Thoughts From A Caregiver

Wow. Six months since the last entry. Life has just been going by.

We have celebrated and remembered one year anniversaries – doctor appointments, first time we heard cancer, tests and surgery. All of them we can celebrate for Scott being here a year later but all of them hard and sad at times too. It is hard to relive those emotions and feelings. It’s hard to think about all that we had gone through; what Scott had been through. On the other hand glad he made it through.

Scott has been to see Dr. Jackson in December and then again in March for his check-ups. Everything is looking good. His blood tests are all good. Dr. Jackson even said on the March visit that he may be going to every 6 months sooner than expected. His next appointment is scheduled in June. He will need to have a CT scan scheduled after that appointment. Scott has gone to these appointments without me. Felt OK about that. Maybe I will start going with him again. I don’t know. Sometimes feel guilty about not going with him, just in case he finds out some bad news. For me, there is still anxiety each time he goes. It is the day that I think about cancer more than the others I guess. Sometimes I feel the further away from it we are the more it is on my mind. The cancer seems to be on my mind more, but the miracle of healing seems to get lost. I have to remind myself of how miraculous this all was. In this case the routine of life has returned and not for the better. It amazes me how quickly we can forget what God has so miraculously done for us. Maybe that is why cancer lays heavy on my heart, so I will remember.

Scott has also seen Dr. Andrews. He has had a routine physical. How’s that for a guy that never went to the doctor. He now has a doctor that he goes to for routine physicals. Everything is well with Dr. Andrews. He just wants Scott to lose some weight and get out there and exercise a little. Easy for him to say. This has proven to be very hard to do. We will work on this together.

Scott has rounded out the doctor visits with seeing Dr. Soosaar also. He was in for a final check-up with Dr. Soosaar and the inevitable was discovered – the dreaded hernia. Everything else checked out great. Dr. Soosaar said that there was not any rush on the surgery to repair the hernia. It was decided that when the port-a-cathe was able to be removed we could have the hernia repaired at the same time. Dr. Jackson told Scott during his December visit that the port could come out whenever he was ready. Surgery was scheduled for February 29. The surgery went great. They found the hernia to be a bit larger than they thought and a lot of scar tissue. No problems really on either one of these – repaired the hernia and took care of the scar tissue. Scott was sore from the surgery but all things considered doing very well. In true Scott fashion, he was back at work on Wednesday. He has since seen Dr. Soosaar for a post-op appointment and his last one. To me it is really sad to not have to see Dr. Soosaar anymore. He seems like a friend to us; having gone through so much together. I don’t know if this is possible with a doctor, but it certainly feels that way. I know that Scott will miss the great conversations they had after his check-ups.

Scott and I have also been able to finally celebrate our 25th wedding anniversary. 10 months later than expected. We went on a much needed, long over due, weekend away. Our parents had given us a gift certificate to stay at Whitestone Country Inn. It was a great time. We were able to relax and enjoy a beautiful place. Austin probably enjoyed us being away as much as we did.

The side effects come and go for Scott. Sometimes his feet really bother him and feel tingly and numb. His hands seem to be a lot better. Every once in a while they will bother him some. The chemo cloud is still hanging around. I don’t know how else to describe it other than he just gets spacey sometimes. Although sometimes we wonder if it just is the age thing!

As I type this today, Scott and Austin are off in Nashville at GMA week. They are spending the week together. They have grown so much together as father and son. Two years ago at this time we had no idea what was going to hit us. God has really brought us through it. I don’t know if we are on the other side of it. I don’t know if we ever will be. It seems that it will always be a part of us. I wonder if it will ever be done. That doesn’t really make any sense. Life is life. It’s not done until God says it is for each one of us. Every day just keep walking, one step at a time.

Josh and Dusty were married today. It was a great day!

Someone told us back when Scott was still in treatment that she really had us on her mind and in her prayers. Her husband had colon cancer and their daughter was engaged to be married. Her husband died before their daughter’s wedding. I know that she meant well by telling us this, but it was always in the back of my mind from that point.

Today I am so thankful that God has blessed us with Scott at his son’s wedding! What a glorious celebration it was!

Marching season has been our life in the fall since Austin started in the marching band. It seems strange to think that a year ago Scott was struggling to get through every football game to see the halftime show, every band competition to see Austin. This year the struggle to get through is only because the bleachers are very uncomfortable! Scott has made it through every performance. I think he might even be making up for lost time because we have seen almost every band at every band competition – we didn’t do that even in years before. It has been good. In some ways it feels like we have come full circle through recovery – it’s better now. It seems fitting that the band’s last competition and Austin’s final high school competition ended with 1st place for the band and 1st place percussion.

