I promise that I haven't forgotten to update the blog! We still haven't heard anything about Nate. Although it makes me anxious, I know that Dr. Lambert is probably in a zone, and is hopefully making good progress. I'm still praying that the surgery will be complete, and that she'll be able to administer the heated chemo. Please continue with your prayers too!
Thanks for all of the texts, emails and FB messages. I'm grateful that so many people love Nate almost as much as I do!
I'll update as soon as I hear something!
Our Family's Journey with Appendix Cancer
Tuesday, June 19, 2012
Surgery Day 6:00-7:30 a.m.
We arrived at the hospital at 6:00 a.m. after a reasonably good night sleep. We were immediately taken to the pre-op unit where we began preparations. Nate was in good spirits and claimed he was a "3" on the nervous scale of 0 to 10, 10 being the most nervous. I asked what he was comparing to, and if he'd ever been a 10. He said he had experienced a 10 on August 1, 1996...the day before we got married. Ever the joker!
We got to stay with him for over an hour while the surgical team prepped him. Dr. Lambert came in to talk with us and we were able to have a prayer with her. I'm so thankful for the power of prayer. It was a very calming experience for us. I know that Nate is in Heavenly Father's care today.
The anesthesiologist was getting ready to start his epidural and arterial line when we said our goodbyes. He did confirm that Nate will probably remain intubated until tomorrow morning. We said goodbye right at 7:30. It seems that they were a little ahead of schedule, but it'll still take some time to get everything set up in the O.R. I won't start the countdown until 8:30 or so.
Even though we were nervous, we both feel at peace. We know we've been led here, and we trust in Dr. Lambert and her skills. I know that she'll be guided if needed. We are in Heavenly Father's hands.
I'll have a prayer in my heart all day long.
We got to stay with him for over an hour while the surgical team prepped him. Dr. Lambert came in to talk with us and we were able to have a prayer with her. I'm so thankful for the power of prayer. It was a very calming experience for us. I know that Nate is in Heavenly Father's care today.
The anesthesiologist was getting ready to start his epidural and arterial line when we said our goodbyes. He did confirm that Nate will probably remain intubated until tomorrow morning. We said goodbye right at 7:30. It seems that they were a little ahead of schedule, but it'll still take some time to get everything set up in the O.R. I won't start the countdown until 8:30 or so.
Even though we were nervous, we both feel at peace. We know we've been led here, and we trust in Dr. Lambert and her skills. I know that she'll be guided if needed. We are in Heavenly Father's hands.
I'll have a prayer in my heart all day long.
Monday, June 18, 2012
On The Countdown
The sight seeing portion of our trip is now over. We had a great weekend together in Boston. We walked the Freedom Trail and visited Vermont to see the birthplace of Joseph Smith. Starting tomorrow, the only sites we will see will be on the inside of the hospital.
Today we drove back into Boston to pick up Nate's mom, Nancy, and my sister, Genn, at the airport. Nate is also doing his surgery prep today.
Our appointment with Dr. Lambert went well on Friday. The CT scan gave us a more clear picture of what's going on in Nate's belly. Dr. Lambert walked through the entire scan with us and showed us the problem spots. As we knew, there are a few tumors left. The scan showed mucous on his liver, on his diaphragm, on his ommentum, around his spleen, and possibly around his gallbladder. We could also see the big tumor by his sigmoid colon. It measures about 8 cm in diameter. This one will be the biggest problem to remove. She could see a nice plane between the tumor and the colon but couldn't be sure that the plane extends all the way around. We are praying that the tumor hasn't adheased to the colon and that she'll be able to remove it without having to take a lot of the colon. If she can get all of the visible tumors, mucous, and peritoneal lining, she will administer the heated chemo.
She estimates that the surgery will take 12 to 15 hours. We have to be at the hospital in the morning at 6 a.m. We'll be put in a holding area for all the preparation. They'll place the IV's, the epidural, draw blood, and we'll get to talk with Dr. Lambert again. By The time Nate gets to the OR and she's ready to start the surgery, it'll be around 9 a.m. So, the 12 to 15 hour countdown will begin at that point. He may not be out until midnight. When the surgery is over, Nate will go straight to the ICU. Since it'll be so late, Dr. Lambert said she'll probably leave him intubated overnight. So he'll be "under" for almost 24 hours. Let's all pray that he some awesome dreams! I'm grateful that he won't have to wake up for awhile. Dr. Lambert will meet with us when the surgery is done and talk with us about the outcome. At that point we'll be able to see Nate in the ICU.
