Update on Trent- we found out that another nerve may have been cut- his Vegas nerve which could be why he can't keep everything down and his voice sounds like an old man . He has to go in for more testing and surgeries..... Hold on tight, here we go again...
First test is next Thursday, it is during outpatient surgery so he will be drugged, which means I get to go hang out at the hospital. Now that I am done with school, I will have to find something else fun to do. He gets to have a small microchip put in to test the reflux and then he gets to swallow a tube and water at the same time... good luck with that. They are doing the test because he is going to have a Nissan, which means they will tie the top of the stomach around the esophagus , which will make it harder to throw up, but also harder to swallow, so if it isn't reflux caused by the surgery and is just from the vegas nerve cut, that would be horrific to do it because he wouldn't be able to swallow. If the vegas was cut that means his voice will never come back and he will have to get injections every three months until they can put a block in for a permanent solution. Fun times at the Coe house.
Saturday, March 22, 2014
Wednesday, March 12, 2014
Update
I am so sorry I have been such a slacker with keeping up! I have been busy trying to get my schooling in and those that know me, know how I have OCD and have to have it done early and perfect. Trent has been doing good considering. We have our team of doctors and Trent's case was presented in a meeting because some of the doctors are stumped. They don't know why this mass was growing outside of a capsule because usually with Castleman's it grows within one. For this reason they were debating whether or not to do radiation . We won't be doing chemo because the Doctor was able to get the mass and taking the phrenic nerve he couldn't see it spread anywhere else in the body. At this time it looks like we will just keep getting CT scans and making sure it doesn't come back. It's frustrating when its so rare that the doctors are printing things they have found off of google to us, that I have already researched. If it wasn't for Trent's nerve being cut I think he would be feeling fine. However, he can't eat much or he throws it all up. He coughs constantly and sounds like he has some sickness. I am sure when we go into public people stare at him as if he needs to wear a mask or something! It has been hard seeing him cough so hard he is throwing up, One night he wasn't stopping and just like when I hear my kids get sick I jump out of bed and am there rubbing their back telling them it's ok. I did the same to Trent and then asked him later if that bugged him that I was in there when he was puking up his guts. Let's just say I am the type of friend that would hold your hair back as you puke, I think I get that from when I was little and my parents would come in and help me and so I do that for my kids. Trent has started going back to work because quiet frankly, he has to and you know how he can be stubborn, but I appreciate him because I don't have a job and he is doing everything he can even in his sickness to support us. We are trying to find some medications that can help him so he can eat, he has lost over 30 pounds since his first surgery 7 weeks ago. This looks like it will be our new normal for awhile. We are so grateful for all the help we have received and all the prayers. Who knows what the future holds, we just hope it's each other.
Wednesday, February 19, 2014
Writing on this blog has made me start writing on my family one! It's nice to see people are still out there using the blogs.
Yesterday, Trent went in for surgery and once he was dressed and had the IV in, his dr told us they had ordered the wrong medication so that we would have to wait or reschedule in the next four weeks. We had gotten there at 6:30 a.m. and by 2:00 they took him back for the hour procedure. He did really well, and he isn't allowed to talk at all for a week. I gave him a bell to ring if he needs me, and many times he rings the crap out of it. I keep thinking he is trying to be funny, but then there are times he really needs me ASAP. Point is I need to tell him the story of the "Boy Who Cried Wolf." We are hoping this will be a temporary boost to help his vocal cord. If it works, then by the time it wears off we are hoping it made improvments, if not then we may do it again until the year is up and we can do something more permanent. We go in to find out if we just need to do petscans every six months to make sure this mass doesn't come back or if we need other treatments on Monday.
Yesterday, Trent went in for surgery and once he was dressed and had the IV in, his dr told us they had ordered the wrong medication so that we would have to wait or reschedule in the next four weeks. We had gotten there at 6:30 a.m. and by 2:00 they took him back for the hour procedure. He did really well, and he isn't allowed to talk at all for a week. I gave him a bell to ring if he needs me, and many times he rings the crap out of it. I keep thinking he is trying to be funny, but then there are times he really needs me ASAP. Point is I need to tell him the story of the "Boy Who Cried Wolf." We are hoping this will be a temporary boost to help his vocal cord. If it works, then by the time it wears off we are hoping it made improvments, if not then we may do it again until the year is up and we can do something more permanent. We go in to find out if we just need to do petscans every six months to make sure this mass doesn't come back or if we need other treatments on Monday.
Monday, February 17, 2014
Update
We now have a team of doctors working on Trent. I'm sure they are excited because its not everyday you get to work on someone rare;) jk. Anyways we do go in tomorrow to have a same day surgery to so a temp fix for his vocal cords. He still talks like a little old man, sounds like he has larengitis, and coughs so bad he pukes. He seriously sounds like he has some horrible flu bug but alas it isn't. Poor guy has lost 20 pounds already.
Thursday, February 6, 2014
The Voice
The last two days have been filled with doctor visits. We saw that one of Trent's vocal cords isn't moving at all so he will need to go in for another surgery to try to temporarily help it. In a year if its not fixed then we can do something more permanent. Thanks for all your prayers. We see the oncologist here in a few weeks, otherwise nothing has changed in what we know thus far.
Sunday, February 2, 2014
Rare creature
Update- We are still getting tests done, and seeing a bunch of different dr's this week so we don't have all the answers yet, but we found out Trent has something even more rare than thymoma . We are In the works of figuring out a treatment plan up at Huntsman Cancer Institute.
Friday, January 31, 2014
Trent has cancer. We find out more soon.
