“Hope is a powerfulul weapon and (one) no one power on earth can deprive you of.” Nelson Mandela

Wednesday was chemo camp day. I packed Jim and I a brown bag lunch ready to face another treatment. While I was trying to convince Jim that by now after all these treatments, we shouldn’t worry about things not going right, he was correct in his prediction as usual. With some last minute treats baked, I was hoping not to be placed among the vampires (blood transfusion). There is something gross about seeing all that blood especially when you are not getting some yourself. It affects your appetite even if you don’t have any. It worked and I had a room to myself. The saga began and I never understood why basic communication was not a key part of training in the world of cancer centers. We are a trapped audience awaiting a poison and some key components of compassion and care were missing. I wrote down the time of my arrival to my room. I was hoping that someone would tell me who my nurse was. No luck there. Unlike UCLA, you are on your own at Hoag unless you are contagious and get your own giant room. There really isn’t a place for a visitor. In past conversations with nurses there, they agreed that this is not a good set up. There are days when I can speak for myself, but other days which I was consumed by pain that I needed another brain and voice. The minutes passed and now we were in the 20 minutes without a nurse visit. I saw the nurses’ station from my cave and heard my name mentioned. I saw a nurse who was waving a paper around and stated she was concerned with starting my treatment since I didn’t have a room number assigned. Ugh. Guess no one cared that I was still sitting alone and waiting. Finally, the nurse appeared and opened my chart as if it was the first time seeing the information. I was thinking to myself that it would have made me feel more comfortable if she had reviewed this prior to entering the room (only she was concerned about my missing room number). The countdown began (I started calculating the time we had before Jim had to take Alex to his band workshop practice session in Mission Viejo) and I realized that the debate had to be over. This was the debate on what number cycle of treatment this was. I told the nurse it really didn’t matter since I would be on the treatment until it stopped working. There was no end date on the order for a reason. This was extremely confusing for her. She continued to start the counting again. I finally used my “mean voice” and told her we could figure this out later, but needed to run the blood test first. I thought about getting Jim but understood he has been on non-stop calls for work, so I began to deep breathe. I used the meditation breaths that I used with Alex and instead of his mantra, I kept saying, “I will get chemo, I will get chemo….” She finally agreed. Now, my chemo is a blood eating, cancer eating toxin. It eats all blood cells and there was no solution last time I was on this drug in 2011, but to get ongoing blood transfusions. I did my bone broth all last week (a coffee cup of broth one or two times a day). She returned with the results questioning them since it is a known fact about the blood and this chemo. My platelets went up 10 points and the rest only went down a few points. This was unheard of, but she wasn’t the nurse who believed in the bone broth idea, so I decided to not waste my energy and focused on getting the chemo. I explained the timing of my exit. Alex had to be on time and didn’t want to miss the band event. We had never seen him so excited about band. As he said, he learned more in one day than he did all year. (Thanks Valerie Robbins/Dan Robbins!) Then, it started with the next debate. Are you kidding me? The order for my chemo is a prescription. There is a reason one drug is first and yes, Jim could explain this reason, but he is working!  Was it really important for this nurse to understand instead of just giving me the friggin right drug first? She began to explain her understanding of the drug and the pharmacist understanding. I could have cared less and all this time I had been getting the drugs in the order as prescribed. So, I was confused about this argument. Was this making it easier for the nurse or pharmacist OR was it because it was something that she didn’t understand and was the type of nurse who had to know the facts before administering? Either way, follow the prescription…por favor! She didn’t give me the wrong drug first, but still had to tell me she was right based on her knowledge. I tossed out the charge nurse name to stop this debate. It almost worked. Then, we started again with the number of cycle debate. My meditation breathing began again. Yikes! I thought to myself does this have to be so difficult. I looked around the cave and felt confident in my ability to continue this countdown. Again, I did think, what happens to those who don’t have the strength? After the continued debate about the cycles ended, I got the correct chemo first. Jim sent me a text and I responded that I would be done in 20 minutes. My IV alarm started ringing indicating it was finished. Minutes passed and no nurse. Jim entered the nurse station to find 4 nurses who were sitting. He asked if someone could “unhook me”. One of my favorite nurses insisted that she could do this since my nurse was with a patient (probably debating another patient). At last I was free! The next days began the fatigue and nausea which I blocked out from the last time. Guess this was the way to go like childbirth. All side effects blocked out: the extreme pain in my legs (one drug), the nausea (both drugs), and the fatigue (both drugs). There are drugs for all, so I began my process. Now with my tumor marker going down a teeny bit, my request for one week off is accepted. My ability to tolerate these drugs long term has to be considered, so docs agreed to have one week off. Otherwise, the continued hit to my bone marrow would put me in a scary place. This one week off would give me the best chance of staying on the drugs as long as possible. Once again, being your own advocate is critical in living with cancer or any other ailment. I am now realizing again that without the constant pain of cancer growing, I am able to reflect upon feelings and gain new insight into living with cancer as it affects Alex, Jim and those who surround me. Time becomes even more valuable. I continue to seize each moment with less cancer with such drive and determination that I refuse to let anyone stop my desire to maximize every moment (of course, safety first until I see pulmonary doc on Friday).

Hope you are seizing the day and your moments!

Today is now. Make the most of your day!

 

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