First post-chemo visit with Dr. Jackson. I decided to go with Scott for this appointment. He said I really didn’t need to do that. I kept saying that I was going to go for him, for support. I think I probably went more for me. It felt strange to go back into the office after being there so regularly. Didn’t really know how I should feel about this. I was so afraid that his blood test would show something bad and that his markers would not be good anymore – that the cancer would be back. At the same time this seemed so ridiculous because it was too soon to really start showing up again. At least that is what my mind kept telling me.

Dr. Jackson came in surprisingly on time. All of Scott’s blood test came back great. White blood cells and red blood cells are still a little low but rising. Cancer markers were still great. Talked about Scott’s after effects from chemo. Scott was still having some numbness in his fingers and his feet. This has been a little frustrating to him – can’t button his shirts some days, trouble turning pages, opening jars, falls down the stairs because can’t feel the bottom of his feet. Dr. Jackson said this is normal and should return to normal function at some point. All things look good, come back and see him in December.

We went back to the infusion room to see Phyllis and Debbie. It was great to see them and tell them again how much they meant to both of us. I’m sure we will check in on them every time we come in for a check up.

It was good for me to hear all of these things. I guess that is why I needed to go, for me to hear that it is good. It was a much lighter walk to the car this time – some anxiety lifted from our shoulders.

Scott went to see Dr. Soosaar for his post-op appointment. I was glad that this day finally came. I just need to know that everything is ok.

Everything did look good. A little redness around the incision and somewhat swollen, but nothing to be concerned about, should get back to normal. Dr. Soosaar was on-call and had a couple emergency surgeries during the night. He was checking on Scott and then heading to another surgery. He was telling Scott that he had another hard day. Scott was able to tell him that we would be praying for him. It was nice to be able to pray for him instead of him praying for us. He told Scott that he needs to take care of himself because he had a lot invested in him and he was his miracle. Just because of the miracle, he will.

Scott will see Dr. Soosaar in 3 weeks for another check up.

I went into work on Thursday just for a couple of hours. I had a few things that I had to do. I was thinking about going in for a ½ day but just didn’t feel right being gone from the house that long. I’m sure Scott would have been fine but I’m not sure I would have.

Scott was eating light meals and was having some bowel movements. There was a definite urgency about them. When he had to go he had to go. There was some concern about making sure he made it to the bathroom. Scott thought that he would be able to go back to work this week but at this point decided that was not going to happen.

Thursday late afternoon he took a shower and we changed his dressings. I looked at him and smiled; it really was gone. No stoma, no emptying or changing a bag, no worry about leaks or spills. It was a great feeling for both of us.

This life chapter was coming to an end.

We had a very exciting morning. It all started at 5:20. Scott was all smiles. He had his first bowel movement. We never thought we would ever be excited about something like this. We were. Every time he went after that we wanted all of the details – how was it, how did it feel, what did it look like. We have finally gone over that edge!

Beth came in to check in on Scott. Looks great. The next step is to have a meal with soft foods. Breakfast was brought – cream of wheat, coffee, apple juice, vanilla yogurt, and milk. It was all finished, even the yogurt which Scott doesn’t even really like. About an hour later another breakfast was brought in for him. This was the next step – more cream of wheat, coffee, juice, and yogurt, but also scrambled eggs and toast. He ate the scrambled eggs and toast. It tasted great!

Ian Walker came by again today. He had the right person this time!

Scott went for a lot of walks around the floor. Even one of the other visitors said oh, you’re the walker. Scott is now known as the one who exercises. One of our walks we ran into Dr. Jackson at the nurse’s station. That was unexpected. He asked what Scott was doing there and then quickly realized it was for his ileostomy takedown.

Dr. Soosaar came in to check on Scott around 2:00. He was in between surgeries. Basically he said that everything was progressing as it should and if Scott felt ok with it he could go home. There wasn’t anything else that they could really do at the hospital and for the price of the room he might as well go home. He gave us his discharge instructions. I started packing up our things. It took about an hour for everything to get processed. The last thing that the nurse did was remove the IV. Scott was going to take one last trip to the bathroom and change into his clothes. I guess it was too quick after the IV taken out; blood started flowing out of his IV site. I grabbed a nurse that was coming out of the room next door to us. It was amazing how much and how fast the blood flowed. The nurse got it stopped right away. Of course there was blood all over the shorts he was trying to put on, so he ended up where his pajama bottoms out of the hospital. He still looked good.

