I think that is the best way to explain how life has been for Jeff and myself over the last few months. Life has become more of a routine for us and has become normal, or at least what we consider our new normal. The only difference between out life before diagnosis and now, is the fact that, first of all I have a diagnosis, secondly I am not working and thirdly I am feeling much better than before diagnosis.
Struggling with socially uncomfortable side effects
Gut issues
There are a few things I have never shared with you, my readers. Some know of these things because they are very close to me, but I am very self conscious talking about some of these things, but feel like I maybe should. Especially if someone fighting this stupid disease finds my blog, I want to share, to show just what kind of effects one can have. All right, lets start with the really embarrassing one. Diarrhea, or the Big D as other meddies (patients with MTC) call it. Its something that you wouldn’t necessarily connect with thyroid cancer, which I never did until my diagnosis. I had been struggling with diarrhea for about 1.5 years before my diagnosis. At the beginning, when it had been going on for a couple weeks, I asked my doctor about it. We did some tests, such as gluten, but everything came back negative, and the diarrhea went away. So I thought I was good again. We figured it out and everything was great. Jeff and I got our life insurance figured out and I could honestly say by gut issues were resolved. Until about 6 months later until it came back and this time it was here to stay for a long time. It wasn’t always, some days everything was normal, and normal for a long period of time and then it would be back. It was so unpredictable sometimes. At one point I was convinced, that I was lactose intolerant, so I avoided that. But I just LOVE my dairy and it turned out it had nothing to do with it. Towards the end, so right before diagnosis, it was so bad I would have to go to the bathroom up to 10 times a day, and even get up in the middle of the night. It was truly uncomfortable some days. Sometimes I would even avoid social engagements because I had no idea how much gut was gonna be that day. But all that changed, the day of surgery. It was kinda crazy to see how fast it had changed. Later I found out, that a high Calcitonin level can lead to diarrhea, and since mine was in the 2900 range, it was no surprise I would be dealing with this. Ever since then I have had no major issues with it at all. Although whenever I have any gut issues I am always afraid now. What is my numbers are climbing again and thats why I am having a looser stool than usual? But then I just have to remind myself, if it had that major of a spike to cause this, we would have picked up on it way earlier.
Body odour
Another area that I was very self conscious about, started in October of last year, body odour. You can’t even imagine how difficult that one was for me. There was nothing I could do about it. I would shower multiple times a day. Put on deodorant multiple times a day. Put perfume on, and still I could smell myself and others could too. I would often ask my family members to tell me if it got really bad, and again I would withdraw from social engagements sometimes. Nothing was working and it was absolutely not nice. I had changed everything, the clothes I wore, how often I showered, I often I saunad (since I found that it got worse after that), I stopped hugging people. I changed so much that the only thing left to change was my deodorant. I had switched to this one because it has no aluminium in it, which I never knew deodorants even contained. Shows you again how often we look at labels. So I had switched to this one which was supposed to be a more natural one. Once I switched away from it though, poof the smell was gone. Man I wished I would have found this deodorant I have now, without aluminium, earlier. I would have saved myself a lot of embarrassing moments. So I want to apologize. If you have given me a hug or walked past me over the last few months and have gotten assaulted by my body odour, I am sorry. Just know that it wasn’t due to poor hygiene, just that I couldn’t figure out what to do, to make it stop.
Hair loss
The third and final thing I am really struggling with at the moment, is my hair and the fact that it is falling out. Its absolutely insane some days. Before my diagnosis, I used to wash my hair every single day because it got greasy so quickly. After surgery, I wasn’t able to wash it that often, since I didn’t have the strength or ability to lift my arms that high. So I ‘force trained’ my hair to last longer than one day before needing to get washed. Now its good for at least 2 if not 3 days, so thats an improvement. However, over the last couple months I have noticed how much hair I am loosing. Especially when I am washing my hair, I am pulling out so much and throughout that day, I continue to pull hair off my clothes and such. Its gotten so bad that the hair get entangled in my dishtowels while in the laundry and then I keep pulling hair off my counters. I have done some research to figure out what I can do to help stop the hair loss. So I switched my hair products and started taking Vitamins. All in all, I was starting to get so frustrated, that I decided to make a change. Last Thursday, I finally made that change. I went to my hair dresser and chopped off a good 5 inches. It has been a long time since I had my hair this short, but I actually don’t mind it, I quite like it. For now 🙂
Updates from doctors
Most of these updates happened over the last week or 2, so I am happy I waited to make another post. Now I have more info to share with you, and more up to date info. So here goes
Genetics
I had my genetic counselling appointment finally, April 24, 2017, after 10 months of waiting. It was an appointment with a lot of nodding and ‘Yes, I know’s. After we had talked through everything the genetic counselor said ‘I feel like I didn’t really tell you anything new’. Which was true for the most part. The only thing that was new to me, is that with the first step in genetic testing, blood is drawn and examined and not my Tumors. The only thing that will show up in blood however, is if this cancer mutation is hereditary. That would mean that I can pass it onto any children I might have, as well that my parents and sisters would maybe need to get tested since I would probably have gotten it from my parents, which would put Melissa and Ines at risk as well. The counselor again walked through our entire family history and asked about anyone having Thyroid, kidney or other major hormone organ issues is the past. I was able to answer No to all of her questions in that regard. Now, if the blood work comes back positive for me to have a hereditary change in my DNA, I could be the first one in my family to ever show this mutation and have the asssociated syndrome that comes with things like: Medullary Thyroid Cancer, pheochromocytoma (which are basically Tumors on the adrenal glands on the kidney) and many other symptoms. The counselor also mentioned to me how rare that would be that I would be the first to present with this mutations and that chances are much higher that my cancer is just a sporadic interpretation of genes that no one will ever know why it was triggered and why I happened to get this rare cancer. That being said, if the blood test comes back negative (which is what we are hoping and praying for), the genetic technicians will have to go back to the Tumors taken out during surgery and test those. This is very important since some of the medications that have been offered to me often times only work or better work on specific mutations. So say I have mutation A but the drug effects mutation B, then it would be somewhat useless for me to start taking this drug. If it’s not going to work to subdue my cancer, why would I expose myself to the side effects? There is so many decisions that are hanging on these results, when it comes to how to proceed with treatments as well as how to plan our life.
