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Saturday, April 20, 2019

Now what?


My sister was here to visit this week. Just because. She was here for 4 and half days and this is the only picture I took. My sister, on the other hand, was kind enough to take a few more I'm sure you'll appreciate. 
Playing cribbage Wed night. We took this to send to my dad❤

She was to leave late Thursday night so we'd planned to enjoy the forecasted warm weather that day and explore Jacksonville and Ashland. I went to bed Wednesday night feeling fine. I awoke at 6 am vomiting and in severe pain. Plans can change quickly.
I spent the next 8 hours forcefully retching or fitfully sleeping. My oncologist called around 8:30 with news for me (more on that later) and when I told her what was going on, she said she'd check back later. At 2 she told me to head to the ER to rule out the flu, etc. If those came back negative, she wanted a scan of my brain. "I don't want to alarm you but sometimes brain metastases can cause nausea and vomiting. Let's just be sure."
My sister got me ready to go to the hospital. 

My sister took me in. The triage nurse was concerned that my heart rate was so high. Not my norm. They got me in quickly as a result. IV for fluids, labs, and morphine.
I don't have the flu, though it could be another virus. Not likely food poisoning. 
Triage

The ER doctor ordered ct scans of my brain and abdomen. Both came back clear of any new or concerning changes. 
My entertainment team 😘

I was given the option to stay for observation or they'd release me to go home.  I opted to go home and rest. I was home by 7 and Charlie took my sister to the airport though she'd offered to stay.
By 8 I was running a high fever. My temp was between 101° and 103° for the next day and a half. My fever finally broke this morning, thank you Lord.
I've slept a lot the last few days. I've cancelled classes and sent out more refunds than I care to think about. I know it was necessary but that doesn't make it any easier. Now that I'm awake I'm processing it all, including the initial call from my oncologist. She was calling to let me know that the NCI (National Cancer Institute) had reviewed my files but they were not accepting my case. They feel the tumors in my liver are not in an ideal location for extraction for treatment. If anything changes in the next couple months they'll reconsider. In other words, if the tumors grow where they can access them, then they'll consider me.
I didn't realize how much hope I was placing in this option until I got the news it wasn't. Just knowing these tumors continue to grow inside my body is hard to swallow. I am scheduled for a liver biopsy Monday so I need to get well. I don't know if they'll do it if I'm still sick. We need the results of the biopsy to determine what next for treatment.
PRAYERS & PRAISES
Please join me in praising God for the time I got to spend with my sister this week. We did have a good visit and then she took such tender loving care of me. I'm so thankful for that.
Please pray for my family and close friends. It's so hard to see their helplessness and concern for me. I love them for it but I know they are hurting.
At least she got one good pic of us this week❤

Just a side note: For those of you following the drama in the news about nurses playing cards on their shifts, let me just say that I've been under the care of many nurses these last few years and I've never ever seen a lazy one nor one who doesn't put patient care first. Having several personal friends that are RNs, I have to say they are some of the hardest working people I know. So for all the times no one said thank you, and the times people yelled at you, peed on you, called you names, let me be the one to say THANK YOU. You ARE appreciated and VALUED.

Friday, April 12, 2019

First Line results


I had my petscan Wednesday. Yesterday, I went in for my monthly labs, recheck appt, and injection. They already had my results and I want to share the results of my first line of treatment:
The cancer in my bones shows growth and more metastases but it seems that the cells are less active. Unfortunately it has now spread to my liver and those cells don't seem to be responding to treatment. Both of these things explain my rising numbers. My onc suspects that the cancer in my liver may be a different mutation so she's sending me for a liver biopsy asap. There were some other concerning factors from my labwork so I'll have more tests done again tomorrow. My dr is opting to continue this first line of treatment until we have more info.
Please pray for:
HEALING
Less pain
Mental clarity
Wisdom
And my guys❤
As you can imagine, this new development is concerning and, if I'm totally honest, scary.
The good news is that my integrative oncologist applied on my behlf for a clinical trial through NCI and we got news this morning that that will consider my case.
Please pray for this too. I have to send them my petscan results and if I qualify, I'll be traveling to the Washington DC area for treatment. From what I'm told, this will be multiple trips of a few weeks at a time.