We got home and got him settled. He ate some supper, took some pain medication and went to bed. It was good to be home.

After little to no sleep, Scott decided that maybe walking would help his urination problem. This was 6:00 a.m. I was a little cranky about this decision. He said he would walk by himself – No! Even in my lack of desire to go for a walk, he would not be going by himself. We did walk around the floor about three times. I don’t think it helped, but he did get some good walking in. I went to get some coffee and a muffin and later took a nice shower so I felt less cranky.

It was a long day of not much going on. We didn’t see the day nurse until about 9:45; another nurse from December. She checked his vitals, his incision, lungs, bowel sounds which were minimal, and urine output – 100cc. As the day progressed his blood pressure was getting lower and he was urinating less. This was all the same things that happened in February when he ended up dehydrated and kidneys shut down. We were waiting and anticipating Dr. Soosaar’s visit so that we could talk to him about this. The nurses didn’t seem to get it and didn’t seem to have a lot of concern. They just wanted him to go, which he couldn’t. It was all very frustrating.

At noon the most exciting thing happened – Scott passed gas! This hasn’t happened since December when he received his ileostomy. On all of the other floors in the hospital this is hidden, here on the 7th floor this is celebrated and proclaimed.

Scott had his vitals checked right on schedule at about 3:00 in the afternoon. His blood pressure was 91/58. This was a path we did not want to go down. Scott asked me to talk to the nurse and get Dr. Soosaar. The nurse decided to call and found out that Dr. Soosaar was running behind and was at the office and would be by to see Scott as soon as he could. Some more of that IV stuff was ordered for Scott. This was all very frustrating.

Beth came by to check on Scott about 5:30. She said that he looked good, dehydration was normal given his surgery prep he did on Sunday, not to worry. She told us that he could finally have a liquid dinner. Finally something other than ice chips. Even a liquid dinner sounded good to Scott.

Dr. Soosaar came in at about 6:00. He looked exhausted, so exhausted that the frustration of why he wasn’t there earlier quickly vanished. He sat down and said that it had been a really hard and long day. He looked it. He also said that everything looked good. The surgery was routine. The only thing that we need to watch is the incision area had thinned out and has the potential for a hernia.

Scott finally received his supper. He was so excited for anything. He had broth, cranberry juice, coffee, and orange jello – I think it was gone in 30 seconds!

Austin had come by during the day; Josh stopped by after work; John, Karen and John Mitchell came by at night. Ray Cordery called several times; Carl called; Chuck Durant called – everyone just checking in on Scott.

The nurse let Scott sleep through the night; no scheduled check ups. It was so good to sleep.

Surgery day. This was the day we had been anticipating for a long time. I remember when I asked if this could be done before chemo started in January. I didn’t think we could make it to this day. I guess we did.

Scott needed to be at the hospital at 7:30 for a 9:30 surgery. We had packed our bags the night before, so we were ready to go. We arrived to surgery check-in about 7:20. Some of those same old feelings started coming back. Did not like those feelings. The anxiety wasn’t as bad though.

Scott was called right away. That was good. No time to sit and relive earlier times. We ended up having the same pre-op nurse. It was a little strange to see her do everything in the same manner as before. It almost felt the same. Scott seemed to be doing well for the most part. He started getting a little nervous. I don’t know if it was more just the surgery or the recovery. I think Scott’s prayers were more about the results and what to expect after; will there be any problems regaining control, what will it feel like. For me I was a little nervous more for the actual surgery. The not knowing again. It seems strange but my prayer and concern was that after all that Scott had been through, that God would not take him with this surgery. I wanted to make sure he was still around for the celebration of all of this being over.

The anesthesiologist came in and told us what she was going to do. When they come in we know that the time is getting close. The nurse came in and said that Dr. Soosaar was ready and that he would probably take Scott early. That was good. The waiting around is sometimes harder than the actual event. Dr. Soosaar came in and talked with us. He let us both know that he expected this to be a simple surgery; he wasn’t expecting any complications. Dr. Soosaar again asked if he could pray with us. We had hoped for this again. The nurse came in and took Scott a little early, about 9:15. We exchanged kisses and “I love you’s”.

Scott was wheeled off to surgery and I went to the waiting room. Karen was there waiting for me with coffee. She had called the night before to get my order so there wouldn’t be any problems for her to know what to get this time. Vanilla Latte. It was so good to know that a good friend was going to be there waiting with me. Karen has waited with me many times through all of this.

