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

Scan #3 and results

FEAR

In episode #149 on the podcast Better Than Happy, the host, Jody Moore, defines fear in the following ways:

1) Fear is a gift.

2) Only humans can create fear by thought alone.

3) Fear exists about things in the future.

4) Come back to the present to minimize your fear.

5) The brain does not differentiate between physical and emotional danger.

First of all, you should check out the podcast. It's a good one. Secondly, I don't think it's a coincidence that that episode was the next one for me to listen to, even though it was recorded over a year ago (I'm listening to them in order from start to finish), and I just happened to listen to it a few days before Scott's next scan. It definitely gave me a lot to think about, and was very reassuring. There's nothing we can do about the results; just deal with it and don't dwell on them. 

So without further ado, here we go.........

His scan was originally scheduled for two days before we talked to the doctor. They called and rescheduled to the day before because that's when they'd have a person there who could access the port. At least there will be someone; better than last time. What a fiasco! And at least this time we'd only have to wait about 24 hours, instead of a week, like last time! Way to much scanxiety for me, and probably Scott too! We definitely learned our lesson after that one. It would still be nice if they had more people who can access a port. I'm not a nurse and I know how to do it. They could seriously have a workshop at the hospital and nurses could learn and practice how to do it in a couple of hours. That is another suggestion I may include on the survey that they always send out when we visit. Anyways, I digress. I do that a lot -- it's fun!

We went to the imaging center yesterday and the doctor who knew how to access the port had to be tracked down. When they finally found him, he asked Scott what he was getting a CT scan for. Scott told him colon cancer and he asked how old he was. "Young!" I said at the same time Scott told him his age of 46. The doctor said he was 47 and he hasn't had a colonoscopy yet so he was going to get one. After both of us reassuring him that it was a good idea, he casually mentioned that the screening age has been lowered recently to 45 instead of 50, regardless of family history! Which means that if there is a family history you can get scoped at 40 and insurance will pay for it. Hmmm, I thought, they're finally getting the picture. Maybe if that had been the case with Scott we could have caught this earlier. After struggling awkwardly and having to poke him twice to access his port (it seemed like he didn't do it very often), the doctor got it hooked up and they whisked him away to the scan. Fifteen minutes later he walked out, we got the CD and headed home, trying to stay busy over the next 24 hours as we wait to go over results with the doctor. I went out to lunch with my sweet neighbor, who's also a good friend, and it helped immensely to take my mind off things. We visited while enjoying some delicious food and then went to go buy some Halloween decorations afterward. Thank you, sweet friend. I am truly blessed to have you in my life.

We met with the doctor the next day. Scott had already made up his mind that whatever the results were, he wasn't getting treatment that day. He's really sick of the neuropathy and wants to take a break through the end of the year. When the nurse called him back to get his blood work, we were pleased to see that it was the same nurse that he had for his first chemo treatment. We were all excited to see each other again; she seems to never to be there when he has his treatment on the day we meet with the doc. When she asked him about which needle he preferred, he told her he wasn't getting treatment that day, so it didn't matter. "Well, look at you, acting like the patient, or something," she sarcastically replied. :) She took his blood and we went back into the waiting room to get called back to talk to the doc. They called him back quickly and we didn't have to wait very long for him. That's never happened before. Yay! Maybe the rest of the day will go as quickly.

When the doc came in, he pulled up Scott's results and said he had just gone over them with the radiologist at 6:00 the night before. They notes were very brief, so he double checked to see if they were for the right person. They were; this radiologist just wasn't as verbose as the others. The tumor in the colon is still undetectable; the liver one was still continuing to shrink. The lung ones still haven't changed. Scott didn't waste any time letting the doctor know that he wanted to take a break from chemo through the rest of the year and asked if he could get another scan at the end of the year. The doctor agreed to that and Scott pulled up the calendar on his phone and said, "How about December 23rd?" "You want to do it before Christmas?" asked the doctor. "No!" I replied before Scott could. "How about the 30th?" "Sounds good," said the doc, so we scheduled it for then. I also mentioned that we'd probably come to his office to get the scan because the one closer to us doesn't have people there who can access a port. The doctor said he would mention that to someone and suggest they train more people at that location to be able to access a port. "That will be very helpful, thank you," I said. We left an hour later, instead of four hours. It was a great feeling. 

