Brain pain, seizure, and steroids! Oh My!

The 411 from the past two weeks. Tuesday two weeks ago, I was shopping and began seeing “mirages” very similar to what I saw before my brain tumors were diagnosed in January. These lasted a long time and I ended up ditching my cart and having Danny come rescue me and we headed to the ER.

After a long wait and MRI, the MRI didn’t show any new tumors, but some swelling of the sites I had treated in January. This apparently is common with dying brain tumors, the brain isn’t very good at dealing with necrotic tissue.

I didn’t have any symptoms for the next 13 days until we were at Costco with the family on Sunday evening and the vision changes came back. It ended up getting worse and I had some difficulty communicating.

Got through the night (after a period of lucidity and convincing Danny I was ok for the night.) Woke up with the same symptoms plus a horrible headache and we decided it was time to call the doctor. They sent us to the ER with a promise that my doctor would meet us there. Sadly over the course of 6 hours in the ER waiting room, we moved from priority 3 to priority 8! (Still in the waiting room and the exam rooms were all full. We would have had to wait for 8 people to be discharged!)

We called the doctor who had planned to meet us begging for mercy and he agreed to send us home and call in a prescription for a steroid to reduce the swelling. I’m still not sure exactly why he sent me to the ER. I know it was my best chance to get an MRI, but he was confident as to what was going on based on the previous MRI. Originally, we thought I was having ocular migraines, but my radiation oncologist (the top guy in Tucson) told us this is NOT the issue, it is the necrotic tissue causing irritation and swelling in my brain. Oh the fun!

Tomorrow I see the radiation oncologist for a follow up. Thursday I am scheduled to have dose 9 of anti-pd1. I had a CT scan of my body today and we are praying and hoping for positive results showing less disease in my body so I can continue confidently on the trial. We are also praying the steroid does the trick and I will not need it long term.

Often drug trials don’t want patients on steroids, we are hopeful this won’t get me kicked out of my current trial. Steroids also suppress the immune system, and we want the opposite so my body can fight any cancer, so please pray that they work well and thoroughly and I can get off them quickly!

Hopefully this makes sense. We have a LOT going on and appreciate prayers. In praises, Danny has been incredible and his boss and company have given us 100% support giving Danny the week off to focus on taking care of me. We are so thankful. The kids have been a little worried but seem to be doing ok and are excited for special events at school this week. We will try to update on Thursday when we know what is going on.

Sept 16-More Brain Stuff

I was up all night with an ocular migraine (we hope.) My brain doctor is going to meet us in the ER at UMC. Please pray it’s nothing and I can get fast relief. This is a pain like no other.Thankfully I see the head of the dept. Pray for Danny too as I am mostly out of commission communication wise. Last night there was a point I couldn’t respond to him orally. A migraine is much preferable to a brain tumor and I seem to have ALL the symptoms for a bad ocular migraine. Brain tumors don’t hurt, though. Oww!

Sept 10- Life is good!

Bragging… life is SO much easier and pleasant when you aren’t in constant pain! Today I got 3 loads of laundry folded, actively did homework with the kids, took an awesome nap, held a “service” and buried a pet fish with a child, brought in the trash can, took trash out and am making dinner for the 3rd night in a row!!! I know it doesn’t sound like a lot, but it is huge for me. Praise God for this new quality of life!!! Scans next week and praying I can continue on Anti-pd1 and keep enjoying life for awhile.

Sept 3 and 5 Diary of a brain issue…

From emails to our prayer group.

This was the beginning of an auto-immune reaction which my oncologist believes Yervoy, a treatment I finished mid 2012 triggered in my stable brain tumor. It caused swelling around a dead tumor in my brain.

Sept 3- Hey all. I am at sprouts. Danny is on his way to get me. I am having flashing lights in my vision terribly. This is the same symptom I had with the brain tumors before. This time it’s much worse. Waiting on a call to see if I need to go to the er. Please pray it’s simple inflammation and not new tumors and that it will go away! We are abandoning a car at sprouts. Danny might need help getting it later. Thanks all. I feel fine, my vision is just incredibly impaired and I’m scared about what this might mean.

