A lot as happened since my last post. I am getting more and more “unstuck”. Yet, nothing really has happened until just this last week. I should’ve learned by now that life throws you curve balls when you least expect them. It is still almost like a shock every time we get one of those curveballs though. Be it a little one, be it a big one, or even a huge one like the one I want to talk to you about today.
Maybe let’s start with the smaller ones first…
Physiotherapy
The day I posted my last blog post, I had an appointment with the physiotherapist at the Cross Cancer Institute. This was the first time going there since I was referred. So, I didn’t really know what to expect. The therapist called me and asked me about my history. She asked me what I did with physiotherapist in the community and how I was feeling now.
I explained to her, that I was lifting weights up to 10 pounds overhead and doing chest presses, also with weights. She then did a series of assessments on me, starting with range of motion and seeing how strong/weak I am. All my life I’ve heard that I’m super flexible, to some degree even hyper flexible. I never thought anything of it, I just thought it was something good to have and not be too stiff. However, now I learned that being hyper flexible also has its negatives, especially now in my recovery time.
What was the point
What I mean by that, because I am flexible I don’t experience the restrictions of my injury as much as I should be. I notice it in regards to pain but not so much in regards to how much I can move. Every time I do move, it hurts a lot. However, so far I’ve been able to do the motions. The therapist told me though, that doing the motions and lifting that much, has actually been hindering my recovery.
Listening to all of what she had to say, I felt somewhat defeated.
Now here I was working with a therapist twice a week, and potentially I was hurting myself more than I was helping myself. She showed me other exercises I should be doing instead. These will be more beneficial for me and will actually help me in recovery. She walked me through the operative report a little bit more than any other healthcare professional had done before.
Finally an explanation
She told me, that the doctors worked on the spinal accessory muscle nerve which is a nerve in the neck that controls the trapezius muscle. That is the muscle that is currently almost nonexistent in my body. All the muscles in my shoulder should be supported by the trapezius. However, because it is so weak, it’s not able to support my shoulder.
The muscles that are working, now have to work overtime. This makes them more susceptible to injury, feeling sore and just overall feeling more stiff. Especially in the mornings. So, when I lift 10 pounds or more I wasn’t doing it with the trapezius which usually plays a big role in that movement. Instead, I was doing it with all of the other ones that are usually not strong enough to do that.
As I worked with the therapist, she drop the weight I am allowed to lift to 1 to 2 pounds and not more. I have to slowly work myself back up to more weight. She gave me a range of exercises that I am supposed to do daily. I am not supposed to increase the weight until I’m completely confident the muscles in my back are getting stronger.
Long road ahead
What does that look like you may ask? Well, when I do the exercises, anyone watching me, can see how my muscles are quivering. I had a follow up with her this week and she was pleased to see that there is some evidence of the trapezius muscle coming back to function. It is a very, very slow recovery and she estimates my recovery time to take at least until July. Even that is considered pretty good, since she often sees injuries like that, taking up to 18 months to begin to heal.
That being said, that could be longer or shorter depending on what other treatments I need to still get. She also said that because I lost so much weight, I am not able to build up those muscles as fast as other patients would be. Not only am I now working on building muscles, but I also need to work on gaining some weight back so that my overall condition can increase.
I left the office the first day feeling like I just spent three months working on something that wasn’t helping me. I now know how to start from scratch. The last few weeks as I was doing the exercises I’ve been starting to feel like I can lift a little bit more. At least without feeling the exhaustion in my shoulder right away. I feel like I am more conscious about my injury as well. Also more aware how it is affecting me, because I am paying more attention to it.
Small changes every day
I have learned to favor my right arm a little bit more than I used to. I try to do more things with my left than my right. So far, it seems to have a small benefit. This is definitely a practice in patience for me. All I want is for that shoulder to just be completely back to normal, or get to what is going to be my new normal.
I also mentioned to the physiotherapist my issues with lymphatic drainage from my face. I have noticed my face looking fuller these days. It’s not because I have gained weight, which I almost wish it would be. Instead it is swelling from built up lymphatic drainage.
She offered to tape my face in a way that would allow my regular movements to help with that drainage. I have only ever done it once, but it helped quite a bit. Overall I am struggling with that a little less over the last few weeks. My face is way less puffy and my double chin is gone most days. Its great to have options that I can easily do to help with the drainage.
Moving on from being STUCK
God works in mysterious ways, that is for sure. He has helped me in so many ways, to get out of this feeling. Be it in bringing me opportunities to be more active (getting out of the house). The right sermons and encouragements at the right time, or giving answers for my medical journey, also helped so much.
There are still some aspects that I am waiting on, to find out the next things to happen. I no longer have the overwhelming feeling of being stuck in this life that I didn’t choose for myself, however.
The uncomfortable conversations
I want to be completely honest with all of you and I hope this won’t be too harsh to hear for some of you. Over the last month or so, I have had a lot of thoughts and discussions that I never thought I would have. I mentioned in previous posts already how Jeff and I often have conversation that a couple of 26 year old ‘kids’ won’t even think of having.
