Journal

Journal entry by Kathryn Hagen

Scot had hoped to be back to work by now, but he has not made as much progress as we would have liked. This is going to be a slower process than we planned and therefore when some wonderful people reached out to ask if they could hold a benefit, we said yes.

Scot still is relying on his G-tube for nutrition and I believe it is daunting for him not to be able to just eat. I know that it frustrates him as much as the excess phlegm and crap that he coughs up. He continues with therapy and is making small gains.

On a positive note, when they put the scope down his throat, they could no longer see the mass that they could before. On the down side, Dr. Speer did say there still was a nodule on the side of his neck (but that could be anything, too uncertain at this point). We go back to the U of MN later this month, until the PET scan, we play the waiting game.

There comes a point when you have to swallow your pride and accept any assistance you can. We appreciate the continued support of our family, friends, and community as we could not have made it this far without all of you.

You should be seeing fliers on facebook or in your communty for an upcoming benefit for Scot. We are currently looking for auction items! If someone would like to donate a silent auction item or basket to be on the auction the night of the benefit, please contact Summer O'Neill at swimkids77@gmail.com or 320-579-0095. We can arrange pickup or meet you if needed. Mark your calendar for September 29 and come support the Hagen 5.

For now, I will continue to pray for simpler times, easier days, and a less hectic schedule. For those that are curious, I don't make a very good lefty. My right, broken radial head is not stopping me. Even though I may not remember what happened that day, I passed my concussion testing with flying colors and at therapy for my arm today I am already at 21% flexibility. Sheer determination can get many things, you just need to want it bad enough.

Faith, Hope, Love

Hagen 5
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Journal entry by Kathryn Hagen

There have been some changes in the past couple of weeks. Some of the changes are good, some not so good. The changes with Scot are not happening fast enough for him.

 

We met with Dr. Jose last week and all of his labs are back to where they should be. This is awesome news! Every cloud has to have a silver lining, right? He did talk about how we need to make sure to continue to have his TSH levels checked as where the radiation was given will more than likely affect his thyroid at some point. For now, it looks like they are all good.

Dr. Jose was slightly concerned about his inability to swallow as he felt it should have returned by now. Each person is different, so this is just one more minor bump in the road. Scot did start therapy this week. This is a step in the right direction. He is faithfully doing his exercises to try and regain the ability to swallow. For now, we are continuing to use the tube feeding to maintain his nutritional status. He needs to have good nutrition to get back to where he was before. On the bright side, it does not appear that he is losing any more weight. Overall, he has lost about 50-60 ponds. I would not recommend his diet. He is longing for FOOD J

Scot does continue to have the phlegm and bothersome cough, we were hoping this would have subsided by now… He is no longer taking any pain killers or nausea medication, so those symptoms have abated also. There does not seem to be anything that helps the phlegm. It is hard for him to deal with and hard for those around him to listen to him deal with. He is still not able to use is C-Pap, but I am longing for the day.

Most of the skin on his neck has regenerated, his ability to swallow is still not there, he has started to rebuild his strength- slowly, but surely. He has done more in the past couple of days than he has in the past couple of months.

Which leads me to the end of my post; there are a couple changes in the household. Everyone has someone they rely on… I have been relying on my mom to help get my kids wherever they need to be this summer and she has been an amazing help through this journey. Thursday, she took a tumble off her steps at the camper and dislocated her shoulder. She is still able to most everything, but does need a little more assistance than she did before. It kind of put a damper on the week.

The kids have been asking to go tubing for most of the summer, but Scot has not been up to par. We finally got him talked into it and Saturday was perfect. Though we did not stay out for very long, the kids had a blast. While we were loading up the boat, I took a tumble off the boat and suffered a concussion and broke my elbow. Not sure what the orthopedist is going to do yet, but we will see.

Just one more hill to climb before we get to the top… perseverance is the key! I think God knew Scot just needed one big push to get better J We appreciate the continued thoughts and prayers for his journey. Our many thanks to our friends and family for their support!

On a side note, there is another benefit set up for Scot set up for September 29… more details to follow!

