One of her very last contributions to the listserve was a thank you to everyone on the listserve for their kind words about her recent troubles, and a request that we not CLOG up the list with these emails, but keep about the business of the list. An example of her caring and compassionate nature can be witnessed in one of her quotes that one member of the listserve offered up as her very favorite "Boogie Barb" post. The post was as follows and was an answer to a myeloma newbie who was afraid the question they were asking might be too elementary for the listserve:
NEVER be afraid to ask this group anything!!! But also understand thatfor some questions...such as yours...there isn't a solid answer.
How/when will we begin our final descent? Many of us will relapse slowly...with our various blood counts going up a little each month until it clearly shows increasing activity. We may or may not have any symptoms at this time, and hopefully our oncologists will help us decide when it's time for treatment. That treatment may or may not work. If treatment doesn't work, there are probably more to try. Eventually, nothing will work and with our families, we'll have to decide when it is time to begin letting go.
Others may suddenly develop kidney problems or break a bone or have spine pain. This could mean a more rapidl decline, and may be harder to treat. But, again, there would be every hope of getting past this crisis and doing well for many more years.
Part of YOUR answer should be based on your own history with the disease. Were you diagnosed with the myeloma raging in your system? Was it hard to get this under control? How many different treatments have you been on? Have you "failed" them by the disease coming back quickly? These are some of the questions that can determine how aggressive your disease has been. What's your quality of life like now? How have previous treatments been on your QOL? Can you picture yourself continuing to fight this disease or do you feel simply spent?
From everything I've learn in over 20 years of dealing with myeloma is that it is one difficult disease to pin down. There are so many scenarios. I've seen some of my myeloma friends die peaceful deaths after many years of
controllable illness; others have progressed quickly. There just isn't a true answer to the questions that you - and everyone else on this list - really want to know, which is basically, "What the hell will my future be like and when and how will I die?"
If anyone on this list HAS answers to those questions, I will happily defer. But because definitive answers are impossible, that's why this whole "live each day" stuff becomes a true goal. Of course we all think of what's in our future regarding myeloma but life can take many curves we just can't comprehend. Take me: Two weeks ago, I finished my final round of velcade, having finally achieved that illusive "complete remission" with no evidence of disease in either my blood work or my bone marrow. Hurray!! But three days later, my oncologist called me into his office to tell me I had developed "myelodisplasia symdrome," which can be a precursor to leukemia and often develops in people who have been treated for other cancers. Indeed, all the treatments that have kept me going for those 20 years, were probably factors causing this new problem.
Right now, all I can do is "watch and wait" BOTH the myeloma and the MDS. Some remission!
So, that's why "live each day" becomes the only way to live. I've moved on from my initial horror with the new diagnosis because I HAVE to. I've gone to a nearby beach, been back in the 1st grade classrooms where I volunteer and get lots of hugs to make these days special. And yeah, of course, I sat around stunned and pissed as hell, but at some point, I had to just let it go. IWhat I know is that the sun will come up tomorrow. I could choose to stay in bed; paralyzed by my fears, or get up and try to have a decent day. I'll have lunch with my best friend, and spend time with my daughter. Should be an okay day. What will my days be like in a month? Haven't a clue. I just know that whatever happens, I'll find a way to deal with
it. In the end, most of us DO. I know folks on this list who have endured incredible journeys and I am in awe of their ability to still find joy. I strive to be like them, and like so many of the senior citizens I worked with years ago, who showed such resiliency in the face of tragedies. We endure. Maybe that's the only answer I can give you. As a minister once said, "What we fear, we will endure." I hold those words with me as I continue sailing in uncharted waters.
Sail on, and keep hangin' in.
Barb, may you rest in peace and keep hangin' in with the Lord, and recognized your passing is painful to so many that you have touched. Good Bye Barb/Gary Petersen