I am a mantle cell lymphoma survivor

I walked out of my oncologist’s office today thinking, “How can my normals get any more normaler?”

Another four month appointment has passed.  Today at 10:30 a.m. I signed in at Dr. Goodman’s office for another “follow up” appointment.   I am feeling so well nowadays that I didn’t expect any surprises – like in relapse, you know.

First, I stood on that weight scale that did me no good my last visit.  This time I was dressed in summer clothing rather than heavy winter clothing, I am exercising regularly and I am often out in our yard gardening.  Mind you, my gardening isn’t just plucking dead flowers off the stem,  I am really laboring; I trim my flower gardens, fix sprinklers, dig holes, and so on.  This time I won on the scale!!  I lost a few pounds!!  Phew.

Then I met with Dawn, Dr. Goodman’s assistant.  We had the usual welcoming chatter and then she went on to tell my all my blood work looks good.  At this point in my cancer adventure, my blood work is what is the first indicator if all is well or not.  My CBC (complete blood count) was as normal as it can get for me.  Next Dawn said that my full blood work up showed all is well.  Of course, and to be expected, my IgG’s are in the toilet (IgG’s are viral fighting anti-bodies that my body no longer produces since my auto stem cell transplant) so I am scheduled for an infusion replenishing IgG’s in order to get a jump on the oncoming cold and flu season.

After Dawn palpably worked over my body, I asked her what part of the blood test are my marker indicators.  She said in MCL the LDH and Beta-2 Microglobulin are the two blood markers for any changes with my type of cancer.  Both are in the normal range.   Another indicator found on the CBC is the percentage of lymphocytes in my blood.  I write all this because I really never knew what my docs looked for.  I knew a CT and/or PET/CT scan shows cancer activity but that is done once a year.  So for the in between times,  my blood is drawn every four months or so to track any changes.  And, of course, any physical changes on my body are another indicator that something is up.  So between the regular blood draws and me noticing any physical changes,  that is how I can tell if something is off.

Mantle cell lymphoma is an odd and unpredictable cancer.  There is so much research being done  in MCL.  The information is a bit confusing to me.  Some world-renowned doctors specializing in MCL say this cancer can be cured, especially with the new forms of treatment (newer than my type of treatment).  Other docs say it is incurable and it is a matter of time before MCL rears its ugly head again.  So with this contradictory information I must keep on pushing forward and stand very uprightly in the fact I remain cancer free.  If I was to live by the back and forth debate the world-renowned docs’ research papers claim then I would be a wreck.

So in not waiting for an agreed upon consensus in the matter of whether MCL is curable or not, I will live my life with great joy and expectation!  I don’t sense a soon to be adieu, or even a later adieu, so I plan my life accordingly.

It is worth every penny to attend my nieces’ weddings, it is worth hiking to places I’ve never been before and paying the physical exertion price the next day; I keep planting more and more flowers in my gardens and I enjoy the presence of my two adult children joining us for dinner.  I look forward to camping and touring more of Montana and I want to plan a trip to Hawaii.  I also want to see more of the world.  I have a crazy idea of visiting Africa and the Antarctic.  I want to fly fish better (will I ever?).  I want to visit my daughter in Pennsylvania, too, especially in the fall in order to travel northward to see the beautiful fall  colors.  There is so much to do and life is too short to stay at home saving all our pennies for later in life.  (Yes, there is some financial  responsibility we must prepare for.)  And I want to see my girlfriends more often, like in an annual girls weekend.  I also want to see my cousins more often,  maybe meet at some wonderful, spa-like destination.  Oh, and I would love to ski faster and go down steeper terrain and learn how to ski powder.

I love my normal reports, I really do.


4 comments on “I am a mantle cell lymphoma survivor

  1. I struggle with my appointments; the doctor doesn’t routinely do bloodwork. I guess I’m just supposed to know if my cancer has returned. It’s a bit frustrating, but the further out I move from my original diagnosis (2 years ago yesterday), the less I’m consumed by the details . . . worries.

    I’m finally at the point of being able to see past the pain and move in to a fuller version of life. I enjoy my kids, and yes, I’m also enjoying the homeschooling. It’s given me a new-found purpose, and I’m grateful for the time to pour into my kids in a way I’ve not known.

    I’m glad for your good report and look forward to all the ways the Lord is going to use you in the days ahead. Never underestimate the value of what you’re doing; it’s reaping eternal rewards, sister.


    • x says:

      my father was diagnosed with mcl in 1999 died in 2000
      my brother was diagnosed with mcl in 2009 stem cell etc etc etc
      they are now saying the word cured in 5 years as he is now showing no signs

      it is hereditary as once i was not thought to be generally father to son

      my father cleared the way for many after him with the experimental treatments and has helped many lives ironically his own son..

      • Cyndi Heath says:

        Dear “X”,

        My, what a story! I think I heard a similar story, a father and son having MCL.

        Thank you to your dad for submitting himself to clinical trials, he not only paved the way for his son but also for me! If i should relapse, I would look for a clinical trial, too. The way I look at it, I did the accepted medical protocol for treating MCL, now I want to help another. From what I read, research is coming closer and closer to curing MCL.

        Happy days to your brother! And thank you for taking the time to read my blog – Cyndi

  2. Andrew says:

    Really nice to hear that all is going well – normal reports are the best. And you have a nice set of objectives – people and places.

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