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