It takes a village to survive cancer!

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.

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. ┬áHe 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.
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2 Responses to “It takes a village to survive cancer!”

  1. Sandy Hermanoff Says:

    Joanie, you are so brave and strong. The treatments are not fun, but, hey, they are working for you and they worked for me! Miss and love you.

  2. Suzanne Parks Says:

    Hi Joanie, Suzanne Parks here, Tracey Mosconi’s Mom, She emailed your blog to me cause I wanted to read it and also because I wanted to respond back to you.

    First of all I congratulate you in your positive attitude. I so believe in positiveness. I don’t know if Tracey shared with you that I used to be a practicing RN. In my heart and in experience I saw that your mind can be your best weapon when fighting illness and fighting all the negativity that our world constantly bombards us. I saw patients refusing to let diagnosis of doom and future doom dictate their future. Their decision in this gave them resolve and stubbornness dealing with symptoms whether it be the illness or the treatment. It was like you could let every cell in your body the healthy ones and the cancer ones know that you are in charge and they will respond. The healthy ones multiply and the bad ones shrink. I know it sounds wild and a utopia scene, but I did see it work. There was a oncologist here in Houston at St. Joseph’s Catholic Hospital who believed in this and refused to give any of his patients a doomsday future. He felt and believed there was always hope and believed in the body’s ability to heal and fight for itself. He knew that if a patient got even somewhat depressed or was feeling more pain than normal, that they were experiencing some negativity invading their thought process and impeding their progress. He would find out what that was that brought them down and help them do something about it.

    I sure you know that I am very Christian and when circumstances occur, I reach for that higher power to be with me. I am not trying to influence your beliefs but want you to know that that higher power is also a weapon of strength for you to fight . Picture him always standing right beside you cheering you on and trusting in his power. Even asking him to help you and give you that strength.

    From the sound of your experience in the chemo arena it is very easy to get distracted and out of focus. you mentioned going into the Zen space and that is a good place. for if you can picture the good cells overcoming the bad cells and that you are in a place of love and peace your body will respond. I worked in areas of Bio feed back and saw diabetic children taught how to have control over their blood sugar and also adults taught how to bring high blood pressure down all with the mind work wonders.

    I agree with Tracey that you also have an ability to write and communicate and this might be your gift given by God to help others.

    I am on a retreat team at my church and I have put your name out there for prayers for you and your present battle. There are 50 ladies on that team and we pray together and in our own way daily. So you have many prayer warriors. Again I have seen many miracles with prayer and I so believe in the power of prayer. We are all children of God, so that makes you my family too and I will fight for you and hope we can stay in communication.

    Sincerely

    Suzanne Parks

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