Nancy, Genn, and I will be in the surgical waiting room for the duration. We expect to get periodic updates, but probably not very often. I will post to the blog every time I do get an update. If you would like to join us in our prayers, we're praying for Nate's body to be strong and able to endure the surgery, that the tumors will be able to be removed well, that Dr. Lambert will perform to the best of her ability and that we will feel peace and comfort.
Our kids are having fun with my parents up in Idaho. They're all aware of what's going on, and they continue to pray for Nate as well. I pray that they'll feel comfort and have lots of fun tomorrow! We appreciate our family for helping us so much.
Tomorrow is going to be one long day! Thanks again for all the love and prayers offered on our behalf. We've learned so much about the goodness of others. We're grateful for our blessings. I'm grateful for Nate and his amazing attitude and courage. He is my rock.
Today we drove back into Boston to pick up Nate's mom, Nancy, and my sister, Genn, at the airport. Nate is also doing his surgery prep today.
Our appointment with Dr. Lambert went well on Friday. The CT scan gave us a more clear picture of what's going on in Nate's belly. Dr. Lambert walked through the entire scan with us and showed us the problem spots. As we knew, there are a few tumors left. The scan showed mucous on his liver, on his diaphragm, on his ommentum, around his spleen, and possibly around his gallbladder. We could also see the big tumor by his sigmoid colon. It measures about 8 cm in diameter. This one will be the biggest problem to remove. She could see a nice plane between the tumor and the colon but couldn't be sure that the plane extends all the way around. We are praying that the tumor hasn't adheased to the colon and that she'll be able to remove it without having to take a lot of the colon. If she can get all of the visible tumors, mucous, and peritoneal lining, she will administer the heated chemo.
She estimates that the surgery will take 12 to 15 hours. We have to be at the hospital in the morning at 6 a.m. We'll be put in a holding area for all the preparation. They'll place the IV's, the epidural, draw blood, and we'll get to talk with Dr. Lambert again. By The time Nate gets to the OR and she's ready to start the surgery, it'll be around 9 a.m. So, the 12 to 15 hour countdown will begin at that point. He may not be out until midnight. When the surgery is over, Nate will go straight to the ICU. Since it'll be so late, Dr. Lambert said she'll probably leave him intubated overnight. So he'll be "under" for almost 24 hours. Let's all pray that he some awesome dreams! I'm grateful that he won't have to wake up for awhile. Dr. Lambert will meet with us when the surgery is done and talk with us about the outcome. At that point we'll be able to see Nate in the ICU.
Nancy, Genn, and I will be in the surgical waiting room for the duration. We expect to get periodic updates, but probably not very often. I will post to the blog every time I do get an update. If you would like to join us in our prayers, we're praying for Nate's body to be strong and able to endure the surgery, that the tumors will be able to be removed well, that Dr. Lambert will perform to the best of her ability and that we will feel peace and comfort.
Our kids are having fun with my parents up in Idaho. They're all aware of what's going on, and they continue to pray for Nate as well. I pray that they'll feel comfort and have lots of fun tomorrow! We appreciate our family for helping us so much.
Tomorrow is going to be one long day! Thanks again for all the love and prayers offered on our behalf. We've learned so much about the goodness of others. We're grateful for our blessings. I'm grateful for Nate and his amazing attitude and courage. He is my rock.
Friday, June 15, 2012
Beantown
We're here! It seems a little bit like a dream. I could definitely use that word again...surreal. We flew into Boston yesterday and drove to Worcester, a little over an hour away in rush hour. We checked into the Hope Lodge and went grocery shopping. The Hope Lodge is a really cool old Victorian home. It's huge! It's one of those places I could get lost in. It has nine patient bedrooms and is currently full. I'm grateful to stay in such a good environment. The people there seem very friendly, and everyone is kind of in the same boat. We are definitely in The Land of Cancer. After having a good month long plus break from treatments and appointments, it's kind of hard to jump right back in to having cancer be the main focus of our days again. It's not that we don't think about cancer every hour of every day, it's just that we've anticipated this part of Nate's treatment for so long. Until now its been something "in the future", and now it's here!
Today Nate has all his pre op appointments. We started at 7:00 a.m. With a CT scan with contrast. We headed over to another building for pre op testing which included blood draws, an EKG, a physical, and a pre op with anesthesiology. They ordered a chest X-ray so now we're back in radiology. We have our consultation with Dr Lambert at 1:40 in another building about a mile away where she'll look at the scan and X-ray with us, do another physical exam, give us a tour of the hospital and give all pre op instructions. I'm tired already! Nate's doing great!
