We've been in our "time warp" for a little over two weeks now, and I finally feel as though we're coming out of it. Day-to-day activities are slowly returning to normal, and I've been playing catch up with all the things that took back seat to Nate's surgery and recovery. Even with all the amazing help we had, the pull of wanting to be at the hospital with Nate, and knowing that my kids needed me at home was difficult. I can't imagine how hard it would have been this summer if Nate's surgeries would have taken place in Salt Lake City.
Nate is healing well. His wounds are mending, his blood work looks good, and he's gaining more strength each day. He's lost his hospital weight of 20 plus pounds, and is starting to feel more normal (whatever that means). His appetite is slowly coming back as evidenced by the popcorn and chips he ate yesterday! He's been very cautious about his diet, and is pretty tuned in to every rumble of his belly. He's still an excellent patient, and I'm so glad I get to be his nurse.
As I mentioned in my previous post, our surgeon saw no evidence of disease (NED) during the procedure. She felt pretty confident that what she saw was scar tissue, but sent biopsies to be sure. Unfortunately, one of the biopsies came back positive for cancer cells and mucin. This news came just two days after the surgery. At the time, I wondered if it would have been better had we not been given the NED status. Remember how I said the feeling of relief was so intense and it was like realizing you'd lost something only because you'd found it again? Well, it's amazing how that weight came hurdling back. The area that came back positive came from the mesentary of the small intestine, and was described as the size of three Nerds (the small hard candies) stuck together. Our surgeon was able to take the whole thing out, and didn't see anything else that resembled it. We are praying that now all the cancer is out, but knowing what an insidious type of cancer that it is, all three of Nate's doctors are recommending more intravenous chemotherapy.
I feel like I'm always the bearer of bad news, and it's probably why I haven't posted in a while. We only told our kids about it this last week. It was so wonderful to see the difference in them after we were given the NED, and we couldn't bring ourselves to tell them. They took the news with great faith, but I could see the weight land back on all four of them. I'm sad that they have to deal with all of this at such a young age, or ever! I'm thankful that they are more resilient than I am!
During the surgery, they took out Nate's port where he received his chemo directly into his jugular vein just above his heart. Things looked so good that they thought they could get rid of it. Now he'll have to have another port placed before he begins chemo in late February.
Often times we find ourselves needing to recognize and remind ourselves of the blessings we've experienced during this past year. One that I've reminded myself of over the past two weeks is that even though Nate had to endure the awful ileostomy for seven months, the surgery to reverse it allowed them to find this little tumor which didn't show up on his CT scans. It would not have been detected until it had grown large enough to be seen on a scan, and by that time it could have seeded elsewhere in his abdomen. So, even though I would have been perfectly happy to stick with the NED status, I'm thankful that we can treat Nate, and hopefully get him back to good health.
Back to the question I asked before...Do I wish we had never heard the NED news? No. The feeling of pure and utter relief and joy I felt that day is what I hope to feel again. It was awesome, like nothing I'd ever felt before. All at once my mind filled with things I didn't have space to think about over the last year. I was breathing again and my heart felt free, which may sound weird, but I know that some of you will be able to relate. My hope, our hope, is that we will get back to that place. I know what it feels like now, and I can't wait to feel it again! We know there's a plan in all of this and that we just have to keep fighting for now. Thanks again for the love and support we've felt. We're blessed to have so many people care for our family.
Our Family's Journey with Appendix Cancer
Sunday, January 27, 2013
Wednesday, January 16, 2013
One Week Post-Op
Today marks one week from Nate's surgery. It's been a week of ups and downs. Nate began his recovery well and felt like he could leave the hospital within a few days. He had lots of visitors over the weekend, which was a really nice way to pass the time. Our kids came on Saturday to watch a football game on T.V. Even though they are apprehensive about being in the hospital and seeing Nate in this condition, they did well and cheered up their Daddy!His pain has been well controlled with an epidural. They finally removed it on Monday and started him on oral pain meds. The downside to that is that they are given every three hours so he doesn't get any real sleep. True to his nature, he doesn't complain. The nurses like him and everyone seems cheerful when they come in his room.
Nate had to have the dreaded Naso Gastric (NG) tube in until Thursday night. That thing makes him crazy! I think he was having flashbacks of the nine days he had it in Massachusetts. He was so happy to get that thing out!
