Daymares and Talking Gooder

Today was my six month follow up with the neurologist about my seizure meds. I had two things I wanted to discuss with her today. One is my daymares which are vivid and I often can’t wake from despite repeated false awakenings in my dreams. This may be caused by the Keppra I am on due to focal seizures. Although it would be unusual for it to cause new symptoms after a year. So, after some discussion about my variety of medications which may be the root of these symptoms, we came up with two plans.

Plan A is for me to reduce my Ambien dose to the new FDA recommendations for woman (5mg rather than my prescribed 10mg.) And go back on brand name Keppra just to be safe. Generic meds have the same primary ingredient as the name brand, but filler ingredients don’t have to be exactly the same. So with medications which affect brain chemistry, my neurologist is more comfortable sticking with brand name when insurance cooperates!
Plan B is to reduce my Keppra (seizure med) dose from 1000mg XR to 750mg XR daily if plan A doesn’t work.

My other question for her was about my frustrations with expressing myself. I tend to be a grammar stickler, but despite repeated rereadings, I am overlooking simple misspellings and misused words in my writing. It is embarrassing and frustrating! I have noticed that in the past year my verbal aphasia has improved significantly, so we are hopeful that my brain will continue rewiring around my necrotic (dead) tumor sites. Speech therapy could help or playing some of the brain games online. We do know that my seizures affected my communication and reading so it makes sense that these areas are the slowest to recover. In the meantime, I shall consider blogging therapy and continue begging forgiveness for my grammar mistakes. It’s all a part of the journey. Isn’t cancer grand?

Melanoma and Skin Cancer Awareness Month

Photo of Martha labeled with frame which says "I wear black for me. Melanoma Awareness."
I wear black for me!
Photo of Martha labeled with frame which says "I wear black for me. Melanoma Awareness."

I wear black for me!

May is melanoma and skin cancer awareness and prevention month. The melanoma community is working to do some wonderful things for education and awareness. Last year I was blessed to have many people honor me by wearing black on melanoma Monday and it felt so good. This November at the annual local melanoma walk I had a large team of family, friends and co-workers supporting Team Mela-NO-mas. I feel like after almost five years of this journey, people are understanding melanoma better. They know it’s not “just” skin cancer. It first invaded a mole, then my lymph nodes, then my lungs and even my brain.

At this point, I am healthier than I have been in years and have real hope that I have a long future dealing with melanoma in more of a chronic disease relationship than a fatal disease. BUT that does not mean that I haven’t narrowly avoided a death sentence and may very well end up fighting for my life again. This fight has changed me in ways I never thought it would. I’m not sure if I will ever be able to communicate them. Daniel and I joke that I am “past my expiration date.” And boy am I thankful for that!

But this journey has left me restless. I am still frustrated that people close to me don’t “get it.” I see friends who have walked this journey at my side not wear sunscreen or complain to me about tan lines. It’s pretty obvious when I go to the park with them and they put sunscreen on their kids (just because I’m there) none of them are in the habit of applying it daily. Celebrating tans or complaining about tan lines developed on vacation is like rubbing salt in my wounds. And while I try to find peace with their choice, to be honest, it feels belittling to my journey. There ARE things they can do to protect themselves and their children from this disease and when they don’t take those steps, it’s tough not to take it personally.

For all my frustrations, there are people getting the message. I do have friends who diligently slather sunscreen on their kids and themselves daily. I have friends who have stopped tanning because of my story. I have friends who have had skin checks and avoided a late stage diagnosis like mine.

This month there are some wonderful campaigns going on. There are clever slogans and moving videos. I will be sharing many of those. Many of my fellow warriors are sharing their own stories. But this year, I’m not asking you to wear black for me. I’m asking you to learn from my journey to hell and back. Change your habits. Protect yourself from the sun. Check your skin. Check your kids. Make a derm appointment. Work to change your perception of a healthy glow to undamaged and protected skin. Try a new sunscreen to make it easier to wear. Do one thing for YOU and your family. I’ll wear black for me. If you wear black, do it for you, but don’t make that the only thing you do.

One year ago today

One year ago today, on January 23, 2013, Danny took me for an MRI which we thought was going to be a breeze. I needed it to qualify for a new clinical trial testing Merck’s Anti-pd1 drug which was showing VERY promising results. I was set to be the first patient at my cancer center on this trial. Emotionally, we were feeling very positive at the possibilities offered with this new trial although we were a bit nervous about ending up in the chemo arm of the trial. I felt good after the MRI, so my sweet husband took me to Jerry Bob’s for breakfast.

