is in the midst of a nasty cancer experience too which I find unsettling and upsetting, I hope she is doing OK.

August 2009

I am 3/4 of the way though my first month on Revlimid. It comes with the usual long list of potential side effects. I find it’s a bit “dangerous” to read through these, because the temptation is to start looking for them and reading side-effect into all kinds of normal sensations and that can be a bit crazy-making. I do check through it though and then mentally put it aside so I can be aware but not obsessed. So far, I have noticed less fatigue, but still low-ish stamina, less neuropathy (numbness in fingers and toes) but still the same tinnitus. A new one is severe muscle cramps around my stomach and back. They don’t last more than a minute, but are pretty painful.

birthday present from Mel - new birch trees for our backyard. We put them in these nice pots.

Lhasa was not much help, and preferred to relax in the Morticia Addams chair.

Suki was a bit confused as to what we were doing, but kept a close eye on us nonetheless.

Ruth, Dean and I playing some songs at the Landcare Barbecue, Binginwarri.

Louis, Tam, Yoshi, Jann and Ruth enjoy dinner at our house

May 2011

It’s been a difficult couple of months for me, too much illness. I’ve had four gastro ish things, three (going on four) chest infections all pretty much in a row. I was alarmed about it, and felt so tired from the coughs that I wondered if I was sort of sinking down, energy wise. My trad. chinese doctor, Vlado, checked me out and has assured me that my underlying energy is good which is a relief. I trust him and feel reassured, he has given me a more supportive context for the other illnesses which we are dealing with. My cough is improving and energy levels have improved.

You can see from the paraprotein graph at the top of the page, that my levels have risen again. We think this is because the drop was a false reading as a result of changing pathology labs for the tests. We’re now back with the original lab and levels are kind of what we expect at the moment. So - no panic, just back to where we were.

September 2011

The last few months have been kind of extreme. In June my PP levels rose suddenly to 21 and Rowan felt that was a sign that the Revlimid (my main cancer medication) was no longer working and that the Myeloma was kind of jumping the fence. Likely treatment would be a course of Velcade chemo with Dexamethasone and Cyclaphosphamide then possibly another stem cell transplant. The prospect of that filled me with fear ! (really !) but Rowan decided to take a 6 weeks drug free break, then have another blood test and comparitive MRI. Some new Myeloma activity was evident but PP levels had only risen to 22 so we are currently on another 6 weeks drug free then reassess. We were really surprised that the MM hadn’t risen wildly out of control when we stopped the Revlimid but during those 6 weeks I was on some hard core Chinese herbs which seem to be doing what they’re supposed to do. That is a happy thought for me as they’re way preferable to having another PICC line put in then 6 months of chemo. Also I am meditating, doing qi gong exercises and we have upped the ante on our organic diet to minimise unwanted chemicals in our bodies.

new drums at the farm, sunrise on the barn and newest additions to my copper-art, clogs and tee shirt collections

October 2011

Okay it’s now the day after my October appointment with Rowan. Ruth met me in the waiting room, I was late as I had lost track of time while having a catch up lunch with an old friend but Rowan swapped me with the next appointment, no problem so I needn’t have stressed all the way there in the car. It was a good consult, my PP levels are down 1 to 23 which is not conclusive that the Thalidomide / Dex mix is going to work but it’s a good start. Also other blood levels are fine. I asked him to check out my head lump and he had a prod and poke around and said he thought it was possibly a subcutaneous lump of fat or something like that - he didn’t think it was a change in the bone of the skull but that we should watch to see if it changed. I am hoping that it is something that my body will metabolise and will just go away. I forgot to mention to him that the lump “sounds” different to the rest of my skull when I scratch it … so there is still a thread of doubt in my mind but I will try to ignore that until the next official opportunity to have it checked out. Though it always takes a while for fresh news to sink in, I am genuinely relieved that it looks like I can stay on this treatment for some time and that it might reduce my levels. If that happens and we get them down again Rowan says we may reduce the dose of the meds to minimise side effects. Personally I would like to reduce the PP levels WAY down and tolerate the side effects in order to keep the disease dormant. I feel like whenever it is active it is building little communities and villages which ever so slowly expand and grow, as evidenced by the recent MRI’s. So if it takes a bit of medication to keep that in check, I’m for it. I don’t like the thought of my bone marrow being serrupticiously replaced by monoclonal paraproteins. Dumb-assed cells, cut that OUT !

