Wednesday, July 16, 2014

How to Cope with Summertime Heat!

It has been an absolute whirlwind of activity for the past three weeks! Joe and I have been entertaining our three granddaughters from Arizona since June 26th, in addition to all of the other visitors that also arrived during their stay!

Since the girls are eight, seven and five, the bulk of activity fell upon our shoulders and since we do not have the good fortune of having them live near us, we wanted to make the most of our time. Being that we live in Idaho, much of the activity happened outdoors; if you are like me, that probably means that the heat and sun, are not your friend!

I do not have the energy to fill you all in, on all of the great things that we did, but I did want to share my number one lifesaver with you, as quickly as possible. It is a Frog Togg Chilly Pad! It is the coolest product that I have ever found; you wet it, wring it out and put it on your body. It not only keeps you cool, but lasts for hours. To reactivate, all you have to do is re wet it. It is truly amazing and no, it does not wet you or your clothes! It is heaven on earth and I am not kidding! It literally has been a lifesaver.

I used to take a small cooler with small ice packs everywhere I went during the summer, but now I just carry my “rag” around my neck everywhere I go! Lol They do come in a multitude of colors, and I think that I may order a few more, because after all, we MUST be stylish when wearing our “rags” around our necks. Right?

So, if you are dealing with heat issues like I do, I encourage you to give this a try; you won’t leave home without it! (and don’t laugh, but there have even been a few nights that I have taken mine to bed!) Go Chilly Pad, Go!

Me and My Rag

Thursday, July 3, 2014

CML Side Effects Return with New Bottle and New Lot Number

This summer has been a whirlwind! After getting the garden started, flowers planted and a new fence around the orchard, Joe and I drove to Las Vegas and picked up our granddaughters. We have had the most fabulous time, thus far. I have had the good fortune of not having any “pain” related side effects, so we have been able to do many things.

Due to an increase in my PCR twice in a row, I am back on 140mg of Sprycel; two days ago a received a new shipment. After only one dose, the pain in my back has returned. I am so bummed; it is severe enough to slow me down and put a damper on my summertime fun, with my family. I am considering calling the pharmacy to ask for a new shipment, with a different Lot number to see whether or not it makes a difference.

The return of the pain is a great reminder to play hard when you can! Down days are going to arrive no matter what, and I am so grateful that we have been going Mach 1 since the girls arrived, as I have no idea how the rest of their visit is going to go. Regardless, time spent with them is priceless.

Is anyone else on 140 mg of Sprycel? If so, I would love to know your Lot number and side effects.

Tuesday, June 24, 2014

CML is Unpredictable: Count Your Blessings and Pray for Strength!

What I am beginning to learn, and accept about living with cancer, is that it is unpredictable. This past year has been filled with a plethora of challenges, sprinkled with some triumphs. I have struggled greatly with side effects from my daily medication that attempts to keep my cancer at bay, but I have also had the euphoric feeling of actually coercing my leukemia, into a non-detectable state; twice!

The non-detectable state arrived in the midst of my most difficult side effect period, but it was a trade-off that I was happy to make.  What this non-detectable state represented to me, was the hope that I would be able to reduce the dose of my medication, thus reducing my side effects, while continuing to maintain a great response to my medication. In addition to a lower dose of medication, and a better quality of life, a non-detectable PCR also lends itself to more favorable, long term prognosis.

So, needless to say, this overly optimistic person truly believed that not only would I remain in a remission state at a lower dose of medication, but that eventually I would be one of those lucky people to enter a trial that would allow me to continue to maintain “remission” without medication.

Hahaha….joke’s on me! After six months of a non-detectible state, my BCR/ABL gene raised its’ ugly head once again. It showed up at a higher level than it has been since my diagnosis; .4% on the International Scale. I know that that may not seem like much, but I certainly would have preferred a zero, after the decimal point, prior to a number.

What this actually means is that 4 out of every 1000 cells are jacked-up! This is a significant increase in my CML world, and it means that my response no longer qualifies as a major molecular response (less than 0.1%) which is the goal for everyone beyond a year of therapy. I am on year three, plus.

What does this mean? Well, the first thing that this means is that I increased my Sprycel from 70 mg per day, to 100 mg per day with a repeat of my PCR after four weeks. (I am hoping for lab error?) Fortunately, the increase did not cause too many additional side effect issues. I took the Sprycel diligently every day, and repeated the PCR test: results were essentially the same; .432%.

I received that news a few days ago, but have been too distraught to write about it until now.

You may be wondering, now what? Well, besides having the wind knocked out of my sails, what this means is that my Sprycel is being increased to the maximum dose: 140 mg six days a week. PCR to be repeated in August, when I see my oncologist, which means that I will be living on pins and needles, until the PCR results in September; a total suck!

So far I have taken the increased dose twice; and I can already tell that it is going to be a long and bumpy road. The pain and numbness is already returning in my hands and arms, and the fatigue is settling in. I am going to accept the increased side effects as signs of my body working really hard to put this leukemia, back into remission. I have done it before, and I can do it again!

Fortunately, it is summertime and I will have the best distractions possible, arriving in two days! Joe and I are so excited to begin our revolving door of visitors for the summer. There is nothing better than grandkids to keep me distracted from dwelling on my latest test results. Hopefully, I will be able to keep up with, and enjoy them the way that I want to, but whether it is playing in the yard, baking cookies or just reading books, it will not matter, as we will be sharing the most precious gift of all; time.

I am so looking forward to spending time with our family; I love them all so much!

I will attempt to keep you updated as best I can, and I wish for all of you a great summer!