The Downward Spiral Begins

"Wait, what?" you're thinking to yourself as you read this title. "But you raised all this money for him to get treatment in Mexico that's supposed to work." 

Let me give you the rundown.

When I got home from Mexico, I had a yard sale. I've wanted to have one for years, but never had the motivation to get it organized. I don't why caring for an ill husband finally lit the fire under my butt, but it did. I guess knowing that he was being well taken care of where he was gave me peace of mind and helped me feel that something was taken off my plate and I had the time to do it. Regardless, it was a great relief to sell 20 years of collected stuff that we didn't need anymore. And I made a good chunk of money too, so that was a good feeling.

While Scott was in Mexico, our twenty first anniversary happened. It's the first time we've been apart for an anniversary. I was going to get my wedding ring fixed because the big diamond had fallen out a month before when we were hiking in the canyon. I thought I'd have time to do that too, but no such luck. I also tried to get ahold of someone at the cancer center to get a massage for Scott as an anniversary gift, but that didn't happen either. Let me tell you, I felt like wife of the year! 😢 Scott arranged with our boys to buy me flowers and have them video my reaction when they gave them to me. Score for him! It was very sweet. 

Scott came home the week after our anniversary. He had the same tests done as when he arrived - another ultrasound and more blood work. When the results came back, I asked him to call me so I could hear as the doctor explained them. He did, but the phone was far away from the doctor's mouth and with his already thick accent, it was hard for me to hear and understand. What I did understand was that his inflammatory markers were still high and the tumors had not shrunk in size. They say that's nothing to worry about, because three weeks of treatment in the center is just the starting point for the entire treatment, which includes an extensive at home treatment plan and two follow up visits at three month intervals, so his first follow up visit at the center would be around the end of September. 

After about a week at the center, Scott's stomach hurt non-stop. He stopped eating as much. We figured it was just from the different foods that he was eating. That probably had something to do with it, but we'd find out later that there was more to it than that. 

The week he got back, we had a family get together at his brother's house. Two more of his brothers were in town visiting and we had a mini family reunion of sorts. We were waiting for their father to get there so he and Scott could visit for a bit and Scott was really uncomfortable. He was in pain and just bearing through it without complaining, which was typical of him. Loud noises were hard for him, as well as talking. Every time he tried to talk at normal volume level, he would cough, which would make his throat hurt. After waiting for two hours, his father finally got there. Scott only visited with him for five minutes and then needed to go home. After an hour and a half of waiting for my father-in-law, I asked my sister-in-law to please call him and tell him that his dying son really wanted to visit with him and to please get his butt over there, so she did, but she didn't say those words; she was a lot nicer. I couldn't believe that I actually said out loud that my husband was dying; he was totally fine and going to make a miraculous recovery.  I passive aggressively called out my father-in-law and admitted my husband was dying? It's interesting what a person in pain will say and/or do. I only somewhat regret it now. Little did I know that we were in for a VERY long night!

Mexico pictures

Here are some photos from the trip. They're not in chronological order, but I'm still learning how to navigate through the blogosphere. Enjoy!

               Our table of friends who shared the cake with us!                           It was delicious!                            

Happy birthday to me!

This was as close as we could get to the beach. 😒

The cup of mango that the street vendor sold for 50 pesos, about $2.50. It was yummy!

Tijuana sign at the border. We walked down one day. We were super close to it, less than 1/4 mile.

Scott's amazing nurses, Fernando and Susanna. (Yes, there is a song for both of their names that you are probably singing in your heads right now!) 🎶😂 They were nice, hard-working, kind people. 

The ultra sound room.

Dr. Tony Jimenez, founder of the clinic. These are the principles they focus on in their therapy. He said that 94% of patients that they see at the clinic are stage 4. He didn't say what the recovery rate for those patients was though. 😢

A lighthouse close to the beach that reminded me of my Pop. He loved lighthouses.

More fun at the border.

A bull fighting stadium nearby the center.

The cute bathroom. 

Our bedroom. They wouldn't let us put the beds together, but we survived.

The beach from a distance. We couldn't go down to it. 

Not sure how you can get COVID from 

walking on the beach, but whatever!

The fountain room at the center. We were hoping for a pool, but that's only at the Cancun center. 

It was still relaxing to sit there and read or doze off.

One of the many delicious meals that we had there.

The center's front entrance. Doesn't look like much, just a regular building smooshed in with all the rest.

President Trump's wall that was built by the Mexicans in the US! We got an education about it from our driver. It looked more like a fence than a wall, but it's somewhat impenetrable. 😂

Our plane selfie! We helped ourselves to the middle seat so we could sit next to each other.

Latest updates and highs and lows

Today is my last full day here. I have mixed feelings about returning to the real world. I am very excited to see my babies. I've heard nothing but good reports from neighbors who have checked on them periodically; I know they have stayed safe and been responsible. That gives my mama heart some peace. I'm excited to hug them and spend time with them again. I am NOT excited to go back to the everyday tasks of cooking, cleaning, planning our day, etc. It's been nice to feel a little spoiled this week in that regard. It's definitely not as fast-paced of a life here and it's been really nice to slow down and relax. I am sad to leave Scott but I know he is in good hands and where he needs to be. I'm sad to leave these people. I have a special place in my heart for Latino people. I lived and served among them for 18 months in the late 90s on my mission and that place became like a second home to me. These people are just so special, loving, down-to-earth and just all around wonderful people. It has been fun to get to know them, even for a short time. I am determined to brush up on my Spanish though when I get home. I still remember a lot, but there is a lot that I have forgotten and so much more to learn. 

