I am again overdue for a quick update on how my treatment planning looks. Especially since our trip to Ontario. We are so glad that we went to Toronto. I am so glad I persisted, that I needed to go and see Dr. K. at Princess Margaret Hospital. I am relieved that I didn’t just take the first answer I got from the doctors. I am thankful to God that he led me to the Medullary Thyroid Cancer support group on Facebook when he did. I am grateful for the information I received on that page and the many, many things I have learned thanks to the people who have walked this path of Medullary Thyroid Cancer before me.
Edmonton Suggestions
When I met Dr. S. the very first time, he mentioned to me that MTC is maybe seen in Edmonton a couple times a year, between all of the endocrine surgeons within Edmonton. If you compare that to the approximately 1950 women diagnosed with Breast cancer in 2012 in Alberta. I don’t fault the doctors here that they don’t know very much about MTC. Why would you be an expert in a cancer that you see that rarely? Anyways, since my surgery wasn’t able to remove all of the tumours, the next possible treatment option was radiation. After that was done, the only other treatment left for possible reoccurrence of disease in my neck, would be mediation. Or more specific a medication type that is called Thyrosine-kinase inhibitor (TKI). That is a big fancy name for a type of medication that falls into the chemotherapy category. Since my diagnosis, many people have asked me about my stance on chemotherapy and if I would be willing to start something like that. There is a lot of controversy out there when it comes to chemo and the effects it has on the body. I guess the overall answer for myself is, I don’t get the choice. Conventional chemotherapy is not an option for me. MTC does not have a single chemotherapy drug that it reacts to, at least as far as I know right now and is available for meddies. TKIs are a pill that I would have to take every single day for the rest of my life. Its not a cure. Does don’t exist for MTC, its incurable. However, many meddies start TKIs when the cancer has spread throughout the body and is starting to have many negative effects because of where the cancer is. The medication is supposed to reduce the speed at which the cancer cells grow. So basically its meant to slow down the growth and buy me a few more years. There have been cases where patients have had progression free disease for years and years. That is the hope for me eventually. One day the day will come when my cancer has spread so much that surgery is not an option anymore, thats when TKIs will come into the picture, if we haven’t had a big break in science by then and have come up with something better. The so called magic behind this whole thing is to find the right time to start these meds. Start them too early, and I will have many side effects, the cancer will probably be kept at bay for a time, but TKIs always hit a point where they are no longer working. Once you hit that point, the cancer usually becomes more aggressive, especially when the medications are stopped because they are no longer useful. The longer we are able to not start the medication, the longer my life could potentially be extended. Finding the right point in time, where the cancer is growing fast enough to have an effect on my daily living, but isn’t advanced enough yet that the medications wouldn’t do anything anymore, that is the real trick.
I know that might all be a little complicated, but now you might understand a little more, why it is so important for me to find a doctor who somewhat specializes in MTC and can find this sweet spot. Often times I have felt that the doctors here in Edmonton just don’t know enough about MTC or the specific TKIs and therefore don’t have the understanding of when I need to start these meds. One doctor basically told me the other day that if I don’t start on meds in the next year or two, he doesn’t see me surviving longer than 10 maybe 15 years. Well, I can tell you, thats a scary thing to hear from a doctor. Just another reason why I am so grateful we went to Princess Margaret. The whole trip was just such a tremendous encouragement in more ways than just one. So much so, that my family physician said to me today when I saw him to check in about Toronto: “You look happier”, so let me take you on a little recap.
Toronto Trip
Before the appointment
Jeff and I flew out on a Friday night, well Saturday morning (1am) :). After a long and goodness gracious bumpiest flight of our lives, we landed in Hamilton and went for some breakfast. In the afternoon, we went to meet up with Jeff’s uncle and his family. I had never met them before and Jeff hadn’t seen them in over 15 years. We had a very lovely afternoon catching up and getting know each other, playing games and laughing.
Sunday was probably my favourite day.
We went to church in the morning. Annika was leading worship that morning and she asked me if I would be willing to give a quick testimony. Of course I said yes. This church had been praying for me for a full year already. Some of them only knowing me through hear say. So it was nice to be able to go up in front of the church, put a face to the name and most importantly say thank you to the whole congregation for all the prayers they have already prayed for me. When Pastor Harry went up to bring his sermon. We talked with his son about the fact that Pastor Harry didn’t know that Jeff and I would be there that Sunday when he was preparing his sermon. It was on divine healing, so somewhat perfect. After the sermon, Pastor Harry invited anyone in the audience who would like to be anointed to come up to the front and he and some other people would pray over the person.
For those of you who don’t know what it means to be anointed, a quick explanation. The bible verse that goes along with anointment is:
Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord.
