Stuck

I feel STUCK!

I think that is the best way to describe my current state in one word… stuck.

In every aspect of my life right now I feel in one way or another stuck. Let me explain what I mean by that. I want to be very open and honest, not all of it will be pretty but I need to get it off my chest.

Medically 

Well, this one is an easy one to understand I believe. I feel stuck and left out to dry by my medical team at the moment. I am frustrated and every door I knock on gets slammed back in my face. As previously mentioned I want to go to Toronto to Princess Margaret Hospital. I want to see somehow who is more knowledgeable about this rare disease than I am.

Please don’t get me wrong. My medical team is very capable when it comes to dealing with cancer, just not mine.

Over the last few months I have learned so incredibly much from my Facebook Meddie family (other patients with the same cancer or caregivers to these patients). I have found out that there is such a thing as guidelines when it comes to treating medullary thyroid cancer. Something I had never heard about before. While reading through them I realized just how much emphasis was laid on the DNA of the cancer.

Medullary thyroid cancer always has a genetic component to it, however not all of them are hereditary. So that means I wouldn’t pass it on in case I ever have children. After talking to many people on the Facebook page and also having a phone conversation with one of the ladies on there, I am feeling even more frustrated then before. I should have had a DNA test done, 7 months ago, when I was first diagnosed. Treatment often depends based on which mutation a patient has. Let me explain how that relates to me in particular.

New Oncologist, new hope for knowledge

I met with a medical oncologist (specialist for chemotherapy), Dr. W.

When Jeff and I met him for the first time he left the room for a second. We looked at each other and almost at the same time said ‘I like him a lot’. That’s still true. He has an amazing bedside manner and is so much more understanding than others have been. He even showed us the pictures of my PET scan.

My newest tumor, is actually much lower than I thought. It is right on my sternum (breastbone). He explained that he would like to retest it, since it could be that some of the spots are just reacting to something else entirely. He would like to do another scan with Gallium (hard to get in Canada). I am on a waiting list now.

What I liked the most about him though was, everything I was doing, he wasn’t rebuking. He listened to all my concerns and frustrations and tried to find a solution for them. I even got an appointment with an endocrinologist. He referred me to the physio Department at the Cross to get checked out. They will see if they can do something my other physio may not know about. He even said he was going to look into sending me to Toronto.

Well that conversation was 3 weeks ago. I still haven’t heard back from him. I got a letter in the mail with a new PET scan appointment for March and I got the referrals to endo and physio but that’s it. No news about Toronto and when I called his office, they checked in my chart and there was no mention of me wanting to go even. No clue if he has contacted anyone, if it’s still happening or what.

The world of TKI’s

Anyways, back to the reason I actually went to see him, chemotherapy. There is a drug which people with medullary thyroid cancer have been put on recently. It has shown some hope in progression free survival.

What that means is, that they are surviving without the cancer growing and progressing further. This drug is a Thyroid Kinase inhibitor. It basically stops ALL cell growth in the body. That includes hair, muscles, in some cases skin and what turns me off them the most at this point growing embryos. If I end up on this drug I would be taking it for the rest of my life (it’s a pill taken at home everyday).

That would mean major side effects and never being able to have my own children. Another big red flag I learned about just this week actually, is that since this drug is so new (4-5 years), there is just now new evidence coming out. This ‘progression free survival’ actually only happened in patients with one particular mutation of the cancer. So, if I start it without knowing my DNA result I could be stuck with all the side effects and the drug being absolutely useless in my body.

Stepping up my own Advocacy

I have started contacting doctors myself now. Writing emails and calling the doctors in Toronto to see if they would be able to give me second opinion. I even heard back from the office the next day. Only to be told that the doctor that is seeing most of the MTC patients won’t take me on. They would recommend me seeing another doctor at Princess Margaret if anyone at all.

So yea, I am stuck.

I am stuck fighting every which way I can think of, even going to the news. I am in contact with a reporter who wants to make a story about the under treatment and in some cases mistreatment, of MTC patients here in Canada versus the US. But I am still stuck. It seems like no one knows what to do, or even cares enough to find help for me somewhere. My mom ask me today if because my cancer is so weird why it wouldn’t be more fascinating to doctors to work on it. My only answer is the same as the answer to the question I have. Why isn’t there more research in this area, ‘it’s just not worth it. There aren’t enough of us that are effected by this type of cancer’.

So I keep being stuck and trying to find new ways to get out of this muck, to find a door or window that will open for me.

Life Wise 

Well this is another area that is easy for me to explain how I feel stuck. How do you plan your life when you don’t know what the next phone call might bring? How do you go on with life when there is still things to figure out? What do you do, when no one is helping you to figure them out?

I have not worked since June 11, 2016. That is over 7 months now. So what do I do all day? Well, I try to keep busy. Some days consist of too many appointments to count. Other days I just spend on the couch watching TV and knitting. Again, other days I spend hours at my moms house. Or running as many errands as I can think of, just to get out of the house.

Don’t get me wrong there is a certain niceness to the fact that I can make plans anytime I want to. That I don’t need to consult my work calendar. But still, I would way rather do that than having my brain feel stuck. Sometimes I just wish I could go to work even for a day. Just to have that feeling that I may have helped save someone’s life today. To be less focused on what’s going to happen next for me.

I plan on going back to work as soon as my shoulder will let me. I am working on getting that better with Physio. Who can guarantee though, that as soon as it is good again, I don’t have to have another surgery for the lump on my clavicle? Or maybe there will be something else that needs treatment for that matter.

Grieving the life I thought I would have

Then there is the feeling of being stuck in life.