Yesterday we met with the functional medicine doctor again to go over supplements. Finally, someone who can tell him how to heal instead of just prescribe med after med to mask the problem. We showed him the supplements Scott has been taking and he said he would make a list of the ones he should and shouldn't be taking and the doses of each. Yay, thank you! This will be so helpful. Then we talked to him about Scott's acid reflux and if he had any suggestions for that. He told us that the acid reflux medication Scott has been taking for over a decade has inhibited his ability to absorb certain nutrients and break down certain foods because it has blocked the acid in his stomach; that's what the stomach acid is supposed to do. Then he told us everything he had learned about acid reflux throughout his education and his career, but not in a condescending way. I could tell he really wanted to help us understand what was going on inside Scott's body. Then we talked about certain foods he should avoid in order to help his body heal as well. He will talk with the nutritionist and come up with a meal plan for Scott after he returns home. We also went over Scott's vital scan and thermography results. If you don't know what thermography is, it is like a CT scan, but without the radiation. It senses the heat in your body to spot abnormalities. (I had one done last year instead of a mammogram because I didn't want radiation in my breast and I really didn't want it smashed either. No thank you!) The results of those two tests showed that he is inflamed, which the nutritionist told me too, no surprise there. He is also low in magnesium, potassium and cortisol. He will put together a supplement plan for him based on the test results and his acid reflux issues. It's going to be a major lifestyle change for him when he gets home, especially regarding his diet. I know it will be tough, but he is determined to improve his health so he can live life to the fullest. I was so proud of him as he explained things to the doctor and asked for some direction. He didn't just sit there and listen. He's really being proactive now and it was empowering to see him stand up for himself. I think he is feeling relieved too that someone finally has the answers and will work with him to figure this out! :)

I attended a nutrition class yesterday and loved it! Some of the stuff I already knew and have sort of implemented, and some stuff I didn't know. It gave me a good base on which to adjust some things in our household in regards to the food that we put into our bodies. Baby steps. I know it will benefit our entire family throughout our lives to implement these practices. I feel empowered to make these small changes to help me and my family have optimal health.

Scott also started a new treatment yesterday. It's a natural kind of immunotherapy which isn't allowed in the US. That makes me feel like a criminal when I type that. But only for a split second; then I tell myself it's been proven to help heal so many people with cancer. It's only federal regulations that make it illegal, and that's not saying much. 

Most times when we sit down to eat as a family, we go around the table and ask each person to share a "high" during the day and a "low." We do this mostly to have a structured conversation and avoid (hopefully) everyone talking at the same time, but also to help us recognize the good and bad things in life and how they make us feel and how to work through those feelings. So I'm going to do the same thing on this blog - share some "highs" and "lows" about my stay here.

Highs

• We are right across the street from the beach.
• Life is slower paced here; so relaxing.
• I ate the most delicious sliced mango in a cup from a street vendor.
• Everyone is soooooo nice!
• I remember a lot of Spanish and it's been fun to practice it.
• I know this is where Scott needs to be right now in order to restore his health.
• These doctors really want to help people. 😁
• The weather has been fantastic!
• The kids are rocking it at home, being responsible and spending time together.
• The food is amazing!
• It's beautiful here. I could live here. 
• Every patient we have met here has said they wish they'd known about this earlier, this place is the best they've been to, it's helped them so much, etc. And they're all so nice too.
• Every day there is a daily devotional! I'm not sure there would be anything like that in the US. I wanted to participate one day, so I hung out in the room where it's held. Some of the employees and patients stood in a circle and each took turns offering a vocal prayer. I was in the circle so I said one too. It was way different than any other religious thing I've participated in and a little awkward for me, but it was wonderful to feel the love of each person to the others in the circle and to hear other's testimonies of Christ through their prayers. 
• I have learned so much through coming here and feel like all of my research has been so worth it! I've been inspired with some good ideas on how to make some lifestyle changes for myself and encouraging the kids to do the same. 
• My birthday is tomorrow! And that's the day I go home! How many people can say that they get to be in two different countries on their birthday?! 😊

Lows

• The beach is closed! Stupid COVID! We can take pictures of it but can't walk on it. 😠😢
• We couldn't stand in line together at the Wal-Mart when we went to get some things we forgot at home. I had to wait at the front of the store while Scott stood in line to pay. I saw two women standing in line together about five places behind him. They weren't asked to separate. Reverse racial profiling?! Interesting.
• I don't remember as much Spanish as I thought I did. Time to brush up and learn some more.
• It's going to be really hard when Scott gets home to maintain the diet and some of the treatments. He can do it; just needs to dedicate the time.
• Sometimes I'm rather bored as I sit around for Scott to do treatments. At least I have my blogs, my books and social media to keep me occupied.
• I miss my kids.
• I hope I can re-create some of these recipes at home. I wish I could take one of these cute little Mexican ladies home with me to be my cook. 😆
• Scott's cough hasn't really subsided. We don't know if it's from the cancer, reflux, inflammation or all three. Hopefully by the end of his stay, it will have gone down. 
• Since COVID hit, the passport office has been partially "shut down". I filed for a passport the first part of March, and as of right now, I still don't have it. The people here aren't too worried, and neither am I, about me getting over the border since I've only been here a week. I have my birth certificate and driver's license and that should be sufficient. But still, the unknown is hard.

