Hello friends and family! 

Unfortunately this update is not filled with (all) great news. This past week was a challenging week for me mentally, physically and emotionally. I’m tired. 

 

Remember back in June when we went on our cruise? Most agreed it was a seizure but some still felt it was simply a vasovagal response. I had a brain MRI and a short (30 min) EEG which were fine. I then had a longer EEG (48 hours) to monitor sleep/awake/drowsy states. This confirmed epilepsy. Sigh. My follow up appt in neuro isn’t until the end of the month so now I’m waiting to hear back to see what the plan is. The original neurologist responded to the nurse that I need to be on medication right away but they haven’t called me to officially do that yet. Hopefully early this week that will happen. 

I had my follow up PET scan. There is still a small spot that is lighting up in my colon. No major changes, which is a good thing. But we don’t know what it is. Colonoscopy was clear (except for more diverticulosis). My oncologist will be presenting my case at the colorectal tumor board on Friday. This way she can get input/ideas/thoughts/recommendations from a panel of colorectal cancer surgeons. 

 

I also had my 2 year dexa scan. Unfortunately there have been significant declines in my values and I now have osteopenia. Because of how much I lost (12% in back, 10% in left hip and 9% of total bone density in right hip in 2 years), she is starting me on infusions of Zometa every 6 months for 3 years.  Apparently the first time you get an infusion, you can have a serious flu-like response. My oncologist told me she has had patients present to the ED after because of how severe the symptoms are. Peds apparently keeps the kiddo for 24 hours because of the symptoms. So, I have that to look forward to. 

 

I also had my follow up appt in Rheumatology.  She did routine X-rays on my ankles and knees to monitor changes and noted an “old ununited distal fibular tip avulsion fracture.” No clue what that means but I guess with my bone density maybe it just happened 🤷🏻‍♀️.  I have been referred to ortho to determine if there is anything that needs to be done. 

 

They also did labs. Mostly everything is good. My scleroderma antibody is a little higher so, despite not having classic symptoms of it, it appears I do have it. Because of that, I will have to do a pulmonary function test to make sure my lungs are okay and will need to have another echo to check my heart as that disease attacks these vessels. PFT is next Wednesday. Still waiting to hear about the echo. 

 

Phew. Are you exhausted? Because I sure as hell am. 😔😭 

 

But, it’s not all down and depressing. Here’s some highlights. 

Last night was Penn State Women’s bball Pink Zone basketball game. The girls got their faces painted, had balloon animals made for them and walked with me down the “pink carpet.” :) I love associating any positive experiences I can to my cancer diagnosis for the girls. This is definitely one way to do that!

 

Finally, and probably the biggest update! For those who do not know, we are moving back to the Midwest! This decision did not come lightly. But, it is definitely the right decision. I am excited for the new opportunities and to be so much closer to our friends and family. Being able to go home for the holidays or just for a quick weekend getaway will be priceless. We will be moving near Quincy. I have accepted a position with Blessing Hospital and am SO excited!! I’ll even be able to work with one of my best friends from nursing school! 

Please continue to keep us in your thoughts over the next few weeks, and months, as we navigate these new medical issues as well as prepare to sell our house, find a new one and move (back) across the country. 

Much love,

~Linds