Tuesday, September 27, 2011

Enjoy the journey!!

Thank you Ty for such a beautiful account of our journey so far. You not only have given a wonderful account of our days but a beautiful tribute to your dad,myself and our family!
So much has happen in a relatively short time,Rick has had two surgery's and spent from the 19th of August until the 16th of September in the hospital going from critical care to acute care to in patient rehab. we have spent each day and night together loving a lot , laughing a lot crying a little and loving and laughing some more! We have smuggled food into the hospital, snuggled in a way too small hospital bed and wheeled down to the cafeteria for a ice cream date. Not exactly what we were planning for our summer but none the less we are together having some great adventures.
Each day as we go to rehab and look around there are always those who we can see that are struggling more than we are. They are young, old, some have family support, some don't. We are so grateful to have such a wonderful support group!! Rick has gone from not being able to speak or eat solid food to being able to communicate and eat what ever he wants. He has gone from no use of this right side to walking with assistance and a cane. He is amazing!! We go to radiation five days a week  and to out patient re-had three to four times a week. Rick takes chemotherapy everyday. He is doing so well!! We are staying at my cousin house in Utah, she is truly an angel and we are so blessed to have not only the use of her home but to be able to spend time with her.
Last night we watched the movie 17 Miracles, what a wonderful movie! We all have our own handcarts to push and as long as we keep our faith in the Lord and our faith in our journey we will endure to the end, but as we endure we need to remember to enjoy!! There are always rainbows after rain and the sun after a long dark night, as we push up the hill remember there is another side to that long steep hill. ENJOY THE JOURNEY!!

Thursday, September 8, 2011

The Beginning

It’s pretty unclear when things started to change for my Dad and his brain, but it is clear that big changes started about 4-5 weeks ago. In July my Dad started seeing an endocrinologist to manage some deficiencies in the hormone production in his brain and other glands throughout his body. The doctor made some big changes to the medications that he was taking. Shortly after this, Dad said he was feeling great. He was rebounding from a long time of feeling exhausted and an overall feeling of being unwell. This lasted for about a week before things started to change.

At the beginning of the second week after the changes in his medications, Cindy started calling about Dad just not feeling or acting “right”. She told me he was feeling dizzy or tired. On certain occasions he would bounce out of it if he took a B12 shot or if he ate a small snack. Based on this, my thought processes lead to the fact that the changes in medications had increased his metabolism calling for higher amounts of “raw” materials to provide for routine living. But Dad continued with these changes.

It was that weekend that I got a phone call from Cindy. Cindy called to ask if I could think of any notable side effect of the new medications that would cause my Dad to not be able to talk. I wasn’t quite sure what she was talking about until she explained to me that he was having a hard time talking. She and my Dad had gone to Island Park to a cabin. My Dad was trying to tell a story to the others that they were with, but could not get it out. He would try to talk, but couldn’t get the words to form. He would then simply turn to Cindy and have her tell the rest of the story. Cindy explained this to me along with the fact that he didn’t want to go to the emergency department. She was also unsure as to whether he had any noticeable weakness to his body or if there was any facial drooping. You know, those sign of stroke that they teach in 1st Aid classes and what they had taught me in my emergency medicine courses. I told Cindy to tell Dad to call me when he came back in from fishing.

The phone rang about 30 minutes later. My Dad was on the other end of the line. It was immediately very clear that there was something wrong. When I tried to talk to him or ask him any questions, he struggled to form answers or to collect the words to express what he was trying to say. He used a lot of “um” and “well”. I resorted to asking yes and no questions so that he would be able to give me more information about what was going on. He didn’t think that he needed to go to the ER. I told him I thought he did, but to do what he thought was best for him. Then I asked to talk to Cindy. She got on the phone and I told her to go to the nearest ER in the least frantic way possible. I told her that they needed to image his brain. Inside my head I had figured that there were some significant problems. He definitely had something going on with the way his brain was working whether it was a stroke, recurrence of his previous brain bleed, cyst, tumor or other lesion/mass. They went.