One year ago today, just as we were finishing eating, my cell phone rang and it was my trial nurse coordinator asking if we were free to come in to sign some paperwork she had just figured out we needed to fill out. (Liar, liar, pants on fire! We won’t fall for that trick again!)

One year ago today we were ushered into an education room where my nurse practioner (my oncologist was out of town this day), trial nurse and oncologist’s nurse sat us down to tell us the MRI had shown two tumors in my brain. I needed to treat these and would not be eligible to begin the trial.

One year ago today I had a meeting that afternoon with Dr. Stea, the head of radiation oncology at UAMC to plan the Steriotactic Radiosurgery I would have within the week which would use seemingly Star Trek lasers to kill my tumors from the inside out with just one treatment.  We also planned for me to also began two chemotherapies (oral Temedor and Avastin) the very next day.

One year ago plus a few days, I responded beautifully to the treatments and got into the trial I originally hoped for just a few months later than we planned. And although my immune system attacked the dead tissue in my brain this September and 2013 seemed to be the year of brain trouble, I have not had any new tumors, brain or body, since January 23, 2013! One Whole Year!  The anti-pd1 trial has stabalized and is shrinking my tumors. I have been on this treatment longer than any other I’ve attempted (excluding the year long interferon treatment I did when first diagnosed.) We have so much hope that this stability will continue.

One year ago today was probably the scariest day of my melanoma journey so far. And although the emotions of this journey continue to be a roller coaster, I am a walking miracle today with stable disease. God has been good to us. God would still be good if I had died 6 months  or even 3 years ago. He would still carry our family; but we are very thankful for our sweet family of four being able to hike this weekend and enjoy the beautiful 80 degree Tucson weather in January! Thank you for those who have stood with us in prayer and friendship.

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Everyone hates steroids

“Everyone hates steroids and you just have to tough them out.” seems to be the theme I hear from doctors and other patients these days. Perhaps I have been whining too much! Oops!

Today was my every 3 week appointment for my clinical trial. I started by being called back to have labs drawn within 2 minutes of checking in! This NEVER happens! I have a port-a-cath in my chest into which they put a needle to draw labs and give me IV treatments. The needle stays in for my appointment and I have it removed after I am finished with all my appointments and treatments for the day. It saves my arm veins from multiple sticks as well as prevents damage and pain to my veins with some of the tougher medications. So, I see a RN rather than a phlebotomist for labs which takes some time with steralization of the site, removing the numbing cream, figuring out which of the two ports is being accessed (my port is a dual lumen and both sections need to be regularly flushed.) And… I had a point to talking about my lab visit today, but I seriously can’t remember it now. See? Steroids suck. Oh well, here’s a photo of a port-a-cath to go along with my pointless rambling. 

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Next I was seen at the cancer center today by Lois, the wonder NP. I really like her. She is smart, kind, practical and didn’t palpatate my swollen belly out of mercy! I alternate seeing her and my oncologist. Lois watches me medically, but she also is a great help with helping me have the best quality of life possible. I have gained a significant amount of water weight (10lbs) in the past two weeks, plus an additional 15 lbs added from the two months I’ve had a ravenous appetite. Thanks for that, steroids! I think Lois knew palpitating my belly was a bad idea when she saw I had pulled out the ol’ pregnancy “rubber band the pants instead of buttoning them closed” trick for the day! Keeping it real here, folks!

The great news I got today from Lois is that over the next 10 days, I am changing to a lower dose steroid (I’ve been on Dexamethasone and am switching to Prednisone.) AND reducing my dosage until I am finished with steroids entirely!

I have not been allowed to take Anti-pd1 (the clinical trial drug that has been WORKING!) since the brain symptoms began in September and I have been on the steroid. The anti-pd1 revs up my immune system and the steroids work to calm it down, so they are counter-indicated. We WANT my immune system working on my tumors, just not going crazy on dead tissue in my brain. (insert joke about dead brain tissue and intellect here.) Assuming all goes well with weaning off the steroids, I should be able to have my 9th infusion of anti-pd1 on December 2nd! I am SO excited to get back on track with the trial and kicking melanoma’s ass! SO SO SO happy to have this plan in place and a light at the end of this brain mess tunnel!

