The test that was right that was wrong that was right

“Let everything happen to you
Beauty and terror
Just keep going
No feeling is final”
―     Rainer Maria Rilke

monet garden

When I got back from Paris a week last Friday on the Eurostar trip with my parents to see Monet’s garden, amongst my post was an odd letter from the Haematology department saying my appointment with the consultant had been cancelled and that an appointment had been arranged for Friday 17th May instead at 12pm. By the time I got the letter it was too late to ring them to say I had only just got back so it had to wait until Monday. I didn’t really worry about it but rang on Monday and spoke to the appointment secretary and explained that I had been away and unable to attend. I asked why it had been brought forward and was told something like the doctor was trying to clear down his list for 31 May when my appointment had been scheduled for.  It was rearranged for 24 May.

I duly attended, expecting to discuss the erroneous test result (see my last posts, falling off the plateau  and back on the plateau ) and perhaps to have another discussion about what treatment I might have when I do relapse bearing in mind that my kappa light chains were only 117 mg/litre, there was no immediate concerns.  I had the last appointment and when I arrived clinic was extremely busy but as I was having Zometa  (a bone strengthening treatment) as well, I went to the day unit for my bloods to be taken and my kidney function tested as usual. I had Zometa at about 3pm and still hadn’t seen my consultant but as I was leaving the day unit I bumped into him and the haematology specialist nurse as they were coming to find me. Seeing the nurse there as well made me feel slightly anxious as she doesn’t normally sit in on my appointments. We went into his consulting room and he then told me that unfortunately the first test showing the massive rise in my light chains to 617 mg/litre was in fact correct and it was the retest that was wrong. I was completely stunned. He said that both tests had been retested several times and that it was confirmed. The lab were unable to give any explanation as to how they got the retest result so wrong.

My consultant said on that basis I was now relapsing and we needed to sort out a treatment plan pretty quickly. We discussed different options but my head was in a complete spin and I couldn’t really concentrate on what he was saying. I am to ring up in a few days time to find out the result of the light chain test taken on Friday and if my kappa light chains are over 1000, I have to make an urgent appointment to see my consultant and have my kidney function tested which is a big concern and possibly start treatment straight away. If they are less than 1000 I will see him on 14 June by which time a trial may be available which might be a good option for me. So unless by some bizarre chance my light chain test this time shows a massive reduction in my light chains, I will be starting treatment very soon and all my plans of doing the triathlon in August and a couple of holidays in September will be out of the window.

After the appointment, I was in shock and disbelief.  It felt a little surreal. I debated whether to go to a friend’s 60th birthday meal that evening but I did and it was fine but that night I couldn’t sleep and the following morning I was low and tearful and was thinking of putting off my friends visit to me for the weekend that thinking that my mood would be so low I wouldn’t want to see them.  I went to my outdoor fitness session in the local park hoping that it would raise my serotonin levels but it didn’t really have that effect, instead I was worrying about whether too much exercise would be stressing my body!

My friends arrived, it was a lovely day, I told them the bad news and by the afternoon my mood had completely lifted and I was dancing to salsa music round the kitchen and the garden whilst making dinner. I am still feeling okay, after all I am in no worse position than I was when I found out that my light chains had risen to 617 on 19 April. I adjusted to that after the initial shock and disappointment, then had the elation of finding out that test was supposedly wrong, had cocktails on my birthday with friends, went to London and then Paris in a celebratory mood ( I probably wouldn’t have gone if I had known my light chains were over 600). Monet’s garden was truly beautiful (aside from the drama of my mother falling over and breaking her wrist) and Paris was well Paris, the city of light!

It is a cliché, but life at the moment is truly like being on a roller coaster!

coaster

In fact dealing with the emotional effects of having myeloma is far more challenging than the physical effects at least for me so far. It has truly been a mind blowing experience. How I can go from feeling so desperately low and alone on Saturday morning to happy and elated by late afternoon is just as strange as the recent sequence of test results.