Today the anxiety has kicked in, and honestly I think a lot of it is due to the police officer that was killed here last night. Everywhere on my newsfeed I keep seeing this poor man and thinking about his family and I become obsessed and hope they are going to be ok. I can't watch the news ever because when I do I take the hardships to heart and I can't let it go. I empathize with them to a unhealthy degree, or in other words, I'm an empath. I can't even imagine what his wife and kids are going through right now. My heart aches. Even yesterday I was getting frustrated over stupid little things the kids were doing. When in reality, they were just being kids and I have to realize they miss their parents and are worried about their dad. They were cute to come help take care of trent. Faith kept saying she was going to take care of him. She laid by him, and the other kids kept checking in on him. Hannah helped give him his medications.
The dr, called and told us Trent has a cancer that is even more rare than Thymoma. We have to do more testing to find out what treatment he needs. The waiting game is the hardest. The dr. is still optimistic but I think it sucked that it wasn't what we were hoping for. This type can easily turn into non Hodgkin's lymphoma because it is part of the lymph nodes. That's usually just medical mumbo jumbo and it's easier for me to tell people "Yes, Trent has cancer, we find out if he needs treatment soon." that makes sense and that's all I ever should've said in the updates because I confuse the crap out of people otherwise lol.
On Tuesday we have to go get more testing, and see a respiratory therapist, and an ENT for his voice.
Trent is already bored so I told him we could play LAST WORD. If looks could kill.....
In the meantime I am just going to stuff my face with m & m's... until I found that someone ate all of them except the red ones. (I am allergic to the red ones) someone's going to get their butt kicked. jk
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On Tuesday we have to go get more testing, and see a respiratory therapist, and an ENT for his voice.
Trent is already bored so I told him we could play LAST WORD. If looks could kill.....
In the meantime I am just going to stuff my face with m & m's... until I found that someone ate all of them except the red ones. (I am allergic to the red ones) someone's going to get their butt kicked. jk
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Wednesday, January 29, 2014
Laughter- The best medication.
I know this is going to be a jumpy post, so I am trying to write down all my thoughts at once.. bare with me.
During the hospital stay, I was trying to get Trent ready to go home. I had helped him put his clothes on after the ugly "I C U" gown ( I saw a funny comic that had a man walking down the hall with the back of his gown wide open and his backside showing. The nurse said "They don't call it "ICU" (I see you) for nothing.") and was tying his shoes. I told Trent that I was practicing taking care of him in this way so when he is 85 I will know how. He then told me (in a raspy 85 year old whisper, because that's the only voice he has as of now) that he married me because I was a younger woman and I would be able to take care of him. I started laughing, and he started laughing. (His laugh sounded so funny because its barley there and sounds more like a cat coughing up a hair ball.) I started laughing harder because of his laugh, and then he started laughing & choking and couldn't get air. His dr came in and saw us both trying to giggle and asked what on earth he had missed.
Tonight we were watching a movie, that made me laugh, which in turn made Trent start to laugh again, which caused me to laugh harder. I tried not to laugh too hard because I knew he was going to start choking again! I have to tell him "You're ok, breathe, I'm here. breathe." like I do with my kids. This care taking reminds me of this his example, where hearing his voice telling me it's all ok was soothing to me. Also, when I had to be on medication after a surgery, Trent was so cute to write on the mirror when my next dose of meds were due, so he gave me the idea to do it for him and thank goodness because I don't remember anything anymore and would be a crappy nurse!
Now, I'm going to be blunt and I'm going to be honest here. I love Trent so much, and he has always been there for me. When I had surgery a couple years ago, he was such a great caretaker. I see people tell me how surprised they are that I am handling this so well. It's because of trial and error. Honestly, it's because Trent and I have been through hell a couple times before and each time we made it back. We have learned lessons when our love had to be tested, and allowed us to realize that looking at the positive and instead of saying "Why me?" we say "Why not?" We have learned that we would rather enjoy our trials together, instead of cry through them alone. We can both be stubborn and I know I can be headstrong, in fact he loving calls me his "brat" but I know that I can have ocd's and when I want things done, and they have to be done in my way and perfect. However, there is many things trent has shown me through example, but the biggest one is he has been my caretaker in the past years through hard times, and during times where I mentally and emotionally couldn't handle it anymore. I don't know which is harder, the one who is hurting through pains whether physical or emotional, or the caretaker. He always writes me letters for Christmas, because I love his letters, and many times he tells me how strong I am and how he is amazed at the patience I have. But to be honest Trent, if you are reading this, you are strong, you have patience. We just show our strength and patience in other ways and we balance each other out. I am in awe at how spiritually everyone's prayers are carrying us. If I think about it, it's as if unseen angels are answering your prayers for us, and they aren't allowing me to swallow fear in my soul, but instead fills me back up with peace, hope, joy, and laughter. I have seen so much kindness and love, and I know that this is the reason for life, to learn to love and give unconditionally like the teacher our Savior.
If cancer had to hit anyone, I would rather it hit us so we can deal with it, instead of seeing others suffer. We can and we will beat this. Whatever life has to offer us, we will endure. It reminds me of a time Trent and I went swimming at Lagoon, and we both went down a waterslide. We got separated half way down. At the end of the slide Trent was already at the bottom waiting for me, and helped grab me out as we both were soaking and laughing. In life we are going to go through the trials of hardship like I said in the first post of "The Oar," yet in the end after the storm rolls along and we are both soaking wet, we will be there to grasp one another's hand and smile at each other, and laugh at how scary, yet wild the ride of life was. If and when something happens to one of us, we will know the other will be waiting for us with open arms to reunite. In the meantime, we need to enjoy EVERY ride that comes and never forget to laugh.