He is a man of mystery, as we learned back in Massachusetts. After surgery, his white blood cell count (WBC) jumped up to 22, then steadily decreased all the way to 14 on Monday. He had steady vital signs (except his crazy low blood pressures, which probably resulted from the epidural) until about 6:00 every night when he would start to get a fever. It would last into the early morning hours and break, all while his WBC count kept going down. They finally started him on an antibiotic on Saturday, just in case. Monday they started him on a heavy hitting antibiotic and decided that if he had one more night of fevers, they would order a CT scan for Tuesday morning. You can guess what happened...no fever. No scan. However, his WBC count went back up to 16.5. Nice. I've decided that Nate just likes to keep us guessing.
Last night during rounds, they told Nate that they would order the CT today to check for an abscess or a leak in his newly reconnected colon. Insert freak out by Natalie here. I'll bet you can tell what happened next...WBC count back down to 14.5, so no CT scan. I can't decide if I'd rather just have Nate get the scan or not! You would think that after the summer we had, with repeated rides on the roller coaster of doom, that we would be as cool as cats by now. Not so. Of course I am only speaking for myself as Nate is always as cool as a cat (unless he has the dreaded NG tube).
Yesterday as they were examining the incision, they decided it needed to be drained so they punctured it with a Q-tip and removed a staple so all the fluid could escape. And escape it did! Does! Is! Just keeps draining and draining. The fluid looks good, and hopefully will stay that way.
So here we are in the hospital for at least another day. Nate's bowels aren't as "active" as they need to be, and our doctor wants to see what will happen tonight with his temp, his labs, and his bowel function. The last thing I want is to take Nate home and have him decline. It's a very helpless and scary feeling! The kids can't wait to have him home, and we all miss him being there. Praying that all goes well tonight and that everything heals and mends and works the way it should. He is one tough guy, but I don't want to see him suffer any more.
Thanks for all of the calls and texts. I'm sorry that I haven't updated here since the surgery, I've been a little frenzied and probably a little superstitious too. Silly me. We appreciate all the love and kindness coming our way! Here's to a "well functioning" night! Go Nate!
Friday, January 11, 2013
Snow Day!!!
What a great surprise to see the beautiful snow outside this morning! School was called off, and the kids are all out playing in the snow! The only thing that could make it better is if Nate and I could be home playing with them. I'm so glad they have today!
Nate did well yesterday. He had an elevated temperature most of Wednesday night and very low blood pressure which makes him nauseous and dizzy. The epidural he has for pain control is probably the culprit, so it becomes a balancing act. He got up once yesterday for about 5 minutes, and took a nice long walk (about 20 feet each way) today. He had a little fever again last night but it went away quickly. His BP is still low but not low enough, I guess.
I picked the kids up after school and brought them to the hospital. They were a little nervous, but I could see that they were relieved to see their dad. He still had the NG tube in so nobody was quite sure about that, but after some coaxing I got them to sit on his bed for hugs and kisses. We're both so proud of the way our kids have handled all the trials they've faced this year. I'm amazed at their resilience and the way they have had such simple faith. They are great examples to me, and are often what keeps me going. It was great for Nate to feel their love and support.
It took us an hour and 15 minutes (30 minutes usually) to get home in the snow! When we arrived, we found that our driveway had been cleared and a friend was working on our front steps. This morning I woke up to another clear driveway. Thank you, thank you!
Nate's white blood cell count was elevated to 22 Wednesday night but was down to 18 this morning. We continue to pray for his bowel to mend together and to wake up. Thank you to all of our angels, both seen and unseen who we feel watching over our family.
Nate did well yesterday. He had an elevated temperature most of Wednesday night and very low blood pressure which makes him nauseous and dizzy. The epidural he has for pain control is probably the culprit, so it becomes a balancing act. He got up once yesterday for about 5 minutes, and took a nice long walk (about 20 feet each way) today. He had a little fever again last night but it went away quickly. His BP is still low but not low enough, I guess.
I picked the kids up after school and brought them to the hospital. They were a little nervous, but I could see that they were relieved to see their dad. He still had the NG tube in so nobody was quite sure about that, but after some coaxing I got them to sit on his bed for hugs and kisses. We're both so proud of the way our kids have handled all the trials they've faced this year. I'm amazed at their resilience and the way they have had such simple faith. They are great examples to me, and are often what keeps me going. It was great for Nate to feel their love and support.