16 Comments

Filed under Cancer, chemotherapy treatment, Health, Life and death, Multiple Myeloma, Myeloma, Relapse, Remission

16 responses to “The test that was right that was wrong that was right

  1. Not ‘like’ as in LIKE, but as in completely recognising that bizarre dizzying swing from shocked sinking to salsa singing (I know you we’re dancing but I like the alliteration).

    So glad your friends’ visit had such a fabulous effect. Are you sure you’re not slugging down some steroids on the sly? Oh no, silly me, that’s probably to come.

    Love that poem too, Wendy. Perfect for us! I might have to borrow it at some point. We will get to Istanbul! x

  2. Gill Hart

    Hi Wendy   So sorry to hear about the test results.  Perhaps it’s a good thing that the retest was incorrect, as you had a good holiday, and may not have gone had you known the truth.  Especially good that you went, since you might not be able to go away in September. So pleased that you had all those arrangements to see friends as well, that you kept them, and they lifted you out of your depression so that you had a dancing good time.  Isn’t it wonderful to have friends like that!  I hope your rollercoaster levels out now, and has no more scary bits coming up!   Last couple of days have been great weather, and we’ve managed to dig out, lay, and back-fill the new septic tank outflow drainage, so we’re very pleased!  Going to parents now to lay base for their shed.   Keep busy, and good luck with it all.   Gilly xx

    ________________________________

  3. Sandra abraham

    Wendy I’m so sorry to hear this news !!!! What a bummer !!! Can’t believe they could get it so wrong !!!

  4. ronnie

    Wendy…WTF? I’m sitting in bed reading your blog on Memorial Day Bank Holiday here in San Diego…shocked once again by your news! I can’t believe that they got it so wrong, but glad that you got your Paris trip in as well as going ahead with your friends visit this past weekend. You’re amazing in EVERY WAY and I definitely wouldn’t rule out your Triathlon or September travels! Sending good thoughts (on Steroids) your way!
    Lots of love,
    Bruce

    • Hi Bruce, thanks for your support and encouragement re the holidays and triathlon, its a bank holiday here too, only difference is, it is wet as usual! Betting its dry and sunny in San Diego!

  5. Bruce

    Oops on the “ronnie”…;-)

  6. Hi Wendy,
    I am so very sorry to hear this news. I have no doubt that you will soon have a treatment plan in place and with your great spirit you will be giving that kappa light chain a well deserved slap down!

    I couldn’t agree with you more about the emotional effect of having myeloma is more challenging than the physical effects and your roller coaster is a perfect metaphor for this experience. You continue to be an inspiration to me.
    Love,
    Carole Leigh
    PS The poem is perfect!

  7. That totally sucks, to find out the first test was right. I ,personally , don’t handle stuff like that well am
    Nd usually go into a hole for a while. At least you got to go to Paris, and now ,well, you seem like a very strong person, so it’ll be one foot in front of the other as I say! Love the roller coaster pic!
    Best to you, here from northern Ca.

    • Hi Christina, yes at least I got to Paris, if I’d known they were 600 ish I probably wouldn’t have gone. Sounds like from reading your blog that you’ve been on the roller coaster a few times too!

  8. Brenda Cooper

    Hi Wendy,
    I am so happy you got to Paris!! I would be like you I think…if I had known about the change in Light Chains I likely would not have gone on the trip…stayed home and worried…..so much more fun….NOT!
    I enjoy your “thinking out loud” Wendy. You ARE a strong person. Thank you for your insights.
    Any idea of what your treatment will be? Bests of luck.
    Brenda

    • Hi Brenda
      I meet again with my consultant on Friday to tall about treatment, we are possibly looking at a trial comparing Velcade to Carfilzomib, both with the dreaded dex, followed by another auto transplant then a mini allo. Cant think that far ahead though as it is too depressing.

      Hope you’re doing ok

      Wendy

  9. Hi Wendy
    CDV is ok compared to CDT,so Slim says anyway,he starts CDR on Monday ,just got back from France, had to have a break before starting again,it takes awhile to sink in,but our attitude is we are going to have the holidays and Myeloma ones too,the hard part will be getting insurance,how Andy does it I do not know.Eve

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