Regrets – No I can’t say that I have any

A while ago I mentioned that with myeloma you get a whole new set of significant dates that join your birthday, wedding anniversary, etc.  One of mine was yesterday, 6 May.  This was the date that I got my stem cells back during my stem cell transplant last year.

Now as you are aware, unless this is the first time you’ve ever read my blog, we didn’t get as much mileage out of that as anticipated.  My paraprotine (M-spike) registering in blood tests on 31 December but not sufficiently to quantify at that point and becoming a much more measurable 15 by 14 February.

When I had my stem cells harvested and right up to my transplant my paraprotein level had been zero an ideal position to be in one would think.

Looking back would I have done anything differently?  Would I even have had the transplant at that point in time?  Yes and yes.

Yes, I would have had the transplant because it is was the best proven way to obtain a longer disease free progression.  If I hadn’t we would certainly have been looking back and saying that the reason the myeloma had staged a comeback was because I hadn’t gone down the transplant route.  Having done it we can at least say we gave it a go and it didn’t work for me.

Yes, I would have done things differently.  I wouldn’t have gone back to work full time.  Even though I worked only one five day week between the end of August and the beginning of February I was working 9.30 until 18:00 on the four days I did work with commitments on my day off.  We got Buddy, which I don’t regret for a millisecond, but this added other things to do and I aimed to walk him twice a day.  And I admit it I did feel overwhelmed at times.  Then I put myself under pressure to do a handmade Christmas, which I have done in the past, but maybe it was too much in the circumstances.  I also had other commitments that I tired to cram in as well.

By not giving in to the myeloma, by attempting to do everything I would have done before and trying to make up for not being able to exercise like I did, by not taking it easy maybe I allowed it to sneak through weakened defences when I got the stomach upset and ear infection.

I don’t know.  I do however know that it’s a fine line between not letting it stop you living your life as much as you want to but yet not living it so much that it causes you harm.

Since being forced to take it easy during the two weeks in hospital and the lethargy that accompanies some of the treatments I have had very little bone pain.  I know I have previously stated that I had no pain it was more discomfort and it was compared to how it had been but know I truly know what it is to be pain free.  I wake up on my back some mornings not because the ‘discomfort’ has woke me up but just because it’s time to wake up.

It is hard to set yourself new limits, especially I think at an age when you shouldn’t have any, but having experienced life almost pain free (with the aid of paracetamol and codeine) and feeling better for doing less, it is worth it.

10 responses to “Regrets – No I can’t say that I have any

  1. 🙂 I’m really glad you are pain free!! I won’t say I know how you feel because I don’t! But my dad has something wrong with his hands and has been close to tears with pain! I’m glad there are no regrets too!!

  2. How right you are Paula I remember the christmas before my sct I was trying to do everything as I have always done and ended up passing out in a shop!!It took a while longer before I found the compromise between living and being an invalid, I still forget at times even now but on the whole I have learnt myeloma is a part of my life but just not my whole life Bridget x

  3. Sandy Banks

    Learning to balance life’s desires with life’s capabilities is a challenge you seem to have mastered and a good lesson for others trying to cope with this nasty disease. Although Buddy has been difficult at times, perhaps even his behaviors have been a way to re-focus away from MM at times, undoubtably a good thing, unlike the MIL who only seems to make things worse!
    You are an amazing woman, Paula, and I’m glad to have met you and only wish it wasn’t because of MM… I continue to intend that your medical team finds the right combo for you, for the highest and best good of all concerned, including Buddy and B naturally, so be it and SO IT IS…whoooooo! Amen.

  4. Tim’s transplant was a complete bust but we feel the same way. When you hear of the remissions that are possible, how can you not give it a go? His doc continues to recommend SCT to every patient who passes the pre-testing for the procedure no matter what age they are. Though there are a few things I know now that I wish I knew then, we do not regret trying the transplant. I think it’s so hard to find a balance between what is too much activity, and thereby a bit too much stress, and what is not enough. With Tim, it only took 6 weeks of not working when he had the flu really bad 2 years ago, to realize that he needs to keep busy or he can get into a funk. Always hard to find that happy medium.

  5. You can’t change any of it Paula, it is decided day by dayand is correct at the time x. Been t\here and going too. x, Poke.

  6. We make the best decisions we can under our circumstances and I’m thankful you have no regrets, just things you might have done differently. I do believe you are an “energizer bunny” and can’t be slowed down by much, which seems to be a part of who you are as a creative person. I pray your treatments are effective to get that M Spike back down to zero! Sure would love to cross the ocean and meet you someday, thanking you in person for our adorable myeloma buddies and puppies!

  7. Julie Zimmer

    You are young and have a reservoir of strength to draw on. An SCT was a no-brainer. Not to do so would have been to miss a potential opportunity.
    The MM “penpal” we were lined up with through the Leukemia and Lymphoma group was/is an amazing guy, but I remember him saying he wasn’t going to do SCT etc – if it came to that, he’d let go. He was riding a recumbant bicycle thousands of miles a year – truly remarkable – but now he has decided to try for an SCT and his harvest didn’t yeild enough cells. So, I say, harvest now. Have the SCT while you are young and strong enough to bounce back. It makes perfect sense that you did it.

  8. Paula,
    Sometimes you make me laugh so hard my ribs ache. Sometimes I’m intrigued by your crafts, the color of the yarn, or your ability to accomplish twice as much as I do in a day. Today I’m sad at the painful challenges that, for the moment, quiet your vibrant voice.

    But I read your work every day because it describes a joy and love of life that I find pragmatically inspiring. I believe, as you come through this most recent test, your writing will reach into new territory, informed by the wisdom gained over the last year……. I look forward to it.

  9. You know, quite often I forget that you have MM. I will be reading your blog and it will be so full of crafts and dog business and family hilarities and m-i-l stresses that references to MM trip me up, and I think “Oh yes – Paula has it too!” Which is my long-winded way of saying – keep on keeping on and don’t let it rule your life. You’re doing great, girl!

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