I changed Trent's dressing and told him it look like a HUGE vampire got him!
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During the hospital stay, I was trying to get Trent ready to go home. I had helped him put his clothes on after the ugly "I C U" gown ( I saw a funny comic that had a man walking down the hall with the back of his gown wide open and his backside showing. The nurse said "They don't call it "ICU" (I see you) for nothing.") and was tying his shoes. I told Trent that I was practicing taking care of him in this way so when he is 85 I will know how. He then told me (in a raspy 85 year old whisper, because that's the only voice he has as of now) that he married me because I was a younger woman and I would be able to take care of him. I started laughing, and he started laughing. (His laugh sounded so funny because its barley there and sounds more like a cat coughing up a hair ball.) I started laughing harder because of his laugh, and then he started laughing & choking and couldn't get air. His dr came in and saw us both trying to giggle and asked what on earth he had missed.
Tonight we were watching a movie, that made me laugh, which in turn made Trent start to laugh again, which caused me to laugh harder. I tried not to laugh too hard because I knew he was going to start choking again! I have to tell him "You're ok, breathe, I'm here. breathe." like I do with my kids. This care taking reminds me of this his example, where hearing his voice telling me it's all ok was soothing to me. Also, when I had to be on medication after a surgery, Trent was so cute to write on the mirror when my next dose of meds were due, so he gave me the idea to do it for him and thank goodness because I don't remember anything anymore and would be a crappy nurse!
Now, I'm going to be blunt and I'm going to be honest here. I love Trent so much, and he has always been there for me. When I had surgery a couple years ago, he was such a great caretaker. I see people tell me how surprised they are that I am handling this so well. It's because of trial and error. Honestly, it's because Trent and I have been through hell a couple times before and each time we made it back. We have learned lessons when our love had to be tested, and allowed us to realize that looking at the positive and instead of saying "Why me?" we say "Why not?" We have learned that we would rather enjoy our trials together, instead of cry through them alone. We can both be stubborn and I know I can be headstrong, in fact he loving calls me his "brat" but I know that I can have ocd's and when I want things done, and they have to be done in my way and perfect. However, there is many things trent has shown me through example, but the biggest one is he has been my caretaker in the past years through hard times, and during times where I mentally and emotionally couldn't handle it anymore. I don't know which is harder, the one who is hurting through pains whether physical or emotional, or the caretaker. He always writes me letters for Christmas, because I love his letters, and many times he tells me how strong I am and how he is amazed at the patience I have. But to be honest Trent, if you are reading this, you are strong, you have patience. We just show our strength and patience in other ways and we balance each other out. I am in awe at how spiritually everyone's prayers are carrying us. If I think about it, it's as if unseen angels are answering your prayers for us, and they aren't allowing me to swallow fear in my soul, but instead fills me back up with peace, hope, joy, and laughter. I have seen so much kindness and love, and I know that this is the reason for life, to learn to love and give unconditionally like the teacher our Savior.
I changed Trent's dressing and told him it look like a HUGE vampire got him!
Hospital Stay
Trent has done really well, we were able to leave a day early (even though he could've stayed longer, he was antsy to get out) The dr wanted him to go home with a CPAP which issued to breath for sleep apnea, but the insurance was fighting us on it. Trent is on oxygen and has to go back in for a checkup on Friday and then on Tuesday. The dr said he didn't think he hit a cord for his voice box, but if his voice doesn't return to normal he will need to see whats going on. The dr. thinks its just from having a tube down his throat. While in the hospital, Trent's blood pressure and oxygen levels would go off because one was too high and the other too low.
For the most part, Trent had awesome nurses. However there was one, who was telling him how he needed to exercise and so forth,(she looked like she was a very huge vegetarian and worked out a lot.) I felt like telling her that the reason he was in here wasn't due to his lifestyle, but hey it's always good advice I suppose. She took out his catheter and chest tube, and didn't even tell him to blow out and breathe, she just ripped that sucker right out. It hurt Trent and I noticed she looked up on the Tv and saw a horse who was hurt and she said "Ohhh that poor horse!!! " I thought it was hilarious. Trent, not so much. Trent said the chest tube hurt more than the incision, which is what the dr said would happen. We love our dr, he is so awesome and takes his time with us and has shown us pictures of the CT scan. We feel like he is our friend. He even took pictures of the tumor for trent. What I thought was funny is the only reason he let Trent go home early was because he knew that I wouldn't let anything get out of hand and that I would call him at any time to let him know if something was wrong with Trent. He knew that I would call before anything got out of control. I wasn't sure if I were to be proud or offended. Haha. His office knows me by name even when I call. I guess I am a little headstrong! Trent and I tease, that he would hate me if I was his boss. I told him "are you sure you want to come home? You will have me as your nurse, and you know how I have to get things done perfectly and ocd about it." meaning he would HAVE to get up, and breathe using his treatments regardless of what he wants. When it comes to school, work, and even church assignments, I ams someone that has to have it done pronto.
Some of Trent's sisters came to visit, and so did the bishop. It was nice to see people. I think I gained 50 pounds no joke, thanks to the cold stone there.
