Happy New Year to all my friends and family!
“New Year’s Day is a good time to fix one’s eyes on the only One who knows what the year is to hold.” Elisabeth Elliot
2016 has not been the easiest year for Jeffrey and I. However with Gods grace we have made it through the year and come out stronger on the other side. I have learned so much about myself, God, Jeff, my family and friends.
Many people say to me, we are praying that God will heal you. I love every single person for every single prayer they have sent heavenward for us. I want to be thankful and say that God brought me to a new point in my journey. If He decides not to heal me, I will be okay with it. If He will, Praise the Lord, if He doesn’t, that’s fine too.
I am continuing to learn and grow trough this path He has put me on. If He decides I am going to stay on it, it is going to be because He is not done teaching me yet. I found the verse in the picture as the new year started. I want to make this my daily reminder. “The Lord is with me like a mighty warrior”.
He will be with me, every step of the way. Even when I can’t feel it, I know He is there and He will fight this fight with and for me. When I am anxious, I know He will be there fighting my anxiety. If I am worried about test results or what to do next, He will be beside me fighting through every decision.
He hasn’t given up on me, on the contrary, He has chosen me to fight this fight knowing He will be with me. Hence why I can say “Happy New Year”.
A glimmer of hope – yet staying realistic
The best way to describe the last little while would be a roller coaster of emotions with lots of ups and downs. Let me start at the beginning and take you on this roller coaster with me.
When I returned from my trip to Disney, I found a couple letters in the mail from the Cross Cancer Institute with my next appointments. It took me a little while to make sense of all the things written there. Turns out they booked me in for a PET scan and an octreotide scan. The octreotide scan is one where they would be injecting me with radioactive octreotide. I will then go home and let it dwell for 24 hours and do a scan after that time is up. It will look to see if there was any uptake of the octreotide anywhere in my body.
If it did, that would mean there would be an option to use radioactive iodine to treat my cancer. I remembered Dr. J. had mentioning a test like that but he also said that this test would have a 5-10% chance of showing anything. So I wasn’t really expecting it to have any helpful results.
Cancer forces lifestyle changes
A few days before I had my scans I went out for dinner and a conversation with a couple from our church. They had just gone through a cancer journey with their parent and had learned a great deal of information about natural healing. I had looked up a lot of those things myself already but it was good to hear someone else’s research who has gone through something similar.
Since my diagnoses many people have come up to us with treatment options, advice and ideas as to what to ask the doctors or what to try next. Honestly sometimes it is just a little too much to take in. I believe Jeff and I as well as my family have found a few things that we would like to implement into our lives. However, I have learned it needs to be done one at a time. Otherwise these things just become something you do for a little while and then stop. It needs to become a part of your every day routine in order to stick.
Finding Alternative treatments
Another obstacle I encountered while trying to add alternative treatments to my fight, is my stomach. Often when I take the tinctures and pills I decided to try, I feel incredibly sick. My nausea is sometimes already overwhelming before I take anything. So, often I skip taking anything at all to avoid throwing up. Anyways, let me return to the conversation.
When Dr. J. gave us the news my cancer most likely spread, he looked like he didn’t know what he was going to do next. I had been looking into natural therapies more and more at that time. During the research, I had found some information on High dose intravenous Vitamin C therapy. It had shown to be helpful in some cancer patients.
I had no idea where to find anything like that in Edmonton or if there are doctors who are better than others. The couple from church was able to help me out. They referred me to a Naturopath, Dr. D. He was a pharmacist before becoming a Naturopath. The couple had many good articles about treatments and protocols I could look into, their effectiveness and best way to start them.
This included information on high dose Vitamin C treatments, Budwig protocol (eating cottage cheese/kefir mixed with flax seed oil). As well as hyperthermia, which uses a machine to heat the spot in my body where the cancer is to 42 degrees, killing the cancer cells and many more. They also mentioned clinics in Mexico that are pioneers for most of these treatments. They introduced me to doctors who work there and also are very active on the internet. It was a very good talk and just reinforced that the things I was already doing or considering seem to be working well for other patients.
Scans, scans, scans
On December 1, 2016 I made my way to the Cross for the PET scan. I got the radioactive sugar injection plus the contrast drink. After that, I waited an hour for that to take make it through my body. I had my PET and CT scan. Once that was finished, I got my third injection of the day, the octreotide and off I was to go home.
The next day I went back to get the octreotide scan. I was placed into the machine and had to concentrate quite a bit to not get too claustrophobic. One of the plates was only about an inch or so from my face. Thirty minutes later, I was done with the first set of pictures. The radiologist was going to review the scan to see if I needed more pictures taken. Since they got what they needed I was good to go.
