Lately I’ve been thinking a lot about time. Not in a super deep philosophical way or anything, just in the way that time goes by so differently for everyone. This year I felt like January flew by in the blink of an eye, while some people I know could definitely relate to all the memes about January being 400 days long. I feel like this whole winter has flown by! Which is strange since usually it’s the complete opposite, but its already May! So much has happened in the last 8 months or so and it’s all happened so quickly. I haven’t written at all in the last while, so I thought it was time for an update.
For starters we moved again, surprise surprise. That’s about 4 moves since Eythan and I have been married now. This time, however, we not only moved houses but moved cities! Eythan had an amazing opportunity come up in Sault Ste. Marie so in November we packed up our quaint Dowling house and piled our belongings into my parents’ basement while Eythan, Lacey and I and a few possessions moved into Eythan’s parents’ in the Sault. Eythan’s Job started in December, so we gave ourselves the month for him to feel settled into his new work before finding a place that would suit us. Because of Lacey, we knew we needed to rent a house with a little yard at least. Eythan’s brother Devyn, found the perfect place for us and we were able to move in in January. Since we weren’t in a big rush, my mother-in-law Cindy helped me spruce up the place with some paint before we moved in. Once the house was already, Eythan, Devyn and I made the trip to Sudbury by U-Haul to get all our stuff. We were so blessed to be able to stay with my in-laws during this time, but we were so excited to finally have our own place again! Our new home is small and old and adorable. It has 5 different kinds of flooring throughout, the tiniest bathroom on the planet and we couldn’t even fit our couch down the stairs (seriously, we literally had to go buy a futon because that’s the only piece of furniture that would come apart to fit…) but we love it and it felt like home almost immediately. I’m so grateful for this since I’ve only ever called Sudbury home, so moving cities was a little daunting. But, we’ve settled in nicely and after a few days of camping out on the couch, so did Lacey. (I think the familiar smells in an unfamiliar place sketched her out a little, nothing a few pork chops couldn’t fix).
I’m so thankful for this move. Eythan absolutely loves his job and I really love being around so much family. In Sudbury, we were near my parents but my sister lives in Windsor and a lot of our friends had moved away. Here in the Sault we have Eythan’s whole family as well as an amazing church community whom we love. Eythan and I speak daily about the abundant blessings God has provided for us through this move. A large part of that is the medical support that I have received since moving. When we came to the Sault I knew I’d need some medical supports put in place like I had when we lived in Dowling. I was able to get on with a new family doctor who has been nothing short of AMAZING. She is a family physician who specializes in palliative care, so she has been the biggest help! I feel so well taken care of and I feel very confident about putting my medical needs in her hands. She’s been a total God send. I also have a nurse who comes to my home every week to make sure I’m doing well and lots of other supports that have made Eythan and I feel very confident that moving was an amazing decision on all fronts.
Many other changes have happened in the last 8 months as well. Medically speaking, my health has continued to decline. In June of 2018 I started to notice that I was having a lot more difficulty breathing. The cancerous tumors in my lungs are large and numerable and keep growing. I started a steroid drug called dexamethasone which is supposed to help with inflammation and therefore help with my breathing. Let me just tell you how much a peach dexamethasone is… (it’s not). Dex is very rude, he prevents me from sleeping well, he gives me acne, he makes my face puffy, he does increase my appetite which is nice, but he causes muscle wasting so my arm and leg muscles are non-existent, he gives me acid reflux, I’m constantly battling oral thrush, he’s even ever so nicely given me some facial hair… but he does help me breath so he gets to stay. And, with the help of fish oil pills these side effects are no longer as intense.
I’m only being dramatic, I will gladly pluck those pesky facial hairs if it means better quality of life. I just find it so funny how many side effects there are with drugs that are supposed to help. It’s like those commercials about new drugs where the first half of the ad is telling you how the medication will help, and the second half is slow motion videos of a person enjoying life while some voice rambles on a mile a minute to let you know how that med will ultimately destroy you.
But anyway, the tumours around my kidney have also continued to grow and so in December I decided that I wanted to start radiation. I’d never done any radiation before, but it was suggested to me about a year and a half ago while I was experiencing a lot of kidney pain. I wasn’t ready for it at the time, I just didn’t feel peaceful about the decision to move forward with it. At this point, its palliative radiation which just means that the end goal isn’t to completely get rid of the tumours but instead just shrink them to alleviate some pain and symptoms. I just felt like it was time. I definitely spent lots of time praying about it and felt very good about moving forward. Most of the time, radiation will shrink tumors, by how much may vary but generally it works. I have a tumour that I really wanted radiated because it is pushing on my rib cage and causing chaos. I ended up having 2 rounds of radiation, 5 sessions each and 3 tumours total getting radiated. I ended my second round in mid-March and am not just waiting to meet with my radiologist at the end of this month to discuss whether we should do more or not.
Although I did not feel good during the recovery period, it was not as bad as I was originally expecting. I experienced a lot of fatigue which is something that I’ve never really experienced before. When you are tired, you can usually push through and still function, but fatigue is different. Your body literally just needs to stop and rest. I also had some nausea that would hit around the same time almost every day but was usually short lived.
At the beginning of April, I was noticing that my energy was super low, breathing was getting worse and I just felt gross overall. I figured my hemoglobin must be low and I was definitely right! I ended up getting another blood transfusion and immediately felt so much better! Now, I’m just going to schedule them every 3 months since they make such a big difference.
I’ve also started relying pretty heavily on oxygen. This is something that I really don’t like but I’m just so thankful that I have it as an option. I have a machine at my house that takes the oxygen from the air and concentrates it so I’m breathing in straight O2. I can go without it but at home I’m almost always wearing it. When I leave the house I put a portable tank in the car just in case. In a few weeks I’ll be getting a smaller portable system which will make running errands a lot less stressful. For now though, I have a puffer if necessary and pills that I can take when I don’t have access to O2 and my lungs feel weak.
I don’t have any amazing news to report or anything but man oh man I am so thankful that I have all the supports that I do. In all forms from family and friends, to medical care, to support from machines and of course the comfort and peace from God. I’ve said before that I am impressed by my body and that’s truer now than ever. The surgery that I had to remove my original tumour was 5 years ago on April 30th. I’m sure if I were still in contact with the Sickkids oncological team I had at 16 when I started this trek, they’d be shocked to find out I’m still here. Only by the grace of God does it make sense to me too.
If I could ask something of the ones reading this blog, I’d ask that you continue to keep me as well as Eythan and my family in your prayers. I’m doing relatively well but of course it is still difficult. I’m continuing to trust in God’s perfect plan for me and I just keep looking forward to what’s ahead.
1 Corinthians 15:58
Therefore, my beloved brothers, be steadfast, immovable, always abounding in the work of the Lord, knowing that in the Lord your labor is not in vain.