Coming Home

I was finally released from the hospital Saturday night, February 16 at roughly 11:00pm. I was never so glad to get home. We had a houseful-Kristi and Greg, Joey, mom and dad, and of course my devastated husband. We quickly called it a night as we were all so emotionally drained. As Den and I crawled into bed, the last thing we could do was sleep. We ended up talking, hugging, crying, and planning until 3:00am about what our future holds. It was an emotional night as this was the first time we had been by ourselves since the start of this ordeal and we were able to share our true feelings. I love you Den with all my heart and always will.

The emotions and grief felt the next morning were overwhelming. My thoughts about what the future held were swirling in my head. What do I do? So many questions and no answers. Do I do chemo, do I let nature take its course? The thought of hospice crossed my mind. I had lived a good life and was not afraid to die. My first initial choice was hospice so that I would be comfortable and that my family would have the support that it needed. I had talked to Dennis about this and he was “ok” with this if it was what I really wanted. I remember talking to my mom and dad that morning and letting them know what I was thinking about. My mom was supportive, my dad crumbled. I then received a call from my physician just checking on me. I told him what I was thinking and he questioned me on this. “You are young, otherwise healthy, and have a husband who loves you dearly, and young children who are at exciting times of their lives. Think about this. I would encourage you to sit down with your family and discuss your options. They need to be a part of this.” We then received a phone call from my sister-in-law who was just “checking in”. She talked to Den first and shared with him how she had lost her mother to cancer at the time when she was 24 years of age. How she missed her mom dearly growing up. This happens to be the same age as our daughter Kristi. She then shared with me some personal success stories of some her closest friends who had gone through similar experiences as mine, successfully. I have to say, these two phone calls changed my mind and I sat down with my family and shared with them my change of thought. They were overjoyed, excited and so supportive. It was another tearful moment. From this point, the fight was on.  

Monday morning, I had a quick follow-up appointment with my surgeon who had inserted my port-a-cath late Saturday night in preparation for my first chemotherapy on Tuesday, February 19. It was a quick visit and he seemed to be pleased with the way it was healing. I was relieved that I wouldn’t have to get stuck each time for blood draws and my chemo treatments.

Tuesday morning came quickly. I was scheduled for a follow-up chest x-ray and echocardiogram as I continued to be quite short of breath. The echo showed no significant increase in the pericardial effusion, however, the CXR did show an increasing pleural effusion which, unfortunately, needed to be drained before the chemo got started. This time I was more prepared and they only drained a liter instead of 1400cc. Kristi was with me and such a great support during the procedure.

Chemo came next at the Infusion Center at EIRMC on the 2^nd floor. My good buddy was working that day, so she put me at ease. Everything seemed to go smoothly, easy access through the port. Some of my friends and employees came to see me which made the time pass quickly. Den and Kristi were there offering me reassurance and making sure that I didn’t need anything. Love them. Total infusion time was about 3 hours. I was able to walk out of there on my own.

The next day, I was scheduled to go back in for a Neuplasta injection which is administered to boost my bone marrow production. I was quite puffy and had retained lots of fluid, 15 pounds in all. My blood pressure was up which raised some concern with the nurses at the Infusion Center. They sent me over to my oncologist for him to take a look at me. He wasn’t too worried and reassured me that this should resolve over the next couple of days, which it did. Thank goodness - I felt like a human blow fish!

After visiting with my oncologist and he told me that one of the chemo agents would make me lose my hair, I decided it would be best to get my hair cut now, so when it started to come out, it wouldn’t be so devastating. I made an appointment and came out with a very short style. It took a bit to get used to, kind of a Halle Berry look but without all the curls. I had a pleasant surprise while sitting in the chair. I had my glasses off of course, so couldn’t see very well. From a distance, I saw two figures walking up with man voices. To my surprise, it was my husband and brother who had just flown in from California to surprise me. It was a very pleasant surprise and I was so glad to see him. Love my brother! He stayed just a few days and had quite a story to tell going home as a storm rolled in and he missed his connecting flight home. He decided to rent a car and finally….made it home safely.

The next few days were kind of long and drawn out. I didn’t feel real great, carrying around the extra weight, slightly nauseous, and achy. Den, mom and dad were here, along with Kristi. Greg had gone back to Livingston as he needed to get back to work. It was nice to have family around to help out, but it was so hard for them to see me going through this. I felt bad but of course couldn’t help it. We decided it would be best if dad went back to California to try and get some normalcy in life. Joey did the same thing. I think it helped.

That night, I remember having a very vivid dream about PAC MAN invading my body and going through eating all the malignant cells. It was so real and I slept so well that night. I do believe in the power of visualization and, if that wasn’t a perfect example, I don’t know what is. GO PAC MAN!!!!! The nights seem to be the hardest this first week home as you lie there in bed thinking about what the future holds.

I will close this posting with thanks, gratitude, and appreciation for all the support, love, gifts, prayers, and well wishes that I have received from my family, physicians, friends, neighbors, co-workers, and employees. Without your support, I wouldn’t be where I am today. You all mean the world to me and I’m most grateful to all.