So many people have helped us by calling, donating money, babysitting my kids when they are sick and up all night (thanks), deep cleaning my home, buying a chair for Trent to sit in, bringing meals in , my RS president who came over for an hour to wait for the oxygen guy to come and he never showed. All these things may seem small to others, but to us it was HUGE. It's hard for me to ask for help, and so even if I ask a little, it is a lot for me. I was surprised how I came home to groceries, new bedding, M&M's (which may seem small, but again brought a smile to my face) and so much more. Thank you for everything to everyone. I know I've left people out and I have lost my mind and can't remember things, but I know after I write this I will remember, and I want you all to know how much just thoughts and prayers have been with us are appreciated. I can feel the prayers working, I have been extremely calm through all of this and I normally would get anxiety but I haven't. So thank you for allowing me to vent and as of right now trent is doing great, he is laying here with the oxygen . It hurts to cough but he is doing good. Because of the nerve cut he may need another surgery, and because the voice cord came close, we are praying his voice will come back, and that this mass is only Thymoma, and not worse. Thanks! Below is his cancer mass:
For the most part, Trent had awesome nurses. However there was one, who was telling him how he needed to exercise and so forth,(she looked like she was a very huge vegetarian and worked out a lot.) I felt like telling her that the reason he was in here wasn't due to his lifestyle, but hey it's always good advice I suppose. She took out his catheter and chest tube, and didn't even tell him to blow out and breathe, she just ripped that sucker right out. It hurt Trent and I noticed she looked up on the Tv and saw a horse who was hurt and she said "Ohhh that poor horse!!! " I thought it was hilarious. Trent, not so much. Trent said the chest tube hurt more than the incision, which is what the dr said would happen. We love our dr, he is so awesome and takes his time with us and has shown us pictures of the CT scan. We feel like he is our friend. He even took pictures of the tumor for trent. What I thought was funny is the only reason he let Trent go home early was because he knew that I wouldn't let anything get out of hand and that I would call him at any time to let him know if something was wrong with Trent. He knew that I would call before anything got out of control. I wasn't sure if I were to be proud or offended. Haha. His office knows me by name even when I call. I guess I am a little headstrong! Trent and I tease, that he would hate me if I was his boss. I told him "are you sure you want to come home? You will have me as your nurse, and you know how I have to get things done perfectly and ocd about it." meaning he would HAVE to get up, and breathe using his treatments regardless of what he wants. When it comes to school, work, and even church assignments, I ams someone that has to have it done pronto.
Some of Trent's sisters came to visit, and so did the bishop. It was nice to see people. I think I gained 50 pounds no joke, thanks to the cold stone there.
So many people have helped us by calling, donating money, babysitting my kids when they are sick and up all night (thanks), deep cleaning my home, buying a chair for Trent to sit in, bringing meals in , my RS president who came over for an hour to wait for the oxygen guy to come and he never showed. All these things may seem small to others, but to us it was HUGE. It's hard for me to ask for help, and so even if I ask a little, it is a lot for me. I was surprised how I came home to groceries, new bedding, M&M's (which may seem small, but again brought a smile to my face) and so much more. Thank you for everything to everyone. I know I've left people out and I have lost my mind and can't remember things, but I know after I write this I will remember, and I want you all to know how much just thoughts and prayers have been with us are appreciated. I can feel the prayers working, I have been extremely calm through all of this and I normally would get anxiety but I haven't. So thank you for allowing me to vent and as of right now trent is doing great, he is laying here with the oxygen . It hurts to cough but he is doing good. Because of the nerve cut he may need another surgery, and because the voice cord came close, we are praying his voice will come back, and that this mass is only Thymoma, and not worse. Thanks! Below is his cancer mass:
Saturday, January 25, 2014
Trent had a rough day today, he would just be Fallin asleep and they would come in to get his breathing treatments going. He has to learn how to use his diaphragm again with his muscles since he can't with the nerve taken us . He can't even cough and he is in a lot of pain thanks to the chest tube sticking out from his ribs. Poor guy was clammy before I had to leave and still on oxygen. Tomorrow they might get him to walk. They had him sit in a chair for two hours which was huge. I'm not sure if they will keep him in ICU longer than tomorrow or not. At this point he hasn't walked so we will see what tomorrow brings. He can't talk either because it hurts too much. I see now why the dr didn't want that nerve taken out, it's a big deal. It's interesting something so small helps us so much. He is strong though! He can do this!
Surgery
On wed night Trent and I went out for ice cream s o he could have one last treat before surgery. However, I think he might get sick of ice cream after his stay:) . I hadn't broken down yet, I was being so strong, or so I thought. It's scary how much Trent knows me, sometimes he knows me better than I know myself. He talked to me about how I have been trying to be strong, but instead I was building up my walls so I could prepare myself to not get hurt. It's true, when I know someone is going to leave me or die my protective walls go up. I have these so that I can't get hurt. I'm not sure why I do it, and I know that by doing it I am missing out on the time I can have with those that have pass on. I'm in no way saying Trent is going to leave me lol, I am just saying if I prepared for the worst I would be protected. He knew what I was doing, I was OCD with homework, cleaning the house, and trying to get all his appts in! I realized what I was doing and he told me "Jamie, I just want you to say "This sucks, but we will be ok." At that point I grabbed his hands and looked in his eyes and said "Trent, this SUCKS, but we will get through this!" my lips trembled as I said this, and I started to cry a few tears. I had to look at a poster on the wall and tell myself to stop crying, that I was ok and I was in public and I hate crying in public! I haven't always been like this and I am not sure why I am now, but actually letting a few tears fall was a great stress reliever. During war time when cities would build protective walls up, there was usually somewhere a weak point in the wall where others could get in. Trent knows how to get in through the protective barriers I set up and to the heart of me. I love him more for this.