That's all for now! Thanks for reading! My next post will be full of pictures of our adventures here and I'll post that when I get home. Love to all! Nos vemos!

Hope4Cancer arrival

So when we made the decision to come here, the only thing not included in the price was travel expenses. Since it's just over the border in Tijuana, we decided to drive, since booking last minute flights can get expensive. It's only a half day's drive away. When we talked to our patient advocate over the phone, she said a lot of people rent a car for the day so they don't have to pay for parking for a week. Then we looked into rental car prices and we decided to look into flights too, just to see what the prices were. Due to COVID and the limited seating, we found a killer deal for round trip tickets so we booked those. Anytime it's cheaper to fly than drive, I'm all for that. 😀

A couple of weeks before we left, Scott started coughing again. We figured it was the cancer in the lungs acting up again, but he couldn't get into the doctor's office to be seen. Besides, all they'd want to do is just start chemo again. He called our family doctor and had a televisit. That was a pain and a half to even get set up. After telling her his symptoms, she prescribed an antibiotic and told him to get tested for COVID. We knew it wasn't that, but he went anyway. Owwwww! He said that was worse than needles, and he HATES needles. The test came back negative, which we knew it would. He took the full round of antibiotics and the cough still didn't go away. A week before we left for Mexico, we went to the ER. It's the only doctor's office we could actually walk into and talk with a live doctor in person. So we went there, they ran a bunch of tests, we were there forever, as usual. They did another CT scan and found that the lung lesions were still increasing in size, but his breathing was fine, thank goodness. It gave us a baseline to go from when we went to Mexico. He still has tightness in his chest; we're hoping that these treatments will help all of that subside so he's not downing Nyquil every night to help him not cough in his sleep.

The flight to San Diego was great! The plane doesn't sell middle seats, and our seats weren't on the same row, so we went to our seats and when the person on my row came to sit, we asked if she would switch places with Scott and she graciously agreed. Then we had the whole row to ourselves. He scooted over to the middle seat so we could sit next to each other. The flight was great, only 2 hours, so much better than 12 hours of driving. We had to wear masks the whole time, but it wasn't that bad. We got used to them. When we arrived at the airport, there was a driver from the center waiting for us at baggage claim. We had a pleasant drive right over the border and he pointed out some sights, including Trump's wall. It actually looks more like a large metal fence than a wall. I took a few pictures and sent them to our kids and the driver commented in how that was Trump's wall that the Americans paid for and all the Mexicans built (since they were the laborers).😂 We got a good chuckle out of that. He also said that some guy posted a YouTube video of himself climbing it after it was done and he got up and over it in 20 seconds. It only took about 20 minutes to get to the center and when we drove up, honestly, I was underwhelmed! It's right in the middle of all businesses in an area that looks kind of ghetto. There was no sign and it looked really small. My initial thought was, We paid a lot of money for THIS?! Our driver escorted us inside and we were taken to their waiting room. We arrived somewhat early so we were waiting a while. But we were finally able to meet with a nurse and a doctor to go over Scott's history. Then someone from patient services came and gave us a tour of the facility and showed us our room. For as small a space as it is, they sure have done a great job of packing a lot of things in a tiny space. That sounds like an episode of Hoarders, but it's really not! The way the place is laid out, it still feels really spacious, even if it feels like a maze for the first couple of days. I am finally understanding where everything is and we've been here 3 days. It's just like a cruise ship, usually by about halfway through our stay, I finally have the lay of the land figured out. #directionallychallenged

 The first day was a lot of consulting with doctors. And Scott had his blood drawn and an ultrasound from neck to groin. We've met with a nutritionist also to go over some guidelines to help curb Scott's cholesterol, glucose markers and inflammatory markers, which are all high. The goal is by the end of his stay here, all of those numbers will be lower due to the diet he is eating. It is basically vegetarian, mixed in with fish. Scott is allergic to shellfish, but they don't serve that here, just wild caught stuff. We still have to be careful though. Our second day here he broke out in hives and we had fish for lunch. He had two rounds of Benadryl and a steroid, and it's under control now and the doctors are eliminating fish for the next couple of days to see if that was the trigger. They're giving him chicken instead, but he has to eat it in our room so the other patients don't get jealous. 😆

We met with a functional medicine doctor yesterday. That was powerful! He focuses on finding the emotional triggers to cancer. Did you know that 100% of cancer patients have some underlying emotional issue that has contributed to their cancer?! The type of trauma determines the type of cancer. It may sound silly, but it makes total sense to me. Do some research on it and your mind will be blown too. I think this will the most powerful treatment for Scott of all the treatments. We also meet with him again to go over supplements. We'll find out what kinds and how much he should be taking for his condition. Finally! This is something we've been trying to find the answer to for months, ever since his endoscopy. I finally feel like we're getting some traction and answers.