The Unexpected Diagnosis

Kristi and Greg's Wedding-September 2012

Two days had gone by after my visit to the clinic and confirmation that I had a large left pleural effusion. This certainly was not normal and an obvious concern to me. I had blood work done that same day that incidentally came back completely normal. This alleviated some of those anxious feelings that had surfaced. After working a normal day, at work on February 13, 2013, I registered to have this outpatient thoracentesis done. What I was about to experience never ever crossed my mind.

The procedure itself took about 40 minutes. I sat on the edge of the gurney, and the radiologist inserted a small catheter in between the lining of my left lung that had collected all this fluid and completely collapsed my lung, hence why I was getting so short of breath. This small catheter was then connected to suction where they ended up draining 1400cc's of fluid. This equated to about 1 1/2 gallons. To put this into perspective, think of a gallon of milk and then half that again. No wonder I couldn't breathe! They warned me that as the lung was re-expanding, I would want to cough and have some discomfort. What they didn't tell me was that I would have excruciating pain which I put on the same pedestal as giving birth.

Post procedure, my physician wanted me to have a CT of the chest to confirm that they had drained most of the fluid off. I remember they had difficulty starting my IV and I ended up having to get poked several times. Part of the problem was I continued to have excruciating pain that was not being controlled. Once the IV got in, I was able to have some pain medication which at least made it tolerable. Once the CT was competed and read, the radiologist confirmed that the left pleural effusion had greatly been reduced. They also identified an area of consolidation in the left lower lung and discovered that I had a large pericardial effusion (fluid surrounding my heart) which had been masked on the previous chest x-ray due to the pleural effusion. Certainly, this was not normal and brought great concern to the physicians. That night, between the continued pain, the area of consolidation and the large effusion, Dennis, myself and my physician thought it would be best if I was admitted to the hospital for additional testing and pain control.

Late that night, I was admitted as an inpatient on the Cardiac Care floor of Eastern Idaho Regional Medical Center where I had been employed for the last 21 years. It gave me comfort that I knew the nurses and physicians so well. My parents received a call that night from my physician giving them a heads up of what was going on. I reassured them that they did not need to come! That night, my Patient Controlled Anesthesia (PCA) and I became best  friends! Once I was able to self-administer several doses of pain medicine, my pain level certainly became tolerable. All of this happened right through the dinner hour and I remember getting to my room and being so hungry. My sweet husband asked me what I wanted and he came back with a BIG MAC, fries, coke, and ... an apple pie. I remember how good that tasted.

The next morning, Valentine's Day, was filled with test and more test. An echocardiogram confirmed a large global peri-cardial effusion, a total of about 600cc of fluid surrounding my heart. Again, this explains the shortness of breath and the pounding of my heart. An EKG was done and more lab work. I had decreased breath sounds in the left lower base where the area of consolidation was identified. Pulmonary Rehab was ordered and got me up in the hallway. They monitored my O2 saturations and blood pressure to make sure that the sat's were not to low and the blood pressure was not getting too high with this fluid accumulation. An incentive spirometer was ordered for me to use every hour to keep my lungs well inflated. My physician told me this would be my new "best friend." Joey came up that afternoon from Pocatello and spent the afternoon with us. Both my attending physician and cardiologist visited later that day and felt that this was something viral that had set in my lungs and heart. Everything else so far had come back "negative."

Friday morning my physician came to see me. He was planning on sending me home later that day as all test had come back negative, so far, although they were still waiting on a RA (rheumatoid arthritis) test. I was to have a follow up echocardiogram and CXR on Tuesday, February 19 to check on the fluid levels both in the lung and around the heart. He felt that this was still a viral infection and we weren't doing anything in the hospital that we couldn't do at home. He asked me where I wanted my prescriptions called in to and they took my IV out. I was so excited to be going home. My own house, my own bed and pillow, and to be with my hubby and pets again. Yeah!!!! I had talked to my mom and dad and they were leaving that afternoon to come up and help Den and I out at home. I was excited to see them as well.

I called Den after lunch and wondered what time he wanted to come pick me up. He asked me if I had talked to my physician and I said "yes" early this morning and that everything had come back "negative" and that I could come home. Den then asked me if I had talked to him about the fluid and I said "no, I don't know what you're talking about." He knew at that point I was not aware of the cytology finding. What I didn't know was that that my physician had called Den first giving him and Joey a heads up that the fluid cytology was not good and that it showed malignant cells. Den then said to me,"oh never mind, I will just talk to you when I get there." I didn't think much about it.

Right after I hung up the phone, my physician walked in. He was by himself and had this look on his face. He sat down on the bed beside me, took my hand, and told me the horrific news. I was stunned. He was stunned. We were both speechless and cried together. I couldn't believe I was being told I had cancer, of all people. He stayed with me until I could control myself. I thought, "How could this be?" I was numb, angry, "why me?" He asked if I would like him to call my parents who were about 2 1/2 hours into their journey of driving up here. I said "yes" as I was in no position to talk to them. I called my friend at work who came and sat with me until Den and Joey arrived. The news traveled fast. Needless to say, my discharge was cancelled. The IV got put back in. Individuals came to offer their condolences and I didn't even know what kind of cancer I had. Further cytology studies were being done and it was all so confusing. Den and Joey came and we sat on the bed and just cried. Why, why why??? We had very little time to ourselves. Everyone meant well but we just needed some time to process the horrific news we were just told.