I had prepared myself to break down when I saw him after surgery. I must be feeling the prayers of everyone, because I have been calm and so peaceful. I think everyone is expecting me to break down and throw a tantrum on the floor, but I feel serenity, a sense of calm, and love surrounding us. We checked in on Thursday for his testing and then on Friday he went in around ten, and surgery started at almost noon. The dr came out around 2:30 and told me that the mass was actually attached to a phrenic nerve which helps the diaphragm so you can breath. He wanted to make sure it wasn't another tupe of cancer, but he had to be careful how he biopsied it so the cancer didn't spread. They did a quick educated guess of the biopsy and it was what we thought- Thymus cancer. We just don't know which one yet. We are still praying it's Thymoma and not the other one. The other one would turn us down for the worst and not good. We won't know until two wweeks of the results but the dr is optimistic that is the cancer we are dealing with. He told me that if he can't save this nerve, Trent could have shortness of breath and if that's the case he would have to come back for another surgery. We are hoping that through breathing treatments his body can compensate the loss of that nerve and since he is young, he will be able to be ok. I know the dr said he wouldn't be running any marathons, so good thing Trent hates running:( In the end, the dr couldn't save the nerve and it came out with the mass. The mass was a little bigger than he expected it would be, and after the biopsy we will know if it spread. We will come up with a treatment plan once we find out what exactly we are dealing with.
Trent came out of surgery and is in the ICU, when I went to see him I was expecting to cry, but once again, I think the prayers of others have been carrying me, and many unseen loved ones are helping Trent and I. I sat with him and rubbed his hand and we have this thing where we squeeze each other's hand three times as a "I LOVE YOU" signal. He squeezed my hand three times. I knew exactly what he was doing, and I told him how proud I was of him, how great he was doing, and I loved him too. He is exhausted this morning, since they woke him up every hour and it still hurts, regardless of pain meds since this was a major surgery. It hurts to talk to. I am writing this sitting at the side of his bed and watching him sleep. Here is a picture before/after surgery. Trent wanted the surgeon to record the surgery.... the surgeon did show me pictures of this mass. The surgeon is such a great dr and has helped us so much and showed us much concern.
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I had prepared myself to break down when I saw him after surgery. I must be feeling the prayers of everyone, because I have been calm and so peaceful. I think everyone is expecting me to break down and throw a tantrum on the floor, but I feel serenity, a sense of calm, and love surrounding us. We checked in on Thursday for his testing and then on Friday he went in around ten, and surgery started at almost noon. The dr came out around 2:30 and told me that the mass was actually attached to a phrenic nerve which helps the diaphragm so you can breath. He wanted to make sure it wasn't another tupe of cancer, but he had to be careful how he biopsied it so the cancer didn't spread. They did a quick educated guess of the biopsy and it was what we thought- Thymus cancer. We just don't know which one yet. We are still praying it's Thymoma and not the other one. The other one would turn us down for the worst and not good. We won't know until two wweeks of the results but the dr is optimistic that is the cancer we are dealing with. He told me that if he can't save this nerve, Trent could have shortness of breath and if that's the case he would have to come back for another surgery. We are hoping that through breathing treatments his body can compensate the loss of that nerve and since he is young, he will be able to be ok. I know the dr said he wouldn't be running any marathons, so good thing Trent hates running:( In the end, the dr couldn't save the nerve and it came out with the mass. The mass was a little bigger than he expected it would be, and after the biopsy we will know if it spread. We will come up with a treatment plan once we find out what exactly we are dealing with.
Trent came out of surgery and is in the ICU, when I went to see him I was expecting to cry, but once again, I think the prayers of others have been carrying me, and many unseen loved ones are helping Trent and I. I sat with him and rubbed his hand and we have this thing where we squeeze each other's hand three times as a "I LOVE YOU" signal. He squeezed my hand three times. I knew exactly what he was doing, and I told him how proud I was of him, how great he was doing, and I loved him too. He is exhausted this morning, since they woke him up every hour and it still hurts, regardless of pain meds since this was a major surgery. It hurts to talk to. I am writing this sitting at the side of his bed and watching him sleep. Here is a picture before/after surgery. Trent wanted the surgeon to record the surgery.... the surgeon did show me pictures of this mass. The surgeon is such a great dr and has helped us so much and showed us much concern.
Tuesday, January 21, 2014
We found out that Trent is for sure going to have surgery on Friday for the cancerous mass..... (They knew the mass was cancer but were worried that the thyroid could possibly be as well and so we couldn't do surgery until we found that out and his hormone levels were normal) we can do it because we found out that the nodules on his thyroid are benign, which means we won't have two different cancers. ( the dr didn't think the thyroid was cancer as well, but had to make sure) thanks for all your prayers and we hope after two weeks we will know when/ if he needs chemo and radiation.
Saturday, January 18, 2014
The Calm Before the Storm
Where do I begin? I have been trying to stay strong and I'm doing pretty well actually because this is the calm before the storm. I really have no idea what we are getting into. I just know it will be a journey. I'm amazed and in awe at how many people have asked how to help, at how many friends and loved ones have come up with ideas to raise money. Of course I always hate accepting things from people because I would rather be giving than receiving, but it has been so humbling. My friend set up this account so people could donate - http://www.gofundme.com/6acc5s'
and every time I see someone donate my heart basks in gratitude.
and every time I see someone donate my heart basks in gratitude.
I'm amazed at the generosity of people. Even just feeling of thoughts and prayers that others have been doing I am able to feel.
I am in debt to my Father on Heaven and all my loved ones.
