Trials and tribulations

I always say that I wonder about the rest of the cancer patients. Either those who are not organized or those who have not made cancer a job (not by choice). In case anyone was wondering, I now work at Scripps. It was confirmed today by a call from a doctor in error.  Oh, just call Joanie and she will point you in the right direction. I guess I should have gotten a clue when they ordered the wrong scan. Now, this is the case of the “you are not a priority” because we gotcha! You are trapped! We got the goods and you want them. So, you may be in the fight for your life, but we are busy and have bigger priorities like looking at some petri dishes of cells. Is this the life of a cancer patient in a trial? My appointments were rescheduled 3 times and I have now told them that I will shake a hand tomorrow and then, I am off. I used to think of UCLA as a factory and joked that unless you are bleeding out your eyes or taking your last breath, you are not the priority. I have learned my lesson now. At UCLA, they do understand the life of a cancer patient. You just don’t cancel without another appointment lined up and you try to understand from the patient’s perspective. Come on…do I want to drive to La Jolla at 5pm? Child care, who cares, you are in a trial, so come and get it. Luckily, I sent my email to confirm my appointment for tomorrow with location, suite, time. I am glad that I work there now since my benefits are that I get the drug from the trial. There are no assumptions. I cannot let my guard down and must triple check everything. Sorry, but I don’t have any faith in the organizational skills of the paper pushers who are holding a key to my future treatment. This is why I will continue my trek to UCLA while I am in the trial. Should I be concerned that my last phone call from Scripps included a list of contact names with numbers of the boss of the boss of the boss?  I guess I am covered.

All in all, this is a strange place to be without my toxic chemo. I can almost taste my food even though some foods still taste strange. It is incredible that my hair is still not staying “in”. It is not a rainfall of hair as it really wants to stay, but a slight shower. Geez, toxic or what? I cannot explain how much better I feel without the “drugged” feeling. It is the feeling like you never get enough sleep or had much too much to drink on a daily basis. Guess it could be a chemo hangover. I still need naps and still am missing my boundless energy source. I get my short bursts of energy when I can go to Costco or the grocery. I even have walked Alex to school. Of course, too bad so sad that he is now embarrassed if I say goodbye. I just enjoy taking deep breaths of the almost ocean air by our house. (okay, more canyon air than ocean) I even had a mini date with Jim and we ate watching the sunset. We even went for a walk and saw the moon reflecting on the ocean which looked so incredible that it seemed like a backdrop for a movie. I am still about taking advantage of every moment when I feel good because I still have my days as most everyone does. I just appreciate the good moments even more! Wishing for good dreams and no traffic for tomorrow!

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One Response to “Trials and tribulations”

  1. margie Says:

    Hang in there Joanie…cancer is like having a full time job with no pay or benefits!

    I still wander what people do who don’t have any energy to deal with all the appts, billing and treatment side effects. This has been something I’ve pondered over the past 8 years of my journey through the system when I had no energy or family living here. It’s like a maze, don’t you think? You’re in my prayers and thoughts always. Sending you my love! Margie

    P.S. In case no one has told you, it’s normal to feel tired or fatigued for awhile after chemo…it takes time for the body to come back, so listen to your body when you need to take a nap!

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