Scott's rash has subsided, so he can do some of the heat treatments today. They were holding off because the heat could exacerbate the rash, but now he can do them. His treatments consist of a lot of IV vitamin infusions, light therapy, heat therapy, emotional healing, laying in a hyperbaric chamber every day, coffee enemas, and lymphatic stimulation. He is also doing a natural kind of immunotherapy;  he'll start that next week. This kind of immunotherapy doesn't suppress your immune system like the ones in the states, it actually enhances it. The goal of the treatments here is to get your body to an optimal state of health so that the healthy cells will naturally fight off and kill the cancer cells. A lot of the treatments here focus on killing the cancer stem cells and enhancing the healthy cells. Chemotherapy just kills all cells, both good and bad, and hopefully the healthy cells regenerate themselves and the cancer cells stay dead, but that's usually not the case, unfortunately. 

I have learned so much here! Scott and I both speak Spanish so it has been fun to speak with the staff. They all know English as well, but they don't hesitate to speak Spanish with us if we speak to them. I love being surrounded by these sweet, loving Hispanic people. Everyone from the cute cleaning ladies, to the amazing food staff, to the awesome nurses and doctors have been so sweet and nice. You can really feel that they care about you here. Even the doctor's visits are thorough and they don't feel rushed. True, when you're in an inpatient facility like this one, there aren't as many patients and they can take the extra time needed for each patient, but it's still nice to feel like you're not being rushed to leave so they can see the next patient.

Well that's the latest, folks! So glad we have this opportunity to be here. I head back home next week and Scott will be here a total of three weeks, and he'll be sent home with an extensive at home program. They'll do blood tests and another ultrasound before he leaves to see if anything has changed. Fingers crossed that they will, for the better. He'll come back three months after he leaves for a couple of days to do the blood tests and the ultrasound again, and then again three months after that.

Thanks for reading! I'll post another update before I go home.

Hope 4 Cancer

Since the beginning of this journey, I have been doing a TON of research and finding out other ways to help Scott return to optimal health. I have shared many of those methods on this blog. Here is my story of how this Hope4Cancer journey came to be.

I was introduced to a documentary called The Truth about Cancer about a year ago through a friend. It was made by a man who lost both of his parents to cancer and he has made it his life's mission to educate people about cancer treatments and prevention. He has traveled the world and interviewed many medical experts, both in the conventional and natural medicine realms, and put them together in this documentary. One such expert he interviewed was Dr. Tony Jimenez, founder of the Hope4Cancer treatment centers. I was so impressed, not just with Dr. Tony's knowledge about cancer (he has been studying and treating it for 30 years), but by his compassion and love that emanates from him as he speaks. I knew from the beginning that he was someone we could turn to for answers. But I also knew that Scott was not yet ready to delve into this new undertaking. 

Let me give you a little background first. After our visit in January with the oncologist and our visit with the GI doc, we began discussing other options for Scott. We had gone to the cancer specialty center in our state and there was nothing they could do for him. We knew we were done with them. There are several other places that are considered cancer specialty centers that could probably get Scott on a clinical trial and we could definitely get a second, or third, opinion about things. One such center is the MD Anderson cancer center in Houston, Texas. I had been thinking about calling them to see what was available for Scott, but hadn't seriously looked into it yet. I received a phone call in February from a concerned family member who suggested that I call them and investigate other options. After all, it's only his life, yah? We need to do all we can to save him. At the timing of her call, I was getting ready to take my kids to a ballroom competition and I was still reeling over our experience at the specialty center close to home, when the doctor said there was nothing they could do. I wasn't in the best frame of mind and unfortunately wasn't very pleasant with this family member. But, after stewing it over for a couple of days, I decided that I would pursue that avenue. I'm grateful that this family member encouraged me to do so. It lit the fire under my butt that I needed. I got the ball rolling and emailed and called to see if Scott could come there. It was rather a lengthy process, with trying to figure out insurance and sending all his medical records and we kept running into obstacles. I wondered if this was even the right avenue to pursue and I called a dear friend who has been through this process (of helping a loved one battle cancer) before. I expressed to her that I felt like I wasn't receiving answers to my prayers as to which avenue to pursue and that I was just doing what I felt like we should, aka going through the motions, but I wanted a confirmation from up above. Was I just doing this to appease this family member's persistence or is this really what we needed to do for Scott? She told me something that was so powerful to me. She and I both served missions for our church and we became best friends after we returned home, so we really have a tight bond through our experiences as missionaries at the same time. She asked me to remember that as missionaries how many miracles we witnessed when we were specific with our prayers and how strong we felt the spirit because we were doing the Lord's work every day! Yes, I remember! I loved being a missionary and I was so happy because I felt His Spirit all the time. She then told me that it doesn't have to stop just because we aren't missionaries anymore. We are still doing the work of the Lord, just not full time anymore. We are still entitled to the same amount of revelation and the powerful spirit if we are specific in our prayers and ask God for specific answers. And then she added that if it's not meant to be, God would place a roadblock in our way so it would not be possible for us to accomplish that thing.  That helped me a ton and I continued to pursue the MD Anderson route, unless a roadblock was placed in our way. The day that the stay home, stay safe initiative was issued, they called back and said they had received all of the needed information for Scott, but they were not accepting new patients for the time being and they didn't know when they would be. They would contact us when he could come. Talk about a major roadblock! I texted my friend later and thanked her for her advice and told her about our roadblock. We haven't heard back from MD Anderson and if they ever do call us, we will tell them we are no longer interested.