So, in a nutshell, Scott will not receive any more chemo treatments this year and he'll get another scan on the 30th, and we'll meet with the doc after the beginning of the year and reassess. The doctor said he would put aside personal feelings about Scott's decision and hope that the tumor didn't increase in size during the lapse in treatment. It's not really a lapse in treatment - he'll still continue to do all the natural stuff he's been doing - it's just a lapse in chemo. I hope it's forever, but know it's a personal decision that only Scott can make. All I know is, if I ever get cancer, I will not get chemo. I don't want to poison my body! Call me a weirdo, a quack, one of "those" people, but I won't do it to myself. Traditional medicine is not the only way to treat cancer. This will be a good opportunity for us to see how these natural treatments alone are helping him fight the cancer.    

The next day the kids were out of school for fall break, and the day after that we headed about 3 hours north of us to enjoy some family fun at a lake house that belongs to a friend. It was beautiful! We had fun, despite the cold; autumn seriously only lasted about a week until winter decided to come, so the second day we were there the snow came and we didn't go outside too much. We definitely want to go back in the summer. There are so many things to do there. 

Since we've been home, Scott has been catching up on work. He worked for twelve hours yesterday; I told him it's ok to take a break. He has seemed really tired and sullen for the last few days. I think his body is on detox from the chemo. 

So that's the latest folks! Sorry I made you wait. So many people have asked me in the past week what the results are. I'm really trying to be better about staying current on this, but life happens. Love to all!

Chemo Day

All this stuff is yesterday's news by now, as it happened yesterday! 😆

Did you ever watch that show Fixer Upper with Chip and Joanna Gaines on HGTV? Do you remember how Chip would get so excited on Demo Day, and he'd go around shouting/singing/declaring "It's Demo Day?!" Yah I think I have the exact opposite reaction when it's chemo day! Seeing as how this might be Scott's last chemo for a while (hopefully forever), I was planning on going with him, even though it was the off week with the doctor. I even said no to an appointment with my mother in order to have the morning free to spend with him. Well, let me tell you, my body had another idea!

We were all ready to go at 7:30 AM for his 8:00 AM appointment. After the kids left for school we drove down to his appointment and as I was pulling into the parking lot, my stomach began cramping up. It was like really painful indigestion mixed with menstrual cramps. I figured my breakfast didn't agree with me and it would pass. We went inside and he got checked in and as we went to the waiting area, I felt like I was going to pass out! The pain was so bad! I couldn't sit down; I couldn't stand up straight. I just kind of wriggled there in the waiting room, trying to find a comfortable position, hoping it would pass. Scott told me I should go home and get some rest and he'd call me when he was done. I didn't want to. I had planned to be here with him. My stupid body wasn't going to stop me.  After about 30 more seconds of painful abdominal cramps, I decided it was best if I went home and tried to rest. I kissed him goodbye and left just as they called him back. We were right by the hospital; I was tempted to just go into the ER and see if they could help me! I decided to just tough it out on the drive home. That was very uncomfortable! I could feel my face and head getting really hot and I started to sweat. I started to feel nauseous and like I was going to throw up. I decided if it didn't pass after I turned the corner I would pull over and puke on the side of the road. The nausea subsided long enough for me to get home, but just barely. Luckily we don't live that far from the hospital, but it was still a long three minutes! I tried to breath deep even breaths to keep my body relaxed ans I drove home. When I arrived home, I bolted upstairs and made a beeline to the toilet! Nothing came up, despite my continued cramping and nauseous feelings. I stayed in the bathroom a few more minutes and then decided to get the heating pad and go lay down.

I put the heating pad on my stomach and lay in the fetal position in my bed for about an hour. The pain subsided after about ten minutes. I just lay in bed and rested and wondered what was going on! Was I having sympathy pains for our daughter and her ovarian cyst, or was it an actual cyst that had burst? Did I have a bladder infection or UTI? Did I have some weird bowel obstruction, or a tumor on my colon that was flaring up? Or was it just some weird psychosomatic thing that manifested itself in response to Scott's chemo day? Whatever it was, I felt a lot better a couple of  hours later when Scott called saying he was done and asked if I could pick him up.

Whatever was going on, it went away! So weird! I'm still trying to process it all and learn what I need to from this. It was really nice to just lay in bed and relax and contemplate things. I don't do that much, but that's kind of on purpose. It's easier to just stay so busy that I don't have time to think about it.