I've already received a few texts and FB comments and want to thank everyone for the words of encouragement and offers to help. We are blessed! Also, please don't hesitate to text Nate anytime! You'd be surprised how a little text every now and then can brighten an otherwise dark day! We're heading to Boston for some sight seeing in the morning and will be back to Worcester Sunday night. I'll update when I can. Thanks for your continued prayers!
Today Nate has all his pre op appointments. We started at 7:00 a.m. With a CT scan with contrast. We headed over to another building for pre op testing which included blood draws, an EKG, a physical, and a pre op with anesthesiology. They ordered a chest X-ray so now we're back in radiology. We have our consultation with Dr Lambert at 1:40 in another building about a mile away where she'll look at the scan and X-ray with us, do another physical exam, give us a tour of the hospital and give all pre op instructions. I'm tired already! Nate's doing great!
I've already received a few texts and FB comments and want to thank everyone for the words of encouragement and offers to help. We are blessed! Also, please don't hesitate to text Nate anytime! You'd be surprised how a little text every now and then can brighten an otherwise dark day! We're heading to Boston for some sight seeing in the morning and will be back to Worcester Sunday night. I'll update when I can. Thanks for your continued prayers!
Wednesday, June 6, 2012
New friends with similar circumstances
As our circumstances have it, Natalie and I have come to know of some folks from Layton who have encountered the same foe as myself. They are Tim and Tami Flanery. Tami was diagnosed with appendix cancer after first being misdiagnosed with colon cancer and then ovarian cancer. They have had a rough go of things, so we ask that you also include them in your prayers. They are pretty courageous people who are not letting many obstacles get in their way.
As a coincidence, Tami is Boston now staying in the Hope Lodge. Her surgery is scheduled for the 12th, also with Dr. Lambert. They also have a family blog following their journey fighting this cancer. They also have a fundraiser site, as their insurance provider has not been as cooperative as mine.
Unfortunately, we will be seeing these "neighbors" back in Boston soon in less than exciting circumstances. Nat and Tim will be in the same lodge while Tami recovers and as I begin my surgery.
As a coincidence, Tami is Boston now staying in the Hope Lodge. Her surgery is scheduled for the 12th, also with Dr. Lambert. They also have a family blog following their journey fighting this cancer. They also have a fundraiser site, as their insurance provider has not been as cooperative as mine.
Unfortunately, we will be seeing these "neighbors" back in Boston soon in less than exciting circumstances. Nat and Tim will be in the same lodge while Tami recovers and as I begin my surgery.
A Few Minor Details...
As we prepare for our next adventure, Nate and I are very mindful of all the support we've received over the past four months. We know there are many who include us in their thoughts, prayers, and fasts, many who help with daily tasks, and many who offer encouragement. We hope that we've conveyed our gratitude to all of you. It's important to us that you all know how much your love and encouragement have sustained us over the past few months. So, THANK YOU! WE LOVE YOU!
As we've anticipated this next surgery, we've experienced a lot of ups and downs. After the insurance approved the procedure, our new focus became the details of the trip. We're preparing the best we know how. The kids are all taken care of and will hopefully have an amazing month with their cousins and Grandparents up in Idaho. They're all excited to spend time with family that we don't get to see very often. They'll be together for most of the time we're away and I hope it'll be a good opportunity for them to lean on each other. I'm so grateful that our family is so willing to love our kids while we're away.
When we started to look at our travel arrangements, I got a little overwhelmed. Cue the blessings...One of Nate's dear friends from high school offered his frequent flyer miles to get us to Boston. He booked our flight and all I had to do was open up my email to retrieve the itinerary. When that was booked, I called the Hope Lodge in Worcester, Mass and found out that they already had us booked to stay with them from June 14th to July 26th. It had all been arranged by our surgeon's team! Another dear friend of our family has offered to help us find lodging for Nate's mom and my sister. I'm continually amazed and overwhelmed by the generosity of others.
The Hope Lodge is run by the American Cancer Society, and is provided for cancer patients and their caregiver. It's free of charge while the patient is in treatment. This is the link to the Hope Lodge in Worcester, Ma.:
http://www.cancer.org/Treatment/SupportProgramsServices/HopeLodge/Worcester/worcester-about-our-facility
If you have a minute, check it out! The ACS does some pretty amazing work to support cancer patients and their families.
We're leaving for Boston on Thursday, June 14th. Nate has all of his pre-op testing and appointments on Friday, and they'll take 6 to 8 hours. Since we have Saturday and Sunday free, we're going to head to Boston for some sight seeing. Nate wants to check out the Freedom Trail on Saturday. On Sunday we'll find a Sacrament Meeting to attend and then drive up to Vermont to visit the Visitor Center at Joseph Smith's birthplace. It's a part of the country Nate's never been to, and I think he's going to enjoy some exploring.
