Sunday, July 31, 2016

Abnormally Stable?

That's what he said -- abnormally stable. This was during my last visit with our oncologist and reviewing the latest results (this was back on June 3rd). I asked if he could summarize where we were and how he would describe it. He paused for a fairly long time and that was his term.  We did have a good moment, though -- he paused again and looked at us and said, "It is beginning to look like maybe you guys were smarter than me on this."  He had recommended going back on chemo back in April or May of last year -- he was acknowledging that our decision to wait and not do that seemed to be paying off.  I love a humble oncologist!  In my experience, humble MDs are fairly rare, and I greatly appreciate him.

In some ways, I think it is apt. Sometimes, because I am out and about and not on chemo at the moment, people think I am in remission. "Abnormally stable" does not equal remission. Sometimes I call it "limbo" -- I am in between.  I am not in remission, but I am not progressing or deteriorating.  It is clearly still affecting me.  My results from May were somewhat encouraging in that some of my blood cell counts were up, and I was feeling a little bit better. That has slipped a bit in recent weeks, possibly because, yes, I have probably overdone it again.  :)  Possibly, I am incorrigible?

However, we either have a glitch now or the story is changing.   :(
Here's is an actual graph of my M-spike results from two years ago - July 23, 2014 - and July 27, 2016, so a two-year span:
The M-spike is the main measurement I worry about (my doctor worries about that and many others). The drop you can see above is when I began chemotherapy.  It lowered me from 1.9 to 0.5 going into transplant, then there is a flat line because we did not get any measurements for a while. You can see the "stability" in the measurements after we started looking at it again. What worries me:  look at the last 4 dots -- there is an upward trend: 2/26 - 0.60, 3/30 - 0.60, 6/02 - 0.6999, and now it just showed up:  7/27 - 0.80.  It has been at 0.7 before a couple of times and then dropped, but now it is the highest yet since transplant. Also, my free kappa chains have now crossed the line. Normal plasma cells take gamma globulin proteins and hook them together into long chains that cannot pass through the kidneys' filter and are therefore just immediately excreted. Myeloma cells, because they look like plasma cells but are NOT doing their jobs, don't do this connecting, so you get what are called "light chains" which are smaller, go through the kidney's filters and actually can start to damage the kidneys. This is a big thing they look for. Upper level of "normal" for these light chains is 19.4.  Here's my readings:  3/31 - 18.5, 5/27 - 18.56 (pretty stable), now 7/27 - 28.3  arrrrgh!  Together, these numbers suggest to me that the cancer may be starting to kick into gear......?

I don't technically have an appointment with my oncologist until September......but these numbers worry me.  I'll have to call the office tomorrow and speak with the care nurse.  I am hoping that we will see the wonderful effect of regression to the mean occur next month; those who passed statistics may remember that this means that if these are random fluctuations, the next number should drop down closer to the average.  I am just worried that this may not be the case. My other blood cell results this month also show ongoing suppression in my white cells, red blood cells, hemoglobin, and as always platelets (curse you platelets!!).  Anyway, that is my cancer update portion of our show.

Oh! I forgot to mention that part of the reason I may be tired is not only traveling and stuff going on in my bone marrow, but I got 5 immunizations shots last week and one this week (6 in 6 days) with BIG honking needles!
Yowch!  They did hurt, but I think they are important to trying to keep me from contracting something really nasty.

Now, for our segment called On the Other hand....
I was chemo-free for our son's wedding!  Our oldest son, Benjamin, who lives in CA got married on July 3rd to a wonderful woman named Sonal Mittal - she is smart, funny, warm, and caring. We went to Mission Viejo for the wedding that was performed in an outdoor venue by a Hindu priest. It was a fascinating ceremony, and her family was truly amazing. They were all loving, open, friendly, and welcoming of us. I now have family members in India, Germany, and many other parts of the country and the world. The day before the wedding, we had a rehearsal so that us westerners would know the purpose of the various parts of the ceremony and our roles, and so that we would be prepared. That evening Sonal's parents, Arun and Shubra, hosted a Sangeet at their home. I learned several things from this.  First, how warm and loving they were, and second -- Indians know how to party! The food was terrific and the dancing went on -- and almost EVERYONE danced from young to old. I did my best and participated and did a lot of clapping and stomping my feet!  The wedding itself was beautiful and the young folks danced enthusiastically into the night.  It was a joyous and wonderful celebration. Here's a taste of how it went:

Now for the "overdoing" it part:  we also spent some time at Laguna Beach, and played in the waves -- boy are they STRONG!  On the way home we stopped at Zions National Park. An item on our bucket list is to visit more national parks. This past year we have been to Yosemite and Zions. We took a hike up to Observation Point which nearly killed me coming down. I had a walking stick and Patricia was my other major walking support. It was gorgeous, exhausting, and stupid. But, here's what it looked like when we were about halfway up:
So -- cancer sucks, but life is beautiful. We had some wonderful experiences, and we welcomed a beautiful new daughter into our family whom we will cherish.

Thank you for reading. I'll let you know what the doctor says and what is coming next.