My thoughts were racing about what this could possibly be. I was worrying about the worst case scenario, telling myself what I often tell my patients. “Let’s not worry until we have something to worry about”. We often say things in medicine to attempt to ease a patients mind when we are expecting the worst. I then received a phone call from Cindy that they were at the ER in Rexburg and that the Doctor had ordered a CT scan of his brain. She also gave me more insight into other symptoms that my Dad had that made me think more of the worst possible situation. This was that there was a mass in his brain affecting his abilities to communicate and perform regular daily activities, like walking. I told her to give me a call when they had results and if there were any other questions, the doctor could call me.

Cody then called. With emotion in his voice, he told me there was something on the scan. That there was a lesion Dad’s brain.  They still had to do the MRI of his brain, but they knew there was something. I hung up the phone. What was I supposed to do then? I was driving home from shopping when I called and made arrangements to go to where my Dad was. I knew that they would have to do surgery to completely diagnose what it was that my dad had. They would have to stick a needle in my dad’s brain to see if this was an abscess, cyst or actual tumor. Tumor. There is was. All my training did not prepare me for what I had to deal with then. I had sat in front of patients and told them that they had stage 4 breast cancer, that they had severe multiple sclerosis or that their colon cancer had progressed to an untreatable state. But I had always been on the “giving the news end” not the receiving. I could shut myself off emotionally in that case and still show some compassion, but now it’s personal. I couldn’t just put it aside when I went home at night. I would face this every day.

I found myself, with my family, on the way to Rexburg the next day. This is a 10 hour drive. I found myself working myself up about what this could possibly and then calming down with the coaxing of my wife. I felt myself getting more anxious about what I was going to see the closer we got to where he was. On the verge of a panic attack, we pulled into the middle exit of Rexburg. We drove the four blocks and parked in the drive way. There I sat for what felt like an hour. I pulled myself out of the car along with the kids. Cindy opened the door. I don’t know if it was fear, joy or relief that we were greeted with, but with tears Cindy wrapped her arms around all of us.

I would have never been able to prepare myself for seeing my Dad. There he was. With a slight droop to his smile, he too hugged me. I couldn’t let go. I knew there was something there, something different about him. I didn’t want to let go of who I know he is. He was quiet, not having a whole lot he could say, but had so much he wanted to say. He didn’t have to say much, his eyes spoke for him. I could see joy for having his family around him, fear for what was next, and frustration for not being able to explain the recent events or what he wanted to say, but what I saw most in his eyes was love, for all of us and especially for Cindy. Her support was clearly evident to the broken man that we all called Dad. I sat next to him on the couch. What do you say to your Dad when you know something is as serious as this is? I knew so much about what was going on and understood the possible outcomes. How much to you tell without causing despair? I just sat with him.

We all sat for the night just visiting. Much of what dad had to say was spoken through fragmented sentences and often interpreted by Cindy. The plan was that Dad would see the neurosurgeon at the beginning of the week. They had the disc with the images from the CT scan and the MRI. We loaded this up into the computer. Now I am not a radiologist and I won’t claim to be one, but I have seen plenty of normal scans and can see changes when they are very obvious.  I looked through my dad’s scans only to see exactly what was reported in the ER the day before. There in the center of his brain was the mass. This was a large lesion. I had seen these types of lesions in the past. It had characteristics that made me nervous, particularly that there was increased visibility to the walls of the mass with the contrast. I had researched “ring enhancing” lesions in school and had seen patients with these. None of the patients that I had worked with, with these types of lesions, did well. We went through the scans, where I was able to explain the areas that were being affected by swelling and the characteristics of the mass itself. Again I found myself becoming clinical, saying things that would comfort me in the wake of what I expected as bad news.

We spent the next two days spending time with Dad. We really didn’t know what was in store. We were all becoming frustrated because we needed to hear from the neurosurgeon.  On Tuesday evening we heard that Dad would be seen first thing the next morning.

