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.

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.

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.

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!

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!

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

The Big Day?

Today was the big day! Well, actually tomorrow might be the big day...one never knows in the world of cancer. Nate had his MRI scan this morning, and after 5 1/2 hours at the hospital, he was still smiling. The order for the scan was wrong and they decided that they wanted a contrast study, so Nate got to spend an hour drinking Barium Sulfate. The scan only took about 45 minutes, but I guess they say that "Good things come to those who wait", right?
Nate starts his fifth round of chemo tomorrow, and will see our Oncologist about midway through the infusion. We're hoping that the radiologist has had time to compare the two scans and give us some good news! We continue to pray and hope for excellent results. A sincere thank you to all of you who have prayed, fasted, and sent good thoughts our way! We appreciate every bit of it!

Twilight Zone

Time is a funny thing. I feel like we're in the Twilight Zone sometimes!  I see life happening all around me but I'm not sure I'm involved in it. I always hated when people used the word 'surreal' because it seems like one of those cliches used in reality T.V. all the time. I'm never sure if the person using it really knows what it means, or if they just think it makes them sound intelligent. So here it goes...Life is so surreal!!! Sorry, I had to say it! What else can I call it? If anyone has a better term, please let me know! I still don't like the word!

Seriously, how have 3 months come and gone already? How have I aged 5 years in only 3 months? How does the last 3 months seem like they've taken a  year to pass? Maybe we are in the Twilight Zone...could somebody please yell, "Cut"!? I'm ready to be done now.

Nate is scheduled for his second MRI this Monday morning. We'll use it to compare to the MRI he had when he began his chemo. We're praying for a miracle. We've been praying that the chemo is successfully killing the cancer cells and that the tumors are shrinking. As Sam and Sydney say, "Please bless that Dad does good in his chemo". We're having a special fast this Saturday and Sunday that the scan will show that the tumors are shrinking, thereby increasing the chances for a successful surgery. Anyone who feels inclined to join our family in this petition is more than welcome! The faith of our family and friends strengthens us more than anything. Thank you to anyone who is willing to join us!

Nate continues to power through all of this. I still marvel at his strength and his ability to continue on with everyday life. He's an amazing example to me. He manages his work, his church calling, and his family time so well. I don't know how he does it, and he won't tell me either...he's such a stinker that way!!!

I know that I haven't mentioned our children very much in this blog. Many of you ask about them, and I think many more of you wonder about them. They seem to be doing OK. Of course we worry about them and their willingness to talk about all of this with us, but we try to keep most of the information out in the open. They wear their 'Live Strong' bracelets everyday and they continue to pray for Nate in all of their prayers. Since Nate looks so healthy, we actually have to remind them sometimes that he's still sick with cancer. It's weird. Sometimes I'm tempted not to say anything. Oblivion is bliss, right? But, we realize we need their faith and prayers too. They are good kids and we love them so much. It's just not fair that they have to deal with this. That's my "Boo Hoo" for this post.

As I write this, Nate is on an 11 year old scout camp out. You'd think it was the first time he's ever been away for the night if you saw me right now...why was I born with this overwhelming need to worry and fret? I hope he's having a blast doing what he loves to do! It is only 43 degrees outside and the wind is whistling...stay warm Nate!

Thanks again for all the continued prayers! I'll update again when we get some results. Hopefully we'll be able to make some plans for travel and the big surgery. Keep your fingers crossed! Love to all.

The Next "Just Wait and See"

Nate and I are here at the chemo clinic for his fourth round. We saw our Oncologist this morning and talked about our timeline for the surgery and more scans. Our Oncologist is so great. He spends a ton of time with us, is so patient, and answers our questions so thoroughly that I can usually cross off other questions on my list! We're so grateful for good people!

