Back to emergency room (part 2)

Sat Oct 11th By night time, I couldn’t take it anymore and felt like I was again unable to make it through the night. Due to the comments the doctor made from the last one (“if you hadn’t come in you would not have made it through the night”) I was not going to take any chances and I really felt that it was a strong prompting from the Lord to go back. I actually had been being prompted all day but it takes me longer than some to recognize the spirit sometimes. They decided at the E.R. that I was bad enough and dehydrated enough to warrant checking me in again. This time it (the check in) was much more controlled but still not fun. I did feel a little better about being monitored by their equipment. Somewhere through the night I mentioned to the nurse that I had started having a little bit of a hard time emptying my bladder. I had not had any real pain per se, but I had start going to the bathroom a lot more often and when I went it didn’t seem like I was getting as much out. She picked up on that and had them come up and check me out. After a couple trial “bladder emptyings”, they concluded something was wrong and needed to do a catheter sooner than later (even though it was in the middle of the night). It was very miserable (my first one but eventually I end up with several more) and they had a hard time getting it in (won’t ever forget that). Once it was in, they drained over 800 ml of fluid in just a few minutes. So again I realized that the Lord was helping me with another miracle. I don’t know if it would be as “fatal” of an issue but technically if we had not taken care of it, it could have been very bad for me and Julie would never have know what to do at home.

Maybe I shouldn't have gone home?

Fri. Oct. 10th Spent most of the day throwing up and trying to just survive. I couldn’t eat anything so eventually it was just dry heaves but I was going downhill fast. It seemed to be worse as well when I would take the medication for the pain.

Going home from hospital (part 1)

Thurs. Oct 9th Through all this Dr. Te had been working with me to try and get me out of the hospital as soon as I was ready but I think I pushed him to let me go earlier than was prudent. Today they sent me home to try it out. They spent a long time going over everything with Julie and I am so glad she was there because there was so much happening that I would never have remembered anything and she wrote everything she could down and took notes all the time. The most important thing to them was to try and allow me to control my medication as necessary. In other words they wanted me to try and relieve the pain as much as possible but not OD or anything so Julie had to become an expert on several types of pain medications in order for them to let me go home. I thought I was good before with a couple of hydrocodone pills before. They gave me a fentinil patch which is just a patch you put on like trying to quit smoking but it time releases some good drugs (generic morpheine) into you slowly for pain. Works real good for the most part but occasionally the pain really flares up and the patch isn’t enough so they also gave me some generic morphine in liquid form to start with and then we work off it as the pain got less from surgery and everything. Then I had several other pain medication options and about 10 different pills for (it seemed like) everything under the sun.

Temple recommend dilema

Note: not sure of the date exactly but somewhere through here I realized in talking with Josh that my Temple recommend had expired in Aug. I thought that it had expired in Nov so I wasn’t worried but when I realized the mistake, I wondered how we were going to do this. My records were in the Rapid City Ward and I needed to visit with the Bishop here. We called Bishop Hurst from the “hearing ward’ here in St. George and he said he would get working on it.

Getting set up for radiation

Wed Oct 8th Today we started radiation on my lower back. The hospital transported me to the radiation clinic (at the old hospital) and met with Dr. Richards. After some consultation and education for Julie and I, they took me back into a room where they had me lie down on a table (like a CT scan table). They used some high powered targeting laser type devices to paint a target (they called it a tattoo) on my stomach. They said they would use it to target the radiation every time I came in. When they laid me flat on the table to do the tattoo, I guess I had some fluid in my lungs, and when it pushed up against my lungs, I had a panic attack (remembering that feeling from before of suffocating) and sat up panicking twice. We finally found a way that they could fit me in the machine (just barely) if I propped up a little so it didn’t push up against my lungs. It really scared me though, and I learned just how real and scary a “panic attack” can be. We were going to do radiation every weekday for 15 days. They felt that there was a good chance that it could really help me, but they wanted to start right away if it was going help before the wedding.

Chest drain

Tues Oct 7th Dr Woodbury monitored me after the surgery and said everything looked good, but he was still concerned about my need to drain the lung area regularly. He had put a temporary tube in place to drain the heart and lung, but now he talked to us about putting a “semi-permanent” tube into the lung cavity so that we could drain the lung ourselves at home, instead of making multiple trips to the hospital. Later that day, they took me back into surgery and did the procedure. This wasn’t nearly as bad as my earlier surgery, and recovery was much easier. I do remember going down for this one although they did put me out for a while. So now I have a little tube with a cap on it hanging out of the left side of my chest (about 6 inches below the arm pit). It has been working very well, but they did caution that that area was critical to monitor closely because I could not afford to get an infection. Some of my guys from St. George City came to visit me at the hospital. It was great to see them.

