Wishing I had something wonderfully creative to write, but I think I'm existing in a complete brain fog these days. I haven't posted anything for almost a year, and aside from the guilt I feel for keeping some of you wondering how Nate is doing, I'm grateful for the break! I've procrastinated writing this as long as I can. but I know it's time to get all of Nate's fan club/cheerleaders/prayer warriors on board and behind him.
Nate had a routine scan back in October which showed a new tumor in his groin, right in the middle of one of the deep muscles by his femur. Dr. Lambert was a little surprised about the location, but figured that the cells had probably migrated through herniated openings in the surgical mesh Nate has all across his pelvis from his previous hernia repairs. The mesh is so ingrained in the surrounding tissue that they've never been able to remove it and it's always been an area of concern because the cells settle there with gravity and also hide there very well. The news was disappointing but we were very happy that the abdomen looked clear, except for the usual spots that always look a little irregular due to Nate's unique anatomy from all prior surgeries. We get a lot of lines like, "could be inflammation", "looks like an enlarged lymph node", "could be scar tissue", and our favorite, "we will have to wait and see". This time Dr. Lambert recommended a biopsy of the area in the groin to make sure we were seeing tumor and not just fluid or something else. I was really hoping for some crazy medical mystery fluke and that Nate was just growing an extra toe in his muscle or something weird like that! Don't think I'm crazy! I once had a friend who was growing a molar in her ovary! Unfortunately, I don't have a crazy story to tell. No toes, no teeth, just tumor.
In the meantime, our wonderful Dr. Whisenant (local medical oncologist) moved his practice to the Huntsman Center in October. Since our insurance doesn't cover us there, we were forced to find a new medical oncologist. Not good news for Natalie who abhors change! We began the process of finding a new doctor, and through one of Nate's best friends, we ended up with someone we feel very comfortable with. That process was a whole other set of answered prayers and angels set in our path.
We met with our new doctor, Dr. Gray, and also counseled with Dr. Lambert about the biopsy results. Dr. Lambert took it to her tumor board and it was recommended that we watch the area for a few months then depending on any changes, travel back to Massachusetts where she would do one of two procedures. The first would be a small procedure involving sucking the mucin out with an image guided catheter then filling the space with HIPEC through the same catheter, and hopefully killing all remaining cells. This would've been a day surgery. Imagine that! Flying across the country for an outpatient procedure! I admit that it seems like a very nice adventure compared to what we're facing now!
The other option would be to make a large incision to remove all the surgical mesh across Nate's entire pelvis and tracking and removing the diseased tissue all the way down to his groin. That would've been pretty involved. In hindsight, we would gladly take either of these options!
Nate had the scheduled CT scan on March 3, and we braced ourselves to learn which procedure would be required. We knew the news wasn't great because we accessed the patient portal and read the radiologist's report the next day. Unfortunately, the scan showed two rather large tumors that have grown quite quickly since the last scan in October. These were both "wait and see, it might just be inflammation and a large lymph node (that's been there since 2013 so we don't pay too much attention to this one)". Nope, looks like they were tumors all along. We emailed Dr. Lambert and she agreed that the news wasn't great but she wanted to see the scan for herself and it hadn't arrived yet. We waited through an extra long weekend and finally got a call Monday evening. As if the discovery of the other tumors wasn't hard enough to hear, Dr. Lambert didn't feel that surgery was an option for one of the tumors which is spread across the mesentery, or blood supply, of the small intestine. As hard as it was to face another surgery, facing an inoperable tumor was pretty devastating. Dr. Lambert was clearly disappointed but wanted to take Nate's case to her tumor board on Friday. She speculated that they would recommend more systemic chemotherapy to try to slow the tumor growth.
As for the other two tumors, they can both be treated surgically but since the other tumor can't, we will only go that route if they start to cause pain or obstruction. Since both of these tumors can be felt in the belly, they could give us some indication of how the chemo is working.
