Archives: October 2013

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!