In April, after Scott's last scan, he decided to be done with chemo. As I explained in my earlier post, he was frustrated that the chemo wasn't working and he was afraid that he would catch corona because of his weakened immune system. So he decided to be done, but knew he still needed to do something to help his body heal. That is when I introduced Hope4Cancer to him. Now let me tell you, I was nervous. I knew it had a hefty pricetag and Scott is not one to jump into expensive purchases without thinking about it A LOT beforehand. We had very limited information, except what was on their website and we knew they were located in Mexico. Why not the US, you ask? Because our wonderful FDA does not approve natural treatments because they haven't been tested. At least not according to their standards, but in my opinion, those aren't very high and very biased. So Dr. Tony has set up two centers in Mexico with proven, natural treatments that have very high success rates of HEALING people with cancer and returning their bodies to an optimal state of health. That's what we want, right? I had signed up to be on their email list a few months prior and they had just released a reality show which followed a few patients during their journey through the center. It showed some of the treatments that they received and explained the process in a different way than the website. I knew this would answer some of Scott's questions, so I presented this to him and he agreed to start watching the show with me. He looked at the website, but wanted to hold off on the free consultation until he had more information. After watching a few episodes, he called them and we found out we could get the COVID special, since everything had shut down and the economy was struggling, they had reduced the price. And they're open during COVID! In fact, their center has received multiple 5-star ratings from the Mexican health department for cleanliness. They were amazed at how clean this place is. That's saying something.

So now we had to decide how to come up with the money to pay for this amazing place. We had the money. At the beginning of the year, we had withdrawn a large amount of money from some of our investments. It was like a loan from ourselves that we didn't have to pay back. We withdrew it to cover the cost of the natural treatments that he was already doing. It was almost the exact amount of what was needed to go to the center. However, if we used all that money our savings would be wiped out and we would have nothing left. Scott was concerned about using all of our money, and I told him not to worry. I would set up a GoFundMe account to raise half of the money and then we would have some leftover money as a buffer in our savings. I was confident we could raise the money.  Scott set up the date to go to the center and I set up the GoFundMe account. Scott was still hesitant to do it; it is difficult for him to ask for help. I told him that since the beginning of this, people have approached me asking how they can help, and I knew that this was a way, whether by contributing, or spreading the word, or both. I set up the account on a Saturday. We got the COVID special for that too! 😃 In less than 24 hours, we had raised almost half the amount and in less than a week we had raised almost the entire amount! As I continued to spread the word, one person told me to raise the amount of money we were asking for so people wouldn't hesitate to donate if they saw that we were almost there. I increased the amount and by the end of the fundraiser, we had raised our initial amount, and then some! Thank you, thank you, thank you to everyone who contributed and/or spread the word! We are completely overwhelmed by everyone's generosity and these next few blog posts are for you, so you can know what your generous contributions are helping with. We love you all so much!  I know this is where we need to be right now. No roadblocks getting here!

Latest updates and my thoughts on Coronavirus

Wow it's been a long time since I've updated this! Honestly, I didn't want to. It was the same old same old and when the winter months hit, I retreat into myself and don't want to emerge. I probably have a touch of seasonal affective disorder (SAD) and then add Coranavirus hibernation on top of that?! No thank you!

