Scan results and treatment #13

They are in! The scan results are in! Thank you everyone for waiting patiently. We found out the results last week but had to wait a painstaking eight days to review them with the doctor. I think next time we will get the scan the day before we meet with the doctor. It's too much anxiety for me. A facebook post on a page I follow for colon cancer patients and caregivers affectionately coined the phrase as "scanxiety." Well, I definitely had that this week, let me tell you. I had the worst stomach ache a few nights ago and I couldn't sleep, the pain was so bad! I better not have cancer, I kept thinking! I was fine by the next day, a little sleep deprived, but my stomach felt a lot better.

Scott has had 12 treatments, and that's the end of treatment for stage 1-3 cancer. Since he has stage 4, there's not really an end date, but we can still decide how we want to proceed after this 12th treatment. We had the written and visual results of his scan, but couldn't decipher much of either, so we really had a lot of questions for the doctor. Today is also the day when we decide if we want to switch doctors, because we're a little frustrated with this one.

We sat down with the doctor, and he apologized for being late as usual, although today he wasn't as late. We got down to business and started reviewing results. He was VERY thorough and he showed us the visual results and went over the written results as we reviewed the visual results. He's not a radiologist and can't decipher everything, but to the best of his knowledge, pointed out the parts that corresponded to the written report. There are still multiple lesions/tumors/implants (apparently those words all mean the same thing) in the lungs but they are stable - meaning that they are not increasing in size and there are no new ones. The tumor(s) in the liver (this report said there were more than one, so we're a little confused because we thought there was only one) are shrinking and are also considered stable, and ..... drumroll, please .... there is no evidence of a tumor in the colon! 😲😁😀😊👏 WOW! Are you serious! Wahoo!

So the doctor explained it in this way. The tumor in the colon was the original tumor and that is like the barn. The other smaller tumors that have spread are like the cows who have escaped the barn. We need to kill off or contain the cows, which can still multiply and cause more baby cows (tumors). But for now, they all seem to be contained.

Then the doctor asked us how we wanted to proceed. Scott told him he's sick of the neuropathy and does not want to keep taking the drug that causes it. The doctor said he was going to suggest that anyway. Most people can't last through twelve treatments of it and he didn't think Scott should continue on that regimen any longer. So, after discussing several options, we decided that he would take a break from three chemo drugs together for at least a month, and we would eliminate the neuropathy one altogether. He will still take the other two chemo drugs, and in a month we will decide if he will take a different drug to replace the neuropathy-causing one. This one will cause hair loss, but Scott doesn't care. His hair has been thinning for a while now and he accepts that it's just eventually going to happen. He is such a good sport and has such a positive attitude. I love him so much.

We also asked the doctor if he could be put on a list for a new trial drug and he said he would refer him to the top cancer center in the state for a consult. They will discuss with us how they think his treatment should continue and if he qualifies to be put on a trial. Yay! I've wanted this from day one and am SO happy that THAT prayer has been answered. 

So, to recap quickly, we will not be changing doctors; we feel like he really took the time today to explain things and that he really cares about us and our situation and is doing all he can to help us. The CT scan could not find a tumor in the colon; if it's still there, the only way to know for sure is if he has another colonoscopy. We will consult with the doctors at the other cancer center and also with the original GI doc who did his colonoscopy to see when would be a good time to do that. We will also consult with new doctors to see if he qualifies for a clinical trial. The other tumors are stable. He won't take the neuropathy-causing drug anymore, but will still have chemo treatments every two weeks. We will meet with the doctor a month from now and decide to introduce the new chemo drug or not. The doctor also prescribed a drug that can help lessen the pain associated with the neouropathy that he is experiencing, and can continue to experience for some time. We've talked to several people who have experienced neuropathy due to chemo, and one person's lasted for a year and another one's has never gone away! 😥 We're hoping for the former.

Thank you everyone so much for all your thoughts and prayers. We can actually feel them! I can't really explain it, but just know they're helping us. We still have a long road ahead of us, but we are starting to see a light at the end. We are strong and getting stronger every day. We love each other so much and are strengthening our relationships every day. We are learning so much about things that we never thought we'd have to, but that's life, yah? You just have to roll with the punches. Love to all of you. Please keep reading.