I was so stressed and trying to get the kids to clean and thinking of everything I needed to get done for school that I started to get raunchy with them. I finally sat on the floor in my bedroom and told them to
come sit with me.I told them that I would need their help and them to be extra good, I told them
that their dad has cancer. Faith asked if he would die, and I had to explain that he would probably be ok, he will be sick and some people
that their dad has cancer. Faith asked if he would die, and I had to explain that he would probably be ok, he will be sick and some people
have died from cancer but we are going to be ok and they are too young to need to
carry that on their shoulders. Hannah told me she would watch the kids so I could get my schooling done. She said she wanted to make cookies and sell them for Trent.
carry that on their shoulders. Hannah told me she would watch the kids so I could get my schooling done. She said she wanted to make cookies and sell them for Trent.
I have awesome kids. Austin's teacher texted, saying she was sorry to hear that Trent had cancer. Austin told her the other day. "My dad has cancer." Teacher-"what kind?" Austin-"I don't know, I just know its
cancer." Hannah is doing an autobiography in class and I went to do hours at the school for one of my classes
and noticed her timeline. It said "born 2003-------2014-found out dad has cancer" it's still surreal for us and
we are in denial and shock. When people ask Trent how he is doing he says good, because at this point he doesn't feel much. We are in high spirits and know that whatever lies ahead, we will be ok, thanks to all the
love and support we feel.
we are in denial and shock. When people ask Trent how he is doing he says good, because at this point he doesn't feel much. We are in high spirits and know that whatever lies ahead, we will be ok, thanks to all the
love and support we feel.
Tuesday, January 14, 2014
More waiting....
Today we went to the dr to find out more info. Trent has an elevated hormone level so we need to test to make sure it isn't elevated still, otherwise we will do chemo and radiation first to try to shrink the mass. I'm praying we can just take out the mass without having to do that. The reason why we wouldn't be able to take it out right away is because a risk of stroke. The dr. told us he thinks the cancer is Thymoma, but there is also another type of Thymus cancer that is "bad". We again are hoping it is Thymoma! Once we biopsy that we can find out how serious this cancer is and come up with a treatment plan. The dr had written down everything to explain to us on the paper that covers the bed and so I took home the large paper and folded it up so I could remember what everything was called. Trent thought I was crazy, and at one point it fell out in the hospital with my debit card! I found it and then by the time I got home, it had fallen out again.
At the biopsy of the Thyroid, they stuck a needle in to get some cells. If these come back cancerous (It would be a different cancer, meaning he has TWO types of cancer) then we will have to go back to the specialist and we may have to have two different types of surgery. The dr who did the biopsy asked me "You let him go out of the house looking like this?" and we saw Trent had two different shoes on. We all laughed. Of course Trent blamed me because he said he was trying to ask which shoe looked better, and I didn't hear him. Right now we are waiting to hear back about his hormone level, and biopsy of his thyroid. If all goes well we can continue with our plan of surgery!
Another funny thing I have noticed is how many old men must have been sailors in their early life. Because I haven't heard so much swearing from an old man before. First Trent was playing peek a boo with Hope in this little locker and some old man yelled "WILL YOU STOP THAT? IT'S SO G*D D@** annoying." Trent was taken back a bit and said " Playing with my daughter is annoying?" Old Man- "We are in a hospital, show some curtsy." (we were in the radiology waiting room, not a surgical waiting room. Trent wanted to say " Hey bud, I'm sorry if you got bad news but so did I, I HAVE CANCER." instead he said "Have some respect." I was about to step in and tell everyone to calm down. Trent was just waiting for the old man to say something lol. Then today in the elevator Trent pushed the second floor, and the first floor for another old man. This old man said "Where the hell are we going?" I replied "For a ride." At that point I thought it would be funny to hit all the buttons like Buddy the Elf, but I decided not to. :)
At the biopsy of the Thyroid, they stuck a needle in to get some cells. If these come back cancerous (It would be a different cancer, meaning he has TWO types of cancer) then we will have to go back to the specialist and we may have to have two different types of surgery. The dr who did the biopsy asked me "You let him go out of the house looking like this?" and we saw Trent had two different shoes on. We all laughed. Of course Trent blamed me because he said he was trying to ask which shoe looked better, and I didn't hear him. Right now we are waiting to hear back about his hormone level, and biopsy of his thyroid. If all goes well we can continue with our plan of surgery!
Another funny thing I have noticed is how many old men must have been sailors in their early life. Because I haven't heard so much swearing from an old man before. First Trent was playing peek a boo with Hope in this little locker and some old man yelled "WILL YOU STOP THAT? IT'S SO G*D D@** annoying." Trent was taken back a bit and said " Playing with my daughter is annoying?" Old Man- "We are in a hospital, show some curtsy." (we were in the radiology waiting room, not a surgical waiting room. Trent wanted to say " Hey bud, I'm sorry if you got bad news but so did I, I HAVE CANCER." instead he said "Have some respect." I was about to step in and tell everyone to calm down. Trent was just waiting for the old man to say something lol. Then today in the elevator Trent pushed the second floor, and the first floor for another old man. This old man said "Where the hell are we going?" I replied "For a ride." At that point I thought it would be funny to hit all the buttons like Buddy the Elf, but I decided not to. :)
Monday, January 13, 2014
My worst fears.
I am someone that is very sensitive when it comes to others emotions. I have sensed when there is change in the air. I won't go into details on this because A. we don't have time, and B. Some are too personal and are wonderful moments in my life that I hold dear.
