Look down: the kitchen is a dangerous place even without the sharp objects

Note to self, when you are a cancer patient look down where you step because one wrong move you can end up wiping out in your own kitchen. If you decide to wipe out, don’t do it before you are going for an initial visit for a clinical trial. Somehow, I slipped on a piece of plastic, into the oven door, flat on the floor. Blood was dripping down my face and I screamed for Alex who was playing basketball. He came with his friend and both remained calm even though they really wanted an ambulance to come. Thanks to a call to his mom who ran to my house with her hubby, all was assessed and evaluated. We all decided that if I was “normal” maybe we would just use liquid bandaid. Since I have the ole’ special immune system plus all the other issues, it is best to go to the ER. It is nice to have friends in high places who can get you into a room away from the germs in the ER. Poor Jim was called by Alex who told him, “mom fell down, hit her head, blood is everywhere, come home now.” Luckily, we called Jim back after I was iced up, but his heart palpitations continued when he saw my purple swollen face. We all went to the ER where the doc said glue is better than stitches when the skin comes together perfectly. Another adventure outside of days of isolation.
My time of isolation ended to realize that I am in a strange place of time without chemo not by choice and cancer growth continuing. Both things, I cannot do anything about, so I have to enjoy my days as much as possible. With the continual rise of the tumor marker, comes increasing a symptoms from cancer growth. Some symptoms are more glaring than others. Without the ongoing toxicity of chemo, my head seems clearer (able to answer Alex’s questions with somewhat clear mind), but the constant reminder with increased symptoms is difficult to put in the back of my mind. Instead when I awake each morning, I tell myself I am as good as yesterday to do things I want to do and ignore as much of the symptoms as possible. The last reading of the tumor marker put things into a tailspin as a scan had to be scheduled. This was all in an effort to enter the phase 1 clinical trial land as opposed to the wheel of fortune chemo adventure land.   As much as we fake being a doctor, a clinical trial has it’s own language and it helps that my oncologist can speak that language as he has performed countless trials and recently presented results at ASCO in Chicago. So, his involvement was not only necessary but critical. From the moment my scan was done, he was involved so much that he even began to converse with me via text and email with a furious pace that the urgency was felt unlike ever before. He also had his usual sense of calm and reassurance that this opportunity was one that I couldn’t miss. We are again in a different phase that I could never have imagined. I cannot be worried or skeptical or even be upset because this is what I have to deal with. I have to accept what it is for the moment. Is it ideal? Nope.
So, the unfortunate thing of the trial is that it is in Santa Monica which is like Laguna Beach in the summer for parking. After driving 2 hours, then we have the lucky time of finding a spot with a meter for more than 1 hour as we all know that any doc visit can be 2 to 4 hours. We haven’t fully evaluated the entire facility. I have been going to UCLA Westwood for over 4 years, so it is my “home away from home”. Santa Monica is the land of clinical trials and many are phase 1 which does mean for many more than being  a guinea pig. I was one of the few walking into the office. Many had walkers and many had wheelchairs. These faces were beyond anything I have ever seen at chemo. There were some with their own oxygen and many bald women with sunken faces. I tried to ignore the images and ask about important things like where do you get food here. I guess it was a strange question given the audience in this closet. You see if you are on a phase 1 trial, then they need to measure your blood almost every hour for 9 hours. The positive is that this closet has full bright open windows and I heard you can see the ocean.  Another positive is that despite the weekly visits to Santa Monica (we think for only 5 weeks), the drugs are pills. I am queen of managing side effects, so I plan to do the same here to have the FREEDOM from the IV. All in all between my face injury and the day at Santa Monica I am wiped out. Last positive is that until these pills are started, my blood is in the somewhat safe zone. I referred to my blood counts as rock star counts to the clinical trial doc and I think (I know) he thought I was crazy. Hey, once you have hit the zero zone of having no ANC to fight infection, you learn to appreciate the upswing even if it isn’t in the normal range.
I am making the most of each day and always finding my sunshine. I am so thankful to be out of my isolation running into some smiling faces that I have missed seeing for too long! Make the most of your day…summer is almost here, enjoy the late nights full of light!



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