Wednesday, January 17, 2018

Snowy Day Update

I am up early on what is a beautiful snowy morning with 2 hour school delays. Oh wait, now it’s a snow day here in Maryland! With coffee in hand and a quiet, dark morning I find this post matches the mood of the day. New snowfalls and new beginnings. I have just come from what seems like my millionth overnight stay at Hopkins. So far I have not gone a month in a very long time without something popping up that requires more serious medical attention. We are hopeful that February will be a quiet month in terms of medical issues that arise.

This latest stay was the result of more extreme headaches followed by nausea and vomiting. Similar to last time, but for a different reason this time around. The updated CT and MRI scans of the brain revealed what appeared to be a spinal fluid leak on the brain. It was treated with steroids, caffeine pills, and pain meds. They weighed the risk and benefits of doing a test that would confirm if there was leak and then would put in a blood patch to clot over the area. It was decided it was too much of a risk at this point to do the procedure, as it would introduce an additional spinal puncture, further risking additional leaks or complications. This latest stay was 5 days in the Weinberg Cancer Center at Johns Hopkins. It was not how we wanted to spend our long holiday weekend that's for sure. I was pretty disappointed in starting the steroid again. I had just weaned off of it at the end of December, which meant I could resume mistletoe injections and/or infusions. Because there are some complications to using these two meds together, mistletoe goes to the back burner once again.

In other news we are starting an additional chemo called Lynparza (olaparib), which is a pill form of chemo. We will do the Lynparza along with the IV Carboplatin. Because I am still having what appears to be continued progression, my doctor didn't want to keep this new drug on the back burner. We are throwing everything we can at it to get some stabilization of the disease.

I am so excited to be back home resting. Although with a snow day and having Charlotte home and cooped up it’s not going to be overly restful. But it's good to spend some time together since I had been away from her for so long. It seems that we are consistently being admitted to Hopkins for tests, treatments, and/or interventions.

Because the last few months have been so hard on us we are planning a well-deserved family vacation the beginning of February. Prayers this trip is as amazing as it sounds and that I will have the energy and stamina to keep up with everyone. Pray more importantly that I remain un-hospitalized leading up until the trip and for the duration. I am still having trouble with stairs from all the brain radiation. I am working on conquering them so that I can have the leg strength I need for our next adventure. We are all looking forward to a warm, relaxing, and enjoyable vacation to Hawaii. I for one am beyond excited to have something fun to look forward to and some much needed time with the family.

I have started more meditation and mindfulness work on myself. It’s been helpful to learn to slow the breath and get into a relaxing and meditative state. I came across a book called Being Well (Even When You Are Sick) that I really love. It was great for someone who is dealing with a life threatening diagnosis. It is simply written and easy to follow with great meditations you can download. I have read it twice over the last couple of months. The author, Elana Rosenbaum, also wrote a book called Here for Now: Living Well with Cancer Through Mindfulness. It was not as good as the first book, but another great resource for meditation. I highly recommend them if you are going through something like this and are looking to channel your mindfulness muscles. We all can use some help in getting our mind to quiet down and focus on the breath.

Happy snow day here in Maryland and I hope you are all safe and warm.
Love and Light - Erin    

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