It seems that I have fallen off the plateau that I had made my temporary home for the last few months before the descent into relapse. Just as I was settling in and adjusting to my new territory, I have yet again been reined in by my rising kappa light chains which have jumped rather dramatically from 77 mg/litre to 617 mg/litre in the space of a month.
I didn’t stay at plateau point very long but it was great whilst it lasted!
Needless to say I was as disappointed and surprised as my consultant who arranged for me to have a retest last week to see if the jump is for real or some kind of freaky fluke. There is an outside chance at most that there could have been a massive error in the lab testing but I am not holding my breath and I am not praying for a miracle or some such thing.
I mentioned in a previous post (Hello Relapse Goodbye Remission Part 2 The Calm after the Storm) that my consultant said as long as my light chains weren’t above 600mg/litre I could go to India. I feel so fortunate that I was able to go before the steep rise to 617 this last month.
So the plateau was short, January to April, to be precise, but I had adapted to the new phase of my disease and the fact that I was no longer in remission fairly quickly, once over the initial shock of relapse. I was hoping that this phase might last until September, which would be two years post stem cell transplant, a respectable period of time. I became comfortable with the new normal for me and was off again planning and booking trips, playing matches for the ladies team at my tennis club and starting a 16 week training plan for the Salford Triathlon in August. This was on the premise that I would not be on treatment and my light chains would remain in the bracket of around 70 to 90.
And now I am back to not knowing what I can do when. I feel like I get slapped down by my disease whenever I start taking things for granted. Logically I know that my myeloma isn’t capable of such vindictive behaviour, it doesn’t have a personality, being just some cancer cells doing their thing, so if I get into slapping them back we are entering into battleground territory and you will see from a previous post (Hello Relapse Goodbye Remission) that I am not battling my disease. However I do feel a little like Humpty Dumpty at the moment, getting to the top of the wall, balancing there a while, happy, and then falling off except that hopefully as I am not an egg, I can be put back together again!
I expect to be starting chemotherapy treatment soon after 20 months of being drug free since my stem cell transplant, apart from the monthly infusion of Zometa, a bone strengthening treatment. I am dreading it and my head is spinning with the various options that are on the cards. It is good that there are options, but options mean choices and I really don’t know how I am going to decide between them… but more of that another time!
This is likely to be my last post for some time with the blog subtitle “living in remission”. Of course I am hoping to achieve remission or stable disease at some point in the future but I am conscious that the remission I have enjoyed may not be as long again. Unfortunately the law of diminishing returns usually applies to a second stem cell transplant if that is what I decide to have so that I may only get one half to two thirds of my first remission.
Whilst the past 20 months have not been easy, they have generally been good. I have been able to live life well with no health issues and no pain unlike some with Myeloma. I want to appreciate and celebrate what I have done whilst being at the top of the mountain so to speak since from my stem cell transplant on 1 September 2011 and then latterly on the plateau. In more or less chronological order some of the highlights are:-
- cycling along the Monsal trail in the Peak District one fine autumnal day
- long weekends in London, Dublin and Alicante
- starting my blog
- a holiday to Tenerife
- seeing the Northern Lights and going dog sledding in Sweden
- playing the piano again
- a stay in Palma, Majorca
- running the Manchester 10k
- a holiday to Lake Maggiore and Switzerland
- a trip to Oxfordshire and Somerset
- joining an outdoor fitness class
- giving a patient experience talk at Myeloma UK info day
- a tennis holiday in Corfu
- a trip to Tromso, Norway to see the northern lights and go dog sledding (P)
- seeing a wild tiger whilst on holiday in India (P)
- playing (albeit badly )in a tennis tournament (P)
- training for a triathlon (P) (R)
- finally and hopefully going to Paris on Eurostar, to see Monet’s garden at Givernay (R)
Those marked P indicate done whilst plateauing
Those marked R indicate doing whilst relapsed!
Thanks to everyone that I shared some of these things with and those that supported me and encouraged me to do them.