Scan #3 is scheduled for October 15th. Please send prayers, good thoughts and vibes, warm fuzzies, etc., our way in the meantime. Meanwhile, we'll just keep doing what we're doing - trying to eat healthy, continue to learn new things about how to treat cancer naturally, continue to improve our overall health, enjoy spending time with each other (for the most part) and trying to notice God's tender mercies in our lives. Here are some that have happened since my last post:

• A sweet neighbor and friend delivered a big bouquet of flowers to our daughter and gave me some delicious, healthy chocolate because she knew we needed a pick me up. 
• A friend who I occasionally visit with texted and suggested we get together since it has been a while. We were able to get together today and enjoyed a lovely walk together as we visited about everything under the sun and then some more. 
• A random neighbor left a bag of delicious nectarines on our front porch and another one delivered some cookies as a thank you to our 11-year-old son who delivered some to his house with his scout troop last week. I love people's goodness.😊 

Miscellaneous ramblings

As I write this, my kids are "settling" into bed, (yah right, they'll only be settled when they are fast asleep), while my husband IS fast asleep. (It's not even 9:00 PM.) He went for a run today and tripped on the uneven concrete and fell. I admire his desire to stay active, but maybe just walking or stretching or yoga will be a little less hazardous. I hope we can find something to help him feel like he can exercise a little bit; he feels useless and isn't used to such a sedentary lifestyle. I hope he gets some good rest. He'll be up at 5:00 AM, as usual. It's OK to sleep in if you're not feeling well.

Here are some updates since his last chemo treatment: His CEA number (the number that measures his liver tumor activity) has risen a bit in the last few months. The lowest it's ever been was 47; at the last doctor's visit it was in the 70s. The doctor isn't too concerned about it, if it were in the 100s, maybe. It's an easy way to measure the vitality of the tumor instead of doing a scan every month. We talk to him again on October 16th, two days after Scott's next scan.

He finished all the Vitamin C infusions; the naturopath doctor wants him to continue doing them until after the next scan, if not even longer. We sent in the receipt to our medical insurance company for a possible reimbursement. They wouldn't cover it initially, (surprise, surprise!) so we're hoping if we submit the paperwork correctly they will. It was close to $1000 for all the supplies and the medicine. Have I mentioned how much I wish we could just be covered for all of our medical expenses? Insurance premiums are through the roof and it only covers some things?! It's the dumbest thing ever.

We found out a little over a week ago that our daughter has an ovarian cyst! She was in so much pain during and after her menstrual cycle and was throwing up about every other day for two weeks! I finally took her the doctor to see what was going on. He was very thorough and asked a gazillion questions (which I'm grateful for) and ordered an ultrasound and blood work. So last Friday night was fun! Instead of going to a friend's son's wedding reception, we were getting tests done at the hospital. All the blood work came back normal and the only thing they found was a super small cyst on her left ovary. We followed up with an OB the next week and she suggested birth control or an IUD to help lessen the cramping. We're also going to Scott's naturopath doc to see if he has other suggestions on how to prevent them in the first place, or control the symptoms.

She felt well enough to go to the homecoming dance last Saturday, eight days after her hospital adventure. She went with a boy whom she befriended on the first day of school; he was sitting all alone at lunch and she invited him to come eat lunch with her group. This is his first year at the school so he doesn't know any of the kids. He has been homeschooled for most of his life due to health problems. Asking her out was a big deal for him; it was his first date. She was hesitant to say yes at first because of his social awkwardness, but I am proud of her for stepping out of her comfort zone and seeing the best in him. They had a wonderful time and she said he was the perfect gentleman.

We enjoyed a dance concert tonight for my nephew. As we were driving to his high school, a song came on the radio that our whole family enjoys and our daughter and 11-year-old son began to sing the words together. If I hadn't been driving, I would have recorded it. Their voices blended really well together and they kept looking at each other and smiling as they belted it out in parts. Cherish these precious moments, I reminded myself.

The kiddos are now all asleep; I'm fighting to stay awake myself. So my departing thoughts are these:

• Earlier this week I watched Wonder Woman with my boys and it reminded me yet again that love can change the world and through it we can find our strength. 
• Today Kelly Clarkson sang on the radio "I'm Broken and it's Beautiful." It was very empowering. We're all just a bunch of broken people doing the best we can. Embrace your "brokenness" and use it to help uplift others. 