This one is a bit harder to talk about. When I thought of my life while growing up, I saw myself married with a nice home and at least one baby by now. Maybe even one on the way, or talking about it, trying to have another one. Well, all of that is completely out of the question right now.

I can’t even think about starting a family until I get a ‘you are stable’ from any of my doctors. I didn’t really want to share this, but like I said before I want to also be open and honest and share my struggles. That’s exactly what it is right now, a struggle. I mean, my little cousins are having babies, my friends are having babies and I can’t even think about it.

I actually thought I might be pregnant not that long ago. With my thyroid meds my hormones are often completely out of whack so there was suspicion. Even though I knew the test would be negative I still had that little bit of hope that maybe somehow God was giving me this incredible gift. A great gift in the midst of this trialing time. That He thought it fitting for us to have a child now.

I realize that it would probably not be the best for my health or my stress level right now, but it still is a dream to be a mom one day. Again I just feel stuck in this limbo where nothing is changing a whole lot. This unknown where I don’t know what my future will look like. Which brings me to my next point…

Spiritually 

Maybe one that’s even harder to talk about, because it’s so hard to admit it to oneself.

My relationship with God is still one of the most important, actually THE most important, thing in my life. Again though, I am struggling. I am stuck on the same problems over and over again; trusting Him completely.

This is probably were all my other feelings of being stuck stem from, because if I could trust completely I would just let go and let God. I want to, so badly and then catch myself jumping on the anxiety train again . Worry and worry and worry to no avail. I get more frustrated and get the feeling of being stuck even more.

Before my diagnosis, my mom asked me a few times if I wanted to join Ladies bible study in our church. I always said no, blaming it on shift work and how hard it would be to always have Tuesday mornings off. However now that I am not working at all, I decided to join. I have to say it has been such a blessing to me. In the fall session we talked about Sarah, Abrahams wife. We talked about how she trusted God and just left her family and friends and blindly followed with Abraham to where God was leading them. She has become a great example to me, yet a hard one to live up to.

“The LORD is with me”

God always finds a way to remind me that he is in charge. He will do what’s best for me. For example, on my MTC Facebook page, one of the patients is in his last stretch. He just went home with hospice care and doesn’t have a very long life expectancy at all. One of the ladies made a collage of pictures of him and his family. She included a bible verse that has now stuck with me.

“The LORD is with me like a mighty warrior” Jeremiah 20:11

This reminder came to me in a way that I wasn’t expecting it at all. He will be with me and He will be fighting for and with me.

I also often feel guilty about the way that I am not trusting, maybe often not spending enough time with God. For me, doing my daily devotions is hard. I get distracted so easily, my thoughts are often running a million miles an hour. I have a hard time focusing on Gods word. Sometimes I will read through a passage in the bible and a few verses later notice that my thoughts were somewhere completely different. I have no idea what I just read.

Then comes the guilt. God has done so much in my life, especially over these last 7 months. How can I not give him my fullest attention? If you’re looking for something specific pray about for me, maybe this can be my prayer request.

Relationships

Where do I begin with this one? And how do I say it without offending anyone? That’s definitely not my intention when I am saying this. If I do offend you please contact me so we can talk about it. I would like to clear up any misunderstanding or misspoken words.

Why do I feel stuck in relationships? Well, because more often than not the conversations are all the same. Please don’t get me wrong, I do not mind talking about my cancer, not one bit. I also gladly answer any questions anyone may have. Please don’t stop asking them.

I just want to be me again

Where I do feel stuck though, is that it’s so hard to be just me. It’s hard to be be just Christine. Not Christine the cancer patient, but Christine. The person that I was before the diagnosis. I think this became very clear to me around Christmas time. I was at a girls Christmas party at a friends house. Sure, we talked about my cancer, but it was just at the beginning of the night. After that, we settled in like every other time.

Towards the end of the evening I had this amazing realization that this was one of the first times, everything felt just like it did before. I was just another girl in the group, I could just be me. When I talked to Jeff about it later, I was actually in tears. I didn’t realize just how much I missed that feeling of being ‘normal’. After that it became so much more evident the times when evenings weren’t quite like that.

I mentioned in my previous post how I now feel like I have way more energy and I think it is helping to get me out of the ‘oh she is sick’  treatment. Most times that was necessary, because I really wasn’t feeling great. I have now been able to host some dinner parties and hang outs with friends over the last month. More and more, I feel myself again.

I am not imminently dying

Another area that is difficult, is when people treat me like I am dying, or the sickest person they know. Jeff’s grandmother is an amazing woman. Her and Jeff’s grandfather pray and support us both so much. However, Jeff did talk to her at one point that she needs to start treating me differently. Every time I would speak to her regardless what it was, the conversation would always come back to cancer. Without fail she would also always cry. Sometimes even just seeing me she would start crying.

Please don’t get me wrong. I love her dearly and I appreciate the concern and love she is pouring out to me, but maybe the best way to explain how I feel is, very uncomfortable. Almost like every time she saw me she was reminded that I am dying, if that makes any sense.

It is not just the crying though I struggle with. I would often voice my frustrations to Jeff when people would ask me how I was. I would say ‘I am doing good’ and they look at me with that look and say ‘and how are you really?’ Well that is just frustrating for me. When I say I am good, I truly mean it. When I am not good I will tell you that, I promise. I don’t want to have to convince anyone that I am actually doing good.

I promise I am not going anywhere any time soon, unless something terrible should happen. So, if I could ask this… just be my friend. Please don’t feel like you can’t ask me about my cancer. I appreciate when people do, but I am not actively dying. I am living life to the best of my ability with Gods grace by my side at all times.