Such as that I would want him to move on without me, when the day comes that this cancer will take me. These conversation often times increase in frequency and intensity, as test results draw nearer. That wasn’t any different this time. Anytime I know I will find out more results, I get terrified.
I know God is with me and I should really trust him, but it is so difficult not to jump onto the anxiety train. The week before tests and subsequent results, I am always a mess. Some of the thoughts that run through my head are obviously worst case scenario.
What if the cancer has spread? Has grown exponentially and it is not treatable anymore? What if this time they give me a time frame as to how long I have to live still? If it isn’t that much longer anymore, wouldn’t be easier for my family, if it would just go way faster? That way I don’t have to put them through all of this? I have thought a lot about dying, what it would look like, what it would feel like, what it would be like for my family?
I am not ready
Talking to Jeff the day before I got my test results, I just broke down. I am just not ready to leave him yet. I am not ready to imagine him having to live life alone. It may not be the easiest thing to do, I understand that, but I do want him to move on. I am not ready for my parents to have to bury their child. I can only imagine what that would do to them.
So when I stand before the day of results, its always stressful. Jeff is amazing in those moments. He will always pick out the best bible studies to calm both of us down and help us to trust God more and put it in his hands. On Thursday night, he picked
Psalm 27
1 The Lord is my light and my salvation—
whom shall I fear?
The Lord is the stronghold of my life—
of whom shall I be afraid?
5 For in the day of trouble
he will keep me safe in his dwelling;
he will hide me in the shelter of his sacred tent
and set me high upon a rock.
7 Hear my voice when I call, Lord;
be merciful to me and answer me.
8 My heart says of you, “Seek his face!”
Your face, Lord, I will seek.
9 Do not hide your face from me,
do not turn your servant away in anger;
you have been my helper.
Do not reject me or forsake me,
God my Saviour.
13 I remain confident of this:
I will see the goodness of the Lord
in the land of the living.
14 Wait for the Lord;
be strong and take heart
and wait for the Lord.
Comfort in God
I thought that was the perfect passage for me. After reading and talking about it a little, I felt so much calmer and actually slept through the whole night without waking up once.
My favorite part is “Whom shall I fear?” What can cancer do to me that God can’t bring me through? In which ever way he decides to walk me through. As I am writing this, I am following the funeral of my moms cousins daughter. She passed away this past week at the age of 31 after a one year long battle with cancer. The family chose to incorporate the song I posted below into the service.
A dear friend of ours had sent me this song fairly early on in our journey and I have since then heard this song so many times. Today it became more important to me again, as it describes perfectly what I want to do, I want to Trust In God! My favorite part of the lyrics is:
You are my strength and comfort
You’re my steady hand
You are my firm foundation
The rock on which I stand
Your ways are always higher
You plans are always good
There’s not a place where I’ll go
You’ve not already stood
Feeling Spoken to
It seems that God wants me to really focus on that part. Again, the day that I posted my last blog post, Jeff and I had the opportunity to join our church youth at a youth retreat. On the first night we all ‘picked’ a verse for the weekend by throwing darts at balloons, that had the verse inside. I missed 5 (!) times, so I truly feel like I got the verse I needed to get which was:
“As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” Isaiah 55:9
I am reminded over and over again, that he is all knowing and he will bring me through the tough times. The times when it seems like there is no escaping from the darkness that seems to want to surround me. He will be the rock I stand and His plans are always good.
‘There is not a place where I’ll go, [He has] not already stood.’
I could go on and on about just this sentence and how that thought has played a huge role throughout my entire life, not just now while I am fighting cancer. It was also there when I was terrified of having to move to a new country (Canada) and leave everything I knew behind. He walked ahead of me and was already there. He blessed me so richly here in Canada and I am so grateful that we made the move. So, I know that whatever He has planned, in the end it will be more amazing than I can imagine.
Ever heard of Epicure?
Another way that God has helped me to get out of being stuck, is to open up a door for a new business adventure. Ever heard of Epicure? Well, that is the company I have joined forces with.
I went to a cooking class in January and loved the products. Jeff was talking for a while, that we should think about doing a meal plan and eat healthier. Epicure presented me with a plan, but in order to make all the recipes, I also need the right products. I decided I would host a cooking class and try getting it, without having to spend too much.
While getting ready and starting to use the products I ordered at the first cooking class, Jeff kept mentioning to me, that this might be a good company for me to join. When the day of the class came, I signed up. So far, I have not regretted that decision one bit. I love the products and I love that I know what I am putting into my body.
When I was first diagnosed, that was the big thing many people recommended to change, my diet. I had done that to some extent, but it is so difficult to keep going with something like that. Especially when you don’t really like what things taste like. So this has definitely been a blessing.