Another example of my absent mindedness of late at the end of my appointment, it wasn’t until I got into the car and felt the port still accessed when I put on my seatbest that I realized I’d left the cancer center without returning to the lab to have the needle removed! Thankfully we hadn’t left the parking lot! Things like this have been happening a lot. I  had a friend remind me I’d left a Facebook conversation mid-chat a few days ago and completely forgotten about it among other silly mistakes due to not being able to think super clearly. I cried this morning because I couldn’t find a medication and my bra. I am tired of being absent minded! SO, if I have not responded to something I should have or forgotten to do something or forgotten your last name at the melanoma walk, PLEASE forgive me. It is not because I don’t care. My brain just seems to have fallen out. If you see it, send it home!

All in all it was a really good appointment and day. Steroids suck, but I can see a finish line!!!

A couple prayer requests if God leads you to pray for me.

First, that my brain and body will cooperate with the steroid wean. Steroids are tough on the body and I’ve been on a fairly high dose for a good amount of time. Of course, I am hoping to get off these darn things ASAP, so prayers for a smooth transition are SO appeciated.

Second, that the Anti PD1 will kick back in and continue to work to reduce my existing tumors and prevent any new ones! I have seen some signs as the steroid had been reduced that the Anti-pd1 may already be kicking back in which would be incredible and not unlikely based on how it seems to work in other patients. Yay for Anti-pd1!

Third, that this brain swelling stuff will NOT return! We need my immune system working hard from my neck down on tumors in my body, but my brain needs to stay calm, remaining tumor free is good, but attacking tumors that are already dead and attacking with a vengance is something we’d like to avoid!

Fourth, that God would provide an excellent melanoma specialist for my cancer center. My oncologist is overworked and needs help! I’ve heard rumors they may be hiring someone soon so please pray for the perfect person to treat the many Arizonans who face melanoma and are treated at AZCC.

Phenomonal Halloween

Thursday, October 31 was a wonderful, lengthy appointment with my oncologist. We discussed a LOT of things but what stuck out the most, and then my trial nurse repeated after he left was that I am currently  “phenomenal.” This is somewhat paraphrases, but essentially my oncologist told me, “Two years ago, things weren’t looking too good for you and the median life expectancy at that point is 7 months (thankfully he didn’t mention that then!) but today you are doing phenomenally and I expect you to be my patient for a long long time.”
The next focus and goal for my treatment is continuing to step down the steroids and get back to infusions of the trial drug toward the end of November. In the meantime, I skipped a second infusion #10 because the trial drug would ramp up my immune system and the purpose of the steroid treatment is to calm down my immune overreaction in my brain (see auto immune meningitis post.) We also discussed a variety of options I have if I cannot successfully get off the steroid and have to leave the trial, but for now things look really great that I will be off steroids and back on anti-pd1 at the end of November. Happy birthday to me! I am honestly SO excited to get back to it! I was the first appointment of the day and it felt great to walk out of that building with good news.
Danny and I then had a lunch date and went paint color choosing for the outside of the house. I think we’ve decided so now we just need to write the check. Ugh! Our little house is going to look so nice, though!
I am in a wonderful group on Facebook made up of moms from the kids’ school. There was discussion about when the annual costume parade would be so I asked if someone would be willing to cheer as my kids passed and snap some photos because I knew I’d be at this appointment and miss. The kids came home full of excitement and both mentioned that a couple of the moms took pictures of them. I think they felt like celebrities! So sweet and such a blessing for my heart to know my kids were loved on after both expressed disappointment that I couldn’t attend their class parties. It’s tough to ask things like this sometimes because I worry that I might come across a) as an attention whore who is bringing up the cancer thing AGAIN or b) the conversation killer who is bringing up cancer again ruins the conversation about the times of parties and parades. I don’t mean to do either and my hope is that my friends know me well enough to keep moving in conversation and planning (while also doing what bossy pants me requested, of course!)

Danny and the kids carved pumpkins that night and went trick or treating. I was pretty tired and ended up having a focal seizure. I wasn’t on a therapeutic dose of anti-seizure meds, so I knew this wa s a risk. I was reading and all of the sudden the words turned to greek letters. I had no idea what they said. I was aware enough to call Danny over and verbally describe to him what was happening. It was odd but intriguing. Put a bit of a damper on the Halloween celebrations, but I think I will just up my seizure meds to a therapeutic dose and be fine. Call in to my neurologist and waiting for a call back.

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!