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