Scan #2

It’s been forever since I’ve posted. I have 22 posts so far, and 22 people read it!  Haha! I don’t look forward to posting like I used to. It just seems like a chore now, like one more thing to check off the to-do list (not like I make them, anyway, but hopefully you get the point).

Scott has had two more chemo treatments since my last post, for a total of 12. His next scan is in two days. Blah blah blah! It’s just our new normal. I don’t even know what I want to expect. Of course, I want to expect that everything will have shrunk (again), but you just never know with this stupid disease that has a mind of its own.

At Scott’s 11th treatment, which was 4 days after we got home from Hawaii, we mentioned to the nurse how our explanation of benefits (EOB) statements that we receive every so often list the price of all the chemo drugs, and one of them is $6000! Our deductible is $8000, way to meet it after one treatment. “$6000 is nothing,” she says. “I’ve seen some as much as $20,000.” That’s absolutely ridiculous. Affordable health care, my butt! How can that even be legal for big pharma to even charge that much?! 😳 How do these people sleep at night?
Also, at treatment #11, there was a special needs lady there who was getting treatment herself, and her dad was on the chair next to her. So sad! She was very emotional and she was expressing her feelings about the whole process to the nurses, but loudly enough that many people could overhear. "I'm scared about what the scans will say. What if the treatment doesn't work? Why does my daddy have to have cancer too? Thank you for being so kind to me; you are such a good friend." The nurses were so reassuring to her and comforting. She was saying all of the things that I wish I could say out loud, but it would be weird if I did, because I'm "normal" and don't have special needs.Maybe one of these days I just won't care what other people think and say what I'm thinking out loud like this sweet special lady did.
The doctor lowered the dosage on one of the medications, per Scott's request. The neuropathy is really getting to him and he's tired of having numb, tingly, cold feet all the time. We're hoping the lowered dose will lessen his symptoms, but we'll see. His tumor marker number is in double digits now, down from quadruple. That's supposed to mean that the tumor is dying; we'll see what the scan shows.

For chemo #12, he went by himself. I only go with him when we talk to the doctor. Judge all you want; I can't be there for everything.

Scan Day - I hate scan days. Too much waiting. Besides waiting to hear the results, his appointment is later in the day, so we have to wait for that too! During my morning errands, I hear The Eye of the Tiger on the radio. I blast it and call Scott so he can listen; it's one of his favorites. One line of lyric sticks out to me: Just a man and his will to survive! It has different meaning now. When we go to the center and he gets ready to go back, the nurse tells us there may not be anyone there who can access his port.Really? You can't be serious. That is something we'll have to check on in the future; we just assumed every nurse would know how to do it, especially if they work in radiology, when cancer patients get scanned all the time, many of who have ports.
The nurse gets his info and goes to try to find someone who can access a port; I asked if she could. No luck. Scott has to get stuck! Scott hates needles. He can't be elevated in any way when he gets poked or he will get light headed and faint. He requests to lie down and she proceeds to stick him. No luck. She got a valve, instead of a vein. So she tried the other arm, again no luck. She gets a radiology tech to come see if he can find one. He finds one in his hand and he has success, but OUCH! I've had an IV in my hand when I had my babies and they hurt! I'm glad they FINALLY found a vein. We'll definitely request someone who can access a port for next time. We request a copy of his scans so far and they give us a CD. I wish I could read them, but maybe if we bring it to the doctor's office next week, he can help us decipher it. Scott will call tomorrow for the written results. I hope we can sleep tonight.

Celebrating 20 years in Hawaii

The long awaited 20th anniversary trip to Hawaii is finally here! We went with my sister and her husband also. They were married six weeks before us, bless our mom's heart for all the work she did to do two weddings in less than two months!😲 Kudos to her and her sister for all their help.
Here's a brief rundown of the week's events.