It took us an hour and 15 minutes (30 minutes usually) to get home in the snow! When we arrived, we found that our driveway had been cleared and a friend was working on our front steps. This morning I woke up to another clear driveway. Thank you, thank you!
Nate's white blood cell count was elevated to 22 Wednesday night but was down to 18 this morning. We continue to pray for his bowel to mend together and to wake up. Thank you to all of our angels, both seen and unseen who we feel watching over our family.
Wednesday, January 9, 2013
NED
I'm so grateful that I can honestly say, "Today has been a good day!" January 9th marks exactly 7 months since Nate's last surgery in Massachusetts, and 11 months and 7 days since this all began back on February 2nd. I know that we have a long way to go to get Nate feeling "normal", and the possibility of complications still exist, but I choose to celebrate this day.
I'm 99% sure that I'm not dreaming, I'm 50% superstitious (knock on wood), but I actually feel so much relief that it scares me a little! I think I'm so accustomed to getting discouraging results that I almost stopped believing that the kind of news we received today was within my reach. I was completely ready to hear that Nate did great through the surgery BUT...
We said goodbye to Nate at 7:15. He went to sleep at 8:15 when they started the procedure, and our surgeon came to talk to us at 11:55. The procedure lasted a little over 3 1/2 hours, and of course, Nate did great! We were given a very thorough report, and I was glad that Lynn, Nancy, Destry (sister-in-law), and Don (friend) were there with me to get the good news.
Most of the time was spent working on the area where Nate had the abscess from where his bowel ruptured in July. The abscess needed to be drained again and there was a lot of adhesion in the area. The large colon in the area was encased in scar tissue and was very compromised so she had to remove about 6 more inches of the transverse colon. Nate has about 1 1/2 feet of colon left which should be enough for him to adjust to. After working to free up the colon, she was able to bring the small bowel over to rejoin the two ends. She said the small colon looked very healthy, and she was hopeful that the joining site would hold up well. Nate's liver also has a lot of scarring, which was expected since it was covered in tumors and had to be scraped clean in the HIPEC procedure. She said that if it hasn't caused problems so far, that he should be ok with it. His liver function was all back to normal before this surgery as well. She also said that there weren't many adhesions anywhere else in the abdomen, which is great news!
They were able to get a pretty good look at 2 of the 3 spots in question on the latest CT scan, with an "ok" look at the spot up by the liver. But they were able to biopsy all 3 areas. Our surgeon said that they all looked like scar tissue to her, but she sent biopsies to be sure. Praying for good results there.
As we sat in the little room discussing the surgery, I had the mixed emotions of hope, relief, anxiety, and fear. I was waiting for the "punch in the gut" news we always seem to hear, but it never came! I finally got the courage to ask the doctor if her news meant that Nate would receive the always hoped for "NED" (No Evidence of Disease) status. When she said, "Yes, I saw no evidence of disease", the feeling of relief was completely overwhelming. It felt as if I'd held my breath for a year and was finally able to breathe again. It was one of those times when you realize you'd been missing something only because you'd found it again.
As I sit at Nate's bedside, I'm grateful for the miracle that we received today. Nate is an amazing man with an amazing spirit and a determination that has seen him through some pretty rough patches. He has always been optimistic, grateful, faithful, and patient. I'm overwhelmed for the blessing he is in my life, and for the blessings my Heavenly Father has granted us today. I'm thankful that my children have had the faith to pray for their dad every single day. I'm thankful for all our dear family and friends who remember the Hardy Family in their thoughts and prayers.
As we look ahead, we are praying that the connected bowel will be healthy with no leaks, that the large colon will wake up soon and cooperate, that no fistulas form, and that Nate's elevated temperature and low blood pressure will normalize very soon. I don't know how to thank everyone, but I hope you know how much we appreciate all the love we feel coming our way.
Today has been a good day!
I'm 99% sure that I'm not dreaming, I'm 50% superstitious (knock on wood), but I actually feel so much relief that it scares me a little! I think I'm so accustomed to getting discouraging results that I almost stopped believing that the kind of news we received today was within my reach. I was completely ready to hear that Nate did great through the surgery BUT...
We said goodbye to Nate at 7:15. He went to sleep at 8:15 when they started the procedure, and our surgeon came to talk to us at 11:55. The procedure lasted a little over 3 1/2 hours, and of course, Nate did great! We were given a very thorough report, and I was glad that Lynn, Nancy, Destry (sister-in-law), and Don (friend) were there with me to get the good news.