 

Faith, Hope, Love🙏 

Hagen 5

Journal entry by Kathryn Hagen

No one thinks about what happens after treatment is over. I can tell you that from our perspective, there has not been much change right now. Scot has finished radiation and chemotherapy, but continues to go to Willmar three times per week for fluids as he is not strong enough to maintain himself otherwise. One would think that with a tube feeding, you would be self-sufficient, but his body does not believe so.

 

As far as how the two weeks after treatment have went… I suppose as well as could be expected. The nausea, phlegm, vomiting, etc. continue to be extremely bothersome. The days are long and some nights even longer. There were a couple days, where I came home from work, just to sit next to him as he felt so bad. And I felt so helpless, as there really was nothing that I could do to help him.

His last labs have improved from the week before, but he has very little strength at all and no stamina whatsoever. The blackened skin on his neck has blistered and started to peel off. His face appears gaunt as he has lost about fifty pounds since this ordeal started. He did try and take a swallow of water this week… did not go over well at all. He does have a referral to therapy to see what can be done to help him get back on his feet again. His goal was to return to work at the end of this month, but he has a long road ahead of him.

Scot was able to watch one of Elliot’s baseball games last Friday as it was a home game, but that completely wiped him out. He tires very easily. His mom did come out and stay with him this past weekend while Elliot, Maura, my mom, and I traveled to watch the Blue Angels play baseball. Unfortunately, they did not advance to the state tournament, but they made a valiant effort.

This week, Scot has had a lot of difficulty with his tube feedings. I finally told him that he needed to make an appointment on Wednesday as I had no more “tricks” that I could try to help him. They ended up having to place a new tube in on Wednesday as the other one had worked its way out of his stomach and the port entrance had actually started to close. Not good L

Today, when I got home from work, he was very flushed in the face. Apparently, he slept most of the day. It is not uncommon for him to run a low grade fever, but he refused to let me take him in as he has an appointment tomorrow at the Cancer Center for more fluids. I think he just favors those wonderful nurses there myself. I think they spoil him J

I will keep my eye on him tonight, same as I have done every night since this has started. I listen to him sleep/snore/cough/gargle/gurgle/spit/repeat… it is amazing the sounds that one makes when they are “sleeping”. As I drift off to sleep, I dream of the day when he can get a peaceful night sleep with his C-Pap machine running as he has not been able to utilize it since the beginning of June. I think that was the last time I had a full night sleep… LOL

We appreciate the continued thoughts and prayers for healing. Our many thanks to our friends and family for their support!

 

Faith, Hope, Love

Hagen 5

Journal entry by Kathryn Hagen


We have finally made it to the final week of treatment. We met with Dr. Jose on Monday, July 16 before the last round of chemotherapy. He told Scot how proud he was of him to make it this far as many people do not. There are many people who are not able to complete the third round of chemotherapy during this treatment regime due to the severity of symptoms that it provides. The down side to not receiving the third dose or having to take a break in treatment is the higher possibility of the cancer not being eradicated. Dr. Jose did warn him though that the next ten days will be the worst he has ever felt.

In order to receive the third dose, Scot’s blood work needed to be within their “range” of safety. Well, in the past week we had a new development of Scot not being able to swallow his pills and an increase in nausea, so this may have affected his numbers slightly. Scot’s numbers were at the absolute last bottom number they could be to qualify to still receive treatment. His numbers were so low that Dr. Jose even felt that he could not give him the full dose, so he only received 80% of what the first two treatments contained.

As far as other issues this week, Scot’s skin on his neck has started to fall off. Dr. Speer has prescribed some medication to assist with protecting the area, but this was to be expected. The area where the radiation was concentrated was almost black and now that area is “bubbling” and falling off. The hair on Scot’s neckline has also receded in certain areas to match where the radiation line is. I offered to cut it to even it out, but her refused for now. He wears it as a badge of honor, as he should. He has fought this battle well.