For the business side of it, I have done cooking classes and have more booked for the upcoming weeks. I get to go out of the house and meet new people, teach them something new about healthy eating. The people I have made are just the loveliest people. I feel like my day to day living, has become a bit more purposeful. God provides in mysterious ways.
The Good News
Well, let’s get to the good news. This is honestly the first time in 9 months, that I went to get results and didn’t get completely devastating news again. Every time I have gone so far, I was expected something (like my blood work to have improved) and got the opposite. This time was different. I was expecting the worst, like my cancer to have spread. I was almost expecting to have found a new primary cancer.
A few weeks ago I went for my yearly physical. While doing my breast exam, my doctor thought he felt something that he didn’t like very much. So, he send me to get an ultrasound done. I asked to add a thyroid/neck ultrasound on to it just to have a better understanding what is going on. With my cancer an ultrasound is often better and more accurate than a CT scan or PET scan.
As you can maybe imagine, I was super nervous. When I woke up the morning of my ultrasound, I felt absolutely exhausted. It was a Tuesday, so the plan for me was to go to Ladies Bible Study that morning before heading to the ultrasound.
I just couldn’t get myself out of bed. So I skipped LBS and made my way to the ultrasound just after noon.
Tests after tests after tests
The technician was such a caring woman around my age. She kept saying “you are so young, you are so young”. We talked a little about this and that, I pointed out the spots that I wanted her to take a closer look at. When we got to the end of the scan, she went to go show the pictures to the doctor. He came back and wanted to see some of it in person and not on the picture.
My anxiety was growing, but at the same time, as she was doing the ultrasound, he kept saying “oh, that’s normal structure”. When I left there, I felt a little better, at least about my left breast.
Thursday morning, I made my way to the Cross Cancer Institute at the crack of dawn, to get blood work done. I was also to have another PET and CT and meet with the physiotherapist. Between all the blood work, Vitamin C treatments and scans I often feel like a pincushion. Getting poked has started to become more painful. Anyways, after getting my radioactive sugar injection and waiting my hour, the test was done and I was off to the next thing.
Appointments after appointments after appointments
The next day, so Friday, I had an appointment with an Endocrinologist. I had already seen one at the Cross, but this was set up for me from my family physician. I figured I would go and see what she had to say. She was a very nice lady and ensured me that the doctor I was seeing was going take good care of me.
What she did next though, was what really was good for me. She noticed that I had had the scans over the last few days, so she went over them with me. I went from there to go see my family physician and basically already knew everything he was going to tell me.
So here are the result. Ready? I can’t wait to share them :). My last scan was December 1, 2016. The day of my new scan was exactly 3 months later. In this time thins have changed… for the better.
Here is the good news
I had 2 major spots that they were worried about on my December scan. Both of those spots have shrunken slightly. This is unheard of for my cancer. It doesn’t shrink. It might stop growing, but it doesn’t shrink. Mind you it is a very tiny shrinkage, but shrinkage none the less.
Overall, my PET scan looks to have less activity when compared to the last one. Praise the Lord! That is the only way I can explain this happening. God blessing the things I’ve been doing such as Vitamin C and using it to help me get better. The node on my right clavicle shows to take up less of the radioactive sugar, which means that there are less cancer cells to take it up.
However, that one has definitely grown. It is palpable and somewhat painful. Sometimes it’s even visible to the naked eye, depending on how I hold my neck. That means that even though I know it’s grown, it may have not grown in cancer cells. Comparing to the ultrasound, the node is bigger on that (1.1 cm vs. 0.7 cm on PET). I will ask the doctors for surgery on that one though. Because it’s not so superficial and it’s painful, I feel like it will only aid my recovery in the long run.
My breast ultrasound also was cleared. There are some cysts, but nothing we need to be worried about at this time. Blood work has also improved. I am still waiting on Calcitonin levels, but I got my CEA levels back. It’s the lowest it has ever been at 10.9. It’s dropped from 16.4, I believe. That is a huge changed and such a positive sign. I am so excited and grateful for this news. God has performed another miracle on me.
Breath of release
Breath of releaseThe day after we got this news Jeff and I both felt somewhat weird. Throughout the day it was really hard to pinpoint why that is but I think we came up with a conclusion. We have been so tightly wound for the last 9 months, always preparing and expecting the worst, that now that we got good news, we relaxed. That relaxing just turned into completely emotional exhaustion. It took us a couple days, but I think we’ve gotten over it now.
Lastly, as to news about being able to go to Toronto, to see specialists at Princess Margaret Hospital, my family physician has put in the referral. It was denied the first time. They were saying that I am getting treatment here and they don’t understand why I want to go there. So we sent more paperwork and referrals, asking for a second opinion. This time we haven’t heard back yet, which I am hoping means that they are working on setting up an appointment for me.
Again I want to thank each and every one of you, for supporting us through this journey and being with us every step of the way. The prayers and words of encouragement definitely mean so much to us. We wouldn’t be able to function without them. Thank you and may the Lord bless you for it.