Most of the time was spent working on the area where Nate had the abscess from where his bowel ruptured in July. The abscess needed to be drained again and there was a lot of adhesion in the area. The large colon in the area was encased in scar tissue and was very compromised so she had to remove about 6 more inches of the transverse colon. Nate has about 1 1/2 feet of colon left which should be enough for him to adjust to. After working to free up the colon, she was able to bring the small bowel over to rejoin the two ends. She said the small colon looked very healthy, and she was hopeful that the joining site would hold up well. Nate's liver also has a lot of scarring, which was expected since it was covered in tumors and had to be scraped clean in the HIPEC procedure. She said that if it hasn't caused problems so far, that he should be ok with it. His liver function was all back to normal before this surgery as well. She also said that there weren't many adhesions anywhere else in the abdomen, which is great news!
They were able to get a pretty good look at 2 of the 3 spots in question on the latest CT scan, with an "ok" look at the spot up by the liver. But they were able to biopsy all 3 areas. Our surgeon said that they all looked like scar tissue to her, but she sent biopsies to be sure. Praying for good results there.
As we sat in the little room discussing the surgery, I had the mixed emotions of hope, relief, anxiety, and fear. I was waiting for the "punch in the gut" news we always seem to hear, but it never came! I finally got the courage to ask the doctor if her news meant that Nate would receive the always hoped for "NED" (No Evidence of Disease) status. When she said, "Yes, I saw no evidence of disease", the feeling of relief was completely overwhelming. It felt as if I'd held my breath for a year and was finally able to breathe again. It was one of those times when you realize you'd been missing something only because you'd found it again.
As I sit at Nate's bedside, I'm grateful for the miracle that we received today. Nate is an amazing man with an amazing spirit and a determination that has seen him through some pretty rough patches. He has always been optimistic, grateful, faithful, and patient. I'm overwhelmed for the blessing he is in my life, and for the blessings my Heavenly Father has granted us today. I'm thankful that my children have had the faith to pray for their dad every single day. I'm thankful for all our dear family and friends who remember the Hardy Family in their thoughts and prayers.
As we look ahead, we are praying that the connected bowel will be healthy with no leaks, that the large colon will wake up soon and cooperate, that no fistulas form, and that Nate's elevated temperature and low blood pressure will normalize very soon. I don't know how to thank everyone, but I hope you know how much we appreciate all the love we feel coming our way.
Today has been a good day!
1st update
Just received an update from the O.R. The first comment was about how pleasant Nate was while they were getting him ready...love it! Love him! He was doing well and they expect to be done by noon. We should get to see him around 1 or 2:00. Of course, they don't give any details in the updates but I feel like things are going well.
The Big Day...Haven't we done this already?
I did it! I finally got to hear Nate complain about something! When he found out that his arrival time at the hospital was 5:30 a.m., he let out a big groan and actually complained! I knew he had it in him, and I'm so proud.
All joking aside, I write this as Nancy and I sit in the waiting room. They took him to anesthesiology at 7:15 and we said our goodbyes. Surgery should start by 8:15 or so. They have him scheduled for 4 hours. I'll update the blog as we get updates.
We had a nice visit from our Bishopric last night, and Nate received a Priesthood Blessing from his dad and brother the night before. Nate is optimistic about the procedure and knows that everything will be ok. His surgeon came to see us this morning and she was very kind and reassuring. We know there are angels watching over Nate, and are grateful for our blessings.
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| Determination |
All joking aside, I write this as Nancy and I sit in the waiting room. They took him to anesthesiology at 7:15 and we said our goodbyes. Surgery should start by 8:15 or so. They have him scheduled for 4 hours. I'll update the blog as we get updates.
We had a nice visit from our Bishopric last night, and Nate received a Priesthood Blessing from his dad and brother the night before. Nate is optimistic about the procedure and knows that everything will be ok. His surgeon came to see us this morning and she was very kind and reassuring. We know there are angels watching over Nate, and are grateful for our blessings.
Monday, January 7, 2013
Surgery # 6...and hopefully last!
Trying to get back into the "regular schedule" after Christmas break is such a bummer! It was so great to have the kids and Nate around the house. I'm always a little sentimental when school starts back up and Nate goes back to work. I even get a little sad to take down my Christmas tree. Alas, we must move on with the New Year!