Above and Beyond care
Later that day I had an appointment with my ENT (ear nose and throat) for the crazy nosebleeds I used to have. I have already gotten my nose cauterize about 4 or 5 times, but they would get so bad that I would sometimes just stand over the sink for 20 minutes. Anyway, that has been taken care of for a few years now but I just have follow ups with him every so often.
When I got there this time, he checked everything and was happy. However, he wanted to know how my cancer journey was going. I had been to see him a week after I was diagnosed. I told him briefly how I had faired and mentioned that I got tests done over the last two days. After the appointment, I went home not thinking much of it, until I got a phone call from his office an hour later.
He told me he had looked at my PET scan and it looked completely clear. My octreotide scan hadn’t come back yet but he wanted to tell me about the PET so I don’t worry too much. I was relieved on one hand and on the other I had expected that those tests would come back clear. Since I got this information from a doctor I started sharing this good news with people. The most common response was a reflection of how I was feeling as well. “Thank the Lord”!
Nature as an added treatment
The Monday after, December 5, 2016, I went to see the Naturopath for the first time. He was a lovely man, very understanding and knowledgeable. First, he listened to my whole journey and what kind of treatments I had already done through. He then went into more detail on what the clinic offered and which of the treatments he would propose as my treatment plan.
He started off with a recommendation for high dose Vitamin C therapy. Since it seems like I am disease free, or at least slow growing, he suggested to put me on a maintenance treatments. This means he would like me to come in for treatments twice a month. In an acute phase they sometimes do 3 times a week for 6-8 weeks. He would start me off on a low dose of 15g and then go up to 20g, then 30g and finally to 50g which would be the optimal dose that they would like me on. According to studies, the best effect of the vitamin C is when there is a concentration of 42g in the bloodstream.
Dr. D. thinks this will be possible to achieve with the 50g dose. When taking Vitamin C orally you can only take a maximum of 6g before seeing major stomach issues which is why they only do the high doses via intravenous infusions. He also suggested he would make a spread sheet for me with recommended supplements. Like I already mentioned before, my stomach is still not 100% so I haven’t started too many of those supplements.
A light at the end of the tunnel
I have however started with the Vitamin C treatments. I have now gotten a total of 4 doses, which means I am at my target dose. At first I didn’t really notice anything. It was just like getting an IV for hydration. I get there, they poke me and hook me up to a bag of fluids. As the weeks went on, I noticed more and more that I felt like I had more energy. I was able to do most things around the house as well as grocery shopping. We even hosted Jeff’s family for Christmas Eve. I can say I am so incredible thankful for that. It feels like I have a little bit of my normal life back.
All of the treatments done by a naturopath, are unfortunately not covered by the insurance companies. The cost to pay out of pocket quickly adds up. Jeff and I are so thankful, I can’t even put it into words how much. We have received so much love and support from our friends and family in this regard. Two of Jeff’s colleagues started a GoFundMe page for us. A lovely coworker of mine decided to collect money for us at work and our church family has come to our aid numerous times.
It has been absolutely breathtaking to see all of this happen. I can’t even write this without being emotional. I am so thankful to every single person who gave to help us out. May God bless you and repay you for it. The money that was raised, is enough to cover my treatments for quite some time which takes a tremendous worry of both Jeff and my shoulders. Again, I want to say THANK YOU!!
Finally finding the Meddie Family
While I was waiting for the other test results to come back, I did more research online and finally found a group on Facebook. It is dedicated to patients with MTC (medullary thyroid cancer). The group members call themselves the Meddie family. I am so happy to say that I am now also calling myself a Meddie and am a part of the family. The page has been an absolute God sent.
When I was first diagnosed and going through the motions of treatments and such, I had been doing some research. Most of what I found was pretty bleak and grim. Almost every website gave a chance of survival past 10 years, at my stage of cancer, less than 30%. That means that less than 30% of patients who are diagnosed with MTC live longer than 10 years after they a diagnosis. With that information I was convinced that I would not be alive anymore in 10 years.
On the Facebook page, I found Meddies who are living with cancer for over 35 years already. They have had children, grandchildren, and in one case even great-grandchildren. Here I finally found people who were going through the exact same thing I was going through. People who I could ask all my questions my doctors refused to answer, people who understand and people who can give me hope of a life beyond that 10 year mark.
I don’t know how many times I have thanked God for letting me find that group. Of course some posts are more discouraging than others. For example when you read about Meddies passing away or struggling with certain side effects or problems. But others are so encouraging when you read of people celebrating 20/25 or even more cancerversary and they are living and loving life.
MTC guidelines
On this website I was also able to find a lot more information about proper treatments for MTC and guidelines regarding blood work and follow ups. That part made me more anxious and nervous than anything else. As I was reading through all of it and realizing just how undereducated my health care team really is.
