Thursday, March 4, 2010

When 'Complete Remission ' Isn't

Hi everybody;

I just wanted to take this opportunity to say some thank you's and fill in some informational blanks.

First I was overwhelmed by all of the calls, email and text messages received for my birthday.  Thank you all for keeping me in your thoughts.  I wish you to know that those simple gestures carry a much more positive energy that I can ever explain.  I tried to respond to each of them, and if for some reason I missed some of you, I'm sorry, but let me know so that we can get properly caught up.

Many have asked wanting a little more in-depth coverage of what's going on, so I will oblige.

This visit was to give me a super dose of chemo called Melphalan.  Fortunately, I only had to do the chemo one day, not the 4 days as we had been previously been told.   It's had different side effects than from the previous chemo treatments.  Primarily, and almost exclusively, nausea.  Peppy-la-Puke and are have become friends again, regularly.  To relieve the nausea they give you drugs, some which make you drowsy.  All things considered, and of all the side effects that most of the others get, I'll doing very well.

The stem cell 'replant' was an interesting process.  Almost anti-climatic.  The technician (Stewart) and Nurse Practitioner (Sammy) both made comments about how many stem cells they were able to collect and the concentration.  The stem cells come in a little bag that's frozen.  They bring in a machine that is simply a defroster.  They take my temperature and thaw the little guys to that temperature before infusion.  My one little bag, if I remember correctly, was labeled as having 5, 174,000 stem cells.  They assured me that that was a lot.  Stewart, the defrosting technician told me that for some patience they had to use 16 bags, over a 2 day period, to get the same amount of stem cells in a patient.  So, apparently there's one MORE thing that I'm full of, besides the obvious.  The other thing that blew them away was when they noticed that when they collected my stem cells, it was in one day.  I was the first one that Stewart had seen this happen to.  BUT WAIT, THERE'S MORE!  We were told that they were going to collect 3 bags.  Two for now, one for the eventual relapse down the road.  Sammy said that in fact they had collected 4 bags in the single day, and that she'd never heard of that before, so I have 2 extras waiting for me down the road.

Some of you have asked if after the initial chemo treatments I was miraculously C/R, or in complete remission, why go ahead with all of this?  The cancer's gone isn't it?  In a word, no.  Being C/R means that there are no concentrations of cancer cells in the usual places.  However, it doesn't mean that there aren't some lone free ranger cancer cells out there not being caught.  Hiding.  Waiting.  With my type of cancer, and the way that it literally exploded back after the first chemo treatments, we're not taking any chances.  So Melphalan it is now, and Melphalan it will be in a couple more months.  My numbers are going down, as expected.  In a few days I should be totally neutrapenic, or without any immune system at all. The stem cells that were infused are supposed to do the job of finding and destroying any of those free range cancer cells.  The chemo weakens that cancer cells, the stem cells finish them off.  Incredible.  They will continue to monitor me for the next 3 weeks to make sure that my numbers adequately come back.  Then a month to 6 weeks off, and we're back for one more round of it.  Talking with Carol, the head nurse for the entire facility, the second time is where we can probably buy an additional 2-5 years of remission, vs. the normal 3-5 years that they were getting with only doing it one time.  Either way, I'll have 2 extra bags of stem cells waiting for me then.  I love it when a plan goes better than imaginable.

Another interesting thing about the stem cell replant process has to do with the preservative that they put them in.  The Dr thinks it smells like creamed corn.  Stewart thinks it smells like dirt.  To me it was more like tomato soup.  Anyway, it was a little weird.  They give you a hand full of mints to suck on to help cover the smell.  Plus our nurse brought in a bottle of peppermint oil for my room.  That helps too.

For those of you would wanted more specific info, there you go.  For those of you would didn't, you're probably not even going to read down this far so it wasn't a waste of you time.

We're getting closer every day.  All of my care providers are very pleased with my progress so far.  It's been just over 6 months and we are still 2-3 months ahead of schedule.  We owe a lot of that to your prayers on our behalf, and of course the many wonderful blessings that I have received from my priesthood brethren,  Then, of course, the bottom line.  The miracle of the atonement through our Heavenly Father's plan and Christ's willingness to submit.  I'm another day closer to being back with all of you.  I'm extremely anxious, but also must continue to be patient, which I'm really lousy at.

If anyone wants to come visit, the best days would be the week starting Mar 15th.  The Drs say I should be on my upswing from my lack of immunity, and as long as the visitors are healthy and have been healthy, then you're welcome.  Love you all.  Can't wait to give and receive big, non-masked, firm embrace, hugs.

With much love, appreciation, and heavenly thoughts.  KEVIN

(P.S. Please call before any visits, there are times when visitors are not allowed when they are handing out medications, NO one under the age of 16 is allowed, and anyone who has any symptoms of illness or has for the last 10 days. This includes a slightly runny nose. Every visitor MUST check in at the nurses station before visiting any patients)


  1. cancer sucks. we love you.

  2. Kevin -

    Thank you so much for detailed update. My thoughts and prayers are with you. Please post soon. Keep the faith.



  4. Wow...Dale and Hillary didn't mention the smell to me...interesting I had no idea.I'm praying for you always. Love you all.