So Scott had his colonoscopy and endoscopy on Valentine's Day. He was able to get the same doctor. We were happy to see him again and he was happy to see us. He commented on how romantic our Valentine's date was 😄 and also how Scott had lost a lot of weight. I couldn't tell if that was a compliment or not. He'd lost about 30 pounds at this point and I think he looked good and was at a healthy weight, but maybe I'm the only one. After meeting with the doctor for a few minutes, I went to wait in the waiting room until he was done. I'd only been out there a few minutes when the nurse came hurriedly out to get me. My first thought was, Oh no, something has happened and he's gonna die. The nurse didn't say anything as we walked quickly back to the room. As she opened the door, she said that the doctor said it would be okay for me to watch, and asked if I wanted to. "Heck ya," I replied. (I'm so glad it was that, and not my original thought). Yah, I'm weird like that. Medical stuff is kind of fascinating to me. So I got to stand there and watch as the doctor guided the tubes. First we looked at the endoscopy, which was a tube down his throat. He showed me several bleeding ulcers (hmmm) and he said his stomach looked like hamburger. Then he asked me if Scott was taking any vitamin supplements and I proceeded to tell me that he shouldn't take so many because they can be hazardous to his stomach. I wanted to ask him what vitamins he should take, but thought that should wait for another time, when my husband was coherent enough to be part of the conversation. Then the doctor showed me the inside of the colon. He showed me that the tumor is still there, but so so so small that it's almost nothing. Yay! He then showed me that the polyps that he had last year were really small too and he removed what was left of them. Overall, his colon looked fairly healthy. It was his esophagus and stomach that he was concerned with. Along with the ulcers, he also found that he has a hiatal hernia. The opening to your stomach has a flap that is supposed to stay closed unless food is entering into it. Scott's is open all the time and part of his stomach is pushing up into his esophagus. I know, kind of gross, but that explains the acid reflux that he has had FOREVER and been on medication for. At the time of his endoscopy, he hadn't been taking the medication and had been doing a number of natural treatments, and found some relief, but not a lot. The doctor suggested he continue to take his medication and he actually increased the dosage to four times what he was taking! (We got that fixed the next day when we called his office. Scott found relief from taking just the regular amount he had been taking.) After Scott came out of anesthesia, he came in to talk to us. He explained about the hiatal hernia and when I asked what could be done, he said surgery could be performed but he wouldn't do it now because of Scott's condition. Of course! Scott wondered if the issues he had with his stomach could be related to the chemo. The doctor said there's no way to know unless he had a totally healthy stomach in the first place and these issues only happened after he started chemo. That makes sense. Then he suggested that he lay off the vitamin and mineral supplements but was very vague as to what amounts, if any, he should be taking, which is understandable because he's not a nutritionist. I called his office the next day with some follow up questions and his assistant suggested some supplements we could buy online for gastric bypass patients (which he's not, but does has some of the same issues as them) and also told us to follow up with his oncologist. Uh, no, I thought. An oncologist will not know about vitamins! More frustration came when I found out that nutritionists, who do know a lot about vitamins and how much we should take, etc., are NOT covered by insurance. Of course! I was talking with a neighbor a few days later and she said she used to work for a doctor's office who had a nutritionist as part of their family practice clinic and insurance would cover that. Yay! Another tender mercy. I called and we made an appointment with her. She was helpful and she did a bunch of tests on his blood and went over the results with us. She didn't know if he should be taking more or less of certain supplements as a cancer patient. Did you know that if you have cancer your body needs more of certain vitamins and less of others? I found that out in my research since the procedure with the GI doc. Until we meet with an expert in cancer nutrition, which is another thing on the list, Scott will just take the basic vitamins that she suggested, but he's not going to stop all together like the GI doc suggested. He needs SOME nourishment besides just good food if his body is going to heal properly.

So basically, in a nutshell, the last few months have been more questions than answers, which is par for the course. Scott did four chemo treatments, from January through March, with the new chemo drug, but after his last scan in April, when it showed that things weren't shrinking, he decided to be done. Part of his decision was because of COVID. If chemo treatments lower your immune system, and people with a lower immune system are more susceptible to COVID, than why bother? It wasn't working anyway. He didn't want to add COVID to his list of health concerns.

So these are my thoughts on COVID and the self-quarantine and social distancing that have been happening for the last few months:
1. Welcome to my life! Being extra cautious about germs, and distancing ourselves from others in an effort to keep Scott healthy has been something we've all been doing for over a year. True, our kids are a little more willing to wash their hands often now that "everyone else is doing it," but our life hasn't changed that much, except for the at-home school part and not hanging out with friends as much. I actually enjoyed having my kids at home for school. My ninth-grader was struggling in school, both academically and socially, so I was so relieved when he got to spend his last quarter of the school year home with me. And he passed everything with decent grades. 😃
2. Whether you're an introvert or extrovert, we all need people in our lives, to help us connect and even to heal. Some people need more social interaction than others. For me, I know I'm an introvert, but I also know I still need other people in my life, besides my immediate family, once in a while. I'm sure many people have used social distancing as an excuse to NOT interact with anyone else, but sooner or later, you have to have human interaction. Even Tom Hanks needed his friend, Wilson the volleyball, when he was stranded on a desert island.This social isolation has gone on long enough, and I'm glad things are slowly opening back up, with added safety precautions. I hope we've all learned to take extra precautions to stay safe. And for all those who have experienced depression or anxiety during this time due to all the changes and/or social isolation, I get it and I'm here for you.
3. The BEST part of everything shutting down has been that we can have church together as a family. Since Scott's diagnosis, he's only been a handful of times with us and after our oldest son graduated high school he started attending a church in a different area with his single adult friends, so it's been fantastic to have church in our home all together. I'm fine if it stays that way for a LONG time. I'll just do the church thing when there's a social activity and continue to worship at home with my husband and kids.

Boy it felt good to update the blog, finally! Now that I have soooo much more time because I am on vacation (sort of) away form my kids and crazy life. The next few posts will be about our adventures in Mexico at the Hope4Cancer Treatment center. It has been an amazing ride just getting here and we have seen so many miracles in this process. I'll explain more in future posts. For now, thank you so much for reading this! Until next time!

Holiday fun, scan #4, & IDK

IDK = teenage jargon for I don't know, aka what our 14-year old says all the time. Well, it is now my new catch phrase, because IDK!