Monday is surgery prep day so we'll just be hanging out at the Hope Lodge. Nate's mom and my sister are coming out to support us the through the surgery and ICU stay. They fly in Monday evening so we'll go pick them up in Boston. It'll be a good diversion from the surgery prep.
The surgery will most likely start at the crack of dawn on Tuesday, June 19th. The procedure will probably take 8 to 12 hours. Nate will go directly to the ICU where they anticipate a 2 to 5 day stay. He'll then be moved to a regular room where he'll stay another 7 to 10 days. When he's recovered enough to be released from the hospital, he'll come stay with me at the Hope Lodge. He'll have post op appointments until he's healthy enough to travel home. At that point, we'll be able to make airline reservations and get back home to our kids. PHEW!
We've set up Skype accounts so we can video chat with our kids and family. I know the kids will be missing their friends, so if anyone would like to get in touch with them, I can give you their information. I know they would love to hear from their friends!
Once again, we are ever grateful for our wonderful friends and family who have carried us through the last few months. Please keep Nathan and our kids in your prayers. We're praying for courage, miracles, and a quick, uncomplicated recovery! I'll update this blog daily while we're gone but please don't hesitate to call, text, or email if you have any questions or if you just want to give Nate words of encouragement.
We love and appreciate you all! Thank you for all you do and for just loving us. We couldn't do it without you.
As we've anticipated this next surgery, we've experienced a lot of ups and downs. After the insurance approved the procedure, our new focus became the details of the trip. We're preparing the best we know how. The kids are all taken care of and will hopefully have an amazing month with their cousins and Grandparents up in Idaho. They're all excited to spend time with family that we don't get to see very often. They'll be together for most of the time we're away and I hope it'll be a good opportunity for them to lean on each other. I'm so grateful that our family is so willing to love our kids while we're away.
When we started to look at our travel arrangements, I got a little overwhelmed. Cue the blessings...One of Nate's dear friends from high school offered his frequent flyer miles to get us to Boston. He booked our flight and all I had to do was open up my email to retrieve the itinerary. When that was booked, I called the Hope Lodge in Worcester, Mass and found out that they already had us booked to stay with them from June 14th to July 26th. It had all been arranged by our surgeon's team! Another dear friend of our family has offered to help us find lodging for Nate's mom and my sister. I'm continually amazed and overwhelmed by the generosity of others.
The Hope Lodge is run by the American Cancer Society, and is provided for cancer patients and their caregiver. It's free of charge while the patient is in treatment. This is the link to the Hope Lodge in Worcester, Ma.:
http://www.cancer.org/Treatment/SupportProgramsServices/HopeLodge/Worcester/worcester-about-our-facility
If you have a minute, check it out! The ACS does some pretty amazing work to support cancer patients and their families.
We're leaving for Boston on Thursday, June 14th. Nate has all of his pre-op testing and appointments on Friday, and they'll take 6 to 8 hours. Since we have Saturday and Sunday free, we're going to head to Boston for some sight seeing. Nate wants to check out the Freedom Trail on Saturday. On Sunday we'll find a Sacrament Meeting to attend and then drive up to Vermont to visit the Visitor Center at Joseph Smith's birthplace. It's a part of the country Nate's never been to, and I think he's going to enjoy some exploring.
Monday is surgery prep day so we'll just be hanging out at the Hope Lodge. Nate's mom and my sister are coming out to support us the through the surgery and ICU stay. They fly in Monday evening so we'll go pick them up in Boston. It'll be a good diversion from the surgery prep.
The surgery will most likely start at the crack of dawn on Tuesday, June 19th. The procedure will probably take 8 to 12 hours. Nate will go directly to the ICU where they anticipate a 2 to 5 day stay. He'll then be moved to a regular room where he'll stay another 7 to 10 days. When he's recovered enough to be released from the hospital, he'll come stay with me at the Hope Lodge. He'll have post op appointments until he's healthy enough to travel home. At that point, we'll be able to make airline reservations and get back home to our kids. PHEW!
We've set up Skype accounts so we can video chat with our kids and family. I know the kids will be missing their friends, so if anyone would like to get in touch with them, I can give you their information. I know they would love to hear from their friends!
Once again, we are ever grateful for our wonderful friends and family who have carried us through the last few months. Please keep Nathan and our kids in your prayers. We're praying for courage, miracles, and a quick, uncomplicated recovery! I'll update this blog daily while we're gone but please don't hesitate to call, text, or email if you have any questions or if you just want to give Nate words of encouragement.
We love and appreciate you all! Thank you for all you do and for just loving us. We couldn't do it without you.