misty spring sunrise, new national guitar and planting hundreds of mountain ash at the farm

March 2012

Since my last note, there was a steep rise in Myeloma levels as you can see in the graph above. You will also note a steep drop as well, that’s because we stopped pussyfooting around with the drugs I had been on and dumped a load of intravenous chemo on my cells collective “ass”. Though this also means a rise in the side effects and has affected Ruth and my quality of life somewhat, we’re coping and I am just SO GLAD that the graph is doing what I think it should. I have started the third of four months of Velcade cycles which means a trip to the Oncology Day ward three weeks out of four (yes, I get a week off for good behaviour). And I have grown to really value that week off ! Then after these four cycles I will start reducing to two weeks per month for two months then drop to one visit per month providing that the Myeloma levels are controlled at that dose and frequency.

In dealing with the whole cancer thing, we find it’s a mix of very proactively researching and understanding what is happening, and then surrendering to the necessary medical treatments which are usually daunting to some degree. I have to say I would be a hopeless basket case without Ruth’s constant support and understanding. Really I mean that. I can only deal with this the way I do because she is right here with me.

So for now I am in a state of knowing it’s all good news, but feeling fairly crap much of the time. I am looking forward to less visits to the day ward and climbing a bit further back up the quality of life ladder.

Mum’s house finally sold, trailering at Wonyip, book signing with the wonderful Nile Rodgers

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July 2012

I have amended the graph to include today’s results ... I am VERY happy, my PP levels are now down to less than 2 which is not that far above undetectable. This is much better than I had anticipated and means that Rowan has dropped my chemo regime back to 2 treatments per month (down from 3). I think this will give me a much better chance at recovering between cycles. Previously I felt better on my “week off” but never reclaimed the ground I had lost so I felt my physical condition was slowly worsening.

The rest of my blood results are also good meaning that my kidneys are OK, my immune system is reasonable and despite how I have felt, my body is dealing with the drugs reasonably well. This is great news to me and very encouraging as there is a tendency to worry that I am not in good shape to be fighting off much. I guess that’s one of the reasons that I find it important to keep track of the medical measurements, because I can factor those in to how well I perceive that I am doing. It’s an important psychological aid to me - like the medical version of self-confidence.

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Moving mum’s furniture to the barn, me on a trike, frosty dawn at Wonyip

August 2013

Here is the super short version, and two news flashes.

re: Multiple Myeloma - I am on a "break" from treatment, Velcade chemo stopped due to govt. funding also stopping. Some side effects have faded, most continuing but tolerable.

re: one of my cervical (neck) discs has completely given up, causing relentless pain and loss of arm function. I have worn a soft neck collar for months in the hope of recovery.

News flash 01 - Neck recovery is not sufficient so I had surgery on the 23rd of September. This has fused the joint where the failed disc was and should relieve all pain and restore arm function once I have fully recovered. This could take a few months I think.

News flash 02 - Latest blood test shows that the Multiple Myeloma is back. This is quite disheartening, but the levels are low and we hope they will take a long time to increase. Currently I need no treatment. There are drugs in clinical trial in Melbourne that would likely be effective for me so at some time in the future, hopefully next year, I will take the best option available, should my MM levels continue to rise. You will notice from the graph above that I had a remission of some eight months but six of those were during Velcade chemo ... dammit.

Ruth’s shadow next to mum’s ashes in an urn, me after my neck op, and our new (quite old - 1874) cottage piano and pedal organ (1895)