Here are the latest updates:

• Scott took a break from chemo from October through December. He was sick of the neuropathy and wanted more energy. We continued to do Vitamin C infusions religiously three times a week in November and December, hoping it would shrink the tumors and act as a "natural chemotherapy." IDK! I guess I took a break from blogging too. I just didn't feel like it.
• We enjoyed a wonderful holiday season. We had our annual family Black Friday Thanksgiving feast with Scott's side of the family. It's easier to do it that way every year than to try to coordinate things with in-laws for every other year and yada yada. It snowed A LOT that day and made travel almost impossible, but luckily our feast was not too far away from our home. Christmas time was full of office parties, I think we went to 4 or 5 of them. It was fun to see Scott interact with his co-workers. He works for a really good company. We had a wonderful Christmas at our house with our kids and my mom. She's all by herself so I invited her to come over and spend time with our family that day. The kids enjoyed showing her their new things, playing games and watching movies with her. We had our New Year's Eve party a few days early, as the in-laws were in town for our oldest son's priesthood ordination. He is preparing to serve a mission for the church and that is a necessary to take before serving. It was a wonderful time to spend with family.
• Scott's next scan was on December 30th, before the calendar ended. Gotta get all those tests for free since we reached out deductible, right? He had a PET scan this time. I requested it. The results are supposed to be more accurate. It took longer than his CT scans. We were expecting just an hour and we were there for a few hours, but we were glad we could get this test done and were hoping to have more thorough results this time. When the nurse was prepping him, he said it's standard procedure to usually have one when you're first diagnosed so the doctors can be more certain of the diagnosis. Hmmm, I thought, they dropped the ball on that one with us. Why wasn't Scott given a PET scan at initial diagnosis? IDK! Another question for the doctor when we meet with him.
• At the beginning of each new year, my mom always comes up with a saying that rhymes with the year. It's kind of a fun tradition. I made up my own saying for this year. "No more cancer honey, in 2020!" We hope that's the case. 🤞 IDK!
• On January 2, we met with the doctor to go over the results of the scan. Our appointment was in the afternoon and we had family in town from out of state and they wanted to go sledding. They don't have snow where they are so this was an adventure for them. They invited us to go. I was glad for the distraction; even though I'm not a fan of the snow. So why do I live here? Good question. I wonder that myself every year. I wish we could buy a beach house somewhere and hibernate there during the winter. We enjoyed a wonderful day of sledding; I can't remember the last time I went. It was a really good stress relief. We found a good spot and the kids had so much fun with their cousins. We dropped the kids off at home, changed and headed to meet with the doctor.
• Since Scott had been off chemo for three months, we didn't know what to expect. IDK! The doctor told us at the last appointment with him that the tumors probably would grow, but we'd just have to wait and see. Before he pulled up the scan results, he said that the results of this scan had been compared to the results of his original scan (almost a year ago) and not the scan in October. We went to a different center for his PET scan and they are in the same network as the hospital where he originally got his scan, but they didn't have access to his other scans because they are from a different company! Really?! I guess we'll have to go to the same place every time now! The doctor had revised the results earlier that day, writing an addendum to the written results from the December 30th scan. He compared them to the October scan and the two results were compared. He showed us the PET scan and we could definitely see the really bright spot in the liver; an indication of tumor activity. The brain was also bright orange, but the doctor said that is normal. Those were the only bright spots we could see. According to the written results, the "pulmonary nodules are increased in size and number." How is that possible if they were never even counted in the first place? I think. The results have always said numerous, many or innumerable. IDK! The report also said that the there is a lesion in the liver that has increased in size, although no measurement is given, which it has been in previous reports. Still appears to be no evidence of colon tumor and an enlarged lymph node has remained unchanged in size. According to these findings, that means disease progression and that Scott will qualify for an investigational medication at the specialty hospital. That doctor is out of town and we will meet with him when he gets back. The hospital will call us the next day to set that up. We leave feeling rather down-hearted. They called later with Scott's blood results and the tumor marker numbers were a lot higher than the previous month's numbers. More disheartening news. 
• The specialty hospital called the next day and set up an appointment for the 15th, a little less than two weeks away. I guess all we can do is wait. That's all this seems to be so much of the time, just a waiting game. 
• January 11th is the year anniversary of his initial diagnosis. I have a girls' retreat planned with some girlfriends. I enjoyed an amazing weekend of bonding, laughing, hiking, eating, games and many other amazing activities. I come home feeling refreshed and rejuvenated. It was a wonderful distraction!
• On January 15th, we headed up to the specialty hospital. It is a year and one day from the initial visit with the oncologist when he laid it all out for us. That was the gut wrenching day! Will this one be the same? The hospital asked us to arrive an hour before our appointment time so we would have time for blood work results to come back before we met with the doctor. We under estimated the time that it would take us to get up there and arrived 20 minutes late. Well, now they know how we feel when we have to wait for them. Little did I know how much waiting we would still be doing. After 40 minutes of waiting just for blood work, they finally called us back, only to find out, surprise, surprise, there was no one available to access the port! They would have to track someone down. We asked them if blood work was even necessary since we got it done less than two weeks ago with the oncologist. They said they needed their own blood work. Back to the waiting room we went; 20 minutes later they called us back and he finally got blood work done, 10 minutes after his actual appointment time. Were we going to have to wait another hour before we met with the doctor in order for him to go over the results with us? They told us no and would get us in the next available room and would bring in the results when they were ready. It was almost closing time by now. I called our son and asked him to make dinner for his brothers; I didn't know when we would be home. The doctor came in shortly after and began rattling off information so quickly we could hardly understand him, despite his thick accent. He showed us three different scans side by side and showed us how one of the lung nodules had increased in size. He said he agreed with Scott's oncologist that the disease has progressed and that he needs to start another round of chemotherapy with another drug cocktail. However the drug that we originally talked to him about last summer is no longer offered and he no longer qualifies for the experimental drug. He can come back when his body no longer responds to the new drug cocktail and the drug he can offer him may prolong his body's immunity to the chemo treatment by a few months. What the ???? Did we hear him correctly? IDK! We asked him all of the questions that we had and he was very abrupt with his answers. Could his cough be the result of acid reflux instead of tumors? Possibly! Can they do any tests for that? It would be pointless! Will surgery for the lungs nodules ever be an option? No! Is radiation an option for the liver tumor? No! So basically you're telling us that we're back to square one and he needs to be on chemo for the rest of his life?! Silence. At this point I lost it! No more sitting there in total shock like last year. The tears of frustration just started flowing! I had a meltdown in the doctor's office and I said "I either need to punch something or leave." All of my feelings from the last year came bubbling to the surface and I felt like we had just wasted the last year of our lives. Why did Scott have to endure this poison going into his body? So he can have a few more years with us? The rest of the visit is a blur to me. I just wanted to get out of there. As we were leaving, a nurse came in and said there was a problem with the tubing and they would have to do the blood work again. "No," Scott said rather forcefully and we left. As we were driving out of the parking lot there was a big sign on the fence with the cancer center's name on it and then the words, Center for Hope. "Yah right!" I said to Scott. He agreed. During the drive home, he expressed that that visit was a total waste of time. "If he knew I wouldn't qualify for that medication, why didn't he just call my doctor and tell him that? I could have just started the new chemo last week and not bothered coming up here." We both agreed we're not paying the bill when we get it.
• Scott called his oncologist the next day and set up an appointment to start the new chemo drug the following week. It drained his energy and made him a little more nauseous than the previous drug, but the neuropathy is dying down and he is glad for that. He got hives around his mid-section about a week later and we called the nurse. She wanted to see him the next day. We went in to see her and she gave him a prescription from the doctor for some steroids and explained that it could just be a fluke thing or it could be chemo related. There would be no way of knowing unless it happens again. Scott's cough is getting worse and the chemo doesn't seem to be helping, like it did last year.
• Two weeks later Scott had his second chemo treatment and we talked with the doctor beforehand. We told him of our horrible experience with the specialist and he was really surprised. He was very understanding though and took the time to answer all of our questions. I still had some questions about the scan and he answered them. We presented him with information we had found about Vitamin C trials in other states and asked if he could spearhead something like that in our state. He said it is a very long process and could take years, but he would read the article. If we still want to do the vitamin C injections, we'll just have to keep paying for it out of pocket. We talked about the hives and he said the same thing the nurse had told him the week before.  IDK! We talked to him about Scott's cough and asked if it could be acid reflux related. He said that's a strong possibility and that we should go see a GI doc. Yay, progress! We request that Scott sees the same one that gave him his original colonoscopy. He was very kind and compassionate. He put the order in to have his office reach out to us. 
• As of today, Scott still has the cough but he is scheduled to go in tomorrow for an endoscopy and a colonoscopy. Doesn't that sound like a great way to spend Valentine's Day? I hope we can find some answers for his acid reflux and he can find some relief. IDK! We have plans to go see a thoracic surgeon also to see if he can remove any of the lung nodules. We didn't tell the doc this though. We're tired of being told that it's probably not a good idea. We feel that we need to cover all our bases and try different routes than just chemo. Leave no stone left unturned, right? We hope to see if he can meet with a radiation specialist also. Scott's hives came back today; it's been a week since his last treatment so it most likely IS chemo related, but IDK!