Friday, May 25, 2012
How Is All of This Going To Work?
Here's what we've been up to:
Nate, being the wonderful husband that he is, planned a very last minute trip for the two of us to Kauai! We figured out that it would be our first "alone" trip since our honeymoon. Why haven't we done this sooner? We had less than two weeks to be ready, which was fine since our bags were still packed from our February cruise that never happened. Just kidding, but we pretty much took the same stuff. We had a fabulous time together! We snorkeled, boogie boarded, relaxed on the beach and at the pool, and had lots of yummy food. It was much needed, and I'm grateful for the time we had together.
Two days before we left we got the news that our insurance had approved HALF of Nate's surgery. I wrote about this in my last post. I knew that meant that we'd have to spend some time while in Kauai arranging for Nate's travel to Massachusetts for a consultation on May 30. It also meant more time off of work, more expense with the extra travel, and more time for Nate to be away. I was anxious about it...but then I'm always anxious these days, right? Anyway, we were sitting in LAX on a layover and Nate was on the phone with an Angel Flight Network trying to get a flight, and our surgeon's office beeped in to tell us that they'd just received word from our insurance that they'd authorized the HIPEC portion of the surgery. What?! All morning long I'd been praying over and over that our travel plans would "be easy", that they'd fall into place. I just needed something "easy". We haven't had much "easy" these days, and I was feeling pretty desperate for it. When Nate told me the news I broke into tears. Could the travel plans be made any more easy? I don't think so! I absolutely knew that we'd been given a very direct answer to our prayers and I was so grateful! It's times like this that I'm reminded that we're being watched over, even when we think we've been forgotten.
This meant that Nate didn't have to go for the extra visit and consultation, we didn't have to make any travel plans while we were in Kauai, and we didn't have to wonder what our insurance would do. It was a total relief. I'll even admit that I didn't think about insurance or surgery for our entire trip! It was a great break!
We're now working on the logistics for the big MOAS in June. Nate is scheduled for a CT scan, pre-op testing, and his consultation with our surgeon on June 15 in Worcester, Massachusetts (about an hour inland from Boston). We'll have to fly out on June 14. Happy Father's Day to Nate...ugh! Monday the 18th will be filled with the pre-op prep...yuck. Surgery is scheduled for Tuesday the 19th.
We're trying to figure out our flights, transportation, and lodging for our stay. The American Cancer Society has some wonderful resources available to cancer patients and caregivers. They have a Hope Lodge, like a Ronald McDonald House for cancer patients, 3 miles from the hospital (UMASS). I spoke with them this morning and reserved a room there from June 14 to July 26. We're hoping not to wear out our welcome there, and that Nate is home well before July 26, but they always schedule out some extra time just in case. The coordinator there was very kind and very helpful. Our next step is our flights, actually our flight. They told us to make a one way reservation since we won't have any way of knowing when Nate will be able to travel back home. This is where I wonder how in the heck this is all going to work out logistically? To date, nobody has had to move into the Hope Lodge permanently because they couldn't get a flight home...I asked.
It's just a lot of little details surrounding a big stressful event. I know it will all work out, I just don't know how. But then that's a lesson I've learned time and again...sometimes we aren't meant to know the how or the why, just the what. I think this is what it means to walk to the edge of the darkness and take your first few steps in. It's scary, and I'm weary of doing it, but I know we'll be blessed along the way.
We continue to have great support from our family and our friends. We're gearing up for our time away and find comfort knowing that our children will be loved while we're gone and that our home will be taken care of. My sister's been helping arrange flights, our family is ready to take our kids while we're gone, and our friends have offered help with our house and yard. To all of you awesome friends and family out there, we love you! Thank you for your continued faith and prayers.
Nate, being the wonderful husband that he is, planned a very last minute trip for the two of us to Kauai! We figured out that it would be our first "alone" trip since our honeymoon. Why haven't we done this sooner? We had less than two weeks to be ready, which was fine since our bags were still packed from our February cruise that never happened. Just kidding, but we pretty much took the same stuff. We had a fabulous time together! We snorkeled, boogie boarded, relaxed on the beach and at the pool, and had lots of yummy food. It was much needed, and I'm grateful for the time we had together.