Nate had his pre-op appointment with his surgeon last Thursday, and everything is set for him to have his sixth, and hopefully last, surgery this Wednesday, January 9th. This date falls exactly seven months from his last surgery in Massachusetts. It will take place at Intermountain Medical Center (IMC) in Salt Lake City. The main objective is to reverse his ileostomy and get him all hooked back together. The surgeon will also try to get a look at the areas we saw on the last CT scan that looked suspicious. We are praying that she'll be able to access the areas with ease, and either remove them, or at least get biopsies. Nate also has an abscess that is left over from his previous surgeries that will need to be drained and removed if possible. The procedure will take 3 to 6 hours depending on what they find. We are praying with all our might that they won't find anymore disease (tumors, mucin), and that the scarring and adhesions from the HIPEC will be minimal. The HIPEC is basically a chemical burn all over the abdominal cavity, so you can imagine how much scarring can occur. They say it is different with every patient, but they always expect that they'll have to spend a large amount of time carving through the scar tissue and adhesions to get where they need to be. We like our surgeon, and trust that she'll do all she can to bring Nate through with a good outcome.
Preparing for another surgery really stinks! I can only imagine how excited Nate is. It's sad to think that he's done this five times already. Have I heard him complain? Nope. He admits he's apprehensive about the recovery, but he is full of faith that everything will be ok. I don't know how he does it. I guess all these years being married to me have made him a very patient man. Or, maybe I hoard all the "crazy" around here. Either way, he's an amazing example to me.
We're grateful for our good families. Nate's mom will be with me in the waiting room again, and my mom and dad are coming down to stay with our kids. If any of you have a minute and would like to drop by the hospital for a visit, please do! It's a welcome change to be close to home where Nate can have a few visitors to help move the time along. We estimate that he'll be in the hospital for 7 or 8 days. He will be in building #5 at IMC.
Thanks again to our family who joined us as we fasted for Nate this past Sunday. We're so grateful for the many prayers given on Nate's behalf. We know we've received great blessings because of your faith. I'll update the blog as soon as I can on Wednesday. Here's to a successful surgery, and a quick recovery. Love to all!
Nate had his pre-op appointment with his surgeon last Thursday, and everything is set for him to have his sixth, and hopefully last, surgery this Wednesday, January 9th. This date falls exactly seven months from his last surgery in Massachusetts. It will take place at Intermountain Medical Center (IMC) in Salt Lake City. The main objective is to reverse his ileostomy and get him all hooked back together. The surgeon will also try to get a look at the areas we saw on the last CT scan that looked suspicious. We are praying that she'll be able to access the areas with ease, and either remove them, or at least get biopsies. Nate also has an abscess that is left over from his previous surgeries that will need to be drained and removed if possible. The procedure will take 3 to 6 hours depending on what they find. We are praying with all our might that they won't find anymore disease (tumors, mucin), and that the scarring and adhesions from the HIPEC will be minimal. The HIPEC is basically a chemical burn all over the abdominal cavity, so you can imagine how much scarring can occur. They say it is different with every patient, but they always expect that they'll have to spend a large amount of time carving through the scar tissue and adhesions to get where they need to be. We like our surgeon, and trust that she'll do all she can to bring Nate through with a good outcome.
Preparing for another surgery really stinks! I can only imagine how excited Nate is. It's sad to think that he's done this five times already. Have I heard him complain? Nope. He admits he's apprehensive about the recovery, but he is full of faith that everything will be ok. I don't know how he does it. I guess all these years being married to me have made him a very patient man. Or, maybe I hoard all the "crazy" around here. Either way, he's an amazing example to me.
We're grateful for our good families. Nate's mom will be with me in the waiting room again, and my mom and dad are coming down to stay with our kids. If any of you have a minute and would like to drop by the hospital for a visit, please do! It's a welcome change to be close to home where Nate can have a few visitors to help move the time along. We estimate that he'll be in the hospital for 7 or 8 days. He will be in building #5 at IMC.
Thanks again to our family who joined us as we fasted for Nate this past Sunday. We're so grateful for the many prayers given on Nate's behalf. We know we've received great blessings because of your faith. I'll update the blog as soon as I can on Wednesday. Here's to a successful surgery, and a quick recovery. Love to all!
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