We are picking up the kids right now and taking them to Grammie’s school. Then heading to UMC’s ER for an MRI to see what is going on.

UPDATE: MRI results just in. No new lesions in her brain!!!
SO RELIEVED!
I think we’ll be out of here shortly and will pick up the kids from Martha’s parents on the way home. Thank you for lifting us up today. Please continue to pray for our Martha.

Sept 5- Another reason for celebration tonight. I saw an ophthalmologist today and my eyes are fine. There was some suspicion that my symptoms were caused by uvitius, a side effect of immune disorders (which my past and present treatments can emulate.) Thankfully my diagnosis was ocular migraine without pain and there is no reason to follow up at this point. It was quite a scary experience because it was so similar to my brain tumor symptoms, but we are thankful for a clear MRI and eye exam! Oh, and a clear skin check from my favorite TWO dermatologists today!

If only this was really the end of that journey…

Aug 30- LDH levels going down!

Good news shared by Danny on FB tonight. LDH is a blood test that is pretty non-specific, but is used to monitor organ damage by my doctor. Mine has been crazy high before and has been steadily going down. Here is a link for more info if you are interested.

OH: “I’m almost normal, babe!”… makes you laugh, but then you realize your wife is talking about her LDH level from blood tests earlier this week.

Then you tear up
and pray heaps of prayers
of thanks.

Aug 27- Healing

Surgical drain out yesterday, I am a new woman! Blog post in the works, but the surgery has made a huge change in my pain levels and energy levels. HUGE! I have treatment #8 of Anti-Pd1 tomorrow. Yay! Still so excited to be on the trial. A couple prayer requests, I’ve had a sore throat for a couple days. Pretty minor, but I don’t want my immune system “distracted.” I also will be having scans prior to dose 9 to see if my disease is stable enough or hopefully shrinking so I can stay in the study! Please pray for lots and lots of shrinkage! We are hopeful that with my new reduced tumor burden (due to the surgery) my immune system will be able to use the anti-pd1 to even better advantage in fighting the disease left in my body.
Thanks again for the incredible support and prayers!

Aug 17- Pray for Amy

I have been doing great since my surgery, but I wanted to post a request for prayer for one of my melanoma friends, Amy. Amy named my tumor that I just had removed for me (it’s name was Beelzebub.) Amy has a scary tumor of her own named Roscoe. Roscoe is in Amy’s heart! Boo hiss! Amy is on the same anti-pd1 trial I am on, but is having her treatment paused because she is having major blood count issues and they are having trouble finding a reason. Would you be willing to pray for this sweet woman who checks on me even as she wages her own battle? Pray for wisdom for her doctors and that she can get back onto her treatment. Anti-pd1 was working to beat back Roscoe and I want her to get her next dose! You can read more about Amy’s journey on her blog.http://nashvegasmom.wordpress.com/

Aug 14- Getting out of the house post surgery

Forgive the cross posting, please! I attended Parent Information Night tonight. My kiddos have fabulous teachers this year! I am excited for the possibilities the new year brings! It was SO good to be out of the house for a bit.
I am feeling good. My pain level post surgery is much lower than my tumor pain was pre surgery. Hoping that without the tumors, my immune system will be able to focus on reducing some of the tumors in my lungs and my armpit!

Aug 9- Surgery update from Daniel on Facebook

Daniel Bishop: Thanks for all the prayers! This morning’s gone really smoothly. I’m surprisingly calm – can only be God’s peace. Mar’s been in a great mood and was making her surgeon laugh for a while before they took her into the OR.

It’s a good day. And she’s gonna finish it two tumors lighter! 

Much later update from Martha: I was really nervous about coping with surgery pain while I was already on a pain management plan with a palliative care doctor. I actually woke up from surgery OUT of pain for the first time in a LONG time. Recovery was easy! Getting those tumors out was amazing for my quality of life. Almost NO pain from the time of the surgery! Amazing amazing difference in my quality of life! Yay!