Two days before we left we got the news that our insurance had approved HALF of Nate's surgery. I wrote about this in my last post. I knew that meant that we'd have to spend some time while in Kauai arranging for Nate's travel to Massachusetts for a consultation on May 30. It also meant more time off of work, more expense with the extra travel, and more time for Nate to be away. I was anxious about it...but then I'm always anxious these days, right? Anyway, we were sitting in LAX on a layover and Nate was on the phone with an Angel Flight Network trying to get a flight, and our surgeon's office beeped in to tell us that they'd just received word from our insurance that they'd authorized the HIPEC portion of the surgery. What?! All morning long I'd been praying over and over that our travel plans would "be easy", that they'd fall into place. I just needed something "easy". We haven't had much "easy" these days, and I was feeling pretty desperate for it. When Nate told me the news I broke into tears. Could the travel plans be made any more easy? I don't think so! I absolutely knew that we'd been given a very direct answer to our prayers and I was so grateful! It's times like this that I'm reminded that we're being watched over, even when we think we've been forgotten.
This meant that Nate didn't have to go for the extra visit and consultation, we didn't have to make any travel plans while we were in Kauai, and we didn't have to wonder what our insurance would do. It was a total relief. I'll even admit that I didn't think about insurance or surgery for our entire trip! It was a great break!
We're now working on the logistics for the big MOAS in June. Nate is scheduled for a CT scan, pre-op testing, and his consultation with our surgeon on June 15 in Worcester, Massachusetts (about an hour inland from Boston). We'll have to fly out on June 14. Happy Father's Day to Nate...ugh! Monday the 18th will be filled with the pre-op prep...yuck. Surgery is scheduled for Tuesday the 19th.
We're trying to figure out our flights, transportation, and lodging for our stay. The American Cancer Society has some wonderful resources available to cancer patients and caregivers. They have a Hope Lodge, like a Ronald McDonald House for cancer patients, 3 miles from the hospital (UMASS). I spoke with them this morning and reserved a room there from June 14 to July 26. We're hoping not to wear out our welcome there, and that Nate is home well before July 26, but they always schedule out some extra time just in case. The coordinator there was very kind and very helpful. Our next step is our flights, actually our flight. They told us to make a one way reservation since we won't have any way of knowing when Nate will be able to travel back home. This is where I wonder how in the heck this is all going to work out logistically? To date, nobody has had to move into the Hope Lodge permanently because they couldn't get a flight home...I asked.
It's just a lot of little details surrounding a big stressful event. I know it will all work out, I just don't know how. But then that's a lesson I've learned time and again...sometimes we aren't meant to know the how or the why, just the what. I think this is what it means to walk to the edge of the darkness and take your first few steps in. It's scary, and I'm weary of doing it, but I know we'll be blessed along the way.
We continue to have great support from our family and our friends. We're gearing up for our time away and find comfort knowing that our children will be loved while we're gone and that our home will be taken care of. My sister's been helping arrange flights, our family is ready to take our kids while we're gone, and our friends have offered help with our house and yard. To all of you awesome friends and family out there, we love you! Thank you for your continued faith and prayers.
Tuesday, May 15, 2012
Halfway There
Our Patient Advocate called yesterday afternoon to let us know that our insurance company had authorized half of Nate's surgery. Half? Yes, I said half. They approved the tumor debulking, but they didn't authorize the heated chemo, or HIPEC. We're "working" with them to figure out how we can get it authorized before we need to fly out to Massachusetts for the surgery. We do have a tentative date for the surgery of June 19.
Nate's still doing well! He's been off chemo now for 2 weeks, and is recovering from all of the side effects. We're hoping that he'll just keep getting better and better over the next month so he can have a little break before the big surgery.
Thanks again for all the prayers and love you've all given. Pray for good vibes from insurance!
Nate's still doing well! He's been off chemo now for 2 weeks, and is recovering from all of the side effects. We're hoping that he'll just keep getting better and better over the next month so he can have a little break before the big surgery.
Thanks again for all the prayers and love you've all given. Pray for good vibes from insurance!
Tuesday, May 8, 2012
Here's the Latest...
Nathan is recovering well from his last round of chemotherapy. He even got to eat a hot fudge sundae tonight without any cold sensitivity! It's too bad the chemo wasn't shrinking the tumors for obvious reasons, but seriously...he was so good at it! He kept busy at work and still came home to help with the kids and around the house. He looked so good that sometimes we'd have to remind the kids that he was still sick. He rarely complained, and he kept up a pretty good energy level. I started to wonder if maybe he had super hero powers. Wouldn't that be nice? He was even able to take the boys to baseball and run around the outfield shagging balls with his pump strapped around his waist! I'm sure he felt worse than he ever confessed, but I still can't get him
to admit it! All I can say is that I count it as a huge blessing, in a
long string of blessings, that he tolerated the five treatments so well. In my perfect world, Nate would've tolerated the chemo AND it would have worked on those tumors! But I'm grateful that he did so well especially since it wasn't effective.
