TEN- My goal since surgery has been making it to the 3 month mark. While I sit on my couch for the rest of June, all of July, and most of August, I am constantly thinking what now? What do I do with all of this down time? Yes, I knew resting was my main job at that point, but boredom set in quick.
The worst part of it all was that it was Summertime, and while people were out enjoying themselves it felt like Summer was just passing me by. I was told to stay out of the sun and keep my incision clean and dry. Most summer activities are obviously enjoyed in the sun, which meant staying out of it limited the list of things I could do. I was beyond nervous to get an infection and my surgeon had warned me that if I were to get an infection, its hard to come back from that (eeeeekkk). Being outside in the summer, is often accompanied by sweat (not ideal for me) and I wasn't able to fully get my head wet to clean my incision if I started sweating anyways. So to sum up my summer, I stayed inside and didn't do much. I attended a bridal shower and a bachelorette for a friend whose wedding I was standing in at the end of the summer. I went out for the odd walk with Wren and back to her playground in our backyard but that was pretty much it. Thankfully, we still had a ton of help so Wren didn't really miss a beat.
This timeframe came with a lot of good days but a fair share of bad ones too. I almost always had concerns that something would go wrong before that 3 month mark. We made a trip to London about every two weeks for various appointments. There were a lot of little bumps in the road such as finding a "fluid collection" where the tumour used to be. We were watching it very closely and continue to, but we were reassured that at this point it is not concerning. I did however have to make multiple ER visits for symptoms that had arisen suddenly and ones that I was told to be watching for (ex, migraines, tingling, vomiting, vision changes, etc.).
Then it came to the radiation appointment, which was one of the scariest and more overwhelming appointments I've been to until this point. We were sent to see a radiologist to get their opinion on next steps and treatment if we decided to go ahead with it. We knew this would always be a step if there was a part of the tumour they were unable to get, but even though our surgeon felt it was a successful, full resection, he still wanted someone who specialized in this part of the recovery to meet with us. That way, we would have all of the information needed so we could make a solid decision about the path moving forward. When we arrived we were given a ton of information. Some key points were that the tumour was grade 2, meaning it wasn't benign but it wasn't malignant. It's confusing but basically it had potential to become cancerous even though at this point it was not. It was classified as atypical because of my age, and grade 2 is kind of a catch-all area when it is an atypical case. We were told that if it was cancerous, our conversation that day would be extremely different.
After our radiology appointment we came out with quite a decision to make. In the radiation world, you only have one shot at doing it, before it becomes more risky. A few important factors we had to consider were:
If I decided to go through with radiation it brought the chance of the tumour reoccurring down to 1-2% (vs. around 20% reoccurrence rate without radiation).
There were a lot of long term side effects that I could have to live with. Due to where the tumour was, the radiation could leave me with vision loss in my left eye, and a loss of hearing in my left ear, along with many more side effects that would effect day to day life.
If I chose to go ahead with it, I would get 4-5 treatments a week for 6 weeks.
If I went through radiation but the tumour started to grow again in the future, a second round of radiation would become a lot more risky, and ultimately wouldn't be a good choice. This is where the "you only have one shot" statement comes from.
We left the office feeling very confused. Our guts were saying that if we were told the tumour was all taken out, we would wait and see what the coming years bring. But that day we decided we needed to talk to my surgeon and get his opinion on our next move.
A couple weeks later we met with him and he said if it was him, he would just monitor it. In his opinion it was a complete resection of the tumour with good margins and there is an 80% chance it won't ever come back. This was a relief. I didn't want to put my body through anything else and I just wanted to move on with my life. That solidified by decision not to move ahead with radiation, so now all I needed to focus on was recovering, which included just doing a lot of nothing.
Sept 28th I got a call that my 3 month follow up MRI was good and he was extremely happy with everything! So back to 'normal life' I go...
Quick current updates: I will be posting on here a little less throughout the holidays as I am wanting to be completely present. We are battling colds and flus in our family on top of potty training. We seem to be back into the full swing of things and finding time to write more blog posts seems to get pushed to the bottom of the list. I thank you for following along and will continue in January. I am wishing everyone a safe, happy, and healthy holiday season!
LIFE LESSONS:
Staying positive is crucial. Even though when most people embark on a tough medical journey, it is easy to become negative. Stay as positive as you can, surround yourself with others that are positive and that will be your saving grace!
MEDICAL SUGGESTIONS:
We were told for so long exactly what we needed to do, and we did just that. When it came to the radiation appointment, they weren't telling us what we had to do, we had a choice and that was scary! If you have a big choice to make, you simply have to weigh the pros and cons and figure out what is best for you and your family and that's it. You can consider other people's opinions, but at the end of the day those that are directly affected are the only ones you need to listen to and consider. If one day I do need radiation, I at least know that we have the option.
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