Radiation ?

Mon Oct. 6th I spent most of this day recovering from surgery. People were coming in my room all day, testing everything they could think of, but I was still coming out of the drugs and this day is a bit of a blur. I know that Julie was there whenever I needed her, and I really appreciated her for that because I was starting to really need her support, as I realized more and more how bad off I was. We kept reminding the doctors and nurses that the target date was Josh’s wedding and they had to get me better enough for that. Dr. Te decided to have a Dr. Richards come talk to me about possibly doing some radiation to help with the pain in my back. I agreed to that right away. Dr. Richards seemed like a great guy and I found out he is in the Stake Presidency in his stake. Glad to have the Lord’s hand directing this one too.

Checked in to hospital Day 1

Sun Oct 5th Dr. Woodbury called Julie about 4:30 a.m., and told her that the surgery had gone well, and that as soon as the fluid drained, my heart started beating normally again. I spent the morning in ICU, where Josh and Julie both came to visit. Katie was very upset because they would not let her in to see me. Justin was sweet, and stayed with her in the ICU waiting room. When Josh came to visit, I must have looked pretty bad because I have never seen Josh break down and cry until that day. He did, both in the ICU and later, when he was leaving the hospital. Julie told me later that when she saw me in the bed in the ICU, it really scared her. I had no color in my face, and was hooked up to so many wires and monitors she had a hard time finding a place to touch my hand. In fact she said I reminded her of her Grandpa Edwards in his casket at his funeral. I had no idea I was that bad at the time, but have come to realize just how close to crossing over the veil I really was. But the Lord kept me here instead. I do remember the doctor telling me when they were first starting, that they were going to give me something that would help me forget about what they were going to do, and it worked. Julie told me about spending time in ICU (I don’t remember it at all). She also told me that they did one of those trachea things where they stick the big tube down your throat during the surgery so I could breathe, and I don’t remember that at all. She said that when she talked to me after the surgery I was adamant that they did the surgery by going down through my throat, and wouldn’t be convinced otherwise. I don’t even remember it, or talking to her about that (she finds that somewhat humorous actually that I have no recollection of something so traumatic). They moved me out of ICU and into a regular room at about 1:30 pm.

First visit to E.R. - scary how close I came

Sat. Oct 4th Today was General Conference, and though I wanted to go with the boys to Priesthood, I just couldn’t do it. Julie and Katie went to a wedding Shower for Kirby during the Priesthood session. When she got back, I had been feeling very uncomfortable (a feeling similar to the shortness of breath from the fluid in my lungs) but it was different this time. I told Julie that I didn’t think I could make it through the night. I later realized that the Lord was prompting me to get to the ER right away.
So at 10:00 pm we headed to the emergency room at the hospital. It took a few minutes to check in, and then Julie went to park the car and they took me back to a room. Within minutes, there began a flurry of events that happened so fast, I still can’t remember it all. By the time Julie got back from parking the car and found me, there were four different Dr's working on me in that little room. They hooked me up to all kinds of monitors, checking my heartbeat, blood pressure and oxygen levels, put an IV in my arm, and put me on oxygen. They also gave me lots of pain meds, and some of them made me forget most of what happened that night. They then took me for a CT scan. Next, they gave me a lung treatment, where I breathed some sort of medicine in through a mouthpiece for about 10 minutes. That seemed to help me breathe more easily. We then waited for over an hour for the results of the CT scan.
Finally, the doctor came in and told us that there was fluid building up in the area (sack) surrounding my heart. This was called a pericardio effusion. Because of the fluid build up, they were afraid that my heartbeat was compromised. Next, a technician came in and did an echo-cardiogram of my heart, and the ER Dr called the cardiologist and the surgeon (Dr Woodbury) who was on call. They discovered I had an acute cardiac tampenod, which is a diminished ability of the heart to beat because it is being compressed by fluid in the sack that surrounds the heart. The cardiologist said that I needed emergency surgery to open a hole in the heart sack, to allow the fluid to drain, so my heart could beat properly. Things moved very quickly, and soon I was on my way to the OR. That is the last thing I remember.

Scans again

Thurs. Oct 2nd I had my lung area drained again for second time. I also had an MRI which showed some minor cancer in the brain.

Fri. Oct. 3rd Today I had a PET scan. Much more involved (but similar) to a CT scan.