We are continuing with the tube feedings (no continuous feed as he is still adamant about that), but Scot is starting to dream about food. He cannot remember what he was eating in his reams, but he knows it tastes amazing! We are hopeful that his ability to swallow returns quickly, and the nausea goes away just as fast as his weight continues to decline. Every time we think we have it under control, his nausea kicks in and two more steps backwards. There really is no saliva, only a thick paste like material- which probably doesn’t help much. The gagging and vomiting continue, with nothing that we have been able to find to improve it.

Today is the last day of active treatment. Scot will have the last radiation treatment. Next week and the following week, he will continue to go to the Cancer Center for fluids and blood work to make sure he is on the road to recovery before going back down to the University of Minnesota in September.

Scot gets tired very easily and has no energy at all. Due to his low blood counts, any infection at all will probably put him in the hospital. He doesn’t really go anywhere other than to treatment, and is sad that he has missed so many of Elliot’s baseball games, but we cannot take that chance. Thanks again to all of the wonderful people that have stepped up and help during this time. We appreciate it more than you will ever know. The battle is so close to being completed and then the healing will begin.


Faith, Hope, Love

 

Hagen 5

Journal entry by Kathryn Hagen

During week five to six of treatment there were not many “new things” that have transpired. The only thing that is definitely noticeable is his really dark tan on his neck. We are doing everything we can think of to keep the skin soft and not blister/burn/peel. Radiation burns are painful… L

Scot continues to not be able to take anything by mouth and is relying solely on his tube feeding. This has continued to be bothersome for him as the nausea has not abated at all. The little bit of thinner mucus/saliva that he did have is now gone and he is left with only a thick paste like material. The gagging and vomiting continue, with nothing that we have been able to find to improve it.

The past couple of days he has expressed his extreme discomfort after radiation that he feels like he is choking to death. I cannot fathom what this is like. They have had to tighten his “mask” for radiation as his weight loss has continued. He is now down about 40#, maybe a little more. We cannot seem to get it to stop, but at least we have slowed the weight loss. This is hard for me to watch. The dietician did offer for him to be on a gravity feed for tube feeding as she felt this would help with his nausea and stop the weight loss all together. If he did this, he would be “attached to a pump” for feedings continuously. At this point, he made the decision not to do this (personally, I think he did this just because he doesn’t care for herJ).

As far as other things, he does feel like the blood clot in his leg is finally resolved (which is presumably caused from his cancer). This will not be able to be check until after the next PET scan in September as he will need to stop taking the Coumadin in order for further testing to be completed. The Coumadin cannot be stopped until we know that the cancer has been OBLITERATED.

On Monday, Scot will have his last dose of Cisplatin. As we have seen with the previous doses, they definitely take a toll on his body. As his body has become weaker, the after effects are felt more. Since the last dose of chemotherapy, we have increased his fluids/IVs to three times per weeks to help him bounce back. Hopefully, this will help him not feel so ill this time around. The last dose of radiation will be next Friday (only five treatments left). After next week, he will continue to go to the Cancer Center for fluids and blood work for at least a week to make sure he is on the road to recovery before going back down to the University of Minnesota.

We are nearing the home stretch and can see the light at the end of the tunnel. As a family we have experienced many difficulties and our family and friends have been amazing throughout this journey. We could not have made it this far without all of you.

Faith, Hope, Love 🙏 

Hagen 5

Journal entry by Kathryn Hagen

We are at the half way mark and it sure has not been any easier. Scot continues to experience some of the same issues, except that now they are way more bothersome than what they were prior.

On Monday, June 25th, Scot received his second round of chemotherapy infusion. He did find out why when the drug Cisplatin originally came out it gave chemotherapy drugs such a bad name. This drug can make you terribly ill. Now they have come a long way since this drug was first manufactured, so there have been improvements, but if you ask us… there have not been enough. We will not complain if it does the job that it is meant to do, and that is to knock this cancer out.

Scot is relying completely on his tube-feeding and at times is no longer able to swallow his own spit. He is up almost every hour at night to spit. For those that are faint of heart, skip to the next paragraph… Imagine your worst chest/head cold with the thick mucus running down your throat… now make that thick like paste as he really has no saliva anymore. That is what Scot is experiencing 24 hours a day, seven days a week. It has to be the most awful experience to always feel like you are choking on slime (his words).  