Day 1 - Saturday, June 15, 2019
Our plane left at 11:30 AM, our time, and landed in Hawaii at 1:30 PM their time. It was a non-stop flight (thank goodness!), for a total of six hours. They're 4 hours behind us, so when we landed it was 5:30 our time. I joked how awesome it was that we got to go back in time that day! 😂 I was looking forward to getting off the plane and getting the "Welcome to Hawaii" with the lei being placed around your neck. That didn't happen! What the heck! I guess they used to but don't now for security reasons. Stupid 9/11! We were ready for dinner when we landed, and since we were staying in a condo with a full kitchen, we had to go grocery shopping anyway, so we headed to Costco after we picked up the rental car to get dinner and groceries. Did you know that the Costco food court prices are the same nationwide?  One of my co-workers mentioned that before we left and so we took advantage of that piece of advice. Thanks, you know you are!  😉 After eating and shopping we headed to our condo, only to find out that there was no shampoo or conditioner in our room! What the heck?! That is so dumb! I called down the front desk and asked for some and they said they didn't provide it, just the soap. So another trip to the grocery store we took to get that and some smaller, non-bulk, items that we needed. At the check out line, the cashier, after very slowly scanning our groceries while munching on organic gummy bears (I think they were "special" organic gummy bears), 😂 asked if I wanted a bag. "Uh yah," I said, while thinking Isn't it standard procedure to get a bag for your groceries? Then I asked if there was a charge for them and she replied that it would be $0.15 each. I told her I'd take two bags and the guy behind us in line said, "Welcome to Hawaii!", while chuckling. More like California, I thought. I guess they're not the only state that charges for plastic bags. Well, at least we got welcomed to Hawaii, even if it wasn't the way I imagined! We headed back to our condo and by this time it was about 8:00 PM Hawaii time, which was midnight, our time. We were so exhausted we went to bed. We didn't see the beach once during our travels and couldn't see it from our condo, even though it was close, so between the lack of lei at the airport and not seeing the beach, it didn't feel like we were even in Hawaii. Hopefully we'll feel like it tomorrow, I think as I drift off to sleep.

Day 2 - Sunday, June 16, 2019
We woke up at 4:00 AM because we went to bed so early. Haha! That day we were planning on attending church (What, you go to church on vacation? Yes, we still go. It's important and we don't use vacation as an excuse to not go! And when you're visiting a ward, it's fun to see how the members in a different congregation interact with each other, and with you. The gospel is the same everywhere, even if the people are different). I digress. Anyway, we were planing on attending church with a former mission companion of mine. In the late 90's, when I was in my early twenties, I served a mission for the Church of Jesus Christ of Latter-Day Saints in Puerto Rico, an experience that I still treasure to this day. It was such a learning and growing experience, (so much different than this one!) I met so many wonderful people and learned so much about myself and the gospel. And I got to serve on a tropical island, which was a big bonus! 🏝❤ As part of that mission, we have companions who we serve with together, usually for about a couple of months, could be shorter or longer. These companions are with you 24/7. You live together, teach together, and hopefully learn together and get along. This particular companion of mine was brand new to the mission so I was her trainer and she was my "greenie." I was her  mission "mom" and she was my "daughter." I got to teach her the ropes of being a missionary. I think we just had fun getting to know each other while we were together because she already knew the language and how to teach the lessons. All I had to do was show her around our area and tell her about the people we were teaching. I couldn't have asked for a better "daughter". I guess we got along ok 😉 because she was fine with us going to church with her and hanging out with us after at her house. Church was great and it was wonderful to be with those Hawaiian saints. It  was Father's Day that Sunday so the men got to enjoy a delicious slice of pie before Sunday School. We headed to my "daughter's" house after for lunch and visiting.
We were officially welcomed to Hawaii at her house, after a delicious meal. She had gotten us leis made out of nuts that looked like big black beads. She placed them on our head and gave us a hug and a kiss on the cheek, the traditional Hawaiian greeting. Awwww! It was so sweet and thoughtful. We had a wonderful time reminiscing about mission memories and she gave us some good pointers about fun places to go on the island. And we enjoyed several games of UNO and she kicked our butts three games in a row.😒 We had a great time. Te quiero, mi hija!

 

Here's a picture of us in front of her cute house, with my awesome lei.