That became even clearer when I received a phone call from Dr. J. around the 2nd week of December. Since I already got some of my test results from my ENT, I wasn’t really worried about his call but more curious what he planned to do next. Man was I wrong again.
He told me that my octreotide scan was completely clear, as expected. He also told me though that 2 lymph nodes were visible on the PET scan. Both lymph nodes are on the left side of my neck. One just above my collar bone and one just left of my sternum (breast bone). Dr. J. explained to me that they were both around 7 mm, so pretty small. To give a reference, the biggest one they removed during my surgery was around 1.8 cm.
He called me again a week later to tell me, they just had their thyroid cancer rounds. These are conference where they discuss thyroid cancer patients. This time they discussed my case with 3 thyroid oncologists as well as my surgeon Dr. S. My surgeon decided he would not do surgery at this time, just because the nodes are so small. He wouldn’t even be able to guarantee he would be able to get them. Furthermore, they were going to send me to a medical oncologist to have a discussion about chemo.
Traditional Chemo not an option for MTC
Here is where my Meddie family came in very handy. I heard of the chemo pill before but wasn’t all too familiar with how it works. It turns out that for MTC there is no traditional chemo that works. There are only Thyroid Kinase Inhibitors or TKI’s which are pills taken daily for the rest of your life These pills essentially stop cell growth.
All in all they sound pretty good right? No nasty side effects, no need for constant IVs and the like one imagines when thinking of chemo.
Yea no! That’s not how they work. They do stop the cancer cells from growing, but they also stop every other cell from growing. That includes muscles, hair, potential children the list goes on. If I go on this medication, having biological children is out the window for good.
After I found all of that out, I also found out that Meddies usually go on these pills as a last resort. That means cancer has metastasized everywhere: liver, bones, kidneys in some cases brain. That’s when people go on them to help slow down the growth. MTC grows slowly that some patients who start on these pills, still live 10 or more years after starting them. Some of the people who were sharing about their 20 or 30 year journey are still not on it.
Learning to be my own best Advocate
So, when Dr. J. mentioned he wanted me to discuss going on this drug I knew that no matter how much they pushed I wouldn’t do it. Not at this point at least.
I got some names of doctors in Toronto at Princess Margaret Hospital which is a major cancer Center. According to my new friends it’s also the Center of Excellence in Canada for MTC. The doctors there see about 1-2 MTC patients per week compared to the 1-2 patients a year the doctors here see.
When I first heard about this Center I decided to find a way to go see someone there. I mean here is my most frustrating part when it come to my doctors; I (!) have to tell them or remind them to do my bloodwork. It is me(!) who had to go back to my doctors and be like “so, I had my surgery 6 months ago and still don’t have an endocrinologist. Shouldn’t I have gotten referred there right away?”
It’s just been so frustrating and terrifying to deal with. I mean I am a nurse, I know what tests I need to ask for, what do people do who have absolutely no medical knowledge?
Fighting an undereducated system
During my first phone call with Dr. J. I mentioned I would like to get a consult from doctors in Toronto. When he called me the second time I asked him if he had contacted them for a second opinion. He was taken aback by that and was like “Oh. No I didn’t. What was the name again? I will try to call them”. I gave him the name and got a third phone call from him later that day.
He talked to Dr. B. in Toronto and was told that at this time they recommend the same treatment plan. Meaning no surgery and a repeat PET scan in 3 months. That being said Dr. J. would not send me to Toronto. I was slightly upset by that because of the issues I mentioned. My CEA level (another cancer marker) hasn’t been done since BEFORE surgery. It hasn’t been on anyone’s radar until I went to my family physician and asked for it to be done. She finally gave me a standing order for it. Now, every time I get my thyroid levels checked (which I also had to ask for) I get my CEA checked as well.
It’s not that I don’t want the doctors here to not treat me, I do. I would just very much prefer for them to work WITH the Center of excellence and follow the MTC treatment guidelines. I just want to have someone on my team that knows more about MTC than I do. Someone who will keep everyone on the ball. I feel like God had led me to find the MTC group and let me get all of that information for a reason, he will open a door for me to find a way to get to Toronto.
New doctor, new hope
I am now waiting for January 6, 2017 to go see the medical oncologist. I want to bring up the topic of a referral again and see what he says. If he also doesn’t want to send me I may need to go on the hunt for a doctor who will.
From a fact perspective this is basically how my last few weeks have looked like. My emotional journey has been a bit more intense which I will share in my next blog post.
I thank you for taking the time to read and follow my story. If you pray for me or think of me, thank you. I truly appreciate it.
