Cancer is a word not a sentence!!

I was an employee of RPCI for10 years as a RN. I saw amazing physicians and dedicated nurses in those 10 years. I sadly had to return 7 years later with my father who was diagnosed with NSCLC adenocarcinoma stage IV. Because I knew people there I felt that RPCI was the way to go, no brainer. I assured them the best place for my father was RPCI. I should know I worked there. I was so hopeful and positive he would get the care he needed and was so badly pleading for.

 People were amazing. Patient intake.. Anne Desiderio,Chris Mann, Lisa Boris a nurse I worked with in the OR.. AMAZING!!!, Pain clinic.. Dr Deleon, Dr Biddle. Radiation oncology department team... Dr Warren and his PA Leayn. Dad had pain management and radiation started pretty quickly. Dad was set up for Chemo to start shortly after radiation but had a nutritional decline and became too weak for chemo so he was admitted to RPCI for a few days to get some further workup. Nursing care on 7W.. 2 amazing nurses Charlie Walter and Steve Crosby. ( Rough around the edges nurse, Gina, set a tone for confusion on the day of my dad's discharge that made things very frustrating for a moment), but Katie his discharge nurse was so kind and as thorough as she could be.

 Many Neuro and radiation oncology people came to see my dad during his stay to assess a possible Kyphoplasty or possible surgery for his T11 metastatic lesion and pain. Dr Alberrico, Dr Patil, Dr Berg and Dr Fabiamo, Dr Prasad from Kaleida all so nice and amazing. RPCI was right on top of things. Patient advocacy was sent in for a medical oncology change and they, as well as the physicians, were very caring and understanding. BUT nothing was really determined. My father had to gain momentum to get back to a better Zubrod status. My Father and Mother were confused and felt like he was being sent home with some answers, but more questions.

  My point to this topic is, as a nurse, I was trying to stay on top of all the information being presented to my father and I found there to be a deficiency. The hole/deficiency was that I could not comfortably go to one person and resource for a cohesive and complete picture. Physicians talked to family very thoroughly, but each person has their own understanding. I was elected, as the nurse in the family, to be the spokesperson.  I couldn't be there every minute of every day. Physicians would come and go with out enough warning. Many of his Physicians left their number for me and I was able to talk to them and they were very informative,but my understanding was that a Hospitalist was the "overseer" of my father's care while in RPCI. I left my number for the hospitalist, but never heard from him the 3 days my father was there. I spoke with him briefly a hour before discharge (after a bit of a struggle with nurse Gina) and he seemed overwhelmed but said he would stop up to talk with me, but unfortunately he was unable and left a script for my dad for a med I had asked him about for his horrible thrush. I thought the nurses would be able to help me put it all together, but they too were overwhelmed by all the visits from physicians and said because of the computerized charting it was hard to extract info.(???). I am on his HIPAA and I knew the password.(GINA!). I was not able to be there all the time because I work full time. My family relies on me heavily for information and help. I can not even imagine how overwhelming this must be for people who do not have a healthcare professional in the family, or family around them for that mater. It made me take a hard look at my own practice and the dynamics of health and illness issues. Just wondering how the healthcare field can somehow improve this for patients and family. I never gave it much thought until now, faced with my own family Cancer crisis.

 So we are home trying to get him more nutritionally and physically strong so his T11 cord compression/fracture can be addressed (hopefully) and put chemo back on the table. PT and nutrition are coming to help. I am so amazed how quickly things have changed from his initial diagnosis, which was at the end of March. At the beginning of this, which was just a month and half, ago my father was at his normal weight and pain was his only issue. Shocking how fast things can change.

 He has more support and care from family and the RPCI team and yet no real accomplishments, YET ( but we are on our way toward accomplishments).

 SOOOO I say cancer is a word not a sentence for 2 reasons. 1. Once you hear the WORD so much more comes after it, like a 600 page book of overwhelming information. Cancer is such a small part of the equation. Patient Care Coordination, Family dynamics, multi team and treatment approaches, personality of nursing staff and physicians, spiritual components, cultural components, egos, compassion, lack of compassion, emotions etc.....on and on.. 2. Cancer is a WORD but in my heart and mind not a SENTENCE (like an imprisonment or death sentence) I, as a daughter and a nurse, will fight with all I have mind, body and spirit for the life and care of my father and NEVER give up until GOD makes that choice for my father.  and I choose to praise JESUS for the miracles along the way. So for all and any who read this.. please pray for all who struggle with cancer and who treat those with cancer. Help them so they can be the best they can be. Give them the ability to stay focused on why they are in this field....to help in the HEALING of this complex dynamic disease. So somewhere the patient and the healthcare team can give and get hope in a dark fight!