After further studies, the pathologist was able to confirm that my primary cancer was from the lung itself. We all sat there in dismay...primary lung cancer??? Are you kidding...I had never smoked a day in my life. This couldn't be happening. I was told that an oncology (cancer) physician would be coming by later this evening to introduce himself. Joey had contacted Kristi and Greg and they were planning on coming down that evening after work, hoping to arrive by 8:30 or so. That afternoon and into the evening, I had additional x-rays ruling out further spreading of this crap. CT scans of the chest, abdomen, pelvis. Mom and dad arrived in the middle of this. They were just as confused and horrified as we all were. The physician briefly popped in and said he would be back Saturday morning to give us the specifics. Kristi and Greg arrived as he was leaving. Talk about a whirlwind. I began to take notes and wrote down questions to ask in preperations for Saturday's meeting.

Saturday morning, February 16-the Oncologist arrived. Den, Kelli, Joey, Kristi and Greg were in the room. Den and Kristi stayed. Mom, dad, Kelli and Joe waited in my office. He didn't hold back any words and told us like it was: Non-Small Cell Adenocarcinoma - Stage IV with metastasis. Augh!!! Not good words. Pretty scary in fact. We got our questions answered and asked if he wouldn't mind going down and talking to Joey, mom, dad and Kelli, which he gladly did. That afternoon, more test and all I could think about was getting out of there and back home. The plan from the oncologist was to start chemo on Tuesday, therefore they wanted to have a port-a-cath (IV access) placed before going home. This was a surgical procedure and required me to have had nothing by mouth for 6 hours. This put me going to surgery at 8:00pm that night which my surgeon was happy to do, just so I could go home. Can't say enough good things about my physicians. They were wonderful and still are. For this, I'm most grateful. I was finally was able to go home, around 10:30pm that night.

My son Joey and my post diagnosis haircut. 

My pre-diagnosis

To the best of my recollection, I remember having a cough, cold-like symptoms, and chest tightness the day I took my ACM Certification test in Salt Lake City, back on December 6, 2012. I passed the test successfully and equated this tightness in the chest from the stress and the excitement of passing the exam. Throughout the month of December, I continued off and on having these same symptoms, but so was everyone else. After all, we were in the middle of flu season.

During the Christmas holiday and into January, I felt pretty good although the cold symptoms continued-ear pressure, sinus, occasional cough and continued chest tightness. I decided to go see Terry Thompson, NP at the clinic. After a thorough assessment, she too, thought is was an upper respiratory infection, just like everyone else was having. She prescribed 10 days worth of antibiotics and an inhaler to try to open up the airways. I was sure I would get better after this.

Weeks passed and I just wasn't throwing this crap. The weekend of February 8, Bill, Kelli and I decided to drive up to Livingston, Montana to spend the weekend with Kristi and Greg. We thought it would be fun to have a girl's weekend, afterall it was Paulette's birthday and her mom was up as well. The boy's were going to go snow shoeing. We made reservations to stay at the Murray Hotel. We checked in and our room was on the 4th floor. I remember walking up the 4 flights of stairs thinking to myself, "I can't breathe-what is wrong with me?" I was so short of breathe and I could feel my heart racing. I recovered quickly and soon forgot how short of breath I was.

We had a great weekend soaking at Chico Hot Springs with the girls and had a yummy lunch in the bar. We also went and looked at a house that Kristi and Greg were interested in buying. It was an old house built in 1910 and was one of the original houses that was rented out to railroad workers in the early 1900's. We all fell in love with this house and it was quite apparent that this was the house that they one day hoped to own.

The weekend quickly came to an end and we headed home. In the back of my mind, I kept asking myself, "why can't I breathe and why is my heart pounding so hard, with the least amount of exertion." I was worried and knew that I needed to go back in and have someone re-evaluate what was going on. I told myself I would go in Monday morning and see Ann Gruwell, NP at EIRMC's new H2U clinic.

Monday morning, February 11 came around quickly and I was anxious to get in to see what she thought. No appointment needed-they were able to take me straight back. Anna did a thorough assessment and found that I had decreased lung sounds in the base of my left lung. This was a concern to her so she ordered a CXR and some blood work. The blood work was all completely normal which was an instant relief to me. The CXR was a different story. I remember coming back from lunch and having a message from Anna saying that she needed to talk to me about the CXR results. I knew by her voice that this must have showed something. I met up with her that afternoon and she shared with me that I had a large left pleural effusion in the left lung. It was a surprise to both of us and an obvious concern. Anna scheduled a thoracentesis, a procedure to have this fluid drained. The earliest this could be done was on Wednesday, February 13, 2013. What was to come would shock us all....