“What cancer does is, it forces you to focus, to prioritize, and you learn what’s important.” – Joel Siegel
It felt good to be away, but nagging in the back of my mind as I was enjoying my family back east and little to no connectivity when at the farm, was “How is everyone doing? What’s happening over at The Beacon? What’s Margaret uncovering?”
I really work hard to be “in the moment” – present time if you will. Enjoy what I’m doing while I’m doing it. I did pretty good, but you were never far from my mind.
Dave and I don’t talk much at all anymore about his cancer or MM. He is living his life and loving it. I still of course, keep my finger on the pulse, the latest news, studies, emails with folks who have reached out to me, FB, my blog, etc. I think it’s pretty balanced in my life, not all consuming, but I’m not sure really. I can only go by how I ‘feel’ and it feels OK.
Anyway there have been a couple of news stories that have hit the broader news agencies. One is a shortage of cancer drugs for treatment. Quite disturbing. One of them, at least, is one used for MM, Cisplatin. We live for the day when the expensive drugs we are on become generic and now we discover there is so little money in it that the pharmas aren’t spending much time manufacturing them and it is becoming a serious problem. Great, just great. Don’t get me wrong, I’m a pure capitalist, but I didn’t know there was so little profit in it and that we would be facing this new struggle. Sigh…
Matt Damon’s father is fighting MM, but is happily in CR. Congratulations Mr. Damon.
ASCO is in full swing and The Beacon is there, reporting. THANK YOU BEACON STAFF! I hope you all realize just how lucky we are to have such a great online resource for keeping us up to date on the more conventional treatments and research studies for MM.
Margaret’s Corner and her companion FB page are always digging up the latest cool news for complimentary/alternative treatments of MM. She is amazing.
My dear friends who are potentially going to be part of the Natural Killer Cells treatment, have been hanging in. He has been getting treatment while he awaits his opportunity to participate in this new cutting edge technology. His children are being tested for potential stem cell match. I have tried to be respectful of their journey right now, but I’m anxious to learn more about what they are doing, as they are!
My caregiver friends who have lost their loved ones continue to move forward in their lives with such grace and courage that I am in awe.
It’s going to take me a while to get all caught up with things, as I have many other things to occupy my time, a good thing.
Stay strong, have courage, enjoy your life today, don’t let worry steal your joy and peace. You will deal with whatever comes when, and if, it arrives. Caregivers, take care of yourselves – please, we all need you and value your efforts.
Those of you newly on this journey, take solace in the fact you are not alone. You have friends sharing in your journey who will hold your hand and help you through. Check out my “New?” tab at the top of my blog to get you to what you need NOW and direct you to information that will be timely and up to date.
Very well said ladies!!
Love,
Rene
Karen, I’m overwhelmed, you have touched me deeply. I hope I do meet you and Hugh someday (and sadie!)!!! Keep doing what you are doing it sounds like you are working on all the right things! Meeting folks like you online makes it all worth any time and effort I have put in. It was my fondest hope to bring some sanity and calm to an otherwise INSANE event in our lives! It does indeed take some work and practice to change our thinking, but it gets easier and easier and so worth every effort!
oops, hit the submit botton by accident –
WHILE IT WAS HAPPENING, no less, and continue to reach out and inspire us all to live life to the fullest, find others to help, and assure us we are not alone. love and hugs to you and dave, from my hugh and me, karen
hi lori, thanks so much – kindred spirits! that makes my heart sing! no, you’ve never met my hugh, but he, too, is a sweetheart! and is beloved by so many people (and doggies – our sadie and our grand-pup girl, bear) he’s the kind of guy that makes instant, deep connections, is totally non-judgemental, and accepts and includes people with ease and joy. he is the best thing that ever happened to me. i hope you can meet him someday – he would hug you and tell you thank you so much for all you have done to help us and thousands of others navigate through all the misery, changes, and challenges myeloma has presented. he would have tears of gratitude in his eyes, just thinking of how much effort and love it’s taken for you to give so much of yourself – such a wealth of needed information, baring your soul to tell dave’s and your story –
All great stuff Karen! We are kindred spirits! Are you the “other half” of the Hugh that I came to know last year in Boston? A sweetheart. He is in my thoughts and prayers daily lately. Hugs Karen!
hello lori, your encouragement to not let worry steal your joy and peace, and to live in the present is some of the soundest advice you could give. i’ve been on this myeloma journey with hugh less time that you and dave, more time than others who are new to the world of myelomaville, and there is not a single coping skill that i can think of that is more worthwhile developing. as with any skill, one has to practice it; practice AWARENESS when worry creeps in, then make a firm avowal to switch gears mentally and emotionally to come back to the here-and-now. BREATHE and think of all the positive things that are good in your life, right now. and remember – that’s why they call it the “present” – it’s a gift!
Have you noticed how when you hear folks complain and whine about things, you must find tolerance deep inside your soul? Since this cancer experience I must say, that I truly have fully let the other stuff go by the wayside. I laugh at nonsense that used to irritate me or make me frustrated, angry, etc. It is truly liberating and one of those things you wish you did sans the cancer experience!