Welcome!

Dealing with Multiple Myeloma.

Multiple Myeloma remains one of the nastier, most deadly cancers out there…. and I’ve got it.

My name is John Snippe, and in January, 2011, I was diagnosed with Monoclonal iGg with Lamba light chains, and 10% increase in the marrow, tumours at vertebrae T9 and T12, and T12 is badly fractured.

For the next while I will be dedicating  this website to an exploration of my experiences as I deal with the reality of Multiple Myeloma in my life.   This site will, as currently thought about, deal with that reality in four different ways:

(Note: recently diagnosed?  Please read my warning page!)

JournalMy journal will record day-to- day events of dealing with this cancer in with my life.  A blog/journal in the conventional sense:  short, personal posts or observations.  Links to various other places of interest.  How I feel, how I am, how I think. 

Not a lot of editing will happen here:  what you see is what you get, with the most recent being ‘on top’ (reverse chronological order).  Basically, the three below are more precise, more verbose, and more organized… but most of what ends up happening and being noticed will be written in the Journal first.  Visit the Journal →

DocZone: the doctors, nurses, and facilitiesCancer is a medically-intensive disease:  lots of tests and procedures.  Lots of doctor visits.  Lots of time in labs and hospitals, in strange machines, and with tubes and needles.  Lots of drugs.  Lots of money. 

It can all get quite overwhelming and confusing.  These pages will serve to outline what I have been experiencing as regards all the above.  It will be divided into sections, but likely those will all sort of flow together… but I can hope for organization, can’t I?  Visit the DocZone →

ResearchOne of the more interesting, and certainly more challenging, activities I have put myself to lately is trying to learn as much as I can about Multiple Myeloma and treatment options for it.  There is a tremendous amount of stuff out there, for sure, but not all of it is very good.  Indeed, some of it is quite bad.  And, as a Cancer Survivor Trainee, I have to be quite careful what I read: this is a life-and-death thing for me, so I have a lot of me invested in what I learn… fear, depression, and anger are very much part of my day-to-day experience as I learn more about this disease. 

My job in this section will be to come to a better, cleaner understanding of what it is I am learning about MM, and to catalogue that information in an easily accessible yet still accurate way (and hopefully I can beg some help from experts as I go… I haven’t asked yet, but intend to)  Visit the Research pages →

TouchedThe spiritual aspect of this experience is one that has really quite surprised me… and it started doing so very early on in the process (literally within two days of first major symptoms, back in September.)  Indeed, if it were not for the spiritual stuff going on all the time that I can observe, I’m pretty sure I’d be a full-on basketcase by this point. 

Faith:  it’s intangible, maybe, but it sure is real.  It’s as real to me these days as the sensory world I deal with, and just as interesting, frankly.  Visit Touched →

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This page was created on April 23, 2011, and was last modified on June 28, 2011

17 Responses to Welcome!

  1. Mads says:

    I’m sad to learn about your condition.
    Best regards
    Mads

  2. Eileen Laferriere says:

    I was diagnosed in April 2011. Will be having my transplant at the end of October.

  3. rodney says:

    I was diagnosed in June and am being treated with velcade and dex( little green pills)
    my faith has carried me thus far, but with my legs and feet hurting i am beginning to wish it would just carry me home.

  4. Fight hard and live strong. I was an very active sportsman and was diagnosed in 2006 after bones were inexplicably breaking during sport. I had local radio therapy treatment around the affected bones, then a series of chemo therapy for six months and finally a stem cell transplant. I had lots of knockbacks along the way with lots of horrible side affects from the drugs and the teatments (chronic pneumonia, blood clotting attacks in the lungs and legs) where I was unable to walk for months. Since the transplant in late 2007 I am back playing sport, back in the gym and running & cycling regularly. I have to be a bit careful what I do and stopped all contact sport but have a great quality of life. Best of luck!

  5. Susan says:

    I recently came across your site and have been reading along. I thought I would leave my first comment. I don’t know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.