Monday, June 17, 2019
Today we went to Pearl Harbor. It was a surreal experience. My grandfather, who turned 98 on the 23rd of this month, is a WWII veteran and he was stationed on the USS Enterprise, an aircraft carrier that was stationed about 200 miles away from Pearl Harbor when the attacks happened. He came later when they received the news and was on the "clean up crew." 😥 When I told my dad we were going there, he asked me to send him pictures so he could show his dad. "He's fine with it now. He couldn't talk about it though until about 20 years ago." That made my heart sink. What these men had to endure during that time is unimaginable to me.
We watched a short film describing the history of the attacks, what led up to it, the reasons why the Japanese attacked, and the aftermath. I don't think there was a dry eye in the theater when the movie was over. Then we headed out on a boat to see the USS Arizona. That is the main boat that was attacked and had the most casualties. The boat sank and is still there in the harbor, many bodies never recovered and still inside. A floating memorial was built horizontal to the ship as a tribute to the brave men who lost their lives that day. The main memorial is closed right now for repairs, so we couldn't go inside, but we could take a boat ride out there to see it as we listened to an audio presentation about the memorial. One thing that stood out to me is when they said that there is still oil leaking from the boat (which is carefully monitored by environmental groups to protect the fish and game) called "black tears, in remembrance of the fallen crew members. It is believed that when the last survivor of the Arizona passes away, the black tears will stop. Another cool thing is the choice that is offered to the survivors for when they pass away. They may choose to have their ashes scattered at the site so they can be buried with their brothers. The presentation said that most veterans choose this option. What a somber, reverent, incredible experience this was and gave me such respect for these valiant and brave men who fought to preserve our country's freedom.
We also toured a submarine and a battleship called the USS Missouri. Scott was in his heyday for that! He loved the big guns and all the cool stuff that was on there. It took us an hour to tour the boat, and that was only two decks! That thing is huge! It was a long, hot day, but I'm so glad that we went. That is a bucket list item if you're ever in Oahu.

USS Arizona memorial. The rusty part sticking
out of the water is the sunken boat.

Inside the submarine. Them's some
tight sleeping quarters!

I wouldn't mind shooting cancer's butt with this thing!

With the deck gun on the submarine.

Them's some big guns!

Beautiful Pearl Harbor

Happy 20 years to us!

Tuesday, June 18, 2019

So 20 years ago on this day, we went and got married. We were just two young kids who were crazy in love and couldn't wait to start their lives together. Who would have imagined that twenty years later we'd be wishing for 20 more together and hoping this is not our last one? Anyways, every year on our anniversary, we return to the temple, where we were married not just for time, but were sealed for eternity. We know we'll be together after we die. This gives us great comfort as we face this challenge together. On our anniversary, we perform sealing ordinances for those who have gone before us. This reminds us of the covenants we made on our wedding day and we can help others who cannot perform these ordinances during their mortal lives. So, we went and did sealings at the temple in Laie, Oahu today. It was awesome! What a special time to share as a couple, and it was so great to have my sister and brother-in-law there too. I'm so glad we can share experiences like this together. Here's some pics from outside after we finished.

After the temple we headed to the Polynesian Cultural Center just down the street. That was the highlight of the trip! Wow! Another bucket list item! Here's some pics from that. 

Hang loose dudes! That symbol originated here.

With our fish and fishing lines that we made in Samoa!

Real life Moana!

Dancing on a canoe. Pretty dang cool!

My sister and I swinging poi balls in New Zealand.

With the dancers from the Cook Islands. They were awesome!

The pig for the luau BBQ that night. 

A dancer at the luau, right in front of our table.

Since my birthday was that month,
I got to go up on stage and show off my hula moves.
Scott and I also went up and did an anniversary dance.

It was a busy, fun-filled day and we were exhausted when we got back, seeing as how it was 2:00 AM our time. We were looking forward to sleeping in and spending a relaxing day on the beach tomorrow.

Wednesday, June 19, 2019
We slept in today and then went to Waikiki Beach in the late morning/early afternoon. It was wonderful to just sit and not have to do anything. We enjoyed playing in the ocean; the water was fantastic. It was a bit crowded, but we were fine feeling like tourists for a bit. Isn't that what we were? 😆
We went shopping after the beach for souvenirs to bring home to the kiddos. Scott got a Hawaiian shirt and I found T-shirts for everyone, and a new swim suit for myself - mine was really stretched out and it was time for a new one. I also got matching dresses for my daughter and I. We enjoyed lunch and the local mall food court. I had a local favorite called Loco Moco; it's like a bunless hamburger topped with an egg with a side of rice. Yum!
We had a wonderful relaxing day. Here's some pics of that day.

Waikiki Beach!

Loco Moco! It was really good!

Matching dresses. 

