Home care people to the rescue

Fri. Oct 17th Home hospice person (her name is Heather and she was great) came to train Julie some more on changing bandages and other things that she would need and we set up a schedule for her to come a couple of times a week to begin with and then we would work back from there. This is a great service they provide and I can not believe how blessed we are with the technology and care they can give now. The Lord has a purpose for me here I know after all the miracles that have happened to keep me here on this earth for now. We are constantly noticing angels on this side and the other side of the veil as promised in Pres. Jensen’s blessing to my wife.

Check out of hospital (part 2)

Thurs. Oct 16th Even as late as this morning, there was some question about whether I was going to be able to go home or to the wedding, but again Dr. Te worked with us really well and I worked hard to get me ready to go. I would get up a couple of times during the night and go for little walks around the hospital wing with the nurses and I would try and eat as good as I could and drink fluids and everything but I could tell that Dr. Te was still a little hesitant thinking it may be early for me to leave the hospital, but they eventually did let me go home and we checked out.

Temple recommend in hospital

Wed Oct 15th Had a most incredibly spiritual experience today. As promised at 7:00 pm. the bishop from the hearing ward (Bishop Hurst) and one of the Stake Presidency came to my hospital room and gave me a temple recommend interview that I will never forget. I was sitting on the edge of my bed in my hospital gown and they sat on the little couch in the room and talked to me about my situation for a minute. Bishop Hurst has some insight into my situation as he just finished chemo and cancer treatment recently as well, and he knows Julie and Justin real well too. He made the comment to the councilor (can’t remember his name) that he truly felt I was ready to go to the temple if anyone was. I agreed with him as I had been so close to the veil several times and had been the recipient of many miracles and spiritual experiences. Bishop Hurst asked me the first few questions and then the Stake President asked me the rest. When he asked me if I felt worthy to go to the temple I replied “More than I ever have in my life” and it was true.

Fundraiser in Rapid City

While this was going on at the hospital, the City of Rapid City had a fundraiser for me.
Fundraiser in Rapid (Oct 14th)
Kevin (my boss in Rapid City) had asked me if it was ok with me, if they did a fundraiser barbeque for me there and I said sure. I was expecting a little lunch thing and a few people that knew me well to come and share a burger and donate something to my cause, but I was a little bit overwhelmed when I found out what they did. The Civic Center donated the barbecue stuff from the concessions, a lot of people brought stuff to donate for the lunch, and they advertised with a couple of announcements using that famous golf picture with the buffalo on my door. They had everyone sign the “huge” card and a lot of people apparently came and got some lunch. When they collected everything up, over 150 people came and they collected a substantial amount of money which they then mailed to me in a check. I was completely humbled and overwhelmed. I had no idea that that many people even knew who I was (let alone cared enough to support me like that). The Mayor had told me (when they were recruiting me) that I would never meet any better people than I would find in Rapid City and I could not agree more. They have shown me a different side to a city organization that I had never seen before and nearly every single person that wished me well from Rapid says that they will “keep me in their prayers”. What a powerful thing and I know that I am being blessed because of these good people as well. It was truly humbling and much more than I expected.

Blood Clot in arm

Tues Oct 14th While they were doing all this, my left hand began to swell up to the size of a small grapefruit. It was pretty funny looking but scary at the same time. It even hurt somewhat so we began to be worried. They did some ultrasound testing on my arm and identified a blood clot in my left arm so they had to start doing all testing on my right arm. They put me on kumedin to try and thin my blood. This again was a concern because of the potential risk blood clots immediately pose on top of all the other things I am going through. When they were going to drain the fluid from my chest area every day, I would usually tell them to wait until Julie came over because she had been trained by the “home hospice” people how to do this special drain. They trained her after we got released from the hospital the first time and it was a new technology thing that most of the nurses at the hospital had never done before. I had one nurse though who was sure she could do it. I tried to help walk her through the steps as best as I knew and one thing I stressed to her was not to lose the little white cap from the end of “my tube” when you took it off because we were told they couldn’t just replace the cap. It was part of a complete kit (the rest of which was inside my body) and it was very expensive if they had to break open another kit just for the cap ($900). Well she didn’t pay attention or something and ended up accidentally throwing it into the garbage and when we couldn’t find it at first I kind of went a little bit nuts. (It was really weird for me to do this but I did) and when Julie got there she calmed me down and they eventually got everything straightened out and it was fine, but I kind of “lost it” a little that morning.

Port-a-Cath (permanent IV)

Mon Oct 13th As they have been doing a lot of blood work and constantly poking my arms for blood tests and they also had to move an IV from one place to another (not to mention that the original IV from my first visit had to be moved as well (as it started to be painful) they found that all my veins were collapsing and they couldn’t ever get a good IV inserted. They eventually talked to us about a PIC (more internal IV in the arm) and finally they suggested and we agreed to have something called a “port-a-cath” (port for short) which is where they surgically insert a tube just under the skin in my right shoulder / chest area and then this tube feeds down into one of my main arteries. Then when ever they need to give me something they would typically do an IV for they just plug into this “ready made” IV. Because it goes right into that main blood vessel, they can even use it to “draw” blood for tests from the same tube. It is really amazing technology. So we did that one last surgery and even when they tried to get me ready for it downstairs it took three of their best doctors in radiology working together to find a place they could get one last IV in halfway up the inside of my right arm. It took them three tries in other places first. This will also be extremely useful for the chemo treatments because they can use it instead an IV every time to administer the chemo. It is much easier and a lot less painful as well.

Note: everyday I have to go over to the old hospital to the cancer radiation treatment center and so when they are scheduled they get one of the small transport vans to come get me and they pack me all up, wheel me down into the van (I am sure I looked funny all wrapped up in the wheelchair, toting my oxygen, dragging my catheter, but to be honest…. I didn’t even care). The drive over in the back of that van was quite a trip too. Sometimes the “kid” drivers I don’t think realized how bad you bounce around in the back of those vans. I was just glad they had me belted and strapped in tight and I usually made sure I took good medication and drained my chest every time before I went or I almost refused to go. That was an adventure too.

Angels promised to Julie

Sun Oct 12th Today I had a few visitors and one visit was from the Deaf Branch President (Jensen) and our great home teacher (Jimmy Harris). It was great to have them come over, but even more important was the fact that they went to visit Julie and Katie after my visit and while they were there visiting Julie, they asked her if she wanted a blessing. Everyone focuses on me and making sure that my needs are accounted for, but Press. Jensen and Bishop Hurst being the good leaders that they are were one of the few priesthood leaders that realized just how difficult this is for the support people (and in this case the wife, nurse, and total care-giver). All of this is on top of the fact that she has to address all the new financial responsibilities and costs associated with my drugs and other new needs from my hospital visits, while still keeping up with her other motherly responsibilities. With a deaf child, there are additional responsibilities for her care. Then there is the laundry, house cleaning and making sure the kids do their homework, get to play practices, turn in all their assignments etc. This is more than anyone should be expected to have to deal with ever, let alone all at the same time as a needy hospital patient trying to come home dependant on her (more so than my) ability to handle it.
In his blessing for Julie, President Jensen told her that there were “angels on this side and the other side of the veil that were waiting to help us push through our times of trials and we needed to ask for their assistance.” This really struck Julie and she had a picture of a painting come into her mind and we eventually would adopt this as our main form of support and encouragement through this whole thing. It is the painting by (???) of the saints pulling handcarts in the winter blizzard of Wyoming and there are several angels helping the pioneers pull their handcarts as they look like they just can’t go on anymore. Julie told me about this when she came to the hospital and it was quite a beautiful and inspirational thing for us both.

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.