October 10, 11 and 15th updates to FB

Update on Thursday and Friday’s appointments from last week. Great news. Along with an incredible sense of peace from God brought overnight on Wed- Thursday morning went very well. My spinal tap numbers are much better! White count norm is 0. It was 37 for first test and 11 on Monday (10 days apart)! I did not get my infusion because I am on the steroid, but I am still in the trial and have 12 weeks to get off the steroid. I should be able to get the next scheduled infusion on Halloween. I saw a neurologist Friday and will probably be on an anti-seizure med forever but because I was aware the entire episode, I can still drive! We are going to try some different anti-seizure meds to help me wake up a bit and avoid the depression. I also got orders for how to step down my steroid over the next month beginning on Saturday. For such a rough week of many unhappy appointments it was a remarkable one. Danny has been beyond incredible. Good news friends. Good news.  I have an MRI and followup with my radiation oncologist (brain guy) next week, and then maybe a break until Halloween! We can only hope!

And from my “normal page” Monday the 19th:
I worked harder than I have in ages today. Many loads of laundry dealt with, FOUR stores stopped at, including a less than $100 Costco trip, dinner prepped, active homework with the kiddos and played Outburst Jr with the family after dinner. I also have an appetite that I could unhinge my jaw and eat a chicken whole, but don’t think my caloric needs are quite that extensive yet. The steroids are talking! (Oddly enough, I am on day 3 of the lower steroid dose!) Must be the steroid in combination with actually sleeping last night. Here is to being able to stay still in the MRI tomorrow! Yikes!

October 6th Prayer Request

Couple prayer requests to throw out if anyone wants them. I am improving on the steroids. No more headaches or strobe lights in my right eye! Yay! The worst part now is dealing with side effects from meds. The seizure med makes me low and the steroid makes me high! So… I’m not sleeping much.  Tomorrow I am having a follow up lumbar puncture to make sure the meds are working, although based on side effects, it is fairly clear to me that they are clearing things up! Not very excited about the lumbar puncture, but it wasn’t awful last time. Praying it goes even better tomorrow. This isn’t my favorite season in life, but my kids are so sweet to me. No school to deal with this week and this inflammation is treatable, it’s not new disease! Counting my blessings!

Oct 2 and 3 Spinal Tap update

Well, I don’t rock hard enough to get to go on tour with the band… but the good news is that results from my spinal tap last Friday are in and show no sign of cancer cells in the spinal fluid nor infection. Thank God!

It did show inflammation my oncologists (yes I now have two oncologists holding conference calls about me. One the head of the department at UAMC- crazy) believe is caused by a treatment I did in the first half of 2012. It changes the immune system permanently and because the anti-pd1 is generating an immune response, my immune system decided to turn the dial up to 11, causing the brain side effects. So, now they need to tone down the immune response a bit while hopefully not completely stopping the good work against the tumors. I started a steroid today that I’ll take for 30 days then wean off. I continue on the anti seizure med, although my doctor cut my dose in half today because it has made me exhausted and I’ve been struggling emotionally (a normal and one of the more benign side effects, but one we hope improves!) I have an MRI and neurologist appointment to determine my driving and seizure med future as well as weekly oncologist appointments while I am on the steroid and that’s not all! Two infusions this month. Things are actually looking up. This brain stuff has been going on for a month, and next month brings a lot of appointments, but we are feeling there is finally a light at the end of the tunnel. Whew! You all might not have wanted all this info, but there you go!
Oct 3
Holy crap… other oncologist called. Official diagnosis is auto-immune meningitis (my immune system is causing brain swelling.) Doesn’t change anything, just a scary name (not the contagious nor infectious kind, just swelling.) Still need to tone down my immune system with steroids. Apparently the docs and nurses were really worried I had more brain mets, so this diagnosis is a relief. I do have a call back audition for spinal tap on Monday to make sure I am responding to steroids. I believe I am because today is the first time in weeks I am not treating a headache. Sounds like I won’t have anti-pd1 treatment while I am on steroids since that would counteract what we are trying to do. Status of study will be unknown for awhile. Gotta get my brain fixed first. A melanoma friend said hopefully my immune system is being as tough on my tumors as it is on my spinal fluid. Amen and amen. Please keep us in your prayers. Feeling better, but worn out from this journey!

Sept 28- Lumbar puncture #1

Seizures and braining swelling and lumbar punctures, oh my! The fun continues with my brain symptoms. I am taking a seizure medicine just in case and am waiting to be seen by a neurologist in October to determine my seizure and driving status. I haven’t had any communication issues like the original episode. Some aphasia once in awhile (not being able to identify a specific word) but that is an ongoing issue more related to stress and my own getting ahead of myself, I believe. I did suffer a few severe headaches this week and my right eye continues to bug me. I’ve decided the best description is that it feels as if someone is constantly waking their hand in front of my eye. I can see through it, but it is distracting and can feel “shadowy” at times (when I get tired,especially.) My vision was great today until about 8pm. Not too bad. I also have a little trouble identifying specific letters at the ends of words I’ve typed. THAT is strange! So forgive any typos, proofreading is tricky! I did call my Radiation Oncologist this week about the continuing symptoms. Originally he was going to put me right back on steroids, but we know my melanoma oncologist wouldn’t like that because steroids lower immune response and we’ve got a good one going at the moment. (Which may be why I am having all these brain issues.) So both oncologists put their heads together and ordered a lumbar puncture (aka spinal tap) for me because my MRI didn’t show enough swelling to indicate the severity of symptoms I am having (my best guess about this is that my MRI was on Sept 3 and isn’t up to date enough to show the current swelling, but getting an MRI is tough unless you go to the ER,) my oncologists thing I may be having long term side effects based on a drug I took in early 2012 called Yervoy. Yesterday I found out at 9:30 that I needed to be at UAMC for my lumbar puncture at 10:45 (Danny was at work and I can’t drive.) We made it, by the skin of our teeth, both a bit upset about the lack of notice- I called them! A good friend covered the kids and I was too mad about the communication lapse to get very nervous! The lumbar puncture wasn’t too awful. Very odd and not comfortable, but not painful. They took 10ML of fluid and sent us home. I was on bedrest for 24 hours to avoid a spinal headache and that brought is to today! Danny has been incredible, as usual. The kids were especially wonderful the day they came home to a Mom who shushed them incessantly because of her headache. It’s been a rough week, but we hope next week brings answers. Thank you for the continued prayers and support. There are lots of side effects right now, but Danny and I have a lot of peace that they are more of a pain in the rear to deal with than dangerous. My oncologists have given us the same impression. I have a few friends dealing with VERY similar circumstances and drugs right now so we take comfort in comparing notes and theorizing and I am SO thankful to live in the internet age.

Sept 26- More brain pain

Really rough day. I am doing better tonight and figured I’d better send an update while my head doesn’t hurt and vision is working. I finished up the steroids (I was on a 6 day reducing dose of prednisone) and my vision and headaches had greatly improved. But Tuesday night I became symptomatic again and had the worst headache of my life.This thing trumped any migraine I’ve ever struggled with. I got some sleep but the headache hung on until about 7pm on Wednesday. I did get my radiation oncologist called. He spoke with my melanoma oncologist and they both feel my symptoms are worse than the swelling on the MRI (On Sept 3) warranted. So, they want me to have a lumbar puncture (aka spinal tap) to check that it is not a long term side effect of Ipi, a treatment I took in the spring of 2012, but can have long term side effects. I am waiting on a call to schedule that. The headache returned with a vengance today. Along with crazy emotional side effects.

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.