Now we're back to the waiting game a little bit. Nate has to have a month of rest from the time he finished his last round of chemo. We're waiting for his blood counts (red blood cells, white blood cells, and mostly platelets) to recover so there's less risk of complications during the surgery. During this time he needs to exercise and eat well. Oh nuts! I've barely cooked in the last three months! I guess it's time to get it together!
We've finally decided on a surgeon. It was a tough decision for us, but we feel good about it. My Patient Advocate called today to let me know that all of the letters of necessity from our doctors, all of Nate's clinical records, and all of his medical history were submitted to our insurance today. It's out of our hands and into theirs. So now we wait for the verdict. Will our insurance authorize the procedure, or will we have to fight for it? My new prayer is that the procedure will be approved, and that we can move forward with scheduling the surgery and travel arrangements. We could seriously use some good news at this point! If everything goes smoothly, we're looking at the third week of June for the surgery. I must admit that this isn't what we had planned for our summer! I'm praying that everything works out and that Nate has the best possible outcome.
Thanks again to all of you. Your thoughts and prayers, words of encouragement, texts, voice mails, emails, phone calls, and hugs are what get me through my days. I'm truly surrounded by angels. Nate is amazing, and continues to fight hard and live life. I'm so grateful for him and his awesome attitude!
Now we're back to the waiting game a little bit. Nate has to have a month of rest from the time he finished his last round of chemo. We're waiting for his blood counts (red blood cells, white blood cells, and mostly platelets) to recover so there's less risk of complications during the surgery. During this time he needs to exercise and eat well. Oh nuts! I've barely cooked in the last three months! I guess it's time to get it together!
We've finally decided on a surgeon. It was a tough decision for us, but we feel good about it. My Patient Advocate called today to let me know that all of the letters of necessity from our doctors, all of Nate's clinical records, and all of his medical history were submitted to our insurance today. It's out of our hands and into theirs. So now we wait for the verdict. Will our insurance authorize the procedure, or will we have to fight for it? My new prayer is that the procedure will be approved, and that we can move forward with scheduling the surgery and travel arrangements. We could seriously use some good news at this point! If everything goes smoothly, we're looking at the third week of June for the surgery. I must admit that this isn't what we had planned for our summer! I'm praying that everything works out and that Nate has the best possible outcome.
Thanks again to all of you. Your thoughts and prayers, words of encouragement, texts, voice mails, emails, phone calls, and hugs are what get me through my days. I'm truly surrounded by angels. Nate is amazing, and continues to fight hard and live life. I'm so grateful for him and his awesome attitude!
Tuesday, May 1, 2012
A lesson in expectations management...
Well, Nat and I were joined by my mom, Nancy, for today's scheduled chemo treatment. I should start with a little back ground on the procedures associated with the chemo process.
First I check in at the desk. They then call me back for a quick evaluation of my weight, blood pressure, pulse and oxygen levels. Then I go back to the infusion area. It is a nice, open room with lots of windows for natural light. I take a seat in the nice recliner where the nurse begins a process to access my port. A port is a permanent access point that is implanted in my right chest under the skin that has a hose that continues under the skin up and over the clavicle and then down through the neck into the jugular vein. It is much easier than a typical needle access in the arm, but it also prevents the toxic effects to the smaller veins in the arm. Once accessed, all the nausea meds and chemo drugs are hung on the IV stand and delivered via the hose. Then I sit for 4 hours. Nat is there the whole time supporting me, taking calls of support and posting to the blog. There might be some time to cross stitch.
During this time, I have a slot scheduled with the medical oncologist. During this visit he asks how I feel and if I have any questions, etc. For today's visit, there was a bit of apprehension because we would discuss the results of yesterdays MRI scans. Today, we jumped right into a discussion on the scans. Honestly, our oncologist was a bit hesitant and we sensed it. The results were not at all what we expected or hoped for. He indicated that the scans showed no reduction in the size of the tumors. In fact, it was possible that they increased in size a millimeter or 2, but that increase could easily be error or bias in the way tumors are measured and the difference in the scan being conducted in Omaha and Utah. The bottom line was that the tumors are basically stable, but the chemotherapy is not effective.
This is where the expectations management lesson enters. I (we) should have known that little effect of the chemo was a possibility.