Due the extended period of nausea and excess amount of mucus, he did end up not feeling so well the end of last week and into the weekend. On Sunday, he just could not take it anymore. We made the trek to the Emergency Room, where they ran a bunch of blood work, took X-rays, and urine sample to make sure that he did not have an infection as his white count is not where it should be and he is very susceptible to infection. Other than his sodium level being low, all appeared to be as normal as it could be. He received fluids and anti-nausea medicine, but the day was never ending for him. I could see defeat on his face and it was the first time I have seen him be negative.

We are back on track though after that nasty beast reared his ugly head, he is feeling better this week, and tube-feedings are back on track. He still has some of the same issues, though they are not to the extreme that he cannot keep up with his tube feeding. Pain does continue to be an issue, so eating is out until the healing process can begin. He does sit at the table with us sometimes and does his “own version” of eating.

Hopefully, we can continue on this path. Only ten radiation treatments left and one chemotherapy round until this is over. This will be the hardest two weeks thus far. Please send us extra prayers as we will need them.

Once again thank you to those who have volunteered to help with the meals, raffle, rides, calls, etc. Your help is so appreciated and does not go unnoticed. There are only a few tickets left out there, so as soon as the money and tickets are all collected, we should be able to hold the raffle. Good luck to those who purchased tickets!

Faith, Hope, Love 🙏 

Hagen 5

Journal entry by Kathryn Hagen

We are working towards the half way mark and then it is only downhill from there. Things are going faster now than what we had originally thought they would. Whether you look at this as a good thing or a bad thing, we have yet to see. The physicians have assured us that everything appears to progressing as normal (or at least as normal as whatever they call normal)!

I am not sure if I should start with the good the bad or the ugly. So let’s start with the good. Scot is still in good spirits most of the time. We are tackling one battle at a time and that helps, along with all of the support that we have received from our friends and family. We could not have accomplished what we have thus far without all of those people that have stepped up and offered meals, rides, money, hugs, texts, calls, visits… the list is endless. Our thanks are the same. Please continue to pray as our battle is not over.

As for some of the bad, there have been a few instances during this past week that have been concerning. A word of advice to others that ever have to go through this… If you are a “couple” and one of you usually takes care of something, make sure you have some idea of what the other takes care of so that when they “lose their memory”, you can pick up the slack. For example: if you decide to go fishing or take the boat out for a leisurely ride around the lake- put the plug in or if you normally bring the meat to the camper, and you no longer can eat whole food- there still might be other people that can. Yes, you guessed it. Scot’s memory has a little bit of stress/chemo fog so we went about our business on the lake for some time with no plug in the boat because he normally does it and we take for granted that he did it… he also packs the meat for the weekend trip to the camper. He knew that he could not eat meat, so he didn’t bring any. We are all alive and it makes for great conversation now, but lesson learned for future.

As for the ugly, if you are following our meal post that Pastor Many has set up, you are aware that Scot has transitioned to mainly tube feeding. As our dietitian called it, he is eating for pleasure now, as Scot calls it- more like torture most of the time. (I don’t think he is very fond of her 😉  …) This happened very fast, he woke up one morning and could not swallow at all. It is definitely more difficult in the morning, there has been some bleeding noted during that time also, which is presumably caused by sloughing/dryness during the night. The odd thing about this is that Spencer is now eating more than Scot and we all know that he does not eat very much. In fact, Scot attempted to eat a plain burger on Saturday at the camper, he ate maybe half of it and Spencer had to finish it (after Spencer had already eaten his burger and a peanut butter sandwich).

We had the second chemo treatment this past Monday, and thus far the only items that we have noticed are the return of the hiccups and the orchestra at night. I never knew that a C-Pap could make the noises that it does, but at least I know (and hope) that it is short lived and will only last about a week. He continues with the slime/excess phlegm that is in his mouth and wish there was something that could be done to relieve this, but it is a side effect of the radiation that he will just have to deal with for now. His taste and hearing continue to be affected; he has also lost about twenty pounds. It is our hope that all will return to normal when this is over.