First visit with Dr. Te (tay)

Wed Oct. 1st Met with Dr. Te (pronounced Tay) today. He has a great reputation of being a very thorough and excellent oncologist and we felt really good about him. We talked about the options and he scheduled a couple more tests like an MRI and so forth. We told him our main goal was to get through the upcoming wedding and then start on treatment. We also talked about maybe doing radiation to help with the pain in my back to make it a little more comfortable at the wedding as well. So we decided we would try and start the chemo the Monday after the wedding. We also set up to drain my chest again. The one thing that he and all the support people kept saying that really struck home with me was to not hesitate to call 24 / 7 if anything was worse or whatever.

Pre-treatment visits

Mon. Sept 29. Went and visited several people at City Hall again and it was good to see all of them again. I was out a little too long though, and got pretty exhausted, so I had to back off and go home and rest. Mom and Dad came down from Salt Lake to do what they could as well. But with their health, they are limited as well.

Tues. Sept 30 Rested a little bit today and got ready for the doctor’s visit tomorrow.

Hard to go to church

Sun. Sep 28. Julie did not want to go to church at all but went with me because I wanted us all to be together in church if we could. She lasted through the sacrament and then had to leave. The rest of us stayed for Sacrament Meeting and then went home.

Breaking the news to the kids

Sat. Sept 27 Today was really hard for us all. Grandpa and Grandma Faerber were able to bring both of the girls and Clint down for our “family meeting”. They were to arrive at around noon. We decided to go to Chuck-a-Rama first for some lunch and so we met everyone, including Josh and Kirby, there. It was good and gave us a chance to spend a little more quality time together before we upset everyone’s whole world. Then we went home and all gathered in the living room. I followed Dr. Rawson’s example and just came right out and told them. I said that they knew I had been sick for a while and we now knew what it was. I had cancer, and it was not a good kind. Julie gave them more details, and I tried to share my feelings as well. The important part was that I felt at peace. Though this was hard to understand, I had been able to accept it as the Lord’s will. I assured them that I was planning on fighting this and beating it if at all possible, but that now I had realized that Heavenly Father knew the bigger picture. He would guide us if we would turn our lives to him, and I felt I had done that. So, if it was my time to go home to Heavenly Father and He took me now, then He knew what He was doing and I would accept his will. I truly felt peaceful about that, and tried to encourage all of the kids to feel the same way. I also assured them that we were praying real hard to make sure that I was at least able to be here for Josh’s wedding, and that was our most important “short-term” goal. Then we called Grandpa and Grandma Cook and told them it was now ok to tell all my siblings. We had asked them not to say anything till after we had told the kids.

Fly home to St. George

Fri. Sept 26. I packed everything up in my car and talked to J Anderson about arranging to have someone drive it down to St. George and he said he would get that. Then I packed up my biggest suitcases with everything I would need (didn’t think there would be that much I would need). Said goodbye to everyone and had J drive me to the airport in the afternoon. The flight to Vegas was rough and the seat was extremely uncomfortable and hurt when I got off the plane. I determined that it was because a lot of the weight that I lost came off my backside and I had no padding like I used to. In fact Julie’s actual statement was “You have no butt!”. When I got to Vegas, Teresa had come down to help Julie the minute she called. It was a good thing because I don’t think Julie could have handled it without her. She has been good friends with Julie, and has rescued her on more than one occasion. So both of them were there in Vegas to get me. It was so good to drive up to my house and realize that I was home. All of a sudden I realized that I had been a little upset and frustrated with the Lord because we hadn't sold our house. We had said things like “Lord, we are doing what you wanted us to do, so why aren’t we receiving the blessings like we think we should? “ We couldn’t understand why, if we obeyed the spirit and I went to South Dakota, we had to live separated for almost a year and saw no activity on our house whatsoever. Now we knew. I felt bad because I had not trusted that the Lord knew a better way and he saw the bigger picture. We didn’t sell our house because I needed to come “home” to get better and St. George (and this house) was my home. He knew it and protected us from our own short sighted desires.

Getting ready to go "home"

Thurs. Sept 25. I got the numbers for the cancer center in St. George to Doctor Rawson and then got a flight on Allegiant scheduled for Fri. night. We called Julie’s parents and asked if they could bring the girls down to St. George on Saturday and we wanted to tell them all together. They said they would help us out. Then I wrapped everything up at work and got ready to go home (Anderson’s) and pack my stuff up. Just before I left, Kevin (my boss) came in and we talked for a few minutes. He assured me that they would do whatever it took and anything I needed, all I had to do was ask. Then he asked if he could pray with me. I have never had a boss or employee do that and it was really spiritual. I had lots of people there tell me that they would be praying for me and I think I am on every prayer list in South Dakota. I went home and started to get my stuff packed.