We went through all the normal paperwork and questions that you have when you go to the doctor’s office. They asked the history of how the mass presented and what he was now experiencing. Dr. Greenwald came into the room. He then asked for a recount of the last few days and the last few months. Dad struggled. His verbal symptoms increased with the interview. Cindy then filled in to give a more complete history. The doctor then reviewed the scans. He took a while to analyze the scans thoroughly. The physical exam showed significant deficiencies in his nervous functions. All signs that we were warned about in school, all signs that we were to watch for. The doctor then explained that there was a strong need to get a biopsy of the lesion. This was the only way to know exactly what this was. We were sent away to eat some breakfast and then come back for surgical preparation. We had less than an hour. We sat for a couple of minutes there in the office. The reality of this was setting in. The possibility that this was a tumor was becoming more of a reality. It was then, with that realization that fear set in. Dad, Cindy and I went down the street to a small diner where we had breakfast, made some phone calls and then headed back to the office. The nurse put markers on dad’s head to guide where they were to put the needles for the biopsy. We then went across the street for dad to be admitted to the hospital.

We waited all day. Many people came to visit. Around 6:30 Dad went down for a repeat MRI of his head to allow for the mapping of the brain for surgery. About two hours later they took him for prepping and the surgery started. The family including one of my dad’s sisters and her family waited in the surgical waiting room. We could only wonder what was going on during dad’s operation. Throughout the entire experience there were countless phone calls offering support or asking for updates. The surgery was one time when the calls didn’t stop. People wanted to know what was going on or what was next for my dad. We waited for about 2 hours until Dr. Greenwald came in to tell us that dad had made it through the procedure fine.

He then explained that he knew now that this was not a cyst or abscess. He said that on his examination of the biopsy there were signs that strongly suggested malignancy. As far as he could tell this was cancer. The mass was a tumor. He expressed his sympathy and explained that the results will be confirmed with the analysis of the biopsy. He said he would have dad in the hospital overnight, but that he would probably go home the next day. He would send the oncologist in the next day to talk about care plan options. He then left. I chased him down in the hall because his explanation wasn’t clear enough for me. I asked what type of characteristics the tumor had that made him think it was a malignancy. He used words like “central necrosis” and “hypercellularity”. I then asked if he thought this was a “Glio” versus an astrocytoma. He then said that it was glioblastoma that he was most afraid of for this situation, but he didn’t know until the results came back.

In the waiting room my family waited. There was so much to explain, but how could I explain what I thought this was. I had spent so much time convincing myself that this wasn’t cancer, but in fact that is exactly what it was. Cancer. I tried to explain to everyone, but nothing seemed to make sense when I tried to talk about it. The pieces to this puzzle didn’t make sense. I was confused. I had held it all together until I had to explain to my dad’s other sister that this was cancer. I called and explained to my older brothers what the doctor had said to me. It was then time for all of us to rally behind my dad to help him through this.

The next day everyone was there. All four of us boys and Brittany were there to help support Cindy and Dad. We wanted to spend as much time with him as we could. The reality of this was now sinking in. The road that my dad was going to walk was a long one. But he could rest assured that he would not walk it alone. He had his family, notably Cindy to walk with him through the journey of cancer.

There has been plenty of time to ponder these events. There have been clear miracles seen as a result of this situation. I have had time to realize the outpouring of love from those around us. People that have never met my dad have commented to me that they have prayed for him and my family. People that I work with constantly ask how he is, how Cindy is and how the rest of the family is holding up. I have come to know more about myself and my relationship with my dad in the last three weeks, even though his speech is somewhat hindered. The greatest miracle that I have seen yet, in this situation, has been the love of the Savior touching the lives of those who have heard of my dad’s journey through cancer. People inherently want the best for him and Cindy. And so we will fight. If there is someone who can bounce back from this is my dad, and with the support of his beloved Cindy he will make it through this. We will fight this until it is gone.