Jeff and I have talked a lot about children and what it would mean for us and having kids, if I indeed do have the hereditary genes. Do we have our own children and just chance it that they don’t get the mutation? Do we not have any children at all? Do we try to adopt, and risk getting denied since I have cancer and could potentially die while the child is still young? Then there is also the questions around chemo drugs and how that would effect having children. When I go on them, it will be impossible to get pregnant or maintain a pregnancy. But then there is also the timeframe. How long can I afford to not start on drugs and not have my disease spread so much that the drugs won’t do anything anymore? So as you can see, lots to pray and think about.
Toronto
Here we also have some news finally!! My family and I went on vacation at the end of April and when we came back, my voicemail was filled with phone calls from Toronto and my doctors office here at home. After waiting for 4 months for them to even look at my file and see if they were going to accept me, they managed to give me an appointment with less than two weeks notice! My first phone call came on April 27 (while we were laying on ten beach) and they had made the appointment for May 9th. However I didn’t get the messages until May 3rd when we returned from our vacation. So as you can imagine when I listened to my voicemails, I was freaking out slightly. How in the world was I going to get a whole trip like that organized in 5 days? On top of that my cousin was here from Germany with her husband and her little girl, and I didn’t want to miss a minute with them. Now I had to go for an appointment across the country. It was after 8pm until I listened to my messages, so there was not much I could do that night anymore, to figure out what I to do. So the next morning I was awake at 7 am and started my phone call list. First call went to Princess Margaret Hospital in Toronto. When I got a hold of the receptionist, she mentioned how they started to get worried about me since they hadn’t heard from me and been trying to reach me for a week. When I asked her about moving the appointment, I was expecting her to say a date a few months from now, but she said May 23 or a May 30th for the next available appointments. Obviously I jumped on that, moved my appointment to May 23rd and felt a weight lift off my shoulders. My cousin is leaving May 18, so I won’t miss anytime with them, and moving it to the 23rd allowed Jeff to come with me to this appointment without having to take off too much time. Annika had offered us to stay at their place whenever I would come to Toronto, so one of my first text that first night went to her, since I knew she was still in Germany to visit her family and I wasn’t sure she was even going to be home by the 9th. With moving it, she is now home and we can make this trip into a little visit with our friends m as well.
God just knew how to make everything work out for the best. We even found amazing flights. For both Jeff and myself we only paid around $750 round trip. I have never seen flights for that amazing of a price when I was looking for them. God provides. It just seems like all the little pieces fell into place perfectly, like only god could do it. While we are in the Toronto area, we will also visit friends and family which is probably something I am looking forward to more than the actual appointment. As I mentioned we are staying with Annika and her family, but we are also going to visit Jeff’s aunt and uncle who I have never met in person. So I am looking forward to that as well. Of course there are so many other friends we are hoping to connect with while we are there, I might even do an Epicure cooking class while there.
Surgery
We have almost reach the one year mark after my first surgery. But before we get there I will be undergoing another surgery on June 7th, 2017. On my PET/CT scan from December, I had a Tumor show up above my right clavicle. Back then it was about 7 mm in size, so the doctors decided at that time it wasn’t big enough to be worrisome yet and also might be difficult to remove based on the small size. With my March PET scan I also got an ultrasound done. On the PET it showed the node to be smaller but on the ultrasound it was bigger around 11 mm. I can also feel the node with my fingers. It’s quite painful around that area as well and some days sleeping on that shoulder or even a bra strap can be too much and the pain is excruciating. So I have been asking Dr. W. my oncologist to try and find an answer for me in regards to having surgery. Last week I met with Dr. M. who was one of my surgeons in the first surgery and he agreed to do surgery as soon as next week. We got the date in June figured out and so that’s what we are doing now.
The reason that it took so long to even see a surgeon, is that up until now every time Dr. W. asked if they would operate every surgeon said no it would be too difficult and have a ton of complications. What I found out later however is that there was some miscommunication as to what I was asking for. They thought I was asking to get all Tumors removed, including the ones on my sternum. In order to accomplish that, they would have to open up my chest and do extensive surgery. That in turn has a lot of risks and possible complications. Now that I finally got across the point that I was only asking for the ones above my clavicle, Dr. M. agreed right away to do that surgery. I was so impressed with him, when I met him. In my surgery I literally saw him for a few seconds as I was wheeling into the OR, so this was the first time I actually got to talk to him. He is so knowledgeable about my cancer. He is probably the most knowledgeable doctor I have met so far. Dr. W. is an amazing doctor, don’t get me wrong, he will take time out of his day to call me and spend half an hour on the phone with me to figure out what the next steps for me should be. But how much can you know about a cancer if you only have a handful of patients with that cancer, if that? So it’s been refreshing to talk to Dr. M. since he works a lot with patients with Neuroendocrine Tumors, which is where my cancer falls into.
Well, there you have it. A few updates and a few confessions. More updates on how life has been besides doctors appointments and cancer talk coming up soon. 🙂
Thank you for all the prayers. If you could keep us in your prayers as we go to Toronto and as well for my surgery, that would be greatly appreciated. May God bless you all.
