Some much needed time off took me away last week for some R&R with some friends to Florida. Many of us in the northeast have had quite enough of old man winter and for many of us battling a Stage 4 cancer diagnosis, the cold can be one of our worst enemies. Some of my fatigue comes from trying to keep my body warm; chemo and other meds have left my extremities very sensitive and my fingers and toes can be purple and stay that way unless I can find some relief. This in turn makes me very tired which makes it difficult to concentrate and get anything done.
CaringOn has been busy, busy, busy! On Sunday, April 6th, another gift was given to a Caregiver in Baltimore, Dan K. Dan is a husband, father of 2 little ones, and a respected Baltimore Police Officer. I almost didn’t make it to their home today because I have the good fortune of being extremely constipated. (I can’t believe I am sharing this) Trying to find food that tastes good, is good for me and won’t make my insides uncomfortable is a challenge. Especially when the doctor tells you that all your comfort foods are the ones you need to eat less and the pain meds that you need and must take will continue to cause this problem. Luckily, I was able to find something to wear that fit and concealed my protruding stomach as I joined Julie and Paula at Dan and Kristen’s home.
What an amazing feeling it is to see how CaringOn was able to bring extra joy to Dan and Kristen. Kristen selected a gift of massage, haircut and lunch for Dan. Little did they know, we were able to get lunch provided by Nalley Fresh, which is one of Dan’s favorite restaurants, a little gift of bubbles for the kids, and someone to help Kristen with the kids while Dan was rejuvenating! As it turns out, after Dan’s “morning of beauty” they have an appointment with a specialist at Hopkins. So as you can see, Caregiver’s are always in constant motion for us. Which is why whatever time away they can have we hope to make it as meaningful and enjoyable as possible. And to let them know that we, the patients, are always thinking about them too and that how they are doing and feeling is always on our mind and in our hearts!
Coming back from my own time to rest gives my husband time to rest as well. I’m lucky that I am able to still travel, enjoy my kids, and grow CaringOn. While away I had new ideas to add to the long term plans/growth of CaringOn. The constant struggle that I have in addition to my health is to see that CaringOn continues to raise money and provide a way for patients to thank their caregiver and caregivers to accept and realize how important these gifts are for their loved ones to give. No matter what profession we are in or how many different hats we wear, it is a constant struggle to prioritize what needs to be addressed first, second and so on. For me, being faced with my mortality every moment of the day and the struggle to live life to the best of my ablilities as well as create something that I and my children can be proud of is something that I think about constantly. Trying to be present when involved in each and every activity that I am doing is also challenging. Imagine walking around with a time bomb attached to you and someone else has the ability to push the button. At times this is how I feel. Being an active listener and an active participant in what I am engaged in at that moment becomes slightly difficult, but so important. For me the importance is in making sure that the person or people I am with know that I care about them and that I am hearing and observing what is going on. Sharing my time with my family and creating CaringOn and taking time for myself is quite a juggling act. Yet, I know in my heart that by forming CaringOn, I have found away to control the hand that can push that button. But I am now living on my terms and know what it is that I need. That is my family, my friends and the ability to give back and surround myself with all that is good!
Keep on CaringOn-