Nate and I have been blasted by bad news before, but this obliterated us. What do you do with news like this? I'm always amazed when I think I'm at a place where I think I've heard and felt it all, then I get kicked in the gut a whole new way. I blame it on that dang human spirit that learns and heals and hopes and protects. I know it's an amazing blessing, but such raw emotion can really take a toll! Nate seems as super human as ever. He's rolling with the punches and is ready to fight this again.
We met with our new doctor on Thursday, and we found him to be a very hopeful and encouraging person. He hadn't spoken with Dr. Lambert yet, but agreed with her assessment and also recommended systemic chemotherapy. We agreed to talk again after the tumor board met on Friday.
We didn't have any big surprises on Friday. The tumor board, who knows Nate's case well by now, did recommend chemotherapy. They all agreed that he should start the FolFox regimen that he started with back in 2012. They wanted the drugs that have been absent from Nate's body for the longest period of time so they would hopefully have a better chance of "surprising" those smart little cancer cells. They'll also administer Avastin which helps eliminate new blood supply to tumors. He's had this before in conjunction with other regimens but hasn't had it for very long. It can't be given in the weeks leading up to surgery so they've always had to stop it before he gets very many doses.
Nate and I have been in a fog for the last two weeks and are ready to take action, which brings me to today. As I write this post, I'm waiting for Nate to have his third port placed. This is the little device that's installed just below his collar bone that has a small tube that is placed right at the opening of the vena cava (the large vessel that returns blood to the heart). The chemo is very caustic on the veins so this helps dilute the chemicals rapidly and spread them throughout the body quickly. True to his nature, Nate remains patient and kind to his caregivers. He just returned from the procedure and his nurse commented that he "was the quietest patient" he's had in a long time. I do love this man of mine and find his patience and respect for others very endearing.
The plan is that Nate will get his first round of FolFox this coming Monday, and every other week after that for three months followed by another scan to see how it's working. The process is the same as it's been in the past. He'll be in the infusion clinic for 5-6 hours then will go home with a pump which will infuse the chemo slowly over the next 46 hours. I know what your next question is, and the answer is YES! He absolutely gets to wear his awesome fanny pack again! Although, our 14 year old daughter just informed us that she wants a fanny pack because apparently they've made a fashion comeback! Maybe we could bedazzle it or get Nate and Emma matching ones this time around. I'll keep you updated!
Fast forward...It's now Monday. I wasn't fast enough on Friday to get this posted before Nate was finished with his procedure and was trying to escape the hospital! He's recovered well from the port placement and we had a very pleasant weekend. As I write this, Nate and I are sitting at our new infusion clinic in Layton (since we switched doctors we have a new clinic to go to). I guess it's good to change things up. We spent so much time at the other clinic that as soon as we got within 20 feet of it Nate would turn green and get nauseous. This clinic has a different smell to it so I'm betting it'll take a couple exposures to get his dander up! I left to grab him some lunch and when I got back he already had that familiar "chemo complexion". Strange how these things come rushing back.
Cancer is such a stupid disease...there's no clever way to say that. It's been really difficult to think about the trudge we have ahead of us, and it's even more difficult to watch our kids start back on this path. They're 16, 14, 11, and 8, and they've learned a whole lot about life. They're amazing kids and we love them so much.
We're grateful for all the blessings we've been given through this trial, and look forward to many more. We would obviously love to be done with all of this but for now that's not the plan for us so all we can do is wait in FAITH, PRAY BIG, and keep on HOPING. Please pray for Nate and for our children. We need all the strength and courage we can muster. You're support and words of encouragement keep us afloat more than you could possibly realize!
Next week is Spring Break and we're taking the kids on our first ever backpacking trip! Everyone but Sydney has been on a solo trip with Nate so we're excited to have the whole family join in! I'm sure it'll be an amazing adventure and we're so excited to make new memories. Sending up a few extra prayers that Nate will have a quick recovery and that he'll be able to thoroughly enjoy doing what he loves!