My worst fear is abandonment. I have always told Trent - You better not ever leave me. He would always hold me and tell me "I'm not going anywhere. If anything you will go first with all your health problems." (I'm not writing this by saying anything that bad is going to happen.) I saw a book that I had to laugh at because it fits for Trent and I . It said "If you die from cancer, I am going to kill you." It has been interesting to talk about "Worse Case Scenario" and talk about funerals, who would talk and so on. We talked about what we want our kids to do in the future, finances, wills, power of attorneys, and life insurance. I think it's important to be prepared because something could even happen to me tomorrow. I am the type of person that has to be prepared. I want to know so I don't get a surprise when I least expect it. I hate the unknown........
Trent found out that he had high blood pressure this year. On Thanksgiving he had complained that his heart was hurting. Trent never complains. That is more of my department (yes Trent I admit it.) I knew something wasn't right if he kept talking about it. I was talking to my mom and she had said she saw a sign about a heartscan for $69 and you don't need a dr order. I was thinking maybe Trent had a blockage due to other signs he had. I paid the money and told Trent to go get it done. Of course Trent thought it was a waste of money and to get our money back because he didn't have time to go in. I tried to get the money back, but I couldn't. I told Trent he didn't have a choice, he had to go do it! He was told he would get results back in a week or so.
The next day a cardiologist called to tell Trent he had saw an abnormality, but he couldn't see all of it and Trent needed to come back in to get a CT Scan. Trent asked if he could wait, but the Cardiologist said "No." We had to come up with money and I wasn't sure how we were going to. We didn't have insurance until Jan. 1. God really does work through people and it has been hard and humbling for me to accept. We had enough money for the CT Scan and the cardiologist called back to say that there was a nodule in his thyroid, and a big mass above his lung. The cardiologist wiped his hands clean and said he didn't know what to do since this wasn't his field, and Trent needed to go back to his family dr.
Trent decided he wanted to wait to get insurance for any more tests, A. we didn't have a choice, and B. He didn't want his Christmas ruined. I had been doing a lot of research based off the medical information my sister (who is a nurse ) and brother (who is a resident going into orthopedics) and was able to be prepared to understand the medical terms when I heard them. I thought he was going to have Lymphoma and was hoping for Hodgkin's which was less risky than Non. We found a specialist and we were able to see the CT scan. Trent has a huge mass with nodules around it. He also has Two big nodules in his thyroid. The result said it could be lymphoma, but it looked like Thymoma. Thymoma is a rare cancer of the Thymus. I asked which was worse, the dr sad it was about the same. He told us that no matter what, that mass had to come out. Trent would be in ICU for hours and the hospital for 4/5 days, off work for 6 weeks. He won't be able to lift Hope, and that one will be hard because she loves her dad. The specialist made Trent get many tests done, and the Pet scan(not to be confused with a CaTscan) is something where he drank radioactive sugar. If it's cancer, the cells will consume it and light up in the scan. Trent's mass consumed it. We will have a biopsy after the mass is taken out. The Specialist said he thinks his thyroid is a whole different issue and we need to get it biopsied to know what we are working with. What are the odds if you were to have two types of cancer? We have to do that soon and we will find out more. Once we know more we will know of a treatment plan (chemo/radiation).
People have been asking how I have been doing. First off Trent doesn't talk about it, he deals with it by joking. When his mom died he was comforting me and I kept telling him I should be doing the comforting. He deals with it in a different way than I would. However, that being said I had prepared myself so I am doing ok. Trent wants me to set up the appt's and tell everyone because I think he doesn't want to keep talking about it. All he says is "It sucks." I am working off my anxiety and stress to get his appts ready and I decided to go to school full time. I focus on that so I don't break down. As of now we are both optimistic and ok. I'm worried it's going to be really hard after surgery trying to keep kids off him, and being able to handle it all while trying to get my degree so I can have something to fall back on if needs be. I know Trent is worried about finances and sometimes it drives me crazy because I want to get him in and get all the testing done ASAP, but he has to find time during work, which I guess is understandable :) We find out more on his thyroid next week, and on Jan23 we go in for checkin for his surgery on Jan 24.
My worst fear is abandonment. I have always told Trent - You better not ever leave me. He would always hold me and tell me "I'm not going anywhere. If anything you will go first with all your health problems." (I'm not writing this by saying anything that bad is going to happen.) I saw a book that I had to laugh at because it fits for Trent and I . It said "If you die from cancer, I am going to kill you." It has been interesting to talk about "Worse Case Scenario" and talk about funerals, who would talk and so on. We talked about what we want our kids to do in the future, finances, wills, power of attorneys, and life insurance. I think it's important to be prepared because something could even happen to me tomorrow. I am the type of person that has to be prepared. I want to know so I don't get a surprise when I least expect it. I hate the unknown........
Trent found out that he had high blood pressure this year. On Thanksgiving he had complained that his heart was hurting. Trent never complains. That is more of my department (yes Trent I admit it.) I knew something wasn't right if he kept talking about it. I was talking to my mom and she had said she saw a sign about a heartscan for $69 and you don't need a dr order. I was thinking maybe Trent had a blockage due to other signs he had. I paid the money and told Trent to go get it done. Of course Trent thought it was a waste of money and to get our money back because he didn't have time to go in. I tried to get the money back, but I couldn't. I told Trent he didn't have a choice, he had to go do it! He was told he would get results back in a week or so.
