Knowledge is power and connecting the dots!

There is no one who knows your body better than you. If you have a hunch that something isn’t quite right, follow your gut. I always have said to ask questions and understand what you are taking. This applies to any and all medical issues. So, when my week started with hideously low counts, it was up to me to connect the dots. More chemo equals lower counts. You have to know the general side effects. Granted I usually end up with one not listed like growing hair on your teeth (just kidding). I had to explain what was going to be done at UCLA and connect the dots for not one nurse, but two. I laughed to myself at the little notebook I found that Alex used to use for his “Blues Clues” and wrote down the list of items needing a doctor order. We have to monitor my counts weekly or I could be the ticking time bomb on the weekend. There has to be a plan in place instead of the old method of treating things as they happen. I don’t have the luxury of time to play around and experiment. I come up with a plan along with Jim and ask the nurses to get the local doc to complete the plan. It took them hours of effort since I know I am not a priority for this doc. I also know that most oncologists are juggling their patients and giving attention to those who cry the loudest or those who need the most help.

This week I am reminded that there are other oncologists across the country and even around the world that don’t have the knowledge to think outside the box. Having chemo every day, I am faced with not only the reality of what cancer brings to the patient and his/her family, but that many are told too early that there are zero options left. Some of these patients have only had at most 3 standard protocol. My list is now 19 treatments. I give out my list like a goodie bag after a party. My hope is that these patients will NEGU and demand the treatment that I have been fortunate to get.
It is always important to say thank you to each member of your team. My honest discussion with the palliative nurse broke down the barriers I’ve been keeping for weeks if not months. She was able to provide specific advice for my concerns instead of just giving me “the line”. She completely understood what I do, why I do, and my goals. Her belief is that the mind is a powerful tool and that the key to living with a chronic illness especially cancer is to take control and keep control of your treatment. Once you give in to others making your decisions, the journey is over. I expressed my frustrations of living with cancer and without having much free time. She insisted that free time comes in all forms and it is important to value the moments. While my cancer continues to grow, the daily treatment is something I must tolerate especially when my oncologist said, “you have to do this.”  I sent an email of thanks to this nurse. She felt she did nothing, but I found that she had a magical way of dealing with the truth combined with ways of handling all these wretched side effects.
Another conversation was with the mixologist (pharmacist) who took the time to explain the science behind the toxic powerhouse I am getting on Tuesday. He had such a perfect way of explaining the true dangers of the drug to make his point of being hydrated is key to avoiding kidney damage. I keep telling you that if you reach out to people, they will surprise you. I’ve had some refusals over the 3 plus years, but most were eager to help in any way they could providing their expertise.
With my growing cancer comes the reminder of the days with my “lizard baby or alien baby” from another time. The continual discomfort which leads to perpetual pain is something that I keep putting aside in my mind. This is the only way to live my day to day. The ascites is a constant reminder along with my growing waistline. I try to focus on the present moment by talking to Alex or listening to his laughter or watching Alex and Jim play basketball. Seeing their smiles, I feel such joy that it seems to outweigh the discomfort. My week will begin with the blood tests followed by vitamin c infusion which helps with side effects and off to UCLA Tuesday morning very early for my day in UCLA’s closet. Minute by minute, hour by hour, I live for the moments which distract me from my cancer symptoms. I encourage you to thank the people who are often forgotten by the amazing job they do each and every day. I am extremely thankful for Alex’s teachers who are secret angels who watch over Alex every day and understand both his good and bad days. You can make a difference in a person’s life by just saying, “thank you” every once and a while. Few words go a long way. Find your sunshine. I WILL find mine.

One Response to “Knowledge is power and connecting the dots!”

  1. Lorena Says:

    Hi Joanie,
    Your writtings really help me. You are such a strong woman.
    I wish you all the best.
    Lorena xxx

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