My new lessons learned are: it takes a village to survive cancer and know your history because your life depends on it! I am sure I realized this before, but I am often slapped in the face with the reality.
It takes a village to survive cancer!
Besides visiting the Hoag cancer center on Thursday for one more transfusion, I was trying to be in a zen moment. This was definitely difficult with the over crowded situation. It took me back to the days of the original UCLA chemo closet. I was surrounded by moaning, groaning, vomiting, and crying. Geez, I was just trying to pump myself up with blood. I kept on with my smiling face and my closet mate asked me what type of cancer I had. Of course, she was amazed since I never really look as bad as the story goes. She began to ask me about some of my tips and tricks. I realized she was another one who thought there were few options since she was limited by a doctors inability to think outside the box (well actually outside plan A and plan B). She hardly had any chemo regimen and was already repeating with the same drug. It didn’t make sense to her and I definitely would question that as well. I gave her my usual speech on who to talk to, what I took for nausea etc…I realized the blood was barely dripping. Of course, there was crying from next door and continued by apologies from the nurse. There was a crisis which was followed by a request to be silent. I definitely draw the line at silence. We are all in this closet hell fighting for our lives and silence was never part of the deal. Why not remove the crisis causing patient away from the closet instead of forcing a crowd to silence? I continued with my tips and tricks for chemo while she took notes. She left and I was stuck in silence with some moaning coming from the other side. This cancer center is definitely in need of an upgrade.
Friday was my scan day. I have to say that going to Hoag Irvine was like going to a class reunion. Besides my scan going without a hitch, I had a great technician who actually had the “hold the breath” timing down perfectly. It really makes a difference even though it sounds simple. I tried to not let my mind wander as I waited for my report. With my tumor marker approaching the highest point like in March of 2013, I am concerned with my symptoms, but try to ignore them at the same time. Once I received the report, I skimmed it and realized it was confusing to me. I was also concerned that it didn’t read correctly for the trial at UCLA. I decided to follow up on a favor with one radiologist at Hoag who said to call him if I ever had questions. Again, you have to try to reach out to anyone who will talk to you so that you really understand what is going on with your body. It is key to know your medical history, your body, your treatments, and understand how the cancer behaves. You can’t rely on anyone else to connect the dots for you. So,this radiologist went line by line reviewing and comparing old reports to this new report. I realized that as sad as it may sound that I am happy to have metastases in the abdomen with the ascites because none of this had infiltrated any of my abdominal organs like colon and liver which is common. Even stranger to say is that I have enough disease for the trial, but not too much to not be able to continue fighting. Again, there is always the risk/benefit analysis that is done. I had appreciated this time this radiologist took from his busy day. He even explained the pattern of what he sees in scans left untreated or unresponsive, so I understood the pattern of the disease clearly. He also commented that I am way too young to be dealing with this and he was happy to know that unlike most oncologists, we are proactively treating this cancer growth. He commented that many wait until the next scan reads that the cancer has spread to the bones and brain.After talking to him, I realized that I must talk to the doctor who read my scan from Friday. Through a lot of help from a friend at Hoag who treats everyone who walks in the door like some long lost family member, she asked the doctor from the darkness of reading room call me. He called and went line by line and I explained the requirements of the clinical study. He added an addendum to my scan. Again, I ask myself what the other people do. Granted it took the entire day to get this all done, but I was happy that my brain kicked into fake doctor mode and had the ability to get the information I needed. I also realize once again that it takes a village to survive cancer. Yes, family and friends are required along with your own personal NEGU cheer squad. It really takes the village of skilled hospital staff including lab workers, scan technicians, registration experts, all nurses at every medical facility, pharmacists, and each and every person who touches your medical records to help you survive cancer. Of course, they all don’t realize their gifts, so take time to thank them. Just a short email can go a log way or a simple, “thank you”. For example, the technician who took my last scan may have been able to get the most clear detail just due to his every days skills that he takes for granted. He may not realize his impact to your life. Even the phlebotomist who expertly draws your blood without even one mark. For me, the nurses everywhere I encounter make a huge difference. On the opposite end of the spectrum, there may be road blocks along the way. We refuse to accept “no” especially when it is completely illogical and especially when it is key to my survival. Of course, these paper pushers have no idea the “no” impacts your life and stress level. You have to look at the whole team and appreciate the value of what each person is contributing. They may not know that their efforts are keeping you motivated and alive. This all goes back to my message of kindness. A little bit of kindness and gratitude can go a long way. I am so grateful to my village each and every day. With the upcoming Monday to Friday treatment this week, I am going to find something fun to do today with my boys. I hope you find your fun moment and try focusing less on the silly stuff.