Archives: Melanoma

Cub Scout Pack 219 Sun Safety Talk

Tonight I had the honor of being a guest speaker at the local Cub Scout Pack Meeting speaking about sun safety! We started out by talking about skin being the largest organ on our body and that it needs protection, especially from our desert sun! I grew up in the desert and wore sunscreen to protect my skin in the summertime when I would swim, but I didn’t protect my skin in the winter. What happens if we don’t protect our skin? We can get a sunburn, ouch! But even worse, our skin never forgets the damage the sun does to it. Our skin isn’t very good at healing from sun damage. It remembers being hurt. A few years ago, a spot on my skin changed.  I found out I have a nasty kind of skin cancer called “melanoma.” Lots of grownups get tricked and think skin cancer can just be cut off. Sadly it can’t. The bad skin cells grew down into my body and try to take over my insides like weeds! I have to take lots and lots of medicine to try to stop the weeds. It’s not very fun. They make me tired and grumpy sometimes.  I hope that all of the cub scouts will take really good care of their skin so they don’t get melanoma! I have three ideas to help protect your skin!

SLIP on a shirt. When you are swimming or outside, make sure you wear a shirt with sun protection in it. A plain while tee is the equivalent of SPF 7 and does not offer enough coverage alone. A wet white tee is only SPF 3! So, check the labels of swim shirts to make sure they have sun protection built in. These are widely available during swim season at most retailers. They also don’t wear off in the water or with time and you don’t have to worry about missing spots while putting on sunscreen! My kids LOVE that I don’t have to rub cold sunscreen on their tummies and backs!

SLOP on sunscreen. Use a lot, don’t miss a spot! Make sure it is at least SPF 30 or above. Read the directions and make sure Mom and Dad read the directions, it needs time to start working before you go outside! Sunscreen is only water resistant for 80 or 40 minutes at a time, so check the label. It needs to be reapplied often! And be careful to get the tricky spots like the back of your neck and tops of your ears!

SLAP on a hat and sunglasses. This gives extra protection for the tricky spots that are easy to miss with sunscreen. The boy scout hats are a good start, but if you are hiking, try a wide brim hat to protect your ears and neck even better! Melanoma can grow in your eyes, so sunglasses are important to protect your eyes too!

You are invited to walk with Team Mela-no-mas in the Tucson 2013 Melanoma Walk! No mas means no more in Spanish, so our team name means no more melanoma! It is a family and dog friendly mile and a half walk. You can register to join us at Fight Melanoma Today. If you join our team, please email me and let me know what size t-shirt(s) you would like!

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.

Sept 19-CT scan results

It is with a joyful heart and thanks to God I share that my scan results were wonderful! Three of my tumors are stable in size and four are SHRINKING! The one remaining shrunk in length, but grew a small amount in width. Nothing indicates it won’t be shrinking all around by my next scans. Also, a blood marker which indicates tumor activity continues to drop and is now in the normal range.
My brain symptoms continue to improve and we have a lot of peace that they will resolve without giving me more trouble. I also followed up with my surgeon today because my wound on my back from surgery 6 weeks ago has sprung a leak! He is not concerned and though it may take longer than normal for the spot to heal because the area was irradiated in 2011, it is healing well and having the fluid buildup behind the wound removed will encourage healing.
We are so excited and encouraged. It has been quite the journey over the past 4 years! Thank you SO much for in prayers and support we will never be able to begin to repay. We would still love for you to join us for the Melanoma Walk on November 2! You can sign up to join Team Melanomas by clicking the link below.
Praise God for hope, prayer and anti-pd1!

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!