There are people selling tickets for a gun raffle for Scot, donation site for meals, or a few spots left for dates to sign up for meals, we would be forever grateful and will pay it forward when we can.

 

Faith, Hope, Love 🙏 

Hagen 5

Journal entry by Kathryn Hagen

Every week there seems to be a whole new battle to fight. In addition to the issues of last week… nausea, hiccups, snoring, constipation, etc. There are some things that are small like food tasting like soap to having no taste at all. Or bigger battles like when you cannot even swallow your drink of water in the morning because your throat either hurts too much to do it or the muscles just do not work that way anymore. It is hard for me to watch someone have difficulty doing something and not be able to fix it. I am a problem solver and this is a problem I am not able to fix. I am working on being an excellent cheerleader!

This past week has the treatments have taken their toll on Scot. He has lost about fifteen pounds and is “resting” more.  Like I stated above, his taste his being affected, which will only get worse from here on out (it was discussed that maybe he could switch to plastic silverware, but it does not appear that it is the silverware causing the issue). As Scot’s eating has become more difficult, he has not been able to maintain his weight and keep his energy level up. With this comes the decision the physicians have recommended that he focus on himself and healing, so this will be his last week of work until he is better.  Anyone that is familiar with Scot knows this was a very difficult decision as his work ethic is unlike no other. As a family, we need to support whatever was best for him to get well.

Foods that he once loved, he can barely tolerate and his appetite has declined significantly, to the point that he is now going to need to supplement his diet with Ensure and tube feedings. As I picked up his tube feeding supplies today, I thought about the countless ways that I could make his meals tolerable so that he could eat them. We have discussed many options, but if the pain is not tolerable and the function is not there, what more is there for me to do. The plan is to start the tube feedings twice a day tomorrow and work up to the full feedings.

Our family is definitely making some adjustments and there are times, when all of us just want to cry (there are some of us that have). With each new day, comes a new battle for us to fight. This also brings us one more day closer to the end of treatment. Two more chemotherapy treatments left and 22 radiation treatments left.

We would like to express our deepest thanks to Our Savior’s Lutheran Church and all of the people that came out to the Ice Cream Social last Thursday. It was so wonderful to feel the love and support of our friends and family. You have no idea how much that meant to us.

Also, thank you for those that have offered rides for our children to their events, appointments, jobs, etc. Thank you for those people that have called, text, or sent cards… your continued words of encouragement is what keeps us moving forward.

 

Love, Faith, Hope 🙏 

Hagen 5

 

Journal entry by Kathryn Hagen

June 5th was the first day of treatment. Our day started early in the morning as we needed to be there by 7:45 am. Not knowing really how our day was going to progress, it was a little nerve-wracking. I can tell you that they make you feel very welcome and at ease at the Rice Cancer Center, which is very helpful.

We started off the day with blood work, which mainly was all within normal ranges… GOOD NEWS! The next step was back to the waiting room to wait for our turn from radiation. Scot was very apprehensive about this, but all turned out. He even come out with this funky little snake skin pattern across his forehead J. I told him to watch out; he might be turning into a new superhero! We were then moved to a cozy room to spend the rest of our day waiting for fluids and chemotherapy infusions to be completed.

The chemo therapy process is very time consuming due to the fact that the Cisplatin dose is the highest dose that is given to patients receiving therapy. In order to receive this dose, your kidneys need to be functioning really well, hence the vast amount of fluids that they need to give Scot before they start the chemo and after they give him the chemo. The total run time of the process was approximately six hours from the time it was started to the time it was finished. Thankfully there will only be three doses of this, so we are 1/3 finished with chemotherapy treatments (we have to celebrate the small things)!

Scot has had four more radiation treatments, so that makes five radiation treatments completed. There will be a total of 33 radiation treatments, with the last one tentatively scheduled for July 20th. This will also be the last chemotherapy day, with the second chemotherapy day being June 25th. So we are 1/7th of the way done with radiation also. Celebrate the small successes. Scot will go Monday through Friday for radiation (except for July 4th) until treatment is completed. He will also be receiving fluid treatments at least twice a week, which is a two hour process in addition to the radiation (this might be increased based on labs or how he is feeling). 

