Pat Killingsworth Pat Killingsworth

Reflections about yesterday’s good news…

I am so touched!  Lots of positive, supportive comments.  But you should see all of the emails I received!   Isn’t it great how we can help each other?  I gain so much strength and support from my readers…

All I can say is THANK YOU!

One of the emailers wrote they thought I my posts had become a bit “fatalistic” lately.  Another thought I sounded down.

Fair enough.  But I try and be realistic.  And by the way, by “months” I felt that with a failed SCT behind me–and the possibility that I had become refractory to Revlimid–I was confronted with the possibility I might only live a short 18 months or so.  It was a reality I needed to face.

And facing that reality is good for me!  Helps put things in perspective…

It doesn’t mean I’m negative–or dooming myself to a shorter life.  But let’s face it, gang.  We have lost many, many myeloma brothers and sisters over the past five years.  I’m sure most of you know at least one.

So who am I to be so hedonistic and self centered that I shouldn’t at least consider that I might become a statistic so0ner rather than later?

We all assume we will be on the right side of the overall survival numbers.  But I try not to forget that for everyone who lives longer than the stats say they should, that someone else didn’t make it to that point.

I feel an obligation not to forget those in the “unfortunate half.”

That said, I’ll always take some good news!  I just hope everyone reading this has some good news to share, too!

Thanks again for helping keep me up and positive.  But I will still argue that being grounded and realistic isn’t a bad thing–especially for a writer!

By the way, I heard from Danny Parker.  He reminded me that I am on a ramped-up supplement program to help enhance the effectiveness of the Revlimid/Velcade I’m taking.

I didn’t mention this in yesterday’s post.  I did mention how Dr. Alsina felt my SCT may have re-set my myeloma–and that Revlimid might be working for me again.

But how about those supplements?  Here is what Danny had to say:

Pat,

I was hoping you would at least be stable, but dropping the M-spike down to the lowest measurable value is even better.

Keep with the supplement schedule– full bore. All the stuff. Let me know if you are running short on anything (reseveratrol with pterostilbene, magnolia extract etc.). And the ursolic acid before an after the Velcade infusion and nightly with the Revlimid.

I’m betting our complimentary effort is part of the difference.

My wish for the early March SPEP:  m-spike zero. Monoclonal protein either trace or undetectable.

There is at least one other thing that we could put in the mix: Nigella sativa (black seed cumin):

“TQ [thymoquinone] also significantly potentiated the apoptotic effects of thalidomide and bortezomib in MM cells.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2990154/

Here is the brand I use, which I rotate with the Magnolia extract (two weeks on each at a time).
http://www.amazon.com/Amazing-Herbs-Black-Original-Plain/dp/B0011DHR4W/ref=pd_sim_sbs_bt_3

As always, thanks, Danny!  Black seed cumin?  Who knew?

By the way, our tech volunteer, Robb, enlarged the font which shows-up above.  Hope this makes it easier to read.  If not, let me know again and I will scrap it altogether.

It’s the same reason I use a larger font when my books are published–I want the content to be easy to read.  After all, we aren’t getting any younger, are we?

And have you noticed that your eyesight has gotten worse since you have started dexamethasone therapy?  No, you aren’t losing your mind.  Dex messes with your eyes!

Please don’t be afraid to write-in and share your good news/bad news anytime!  I love hearing from you…

Feel good and keep smiling!  Pat