Peace out, good night! :)

Dusting off the blog shelf

Ok, it's been WAY too long since I've posted. I realized recently why that is. I'm working with a life coach, who is phenomenal, by the way, and in a recent session she mentioned that in our life we have buffers, which are like ways for us to escape from all the stress and anxiety of life. These can be things like substance abuse, binge watching TV/movies, shopping, social media, and NOT doing something productive because you claim you don't have time. WHOA! MIND BLOWN! That was a major light bulb moment for me! Why am I not updating my blog? Because I have to think about this big life circumstance when I do it and I don't want to, so I'll just escape to social media or the busyness of life. The life coach then went on to instruct us how to make goals to eliminate or lessen the time we spend on these buffers in our life. As a result of this guidance, I have made a goal to update this thing at least weekly. It's ok if it's not very long, if it's not grammatically perfect, or if it doesn't make sense. I just need to do it, not just to keep everyone updated, but also to release the stress/frustration/anxiety that I/we experience from this. And if I don't update regularly, I get calls/texts/emails from concerned, loving friends and family members wondering if everything is all right. (Thank you for those, by the way). So here's to re-commitment.

I think chemo #16 is this Wednesday, but honestly I've lost count. I know we talk to the doctor that day. All the treatments seem to mesh into one; it's just our life now. The plan for now is that Scott will do a few more chemo treatments until the next scan next month, and no matter what the results are, he's going to take a break. He's been a total rockstar through this whole process - bearing patiently through all the discomfort and pain, and always with a smile on his face. 😊 We celebrated Scott's 46th birthday in style last month; I threw him a surprise party and invited the whole neighborhood plus his office plus all of the family. There were about 200 people there total and I think he really felt loved - that was the intent anyway.

I've been giving him Vitamin C infusions at home, per his naturopath doctor's orders. We have two nurse friends in our neighborhood who have come to help every time and they have been great. I can do it myself, I would just prefer that someone else pokes him.  We had one scheduled last week and neither one was able to come and we couldn't reschedule, so I did it, and, if I do say so myself, I did a good job! It's definitely not something I ever thought I would do, but when something needs to be done, I  figure out a way to do it. He has four more treatments to do, and then we'll follow up with the naturopath to see what's next.

We met with the cancer specialists shortly after the last scan. He doesn't qualify for any trial medication as of right now because the current medication seems to be working to shrink the tumors. The trial meds are only if the current meds don't work. The doctors at the specialty clinic were all very friendly and thorough and we felt extra special when we were there. They went over all the scan results when we were there and it was really helpful to see them side by side to see the progress of the tumor shrinkage. And the best part of the visit is that the doctor is from Spain, and since both Scott and I speak Spanish, we got to speak Spanish with him. That was fun! 😉

I've listened to (since I don't have time to sit down and read) two really cool books since I last posted. The first one is called Girl, Wash Your Face by Rachel Hollis and the second one is called Educated by Tara Westover. They're both so good! They are the real life experiences of these women and their process of self-discovery. I admire them so much for being vulnerable and opening up about their lives, hardships and growth through these experiences. I remember telling a friend a while ago that I'd like to make my blog into a book someday, and she said she'd buy it. That was super validating for me. I'm glad I have these two great examples to turn to, as well as many others, of weathering the storm and coming out stronger on the other side.

I think I'm FINALLY at peace with being released as the Young Women's President. That may seem like it took a long time (Gosh, just get over it already, was a constant thought in my head for months!), but it took as long as it needed to for me. Going to church was already hard enough without Scott, and now that I didn't have the girls as my soft place to fall, it was even worse. I honestly questioned what was the point in attending if I couldn't be with them. Then one day in the kitchen, I had an epiphany. All of my hurt feelings and resentment and sadness were just gone. I shared this with my daughter. "Good job, Mom!" she said and gave me a fist bump. I also had a conversation with a ward leader about how I was still struggling with trying to understand why this happened and felt like I was short-changed because I wasn't in as long as I thought I should be. His comforting words helped me to realize that I can still be there for the girls, just in a more passive way. That's really hard to step back from it when you were so invested in them, I think. But just because you don't have the calling, doesn't mean you can't minister and touch their lives in a way that only you can. Even though my heart still longs to be with them at the weekly activities (they were seriously the highlight of my week) and in the Sunday lessons (which are so incredibly spiritual as a small group), I know that my influence can still extend to them in other ways. They will always have a special place in my heart and will always be "my girls." 💗

More things that I've learned since this journey began:

• Having the heart to heart conversations aren't always easy, but they're so worth it.
• Sometimes unplugging and just goofing off together is the best therapy. 
• Hiring a housekeeper and a life coach are two of the best decisions I've ever made. 
• Strength is not something you have, it's something you find! 😁

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.