    Susan

    Cancer Treatment Guide

  6. Bob McCaw says:

    I was diagnosed in 2006. Since then, I have had 10 radiation treatments on my pelvis, as well as a tandem stemcell transplant in 2008. I was on thalidomide as a maintenance treatment for one year afterwards. My protein levels have been well in the suitable range and the M protein count is a slight trace. The only med that I am on for MM is pamidrontate which is administered every 3 months. I was quite active prior to the diagnosis. Although I can no longer jog due to bone destruction in the pelvis, I use an eliptical machine and walk . Other than the aches and pains from the bones, I do suffer from fatigue and rest as required. I live north of Toronto and am an active member of the Toronto and District Multiple Myeloma Support Group. I urge anyone living with this disease to joining such a group in your area. They were, and continue to be very helpful. Keep up the fight and keep active Cheers Bob

    • Snip says:

      Thanks for your comment, Bob. I’m looking forward to my life getting increasingly more normal as well. Like you, tho, I will have permanent disability from this cancer, with my two badly compromised vertebrae… but that’s a small price to pay, comparatively!

      • Elisabeth Teunis says:

        I was diagnosed in 2006, stem cell transplant in Jan 27. Have done very well so far, but now MM is relapsing. I was diagnosed because I had a fractured vertebra, due to tumour. Had operation on this vertebra – kyphoplasty – in Hamilton. This has significantly reduced the pain in that area. You may want to check this out!

        • Snip says:

          Thanks for your comment, Elisabeth. I am in fact scheduled to have Dr Drew perform that very procedure on April 10th in Hamilton General on two vertebrae (T9 and T12)… very excited about the possibility of not being always scared about my back!

  7. Lileng says:

    I just found your blog and am so delighted and encouraged by the segment “Touched” – so well written and sincere. I admire your faith and how you thankfully praise God for His fingerprints in your life – your contentmentment (Ecclessiates) – your reference to John Piper’s Don’t waste your cancer – I wrote about it in my blog – Feb 2010. Every now and then, I pull it out to read and to remind myself, how to make sense if this journey I am on. We need the writings of others (including your sharings) to keep staying faithful and steadfast. It is not an easy journey and we have our ups and downs!
    God is gracious to me!
    Keep sharing your faith to encourage the faithfuls and also shine a light for those who
    still do not know our loving Heavenly Father.

  8. Kris Kelly says:

    I am so happy to have come across your blog. I too have MM. I was diagnosed 10/08, I have had two stem cell transplants then a year of velcade and revelmid, and then another year of dexamethasone. What a journey it has been.
    I am so impressed with your informative, thought provoking blog, which deals with many aspects of living with MM. I could really relate to your post referring to John Piper’s article-”Don’t waste cancer.” If you don’t mind, I am considering including parts of it on my own blog. Over the past few years I have also felt that this cancer has been a catalyst for me to change and improve my life and also has provided me with the opportunity to come closer to God.
    Keep up the good work, and may you remain strong throughout your treatment.
    Kris @ howtomoveamountain.blogspot.com

  9. Alan says:

    Australian, diagnosed in feb 2011, can’t work, trouble with back after 12 months of lenalidomide and dexamethosone, stem cell collection and zometa. Can’t see an end to the pain, want work back, doctors look, listen then book next monthly meeting.
    Pain in all sorts of unusual spots, beer helps.
    No work since June 2011, aching for a normal 9am start and 5ppm finish.
    Can’t see the end of it.

    • Snip says:

      And there’s the truth of it, eh, Alan? There *is* no end to it. And yes, beer (well, rum) probably helps, but that caused me more trouble than it’s worth so I gave it up years ago.

      Buck up… the only change you can make is in where you are standing looking at this, as far as I can tell. It’s the new reality of your life, so make the best you can of it. Crap words to write to try to help, but it’s the truth, I think.

  10. site says:

    The structure for your weblog is a little bit off in Epiphany. Even So I like your website. I might need to install a normal web browser just to enjoy it.

  11. Way cool! Some extremely valid points! I appreciate you writing this
    article plus the rest of the website is very good.

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