James 5:14
The way it is done, is that the person who is sick and who would like to be anointed would sit on a chair with the people praying standing around that person. The pastor then anoints the person. After that everyone standing around the person takes turns praying for the person and asking God for divine healing.
Back to that Sunday, since I had gotten anointed the day that I got my diagnosis a year ago, I wasn’t sure if it was possible or appropriate for me to get anointed again. Jeff’s uncle had mentioned the day before that he was anointed three times for an ailment. However I wasn’t sure what the right thing to do was, so I didn’t go up. Right before the last verse of the conclusion song, an older gentleman came up to the front and basically gave me my answer. He said that he didn’t know that I would be in the service today and that even before the sermon had started he felt God talking to him and urging him to call me up to the front to have people pray over me. He continued to say that he didn’t know why God would choose him to relay that message, but that he had tried to ignore the urging. Once Pastor Harry started to speak and then make his offer to have people come to the front the urging just became stronger and stronger, so he came up. He said “I just feel like we should call Christine to the front here and these people should come up and help me pray over her”. He said this just a couple seconds after I had turned to Jeff and asked him if it would be appropriate for me to go up and get anointed again. So up I went and had 4 people pray over me. It was such a blessing. I felt the Holy Spirit right there with me. I left the service feeling rejuvenated and incredibly blessed.
The rest of our afternoon was spent making some delicious Burger with the help of some of my Epicure spices and gadgets 🙂 with our friends. Its unfortunate that we live so far from each other, it is always so nice to catch up with everyone. We had a great evening with good food, laughter and games. All in all, like I said one of my favourite days while we were there.
Meeting Dr. K
Tuesday, May 23, was the day then. Annika, Jeff and I made out way to Toronto and off o meet Dr. K. I had found her name through my Facebook support group since some of the other meddies in Canada had gone and seen her. She sees patients like me a few times a month if not every week. She mentioned that she actually saw another meddie the same day as me, obviously she never told me who he was but said that there is great promise is using vandetenib (the TKI drug), since this person had been on it for 10 years already and is doing well. Appointments like this can take some considerable amount of time, so mine took almost an hour and a half. First one of Dr. K’s residence or fellows came in to talk to me. It was very interesting to hear his take on MTC, since he is from Australia and some of the tests that we are desperately trying to get here, like the Gallium scan, they have there as a regularly offered scan. We went through my entire history again and everything that has happened since my diagnosis. He was very helpful already as he was able to answer some of the questions other doctors weren’t able to. Shortly after he was finished with his history taking and quick exam, Dr. K. came into the room and basically confirmed everything that I thought would be the best course of treatment for me. She suggested that I would need at least another year of scans and routine blood work, before we would be able to understand how aggressive my cancer really is. She says until we have a much better picture, there is absolutely no reason to start medications or even consider it. She gave me a name for a doctor in Calgary that also sees way more meddies than other doctors, for example here in Edmonton. Dr. K. said that when the two of them meet at conferences and such and compare notes as to how they treat their patients, it is very similar. She was open to seeing me again and taking me on as a full time patient, but then I would have to fly to Toronto every 3 months. Not that that would be a bad thing, I mean I would get to visit my best friend every 3 months which would be amazing, but the amount of money it would cost to do that just isn’t feasible. Especially when there is an option so much closer to home. When its 3 hours driving, instead of 4 hours flying. When I mentioned to her the life expectancy I was given by the other doctor, her face just said it all. She was very surprised and gave the impression that I never should have been given a number like that. As we were talking more and more, she made sure to point out how different MTC is from any other cancer. No person with MTC is the same as another. No disease process is ever the same, or cancer growth the same rate. Nothing is every cookie cutter with MTC. Hence why there is no way anyone can or should be giving me a life expectancy, especially not at this stage when we don’t really know yet how my cancer will behave.
All in all, the appointment was a great success in my eyes. I am way more confident that what I have learned in my support group and what I have been trying to achieve by standing up fro myself, are correct and I just need to get behind the wheel of my own medical journey bus, as so many meddies call it. I have heard that expression so many times on the support page but it has never been more meaningful to me than now. If I hadn’t insisted on going to Toronto and finding out what an expert has to say in the matter, I would probably have started on TKIs by now. That would have also meant giving up on the whole ‘having children’ question. Since TKIs slow cell growth, growing a baby is just not an option anymore at that point. Main point, I am grateful for the opportunity to have gone to Toronto and spoken to Dr. K. I am grateful that God has made this possible and also that there is a doctor that can help me so close to home.
Thank you for everyone who has been praying for this trip and the information I needed to get. I would also like to thank everyone who has given money to help off set some of the costs of my treatments, as that money was very helpful in getting us to Toronto. May God bless you richly for it.
