Hello Relapse Goodbye Remission Part 2 The calm after the storm

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Since I last posted a month ago with the dramatic news of my relapse in a rather angry and stormy moment, I feel so much calmer about relapsing. The storm has passed, and in its wake is a sense of rebuilding and adaptation to my new situation. I have seemingly made the transition to my impending relapse with resigned acceptance pretty much as I said I would do in my last post.  I don’t feel angry with anyone or anything anymore. In fact I have bounced back fairly quickly. Having recovered from a lingering cold and cough, I feel very fit and well and even happy.  After the initial shock and despair I have felt a strange mixture of apprehension and excitement about this new phase of my disease. I can only liken the feeling to starting school or a job or something new for the first time.

I may have been slightly distracted by my lovely holiday in Tromso, Norway, I managed to see the northern lights, went dog sledding and packed in a whole host of other winter activities too in spite of feeling below par with my cold!  The photos on this post were taken on my holiday for no particular reason other than they are lovely! I find the landscape and its muted colours very calming. I think I look calm and happy too!

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This holiday was also good for my confidence in terms of it being ok for me to go to India even though I am relapsing.  I feel reassured by my haematology consultant that nothing untoward will happen to me in India apart from a probable dose of the “squits” (his words), in which case I should drink plenty of water! In fact the couple of meetings I have had with my consultant have been very reassuring in terms of timescale and now being more regularly monitored.

The term used by my haematology specialist nurse to describe my situation is “relapsing” meaning I am no longer in remission as my kappa light chains aren’t in normal range but neither have I relapsed as I don’t need any treatment because my myeloma is not active or going to do any damage at the current levels and can go quite a lot higher before they do.

My kappa light chains have gone from 19.4mg/litre in October 2012 (just inside normal range which is 3.3 to 19.4) to 39 mg/litre in December, to 77. 5 on 9 January 2013 to 69.2 on 25 January to 89 on 15 February, my last test. My consultant has set a ceiling of 600 mg/litre for me to go to India and when they reach that level or I start feeling unwell such as anaemic, tired or bone pain I will need to start treatment. To put it in perspective, my kappa light chains were probably around 10,000 when I was first diagnosed and the amount of free light chains circulating in my body were being deposited in my kidney which couldn’t process them and caused my acute kidney failure which eventually led to the diagnosis of multiple myeloma.

The best case scenario is that I plateau around the level that they are now which whilst not normal is not causing any harm to me and so doesn’t need treatment, akin to those with smouldering myeloma or MGUS. It is a watch and wait scenario which could go on for months or even years but I think months is more realistic and years more hopeful as I have full blown myeloma.

The worse case scenario hasn’t actually happened but would have been continued steep rises in my kappa light chains from one test to the next so requiring treatment almost straightaway. I have discussed possible treatment options with my consultant for when the time comes as we need to start having those conversations sooner rather than later to be prepared. He has talked about having a further autologous stem cell transplant followed within 6 months by a “mini allo” (when the stem cells come from a donor).  This procedure was recommended to me after my transplant but I couldn’t have it because there was no suitably matched donor. Well the search has been reactivated and there is a potential 9/10 match available this time but further tests would be need to be carried out to determine the donor’s suitably. It was scary enough contemplating it last time so I don’t want to think too far ahead about that right now.  I am not ready to step back on the rollercoaster yet.  It is and always has been one day at a time since diagnosis and that is the way it has to be, but this mantra doesn’t mean I live each day as if it is my last or I feel under pressure to make the most of each day and party like there is no tomorrow.  However I am aware that this period of relapsing however long it lasts is precious whilst my health is good and I am not treatment.

So here is what I am not doing or being:-

  1. I am not being positive but I’m not being negative
  2. I am not praying as I am not religious
  3. I am not doing any affirmations or visualisations
  4. I am not going into battle with my cancer cells
  5. I am not going to worry
  6. I am not going to get my affairs in order yet
  7. I am not giving up cake!

And so I don’t sound too negative, here is what I am doing or being

  1. I am training and hoping to enter a triathlon in June/July whilst I am fit and able to (that involves 2 x swim,run and bike each week)
  2. I am getting on with my life and having fun
  3. I am going to India in one week’s time for what will be hopefully an amazing holiday
  4. Through some great online resources and contacts, I am learning as much as I can about my disease and what chemical and/or natural agents may be able to control it so I can do as much as I can to facilitate my survival and quality of life (nb this is not battling!)
  5.  I am as always trying to live in the present

नमस्ते

namastē or ha det bra!

13 Comments

Filed under Cancer, Health, Life and death, Multiple Myeloma, Myeloma, Relapse, Remission, Stem cell transplant

13 responses to “Hello Relapse Goodbye Remission Part 2 The calm after the storm

  1. So glad you’re not giving up cake… What else would we eat on holiday? 😉

  2. Willow

    Have a great time in India. Love you x

  3. Another excellent post, Wendy, so well expressed. So glad you’ve reached a kind of acceptance with how things are at the moment – I like the ‘I’m not being negative and I’m not being positive’ line!
    Have a fantastic holiday in India, wish I was coming too!

  4. Waiting to hear the travel updates and see your wonderful photos, too!

  5. Brenda

    We have much in common Wendy. It appears I may be falling out of remission after an AST 3 years ago. I too am not sure if being positive influences the outcome of cancer. What I do know is that it enhances the time I have. I am not talking about the grasping kind of pseudo optimisim, but meerley enjoying where I am at the moment. . I it hate when someone tells me to “stay positive””…like you must deny when you are not??? That is bullshit! it is what it is. I also am not in a WAR with Myeloma. We co exist.
    Do your trips! I love your Dr’s advice to go to India. I too am planning a trip to guess where..fiords of Norway! I will see Tromso next year.
    Thank you for your honest blog. I’ll follow your journey with interest. I am right behind you!
    Brenda

    • Hi Brenda,

      Thanks for your reply, I hope it takes a long time for you to fall out of remission. Have a wonderful time in Tromso, is it a summer trip or a winter trip? I think being positive is fine when you feel that way, but like you don’t want to feel any pressure to be that way all the time. I did my trip to India and will be putting a new post on soon about it.

      Wendy

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