The next day a cardiologist called to tell Trent he had saw an abnormality, but he couldn't see all of it and Trent needed to come back in to get a CT Scan. Trent asked if he could wait, but the Cardiologist said "No." We had to come up with money and I wasn't sure how we were going to. We didn't have insurance until Jan. 1. God really does work through people and it has been hard and humbling for me to accept. We had enough money for the CT Scan and the cardiologist called back to say that there was a nodule in his thyroid, and a big mass above his lung. The cardiologist wiped his hands clean and said he didn't know what to do since this wasn't his field, and Trent needed to go back to his family dr.
Trent decided he wanted to wait to get insurance for any more tests, A. we didn't have a choice, and B. He didn't want his Christmas ruined. I had been doing a lot of research based off the medical information my sister (who is a nurse ) and brother (who is a resident going into orthopedics) and was able to be prepared to understand the medical terms when I heard them. I thought he was going to have Lymphoma and was hoping for Hodgkin's which was less risky than Non. We found a specialist and we were able to see the CT scan. Trent has a huge mass with nodules around it. He also has Two big nodules in his thyroid. The result said it could be lymphoma, but it looked like Thymoma. Thymoma is a rare cancer of the Thymus. I asked which was worse, the dr sad it was about the same. He told us that no matter what, that mass had to come out. Trent would be in ICU for hours and the hospital for 4/5 days, off work for 6 weeks. He won't be able to lift Hope, and that one will be hard because she loves her dad. The specialist made Trent get many tests done, and the Pet scan(not to be confused with a CaTscan) is something where he drank radioactive sugar. If it's cancer, the cells will consume it and light up in the scan. Trent's mass consumed it. We will have a biopsy after the mass is taken out. The Specialist said he thinks his thyroid is a whole different issue and we need to get it biopsied to know what we are working with. What are the odds if you were to have two types of cancer? We have to do that soon and we will find out more. Once we know more we will know of a treatment plan (chemo/radiation).
People have been asking how I have been doing. First off Trent doesn't talk about it, he deals with it by joking. When his mom died he was comforting me and I kept telling him I should be doing the comforting. He deals with it in a different way than I would. However, that being said I had prepared myself so I am doing ok. Trent wants me to set up the appt's and tell everyone because I think he doesn't want to keep talking about it. All he says is "It sucks." I am working off my anxiety and stress to get his appts ready and I decided to go to school full time. I focus on that so I don't break down. As of now we are both optimistic and ok. I'm worried it's going to be really hard after surgery trying to keep kids off him, and being able to handle it all while trying to get my degree so I can have something to fall back on if needs be. I know Trent is worried about finances and sometimes it drives me crazy because I want to get him in and get all the testing done ASAP, but he has to find time during work, which I guess is understandable :) We find out more on his thyroid next week, and on Jan23 we go in for checkin for his surgery on Jan 24.
"The Oar"
Before I can go on to talk about how everything has happened with Trent thus far, I am going to share a thought that came to me at a time in my life when I and others needed to hear it most. I wanted to write a book on the subject, but never got around to it. (I have shared it before in a Christmas letter once)
"One day I pictured myself in a canoe simply wandering down the water, when I came to a fork in the river. I looked and saw that one path was smooth and calm and I knew the water would've been easy to maneuver down. I knew I would be safe. The other path looked dangerous with white water waves, and in some areas dark from the shadows of trees and large rocks. I couldn't see past the danger of it. Without a doubt I decided to paddle towards the calm path Yet as I was paddling, I heard my name being called. I heard this voice say "Jamie, do you trust me? Do you trust me Jamie? If you trust me, put the oar in the boat and let me lead you." I knew it was God, yet at the same time I wasn't sure what to do. I was scared. I was scared he was going to lead me down the path that was too dangerous, dark, and unknown. I heard the voice again "Put the oar in the boat, and let me lead you." I decided to put the oar in the boat with reluctance. I suddenly felt the boat move towards the unsafe path. I was lead down the river of white rapids with water splashing in my face making it hard to breath. I was white knuckling by holding onto my boat, afraid I was going to fall out and drown. At times I couldn't even see what was in front of me because of the darkness and the rocking of the boat. I felt a wide range of emotions from fear, to excitement, to yelling for it to stop. After I had taken all that I thought I could handle, the river didn't care and wouldn't stop. I had no choice but to keep holding on. Finally when the shadows and clouds passed, and the water started to calm, the sun out, I was able to look up and see a calm, serene lake in front of me. I had made it. I looked behind me and couldn't believe I had made it through the roughness of the water. I then looked down the path where I could see the path I almost took, and I saw at the end was a steep, deadly waterfall. " The moral of my story is that in life we are here to learn. Life isn't always going to be easy, in fact I believe we came here to go through as much as we could, so we could grow. The calm path was in a way damned because I couldn't progress and in the end wouldn't have grown, or appreciated what I went through. The path the Lord had taken me on was not a fun one at times. Just like a blacksmith has to put his tool under pressure of heat in order to mold it into the way he wants, God was able to take me on the path of life that would do me the most good and make me who I am today. Yet at the same time, before I came to this earth, I knew I was one that "Shouted for Joy," I knew I had seen parts of my life before I had agreed to come here. I knew I was going to go through hard times, but all in all my life would bring me happiness, love, and compassion. I knew I wanted to be here and couldn't wait.
When I shared this story with a group of women who helped me in my life, they had bought us each a oar key chain to remember to enjoy the journey, because while it may be scary and dark at times, in the end everything will be ok. Life takes all sorts of turns and I think Trent and I have had our fair share of turns. However, each time we go through a struggle or hardship, we are able to become better people and learn. We may feel like we get to catch a break and then something else happens. Whatever the reason is, everyone living will have their own trials in their life, this blog is the story from here on out of one of the journeys that my little family will be on.
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