Be the voice you want to hear

Tumor marker did not cooperate. The strategy remains the same. Remind the doctor that I am not the “average patient” and choose to try to out smart this disease. This ride is a dizzying effect like the merry go round that you want to stop spinning and you cannot quite catch your breath. Just when you feel like your feet have settled your body into the ground, the spinning continues. I hear my own voice speaking words of strength from a whisper to a scream. I hold back the tears. With each turn around the corner are the faces of the path of this disease and it’s destruction. The hallow faces with the spirit of these patients barely hearing their own voice. The sound I hear is not their own voice, but just whispers of air. I don’t recognize this whisper from the months before filled with laughter and joy. The voice has disappeared for the continuing fight. The words they say are the same, “I’m tired” and I remind myself not to use these same words. I visualize these faces and look in the mirror to see myself still present full of fight and strength. I know the path and I recognize the path, but I choose to do everything in my power to avoid the predictable path. The game to outwit my cancer continues. The calls begin, the emails start, the strategy sessions begin. My mind says slow down, but in the very quiet of my soul I hear a scream of “hurry before this cycle of craziness gets ahead.” Jim slowly explains with a calmness that I never can find for myself. He reviews the drug choices, the drugs I have tried, the data we have collected with every scan, every blood test. He allows me to make a decision, but often there is no perfect answer. I explain my feelings about what I want as we rehearse what the doc may say or guess what his response would be. We change my approach with less emotionalism and more science plus more facts.  I usually become frustrated and upset at the frequency at which we try to outwit this cancer. There is no clear path, but there is always the review of these drug combinations for quality of life. The goal is always first to get rid of the cancer and second be able to tolerate the chemo. The same question comes to mind, “why do I want to accept the stability of disease? while my symptoms increase, my quality of life declines?” Then, comes the real question, if all doctors have the goal of treatable cancer with the same end zone in mind, why not think of trying something else new? Why if there isn’t an exact science to this chemo roulette is the group mentality the best approach? Then, I realize the answer is that there are too many of us. For infusion centers to be “sold out” or overbooked, there is most likely never enough time with so many patients. I’m lucky to have my doc always willing to listen and hear my plan even though at first it sounds outrageous. He usually talks things out like we are colleagues instead of me being the patient. I’m sure it is strange to not go by what is the normal thing to do. I want my voice heard. I want to be the voice for those with me, before me, beside me who have lost their voice. I am not looking for just the stability of the cancer. I am now on the other side of constant pain, inability to eat, sleep, and go to the bathroom. Without constant pain, I can be more present. So, why would I want to spin the roulette wheel on drugs that are partially working? Let me try something new. Let me try. Isn’t it better to try this when I am strong?

 

Our conversation went well, but started with the usual suspects. I am not the average patient. I have reliable data. I track these cancer cells every move. I don’t wait any more for the cancer to grow out of control. He agreed with the idea and suggested something new based on all our ideas that Jim had researched. We know the toxicity of some drugs are worse than others. After all this dancing is over, we decided on two oral chemo drugs. Now the fun really begins.

First, I get a call based on one of my numerous attempts to fix some broken systems with just a request for basic communication. I am told that the lab issue (when the lab was down for maintenance after the labor day holiday) is brand new. They have never heard of any complaints from the cancer center. My first question was, “have you ever been to the cancer center?” Followed by, if not, you cannot understand that patients are fighting for their life every day. They put up with the frustration, lack of communication, and just chalk it up to the way things are. I am told the lab is very complex. Is it too complex to communicate a simple schedule of maintenance and just curious why the maintenance has to be done during the day. Oh, no nurse has ever complained. Again, my response is, “have you been to the cancer center, maybe a visit is just what you need.” Another comment was that the nurses at the cancer center do every thing in their power to help each and every cancer patient every second, every minute of their zillion hour shift. No, they don’t have time to “complain” about the lab. Why not just try communicating? How about an email? The voice on the end of the phone seems puzzled since they have never heard any complaints about the lab. I have to add that I have never in my 3 years of being treated been talked to with such lack of compassion, but I guess that is something that was addressed. Oh, by the way, I speak for all those patients who cannot, do not, and just are fighting every day to live. I mentioned that I fight every day too, so it isn’t necessary to call my doctor because he has a zillion patients. I am given a direct line for any future lab issues. Success? Who knows? My voice is heard.

 

The battle starts with the order for the new drugs. It seems like a ping pong match that is non stop. I call the doctor and the pharmacy (delivery for expensive meds), page the doctor, call the doctor, call the pharmacy, call the doctor, talk to the doctor, doctor phones the pharmacy, doctor calls me back, doctor calls the pharmacy again. This continues ALL day! My right eye is throbbing out of my head. I make one more call to confirm the delivery. Surprise! My meds will be delivered between the hours of 8am and noon. Yes, I told them it was chemo. Yes, I told them it wasn’t cable tv being fixed. Yes, I told them I had to take my first dose tomorrow morning. You know what they said. “You are lucky you are getting this tomorrow.” Oh, I sure am lucky to have cancer to beg for a drug, to spend the whole day free on the phone, and then I could maybe or maybe not get it by morning. I will wait just like I wait for the new sofa to be delivered only this is a drug that is supposed to stop my cancer growing. Good to know I am lucky I am getting it tomorrow. Good to know that I can laugh about it. My positive (even though UCLA is sad I am not visiting more for the treats that they were looking forward to) is that no drive tomorrow and no visit to see the visual path of destruction of the cancers. I will be at home. Of course, during my few free minutes, I read about the side effects and they do include hair loss. Oh well, guess I need some more tools for eyebrow drawing. I am concerned about the spontaneous bowel movements which will not work for me when I am walking along the beach. I am told not to worry since that only happens to a few percent. Of course, this includes the hoof and hand or hand and foot syndrome. Been there done that and I did get a tshirt in Greece! So, here I go again. I hear my voice in my head even though the thoughts are in the way back of my head. I shove them to an even further part of my head. I tell myself that I can do this. Another drug, another day. Tomorrow waiting at the door for my delivery seems far better than sitting on the 405.

 

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