The first phone call came into the waiting room for me at 9:45. They were just getting started. We were told that the surgery would be about an hour to an hour and a half. The clock was now ticking. The time went by at a nice pace. Karen and I were talking about all different things; we don’t always get to do that. It was good. Kay Rule from church stopped in, I think it was about 10:30. That was nice.

I really thought I would be getting several phone calls into the waiting room, but the next contact that was made was actually Dr. Soosaar himself in the waiting room. It was 10:50; the clock was now done ticking, perfect timing. He said that Scott did great, there were no problems, all very routine. This was great to hear, love routine! Thank you God for allowing Scott to stay with me.

I called Josh and Austin, then our parents to let them all know it was all good. Ian Walker came into the waiting room to see how it was going and pray with us. He prayed for me and Richard! He left and then Kay left. Another phone call came into the waiting room for me saying he was in recovery and would be in his room in about 45 minutes. I told Karen that it was ok for her to go, I would go up to his room and wait for him to get there. Karen left and went to SteinMart. One of the many things that we were talking about was were I could go to get a dress for Josh’s wedding. She went there to check it out for me; she called to let me know what she found!

45 minutes seemed to take a long time. Scott finally was brought to his room. He looked good. The nurses got him settled into his room. The nurse was one that he had in December. He was in and out for awhile, trying to wake up. He could only have small amounts of ice chips. He had to go very slowly on his intake of anything.

Austin and Cyndi came up to the hospital after band camp and lunch. Cyndi left within the hour; she had to get going home. Scott wasn’t feeling well at this point so I guess it was good for her to leave. He had a lot of nausea. Even Austin couldn’t get him to smile. The nurse would come in to check on Scott. She would ask if he had urinated yet. He hadn’t. She told him that if he didn’t start he would have the catheter put back in. This was not an option with him. It was a little frustrating because it didn’t seem like there wasn’t much fluid going in to get any fluid coming out. Scott tried to push it out; wasn’t sure that you could really do that. The nurse wanted 200cc; Scott by the “power of positive thinking” pushed out 175cc. The nurse said that would be ok with her and she wouldn’t push for the catheter.

Scott did end up throwing up the only liquid he had in him from the ice chips. The nurse even had to measure that. Everything that comes out gets measured! Austin kept being asked to leave the room every time bodily fluid was ejected. He really didn’t know where to go, so he would take the elevator down to the main lobby, get settled with a magazine then be told he could come back. We finally told him to just wait in the hallway. I’m sure he was ok with that plan.

Josh came up to the hospital after work. He, Austin and I went to the cafeteria for dinner. They both were concerned for their dad and were trying to get as much information from me about how he was doing. It was good to talk. Austin did just about give himself a concussion putting his tray back after dinner. He didn’t duck when he should have and hit his head on the wall. I guess he was in the right place for an injury. Josh and Austin left around 8:00 to go home. It was really nice to have Josh at home this time. It was good for both he and Austin.

The night nurse came in. Another familiar face from December. We tried to get some sleep but there is no sleeping in hospitals. The patient next door to Scott had a rough night; we both just prayed for her; Scott couldn’t sleep well, kept trying to urinate, nurses coming in every four hours to check vitals, kept trying to urinate, blood tests to be taken, kept trying to urinate. The nurse asked Scott if his bladder felt full – No. She decided to scan his bladder to see how full it was – only about 100cc. She called the doctor and ordered some kind of IV to help push it along. At least the catheter didn’t seem to be a part of his future, but the kidneys were obviously not getting back to work. Scott continued to try and would will about 100cc each time.

We all went to church. Pastor James was preaching his last message to us. We found out last week that he was leaving and moving where God was calling him. It was good be in church; reminder of how many people are praying for Scott, worshiping together, feeling God.

Once we got home Scott had to take the first of his medication. I don’t remember what it was called, but something to clean out his system. It certainly did that. He filled up his ostomy bag quite well. It was pure liquid which is actually much heavier than normal waste. It would pull on his bag so he had to empty a lot. He had to do this again at 7:00 in the evening. Same result.

A special shower was also required at night and then again in the morning. Beth gave him a scrub sponge, which looked just like what would be used in an OR. It was to get his body bacteria free before surgery. If he wanted to wash his hair he would have to do that first so that this scrub could wash away any shampoo that got on his body. It also had a warning on it for nothing on the face, could cause permanent blindness – what else might it affect below the neck was the appropriate question. All very strange.