Things that are helping:

• Girl time for me. I've decided I want to do something at least every month. After the girls retreat last month, I know that I need that to feel refreshed and recharged. I have another day long event coming up next week that a friend of mine has put together and I am so looking to soaking in the wonderful atmosphere that will be there. I have ones planned for March and April also. :)
• Scott is making his bucket list. At first he didn't want to because he thought that meant he was giving up and accepting the fact that he may not have much longer, but really I think now he just realizes that he needs to live life to the fullest, whether he's dying or not. We filled out forms to get new passports and got our pictures taken for them today. We'll plan to go somewhere fun soon. And we're looking into taking another family cruise at the end of this year. :)
• Continuing to learn and apply all we can about ALL facets of navigating the cancer journey. I feel that last year was our practice round and now it's time to step it up a bit. Don't be afraid to do whatever it takes to help Scott get better. We're still striving to rely on the Lord for guidance; He's definitely strengthening us. We're trying to still recognize His hand in our lives. 
• Still tons of prayers, text messages, phone calls, acts of service from loving family and friends. You just don't know the effect it has on us. We love you all so much and have encountered so many wonderful angels throughout this journey. 

Yay, now I'm up to date on our lives. Thanks so much for reading the blog! The following link is something I found a while ago that made me feel empowered and strengthened.  Hope you enjoy.

https://www.linkedin.com/pulse/never-apologize-being-strong-woman-andrea-heuston