Ok.. It's for real.... Cancer

Wed. Sept. 24th The doctor (Rawson) called and asked me to come up and visit in the afternoon. I had told Kevin (my boss at work) that if it was cancer that I would probably be going back to Salt Lake for treatment at the Huntsman Cancer Institute. When I got to the doctor’s we got Julie on the speaker phone of my cell phone and he wasted no time beating around the bush. He came right out and said I had adeno-carcinoma which is a form of lung cancer but it had spread to other areas of my body. I could tell this really hit Julie hard. Because I had realized it two days before, I had actually come to accept it and it didn’t hit me as hard as her. The only treatment for me was chemo because it was too far spread. This hit us pretty hard, but I tried to keep a level head and ask pertinent questions. Since it was only Chemo for an option, he said I could get the treatment in Salt Lake or there in Rapid City (they have a fairly good treatment facility) or even in St. George. I realized at that point that I would prefer St. George with my family for sure. I said I would get the numbers for the facility in St. George and the doctor said when I got them to him, he would have his secretary set up an appointment for me next week. We then asked about time frames and he said he was not an oncologist, but it was not real good odds for me. He said this type of cancer they don’t refer to as curable, they just try and extend and improve the quality of life I have. This was pretty hard. So I went back to work and told Kevin I was headed home.
Started making some pretty tough phone calls to Holly and my Mom and Dad. This was not what anyone expected or wanted to hear for sure. But as we worked through it I started to realize a few things. First, I had been faithful in following the Lord’s will in moving myself to Rapid (although we weren’t always as happy as we should have been about it) and second, I had been trying real hard to live the best that I could. So, I felt a great peace that if this was what the Lord had in store for me, I was going to accept his will and try and make his will be mine and as the Savior said, Not mine, but his will be done. This was incredibly comforting and helped me a lot.

Drain Fluid - yuk

Tues. Sept. 23 I went back to the hospital in the afternoon to have the fluid drained from the lung area and it was amazing to be able to breathe again. I told everyone it is like when you are kids and your big brother sits on your chest and you think you are going to die but then they get off and you can breathe again. It was amazing the difference. They actually drained almost a full liter of fluid out at that time and told me that they probably would be doing it again if I was like most patients. Then I went and had the X-rays and they did about 30 of them from head to toe. I went home and waited for the next day’s call. I did tell Julie about the possible cancer conversation and that we would know for sure the next day I hoped.

Follow-up

Sunday (hurting too bad to go to church)

Monday: I went in the afternoon for the CT Scan and it was pretty un-eventful. Dr. Rawson called me that night at 5:30. Just hours after I had the scan and told me he was changing the plan. He told me that they had found “lesions” on my spine, my pelvis, and my lungs and he wanted to do a bunch more x-rays the next day instead of the Bronchoscope. He asked me if I was ok on the breathing because the fluid build-up was even worse than when he noticed it on Friday’s x-rays and asked if I thought I might need to go to the hospital. I told him that I thought I would be ok until tomorrow. Before he hung up, he said “Mr. Cook, I have to tell you, I am concerned about cancer.” I know that doctor’s don’t toss this one out lightly. Unless they are 98% sure, they don’t like to scare you with it so I had a pretty good idea that it would be cancer. Everyone tried to convince me otherwise, but I think it was at this point that I knew. At this point I decided that for this one night I would not say anything to Julie about that because she was worried enough as it was and there was nothing she could do about it until we knew for sure.

Lung Specialist

After I got back from the trip, I had an appointment to see a lung specialist (Dr. Rawson). After talking with him for a while, he seemed to be concerned about my rapid weight loss, shortness of breath and a couple of other symptoms that I noticed he reacted to a little differently when I talked about them. We scheduled a CT scan for the following Monday and planned on a Bronchoscope (sp?) for Tues. I went home feeling better because at least we had a direction now that seemed to offer hope of resolution. Until then it seemed like we were just “shooting on the dark” and “if this doesn’t work we will try something else”. Dr. Rawson did say that at that point “nothing was off the table”. He said it could be anything from aggravated pneumonia to Hodgkinsin’s disease to cancer and he did say the word cancer. He also said that I had a lot of fluid in the sack around my lungs and he wanted to drain the fluid and run tests on it and that would help my “shortness of breath”, because my lung was partially collapsed because of the excess fluid and we planned on draining it the following week. I called my sister Holly (in Ohio) and talked to her about some of this because I had a bad feeling and needed to talk to someone I could trust. She helped me a lot and then did her Mission President’s wife thing and started to research it for me. All her research did not lead to positive “anything” either. In fact she confirmed with her research what seemed to be what everyone else was alluding to and that was not happy.