We decided to do another MRI on Monday, April 30. So, we're back to our "Just wait and see". We'll use this to compare to the MRI he had in Omaha to see if the chemo is working to shrink and kill those stinking tumors. We are hopeful! Depending on what they see, we may be able to get the surgery scheduled soon after that. He's scheduled to have his 5th round of chemo on May 1st so the soonest the surgery could be is about the second week of June. He'll need to have a month off of chemo for his blood counts to recover to hopefully decrease complications in surgery and healing time.

It's amazing what can be done with modern medicine! I'm very aware of the fact that 10-15 years ago, Nate wouldn't have been offered any treatment. What a crazy and depressing thought. We are so grateful!

Just received Nate's blood work (labs) back, and he's doing great! His blood counts are all still in normal range. That's huge because as long as his counts are normal, he can continue with his treatment on schedule. I'm praying that he'll continue to tolerate the chemo as well as he has!

As soon as we're done here today, Nate is going back to work. He has Board Meetings again and has presentations to give this afternoon and tomorrow. I'm constantly amazed at his strength. I'm so lucky to have him in my life. He's a wonderful example to me and our kids.

We're also so thankful for our family. My mom is here helping with the kids and the house this week! It's so nice to have her here. I wish I could just transplant our family to Farmington. They all still do an amazing job of supporting us from afar, but I can't imagine anything better than to have Nate's family and my family here in Farmington. Yes, that is a hint! :)  

As always, thanks and love to all! We are so blessed to have so many good people in our lives. Praying for a healthy Nate!!!

Just Cruising Along...

It's been quite a while since my last update, and I apologize. I know there are so many people out there who are concerned for Nathan, and the progress he's making and I feel bad for not sharing his status sooner. I've been in a little funk and haven't wanted to spread any bad ju ju! Only positive thoughts, right?!

I can't believe that Nate will start his fourth round of chemo on Tuesday. The time between rounds goes way too quickly. His third round was over Spring Break, and thankfully, Nate did awesome! I really don't know how he does it. He did so well this last round that I got a little nervous, and irrational, thinking that maybe they weren't giving the right amount of chemo. I know, I'm crazy! The "pre chemo" drugs they've been giving really seem to work for Nate. He hasn't been very nauseous, and hasn't lost anymore weight. He does experience pretty severe cold sensitivity when he drinks anything cold, or when he's exposed to cold weather. That side effect has gotten worse with each round. His sleep is also a little messed up. I've decided that I should come up with a chore list and a shopping list for him when he wakes up at 3:00 a.m. and can't sleep. So, if you see Nate out mowing the lawn in the middle of the night, just know that he hasn't gone crazy!

The day Nate was disconnected from his last round, we packed up our trailer and went camping! We headed to Idaho, to City of Rocks. We met my sister and her family there. Despite the cold weather, our kids loved it! We're thankful for the opportunity we have to create family memories. There's just something about being out in nature as a family that changes attitudes and even the way we treat each other. I loved watching Nate doing something that he LOVES. He's always loved nature and being outdoors, and I fall in love with him all over again as I watch him share this love with our kids. He's had an amazing attitude through all of this, but I still couldn't believe how well he did on our camping trip after just finishing his chemo. He's amazing!

Nate's employer continues to show such patience and understanding. They've been very flexible and so loyal. We're blessed to have amazing people behind us!

Unfortunately, we still don't have any plans for his upcoming surgery. We're back to the waiting game. We may know more after we meet with Nate's Oncologist on Tuesday about when they plan to do more scans. I'll definitely let everyone know what we find out.

As always, I want to tell everyone how grateful we are to all of you who think about us and pray for us. It's the best service anyone can do for us right now! I know that Heavenly Father is mindful of us, and I know that we've been blessed by all the prayers given on our behalf. Just this last week I was in a pretty bad funk, feeling alone and not wanting to deal with life, and I received two calls from sweet friends who just wanted to let me know they were thinking of me and my family. I'm betting that they probably don't know how much those calls meant to me, but I took them as a little hug from Heaven.

Please continue to pray for a full recovery for Nathan. It's a difficult thing for me to ask, but I KNOW it will make a difference!

Love to all!