Thursday, June 20, 2019

More beaches today! This time on the North Shore; people say they're better than Waikiki, less crowded. We're excited about that. On our way to the North Shore, we went to the Dole pineapple plantation. We went on a train ride with an audio tour about the place; most of the pineapple you find in any grocery stores come from Hawaii. It was a fun, relaxing ride. After that, we went to a pineapple cutting demonstration. Wow! I guess I can get rid of my Pampered Chef pineapple slicer. It's way easier to cut pineapple than I thought. I bought a pineapple when we got home, but haven't sliced it yet. Maybe later tonight I'll show the kids how it's done and we'll enjoy refreshing pineapple. 

After the Dole plantation, we headed to the North Shore. We planned on snorkeling at Shark's Cove, but it was very crowded, so we kept driving and found a beach called Sunset Beach. Wow! It was gorgeous! People were right; the North Shore Beaches are way better. We found a shady spot under a tree and enjoyed a wonderful afternoon playing in the water and relaxing on the beach. Enjoy these pics!

Pineapple and chocolate?! My two favorite foods. We found some chocolate covered pineapple in the store, purchased it, and devoured it quickly. And we enjoyed Dole Whips too. So good!

My sister and I being silly after the train ride.

More silliness!

Beautiful Sunset Beach.

I love the beach!

This could be a postcard. Look at those clouds! So gorgeous!

Enjoying my happy place in my new swimsuit.

Friday, June 21, 2019

My sister and brother-in-law found a fun place to go kayaking today. It was for a decent price, which is hard to find in Hawaii. The main road was closed due to a landslide earlier that year, so we had to take a slight detour, and there were no signs, much to the frustration of my engineer husband. Sounds like they need a new director of engineering in Hawaii; when are we moving?! 😆

We got to the kayaking place and they showed us fun places to go. We decided on a place with snorkeling since we couldn't do that yesterday. After a short drive, we were on our way. The water was really calm, so the kayaking was fairly easy. I was worried about Scott's energy, but he was doing just fine. All week, he had walked faster than all of us. He was definitely enjoying the month off chemo. We kayaked out to a sand bar, tied down the boats, and started snorkeling. My sister and brother-in-law had never gone before, but they enjoyed it, after I adjusted my sister's mask (it wasn't tight enough, she kept getting water up her nose). Here's some pics from that adventure. Scott and my bro-in-law saw a big sea turtle, but I had the camera during that time and he couldn't get my attention, so he swam around and followed it. 

My sis and bro-in-law.

This is the only one of us in the kayak. Sorry about the water spot.

Ready for snorkeling! Haha!

After kayaking, we kept driving around the island, and we went to a lighthouse and thought we were going to enjoy a flat, paved hike, according to Google. That was not the case! It was paved, but not flat! We thought about not doing it; the men were pretty tired and worn out. We decided to bite the bullet and hike to the top ot see the lighthouse. It was during the middle of the day; we were really hot, but we made it and the view from the top was amazing. The breeze picked up for the hike down, so it was a lot more pleasant. Here's some pics from our hike.

Panoramic view from the trail.

Beautiful lighthouse.

Saturday, June 22, 2019

It's our last day here! 😭 I want to stay here forever. It's so beautiful. We checked out of our condo as late as possible, because our plane didn't leave until that evening, so we had a lot of time to kill before heading to the airport.  We went to an outdoor swap meet at Aloha stadium. We got some more souvenirs for the kids, Hawaiian shirts for the boys so they could have one just like Dad. I got an ice cold coconut, something I'd wanted all week and just didn't have a chance to find one. My sister got one too and we enjoyed a refreshing treat. Scott enjoyed being in the stadium. We were super hot after and didn't want to get more hot, so we decided to get lunch somewhere cool and spend the rest of the day indoors and enjoy the air conditioning. We headed to the mall and found a movie theater and watched the new Men in Black movie. Chris Hemsworth is really nice eye candy; that was about all I liked about the movie, oh, and the seats were really comfy. We enjoyed the A/C during the movie, then headed to the airport and waited for our 8:30 PM flight. Scott was the only one who slept on the flight; the rest of us got a few hours when we arrived home early Sunday morning. This was such a wonderful memory and I'm so glad we got to enjoy this special time together. 

Scott enjoying the massage chair at the mall. 

Ice cold coconut water. Yum!