Now to talk about the things that have changed so far. This has been an emotional roller coaster to say the least. Between the stress of the diagnosis and the treatments thus far, Scot’s memory is not what it should be. His taste buds have also started to change, with the most notable being that his water tastes like soap. He has found that if he has a Wintogreen mint, it makes it better. Night sweats, nausea, severe heartburn, ringing in his ears (hard of hearing- more so than what he had before!), some difficulty swallowing, foods don’t taste the same anymore, constipation… and this is just week one. I cannot wait to see what week 2 has in store for us as I love surprises.

There are many things that you do not think about until the bridge comes that you have to cross. Scot did not work last week and is only going to be working three 1/2 days this week. From there, we are not sure what is going to happen as he has to do what is best/safe for him and per recommendations from his doctors. We appreciate the offers of help and prayers. Keep them coming, you never know what we might need as we do not either, sometimes until the minute we need it. Whether you have offered rides for the kids or just an ear to listen, the meaning is the same. We feel the love!

 

Hope, Faith, Love 🙏 

Hagen 5

Journal entry by Kathryn Hagen

Scot had surgery today to put his port and G-tube in. I am happy to say that all went as planned and we were even able to attend the BOLD baseball game this evening and watch them win 😀 .

As there were no issues with today, we are moving on to the next step. Scot will start on Tuesday with chemotherapy and radiation, so this weekend he will be eating any crunchy food he can get his hands on. You know that you never crave things that you cannot have until you can’t have them. That will be tough for him, as he enjoys food… A LOT!

It will not be the toughest part for him, but he has a wonderful support system in place and we would like to take this time to thank some of those people who have stepped up. There are many people that have offered help, prayers, rides, etc. To be honest, we are overwhelmed with the support that we have received. It is humbling.

There is no way that we could remember everyone that has offered help, so I will not list them all, but make a general statement of thank you and know that we appreciate all of you. Do not think that your offers go unnoticed if we do not respond right away or at all. The information and coordination of schedules that we have managed to complete in the past month has been tremendous. Now that the journey is going to be running full force, we will be calling in those offers of help as the days turn into weeks.

Hope, Faith, Family

Love the Hagen 5

Journal entry by Kathryn Hagen

I have read plenty of these journal sites over the years, but never thought that I would need to write one of my own. The struggle is real and the power of prayer will overcome all.

From the beginning… Scot had a small lump in his neck that he had looked at by his physician in January of 2017 at his annual physical. The physician was not too concerned and felt that it was most likely an enlarged lymph node from some infection that just had not decreased in size. We had first noticed this lump on a family vacation in November of 2016. Fast forward to March of 2018.

The side of Scot’s neck seemed to be growing larger and when asked, he kept telling me that the doctor had looked at it and was not concerned. As we all know, a wife’s job is to nag until a husband gives in and that is what I did. Finally, in the middle of April, Scot relented and made an appointment for April 23, 2018.

At this appointment, Scot’s physician still was not really concerned and thought it was just an enlarged lymph node. He did order a CT scan, which was scheduled for the following day, just to be sure. When Scot came home and told me that night, I told him of my fears and we did discuss the possibilities and he still was optimistic and stated the doctor does not think it is anything.

Scot left that morning for work and his appointment and I told him to keep me posted and the day progressed as is any other day. Scot did get a call in the early afternoon that he needed to come to the clinic to get the results of the scan, when asked if he could wait until later in the day, he was told no. On his way, he text me and told me he would be calling me soon.

Shortly after that, he did call and handed the phone to the on call doctor to give us the dreaded news that Scot had a mass in his neck and that it was suspicious for metastasizing to his lymph nodes. She was also very concerned how close it was to his jugular vein and had a call out to the University of Minnesota Ear, Nose, and Throat Department to figure out the next step as she did not want him to leave the clinic without a plan. I told her I was on my way there.

This is where our journey began…

 

Hagen Family

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Site created on May 13, 2018

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