Time is sure flying by! Can't believe that Fall is here! This is my favorite season since I love being outside with the changing leaves. The boys are all back to school and getting settled into to their activities. Thanksgiving weekend is a great time to sit back and really count our blessings. I'm really looking forward to spending time with the family this weekend.
We did have a really good summer I although did have to jump a few hurdles over the past couple of months. I have been recovering well from the radiation and my hair is even growing back a bit. We have had a few scary days where I was experiencing some symptoms. I woke up one morning and knew that something was going on. I was having a lot of pressure and pulsating happening in my head and was feeling very unwell. I called Jeff and was having trouble getting my words out to him. So frustrating when you can't communicate properly. We decided it was time for a trip to the ER to find out what was going on. By the time we got there I was able to find my words and the pressure and pulsating had started getting better. I was seen pretty quickly after passing the stroke protocol tests, thank goodness. A CT scan showed that there appeared to be a blood clot in my brain. They weren't entirely sure if this was what was causing my symptoms or if this was an incidental finding but they were quite concerned. After finding out from the ER doc this new diagnosis the neurologist and his team came in to explain things. Normally, this would be treated with blood thinners but since I already have some tumours in the brain which are bleeding, they didn't want to do this in fear of causing more bleeding. We have been told so many times that we are stuck between a rock and a hard place that my friend was joking about getting t-shirts made.... We know.... we're stuck between a rock and a hard place!!! So basically there was nothing they could do and I went home to monitor my symptoms being told to come back if my symptoms worsened. Pretty scary stuff!
I was offered the option to go on low dose Heparin injections to hopefully lessen the chances of the clot getting bigger and causing problems but in the end after much discussion decided to wait until my upcoming MRI and see how things were looking. The MRI actually caused more confusion since it's not easy to compare a CT with an MRI. So it was thought that maybe the clot looked less prominent but after my neurosurgeon took a close look it seems I would need another CT to accurately compare. Well, since it's essentially untreatable anyway, there doesn't seem to be much reason to do that. I have another MRI coming up in November so we'll see. My scan results never seem to be straight forward sometimes causing more confusion than giving any answers. Some good news was that when I asked what was happening with the leptomeningeal metastases, it seems that it's now pretty much undetectable on the scan. If there is any left it is very faint. So thrilled! The radiation may have really helped with this. So all in all the MRI results were positive. I had about a 30% response from the radiation with some tumours shrinking and others disappearing, some stayed the same, no new ones and so a pretty stable scan. The burden of disease has lessened so we're happy with that!
We are now adjusting to this new normal that has become our life. So having exhausted all of my treatment options, (we had decided not to push further for the Ipilibumab) I was referred to the Palliative Care Program and have been in connection with these wonderful nurses over the last few months. I want people to know that being in palliative care does not mean that I am dying or that I have given up. The whole idea of palliative care has really changed over the years. It's about living as well as I can and having the support and services to live well and to live at home as long as I can. Also, helping me make decisions that are best for both myself and my family. My GP has made this phase of my illness so much easier as he's so good at having these tough discussions with us and guiding us along the way. I know I often talk about how great my health care team is but especially over the last several months I have felt so supported and really taken care of. My oncologist is heading to a conference shortly and will bring back any new information or treatments in the works in other countries. Feels good that I'm not being written off or ignored. My nurse is so incredibly compassionate and understanding and so good at her job that I know when new symptoms pop up (and there have been lots of them) she is just a phone call away. They have all been so caring and willing to do anything needed to make things easier. I am very thankful for all of them!
If you've ever had to go to the ER, which most of us have at some point, it can be quite a hectic experience. This last time was no different for me. Spending hours lying in a bed, being poked and prodded, scanned and examined repeatedly is not fun. The one upside - Jeff & I were being entertained by the ladies on either side of me. We had the lady on the left yelling constantly and saying that she was dying and the lady to the right of us yelling at her to shut up. This went on for quite a while until the lady to the right apparently had enough and yelled "You WILL be dead in a minute if you don't shut up". And that was the end of that. We didn't hear another peep. We were trying not to laugh too loud! The ER is definitely not a very healing place to be. I realize that I got a diagnoses but because they couldn't treat the clot I really spent the day there for no reason. I will definitely be trying avoid the ER and relying on my GP and the palliative nurses as things come up. Not to mention the "healing" food that they give you to nourish your body... a pork sandwich and a pudding. I guess it's better than nothing but I really think we need to work on what we feed our patients, people who need real food to help in healing.
This weekend especially I will be focused on what we have to be thankful for. There is so much good in the world even in the midst of not only our own struggles but all of the craziness happening around the world right now. So much pain and heartache, it's hard to wrap your mind around it all. Yet the love and support that people have shown to each other is a beautiful thing. I am so thankful for
all of the good in my life, mostly my awesome family and friends.
Enjoy your weekend and Happy Thanksgiving everyone!!
xoxo Natalie
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Hey, Natalie! Don't be scared. On the bright side, the CT scan had revealed something that could otherwise turn into a far worse condition. Now you can have it treated along with the tumor you said you previously had. Just trust your doctor when he tells you to get a CT or MRI scan, because that's for your own good.
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