Now I am going to step back a couple of months to the pathology and assessment just after the first emergency surgery. Originally, the tumor pathology was declared mid-grade, or the higher level of a low-grade cancer. Low grade indicates a slow growing, not very aggressive tumor or cancer. A high grade cancer is fast growing and aggressive in nature. Since I had an emergency surgery and the tumor pathology was "mid" grade, we were uncertain as to what the next steps might be. At this point in time, we began interviewing and consulting surgical oncologists. These are surgeons that will "debulk" by surgical methods also known as the MOAS, or the Mother of all Surgeries. Based on these interviews, all but one surgeon suggested that the best course of action would be to start a regimen of chemotherapy. The basis for this decision is that, 1) I just had major surgery and another immediate surgery was not needed and I needed time to recover, 2) time was on my side since the grade was thought not to be really aggressive even though pathology was labeling as a "mid grade" cancer. Since it was "mid" grade and all manifestations thus far were that it was pretty slow growing, it was determined that time was not of the essence and we could try the chemo. Generally, chemotherapy is ineffective on Low Grade tumors and chemotherapy is highly effective on High Grade tumors.
Fast forward to today. We thought, hoped and prayed that chemo was reducing my tumors. It didnt. I should have known and expected this as a possibility.
So for the positive spin. The fact that chemo was not at all effective may suggest that I do indeed have a Low Grade cancer remaining in my gut. Surgery sooner than later is now my course of action. Nat and I will try to decide in the next day or 2 as to the city and surgeon to pursue for the surgery.
For those that know me, I am all about the positive. I see this as a blessing and positive answer to our prayers. Please don't take this all as bad news, as it is not.
Thanks to all my family, friends and acquaintances for all the prayers, thoughts, love and support for me and especially for the support to Natalie and the kids.
Nate
First I check in at the desk. They then call me back for a quick evaluation of my weight, blood pressure, pulse and oxygen levels. Then I go back to the infusion area. It is a nice, open room with lots of windows for natural light. I take a seat in the nice recliner where the nurse begins a process to access my port. A port is a permanent access point that is implanted in my right chest under the skin that has a hose that continues under the skin up and over the clavicle and then down through the neck into the jugular vein. It is much easier than a typical needle access in the arm, but it also prevents the toxic effects to the smaller veins in the arm. Once accessed, all the nausea meds and chemo drugs are hung on the IV stand and delivered via the hose. Then I sit for 4 hours. Nat is there the whole time supporting me, taking calls of support and posting to the blog. There might be some time to cross stitch.
During this time, I have a slot scheduled with the medical oncologist. During this visit he asks how I feel and if I have any questions, etc. For today's visit, there was a bit of apprehension because we would discuss the results of yesterdays MRI scans. Today, we jumped right into a discussion on the scans. Honestly, our oncologist was a bit hesitant and we sensed it. The results were not at all what we expected or hoped for. He indicated that the scans showed no reduction in the size of the tumors. In fact, it was possible that they increased in size a millimeter or 2, but that increase could easily be error or bias in the way tumors are measured and the difference in the scan being conducted in Omaha and Utah. The bottom line was that the tumors are basically stable, but the chemotherapy is not effective. This is where the expectations management lesson enters. I (we) should have known that little effect of the chemo was a possibility.
Now I am going to step back a couple of months to the pathology and assessment just after the first emergency surgery. Originally, the tumor pathology was declared mid-grade, or the higher level of a low-grade cancer. Low grade indicates a slow growing, not very aggressive tumor or cancer. A high grade cancer is fast growing and aggressive in nature. Since I had an emergency surgery and the tumor pathology was "mid" grade, we were uncertain as to what the next steps might be. At this point in time, we began interviewing and consulting surgical oncologists. These are surgeons that will "debulk" by surgical methods also known as the MOAS, or the Mother of all Surgeries. Based on these interviews, all but one surgeon suggested that the best course of action would be to start a regimen of chemotherapy. The basis for this decision is that, 1) I just had major surgery and another immediate surgery was not needed and I needed time to recover, 2) time was on my side since the grade was thought not to be really aggressive even though pathology was labeling as a "mid grade" cancer. Since it was "mid" grade and all manifestations thus far were that it was pretty slow growing, it was determined that time was not of the essence and we could try the chemo. Generally, chemotherapy is ineffective on Low Grade tumors and chemotherapy is highly effective on High Grade tumors.
Fast forward to today. We thought, hoped and prayed that chemo was reducing my tumors. It didnt. I should have known and expected this as a possibility.
So for the positive spin. The fact that chemo was not at all effective may suggest that I do indeed have a Low Grade cancer remaining in my gut. Surgery sooner than later is now my course of action. Nat and I will try to decide in the next day or 2 as to the city and surgeon to pursue for the surgery.
For those that know me, I am all about the positive. I see this as a blessing and positive answer to our prayers. Please don't take this all as bad news, as it is not.
Thanks to all my family, friends and acquaintances for all the prayers, thoughts, love and support for me and especially for the support to Natalie and the kids.
Nate
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